Don’t really have enough thoughts yet to make this into a full-fledged post, but I just had to share the link here. Blogger/author Stephanie Allen Crist (who’s commented here before, in fact!) just posted a wonderful blog post titled Offending Autism Speaks about why she’s boycotting a fiction anthology that’s sponsored by Autism Speaks. Do read it; I think it lays out the issues with that organization even better than I’ve done here.
If you’ve been reading my blog, you probably know my stance toward Autism Speaks by now. It’s an organization I’ve always had my share of issues with; see my past posts on the subject for some idea of why.
But this time, they’ve really outdone themselves.
Before I explain what they’ve done to make me say that, I have to provide a bit of background information. You see, back in early August, Autism Speaks sent out this press release encouraging people to submit videos of autistic individuals for use in an upcoming film project. This project had huge names behind it— most notably, award-winning movie director Alfonso Cuarón, the man behind both Children of Men and the third Harry Potter movie— and was to be titled “I Am Autism.” According to Autism Speaks co-founder Suzanne Wright, this project was intended to “shine a bright spotlight on autism,” and was to be unveiled at the United Nations World focus on Autism on September 22.
Seems pretty harmless, right? “I Am Autism.” Sounds like it might be some sort of “We Are The World”-type production, about how we’re all affected by autism in some way. And “shining a bright spotlight”? I actually had a small gleam of hope that Autism Speaks was finally shedding their doom-and-gloom message for something more positive.
Well…
I’m a day late with this, but I just can’t go without linking Cara from The Curvature‘s post “Things That Pain Me“. It’s about Yoko Ono’s partnership with Autism Speaks, and it links to my own post about said organization.
I’m glad to see that those of us on the autism spectrum aren’t the only ones who have issues with Autism Speaks’ tactics and approaches. Thanks, Cara, for getting this out to an even wider audience.
I was planning on posting about the ridiculously frustrating Larry King interview from last night with Jenny McCarthy, Jim Carrey, and J. B. Handley, but Joseph at Autism: Natural Variation beat me to it. So I’ll just let you read his post instead. It’s well worth it.
I will, however, comment on one particular line of the interview that made me just want to scream at my set for its utter wrongness (as taken from the official transcript):
HANDLEY: I want to talk about this issue of autism prevalence. It’s going to be shocking for parents to learn that the CDC and the AAP don’t actually acknowledge that there’s been a real rise in autism cases. Larry, the Department of Education in 1992, 16,000 kids were getting autism services. Today 225,000. That means in 1992, they were missing 93 percent of kids with autism. Where are all the adults with autism? They don’t exist.
Not only is that, as Joseph says, completely wrong, it’s also logically inconsistent with itself. Let’s see: If there were 16,000 kids getting autism services in 1992, those 16,000 kids would be… I don’t know, over age 18 now, since it’s been over 18 years since 1992 they were already in elementary school 17 years ago (I once again demonstrate that I’m horrible at arithmetic). Which, last time I checked, would make them adults.
So Handley must think that every one of those 16,000 individuals has either been cured or died, I guess. I’m curious as to which.
And that’s completely ignoring the issue of diagnostic substitution— I was undiagnosed in 1992 because Asperger’s and other high-functioning forms of autism just weren’t on people’s radar back then— which, as Joseph’s post points out (and which Dr. Max Wiznitzer also attempted to correct, but was cut off by the show ending), Handley also got wrong.
This seems to me to be one of those sorts of cases that Keunwoo Lee termed fractally wrong.
I’ve been thinking about the Tropic Thunder controversy that’s been brewing in the disability blogosphere. (Go follow that link if you haven’t already heard about this; I don’t see a need to reiterate the background story when it’s already been covered on plenty of other blogs.)
And as I thought about it, I noticed something odd. It wasn’t the oft-quoted dialogue about mental retardation that bothered me; sure, it’s offensive, but part of the whole point of the movie is that the characters are painfully insensitive. (I mean, come on, Downey’s character performs in blackface. You can’t say the characters are pinnacles of understanding.) The portrayal of “Simple Jack” in the film-within-a-film is a bit more unsettling, yet even that wouldn’t offend me if it were framed in a suitably satirical context pointing out just how chock full of stereotypes it was.
No, what’s nagging at me goes further than mere dialogue and character portrayals; it’s a matter of unfortunate implications. Now, to be fair, it could very well be that this is dealt with in a more balanced manner in the movie as a whole, so I’m withholding any final judgment for the time being; even still, the choices of what scenes were chosen for the trailers alone demonstrate a… rather unsettling bias.
As it turns out, those skeptical of the latest Autism Speaks controversy may have actually been right.
Zach Lassiter of AspieWeb has been in contact with Zazzle, and it’s been revealed that though there was an Autism Speaks complaint, it didn’t involve that particular shirt. In other words, this removal was just a Zazzle employee’s attempt to cover the company’s posterior, so to speak, despite what was claimed in earlier e-mails.
So— and this is probably one of the very few times I’ll ever say this— my apologies to Autism Speaks for claiming they did something that they didn’t.
(Now if only they would involve autistics in their organization and issue an apology for Alison Singer’s statements in Autism Every Day… those complaints, unfortunately, still stand.)
CORRECTION — 27 June 2008: The designer of the shirt described in this post has been in contact with Zazzle, and it turns out that the shirt was not directly removed because of an Autism Speaks complaint. Instead, it was in fact a proactive action taken by a Zazzle employee; see my post from tonight for further details. In the interest of correctness, I have struck out the portion of this post containing that accusation. The NT Speaks takedown, however, still does appear to be Autism Speaks’ doing, so that section of this post will remain intact.
(Cross-posted, in slightly modified form, from DailyKos.)
You might recall that a while back, I posted an entry criticizing some of the tactics of the autism charity Autism Speaks, which I originally posted at DailyKos.
Well, let’s all be thankful that they haven’t (yet) forced DailyKos to take that post down— or, worse yet, sent a cease-and-desist notice to the hosting provider for my personal blog— because of alleged intellectual property infringement. As utterly absurd as that may sound, it is precisely what they’ve done to not one but two autistic bloggers an autistic parodist who have has dared to criticize that organization.
So tomorrow’s the big Walk for Autism in Atlanta.
And this Georgian isn’t going.
I’ve already written in the past about Autism Speaks, the organization sponsoring this walk, in a good bit of depth, but I’ll just reiterate things in a shorter fashion to drive the point home:
I refuse to support an organization whose idea of treatment isn’t to try to find a way for autistics to function in a hostile world, but rather to “ultimately eradicate autism for the sake of future generations”, in the words of its founder.
I refuse to support an organization which talks all the time about the peril of autistic children, while seeming to forget about us autistic adults, or at most, giving us only a passing mention.
I refuse to support an organization which falsely appears to speak for autistics, when not a single person on the autistic spectrum can be found amongst its board of directors or anywhere else in its leadership.
I refuse to support an organization with a vice president who openly admits to having wanted to drive off a bridge with her autistic daughter in frustration, in front of that very daughter, while cameras are running to record the moment for posterity in a fund-raising documentary.
And in this repudiation, I’m not claiming autistics don’t need support, services, or any other help. Even though I’m on the higher-functioning end of the autism spectrum, I’ve had many moments where I could easily have used a helping hand…or several. I, too, go into meltdowns when I’m feeling stressed or overloaded; I, too, would very much benefit from accommodations that allowed me to actually meet halfway, rather than exerting even more effort than most people dream of just to maintain an appearance of normality.
But this help should be provided with respect. Respect for who we are, for the fact that autism is a pervasive developmental disorder and not just something that can be taken out of us like a tumor. Respect for the fact that our brains work differently, and that methods of teaching which may work perfectly well for a typical child (or adult!) may not work at all for us. Respect for the fact that we may still be aware of what’s going on around us, what’s being said about us, even when it doesn’t look like we understand a word.
Strangely enough, organizations for other neurological disorders—disorders with even more of a popular stigma than autism—get it. See, for instance, Joel Smith’s comparison of Autism Speaks’ rhetoric with that of the National Down Syndrome Society for just one example.
But unfortunately, even with plenty of protest by autistics all around the country, the world, and the Internet, Autism Speaks just doesn’t seem to grasp this idea.
And that is why I cannot honestly support them.
For those who haven’t already heard via other blogs about the subpoena that’s been sent to autism blogger Kathleen Seidel, please, do yourself a favor and read her post on it.
Seriously, this has practically left me speechless at the moment. I’ll definitely be posting more on this later.
But for right now, I just want to touch on some of the aspects of this subpoena that I found most ridiculous:
[Note: This entry was originally posted at DailyKos; the original version of the post, with its comments, can be found here. I’m reposting it on my own blog, with some slight modifications so as to make it more timely and to reach an even wider audience.]
Imagine, if you will, that an organization existed by the name of “Womanhood Speaks,” which, on the surface, appeared to be in support of women’s rights.
Now imagine that the governing body of this organization only included members of the male gender, with not one female represented in its ranks. Imagine that its actual aim was to create a registry of all females and force them to become more masculine, completely disregarding the fact that a majority of females were perfectly content with their womanhood and even found it to be advantageous. Imagine that members of its leadership appeared on popular TV programs talking about the epidemic of womanhood and how it needed to be eradicated.
Doesn’t sound too appealing, does it?
This hypothetical situation may seem utterly absurd, but for one segment of the population— albeit a much smaller subset than that identifying as female*— it isn’t all too far from reality.
I’m speaking of autistics, and more specifically, of the organization known as “Autism Speaks.”
Powered by WordPress