Kennedy Can’t Walk

Kennedy has arthrogryposis, a rare condition that constricts her muscles and joints. 

COURTESY OF KENNEDY ROSE AND FAMILY

Kennedy Rose has a rare disease. But the 17-year-old high school senior isn’t about to let that define her or slow her down.

By Kennedy Rose, as told to John DiConsiglio

When people look at me, I want them to see the honor student who takes six AP classes a semester. Or the kid who sits on the student council and is a star on the forensics team. Or even the girly-girl who likes her hair and makeup to be absolutely perfect.

But some people only see the chair—my wheelchair. I’ve been in one since I was 3 years old. And it doesn’t matter if I graduate at the top of my class and go to law school. Heck, I could be a Supreme Court Justice. To some, I’ll always be the girl in the chair, the girl whose wrists bend funny, whose knees are locked. I’ll always be the kid with that weird-sounding disease.

It’s called arthrogryposis. You’ve probably never heard of it. Only 1 or 2 in every 10,000 babies is born with it. It’s a constriction of the muscles and joints. The joints don’t bend like they’re supposed to. I’m pretty much permanently fused in a sitting position. I still have feeling below the waist, but I don’t have motor skills. Walking is impossible right now. Probably ever. My legs don’t do much. They just sit there and look pretty.

I’ve seen doctors since I was 3 days old. As a baby, I had pins inserted in my feet to straighten them out. When I was 2, a surgeon wedged the bones in my knees and my hips. At 6, I had back surgery. At 14, they fused my spine. Overall, I’ve had 12 surgeries from the time I was born to the eighth grade.

No Pity Parties

Here’s the important thing: I don’t think of myself as the kid who can’t walk. And most of my friends don’t even notice the chair anymore. When you live in a small town like Marion, Virginia, and there are only 700 kids in your high school, I’m just the girl they’ve been pals with since preschool.

People expect a girl in a wheelchair to feel sorry for herself. “Oh, poor me! Why did this have to happen to me?” Stuff like that. Or they go out of their way to be extra nice and helpful. Even my best friend, Jordan, was like that. When we first started being friends, she’d try to do everything for me. But it gets a little annoying. Jordan learned pretty quickly. I told her, “Jordan, I will tell you when I need your help.”

I’ve got amazing friends. They’re experts at lifting me in and out of my minivan when we go to the movies. We even took the van to prom—even in our gowns and tuxes. One of the guys helped me out of the van, and all the girls surrounded me to fix my dress.

Carried Around

My school day is a bunch of ups and downs—literally. Upstairs for AP biology, criminal justice, and English. Back downstairs for government and photojournalism. Our school elevator breaks down all the time. It’s a pain, but there’s always someone around to carry me—usually one of the football players. I’m just 4’8” and 75 lbs—so it doesn’t bother them. And it sure doesn’t bother me!

There are a lot of things I can’t do for myself. I can’t lift my arms, so I can’t dress myself or pull a pencil out of the pockets in my chair. I really can’t feed myself. On a computer, I have to use a mouth-stick to peck at the keys. I have an aide in school who helps me carry my books and take notes. And, yeah, if you really want to know, I can’t go to the bathroom by myself either.

The Worst Part

But you know what bothers me the most? I can’t do my own hair and makeup! Also, every now and then I’ll have to set some kids straight. Some junior girls were staring at me in the hall recently. I wheeled right up to them and said, “Hey y’all, you’ve got to cut that out. I’m just like any other kid in this school. Get used to it.”

The truth is my parents raised me to be proud of my disability and maintain my independence. Sure, there are plenty of things I wish I could do differently. I wanted to be a doctor. But that’s not going to work out. So I’ll be a lawyer instead. I wanted to dance ballet, play soccer, be a cheerleader. But my parents taught me that I’m like this for a reason. Everything happens for a reason. I think my reason is to educate people. I’m going to show them that this disease affects my bones—not my brain.

When I was a junior, I was in English class with my friend Erica. I told her about a college in Pennsylvania for people with physical disabilities. I’ve never really met anyone else with a physical disability. I’m the only one like me in my school. “Maybe I should check it out,” I said. Erica looked at me funny and said, “Kennedy, you don’t need to go there. You’re not disabled. You just can’t walk.” That made me so happy, I wanted to cry.

 

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