3/5/25 - Long COVID, joyful advocacy, and Montreal accessibility
I was sick yesterday, but feeling better today. It's taken me an awfully long time to figure out that a good winter for me is one where I have a few random, isolated sick days, while managing to escape a more serious two or three-week illness. Knock on wood, it looks like I'm within sight of making it through another winter without major down time.
Here are the three links I had lined up to share yesterday. Doesn't it seem like it's harder than ever to feel like we're keeping up with important disability news lately? Even doing this (mostly) every weekday I constantly feel behind.
Trump commands HHS to terminate advisory committee on Long COVID
Miles W. Griffis, The Sick Times - February 21, 2025
"The Secretary’s Advisory Committee on Long COVID includes 14 members, composed of patient advocates, physicians, researchers, and others, some with lived experience of the disease. Despite being classified as special government employees, the committee members are unpaid volunteers ... 'This advisory committee had the chance to meaningfully shape what policy would look like as we drive towards approved tests and treatments for Long COVID,' said Todd Davenport, a professor of physical therapy at University of the Pacific and chair of Long COVID Physio ... 'With one presidential order,' he said, '[Trump] flushed that.'"
There's a somewhat quiet divide among disability communities over how much of a continuing danger COVID is, especially to disabled and chronically ill people. Some still operate on the assumption that COVID is still a significant danger, while others treat it as mostly past tense. But it seems like everyone in the disability and chronic illness communities agree that Long COVID is still really bad, and something we need to learn more about – not intentionally ignore. I have two other questions. 1. Was this committee targeted because it's about Long COVID, something the Trump administration may think is a bogus issue anyway? and 2. If they want more efficiency in government, shouldn't they want to do more things with committees of unpaid volunteers?
Why should advocacy be joyful?
Sam Crane, Joyful Advocacy - February 28, 2025
"Advocacy requires working collaboratively with others. If you’re constantly angry, it’s genuinely hard to show the qualities that make you a good collaborator: patience, empathy, collegiality, and ability to see the best in people. Especially when the people you’re trying to work with don’t do what you want them to do, or don’t agree with you on important policy issues, or just get on your nerves."
My goodness this is a helpful essay on advocacy! Maybe it helps me partly because Sam Crane seems to have views on advocacy that are similar to mine. I'm an "incrementalist," I like advocacy goals to be as specific as possible, and I struggle with how to process anger in advocacy – others' anger and my own. This would be good reading for longtime disability activists, but even more so for people just getting involved for the first time.
An Accessible 48 Hours in Montreal
Sylvia Longmire, New Mobility - February 27, 2025
"I hadn’t visited Montreal since I was a teenager, long before I used a wheelchair. So when I had the opportunity to explore the city’s accessibility as a panel judge for the Good Housekeeping Family Travel Awards, I jumped at the chance. However, I was a bit anxious about the trip, as I remember plenty of cobblestones in the city’s Old Montreal area. Canada also doesn’t have a federal accessibility law like we do here in the U.S., so I was curious about how much I would be able to see and experience as a wheelchair user. Fortunately, it was quite a bit."
Montreal is my favorite big city. That's at least partly because it's only an hour's drive north of where I live. But it's a genuine bonus that Montreal is a beautiful, vibrant, interesting city as well as being close by. I have less insight than one might expect into its accessibility though – mainly because I have never tried to get around Montreal in any kind of wheelchair or mobility scooter. So it was fun to read a wheelchair-user's tour of a few Montreal experiences.
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