AMAA on Enduring Cancer: Life, Death and Diagnosis in Delhi

This article is part of the following series:

On concepts and consequences: 

Can we take the concepts of speech and silence, and care and disregard, which you outline throughout the book, outside the context of Delhi and cancer pain and used to elucidate the work itself, or does this defy the concepts’ specificity? Do you think the act of doing your research follows these patterns of speech and silence, and care and disregard? If so, is the ultimate goal preservation or recognition? And lastly, how do you see your work fitting into the larger narrative of care and disregard emulated by cancer care in Delhi? 

In answering this question, I am reminded of Susan Sontag’s memorable opening to ‘Illness as Metaphor’, in which she describes how cancer diagnoses break the trajectory of one’s life into two, transporting the diagnosed into an unchartered ‘kingdom of the sick’. What is often missed in pervasive appreciative recollections of Sontag’s phrase (‘the kingdom of the sick’) is that she coined it to mock it. Through her own experience, she understood the danger of drawing such clean lines between life before and after cancer. Situating cancer patients outside the vicissitudes of everyday life obscured how the disease’s etiologies and trajectories were deeply rooted in the contexts in which they emerged. So, she insisted that there should be no further metaphors around cancer because metaphors always abstracted the illness away from the ordinary and the political. I follow Sontag’s early recognition that a cancer diagnosis does not end one life and start another; rather, I argue that understanding the consequences of such a diagnosis requires an emphasis on continuity. It requires, for example, an attentiveness to the many relational fault-lines and failures that pre-existed the diagnosis. This crucial insight guided my ethnographic work. To be diagnosed with cancer in Delhi was better understood if placed within the already present vicissitudes of everyday life that pre-existed this diagnosis.  

This is not to say that it is only at this register of the ‘concrete’ (in Sontag’s words) that the disease’s trajectories make sense. Rather, I think of the book as tracking processes of metaphorization, as the disease was abstracted from its experience, despite Sontag’s hope that it would not be. This is why the second half of the book is concerned with aesthetic abstractions of cancer. It asks how and why films and memoirs about cancer in India tend to abstract away from the practices I describe (in the first part of the book). Instead, I found that these cancer narratives, in different generic modes, tended towards idealizations: of an essential womanhood, of national pride, and of what it meant to live a good life, and so on. 

Through this double-structure of ethnography coupled with cultural analysis, I traced the dangers of abstraction and all that it precludes from view. Of course, my ethnographic text offers another abstraction, equally caught within the push and pull of observation and representation. I am not suggesting that my text is any more ‘real’ than these representations. Rather, I am describing my method as exploring the dissonance between my representational practice and those already ubiquitous in the field. 

More concretely, in reading cancer memoirs written in and about India, I found them all too often preoccupied with the guilt and responsibility of individual patients. For example, had men driven by greed in a time of economic liberalization brought the disease upon themselves? And if it was their fault, what lessons could the disease teach them? And so, I found titles such as ‘Cancer My Love’ and ‘My Date with Cancer’ that urged patients to be grateful for their disease, as its experience taught them the error of their previous ways, affording them a new opportunity to survive and reform their lives. I need hardly say that the tendencies of this genre were a far cry from the dexterous practices of care I describe in the first half of the book. These practices were modes of attunement that did not abstract away from the pain, debility and the possibility of death that always accompanied the disease. The set of representations I studied, to the contrary, tended towards idealization and abstraction; it was as if cancer could only find language if it was turned into a pedagogic lesson about gender, nationalism, modernity and so on. 

Thinking about the cancer memoir then became an avenue to think about the stakes of my own writing and my anthropological desire to plot its specificity. Producing my own version of ‘context’, I sided with practices and representations that stayed with, rather than escaped, the debility brought on by the disease. For example, this drew me strongly to the work of palliative care, as it acknowledged in its own ways the slim possibilities of survival in conditions of already deep economic duress. The cancer memoir became a pivot point, pushing me to focus on the experience of pain and the practices of palliation that accompanied the disease. Early on, I wondered whether this was a book about cancer at all, since I was not writing about its more well-known associations with chemotherapy, surgery, oncological diagnosis and so on. Gradually however, I came to hone my attention to this ‘side-effect’ as an intervention into what ‘cancer’ meant. If one understood pain not as a side-effect but as a central part of the disease, it troubled the emphasis on cheery survivorship, forcing an acknowledgement of psychic and social impacts of the diagnosis that could not easily be transcended. I began to wonder about the contrast between the dominance of palliative care in Delhi, and the global discourse of survivorship specifically in the United States so expertly described by Lochlann Jain in her book ‘Malignant’. Much like the memoirs I read, Jain’s description of survivorship discourse criticizes how its emphasis on the individual spirit frames the politics of gender and health completely out of view. Writing my book mindful of other ethnographies like Jain’s allowed me to think more relationally about cancer, even though this thinking is for the most part implicit. My hope is that these connections strike readers as they read the book, since it is almost impossible to escape the ubiquity of the survivorship discourse that traps our understanding of cancer, not only in the United States but also in many other parts of the world. 

What do you make of how “responsibility” for one’s illness (I.e. recognizing one’s role in bringing the disease on) is simultaneously shaped by the coexisting themes of karmic retribution, gender discrimination, and the trope of the “cancer personality” elaborated by Unkule? 

I like this question because it allows me to deepen my previous response. Indian cancer memoirs did not simply reproduce survivorship discourse present elsewhere in the world. Rather, they carried with them their own form of cruel optimism. For example, women were blamed, and blamed themselves, for getting cancer as a result of entering the workforce, doubling their labor by adding the professional to the domestic. Many of these memoirs tied this shift in labor practices to India’s economic liberalization over the previous three decades. At the same time, they were not critical of liberalization on any broader terms; it was simply the responsibility of women to manage this national transition more carefully. In many such ways, these memoirs trafficked in the tropes of cancer as a consequence of an unhealthy lifestyle brought on by increasing modernization, a trope that runs across journalistic, medical and even social scientific writing about the disease. As I have articulated earlier here, I resisted such narratives of rupture, both at a national as well as at a personal level. This was a way of pushing against the presumption of a patient’s guilt, neatly shifting our attention away from the infrastructural failures in public health that are far more guilty of delayed diagnoses than individual irresponsibility. 

At the same time, the book is not preoccupied with this macro-narrative of ‘modernization as cancer’. Rather, I point to its insufficiencies by working at a different scale – the scale of the intimate. This scale opened up a different figuration of the disease – one not tied to survivorship discourses – but rather, focused on the management of pain. At this register, the main relational dynamic at play was the offers and refusals of recognition. Some cancer-care workers understood that to alleviate pain, they would have to understand it as a ‘total’ category – ‘social, psychological, spiritual and biological’ (these are emic terms). Thus, their work was as much concerned with reknitting frayed relational ties, as it was with working hard to procure morphine. These practices of alleviation then intervened into the guilt, shame, and feelings of moral lack that often suffused the experience of the disease. But they did so to counteract these affects, understanding them as an etiology of the pain of the patients and families under their care. 

What did you learn about empathy through your fieldwork? Do you think the empathy (or lack thereof) that you saw at the AIIMS can be related or translated to healthcare in the United States? 

Empathy was central to my fieldwork, but I would not describe it as something I found lacking, and to go a little bit further, nor did I find it to be an unqualified good. 

In the book, I take empathy to mean a particular way of transacting care. That is, I describe empathy as a mode of one-to-one attunement that creates conditions for exceptional care, while at the same time revealing the exceptionality of its own scope of transaction. That is, empathy produced exceptional care in both senses of its qualifier: it was exceptional because it allowed for startlingly effective pathways for relief. At the same time, effective cancer care was out of reach for most patients I met. Thus, empathy was exceptional in that it showed up its paucity in a structurally unequal landscape of accessible, public healthcare. Empathy thus appeared in conditions that asked medical professionals to mend the damage caused by structural failures. My aim in the book then is not to call for more empathy in Indian healthcare. Rather it is to bring into view, if only in relief, the structural preconditions of this empathy.  

I find this question of empathy resonating across medical anthropology in fascinating ways. As the field of ‘medical humanities’ grows in influence, what is the role of anthropology in this new humanistic turn? By the humanistic turn I mean a prevailing sense among medical professionals in the United States that medicine has strayed too far from its primary duty to provide humane care and that the humanities could teach physicians to do better. While I have nothing against a more humane medicine, I think a lot is staked in how we think of humaneness. In this book, the mode of empathy I describe is paradigmatically humane in the sense celebrated by the medical humanities; it brings listening, cultural understanding, and patience into the practice of medicine. At the same time, as a mode of one-to-one attunement, it risks depoliticization. What would it look like to think of humane care as a collective practice, mending structural as much as interpersonal failures? Such a form of medical humanities would not be predicated on teaching medical professionals to be more empathetic. Rather, it would be to remind them of the violence often embedded in well-meaning transactions of care. 

Thinking about empathy takes me also to the central concept of the book – endurance. In the same way I do not want to celebrate empathy, I do not want to celebrate the capacity of the urban poor to endure cancer. Rather, I focus on endurance because it seems to me to be acutely diagnostic of durability of structural violence present in my field. When cancer appeared in the lives of my interlocutors, it was often the latest in a series of episode of kinship and infrastructural failures. The practices of improvised endurance I describe in the book then shows its long durations (pre-existing the diagnosis), and how as a long-practice mode of survival, it folds cancer into everyday life.  

My hope then in centering endurance is to locate its preconditions: infrastructural and interpersonal failures that demand its practice, before and after a cancer diagnosis. Through its own durability, endurance points to long durations of ordinary accretive violence that, even in its slowness, demand as much from the urban poor as the sudden blow of a cancer diagnosis. 

On Methodology and Praxis: 

What was your personal journey that led you towards the research for this book? What sparked your interest and desire to relate the experiences of cancer and pain? You mentioned noticing signs for cancer care NGOs when returning to Delhi after a few years away led to you working with Cansupport, but what about these signs caught your attention in the first place? 

As I think is common in so many ethnographic journeys, my path to the field took several twists and turns. I began fieldwork intending to study how emergent legal judgements on euthanasia were bringing Indian law into intensive care units for the first time in the country’s legal history. But while in intensive care wards, I could not help but feel that I was only getting one side of the story. I was able to talk to families for only short periods of time, as they cycled in and out in rapid succession; both the nature of intensive care work and the high cost of ICU beds worked against long periods of hospitalization. And almost always, the specter of an imminent life or death decision loomed over this during this concentration of time. In trying to do ethnographic work here, I found myself caught within the limits of this condensed time-space, unable to think outside its intense pressure on the here and now.  

It was at this point that I met a team of cancer-care workers who happened to be at the hospital; they usually visited critically ill patients in their homes. This chance meeting changed the direction of my work. I had already begun to notice that even in the compressed time-space of the ICU, life-or-death decisions grew out of prior histories of institutional and intimate support and neglect. But without access to these prior histories (available narratively but not for slow observation), I felt myself coming up against an ethnographic wall. It is for this reason that I approached the cancer-care organization that did the slow, careful work of care-giving that preceded the most serious stage of a critical illness. 

Put differently, working at the ICU opened my eyes to the porous boundary between critical illness and everyday deficits in well-being. To understand these porous boundaries, it was crucial for me to study patients both within hospitals as well as in their homes. The dissonance between the experience and presentation of the illness between these two spaces helped me deepen my understanding of wider worlds within which cancer appeared. In this way, even though it did not make its way into the book, my ethnographic work in an ICU pushed me towards the book’s central idea – that any understanding of the stakes and trajectories of an episode of critical illness requires a questioning of its apparent exceptionality. It requires, for example, going beyond so many journalistic and scholarly descriptions of cancer that describe it as a catastrophic breakdown, rupturing a past life from the present and future. 

As an anthropologist working alongside medical providers, how do you position your work in relation to theirs? How do you perceive yourself in relation to their teams? And who do you write for? Do you understand your project as explaining the cultural world of healthcare practices back at the practitioners or explaining the experience of healthcare workers for the non-medical audience? Or is it not “either-or” but “both,” or “all of the above?” 

I think different fields elicit different kinds of collaborative engagements that are hard to predict. For example, I went into the field intending to maintain a clear critical distance between my work and the work of the medical practitioners I accompanied; I was certain that my focus was the lives of patients and not the work of cancer care workers. They would remain concerned with the biological (or so I thought) and I would focus on the extra-biological stakes of the illness. 

This façade however soon collapsed. Early enough in my fieldwork, I saw how the home-care workers I accompanied were drawing kinship diagrams much like my own, locating the illness in a web of social relations in order to go about their work of palliating pain. In this and many other ways, I found the care-providers I worked with were very attuned to the social world within which cancer appeared. They knew when (if ever) to directly use the word cancer, when to ‘collude’ in keeping the diagnosis buried within layers of indirect language, when to push towards a familial reconciliation and when to step back from intervening into already compromised social ties. This necessarily refigured my work, as I began to see my place as parallel to their process. 

A more direct example of my collaboration with medical providers was with the palliative care team at Delhi’s most well-known public hospital, writing and publishing a paper on what questions to ask about a patient’s social context during intake questionnaires. Of course, this collaboration was far from seamless. But rather than shy away from the friction, I became interested in reflecting upon what it revealed. And so, I came to write about my discomfort with the limitations of the patient questionnaire, and how when I expressed these doubts, one physician decided to demonstrate the constraints of an over-burdened public health by involving me in the actual intake process, showing me how it left no time for such formalized interventions. Instead, I came to see how their diagnostic work into the social worlds of their patients happened implicitly, demonstrating a form of practical knowledge not easily grasped in formal questionnaires and diagnostic instruments. 

At the same time, I should say that as illuminating as this friction was, my intent was not to produce it for the sake of what it revealed. Instead, more intentionally, I adopted a method of hesitancy rather than intervention. After all, I was entering relational worlds carefully crafted together by providers, patients and families. For example, in many instances I discovered dexterous arrangements of speech around the word cancer. Simply blurting out the word could undo months of a negotiated understanding about how to bring the disease into speech. In a sense then, one key concern of the book – the tricky relationship between care, speech and crisis – only became clear because I took a step back, for the most part staying silent, watching these relational webs unfold without putting further pressure upon them.  

Was there ever a time when you felt as if you crossed a boundary either with patients or the medical staff? If so, how did you acknowledge the fact and how did you fix it to maintain the flow of the research process?  

This is such an important question to answer, especially given the deeply vulnerable cohorts of patients I was working with. It returns me to the theme that runs through the book – the difficulties in drawing a line between critical and ordinary illness in situations of infrastructural lack. The undulations of crisis were often so subtle that I did not have the capacity or tools to know when lines had been crossed. This was because boundary-crossings did not always result in eruptions of anger but were often expressed in gestures and actions that sometimes flew beneath the threshold of my ethnographic sensitivity. 

Put differently, this was the place for me where method and concepts became indistinguishable. I describe my method as one of hesitancy, but hesitance could as easily describe the form of life I saw unfold, where relationships around critical illness, already under intense pressure, could unravel and break under the slightest further duress. 

Dwaipayan Banerjee is an Associate Professor of Science, Technology, and Society (STS) at MIT. He earned his doctorate in cultural anthropology at NYU and has been a Mellon Postdoctoral Fellow at Dartmouth College. He also holds an M. Phil and an MA in sociology from the Delhi School of Economics. His research is guided by a central theme: how do various kinds of social inequity shape medical, scientific and technological practices? In turn, how do scientific and medical practice ease or sharpen such inequities? In doing so, Banerjee’s ongoing research pushes science and technology studies into the global south. He develops postcolonial and subaltern orientations in the scholarship on science, medicine and technology. 

Ask-Me-Almost-Anything (AMAA): Centering Student Engagement with Ethnographic Monographs” is a series edited by Christine Sargent.