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Review Essay


photo of Rubin from documentary

Autism is A World.
Directed by Gerardine Wurzburg.
State of the Art, Inc.
DVD Release Date: June 14, 2005.
Run Time: 40 minutes.
Closed Captioned.


Defining Autistic Lives

A review by Cal Montgomery

This is the first essay in Cal Montgomery's 3-part series on Medicalization.

Read Essay 2:
Buying Sickness.

Read Essay 3:
The Way Things Are.

"I have autism," Sue Rubin tells us in this documentary about her life. Rubin is a 26-year-old Whittier College junior.

"I decided to make this film to bring people into my world of autism.... 'Autism' is a world so difficult to explain to someone who is not autistic. Someone who can easily turn off the peculiar movements and actions that take over our bodies."

Whatever disagreements I have with what Sue Rubin has to say, I think it's significant that she has been enabled to say it, that she has chosen to say it, and that she has said it to such a wide audience. To do so she's had to get access to technology and training so that she can say it in the first place; she's had to get enough support that she doesn't need to spend all her time just trying to manage the basics of life or even the basics of college life but has time to say it; she's had to organize the assistance of other people to make a documentary; and she's had to ensure that those other people didn't take the documentary over and narrate the same old "Hear Our Silence" stuff that many neurotypicals seem to think is the only story that can be told about autism.

None of this is easy. I am one of the most privileged autistic people I have ever met, and still these sorts of struggles -- plus the big one, staying free -- take over my life with disturbing frequency.

Moreover, she's chosen to do -- and I think done very well -- something that I am only occasionally willing to do: she's described her experience as a person with autism.

Ordinarily, that doesn't interest me at all. Still, when I began to hear about Autism Is a World, I wanted to see it and made sure to stay alert for it to show up on CNN's schedule. I knew Sue Rubin, a woman with autism, had written it, and I knew that Doug Biklen, who has a good reputation, had worked on it as well.

My eagerness receded somewhat when I heard that one of the goals for the film was to raise awareness.

"Awareness" is a word that I heard frequently in conversations about Autism Is a World before anyone I knew had had a chance to see it. Awareness, of course, is a standard goal of almost every book, article, lecture, and documentary about disability: the intended audience is obviously nondisabled, is obviously curious about disability, and cannot be insulted by the suggestion that maybe they're a bit voyeuristic. Nope, they just want to be aware, to understand, to become educated about the sort of people we are. Not the sort of things that are done to us, but the sort of people we are.

People want to be aware, to understand, to become educated about the sort of people we are. Not the sort of things that are done to us, but the sort of people we are. They cannot be insulted by the suggestion that maybe they're a bit voyeuristic.

Once they're aware of the sorts of people we are they have basically two options: they can react to us in some special way (special ed, special workshops, special segregation, etc.) that takes our fundamental difference from them into account, or they can lose interest altogether and wander off to do other things. If we make them aware of what is done to us as members of a group, they might join with us in collective action to challenge injustice; but as long as they're only aware of how badly we as individuals fit into the world as it is given to us, they will conclude that the problem isn't social, isn't anything they have a responsibility to oppose, but that the problem is individual and lies in each one of us.

I tend not to cooperate in awareness efforts. I am tired of being what Jim Sinclair calls "a self-narrating zoo exhibit," tired of being told by the neurotypical parents and teachers and professionals who deal with autistic people that my only value is as a sort of reference work they can use to help ensure that a couple of generations from now there is nobody like me on the planet.

It's the hows and whys of disability that really interest me, and I've learned through painful experience that if neurotypicals can get me off the subject of assistive technology and onto the subject of therapies, off the subject of access to society and onto the subject of the techniques of control, and most importantly off the subject of justice and onto a subject of whether I even have the standing to say anything about justice at all, they usually will.

And although I make exceptions to my no-zoo rule, they are rare.

But awareness is not necessarily a bad goal. When it's done well it is a good way for people who know certain things to communicate them to people who, so far, don't know those things.

If awareness was a goal of the filmmakers (and I believe that it was), they have succeeded. W.M "weeza002", for example, writes in an Amazon review that "My future stepson is 23 and autistic, and has always been treated as a [4-year-old], but this show makes me question just how much is going on below the surface. I may just be an optimistic future stepmom, but the thought that there is potentially an intelligent man trapped in that body both scares and gives me hope," directly echoing Sue Rubin's contention that "nonverbal autistic people are intelligent" and demonstrating how that belief is relevant to her own life.

It's also a way for people to challenge what has been shown and said about people like them by others who claim to be the real authorities, and it can be a powerful way for people to transform their lives and others' lives as well -- consider W.M. "weeza002"'s future stepson. There have been times in my life when the power to make other people aware of what the life I was living was like would certainly have transformed mine.

But at the same time that Autism Is a World is a step forward for Rubin, who does not agree with a very great deal that has been said about her, it's also an attempt to say something about me with which I do not agree. Rubin's experience of autism and her beliefs about what it is and what should be done about it are not even close to my own, and when she claims that this is what autism is rather than this is what my experience of autism is, I think she's crossed a line that is well-trodden but, I think, still worth defending.

And here we get into the "high-functioning"/"low-functioning" issue, which is also about who has the right to define what autistic lives are like and what people with autism and autistic people want. Rubin doesn't say in the documentary, but does say elsewhere, that

The rift in the autism community [between those people who do not see themselves as in need of a "cure" and those who do] basically is between what we label high-functioning and low-functioning people. High-functioning people speak and low-functioning people don't. The people with Asperger's [S]yndrome, also a type of autism, love to talk; however, their very narrow areas of interest give them away. These people are the ones who are offended by the idea of a cure. They could pass for normal.... I believe the idea that they should be cured is wrong. They are different, but basically are just a variation of the norm and should be accepted as such. Some even have exceptional abilities that should be celebrated and encouraged.

As a low-functioning autistic person who is still really awash in autism, I actually am aligned with the cure group, although I will not personally benefit if a cure is found. Low-functioning people are just trying to get through the day without hurting, tapping, flailing, biting, screaming, etc. The thought of a gold pot of a potion with a cure really would be wonderful.

If you use Rubin's definition, I'm low-functioning: I don't speak. Like Rubin, I use augmentative communication. Like her, I engage in self-injurious behavior (SIB). She started with facilitated communication and progressed to independent typing; I've never used a facilitator. (Not that that stops some people from assuming that all autistic typists are using FC -- check out all the comments at Amazon for some examples -- and that therefore someone else is controlling everything I type.)

If anyone knows where I can get an old wooden Ouija board to use as a letterboard, as a private joke, I'd love to hear about it.

Like Rubin, I have at times had some official, and powerful, and very pessimistic prognoses -- although mine, unlike hers, came only after I had achieved enough that people were willing to overlook what the professionals say. That bought me a lot of chances that many autistic people never get. On the other hand, her IQ test score is much higher than mine, and in a society that assumes that there is such a thing as g (general intelligence) which everybody possesses in some degree and that determines where we belong in life, and that you can measure g with an IQ test, that's significant too. So, using some criteria, she's high-functioning and I'm not ... or at least borderline not.

I managed language a lot younger, and my speech, at its peak, was very good. In my earliest memory I am upset about something my parents told me; I missed a whole lot of what was said in my presence or even to me and I still do, but I got some of it, and I've been a pretty decent reader since I was young. Rubin did not have a way to communicate until she was 13. So maybe I'm high-functioning and she's not. Or maybe, since she can at least voice words (more than that, she uses some spoken words and phrases communicatively) and I no longer can, she's lower-functioning than I was and higher-functioning than I am. Or maybe, since I type faster, I'm higher-functioning.

Rubin can clearly tolerate a lot more social interaction and especially more touch than I can; she also clearly has a lot more support than I do. I get by. I'm not complaining. I'm not locked up any more; nobody gets to define food, water, access to a toilet, and privacy as "privileges" and take them away if I'm not "good" any more. But when, in Autism Is a World, they explain why she gets round-the-clock support services (I get none at all, though I do live with a roommate who is not compensated for my presence), they are describing me as well as her. And she's very obviously much better integrated into her community than I am: the day someone delivers my groceries is the big social highlight of most 14-day cycles.

Why did I do this?
At this point, most of the people who know me are probably wondering whether this piece is my work at all. What I've written in this section is not the sort of thing I will ordinarily commit to print, and I've become more and more reluctant to even have this discussion with parents and professionals. But I'm really not sure how I can write about Autism Is a World without writing this section.

Then again, we are -- right now, anyway -- both identified as "bright" by a whole lot of people who clearly believe that some other people are "mentally retarded" according to the usual stereotypes. Rubin herself doesn't come right out and say it, but the impression she gives is that she, unlike some other people, is not mentally retarded. We are both clearly capable (except to those people who refuse to believe that autistic people using keyboards are "saying" anything at all and, in my case, those people who believe that anyone with an IQ score under 85 is by definition incapable) of benefiting from formal education. So maybe we're both high-functioning.

I've watched people -- professionals and institutionalized persons, and people I once counted as family members and friends -- react as I rapidly slid across the lines they were using to mark the boundary between "high-functioning" and "low-functioning" (or "acute" and "chronic"). It wasn't pretty. They condoned my being gang-raped, my being beaten, my being denied food and water and access to a toilet and even a heated room in the Yankee winter nights, and then when they had allowed my life to be well and truly wrecked they left me alone to deal with the wreckage.

After a series of accidents (mainly insurance and fire) made it possible, I bluffed my way back across the line, pretending that five years of my life had somehow never happened, and sometimes lying outright until after they had come to know me as a "high-functioning person."

I've watched people -- mostly people who consider themselves to be supporters of disability rights -- react to me as my ability to control my body deteriorated again and I slowly slipped across whatever lines they were using to mark the boundary between "high-functioning" and "low-functioning." A lot of them can't handle it. If they're very polite they make some kind of excuse, but either way most of them are no longer in my life.

Given that those lines are there I am grateful I had a chance to be regarded as fully human for awhile; because it bolsters my own sense that I am indeed fully human and possess the same basic human rights as other people. But I am more grateful for the people whose friendship has not recognized the lines at all; and I wish that together the disability communities could erase all of these lines and value us all.

Here are some of my problems with the "high-functioning"/"low-functioning" thing.

One is that it tends to elevate one particular part of our functioning -- speech, language, social interaction, managing our activities of daily living unassisted, whatever -- to the most important and to judge us by that one criterion.

I don't believe you can meaningfully separate autistic people into "high-" and "low-functioning."

Society chooses which traits and behaviors to prize and which traits and behaviors "they" have to show in order to be considered fully human. When it then passes judgment, it obscures those choices by focusing on the people being judged. Moreover, these most-important criteria are always believed to be individual traits and in no way determined by society's "we." Why not look at the fact that both Rubin and I have more chances to choose how our lives are going to go than do many autistic people, including some who speak and some who don't, and call us both "high-functioning" on that basis?

The "high"/low" distinction seems very often to be an expression of personal values and of personal value. There's no real reason to choose one way of splitting us up over the others.

Another problem I have with the "high-functioning"/"low-functioning" divide is that the distinction is frequently used to discredit one group, and to regard the opinions of the other group as binding for all of us. Rubin, for example, finds it "offensive" that some "high-functioning" people regard autism as a difference and not something to be cured. I hear that claim a lot more from neurotypical people than from autistic ones. One of the usual distinctions that gets made is this: if you are capable of making your opinions known, then you're obviously not autistic, because autistic people can't communicate. And if you're not autistic, obviously you aren't qualified to pontificate on what autistic people believe (shortened to: if you are capable of making your opinions known, you aren't qualified to have them).

The argument that some people are better off than others, and that those who are better off shouldn't be given carte blanche to decide what the others should or shouldn't want, is a good one, however.

But it goes both ways. Many of those "high-functioning" people mount exactly the same argument, finding it offensive that a lot of neurotypical and some "low-functioning" people insist that it is not okay to be autistic, and that they justify a lot of behavior that autistic-and-proud people regard as abusive, in the name of "helping" autistic people. (At one point in the film, spoons -- which Rubin finds comforting -- are taken away, and Rubin is told she can only have them back if she does what the support worker wants. I'm a survivor of institutions: anyone who tries that sort of thing on me on me is in for a very frustrating interaction.)

Society chooses which traits and behaviors to prize -- which traits and behaviors we must exhibit in order to be considered fully human.

The "high"/low" distinction seems very often to be reducible to a rights/cure distinction: it's about our political positions. I don't believe you can meaningfully separate autistic people into "high-" and "low-functioning" in the first place, but if you can it's not by comparing their political opinions.

A third problem with the distinction is that it's used to try to prioritize support for some people over support for others. If you've ever dealt with an independent living center that points to government figures estimating that 1 in 5 Americans has a disability when asking for money, but uses a much stricter definition of "disability" when spending money, you're familiar with the general outline of this problem. Either "high-functioning" autistics should get the money because they're the ones who can benefit the most, or "low-functioning" people with autism should get it because they're the ones who are most in need.

The high/low distinction seems very often to be reducible to a fight over resources. The U. S. is rich enough to meet the basic needs of all its disabled people (including removing barriers that keep disabled people from contributing to the country's wealth), and if it isn't providing disabled people with adequate resources, the answer is solidarity in the face of injustice that affects all of us, not trying to grab crumbs from one another.

Then there's the way the distinction is used to determine the sorts of benefits society is prepared to offer. Just as many people believe that it's the "high-functioning" crowd that wants rights and the "low-functioning" bunch that wants cures, parents who want inclusive education and integrated housing are assumed to be raising "high-functioning" children, and parents who do not believe that adequate services can be provided except in separate settings are assumed to be raising "low-functioning" children. Parents of "high-functioning" adults may want job trainers and supported employment; parents of "low-functioning" adults may want day programs that focus on social and habilitative goals.

The high/low distinction seems very often to be a fight over the kinds of lives made available to autistic people.

Consider this: disabled people are disadvantaged within society. That disadvantage is believed by most members of that society to be a natural consequence of individual physical and mental deficits which are properly considered medical problems.

Let me get back, now, to what autism is to Sue Rubin.

"Autism is a constant struggle." It's "awful."

She talks about "killer autism behaviors" and shows us her helmet. Literally, of course, headbanging can kill you, but Rubin is also pointing out that autistic behavior has the power to kill her connection to the world. She spent 13 years without the ability to communicate, and during that time she also had real difficulty understanding what was going on around her.

Rubin appears to believe that the problem is that autism limits her ability to function in the world, whereas I believe that the problem is that the world is set up for neurotypical nondisabled people.

"I want to know why I do weird autistic things I don't want to," says Rubin, as she is shown on screen visiting Margaret Bauman, an "expert on the neurobiology of autism at Harvard." "What is autism?" she asks Bauman.

"We don't have all the answers," Bauman tells her, but they believe that it's got something to do with the "wiring" in the brain.

Having autism, says Rubin, is different from being retarded. "Retarded" (or "feebleminded") appears to Rubin to be a kind of person. She hates being mistakenly thought to be "retarded." (One "weird autistic behavior" Rubin willingly does even though she thinks it helps to make her look "retarded" is to carry spoons with her. It's calming.)

Her family believed, until she was 13, that she was "retarded" and Rubin agrees that that was a reasonable belief, based on her behavior. Moreover, she thinks that maybe she was "retarded" -- until she could communicate she couldn't understand the world. When she was 13, however, someone began trying FC with her. "My mind began to wake up." Now, she says, she's definitely not "retarded."

I, on the other hand, see myself as an autistic person. The behaviors and experiences that get me labeled "autistic" are, I think, part of me. I want to change some of them, sure. I want to not hurt myself (or at least manage to only do it when I'm alone), and it frustrates me that I am getting worse at that. I want to always manage to get my helmet on before I hit my head on something. I want enough motor control to type on my communication device and navigate my powerchair whenever I'm out. I also want to understand the writings of Michel Foucault, to stop cursing so much, and to make friends where I live. And I want a dog.

Think, for a moment, about the move from seeing oneself as a disabled person to seeing oneself as a person with a disability. Rubin, here, has moved from being a retarded person to a person with autism, but many people keep the same basic diagnosis: a retarded person becomes a person with mental retardation (and then, often, a person who has been labeled "mentally retarded"), or an autistic person becomes a person with autism.

Disability stops being the kind of person you are, and instead becomes a thing that is separate from you, and that you have. It stops being a major determinant of your chances in life, and instead becomes one inability or a few related inabilities in the large constellation of abilities and inabilities that a person possesses. Many people with autism have made that move; others have learned from the outset that they are people with autism from parents and teachers.

With that shift comes an acknowledgment of potential. While Rubin "had to prove that [she] was a capable student," she is now benefiting from having proven that. Other disabled people who have become people with disabilities have come to recognize their own potential and have potential recognized in them by people without disabilities.

Some of us resist that step. We do not believe that autism is a thing that we have. "Autism is not a peripheral feature," writes A.M. Baggs, "that I can discard. Autism shapes my mind, my personality, my senses, my values, my goals, and my dreams. Autism is the source of my difficulties and my strengths, and of the unbreakable ties between them. Autism is a significant, dominant, and irrevocable part of what makes me, and my closest friends, unique."

Rubin notes that "nonverbal autistic people are not given an opportunity to show their intelligence." Baggs says that, too, and so do I, although all three of us are given more chances than are many of our "peers" (and all three of us know that); and although all three of us are given more chances now than we have had at some times in the past.

All of us make the connection between inadequate support systems and our lives falling apart. All of us worry about our futures.

But where Rubin appears to believe that the problem is that autism limits her ability to function in the world, I believe that the problem is that the world is set up for neurotypical nondisabled people. I believe that the problem is that most people take for granted the way the world is. I believe that the problem is that they identify "defects" in individual autistic people, that they presume that these defects are somehow medical in nature, and then, having diagnosed autistic people's failure to manage in the world as an individual medical problem that happens to show up in a whole lot of us, they conclude that medical professionals should be curing -- or at least controlling -- us. And having made that conclusion, they continue to accept or support ways of living that shut us out.

Will I buy a copy of this DVD? Probably not. Will I recommend it to people who want to know more about the various perspectives different autistic people express, or about the value of augmentative communication, or about the fundamental humanity of people who behave very differently than do most of my neighbors? Absolutely. It's a well-done film that expresses a valuable perspective, and one that needs to be taken into account. It's a direct attack on some of the most damaging ideas about autism, and it's a powerful statement about the value of communication.

Posted 6/30/2005

Cal Montgomery is autistic. She has written for Our Voices, the newsletter of Autism Network International and has presented at ANI's annual conference, Autreat. She also writes for Ragged Edge.

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