Whose Planet Is It Anyway?

Thursday, January 03, 2008

Not Just About Barriers

People think of themselves as disabled—or not—for a variety of reasons, as both Joel and Ballastexistenz discuss in blog posts that address the meaning of disability. They accurately point out that it does not mean a person lacks ability in general, has a low level of functioning, or has more negative characteristics than positive. Rather, they describe disability as arising from barriers imposed by society; according to this formulation of the social model of disability, if a person has significant difficulties because of such barriers, the person is disabled. Thus, Joel argues that autistics are disabled—and should accept that identity—because the world is not designed to meet the needs of autistics.

It’s certainly true that many people encounter major problems in their daily lives because of unnecessary barriers in their environment, and this is indeed a large part of what we call disability. However, in my view, it is not just about barriers. There is another complicated dimension that involves cultural attitudes and value judgments about the significance of particular barriers and difficulties.

Consider this anonymous comment that was made on one of my old posts, addressing autistics who do not consider themselves disabled:

Just as many people in the disability rights movement seem overly focused on certain common physical injuries to the point of forgetting about people with other disabilities that can't be fully accommodated with a wheelchair ramp, many people with specific disabilities seem to be jumping ship, and declaring themselves not disabled... The problem, for me (a plain, ordinary cripple) is that it seems to be accepting all the bad ideas about what being disabled actually means. The logic seems to be "well disabled means there's something wrong with you, and you're not really capable of functioning without accommodations and assistance." I can function perfectly well in modern society with a pair of crutches I buy with my own money and no need for ramps, elevators, special parking, Social Security, Medicare, accommodated testing, or a personal assistant, and yet if I denied I was not disabled on these grounds, I'd be laughed at. Declaring your difference is not a disability but mine is, suggests there's something bad about being someone like me that you don't want.

As this commenter describes, certain kinds of people get automatically lumped into the sociological category of disabled people just because of their appearance, regardless of whether or not their environment presents any significant barriers for them. The commenter may be completely comfortable with her crutches and may have no problems going wherever she wants to go, but society classifies her as a disabled person on the basis of a categorical assumption that using crutches always equates to having major difficulties.

I see the same sort of assumption underlying the claim that all autistics are disabled. While many of us do face significant barriers in everyday life, others have been fortunate enough to find or construct fairly comfortable niches in society (and no, that doesn’t mean we are “cured”). Here, too, a categorical assignment to the disability category is being made because of a label based on appearance—even though the concept of the autism spectrum has been in clinical use only since 1994. Did millions of people worldwide suddenly become disabled when a few psychiatrists got together and added more paragraphs to the DSM? If so, what does that say about the nature of disability in today’s society?

Joel, with all due respect, I’m going to decline your invitation to embrace my identity as a disabled person. I recognize that there is a tremendous amount of disability prejudice in our society, it is often directed at autistics, and political solidarity among oppressed groups is essential to fighting back against prejudice and discrimination. Still, I don’t regard disability as an intrinsic part of my identity—not when my social assignment to that category can be so easily changed with a few keystrokes by a committee of psychiatrists. My goal in writing about disability is to deconstruct and tear down the prejudices that allow a privileged group to be arbitrarily defined as “normal.”

To make myself clear, I have no intent to deny or disparage, in any way, the disability culture; many people find it to be a very meaningful part of their identity, and I respect their cultural identification. My personal outlook, however, is similar to that described in a blog post by Anne C. regarding her view of transhumanist culture; she writes that although “transhumanism” is a useful label for certain social and political concepts that she finds interesting and that need more discussion in our society, she does not see herself as having a cultural identity as a transhumanist.

I do identify with the autistic culture, which overlaps to some extent with the disability culture—but in my view, that has nothing whatsoever to do with diagnostic categories and has very little to do with social barriers. Rather, it has to do with growing up in the sort of family where it was OK to love books, and to wander around exploring the mysteries of nature, and to have strong interests and chatter about them to anyone who came near, and to try on different schools like items of clothing to see if they suited, and to imagine alternative configurations of just about everything, and to plan earnestly how to change the world, and to take university courses because they seemed fascinating rather than because a career checklist demanded them. This is an ethnic minority culture that is very real to me and is well worth the strongest efforts to preserve; and if society doesn’t find it useful or practical, that just means society needs to be taught more appreciation for differences.

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  • I just sort of realized this today, but I think a lot of the disagreement with regard to whether autistics or others who deviate from the typical in some way should or should not identify as "disabled" comes from where you see the "disability" designation as originating.

    If you see it as originating from, say, the people who run the medical establishment and author books like the DSM, you're not likely to be comfortable adopting the "disability" designation. But if you see it as originating from within a branch of the civil rights community focused on addressing functional cognitive and bodily differences, then you are less likely to have a problem with such a designation.

    I think there's some validity to both perspectives, however, I think the disagreement is essentially semantic. You don't seem to be arguing that any segment of the population is actually superior/inferior (rather, you seem to take the perspective that the very concept of disability-versus-normality ought to be called into question), and because of that, your points make sense to me.

    However, there are some people who reject the disability designation not because (like you) they question the source and the validity of it altogether, but because they genuinely believe that "disabled people are people who have something wrong with them" and they want to put some distance between them and "those people".

    I think that is the thing that people are mainly trying to root out and address when they suggest that autistics ought to consider themselves part of the disability community.

    The whole, "I'm okay, but those people need a cure, don't have rights, don't deserve the same ethical standards as others, etc." attitude is not unseen in some areas of the autistic community (particularly in areas where people try to claim that, say, Asperger's makes them superior).

    I don't necessarily agree that the only way (or one of the only ways) to eliminate that bad attitude is for all autistics to claim membership in the disability community, but what I do agree with is that there's a ton of good information and ideas within disability theory, literature, and civil-rights history that autistics could benefit from learning about. Heck, there's a ton of good stuff in that body of work that is light-years ahead of what a lot of present-day transhumanist-types write about cyborgs and modification and whatnot -- it's not so much about the word "disability" as it is about the content of the work in terms of what's important and useful.

    At least, that's my opinion now based on what I've read/learned up until this point; it could always change with more data.

    By Blogger Anne Corwin, at 7:36 PM  

  • Ben feels his "autism" label is a construct of psychologists in order to benefit themselves and the pharmaceutical companies. He takes it personally and it makes him angry! But he really hasn't seen the other side: "birds of a feather flock together". His label has never been a source of pride for him, but of shame and singling out. I look forward to the day when societal constructs (ie, schools) no longer figure such a large part of his self worth, or the lessening of it. He is for sure not alone in that...

    I also came from a family where quick minds and "outside the box" thinking were rewarded and encouraged. We didn't know we had a disease, we thought we were blessed.

    Looking over the Wiki definition of transhumanism, a totally new term to me, I have one concern. Although it may not be a consensus, I personally feel conflicted with the idea ameliorating what it regards as undesirable and unnecessary aspects of the human condition, such as stupidity, suffering, disease, aging and involuntary death . Initially, being the imperfect goofball I am, I thought...there goes my brain transplant ...and then again, stupidity is such a SUBJECTIVE TERM. We already have "heroes" trying to rid the world of "mental illness", another highly SUBJECTIVE TERM.

    Good for you that you don't accept the zealotry of some, Anne C., on a personal level. Real people tend to get in the way of perfect ideas.

    Sorry for the novel.

    OH, YEAH...now I finally know what a 'luddite'(sp?) is!!!

    By Blogger Usethebrains Godgiveyou, at 8:38 PM  

  • r.b.: Yeah, I have some major problems with some explanations/formulations of transhumanism as well, which is one reason I am uncomfortable with the idea of "promoting" it. I would rather promote what I actually think and value than simply get behind some vague ideology that might end up promoting things I don't agree with.

    By Blogger Anne Corwin, at 10:21 PM  

  • My Brother regards Aspergers as a social construct and does not believe in going for a diagnosis, however that does not mean he is not disabled by the same social and economic forces that disable me, because the underlying autistic difference increasingly affects his ability to find work as much as it does for me.

    By denying the disability what we are doing is actually re-inforcing the medical model and thereby adding to the problem that other groups of disabled people have.

    Our advocacy then becomes something different in fact it becomes oppressive of another group.

    By Blogger Larry Arnold PhD FRSA, at 10:35 AM  

  • Larry: Your statements make sense. Before I had a documented diagnosis, things weren't somehow "better" for me in terms of school and employment (and other) situations. In fact, they were worse, though I realize that has more to do with social-structure problems than with anything about the utility of designations.

    Misunderstandings and discrimination occurred not due to my being linguistically designated in a particular way (label-based discrimination exists, but is something different), but due to living in a world where people with my perceptual/cognitive style and pattern of strengths and weaknesses weren't "planned for" (as Amanda put it). While I respect the idea that it's wrong to divide people up into "normal" and "abnormal" groups (especially since every individual is unique) I also think that differences do need to be acknowledged. Not pathologized, but acknowledged and addressed through structural changes in the society.

    In other words, the fact that people with particular differences tend to have particular difficulties is a strong signal that something is very wrong with the society such people live in, and that the structure of it needs to change.

    By Blogger Anne Corwin, at 1:50 PM  

  • Rose: I wonder if Ben would benefit from being mentored by an autistic university student? The Autistic Self-Advocacy Network has been working on setting up mentoring programs for teenagers; there may be someone in your area who is participating.

    Anne and Larry: I agree that differences and problems shouldn't be denied and that such denial adds to the struggle of others who have the same issues; and to the extent that I may have problems arising from barriers in my environment, I have no objection at all to the use of the word "disabilities" to describe them. It is a very functional and useful word in that context.

    As Anne points out, whether someone prefers to be called "disabled" or "a person with a disability" is to some extent just a semantic difference. Having a preference for person-first language in this context because disability is a socially imposed condition, rather than an inherent part of one's identity, is basically the converse of the objection that many of us have to using person-first language for autism.

    It's certainly true that we can learn a lot from disability studies and civil rights history. I focus more on the civil rights struggles of racial minorities in drawing analogies, but it's not because I have any objection to the word "disability" or the existence of a disability community; it's just the way my particular areas of interest tend to flow.

    By Blogger abfh, at 3:37 PM  

  • I linked to you. You think, like, clearer than me and stuff. Duh.

    I consider it amazing that I can string anything remotely coherent together, given that I'm 38 weeks pregnant and the mother to five, soon to be six kids.

    So I appreciate your thoughts on this, as it's quite timely for me.

    By Blogger Phoebe, at 11:44 PM  

  • This is a very instructive and constructive conversation. Very good.

    By Blogger A Bishops Wife, at 7:59 AM  

  • Your argument is a little contradictory; the social model talks about all the social experiences which are different for some of us because of some bodily, neurological, cognitive, psychological or other difference. This has nothing to do with a diagnosis, or a particular type of barrier, so long as it is societal in nature.

    In the same way, being white or a person of colour is not to do with a specific skin tone or set of genes, but to do with the way that other people treat you; if you can pass for white, then you have one experience, if you are regarded as being "racially" other, you have another sort of experience.

    Therefore, according to the social model, you are disabled the minute that other people regard you as being disabled for whatever reason that might be.

    You can also be disabled when other's don't think you are; people with mental ill health are often regarded as being flakey or malingerers, but that attitude in itself disables them.

    I hope that makes sense - brain not entirely on track today - and of course I absolutely respect any individual's wish to be described in their own terms.

    By Blogger The Goldfish, at 9:10 AM  

  • The Goldfish: I've responded to your comment here.

    By Blogger abfh, at 10:21 AM  

  • For the love of God, how long are we going to have to take seriously ideas that ALL autistics should do this, that or the other. The DSM diagnostic criteria for AS are flexible enough to admit diagnosis to different individuals who have little in common. Isn't it time to admit that not only is there huge heterogenity among those designated "autistic", and I'm also sure that the term autism is being used as a convenient euphemism for general intellectual disability by many clinicians.

    By Blogger Lili Marlene, at 5:55 AM  

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