I have to preface this post by saying I’m still grappling with all of this. I recognize that while I can intellectually understand something, it takes me much longer to completely “get it” to the degree that I can own it and incorporate it into my thinking. Perhaps this is a specific quirk to my neurology… Here goes – Yesterday afternoon something came up that I didn’t understand. It was surrounding the words “disability”, “impairment” and the role society plays. It was stated that autism is a neurological difference that can create certain impairments. Impairments that can lead to disability when not accommodated. I didn’t understand the concept at all. I couldn’t wrap my mind around society’s role in creating disability by not accommodating. I need to backtrack here for a second. Stay with me…
My father was in a wheelchair the last decade of his life due to a horseback riding accident that occurred when he was 40 years old. Most of us, who do not require a wheelchair, probably don’t think about what can happen to the human body as a result of not being able to stand and walk around. There are things that often occur as a direct result of being in a wheelchair for the majority of one’s waking day. Things like sores, atrophied muscles, metabolism changes due to inactivity, which can lead to constipation, a greater risk for infection, etc.
My father’s accident was my introduction to “disability” as the word my father used to describe himself. I didn’t spend much time thinking about society’s role beyond the easy to spot prejudices people obviously had upon seeing him, how some people were worse than others, either in the way they spoke to him with barely concealed pity or the way they raised their voice or slowed their speech as though he were intellectually impaired as well. I was acutely aware of the many places he could not go because they were not accessible to his wheelchair. And I was aware of the physical pain he was often in. But I didn’t think society played a role in creating his disability, but rather it exacerbated it.
I’m going to interrupt this train of thought for a second while you watch the following short video (1:26) via Ollibean, the terrific site that “unites disability-centric news & editorial led content- connecting families, self-advocates, & professionals through social conversations.”
This article (by Lisa Egan) is a great one, sent to me by the wonderful, incredibly, kind and extremely thoughtful, Nick Walker, who is interviewed ‘here‘ on Shrink Rap Radio. After I watched the video and read all the links, I felt I was beginning to understand.
My father’s accident left him physically impaired, but with the necessary accommodations in place he could still get around and do many of the things he enjoyed. His quality of life was greatly reduced because many of the things he once enjoyed, playing tennis, skiing, were no longer possible, but he could do other things, swimming, gardening, spending time outside. (Still, I feel confusion and can tell, I’m not quite there yet. I think I have an understanding, without completely understanding, if that makes any sense. And I’m also getting hung up on semantics. But I have to keep going with this.) I understand my father was impaired, but was he disabled? Obviously he was to the degree that society didn’t do a great job accommodating him, but what about his weakened body and the pain he was in that kept him from pursuing things he enjoyed and would have done had he not been in such physical pain, such as travel?
*Those of you who understand all of this, please feel free to jump in and correct me. As I said, I am processing!
Autism. When my daughter was diagnosed I didn’t think of her as disabled, in fact I remember resenting the notion that anyone might think of her as such. I understood she was different, and, sadly, I also bought into the “disease” thinking, which I’ve written about on this blog. As my thinking evolved I thought of her as neurologically different from the majority of people and as such would face more challenges in the world, than if she were not Autistic. Still later, and more recently I thought that because she cannot reliably use either speech or independent typing to communicate yet, she had a disability, but that her disability had little to do with society and was very much a result of the many issues she faced, physically, emotionally and neurologically.
The idea that society could and should do more to accommodate her and those like her is something I have witnessed first hand and am fighting for. Yet, this idea that society created her disability, either some or all of it, is a new concept. So last night I spent many hours reading. This post from Savannah on her blog, Cracked Mirror in Shalott is terrific with great links to four other bloggers whose work I have tremendous respect for: That Crazy Crippled Chick – A Musing on the Word Disabled, Radical Neurodivergence Speaking – In this place, in this activity, I am not disabled, Yes, That Too – Ablism is to Blame and Autistic Hoya – Constructing Disability. And finally this piece from Sparrow Jones, Voices of Experience on her blog Unstrange Minds where she writes, “In contrast to impairment, Reindal writes about disability as the “barrier to being,” suggesting that the social constructs that view those with impairments as lesser beings, not worthy of inclusion or accommodation, creates an existential crisis that extends deeply into the disabled person’s core being.”
And this is why all of this matters so much. Because we as a society are adding to impairment. My child is Autistic. There are things that are much harder for her to do than the majority of the population. Her hardship is exponentially increased by society’s lack of accommodations for her and those like her. This post about my experience at the AutCom Conference last fall is an example of simple accommodations easily put into place. My daughter’s life will be infinitely easier if people were better informed about autism and what that means.
Society plays a role in all aspects of her life, from the education system and how we perceive inclusion, to air travel, where she could be allowed to sit by the window to accommodate her need to look out the window to better manage her stress, just as someone in a wheelchair is given an aisle seat and not expected to sit just anywhere. I could go on and on, but I’m interested to hear from all of you and hear your thoughts on all of this.
Emma and Henry type to each other with Pascal and Harvey’s assistance
Emma's Hope Book 