posted May 18, 2009 at 1:25pm
Scrolling through Facebook the other day, a status update caught my eye.
“crowd question: so what’s a disability snob?”
I can’t call the poster a friend, though we are, obviously, Facebook friends, and I’ll hasten to add that she seems like a cool person — one of the moms I’ve “met” virtually since joining the Down syndrome club. I didn’t stop to read the comments (and there were quite a few) — not for lack of time, but because I couldn’t bring myself to look.
“Really?” I thought. “Are we there?”
I knew what she meant even before I went back a couple days later to read the comments. She meant a hierarchy of disabilities — as in, “My kid’s disability is better (or worse, I suppose it works in reverse) than your kid’s.” Not that she or anyone actually puts it that way in the stream of comments, or claims to feel that way.
The whole thing has shaken me because at the same time I’m completely disgusted, I also can’t look away. Or stop thinking about it.
Am I a disability snob?
When Sophie was born, someone told Ray that Down syndrome is the “Cadillac of birth defects.” Almost 10 years later, I’m still trying to figure out what that means. I can guess. I know the stereotypes associated with Down syndrome. I also know that Sophie fits some and not others, that she is a person both defined by her disability and so totally not defined by it. But yeah, of course, defined by it. Totally. To say otherwise is to tell one of the pack of white lies we tell ourselves all the time, just to get from one end of the day to the other.
Am I a disability snob? I am a Sophie snob. I’l admit that. And you’ll have to excuse me if I admit that I’m not sure how I’d handle it if she had some other chromosomal composition or a different kind of a disability; you’ll have to pardon my honesty because the truth is that I don’t know. Just like I had no idea — never even entertained the idea — of how I’d react if I had a kid with Down syndrome.
I don’t think most of us go there. Oh, we do now — at least I do, I’ll admit that, too — now that I’m in the club. Do I stand at Special Olympics cheer practice and watch the other participants and wonder what it would be like if that girl was my kid, or if Sophie will be like that woman when she’s older? You bet. I wonder about their diagnoses, what it’s like to have that diagnosis. And when it’s a person with Down syndrome, I study that person, trying to figure out how Sophie compares. How she ranks. All the fucking time.
Does that make me a disability snob? Maybe. I’m not interested in trading Sophie in. We’ve made it this far together. I’ve kept her alive; her head fits perfectly against my chest at night when we watch TV; I won’t let anyone else (ok, my husband) kiss me on the lips. I adore her, including the idea of her. (Which is not to say that we don’t have our tribulations — or that I’m not terrified about the future, for both of us, for all of us.)
I’m partial. But a snob? I’d like to think instead it makes me another insecure mother, shaken by the universe into never taking anything for granted again.
I’ve spent the last couple weeks doing some really intense interviews for a story for my day job; I’m profiling a woman who became a paraplegic after she was shot with a gun. The other day she told me that after her injury, she would sit in her wheelchair and stare into the depths of the swimming pool, thinking about how to get herself to the bottom of it. When she wasn’t doing that, she spent hours considering which horrible health conditions she’d be willing to trade the universe in exchange for her spinal cord injury.
Is this woman a disability snob?
Why even go there? This woman doesn’t; not so much, not anymore. She suffers almost constantly from pain — phantom pain in places where her body isn’t supposed to feel it anymore — and she’s found that the only thing that makes it better is to keep busy. (Lucky for our community, she’s chosen advocacy and she’s damn good at it.)
I know how she feels. As we filed out of Special Olympics cheer practice last Saturday morning, I heard the other moms and dads murmuring to their children, urging them to hurry. “We have so much to do today!” one said and I thought, “Yeah, just like us,” then paused to think about how much of what we do all day is manufactured — classes and clubs and activities to fill the hours, to numb the pain.
Hey, when all is said and done, aren’t we all just trying to get by in the world?
The questions remain unanswered. Just what is a disability snob, and am I one?
I’m sorry, I really can’t answer. I’m just too busy to say.