Our allies at Human Restoration Project shared the efforts of their friends at Cortico on “human listening” and “community listening”.

I’m here for human listening and community listening and participatory research. As I dive back into the medical model for another round of treatment, I again profoundly feel the lack of listening and the weight of invalidation and epistemic injustice as I attempt to advocate for myself.

epistemic injustice = harms that relate specifically to our status as epistemic agents, whereby our status as knowers, interpreters, and providers of information, is unduly diminished or stifled in a way that undermines the agent’s agency and dignity. Our testimony is unduly dismissed because of prejudiced beliefs regarding minority groups.

Being a patient (and likewise a student) is one of the most disempowering things you can be. I’ve been treated like a child. I’ve been treated like an invalid. I’ve been treated like a bad dog. I’ve had doctors talk to my partner about me as if I wasn’t right there in front of them. We’re discarded as experts on ourselves. Doctors tell us not to conflate our research with their medical degrees, yet conflate their one hour lecture on our conditions with our lifetime of living it.

It’s hard.

I am nearing the point where I’d rather resign myself to a contorted and agonizing death from my neuromuscular disease than further submit myself to a structurally ableist and broken healthcare system that brutally and relentlessly grinds chronically ill people down body, mind, and soul.

Further reading: Healthcare Access: They don’t take Disability Studies classes. They don’t socialize with us. They don’t listen to us. – Stimpunks Foundation