People with FA don’t need to explain how they spend their time

Sometimes people ask me what I do with myself all day. I know the question is probably meant casually, maybe even kindly, but it lands hard. I’ll feel myself get flustered, the way I often do when a question carries an assumption I cannot quite name in the moment. Before I know it, I’ll be talking about gardening, hobbies, and taking care of my house, as if I have to prove that my days are acceptably full.

For context, I am disabled because I have Friedreich’s ataxia. It is obvious because I use a wheelchair and am extremely poorly coordinated.

Only afterward do I wonder why I answered that way. I have contractual commitments; writing this column is one of them. I also have volunteer responsibilities, including serving as an ambassador for the Friedreich’s Ataxia Research Alliance and participating in advocacy through the Rare Disease Legislative Advocates. My life has structure, obligations, deadlines, and purpose. Yet when I am put on the spot, I often skip over all of that and offer a smaller, more defensive version of myself.

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It’s not just my response; it’s the question itself

The question can feel demeaning, as it suggests that because I do not have a traditional full-time job, my time is open for inspection. It assumes there must be an empty space where employment used to be, and that I should account for it. Most people are not asked to justify the shape of their days or turn their routines into evidence of usefulness. But disabled people are often made to feel that rest, home life, medical care, slowness, or simply living differently must come with an explanation.

I hate that I feel the urge to defend myself. I hate that a part of me wants to yell, “No, I don’t watch TV all day,” as though watching TV, reading, resting, or doing only what my body allows would make me less worthy. It would not. If all I could manage in a day was staying comfortable, caring for myself, or making it from morning to night, I would still deserve respect.

So no, asking a disabled person what they do all day is not harmless small talk. It can feel like a challenge, a quiet accusation that our lives are less productive, less interesting, or less legitimate.

A better question would come from genuine interest rather than suspicion: “What have you been enjoying lately?” “What have you been up to these days?” or “Read anything good lately?” Those questions leave room for a whole person to answer.

The next time I hear that question, and I do not doubt that I will, I hope I can pause before I start explaining myself. I want to remember that my value is not measured by how busy I sound or how easily someone else can understand my days. My life does not need to look conventional to be meaningful. And while I may choose to answer with grace, I am also allowed to protect my dignity with a simple truth: I do not owe anyone an explanation for how I live my day.

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.