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Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by mjc Monday, December 29 @ 20:43:23 EST | From Michael John Carley:
I’m responding to abfh’s post somewhat against my will. Were it just a blog entry, there’d probably be no call for me to do so. But since the post was given front-page status by Wrongplanet, others are pushing me to write back. I don’t like it. I understand that folks like abfh are a part of my job; a job I chose, knowing full well what I was getting into when I took my position at GRASP, so you get used to the negative post or two. But I understand the concerns of those who have asked me to respond, so I respectfully acquiesce to their concerns.
There are a lot of reasons why I don’t write back to stuff like this. It’s not just because I don’t want to dignify the out-of-this-universe claims being made, nor is it simply because I don’t want to engage in a dialogue with someone whom I don’t believe has the ability to dialogue.
I don’t like responding because I don’t want to be the person to make folks like abfh see how unable they are to be a constructive part of the figurative battles we’re all waging. I don’t particularly want her to know how she breaks my heart in how well she works for the opposition. I don’t want her to know how unable she is at reading what she says she’s read, whether it’s my articles, books, or anyone else’s (and that’s taking her at her word that she actually read them). I don’t want her to know that what drives her is not the pride she states she feels for her diagnosis, but instead is the not-so-worthy anger, anxiety, or depression that so tragically accompanies life lived in the behavioral minority inside a world that doesn’t fully understand us. I don’t want her to know how almost all of us struggle with these byproducts, but that most of us don’t give in to them to the degree that she does. I don’t particularly want to be the one to point out how unhappy she was long before Autism Speaks began. I don’t want her to know that when we finally get rid of the tragic events in our lives that cause that anger, anxiety, and depression; that we may very well appear to be a completely different-looking collective; one where no one resembles abfh.
There is no conspiracy or secret agreement between GRASP and Autism Speaks. There is animosity towards us by a select few posters because we believe in engaging Autism Speaks in order to change them. The middle finger route from across the street wouldn’t work if we were experiencing it. It probably won’t work with them. Folks should feel to disagree with this question of “how” change will come to Autism Speaks, but to suggest the secret payments or agreements is just sad.
My relationship with Alison Tepper-Singer is not one that is rooted in ideological agreement whatsoever. But it is rooted in personal trust. I have never held mirrored belief systems as the value of another person. abfh and I have infinitely similar goals in mind, but on a personal level? I trust Alison. Despite what she did in that movie (which is another debate), the rapport so far has been of value to all of us. This is just me, but . . . I would rather spend a month with someone holding polar opposite views—whom I felt I could trust—than one day with someone whose belief systems ran parallel to mine, whom I couldn’t (especially if it’s a work-related issue; where something needs to get done). Call me old-fashioned, but character does count to me.
The quote for my book that abfh was incensed by, is perfect. It shows respect without claiming any agreement for my views. I’m proud to have it. Remember, I’m an ex minor-league diplomat, and change will not come about between adversaries until first some common ground centered around agreements can be found. They are too big, and too loaded, to be “brought down” by internet posts. So yes, we talk with them, compromising on none of the disagreements, but addressing them respectfully given that we don’t believe they’ll change any other way, and that we wouldn't want to operate any other way. I don’t think anything has contributed more towards their decreased use of the word “cure” than those Articles of Understanding that abfh (and a couple of others, admittedly) so resents, and I invite wrongplanet’s members to read them (they’re on GRASP's website) if you have any doubts about this.
I don’t want abfh to see how identical the goals of GRASP and abfh really are, but that over that difference of opinion in how we’ll achieve those goals, that she spirals into the type of comic conspiracy theorist that is far more ammunition than it is opposition for those who use the word “cure.” I may not be on Autism Speaks’ payroll, but in the grand scheme of things, she deserves to be, as do others who publicly state similar hatred towards GRASP’s policies of engaging ideological opposites (disagreement is one thing; hatred another). I don’t want her to know how terribly she makes people on the spectrum look, and on this I take some solace because based on what I’ve seen, she may never understand this.
I don’t want to be the one who shows her when she’s being simply a bully, or that if there were any questions about what GRASP does, that she could’ve contacted us. We’re not liars, and we’re very proud of what we do so we’d answer her honestly. My email address is also fairly well known. I don’t want her to know how proud I am of GRASP’s policies that are more about community than free speech, especially if free speech means getting to name-call other people on the spectrum—and that how within those rules, she’d never fit in.
And I didn’t want the spectrumite world to know how disappointed I am in Wrongplanet.net for giving her posting the validity of front-page treatment. Wrongplanet.net and GRASP have a long-standing relationship full of gorgeous gestures in both directions, but such a decision on wrongplanet’s part was a conscious choice, and one that I am confused by. I don’t expect abfh to know any better. But I did expect wrongplanet to. There’s a great difference between an informed debate, and an uninformed blast of misdirected anger.
Change will come from all sides; from bloggers, from GRASP-types—the grass roots cyberspace portions and the “suit sits at the table” portions working hard, if not in tandem. But while bloggers have demonstrated great ability at dissecting the issues and getting to the roots of a lot of the problems facing us, they have shown disappointing ability or willingness to be a part of fixing things in a way that isn’t fantasy, or isn’t solely based on outside commentary. Again, if someone slandered you (this is me directly talking to the reader here), would you just do what they tell you? You might fight back, or you might walk away, but I don’t think anyone’s going to bend over and do whatever the name-caller tells you to do. Nobody would.
I was raised on a great principle that carries great weight herein: That it is not a sin to be ignorant (perhaps Autism Speaks), and neither is it a sin to be frustrated (perhaps us), but it is a sin to be a jerk. One thing abfh and I probably agree on is that being on the spectrum does NOT mean you don’t have it in you to be a suspect human being. In response to my response, she’ll likely wonder “Hey, he doesn’t know me . . .” and that would be a sad, poetic justice.
There is one thing I do want abfh to know, however. Whether her use of the word “bitch” is meant as a double-entendre, or some wordplay meant to turn an insult into an empowering source of pride; I do not believe that anyone can be much of an advocate for themselves, or for others, when they literally call themselves a “bitch.” Internally, and over the long haul, I don’t see how that can work. She’s unhappy, and maybe there will come a day in which this will change. I hope so.
Sincerely sorry to respond,
Michael John Carley
Executive Director,
GRASP
And author, “Asperger’s From the Inside-Out,” and the upcoming “Cures, Vaccines, Research, and the Promise of Alarmist Rhetoric: Autism Politics 101.”
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