6/2/26 - "Invisible" disabilities, and the meaning of "independence"

Good afternoon everyone!

Today's newsletter links are less newsy and more thought-provoking. Scroll down to read on ...

The politics of sitting down

Celestine Fraser, Body Babble - June 1, 2026

"Jo wears their badge attached to their sunflower lanyard, because it 'makes people believe you more'. But they describe the experience as 'very hit-or-miss'."

These accounts of people with non-visible disabilities using an identifying badge on public transport in the UK cover just about all the familiar experiences people with these sorts of disabilities go through everywhere. That includes outright disbelief, ableism, (often mixed with various forms of sexism, racism, and other prejudices), and just plain contempt for the idea of being decently accommodating to anyone with disabilities that don't include a wheelchair or a guide dog. The badge program itself also seems like an example of an idea that should work, that should be a positive step that will make people more aware of people with non-visible disabilities and more willing to help them out. But at the same time, eye rolling and snarky abuse in response to the program seems inevitable. This raises an interesting strategic question in disability activism. How much should we take potential ableist backlash into account in the projects we undertake and policy changes we propose? I ask, "How much?" because I think we would be foolish when designing new disability initiative to act like backlash won't happen. But, we shouldn't be deterred from trying programs like the blue badge just because we are afraid of how others will react. We don't have to give up in advance because ableism still exists. But maybe we can plan our advocacy to steer around it better, or confront it more effectively. This article tackles that question too – with several ideas for improving the blue badge program. It makes me curious about how much disability-informed planning went into the program's design in the first place.

‘But You Don’t Look Sick!’ New Study Reveals Most of Body on Inside

P. Boksan, The Squeaky Wheel - May 25, 2026

"Additionally, MWOOOO compared the participants’ bodies’ outsides to their insides and determined that how their insides functioned did not directly correlate with whether their outsides were found to be attractive to others. The study concluded that a person’s “hotness” is not a reliable indicator of health."

I was going to post this anyway, because it's funny. Then I realized what an appropriate followup it is to the post above.

What "Independence" Actually Means When You Can't Get Out of Bed Alone

Steve Way, Steve Way's Substack - May 26, 2026

"I am extremely independent. I direct my own care, hire my PCAs, and set the schedule. I decide what gets done and how. The help is structured around my life, not the other way around. The fact that I can’t lift my own arm has nothing to do with whether I’m leading my own life. I’m leading it, the arm-lifting is just one task in the much larger job of being me."

This is "basic" independent living in the best, most grounded sense. It's the core idea – the paradigm shift – that first and finally got me to think differently and more positively about my own disabilities. It applies differently and not equally well for everyone. But, it's still a key concept for each of us asserting our personhood and taking some kind of control over our lives. And it's essential for asserting the crucial difference between help that is empowering, and help that is imposed.

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