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.

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Tags: Filed under: Down syndrome by Amysilverman

7 Responses to “Are We “Disability Snobs”? Or Assholes? Or Just People Trying to Get Through the Day?”

  1. I suspect you questions are rhetorical, but I felt like chiming in.

    I think you are a mother. period. end of story.

    When you are with AB watching performances at her school don’t you secretly compare her to the older, less talented, more talented kids?

    as for manufactured business….i think we all do it to some degree, for some people I think it becomes a competition of importance. The more full our time is the more we fool ourselves into thinking that we are important and needed. If we aren’t busy then it means we must be lazy, dumb, inconsequential (fill in the blank with your favorite negative cognition).

  2. It surely provoked a lot of discussion! And perhaps that’s what it’s all about? It’s human nature to constantly compare and contrast, organize by various preferences and then add a dash of bias. We Love our children all of them. We don’t love other children/ people necessarily, don’t even like all of them. It’s the taking our reactions,feelings etc to our brains and then making consciously aware adjustments that raise us up, expand us, transform us if we are exposed and open enough.
    You are always too hard on yourself Amy…. You have a big heart with a sharp edged brain which takes you to a very aware place and then you worry.
    We all are in this soup together. Lots of ingredients :)
    Love this post.

  3. A provocative post, Amy, and another good one. Reminded me of a woman I worked with (yes in the DDC office) who was a disabled Vietnam vet. She had chronic back pain and other issues (some of which I wasn’t sure were related to her disabilities or were her natural personality) but she was a difficult person. We had an intern at the time who was a parapalegic, with limited range of motion in his arms. He was a great worker and very pleasant to be around (and went on to do great things in the community). We were talking once about what a joy he was to have around and the woman remarked, “I wish I were in his place. At least if I had a wheelchair, people would know I was disabled and they’d be kinder to me.” It struck me as an appallaing thing to say, but as I thought about it, it must have been frustrating for her. Maybe it goes beyond disability, because I think there’s such a thing as hardship snobbery–I have it rougher than you do. Your misery is not as great as mine. Being stranded on a cruise ship without running water is as bad or worse as being stranded in New Orleans during Hurricane Katrina. Wha?

    Then there is the natural inclination of mothers to always compare their kids to others, as validation that we haven’t screwed them up completely. Together it makes for quite the conundrum.

    Keep us on our toes thinking about these things, Amy. My brain thanks you :)

  4. I get what the woman Rosalie (BTW, Hi!) referred to was saying about the visibility factor of a disability. My own kid that I have snob feelings about has something that is only apparent to most people when he slumps over or drops to the ground and shakes like the Harlem Shuffle videos (still not sure how I feel about those). Other times the kid seems like a normal teenager (including the common stoner look of too many meds to control seizures). And like your interviewee, I often think about other issues we could be dealing with instead. There isn’t a lot that we’d be willing to trade for except maybe plantar warts.

  5. “…shaken by the universe into never taking anything for granted again.

    That gave me chills. Beautiful.


  6. Hi Amy! What a joy…I just drove my 14 year old daughter to school, and for some reason the universe had me listening to KJZZ rather than my usual dose of Stephanie Miller on 1480 AM…and all of the sudden, there you were reading your essay about Sophie and cheerleading! It was like an old friend just dropped in on me (I was in one of your Mother’s Who Write classes, about a zillion years ago), and I heard them mention your blog, so I ran in from my car and found this wonderful blog! I have a son, Seth, who is autistic and turned 18 last Saturday. I know exactly what you are talking about, and I KNOW I am a snob. Autism is like the new thing now, and with supposedly 1 out of every 88 kids being born landing somewhere on the spectrum (aren’t we all though???) it looks like it will be “the thing” for a while. I guarantee you I look at every autistic kid I see and think, Thank God I have Seth and not him! I know I am lucky in so many ways as he is such a sweetheart. Then there was yesterday. I was buying a few T-shirts at Old Navy and the boy checking me out was Jason, the oldest son of a very good friend of mine that died of a brain tumor two years ago. I haven’t seen him since the funeral, but we met when he and Seth were one and a half and we were in Mommy and Me Preschool at Beth El. Jason is adorable, and told me of the colleges he is hoping to attend next year. I walked out and got all teary…tears for the colleges that Seth will never apply to (but realizes that the kids his age are all going off to) and tears of realization that all of those boys from preschool days, whos moms have remained my friends, have never tried even once to reach out to my kid, to be his friend. It made me sad. I hope I am raising my daughter to be a friend to all, and based on her wonderfulness, I think I am. I could go on, but, yeah, I get it. And Sophie seems delightful, and you are Blog Queen of the World.

  7. Love this. Love the imagery- the daily ordinariness of Sophie’s head on your chest at night- that shouldn’t and isn’t taken for granted.

    When I hear that question I have always thought it was people with disabilities not wanting to be around other people with disabilities….hmmmmm…..

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