Publications

OIPO Disability Abstracts: Indigeneity and Postcolonialism

This literature review includes material from across several disciplines interrelated to indigeneity, postcolonialism, and disability. Included are books, articles, and other resources on topics such as:

  • Decolonization, imperialism and anti-imperialism, settler-colonialism, and the Global South
  • Inequities in health care and support services, including the COVID-19 pandemic and aging
  • Institutionalization and incarceration
  • Kinship and families
  • Indigenous arts, literature, and culture 
  • Activism and occupation
  • Ecology, climate change, and the environment
  • Intersectionality and disability justice

Content Warning: Some materials may concern controversial subject matters; therefore, discretion is advised.

Updated 1/20/2025

Abustan, P. (2022, Fall). Surviving and thriving: Queer Crip Pilipinx Kapwa dream worlds in Animal Crossing New Horizons. In A. Patsavas & T. Danylevich (Eds.), Crip Pandemic Life: A Tapestry [Special Issue]. Lateral, 11(2). 

As a queer, crip, genderfluid, and diasporic Pilipinx scholar-activist-educator, my ancestors, communities, and I live at the intersections of multiple sites of oppression and resistance. As someone who is sick, disabled, and neurodivergent, I experienced anxiety, depression, and chronic bodymind pain before the pandemic and even more during the pandemic. Nintendo Switch’s Animal Crossing New Horizons (ACNH) video game kept me afloat during uncertain times. ACNH opened up a whole new alternative universe for me to live in. I meditated more when escaping to my scenic and calming virtual island. I relaxed more when fishing, catching butterflies, and hearing the tranquil ocean waves crash within the game. Building my dream world within my ACNH virtual game contributed to me surviving and fostering deeper friendships with fellow sick, disabled, neurodivergent, queer, transgender, Black, Indigenous, and/or people of color (BIPOC) friends. ACNH became a safe way for us to socialize and it continues to be a source of joy for many of us. I highlight how my experiences with ACNH allowed me to cultivate queer, crip, and decolonial Pilipinx Kapwa dream worlds where all beings including people, animals, land, water, and air thrive together.

Abay, R. A., & Soldatić, K. (Eds). (2024) Intersectional colonialities: Embodied colonial violence and practices of resistance at the axis of disability, race, indigeneity, class, and gender. London: Routledge. DOI: https://doi.org/10.4324/9781003280422.

This book provides a rich synthesis of empirical research and theoretical engagements with questions of disability across different practices of colonialism as historically defined – post/de/anti/settler colonialism.

It synthesises, critiques, and expands the boundaries of existing disability research which has been undertaken within different colonial contexts through the rich examination of recent empirical work mapping across disability and its intersectional colonialities. Filling an existing gap within the international literature through embedding the importance of grounding these within scholarly debates of colonialism, it empirically demonstrates the significance of disability for the broader scholarly fields of postcolonial, decolonial, and intersectional theories.

It will be of interest to all scholars and students of disability studies, sociology, critical studies, sociology of race and ethic relations, intersectionality, postcolonial and decolonial studies, and human geography.

Allen, A., Penketh, C., & Wexler, A. (Eds.). (2022). Thematic Issue on Disability Justice: Decentering Colonial Knowledge, Centering Decolonial Epistemologies. Research in Arts and Education, 2022(3). 

This thematic issue of Research in Arts and Education derives from the presentations and keynote addresses of the 3rd International Disability Studies, Arts & Education Conference (DSAE). In light of the ongoing global pandemic, the conference was held online for the first time from October 7 to October 9, 2021. In preparation for the conference, we recognized how the pandemic had fore-fronted social justice in disability studies, art education, and society: the inequity of economic resources, the exploitation of the most vulnerable people, systemic racism, and the disproportionate effects of climate change on non-industrial countries. The intersection of racial, able-bodied, ethnic, sexual, cultural, gendered, environmental, and economic power disparities are interlocking oppressions that cannot be detached from colonial history. Decolonial work is foregrounded in the lived realities of marginalized people who diverge from neurotypical and dominant systems. Thus, these issues were threaded throughout the conference presentations.

The issue includes an editorial, a review of the book Eco-Soma, and the following contributions:</span

Elizabeth Armstrong, E., Colegate, K., Papertalk, L., Crowe, S., McAllister, M., Hersh, D., Ciccone, N., Godecke, E.,  Katzenellenbogen, J., & Coffin, J. (2023). Intersectionality and Its Relevance in the Context of Aboriginal People with Brain Injury in Australia. Seminars in Speech and Language eFirst. DOI: https://doi.org/10.1055/s-0043-1776755.

In this article, we explore the benefits of recognizing the impact of intersectionality on access to, and provision of, brain injury care in a First Nations context. While disadvantage and discrimination are often associated with the intersection of culture, gender, disability, and socioeconomic disadvantage, it is only when these factors are explored together that clinicians can really understand what people need to recover and thrive following acquired brain injury. In this article, we challenge speech-language pathologists to examine their own practices, to look beyond Western models of health and constraints of many current institutional models of care and ways of framing research, to acknowledge historical and ongoing colonizing influences, and to engage with community-led solutions. We provide a model of Aboriginal-led care, where intersection of discrimination and marginalization is minimized and the multiple components of the individual, carers/communication partners, and the environment become empowering factors instead.

Avery, S. (2022). Intersections in human rights and public policy for indigenous people with disability. In F. Felder, L. Davy, & R. Kayess (Eds.), Disability law and human rights [Palgrave Studies in Disability and International Development] (pp. 221–238). Palgrave Macmillan, Cham. DOI: https://doi.org/10.1007/978-3-030-86545-0_11. 

As a group intersecting two marginalized populations, Australia’s Indigenous people with disability experience greater social inequality compared to other groups in society, including Indigenous people without disability and people with disability who are not Indigenous. Human rights frameworks and social policy that are designed to address one aspect of their rights have proven inadequate in securing their composite rights as an Indigenous person and as a person with disability.

Barker, C. (2011). ‘Decrepit, deranged, deformed’: Indigeneity and cultural health in Potiki. In Postcolonial Fiction and Disability. London: Palgrave Macmillan. DOI: https://doi.org/10.1057/9780230360006_2. 

“In the prologue of Patricia Grace’s Potiki (1986), we are presented with the tale of a master carver whose life’s work is dedicated to the representation of his Mãori community’s ancestors in their whare whakairo (carved meeting house). In his carvings, he characterizes these ancestors in all their multiplicity as ‘eccentric or brave, dour, whimsical, crafty, beguiling, tormenting, tormented or loving figures’ (Grace, 1987, p. 7). He draws on their embodied differences to acknowledge and celebrate the richness of their diversity:

And these ancestors come to the people with large heads that may be round or square, pointed or egg-shaped. They have gaping mouths with protruding tongues; but sometimes the tongue is a hand or tail coming through from behind the head, or it is formed into a funnel or divided in two, the two parts pointing in different directions. There will be a reason for the type of head or tongue the figures have been given.”

Boda, P. A. (2022). Identity making as a colonization process, and the power of disability justice to cultivate intersectional disobedience. Education Sciences, 12(7), 462. DOI: https://doi.org/10.3390/educsci12070462. 

Intersectionality has been used to describe the products of difference but scholars who work intersectionally in the tradition of Disability Justice have argued that attention should focus on the process of identity making—those processes by which some Lives–Hopes–Dreams are positioned as more valuable and Whole because of our societies’ commitments to racial capitalist coloniality. This work uses intersectionality as critical social theory, combined with broader cultural analyses of colonization as a process that did not stop within the creation of the Modern Western world, to visibilize identities often explicitly erased: students labeled with disabilities. Through excavating group-made artifacts from a larger research study, I show how intersectionally-disobedient grammars can serve to illuminate complex identity making beyond juxtaposed colonialities of power, and, therein, I situate this bricolage approach as an embodiment toward Disability Justice.

Boda, P. A., Nusbaum, E. A., & Kulkarni, S. S. (2022). From ‘what is’ toward ‘what if’ through intersectionality: Problematizing ableist erasures and coloniality in racially just research. In S. Rizvi (Ed.), Racially-Just Epistemologies and Methodologies, Part 2 [Special Issue]. International Journal of Research & Method in Education, 45(4), 356-369. DOI: https://doi.org/10.1080/1743727X.2022.2054981.

Drawing from critical theory and intersectionality, we speak with and through racially just methodologies and epistemologies to problematize who is being centred, for what purpose, and encourage the visibilizing of identities not explicitly engaged within this work. We argue that for racially just research to challenge how whiteness and ableism are embodied by traditional research design approaches it needs to problematize the coloniality wedded in such commitments and bear witness to the importance that disability identities, culture, justice, and freedom have in this endeavour. We first unpack what racially just methodologies and epistemologies have enquired from the late 1990s-2020, as well as where disability and coloniality have been represented (erased) in this work. Then, we engage with Mignolo’s seminal theorization of epistemic disobedience and its importance in the generation of our thesis. Finally, we make visible the need to conceptualize the margins within racially just enquiries that seek to disrupt whiteness in educational research by problematizing the ontological erasure of disability among these justice-oriented projects. We end by shifting from ‘what is’ toward ‘what if’ to envision radical possibilities for the future that disrupt mono-categorical enquiries seeking to challenge racism but invariably leave Othered identity nexuses undertheorized by design.

Bruno, G., Chan, T. A., Zwaigenbaum, L., Nicholas, D., & Coombs, E. (2023, March 21). Indigenous autism in Canada: A scoping review [Preprint Version 1]. Research Square. DOI: https://doi.org/10.21203/rs.3.rs-2661859/v1.

Purpose: Currently there is a severe lack of research on autism and Indigenous people in Canada. This scoping review explores explore this literature gap and assesses the same literature from an Indigenous perspective.

Methods: Scoping reviews are an effective means to explore the literature in a specific area, in this case, autism and Indigenous people in Canada. We explored existing literature as it pertains to Indigenous populations and autism in Canada. To support this review, the Indigenous Quality Assessment Tool (QAT) was adapted to appraise the quality of literature.

Results: In total, there were a total of 212 articles identified of which 24 met the inclusion criteria: (1) some focus on autism, (2) a component specific to Indigenous people, and (3) specific to Canada. Of the 24 articles and reports, 15 were peer-reviewed and the rest considered grey literature. Most articles focused on program delivery with some literature using primary data (quantitative and/or qualitative). Overall, the quality of the research was appraised as poor, as determined by the QAT.

Conclusion: Findings reaffirm the critical need for research that addresses autism in Indigenous communities within Canada and show the importance of having research done in full partnership with, or led by, Indigenous people.

Burch, S. (2014, Fall). “Dislocated histories”: The Canton Asylum for Insane Indians. In L. Ben-Moshe & S. Magaña (Eds.), Race, Gender, and Disability: Intersectionality, Disability Studies, and Families of Color [Special Issue]. Women, Gender, and Families of Color, 2(2), 141-162. DOI: https://doi.org/10.5406/womgenfamcol.2.2.0141. 

This work examines removals, institutions, and community lives in U.S. history. It centers on “dislocated histories” from South Dakota’s Canton Asylum, the only federal psychiatric hospital for American Indians. Between its opening in 1902 and forced closure in 1934, the Asylum ultimately held four hundred men, women, and children from seventeen states and nearly fifty tribal nations. Individual histories of those confined at Canton and their families are inextricably tied to broader stories of forced removals; the rise of penal, medical, and disability institutions; eugenics; and contests over citizenship and American identity in U.S. history. This work explores some of the methodological issues around how to present Canton Asylum, Native American, split family, and dislocated community histories. Central to the process is relocating this history, placing Canton inmates at the center. Considering the dislocated history of Elizabeth Alexis Fairbault and her family draws attention to the highly relational dimensions of these factors; this approach intentionally challenges racist, sexist, and ableist systems of power that shaped the options and experiences of people incarcerated at Canton. It complicates the dominant, institutional interpretation and–to a limited degree–restores those removed from their communities to our historical frameworks.

Burch, S. (2021). Committed: Remembering native kinship in and beyond institutions [Critical Indigeneities]. Chapel Hill: The University of North Carolina Press. 

Between 1902 and 1934, the United States confined hundreds of adults and children from dozens of Native nations at the Canton Asylum for Insane Indians, a federal psychiatric hospital in South Dakota. But detention at the Indian Asylum, as families experienced it, was not the beginning or end of the story. For them, Canton Asylum was one of many places of imposed removal and confinement, including reservations, boarding schools, orphanages, and prison-hospitals. Despite the long reach of institutionalization for those forcibly held at the Asylum, the tenacity of relationships extended within and beyond institutional walls.

In this accessible and innovative work, Susan Burch tells the story of the Indigenous people—families, communities, and nations, across generations to the present day—who have experienced the impact of this history. Drawing on oral history interviews, correspondence, material objects, and archival sources, Burch reframes the histories of institutionalized people and the places that held them. Committed expands the boundaries of Native American history, disability studies, and U.S. social and cultural history generally.

Cachia, A. (2022). Art history’s co-inhabitants: Disabled artistic approaches to indigeneity. In K. Watson & T. W. Hiles (Eds.), The Routledge Companion to Art and Disability. New York: Routledge. DOI: https://doi.org/10.4324/9781003009986-10.

What are some disabled artistic approaches to indigeneity? This chapter examines the contemporary art practices of Oceanic artist Pelenakeke Brown, who resides in Aotearoa New Zealand, and Lenape and Potawatomi neuro-diverse artist Vanessa Dion Fletcher, who resides in Canada. Both artists have appropriated long held and respected practices tied to their Indigenous heritage through tatau and quillwork respectively in an attempt to establish a sense of place, a sense of cultural affinity, and a sense of who they are. Both artists have also used their unique disabled embodied knowledge to activate production of Indigenous traditions, customs and rituals, inspired initially through their mothers, and feminist guidance. They create their artwork through individual physical, cognitive and neuro-diverse capacities, be it through cerebral palsy or short-term memory loss, through choreography, space, time, and language. Their approaches posit disability as a methodology that frames the production of the work. In other words, disability perspective is an integral funnel or channel in the path to executing a final product or object. Their intersectional identities as disabled, Indigenous women are inextricably woven together. Brown and Dion Fletcher draw on their personal ties to these histories through multidisciplinary art forms.

Canagarajah, S. (2023, February). A decolonial crip linguistics. Applied Linguistics, 44(1), 1–21. DOI: https://doi.org/10.1093/applin/amac042. 

This article opens a conversation between disability studies and linguistics from the author’s positionality from the Global South. It argues that capacity building for both the abled and disabled in the North is implicated in the disablement of people in the Global South. A decolonial orientation to disability studies values vulnerability, relationality, and ethics which are less privileged in the academy. The article demonstrates how such a crip linguistics might facilitate a different understanding of language competence and analysis. Bringing out the ableism in dominant models of language competence, the article illustrates how linguistics might conceive communication as anomalous embodiment. Such an orientation will move from grammatical norms to nonnormativity, and diversity to multiplicity, as speakers engage with social networks and material ecologies for generating meanings in distributed practice motivated by relational ethics.

Collings, S., Dew, A., Gordon, T., Spencer, M., & Dowse, L. (2018). Intersectional disadvantage: Exploring differences between Aboriginal and non-Aboriginal parents with intellectual disability in the New South Wales child protection system. Journal of Public Child Welfare, 12(2), 170-189. DOI: https://doi.org/10.1080/15548732.2017.1379456. 

Background: Parents with intellectual disability and Aboriginal and Torres Strait Islander parents are overrepresented in child removal but research has not explored the intersection of Aboriginality and intellectual disability in child protection.

Methods: A case file review of 45 parents with intellectual disability (n = 14 Aboriginal and n = 31 non-Aboriginal) engaged in care proceedings in New South Wales was undertaken. Parent and child demographics and investigation triggers and outcomes were compared.

Results: Aboriginal parents were significantly younger than non-Aboriginal parents at initiation of an investigation, twice as likely to be investigated due to concerns about parenting capacity, and more likely to have children removed than non-Aboriginal parents.

Conclusion: The intersection of Aboriginality and intellectual disability appears to increase the risk of negative encounters with child protection systems. Targeted support for young Aboriginal parents and greater disability awareness and cultural sensitivity by child welfare workers are needed.

Changfoot, N., Rice, C., Chivers, S., Williams, A. O., Connors, A., Barrett, A., Gordon, M., & Lalonde, G. (2022, December). In R. Jones, N. Changfoot, & A. King, (Eds.). Special Section: Revisioning ageing futures: Feminist, queer, crip and decolonial visions of a good old age. Journal of Aging Studies, 63, 100930. DOI: https://doi.org/10.1016/j.jaging.2021.100930. 

In this article, we re-vision Anishinaabe, crip and queer futures of aging against and beyond dominant successful aging narratives by drawing on our archive of digital/multimedia videos (short documentaries) produced in conjunction with older/e/Elder persons and the Re•Vision: Centre for Art and Social Justice. These documentaries are directed and come from the lives of those older and e/Elder persons whose aging embodiments intra-sect with their Indigenous, disabled and queer selves. Disrupting hegemonic successful aging narratives, and specifically heteronormative and ableist trajectories of aging, these alternative renderings of aging futures offer rich, affective relationalities and cyclical timescapes of older experience that draw on the past even as they reach into divergent futurities. Anishinaabe, crip and queer aging emerge. While we discern resonances in relationalities and temporalities among and between the Anishinaabe and non-Indigenous stories, we also identify significant differences across accounts, indicating that they cannot be collapsed together. Instead, we argue for holding different life-ways and futures alongside one another, following the 1613 Two Row Wampum Treaty between the Dutch and the Haudenosaunee, in which each party promised to respect the other’s ways, and committed to non-interference, as well as to the development and maintenance of relationship.

Cooms, S., Muurlink, O., & Leroy-Dyer, S. (2022). Intersectional theory and disadvantage: A tool for decolonisation. Disability & Society. DOI:   https://doi.org/10.1080/09687599.2022.2071678. 

It is widely recognised that First Nations peoples in Australia (also known as Aboriginal Australians) have some of the poorest health and social outcomes of any other group. This is evidenced in a number of areas including the disproportionately high rates of disability for First Nations peoples in Australia. This paper explores how the intersection of race and disability compounds disadvantage for First Nations peoples with disability in Australia. Additionally, it explores the conceptual diversity of disability and the role colonisation has played, and continues to play, in creating and maintaining high rates of disability for First Nations peoples in Australia. This paper argues for the decolonisation of the disability sector as a step towards improving outcomes for all. In particular, the use of intersectionality theory is examined as a potentially effective tool for mapping and enacting the decolonisation of the disability sector.

Coráñez Bolton, S. (2023). Crip colony: Mestizaje, US imperialism, and the queer politics of disability in the Philippines. New York: Duke University Press. DOI: https://doi.org/10.1515/9781478024187. 

Sony Coráñez Bolton examines the racial politics of disability, mestizaje, and sexuality in the Philippines, showing how heteronormative, able-bodied, and able-minded mixed-race Filipinos offered a model and path for assimilation into the US empire.

Cowing, J. L. (2020, Fall). Occupied land is an access issue: Interventions in feminist disability studies and narratives of indigenous activism. In J. Waggone & A. Mog (Eds.), Visionary Politics and Methods in Feminist Disability Studies [Special Issue]. Journal of Feminist Scholarship, 17, 9-25. DOI: https://doi.org/10.23860/jfs.2020.17.02.

“Native/Indigenous narratives of health and environmental activism often engage with feminist disability issues to center the connections between land, health, sovereignty, and historical legacies of settler militarized colonialism.” 

Dalvit, L. (2022). Differently Included: A decolonial perspective on disability and digital media in South Africa. In P. Tsatsou (Ed.), Vulnerable people and digital inclusion: Theoretical and applied perspectives. Palgrave Macmillan, Cham. DOI: https://doi.org/10.1007/978-3-030-94122-2_16.

South Africa is a diverse country with a legacy of inequalities which extend to the digital domain. Alongside race, gender, socio-economic status and others, (dis)ability is an important dimension of inclusion/exclusion. In this chapter, the digital inclusion of people with disabilities in South Africa is explored through a decolonial lens. In particular, the focus is on unmasking digital inclusion as constructive absence, in problematising it as a right and in exploring its liberatory (as opposed to emancipatory) potential. By analysing publicly available online texts, it is argued that digital inclusion should be regarded as a complex and nuanced phenomenon, with the potential to address as well as reproduce inequalities and the marginalisation of (some) people with disabilities.

DeMirjyn, M. (2020). Bridging mindbodyspirit in a borderlands reframing of disability. Gender and Women’s Studies, 3(1), Art. 3. DOI: https://doi.org/10.31532/GendWomensStud.3.1.003. 

“Th[is]… article engages with the written works by Gloria Anzaldúa as a disability theorist implementing a mindbodyspirit aesthetic. Additionally, Anzaldúa’s constructions of spiritual mestizaje and Nepantla are discussed as platforms for the integration of multiple subjectivities.”

Dew, A., Barton, R., Gilroy, J., Ryall, L., Lincoln, M., Jensen, H., Flood, V.,  Taylor, K., & McCrae, K. (2020, December). Importance of land, family and culture for a good life: Remote Aboriginal people with disability and carers. Australian Journal of Social Issues, 55(4), 418-438. DOI: https://doi.org/10.1002/ajs4.96. 

Worldwide health and social outcomes of Indigenous people are poorer than those of non-Indigenous. In Australia, the Indigenous population experience disability at more than twice the rate of the non-Indigenous population, and a quarter live in geographically remote areas. The challenges associated with accessing services and supports in remote communities can impact on a good life for Aboriginal people with disability. Interviews were conducted with Aboriginal people (Anangu) with disability and family carers from remote Central Australian communities and service workers. Thematic data analysis determined factors Anangu viewed as essential to living a good life: connection to their Lands, being with family and engaging in cultural activities. Workers’ support for a good life involves “Proper Way” help and an understanding of Anangu culture. Three culturally relevant strengths-based concepts are important in supporting Anangu with disability to live a good life: being connected to the Lands and family, sharing together and working together.

Dhand, R. (2023). Indigenous peoples with disabilities and Canadian mental capacity law. In C. Kong, J. Coggon, P. Cooper, M. Dunn, & A. R. Keene (Eds.), Capacity, Participation and Values in Comparative Legal Perspective. Bristol, UK: Bristol University Press. DOI: https://doi.org/10.51952/9781529224474.ch007.

Indigenous peoples with disabilities are extremely vulnerable when interacting with Canadian mental capacity law. They are disproportionately at risk of experiencing barriers to accessing justice, undermining their cultural values and Charter-protected rights of autonomy, medical self-determination and equality. There is a dearth of research addressing the values underlying supported decision-making and substitute decision-making for Indigenous communities in Canada. This chapter analyses the legal framing of mental capacity in Canada and the values and principles that are relevant for Indigenous peoples in Canada. I highlight the significant perspectives of Indigenous peoples in the framing of capacity and the types of intersectional barriers they experience accessing equitable decision-making processes in capacity law. The analysis reveals how Indigenous peoples with disabilities are isolated and denied autonomy. Their participation is curtailed as a result of lack of access to culturally appropriate treatment and systemic discrimination.

Duke Disability Alliance.  (2022). Jen Deerinwater: Accompliceship Now! Disability and Indigeneity on the Frontlines of Climate Crisis [YouTube Video]. Durham, NC: Duke University.

“How does climate crisis impact disabled and indigenous communities? What can we learn about resistance from crip wisdom and indigenous knowledges? Hear about the intersections of these topics from disabled Cherokee organizer and journalist, Jen Deerinwater.”

Dwornik, A. (2021). The interface of Mad Studies and Indigenous ways of knowing: Innovation, co-creation, and decolonization. Critical Social Work: An Interdisciplinary Journal Dedicated to Social Justice, 22(2). DOI: https://doi.org/10.22329/csw.v22i2.7097

This paper explores the interface between Mad Studies and Indigenous ways of knowing, and argues that the dialogical expanse that exists between these two fields could be a site for innovation, co-creation, and decolonization. Mad Studies is a radical approach to studying the ways we organize and respond to mental health experiences. The field questions and unsettles biomedical understandings of mental illness, and frames psychiatric experiences as diverse forms of human emotional or spiritual expression. Indigenous perspectives on disability describe mental health using a holistic, wellness-based lens, with many scholars highlighting the link to colonial violence and oppression. The interface of Mad Studies and Indigenous ways of knowing could provide a unique platform for gaining a broader understanding of Indigenous mental health while resisting Western, psy explanations of emotional distress. Different interpretations and understandings can be discussed and debated, and through ethical spaces (Ermine, 2007) new understandings or ideas may emerge. These, in turn, may help decolonize some of the dominant biomedical biases that underpin many contemporary psychiatric treatment approaches. Social workers have a particularly important role to play in these conversations. Our professional commitment to anti-oppression and social justice implores us to take an active role in these debates. Through our workplaces we can problematize dominant discourses from within dominant systems, and make our contribution to decolonization.

Friedman, C. (2023, May). Ableism, racism, and the quality of life of Black, Indigenous, people of colour with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 36(3), 604-614. DOI: https://doi.org/10.1111/jar.13084. 

Background: Research indicates Black, Indigenous, people of colour (BIPOC) with intellectual and developmental disabilities face disparities in quality of life outcomes. This study’s aim was to examine how ableism and racism impacted the quality of life of BIPOC with intellectual and developmental disabilities.

Methods: Using a multilevel linear regression, we analysed secondary quality of life outcome data from Personal Outcome Measures® interviews with 1393 BIPOC with intellectual and developmental disabilities and implicit ableism and racism data from the 128 regions of the United States in which they lived (discrimination data came from 7.4 million people).

Results: When BIPOC with intellectual and developmental disabilities lived in regions of the United States which were more ableist and racist, they had a lower quality of life, regardless of their demographics.

Conclusion: Ableism and racism are a direct threat to BIPOC with intellectual and developmental disabilities’ health, wellbeing, and overall quality of life.

Gerlach, A. J., Matthiesen, A., Moola, F. J., & Watts, J. (2022). Autism and autism services with Indigenous families and children in the settler-colonial context of Canada: A critical scoping review. Canadian Journal of Disability Studies, 11(2), 1-39. DOI: https://doi.org/10.15353/cjds.v11i2.886. 

In Canada, Indigenous families and children experience structurally-rooted marginalization due to longstanding and ongoing histories of colonization and discrimination. Indigenous children with autism spectrum disorder (ASD) are currently underrepresented in literature and databases on ASD in Canada, raising concerns about their equitable access to related services and optimal health outcomes. This critical scoping review maps out existing and emerging themes in literature pertaining to ASD and the provision of ASD services with Indigenous children and families in Canada. No previous reviews of literature have focused exclusively on ASD among Indigenous children in Canada. A literature search conducted across eight databases between 2011 and 2021 resulted in 362 potentially relevant publications, of which 19 met our inclusion criteria. Findings point to a clear lack of data on ASD and unmet health, social, and educational service needs among Indigenous children with ASD in Canada. ASD is also frequently discussed through a Western, deficit and medical discourse. The main contributors to the lack of data and unmet service needs relate to the historical positioning of colonial oppression, stigma, an overrepresentation of fetal alcohol spectrum disorder (FASD), lack of funding, and concerns about standardized diagnostic and assessment tools, and social determinants of health. Recommendations for policy, practice and research concerning Indigenous children with ASD are proposed.

Gilroy, J., Donelly, M., Colmar, S., & Parmenter, T. (2013). Conceptual framework for policy and research development with Indigenous people with disabilities. Australian Aboriginal Studies, 2, 42-58

No explicitly Indigenous conceptual framework to advance research and policy development to assist Indigenous people with disabilities exists. This paper proposes a conceptual framework that brings together the strengths of both the International Classification of Functioning, Disability and Health and Indigenous Standpoint Theory for research and policy development regarding Indigenous people with disabilities. This framework provides six criteria that bridge the cultural interface between Indigenous and non-Indigenous communities, while emancipating Indigenous people with disabilities in the research and policy development process in Australian disability and Indigenous affairs.

Grech, S., & Soldatic, K. (2015). Disability and Colonialism: (Dis)encounters and Anxious Intersectionalities [Special Issue]. Social Identities, 21(1). 

“This special issue sets out to position disability within the colonial (the real and imagined), as it explores a range of (often anxious) intersectionalities as disability is theorised, constructed, and lived as a post/neocolonial condition. The issue emerged from serious and pressing concerns from disability and other scholars engaged in a dialogical praxis that seeks to critically explore, interrogate and challenge a series of epistemic,ontological and practical negligences. Much of this work has occurred at the margins of various disciplines and projects, in particular the intersections of disability studies and postcolonial theory, intersections that continue to be marked by ambivalence. Disability Theorists who have traversed this path have mooted that, too often, disability is drawn upon as a metaphor by (post)colonial theorists, while for disability theorists, colonisation has become a key metaphor to describe experiences of oppression, marginalisation and exclusion to which disabled people are often subjected (Barker & Murray,2010; Sherry,2007). This process of conflation within either field has denied the necessary recognition of an uneven biopolitical incorporation’(McRuer,2010, p. 171), while the spatial,historical, temporal and geopolitical factors that emerged to govern bodies-and-minds in differential ways, are confined to silence (Soldatic & Grech,2014).”

This special issues includes an introduction and the following articles: 

Grech, S., & Soldatic, K. (2016). Disability in the Global South: The Critical Handbook [International Perspectives on Social Policy, Administration, and Practice (IPSPAP)]. Springer International Publishing AG. DOI: https://doi.org/10.1007/978-3-319-42488-0.

This first-of-its kind volume spans the breadth of disability research and practice specifically focusing on the global South. Established and emerging scholars alongside advocates adopt a critical and interdisciplinary stance to probe, challenge and shift common held social understandings of disability in established discourses, epistemologies and practices, including those in prominent areas such as global health, disability studies and international development. Motivated by decolonizing approaches, contributors carefully weave the lived and embodied experiences of disabled people, families and communities through contextual, cultural, spatial, racial, economic, identity and geopolitical complexities and heterogeneities.

Dispatches from Ghana, Lebanon, Sri Lanka, Cambodia, Venezuela among many others spotlight the complex uncertainties of modern geopolitics of coloniality; emergent forms of governance including neoliberal globalization, war and conflicts; the interstices of gender, race, ethnicity, space and religion; structural barriers to redistribution and realization of rights; and processes of disability representation. This handbook examines in rigorous depth, established practices and discourses in disability including those on development, rights, policies and practices, opening a space for critical debate on hegemonic and often unquestioned terrains.

Highlights of the coverage include:

  • Critical issues in conceptualizing disability across cultures, time and space
  • The challenges of disability models, metrics and statistics
  • Disability, poverty and livelihoods in urban and rural contexts
  • Disability interstices with migration, race, ethnicity, gender and sexuality
  • Disability, religion and customary societies and practice
  • The UNCRPD, disability rights orientations and instrumentalities
  • Redistributive systems including budgeting, cash transfer systems and programming.
  • Global South–North partnerships: intercultural methodologies in disability research.

This much awaited handbook provides students, academics, practitioners and policymakers with an authoritative framework for critical thinking and debate about disability, while pushing theoretical and practical frontiers in unprecedented ways.

Supplementary materials are also available.

Green, A., Abbott, P., & DiGiacomo, M. (2018). Interacting with providers: An intersectional exploration of the experiences of carers of Aboriginal children with a disability. Qualitative Health Research, 28(12), 1923-1932. DOI: https://doi.org/10.1177/1049732318793416. 

Intersectionality has potential to create new ways to describe disparities and craft meaningful solutions. This study aimed to explore Aboriginal carers’ experiences of interactions with health, social, and education providers in accessing services and support for their child. Carers of Aboriginal children with a disability were recruited from an Australian metropolitan Aboriginal community-controlled health service. In-depth, semistructured interviews were conducted with 19 female carers. Intersectionality was applied as an analytical framework due to the inherent power differentials for Aboriginal Australians and carers for people with a disability. Marginalization and a lack of empowerment were evident in the experiences of interactions with providers due to cultural stereotypes and racism, lack of cultural awareness and sensitivity, and poverty and homelessness. Community-led models of care can help overcome the intersectional effects of these identities and forms of oppression in carers’ interactions with providers and enhance access to care.

Haitana, T., Pitama, S., Cormack, D., Clark, M. T. R., & Lacey, C. (2022, September). “If we can just dream…” Māori talk about healthcare for bipolar disorder in New Zealand: A qualitative study privileging Indigenous voices on organisational transformation for health equity. The International Journal of Health Planning and Management, 37(5), 2613-2634. DOI: https://doi.org/10.1002/hpm.3486. 

Objectives: This paper identifies barriers to equity and proposes changes to improve the organisation of healthcare in New Zealand for Māori with bipolar disorder (BD) and their families.

Design: A qualitative Kaupapa Māori methodology was used. Twenty-four semi-structured interviews were completed with Māori with BD and members of their family. Structural and descriptive coding was used to organise and analyse the data, including an analytic frame that explored participants’ critique of attributes of the organisation of healthcare and alignment with Māori health policy.

Results: Transformation to the organisation of healthcare is needed to achieve health equity. Executive management must lead changes to organisational culture, deliver an equity partnership model with Māori, embed cultural safety and redesign the organisation of healthcare to improve wellbeing. Healthcare incentive structures must diversify, develop and retain a culturally competent health workforce. Information management and technology systems must guide continued whole system improvements.

Conclusion: This paper provides recommendations that should be considered in planned reforms to the organisation of healthcare in New Zealand. The challenge remains whether resourcing for an equitable healthcare organisation will be implemented in partial fulfillment of promises of equity in policy.

Harpur, P., & Stein, M. A. (2018). Indigenous persons with disabilities and the Convention on the Rights of Persons with Disabilities: An identity without a home? International Human Rights Law Review, 7(2), 165-200. DOI: https://doi.org/10.1163/22131035-00702002. 

This article analyses how disability human rights protections and processes under the United Nations Convention on the Rights of Persons with Disabilities (CRPD) have responded to the heightened vulnerability created when disability intersects with indigeneity. It considers the evolution of international human rights law instruments for indigenous persons with disabilities. It further examines the drafting history of the CRPD related to indigenous-specific content and examines the crpd Committee’s engagement with the human rights protections and violations of indigenous persons with disabilities. It demonstrates that the CRPD Committee has advanced these rights by acknowledging the rights of indigenous persons in the general course of its work, but has fallen short of adequately recognising the special vulnerabilities that are created when disability and indigeneity intersect. This evaluation is illustrated by expounding on the CRPD Committee’s recommendation in Noble v Australia, a communication brought by an indigenous person with a ‘mental and intellectual disability’ whose indigenous status was not engaged.

Hickey, H. (2020). A personal reflection on indigeneity, colonisation and the CRPD. In E. J. Kakoullis & K. Johnson (Eds.), Recognising human rights in different cultural contexts. Singapore: Palgrave Macmillan. DOI: https://doi.org/10.1007/978-981-15-0786-1_5. 

Huhana Hickey provides an account of the different ways in which indigeneity has been defined historically and in contemporary cultural contexts. She uses her own experience to provide a particular case study of Māori cultural perspectives to disability and the impact of colonialism on the lives of persons with disabilities who are also members of indigenous cultures. Hickey argues that the effects of colonialism on this group continue to the present through Government and community failure to take account of and respect the cultural values and beliefs of Māori people and continuing discrimination. As someone involved in the drafting of the United Nations Convention on the Rights of Persons with Disabilities (CRPD 2006) Hickey explores the unsuccessful attempts made to give the rights of indigenous people with disabilities stronger representation in its articles.

Good, G. A., Lee, J., & McBride-Henry, K. (2023). Parenting during a pandemic: Mothers and disabled children in Aotearoa/New Zealand—A hidden minority. Journal of the Motherhood Initiative for Research and Community Involvement, 14(1), 22.

Every country has its own COVID-19 pandemic story; similarly, every family has their own experiences of lockdowns, isolation, illness, death, struggles, and resiliency related to the pandemic. Although myriad narratives appear about these familial and societal experiences, few explore those of mothers of disabled children; these have been largely invisible, and as a result, this minority group and their needs have failed to be addressed by those who make decisions and plan for public health crises and for the subsequent recovery.

Autoethnography, a qualitative method that coalesces personal experience and research literature to advance sociological understanding, underpins this exploration. The authors are New Zealand/Aotearoa mothers of disabled children. Our approach employs autoethnographic reflection about our pandemic experiences to create mean-ing, forge identities, and explore power structures. Connections of our family stories enable the creation of an understanding of what has happened in our communities.

The authors’ reflections on their pandemic experiences are woven together with stories of how governments, schools, public health organizations, disability organizations, healthcare providers and communities directed us and responded to or failed to address our needs. We have identified five interwoven themes throughout our stories: anxiety, invisibility, devalued lives, coping, and advocacy. Together, as an outcome of the autoethnographic study of our pandemic experiences, we offer ideas for survival to pass on to mothers for future disasters and crises. Furthermore, we have developed recommendations for organizations and others living with disability.

Hayvon, J. C., Cordeiro , V. J., Dunhamn , J., Strömberg Jämsvi , S., Stainbrook , J., & Singhal , N. (2024). Equality in higher education opportunities: Practitioners’ perspectives from global, rural, post-colonial disability. Journal of Praxis in Higher Education, 6(4), 30–47. DOI: https://doi.org/10.47989/kpdc518.

This paper gathers practitioner perspectives on tuition-free online courses and their potential to improve equality in higher education. Through an intersectional lens of race, gender, income, and indigeneity, this paper focuses on the experience of people living with disabilities (PLWD) as a further marginalized sub-population within diverse marginalized populations. Of note, disability-knowledge held by PLWD and by their family members can position them as sensitive and effective healthcare or disability-care providers. At the same time, society often does not grant an easy pathway to this education and licensure. The existing landscape of massive open online courses (MOOCs) may present tuition-free learning, but accreditation can rest upon payment and other complex structures. Even after PLWDs gather financial resources for official accreditation, prospective employers have the autonomy to determine whether this learning is valid. In a global context, low-income families may experience internal competition for financing between PLWD and non-disabled siblings. Securing a future in which payment models and disability-needs are accommodated for in MOOCs can alter multiple life trajectories in the families of PLWD and ensure that the intersectionally marginalized may equally benefit from open education.

Hillier, S., & Vorstermans, J. (2022). Disability and disablement in settler colonial states: Indigenous perspectives of disability since time in memorial. In M. H. Rioux, J. Viera, A. Buettgen, & E. Zubrow (Eds.), Handbook of disability: Critical thought and social change in a globalizing world [Springer Nature Reference: Living Ed.]. Singapore: Springer. DOI: https://doi.org/10.1007/978-981-16-1278-7_41-1. 

This chapter is a journey of learning, focusing on the experiences of Indigeneity, disability, and disablement in the settler colonial states of Canada, Australia, New Zealand, and the United States and how we collectively can work on healing or reconciling. We start by taking up colonization, which for many settler states share numerous elements and functions (removal from land and forced relocation to reserves, residential schools, and removal of children to “care” by the state). We take up three main periods of time: First, learning about notions of disability prior to widespread European contact. Second, using an intersectional lens, we will learn about the initiation of colonization and ongoing processes of colonization impacting Indigenous Peoples in settler states, using the life span as a way to organize this section. Finally, we conclude with our journey toward healing and knowing by discussing the lived and imagined futures that return to Indigenous ways of being, knowing, and relationality that resist Western and settler-state productions and reproductions of disability and disablement.

Ineese-Nash, N. (2020). Disability as a colonial construct: The missing discourse of culture in conceptualizations of disabled Indigenous children. In T. L. Haley & C. T. Jones (Eds.), Sites and Shapes of Transinstitutionalization [Special Issue]. Canadian Journal of Disability Studies, 9(3), 28-51. DOI: https://doi.org/10.15353/cjds.v9i3.645. 

This paper explores the concept of disability through a critical disability lens to understand how Indigenous ontologies are positioned within the dominant discourse of disabled peoples in Canada. This paper draws on the inherent knowledge of Indigenous (predominantly Anishinaabek) communities through an integration of story and relational understandings from Indigenous Elders, knowledge keepers, and community members. Indigenous perspectives paired with academic literature illustrate the dichotomous viewpoints that position Indigenous peoples, most often children, as ‘disabled’ within mainstream institutions, regardless of individual designation. Such positioning suggests that the label of disability is a colonial construct that conflicts with Indigenous perspectives of community membership and perpetuates assimilation practices which maintain colonial harm.

Ineese-Nash, N., Underwood, K., Hache, A., & Douglas, P. (2024). The commodification of care: Precarious custodial relationships, disability, and settler-colonialism. In G. Ciciurkaite & R. L. Brown (Eds.), Disability and the Changing Contexts of Family and Personal Relationships [Research in Social Science and Disability, Vol. 15] (pp. 61-79). Leeds, UK: Emerald Publishing Limited. DOI: https://doi.org/10.1108/S1479-354720240000015006.

In this chapter, we explore the intricate relationships between young disabled children, their families, institutional settings, and disability services in Canada, with an emphasis on the challenges stemming from unstable custodial dynamics and governmental interference. Drawing on data from a 9-year longitudinal Institutional Ethnography across three provinces and one territory, we analyze the experiences of 41 families who have interacted with the child welfare system, foster care, adoption processes, family courts, or other custodial procedures – many of them are Indigenous or live with low income. The historic and ongoing state control and institutionalization of disabled children in Canada are interrogated through the lens of settler-colonialism (Awj, 2017; Disability Rights International, 2021). This chapter scrutinizes constructs framed by colonial narratives, including disabled childhoods, notions of disability, the “best interest of the child,” the archetype of the “good parent,” and the designation of custodial “status.” We present Institutional Ethnography as a method of de-constructing these systems and identifying care principles in the changing context of family.

Ingham, T. R., Jones, B., Perry, M., King, P. T., Baker, G., Hickey, H., Pouwhare, R., & Nikora, L. W. (2022). The multidimensional impacts of inequities for Tāngata Whaikaha Māori (Indigenous Māori with Lived Experience of Disability) in Aotearoa, New Zealand. In M. Perry, A. Calder, & T. Ingham (Eds.), Addressing Disability Inequities: Environments, Society and Wellbeing [Special Issue]. International Journal of Environmental Research and Public Health, 19(20), 13558. DOI: https://doi.org/10.3390/ijerph192013558. 

People with lived experience of disability have poorer health and socioeconomic outcomes than people without it. However, within this population, certain social groups are more likely to experience poorer outcomes due to the impacts of multiple intersecting forms of oppression including colonisation, coloniality and racism. This paper describes the multidimensional impacts of inequities for Indigenous tāngata whaikaha Māori (Māori with lived experience of disability). Semi-structured in-depth interviews were conducted with 28 tāngata whaikaha Māori and their whānau (extended family) using a kaupapa Māori Research methodology. An equity framework was used to analyse the data. The results describe: (1) inequitable access to the determinants of health and well-being; (2) inequitable access to and through health and disability care; (3) differential quality of health and disability care received; and (4) Indigenous Māori-driven solutions. These data confirm that tāngata whaikaha Māori in the nation-state known as New Zealand experience racism, ableism and disablism, compounded by the intersection between these types of discrimination. Recommendations from the data support the inclusion of tāngata whaikaha Māori in decision-making structures, including all policies and practices, along with equal partnership rights when it comes to designing health and disability systems and services.

Ingham, T., Jones, B., King, P. T., Smiler, K., Tuteao, H., Baker, G. & Hickey, H. (2022). Decolonising disability: Indigenous Māori perspectives of disability research in the modern era. In M. H. Rioux, J. Viera, A. Buettgen, & E. Zubrow (Eds.), Handbook of disability: Critical thought and social change in a globalizing world [Springer Nature Reference: Living Ed.]. Singapore: Springer. DOI: https://doi.org/10.1007/978-981-16-1278-7_68-1.

Qualitative research methods show promise in building shared understanding of Indigenous experiences of disability and have the potential to address the power imbalances inherent in Western epistemologies methodologies, particularly (but not exclusively) when it comes to quantitative research.

This chapter explores indigenous Māori research epistemologies and methodologies for disability research in Aotearoa New Zealand. In particular, we highlight the methodologies of pūrākau (storytelling) and wānanga (workshopping) which serve as examples in the richness of Māori-centered understandings that both give prominence to and make sense of Māori experiences. We structure our discourse throughout the chapter within this narrative framework as an exemplar.

The chapter also provides indigenous perspectives from a Global South to identify the critical importance of understanding the ways in which colonization, coloniality, ableism, and racism have intersected in the lived experiences of indigenous disabled tāngata whaikaha Māori/whānau hauā.

Jaffee, L. (2021). Student Movements Against the Imperial University: Toward a Genealogy of Disability Justice in U.S. Higher Education. Berkeley Review of Education, 10(2). DOI: https://doi.org/10.5070/B810249443.

This article explores insurgent knowledge created by student organizers who are collectively challenging institutional complicity with U.S. imperialism, racial capitalism, settler-colonialism, and disability injustice through social movements on U.S. college campuses. Taking Syracuse University as a case study of anti-imperialist student organizing from 1968-1970, I analyze student protest materials—primarily political education leaflets and literature opposing the Vietnam War and anti-Black racism—from the university archives. Following a lineage of anti-imperialist student organizing from the second half of the twentieth century to the present-day student movement for justice in Palestine, I highlight traces of disability within histories of student protest that have largely been framed as extraneous to disability issues and histories on U.S. campuses. My argument is twofold: 1. Student movements opposing Israeli apartheid, U.S. imperialism, and settler-colonialism are also movements for disability justice, and 2. Student movements for disability justice must actively oppose Israeli apartheid, U.S. imperialism, and settler-colonialism. Through collective labor and direct action aimed at transformation over inclusion, student protestors throughout history and today offer a different framing of what a university might do under other, non-white supremacist, heteropatriarchal, and settler-capitalist social relations and economic conditions that impede collective access. The visions put forth by student organizers can inform how we teach and labor at universities to bring our politics and practices in closer alignment with the principles of disability justice.

Jaffee, L. J. (2022). Disability matters: A materialist history of disability under U.S. settler-capitalism. In M. Cole (Ed.), Equality, education, and human rights in the United States: Issues of gender, race, sexuality, disability, and social class. New York: Routledge. DOI: https://doi.org/10.4324/9781003150671-7.

While often thought of as a fixed biological fact, disability is a social and political category. Bodily differences are made meaningful in relation to social, political, and economic contexts, and these meanings are constantly negotiated, shifting across time and place. This chapter offers a materialist history of disability in the U.S., focusing on the ways disability has been defined in relation to changing political-economic forces and shaped in relation to class, race, and gender. The chapter pays particular attention to the disabling of land and bodies via the conditions of settler-capitalism, the possibilities and perils of the fourth industrial revolution for undoing ableism, and some of the implications of the Covid-19 pandemic for disability in/justice.

Johnson, D. E., Fisher, K., & Parsons, M. (2022). Diversifying Indigenous vulnerability and adaptation: An intersectional reading of Māori women’s experiences of health, wellbeing, and climate change. In M. Parsons (Ed.), Indigenous Transformations towards Sustainability: Indigenous Peoples’ Experiences of and Responses to Global Environmental Changes [Special Issue]. Sustainability, 14(9), 5452. DO: https://doi.org/10.3390/su14095452. 

Despite evidence that Indigenous peoples’ multiple subjectivities engender diverse lived experiences both between and within Indigenous groups, the influence of multiple subjectivities on Indigenous peoples’ vulnerability and adaptation to climate change is largely un-explored. Drawing on ethnographic research with Indigenous Māori women in Aotearoa New Zealand, this paper provides empirical evidence that subjectivity-mediated power dynamics operating within Indigenous societies (at the individual and household scale) are important determinants of vulnerability and adaptation which should be considered in both scholarship and policy. Using an intersectional framework, I demonstrate how different Māori women and their whānau (families) live, cope with, and adapt to the embodied physical and emotional health effects of climate change in radically different ways because of their subject positionings, even though they belong to the same community, hapū (sub-tribe), or iwi (tribe). In underlining these heterogenous experiences, I provide an avenue for reconsidering how climate adaptation scholarship, policies, and practices might better engage with the complex, amorphous realities within Māori and other Indigenous communities. I argue it is possible to develop more inclusive, tailored, and sustainable adaptation that considers divergent vulnerabilities and adaptive capacities within Indigenous communities, groups, and societies and supports customised vulnerability-reduction strategies.

Jones, B., King, P. T., Baker, G., & Ingham, T. (2020). COVID-19, intersectionality, and health equity for Indigenous peoples with lived experience of disability. American Indian Culture and Research Journal, 44(2), 71–88. DOI: https://doi.org/10.17953/aicrj.44.2.jones. 

As Māori and tāngata whaikaha (Māori with lived experience of disability) of the nation-state known as New Zealand, we are deeply concerned about the impacts of the COVID-19 pandemic. In this commentary, we invoke intersectionality as an analytical tool for understanding critical issues tāngata whaikaha face in the context of the universal approach encompassing New Zealand’s pandemic response. We propose a “call to action” framework comprising four elements: (1) guaranteeing self-determination for tāngata whaikaha; (2) addressing all forms of racism, ableism, and other structural forms of oppression; (3) rectifying historical injustices; and (4) allocating resources for the pandemic and beyond in alignment with need.

Jones, J., Roarty, L., Gilroy, J., Brook, J., Wilson, M., Garlett, C., McGlade, H., Williams, R. & Leonard, H. (2023). Wangkiny Yirra “Speaking Up” project: First Nations women and children with disability and their experiences of family and domestic violence. Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

First Nations women and children with disability are at greater risk of family and domestic violence (FDV) and its consequences than their non-Indigenous peers. A recent report (Ringland et al., 2022) found that First Nations women with disability had the highest rates of victimisation of any group, with 34.4% recorded as being victims of crime. Despite this, the voices of First Nations people are largely missing from disability research in Australia (Dew et al., 2019).

The purpose of this research was to engage with First Nations women and children and key stakeholders in Western Australia to: gain an understanding of their experiences of FDV, identify factors they believe open them up to the risk of harm, document their observations and experiences of barriers and/or enablers to seeking assistance and support, obtain their views on what works in currently available programs, and make recommendations for future culturally safe prevention and protection programs.

An easy-read version of this report is also available.

King, J. (2022, August). Listening to First Nations voices: Something about us, without us: The intersect between Aboriginal and Torres Strait Islander people, disability and the pursuit for self determination. BRIEF, 49(5), 28-29. 

When you are an Aboriginal or Torres Strait Islander (ATSI) Person with a Disability (ATSIPwD), you do not see yourself as a Person with a Disability (PwD) because society does not view you as a PwD. I have witnessed this cognitive dissonance extend into public policy and although ATSI activists and disability causes have championed for self-determination using the phrase ‘Nothing about us without us’, for ATSIPwDs it can leave us to feel that there is ‘Something about us, without us’. Whether it is in relation to the United Nations Declaration on the Rights of Indigenous People (UNDRIP), the Convention on the Rights of Persons with Disabilities (CRPD), any Commonwealth collated statistics or academic literature, the lack of visibility of ATSIPwDs is both glaring and damning.

Karmiris, M. (2021). De-linking the elementary curriculum from the colonizing Forces of ableism. Journal of Disability Studies in Education, 2(2), 182-198. https://doi.org/10.1163/25888803-bja10011.

What does it mean to teach and learn about becoming human amidst disability and race in the elementary school classroom? This broad question guides my conceptual paper here in a manner that focuses on the fruitful possibilities at the intersections between the fields of disability studies and decolonial studies. The first part of this paper intends to explore how the concepts of “dysconscious racism” (King, 1991, p. 133) and “dysconscious ableism” (Broderick and Lalvani, 2017, p. 894) are useful tools through which to conduct an analysis of how our education system remains rooted in the practices of exclusion and/or conditional inclusion that continue to valorize a subjective self steeped in western colonial logics. Through decolonial studies and Global South disability studies, the second portion of this paper seeks to question the limits of strategies of resistance that reinforce western-centric conceptions of the self while also making a case for interdependence.

Kore, J. (2022, December). YoungDeafDesign: Participatory design with young Deaf children. International Journal of Child-Computer Interaction, 34, 100542. DOI: https://doi.org/10.1016/j.ijcci.2022.100542.

It is common in HCI research to involve children in the design of their own technology. However, no design methods exist to design with young Deaf children. To address this gap, I have created YoungDeafDesign, a design method for designing with young Deaf children. YoungDeafDesign was originally intended to be a design method for working with young Deaf children as equal design partners, according to Druin’s levels of involvement (Druin, 2002) . However, in YoungDeafDesign as it is presented here, the children’s involvement level falls between design partner and informant, as the communication gap between hearing designers and young Deaf children prevents the dialogue which is required for working with children as design partners. The YoungDeafDesign method addresses children’s youth, language level, individual Deafness and cultural Deafness, enabling adult, hearing designers to design technologies with and for this unique group of children.

YoungDeafDesign will be described in this paper through the lens of patterns and themes which are common in designing with children (Korte, 2020) , and which were evaluated for applicability to designing with young Deaf children through a series of twenty-five design sessions conducted with young Deaf children (3–5 years), staff members from the children’s preschool programme in the role of sign language interpreter or support assistant; and at times, the children’s parents. This led to a synthesis of the relevant aspects of existing methods into a new design method for designing with young Deaf children.

The existence of YoungDeafDesign will enable the creation of technologies to assist young Deaf children and their families in ways which address young Deaf children’s needs and abilities.

Krentz, C. (2022). Elusive kinship: Disability and Human Rights in Postcolonial Literature. Philadelphia: Temple University Press.

Characters with disabilities are often overlooked in fiction, but many occupy central places in literature by celebrated authors like Chinua Achebe, Salman Rushdie, J. M. Coetzee, Anita Desai, Jhumpa Lahiri, Edwidge Danticat, and others. These authors deploy disability to do important cultural work, writes Christopher Krentz in his innovative study, Elusive Kinship. Such representations not only relate to the millions of disabled people in the Global South, but also make more vivid such issues as the effects of colonialism, global capitalism, racism and sexism, war, and environmental disaster.

Krentz is the first to put the fields of postcolonial studies, studies of human rights and literature, and literary disability in conversation with each other in a book-length study. He enhances our appreciation of key texts of Anglophone postcolonial literature of the Global South, including Things Fall Apart and Midnight’s Children. In addition, he uncovers the myriad ways fiction gains energy, vitality, and metaphoric force from characters with extraordinary bodies or minds.

Depicting injustices faced by characters with disabilities is vital to raising awareness and achieving human rights. Elusive Kinship nudges us toward a fuller understanding of disability worldwide.

Kress, M. M. (2017). Reclaiming disability through pimatisiwin: Indigenous ethics, spatial justice, and Gentle Teaching. In A. Gajewski (Ed.), Ethics, Equity, and Inclusive Education [International Perspectives on Inclusive Education, Vol. 9] (pp. 23-57). Bingley: Emerald Publishing Limited. DOI: https://doi.org/10.4324/9781003204572-15.

The situating of pimatisiwin as a framework for spatial justice and self-determination aids educators in strengthening their understandings of Indigenous knowledges to support an authentic inclusion of Indigenous students with disabilities. Through the sharing of Canada’s colonial history, and by critically examining the principles of care within special education, the author exposes its relationship with ableism, normalcy, eugenics, and white privilege to show how Indigenous peoples continue to be marginalized in the twenty-first century. This justice work asks educators to shift their perspectives of inclusion and wellness through the insertion of an Indigenous lens, one to help them see and hear the faces and voices of disabled Aboriginal children and their kinships. The chapter discusses the social model of disability, the psychology of Gentle Teaching, Indigenous ethics, and principles of natural laws through the voices of Nehiyawak and other knowledge keepers, in order to suggest an agenda for educators to come to an understanding of an emancipatory and gentle education. Spatial justice and Indigenous epistemologies merge as synergistic, inclusive, and holistic entities, to support Aboriginal children and youth as both they and those who teach learn to celebrate disabled ontologies. The chapter concludes by presenting how Gentle Teaching and Indigenous ways of knowing should be honored in this quest of creating an equitable, caring, and inclusive society for all disabled Indigenous children and youth.

Kristofik, A., & Demps, K. L. (2024). Reimagining support for autistic Indigenous children in the United States: Addressing under-identification and service gaps. Neuropsychiatric Disease and Treatment, 20, 1503–1511. DOI: https://doi.org/10.2147/NDT.S466098.

Although the original purpose of this article was to provide a comprehensive review of services provided for autistic children among Indigenous communities in Texas, USA, the authors’ encounter with a significant paucity in availability of data and relevant reports on Indigenous services for ASD spurred the choice of a perspective article instead as it allows a more critical view into the pitfalls surrounding the state of autism services. The meager documentation availability presents a dilemma for both researchers and Indigenous communities since it often leads to misrepresentations of data, and limits understanding of existing support systems. This perspective article addresses these issues and serves to highlight the complexity of collecting data among Indigenous populations across the United States. Specifically, it emphasizes the challenges faced in Texas, shedding light on the various barriers such as variations in cultural identity, government trust, cultural awareness, and disability identity that impede data-collection efforts in providing effective services to Indigenous populations. We advocate for a radical transformation in understanding how to approach and report the prevalence of possible ASD autism among Indigenous children to provide effective and tailored services. Ultimately, this transformation aims to secure the necessary data to provide services that effectively complement the existing support systems within individual Indigenous communities to enable their fullest and most equitable participation in society. The discussion calls for a comprehensive roadmap to achieve the goal of increasing Indigenous data collection and availability while the conclusion outlines a suggested roadmap to achieve the goals of increasing data generation and available services to Indigenous communities, and ultimately, improving services for Indigenous children with ASD in Texas and their families.

Kuppers, P. (2013). Decolonizing disability, indigeneity, and poetic methods: Hanging out in Australia. Journal of Literary & Cultural Disability Studies, 7(2), 175-193. DOI: https://doi.org/10.3828/jlcds.2013.13.

The article witnesses encounters in Australia, many centered in Aboriginal Australian contexts, and asks what arts-based research methods can offer to intercultural contact. It offers a meditation on decolonizing methodologies and the use of literary forms by a white Western subject in disability culture. The argument focuses on productive unknowability, on finding machines that respectfully align research methods and cultural production at the site of encounter.

Kuppers, P. (2016). Landings: Decolonizing disability, indigeneity and poetic methods. In P. Block, D. Kasnitz, A. Nishida, & N. Pollard (Eds.), Occupying disability: Critical approaches to community, justice, and decolonizing disability. Dordrecht: Springer. DOI: https://doi.org/10.1007/978-94-017-9984-3_5. 

The article witnesses encounters in Australia, many centered in Aboriginal Australian contexts, and asks what arts-based research methods can offer to intercultural contact. It offers a meditation on decolonizing methodologies and the use of poetry and performance by a white Western subject in disability culture. The argument focuses on productive unknowability, on finding machines that respectfully align research methods and cultural production at the site of encounter.

Lapierre, M. (2023). Disability and Latin American indigenous peoples. Disability & Society. DOI: https://doi.org/10.1080/09687599.2023.2192381.

Disability among Latin American indigenous peoples is frequent and has particular characteristics. On the one hand, people understand and experience disability from their own worldview and cultural practices, but on the other hand, these cultural characteristics coexist with the reality of a disability produced by colonialism, colonization and forced assimilation into the states. Additionally, the socioeconomic conditions in which indigenous peoples live, as well as the political violence to which they are subjected, create a complex panorama that challenges disability studies to dialogue with other philosophies. Decoloniality, interculturality, epistemologies of the South, and indigenous thought can be approaches that discuss and problematize the study of disability in indigenous cultures from a more just and situated perspective.

Larkin-Gilmore, J., Callow, E., & Burch, S. (2021, Fall). Indigeneity & Disability: Kinship, Place, and Knowledge-Making [Special Issue]. Disability Studies Quarterly, 41(4). DOI: http://dx.doi.org/10.18061/dsq.v41i4. 

“This special issue centers on Indigeneity and disability. Reciprocity is our question, practice, and aspiration: What is possible when we Indigenize disability studies (DST) and when we fully embed disability studies in Native American Indigenous studies (NAIS)?”

This special issue includes the following articles, divided into three sections, Kinship, Place, and Knowledge Making:

Liasidou, A. (2022). Decolonizing inclusive education through trauma-informed theories. Scandinavian Journal of Disability Research, 24(1), 277-287. DOI: https://doi.org/10.16993/sjdr.951.

Notwithstanding its noble orientations and social justice foundations, inclusion has been contested, interrogated, and subjected to multiple interpretations and enactments. Inclusive education has been, inter alia, characterized as a neo-colonial project that is embroiled in and reinforces geopolitical power asymmetries and oppressive regimes. The article suggests that the enduring legacy of colonial perspectives needs to be problematized and challenged through a trauma-responsive lens that captures the traumatizing effects of colonialism/ty on the ‘lived’ realities of disabled and other disenfranchised groups of students. Trauma is a constituent element of intersectional oppression stemming from and imbricated in conditions of colonial structures of power that conceal and legitimize social inequalities, extreme poverty, malnutrition, violence, substandard childcare, racism, and other ‘cultural’ traumas. This is an issue that highlights the imperative of developing theories of inclusion that acknowledge and address the intersections of colonialism/ty, disability and trauma and their impact on educational accessibility, participation, and achievement.

Lieffers, C. (2022). Imperial mobilities: Disability, Indigeneity, and the United States West, 1850-1920. In E. Cleall (Ed.), Global histories of disability, 1700-2015: Power, place and people. New York: Routledge. DOI: https://doi.org/10.4324/9780429323980-8. 

This chapter uses three stories of artificial limbs and Indigenous peoples to examine the complex relationships between American imperialism, disability, and technology that emerged as the United States expanded westward in the nineteenth century. As the stories in this chapter show, ableist curative violence was manifest in the imperialist’s desire to identify what he classed as intolerable injury and repair it using medical expertise, to eliminate what he saw as pathologically primitive cultures and ways of life, and to take what he perceived as underused landscapes and press them into service. Paul Kramer (2011) has defined imperialism as ‘a dimension of power in which asymmetries in the scale of political action, regimes of spatial ordering, and modes of exceptionalizing difference enable and produce relations of hierarchy, discipline, dispossession, extraction, and exploitation.’ Imperial ableism, as I term it, trusted in scientific and medical experts and their technologies to assert this power to assess and to right Indigenous bodies and minds, as well as the cultures in which they lived and the landscapes with which they were entwined.

Lovern, L. (2014). Embracing difference: Native American approaches to disability. In Special Section: Disability Justice and Spirituality. Tikkun, 29(4), 37–40. DOI: https://doi.org/10.1215/08879982-2810110.

“Most U.S. progressives share the view that the destigmatization of “disability” is a positive thing. Translating that vision into widespread social practice, however, is proving difficult to do. The U.S. mainstream has much to learn from Native American communities, many of which have lived experience with non-stigmatizing approaches to differences in community members’ talents and abilities.

Western knowledge systems establish opposition concepts such as day/night, good/bad, and able/disabled. These dichotomies form the basis of Western social hierarchies by establishing certain identities as superior and others as inferior, and they shape how people with disabilities are defined and treated within Western communities and institutions.

While there is no single, unified Native American culture, language, spirituality, or way of being, it is generally accurate to say that Native American worldviews do not adhere to this same dichotomous logic structure. Instead, they focus on an interrelatedness of all things. It is useful to draw generalizations such as these in order to illustrate how Native American approaches to disability offer a counter-model to Western approaches” (p. 37).

Lovern, L. L., & Locust, C. (2013). Native American communities on health and disability: A borderland dialogues. New York: Palgrave Macmillan. DOI: https://doi.org/10.1057/9781137312020. 

This volume examines concepts of disability and wellness in Native American communities, prominently featuring the life’s work of Dr. Carol Locust. Authors Locust and Lovern confront the difficulties of translating not only words but also entire concepts between Western and Indigenous cultures, and by increasing the cultural competency of those unfamiliar with Native American ways of being are able to bring readers from both cultures into a more equal dialogue. The three sections contained herein focus on intercultural translation; dialogues with Native American community members; and finally a discussion of being in the world gently as caregivers.

Mackey, H. J. (2018). Towards an Indigenous leadership paradigm for dismantling ableism. In H. Manaseri & J. Bornstein (Eds.), Dismantling Ableism: The Moral Imperative for Leaders [Special Forum]. Review of Disability Studies: An International Journal, 14(3). 

The purpose of this article is to propose an Indigenous leadership paradigm for dismantling ableism. I begin by defining ableism within the context of school leadership, then apply an Indigenous ontological and epistemological framework to strategies educational leaders can use to dismantle cultures of ableism within school communities.

Manhique, J., Amos, A. (2022). Role of culture and legacy of colonialism in qualitative research methods with persons with disabilities in the Global South. In M. H. Rioux, J. Viera, A. Buettgen, & E. Zubrow (Eds.), Handbook of disability: Critical thought and social change in a globalizing world [Springer Nature Reference: Living Ed.]. Singapore: Springer. DOI: https://doi.org/10.1007/978-981-16-1278-7_44-1. 

In this chapter the authors reflect on the ability/possibility of qualitative research methods to enable persons with disability in the Global South to conceptualize disability and reflect on their lived experience. Disability studies theorists have recognized the importance of qualitative research methods in empowering persons with disabilities by lifting their voices. In this chapter we reflect on how research on disability in the Global South has been done. The chapter focuses on the case of persons with epilepsy and psychosocial disabilities (in Malawi) and persons with disabilities more generally (in Mozambique). Based on our own work as early-stage researchers, we reflect on our experience of engaging persons with disabilities as informants. The chapter highlights the role of culture and the legacy of colonialism as issues that researchers must deal with to ensure that disability studies in the Global South is at the service of those with disabilities and cease from engaging in predatory practices.

Medak-Saltzman, D., Misri, D., & Weber, B. (2022). Decolonizing time, knowledge, and disability on the tenure clock. Feminist Formations 34(1), 1-24. DOI: http://doi.org/10.1353/ff.2022.0000. 

We consider the tenure clock’s enmeshment in the neoliberal academy’s settler colonial and ableist modes of organizing labor and valuing knowledge, modes in turn informed by heteropatriarchal spatiotemporal logics. The tenure clock in the settler academy relies on labor performed by those positioned outside of its time—such as those in temporary or semi-temporary positions, staff, graduate students, and undergraduate students. Our motivation in tracing these logics and formulating feminist strategies to undo them stems directly from observing “faculty with disabilities” at our university struggling against the tenure clock; as well as seemingly abled women faculty, faculty of color, and contingent faculty, who have strained against the academic clock and ended up debilitated in the process. We articulate ways in which more collaborative understandings of university culture and knowledge production might serve to challenge the peculiar temporalities produced by the tenure clock. Listening and learning at the intersections of feminist, Indigenous, and disability studies scholarship teaches us to work toward imagining a different approach to tenure, and from there, the way to a different academy.

Mitchell, D. T., & Snyder, S. L. (2023). Precarity and the global dispossession of indigeneity through representations of disability. In M. Fernández-Santiago & C. M. Gámez-Fernández (Eds.), Representing vulnerabilities in contemporary literature (pp. 17-32). New York: Routledge. DOI: https://doi.org/10.4324/9781032130323-2. 

This chapter analyzes representations of disability in three key historical novels about indigenous people under Western colonialism: O. A. Bushnell’s The Return of Lono (1956), Leslie Marion Silko’s Ceremony (1977), and William Vollmann’s Fathers and Crows (1992). Each work reaches back from a future moment to exhume past violence and the continuing efforts of colonialism in the Americas along with its attendant genocidal impact. 

Murdock, E. G. (2022). Terrortories: Colonialism’s built environments as structural disablement. Critical Philosophy of Race, 10(1), 106-127. DOI: https://doi.org/10.5325/critphilrace.10.1.0106. 

This article proceeds from the thesis proposed by Frantz Fanon that colonialism, specifically settler colonialism, is a world-destroying structure that the colonized witness as a “veritable apocalypse.” Settler colonialism is apocalyptic not only in the sense that it attempts to permanently destroy and make irretrievable various other Indigenous worlds and ways of being-in-the-world, but also in that it builds the settler colonial world in, on, and with Indigenous lands and bodies. I read Fanon as proposing that settler colonialism builds apocalyptic worlds with the murdered worlds of the colonized and then forces the colonized to navigate and embrace these violent and traumatic landscapes, which I call terrortories. I argue this is directly connected to Fanon’s revolutionary psychiatric work and practice to decolonize and disalienate colonial medical and psychiatric facilities as structures of disablement, which requires the abolition of settler colonialism altogether.

Moya, L., & Bertie, J. A. (2018). Crip posthumanism and Native American Indian postanthropocentrism: Keys to a bodily perspective in science. In M. Ruzzeddu (Ed.), Systemic Sociology and Innovation [Feature Issue]. International Review of Sociology, 28(3), 492-509. DOI: https://doi.org/10.1080/03906701.2018.1478688. 

The dominant thought in the Western Culture, put the soul first and despised the body, generating distinctions and hierarchies in which the spiritual or immaterial was considered superior to the corporeal or material. But the bodies have not allowed themselves to be reduced to these dichotomous patterns. The queer discovered the body, worked with it, but returned to the field of immateriality in which the identity is lodged. The crip has completed the gesture of the queer entering fully into the field of the body, denaturalizing categories (deficiency and disability) and interpreting it as radically interdependent. However, in the absence of tradition in dealing with the body, both in reflection and politics, we are inspired by other cultures that always put corporeality in the foreground. The Native American Indians are explicit in terms of contrast between humans and non-humans, because for them there is a unique culture with multiple natures, as opposed to Western, because we believe in plurality of cultures and in a uniform nature. In order to coexist with this diversity, the West has invented ‘cultural relativism’ and ‘multiculturalism’, while the Native American Indians have developed a ‘multinaturalism’ with their ‘perspectivism’. We propose to denominate perspectivism a modality of science and politics that could manifest the radical influence of bodies.

Nguyen, X. T., Mitchell, C., & Bernasky, T. (2022). Qualitative visual methods in research with girls and women with disabilities in the Global South. In M. H. Rioux, J. Viera, A. Buettgen, & E. Zubrow (Eds.), Handbook of disability: Critical thought and social change in a globalizing world [Springer Nature Reference: Living Ed.]. Singapore: Springer. DOI: https://doi.org/10.1007/978-981-16-1278-7_16-1.

This chapter examines how Participatory Visual Methodologies can be used to create more inclusive and accessible spaces with disabled people in the Global South. Drawing on a 4-year research project, funded by the Social Sciences and Humanities Research Council of Canada (2016–2020) with girls and women with disabilities in Vietnam, we argue that a decolonial Participatory Visual Methodology (PVM) approach is critical for centering the perspectives of girls and women with disabilities in spaces where they may have previously been excluded. This work is important for disability rights because it creates a more transformative approach to social justice in communities in the global South.

Ohajunwa, C. O., & Sefotho, M. M. (2024). Epistemologies of disability from the Global South: Towards good health. In L. Ned, M. R. Velarde, S. Singh, L. Swartz, & K. Soldatić (Eds.), The Routledge International Handbook of Disability and Global Health. London: Routledge. DOI: https://doi.org/10.4324/9781003228059-4.

The understanding ascribed to disability within contexts informs how the concept is perceived and researched in academia. Hues of this understanding are perceived within the conceptualisation, research processes and outcomes of research to influence the lived experience of disability. Exploration of epistemologies of disability provides the knowledge and understanding of disability from the margins. Africa is in the Global South, within a shared history of marginalisation and subjugation of its knowledge systems from the Global North. Therefore, this chapter aims to discuss and present epistemologies of disability from the African context. The chapter argues for epistemic justice and relevance of exploring the understanding of disability from the African perspective, to influence academic research and practice within the field of disability studies. This aligns with the Sustainable Development Goals (Goal 3): Good health and well-being of persons with disabilities. Emerging from the reflections and discussions, recommendations highlighting possible ways forward for disability research within academia in Africa are envisaged.

Padilla, A. (2021). Disability, intersectional agency, and Latinx identity: Theorizing LatDisCrit counterstories [Interdisciplinary Disability Studies]. London: Routledge. https://doi.org/10.4324/9781003084150.

This interdisciplinary volume links dis/ability and agency by exploring LatDisCrit’s theory and activist emancipatory practice. It uses the author’s experiential and analytical views as a blind brown Latinx engaged scholar and activist from the global south living and struggling in the highly racialized global north context of the United States.

LatDisCrit integrates critically LatCrit and DisCrit, which look at the interplay of race/ethnicity, diasporic cultures, historical sociopolitics, and disability within multiple Latinx identities in mostly global north contexts, while incorporating global south epistemologies. Using intersectional analysis of key concepts through critical counterstories, following critical race theory methodological traditions, and engaging possible decoloniality treatments of material precarity and agency, this book emphasizes intersectionality’s complex underpinnings within and beyond Latinidades. Through a careful interplay of dis/ability identity and dis/ability rights/empowerment, the volume opens avenues for intersectional solidarity and spaces for radical transformational learning.

Pino-Morán, A P., Rodríguez-Garrido, P., & Lapierre, M. (2023, July). Wild, indigenous, lame, invalid: Anti-ableist epistemologies of the South. Saude soc. 32(2), e211010en. DOI: https://doi.org/10.1590/S0104-12902023211010en.

The aim of the article was to present a first approach to an epistemological proposal that reflects on and deals with the construction and legitimation of knowledge generated from abject, abnormal, or crippled corporeities geopolitically located in the South. It pays special attention to the sex-gender-ability system in the social and epistemological organization of knowledge. In this development, we identify a positionality and wasted wealth for regional social analysis and transformation as a result of a modern colonial order. Hence, this proposal is inscribed within the Latin American critical thinking to reflect on those other places of abject enunciation.

Puszka, S., Walsh, C., Markham, F., Barney, J., Yap, M., & Driese, T. (2022, November). Community-based social care models for Indigenous people with disability: A scoping review of scholarly and policy literature. Health & Social Care in the Community, 30(6), e3716-e3732. DOI: https://doi.org/10.1111/hsc.14040. 

Disability is experienced and understood by Indigenous people internationally in distinct ways from other populations, requiring different approaches in disability services. Furthermore, Indigenous populations access disability services at low rates. In response, policymakers, service providers and Indigenous organisations have developed specific models of care for Indigenous people with disability. Social care services, comprising personal care, transport and social activities, can support Indigenous people with disability to live with their families and in their communities. However, little is known about the range of social care models for Indigenous people with disability. To inform policy and practice, we conducted a scoping review of community-based models of social care designed to meet the needs of Indigenous peoples in Australia, Aotearoa New Zealand, Canada and the United States. Our methods were informed by best practice scoping review principles and a collaborative approach that centred Indigenous voices within research appraisal and project governance processes. Literature searches (conducted March–April 2021) yielded 25 results reporting on 10 models of care. We identified two over-arching themes (funding and governance arrangements; service delivery design) that encompass nine key characteristics of the included models. Our analysis shows promising practice in contextually relevant place-based social activity programs, support and remuneration for family carers and workforce strategies that integrate Indigenous staff roles with kinship relationships and social roles. While more research and evaluation are needed, disability funding bodies and service systems that facilitate these areas of promising practice may improve the accessibility of social care for Indigenous peoples.

Puszka, S., Walsh, C., Markham, F.,  Barney, B., Yap, M., & Dreise, T. (2022). Towards the decolonisation of disability: A systematic review of disability conceptualisations, practices and experiences of First Nations people of Australia. Social Science & Medicine, 305, 115047. DOI: https://doi.org/10.1016/j.socscimed.2022.115047.

In many settler-colonial countries, Indigenous people do not access disability services at rates commensurate with disability prevalence. Existing research suggests that services often do not reflect Indigenous values and social practices, impacting on accessibility. Furthermore, disability services have historically been implicated in processes of colonisation. There is an urgent need to decolonise disability services. Understanding Indigenous knowledge and experience of disability is a necessary step towards achieving this. We systematically reviewed the disability conceptualisations, practices and experiences of First Nations peoples of Australia. Twelve studies met inclusion criteria. There was a consensus among these studies that Western constructs of disability do not resonate with many First Nations people across Australia. The studies reported that many First Nations people conceptualise most disabilities as unremarkable conditions that reflect the normal range of human diversity, although some conditions may be associated with social stigma. Inclusive attitudes and practices of caregiving in First Nations families facilitate the participation of First Nations people with disabilities in family and community life. However, ableism and racism in broader society combine to exclude many First Nations peoples with disabilities from public spaces and from labour markets. Disability services regularly fail to reflect First Nations values and social practices, and can lead to further disempowerment and marginalisation due to diagnostic processes; displacement from country and communities; gendered discrimination; and poor relationships with service providers. We argue that intersectional experiences of colonialism, racism, ableism and sexism, particularly in disability services, can lead to the marginalisation of First Nations participants and families. The decolonisation of disability services requires services to embrace diverse First Nations values and practices associated with human capability, social participation and caregiving. Decolonising disability services also necessitates First Nations control of the governance of disability services and reform across service, organisational, systemic and conceptual levels.

Rabang, N. J., West, A. E., Kurtz, E., Warne, J., &  Hiratsuka, V. Y. (2023). Disability decolonized: Indigenous peoples enacting self-determination. Developmental Disabilities Network Journal, 3(1), Article 11. 

Populations researched often have little if any input in the means of data collection, analysis, or authorship of the findings published. They are excluded from participating in the scientific methods even though they are the subject of the content that is being produced. This is true for Indigenous populations and the disability community around the globe. Researchers usually use colonial methodology that does not encompass the values of these communities or have their well-being in mind. This paper examines the history of colonization and how it has infiltrated science and inhibits self-determination of Indigenous peoples. Indigenous communities need to have the means and power for self-determination. For individuals with disabilities, this includes rights to services and programs that give the respect and person-centered care they deserve to make informed decisions about their lives. Moreover, there is a recognized need for culturally appropriate services that empower American Indian and Alaska Native (AI/AN) people with disabilities to lead independent lives in their own communities—urban or rural. AI/AN cultures may view disabilities differently than those in the mainstream U.S. Barriers and challenges for AI/AN individuals with intellectual and developmental disabilities (IDD) and AI/AN families of individuals with IDD in access to services include inadequate funding, personnel shortages, housing shortages, lack of coordination among agencies, lack of consultation with tribes, and problems identifying persons eligible for services. AI/AN-specific programs that have begun to bridge the gap in access to and development of culturally competent services such as Oyáte Circle and development of collegiate courses focused on AI/AN disabilities issues. There remains a need for partnership with AI/AN tribes for disability services and incorporation of AI/AN people with disabilities as equitable partners in program development and implementation. To reach a full decolonization of IDD health care and fully embrace diversity, equity, and inclusion (DEI) principles, individuals in these communities need to be viewed as experts in their journey of resilience.

Rice, M., & Argüello de Jesús, J. T. (2024). Decolonizing digital accessibility within land/water realities using minimal computing. Learning, Media and Technology Latest Articles, 1–14. DOI: https://doi.org/10.1080/17439884.2024.2394471.

The purpose of this essay is to conceptualize accessibility in digital education for school children through a minimal computing perspective. This perspective prioritizes the contextual, social, and relational as part of the ethic of minimal computing mantra to consider What. We. Need. To achieve our goals, we begin with a story from a classroom in rural New Mexico, then we problematize definitions of accessibility for computing in educational settings considering how an identification as having disabilities is situated within colonial monolingual/monocultural structures that position minds and bodies as deficient. We connect these structures to capitalistic educational technology movements like using personalized instructional materials that do little to support the identities of children in spaces like the rural Southwest. Finally, we highlight what accessibility might look like as conceptualized from a land/water perspective where children’s connections to their current realities are given precedence.

Rice, C., Dion, S. D., & Chandler, E. (2021, Spring). Decolonizing disability through activist art. In E. Brewer, B. Brueggemann, J. Gallagher, & K. Henry (Eds.), Disability Studies, In Time [Feature Issue]. Disability Studies Quarterly, 41(2). DOI: https://doi.org/10.18061/dsq.v41i2.7130. 

This paper mobilizes activist art at the intersections of disability, non-normativity, and Indigeneity to think through ways of decolonizing and indigenizing understandings of disability. We present and analyze artwork produced by Vanessa Dion Fletcher, the first Indigenous disability-identified Artist-in-Residence for Bodies in Translation (BIT), a research project that uses a decolonized, cripped lens to cultivate disabled, D/deaf, fat, Mad, and aging arts on the lands currently known as Canada. We begin by setting the context, outlining why disentangling the disability, non-normativity, and Indigeneity knot is a necessary and urgent project for disability studies and activisms. Drawing on Indigenous ontologies of relationality, we present a methodological guide for our reading of Dion Fletcher’s work. We take this approach from her installation piece Relationship or Transaction?, which, we argue, foregrounds the need for white settlers to turn a critical gaze on transactional concepts of relationship as integral to a decolonized and an indigenized analysis of disability and non-normative arts. We then centre three original pieces created by Dion Fletcher to surface some of the intricacies of the Indigeneity/disability/non-normativity nexus that complicate recent discussions about recuperating Indigenous concepts of bodymind differences across white supremist settler colonial regimes on Turtle Island (North America) that seek to debilitate Indigenous bodies and lives. We intervene in these debates with reflections on what might be created—and what we might learn—when the categories of Indigeneity and (Western conceptions of) disability and non-normativity are understood as contiguous, particularly focusing on meaning-making within Dion Fletcher’s developing oeuvre.

Rivas Velarde, M. C. (2017, October). Addressing double layers of discrimination as barriers to health care: Indigenous peoples with disabilities. ab-Original, 1(2), 269-278. DOI: https://doi.org/10.5325/aboriginal.1.2.0269. 

Multiple or aggravated forms of discrimination have not been properly dealt with in health systems. This article reports on the findings of three case studies conducted in Australia, Mexico, and New Zealand that look at the experiences of Indigenous persons with disabilities accessing health care. The findings show that health systems in these three countries have not sufficiently addressed barriers to health care arising from aggravated forms of discrimination, such as the intersection between disability and indigeneity. Findings reveal also how both interpersonal and systematic discrimination emerged from protocols and procedures that often had no discriminatory intent but had a disproportionately negative impact on populations such as Indigenous persons with disabilities. The article also offers recommendations on how to improve awareness and cultural competency to tackle discriminatory practices in order to improve health access and effective adherence of Indigenous peoples in health care settings.

Rohman, A., & Pitaloka, D. (2023). Disconnected and disabled during the pandemic: Toward more inclusive pandemic response plans in the Global South. Journal of Librarianship and Information Science. DOI: https://doi.org/10.1177/09610006231207657.

This study centers on the information world of Persons with Disabilities (PwD) living in the Global South during the COVID-19 pandemic. The intersection between information practices and disability studies have been mainly situated within the context of the Global North although the pandemic has perpetuated the global power imbalance between rich and poor countries. Based on an analysis of qualitative data collected from PwD in Vietnam during the pandemic, we found that the boundaries between individual, social, and professional domains blurred as the PwD used the same digital platforms accessible and affordable for them to meet different information needs arising from the continuous shifts and disruptions the pandemic had brought to their everyday life. The platforms also allowed the PwD to make stronger connections with themselves, others with disability, and the country during difficult times. In tandem, the PwD’s information world was characterized by the need to protect themselves from contracting the virus and to follow official pandemic response guidelines. The findings demonstrate the importance of centering disability rights and digital rights in pandemic preparedness, response, and recovery plans, particularly in countries with limited resources in Southeast Asia.

Russette, H., Hill, S. B., & Goldman, A. (2020, August 12). Teaching the intersectionality of disability, American Indians, and rurality at tribal colleges. Tribal College: Journal of American Indian Higher Education.

“At the University of Montana, course offerings did not address the intersection of disability, American Indian populations, and public health until recently. This course gap was problematic because American Indians and Alaska Natives experience a high prevalence of disability which is partially attributed to reservations being located in rural settings, particularly in Montana. From this deficit, the University of Montana Rural Institute for Inclusive Communities (RIIC), a University Center for Excellence in Developmental Disabilities, secured federal funding through the U.S. Department of Health and Human Services’ Administration on Community Living to support two graduate-level diversity fellowship positions and to develop a community-grounded public health and disability course appropriate to the 12 Montana-based Native nations. RIIC leadership recognized the need to provide training to professionals working with American Indian communities. In 2018, two fellows and a staff mentor started a year-long process to gather resources, develop a curriculum, and teach a course called ‘The Intersectionality of Disability, American Indians, and Rurality’ through the Native American Studies Department at the University of Montana.” 

Sadlier, S. A., Stein, P. J. S., & Stein, M. A. (2024). Disability, indigeneity, and climate justice. In R. J. Moore (Ed.), Climate change and mental health equity (pp. 205–233). Cham: Springer. DOI: https://doi.org/10.1007/978-3-031-56736-0_8.

The climate crisis both uniquely and disproportionately impacts marginalized populations, including persons with disabilities, indigeneity, and intersectional identities. Indigenous Peoples with disabilities’ cultural connection to ancestral land and water is being profoundly threatened by climate change against a backdrop of disability discrimination, socioeconomic marginalization, and intergenerational trauma that affects their mental and physical well-being. Marginalized populations are confronted by the failure of governments to act and floundering international climate negotiations. Responding to this existential crisis, persons with disabilities and Indigenous Peoples are at the forefront of human rights-based strategic climate litigation. Indigenous Peoples with disabilities are powerful change agents in the fight for climate justice due to their deep cultural understanding of the connection of people to land, ecosystems, and biodiversity, and their lived experience of climatic harm. We consider how the principles of participation, equity, and accountability are vital to ensure the development and implementation of climate adaptation and mitigation plans, policies, and measures that increase the well-being of Indigenous Peoples with disabilities. Governments, policymakers, and institutions, led by and with Indigenous communities and their organizations of persons with disabilities, must operationalize disability climate justice and the right to a healthy environment to promote the well-being of Indigenous Peoples with disabilities worldwide as well as the well-being of all society.

Saisi, B. (2022). Barred by the maddening state: Mental health and incarceration in the heterosexist, anti-Black, settler colonial carceral state. In M. J. Coyle & D. Scott (Eds.), The Routledge international handbook of penal abolition. New York: Routledge. DOI: https://doi.org/10.4324/9780429425035-34.

This chapter examines how reformist policies around mental health care in prisons reproduces the logics of carcerality whereby the medicalization of mental distress is utilized as a means to expand the carceral state. This chapter traces past and contemporary histories that illustrate the relationship between institutionalized psychiatry and the pathologization of Black and Indigenous peoples and nonnormative gender and sexual expressions to justify their containment in order to maintain the White supremacist nation-state. Through analyzing newsletters written by incarcerated and formerly incarcerated peoples in women’s prisons and their experiences of mental distress alongside liberal reformist legal literature, a critical race, feminist, and disability analysis of psychological and psychiatric institutions is revealed to be germane to the overall project of penal abolition.

Sánchez Peña, M. A. (2024). Sculpting aesthetic experiences through autistic indigenous knowledge. In R. Rozema & C. Bass (Eds.), Autistic Aesthetics [Feature Issue]. Ought: The Journal of Autistic Culture, 5(2), Article 8. DOI:
https://doi.org/10.9707/2833-1508.1171.

The intersection between the autistic mind and the experience of aesthetic elements sculpts a distinct lens through which individuals could explain and appreciate the human experience. Differences between neurotypicals and autistics in terms of sensory experience, cognition and communication, combined with knowledge produced by the Philosophy, Psychology, and Anthropology fields in Aesthetics permit the application of the Neurodiversity Paradigm as a source to explain the perception of aesthetics in the collective. The complexity of these experiences in autistic people not only expands deeper comprehension on aesthetic experiences and all its relativisms, but also illustrates neurodiversity as a form of cultural diversity and challenges neuronormative notions of beauty.

Senier, S. (2021). Disability, Blackness, and Indigeneity: An invitation to a conversation. In T. A. Pickens (Ed.)., Blackness and Disability: This. Is. The. Remix. or I Thought I Told You That We Won’t Stop [Special Issue]. CLA Journal, 64(1), 166-173. DOI: http://doi.org/10.1353/caj.2021.0011. 

The author “…offer[s] CLAJ readers and colleagues a few insights into what has been occurring in the field of Indigenous Studies and Disability, in the spirit of inviting us all to think through this ‘wide range of entry points’” (p. 167).

Senier, S., & Barker, C. (2013). Disability and Indigeneity [Special Issue]. Journal of Literary & Cultural Disability Studies, 7(2). 

“…the articles [in this special] issue multiple calls for decolonization, both material and discursive in nature. They collectively discuss the decolonization of disability studies, of genetic science, of research methodologies, of the boarding school, and of medical institutions. We would argue that far from signaling some loose or amorphous concept of social justice, these articles use the term decolonization in its most precise and rigorous sense: as a form of ‘giving back to,’ or (even better) ‘refusing to take from,’ indigenous peoples. While this notion of ‘giving back’ might be aspirational rather than a readily achievable goal in many of the cases considered in the present special issue, as a principle it certainly upholds the productive notion of ‘world-making’ (or re-making) discussed above. To ‘decolonize’ disability studies, as conceptualized by the authors collected here, is to commit to a form of disability studies praxis that refuses to impose non-indigenous frameworks of health or disability upon native communities, whether these might be medical or more progressive social models” (p. 137).

Articles in this special issue include an introduction, two book reviews and the following articles:

Shah, M.H. (2024). Addressing equity and disability gaps in immigrant and refugee communities: A psycho-socio-educational framework. In G. Bennett & E. Goodall (Eds.), The Palgrave Encyclopedia of Disability. Cham: Palgrave Macmillan. DOI: https://doi.org/10.1007/978-3-031-40858-8_291-1.

The intersection of disability, migration, and mental health presents several challenges and opportunities for fostering equity and inclusion in immigrant and refugee communities. This chapter introduces a psycho-socio-educational framework aimed at addressing the critical gaps in support for disabled migrants and refugees. Central to the framework is the provision of culturally competent, trauma-informed mental healthcare. By integrating tailored therapeutic interventions, such as trauma-focused therapies and accessible mental health services, the framework aims to alleviate the psychological distress experienced by disabled migrants. For example, culturally sensitive counseling and psychoeducation empower immigrant parents raising children with disabilities, helping them navigate language barriers, economic strain, and societal stigma. The framework also addresses the social dimensions of marginalization and economic exploitation, advocating for equitable access to labor markets and social welfare benefits. Legal and policy reforms, coupled with targeted advocacy and community engagement, are vital to dismantling systemic barriers and creating inclusive environments that support full participation of disabled migrants and refugees. Educationally, the framework promotes inclusive education by advocating for policy changes, enhancing teacher training, and fostering community involvement. It underscores the necessity of integrating medical education to meet specific healthcare needs and raising disability awareness among healthcare providers. These efforts aim to ensure that disabled migrant children receive equitable educational opportunities and comprehensive support. All in all, this framework is intended to serve as a blueprint for policymakers, educators, healthcare providers, and community organizations, guiding them in creating supportive, inclusive environments for disabled migrants and refugees. By implementing the strategies outlined, stakeholders can collaboratively enhance mental health, social inclusion, and educational outcomes, thereby promoting resilience and empowerment within this vulnerable population.

Shepherd, Z. (2023). Inclusive and equitable education in postcolonial Caribbean. In M. H. Rioux, J. Viera, A. Buettgen, & E. Zubrow (Eds.), Handbook of disability: Critical thought and social change in a globalizing world [Springer Nature Reference: Living Ed.]. Singapore: Springer. DOI: https://doi.org/10.1007/978-981-16-1278-7_46-1. 

In a society riddled with the long-term economic effects of colonialism, access to inclusive and equitable education directly impacts that society’s ability to innovate and actively participate in the rapid unfolding of our globalized futures. The present-day Caribbean education model perpetuates systemic segregation which continues to place barriers on societal growth. As a region, the Caribbean has been in a period of rapid transformation for a while, where entire industries are changing, identity is in constant flux, and the role people play in the productivity of world affairs is increasingly questionable. Considering the many vulnerabilities that the region faces, Caribbean nations need to actively participate in creating a new kind of future for themselves.

Opportunity lies in the untapped potential of the creative economy, and thus the possibilities of redesigning education to better equip the youth to engage creative thinking in their lives is necessary. Centered in Barbados, this study aims to bridge the gap between the need for creativity in the economy and the lack of teaching adequate creative thinking methods in the school curriculum, by introducing a flexible way for teachers to explore implementing creative thinking methods in classrooms across a variety of subjects. The design of accessible and practical tools allows the shifting of critical consciousness of both teachers and students alike, to co-create more inclusive and robust local communities.

Shrodes, A. & Paré, D. (2022). Advancing equitable education with intersectional approaches in queer theory [Rapid Community Report Series]. Digital Promise and the International Society of the Learning Sciences. 

“Intersectional queer theory is an orienting frame assembling traditions of thought that consider gender and sexuality at the intersection of other identities and structures. We consider intersectional queer theory through scholarship on queer of color critique, queer Indigenous and Two-Spirit theorizing, and queer disability studies. Using these frames, educators and researchers can design and study learning environments that affirm learners across marginalized identities and examine how interlocking power structures (re)produce dominant and subordinate relations.”

Simpson, H. A. (2021). Forming strong cultural identities in an intersecting space of Indigeneity and autism in Canada, the United States, Australia, and New Zealand. AlterNative: An International Journal of Indigenous Peoples, 17(3), 416–424. DOI: https://doi.org/10.1177/11771801211039274. 

Through its hegemonic ideologies, colonialism and its constituent underpinnings of religious and racial superiority, necessitates the erasure of the cultural identity of people outside the dominant Euro-Western culture and as non-normative groups, Indigenous Peoples and autistic people disabled per colonized paradigms, experience oppression, and subjugation harmful to self-identity and mental health. This article discusses culturally responsive interventions aimed at supporting strong cultural identity formation and safeguard Indigenous and autistic people from stigmatization, misrepresentation, and erasure of identity. Promising research uses Indigenous knowledges in education and arts programming to disrupt patterns of social injustice, exclusion, and cultural genocide while promote positive identity formation, pride, and resilience for Indigenous autistics. While Indigenous and autistic people exist globally, this article reviews literature from Canada, the United States, Australia, and New Zealand.

Simpson, H. A. (Stswecem’c Xget’tem First Nation, Secwépemc). (2023). Forming strong cultural identities in an intersecting space of Indigeneity and autism using participatory action research and digital storytelling. AlterNative: An International Journal of Indigenous Peoples, 19(4), 862-872. DOI: https://doi.org/10.1177/11771801231197838.

This research responds to the urgency to disrupt patterns of social injustice, exclusion, and cultural genocide while promoting positive identity formation, pride, and resilience for Indigenous autistics in the post-secondary education system. This study utilized a participatory action research approach positioning participants as collaborators with the research team. Data collection involved qualitative data derived from the transcripts of online sessions, participant digital stories, and a summative survey. Thematic analysis was used to identify emergent themes of individual and a collective narrative. Findings are presented as an original concept of the author called Thrivival: The Fire Within, comprising four themes: self-identity, time, balance, and community. This work contributes to a broader understanding and expressions of Indigenization, decolonization, equity, diversity, and inclusion in post-secondary teaching, learning, and policy to better support the identity and success of Indigenous autistic students and arguably, all students who experience intersectional discrimination within post-secondary education systems.

Sipuka, O., & Ngubane, S. A. (2022). Rethinking power and the complexities between critical disability studies and decoloniality in higher education. In M. H. Rioux, J. Viera, A. Buettgen, & E. Zubrow (Eds.), Handbook of disability: Critical thought and social change in a globalizing world [Springer Nature Reference: Living Ed.]. Singapore: Springer. DOI: https://doi.org/10.1007/978-981-16-1278-7_19-1. 

This chapter explores the intersecting facets of people with disabilities and open distance learning. It examines how the increased decolonization of higher education (HE) and experiences for students with disabilities in a South Africa university can be positively and negatively affected. We relate the biggest issues to the institutional level strategic support, personnel preparation and understanding, policy reflection and planning, inclusive programs, and student engagement. Above all, how disability inclusion drive change is reflected through decolonized Student Walk system that has been conceptualized can play a pivotal role in the education of students with disabilities. It found structural discrimination; staff and students alike poorly understood social injustices, suggesting there are more obstacles than opportunities for further decolonization in HE. The chapter suggests that several contradictory institutional support programs need to be decolonized and integrated within inclusive teaching and student support.

Slopek, C. (2021). Aboriginal speculations: Queer rhetoric, disability, and interspecies conviviality in The Interrogation of Ashala Wolf. In B. Burger, D. Kern, & L. Mattila (Eds.), Gender and Sexuality in Australian Speculative Fiction [Feature Issue]. Gender Forum, 81, 9-29.

The Anthropocene looms large in the 21st century, and queer and disabled people continue to be exposed to harassment and discrimination. What do these issues have in common, though? In Ambelin Kwaymullina’s speculative fiction novel The Interrogation of Ashala Wolf (2012), queer discourse collaborates with, promotes, and diversifies a non-anthropocentric world order, simultaneously implicating a dis/ability dialectic. This article brings together queer, disability, interspecies studies and literary analysis to explore how Kwaymullina’s young adult novel creates links between queerness and interspecies relations and how disability comes into play. The rhetoric used against children with so-called special abilities in the novel, who come to occupy the structural position of the queer in Kwaymullina’s narrative at the expense of those living with disabilities, as well as the role interspecies conviviality plays for future community construction are focal points of the article. For the latter part, in particular, this article draws on Aboriginal knowledge systems to explore how The Interrogation of Ashala Wolf weaves these marginalised epistemologies into literature and thus changes the field of speculative fiction.

Soldatic, K., & Fitts, M. (2021). The pedagogics of disability–Indigenous intersectionalities in the age of austerity. In B. Offord, C. Fleay, L. Hartley, Y. G.Woldeyes, & D. Chan, (Eds.), Activating cultural and social change: The pedagogies of human rights (pp. 60-74). London: Routledge. DOI: https://doi.org/10.4324/9781003042488-5.

“In this chapter, we explore the important pedagogic opportunities afforded through interrogating the role of disability rights in the lives of Indigenous peoples subjected to settler-colonial regimes of power. It is well established and documented within the United Nations that Indigenous peoples within settler-colonial regimes experience some of the highest rates of disability and chronic illness (UNDESA 2019). Yet, there has been limited pedagogic consideration of the possible importance of disability rights in promoting, protecting and securing the rights of Indigenous peoples and communities in the settler-colonial context. Core questions, such as what does disability teach us about settler-colonial relationships of racialised power, what role does disability and disablement play in Indigenous dispossession in settler-colonial regimes, and how does the state denial of disability social and economic rights further Indigenous people’s oppression, are critical if we are to fully identify, challenge and disrupt the uneven production and distribution of disability currently experienced by Indigenous peoples. In this chapter, we explore these very questions through examining the central role of disability and its pedagogic relations of power in the material realisation of social and economic rights in the lives of Indigenous carers who also live with their own disability. As we illustrate in this chapter, through a critical engagement with disability rights, we are presented rich and nuanced pedagogical moments and opportunities, to support Indigenous peoples claims for rights and recognition within settler-colonial contexts, alongside challenging settler-colonial racialised structures of ableism with the onset of austerity as policy orthodoxy” (p. 60).

Soldatic, K., & Gilroy, J. (2018). Intersecting Indigeneity, Colonisation and Disability [Special Issue]. Disability and the Global South, 5(2). 

“This special issue sought to open a space for critical debates and reflections on the issues and challenges of bringing together Indigeneity and disability as an intersecting identity. The overall aim was to question and challenge existing approaches to modern Western understandings of disability, how it is regulated, governed and experienced once the cultural identity of being Indigenous is positioned at the fore” (p. 1338). 

This special issue includes an editorial and the following articles: 

Springgay, S. (2021). Stitching language: Sounding voice in the art practice of Vanessa Dion Fletcher. In E. Chandler, K. Aubrecht, K., E. Ignagni, & C. Rice (Eds.), Cripistemologies of Disability Arts and Culture: Reflections on the Cripping the Arts Symposium [Special Issue]. Studies in Social Justice, 15(2). DOI: https://doi.org/10.26522/ssj.v15i2.2431.

This paper engages with the artistic practice and work of Vanessa Dion Fletcher (Potawatomi and Lenapé) from my perspective as a non-Indigenous academic and curator. Dion Fletcher and I have worked together over the past several years through discussions about her work, studio visits, and various events. In her art practice, Dion Fletcher uses porcupine quills and menstrual blood to inquire into a range of issues and concepts including Indigenous language revitalization, feminist Indigenous corporeality, Land as pedagogy, decolonization, and neurodiversity. In particular her work confronts the ways that Indigeneity, the queer and gendered body, and disability are rendered expendable. In this paper I engage with Dylan Robinson’s “sovereign sense”: a transcorporeal mode of perception that is affective, land-based, and formed through relations between human and non-humans. Dion Fletcher’s work makes palpable this sense of sovereignty through its unruly and mutating feltness. Further, her work makes visible feminist Indigenous artistic acts of resurgence alongside the frictions at the intersections of settler colonialism and disability. Following Karyn Recollet, I contend that Dion Fletcher’s work activates an Indigenous affective experience of futurity and creative intimacy that in turn imagines disability and Indigeneity as sites through which new pedagogical relations can be formed.

Taleyratne, J. (2021, August 3). First Nations women, disabilities, and family violence: An intersectional approach. One Woman Project Blog. Queensland, Australia.G

“Indigenous women with disabilities are identified as having experienced domestic violence at a much greater rate than the rest of the population (Cripps, Miller and Saxton-Barney, 2010). According to Aboriginal Justice Council (1999), 69% of assault cases against First Nations women are carried out by their spouse or partner. Compounding this issue, is that Indigenous women with disabilities experience additional barriers to the disclosure and seeking of help. While the statistics highlight a higher rate of Indigenous women with disabilities as victims of abuse, little is known about their experiences of violence and their access to services (Cripps, Miller and Saxton-Barney, 2010). This article will examine that although current policies are attempting to integrate and improve family violence (FV) services in Victoria, there is a lack of services that help to navigate the challenges Indigenous women with disabilities may face as victims of family violence. It will analyse the current family violence services, the impacts of discrimination through a critical disability lens, and the nuanced relationship between disability and gender-based violence.” 

Titchkosky, T., & De Welles, M. (2020). University managed minds: The colonial reproduction of students as mental health problems. Journal of Disability Studies in Education, 1(1-2), 35-63. https://doi.org/10.1163/25888803-bja10003.

This paper, informed by disability studies and de-colonial theory, examines the appearance of the counselling paradigm in the University of Toronto administrative archive. We begin from the assumption that an administrative treatment of the general student body as potentially disordered is a disabling orientation which makes student difficulties into individual problems to be managed through a mental health orientation. We show how this form of human resource management through the mental health regime is essentially tied to the “coloniality of power” as theorized by Mignolo. Such an analysis allows us to uncover the colonial machine from which the Modern University sprung as it remains hidden in place. We theorize how these mental health programs developed through the coloniality of our past are very much part of our present making the student body always potentially disabled and thus an administrative task to be governed while perpetuating Eurocentric ways of knowing, governing, and being.

Varas-Díaz, N., & Nevárez Araújo, D. (2024). Dis/abling narratives of indigenous bodies through decolonial metal music in Latin America. In J. H. Shadrack & K. Kahn-Harris  (Eds.), Heavy metal and disability: Crips, crowds, and cacophonies (pp. 140-161). Intellect Ltd. DOI: https://doi.org/10.1386/9781789389456_12.

Walsh, C., Puszka, S., Markham, F., Barney, J., Yap, M., & Dreise, T. (2023). Supporting Indigenous people with disability in contact with the justice system: A systematic scoping review. Disability & Society. DOI: https://doi.org/10.1080/09687599.2023.2215395.

The relationship between race, disability and criminality is complex and poorly understood. Scant information, and lack of action, exists on how to best keep Indigenous people with disability out of the justice system, and support this cohort while in the system. This systematic scoping review collates grey and peer-reviewed literature in Australia, Aotearoa (New Zealand), the United States and Canada, to gain insight into the current practices in place for justice-involved Indigenous people with disability, and list promising principles which may inform future practice. We identified 1,301 sources, and 19 of these met the inclusion criteria. Across these sources, nine key principles emerged: need for Indigenous designed, led and owned approaches; appropriately identify and respond to disability/needs; appropriate court models; appropriate diversionary options; therapeutic, trauma-informed, strengths-based and agency-building responses; facilitate connection to family, community and support networks; break down communication barriers; protect human rights; and provide post-release support.

Yellowhorse (Diné Nation), S. (2022). Disability and Indigenous resistance: Mapping value politics during the time of COVID-19. AlterNative: An International Journal of Indigenous Peoples,18(4), 605–612. DOI: https://doi.org/10.1177/11771801221123328. 

This article is about value politics and Indigenous resistance in the time of COVID-19. The effects of the pandemic on our global community have fuelled rhetoric of productivity—advancing collective lamentations of losing our normal lives within wider socio-political dialogue. This article examines how global responses to the COVID-19 pandemic amplified the visibility of settler-colonial histories in union with capitalist discourses to form value politics that impact Indigenous and disabled communities. Mapping wider social dialogue through time, I focus on current economy-based solutions in the call to return to a social normal at the risk of disabled communities. Such global responses are premised on capitalist logics of productivity and ableism which continue to disproportionately impact marginalised communities. By mapping rubrics of value within two settler nation states—the United States and Aotearoa New Zealand—I offer another rubric of value predicated on Diné (Navajo) practices of relationship and resistance.

Zaborskis, M. (2024). Queer childhoods: Institutional futures of indigeneity, race, and disability [Sexual Cultures]. New York: NYU Press.

Tracing the US’s investment in disciplining minoritarian sexualities since the late nineteenth century, Mary Zaborskis focuses on a ubiquitous but understudied figure: the queer child. Queer Childhoods examines the lived and literary experiences of children who attended reform schools, schools for the blind, African American industrial schools, and Native American boarding schools. In mapping the institutional terrain of queer childhoods in educational settings of the late nineteenth- and twentieth-century, the book offers an original archive of children’s sexual and embodied experiences.

Zaborskis argues that these boarding schools—designed to segregate racialized, criminalized, and disabled children from mainstream culture—produced new forms of childhood. These childhoods have secured American futures in which institutionalized children (and the adults they become) have not been considered full-fledged citizens or participants. By locating this queerness in state archives and institutions, Queer Childhoods exposes a queer social history entangled with genocide, eugenics, and racialized violence.

Ziarkowska, J. (2022). Cherishing the impaired land: Traditional knowledge and the Anthropocene in the poetry of Gwen Westerman. In M. Premoli & D. Carlson (Eds.), Indigeneity and the Anthropocene II [Special Issue]. Transmotion, 8(1). DOI: https://doi.org/10.22024/UniKent/03/tm.1007.

In the article I propose to read the work of Sisseton Wahpeton Oyate poet Gwen Westerman from the perspective of environmental humanities and disability studies. Following the insights of Heather Davis and Zoe Todd, I would like to indigenize the field by emphasizing the importance of traditional Indigenous knowledge in the responses to the effects of the Anthropocene. In Westerman’s poetry, the Anthropocene and the accompanying destruction of the environment begin with settler colonialism, which has more serious consequences than the ecological crisis: the loss of traditional lifestyles, foodways, and languages. If Westerman’s speakers believe in Indigenous survival, it can be found in the preservation of traditions and attention to/care for the land that is polluted, altered, and in pain. The emphasis on the need to return the land to the state of balance stands in sharp contrast with the way the discourse of capitalism describes the polluted environment as overexploited, useless, and “impaired.” As Sunaura Taylor has eloquently argued in her presentation “Disabled Ecologies: Living with Impaired Landscapes”, such a use of the “impaired” modifier demonstrates the extent to which Western preoccupation with and privileging of ableism – able bodies which are productive under capitalism – has penetrated thinking about damaged environments. Again, in Westerman’s work, “impairment” is an invitation to  a relationship with the land and its human, non-human, and inanimate beings. The condition of environmental change and pollution necessitates a new understanding of this relationship rather than its abandonment due to the capitalist logic of profit accumulation.

OIPO Disability Abstracts: Inclusive Museums, Libraries, Archives, and Other Cultural Spaces

This literature review contains relevant material across several disciplines taking into account inclusion with cultural spaces such as museums, libraries, and archives. Included are books, articles, and other resources on topics such as:

  • The perspectives of disabled archivists, curators, librarians, and cultural conveners
  • The disabled body as archive
  • Accessibility and usability of cultural spaces as well as access to culture
  • Labeling, terminology, and disability in tagging and subject categories in libraries, archives, and museums
  • Finding disability (or not) within archives, libraries, and museums, including historical records, databases, and other systems
  • Intersectionality within disability cultural spaces
  • Documentation and preservation of disability culture, art, and history
  • Include sensitive subjects such as institutionalization, trauma, eugenics, and/or genocide within cultural spaces
  • The relationship of cultural inclusion to disciplines such as history, digital humanities, information science, art education, and more

Updated 9/1/2024

Content Warning: Some materials may concern controversial subject matters; therefore, discretion is advised.

Adams, E. (2023). Teaching visual/material culture and museums in terms of disability access. In D. Libatique & F. McHardy (Eds.), Diversity and the study of antiquity in higher education: Perspectives from North America and Europe (pp. 100-109). New York: Routledge: DOI: https://doi.org/10.4324/9781003278016-9.

This chapter focuses on the British context, where the Disability Discrimination Act (DDA) of 1995 obliged all public bodies, including museums, to make their services accessible to disabled people. This is relevant to other countries as well (for example, the 1990 Americans with Disability Act), and the United Nations Convention on the Rights of Persons with Disabilities (CRPD) stands as a global statement on disability rights. The DDA includes duties for universities to adapt to students with disabilities. While this is best done on a case-by-case basis, the obligation is anticipatory, meaning that teachers should expect to cater for students with disabilities, rather than waiting to be notified and then responding appropriately. This has led to thinking about inclusive teaching, whereby the accessibility is present throughout the learning environment and may have benefits for all students. The process of making materials accessible involves thinking in depth about how we communicate and ways of learning. There is also the issue of representation. Given the tendency in HE disability services to assume that only students are likely to be disabled, pressure is placed on staff with invisible disabilities to mask them. There is therefore a lack of disabled role models in the sector, along with a tendency to view students solely as receivers of accessible content, rather than training them in the need to produce it as well.

Adler, M., Huber, J. T., & Nix, T. A. (2017, April). Stigmatizing disability: Library classifications and the marking and marginalization of books about people with disabilities. The Library Quarterly, 87(2), 117–135. DOI: https://doi.org/10.1086/690734.

Libraries have historically organized materials about people with disabilities according to conventions created by medical and social scientific communities, thereby reproducing dominant, often pathologizing and marginalizing discourses about disabilities. This paper focuses on libraries’ treatment of subjects related to physical disabilities by analyzing the National Library of Medicine’s Medical Subject Headings, Library of Congress Subject Headings, the Library of Congress Classification, and the Dewey Decimal Classification. We use the lens of stigma as first theorized by Erving Goffman to reveal some of the processes and practices by which materials are relegated to the margins on the shelves and in the catalog.

Ashmore, B., Grogg, J. E., & Rosen, H. (2020). An accessibility survey of libraries: Results, best practices, and next steps. The Serials Librarian, 78(1-4), 214-218. DOI: https://doi.org/10.1080/0361526X.2020.1703496.

Ensuring the accessibility of digital content is a priority for libraries. Digital collections continue to grow, and libraries seek feedback from users and use tools to diagnose and solve accessibility issues. As libraries grapple with this new landscape, they want to know where they stand amongst their peers, what mandates apply to their situations, and how library staff are being trained to address accessibility requirements, among other issues. In 2019, the LYRASIS consortium surveyed its large network of more than 1,000 member galleries, libraries, archives, and museums to discover how these member institutions are approaching accessibility. This paper represents highlights from that survey as well as examples of accessibility efforts from North Carolina State University Libraries.

Baumgartner, C. F. (2019). Bodies of knowledge: Politics of archive, disability, and fandom. In B. Liang & C. Duchastel de Montrouge (Eds.), Disability and/in/through Fanfiction [Special Issue]. Canadian Journal of Disability Studies, 8(2), 221–246. DOI: https://doi.org/10.15353/cjds.v8i2.499.

The work of critical theory cannot stop when it leaves the classroom, but must encompass the lived experience of the everyday. This essay combines personal narrative, disability theory, and a discussion of archiving strategies to question the boundaries of disability, injury and impairment.

Although fandom has an interesting and constructive relationship with disability, injury, and impairment, this paper does not focus on individual fan-works that feature these topics. This essay is instead an examination of the macro-structure of two different archives: TV Tropes and Archive of Our Own.

TV Tropes is an informal encyclopedia of narrative devices that uses community engagement to read narratives in a critical yet accessible way. Employing the macro-structure organization of the database, users frame the linkage of pity and disability in an atypical manner that subverts mainstream ableist assertions. This shows us that the structure of the archive allows for opportunities to resist oppressive ideologies. Rather than subverting official archival methods, Archive of Our Own instead provides space for users to create intersectional spaces through personally generated tags. While these websites are examples of how diverse archival strategies can positively engage with disability narratives, the decision to separate the labels of disability and injury is indicative of tensions around the categorization of the body. Examining how the division can be broken in both theory and fandom creates new, productive models of activism.

Bavi, A., & Gupta, N. (2022, December). Gamification of digital heritage as an approach to improving museum and art gallery engagement for blind and partially sighted visitors. Archaeologies, 18(3), 585–622. DOI: https://doi.org/10.1007/s11759-022-09461-2.

Digitization of heritage in art gallery and museum contexts raises ethical concerns around ownership, consent, and use. It also highlights fundamental issues of access and engagement for blind and partially sighted (BPS) visitors, especially elders. Gamification, which refers to the use of game elements and game design techniques, such as user feedback and additive levels of progress in non-game contexts, has been used to improve heritage pedagogy, accessibility for and engagement with museum and art gallery visitors. This paper examines collaborative efforts in digital heritage that engage with BPS visitors from historically excluded communities, thereby addressing their traditional exclusion from experiential learning in museum and art gallery settings. In this ethical framework, we use 3D printed models to demonstrate how gamification can play an essential role in providing BPS visitors in museum and art galleries an incentive to engage with the digital and physical archives, guiding them in experiential learning, and enabling new insights into their heritage. Fulsome implementation of 3D models as gamified objects can improve viewership, sharing, learning, and open discussion on redress for BPS members of historically excluded groups when it comes to their heritage. Gamification of digital heritage can enable a more diverse group of visitors to fully participate in the museum and art gallery experience.

Brilmyer, G. (2018). Archival assemblages: Applying disability studies’ political/relational model to archival description. Archival Science, 18, 95-118. DOI: https://doi.org/10.1007/s10502-018-9287-6.

This paper critically explores power structures embedded in archival description and re-conceptualizes archives and archival material as assemblages of politicized decisions specifically by utilizing Alison Kafer’s political/relational model of disability as a framework. Kafer’s model draws upon previous models of disability to open up contestation and politicization of disability as a category. This approach acknowledges that concepts of disability always already intersect with notions of race, class, age, gender, and sexuality. This article argues that cross-informing archival studies and feminist disability studies illuminates the long history that records creation and description processes have in documenting, surveilling, and controlling disabled and other non-normative bodies and minds. Furthermore, a political/relational approach makes possible the illumination of archival assemblages: the multiple perspectives, power structures, and cultural influences—all of which are temporally, spatially, and materially contingent—that inform the creation and archival handling of records. Through close readings of multiple records’ descriptions, both inside and outside of disability, this paper focuses on the complexity of language and its politics within disability communities. A political/relational approach first promotes moving away from the replication and reliance on self-evident properties of a record and second advocates for addressing—not redressing—contestable terms, both of which illuminate the archival assemblages which produced it. By embracing the contestation of disability, and therefore the corresponding ways in which it is represented in archives, archivists and archives users are able to perceive and challenge the ways in which norms and deviance are understood, perpetuated, and constructed in public narratives via archives. Existing at the intersection of disability studies, feminist discourse, and archival studies, this paper builds theory around archival description and radicalizes traditional approaches to understanding normativized constructs within archives as it encourages reflexivity and shifts power relations.

Brilmyer, G. (2020, Fall). Towards sickness: Developing a critical disability archival methodology. In J. Waggoner & A. Mog (Eds.), Visionary Politics and Methods in Feminist Disability Studies [Special Issue]. Journal of Feminist Scholarship, 17, 26-45. DOI: https://doi.org/10.23860/jfs.2020.17.03.

Although archival records on disability—such as medical, institutional, and freak show records—can facilitate in telling one side of disability history, these records often omit the voices of disabled people. Considering the abundance of such documentation as well as how sick and disabled people may be difficult to locate in historical records, this article trains a critical lens on archival absences and partialities. By foregrounding the experiences of sick and disabled writers, activists, artists, and scholars alongside critical disability studies, this article conceptualizes “sickness” to develop a critical disability archival methodology. By illuminating the various ways in which sickness and disability can be unknowable and fluctuating, this article addresses the multiple, often illegible, layers of absences, subtleties, inaccuracies, and perspectives that are embodied in records, archives, and the lack thereof. A critical disability archival methodology underscores not only the multiple systems—social, institutional, colonial etc.—that have produced records about disabled people, but also the granular ways in which such values and absences are also created and embodied within archives and their processes. This methodology therefore provides a framework for both archivists and archival users to work in solidarity with sick and disabled communities in addressing archival representation.

Brilmyer, G. (2022, Fall/Winter). “They weren’t necessarily designed with lived experiences of disability in mind”: The affect of archival in/accessibility and “emotionally expensive” spatial un/belonging. In J. Douglas, M. Ballin, J. Lapp, & S. Ahmadbeigi (Eds.), Toward Person-Centred Archival Theory and Praxis [Special Issue]. Archivaria, 94, 120-153.

Using semi-structured interviews with disabled archival users and building on the emerging field of critical access studies, this article illustrates the ways in which archival spaces and their in/accessibility affectively impact disabled people. Interviewees describe how they experience barriers to accessibility not only at a basic, architectural level – of not being able to get into a building or archives room – but also through archives’ policies and expectations regarding the ways in which archival work is done. The way that accessibility is implemented, even beyond legal compliance, greatly impacts the extent to which disabled researchers feel they belong in archival spaces. Inaccessibility, this research shows, produces a sense of unbelonging; the deprioritization of disability both as a subject or organizing category and as an identity of a potential researcher, shows disabled people that they do not belong in archival spaces, and this is further complicated for multiply marginalized disabled people. By examining the multifaceted ways that disabled people experience inaccessibility, this article focuses on the “emotionally expensive” aspects of inaccessibility to emphasize the ways in which barriers compound and accumulate and can prevent disabled people from accessing our own histories. These findings demonstrate how central accessibility is to disabled people’s lives: it is almost impossible to talk about our experiences of archival materials and history without discussing how we navigate the multiple barriers to accessing them.

Brilmyer, G.M. (2022). “I’m also prepared to not find me. It’s great when I do, but it doesn’t hurt if I don’t”: Crip time and anticipatory erasure for disabled archival users. Archival Science, 22(2), 167–188. DOI: https://doi.org/10.1007/s10502-021-09372-1.

Using data collected through semi-structured interviews with disabled archival users, this article foregrounds disabled people’s relationships with time, specifically to pasts and representations thereof in archival material. It illustrates the ways in which disabled people use their knowledge of how disability is understood—in archives and in society—to anticipate their erasure in archival material. First, focusing on the past, this data illustrates the prevalence of disability stereotypes, tropes, and limited perspectives within the records that document disabled people. Second, in witnessing such representations (or lack thereof), disabled researchers described how they are affectively impacted in the present moment: witnessing the violence of the past is emotionally difficult for many disabled people researching their histories. Third, using past experiences of archival erasure, interviewees described coming to expect and anticipate future absences—anticipation as an affective mode helped them prepare to encounter forms of erasure, to protect themselves against possible harms, and to hope for something different, all of which reflects their experiences of how disability is understood in society. This data reflect the way anticipation is a central facet of crip time—the multiple ways that disabled people experience time, pace, and temporal moments—to show how disabled people feel through multiple temporal landscapes and approach historical and archival representation.

Brilmyer, G. M. (2022). Toward a crip provenance: Centering disability in archives through its absence. Journal of Contemporary Archival Studies, 9, Art. 3.

Using the records that document the 1893 World’s Columbian Exposition as a case study, this article discusses the messiness and unknowability of provenance. Drawing attention to how the concept of provenance can emphasize the reconstruction of a fonds when records have been moved, rearranged, and dispersed, this article draws attention to the ‘curative’ and ‘rehabilitative’ orientations of established notions of provenance. Put in conversation with disability studies scholarship, which critiques rehabilitating, curing, and restoring, this article outlines the theoretical scaffolding of a crip provenance: a disability-centered framework of resisting the desire to restore and instead meets records where they are at. By acknowledging archival realities (where provenance is messy, partial, rumored, or nonexistent), this article emphasizes relationships that exist precisely because records are always already dispersed, duplicated, and partial. A crip provenance highlights four central facets of archival and crip relationships—people, systems, materials, and spaces—as a way to grapple with archival realities and tell disability history when there is little or no evidence of disabled people. Together these facets demonstrate how a crip provenance opens up multiple avenues for addressing disability in history: from highlighting moments of living disabled people experiencing archival material to expansive tangential histories that connect language and materials to politics and ableism within the colonial history of the Exposition.

Brophy, S., & Hladki, J. (2014). Cripping the museum: Disability, pedagogy, and video art. Journal of Literary & Cultural Disability Studies, 8(3), 315-333. DOI: https://doi.org/10.3828/jlcds.2014.25.

In November 2010, there was a conference on “Health, Embodiment, and Visual Culture” at McMaster University and an exhibition called “Scrapes: Unruly Embodiments in Video Art” at the McMaster Museum of Art. This article pursues the idea and implications of “scrapes” and “to scrape”: as a framework of disturbance and rupture; for knowing differently from a crip perspective; and for cripping museological praxis. Engaging closely with the visual and aural poetics, and critical activist rhetorics of the video works, the argument is that their unruly embodiments generate a mutually informing unsettlement of ableist, heteronormative, and neocolonial relations. The article also reflects critically on the potential to crip the museum when the exhibition’s video art archive rubs up against the regulatory mechanisms and the neoliberal model of diversity in the un-cripped university.

Broughton, J. (2023). That all may read: National Library Service for the Blind and Print Disabled. Public Services Quarterly, 19(1), 77-81. DOI:  https://doi.org/10.1080/15228959.2022.2152153.

This article details the services the US Library of Congress’ National Library Service for the Blind and Print Disabled provides and the ongoing efforts it makes to modernize and keep pace with technological changes in the delivery of information services to people with temporary or permanent low vision, blindness, or a physical or reading disability that prevents them from using regular print materials.

Brunskill, A. (2021). Disability studies research literature: It’s (mostly) not where we think. portal: Libraries and the Academy, 21(1), 81-97. DOI: http://doi.org/10.1353/pla.2021.0006.

There are currently no databases dedicated to indexing the research literature for disability studies. To identify which databases have more robust indexing of the literature of this field, the author compiled a list of relevant journals and searched for them in databases either frequently recommended in libraries’ disability studies research guides or indicated by Ulrich’s data to index a high number of the journals. Notable disconnects were found between frequently recommended databases and those with substantial indexing of disability studies journals. Challenges for research in this field were also encountered and documented, including inadequate indexing, particularly for open access journals.

Cachia, A. (Ed.). (2022). Curating access: Disability art activism and creative accommodation. New York: Routledge. DOI: https://doi.org/10.4324/9781003171935.

This book is an interdisciplinary collection of twenty-four essays which critically examine contemporary exhibitions and artistic practices that focus on conceptual and creative aspects of access. Oftentimes exhibitions tack on access once the artwork has already been executed and ready to be installed in the museum or gallery. But what if the artists were to ponder access as an integral and critical part of their artwork? Can access be creative and experimental? And furthermore, can the curator also fold access into their practice, while working collaboratively with artists, considering it as a theoretical and practical generative force that seeks to make an exhibition more engaging for a wider diversity of audiences? This volume includes essays by a growing number of artists, curators, and scholars who ponder these ideas of ad-hoc, experimental and underground approaches within exhibition-making and artistic practices. It considers how, through these nascent exhibition models and art practices, enhanced experiences of access in the museum can be a shared responsibility amongst museum workers, curators, and artists, in tandem with the public, so that access becomes a zone of intellectual and creative “accommodation,” rather than strictly a discourse on policy. The book provides innovative case studies which provide a template for how access might be implemented by individuals, artists, curators, museum administrators and educators given the growing need to offer as many modalities of access as possible within cultural institutions. This book shows that anyone can be a curator of access and demonstrates how to approach access in a way that goes beyond protocol and policy. It will thus be of interest to students and scholars engaged in the study of museums, art history and visual culture, disability, culture, and communication.

Cartwright, R. L. (2020). Out of sorts: A queer crip in the archive. In N. A. Swaby, C. Frank, & Y. Gunaratnam (Eds.), Archives [Special Issue]. Feminist Review, 125(1), 62-69. DOI: https://doi.org/10.1177/0141778920911936.

“Since the archive and other ‘built spaces’ of disability studies have potential to become sites of ‘renewed struggle’ for the field (Burch and Patterson, 2013, p. 132), it is vital for archive stories to be woven with crip knowledge” (p. 125).

Castelli Rodriguez, L. (2020). Memories from the body-archive among people with disabilities. Nómadas, 52, 183-197. DOI: https://doi.org/10.30578/nomadas.n52a11.

The article invites us to think about the past time of people with disabilities by merging categories like body and memory. It presents the body as a sensitive archive that produces multiple horizons of the past and by the making of public memories, it challenges the established point of view about this population. Some of the conclusions are that there is a link between social memory and corporal normalization, that what is socially bearable in the stories of people with disabilities is linked to their social position, and that it is necessary to disarm the obvious.

Ciaccheri, M. C. (2022). Museum accessibility by design: A systemic approach to organizational change. New York: Rowman & Littlefield Publishers / American Alliance Of Museums

What does museum accessibility mean today? How can it generate impact in museums and in society itself? Where should we begin to take concrete action?

Museum Accessibility by Design: A Systemic Approach to Organizational Change guides readers through the process of designing a museum accessibility strategy. Real world examples, tools, and resources foster implementation.

This book offers a comprehensive exploration of museum accessibility, with

  • an up-to-date and critical survey of the discipline;
  • a detailed, step-by-step guide on how to set up a rigorous and effective process that promotes accessibility throughout the museum institution;
  • tools and suggestions for rethinking accessibility and usability for a diverse range of museum visitors;
  • international case studies and best practices; and
  • a full accessibility training course with activities and exercises aimed at fostering an accessible mindset within any institution.

An engaging and accessible resource for university students, museum professionals and researchers, this book speaks to museum professionals of all types, from those just starting out to seasoned experts looking for a comprehensive, multi-faceted look at museum accessibility.

Clark, J. L., & Lischer-Katz, Z. (2023). (In)accessibility and the technocratic library: Addressing institutional failures in library adoption of emerging technologies. In G. Brilmyer & C. Lee (Eds.), This Feature Has Been Disabled: Critical Intersections of Disability and Information Studies [Special Issue]. First Monday, 28(1&2). DOI: https://doi.org/10.5210/fm.v28i1.12928.

Since 2015, there has been a rapid increase in academic libraries focusing their services on artificial intelligence (AI), immersive technologies (XR), big data, and other technologies that align their interests with corporations in the tech industry. However, there are broad ethical failures within this industry that libraries are not equipped to manage and instead risk importing those failures and discriminatory thinking into library services and technologies. This paper draws on the authors’ research on XR accessibility in academic libraries to illustrate how broader trends in technocratic thinking in academia are producing socio-technical configurations that often exclude disabled library users. It argues that critical failures in designing and implementing accessibility programs for emerging technologies in academic libraries point to the broader technocratic imperatives of contemporary universities operating under the logics of neoliberalism. Accessibility is an afterthought in this context, forcing users to adjust their bodies and senses to conform to the master plans of technology designers and evangelists.

Crawford, L. (2022). Emancipatory archival methods: Exploring the historical geographies of disability. Area Early Review. DOI: https://doi.org/10.1111/area.12844.

This paper focuses on the use of emancipatory research principles in archival research and contends with the suitability of academic conventions that characterise ethical practice when the research goal is to elevate the voices of marginalised historical groups. Drawing on a case study of Le Court Cheshire Home, England (1948–1975) to address a critical gap in the literature, I highlight some ethical dilemmas I encountered when working at the nexus of historical geography and geographies of disability. This paper demonstrates what an emancipatory research approach means for an archival study of disability, using examples to illustrate how ethical decisions impacted all stages of the research design and the write-up of findings. I argue that ethics should not be envisaged solely as an approval process completed at the project’s outset. Rather, the explorative nature of archival research necessitates that ethics should be an iterative undertaking, with archival sources having the potential to shape both the content and conduct of the research.

Creed, C., Al-Kalbani, M., Theil, A., Sarcar, S., & Williams, I. (2023). Inclusive augmented and virtual reality: A research agenda. International Journal of Human–Computer Interaction. DOI: https://doi.org/10.1080/10447318.2023.2247614.

Augmented and virtual reality experiences present significant barriers for disabled people, making it challenging to fully engage with immersive platforms. Whilst researchers have started to explore potential solutions addressing these accessibility issues, we currently lack a comprehensive understanding of research areas requiring further investigation to support the development of inclusive AR/VR systems. To address current gaps in knowledge, we led a series of multidisciplinary sandpits with relevant stakeholders (i.e., academic researchers, industry specialists, people with lived experience of disability, assistive technologists, and representatives from disability organisations, charities, and special needs educational institutions) to collaboratively explore research challenges, opportunities, and solutions. Based on insights shared by participants, we present a research agenda identifying key areas where further work is required in relation to specific forms of disability (i.e., across the spectrum of physical, visual, cognitive, and hearing impairments), including wider considerations associated with the development of more accessible immersive platforms.

Davies, J.E. (2007). An overview of international research into the library and information needs of visually impaired people. Library Trends, 55(4), 785-795. DOI: http://doi.org/10.1353/lib.2007.0039.

The background to general user needs assessment, including its value in service design and development, and the range of applicable methodologies is discussed. The diverse nature of users is recognized and the inappropriateness of a “one size fits all” approach is emphasized, with particular reference to visually impaired people. The place of research in supporting an evidence-based approach to service design and development is noted. A contextual section identifies some of the drivers that underpin appropriate and adequate provision to visually impaired people. They include legislation, international conventions, and codes of practice. Key features of the research agenda are identified. Much of the recent research relating to user needs coalesces around the theme of information technology, particularly the Internet, and assistive technology; another component of the research agenda comprises investigation of the general needs of visually impaired people in achieving a fulfilling lifestyle that includes access to information and libraries. Selected examples of completed research work from different countries are described in terms of scope, methods, and outcomes. An assessment of the need for future research concludes the article.

Duff, W., Sporn, J., & Herron, E. (2019). Investigating the impact of the Living Archives on Eugenics in Western Canada. Archivaria 88, 122-161.

The Living Archives on Eugenics in Western Canada is an online resource for community engagement and historical awareness with a particular emphasis on empowering survivors of state-enforced sterilization. This article reports on a qualitative impact study that reflects on secondary literature and interviews with 14 project participants to assess the extent to which the Living Archives impacted its members (including scholars, students, community partners, and survivors) and fulfilled its own stated goals (knowledge mobilization, research, and disability activism). While some of these impacts initially appear limited, the article, using the lenses of community archives, social justice impact, ethic of care, and critical disability studies, explores how the Archives counters the symbolic annihilation attempted by eugenic discourses and programs by giving both voice and editorial autonomy to survivors of Alberta’s sterilization program. The Living Archives project also developed a strong network of academics, activists, community members, and survivors, who modelled ways in which archival pursuits can successfully draw on an ethics of care. This article suggests that the Living Archives project should serve as a model for other digital archival projects to emulate.

Eikelenboom, M., Roos, W., & De Vet, M. (2019). Listening with your eyes: An accessible museum for deaf and hard-of-hearing visitors. The International Journal of the Inclusive Museum, 12(3), 51-64. DOI: https://doi.org/10.18848/1835-2014/CGP/v12i03/51-64.

Accessibility is high on the agenda of Dutch museums, especially since the ratification of the UN Convention on the Rights of Persons with Disabilities. In this article, the Van Gogh Museum shares how accessibility has been tackled organization-wide. How does the integrated approach to accessibility throughout the organization work? As a case study, the museum presents the developments in the field of accessibility for deaf and hard-of-hearing visitors. This started with research carried out by Roos Wattel (Wat Telt!) about the needs of this particular target group. After this, action was taken toward the production of a multimedia guide in sign language. The museum shares research results and practical tips and tricks toward an inclusive museum sector.

Fortuna, J., Harrison, C., Eekhoff, A.,, Marthaler, C., Seromik, M., Ogren, S., & VanderMolen, J. (2023). Identifying barriers to accessibility for museum visitors who are blind and visually impaired. Visitor Studies. DOI: https://doi.org/10.1080/10645578.2023.2168421.

For people with visual impairment, environmental features create barriers to inclusion and participation in public places such as museums. This study gathered direct feedback on accessibility from people with visual impairment to inform a major renovation at the Grand Rapids Public Museum. This study used a participatory action research design. Data collection included a guided walk and semi-structured interviews. A descriptive numerical summary and qualitative thematic analysis were used to summarize the results. Twelve participants were assigned to three categories of visual impairment: low vision, legally blind, and totally blind. The primary barriers to accessibility included inaccessible signage, lack of multi-sensory information, and staff training. Suggestions for improving accessibility include adding assistive technology and increased staff involvement. Identifying barriers to accessibility requires involving people with visual impairment in the decision making process. Understanding the unique needs of people with visual impairment will promote inclusion and participation in museum settings.

Fortuna, J. K., Thomas, K., Asper, J., Matney, L., Chase, K., Ogren, S., & VanderMolen, J. (2023). A survey of universal design at museums: Current industry practice and perceptions. The Open Journal of Occupational Therapy, 11(1), 1-15. DOI: https://doi.org/10.15453/2168-6408.1994.

Museums are key educational and cultural resources in the community, yet many are not accessible to visitors with disabilities. Universal design promotes products and environments usable to the greatest extent possible by all people, regardless of ability. This study explores current industry practice and perceptions of accessibility and universal design in a small sample of American museums. Suggestions for how occupational therapists can help museums go above and beyond ADA guidelines are provided. An 17-item cross-sectional survey was used to collect data. Twenty-five museum associations assisted with recruitment. A descriptive numerical summary and qualitative analysis were used to summarize the results. Sixty respondents participated in the survey. Accommodations for visitors with visual impairment and physical barriers created by historical buildings were identified as both challenges and successes by the respondents. Confusion between ADA standards and universal design was evident in several responses. The most frequently reported accessibility rating was good. Staff training and community-based partnerships are important, but often overlooked practices for improving accessibility. Local agencies who serve people with disabilities are underused resources in the community. There is a potential role for occupational therapists to assist museums with staff training, recruiting people with disabilities, and establishing community partnerships. Additional research is warranted.

Garcia Carrizosa, H., Sheehy, K., Rix, J., Seale, J., & Hayhoe, S. (2020). Designing technologies for museums: Accessibility and participation issues. Journal of Enabling Technologies, 14(1), 31-39. DOI: https://doi.org/10.1108/JET-08-2019-0038.

Purpose: This paper aims to report the findings of a systematized literature review focusing on participatory research and accessibly in the context of assistive technologies, developed for use within museums by people with sensory impairments or a learning disability. The extent and nature of participatory research that occurs within the creation of technologies to facilitate accessible museum experiences is uncertain, and this is therefore a focus of this paper.

Design/methodology/approach: This paper is a systematized literature review and subsequent thematic analysis.

Findings: A screening of 294 research papers produced 8 papers for analysis in detail. A thematic analysis identified that the concept of accessibly has nuanced meanings, underpinned by social values; the attractiveness of a technology is important in supporting real-life usability; and that the conceptualization of participation should extend beyond the end users.

Social implications: The argument is made that increasing the participation of people with sensory impairments and learning disabilities in the research process will benefit the design of technologies that facilitate accessibility for these groups.

Originality/value: An original notion of participation has emerged from this review. It includes the participation and goals of disabled people but has expanded the concept to encompass museum personnel and indeed the physical and social spaces of the museums and heritage sites themselves. This constructs a broad of participation, with different aspects being reflected across the review’s research papers.

Gibson, A., Bowen, K., & Hanson, D. (2021, February 24). We need to talk about how we talk about disability: A critical quasi-systematic review. In the Library with the Lead Pipe.

This quasi-systematic review uses a critical disability framework to assess definitions of disability, use of critical disability approaches, and hierarchies of credibility in LIS research between 1978 and 2018. We present quantitative and qualitative findings about trends and gaps in the research, and discuss the importance of critical and justice-based frameworks for continued development of a liberatory LIS theory and practice.

In the Library with the Lead Pipe is an open access, open peer reviewed journal founded and run by a team of librarians working in various types of libraries.

Gissen, D. (Ed.). (2019, Summer). Disability and Preservation [Special Issue]. Future Anterior, 16(1).

“’Disability and Preservation’ brings together work by preservationists, curators, and historians who explore the history and future maintenance of cultural artifacts through histories, representations, and experiences of human impairment. As the authors in this issue demonstrate, disability permeates the built environment and histories of preservation in extensive and unexpected ways. One can easily recover it as a central aspect of the history of architecture and cities. Preservation and impairment extends to much more than just an interaction between disabled individuals and a preconceived idea of heritage or the problem of accessibility, as substantial as that problem is. Rather, in the pages that follow, we witness disability as a fundamental feature of the materials, construction, and imagery of the built environment, one that has the capacity both to disrupt the architectural past as well as to make us rethink how to represent that past. In other words, one of the aspects of many monuments’ authenticity is their deep relationship to disability— something often eliminated in the preservation of these sites. Furthermore, many disabled students of architecture, me included, have typically experienced the history of architecture through the lens of historic preservation practices. Therefore, the field of preservation has the capacity to either promote or inhibit the larger diversification of the field of architecture more generally.

The contributions in this issue not only revisit several key themes in preservationist discourse but also provide a deeper understanding of the ultimate role that impairment contributes to material history and its maintenance. Thus this issue includes a wide variety of essays—from early architecture preservation efforts designed around education initiatives for deaf children to contemporary curators bringing disability aesthetics into displays of historic artifacts. As these essays demonstrate, understanding disability and preservation together enables us to challenge many of our ideas about architecture history— its architects, builders, users, and beholders— and the aesthetics of history embedded in preservation practices” (p. iii)

This special issue features an introduction, a book review, and the following articles:

González-Herrera, A.I., Díaz-Herrera, A.B., Hernández-Dionis, P. et al. (2023). Educational and accessible museums and cultural spaces. Humanities and Social Sciences Communications, 10, Art. 67. DOI: https://doi.org/10.1057/s41599-023-01563-8.

Offering access to culture and education to all citizens is a challenge nowadays, inclusive and accessible spaces are increasingly necessary if we really want to offer equal opportunities to all people regardless of their condition, physical or health. This systematic review study aims to investigate the situation of accessibility in museums and other cultural spaces as alternative learning spaces. It analyzes the historical evolution of cultural spaces as learning spaces and analyzes the reality of these spaces in terms of their accessibility conditions. For this purpose, an exhaustive search of documents was carried out between 2015 and 2021, following the PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) statement, from the Web of Science (WOS), Scopus and Dialnet databases. After the analysis and application of selection criteria, a total of 17 documents were found that show the transformation of these cultural spaces, the improvement of their accessibility and adaptation to the new times. The need to offer cultural spaces for all is a challenge that must be consolidated as a social value.

Graham, H., Green, V., Headon, K., Ingham, N., Ledger, S., Minnion, A., Richards, R., & Tilley, L. (2020). The public and the relational: The collaborative practices of the Inclusive Archive of Learning Disability History. In S. Popple, A. Prescott, & D. H. Mutibwa (Eds.), Communities, archives and new collaborative practices [Connected Communities Series] (pp. 219–234). Bristol, UK: Bristol University Press. DOI: https://doi.org/10.2307/j.ctvx1hvvd.22.

This book’s title—Communities, Archives and New Collaborative Practices—raises the question of who or what is collaborating. The reading of the title most immediately available might be that the collaboration is between communities and those that work in archives. Yet we want to focus on another type of collaboration here, one that is equally crucial in developing new collaborative practices for archives. In a recent action research project to develop an Inclusive Archive of Learning Disability History, it became clear that in seeking to produce an archive we needed to conceive of collaboration not only in terms of people but also in terms of a collaboration between different political theories. In developing the Inclusive Archive, we recognised that we needed to seek a collaborative relationship between the political ideas derived from public political logics – public service, public sphere, ‘on behalf of the public’ and for posterity – and those that derive from relational and personal-centred politics. While there was constant debate in the team with some of us favouring one set of political logic and some the other, we realised that for an archive to be an archive, and for it to be an inclusive one, we needed to develop an approach to archival practice that held both the public and the relational political traditions in dialogue. Both political traditions have a history of being very effectively expressed in the learning disability self-advocacy movement as speaking up and being heard, and of arguing for services to start with the individual by being more ‘person-centered’ (Brownlee-Chapman et al. 2017). The task of our archive was to explore fruitful combinations and collaborations between the two political traditions.

Gross, K. M., & Keifer-Boyd, K. (2022). Pedagogical encounters with the Indigeneity & Disability Justice Art Exhibition. In A. Allen, C. Penketh, & A. Wexler (Eds.), Thematic Issue on Disability Justice: Decentering Colonial Knowledge, Centering Decolonial Epistemologies.  Research in Arts and Education, 2022(3), 48–57. DOI: https://doi.org/10.54916/rae.125085.

Curricular encounters with the work of artists invited to be part of an online and ongoing exhibition, Indigeneity & Disability Justice Art, for the 3rd International Conference on Disability Studies, Art, and Education is the focus of this essay. The authors introduce pedagogical art encounters with the art in the exhibition to engage teachers and learners in the complexity of multiple layers of personal experiences of disability situated within systemic colonialist structures that reinforce ableism and hierarchies of power.

Guffey, E. (2015). The Disabling Art Museum. Journal of Visual Culture, 14(1), 61-73. DOI: https://doi.org/10.1177/1470412914565965.

This article examines museums and their furnishing, arguing that benches, seats and the very notion of comfort have a disabling or enabling function. A little studied aspect of visuality in museums, furniture admits some visitors and not others. Using New York’s Museum of Modern Art as the basis for its critique, the author gives an impressionistic account of how furnishing and comfort shape the museum visitor’s experience, but also reflect broader conceptions of the museum’s role in society.

Hardesty, J., & Nolan, A. (2021, September). Mitigating bias in metadata: A use case using Homosaurus linked data. Information Technology and Libraries, 40(3). DOI: https://doi.org/10.6017/ital.v40i3.13053.

Controlled vocabularies used in cultural heritage organizations (galleries, libraries, archives, and museums) are a helpful way to standardize terminology but can also result in misrepresentation or exclusion of systemically marginalized groups. Library of Congress Subject Headings (LCSH) is one example of a widely used yet problematic controlled vocabulary for subject headings. In some cases, systemically marginalized groups are creating controlled vocabularies that better reflect their terminology. When a widely used vocabulary like LCSH and a controlled vocabulary from a marginalized community are both available as linked data, it is possible to incorporate the terminology from the marginalized community as an overlay or replacement for outdated or absent terms from more widely used vocabularies. This paper provides a use case for examining how the Homosaurus, an LGBTQ+ linked data controlled vocabulary, can provide an augmented and updated search experience to mitigate bias within a system that only uses LCSH for subject headings.

Hill, H. (2013, April). Disability and accessibility in the library and information science literature: A content analysis. Library & Information Science Research, 35(2), 137-142. DOI: https://doi.org/10.1016/j.lisr.2012.11.002.

The library profession is a strong and vocal proponent of increased information access for people with disabilities. With the discipline’s longstanding interest in the subject of services to people with disabilities, questions arise about how the profession perceives the phenomenon. How is library and information science (LIS), as a discipline, conceptualizing disability and accessibility? A content analysis of the LIS literature was conducted to examine this question. The literature provides a fertile ground for study as it reflects the profession’s approaches to, and perceptions of, a topic. This research identifies the major issues and trends in the research about accessibility and disability in the LIS literature throughout a 10-year period, 2000–2010. The strongest theme in the literature is accessibility as it relates to web, database, and software, while the prevailing disability of focus is visual disabilities. The overall environment emphasizes technology more than attitudinal aspects associated with disabilities. The research could benefit from increased direct participation of people with disabilities.

Hollich, S. (2020). What it means for a disabled librarian to “pass”: An autoethnographic exploration of inclusion, identity, and information work. In K. M. Thompson (Ed.), Engaging Disability: Social Science Perspectives on Information and Inclusion [Special Issue]. The International Journal of Information, Diversity, & Inclusion, 4(1), 94-107. DOI:  https://doi.org/10.33137/ijidi.v4i1.32440.

Through autoethnographic research and a deep dive into theoretical literature, this article explores the idea of hidden or invisible disability and its impact on information work. Much of the current work on disability in higher education is focused on issues involving serving students or library patrons with disabilities. A less explored area of research focuses on the experience of being a library worker with a disability and how that may affect the nature of information work and the provision of service. Moreover, the author explores the repercussions of performing information work with a hidden disability, and how the nature of hidden disability and the act of passing brings about its own ethical quandaries and challenges. The conclusion discusses practical applications for working with colleagues who may have hidden disabilities and provides questions for further exploration.

Hunt, A., & Connolly, D. (Ed.). (2023, Winter). Enabled Archaeology [Feature Issue]. The Archaeologist Issue 118. Reading, UK: Chartered Institute for Archaeologists (CIfA).

The seeds for this issue were sown at The Enabled Archaeology Foundation’s panel at the 2022 CIfA conference Enabled archaeology: Making field and museum archaeology more inclusive for disabled staff, volunteers and visitors. Several case studies of good accessible and inclusive practice from commercial units, community projects and universities were shared at the conference, stimulating a discussion on the need to identify and highlight the barriers disabled people still face when they want to participate in archaeological activities, and how organisations can address this by adopting the models of good practice that exist. Using the conference as a starting point, CIfA and The Enabled Archaeology Foundation have worked together to create what we hope is a stimulating issue for readers.

NOTE: Current issues available to members-only, but archived issues available online after one calendar year.

Hunt, J. (2020, Winter). Freaks and freakery in film and history. In Symposium: Medical Humanities and the Fantastic. SFRA Review, 50(1), 54-58.

My focus here is on representations of disability and freakery in the media and within history. My wider research is focused on the representation of disability and, within this paper, I will consider how museums can use the ongoing interest in stories of freaks and freakery to tackle stereotypes and stigmas surrounding disability for their audiences. Initially examining the wide range of disability stereotypes that exist within the media, I will move on to consider the history of freak shows and freakery, before ending by examining how museums can make use of this.

Hutchinson, R., & Eardley, A. F. (2023). ‘I felt I was right there with them’: The impact of sound-enriched audio description on experiencing and remembering artworks, for blind and sighted museum audiences. Museum Management and Curatorship. DOI: https://doi.org/10.1080/09647775.2023.2188482.

This study explored the impact of sound-enriched audio descriptions (AD) on the experience and memorability of a digitally presented photography exhibition. Forty blind and partially blind (BPB) and forty sighted participants were presented with eight photographs from the Museum of London’s archive. Four photos were presented with a standard audio descriptive guide (ADG) and four with a sound-enriched audio descriptive guide (EDG). Experience and memorability were assessed directly after the presentation, and approximately 4 weeks later. Results demonstrated that sighted people remembered more photos than BPB people did with ADG. However, when photos were presented with EDG, the BPB and sighted groups remembered equal number of photos and equal numbers of details. EDG was also enjoyed and preferred by both BPB and sighted participants. Findings suggest that EDGs could be used within mainstream museum offerings as inclusive audio interpretation, thus enhancing access and enjoyment for many visitors and facilitating shared experiences.

Hutson, J., & Hutson, P. (2023). Museums and the metaverse: Emerging technologies to promote inclusivity and engagement. In L. Župčán (Ed.), Application of modern trends in museums [Working Title]. London: IntechOpen. DOI: https://doi.org/10.5772/intechopen.110044.

Over the past two decades, museums have increasingly sought to build connections with the community and increase inclusivity of visitors. At the same time, emerging technologies, such as extended reality (XR) and virtual museums (VM) are increasingly adopted to engage with different generational expectations but also for the purposes of supporting inclusivity and neurodiverse populations. First such technologies were adopted to augment exhibitions in the physical museum space for edutainment. Since then, XR has expanded from room-size environments (CAVEs) and augmented exhibitions to the creation of entire virtual museums, such as The Museum of Pure Form and The Virtual Museum of Sculpture. Digital twins of museums are increasingly common, along with UNESCO World Heritage Sites. Such virtual experiences can be leveraged to prepare neurodiverse visitors prior to visiting a museum. This chapter will outline how existing approaches to social stories and sensory maps may be combined with XR experiences to support neurodiverse visitors and their families. While onsite, immersive technologies can be used both for engagement and to provide accommodations for greater inclusivity and diversity.

Hutson, J., & Hutson, P. (Eds.). (2024). Inclusive smart museums: Engaging neurodiverse audiences and enhancing cultural heritage. Cham: Palgrave Macmillan. DOI: https://doi.org/10.1007/978-3-031-43615-4.

This book delves into the significant and timely intersection of cultural heritage, neurodiversity, and smart museums, exploring how various immersive techniques can create more inclusive and engaging heritage experiences for neurodiverse audiences. By focusing on these three aspects, the book aims to contribute significantly to the fields of cultural heritage, neuro-inclusivity, and smart museums, offering practical solutions and examples for heritage professionals and researchers.

The book highlights the importance of preserving and enhancing cultural heritage by incorporating immersive technologies and inclusive practices that cater to the needs of neurodiverse audiences. It emphasizes the need for museums and heritage sites to be more inclusive and accessible for neurodivergent individuals, showcasing best practices and innovative techniques to engage this audience effectively.

Jennissen, T., Marshall, D., Trainor, C., & Robertson, B. (2023). Creating, archiving and exhibiting disability history: The oral histories of disability activists of the Carleton University Disability Research Group.In G. Brilmyer & C. Lee (Eds.), This Feature Has Been Disabled: Critical Intersections of Disability and Information Studies [Special Issue]. First Monday, 28(1). DOI: https://doi.org/10.5210/fm.v28i1.12909.

Building a disability archives that is accessible is an ongoing challenge. At Carleton University in Ottawa, Canada, this work began a decade ago with the formation of a modest collection of scholars interested in disability issues. The Carleton University Disability Research Group developed as a collective of scholars, graduate students, and non-governmental organisation workers from the fields of social work, engineering, history, library, and archives, including people with disabilities. Since 2013, it has worked to collect, archive, discuss and display histories of disability in Canada, using various media. This paper documents and analyzes the aspects of this work linked to information studies, from the role of archivists and librarians to the making of archives and exhibits with, for, and about people with disability. It presents innovative decisions, introduces unexpected benefits for all in the light of the project of a critical disability archival method and discusses the potential of universities as a site of practice. It takes its most recent project, the Oral histories of activists in the disability rights movement in Canada (1970–2020) as the main case.

Johnson, G. (2019). Affordable audio visual solutions for library displays. The Primary Source, 36(1), Article 1.  Jackson, MS: Society of Mississippi Archivists.

This paper examines relatively low cost means of incorporating audio visual elements into library, archive, historical society, and museum exhibits. It provides some ideas smaller institutions can use to create interactive exhibits similar to those found in larger, well-funded museums.

Johnson, M., & Forsythe, C. (2019). Disability and accessibility language in subject headings and social tags. Catalogue & Index, 197, 16–26.

Mackenzie Johnson and Carlie Forsythe’s article on disability and accessibility language in subject headings and social tagging stresses the importance of involving subject experts in the creation of subject headings, and of getting the headings right to allow effective information retrieval. The authors also assess the ‘third way’, of semi-structured, moderated social tagging systems, that lies between fully controlled vocabularies and free social tagging.

Kanari, C., & Souliotou, A. Z. (2021). The role of museum education in raising undergraduate pre-service teachers’ disability awareness: The case of an exhibition by disabled artists in Greece. Higher Education Studies, 11(2), 99-119. DOI: https://www.ccsenet.org/journal/index.php/hes/article/view/0/44952.

In the frame of the worldwide policies towards inclusion there is a need of changes, systematic strategies and actions at different levels and settings of the society including education and cultural organizations. Museums, culture and arts have a constantly increasing role towards a more cohesive and inclusive society in terms of educational, social and cultural impact and for diverse social groups that face various barriers in their full participation in social life. Furthermore, museums as nonformal learning environments and art activities can complement different levels of formal education and courses towards a better understanding of diversity. The aforementioned are of particular importance for disabled people as well as for teachers who work with disabled children and for the enrichment of student teachers’ training in issues of disability. The aim of the present study was to investigate issues of cultural representations and the reflections of undergraduate Primary Education teachers regarding disabled artists, arts, museum and education after a visit in a temporary art exhibition of disabled artists. The participants were 33 student teachers of a University Department in Greece who attended a Museum Education course and the data were obtained via questionnaires. The results revealed the value and the need for further learning opportunities in museums and other cultural environments as well as their potential contribution in combating stereotypes, enriching and broadening undergraduate Primary Education teachers’ perceptions regarding disability with implications in the fields of Museum Studies and Museum Education, Arts, Higher Education, Special and Inclusive Education.

Kelly, E., & Rice, C. (2020, January 16). Universities must open their archives and share their oppressive pasts. The Conversation [Website].

A brief overview of gaining access to the University of Guelph’s archives to develop a co-created, multimedia and multi-sensory exhibition at the Guelph Civic Museum called Into the Light: Eugenics and Education in Southern Ontario which explored the University’s history of teaching eugenics.

Kirkpatrick, B. (2018). Disability, cultural accessibility, and the radio archive. New Review of Film and Television Studies, 16(4), 473-480, DOI: https://doi.org/10.1080/17400309.2018.1524963.

“‘Archiving as activism’ is a beautifully paradoxical phrase: an archive is usually thought to be about preserving the past, while activism is about changing the future. But as a mission statement, ‘archiving as activism’ calls on us to find–or more accurately, produce–interfaces and conjunctions between historical preservation and forward-facing social change. It recasts the archival project as less of a material effort to collect stuff and more of a temporal effort to facilitate activist conversations across time” (p. 473).

Koford, A. (2014). How disability studies scholars interact with subject headings. Cataloging & Classification Quarterly, 52(4), 388–411. DOI: https://doi.org/10.1080/01639374.2014.891288.

Although several scholars of information organization have documented limitations in the way subject access standards represent marginalized topics, few have studied how users understand and address these limitations. This qualitative study investigates the information seeking behavior of nine scholars in the field of disability studies, focusing on how they interact with subject headings. The findings suggest that disability studies scholars often encounter and use non-preferred language when doing research and that they respond to this language in a variety of ways. The study also found that many participants prefer multidisciplinary search tools to subject-specific databases.

Kosmas, P., Galanakis, G., Constantinou, V., Drossis, G., Christofi, M., Klironomos, I., Zaphiris, P., Antona, M., & Stephanidis, C. (2020). Enhancing accessibility in cultural heritage environments: Considerations for social computing. Universal Access in the Information Society, 19, 471–482 DOI: https://doi.org/10.1007/s10209-019-00651-4.

Current technological advancements offer many ways of enhancing disabled peoples’ access to cultural heritage environments. A new generation of social computing technologies and systems is changing the way in which we access cultural heritage, facilitating the inclusion of socially isolated groups of people. Under this perspective, this paper aims to explore the potential impact of social computing systems to enhance peoples’ access to cultural heritage, particularly focusing on deaf and disabled users. By reviewing the current literature on social computing and cultural heritage, the paper first summarizes the related applications and appropriate key technologies; second, it provides examples of innovative approaches to the enhancement of user engagement and interaction through social computing. Moreover, the paper highlights arising issues of privacy, as well as ethical considerations, and presents design principles for ensuring privacy. The study concludes by discussing challenges for inclusive social computing applications in the context of cultural heritage and pointing out areas where future research is needed.

Kumbier, A. (2014). Haunting archives: Memory, disability, and archival spaces in Liebe Perla. In Ephemeral material: Queering the archive [Series on Gender and Sexuality in Information Studies No. 5] (pp. 75-118). Sacramento: Litwin Books.

“This chapter explores queer archival concerns and practices with an unexpected tour guide: a documentary about the experiences of short statured people during and after the Holocaust” (p. 75).

Lambe, A. M. (2022, September). Seeing madness in the archives. The American Historical Review, 127(3), 1381–1391. DOI: https://doi.org/10.1093/ahr/rhac293.

What does it mean for the historian to be silent about mental illness in her life and also to perceive silence about mental illness in the archives? This essay explores the significance of the historian seeing mental illness and ableism in the historical archive, in her family history, and in herself. It examines the significance of mad identity for the historian, her historical subjects, and the discipline of history more broadly. It celebrates breaking the silence ableism inflicts and asserting madness.

Leahy, A. (2022). Barriers and facilitators to cultural participation by people with disabilities: A narrative literature review. Scandinavian Journal of Disability Research, 24(1), 68-81. DOI: https://doi.org/10.16993/sjdr.863.

Article 30 of the UN Convention on the rights of Persons with Disabilities obliges States Parties to ensure accessibility of cultural goods, services and heritage and to adopt measures enabling persons with disabilities to utilize their artistic potential. However, people with disabilities experience barriers to engagement in cultural life as audiences and as creators. This article presents a narrative literature review that classifies barriers and facilitators to cultural participation identified in previous studies. It does so under five headings: (1) lack of effective/adequate legislation, policies and legal standards; (2) lack of funding and/or of adequate services; (3) negative attitudes; (4) lack of accessibility; (5) lack of consultation with, and involvement of, persons with disabilities in cultural organisations. This provides a novel contribution to the state of art by synthesising findings from different yet related fields. It forms the basis for future multi-method research addressing barriers to participation in culture.

Leahy, A., & Ferri, D. (2022). The right to participate in cultural life of persons with disabilities in Europe: Where is the paradigm shift? Alter, 16(4), 5-29.

The UN Convention on the Rights of Persons with Disabilities (CRPD) is associated with a paradigm shift in how disability is approached, as it views persons with disabilities as holders of rights and as active members of society. It aims to ensure that people with disabilities are fully included in communal life, and, in Article 30, addresses participation in culture. This research article focuses on the implementation of Article 30, investigating whether there is evidence of the paradigm shift underpinning the CRPD in how cultural participation is approached by States Parties. Focusing on Europe and on the basis of a systematic qualitative document analysis of States’ reports to the Committee on the Rights of Persons with Disabilities and recommendations made by the Committee in response to them, this article shows that the medical model of disability still underpins cultural participation. Signs of a paradigm shift are, however, evident in the way States address accessibility and identities of some groups. Physical access to buildings and heritage is a prominent issue, and awareness of the need to facilitate access to cultural content is emerging. This article concludes that full realisation of the paradigm shift in the cultural domain, while being essential to achieve full inclusion of persons with disabilities, is yet to come.

Leahy, A., & Ferri, D. (2023). Barriers to cultural participation by people with disabilities in Europe: A study across 28 countries. Disability & Society. DOI: https://doi.org/10.1080/09687599.2023.2222898.

This article discusses the findings of a new qualitative study conducted in 28 European countries, examining barriers to cultural participation as perceived by representatives of organisations of people with disabilities. The study explores barriers operating in all art-forms as well as in cultural heritage, and it encompasses participation of people with a broad range of disability types both as audiences and as creators of culture. The article evidences that a range of interlinked barriers are commonly perceived by people with disabilities in five areas – lack of effective laws and policies; inadequate services and/or funding; negative attitudes; lack of accessibility; and lack of involvement of persons with disabilities in cultural organisations. The article argues for more systematic approaches to enforcement of laws and policies, for greater knowledge about disability to be embedded within cultural organisations and policymaking, and for employment of people with disabilities at all levels within cultural sectors.

Lee, J. W. (2024). The future of online barrier-free open space cultural experiences for people with disabilities in the post-COVID-19 era. In Y. Chen, T. Wang, Y. Xu, & Y. Liu (Eds.), Impacts of the COVID-19 Pandemic on Urban Planning, Design, and Management [Special Issue]. Land, 13(1), 33. DOI: https://doi.org/10.3390/land13010033.

This study examines the current state of barrier-free online content in Korea and proposes strategies to revitalize online cultural experiences for individuals with disabilities. By scrutinizing existing content and conducting interviews with relevant stakeholders, the study identified prevailing challenges and potential avenues for improvement. This research suggests the following directions. First, content creation should involve soliciting input from individuals with disabilities, with an emphasis on generating experiences that reflect the daily lives of those without disabilities. Additionally, the development of diverse and convergent content, such as for educational and therapeutic functions, is crucial to cater to various user groups. The study underscores the importance of formatting content in consideration of the physical characteristics of individuals with disabilities. For sustained and efficient utilization, content must be created in a universally accessible format, accommodating users with and without disabilities. It is recommended to set various options within a single piece of content, fostering inclusivity across various disability types. Regarding content creation technology, it is crucial to utilize various methods, such as VR (virtual reality), drone filming, and virtual simulation.

Marconcini, S. (2022). Inclusive design strategies for museums: Targets and remarks for wider access to culture. Protection of Cultural Heritage, 14. DOI: https://doi.org/10.35784/odk.3046.

Museums are repositories of culture, knowledge, and values that everyone should be able to have access to. To this end, specific attention should be paid to the issue of disability when designing or operating such facilities. Despite an increased awareness, many designers still lack a full understanding of the complexity of people’s needs and the topic of inclusion. Through an excursus of the evolving concept of diversity and how design can provide an enabling or disabling built environment, this paper aims at setting the cognitive framework to address the issue of broader fruition in museum spaces. Particularly, the focus of this contribution is on the European context, its historical cities and cultural heritage. Therefore, the needs of inclusion must be balanced with those of conservation, adding an extra layer of complexity. The museum will then be examined from an inclusive perspective, highlighting the issues to be addressed and providing some suggestions on the tools available to overcome them and grant everyone access to culture.

Martin, D. (2023). Experimental modalities: Crip representation and access with Electronic Arts Intermix. Leonardo. DOI: https://doi.org/10.1162/leon_a_02490.

The author in collaboration with Electronic Arts Intermix (EAI), a non-profit video arts distributor and organization, partner to find ways in which videos in EAI’s collection may reflect upon themes of disability and/or engage modes of access like captioning and audio description. This research and the author’s own interest in conceptual and performance practices found in moving image works that have broadly been tethered to the word experimental, have been situated to engage with accessibility even for the works which resist and challenge the very nature of legibility. This essay acts as the authors first attempt to explore an archive to identify video artworks that represent disability (whether deliberately or not) and/or present alternative modes of access (whether deliberately or not) with the intent of laying a groundwork for curations that tap into possibilities within accessibility formats.

Martins, P. R. (2021). Redefining disability in museums: Exploring representation. The International Journal of the Inclusive Museum, 15(1), 21-31. DOI: https://doi.org/10.18848/1835-2014/CGP/v15i01/21-31.

The representation of social minorities has been the object of discussion, debate, and reflection relating to contemporary museological practices and thinking within museums regarding the content of exhibitions, participation, and collaboration with marginalized groups. However, people with disabilities continue to be underrepresented in most museum exhibitions and public programs, and they are seldom recognized as a social minority with their own culture and identity. When they are represented, they most often appear in an undignified context, irrespective of the current ideas of otherness and human diversity. What policies and practices can museums develop to change the cultural significance of disability and raise the awareness of their audiences regarding the issues of disability, presenting their legacies, trajectories, and history? How can the contents of these collections be explored and presented publicly through curatorial or educational practice? What impact can the representation of disability have on museum dynamics? With these questions, this article focuses on current issues regarding the practice of representing disability in museums in Portuguese collections, addressing and problematizing the way museums have publicly interpreted and presented disability through their collections and exhibitions.”

McMillen, R. (2017, August). Museum marketing and disability access. International Journal of Business Management and Commerce, 2(4).

This article examines museum marketing and disability access, specifically the variety of ways museums market their accessible programs to people with disabilities. Five prominent U.S. art museums were selected to investigate the marketing methods they use to promote access to audiences with disabilities. The results indicate that word of mouth and the use of technology, such as websites and social media, were the most common forms of marketing methods used to reach people with disabilities. These findings provide museums and the disability community with valuable insight about what accessible amenities, programs, and events museums are currently offering and the avenues by which museums market them.

Mesquita, S., Caldeira, A., & Carneiro, M. J. (2022). What facilitates or constrains co-creation in museums? The case of people with visual impairments. Disability & Society. DOI: https://doi.org/10.1080/09687599.2022.2157704.

The awareness that museums must be inclusive and participatory led to practices adapted to visitors’ requirements and co-creative experiences, encouraging interaction with exhibitions, and thus fostering memorable experiences. Yet, constraints remain for people with disabilities, reducing their satisfaction and desire to return. Despite the high number of people with visual impairments worldwide, there is a lack of research on factors that may impact their co-creation in museums. This paper aims to identify factors influencing the co-creation of people with visual impairments experiences in museums, either facilitating or constraining it. Based on focus groups discussion, the results of the study conducted suggest that the co-creation of people with visual impairments in museums is influenced both by aspects related to visitors, as well as by disabling features of the museums’ physical, communicational, and attitudinal environments. Conclusions and implications drawn are critical to improve the experience of people with visual impairments in museums.

Michalak, R., & Rysavy, M. D. T. (2020). Assessing the accessibility of library tools & services when you aren’t an accessibility expert: Part 2. Journal of Library Administration, 60(3), 295-300. DOI: https://doi.org/10.1080/01930826.2020.1727283.

There are a few studies in library literature that explore accessibility issues from the perspective of students who use assistive technologies for accessibility. As we shared in part one of this two-part series in our column, librarians have extensively explored through usability studies with WAVE and other audit tools how accessible library websites and databases are when using assistive technologies like JAWS. In this column, we asked our blind student worker to journal his experiences navigating our library’s databases. We found this student navigated the databases better than we anticipated. While his experiences regarding the accessibility of the libraries’ electronic services varied, common issues he experienced included navigational issues from menus with expanding capabilities, documents that were not scanned with OCR, and images without alternative text.

Mudawi-Rowlings, O. (2021, January 10). Harnessing Cultural Capital to achieve authentic inclusivity. London: Clore Leadership.

“The question I pose here is: how we can adapt current structures and policies to genuinely encompass the cultural capital of Deaf, neurodiverse and disabled people?

This essential work has been historically appointed to one generic access officer who is tasked with ensuring intersectionality and diverse representation. Cultural Capital delivers equality that is a value-added exchange. Marginalised people must not be seen as detracting from culture when efforts are made in mainstream settings to engage with them but rather the opposite. It is a two-way exchange that enriches all through a drive towards equality. The perspectives and input of marginalised people add enormous value to our sector and this influx of new ways of working and perceiving the world generate fresh initiatives but breathes creative life into our work that makes it not only attractive but sustainable. By facilitating cultural capital into economic capital, authentic inclusivity can be achieved.

In my interviews with access officers, artists, patrons and other integral community members at several high-profile arts organisations – including the British Museum, Tate Modern and the Royal Academy – it has been noted that there is a serious lack of Deaf or disabled representation within the workforce.

As a British Sudanese, female, Deaf artist and maker, I have observed events that have been unsuccessful in the ultimate aim of being accessible or attracting their intended audience, and I can identify missed opportunities that crudely equate to cost inefficiencies, never mind the significant human impacts.

These missed opportunities can be linked to simple issues that cultural knowledge and accumulated lived experiences can mitigate. Current structures assume one access officer is able to represent a diverse range of people. It is inevitable that a single staff member is not part of each diverse community they are trying to reach, and is therefore not aware of the places where listings need to be posted or how to reach audiences in the most appropriate and effective manner. These can be incredibly nuanced issues that are easy to miss, but which have significant and lasting impacts on attendance and trust in a brand, venue or organisation. It also devalues the people who it is intended to include.

Exhibiting venues have a legal obligation to ensure that their sites are accessible to disabled people and as such, Deaf patrons are offered access in the form of a BSL tour or through a sign language interpreter. Accessibility has improved enormously due to increased awareness, legislation and technology, but it is only one part of the discourse on inclusivity; a workshop for current or developing artists on a painting form and material style, for example, is rarely accessible. The distinction is in the assumption that the user of accessibility is a Deaf person who is a patron and not an artist.

For the rest of this paper, I will focus on the most underrepresented aspect of my own personal intersectionality, but by doing this, I do not intend to exclude the diverse intersections that are so often not factored into the process in meaningful ways. It also demonstrates the important point that one person cannot cover all of these complex features of identity alone. I will also include the perspectives of a wide range of interviewees, with the aim of providing a broader view of the complex set of concerns I am setting out to address.

Underrepresented people are broadly tired of being part of yet another advisory board, often repeatedly seeing misrepresentation or enduring underrepresentation in practice, while not being equitably recompensed for their valued contribution. Cultural capital is the manifestation of cultural assets that have economic worth. The intellectual assets of Deaf people are central to their enterprise, while the erosion of their capital can be destabilising. This is not unique to Deaf people and is just as prevalent in most underrepresented groups of people.”

Muir, R. (2020). It’s all in the plan: A document analysis of Victorian council and public library disability access and inclusion plans. Journal of the Australian Library and Information Association, 69(1), 102-155. DOI: https://doi.org/10.1080/24750158.2020.1712883.

The Victorian Government requires councils to create a disability action plan or discuss inclusion in their council plan. Disability action plans aim to reduce barriers in accessing goods, services or facilities and to reduce discrimination. With public libraries in Victoria being managed by councils either individually or in a corporation, these action plans have the potential to directly impact on the community via library services. Using qualitative and quantitative document analysis, a total of 31 Victorian councils or library corporation disability action plans were analysed to understand what these plans saw as the action areas for libraries working with people with a disability. It was found that definitions of disability in these action plans broadly matched with the wider disability and libraries literature, with most councils in Victoria having an online action plan but comparatively few library corporations having the same. Libraries were largely discussed in relation to six theme areas (Access; Certification; Collections; Programming; Technology; and Training). An overall summary indicates that libraries involvement in council disability action plans is less detailed than in some library corporation action plans.

Münch, L., Heuer, T., Schiering, I., Müller, S.V. (2022). Accessibility criteria for an inclusive museum for people with learning disabilities: A review. In M. Antona, & C. Stephanidis (Eds), Universal Access in Human-Computer Interaction. User and Context Diversity, HCII 2022 [Lecture Notes in Computer Science, Vol. 13309] (pp. 371-385). Springer, Cham. DOI: https://doi.org/10.1007/978-3-031-05039-8_27.

This review strives to collect, contrast, and systematize criteria for an inclusive museum for people with learning disabilities in guidelines and scientific publications. The aim is to provide an overview of relevant criteria and information for museums to improve access for people with learning disabilities. In addition, it will be examined to which extent persons with learning disabilities are involved in the development of guidelines or the research of accessibility requirements. A literature review was conducted to identify relevant accessibility criteria for people with learning disabilities. The review highlights that scientific publications focus on exhibits for the inclusion of people with learning disabilities, whereas guidelines propose general actions and measures. In particular, guidelines mention many access preferences for people with learning disabilities, whereas many of these criteria do not appear to be generally accepted yet, because some criteria are considered important by only one guideline. The small number of relevant guidelines and scientific publications identified in this review signifies that people with learning disabilities are only partly considered within the museum context so far. The importance of participatory research approaches is emphasized but commonly not yet been implemented. There is a need for further research that focuses on access preferences and the specific needs of people with learning disabilities in a participatory way. The development of guidelines should be accompanied by scientific studies, and research projects should pursue more participatory research approaches. Furthermore, the benefits of digital assistive technologies as mediation media should be examined in future works even more.

Nikolić, T., & Ranczakowska, A. M. (2023). Diversity, equality, accessibility and inclusion (DEAI), and mentorship in the cultural sector. In K. Kiitsak-Prikk & K.Kiiv (Eds.), Perspectives on mentorship: Reinventing mentoring in arts and creative industries management (pp. 143-158). Tallinn, Estonia: Estonian Academy of Music and Theatre Press.

Questions of diversity, equality, accessibility, and inclusion (DEAI) are topical in the context of mentorship and this chapter provides practical means and ways of introducing them. The chapter underlines existing social inequalities in the European cultural sector, explains the relevance of questions of diversity, equality, accessibility, and inclusion through mentoring and gives examples of mentoring programmes across and outside Europe aiming to support socially marginalised colleagues in the field of arts and arts management. The chapter also offers guidelines for future mentoring programmes in order to contribute to diversity and equality in their local scenes or artistic fields, as well as implications for educational institutions and platforms in the arts and culture.

Olmo, R. L. (2023). Access barriers to digital screens in museums. The International Journal of the Inclusive Museum, 16(2), 87-107. DOI: https://doi.org/10.18848/1835-2014/CGP/v16i02/87-107.

Museums are public spaces that must guarantee access to their content to as many people as possible. For this reason, museums must consider all the difficulties their visitors may encounter when accessing their galleries and the exhibitions within them. Many areas of study in the museum sector have been applying what is known as the social model of disability in their approach for some years, but professionals who work in the design of exhibitions are often excluded from this conversation. This may imply that the accessibility aspects applied to the design of exhibitions in museums are often the same applied by designers to other sectors, and they are usually based on the medical model of disability. By highlighting the nature of access barriers and how they are experienced by visitors, this research aims to help professionals involved in the design of exhibitions empathize with the problems that visitors can face accessing digital screens and, therefore, provide solutions to mitigate their effects.

Partarakis, N., Zabulis, X., Foukarakis, M., Moutsaki, M., Zidianakis, E., Patakos, A., Adami, I., Kaplanidi, D., Ringas, C., & Tasiopoulou, E. (2022). Supporting sign language narrations in the museum. In N. Partarakis, X. Zabulis, L. Pannese, A. Carré, C. Meghini, S. Manitsaris, A. Dubois (Eds.), Understanding and Representation of the Intangible and Tangible Dimensions of Traditional Crafts for Their Safeguarding and Valorization [Special Issue]. Heritage, 5(1), 1-20. DOI: https://doi.org/10.3390/heritage5010001.

The accessibility of Cultural Heritage content for the diverse user population visiting Cultural Heritage Institutions and accessing content online has not been thoroughly discussed. Considering the penetration of new digital media in such physical and virtual spaces, lack of accessibility may result in the exclusion of a large user population. To overcome such emerging barriers, this paper proposes a cost-effective methodology for the implementation of Virtual Humans, which are capable of narrating content in a universally accessible form and acting as virtual storytellers in the context of online and on-site CH experiences. The methodology is rooted in advances in motion capture technologies and Virtual Human implementation, animation, and multi-device rendering. This methodology is employed in the context of a museum installation at the Chios Mastic Museum where VHs are presenting the industrial process of mastic processing for chewing gum production.

Partington, Z., & Boys, J. (2022). Abandoned in the archives? Collaborating with disabled people towards more inclusive spaces. In E. Robenalt, D. Farrell-Banks, & K. Markham (Eds.), Activist Pedagogies in Museum Studies and Practice [Special Issue]. Journal of Museum Education, 47(4), 442-458. DOI: https://doi.org/10.1080/10598650.2022.2147357.

The DisOrdinary Architecture Project was co-founded in 2008 by Zoe Partington, a partially blind artist who has a chronic condition, and Jos Boys, to promote activity that develops and captures models of new practice for the built environment, led by the creativity and experiences of disabled and Deaf artists. Since then, through this platform, diverse disabled artists have been working with students, educators, museums, galleries, architectural professionals and other cultural practitioners to co-explore innovative and creative ways to think about improving access, equality and inclusion. In this article, framed as a conversation between the DisOrdinary’s two founders and co-directors, we link disability arts and activism to wider artistic and campaigning practices for inclusion. We explore what alternative kinds of museum and gallery spaces we need, and also their underpinning archival, curatorial and educational practices. How can we unlock the potential for change by ensuring excluded people are at the heart of decision-making? What are the barriers? What kinds of critical and provocative creativity can unlock disabled people’s stories and artifacts, as a vital part of our heritage and learning?

Perera, T. (2022). Description specialists and inclusive description work and/or initiatives—An exploratory study. Cataloging & Classification Quarterly, 60(5), 355-386. DOI: https://doi.org/10.1080/01639374.2022.2093301.

This paper presents preliminary findings from an exploratory research study investigating the education, Library and Information Science (LIS) work experiences, and demographics of description specialists engaging in inclusive description work and/or initiatives. Survey results represent participants’ education background, LIS work experiences, motivations behind projects and initiatives, areas of work and types of project priorities, preferred outcomes, and challenges encountered while engaging in inclusive description work and/or initiatives. Findings also point to gaps in understanding related to cultural concepts. A participant-created definition for inclusive description is a successful outcome of the study.

Pietroni, E., PaganoA., Biocca, L., & Frassineti, G. (2021). Accessibility, natural user interfaces and interactions in museums: The IntARSI Project. In A. Macchia, N. Masini, & F. Prestileo (Eds.), YOCOCU2020 Hands on Heritage: Experiencing, Conservation, Mastering Management [Special Issue]. Heritage, 4(2), 567-584. DOI: https://doi.org/10.3390/heritage4020034.

In a museum context, people have specific needs in terms of physical, cognitive, and social accessibility that cannot be ignored. Therefore, we need to find a way to make art and culture accessible to them through the aid of Universal Design principles, advanced technologies, and suitable interfaces and contents. Integration of such factors is a priority of the Museums General Direction of the Italian Ministry of Cultural Heritage, within the wider strategy of museum exploitation. In accordance with this issue, the IntARSI project, publicly funded, consists of a pre-evaluation and a report of technical specifications for a new concept of museology applied to the new Museum of Civilization in Rome (MuCIV). It relates to planning of multimedia, virtual, and mixed reality applications based on the concept of “augmented” and multisensory experience, innovative tangible user interfaces, and storytelling techniques. An inclusive approach is applied, taking into account the needs and attitudes of a wide audience with different ages, cultural interests, skills, and expectations, as well as cognitive and physical abilities.

Pionke, J. J. (2020, April). Disability- and accessibility-related library graduate-school education from the student perspective. Journal of Education for Library and Information Science, 61(2), 253-269. DOI: https://doi.org/10.3138/jelis.2019-0036.

This study explored library graduate student perceptions of their readiness for and comfort levels in doing activities related to accessibility and disability. The study also aimed to determine the training needs of library graduate students. A survey with both quantitative and qualitative questions was developed, snowball sampling was used, and the survey was administered in the fall of 2018. Analysis of both data types indicates that library graduate students generally feel unprepared to work with patrons with disabilities or address activities related to accessibility. Based on the results, there are several recommendations for improvement within library graduate education, including incorporating accessibility and disability more robustly into the current curriculum, creating training/education programs that teach practical skills, including how to troubleshoot assistive technologies, and recruiting and retaining students and faculty who have disabilities.

Pionke, J. J. (2020). Library Employee Views of Disability and Accessibility. Journal of Library Administration, 60(2), 120-145. DOI: https://doi.org/10.1080/01930826.2019.1704560.

This study sought to explore library employee attitudes toward people with disabilities and accessibility. It also aimed to determine the training needs of current library employees. A survey with both quantitative and qualitative questions was developed and snowball sampling was used. Analysis of both types of data indicates that librarians across library types generally feel unprepared to work with patrons with disabilities. Based on the results, there are several recommendations for improvement within the profession, including creating a more robust training program focused on accessibility and disability, examining policies from local through national levels, and improving recruitment and retention of people with disabilities into the profession

Pirrone, M., Centorrino, M., Galletta, A., Sicari, C., & Villari, M. (2023, April). Digital Humanities and disability: A systematic literature review of cultural accessibility for people with disability. Digital Scholarship in the Humanities, 38(1), 313-329. DOI: https://doi.org/10.1093/llc/fqac045.

In recent times, Digital Humanities (DH), together with the discoveries of Information and Communications Technology, have enabled the rediscovery and usability of cultural content with the support of various technologies. However, it was found that not everyone is able to access web platforms or visit cultural sites easily. In particular, the epidemiological Covid-19 crisis has highlighted the retrograde state of culture in terms of accessibility and usability, conditioned by the physical and web browsing limitations that for years weighed on people with disabilities. Therefore, it was decided to investigate how DH might support the cultural accessibility of people with disabilities. In particular, it was decided to carry out a systematic review of the cultural innovations of DH together with a survey on disability and supporting technologies in order to present how to improve the quality of the cultural experience of such a target. This study proceeded with the research and selection of literature on the subject of DH and disability, with the selection, analysis, and correlation of the scientific works included. The reference time frame includes the works produced between 2018 and 2022 consulted on main databases such as Scopus and Web of Science (WoS), screened using the Preferred Reporting Items for Systematic reviews and Meta-Analyses Statement.

Power, M. (2017). Disruptive curatorial practices: An intermediary force of activism. Knots: An Undergraduate Journal of Disability Studies, Issue 3, 118-125.

This paper examines the disruptive nature of disability-led curatorial practices with respect to curating disability art. The normative narrative of disability is subverted through the disruptive curatorial process of teaching, displaying and re-presenting disability art. This process is informed by the social model of disability. The exhibition, Medusa’s Mirror: Fears, Spells & Other Transfixed Positions, curated by Amanda Cachia at the Pro Arts Gallery in Oakland, California is used as an example of a disruptive curatorial practice that teaches, displays, and re-presents disability in an institutional space.

Re, M. R., & Valente, M. (2023). Promoting social inclusion in vocational training students with disabilities: An experience of museum education. In D. Guralnick, M. E. Auer, & A. Poce (Eds.), Innovative Approaches to Technology-Enhanced Learning for the Workplace and Higher Education: TLIC 2022 [Lecture Notes in Networks and Systems Vol. 581]. Springer, Cham. DOI: https://doi.org/10.1007/978-3-031-21569-8_29.

The present contribution aims to illustrate the results of a pilot experience conducted at the National Etruscan Museum of Villa Giulia with the participation of CFP Simonetta Tosi in Rome, a vocational training centre addressed to people with disabilities. The educational path, realized within the pilot experience, aims to promote well-being, analytical skills, and the use of digital technologies in museum education contexts, and it is addressed to adult users with problems of social inclusion. The achievement of the aims of the pilot experience is pursued using inclusive and innovative learning methodologies: Object-based Learning (OBL) and Digital Storytelling (DST). OBL is increasingly adopted in both formal and informal education contexts, especially in terms of well-being and transverse skills promotion. The focus on the museum object facilitates the involvement of users and supports communication, analysis, and argumentation skills. DST allows people to express, understand, and articulate everyday experiences in a creative way. Through DST, museum users can connect with the territory in which they have situated, identifying different types of stories and telling them through digital devices. Moreover, DST is not simply a vehicle for increasing digital literacy, but also a learning methodology aimed at overcoming social barriers and increasing understanding between generations, ethnicities, and displaced groups. The results of the pilot experience underline a good level of well-being at the end of the learning activities, an improvement of sense of community and digital and basic skills promotion within participants.

Regehr, C., Duff, W., Aton, H., & Sato, C.  (2022). Grief and trauma in the archives. Journal of Loss and Trauma: International Perspectives on Stress & Coping. DOI: https://doi.org/10.1080/15325024.2022.2164143.

Reporting on a qualitative study involving in-depth interviews, this paper seeks to elucidate the nature and factors associated with emotional responses in archivists working with records detailing human suffering and atrocity and working with individuals in the community whose lives intersect with the archives. Results detail the impact of these exposures on archivists; and factors influencing emotional responses to traumatic exposures such as the nature of exposure, personal history and connections to the traumatic material, professional engagement and expectations, and the organizational context. Recommendations for mitigating the emotional toll of archival work arising from the data are presented.

Roque Martins, P. (2021). Redefining disability in museums: Exploring representation. The International Journal of the Inclusive Museum, 15(1). 21-31. DOI: https://doi.org/10.18848/1835-2014/CGP/v15i01/21-31.

“The representation of social minorities has been the object of discussion, debate, and reflection relating to contemporary museological practices and thinking within museums regarding the content of exhibitions, participation, and collaboration with marginalized groups. However, people with disabilities continue to be underrepresented in most museum exhibitions and public programs, and they are seldom recognized as a social minority with their own culture and identity. When they are represented, they most often appear in an undignified context, irrespective of the current ideas of otherness and human diversity. What policies and practices can museums develop to change the cultural significance of disability and raise the awareness of their audiences regarding the issues of disability, presenting their legacies, trajectories, and history? How can the contents of these collections be explored and presented publicly through curatorial or educational practice? What impact can the representation of disability have on museum dynamics? With these questions, this article focuses on current issues regarding the practice of representing disability in museums in Portuguese collections, addressing and problematizing the way museums have publicly interpreted and presented disability through their collections and exhibitions.”

Rysavy, M. D. T., & Michalak, R. (2020). Assessing the accessibility of library tools & services when you aren’t an accessibility expert: Part 1. Journal of Library Administration, 60(1), 71-79. DOI: https://doi.org/10.1080/01930826.2019.1685273.

In 2019, the Goldey-Beacom College library served its first 100% blind student. To become more familiar with accessibility efforts at other colleges and universities, the authors compiled a brief literature review that discusses state statutes for accessibility, university policies on accessibility, and librarians’ audits on web accessibility and vendor supplied databases. To determine the accessibility of the library’s subscribed tools and services, the director of the office of institutional research & training and the director of the library, archives, and learning center used the WAVE online accessibility checker to audit the main library electronic resources: Gale Power Search, ProQuest, Yewno, EBSCO, LibGuides, SpringShare A–Z Database List, JSTOR, Adam Matthew, SAGE Research Methods, and Encyclopedia Britannica. WAVE results indicate that there are errors with 9 out of 10 electronic resources reviewed and alerts with 10 out of 10 of the audited electronic resources.

Sandell, R., Dodd, J., & Garland-Thomson, R. (Eds.). Re-presenting disability: Activism and agency in the museum. New York: Routledge. DOI: https://doi.org/10.4324/9780203521267.

“Re-Presenting Disability addresses issues surrounding disability representation in museums and galleries, a topic which is receiving much academic attention and is becoming an increasingly pressing issue for practitioners working in wide-ranging museums and related cultural organisations. This volume of provocative and timely contributions brings together twenty researchers, practitioners and academics from different disciplinary, institutional and cultural contexts to explore issues surrounding the cultural representation of disabled people and, more particularly, the inclusion (as well as the marked absence) of disability-related narratives in museum and gallery displays. The diverse perspectives featured in the book offer fresh ways of interrogating and understanding contemporary representational practices as well as illuminating existing, related debates concerning identity politics, social agency and organisational purposes and responsibilities, which have considerable currency within museums and museum studies.”

Schomberg, J. (2018). Disability at work: Libraries, built to exclude. In K. P. Nicholson & M. Seale (Eds.), The politics and theory of critical librarianship (pp. 111–123). Sacramento: Library Juice Press.

My goal in writing this chapter is to use critical disability theory grounded in my lived experience to offer some possibilities for improving the working conditions of library employees with disabilities. I begin by providing an overview of some mainstream and critical perspectives on disability. Next, I offer my own insights into being a disabled librarian by taking an intersectional approach to the construction of power. I conclude the chapter by suggesting some ways to bring theory and practice together to make the workplace more inclusive of people. Throughout the chapter, I share some of my experiences as a person with diabetes in an attempt to highlight how combining lived experience with social theories can improve the practice of library work.

Sherman, M. (2022). Accessibility in libraries: A landscape review. Chicago: Knology, in collaboration with the American Library Association (ALA) Public Programs Office and Office for Diversity, Literacy and Outreach Services.

“Since libraries are essential points of connection for communities around the country, it is important to consider how disability and accessibility factor into library settings—whether in library programming, services, or the physical aspects of library buildings themselves. This report, put together by Knology, presents a review of some of the literature and best practices around libraries and accessibility. In particular, it attends to the different ways in which disability has been and continues to be understood, the ways in which the term has evolved, and what this has meant for libraries attempting to become some of the most inclusive and accessible institutions in society. In the pages that follow, this report lays out an explanation of the different ways disability has been understood and defined over time, the history of accessibility in libraries, the landscape of accessibility and its different applications in library settings in the 21st Century, and the resources that are available and most commonly used to include people with different kinds of disabilities into library programs and services” (p. 4).

Sheidin, J., & Kuflik, T. (2023). Artful accessibility: Designing technologies to enhance museum experiences for individuals with mobility disabilities in art exhibitions. 2nd Italian Workshop on Artificial Intelligence for Cultural Heritage (IAI4CH 2023, co-located with the 22nd International Conference of the Italian Association for Artificial Intelligence (AIxIA 2023), 6-9 November 2023, Roma, Italy.

Accessibility gains importance and is becoming a central component on the agenda of cultural and heritage sites, such as museums, especially since the ratification of the UN Convention on the Rights of Persons with Disabilities. A range of innovative technologies are being designed to facilitate accessibility for museum visitors. These new technologies have the potential to trans-form museum experiences for people with mobility disabilities. The present-ed work is a work in progress, which demonstrates an innovative system that will enhance the visit experience for individuals with mobility disabilities in art exhibitions.

Shirai, Y., & DiCindio, C. M. (2022). Museum as a mutual learning space for artists with intellectual and developmental disabilities and university students. Canadian Journal of Disability Studies, 11(3), 30–60. Retrieved from https://cjds.uwaterloo.ca/index.php/cjds/article/view/926.

Using a university museum as a mutual learning space, guided by the core principles of multivocality and inclusive arts practice, six adult artists with intellectual disability and 16 undergraduate students collaborated to plan a public art exhibition. In this article, we describe the facilitation of the 6-week group process with artists with intellectual disability who have varied cognitive and communication abilities, to curate their own stories and prepare for a public art exhibition, and students to gain field experiences as community art educators, working with a community artist group. By using the expressive arts as a core communicative tool, artists with intellectual disability led small group conversations about a shared life topic of grief with university undergraduate students. In return, the students facilitated the curating process for the artists with intellectual disability, being able to transform their personal bereavement stories into a public exhibition. Evaluation of artefacts, observations and survey data demonstrated significant and positive influence on artists to synthesize their detailed stories in their works of art through creative and art-based group dialogues, and students’ skills to facilitate multivocality of practice. The results also confirmed that, with shared values of respecting diverse voices of people, creativity and reflectivity, multivocality and inclusive arts practice are compatible frameworks for setting up an inclusive community project.

Shogren, K. A., Caldarelli, A., Del Bianco, N., D’Angelo, I., & Giaconi, C. (2022). Co designing inclusive museum itineraries with people with disabilities: A case study from self-determination. Education Sciences & Society – Open Access, 13(2). DOI: https://doi.org/10.3280/ess2-2022oa14611.

In the present paper, after a description of the theoretical framework used to define self-determination, we will describe the importance of structuring a research context that fosters the self-advocacy of people with disabilities. In this direction, a protocol of participatory research with people with intellectual disabilities will be presented in the third paragraph. Specifically, we will expand the procedure to support the creation of accessible museum captions, thanks to the application of Easy-to-Read guidelines.

Society of American Archivists. (2019, February). Guidelines for accessible archives for people with disabilities. Chicago: Author.

These Guidelines provide recommendations and suggest resources to help archivists provide services and spaces that are accessible and inclusive. They encourage respect for each person’s right of physical control of their own body, assistive devices and related accommodations. They advise compliance with the ADA and other external accessibility standards, including at institutions that are not legally mandated to do so. Institutions are encouraged to conduct periodic comprehensive accessibility reviews touching on all areas of these Guidelines. Even if an institution does not have all the tools to accommodate every person’s differing abilities, working towards accessibility is key.

Soler Gallego, S. (2022). (Re)Imagining the museum: Communicative and social features of verbal description in art museums. Disability Studies Quarterly, 42(1).  DOI: https://doi.org/10.18061/dsq.v42i1.7287.

Verbal description plays a crucial role in improving access to modern-day art museums. This article presents the results of a study of verbal description in art museums in France, Spain, the United Kingdom, and the United States of America. These results are of two types: one, the communicative features of the verbal descriptions offered by museums and two, the social features of the context in which these verbal descriptions are created and implemented. Previous studies have partially described these aspects, but they mainly followed a quantitative approach or focused on the most frequent practices regarding specific linguistic devices. The goal of this article is to offer a qualitative analysis of these elements in a large sample and to provide a comparative analysis and critical discussion of both the majority and the minority practices in verbal description in art museums. The results show that art museums follow various approaches to foster the access for blind people to their collections. Some of these approaches open new ways of comprehending accessibility in art museums and especially, audio description. A critical and creative discussion of these findings and further collaboration within and across borders could revolutionize verbal description and visitors’ experience in art museums in the years to come.

Stuckey, A. (2021, Fall). Stories out of place: Archives of disability and settler colonialism in and from life of Black Hawk. In J. Larkin-Gilmore, E. Callow, & S. Burch (Eds.), Indigeneity & Disability: Kinship, Place, and Knowledge-Making [Special Issue]. Disability Studies Quarterly, 41(4). DOI: https://doi.org/10.18061/dsq.v41i4.

Near the beginning of his 1833 narrative, Sauk warrior Mà-ka-tai-me-she-kià-kiàk, or Black Hawk, interrupts himself. Stepping out of the account he is narrating—the account of his resistance to the white theft of Sauk lands that culminated in the Black Hawk War—he states, “My memory is not very good, since my late visit to the white people. I have still a buzzing in my ears, from the noise—and may give some parts of my story out of place; but I will endeavor to be correct.” This moment is one of several in Life of Black Hawk in which Black Hawk self-consciously disrupts his own story in order to comment on the larger circumstances of disruption that he recounts. The passage also records a moment of apparent impairment, or of fluctuation in Black Hawk’s storytelling capacity: the weakened memory, the “buzzing” in the ears, and the storytelling “out of place” seem to index the crowding and stress Black Hawk experienced as a prisoner of war held by the US government.

In this essay, I read this moment in Black Hawk’s narrative as one that illuminates the intertwined experiences of fluctuating narrative voice and settler colonialism, and one that reveals the entanglements of disability and settler colonial archives and archival methods. To do so, I first close-read this interruption to suggest that it registers a relationship between settler colonialism and impairment in Black Hawk’s life. Building off of critical work that situates Life of Black Hawk as a layered, collaborative text preserving and averring many voices and stories, I suggest that the text demonstrates an intersection of archival concerns and practices specific to settler colonialism and disability studies. I theorize this relationship through the appearance of Life in twentieth-century records of the Indian Claims Commission. Finally, I conclude with a reading of the Sac and Fox Nation’s current reception of Life as a sustained interruption of settler colonialism that foregrounds ongoing tribal networks of support.

Sullivan, C. (2021). Contextualizing disability: A century of Library of Congress subject headings. Emerging Library & Information Perspectives, 4(1), 8–33. DOI: https://doi.org/10.5206/elip.v4i1.13448.

The interconnection of language and societal context is demonstrated through the Library of Congress Subject Headings surrounding disability. This study examines and compares how language encapsulates contemporary understandings of disability in the second edition (1919) and eighth edition (1975). Created and published during the so-called “Progressive Era,” the second edition emphasizes Victorian beliefs in the correspondence of morality with participation in the labour force and genetic fitness (i.e., conformity to physical and psychological norms). The language of this context further marginalized persons with disabilities. In contrast, the eighth edition marks the growing respect for and autonomy of people with disabilities, with language related to the civil rights movement, medical advances, and the replacement of ableist terms such as “Deaf and dumb” with neutral terms or self-definitions, such as “Deaf.” This evolution demonstrates the positive effects when we as librarians accept our social responsibility to eschew marginalizing language and instead use language that affirms minority identities.

Tilley, E., Christian, P., Ledger, S., & Walmsley, J. (2021). Madhouse: Reclaiming the history of learning difficulties through acting and activism. In O. Braden & T. Cook (Eds.), Learning Difficulties: Histories and Cultures [Special Issue]. Journal of Literary & Cultural Disability Studies, 15(3), 347-363. DOI: https://doi.org/10.3828/jlcds.2021.27.

Until the very end of the twentieth century the history of learning difficulties was subsumed into other histories, of psychiatry, of special education and, indeed, of disability. Initiatives to enable people with learning difficulties and their families to record their own histories and contribute to the historical record are both recent and powerful. Much of this work has been led or supported by The Open University’s Social History of Learning Disability Research (SHLD) group and its commitment to developing “inclusive history.” The article tells the story of the Madhouse Project in which actors with learning difficulties, stimulated by the story of historian activist Mabel Cooper and supported by the SHLD group, learned about and then offered their own interpretations of that history, including its present-day resonances. Through a museum exhibition they curated, and through an immersive theatre performance, the actors used the history of institutions to alert a wider public to the abuses of the past, and the continuing marginalization and exclusion of people with learning difficulties. This is an outstanding example of history’s potential to stimulate activism.

Tumlin, Z. (2021, April 14). “A body of culture”: Disability culture in the home and archive. Folklife Magazine. Washington, DC: Smithsonian Center for Folklife and Cultural Heritage.

“Disability has been a part of my life for as long as I can remember, but not the Disability community and its culture. On my mother’s side, my late grandmother had polio, and there are at least four generations of neurodivergence, including me—an Autistic who sought out and received a medical diagnosis as an adult. Growing up, I observed that in my family, disability was rarely spoken about, poorly managed, and (most importantly for this article) viewed at the individual level. After my diagnosis, I had to decide if that is what I wanted for myself, and if I did not, what my alternatives were. In this article, I will examine my grandmother’s role in my disability journey, share some of my experiences as a disabled archivist, and propose an event to promote, cultivate, and preserve Disability culture.”

Vasilakou, P., Mineiko, S., Hasioti, T. M., Gavriilidou, Z., & Drigas, A. (2022). The accessibility of visually impaired people to museums and art through ICTs. Technium Social Sciences Journal, 35(1), 263–284. DOI: https://doi.org/10.47577/tssj.v35i1.7273.

Human’s involvement with culture is a vital part of his life, but what happens when someone is blind or visually impaired (VI) and how Information and Communication Technologies (ICTs) help the access to cultural locations? The difficulties and limitations that blind and visually impaired (BVI) persons face while visiting museums or art exhibitions are of high importance. These limitations concern both the access to the location and the perception of the exhibits. This bibliographic research is divided into four main parts. In the first part of our paper we will analyze the difficulties that these people face as visitors in art exhibitions and how their disabilities affect an autonomous visit. Afterwards, we will refer to the importance of the disability arts when combined with ICTs. In the next part, we will mention the projects that are already applied or those for which efforts have been made globally for their implementation. These will be accompanied by recorded feedback from blind and visually impaired visitors. Finally, we will make a scheduled visit to the Tactual Museum of Athens in order to collect material on practices used in their exhibition and we shall record reactions from visually impaired visitors.

Wang, Q. (2022). Democratizing the museum: Disability and the need for accessibility. In O. De Sanctis, J. Lundquist, S. Mohsin & Y. Jaksic (Eds.), Somatic Cartography & Stories: Mapping Meaning onto the Body [Feature Issue]. Pivot: A Journal of Interdisciplinary Studies and Thought, 9(1). DOI: https://doi.org/10.25071/2369-7326.40318.

Unbothered by disruption of body and mind, the abled body moves and acts freely without consequences. This abled body, within the vernaculars of visual culture, represents a dogmatic portrayal of naturalism that privileges itself as the normative representation of idealism. However, these sentiments affirm bias for the disabled body, as well as sensory and mental impairment, as undesirable. Historically, politically, and culturally marked by their differences, these polarities of disability and ability reveal the systematic ableism that is presented within the exhibition of museums and galleries. By examining the relationship between disability and museum studies, this paper looks at how exhibitions engage with disabilities in relation to ableism and the notions of the ideal citizen. Considering the historical, social, and political discourse of disability, this paper considers how exhibitions can confront the stigma of disability by analyzing the relationships between visual culture and disability, the universal survey museum, and its exclusion of the other. Through close examination of accessible galleries, such as Tangled Art + Disability Gallery, I argue that the democratization of museums through the inclusion of others creates inclusivity that reflects the new era of museum studies and the current construction of identity politics.

Ware, S. M., Zankowicz, K. & Sims, S. (2022). The Call for Disability Justice in Museum Education: Re-Framing Accessibility as Anti-Ableism [Special Issue]. Journal of Museum Education, 47(2).

“This issue of The Journal of Museum Education starts a conversation about how to move beyond accessibility toward anti-ableist museum education, and what such practices could look, sound, or feel like. It documents some of the work being done to establish a path forward for MadFootnote2 and disability justice in museums. The articles in this issue document, amplify, and center the practices, voices, and perspectives of Mad and disabled people doing this work, embodying the demand ‘nothing about us without us.’ A majority of our articles are written by or include an author who identifies as disabled” (p. 130).

Articles in this special issue include:

Watson, B. M., & Schaefer, B. (2023, January). Handicapped has been cancelled: The terminology and logics of disability in cultural heritage institutions. In G. Brilmyer & C. Lee (Eds.), This Feature Has Been Disabled: Critical Intersections of Disability and Information Studies [Special Issue]. First Monday, 28(1&2). DOI: https://doi.org/10.5210/fm.v28i1.12898.

This paper originated from a collaborative effort between an academic and archivist and a cataloger to address the issues around the LCSH heading “Social disabilities.” In it, we examine various aspects and consequences resulting from the ways that galleries, libraries, archives, museums, and special collections (GLAMS) organize knowledge about disability and disabled users. We do this primarily through the lens of documentary analysis of cataloging and classification systems as this process, elsewhere called “the power to name” (Olson, 2002), as it is the basis for the operation of GLAMS. First, we will provide an outline and contextual information about the Library of Congress Subject Headings (LCSH), the largest and most influential subject heading vocabulary system in the world. Next, we will examine the discourse around disability in library and information science via the results of a literature review. Next, we will examine the history, transformations, use, and meaning behind the LCSH heading “Social disabilities,” as an example of breakdown in terminology. Finally, and unique to the literature, we will propose an alternative hierarchy of terms for the Persons hierarchy in LCSH and discuss other methods that catalogers may use for organizing holdings about disability.

Weisen, M. (2008). How accessible are museums today? In H. Chatterjee (Ed.), Touch in museums: Policy and practice in object handling (pp. 243-252). London: Routledge. DOI: https://doi.org/10.4324/9781003135616-24.

Unfortunately disabled people are still frequently seen as a nuisance and an impediment to the ‘normal’ functioning of cultural organizations. Directors and managers would of course emphatically deny this, but. as the old proverb says, ‘the proof of the pudding lies in the eating’ and in our case, the pudding would show as barrier-free and inclusive services. This chapter looks at the wider European social and cultural policy context of making objects available for handling in museums to provide, at least, a measure of access to collections for visually impaired people. The experience of touch in museums is one of the ways of nurturing a greater diversity of human perception in an increasingly visual world. Access for disabled people can only be realized successfully if it becomes integral to everything a museum does. Museum and gallery visitors do likewise, as they explore works of art.

Wentz, B., Gorham, U., & Jaeger, P. T. (2023). Academic libraries and their legal obligation for content accessibility. In G. Brilmyer & C. Lee (Eds.), This Feature Has Been Disabled: Critical Intersections of Disability and Information Studies [Special Issue]. First Monday, 28(1&2). DOI: https://doi.org/10.5210/fm.v28i1.12892.

U.S. academic libraries exist in an unusual space, as they are both providers of access to computers, the Internet, and databases and electronic products, and producers of electronic content through digital repositories and electronic journals. They are part of larger organizations, yet the other parts of these larger organizations are not libraries or even library-related. In addition, there are factors — beyond merely decision-making processes — that make accessibility a far more fraught concern for academic libraries. U.S. academic libraries are also influenced by the policies of new media content creators that maximize their profits through streaming on their own platforms. Further, academic libraries have taken on new roles related to information access, including the collation and distribution of electronic materials through campus digital repositories of preprints, theses, and other works created by faculty, staff, and students. Moreover, in some cases, libraries have stepped into the role of publisher, particularly with respect to open-access electronic journals. For people with disabilities, accessibility in all of these facets is essential for their ability to be equal users of the library. These various roles of academic libraries create a distinct set of legal, technological, and ethical pressures related to ensuring accessibility for individuals with disabilities, which will be explored in this article, along with the potential for academic libraries to become leaders in accessibility in libraries and in broader society.

Wentz, B., Lazar, J., Jaeger, P. T., & Gorham, U. (2021). A socio-legal framework for improving the accessibility of research articles for people with disabilities. Journal of Business Technology Law, 16(2), 223-257.

Within the context of scholarly research articles, the concept of open access generally refers to content that is published online, free, and immediately available. There has been much recent discussion, research, and debate over open access to research, noting that the lack of open access can limit the availability of articles to many researchers, as well as the general public. Within the United States, these discussions have primarily focused on the economic perspective—can individuals and institutions afford access to the research publications, and what is the economic impact of providing access free of charge? There have even been proposals to eliminate the copyright for academic works. Even if this economic barrier is removed, however, there is a key point that is generally left out of discussions of open access: is there really open and immediate access for everyone, if scholars and students with disabilities cannot access and use research articles? This article addresses the often-overlooked question of whether research publications are accessible for people with disabilities.

This article presents a socio-legal framework for understanding the stakeholders involved with the accessibility of research publications, specifically discussing content creators, content publishers, and content purchasers. Specifically, the article presents the idea that while U.S. disability rights laws have been used to enforce accessibility upon content purchasers, the existing legal framework for disability rights in the U.S. could also be used to enforce accessibility upon content creators and publishers, for which there is no case law yet.

White, S. (2012). Crippling the archives: Negotiating notions of disability in appraisal and arrangement and description. The American Archivist, 75(1), 109–124.

Have archivists adequately documented people with disabilities? This essay examines how disability studies provide archivists with a framework with which to understand and document disability. After defining the medical and social models of disability, this article analyzes the development of the social model emphasizing the significance of social relationships and identity construction, and recognizes its weakness. As an alternative to the social model, this paper introduces the theory of complex embodiment and demonstrates how embodiment corresponds with archival theory, especially recent literature challenging the definition of provenance. The author concludes that embodiment can be applied to archival practice during appraisal and arrangement and description.

OIPO Disability Abstracts: Disability Poetics

This literature review features resources on disability poetics, including, but not limited to, poetics that are identified or labeled as crip/cripped/crippled, d/Deaf, m/Mad, pain, sick, chronic, psycho, disordered, and more, as other categories and definitions continue to emerge. Also included are published essays and articles with differing perspectives, interpretations, theories, or forms of analyses such as poetic inquiry, form, narrative, meditations, performance, embodiment, “found” poetry, and eco-crip poetics, as well as analyses of works by disabled poets or poets who may or may not have identified as disabled which might be read or perceived as disabled.

Updated 1/16/2025

Alshammari, S. (2022). Disability as metaphor or resilience: A Palestinian poetic inquiry. In H. Shafeeq Ghabra & W. Adel Afifi (Eds.), Writing occupied Palestine: Toward a field of Palestinian communication and cultural studies [Special Issue]. Journal of International and Intercultural Communication, 15(4), 362-373. DOI: https://doi.org/10.1080/17513057.2022.2114528.

People’s attitudes toward illness and disability are a product of how they are informed culturally. Most studies on disability offer quantitative views and apply Western disability models. In this paper, through a series of invoked conversations (morphed into poems) with my Palestinian maternal grandmother and my mother, I examine the concepts of resilience, survival, and historical trauma. By using autoethnography and poetic inquiry, I consider the impact of the Gulf War on Palestinian families and treat survival as a tool informed by Palestinian resilience. Circling back to the attitudes of disability, the disability war metaphor has indeed become real. Rather than dismissing disability metaphors as ableist and harmful, taking due account of the situation of cultural attitudes toward disability and resilience is necessary in Global Disability Studies.

Anonymous 1, Anonymous 2, Anonymous 3, Herd, N., Anonymous 4, & Kalifer, D., with support from E. Kuri & A. Fudge Schormans (2020). Justice vs. injustice: Poetic dialogue about the meaning of disability justice among people labelled/with intellectual disability. In P. D. C. Bones, J. Smartt Gullion, & D. Barber (Eds.), Redefining Disability [Personal/Public Scholarship, Vol. 12] (pp. 84–89). Boston: Brill. DOI: https://doi.org/10.1163/9789004512702_013.

The DiStory project is a multi-year, multi-generational inclusive project in which co-researchers labelled/with an intellectual disability have been collaborating with non-labelled academic and community-based co-researchers to design, develop, and conduct a project whose primary purpose is the co-production of knowledge and development of teaching materials for postsecondary students about the lives of people labelled/with intellectual disabilities. (We use the language labelled/with in recognition of the heterogeneity of people understood to have  intellectual disability and of the hurtful impacts being labelled can have on people’s lives.)

Co-researchers labelled/with intellectual disabilities include survivors of Ontario’s large-scale institutions, as well as younger generations of people labelled/with intellectual disabilities. This was by design. It is a means of preserving and sharing survivors’ history of institutional “care” with younger generations of people labeled with intellectual disabilities who, while never incarcerated in these institutions, nonetheless experience institutionalized care and ongoing experiences of discrimination and violence. It was intended as well to challenge perceptions that the closure of institutions has meant that life is now “better” for people labelled/with intellectual disabilities. Instead, it makes plain that while large-scale institutions may, at this moment, be closed in Ontario, institutions and such forms of care continue, and living “in the community” is no guarantee of a “good life” of one’s choosing.

In what follows, the co-researchers labelled/with intellectual disabilities re-define disability using a framework of disability justice. They do so by using a form of poetic dialogue to contrast meanings of disability (in particular, “intellectual disability”) as articulated in their understandings of “disability justice” and its converse—“disability injustice” (pp. 84-85).

Atkin, P. (n.d.). ‘All the living I have left to do’: A disability poetics of dwelling. In Z. Brigley, K. Evans, & R. A. Mackenzie (Eds.), Dwelling [Feature Issue]. Magma 79.

“What might a disability poetics of dwelling in a time of pandemic look like, feel like, or say? I have found a poetics of resistance and perseverance, of anger, negotiation and joy.”

Barrett, K. U. (2022, January). To hold the grief & the growth: On crip ecologies. Poetry, 219(4), 310-322.

“Crip ecologies, crip time, crip ingenuity, crip spirit radically aim to question root systems that keep our imaginations limited and starved. How can we channel joy within our own skins before there is the stethoscope, the specialist’s jackhammered interrogation, before all the stigma we battle? I am not asking to look beyond it, because these constraints in our beings are here and ever-present. I am asking, as poets, as curious people who want liberation, how do we revel in the grief and also the growth we experience? In what ways does this unpack how we are taught to perceive place and nature?” (p. 312-313).

“Grief and the growth is a term used by Bilen Berhanu and Kay Ulanday Barrett during a panel discussion at the 2021 Sick Concert, an event for newly sick, disabled, and spoonie communities, including people with long-haul COVID-19 and more” (p. 310); this is one of two essays adapted from the “Crip Ecologies” reading and lecture series held at the Poetry Foundation.

Bartlett, J, & Black, S. (2023). Disability Poetics: Poetry of Liberation [Website]. Chicago: Poetry Foundation.

“Disability poetry resonates for us because it is fundamentally a poetry of liberation. As the preface to Beauty is a Verb expressed in 2011, ‘the frangibility of the body, the intersection of body and machine (or body and technology), [and] the commodification of the body’ are all topics disabled poets use to examine the idea of what being human and exploring the vast complexity of that humanity means. Although that preface and its sentiment are still accurate, we might now replace the word body in that quote with the word body-mind. Disability poetics speaks powerfully because it articulates the resistance of bodies and minds to the erasure, commodification, convenience, and disposability articulated all around us and that we struggle against. In this collection, we mean to resist.

This collection is on a rolling launch. Texts, audio, and poets will be added up to the end of 2023; revisit for more included poets, poems, and voices!”

Bartlett, J., Clark. J. L., Ferris, J., & Weise, J. (2014, December). Disability and poetry: An exchange. Poetry, 205(3), 271–284.

In this exchange, several poets discuss disability and poetry, specifically publishing and accessibility as well as form and embodiment.

Best, A. (Ed.). My body, my house: Disability poetics, A poetry mixtape [Website]. Montreal, PQ: Poetry in Voice.

“Disability poetics foregrounds the experiences of people with disabilities. Through poetry, disabled people define, shape, and maintain their relationships with disability. I have actively followed the poets in this ‘Disability Poetics’ mixtape and gathered their poems like talismans; keeping a disabled body moving in an ableist world can feel impossible, but these poets, and their works, have been guideposts.”

Poetry in Voice publishes “Mixtapes” which “provide a playlist of poems for when you want to dive into a subject, idea, or theme.” Each Mixtape includes “liner notes” which share “the thought process behind each Mixtape as well as recommended readings if you want to go even deeper.”

Campana, A. (2022, November). You forbid me to walk: Yokota Hiroshi’s disability poetics. positions, 30(4), 735-762. DOI: https://doi.org/10.1215/10679847-9967331.

This article explores the work of the poet Yokota Hiroshi, a leader in Japan’s disability rights movement, and how he used his experiences of having cerebral palsy to create a new kind of disability poetics. Like in much of the world, Japan in the 1970s saw the emergence of disability movements that aimed to challenge the inaccessibility and cruelty of a society made by and for nondisabled people. Yokota was involved with two key groups of this kind—the literary coterie Shinonome and the activist group Aoi Shiba no Kai—and over several decades published multiple books about the ideologies that justified killing disabled people and the construction of disabled society and culture, as well as several books of poetry. In his poems, he aimed not only to shed light on the oppression and dehumanization of disabled people but to rethink dominant conceptions of embodiment and “able‐bodiedness” itself.

Chong, C. (2023, February 28). Writing my way out: A poetics of illness and disability. The Polyphony: Conversations Across the Medical Humanities [Blog].

Reflecting on their pandemic life living in communal halls as a PhD student at Nanyang Technological University (NTU), Cat Chong considers their practices involved in continually negotiating a chronic illness within the context of Singapore’s circuit breaker measures. [paragraph] The Polyphony is “an online platform for those aiming to stimulate, catalyse, provoke, expand and intensify conversations in the critical medical humanities,” hosted by the Institute for Medical Humanities, Durham University.

Cosantino, J. (2022). “Now don’t say we didn’t warn you”: A poetic meditation on the (im)possibilities of Mad trans time. International Mad Studies Journal, 1(1), e1–14. DOI:  https://doi.org/10.58544/imsj.v1i1.5240.

This poetic meditation explores the (im)possibilities – including imaginaries and dreams, longings and desires, wonders and exhilarations, fissures and fractures, heartbreaks and heartaches – of Mad trans time via the conduit of Mad trans poesis. By placing the complexities of Mad trans subjectivities, meaning making, and knowledge production in relationship to the archive and its residual traces and hauntings, Mad trans time unfolds as a deeply embodied theorizing, challenging and actively disrupting normative temporalities, blurring the artificial boundaries between past, present, and future; knowing and (un)knowing; being and becoming.

Davies, A. W. (2023). Maddening pre-service early childhood education and care through poetics: Dismantling epistemic injustice through mad autobiographical poetics. Contemporary Issues in Early Childhood. DOI: https://doi.org/10.1177/14639491231155555.

In this article, the author forwards the importance of mad autobiographical poetic writing to challenge and disrupt epistemic injustice within pre-service early childhood education and care. They explore their own mad autobiographical poetic writing as a queer, non-binary, mad early childhood educator and pre-service early childhood education and care faculty member, and argue that mad poetic writing can methodologically be used as a form of resistance to epistemic injustices and epistemological erasure in early childhood education and care. This article argues for the importance of autobiographical writing in early childhood education and care, and the necessity of centralizing early childhood educators’ subjectivities and histories when addressing – and transforming – issues of equity, inclusion and belonging in early childhood education and care. The personal and intimate mad autobiographical poetic writing of this article – written by the author – focuses on how personal experience with madness as it pertains to working within pre-service early childhood education and care can challenge norms that govern and regulate madness. Ultimately, the author argues that transformation in early childhood education and care can take place by reflecting on experiences of mental and emotional distress, and considering poetic writings as starting places for imagining new futurities and a plurality of educator voices and perspectives.

d’Evie, F. (2022). Post-humanity. In M. Reason, L. Conner, K. Johanson, & B. Walmsley (Eds.), Routledge Companion to Audiences and the Performing Arts. New York: Routledge. DOI: https://doi.org/10.4324/9781003033226-44.

We call to you with vibrational poetics…

This Short will describe an iterative creative project Essays in Vibrational Poetics that addresses post-human audiences. Informed by radical access principles allied to blindness, and consultations with xenolinguists, the collaborative project unfolds by blundering through a series of experimental trials in embodied and inscribed writing, sensorial translation and performative texts. The essay will operate both as an exercise in critical reflection, especially regarding the significance of disability-led practice for engaging with post-human audiences, and an active thinking-by-writing, allowing the narrative to inflect work currently in development.

Dahl, O. (2025). Understanding disability through collective poetry writing. Qualitative Inquiry Online First. DOI: https://doi.org/10.1177/10778004241308187.

This article proposes a methodology centered on collective, creative engagement to explore marginalized and silenced perspectives on disability. Focusing on collective poetry writing as a qualitative research tool, the article examines the collaborative poetry writings of 16 disabled people, specifically people living with cerebral palsy (CP). Drawing on Gary Alan Fine’s (2012) “Group Life” theory, the article analyzes the social dynamics involved in establishing a shared history through collective poetry writing. It analyzes the emotional bonding among participants and the collective energy that emerged throughthis engagement. These group dynamics served as a resource for re-evaluating and advancing frameworks for writing about, reflecting on, and understanding disability, and for giving people with disability the opputunity to collectively shape knowledge about their own lives. This article discusses how collective poetry writing can be a tool for amplifying often marginalized voices as well as the emerging challenges and methodological dilemmas inherent in the use of this method

Davidson, M. (2012). Disability poetics. In C. Nelson (Ed.), The Oxford handbook of modern and contemporary American poetry [Oxford Handbooks]. Cary, NC: Oxford Academic. DOI: https://doi.org/10.1093/oxfordhb/9780195398779.013.0022.

This article presents an overview of disability poetics that addresses not only poets associated with the movement but also a wide range of poets not typically associated with their disabilities. It argues that disability poetics does not describe a movement or an aesthetic so much as a spectrum of positions around embodiment—from poets like Eigner who seldom referred to his neurological condition to self-consciously “crip” poets for whom poetry is an arm (or leg) of the disability rights movement. It also describes the degree to which poetry is constituted by and within ideas of embodiment, from the “oral” tradition to the foot metric to the most recent versions of stand-up (or sit-down) performance. The twin terms resonate loudly in the U.S. context where ideas of embodiment have been synonymous with antinomian positions of self-reliance and independence, and for which dependence and communality are deemed threatening or, in the worst case, un-American. A disability poetics, while forged within the liberating ethos of the Independent Living movement, creates a site where the putative normalcy of bodies, sensations, and agency can be understood differently. If this has been poetry’s ancient heritage, it is also disability’s utopian horizon.

Davidson, M. (2022). Distressing language: Disability and the poetics of error [Crip]. New York: New York University Press. DOI: https://doi.org/10.18574/nyu/9781479813858.001.0001.

Distressing Language is full of mistakes—errors of hearing, speaking, writing, and understanding. Michael Davidson engages the role of disability and deafness in contemporary aesthetics, exploring how physical and intellectual differences challenge our understanding of art and poetry.

Where hearing and speaking are considered normative conditions of the human, what happens when words are misheard and misspoken? How have writers and artists, both disabled and non-disabled, used error as generative elements in contesting the presumed value of “sounding good”? Distressing Language grows out of the author’s experience of hearing loss in which misunderstandings have become a daily occurrence. Davidson maintains that verbal confusions are less an aberration in understanding than a component of new knowledge.

Davidson discusses a range of sites, from captioning errors and Bad Lip Reads on YouTube, to the deaf artist Christine Sun Kim’s audiovisual installations, and a poetic reinterpretation of the Biblical Shibboleth responding to the atrocities of the Holocaust. Deafness becomes a guide in each chapter of Distressing Language, giving us a closer look at a range of artistic mediums and how artists are working with the axiom of “error” to produce novel subjecthoods and possibilities.

Day, A. (2017). Chronic poetics, chronic illness: Reading Tory Dent’s HIV poetry through disability poetics and feminist bioethics. Journal of Literary & Cultural Disability Studies 11(1), 83-98. https://www.muse.jhu.edu/article/649381.

The article examines the work of Tory Dent, an HIV-positive poet who completed 3 volumes of poetry from 1993 to 2005. Specifically, the article analyzes two poems that capture Dent’s intertextual poetic, cripped sonnet, and bleeding free-form lines, form that mirrors her imagery of pregnancy, miscarriage, and nursing at a time when HIV was understood as an alien invader. Dent’s poetry can best be understood through a disability poetic, highlighting the relationship of the poem to the page and to the embodied reader. Utilizing disability theory from poets Jim Ferris and Petra Kuppers, alongside Hillary Gravendyke’s conceptualization of chronic poetics, the article argues that Dent creates an intertextual poetic that allows for the poem’s form to replace the poet’s body; she also creates a temporal space that allows for multiple accounts of unknowing. The importance of this intertextuality and chronic poetics is explored through feminist bioethics.

Durgin, P. F. (2009, Winter). Post language poetries and post-ableist poetics. Journal of Modern Literature, 32(2),159-184.

This essay brings together the discourses of contemporary disability studies and radical modernist poetics. Reading the textures of subjectivity in the recent work of post-language poet Laura Moriarty, I elaborate on a tradition in U.S. American poetries whose tenets were pivotally formulated in and by language poetry. My central argument is that such poetries contribute methods and materials key to furthering debates within disability studies concerning “dependency theory.” With regard to the latter, special reference is made to Bradley Lewis’s work on “post-psychiatry,” contemporary articulations of “crip” poetics, and the hermeneutic ramifications of “psycho-social disability.” It is post-language poetics that I find first disclose the promise of post-ableist poetics.

Durgin, D. F. (2008, December). Psychosocial disability and post-ableist poetics: The “case” of Hannah Weiner’s Clairvoyant Journals. Contemporary Women’s Writing, 2(2), 131-154. DOI: https://doi.org/10.1093/cww/vpn014.

“While Weiner never self-identified as disabled and her brand of poetic self-awareness conflicts with the tenets of contemporary ‘crip’ poetics, her work has been read as dependent upon other postmodern identity categories, such as her Jewishness, her gender, and her position relative to American paracolonialism (especially the American Indian Movement). This essay aims to utilize the conflicts and confluences between Weiner’s ‘clairvoyant’ work and disability studies’ salient findings and frameworks” (p. 134).

Eales, L., & Peers, D. (2021). Care haunts, hurts, heals: The promiscuous poetics of queer crip Mad care. In S. Snider (Ed.), Lesbian Lives, Disabled Lives [Special Issue]. Journal of Lesbian Studies, 25(3), 163-181. DOI: https://doi.org/10.1080/10894160.2020.1778849.

Care is a dirty word for many in our communities. “Caregiving” has become a euphemism for often-indifferent, under-funded labor that is done to our bodies to (barely) enable our continued survival. Care is a dirty word in many of our leftist-feminist communities. Care work is a classification of highly gendered and racialized labor that remains largely unpaid, underpaid, and deeply devalued. Care is a dirty word in our Mad, disability, queer activist communities. “Taken into care” often refers to indefinite confinement, forced extraction from communities and families, and the removal of one’s right to self-determination. Is care even worth reclaiming? In this creative duo-ethnography, a Mad fat femme and a crip ill non-binary queerdo wander through various moments when care has most impacted our lives, our relationships, and our communities. We have each held one another with care on the precipice of dying. Our bodies have shouldered the love-labor of care in the most intimate, exigent, and banal of moments: consensual and playful medication reminders, postsurgery tampon changing, literally squeezing out another’s breath to stay alive—and then repeating—hundreds of times an evening. We have also experienced care that was much too careful, and anything but full of care. We have shared care promiscuously with our crip and Mad (arts) communities in ways that have been life affirming, life changing, sometimes life making, other times life threatening. Through this wandering with ideas, moments, and communities, we reflect upon multiple dimensions of Mad, queer, crip care. Whom is the caring for? What is our care about? And how can our care be given or giving, taken or shared, offered, enabled, and co-created with flourish?

Eugene, N. C. (2016). Misfits in the front of the classroom: Poetic narratives of teaching with a hidden disability. Kaleidoscope: A Graduate Journal of Qualitative Communication Research, 15, Article 3.

Instructors with a hidden disability may choose to talk with their students about their disability, they may choose to pass as normal, or they may deal with their disability in ways that challenge the binary of showing/hiding. Communication about disabilities occurs in contexts that provide a range of possible cultural values that can work to reinforce an individual’s sense of belonging to a group or organization. To examine how graduate students negotiate their disability or illness in the classroom context, I conducted three interviews with graduate instructors addressing how they communicate their disability in the classes they teach. I learned that these instructors often do not explicitly discuss their conditions with their students. Rather, they performed hidden disabilities in both verbal and nonverbal messages. I perform excerpts of these disability narratives by using poetic transcription to highlight the cultural values that surface in each narrative. I then discuss some implications of how hidden disabilities are expressed in university contexts.

Fenge, L. A., Hodges, C., & Cutts, W. (2016). Performance poetry as a method to understand disability. Forum Qualitative Sozialforschung Forum: Qualitative Social Research, 17(2). DOI: https://doi.org/10.17169/fqs-17.2.2464.

The Seen but Seldom Heard project was a performative social science (PSS) project which used performance poetry to illuminate the experiences of young people with physical impairments. Two performance poets, a group of young people with physical impairments, and academics from social science and media/communication backgrounds worked together to explore various aspects of the lived experience of disability exploring issues associated with identity, stereotypes, stigma and representation. In this article, we will present an overview of the project and consider how PSS offers a method to engage seldom heard voices, and illustrate this through two poems which shed light on the lived experience of disability. The article will consider the impact of these poems as PSS, and how this method allows the audience to develop a deeper understanding of the “lived” experience of disability and to reflect upon their own understandings of disability and discrimination.

Ferris, J. (2004, Summer). The enjambed body: A step toward a crippled poetics. Poetry and “Poiēsis [Featured Issue]. The Georgia Review, 58(2), 219-233. http://www.jstor.org/stable/41402415.

“Body metaphors abound in discourse about poetry. From the basic unit of meter to discussions of language and form, from the long, skinny finger of the dactyl to the poems beating heart and loping flesh, the body is not just an important image in poetry, it is also an important image of poetry” (p. 219).

Gillies, J. L. (2007). Staying grounded while being uprooted: A visual and poetic representation of the transition from university to community for graduates with disabilities. Leisure Sciences, 29(2), 175-179. DOI: https://doi.org/10.1080/01490400601160838.

Visual and poetic representations are used to illustrate how recent university graduates with disabilities experienced the transition from university to the community. As part of a qualitative research project, I interviewed ten recent graduates, analyzed their stories and created a theoretical model/metaphor of a tree within an ecosystem as a form of creative analytic practice. Two poems were also created using transcripts of two graduates who had polarized transitional experiences. The visual and poetic representations work together to illustrate how imperative it is for university alumni with disabilities to be included in, and connected to, various communities upon graduation to facilitate a smooth transition.

Gould, D. (2021). Disability aesthetics and poetic practice. In T. Yu (Ed.), The Cambridge Companion to Twenty-First-Century American Poetry (pp. 106-119). Cambridge, UK: Cambridge University Press. DOI: https://doi.org/10.1017/9781108699518.009.

American poets increasingly began to bring disability into their poetry in a more direct way in the 1980s and 1990s. Along with their embodied experiences living with disability, the work of many of these poets represents their involvement in the disability rights movement and disability culture and puts disability at the center of the poetry by writing primarily for disabled (rather than nondisabled) readers. I call the twenty-first-century poets who continue this tradition of disability culture poetry “crip poetry.” Examples discussed include Meg Day, Leah Lakshmi Piepzna-Samarasinha, Amber DiPietra, Denise Leto, Petra Kuppers, Neil Marcus, Constance Merritt, and Molly McCully Brown. In contrast, I call the twenty-first-century poets who develop disability poetics that are not written primarily for disabled audiences, and that are often based in other aesthetic movements and/or identities, “disability poetry.” Examples discussed include Bettina Judd, Airea Matthews, David Wolach, and Brian Teare.

Gravendyk, H. (2014, Fall). Chronic poetics. In J. Lyon (Ed.), Disability and Generative Form [Special Issue]. Journal of Modern Literature, 38(1), 1-19. DOI: https://doi.org/10.2979/jmodelite.38.1.1.

This essay examines the late work of one poet strongly identified with disability studies in order to offer an account of disability’s role in poetic practice at the turn of the twentieth century. A phenomenological engagement with Larry Eigner’s work demonstrates how traditions of disability studies and formalist discourse can produce a more flexible mode of criticism that incorporates both. What I’m calling chronic poetics extends the reach of disability criticism’s relevance to all bodies, not the disabled body alone. Chronic poetics is a phenomenological account of perception and artistic practice that allows the shared conditions of embodiment to emerge from the text. Thus chronic poetics fulfills the imperatives to significantly address the fact of disability and further to determine whether disability is a meaningful critical frame for thinking about literature.

Hall, A. (2015). Voice and poetry. In A. Hall, U. Heise, & G. De Ferrari (Eds.), Literature and disability (pp. 149-163). New York: Routledge. DOI: https://doi.org/10.4324/97813157265950.

“By focusing on poetry and voice, this chapter addresses an area in which disability studies criticism, with its close attention to narrative, has often remained surprisingly silent (Schweik 49). Recently, scholars such as Michael Davidson, Susan Schweik, Jim Ferris and Petra Kuppers have sought to emphasise the importance of attending to the presence of disability in poetic traditions and to celebrate contemporary works by poets with disabilities through their scholarship. Kuppers, for example, is both a poet and a critic; she suggests that poetry can be socially valuable as a creative and pedagogic practice in its own right: “poetry can perform the binding of community and the singularity of experience” (“Performing Determinism: Disability Culture Poetry” 90). In an image resonant of the tapestry in Titus Andronicus, she suggests that “reading poetry and weaving myself into myth rehearse these pleasures of texts for me…an undoing and doing that binds me to a story, to a people, to a land. In that land, I can lose myself, unbind, and gather again” (“Disability Culture Poetry: The Sound of the Bones. A Literary Essay”). Here, Kuppers seeks to celebrate a sense of collective identity through the recuperation of shared myths, stories and poetic traditions relating to disability, but she also celebrates her own capacity to actively reinvent them in the present day. [paragraph] The poetic examples discussed in this chapter are connected through their concern with questions of voice and voicelessness. The poets discussed draw on different intertextual threads, recalling a long concern with categories of disability and ability in poetry from Milton’s “On Blindness” (1655) and Walt Whitman’s “I Sing the Body Electric” (1867) to Wilfred Owen’s “Disabled” (1917) or Emily Dickinson’s embodied aesthetics. The first section of the chapter explores conditions of physical and social voicelessness in poetry, particularly in relation to the frequent representation of the natural world. The second part focuses on the ways in which the “crip poetry” movement can be understood as a means through which poets with disabilities can find a voice through an interconnected body politics and poetics. Thinking about disability poetics adds to the existing rich tapestry” (pp. 151-152).

Hart, G. (2010). “Enough defined”: Disability, ecopoetics, and Larry Eigner. Contemporary Literature, 51(1), 152–179.

This essay discusses the ecopoetics of disabled poet Larry Eigner.

Hart, G.  (2021). Finding the weight of things: Larry Eigner’s ecrippoetics [Modern and Contemporary Poetics]. Tuscaloosa: University of Alabama Press.

Larry Eigner (1927–1996) wrote thousands of poems in his lifetime, despite profound physical limitations caused by cerebral palsy. Using only the thumb and index finger of his right hand, Eigner generated a torrent of urgent and rich language, participating in vital correspondences as well as publishing widely in literary magazines and poetry journals.

While Eigner wrote before the emergence of ecopoetics, his poetry reflected a serious engagement with scientific writing and media, including Rachel Carson’s seminal Silent Spring. Eigner was writing about environmental disasters and climate change long before such concerns took on a moral incumbency. Similarly, Eigner was ahead of his time in his exploration of disability. The field of disability studies has expanded rapidly in the new millennium. Eigner was not an overtly biographical poet, at least as far as his physical limitations were concerned, but his poetry spoke volumes on the idea of embodiment in all its forms.

Finding the Weight of Things: Larry Eigner’s Ecrippoetics is the first full-length study of Eigner’s poetry, covering his entire career from the beginning of his mature work in the 1950s to his last poems of the 1990s. George Hart charts where Eigner’s two central interests intersect, and how their interaction fueled his work as a poet-critic—one whose work has much to tell us about the ecology and embodiment of our futures. Hart sees Eigner’s overlapping concerns for disability, ecology, and poetic form as inextricable, and coins the phrase ecrippoetics here to describe Eigner’s prescient vision.

Hodges, C. E. M., Fenge, L., & Cutts, W. (2014). Challenging perceptions of disability through performance poetry methods: The ‘Seen but Seldom Heard’ project. Disability & Society, 29(7), 1090-1103. DOI: http://dx.doi.org/10.1080/09687599.2014.9077.

This paper considers performance poetry as a method to explore lived experiences of disability. We discuss how poetic inquiry used within a participatory arts-based research framework can enable young people to collectively question society’s attitudes and actions towards disability. Poetry will be considered as a means to develop a more accessible and effective arena in which young people with direct experience of disability can be empowered to develop new skills that enable them to tell their own stories. Discussion of how this can challenge audiences to critically reflect upon their own perceptions of disability will also be developed.

Holowka, E., Salazar, R., & Turner, L. (Eds.). (2022, Spring). Sick Poetics [Special Issue]. CV2, 44(4).

“Sick Poetics is an issue dedicated entirely to exploring the limits and boundaries of sick, crip, mad, and disabled poetry. The work within this issue comes from emerging and established poets, writing through a wide variety of styles and experiences. Their pieces both contradict and complement as they weave through the complexities of harm and healing, fear and safety, death and life. There is hurt and anger, but there is also joy. As Tanis MacDonald writes, “This is supposed / to be grief; / but so is everything.”

Hoyer, J. M. (2022). Thinking inconveniently: A neuroqueer project on mathematics and lyric poetry. In S. Pfleger & C. Smith (Eds.), Transverse disciplines: Queer-feminist, anti-racist, and decolonial Approaches to the university. Toronto: University of Toronto Press. DOI: https://doi.org/10.3138/9781487538262-012.

[To the reader: I (the author of this essay) am a non-linear thinker. Convention would have me correct this in written expression by laying out ideas one by one, spatially distant from one another; yet for me, comprehension comes when all the ideas are visible at once in an interconnected fashion. The object shown in Figure 8.1 is, I hope, a helpful visualization of what I mean: while there are some pieces of the sphere that are right in front, all the other pieces, and the scissor joints and nodes that connect them, are all always visible. Figure 8.1 is a snapshot approximating how this essay is meant to function–a transverse text to the academic essay. As Transverse Disciplines aims to draw attention to different ways of thinking, and because the subject matter of this essay is my research and the neuroqueer mind that makes it possible, I thought it fitting to construct an essay that allowed the non-linear way in which I perceive and relate information to be visible. The different style and formatting features of the essay are dynamic pieces, joints, and nodes of intentional, consistently potentially visible connectivity, within and beyond this essay.]

Kuppers, P. (2007, April). Performing determinism: Disability culture poetry. Text and Performance Quarterly, 27(2), 89-106. DOI: http://dx.doi.org/10.1080/10462930701251066.

‘‘Performing Determinism’’ discusses the performance of disability through poetry: the instability of language, the ability of words to clasp both generic and specific meaning, and the gaps that surround the performances of self. Disability culture acts as a frame for the inquiry, as the essay discusses crip aesthetics, crip critical practice, and the embodiment of language. In the reading of poems by Jim Ferris and Stephen Kuusisto, disability culture emerges as an impossible horizon of desire, and as the ground for contemporary performances of criticism and writing. Citation becomes performative, and creates repetition in difference.

Kuppers, P. (2013). Decolonizing disability, indigeneity, and poetic methods: Hanging out in Australia. Journal of Literary & Cultural Disability Studies, 7(2), 175-193. DOI: https://doi.org/10.3828/jlcds.2013.13.

The article witnesses encounters in Australia, many centered in Aboriginal Australian contexts, and asks what arts-based research methods can offer to intercultural contact. It offers a meditation on decolonizing methodologies and the use of literary forms by a white Western subject in disability culture. The argument focuses on productive unknowability, on finding machines that respectfully align research methods and cultural production at the site of encounter.

Kuppers, P. (2022, January). Crip ecologies: Changing orientation. Poetry, 219(4), 330-336.

In this essay, the author discusses embodiment and their orientation to “‘crip’ ecologies”—the environment and world around them—and how this orientation “fuels [their] … creative practice,” including personal interactions and creative writing, including poetry. This is one of two essays adapted from the “Crip Ecologies” reading and lecture series held at the Poetry Foundation.

Kuppers, P. (2014). Trans-ing disability poetry at the confluence. TSQ, 1(4), 605–613. DOI: https://doi.org/10.1215/23289252-2815120.

This essay offers a poetics of trans-ing at the confluence of disability culture and trans cultural expression, indigenous naming of the land and performance trance. It discusses work by genderqueer poet Eli Clare and by Anishinaabe poet Margaret Noodin before analyzing the process of a translatory videopoem collaboration between Denise Leto and Petra Kuppers. One difference is not the same as another, but between experimental poetics, assemblage, and occupied land, we sound in the waters.

Kurt, E., et al. (2022, Fall). Coalition-in-progress: Found poetry through phone calls with people labelled/with intellectual disability during the COVID-19 pandemic. In A. Patsavas & T. Danylevich (Eds.), Crip Pandemic Life: A Tapestry [Special Issue]. Lateral, Issue 11(2).

For institutional survivors and their younger peers labelled/with intellectual disability, the COVID-19 pandemic and its related lockdowns carry over past experiences under government-directed isolation and mandatory medical interventions. The sudden convergence of past and present necropolitical ableism in labeled persons’ lives colours this crisis, as we—a group of survivors, younger labeled people (who have not lived in institutions), and researcher/allies—attempt to simply stay in touch amid digital divides that cut off our once vibrant, interdependent in-person activities. No longer able to gather, and with limited Internet (or no) access, we resist social abandonment through phone calls. During phone conversations we discuss the affective contours of this time: grief over the past, loss of agency, restrictive rules in group homes, the dynamics of protest, fear sparked by public health orders, and a mix of anxiety and hope about the future. Taking this telephone-based dialogue as evidence of our lives in these times, we present a brief body of collectively written found poetry, a form of poetic inquiry composed of phone call snippets. This piece, coauthored by twenty members of the “DiStory: Disability Then and Now” project in Toronto, Canada, offers a snapshot of coalition-in-process, keeping in touch amid a crisis that threatens our togetherness and—for some more than others—our lives. Following Braidotti, we couch this found poetry in a brief commentary on our slow, in-progress attempt to “co-construct a different platform of becoming” with one another amid a divergence of historical and contemporary inequities. [paragraph] Note: Each of the authors of this paper made their own decision as to whether to use their full name, first name only, or initials.

Li, R. (n.d.). Sonnets fragmented: The poetics of disability [Website]. Ann Arbor: Author.

“The inspiration for this sonnet webtext arose from Melanie Yergeau’s Digital Disability course at the University of Michigan, Ann Arbor. I recast ideas and language from the readings discussed in the class into poetic form and convey the insights I have gained from the course. Each sonnet is followed by the same sonnet fragmented, the breakage of form mirroring/echoing the disruption of disabled experience by the built physical or digital environment. As disabled experience transcends constraining environments, the line breaks, akin to curb cuts, illustrate the tensions, frictions, and fissures of design. I conceptualize fragmentation as productive, critical, and disharmonious in its intentions and instantiations.”

Loth, L. (2019). ‘The natural elements unchained’: Trauma, disability, and Gisèle Pineau’s poetics of disaster. In J. L. Frengs (Ed.), Le désastre naturel au féminin: Women Writing Disaster in the French-Speaking World [Special Dossier]. Women in French Studies, 27, 34-48. DOI: https://doi.org/10.1353/wfs.2019.0018.

The present article takes the theoretical frameworks of trauma studies and disability studies to consider Guadeloupian author Gisèle Pineau’s use of disaster as a metaphor for mental illness and trauma, while at the same time commenting on historically and materially situated catastrophic events that mark and alter the bodies and psychological conditions of Caribbean women and their communities. In two recent works that shift between figurative and literal imagery of catastrophes, Folie, aller simple (2010), and Les voyages de Merry Sisal (2015), Pineau intersperses disaster imagery and the complex psychological trauma of catastrophic events in what I am calling here a “poetics of disaster.” Whether disaster becomes the metaphor through which trauma and mental illness are articulated, or whether her text explores the lived experiences of survivors of historic disasters, these two texts plumb the depths of a discourse that is rooted heavily within the lexical field of disaster, a linguistic terrain where expressions of psychological trauma and physical disability are often inextricable. Pineau’s work insists upon the necessary inevitability of eruptions, earthquakes, and storms in the Caribbean islands, and by using these events as foils or metaphors for the trauma and psychological disability that result from socio-economic, often gender-based oppression and violence, she brings the question of “natural” and “disastrous” cycles of human behavior into stark relief.

McGrath, J. (2023, March 31). Poetry and stimming. The Polyphony: Conversations Across the Medical Humanities [Blog].

In this blog for World Autism Acceptance Week, James McGrath, an autistic poet and academic, advocates the value of “stimming” and explores how it relates to poetry.

The Polyphony is “an online platform for those aiming to stimulate, catalyse, provoke, expand and intensify conversations in the critical medical humanities,” hosted by the Institute for Medical Humanities, Durham University.

Mintz, S. (2012). Lyric bodies: Poets on disability and masculinity. In D. Nelson (Ed.), Twentieth-Century Poetry: Expanding Archives and Methods [Special Section]. PMLA, 127(2), 248-263. DOI: https://doi.org/10.1632/pmla.2012.127.2.248.

This essay extends the study of disability and masculinity representations by exploring the transformational possibilities of poetry as exemplified in the work of Tom Andrews, Floyd Skloot, and Kenny Fries. It argues that lyricism as a process of invention and play enacts both disability and male identity as equally unfixed and that through an “accidental poetics” each author engages with maleness as a continually renegotiated experience necessitated in part by the conditions of disability. Challenging norms that pertain to them as men with disabilities, resisting the imposition of controlling ideological narratives, Skloot, Fries, and Andrews revise themselves as textual bodies whose unruliness is instantiated and celebrated in the unique structural and figurative moves of verse.

Mironescu, D. (2022). Poetry, disability and metamodernism: Ilya Kaminsky’s Deaf Republic. In L. Milesi & R. Vancu (Eds.), ‘Make It New’ Once Again: Experimental Trends in 21st-Century Poetry in English [Feature Issue]. Word and Text, A Journal of Literary Studies and Linguistics, XII, 95-109. DOI: http://dx.doi.org/10.51865/JLSL.2022.07.

Based on Ilya Kaminsky’s poetry volume Deaf Republic (2019), this article aims at placing contemporary disability poetics at the crossroads of modernism and metamodernism. The first part makes an assessment of the modernist poetics of disability created against the background of the prevalent ableist ideology as it is found in the American and Romanian traditions, and examines the ways in which disabled poets react, creatively and politically, to the tradition of marginalization to which they were subjected. A particular place is given to Deaf poetry and to the limitations it had to surpass socially and creatively. In the second part of the essay, I introduce metamodern affect to sketch out a poetics of disability in the 21st century which overcomes the predicaments of modernist writing and reading codes through a new way of conceiving corporeality, oppression, and relationality.

Mishra, A. (2021). Disability as an existential challenge: Reading the body in Sarah Ismail’s poetry. How Bodies Matter [Special Issue]. Tête-à-Tête: Journal of French and Comparative Literature, 1, Article 5.

“Sarah Ismail’s poetry is against the binaries of life. It is also a questioning of the ideas that are associated with normalcy which in fact are privileged when thought of from the point of view of the disabled individual. The simplest activities of life become difficult for a person with disability. The inability of the disabled person is often blamed on fate and bad luck. But, the disastrous impact that it has on the disabled person cannot be brushed aside. It is very important that the disabled person is able to keep one’s persona intact. It need not be compared with the so-called normal and pushed to feel a sense of lack within. It is only when we as a society will be able to inculcate behavioral changes that we will be able to accept disability as a natural state of being. It is only when this normalcy is restored that we can behave equally as individuals and as a society with people with disabilities. The aim should be to get over the sense of patronization that inadvertently enters the psyche of the ‘normal’ people. There is no scope for excessive sympathy in an exchange between the normal and the disabled subject. This must be done away with in order to ensure that optimal respect and decency is meted out to the disabled subject.”

Mullaney, C. (2019). “Not to discover weakness is the artifice of strength”: Emily Dickinson, constraint, and disability poetics. J19: The Journal of Nineteenth-Century Americanists, 7(1), 49-81. DOI: https://doi.org/10.1353/jnc.2019.0002.

This essay explores how Emily Dickinson’s impairments influence the composition of her poems. From remaining skeptical of medical care to refusing to acknowledge the “Names of Sickness,” Dickinson considers how she might convey disability in ways that challenge diagnostic frameworks. I show how Dickinson’s early fascicle and late scrap poems translate physical impairment into textual form through representations of constraint: a term that both poetry and disability share. The essay begins by assessing the poet’s reclusion (what the field psychiatry termed “agoraphobia” at the close of the nineteenth century), proposing that her references to material enclosures and use of space on the pages of her poems implant spatial constraints that temper feelings of expanse or openness. Next, I explore poems that make explicit reference to blindness and consider how Dickinson’s eyestrain in the mid 1860s influenced the presentation of her poems in bound form. I conclude the essay by positing that Dickinson’s preoccupation with death influenced the unbound form of her late scrap poems. In adopting Tobin Siebers’s “theory of complex embodiment,” the essay reckons with the reality of the poet’s bodily and cognitive constraints to reveal how Dickinson registers disability via textual form.

Nance, S. (2023). Inhabiting duration: Contemporary poetry, chronic illness, and environmental time. Journal of Literary & Cultural Disability Studies, 17(1), 59-75. DOI: https://doi.org/10.3828/jlcds.2023.4.

In examining poetry about chronic illness from the late twentieth and early twenty-first centuries, the article investigates how poets assess and complicate the durations that mark illness. Within the technology-studded healthcare spaces of the 1990s and 2000s, these poems navigate the various scales and technological feats at the forefront of their treatment: the visibility of cancerous cells on an image, the transplantation of an organ, or the amputation of a breast. Although medical technology helps these writers initially traverse the alternative temporalities and scales to which illness draws attention, the poems ultimately move outside of the healthcare realm, instead engaging with environmental spaces. In so doing, these poems come to rely on the expansive timeframes of large-form ecological scale to represent the experience of chronic illness.

Neilson, S. (2020). Getting there: Pain poetics and Canadian literature. In A. Hall (Ed.), The Routledge Companion to Literature and Disability. New York: Routledge. DOI: https://doi.org/10.4324/9781315173047-22.

The preference for narrative within disability studies itself – perhaps more broadly, the privilege of prose over poetry as a substrate for scholarly analysis – is one of the reasons why pain lacks a poetics within the field. In addition to the field’s preference for narrative, another reason to account for the lack of disability pain poetics might be what Mark Osteen has identified as the social model’s “neo-Cartesian duality – its separation of body from mind, of impairment from disability” leading to inadequate theorizations of pain as an experience. A hierarchy is thus established in a formative anthology, though it is a hierarchy shared in disability studies scholarship too. The poem remains in the zone of damage metaphor but the representational strategy is alternative in that the wound is foregrounded in a framework of healing. Trying to determine the bodily location of pain through listening to a patient history is, in medical sense, the point of taking a history.

Nielsen, E. (2016, Fall). Chronically ill, critically crip? Poetry, poetics and dissonant disabilities. Disability Studies Quarterly, 36(4). DOI: https://doi.org/10.18061/dsq.v36i4.5124.

In this hybrid critical-creative paper, I explore disability poetry and crip poetics via my manuscript, Body Work. Poetry provides a site to explore crip experience because, as Petra Kuppers (2007) argues, “poems and their performance of meaning clasp something of crip culture’s force” (p. 103). Here, the “instability of language” (Kuppers, p. 89) provides a way of understanding chronic illnesses as “dissonant disabilities” (Driedger & Owen, 2008). In placing chronic illness in a disability studies framework, and via crip theory, which critiques the common sense naturalness of ability and heterosexuality, I investigate how chronic illness demands ways of understanding that intelligently address mind and body unpredictability. In close, I will revisit Robert McRuer’s notion of “critically crip” arguing that any claim to crip be enacted with intentional criticality.

Nielsen, E. (2021). Chronic poetics and the poetry of chronic illness (in a global pandemic). In C. Kim (Ed.), Pandemics [Special Issue]. Canadian Literature 245, 47-63.

In this paper, I query what the poetry and poetics of chronic illness might offer now, in the time of a pandemic. In doing so, I take up Hillary Gravendyk’s “chronic poetics” which brims with generative potential especially when focused on the poetry and poetics of chronic illness which presents unique insights—not to mention poetic forms—into how to live with uncertainty. Specifically, I turn to Fionncara MacEoin’s Not the First Thing I’ve Missed (2014), Anna Swanson’s The Nights Also (2010), and Leah Lakshmi Piepzna-Samarasinha’s Bodymap (2015) in order to illustrate why chronic illness is a poignant site of living in precarity but also in “collective affinity” (Kafer 10). The poetry and poetics of chronic illness provides a crucial site to explore feminist, queer and crip experience in giving voice to the intensity of living with mind, body, and/or bodymind unpredictability.

Nygren, A., & Bertilsdotter Rosqvist, H. (2022). Theorizing autistic sexualities as collective poetic experiences. In R. Rozema & C. Bass (Eds.), Sexuality [Feature Issue]. Ought: The Journal of Autistic Culture, 4(1), Article 6.

This article is a palimpsest emerging as part of a project of collective autoethnographic writing on the theme of sexuality. It draws on the intensification of friendly writing, friendly as in friends with benefits. We write as autistic and neuroqueer subjects, writing until our textualities becomes sexualities. We write until the text becomes a room – call it Earth or call it Body, call it Brain or call it Heart – in which one could crack meanings―but these are not the most important ones. Instead of meanings and positions, we want to write about movements in time. The time it takes to read a body that is never a body of your own but a part of a tiny orchestra. The time it takes to formulate a voice that speaks through mutism. This peculiar collection of letters works with our writing subjects as moments of memories. Reliving sexual moments – renaming sexual moments as sexual moments. Writing becomes an act of embodied and embrained tension and fusing. Maybe the text will revive in your hands—by reading it, you will write another version with us, of you. We are sensory strangers fucking through texts. Come play with us.

Owen, A. (2023). Brotherhood of the Wordless: Voiceless wonders. In L. G. Phillips & T. Bunda (Eds.), Storying social movement/s [Palgrave Studies in Movement across Education, the Arts and the Social Sciences]. Cham: Palgrave Macmillan. DOI: https://doi.org/10.1007/978-3-031-09667-9_5.

This chapter stories the movement of The Brotherhood of the Wordless, a group of creative writers formed in 2003. The members of this group live with a diverse range of disabilities, the most disabling being their inability to use oral speech to communicate. However, when given the opportunity and individualised assistance to communicate via typing they could clearly and consistently demonstrate their hidden capacity to not only communicate fluently but write creatively. Through meeting, writing, publishing, and performing, Alice Owen, Speech Pathologist and Dance Therapist, and various poets and creative writing tutors have worked with the Brotherhood (see http://brotherhoodofthewordless.com) to facilitate the joy of using words creatively and sharing the extraordinary results as widely as possible with spoken word performers at festivals and community events, social media and publications. Alice shares how through the Brotherhood’s creative writing, members have at last been recognised as people with something to say. When the members move into the Arts world as opposed to the labelled Disabled world, their talent is applauded and valued and they now self-advocate individually and as a group for changes in the way the Disabled world operates to keep people captive in a system with low expectations, learned helplessness, and lack of choice and control. The Brotherhood meets multiple times each month driven by the urge to continue to connect, create, and support each other and to fight for change in the systems that denied them the means to express themselves and participate fully in society. Through the movement, they have collectively transcended these difficulties and are determined to keep telling their stories.

Pafunda, D. (2012, March). The subject in pain: A poetics. In J. Carr & J. Rivera (Eds.), The Shape of the I: The Response Issue [Special Issue]. English Language Notes, 50(1), 93–98. DOI: https://doi.org/10.1215/00138282-50.1.93.

Petra Kuppers writes about the feminism/embodiment/disability/poetry/performance (FEDPP) research project, an arts-based inquiry conducted with a number of experimental feminist poets who see themselves in relation to disability. The essay uses a cultural studies lens to trace how acts of poetry-making situate themselves in community building and experimentalism. How can poetry-ing speak to experiments at the level of sociality? How can we find accessible forms of being open to one another? How to create art in the presence of pain and alienation, without causing it? How to provide artful comfort without closure? These are the FEDPP project’s core questions.

Pérez Casanovas, A. (2023). On the borderlands of Madness: Narrative tactics of resistance in C. P. Gilman’s The Yellow Wallpaper and Disability Justice. In Pragmatism and Feminism. Epistemological, Social, and Political Spaces of Resistance Symposia [Special Issue]. European Journal of Pragmatism and American Philosophy, XV-1. DOI: https://doi.org/10.4000/ejpap.3250.

Storytelling is a central device in cultures of resistance, which enables us to trace back such cultures to precedents in the history of literature that in turn can furnish new strategies of resistance by providing narrative tactics. This paper argues that Charlotte Perkins Gilman’s short story The Yellow Wallpaper develops narrative tactics of resistance which can be fruitful for contemporary Mad Pride activism and poetic practices. To do so, I borrow a Foucauldian approach to account for how Gilman challenges the psychiatric industrial medical complex in her writing. First, the story is contextualized in nineteenth-century American psychiatry, and some critical warnings on the writer’s position concerning liberation movements are offered. Subsequently, I focus on three narrative tactics of resistance deployed in The Yellow Wallpaper: (1) an indetermination of genre, (2) a tension between form and dementia, and (3) a double subjectivity in the oscillation between the pronouns “one” and “I”. Finally, the reassessment of Gilman’s writing from the lens of Disability Justice is summarized in two results: first, it strengthens the grounds of Mad Pride by imbricating it in American literary and philosophical canons and, second, it provides tactics to open spaces of resistance for contemporary authors in the movement.

Pickens, T. (2021). Ghosts of disability in Naomi Shihab Nye’s Transfer. In C. Wu, C. Y. Lie, J. Kupetz, & J. B. Kim (Eds.). Sex, identity, aesthetics: The work of Tobin Siebers and disability studies (pp. 77-80). Ann Arbor: University of Michigan Press. DOI: https://doi.org/10.3998/mpub.11769364.

“In what follows, I explore the ghosts of disability within Arab American poetry. Broadly speaking, ghosts feature as a trope within Arab American literature, symbolizing and working within a liminal space that muddies the demarcations of past, present, and future and, often, intervening in characters’ or speakers’ lives to wild effect. Given the tradition’s emphasis on memory—historical and cultural—this particular trope gains political resonance as a way to reckon with or launch a critique. Ghosts of disability are an intriguing form of said trope since they insist not only on the murkiness of temporality and memory but also question the unimpeachability of disability as corporeal. To be clear, ghosts of disability are distinct from disabled ghosts—those rattling chains for madness’s sake or those haunting the places or people responsible for a crucial (possibly fatal) physical or mental injury; that is, ghosts of disability are those that lived with disability such that their memories or their legacies would be incomplete without incorporating the complexity of disability into their narrative. These ghosts create afterlives of disability then, where despite disability being noncorporeal, it remains complex, mercurial, and influential. I examine Naomi Shihab Nye’s poetry collection Transfer (2011) for how Nye’s father, Aziz Shihab, a displaced Palestinian who died of cardiac and renal failure, becomes a ghost of disability and, withal the unruliness that entails, shifts the poetics of the collection itself.”

Quinlan, M. M., & Harter, L. M. (2010). Meaning in motion: The embodied poetics and politics of Dancing Wheels. In H. Rose & J. Ferris (Eds.), Emergent Poetics [Special Issue]. Text and Performance Quarterly, 30(4), 374-395. DOI: https://doi.org/10.1080/10462937.2010.510911.

This essay examines poetic sense-making and illustrates the significance of numerous story forms, including dance, for organizations that do the work of social movements. We demonstrate how meaning emerges through motion, even as it is expressed and negotiated in language in two vital ways. First, we engage the early work of Kenneth Burke to explore the poetic nature of storied forms and connect it with contemporary studies of dance that emphasize the agency of bodies. Second, we illustrate the efficacy of this position by bringing into focus the efforts of The Dancing Wheels Company & School, a modern dance company integrating professional stand-up and sit-down (wheelchair) dancers in performances that seek to transform public understandings of disability. We construct an account of how the studio and its members rely on movement and other signifying practices to engage, orient, and motivate contemplators, remember history, and enlarge possibilities for individuals marked as disabled.

Ritchie, J. (2024). “i write unbalanced poetry”: Memory, Complex Embodiment, and Bernadette Mayer’s Late Works. Journal of Literary & Cultural Disability Studies Ahead of Print. DOI: https://doi.org/10.3828/jlcds.2024.28.

In examining changes to Bernadette Mayer’s writing style following her cerebral hemorrhage in 1994, the article investigates the ways in which Mayer’s poetics have been informed by disability. Positioning the effects of her stroke not as limitations but as capacities for generating new knowledge, Mayer’s embodiment of disability in her late work also provokes a reassessment of her early work. Asserting that disability complicates normative time frames, an analysis of Mayer’s relationship to and representation of time reveals that disability informed her poetics not only after her stroke, but in anticipation of it, too. Drawing on archival evidence from Mayer’s papers and correspondence at the University of California San Diego, improvisation is established as a dominant feature in her late work, while the anticipation of disability in her early work contributes to the development of performance-inflected poetics.

Roberts Bucca, K. (2023). A schizo-poetic inquiry of a first-year doctoral Experience. Art/Research/International:/A/Transdisciplinary/Journal, 8(1), 100–124. DOI: https://doi.org/10.18432/ari29652.

Undertaking a doctoral program is a significant commitment involving sustained effort as an individual engages in academic work and scholarly identity formation. As a graduate student with a psychiatric disability, I face an added layer of challenge: dealing with symptoms as I navigate an academic system that is not designed for bodyminds like mine. This poetry and visual art collection offers a glimpse into my experience as a first-year doctoral student with schizoaffective disorder as I navigated Zoom classrooms, considered academic timelines and campus mental health awareness week, and wrestled with symptoms during the summer session. Through a schizo-poetic and visual inquiry informed by disability poetry and schizo-poetics, I present an embodied, multi-sensory exploration to highlight similarities and differences in the experiences of doctoral students with mental illness and their neurotypical peers, as well as to expand the conversation around disability and academia.

Rodas, J. M. (2018). Autistic disturbances: Theorizing autism poetics from the DSM to Robinson Crusoe [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press. DOI: https://doi.org/10.3998/mpub.9365350.

While research on autism has sometimes focused on special talents or abilities, autism is typically characterized as impoverished or defective when it comes to language. Autistic Disturbances reveals the ways interpreters have failed to register the real creative valence of autistic language and offers a theoretical framework for understanding the distinctive aesthetics of autistic rhetoric and semiotics. Reinterpreting characteristic autistic verbal practices such as repetition in the context of a more widely respected literary canon, Julia Miele Rodas argues that autistic language is actually an essential part of mainstream literary aesthetics, visible in poetry by Walt Whitman and Gertrude Stein, in novels by Charlotte Brontë and Daniel Defoe, in life writing by Andy Warhol, and even in writing by figures from popular culture.

Autistic Disturbances pursues these resonances and explores the tensions of language and culture that lead to the classification of some verbal expression as disordered while other, similar expression enjoys prized status as literature. It identifies the most characteristic patterns of autistic expression-repetition, monologue, ejaculation, verbal ordering or list-making, and neologism-and adopts new language to describe and reimagine these categories in aesthetically productive terms. In so doing, the book seeks to redress the place of verbal autistic language, to argue for the value and complexity of autistic ways of speaking, and to invite recognition of an obscured tradition of literary autism at the very center of Anglo-American text culture.

Rogers-Shaw, C. (2021). Enhancing empathy and understanding of disability by using poetry in research. In N. Dickson & D. E. Clover (Eds.), Adult Education, the Arts and Creativity [Special Issue]. Studies in the Education of Adults, 53(2), 184-203. DOI: https://doi.org/10.1080/02660830.2021.1920740.

Research poetry, valuable for its poignancy and creativity in analysing and presenting data, can enhance comprehension of research content, move political policy by drawing on readers’ emotional connection to participants, inspire social justice activism, and increase accessibility to disability research. The field of adult education acknowledges and strives to address issues of social justice by amplifying voices that are often unheard. Using research poetry, scholars can challenge hegemony not only through research content but also through their writing format, particularly in disability research that considers society’s traditionally accepted view of an ideal human body.

Salerno, C. (Ed.). (2022, August). A Forum on Disability Poetics — curated by Christopher Salerno. Tupelo Quarterly 27.

An expansive, curated folio of poetry focusing on intersectional disabled experiences.

Savarese, R.J. (2013). Toward a postcolonial neurology: Autism, Tito Mukhopadhyay, and a new geo-poetics of the body. In M. Wappett & K. Arndt (Eds.), Foundations of Disability Studies (pp 125–143). New York: Palgrave Macmillan. DOI: https://doi.org/10.1057/9781137363787_7.

In the preface to his best-selling book An Anthropologist on Mars, Oliver Sacks contends that he is no ordinary doctor/author. “I have taken off my white coat,” he declares, “deserted, by and large, the hospitals where I have spent the last twenty-five years … feeling in part like a naturalist, examining rare forms of life; in part like an anthropologist, a neuroanthropologist, in the field—but most of all like a physician, called here and there to make house calls, house calls at the far border of human experience” (xx). The case studies that make up the book are thus intended less as explorations of neurological pathology than sympathetic portraits of human diversity. Yet the good doctor wants it every which way. His shifting metaphors and anachronistic fantasy work to humanize the scientific authority required to tell these stories, but the authority itself is never renounced, nor is its connection to a pathologizing impulse. Indeed, both remain in the kinder, gentler figure of the physician or anthropologist. Apparently oblivious to the oppressive history of anthropological endeavor, Sacks, for example, reinscribes the center/margin binary that makes colonialism possible, exactly as he would have us believe in his folksy goodwill.

Scheuer, C. (2011). Bodily compositions: The disability poetics of Karen Fiser and Laurie Clements Lambeth. In E. Donaldson & C. Prendergast (Eds.), Disability and Emotion: “There’s No Crying in Disability Studies!” [Special Issue]. Journal of Literary & Cultural Disability Studies, 5(2), 155-172. DOI: https://doi.org/10.3828/jlcds.2011.13.

The article focuses on the poetry of Karen Fiser and Laurie Clements Lambeth to examine how poetic language and form are shaped by both the poets’ bodies and the way that their bodies relate to their environments, to spaces and institutions both private and public. Poetic language allows these writers to articulate the layered, enigmatic relationship between the particularity of somatic “feelings”—the body’s experience of itself and the spaces and objects with which it interacts—and emotional expression. Both poets develop an aesthetics that reflects the body’s particularity and that explores the tension between the limits and possibilities of communication in speaking about emotion and illness. As aesthetic objects that bridge the gap between the sayable and the unsayable, these poems can be circulated, not only forging new communities of poets and critics, but also extending or changing the terms of the conversations that people are having about disability, the body, aesthetic theory, accessibility, and communication. Through the creation of new, startling, and nuanced metaphors and images, disability poetry can begin to alter the “objects of emotion” that circulate in public discussions of disability.

Schumer, L. (2018, May 18). Finding communion in disability poetics. The Ploughshares Blog [Website].

A personal essay discussing disability poetics and how the genre helped the author understand and cope with systemic ableism and “enables readers with different abilities to see themselves portrayed in a clear, unsentimental way. It also gives voice to a population that mainstream society often tokenizes, while acting as a driver toward social change. I found the genre, like I suspect many do, at the very moment when I needed that guidance the most.”

Simmons, M., Carolus, G., & Kalla, M. (2024). Stories of chronic illness: exploring qualitative data through poetic transcriptions. Medical Humanities Published Online First. DOI: https://doi.org/10.1136/medhum-2024-012918. 
As a research technique, poetic transcription transforms people’s stories and enables deeper analysis and engagement between participants, readers and researchers. Chronic illness is often characterised as a ‘biographical disruption’, which may threaten a patient’s self-identity and equanimity. Such disruptions often influence patients’ perceptions of imminent life changes, social relationships and cognitive and material resources. Thus, poetic transcription offers a valuable tool for making sense of complex illnesses and lived experiences. This paper demonstrates how raw interview data can be reconstructed into a poetic format to highlight the nuances of people’s lived illness experiences, which may remain elusive to them and others. A qualitative survey was conducted with a small group of patient participants, eliciting chronic illness narratives analysed through poetic transcription. Poetic transcription becomes a rigorous and legitimate qualitative research method through multiple iterations and extensive data engagement. Our main themes are focused on biographical disruption, temporality, humour, voice and ableism.

Smith, P. (2001, October). Inquiry cantos: Poetics of developmental disability. Mental Retardation, 39(5), 379-390. DOI: https://doi.org/10.1352/0047-6765(2001)039%3C0379:ICPODD%3E2.0.CO;2.

Postmodern thought is increasingly critical of foundations central to modern, positivist research into the lives of people labeled as having so-called developmental disabilities and mental retardation. This approach has brought about changes in how developmental disability is both understood and, ultimately, created. Responding to what has been called the postmodern turn, some disability studies scholars are choosing to represent their work in alternative textual formats, including poetry and fiction. These texts, representing multiple subjectivities, offer ways to explicate, problematize, and reconstruct new ways of understanding so-called developmental disability that are complex and plural. Examples of alternative research texts are provided from a recent qualitative research project with self-advocates and their construction of choice, control, and power.

Smith, P. (2018). Writhing writing: Moving towards a mad poetics. Fort Worth, TX: Autonomous Press.

“To dive into Phil Smith’s writing – a dazzling blend of poetry, ethnography, social critique, and gleefully mad wordplay – can feel more like taking a psychedelic drug than like reading the work of a distinguished scholar. And yet, a distinguished scholar he is. For two decades, he has been a bold trailblazer and innovator in the realms of education, disability studies, mad studies, neurodiversity, and poetry, and in exploring how these realms can interconnect and inform one another Each chapter of this book is a poetic thought experiment that shreds cultural norms and assumptions, points the way toward new creative directions in scholarship, and might make your brain explode” (Nick Walker, Author, educator, and neurodiversity scholar).

Swafford, S. (2023). On a scale of one to ten: A lyric autoethnography of chronic pain and illness. In M. S. Jeffress, J. M. Cypher, J. Ferris,  & J. A. Scott-Pollock (Eds.), The Palgrave Handbook of Disability and Communication (pp. 129-144). Palgrave Macmillan, Cham. DOI: https://doi.org/10.1007/978-3-031-14447-9_9.

This chapter layers poetry and prose in a lyric autoethnography to explore and exemplify the “crip time” of living with chronic pain and illness. Through poetic personal narrative, the author illustrates her disjointed, nonlinear experience of disability. Building upon the work of scholars who have turned to autoethnographic and poetic inquiry for doing disability studies research, this chapter demonstrates the possibilities of lyric autoethnography for humanizing sterilized medical discourses and constructing textual representations of crip time. The author uses the pain scale as a framework for assembling poetic narrative fragments in a nonlinear layered account, turning the restrictive numerical measure into a heuristic for writing with and through chronic pain and illness.

Tierney, O. (2020, December). Disability poetics: Media, performance, technology [Special Issue]. Amodern 10.

“In this special issue, contributors attend to the intersections of the body-mind with poetry, media, performance, and technology to unpack the meanings of disability and being disabled. The poetics – and politics – of disability makes possible multifarious forms of invention, while challenging received cultural assumptions about body-mind functionality. The contributors engage disability as it informs and is informed by embodied experiences of race, class, kinship, gender, sexuality, and location. Their essays approach the poetics and politics of disability to apprehend the body and mind, while thinking through how language, performance, and technology critically shape both representation and situated experience. This special issue underscores that to stage poetry – and the language we use to examine, describe, study, write, or imagine the poetic object – in relation to a wide spectrum of embodiment and cognition is to critique and reimagine the representations that reduce the disabled body and mind to clinical protocols. How does new media reimagine the interiority of the body-mind? How do sensory experiences expand into technological spaces? Where do ideas of body and mind collide with the transformative context of textual and physical bodies?”

Tsaplina, M. (2020, July). Bodies speaking: Embodiment, illness and the poetic materiality of puppetry/object practice. Journal of Applied Arts & Health, 11(1-2), 85-102. DOI: https://doi.org/10.1386/jaah_00020_1.

The theoretical turn to object ontologies in the social sciences and the humanities brings puppetry work related to illness, disability and health to the forefront of artistic practice-as-research, disability studies and the medical/health humanities. Articulating chronic illness and disability through the tools and practice of puppetry animation can help form complex embodiment, where the person is empowered to value their embodiment as a site of knowledge. Puppetry pedagogy can train the bodies of medical students and clinicians to develop the capacity for embodied attunement and may decolonize both the knowledge of the body and medical education by reunifying mind, body and imagination. By training to perceive materials both physically and poetically, puppetry allows silenced bodies and histories to speak.

Unger, M. I. (2013). “Dropping crooked into rhyme”: Djuna Barnes’s disabled poetics in The Book of Repulsive Women. In Women Writing Disability [Special Issue]. Legacy, 30(1), 124-150. DOI: https://doi.org/10.5250/legacy.30.1.0124.

“In the early decades of the twentieth century, Djuna Barnes envisioned modern poetry as perhaps the last space for the ugly, disabled, and unsightly in America—a metaphorical and imaginative space, of course, but a realm nonetheless open to ideological, physical, and aesthetic differences in American culture. While the rest of the country grew increasingly enamored with the standardizing ethos of the new century that sought to excise physical difference from public space, Barnes turned to avant-garde verse to imagine a new body for American women that celebrated rather than sterilized American difference. Scholars have hailed Barnes’s Nightwood for liberating the modern subject from racial, sexual, and gendered restraints, but it is actually her largely forgotten early poetry that places her at the center of disability discourse in the modern American scene. Her first published collection of poetry, The Book of Repulsive Women, rejects the principles of the American System—a national program of standardization that flourished in the early decades of the twentieth century—and instead indulges in the unsightly, the non-normative, and the vulgar. Published in 1915, this chapbook contains eight “rhythms” that feature ugly and disabled women and five drawings that illustrate human difference within US literature and culture, puzzling together a modernism out of American non- normativity rather than American standards of order, efficiency, and control. In this way, Barnes fashions disability as a modernist and particularly feminine aesthetic for American poetry, a cultural medium that in turn offers a place for the unsightly that national space no longer provided” (p. 124).

von der Weid, O., Monte do Vale, G. M. do S., Oliveira Gonçalves, C. C., & Guaraná Bello, R. de C. (2022). Corpogravure of a circle meeting: Poetics and politics of blind women in Brazil. In A. Allen, C. Penketh, & A. Wexler (Eds.), Thematic Issue on Disability Justice: Decentering Colonial Knowledge, Centering Decolonial Epistemologies. Research in Arts and Education, 2022(3), 65–74. DOI: https://doi.org/10.54916/rae.125087.

This text is an ethnographic report of shared authorship between members of the Brazilian Movement of Blind and Low Vision Women and the anthropologist Olivia von der Weid. We interweave embodied narratives about the unique ways in which the experience of being a visually impaired woman is expressed in their bodies and lives. Understanding that the bonds and connection established in a circle with other women is a fundamental link in the composition of this collective, members of the movement share their marks and what they have inaugurated in themselves, their ways of re-existing after the destabilizations experienced in their training and employment trajectories. Bringing the body, gestures, and movement as motivating elements of exchange and production of knowledge, treating skin as a map of our experiences, we compose here a live image of an event, a corpogravure, with the embodied words of visually impaired women and what they reverberate.

OIPO Disability Abstracts: Disability Arts and Culture

This is a preliminary literature review of disability arts and culture, inclusive of the fine arts, film, music, exhibitions, drama and performance, cultural life and spaces, disabled artist experiences, art education, and more.

Updated 4/17/2024

Acton, K., Czymoch, C., & McCaffrey, T. (2021). Collaborating on Togetherness and Futurity in Disability Arts [Video]. In K. Brown, F. Cervera, K. Iwaki, E. Laine, & K. van Baarle (Eds.)., Collaborative Research in Theatre and Performance Studies [Joint Special Issue with the Journal of Dramatic Theory and Criticism]. Global Performance Studies, 4(2). DOI: https://doi.org/10.33303/gpsv4n2a10.

“Access is one of the ways in which disability arts brings people together. Therefore, this video models audio description and captioning. Audio description is the practice of representing the visual through words (Snyder), providing access to Blind, low vision and neurodivergent people, whose brains function in ways that are outside society definitions of normal (Walker). Captioning interprets sounds, including language, through written words, providing access to Deaf, deaf, hard of hearing and neurodivergent people by making sound visual (Zdenek). In doing so, we hope to share some of the ways access can bring people together.”

Acton, K., Czymoch, C., & McCaffrey, T. (2021, Fall). Collaborating on togetherness and futurity in disability arts. Journal of Dramatic Theory and Criticism, 36(1), 195-121. DOI: http://doi.org/10.1353/dtc.2021.0028.

Kelsie Acton, Christiane Czymoch, and Tony McCaffrey met online through the Performance and Disability Working Group of the International Federation for Theatre Research in July 2020. Over the past six months, we continued to discuss our very different disability arts contexts. But we found ourselves asking similar questions about being together. How can we be together? What are the dangers of togetherness? What is the future for disabled artists—all disabled people—in a world where the pandemic has heightened the threat a eugenic, ableist society poses for disabled people? We have no answers. What we instead offer is collaborative thinking in-process, drawing upon theorists such as Mingus (2017), Puar (2009), Yergeau (2017), Bowditch and Vissicaro (2017) and Māori concepts of koha (gift) and mana (honor, respect, right to personhood) as applied to performance. These conversations inform this annotated transcript. As access is an essential part of being together in disability culture, our transcript includes visual description and plain language summaries of each section of the conversation.

Artpradid, V. (2022). Integrated and inclusive. In M. Reason, L. Conner, K. Johanson, & B. Walmsley (Eds.), Routledge Companion to Audiences and the Performing Arts. New York: Routledge. DOI: https://doi.org/10.4324/9781003033226-36.

This Short explores how prevailing definitions of the terms ‘integrated’ and ‘inclusive’ dance reinforce the disabled/non-disabled binary and can become a limitation for dance artists, particularly when they are positioned within these categories and not the broader field of dance. However, as a form of artistic communication that creates spaces where artists and audience members engage the politics of corporeality together, the practices can resist, question and stretch the art form and ways of understanding the phenomenon known as disability. Thus, integrated and inclusive dance have the potential to expand and democratise social categories through their capacity for social inquiry.

Attias, M. (2020, Summer). Exploring the implications of Melanie Yergeau’s neuroqueer for art education. In C. N. Wolfgang (Ed.), Queering Art Education [Special Issue]. Visual Arts Research, 46(1), 78–91. DOI: https://doi.org/10.5406/visuartsrese.46.1.0078. 

Yergeau’s concept of neurological queerness disrupts dominant cultural expectations of prosocial behaviors in the classroom, questioning how intention and sociality operate to remove the voices of neurodiverse individuals. Considering haptic engagement and material investigation in the arts classroom as potential sites for neurodiverse rhetorics to emerge challenges art educators to think about what access means within the classroom environment, as well as the narratives they ascribe to students’ asocial or antisocial behaviors. The neurologically queer have their own rhetorics of expression, which, if permitted to emerge within the arts classroom, create possibility for agency and expression. Art is a powerful rhetorical tool for self-advocacy and legibility, as it demonstrates what cannot be expressed through prosocial means. Counter-rhetorics of art and art making dismantle normative assumptions that privilege speaking and writing.

Backhausen, E., Wihstutz, B., & Winter, N. (2023). Out of time? Temporality in disability performance [Routledge Series in Equity, Diversity, and Inclusion in Theatre and Performance]. London: Routledge. DOI: https://doi.org/10.4324/9781003271154.

Out of Time? has many different meanings, amongst them outmoded, out of step, under time pressure, no time left, or simply delayed. In the disability context, it may also refer to resistant attitudes of living in “crip time” that contradict time as a linear process with a more or less predictable future. According to Alison Kafer, “crip time bends the clock to meet disabled bodies and minds.” What does this mean in the disability arts? What new concepts of accessibility, crip futures, and crip resistance can be staged or created by disability performance? And how does the notion of “out of time” connect crip time with pandemic time in disability performance?

The collective volume seeks to respond to these questions by exploring crip time in disability performance as both a concept and a phenomenon. The book tackles the topic from two angles: on the one hand from a theoretical point of view that connects performance analysis with crip and performance theory, on the other hand from a practice-based perspective of disability artists who develop new concepts and dramaturgies of crip time based on their own lived experiences and observations in the field of the performing and disability arts.

The book gathers different types of text genres, forms, and styles that mirror the diversity of their authors. Besides theoretical and academic chapters on disability performance, the book also includes essays, poems, dramatic texts, and choreographic concepts that ref lect upon the alternative knowledge in the disability arts.

Bailey, S. (2021, September). Entangled bodies. Art Monthly Issue 449,  9-12.

Taking a recent curatorial project, ‘Activating Captions’, as a departure point, Stephanie Bailey considers the ways in which artists and audiences are marginalised by definitions of disability that derive from an ‘ideology of the abled’ and asks how, through greater understanding and shared experience, we might achieve real intersectionality.

Britton, L., & Paehr, I. (2021). MELT: Con(fuse)ing and Re(fusing) Barriers. In C. U. Andersen & G. Cox (Eds.), Refusing Research [Feature Issue]. APRJA, 10(1), 70-82. DOI: https://doi.org/10.7146/aprja.v10i1.128188 

In Con(fuse)ing and Re(fusing) Barriers, we activate the practice of coalescing to discuss and propose trans* and neuroqueer ways of refusing access barriers and normative expectations. Drawing from trans* feminism, crip technoscience, embodied experiences and our arts-design practice as MELT, we attend to ritual making as a crip and trans* site of resistance. Rituals are activated throughout the text as practices that reduce access barriers, change habits, slow things down, or enact community rites of passage. We refuse (as in: fuse again) and confuse (as in: reconsider assumptions) separability, and trace how materials unfold in our arts-design experiences: concrete and errors become soft, rituals disorder normative space, and cosmic rays embrace neuroqueer understandings of computing. This text is an invitation to share and embrace rituals and refusal as interrelated modes that can make space for other worlds.

Bunch, M., Chan, J., & Lee, S. (2022). Access Aesthetics [Special Issue]. Public, 33(66).

“Our focus is access aesthetics, a political aesthetics that arises at the scene of a vibrant crip arts movement. Rather than conceiving of access as an accommodation to include people with nonnormative bodyminds in mainstream spaces and experiences, access aesthetics transforms such spaces by centring crip ways of sensing, perceiving, and knowing. The foundational premise is an understanding of disability that goes beyond both pathologizing models that define disability as lack and liberal approaches that seek to make current systems more accessible. Rather, disability is an expected, generative, variable aspect of human experience; a complex, embodied, and interdependent orientation in the world, a site of intersecting oppression and a movement for justice. Access aesthetics advances a prefigurative, justice-oriented understanding of access based on social transformation rather than assimilation to normative systems. It incorporates access as integral to the concept and execution of art. This issue on access aesthetics was initiated as a follow-up to PostScript, an online series on accessibility, disability, and digital publishing, hosted by Public Access in October 2020. This series brought a critical disability lens that viewed accessibility as integral to digital publishing. This issue includes many of the contributors to PostScript (p. 7).”

Content in this issue includes an introduction and the following contributions:

Busselle, K., Kaplan, E., & Yates, S. (2022). The ethics of care in pedagogy and performance: Intersections with disability justice, intimacy work, and Theatre of the Oppressed. Journal of Dramatic Theory and Criticism 37(1), 13-28. DOI: http://doi.org/10.1353/dtc.2022.0012.

This article argues that an applied ethics of care practice is central to the work of addressing the patriarchal and racist practices embedded within both professional and educational theatre spaces and their protocols and policies. Many theatre faculty in both the classroom and in rehearsal spaces encounter students’ trauma(s), but often lack the tools to adequately guide students down from that trauma once it has been activated. In this article, Kate Busselle, Erin Kaplan, and Samuel Yates theorize what ethics of care in theatre and performances spaces might look like when creating systems and structures to protect students from future harm, address potential trauma in the moment, and mitigate the damage incurred from past experiences. Building from the foundations of feminist ethics of care theorists such as Virginia Held, Lisa Tessman, and Leah Lakshmi Piepzna-Samarasinha, the authors share strategies for establishing ethical care processes to safeguard students in the classroom and in rehearsal spaces.

Cameron, C. (2007, October). Whose problem? Disability narratives and available identities. Community Development Journal, 42(4), 501–511. DOI: https://doi.org/10.1093/cdj/bsm040.

In this article, the author demonstrates that contemporary cultural disability discourses offer few positive resources for people with impairments to draw upon in constructing positive personal and social identities. Examining the emergence of the Disability Arts Movement in Britain, consideration is given to alternative discourses developed by disabled people who have resisted the passive roles expected of them and developed a disability identity rooted in notions of power, respect and control. It is suggested that these alternative discourses provide an empowering rather than a disabling basis for community development and community arts practice and should be embraced by workers in these fields.

Carlson, L., & Murray, M.C. (Eds.). (2021). Defining the boundaries of disability: Critical perspectives. New York: Routledge. DOI: https://doi.org/10.4324/9780367855086.

This ground-breaking volume considers what it means to make claims of disability membership in view of the robust Disability Rights movement, the rich areas of academic inquiry into disability, increased philosophical attention to the nature and significance of disability, a vibrant disability culture and disability arts movement, and advances in biomedical science and technology.

By focusing on the statement, “We are all disabled”, the book explores the following questions: What are the philosophical, political, and practical implications of making this claim? What conceptions of disability underlie it? When, if ever, is this claim justified, and when or why might it be problematic or harmful? What are the implications of claiming “we are all disabled” amidst this global COVID-19 pandemic? These critical reflections on the boundaries of disability include perspectives from the humanities, social sciences, law, and the arts. In exploring the boundaries of disability, and the ways in which these lines are drawn theoretically, legally, medically, socially, and culturally, the authors in this volume challenge particular conceptions of disability, expand the meaning and significance of the term, and consider the implications of claiming disability as an identity.

It will be of interest to a broad audience, including disability scholars, advocates and activists, philosophers and historians of disability, moral theorists, clinicians, legal scholars, and artists.

Cavazos Quero, L., Iranzo Bartolomé, J., & Cho, J. (2021). Accessible visual artworks for blind and visually impaired people: Comparing a multimodal approach with tactile graphics. In J. Dong Cho (Ed.), Multi-Sensory Interaction for Blind and Visually Impaired People [Special Issue]. Electronics, 10, Art. 297. DOI: https://doi.org/10.3390/electronics10030297. 

Despite the use of tactile graphics and audio guides, blind and visually impaired people still face challenges to experience and understand visual artworks independently at art exhibitions. Art museums and other art places are increasingly exploring the use of interactive guides to make their collections more accessible. In this work, we describe our approach to an interactive multimodal guide prototype that uses audio and tactile modalities to improve the autonomous access to information and experience of visual artworks. The prototype is composed of a touch-sensitive 2.5D artwork relief model that can be freely explored by touch. Users can access localized verbal descriptions and audio by performing touch gestures on the surface while listening to themed background music along. We present the design requirements derived from a formative study realized with the help of eight blind and visually impaired participants, art museum and gallery staff, and artists. We extended the formative study by organizing two accessible art exhibitions. There, eighteen participants evaluated and compared multimodal and tactile graphic accessible exhibits. Results from a usability survey indicate that our multimodal approach is simple, easy to use, and improves confidence and independence when exploring visual artworks.

Chandler, E. (Ed.). (2019). Cripping the Arts in Canada [Special Issue]. Canadian Journal of Disability Studies, 8(1). DOI: https://doi.org/10.15353/cjds.v8i1.

Disability arts are political. Disability arts are vital to the disabled people’s movement for how they imagine and perpetuate both new understandings of disability, Deafhood, and madness/Mad-identity and create new worldly arrangements that can hold, centre, and even desire such understandings. Critically led by disabled, mad, and Deaf people, disability art is a burgeoning artistic practice in Canada that takes the experience of disability as a creative entry point.

Contents in this special issue include an introduction and both articles and creative works:

Chandler, E., Aubrecht, K., Ignagni, E., & Rice, C. (Eds.). (2021). Cripistemologies of Disability Arts and Culture: Reflections on the Cripping the Arts Symposium [Special Issue]. Studies in Social Justice, 15(2).

“The contributors to this special issue participated in the Cripping the Arts Symposium, a conference held in January 2019 at the Harbourfront Centre in Toronto, Canada, that brought together key stakeholders in disability arts, including artists, curators, academics, arts council officers, and other members of the disability community. Through panels, keynotes, workshops, artistic programming, as well as less formal ‘hallway conversations,’ communities came together to engage in dialogues about how Deaf and disability arts and activism changes how we experience art, culture, and digital transformation, as well as the ways our culture contributes to, if not  leads to, the achievements of disability rights and justice movements” (pp. 173-174).

This special issue features an introduction and the following articles:

Chandler, E., & Johnson, M. (2021). Reflections on crip imitations as cultural space-making. Journal of Literary & Cultural Disability Studies, 15(4), 383-399.

The article reflects on the complexities of deploying imitation as a performance theme within disability arts. The authors are animated by disability arts curator Amanda Cachia’s 2019 exhibition, Automatisme Ambulatoire: Hysteria, Imitation, and Performance, which showcased disabled and nondisabled artists exploring the cultural dynamics of imitation through the performing arts. The article begins by considering how imitation enacts proximal familiarity with difference by discussing disability simulation activities, actor training systems, and forms of cultural appropriation. A disability studies framework is employed to consider how artists engage imitation as an element of disability aesthetics. The analysis is developed in conversation with four examples of disability performance—Helen Dowling’s Breaker, Claire Cunningham’s tributary, Sins Invalid’s performance An Unshamed Claim to Beauty, and Jess Thom’s rendition of Samuel Beckett’s Not I. The article posits that by enacting imitation as a performance theme, disabled artists resist notions that imitation is reserved for bodies read as “neutral,” and attend to how imitation brings disability artists into a complex dynamic of political relationality.

Chandler, E., Johnson, M., Gold, B., Rice, C., & Bulmer, A. (2019). Cripistemologies in the city: ’Walking-together’ as sense-making. In S. Springgay & S. E. Truman (Eds.), Walking in/as Publics [Special Issue]. Journal of Public Pedagogies, 4, 82-96. DOI: https://doi.org/10.15209/jpp.1177.

In this article, we take up works of disability artists whose practices engage with the act of walking/traversing as a method and form of sense-making. Specifically, we take up two performances by blind theatre artist Alex Bulmer—May I Take Your Arm? (2018) and Blind Woman in Search of a Narrative (2018-2020) —in which walking, specifically ‘walking-together,’ is embedded as both a performative element and an integral mode of inquiry. We think about what Bulmer’s works, along with works by Carmen Papalia and Arseli Dokumaci, teach us about knowing and being known through an urban landscape, creating a ‘cripistemology’ (McRuer & Johnson, 2014) that builds on David Serlin’s (2006) notion of ‘disabling the flâneur.’ Throughout this arts-based inquiry, we suggest that Bulmer advances a practice of ‘cripping the flâneur’ (Campbell, 2010) as she demonstrates how we might come to know ourselves, our cities, our neighbours, and blindness through the epistemological vantage-point of blindness.

Collins, K., Jones, C.T., & Rice, C. (2022). Keeping Relaxed Performance vital: Affective pedagogy in the arts. Journal of Literary & Cultural Disability Studies 16(2), 179-196. DOI: https://doi.org/10.3828/jlcds.2022.14.

Relaxed Performance (RP) has emerged as an arts-based praxis implemented across sectors in response to disability and other justice-seeking communities’ desire to access the arts. Across Turtle Island (North America), RP is becoming the “gold standard” for accessible performance arts, as sector norms evolve to demand accessibility and inclusion, prompting a desire for RP training in higher education. The upswell of interest raises concerns that RP is at risk of becoming an increasingly sought-after pedagogical commodity whose vitality could be co-opted in the interests of standardization and universality. Taking up RP as a justice-driven arts intervention, the article argues for maintaining RP’s vitality in the face of access standardization. Drawing on RPs at three universities, the article describes the affective potential of non-standardized and crip theory-informed RP now and in the future.

Collins, A., Rentschler, R., Williams, K., & Azmat, F. (2022, March). Exploring barriers to social inclusion for disabled people: Perspectives from the performing arts. In O. B. Ayoko (Ed.), Ostracism, Bullying and Psychological Safety [Special Issue]. Journal of Management & Organization, 28(2), 308-328. DOI: https://doi.org/10.1017/jmo.2021.48.

Although the potential of arts to promote social inclusion is recognised, barriers to social inclusion for disabled people in the arts is under-researched. Based on 34 semi-structured interviews with disabled people and those without disability from four arts organisations in Australia, the paper identifies barriers for social inclusion for disabled people within performing arts across four dimensions: access; participation; representation and empowerment. Findings highlight barriers are societal, being created with little awareness of needs of disabled people, supporting the social model of disability. Findings have implications beyond social inclusion of disabled people within the arts, demonstrating how the arts can empower disabled people and enable them to access, participate and represent themselves and have a voice. Our framework conceptualises these four barriers for social inclusion for disabled people for management to change.

Conroy, C. (Ed.). (2009). On Disability: Creative Tensions in Applied Theatre [Special Issue]. Research in Drama Education: The Journal of Applied Theatre and Performance, 14(1).

“This journal has broken the habit of having special editions: there is nothing special about disability, only concerns that are urgent, vital and central to the area of applied theatre and drama. The work of disabled scholars and scholars of disability, disabled practitioners and makers of theatre with and for disabled people needs a creative space to articulate and explore the tensions between us all. The short pieces, provocations and practitioner statements interrupt the process of the research articles, and, without any claim to being representative, they serve to interject some of the distinctive perspectives and experiences of this vast and contested area. It seems to me that the work of disabled people has the potential to shift the paradigms of reception and production, politics and aesthetics, mainstream and margins, and so this themed edition is an attempt to foreground some of the patterns that produce this expectation” (p.

Cripps, J. H., Witcher, P. E., & Yousouf, H. (2022). Signed music and deaf musicians: A follow-up dialogue between Youssouf, Witcher, and Cripps [Forum]. Theatre Research in Canada, 43(2), 266-275. DOI: https://doi.org/10.3138/tric.43.2.f01.

This forum focuses on a journey in understanding and appreciating signed music as a performing art from deaf musicians. Signed music is an emerging inter-performative art form that includes lyrical and/or non-lyrical musical performances connecting to the culture of deaf people who communicate through signed languages. This forum follow-ups with the three signed music deaf musicians who participation in the Partition/Ensemble 2020 Conference, which was held in Montreal, Quebec, in the summer of 2020, and was organized by the Canadian Association for Theatre Research and the Société québécoise d’études théâtrales. Deaf musicians from around Canada convened in this plenary to discuss how they used their creativity, research, and scholarship to produce signed music works. The follow-up dialogue, in which Youssouf, Witcher, and Cripps participated, discusses their paths with new projects. They responded to three different questions: 1) What have we learned from the plenary? 2) Are there any new signed music pieces? If yes, expand on your piece; and 3) Are there any new works related to signed music (mentorship, research, etc.)? If yes, expand on your new work.

El-Sheikh, T. (Ed.) (2020). Entangled bodies: Art, identity and intercorporeality. Wilmington: Vernon Press.

Organ transplantation is a medical innovation that has offered the potential to enhance and save lives since the first successful procedure in the 1950s. Subsequent developments in scientific knowledge and advances in surgical techniques have allowed for more efficient and refined procurement, minimal surgical complications, and increased success rate. However, procedures such as organ transplantation raise questions about the nature of our relationship with our own bodies; about our embodiment and personal and corporeal identity.

This book is comprised of academic essays, personal reflections, and creative writing from researchers and artists involved in an ongoing collaborative art-science project about the experience and culture of heart transplantation. The writings and reflections included discuss embodiment, what it means to inhabit a body and define oneself in relation to it, including struggles with identity formation; set in both clinical and private spaces.

The uniqueness of this volume consists in the authors’ aim of connecting the specific experience of heart transplantation to the more widely shared experience of relating to the world and one another through the body’s physical, perceived, and imagined boundaries. Such boundaries and the commonly held beliefs in personal autonomy that are associated with them are a subject of ongoing philosophical and scientific debate. What’s more, the resources of art and culture, including popular culture, literature, historical and contemporary art, are extremely useful in revising our views of what it means for the body’s boundaries to be philosophically ‘leaky.’

Following the discussion initiated by contributor Margrit Shildrick, this book contributes to the field of inquiry of the phenomenon of embodiment and inter-corporeality, the growing body of literature emerging from collaborative art-science research projects, and the wider area of disability studies. This book will be of particular interest to those with personal, scholarly, and creative interests in the experience of transplantation, or illness in general.

Evans, R. (2022, Winter). Taut threads, spanning ambivalences: Lessons from disability arts practitioners about how to make sense of arts-based social change. FIELD Issue 20. La Jolla, CA: The Department of Visual Arts, University of California, San Diego.

In this essay, I unpack the idea of “good” and “bad” practice in the disability arts by focusing on two disability arts ensembles within the frame of arts-based social change. The bond between art and social change owes much of its ideological heritage to the community art movement, with Owen Kelly noting in his seminal Community, Art, and the State that community art should “be an active force for change.” [1] Originating in the 1960s, proponents of the community art movement seek to free art from the power systems of the art world, which often manifest in galleries and museums, theaters and concert halls. [2] Community artists have been successful in this respect. Today, art is in hospitals, community centers, care homes, prisons, parks, the street—art is “in community.” Similarly, art in these settings is not only made by professional artists—it is made by anyone, though often with guidance or encouragement from professional artists. [3] In other words, the art world’s spatial and relational boundaries have become strikingly porous in the past half-century or so.

Ferri, D., Leahy, A., Šubic, N., & Urzel, L. (2022, November). Implementing the right of people with disabilities to participate in cultural life across five European countries: Narratives and counternarratives. Journal of Human Rights Practice, 14(3), 859–878. DOI: https://doi.org/10.1093/jhuman/huac035.

The UN Convention on the Rights of Persons with Disabilities is a ground-breaking treaty that constitutes persons with disabilities as holders of rights and active members of society, and encompasses civil, political, economic, social and cultural rights. Article 30 of the Convention provides for the right of persons with disabilities to participate in cultural life. The importance of this provision lies in its detailed normative content, and also in that it sheds a light on the need for appropriate policies and practices that enhance cultural participation of persons with disabilities. By investigating the extent to which Article 30 of the Convention has been implemented across five European states (Austria, the Netherlands, Poland, Portugal, Sweden), this article identifies common narratives and counternarratives related to the realization of the right to participate in cultural life. It adopts a socio-legal approach and a blended methodology combining desk-based and empirical research. It contrasts official narratives, which highlight good practices and steps taken to improve access to culture, with counternarratives that reveal a fragmentary approach to cultural participation of persons with disabilities, persisting barriers, limited recognition of artists with disabilities, and the perpetuation of stigma and stereotypes.

Graeme-Cook, A., Graeme-Cook, C., Waitt, G., & Harada, T. (2023). Doing disability activism through the embodied experiences of creative practice: participating in a community art exhibition. Cultural Geographies. DOI: https://doi.org/10.1177/14744740231201407.

Creative practice is frequently being deployed in research by cultural geographers. This article explores one such deployment, centering on a participatory community art exhibition titled ‘Wheelability’. The exhibition was organized by non-disabled geographers for people who use powered mobility devices in the Northern Rivers region of New South Wales, Australia. The article illustrates the distinctive contribution art can make to disability mobility justice. It uses the personal stories and mobile creative expressions of one co-researcher and their carer to explore how engaging in creative activities provides opportunities to understand the emotional aspects of everyday mobility challenges and what emotions can do. Thinking through the emotional geographies of a mobile form of creative practice allows us to illustrate how dominant social norms are confirmed, ruptured, and reconfigured by the co-researcher. In conclusion, we discuss the implications of creative practices for conducting geographical research that promotes justice for individuals with mobility disabilities.

Green, K. R. (2022). Dis/ability arts and systemic innovation in the UK and Sweden. Journal of Social Entrepreneurship, 13(3), 366-389.  DOI: https://doi.org/10.1080/19420676.2020.1788122.

This paper explores the normative and epistemic effects of dis/ability arts organisations in the UK and Sweden, when theorised as systemic innovations. Using an aesthetic philosophy of kynicism, this paper identifies disruptive potential in three case-study organisations within the settings of health, social care, and the arts. Data from interviews and/or presentations with managers from Moomsteatern (SE), Teater Interakt (SE), and Breathe Magic (UK) is analysed within a ‘social model’ of dis/ability, and finds the existing discourse of innovation inadequate. The resulting discussion identifies validations of the speech, expertise and bodily autonomy of persons of dis/abilities within hybrid organisational settings.

Hadley, B. (2022). A ‘Universal Design’ for audiences with disabilities? In M. Reason, L. Conner, K. Johanson, & B. Walmsley (Eds.), Routledge Companion to Audiences and the Performing Arts. New York: Routledge. DOI: https://doi.org/10.4324/9781003033226-14.

Understanding of how to create inclusive performance experiences for spectators with disabilities remains nascent in research, policy and practice. In this chapter, I survey the state of knowledge in this field – or, as it turns out, fields, given that specialist knowledge of sign language interpretation for d/Deaf spectators, audio description for blind spectators and relaxed performance for neurodiverse spectators has developed separately, without intersection. I then investigate recent efforts to create inclusive aesthetics that incorporate accessibility features into performance work, as an integral part of the aesthetic, rather than as interpretations, captions or descriptions alongside the work. I examine why this ‘Universal Design’ approach has been embraced with enthusiasm, both by disabled producers and spectators and by non-disabled producers and spectators. I consider the benefits and the potential drawbacks of a ‘Universal Design’ approach – if, paradoxically, the aestheticisation of access features prevents them from fulfilling their conventional access purpose and/or makes producers think conventional access features are no longer required now that a ‘Universal Design’ ostensibly meets the needs of all spectators. Consolidating to date disconnected accounts into a coherent analysis of current approaches to practice for the first time, I identify key recommendations – in particular, engaging disabled artists and allies who have lived experience of disability aesthetics and culture before and during as well as after a performance’s creation – to support future research, policy and practice in the field.

Hadley, B., & McDonald, D. (Eds.). (2018). The Routledge Handbook of Disability Arts, Culture, and Media. London: Routledge. DOI: https://doi.org/10.4324/9781351254687.

In the last 30 years, a distinctive intersection between disability studies – including disability rights advocacy, disability rights activism, and disability law – and disability arts, culture, and media studies has developed. The two fields have worked in tandem to offer critique of representations of disability in dominant cultural systems, institutions, discourses, and architecture, and develop provocative new representations of what it means to be disabled.

Divided into 5 sections:

  • Disability, Identity, and Representation
  • Inclusion, Wellbeing, and Whole-of-life Experience
  • Access, Artistry, and Audiences
  • Practices, Politics and the Public Sphere
  • Activism, Adaptation, and Alternative Futures

This handbook brings disability arts, disability culture, and disability media studies – traditionally treated separately in publications in the field to date – together for the first time.

It provides scholars, graduate students, upper level undergraduate students, and others interested in the disability rights agenda with a broad-based, practical and accessible introduction to key debates in the field of disability art, culture, and media studies. An internationally recognised selection of authors from around the world come together to articulate the theories, issues, interests, and practices that have come to define the field. Most critically, this book includes commentaries that forecast the pressing present and future concerns for the field as scholars, advocates, activists, and artists work to make a more inclusive society a reality.

Hadley, B., Paterson, E., & Little, M. (2022). Quick trust and slow time: Relational innovations in disability performing arts practice. International Journal of Disability and Social Justice, 2(1), 74-94. DOI: https://doi.org/10.13169/intljofdissocjus.2.1.0074.

In the last decade, the field of Disability Arts has been recognised as a powerful source of aesthetic innovation. Yinka Shonibare has described it as ‘the last remaining avant-garde movement’ (Bragg, 2007), where artists with lived experience of disability produce new combinations of form, content and politics, which engage spectators in provocative reflections on the way we relate to each other in the public sphere. Despite a range of policies, plans, protocols and funding programmes to support disabled artists and collaborations between mainstream producers and disabled artists, the statistics – at least in our context in Australia – suggest most disability art still occurs outside and alongside an industry that struggles to include these artists. In this article, we draw upon findings from a series of workshops with disabled artists around Australia, conducted as part of the ARC funded Disability in the Performing Arts in Australia: Beyond The Social Model project – known colloquially to its collaborators and participants as ‘The Last Avant Garde’ project (https://lastavantgarde.com.au) – to propose a new approach. We find that while provision of logistical access (ramps, hearing loops, interpreters) and ideological access (stories, characters, discourse and language) is critical, so is methodological access, which embodies disability culture in training, rehearsal and production processes. Disabled artists use crip culture, along with relational space and time to negotiate what happens in disability arts and culture production practices and work through desire, fear, vulnerability and reciprocity to rapidly establish trusting collaborations. It is inclusion of disability culture relationships and concepts, as much as ramps and inclusive language, that makes a practice feel safe for disabled artists – and this, we argue, is what the mainstream sector has to learn and what the disability arts sector has to teach about improving the inclusivity of the creative industries.

Hadley, B., Rieger, J., Ellis, K., & Paterson, E. (2022). Cultural safety as a foundation for allyship in disability arts. Disability & Society. DOI: https://doi.org/10.1080/09687599.2022.2067468.

The practice of allies – the non-disabled producers, directors, curators and facilitators who support the work of disabled arts and media makers – has not been subject to dedicated analysis. In this article, we argue that cultural safety, respect, and trust is a precursor to good allyship in the creative industries. We outline factors that influence feelings of safety or non-safety for disabled arts and media makers, and the way the legacy of the medical model makes it difficult for many arts and media workers to appreciate and enact enablers of safety as part of an allyship relationship. Education through reports and training sessions is not enough to ensure would be arts allies can establish cultural safety. What is required, we argue, is direct experience of how disabled artists and long-term allies enact cultural safety through the disability space, time and relational concepts central to disability arts, culture, and aesthetics.

Hammel, A., & Hourigan, R. (2022). Poverty, race, disability, and intersectionality and participation in the arts: Needed policy changes for the future. Arts Education Policy Review. DOI: https://doi.org/10.1080/10632913.2022.205973.

According to the National Center for Educational Statistics, in 2016 about 1 in 5 children in the United Stated lives in poverty (19%). Students in our music classrooms and ensembles do not begin life from the same starting line. They come from homes and communities that are vastly different. The intersections of poverty, disability, racial inequity, disability, and trauma are inextricably linked in their daily lives. This article will examine these issues and offer suggestions for future policy and practice decisions in the arts.

Holfeuer, K. (2022). Access intimacy and disability aesthetics in I Wanna Be With You Everywhere. Women & Performance. DOI: https://doi.org/10.1080/0740770X.2022.2078274. 

This review examines the aesthetic, social, and political force of access intimacy as it emerges in three performances that took place during the 2019 multidisciplinary festival of disability performance, I Wanna Be With You Everywhere. By examining the access aesthetics present in Kayla Hamilton’s Nearly Sighted/unearthing the dark, Jerron Herman’s Relative, and performances of Protactile poetry by John Lee Clark and company, I argue that these performances investigate the ways in which access aesthetics fosters access intimacy by creating ways to dwell in disability without centering disability-as-identity.

Jerreat-Poole, A., & Brophy, S. (2020). Encounters with Kusama: disability, feminism, and the mediated Mad art of #InfiniteKusama. In J. J. Zhao (Ed.), Global Queer Fandoms of Asian Media and Celebrities [Special Issue]. Feminist Media Studies, 21(6), 905-922. DOI: https://doi.org/10.1080/14680777.2020.1770313.

The 2018 exhibition “Infinity Mirrors” at the Art Gallery of Ontario (AGO) in Toronto, and the accompanying social media phenomenon #InfiniteKusama, harnessed the myth of the “mad genius” who “overcame” hardship in its celebration of the life and work of artist Yayoi Kusama, yet veered away from a nuanced engagement with disability, madness/mental illness, and access. Desiring a crip version of the artist and psychiatric user/survivor, we take up Marta Zarzycka and Domitilla Olivieri’s call to mobilize the feminist potential of affective encounters in digital spaces, generating an analysis of our mediated interactions with Kusama’s persona and artwork at the cultural sites of the art gallery, Instagram, and Twitter. While the physical and digital extensions of the exhibition tried to elicit participation in normative and normalizing ways, critically crip moments of productive tension ruptured the smooth lines of power and ideology in the institution. Through a series of personal reflections we showcase the potential for “affective encounters” between bodies in spaces to disrupt ableist and sanist norms.

Jones, D. R. (2022). Reclaiming disabled creativity: How cultural models make legible the creativity of people with disabilities. In Thematic Section: Creativity, Music, and Poetry. Culture & Philosophy, 28(4), 491-505. DOI: https://doi.org/10.1177/1354067X211066816.

The field of creativity studies underrepresents—even excludes—creators who have disabilities. The underrepresentation partly reflects an approach that pathologizes disability. Disability as a pathology or marker of ineligibility makes the contributions of people with disabilities invisible or illegible to creativity research. However, disability operates as a marker of membership in a larger disability culture. Considering disability and creativity as cultural phenomena locates a means for including disabled creators in creativity studies. Cultural models describe creativity in terms of groups sharing values, experiences, and resources. People with disabilities participate in subcultures (e.g., deaf communities) and/or larger cultures (i.e., disability culture). Disability cultures encapsulate shared experiences and values as well as resources. In the following article, I pair three propositions from cultural creativity models with evidence from creators with disabilities to demonstrate that (a) members of disability culture experience the world in ways that generate creative expression, (b) encountering a world designed for abled bodies incites the creativity of disabled people, and (c) disabled and abled people collaboratively create. However, not all methodological approaches effectively include creators with disabilities. Qualitative approaches suit best when the researcher practices reflexivity and allows creators with disabilities the right to manage their own representation within the project.

Jones, C. T., Collins, K., & Rice, C. (2022). Staging accessibility: Collective stories of Relaxed Performance. Research in Drama Education: The Journal of Applied Theatre and Performance, 27(4), 490-506. DOI: https://doi.org/10.1080/13569783.2022.2029388.

On the premise that performances and writing can be staged, and that no staging is ever innocent, we tell two unresolved, wonder-oriented phenomenological stories of Relaxed Performances (RP) that reveal ‘affective trouble’: the delivery of a ‘cripped’ fashion show at a university and a church-based ‘relaxed’ choir performance. We compose these narratives from the perspectives of eight participants in collaboration across three universities in Ontario, Canada. These RP moments reveal insights into disability arts as an emotive challenge to so-called proper comportment and introduce new, politicised elements of wonder about what it means to strive for accessible performance.

Jones, C. T., Johner, R., Lozhkina, A., & Walliser, R. (2022). Voice, communication technology, disability, and art: An interdisciplinary scoping review and reflection. Disability & Society. DOI: https://doi.org/10.1080/09687599.2022.2114883.

This article describes findings of a transdisciplinary scoping literature review process that acknowledges assistive technology-users’ contributions to disability arts by clarifying the key concepts of ‘voice’, ‘communication technology’, ‘disability’, and ‘art’. Driven by the early stages of a participatory research project involving young disabled artists, the literature search was carried out between April 2019 and August 2019. The studies selected for this review (n = 14) were analyzed through a thematic narrative approach, which revealed seven overlapping themes that reflect the inseparability and transdisciplinarity of the key concepts. Later consultation with young disabled artists based on this literature review prompted changes in our research process. We conclude that nuanced research related to voice, communication technology, disability, and art is better situated in the radical expression of artists themselves, rather than in formalized research labs and codified studies such as that which housed this inquiry.

Jones, C. T., Weber, J., Atwal, A., & Pridmore, H. (2023). Dinner table experience in the flyover provinces: A bricolage of rural deaf and disabled artistry in Saskatchewan. In N. Changfoot, E. Chandler, & C. Rice (Eds.), Rethinking Artful Politics: Bodies of Difference Remaking Body Worlds [Special Issue]. Social Sciences, 12(3), 125. DOI: https://doi.org/10.3390/socsci12030125.

“Dinner table experience” describes the uniquely crip affect evoked by deaf and disabled people’s childhood memories of sitting at the dinner table, witnessing conversations unfolding around them, but without them. Drawing on 11 prairie-based deaf and/or disabled artists’ dinner table experiences, four researcher-artivist authors map a critical bricolage of prairie-based deaf and disabled art from the viewpoint of a metaphorical dinner table set up beneath the wide-skyed “flyover province” of Saskatchewan. Drawing on a non-linear, associative-thinking-based timespan that begins with Tracy Latimer’s murder and includes a contemporary telethon, this article charts the settler colonial logics of normalcy and struggles over keeping up with urban counterparts that make prairie-based deaf and disability arts unique. In upholding an affirmative, becoming-to-know prairie-based crip art and cultural ethos using place-based orientations, the authors point to the political possibilities of artmaking and (re)worlding in the space and place of the overlooked.Disability

Kafai, S., & Ramirez, J. (2023). Disability Justice, Community, and Performance. In J. C. Davidson & A. Jones (Eds.), A Companion to Contemporary Art in a Global Framework [ Wiley Blackwell Companions to Art History]. Hoboken, NJ: Wiley-Blackwell. DOI: https://doi.org/10.1002/9781119841814.ch23.

As disabled, Mad, queer of color scholars, Shayda Kafai and Jennette Ramirez arrive to this discussion of disability performance art with activist and liberatory aims. We look back to recent events where the state and public sphere sought to erase us through Ugly Laws, which sanctioned police violence and limited the movement of disabled bodies in public spaces. To redirect the ableist stare, to interrogate the power dynamics of public space, we offer the activism of Sins Invalid, a San Francisco-based disability justice performance project, as balm, as a strategy led by disabled, queer, and transgender of color artist-activists. Throughout our journey exploring how Sins Invalid intentionally politicizes performance, community teaches us disability justice principles have the capacity to resist normative and ableist expressions of embodiment, space, and time. In this article, we explore how crip and Mad bodies commandeer the stage to create spaces of agency and crip beauty.

Kaya, G., Mathieu, C., & Sépulchre, M. (2022, May-August). Disability and arts education: From unequal participation to opportunities for innovation. In A. L. Tota & A. De Feo (Eds.), Arting Education: Reinventing Citizens of the Future [Feature Issue]. Scuola democratica Learning for Democracy, 2(2022), 261-278. DOI: https://DOI.org/10.12828/104553.

To promote human flourishing throughout society, opportunities for arts participation must encompass all citizens. A primary means to promote this is arts education and activities for schoolchildren. Equal opportunities for participation are currently not enjoyed by students with disabilities. In a population-based and cross-sectional study carried out on a 2016 public-health survey including 27,395 students with and without disabilities in the Swedish region of Skåne, it is found that all categories of students with disabilities experience some degree of diminished participation across six different arts activities. Students with ADHD/ADD and dyslexia suffer consistent diminished participation across all six activities, while students with other disabilities are ‘compensated’ for lesser participation in some activities by overrepresentation in other activities. This suggest that all students with disabilities are subject to external perspectives about what is appropriate for them, based on perceptions about their impairments and, possibly, combined with gender. Finally, it is argued that disability invites us to broaden our views of who can engage in various art forms, under which premises and how arts can be taught. This opens ‘opportunities for innovation’ in arts education drawing on the basic impulse of the arts: to continuously look beyond boundaries and facilitate emancipatory expression.

Kelly, C., & Orsini, M. (Eds.). (2016). Mobilizing Metaphor: Art, Culture, and Disability Activism in Canada [Disability Culture and Politics]. University of British Columbia Press. DOI: https://doi.org/10.59962/9780774832816

Mobilizing Metaphor illustrates how radical and unconventional forms of activism, including art, are reshaping the vibrant tradition of disability activism in Canada, challenging perceptions of disability and the politics that surround it.

Mobilizing Metaphor illustrates how radical and unconventional forms of activism, including art, are reshaping the rich and vibrant tradition of disability mobilization in Canada – and in the process, challenging perceptions of disability and the politics that surround it.

Until now, research on Canadian disability activism has focused on legal and policy spheres and overlooked how disability activism is as varied as the population it represents. Mobilizing Metaphor combines contributions by artists, activists, and academics (including an insightful concluding chapter by renowned disability scholar Tanya Titchkoksy) with rich illustrations and photographs to reveal how disability art is distinctive as both art and social action.

As the contributors sketch the shifting contours of disability politics in Canada and show how disability oppression is not isolated from other prejudices, they challenge us to re-examine how we enact social and political change.

Kuppers, P. (Ed.). (2021). Disability arts and culture:Methods and approaches. Bristol, UK: Intellect.

This collection offers insight into different study approaches to disability art and culture practices, and asks: what does it mean to approach disability-focused cultural production and consumption as generative sites of meaning-making? International scholars and practitioners use ethnographic and participatory action research approaches; textual and discourse analysis; as well as other methods to discover how disability figures into our contemporary world(s).

Chapters within the collection explore, amongst other topics, deaf theatre productions, representations of disability on-screen, community engagement projects and disabled bodies in dance. Disability Arts and Culture provides a comprehensive overview and a range of case studies benefitting both the practitioner and scholar.

Leahy, A., & Ferri, D. (2022). Barriers and facilitators to cultural participation by people with disabilities: A narrative literature review. Scandinavian Journal of Disability Research, 24(1), 68–81. DOI: http://doi.org/10.16993/sjdr.863.

Article 30 of the UN Convention on the rights of Persons with Disabilities obliges States Parties to ensure accessibility of cultural goods, services and heritage and to adopt measures enabling persons with disabilities to utilize their artistic potential. However, people with disabilities experience barriers to engagement in cultural life as audiences and as creators. This article presents a narrative literature review that classifies barriers and facilitators to cultural participation identified in previous studies. It does so under five headings: (1) lack of effective/adequate legislation, policies and legal standards; (2) lack of funding and/or of adequate services; (3) negative attitudes; (4) lack of accessibility; (5) lack of consultation with, and involvement of, persons with disabilities in cultural organisations. This provides a novel contribution to the state of art by synthesising findings from different yet related fields. It forms the basis for future multi-method research addressing barriers to participation in culture.

Levy, S., & Young, H. (2020). Arts, disability and crip theory: Temporal re-imagining in social care for people with profound and multiple learning disabilities. In K. Ljuslinder, L. Vikström & K. Ellis (Eds.), Cripping Time – Understanding the Life Course through the Lens of Ableism [Special Collection]. Scandinavian Journal of Disability Research, 22(1), 68–79. DOI: https://doi.org/10.16993/sjdr.620.

People with profound and multiple learning disabilities (PMLD) are some of the most marginalised in society and are perceived to lack agency. This paper contests such a narrative, presenting findings from an innovative project in Scotland, UK, exploring the impact of artists working collaboratively with people with PMLD and their formal carers. Art is conceived as a social practice, a process, an embodied aesthetic and sensory experience that takes place between individuals. Theoretically, the paper adopts an original approach, combining crip theory, the capability approach and social pedagogy to re-imagine and re-position people with PMLD. The year-long qualitative study used data from reflective diaries (n = 111) and semi-structured interviews (n = 9) with artists, carers and management of a day centre. An Interpretative Phenomenological Analysis of these shared experiences was used. The results reveal an unsettling of prevailing norms and creative ways of doing and experiencing social care that is relational.

Martins, C., & Ferreira, C. (2022). Accessibility as far as the eye can see: An accessible film festival. In M. Pilar Castillo Bernal & M. Estévez Grossi (Eds.), Translation, Mediation and Accessibility for Linguistic Minorities [Arbeiten zur Theorie und Praxis des Übersetzens und Dolmetschens Band Vol. 128] (pp. 69-83). Berlin: Herstellung durch Frank & Timme GmbH.

“Multilingualism and linguistic diversity are two defining concepts of the 21st century and they stem from the previous century’s struggles for equality, accessibility and inclusion. For cinema, the fight was to make films as inclusive as possible, by means of different mediation strategies, such as audiodescription (AD) for the visually-impaired, subtitling for the deaf and hard-of-hearing (SDH), as well as sign language interpreting (SLI).

In view of this, the present paper has a two-fold aim: we wish to identify and describe the film festivals that are concerned with accessibility to persons with disabilities, either as a topic or as an approach to mediation, while, at the same time, we intend to report on the Portuguese Accessible Film Festival, whose first edition was held in 2019.

In terms of structure, our paper is divided into three parts: the first where we discuss the notion of linguistic diversity and, particularly, the role of Audiovisual Translation (AVT) in cinema and the concept of minority groups, specifically those with impairments; the second focusing on the presence of accessibility and disability in film festivals around the world, which resulted from a documental research; and the last reporting and describing the two editions of our Accessible Film Festival (AFF), so far a unique experience in Portugal. At the end of the paper, we intend to reach some tentative conclusions” (p. 69).

Maxwell, H., Darcy, S., Grabowski, S., & Onyx, J. (2022, November). Disability and the arts: Inclusive practice for health and wellbeing. In H. Maxwell, R. McGrath, J. Young, & N. Peel (Eds.), Exploring the Leisure – Health Nexus: Pushing Global Boundaries (pp. 33-51). CABI Open Access. DOI: https://doi.org/10.1079/9781789248166.0002.

“In this chapter we demonstrate how the inclusion of PWD in the arts produces individual, social and health benefits” (p. 33).

McAskill, A., & Watkin, J. (Eds.). (2022, Spring). Intersections of Allyship, Action and Artistic Access [Special Issue]. Canadian Theatre Review, 190.

“Our goal for this issue, which grew out of our three-year interdependent co-convening of the Canadian Association for Theatre Research’s Disability, Performance, and Pedagogies Working Group, is to centre Deaf and Disabled people’s experiences of Canadian theatre and performance” (p. 5)

This issue features an editorial and the following articles:

McRuer, R. (2023). Disability art on lockdown: Access and intersectionality in a pandemic. In J. C. Nash & S. Pinto (Eds.), The Routledge Companion to Intersectionalities (pp. 357-366). London: Routledge. DOI: http://dx.doi.org/10.4324/b23279-38.

Disability justice is a concept developed by artists and activists who are disabled and queer, Black, Indigenous, people of color. This chapter presents a reviews of Nunez’s pre-pandemic work followed by his reinvention of that work on lockdown. Nunez’s process as an artist entailed literally crossing borders and arriving in New York and discovering disability community. Nunez’s play with and within a range of motions, and his valuing of an expansive understanding of disabled temporalities suggests for another crip mode, crip pacing, that has been legible in his work and others’ on lockdown.

Mondelli, M,. & Justice, J. (2023). Aesthetic In-Access: Notes from a CripTech Metaverse Lab. Leonardo 2023; DOI: https://doi.org/10.1162/leon_a_02491.

“Metaverse” technologies, such as spatial audio, virtual reality (VR), and augmented reality (AR), present new possibilities for disabled artists. To explore how artists use metaverse technologies – as well as the frictions that inhibit access – the authors describe the events of “CripTech Metaverse Lab,” which invited a cohort of disabled artists for a three-day workshop featuring metaverse experiences and a speculative design lab. Observing how participants creatively navigated these encounters, we introduce “aesthetic in-access” as a shared praxis developed by disabled users that transforms barriers to access into artistic expression. In doing so, we outline a metaverse future that centers disabled expression and joy.

Mühlemann, N., Widmer, C., & Schmidt, Y. (2023). Cripping hybrid futures. In M. Felton-Dansky, S. Ilter, R. Mosse, N. Tecklenburg & C. Gil Vrolijk (Eds.), Hybrid Futures: Theatre and Performance in the Post/Pandemic Anthropocene [Special Issue]. International Journal of Performance Arts and Digital Media, 19(1), 12–26. DOI: https://doi.org/10.1080/14794713.2022.2162279.

In this collaboratively written article, we argue that disabled performers have long since questioned notions about physicality, subjectivity, temporality and spectatorship on stage that are currently being revisited in the debate on ‘hybrid’ theatre practices during the pandemic. Disability performances, as well as hybrid theatre formats, which are now booming due to the lockdown experience, provoke discussions and discursive negotiations about what theatre is, should be and for whom, and explore boundaries of the art form. Based on these arguments, we will examine the concept of hybridity, in order to critically explore the debate on hybrid theatre in relation to disability performance practices, using the examples of the internationally recognised performing artists Neil Marcus and Sins Invalid, and challenge notions of sustainability within that discourse. We endby asking what demands a hybrid future would need to meet to accommodate the diverse realities of non-normative bodyminds.

Myers, C. (2019). On the complexity of cripping the arts. Canadian Art, 12.

“In the wake of Bill C-81, ‘an act to ensure a barrier free Canada,’ and the Canada Council’s accessibility and equity research initiatives, the attention to deaf, disability and mad arts is growing. The aim, now, is for organizations to realize commitments to accessibility by developing methods of inclusion that are as creative as their programming. Rather than simply accommodating these artists and audiences, organizations have the opportunity to “crip”–that is to disrupt–the way they think about language, time, representation and even budgeting. What are the futures of these bodies and what can we learn from them?”

National Endowment for the Arts. (2016). Careers in the Arts for People with Disabilities: National Online Dialogue Brief. Washington, DC: Author.

“What ideas do you have to increase the career preparation and employment for people with disabilities in the arts?” This question was posed to participants in an online discussion hosted by the NEA in partnership with the National Arts and Disability Center (NADC) and the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) in June 2016. Using ODEP’s ePolicyWorks online dialogue platform, this conversation engaged 390 participants representing artists, arts administrators, arts organizations, arts educators, arts employers, and disability organizations, who shared feedback from their own experiences and offered ideas about how to improve employment outcomes for people with disabilities in the arts. This brief provides a summary of these ideas and recommendations for the field. A final report can also be found on the ePolicyWorks website.

National Endowment for the Arts. (n.d.). Careers in the Arts Toolkit. Washington, DC: Author.

“Every day, people with disabilities add significant value and talent across the spectrum of arts careers. They are performers, visual artists, teaching artists, cultural workers, administrators, and more. Yet, historically, people with disabilities have not had access to the same career opportunities as people without disabilities. Reasons for this range from inaccessible facilities to disability benefit earning limitations to misconceptions about the skills and talents of people with disabilities. Through a variety of initiatives, the National Endowment for the Arts has worked to bridge this inequity, for the benefit of not only people with disabilities, but also America’s arts institutions and their patrons.

In this spirit, the Careers in the Arts Toolkit empowers individuals with disabilities to explore arts careers and access resources to support their success. It also educates arts employers, educators, and grantmakers about the critical role they play in fostering disability inclusion and the resources available to help them successfully do so.”

On the Move. (2021, November). Time to Act: How lack of knowledge in the cultural sector creates barriers for disabled artists and audiences. The British Council, On the Move, and Europe Beyond Access, with support from the Creative Europe Programme of the European Union.

Spanning 42 countries, Time To Act provides the first transnational evidence that lack of knowledge in the mainstream cultural sector is a key barrier preventing disabled artists and arts professionals participating equally in European culture.

Onyx, J., Darcy, S., Grabowski, S., Green, J., & Maxwell, H. (2018). Researching the social impact of arts and disability: Applying a new empirical tool and method. Voluntas, 29, 574–589. DOI: https://doi.org/10.1007/s11266-018-9968-z.

This paper has a twofold focus: to establish a method of assessing the potential social impact of arts and disability projects and to apply this method to ten such projects. It does so by using a newly developed ‘ripple’ model that conceptualises social impact in terms of the development of active citizenship on the part of all participants over time. The model identifies ten factors (programme activity, welcoming, belonging, programme social values, individual social values, programme networks, individual networks, skills and creativity, programme wider social impact, and individual wider social impact) which evolve through four progressive stages. The original model is empirically adapted for application to arts and disability projects. Qualitative data were collected in the form of interviews, surveys and media reports across ten case studies, each representing a major arts and disability project offering a professional outcome for an external audience. The qualitative data were coded to provide a simple scoring tool for each case. The results support the application of the model in this context. Furthermore, findings indicate three critical conditions which enable projects to generate considerable positive social impact beyond the individual; ensemble in nature; project embeddedness; and networks and partnerships.

Pasquet, G. (Ed.). (2023/4). Access the scene: Challenges of the professionalization of artists with disabilities. Sociograph Special Issue No. 16.

This issue offers an assessment of the professionalization and inclusion of artists with psychological or mental disabilities in the field of performing arts, and presents new perspectives that are being developed in France and abroad.

What about the places and devices that allow their inclusion in this field today? What are the effects produced by the meeting between the disability sector and the field of art? What does the comparison with equivalent experiences in other countries teach us? What are the new challenges that this professionalization will involve in the coming years given the transformations in the artistic field, the ongoing restructuring in the field of social work and disability, and the evolution of public policies?

Actresses, directors, heads of training and professionalization organizations, support teams, researchers from different disciplines in the human and social sciences, photographers, etc. present their perspective and contribute to documenting practices current activities carried out within the medico-social and artistic fields.

Content of this special issue includes:
  • Creations for creativity
  • Professional artistic practices of artists with disabilities and social work: assessment and renewal of perspectives
  • Rehearsal Snapshots
  • Artists at work – Testimonials from professional actresses
  • Improvisation as a sensitive experience
  • Met
  • Words from support staff – What educational support for actors “with disabilities”?
  • A look back at ten years of artistic experimentation: La Bulle Bleue de Montpellier
  • Unfolding Disability Futures: Enacting care and transforming professionalization through disability art practices
  • Publicizing disability
  • How to be recognized in the field of performing arts? Positioning discourse and institutional support for artists with disabilities
  • Professionalization of artists with disabilities in the field of live performance: some reflections following meetings of European companies
  • Excerpts from the creative diary of Marion Coutarel, director
  • Rehearsal Snapshots
  • Artist above all
  • Continuing training for ESAT actors: an unfinished inclusive process
  • Artistic practices and disability. ESATs: enabling environments, under what conditions
  • Aesthetics and ethics: creative madness
  • The aesthetic question of the recognition of artist-actors with disabilities

Penketh, C., & Adams, J. (Eds). (2019). The Biopolitics of Art Education [Special Issue]. Journal of Literary & Cultural Disability Studies, 13(3). DOI: https://doi.org/10.3828/jlcds.2019.19.

“This issue of the Journal of Literary & Cultural Disability Studies offers a timely opportunity for an extended discussion of current practices at the intersection of art education and disability studies, a discussion that has the potential to further practice and theory in both domains. Art education has an obvious role in the development of our understanding of culture and is like all forms of education, shaped by explicit as well as implicit processes of cultural production. Literary and cultural disability studies have considerable potential for enabling us to understand the relationships among disability culture, and society at a deep ideological level that impacts on art education at a curricular level and into arts practice. The articles in this special issue further the argument that art educators are particularly well placed to respond in creative and innovative ways to potentially restrictive normative practices and rigid assessment regimes at the heart of disabling school practices. Emerging in these articles are highly reflective insights from disabled and nondisabled art educators working in compulsory and post-compulsory sectors and who acknowledge disability as a creative source” (p. 247).

The issue includes an introduction and the following articles:

Pickard, B. (2021, October). Undergraduate creative arts students’ perceptions and attitudes toward disability: Advancing a critical disability studies informed curriculum. Art, Design & Communication in Higher Education, 20(2), 141-161. DOI: https://doi.org/10.1386/adch_00036_1.

This study reports on the unanticipated findings of a small-scale, evaluative research project. Further to a pilot iteration, a cohort of undergraduate art students engaged with an immersive, inclusive arts curriculum informed by critical disability studies. Students’ perceptions and attitudes about disability were recorded at the outset and conclusion of the pedagogical project, through a qualitative questionnaire. Thematic analysis was employed to surface patterns in the cohort’s responses at both points in their learning journey. While the findings evidenced the anticipated shift from individualized perspectives about disability to an increasingly social, interactional perspective, the full extent of the medicalized gaze and internalized ableism at the outset of the study was unanticipated. This realization has been influential in developing the pedagogical approach and the framing of the content taught, and has exemplified both the potential and the need to learn about disability, disablement and diversity through art education.

The author reflects on hir coming to identify as physically and cognitively disabled, making performance work concerning these identities and communities, the influence of Sins Invalid’s projects, challenges of securing arts funding while immigrating to Canada, and the activisms of developing disability-centred arts in smaller cities, of bridging ‘professional’ and ‘community arts,’ of increased training for disabled theatremakers onstage and offstage, and of amplifying improvements in working conditions industry-wide. Sie also discusses challenging paradigms of disabled relationships to desire and consent, of simplified narratives and conventional modes of staging our theatre, and hir goals for prioritizing work co-developed in local communities that experiments and explores.

Pinney, F. (2022, December). Neurodivergent-affirming therapeutic arts practice. Journal of Creative Arts Therapies, 17(2).

As a neurodivergent therapeutic arts practitioner, I explore the impact of double empathy in creating dissonance within/when companioning people I work with. This leads me to accepting my bias around working with my own neurokin. Reflections on a philosophically collaborative approach explore three neurodivergent-affirming therapeutic art practice sessions that include education on Autistic culture and norms. Images and descriptions offer insight into how art therapy supports the understanding, acceptance and affirming of neurodivergent identity within this relationship. I then reflect on the positive impact on self-expression and social engagement when the double empathy problem and ableism are overcome.

Rice, C., Bailey, K. A., & Cook, K. (2021). Mobilizing interference as methodology and metaphor in disability arts inquiry. Qualitative Inquiry, 28(3-4), 287-299. DOI: https://doi.org/10.1177/10778004211046249.

This article interrogates the limits and possibilities of interference as methodology and metaphor in video-based research aiming to disrupt ableist understandings of disability that create barriers to health care. We explore the overlapping terrain of diffractive and interference methodologies, teasing apart the metaphorical-material uses and implications of interference for video-makers in our project. Using the digital/multimedia stories created and an interview as research artifacts, we illuminate how interference manifested in disabled makers’ lives, how interference operated through the research apparatus, and how the videos continue to hold agency through their durability in the virtual realm. Drawing on feminist post-philosophies of matter (Barad) and use (Ahmed), we argue that the videos disrupt the gaze that fetishizes disabled bodies, thereby interfering with cultural-clinical processes that abnormalize disability. The research apparatus interfered with makers’ subjectivities yet also brought people together to generate something new—a community that creates culture and contests its positioning as marginal.

Rice, C., Dion, S. D., & Chandler, E. (2021, Spring). Decolonizing disability through activist art. Disability Studies Quarterly, 41(2). DOI: https://doi.org/10.18061/dsq.v41i2.7130.

This paper mobilizes activist art at the intersections of disability, non-normativity, and Indigeneity to think through ways of decolonizing and indigenizing understandings of disability. We present and analyze artwork produced by Vanessa Dion Fletcher, the first Indigenous disability-identified Artist-in-Residence for Bodies in Translation (BIT), a research project that uses a decolonized, cripped lens to cultivate disabled, D/deaf, fat, Mad, and aging arts on the lands currently known as Canada. We begin by setting the context, outlining why disentangling the disability, non-normativity, and Indigeneity knot is a necessary and urgent project for disability studies and activisms. Drawing on Indigenous ontologies of relationality, we present a methodological guide for our reading of Dion Fletcher’s work. We take this approach from her installation piece Relationship or Transaction?, which, we argue, foregrounds the need for white settlers to turn a critical gaze on transactional concepts of relationship as integral to a decolonized and an indigenized analysis of disability and non-normative arts. We then centre three original pieces created by Dion Fletcher to surface some of the intricacies of the Indigeneity/disability/non-normativity nexus that complicate recent discussions about recuperating Indigenous concepts of bodymind differences across white supremist settler colonial regimes on Turtle Island (North America) that seek to debilitate Indigenous bodies and lives. We intervene in these debates with reflections on what might be created—and what we might learn—when the categories of Indigeneity and (Western conceptions of) disability and non-normativity are understood as contiguous, particularly focusing on meaning-making within Dion Fletcher’s developing oeuvre.

Richardson, J. E., & Keifer-Boyd, K. (2020). Art Education and Disability Justice [Special Issue]. Research in Arts and Education, 2020(4). 

“As guest editors, we are pleased to introduce this special issue of the academic journal Research in Arts & Education (RAE) derived from papers presented at the 2nd International Conference on Disability, Arts and Education held at Moore College of Art & Design in Philadelphia, Pennsylvania, USA, 3–5 October 2019 (see https://www.dsae2019.com/)…. [the conference and papers in this special issue] engage with all forms of art, arts education, and arts-based research that advocates for first-person accounts of disability, disability identities and cultures, as well as addresses institutional, systemic, and societal barriers to disability justice.”

Articles in this special issue include:

Riegel, C., & Robinson, K. M. (2023). Interdisciplinarity, transdisciplinarity, and health humanities: Eye tracking, ableism, disability, and art creation. In C. Riegel & K. M. Robinson (Eds.), Health Humanities in Application [Sustainable Development Goals Series] (pp. 175-193). Palgrave Macmillan, Cham. DOI: https://doi.org/10.1007/978-3-031-08360-0_8.

This chapter examines a transdisciplinary research project that develops eye tracking hardware and software for the purpose of art creation. Interdisciplinarity and transdisciplinarity are defined in relation to the development of the health humanities as a field that inherently draws from multiple disciplines. Transdisciplinary research is seen to transcend disciplinary boundaries and to integrate community collaboration as a mode that is geared to addressing social challenges. Eye tracking art creation relies solely on eye movements to create art on digital screens and thus has implications for individuals with limited mobility. Disability is defined in relation to ableism, which is the discriminatory practice of enforcing a corporeal norm. We discuss how technology development that has implications for individuals with disabilities, such as ours, must resist ableist tendencies to attempt to solve disability as a problem that requires a cure. Thus, we frame our research project that has as its goal the development of tools that provide the enjoyment of art creation above all.

Sarkar, J. (2021). Bodies and expressions: Exploring the aesthetics of disability performance art. In How Bodies Matter [Special Issue]. Tête-à-Tête: Journal of French and Comparative Literature, 1, Article 6.

“This paper examines how the bodies of disabled performance artists challenge the system from the stage by pushing back against the barriers of normativity. Disabled performance artists call out cultural expectations and objectification, which troubles issues of ableism. Drawing on Jasbir Puar’s theory of assemblage, which deindividualizes agency, this essay interrogates how the aesthetics of disability performances invite the audiences to accept rather than reject unfamiliar physical forms. Using Tobin Siebers and Rosemarie Garland-Thomson’s concept of disability aesthetics, the paper challenges the particular inclination to equate normalcy with beauty. Drawing examples from disability performance art, the paper examines the representation of freakishness and its exhibition in Western societies, demonstrating how public displays of extraordinary bodies facilitated the definition of cultural distinctions as natural. Disability performances recreate the scenes of disability in such a way that the normative viewer requires a sort of justification after encountering a disabled body. This brings to the forefront the existence of social hierarchies and power relationships. The presence of the performance artist on the stage questions the dynamic relationship between the performer and the audience and results in the act of staring. The disabled body summons the stare, and the stare mandates the story. The essay focuses on how the disabled body, which had been isolated and confined in institutions for long, is emerging out of the boundaries of academic study and into the streets, stages, and daily lives of the nondisabled.”

Sayre, D. N. (2022, September). Care work and social justice in creative arts therapy: Putting queer performance theory and disability justice in conversation with drama therapy. The Arts in Psychotherapy, 80, 101940. DOI: https://doi.org/10.1016/j.aip.2022.101940.

The COVID-19 pandemic has increased existing health disparities for the LGBTQIA2S+ community, reducing (or eliminating) access to healthcare through traditional pathways and increasing the value and necessity of community care. Putting queer performance theory in conversation with disability justice frameworks allows for exploration of how the creative arts therapies – and drama therapy specifically – can adapt to meet the emerging needs of marginalized populations. Situating drama therapy within a queer disability justice lens can support drama therapists in reclaiming the most revolutionary aspects of drama therapy theory and principles. Contrasting clinical and community-based approaches to drama therapy via autoethnography, limitations of the medical model of mental healthcare are interrogated while offering examples of alternative approaches to providing care rooted in activism and community organizing.

Schroeder, F., & Lucas, A. (2021). Distributed participatory design: The challenges of designing with physically disabled musicians during a global pandemic. Organised Sound, 26(2), 219-229. DOI: https://doi.org/10.1017/S1355771821000261.

The global COVID-19 pandemic has been an extraordinary situation. Social distancing has impacted the vast majority of people, reorganising society, physically separating us from friends, family and colleagues. Collectively we found ourselves in a distributed state, reliant upon digital technologies to maintain social and professional connections. Some activities can translate unabated to a digital medium, with benefits, such as the convenience inherent in many online shopping and banking services. Other activities, particularly those which are socially engaged, including inclusive music-making or design, may need to be re-framed and re-thought due to the absence of in-person contact.

In Northern Ireland, the Performance Without Barriers (PwB) research group works with disabled artists from the Drake Music Project Northern Ireland (DMNI) to identify ways in which technology can remove access barriers to music-making. Since disabled people are experts in their unique lived experience of disability, they must be involved in the design process, an approach known as participatory design. At the end of 2020, many of us are still adjusting to the new normal, only beginning to understand the impact of distributed digital living. In this article, we examine how the socially engaged work of PwB has been affected, changed and adapted during the pandemic throughout 2019 to 2020, expanding ideas of distributed creativity to the notion of distributed design. The authors formalise the concept of socially engaged distributed participatory design, an approach that classifies PwB’s current research activities in the area of accessible music technology design and improvised musicking. Consideration is given to the impact the notion of ‘distribution’ has on degrees of participation.

Smith, G. (2021, April). Chronic illness as critique: Crip aesthetics across the Atlantic. Art History, 44(2), 286-310. DOI: https://doi.org/10.1111/1467-8365.12559. 

A growing body of theories proposes rethinking chronic illness as a position from which to analyse and resist neoliberalism. Interest in these ideas has been steadily growing in the art world, especially in the United Kingdom and the United States. Following on from a period of renewed institutional engagement with the politics of identity, this phenomenon also reflects the rise of ‘crip theory’ as an intersectional discourse that purports to offer insights beyond the traditional remit of disability studies. With the recent politics of austerity responsible for insolvency, dispossession and vulnerability on a mass scale, some even propose thinking of the present at large as ‘crip times’. Others caution against galleries and museums turning real people living with disabilities into a Zeitgeist. This essay explores these debates in relation to the work of Carolyn Lazard and Jesse Darling, two artists based on opposite sides of the Atlantic, who take a contrasting approach to the representation of sickness and vulnerability.

Symeonidou, S. (2019). Disability, the arts and the curriculum: Is there common ground? European Journal of Special Needs Education, 34(1), 50-65. DOI: https://doi.org/10.1080/08856257.2018.1435012.

This paper reports on the findings of a study that sought to examine firstly, the themes expressed in the art of disabled people in Greece and Cyprus and in interviews with these artists, and secondly, the ways that such art can serve the school curriculum. To this end, an electronic archive of the life stories and art of interest was analysed. The findings suggest that both the art and the interviews cover issues that are directly related to disability, and issues of general interest. A detailed analysis of two cases seeks to provide an in-depth understanding of the relevance of disabled artists and their work within the curriculum. The discussion focuses on issues emerging from the analysis, such as the potential of this art to enrich the school curriculum and promote inclusive education, and identifies the study’s contribution to the international literature about disability, the arts and the curriculum.

Viscardis, K., Rice, C., & Myktitiuk, K. (2018). Difference within and without: Health care providers’ engagement with disability arts. Qualitative Health Research, 29(9). DOI:  https://doi.org/10.1177/1049732318808252.

Re•Vision, an assemblage of multimedia storytelling and arts-based research projects, works creatively and collaboratively with misrepresented communities to advance social well-being, inclusion, and justice. Drawing from videos created by health care providers in disability artist-led workshops, this article investigates the potential of disability arts to disrupt dominant conceptions of disability and invulnerable embodiments, and proliferate new representations of bodymind difference in health care. In exploring, remembering, and developing ideas related to their experiences with and assumptions about embodied difference, providers describe processes of unsettling the mythical norm of human embodiment common in health discourse/practice, coming to know disability in nonmedical ways, and re/discovering embodied differences and vulnerabilities. We argue that art-making produces instances of critical reflection wherein attitudes can shift, and new affective responses to difference can be made. Through self-reflective engagement with disability arts practices, providers come to recognize assumptions underlying health care practices and the vulnerability of their own embodied lives.

Watkin, J., & DeGrow, D. (2022). Theatre is Not Built for Equity: Considering Intersectionality and Disability in Theatre Practice and Design [Forum]. Theatre Research in Canada, 43(2), 287-297. DOI: https://doi.org/10.3138/tric.43.2.f03.

The COVID-19 pandemic is an opportunity for theatre organizations to reflect, observe, and consider the practices they have in place for access and care throughout their spaces and processes. How can this moment produce more care-full theatre spaces that work interdependently and excitedly to navigate the needs of the communities they serve? This article will combine the frameworks of disability justice, universal design, and value-explicit design to offer a new outlook that can be applied to the redesign of theatre spaces in Canada that make primary use of proscenium and thrust stage orientations. These concepts add to previous scholarship on access and intersectionality by demonstrating how current disability theatre practice in Canada can directly guide the design and use of theatre spaces in Canada. Further, they will respond to the need for a significant reconsideration in the way theatre spaces are used in Canada, as few companies prioritize accessibility beyond what is legally required of them.

Watson, K., & Hiles, T. W. (Eds.). (2022). The Routledge Companion to Art and Disability. New York: Routledge. DOI: https://doi.org/10.4324/9781003009986.

The Routledge Companion to Art and Disability explores disability in visual culture to uncover the ways in which bodily and cognitive differences are articulated physically and theoretically, and to demonstrate the ways in which disability is culturally constructed.

This companion is organized thematically and includes artists from across historical periods and cultures in order to demonstrate the ways in which disability is historically and culturally contingent. The book engages with questions such as: How are people with disabilities represented in art? How are notions of disability articulated in relation to ideas of normality, hybridity, and anomaly? How do artists use visual culture to affirm or subvert notions of the normative body? Contributors consider the changing role of disability in visual culture, the place of representations in society, and the ways in which disability studies engages with and critiques intersectional notions of gender, race, ethnicity, class, and sexuality.

This book will be particularly useful for scholars in art history, disability studies, visual culture, and museum studies.

Weinert-Kendt, R. (Ed.). (2021, March 26). Disability and theatre [Feature Issue]. American Theatre (Digital Edition). New York: Theatre Communications Group.

“The concept of disability justice, which infuses and animates some of the stories in the bustling new package on Disability and Theatre we’re proud to publish today… has become widely embraced as a way to name and center the intersecting oppressions of multiply marginalized populations, including the disabled, Black and Indigenous populations, people of color, queer and trans and gender nonconforming folks, immigrants, and the poor. As the theatre field reckons with the demands of We See You, White American Theater and other accountability movements, it is crucial not to lose sight of the intertwined struggles for equity and inclusion waged by and on behalf of the most vulnerable and historically excluded.”

Wexler, A. (2022). An anti-ableist framework in art education. In M. Hafeli (Ed.), Brave Spaces and Next Practices: Reimagining the Preparation of Art Educators [Special Issue]. Art Education, 75(1), 30-35. DOI: https://doi.org/10.1080/00043125.2021.1984797.

“I argue that in art education, unlike other subjects, educators can use the visual arts to advance anti-ableism. The purpose of this article is to acknowledge that art education practices rarely take advantage of this possibility” (p. 30).

Wexler, A., & Kallio-Tavin, M. (Eds.). (2019, December). Art Education and Disability Studies [Special Issue]. IMAG #8. São Salvador, Viseu, Portugal: The International Society for Education Through Art (InSEA).

“Welcome to IMAG #8. This issue is inspired by the recent work in disability studies and the arts, still in its nascent stage in most countries. We were particularly inspired to form the call for essays of this issue based on the work of Mia Mingus, a well-known disability activist and disabled adoptee from Korea, who encourages the notion that the disability identity does not exist in isolation, but rather coexists with other identity markers, such as sexuality, class, gender and race, as well as the social and political impacts of societies—the ubiquitous “inequalities of socioeconomic and racial structures” (Connor, 2016, p. 496). Disability activists insist on their inclusion with other marginalized and oppressed identities, since they believe that oppression is what they have most in common within the highly diverse disability category. In this issue the guest editors advocate for a less restricted discourse about disability beyond the “multi-layered establishment” of special education (p. 494). As David Connor suggests, in a democratic society alternative ideas to established practices deserve attention. The art educators and artists in this issue offer a variety of ways these ideas can take place in the classroom, the studio, the community center, or on the stage. The authors also explore how art practices can help to inform knowledge of society and its institutions, which often are based on normative values and practices…. The authors in this issue reflect the vibrancy of an international disability arts community by shifting the art made by the disabled artist from a form of inclusive education or therapy to an important cultural contribution.”

Winter, N. (2023). Aesthetics of pain, fatigue, and rest: Working methods of chronically ill artists within disability-led performances. In A. Bê & E. Sheppard (Eds.), Chronic Illness and Representation [Special Issue]. Journal of Literary & Cultural Disability Studies, 17(2), 233-250. DOI: https://doi.org/10.3828/jlcds.2023.17. 

The article examines different aesthetics of chronic pain, fatigue, and rest by focusing on three performances by chronically ill artists: Rachel Bagshaw’s The Shape of the Pain, Raquel Meseguer Zafe’s A Crash Course in Cloudspotting and Ania Nowak’s Inflammations. Weaving together curatorial practice, performance analysis, and crip theory as well as bringing lived experiences of chronic pain and fatigue in conversation with critical readings of chronic illness within disability studies, the article aims to investigate the potential of crip aesthetics in disability arts by exploring chronic illness as what Carrie Sandahl calls a “representational conundrum” in disability performance and the representation of disability in general.

Zhuang, K.V. (2021). The included: Disability-led arts within inclusion in Singapore. Journal of Literary & Cultural Disability Studies, 15(4), 471-487.

A culture of inclusion pervades Singapore, one where disabled bodies are marked and folded into life by the state and its associated agencies. The effect of this inclusion has been the production of a new figure of disability, or what I call the included. In the midst of this inclusion, the disabled-led production of And Suddenly I Disappear: The Singapore ‘d’ Monologues in May 2018 marks a key milestone. The article considers the deployment of disability within the production and how it resists hegemonic representations of disabled people in Singapore. Particular consideration is given to the production’s orientation toward the disabled subject and the following questions: How is disability mobilized with and against this climate of inclusion? How is the disabled body deployed to resist hegemonic and ableist constructs of disability within inclusion, where disabled bodies are included because they are regarded as productive subjects of the nation-state? What kinds of productive tensions exist between the included and the disabled subject?

Academic Programs in Disability Studies

This Google Form seeks to collect information on Academic Programs in Disability Studies and is based on the listing previously compiled and maintained by Rachael Zubal-Ruggieri at Syracuse University.

Entries should consist of Academic Programs in Disability Studies in North American colleges and universities. The title “Disability Studies” is broadly used, and is sometimes used to refer to programs in clinical or instructional fields. This listing does not include research or training centers not offering formal academic programs.

To be considered for this listing, the programs in this listing should meet the following criteria:

  • The sponsoring university offers a four-year undergraduate degree or Master’s or doctoral degrees;
  • The programs offer a formal academic program, including a degree, concentration, specialization, minor, major, or certificate in Disability Studies;
  • The programs include disability course work in non-clinical and non-instructional fields (e.g., the Humanities, Social Sciences, Literature, Law, Policy Studies, or the Visual or Performing Arts); and
  • Information describing the programs is available online.

Information collected to date can be viewed online via Google Sheets.

If Google Forms are not usable, please consider sharing information on your Academic Program via email at razubal@syr.edu. Be sure to include information on:

  • Academic Institution
  • Program(s)
  • Academic Unit
  • Address
  • Contact
  • Phone
  • E-mail
  • Website
  • Any applicable notes (i.e., program is completely online, hybrid, in process, and so forth)

This Google Form is included below and is also shareable. Please feel free to distribute.

OIPO Disability Abstracts: Design

This literature review contains relevant material across several disciplines taking into account the interrelationship of design and disability. Included are books, articles, and other resources on topics such as:

  • Disability interaction (DIX)
  • Geography, inclusive and accessible architecture, and the built environment
  • Inclusive design and inclusive design education
  • Makerspaces
  • Participatory and inclusive research, co-production, co-design, co-creation, and methodologies
  • Social media, technology and web accessibility
  • Universal design
  • User involvement and user experience

Updated 10/24/2024

Allen, M. (2021, February 10). Designing for Disability Justice: On the need to take a variety of human bodies into account. Harvard University Graduate School of Design News Cambridge, MA. 

“Disability ought to be an exciting subject for architects: it’s about lived experience, problem solving, and designing a better built environment. While the topic engages with critical theory and aspirations for collective life, it’s often seen as a field that requires checking boxes and fulfilling requirements, or worse, a touchy subject strewn with outdated terms and outmoded habits of thought. The typical routines of design don’t always take the variety of human bodies into account. But I recently had the chance to talk to four practitioners who are changing minds and moving the field forward: Aimi Hamraie is associate professor of Medicine, Health, and Society and American Studies at Vanderbilt University; Sara Hendren (MDes ’13) is a professor at Olin College and the author of What Can a Body Do?; Sierra Bainbridge is senior principal and managing director at MASS Design Group; and Jeffrey Mansfield (March ’14) is a design director at MASS.”

Aniyamuzaala, J.R. (2023). Inclusion of persons with disabilities by design: From product centered to justice and person centered inclusive co-design. In M. H. Rioux, J. Viera, A. Buettgen, & E. Zubrow (Eds.), Handbook of disability: Critical thought and social change in a globalizing world (pp. 1-16). Singapore: Springer. DOI: https://doi.org/10.1007/978-981-16-1278-7_51-1.

Persons with disabilities and their needs were excluded by design according to the article 2 of the Convention on the Rights of Persons with Disabilities. The review of the literature and secondary data revealed the three inclusive design school of thoughts and practices, and these included the following: The Canadian, the United Kingdom (UK), and the Technology Industry’s Inclusive Design school of thoughts and practices. The qualitative critical analysis of the three inclusive design school of thoughts resulted into the Justice and Person Centered Inclusive Co-Design (JPCICD) as the fourth inclusive design school of thought and practice. The JPCICD expands on the Canadian inclusive design school of thought and practice to comprehensively cover justice, equity, and human diversity dimensions of design. The JPCICD shifted the focus of inclusive design from product and market system to person’s social, political, economic, cultural, and technological justice or total justice. It also considers the equity principle in its definition. The JPCICD was developed based on the foundation of the human rights and justice principles such as equity and equality human diversity, freedom of choice, and others. JPCICD focuses on equitable distribution of resources and power to the diverse excluded persons with disabilities by design.

Anonymous 1, Anonymous 2, Anonymous 3, Herd, N., Anonymous 4, & Kalifer, D. (with support from Erin Kuri and Ann Fudge Schormans) (2022) Justice vs. injustice: Poetic dialogue about the meaning of Disability Justice among people labelled/with intellectual disability. In P. D. C. Bones, J. Smartt Guillion, & D. Barber (Eds.), Redefining Disability [Personal/Public Scholarship Series Vol. 12] (pp. 84–89). Boston: Brill. DOI: https://doi.org/10.1163/9789004512702_013. 

“The DiStory project is a multi-year, multi-generational inclusive project in which co-researchers labelled/with an intellectual disability have been collaborating with non-labelled academic and community-based co-researchers to design, develop, and conduct a project whose primary purpose is the co-production of knowledge and development of teaching materials for postsecondary students about the lives of people labelled/with intellectual disabilities. (We use the language labelled/with in recognition of the heterogeneity of people understood to have intellectual disability and of the hurtful impacts being labelled can have on people’s lives.)

Co-researchers labelled/with intellectual disabilities include survivors of Ontario’s large-scale institutions, as well as younger generations of people labelled/with intellectual disabilities. This was by design. It is a means of preserving and sharing survivors’ history of institutional ‘care’ with younger generations of people labeled/with intellectual disabilities who, while never incarcerated in these institutions, nonetheless experience institutionalized care and ongoing experiences of discrimination and violence. It was intended as well to challenge perceptions that the closure of institutions has meant that life is now ‘better’ for people labelled/with intellectual disabilities. Instead, it makes plain that while large-scale institutions may, at this moment, be closed in Ontario, institutions and such forms of care continue, and living ‘in the community’ is no guarantee of a ‘good life’ of one’s choosing.

In what follows, the co-researchers labelled/with intellectual disabilities re-define disability using a framework of disability justice. They do so by using a form of poetic dialogue to contrast meanings of disability (in particular, ‘intellectual disability’) as articulated in their understandings of ‘disability justice’ and its converse—’disability injustice’” (pp. 84-85).

DREEM: Moving from Empathy to Enculturation in Disability Related Human-Centered Design

Baltaxe-Admony, L. B., Duval, J., & Ringland, K. E. (2024). DREEM: Moving from Empathy to Enculturation in Disability Related Human-Centered Design. In ASSETS ’24: Proceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility, Article No. 50, 1-17. New York: DOI: https://doi.org/10.1145/3663548.3675642.

Empathy-building, the first stage in human-centered design, often involves methods that inadvertently reinforce negative stereotypes and biases toward disabled communities. In this work, we introduce a new method: Disability-Related Empathy from Existing Media (DREEM). This method focuses on enculturation rather than traditional ideas of empathy. DREEM leverages media created by disabled individuals to facilitate a deeper, culturally informed understanding. Cultural content is rich with authentic perspectives and tacit design knowledge from people with disabilities. Our four-step process includes (1) discovering relevant media, (2) close reading, (3) reflective journaling, and (4) aggregation of insights. In this article, we present our process of creating DREEM using research through design in multiple research and education contexts. Our findings show that DREEM can be applied in both design classrooms and research contexts to foster a more nuanced understanding of disability for newcomers to the space.

Bayor, A. A., Brereton, M., Sitbon, L., Ploderer, B., Bircanin, F., Favre. B., & Koplick, S. (2021, June). Toward a competency-based approach to co-designing technologies with people with intellectual disability. ACM Transactions on Accessible Computing, 14(2), 6. DOI: https://doi.org/10.1145/3450355. 

Ability-based design is a useful framework that centralizes the abilities (all that users can do) of people with disabilities in approaching the design of assistive technologies. However, although this framework aspires to support designing with people with all kinds of disabilities, it is mainly effective in supporting those whose abilities can be clearly defined and measured, in particular, physical and sensory attributes of ability. As a result, the ability-based design framework only provides limited guidance to design with users with intellectual disability, whose cognitive, physical, sensory, and practical abilities vary along a spectrum. In this article, we reflect on a long-term co-design study where we leveraged what we termed “competencies,” i.e., the representative practical skills people develop from their participation in life activities, in particular, mainstream technologies, such as social media and the Internet. Our reflection is based on our experience in designing SkillsTube, a web application we co-designed with young adults with intellectual disability to support them to learn life skills through videos. The app’s design, which explored and leveraged their social media participation competencies, supported the fundamental participation of all participants and their peers. Their familiarity with the app’s social media-inspired design features fostered confidence in their participation, usability, and engagement. Drawing on the findings and design process of the app, we discuss a Competency-based approach to designing with people with disabilities that extends upon ability-based design, by grounding it in user competencies.

Bennett, C. L., Peil, B., & Rosner, D. K. (2019, June). Biographical prototypes: Reimagining recognition and disability in design. In DIS ’19: Proceedings of the 2019 on Designing Interactive Systems Conference (pp. 35–47). DOI: https://doi.org/10.1145/3322276.3322376.

This paper aims to elevate stories of design by people with disabilities. In particular, we draw from counter-storytelling practices to build a corpus of stories that prioritize disabled people as contributors to professional design practice. Across a series of workshops with disabled activists, designers, and developers, we developed the concept of biographical prototypes: under-recognized first-person accounts of design materialized through prototyping practices. We describe how the creation of such prototypes helps position disabled people as central contributors to the design profession. The artifacts engendered an expanded sense of coalition among workshop participants while prompting reflection on tensions between recognition and obligation. We end by reflecting on how the prototypes-and the practices that produced them-complement a growing number of design activities around disability that reveal complexities around structural forms of discrimination and the generative role that personal accounts may play in their revision.

Blanchard, E. (2022). Cripping assistive tech design: How the current disability framework limits our ability to create emancipatory technology. In T. Borangiu, D. Trentesaux, P. Leitão, O. Cardin, & L. Joblot (Eds.), Service Oriented, Holonic and Multi-agent Manufacturing Systems for Industry of the Future SOHOMA 2021 [Studies in Computational Intelligence, vol 1034] (pp. 377-388). Cham, Switzerland: Springer. DOI: https://doi.org/10.1007/978-3-030-99108-1_27. 

Recent advances in assistive technologies have blurred the lines between compensating for impairments — for disabled users — and augmenting capabilities — such as with cobotic systems. This article examines how assistive technologies generally seek to compensate for a single deficiency, as opposed to being more generalist tools meant to improve the lives and autonomy of (not necessarily) disabled users. It starts with a brief presentation of the different frameworks used to model disability in the social sciences, and how some of these frameworks could be used to boost creativity in the design of assistive devices. It then showcases a series of examples where innovative design ideas allowed for devices that go beyond trying to fix disability and instead liberate their users. The article concludes with a reflection on the ethical interactions between transhumanism and disability, as well as the possibilities created by new distributed design/construction networks affiliated with open-source/open-design models. This reflection can serve as a basis for a discussion about the necessary evolution of industrial practices in the design of assistive technologies, no matter whether they are designed to compensate impairments or augment capabilities.

Cerdan Chiscano, M. (2021). Giving a voice to students with disabilities to design library experiences: An ethnographic study. In G. Wolbring (Ed.), Ability Expectation and Ableism Studies (Short Ability Studies) [Topical Collection]. Societies, 11(2), 61. DOI: https://doi.org/10.3390/soc11020061. 

Although librarians generally display an inclusive management style, barriers to students with disabilities remain widespread. Against this backdrop, a collaborative research project called Inclusive Library was launched in 2019 in Catalonia, Spain. This study empirically tests how involving students with disabilities in the experience design process can lead to new improvements in users’ library experience. A mix of qualitative techniques, namely focus groups, ethnographic techniques and post-experience surveys, were used to gain insights from the 20 libraries and 20 students with disabilities collaborating in the project. Based on the participants’ voices and follow-up experiences, the study makes several suggestions on how libraries can improve their accessibility. Results indicate that ensuring proper resource allocation for accessibility improves students with disabilities’ library experience. Recommendations for library managers are also provided.

Chang, Y., Sitbon, L., & Simpson, L. (2021, October). Towards a secured and safe online social media design framework for people with intellectual disability. In ASSETS ’21: The 23rd International ACM SIGACCESS Conference on Computers and Accessibility, Art. No.: 91, 1–4. DOI: https://doi.org/10.1145/3441852.3476540. 

This paper aims to create a tangible design framework for practitioners to follow when designing an online social media platform for individuals with intellectual disability. Currently, legislation and best practice consider cyber security and safety for the general public, giving particular attention to the protection of children. However, despite the support in health care, financial assistance, and education, individuals with intellectual disability are rarely considered when it comes to cybersafety. To achieve inclusivity, an integrative review was conducted to make connections between disciplines of education and information technology and law. The process was split into three phases: (i) understanding the challenges those with intellectual disability face, both when using a social media interface and when evaluating safety risks; (ii) identifying gaps and understanding the implications for persons with intellectual disability from legislative and design and design principles; and (iii) visualisation of data flow to model interactions. In conclusion, an inclusive framework is proposed for practitioners when designing online social media platforms for people with intellectual disability.

Coleman, D., & Trudelle, M. (2019). How to make design thinking more disability inclusive. Stanford Social Innovation Review. DOI: https://doi.org/10.48558/BSDF-A033. 

A three-tiered framework for making human-centered design more inclusive of people with disabilities can help organizations improve their own programs.

Cook, L., Rothstein, P., Emeh, L., Frumiento, P., Kennedy, D., McNicholas, D., Orjiekwe, I., Overton, M., Snead, M., Steward, R., Sutton. J. M., Bradshaw, M., Jeffreys, E., Charteris, S., Ewans, S., Williams, M., Grierson, M., & Chapko, D. (2021, September). In the physical to digital transition with friends—A story of performing inclusive research together no matter what life throws at you. In I. Strnadová, J. Loblinzk, M. L. Wehmeyer (Eds.), Transitions in the Lives of People with Intellectual Disability [Special Issue]. British Journal of Learning Disabilities, 49(3), 271-281. DOI: https://doi.org/10.1111/bld.12408. 

Background: As part of “The Hub” project at Wellcome Collection, a team of eight co-researchers with learning disabilities along academics created an online survey to challenge public understanding of learning disabilities. Using creative and arts-based methods, co-researchers remotely co-analysed the survey results amid COVID-19 lockdown challenges. Here, we explore our unexpected “transition” journey from the physical “Hub” to the digital space.

Methods: We organised 20 sessions at The Hub and used audio/video/photo recordings to capture key moments. With the lockdown, we ensured that every co-researcher had access to and support for digital technologies. Throughout 2020, we organised 28 Zoom meetings involving all co-researchers. In June, Lilly (a multi-media journalist and she lives by the motto striving for equal opportunities for people with disabilities and fairness throughout) and Sue (an independent Leadership Coach and Mentor) conducted Zoom interviews with the co-research team to reflect on our transition journey. In this creative video-form submission accompanied by an accessible report, Lilly puts together a story of how we transitioned and felt throughout this process.

Findings: We identify that trust and the social bonds established at The Hub are the key components of our transition to the digital environment. There is the tension between longing for in-person contact and trying to make the most out of the situation to maintain these relationships. At the heart of this is the motivation to “change the world” and strive for social justice. Having time and opportunity to improve, and co-researchers’ steady growth in confidence are equally important.

Conclusions: The determination for maintaining friendships among co-researchers and the motivation to “change the world” overcome COVID-19-related challenges in continuing co-research.

Accessible summary:

  • We are members of an arts organisation who support the creative talents of people with learning disabilities and autistic people.
  • We have been working on a research project at “The Hub” at Wellcome Collection in a team consisting of academic and nonacademic professionals with diverse abilities.
  • Because of coronavirus, we all had to stay home to stay safe. To carry on with our research project, we participated in 28 creative research meetings on Zoom.
  • In this paper and accompanying video, we will tell you how we did it. We will also tell you how we felt about moving away from “The Hub” and trying to do research remotely from home.
  • We hope our project has shown that people with learning disabilities can transition well to working online when there is trust and mutual respect.

Costanza-Chock, S. (2020, March). Design justice: Community-led practices to build the worlds we need. Cambridge, MA: The MIT Press.

What is the relationship between design, power, and social justice? “Design justice” is an approach to design that is led by marginalized communities and that aims explicitly to challenge, rather than reproduce, structural inequalities. It has emerged from a growing community of designers in various fields who work closely with social movements and community-based organizations around the world.

This book explores the theory and practice of design justice, demonstrates how universalist design principles and practices erase certain groups of people —specifically, those who are intersectionally disadvantaged or multiply-burdened under the matrix of domination (white supremacist heteropatriarchy, ableism, capitalism, and settler colonialism) — and invites readers to “build a better world, a world where many worlds fit; linked worlds of collective liberation and ecological sustainability.” Along the way, the book documents a multitude of real-world community-led design practices, each grounded in a particular social movement. Design Justice goes beyond recent calls for design for good, user-centered design, and employment diversity in the technology and design professions; it connects design to larger struggles for collective liberation and ecological survival.

The full text of Design Justice is Open Access.

Cottrell, C. (2020). Gentle House: Co-designing with an autistic perception. Co-constructing Body-Environments [Special Issue]. Idea Journal, 17(2), 105-20.  DOI: https://doi.org/10.37113/ij.v17i02.371.

This article discusses the early phases of Gentle House, a spatial design research project that works with concepts of autistic perception and a collaborative design process to renovate the home of a family of four. The family includes a ten-year-old autistic child who is currently being educated via correspondence schooling. In working alongside the family and understanding the uniqueness and complexity of their needs, the goal is to create spaces that are stimulating and enjoyable for them to live in.
The autistic child’s experience of the physical world is pathologised as sensory processing disorder. This is a condition where there are differences in the integration of sense modalities that can lead to moments of being overwhelmed by some stimulus and a more highly tuned receptivity to other stimuli, such as texture and smell. This design research rejects a pathological framework for characterising these experiences and uses co-design approaches with the aim of learning from his engagement with the world. In particular, his highly tuned awareness of phenomena that ‘neurotypical’ perception tends to tune out or overlook. The larger implication of this project and approach is a rethinking of our living and working environments towards sensorially richer and more inclusive ends.
The early phases of the project have involved a series of spatial, material, and sensory design prototypes, which are discussed in terms of their co-creation and the perceptual richness of space-time experiences. The design knowledge gleaned from these prototypes is briefly contextualised within existing frameworks for inclusive design, before outlining future trajectories for the research.

Davis, J. (2022). Accessibility in/as caring. In The caring city: Ethics of urban design (pp. 63-87). Bristol, UK: Bristol University Press. DOI: https://doi.org/10.51952/9781529201222.ch004.

I began to allude to the importance of accessibility in facilitating new patterns of care in the previous chapter, and the goal of this chapter is to consider in depth how urban design can mobilize notions of access to influence care needs, relations and practices. However, I begin the discussion with a quandary since two of the major goals of accessibility as constructed in the context of urban design theory have an uneasy relationship with the ideas of care and from the ethics of care which I have presented thus far. The first of these goals is personal autonomy. The accessibility of built form is often seen to shape the autonomy that people such as those with a mobility or sensory impairment have in looking after themselves and choosing how and where to live. The second goal is universality. The goal of accessible urban design, such as within the context of ‘universal design’ discourses, is seen to be the creation of city forms and places that are navigable by all, satisfying principles of inclusivity and equity (see, for example, Steinfeld and Maisel, 2012).

DePoy, E., & Gilson, S. (2010). Disability design and branding: Rethinking disability within the 21st Century. Disability Studies Quarterly, 30(2). DOI: https://doi.org/10.18061/dsq.v30i2.1247. 

“In this paper, we present our recent thinking about disability as disjuncture and the significant role that design and branding play in creating this ill-fit. However, simultaneously, design and branding provide the contemporary opportunity and relevant strategies for rethinking disability and social change, and healing disjuncture. As always, this thinking is a work in progress with invitation for criticism and dialogue. We begin by setting the chronological and intellectual context that informs our ideas. We then clarify Disjuncture Theory and link design and branding to revisioning a globe in which disjuncture is healed by contemporary relevant theorizing and praxis.”

Dokumaci, A. (2018). Disability as method: Interventions in the habitus of ableism through media-creation. In H.Thompson & V. Warne (Eds.), Blindness Arts [Special Issue]. Disability Studies Quarterly, 38(3). DOI: https://doi.org/10.18061/dsq.v38i3.6491. 

In this article, I share and reflect on a research-creation video that introduces what I call ‘disability as method’ to critical disability and media studies. The video draws on a year-long visual ethnography, during which I collaborated with a blind and a physically disabled participant to explore the specificities of their mobility experiences in the city of Montreal. In making this video, I use the affordances of filming and editing in creative ways both to explore what access could mean to differently disabled people in the space of the city and to reimagine new possibilities of media-making informed by blindness gain. To this end, I introduce a new audio description (AD) technique by using stop-time as crip-time, and deploying AD not only as an accessibility feature but also as a blind intervention in the creative process of filmmaking itself.

Also available are Supplementary Video Resources for this article.

Doucet, M., Pratt, H., Dzhenganin, M., & Read, J. (2022, August). Nothing About Us Without Us: Using Participatory Action Research (PAR) and arts-based methods as empowerment and social justice tools in doing research with youth ‘aging out’ of care. In D. Collin-Vézina & M. Sebrena Jackson (Eds.), Relations at the Hearth of Foster Children, Youth and Families Wellness [Special Issue]. Child Abuse & Neglect, 130(3), 105358. DOI: https://doi.org/10.1016/j.chiabu.2021.105358. 

Child welfare practices and policies are often disconnected from youth in care’s perspectives and lived realities. Youth ‘aging out’ of care should be empowered to define their own needs, goals and success based on the unique context they are transitioning from. In research, this can be supported by engaging them as co-researchers through emancipatory approaches.

Participatory Action Research (PAR) requires collaboration with those who are affected by the issue being studied in all aspects of the research, with the aim to build advocacy capacity and affect transformative social change. Photovoice employs photography and group dialogue – the fusion of images and words – as an empowerment tool, through which individuals can work together to represent their own lived experiences rather than have their stories told and interpreted by others. This is a particularly powerful approach in engaging youth with care experience, as they are often systemically disenfranchised, isolated and in need of connections to the community.

This article presents the Relationships Matter for Youth ‘Aging Out’ of Care project, a Participatory Action Research (PAR) photovoice research project with young people with lived experience, as a case study. The project aimed to take a closer look at the relationships that matter to youth from care and how they can be nurtured over time. Narratives about the experience of participating in the project are also featured, from the perspectives of three of the youth co-researchers. Some of the benefits, challenges and lessons learned are also explored, framed within the Relationships Matter project methodology and process. Recommendations for future social work research are also presented.

Fletcher, V., Bonome-Sims, G., Knecht, B., Ostroff, E., Otitigbe, J., Parente, M., & Safdie, J. (2015, January). The challenge of inclusive design in the US context. Applied Ergonomics, 46(B), 267-273. DOI: https://doi.org/10.1016/j.apergo.2013.03.006.

The paper considers the evolution of thinking and practice of inclusive design in the United States since 1993, the year of the first special edition of Applied Ergonomics on inclusive design. It frames the examination initially in terms of the US social mores that substantially influence behavior and attitudes from a defining individualism to legal mandates for accessibility to the nation’s ingrained obsession with youth and delusional attitudes about aging. The authors explore the disparate patterns across the design disciplines and identify promising linkages and patterns that may be harbingers of a more expansive embrace of inclusive design in the years ahead.

Foley, K., Attrill, S., & Brebner, C. (2021). Co-designing a methodology for workforce development during the personalisation of allied health service funding for people with disability in Australia. BMC Health Services Research, 21, 680. DOI: https://doi.org/10.1186/s12913-021-06711-x. 

Background: Internationally, health and social services are undergoing creative and extensive redesign to meet population demands with rationed budgets. This has critical implications for the health workforces that serve such populations. Within the workforce literature, few approaches are described that enable workforce development for health professions in the service contexts that emerge from large scale service redesign in times of industry shift. We contribute an innovative and robust methodology for workforce development that was co-designed by stakeholders in allied health during the personalisation of disability funding in Australia (the introduction of the National Disability Insurance Scheme).

Methods: In the context of a broad action research project, we used program logic modelling to identify and enact opportunities for sustainable allied health education and workforce integration amidst the changed service provision context. We engaged with 49 industry stakeholders across 92 research engagements that included interviews (n = 43), a workshop explicitly for model development (n = 8) and a Project Advisory Group (n = 15). Data from these activities were inductively coded, analysed, and triangulated against each other. During the program logic modelling workshop, we worked with involved stakeholders to develop a conceptual model which could be used to guide trial and evaluation of allied health education which was fit-for-purpose to emerging workforce requirements.

Results: Stakeholder interviews showed that drivers of workforce design during industry shift were that (1) service provision was happening in turbulent times; (2) new concerns around skills and professional engagement were unfolding for AHP in the NDIS; and (3) impacts to AHP education were being experienced. The conceptual model we co-designed directly accounted for these contextual features by highlighting five underpinning principles that should inform methodologies for workforce development and AHP education in the transforming landscape: being (1) pedagogically sound; (2) person- or family-centred; (3) NDIS compliant; (4) informed by evidence and (5) having quality for all. We use a case study to illustrate how the co-designed conceptual model stimulated agility and flexibility in workforce and service redesign.

Conclusions: Proactive and situated education of the emerging workforce during policy shift is essential to realise future health workforces that can appropriately and effectively service populations under a variety of changing service and funding structures – as well as their transitions. We argue that collaborative program logic modelling in partnership with key stakeholders including existing workforce can be useful for broad purposes of workforce (re)design in diverse contexts.

Forlano, L. (2021). Dispatches on humanity from a disabled cyborg. In S. Maffei (Ed.), Galaxy of Design Research [Feature Issue]. Diid disegno industriale industrial design No. 75, 7. DOI:  https://doi.org/10.30682/diid7521g. 

This essay engages with the more than human from the perspective of the disabled cyborg in order to explore themes around human-machine relations and pluriversal design in the context of hundreds of years of dehumanization. Drawing on my own experiences with “smart” medical devices I argue for the value of autoethnographic accounts and praxis as a mode of expanding who can participate in the production of knowledge as well as in the field of design. In the quest for new design practices around the more than human, I ask who is missing from these conversations and why?

Fraser-Barbour, E., Robinson, S., Gendera, S., Burton-Clark, I., Fisher, K. R., Alexander, J. & Howe, K. (2023). Shifting power to people with disability in co-designed research. Disability & Society. DOI: https://doi.org/10.1080/09687599.2023.2279932.

This paper explores tensions navigated by researchers and project leaders when involving people with disability as experts in co-design and in the core team. Part of an evaluation aiming to improve paid employment of people with intellectual disability is used to consider this work. Assemblage analysis of the data assisted in identifying a range of material and social conditions, flows, and factors that de- and re-territorialise power in the co-design process. The expertise of people with disability informed research design. Structural conditions of funding and institutional support were foundational to the co-design. These included accessible practices, core roles for people with disability and resolving ableist conditions. Power shifts were easily undermined by institutionalised norms that disrespected the co-design contributions. When people in decision-making positions and allies recognised the value of codesigning research, it was key to centring valuable knowledge in articulating key issues, methodology, and analysis.

Froehlich, J. E., Brock, A. M., Caspi, A., Guerreiro, J., Hara, K., Kirkham, R., Schöning, J., & Tannert, B. (2019, March-April). Grand challenges in accessible maps. Interactions, 26(2), 78–81. DOI: https://doi.org/10.1145/3301657. 

In this forum we celebrate research that helps to successfully bring the benefits of computing technologies to children, older adults, people with disabilities, and other populations that are often ignored in the design of mass-marketed products.

Fudge Schormans, A., Wilton, R., & Marquis, N. (2019, September). Building collaboration in the co-production of knowledge with people with intellectual disabilities about their everyday use of city space. In L. Holt, J. Jeffries, E. Hall & A. Power (Eds.), Geographies of Co-production: Learning from Inclusive Research Approaches at the Margins [Special Issue]. Area, 51(3), 415-422. DOI: https://doi.org/10.1111/area.12492. 

We engage with scholarship in participatory geographies and critical disability studies to consider the difficulties and prospects of co-producing knowledge with people with intellectual disabilities in a project examining their uses of urban public space. The research employed an inclusive, collaborative design and had an explicit focus on social change, articulated in the research process (e.g., the development of research and self-advocacy skills) and outcomes (e.g., lobbying to improve material conditions, challenging ableist assumptions about “intellectual disability”). Our analysis highlights three tensions: the time/spaces constraints faced in “slow” participatory work, the nature and duration of relationships among collaborators and the shifting relations of power and influence within the project. We reflect critically on how these tensions were negotiated and what lessons might be learned for participatory practice.

Galán, I. G. (2022, June). Unlearning ableism: Design knowledge, contested models, and the experience of disability in 1970s Berkeley. Journal of Design History, epac018. DOI:  https://doi.org/10.1093/jdh/epac018. 

This article explores the design pedagogies developed through the alliance between disability activists at the Center for Independent Living (CIL) and a number of faculty led by Raymond Lifchez at U.C. Berkeley in the 1970s and 80s. Founded by Bay Area activists including disabled students at U.C. Berkeley, the CIL provided a critical platform for advocacy and services within the disability community. In a number of seminars and studios, Lifchez and others followed the initiatives of the CIL, documented the transformation of the built environment by disabled individuals in Berkeley, and incorporated their experiences in the design process. Rather than approaching disabled individuals as bearers of special needs, a number of specific pedagogical strategies explored their expertise and resourcefulness and incorporated them as informants, consultants, and designers. Supported by archival sources, oral histories, and publications of the period, this article contributes to ongoing discussions concerning the relationship between design and the environmental and social construction of disabilities as well as to the definition of design and architecture expertise. These pedagogies critically mobilized models to advance partial and flexible design interventions and simultaneously transformed the classroom into a model that challenged the naturalization of able-bodiedness in the built environment.

Ganesh, K., & Lazar, A. (2021). The work of workplace disclosure: Invisible chronic conditions and opportunities for design. PACM on Human-Computer Interaction, 5(CSCW1), Article 73. DOI: https://dl.acm.org/doi/10.1145/3449147. 

Health disclosure at work is complicated for people with invisible chronic conditions. Due to the lack of visible symptoms, invisible conditions affect the work life of people in ways that are not obvious to others. This study examines how people disclose and conceal their conditions in the workplace and opens the design space for this topic. In the first phase, we analyzed posts on two subreddit forums, r/migraine and r/fibromyalgia, and found a range of strategies that individuals use to disclose or conceal their conditions. In the second phase, we created five technological design concepts based on these strategies that were shown to eight people with migraines or fibromyalgia in semi-structured interviews. Based on these phases, we contribute understandings of disclosure and concealment of invisible conditions in the workplace for future research, such as potential areas for intervention ranging from individual to societal level efforts, as well as the potential and limitations of relying on empathy from others.

Graeme. (2021, August 12). A11y and Neurodiversity in Design: Towards a more Inclusive Web. Prototypr Digest Issue #210. 

Curated list of articles on neurodiversity, accessibility and more with a focus on the web.

Groulx, M., Freeman, S, & Lemieux, C. (2022, March). Accessible nature beyond city limits – A scoping review. Journal of Outdoor Recreation and Tourism, 37. DOI: https://doi.org/10.1016/j.jort.2022.10049. 

The health and well-being benefits of nature contact are well known, but inequitably distributed across society. Focusing on the access needs of persons with a disability, the purpose of this study was to systematically examine research on the accessibility of nature-based tourism and recreation spaces outside of urban/community settings. Following a scoping review methodology, this study sought to examine policies, services, physical infrastructures, and regulatory standards intended to enable equitable use of nature-based settings by individuals of all ages and abilities, particularly persons with a disability. In total, 41 relevant studies were identified and analyzed. Findings indicate that there are considerable gaps in the provision of services and information that enable self-determination in the use and enjoyment of nature, and that accessibility in nature-based settings is conceptualized through three interrelated policy/design pathways: the adaptation pathway, the accommodation pathway, and the universal design pathway. As a whole, accessibility policy and standards research specific to natural settings outside of urban/community settings is highly limited.

Management implications: There are growing calls to promote inclusive nature experiences in tourism and recreation spaces outside of community settings. Management of such spaces must reconcile equity concerns with a host of other priorities like environmental conservation. In the case of promoting universal accessibility, few studies offer insight into the detailed standards that must be met to create barrier-free access, let alone how to integrate such standards with other management priorities. Transdisciplinary research partnerships that involve management personnel, environmental and public health researchers, and persons with a disability are needed to identify effective management synergies.

Guedes, L. S., Gibson, R. C., Ellis, K., Sitbon, L., & Landoni, M. (2022, October). Designing with and for People with Intellectual Disabilities. ASSETS ’22: Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility, Article No.: 106. DOI: https://doi.org/10.1145/3517428.3550406.

People with intellectual disabilities often experience inequalities that affect the standard of their everyday lives. Assistive technologies can help alleviate some of these inequalities, yet abandonment rates remain high. This is in part due to a lack of involvement of all stakeholders in their design and evaluation, thus resulting in outputs that do not meet this cohort’s complex and heterogeneous needs. The aim of this half-day workshop is to focus on community building in a field that is relatively thin and disjointed, thereby enabling researchers to share experiences on how to design for and with people with intellectual disabilities, provide internal support, and establish new collaborations. Workshop outcomes will help to fill a gap in the available guidelines on how to include people with intellectual disabilities in research, through more accessible protocols as well as personalised and better fit-for-purpose technologies.

Guffey, E. (Ed.). After Universal Design: The Disability Design Revolution. New York: Bloomsbury Publishing.

How might we develop products made with and by disabled users rather than for them? Could we change living and working spaces to make them accessible rather than designing products that “fix” disabilities? How can we grow our capabilities to make designs more “bespoke” to each individual? After Universal Design brings together scholars, practitioners, and disabled users and makers to consider these questions and to argue for the necessity of a new user-centered design.

As many YouTube videos demonstrate, disabled designers are not only fulfilling the grand promises of DIY design but are also questioning what constitutes meaningful design itself. By forcing a rethink of the top-down professionalized practice of Universal Design, which has dominated thinking and practice around design for disability for decades, this book models what inclusive design and social justice can look like as activism, academic research, and everyday life practices today.

With chapters, case studies, and interviews exploring questions of design and personal agency, hardware and spaces, the experiences of prosthetics’ users, conventional hearing aid devices designed to suit personal style, and ways of facilitating pain self-reporting, these essays expand our understanding of what counts as design by offering alternative narratives about creativity and making. Using critical perspectives on disability, race, and gender, this book allow us to understand how design often works in the real world and challenges us to rethink ideas of “inclusion” in design.

Hamraie, A. (2013). Designing collective access: A feminist disability theory of universal design. In S. Tremain (Ed.), Improving Feminist Philosophy and Theory By Taking Account of Disability [Special Issue]. Disability Studies Quarterly, 33(4). DOI: https://doi.org/10.18061/dsq.v33i4.3871. 

Universal Design (UD) is a movement to produce built environments that are accessible to a broad range of human variation. Though UD is often taken for granted as synonymous with the best, most inclusive, forms of disability access, the values, methodologies, and epistemologies that underlie UD require closer scrutiny. This paper uses feminist and disability theories of architecture and geography in order to complicate the concepts of “universal” and “design” and to develop a feminist disability theory of UD wherein design is a material-discursive phenomenon that produces both physical environments and symbolic meaning. Furthermore, the paper examines ways in which to conceive UD as a project of collective access and social sustainability, rather than as a strategy targeted toward individual consumers and marketability. A conception of UD that is informed by a politics of interdependence and collective access would address the multiple intersectional forms of exclusion that inaccessible design produces.

Hamraie, A. (2016). Universal design and the problem of “post-disability” ideology. Design and Culture: The Journal of the Design Studies Forum, 8(3), 285-309. DOI: https://doi.org/10.1080/17547075.2016.1218714.

Although Universal Design gains popularity as a common sense strategy for crafting built environments for all users, accessibility for disabled people remains a marginal area of inquiry within design practice and theory. This article argues that the tension between accessibility and Universal Design stems from inadequate critical and historical attention to the concept of disability as it relates to discourses of “good design.” This article draws upon critical disability theory to reveal the persistence of “post-disability” narratives and “ideologies of ability” from the eugenics era into the present theory and practice of Universal Design.

Hamraie, A. (2017). Building access: Universal design and the politics of disability. Minneapolis: University of Minnesota Press.

Building Access investigates twentieth-century strategies for designing the world with disability in mind. Illustrated with a wealth of rare archival materials, this book brings together scientific, social, and political histories in what is not only the pioneering critical account of Universal Design but also a deep engagement with the politics of knowing, making, and belonging in twentieth-century United States.

Hamraie, A. (2018). Enlivened city: Inclusive design, biopolitics, and the philosophy of liveability. Built Environments, 44(1), 77-104. DOI: https://doi.org/10.2148/benv.44.1.77. 

Shortly after the United States announced its withdrawal from the Paris climate accords, mayors of global cities committed to addressing climate change via urban-scale projects aimed at promoting liveable, sustainable, and healthy communities. While such projects are taken for granted as serving the common good, this paper addresses the ideological dimensions of planning liveable cities with health promotion in mind. Liveability, I argue, is a normative ideology wherein liveliness and activation perform affective roles, associating urban design methods with feel-good imagined futures while rendering built structures as polemics against disabled and racialized populations. Using Nashville, Tennessee, a mid-sized US city, as a case study, the paper parses the progressive vision of the liveable city from the ideologies, political economies, and development practices that simultaneously activate some lives while excluding others.

Hamraie, A., & Fritsch, K. (2019). Crip technoscience manifesto. In K. Fritsch, A. Hamraie, M. Mills, & D. Serlin (Eds.), Special Section on Crip Technoscience. Catalyst: Feminism, Theory, Technoscience, 5(1), 1-34. DOI: https://doi.org/10.28968/cftt.v5i1.29607. 

As disabled people engaged in disability community, activism, and scholarship, our collective experiences and histories have taught us that we are effective agents of world-building and -dismantling toward more socially just relations. The grounds for social justice and world-remaking, however, are frictioned; technologies, architectures, and infrastructures are often designed and implemented without committing to disability as a difference that matters. This manifesto calls attention to the powerful, messy, non-innocent, contradictory, and nevertheless crucial work of what we name as ‘crip technoscience,’ practices of critique, alteration, and reinvention of our material-discursive world. Disabled people are experts and designers of everyday life. But we also harness technoscience for political action, refusing to comply with demands to cure, fix, or eliminate disability. Attentive to the intersectional workings of power and privilege, we agitate against independence and productivity as requirements for existence. Instead, we center technoscientific activism and critical design practices that foster disability justice.

Hendren, S. (2020). What can a body do? How we meet the built world. New York: Penguin Random House. 

Furniture and tools, kitchens and campuses and city streets—nearly everything human beings make and use is assistive technology, meant to bridge the gap between body and world. Yet unless, or until, a misfit between our own body and the world is acute enough to be understood as disability, we may never stop to consider—or reconsider—the hidden assumptions on which our everyday environment is built.

In a series of vivid stories drawn from the lived experience of disability and the ideas and innovations that have emerged from it—from cyborg arms to customizable cardboard chairs to deaf architecture—Sara Hendren invites us to rethink the things and settings we live with. What might assistance based on the body’s stunning capacity for adaptation—rather than a rigid insistence on “normalcy”—look like? Can we foster interdependent, not just independent, living? How do we creatively engineer public spaces that allow us all to navigate our common terrain? By rendering familiar objects and environments newly strange and wondrous, What Can a Body Do? helps us imagine a future that will better meet the extraordinary range of our collective needs and desires.

Holloway, C. (2019, March-April). Disability interaction (DIX): A manifesto. Interactions, 26(2), 44-49. DOI: https://doi.org/10.1145/3310322. 

“Disability has often spurred designers to create novel technologies that have later become universal; for example, both the typewriter and the commercial email client originated from a need to communicate by blind and deaf people. The design constraints imposed by disability have pushed ingenuity to thrive within the design process. Recent technological advances in artificial intelligence (AI), the Internet of Things, and pervasive computing provide great scope for designers and researchers to explore this symbiosis when considering future innovations for disability, as well as for society at large. Here, we propose a new agenda for harnessing such opportunities; we call it disability interaction (DIX). DIX views disability as a source of innovation, one that can push the boundaries of the possible” (pp. 44-45).

Holloway, C., & Barbareschi, G. (2022). Disability interactions: Creating inclusive innovations [Synthesis Lectures on Human-Centered Informatics (SLHCI) Series]. Cham, Switzerland: Springer. DOI: https://doi.org/10.1007/978-3-031-03759-7. 

Disability interactions (DIX) is a new approach to combining cross-disciplinary methods and theories from Human Computer Interaction (HCI), disability studies, assistive technology, and social development to co-create new technologies, experiences, and ways of working with disabled people. DIX focuses on the interactions people have with their technologies and the interactions which result because of technology use. A central theme of the approach is to tackle complex issues where disability problems are part of a system that does not have a simple solution. Therefore, DIX pushes researchers and practitioners to take a challenge-based approach, which enables both applied and basic research to happen alongside one another. DIX complements other frameworks and approaches that have been developed within HCI research and beyond. Traditional accessibility approaches are likely to focus on specific aspects of technology design and use without considering how features of large-scale assistive technology systems might influence the experiences of people with disabilities. DIX aims to embrace complexity from the start, to better translate the work of accessibility and assistive technology research into the real world. DIX also has a stronger focus on user-centered and participatory approaches across the whole value chain of technology, ensuring we design with the full system of technology in mind (from conceptualization and development to large-scale distribution and access). DIX also helps to acknowledge that solutions and approaches are often non-binary and that technologies and interactions that deliver value to disabled people in one situation can become a hindrance in a different context. Therefore, it offers a more nuanced guide to designing within the disability space, which expands the more traditional problem-solving approaches to designing for accessibility. This book explores why such a novel approach is needed and gives case studies of applications highlighting how different areas of focus—from education to health to work to global development—can benefit from applying a DIX perspective. We conclude with some lessons learned and a look ahead to the next 60 years of DIX.

Howlett, R., Sitbon, L., Hoogstrate, M., Sundeepa Balasuriya, S. (2021, October). Accessible citizen science, by people with intellectual disability In ASSETS ’21: The 23rd International ACM SIGACCESS Conference on Computers and Accessibility 2021 Article No.: 48, 1–3. DOI: https://doi.org/10.1145/3441852.3476558. 

This research explores the conditions and opportunities for citizen science applications to enhance their accessibility to people with intellectual disability (ID). In this paper, we present how the knowledge gathered by co-designing with a group of 3 participants with ID led to a design judged accessible and engaging by another group of 4 participants with ID. We contribute the key elements of that design: static subject, visual engagement, embodiment and social connectedness.

Hudson, W. (2019, March-April). Asperger’s syndrome, autism, and camouflaging: Reduced empathy revisited. Interactions, 26(2), 55–59. DOI: https://doi.org/10.1145/3305356. 

“The autism spectrum has an important role in technology fields. High systemizing skills are obviously very valuable in technological ventures, but the concomitant reduction in empathy raises real risks for interactive systems. We need to better understand and communicate these issues so that staff on the autism spectrum are more likely to be recruited and feel supported in their working environment. At the same time, we should recognize that higher adoption rates of user-centered methods are needed to ensure that users are involved throughout the development process: from early research through to regular usability evaluations” (p. 59).

Ignagni, E., Chandler, E., Collins, K., Darby, A., & Liddiard, K. (2019). Designing access together: Surviving the demand for resilience. Canadian Journal of Disability Studies, 8(4), 293–320. DOI: https://doi.org/10.15353/cjds.v8i4.536.

Together we engaged in a project to co-design and co-create a fictional near-future world that would enable us to interrogate our present techno-social dilemmas.  Accessibility was central to our workshop for the way that access is always central to enacting crip, mad, Deaf, and spoonie[1] communities.  Without access, we cannot meet, discuss, share, struggle, fight, dismantle or create. Crucially, access was tied to our desire to co-create crip near-futures.

[1] The term spoonie refers to those who live with chronic conditions. Miserandino, C. (n.d.). Retrieved from: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Imrie, R. (2011). Universalism, universal design and equitable access to the built environment. Disability and Rehabilitation, 34(10), 873–882. DOI: https://doi.org/10.3109/09638288.2011.624250.

Purpose: The concept of universal design (UD) has acquired global significance and become orthodoxy of what is presented as the very best of design practice. This is despite limited evaluation of the theoretical content of the concept. This article seeks to redress this shortfall in knowledge by providing a critique of the theoretical and conceptual components that underpin the principles of universal design.

Method: Commentary.

Results: The content of UD appears to be reductive and functionalist, with an appeal to discourses of technical flexibility, or the notion that the problems confronting disabled people by poorly designed built environments may be redressed by recourse to technical and management solutions. UD is characterized by its advocation of the marketization of access as the primary means to ensure the accessibility of products, including the built environment. This has the potential to reduce the “right to access” to a right to be exercised through a market presence or transaction. There is also lack of clarity about what advocates of UD understand universalism to be, as illustrated by evidence of some ambivalence towards specialist or particular design solutions.

Conclusions: UD provides a useful, yet partial, understanding of the interrelationships between disability and design that may limit how far inequalities of access to the built environment can be overcome.

Jakupi, A., Morina, G., & Hasimja, D. (2023). Architecture challenges in attaining a complete education cycle for people with disabilities: Sharing experience from Kosovo. Journal of Accessibility and Design for All, 13(1), 94–112. DOI: https://doi.org/10.17411/jacces.v13i1.369.

Background: Education is continuing to develop different academic roles and services to meet the needs of society. The important value of education is more underlined in their built environment when they were supposed to undertake careful designs to avoid non-accessibility among space users. They also aim to create a good, efficient, and safe environment inside their premises. The built environment is a severe share of people with disabilities (PWDs)* attendance and continuation of the educational cycle. Objectives: Exploring the preparedness of the educational built environment in Kosovo for the PWD’s accessibility concerning building design modifications when ensuring adequate education, socialization, and a safe environment. Consequently, it reveals the contrasting ways architects and educational institutions outline and design for PWDs, and the range of doubtful models and approaches they bring to bear upon processes of architectural production and designing for PWDs (Hall et al., 1999). Furthermore, to understand the importance of architecture as one of the main factors influencing the education cycle of PWDs. Finally, and most importantly, how architecture causes this journey to stop. Methods: The descriptive research method’s survey, observation, and case study approach helps investigate the topic more in-depth and multi-sided. The research is conducted in all four educational levels: preschool, elementary school, high school, and higher education institutions. Conclusions: All four educational levels (preschool, elementary school, high school, university/college) showcase more or less the same physical barriers, but what needs to be noted is that the higher education facilities foster more PWDs accessibility than preschool or elementary school. Nevertheless, it is of utmost importance that the first levels of educational facilities have fulfilled the universal design standards, thus not discontinuing the educational cycle from the beginning and creating involuntary isolation and social non-inclusion. As a result, it will further influence thinking and how architects design in their practice besides sharing Kosovo’s experience. The concept deals with the recommendations proposed on two scenarios for the Kosovo relevant institutions, the architect’s community and educational institutions.

Joseph, S., & Namboodiri, V. (2023). Measuring economic benefits of built environment accessibility technologies for people with disabilities. Studies in Health Technology and Informatics, 306, 381-388. DOI: https://doi.org/10.3233/shti230648.

Given the challenges of wayfinding in large indoor built environments, especially for persons with disabilities (PWDs), a new class of accessible technologies called built environment accessible technologies (BEAT) are being developed. Such technologies are envisioned to help achieve product and opportunity parity for PWDs. The impact and adoption of these BEATs depends largely on clear and quantifiable (tangible and intangible) economic benefits accrued to the end-users and stakeholders. This paper describes the results of a survey conducted to measure potential benefits in terms of quality of life and quality of work life (work productivity) by increased accessibility provisions within built environments as it relates to navigation for PWDs and those without disabilities. Results of this work indicate that BEATs have the greatest potential to improve mobility and exploratory activities for people with disabilities, exploratory activities for people without disabilities, and improve job security for everyone.

Kille-Speckter, L., and Nickpour, F. (2022) The evolution of inclusive design: A first timeline review of narratives and milestones of design for disability. In D. Lockton, S. Lenzi, P. Hekkert, A. Oak, J. Sádaba, & P. Lloyd (Eds.), DRS2022: Bilbao, 25 June – 3 July, Bilbao, Spain. DOI: https://doi.org/10.21606/drs.2022.690.

This paper sets out to critically review the history of Inclusive Design on two distinct levels, i.e. the narratives that shape it and the historical milestones which contribute to its evolution. Through an illustrative review of literature and object ethnography, two sets of timelines are outlined. First, a milestone timeline helps establish the chronological evolution of Inclusive Design based on historical milestones and sociocultural perspectives. Second, a narrative timeline helps uncover the underlying narratives around matters of disability, design and inclusivity, and how they evolved. Though identifying historical and emerging shifts in mentality, the timeline review of narratives and milestones offer granular as well as holistic views on Inclusive Design as a field in need of more critically reflective approaches – conceptually and in practice.

Luchs, C. (2021). Graduate Member Musings: Considering neurodiversity in learning design and technology. TechTrends, 65, 923–924. DOI: https://doi.org/10.1007/s11528-021-00667-9. 

“Following in the footsteps of the Culture Learning, and Technology Graduate Student Collective’s (Clark-Stallkamp et al., 2021) focus on how positionality affects our design and our field, this article seeks to highlight the often overlooked neurotypical positionality in our LDT design and research. This call for critical theories, models and practices that question or replace the dominant deficit narrative is especially important considering the rapidly growing number of students with disabilities our institutions are serving (Clouder et al., 2020). Much of our learning design is based on what we have traditionally considered normal (neurotypical) learning rates of reading, comprehension, and recall. However, as we become more inclusive organizations and embrace our unique intersectionalities, what happens when more and more of our students, staff, and colleagues do not identify as neurotypical?”

McDonald, K., Schwartz,. A., & Fialka-Feldman, M. (2021). Belonging and knowledge production: Fostering influence over science via participatory research with people with developmental disabilities. In J. L. Jones & K. L. Gallus (Eds.), Belonging and resilience in individuals with developmental disabilities: Community and family engagement [Emerging Issues in Family and Individual Resilience Series] (pp. 97-118). Cham, Switzerland: Springer. DOI: https://doi.org/10.1007/978-3-030-81277-5_7. 

Research with people with developmental disabilities has a bleak history, marred by abuse and exclusion. In order to enhance the ability of science to promote the quality of life and human rights for all, we must transform relationships between scientists and individuals with developmental disabilities. Authentically partnering with community researchers with developmental disabilities is an ethical approach to enhance research quality and social validity. This chapter discusses historical and ethical issues related to previous research, followed by actions scientists without developmental disabilities can take to foster belonging of researchers with developmental disabilities in research partnerships, and beyond. Scientists can begin by developing a foundation in disability history and rights and becoming an ally and advocate for inclusion. Long-term and mutual relationships are critical for research partnerships, and full and authentic inclusion are facilitated by structures that show respect and foster engagement, participation, and shared decision-making. Additionally, transformative scientific relationships require ongoing reflective practice.

Mikulak, M., Ryan, S., Bebbington, P., Bennett, S., Carter, J., Davidson, L., Liddell, K., Vaid, A., & Albury, C. (2022, March). ‘’Ethno…graphy?!? I can’t even say it”: Co-designing training for ethnographic research for people with learning disabilities and carers. British Journal of Learning Disabilities, 50(1), 52-60. DOI: https://doi.org/10.1111/bld.12424. 

Background: There is a strong ethical case and an urgent need for more participatory research practices in disability research but a lack of resources to support this. It is important to involve people with learning disabilities and carers at all stages, including when designing training for co-research.

Methods: We co-developed training materials to support people with learning disabilities and carers to work as ethnographic co-researchers and for academic researchers to facilitate co-research. We focused on what people with learning disabilities and carers thought was important to learn.

Findings: Whilst not all types of research methods are easy to democratise, ethnographic observation is a research method that lends itself well to participatory co-research.

Conclusions: For people to be able to meaningfully participate, research processes need to become more accessible and transparent. Training that considers the needs and priorities of people with learning disabilities and carers and addresses the confidence gap is key for meaningful co-research.

Accessible Summary

  • We are a team of academic researchers, people with learning disabilities and carers. We worked together to design training materials for people with learning disabilities and carers to work as co-researchers on research projects.
  • The training was for doing a type of research called ethnography. When you do ethnography, you spend time with people to learn about their lives.
  • In this article, we describe what we did and what we learnt.
  • We think more people with learning disabilities and carers should be involved in research but many do not have the confidence to do it. Training can help with that.
  • We also think that ethnography is a type of research that can be easier to do than other types of research. This is because ethnography uses the skills lots of us already have the following: watching, listening and talking to people.

Mondelli, M,. & Justice, J. (2023). Aesthetic In-Access: Notes from a CripTech Metaverse Lab. Leonardo 2023; DOI: https://doi.org/10.1162/leon_a_02491.

“Metaverse” technologies, such as spatial audio, virtual reality (VR), and augmented reality (AR), present new possibilities for disabled artists. To explore how artists use metaverse technologies – as well as the frictions that inhibit access – the authors describe the events of “CripTech Metaverse Lab,” which invited a cohort of disabled artists for a three-day workshop featuring metaverse experiences and a speculative design lab. Observing how participants creatively navigated these encounters, we introduce “aesthetic in-access” as a shared praxis developed by disabled users that transforms barriers to access into artistic expression. In doing so, we outline a metaverse future that centers disabled expression and joy.

Moore, A., Keller, J. S., Reilly-Sanders, E., & Williamson, B. (2022). Towards an accessible crit: Disability and diversity in architectural reviews. In G. Napell & S. Mueller (Eds.), 2022 AIA/ACSA Intersections Research Conference: Resilient Futures, October 6-7, 2022 (pp. 16-23). Washington, DC: Association of Collegiate Schools of Architecture (ASCA). DOI: https://doi.org/10.35483/ACSA.AIA.Inter.22.2.

The United Nations and many of the world’s governments define accessibility in the built environment as a human right, and U.S. architectural degree accreditation requires that accessible design be included in architectural degree curricula. However, architecture programs themselves have rarely been examined for their (in)accessibility. Looking at the architectural critique, or the crit, we note barriers for people with physical, sensory, mental, and cognitive disabilities including uncomfortable seating, long sessions with few breaks, and high-pressure extemporaneous speaking. These practices often go unquestioned, but the inaccessibility of crits is part of an overall culture of discouragement and discrimination for anyone who does not fit traditional expectations, and particularly people with disabilities. An accessible crit consciously addresses the range of abilities and needs that may be present among both students and critics. Here we highlight four different perspectives on accessibility: historical representation of disabled people in architecture training, diversity and equity-focused practices in critiques, applying constructivist pedagogy to architectural critiques, and accessibility as critical to sustainability and resilience. Each perspective offers opportunities for transforming the traditional crit to better meet the needs of participants while furthering architectural education. Disability is rarely included in professional discussions of diversity; for example, the American Institute of Architects (AIA) keeps statistics on members’ race, ethnicity, and gender, but not disability. Meanwhile, statistics on college and graduate students show a significant portion who experience disability, including physical and sensory disabilities along with the “invisible” disabilities of mental illness, neurodiversity, and chronic illness. Since 2020 the physical and mental stresses of higher education have been even more apparent, as well as related stresses of both in-person and remote learning during a pandemic. Rather than returning to “normal” operations that present barriers, we propose taking this moment to re-examine one of the most fundamental practices in architectural education, and using it to leverage a more equitable and productive learning environment.

 

Motahar,  T., Brown, N., Stampfer Wiese, E., & Wiese, J. (2024). Toward building design empathy for people with disabilities using social media data: A new approach for novice designers. In DIS ’24: Proceedings of the 2024 ACM Designing Interactive Systems Conference (pp. 3145-3160). New York: Association for Computing Machinery. DOI: https://doi.org/10.1145/3643834.3660687.

Design empathy is a core HCI concept for understanding user perspectives in design processes. Although researchers advocate for leveraging design empathy in the design of assistive technology, educating novice designers about this is challenging; this is especially true in HCI classrooms when the target population includes people with disabilities, and students who do not have a disability are less aware of the diversity of disability. To help students better understand disability experiences, HCI education often adopts “be-like” (mimicking disabled-experience) approaches. However, accessibility researchers advocate adopting the “be-with” approach—learning about other’s experiences through companionship. To mitigate the logistical challenges of being-with in a classroom setting, we developed a “be-connected” approach, which facilitates learning about the disability experience through the narratives of real individuals. Using social media posts from a spinal cord injury subreddit, we developed and deployed an activity aiming to develop design empathy. Our qualitative evaluation showed a notable transformation in students’ design thinking process, suggesting an opportunity to leverage social media data to learn about disabled perspectives and develop design empathy.

Murray, V. (2019, September). Co-producing knowledge: Reflections on research on the residential geographies of learning disability. In L. Holt, J. Jeffries, E. Hall & A. Power (Eds.), Geographies of Co-production: Learning from Inclusive Research Approaches at the Margins [Special Issue]. Area, 51(3), 423-432. DOI: https://doi.org/10.1111/area.12491. 

Most adults are able to take some control over where they live and are able to reflect on their migration histories, those places where they have lived and worked, and those places where they might aspire to live in the future. These life-altering decisions have been negotiated either autonomously or in conjunction with significant others in their lives. For some adults, most notably those with learning disabilities, these life decisions are partially, if not wholly, made for them by others. It is therefore the aim of this paper to uncover more about the decision-making opportunities afforded to people with learning disabilities regarding their home-spaces as they navigate “moving landscapes” that they have perhaps not envisaged for themselves. The paper identifies the need for a co-production of knowledge that recognises alternative methods of communication and participation in research, which seeks to de-mystify the authentic, and perhaps mundane, realities of living with a learning disability. Indeed, some geographers have questioned the integrity of research that fails to allow those with learning disabilities to control at least some part of the process. And so, by embracing lives that are “differently normal,” the paper seeks to challenge the role of the expert by engaging with methods that allow the distinction between researched and researcher to become blurred, allowing the voice of the learning-disabled individual clearly to be heard. Finally, the paper will discuss the disconnect between intended methodological approaches and those undertaken “in the field.”

National Endowment for the Arts. (2021, October). Disability design: Summary report from a field scan. Washington, DC: National Endowment for the Arts’ Accessibility Office in collaboration with the Design Program.

To better understand current trends in the disability design field, the NEA commissioned a field scan, which included a review of recent research and news articles as well as interviews with key subject matter experts. This report provides a summary of the field scan, sharing current trends and making recommendations for disability design in public spaces and for the human body and mind.

Also available is a podcast episode featuring an interview between Joshua Halstead, researcher for the report and Grace Jun, CEO of Open Style Lab.

Nilsson, E.M., Lundälv, J., & Eriksson, M. (2022). Design opportunities for future development of crisis communication technologies for marginalised groups – Co-designing with Swedish disability organisations. In M. Fabri & N. Newbutt (Eds.), Designing Enabling Technologies for Marginalised Groups [Special Issue]. Journal of Enabling Technologies, 16(3), 159-171. DOI: https://doi.org/10.1108/JET-01-2022-0006.

Purpose: The purpose is to firstly, provide an example of how voices of people with various disabilities (motor, visual, hearing, and neuropsychiatric impairments) can be listened to and involved in the initial phases of a co-design process (Discover, Define). Secondly, to present the outcome of the joint explorations as design opportunities pointing out directions for future development of crisis communication technologies supporting people with disabilities in building crisis preparedness. The study was conducted during the Covid-19 pandemic.

Design/methodology/approach: The study assumes a design research approach including a literature review, focus group interviews, a national online survey and collaborative (co-)design workshops involving crisis communicators and representatives of disability organisations in Sweden. The research- and design process was organised in line with the Double Diamond design process model consisting of the four phases: Discover, Define, Develop and Deliver, whereof the two first phases are addressed in this paper.

Findings: The analysis of the survey data resulted in a series of challenges, which were presented to and evaluated by crisis communicators and representatives from the disability organisations at the workshops. Seven crisis communication challenges were identified, for example, the lack of understanding and knowledge of needs, conditions and what it means to build crisis preparedness for people with disabilities, the lack of and/or inability to develop digital competencies and the lack of social crisis preparedness. The challenges were translated into design opportunities to be used in the next step of the co-design process (Develop, Deliver).

Originality/value: This research paper offers both a conceptual approach and empirical perspectives of design opportunities in crisis communication. To translate identified challenges into design opportunities starting with a “How Might We”, creates conditions for both researchers, designers and people with disabilities to jointly turn something complex, such as a crisis communication challenge, into something concrete to act upon. That is, their joint explorations do not stop by “knowing”, but also enable them to in the next step take action by developing potential solutions for crisis communication technologies for facing these challenges.

O’Brien, P. (2022). Inclusive Research: Is the Road More or Less Well Travelled? [Special Issue]. Social Sciences, 11(3).

‘In this Special Issue how far have we come in terms of living up to the principles of inclusive research captured in the disability slogan, “Nothing about us without us”, or more pithily, “No researching about us without us” will be explored. The foundational principles of inclusive research were introduced in 2003 by Walmsley and Johnson with outcomes aimed at people with intellectual disability having ownership over the “what” and the “how “of the research agenda. The purpose of this Special Issue on inclusive research is to capture internationally, “Where have we come to?” and “Where do we need to go?” Such questions are relevant now that it has been 18 years since Johnson and Walmsley (2003) first introduced the inclusive research paradigm in their text, Inclusive research with people with learning disabilities: past present and future.

While there has been much growth in people with intellectual disability becoming visible and vocal as researchers across a range of content and methodologies (Jones et al, 2020), there has also been ongoing debate and development associated with Johnson and Walmsley’s foundational principles. Bigby and Frawley (2014a, 2014b) illustrated a three-component framework of inclusive research which ranged from an advisory role, to that of collaboration between co-researchers with intellectual disability and those without, to that of researchers with intellectual disability leading and controlling the research process. Whereas Nind and Vinha (2014) and Riches et al (2017) identified a less divided landscape placing importance on inclusive research being characterised by shared learning, mutuality, and reciprocity.    Riches et al heightened the value of such characteristics by reporting a sense of belonging that came from being a member of an inclusive research team.

Johnson and Walmsley re-joined the debate in 2017 updating their original definition to additionally guide a second generation of inclusive researchers to work towards social change, campaigning for others, as well as standing with others on issues important to them (Walmsley, Strnadova & Johnson, 2018). Beyond the characteristics of the second-generation Milner and Frawley (2019) have called for space for a third wave of inclusive research where the focus is placed on research praxis that is self-directed by the researcher with the lived experience of disability. Such methodology aims to circumvent “othering” that can come from the unquestioned expectation that co-researchers with intellectual disability will fit into the mode of traditional research data collection methods.

The Special Issue promotes inclusive research as a paradigm that has continued to promote transfer of power from those that were once the “researched” to being and becoming the “researchers”. This issue draws upon the work of researchers who have adopted this paradigm to redress the exclusion of people with intellectual disability as partners in the research process. Apart from contributing to the journal in an area of their own interest they reflect as research practitioners on how their involvement in inclusive research has developed over the years. Also, this issue provides opportunities for all members of inclusive research teams to co-author articles through use of accessible innovative contributions. Publishing for authors with intellectual disability has proved challenging (Riches et al, 2020) and this Special Issue supports digital contributions such as video abstracts, video interviews, PowerPoint slide sets and photographs. Such innovation is aimed at bridging the divide between those inclusive research team members that publish and those who do not. Further all articles are cost neutral to bridge the economic gap between salaried and non-salaried researchers. Articles assigned to this special issue include:

  • Inclusive Research in Health, Rehabilitation and Assistive Technology: Beyond the Binary of the ‘Researcher’ and the ‘Researched’
  • Relationships of People with Intellectual Disabilities in Times of Pandemic: An Inclusive Study 
  • A Closer Look at the Quest for an Inclusive Research Project: ‘I Had No Experience with Scientific Research, and then the Ball of Cooperation Started Rolling’
  • On the Road Together: Issues Observed in the Process of a Research Duo Working Together in a Long-Term and Intense Collaboration in an Inclusive Research Project
  • Reflections on Working Together in an Inclusive Research Team
  • Reflecting on the Value of Community Researchers in Criminal Justice Research Projects
  • Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities
  • Inclusive Research and the Use of Visual, Creative and Narrative Strategies in Spain
  • How Being a Researcher Impacted My Life
  • Experiences of Inclusive Action and Social Design Research with Social Workers and People with Intellectual Disabilities
  • Graduating University as a Woman with Down Syndrome: Reflecting on My Education
  • Reflections on the Implementation of an Ongoing Inclusive Research Project
  • Being an Inclusive Researcher in a National Consultation Exercise—A Case Study

Oswal, S. K. (2022). Reshaping the philosophical backdrop for disability-inclusive user experience design: The case of a socially-aware, collaborative, international translation project. In IEEE International Professional Communication Conference (ProComm), Limerick, Ireland (pp. 358-363). DOI: https://doi.org/10.1109/ProComm53155.2022.00073.

This paper extends Bruce Maylath’s translation work to incorporate the values of disability and accessibility as an essential aspect of language work in a digitally-restructured, international industry aimed at supplying on-call translations using online tools integrated in websites and search engines, as well as, the traditional translations. In this paper, first, I briefly discuss a virtual, international collaboration among three classes focusing on the teaching of accessibility in the context of business planning and website design as an example of integrated accessibility pedagogy. In the second half of the paper, I describe the design of a new collaboration that takes Maylath’s translation-based, international collaboration project in the direction of disability inclusion in translation while inviting instructors in our field to participate in virtual, collaborative translation partnerships that would provide a platform for inclusive translation processes and products. The partnership’s aim will be to engage student teams in questions of access for disabled participants in translation work for generating accessible user experiences. Instead of indulging in the rhetoric of social justice or service learning, this approach asks our field to develop professional competency in accessible translation processes and design that honors the rights of users with disabilities to access information on par with all other users, enjoy meaningful and inclusive design experiences, and accept them as participant users and co-designers of translations.

Özdemir, Ş., & Sungur, A. (in press). A model proposal for university campuses in the context of inclusive design. A|Z ITU Journal of the Faculty of Architecture Articles in Press: ITUJFA-92342. DOI: https://doi.org/10.5505/itujfa.2022.92342. 

Urban public spaces should be shaped according to the need as they occupy an important place in urban development. The campuses serve as a small city due to the facilities and social environment they have and thus emerge as important public spaces. Campus areas affect our attitudes towards education and should be tailored to the needs and designed to cover all campus users. As a modern design approach, the inclusive design philosophy; To create quality spaces by increasing the livability and quality of university campuses as a public space, and to spread this philosophy to the whole society in their professional lives by ensuring that this design concept is placed on university students, who are the main campus users, who will provide the development of the society. It is to determine the problems faced by the users in the university campuses, research the approaches and examples that will allow all users to access the campus equipment, use this equipment as they wish, and develop solutions for the problems encountered. This study aims to create an evaluation model to create an inclusive campus environment. The creation of the checklist, which was prepared as a priority, as detailed in the field study. The field study continued with the implementation and results of the checklist in the selected Davutpaşa campus. The fieldwork carried out in the Davutpaşa campus was divided into four categories: psycho-social arrangements, administrative arrangements, outdoor and indoor physical arrangements.

Pérez Liebergesell, N.,Vermeersch, P., & Heylighen, A. (2021). Urban chandelier: How experiences of being vision impaired inform designing for attentiveness. Journal of Interior Design, 46(1), 73-92. DOI: https://doi.org/10.1111/joid.12192.

Prevailing conceptions of disability in architectural discourse give rise to the devaluing of disabled people’s lived experiences. However, several studies in architecture and disability studies show how disability experience may lead to a careful attentiveness toward the qualities of the built environment that are relevant for design. Using focused ethnography, we examine how architect William Feuerman’s disruptive vision impairment restructured his attention. The insights gained from his experience were incorporated conceptually into his design practice, and the resulting design principles were realized in one of his office’s projects—Urban Chandelier, a design intervention positioned in an urban installation. Feuerman’s experiences encouraged him to deliberately introduce disruption into his design, aiming not to disable everyone, but to make passers-by attentive to their surroundings. He re-organizes people’s modes of attention through the distinct visual qualities of architecture, generating new meaning, in a similar manner as the stroke that affected his attention. We conclude that considering disabled people’s lived experiences demonstrates potential in designing artifacts experientially interesting for a broad population, including but not limited to disabled people.

Pineda, V. S. (Ed.). (2022). Universally Accessible Public Spaces for All [Special Issue]. The Journal of Public Space, 7(2).

At the occasion of the 10th session of the World Urban Forum in Abu Dhabi (2020), the World Blind Union (WBU) and City Space Architecture committed to develop and publish a special issue of The Journal of Public Space with a specific focus on universally accessible public spaces. This voluntary commitment was included in the Forum’s outcome declaration, the Abu Dhabi Declared Actions (2021), intended to support accelerating the implementation of the New Urban Agenda (NUA) and urban dimension of the Sustainable Development Goals (SDGs) during the Decade of Action. In particular this Special Issue is contributing to Goal 17 – Strengthen the means of implementation and revitalize the global partnership for sustainable development, and its outcomes are focusing on Goal 11 – Make cities and human settlements inclusive, safe, resilient and sustainable.

Today, more than half of the world’s population live in cities, 15 percent of them being persons with disabilities. By 2050, 70 percent of the world’s population will live in urban communities including over two billion persons with disabilities and older persons requiring inclusive and accessible infrastructure and services to live independently and participate on an equal basis in all aspects of society. Local and regional governments, and other key urban stakeholders, face immense pressure to adapt strategies, policies, and urban planning and design practices to fully respond to the rights and needs of all persons with disabilities and intersecting social groups.

Pullin, G. (2009). Design meets disability. Cambridge, MA: The MIT Press. 

How design for disabled people and mainstream design could inspire, provoke, and radically change each other.

Eyeglasses have been transformed from medical necessity to fashion accessory. This revolution has come about through embracing the design culture of the fashion industry. Why shouldn’t design sensibilities also be applied to hearing aids, prosthetic limbs, and communication aids? In return, disability can provoke radical new directions in mainstream design. Charles and Ray Eames’s iconic furniture was inspired by a molded plywood leg splint that they designed for injured and disabled servicemen. Designers today could be similarly inspired by disability.

In Design Meets Disability, Graham Pullin shows us how design and disability can inspire each other. In the Eameses’ work there was a healthy tension between cut-to-the-chase problem solving and more playful explorations. Pullin offers examples of how design can meet disability today. Why, he asks, shouldn’t hearing aids be as fashionable as eyewear? What new forms of braille signage might proliferate if designers kept both sighted and visually impaired people in mind? Can simple designs avoid the need for complicated accessibility features? Can such emerging design methods as “experience prototyping” and “critical design” complement clinical trials?

Pullin also presents a series of interviews with leading designers about specific disability design projects, including stepstools for people with restricted growth, prosthetic legs (and whether they can be both honest and beautifully designed), and text-to-speech technology with tone of voice. When design meets disability, the diversity of complementary, even contradictory, approaches can enrich each field.

Purcell, C., Fisher, K. R., Robinson, S., Meltzer, A., & Bevan, N. (2019, September). Co-production in peer support group research with disabled people. In L. Holt, J. Jeffries, E. Hall & A. Power (Eds.), Geographies of Co-production: Learning from Inclusive Research Approaches at the Margins [Special Issue]. Area, 51(3), 405-414. DOI: https://doi.org/10.1111/area.12441. 

Peer support action research is a co-production method used by groups of people with a shared experience, in order to generate knowledge and mutual assistance. This paper analyses co-production experiences from a recent Australian research project, which formed peer support groups to explore how disabled people were managing their transition to self-directed support. Using the project as a case study and applying a community participation framework derived from social geography, this paper addresses questions about which collaborative mechanisms strengthen peer support research so that the research process and outputs benefit each of the participants involved. The project used a mixed-method, co-production approach. University researchers formed research partnerships with disability community organisations to support the research activity in each Australian state. The community organisations formed peer support groups, facilitated the groups and communicated group processes and findings to the university researchers. The group members and facilitators decided what they wanted to do in the group and how to do it. The academics provided research support, training, a topic guide and resources for group activities. All participants reflected on challenges and lessons learnt and modified the project as it progressed. Both the methods and findings have implications for peer support as co-productive research. The process enhanced the research capacity of the participants, disability community and academics, and strengthened peer support, advocacy and confidence about self-directed support. The findings from the peer support groups about their transition to self-directed support demonstrated their preference for, and trust in, peers as information sources. The regular collective reflections with the facilitators produced an additional level of data collection and analysis that enhanced the quality of the co-production, enabling greater participant control over design and knowledge generation.

Race, L., James, A., Hayward, A., El-Amin, K., Gold Patterson, M., & Mershon, T. (2021, October). Designing sensory and social tools for neurodivergent individuals in social media environments. In ASSETS ’21: The 23rd International ACM SIGACCESS Conference on Computers and Accessibility Article No.: 61, 1–5. DOI: https://doi.org/10.1145/3441852.3476546. 

Sensory guides and social narratives are learning tools that provide sensory and social support to neurodivergent individuals. These tools—and their design guidelines—have historically been developed for physical environments, such as museums and classrooms. They lack support for social media environments, where sensory stimuli and social contexts can be complex and uncertain. We address these challenges by designing a novel social media sensory guide and social narrative, specifically adapted for social media interaction. We leverage our use case, Twitter Spaces—an audio-only conversation feature in beta. The goal of this pilot study is to determine whether neurodivergent users want sensory guides and social narratives adapted for social media, and if users find them helpful in setting expectations for social media interaction. We evaluate these tools with eight neurodivergent Twitter users, using tasks and thinking aloud. Results indicate a strong potential for adoption of both tools among neurodivergent individuals to reduce overstimulation in social media environments.

Rieger, J., & Rolfe, A. (2021, May). Breaking barriers: Educating design students about inclusive design through an authentic learning framework. The International Journal of Art & Design Education, 40(2), 359-373. DOI: https://doi.org/10.1111/jade.12348. 

Current studies in design education suggest that students and educators base their designs on what they already know about themselves and their peers, or on stereotypical notions of others. This article presents a critical examination of a pedagogical approach employed in several architecture and interior design studios to determine how best to develop student understanding of how to design for real users and users with abilities different from themselves. This authentic learning approach with spatial design students and teachers from the School of Design, Queensland University of Technology, Australia and with people with differing abilities, used qualitative and quantitative questionnaires, student journals and design studio projects to create a multimodal data set. While there are no simple conclusions, or easy answers to unravel the complexity in creating inclusive designs, our findings point towards enabling new engagements and knowledge processes and scaffolding these activities around authentic learning, so that design students and educators can begin to understand the differing ways of designing for/with people with disabilities. The significance of this research is that it opens up new approaches for teaching design students about inclusive design beyond fake personas, building codes and anthropometric data, and provides evidence of the need for a more holistic, authentic and scaffolded approach.

Safari, M.C., Wass, S. and Thygesen, E., 2021. ‘I got to answer the way I wanted to’: Intellectual disabilities and participation in technology design activities. Scandinavian Journal of Disability Research, 23(1),192–203. DOI: http://doi.org/10.16993/sjdr.798. 

User involvement in technology design processes can have positive implications for the designed service, but less is known about how such participation affects people with intellectual disabilities. We explored how 13 individuals with intellectual disabilities experienced participation in the design of a transport support application. The study is based on qualitative interviews, photovoice interviews, participant observations, and Smileyometer ratings. A thematic analysis generated the following themes: a sense of pride and ownership, an experience of socialization, and a sense of empowerment. The findings suggest that participation in design activities is a primarily positive experience that develops the participants’ skills. However, experiences such as boredom may occur. The variability within the experiences of the participants show that it is crucial to be aware of individuality, preferences, and personal interests when designing with people with intellectual disabilities.

Sánchez, F. (2018). Enabling geographies: Mapping campus spaces through disability and access. Pedagogy, 18(3), 433–456. DOI: https://doi.org/10.1215/15314200-6936867. 

This article discusses the advantages of asking students to consider issues of access and disability as they map campus spaces. Putting place-based and mapping pedagogy in conversation with scholarship on disability, I propose that having students learn to better account for different uses of space can help them consider the ideologies that shape spaces.

Seale, J., Colwell, C., Coughlan, T., Heiman, T., Kaspi-Tsahor, D., & Olenik-Shemesh. D. (2021. March). ‘Dreaming in colour’: disabled higher education students’ perspectives on improving design practices that would enable them to benefit from their use of technologies. Education and Information Technologies, 26(2), 1687–1719. DOI: https://doi.org/10.1007/s10639-020-10329-7. 

The focus of this paper is the design of technology products and services for disabled students in higher education. It analyses the perspectives of disabled students studying in the US, the UK, Germany, Israel and Canada, regarding their experiences of using technologies to support their learning. The students shared how the functionality of the technologies supported them to study and enabled them to achieve their academic potential. Despite these positive outcomes, the students also reported difficulties associated with: i) the design of the technologies, ii) a lack of technology know-how and iii) a lack of social capital. When identifying potential solutions to these difficulties the disabled students imagined both preferable and possible futures where faculty, higher education institutions, researchers and technology companies are challenged to push the boundaries of their current design practices.

Siregar, H. F. M. (2024). Exploring the Relationship Between Media Use and Resilience in the context of green communities. IOP Conference Series: Earth and Environmental Science, Volume 1404, International Symposium and Workshop on Sustainable Buildings, Cities and Communities (SBCC) 2024 27/02/2024 – 29/02/2024 Bandung, Indonesia. DOI: https://doi.org/10.1088/1755-1315/1404/1/012045.

Everyone has a relationship with the spatial space they occupy, this study investigates the dynamic relationship between individuals’ media use patterns and their spatial orientation in a community, the evolving media landscape and people’s mobility patterns have a significant influence on green community and resilience. This study seeks to explore the different effectiveness of vertically and horizontally moving media such as stairs, lifts, ramps, escalators and single loaded and double loaded corridors, the main objective is to investigate the relationship between place media consumption, mobility patterns, and development on sustainable behaviour and personal resilience, a methodological approach will be used by examining the comparison between media use and resilience levels to explore the influence of vertically and horizontally moving media on green community attitudes. The findings are expected to reveal interactions between media users with varying mobility abilities, people’s mobility patterns, green community values, and resilience that impact urban planning, media design, and evolving communities. Understanding the relationship between how people move both horizontally and vertically with green communities and resilience is crucial in promoting sustainable development and environmental behaviour in the context of evolving media landscapes and human mobility.

Skillington, T., & Kirsch, J. M. (2024). Assessing inequalities in access to the city’s green and blue spaces through the experiences of its residents. Urban Resilience and Sustainability, 2(3), 272-288.DOI: https://doi.org/10.3934/urs.2024014

We report on the findings of a qualitative research study exploring the benefits to mental, physical, and social well-being of regular interaction with the city’s green and blue spaces using a walking interview method to gauge the views of fifty frequent visitors to the city’s parks. This was followed by a second phase of research consisting of four focus groups exploring the experiences of those whose access to the city’s green and blue spaces is restricted, noting the effects of these limitations on their general well-being. Despite government-backed urban sustainable redesign initiatives to promote greater access to the city’s biodiversity, its elderly, disabled, and poorer socio-economic communities continue to encounter restrictions regarding their access to its green and blue spaces. By highlighting these issues, our aim is to show how a partial membership of the city’s sustainable development plan is enacted (i.e., a simultaneous inclusion of all community members rhetorically and an exclusion of the needs of many in practice) and reinforced in ways that reproduce socially embedded patterns of inequality. It calls for a more sociologically grounded analysis of the persistence of such inequalities as an important appendage to current discourse on the restorative benefits of the ‘15-minute city’ and as a corrective to current public participation measures that fail to incorporate lived experiences of unequal access to the city’s nature. It proposes a framework that addresses more effectively the distributive, recognition, and procedural dimensions of inclusive, sustainable city living.

Stephens, L., Smith, H., Epstein, I., Baljko, M., Mcintosh, I., & Dadashi, N. (2023). Accessibility and participatory design: time, power, and facilitation. CoDesign: International Journal of CoCreation in Design and the Arts. DOI: https://doi.org/10.1080/15710882.2023.2214145.

This paper documents the goals, techniques, and outcomes of nine interventions designed to improve the accessibility of a design charette (DC). These interventions focused on Time, Power, and Facilitation and were developed based on critiques found in design literature, critical disability scholarship, and the lived expertise of disabled people. Data was collected through recording activities and outputs, recorded observations, and elicited feedback. We found that adjusting time, which is essential for access, was difficult and required trade-offs. We also suggest that the presence of a ‘vibes watch’ facilitation role to monitor participation frequency, emotional tone, and power dynamics can be useful to address uneven power relations, caucusing can also be valuable but should be used at specific moments. Non-neutral facilitation, anti-oppression training, and regular reflection can help facilitation/design teams identify and address exclusionary practices. Technology can aid but also constrain access. Finally, despite all interventions, access remains a site of friction and political choices. Stakeholders continue to participate in different and not always equally valued ways, so secondary analysis is useful for understanding charette products or outputs.

Smith, D. (2018). Architectural sites of discrimination: Positive to negative. In K. Ellis, R. Garland-Thomson, M. Kent, & R. Robertson (Eds.), Manifestos for the Future of Critical Disability Studies Vol. 1 (pp. 142-155). New York: Routledge. DOI: https://doi.org/10.4324/9781351053341. 

Architecture and interior settings are important aspects of everyday life for people with disabilities. An environmental situation consists of the contextually located architectural envelope, the interior – as well as constituent parts such as furniture – as well as its occupants. The physical environment can be an enabler for those who have impairments – the environmental concepts of space and place are thus implicated in the discourse of disability. Architecture and interior settings are important aspects of everyday life for people with disabilities. Places where author reside, study, shop, recuperate and play provide a multitude of possibilities for each and every one of them. Concurrently, these same places are sites of differentiation and discrimination – opportunities to interpret and judge are inherent. In the field of design for people with disabilities, these assumptions and expectations are underpinned by the same principles, and are just as important.

Spektor., F., & Fox, S. (2020, December). The ‘working body’: Interrogating and reimagining the productivist impulses of transhumanism through crip-centered speculative design. In S. Moran (Ed.), The Somatechnics of Critical Design [Feature Issue]. Somatechnics, 10(3), 327-354. DOI: https://doi.org/10.3366/soma.2020.0326. 

Appeals to ‘nature’ have historically led to normative claims about who is rendered valuable. These understandings elevate a universal, working body (read able-bodied, white, producing capital) that design and disability studies scholar Aimi Hamraie argues ‘has served as a template […] for centuries’ (2017: 20), becoming reified through our architectural, political, and technological infrastructures. Using the framing of the cyborg, we explore how contemporary assistive technologies have the potential to both reproduce and trouble such normative claims. The modern transhumanism movement imagines cyborg bodies as self-contained and invincible, championing assistive technologies that seek to assimilate disabled people towards ever-increasing standards of independent productivity and connecting worth with the body’s capacity for labor. In contrast, disability justice communities see all bodies as inherently worthy and situated within a network of care-relationships. Rather than being invincible, the cripborg’s relationship with technology is complicated by the ever-present functional and financial constraints of their assistive devices. Despite these lived experiences, the expertise and agency of disabled activist communities is rarely engaged throughout the design process. In this article, we use speculative design techniques to reimagine assistive technologies with members of disability communities, resulting in three fictional design proposals. The first is a manual for a malfunctioning exoskeleton, meant to fill in the gaps where corporate planned obsolescence and black-boxed design delimit repair and maintenance. The second is a zine instructing readers on how to build their own intimate prosthetics, emphasizing the need to design for pleasurable, embodied, and affective experience. The final design proposal is a city-owned fleet of assistive robots meant to push people in manual wheelchairs up hills or carry loads for elderly people, an example of an environmental adaptation which explores the problems of automating care. With and through these design concepts, we begin to explore assistive devices that center the values of disability communities, using design proposals to co-imagine versions of a more crip-centered future.

Spiel, K. (2021). The bodies of TEI – Investigating norms and assumptions in the design of embodied interaction. In TEI’21: ACM International Conference on Tangible, Embedded and Embodied Interaction, Feb 14–17, 2021, Salzburg, Austria (pp. 1-19). New York: ACM. DOI: https://doi.org/10.1145/3430524.3440651. 

In the few decades since the first mainframe computers, computing technologies have grown smaller, and more pervasive, moving onto and even inside human bodies. Even as those bodies have received increased attention by scholars, designers, and technologists, the bodily expectations and understandings articulated by these technological artefacts have not been a focus of inquiry in the field. I conducted a feminist content analysis on select papers in the proceeding of the ACM International Conference on Tangible, Embedded and Embodied Interaction (TEI) since its inception in 2007. My analysis illustrates how artefacts are implicitly oriented on unmarked bodily norms, while technologies designed for non-normative bodies treat those as deviant and in need of correction. Subsequently, I derive a range of provocations focused on material bodies in embodied interaction which offer a point of reflection and identify potentials for future work in the field.

Spiel, K., & Angelini, R. (2022). Expressive bodies engaging with embodied disability cultures for collaborative design critiques. In Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS ’22), Article 7, 1–6. New York: Association for Computing Machinery. DOI: https://doi.org/10.1145/3517428.3551350.

In our experience as researchers engaging with non-academic audiences, we observed that it remains a challenge to receive direct and critical feedback from participants. This is particularly amplified in the context of disabilities even if the researchers identify themselves as disabled given that the interaction is governed by social status and material power dimensions to say the least. To work productively with these power dynamics, we explored embodied approaches to articulating critique acknowledging the different ways of knowing stemming from different bodyminds. Here, we line out two exploratory cases illustrating how physical bodies can be directly attended to to express critiques in more direct ways than participants might be used to on a language based level (spoken or signed). We show how communication and critique can take on many forms encouraging us to broaden our methodological toolset to incorporate practices common in disability cultures. Our experiences show that we need to embrace crip approaches to knowledge production to receive more actionable and useful feedback in developing technologies with disabled communities.

Stark, E., Ali, D., Ayre, A., Schneider, N., Parveen, S., Marais, K., Holmes, N., & Pender, R. (2021). Coproduction with Autistic Adults: Reflections from the Authentistic Research Collective. Autism in Adulthood, 3(2), 195-203. DOI: http://doi.org/10.1089/aut.2020.0050.

This article explores coproduction in relation to autistic people. We reflect on the coproduction process with autistic adults from the Authentistic Research Collective at University College London. We aimed to support the autistic population’s mental health needs by coproducing a document on adapting psychological therapy, and by developing a set of reflective guidelines to guide and encourage future coproduction initiatives between autistic and nonautistic team members. We reflect upon six elements that are of potential importance for future coproduction projects with autistic adults: (1) the meaning of coproduction; (2) ground rules and a traffic light system; (3) environmental adaptations; (4) digital communication tools; (5) encouraging authenticity; and (6) supporting autistic strengths. We conclude by discussing future research avenues into optimizing coproduction with autistic people, and how such research may influence both practice and policy.

Storer, K. M., & Branham, S. M. (2021, October). Deinstitutionalizing independence: Discourses of disability and housing in accessible computing. In ASSETS ’21: The 23rd International ACM SIGACCESS Conference on Computers and Accessibility Article No. 31, 1-14. DOI: https://doi.org/10.1145/3441852.3471213. 

The meaning of “homes” is complicated for disabled people because of the historical link between (de)institutionalization, housing, and civil rights. But, it is unclear whether and how this history impacts Accessible Computing (AC) research in domestic spaces. We performed Critical Discourse Analysis on 101 AC articles to explore how (de)institutionalization affects domestic AC research. We found (de)institutionalization motivates goals of “independence” for disabled people. Yet, discourses of housing reflected institutional logics which are in tension with “independence”—complicating how goals were set, housing was understood, and design was approached. We outline three discourses of housing in AC and identify parallels to those used to justify institutionalization in the USA. We reflect upon their consequences for AC research. We offer principles derived from the Independent Living Movement as frameworks for challenging institutional conceptions of housing, to open new avenues for more holistic and anti-ableist domestic AC research.

Waggoner, T., Jose, J. A., Nair, A., &  Susanthika, M. D. (2021). Inclusive Design: Accessibility Settings for People with Cognitive Disabilities. Journal of Information Technology and Software Engineering,11(2), No:252. 

The advancement of technology has progressed faster than any other field in the world. And with the development of these new technologies, it is important to make sure that these tools can be used by everyone, including people with disabilities. Accessibility options in computing devices help ensure that everyone has the same access to advanced technologies. Unfortunately, for those who require more unique and sometimes challenging accommodations, such as people with Amyotrophic lateral sclerosis (ALS), the most commonly used accessibility features are simply not enough. While assistive technology for those with ALS does exist, it requires multiple peripheral devices that can become quite expensive collectively. The purpose of this paper is to suggest a more affordable and readily available option for ALS assistive technology that can be implemented on a smartphone or tablet.

Waardenburg, T., van Huizen, N., van Dijk, J., Dortmans, K., Magnée, M., Staal, W., Teunisse, J. P., & van der Voort, M. (2022). Design your life: User-initiated design of technology to empower autistic young adults. Journal of Enabling Technologies, 16(3), 172-188. DOI: https://doi.org/10.1108/JET-11-2021-0064.

Purpose: This article describes the development and initial experiences of Design Your Life, a new design approach implementing user-initiated design of technological environments that support autistic young adults to live independently.

Design/methodology/approach: This article makes use of a phenomenological Research-through-Design approach. Investigation of possible ways in which a set of four guiding principles could be applied into a design toolkit for autistic young adults and their caregivers by means of three design case studies was conducted. Promising methods from the design practice and literature were applied and contrasted with the lived experiences and practical contexts of autistic young adults and their caregivers.

Findings: This exploratory research yielded several important insights for the design direction of Design Your Life. Reflecting on how the guiding principles played out in practice it was noted that: the case studies showed that stakeholders appreciate the approach. The design principles applied cannot be used without the help of a sparring partner. This suggests that caregivers may be trained in design-thinking to fulfil this role. The Design Your Life method will be iteratively developed, refined and validated in practice.

Originality/value: The presented approach puts design tools in the hands of the people who will use the technology. Furthermore, the approach sees technologies as empowering interventions by which a person can strengthen their own living environment. According to this article, this approach is new for this application. It provides valuable perspectives and considerations for autistic people, caregivers, researchers and policy makers.

Wickman, R. (2020. Accessible architecture: Beyond the ramp. Winnipeg: Gemma B. Publishing.

Growing up with a father who was disabled by an industrial accident, Architect Ron Wickman determined to help build an accessible world, one project at a time. “Accessibility is an essential feature of all successful architecture. No one should be denied access to the built environment.”

This easy-to-read book develops nine concepts toward the creation of greater accessibility in both public and private spaces. The book is illustrated with photos, working drawings and space plans with commentary from Wickman’s practise and elsewhere. 

Williamson, B. (2020). Accessible America: A history of disability and design [Crip]. New York: New York University Press. 

Have you ever hit the big blue button to activate automatic doors? Have you ever used an ergonomic kitchen tool? Have you ever used curb cuts to roll a stroller across an intersection? If you have, then you’ve benefited from accessible design—design for people with physical, sensory, and cognitive disabilities. These ubiquitous touchstones of modern life were once anything but. Disability advocates fought tirelessly to ensure that the needs of people with disabilities became a standard part of public design thinking. That fight took many forms worldwide, but in the United States it became a civil rights issue; activists used design to make an argument about the place of people with disabilities in public life.

In the aftermath of World War II, with injured veterans returning home and the polio epidemic reaching the Oval Office, the needs of people with disabilities came forcibly into the public eye as they never had before. The US became the first country to enact federal accessibility laws, beginning with the Architectural Barriers Act in 1968 and continuing through the landmark Americans with Disabilities Act in 1990, bringing about a wholesale rethinking of our built environment. This progression wasn’t straightforward or easy. Early legislation and design efforts were often haphazard or poorly implemented, with decidedly mixed results. Political resistance to accommodating the needs of people with disabilities was strong; so, too, was resistance among architectural and industrial designers, for whom accessible design wasn’t “real” design.

Bess Williamson provides an extraordinary look at everyday design, marrying accessibility with aesthetic, to provide an insight into a world in which we are all active participants, but often passive onlookers. Richly detailed, with stories of politics and innovation, Williamson’s Accessible America takes us through this important history, showing how American ideas of individualism and rights came to shape the material world, often with unexpected consequences.

Williamson, B., & Guffey, E. (Eds.). (2020). Making disability modern: Design histories. New York: Bloomsbury Visual Arts.

Making Disability Modern: Design Histories brings together leading scholars from a range of disciplinary and national perspectives to examine how designed objects and spaces contributes to the meanings of ability and disability from the late 18th century to the present day, and in homes, offices, and schools to realms of national and international politics. The contributors reveal the social role of objects – particularly those designed for use by people with disabilities, such as walking sticks, wheelchairs, and prosthetic limbs – and consider the active role that makers, users and designers take to reshape the material environment into a usable world. But it also aims to make clear that definitions of disability-and ability-are often shaped by design.

Wilson, C., Sitbon, L., Brereton, M., Johnson, D., & Koplick, S. (2016). ‘Put yourself in the picture’: designing for futures with young adults with intellectual disability. In OzCHI ’16: Proceedings of the 28th Australian Conference on Computer-Human Interaction (pp. 271–281) DOI: https://doi.org/10.1145/3010915.3010924.

Individuals with intellectual disability are all too often overlooked in the planning of their own support. Responding to this concern, and in line with person-centred planning, this paper outlines the collaborative development of a mobile app to support the communication, interests and goals of young adults who attend a disability support organisation. Existing technologies focus predominantly on enhancing academic abilities, such as literacy or numeracy, disregarding the potential to support personal interests and individual goals. Through a process of Reflective Agile Iterative Design (RAID), a mobile app was developed which enabled young adults with intellectual disability to produce an image of themselves achieving a certain goal. Although the app was designed for individual use in formal goal-setting meetings, participants used the app for social activities, such as taking ‘group selfies’, emailing their images to proxies and ‘layering’ selfies. The app supported the individuals beyond the planning process, contributing more broadly to enhancing overall communication, self-expression, and socialisation.

Wolf-Meyer M. (2022). Human-centred design, disability and bioethics. Medical Humanities Online First. DOI: http://dx.doi.org/10.1136/medhum-2022-012391. 
Human-centred design methodologies provide a means to align bioethical advocacy with the needs and desires of disabled people. As a method, human-centred design seeks to locate points of friction in an individual’s experience of everyday interactions, specifically in relation to technologies, but potentially in relation to processes and institutions. By focusing on disabled persons and their experiences of institutional organisation, human-centred design practices serve to create a foundation for a bioethical practice that addresses idiosyncratic needs and desires while providing support for disabled persons and their families. In considering how a design-focused bioethics might operate in this way, I focus on advanced sleep phase syndrome and delayed sleep phase syndrome as a way to show how the temporal ordering of institutions disable the participation of individuals with atypical sleep needs. I then turn to the education of deaf students through the exclusive use of sound, which puts them at a significant disadvantage relative to their hearing peers; this example shows how normative ableism obscures itself in attempts to aid disabled people, but an attention to the experience of deaf students show how exclusively auditory learning can be redesigned. Advocating for flexible institutional organisation and practices situates bioethical advocacy as a means to engage with social organisations in ways that create novel opportunities for able-bodied and disabled people alike.
Worsley, M., & Bar-El, D. (2020). Inclusive making: designing tools and experiences to promote accessibility and redefine making. Computer Science Education Ahead of Print. DOI: https://doi.org/10.1080/08993408.2020.1863705. 

Background and Context: Making is celebrated for bringing exciting tools and learning opportunities to non-traditional designers. However, people with disabilities may find themselves excluded from many making activities and makerspaces. This exclusion is present in making and computer science more broadly.

Objective: We describe a university course that helps broaden their awareness of accessibility in computing and promote accessible making solutions. The course engages students in critical examination of making and allows them to instantiate their learning by designing accessible interfaces and experiences. We study the design of the course and its impacts on students.

Method: We use techniques from grounded theory to analyze data from surveys, projects, and case studies to elucidate the need and the impact of this experience.

Findings: The course filled an important need for students and people with disabilities. By applying a critical disability lens to making, participants developed expansive views of making, both in terms of what “counts” as making and who can participate in it.

Implications: Courses on accessibility address important societal and individual needs that are currently not met by CS curricula. Courses that address these needs should include critical discussions of the domain in question and involve various types of community partnerships. Including these course elements can expand the course’s impact, lead to better project designs, and change perceptions of what is valuable in computing experiences.

Worth, N. (2008, September). The significance of the personal within disability geography. Area, 40(3), 306-314. DOI: https://doi.org/10.1111/j.1475-4762.2008.00835.x.

Drawing on in-depth qualitative data, this article critically examines disability geography as a subfield where the personal is highly valued. The value and the risks inherent in this personal approach will be evaluated, including the usefulness of being an ‘insider’ and the difficulties of being reflexive and critically making use of one’s positionality. The article concludes with reflections regarding how disability geography can confront its marginal status, appealing to researchers who claim no experience of disability while also supporting and encouraging those with personal experiences of disability to participate in the field.

Zallio, M., & Clarkson, J. (2021, December). Inclusion, diversity, equity and accessibility in the built environment: A study of architectural design practice. Building and Environment, 206, 108352. DOI: https://doi.org/10.1016/j.buildenv.2021.108352. 

Accessibility is generally recognised as an important element of architectural design practice. However, studies suggest that the adoption of Inclusive Design by the architectural design community is still quite limited. Inclusive Design embraces the principles of accessibility and its extended definition considers key sociological and behavioural aspects such as physical, sensory and cognitive needs.

This paper presents the results of an ethnographic study, conducted amongst 26 professionals from the building industry, on the adoption of Inclusive Design.

This research aims to explore the challenges and limitations that professionals experience in their daily working practice and to identify strategies to expand the use of Inclusive Design and its extended definition.

The findings emphasise how education and awareness are essential factors to encourage an inclusive mindset amongst architectural design professionals and other stakeholders. In particular, holistically mapping the user journey during the design phase and collecting and evaluating post-occupancy user feedback are complementary strategies that can foster a design process based on inclusion, diversity, equity and accessibility principles for the built environment.

(Dis)courses: Interdisciplinary Disability Dialogues, Spring 2022 – Resource Guide

This webpage provides a variety of resources—including a selection of books and articles, guides and monographs, websites and blogs, and multimedia content—centering disability and disabled voices and perspectives, to accompany the Spring 2022 (Dis)courses: Interdisciplinary Disability Dialogues series. This guide is not intended to be exhaustive, but rather representative.

Contents:

About the Series

Hosted by the Office of Interdisciplinary Programs and Outreach (OIPO) at the Burton Blatt Institute and Wordgathering: A Journal of Disability Poetry and Literature, the Spring 2022 series, “(Dis)courses: Interdisciplinary Disability Dialogues,” included four exciting conversations with luminaries who are engaged variously with many forms of innovative and intersectional Disability cultural work. For more information, visit the series landing page. A PDF copy of the series event poster is available online. The original poster for the series was designed by Prof. Emily Vey Duke.

About the Presenters

  • Shayda Kafai – Shayda Kafai (she/her) is an Assistant Professor of Gender and Sexuality Studies in the Ethnic and Women’s Studies department at California State Polytechnic University, Pomona, and author of Crip Kinship: The Disability Justice & Art Activism of Sins Invalid. As a queer, disabled, Mad femme of colour, she commits to practising the many ways we can reclaim our bodyminds from systems of oppression. To support this work as an educator-scholar, Shayda applies disability justice and collective care practices in the spaces she cultivates. Shayda’s writing and speaking presentations focus on intersectional body politics, particularly on how bodies are constructed and how they hold the capacity for rebellion. From discussions of madness and disability to femme politics and crip art, Shayda works to reframe our most disempowered bodyminds as vehicles of change-making. In honour of self-care and her communities, Shayda is also an artmaker and co-founder of CripFemmeCrafts with her wife, Amy. They make art that empowers all our bodyminds, particularly centring the magic and joy-making that comes from the wisdom and beauty of disabled, Fat bodyminds of colour. Follow Shayda on Instagram or visit her personal website at: https://www.shaydakafai.com/.
  • Naomi Ortiz – Naomi Ortiz is a Poet, Writer, Facilitator, and Visual Artist whose intersectional work focuses on self-care for activists, disability justice, climate action, and relationship with place. Ortiz is the author of Sustaining Spirit: Self-Care for Social Justice (Reclamation Press), a non-fiction book for diverse communities on dealing with the risks of burnout. They are a 2021-2022 Border Narrative Grant Awardee for their multidisciplinary project, “Complicating Conversations.” Ortiz is a 2019 Zoeglossia Poetry Fellow whose poems have been nominated for Best of the Internet and listed on Entropy’s “Best of 2020-2021: Favorite Poems Published online.” They emphasize interdependence, inclusion, and spiritual growth in their poetry, writing, and artwork, which can be found in numerous print and on-line publications, anthologies, and art shows. Ortiz is a Disabled, Mestiza living in the Arizona U.S./Mexico borderlands.
  • Clark A. Pomerleau – Clark A. Pomerleau is an associate professor and associate chairperson of the History Department at the University of North Texas. His scholarship analyzes social justice alternatives to mainstream U.S. society and includes the book, Califia Women: Feminist Education against Sexism, Classism, and Racism (U. Texas, 2013), chapters and articles on LGBTQ+ history, feminist praxis, and trans-inclusion, and a biography in process about Helen Knothe Nearing’s spiritual and practical role in the back-to-the-land movement titled A Consecrated Life in Her Times. Pomerleau also publishes poetry, including the chapbook Better Living through Cats (Finishing Line Press, 2021) that tackles depression and anxiety and the full-length book about growing into elder care, Every Day, They Became Part of Him (Finishing Line Press, 2023). His most recent awards are a 2021 Faculty Research Leave, the 2020 UNT President’s Council Service Award, and nomination for outstanding accessible online teaching.
  • Joseph A. Stramando – Dr. Stramondo (he/him/his) is an Associate Professor of Philosophy and Director of the Institute for Ethics and Public Affairs at San Diego State University. He holds graduate degrees in both philosophy and public policy studies and his current research focuses on the intersection of biomedical ethics and philosophy of disability. Namely, he is concerned with how bioethics can be reframed by centering the lived experiences of disability as a crucial source of moral knowledge that should guide clinical practice, biomedical research, and health policy. He has published scholarship on topics ranging from informed consent procedures to reproductive ethics to pandemic triage protocols to assistive neurotechnology. His work appears in venues such as The Hastings Center Report, Social Theory and Practice, the Kennedy Institute for Ethics Journal, Theoretical Medicine and Bioethics, Utilitas, The International Journal of Feminist Approaches to Bioethics, and more. He is devoting most of his present research effort to developing a co-authored book manuscript, under contract with Routledge, that will address the ways in which the field of bioethics fails to address the moral salience of the social categories of gender, race, disability, and sexuality. In addition to his teaching and research, Dr. Stramondo is also currently serving as the co-President of the Society for Disability Studies. Prof. Stramondo can be reached by email at jstramondo@sdsu.edu. You can also find him on Facebook and Twitter.

Blogs, Blog Posts, and Mass Media

Books, Book Chapters, and Articles

  • Berne, P., & Lamm, N. (2022). Learning from our survival: Patty Berne and Nomy Lamm (Sins Invalid), in conversation. In M. Charne & T. Sellar (Eds.), Disability Dramaturgies [Special Issue]. Theater, 52(2), 21–31. DOI: https://doi.org/10.1215/01610775-9662194. “Patty Berne (executive director/artistic director) and Nomy Lamm (creative director) discuss the work of their performance collective and disability justice advocacy group, Sins Invalid. They address their company’s attempts to implement the principles of disability justice within their own collaborative processes and how theaters might cultivate a culture grounded in care work. Reflecting on the lack of support for queer, POC, and disabled artists in US commercial theater, they discuss the ways that Sins Invalid’s work challenges those institutional paradigms. Finally, they consider what the company—and theater in general—has learned from the COVID-19 pandemic: namely, the challenges and possibilities of producing work online and that addressing accessibility presents rich opportunities for artistic discovery.”
  • Berne, P., Levins Morales, A., Langstaff, D., & Sins Invalid. (2018, Spring/Summer). Ten principles of Disability Justice. In N. Havlin & J. M. Báez (Eds.), Beauty [Feature Issue]. WSQ: Women’s Studies Quarterly, 46(1&2), 227-230. DOI: http://doi.org/10.1353/wsq.2018.0003. “From within Sins Invalid, where we incubate both the framework and practice of Disability Justice, this burgeoning framework has ten (10) principles, each offering new opportunities for movement builders” (p. 227).
  • Boda, P. A (2022). Identity making as a colonization process, and the power of Disability Justice to cultivate intersectional disobedience. Education Sciences, 12(7), 462. DOI: https://doi.org/10.3390/educsci12070462. “Intersectionality has been used to describe the products of difference but scholars who work intersectionally in the tradition of Disability Justice have argued that attention should focus on the process of identity making—those processes by which some Lives–Hopes–Dreams are positioned as more valuable and Whole because of our societies’ commitments to racial capitalist coloniality. This work uses intersectionality as critical social theory, combined with broader cultural analyses of colonization as a process that did not stop within the creation of the Modern Western world, to visibilize identities often explicitly erased: students labeled with disabilities. Through excavating group-made artifacts from a larger research study, I show how intersectionally-disobedient grammars can serve to illuminate complex identity making beyond juxtaposed colonialities of power, and, therein, I situate this bricolage approach as an embodiment toward Disability Justice.”
  • Dolmage, J. T. (2017). Academic ableism: Disability and higher education [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press. DOI: https://doi.org/10.3998/mpub.9708722. “Academic Ableism brings together disability studies and institutional critique to recognize the ways that disability is composed in and by higher education, and rewrites the spaces, times, and economies of disability in higher education to place disability front and center.”
  • Evans, H. D. (2017). Un/covering: Making disability identity legible. Disability Studies Quarterly, 37(1). DOI: https://doi.org/10.18061/dsq.v37i1.5556. “This article examines one aspect of disability identity among people with non-apparent or ‘invisible’ disabilities: the decision to emphasize, remind others about, or openly acknowledge impairment in social settings….[which Evans] call[s]… “un/covering,” and situate[s] this concept in the sociological and Disability Studies literature on disability stigma, passing, and covering.”
  • Kafai, S. (2021). Crip kinship: The Disability Justice & art activism of Sins Invalid. Vancouver, BC: Arsenal Pulp Press. “Crip Kinship investigates the revolutionary survival teachings that Disabled Queer of Color communities offer to all our bodyminds. Sins Invalid is a performance project that centers a Disability Justice framework.”
  • Kuppers, P.  (2022). Eco soma: Pain and joy in speculative performance encounters [Art After Nature Series]. Minneapolis: University of Minnesota Press. “Kuppers illuminates ecopoetic disability culture perspectives, contending that disabled people and their co-conspirators make art to live in a changing world, in contact with feminist, queer, trans, racialized, and Indigenous art projects. By offering new ways to think, frame, and feel ‘environments,’ Kuppers focuses on art-based methods of envisioning change and argues that disability can offer imaginative ways toward living well and with agency in change, unrest, and challenge.” NOTE: This text is also available via Open Access on the University of Minnesota Press website. As noted on the press’s website, “Retail e-book files for this title are screen-reader friendly with images accompanied by short alt text and/or extended descriptions.”
  • Lakshmi Piepzna-Samarasinha, L. (2018). Care work: Dreaming Disability Justice. Vancouver, BC: Arsenal Pulp Press. Care Work “explores the politics and realities of disability justice, a movement that centres the lives and leadership of sick and disabled queer, trans, Black, and brown people, with knowledge and gifts for all.”
  • Lakshmi Piepzna-Samarasinha, L. (2022). The future is disabled: Prophecies, love notes and mourning songs. Vancouver, BC: Arsenal Pulp Press. “Building on the work of her game-changing book Care Work: Dreaming Disability Justice, Piepzna-Samarasinha writes about disability justice at the end of the world, documenting the many ways disabled people kept and are keeping each other – and the rest of the world – alive during Trump, fascism and the COVID-19 pandemic. Other subjects include crip interdependence, care and mutual aid in real life, disabled community building, and disabled art practice as survival and joy.”
  • Li, L., Lourdes Donato-Sapp, H., Erevelles, N., Torres, L. E., & Waitoller, F. (2022). A kitchen-table talk against ableism: Disability justice for collective liberation. Equity & Excellence in Education. DOI: https://doi.org/10.1080/10665684.2021.2047417. “Residing in a fundamentally ableist society while disability justice tends to be rendered invisible in many movements for equity and collective liberation, we aim to challenge the existing knowledge of disability and discuss how these understandings play out in education, policy, and other public spaces. In this kitchen-table talk, we begin by reflecting on our own positionalities in relation to disability to re/imagine alternative definitions of disability justice. We explore the ways language is used to reclaim disability pride and radically disrupt normative stories about disability and other marginalized identities. Being an ally requires centering the voices and lived experiences of disabled people at the intersections of differences, particularly those who are politically and socially alienated and erased.”
  • Lindemann Nelson, H. (2001). Damaged identities, narrative repair. Ithaca, NY: Cornell UP. -“Hilde Lindemann Nelson focuses on the stories of groups of people—including Gypsies, mothers, nurses, and transsexuals—whose identities have been defined by those with the power to speak for them and to constrain the scope of their actions. By placing their stories side by side with narratives about the groups in question, Nelson arrives at some important insights regarding the nature of identity.” NOTE: An earlier version of this text is also available.
  • Montague-Asp, H., Lakshmi Piepzna-Samarasinha, L., Shlasko, D., & Logan Siegel, L. (2022). Ableism and Disability Justice. In M., Adams, L. A. Bell, D. J. Goodman & D. Shlasko, with R. R. Briggs & R. Pacheco (Eds.), Teaching for diversity and social justice (4th ed.). (pp. 303-344). New York: Routledge. DOI: https://doi.org/10.4324/9781003005759. “This chapter offers a framework for understanding and resisting ableism that is informed by the disability justice movement, by emerging disability identity communities, and by the authors’ lived experiences as chronically ill and disabled activists, writers, cultural workers, and educators. It explores the sometimes contradictory implications of different ways of understanding disability (the medical model, the social model, the disability justice model) and outlines key historical legacies of ableism including the relationships between disability and slavery, colonialism, capitalism, and medical science. It describes and analyzes current manifestations of ableism along with examples of organizing for justice in the areas of healthcare, employment, community life, policing, education, and media. The chapter concludes with a sample curriculum for a workshop on ableism and disability justice, together with reflections on integrating disability justice into pedagogy and facilitation.”
  • Moore, L. (2014). Droolicious. In C. Wood (Ed.), Criptiques (pp. 25-28). (A PDF version of this book is available for free online). Criptiques is an anthology of disabled writers exploring the provocative aspects of disability. In this essay, Leroy Moore discusses a song he wrote, Droolicious, and ableist discourse about mainstream, non-disabled aversion and discomfort around disabled people who may drool, “…flip[ing] it by using a cultural vehicle, poetry and song, switching what people are used to seeing as a negative and giving it a new window” (p. 27).
  • Ortiz, N. (2018). Sustaining spirit: Self-care for social justice. Berkeley: Reclamation Press. “Offers powerful, thoughtful, transformative insight into self-care, weaving together personal experiences in class, race and disability advocacy into informative advice on dealing with the risks of burnout.”
  • O’Toole, C. J. (2013). Disclosing our relationships to disabilities: An invitation for Disability Studies scholars. In J. M. Ostrove & J. Rinaldi (Eds.), Self-reflection as scholarly praxis [Special issue]. Disability Studies Quarterly, 33(2). DOI: https://doi.org/10.18061/dsq.v33i2.3708. “…address[es] the question of public nondisclosure of one’s relationship to disability within Disability Studies.”
  • O’Toole, C. J. (2019). Fading Scars: My Queer Disability History (2nd ed.). Berkeley, CA: Reclamation Press. “Fading Scars distills 40 years of activism in disability, queer, parenting communities. You’ve never read anything like it. Funny and engaging, Corbett pulls the curtains back on the humor and pathos of living as a disabled queer in a world that doesn’t welcome either with open arms.”
  • Pressley, A., & Cokley, R. (2021). There is no justice that neglects disability. Stanford Social Innovation Review, 20(1), 2–4. DOI: https://doi.org/10.48558/F3MT-ZT59. “Achieving diversity, equity, and inclusion means putting disability justice in every policy discussion and making it part of the continuing struggle for civil rights.” From a special supplement of Stanford Social Innovation Review, Centering Disability.
  • Silvermint, D. (2018). Passing as privileged. Ergo, 5(1). DOI: https://doi.org/10.3998/ergo.12405314.0005.001 “This paper rejects sweeping verdicts about passing as privileged, or attempts by members of oppressed, stigmatized, or discriminated-against groups to improve their lives by being misidentified as members of an advantaged group. Not only do many familiar arguments rely on problematic assumptions about authenticity and resistance, but they strain to accommodate the diverse identities, circumstances, and individual differences that ought to be affecting our verdicts.”
  • Sins Invalid (n.d.). Skin, Tooth, and Bone: The Basis of Movement is Our People A Disability Justice Primer (2nd. ed.). “The Second Edition of Skin, Tooth, and Bone: The Basis of Movement is Our People (digital version) is available now with full visual layout, or as a text-only version! This Disability Justice Primer, based on the work of Patty Berne and Sins Invalid, offers concrete suggestions for moving beyond the socialization of ableism, such as mobilizing against police violence, how to commit to mixed ability organizing, and access suggestions for events. Skin, Tooth, and Bone offers analysis, history and context for the growing Disability Justice Movement. The Second Edition includes the addition of a new section on Audism and Deafhood written and edited by members of the D/deaf community, and a Call to Action from Survivors of Environmental Injury, as well as disability justice timelines, an extensive glossary, and a resource list for learning more.”
  • Wong, A. (Ed.). (2018). Resistance and hope: Essays by disabled people. Disability Visibility Project. Also available via Open Access. Essays by disabled writers, activists, and artists. This is “crip wisdom for the people.” Includes links to plain language summary, discussion guide, and other relevant resources.
  • Wong, A. (Ed.). (2020). Disability visibility: First person stories from the 21st century. New York: Vintage Books. “This anthology gives a glimpse of the vast richness and complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community.”
  • Yoshino, K. (2006). Covering: The hidden assault on our civil rights. New York: Random House. “Kenji Yoshino argues that the demand to cover can pose a hidden threat to our civil rights. Though we have come to some consensus against penalizing people for differences based on race, sex, sexual orientation, religion, and disability, we still routinely deny equal treatment to people who refuse to downplay differences along these lines.”
  • Wiener, D. R. (2021). Dis/Ability and Critical Cultural Studies. Oxford Research Encyclopedias, Communication. DOI: https://doi.org/10.1093/acrefore/9780190228613.013.1006. “While there are many contestations surrounding the significance, meanings, and interpretations of dis/ability in the field of critical cultural studies, the author presents a variety of foundational as well as emergent concepts, structures, and histories in order to situate these debates. The 30th anniversary of the Americans with Disabilities Act in 2020, increasingly frequent criticisms of the ‘sea of whiteness’ in disability critique, and an attendant call for equitable attention to intersectional theorization and practice, accompanied by a variety of frameworks, are employed to introduce the relevance of these contestations as well as to equip readers with opportunities to engage and study further.”

Guidebooks and Monographs

  • Cripping Pandemic Learning: Collaborative Academic Resource Document – collaborative Google document asking for contributions of “peer-reviewed articles on universal design, online teaching, online assessment, and/or academic ableism (or other relevant categories) that you think other folks should read.”
  • Lakshmi Piepzna-Samarasinha, L., envisioned by Park Milbern, S. & Piepzna-Samarasinha, L. (2021). Disability Justice: An audit tool. “‘Disability Justice: An Audit Tool’ is aimed at helping Black, Indigenous and POC-led organizations (that are not primarily focused around disability) examine where they’re at in practicing disability justice, and where they want to learn and grow. It includes questions for self-assessment, links to access tools, organizational stories and more.”
  • Sins Invalid (n.d.). Skin, Tooth, and Bone: The Basis of Movement is Our People A Disability Justice Primer (2nd. ed.) “The Second Edition of Skin, Tooth, and Bone: The Basis of Movement is Our People (digital version) is available now with full visual layout, or as a text-only version! This Disability Justice Primer, based in the work of Patty Berne and Sins Invalid, offers concrete suggestions for moving beyond the socialization of ableism, such as mobilizing against police violence, how to commit to mixed ability organizing, and access suggestions for events. Skin, Tooth, and Bone offers analysis, history and context for the growing Disability Justice Movement. The Second Edition includes the addition of a new section on Audism and Deafhood written and edited by members of the D/deaf community, and a Call to Action from Survivors of Environmental Injury, as well as disability justice timelines, an extensive glossary, and a resource list for learning more.”

Multimedia

Organizations and Projects

  • Disability Justice Initiative – “We promote policies to ensure disabled people of color and those most marginalized by ableism and other forms of oppression can participate in the economy and democracy.”
  • Disability Visibility Project – “The Disability Visibility Project is an online community dedicated to creating, sharing, and amplifying disability media and culture.”
  • Krip Hop Nation – “Krip-Hop Nation’s mission is to educate the music, media industries and general public about the talents, history, rights and marketability of Hip-Hop artists and other musicians with disabilities.”
  • Sins Invalid – “Sins Invalid is a disability justice based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ / gender-variant artists as communities who have been historically marginalized.”

Periodicals

Podcasts and Podcast Episodes

  • Bethany Stevens: Sex and Disability Expert and Activist – “In this podcast, Bethany Stevens is interviewed. Stevens is a queer sexologist and sociology doctoral student in Sociology at Georgia State University. In this episode she talks about a range of subjects about her current research and the subject of pleasure politics for the disabled.”
  • Disability Visibility Podcast – “This is life from a disabled lens. Disability Visibility is a podcast hosted by San Francisco night owl Alice Wong featuring conversations on politics, culture, and media with disabled people. If you’re interested in disability rights, social justice, and intersectionality, this show is for you. It’s time to hear more disabled people in podcasting and radio.”

Resources Shared by Presenters

  • The Nap Ministry – “The Nap Ministry was founded in 2016 by Tricia Hersey and is an organization that examines the liberating power of naps.”
  • Sick Woman Theory by Johanna Hedva – “Sick Woman Theory is an insistence that most modes of political protest are internalized, lived, embodied, suffering, and no doubt invisible. Sick Woman Theory redefines existence in a body as something that is primarily and always vulnerable” (p. 9).
  • The Spoon Theory – The personal story and analogy of what it is like to live with a chronic illness, with a particular focus on prioritizing needs versus available energies.
  • Time and Again: Old Women and Care Workers Navigating Time, Relationality, and Power in Dementia Units by Hailee Marie Yoshizaki-Gibbons – In this thesis, the author coins the term dementia time, “[when]…old women with dementia and their caregivers disrupt…normative, dominant, and linear approaches to temporality. They do this by slowing institutional time to ‘make time’ for connectivity, engaging in circular and repetitive forms of relationship building, and existing together.”
  • Halberstam, J. (2005). Queer Temporality and Postmodern Geographies. In In A Queer Time and Place: Transgender Bodies, Subcultural Lives [Sexual Cultures Series] (pp. 1-21). New York: New York University Press.

Syracuse University Links and Resources

Websites

  • Bookshare – “Bookshare® is an ebook library that makes reading easier. People with reading barriers can customize their experience and read in ways that work for them.”
  • Disability Demands Justice – Leaders from across the disability community share their views on disability and why an intersectional approach is needed.
  • Fireweed Collective – “Fireweed Collective offers mental health education and mutual aid through a Healing Justice and Disability Justice lens. We support the emotional wellness of all people and center QTBIPOC folks in our internal leadership, programs, and resources.”
  • Leah Lakshmi Piepzna-Samarasinha, Writer, Disability/Transformative Justice Worker – “Leah Lakshmi Piepzna-Samarasinha is a queer disabled femme writer, organizer, performance artist and educator of Burgher/Tamil Sri Lankan and Irish/Roma ascent.”
  • Project LETS – History of Disability Justice – Provides introductory readings and videos, curricula, and other resources on the subject of disability justice.

Updated 8/24/2022

OIPO Disability Abstracts: Science, Technology, Engineering, and Math (STEM/STEAM/STEMM)

Updated 4/18/2025

Adu-Boateng, S., & Goodnough, K. (2021). Examining a science teacher’s instructional practices in the adoption of inclusive pedagogy: A qualitative case study. Journal of Science Teacher Education, 33(2), 303-325. DOI: https://doi.org/10.1080/1046560X.2021.1915605. 

This qualitative case study involves a high school science teacher with a special education background in an urban school in the English School District of Newfoundland and Labrador. Conceptualized within the theoretical framework of Universal Design for Learning (UDL), this study examined the teacher’s instructional practices and the tensions she experienced in the adoption of inclusive science pedagogy. This is a descriptive study that used different data collection methods, including interviews, observations, and documents. Data were analyzed inductively with MAXQDA software using constant comparative analysis. Findings showed that the teacher’s instructional practices in the implementation of inclusive pedagogy focused on creating multiple means to (a) engage diverse students, (b) represent the science curriculum, and (c) enable diverse students to express and communicate their understanding of science. However, several tensions were identified, which impeded the teacher’s effort in the implementation of inclusive science pedagogy. These tensions include inadequate instructional resource teachers, inflexible science curriculum, overreliance on standardized testing, and inadequate professional learning. The paper concludes with implications for science teachers and pre-service teachers’ education, with recommendations on future research direction.

Amato, L. M. (2022). Improving Diversity and Equality in STEM Education: Universal Design for Learning and the LEVEL Model. In J. Keengwe (Ed.), Handbook of Research on Active Learning and Student Engagement in Higher Education (pp. 339-365). IGI Global Scientific Publishing. DOI: https://doi.org/10.4018/978-1-7998-9564-0.ch016.
Within the global business environment there is a critical need for a diverse pool of employees with higher education degrees in the fields of science, technology, engineering, and mathematics (STEM). Unfortunately, in the United States, graduation statistics suggest marginalized groups are underrepresented in the awarding of STEM degrees. This chapter explains why diversity in STEM careers is reported to be a critical need for U.S. economic sustainability and competitiveness in the global business arena. It highlights the major challenges and barriers in STEM education related to instructional design that severely limit student engagement and derail degree attainment in STEM disciplines, especially for marginalized groups. The chapter also explains how Universal Design for Learning (UDL) acts a template for improved instructional design and introduce the LEVEL instructional model, which was created based on the principles of UDL and, when utilized in higher education coursework, promotes active learning and support for diverse learning styles.
Anbuhl, K. L., Cazares, O., Hubert, K. A., Mahapatra, R., & Morgan, J. D. (2023, August). Navigating a research career with a disability. Development, 150(16), dev201906. DOI: https://doi.org/10.1242/dev.201906.
In recent years, we have seen an increasing focus in the academic environment on equity, diversity and inclusion. However, one broad group often left out of these discussions are disabled scientists/scientists with disabilities, who often face severe challenges entering the research profession and navigating their careers. Building on the success of the 2022 Young Embryologist Network’s meeting, which included a session on ‘Working in science with a disability’ ( Morgan, 2023) we learn here from the lived experiences of five biologists who share the challenges and successes of undertaking a scientific career with a disability, as well as accommodations that can make science, technology, engineering, mathematics and medicine (STEMM) careers more accessible and inclusive.
Anderson, J., Anderson, Z., Beaton, K., Bhandari, S., Bultinck, E., Ching, J., Clark, H., Ho, L., Holloway, R., Hopping, L., Hrosz, M., Hrvojevic, D., Huneycutt, A., Iglesias, J., Jogopulos, J.,  Joshi, S., King, T., Klug, M., LaMonaca, G., McCarthy, K., McCarthy, J., Moffatt, M., Pothireddy, S., Prasad, A., Ramos, A., Srivanich, Y., Taina, L., Varathan, S., Wesling, R., & Duerstock, B. S. (2022). Challenges in Inclusiveness for People with Disabilities within STEM Learning and Working Environments. Undergraduate Coursework Paper 5.
This report is a reflection on the necessity for the inclusion of people with disabilities in the field of STEM and the different methods and processes that need to be revised or implemented to achieve this goal. It will delve into further detail about the challenges facing PWDs in STEM through interview anecdotes and survey results. Each solution offered will be accompanied by thorough research and support. Policymakers, teachers and students may use these recommendations to break down barriers to STEM careers and build a more inclusive future.
Antonini, C. (2022). The interface of science and disability: A personal view. Langmuir, 38, 50, 15451–15452. DOI: https://doi.org/10.1021/acs.langmuir.2c03250.
“…is there any nexus between being a person with a disability and being a scientist? My personal answer is yes, in at least two ways: First, my disability has given me the self-confidence to develop a problem-solver attitude, and second, it has taught me to look at the person, beyond labels” (p. 15451).
Ariza, J.Á., Hernández Hernández, C. (2025). A systematic literature review of research-based interventions and strategies for students with disabilities in STEM and STEAM education. International Journal of Science and Mathematics Education. DOI: https://doi.org/10.1007/s10763-025-10544-z.
Statistical studies performed mainly in the U.S. have depicted that students with disabilities (SWDs) are excluded from the educational process and are prone to several gaps and barriers in terms of special accommodations, learning opportunities, and socio-emotional support in Science, Technology, Engineering, Mathematics (STEM)-Science, Technology, Engineering, Arts, Mathematics (STEAM) education. To clarify this, we conducted a systematic literature review focused on interventions and strategies in STEM and STEAM education for SWDs based on 263 studies retrieved from the databases SCOPUS, Web of Science (WoS), and ERIC from 2013–2024. The studies cover proposals from early childhood to tertiary education. After the screening and appraisal stages, 39 interventions with 21 strategies were identified. The outcomes mostly reveal the following: (1) The studies are mainly focused on the U.S. and in students with autism, learning disabilities, or behavioral disorders between low and medium severity levels. (2) Interventions for autistic students use robotics and coding to foster cognitive, social, and communicative skills. (3) Interventions for deaf or hard-of-hearing students focus on creating a science identity and the issues with non-standardized STEM concepts in American sign language (ASL); in contrast, visually impaired students focus on assistive technologies and the accessibility of educational materials. (4) Little attention has been paid to other disabilities apart from autism, intellectual or learning ones, as well as the perspective of educators to support SWDs in classrooms. And (5) New machine learning, metaverse, and AI models are being used to assess the cognitive-emotional states of the SWDs. The conclusions and insights derived from this study can help educators and researchers to create new methodologies or strategies that sustain SWDs in STEM-STEAM education.

Armstrong, M. A., & Averett, S. L. (2024). Women with disabilities in STEM. In Disparate measures: The intersectional economics of women in STEM work (pp. 183-212). Cambridge, MA: MIT Press.

Being a person with a disability is a complex identity that is welded to concepts that are central to this book—opportunity, bias, and systemic disadvantage. The significance of the category is matched by its complexity: to ask what the term disability means is to invoke (intertwined) political, economic, legal, medical, and social factors whose richness and dimensionality far exceed what this case study can summarize. The literature on the history of disability in the US reveals not only entrenched ableism but also the extent to which the idea of disability has transformed over the last century (Albrecht, Seelman, and Bury 2003; Francis and Silvers 2016; Grue 2016; Stiker [1999] 2019). And like many social-identity categories, disability cuts both ways: it is a social project that is always under construction and is also increasingly understood as an identity group and a focal point for building communities, seeking rights and protections, and promoting positive social change.

Baird, A., & Kuryloski, L. (2024). Connecting Accessibility and Engineering/Computing in the Technical Communication Classroom. 2024 IEEE International Professional Communication Conference (ProComm), Pittsburgh, PA Proceedings (pp. 139-144). DOI: https://doi.org/10.1109/ProComm61427.2024.00033.

In the required Writing in the Disciplines course for undergraduate engineering and computer science students, the authors have developed a project about accessibility that requires students to identify a virtual or physical space (primarily on campus or in the local Buffalo community) and write reports that analyze the accessibility of the site and provide recommendations for improvement. By bridging concepts from Disability Studies and engineering design, the authors aim to help students understand how structural inequities are built into spaces, products, and the digital world. This project also offers students an opportunity to publish their work via the university’s institutional repository. A student survey given after the project’s conclusion demonstrated that students felt they knew more about accessibility and its role in engineering work; however, there was a lack of interest in publishing. This paper describes the project, discusses successes and challenges, outlines plans for moving forward, and offers recommendations for others interested in implementing a similar project.

Barney, A. (2024). Success in STEM – And how foundation years support students from neurodivergent groups to achieve it. In S. Leech & S. Hale (Eds.), Foundation years and why they matter (pp. 79-94). Leeds, UK: Emerald Publishing Limited. DOI: https://doi.org/10.1108/978-1-83797-212-820241006.

“In this chapter, we explore the potential for foundation years to offer a route into HE for neurominorities. University students are increasingly enrolling with identified neurodivergence, including dyslexia, autism, and ADHD. However, the identification of neurodivergence in the earlier years of schooling, though increasingly common, is not universal. As a result, many students enrolling in HE, both young and mature, are assessed and identified as neurodivergent during their programme of study. This chapter considers the traits and educational and social support needs of students with dyslexia, autism, and ADHD for success in HE, and how these may be addressed through foundation year pedagogy, assessment strategies, and learning culture. [paragraph] This chapter begins with a brief overview of the three most common forms of neurodivergence encountered in HE: dyslexia, autism, and ADHD. It goes on to consider the prevalence of these three types of neurodivergence in UK HE and their interaction with learning at university. The potential for foundation year pedagogies to support the learning of people from neurominorities is then discussed, and finally, the Engineering Foundation Year at the University of Southampton, UK, is used as a case study of support for neurodivergent students starting out on degrees in STEM subjects” (pp. 79-80).

Batty, L., & Reilly, K. (2022). Understanding barriers to participation within undergraduate STEM laboratories: Towards development of an inclusive curriculum, Journal of Biological Education. DOI: https://doi.org/10.1080/00219266.2021.2012227.

The increase in student diversity, legislative changes and shift towards the social model of disability has led to greater emphasis on inclusive curricula within Higher Education (HE). Whilst there are good examples for changes in assessment, delivery and student support, specific challenges faced by Science Technology Engineering and Mathematics students in relation to laboratory teaching are less well understood. A questionnaire approach was used to determine barriers that students face within laboratory teaching. Questionnaire invitations were distributed by email to undergraduate students at institutions within the United Kingdom with a total of 232 responses. Results indicated a lower sense of belonging for female students and those with a disability. Differences between ethnic groups could not be identified due to low numbers of Black Asian, Minority Ethnic students, which highlights broader issues of participation in STEM subjects. Prior experience of students in relation to the number of labs, rather than subject, was also important, emphasising the critical link between school and HE. Communication of information was critical for learning with students often requiring multiple methods; timing and structure of this were important. A more inclusive lab environment can be developed through the use of online support, better structuring of labs and changes to assessment.

Beardmore, D. C., Sandekian, R., & Bielefeldt , A. (2022, August). Supporting STEM graduate students with dis/abilities: Opportunities for Universal Design for Learning. 
Paper presented at 2022 ASEE Annual Conference & Exposition, Minneapolis, MN.

While little is known about the enrollment and retention rates of STEM graduate students, studies indicate that the way higher education generally approaches STEM graduate programs overlooks and excludes individuals with dis/abilities. This research examines the experiences of STEM graduate students with non-apparent (also called “invisible”) dis/abilities as related through the lens of critical dis/ability theory. In this paper, we review the findings from the first phase of a larger study through the lens of Universal Design for Learning (UDL). We used Harvey’s interview process to explore the experiences of two STEM graduate students who self-identify as having “invisible” dis/abilities or “different abilities” through a progressive series of interviews. In this paper, we review a selection of the participant’s experiences and provide recommendations on how UDL can be implemented to overcome the barriers graduate students may be facing in their coursework, research, and advising. We provide these recommendations in an effort to create a more inclusive and welcoming environment for all graduate students. Further, we hope that our research findings help individuals serving university students at any level in any discipline ask what opportunities they have to create a more inclusive and welcoming environment through the tenants of UDL.

Bonnette, R., Abramovich, S., Decker, A., & Fabiano, G. A. (2023). Building belonging for multiply marginalized neurodivergent students in STEM higher education. In P. Blikstein, J. Van Aalst, R. Kizito & K. Brennan (Eds.), Proceedings of the 17th International Conference of the Learning Sciences – ICLS 2023 (pp. 870-873). International Society of the Learning Sciences.

Neurodivergent students often struggle with a sense of belonging, given barriers to self-advocacy, mental health, and social skills. This is even more challenging for multiply marginalized students, such women and people of color who are underrepresented in STEM programs. Exacerbating these problems is the dearth of effective professional development for helping STEM instructors better teach neurodivergent students. To prototype inclusive, effective training, we collected survey data from undergraduate STEM students about their experiences as neurodivergent students and what needs and recommendations they had for instructor practice. This short paper presents preliminary survey results and a theoretical curriculum approach for instructor professional development for neurodiversity in STEM.

Bonnette, R. N., Abramovich, S. Fabiano, G. A., Decker, A., Sullivan, V., & Alexandre, H. (2024, May). Alignment and Misalignment: Critical Differences in the Way That Instructors and Students Perceive Support for Neurodiversity in Undergraduate Computer Science Education. Paper presented at Neurodiversity at Work Research Conference, University of Maryland, College Park, Maryland.

Successful graduation from post-secondary programs can be a major stumbling block for neurodivergent students’ transition to work. Most of the accommodations universities offer rely on neurodivergent students’ abilities to self-advocate. But understanding, synthesizing, and communicating one’s needs can be particularly challenging for neurodivergent students. This leaves instructors to make their best guesses at how to support their students, creating potential for misalignment between student and instructor perceptions surrounding neurodiversity. By understanding the alignment and misalignment between instructor and student understandings of neurodivergent student needs, the practices that can support them, and the barriers that hinder support, we can more effectively identify feasible pathways towards addressing neurodiversity in the classroom. This exploratory study investigated themes and compared student and instructor responses in an undergraduate Computer Science program. Preliminary findings suggest students may more easily identify the barriers they encounter than communicate the underlying need or a solution. The instructors—themselves neurodivergent adults—struggled less with vocalizing neurodivergent needs and identifying practices that could potentially support their learning, but likewise identified numerous barriers to enacting the practices they thought would help the most. We discuss preliminary findings on misalignment between the issues instructors and students identified and possible areas for professional development.

Booksh, K.S., Madsen, L.D. (2018). Academic pipeline for scientists with disabilities. MRS Bulletin, 43, 625–631. DOI: https://doi.org/10.1557/mrs.2018.194.

People with disabilities are an underrepresented group in materials science and, more broadly, in science, technology, engineering, and mathematics (STEM) fields. However, inclusion of persons with disabilities is often left out in the drive to increase diversity. Efforts to increase diversity in PhD-level leadership positions have not resulted in significant gains among people who identify as having a disability. This article presents the status of people with disabilities in the STEM pipeline, examines reasons why there has been little progress in increasing doctorate degree attainment for people with disabilities in STEM, and discusses possible ways to get people with disabilities to become more active in advanced STEM careers. While the data presented here come solely from the United States and lack granularity to pinpoint the status of persons with disabilities in materials science and engineering, the concepts addressed are transferable to both materials science and engineering, in particular, and to other countries in general.

Borrego, M., Chasen, A., Chapman Tripp, A., Landgren, E., &  Koolman, E. (2025). (2025). A scoping review on U.S. undergraduate students with disabilities in STEM courses and STEM majors. International Journal of STEM Education, 12, 2 (2025). https://doi.org/10.1186/s40594-024-00522-2.

Background The purpose of this scoping review is to describe how the literature has discussed and studied disability in undergraduate-level STEM courses in the United States. A Critical Disability Studies lens informed our inclusion criteria.

Results We considered extensive lists of disability types and diagnoses and concluded that “disability” as a search term best captured educational experiences rather than medical approaches. After screening nearly 9000 abstracts, we identified a final set of 409 dissertations, articles, conference papers, commentaries, briefs and news items. Sources appeared in discipline-based education research (DBER), STEM disciplinary and education journals as well as DBER conferences. Under 10% of sources included 2-year college settings. The largest groups of sources focused on disability writ large (39%, vs. specific categories) and across STEM (38%, vs. specific disciplines). Students were the main research participants (80%). Instructors were the main target of recommendations (84%). In terms of solutions, the largest group (n = 111) advocated for Universal Design, followed by accommodations (n = 94), and technology developed or tested with persons with disabilities (n = 90). Sources which the authors framed as empirical studies less frequently disclosed positionality as a person with a disability (16%) than non-empirical sources (21%). Quantitative (n = 125), qualitative (n = 99), and mixed methods (n = 64) approaches were well-represented. The most common data collection methods were surveys, assessments or task completions (n = 161 sources), followed by interviews (n = 109), observations (n = 44), document analyses (n = 18), and institutional student records (n = 14).

Conclusions More research is needed that centers the experiences of students with disabilities, focuses on specific disability types, employs critical quantitative and qualitative methodologies, and otherwise avoids implicit deficit views of disabled students. Citations to the qualifying sources are available in a public Zotero library.

Boyd, E. A., & Best Lazar, K. (2024). “I’m still here and I want them to know that”: experiences of chemists with concealable identities in undergraduate research. Chemistry Education Research and Practice Advance Article. DOI: https://doi.org/10.1039/D4RP00094C.

Students with concealable identities, those which are not always visually apparent, must navigate the difficult choice of whether to reveal their concealed identities—a choice that has been found to impact an individual’s psychological well-being. Research that gives voice to those with concealable identities is highly lacking, and subsequently, work that describes the experiences of undergraduate chemists participating in engaged learning opportunities is even more limited. This study utilizes a phenomenographic approach through the theoretical lens of Undergraduate Research Science Capital (URSC), to analyze the experiences of six students as they navigate undergraduate research experiences and the effect of their visible and concealable identities. Though all six students described similar levels of URSC, their experiences, especially as they relate to their concealable identities, help to construct a multi-faceted perspective of undergraduate chemists who engage in undergraduate research. These results highlight the need for multiple approaches to equity efforts to ensure that high-impact practices such as undergraduate research are accessible to all students.

Bratanovskii, S., Bogdanova, Y., Orsayeva, R., Khimmataliev, D., & Rezanovich, I. (2020). Problems of accessibility of higher engineering education for students with special needs. Opción, 36, Special Edition No. 27, 2192-2219. Recuperado a partir de https://produccioncientificaluz.org/index.php/opcion/article/view/32533. 

The article is devoted to studying the problems of accessibility of higher engineering education for people with disabilities and persons with disabilities (PWD), i.e. persons with special learning needs (SLN). Vocational education in modern conditions is becoming a social elevator, giving people with disabilities and disabilities an opportunity for socialization and employment. Studying foreign experience reveals the effectiveness of inclusive education. The article describes the current state of inclusive higher education, including engineering, in foreign countries (USA, Austria, Finland, etc.) and Russia. The successful practices of training people with higher education in foreign universities are presented. The characteristic of modern trends in the development of inclusive education in the Russian Federation is fulfilled. The criteria of affordable education in a world practice are highlighted in order to compare and evaluate its effectiveness in the Russian Federation. The advantages and disadvantages of the existing training system for disabled people and people with disabilities in Russian practice are noted. Weak demand for engineering specialties in universities of the Russian Federation was revealed. A study of the causes of this phenomenon.

Busch, C. A., Wiesenthal, N. J., Mohammed, T. F., Anderson, S., Barstow, M., Custalow, C., Gajewski, J., Garcia, K., Gilabert, C. K., Hughes, J., Jenkins, A., Johnson, M., Kasper, C., Perez, I., Robnett, B., Tillett, K., Tsefrekas, L., Goodwin, E. C., & Cooper, K. M. (2023). The disproportionate impact of fear of negative evaluation on first-generation college students, LGBTQ+ students, and students with disabilities in college science courses. CBE—Life Sciences Education, 22(3), ar31, 1–16.

Fear of negative evaluation (FNE), defined as a sense of dread associated with being negatively judged in a social situation, has been identified as the primary factor underlying undergraduate anxiety in active-learning science courses. However, no quantitative studies have examined the extent to which science undergraduates experience FNE and how they are impacted by FNE in college science courses. To address this gap, we surveyed 566 undergraduates from one university in the U.S. Southwest who were enrolled in life sciences courses where they had opportunities to speak in front of the whole class. Participants were asked a suite of questions regarding their experiences with FNE in large-enrollment college science courses. We found that first-generation college students, LGBTQ+ students, and students with disabilities reported disproportionately high levels of FNE compared with their counterparts. Additionally, students reported that FNE can cause them to overthink their responses and participate less in class. Participants rated being cold called and presenting alone as forms of whole-class participation that elicit the highest levels of FNE. This research highlights the impact of FNE on undergraduates and provides student-generated recommendations to reduce FNE in active- learning science courses.

Carabajal, I. G & Atchison, C. L. (2020). An investigation of accessible and inclusive instructional field practices in US geoscience departments. Advances in Geosciences, 53, 53-63. DOI: https://doi.org/10.5194/adgeo-53-53-2020.

This study examines current accessible field-based instructional strategies across geoscience departments in the United States that support students with visual, hearing, and mobility disabilities. A qualitative questionnaire was administered to geoscience instructors from over 160 US geology departments. Outcomes from the data analysis were used to categorize accessible instructional practices into three distinct pedagogical methods: modifications, accommodations, and options for accessible instructional design. Utilizing the lens of critical disability theory, we then investigated how the identified teaching practices varied in inclusion, as some strategies can often be more exclusionary towards individual students with disabilities. Although from a US perspective, the outcomes of this study offer practical suggestions for providing accessible and inclusive field experiences that may inform a global geoscience instructional context.

Carrera Zamanillo, I. (2022). Breaking barriers for those with hidden disabilities. Nature Reviews Earth & Environment, 3, 809–810. DOI: https://doi.org/10.1038/s43017-022-00374-w.

Chronic illnesses, mental health issues, and other hidden disabilities can be debilitating, especially in combination with stigmatization and lack of proper accommodations. Breaking barriers in academic systems for those with hidden disabilities demands that personal, institutional and organizational ableist biases are overcome, writes Isabel Carrera Zamanillo.

Castro, I. O., & Atchison, C. L. (2024, March 14). Acknowledging the intersectionality of geoscientists with disabilities to enhance diversity, equity, inclusion, and accessibility. In A. Al Suwaidi, S. Hope, N. Dowey, & K. Goodenough (Eds.), Inclusion and Diversity in Earth and Environmental Sciences [Special Issue]. Earth Science, Systems and Society, 4, Article 100811. DOI: https://doi.org/10.3389/esss.2024.10081.

The geosciences have implemented a variety of efforts designed to strengthen diversity, equity, inclusion, and accessibility (DEIA) of underrepresented groups. While these efforts have had substantial financial investment, recruitment and retention for underrepresented individuals has yet to reflect this. To improve the resources available for underrepresented scholars, the geoscience community must expand its exploration of identity beyond a singular construct, and instead focus on how identities intersect. In this exploratory study, the framework of intersectionality will be highlighted to better understand the convergence of disability with other underrepresented identities in the geoscience disciplines. Major themes of social inclusion and belonging, power, safety, and opportunity are presented through the lived experiences of geoscientists, along with recommendations on expanding broadening participation efforts for underrepresented individuals in the geosciences.

Cech, E. A. (2022, June 15). The intersectional privilege of white able-bodied heterosexual men in STEM. Science Advances, 8(24), eabo1558. DOI: https://doi.org/10.1126/sciadv.abo1558.

A foundational assumption of science, technology, engineering, and math (STEM) inequality research is that members of the most well represented demographic group—white able-bodied heterosexual men (WAHM)—are uniquely privileged in STEM. But is this really the case? Using survey data of U.S. STEM professionals (N = 25,324), this study examines whether WAHM experience better treatment and rewards in STEM compared with members of all 31 other intersectional gender, race, sexual identity, and disability status categories. Indicating systematic advantages accompanying WAHM status, WAHM experience more social inclusion, professional respect, and career opportunities, and have higher salaries and persistence intentions than STEM professionals in 31 other intersectional groups. Decomposition analyses illustrate that these advantages operate in part as premiums—benefits attached to WAHM status that cannot be attributed to variation in human capital, work effort, and other factors. These findings motivate research and policy efforts to move beyond a single axis paradigm to better understand and address intersectional (dis)advantages in STEM.

Cech, E. A. (2023, April). Engineering ableism: The exclusion and devaluation of engineering students and professionals with physical disabilities and chronic and mental illness. Journal of Engineering Education, 112(2), 462-487. DOI: https://doi.org/10.1002/jee.20522.

Background: The experiences of students and professionals with disabilities are routinely excluded from scholarly and policy debates about equity in engineering. Emergent research suggests that engineering is particularly ableist, yet systematic accounts of the possible exclusion and devaluation faced by engineers with disabilities are largely missing.

Purpose/Hypothesis: This paper asks, do engineers with disabilities have more negative interpersonal experiences in engineering classrooms and workplaces than those without disabilities? Utilizing a social relational model of disability, I hypothesize that engineers with physical disabilities and chronic and mental illness are more likely to experience exclusion and professional devaluation than their peers and, partly as a result, have lower persistence intentions.

Data/Methods: The paper uses survey data from 1729 students enrolled in eight US engineering programs (American Society for Engineering Education Diversity and Inclusion Survey) and 8321 US-employed engineers (Science, Technology, Engineering, and Math Inclusion Study Survey). Analyses use regression, mediation, and intersectional approaches.

Results: Consistent with expectations, engineering students and professionals with disabilities are less likely than their peers to experience social inclusion and professional respect at school and work. Students with disabilities are more likely to intend to leave their engineering programs and professionals with disabilities are more likely to have thought about leaving their engineering jobs compared to peers, and their greater risks of encountering interpersonal bias help account for these differences. Analyses also reveal intersectional variation by gender and race/ethnicity.

Conclusion: These results suggest that engineering harbors widespread ableism across education and work. The findings demand more scholarly attention to the social, cultural, and physical barriers that block people with disabilities from full and equal participation in engineering.

Chasen, A., Borrego, M., Koolman, E., Landgren, E., & Chapman Tripp, H. (2025). A systematic review of differences for disabled students in STEM versus other disciplinary undergraduate settings. Journal of Engineering Education, 114(1), e20627. DOI: https://doi.org/10.1002/jee.20627.

Background Engineering education and other discipline-based education researchers may motivate their work with claims that STEM (science, technology, engineering, and mathematics) norms and culture are unique, thus requiring focused study. As research on disabled students gains momentum in engineering education, it is important to understand differences that limit generalizability of prior work in other disciplines to STEM.

Purpose What do studies document as differences between STEM and non-STEM settings that impact disabled undergraduates, and to what extent are these studies using asset-based perspectives of disability? Scope/Method This systematic review identified US studies that compared STEM to non-STEM disciplines in regards to disabled undergraduate students. The qualifying studies, published during 1979–2023, comprise 22 journal articles and 15 doctoral or master’s theses. Most studies used quantitative methods (n = 28).

Results Of the 37 qualifying studies, 20 instructor studies provided moderate evidence that STEM instructors are less willing or less knowledgeable about how to support disabled students through accommodations or course design. We highlight a small number of student studies identifying assets of disabled students, although most took a deficit view by comparing disabled student experiences to an able-bodied norm. Few studies emphasized the structural characteristics of STEM such as culture and educational practices that contribute to socially constructing disability by acting as barriers that disable students.

Conclusions More work is needed to examine instructor actions beyond their intentions and attitudes toward disabled students. Critical and asset-based perspectives are needed in future study designs that center disability to uncover systemic barriers and identify assets disabled students bring to STEM.

Chasen, A.,  Chapman Tripp, H., &  Borrego, M. (2024). Disability and postsecondary fieldwork experiences in the natural sciences: A systematic review. Journal of Research in Science Teaching Early View, 1–34. https://doi.org/10.1002/tea.21989.

We present a systematic review of 29 empirical studies on disability and fieldwork in natural science, postsecondary educational settings. Undergraduate students with disabilities are underrepresented in STEM, and disciplines requiring major field components are some of the least diverse, at least in part because fieldwork has been traditionally viewed as hard, physical, and masculine. Disability Studies in Education (DSE) frames the research questions, inclusion criteria and results. Studies were coded by disability model used, barriers and strategies to accessibility in field science, and meaningful involvement of persons with disabilities in research on fieldwork education. Although most studies asserted a view of disability as a social, cultural, and political phenomenon, some deficit language and interpretations persisted. Few studies included author positionality, and even fewer disclosed author disability status. The main instructional recommendations emphasize flexibility and adaptability, presuming student competence and making small-scale changes consistently over time. Multiple studies emphasize the need for proactive planning, including robust contingency plans, and explaining how these plans can negate the need for complex modification. Twenty-four additional non-empirical studies are identified as resources for discipline-specific guides and checklists for inclusive fieldwork. We conclude that important steps are being taken to investigate and critique barriers to fieldwork participation for students with disabilities, but there is still much work to be done in addressing systemic barriers beyond the control of individual instructors.

Chasen, A., & Pfeifer, M. A. (2024). Empowering disabled voices: A practical guide for methodological shifts in biology education research. CBE—Life Sciences Education, 23(3). DOI: https://doi.org/10.1187/cbe.24-02-0076.

Biology education research provides important guidance for educators aiming to ensure access for disabled students. However, there is still work to be done in developing similar guidelines for research settings. By using critical frameworks that amplify the voices of people facing multiple forms of marginalization, there is potential to transform current biology education research practices. Many biology education researchers are still in the early stages of understanding critical disability frameworks, such as Disability Critical Race Studies (DisCrit), which consists of seven tenets designed to explore the intersecting experiences of ableism and racism. Our Research Methods Essay uses DisCrit as a model framework and pulls from other related critical disability frameworks to empower disabled voices in biology education research. Drawing from existing scholarship, we discuss how biology education researchers can design, conduct, and share research findings. Additionally, we highlight strategies that biology education scholars can use in their research to support access for participants. We propose the creation and sharing of Access and Equity Maps to help plan—and make public—the steps researchers take to foster access in their research. We close by discussing frequently asked questions researchers may encounter in taking on critical frameworks, such as DisCrit.

Chini, J. J. & Scanlon, E. M. (2023). Teaching physics with disabled learners: A review of the literature. In M. F. Taşar and P. R. L. Heron (Eds.), The International Handbook of Physics Education Research: Special Topics (pp. 1-1 – 1-34). Melville, NY: AIP Publishing. DOI:  https://doi.org/10.1063/9780735425514_001.

Disability is an often-overlooked aspect of diversity. According to the World Health Organization, approximately 15% of the world’s population identifies as disabled, yet there is a dearth of knowledge and literature about supporting disabled learners in postsecondary physics courses. The goal of this chapter is to synthesize and critique the extant literature about how instructors can teach physics courses in ways to support disabled leaners. Through a systematic literature review, 66 sources were identified which discuss physics, teaching, and disability. In the extant literature, 51 sources are written for practitioners and 15 sources contain novel research. Overall, the literature includes suggestions and solutions to respond to access needs and begins to explore experiences of disabled students and the role of instructors and higher education administrators in supporting the variety of students’ needs, abilities, and interests. Findings and implications are disaggregated by suggestions for practice and for education researchers.

Chrysochoou, M., & Zaghi, A. E., & Syharat, C. M., & Motaref, S., & Jang, S., & Bagtzoglou, A., & Wakeman, C. A. (2021, July), Redesigning Engineering Education for Neurodiversity: New Standards for Inclusive Courses Paper presented at 2021 ASEE Virtual Annual Conference Content Access, Virtual Conference. DOI: https://doi.org/10.18260/1-2–37647.

Meaningful inclusion of neurodivergent students in engineering requires us to move beyond a focus on accommodations and accessibility and embrace a strength-based approach toward neurodiversity. A large body of literature suggests that neurodivergent individuals, including those with attention deficit hyperactivity disorder (ADHD), dyslexia, or autism spectrum disorder (ASD) possess a wide range of unique strengths that may be assets in engineering. These strengths include divergent thinking, risk-taking, 3-dimensional visualization skills, pattern identification, and systems thinking. Despite the potential of nontraditional thinkers to contribute to engineering breakthroughs, recruitment and retention rates of neurodivergent students in engineering programs remain extremely low. The emphasis on conventional pedagogical methods in engineering programs, coupled with a deficit-based approach that is focused on the remediation of weaknesses, does little to foster the unique strengths of neurodivergent students. In addition to the obstacles posed by the traditional educational environment, the stigma related to a disability label leads many neurodivergent college students to neither disclose their diagnosis nor obtain academic accommodations that may help them to persist in a challenging learning environment. To address these challenges and realize the potential contributions of neurodivergent individuals to engineering fields, a research project funded by the Engineering Education and Centers of the National Science Foundation has been established to transform engineering education and create an inclusive learning environment that empowers diverse learners. The project encompasses a wide variety of interventions in all aspects of academic life, from recruitment to career development. As part of this program, three courses, Statics, Mechanics of Materials, and Fluid Mechanics, have been revised to address the unique strengths and challenges of neurodiverse students and improve the educational experience for all students. These pilot courses are fundamental engineering courses that are taken by a large number of students in a range of engineering majors including civil and environmental, mechanical, biomedical, and materials science and engineering. This paper presents an overview of a new framework for inclusive course design standards that were developed by engineering faculty along with experts in curriculum and instruction. Current universal design standards emphasize aligning course objectives, learning experiences and assessments, explaining course information clearly, and using varied and accessible instructional materials. These universal design standards are adequate to provide courses that are accessible to all learners. However, to provide inclusive courses for neurodivergent students, additional standards are necessary to ensure that students can identify and use their unique strengths in an engineering context. The new framework expands upon universal design principles and provides standards that are anchored in a strength-based approach and centered around three core elements: a culture of inclusion, teaching and learning, and instructional design. The standards’ application across the three courses has common elements (e.g., ability to choose standard versus creativity-based assessments) and differences to reflect instructor style and course content (e.g., incorporation of design aspects in more advanced courses). It is anticipated that the use of these standards will improve learning outcomes and enhance the educational experience for neurodivergent students.

Chun, J., Kim, J., Lee, M., & Richard, C. (2024). Navigating the Career Development of Students with Disabilities in Science, Technology, Engineering, and Mathematics (STEM). Rehabilitation Counseling Bulletin OnLine First. DOI: https://doi.org/10.1177/00343552231224778.

In pursuit of the full inclusion of individuals with disabilities in science, technology, engineering, and mathematics (STEM) education and careers, it is essential to facilitate their successful academic and career development, while simultaneously implementing STEM pathways that mitigate barriers and improve retention. This study endeavors to explore the impact of career development activities, self-efficacy, outcome expectations, and goals on the quality of life (QoL) of college students with disabilities in STEM. Participants were 182 college students with disabilities attending 2-year and 4-year private/public universities in a Midwestern state. The findings of this research offer empirical evidence for a structural model that predicts the QoL of college students with disabilities in STEM. These results underscore the importance of strengthening support systems, nurturing partnerships, and enhancing access for students with disabilities engaged in STEM learning and career exploration. By shedding light on these dynamics, this research contributes to the creation of a more inclusive and supportive environment for individuals with disabilities who aspire to excel in STEM fields.

Chun, J., Zhou, K., Rumrill, S., & Tittelbach, T. (2023, March). STEM career pathways for transition-age youth with disabilities. Rehabilitation Research, Policy, and Education, 37(1), 36-48. DOI: http://dx.doi.org/10.1891/RE-22-15.

Background: Although there is an increasing demand for workers in STEM fields, people with disabilities are underrepresented in STEM educational programs and related occupations. Among those who achieved competitive integrated employment after serving under an Individualized Plan for Employment (IPE) by the state-federal vocational rehabilitation (VR) system, only 5.3% of individuals with disabilities were engaged in STEM jobs/careers during the years 2017–2019. Of those with an employment outcome in STEM fields, 8,348 (40.9%) were transition-age youth aged 14–24.

Objective: Using Rehabilitation Service Administration (RSA-911) data for the fiscal years from 2017 to 2019, the current study investigated the characteristics of transition-age youth with disabilities aged 14–24 in the state-federal VR system that predicted employment outcomes in STEM fields.

Methods: A logistic regression analysis was used to examine the associations between individual characteristics and STEM career attainment.

Findings: Results illustrated that gender, race, living arrangement, and the receipt of general assistance/SSI/SSDI/TANF predicted employment outcomes in STEM fields.

Conclusions: The research findings provide support for the understanding of demographic characteristics of transition-age youth with disabilities successfully closed in STEM jobs/careers after serving under an IPE. A discussion of the strategies and interventions associated with promoting career development and decisions toward the STEM field for transition-age youth with disabilities is provided.

Crabtree, A., Caudel, D., Pinette, J., Vang, C., Neikirk, K., Kabugi, K., Zaganjor, E., & Hinton, Jr., A. (2025). Recruiting and retaining autistic talent in STEMM. iScience, 27(3), 109080. DOI: https://doi.org/10.1016/j.isci.2024.109080.

Autistic adults (AA) have the highest unemployment rate relative to other groups, regardless of disability status. Systemic changes are needed to acquire and retain AA in science, technology, engineering, mathematics, and medicine (STEMM). Here, we discuss the unique challenges AA face in STEMM and possible solutions to overcome them.

D’Agostino, A. T. (2021). Accessible teaching and learning in the undergraduate chemistry course and laboratory for blind and low-vision students. In Diversity, Equity, Inclusion, and Respect in Chemistry Education Research and Practice [Special Issue]. Journal of Chemical Education ASAP. DOI: https://doi.org/10.1021/acs.jchemed.1c00285. 

Symbolic, spatial, and visual information, which is important for comprehending and learning physical and natural sciences, is not readily accessible to blind and low-vision (BLV) students in the undergraduate chemistry classroom, laboratory, and virtual environment via conventional means (through print and images), thus, creating a disadvantageous and inequitable situation. Appropriate instruction methods can be used to include these differently abled students in the learning process while also enhancing the learning outcomes of a diverse student population. By considering the teaching approach and universal design practices, and utilizing adapted methods, collaborative learning, and nonvisual assistive technologies and equipment, chemistry classroom/laboratory work for BLV students can be transformed from a passive experience to an active one. By creating the least restrictive learning environment, BLV students are enabled to become independent workers. Nonvisual ways (i.e., auditory, and text-to-speech applications, speech-enabled equipment, tactile graphics, and physical artifacts) by which BLV students can conduct their work are described, and practical ways for faculty to enhance teaching are presented.

Da Silva, S., & Hubbard, K. (2024). Confronting the legacy of eugenics and ableism: Towards anti-ableist bioscience education. CBE—Life Sciences Education, 23(3). DOI: https://doi.org/10.1187/cbe.23-10-0195.

Society and education are inherently ableist. Disabled people are routinely excluded from education, or have poorer outcomes within educational systems. Improving educational experiences and outcomes for people of color has required educators to design antiracist curricula that explicitly address racial inequality. Here, we explore parallel antiableist approaches to bioscience education in an essay coauthored by a disabled bioscience student and able-bodied faculty member in bioscience. Our work is underpinned by Critical Disability Theory and draws on disability and pedagogical scholarship as well as our own experiences. The biosciences has a unique need to confront its history in the discredited pseudoscience of eugenics, which has led to discrimination and human rights abuses against disabled people. We provide a brief history of the relationship between biological sciences research and eugenics and explore how this legacy impacts bioscience education today. We then present a recommended structure for antiableist biology education. Our approach goes beyond providing disability access, to a model that educates all students about disability issues and empowers them to challenge ableist narratives and practices.

da Silva Júnior, C., Girotto Júnior, G., Morais, C. & Jesus, D. (2024). Green chemistry for all: Three principles of Inclusive Green and Sustainable Chemistry Education. Pure and Applied Chemistry, 96(9), 1299-1311. DOI: https://doi.org/10.1515/pac-2024-0245.

The three principles of Inclusive Green and Sustainable Chemistry Education (IGSCE) are presented to guide the reflection, design, and implementation of potentially inclusive materials and approaches. These principles refer to (i) embracing student-centered learning, (ii) promoting teaching in the five levels of representation in chemistry, and (iii) adapting the curriculum to empower students to apply their academic skills effectively to real-life situations through supportive teaching and social guidance. Educational elements conducive to potentially inclusive classrooms and their interconnections are identified and discussed. These include using the Triangular Bipyramid Metaphor (TBM) to facilitate academic inclusivity for individuals with and without disabilities, such as those who are deaf and blind. Further, the importance of ensuring that all students, regardless of their abilities, can fully participate in the educational experience is highlighted, aligning with Sustainable Development Goal 4 (SDG #4) to achieve inclusive education and lifelong learning opportunities. Green chemistry should be available to everyone, not just a few. It promotes sustainable development and deserves global recognition and support. The change agents targeted by these three principles of IGSCE include, but are not limited to, educators, researchers, teachers, and students in secondary and university education.

Diele-Viegas, L. M., de Almeida, T. S., Amati-Martins, I. et al. (2022). Community voices: Sowing, germinating, flourishing as strategies to support inclusion in STEM. Nature Communications 13, 3219. DOI: https://doi.org/10.1038/s41467-022-30981-6.

Understanding gaps in academic representation while considering the intersectionality concept is paramount to promoting real progress towards a more inclusive STEM. Here we discuss ways in which STEM careers can be sown and germinated so that inclusivity can flourish.

Duong-Tran, D., & Wei, S., & Shen, L. (2024, June), Theorizing neuro-induced relationships between cognitive diversity, motivation, grit and academic performance in multidisciplinary engineering education context. Paper presented at 2024 ASEE Annual Conference & Exposition, Portland, Oregon. DOI: https://doi.org/10.18260/1-2–48152.

Nowadays, engineers need to tackle many unprecedented challenges that are often complex, and, most importantly, cannot be exhaustively compartmentalized into a single engineering discipline. In other words, most engineering problems need to be solved from a multidisciplinary approach. However, conventional engineering programs usually adopt pedagogical approaches specifically tailored to traditional, niched engineering disciplines, which become increasingly deviated from the industry needs as those programs are typically designed and taught by instructors with highly specialized engineering training and credentials. To reduce the gap, more multidisciplinary engineering programs emerge by systematically stretching across all engineering fibers, and challenge the sub-optimal traditional pedagogy crowded in engineering classrooms. To further advance future-oriented pedagogy, in this work, we hypothesized neuro-induced linkages between how cognitively different learners are and how the linkages would affect learners in the knowledge acquisition process. We situate the neuro-induced linkages in the context of multidisciplinary engineering education and propose possible pedagogical approaches to actualize the implications of this conceptual framework. Our study, based on the innovative concept of brain fingerprint, would serve as a pioneer model to theorize key components of learner-centered multidisciplinary engineering pedagogy which centers on the key question: how do we motivate engineering students of different backgrounds from a neuro-inspired perspective?

Ellis-Robinson, T. (2021). Identity development and intersections of disability, race, and STEM: Illuminating perspectives on equity. Cultural Studies of Science Education, 16, 1149–1162. DOI: https://doi.org/10.1007/s11422-020-10011-x.

In this commentary, I discuss the impetus for the study to examine the effect on connectedness to STEM and equitable outcomes in STEM participation for students who are deaf/hard of hearing, and representative of other marginalized identities. Maggie Renken et al.’s theoretical perspective on identity development, intersectionality, and STEM, provide context for understanding barriers and considering practices for supporting development of a STEM identity and pursuit of STEM-related careers. Attention to identity formation and social components of identity formation are key to the study’s significance. I expound upon an extension of the focus on students’ identity development to include an underlying attention to equity and the redressing of systemic oppressions that have prevented access to STEM in the past. I will suggest deepening of the analysis to go beyond an understanding of the utility of identity formation to unearth systemic barriers that are residually evident in the socially influenced development process and in the professional world of STEM.

Fagerstrom, J. M., Eliason, G., Al-Hallaq, H., Taylor, B. A., Ashraf, M. R., & Viscariello, N. (2024). Improving access in medical physics residency programs for physicists with disabilities. Journal of Applied Clinical Medical Physics, 25(10), e14518. https://doi.org/10.1002/acm2.14518.

Within the landscape of medical physics education, residency programs are instrumental in imparting hands-on training and experiential knowledge to early-career physicists. Ensuring access to educational opportunities for physicists with disabilities is a legal, ethical, and pragmatic requirement for programs, considering that a significant proportion of the United States population has a disability. Grounded in conceptual frameworks of competency-based medical education and the social model of disability, this work provides an introduction to some practical recommendations for medical physics residency programs. Strategies include embracing universal design principles, fostering partnerships with disability service offices, using inclusive language, developing and publicizing clear procedures for disclosing disabilities and requesting accommodations, and maintaining an overall commitment to equitable access to education. This work urges medical physics residency leadership to proactively move towards training environments that support the needs of residents across the spectrum of disability, highlighting why disability inclusion fundamentally enriches diversity.

Fiss, B. G., D’Alton, L., & Noah, N. M. (2023, November 27). Chemistry is inaccessible: How to reduce barriers for disabled scientists. Nature, 623, 913-915. DOI: https://doi.org/10.1038/d41586-023-03634-x.

From classrooms to laboratories and conferences, working in chemistry presents huge challenges to disabled, chronically ill and neurodivergent people. Some simple fixes can help to shift the dial.

Fletcher, N., & Waid, B. (2024, July). Building Communities of Care for Equity, Justice, and Culturally Responsive Practice in Mathematics Education. Journal of Humanistic Mathematics, 14(2), 369-422. DOI: https://doi.org/10.5642/jhummath.ZVWH1822.

Teaching is widely considered one of the “caring professions,” but conceptualizations of care and how care is put into practice in education are not universal. In this article, we draw from a range of perspectives on care that integrate supportive interpersonal relationships, high expectations, and culturally relevant theories of critical care, as well as Queer Theory and Disability Justice, to explore the application of these ideas in mathematics education. We identify key elements for building communities of care in mathematics education contexts: co-constructing community agreements, redefining participation, shifting traditional power structures, collaborative problem solving, and building networks of care beyond the classroom. We share our experiences implementing these elements of communities of care and propose that the integration of these elements can serve as the starting point for a framework for building communities of care for equity, justice, and culturally responsive practice in mathematics education.

Friedensen, R., Lauterbach, A., Kimball, E., & Mwangi, C. G. (2021, Spring). Students with high-incidence disabilities in STEM: Barriers encountered in postsecondary learning environments. Journal of Postsecondary Education and Disability, 34(1), 77-90.

Students with non-apparent, high-incidence disabilities encounter barriers in postsecondary STEM learning environments. These barriers negatively influence their success therein. Using Fishkin’s (2014) theory of bottlenecks within opportunity structures, data from 16 qualitative interviews show how barriers encountered serve to constrain the success of students with disabilities. These barriers exist during the transition to postsecondary STEM learning environments, and arise from peer and faculty behavior, organizational structures, and the alignment of STEM and disability identity. Major implications relate to the redesign of STEM learning environments and the use of bottlenecks as analytic lens for studying the experiences of students with disabilities.

Friedensen, R., Lauterbach, A., Mwangi, C. G., & Kimball, E. (2022). Examining the Role of Family in the Development of Pre-college STEM Aspirations among Students with Disabilities. Journal of Postsecondary Student Success, 1(3), 13–31. DOI: https://doi.org/10.33009/fsop_jpss128231.

In this qualitative cross-case study, we examine the role of familial habitus in providing early access to navigational capital and opportunities predictive of STEM success. Interviews with 18 students with non-apparent disabilities at a large, four-year research university in New England showed that parents and family played a key role in multiple dimensions of student experiences with disability. We organized the findings around three themes about family: (a) family’s framing of disability and academic ability; (b) family support of STEM interests; and (c) family as STEM role models. We extend these findings to highlight the importance of family more broadly, supporting research that indicates the critical role that parental involvement plays in the development of STEM aspirations and success.

Gavrilova, Y., Bogdanova, Y., Orsayeva, R., Khimmataliev, D. & Rezanovich, I. (2021). Peculiarities of training engineering students with disabilities. International Journal of Engineering Pedagogy, 11(4), 148-164. DOI: https://doi.org/10.3991/IJEP.V11I4.21361. 

In this day and age, there are increasing discussions and calls for shifting towards inclusive education. In view of this, the present study intended to identify the most severe challenges disabled engineering students face according to their own view and find possible ways to solve them. For this particular aim, a survey of 555 students from five universities of Russia, Kazakhstan, and Uzbekistan was performed. These were the Bauman Moscow State Technical University, Northern Trans-Ural State Agricultural University, Sarsen Amanzholov East Kazakhstan State University, Tashkent Institute of Irrigation and Agricultural Mechanization Engineers, and South Ural State University. The survey was carried out in two stages. The first focused on identifying the main problems of disabled students (physical environment, staff skills and knowledge, theory-practice relationship, assessment peculiarities, and bias). The second intended to define the most critical of them (unadapted physical environment and reduced abilities to apply theoretical knowledge in practice). To resolve these issues, the authors propose the following recommendations to be adopted. These include adapted laboratories and equipment; programs that allow performing practical tasks; engineering tutors able to assist in performing practical tasks; an adapted assessment system with reference to health condition; psychological support to integrate disabled students into an inclusive team and eliminate prejudices. The obtained research findings can be used by other universities to promote a comprehensive integration of students with special needs into the educational process.

Gin, L. E., Guerrero, F. A., Cooper, K. M., & Brownell, S. E. (2020). Is active learning accessible? Exploring the process of providing accommodations to students with disabilities. In C Brame (Ed.), Special Section on Cross-Disciplinary Research in Biology Education. CBE—Life Sciences Education, 19(4). DOI: https://doi.org/10.1187/cbe.20-03-0049.

On average, active learning improves student achievement in college science courses, yet may present challenges for students with disabilities. In this essay, we review the history of accommodating students with disabilities in higher education, highlight how active learning may not always be inclusive of college science students with disabilities, and articulate three questions that could guide research as the science community strives to create more inclusive environments for undergraduates with disabilities: 1) To what extent do stakeholders (disability resource center [DRC] directors, instructors, and students) perceive that students with disabilities encounter challenges in active learning? 2) What accommodations, if any, do stakeholders perceive are being provided for students with disabilities in active learning? and 3) What steps can stakeholders take to enhance the experiences of students with disabilities in active learning? To provide an example of how data can be collected to begin to answer these questions, we interviewed 37 DRC directors and reported what challenges they perceive that students with disabilities experience in active learning and the extent to which accommodations are used to alleviate challenges. We conclude the essay with a suite of recommendations to create more inclusive active-learning college science classes for students with disabilities.

Gin, L. E., Pais, D., Cooper, K. M., & Brownell, S. E. (2022). Students with disabilities in life science undergraduate research experiences: Challenges and opportunities. CBE Life Science Education, 21, ar32. DOI: https://doi.org/10.1187/cbe.21-07-0196.

Individuals with disabilities are underrepresented in postsecondary science education and in science careers, yet few studies have explored why this may be. A primary predictor of student persistence in science is participating in undergraduate research. However, it is unclear to what extent students with disabilities are participating in research and what the experiences of these students in research are. To address this gap in the literature, in study 1, we conducted a national survey of more than 1200 undergraduate researchers to determine the percent of students with disabilities participating in undergraduate research in the life sciences. We found that 12% of undergraduate researchers we surveyed self-identified as having a disability, which indicates that students with disabilities are likely underrepresented in undergraduate research. In study 2, we conducted semistructured interviews with 20 undergraduate researchers with disabilities. We identified unique challenges experienced by students with disabilities in undergraduate research, as well as some possible solutions to these challenges. Further, we found that students with disabilities perceived that they provide unique contributions to the research community. This work provides a foundation for creating undergraduate research experiences that are more accessible and inclusive for students with disabilities.

Girolamo, T., Castro, N., Eisel Hendricks, A., Ghali, S., & Eigsti, I. (2022, Nov. 21). Implementation of Open Science Practices in Communication Sciences and Disorders Research with Black, Indigenous, and People of Color. Journal of Speech, Language, and Hearing e-Pub Ahead of Issue. DOI: https://doi.org/10.1044/2022_JSLHR-22-00272.

Purpose: Open science that is truly accessible and transparent to all will enhance reproducibility. However, there are ethical and practical concerns in implementing open science practices, especially when working with populations who are systematically excluded from and marginalized in communication sciences and disorders (CSD) research, such as Black, Indigenous, and People of Color (BIPOC) from clinical populations. The purpose of this article was to discuss these concerns and present actionable steps to support open science in CSD research with BIPOC.

Conclusions: In the movement toward open and reproducible science, the discipline of CSD must prioritize accessibility and transparency, in addition to the implementation of individual scientific practices. Such a focus requires building trust with BIPOC not only as research participants but also as valued leaders of the scientific community.

Gordián-Vélez, W. J. (2022). Policy Position Paper: Ensuring the Inclusion of People with Disabilities in STEM Education and Careers. Journal of Science Policy & Governance, 20(2). DOI: https://doi.org/10.38126/JSPG200203.

Achieving full inclusion for people with disabilities in STEM is a matter of national security, economic prosperity, and equity. People with disabilities in STEM are underrepresented in postsecondary degrees and employment and they have higher unemployment rates and earn less. Inaction at the federal level has contributed to perpetuating these disparities. The federal government, especially through a signed law, could provide the funding and mandate to establish the institutional support, resources, and incentives needed so people with disabilities have equitable access to STEM and they can contribute to the scientific and technological innovation the U.S. needs to confront its great challenges. Congress has lately been working to bolster the country’s scientific and technological enterprise and to increase the diversity of our STEM workforce, through HR4521, the America COMPETES Act, and S1260, the U.S. Innovation and Competition Act. Some of these proposals are promising but fail to include provisions specific to people with disabilities. As Congress considers a HR4521/S1260 compromise bill, it has the opportunity to include programs that ensure the inclusion and promote the success of people with disabilities in STEM.

Gregg, N., Wolfe, G., Jones, S., Todd, R., Moon, N., & Langston, C. (2016, Spring). STEM E-mentoring and community college students with disabilities. Journal of Postsecondary Education and Disability, 29(1), 47-63.
This article reports the findings from a qualitative study to understand the provision of electronic mentoring (e-mentoring) to support the educational persistence of students with disabilities at a two-year college in a large city in the U.S. South. Building upon a five-year project at three postsecondary institutions and three secondary school systems, this article presents the results from interviews with selected participants, which were analyzed using a qualitative case study design. Three aspects of a STEM e-mentoring program were examined: (1) the use of virtual environments and social media settings; (2) the development of e-mentoring relationships; and (3) the examination of persistence constructs. Eight participants were recruited for the study representing individuals with disabilities, non-traditional age students, and individuals from minority populations. Four critical findings were observed: (1) virtual environments and social media tool usage varied depending on context, accessibility, and practical considerations; (2) STEM learning and emotional supports were enhanced when embedded in the practice of e-mentoring; and (3) five persistence constructs (intention to persist, self-determination, self-advocacy, science affect, and math affect) informed STEM outcomes for community college students with disabilities.

Hales, K. G. (2020). Signaling inclusivity in undergraduate biology courses through deliberate framing of genetics topics relevant to gender identity, disability, and race. CBE—Life Sciences Education, 19(2). DOI: https://doi.org/10.1187/cbe.19-08-0156.

The study of genetics centers on how encoded information in DNA underlies similarities and differences between individuals and how traits are inherited. Genetics topics covered in a wide variety of undergraduate biology classrooms can relate to various identities held by students such as gender identity, disability, and race/ethnicity, among others. An instructor’s sensitive approaches and deliberate language choices regarding these topics has the potential to make the critical difference between welcoming or alienating students and can set a tone that communicates to all students the importance of diversity. Separating the sperm/egg binary from gendered terms in coverage of inheritance patterns, along with inclusion of transgender people in pedigree charts, may make the classroom more welcoming for students of diverse gender identities. Choosing nonstigmatizing language and acknowledging disability identities in discussions of genetic conditions may help students with visible and invisible disabilities feel validated. Counteracting genetics-based pseudoscientific racism and the stereotype threat to which it contributes may be facilitated by more thorough integration of quantitative and population genetics topics. Instructors may thus potentially enhance retention of students of diverse backgrounds in biology through careful consideration and crafting of how human differences are described and connected with principles of genetics.

Hardin, J., Carter, A., Smith, L., Lama, P., Pasquantonio, A., & Hakim, A. (2024). Perpetuating ableism in engineering education: The role of user abstraction and expertise hierarchies in the design process.” Anthropology & Education Quarterly Early View: e12531. DOI: https://doi.org/10.1111/aeq.12531.

This ethnographic study investigates the teaching and learning of the design process in biomedical engineering classrooms. Through classroom fieldwork, we examine how faculty and students conceptualize and implement the design process, focusing on its linear teaching methods, the abstraction of users, and the reinforcement of expertise hierarchies. Our analysis reveals how these pedagogical practices perpetuate ableist assumptions within engineering education. This research contributes to the understanding of how educational practices in engineering shape professional identities and reinforce systemic biases.

James, W., Lamons, K., Spilka, R., Bustamante, C., Scanlon, E., & Chini, J. J. (2019). Hidden walls: STEM course barriers identified by students with disabilities. arXiv:1909.02905. DOI: https://doi.org/10.48550/arXiv.1909.02905.

Historically, non-disabled individuals have viewed disability as a personal deficit requiring change to the disabled individual. However, models have emerged from disability activists and disabled intellectuals that emphasize the role of disabling social structures in preventing or hindering equal access across the ability continuum. We used the social relational proposition, which situates disability within the interaction of impairments and particular social structures, to identify disabling structures in introductory STEM courses. We conducted interviews with nine students who identified with a range of impairments about their experiences in introductory STEM courses. We assembled a diverse research team and analyzed the interviews through phenomenological analysis. Participants reported course barriers that prevented effective engagement with course content. These barriers resulted in challenges with time management as well as feelings of stress and anxiety. We discuss recommendations for supporting students to more effectively engage with introductory STEM courses.

Kim, H., Ottens, M., Jacob, M., & Qiao, X. (2025). Examining STEM Preferences in Autistic Students: The Role of Contextual Support, Self-Efficacy, and Outcome Expectations. Exceptional Children OnlineFirst. DOI: https://doi.org/10.1177/00144029241312777.

Over recent decades, there has been a significant increase in postsecondary STEM education among autistic individuals. Using data from the High School Longitudinal Study of 2009, this study examined the STEM pathways of autistic students, emphasizing key determinants like proximal context, self-efficacy, and outcome expectations within the framework of social cognitive theory. The results revealed that despite a lower college attendance rate, autistic students displayed a pronounced inclination for STEM majors, particularly in the fields of science, engineering, and mathematics. Notably, autistic students who pursue higher education tend to exhibit increased levels of self-efficacy and anticipate more positive outcomes within STEM disciplines. However, the levels of both constructs in mathematics had decreased by the 11th grade. Nonetheless, STEM self-efficacy played a significant role in influencing outcome expectations and major choices, with this relationship being more pronounced among autistic students. For autistic students, their choice of a STEM major was influenced by their self-efficacy, as well as factors like race and gender. On the other hand, for non-autistic students, their proximal context was an additional determinant in their decision. Insights gained from this research can inform educational strategies aimed at facilitating the participation of autistic individuals in postsecondary STEM education and related career paths.

Kingsburg, C. G., Silbert, E. C., Killingback, Z., & Atchison, C. L. (2020). “Nothing about us without us:” The perspectives of autistic geoscientists on inclusive instructional practices in geoscience education. Journal of Geoscience Education, 68(4), 302-310. DOI:  https://doi.org/10.1080/10899995.2020.1768017.

Increasingly more students with disabilities, including autistic or otherwise neurodiverse students, are studying for degrees in STEM field subjects. In recent years, there has been an increased effort from the geoscience education community to make teaching more accessible and inclusive to these students. However, much of the literature on this topic lacks the voice of the individuals these practices aim to serve. This, combined with the medical, deficit-based understanding of autism typically presented in the literature, has resulted in the perpetuation of harmful stereotypes, along with recommendations that may not actually serve as best practice. Here we present a more accurate and holistic explanation of what autism actually is, using our lived experiences as autistic geoscientists. We then outline a comprehensive framework for best supporting autistic and neurodiverse geoscience students, with a focus on field-based learning. This framework includes three pillars: (a) develop effective communication pathways with autistic students, (b) presume competence and include autistic students in the planning of their own accommodations, and (c) employ strategies for expectation management. We also touch on the importance of recognizing the sensory processing aspects of autism spectrum conditions and suggest strategies for minimizing these difficulties in a field environment. By centering autistic voices in the discussion of how to support autistic geoscience students, we hope to change the narrative of inclusion for this diverse, but significant population.

Kohnke, S., & Zaugg, T. (2025). Artificial Intelligence: An Untapped Opportunity for Equity and Access in STEM Education. In L. Dieker, E. Vasquez., & M. T. Marino (Eds.), Application of AI Technologies in STEM Education [Special Issue]. Education Sciences, 15(1), 68. DOI: https://doi.org/10.3390/educsci15010068.

Artificial intelligence (AI) holds tremendous potential for promoting equity and access to science, technology, engineering, and mathematics (STEM) education, particularly for students with disabilities. This conceptual review explores how AI can address the barriers faced by this underrepresented group by enhancing accessibility and supporting STEM practices like critical thinking, inquiry, and problem solving, as evidenced by tools like adaptive learning platforms and intelligent tutors. Results show that AI can positively influence student engagement, achievement, and motivation in STEM subjects. By aligning AI tools with Universal Design for Learning (UDL) principles, this paper highlights how AI can personalize learning, improve accessibility, and close achievement gaps in STEM content areas. Furthermore, the natural intersection of STEM principles and standards with the AI4K12 guidelines justifies the logical need for AI–STEM integration. Ethical concerns, such as algorithmic bias (e.g., unequal representation in training datasets leading to unfair assessments) and data privacy risks (e.g., potential breaches of sensitive student data), require critical attention to ensure AI systems promote equity rather than exacerbate disparities. The findings suggest that while AI presents a promising avenue for creating inclusive STEM environments, further research conducted with intentionality is needed to refine AI tools and ensure they meet the diverse needs of students with disabilities to access STEM.

Kwong, E., & Lu, T. (2021, May 28). Short wave: Disabled scientists are often excluded from the lab.  National Public Radio [Website]. 

“Scientists and students with disabilities are often excluded from laboratories — in part because of how they’re designed. Emily Kwong speaks to disabled scientist Krystal Vasquez on how her disability changed her relationship to science, how scientific research can become more accessible, and how STEM fields need to change to be more welcoming to disabled scientists.”

Lawler, J. (2024). A Case Study for Enabling Autistic Students to Enter Best-of-Class Career Programs in Science, Technology, Engineering, and Mathematics (STEM). The Coastal Business Journal, 20(1), Art. 2.

Colleges can better engage autistic students. Autistic students can especially excel if colleges have a better model for growth opportunities in STEM. In this paper, in this first phase of study, the author contributes a model for best-of-class post-secondary education programs in science, technology, engineering and mathematics (STEM) for autistic entrepreneurial students. The model enables autistic students, and non-profit organizations advocating for them, in evaluating features of post-secondary education programs in STEM. The model of this paper is a foundation for helping autistic students to enter fruitfully into professions in society.

Lee, Y., Davis, M., Lopez, E., Yakubova, G., & Cumming, I. (2024). Preparing students with intellectual disability for science, technology, engineering, and math careers. Including Disability, 4, 1–14. https://doi.org/10.51357/id.v4i.258.

Research indicates that outcomes for individuals with intellectual disability in post-secondary education (PSE), employment, and independent living lag in comparison to the general population. Students with disabilities, particularly those with intellectual disability, are underrepresented in science, technology, engineering, and mathematics (STEM) careers and face barriers in accessing STEM courses and career opportunities. Furthermore, students with intellectual disability are disproportionately affected by the impact of unemployment and underemployment and overall quality of life. Providing students with intellectual disability with opportunities for STEM instruction and access to STEM careers could help them with employment in the field. Therefore, the call exists for researchers, practitioners, and policy makers to strengthen employment pathways for individuals with intellectual disability to find and maintain competitive employment, including STEM careers. This paper discusses potential barriers for individuals with intellectual disability in their pursuit of a career in STEM and offers recommendations for addressing the identified issues.

Leigh, J., Sarju, J., & Slater, A. (2024). Can science be inclusive? Belonging and identity when you are disabled, chronically ill or neurodivergent. In C. Kandiko Howson & M. Kingsbury (Eds.), Belonging and Identity in STEM Higher Education (pp. 269-291). London: UCL Press.

“Belonging and identity in any aspect of science, technology, engineering and maths (STEM) education must be addressed intersectionally. The barriers and challenges that an individual experiences from any one protected characteristic (such as disability, chronic illness, neurodivergence, race, ethnicity, religion, sexuality or gender) cannot be considered in isolation. In this chapter we present a series of case studies, and focus on how STEM laboratories can and should be managed to ensure that they are inclusive of students and staff who are disabled, chronically ill, neurodivergent or a combination of those” (p. 269).

Limas, J. C., Corcoran, L. C., Baker, A. N., Cartaya, A. N., & Ayres, Z. S. (2022). The impact of research culture on mental health & diversity in STEM. Chemistry: A European Journal Early View. DOI: https://doi.org/10.1002/chem.202102957.

This paper focuses on key aspects of academic research culture that can impact STEM researcher mental health: bullying and harassment; precarity of contracts; diversity, inclusion, and accessibility; and the competitive research landscape, as well as exploring why mental health matters for researchers. Further, key recommendations are provided and actionable steps are outlined that institutions can take to make research in STEM inclusive for all.

The onset of COVID-19, coupled with the finer lens placed on systemic racial disparities within our society, has resulted in increased discussions around mental health. Despite this, mental health struggles in research are still often viewed as individual weaknesses and not the result of a larger dysfunctional research culture. Mental health interventions in the science, technology, engineering, and mathematics (STEM) academic community often focus on what individuals can do to improve their mental health instead of focusing on improving the research environment. In this paper, we present four aspects of research that may heavily impact mental health based on our experiences as research scientists: bullying and harassment; precarity of contracts; diversity, inclusion, and accessibility; and the competitive research landscape. Based on these aspects, we propose systemic changes that institutions must adopt to ensure their research culture is supportive and allows everyone to thrive.

Link, A. J. (2024, May). An Accessible Future. In D. Norman, T. Sacco, & D. Russell (Eds.), An Astronomical Inclusion Revolution Advancing Diversity, Equity, and Inclusion in Professional Astronomy and Astrophysics (pp. 3-1 – 3-6). Bristol, UK: IOP Publishing Ltd. DOI: https://doi.org/10.1088/2514-3433/ad2174ch3.

What does it mean when we make the claim that the future should be accessible? How far into the future do we have to travel before we live in an accessible world? What does a truly accessible world look and sound and feel like? What will the experiences in an accessible future be? And how will we know that the world is accessible? As someone working on Space Law and Outer Space communication, these are questions that I think about daily. In my work, I try to center accessibility and the needs of folks who do not have access to the spaces and places where so many incredible things are happening within the space industry and the broader space community. My background is in disability rights policy work and disability justice organizing through various disability-led nonprofits, however the idea of access and creating an Accessible Future goes so far beyond disability inclusion as part of our diversity initiatives, and requires a radical reimagining of the futures we want to create.

Marjadi, M. N., Smith, R. A., Tu, H. F., Ajmani, A. M., Holland, A. R., Lopez, B. E., Morelli, T. L., & Bradley, B. A. (2025). Centering voices of scientists from marginalized backgrounds to understand experiences in climate adaptation science and inform action. PLOS One. DOI: https://doi.org/10.1371/journal.pone.0318438.

Identifying and building solutions to help people and ecosystems adapt to climate change requires participation of all people; however, Science, Technology, Engineering, and Mathematics (STEM) fields, including environmental sciences, continue to lack diversity. To address this issue, many institutions have increased programming to recruit and retain people from historically marginalized backgrounds in STEM fields. Institutions use surveys to evaluate the experiences of community members and identify areas for improvement; however, surveys often summarize and reflect majority perspectives and disregard voices of historically marginalized individuals. In June 2021, a survey of graduate students, postdocs, faculty, staff, and researchers affiliated with the Northeast Climate Adaptation Science Center (NE CASC) evaluated their experiences of diversity, equity, inclusion, and justice (DEIJ) using Likert-based and long-answer questions. We analyzed the results as a whole, but also focused on the responses of people who self-identified as members of a marginalized group (“marginalized respondents”) in climate adaptation science to center their voices. Marginalized respondents reported being motivated to enter climate adaptation science to improve society and the environment rather than for intellectual curiosity, which motivated one third of non-marginalized respondents. Once in science, marginalized respondents reported feeling less supported and comfortable at work and were more likely to have considered leaving science and academia in the last year. Long-answer responses of marginalized respondents indicated distrust in the ability of leadership and existing DEIJ initiatives to effectively tackle systemic issues and emphasized the importance of focusing on equity and inclusion before recruitment. Marginalized respondents identified additional funding to support existing DEIJ efforts and undergraduates as priorities. By allowing participants to self-identify as part of a marginalized group, we were able to highlight experiences and needs without risking exposure based on race, gender, disability status, or sexual orientation. This approach can be applied to other small organizations with limited demographic diversity.

Mattison, S. M., Gin, L., Abraham, A. A.,Moodie, M., Okanlami, F., & Wander, K. (2022). Community voices: Broadening participation in Science, Technology, Engineering, Mathematics, and Medicine among persons with disabilities. Nature Communications, 13(7208). DOI: https://doi.org/10.1038/s41467-022-34711-w.

Disability has too often been peripheral to efforts to widen the STEMM pipeline, hampering research quality and innovation. Inspired by change in education delivery and research collaborations during the pandemic, we offer a structure for efforts to recruit and retain disabled scientists and practitioners.

McCall, C., Shew, A., Simmons, D. R., Paretti, M. C., & McNair, L. D. (2020). Exploring student disability and professional identity: navigating sociocultural expectations in U.S. undergraduate civil engineering programs. Australasian Journal of Engineering Education, 25(1), 79-89. DOI: https://doi.org/10.1080/22054952.2020.1720434.

National agencies throughout Australia and the United States (U.S.) have called for broadened participation in engineering, including participation by individuals with disabilities. However, studies demonstrate that students with disabilities are not effectively supported by university systems and cultures. This lack of support can shape how students form professional identities as they move through school and into careers. To better understand these experiences and create a more inclusive environment in engineering, we conducted a constructivist grounded theory exploration of professional identity formation in students who identify as having a disability as they study civil engineering and experience their first year of work. We conducted semi-structured interviews with 24 undergraduate civil engineering students across the U.S. and analysed them using grounded theory techniques. Navigating sociocultural expectations of disability emerged as one key theme, consisting of three strategy types: (1) neutrally satisfying expectations, (2) challenging expectations, and (3) aligning with expectations. Regardless of strategy, all participants navigated sociocultural expectations related to their studies and their disabilities. This theme highlights the ways sociocultural influences impact students’ navigation through their undergraduate civil engineering careers. These findings can be used to examine cultural barriers faced by students with disabilities to enhance their inclusion in engineering.

McCullough, B., Bellman, S., Buck, A., Jenda, O., Jenson, R., Marghitu, D., Massey-Garrett, T., Petri, A., Pettis, C., Shannon, D., Takahashi, K. & Traiger, J. (2024). NSF Eddie Bernice Johnson INCLUDES Initiative: TAPDINTO-STEM National Alliance for Students with Disabilities in STEM, An Innovative Intersectional Approach of Diversity, Equity, and Inclusion for Students with Disabilities. In M. Antona & C. Stephanidis (Eds.), Universal Access in Human-Computer Interaction HCII 2024 Lecture Notes in Computer Science, Vol 14698. Springer, Cham. https://doi.org/10.1007/978-3-031-60884-1_8.

Persons with disabilities are one of the most significantly underrepresented groups in STEM education and employment, comprising a disproportionately smaller percentage of STEM degrees and jobs compared to their percentages in the U.S. population [1]. TAPDINTO-STEM employs a collective impact approach with dozens of partnering institutions to increase the number of students with disabilities (SWDs) who complete associate, baccalaureate and graduate STEM degrees and enter the STEM workforce.

McDermott, L. G., Mosley, N. A. & Cochran, G. L. (2024, February). Diverging nonlocal fields: Operationalizing critical disability physics identity with neurodivergent physicists outside academia. Physical Review Physics Education Research, 20(1), 010111. DOI: https://doi.org/10.1103/PhysRevPhysEducRes.20.010111.

Science, technology, engineering, and mathematics (STEM) education research and physics education research, in particular, are currently struggling with a dearth of research into understanding the experiences and identity development of neurodivergent students. In addition, an even larger gap in research exists looking into nonacademic members who have left the field and still strongly identify with their disciplinary identity. As valued members of our physics community, these colleagues provide a unique perspective as to how identity and participation are nurtured and developed, particularly among rising disabled physicists. To resolve these current issues and aid in future research, we operationalize our new Critical Disability Physics Identity framework and present results from interviews with three neurodivergent post-baccalaureate nonacademic physicists (those who have left physics and retain a strong affinity toward their identity as a physicist). As the first paper in a four-part phenomenological study into the identity development of neurodivergent physicists, we also present an analysis of each interview through a Critical Disability Physics Identity lens and discuss the implications of their Critical Disability Physics Identity development. We find that neurodivergent students experience very little outright discrimination and violence but experience structural ableism in the form of assessment that is not constructed for how neurodivergent physicists perform physics-related tasks. Additionally, we find that neurodivergent physicists seem to ground identity in having a strong interest in physics, something that is only shaken by professors and others in power being neutral toward the discrimination experienced by neurodivergent people. We find that there are very large power imbalances between professors and neurodivergent students and that only when professors and others in power are actively anti-ableist is this power imbalance remedied and neurodivergent students begin to feel that they are physicists.

McDermott, L. G., & Oleynik, D. P.  (2023). Neuroqueer literacies in a physics Context: A discussion on changing the physics classroom using a neuroqueer literacy framework. arXiv physics, 2309.04424v1. DOI: https://doi.org/10.48550/arXiv.2309.04424.

Life experience, identity, the relationship between ourselves and the world around us among others, all affect and shape how we, as scientists, construct knowledge. Neurodiversity, the diversity of minds, is an interesting concept when keeping this in mind. Being neurodivergent, or neuroqueer (the viewing of being neurodivergent as a queer thing, along with the intersection of neurodiversity and queerness), means having non-neurotypical ways of perceiving and interacting with the world, and especially of creating knowledge about the rules and regulations, both natural and societal, that govern it locally and broadly. Neuroqueer physicists, therefore, have unique non-normative ways of doing physics, the study of the rules (which is done societally) which govern the natural world. It is imperative that, when teaching neurodivergent students, we encourage and support this non-normative way of thinking about physics, and help them do physics in ways that they will be successful, and support the development of Neuroqueer (Scientific) Literacies, from Kleekamp’s and Smilges’s works on literacy. We here present a brief overview of Neuroqueer Literacies and how to apply them in the physics classroom.

McDonald, N., Massey, A. & Hamidi, F. (2021, December). AI-Enhanced Adaptive Assistive Technologies: Methods for AI Design Justice. In S. Pan & J. Foulds (Eds.), Responsible AI and Human-AI Interaction [Special Issue]. Bulletin of the Technical Committee on Data Engineering, 44(4), 3-13.

The design of artificial intelligent (AI) enhanced adaptive assistive technologies (AATs) presents exciting promise for those with motor or audio/vision impairment. However, these technologies also introduce tremendous privacy risks, particularly for those with compounding identity vulnerabilities. In this paper, we reflect on why and how AATs need to be designed in collaboration with intersectional AAT users to
ensure that the benefits of AI do not sacrifice privacy for the most vulnerable. We discuss methods and tools we have developed to meet these challenges, lessons we have learned from studies with them, and future opportunities.

Meghdari, A., & Alemi, M.  (2020, June 26). STEM teaching-learning communication strategies for Deaf students. RAIS: Research Association for Interdisciplinary Studies. DOI: https://doi.org/10.5281/zenodo.3909869.

Language is one of the most important features of humanity and an essential element of human existence. Sign language is a solution to meet the verbal and communication needs of the Deaf community as the many spoken languages meet the communication needs of the hearing community. Since unique skills and life experiences shape scientists, each researcher has their own perspective on research endeavors. Consequently, the diversity of life and cultural experiences among scientists has led to the expansion of research directions, and accordingly, to scientific inventions and discoveries. Deaf people, for example, have been successful prospects in scientific research and discoveries. However, the Deaf continue to face challenges in academic science and engineering education. Most Deaf students in Science, Technology, Engineering, and Mathematics (STEM) associate with professors who have little experience working with Deaf people and often lack an awareness of Deaf people and their culture. A lack of access to the necessary communication skills can often cause Deaf students to feel dissatisfied or unable to study basic science and engineering subjects. This paper attempts to provide some key solutions to support Deaf students in science and engineering using a descriptive-analytical approach, reviewing the evidence, opinions, and experiences of Deaf experts and scientists. In this study, we discuss potential topics for teaching and coaching research suitable to the Deaf academic environment, concerning the layout of class and chairs, and also point out the importance of Deaf/hard of hearing scientists in deaf-related research. In addition, we address the need and impact of general and specialized sign language instruction in university curricula to enhance the communication skills of interested graduates in the face of the Deaf community.

Mendelson III, J. R. (2022). Letters to the Editor: What happens when a field biologist becomes disabled? Herpetological Review, 53(1), 64–66.

“What happens when fieldwork goes away? What happens when a field biologist suddenly becomes disabled?” (p. 64).

Mercer-Mapstone, L., Banas, K., Davila, Y., Huston, W., Meier, P., & Mekonnen, B. (2021). ‘I’m not alone’: outcomes of a faculty-wide initiative for co-creating inclusive science curricula through student–staff partnership. International Journal for Academic Development Ahead-of-Print. DOI: https://doi.org/10.1080/1360144X.2021.1988618.

We explored the experiences of and outcomes for students and staff working in partnership on an academic development project aiming to enhance the inclusivity of science curricula across a faculty. Quantitative survey data revealed changes in student and staff perceptions, including increases in sense of belonging for both, perceptions of fairness in decision-making for students, and increased adoption of inclusive teaching practices for staff. Open responses articulated the benefits and challenges of the project. Implications of this research will be relevant to academic developers working in similar spaces, such as decolonising the curriculum or engaging students as partners in development work.

Mikropoulos, T. A., & Iatraki, G. (2022). Digital technology supports science education for students with disabilities: A systematic review. Education and Information Technologies. DOI: https://doi.org/10.1007/s10639-022-11317-9.

Students with disabilities are being encouraged to achieve high academic standards in science education to understand the natural world, acquire life skills, and experience career success. To this end, digital technology supports students with disabilities in order for them to achieve science literacy. While relevant research has presented evidence-based practices to teach science content, the role of technology has yet to be clearly defined in teaching and learning processes. This article presents a systematic literature review on the contribution of technology in science education for students with disabilities. A total of 21 journal articles, during the 2013–2021 period, were identified after an exhaustive search in academic databases. The educational context and learning outcomes of these 21 empirical studies were analyzed. The results show that increased motivation was the main contribution for using digital technology in science education. Positive learning outcomes likely depend on the way digital technology is used, i.e., affordances of each specific technological implementation. Digital technology and its affordances are recommended among other quality indicators for evidence-based research designs in digitally supported learning environments for students with disabilities.

Morgan, J. D. (2023, August). Disability and developmental biology. Development, 150(16), dev201905. DOI: https://doi.org/10.1242/dev.201905.

Disabled scientists face tremendous barriers to entry into, and progression within, a scientific career, remaining immensely under-represented at every career stage. Disability inclusivity drives in science are increasingly prevalent, but few data are available from the developmental biology community specifically. The Young Embryologist Network sought to draw attention to this by platforming disability inclusivity as a key theme at the 2022 conference. Here, I review literature exploring disabled scientists’ experiences in academia, report findings from the conference attendee survey and spotlight a new disability support grant from the British Society for Developmental Biology. I also highlight specific unmet needs and suggest educational resources and actionable measures in the hope of improving the experiences of disabled scientists in our community.

National Academies of Sciences, Engineering, and Medicine. (2024). Disrupting ableism and advancing STEM: Promoting the success of people with disabilities in the STEM workforce: Proceedings of a workshop series. Washington, DC: The
National Academies Press. DOI: https://doi.org/10.17226/27245.

People with disabilities are the largest minority group in the United States. While nothing about science, technology, engineering, and mathematics (STEM) education, jobs, or workplaces would seem to inherently exclude people with disabilities, in practice, stigma and discrimination continue to limit opportunities for disabled people to fully contribute to and be successful in the STEM ecosystem. The planning committee for Beyond Compliance: Promoting the Success of People with Disabilities in the STEM Workforce of the National Academies of Sciences, Engineering, and Medicine, with funding from the U.S. National Science Foundation, organized a hybrid national leadership summit and virtual workshop series to address and explore issues of accessibility and inclusivity in STEM workplaces. Across the 5 days of workshops, dozens of panelists spoke about their personal and professional experiences of ableism and barriers to full participation in the STEM workforce, as well as identified positive examples of mentorship and efforts to create fully inclusive STEM spaces in education, labs, the private sector, and professional development settings.

National Center for Science and Engineering Statistics (NCSES). (2023). Diversity and STEM: Women, minorities, and persons with disabilities 2023 [Special Report NSF 23-315]. Alexandria, VA: National Science Foundation.

A diverse workforce provides the potential for innovation by leveraging different backgrounds, experiences, and points of view. Innovation and creativity, along with technical skills relying on expertise in science, technology, engineering, and mathematics (STEM), contribute to a robust STEM enterprise. Furthermore, STEM workers have higher median earnings and lower rates of unemployment compared with non-STEM workers. This report provides high-level insights from multiple data sources into the diversity of the STEM workforce in the United States.

Nieminen, J. H., & Pesonen, H. V. (2020). Taking universal design back to its roots: Perspectives on accessibility and identity in undergraduate mathematics. In S. Staats & A. Lee (Eds.), Increasing Participation in Higher Education STEM Programs: Practices, Policies, Pedagogies to Disrupt Exclusion [Special Issue]. Education Sciences, 10(1),12. DOI: https://doi.org/10.3390/educsci10010012.

Universal Design has been promoted to address the diversity of learners in higher education. However, rarely have Universal Design implementations been evaluated by listening to the voices of disabled students. For this study, we investigated the perceptions of three disabled students who took part in an undergraduate mathematics course designed with the principles of Universal Design for Learning and Assessment. The study consists of two parts. First, we observed the experiences students had in relation to the accessibility of the course design. The second part consisted of a further analysis of the students identifying processes to understand how they talked about their learning disabilities during the course. Our results highlight many opportunities and challenges that the course offered to the students, whilst also raising concerns about how the students excluded themselves from their student cohort in their identifying narratives. Based on our results, we argue that Universal Design should be returned to its roots by connecting it with the social model of disability. We call for future research to learn from our mistakes and consider the identifying processes of the students while designing, and hopefully co-designing, inclusive learning environments in mathematics.

Nieminen, J.H., Reinholz, D.L. & Valero, P. (2024). “Mathematics is a battle, but I’ve learned to survive”: Becoming a disabled student in university mathematics. Educational Studies in Mathematics, 116, 5–25. DOI: https://doi.org/10.1007/s10649-024-10311-x.

In university mathematics education, students do not simply learn mathematics but are shaped and shape themselves into someone new—mathematicians. In this study, we focus on the becoming of disabled mathematical subjects. We explore the importance of abilities in the processes of being and becoming in university mathematics. Our interest lies in how teaching and assessment practices provide students with ways to understand themselves as both able and disabled, as disabilities are only understood with respect to the norm. We analyse narratives of nine university students diagnosed with learning disabilities or mental health issues to investigate how their subjectivity is constituted in discourse. Our analysis shows how the students are shaped and shape themselves as disabled mathematicians in relation to speed in mathematical activities, disaffection in mathematics, individualism in performing mathematics, and measurability of performance. These findings cast light on the ableist underpinnings of the teaching and assessment practices in university mathematics education. We contend that mathematical ableism forms a watershed for belonging in mathematics learning practices, constituting rather narrow, “normal” ways of being “mathematically able”. We also discuss how our participants challenge and widen the idea of an “able” mathematics student. We pave the way for more inclusive futures of mathematics education by suggesting that rather than understanding the “dis” in disability negatively, the university mathematics education communities may use dis by disrupting order. Perhaps, we ask, if university mathematics fails to enable accessible learning experiences for students who care about mathematics, these practices should indeed be disrupted.

Nishchyk, A., & Chen, W. (2018, January). Integrating Universal Design and Accessibility into Computer Science Curricula – A Review of Literature and Practices in Europe. Studies in Health Technology and Informatics, 256, 56-66. DOI: https://doi.org/10.3233/978-1-61499-923-2-56.

The absence of accessibility in many ICT systems and products indicates insufficient accessibility competence among designers, developers and project managers. Higher education institutions play an important role in raising awareness and competence and in preparing universal design and digital accessibility specialists. Although many universities are teaching accessibility as part of the biomedical, special education and disability studies programmes, few provide accessibility education in technical specialisations such as computer science. By combining literature review and manual search and inspection we aim at investigating the state of the art in integrating universal design and digital accessibility into the curricula of computer sciences-related programmes.

Nix, K. N., Seals, C. D., & DeLoach, K. D. (2024). Neurodiverse Minds in STEM: A Literature Review Exploring the Link between Representation and School Adaptation. In A. Rodríguez-Fernández & I. Izar-de-la-Fuente (Eds.), Physical and Mental Health and School Adjustment – Contextual, Psychological Variables and Performance in School Settings. IntechOpen. doi: https://doi.org/10.5772/intechopen.1007854.

Neurodiversity is a term used to describe the wide range of neurological differences among individuals, particularly in comparison to those considered neurotypical. These neurological differences may include conditions such as autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), dyslexia, and others. Despite the unique perspectives and strengths that neurodiverse individuals may bring, under-representation in STEM fields often occurs due to the challenges faced in these areas. As part of this chapter, the literature on neurodiverse minds is reviewed, highlighting how the lack of representation in STEM fields and insufficient understanding of their conditions can adversely affect adjustment or adaptation to school. Moreover, the possibility of neurodiverse talent in STEM fields is increased through enhanced awareness, support, and inclusion.

Orndorf, H. C., Waterman, M.,. Lange, D., Kavin, D., Johnston, S. C., & Jenkins, K. P. (2022). Opening the Pathway: An Example of Universal Design for Learning as a Guide to Inclusive Teaching Practices. CBE—Life Sciences Education, 21(2). DOI: https://doi.org/10.1187/cbe.21-09-0239.

Universal Design for Learning (UDL) provides a flexible framework for supporting a wide variety of learners. We report here on a conference that presented the UDL framework as a way to increase success of deaf and hard-of-hearing (deaf/hh) students in introductory biology courses. The Opening the Pathway conference was an NSF Advanced Technological Education project focusing on raising awareness about careers in biotechnology and student success in introductory biology, a key gateway course for careers in biotechnology. The participants were professionals who work with deaf/hh students at pivotal points in students’ educational pathways for raising awareness of biotechnology career options, including community college faculty, high school faculty at schools for the deaf, and American Sign Language (ASL) interpreters. The conference goal was to provide an effective, meaningful professional development experience in biology instruction. The conference explicitly addressed the role of a UDL approach in building accessible, inclusive, productive learning environments, particularly for deaf/hh students, and demonstrated how to make effective pedagogical practices, specifically case-based learning, inclusive and UDL-aligned in an introductory biology context. We describe the conference, conference outcomes for participants, and in particular the application of the UDL framework to create an inclusive experience.

Pérez-Montero, E., Barnés-Castaño, C., & Garcí a López-Caro, E. (2022). Audio description and other inclusive resources in the outreach project Astroaccesible. arXiv:2206.09703 [astro-ph.IM]. DOI: https://doi.org/10.48550/arXiv.2206.09703.

Astroaccesible is an outreach project hosted by the Instituto de AstrofÍ sica de AndalucÍ a – CSIC and leaded by a blind astronomer aimed at the teaching and popularisation of astronomy and astrophysics among all kind of disabled and non-disabled people. Among the different strategies followed to transmit information to blind and partially sighted people, audio description is one of the most accessible and popular in the case of films and museums, but it has not been yet widely incorporated for the description of astronomical images. In this contribution we introduce {“The Universe in words”, which are a series of videos describing images of some of the most popular objects in the Messier catalogue. These audio descriptions do not only have a clear inclusive aspect, but also imply a better and deeper understanding of the represented images for everybody. This is one of the most important aspects of using inclusive resources, as they also clearly improve the efficiency of the transmission process for all kind of public. These videos can also be used as supplementary material in of in-person activities and as a complement to other kind of materials, such as sonifications or models of the same or similar type of astronomical objects.

Pester, C. W., Noh, G., & Fu, A. (2023). On the importance of mental health in STEM. ACS Polymers Au. DOI: https://doi.org/10.1021/acspolymersau.2c00062.

From homework to exams to proposal deadlines, STEM academia bears many stressors for students, faculty, and administrators. The increasing prevalence of burnout as an occupational phenomenon, along with anxiety, depression, and other mental illnesses in the STEM community is an alarming sign that help is needed. We describe common mental illnesses, identify risk factors, and outline symptoms. We intend to provide guidance on how some people can cope with stressors while also giving advice for those who wish to help their suffering friends, colleagues, or peers. We hope to spark more conversation about this important topic that may affect us all─while also encouraging those who suffer (or have suffered) to share their stories and serve as role models for those who feel they cannot speak.

Peterson, R. J. (2021, April). We need to address ableism in science. Molecular Biology of the Cell, 32(7), 507-510. DOI: https://doi.org/10.1091/mbc.E20-09-0616.

In science, technology, engineering, and mathematics (STEM) fields, disabled people remain a significantly underrepresented part of the workforce. Recent data suggests that about 20% of undergraduates in the United States have disabilities, but representation in STEM fields is consistently lower than in the general population. Of those earning STEM degrees, only about 10% of undergraduates, 6% of graduate students, and 2% of doctoral students identify as disabled. This suggests that STEM fields have difficulty recruiting and retaining disabled students, which ultimately hurts the field, because disabled scientists bring unique problem-solving perspectives and input. This essay briefly explores the ways in which ableism—prejudice against disabled people based on the assumption that they are “less than” their nondisabled peers—in research contributes to the exclusion of disabled scientists and suggests ways in which the scientific community can improve accessibility and promote the inclusion of disabled scientists in academic science.

Pfeifer, M. A., Cordero, J. J., & Dangremond Stanton, J. (2022). What I Wish My Instructor Knew: How Active Learning Influences the Classroom Experiences and Self-Advocacy of STEM Majors with ADHD and Specific Learning Disabilities. CBE—Life Sciences Education, 22(1). DOI: https://doi.org/10.1187/cbe.21-12-0329.

Our understanding of how active learning affects different groups of students is still developing. One group often overlooked in higher education research is students with disabilities. Two of the most commonly occurring disabilities on college campuses are attention-deficit/hyperactivity disorder (ADHD) and specific learning disorders (SLD). We investigated how the incorporation of active-learning practices influences the learning and self-advocacy experiences of students with ADHD and/or SLD (ADHD/SLD) in undergraduate science, technology, engineering, and mathematics (STEM) courses. Semistructured interviews were conducted with 25 STEM majors with ADHD/SLD registered with a campus disability resource center at a single university, and data were analyzed using qualitative methods. Participants described how they perceived active learning in their STEM courses to support or hinder their learning and how active learning affected their self-advocacy. Many of the active-learning barriers could be attributed to issues related to fidelity of implementation of a particular active-learning strategy and limited awareness of universal design for learning. Active learning was also reported to influence self-advocacy for some participants, and examples of self-advocacy in active-learning STEM courses were identified. Defining the supports and barriers perceived by students with ADHD/SLD is a crucial first step in developing more-inclusive active-learning STEM courses. Suggestions for research and teaching are provided.

Pfeifer, M. A., Reiter, E. M., Cordero, J. J., & Dangremond Stanton, J. (2021, June). Inside and Out: Factors That Support and Hinder the Self-Advocacy of Undergraduates with ADHD and/or Specific Learning Disabilities in STEM. CBE—Life Sciences Education, 20(2). https://doi.org/10.1187/cbe.20-06-0107.

Self-advocacy is linked to the success and retention of students with disabilities in college. Self-advocacy is defined as communicating individual wants, needs, and rights to determine and pursue required accommodations. While self-advocacy is linked to academic success, little is known about how students with disabilities in science, technology, engineering, and mathematics (STEM) practice self-advocacy. We previously developed a model of self-advocacy for STEM students with attention-deficit/hyperactivity disorder (ADHD) and/or specific learning disabilities (SLD). Here, we use this model to examine what factors support or hinder self-advocacy in undergraduate STEM courses. We conducted semistructured interviews with 25 STEM majors with ADHD and/or SLD and used qualitative approaches to analyze our data. We found internal factors, or factors within a participant, and external factors, the situations and people, described by our participants, that influenced self-advocacy. These factors often interacted and functioned as a support or barrier, depending on the individuals and their unique experiences. We developed a model to understand how factors supported or hindered self-advocacy in STEM. Supporting factors contributed to a sense of comfort and security for our participants and informed their perceptions that accommodation use was accepted in a STEM course. We share implications for research and teaching based on our results.

Pfeifer, M. A., Reiter, E. M., Hendrickson, M., & Dangremond Stanton, J. (2020). Speaking up: a model of self-advocacy for STEM undergraduates with ADHD and/or specific learning disabilities. International Journal of STEM Education, 7, Art. 33. DOI: https://doi.org/10.1186/s40594-020-00233-4.

Background: Students with disabilities are underrepresented in undergraduate science, technology, engineering, and mathematics (STEM) courses. Students with disabilities who engage in self-advocacy earn higher GPAs and are more likely to graduate from college compared to students with disabilities who do not engage in self-advocacy. We utilized Test’s conceptual framework of self-advocacy, which breaks self-advocacy into four components: knowledge of self, knowledge of rights, communication, and leadership to investigate how students with invisible disabilities practice self-advocacy in undergraduate STEM courses. Through a partnership with a disability resource center (DRC), we recruited and interviewed 25 STEM majors who received accommodations for attention-deficit/hyperactivity disorder (ADHD) and/or a specific learning disorder (SLD). Data were collected using semi-structured interviews and analyzed using content analysis.

Results: We found evidence of all components of Test’s conceptual framework of self-advocacy and operationalize each based on our participants’ experiences. We identified novel components of self-advocacy for students with ADHD/SLD in undergraduate STEM courses, including knowledge of STEM learning contexts and knowledge of accommodations and the process to obtain them, as well as, a novel self-advocacy behavior, filling gaps. Filling gaps involved participants taking action to mitigate a perceived limitation in either their formal accommodations from the DRC or a perceived limitation in the instructional practices used in a STEM course. We also identified beliefs, such as view of disability and agency, which influenced the self-advocacy of our participants. We incorporated the emergent forms of self-advocacy into Test’s conceptual framework to propose a revised model of self-advocacy for students with ADHD/SLD in undergraduate STEM courses.

Conclusions: We developed a revised conceptual model of self-advocacy for students with ADHD/SLD in undergraduate STEM courses. This conceptual model provides a foundation for researchers who wish to study self-advocacy in undergraduate STEM courses for students with ADHD/SLD in the future. It also offers insights for STEM instructors and service providers about the self-advocacy experiences of students with ADHD/SLD in undergraduate STEM courses. We propose hypotheses for additional study based on our conceptual model of self-advocacy. Implications for research and teaching are discussed.

Mwaipopo, R. N., Lihamba, A., & Njewele, D. C. (2011). Equity and Equality in Access to Higher Education: The Experiences of Students with Disabilities in Tanzania. Research in Comparative and International Education, 6(4), 415-429. DOI: https://doi.org/10.2304/rcie.2011.6.4.415.

Despite growing calls to increase diversity in science, technology, engineering, and mathematics (STEM) fields, students with learning disabilities (SWLDs) remain underrepresented in STEM at the postsecondary level. Considering this call for increased diversity as a means to expand and strengthen STEM success, we used the High School Longitudinal Study of 2009 to explore how participation in engineering career and technical education (E-CTE) links to postsecondary educational outcomes for SWLDs. Particularly, we examined how E-CTE participation relates to postsecondary remedial course taking, enrollment in a 4-year postsecondary institution, and declaration of a STEM major. Results from school fixed-effects estimations suggest that each credit of E-CTE earned is associated with fewer remedial college courses, a higher likelihood of enrolling in a 4-year as opposed to sub-baccalaureate institution, and increased odds of declaring a STEM major. To conclude, we discuss the implications of our findings for both policymakers and practitioners.

Plasman, J. S., Oskay, F., & Gottfried, M. (2024). Transitioning to Success: The Link between E-CTE and College Preparation for Students with Learning Disabilities in the United States. In V. Snodgrass Rangel, J. Henderson, & D. Burleson (Eds.), STEM Education for All: Breaking Barriers and Building Bridges [Special Issue]. Education Sciences, 14(2), 116. DOI: https://doi.org/10.3390/educsci14020116.

In recent years, there has been a specific call to not only increase the number of engineering-trained individuals but also to address the lack of diversity in science, technology, engineering and mathematics (STEM) fields, including individuals with disabilities. In particular, students with learning disabilities (SWLDs) make up a large portion of all students and are, therefore, a crucial population on which to focus educational and career progression efforts. One potential means of promoting persistence along the STEM pipeline—engineering specifically—is through engineering career and technical education (E-CTE) coursework in high school. Using a nationally representative dataset, we explore how E-CTE participation links to college preparation and transition activities for SWLDs, including math SAT performance, dual credit course participation, college application, and FAFSA completion. Under our more rigorous school fixed-effects models, we find that E-CTE participation is associated with beneficial results across each of our outcomes. The implications are discussed.

Powder, J. (2023, February 27). How ableism holds back scientists–and science. Johns Hopkins Bloomberg School of Public Health Disability Headlines.

Until research is equitable and inclusive for people with disabilities—whether they’re scientists or trial participants—we won’t fully benefit from advances in science.

Ramiah, R., Godinho, L.,. & Wilson, C. (2022). Tertiary STEM for All: Enabling Student Success Through Teaching for Equity, Diversity and Inclusion in STEM. International Journal of Innovation in Science and Mathematics Education, 30(3), 32-45. DOI: https://doi.org/10.30722/IJISME.30.03.003.

This position paper sets out the need and rationale for systemic change in STEM learning and teaching as a means of retaining and supporting the success of underrepresented cohorts in STEM. Efforts in recruiting and retaining these students in STEM higher education degrees and subsequently, STEM careers, will continue to be undermined, if we are unable to provide them with a supportive learning environment that recognises and mitigates the inherent disparities that they have historically faced and continue to face. We propose that rather than focusing on an individual equity group and how to best support them, which may lead to perpetuation of a deficit mindset for faculty, we instead propose a project that considers the biases inherent in our current pedagogical practices and the ways in which we can build awareness of the inequities that these entrench. We intend for the outcomes of this project to support the ongoing efforts for individual equity groups as well as mitigating against future inequities by empowering faculty to create inclusive learning experiences.

Prema, D., & Dhand, R. (2019). Inclusion and accessibility in STEM education: Navigating the duty to accommodate and disability rights. Canadian Journal of Disability Studies, 8(3), 121–141. https://doi.org/10.15353/cjds.v8i3.510.

The duty to accommodate is a fundamental legal concept embedded in Canadian human rights law. The concept itself makes a contribution to advancing the goals of human rights law by attempting to extend the right to equality by protecting people from discrimination. In post-secondary institutions, pursuant to human rights legislation, the duty to accommodate requires that educators and administrators should attempt to accommodate students with disabilities short of undue hardship. Despite these legal requirements, students with disabilities are often underrepresented in STEM (science, technology, mathematics and engineering) disciplines because they face multiple barriers to accessing reasonable accommodation within the classroom and laboratory environments in Canadian universities (Sukhai and Mohler, 2017, Sukhai et al, 2014).

Reinholz, D. L., & Ridgway, S. W. (2021). Access needs: Centering students and disrupting ableist norms in STEM. CBE—Life Sciences Education, 20(3). DOI: https://doi.org/10.1187/cbe.21-01-0017.

This essay describes the concept of access needs as a tool for improving accessibility in science, technology, engineering, and mathematics (STEM) education broadly, from the classroom, to research group meetings, to professional conferences. The normalization of stating access needs and creating access check-ins is a regular practice used in disability justice activist circles, but it has not yet been normalized in STEM education spaces. Just as normalizing the use of pronouns has been an important step for supporting gender justice, we argue that normalizing access talk is an important step for advancing disability justice in STEM fields. Moreover, we argue that all individuals have access needs, regardless of whether they are disabled or nondisabled. We provide concrete suggestions and techniques that STEM educators can use today.

Reinholz, D., & Torres-Gerald, L. (2022, March 25). Sines of Disability: Disrupting Ableism in Mathematics and Beyond. Math Values [Blog]. Washington, DC: The Mathematical Association of America (MAA).

“When you think about a mathematician, what comes to mind? Do you think of a disabled person? If you’re following common stereotypes in society, almost certainly not. Although disability and mathematics have received a lot of attention in broader society, much of it has been negative attention…. Aside from…cultural references related to success in mathematics through overcoming disability, there are volumes of research that have been written about what disabled people can’t do in mathematics (Lambert & Tan, 2017), and there’s almost nothing of substance that describes disabled brilliance. That changes today, with the launch of Sines of Disability (www.sinesofdisability.com). We are a community of mathematicians, mathematics educators, and activists who are committed to disrupting ableism in mathematics and beyond.”

Reinholz, D. L., & Ridgway, S. W. (2021, Fall). Access needs: Centering students and disrupting ableist norms in STEM. CBE—Life Sciences Education, 20(3). DOI: https://doi.org/10.1187/cbe.21-01-0017.

This essay describes the concept of access needs as a tool for improving accessibility in science, technology, engineering, and mathematics (STEM) education broadly, from the classroom, to research group meetings, to professional conferences. The normalization of stating access needs and creating access check-ins is a regular practice used in disability justice activist circles, but it has not yet been normalized in STEM education spaces. Just as normalizing the use of pronouns has been an important step for supporting gender justice, we argue that normalizing access talk is an important step for advancing disability justice in STEM fields. Moreover, we argue that all individuals have access needs, regardless of whether they are disabled or nondisabled. We provide concrete suggestions and techniques that STEM educators can use today.

Riches, A. (2022, July 21). Taking pride in disability and geochemistry. OSF Preprint. DOI: https://doi.org/10.31219/osf.io/f87jk.

Exploration and personal story concerning disability inclusion in STEM with an emphasis on the field of Geochemistry. Written to celebrate and mark Disability pride month in 2022.

Robertson, A. D. (2023). Physics and ableism: One disabled physicist’s perspective. The Physics Teacher, 61, 156–157. DOI: https://doi.org/10.1119/5.0141424.

“In this article, I argue that mainstream physics epistemologies and physics teaching and learning practices reify ableism, augmenting the marginalization of disabled and chronically ill people in physics. I make this claim from my standpoint as a physicist who became disabled and chronically ill when I was 2 years old.”

Robertson, A. D. (2024, December). Disability as politics and pride: Imagining a future for physics unhooked from ableism. The Physics Teacher, 62(9), 792–793. DOI: https://doi.org/10.1119/5.0245883.

“I will never forget the second day of my qualifying exams in graduate school. I woke up around 6 a.m. to a distinctive and recognizable cramping in my abdomen and spent the next several hours in the bathroom, navigating an episode of irritable bowel syndrome (IBS). Those hours were punctuated by frantic phone calls to the graduate program assistant’s office, hoping to catch her the moment she arrived so that we could make a plan for how I would navigate my exam under the circumstances. When I finally got in touch, our best idea was that I would take my remaining exam in a separate room, proctored by her, and we would pause the clock when I needed to go throw up or manage other digestive distress.

Reflecting on this experience 15 years later through the lens of disability studies, I feel grateful that I was offered last-minute accommodations. Many disabled people aren’t offered accommodations at all; cannot risk disclosing their disability status for a variety of reasons (including racism, heterosexism, fatphobia, and other intersecting oppressions); or would have needed to have gone through an extensive (and intrusive) process, months in advance, to receive the accommodations I (a white, disabled, cisgender woman) did. At the same time that I am grateful, I also profoundly feel the lack of creativity reflected in our (including my) believing that the only way forward was for me to take my qualifying exam, at school, in the midst of a debilitating IBS episode.

In the rest of this essay, I’d like to explore what a disability studies lens offers, analytically, for understanding what happened and then imagining more humane possibilities” (p. 792).

Rudzki, E. N., & Kohl, K. D. (2023). Deficits in accessibility across field research stations for scientists with disabilities and/or chronic illness, and proposed solutions. Integrative and Comparative Biology, icad019. DOI: https://doi.org/10.1093/icb/icad019.

Equity and inclusivity in STEM research has become a larger topic of discussion in recent years, however researchers and scientists with disabilities and/or chronic illnesses are often missing from these conversations. Further, while field research is a major research component for some STEM disciplines, it is unclear what accessibility barriers or accommodations exist across the field sciences. Field research can sometimes involve harsh environments, topography, and weather, that present challenges to those with disabilities and/or chronic illnesses. A large and coinciding obstacle standing in the way of field research accessibility is the ableism present across science and academia, resulting in and from a lack of prioritization of attention and funding from universities and institutions. Biological field stations have been shown to be valuable not only as infrastructure for field-based research, but also as providing resources towards the scientific education of students and scientific outreach initiatives for the general public. As such, biological field stations are perfectly positioned to reduce barriers in research inclusion and accessibility for students and scientists with disabilities and/or chronic illnesses. The current work presents the results of a survey meant to inventory the presence or absence of accessible infrastructure across field stations, with responses spanning 6 countries and 24 USA states. Our results highlight a number of accessibility deficits, in areas such as accessible entrances, kitchens, and bathrooms. Our results suggest that (1) biological field stations have significant variability in accessibility with significant deficits especially in non-public-facing buildings used primarily by staff and researchers, and (2) field stations would benefit from an increase in federal funding opportunities to expedite their progress towards compliance with Americans with Disabilities Act (ADA) standards. We propose potential solutions to field work infrastructure spanning a range of financial costs, with emphasis on the point that efforts towards accessibility do not require an “all or nothing” approach, and that any step towards accessibility will make field stations more inclusive. Additionally, we further suggest that federal funding sources, such as the NSF and NIH, as well as university leadership, should consider broadening diversity initiatives to promote the continuation of, and increased accessibility of, university-affiliated field stations.

Rutkofske, J. E., Pavlis, T. L., & Ramirez, S. (2022, August). Applications of modern digital mapping systems to assist inclusion of persons with disabilities in geoscience education and research. Journal of Structural Geology, 161, 104655. DOI: https://doi.org/10.1016/j.jsg.2022.104655.

New and emerging technologies are changing the world as we know it, and how we choose to perform geologic fieldwork is changing as well. Recent developments in hardware and software provide unprecedented opportunities not only for conventional field studies but also for persons traditionally exempt from field-related research because of mobility issues or inability to travel. Geographic Information Systems (GIS) first allowed digital geologic mapping in the field, and these systems remain in widespread use because of ease of use and ease of data duplication for collaboration in work teams or field classes. We present a general 2D workflow based on GIS approaches that affords opportunities for physically disadvantaged individuals that includes cognitive steps driven by the data assembly process in GIS. Most notable is the digitization of linework and exploration of an area with Google Earth Pro (GEP) as steps, outside the field, that allow assessment of an area to formulate hypotheses that can be done by a physically disadvantaged person as well, or better, than those physically capable of field exploration. We then explore emerging technologies including pseudo-3D viewing using image drapes on an elevation model (aka 2.5D method) and true 3D approaches based on Structure-from-Motion photogrammetry that provide a powerful toolbox back at the office or at base camp that does not require physical abilities or direct field access. These 3D tools are potentially transformative for mobility impaired individuals that could allow them to work individually, or as part of a team, to assess field related problems. For all 3 levels of digital mapping (2D, 2.5D and 3D) we emphasize specific workflows designed to help the researcher perform digital geologic mapping with a specific focus on individuals with limited mobility. Some or all of what we suggest here, however, is of benefit to any field geologist and can be used to augment, or completely perform field studies.

Salvatore, S., White, C. & Podowitz-Thomas, S. (2024). “Not a cookie cutter situation”: How neurodivergent students experience group work in their STEM courses. International Journal of STEM Education, 11, Art. 47. DOI: https://doi.org/10.1186/s40594-024-00508-0.

Background

Although group work is increasingly used in STEM courses and may lead to improved academic outcomes, there is evidence that some implementations of group work may lead to unintended barriers for certain students’ learning. Despite the growing number of neurodivergent undergraduate students, there is limited research on neurodivergent students’ experiences with group work in STEM courses. To address this knowledge gap, the current research investigated the experiences of 22 neurodivergent undergraduate students with group work in STEM courses at a range of institution types and in a variety of STEM disciplines. Participants shared experiences with in-class and out-of-class group work assignments for lecture and laboratory courses.

Results

Through inductive thematic coding of semi-structured interview transcripts, we identified seven themes impacting participants’ experiences. Three themes were individual level: personal characteristics that participants associated with their neurodivergence; strategies for academic success (with subthemes of organization/time management, adaptive communication, and self-advocacy); and beliefs on group work’s value. Four themes were group level/classroom level: group dynamics; role in group (including leadership roles); the competitive culture within STEM; and recommendations for instructors. Through a social-relational perspective on disability, we proposed a model showcasing how group and classroom factors serve as supports or barriers to neurodivergent students’ full participation in group work, as well as to their sense of belonging. Using the seven themes we articulated, we outlined a set of practices for designing group work assignments. In addition, we propose how pairing inclusive assignment design with instructor reflection and articulating anti-ableist values can support neurodivergent student belonging by disrupting discourses of normalcy in STEM.

Conclusions

As one of the first studies exploring the impact that group work in STEM courses has on neurodivergent undergraduates, this work may inform reimaginations of group work practices to better address the needs of neurodivergent STEM students and support a more inclusive culture in STEM classrooms. In addition, our conceptual model may serve as the basis for future research regarding interactions between individual-level and group-level factors associated with neurodivergent students’ learning through group work and other active learning practices.

Sarju, J. P. (2021, June). Nothing about us without us – Towards genuine inclusion of disabled scientists and science students post pandemic. Chemistry: A European Journal, 27, 10489-10494. DOI: https://doi.org/10.1002/chem.202100268. 

Scientists and students with disabilities have been severely affected by the COVID-19 pandemic, and this must be urgently addressed to avoid further entrenching existing inequalities. The need for rapid decision-making, often by senior colleagues without lived experience of disabilities, can lead to policies which discriminate against scientists with disabilities. This article reflects on disability declaration statistics and research in critical disability studies and social science to explore the challenges experienced by disabled scientists before and during the COVID-19 pandemic and highlights recommendations and examples of good practice to adopt in order to challenge ableism in STEM communities and work-places. It is vital that disabled staff and students are fully involved in decision making. This is particularly important as we continue to respond to the challenges and opportunities associated with the ongoing COVID-19 pandemic and plan for a post-COVID-19 future. This time of great change can be used as an opportunity to listen, learn, and improve working conditions and access for scientists with disabilities, and by doing so, for everyone.

Scanlon, E. M., Guthrie, M. W., Wu, X., Syerson, E., Butler, J., Mora, B., Cassens, D., Moenter, M. D., Bott, T., Adams, T., & McPadden, D. (2025). Amplifying disabled voices in physics: Experiences from the C2C design team. The Physics Teacher, 63(4), 294-295. DOI: https://doi.org/10.1119/5.0265960.

This article is the introduction to a series promoting more just and anti-ableist physics education by centering the voices and experiences of disabled physics students. This work is part of a larger project called Courses to Careers (C2C), which creates professional development opportunities for disabled physics students and postsecondary physics instructors through meaningful partnerships. Part of the C2C project was to convene a design team of disabled physics students to include their voices in the professional development. Motivated by systemic barriers that persist in physics classrooms, this series will amplify voices of the design team to advocate for disability justice in physics instruction. This article provides an overview of the context of disability in physics, introduces key models for understanding disability, and reviews existing research on barriers to access in physics education.

Schearer, E., LaMack, C. & LaMack, H. (2025). How engineering students learn and are impacted by empathy training: A multi-year study of an empathy program focused on disability and technology. Biomedical Engineering Education. DOI: https://doi.org/10.1007/s43683-025-00179-5.

Purpose Measurable results of efforts to teach empathy to engineering students are sparse and somewhat mixed. This study’s objectives are (O1) to understand how empathy training affects students’ professional development relative to other educational experiences, (O2) to track empathy changes due to training over multiple years, and (O3) to understand how and what students learn in empathy training environments.

Methods Students in a multiple-semester empathy course completed surveys ranking the career development impact of the empathy program against other college experiences (O1), rating learning of specific empathy skills (O2), and ranking program elements’ impact on empathy skills (O3). Intervention and control groups completed the Interpersonal Reactivity Index and Jefferson Scale of Empathy at four time points (O2). Cohort students participated in post-program interviews (O1, O3).

Results O1: Empathy training impacted career development more than several typical college activities but less than courses in major. O2: Students reported gains in four taught empathy skills. Cohort students showed significant increases in the Jefferson Scale while the control group did not. There were no significant changes in Interpersonal Reactivity Index scores. O3: interactive exercises had a significant effect on students’ learning all empathy skills while interactions with people with disabilities had significant effect on learning to encounter others with genuineness. Students valued building a safe in-class community facilitating their success in experiential environments.

Conclusions This study highlights empathy skills’ importance in engineering students’ development, shows gains in empathy with training, and uncovers key factors in students’ learning experience that can be incorporated into engineering curricula.

Schneiderwind, J., & Johnson, J. M. (2020). Disability and Invisibility in STEM Education. Journal of Higher Education Theory & Practice, 20(14). 101-104. DOI: https://doi.org/10.33423/jhetp.v20i14.3854. 

Across STEM fields, the education system continues to “weed out” students from non-dominant communities. Most studies on the damaging effects of underrepresentation focus on minorities or women in STEM fields. We examine some of the research about students with disabilities and note the limited literature on this subject. University enrollment by students with disabilities has increased in the last two decades while the amount of corresponding research published has decreased. This issue should not be siloed to disability studies — it is one that must be recognized by all educators. We conclude with some practical suggestions on how to move forward.

Shifrer, D. & Mackin Freeman, D. (2021). Problematizing perceptions of STEM potential: Differences by cognitive disability status in high school and postsecondary educational outcomes. Socius: Sociological Research for a Dynamic World, 7, 1-13. DOI: https://doi.org/10.1177/2378023121998116. 

The STEM (science, technology, engineering, and mathematics) potential of youth with cognitive disabilities is often dismissed through problematic perceptions of STEM ability as natural and of youth with cognitive disabilities as unable. National data on more than 15,000 adolescents from the High School Longitudinal Study of 2009 first suggest that, among youth with disabilities, youth with medicated attention-deficit/hyperactivity disorder (ADHD) have the highest levels of STEM achievement, and youth with learning or intellectual disabilities typically have the lowest. Undergraduates with medicated ADHD or autism appear to be more likely to major in STEM than youth without cognitive disabilities, and youth with autism have the most positive STEM attitudes. Finally, results suggest that high school STEM achievement is more salient for college enrollment than STEM-positive attitudes across youth with most disability types, whereas attitudes are more salient than achievement for choosing a STEM major.

Shmulsky, S., Gobbo, K., & Bower, M. W. (2019). STEM Faculty Experience Teaching Students With Autism. Journal of STEM Teacher Education, 53(2), Art. 4. DOI: https://doi.org/10.30707/JSTE53.2Shmulsky.

College students who have an autism spectrum condition study in STEM fields at a higher rate than their neurotypical peers, and they face documented challenges in postsecondary education. Given the proportionally higher representation of autism in STEM majors, it is important to study what works best, from an educational standpoint, for this diverse group of students. The purpose of this qualitative study is to document the experience and insight of college faculty about unique learner qualities related to autism and the qualities most needed in STEM fields. In-depth interviews were conducted with 12 STEM faculty members about their experience teaching students on the spectrum, and thematic analysis was conducted to identify shared faculty perceptions. Faculty views converged on certain observable strengths, challenges, and general traits needed in their fields. The discussion summarizes findings and includes implications for teaching and postsecondary programming.

Solomon, C.M. (2024). Challenges in developing STEM sign language for inclusive education. Nature Human Behaviour, 8, 2253. https://doi.org/10.1038/s41562-024-01993-7.

Caroline Solomon is a biological oceanographer and deaf. She discusses how STEM sign lexicon development contributes to inclusive education and which challenges still need to be overcome.

Stokes, A. Feig, A. D., Atchison, C. L., & Gilley, B. (2019). Making geoscience fieldwork inclusive and accessible for students with disabilities. Geosphere, 15(6), 1809–1825. DOI: https://doi.org/10.1130/GES02006.1.

Fieldwork is a fundamental characteristic of geoscience. However, the requirement to participate in fieldwork can present significant barriers to students with disabilities engaging with geoscience as an academic discipline and subsequently progressing on to a career as a geoscience professional. A qualitative investigation into the lived experiences of 15 students with disabilities participating in a one-day field workshop during the 2014 Geological Society of America Annual Meeting provides critical insights into the aspects of fieldwork design and delivery that contribute to an accessible and inclusive field experience. Qualitative analysis of pre- and post-fieldwork focus groups and direct observations of participants reveal that multisensory engagement, consideration for pace and timing, flexibility of access and delivery, and a focus on shared tasks are essential to effective pedagogic design. Further, fieldwork can support the social processes necessary for students with disabilities to become fully integrated into learning communities, while also promoting self-advocacy by providing an opportunity to develop and practice self-advocacy skills. Our findings show that students with sensory, cognitive, and physical disabilities can achieve full participation in field activities but also highlight the need for a change in perceptions among geoscience faculty and professionals, if students with disabilities are to be motivated to progress through the geoscience academic pipeline and achieve professional employment.

Sum, C. M., Alharbi, R., Spektor, F., Bennett, C. L., Harrington, C., Spiel, K., & Williams, R. M. (2022). Dreaming Disability Justice in HCI. In CHI Conference on Human Factors in Computing Systems Extended Abstracts (CHI ’22 Extended Abstracts), April 29-May 5, 2022, New Orleans, LA, USA. ACM, New York, NY, USA. DOI: https://doi.org/10.1145/3491101.3503731.

While disability studies and social justice-oriented research is growing in prominence in HCI, these approaches tend to only bring attention to oppression under a single identity axis (e.g. race-only, gender-only, disability-only, etc.). Using a single-axis framework neglects to recognize people’s complex identities and how ableism overlaps with other forms of oppression including classism, racism, sexism, colonialism, among others. As a result, HCI and assistive technology research may not always attend to the complex lived experiences of disabled people. In this one-day workshop, we position disability justice as a framework that centers the needs and expertise of disabled people towards more equitable HCI and assistive technology research. We will discuss harmful biases in existing research and seek to distill strategies for researchers to better support disabled people in the design (and dismantling) of future technologies.

Syhara, C. M., Hain, A., & Zaghi, A. E. (2020). Promoting Neurodiversity in Engineering Through Specialized Outreach Activities for Pre-college Students. Journal of Higher Education Theory and Practice, 20(14). DOI: https://doi.org/10.33423/jhetp.v20i14.3856.

While a large body of literature suggests that students with Attention Deficit Hyperactivity Disorder (ADHD) possess significant creative and risk-taking potential, they remain highly underrepresented in engineering programs. High school students with ADHD have significantly lower GPAs and are over eight times more likely to drop out than their peers without ADHD, which makes them significantly less likely to enter college engineering programs. To support the development of a more diverse engineering pipeline, this work summarizes outreach efforts to high school and middle school students with ADHD with the intention of boosting self-esteem and increasing interest in engineering.

Syharat, C. M., Hain, A., Zaghi, A. E., Gabriel, R., & Berdanier, C. G. P. (2023). Experiences of neurodivergent students in graduate STEM programs. Frontiers in Psychology, 14, 1149068. DOI: https://doi.org/10.3389/fpsyg.2023.1149068.

Introduction Despite efforts to increase the participation of marginalized students in Science, Technology, Engineering, and Mathematics (STEM), neurodivergent students have remained underrepresented and underserved in STEM graduate programs. This qualitative study aims to increase understanding of the experiences of neurodivergent graduate students pursuing advanced degrees in STEM. In this analysis, we consider how common graduate school experiences interface with the invisibility of neurological diversity, thus contributing to a set of unique challenges experienced by neurodivergent students.

Materials and methods In this qualitative study, 10 focus group sessions were conducted to examine the experiences of 18 students who identify as neurodivergent in graduate STEM programs at a large, research-intensive (R1) university. We used thematic analysis of the transcripts from these focus groups to identify three overarching themes within the data.

Results The findings are presented through a novel model for understanding neurodivergent graduate STEM student experiences. The findings suggest that students who identify as neurodivergent feel pressure to conform to perceived neurotypical norms to avoid negative perceptions. They also may self-silence to maintain stability within the advisor-advisee relationship. The stigma associated with disability labels contributes a heavy cognitive and emotional load as students work to mask neurodiversity-related traits, navigate decisions about disclosure of their neurodivergence, and ultimately, experience significant mental health challenges and burnout. Despite these many challenges, the neurodivergent graduate students in this study perceived aspects of their neurodivergence as a strength.

Discussion The findings may have implications for current and future graduate students, for graduate advisors who may or may not be aware of their students’ neurodivergence, and for program administrators who influence policies that impact the wellbeing and productivity of neurodivergent students.

Syharat, C. M., Hain, A., Zaghi, A. E., & Deans, T. (2023). Writing experiences of neurodiverse students in graduate STEM programs. Frontiers in Education, 8. DOI: https://doi.org/10.3389/feduc.2023.1295268.

Background Despite efforts to increase the participation of marginalized students, neurodivergent students remain underrepresented in graduate STEM programs. Prior research shows that these students often experience challenges related to key aspects of writing. The objective of this qualitative study is to deepen understanding of the writing experiences, strengths, and challenges of neurodivergent students pursuing graduate degrees in STEM fields. In this analysis, we consider the factors that influence the writing-specific challenges faced by neurodivergent students in graduate STEM programs. This work also explores how neurodivergent students leverage strengths and strategies for success in graduate-level writing tasks.

Results This qualitative study draws on Social Cognitive Theory (SCT) to consider the ways cognitive, behavioral, and environmental factors impact writing experiences. We used thematic analysis of the transcripts from 13 focus groups and 1 interview to examine the writing experiences of 31 students who identify as neurodivergent in graduate STEM programs. The findings suggest that many writing challenges faced by neurodivergent graduate students are behaviors and beliefs that emerge in response to environmental factors such as the culture of STEM fields, prior experiences with writing assignments, anxiety driven by intensive feedback cycles, and perceived and experienced stigma. Study participants employed a range of collaborative and situational strategies to support and enhance their writing productivity.

Conclusion These findings may provide insight for current and future neurodivergent graduate students as they adjust to the intense writing demands of graduate degree programs and for graduate program administrators and faculty advisors as they consider new ways to support the academic success of neurodivergent graduate students.

Tedeschi, M. N., & Limeri, L. B. (2024). Models of disability as research rrameworks in biology education research. CBE—Life Sciences Education, 23(3). DOI: https://doi.org/10.1187/cbe.24-01-0026.

Advancing equity and justice in undergraduate biology education requires research to address the experiences of disabled students. Scholars working in disability studies have developed models of disability that inform Discipline-Based Education Research (DBER). To date, DBER literature has been predominantly informed by the medical and social models of disability. The medical model focuses on challenges that affect people with disabilities on an individual basis, while the social model focuses on how one’s surrounding environment contributes to the construction of disability. In this essay, we discuss past DBER research and opportunities for future research using each of these models. We will also discuss a third, less commonly used model that offers exciting opportunities to drive future research: complex embodiment. Complex embodiment positions disability as a social location that reflects a greater societal value structure. Further examining this value structure reveals how ability itself is constructed and conventionally understood to be hierarchical. Additionally, we explain epistemic injustice as it affects disabled people, and how future education research can both address and counteract this injustice. We discuss how expanding the frameworks that serve as lenses for DBER scholarship on disability will offer new research directions.

Todd, W. F., Atchison, C. L., & White, L. D. (2022). Amplifying the voices of diverse scholars to integrate culture in the Earth sciences. Journal of Geoscience Education Online Before Print. DOI: https://doi.org/10.1080/10899995.2022.2140276.

“The representation of diverse scholars from various ethnic, cultural, and ability groups in the Earth sciences is critically low exhibiting a crucial need and an opportunity to not only increase diversity but also to create agency for diverse scholars (Bowser & Cid, 2021). These needs can be effectively accomplished through the development of innovative strategies that focus on damaging policies, practices, and opinions prevalent within academia as it struggles and create equitable spaces for all to feel supported and welcome (Guillory & Wolverton, 2008; Smythe et al., 2020). VOICES of Integrating Culture in the Earth Sciences (VOICES) is a collaborative program dedicated to identifying persistent issues preventing the retention, representation, and recruitment of all racial, ethnic, and cultural groups currently underrepresented in the Earth sciences. Here we define with intention diverse scholars as those historically underrepresented, as a construct of ableism, gender, sexuality, cultural, and racial identities using asset-based language to capture the intersection of these complex identities (Gomez et al., 2021; Steele, 1997; Steele & Aronson, 1995)” (p. 1).

Walkowiak T. A. (2025). Female students with disabilities’ perceptions of science, technology, engineering, mathematics education. Doctoral dissertation, Education, Walden University.

The demand to increase enrollment in science, technology, engineering, and mathematics (STEM) education programs has intensified globally since the early 21st century. Researchers have concentrated on the gender divide with limited research on female students with disabilities (FSwDs). The purpose of this qualitative study was to explore FSwDs’ perceptions of their successes and challenges with accessibility, inclusion, and support experienced in STEM education programs, as well as their recommendations for improving policies and practices in STEM higher education. The study was grounded in social identity and social learning theories. For this basic qualitative design, semistructured interviews were conducted with nine FSwDs who were engaged in STEM activities or enrolled in STEM education courses at three local colleges and had their disabilities on file with the institution. Axial coding produced the following four themes: 1) appreciation for fostering innovation and motivation, 2) dedication to growing better communication networks, 3) commitment to promoting enrichment and understanding, and 4) supporting structural enhancements. These results could lead to positive social change by enriching the learning environment and academic settings, by streamlining the communication between the disability department and STEM teachers, by strengthening the support services, and by making structural enhancements, such as updating the building infrastructure to accommodate accessible entry at all points of entrance. By providing FSwDs access to STEM education and supporting their academic success, a critical shortage of highly qualified workers in STEM fields can be addressed.

Wang, K.D., McCool, J. & Wieman, C. (2024). Exploring the learning experiences of neurodivergent college students in STEM courses. Journal of Research in Special Educational Needs, 24, 505–518. DOI: https://doi.org/10.1111/1471-3802.12650.

Neurodivergent students exhibit an inclination towards Science, Technology, Engineering and Mathematics (STEM) fields, yet their learning experiences in STEM courses remain underexamined. Utilizing an online survey of neurodivergent (n = 60) and neurotypical (n = 83) US college students, this study identified various factors influencing their self-perceived learning experiences, including interest in the course content, instruction quality and performance outcomes. Compared to their neurotypical peers, neurodivergent students attributed negative experiences in STEM courses less frequently to performance-related factors and more often to a mismatch between their interests and the course content. Both groups also articulated a variety of strengths and challenges encountered in their STEM studies. Neurodivergent students were more likely to report having interest and passion for STEM and less likely to report having peer support and effective study skills and habits as their primary strength for studying STEM. Conversely, while neurotypical students cited difficult content as their central challenge, neurodivergent students more commonly faced challenges with focus and attention. Despite the study’s limited sample size, it revealed emerging patterns that emphasize the importance of developing inclusive teaching methods and specific support mechanisms to cater to the unique strengths and challenges of neurodivergent students in higher education.

Wessel, J., Williams, A., Culpepper, D., Daley, G., Dow-Burger, K., Forsythe, N., Lewis, S., McQuade, P.,  Redcay, E., & Robinson, E. (2024, May). Promoting Autism Inclusion and Representation in STEM: A Faculty Training. Paper presented at Paper presented at Neurodiversity at Work Research Conference, University of Maryland, College Park, Maryland.

“’Nothing about us, without us’ has been a rallying cry in the disability rights movement for decades and a critique of the exclusion of disabled individuals from the crafting of policy decisions that affect their lives (Charlton, 1998). Autism advocacy organizations like the Association for Autism and Neurodiversity (AANE) have noted a need for more autistic voices and leadership in scientific research, where individuals with disabilities have higher unemployment rates, less access to funded research opportunities than individuals without disabilities, and constitute only 3% of the STEM workforce (NCSES, 2021; 2023). Individuals who identify as autistic, a disability characterized by differences in social communication, experience unique equity gaps. There are more students with autism enrolled in higher education now than ever before (Shattuck et al., 2012; Zeedyk et al., 2016). However, autistic students complete degrees at almost half the rate of the general population (38.8%, Newman et al., 2011) and unemployment/underemployment rates have been reported as high as 85% (Shattuck et al., 2021). Taken together, such data indicate that STEM fields, core drivers of innovation and the economy, are failing to recruit and retain autistic students. In order to create more equitable opportunities for autistic undergraduate students interested in STEM careers, specific and purposeful development efforts are necessary. Our goal is to broaden the participation of autistic individuals in the STEM workforce and enhance the climate for autistic inclusion in STEM, through the Promoting Autistic Inclusion and Representation (PAIR) program. The PAIR program will (1) provide faculty training on creating autistic-inclusive research environments, and (2) develop a comprehensive research mentoring program for autistic undergraduate STEM students that includes a supervised research assistantship, developmental workshops, and group and peer mentoring.” (p. 1).

Vasquez, K. (2020, December). Excluded from the lab. Chemistry World [Website}.  

Inaccessibility continues to push disabled scientists out of science.

Zongrone, C., & McCall, C. J., & Paretti, M. C., & Shew, A., & Simmons, D. R., & McNair, L. D. (2021, January), “I’m Looking at You, You’re a Perfectly Good Person …”: Describing Non-Apparent Disability in Engineering. Paper presented at 2021 CoNECD, Virtual – 1pm to 5pm Eastern Time Each Day. https://peer.asee.org/36059. 

In recent years, studies in engineering education have begun to intentionally integrate disability into discussions of diversity, inclusion, and equity. To broaden and advocate for the participation of this group in engineering, researchers have identified a variety of factors that have kept people with disabilities at the margins of the field. Such factors include the underrepresentation of disabled individuals within research and industry (Spingola, 2018); systemic and personal barriers (Pearson Weatherton et al., 2017; Phillips &amp; Pearson, 2018), and sociocultural expectations within and beyond engineering education-related contexts (Groen-McCall et al., 2018a). These findings provide a foundational understanding of the external and environmental influences that can shape how students with disabilities experience higher education, develop a sense of belonging, and ultimately form professional identities as engineers (Reference removed for review; Kimball et al., 2015).

Zurn, P., Stramondo, J., Reynolds, J. M., & Bassett, D. S. (2022, December). Expanding Diversity, Equity, and Inclusion to Disability: Opportunities for Biological Psychiatry. Biological Psychiatry: CNNI, 7(12),1280-1288. DOI: https://doi.org/10.1016/j.bpsc.2022.08.008.

Given its subject matter, biological psychiatry is uniquely poised to lead STEM (science, technology, engineering, and mathematics) DEI (diversity, equity, and inclusion) initiatives related to disability. Drawing on literatures in science, philosophy, psychiatry, and disability studies, we outline how that leadership might be undertaken. We first review existing opportunities for the advancement of DEI in biological psychiatry around axes of gender and race. We then explore the expansion of biological psychiatry’s DEI efforts to disability, especially along the lines of representation and access, community accountability, first-person testimony, and revised theoretical frameworks for pathology. We close with concrete recommendations for scholarship and practice going forward. By tackling head-on the challenge of disability inclusion, biological psychiatry has the opportunity to be a force of transformation in the biological sciences and beyond.

On Being a Vicarious Witness: Aktion T4 and Contesting the Erasure of Disability History – Resource Guide

Poster for "On Being A Vicarous Witness" event
Poster for “On Being A Vicarious Witness” event (PDF format)

Content Warning: Due to the nature of this content and subject matter, discretion is strongly advised.

On October 18, 2021, three queer Jewish disabled writers and artists discussed their work on Aktion T4, a prime crucible of disability history. How do they avoid a sentimental or aesthetic depiction? In their work, and as they work, how do they avoid re-inscribing trauma? Because Aktion T4 has no survivors, how do writers and artists become “vicarious witnesses,” which memory studies scholar Susanne C. Knittel describes as not “an act of speaking for and thus appropriating the memory and story of someone else but rather an attempt to bridge the silence through narrative means”?

Updated 11-23-2021

Edited Transcript – “On Being a Vicarious Witness: Aktion T4 and Contesting the Erasure of Disability History”

Content Warning: Due to the nature of this content and subject matter, discretion is strongly advised.

>>DIANE WIENER: Good afternoon, everyone. We at the Office of Interdisciplinary Programs and Outreach at the Burton Blatt Institute are honored to welcome you to our panel, “On Being a Vicarious Witness: Aktion T4 and Contesting the Erasure of Disability History,” featuring our  distinguished panelists, Kenny Fries, Perel, and Quintan Ana Wikswo, and moderated by the incomparable Julia Watts Belser.

To begin, we acknowledge with respect the Onondaga Nation, firekeepers of the Haudenosaunee, the indigenous people on whose ancestral lands Syracuse University now stands.

I’m Diane Wiener, a Research Professor, and the Associate Director of the Office of Interdisciplinary Programs and Outreach at the Burton Blatt Institute, and the lead editor of Wordgathering: A Journal  of Disability Poetry and Literature housed at Syracuse University.

I am a white Ashkenazi Jew. I am gender nonconforming. I have short salt and pepper hair and green-framed glasses, which I will adjust on my face as I say that. I’m wearing a gray-striped suit jacket over a teal, button-down, collared shirt, and am seated in my dining room in front of a maroon wall with various, brightly colored artwork.

This event is free and open to the public, and includes live captioning, American Sign Language  interpretation, and image descriptions. I’ll say more about Zoom accessibility in a few moments.

Thanks to our American Sign Language interpreters, Katie Lambe and Kip Opperman, and thanks to Terre Slater of Empire Interpreting Service.

Thanks to our esteemed live captioner, Doreen Radin from Caption Advantage. Special thanks go to Rachael Zubal-Ruggieri, from the Office of Interdisciplinary Programs and Outreach, and to Kyle Jaymes Davis and Joel Whitney, from our Syracuse University College of Law’s IT Services.

This event was made possible with generous support from the Collaboration for Unprecedented Success and Excellence (CUSE) Grant Program, with additional support from Atrocity Studies and the Practices of Social Justice; the College of Visual and Performing Arts; the Department of History; the Department of Religion; Department of Writing Studies, Rhetoric, and Composition; Disability Studies; Hendricks Chapel; Jewish Studies; LGBTQ Studies; the LGBTQ Resource Center; and Syracuse Hillel.

A book discount for event participants is available via the Syracuse University Bookstore. A link will be provided in the chat. I want to thank our colleague Karen Spencer of the SU Bookstore, for her spirited collaboration, assistance, and engagement, as always.

Some Zoom accessibility specifics follow:

The chat function that allows folx to write to and chat with everyone here will be “disabled”, not turned on, during the panel. However, messages can be sent to and read by folx designated as Panelists – in our case, that means the event organizers and the leaders of our team here.

If you have any concerns with accessibility, any concerns at all, or anything else that you’re concerned about, please send a message using the chat function, and a team member will see it, who are the leads of this event – of this phenomenon. Quoting Quintan, who pointed that out earlier. It is a phenomenon. A team leader or member will get back to you if you have any concerns.

If you have a concern but are unable to access the chat function, you can use the “raise hand” feature, another wonderful term that’s complex because not everybody has hands to raise. But that’s what it’s called, that’s Zoom, not me. But we will not turn on mics and videos during the panel. We’ll find a way to communicate you and do our very best to address any concerns that you may have.

As noted, American Sign Language interpretation and live captioning will be provided, on-screen, throughout the gathering. You can “pin” interpreters or others, using Zoom, if you wish, by selecting this option in the Interpreter’s or others’ Zoom frames, on-screen.

Please note that we will be using the gallery view throughout this conversation. The panelists, moderator, and the ASL interpreter who is actively interpreting will be on screen at all times.

A transcript of the live captioning will also be available, throughout the event. You can enable subtitles by clicking on the Live Transcript button, depending on your Zoom interface, it is usually at the bottom of the screen, and select “Show Subtitles” from the resulting drop-down menu.

If you would prefer to view the full transcript in a side panel next to the meeting window, you can select “View Full Transcript” from that same menu. Additionally, participants can view captions with an adjustable font at the StreamText link provided in our chat. Should any visual content be shared, it will be accompanied by an image description. I described myself, for example, when I introduced myself to you.

During the discussion component of our event, if you want to ask a question or make a comment, we would prefer, if possible, that you please use the Q&A feature, which includes the option to remain anonymous.

You can also use the chat function, which we will turn on or “enable”, to make useful to us, to be able to interact with all participants during this part of the event in our virtual audience today. I should say our “digital audience”, you are actually here, just not in person.

A third option is to use the “raise hand” feature, and your mic and video will be momentarily turned on, so you can ask your question or make your comment if none of those other options work for you.

We will do our very best to respect and respond with the timing of this to address as many questions as we can given the time allotted. Julia will be our discussion moderator and will read aloud a variety of these questions and comments shared via the Q&A.

If you raise questions or comments in the chat, we will do our best to keep track of and share some of these questions and comments, as well. Questions and comments that are shared aloud will, in turn, be interpreted, and also will be available via the live captioning, meaning that they will be interpreted in American Sign Language and included in the live captioning.

Once the chat function has been made available to all participants, please consider using it only when truly necessary. For some folx, the usage of the chat has the possibility of changing the accessibility features of Zoom because it could block captioning and that can sometimes occur. So the chat  function is not easily minimized on screen for everyone. So please, consider that when you’re using the chat.

So I know that people want to say “thank you, that was fascinating, we appreciate you,” and those are all beautiful things to share or any other comments, but I would prefer as our host, if you waited until the end to do that so that it is not as likely to interrupt the accessibility features of the event.

This event is being recorded. An accessible video will be made available publicly, once it’s available. Which should be relatively soon.

In order to provide some important context for our conversation, I was thinking with seriousness and open heartedness, how do you do a content warning for something like this? I think the word Nazi is an adequate content warning.

The critique that we’re going to give today is layered and complex but certainly the content is very difficult, and nuanced but also has the potential to be liberatory without idealization.

I ad libbed that so I hope it worked.

So, I will now share some information about AktionT4, and I know I’m pronouncing not fluently because I’m not a fluent German speaker. I want to thank Kenny Fries for providing some content for me to share with you, some historical background about this. Please forgive me again for my non-fluent pronunciation of the German.

Aktion T4 was the Nazi program that mass murdered 70,000 people with disabilities, those deemed “unworthy of life.” The program officially began with a memo written by Adolf Hitler, dated September 1, 1939. But research shows the memo was actually written on October 1, 1939, and backdated to September 1st so it coincided with the start of the war.

Six killing sites – Brandenburg, An der Havel, Bernburg, Grafeneck, Hadamar, Pirna-Sonnenstein, and Hartheim were set up to kill disabled people in gas chambers. In 1941, after the official end of Aktion T4, an additional 230,000 people with disabilities were killed, not only in gas chambers but also by other means such as starvation, medication overdose, and neglect.

T4 stood for Tiergartenstrasse 4, the Berlin address of the villa, which served as  bureaucratic headquarters. The villa had been appropriated from the Jewish Liebermann family. After the war, what remained of the villa was destroyed. In its place the Philharmonie, home to the Berlin Philharmonic, was built. In 2014, the Memorial to the victims of national socialist “Euthanasia” killings, quote unquote, was opened on the site in front of the Philharmonie.

It is now my privilege and pleasure, having shared that historical content, it is now my distinct pleasure and privilege to introduce our esteemed moderator, Julia Watts Belser, who will then  introduce our wonderful panelists. And I thank you all so much for being here.

As noted after the panel, we’ll have our discussion component and following the discussion, I will share some comments from university professor Steve Kuusisto, who is the director of the Office of Interdisciplinary Programs and Outreach and a university professor here at Syracuse University, as well as a public intellectual. Many of you know Steve.

Julia Watts Belser is associate professor of Jewish Studies and core faculty in Disability Studies at Georgetown University. Her research centers on gender, sexuality, and disability in rabbinic literature, as well as queer feminist Jewish ethics. A rabbi and a longtime advocate for disability and gender justice, Belser writes queer feminist Jewish theology and brings disability arts and culture into conversation with Jewish tradition.

Please join me in warmly welcoming our distinguished guests, via Zoom, to Syracuse University.

And, I’m wishing you all a meaningful national Disability Employment Awareness month, and LGBTQ+ History month, today and always. Thank you.

>> JULIA WATTS BELSER: Thank you, Diane, thank you for all the work that you have done to make this extraordinary gathering possible. And for all the ways you work to build a more just world.

My name is Julia Watts Belser. I’m a white Jewish woman with curly brown hair wearing a shimmery grey-pink shirt and a crocheted handmade kippah, like a beret. I’m honored to moderate our event today and to introduce our speakers: Kenny Fries, Perel, and Quintan Ana Wikswo.

We have an extraordinary opportunity today to learn with three queer disabled Jewish artists and writers who are wrestling with the violence of T4, the state-sanctioned killing of Disabled people in Nazi Germany. The name itself “T4” is an abbreviation of the Berlin address Tiergartenstrasse 4 where, in 1939, the program was developed: the plan to systematically gather and kill disabled Germans, people with intellectual disabilities, physical disabilities, those deemed mad, chronically ill, or otherwise unfit – those who were deemed “life unworthy of life.” It is just so hard to even say those words. Many of the strategies that were used to exterminate Jews at Auschwitz and the other killing centers during the Holocaust, were first developed and worked out in Aktion T4.

There is a custom in Jewish culture to say of the dead, those loved ones who are no longer with us, Zichrono livracham. May their memories be for a blessing. It is difficult to hold those words alongside the intensity of T4’s violence, alongside the intensity of erasure and eugenics, alongside the refusals both historical and very much alive in our present moment to create and sustain the conditions where disabled people can live and thrive. It is difficult to hold those words, that wish: May their memories be for a blessing.

It is difficult to know what they mean, what they should mean, what they could mean. Kenny, Perel,  Quintan, I have been moved deeply by your work which feels like a profound invitation to grapple with this question: How do we witness, acknowledge, mourn, grieve, testify, and create in ways that do honor to those who were murdered? In ways that name not only the horror of the killings themselves but the silence that has so long surrounded them?

How do we witness in ways that allow ourselves to be changed? We’ll hear now from our first speaker, Kenny Fries.

A writer and teacher who has done so much to center disability experience and whose work affirms the urgency of attending to disabled voices. Kenny is a celebrated author of many award-winning works including In the Province of the Gods for which he received a Creative Capital Literature Award and The History of My Shoes and the Evolution of Darwin’s Theory, which received the Outstanding Book Award from the Gustavus Myers Center for the Study of Bigotry and Human Rights.

Kenny will speak today about his forthcoming book, Stumbling over History: Disability and the Holocaust, which documents his visits to the six Aktion T4 killing sites. His research and writing for the book has been supported by a Rockefeller Foundation Bellagio Center Arts and Literary Arts Fellowship, a Fulbright fellowship and several other prestigious grants, and excerpts from the book have appeared in The New York Times.

Kenny, thank you so much for envisioning this gathering for bringing us here today, and for thinking with us about your work.

>> KENNY FRIES: Hello. I’m here in Berlin where it is now 9:20 at night. So I am a white man with short, dark hair, wearing round reading glasses, which don’t help me see very much any more. And wearing a dark purple collared shirt and behind me is a very messy desk, very messy book shelf filled with books and a white back wall behind it. And I wanted to thank Diane, Steve and Rachael for all the work they did in helping to put this all together. It is something that I envisioned, and it is nice that it is actually happening and thanks to Katie and Kip, the interpreters, and our captioner, Doreen, and Kyle for all of his tech help.

So first I want to dedicate this evening to Marilyn Golden, an important disability activist who was instrumental in the passage and implementation of the Americans with Disabilities Act, and long-time policy analyst at the Disability Rights Education and Defense Fund, who passed away on September  21.

Marilyn was my first disability mentor to whom I dedicated Staring Back: The Disability Experience from the Inside Out. Without knowing Marilyn none of the work I’ve done for the past decades would have happened.

As today’s event is about contesting the erasure of disability history, I wanted to bring Marilyn along with us tonight to emphasize the importance of our knowing our disability histories. I want to frame my talk tonight by saying that Aktion T4, like many aspects of disability histories, remains unknown, even in Germany.

In 2019, when I wrote a piece around the 80th “anniversary” of T4, an editor at a very well known publication responded to my query by saying he wasn’t interested in a piece commemorating  something that nobody knows about.

My journey toward my work about Aktion T4 started in 2013, when I arrived in Berlin to research the lives of disabled people who grew up in what was East Germany. But very soon I realized I could not understand disability in a German context unless I went back further to the Nazi era, and even earlier.

In 2013, Quintan Ana Wikswo, who I had met through Creative Capital, the foundation that has supported our work, came to Berlin for their show at the Jewish Museum. One night, I gathered a group of disability activists, writers, scholars, and artists in my apartment so Quintan could share her work on disability, which was not featured at the museum. That night, I asked my German colleagues what they thought of Americans coming to Germany to Work on this German disability history. The consensus response was that what we were working on were not German issues but human issues. At the end of the night, Quintan privately warned me that working on T4 would cause depression and nightmares. What transpired that night can found online at Creative Capital when Quintan and I interviewed each other about that evening.

After meeting Andreas Hechler, the great grandson of Emilie Rau, who was killed at Hadamar, and whose grandmother was instrumental in bringing to public attention what happened at Hadamar, I  decided to visit the six T4 killing sites, some of which are still psychiatric institutions today.

These visits became the core narrative of Stumbling Over History. After my last visit, a colleague asked me how I felt. I couldn’t immediately answer her question. Then, I read Susanne Knittel’s The Historical Uncanny, in which she writes about Grafeneck, one of the T4 killing sites, and its relationship to Risiera di San Sabba, an internment camp in Trieste, Italy.

It was in Knittel’s book that I first encountered the idea of being a “vicarious witness.” This is a very short excerpt from the book.

“Unlike the Holocaust, there are no T4 survivors. We know about T4 and its aftermath mainly through medical records and from the perpetrators. Aktion T4 does not have its Elie Wiesel or Primo Levi.”

That is the main reason I write about what happened to disabled people during the Third Reich. I want to be what Susanne Knittel and other scholars call a “vicarious witness.” Knittel describes this not as “an act of speaking for and thus appropriating the memory and story of someone else, but rather an attempt to bridge the silence through narrative means.” This is my way of bridging the silence, of keeping alive something that is too often forgotten.

Also important was learning from Knittel about multi directional memory: in order to understand what happened it is sometimes necessary to go back to events that took place before, as well as ahead to future events. I do this in Stumbling Over History by going back to the 1923 Melzer survey of the parents of his disabled patients. 73% said they would be okay if their disabled children were killed if they didn’t know about it. And earlier eugenics prevalent in the US, Canada and the U.K.

And I also go forward to discussing the similarities and difference in societal reaction and protest/lack of protest to T4 and the early years of HIV/AIDS. Yehuda Bauer, professor and honorary chairman of the International Holocaust Remembrance Alliance makes a distinction between historical denial, and historical distortion. Though both are obviously problematic, Bauer said it is more difficult to deal with the distortion than denial. Quote “distortion of the past rests on a combination of truth and invention.”

I encountered this difficulty when writing about the so-called test killing at Brandenburg which was the first T4 killing site. In my book, I write:  “I’m not surprise surprised that some of the perpetrator’s testimony is contradictory.”

In his diary, Dr. Ebril, the medical director at Brandenburg mentions January 18, 1940 as the date of the test killing. However, Dr. Shuman who we know to have been present at the event was on that day at Grafeneck, where he would oversee mass killings. The first of which occurred on January 18.

Another T4 employee said the murder of patients in Grafeneck started about 14 days after the test killing in Brandenburg. It seems Ebil mixed up the dates of the two killings. After he was arrested in 1959, Werner Hyde, a psychiatrist and the medical director of the T4 program, placed the test killing at the beginning of January 1940. He confessed to being only an observer. The German Meteorological Office records the first major snowfall of the 1939-40 winter in Brandenburg on new year’s eve, 1939. December had been relatively dry. Victor Brock, in his testimony, was very clear about the snow on the ground at Brandenburg for the test killing. By deduction, it seemed that the first Brandenburg mass murder took place during the first days of January 1940. You see how — one has to conjure and deduce these things, because the historical record isn’t clear.

So along the way on my journey, Perel, who I met Berlin, invited me to be their special guest for Life (Un)Worthy of Life, first in Berlin, then in Hamburg. This past year, we collaborated on a virtual version for Chicago because we could not do the show there live because of the pandemic. You can watch the 35-minute video on my YouTube channel. Using excerpts from Stumbling Over History, as well as photographs I took at the T4 sites, combined with historical photographs, I created What Happened Here in the Summer of 1940? a video series about my T4 visits (which also can be viewed on my YouTube channel). As I researched, I was always aware of Quintan’s warning. But my work didn’t cause depression or nightmares until the coronavirus pandemic, when it became clear eugenics is not something of the past but alive and well and killing people today through triage  protocols, and the ways social distancing and other pandemic measures such as masks, are rightly promulgated but without much thought on the disparate effects on disabled people.

Besides the pandemic, the 2016 killing of 19 disabled people in Sagimahara, Japan and the 2021 killing of four disabled people at an institution in Potsdam, outside of Berlin, both killers were formerly working at or presently working at the institution at the time of the killings, is evidence enough of how eugenics remains a prevalent issue. I use these experiences in my accessible audiotext, “Disability Can Save Your Life” the only thing I have been really able to write during the pandemic.

I learned from being on stage together with Perel that no longer being a lone disabled person  contesting the erasure of disability history can be powerful. On stage, Perel and I were two. Today,  along with Quintan and Julia, we are 4, made even more powerful by all 4 of us identifying as Jewish, queer, and disabled.

Today’s event is another step in the process of contesting the erasure of disability histories. And behind us and with us, are those who were killed. At one of the six killing sites, there are few remnants that remain. But the memorial exhibit is haunting. And I’ll end with a brief passage again from my book.

The basement is rough, the floors are brick. If looked at closely, there is a notch in the wall where once the gas chamber door had been hinged. In one room are square black and white photos of some who were killed here. The photos are mounted on top of metal poles. All at an equal height, the faces, facing inward, are placed in two rows facing each other. From the end of the room, it is as if the parade of the patients  to the gas chamber is ghostly, though at a stand-still, reenacted. Standing between the rows in the multi-arched room, it is as if one has entered a silent, yet never ending conversation between those caught between lives both led and lost.

Thank you.

>> JULIA WATTS BELSER: Thank you. Thank you for the work that you have been doing. The painstaking work that you have been doing to document and reconstruct this history, and also for the way that you acknowledge how haunting it is. You’ve already in some ways, set the stage for our next speaker.

But let me take a moment to introduce Perel, an Interdisciplinary artist whose work centers on disability and queerness in relation to care, consent, and sexuality as well as personal and historic  trauma.

Perel is a Ford and Mellon Foundation Disability Futures Fellow and they are the creator of a powerful talk show Life (Un)Worthy of Life – which takes up and reconfigures the terminology the Nazi regime used to designate disabled people as fit only for death. They’ve performed the show at the No Limits Festival in Berlin in Hamburg and in a virtual version for Chicago’s Bodies of Work Festival, with Kenny Fries. The show works to  create an intimate and evocative space to discuss and examine  the legacies of oppression. Thank you, Perel.

>>PEREL: Thank you so much, Julia, and thank you so much, Kenny that was so beautiful, and I wanted to say that I — what I appreciate about knowing Kenny and talking with Kenny is that, he will always go to the details of things in order to point at the larger implications in this exquisite way that is very unique to him. And I really appreciate that.

My relationship to Aktion T4 has been taking shape in the past few years, physically. And I say “physically” because I can tangibly say that 2018 was the year that I began to visit both former killing sites and also concentration camps. But psychically, or psychologically, or spiritually, I can say that I have been living in its legacy since before I was conscious of it. It is a legacy of absence, and of erasure. I have found myself occupying that space, and learning to find ways to co-exist with its silence.

In 2019, I created Life (Un Worthy of Life: A Queer Dis-Crip Talk Show as way to bring attention to this history. It premiered in Berlin and has since only been performed in Germany.

In the show, I talk about the anti-Semitism I grew up with in my town, and also the inundation of Holocaust narratives that I read privately. Even though I am clear about the violence and oppression I learned to live with as a Jew, I also acknowledge the complete lack of historic knowledge I received about disability.

In the 2020 iteration of the show, I use an empty chair as symbol for this absence, and as I tell my own stories, I cyclically pause at the chair as a way to bring awareness to the stories that are not there. In the following video clip, I walk from the front of the stage to the back of the stage to stand behind an empty wooden chair.

I am wearing a leather shirt, my short hair is bleached. I have the microphone in one hand, and my silver cane in the other. As I stand behind the chair, the lights go down until there is only one spotlight over it.

You so can play the video clip now.

>>Whenever I have gone to memorials or sites, I really try to imagine any kind of story that I could just making them up in my mind really of people with full lives who knew what was happening to them and had no choice. And I wondered about ways that they might have tried to resist however small or large. I wondered about ways that they might have tried to comfort themselves when they had to face their deaths from a bunch of people who pretended to be caring for them.

>>PEREL: So I guess the clip ended there, but after the spotlight comes down, there is a full few minutes of pause that is just in silence on the chair. And I was thinking about the symbolism again in preparation for this panel. And how I see the chair working in a non-linear way in relationship to my body. The chair not only symbolizes the absence of disabled survivors or voices from that time, but it is also an acknowledgment of the dead, and an invitation for the dead to join me there. So my presence is a continuation of their absence. In this sense, I am myself no longer a symbol for disabled people to the audience, but an embodiment of a history.

Throughout the performance, I also ask the audience questions about their own relationship to this history. That’s the nature of it being a talk show. The following video clip is from the same show, I am standing at the front of the stage having a dialogue with an audience member, so you will be hearing  a voice off screen from someone there answering my question. The stage is lit with lavender and blue tones, giving a late night cabaret feel. Please play that clip.

>>Do you learn anything about what happens what happened to disabled people specifically, or —
>> No.
>> Just about —
>> I remember learning about, called Limbs Born this initiative where they were trying to breed the perfect mix of Aryans or whatever. And yes, there was definitely like alongside that it was mentioned that there were other forms of, like other forms of life that were not deemed fit. And that if babies were born looking a certain way, for example that they were euthanized.
>> Okay.
>> But yeah, I seem to remember learning that in school.
>> Anyone else want to say what they have learned? Go ahead.
>> Very close to where I grew up was actually in, I think the English word is asylum, and like a living or like a hospital, I don’t know, for disabled people and people with mental illnesses. And of course, that’s during the second word war, that’s the place where these people were euthanized. Like, beforehand, they just lived there or were treated and then just turned  into like a mini concentration camp. And in school, we learned about that because it is very  close, and it is within the area.
>> Where was it?
>> It is in the middle of Germany, it is near Frankfurt.
>> And what was the —
>> The place is called Hadamar. And I remember that when I learned that in school and we had like, talks with people who worked for this place, it is now a museum. And like people worked with that and taught us about it. I went home and asked my grandma about it, like, did you remember this happening? And she said like, oh, well, you know, there was always smoke coming out of the chimney. We were wondering about that. Like — yeah. That was peculiar back then. But like the typical thing, we didn’t know anything. And I think I was also like 13 or 14 or something like that. Didn’t really understand that she was pretending to not know. I just believed her when she said they didn’t know anything. But much later, I understood what this was actually like.

>>PEREL: It is very hard to follow up that dialogue with something more to say as it is a very powerful, real life example of the legacy of silence and its lasting devastating effects, the alienation that is shared among generations, and even among those born from accessories to the killings.

In closing, I would like to share that Kenny has played an important role in my work here. He was a guest interviewee in all of the Life (Un) Worthy shows and together we created an on-line discussion about eugenics, Aktion T4, and the pandemic with a group of disabled artists, scholars, and activists that premiered in June this year. We will share the link to the video. Distinguish we shared the link to earlier. I am really grateful for our intergenerational bond, and am aware of its rarity given the historical conditions of our kind. So thank you very much.

>> JULIA WATTS BELSER: Perel, thank you. You speak so powerfully to the significance of creating a space and holding a space to mark that empty chair. It acknowledges not just the history of violence and erasure but also the ongoing effects of silence. The way that alienation is carried and passed through generations, and you model powerfully some of the ways that silence and alienation can be disrupted, the way it we can be present, here and now, to legacies of and the realities of loss.

With all of that in mind, I’ll invite us to third now to our third speaker, Quintan Ana Wikswo, an author and visual artist whose critically-acclaimed work integrates literature with photography and other media.

Quintan’s books include The Hope of Floating Has Carried Us This Far, and A Long Curving Scar Where the Heart Should Be. Quintain is also a Creative Capital Awardee. And they received a grant from the National Endowment for the Arts to research, document, and create work about the way the German and US doctors colluded together to develop and implement the Nazi eugenics program at the Center for the Epileptic and Feebleminded in Virginia and in California, New York, and the Southern United States.

Quintan, thank you for being here today.

Quintan, you’re muted.

>>QUINTAN ANA WIKSWO: Am I here? Okay. I’m Quintan Ana Wikswo. Our effort here is holy. At age 12 and Europe in the United States. Today I’ll I will present those to you alongside my speaking voice, photographs of eugenics sites and video performances from my exhibitions, at the Berlin Jewish museum and elsewhere.

I’m speaking to with you with long silver hair and pale skin wearing black, in front of stacks of books.

The erasure of disability history. Are we erasing, or are we keeping secrets?

In Latin, SECRETUM and SECERNERE – to set apart through a sieve. Secrecy – a tool used to set apart, to sift and separate and divide, isolating – or someone – out of the way. There are survivors and victims of Aktion t4.

There are perpetrators and proponents of Aktion T4. Who is secret here? Are they? Are we? Who is we? Who is a secret? Aktion T4 is still happening. It preceded the Nazis, and it gains speed today.

We have a slice in time, like a glance through a window, where the murders of disabled people were documented – the Third Reich. But these atrocities against disabled people still happen. The window moves. It is 1866. It is 1776. It is 2006. It is the year 2021. Who is separated by this window of witness and victim, perpetrator and survivor? Who is whom? Are they? Are we? Who is we? What is our witnessed secret? Kyle, could you play it.

>>KYLE JAYMES DAVIS: Just so everybody knows, I will be popping in occasionally when there is text on the screen to read it out loud. I’m not going to do a description of myself because my video is not on. And apologies for mispronouncing anything.

So this first slide that is up right now, says autobiographical project in photography, essay, film and performance regarding queer women affected by the Aktion T4 and lengthy careers of doctor, teachers and their students at the hospital from 1920 to today.

>>QUINTAN ANA WIKSWO: Invoke in your mind’s eye a gathering of people in a city square – laughing, talking, working, watching, enjoying a rich and full life. You look away for a moment. When you look back, everything seems the same.

A voice announces: WE CELEBRATE HEALTH AND WELLBEING. You feel a sense of security. After all the turmoil and anxiety that haunts you, you can relax. A small child is next to you, and whispers, they searched for us and they killed us. You reply, who? The child responds, I’m not supposed to say. WHY? they said we were unworthy of life. WHEN – [whisper] in that moment, when you looked away, they took us. HOW? it’s a secret. I’m not supposed to tell anyone about our lives. Nobody has even noticed that we’re gone. Why? Who? How? When? The child disappears. Leaves behind a scent, an echo, faint reminders of its presence

>>KYLE JAYMES DAVIS: Text on the screen says: On the murder of the infant Gerhard Herbert Kretschmar in the Aktion T4 Bavarian section.

>>QUINTAN ANA WIKSWO: Today we are here with that child, and all the human beings for whom it speaks. We are sitting in our chairs and incumbent on us is to listen to the questions and the answers, and examine our role today. Let’s look for the secret. Let’s tell the secrets. Our own. In 1680, My ancestors arrive from Scotland into the British colonies of America in Charleston, South Carolina. A large well-connected clan who establish plantations, purchase human beings to imprison for slave labor, and dwell in large and beautiful mansions and – later, when our blood is mixed – also in the rough slave quarter huts of prisoners.

Year after year, men from my family rape these prisoners. Children are born, who are less than human. It is 1973. I am one of these children. All witnesses claim vicariousness. The secrecy brings my ancestors money. Shame. Land. Erotic pleasure. Profit. The witnesses were vicarious. For four centuries and counting. In 1910, great-grandfather Lafayette is born mixed race with one leg, syphilis and epilepsy.

Kyle.

>>KYLE JAYMES DAVIS: This text reads, four strategies for filing. An autobiographical project on the taxonomy of Jewish body specimens in performance, poems and photographs from my work in the archives of the Vienna T4 body parts archive (secret, concealed, existence).

>>QUINTAN ANA WIKSWO: Lafayette is born mixed race with one leg, syphilis and epilepsy. In 1962, he is taken to the Virginia Center for the Epileptic and Feebleminded, selected for a treatment he is not intended to survive. He dies with vicarious witnesses holding his hand, signing the death card, shaking the hand of the doctors. He is in a mass grave at the institution. In 1980, my family story is whispered to me as a child. I am committed to secrecy. Yet as I grow up as a human rights worker in the South, as I learn that I have extensive physical and neurological disabilities, I have autism, I learn this process of sorting out disabled and queer and mixed race people is called “a mountain sweep.”

Selecting anyone less than human, collecting them, and taking them someplace secret from which they will never return. My family secret is the secret of every family, perpetrator and prey that I have ever met.

In 1986, there is talk about removing my uterus, ovaries, and any diseased parts of me that might one day bear children. I am sixteen. I have never had consensual sex, and they tell me they plan to remove my organs so that I cannot pass on my genes. Although, they say, it is unlikely that I am healthy enough or desirable enough to have children anyway.

I hitchhike to Memphis where I take a train to New Orleans and disappear. The memory of their threat is now a secret. A woman who cannot have children? A useless eater. In 1998, I visit my Swiss boyfriend directing the particle collider of CERN. He shows me the tunnels, and in them we have sex, the condom breaks. He seems undisturbed. He invites me to a lunch later, with friends.

The lunch is an appointment with a Swiss-German gynecologist. She explains to me in German that it is impossible for someone of his career promise to have the burden of a disabled child.

Kyle.

>KYLE JAYMES DAVIS: Six nights in Ignaz Günther Haus. Autobiographical commission regarding fetishization, eroticization, and othering of the Jewish disabled body in historical and contemporary German society.

>>QUINTAN ANA WIKSWO: He explains to me in Italian that fathering a half Jewish child would forfeit his own inheritance even though he thinks that I’m sexy. Nobody knows whether or not I am pregnant, but I am ordered to have an abortion. The diploma on the gynecologist’s wall bears her name – she graduated from the Charité Hospital in Berlin.

I begin my official work on Aktion T4 in 2000 after conducting an extensive interview with one of the surviving Mengele Twins. I learn that my family story intersects with her family story and secrets and fear and shame and rebellion.

In 2003, I find the name of the doctor who had issued the order for the murder of my great-grandfather. I learn he studied in Germany with Aktion T4 doctors before there was an T4. On an ancestry site, I tracked down the doctor’s descendants. One is a psychologist in San Francisco, and I call and he is taking new patients and for two years I pay him for treatment surrounding the still-secret abuses and atrocities I have survived. He is a sympathetic man. He learns my family history and realizes his father murdered my great-grandfather. He guards his secret. He guards his father’s secret. I never tell him I know, and that I will eventually tell everyone that I hunted him down to witness him – not vicariously.

In 2004, At one desperate hour of suffering, he forcibly institutionalizes me. The panel of doctors discusses at length the value of a chemical lobotomy. I have filed a medical protective order. I am not lobotomized. In 2005 I receive a letter from the Harvard Brain Bank, telling me that the psychiatrists in San Francisco had identified my brain as aberrant, and submitted it to Harvard for posthumous study. This is more or less a form letter, Kyle.

>>KYLE JAYMES DAVIS: The slide reads Carrie Buried Beneath Catala Leaves, an autobiographical project in photographs and poems documenting my encounters and arrests while investigating the Aktion T4.

>>QUINTAN ANA WIKSWO: …with a space for my signature that would permit the removal of my brain post-mortem, and its cataloging. I do not sign my name. In 2006, I begin research on my therapist’s family to see where in Germany they had studied. It was at a major institution in Berlin – Charité Hospital. I research the names of the instructors.

They train students in the Neurology, Psychiatry, and Gynecology. They lecture and recruit widely for the Nazi party and for medicine, especially in the United States. When the Virginia doctor travelled home from Germany, he sits in his their and examined my great grandfather.

He looks out the window for a second before writing out the order for treatment -A death sentence. Perhaps he looked out the window afterwards. Somewhere in there, my ancestor disappeared. It is 1966. The Holocaust was a memory. My grandfather’s grave was initially unmarked. For my 9th birthday, my grandmother bought me a grave. She was concerned because many of our family had died without marked graves. We would go for picnics on my grave.

The butter biscuits with verboten country ham were a secret, and delicious. We were vicariously witnessing my death in advance. I am still alive.(sighing).

During this time our brain causes some strange things. I receive an email confirmation of a one-way ticket to Germany, non-refundable. A few moments later I return to discover a subsequent email. Non-refundable email of test private home of a career at the hospital. In 2009 I fly alone to Berlin and I walk the streets surrounding there. Reading the names of the doctors on the walls.

These are names that I recognize. The doctors, the clinics and Aryan specialization. I become so depressed that friends from New York promise to visit me but never arrive. When questioned, they are vicarious witnesses and tell me go to a doctor or a hospital.

My window looks out on the neurological ward so I don’t leave the house. I play chess with the janitor. In 2010 I go for a date with a woman in who I found very attractive. I invite her for drinks at the ball house. Halfway into the date I tell her that I’m researching the Nazi gynecologist who murder mid-ancestors. Kyle.

>>>>KYLE JAYMES DAVIS: Slide reads, Nonagon for the Dead Who are Rising. A call to arms for murdered people who are disabled and a tribute to disability activist, Robin Kilson, around an tract of exploration.

>>QUINTAN ANA WIKSWO: Halfway into the date, I tell her that I’m researching the gynecologist who murdered my ancestors. They said that was my mother’s gynecologist and child doctor in east Berlin a pediatrician, a good man. She was in 1985. I could not stop thinking of her belly button, how he must have tied it off with satisfaction. Are you disabled, I ask her? No of course not, she says. I feel badly for disabled people though. All that can be eliminated with prenatal testing. My mother had three abortions because of that. My brothers and I are quite healthy.

In this massive collection of photographs, essays, poems, short stories, films, I am here. I am not a vicarious witness. I do not sit silent with my legs spread on the gynecologist’s tables. I am not a witness. I hold my hands to each side of my head at the neurology clinics. I will not keep secrets. Aktion T4 isn’t over. It is only beginning. We are living and dying, surviving and being murdered in a complex ecology where the pencil that records these crimes against disabled people has an eraser that has been used so heavily there is none of it left. We must not replace the pencil. We must remain aware of the absent eraser. We must each take that pencil and the sharp point, the part that writes, that tells, that speaks, that records – it is the pencil we must work with. The pencil that only writes, and can no longer erase.

Thank you very much.

>>JULIA WATTS BELSER:  Thank you. Thank you. The stories that you have shared here, here are haunting and powerful. So you trace the sigh erasure and intimate and intricate connections. The architecture of violence and euthanasia. That was not meant to be seen. I’m deeply moved by your work and that the work that all three of you are doing. The work that you are doing to document, to sift and to recover stories and histories that have been erased. We’ll move into some conversation with the audience.

So, I’ll invite those of you who are with us here today, to please, offer your questions in the — using the Q&A feature. If you prefer or if it is more accessible to you, you can also pose them in the chat.

As a first invitation, I would like to pose a question to the panel. Perel, I’m thinking about the story that was told during the clip that you shared. The story about the smoke that rose from the chimneys. I think all three of you, Kenny, Quintan, Perel, all three of you have made the choice to ask about the smoke. To trace its flows. To look at what causes it. To grapple with violence that also has deeply profoundly personal implications. So, I would like to ask, what anchors you as you do this work? What allow you to be present as you do it. What holds you.

>>KENNY FRIES: I can start. I think actually, visiting these places makes me — this is — I don’t know how this is going to sound. I might have to unpack how this sounds. It feels like going home. It feels like being able to – like, rejoin in a type of community, and that is something that I have learned from this is that, community is not only among the living, and we’re not in community only amongst the living. And there are ways in which when I visit these sites, that actually I feel deeper embodiment than I do in my daily life.

Or in the world that is like the material apparent world. So that’s one thing that actually grounds me. But then also, I feel like I have this understanding that I am part of this continuum. Like, a medium or a CONDUIT of these things. And even I think, I mean, Quintan touched on this many times in their talk. But, the ways in which to be  able to unpack the cycles of violence, and look at them.

And once you started to look, you don’t stop looking. And so, it is sort of this choreography of like, you look at something and it makes you turn. And then you look at something else and it makes you turn again. And I think that that’s the way working through this trauma moves through me. So that’s not necessarily like about self care or comfort or certain other things that one might say is grounding.

Spirituality is grounding. But, I think that ground itself in literal sense is grounding too.

I think that it is so interesting to be doing this event with both Perel and Quintan who have been instrumental in my grounding over the time that I have been working on this. I mean, Quintan at the very beginning back in 2013, and Perel more recently, and I think that, all the work that they do and the other work, I mean, you know, Susanne Knittel’s work and, that I’m not doing this alone, I think, is really very important. Although when I write my book, I’m sitting there with my computer alone. But that’s a very grounding thing to have, knowing that they are out there and doing this work in different ways, is very, very important to me.

>>QUINTAN ANA WIKSWO: I would say that my answer is identical to Kenny’s but opposite. Because what keeps me grounded is finding all of the people who are doing this, and while I feel tremendous solidarity with other disabled folks, I feel a stronger mission to inhibit the work of predators. That’s why I keep going.

>>JULIA WATTS BELSER: We’ll take a question now. I’ll read a question from Heidi Haus. Heidi says, thank you all for your beautiful work and for sharing yourselves with us. What has been the most impactful memorable part of sharing your art with audiences?

>>QUINTAN ANA WIKSWO: Quick. My quick answer would be, as an exhibiting artist in institution, you get head counts rather Holocaustish. There’s great bureaucracy especially in Germany around the attendance of his stores. How long they stay, what they do and how they engage. At the end of each exhibition, you get a report back. And I didn’t really expect much from this as Kenny pointed out. It’s not exactly at the top of people’s priorities.

And yet, what I found was that in the history of these museums, these exhibitions had the most repeat visitors of any other. So the same people came multiple times. And people who did not  identify self-identify disabled or Jewish or queer, came the most often. And the guards reported an enormous amount of crying. And I think of that also in the context of white tears. So I say for food for thought, it was fascinating to me this moved outside of the community of disabled, queer, Jewish activists and into the population of European German civilian tourist at art museums. And tears resulted. The pondering of that phenomenon has stayed with me and will always stay with me.

And there isn’t — I will never have an answer for it. But I think that it is — it has left me with a  resounding hesitancy to keep this conversation, these conversations to ourselves as within the disabled community or within the non-disabled community, or to silo ourselves because one never knows exactly who is out there who has done or experienced or knows what.

So the more people in the conversation, the more complex and representative we can actually be.

>> DIANE WIENER: I’m just going to quickly interject, this is Diane here, and say that in the spirit of accessibility and I know we only have a few moments so I’ll be brief. All of the links that have been shared in the chat, all of the resources that have been discussed, all of the images and their accompanying image descriptions with permission from the participants and panelists, any other resources that we have gathered, we will put together in a kind of packet, digitally and accessibly, that will be shared with an accessible video link and all of that listen publicly posted and also shared with everyone who registered to join us today. Even if people didn’t physically or digitally manifest, we’ll make sure that all participants whether they pre-registered or couldn’t come, whatever the case, so, I hope that that answers people’s questions about that and I’m going to back up now and so we have a couple other ones left. Thank you.

>> JULIA WATTS BELSER: Wonderful. Thank you very much. Perel, did you have something that you wanted to comment?

>> PEREL: Yeah, I mean, I would say that, every time I do, (Un)Worthy of Life, the talk show, when it is live, I feel that it is very transformative. And when I say that, it means like, it has all of the levels of impact that happen at one time. Like, the most excruciating types of silence that replicate this historic silence and then sometimes, somebody wants to talk about their relative that they know, was a German soldier, or the story that was in the video that I showed, of dismissal, yet, implication, and then, there are people who really do want to engage with the material and that — and this reality, either because they themselves are disabled or because they are coming to terms with their history or their family’s history here. And in Hamburg, I had separate room after each show where people could come and drink beer, and, talk just to talk about what came up in the show. And, any other thing that they feel relates to this. And I feel like there is always something that I can feel as starting to shift in people from these shows. Even if that is a feeling of people, even if that is people feeling attacked or defensive, there is a shift that begins to occur. And that now, I feel like there’s this transformative work that I am able to touch into and access. And so these are just like some examples of the impact of that.

>> JULIA WATTS BELSER: And we’ll take a question from Beth. Beth asks, I am struck by the notion of refusal and willful ignorance to which you all speak. The refusal to remember, to know, acknowledge and see this history even when so much has been documented, when the smoke was visible. How do you see your work as artists, writers, creatives, humanists, how do you see your work as providing a way to intervene in ways that cannot be refused?

>>KENNY FRIES: That’s a very interesting. That’s a very good question but, I just want to tweak it a little bit. Because I am always very interested, and it is something that Perel has asked in their show and asked people in the video version of it, of how people learn about T4, if they learn. It is not a child’s fault that it is not on the school curriculum. Right? And I think that that’s where some of this begins. This lack of knowing about it. It is not a system. It is not something that is taught on a regular basis. Whether it is in Germany or in the U.S. or every — wherever it is. So sometimes, the refusal born out of the silence or to use Quintan’s word, a secret in a lot of ways. I mean, I who knows more about disability history than most of the people of generic person, you know, out there, I did not know the depth of what happened until I came to Germany and did the research. I knew that disabled people were killed. But I didn’t know the mechanism. I didn’t know about the whole program, et cetera, et cetera, and so forth. So it is very, very interesting for me to learn about how people actually learn about T4 if they have.

And, when Perel and I talked with this group in Chicago that was the basis for this video, it went from, I didn’t know about it until today! Or until I learned there is one person who learned in school when they were younger. But, most people learned in graduate school or in their research. And these are people who are actively searching out and exploring their disability identities. So that Al really is interesting. I don’t know if refusal is in a lot of ways the right word to use.

There are people, and the Berlin, American academy in Berlin, I was sitting next to a board member. And it was at some event.  And they asked me what I was writing about. And I said, you know, basically Nazis killing disabled people. And she looked at me and said, that happened? [Laughter] So is that a refusal or is that — I mean, I don’t know. It is a silence, it is a secret. But I see more than a refusal. I think there’s a refusal to come to terms with it and what it might mean. If that makes sense.

>>QUINTAN ANA WIKSWO: I think I agree fully with Kenny. It is important to note in the post war period, Germany was divided between east and west. And to this day, a lot of when you’re in Germany working on this subject matter, it was mandated by the allies in the victory that many aspects of the Holocaust and T4 were taught in school in the former USSR especially east Germany and east Berlin, this was not mandated. And so often times, I can — you know, kind of correlate exactly to Kenny’s point. It is not the child’s fault for not being taught. And so some people are growing up in an environment in which this is inaccessible information.

How we can make a long-term difference to me, is impediment but I think we have to look at the amount of shame representation, and atrocity that exists within the female identified reproductive. Like, historically, female bodied, now that is changing. Reproductive medical establishment that is full of shame, of being the bad mother, of being the mother of — you did something wrong if your baby is not right. You didn’t eat the right thing. You smoked a cigarette. There is so much shame when I tried to have much of this work exhibited in Germany. And I met with refusal. I would take the women, powerful women in positions of great authority in the industries of academia and art. And they said, you know what? We’ve all — this is too personal and it is opening up a mole hill of shame and guilt and racism that has happened to all of us through the medical profession. So unless we’re also willing to take this conversation to the doctors who are shaming people who are raising children who are gay, people who are raising children who are — and those of us living in that, the denial is also going to be a secret but it is also going to be shame and embarrassment that there’s something wrong with this life that I’m responsible for. Be it mine or PRODIGY and that’s literally deadly.

>>JULIA WATTS BELSER: Thank you and I want to acknowledge that your answer there also really speaks to Diane Coleman’s question who asked about the importance of and the ways of bringing this history to medical education. So thank you. We’re going to turn now Ma’ayan Simon. I’ll get you here in Zoom to unmute.

>> MA’AYAN SIMON: Hi and thank you. You can hear me, yes?

>>JULIA WATTS BELSER: Yes.

>> MA’AYAN SIMON: Hi, thank you so much. This work is stunning. And I just feel like it is a travesty on so many levels  but also that I am queer and Jewish and disabled and have not been familiar with any of you and your work. I also wanted to share, and I have a question related to this, that I have two younger brothers who are in their late 20s now who I grew up with who are both adopted from Jewish  families. And they both have Down syndrome and other disabilities. At birth we only knew about the Down syndrome. One is ashcans city and other is — But one of my brothers, his grandfather was a Holocaust survivor and got in touch with our family and said, he never knew what happened to my brother. He knew that his daughter had a baby, and then, the baby wasn’t around any more. You know, because the baby was adopted by our family fortunately and not institutionalized. I’m not trying to say our family is like so fantastic but, there are other alternatives that could have been much worse, right. But, I guess I’m just wondering if any of you have observed any of those connections of people who have been directly or indirectly impacted by the Holocaust, how it has affected their relationship with disability. I also think of the erasure in my brother’s case with his biological siblings. He has two younger biological siblings who have no idea that he exists so he was essentially erased from his family’s history. According to him, he has the best siblings ever, you know, in our — in my family that he grew up with. So but anyway, I’m just curious because to me, I see the work that you’ll doing in terms of research and I see it directly connected to Jewish families potentially. I’m not saying always but giving up their children who have apparent disabilities for adoption. And I’m just sort of curious if  you have reflections on that or if any of your work has explored any of that. And thank you for give leg the grace of a long sort of sharing question.

>> JULIA WATTS BELSER: Thank you very much, Ma’ayan. Are there panelists that would like to speak?

>> I mean, just I think just because — I think it goes back to what Quintan touched on is the whole idea of shame and the whole idea of shame around disability, you know, travels amongst everyone. Through class, race, gender, et cetera, et cetera. And the idea, one of the reasons that historically the way people who are killed in T4 have been remembered are by the first name and an initial. And that has a lot to do with the shame of the surviving families and also some medical privacy laws in Germany which I think are also basically shame based. But the whole idea of.

>> We can spend the whole course on the differences and similarities between the Holocaust and the killing of Jews, and, but I think that what ties a lot of this together, is shame. But, especially around the disability and killing of disabled people.

>>JULIA WATTS BELSER: Thank you so much. Kenny, Quintan, Perel, thank you to everyone who has asked such profound and striking questions – as anticipated we have more questions than time. And so I’ll turn it over to Diane to offer closing words and also share an opportunity for those who still have questions, to reach out afterwards. Thank you.

>>DIANE WIENER: Thank you so much. I’m processing the complexities and power of everyone’s respectful remarks and depth of feeling and the gravity of it, and, as also a Jewish queer disabled person, I’m aware of the nuances of my own perceptions as a host and also as a listener. So, I want to share briefly that, we did of course take notice of the fact that there were numerous comments and questions that we did not have an opportunity to get to we also have run over a little bit here or rolled continuously. And, we don’t want to not respect people’s time. So, what I want to do is see if any of you had question or comment that wasn’t addressed we have access to the Q&A function and we’ll be able to save a copy of that and also the chat, and any of the communications that have occur there. And I’ll ask the panelists and Julia as our moderator if anyone has the opportunity, I can’t expect that of people, but I’ll ask if anyone wishes to, if they have the band width and the spoons as some might say or articulate otherwise, to, they are welcome to comment and so, we’ll do that. I hope that helps. And, I want to share these remarks Steve Kuusisto. These are on Steve’s behalf and this is his language quoting in parts.

As we bring to a close this remarkable and timely panel on Aktion T4 and its ongoing legacies, I want to share a quote from Judith Butler I’ve long admired. She was essentially writing about the connections between emotional intelligence and activism. Butler said: “You will need all of those skills to move forward, affirming this earth, our ethical obligations to live among those who are invariably different from ourselves, to demand recognition for our histories and our struggles at the same time that we lend that to others, to live our passions without causing harm to others, and to know the difference between raw prejudice and distortion, and sound critical judgment.”

I repeated a line because of my bifocals, but hopefully that made sense. The lives of the disabled are under fresh attacks. And this is Steve again. From medical science, Social Darwinism 2.0  (with its revamping of “useless eaters”) and today’s discussion reflects our work ahead, to recognize our histories and struggles as we lend that knowledge to others with sound critical judgment. Thank you for joining us. I think we can turn off the recording.