RCAD: General Experience with Disability

1.  What is your experience with disability? — Do you have disabilities? Do you have loved ones who live with disabilities? Do you work with people who have disabilities? 5)What are some significant moments/events in your life that connect to disability? — For example, you can talk about hearing a diagnosis for the first time, meeting a role model, learning something important that helped form your understanding of disability, etc.

I discussed my various disabilities in the previous post, in this one I’ll focus on my broader disability awareness. When I was first told about Asperger’s Syndrome, I rejected the label- it sounded too negative. Even so, as a kid, I went to Camp Courageous of Iowa, with kids will all different types of disabilities. Even though, at the time I didn’t really identify as disabled and thought that the doctors were “lying”, I came to better understand and empathize with people with disabilities from that experience. After we moved to Minnesota, I and my brother both attended Camp Discovery or Camp Hand-in-Hand, both run by the Autism Society. Being around other kids with Asperger’s, I felt “normal” for once, and came to see it as a set of differences that are a disability in broader society. I reclaimed it as part of who I was, and made it my own, rather than a file that belonged to doctors and my parents.  These camps are held at sites owned by Courage Center in Golden Valley, and there are sessions for many types of disabilities, for both children and adults. Since there were several sessions for Deaf people, many of the staff are Deaf, and each cabin had a Deaf counselor. We learned some sign language as one of the camp activities, as well as informally, and I know one camper who took classes in ASL at St Paul College and was planning on getting certified to be an interpreter. I’m not sure if she has finished with this training. Anyway, I think the interaction between autistic and Deaf people is particularly interesting, since autistic people tend to have trouble reading and using body language, learning sign is a great way for us to learn body language and emotional expressions more systematically and explicitly, and it has potential as a form of communication for non-verbal autistics. Having adult autistics working at the camp- each cabin had one called a Mentor was also amazing, and I become a Mentor myself and worked as one for 7 sessions over the years.

I attended Augsburg College, which has great programs for students with both physical and learning disabilities. I will talk more about accommodations in a later post.  But anyway, in some respects college was like a grown-up version of going to the Courage camps- I had many friends with various types of disabilities, particularly in Queer & Straight in Unity and we helped each other when needed, and you didn’t feel like you constantly needed to explain yourself and your needs- a little here and there yes, but for the most part these differences were pretty well understood and accepted. All the roommates I had throughout college had Asperger’s or other learning disabilities, and one roommate used a wheelchair. Having him as a roommate definitely raised my awareness of accessibility issues, we’d go around, plan various social activities and realize “Oh, crap, Levi won’t be able to get in to that place!”

Questions from 30 Days of Mental Illness Awareness-

6: Do you have a family history of mental illness or mental health issues? (Caelesti’s note: I’m including anything that falls in the DSM-V, such as developmental & learning disabilities)

Ah, yeah you could say that! Especially on my mother’s side- I call the range of symptoms they have “the O’Leary spectrum”. My dad has Attention Deficit Disorder & depression (including Seasonal Affective Disorder) , and my mother has Obsessive Compulsive Disorder (OCD) and a mix of anxiety and depression (I’m not sure of specific labels) My brother is on the autism spectrum, also has ADD and depression. Several of my mother’s siblings and some of their children have various mixes of depression, anxiety, obsessive compulsive symptoms, AD/HD, and one person is bipolar & dyslexic. My mother’s fraternal twin sister is very calm and clear-headed in an odd contrast to the rest of her siblings!

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Deafness as Disability

I’m reading The Mask of Benevolence by Harlan Lane. In it he argues that various professionals that claim to help the Deaf community are actually harming them. I was reminded again by the book about how many Deaf people do not see themselves as disabled, but rather as a linguistic/cultural minority. That the Americans with Disabilities Act mandated certain changes, like mainstreaming of deaf students that actually held them back. Education of the Deaf might be more comparable to ESL/ELL than to other special education programs. If everyone knew ASL, maybe deafness wouldn’t be much of a disability. But as it is, though Deaf people can live very full lives and can do most things that hearing people do, they are still subject to inherent disadvantages of being deaf, and discrimination. The ADA protects  Deaf people from such discrimination but only if it’s classified as a disability. Sorry guys, you can’t have it both ways.

A few years back when I wrote a paper on the disability rights movement, I included a section on the Deaf President Now! movement at Gallaudet University. But was that appropriate? Are Deaf people part of the disability community or rights movement or should they be seen as separate if they want to be? DPN happened in the 1970s as other aspects of disability rights were emerging. Obviously, the Deaf movement is part of a larger social trend towards self-determination and changing social views of disability.

Another thing that bothers me about the “we aren’t disabled” argument is the sense that they see themselves as better than people with other disabilities. Now to be fair, there has been a similar tendency among the Asperger’s/high functioning autism community to reject the “disabled” label. I myself have questioned this.

We might actually have a better case for that- after all there is nothing that all AS/HFA people are incapable of doing, like hearing, seeing, walking, reading etc. However our brains are wired differently in a way that gives us disadvantages in society.

I’d like to reach out a hand to Deaf people and say, we would like to be your friends & allies. You have a distinct community, culture and movement that gives us a lot of inspiration. Most of us may be hearing but face other challenges, so we empathize with you. We understand what it’s like to feel excluded from society. So let’s work together.