just reminded by another convo going on that maybe one reason people w EDS might be Reacting Strongly to patterns of [advocates with institutional power blocking indiscriminately over clarifying questions] is because we have seen how this played out with L*ra Bl*om.
(other convo)
https://twitter.com/emily_rj/status/1487897356918001671
like if you don’t want people to be mad at you for excluding them from your advocacy work after you’ve intentionally built a professional brand around representing those people, consider not self-identifying as a representative to begin with?
(yes I’m def being flippant because I recognize this is not an isolated two-person conundrum.)
(and also in my first tweet I don’t mean to suggest that only ppl w EDS are having this conversation rn. just that some of us in the conversation may also remember these other conversations.)
in 2019 when people were talking about this a lot more I didn’t really know enough about EDS to parse all the criticism, and now in 2022 my biggest TEDS criticism is that they have done fuck all to support people with EDS (and HSD!!) through the pandemic. and like, grossly.
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