Cerebral Palsy: A Wheelchair in School

school with cerebral palsy
What is it about school that makes you want to fit in?
1 Comments / 0 Shares


It was a good thing we were talking on the phone so she couldn’t see my expression. My cousin repeated, “Umm, Helloooo?… Did you hear me? Can you do me a favor tomorrow?”   

What I said was, “Ummmmmmmm…” but what I thought was, Damn it! I had already mentioned that my schedule was open…  she had trapped me. I scratched my chin stubble and said, “Yes, I’m free.”

“Well… Do you think you could take Stephen to school tomorrow? It’s his first day, and I have a job interview at Dr. Coss’ office.”

It was the question I had been dreading. I winced, but tried to sound upbeat. “Well, sure I’ll do it, of course I will. Of course. No problem. Anytime. Be glad to. Just say when—” I pursed my lips to stop babbling.

“Calm down. It’ll be OK,” she said.

“Absolutely. Of course. Things will be OK.”

“You need to get to my house early so I can show you the van, and the chair lift, and emergency equipment, and the— “ she talked on, but my mind wandered. My pits began sweating. I imagined all the eyes, all the whispers. I felt silly for being anxious, after all, I was a full-grown man who’d done four years in the navy as a medic.  I’d be helping a single mother, a family member. Stephen was starting 6th grade in a new school and I needed to stay with him and push him from class to class. Administration would not allow him to attend without an escort because of his cerebral palsy.

My pulse quickened as I imagined all the eyes peering. I thought, what is it about school that makes you want to fit in?  I knew that if she had asked to carry him to physical therapy, or to the doctor’s office, it would not have affected me at all. But school…school was different.

I kept telling myself that things would be OK.

The next morning, a hot flash swept up my face as I got my nephew out of the special van and wheeled him, semi-reclined, toward the door. Kids were staring. Stephen nervously played with the air tube connected to his throat. It set off a beep—beep—beep. “Is my hair OK?” he croaked as kids stared at the beeping, blinking medical paraphernalia.

All went well. The kids in the small town were polite and some said hello, but nothing else. But then after lunch, in history class, a plump black girl in a pink dress came up and asked him, “What’s wrong with you?” as if his condition were no big deal. Before he could answer, she continued, “My brother got shot and had to wear a tube like that for a year. I helped take care of him.”  

“Umm... what’s your name?” asked Stephen.

“Monique.” She plowed on with her story, saying, “At first he couldn’t get out of bed and had to wear those Depends things… I didn’t help with that.” She wrinkled her nose as if she smelled a dirty diaper. An awkward silence followed as she waited for a reaction. She looked Stephen up and down; I felt she was about to ask him if he wore a diaper.

Luckily, a tall pretty girl in pigtails came over and introduced herself as Ellie. “It’s short for Elaine,” she said. Monique lumbered off to the teacher’s desk, but I was thankful for her—she seemed to have broken the ice. Other kids moseyed toward us for a closer look.

Stephen croaked, “Hi, Ellie. My n-n-name is S-S-Stephen.”

As they talked, Stephen started breathing harder and wheezing through his tube, so going with the flow, he did his famous Darth Vader impersonation… “Luke,(wheeze) I am your father.” He nailed it in my opinion, but from her puzzled look, I don’t think Ellie knew who Darth Vader was, but being friendly, she laughed and touched his shoulder. Instantly the pulse monitor flashed and chimed a beep—beep—beep. I flailed at buttons. Stephen sighed as he gave me instructions on how to re-set the machine. He turned to the class, who all stared at him. He rolled his eyes and shook his head in a comical manner, then jerked his thumb toward me, indicating that I was about useless.  The kids laughed.

The teacher called for the class to start. “See you soon,” said Ellie and she went to her seat. Stephen turned to me, beaming. I did a quick mime of reeling in a fish and whispered, “You have her hooked.”

“How’s my hair?” he asked. I gave him a ‘thumbs up’.  We both relaxed. I let out a breath; I felt like an adult again. Maybe things were going to be OK.

The history teacher began with the civil war. After a few minutes of his droning, a story my grandpa had told me about great- great uncle Festus came to mind.

The students looked bored; some slumped, some doodled, one yawned. I bent and whispered to Stephen, “Remember the story of Great Uncle Festus who fought in the Civil War?” He nodded, but his eyes bugged out when I raised my hand and whispered, “I think the kids would like to hear that interesting story.” 

Stephen hissed, “Don’t you dare!” He looked at my upraised hand then at the teacher, then at Ellie. She was twirling her finger around in her pigtail.

“It’ll be OK.”  

Stephen didn’t go for it. He leaned toward me, causing a machine to beep and a light to flash. His twisting caused a spare air tank to clang to the floor, getting everyone’s attention. Stephen’s eyes half begged and half threatened as he whispered/growled, “DON’T. EMBARRASS. ME.”

The teacher turned and called on me, and I regaled everyone with the family story. Using a bit of melodramatic acting and family showmanship, I showed how two stale biscuits and a woman’s bra actually saved Uncle Festus’ life. The story was fairly tame, (but borderline risqué for sixth graders) and so, needless to say, they loved it.

Afterward, students stood around asking us questions. Stephen hit his stride. He kept everyone laughing until the teacher called the class to order and sent his new friends back to their seats. Oozing with the swagger of a Hollywood fighter pilot, Stephen leaned over and pushed imaginary sunglasses up the bridge of his nose. He whispered to me, “Hey kid…You’re not half bad as my wing- man…Whatcha  doin’ tomorrow?”  He took an imaginary toothpick from his lips. (Being confined to the wheelchair, Stephen had become a movie buff, and I knew he was thinking of the 80’s classic ‘Top Gun’, one of his favorite flicks.)

“I’ll have your back, Maverick,” I said in my gravel-iest voice. We gave each other a look and a nod, like veteran pilots about to go into battle. After a while, the bell rang. Class dismissed and Ellie walked toward us. Stephen looked at me, as if unsure. I said, “Let’s do this!”

He looked me dead in the eyes, nodded, and  then his eyes lit up. “Yes… Let’s DO this.” He held up his tiny knuckles and we did the world’s coolest, manliest fist bump.

Yep, things were going to be OK.


P.S. This happened years ago. Stephen finished high school but died at age 20. 

Comment on this story using Facebook.