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C—'s avatar

The community has evolved dramatically over time, and not in a direction I like.

I've had what's now called ME/CFS to one degree or another since the mid-nineties, which makes me a classic spoonie, a label I liked briefly twenty years ago when it meant something a bit different than it does now. A year or so into the experience, I fell into an online disability circle when I met a bunch of folks at an old-fashioned general-purpose BBS (anachronistic even then!) that happened to include a lot of tough-minded people with physical disabilities. It was a lucky break for me. These people recognized me as having a classic, normal set of feelings and priorities for someone relatively new to disability, and I got kind of taken under the wing of a couple of them, particularly a woman who was blind from birth and had a degree from Princeton.

They set a good example and had some very good advice, chief among which was: Be damned careful how much you wind up owing to your disability or illness. That's true for everybody, not just people who might get better.

The Gen-X disability culture I came up in was grouchy, not whiny, and it was relentlessly reasonable. The unspoken vibe was that people with physical disabilities deserved to be treated with the respect due to rational, epistemically adequate creatures, and that those of us who are adults are indeed actual adults and deserve to be treated as such.

I wish more people had access to the experience I did, but disability culture, especially online disability culture, has changed a lot since then.

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Josie's avatar

This is also very true of the online autism/ neurodivergent community, this idea that you’re completely powerless to ableism and you can’t take steps to improve your life and form connections with people

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