Things That Pain Me

by Cara on April 6, 2009

in disability, discrimination, feminism, media, pop culture, stereotypes

Seeing Yoko Ono appear on mainstream American television, appear not to discuss John Lennon but to talk about her own artwork, and even better being treated respectfully by the hosts of said television show . . . only to have her use that time to reinforce dangerous and pervasive myths about disability.  Indeed, knowing that she was likely only invited to be on that show to discuss her own artwork and is being treated with respect because she is reinforcing dangerous and pervasive myths about disability.

Check out the video below, in which Yoko Ono appears on the Today Show to discuss Promise Piece, a new work of art in the form of a giant puzzle.  The pieces will be auctioned off to benefit the organization Autism Speaks.  Even worse, the condition of purchasing a piece relies on the promise that all pieces will be returned to be put back together once a “cure” for autism is found.

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Now, there are many people who could be criticized for supporting Autism Speaks and organizations like it.  That commercial on VH1 starring Steven Tyler, Robert Plant, Tommy Lee, and a bunch of other rock stars from the 70s and 80s, imploring you to “put an end to autism,” has been driving me up a wall for months now.  There is also a boycott of Lindt Chocolate going on because of their support of Autism Speaks.

Indeed, I should have written posts criticizing those things.  And, you know, they also would have been easier to write.  I will admit with shame that I hesitated before writing this post.  The last thing this world needs is more people going after Yoko Ono, right?  But I also realized pretty quickly that once we start refusing to call out people who we like, people in fact who we love and greatly admire, what we’re doing can no longer in any respect be called “activism” or social justice work.

Now, this is the point at which a lot of you will be asking why I am upset.  What’s wrong with Autism Speaks?  A good charity, right?

Well, no.  As someone who does not have autism, I’m not the best person to explain what is wrong with the organization and their model of response to autism.  So here is some information from someone who can explain better than I can:

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 with two X chromosomes— it isn’t all too far from reality.

I’m speaking of autistics, and more specifically, of the organization known as “Autism Speaks.”

I highly, highly suggest that you go read that whole post.  Now.  I’ll wait.  You can also find more information about why Autism Speaks is bad news here.

All of this touches on numerous issues, the two most important from my (admittedly rather limited) view being that 1) Autism Speaks attempts to speak for people with autism, which is a horrible and condescending idea to begin with, but especially so when considering how spectacularly they fail, and 2) they argue that there is something “wrong” with having autism, and that autism is in fact something that requires a “cure,” when instead many people with autism do not want a cure or feel that there is in fact anything about autism that needs to be “cured,” and even those who ultimately do would probably like to be included in the process and would also like to be treated like people in the meantime.

Both points seem rather obvious once they’re laid out in front of you.  And both are reasons to oppose Autism Speaks and those organizations that work off of the same model.  The second is also why I have an issue with “Promise Piece” to begin with.  The real shame is that it’s such an utterly beautiful piece of work, too.  If only it was to symbolize the need for something different, something that is not a cure for autism.  If only the fact that the puzzle is not whole was a metaphor for something that didn’t degrade the existence of certain people.  If only it was to symbolize the need for world peace, or the need to put an end to violence against women, or many other causes where the world is indeed lacking something.  Sadly, that’s not the case.

But seeing Yoko on the Today Show, and watching this piece of art get fawned over, when so much else of her work is utterly ignored or just plain mocked, brought home something that was in many other ways already bleedingly obvious. It brought home the fact people really, really buy into this idea that autism needs a cure, and that attempting to find one, and attempting to do work for the “benefit” of autistic people without their input, is a noble cause. And that’s an idea that needs to be eradicated.

Two organizations which I’m currently aware of that are already doing this work are the Autistic Self-Advocacy Network and the Autism Acceptance Project. They work within a social justice model that promotes services for people with autism while recognizing the right of autistic people to self-determination. And even better, they are run by and/or with autistic people.

These are the kinds of organizations that we need to be supporting.  And those of us who are not autistic need to be educating ourselves, and using what knowledge we do have to call out other people, not out of a desire to attack them but out of desires both to hold them to their own standards and to end all forms of oppression.  Even when they are people who we deeply respect and love.

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{ 18 comments }

1 Anna April 6, 2009 at 10:14 am

Autism Speaks pains me, and Autism is not an immediate part of my life. It reminds me so much of things like Jerry’s Kids, where the whole idea is to feel pity for the poor wee cripples and their horrible life. Woe, if only there was a way to prevent anyone from being born like this. THINK OF THE CHILDREN! (and never of the adults – they don’t exist, right?)

2 codeman38 April 6, 2009 at 10:15 am

Great post, and thanks for including the link to my own post; glad to see it’s getting out there.

3 viceabbess April 6, 2009 at 10:31 am

wow. i worked in mr/dd for five years, have read some of temple grandin’s books, and never before consisdered this perspective in depth. thanks.

4 G.R. Crisp April 6, 2009 at 12:47 pm

I’m torn.

I’m the mother of an autistic child, who is so severely hampered by issues caused by her autism (she’s utterly non-verbal) that she may never have a life where she can determine her own path.

On the one hand, I want her to have the same options I did when I was her age, with the world being an incredibly juicy fruit waiting for me to pluck it.

On the other hand, I want her to have self-determination, and until she can express her choices, I don’t feel comfortable making that sort of choice for her.

Besides that, the Autism Speaks group has always rankled me terribly, and the analogy provided here illustrates part of the reason why.

Thanks, Cara. As always.

5 Donna April 6, 2009 at 4:34 pm

Thanks for this, Cara. I really don’t understand how they can have an advocacy group without any autistic people working within that group. My son is autistic and he can and does speak for himself. Autism speaks is a group for medical personnel, parents, and care givers who view autistic people as burdens instead of human beings, that’s why they must be eradicated. It’s shameful.

6 EKSwitaj April 6, 2009 at 8:09 pm

This pains me, too. I’m an aspie, and I’ve long admired Yoko Ono’s art.

7 Annie April 6, 2009 at 11:10 pm

Donna, they don’t have any autistic people working within the group? I didn’t know that, how strange. And how sad that they view autistic people as burdens.

8 Angiportus April 7, 2009 at 8:39 am

I just signed off on the Lindt boycott. But I think that those of you who are fans of Ono should get in touch with her, and call her out on it personally, as fans.
Thanks for alerting me to this problem.

9 Cara April 7, 2009 at 9:05 am

Thanks Angiportus. I didn’t include it in the post, but I did send her a detailed email with links a few weeks prior to writing this post. I also sent it to her webmaster, who I’ve had communications before, and asked him to make sure that she got it. He thanked me for it, but I don’t know if she saw it.

Even if she did see it, I can’t say that I was exactly expecting her to change her mind on the basis of what I said. And she may have already had all of these appearances and things she’s doing booked at the time. But after seeing more and more of this after a couple of weeks, I decided that it was time for a public post.

But yes, it can’t hurt at least to send more emails. I still love Yoko deeply of course, and have great faith in her, and just have to believe that she wouldn’t intentionally want to hurt anyone. And a couple of years ago, I wouldn’t have known what was wrong with “fighting for a cure” either. Knowing that her actions are resulting in pain, to those who are her fans no less, could in fact make a difference. I don’t know. Her website is imaginepeace.com and there are a few email addresses on the site.

10 Maddy April 7, 2009 at 8:12 pm

Newbie visiting via ‘normal is over-rated.’ It is a shame that Yoko is connected but sadly she seems to have been hoodwinked like so many others.
BEst wishes

11 abfh April 7, 2009 at 10:13 pm

Autism Speaks actually has used the word “eradicate” in referring to autistic people. I’m posting only a partial link because I never give active links to hate speech:

parade.com/articles/editions/2008/edition_01-27-2008/Autism_Changes_Everything

12 Phil Schwarz April 7, 2009 at 11:31 pm

A propos your analogy to a fictitious “Womanhood Speaks” — I explain the state of autism politics to friends in the LGBT community similarly, like this:

Imagine it’s before 1973 (the year that homosexuality was removed from the DSM)… and that the organization dealing with homosexuality with the biggest mindshare, political clout, and financial resources is NARTH (an organization (a real one, alas) that aims to “cure” people of homosexuality).

13 Meowser April 8, 2009 at 1:04 am

Oh gods, do NOT get me started. The VH1 ad? I’ll bet right now those guys all know and have worked with aspie musicians. Maybe some of them even ARE aspie musicians, who knows. AS claims they “don’t mean us” (aspies) when they talk about body-snatching, er, I mean curing autistic brains, but the fact is, they use Asperger’s and PDD-NOS to pad their numbers, so I don’t buy for a minute that they don’t mean us. Not that it would be okay if they didn’t.

Possibly Yoko doesn’t have any awareness of neurodiversity yet, and doesn’t have any idea what the curebies are really up to and why they are GETTING IN THE DAMN WAY of people with autism, not helping them. (Never trust an organization with “autism” in the title that consists almost entirely of neurotypical people!) It sounds like it would be right up her alley, though, if she did know about it.

14 Ryan April 9, 2009 at 3:50 am

You know, a lot of this stuff where people with AS or HFA feel entitled or obligated to speek for people with autism really bothers me because there are light years of difference in functionality on the autistic spectrum.

Nobody (read: experts) really knows if autism shares causal mechanisms with other autism spectrum disorders. People are diagnosed based purely on behavioral symptoms and what is clear is that people with diagnosis of high functioning autism or AS are incredibly less impaired than those with an autism diagnosis.

15 Meowser April 10, 2009 at 12:29 am

Isn’t Ryan’s comment a curebie bingo square? “You people who have language facility don’t have REAL autism, so shut up.”

Ryan, all I’m gonna say is this: look at the DSM-TR-IV diagnosis definitions for “autistic disorder” and “Asperger’s disorder,” and tell me there isn’t a whole buttload of overlap. And then consider the fact that almost everyone with any form of ASD attains some kind of communication ability by adulthood. “Not speaking” is only ONE possible presentation for autism (read that diagnostic criteria again), and is often a temporary phase anyway.

And “functionality” covers a very, very broad range of communication, activity and self-care skills. It’s never true that “anyone who can’t do X can never or almost never do Y either,” or “anyone who CAN do X can always or almost always also do Y,” any more than it is for neurotypical people.

And not everyone who’s anti-curebie-ism is AS/HFA as clinically defined, believe me. Not even close.

16 Ryan April 10, 2009 at 1:17 am

Isn’t Ryan’s comment a curebie bingo square? “You people who have language facility don’t have REAL autism, so shut up.”

I’m not suggesting that anybody shut up. What I’m suggesting is that AS and HFA are practically, functionally, and perhaps medically very different from autism. So basically I think people with other ASDs should speak for themselves and not everybody with an ASD.

17 Anna April 10, 2009 at 8:06 am

I’m assuming that HFA = High Functioning Autism?

18 Casdok April 25, 2009 at 3:11 pm

It pains me to. Good post.

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