Special needs, cures, and the rest of it…

So. There’s been a lot of talk in the special needs world recently about the potential new cure for Down Syndrome. And a lot of parents are saying they don’t want a cure, because their child’s disability is such a large part of who they are that, were they to be cured, they would no longer be the same person. I kinda get that, but:

At the same time, they ask us not to define their children by their disabilities. To use person-first language. So why are they allowed to define them thus? There are even those who claim that the very search for a cure is “ableist”… But aren’t there a host of medical problems associated with Down Syndrome? Isn’t the average life expectancy shorter? Doesn’t it make life more difficult in many ways – even excluding all the difficulties that could be ameliorated by a more inclusive / accepting society?

And, speaking of society, is it completely wrong to consider the greater good? (The debate over the desirability of a cure has spread beyond Down syndrome.) What I mean is, people with special need carry a cost. A medical cost, an educational cost, an assisted living cost (as the majority can never become independent). I don’t begrudge them this cost, but we do not live in a society of infinite resources: every dime spent on people with special needs is taken from elsewhere.

As I said before, I don’t begrudge them this cost. Anything else would mean living in a society where it is acceptable to class people as “less than human”. Historically, this has always led to atrocities of the worst kind. However, if some of the expense could be avoided by a cure, which, at the same time giving people what, to my mind, seems like a better quality of life, isn’t it wrong to avoid it, nay, even to fight it, because it threatens one’s sense of identity?

Of course, this is a very tricky question when talking about people who have been living with their disability for years. Of course it has shaped them and influenced who they are to a large extent. Of course the thought of such a large change would be intimidating and distasteful to some. I mean, my sister refuses to have her extreme myopia corrected by laser surgery, because it would completely change the way she experiences the world, and because it threatens her sense of identity. But when we are talking about very young children, or babies yet to be born, does this – should this – still hold true? Would the people who do not desire a cure for themselves wish their fate on other people?

In some cases, it seems to me this has more to do with the parents’ – primarily the mothers’ – identity as Special Needs Parents. A breed above the rest, unsung heroes fighting adversity in an unfair world. Again, this is something I can understand, but is it fair to the child?

I have read of several young adults with Down Syndrome wishing it away. Of course, a large part of it has to do with the way society treats them, makes them feel that being different is a bad thing, ridicules and excludes them. At the same time, another part of it is them themselves seeing and resenting their limitations, seeing and resenting how much more difficult and frustrating even the most simple tasks can be.

My other sister has Asperger’s (or, as she puts it, she’s an Aspie). This has shaped who she is to a large extent. Do I wish her cured? No, I, too, am scared that a cure would turn her into a person I don’t recognize. Do I wish she had been “cured” as an infant? Well, it probably would have avoided years of misery and a suicide attempt, so yes. Definitely yes.

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About elpapad

I'll get around to it at some point...

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