Advocacy Guest Blog: Who Controls the Dialogue on Autism?
Shaun Bickley
Texas Advocates
December 16, 2014
Recently, I was asked to present a 3-minute plenary speech in front of an audience of 700 at The Arc National Convention in New Orleans. I knew it would be difficult, since I had 3 minutes to justify my right to exist.
That wasn’t the topic, of course—it was supposed to be about storytelling, specifically my story. But I was preceded on the stage by a statistic about the rise in the incidence of autism diagnosis.
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Experience tells us (us autistic people) that this rhetoric is not neutral. Organizations that supposedly represent us call us an epidemic, comparing us to cancer, AIDS, and childhood diabetes (and then act bewildered when we point out those are horrible diseases that kill people). I have seen presentations and seen academics funded on the premise that the average autistic child “costs” America tens of thousands of dollars as they move through school. They forget that every student costs money as they move through school, because we consider some students to be human beings and worth that investment. Autistic people are killed by caretakers and family members at an alarmingly high rate, and rarely face criminal prosecution. And yet the rhetoric around autism is focused on what’s wrong with us, not what’s wrong with the way we’re treated.
I don’t believe that that was the intention of anyone who asked me to participate, and it was suggested that I talk about how I “give back to the community”—and I think from the limits of a non-autistic (allistic) perspective maybe this was the best weapon they could arm me with to combat those fears. But a non-disabled person would never be asked to justify themselves with how they give back to the community—whether or not I do anything for the community I still earned the right to my education, and my life.
But these are the implicit messages I have to face when faced with an audience that may very well believe a cure for autism is the best thing that could possibly be done to us. After all, once the message is up there—autism diagnosis is on the rise!—I can hardly talk about how much I like cats, or trains, or how good I am a writer. The dialog, once again, has begun before we even get to the table.
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A better statistic for people: the current autism research agenda allocates $950 million dollars to autism research. Of this, less than 3% goes to research on services for autistic people (source). The vast majority goes to finding out why we exist and how others can stop us from existing. But what autistic people need, and want, is services and support, not fear and rejection.
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About Shaun
Shaun Bickley is an autistic person who got his start doing community organizing in 2008 (and is since a 2012 graduate of the Midwest Academy’s Organizing for Social Change). After a brief stint as the Houston Chapter Leader of the Autistic Self-Advocacy Network, he went to work for Texas Advocates in Austin doing training for others with I/DD across the state. He also serves on the state's Employment First Task Force. In what little of his time is not taken up by advocacy, he enjoys playing board games, taking trains, and consuming fictional media.
View Shaun's original plenary speech from The Arc's National Convention on YouTube or read a transcript.
