UNIVERSITY OF IOWA
My current research project is a continuation of work I completed on the relationship between blood symbolism, public policy, and the cultural construction of citizenship. I am currently investigating the concept of “management” employed by institutions to regulate and discipline the bodies of people with diabetes. Typically couched in a language of personal responsibility and enshrouded in a discourse of blame, diabetes is rarely treated as a symptom of systemic harms or as a communal ill that can be collectively defeated. Rather, people with diabetes are perpetually constituted as having a “manageable” disease whose effects can be transcended so long as they “take care of themselves.” Focusing on the intersection of rhetoric, critical health studies, and cultural theory, I probe how such discourses deflect attention away from a cure and render the everyday complications of diabetes mute.
This project emerges from previous research, drawing heavily from resonate arguments about the management of HIV. Scores of medical studies now focus on both diseases simultaneously, but the implications of this analogy remain understudied. I am utilizing the intersection of disability studies and LGBT/queer studies to initiate these works. In both diabetes and HIV discourses we find ongoing rhetorics of management, projections of guilt and shame, imagined bodies of excesses, deliberations emphasizing epidemics, pharmaceutical exploitation, and near impossible projections of normative citizenship.
As a person with type-one diabetes, this project is also very personal. As any person with diabetes can tell you, the vernacular uptake of management rhetoric is perhaps most problematic in everyday life. Well-intentioned friends and relatives frequently adopt contorted forms of science and medicine to fit with cultural imaginaries about well-being and personal control. Because I am hoping to develop a book from this research, my scholarship engages multiple facets of diabetes, including: the structural and institutional elements of management (city programs designed to help people with diabetes), the cultural politics of diabetes (the debates over renaming type-one diabetes, advocacy groups), the rise of management rhetoric more generally (using diabetes as a the foundation for examining the management of HIV), and how people with diabetes understand the enabling and constraining possibilities of management rhetoric.
KEYWORDS TO DESCRIBE WORK
Cultural, theoretical, intersectional, political, grounded, rhetorical.
WORK IN RELATION TO SYMPOSIUM KEYWORDS
The words connections and theory relate most to my work.
I seek to make connections across academic literatures, especially at the intersection of queer theory, disability studies, and medical rhetorics. Ill, diseased, and nonnormative bodies are frequently compared to an imagined universal, offering a valuable entry point for humanistic research. With some effort, I would also like to connect with others inside (and perhaps outside) the academy studying diabetes, such as scholars in public health and relevant facets of medicine such as endocrinology. My work is also invested in theorizing the body in relation to discourses of health and medicine. Theoretical explorations of heterosexuality gave rise to notions of normativity and I would love to further explore such opportunities for health imaginaries through diabetes.
- How do you explain/define what you do to medical personnel and/or other stakeholders in the research process or to the public?
Generally I say that I study how people make meaning out of illness, disease, and health. As a person who has long studied LGBT communities, I generally relay that I’m also interested in how our understanding of norms enables and constrains a person’s ability to stay well. Sometimes the ways people make meaning of their health lines up with traditional medical approaches and sometimes not. Why people act in a particular ways toward their bodies is far more interesting than why they do not conform to medical adherence. In the case of diabetes, I believe people act in ways that are driven by investments in the understanding of the self in context and the variables guiding the contingencies of their lives.
- What research challenges have you experienced and how did you solve them? Choose to focus on one or two specific examples that can help the group develop strategies for overcoming these types of challenges.
My greatest challenge as a researcher is also my most powerful asset. I’m incredibly close to my topic because I have the disease I’m studying. This standpoint can be both enabling and constraining, both productive and frustrating. Perhaps the greatest struggle I’ve faced is bringing empirical evidence to anecdotal experiences (both my own and that of others). As a humanist, I value the anecdotal because I believe unique case studies and contingent aspects of quotidian life can offer insight into generalities. For example, literature about diabetes tends to assume that medical professionals know a great deal about diabetes. This should, of course, be a taken-for-granted assumption. However, this has not been my experience. I’ve had two physicians tell me out right that they know very little about diabetes, another who insisted I had type-two diabetes, and yet another who attempted to change my prescriptions on a first visit without explanation or input from me. On a ground level, I question certain premises of expertise, even as I believe each of these physicians acted in good faith. This is not to say that every doctor that has treated me has engaged in questionable practices. I’ve had some pretty amazing doctors as well. I also do not ground all of my work in personal experience. Still, bringing such suspicions into research is not always greeted with open arms. On the other end of the spectrum, the things said to me in everyday life significantly alter how I understand diabetes to be publicly mediated. I’ve had dozens of people speak to me about people they knew who had diabetes (the level of blame aimed at the dead is astounding), I’ve been shamed by everyone from colleagues to optometrists, and the structural impediments to staying well surround me. These experiences are not always received well by those who want empirical proof where it is not easily found.
My apologies if these challenges are esoteric to my identity. But, perhaps the issue I can most raise is, how to we challenge that which is most commonsensical to us? How do we utilize it? How do we get humanists, who are often invested in being taken seriously by medical professionals, to embrace that which health and medicine might overlook or disregard?
- What do you see as the primary distinctions between a “humanities” orientation to research and a “social sciences” orientation? what is at stake in these different orientations?
Like many others at the conference, I come from a department that is composed of both humanists and social scientists. I’ve found fruitful points of connection with my social science colleagues, even though we are generally engaged in differing kinds of projects. First, I think we have some strong connections. Among both social scientists and humanists there is a continued value placed on having “real-world” impact, though this is often measured in different ways. I also think the methods employed by both social scientists and humanists are increasingly blurry, with each now frequently utilizing interviewing material and ethnographic research. Finally, both social scientists and humanist have theoretical blinders that sometimes limit conclusions (certain forms of ideological critique in the humanities come to mind). Perhaps the starkest differences continue to be in the ways we ask questions, the ways we process findings, and the form that our scholarship takes. I am not trained as a social scientist, so I cannot presume to speak as one. But, it strikes me that a central concern for those researchers is assessing the predictability of phenomenon. The implementation of survey research and statistics to engender the study of predictability does not generally spill into the humanities. In rhetorical studies I believe we still find the strong value in the contingencies of a case study, even if we are informed by theoretical concepts (such as norms and normativities). The focus on power and its relationship to everyday life seems to be a continued motivator in humanistic research as well.