Explaining a Misunderstanding About People in Wheelchairs

At age 16, I was diagnosed with a genetic, neurological disorder called Friedreich’s Ataxia. I’d been experiencing symptoms since age 11 with no logical explanation up to then. I staggered when I walked, I couldn’t carry a cup of water, and I dropped things a lot, but little did I know that my body cells were struggling to produce the protein called frataxin that stabilizes our balance. Since then, I’ve traveled a rough but ultimately redemptive path from denial (thinking I’d stay at the current state) to anxiety and pain (caused by worsening symptoms) to humility (finally starting to use a walker in public) to contentment (growing accustomed to a starkly visible sign of disability) to happiness (using a lightweight wheelchair that enables more mobile independence than ever).

People often ask, “What happened to your legs?” I sometimes find this awkward when it’s a random cashier or someone else I’ve never met, but I like to think of myself as beyond a level of petty self-pity. Anyways, I’ve developed a layman’s explanation to directly address the (non-hostile) ignorance in assuming that bodily injury equals wheelchair. Here’s my explanation: “I have Friedreich’s Ataxia. Walking requires balance and strength. Paraplegics typically have the balance without the strength–their hand-eye coordination is fine, and they’d be able to walk if their legs weren’t paralyzed. I, on the other hand, have the strength but not the balance. I keep my muscles strong by working out, but I can’t walk across the room without holding on to someone…and I don’t trust myself with sharp objects.”

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FA’ers can participate in fundraisers through rideATAXIA where they ride trikes (able-bodied participants ride bikes).

FA involves more than that–fatigue, heart issues, etc–but whatever, it succinctly clears up a misconception about people in wheelchairs. I think part of the reason people are curious is because I don’t “look” handicapped; my muscles are toned rather than atrophied. Ironically, the progression of my disability has pushed me to care more about my physical body. I guess I treasure every ability I still have, whether it’s driving or taking a shower alone.

When I go with someone to Walmart, they usually ask if I want to use a scooter. I like rolling myself around, so my smart-ass response is usually, “Those are reserved for lazy people!”

4 responses to “Explaining a Misunderstanding About People in Wheelchairs”

  1. […] We lingered outside the restaurant before leaving, still chatting with each other. A man who’d spoken to my grandma in the restaurant even walked outside and gave her some candy. Everyone was in high spirits, though I’d just muttered, “I’m getting tired now” to my boyfriend. Bear in mind that I use a wheeelchair. […]

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  2. I have ataxia too and rude people assumed that because I was in a wheelchair that I’m paralyzed..that hurt

    Liked by 1 person

    1. What kind do you have? 🙂

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  3. […] info on my condition, Friedreich’s Ataxia, in Explaining a Misunderstanding About People in Wheelchairs. I can write future posts about general handicap things, exercising while disabled, the friendship […]

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