November 19, 2019
Growing up, I did not know about disability rights. During most of my formative years, I thought I was a broken person who caused my family to fight; I thought that I had to overcome and fix my disability. This was the case until I learned about disability rights in a college class.
To be honest, I am not sure why I took that class. Maybe it was because I went to that college—they had good supports for learning. Maybe it was the course description. I must have really wanted to take that class though, because it was the first night class I ever took. That class opened me up to ideas that changed my life and the course my life would take.
I learned about disability as not just a medical condition existing inside the disabled person but as something that is societally influenced. This perspective sparked a change in the way I looked at myself and how I viewed the world. It also gave me a foothold on a trajectory; no one had ever career planned with me, and, at that time, I had not declared a major, and had no idea what I was going to do after college.
I found what I learned in that class to be extraordinary. Learning about the idea that disabilities are viewed through the medical model—which understands disability as a deficit and as something to cure—helped me to understand why I viewed myself the way that I did, at that time. Later, I would learn that my perspective on myself (my self-concept) was informed by internalized ableism. The class pointed out that disability is at least in part socially and culturally constructed, connected with an understanding of societally influenced beliefs that could be applied to many marginalized identities. Most importantly, I learned that disability was something that could be perceived as an identity to be proud of. At that point, though, this was a place for self-empowerment. I did not intend to be a blogger nor did I think about going into the fields of disability rights and justice.
That perspective changed after I graduated from college. Once out of college, I started my own organization. Through that experience, I decided that part of what I would do would be advocacy, by blogging and giving public presentations. I started to do this work hoping to be able to talk about disability rights and to help people learn from my experiences in a way I wished I knew when I was younger. I wrote blogs about my own experience, culture, and disability, as they related to conceptual frameworks that were important to me (including neurodiversity, ableism, and inclusion).
I have written about many different topics, including how calling someone inspirational is not a compliment, why it is important that disabled people and not others lead the disability rights movement, and how Frankenstein by Mary Shelley has a disability rights narrative that critiques the medical model of disability.
I write for a few reasons. One of the main reasons is to be able to express myself. Whether it is about my thoughts, fears, or things I notice, I write as a way to interact with the world. I write as a form of therapy—to enhance my self-acceptance, by describing and understanding how I move through the world, and my experiences having a mind that does not fit the normative mold (I am Autistic and a member of the neurodiversity pride movement). I also write to educate others about some of the experiences people with disabilities or disabled people have as well as to underscore concepts about disability rights. One of the things that I felt when I took that class and my eyes opened up about disability rights and justice is that I wanted people—especially those with disabilities—to understand all of this, so they could have a better experience than I had growing up. I wanted them to understand that disability is not just about a lack of ability, but, instead, can be understood as a part of diversity and human experience that is important to the world. I love the ideas of disability studies: that disability intersects with other identities people have (in terms of race, gender, sexuality, etc.), and that we should value and respect all people.
As a blogger, I am able to combine my interests in history, culture, rhetoric, communications, sociology, psychology, philosophy, anthropology, and various civil rights movements with my own experiences. I have always been interested in why and how different societies (particularly Western societies) formed the way they did, and continue to form, adapt, and change; being able to examine disability and other identities and history gives me a chance to do that, as well as to combine this attention with the other reasons I write.
I am lucky to be able to continue to do this writing in my work for the Burton Blatt Institute (BBI) in general and the Office of Interdisciplinary Programs and Outreach (OIPO) in specific. These writing opportunities are especially present with my work around Supported Decision Making (SDM). In this work, I have written a few articles that are blog-like and based on my personal experience. SDM is an emerging principle that connects disability guardianship to systems of interdependence and ideas around independence. SDM is being talked about as an alternative to guardianship.
Even though I have not been considered for guardianship, I write about how SDM could be helpful to me; I connect concepts of support and interdependence with other ideas that may have a universal aspect or appeal, to some extent. For example, we can see other cultures’ family systems and even bigger systems existing around an idea of shared collectives. We can apply this idea to understand the growing of human culture from a time of hunter-gatherers to present day society. In the United States, we do not all make decisions 100% by ourselves; there are times we ask for support or get advice from experts. Being able to write about and do work around SDM, and now working with OIPO, provide me with the opportunity to learn more and write about many interesting ideas on disability and its intersections.
My experience blogging has been a largely positive one. I have heard from many people about how the articles provide them with insights, or that they feel my description of my experience is similar to their experiences. In so many ways, I have found blogging to be cathartic: as a mode of expression, and, sometimes, as a way to provide and receive validation for experiences and ideas. I am glad to continue to do so and hope to keep blogging throughout my career.