Disabled Folks Aren’t Always Looking for a Cure and You Should be OK with That

I’m actually pretty ok most of the time with my impaired vision. I gave up driving in 2019. I read with my eyes a lot less than I used to. I write with my eyes a bit less than I used to. I’ve been not driving for long enough that it feels completely normal to me to rely on public transportation and rideshares. Not being able to make sustained eye contact with people in conversation is trickier, and while adapting to reading and writing less with my eyes has been challenging, I am getting better, which makes me think it will eventually feel comfortable to me.

My impaired vision seems to matter much more to other people than to me. Many people ask about my vision when they greet me, which I take as a way to acknowledge that they remember I have impaired vision and they hope it isn’t negatively impacting me. These inquiries don’t bother me at all. I am also not bothered at all when people don’t ask about my vision, which to me acknowledges that impaired vision is part of who I am, the same way being short or having big hair is part of who I am and doesn’t need to be commented on.

What does bother me:

  1. When that inquiry turns into a grilling about what I’ve tried or researched to “fix” my vision, or someone aggressively suggesting I contact the doctor they know. I spent years getting my diagnosis and I spend a lot more time than the average person with vision specialists just to maintain the vision I do have. I don’t want to put more time and energy into it. I have made a deliberate choice about how much time and energy to put into my vision issues and I don’t appreciate having that choice challenged by someone who has not experienced disability—and it seems to always be able-bodied folks who do the grilling.

Establishing boundaries around the time and energy I put into this is not “giving up.” It’s not weakness. It’s not laziness. It’s a deliberate choice I’ve made that takes strength to defend on a regular basis. The vast majority of the time, my vision issues don’t keep me from doing what I want to do. For example, in early June, I traveled by myself to a country I had never been to before that is not very accommodating to folks with disabilities. My vision issues made the trip a bit more complicated than it might have been for someone with “normal vision,” but it was absolutely doable for me. I am very happy with my life and don’t feel like my vision impairment makes my life worse.

What does make my life worse is being judged by others for not “doing everything possible” to fix my vision. When I tell someone who is grilling me to back off, they often respond with, “Well, I just thought you’d want to do everything possible.” Everything possible seems to be a euphemism for making my vision impairment the sole focus of my life. No, I would like to spend my limited time on earth doing much more interesting and satisfying things.

  • When the news that my vision has not improved at all is received ruefully. I’ve seen people be visibly deflated when they hear my vision hasn’t improved. Because I’ve stopped hoping for improvement, the lack of improvement doesn’t bother me, and it seems to me, that if it doesn’t bother me, it shouldn’t significantly bother someone else. But neoliberal culture values constant improvement, which means a lack of improvement must be cause for disappointment.

These two types of responses put the focus on fixing a problem and render invisible the work that matters to me: my adapting to my impaired vision, learning to work through and around the barriers in the world, and living the best life I can with the vision I have.

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