Dirt and Care: Queer Care in an Anal Dysplasia Clinic

Abstract

This dissertation draws on 12 months of ethnographic fieldwork in an anal cancer prevention clinic to develop a queer theory of care with two aims: first, to draw queer/trans bodies and care practices out of the margins and into the center of the anthropology of care; and second, to challenge and disrupt the common heteronormative assumptions embedded in the anthropological study of care. I put Mary Douglas’ theorizations of dirt, risk, and taboo in dialog with queer theory and more recent anthropological work on care to help make sense of how care can be a site of resistance to harmful normativities that marginalize and taboo. The dissertation consists of five chapters, bookended by an introduction and a summary conclusion. In Chapter 1, I lay out the foundations for an anthropological queer theory of care. After reviewing and critiquing the anthropology of care literature, I bring insights from queer theory to bear on the question of the meaning of care. The chapter details the queer theory of care I develop and deploy in the rest of the dissertation. The queer theory of care includes four elements: (a) it resists and disputes heteronormative conceptualizations of care; (b) it avoids heteronormative assumptions about what constitutes a “normal” life course; (c) it highlights the positive affirmation feedback loops created in and through care practices; and (d) it attends to the ways marginalized people create unique logics of care and counter-heteronormative thought styles, discourses, and practices. In Chapter 2, I elaborate on the anal taboo by drawing on the work of Mary Douglas on dirt, taboo, and risk. I put Douglas in conversation with work from queer and trans studies to argue that the anal taboo and its presence in medicine stems from heteronormative thought styles concerning the body, its parts, and their uses. The anus is a natural symbol involved in the (re)production of various gendered, sexualized, and medicalized institutions and forms of exclusion. I explore ethnographically how the care practices at the anal cancer prevention clinic work to queer understandings of the anus, aesthetics, and pleasure. I further argue that this constitutes a form of queer care in that it helps create a clinical environment that generates queer/trans affirmation feedback loops. Chapter 3 constructs a first-person narrative of my experience of undergoing an anal cancer prevention procedure during my fieldwork. Inspired in part by autoethnography, extended case study, thick description, and sensorial anthropology, I explain my choice to use my body as a sensorial data collection tool. I share the story of my experience undergoing the procedure, beginning with my morning arrival at the clinic and ending with my recovery experience later in the evening. I use this autoethnographic data to analyze the presence and resistance of the anal taboo and practices of queer care in the clinic as I experienced them from the perspective of a “patient,” though one informed by several months of participant observation in the clinic. In Chapter 4, I explore the role of humor and joking at the clinic. This chapter draws together work from the anthropology of humor, queer humor and camp, and the literature on humor in medical settings to demonstrate how the kinds and styles of humor and joking at the clinic were important aspects of the staff’s queer care practices. I describe and analyze the effects humor had in the clinic, including its palliative effects for many patients, how it mediated patient-provider interactions, how it managed dirt and bodily excess, and the ways it was sometimes itself dirty, or “out of place.” I end the chapter with a call for more anthropological attention to humor and joking as forms of care. Chapter 5 examines the role of the ANCHOR study, an anal cancer prevention clinical trial, in shaping everyday life at the clinic. I argue that the orientation toward/around ANCHOR data constitutes a form of queer care that links individual bodies in the clinic with biopolitical futures. As a participating site in ANCHOR, the clinic is a place where the interests of myriad actors—researchers, doctors, workers, and patients from marginalized communities—converge and diverge in the process of enacting the biopolitical aims of the clinical trial. Situated within anthropological and social scientific studies of evidence-based medicine, clinical trials, and data, I examine the clinic staff’s practices of data collection and processing as forms of care. One of the implicit goals of ANCHOR is to produce knowledge about HPV and its attendant diseases to have biopolitical affects, namely to make changes to funding, research, and health care delivery landscapes. For the clinicians and ANCHOR researchers, caring about/for the ANCHOR study’s data inspires “good” data collection practices that adhere to the standards of evidence-based medicine. These standards are recognized as necessary for the production of medically legible knowledge and evidence, which in turn leads to better understandings of a disease that disproportionately impacts marginalized people. ANCHOR’s data is made into evidence that intends to push biomedical researchers and funders to care more about queer/trans bodies and lives and thus improve the health of the population. I conclude the dissertation with a summary that draws together its main threads and arguments. I explore the potential disciplinary and broader impacts of attention to queer care and queering care scholarship, and discuss some of my lingering questions and thoughts on potential future research.