Thursday, September 04, 2008

We're Not Potted Plants

I'm getting damn sick of this meme that Sarah Palin is some kind of saint for choosing to have a baby with Down Syndrome even though apparently most people choose not to. Some people are even going so far as to label this phenomenon a new form of eugenics, and assuming that it's entirely predicated on how much the prospective parents think the potential baby would be "worth," whatever the hell that means.

Did it ever occur to you folks that maybe, just maybe, prospective parents of disabled children (who will most probably grow up to be disabled adults) look around themselves and see what a horribly ableist society this is, and how hard it is for parents -- even Canadian parents with single-payer healthcare -- especially rural, low-income, minority, or otherwise disadvantaged parents to access the kinds of services and support they need to do the job of raising a disabled child properly?

Shark-Fu's recent post at Shakesville contains a really telling anecdote about her highly autistic brother:
My mother dedicated her life to helping my brother find a way to cope in a world that isn’t tolerant of understanding of difference. I watched as she sank deeply into a depression that, sadly, she has never fully recovered from…all because she couldn’t find that cure or treatment that would fix my brother. ... And I know this one true thing…my brother is now in residential treatment and it takes a rotating staff of eight people to do what my mother did for the first 13 years of my brother’s life.
Not every parent is going to be in that situation. I never needed residential care, and it certainly doesn't take a staff of eight to maintain me (although I'd really like a staff of eight just so that I could get some stuff done for once, but who doesn't?), but. Even with a kid who's about as non-handicapped as it's possible for someone with a disability to be (thanks, doctors!), my mother put in a lot of work of the sort that parents of able-bodied children never have to do. One story that sticks in my mind is her account of when I first got my diagnosis, in the mid-1970s. Apparently a doctor came into the room where she was waiting, made some kind of pronouncement in medical jargon which Mom didn't understand at all, and then turned and went to walk out. Mom, showing the first traces of the deep steel spine she's had to grow (largely because of me!), grabbed the doctor by the collar and demanded that he sit down and talk to her in plain English until she understood what was going on. (Go Mom!)

I'd also like to, if I may, drive a 1979 Impala over the idea that handicapped people are special and better and maybe even morally superior because we exist to teach able-bodied people about tolerance and suffering and patience and keeping a good demeanour under adverse circumstances. How self-centred can able-bodied people be?! We're not angels or saints (and neither are our parents, goodness knows); we're human beings.

Although I know I'm irrevocably putting myself in the "One of Those Ones" category by saying this, because I'm angry about it, disabled people are not about you. We don't exist for your edification. We don't exist to give you moral lessons. We don't exist to make you feel morally superior, either, so knock it the fuck off right now. Please stop appropriating our bodies for your misguided cultural narrative already. (We're also not potted plants, and if you want to be involved with disabled people, children in particular, strictly because you feel an urge to fix something, please, for the love of squid, take up gardening. Or go volunteer for Habitat For Humanity or something.)

While I am firmly behind the idea that the disabled experience is a valid, and above all, human experience like any other, I'm getting the distinct impression from some people that they see it as a more valuable human experience than some. What is with that? It is not all sunshine and roses out here, folks. As you can see from some of the links here, it's often more like thunderstorms and thorns.

That said, I'll also add that I'm firmly in favour of anyone making the reproductive choices they feel are best for them and their families, including having abortions for any reasons.

You may have doubts about your ability to properly raise a child with a disability. Okay, that's honest. Good for you. It's a lot of work and shouldn't be taken lightly.

As I've pointed out, even the best possible life for a visibly disabled person may not be the life you envisioned for your kid once they've grown up (and kudos to parents who think that far ahead!).

That's fine with me. Every child a wanted child, even the disabled ones. Also, speaking purely from my point of view, I don't want anyone to carry a pregnancy to term when they don't want to for the same reasons you don't want me doing your accounting -- I'd suck at it and hate every minute of it.

Not being an adherent to cultural Calvinism, I'm not into the idea that the conservation of misery is a good thing.


Blogger aimai said...

Stunning post, Interrobang. Really stunning. Your story about your mother and your doctor reminds me of our family story. When my mother began to suspect that there was something wrong with my five year old sister--it later turned out that she had some form of fatal cancer--the doctors including *her pediatrician* the actual T. fucking Berry Brazelton accused my mother of causing the headaches that were the symptom with her "cold" and "unfeeling" parenting, or in medical speak "shut up you crazy mother you, there's nothing wrong with your child."


2:39 PM  

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