by Hannah Kinsell (she/her)
MPhil/PhD Student at Goldsmiths, University of London
Anthways, 2022 © Hannah Kinsell
Am I an Anthropologist if… I am (dis)abled.
Picture this: you are sitting in a lecture hall, dim lighting, stuffy, eyes unfocused. You are trying to take notes on a subject that you don’t fully understand, using a framework created by a white man in the 70s. The lecturer is skipping slides too fast, so you have given up on writing notes. Luckily, your DSA has been approved so you own recording software. Unluckily, it takes you several hours to transcribe this recording after the lecture has finished, due to low processing speed. Very few people have told you how to take notes when your brain is different to the norm. If you have time, you could try and do some reading for the module tomorrow, but you can only get through half an article before chronic fatigue takes over. The lecturer has moved on. They are now explaining their own research, based in a place you would love to travel to. Is this “real” anthropology? Researching a faraway country in a faraway continent? Maybe you could do it, go somewhere you’ve never been. Then you think about the medical insurance, and the idea is quashed. You have no money to pay for that, how will you access your medication? Your support networks? How would this culture you are studying understand your disability? What would you do if you fell ill? Maybe it’s best just to stay at home.
I have a brain injury, left over from a grade four brain tumour, which cannot be physically seen, unless you look for it. It is difficult to articulate the difficulties and complexities of having an ‘invisible’ disability. The British government doesn’t seem to like it when you try to claim something they cannot see. My PIP (Personal Independence Payments) were taken away from me once they found that I was no longer wheelchair bound. I could stand and move for more than 20 metres independently now, so it was about time I was struck off, albeit my chronic fatigue that I have to live with for the rest of my (statistically short) life. However, I am apparently disabled enough to claim for DSA (Disability Student Allowance), which is comforting. I also have an Alton Towers ride access pass, which is pretty cool.
My disabled identity seems to be constantly in flux.
If you can’t see it, it’s not there.
“You don’t look disabled.”
How many times do I need to explain my disability until people believe me?
What does a disabled person even look like?
“You’re not really disabled though, are you?”
“I forget everything too!”
“Sorry, we need proof.” Are my neuropsychology clinical reports not enough? What about the NHS letter detailing my entire diagnosis?
“You don’t have cancer anymore though, do you?”
“You’re in remission? So you’re all better now?”
On hard days, I doubt myself. Am I even disabled? Am I making it up?
I am disabled, but I am not disabled enough.
The fact of the matter is, I have not seen one disabled anthropologist being celebrated, nor have I heard about any efforts to focus on disability studies in anthropology. I am concerned with the lack of representation of disabled anthropologists in academia. There is no framework that argues what an anthropologist should look like, talk like, be like. Recently, there has been a push towards the idea that communities should be considered the experts of themselves, instead of the outsiders that perceive them. Can we attempt this as a community? Can we move away from the medicalisation of disability and define ourselves? Some anthropologists have already paved the way for this to happen. Gelya Frank wrote a book named Venus on Wheels (1982), in which Frank provided a personal perspective of the life of an American woman named Diane DeVries, who was a congenital amputee. Devlieger argues that
[w]here previous studies had focused on symbolic descriptions of disability by outside observers, Frank’s portrayal of DeVries’s personal perspective was part of a wider shift in anthropology from objectified representations of the body to subjective experiences of living through the body. This approach highlighted the lived experience of disability: Frank questioned common perceptions of DeVries as someone who was missing arms and legs and considered instead DeVries’s personal experience of ‘normalcy’Devlieger, 2018, pp. 3
Medical anthropologist Joan Ablon’s work on the lives of stigmatised groups of people with genetic differences, such as the ‘little people’ of America (1984), also helped to broaden the field. Her ethnographic approach focused on
their support networks and strategies of normalization, privileging the lived experiences and voices of her research participants. Her work has been considered pioneering for shifting the focus from individual bodily difference as a source of disability to the social reactions of the community as disabling. Her ethnographic focus contributed to broadening the scope of disability studies beyond the therapeutic interests of medical anthropology for the study of disability and behavioural, cognitive, or physical differenceDevlieger, 2018, pp. 4
What I am hoping for is more autoethnography, more voices from the disabled community, and more accessibility in the world of Anthropology.
Regardless of my doubts and frustrations, whether I am disabled “enough”, I still identify as disabled. Where do I fit? Can I be perceived as an anthropologist? Will I be identified as a disabled anthropologist and nothing more? Am I defined by my disability? I finish with Wool et al.’s article ‘What I Wish I Knew about Anthropology and Disability’, which highlights the ableism that structures anthropology, specifically in AAA (American Anthropological Association) meetings. The three of them crowdsourced list of wishes, desires, and critiques from disabled anthropologists, and they have almost pinpointed exactly my internal thought processes and understandings as a disabled academic. Here are some of them:
I wish that I had known that anthropologists still seem to hold onto the belief that disabled anthropologists can’t do field work, well, at least not real field work.
I wish I had known that I would be pressured to frame my research on disabled people as inspirational.
I wish I had known that disabled people don’t fit the classic model of anthropologists, and I would have to spend energy making space in the discipline for myself.
I wish I had known that I would be ideologically (in addition to physically) unable to do fieldwork in a setting where access for physical disabilities is limited.
I wish I had known that while my graduate advisor and my colleagues think disability as a category and experience is “interesting,” they are not so invested in the real world political, economic and social stakes of living with disability or in working towards accessibility in the classroom and in the discipline as a whole.
(Wool et al. 2018)
Devlieger, C. (2018) ‘Disability’, The Cambridge Encyclopedia of Anthropology, pp. 1-18, [Online]. Available at: http://doi.org/10.29164/18disab.
Wool, Z., Friedner, M. and Kasnitz, D. (2018) ‘What I Wish I Knew about Anthropology and Disability: Notes toward a more enabling anthropology’, Anthrodendum, 10 January [Blog]. Available at: https://anthrodendum.org/2018/01/10/what-i-wish-i-knew-about-anthropology-and-disability-notes-toward-a-more-enabling-anthropology/ (Accessed 15 June 2022).