Thread by @StarFeuri

Okay so let's talk about this.

First, to protect my job, this didn't happen at Purdue.

Second, no one literally said "you cannot be PI because you are disabled"

However! 🧵

https://twitter.com/StarFeuri/status/1400829473143021569

What did happen was that repeatedly throughout my graduate studies, every time I wrote research protocols that engaged with autistic people (adults and children) directly, I had to justify how they were competent to consent.

That's right. I had to prove that autistic people are capable of understanding research and of having the agency to consent to participation. There's no two ways about it. This is institutionalized, systemic ableism.

One of the consequences of these biases in IRB reviewers is that qualitative research on the experiences of disabled people become more difficult to conduct than clinical procedures where some other, presumably competent, Parasocial agent consents on behalf of the disabled person

This means we get tons of research about how to predict, prevent, and "ameliorate" disability and very little that can contest this drive through disabled testimony, and most importantly, through disabled CONTROL OF RESEARCH.

These biases in ethical review about disabled competence bars disabled people from leadership in research aims. Participatory research with disabled participants is more difficult to approve than research which causes literal physical and psycho emotional distress.

The original tweet was a reflection on a time when I was told that I had to mark my participants "Autistic adults in college not under guardianship" as "decisionally impaired" which was in the same line as "comatose".m

Meanwhile I was "an autistic adult in college not under guardianship" but I was trying to be a PI. Was I then, by extension, not competent to conduct research?

This is what disabled academics deal with. This epistemic violence. This ontological invalidation. Every day.