I asked Forrest for permission to write about him on this blog. Of course he said yes, eventually. It was sneaky of me I know. As his mother I can get his consent for almost anything depending how I ask.
“Can I use the word retarded?” He grunted with a scowl.
“Special Needs?” A bigger grunt and a head shake.
“Developmentally Disabled?”
“Nuh uh.” He can’t pronounce that one anyway, nor can I for that matter. It seems to roll out of my mouth in a blither. Forrest is not happy with my questions. He prefers to not discuss his Down Syndromness. But I want to be able to use the word “Retarded” and get his okay. So I do the mother thing:
“I use the word “retarded” because it means slow and beautiful, just like you Forrest.” I do feel a twitch of manipulation here. I am a bad mom sometimes.
“Oh. Okay” he says with a renewed happier tone. Then, “how about love?” he reminded me.
Oh yes, that is classic Forrest.
Whew, that was close. I guess I’ll keep the blog name “Retarded in Portland” for awhile then.
When he entered high school, he was put in a “Life Skills” class for moderate to severely retarded kids 14-22 years old. It was his first non-integrated school experience and it was very upsetting for him. His first day he saw, for the first time, a kid who had seizures once or twice a day in front of him. There was a girl who wore a helmet and who’s face was malformed and screamed when she was excited. A kid with Prader-Willi Syndrome who stole his lunch and wolfed it down before anyone could stop him. The other “special needs” kids had speech patterns that he couldn’t understand. This was a big shock. These were his new “friends” and he wasn’t allowed to leave that room without an “aide”. He developed behavior problems. He came home with bad habits, like pulling his hair out in one spot, making loud squeaky noises, and he began throwing things in anger. He refused to be a part of the group and referred to the kids in his class as “those pathetic people”
I asked him then, at age 16, what was his preferred label for “developmentallydiballebbblah”. He thought about this for quite some time. Back in the 70’s the term we used was “MR” (mentally retarded) for a putdown. Now they used “DD” or “Speeeeeeeecialllllllll” with that mocking tonality. Today I think “Cognitively disabled” is the acceptable term du jour. And you and I are “typically developed”, as in not retarded.
Finally after pondering all the options, Forrest requested that his disability status, when needed, be referred to as “Super Hero”. Works for me.
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My son's still mad about his intake interview at Development Disabilities in December 2009. When we asked near the end of the interview whether high-functioning people with autism, like my son, qualified for services, the case worker said, "Basically if he functions like someone who is mentally retarded, then he's qualified." My son got that horrified look on his face that I have learned to recognize, the one that says, "I don't want to be here." A month later, he still mentions it.
ReplyDelete(I just read this comment to him before posting it, and he said, "It **still** pisses me off that she would say something so rude!")
I imagine Aaron as living in between the worlds....creative, social, loving, deep souled and caring....and not quite enough world savvy to function independently. He isn't "retarded enough"? How ironic. Maybe he is isn't sly enough, competitive enough in the right ways, or just too in the present to function like the others? He is just too darn authentically sweet. He obviously didn't fit into that social worker's box of who needs "services"....but wouldn't any trained social worker know that telling a young person who has worked incredibly harder than most to graduate high school, who fought against the painful stigma and harassment of "special ed", should NOT be told that now, as a young adult, he needs to be more mentally retarded to qualify. How can he digest that? I'd still be mad too.
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