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.
**********************
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
********************
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?
jEAn Kearns Miller
A Rough Mission Statement First, a preface Dancing Mind Press began when I, in concert with other women on the spectrum, especially contributing editors Ava Baker, Jane Meyerding, Daina Krumins & Sola Shelly, realized that the terms offered by one of the leading publishers of books about autism were unacceptable. I suppose this qualifies as "no guts, no glory" but the issue came down to whether we would be willing to do our "Elephant Man" side show for the P&Ps with the vain hope of eventually taking over the reins of public discourse on autism. WFAP? really does provides rich information on women on the autism spectrum but in the context of (1) our lives as whole people (2) who are making our way through a world driven by systems of social & cultural treachery. We have plenty to say! People who have happened upon the book have written fan letters claiming that it: * changed autistic women's lives, in its authenticity & resonance with their realty as autistics which makes them see they are not alone. * provided parents with a source of hope, not based on the possibility of a cure, but on crucial insight previously unavailable in the P&P model * gave readers with all sorts of brain differences a sense of belonging to a larger neurological world that can make meaningful coalition possible & exciting in its prospects * gave multidisciplinary scholars something richly generative to think & rhetoricize about. These needs are not being met in the larger book publishing industry. I dare to imagine that the presence of a fan base for the book such as I have encountered so far indicates the existence of many, many more who are highly receptive if not hungry for not only WFAP? but an array of works that will challenge, enlighten, move them. This in brief is my starting point. Dancing Mind Press seeks to publish * Insightful work by different-brained authors based on the whole person model and eschewing the medical one. Various genres. Though individual conditions (e.g., autism, AD/HD) are included works are not limited to any one condition. * Works placing brain atypicality in a public, cultural, Systematized context to include social justice, civil rights, discrimination & stigma. * Multidisciplinary writings that can generate new ideas and transform or kick start thinking. * Works that affirm a necessary connection to disability rights & disability studies. * Elucidating works about life with an inconspicuous disability by those experiencing it. * Elucidating works by & about persons who have been minorities of one, so as to inform a definition of the concept of multiplicity (as contrasted with diversity) to expand our notions of difference.
No comments:
Post a Comment