How my wheelchair and its swag have helped me tell my story
It doesn't define me, but it does show where I’ve come from and where I am going
Written by |
Because I live with spinal muscular atrophy (SMA), I have used a power wheelchair for most of my life. As far as I can recall, I have had seven different chairs, each one unique in its level of comfort, durability, and advanced functions.
I’ve always had a complicated relationship with my wheelchairs, experiencing strong emotions toward them from embarrassment to pride to frustration to delight. I’ve flip-flopped between loving the independence a chair gives me and hating the obstacles and assumptions it presents. It’s more than a chair or a piece of equipment; it’s somehow linked to my image — how I see myself, and how I am seen by the world. And so, it became a canvas, a billboard for me to express myself.
It started when I was about 6, and stickers were the name of the game. Whether I performed a piano piece perfectly, was cavity-free at the dentist, or completed my homework assignments, the rewards were stickers. And how is a good girl supposed to make all those stickers last forever? Why, she sticks them to her wheelchair, of course! Glitter, holographic, scratch-and-sniff, smiley faces, Garfield the cat, Care Bears, and inspirational quotes like “Awesome!” were plastered on every inch of available space around my joystick control, side panels, and battery cover. It was the mobile scrapbook of my elementary school years.
Telling my story
As I got older and outgrew the cheap and easy reinforcement system, I started adding bumper stickers and designing and printing signs to put on the back of my wheelchair. They were mostly Bible verses, song lyrics, or favorite movie quotes, and I changed them out every few weeks. I thought I was very cool and clever. I even had an obnoxious plastic bike horn for a little while.
When I got to college and discovered I wasn’t as cool as I thought, I mellowed my wheelchair decor to purses and wristbands. Even now, I am proud of my cute and classy pocketbook and handmade tote bag (with swag buttons), and the little-kid friends in my life make me bracelets that fit perfectly around the base of my joystick. Recently, some of my wheelchair friends were discussing bedazzled joystick toppers as the latest fashion trend, so I may have to explore that possibility, too.
My wheelchair is part of how I move through and access the world. It’s one of the ways new people encounter me and friends get to know me, so it should reflect things about me like my sense of humor, my passions, my interests, and my joy. It does not define me or determine my identity, but it helps me tell the story of who I am, where I’ve come from, and where I am going.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
Leave a comment
Fill in the required fields to post. Your email address will not be published.