This keeps my body in a state of induced remission from its autoimmune attacks on my peripheral nervous system, and means that — most of the time — my physical disability is mild enough to be invisible. Treatability and relative invisibility combined with the structural forces of silencing that run strong through institutions.
PhD in Anthropology: Program of Study | Department of Anthropology
This return to an appearance of normality allowed me and my educational institution to pretend that my body did not need to be accommodated during the research process. From one perspective, it was my own stubbornness and dedication to my project that erased my disability from view. Rather than changing my fieldwork plan, which involved over a year of living in Guatemala, I instead cobbled together different attempts at accommodation in the field.
I ordered IgG from a pharmaceutical company and instructed a local doctor on the infusion protocols. I tried a different medicine, cheaper and more accessible but with more severe side effects, and ultimately ineffective. I spent a week bedbound, brought food and care by the staff of conservation organizations with whom I was working. I traveled 10 hours each way to a hospital in Guatemala City, which administered the treatment. I spent countless more hours in battle with my health insurance provider, which only covered all of these attempts through reimbursement.
This strategy relied on further financial support from my family a stretch, but easier to bear than the much larger costs awaiting reimbursement , which I was extremely privileged to be able to draw on. But these grants were designed to support the research of an able-bodied graduate student; any support I might need in terms of my disability was my own to sort out.
I did sort it out, through a combination of family support and stubborn refusal to acknowledge the depths to which my diagnosis had changed my body and life. Many people have applauded my perseverance, holding up this narrative of personal triumph over the hardships of a disabled body. Slowly, over time, I have come to understand the limits of this perspective, which places responsibility for both struggles and strategies to overcome them squarely on my shoulders.
My desire to carry out a dissertation project as if I were able-bodied was overwhelming, but if anthropology has taught me anything, it is that such desires are structured by forces larger than myself.
I was not just stubborn, I was taught this. I was taught — and continue to be taught — that my disability should remain hidden. I saw mentors and senior scholars actively hide their own health conditions. The methods and proposal writing courses I took never addressed health questions, either mental or physical.
While the program offered no strict guidelines on fieldwork timing, both professors and senior students communicated that a minimum of 12 continuous months in a fieldsite was the normative expectation.
Call for Proposals: International Conference on Quantitative Ethnography
I was told that any less than this, or any different arrangement of time, would disadvantage me both in terms of my analysis and in my future job prospects. At no point during proposal preparation, grant writing, budget review, contract processing, or funding administration did accessibility or accommodation enter the picture.
I did not include questions of disability or accommodation in my proposals, nor I did not ask for advice on how to handle these issues. This was because these options were never presented to me as possibilities — I was mirroring the silence I had learned from my institution. I was lucky enough to have the rare PhD supervisor who took the time to check in on my health and well-being, before getting down to work.
This practice was essential to my ability to handle graduate school and a new, major diagnosis at the same time. Essential, but not enough. It did not give me the broader structural support I would have needed to design a project that was truly responsive to both my health needs and research interests. Disability is a blind spot in methodological training for ethnographic research.
I have since tried searching for information on disability and ethnography, but this always leads to ethnographies of people living with disability, not by them. The message is clear: those of us who live with physical disability can be the objects of research, or our disabilities can be visible if we write about ourselves.
But if we want to study something else, the difference of our bodies should be made to disappear, erased from research proposals, grant budgets, and publications. This message was driven home late in my graduate training, as my mostly-invisible disability became visible to a senior professor through my use of an elevator. Her response revealed the deep, unquestioned assumptions of ability undergirding anthropological methodologies, including the disciplinary staple of participant observation. What kinds of bodies are assumed in this participation?
What does it mean to be able to participate effectively, in which kinds of sites? How can field sites be made accessible, without placing additional undue burden on those we research with? I struggled through these questions in my own research to make it work, enabled by the sheer luck and privilege of family financial support, and strong emotional support from a network of friends and community.
I completed my dissertation, with my treatment rhythms and variable physical ability deeply shaping every aspect of my research.
People in the Guatemalan forest conservation institutions with whom I worked ended up knowing far more about my illness and its treatment than anybody at UCSC ever did. I have included acknowledgement of this in the book manuscript that resulted, but because I was so practiced at keeping my disability separated from my research, this is an introductory note rather than a deeper analytical theme.
Even as I now work against these structures of silencing, attempting to make my own disability visible, I continue to battle the sense that all of these struggles should be kept neatly out of view.
I have begun to experiment with collaborative ethnography as a form of accommodation, but have left the fact that this is accommodation out of proposals. Hiring a research assistant for the purposes of methodological innovation or graduate training fits funder guidelines; hiring a research assistant for disability accommodation does not. All three are simultaneously true; my silencing of the last protects myself while perpetuating broader silences. I learned to hide my disability in graduate school. As faculty now, I have a responsibility to help my own students navigate these issues, including the omnipresent possibility that acknowledging disability will lead to exclusion and discrimination rather than accommodation.
Anthropology, as a field theoretically committed to the pursuit of equity and understanding across difference, has a deeper responsibility to begin the work of examining and undoing the deep structures of ableism embedded at the heart of the discipline. Most immediately, anthropology departments can support graduate students by explicitly including questions of accessibility in all methodological and proposal preparation coursework and guidelines, including in graduate handbooks. This is a minor change that will make a major difference.
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