What’s wrong with you? (The best conversation of our lives)

November 12, 2011

a series of icons depicting various disabilites, young children and a smiley face

image courtesy of hugovk via flickr

I am always aware of how people perceive my daughter.  Most adults smile at Chloe and talk to her like she’s a regular kid. Regular kids, on the other hand, are less reliable.  Parents of disabled kids live in fear of the day when that precocious five year old swaggers up and demands, “What’s wrong with her?”

Something like this happened to some friends of ours.  She and her son were in the grocery store when a little boy appeared in front of them.

“Why’s he in that…thing?” the kid asked, pointing at the wheelchair.

“You need to learn some manners,” my friend snapped, and pushed her son away.

Experiences like this break a parent’s heart, possibly hurting us more than they hurt our children, at least when they are young and don’t understand the degree to which they are different from other kids.

How can we explain that their very presence makes people confused, that for the rest of their lives, they will face stares and rude questions?

For a while, I assumed that when a kid asked me “What’s wrong with her?” I would reply that there was nothing wrong with Chloe.  But when I really thought about it, this seemed ridiculous.

“There’s nothing wrong with her” is exactly the stupid kind of adult remark that kids see right through.  Because there is obviously something wrong with Chloe.  A brain injury is wrong–one of the many things, big and small, chronic and temporary, physical and emotional, that go wrong with all of us.

One day, when Chloe was about four, we were at the grocery store.  Chloe was in her usual position, lounging in her wheelchair and surveying the world around her.  As we cruised past the bread aisle, I heard a small voice say, “What’s wrong with her?”

I turned around to see two kids, a tall black kid who looked about ten years old and a tiny blond kid, dressed in a basketball shirt that came down to his knees.  The blond kid hesitated before speaking again, and his friend stared at the floor, embarrassed.

“I mean, why is she in that wheelchair?”

I turned Chloe’s wheelchair to face them.  She grinned at them, and raised her arm in an awkward wave as I explained cerebral palsy.  “So her mind is just like yours,” I told them as they listened politely, “but it’s hard for her to make her body do the things she wants it to do.”

The blond kid nodded.  “So you mean she’ll never…” he paused again, as if he wasn’t sure he wanted to ask his question, and my mind raced, wondering what he was going to say.

She’ll never go to college?  get married? have a job?  Of course, I would tell him she could do any of these things if she wanted to.  I wouldn’t admit they were questions I wrestled with every day.

He took a deep breath and finished his question.

“She’ll never run track?”

I grinned.  “No,” I admitted.  “She probably won’t run track. But then, lots of people aren’t that good at running track.  I can’t run track.”  The boy gave me a pitying stare.

“You know,” I continued, “Chloe’s not the only person who has challenges. Everyone has something that’s hard for them.”

The other kid smiled.  He had been standing there quietly the whole time, and now he held up his right hand, which had been out of sight behind his back.

“I’ve got this,” he said.  His hand was very small, and some of the fingers were missing.  The fingers he did have looked incomplete, and they were fused together.  The skin on his hand and across his wrist was tight and shiny.

“Exactly,” I said, and we grinned at each other.

The blond kid thought for a minute, trying to pinpoint his most impressive disability.  Finally he looked up.

“I’m short,” he declared.  He was short, about half the height of his friend.  Before he started talking, I had assumed he was younger than the other kid, but now I figured they were both about ten.  The track thing was making more and more sense.

“Yeah,” I said.  “See, we all have things that make us different.”  I smiled down at Chloe, who grinned back at me.  The four of us stood there for another minute, feeling a little awkward, but not quite ready to go our separate ways.  Finally, I put my hands on Chloe’s wheelchair handles.

“Well, it was nice talking to you,” I said, as I turned her toward the milk aisle.

“Yeah,” said the short kid.  His friend smiled and waved. As Chloe and I walked through the store, finishing our shopping, I felt a little giddy.  Maybe that kid’s question was rude.  Maybe someone should have taught him not to go up to strangers and ask “What’s wrong with you?”

But I was happy that no one had, because thanks to that kid and his rude question, Chloe and I had just had one of the best conversations of our lives.


10 Responses to “What’s wrong with you? (The best conversation of our lives)”

  1. This one sent tingles through my body — what a teacher Chloe is!

  2. Lesley Says:

    This was really nice to read. When I address the “what’s wrong” question, I feel the need to say “nothing is -wrong-” so that the child I’m with in the wheelchair won’t feel as if I’m agreeing that something is “wrong.”

    But I usually say something that really doesn’t impress kids, like “Nothing is -wrong- with X. It’s just his brain has trouble telling his arms and legs to work.” But I don’t feel satisfied with that answer and neither do the kids asking. Of course, I’m not the parent, so I don’t know how much to say.

    • camillajoy Says:

      Yeah, the whole brain/muscle explanation always kind of sounds weird and tedious. The great thing about this kid was that he immediately related it to something he understood, and then we could have a conversation. The important thing, I think, is to make kids feel comfortable asking questions–there was a section about that in the original essay, maybe I’ll post that part next week. Of course, when you’re not the parent, there is the question of how to answer. I always tell Chloe’s teachers that they are free to answer any questions the kids have about her disability, to the best of their ability. And if they don’t know what to say, they can just ask us.

  3. jesse anderson Says:

    Great Story camilla. i hope too see you and the fam very soon xoxo

  4. Marieke Says:

    Beautifully written.

  5. nadbugs Says:

    Love this, C&C. So very touching. And I agree with Marieke: You have a real gift for reaching out with the words! –Anita (“Nadbugs”)

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  7. […] not saying I’m a better storyteller, and I’m not saying our lives are one meaningful experience after another, though there are plenty of those. I mean crazier, more dramatic, more terrifying […]

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