Mizuki Hsu

Mizuki Hsu

Leading Japanese disability advocate, Mizuki Hsu, has been appointed a Burton Blatt Institute (BBI) Visiting Fellow during Fall 2015. Ms. Hsu will be in residence at BBI’s Syracuse offices to examine and partner with BBI staff on topics including employment of people with disabilities.

Although Ms. Hsu lost the ability to walk when she was two years old, her parents advocated for her to receive the same educational services as did non-disabled Japanese students. At the age of 17, she had a chance to visit Australia and was impressed by the advanced infrastructure and accessibility there. Since then, she became interested in knowing more about welfare in developed countries. With those thoughts, she went to The University of Wisconsin River Falls in the U.S and received her B.S. in Communication Studies and International Studies. After returning to Japan, she worked with three companies in Tokyo and volunteered at a non-profit which publishes a magazine for women with disabilities.

Her research focus at BBI is “How to Maximize Inclusion of People with Disabilities in the Workplace.” Ms. Hsu will take her research findings back to Japan to work on increasing employment opportunities for people with disabilities in Japan. She personally had a hard time at building a good career, encountering numerous barriers to accessibility and discrimination against persons with disabilities.  Her current project, sponsored by the Duskin AINOWA Foundation, is to improve equal employment opportunities for people with disabilities in Japan by learning how U.S. companies, non-profits, and governments implement employment equality strategies and policies efficiently and successfully. “Employment and economic participation is the gateway to full participation as a citizen, in communities, and in life.  We look forward to learning more about Japan from Ms. Hsu and sharing successful strategies for inclusion based on our research in the U.S.” says Dr. Peter Blanck, University Professor and Chairman of the Burton Blatt Institute. In addition to her main research project, Ms. Hsu will support ongoing research and projects being conducted by BBI to improve economic and community participation of people with disabilities.

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Benoit Eyraud

Benoît Eyraud is a senior lecturer at the University of Lyon, a team member of POCO (Policies of Knowledge) at the Centre Max Weber and a delegation researcher at the Study Centre for social movements (CNRS/EHESS/Paris).

After leading various research programs on regulation restoration in the fields of mental health, disability and dependency within the framework of Collectif Contrast, Benoît Eyraud introduced a scientific and citizen-based initiative on the challenges of exercising rights for persons with disabilities (Confcap Capdroits). From this perspective, he is particularly interested in issues of civil capacity and the controversy surrounding Article 12 of the UN Convention on the Rights of Persons with Disabilities.

Within this context, Benoît Eyraud was also a participant in the inter-ministerial work group for the legal protection of adults and is an expert member of the well-treatment committee, a joint member of the National Advisory Committee for Persons with Disabilities (CNCPH) and the High Council for Family, Childhood, and Ages of life.

He is scientific director of the ANR Acsedroits project and the participative action-research program Capdroits (CNSA).

Featured recent publications:

  • Presumption of Capacity and Vulnerability in context of dementia:Exercising rights in troubled civil life, Culture Medicine and psychiatry (to be published 2019
  • La participation des personnes en situation de handicap au débat démocratique :Retours sur une démarche collaborative autour de la CDPH / Participation of persons with disabilities in democratic debate: looking back on a participative approach about UN Convention on the rights of Persons with disabilities, Participation, revue de sciences humaines et sociales, 2019
  • Choisir et agir pour autrui? Controverse autour de la convention de l’ONU sur les droits des personnes handicapées (avec C. Hanon et J. Minoc), Doin, 2018
  • Contrainte et consentement en santé mentale, forcer, influencer, coopérer (avec Livia Velpry et Pierre Vidal-Naquet), PUR, 2018
  • Civil capacity and legal restrictions : a scientific and citizen based forum and action in support of a change of outlook and practices (2018), Download the Platform for Advocacy booklet
  • All vulnerable, all capable, Capdroits Manifesto (2018)

Deepti Samant Raja

Blending backgrounds in Electrical and Computer Engineering (with a focus on Telecommunication) and Rehabilitation Counseling, Samant Raja brings in over nine years of experience promoting the social and economic inclusion of people with disabilities focusing on assistive and accessible technology service delivery, breaking workplace barriers, and technology use for successful employment outcomes. Until recently, Deepti Samant Raja was the Director of International Programs and a senior researcher at the Burton Blatt Institute at Syracuse University.

She is a lead researcher and involved in project management for the Center on Effective Rehabilitation Technology service delivery, a $2.5million, multi-organizational center, that focuses on identifying and analyzing effective models of technology service delivery for successful employment outcomes for persons with disabilities. She is working as a policy researcher for the Office of Disability Employment Policy (ODEP)-funded Accessible Technology Action Center with a focus on offering recommendations for internal policies and external practices that strengthen ODEP’s work in supporting multiple stakeholders to improve the work experiences of persons with disabilities through accessible technologies. She has participated in instrument design, data collection, and data analysis on multiple BBI research projects, including employer case studies funded by the US Department of Labor. She was a key member of the research team investigating the costs and benefits of technology-based workplace accommodations under the Rehabilitation Engineering Research Center (RERC) on Workplace Accommodations as well as the research consortium that undertook employer case studies funded by the US Department of Labor focusing on employer practices and workplace culture that facilitate the inclusion and productive employment of persons with disabilities. She participated on a Department of Veterans Affairs study investigating effective employer practices, policies, and programs for Veteran employees including those with cognitive and intellectual disabilities.

Samant Raja also worked for the Secretariat of the Global Partnership for Disability and Development, where she oversaw capacity building, knowledge creation, and dissemination activities to mainstream disability in development. She coordinated a demonstration project in mainstreaming disability in poverty reduction and other development strategies in Mozambique, and managed a team of consultants working on a study of inclusive disaster management practices in Bangladesh, Indonesia, and the United States.

Samant Raja has published articles and presented on accessible Information and communications technology (ICTs), access to assistive technology, and inclusive employment and effective corporate practices. She serves as an invited member on key international task forces, including the UNICEF Task Force on Assistive Technology and Children with Disabilities, and was as the Co-Chair of the community of practice on Access to Justice for Persons with Disabilities of the World Bank’s Global Forum on Law, Justice and Development in its inaugural year. Samant Raja has a Master of Science in Rehabilitation Counseling, a Master of Science in Electrical Engineering, and a Bachelor’s degree in Telecommunications Engineering.

Nienke Dosa

Dr. Dosa is a pediatrician with board certification in Neurodevelopmental Disabilities. Her clinical practice is the care of children, adolescents, and young adults with spina bifida, cerebral palsy and vision impairment/blindness. Her academic work is focused on the development and evaluation of community-based models for developmental disability care, particularly as this relates to transition to adulthood and inclusive fitness.

Katherine McDonald

Dr. Katherine (Katie) McDonald is a Professor of Public Health in the Falk College of Sport and Human Dynamics and a Faculty Fellow at the Burton Blatt Institute at Syracuse University. Dr. McDonald received her B.S. with Distinction in Human Development and Family Studies with a minor in French from Cornell University and her Ph.D. in Community and Prevention Research Psychology from the University of Illinois at Chicago.

Dr. McDonald uses ecological theory and social action research to understand and promote the community integration of individuals with disabilities.

Her current research spans two core areas of inquiry.

(1) Respectful, Inclusive Research with Adults with Intellectual and Developmental Disabilities: Dr. McDonald studies human research ethics, with an emphasis on the research participation of adults with intellectual and developmental disabilities. Her long-term goal is to contribute an empirical perspective to respectful, inclusive research practices for adults with intellectual and developmental disabilities. Her mixed methods work in this area includes an array of stakeholders as research partners and research participants.

(2) Participatory Action Research Addressing Disparities: Dr. McDonald conducts collaborative research with community-based organizations and community members on health, education, community and employment disparities experienced by individuals with disabilities. One long-standing collaboration is the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE; www.aaspire.org ). AASPIRE conducts research on the needs of autistic adults through academic-autistic partnerships, including studies on access to quality healthcare and employment experiences. With several ADA Centers (http://adata.org/ ) and universities, Dr. McDonald conducts research on community participation among adults with disabilities. She is also working with United Cerebral Palsy to build a network of people with disabilities prepared to engage with and in patient-centered outcomes research (http://mylifewithoutlimits.org/speak-for-yourself/ ).

Dr. McDonald received the Stevens-Shapiro Fellowship from the International Association for the Scientific Study of Intellectual Disabilities (IASSID), the Early Career Award from the American Association on Intellectual and Developmental Disabilities (AAIDD), and was an International Visiting Fellow at the University of Western Sydney in Australia. Dr. McDonald is a Fellow in the AAIDD, and Chair of the Institutional Review Board (IRB). Dr. McDonald previously lived in community with individuals with and without intellectual disability in a community of L’Arche.

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Doug Kruse

Doug Kruse has a Ph.D. in Economics from Harvard University. He conducts econometric studies on employee ownership, profit sharing, disability, worker displacement, pensions, and wage differentials.

Professor Doug Kruse’s book Profit Sharing: Does It Make A Difference? won Princeton’s Richard A. Lester prize as the year’s Outstanding Book in Labor Economics and Industrial Relations. His recent co-authored books include The Citizen’s Share: Reducing Inequality in the 21st Century (Yale University Press), People with Disabilities: Sidelined or Mainstreamed? (Cambridge University Press), and Shared Capitalism at Work (University of Chicago Press). He has published over 100 scholarly papers, including articles in peer-reviewed journals such as Industrial and Labor Relations Review, Economic Journal, Human Resource Management, Monthly Labor Review, and Industrial Relations.

He has testified four times before Congress on his economic research, and conducted several studies for the U.S. Department of Labor and for the U.S. Department of Education’s National Institute on Disability and Rehabilitation Research.

Professor Kruse served as Senior Economist at the White House Council of Economic Advisers in 2013-2014. He is also a Research Associate with the National Bureau of Economic Research (Cambridge, MA), a Research Fellow at IZA – The Institute for the Study of Labor (Bonn, Germany), an editor of British Journal of Industrial Relations, and was appointed to New Jersey’s State Rehabilitation Council and the President’s Committee on Employment of People with Disabilities.

Academic Profile Doug Kruse

Paul Harpur

Dr. Paul Harpur has been appointed a Burton Blatt Institute (BBI) Distinguished International Visiting Fellow during February, 2016. Dr. Harpur is a tenured academic at the TC Beirne School of Law at the University of Queensland.  The TC Beirne School of Law is a research intensive institution, which in the 2015 QS World Rankings was ranked the 49th best law school in the world.

Dr. Paul Harpur’s research analyses the practical and theoretical operation of laws and institutions that impact upon equality for persons with disabilities.  This research agenda considers the capacity of persons with disabilities to exercise various rights protected by the United Nations Convention on the Rights of Persons with Disabilities.

Dr. Harpur brings his personal experience to his research, being totally blind, a former Paralympian and practicing lawyer, in addition to his extensive research experience.

Dr. Harpur’s research focus at BBI is on his contracted book with the Cambridge University Press, “Disability Human Rights: Opening the Book for Print Disabled”.

People read for education, employment, health and to participate in the economic, cultural and political life of their community. People with print disabilities, such as blindness, low vision, mobility impairments and dyslexia, depending where they live in the world, can access between 7% and less than 1% of the world’s 130 million titles. Standard paper books require scanning and alteration so that persons with print disabilities can access them.  This is an expensive and time consuming process for the 17 million print disabled in the US and even more difficult for the estimated 300 million print disabled in less wealthy countries. Unlike books printed on paper, E-Books start digital and have the capacity to solve the book famine. As the numbers of commercially available E-books grows through the thousands and into the tens of millions, the dream of universal access could be a reality. To realise the potential of this, technological changes will require a paradigm shift in how laws and institutions balance copyright and human rights. Dr. Harpur’s monograph will critically analyses the role of laws and institutions in enabling and disabling access to the written word.  Historically, laws and institutions constructed disability access as an exception which was partially tolerated.  A new disability human rights paradigm has emerged which is placing human rights over copyright interests. The new disability human rights agenda is connected with a range of legal and policy developments at the international and national levels.

Academic Bio for Dr. Paul Harpur

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Aisling de Paor

Dr. Aisling de Paor, Lecturer in Law at Dublin City University and Honorary Fellow at the Burton Blatt, Syracuse University, New York has recently been awarded a Royal Irish Academy Charlemont Grant to travel to the Burton Blatt Institute in June 2018.

While at the Burton Blatt Institute she will collaborate with Professor Peter Blanck on a research project entitled ‘Gene editing, disability and the UN Convention on the Rights of Persons with Disabilities – emerging law and policy perspectives.’ This research highlights the concerns raised as genetic science and technology advances, including the consequences for disability rights. On examining international human rights perspectives, it looks particularly at the United Nations (UN) Convention on the Rights of Persons with Disabilities and how it can be applied to develop best practice in this area. It will focus on cutting edge developments in the field of gene editing and the ethical, legal and regulatory concerns that are quickly emerging in this area.

CRISPR/Cas 9 is a gene-editing technology at the cutting edge of science and medicine, and is gaining attention worldwide. CRISPR/Cas 9 may ultimately be used to eradicate serious disease, such as hereditary neurological conditions, cystic fibrosis and different types of cancer, thereby preventing genetic- based disease, with consequences for future generations. It therefore has wide-ranging implications for medicine, society and the human race. Recent developments in the area of gene editing (in the United States, United Kingdom and elsewhere) signal significant advances and growing application of this new technology in the future.

Although offering substantial opportunities for understanding health and medicine, the emergence of gene- editing highlights a minefield of ethical, legal and practical challenges in both clinical and commercial contexts, and in society. In addition to the safety concerns arising with these genetic techniques and the unknown medical implications of gene editing for future generations, there are many ethical and legal questions arising. One concern centres on the potential trend towards embracing ‘designer babies’ and facilitating the selection of embryos based upon genetic desirability. In addition to offering the possibility of eradicating human disease, developments in gene editing open the door to engineering the genetic makeup of children and selecting traits and characteristics such as hair and eye colour, intelligence, or sporting ability. Disability perspectives are particularly relevant in this area. Advances in the field of genetics provide a new lens to view, identify and now eradicate disability. With developing gene- editing technologies there is a concern that the technology will be used to screen out disability, difference and diversity in society, provoking a range of human rights concerns for persons with (current and future) disabilities.

A regulatory vacuum in this area signals the need for caution and there is a growing need to address the complex ethical and legal concerns that accompany use of these new technologies. This research will examine the need for regulation to prevent misuse of these new technologies and also to facilitate safe and ethical scientific advances. In addition, it will identify further strategies for addressing this area, such as awareness raising and education, and public consultation and engagement on these issues. The proposed research will make a valuable law and policy contribution to this area, particularly in presenting disability perspectives, and in using the UN Convention on the Rights of Persons with Disabilities as a tool to guide best practice in this area. This collaboration between Dr. de Paor of Dublin City University and Prof. Blanck of the Burton Blatt Institute, Syracuse University will strengthen the research base in Ireland and the United States, and contribute to knowledge and policy-making in this field.

While visiting the Burton Blatt Institute, Aisling will also give a research seminar to the faculty at the Burton Blatt Institute, and other academics and students at Syracuse University on the topic of genetics law and policy, specifically on gene editing, disability and the UN Convention on the Rights of Persons with Disabilities.

G. Anthony Giannoumis

Norway disability researcher and advocate, G. Anthony Giannoumis, has been appointed a Burton Blatt Institute (BBI) Visiting International Research Fellow . Mr. Giannoumis will be instrumental to the research team at BBI on the Global Public Inclusive Infrastructure – Automated Personalization Computing Project (GPII-APCP).

Anthony’s research focuses on technology law and policy. He is currently researching the implementation of policies aimed at ensuring equal access to technology. His research interests include universal design, international governance, social regulation, and standardization, and he has also conducted research on assistive technology, and intellectual property.

He is currently an assistant professor of universal design at the Department of Computer Science at Oslo and Akershus University College, a researcher with DISCIT – making persons with disabilities full citizens, and a legal and ethical advisor for Cloud4All – Cloud platforms lead to open and universal access for people with disabilities and for all. He is also a PhD candidate at the Faculty of Law at Maastricht University.

Anthony has previously been awarded a Marie Curie Fellowship and has been a visiting researcher and guest lecturer at Syracuse University, the University of Ireland, Galway, the University of Ireland, Maynooth, the Communications University of China, the University of Rome and the University of Padua.

Alan Foley

His research is interdisciplinary, located at the intersection of disability, technology, and design. It is focused on issues of equity and access to technology and he approaches this from both theoretical and empirical perspectives. His research currently has three primary, interrelated foci: (1) The exploration of how constructions of disability and technology affect access to education; (2) Inquiry into the accessibility of Internet technologies; and (3) Design and development research on access to education via mobile technology and mobile learning.

View full bio here.