Diagnosis in Context: Culture, Politics, and the Construction of MeaningArleen Tuchman (left) and Vanessa Beasley
The 2013/2014 Faculty Fellows Program at the Warren Center, "Diagnosis in Context: Culture, Politics, and the Construction of Meaning," is co-directed by Vanessa Beasley, Associate Professor of Communication Studies and Director of American Studies, and Arleen Tuchman, Professor of History. The year-long interdisciplinary seminar will explore the types of work that medical diagnoses perform. Modern medicine typically defines diagnosis as the act of identifying or naming disease, with disease understood as a pathophysiological condition that produces characteristic symptoms and follows a predictable path. But such straightforward statements can hide more than they reveal. Specifically, they leave unexplored the power of language and labels to create imagined boundaries between and among populations— boundaries that can affect the lived experience of disease and disability as well as the allocation of resources. Letters recently met with the co-directors to talk about the 2013/2014 Fellows Program.
Letters: How did this Fellows Program come together?
TUCHMAN: Vanessa and I have been walking together once a week for several years now. During our walks, we talk about both our work and our personal lives. One of the most amazing things about our weekly conversations is how what we call the "personal" and the "professional" flow one into the other. Vanessa and I found that as we talked about our experiences dealing with family members with chronic health problems, our areas of scholarly expertise were also significant parts of these discussions. At a certain point, we realized how beneficial it could be to engage a seminar group on this topic, and we specifically started talking about the politics of diagnosis.
BEASLEY: One of the reasons that we were specifically interested in diagnosis—as opposed to different ways to think about health or other broad categories—is the fact that it represents an intersection between Arleen's field of history and my field of language. We are keenly aware that diagnoses are not just socially constructed, but are also historically variable and contested. They change across time, and there is something at stake in those changes. From a language perspective, I am interested in the fact that diagnosis is in some ways what we might consider a speech act. Once the diagnosis is uttered, once you are in that interaction with the clinician who is giving you a diagnosis, hearing it can change who you are. It can also change people around you, in, say, a family or an organization. A diagnosis can bring a change in medical status, and it can also change how a lifetime is understood or imagined as well. I am very interested in the fact that diagnosis happens through language that isn't always sufficient to the tasks at hand and their implications; it is a performative act with material, emotional, symbolic, and physiological consequences.
TUCHMAN: And those consequences can be positive, they can be negative, they can be both positive and negative, and everything in between.
Letters: How do you understand the term "diagnosis"?
BEASLEY: We talked about this often as we were drafting the proposal to submit to the Warren Center Executive Committee. One way to understand the word is as a clinical term, a description of a set of symptoms. Another way is to see the term as a social act, with implications that go far beyond clinical interaction into other accounts of social relations more generally. That is, even a layperson's perception or suspicion of a diagnosis can impact how he or she treats someone. We do this all the time when we wonder about the health and well-being of other people and if we should adjust our behavior accordingly. A third piece has to do with identity. This third piece can be the most existential: how you think of yourself and how you think about your life. And, as Arleen noted, this could be positive or negative or both.
TUCHMAN: I would add that diagnosis can also be seen as a political act, given that certain diagnoses serve political means. There is an economic dimension as well to the category. I'm thinking here about the commercials that populate television and other media, where the pharmaceutical industry takes symptoms you may be experiencing and transforms them into a category for which they can then create medicines. All of these dimensions are important. Mark Schoenfield, who is one of the Warren Center Fellows this year, is interested in diagnosis as epistemology, as a way of knowing. He is going to be looking at what kind of work diagnosis performs in periodicals in the Romantic period in English history.
BEASLEY: I study political communication and, within that context, I am fascinated by the level of perceived solidarity diagnosis can enable. You can see this sense of common political cause when football players wear pink jerseys to promote breast cancer awareness, for example. There was a recent article in The New York Times Magazine that used such examples to ask if we have made breast cancer too "cute." Likewise, I am also interested in diagnosis from the public policy angle. Certain resources are apportioned to certain groups based on diagnoses and related standards for diagnostic inclusion. There is a big debate currently about the diagnosis of autism and what to do with autism spectrum disorders, for instance. Rates of diagnosis of autism spectrum disorders have increased so quickly that some people feel like the category itself is now too broad and thus there should be an effort to narrow it. In response, there has been a huge uproar among some parents because that change would make their children ineligible for services and/or support in schools or other settings. These two sets of examples show us that diagnosis frequently has political implications, both at the symbolic and policy levels.
TUCHMAN: I think that one of the reasons that it is easy to make breast cancer "cute" is because it doesn't evoke any notions of blame. When you hear that someone has breast cancer, there isn't any obvious way of determining whether or not they are responsible for having contracted the disease. So a diagnosis also has embedded in it assumptions about etiology. Letters: How will you incorporate an interdisciplinary approach to your explorations of the theme?
TUCHMAN: Listening to each other talk about these shared interests from different disciplinary perspectives will be a big part of the seminar. Several disciplines are represented in our Warren Center Fellows group: English, history, communication studies, sociology, anthropology, and ethnomusicology. At our preliminary meeting last spring, Greg Barz, who is the ethnomusicologist in our group, said, "Oh look! We've got three social scientists and three humanists!" We are aware that each of the disciplines employs different tools and different methodologies. Members of the seminar may very well be just as interested in learning about each other's approaches as they are in learning more about diagnosis.
BEASLEY: All disciplines have what Kenneth Burke called "terministic screens." That is, as a scholar, you have been trained to look at your texts, subjects, or phenomena in certain ways. That training helps you see things based on your discipline's framework, and what you see usually answers your research question in a way that other scholars in your field can understand. But all terministic screens also have blinders. So one of the things that is really exciting about the potential for this kind of conversation is not to think so much about whether or not you are looking at your question and data correctly according to field-specific standards, but instead to hear someone say, "Oh wow, look at these other things that you and your methods may not be able to see."
TUCHMAN: Perhaps we will be able to have a clinician meet with our seminar during the year for a conversation, as physicians have a lot of angst about this too. Jerome Groopman, the author of How Doctors Think, wrote this book as a way of encouraging health care consumers to push their doctors in the clinical setting because often doctors make diagnoses very quickly. He wants patients to feel confident enough to ask questions and to push their physicians to think outside the box.
Letters: How do advances or changes in science and medical technology also change diagnostic categories?
TUCHMAN: One of the questions we are sure to be addressing is what genetics is doing to diagnostic categories. Historically, diseases were not thought of as discrete entities. Names were important for heuristic reasons, but diseases were believed to morph into one another. Basically it was a question of the balance of humors. What I have seen in my work on the history of diabetes is the shift from an individual "having a diabetes" to "becoming a diabetic." In this way, disease entities became the way of thinking about what was going on pathologically. Most of this transition took place over the course of the nineteenth century and got set in stone with the discovery of the bacterial causes of infectious disease. Yet this way of conceptualizing disease has never been perfectly satisfying and now genetics is just blowing this out of the water. With the push now to determine an individual's particular genetic makeup, and an awareness that individuals respond differently to a set of interventions, the idea of disease as a discrete entity may once again need to be reconceptualized.
BEASLEY: The other aspect I would add concerns relatively recent developments in the visual representation of disease. The idea that you can see disease in particular ways has so many implications beyond the clinical; this is fascinating to me. Think about the human brain. We have centuries of examples, across traditions, Eastern and Western, about people talking about the brain and the mind as being related but also separate. And now I think what we are seeing, particularly with scanning technologies, is the idea that we can look inside the brain and see what's going on not only with disease but also with emotions. This is an exciting development, of course, and one that can change common assumptions about epistemologies. It could change the way people think about the capacity for emotion, about relationships, and about what it means to have a "healthy brain." This all connects with something people in contemporary Western culture cannot get enough of: we want the pictures, and we want those pictures now.
TUCHMAN: In his book Prescribing by Numbers, Jeremy Greene explores the ways in which these diagnostic tests allow us to identify conditions before anyone is symptomatic. I joked with my husband that I'm going to stop going to my annual medical exam because I walk in healthy and I walk out with several diagnoses. Greene's book engages with this issue; he asks us to think about what it means to feel healthy, but then to undergo tests that produce numbers that suggest you are pre- this or pre- that. Have we gotten to a point that we are treating conditions that are not yet diseases? This has radically altered the way we diagnose.
Letters: Can you give an example of how terms like "diagnosis" and "disease" might, as you have said, "hide more than they reveal"?
BEASLEY: For me, the question of how diagnosis hides more than it reveals gets to questions of how and when diagnostic labels can diminish our understanding of someone else's humanity. That's the move I get concerned about. If you are introduced to someone who has Down syndrome and you leave the interaction thinking about that person as Down syndrome (as opposed to as a person who has a certain diagnosis and also likes the same music and baseball team that you do), there's a certain type of problematic hiding going on there. For this reason, within the disability community, we talk about using "people first" language. You would never say "my cancerous uncle," for example, you would say "my uncle with cancer." So to put the diagnostic category second is part of the idea that what we don't want to do is to hide the person or her or his humanity. We want to behold the person first.
TUCHMAN: We can also see how diagnoses hide more than they reveal when we examine the cultural meanings ascribed to certain diagnostic categories. For example, there is a battle going on between individuals with type 1 and type 2 diabetes. Some people who have type 1, which manifests more commonly among the young, are saying that they want a different name for the disease. This captures beautifully the power that a name can give to a condition. If the diagnosis was simply a neutral description of the changes that occur to a person physically and mentally, we wouldn't be having a seminar next year! To want a different name for type 1 means that those with this form—and their advocates I should add—are rejecting the various meanings associated with the label of type 2. I would say all of those meanings are hidden, and we're looking for ways to unpack them.
Letters: You're working with Humanities Tennessee on a project for the 2013 Southern Festival of Books on October 11-13. Can you tell us a little about that?
BEASLEY: We are working with Humanities Tennessee on a program entitled "Taking Our Pulse: Promises and Pitfalls of 21st-Century Medicine" that will be woven into the larger festival. We have developed a list of authors whose work on diagnostic categories or their experience with diagnoses is likely to be compelling to the public, either through fiction or non-fiction. In addition, we would like to explore issues related to a writer's craft that have to do with questions of how much you disclose about your own personal experience. We're all human, we all have these experiences with diagnoses, and we all know it can be really affirming to find out, "Yes! There is something wrong with me!" but it can also be devastating to get that message. What does a writer do with such feelings? How can they be expressed?
TUCHMAN: Members of the Fellows Program will serve as facilitators for these sessions at the Southern Festival of Books. Some of the speakers in the series will include Victoria Sweet (God's Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine), Susannah Cahalan (Brain on Fire: My Month of Madness), and Kelly E. Happe (The Material Game: Gender, Race, and Heredity after the Human Genome Project). We're also going to work with Vanderbilt iLens [International Lens Film Series] and will suggest some films that can be shown as part of their series that relate to the fellows' program theme. We are all very enthusiastic not only about the work that the seminar will be engaged in this year, but also about the opportunities to engage with the public on issues related to the culture, politics, and meanings of diagnoses. I am confident it will be a fruitful year for all of us involved in the Warren Center Fellows Program.