Managing Diabetes. Jeffrey A. Bennett

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СКАЧАТЬ or help us to understand why public misperceptions of diabetes continue unabated. Using a series of case studies, I look beyond the clinic to engage how management paradigms disseminate among publics and, in the process, reinforce some interpretations of the condition while disregarding others. Scrutinizing management’s parameters can both disrupt taken-for-granted notions about the ease of control and better equip people with diabetes to navigate how their bodies are surveilled by those promoting well-being regimens. The rhetorical architecture of management helps to explain why some policies are privileged over others, why some forms of activism are effective and others are not, and why some technologies are adopted as curative while others are rendered obsolete. Diabetes’s formidable presence is sustained by a host of social, cultural, and economic articulations. And that complex array of significations, brought to life by the composite structure of “management,” is where we begin.

      Diabetes: A Crisis of Signification

      Humanistic, social scientific, and medical investigations of health teach us that the ways we communicate about disease and illness have a direct effect on how we act upon them. When I submit that management is a condensation of disparate referents, I simply mean that diabetes can only be known through a language that is stretched to generalize across millions of bodies. The constitutive power of language to formulate attitudes and conceptualize strategies for care is not merely descriptive, but essential to diabetes’s mystifying qualities. Narratives, anecdotes, and myths are decisive in their ability to energize patient feelings, guide medical deliberations, and arrange classificatory hierarchies. Consider the following pieces of information, each of which actualizes diabetes in specific ways, but which are also collectively greater than the sum of their parts: More than 29 million people in the United States, in excess of 9 percent of the population, have some form of diabetes.11 That’s more than the number of people who live in the state of Texas. Of that, more than 8 million people remain undiagnosed, which is roughly the equivalent of Virginia’s population. Adults with diabetes are two to four times more likely to die of heart disease or have a stroke than those without it. As a result, life expectancy rates are seven to ten years shorter for people with the condition. Diabetes is the leading cause of blindness and kidney failure for adults and is the source of roughly two-thirds of all nontraumatic lower-limb amputations. People with diabetes are also twice as likely to experience depression as those without it.12 Minority communities and economically marginalized populations continue to be ravaged by the disease and its devastating consequences in disproportionate numbers. Diabetes costs the United States about $327 billion annually in lost wages, healthcare expenditures, and related factors.13

      These statistics delineate one way that diabetes can be made intelligible, feeding narratives with expectations, urgency, and obstacles that narrow the focus of its symbolic and material parameters. What is more unclear but equally significant is the effect this cumulative data has on public perceptions of the condition. The above statistics outline trauma and despair, lending an air of inevitability about the chances of survival. What are we to believe about the livelihood of those with diabetes if the above figures are privileged? Might these measures affect their everyday habits? Could this avalanche of information contribute to feelings of embarrassment, rates of depression, and resistance to medical advice? In isolation from other considerations these figures could denote a structural rendition of disease that relies on the biopolitical power of statistics to chart patient compliance and health outcomes. The numbers most certainly frame diabetes as a national crisis, influencing allegories about the purity of the homeland, the alleged dissolution of the nation’s work ethic, and even the perceived standing of the United States as a global superpower.14 The gravity of public narratives is puissant and the above statistics become meaningful when articulated to socially sanctioned truths: that control can always be strengthened, that healthcare systems are broken, that an epidemic is looming.

      Contrasting the epistemological certainty of statistics against the parlance of management immediately exposes diabetes’s capriciousness. If you google the phrase, “things you should never say to a person with diabetes,” for example, multiple lists appear detailing the daily annoyances confronted by those who live with the disease. “You’ll grow out of it,” relays one person of the condition, noting the confusion stemming from the phrase “juvenile” diabetes. Another contributor laments the refrain, “you must have the bad kind,” a mysterious colloquialism considering no form of diabetes is without complications. Even seemingly absurd quips make appearances on these lists: “I know all about diabetes. My cat has it!” Feline diabetes, while no walk in the park for the cat, is far less complex than that of its human counterparts. Among the most recurring nuisances reported by those composing the lists were messages that confuse type 1 with type 2: “You just need to eat better and get more exercise,” reports one participant. “But you’re not fat,” writes another. “If you lose ten pounds, you could go off insulin,” a blogger remembers with disbelief. Individuals posting the lists acknowledge that most interlocutors are well intentioned, even if their input creates an atmosphere inhospitable to actual care regimens. And while many of the lists do not do a remarkable job of dispelling the shame that tends to accompany comparisons between type 1 and type 2, they do underscore how little many people actually know about diabetes, despite its ubiquity.

      When Treichler penned How to Have Theory in an Epidemic, her groundbreaking tome about the early years of the AIDS crisis, she noted that even those renderings of HIV/AIDS that were not scientifically “correct” lent insight into the ways medical phenomena are deciphered. Haitians, for example, were never disproportionate carriers of HIV, despite being one of the original “four H” risk groups.15 But their inclusion in that classification revealed much about how the United States conceived the relationship among race (and by extension racism), nationalism, and disease. AIDS was not, we can assume, a punishment from above, but suggesting that a deity was disciplining gay people influenced the response to HIV for decades in places of worship that extended from the Vatican to churches in the American South. Put simply, there is no separating medical epistemologies from their cultural domains. Before moving on to the vast forms diabetes management adopts, which can be as fanciful and bizarre as Treichler’s list for AIDS, I briefly outline the types of diabetes that are predominant in the medical sphere, even if such designations are not themselves always semiotically stable.

      Typologies of Diabetes

      Diabetes tends to be distinguished in three ways: type 1, type 2, and gestational. Type 1, previously referred to as “juvenile” diabetes, is an autoimmune disease that strikes suddenly and develops rapidly. Once associated with youth, type 1 is now signified without the prefix of “juvenile” because it can manifest at any time during the life span and most people who have it are not children.16 Although the precise cause of type 1 diabetes is a mystery, it is ordinarily accepted that the immune system mistakenly attacks and destroys the insulin-producing beta cells of the pancreas. It is not fully understood why the body misrecognizes itself, though scientists have speculated everything from a viral intruder to genetic predispositions, to some combination thereof.17 As a result, the pancreas is unable to regulate glucose levels, neither producing insulin nor recognizing when trace amounts of sugar are needed to keep a body in motion. Without insulin, the endocrine system is unable to transform sugar into glucose, which cells depend on for energy. As such, insulin must be injected into the skin by a mechanical pump or a needle. Insulin is not without its annoyances. Take too much and blood sugar will drop dramatically, producing a condition called hypoglycemia that can cause fainting, unconsciousness, or rarely, a diabetic coma. Conversely, too little insulin spurs hyperglycemia and the accompanying effects of ketoacidosis. There is no cure for type 1 diabetes, so insulin injections are indispensable to survival. This is the more unstable and hence fantastic form of diabetes seen in films such as The Panic Room and Steel Magnolias.18 The fact that type 1 is largely invisible—both interpersonally and in the public sphere—likely contributes to the idea that it can be casually managed.

      Figure 1.1. Image featured in The Independent article, “Diabetes Could ‘Bankrupt the NHS’ After 60% Rise in Number of Diabetes Cases, Charity Warns,” СКАЧАТЬ