Counting as Care: Disability in Ethnographic Praxis
From the Series: Disability as Rupture
In April and May 2021, a severe COVID-19 wave swept across India. Delhi, my fieldwork home, was an epicenter of this devastating surge. This surge continues to be written about as the worst that India has experienced to date (e.g., Jha et al. 2022; Kaur 2022), but it is impossible to accurately tally how many lives had been lost. Questions about bodies being made into numbers across “multiple scales of counting” (Nelson 2015, 2) dovetailed with my research on who comes to be officially counted as disabled in India, another area where the state’s efforts to count were being widely questioned. From my vantage as a disabled researcher interested in whom the state considers disabled, the question of counting the pandemic’s dead was inseparable from the question of who was most likely to die. Owing to sociopolitical conditions prior to and during the pandemic, disabled people have been rendered more vulnerable and less likely to receive adequate care than others (Shakespeare, Ndagire, and Seketi 2021).
My research participants and I had just started to meet in person after more than a year of “hanging out” online, excited for what the then-drop in COVID-19 numbers might mean for our work together. But as the number of positive cases started to rise rapidly, I noticed a larger rupture—not merely a disruption in fieldwork plans, which had already occurred at the start of the COVID-19 pandemic, but more so a constant, grief-filled question of whether and how to continue research. Already skeptical of how my research would translate into “real-world” results, a research participant who had been house-bound without access to necessary medical care during the March 2020 lockdown asked me only half-jokingly at the start of the wave: “And now that the numbers are rising, what do you think your research on undercounting will do? Will it convince the government to care about disabled people?”
To do ethnographic research on who counted during this time was also a reminder of what it means not to be counted, a time to hold worry for my participants and myself as part of ethnographic praxis. These feelings existed alongside a clear and consistent shared rage at having been abandoned by the state. In reflecting on how disabled rage and heartbreak were actively shaping the contours of my fieldwork, I drew upon a chronic illness methodological framework, which Melissa Kapadia (2020) defines as “[…] the application of ill lenses and ways of knowing to the practice of research.” Kapadia (2020) further notes that “researching while ill [is] not simply a practice rooted in necessity for ill researchers, but an important framework that shape[s] the work itself.” Building on Kapadia’s framing and my own experiences during fieldwork, I found that while the pandemic was and is a significant source of rupture, ethnographic fieldwork that accommodated for illness and disability also enabled technologies and practices of repair. Attending to my illnesses and those of my participants as sources of knowing shaped an elongated period of fieldwork that centered responsiveness to and care for the changing shape of the pandemic.
One example of repair: During the 2021 wave, together with other disabled friends, I contributed to coordinating mutual aid efforts in India that had sprung up in response to the widespread shortages of medical infrastructure, sorting through WhatsApp messages and responding to requests for medical supplies or funding for basic needs. The aid networks we worked to develop included but also extended well beyond the circle of my research participants, friends, and other acquaintances—at a time when the state actively worked to obscure information about shortages of medical care and infrastructural failure, and to deny deaths, mutual aid was a way to do the work of counting (and of affirming that everyone counted), over and over; it was a form of crip solidarity (Mingus 2010). Mutual aid work during/as a formative part of fieldwork was not a significant part of my initial research proposal, much less so the ability to respond to the devastation of a global pandemic; it was, however, one of the ways in which disabled ethnographic praxis allowed me to make room for repair.
To allow disability to be present at my fieldsite, to center it and have all else structured around it, was to center care and crip solidarity. There was no longer the question—as there may have been pre-pandemic—of negotiating in-person ethnographic interactions that allowed for both my participants and me to be safe. My research on how people’s experiences become numbers, and how those numbers are obfuscated, became a refusal (in as much as I could) to watch the people I knew become numbers, their deaths barely registered amidst the devastation. Working on mutual aid efforts made room for this refusal, and for the opportunity to connect people with financial and medical resources. I could not distinguish between what was fieldwork and what was not and, when responding to the multiple crises made manifest by the severity of the COVID-19 wave, I made room for the presence of disability everywhere and for crip ways of knowing, counting, and caring.
To care, as a relational act, is also to assert clearly how someone counts.
Durban, Erin L. 2021. “Anthropology and Ableism.” American Anthropologist 124, no. 1: 8–20.
Gunel, Gokce, Saiba Varma, and Chika Watanabe. 2020. “A Manifesto for Patchwork Ethnography.” Society for Cultural Anthropology, Member Voices. June 9.
Jha, Prabhat, Yashwant Deshmukh, Chinmay Tumbe, Wilson Suraweera, Aditi Bhowmick, Sankalp Sharma, Paul Novosad, Sze Hang Fu, Leslie Newcombe, Hellen Gelband, and Patrick Brown. 2022. “COVID Mortality in India: National Survey Data and Health Facility Deaths.” Science 375, no. 6581: 667–71.
Kapadia, Melissa. 2020. “Illness Methodology for and Beyond the COVID-19 Era.” Penn GSE Perspectives on Urban Education 18, no. 1.
Kaur, Bhanjot. 2022. “WHO Report Shows No Other Country Has Undercounted COVID Deaths As Much as India.” The Wire. May 6, 2022.
Mingus, Mia. 2010. “Wherever You Are Is Where I Want to Be: Crip Solidarity.” Leaving Evidence. May 3, 2010.
Nelson, Diane. 2015. Who Counts? The Mathematics of Death and Life After Genocide. Durham, N.C.: Duke University Press.
Shakespeare, Tom, Florence Ndagire, and Queen E Seketi. 2021. “Triple Jeopardy: Disabled People and the COVID-19 Pandemic.” The Lancet, 397, no. 10282: 1331–33.