21 December, 2009


Today my dad brought me to meet his friend who is on the board of a Down Syndrome organization and a music school for people with developmental disabilities (mostly Williams, I am sort of obsessed with Williams thanks to my crush on Jeremy Vest from How's Your News). It was really great to talk to her about disability stuff, and as with most things that are great there's not much to say about our conversation.

However, one thing kind of struck me (not really her fault, but it just struck me and made me think about a particular DD strawman). Basically I was talking about my experience at The School and how alienating it was for me as a person with ASD to see kids being corrected for stimming, talking weird, etc. I wasn't censoring myself because she mostly works with intellectual disability stuff, and that culture is much more comfortable with people looking and acting weird. (I think this is tied in with the whole privileging of ASD among developmental disabilities, and is an interesting example of how having higher status can make things worse for you in some regards; but I have a thousand words to say about that topic, so I'll save it for another post.) My frustrated spiel about The School kind of built and culminated in, "So, the thing is I'm interested in ABA, but if I'm applying to work at a school, how am I supposed to tell if they stop kids from flapping their hands or if they care about things that are actually important?"

My dad laughed. "Well, you certainly have an opinion," said my dad's friend.

She didn't seem offended or anything. But then she started telling me how they work on teaching the students at the music school to behave in a socially acceptable way. She said for example that when they have jam sessions at school, it's okay for the students to clap their hands and cheer for each other in the middle of performances; but when they go and play in other venues, they're not supposed to do that. The school tries to train DD people for careers in music and that kind of behavior will get in their way.

This seemed legit, but I didn't know how to process it as a response to what I had been saying about The School. Finally, I said, "Well, I feel like there's a difference between teaching someone to self-monitor, and just saying, 'You're not allowed to do this thing that you like to do,' because that just makes them dependent," and she said "exactly, self-monitoring is really important."


When I was at The School, I helped organize this directory of New York autism resources that they were hoping to give out to parents. When I printed out the final document (as Danny would say), I put an image on the title page, something I had found on Google which represents a computer term I don't understand:

When I look at this picture, it makes me incredibly emotional. It's so beautiful and that's just what I want for Danny and myself and other people with DDs. This picture makes me think of a time this summer when I got really lost in the subway system at night and I ended up having to ride all the way out to the Brooklyn Bridge and then come back. (I live in Connecticut so I was trying to get to Grand Central or 125th Street so I could go home). My phone was dead so I couldn't call my mom, and every stranger who attempted to give me advice made things worse, so I stopped asking and just gave up and decided to do things the longest way possible.

So I'm waiting for the train to take me back to Grand Central, and it's been a really hot day and I haven't had much water and in addition to screwing up my processing and getting me lost in the first place, this is causing me to have a headache. And I'm just standing on the platform at eleven or twelve. And I start moving my hand down by my side, back and forth, hard, really swinging it around. And the pain in my head goes away.

And I am thinking of Danny of course, because I saw him today; and I've been thinking how Danny will never get lost in the subway system because he knows it all. But also, as the pain stops, something I've only learned recently, that it really is okay to move my hands sometimes, and that it helps me a lot--I just think, shit, I hope that Danny figures out that it really is okay to move his hands, no matter what they tell him.

I don't have time to finish writing this and it's kind of fucking me up but basically the thing is, I'm a passing person with a DD so it just doesn't make sense to imagine that I don't understand the value of learning socially acceptable behavior and that I think it's a cool idea to encourage DD people to go around vocalizing and rocking back and forth in job interviews or at the movies. If/when I have a kid with a DD, I will of course advise my kid on what is prudent behavior.

But telling someone not do things that are good and/or fun for them, things they usually end up sometimes doing anyway, is just sort of ridiculous! And mean. And impractical. And if you have a school that is built on the principle that completely ordinary but odd-looking things are a Big Problem, then I have to imagine that you just don't think about developmental disabilities in a very practical way, and I have no idea what you would make of a person like me.

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