Whose Planet Is It Anyway?

Sunday, September 09, 2007

The Left Hand of Equality

In response to my last post, a reader raised the issue of how autistic people would get needed services if the autism diagnosis were to be removed from the next edition of the DSM.

Here is my pictorial answer to that question:

You're probably wondering why I posted an image of such an ordinary, everyday item as a pair of left-handed scissors. What does that have to do with a complicated issue like autism services?

Well, according to the social model of disability, just about any configuration of the human body can be disadvantageous if the environment is poorly suited to the person's individual needs. Most of our potential disabilities (of which there are many) go unnoticed because our society accommodates our differences adequately. Those of us who happen to be lefties can buy left-handed scissors and other products designed for left-handed use, instead of struggling awkwardly with tools made for right-handers. There's no requirement to be diagnosed with a handedness disorder, or anything of that sort, in order to gain access to lefty products. Vendors have recognized that there is a demand for this merchandise, and anyone can buy it, usually at a reasonable cost (granted, some specialized tools can be scarce or expensive for left-handers).

In a more rational society, products and services designed for autistics and other neurological minorities would be just as easy to obtain. There's no inherent reason why they should be prohibitively expensive. Anne C. of
Existence is Wonderful just blogged about buying a portable word processor with text-to-speech capability for 10 dollars. Such products, however, can end up costing thousands because they are purchased by government agencies, insurance companies, school districts, and other bureaucratic disability services providers. Vendors can get away with price-gouging because of the pervasive (and largely groundless) prejudice that "disabled" people cost much more than "normal" people.

Another factor making disability services unnecessarily expensive is society's assumption that certain kinds of people must be closely supervised at all times and cannot make their own decisions or do anything productive. Institutionalization is the classic example of providing costly and unnecessary full-time care, but large institutions are not the only places where this occurs. Quite often in today's society, an autistic teenager who has self-care difficulties will be placed in a group home and treated as if he is incapable of ever working or living independently. Given the opportunity, though, he might do just fine in his own apartment, with a housekeeper coming in once a week to tidy up the place and do his grocery shopping for him. If he could get a decent job without being discriminated against because of his autism, he could pay the housekeeper out of his own wages.

To be clear, I'm not arguing that every autistic adult ought to be self-supporting; after all, there are many non-autistic adults who cannot earn a living wage, for various socioeconomic reasons. But if our society assumed competence and provided equal employment opportunity, there would be more workers contributing to the economy and more disability funds available for those who truly could not work (as determined by individual assessments, not broad labels).

Society also tends to underestimate the cost of providing services to those it classifies as normal. The neurologically normal person is actually nothing more than a figment of society's imagination; as shown in
this mathematical proof, a person's chance of being psychometrically normal (that is, within the normal ranges on a set of standard psychological tests) is only 1 in 10,466. Nevertheless, the prevailing assumption is that most people are normal and self-sufficient and can fend for themselves. So there's no attempt made to determine what unmet needs they may have as they go through their lives... and large numbers of "normal" people end up struggling with confusion and anxiety, coping with their problems by drinking themselves into oblivion every Friday night. Because they are "normal," their problems are blamed on their own character flaws, rather than being viewed in terms of a failure to provide services and accommodations for their individual needs.

If we acknowledged that just about everyone could benefit from more services than they're getting, that would go a long way toward reframing the issues associated with disability services. For instance, one of the main areas of conflict in special education is the reluctance of many schools to provide an aide to assist a child in the classroom. Because it's expensive to hire an aide, the autistic child is seen as a burden to the school district. A more accurate way of looking at this situation, though, would be to recognize that today's schools are grossly understaffed and that every classroom ought to have at least one aide.

Many years ago, when children attended one-room schoolhouses, the older children regularly helped to supervise and teach the younger ones. As education became a standardized service provided by large bureaucratic school districts, each teacher was expected to be responsible for a classroom of 25 or 30 students, with no help at all. For a long time, the educational bean-counters managed to get by with this meager level of staffing because there were no laws against disability discrimination. If a child needed more attention than the teacher was able to provide, he could simply be expelled, often with a recommendation that his parents send him away to an institution. More recently, the schools have resorted to drugging large numbers of students with Ritalin and other medications to keep them docile.

Our society does not have millions of defective children—it has a defective educational system that is designed to do everything on the cheap, that treats parents as adversaries instead of customers, and that is incapable of meeting the needs of a diverse student population. Here's my prescription for change: Big hefty vouchers to fund adequately staffed schools and enable families to choose the environment that best suits their child's needs.

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  • Interesting post! (This topic is interesting in general.)The reason I brought it up is that I use a service dog. A service dog is DEFINED as one whose trained tasks mitigate a disability. If autism is not a disability, I would not be disabled by it, and all of the tasks he performs for me related to autism (waking me up on time because I cannot hear the clock, getting me out of overstimulating situations, refocusing me when I 'tune out' in the middle of doing something, etc) become parlor tricks- and I lose my right to take him in public.

    A service dog is different than other assistive tech because a text-to-speech thing doesn't have any rules regarding who can use them. Dogs in public, however, do.

    there's more to this but I'm having trouble keeping what I want to say straight in my head so I"ll stop there.

    By Blogger Unknown, at 6:04 PM  

  • Dogstar, when you take your service dog into a building, you're not expected to show your letter of diagnosis with its DSM-IV code before the dog is allowed to enter, are you? You just explain that the dog is a service animal. That wouldn't change if you did not have an official diagnosis. Allowing service animals in public places, without a rude invasion of the owner's privacy, ought to be just common courtesy.

    I'd like to see a society where accommodations were routinely made for everyone's individual needs, without dividing the population into "normal" and "disabled." Yes, there would be a few jerks who would want to take every sunny day off from work to accommodate their golf obsession; but if they got their work done at night, that would be OK, and if not, their failure to perform would be a valid reason to fire them.

    By Blogger abfh, at 7:27 PM  

  • Having seen many 504 plans ignored, I think the more we battle prejudice against special needs, the better off we will all be. Everyone should get what they need to be able to function as well as they can. The legalese that insists that disability be a medical issue not only gets in the wy, but promotes the idea that people who need something outside the "norm" of zero are somehow worth less than the "norm."

    Which means everyone is. No wonder depression is so rampant in our society.

    By Blogger Joeymom, at 8:28 PM  

  • "Everyone should get what they need to be able to function as well as they can."

    Does this mean that if Amanda baggs feels more normal on LSD that taxpayers should support her habit? I suppose we should buy drunks a couple of quarts of whiskey everyday too.

    By Blogger John Best, at 8:45 PM  

  • Fore Sam,

    If someone has a difference in neurology or metabolism such that LSD or alcohol increase rather than decrease their ability to function in society, why not?

    People with attention deficits have neurological quirks so that prescription stimulants increase, rather than decrease their ability to focus- are you against allowing them to take things like Ritalin and Concerta?

    By Anonymous Anonymous, at 9:12 PM  

  • Yes, I'm against Ritalin and Concerta. They only mask symptoms and contribute to suicide and other problems. They don't address the cause of the condition.

    I don't believe that anyone can increase their ability to function by using LSD. I suppose homosexuals who drank too much alcohol might find women attractive though, and that could lead to a cure for them.

    By Blogger John Best, at 9:32 PM  

  • ABFH- you don't have to show that letter to get into a building- but if it comes to a court challange, or you need to prove disability status for job accomodations, etc- you need that diganosis. Self diagnosis doesn't hold up well in court, and just plain old 'difference' doesn't count, legally, as disability, at least the way I'm reading the law. Currently, you must be disabled to have a service dog- period- and I don't see any wiggle room for that. If I'm not disabled by my AS, therefore, my service dog is not assisting with a disability, just a difference- and there goes my right to take him in public.

    By Blogger Unknown, at 1:30 AM  

  • I don't think abfh is saying that the priority should be to abolish diagnosis right now -- unless I'm misinterpreting, she's talking about working toward a shift in attitude such that the fact of your using a service dog due to your AS is considered no less "weird" than a left-handed person's use of left-handed scissors.

    People who don't need left-handed scissors simply don't use them, and people who don't need service dogs don't use them, either. In general, humans are "lazy" in the sense that unless something works well for us, we will not go out of our way to use it.

    What I think this post is emphasizing is the difference between saying, "Sure, it makes sense for you to use this resource because it meets your individual needs", and "Fine, you can use this resource because you are broken in some way".

    Obviously this won't be an overnight thing. I also feel that my diagnosis is necessary for me right now.

    But, bear in mind that you can still have something as a concept without having it be medicalized; autistics would still exist regardless of whether the diagnosis existed, just as women exist without the necessity of being pathologized as "defective men" (and receive female-specific health services, and are accommodated with female-accessible restrooms, etc.). Similarly, in a world where autism was not considered a defect, autistics would still have different needs than nonautistics, and accommodations could still exist.

    I don't think taking the diagnosis away would help matters right now, but in the long run, who knows?

    By Blogger Anne Corwin, at 2:08 AM  

  • Oh, and generally speaking, I see disability as being mainly the state in which a person's individual needs are nonstandard. It's a fallacy that nondisabled people have no needs; of course they do, they just don't get their needs scrutinized and pathologized all the time. The needs of the majority tend to fade into the background of most people's perception, but that doesn't mean that the needs aren't there. I mean, if nobody drove cars, we wouldn't need roads or road signs -- think of how much those things cost taxpayers every year, including those who don't drive?

    (And yes, you could say that the cost of roads and road signs is justified by the fact that people need cars and roads to get to work where they can earn money -- but the same exact argument applies to ramps for wheelchairs, and sensory-friendly environments for autistics!)

    By Blogger Anne Corwin, at 2:12 AM  

  • annec- true, but there's not dumb folks who think using left handed scissors is 'cool', nor are their badly-made left handed scissors that cause disruptions in public places. Lots of people who don't need service dogs think it'd be fun to take their pet places, and don't get the amount of time and training that SDs get to be well behaved in public. They cause a LOT of problems for legitimate SD users, and the abuse of the 'honor system' that we currently have (no certification or proof of anything required for PA) is a real hot button issue in the service dog community, where I'm a lot more active than in the autism community.

    I'm told (because I asked my super-special brilliant friend Kirsten from SDC) that it doesn't matter if it's CALLED a disability or not, if it is a physical or mental impairment that limits one or more major life activities, it counts. A letter of diagnosis, for example, would be documenting an impairment- it's the impairment, not the diagnosis that's important. That makes me feel MUCH better. Sometimes I worry that the emphasis on 'different, not necessarily worse' is a little like shooting ourselves in the foot.

    By Blogger Unknown, at 3:47 AM  

  • Lots and lots to think about here! Great post!

    By Blogger Attila the Mom, at 7:33 AM  

  • There's a recent post on Andrea's Buzzing About that discusses a proposed change to US disability law such that a person could be protected from discrimination without having to prove that his or her condition limits a major life activity.

    By Blogger abfh, at 10:00 AM  

  • John, I was thinking more of things like effective educational strategies and sensory accomodations. Whether illicit drugs would need to be included in that, I have no idea. I am fortunate enough to have a child who currently does not require medication. However, allowing him to have chewing gum before he melts down attempting to focus on a task would be very nice.

    By Blogger Joeymom, at 10:45 PM  

  • Regarding the service dog issue...

    There's a thing called, I think, a Canine Good Citizen Certificate. It's a certification that a dog can get after passing a set of tests to prove that it knows how to behave in public.

    It would make sense to me for any dog with that to be allowed into public areas, as an alternative to having to be certified as an assistance dog. Similar certification could be given to other animals, too. (Seeing-eye horses are pretty cool!)

    By Blogger Ann, at 12:31 AM  

  • ann, the problem is, the CGC just isn't strict enough to use for that. I can usually put a CGC on a puppy under 6 months old with less than 2 weeks of training. Mal could have done it at 4 months with ease.

    Seeing eye horses have some major issues and there are people who fake seeing eye horses too- we have one who is a consistant problem in Fort Worth- her horse isn't a mini and she rides the darn thing and it's not housebroken and she keeps it IN AN APARTMENT. I'd hate to be her landlord, they've spent a ton trying to evict her. - Cait (signed in on her work email)

    By Blogger Cait, at 11:10 PM  

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