[I wrote a slightly less polished version of this in German for class last week]
I’m talking with a friend, and it’s going well. She wants to know what I did over the summer. Because I trust her, I tell her that I volunteered at a program for autistic kids.
Her eyebrows go up like she’s watching a sad movie. “That’s so heavy!” she exclaims. “Was it really hard?”
I don’t know what to tell her. I try to explain that being autistic isn’t a tragedy like people think. I tell her that the kids are still kids, that actually the hardest part was getting along with my co-workers. But I didn’t like her breathy “that’s so heavy!”, so there are some things she doesn’t get to know. She won’t find out that when I was a kid, I went through the same program.
A lot of people think that autism is a tragedy. Some say it’s so bad that we have to find the genes, we have to prevent it. They say that autistic kids ruin their parents lives, that autistic adults ruin their own lives. They think that the world would be better without autism. Without us.
People say, “You don’t seem disabled.” But they always have an explanation for why I’m so different. “You don’t seem disabled,” they say, “but you do seem kinda weird.” Or “you seem shy.” “I thought that you were just really sheltered.” “I thought that you were from another country.” “I thought you were on drugs.” People make up lots of explanations for me. Autism is never one of them.
Lots of people don’t want to think about disability, about autism. They’re afraid of these things. They think that disability is the same thing as sadness. That autism is so heavy. They don’t want to change their minds.
“You don’t seem disabled.” “I thought it was something else.”
Of course you did.
“What did you do over the summer?” another friend asks.
“Not much,” I say. “How about you?”
Friday, September 17, 2010
Labels: cure, friends, passing, stereotypes, the right to exist
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As a fellow person with autism who works with people with autism, I just wanted to say thank you for articulating my experiences so clearly for me. Now, the next time someone says, "There must be a special place in heaven for people who do what you do," I'll have something more to say than, "It's not really like that . . . "ReplyDelete
Thank you so much for your comment! I'm always glad to learn that other people are thinking the same thing I'm thinking about something.ReplyDelete
"Special place in heaven," ugh. I'm sorry anyone would say that to you.
As a parent of an autistic child, I think you offer a lot of perspective. And actually, though her diagnosis was not easy, I don't think we ever thought of her as a tragedy. I do think it was a shock. And the future was looking really uncertain for our baby. Which is, yeah, a kick in the head.ReplyDelete
But ... but... cure? No. I think it's part of who she is. I think things she can do (that many others can't), and the things she can't are part and parcel and if you take one thing away, you may just take it all away. Are there things she needs to learn...yep. Are there things I won't worry too much about... also yes. Are things easy? Not by a long shot. Nothing good ever is.
Lissa, I'm always glad to hear from parents who are taking a non-catastrophic outlook on their child's diagnosis. I'm glad you support your daughter to be who she is.ReplyDelete