The Lapsed Ethnographer: Toward Foggy Fieldwork

From the Series: Disability as Rupture

Close-up photograph of a piece of knitting. The photograph focuses on unraveling red loops of yarn poking out of black fabric. Different patterns of red, green, and black knitting appear in the foreground and background of the photograph.
Detail from an untitled ethnographic knitting project, 2021. Image and knitting by Rebecca-Eli Long.

“I was so foggy last week…sorry, I forgot we were supposed to meet.”
“I had brain fog so bad I kept forgetting to pay the rent. So I was evicted.”
“It’s way more than just being tired.”


Brain fog is a type of cognitive impairment that refers to the disruptions in thinking, recall, and information processing found across various chronic illnesses. Brain fog is a rupture in normative ways of thinking, and as such, interferes with the daily life of those who live within it. It features prominently in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the disease I studied through five years of fieldwork with an ME/CFS patient activist group.

Brain fog creates ruptures not only in relations among people with ME/CFS, but also in conventional notions of fieldwork. When I say I conducted ethnographic research for five years it sounds impressively long. But it was never what I had romantically envisioned fieldwork to be like. As Kasnitz and Shuttleworth (2001) write, anthropology has “such a lightly veiled connection to images of adventure.” In contrast, much of my fieldwork took place, on and off again, from my computer, in my small Brooklyn bedroom. In the pre-COVID era, my work was ineligible for funding, forcing me to conduct it on a part-time basis and pointing to a tacit adjudication of what “counts” as ethnography.

Fieldwork for me was always “patchy.” It took place in fits and starts as I went months without seeing or talking with my interlocutors, who were frequently too crashed to come to events with consistency or to show up for interviews, as the above examples suggest. Post-exertional malaise is the cardinal symptom of ME/CFS, and it can manifest after physical energy expenditure as well as cognitive and emotional exertion. Interviews themselves raised ethical considerations. “I haven’t eaten in three days,” one interlocutor told me after explaining that fasting helped him, “that’s the only reason I can talk to you right now.” I tried to schedule follow-up interviews—with a desire to gain the depth of embeddedness valued in ethnography—only to never be able to reach someone again.

I never ended up satisfying my own fantasies of fieldwork. My research project was cut off prematurely, ruptured by COVID-19. When the time came to write my dissertation, I developed a new disability that prevents the adequate return of blood to my brain, which can create brain fog similar to that found in ME/CFS. As I struggled to write, I looked back wistfully at 2016 fieldnotes where I refer to myself as an “able-bodied ally.” Now as I write up my work, I often fail to recall names, dates, and important references—this has gotten me into trouble both in a field where quick recall is associated with intellectual acumen, and from a feminist anthropology standpoint that understands citation practices as political.

Cognitive disability is one of the last forms of impairment anyone can envision the academy incorporating. In a AAA panel that was later published in Somatosphere, Matthew Wolf-Meyer and Emily Yates-Doerr asked contributors to rework biomedicine’s “cognitive bias,” inviting us to challenge biomedical models of cognition and to think differently about thinking. Essays looked at dementia, madness, and intellectual disability, and challenged narrow conceptions of self-expression and memory. But biomedicine is not the only field that privileges some forms of cognition above others. Despite recent celebrations of neurodiversity, normative forms of cognition have been so tightly linked to personhood and the human that the anthropology of disability, too, contends with a central irony (Wolf-Meyer 2020). After all, what you, the reader, are taking in here is composed of words—words written by people with the ability to express knowledge in a way that you will understand. And for anthropologists, recalling what we heard and what happened in the field (when we cannot always write it down at the time) is central to our method.

As a lapsed Catholic, I’m skeptical about the genre of the confessional. But there’s a reason so many disabled scholars in this series write about first-hand experiences of doing fieldwork. Disability ruptures traditional ethnography, and these disruptions can open up new methods, for everyone. Erin Durban (2021, 18) argues that “ableism is inherent” to anthropology’s bread-and-butter method. For me, too, ethnography can be difficult: the research full of lapses in temporality and the writing full of lapses in memory. But perhaps a lapsed ethnographer can also be a “practicing” one. Practicing being lapsed means pushing anthropology not only to describe disability, but to let the ruptures caused by impairment come to bear on its methods. The goal, then, is not strictly to make anthropology “less ableist.” Jonathan Sterne (2022, 198) asks us to stay with impairment, inviting us to be “unreliable narrators.” And as John Lee Clark writes, conventional notions of access are always about “including” disabled people into ablebodied worlds, rather than the other way around.

The accommodation model Clark critiques might attempt to “include” disabled people in our discipline by providing equal access to fieldwork. For cognitive impairment, it might involve creating infrastructural changes to fieldsites, giving more time to complete fieldwork, or deeming it ethically acceptable to record things that usually would not be recorded. But here I want to invite us to push beyond inclusion and embrace “foggy fieldwork”: a method that prizes lapses and ruptures as part and parcel of the object under investigation. The cancelled meetings, months without contact, things I struggled to remember—foggy fieldwork doesn’t worry about all that. Foggy fieldwork means relishing the fact that the field is not a fixed, coherent place. Foggy methods mean approaching the field as spatially dispersed, temporally disjointed, and profoundly polymorphous (Gusterson 1997). This methodology arose for practical reasons for me, but it has implications beyond a study of brain fog and is not just an unfortunate fact of my disability. COVID-19 is changing the game: it will continue to create practical and material disruptions in both the fabric of everyday life and our ability to conduct conventional research. We have to be willing to sit in fogginess to understand the disconnects of our uncertain world.

References

Durban, Erin L. 2022. “Anthropology and Ableism.American Anthropologist 124, no. 1: 8–20.

Gusterson, Hugh. 1997. “Studying Up Revisited.PoLAR: Political and Legal Anthropology Review 20, no. 1: 114–19.

Kasnitz, Devva, and Russell Shuttleworth. 2001. “Introduction: Anthropology in Disability Studies.Disability Studies Quarterly 21, no. 3.

Sterne, Jonathan. 2021. Diminished Faculties: A Political Phenomenology of Impairment. Durham, N.C.: Duke University Press.

Wolf-Meyer, Matthew J. 2020. Unraveling: Remaking Personhood in a Neurodiverse Age. Minneapolis: University of Minnesota Press.