8/13/25 - A commemorative coin, fighting back in Congress, and thinking about "wellness"

Hello!

How is your week going? Here are your three disability-related links for this Wednesday ...

In Her Own Words: Remembering and Honoring Stacey Park Milbern

Jess Davidson, American Association of People with Disabilities - August 8, 2025

"'A lot of times disability pride gets watered down into this happy-go-lucky accepting who you are/gaining self esteem bit. Though self-acceptance is so important, nondisabled people understanding disability pride in this way disregards the power of disability pride and critiques of ableism. Disability itself redefines normal, redefines what is considered dependence, and if included in social justice analyses, can be extremely useful in understanding how the world works. Living and practicing disability pride is so much bigger than self acceptance.'"

Another pioneer for Disability Justice – in some ways similar to Patty Berne, who was profiled in two links shared in yesterday's newsletter – is being honored today by the unveiling of a U.S. quarter bearing their image. This media project by the American Association of People with Disabilities, marks the occasion with a short biography of Stacey Park Milbern, featuring many quotations from their own writing and speaking. All of them are worth reading. But the quote above is the one that struck me most profoundly. So many of us are advanced in our understanding of disability only compared with a very low standard of ignorance and outright ableism. A lot of us have yet to take the next steps beyond mere positivity. Some days, that includes me. I'm going to try to watch tonight's unveiling event here, and get a Stacey Park Milbern quarter as soon as I can.

Disability Programs In Limbo As Congress Weighs Funding

Michelle Diament, Disability Scoop - August 11, 2025

"'It is an important first step that the Senate appropriations committee rejected the cuts to disability programs proposed by the Trump administration, and it is a testament to the hard work and advocacy of the disability community,' said Alison Barkoff, a health law and policy professor at George Washington University who previously led the Administration for Community Living ... Disability advocates have been pushing back against the cuts for months."

I don't want to overstate the power of disability activism to stop the Trump administrations cuts and policy changes. After all, the "Big Beautiful Bill" passed with devastating Medicaid cuts still quite intact. But some of these comparatively smaller cuts and administrative changes can be fought in Congress, with some degree of success just barely possible even now, despite the administration's intimidation and apparent disregard for Congressional oversight. Letters to our Members of Congress alone won't save us. But it looks like maybe they can still have some positive effect. Apparently, boring, traditional disability policy advocacy isn't quite dead yet. So scroll down to take some action now.

The surprising origins of the “wellness” boom

Jonquilyn Hill, Vox.com - August 12, 2025

"John had a lot of ideas that [suggested] if we weren’t following a trifecta recipe of sleep, eating well, and exercise, and we were doing other things like drinking alcohol or eating meat or sugar, or even if people were overweight — he considered that to be non-virtuous, and essentially really bad behaviors. And he would view it in a very punitive way."

It's a stretch to call this Vox article a disability piece. But understanding the ideological, emotional, and political roots of today's "wellness" culture – and by extension the goals of MAHA and RFK Jr. – is essential I think to understanding why it is both appealing to some disabled people, and terrifying to many others. What's empowering to some can easily become oppressive and judgmental to others. And when a moralistic approach to illness and disability is put into policy, lots of bad things can result for chronically ill and disabled people. Plus, a lot of it bunk of course, which drains most of any possible benefit out of the whole enterprise. Healthy eating, exercise, and self-care are important for everyone. But most disabled people understand that their benefits can be very limited for some people. And equating health and fitness with virtue is particularly bad for people with disabilities that can't be worked or wished away.

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