So 2020-22 has opened a lot of doors for folks in the ME community. Overall, this is great!
AND it's opened the door to charlatans, tokenistic participation, patient-blaming & ableism, cutesy-app designers & folks clueless about chronic complex disease presented as experts. 🧵
AND it's opened the door to charlatans, tokenistic participation, patient-blaming & ableism, cutesy-app designers & folks clueless about chronic complex disease presented as experts. 🧵
People with #LongCOVID who are new to the space may be unaware how hard #pwME have worked to eradicate people of bad faith from our research, clinical, and advocacy spaces. We've developed a reputation for it: #pwME don't take yr sh!t.
We've developed that tough attitude after being exploited. A great deal. And lied about. A great deal. And promised. A great deal. And harmed. A great deal.
We're trying to stand between you and the same.
We're trying to stand between you and the same.
Folks of median ethical sensitivity outside the community frame our responses as the result of trauma (which it is), and use that as reason to dismiss our concerns (which it isn't).
Disabled people DO have trauma.
If you're doing work that further traumatizes us, expect a strong response.
Moreover -- no one's incorrect simply because they're upset. No matter how logically superior their upset makes you feel, it has no bearing on the facts.
If you're doing work that further traumatizes us, expect a strong response.
Moreover -- no one's incorrect simply because they're upset. No matter how logically superior their upset makes you feel, it has no bearing on the facts.
Thanks to all who have replied; I'll probs take a little Twitter break this weekend. Need to reset.
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