Race and Medicine: Life Beyond a Cure
How has the pandemic affected the Asian American community? How can the medical humanities shape our understanding of illness and our life’s meaning? In this episode of “COVID-19: The Humanities Respond,” Tyrus Miller, dean of the School of Humanities at the University of California, Irvine, discusses these questions with Jim Lee, associate professor of Asian American studies and director of the UCI Center for Medical Humanities.
Tyrus Miller (0:05–0:32): Hi everyone. Thanks for tuning in to “COVID-19: The Humanities Respond.” I’m Tyrus Miller, dean of the UCI School of Humanities, and I’m pleased to welcome today Jim Lee, associate professor of Asian American studies and director of the UCI Center for Medical Humanities, which is a collaboration of the School of Humanities, the School of Arts, and the medical school at UCI. So thanks for joining us, Jim.
James Kyung-Jin Lee (0:32–0:34): Thank you for having me, Tyrus.
Miller (0:34–2:28): I want to start with a kind of contextual and historical picture. The COVID-19 pandemic, of course, is a biological and an epidemiological event, but it’s also revealed to us very clearly, I think, that an epidemic can’t be just reduced to a pathogen and its possible medical solutions or mitigations. It’s a very multi-layered event. There’s a whole number of social and political and cultural and historical dimensions that we also see.
For instance, we’re, I think, increasingly aware of the unequal impact of the infection on different communities. We’re seeing a political polarization around all kinds of issues like wearing a mask or the reopening of businesses and also, the stark revelation of historically-renewed prejudices and fears that are associated with illness and contagion that have been reactivated by this current situation.
Specifically, we’ve seen in this current pandemic a really politically charged characterization of the virus as foreign and specifically, especially its coming from China, as Chinese, and we’ve also seen a surge in racism towards Asian Americans, including regular incidents of harassment and physical violence. Now, of course racism against Asian Americans didn’t start with the pandemic and it wasn’t caused by the pandemic, but we’ve really seen an intensification of that. This racism, in fact, has a long history and an enduring history in the United States, and I wondered if you could provide us with a bit of the historical context for understanding some of the current manifestations?
Lee (2:28–5:06): Sure, so shortly after the completion of the Transcontinental Railroad in 1869, Chinese immigrants, who had been brought to the United States as indispensable labor to work, to complete the Transcontinental Railroad needed to find other forms of work. At the same time, white working-class men, who were also in California, saw these Chinese immigrants as competition and started to mobilize to find ways to exclude Chinese from the United States, and at the same time, public health officials start to view Chinese bodies as harboring more virulent forms of disease.
For example, Chinese women, who had been promised jobs in California, who end up working as sex workers, were seen as vectors of venereal disease and other sexually transmitted diseases, and this resulted in their exclusion in 1875 through the Page Act. Chinese immigrants were also seen as unhygienic, and part of that had to do with the fact that they were cordoned in segregated crowded housing. They were associated with eating rats, which aligned them with the Bubonic plague, and they were just generally seen as unhealthy and dirty.
This discourse around the Chinese body was part of the major medicalized discourse that ultimately resulted in the Chinese Exclusion Act of 1882, and I should say as an aside that one of the major proponents who viewed the Chinese in this way, was Hugh Toland, who was a public health official in San Francisco, who formed the medical school that ultimately became UC San Francisco. So the UCs are implicated in this story as well. This became the generalized view of Asian bodies by Americans for half a century, and it was only in the latter half of the 20th century when Asian Americans began to be seen as model minorities did this discourse of the unhealthy, diseased Asian body kind of slip away, but as we see today, that idea of the diseased Chinese or Asian body is just an outbreak away.
It is not a surprise to me at all that this morning, Donald Trump referred to the coronavirus as a China plague. By doing so, he is signaling back to this long history.
Miller (5:07–5:46): So you considered the ways in which certain negative representations of Asian Americans in U.S. culture have been tied to fears and feelings about illness and you’ve used the terminology of the racialization of illness. That may not be a familiar term or familiar lens for some of our viewers, and I wondered if you could tell us a little bit about this idea of racialization as a way of analyzing this cultural phenomenon? And what does it mean for an illness to be connected with an ethnic or a racial group in the culture’s imagination?
Lee (5:47–7:57): Sure. Let me take the Asian American example to begin. As I mentioned just a moment ago, in the mid-century, around 1960, Asian Americans began to be viewed as model minorities. That is to say upwardly mobile, economically productive citizens that in some ways champion the American dream, and I would suggest that there’s a health corollary to this. That the model minority, in order to be economically productive, has to be a healthy, able-bodied body, right?
Around 1960, Asian Americans began to be viewed as model minorities. That is to say upwardly mobile, economically productive citizens that in some ways champion the American dream, and I would suggest that there’s a health corollary to this. That the model minority, in order to be economically productive, has to be a healthy, able-bodied body, right?
So in the case of Asian Americans, we see that the people who get to talk about illness, right, are these model minority, able-bodied persons, namely doctors. So think about the major medical authorities in the United States today. Many of them are Asian Americans. Think Atul Gawande, Sandeep Gupta, Vivek Murphy. Conversely, Asian Americans, as a result of their being seen as primarily able-bodied, don’t really get to talk about their experiences of illness in the public sphere. So you have this kind of asymmetry in language around health and illness, right?
On the other hand, we see in the case of the Black community, there’s been a lot of talk about how Black people are dying at higher rates than their white counterparts and I want to give a shout-out to Sabrina Strings, who’s written very powerfully in The New York Times about this idea that the reason why Black people are dying at higher rates is because of pre-existing conditions like obesity and the effects of obesity, and she argues that that is in some ways a false, in many ways, a false correlation.
In fact, if you wanted to trace these higher rates of Black death, you need to trace them to generations, even centuries, of anti-Black racist policies that have denied access to healthcare for generations of Black people and it is these policies that are the central cause of Black people dying prematurely to this disease.
Miller (7:58–8:07): And I’ll just put a footnote in here. You were referring to Sabrina Strings, who’s a professor here at UCI in the social sciences.
Lee (8:08–8:09): Yes.
Miller (8:10–9:22): You’ve also, along with your analysis of the racialization of illness, you’ve also invited us to think about illness in a different way, as something that is constant presence. Not something to shunt off to the shadows, but something in some ways to embrace and understand as a part of life, as a part of our existence, and as something that we have to offer a more positive way of thinking about the way in which we relate to illness, and specifically one of the aspects of western medicine is to give us a kind of false sense of security, like illness could be pushed definitively away from us. Might we be getting a kind of false sense of security and not really confronting our real vulnerability to illness and therefore also the meaningfulness of the illness as a part of our individual and collective life?
Lee (9:23–11:42): Yeah, I think the miracle of the 20th century is that it allowed health practitioners to enable people to live into what the sociologist Arthur Frank calls the “restitution narrative,” and the colloquial version of the restitution narrative goes like this.
Yesterday, I was healthy. Today, I’m sick, but tomorrow I’ll get better because we have all these treatments and technologies in the 20th century: vaccines, antibiotics, sterilized surgery, to a lesser extent, various therapies to treat different forms of cancer that have enabled people to actually get better in ways that are unprecedented in human history.
Yesterday, I was healthy. Today, I’m sick, but tomorrow I’ll get better because we have all these treatments and technologies.
That said, even today in 2020, millions of people don’t live healthy, able-bodied lives. There are millions of people who are in remission. There are millions of others who have some kind of chronic condition, whether congenital or acquired, that disallows them from living a life of restitution. So they have to enter a different narrative or a different story, right?
And in fact, insofar as the restitution narrative, the economy that we built in the 20th century is built on this narrative of restitution. What this pandemic has revealed to us is that both restitution and the economy on which it is built are very fragile things. Any one of us is one illness or one accident away from us leaving what Susan Sontag called “the kingdom of the well,” having our visas revoked, and having to enter what she called “the kingdom of the sick,” and so the challenge for us is how do we create different narratives for those who are already ill or disabled and for those of us who may not be sick yet, but eventually we will and we won’t get better. So does our story end or can we tell a different story?
Miller (11:43–13:11): I want to come back to the question of the chronically ill, but just a couple of observations about the pandemic. One of the really phenomenal things that happened in order to prepare for the surge of COVID-19 cases was the emptying out of hospitals from their normal cases, their surgery, the cancer treatments, and so forth.
Of course, that didn’t go away. Those things didn’t go away. People were living with them, but it was as if our health system for understandable, necessary reasons perhaps, but had kind of conjured those to the shadows as we face this very acute crisis caused by the pandemic, and I think your term of the restitution narrative is very powerful, even for thinking about what has to be seen as, at least partially, a kind of collective delusion that just because we’ve declared we’re tired of the pandemic and we’re tired of sitting in our homes now that if we just reopen, the conditions that created it in the first place will have gone away, and I’m afraid that somehow that narrative has just been metaphorically transferred to this idea of reopening as an act of will rather than one that really is grounded in the circumstances.
Lee (13:12–14:28): Absolutely, I feel like just watching, for example, the stock market after its initial crash kind of rev back up in the anticipation that not only will the economy reopen and become robust fairly quickly, that we will have a vaccine that will cure us of this pandemic. I mean, I hope that there is a vaccine, but nothing is actually secure, and so yes, there is a possibility that our society and economy will be restored to normal levels, although those normal levels also have these inequalities and asymmetries of access to healthcare and the like before the pandemic, but I would just invite people to play with the thought experiment of, well, what if this pandemic doesn’t go away for another year, another two years, another five years?
Does our way of being, does our way of telling our story, whether individual or collective, stop or are we compelled to imagine even now, how might we tell a different story about who we are as a community or as a people, a nation, or world?
Miller (14:29–15:18): That brings us back, really, to the point that you were raising about alternative narratives, and perhaps alternative narratives that are particularly acute or acutely needed, in the cases of someone who is chronically ill and maybe actually adapting and living with illness over an extended period of time. You can see the relevance to a pandemic that doesn’t really go away, but requires a different kind of adaptation and living with and rethinking of some of the ways in which we think about our lives. I’m wondering if you could draw out a little bit some of your observations and lessons that you find in thinking about people living with chronic illness?
Lee (15:19–17:42): Sure, any time a person who is at one point able-bodied and healthy receives a diagnosis of an incurable condition, whether that is cancer or some loss of mobility or neurocognitive function, they often enter what Ronald Dworkin calls narrative wreckage, all right?
What illness does is it wrecks the narrative that you told about yourself, largely because that narrative you have of yourself and of your body is premised on this restitution narrative that has been promised to us by biomedicine. Once that narrative is taken away from you, what people who are chronically ill must do is to have a new ethical relation to their body, right?
And in doing so, try to craft a different story of their body. So it is a kind of opening into your body’s vulnerability, an acknowledgement of that, and a kind of meditation on what meaning comes from this new relationship to one’s body. And I would suggest that once one does that, there’s a whole new system of ethical relations that opens up.
Audre Lorde, the great queer poet and activist said upon receiving her breast cancer diagnosis, “I must consider what my body means to me,” and when she did that she aligned her now-wounded body with the wounds of other women with breast cancer, women of color who have suffered other forms of oppression, which is to say that to craft a narrative through and of one’s illness is to enable the possibility for your story to join with the stories of others who may have a different disease, but for whom share a kind of shared woundedness, and through that, a different set of, a different kind of relationality, and I would say even a different relation of community might become possible.
Miller (17:43–18:54): And you’re pointing to literature, and I know that in your work, you work with testimonials of people, you work with memoirs, you work with literary sources, and I think one of the things that the COVID-19 pandemic has really encouraged us is to look back to that legacy in literature.
We had a conversation the other day with a couple of our faculty members about classical and medieval sources of reflection on epidemics and on illness and I wanted actually to come back to my introduction where I mentioned that you’re the director for the Center for Medical Humanities, and that may be another unfamiliar conjunction of terms for people. I wonder if you could talk a little bit about what the medical humanities are, what they look at, and what some of the approaches would be, and why it might be valuable for our students and our scholars to be engaging in investigations in the medical humanities.
Lee (18:55–21:56): Sure. So I would invite our viewers to engage in a thought experiment and put yourself in the space of the clinic, whether as practitioner or patient. So all too often in that setting, practitioners and patients both get locked into what I’m going to call the biomedical algorithm, and so the practitioner, the physician will ask a set of generally formulaic questions to build the case history, to develop diagnosis, treatment, prognosis, right? And this has been largely criticized for its lack of empathetic care.
On the other hand, patients come with their own kind of algorithmic expectations. They’ll ask questions like, is there a cure? When will I get better? What’s the right treatment? Just tell me what to do, doc.
There are other elements of healthcare and illness that fall way outside this biomedical algorithm, right? And medical humanities is there to ask these harder questions that are in many ways just as, if not more important than these clinical questions. Questions like, what does hope look like in the face of terminal illness for both patients and their physicians? What dimensions of identity get lost when you enter into illness and how do you find the cultural and social elements of your life to rebuild that identity in perhaps a new mosaic? What feelings or memories emerge as data to help you in that process of restoring your life? How have the histories, how has biomedicine historically pathologized certain communities and how does that history come to bear in contemporary clinical encounters?
And medical humanities is there to ask these harder questions that are in many ways just as, if not more important than these clinical questions. Questions like, what does hope look like in the face of terminal illness for both patients and their physicians? What dimensions of identity get lost when you enter into illness and how do you find the cultural and social elements of your life to rebuild that identity in perhaps a new mosaic? What feelings or memories emerge as data to help you in that process of restoring your life?
Students in medical humanities ask these really, really hard questions because they learn through medical humanities that people, it’s not just healthy, cured people whose stories are valuable and meaningful, but in fact that illness itself is a master teacher in meaning-making, right? And the challenge for medical humanities and the opportunity for medical humanities is to explore that in all facets so that not only can medicine become a more humane enterprise, but that all of us in the clinical setting and outside of the clinical setting can engage in what Viet Nguyen would call “narrative plenitude” for all forms of embodiment.
Miller (21:56–22:47): Well, it’s hard to imagine questions that are more right at the center of our experience of being human like who am I to myself and others? What can I hope for? What’s the meaning of my life and my death? And the medical humanities really give us a profound lens to be able to think about those questions in a world where medicine looms ever larger in terms of its impact on our lives.
I really appreciate your conversation with us today and your sharing of your expertise and your views. It’s been a great conversation and I want to actually also thank our audience and to invite you to our next episode of “COVID-19: The Humanities Respond.” So thank you, Jim Lee.
Lee (22:47–22:49): I enjoyed this very much. Thanks, Tyrus.
