3:19pm November 22, 2010

Why I try not to read stuff by families/staff of people with developmental disabilities

It is very hard for me to read things even by many of the better parents, siblings, and professionals of people with developmental disabilities. Like it takes being exceptional (compared to the usual anyway – shouldn’t be exceptional) before I can stomach it. Which often makes me think there is something wrong with me. After all, people shouldn’t be in a vacuum of only those like ourselves, that is dangerous more than ever right now. So without suggesting that as the solution, here’s why I can barely stand it.

The most obvious stuff is not the biggest problem but I should point it out. There’s two main directions it goes in. One is cutesy euphemisms and romanticizing. Special needs, never really grows up, teach us all a wonderful lesson about humanity and what matters, innocent and pure. Then there is the more blatantly destructive stuff. Burden on parents, never would have let them be born if I knew, list the person’s weight and height and talk about how you can’t control him, talk about how sad and pathetic their life is and how much you pity them and yourself, etc.

But the stuff bothering me the most isn’t that stuff. It’s harder to put into words. It’s like even the people closest to the disabled person in question act like they don’t even know the person. Oh, they’ll defend them against bullies, hate to see anyone treat them wrong, love them in certain ways. But then they explain why they defend the person and it’s all WTF. It’s like either the person is pure and innocent, or living a life of hardships the bullies could never imagine, sometimes both. Or maybe because they will never really grow up. And just FFS. No. That’s not the real person you’re talking about, it’s someone in your head. How do I know this when I don’t know the exact person? Because the person in your heads are all descriptions of the same fantasy-person that all of society is taught. And just how can even those closest to the very real person all buy into the fantasy person? Not totally but it’s rare that I see anyone write about their relative without resorting to such stereotyping. But to point this out, well I’m suddenly the one doing something wrong, how dare I speak as a developmentally disabled person about how these stereotypes ruin our lives?

And the thing is. Okay. For more than half my life most of the people I have spent time around regularly are DD too. Because that’s what happens when you’re in the system. Which means I’ve known a lot of us on a fairly intimate basis. And. Just. Those things are not who we are. I know who we are. We are an extremely varied bunch of people. But all of us over a certain age are adults. We are as different from each other as nondisabled people are (with the exception that oppression gives us many shared experiences). And we are people. Not symbols. I wish I could tattoo into everyone’s brain the way I see us. Because it is unrecognizable as the same people that nondisabled people are always writing and talking about. Because I am looking at us from the same level. Not down from above. And it’s totally different. I’m not looking through a haze of pity and burden and caretaker angst, nor of the kind of discomfort that makes people put us on a pedestal to avoid thinking about who we really are. It’s not that I don’t see our impairments or circumstances but that I see them in the context of whole and unique people.

I wish this would change. I wish I didn’t have to fear using the kind of search terms on tumblr that led to this rant. But right now, it hasn’t changed nearly enough. People need to stop looking at us through pity and tragedy and burden and holy innocent and eternal child and “taught me soooooo much” and all the rest. It’s getting old especially from those supposed to be closest to us. Can’t we just be people???

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