by Linda Kobert
Born in the US of parents from India who were academics and social activists, Sayantani DasGupta went to medical school because she wanted a career in which she could contribute to social change. But she was a writer long before 2001 when she connected with Rita Charon, founder of Columbia’s Narrative Medicine program. By that time, she’d already published a memoir of her experiences in medical school and a collection of Bengali folk tales.
Until that time, however, writing had always been something separate from her career, something personal. Working with Charon at the very beginning of what has become a national movement toward a greater focus on narrative in medicine opened possibilities for DasGupta to develop a career that is informed by her medical training and includes writing, telling stories, and teaching…work she calls health humanities.
DasGupta no longer practices clinical medicine, but she is a faculty member not only in Columbia’s Master’s Program in Narrative Medicine, but also at the university’s Center for the Study of Ethnicity and Race and the Institute for Comparative Literature and Society. She is also an associate editor at the journal Literature and Medicine, and lectures widely on issues of narrative humility in medical education and practice, racial justice and health, diaspora studies, and science fiction/health futurities.
HD: How did you get started working with the Narrative Medicine program at Columbia?
I had a very active childhood and was brought up in a very active household where my mom, who is a professor of psychology, was an antiviolence activist and formed the first antiviolence organization for South Asian immigrants. So I was involved in the immigrant community, anti-racist, anti-sexist, anti-violence activism from a very young age.
Neither of my parents are physicians, but they’re academics. So I went to undergrad at Brown University in the late ‘80s, where I was very involved in campus politics and student politics and anti-racist politics. And really, in a naïve way, not knowing much about the mechanics of medical training, I thought, I need a concrete tool if I want to contribute to social change. I want to have something to offer people to make the world a better place. So I went to medical school not really knowing much about traditional medical culture and training.
I went to Johns Hopkins University School of Medicine. It was a bit of a culture shock. There are some extraordinarily passionate and dedicated physicians there, but it’s also a very old institution with a very particular culture of medical training, and that was a bit of a surprise.
I did a public health year at Johns Hopkins [School of Hygiene and Public Health, now known as the Bloomberg School of Public Health], and that was simply mind blowing. To see the connections between individual care and community-based care, and to understand that one cannot exist without the other. You cannot take care of people individually without understanding systemic unhealth. And that systemic unhealth goes from the availability of water to the history of colonialism. It’s both very particular and very broad. So to have that training was invaluable.
But I found my footing in terms of finding politically likeminded folks at the social pediatrics program at Montefiore Medical Center, where I did my residency. That’s a longstanding program that’s very community based in the South Bronx, where trainees get lots of primary care hands-on time, where the connections between things like the vibrancy of a community center and the health of our adolescent patients is very clear. So that was very exciting for me.
I trained as a pediatrician. I was thinking of going on to adolescent medicine and reproductive health. But I ended up doing an urban community health fellowship at Columbia, because I’d heard of this thing called narrative medicine. I wasn’t exactly sure what it was, but I was a writer already, and I always thought it was a separate, personal endeavor. I didn’t really have a sense of how that was going to connect with my medical career.
I purposely took this fellowship at Columbia so that I could go knock on my now-colleague Rita Charon’s door and say, “Hey, I hear you have this program called Narrative Medicine. What is it? Can I be involved?”
That was around 2001. Rita had just gotten a grant. I was kind of in the right place at the right time, because I was a fellow in the pediatrics department, but I came in on a grant to start doing narrative medicine work. We started out just teaching residents and people involved at the medical center. Eventually we started the master’s program.
And despite the fact that at Columbia we call it narrative medicine, I want to be very, very conscious of the fact that the work I do is health humanities work. I want to be very conscious of not only privileging doctors and medical training. Because just as important in this work are nurses and therapists and social workers and, quite frankly, home health care workers, including family care givers. So despite the fact that I’m a physician, I want to be conscious to open up the discussion to everyone in health care.
HD: So let me ask you to talk about this relationship between stories and medical or health care.
SD: The intuitive sense is that stories are good medicine. We get it that part of healing is being able to tell our story and being listened to, and that’s the beginning of this whole health endeavor.
So what I’m curious about, vis–à–vis stories and health, are questions like, in health care or the world, whose stories count? Whose stories are discounted? How do we address those inequities? Who gets looked at, and who’s doing the looking? How does that reflect global power politics or community power politics?
But I’m really asking questions like, who gets to imagine themselves healthy? Who gets to imagine themselves in the future? Why is Black Lives Matter a public health emergency? Why is imagining people of color just living—imagining a mother being confident her child will not be killed on the street—why is that a public health issue? How is that a narrative health issue, especially when you think about whose story counts, whose lives count, whose bodies count?
HD: Do you have a vision for how the world might be changed because we focus more on the stories?
SD: It’s very easy to be broadly theoretical, but very concretely, if we agree—and I don’t think we all agree yet—but if we agree that listening and telling are a critical part of the healing relationship and healing period, then you can’t get better if somebody isn’t really listening to you and understanding what you’re saying. In a practical sense, the doctor is going to miss diagnoses. In a practical sense, you’re going to spend a lot of money doing tests that you really didn’t need to do.
But what’s the practical outcome of that? Well, if we all agree, in sort of mercenary terms, that a narrative focus is going to make health care more efficient, and you’re going to get people out of the hospital sooner, and we’re not going to do unnecessary tests, and patients are going to follow through on their care, and we’re going to pick up diagnoses, then maybe a practical outcome will be, well gee, maybe this ten- or fifteen-minute rotating treadmill of patient care is going to have to be addressed.
So that’s a very practical question.
In a broader sense we think about justice—Black Lives Matter, as an example—we think about justice as a health care issue. We think about the availability of what my colleagues Jonathan Metzl and Helena Hansen call structural competency. They talk about downstream health effects of upstream social decisions. So you can’t talk about obesity or heart health or diabetes without looking upstream at the availability of grocery stores and urban food deserts and the fast food industry.
So you have practical, individual results, like the amount of time you spend on a visit. And we also think about these broader social issues, like food deserts, which is a really important part of community health and therefore individual health. So we’re going to have to think about food deserts and urban planning in critical ways that acknowledge the fact that it’s usually blue collar communities and impoverished communities where food deserts are located, and what are zoning laws like.
HD: In the Columbia program, the focus is on narrative and the stories. A lot of the focus, I understand is on writing, creating stories. How is that piece—the writing—important in the health care setting, in helping patients get better?
SD: Different colleagues do different work on this. For instance, my colleague Rita Charon had this thing called the parallel chart where she was exchanging a notebook with folks she cared for and writing down reflections and reactions. It was an informal thing that wasn’t charted, but it was something that they shared. It was a way for them to improve communications.
We’ve all had the experience of sitting in the doctor’s office and you have two hundred questions and they all fly out of your head. So to be able to reflect in a calm way and write down those reflections so you can go back to them and say, “Oh yes, that’s what I was thinking. That’s what I was feeling. This is what my impression was.” So practical things like that.
Also, there are writing programs all over the country now, which is very exciting. Hospitals now have in-house writers and artists. Sloan Kettering has an exciting program called Visible Ink where writers come and mentor folks who are getting cancer care and who want to write. This is completely a separate activity, seemingly, from their health care, but I imagine it contributes greatly to their being able to think through things and name things.
And with caregivers similarly, to be able to process all of the very complicated emotions and tensions and anxieties and frustrations and joys of being a caregiver, and to be able to process them and name them. If you don’t name something—if you can’t articulate it in some way—it acts on you in unseen ways. If you can name things, you can put it in its place, to be able to use it for healthy means.
So I think the writing component for caregivers is important, the writing component for patients and families is important. I think that’s happening in multiple ways in hospitals.
For me personally, because I come to it with a teaching lens and a critical medical studies lens, I do a lot of writing in the classroom with my students. And the way I talk about it is, it’s a way for all of us to make sure all of our voices get heard. If we’re asking questions like, whose stories count and whose stories are discounted in health care, I want to make sure that in our classroom we’re enacting a parallel process.
I talk about the classroom as a parallel. So if we are learning in ways that are collaborative, engaged, power sharing—that is, I’m not coming into the classroom acting like I’m the teacher and you’re the student, so you better be quiet, I’m going to deposit knowledge into your brain, what’s called the “banking model” of education… So we move away from that banking model, and we, as bell hook says, make the classroom a place of possibility and excitement.
I use writing a lot in my classroom, and my hope is that all the things I model in my classroom become blueprints: power sharing, egalitarian communication, nonhierarchical ways of functioning. Those become models that students can then use in their clinics and communities as caregivers.
HD: I think my favorite thing you’ve written is “Intern.” This is so intense, and it’s written in third person point of view. I was amazed by what you were able to convey because this very personal essay comes to us in third person. It’s not a straight telling about this happens then this happens. How does that kind of creative representation of your personal experience offer a different way for readers to experience this story?
SD: I think this expectation—the linear, singular narrative—is a stumbling block in medicine. We want the right story, the only story. We’re upset when people change their story or their story is ambiguous or confusing. We say let’s just go on lab results, because we don’t know what they’re saying.
Part of that is because we’re training doctors and nurses to expect certain very linear, easy, direct, this-happened-then-this-happened ways of hearing stories. But that’s not usually the way we tell our stories. It’s not the way we live our lives, and it’s not the way doctors and nurses then repeat the story, and I think that leads to a lot of frustration.
What creative work in general—particularly works that play with point of view and temporality and genre and voice—what it does is open us up to realizing that not everything is going to be told in linear first person. It works our muscles to be better listeners. Becoming a better writer and reader helps us to be better tellers and better listeners. Because we are equipping people with the ability to recognize that, oh this person has changed to third person. Was that an act of distancing the self from the story? Was it an act of pulling the listener into what’s happening?
Those sorts of narrative dimensions are happening in the world all the time. We’re just not equipping our students with the tools to process them.
So for me, that sort of creative writing… I always write because I don’t understand something, and I need to work it through for myself first. Forget about the reader; that comes second. I need to figure out what I’m feeling first. So to be able to work it through in a nonlinear way or a creative way, it’s just another really important muscle, an important emotional tenor to have in our work, whatever our work is. To equip ourselves with methods of creative expression and creative reception is absolutely critical.
HD: Isn’t there something in the reader, too? In their reception that changes them maybe, changes the way they understand something about themselves?
Oh, sure. That’s what the best writing is. You’re writing in some way that you, the author, needs to work through, but in doing so you’re opening up the reader to enter the text and feel like, oh this is actually about this thing I’m going through. Sometimes you read something and you don’t articulate that to yourself, but it’s equipping you with the space as well as the imaginative tools to work through and then better deal with the next thing that comes along.
For me the creative work has always been intensely personal, but then in that it’s hopefully opening up for other people to enter.
HD: Is there anything else you’d like to say?
SD: Lately I’m really interested in the ways that narrative health and justice can work to help us pay attention to power and upset traditional hierarchies of power. I think it’s really important that, if we are seeking new ways of feeling and new ways of imagining and new ways of knowing and new ways of speaking and new ways of receiving, that in that work we don’t recreate the same old oppressive power politics. That at the same time we think about justice, and we think about freedom. That we think about love, and we think about community-making.
This is really emotional for me, because I can’t decouple. I can’t say, let’s do narrative work, but let’s maintain the situation where the patient is way down here, and the nurse is here, and the doctor is way up here. I can’t say that. We have to change that, all at the same time. Always I think it’s about justice in the end.
What I find disheartening is when people think of heath humanities as another widget, like it’s another tool in your tool belt, or it’s like a twelve-step process. They want me to condense. I’m talking about ambiguity and nuance and creativity, and somebody wants a pocket card.
And that’s like the institution pushing back and saying, you know what, we’re not going to change. We’re not going to change our ten-minute office visits, because that’s making us money, that’s feeding our profit margin. That’s a pushback that I’m happy to engage with. We have to push back. We can’t allow this to become just another widget.