Thread by @DisabledAcadem

What is the reality of living on a PhD stipend for disabled/chronically ill students?

A long thread 1/18

Living on a stipend looked like turning down care, leaving meds at the pharmacy counter, prioitizing some health needs above others. It looks like losing countless hours to phone calls with hospital financing and insurance companies. It looks like refusing to go to the ER 2/18

I wonder all the time if it was worth it to lose doctors, care networks, and treatment options all to go to a top ranking program. In terms of income? No. In terms of benefits? No. In terms of future career options? No. 3/18

I loved pursuing history and disability studies in higher education. I felt so lucky to have the time to read and write and think. I have been so lucky to receive fellowship support. I've been lucky in every single area. 4/18

I've had a kind cohort, caring professors, a supportive advisor, and substantial fellowship support. The problem is that supportive people do not balance out systemic barriers. Those people couldn't grant me medical care or treatment or affordable options. 5/18

I don't have any horror stories from graduate school. And yet it was still a traumatic experience. I still gaslit myself the whole time. Every day was an "if I can just..." kind of day. If I can just work part time I can maybe afford my meds. 6/18

If I can just make more money I can afford an accessible apartment. If I can just get this fellowship I can move to a place with better doctors. If I can just get travel funding I can visit home for care. 7/18

But the reality is that I lived in an inaccessible apartment for five years. Because fellowship support is great, but doesn't pay for accessibility. The reality is that I often left CVS crying while the pharmacist asked me if I knew about good RX. 8/18

The reality is that I drove around campus endlessly looking for handicapped parking spots. And often had to walk far distances with tons of course materials because I hadn't beaten out other disabled people for one of the two spots available in my part of campus. 9/18

The reality is that I struggled with a lack of flexible deadlines in coursework. I struggled with access needs at conferences. I found out that there are no accommodations when it comes to historical field work or archival research. 10/18

Throughout the whole process it was up to me to know what I needed and to advocate for it. And I like to think that I'm a specialist in just that. I've read Universal Design for Learning materials, I've done DEI for a decade now. I have advocated for myself for forever. 11/18

But when you ask a first gen student to advocate for themselves in a system that is totally foreign to them, you will fail that student. That is my lived reality. That no one around me knew what to offer, and I didn't know what to ask for. 12/18

I'm wrapping up for defense now. And hopefully I'll have the courage to document these barriers. To speak candidly. To those who remain in the academy - I hope you can do better for your students. And to students currently struggling - I hope you know this isn't on you. 13/18

I had all the privileges of a top program, a medical school on campus, and a competitive funding package. And at the end of it all, the pro/con list is not balanced. For me, it was a poor investment to leverage my health for a chance to be a part of this system. 14/18

I'm so proud of what I've done. What I've written and created and produced. But I have produced it in the face of entirely unaddressed barriers. And that is my major issue with the #PhD. No one ever took responsibility for my living conditions or my well-being. 15/18

I was supposed to accept these conditions for the chance to be a part of higher ed. It was no one's responsibility to change student health care or demand funding cap increases or to make sure I had an accessible living space. And so I fought and failed alone. 16/18

I want graduate programs to take responsibility. I want profs who benefit from grad labor to question whether it's ethical at all to continue taking students. I want to reimagine programs where the conditions are supportive and even competitive. 17/18

I can't recommend grad school to any disabled or chronically ill student. It's not sustainable unless you have other sources of income or healthcare. Don't gamble your well-being in a system that will exploit you. 18/18 #AcademicChatter #PhDChat #PhDLife #Disability