Chasing “Normal”: My Summers at a Camp for Disabled Kids

One of the first things I learned at summer camp was to ignore the dead frogs. New ones appeared every morning, still gooey, and dried up by lunchtime. Their squished remains speckled the paved paths the entire week, like especially large wads of gum.

They’re so little and it’s so dark at night, the older campers said. You won’t even feel them under your tires. Trust us.

I trusted them.

I was seven and I’d never been around so many other people in wheelchairs before. Kids my age barely old enough for long division, kids who’d already sprouted acne and breasts, teens who cussed with the counselors, even some campers in college. They weren’t all in chairs, but they all had Muscular Dystrophy. They were all like me.

They said to ignore the frogs, so I did. And they were right: I really couldn’t feel them dying under my tires.

I went to Camp Walk ‘N’ Roll for twelve years. One week every August, I swam, fished, spun clay in ceramics, tie-dyed shirts in arts and crafts, and dominated the talent show. I ate thin, rubbery burgers drenched in mayonnaise. I slathered on sunscreen to battle the Georgia sun during the day and huddled under piles of blankets in the overly air-conditioned cabins at night. I stayed up way too late playing cards with my cabinmates, all of us giggling about the college guys and firemen who were the boys’ counselors.

Kayla at camp

I did all the things you’d expect at summer camp. That was the goal, after all. The staff wanted us to have a normal camp experience. They wanted us to be able to go back to school in the fall and join in with all the other students, saying “me too!” when they talked about their summer adventures. They wanted to give us exactly what the normal kids got.

They took their mission seriously. There was no camp activity they wouldn’t adapt for us. I rode horses for a few years thanks to that dedication. My counselor would pick me up from my chair and settle me onto the saddle. I couldn’t walk but I could sit upright with the best of them, even on the back of a massive animal. I was good at horseback riding, too; years of driving over uneven surfaces prepared me for the horse’s bouncing rhythm, and I had a light touch with the reins. For about a week after that first time, I wanted to be a jockey when I grew up.

By the time I hit middle school, though, I no longer had the strength to sit that high without any support. I told my counselors I didn’t want to ride that year. They talked me into trying. They said they wouldn’t let anything happen to me and that I’d have so much fun, just like before. I didn’t believe them, but they wanted me to try, so I did.

Two of them put me on the horse’s back and I lost my balance immediately. They called over another counselor to help steady me, then another, and another. By the time six people surrounded me, holding me to the saddle, propping up my back, and handing me the reins, I was crying. I had failed. There was no way that horse could move with six people pressed against it, and there was no way I could hold myself up without them.

Can I please get back in my chair? I asked. Please?

They put me back in my chair. I never rode a horse again.

A few years later, they added archery to the activity list. A row of targets waited for us in the far field where we had our annual water wars. One of the camp staff greeted us with bows and arrows. She had modified ones for those of us who couldn’t hold the arrow to the bowstring. She taught us how to aim and when to release, but I couldn’t draw the string back far enough to let the arrow fly. I managed an inch or two, just enough to propel the arrow to my feet. She told me not to worry. My counselor wrapped her hand around mine and pulled the string for me. I tried aiming our bow, but it was difficult with so many limbs around and so little strength in my arms. We managed. I don’t remember if I ever hit any of the targets, but I technically shot some arrows.

I skipped archery most of the time after that, the same way I skipped horseback riding. When they were on our cabin’s daily schedule, I’d substitute in a couple extra hours of swimming or go hang out in arts and crafts. The staff didn’t love when we did this since they planned for a certain number of people in each session, but enough campers rearranged activities that it usually evened out. And most of the time, our counselors didn’t care. Sometimes they’d say, Come on, it’ll be fun! But if you said no enough times, they’d shrug and follow you wherever you’d rather go.

I understood why everyone wanted so badly for us to participate. Don’t let anything stop you! was their unspoken mantra. On the one hand, it was empowering to know I had the right to demand accommodation. Creative workarounds were expected here; everyone was ready and willing to make changes to let us join in. They designed camp to be a place where we could just be kids.

Of course, we were just kids, whether we were at camp or not, but that’s not what they meant. They wanted us to feel like normal kids, like abled kids.

Wednesday was always VIP Day. Dozens of funders came to spend the day watching us. They wove in and out of all the different sessions, stopping to observe us and comment on what they saw. Sometimes they’d talk to us. 

What’s your name, sweetie? Do you like coloring? Oh, what a pretty dress for such a pretty girl.

There wasn’t room for us to be ourselves, or for us to explore what being disabled meant and how we felt about it. There wasn’t a chance to wonder if we were just as whole as abled kids and our experiences just as valid. We accepted without hesitation that normal was the goal.

Neither the tone nor the content changed as we got older. At seven and at seventeen alike, we were all the same to these oh-so-generous donors. We mocked them mercilessly behind their backs, and sometimes to their faces. It’s not like they were paying any attention to what we were saying. They wanted to take pictures of all the poor disabled kids they sent to camp, pictures for which we dutifully smiled. We loved camp, and if we had to act like baby pandas in a zoo to get their pity money, so be it.

At the time those VIPs felt wholly different from the people running the camp, but I’m not so sure anymore. The former felt bad for us because we were disabled; the latter did everything they could to make us feel abled. It comes down to the same thing, doesn’t it?

I wish my fellow campers and I had taken better advantage of being around each other. I wish we’d reveled in it. Because as much as we loved our counselors (and we did), they couldn’t ever fully understand us. Not like we understood each other.

The counselors couldn’t have told me I wouldn’t feel the frogs squish. They wouldn’t have known the strange mixture of guilt and humor that came with dozens of murdered frogs. They tried. That first year, one of them told me not to feel bad, that it wasn’t my fault. But my peers knew it was my fault — our fault. They knew that while there was no avoiding it, we were still the cause. That counselor tried to shield me from the truth of those corpses; the campers showed me how to look at the tiny smashed bodies and laugh.

Somehow, though, I never felt like I was part of a disabled community at summer camp. Sure, we had moments of solidarity, like on VIP Day. We joked about who could get the hottest guys to carry them out of the pool. We made fun of the way abled people spoke to us. We laughed about our disabilities, but we didn’t ever talk about them.

That was partly because it was a relief that we didn’t have to focus on it there. Out in the world, you have to constantly think about how people are reacting to you, about accessibility, about how very different you are. There’s no forgetting it when little kids, all innocent curiosity, point and ask their parents what’s wrong. There’s definitely no forgetting it when the parents shush them and turn them away quickly, as if shielding their child from even looking at you, as if you’re something that ought to be guarded against. At camp, that pressure fell away and the sameness of everyone was a joy.

But I also think the emphasis placed on having a normal camp experience seeped into us. Maybe we all recognized, without ever needing to voice it, that we were supposed to feel “normal” here. Normal kids weren’t disabled, they didn’t talk about disability, and so we never talked about disability. We never questioned if normal was a good goal. We believed it. We even parroted it back to the VIPs. 

Why do you like camp, sweetie? 

Because I can feel normal here.

In some ways, camp was an exercise in playing pretend. If we rode horses, went swimming, shot some arrows, and never talked about our disabilities beyond the shallowest of layers, then maybe we’d be almost normal, almost abled.

There wasn’t room for us to be ourselves, or for us to explore what being disabled meant and how we felt about it. There wasn’t a chance to wonder if we were just as whole as abled kids and our experiences just as valid. We accepted without hesitation that normal was the goal. We accepted that we could never be normal, that the best we could do was feel normal — with help from the good abled people, of course.

I loved camp, truly. But I can’t help mourning all the missed opportunities. I spent twelve years at camp, twelve years surrounded by people like me. And I wonder, what else could we have shared with each other? What else could we have discovered if we hadn’t been striving for a “normal” we’d never reach? If we had only let ourselves be disabled together?

I didn’t know I needed that.

Community is about accepting each other wholly, as whole people, and that’s what was missing at camp. It never felt like we could embrace our disabilities. We didn’t discuss the joy and pain and fear and hope.

I didn’t recognize the able-normative culture while I was a camper (and I certainly wouldn’t have had the language to name it as such if I did). It wasn’t until later, when I found communities composed of and led by us — ones focused on disability pride, on support and commiseration, on what we need and want — that I realized what could have been.

It was easy to become friends at camp — we had a base of shared circumstance to start us off, after all — but friendship is different than community. Community is about shared experiences (which we had) and the safety to be vulnerable (which we didn’t). It’s about accepting each other wholly, as whole people, and that’s what was missing at camp. It never felt like we could embrace our disabilities.

We didn’t discuss the joy and pain and fear and hope. We didn’t give each other practical advice we could take beyond camp, advice no abled person could ever give us. We didn’t talk about our identities or how disability factored in, if at all. I’m not saying that’s all we should have ever discussed — I’d never trade away the hours we spent shout-singing “Goodbye Earl” or the worried talks about applying for college or the endlessly warm teasing. But why couldn’t we have had it all?

The disabled communities I’m part of now are about creating safe spaces for us to be our whole selves, including our disabilities, not in spite of them. If not for the underlying, unexamined push toward normalcy, that’s what camp could have been.

That first week, they told me to ignore the frogs, and I trusted them. I just wish we’d all trusted ourselves a little bit more.