Looking back a decade, Carolyn Rouse reflects on her 2004 article in the American Ethnologist, "If she’s a vegetable, we’ll be her garden: Embodiment, transcendence, and citations of competing cultural metaphors in the case of a dying child.”
In a conversation with AE editorial intern Allison Bloom, Rouse considers her 2004 AE article in relation to her subsequent research, and talks about the play of racialized signifiers, health care disparities, religious semiotics, and “letting go of pity.”
Allison Bloom (AB): In light of your current work on race, medicine, and religion, as well as the evolution of medical anthropology, what are your thoughts revisiting your 2004 AE article today?
Carolyn M. Rouse (CR): My first thought is to thank you for encouraging me to revisit my article. When I’m done writing an article, which for me means solving a puzzle, I tend rarely to look back. When I entered the field, in this case several children’s hospitals, my goal was to find the cause for racial health disparities in order to offer a solution. I now laugh at my naiveté. But at the time public health experts linked disparities to racism in the clinic. What I found was a complex play of signifiers not easily traceable to racism per se, but entirely racialized.
AB: Specifically in this article, you develop the notion of “embodiment-by-proxy,” or “the reconstituting of bodies and meaning through the deployment of cultural metaphors” (2004:522). How has this concept continued to inform your work, and where else do you imagine this concept may be usefully applied?
CR: At the same time I was working in medical anthropology, I was also finishing my dissertation and book on converts to Islam, Engaged Surrender. Work on embodiment and the self had captured my imagination. I was particularly fond of the work of Richard Shweder and Clifford Geertz, but I was struck by how their own privileged subject positions meant that they missed how diverse notions of the self exist not just between cultures but within cultures. In particular, class, status, gender, all these identity diacritics inform our sense of self. Racism, for example, is often described as misrecognition. That means that whatever you think about yourself, whoever you think you are, most others do not. What DuBois described as double consciousness is a good start for considering the psychology necessary to live in a world where your sense of self is not reflected in how others treat you. Double consciousness is a good start, but that only begins to scratch the surface of what how race impacts consciousness, choice, and action. Embodiment-by-proxy describes one method for controlling how others read you. A basic idea in consumption theory is that we surround ourselves with signifiers that act as proxies for who we think we are and who we want to become. For this family, they were trying to signify not their identity, but their child’s identity. They had to humanize her in order for her to continue receiving treatment.
AB: In the article, you focus on a particular case study: a marginalized family that is able to gain an unexpected level of influence over the care of their fatally ill daughter, Jasperlynn, by gaining access to and utilizing a semiotic moral economy. Can you speak to the importance of recognizing the power of religion as a semiotic resource, particularly in U.S. medical anthropology?
CR: I’m not sure if you mean the religious semiotics in medical anthropology or in medicine in the U.S. so I will speak to both. While some of the most fascinating ethnographies are in the sub-field of medical anthropology, quite a bit of the literature houses a redemptive narrative where the anthropologist exposes structural violence in order to expose the perpetrators and save the victims. So religious semiotics is often a part of medical ethnographies. But in some ways the U.S. medical system is asking for this type of criticism. The medical system believes its own press, meaning doctors, hospitals, drug companies all benefit from the hypervalorization of medicine as the instantiation of our greatness as a compassionate, democratic, free, and advanced civilization.
AB: So you see yourself making a different intervention here?
CR: I try not to see people as victims and as perpetrators. I try to avoid those caricatures and advise my graduate students to do the same. One thing that I think that most humans do, or feel, is that even if there is racism, even if there is double consciousness, that they have meaning and they have value in the world. These pity discourses, where subjects are treated as non-agentive, erase the work that people do to gain status in their own moral universe—moral economy. Even in my book on sickle cell, Uncertain Suffering, I try to say that the reason I’m studying this is not because of me, but because this is something that the U.S. government has decided matters, which is eliminating racial health disparities. So it comes from looking at an internalized debate, rather than me deciding, a-priori, that this is something that needs correcting. And in fact, in that book, I even ask what is a racial health disparity? Already housed in that seemingly simple description are notions of race, notions of the connections between race and community, and environment, and geography. There are so many things housed in that which need unpacking.
AB: What counts as health…
CR: Yes, what counts as health, another social construction.
AB: Could you also say that in addition to religion, recognition of suffering is an important source of moral authority? How might this be counteracted or supported by simultaneous racial recognition?
CR: Suffering is a very religious trope. With rare exception, nobody wants to think that they contribute to the suffering of others. So if a group suffers disproportionately and the fault may be traced to us, we often deflect responsibility by dehumanizing or devaluing them. Trayvon Martin wore a hoody, Michael Brown allegedly robbed a store, both had marijuana in their systems. So then it takes the group to flip the narrative, rehumanize the victim in order for the story to be about racial injustice. This group work is necessary for racial recognition. But it’s never complete.
AB: Your article focuses on the body of the daughter, Jasperlynn, as part of a familial and medical community, rather than focusing on her body as that of an individual, for example as a human rights framework might. In the ten years since the article was written, how do you see this particular line of thinking informing research in U.S. medical anthropology—or if better put, in U.S. medicine—especially considering our medical system’s continuing neoliberal ideology?
CR: When I read the work of utilitarian bioethicists like Peter Singer, I appreciate the desire for a consistency of approach, which in his case is to measure the value of a life based on sentience. But I think his work goes against what we know as anthropologists. The value of a human life is defined by others, not by some abstract scale. I saw this again and again in the clinic. Black patients and their families had to work hard to demonstrate the value of their lives. And to a lesser extent white patients did so as well. We want to believe that we have the moral capacity to view and treat everyone the same, but even Mother Teresa’s compassion was the product of a deep engagement with textual readings of scripture and her faith. Seeing that someone’s life matters to others helps us understand the value of that life. I’m certainly glad that we have human rights discourses in the same way I’m glad journalists strive for objectivity. Like religious texts, these international doctrines compel us to be reflexive about how we view and treat others. But when Ron Paul was enthusiastically applauded because he said that an uninsured 30-year old man should not receive treatment, one can see how thoroughly conditional our compassion is. The Affordable Care Act links treatment to citizenship rather than wealth, or in the case of those eligible for state insurance, access. This does not erase racial misrecognition, but it reduces a reliance on the politics of pity for treatment access.
AB: How do you see this family’s strategy of turning bodily metaphors into objective facts as informative for thinking through our current debates and struggles over the U.S. health care system?
CR: Jasperlynn was seriously ill and at a personal level, I thought the parent’s desire to keep her alive was misplaced. I didn’t include that information in my article because my feelings were beside the point. But my sense is that there always have to be limits on health care, and for good reason. More health care doesn’t necessarily translate into better health or quality of life. What a national health program does is push decisions about how to limit care into the national conversation (at some level).
AB: While working in situations where the power differential between the people you study is so great (in this case, a marginalized family and a hospital team), how do you negotiate your own positionality and your research participants’ expectations? What would be your advice to graduate students undertaking similar research?
CR: The one concern I have is that my presence kept the hospital from stopping treatment. They knew that I was following the story. I’m not sure the family saw me as more powerful than them. I think there are many reasons we spent so much time together that are complicated. I think most anthropology graduate students are hyperaware of power differentials so I don’t have any advice there. My only advice is to let go of pity. Pity takes anthropologists into unproductive analytic spaces.
AB: I think that’s really interesting—this idea of letting go of pity. How there’s that line between pity and wanting to do engaged anthropology where you’re advocating for people. But how do you make sure you’re not setting yourself up for that kind of a dynamic?
CR: This work came out of this transformation where racism, in the ways that we imagine in the 1960s and before, just doesn’t exist. It’s not what people imagine it to be. There are all these euphemisms—proxies—for ways in which racism gets housed. It’s interesting that I’m returning to visual anthropology. It’s how we play with the narratives housed in all these signifiers, which are tied to history, tied to current discourses that are in play, and that sometimes empower because they open up certain types of agency that people can slip through. Obama is a perfect case study of someone who manages to navigate in this treacherous terrain. And of course he gets berated for doing this as well. So he does what he needs to do in order to be the president of the United States. But he’s definitely an example of someone who had to manage this complexity and he’s done it very successfully. So you look at people like that and say, there’s no more racism, but if you can’t navigate this, then…
AB: The fact that you have to navigate clues us into something still going on. In the case of the article, it’s not that there was this vision of racism as we might imagine it.
CR: They slip through with this other racism, this wonderful dialectic… They were able to manage to be seen as a loving, functional family, because they were going against this racist iconography coming from the 1960s culture of poverty theories, so that’s how people navigate. And sometimes in ways that actually reproduce those discourses that are repressive. And that’s what I found with the sickle-cell community too…It’s this performance of moral character which gets into this whole politics of pity, which doesn’t do anything to actually help African Americans in general. It just helps a particular group of African Americans with a very particular disease, and only sometimes. Because if they step outside of that narrow frame of what constitutes moral character – those who won’t be seen as drug-seeking or malingering - then they get denied health care anyway. That’s what Hannah Arendt talks about when she writes about the politics of pity. Pity discourses don't address social justice concerns.
AB: Do you think that’s the kind of intervention that ethnography can make?
CR: Ethnography can amplify the voice of people who are quiet, and who are trying to do something else that they claim works that everybody else is ignoring.