April 12, 2018
Down House, Downe, Kent, England. Author: Glen. CC BY 2.0
Darwin was ill for much of his life, largely restricted to his home. His mysterious illness was managed with rest and strict routine with work but also a beloved walking path and intimate family time. I don’t think I’m the next Darwin, but I reached for his example when managing my own illness. I learned to accept my physical symptoms, to deal with the emotional and physical fallout of severe pain, to order my days and relationships and career around the time and routine required to manage my illness. I even grew to appreciate some of the skills I gradually gained: an ability to enjoy the pleasant while acknowledging the painful, to let go of bad experiences and focus on the present, to use the tech skills I gained while homebound to reach out and pull people together, to value kindness and care more highly than ambition or cleverness, to communicate about difficult topics clearly and patiently.
But Darwin’s example failed me when it came to disability. Darwin was independently wealthy and so could research at the pace he chose and fund his own work. Domestic labour and the careful crafting and maintenance of an environment where he could work despite his illness was done by servants managed by his wife Emma. I hired someone to help me around the house only when I became physically unable to do chores, but on an unpaid medical leave, it was a financial burden I could not bear for long. Now that I am strong enough to change my own bedding, the energy and time required eats into the limited hours I have for my own research.
I face strong structural barriers to becoming a scientist, to working at all.
I have built and sneaked and bludgeoned and lucked my way through some of these difficulties. When my year and a half of medical leave was not only unpaid but triggered additional expenses from the university, I used my savings and worked a few hours a week building a website and relied on the generosity of friends. To stay a part of my lab community when I became unable to travel to campus regularly I set up a group chat that became an important part of our grad student culture as more of us had to begin working remotely. When the unpredictability of my illness kept me from teaching and outreach activities, I doubled down on writing online and even got the rest of my lab involved in a group blog to communicate our lab’s research. When my professional relationships suffered from my inability to attend physically demanding and inflexibly scheduled seminars, conferences, and workshops, I turned to recordings and conversations online.
But there is only so much I can do to adapt, and time and money are always a problem. I struggled to complete my undergraduate degree because I was too sick to go to school full time and too poor not to work throughout. As a PhD student, I fail to meet expectations of long (or at least “normal”) hours and associated productivity because my illness not only leaves me unable to work for approximately half of each month, but also requires a several hours a day to manage. A great deal of labour in the medical system is outsourced to patients, leading to hours every week spent navigating appointments and insurance and paperwork. Medical expenses also eat into my funding. To get accommodations requires hours of paperwork, meetings, and appointments. When those accommodations are approved, I must take the time and gather the resources to implement them and my power to do so is limited. See: my accommodations allow me extra time to complete my PhD, but were considered irrelevant when I tried to apply for time-in-program restricted funding at my university.
Chronic migraine is difficult to experience, but my most painful struggles are with disability. A non-disabled body is one that can work and one that can do so in some standard environment and on a standard time table. I am a good scientist. I can do good and meaningful research. But I cannot do it for 40 hours a week under bright lights after a noisy bus commute. And, terrifyingly, there is a threshold where I am too sick. At some point, the cost of allowing me to contribute is considered too high for other people. At some point, it will be too much even for me, even if I weren’t constantly fighting institutional and personal ableism.
This post inspired in part by Sandy Olsen’s recent excellent article on disability representation in film.