Managing Diabetes. Jeffrey A. Bennett
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about the composition of diabetes management. I do not believe diabetes management can be easily reduced to a single theoretical heuristic, even if such ideas sometimes surface in the analysis. Resisting theoretical coherence is not an attempt to delay questions about diabetes management. Rather, it is an attempt to address how diabetes management is constituted in specific instances. The cases studies provide snapshots of how management is regarded in common parlance more than offering totalizing explanations of diabetes’s public life. Nonetheless, there is little denying that the dyads selected are ubiquitous in discourses about diabetes. The ideas of ease and fatalism, for example, are widespread in media reports, everyday interpersonal exchanges, and medical monitoring. Indeed, the tension between these two discourses sparked unending consternation when I was first diagnosed. It is not an overstatement to say that this discord provided the initial inspiration for this book.
The next chapter uses as its starting point the controversial analogy “HIV is the new diabetes” to explore how diabetes is cast as an easily managed condition. Medical practitioners who view HIV as a chronic condition have embraced the comparison, but those who cling to the notion that HIV is uncontrollable resist the association. Factions that decry the analogy tend to mischaracterize both diseases by ignoring the commonalities among the conditions and exaggerating the consequences of HIV over those that stem from diabetes. I survey scholarship about HIV’s turbulent history to mine the concepts of apocalypse, paranoia, and precarity and scrutinize pockets of resistance to HIV’s arrival as a chronic condition. These heuristics detail how HIV has come to be marked as erratic and onerous, while diabetes is situated as a disease readily controlled by pharmaceuticals or personal restraint. Not content with this conclusion, I then invert the pair to appraise how we might reconceptualize our thinking about both conditions, particularly with regard to notions of shame, self-governance, and race.
Chapter 3 looks to the advocacy of the JDRF (formerly the Juvenile Diabetes Research Foundation) and its incessant drive to cure type 1 diabetes. The organization is generally heralded as one of the most successful patient lobby groups in the United States, having raised more than $1 billion for scientific research. The JDRF’s most lauded and high-profile event is the Children’s Congress, in which dozens of young people with type 1 diabetes descend biennially on Capitol Hill to testify before the US Senate. Unlike chapter 2, which explores the idea that diabetes is easily managed, the JDRF’s rhetoric contends that diabetes is deterministically fatal. JDRF youth activists argue that management may prolong life, but no amount of personal care can stave off diabetes’s lethal arrival. The somber tone adopted by the advocates creates a melancholic projection of the future, something to which they aspire but may never see. Ultimately, I argue that fatalism has a productive place in management discourse by offering a sense of urgency to the condition to marshal institutional resources. Their pleas also resist notions of self-determination and individual responsibility that tend to characterize uninformed impressions of diabetes.
Supreme Court Justice Sonia Sotomayor and her life with type 1 diabetes are the focus of chapter 4. Sotomayor’s confirmation hearings were famously clouded by institutional racism and sexism. She was accused repeatedly of being intemperate, emotional, and illogical in a judicial sphere that prizes circumspection, deliberateness, and collegiality. Perversely, these prejudices also furnished a backdrop wherein her diabetes could be taken to illustrate her personal restraint. The Obama administration highlighted her lifetime of managing type 1 diabetes as proof of personal control and by extension judicial prudence. This strategic invocation of intersectionality, using a disability to rhetorically “contain” race and gender, was remarkably successful. Press coverage originally posited Sotomayor’s diabetes as a reason to withhold confirmation. After the White House released a letter from her doctor affirming that she had “consistent blood sugars better than 98% of diabetics,” however, this narrative was reconfigured and her condition was situated as a personal strength that would benefit the nation. Management is figured here as a transcendent mechanism and Sotomayor as a so-called super crip. Diabetes may be omnipresent, but its effects can be superseded so long as the person living with the condition “takes care of themselves.” Sotomayor’s inspirational story, which took her from a public housing project in the Bronx to the highest court in the land, inadvertently propelled an American Dream narrative that eclipsed structural impediments that complicate diabetes management.
The question of systemic intervention is the focus of chapter 5, which examines institutional efforts to curtail diabetes rates. I look to New York City’s controversial diabetes registry program, which requires all labs serving municipality residents to report A1C scores to the Department of Health and Mental Hygiene (DOHMH). The city strove to productively address the crisis facing New Yorkers by providing information and resources to those most in need. However, the government also refused to allow any person to opt out of the program. Privacy advocates argued that the city overreached in its efforts and that diabetes management regimens were best left to individual patients and their physicians. In response, the city situated diabetes as an “epidemic” to justify the program, a contentious move considering that diabetes is not a contagious disease. Despite its limitations, I argue that the “epidemic” frame can act as a catalyst for proffering resources that might aid people living with the disease. I offer a rejoinder to those who assail the registry over privacy concerns, a move that inevitably relegates diabetes to the domestic sphere void of any public character. Not to be overly welcoming of government surveillance, I also weigh the limits of the “epidemic” metaphor by mulling over a controversial DOHMH public service campaign. That PSA featured an African American actor whose lower leg had been photoshopped out of a picture to imply that uncontrolled blood sugar had made him an amputee and to warn about diabetes’s consequences. I find this campaign to be counterproductive to the otherwise laudable goals of government interference because such efforts inspire fear and individual loathing rather than engaging systemic features that give rise to diabetes rates in the first place.
The conclusion of the book, chapter 6, engages the role of the cyborg as an emergent figure for diabetes management. Using Donna Haraway’s infamous notion of the cyborg, I focus on the political potential of the concept to move beyond the machinist aspects of cutting-edge diabetes technologies. New innovations such as the artificial pancreas have actualized a rhetoric that foregrounds the “new frontier” of medical advancement, but always with the disclaimer that these breakthroughs do not actually cure diabetes. The incessant focus on the latest technological invention functions to occlude the ways corporations profit from populations made most vulnerable by diabetes. I look to the stalled efforts of developing generic insulins, which have been impeded by a practice known as “evergreening.” The development of biosimilars (generic insulins) would drastically reduce the cost of staying well for economically disadvantaged people with diabetes, but this possibility remains evasive more than a century after insulin’s discovery. The figure of the cyborg lends an appropriate close to the book, as its ontology accentuates a convergence of frames explored throughout this text: mechanistic ease, encroaching death, worldly transcendence, and institutional might.
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“HIV Is the New Diabetes”
Analogies of Apathy
“A Day with HIV in America” is a photo campaign designed to combat the stigma of living with HIV as the epidemic marches resolutely through its fourth decade. Sponsored by the nonprofit Test Positive Aware Network (TPAN), the 2011 operation kicked off with a four-minute promotional video featuring an array of advocates of differing races, genders, and ages. One of the spokespeople introduced is a young African American woman who declares that HIV is “the same as having diabetes … it’s something that you just have to manage.” This now common analogy to diabetes did not go unnoticed by the editors at Queerty, an online news source for LGBT issues, who singled out the statement and retorted, “But are the speakers in this campaign video correct when they say that HIV is ‘the same as having diabetes?’ … Is HIV really so manageable—or does