I want to talk about staring. For just a minute.
Cameron gets stared at a lot, ever since his initial diagnosis five years ago, when we brought him home from the hospital with a ragged scar across his scalp, a droop in his face and a vacant look in his eyes. During the pandemic, when we weren’t really taking him out anywhere, I think I forgot about the staring. Now that we’re starting to venture out again, I’m reminded that this kid we adore doesn’t really look like everyone else.
I don’t think people stare because they suck. Actually, I think most of them have good intentions. They do it out of curiosity. Concern. Pity. I try to smile and not let it hurt my feelings. Or Cam’s.
And little kids always, always get a pass. They stare at everybody. Plus, most of the time, they just want to know if Cam can play. And that’s awesome.
But sometimes the staring gets weird.
Yesterday we popped in to King Soopers for a few minutes to get Cam out of the heat. I was carrying a bag of pretzels and a couple sports drinks, dropping them all over the place because I didn’t think to grab a basket, pushing Cam’s wheelchair with one hand. Brady was with us, her arms also full of things we didn’t need, looking for the baby section because we ran out of wipes. We came around the corner, I looked up and there was a girl, about twelve years old. She was staring at Cam, the saddest expression on her face. I stopped and smiled at her and she said, “I love special needs.”
For one idiotic second, I didn’t know what she was talking about. How did she know Cam was special needs? (Ignore the term itself for now, that’s a discussion for another day). Then I looked at Cam as she must see him. Flushed pink cheeks, eyes that don’t quite sync, one arm trying to grab shampoo bottles off the shelf while the other lay in his lap. And of course, the wheelchair.
With an awkward nod, I told her, “Um…thank you?” I mean, what do you say to that? (Of course, an hour later I came up with a great comeback. Ready? I should have said, “You should get one!” Ha! Well, I thought it was hilarious. Later. When I thought of it. My philosophy is any time things feel awkward, make a joke. So, I’m awkwardly joking a lot. Anyway, back to the story).
She was a kid, and I know what she meant by the comment, but it was offensive. Almost. I mean, kinda. Because what she meant was (I think), I support you and your cute kid who has challenges, but what she said felt more like what you’d say if someone had a cute dog. Like, I love poodles.
The more time goes by, the more I’m really learning what it means for my son to be part of a population that is difficult for people to relate to. I have a friend whose daughter has severe medical complications say the other day that some people feel more comfortable saying “Hi” to her dog than to her daughter.
I wanted to argue with her. But you guys, she’s right. It’s a big, socially awkward mess. Sometimes I can see the instant it registers in a stranger’s mind that Cam isn’t in a wheelchair because he’s lazy. The momentary panic as they decide what to say or do next. Most of them decide to smile and move on (a perfectly wonderful response, by the way), and some of them realize they are staring. And their eyes lift. To my smiling face. Staring right back.
AWKWARD.
At the same time, I get it. I mean, almost everybody’s got a doggy they love. Almost no one has a Cam.
So what’s a friendly typical person to do? It’s a complicated question with no perfect magical answer. I’m just one momma, with one challenged kiddo, but I can tell you what I think.
1) Just smile and say “Hi”, maybe a little wave. Or just smile and say nothing, which might actually be possible as the masks start to go away (However, if you are wearing a mask, thank you for helping protect my kid!).
2) Read the room. I’m just fine with explaining what’s happening with Cam, if I have time. I actually like educating people, especially children, but not when we’re in a hurry or in the middle of something. And it’s wonderful to come across people in similar situations, whom we would never know if no one spoke up. Still other people I know hate explaining their loved-one’s (or their own) disabilities. So, if your curiosity and concern are real, and the individual/mother/father/caregiver seems open to it, go ahead and ask. Otherwise, clam it up. You’ll survive.
3) Think about how and what you’re saying. If you just really, really want to acknowledge the struggle, offer support and solidarity, remember you’re talking to a person. About a person. What would you say to someone who had a beautiful typical baby? Just give a compliment. Something real. And not about the disability. Something like “He’s adorable”. Yeah, try that one next time.
4) Please try not to stare at my son. If you do, and I catch you, I’m gonna make a bad joke and then we’ll all be sorry.
Okay, look. My son, Cameron, is abso-freaking-lutely adorable, and I can see why people gotta stare. And I know the wide-eyes, the inappropriate comments, the awkwardness, is human nature. But let’s just drag the awkward out into the open, point and laugh at it, so that in time, things will change.
Cam isn’t staying home, folks, so next time you see him out rolling around, how about a high five?
Decades ago, I shattered my ankle. Boot, wheelchair and walker. I noticed how people looked at me differently– even people who had known me for years. They saw the wheelchair but not me. Of course, I was an adult — not a mom with a kid just trying to get through a hectic day– but I would have given anything for someone to stop and actually see and talk to me. Or to ask what happened or what I needed. Once I moved away from wheelchair, I quickly discovered that some people thought handicapped meant wheelchair. But for me, a wheelchair ramp was NOT what I needed then even though I was told to just use the ramp. I wish someone had stopped to ask me hat I Needed. They did not. We have a special needs dog who wears 2 braces on her hind legs and who has mental special needs. When she first got her braces, no one looked at us or spoke to us. It was soooo weird. Back then it was fairly new technology. Granted when we are out with her we have more time than a mother with a child might have, but before the pandemic, I was a lot more comfortable when people asked about her than pretending we did not exist. Caveat– that they do not approach her fast– she is scared of people. Anyhow, after my ankle, I made a promise to myself never to treat people the way I was treated but your blog is a reminder htat what is good for me might not be good for someone else.
Hi Merri,
I’m sorry strangers made you feel insignificant. I think that’s the point: people who are disabled are PEOPLE, whether they have a chair, a boot, a lazy eye or whatever. Ignoring, staring, talking ABOUT them instead of TO them is just a weird manifestation of human nature and I hope the more we talk about it, the better it will get!
Love this post!
Thanks for reading!