Her goal is not simply to tell forumites about diabetes, but to illustrate how we might think about management anew through frames emphasizing activism, queerness, and disability free of social stigma. Such testimonials are vital to expanding the umbrella of management rhetorics and reconfiguring how diabetes might be made knowable.
The incorporation of experience, such as the testimonial above, into studies of health and medicine risks dismissal when litigated through a biomedical model that devalues personal narrative.63 Certainly, the experiences of one individual will inevitably fail to match wholly with those of others, especially when intersectional considerations of identity and geography are taken into account. Nonetheless, the anecdotal is a reflection of a wider field of discourse that surfaces among a spectrum of possibilities. Foucault was one of the many philosophers of medicine who was “fascinated by the ways experience as well as intellectual inquiry contributed to understanding, the authorization of role, and forms of subjectivity.”64 Giving presence to the lived realities of some bodies over others risks hasty generalizations and reckless universalizing. And, yet, the same can be said for conglomerations of data, abstract theoretical terms, or scientifically essentialized categories. Still, just as Lauren Berlant and Michael Warner explored the power of counter-publics through a now infamous example of erotic vomiting in a Chicago gay bar, so too can a peculiar exemplar or representative anecdote lend insight into the normative forces of culture.65
Let’s consider the 1989 film Steel Magnolias, which probably influenced public perceptions of type 1 diabetes more than any other popular culture artifact in a generation. When I was hospitalized after being diagnosed, a good friend walked into the ICU where I was recovering and declared, with unbridled bravado, “Drink your juice, Shelby!!!” He was referencing a character in the film, played by Julia Roberts, who lives with an especially perilous form of type 1 diabetes. During a pivotal scene in the movie, Shelby experiences a violent bout of hypoglycemia in the salon, Truvy’s Beauty Spot, where much of the film takes place. Her mother, played by Sally Field, forces Shelby to drink juice to rectify the medical emergency. Shelby resists the sugary drink and shakes uncontrollably during this portion of the film while her mother infantilizes her in front of the other characters. This intense interaction is perhaps the most iconic scene of the production (the spectacle helped to garner Oscar nominations for both Roberts and Field). Although I take some exception to the exaggerated nature of hypoglycemia as it is depicted in the film, it is likely no accident that one of the most common refrains I encounter, part of the “absent archive” of my everyday life, is people believing that juice is the most effective antidote when my blood sugar is low.66 As generative as the film has been to the camp lexicon, it problematically depicts diabetes as an explosive condition, one that is both dangerous and, appropriate to the genre, utterly dramatic.67 As life-threatening as hypoglycemia may be to people with diabetes, these momentary fluctuations are usually simple to amend and they pass quickly.
This widely consumed and circulated scene is perhaps most problematic because it suggests that people with diabetes are unable to gauge the intractableness of their disease. Shelby is lovable, yes, but also represented as being in serious denial about the permeability of her body. She bickers constantly with her mother about having children, a choice her alluded-to doctors warn against. But this is melodrama, so Shelby ultimately pursues pregnancy. This choice, which structures the last third of the film, eventually kills her. Of course, reading Steel Magnolias through a clinical lens of management leads to a pretty transparent conclusion: Diabetes killed Shelby. However, if we take a page from the tudiabetes.com blogger above and shift our perspective for assessing the narrative, a queer heuristic for exploring management exposes what is perhaps most unsettling about the film: heterosexuality. Throughout the movie Shelby insists that her body is a productive one, vigorously defending the possibility that her diabetes can be overcome. Shelby’s compulsive desire for children seems as essential as her need for insulin. Indeed, in a film that champions the queerness of kinship, Shelby’s heterosexuality is every bit as volatile and precarious as her diabetes. It is not simply that diabetes could have been managed, it’s that Shelby consciously chose to ignore the constraints of her body and insist that she is “normal.” Reproductive heterosexuality appears to have killed Shelby every bit as much as her irregular blood sugar did. Historically queer and disabled characters have met unfortunate, if not punitive, ends in Hollywood cinema, and Shelby’s non-normative being, regardless of her girl-next-door persona, conclusively defeated her. Articulating management to notions of heterosexuality, in this particular case, alters how illness might be deciphered.
A production like Steel Magnolias highlights one of the many ways people might come to process diabetes—their own or others, rightly or wrongly—outside of proscriptive medical appraisals. People formulate interpretations of disease in assorted ways not reducible to the patient-doctor relationship or clinical data. Diabetes is no exception, with the word “management” itself denoting degrees of flexibility and contingency, if not hazard and risk. As I was writing this book I repeatedly encountered accounts of diabetes that were fascinating, surprising, and disturbing. At least two children died when their parents elected prayer as treatment over medicine. A school district prohibited a boy with diabetes from playing baseball, fearing no adults were qualified to address the hypoglycemia he might experience. They also clearly violated the Americans with Disabilities Act when they refused to hire a nurse to accommodate him. On that note, sometimes diabetes is framed as a disability and sometimes not. Public figures such as Mary Tyler Moore, Jay Cutler, Halle Berry, Sonia Sotomayor, and Bret Michaels spring to mind when thinking about diabetes. Their biographies tend to accentuate discipline, transcendence, and redemption over structural barriers and economic hardship. Many young people know what they do about diabetes because of Nick Jonas, who frequently poses shirtless to show off his muscular physique and visually demonstrate that the siphon is being defeated. Others will immediately think of Wilfred Brimley and his slightly divergent pronunciation of the disease. Controversies, both individual and institutional, abounded during this book’s production. Media outlets became fascinated with so-called diabulimics, young women who withhold insulin to lose weight and control their sugars. Their narratives of excessive self-control provided a cautionary tale about restraint, allegorizing the ways management can haunt those it is meant to help most. On the other end of the spectrum, as part of a health campaign the New York City Department of Health and Mental Hygiene (DOHMH) circulated a photoshopped image of an African American man who they erroneously posited had lost a leg to diabetes. The image, scrutinized in chapter 5, called into question the ethics of public health and its incessant desire to reach citizens. New drugs, new insulin pump technologies, and the promise of an artificial pancreas came across my screen consistently as I wrote. None of these anecdotes are meant to evacuate the important medical realities of management, only to say that a variety of affects, logics, and emotions come into play when assessing the vivacious character of diabetes and its management. Managing Diabetes focuses on a series of case studies in order to ruminate on the divergent ways management is realized in public culture. In what follows, I submit an extended example to conclude this chapter and exemplify how a move away from a clinical perspective might divine insight into the paradoxes and dislocations of diabetes on a level that is cultural every bit as much as it is medical.
The Art of Care
Jen Jacobs is an artist and schoolteacher in New York City living with type 1 diabetes. In her senior year of college, Jacobs began using art as a medium for dealing with chronic disease in ways that were not reducible to medical parlance. Her paintings take as their object of study varying aspects of diabetes management, ranging from the pseudo-realism of insulin vials to the ephemeral, though deeply alarming, effects of hypoglycemia. Each painting portrays some aspect of daily life for those who are insulin-dependent, concentrating on the temptation of sweets, the intrusive questions asked by acquaintances, and affective bodily responses that lie outside the trappings of language. Taken together, her compositions are collectively generative, pointing to contradictions and incongruities that lurk in the pursuit of personal well-being.
Figure 1.2. Jen Jacobs, “Routine.”
