Thoughts on “awareness” for Autism Awareness Month

Awareness means different things to different people. As National Autism Awareness Month gets underway (I know, I’m a couple of days late), I’ve been trying to find out what exactly we are supposed to be raising awareness of. More specifically, I’m curious what the proclamation that created NAAM says is the purpose of raising awareness. Unfortunately, a Google search didn’t help me much (though I didn’t look to hard, I must admit). If anyone can point me to the official proclamation, I’d appreciate it.

In the meantime, I’d like to share some thoughts on awareness from Cal Montgomery. These are excerpts from a review she wrote of the DVD Autism is a World.

“Awareness” is a word that I heard frequently in conversations about Autism Is a World before anyone I knew had had a chance to see it. Awareness, of course, is a standard goal of almost every book, article, lecture, and documentary about disability: the intended audience is obviously nondisabled, is obviously curious about disability, and cannot be insulted by the suggestion that maybe they’re a bit voyeuristic. Nope, they just want to be aware, to understand, to become educated about the sort of people we are. Not the sort of things that are done to us, but the sort of people we are.

I tend not to cooperate in awareness efforts. I am tired of being what Jim Sinclair calls “a self-narrating zoo exhibit,” tired of being told by the neurotypical parents and teachers and professionals who deal with autistic people that my only value is as a sort of reference work they can use to help ensure that a couple of generations from now there is nobody like me on the planet.

But awareness is not necessarily a bad goal. When it’s done well it is a good way for people who know certain things to communicate them to people who, so far, don’t know those things.

If awareness was a goal of the filmmakers (and I believe that it was), they have succeeded. W.M “weeza002”, for example, writes in an Amazon review that “My future stepson is 23 and autistic, and has always been treated as a [4-year-old], but this show makes me question just how much is going on below the surface. I may just be an optimistic future stepmom, but the thought that there is potentially an intelligent man trapped in that body both scares and gives me hope,” directly echoing Sue Rubin’s contention that “nonverbal autistic people are intelligent” and demonstrating how that belief is relevant to her own life.

But at the same time that Autism Is a World is a step forward for Rubin, who does not agree with a very great deal that has been said about her, it’s also an attempt to say something about me with which I do not agree. Rubin’s experience of autism and her beliefs about what it is and what should be done about it are not even close to my own, and when she claims that this is what autism is rather than this is what my experience of autism is, I think she’s crossed a line that is well-trodden but, I think, still worth defending.

The rest of the review is also well worth reading.

What struck me while reading her review was her dislike at being the target of stereo-typing. Saying that “all autistics do …” is about as meaningless as saying “all black men can …” or “women can’t do….” Perhaps what we should be raising awareness of is not the fact that there are so many autistics, but focusing on the nature of autism and how autistics, like everyone else, have a place in the world.

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