Thursday, October 26, 2006

Letter to the Next Generation of Disabled Kids

To the Next Generation of Disabled Kids:
You may have a lot of struggles ahead of you.
I hope you don't. I'm trying my best to make the world a better place for people like you. I know many others who are working for that too. But there's a lot to change, and others are trying to make it worse for us. Many of you may not even get to be born because of those people. Others may be killed or denied the things that could save your lives.
I hope you never feel like you don't belong. Even if you are one of a handful of people like you in the world, even if they haven't found anyone else like you yet, I hope you feel welcome with people who are different from you. You will probably figure out eventually that you're not like most people. But I hope you will not be taught to think of your difference as a bad thing.
I hope you get what you need, even if your needs are unusual. I hope you never have to deal with being told that since you don't fit certain narrow criteria, you can't have the needs you have. I hope you not only get what you need to survive, but also what you need to live a good life. I hope people realize that there are many different ways of living a good life, and that everyone can have a good life if they get what they need.
And I hope you are allowed to be yourself. There are many ways of being a wonderful person, you don't have to be normal. I hope by the time you're born, people know how to accept a person for who they are, and see the beauty in that. I hope your parents don't keep longing for you to become a child you are not, a child they hoped to have.
If you don't have that, I hope you realize you deserve to have all that. I hope you realize that we can get there, with enough work. You may not live to see that day, but the next generation can take up the work. And fighting back is good for you. It means you challenge the assumptions that label you as a damaged person, and realize you are whole. It means you fight the 'outposts in your head' that society makes, and destroy them one by one.
And I hope your parents support you in that fight, like mine did. If they don't, I hope you find others who will support you. The fight is easier when you have allies, someone to stand up for your rights and help you heal from your wounds. Because though the fight is good for you, it can also wound you deeply. You need someone who will help you heal so you can fight again.
I hope you remember the dream of a world where people like you are accepted. Don't accept the world as 'good enough' if it isn't. Some people might say the work is done, like they've said to women and non-white people, but while people are still treated as inferior for being who they are, the work is not finished. No matter how they hide their views in clever disguises. Disguised injustice still hurts, and it's harder to spot, harder to fight.

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Tuesday, October 03, 2006

Individualism and the Two Disability Stereotypes

I think there are two main disability stereotypes, which I call the able-disabled and unable-disabled. The able-disabled is the person who despite their disability, can do X, Y and Z, who overcomes their disability to do those things, while the unable-disabled can't do those things and lives a miserable, limited or otherwise pitiful life. Our society has a tendency to split people up this way.
When I try to think of examples, I think of specific people for the able-disabled stereotype - Hellen Keller, for example. When I think of examples for the second stereotype, I think of generic groups - low functioning autistic, for example. Why is this?
I think society, when looking at people viewed as able-disabled, view them as unique and special individuals, who have individual qualities responsible for their success. They are the exceptions. Some say these special qualities are modifiable, others don't, but in any case this person is special, and not just as a euphemism for disabled.
However, even if they describe a specific person for the unable-disabled stereotype, the person is not viewed as individual but as representing a group. They are an example rather than an exception. So the person themselves is not considered important, rather they represent a group of people. Also, the focus is mostly on their disability, and if they mention personal qualities thought to be separate from the disability, it is in terms that suggest shades of the able-disabled portrayal (since the same individual is often described in both ways).
An example of this shift is with many parent descriptions of disabled children. I often wondered why certain behavioral traits were in among the various health problems and such whereas others were at the end. The reason is that they are viewed as problems due to the disability, or as positive traits despite the disability. Here's the typical format:

My child has X. I thought things were fine until [xe regressed/xe was born not breathing, or funny looking, or whatever/xe was X age and not doing Y] Currently, xe has T, U, V, W, X, Y and Z. All that makes it sound really bad, but xe [is a wonderful, happy person/can do X, Y, Z/has taught me so much/has greatly enriched my life].

Basically, it starts out describing the child with the unable-disabled format (which is the basic format for describing disability) then at the "All that makes it sound really bad, but" they switch to the able-disabled format. The specific order may vary, but it's remarkably similar. Parents often don't consider the able-disabled exceptions as such, but as exceptional, relative to most people (which is often described as rubbing off on siblings, parents (though they'll often give examples of why they're not perfect) or other people who know their child.
In that framework, it seems to me that often person-first language is intending to encourage an able-disabled view of disabled people, where the disability is peripheral. But why can't the disability be central without viewing the person as pitiful? For example, why split up behavioral traits into bad, disability related things and good, individual qualities?
When I look at behavioral traits, I often forget about good or bad and just accept what is without value judgements. I don't wonder if the hyperactivity of the Rett girl I work with is good or bad, or assume it is bad, but just think of it as a trait I have to plan for and react to (for example, by recognizing that being with her is tiring and not planning for strenuous things right afterwards).

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