I am not ‘wheelchair-bound’ with FA, I am a wheelchair user

I’ve heard the term “wheelchair-bound” in the media a lot lately. I hate those words.

I use a wheelchair because of the symptoms of the disease I have, Friedreich’s ataxia (FA). These symptoms — muscle weakness and neurological problems — mean that at this point in my FA progression, I can’t walk. As a result, I am sensitive to language about any mobility aid.

Every time I hear “wheelchair-bound,” I picture myself chained to my wheelchair, dragging it around like Jacob Marley in “A Christmas Carol.” In my mind’s eye, I can’t do anything independently; I’m just pushed around and cared for all day until someone puts me in bed.

What I picture when I hear or read that term is not my lived experience, however. My life is full of activities I do in my wheelchair — dinner with friends, gardening, going to the gym, making lunch. My wheelchair powers my ability to do these things. You might say I am wheelchair-enabled. However, if you call me a wheelchair user, I am very happy with that.

“Confined to a wheelchair” is similarly inaccurate. I don’t hear this phrase as often. However, it also portrays a wheelchair as limiting rather than as a tool that empowers one’s life.

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I shouldn’t have been scared of a wheelchair

I think we could minimize the fear of wheelchairs for people newly diagnosed with FA if we talk about them as a tool. At 63, I know how powerful this tool is and what it enables.

I often see children zooming around using their mobility aids. This makes me wonder how a wheelchair was described to them or to their parents. Was it described as something that would limit their lives? Maybe it was described as a tool that would let them explore and enjoy their world.

When I was diagnosed in 1981, a wheelchair was described in a way that was scary to me. I don’t remember the exact words, but I do remember being afraid. Using a device to get around seemed unbearable. I had this impression that I would want to hide my disabled body (then described as deformed) in my house while my parents cared for me.

Feeling this way left me anxious, depressed, and scared about my future. Today, I can’t help but think that if a wheelchair had been described as a tool I could use when I could no longer walk, I would have had much less fear and anxiety.

I am not saying that using a mobility aid is easy, even if we talk about it as a tool rather than a prison. There is a lot to grieve about the relentless losses that accompany FA — such as losing the ability to walk — but no one should live in fear of a wheelchair.

We are on the eve of another Winter Paralympics. Watching those amazing athletes using many mobility aids is one way for me to know that society has a far different, more positive understanding of people with disabilities. While 2026 is a big improvement over 1981, cringey words such as “wheelchair-bound” continue to appear in the media, and I wish they would not.

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.