On Being a Diabetic Academic

By Alicia Matz

Posted December 9, 2020

26 years ago, at the young age of 2 years old, I was diagnosed with Type 1 Diabetes. The doctors told my parents two things: that the only things I wouldn’t be able to do were serve in the army or drive long haul trucks, and that they were hopeful for a cure within twenty years. Boy were they wrong on both accounts. My thoughts today are not about finding a cure, but how the ‘you can do anything’ mindset when it comes to Type 1 Diabetes is detrimental to all diabetics, specifically in academia.

It all started with a tweet. Specifically, this tweet from a fellow diabetic:

lindsey @txdiabetic, 10:55am Dec 1 2020 Twitter for Android

can we start telling kids w t1d that they are disabled. the realization of that as an adult was unnecessarily uncomfortable thank you

This made me reflect on my childhood. While growing up, my parents never let my diabetes get in the way of me having a ‘normal’ childhood. Sure, they always accompanied class field trips ‘just in case,’ my baby sitters were always either my grandparents or my diabetes doctor herself, and I did get certain privileges at school, like unlimited bathroom breaks and the ability to cut the lunch line if necessary. I’m sure I had a 504 plan, but to this day I don’t know what was in it. This was all fine and dandy, but it set a weird precedent for me as I became more independent in college and beyond.

Specifically, the ‘you can do anything’ mindset gave me the mentality that my diabetes was my problem and I should deal with it on my own, rather than seek accommodations. Even in the semester when a new (unrelated to diabetes) medication caused my blood sugars to be over 400 most of the time, no matter how much insulin I gave myself. Sure, I told my professors I was diabetic, so that they didn’t get angry if I ate in class or had beeping machines. But I took tests, wrote papers, and attended lectures feeling awful while thinking ‘well this is just diabetes.’ I ‘saved’ my sick days, going to class with a cold or whatever because I knew that there was a possibility I might need to use them all if I ever had to go to the hospital. But it was fine, everything was fine—I got into grad school and graduated in once piece.

It wasn’t until grad school that I really realized the toll that diabetes was having on my life in academia. In addition to being many other things, grad school is particularly ableist, and because grad school should be ‘rigorous’ no one has thought to change anything about it. Imagine being told ‘you can do anything’ and then entering an environment where everything is intentionally designed to make you struggle. Getting the same amount of work done as my peers took so much longer because my diabetes was still ‘my problem’ and if I could get through college without accommodations, I could get through grad school as well. And my own insistence that my disability was my problem meant that even when it came to informal accommodations, a lot was put on me to make it work. But finally enough became enough, and I joined up with the CripAntiquity community. I started advocating for the culture of grad school to change so that people like me didn’t have to continue to do so much extra work to get through grad school.

 And yet, I still haven’t embraced my disability. I still haven’t applied for any accommodations, even in the current pandemic. I started the process, but was lucky enough to get remote work and to be officially out of coursework. I do plan on pursuing the accommodations in the spring semester, especially as my university insists on in-person teaching and my doctor says I should be remote until the pandemic is over. It is better to be safe than sorry.

If you are like me, and dealing with a condition in which the majority opinion is ‘you can do anything,’ please take a moment and reflect. You don’t want to make the realization too late that yes, you are disabled, and it is not ‘on you’ to deal with your disability on your own. You are entitled to all help you can get—seek it out before you burn out. But at the same time, it is not on us disabled folks to do all of the work to make our lives fit into what is considered ‘normal.’ I encourage grad programs to reach out to their students and take seriously the requests they make, in addition to consulting and implementing some of the steps outlined in CripAntiquity’s ‘Making Grad Programs More Accessible’ document. Grad school doesn’t have to be inaccessible to be ‘rigorous’ and we all can do our part to make sure academics with disabilities don’t experience the same.

Alicia Matz can be found at BU and on Twitter @duxfeminafacti9.