A Reflection on Chronic Illness and Graduate School

I originally wrote the post below in June 2011. I had finished defending my PhD in English Literature in the fall of 2010 and I was depressed, in pain, and struggling with my transition out of academia. When I read my words now, I still feel the anger and hurt but the passing of time has helped me to better understand and make peace with my experience of being chronically ill during grad school. A lot of wonderful (and difficult) things have happened since 2011, and I am still finding my way in the world, which includes a rejection of identifying as abled-bodied (I feel that I exist in the nebulous space between the binary poles of abled and disabled). Part of the process of making sense of my experience has been engaging in disability studies and science fiction as an independent scholar. I am heartened to see that a resource like PhDisabled exists for all of us who don’t fit into academe’s rigorous mold of able-bodied production.

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As I make my way through The Prosthetic Impulse, a special collection of essays on the “prosthetic” edited by Marquard Smith and Joanne Morra, I am again reminded that I am still a visitor to the field of disability studies. I know that when it finally comes time for me sit down and write about the representation of disability and people with disabilities in science fiction, I must attend to my own position as reader, critic, and chronic pain sufferer. This is a task that I feel a great deal of apprehension around. While I suffer from a chronic pain condition that is at times disabling, I do not identify myself as a person with a disability. In all visible and general day-to-day aspects, I am able-bodied.

Such a demarcation between abled and disabled was not always there for me. At the height of my health problems, I felt distinctly apart from everyone I knew. I was ill enough at one point in my doctoral education that I missed a year. Not literally “missed a year” of course—I am not a time traveler—but certainly I lost out on a year’s worth of socialization and professional development. While the inability to participate in academe was difficult enough to deal with, the blow that came to my ego was worse. You see, nobody seemed to notice my absence.

I lost contact with many people whom I had called friends. Some could not or did not want to engage with me. People would call or email once, then never again. My illness made the distinction between a friend and a colleague crystal clear. I particularly remember a staff member, a person I normally chatted with several times a week, off handily remark that they hadn’t seen me in a while—I had been away for nearly six months. It was completely and utterly soul crushing to realize how unimportant I was to the function of the university community with which I had whole-heartedly identified.

I fell through the space in people’s attention that the business of academia always hurries along to the next deadline. My peers had their own studies stressing them. The faculty were pressed for time to give to the present and able, never mind the absent and ill. I went from feeling that I was an essential working member of an educational and research institution, to an easily replaced cog in the machine. All the doubts and suspicions I had about my suitability for a career in the academy were made truth. It was a dark time for me that I still am trying to comprehend and accept.

It was during the time of my illness that I learned the actual value of a graduate student (at my Canadian institution): 2 units (undergraduate students are worth 1 unit). That means 2 units worth of government funding. No amount of research, writing, and committee work could change my value in the scale of the system. In the very same conversation that I learned my unit worth, I was told that I had two options to deal with my illness and studies: I could take an unpaid leave of absence or I could continue to struggle through. The advice was: keep struggling. No other help was offered. As I was completely dependent on the small income I received from the university from working as a Research Assistant (a smidge over $1000/month CAD), there was little real choice. I took the advice to keep working as all good “2 units” do.

The experience of being ill transformed me as an academic. I looked at the thesis project I had strategically designed for my future employment in academe and scrapped it. I started researching feminist science fiction and theories of the vulnerable body. I changed supervisors. I refused to renew the lost “friendships,” and instead strengthened the relationships that had seen me through my missing year and sought out new alliances. I spoke loudly about my dissatisfaction with graduate education. I refused to publish. I pursued career building opportunities outside of my department. I still participated in the academic community (if only to find avenues to voice my dissent and improve conditions), but I no longer celebrated my role in it.

Once, near the end of my studies, I was told by a prominent faculty member that I was highly thought of within the department and that they were sorry that this esteem was never shown through funding. Instead of feeling honoured by the compliment, I was angry. Where was this good will when I was sick and struggling to pay the bills? If my experience is that of someone well-liked and respected, there is something deeply wrong with the current state of graduate education.

I only made it through that missing year and the difficult ones that followed because of a small handful of people (those of whom I have thanked and will continue to thank). Completing the PhD while suffering with chronic pain and living at the poverty line was not easy. I’m still so angry about it all. Raging, in fact. My anger is directed at all the tenured faculty who risk nothing to change the system that hurts the grad students with whom they work side by side; at my peers, who landed large funding packages and thought themselves better academics for it; at the university, who keeps bringing in naïve and willing graduate students without arming them with marketable skills; and finally, I’m angry at myself for … I’m not even sure what exactly because the hurt and pain and righteous indignation run so deep.

My feelings about illness, research, and graduate school are intertwined. It is difficult for me to determine where one thread of pain begins and the other ends. Everything is knotted up with issues of class and ability. I am still trying to sort it all out. Generally, I’m a happy and optimistic person, but as I move farther into my independent research, the scars I have from my time spent in grad school demand exploration and healing. My hope is that by writing about my experiences, I might be able to connect with others who had similar journeys. I can’t be the only one…

 

Kathryn Allan is a Canadian-based independent scholar of feminist SF, cyberpunk, and disability studies. After completing her PhD in 2010, she set off on her own and now runs Academic Editing Canada. She is editor of the interdisciplinary collection, Disability in Science Fiction: Representations of Technology as Cure (2013, Palgrave MacMillan), and the inaugural Le Guin Feminist Science Fiction fellow (2013-14).  She is an Associate Editor and Reader of The Future Fire, and her writing appears in both academic and creative publications, such as The WisCon Chronicles Vol. 7 (2013), Outlaw Bodies (2012), and the forthcoming collection, Techno-Orientalism (2015). Kathryn blogs and tweets as Bleeding Chrome.

Image: ‘Light Tunnel Detroit’ By Steve Hopson via Wikimedia Commons, licensed under CC BY-2.5.