Managing Diabetes: The Cultural Politics of Disease. Jeffrey Bennett, New York: NYU Press, 2019, 272 pp.
Emily E. Vasquez
In Managing Diabetes: The Cultural Politics of Disease, Jeffrey Bennett brings to bear his prior scholarship on the HIV epidemic and an analytic lens deeply indebted to queer theory, feminism, and disability studies to offer a provocative reflection on how diabetes is represented in American public life. Drawing on media coverage, art, congressional testimony, law reviews, interviews with public health officials, and his personal experience living with type 1 diabetes, Bennett explores the “architecture” of popular diabetes rhetoric, affirming that “the ways we communicate about disease and illness have a direct effect on how we act upon them” (p. 8). The cultural representations he traces are often contradictory, incongruous, even deceptive, and yet they deeply influence policy choices, medical practice, and the experience of disease.
Bennett examines the popular refrain that “HIV is the new diabetes,” which has widely circulated in the United States since access to antiretrovirals dramatically extended life expectancy for people living with HIV. Numerous critics have opposed the analogy, contesting the reduction of HIV to a manageable chronic condition. Bennett, in turn, unsettles this critique, noting that it is perhaps even more problematic to interpret diabetes, as the analogy suggests, as “a condition that is effortlessly mastered” (p. 44). Bennett challenges readers to unpack the comparison of HIV and diabetes beyond the trope of “effortless management” to scrutinize the stratification of illness, the construction of certain bodies as “impure,” and the moral worth of those living with disease.
Bennett adds that while the claim that “HIV is the new diabetes” depicts diabetes as an easily manageable condition, this rhetoric simultaneously circulates alongside a contrary and ubiquitous framing of diabetes as a lethal condition. Focusing on the long-term advocacy of the Juvenile Diabetes Research Foundation, now known simply as the JDRF, Bennett notes that for decades the organization has depicted diabetes as “a source of bodily atrophy and suffering, not an ailment that can be readily governed” (p. 79), even with access to available therapies. JDRF members have widely described diabetes as a “time bomb” in the face of which “anything short of a cure is unconscionable” (p. 93). Bennett credits the JDRF’s Children’s Congress, a biannual event in which hundreds of youth living with type 1 diabetes participate in congressional hearings, with inciting urgency around this fatalistic message. At the same time, with children as the JDRF’s messengers, Bennett shows how the event adroitly cultivates hope and unwavering faith in the promise of science to eradicate diabetes-related suffering.
Importantly, these disparate renderings of diabetes in the public sphere as both “effortlessly managed” and “lethal” cannot simply be attributed to differences in the etiology or experience of type 1 versus type 2 diabetes. Instead, Bennett argues, for individuals living with either subtype the social experience of diabetes is marked by these contradictory messages and its daily management is unsettled by the tensions between these representations. This point is central to Bennett’s project. He writes: “Messages about diabetes circulate promiscuously and materialize in ways that are sometimes empowering, frequently disconcerting and habitually more convoluted than envisioned in everyday exchanges and media representations” (p. 8).
In the second half of the book, Bennett shifts to another divergent dyad built into the “rhetorical architecture” around diabetes and its management in the United States. He observes that the successful management of diabetes is most often popularly depicted as a triumph of individual strength and self-control, but also at times leveraged as a fundamentally collective struggle. Bennett illustrates the former imaginary through the case of Supreme Court Justice Sonia Sotomayor, who, in the wake of her nomination to the court by President Barack Obama, became the target of racially charged and sexist allegations depicting her as “erratic, petulant, and threatening in a legal sphere that prizes decorous banter and judicial restraint.” In media coverage leading-up to Sotomayor’s confirmation, “time and again media talking heads returned to the image of a fiery Latina whose disruptive personality would not suit the national interest” (p. 121). In response, the Obama administration publicized her lifelong management of type 1 diabetes as a testament to her prudence, self-discipline, and fortitude, emphasizing her personal triumph over the hardships she confronted growing up in a low-income section of the Bronx with limited support for tackling the condition.
While the case of Justice Sotomayor sets the stage for the individualization of public health strategies to prevent and manage diabetes, Bennett writes that actors like the New York City Department of Health and Mental Hygiene (DOHMH) have over recent decades also pushed to frame diabetes as an “epidemic”—as a communal harm that transcends personal struggle and requires community-level action. These efforts, as Bennett documents, have often met with resistance. In New York City, for example, DOHMH’s attempts to address the diabetes “epidemic” through bureaucratic action—specifically, an obligatory diabetes registry capable of tracking pockets across the city of high A1C scores (the results of a blood test that estimates individuals’ average glucose levels over a three-month period). The diabetes registry was widely denounced as a violation of individual privacy rights. Bennett argues that in the name of individual freedom, opponents of the registry unwittingly reinforced “the notion that diabetes merely necessitates personal management” (p. 158), once again deflecting systemic solutions.
Bennett concludes the book with a reflection on the relationship between diabetes management and the technological innovations that have repeatedly reshaped its contours since the advent of insulin therapy. He observes that while often only incrementally improving the lives of people living with diabetes, many of these innovations have nevertheless fueled immense commercial profit. In this context, he argues, this ongoing stream of therapeutic innovations inextricably entangles people living with the disease “in a network of power relations articulated to laborious surveillance and laissez-faire consumerism” (p. 185). Cautiously, he finds hope in increasingly prominent critiques of corporate practices like “evergreening” (which describes a corporate strategy to extend patent protections and maintain the high price of drugs), as well as in the rhetoric of patient activists and watchdog groups who increasingly call out corporate greed.Managing Diabetes complements a now growing anthropological literature that extends beyond the domain of the clinic to explore the impact of public narratives, racialized capitalism, legacies of coloniality, and the exigencies of global health science on the meaning and experience of diabetes and closely related conditions like obesity. The chapter focusing on Sonia Sotomayor would be the most accessible excerpt for undergraduate readers, providing a clear analysis of disability and race through an intersectional lens. The book will be an appropriate addition to graduate courses in the medical humanities and medical anthropology, and broadly useful to scholars interested in interrogating the social life of chronic disease.