Ethnographic Ableism: Structural Silencing of Physical Disability in Anthropological Research

Note: This account draws on my personal experience as a scholar living with chronic illness and variable physical disability. I write from the specificity of one particular experience, which may share points of connection with other forms of disability, but does not capture the variation of those experiences.

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Despite growing attention to the body in ethnographic methods, only some bodies are allowed to appear. The normative frame for anthropological field research – typically involving a year or more of living in an unfamiliar location – is inaccessible to those with chronic illness or disability, or who otherwise require frequent access to medical care. My ethnographic methods course in graduate school defined the body as an “idiosyncratic knowledge apparatus… your major technology for ethnographic learning.” Yet the course offered no acknowledgement of differently abled bodies, nor how research methods might respond to differently structured health needs. Instead, disciplinary celebration of hardship and survival narratives in relation to fieldwork in “remote” or even dangerous places is widespread, even as critiques of these narratives move increasingly to the center. Federal American with Disabilities Act (ADA) guidelines for institutions state that reasonable accommodation be made to ensure accessibility for people with non-normative health needs; in university settings this is most often organized around classroom learning, or for on-campus research spaces like laboratories or libraries. These accommodations are patchy at best in most places, and available only upon seeking them out, which serves as its own form of barrier. Moreover, practices that maintain a cloak of confidentiality around disability accommodation serve both as protection and as reinforcement that there is something to be protected against: rampant discrimination that still views disability as neediness, laziness, or insufficiency.But ethnographic research, particularly with anthropology’s continued emphasis on distant sites, remains a blind spot in even these minimal accessibility structures. Who holds the responsibility to provide reasonable accommodation in this case? While it would seem to be the university, as employer and/or educator of researchers, what does this look like in practice when research increasingly relies on funding from external institutions? Should universities provide the additional labor and funding to enable ethnographers to conduct their work? Should it provide support in the form of guidelines and recommendations for how to include this in grant proposals? Should granting agencies be responsible for including language and guidelines on accommodation requests? The fact that responsibility is unclear is part of the problem – this pushes responsibility onto researchers themselves, including graduate students and faculty of all ranks and status.

Developing a proposal, developing an illness

The first two years of graduate school are tough. You are asked to immerse yourself in a field while proposing ways to intervene on it. At many schools, including the University of California, Santa Cruz (UCSC), which I attended, you are required to teach an average of 20 hours/week while juggling your own coursework, proposal writing, grant applications, and exam preparations. These are years broadly characterized by exhaustion, anxiety, fits of imposter syndrome, and the stressful process of developing an intellectual voice.As I navigated these first two years of my doctoral education in Anthropology, I was also undergoing the slow process of realizing that I had a serious neuromuscular disorder, then seeking diagnosis and treatment for that condition. The former was an understanding that dawned slowly, culminating in the spring of my first year at UCSC when my powerful internal denial finally gave way to the realization that the weakness I was experiencing was far more than being “out of shape.” I was quickly referred to an off-campus neurologist for diagnosis, but because my condition is rare and easily confused with others, it took another six months before my doctors finally landed on a diagnosis.These six months overlapped with a month of department-funded preliminary fieldwork in Guatemala in summer 2009, and with the fall quarter of my second year. That fall, I honed my dissertation proposal and funding applications in a grant-writing course, working at the intersections of environmental anthropology and Science & Technology Studies (STS). I also visited multiple hospitals and doctor’s offices in Santa Cruz and in San Francisco (which was tricky, as I did not own a car), getting spinal taps, nerve conduction studies, MRIs, blood work, and other medical tests. It never occurred to me – nor to my instructors, some of whom knew that I was undergoing this process – to allow the latter to affect the former. The stress of navigating all of this at once intensified my symptoms, although they continued to come and go in unpredictable relapse/remission patterns. I bought a cane, my first step towards acknowledging my own need for accommodation. I took the only “incomplete” I have ever taken, extending the length of an independent study course in a blow to my academic ego, though this too was a necessary accommodation. In December 2009, during the whirlwind of finals week, I finally received my diagnosis: Chronic Inflammatory Demyelinating Polyneuropathy, or CIDP. I was told that CIDP was treatable, if not curable, and was set up for the first round of what would become a defining rhythm of my life: monthly intravenous infusions, consisting of massive doses of human IgG antibodies. 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. 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.

Making it work: the perseverance narrative

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 bed-bound, 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.After several months of damaging my health and my family’s savings in an attempt to make my fieldwork “normal,” I eventually settled on flying back and forth to the USA once a month for treatment. 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. I had won two external fieldwork grants for this research, from the National Science Foundation (NSF) and the Wenner-Gren Foundation, in addition to multiple pockets of research funding tapped from within UCSC. 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.

Structural Silencing

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. 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. 

Ableism in Ethnographic Training

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. Some auto-ethnographic work blends these two perspectives, but any discussion of non-normative bodies conducting research on something other than themselves is rare enough that I haven’t found it (one exception is Bennett 2013, who focuses on speech disability in ethnographic practice). 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. She asked, “do you need it, or just don’t feel like taking the stairs today?” When I explained that my body was, indeed, marked by non-normative needs, she immediately responded by asking whether I had considered medical anthropology, and perhaps I should switch.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.

Moving Institutions Forward

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. Professors need not be experts to begin this discussion – simply mentioning that all researchers will approach their projects with different healthcare needs would be a huge step forward, allowing students to work through their needs rather than hiding them from view. Even without concrete models for accessible research, this acknowledgment would make it easier for students to ask for support and guidance.At the institutional level, universities can alter research funding structures so that payments are up-front, rather than reimbursement to reduce students’ financial precarity, which is often multiplied by disability (this could be essential for adjunct or other non-tenure track faculty as well). Universities can contract with health insurance providers that offer coverage beyond urgent or emergency care outside their own countries, for better support of researchers (student or faculty) working elsewhere. Through their accessibility offices, universities should assist researchers with finding health care providers and navigating insurance claims when necessary as part of off-campus research. Research support offices should also provide support, including offering clear information about which agencies or institutional bodies are responsible for providing accommodations, and how to access these structures.Finally, funding agencies should provide clear statements related to accessibility, including whether or not funds can be used for assistive devices or other accommodations necessary for field research, which expenses do or do not qualify, and the contact information for a person who can assist with answering specific questions or concerns. Wenner-Gren, for example, has explicit statements about what childcare expenses may or may not be included in their grant coverage, as well as a general limit for health insurance costs, but no other information related to healthcare or accessibility. The NSF does offer special grants for disability accommodations, known by the acronym FASED (Facilitation Awards for Scientists and Engineers with Disabilities), which act as supplements to their other research grants. However, these are so poorly advertised and deeply buried in their funding materials that I did not know they existed until I dug through detailed searches for the purposes of this post – and I have applied for several NSF grants and attended multiple NSF-specific information and training sessions. These funds should not only be highlighted in every open funding call within NSF agencies, but also routinely made a part of grant writing courses or workshops at Universities and in anthropology departments specifically. 

References

Bennett, Andrew B. 2013. “People with Speech Differences as Ethnographers: Implications for Research.” Disability Studies Quarterly 33 (2).