My wheelchair is not a hindrance, but a gateway to the world
Whenever I think about how I started driving my wheelchair at 3 years old, I always wonder, “Whose great idea was that?” I accidentally crashed into furniture. I made plenty of dents in the walls learning how to navigate my new set of wheels. I even accidentally knocked down the Christmas tree one year and thought I ruined Christmas.
But the reason for all these mishaps was that I finally felt free. I could run around with the little kids outside. I could roam around my home without waiting for someone to carry me. I could finally gain my own sense of independence.
All my life, my wheelchair has been my source of freedom. It’s always been more than just another piece of medical equipment in my SMA survival kit — and it’s likely the most expensive piece of equipment I own. Due to my limited mobility, I need a customized wheelchair that fits my specific needs. It takes a lot of meticulous planning and testing, and often a hefty bill, to accommodate my needs. (My most recent wheelchair cost almost $50,000.) But the time and money that go into my chair grant me access to the world. And that is priceless.
Misconceptions about wheelchair users
Despite the goodness that comes from having a mobility device, I’ve often encountered strangers who pity me or pass judgment because I’m in a wheelchair. I’ve learned that society has constructed a certain narrative around being in a wheelchair — one that suggests it’s limiting or unfortunate. They use terms like “wheelchair-bound” or “confined to a wheelchair” or express their sympathies, insinuating that using a wheelchair is pitiful.
And they fail to recognize the implications of their actions and how they couldn’t be further from the truth.
I’ve been on the receiving end of comments like these for most of my life. Usually, they’re said by a stranger in passing when I’m simply out in public trying to run errands or enjoy time with friends. I don’t entertain those comments too much. I typically flash a curt smile and briefly express how I’m happy and thankful for my wheelchair. I may not know how they process those words, but my hope is that it prompts them to reconsider their beliefs.
The reality is that my wheelchair has opened the door to more opportunities than I’d have without it. It’s helped me travel to different states and countries, allowing me to discover the beauty that exists in this world. It’s taken me across the stage at college graduation and down hospital halls to lifesaving procedures. It’s provided me with the ability to go out with friends and be social out in public. It’s been my gateway to the world.
As someone who depends on others for all my caregiving needs, the independence my wheelchair gives me is something I’ll never take for granted. So the next time you see me out and about, know my wheelchair is not a hindrance or a burden. It’s a blessing.
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.
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