Grappling with opposing ideas in the disability community

I recently read a column by my colleague Ben Hofmeister for Multiple Sclerosis News Today. He wrote that, for him, disability pride is about celebrating the advocates who came before us and who made the Americans with Disabilities Act possible. He also made the point that people can have opposing ideas. For example, he’s unashamed of his disability but simultaneously wishes he weren’t disabled.

My column for Disability Pride Month was quite different, as I extolled the pride I feel in belonging to the disability community. I also shared how my disease, Friedreich’s ataxia (FA), has led to disability, but has also helped shape me — and many other patients — in ways that I love.

I don’t disagree with Ben at all. We may have different perspectives, but both are true and valid.

Our opposing ideas remind me of an argument I often have in my head. In it, I understand that the disability rights movement asserts that people with disabilities don’t need to be “fixed.” I believe this. At the same time, I want a cure for FA.

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How can both be true?

Because disease and disability are normal diversities among human beings, I see myself as normal, but not typical. I don’t need to be fixed to be a happy, contributing member of society.

For that reason, I invest my time and energy in the notion that I don’t need fixing; rather, my environment, which primarily accommodates abled bodies, does.

Tenets of the disability rights movement include improving accessibility and inclusivity in physical and social environments. As a member of my city’s commission on disability issues, I work to support this goal by helping to make our city more accessible and valuing of people with disabilities.

However, I also work to support a cure for my disease. FA symptoms are rough, and I’d love to not have to deal with them. More importantly, if I never again hear of someone dying from FA, it wouldn’t be soon enough. I want all of us with FA to be fixed!

My life would be much easier without this disease. If I had a condition that wasn’t degenerative, and therefore constantly diminishing my abilities, I don’t think I’d feel the same desire to be cured. For me, being disabled and having to use a wheelchair aren’t the worst parts of FA.

Importantly, though, I’m not saying that someone with a nondegenerative condition is wrong to want a cure. I’m just saying that I can imagine (but haven’t experienced) some situations in which I might not want to be cured.

There is a lot of diversity within the disability community. Some of us want cures, some don’t. A blog post on the Disability Wisdom Consulting website highlights this.

I attend, participate in, and help plan as many Friedreich’s Ataxia Research Alliance fundraisers as possible to help find a cure for FA. At the same time, I love myself as I am, FA or no FA. It’s confusing, though. Am I betraying disability rights by pursuing a cure for my disease?

My feelings might seem dichotomous, but ultimately, I believe it’s just for me to want both a better world for people with disabilities and a cure for my disabling disease. I feel good about working toward both.

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.