Getting diagnosed with FA made me afraid of wheelchair users

When I was diagnosed with Friedreich’s ataxia (FA) in 1981, I was a sophomore in college. I lived in a newly renovated dorm that was wheelchair accessible, and, naturally, a woman who used a wheelchair lived with us. I did everything I could to avoid her. I remember heading for the side door when I saw her heading for the front door so I could escape crossing paths with her. While recalling that makes me cringe, I know I was never mean.

Learning of my FA shattered my young life; it filled my world with uncertainty, fear, and loneliness. Among the myriad emotions that overwhelmed me was a fear of people in wheelchairs.

Back then, wheelchairs symbolized a loss of independence to me and served as a stark reminder of the degenerative nature of FA. The doctor who diagnosed me stated that I’d likely start using one by the time I was 25. I was 19. I recoiled at the thought. My mind conjured images of a future confined and dependent — a future I desperately wanted to escape. Little did I know that people in wheelchairs are as likely as anyone else to lead independent, full, and happy lives.

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It didn’t help my fear that many myths and ableist beliefs were abundant in society, then and now. One I heard and hear all the time is, “He/she/they are confined to a wheelchair.” No wonder I thought you couldn’t be independent if you used a wheelchair. Yes, wheelchair users can’t walk for many reasons. For people who need them, however, wheelchairs are liberating, not confining.

While understandable, given my circumstances, this fear wasn’t OK. It reflected my insecurities and misconceptions, a defense mechanism against confronting my reality.

My fellow dorm resident would often ride in her wheelchair on the road in snowy Amherst, Massachusetts, during the winter. I’d think she was on a suicide mission. I didn’t understand that snow-covered or poorly cleared sidewalks were impassable by wheelchair. She could’ve educated me. I missed out.

I use a wheelchair now, and it’s not scary

Years have passed, and while my mobility hasn’t declined as quickly as predicted, it has declined. However, the day I started using a wheelchair — at 44, not 25 — was one of celebration and grief because I could do more independently though I’d lost the ability to walk.

My wheelchair has become an essential tool that provides the independence I once thought it would strip away. It’s allowed me to navigate the world with a new perspective, one that’s no longer clouded by fear but enlightened by experience. I’ve come to realize that the people I once avoided are like me — resilient, capable, and deserving of respect.

My cringeworthy dread of people in wheelchairs was an understandable but misguided reaction to my diagnosis. I must grant myself grace for avoiding my fellow dorm resident in a wheelchair. I realize she probably had a lot she could’ve taught my 44-year-old self about the ins and outs of being a wheelchair user.

Whether or not the doctor has told you that a wheelchair might be in your future, don’t avoid people in wheelchairs. We might be your next great friend. When I sense that people are afraid of me, I try to remember that scared 19-year-old I once was. A little empathy extended to someone who’s fearful can go a long way. You never know where the fear is coming from.

If you’re reading this column and used a wheelchair at the University of Massachusetts Amherst and lived in Brooks Hall in the 1980s, my sincere apologies for not looking you in the eye and saying “Hi.”

Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.