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Autistics Speak

by Cal Montgomery

Autism Speaks showed up on my television this week and last, as one of the two charities featured on "The Apprentice", and Randal Pinkett, who ran a charity event for the group, won the job working for Donald Trump.

"The Apprentice" is a reality game show which unabashedly celebrates capitalism and occasionally comes down on the side of charity as well. It's basically a business version of "Survivor" in which every episode we see teams compete in some sort of contest while promoting a specific product, brand, or store. Each week the team that wins gets some sort of reward and the team that loses faces Donald Trump and he picks one (or two, or four) of them to send home.

When there are two players left -- this season those players are Randal Pinkett and Rebecca Jarvis handling an event for the Elizabeth Glaser Pediatric AIDS Foundation-- they lead teams of previously-eliminated contestants as they each step in at the eleventh hour to "run" a major event. Then Trump dithers for awhile on his live finale before naming one The Apprentice.

In case you keep track of these things, over the last two weeks on Mark Burnett's reality shows I discovered -- and I wasn't even looking for mistakes -- that the captioner misspelled a contestant's name on CBS's "The Amazing Race." They misspelled Elizabeth Glaser's name on NBC's "The Apprentice"; and on Martha Stewart's version of "The Apprentice" (also on NBC) they gave the name of the product-placed airline Song as "Thong" -- which doesn't seem to quite give the same impression of the brand that I think your average bored horny male hearie got. So let me just admit up front that I'm not exactly the viewer they're trying to reach.

It's Tiny Tim time again, and it's not as if I'm running around expecting to like the stereotypes of disability that I see on TV or the stereotypes of disability I run into every day. Maybe that's why, despite the fact that public images of autism are never really anything but infuriating, I turned off the TV last Thursday more pissed off than I had been when I turned it on. That and the fact that I'd been rooting for Randal for awhile, and suddenly I found myself hoping he'd fail miserably.

This year I have a puppy, so I can't hide out in my apartment for more than a few hours at a time, and people who would ordinarily not rub my face in their prejudices decide that they can demand that I tell them what breed he is and then get angry at me for wasting their time when it turns out that I don't speak, that they can grab my dog without ever acknowledging my presence, and that they can question my fitness to have him at all based solely on the way that I look.

The first time Nate and I went to the vet, the doctor handed me a bunch of advertisements for various dog-related products and services and then went and looked up the name of a group that can train him to be a therapy dog.

One couple we met on Michigan Avenue decided that if I were so rude as to write the answer to their question down on a 3 X 5 index card, they should just take Nate home with them.

Yesterday in the elevator a woman put her hand on my shoulder (oww!) and told me very slowly, with very careful enunciation, and entirely monosyllabically what she thought I was doing wrong with him. Today she followed up in exactly the same manner. I'm certain the little story about these encounters that she's telling herself in her head is nothing like the little story in my head.

This, of course, is all on top of the usual stuff that I lived with before Nate. I am so sick of people explaining very basic things to me: go in the elevator and you'll end up on a different floor; Chicago is cold in the wintertime; if I go outside when it's raining I run the risk of getting wet. Gee, really?

But I digress. I'm here to discuss Autism Speaks, and the issue of portrayals of autism.

I talked this week with a woman I'll call Kim. Kim is the anonymous creator of Getting the Truth Out, a website that's meant to make you think about the way autistic people are portrayed by groups like Autism Speaks -- it was made directly in response to the Autism Society of America's new branding effort. The ASA calls itself the "voice of autism" in order to attract more money. Part of the branding effort is the Getting the Word Out website.

Getting the Truth Out is hosted by autistics.org which now calls itself the "real voice of autism." A huge difference between the Autism Society of America (ASA) and autistics.org is that the former insists that autistic people cannot speak for themselves and therefore family members and professionals need to do it for them, while autistics.org is a site created by and showcasing the writing of autistic people.

One of the things Kim says Getting the Truth Out was designed to do is to show how images and descriptions of autistic people serve the needs of the people who are providing them. "If my parents felt like it they could describe me exactly as I'm described in the first part of the site" -- which is designed to seem very much like the sort of "autism awareness" presentations it seeks to undermine -- "and then claim that other autistic people, the ones who don't want to be treated in various ways I disagree with, are not like that. I wanted to blow as much of that apart as I could and show that it's often only a matter of how we're described and who is doing the describing, not how we are, and how these ways of describing us are used to maintain power over all of our lives."

Almost invariably in black and white, the visual image used in charity advertisements is frequently one of dependency, strangeness, isolation. The written text, however, often offers "objective, scientific" facts about the disability and suggests the possibility of its being cured. Thus while the text is offering a rational way of understanding and lessening fear of the disability, the image above it is busy inculcating both fear and loathing. Recently some charity advertising has begun to focus on "attitudes." Hevey writes, "'Attitude change' is the charities' dream of social change without political action.... [It] asks disabled and non-disabled people to disengage from the physical world of inaccessible construction and enter a mapless world of hope." (From "Toward a Theory of Radical Disability Photography." by Anne Finger, in The Ragged Edge anthology)

Take a look at the Autism Speaks website. Let's start with the prominent graphic of a piece of a jigsaw puzzle. That same logo was all over Randal's event. It's meant to suggest that autism is a puzzle, or that autistics are. Very often in "autism awareness" materials graphics show the face of an autistic child (or a neurotypical model portraying an autistic child) with one or more puzzle-piece shapes cut out.

Now go click on some of the "Meet So-and-So" pictures. You get little movies with voiceovers about shoe-tying being "a meaningful achievement" and children struggling to do things most kids their age can do.

And now go to the November 30, 2005 press release in which Mark Roithmayr, president of Autism Speaks, fills us in that "Autism Speaks and the National Alliance for Autism Research have signed a memorandum of understanding to combine operations and bring together two of the leading organizations engaged in the battle against autism."

Sound familiar?

Kim says -- and this resonates with me, because this is what I thought when I first saw Getting the Truth Out -- "I seem to be writing about autism and I seem to be writing about my life but I'm actually writing about how power is used and who has it and disability in general and people in general and all sorts of other generalities, just in the context of something very specific-looking." She brings up Voice of the Retarded and the Muscular Dystrophy Association having done similar campaigns; she brings up disability rights and human rights and ethics in general; she's not talking just about herself, or just about people who are "like her"; she's talking about anyone whom other people have the power to define.

Of course, a great many people who are critical of Jerry Lewis's promoting the idea that people with mobility impairments are helpless children in need of cures have no problem with the parallel idea that autistic people are helpless children ("mentally" if not chronologically) in need of cures, an idea Randal promoted actively in a speech he gave at his event, only a short time after he'd first encountered Autism Speaks.

More than one ADAPT member has approached me about the latest autism cure and what it can do for me. Among people less experienced in thinking critically about disability, which probably includes everyone affiliated with "The Apprentice", the assumptions most people have about autism may be even more deeply ingrained.

Many autistic people completely reject the idea that we are helpless and in need of cure, just as many people with mobility impairments reject parallel ideas about them. Moreover, autistic children, as Kim points out on Getting the Truth Out, become autistic adults and continue with their lives. Many autistic people accept the stereotypes; so do many people with mobility impairments. Anyone remember Christopher Reeve?

"With Getting the Truth Out," says Kim, "I wanted to write a site that started out like the typical descriptions people use to raise money, along with the typical photographs, and all that kind of thing, so that the people who would normally read that sort of thing would take interest and read further. And then to show what is really behind that stuff -- not just 'behind the autistic appearance' or whatever, but how people use these images of us, how they stick their own captions on them, and how they pretend to know better and all that, when all of it is a way of getting money, power, recognition, etc, without truly making anything any better for us."

There are certain facts about people labeled autistic on which we can probably agree. We look odd to neurotypical people. We answer certain questions in ways that other people find strange ("Do you remember your family's birthdays?" a shrink once asked me, and then told me that I should have said "I don't send them cards" instead of "April 24, May 16, July 12, September 7"). Some of us never speak. Some of us begin to speak and then stop. Some of us speak about things or in ways that our parents find embarrassing.

But that we "have a condition" and especially that that condition is "a tragedy"? There's significant disagreement over the first, and the second is a straight-up value judgment.

What we "need"? We are in strong disagreement with one another and with the people who love us and the professionals who make their livings dealing with us in one way or another.

What an individual small autistic child without a communication system would like to tell us if he or she could speak? I doubt any small child wants to regale you with statistics, although someone at Autism Speaks seems to think several of them do.

I'm the last person to start a "No representation without communication" movement. But I've known enough people who have opposed what nondisabled people have to say on their behalf, and enough people who have opposed what more privileged disabled people have to say on their behalf, to be wary of anyone -- anyone -- who claims the right to speak on behalf of others chosen in part because of their presumed inability to consent. Especially when the constituency has to be repeatedly gerrymandered to exclude dissenters. Especially when the constituency's reported interests strongly resemble what's good for the spokesperson.

And these campaigns are designed to get you to send money.

One of Kim's biggest complaints about the Getting the Word Out site is that while ASA acknowledges that some autistic people have the ability and the right to speak for themselves, the organization believes it has the right to disregard what those people have to say when it "speaks for" the people it determines are unable to communicate in a meaningful way. "If you have no means of communication that most people would understand, then by default the ASA knows what's best for you." Moreover, it insists that it is not engaging in political speech: it's merely relaying the facts.

A scene from the first half of "The Apprentice's" final fourth-season task: Randal and his team are in a party store buying little plastic megaphones to give a clear metaphor for Autism Speaks' central image: autistic people cannot speak, and therefore a charity is needed to speak for us.

Kim tells me about the pictures at Getting the Word Out. "There's a sense that merely looking a certain way is awful and tragic and so forth, and that there's something really wrong with the way autistic people look." Even some autistic people feel that way. "There are plenty of autistic people who get very angry whenever autistic people who look a certain way are portrayed in the media at all."

There's a tendency, she says, to view Asperger's syndrome or what is called "high-functioning autism" as pure autism, and to treat "low-functioning" people or people with other labels besides autism or Asperger's syndrome as if they are autistic and also have some other problem which needs to be cured.

Sue Rubin, Kim tells me some of these people say -- the same people who say Kim shouldn't have made Getting the Truth Out -- shouldn't have made the documentary Autism Is a World because she has Noonan's syndrome.

"Politically, this shouldn't matter," Kim says -- she believes, as I do, that the whole high-functioning/low-functioning divide is meaningless -- "and even medically, it's estimated that 40 percent of autistic people have associated genetic conditions of this sort." That's a lot of autistic people who shouldn't be discussing their experience of themselves and the world.

Meanwhile, Kim says, some autism professionals and family members of autistic people try to discredit autistic people who see no need for cures by suggesting that they don't have any of the various diagnosable syndromes that autistic people often have. So one of the cornerstones of Getting the Truth Out was pictures of an autistic adult with an accompanying genetic condition -- and some viewers have identified the precise one: "looking autistic."

Definitely looking autistic: one parent went so far as to say "I will never apologize for not wanting my daughter to be like that woman. Autism of that profundity is a tragedy ... not an alternative lifestyle. It's a disorder that can be avoided."

Kim says, "So there were people who read the whole site, including what I thought about being viewed this way, and just went, 'This person must lead a horrible life, and I don't want my child to be like this person at all.'"

Years ago, there was an episode of The West Wing, which was getting a lot of press for how it showed "both" sides of political issues at the time, which pretty much presented the Cure Autism Now position verbatim and had nothing about any other side to the issue.

If the personal-tragedy view of disability in general is entrenched in the public imagination, the personal-tragedy view of autism in particular is even more so. Some people, even some people who use their imaginations every time they go to work, just cannot imagine any other way to think.

Even with some of the responses listed above, Getting the Truth Out is doing what Kim wants it to do with at least some people. "Many people have said that they're rethinking the images of autistic people, or of disability, or something else like that, that they had in their heads. Some of them had had no exposure to autism before except the Getting the Word Out type stuff they saw in the media. Some of them were autistic or parents of autistic people but had mainly encountered portrayals like Getting the Word Out before."

And then "Some people ... have done something very interesting." At this point Kim brings up Critic of the Dawn -- a piece of mine that Ragged Edge published awhile back. In "Critic" I introduced two imaginary people, Bruce and Mary, to represent the major ways that people react to me:

One I think of as an uncle. A descendant of Carrie Buck, of the Jukes and the Kallikaks, a cousin to the Rain Man and the wild children of the forests. You've seen him rocking in the corner, headbanging. He cannot speak and, people assume, has nothing to say. Sometimes he is a cute, incomprehensible child; sometimes a terrifying, incomprehensible adult. He is usually uncomprehending but sometimes manipulative; usually repellent but sometimes seductive. Violence swirls around him: sometimes he is a target, sometimes a perpetrator, sometimes both. He is an enigma, interpreted by others: he cannot define himself. He embodies the stereotypes, the paradigms of cognitive impairment, of my own particular set of labels. He's no different from me -- but he is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no resemblance. Bruce, I call him in intimate moments, after a caricature I once saw on television.

The other I think of as a sister. A shadow twin. The daughter my parents wanted in my place, pretended they had. The sister my flesh-and-blood sister wished for. Me, but with impairment denied, defused, removed. Me, but with grace, stamina, social skills. She speaks for herself -- then again, she doesn't have to. She's no different from me -- but she is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no hint of resemblance. Mary, I call her, after the aunt whose other name I was given.

"In person," Kim tells me, "I'm generally regarded as Bruce. In print, I'm generally regarded as Mary."

When she made the site, she tells me, she put pictures of herself up next to words she had written. Many people decided that a Bruce-like person was in the pictures, and a Mary-like person was using those pictures to make a point. "In this scenario, I am being exploited by ... uh ... me. Some people say that other people (possibly Laura Tisoncik, the founder of autistics.org) wrote the text, some people say that a group of people wrote the text, and some people say that I was only capable of writing the shorter sentences but not the longer paragraphs." In fact, the piece is entirely her work.

"The rationale behind that is that people who look like me can't possibly write so someone had to write it for me."

In other words, "Some people are not relinquishing those two stereotypes, but splitting the site into both of them in their perceptions. Then there are of course the people who like it but miss the point and think it's a special inspirational story." Those people, she said, think she should answer any questions they send her, no matter how personal. It's a variation on the type who "believe there is a certain role for people like me, and that if I do not play it, I am not fulfilling my obligations to the world." In this case, the obligation is "to be a never-ending autism textbook and walking autiebiography."

Which gets us to why Getting the Truth Out is anonymous. Why didn't Kim sign it with her real name? Especially since so many of us look at it and wish we could make something that good?

She tells me the main reason, bringing up Burton Blatt's and Fred Kaplan's photo essay Christmas in Purgatory and alluding to Geraldo Rivera's Willowbrook coverage. "In 'Christmas in Purgatory' they did not reveal the identities of the specific institutions because it would then be too easy to dismiss the conditions in them as being unique to those places." This, of course, is exactly what happened with Willowbrook. It was seen as a single, if huge, problem -- which is almost inevitable when a local institution is dealt with on a local news program as was the case with Rivera's coverage. "There's a sense in which I similarly did not want Getting the Truth Out to be read as the individual, emotional, inspirational, or whatever, story of one person in a totally unique situation. I wanted people to question what they thought when they looked at anyone, not just me."

Which is, of course, a consistent problem for people writing about disability today. Apart from those who have a background in the tradition of the British social modelers (which you can learn more about at the Disability Archive UK), no one I know even has a language to discuss disability as a large-scale social pattern of correctable injustice distinct from impairment as a trait of individuals.

The materials at the Disability Archive UK, at www.leeds.ac.uk/disability-studies/archiveuk/index.html, to which I have linked in referring to the British social modelers, are in PDF format. The menus are not. The best way I've found to get this stuff into a screenreader-friendly format is to identify the author and title you want and then go to google.com and hit "search." When the results come back, find the one from this site and select the "View as HTML" option that google provides.

American culture right now individualizes everything about disabled people, whether we like it or not. Our attempts at social commentary -- like Getting the Truth Out -- all run the risk of being treated as personal musings from one particular individual. People who read much of what I have written will note that for a long time I used my name and sometimes my location and email address but refused to give out diagnostic information; Kim, whose entire project is based on certain kinds of diagnostic information, refuses to give out personal information.

So here we are at the end of another season of "The Apprentice"; having heard Autism Speaks' all-too-familiar "information" about autism disseminated to every community with an NBC affiliate; knowing full well that because this "information" fits in well with the standard prejudices, it is unlikely to be scrutinized carefully at all; and Randal's win, for which I was rooting just two weeks ago, is suddenly not the point of the finale at all.

Cal Montgomery writes frequently for Ragged Edge. Read her article, A Hard Look at Invisible Disability.


Just a brief comment. Kudos for your reading of The Apprentice. I've already posted a lengthy comment at The Apprentice Blog ( http://donaldtrump.trumpuniversity.com/default.asp?item=118339 ) but I think it bears repeating. Playing the "pity for profit" card is almost as reprehensible as propagating half truths and misrepresntations about any disability. The fact that Randal won after his overwhelmingly shoddy performance on this particular task is truly disheartening, as well as a reminder of what a capitalistically distorted world we live in.

Another great article. Thanks also for the link to the Leeds resource.

I have a 7 year old son with autism. He doesn't speak often. Getting the Truth Out was mind blowing. It changed the way I looked at him. It changed the way I feel about how others look at him. I accept him the way he is right now. I no longer feel he needs a cure. Who the hell am I to judge his quality of life? He is his own person. Everyone should respect that, especially his own mother.

so yes... this is all the things I want to say and would have others know, understand and appreciate. I know I don't fit the mold termed 'beautiful' but that's because the mould is too limiting and stereotypical. Eyes are beginning to see the real issues.. we must make sure that they do. The future for all of us depends upon our not being recognised.... no-way! Communication is so much more than words... the mould needs to change.

In the beginning, autistics had no voice

Then behavioural science put a label on them

The autistics still had no voice

Then their mothers were blamed

The autistics still had no voice

Then science freed the mothers from blame

The autistics still had no voice

Then the more privileged wrote books

The autistics still had no voice

Then the media took interest in the books

The autistics still had no voice

Then cinema made a few movies praising society for not using the gas chambers.

The autistics still had no voice

Then the organisations began to grow

The autistics still had no voice

The organisations were only interested in published observers, parents and snake oil

The autistics still had no voice

Then behavoural science found a niche

The autistics still had no voice

Then the theraputic community found profiteering through excessive diagnosis

The autistics still had no voice

Then any geek, oddball or eceentric but normal person could feel justified for being different

The autistics still had no voice

Then the internet came along

The austistics still had no voice

The justified geeks turned them away as curebies

The autistics still had no voice

Their self-affirmation cause was plagiarised by the geeks

In the end, the autistics still had no voice.

B - 12-24-05

So are we all "justified geeks" to you, Brian, or what? Not sure what that poem means.

I found this after someone pointed it out in connection to my rant, similarly ticked off by the storm of Autism Speaks messages-- I avoid reality TV, but it's crowding the A&E/Discovery genre of TV channels too.

I think I have some real problems as an autistic that I'd like researched and/or 'cured', I would like to be more robust against upsetting input, I would like my brain to respond in a more organized way to sudden changes. I also do not think the answers I'm looking for are possible under the premises presented by advocacy.

This autism speaks campaign is sick, downright SICK. It makes me tired, honestly. It makes me withdraw. It reminds me of a world so beyond hostile I can't even see the sense in interacting with it.

They don't speak for me. They don't speak for any autistic. (If they did, they'd realize how much we would object to the nonsensical slogan 'autism speaks', since it is an untruth on its face). They speak for the people who consider themselves the TRUE VICTIMS of autism-- the disappointed 'normal people' who didn't get what they wanted when they had a 'damaged' child.

For a while, we thought my baby sister might have autism. She's bang her head on the walls almost constantly because she couldn't figure out how to talk.

We had to get a speech therapist and send her to a school called "The League for the Disabled." Those things worked wonders for her. She's in second grade now, reading books at at the 4th grade level, and talking.

But what I'm trying to say is that even if she had autism, we would still love her. My family has a history of mental issues, autism isn't one of them. Mental issues doesn't change the fact that the person who happens to have said issue is any less of a person.

In my opinion, I think they are more people than NORMAL people. They can live and function on a day-to-day basis and challenge things greater than a normal person could ever imagine.

I read the things that NORMAL parents say in the article and I just want to slap them with a reality trout, or make them switch places with their child for a week.

Sorry for the rant, but it just makes me so flippin' mad when "charities" pull the "as far as we know, none of them can talk, so let's 'talk for them' to get money!" scheme.

The Autism Speaks site always makes me very very mad. I am a 21 year old autistic student, diagnosed three years ago. I've lived for 18 years without any help from any organizations. No special programs, no institutions. Just the patience and care of teachers and my parents who see me as valuable person, not a lost little child.
My mother explains that God made me, and so God made me autistic. God doesn't make mistakes. I am not a mistake. I am not a flaw. I am not damaged. I am just who I am.

I am a full-time university student who has a full and active life, with many friends. Most people cannot guess that I am autistic. It is only when I am very very upset that I have to rely on communication that is not speaking. Speaking is not communication. Not being able to speak doesn't mean not being able to communicate. Speaking is only a method of communication, like writing and art. Everyone can communicate.

And I can speak for myself.

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