Autism Today sent out a mass email to recruit people to be part of a panel based on the premise of cure for autism. Do I want to be on their cure panel? I don't think so. Their email and my reply.
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Them:
Email subject: YOUR OPINION COUNTS THE MOST!
Hello!
As a valued friend of Autism Today, you can make a difference!By joining Find A Cure Panel for parents and caregivers of people with Autism, you will be empowered to share your opinions in vital research.What's more, for each survey you complete Autism Today will make a minimum donation of $10 directly to the KEEN Education Foundation on your behalf.Registering is fast, free, and your privacy is completely protected.
Click HERE to sign up now, and thank you for your continued support!Sincerely,Autism Todaynews@autismtoday.com2016 Sherwood Dr #3Sherwood Park, ABT8A3X3
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Me:
Autism Today:
Once again I am appalled at the way so-called pro-autism organizations are decidedly not pro-autistic. You are defining this panel around cure ideology which most autistic adults find at the very least frightening.
I am also diagnosed ADHD and I have to tell you how different the ADHD community is from yours. Take a look at CHADD, the major national ADHD organization (http://www.chadd.org). It is entirely inclusive. Not only are adult ADDers considered essential to any advocacy groups but many, many of the theorists, researchers, and prominent clinicians are ADDers themselves: Ned Hallowell, John Ratay, Sari Solden, and Terry Matlin, among others. Stephen Shore and Liane Holliday Willey are perhaps the only two invited to the ball of the "autism Community." Perhaps if we all could become cognitive psychologists we would have the kind of critical mass to change the discourse on autism. In the meantime we look on in dismay and fear, for ourselves and the youngsters who are deemed unacceptable as-is.
The ADHD inclusivity keeps the cure hysteria to a minimum because people such as those I've mentioned are far from interested in being cured. In fact, the only place for cure rhetoric in ADHD is in quack internet ads. There is a growing pride in what ADDers are capable of even with severe problems like the statistically significant correlation between ADHD and marriage failure, incarceration, accidental death, and employment instability (e.g., likelihood of being fired), and particular torments suffered by ADDer youngsters: bullying, punishment for misbehavior, severe underachievement.
I'm not entirely sure what accounts for the disenfranchisement of autistic adults or the semantic lunacy of an "autism community" hospitable to everone EXCEPT autistics, but my best guess is an entrenched cultural belief that popularity, or perhaps, likability is what defines a whole person, Willie Loman in overdrive. If one cannot be likable, he or she is fatally flawed. Or maybe the culprit is stigma, pure and simple. I think there may be other issues in the personal narratives of parents that will never be resolved as long as they can hope for a cure.
In the meantime what does Autism Today have to offer me? How can I be sure your organization won't militate against my needs and deepest hopes? In terms of your list memberships and magazine subscriptions, what's in it for me?
Showing posts with label bestiary neurotypicals. Show all posts
Showing posts with label bestiary neurotypicals. Show all posts
Friday, May 1, 2009
Tuesday, March 24, 2009
Bestiary #1: I Am a Shiny Beetle
I am a shiny beetle. They put me in museums stuck by pins. I strike terror in little kids’ hearts. Why? I am shiny. I am symmetrical. I have curved pincers—I guess that’s what they’re called—but Geezalmighty, I’ve got to have something to eat with. Will you allow me that? Or do I scare the Bejeezus out of you because you think I’ll bite? I’m not exactly one of those Amazonian ones that’s as big as a tortoise. And mostly I just eat garden stuff. But it’s true that once in a while, if I’m scared shitless, I can rear back and let out this gigantic hisssss! But who am I kidding? I weigh less than an ounce. You weigh over a hundred pounds. Step on me. Go on. Squish me like a bug. I’m dead. See. Guts all over the place—what little I have. And I scare you? Get real. But I do have a secret and I’m told secrets scare the piss out of you. It’s that you can’t see my face. I’m not even sure I have one the way you think of faces. My eyes are pin pricks and my mandibles are more like something out of John Deere than your mouth. I can’t grimace. Or grin. Or smirk or frown. Or express myself in any way you’d favor or even notice. You have no idea what I’m thinking and you can pretty well guess that I don’t take you seriously as a person. What squishes me could be a rock or a bag of groceries. What I perceive vaguely in the shadows could be a hand, a bird, or a scrap of paper. Life is pretty much reduced to physics for creatures like me and truth be told, you don’t and never will matter to me. If you threaten me I’ll hiss my genetically programmed, automatic, compulsory hiss and maybe I’ll scare you but it’s nothing personal. And maybe that’s what makes you crazy. Maybe if you figure you have a chance to charm, persuade, establish rapport—like you do with, say, a dog—I’ll make you feel good about yourself and your self-esteem won’t be lying in a heap. I don’t give you anything back for who you are, because I just don’t care. And that means I’d stomp on you if roles were reversed and maybe if you were a leaf I’d chomp into you without regard for your nice family, humanitarian impulses, and talent for…the flute. I am harmless and—HHHHSSSSSSS!—that’s what scares you to death. Am I right?
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