Friday, October 03, 2008

Special Accomodations and Proving Disability

It seems to me that a lot of disability accomodations go about it the wrong way. They have a certain thing everyone is supposed to do a certain way. When a disabled person says 'This is not fair. I can't do it that way' (or they can't do it as well as expected) then the system says 'OK, prove to us you are disabled, and we'll put you in a special category that get to do it a different way.'
There are several problems with this model:
a) it depends on labels and testing for disability. If you're undiagnosed or misdiagnosed, you won't get the help you need, even if you know that you need that kind of help. Even with an accurate diagnosis, you might not quite meet their criteria and still not get any help. (For example, some autistic assistive communication users have lost needed services because they now score over 70 on an IQ test.)
b) just because it's not as desperate for normal people as it is for you doesn't mean it wouldn't be helpful to them. Very often, disabled people can signal a problem that affects many people, simply because it affects them more. But if you single them out for help, the others with less acute needs for the same thing don't get it. For example, one study tested the use of voice recognition software to create 'subtitles' on an overhead as a professor spoke. This was intended for several deaf students as an adjuct to signed translation, but several hearing students also started looking at the display. Some people, like my mother, find it easier to understand text than speech, even though they aren't labeled with any disability.
c) it singles out the disabled person as a 'special case' rather than treating them as part of the group. Because there is no accomodation for differences except in extreme cases, other students may come to resent the disabled student for getting special bonuses (I remember how upset I got when the teachers let my CP classmate chew gum in class but wouldn't let me do it) or else pity them for needing those accomodations. Granted, there are many reasons for normal people to have negative views of disabled people, and changing this one thing won't eliminate that completely. But it will help.
What is the alternative? Make accomodations available for everyone, like they do with curb cuts, elevators and talking walk-lights ("the walk-light to cross college drive is now on. Bee-dup."). It won't really lower the quality of performance in a class if kids are allowed to type essays rather than writing them longhand (of course, they should all be getting practice writing longhand, too) or a professor passes out notes to their lecture to any student who wants them. In cases where there truly is a different need, such as teaching different subjects to a developmentally delayed kid than to their classmates, there are two options - either let people self-select which system to go with, or accomodate everyone regardless of labels (with this specific example, a system where children work on units and go to the next one as soon as they pass the earlier one would work well).
If we do it this way, undiagnosed disabled people will still get the help they need, disabled people won't be singled out as 'special needs', nondisabled people who'd benefit from certain accomodations (such as gifted kids) may be able to get them, and the time-consuming, wasteful and adversarial beaurocracy of determining who gets help will be eliminated. Even if we don't do this for every accomodation, we can do it for most of them and get similar benefits.

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Tuesday, February 26, 2008

Ethics of 'Mercy Killing'

Robert Latimer recently tried to get parole, but was denied because he showed no remorse. He's a man who locked his daughter in his truck and piped in carbon monoxide until she died. He freely admitted to doing it and has always maintained that it was for her own good. Why? Because Tracy had severe cerebral palsy.

Tracy could not speak and had minimal movement. At 12 years old, she was considered to be at the developmental level of a 3 month old. She had contractures and similar painful physical problems caused by lack of movement and spasticity. She'd received several surgeries. At the time of her death, doctors had been trying to convince her father to consent to her receiving surgery on her hip because spasticity had caused her hip to become dislocated. Her father felt that she would want to be put out of her suffering.

Let's assume we've decided that assisted suicide is OK (by assisted suicide, I mean a person specifically requesting and receiving assistance to kill themselves). Let's also assume that Tracy Latimer was indeed in significant pain. Did Robert Latimer do the right thing?

One big consideration when consenting to treatment (or lack of treatment) on behalf of someone who can't express their own desires is what you think they'd want. If you use the same standard for proxy consent to assisted suicide, then whether Tracy would want to live or die is a crucial question. Can you assume, based on her chronic pain, that she'd want to die?

I've heard of an autistic woman. Like Tracy, she can't speak. Like Tracy, she has chronic pain, due to a variety of physical problems such as migraines, hypermobility and a nerve problem causing agonizing facial pain.

Unlike Tracy, this woman, Amanda Baggs, can communicate her own desires. She types. Does she want assisted suicide? As she says in this post - no. Most emphatically no. In an earlier post, she stated that she didn't want people thinking of her as 'happier now' in an afterlife where she is nondisabled.

In conclusion, even if you support assisted suicide (I don't think I do, though I can't explain why), no one can make that decision for someone else. Robert Latimer, you have no idea if Tracy really wanted to die. You projected your stereotypes of what a life like hers was like, and made the decision for her. For all you know, she was silently begging for her life as you killed her.

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Wednesday, May 02, 2007

Is Autism an Invisible Disability?

It's said that autism is an 'invisible disability' because there isn't a distinctive autistic facial appearance, or some easily noticeable aid every (or most) autistics use, or whatever. However, it isn't always.
Firstly, some autistics present as very noticeably odd. Most people can probably tell someone is disabled if they are visibly stimming, have odd movement patterns and do not speak (with the exception of young children). Especially if, like many people who present that way, they have someone with them who is acting very patronizing and staff-like towards them. Some people describe this as 'looking retarded' which is probably what most people tend to think about someone who presents this way. If they can speak, but are doing so oddly, they may be considered retarded or 'crazy'.
Secondly, syndromal autism can be visible in the same way any syndrome is. Many conditions can cause both autism and a distinctive, unusual appearance. Some syndromes cause an appearance that isn't visibly odd, others cause one that is. I have a friend with a kind of syndromal autism, who has an unusual appearance and also walks oddly because of scoliosis and other motor issues. I think he's hypotonic, haven't been told this but he moves like a hypotonic person. Anyway, all those make it that, even if he acted fairly NT (which he doesn't) people would know he wasn't normal.
Lastly, if you know plenty of autistics, you can spot it even in 'mildly autistic' people. When I look at pictures taken of me when I didn't know my dad was taking a picture of me, my autistic mannerisms are fairly visible. The most obvious one, to me, is holding your arms up near your chest. CP people do this too, but it's different with CP - more stiff (I can recognize CP pretty well too). I just find that if I'm not thinking about my posture, very often my hands will be up near my upper body. This is only one example, there are others. It's like recognizing a person from a certain culture by their mannerisms (something I can't do, but lots of people I know can with cultures they are familiar with). My dad has noticed, for example, that Cree people sometimes point with their mouths.

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