A call to empathy

A call to empathy

 Office of the Dean September 25, 2019

James Kyung-Jin Lee shares vision for UCI Center for Medical Humanities

What are the “medical humanities”? Isn’t today’s medicine really just a matter of biology, chemistry, data and technology?  Scholars in the medical humanities offer a resounding “no.” They remind us that medicine is not defined solely by science and technology, but also by crucial dimensions of human meaning: our sense of well-being, our grappling with sickness and death, the values we attach to health and aging, the cultural concepts and languages with which we express our experiences, and so much more.

Medical humanists study literature and its representations of illness and wellness, from Frankenstein to memoirs. They ponder the ethical implications of new biomedical technology and the use of artificial intelligence in healthcare. They interpret the experience of illness among various cultures and in different historical moments. Ultimately, they seek to throw light on the dimensions of human meaning that are everywhere in human beings’ encounter with medicine.

The UCI Center for Medical Humanities is a unique collaboration between the School of Humanities, the Claire Trevor School of the Arts and the School of Medicine. It brings together medical, humanistic, and creative scholars to develop new ways of thinking about our human experience of bodies that change, grow, age, become sick, and, eventually, in one way or another, die. This fall, James Kyung-Jin Lee, professor of Asian American studies, takes leadership of the center.

Here, Lee discusses his vision for the center.

As the director of the UCI Center for Medical Humanities, what do you hope to accomplish?

I hope that the UCI Center for Medical Humanities will create a vibrant space for conversations and collaborations that advance our understanding of the human experience of illness. The center will continue to support new research, curricular development, and community engagement for faculty and students in medical humanities.

As an Asian American studies professor and a board member for both the Health Anthology of American Literature and the Journal of Transnational American Studies, how do you see your scholarship intersecting with medical humanities?

I’m a scholar who has explored how social forces impact cultural production. Most notably, I’ve looked at how race and racism determine how and why writers write particular kinds of fiction. I see parallel and intersecting dimensions to how modern society expects us to adhere to compartmentalized roles of health and illness. Medical sociologist Arthur Frank says that most of us are called upon to live out what he calls the “restitution narrative”: “Yesterday I was healthy. Today I am sick. But tomorrow I’ll get better.” The very notion of “sick days” speaks to this: you can “be” ill for a day or two, but you also must get better. Our economy depends on restitution. And yet, like those affected both by the forces of race and gender, those who experience disability or chronic illness live in different modes of time. I am trying to understand these different times of illness and how they can form the basis of other types of stories.

My book project builds on these dual dimensions of embodiment in narrative. I’m asking: how might the difference that being Asian American makes be related to the difference that being sick makes? I think this question is terribly important, given that modern-era Asian Americans have been taken to be a kind of racial exemplar—model minorities, if you will—who also enjoy exemplary bodies of health and productivity. Yet Asian Americans also experience sickness and death, sometimes those of others, and always their own. Yet the stories of these experiences have been, up until recently, pushed to the margins. My book wonders what happens when model minorities confront the horizons of bodily limitation and human finitude.

You spent 400 hours working as a chaplain intern on the oncology and medical surgery floor of a hospital in downtown Los Angeles in the summer of 2009 – why? How did this experience inform your outlook?

The most immediate reason that I did a unit of Clinical Pastoral Education (CPE) at the Hospital of the Good Samaritan was because I was in the process of becoming an Episcopal priest, which requires CPE. But the deeper affective and existential reason was that I wanted to know what in the language and critical reading I’d developed as a literary scholar could inform my encounter with those experiencing the crises of illness, some acute, more often than not chronic and/or terminal. Those 10 weeks taught me: very little. My school words mattered little. So, in that void and crucible, I learned to shut up and listen and then wonder at experiences of suffering that I could scarcely imagine. I learned what language people in their suffering brought forth for themselves. And in these encounters, I found that suffering produces modes of living and meaning that were indeed beyond the imagination of those who think a good life requires being able-bodied and in good health. I learned from them a different sort of hope.

Thirty years ago, Susan Sontag famously wrote, “ Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick . . . Sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” I would go further and say that none of us really holds citizenship in the land of the so-called healthy and able-bodied; at best, some of us hold visas with expiration dates. It is in that other place where we must all claim citizenship. The challenge is how to live (and die) well in this kingdom. Sooner or later, our bodies demand that we must tell new stories about them than we have in the past. Equipping people with the skills to think about this challenge, including its opportunities, are what the medical humanities do best. 

How are the humanities important to the medical industry and patient care?

Despite a decade or more of rhetoric of “patient-centered care,” I don’t believe the medical industry has sufficiently integrated the humanities. Of course, almost all physicians and other health care practitioners intend to take patients and their stories seriously, to engage in deep listening, to take in social context as important factors in differential diagnosis as lab or radiological work. Prominent, well-respected physicians and surgeons—people like Jerome Groopman, Ira Byock, Atul Gawande, Pauline Chen, and Rita Charon—have written important works encouraging such directions, many of them popular bestsellers. Yet medical algorithms of diagnosis and treatment and medicalized ways of thinking still often keep other ways of thinking and knowing on the other side of the clinical door, to the undoing of what one might call healing. To the extent that humanities and arts education offer another way of knowing, of thinking beyond the algorithm, such approaches push medicine to practice beyond the grain. I believe this is, however, medicine’s necessary future.

Tell us about the Sawyer Seminar, “Suffer Well,” and how that will parlay into the work of the center.

Last Fall, the center received a $225,000 grant from the Andrew W. Mellon Foundation to create a yearlong series that will offer lectures, symposia and presentations from invited speakers that explore human suffering in its various forms. Entitled “Suffer Well,” the series kicks off this October with its first events featuring Pauline Chen, a surgeon, author, and New York Times columnist. Dr. Chen is known for her 2007 book, Final Exam: A Surgeon's Reflections on Mortality, as well as her online column "Doctor and Patient.” She will be here on October 17th to give a talk and to provide a master class on writing.

Suffer Well will bring scholars, activists, and artists to campus into dialogue with UCI faculty, staff, students, and clinicians, as well as members of the public. My hope is we think together about the place of suffering in our social worlds, and what emerges intellectually when we lean into and confront directly the place of suffering in human experience.

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Related links:

Why Asian Americans never seem to get sick
A Physician-scholar first
Andrew W. Mellon Foundation grant to fund yearlong series exploring human suffering

Photo credit: Steve Zylius / UCI