Whose Planet Is It Anyway?

Friday, November 23, 2007

Nothing Linear About It

Sometimes I read articles that describe autistic civil rights as if it were a generational struggle to overcome ignorance and to create greater understanding and acceptance, in a straight-line progression, like other civil rights movements in history. But I don't see it as nearly that simple.

Yes, it's true that the efforts of past generations of disability rights activists have helped to close down some institutions, pass anti-discrimination laws, and bring about other social changes that directly benefit people today. And it's also true that explaining our differences to others leads to more understanding of the broad landscape of human diversity. The analogy to other civil rights movements falls short in some respects, though, because disability—unlike race or gender—is a very fluid concept that shifts its boundaries constantly as the prevailing view of what makes a "normal" person changes.

In particular, when we're talking about the autism spectrum and anti-autistic bigotry, there has been no epic generational struggle to overcome an ancient prejudice against a minority group. The concept of the autism spectrum was written into the DSM-IV in 1994; before that, most people who are now considered autistic did not have—or would not have had—any disability labels. Very few of the parents and grandparents of today's autistic children grew up being spoken of as mentally disordered, however similar their cognitive development might have been to that of their children. Perhaps they were bullied for being nerds, told that they were lazy or weird because they couldn't do some apparently simple tasks, or criticized because they had to struggle to find a suitable employment niche; but they were seen as part of the "normal" majority nevertheless.

To fight effectively against the sort of bigotry we're facing today, it's not enough to put it into the historical context of disability prejudice. Although this history is indeed useful to know, we also need to understand that the ugly attitudes we're confronting have arisen, to a large extent, out of a recently constructed and profit-driven agenda. We are not just fighting against historical ignorance, but also against sophisticated marketing campaigns that cleverly exploit society's fear of differences.

Right now, at this very moment, anti-autistic prejudices and stereotypes are being deliberately created by psychologists who profit from behavioral programs; by psychiatrists and pharmaceutical companies seeking to increase demand for medications; by researchers trying to attract more grants; by purveyors of fad diets and dietary supplements; by publishers and journalists who have found that there's a lucrative market for wildly exaggerated stories of doom and devastation; by nonprofit organizations whose leaders draw bloated salaries and wallow in luxurious perks; by politicians with lackluster records who think they can get more attention and votes by promising to combat a terrifying epidemic; and by other assorted parasites who jumped on the gravy train. And when they've sucked our families dry, they'll gleefully move on to the next tragic disorder du jour.

It's not enough just to argue that society needs to be more aware of disabilities. Yes, it certainly does, but we have to get to the root of the problem, which is the prevailing idea that disabilities are unfortunate ailments suffered by someone else. The fact is, every human being on the planet has differences and quirks that could be redefined as tragic afflictions tomorrow, if it became profitable to do so. We're all going to be at risk until we transform the culture into one that accepts disabilities and different abilities as a normal part of life, rather than dreading them as the opposite of normal.

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10 Comments:

  • You are completely right. I'm still humming and hawing over the services end of this though. Services can most definitely be a good thing, and you don't get services without a label. That's not new. In the past, people had less labels, but they also got much fewer services. And really, it's hard to imagine a service provision system that did not use labels (How else would you designate/identify service recipients?).

    By Blogger VAB, at 9:38 PM  

  • Labels aren't necessarily a bad thing; as you say, they can be very useful for identifying appropriate services, products, accommodations, et cetera. It's the attitudes attached to the labels that can be problematical.

    We use labels all the time in practical ways that don't stigmatize people. For example, if you are nearsighted, you get your vision checked from time to time, and you buy new eyeglasses or contact lenses. That's just part of life. Nobody goes around bleating about the tragedy of myopia or the huge cost to the economy of millions of people having to buy eyeglasses.

    By Blogger abfh, at 10:05 PM  

  • Wow. Yeah. Very well said. And yet poor vision, particularly among older people certainly does coast millions.

    By Blogger VAB, at 11:27 PM  

  • Great title; powerful post.

    By Blogger kristina, at 9:50 AM  

  • The last sentence of my comment was a bit unclear. I meant to say that millions of people need to buy eyeglasses, not that it costs millions. The cost of poor vision to the US economy is actually much higher than that. Medicare alone pays billions of dollars every year for vision care for the elderly.

    Thanks Kristina :)

    By Blogger abfh, at 10:59 AM  

  • Actually, race is not that solid a concept. For example, the "hispanic" race is a construct with no biological foundation.

    By Blogger Joseph, at 3:47 PM  

  • Joseph, you're right of course. I was referring to the long history of racial prejudice and the multigenerational nature of the struggle against it.

    By Blogger abfh, at 4:08 PM  

  • If eye glasses were given the same social stigma as autism few people would see an optomitrist.

    If medicare was even paying twice as much on the sight accomidations that people in the U.S. need, the economy would be so much better....the amount spent would way more than pay for itself.

    Most people who could contribute to the workforce the economy etc. will not seek accomidations for anything they need and I don't blame them.

    Most autistics today in the U.S. will never (at this point) be diganosed with anything that is a part of the DSM IV.

    A generation ago when no accomidations were even promised (falsly or otherwise) most autistics would not seek medical attention or any type of accomidations for fear of their differences being seen. They would hide and I don't blame them. They DID hide.

    If you asked the majority of people today whose lives people claim have been improved by the laws created by civil rights activists in the U.S.for gender, race,or disablity,many would answer, "What good have those laws done me?" Now that people think those laws are being enforced and they are not, people and the law enforcement that are supposed to protect those people are often enabled to treat people much worse.

    I think this is important. Does this make sense?

    By Blogger Ed, at 9:03 AM  

  • Ed: Yes, I'm one of the many older autistics living in hiding. I was unofficially diagnosed as a child. My parents made sure there was nothing in any official records.

    I agree that we need better enforcement of civil rights laws in general, in addition to disability rights.

    By Blogger abfh, at 2:39 PM  

  • I think you're absolutely right.

    About services. I've always maintained that you should be able to get services based on need, not an autism label. My son wasn't diagnosed till he was 4 because we just adjusted our parenting to his needs and kept on going.

    The thing is, if a child can't speak then they need speech therapy. Can't hold a pencil? OT. Have trouble finding a job or maintaining a living arrangement? Services should be available simply because a person needs help. Our lives would have been a lot easier in those early years if we could have gotten help based on "symptoms" instead of having to wait for a full diagnosis. A good example being that I put Patrick in preschool because I felt it would be beneficial. He couldn't go without a 1-on-1 person...that was obvious. But because we didn't have a label, I had to go with him (if we'd had the label he would have had a 1-on-1 person funded). Surely there could have been help available because of his obvious problems integrating without having to label him autistic???

    By Blogger mumkeepingsane, at 9:43 AM  

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