My Disabled Body: A Pinprick, a Universe

by Leanne Charette

The sharp, icy scent of March stings my nostrils. Heavy snow and ever-present ice makes every step feel treacherous, my feet and cane tips searching for a hold. Above me, the blue sky, so rarely seen during this never-ending season, is dizzying. I feel like a tiny bug looking up at the impossibly high lid to my enclosure. It’ my first time venturing outside in more than two weeks, and I can’ stay long before the vastness overwhelms me, the faint breeze drowned out by the thudding of the pulse in my ears.

As a child, my family was always travelling, determined to push my hot-pink wheelchair down any trail, undeterred by warnings of inaccessibility. In those days, it felt like cerebral palsy didn’t dictate what I could do, where I could go. I spent my summer days bouncing down countless hiking trails across Canada and the U.S., my nights crammed into a tent optimistically designed to fit five people. Our family of four filled it so completely that I’d curl up on my air mattress to keep my older brother’ feet from touching my head. Every day we packed up our campsite and drove further, the endless miles a fever dream ending in spectacular views. Arriving at the Grand Canyon on one such trip, I awoke from a road-trance to find the fever wasn’ a dream. I stood, dizzy and shivering, an ant with canes—the sky far too high, the canyon too deep. Dry desert air, thin in my tiny lungs.

My father scoffed when park rangers told us there was no way to take a wheelchair on our intended hike. He turned my wheelchair backwards and pulled me behind him down the canyon trails, every bump making my teeth rattle. I watched in amazement as a woman in a wheelchair passed us, her skin tanned from adventure, pulled by two harnessed huskies. I promised myself that would be me one day. My rising temperature made the sights bleed into each other, and I don’ remember anything else from that day. That night, my skin erupted in chickenpox.

I learned quickly that while mobility aids and determined helpers made many inaccessible places reachable to me, it didn’t mean my body wouldn’t cry out against the strain of getting to a destination. As I grew older and found my mobility changing, places I used to explore became impossible to revisit. Hazards of winter narrowed my world to the head of a pin. My wheelchair, no longer pink but blue, didn’t wear out its tires on rocky hikes. Instead, it was from endless trips up and down my narrow halls. My pushrims left grey scrapes on the hallway’s paint as I propelled myself one-handed, trying to calm my twin sons, born during a January so snowy I’d nearly forgotten there was a world beyond my front door. The weight of my sons’ heads nestled into the crooks of my arms.

I carved my own canyons now, in doorframes too narrow for my ever-circling orbit between my sons the kitchen, and the toy-littered living room. Notches chiselled into the oven drawer by my wheelchair footplates told of my culinary adventures. Dropped herbs crushed by tires scented the air with flavours from places I’ never visit. A whole world could fit into our living room, my finger tracing the words to Goodnight Moon for the thousandth time as my children, one seated on each of my legs, rushed to turn the pages. They would soothe themselves to sleep by rubbing their fingers across the stretch marks on my stomach—a womb once filled so completely that one son had curled tightly to avoid his brother’ feet. I was a whole universe; my body and heart pushed to new limits I’d been falsely told I’d never access.

My wheelchair is purple now. My spokes are adorned with rainbow decorations placed there by my sons, now twelve. I have smile lines. And the canyons in my doorframes are deeper as I carve space for myself, orbit a world I’ built, no less rich for being small in scope. I still dream of a world where all bodies can move freely without paying a high price. When my body requires the universe to narrow, I reject any notion of tragedy. Small spaces can be glorious. There is that old saying about counting angels on the head of a pin. In my tiny universe, I count at least two dancing.