I did not know before I entered academia that my multiple invisible health conditions would become a source of fascination. When people find out the extent of my ill health, they tell me I’m brave and inspiring. I’m brave to get out of bed, to do my PhD, to have a passion for life. Of course, I am proud of my achievements – I am a doctoral student in Anthropology, in my first year I presented my findings at Oxford University and have just returned from being a Visiting Scholar at The University of Cambridge. My goals are not small. On paper, I have conquered limitations and surpassed everyone’s’ expectations, particularly my doctors’. Positive sentiments are not ill intended; they are meant kindly. Being an inspiration to others is meant to encourage me on the bad days, and while I usually accept such admiration with a smile, the problem is that it reinforces a narrow able-bodied version of success with specific terms and conditions that sit heavily on my shoulders.
Not only endemic to academia, it seems that a (disabled or not) person’s worth is dependent on their ability to be successful. In academia, this involves making important research contributions, publishing, being theoretically innovative, an inspiring teacher, and reaching specific quotas. In this neo-liberal infrastructure, there appears little room for negotiation. Admitting difficulties, requiring help, or not managing infers a lack of courage when one lives in a society where braveness and attaining one’s goals is the epitome of success. But these goals are not very diverse or malleable, particularly for disabled people.
It reinforces the idea that if I can succeed in an able-bodied version of success, then I am in turn successful. I have known many (visibly and invisibly) disabled students and some academics, included, who go above and beyond what others around them do, with the motivation of making others forget about their disabilities to begin with, particularly those with invisible disabilities like myself. But what happens when you cannot perform the very tasks that people deem you brave for? I have become so used to being defined as brave because I defy my disabilities (to varying levels of success), that when I have bad days or health relapses, I feel like a failure. I have become convinced that I will be found out as one that lives in but does not fit into an able-bodied world. So, like countless times before, I borrow energy from the next day, and when I get home I lie in the dark, in bed, unable to move. At one point when the ableism was so internalised, when asked by others if I could manage the stairs, I found it easier to smile and say yes than be truthful: that it costs me too much energy. Only recently, I had no choice but to use stairs at a prestigious university because of the lack of accessibility, which left no doubt as to what type of bodies are valued over others.
I am certain if I told anyone what my daily challenges were, they may struggle to understand how I function, and whether I can succeed in the roles I have in life - as a daughter, aunt, partner, sister, friend, and doctoral student. Or perhaps, I would be deemed more courageous. Which brings us to the present. Shortly after returning to New Zealand, a relapse of one of my conditions left me bedridden and housebound, needing help with daily tasks and using a wheelchair because walking was too challenging. If we compare my current state to the criteria that makes me brave in the eyes of the able-bodied world, then what am I now? Have I lost the bravery people associated with me? Perhaps.
Slowly, I am learning that bravery is subtle and nuanced. We are wrong to define it by actions or the ability to overcome challenges. Disabled people do not want pity, nor to feel like others are impressed with us because we strive to be good scholars despite disablement. I am not brave because of what I can or cannot do. Rather, bravery is found in the words “I need help”, “I cannot do this”, “I need time”, and “I need support”. It is found in the efforts of sitting up in bed, of laughing at the absurdity of rain when you used all your energy to put out the washing, and it is found in the tears when the pain and fatigue feels bone-crushing. Yes, it is brave to do a PhD, to keep going even if it feels too hard. However, it is equally as brave to ask for assistance, and personally, strive to find a way to ‘do’ academia differently with flexibility rather than masking the very challenges that make me passionate about my research in the first place.
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