Living Without Question

Filed Under (Acceptance, Activism, Advocacy, Discrimination) by Estee on 27-04-2010

At Toronto’s Sick Children’s Hospital, we got Adam’s EEG done today, I’m relieved to report. Adam, Grandma and I went together and I’m glad we shall get some information after the few months we’ve had (see previous posts on body jerks/spasms). I’m too tired to write too much at the moment — the sedative was so strong I could not leave Adam’s side all day — but, I do have to say that I get asked a lot of questions about autism when I go to Sick Kids. As I try to soothe my son from a stinging needle in his muscle, I get asked

When was he diagnosed?
How did you know?
How did it look?
Was he detached from you from birth?
Did he line his toys up?

Yada yada.

Please don’t get me wrong. I do not mind answering questions, but I also need to attend to my son. I suppose I should say I do not mind in the appropriate context. I would rather come in and answer any question on another day rather than be asked with Adam listening as if he’s not in the room. Indeed, I did mention something as politely as I could.

It’s a bit of an issue for us parents and for autistic people, this having to answer all of these questions all of the time. Yes, I mean every time we step out the door. Yet others have to understand that part of our willingness to answer such questions is also an attempt to be able to move on in our lives without having to explain ourselves — “us” being parents of autistic people or autistic people themselves.

Sometimes I wonder how far we’ve come in autism “advocacy” — if we are doing more harm than good. If people were not classified in the first place, if a statistical norm was never invented (indeed it was in the nineteenth century by the medical and legal communities in order to deem who might be dangerous in society — all based on possibility, not on facts…read Foucault), if autism and autistic people were not as targetted in the media as “abnormal,” if we were truly a more accepting society of all forms of human, we might not have to live our lives constantly having to answer how we exist and how we came to be.

Isn’t this what we’re aiming for — to live without question?

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.