aluisha wrote:
Lucky you. I can't help but be extremely focused on how few - how low a percentage of asd's this is - that there is a positive outcome. Please - tell me I'm wrong.
What's a positive outcome is usually determined by the standards of nondisabled people. Often the actual disabled people have a very different view of matters. (Although since we live in an ableist world, most of us internalize at least some of the idea that a negative outcome is any outcome that differs significantly from a nondisabled person's ideal of a perfect life.) Also determined by people of a certain culture -- in many cultures "independence" isn't prized the way it is in the "mainstream" of the USA and several related cultures. Much of my family seems to have done fine with interdependence and not been ashamed of most of our issues even though most of us qualify as disabled in one sense or another (from what most would consider "mildly" to "profoundly" depending on the person and what time of their life). Not that we have exactly one point of view on it, but that we don't always see it the way it's seen in mainstream American culture, for some reason.
Speaking for myself, I have what would normally be considered an extremely negative outcome. That is, I need some degree of help with every aspect of daily living skills, and most often just need them outright done for me. (The best I can do is do something if someone hands me all the things to do it with, and that's never something I can manage all the time, given that I have "autistic catatonia" which often prevents me from doing
anything at all.)
However, I consider my "outcome" just fine because I don't happen to think that being disabled is the end of the world, whether it's mildly or severely in the eyes of the public. (In my case it'd be considered severely, given that I can rarely even get out of bed for longer than it takes to get to the bathroom and back -- I have other issues in addition to autism as well, but even autism-related issues don't have me much better than that. I don't like putting autism in terms of mild and severe or HF and LF, but my doctor keeps writing severe on my paperwork regardless of my views, and that's how most people seem to perceive me.) I'm not the type of person who prizes an illusion of independence over all else. And I feel this way even at times when I'm unable to communicate, and even though the future might hold a situation where I'm rarely if ever able to use language for all I know given that my autism-related movement disorder is progressive so far.
I just don't happen to have mainstream values about what a positive or negative outcome is. To me a negative outcome is one where a person is unhappy, regardless of whether they need constant assistance or live what most of the world calls "independently". (Nobody is truly independent. We're all interdependent. Compared to most people, even the most extreme impairments don't cause
that much more dependence on each other than most people already have. It just looks that way because societies don't plan for people like us. When people depend on others for a thousand things, what's another fifty or so?) And to me a positive outcome is when someone is happy. And that's happy measured by their own standards, not others. (Some really ridiculous quality of life measures don't measure whether the person themselves is okay with their life, they measure how "independent" a person is. Which is... just ridiculous as a measure of something that's inherently subjective. When controlled for that, most disabled people rate our quality of life the same as others, and if we became disabled after being nondisabled, then after an adjustment period we rate our quality of life approximately the same, sometimes slightly better, after we become disabled, as it was before.)
I'm both a happy person (one of my definitions of a positive outcome) and when I was unhappier, I didn't consider the source of my unhappiness to be being disabled (another of my definitions of a positive outcome in terms of disability). Nobody else gets to define a "positive outcome" for me based on what I can and cannot do. Many of the most miserable autistic people are those who are "fully independent" by most people's definition, and yet live lives so filled with the stress caused by overworking themselves to "overcome" their impairments, that they end up completely overloaded, overstressed, and unhappy. That's a high price to pay for a so-called "positive outcome". But really there are both happy and unhappy people at all "levels of impairment" among autistic people and other disabled people. You can't determine how positive a person's outcome is just by what they can and can't do, even if that's how (biased, ableist) scientists tend to do it.
Oh, and while I understand the meaning of pride (in the context of "not ashamed") and have used it that way before (both about "disability pride" and "gay pride"), I tend to avoid the term these days because of how confusing it is for a lot of people especially those who take words literally. Basically I have no particular desire to become nonautistic (or for that matter nondisabled in general, although there are particular conditions I might not want but even that's not always high on my priority list compared to other issues). I really dislike the whole idea (that seems to be put forth both by many proponents and opponents of the whole "autistic pride" idea) that being okay with who you are is only okay for those considered "mildly disabled" by the world. That's not what I'm generally considered and I'm fine with who I am, at least in terms of how my body (including brain) is constructed. (I of course, like everyone, have plenty of room to grow and change. That has nothing to do with what I mean when I say I'm okay how I am.) While I dislike "models" in general, the following is the "model" of disability that is closest to how I see it:
http://still.my.revolution.tao.ca/radical
That means I get irritated by people who go "I'm okay with autism because autism isn't a disability." Nope, sorry, try again, that kind of idea harms other disabled people. It also means I agree with the following said on that page: "To us, disability is not a point of individual or social tragedy but a natural and necessary part of human diversity. The tragedy of disability is not our minds and bodies but oppression, exclusion and marginalization." That's how I can have the views I have even though I have the kind of difficulties that normally are considered to prove that people shouldn't have the views I have.
So I don't necessarily agree with the OP's point of view (I don't know enough about it to say for sure, but it's quite probable that I don't), but I also probably don't agree with yours either. I'm one of those weird people who doesn't like much of the "autistic pride" stuff because it's so often ignorant of what the positions taken mean to other disabled people. However I'm also not one of those people who thinks people who don't agree with me are evil (whether they don't agree because they do the "autism is not a disability and that's why I like being autistic" thing or because they do the "autistic people need to be cured because of the misery it causes" thing). I like, and sometimes work alongside, many, many people who don't agree with me on much of anything related to all this.
_________________
"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams
08 Jan 2011, 7:05 pm
