Whose Planet Is It Anyway?

Friday, November 09, 2007

Unfashionable Abilities

Every now and again, someone misrepresents the neurodiversity movement by claiming that its adherents believe autism is not a disability, but a wonderful gift and the next stage in human evolution. Without fail, several pro-neurodiversity bloggers respond that they don't believe any such thing—that yes, autism is a disability, but that it is OK to be disabled, and that neurodiversity is all about making the world a more accepting place for the cognitively disabled.

Speaking only for myself here, neither of the above viewpoints accurately represents the way I see neurodiversity. The question of whether or not autism is a disability is a false dichotomy, as I see it, and the wrong question to ask.

There are two main schools of thought with respect to disability: the medical model, which characterizes disability as consisting of medically defined impairments; and the social model, which looks upon disability as a culturally constructed status resulting from society's failure to provide adequate services and accommodations to enable full participation in society by those who have physical and/or cognitive differences.

Most of the arguments about autism as a disability seem to be rooted in the confusion caused by these conflicting approaches. Behaviorist and biomed supporters chiefly see autism in terms of the medical model, that is, as a defect to be remediated by means of various therapies. When someone disputes the validity of their medical claims, they're likely to interpret that as the equivalent of denying that autism is a disability or that autistic people have medical problems. Neurodiversity supporters, on the other hand, generally embrace the social model of disability and argue that social acceptance of cognitive differences is the most important issue. According to this view, treatment of medical problems, while appropriate to the extent it is based on solid and unbiased scientific research, should never be a substitute for respecting and protecting human rights.

As a consequence of the different ways in which the term "disability" is being understood in the autism community, the discourse often degenerates into straw-man claims that have little to do with reality. This is what I have to say about that: It's time for everyone in the various camps to recognize that these issues are very complex and that unrealistic caricatures of opposing views are not going to help autistic people or their families. I haven't seen any neurodiversity supporters who would deny that some autistic people have medical problems; disputing issues of causation and treatment is another matter altogether and has more to do with scientific accuracy than with political activism. I also don't believe that the majority of behaviorist and/or biomed supporters are ogres who consider the civil rights of autistics to be totally irrelevant.

Regarding the straw-man depiction of neurodiversity as some sort of aspie supremacy cult, I'll note that a few people have indeed argued that autism is the next stage in human evolution; however, my impression is that they're mainly teenagers who complain on forums that they don't get enough respect for their academic talents. As they grow up and develop a more mature perspective, they'll eventually realize that high scores on tests do not equate to overall intellectual superiority and should never be used to pass judgment on anyone's value as a human being. (And maybe they'll learn how evolution actually works, too.)

Although I generally agree with the views expressed by the pro-neurodiversity bloggers, I don't believe that it is appropriate under the social model of disability to make categorical statements such as "autism is a disability." Yes, it's certainly true that some aspects of autism are disabilities under some circumstances; but the same could potentially be said of any other set of human characteristics. To put it another way, today's disability classifications often are based on irrational prejudices and subjective value judgments; they're not just about a lack or impairment of an ability.

When pro-neurodiversity bloggers write that autism is a disability, I think what's meant is that in today's society, autistic people can benefit significantly from services and accommodations that are not commonly available. I don't disagree with that observation, and I believe that accommodations for all sorts of differences should be made available as a matter of course; but, at the same time, I think we need to be very cautious about declaring millions of people to be disabled on the basis of recently created and vaguely defined diagnostic classifications. On that point, here's an excerpt from the anti-psychiatry essay Shrinking to Excess:

The latest edition of DSM lists more than 300 mental syndromes. Only two decades ago, an earlier edition listed a mere 106... the psychiatric establishment is foisting these invented illnesses on us in a bid to lay claim to handsome reimbursements from insurance companies. For psychiatrists to receive payment from health insurance companies, they must find a way to label a patient with a recognized condition--which is why they recognize more, and more, and more conditions. Wait for the next DSM, and there will be at least another 50 conditions added to the existing list. According to Drs. Kutchins and Kirk, "the unlabeled masses are a vast untapped market, the virgin Alaska oilfields of mental disorder."

When we fail to challenge the authority of medical professionals to classify and pathologize traits that once were accepted as natural human differences, we make ourselves complicit in perpetuating a modern-day caste system that ranks people according to their perceived normality. The central underpinning of this oppressive system is the arbitrary division of the human race into "disabled" people and "normal" people, which depends largely on what sort of abilities happen to be fashionable at the moment. Instead of playing along with this destructive charade and obediently agreeing that we are disabled because they say so, we ought to be standing up and screaming at the top of our lungs that the Emperor of Normality is butt-nekkid.

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  • Excellent analysis and post, ABFH. We need more discussion on this level.

    By Blogger Dave Seidel, at 11:27 AM  

  • Yes very interesting.

    By Blogger Casdok, at 11:53 AM  

  • Interesting thoughts there. I've also considered that "autism is a disability" may not be an entirely accurate statement. Certainly, a lot of autistic people are disabled. But autism is not necessarily a proper subset of what is called disability. The definitions don't necessarily overlap that way. Either way, a social model of autism is an important model to have, and it has some relationship to the social model of disability. Politically we're talking about the same thing roughly.

    By Anonymous Anonymous, at 1:23 PM  

  • This is so good, I can't figure out what to say. Thanks, ABFH.

    By Blogger Bev, at 2:09 PM  

  • ABFH wrote regarding the idea of autism not being a disability, "but a wonderful gift and the next stage in human evolution" : "Without fail, several pro-neurodiversity bloggers respond that nobody believes any such thing—"

    Is this true that someone wrote that "nobody believes such a thing." I can't remember reading this, but maybe it's slipped my memory. What I remember reading is that most people say in response something like, "there are people who believe that, but I don't, and I think the ones who believe it are not at the forefront of autistic self-advocacy".

    I have known for about 5 years that there are ASD folks in online communities who say that Asperger's is a better way of being than NT is. I don't know if they were all teenagers who were saying it 5 years ago (on a delphiforum). I argued with them then, saying it didn't make sense to say that Asperger's was "better than NT" or that it was a state of advanced evoution.

    And then there's the problem of some (I don't know how common they are) "Aspies" saying that they are better than NT and that the "low functioning" need to get fixed or eliminated.

    To me, Asperger's/autism/ASDs just are.

    I think it's a mistake to make a big point that autism is not a disability because people's lives depend on their getting services as disabled people. My kid has a physical disability plus ASD that complicates his/her ability to care for his/her own needs. If the gov't doesn't see him/her as "disabled" then the aid evaporates.

    So I say my kid and I are disabled but the edges of "disability" are fuzzy and you can make anyone disabled by not giving them what they need to function. You can make any currently recognized disability a bigger or smaller problem by doing things like adding or removing elevators, adding or removing Braille materials, taking away a guide dog or cane, taking away a wheelchair, or giving a wheelchair.

    I think most people can't conceive of the kids of aids that ASD people would benefit from and how ASD people could function better if they got accomodations of the level of "wheelchairs for people who can't walk" for their differences. Who is going to mandate quieter grocery stores? I bet the noise level of the typical grocery store in the US has quadrupled or more in the past 40 years. Fluorescent lighting, buzzes and flickers... the big move is to go toward more fluorescent lighting here, not less. Restaurants designed so that you can't hear the crashing of pots and pans and glassware, and so that sound don't carry easily. These days restaurants are designed for appearance with lots of fancy tile, glass, stone and metal surfaces that reflect noise rather than absorb it. Then add cappuccino machines and other noise appliances like blenders and some restaurants are inaccessible for me as much as putting in a set of stairs that block access for a person in a wheelchair.

    By Anonymous Anonymous, at 2:37 PM  

  • You aren't quite getting the nuances of the social model of disability. You're missing something there if you think it implies that people who believe in the social model believe something like "autism is a disability." They do and they don't. The key is that they believe it is a disability when it takes place in a society that is not designed for these things, but not one when it is in a society designed for these things. This is true of all things called "disability" according to the social model.

    If the world was made up of exclusively people without legs, not having legs would clearly not be a disability. Yet if the world was made up of mostly people who could smell as well as a dog, someone with a "normal" human sense of smell would be disabled.

    That's the nature of the social model movement. Not that "autism is a disability."

    By Anonymous Anonymous, at 2:46 PM  

  • Dave, Casdok and Bev: Thanks much!

    Joseph: Yes, when I use terms such as "people with disabilities" on my blog, I usually mean it in the political sense, that is, people who are targets of disability prejudice.

    Ms. Clark: I've edited the post to delete "nobody believes any such thing" because I'm not sure where I read it; perhaps I was thinking of comments on blogs, rather than actual blog entries. Thanks for the constructive criticism. Also, I agree with your point that we shouldn't argue that autism is not a disability; my argument is that categorical statements shouldn't be used one way or the other. I do understand that the current disability system is set up to require categorical labels (I'll probably write a post on that subject in the near future).

    Anonymous: Thanks for pointing out an awkward sentence; I've edited it to clarify that I was referring to the views held by some pro-neurodiversity bloggers. As for the hypothetical people who could smell as well as a dog, if they didn't rely on their sense of smell to do anything significant in their society, then a person who couldn't smell like a dog would not be disabled. In fact, such a person's lack of a doglike sense of smell might not even be noticed because it would not be a topic of conversation. Disability isn't just about having less of a particular ability than the majority population; it also involves a social value judgment as to how necessary that ability is.

    By Blogger abfh, at 5:44 PM  

  • Excellent post! You talked about something similar a while ago and since then I've been thinking a lot about models for the provision of services without using labels. Labeling is a key part of the services gate keeping process and it really should not be.

    Sorry to wax Marxist, but it seems a natural place to apply -- from each according to their ability, to each according to their needs.

    By Blogger VAB, at 6:57 PM  

  • "When pro-neurodiversity bloggers write that autism is a disability, I think what's meant is that in today's society, autistic people can benefit significantly from services and accommodations that are not commonly available. I don't disagree with that observation, and I believe that accommodations for all sorts of differences should be made available as a matter of course..."

    Does this mean the government should pay for hookers for guys with Asperger's who can't get a date?

    By Blogger John Best, at 7:44 PM  

  • Re the evolution thing: one of the BIGGEST commonly believed fallacies about evolution is that it has a direction - that "the next stage in evolution" of humans is necessarily going to be more intelligent or somehow overall "superior" humans, for example. Evolution is the result of natural selection pressures acting on random genetic mutations. No one is "guiding" it, it isn't conscious, it doesn't have purpose. So to say autistic people are "the next step in human evolution" - which COULD be true, if for some reason autistic people's chances of reproduction were increasing while neurotypical people's chances were decreasing - is actually not a statement containing any indication of "superiority" at all...

    There actually is a fairly reasonable theory that conditions of the last 30 years or so (primarily globalised communications) have increased autistic people's chances of forming sexual relationships and therefore of reproducing - in which case, it's kind of ironic that we are an evolutionary "adaptation" (which is a misleading phrase, as it tends to lead people to believe the directionality fallacy outlined above, but i can't think of a better one) to conditions which are almost certainly ecologically unsustainable for more than a few more decades...

    Then again, there's also a theory that autism exists in Homo sapiens as a result of the genetic influence (through interbreeding) of another, now extinct, hominid species (for whom autism, or something like it, would have been neurotypical). I don't think i actually believe that one, tho...

    I don't even want to get into the whole "ethics of disability and prostitution" debate (suffice to say, a "hooker" wouldn't *remotely* come close to helping with my desires/frustrations, and would probably make things worse - i want the opportunity to *give* pleasure, not take it). There are some really good essays about it at the University of Leeds's Disability Studies archive if you are seriously interested and not a troll, tho...

    By Blogger stevethehydra, at 7:59 PM  

  • Shiva,
    If you'd rather give pleasure, maybe you could become a hooker. You can probably find plenty of neurodiverse clients.

    By Blogger John Best, at 8:16 PM  

  • Poor Sam,

    This is a comment about your own loneliness and lack of social skills isn't it? I suppose you could contact a politician to see if he'd go for accomodating you this way.

    By Anonymous Anonymous, at 8:31 PM  

  • Sen. Craig might be interested. How's your stance these days, John? Still looking for some of that marital diversity?

    By Anonymous Anonymous, at 12:00 AM  

  • There actually is a fairly reasonable theory that conditions of the last 30 years or so (primarily globalised communications) have increased autistic people's chances of forming sexual relationships and therefore of reproducing

    Yes, but we're still pretty bad at it, let's be honest. We'll always be in the minority, but perhaps not as rare.

    By Anonymous Anonymous, at 9:44 AM  

  • I know the prostitution question wasn't meant to be serious, but I'll answer it anyway. I don't believe the government should ever fund anything that promotes prostitution because it is a nasty business that exploits drug-addicted young women who often are abused by their pimps.

    But if I were your boss, Fore Sam, I wouldn't object to accommodating your golf obsession by letting you leave work early on sunny days, if you could get the rest of your work done at night. That's the point you seem to be missing about accommodations: All of the work still has to get done. Slackers don't get a free pass to goof off. The idea is to make people more productive by adjusting their environment, not less.

    By Blogger abfh, at 12:46 PM  

  • I think it is very important for everyone to realize that if someone's objective ( as in government, media, or a perception that is influenced by either or both) is contrary to that of what is best for everyone, they will use what ever tool is convienient.Unless that conveinience is challanged the power of any or all of these tools will be used to hurt rather than help people.

    People in the U.S. are not considered to be disabled in order that by doing so it will make their lives easier. Instead that is done to make things easier for the government. Idealist who are caring and compassionate may work within the government who really care and want to help and empower people so that everyone who can make a contribution is provided that oppertunity.

    However, The final athority would much rather those who don't fit in or keep up with their ever changing standards that become more and more narrow all the time were just out of the way.

    Yes, they would rather that people not be on the streets but only because we are inconveinient there as well. Does that mean that they would rather we were dead? Few people who are running things would like to see themselves as that cruel or harsh. Few others would like to think that we are supporting any agenda that is that hasrh. No one wants to believe that they live in a place where their friends and family and EVEN THEMSELVES could be treated this harshly or thought about in such harsh standards.

    Well guess what! We in the U.S. don't live in such a place. As far as I know the laws still provide us with the ability to change things so that people with wrong and bad agendas don't govern us. Or at least we DO have a great deal of athority that we aren't using.

    We need to make it so that accomidations for people just because they are people exist along with accomidations for everyone and anyone who can be productive is provided with such accomidations. Disability for many people is a sentance and so is being seen as weird strange or aberant. So many of these things are not being considered. Actually they are being ignored by many. What ever change is going to come it needs to be a big change and it needs to happen now.

    These ideals are not so far out of reach that they cannot be met. Instead it is peoples belief that we can change things that are so out of hand that makes people careless about their responsibility and fearful of what we have do instead of fearful of what will happen if we don't.

    By Blogger Ed, at 1:54 PM  

  • peoples belief that we CAN'T change things (not CAN) that was a typo

    By Blogger Ed, at 6:55 PM  

  • Thanks ABFH for this good and comprehensive post about this important matter.

    I have written some more of my ideas about this on my page and linked that to your post.

    By Blogger Ed, at 1:10 PM  

  • Ed, you're quite right that the government and others in positions of power have too many convenient solutions that don't really help people. I'm going to write more about that soon.

    Here's a link to Ed's post for anyone who may be interested.

    By Blogger abfh, at 11:14 AM  

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