Becoming Disabled: Part 1
CW: depression, suicidal ideation
People often ask me why I decided to work on autonomy in healthcare. After all, my mostly continental training didn't focus on applied ethics, and I always thought bioethics meant researching reproductive rights or end-of-life care. I "grew up" thinking I would end up working in political philosophy, but life had other plans for me. There are two ways I could tell this story: the academic narrative and the personal narrative, but, really, they are intertwined. One day I may tell the version involving a Thomist with a post-modern bent who introduced me to Spinoza and a detour via an MA on indirect morality in Kant, but today I want to talk about the context of my intellectual journey.
For as long as I can remember, I have been exhausted. Some days are better than others, but from ages 10 to 13 there were days I had many bedbound days. I was diagnosed with juvenile arthritis, but none of the lab results could explain how my low level of inflammation correlated to such a high degree of pain. Fast forward 3 years of physiotherapy, I was sick and tired of explaining to my peers why I couldn't participate in sports and, by the time I went to university, I decided to stop disclosing why I needed so much time to rest. I started overcompensating, juggling fulltime study with a part-time job (full time in the summer), student council, and volunteering trying to prove to myself I wasn't lazy. I joined a gym and worked out until I puked, kept up my grades even if it meant putting in three times the amount of work, and I regularly presented my research at conferences until I couldn't anymore.
In my 3rd year of undergraduate, I had pushed myself so hard that my body shut down and I fell into a deep depression. My doctor diagnosed me with myalgic encephalomyelitis (M.E.), also known as Chronic Fatigue Syndrome and told me to stop everything: school, work, volunteering, which shattered my whole sense of self. My whole identity was built around being an over-achiever; I knew my body wasn't "normal", so I invested everything I had into developing my mind, and suddenly even that broke down. I was even unable to watch television without suffering from migraines, let alone read academic research. My university was very understanding and granted me an extended leave of absence, but I broke down for almost an entire year and regularly thought about killing myself. Having a diagnosis helped, but I learned the hard way that it doesn't dissolve a lifetime of internalised ableism.
Obviously, I'm still here, with almost three degrees under my belt, but this is not an inspirational story. I may have earned the bells and whistles valued by society, but trying to fit into an able-bodied mould almost killed me. It took years of therapy and discovering a community of other people like me before I finally owned it: I am disabled. Once I accepted this, everything became clear. My research interests, how much I value collaboration, my affinity with feminist theory and the disruption of mainstream rationality; my whole academic identity was put into context. I had been hacking my way around traditional philosophy for years, but I never thought it was because my mind was wired differently. I always assumed that I couldn't possibly be disabled because I wasn't a wheelchair user, but this is also a vestige of ableism. The amount of energy I spend every day trying to "pass" means I don't really fit in.
Next time, I will go into how this shift in my self-perception changed my approach to teaching.