On Being a Disabled/Chronically Ill Graduate Student in a Global Pandemic
By: Jaclyn Swiderski
I was sitting at the Blaze Pizza right next to campus when I got the email last March that our spring break was going to be extended by a week. I didn’t know then that school would move all online for the rest of the semester, or that that day would be the last time I would see my students in person for over a year (if not more). As I sat and celebrated the news of some extra time off with my friend and partner, I had to keep getting up and running to the bathroom. My body had developed a nasty habit of throwing up every time I ate, and I had to rinse my mouth out. I remember looking at myself in the bathroom mirror, and saying: “Well, at least now I don’t need to drop out of grad school.”
2020 was of course a hard year for everyone, but it was perhaps especially hard for disabled and chronically ill people. Even before COVID-19 reached Nebraska I was having a bad year. My ever-growing list of diagnoses just seemed to be getting longer, and I was having to miss more and more classes for more and more testing. In January alone I had a colonoscopy, endoscopy, and liver biopsy done. We didn’t know why food couldn’t seem to stay in me for long, or why it caused such excruciating pain while it did stick around. We also didn’t know why my entire body pulsed with pain, or why my migraines started coming back every single day. Despite all of these health issues, I walked the mile each way to campus every day, taking three courses and teaching two. There were days that my fatigue was so bad I would fall asleep at my desk and only wake up when one of my office mates came in, or that my pain was so bad that I couldn’t speak in my seminars. When COVID first hit, I breathed a sigh of relief: At least I don’t have to deal with all of that anymore.
Of course, what I was handed instead of all of that was a global pandemic that exposed our country’s deeply ingrained ableism. As a disabled/chronically ill person, I knew that this ableism existed, but I couldn’t have imagined the scale of it. When the pandemic first started it seemed to give everyone permission to be ableist. The refrain that I heard again and again and saw plastered all over social media was that COVID “only killed old and sick people.” As Andrew Pulrang writes: “Members of Congress openly argued that high-risk Americans should be willing to die in order to keep the economy humming. The general public was told not to worry about Covid-19 because it would mainly harm people with ‘pre-existing conditions.’ In fact, Covid skepticism itself is strongly influenced by the idea that the virus is really only a problem for others, namely elderly, chronically ill, and disabled people – as if that makes it less of a problem.” On top of this, when disabled/chronically ill people did get COVID, they were often denied access to medical assistance such as ventilators or they were pressured to sign a DNR (do not resuscitate order), as doctors tried to do to Sarah McSweeney. The message that has come across the entire pandemic, and that is still coming across in vaccine rollout, is that disabled and chronically ill people are necessary sacrifices for the country - that a disabled/chronically ill person could never have the “quality of life” that an able-bodied person has.
As a result of my specific cocktail of conditions, I am considered high-risk for COVID. When school was coming back in fall 2020, I had to “prove” this disability status to the university with a letter from my doctor so that I could teach online. I called his office, and his nurse bluntly told me that he would not write me a letter. That as long as I was ten feet away from my students instead of the CDC recommended six feet I would be fine; as if COVID particles couldn’t possibly traverse those extra four feet, as if it would be okay if I got sick. I spent my summer worrying, once again, that I was going to have to drop out of grad school - this time because I could actually die if I was in the classroom. Luckily, the chair of our English department gave me an exemption from teaching in person without a doctor’s note. I ran into an issue with the university again when I needed books from the library in order to complete my comprehensive exams. I needed to avoid campus at all costs, but the library told me that I had to be the one to pick up the books, and I was put in the situation of having to decide what was more important: my health, or finishing my exams. Again, luckily, I have great friends in the department who offered to pretend to be me to pick the books up. I ended up having to order the books through my partner’s library account and have him go pick them up for me. In both of these situations, I got lucky. These experiences made me think about all of the other disabled/chronically ill graduate students across the world who were not as lucky as me. Those who were, and still are, being forced to teach in person classes, who don’t have someone to go pick up a book for them at the library, who don’t have a supportive advisor who lets them skip class to get their testing done.
Being a disabled/chronically ill graduate student during this pandemic has revealed cracks in the multiple systems that I interact with daily: the university system, the medical system, and our government on both state and federal levels. Disabled/chronically ill students and teachers deserve the accommodations that they need. They deserve proper medical care. They deserve these things whether there is a global pandemic or not, and there is no such thing as being “disabled enough” or “sick enough” to deserve an accommodation.
Wear a mask. Get vaccinated when you can. Follow disabled/chronically ill creators such as Annie Segarra (@annieelainey) and Jennifer Brea (@jenbrea), who have been talking about these issues for years. The pandemic has revealed a lot of issues, but that also means that we now have an opportunity to fix them. Listening to and amplifying disabled/chronically ill voices will help us rework these systems and get rid of the idea that disabled/chronically ill people are disposable. After all, isn’t breaking down and rebuilding systems what a PhD in English is all about?