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The periphery

ep. 402

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Host Mandy Quan unpacks the disease we refer to as “cancer,” moving beyond its biological etiology to examine instead how it is lived. Mandy and producer Bilal Rehman sit down with MIT Professor Dr. Dwaipayan Banerjee to talk about his recent ethnography, Enduring Cancer: Life, Death, and Diagnosis in Delhi to explore what cancer means to patients in Delhi, India, and beyond.       

transcript

MANDY QUAN: This is Metastasis. I’m your host, Mandy Quan.

 

In this episode, I unpack the disease we refer to as “cancer,” moving beyond its biological etiology to examine instead how it is lived. I sit down with MIT Professor Dr. Dwaipayan Banerjee to talk about his recent ethnography, Enduring Cancer, as we explore what cancer means to patients in Delhi, India, and beyond.       

 

But first a little bit about me:

 

MANDY QUAN: In college, I majored in anthropology while completing premed science courses. I loved thinking about medicine through anthropology. It offered generous grounds to examine the cultural construction and social experiences of those living with diseases like cancer. 

 

When I was in the lab, cancer seemed simple enough to define: abnormal cellular proliferation, local cell invasion, metastasis. I studied diagrams of the cell cycle in biology courses and memorized the arrows leading from the  G1 to S to G2 to M phases. I knew faulty checkpoints led to unhindered mitosis which then led to excess tissue growth.  

 

But in anthropology, cancer was not a universal object but instead always a particular experience arising within a specific set of historical and social relations. The biomedical models I had long internalized suddenly did not apply to everything. How is cancer lived? And how do we locate it beyond the body? And how can ethnography, anthropology’s main qualitative method, contribute new ways of understanding this disease? 

 

MANDY QUAN: To answer these questions, I sat down with Dr. Dwai Banerjee, a medical anthropologist, and scholar of science and technology studies.

 

In his book, “Enduring Cancer: Life, Death and Diagnoses in Delhi,” Banerjee returns to the city he grew up in to conduct two years of ethnographic fieldwork with organizations like the All India Institute of Medical Science, or AIIMS, India’s largest and best-regarded public hospital.  Here,  he examines cancer’s social life among Delhi’s urban poor, where the resource limits of an overextended healthcare system and long patient wait times meant that for most, treatment was not an option. In these conditions where biomedicine no longer occupies the central focus, new relations come to light. 

DWAI BANERJEE: Cancer, when it’s traditionally written about and thought about, is written in a metaphor of fight and that means it’s written as how patients get the diagnosis, how they experience radiotherapy, and how they experience chemotherapy. 

 

MANDY QUAN: This was definitely true in my experience learning about cancer through the militarized language of beating or losing a battle with the disease

 

DWAI BANERJEE: My interest was to see what happens when all that is not really at stake, when one is diagnosed at a very late stage. And what is really at stake is dealing with the fact of one’s mortality, dealing with pain, dealing with reconciliation with the very pervasive possibility of death. Those I think are understood to be periphery to how we think of cancer– my attempt is to sort of to bring that to the center because that is the experience for many patients, and this experience has been silenced by the discourse of survivorship in battle. 

 

MANDY QUAN: I’m fascinated with this metaphor of location– periphery versus center. Banerjee thinks about  cancer not just from where people have traditionally placed its center, but from the periphery of the disease.

 

At one level, looking at cancer in India and the Global South does subvert the trope of cancer as a disease of the civilized west. Banerjee’s ethnography thus writes against the cultural imaginations imprinted from the British Colonial Mission. 

 

At another level, Banerjee is making a turn away from cancer’s discourse of survivorship, and towards a finer attunement to the intricate social dynamics that come to the surface.  If we look for cancer in different places, we will see the shortcomings of how we understand cancer in India, the US, and beyond. 

 

MANDY QUAN: The tension between periphery and center surfaces in Banerjee’s chapter about cancer pain and the sensations of aching and compression often framed as peripheral symptoms of the disease itself. Cancer hurts, but rarely do physicians center their care around this experience. Banerjee thus tries to re-center the conversation around pain by interviewing anesthesiologists in the new Palliative Care Ward at the All India Institute of Medical Science (AIIMS). This made a huge difference. 

 

DWAI BANERJEE: As soon as you start thinking about pain, as soon as you think about death, you have to start thinking about so many other things at the same time. You have to start thinking about your relationships with family, whether you still trust God, whether you feel you brought this pain upon yourself, how you respond to that pain, what kind of moral assumptions are put upon you in the way you deal with that pain. These are bigger questions than the biomedical preoccupation with beating the disease.

 

MANDY QUAN: I am beginning to see where Banerjee is going. To bring pain from the periphery to the center of cancer reveals new moral dimensions. It teaches us about the personal stakes of care and raises questions about the lived experiences of a patient, because to treat pain requires attending to the social world –that is where pain takes shape. 

 

Banerjee’s ethnographic perspective is important here. Throughout my own anthropological study and training in ethnography, I have always been taught the importance of suspending my own assumptions about the way the world works. Ethnography instead is about inviting us to see the world through the situated perspective of others. 

 

Rather than applying predetermined definitions of cancer, Banerjee instead seeks to understand cancer through the standpoint and cultural conventions of those living with it. In many ways, the practice of ethnography mirrors what a humanistic practice of medical care can look like. To bring pain out of the periphery is also to bring the patient's voice back to the center of care. 

 

[MUSIC]

 

MANDY QUAN: At the time of Banerjee’s fieldwork, less than one-fourth of major cancer hospitals in the US reserved beds for palliative care. In a survey of over 200 countries, one-third didn’t have palliative care. And even in the most well-resourced hospitals in the global north today, palliative care is still seen as less prestigious than other specialties. 

 

This context goes to show how the emergence of a palliative care department at AIMS, and its staffing by anesthesiologists to care for patients is really revolutionary. 

 

At the same time, establishing pain as an object of intervention itself, and not just a symptom of cancer, is hard work. Dr. Nigam, founder and head of the palliative care unit, had battled for one decade with hospital bureaucracy before getting the unit installed. Met with infrastructural limits including lack of government funding and the newness of onco-anesthesia, clinical research and publications became a way to legitimize this work. 

 

Within this type of research, there have been efforts to implement pain assessment tools and questionnaires, including the Distress Inventory of Cancer Scale, which relates socioeconomic conditions to psychological distress. 

 

Yet, Banerjee reveals that the limits in staffing and resources prevent these surveys from actually being useful in medical practice. Rather than relying on these outsider expert tools and surveys, physicians often instead apply insider tacit knowledge accumulated through years of experience dealing with local customs and beliefs that open therapeutic conversations, relationships and possibilities. Many come to realize the complexity of pain that resists scientific formalization. 

 

But we must be very careful about these generalizations when we talk about how culture informs experiences of pain.

 

DWAI BANERJEE: So there's a long history of both fascination and a weird sort of appreciation for this imagined idea that India is a place that is dominated by yoga by spirituality and hence this ability to maybe deal with pain and suffering in a way that the West cannot. And there are books on books upon how the west should learn, and even within cancer literature, how the west should learn from India how to deal with pain and suffering because they’ve known for centuries and centuries how to do this. And this even ended up appearing in my fieldwork, going back to the history of the hospital I worked at. I began to see that just at the turn of colonialism and decades after that, they were really interested in studying Yogi's.

 

They would conduct experiments like put yogis in water tanks, and see if they could hold their breath, and whether they could suspend themselves to a point of, basically, half death. And whether they could measure that with ECGs. There was this interesting kind of medical fascination with asceticism which led to these studies, which continue to lead to studies even now amongst psychiatrists who work on cancer in India. But what can we do with these Hindu ideas of spirituality, pain and resilience? 

 

I see what they are doing with this, but I find it difficult to dig in because it is being operationalized by the right-wing in the government that has muted religion in ways that are obviously harmful. But even more than that,  it rehearses a colonial trope that helped the colonizer basically suggest that colonialism wasn’t the most difficult thing because it was a necessary intervention because Indians were too attuned to the other world, and hence not able to self govern. 

 

MANDY QUAN: What Banerjee is hinting at are the dangers of how we create knowledge around these practices. In my own ethnographic experience, I’ve thought a lot about the emergence of anthropology besides European colonialism. While attending to different worldviews can be enriching, what comes to matter is how ethnographers communicate their findings.  How do we push back against stereotypes mired in colonial history? And how do we create new spaces of nuance? 

 

DWAI BANERJEE: Why in the broader research literature was the focus so much on again, turning to this idea of asceticism and so on, rather than looking at these really interesting and complicated ways in which doctors, counselors, caregivers were always thinking through these ideas of pain, of understanding how to cope with and intervene into another's pain that one couldn't actually feel. They were doing all kinds of really experience-based ways of relating to pain rather than ignoring it. 

 

I think colonialism has left a deep imprint in some of these ways that are only becoming more and more visible when we think about yoga, and other ways in which Indian practices associated with, quote on quote Hinduism are operationalized, commercialized and mobilized in dealing with suffering. And I think we need to continue to pay attention to the realm of the spiritual, but we need to do it through an ethnographic attunement to what is actually going on, rather than assuming that there is something there to be mined.

 

MANDY QUAN: Banerjee suggests thickening this research, framing the spiritual as growing out of everyday life rather than emerging as above or apart from it. In the end, while the medical practice at AIIMs relies heavily on tacit knowledge, physician-researchers must still legitimize pain within the language of biomedicine in order to publish in academic journals and secure government funding. To make pain legible requires careful attention to the social, psychological, and spiritual dimensions of patient experience. 

 

While Banerjee’s ethnography takes place in Delhi, India, the parallel tensions between researcher/research object, physician/patient, eastern/western science, and expert/tacit knowledge claims are a call for more thoughtful portrayals of cancer everywhere. 

 

This is a different kind of universalizing, one that attends to difference. Pushing back on the singular cancer narrative, we may locate the disease in different places, reconfiguring the possibilities of how we define and make meaning of cancer, and most of all, finding new ways to listen. 

 

 

Written by Mandy Quan & Bilal Rehman

Assistant Editor Mandy Quan & Bilal Rehman

Directed by Lan Li