At the annual conference hosted by the National Ataxia Foundation, there’s a session called Birds of a Feather, where people with a specific type of ataxia get to talk with other people with the same disability and with clinicians about what their lives are actually like. A physical therapist asked our group: “What symptom of Friedreich’s ataxia impacts your life the most?”
The answer was pretty unanimous: urinary urgency.
We all had significant mobility issues, most of us used canes, walkers, or wheelchairs, but the thing impacting our day-to-day lives the most was pee-related.
The external narrative about disability is so different from the reality of it. It’s easy to assess disability through a visual lens without ever asking the person what their life is actually like.
Think about being stuck at a crowded concert for a band you love or on a six-hour flight. Not having access to a usable toilet isn’t just inconvenient, it’s stressful and potentially embarrassing and uncomfortable, particularly to the stranger sitting in the window seat next to you. And it shapes every decision you make. Every drink of coffee, beer, or water gets considered against how easy it’ll be to get to a bathroom when you suddenly need it.
When I taught fifth grade, we covered the five senses: hearing, sight, touch, smell, taste. But I’ve since learned there are many others. One is interoception, the internal sense that tells you when you need to use the toilet. It rarely makes it into the curriculum, and I think part of the reason is that our bladder is invisible. We teach what we can see. Ears are easy to point to, but organs giving you a weird nudge are harder to acknowledge.
Life is about waking up in the morning, not how you wake up. It’s more important to see The Flaming Lips live than whether you see the concert from a wheelchair. There are setups that could have made the bathroom situation less of a problem for me (a catheter with a leg bag, Depends, etc) but in that particular moment, given the realities of the situation, none of those were available.
What I think we need is to look past the narratives we project onto disability and get closer to the truth of the internal experience of disabled people. This conversation doesn’t happen enough, partly because power tends to sit with people who don’t have disabilities, people whose focus is often on finding a cure rather than understanding daily life. It is not necessarily a bad thing: to a hammer everything looks like a nail, and to a patient advocate everything looks like a patient– it is easy to fall into the trap of seeing a disability as a wrong that must be righted. Simplifying effort in this way is a powerful force for research, but life is not a binary.
What we’re trying to do at Day Undefined is put real weight behind lived experience, the nuanced and unglamorous kind, because that’s actually how people’s days get better.
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