There's really nothing like having thought you'd already done all the complex and horrible work of advocating for yourself and your health needs and then having people just straight up forget or fail to document it and having to do it all over again.
-
There's really nothing like having thought you'd already done all the complex and horrible work of advocating for yourself and your health needs and then having people just straight up forget or fail to document it and having to do it all over again.
Feels like being put on trial about some of the worst experiences you've ever had to go through.
-
Sociology and psychology of discrimination talks about the "dual consciousness" and other bifurcations that happen because of how we treat others. Being successful, kick-ass, and having more impact with my research than I ever imagined does not fix the experience of disability in any way. I had my research findings go in front of boards and to wide public audiences the *exact same day* I'm called in to justify my need to breathe.
-
This is not to say I don't see how much I have. So much to fight with. Every day I think about my people, I almost consider us family even in the same way I consider queer people family, all those with long covid who don't have the tools and the scientific expertise and the support and the language that I have. So you pick it back up and go back to fight for more, over and above how much you would do it just for yourself.
-
Just because the world wants what you can do, doesn't mean it always wants who you are; I see a large theme across all the research I ever do that speaks to this argument. If you want what we can do you better get out of the way of who we are.
