Wednesday, February 16, 2011

A good way to tick me off

You know what's a good way to piss off an autistic person?
Tell them you don't think it's a good idea to have an autistic person on a panel talking about autism. Or talking about, better yet, how you don't see the point to having an autistic person on a panel about autism.
That's happening now more often than I care for, and let me tell you, that's one of the fastest ways to get on my bad side.
Today, it happened when I found out that Dr. Oz, Oprah's medicinal darling, was going to be hosting a special episode of his show on "what causes autism". Several guests were announced, and I did not recognize any autistic names on the list. I expressed my dissatisfaction with this in the comments section of the website it was being posted at, and someone actually had the nerve to suggest that it didn't matter that there were no autistic people (Actually, she said "those inflicted with it [autism]")on the show. Because we were so subjective, and it would be much better to have people who didn't have such a "personal" involvement in the issue. In the same breath, they lauded the decision to have the parent of an autistic child on the show. So much for personal involvement meaning you can't be factual about a subject.
Let me just say this right now. The national conversation about autism has been functioning radically outside of the usual disability norm by excluding people with the actual disability in the conversation. The phrase, "Nothing About Us Without Us" is not just a hollow slogan. It's meant to remind you that a conversation about disability can only go so far without the involvement of those with the disability.
If you still don't get it, if you still are thinking, "Well, isn't the 'cause' of autism, if there is one, best left up to doctors and health professionals?" I am going to remind you of something. Whatever people believe (facts aside) causes autism, it influences the way they interact with, perceive, and treat autistic people. One of the things which most greatly irks me about the anti-vaccination movement, with their language of "injured", "damaged", "sickened" and "inflicted", have this nasty habit of following that logic with treating autism like a degenerative disease. In fact, it isn't just the anti-vaxxers who are guilty of this. I've seen language of injury and sickness applied to autism in everything from The Skeptical Inquirer to the BBC. It's been compared to cancer, diabetes, AIDS, and malnutrition. The largest Autism-"Charity" *ahem* in the United States released a billboard comparing autism to car accidents.
I shouldn't have to say twice that language matters. The major difference between all these things and autism is that autism does not result in DEATH. It does not sap me of my strength or my health. Even if it did though, the pity-based attitude it inspires is still unacceptable. It reduces the possibility of autistic people being fully involved in society when they cannot shake off the label of "injured" and the treatment by neurotypicals which follows it.
These are things which I personally as an autistic person have experienced. The way a person perceives the "cause" of autism makes a huge difference in how we are socialized and how the world sees us. Don't you think that's kind of important to talk about in an age when the true cause, if any at all, of autism, remains a mystery?
I think it warrants an autistic person's opinion when talking about the issue. But, what do I know? I'm obviously too biased to know what I am talking about, and should sit back and let the nice mommies and daddies and doctors and scientists decide what's best for me. It's not like they're prejudiced in any way by their experiences and worldviews and their neurotypicality.

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