In Grade One, my teacher asked the class what we wanted for Christmas. I replied ‘school on Saturdays’. Unsurprisingly, this did not make me popular with the other kids.
Today, I’m enrolled in honours part time. I’ll write my thesis next year, most likely in design anthropology. I can only study part time because I have a vision impairment. I can’t read for more than a few hours – but even a couple of hours is taxing, and I need to take constant breaks.
I first noticed this problem when I was typing an essay in the library. It was one of the final essays for my four-year degree, which I finished over five years. The black of the font and Word’s white background started to merge.
When I started having these vision problems I was writing a 3000-word illness narrative for a medical anthropology class.
I had interviewed my mum, who was diagnosed with multiple sclerosis (MS) before I was born. MS involves losing control of the body. Progression can be gradual or erratic, with sudden episodic lapses, and other periods of stability.
After years of warning signs, the disease started affecting mum when I was in primary school. Many of my early memories centre around her episodic lapses, which were confusing and scary. Reliving this through an interview, and for anthropological purposes, was jarring.
People are more likely to get MS if one of their parents has the disease, something I have long been aware of. Vision loss is a common warning signs. So, when my vision started deteriorating, all while writing this illness narrative, it was confusing and scary.
To get an extension on the assignment, I needed paperwork. I went to a doctor and they filled out the forms. The doctor couldn’t measure or gauge my problem. Perhaps she only trusted me because I was so visibly distressed.
Writing the illness narrative, I was thinking about biological citizenship. In her ethnography of people affected by the Chernobyl disaster, Petryna (2002) uses the concept of biological citizenship to understand how those affected by the disaster sought recognition from the state, based on biological (i.e. health) damage.
The concept was proving useful in thinking about mum’s illness. There were times she struggled to receive recognition from doctors or government agencies, in order to receive various assistance. It was clear these struggles for recognition many times seriously affected her health. Mum was clearly scarred by the sense of uncertainty that came with processes of receiving recognition.
After the doctor completed the paperwork, I walked back to the anthropology building. Meeting my medical anthropology lecturer along the way, I handed her the paperwork, and without any warning burst into tears in the corridor.
After many years reveling in anthropology, it felt like the world of learning had collided with my embodied anxiety. The two worlds collapsed. I couldn’t finish my essay on mum receiving recognition, and at the same time my own sudden illness was being abstracted through a process of recognition, materially present in the paperwork I was holding. Triggered as I was just by writing the illness narrative, it wasn’t clear if I was having the first symptoms of MS myself.
I don’t have anything poignant or uplifting to say for a tidy conclusion. I hope my eyes get better, because I love reading. Anthropology has given me a means for personal transformation. Studying anthropology has radically changed my life, and I’m confident it will continue to do so. I need to keep reading.
I hope that after reading this, you might be shaken into a deeper appreciation, into a deeper acknowledgement, as to how lucky you should be to spend a few years reading anthropology. Would you read differently if you were losing your vision?
Petryna A 2002, Life Exposed: Biological Citizens After Chernobyl, Princeton University Press, Princeton.