Читать книгу Managing Diabetes - Jeffrey A. Bennett - Страница 8

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Critical Conditions

Besides, I think that the cicadas, who are singing and carrying on conversations with one another in the heat of the day above our heads, are also watching us. And if they saw the two of us avoiding conversation at midday like most people, diverted by their song and, sluggish of mind, nodding off, they would have every right to laugh at us, convinced that a pair of slaves had come to their resting place to sleep like sheep gathering around the spring in the afternoon. But if they see us in conversation, steadfastly navigating around them as if they were Sirens, they will be very pleased and immediately give us the gift from the gods they are able to give to mortals.

—Socrates, Plato’s Phaedrus, 259A–259E

As soon as you awake, the familiar pressure is there: Should you write or not? Yes, no, maybe. You heave your body out of bed, prick your finger, and squeeze a drop of blood onto the glucose meter. You shoot insulin into your stomach, eat, go for a walk. You concentrate on your feet touching the ground, on the blue stretch of sky, the roar of crashing waves, the pungent odor of guano. You listen to the environment as Don Juan urged Castaneda to do. Searching for analogies to your budding ideas, you scan cypress trees with twisted trunks, a flock of pelicans flying low over the water, breakers shooting up the cliff walls like geysers.

—Gloria Anzaldúa, Light in the Dark/Luz en lo Oscuro

The song of the cicadas murmured through the streets of Bloomington, Indiana in the summer of 2004. After 17 years hibernating underground, the creatures extolled in Plato’s ode to rhetoric, madness, and love trumpeted their return with harmonious fervor. I vividly remember walking past the trees that lined the path from Ballantine Hall to the parking lot behind the Kinsey Institute, distracted by their rapturous hymn. The cicadas’ ubiquitous and ethereal orchestration crescendoed from a subtle whisper to an intense reverberation in a matter of steps. They animated the branches by giving them a pulse, enlivening the atmosphere with an energy that was somehow both electrifying and soothing. The hum from the trees was nothing short of overwhelming, imparting the feeling that at any moment they might conspire to overtake the walkway and whoever happened to be occupying it. Though invisible, they loomed large, effortlessly altering the scene with their euphoric chorus.

In ancient Greece cicadas represented spiritual ecstasy, rebirth, and immortality. Plato invokes the image of the cicadas in the Phaedrus to symbolize both restraint and honor, narratively crafting a link between personal control and dignity. Plato’s protagonist Socrates tells his companion, the book’s namesake Phaedrus, that they must resist the song of the cicadas, not succumbing to laziness, but practicing restraint against the pleasure-inducing cadence of the insects. Those familiar with the text know that Socrates is obsessing over his libido more than he is lauding some bugs in a plane tree. The storied philosopher reels in his desires for the titillating youthfulness of Phaedrus as he advocates for a disciplining of the passions and the virtue to be cultivated as a result. Socrates hopes that the cicadas will relay to the Muses his moderation and chaste disposition, and that he will be rewarded by Erato, the muse of love, and Calliope, the muse of rhetorical eloquence. Desires constantly encroach on Socrates, and he reproaches these temptations with overt gestures of self-control.

The relationship between duty and pleasure, what scholars frequently denote as hedonics, is a recurring theme in this book, which is dedicated to the manifestation and circulation of diabetes rhetoric. The tension between earthly desire and the platitudes of well-being is one I learned firsthand when I was diagnosed with type 1 diabetes the same summer the cicadas were resurrected in southern Indiana. Just a few weeks after defending my dissertation (a study about the relationship between blood and politics no less), the droning from the cicadas continued to stir as I was hospitalized suddenly after lower-back pain left me unable to sit, stand, or lay down comfortably. The pain was unlike anything I had experienced up to that point in my life and it still haunts me when I have the slightest backache. Because I was unaware that I had onset diabetes, my blood sugar was unregulated, inciting a condition known as ketoacidosis. In short, my kidneys had begun shutting down. I was immediately admitted to the ICU and spent a dizzying 48 hours immersing myself in a new language, a new routine, and a new way of life.

There were plenty of signs that trouble was on the horizon in the weeks leading up to my hospitalization, but they were not yet intelligible as something that might signify disease, illness, or however we want to classify diabetes in the medical order of things.1 For starters, I suffered perpetual exhaustion. Having just finished a dissertation, landed a job, and started the emotionally taxing task of finding a new home in a distant city while saying good-bye to my grad school kin, including my partner of just over a year at the time, I wrote off the fatigue as a by-product of stress. I was also terribly moody. Although I am a reliably easygoing person, I found myself regularly irritated. The hormonal changes that accompanied diabetes’s awakening left me undone, conjuring emotions that generally remained dormant in otherwise mundane situations. I had also lost a good bit of weight, but I tended to exercise frequently and was conscious of the scale, so again I attributed the weight loss to stress. When the doctors told me that I weighed a mere 120 pounds as a 5-foot,10-inch-tall man approaching age thirty, I was taken aback. The Greek word for diabetes translates to “siphon,” and the disease was living up to its etymological signifier.

The weeks and months that followed diagnosis were accompanied by a steep learning curve about diabetes care, but also a newly found appreciation for gauging my body’s response to fluctuating circumstances. Like all people with diabetes, I learned how to count carbohydrates, test my blood sugar, and administer shots. The finger pricks and shots were especially confounding, as I had lived for years with a pronounced phobia of needles. So strong was this aversion that I refused local anesthetics at the dentist’s office before having my teeth drilled for fillings. One of the nurses working with me early in my diagnosis quipped, “A diabetic who doesn’t like needles—how’s that working out for you?” Of all the medical conditions that I could have landed, this one seemed decidedly cruel, as if I was the butt of some cosmic joke. Clearly, the cicadas had delivered bad news to the wrong muse.

There were other complications that I could not foresee. Early on, my pancreas was still producing trace amounts of insulin (a normal phenomenon for those with type 1 diabetes) and when it interacted with the insulin I was manually injecting, it caused me to have unusual balance problems. I remember on one job interview shortly after diagnosis having a difficult time focusing on a senior scholar’s face as she posed a question. Although I was supposed to be answering her inquiries thoughtfully, I recall struggling to maintain composure and not embarrass myself during a dizzy spell. Driving and public speaking both became precarious endeavors because any mild change in heart rate or nerves left me unsure of whether my sugars were spiking or dropping rapidly. A friend from graduate school warned my partner to monitor me for depression, knowing that the first year after being diagnosed with a disease, chronic or otherwise, can leave a person despondent. I never pursued treatment or clarity about depression, worrying that any trace of flexibility in my concept of self would suggest that I was unable to contend with the multitude of changes I was juggling. Still, that first year I slept more than was normal, I lost time in ways I never had, and I became preoccupied with the life-altering ailments that awaited me. Assurances that “there are worse diseases you could have” or “things aren’t like they used to be” only made matters worse. In the years prior to the Affordable Care Act, I also worried that formal recognition of depression might be used against me in future health insurance matters. I grappled with the fallout of the diagnosis for years, consuming as much information as I could about cures (and some scientist is always curing some poor mouse of something), technological innovations, and the prospects of a long and healthy life.

But what caught me most off guard in those first months were the disturbing ways people in every realm of my life, from close friends to complete strangers, communicated about diabetes. Even the most well-intentioned conversations about diabetes quickly devolved into recitations about the need to “take care” of myself, a variation of a conventional narrative about personal responsibility and hard work. The number of people who told me stories about relatives who had diabetes, always in the past tense, was legion. On airplanes, in restaurants, during office hours, and at the gym (!) people implored me to be attentive to my body. Although I rarely engaged with those who attempted to discipline what I ate, what some people with diabetes call “hand slapping,” I commonly heard about death, folks who went blind from sugar irregularities, and the trope of the irresponsible diabetic who threw to the wind any thought of deliberate management. Sometimes the subjects of these cautionary tales were older men who had lost a foot to diabetes. At other times they were teenagers who died while in high school. One well-meaning relative told me the story of an acquaintance who had gone blind before dying from diabetes-related complications. Noticing the look of dismay on my face, she quickly added, “He was a crack addict too, though.” Of course, these stories of loss are generally heart-wrenching for the people sharing them. They disclose their experiences in the hopes that my loved ones and me might avoid the pain they endured and the misfortunes they witnessed. Still, it is little wonder that depression hits hard in the first year after diagnosis. On the one hand, people with diabetes are told their disease is not so bad; on the other hand, it is conveyed repeatedly as fatal. Deciphering which messages are pertinent to the immediacy of one’s livelihood can be a daunting undertaking when attempting to stay well.

Along with these dispiriting exchanges I was fast learning that vigilance did not always produce the results that I presumed and most certainly did not ensure the consistency narrativized about diabetes by others. I’m about as predictable as a human being can be. And yet, repetitive practices did not engender the effects typically described in medical literature. Early in my diagnosis I discovered that the same routine could produce glucose readings that were 100–150 points apart.2 I found that diabetes management is not merely about counting carbohydrates and administering insulin but is complicated by factors such as a lack of sleep, stress, exercise, caffeine, and a host of idiosyncratic circumstances. As Annemarie Mol notes, in the logic of diabetes care, “no variable is ever fixed.”3 People with diabetes can mind these variations, but the plasticity of the disease is readily glossed over by those who have rigid predispositions about its effects. Even worse, these personal complexities can be dismissed as merely anecdotal.4

The inconsistent outcomes that emerged from my daily activities stood in sharp contrast to the facts I was cultivating about diabetes. Methodical patterns were supposed to produce steady results. When that did not happen, I found myself internalizing feelings of shame for not having an appropriate amount of self-control. But, even more significant, I realized that while I was suffering a degree of mortification about my increasingly unchecked numbers, I also had the sneaking suspicion that this narrative about a lack of personal restraint would inevitably be used to blame me for my own demise. I mean, how many of you have attended a funeral where someone uttered the words, “he just didn’t take care of himself.” I’ve been to more than a few. Couple that with the fact that I have never been averse to sin and the recipe for scapegoating was ripe. I could just picture the bereaved whispering at my wake, “You know how much fast food he ate, don’t you?” “If Facebook is any indication, he always seemed to be drinking with friends.” “He was diagnosed the day after eating at a Cheesecake Factory, what does that tell you?” It is the casualness of dismissal that haunts me most when thinking about diabetes rhetoric, the assumption that the care of the self is easily executed, even as nuanced understandings about the contours of “management” are elided. This paradigm is at best wickedly deceptive and at worst callously malicious—just “take care of yourself” and everything else will fall into place. I find this discourse resoundingly dubious because lurking just below the surface is an acknowledgment that control is achievable only after bracketing some of the most byzantine factors related to healthy living—the sociality of eating, the high cost of fresh food, the dark side of well-being regimens, and the mammoth and impenetrable nature of the healthcare system.5 The almost compulsive urge to guide people’s behavior reveals that the constructed nature of “health” can be just as diabolical as any disease.6

And I’ve got type 1 diabetes—the kind that supposedly lives free of blame because it is technically an autoimmune disease and not attributed to diet or “lifestyle” choices. People with type 2 diabetes are damned constantly by moralizers who insist their condition is one of their own making. It is regularly assumed that people with type 2 diabetes ate too much, exercised too little, and ultimately initiated their own downfall. Although this is sometimes true, it is an oversimplification of a dynamic chronic condition that is best addressed free of persecutory accusations. Even among some type 1 communities there is a desire to rename one of the two diseases and do away with the guilt by association that accompanies such noxious public judgments. If only the language that constitutes diabetes could be made more transparent, the thinking goes, then certainly we could escape disparaging glares and indelicate remarks, not to mention make medical strides to cure both diseases.

This book argues against such thinking, contending that the symbol system guiding diabetes rhetoric is, to borrow a phrase from Paula Treichler, marked by a crisis of signification.7 Disparate visions of diabetes and its management circulate unceasingly and inharmoniously in public culture, contributing to a confusion, if not opaque mystification, about the disease. Depending on the source, diabetes might be imagined as an “epidemic” that necessitates government interference and multilevel task forces. For others, it is not so much a biopolitical question of state regulation, but the failure of individuals to exercise self-discipline. In some outlets, diabetes is positioned as thoughtlessly managed by swallowing a pill or programming a pump. In still other locations the disease is conceived as a dire state-of-being, a slow death that imperceptibly foments bodily decay. Diabetes is a banal and gradual disease, but couched recurrently in metaphors stressing war, natural disaster, addiction, and criminality. It is sometimes heralded as a product of nature, sometimes nurture, and sometimes both. In the medical literature, diabetes’s catalyst is itself unknown, attributed to everything from viruses to gut bacteria to hormones to environmental toxins to some combination thereof.8 Healthcare workers extol the promise of new innovations, such as insulin pumps, but also expend much energy worrying that people will attach such devices without reflection and abandon their duties of self-care. These contradictions occlude the fact that the paths to making a better life with diabetes are as diverse as the people who live with it.

This text does not strive to solve the inherent contradictions that organize diabetes’s strange public life. Rather, I look to the trope of management as an instance of condensation, in the rhetorical sense, that helps to smooth over the discrepancies that mark the ways diabetes is made intelligible.9 Put another way, management operates as a shorthand for multiple rhetorics that deal with sociality, relationality, food consumption, institutional support, ideologies of health, medical directives, and, perhaps most important, moral worth. Entering the labyrinth of diabetes management reveals its contours to be more serpentine than transparent, riddled with discrepant messages and incommensurable impulses. Giving attention to diabetes’s puzzling incoherencies can trouble visions of self-sovereign subjects endowed with limitless personal agency and elucidate the cultural forces that help to structure life with the disease. 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. The forces shaping diabetes are polyvalent, customarily progressive and conservative simultaneously, sanctioning and restricting cultural inclinations about its enigmatic contours.10

Managing Diabetes attends to commonplace figurations of management to discern how routine meaning-making practices enliven the possibilities for judgment about diabetes outside a narrowly conceived medical model. Focusing on clinical presumptions of diabetes tends to reproduce rote notions of restraint, discipline, and mortification. However, such an emphasis does little to address equally significant incarnations of the disease 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,” August 16, 2015. Spencer Platt/Getty Images News/Getty Images.

Type 2 diabetes, on the other hand, is often diagnosed in people who are older and sometimes overweight. Whereas type 1 is characterized by a lack of insulin, people with type 2 either do not produce enough insulin or their cells lose sensitivity to insulin and ignore it.19 This form of diabetes is typically controlled through oral medication, although type 2 can also necessitate insulin if the pancreas disengages fully from its normal functions. Type 2 diabetes constitutes about 90 percent of all cases and is most lethal because it can remain undetected for years. Once associated with wealth and whiteness, type 2 diabetes has evolved in disparaging fashion to be affiliated with minority and low-income communities. A metonymic correlation is frequently crafted in media outlets among race, consumption, and the moral failings of not rigorously maintaining the body. A widely circulated photo of an African American woman whose head is cropped out of the frame and who is utilizing a cane as she walks past a McDonald’s points to the problematic representations that are imparted about type 2 diabetes. The line of sugary drinks and high-calorie meals metaphorically dissolves into the woman’s body, drawing a straight line between consumption, responsibility, and disability. And while the products are on full display, the woman herself is dehumanized: She literally has no head. As such, all that audiences can presume to know about her identity is made in association with the visual referents around her. When coupled with the headline, “Diabetes Could ‘Bankrupt the NHS’ After 60% Rise in Number of Diabetes Cases, Charity Warns,” this woman’s control is imagined to be out of bounds, affecting not simply her, but the body politic as a whole.

Culturally then, these two forms of diabetes are distinct because of the blame assigned to people with type 2.20 As noted earlier, narratives commonly adopt an accusatory tone, contending that if a person simply would have eaten less, managed their diet, or exercised more, they would not be struggling physically and emotionally. Whereas people with type 1 diabetes have an onset period of several weeks, signaling the decreased capacity of the pancreas, type 2 develops at a glacial pace, leaving most cases undetected for years. As a result, in the cultural schema of diabetes, people with type 1 are widely cast as victims, while those with type 2 are positioned as deserving of this outcome because of their overconsumption. Although people with type 2 sometimes have more control over their body, it is an oversimplification to assert that there is a single causal agent of diabetes or that it can be easily remedied. It is also a mistake to assert that all people who are classified as overweight will develop diabetes, as the vast majority of people, including those labeled obese, never will.21 Chapter 2 deals explicitly with this stratification system, examining the ways shame shapes surveillance and limits productive intervention strategies for addressing diabetes rates.

Diabetes’s denominations are not wholly structured around the stark binary between types 1 and 2. As scientific understandings of the endocrine system have evolved, so too has the volatile and fluid role of glucose in the body. Many people, for example, live with latent autoimmune diabetes in adults (LADA), which is sometimes referred to as type 1.5 diabetes. In LADA, the presence of antibodies negatively engaging the body exists, as it does with type 1, but the onset period is slower. The pancreas is still producing some insulin, but injections are customarily needed within six years. Still other people live with forms of monogenic diabetes, also known as mature onset diabetes of the young (MODY). This rendition of diabetes is typically diagnosed in people younger than 25 who experience (often undetectable) hyperglycemia that never progresses toward ketoacidosis. Researchers have also begun studying the connection between Alzheimer’s disease and insulin resistance, sometimes referring to it as “type 3” diabetes. Scientists theorize that insulin deficiency to the brain causes neurodegeneration that catalyzes Alzheimer’s. The relationship between Alzheimer’s and diabetes has been circulating in medical circles for at least a decade and could help to advance knowledge about the biochemical exchanges between diabetes and various parts of the body. From a cultural perspective, it is imperative that we monitor the rhetorical development of “type 3” diabetes and its potential affinities with type 2. It is entirely possible that blame might be foisted on to people with Alzheimer’s for their diagnosis, as it has for other variants of diabetes. For better or for worse, new forms of knowledge are always articulated to previous epistemological tendencies that rest outside the confines of medical taxonomies.

Finally, although gestational diabetes receives the least amount of attention in this text, it certainly deserves mention. The disciplining that occurs during pregnancy, especially for women with any trace of sugar irregularity, promulgates significant parallels with rhetorics of excess, shame, and projections of the productive body. The American Diabetes Association reports that doctors do not know why some women develop gestational diabetes and others do not. Scientists hypothesize that hormones produced by the placenta spark insulin resistance, initiating hyperglycemia in expectant mothers. The condition tends to be temporary and does not stay with women after they give birth. Gestational diabetes can create problems for the fetus (including a higher risk for type 2 diabetes later in life) but is ordinarily treatable. Nonetheless, meaningful intersections can be found between diabetes and pregnancy: Pregnancy is perennially couched in terms related to personal responsibility and the role of the mother as a “protector” above all other things. Likewise, women’s bodies are monitored during pregnancy and they are judged when they eat the “wrong” foods, drink any trace of alcohol, or consume caffeine. The body is rigorously surveyed, not necessarily by the mother herself, but by loved ones, acquaintances, and even strangers. Moralizers regularly police the bodies of pregnant women and people with diabetes, and combining them produces an ominous form of public supervision.

The disciplinary tendencies that accompany diabetes highlight the degree to which management has been couched in and grounded by neoliberal conceptions of agentic subjects and their relationship to biopolitical performances of governmentality. That is, undergirding the logic of diabetes care regimens, there is an assumption of a person who has the ability to make particular, if undefined, choices in order to achieve an abstract goal of control. These impressions of diabetes have been given much attention in studies that focus on the clinic, a site that not only has generated an impressive amount of medical data, but one that has nurtured diabetes’s public character and the lexicon we tend to adopt when discussing it. Iterations of management as a public disease do not rest apart from those that are situated in the microcosm of the clinic. Rather, they are mutually informative, offering insights into the development of public narratives about diabetes and its disparate forms.

Management: A Paradigm of Personal Agency

In the early twentieth century, chronic medical conditions killed approximately one-fifth of the US population.22 People were more likely to die from pneumonia, tuberculosis, or diarrhea than they were from diseases such as diabetes. Thanks to advances in science and medicine, many of the environmental and infectious agents that once plagued us have been eradicated, helping to extend the human life span by nearly three decades. As a result, chronic conditions now claim the lives of nearly 80 percent of the population.23 This dramatic transformation in public heath necessitated a vocabulary for contending with the everyday consequences of chronic diseases, and there is no paradigm more ubiquitous than that of “management.” Turn on the television and you’re bound to see commercials for COPD medications that spotlight management as a central concern.24 Anti-obesity campaigns continually stress exercise regimens and dietary management to maintain wellness.25 Management is invoked in public rhetorics dealing with depression, diabetes, epilepsy, asthma, fibromyalgia, coronary artery disease, hemophilia, chronic fatigue syndrome, and erectile dysfunction.26 Even diseases that were once classified as exclusively infectious, such as HIV, are now regarded as chronic and manageable.27

The amalgamation of conditions outlined above illustrates the fungible nature of management and its plasticity in public rhetorics about health and medicine. In each instance, the framework of management endows patients as recipients of technological knowledge and medical aptitude. Medical epistemologies of the past envisioned the body as a machine in need of repair and bestowed the locus of expertise to physicians who could rehabilitate it. Today’s conceptions of management, conversely, assign direct agency to people living with disease.28 Such regimens permit those who know their bodies best to steer quotidian treatments and enhance their quality of life, as long as they have access to lifesaving resources to stay well. Zoltan Majdik and Carrie Ann Platt argue that management fosters “a perspective that connects potential loci of action and choice to domains lay audiences feel comfortable with and competent in.”29 The expertise imparted to individuals, however, can create equally daunting problems. Many scholars have warned that management incites an obligation to conform to the imperatives of public health mandates and those who craft them.30 Patients are increasingly responsible for adopting the knowledge furnished by medical and state authorities, performatively rehearsing scripts that appear self-evident in their execution and effect.

Blurring the boundaries of medical aptitude between patient and physician suggests management is not easily studied using only biopolitical theories of governmentality or neoliberal projections of personal agency, even though many works engage one or both of these to investigate management’s conceptual scope. Michel Foucault’s works on discipline and surveillance are certainly useful for contemplating the reach of medical norms, but so too are his notions of resistance, technologies of the self, and the development of moral personhood. Attempting to determine where the clinic door ends and the currents of everyday life begin is a knot that is not easily untangled. William Donnelly’s call for “clinical arts” and Arthur Kleinman’s push for “meaning-centered” notions of care both reflect the ongoing conceptual messiness of communicating about illness by acknowledging the reach of medicine into quotidian practices without relinquishing the ways people appropriate, articulate, nuance, and omit medical directives from daily routines.31 In a similar vein, Peter Conrad has famously noted the ascendance of medicalization, a process that seeks to impart increased individual control over disparate conditions through technological and pharmaceutical intervention.32 Even as diabetes is assuredly a medical reality, management has followed the path of medicalization, becoming a catchall for diffuse bodily treatments and maintenance. Navigating the fictive extremes of structurally determined public health mandates on the one hand, and patients with unfettered agency to make “the correct” choices on the other, requires a focus on the meaning-making practices of people with diabetes and the unexpected, sometimes convoluted, ways they process ideas associated with management. Numerous scholars have attempted to gauge these formations by probing one particularly rich site: the clinic.

Guided by questions of structure and agency, researchers have focused on the scene of the clinic and the interactivity between clinicians and patients to ascertain management’s benefits and deficiencies. These literatures, which draw provocative conclusions, tend to emphasize the operative force of the clinic in the lives of people with diabetes. Mary Specker Stone, for instance, scrutinized patient empowerment strategies by ruminating on the ways the body of a person with diabetes shifts from an active agent to a passive part of the medical scene, in the process actualizing directives that undermine patient agency.33 Echoing Foucault, she finds that those with diabetes “carry a bit of the clinic” wherever they go.34 Anthropologist Steve Ferzacca found that both physicians and patients embrace mutual commitments to abstract ideals such as discipline and health, but observed that patients articulated these shared notions to unconventional and idiosyncratic regimens that were rarely effective.35 Mol notes the contradictions that stem from clinical encounters, arguing that physicians must balance a delicate situation, providing spaces for sadness and reflection, but also encouraging patients by emphasizing the power of modern treatments to foster a healthy life.36 Still other scholars have found that ethnic differences have the effect of fortifying dominant medical models by isolating anything not intelligible to doctors as a matter of cultural, and not institutional, shortcomings.37 The focus on the clinic has produced much needed research, but it comes at the risk of cementing conceptions of health and well-being in institutional locations at the expense of enclaves where knowledge is produced and circulated in equal measure.38 Of course, there is good reason for this. The clinic provides a judicious and workable realm of study, where conclusions can be drawn with some degree of verifiable evidence and data that can be replicated.

Although medical advancements have enabled patients to assert more control over their conditions, providing them with strategies for maintaining wellness, the ways patient agency has been popularly imagined evokes its own anomalies. Lora Arduser has detailed the necessity to disarticulate patient agency from problematic frames such as “compliance” and move toward relationships that speak to the nuances of self-care.39 Patients can be enabled by agentic practices, but such strategies can produce as many limitations as they do possibilities for being healthy. For instance, the moving target of perfect control for people with diabetes, represented by the idealized glucose reading of 90, illustrates the recalcitrance of focusing exclusively on a narrowed goal for success. The injection of insulin is necessary for the stabilization of blood sugar levels. But, the substance also triggers experiences that are regarded as unmanageable. In their study of the semiotics of the term hypoglycemia, Mol and John Law captured the tensions that exist between methods of control with insulin and the ways people make sense of diabetes. Paradoxically, hypoglycemia is something that transpires because of control, not in spite of it.40 Rigorous regulation offers the prospects of longevity, but it comes at the cost of feeling ceaselessly out of sorts if hypoglycemia persists. It can also instigate neurological problems if sugar is regularly denied to the brain. Hypoglycemia incites harm, even as taking insulin is customarily regarded as promoting stability in blood sugar. Many insulin-dependent people can recall instances when they underdosed for the sake of not initiating hypoglycemia in a public setting, perhaps when giving a presentation or driving long distances on the highway. The contingent character of disease necessarily means that compromising and sometimes counterintuitive decisions need to be made. As David Morris reflects, disease and illness “always contain deeply practical imperatives: Something must be done, often quickly and with imperfect knowledge.”41 Translating medical ideals into lived praxis is not easily accomplished, and failures tend to be attributed to individuals and not the internal contradictions of management.

The moral imperative to conform to health strategies and remain robust is usually strong among those managing chronic conditions, even when life’s entanglements are unrecognized by people making judgments about such efforts. As a nurse practitioner who specializes in diabetes once told me, the hardest part of her job was convincing patients that having atypical blood sugars did not make them bad people. Management’s individuation can generate feelings of isolation and helplessness just as much as empowerment and control.42 When people with diabetes do not conform to numerical averages and social models of productivity, they are frequently left devastated by the results, particularly if blood sugar averages are persistently erratic. Control becomes closely aligned with positive values, “described as a marker of virtue, will, maturity, and autonomy; declining to control it indicated laziness, gluttony, or, simply, ignorance.”43 This resonates with the observations of disability scholars who find that any digression from the exalted norms of bodily productivity in a postindustrial society will lead to charges of dysfunction.44 The National Institute of Mental Health (NIMH) reports that people with diabetes are twice as likely to experience depression because of management fatigue and feelings of worthlessness.45 The NIMH conveys that stigma is strong for those who are perceived by themselves and others as not managing the body properly, evoking both physical and emotional turmoil. How individuals should care for themselves is well known among people with diabetes, but achieving health ideals can be more daunting than is sometimes imagined. Mol reminds us that what constitutes “improvement” in diabetes care is not always transparent. “Traditionally,” she argues, “health was the ultimate goal of health care. These days it rarely is. In chronic diseases health is beyond reach, and it has been replaced by the ideal of a ‘good life.’ But what counts as a ‘good life’ is neither clear nor fixed.”46 The individuation of disease and the moral implications engendered by management continually, if inadvertently, vacate the adverse aspects of disease in idiosyncratic instances.

Scrutinizing management heralds its own internal tension: We cannot confidently assert that management rhetorics deterministically structure life for people with diabetes, but neither can we assume that people with diabetes have complete agency over their disease at all times. On the one hand, those extolling the virtues of management habitually, if unintentionally, contend that people are granted “equal status as citizens,” overlooking structural disparities lurking in the laudable goals of healthy living.47 On the other hand, institutional directives do not perform a necessitarianism that guides every action of the patient. Despite stigma, shame, and the debilitating aspects of management, people find ways to make do and—consciously or not—evade overly prescriptive demands. This negotiation presents an important balance, especially when some studies have found that over-managing diabetes can be harmful. Diabetes requires a strong sense of prudence. It demands people to decipher the contours of disease by applying broad principles to specific situations. Such common sense is not easily developed and often requires years of arbitration between medical necessity and lived reality. As another health educator imparted to me when I was first diagnosed, people with diabetes must be cautious about the advice given by others—everyone thinks they know how to manage diabetes. A strong sense of what works for your body, and what does not, becomes imperative for survival. A prudential approach to care avoids generalizations that celebrate a machinist body or that reflect the worst impulses of the scientific method.

This attention to judgment, which demands that patients refine fundamental principles for situated action, is also instructive in that it suggests the varied nature of diabetes and allows us to resist easy conclusions about both etiology and management regimens. People with diabetes have discrepant experiences with the condition, and those lived realities foreground multiplicitous aspects of disease. Management always has the potential to slide into conceptual singularity. But a narrowed and ill-conceived conception of management, often adopted by people not in the medical sphere, can be deleterious when it is unreflectively applied across bodies and situations. Take something as simple as the stark classification system between types 1 and 2 diabetes. Commonsense renderings of the disease might tell us that people with type 1 developed the condition as children and type 2 later in life. And sometimes this is the case. Yet this assumption can be equally problematic. On at least one occasion I have had to convince a physician that I did not live with type 2 diabetes. The fact that I was diagnosed later in life led him to conclude that I had type 2 and that I might not need insulin. Age became a reductive marker for my disease, rather than the mysterious catalyst that actually triggered its onset. The meaning-making process underwriting management sometimes requires patients to revisit and rehearse the most basic aspects of living with a chronic disease. Those with diabetes must possess a surprising degree of social sagacity in order to stay well. Presumed understandings of diabetes can produce as many obstacles to care as they do opportunities for identification and, in the process, exacerbate the schism between public interpretations of management and the prudent skills honed by people with the condition.

Before continuing, it should be noted that the focus on the clinic also suggests, and recurrently obscures, the economic imperatives that accompany diabetes. Just as breast cancer screenings sought to save multinational corporations millions, so too have patient-educational endeavors that deal explicitly with diabetes.48 Writing in the late 1990s, Stone observed that many HMOs and PPOs incentivized patient “empowerment” because prevention was a cost saver. Like breast cancer programs, empowerment campaigns rarely address the root causes of diabetes, be it systemic poverty, environmental hazards, or a lack of food choices. Not surprisingly, these corporate strategies have rarely translated into economic advantages for people with diabetes. Peter Conrad and Rochelle Kern rightfully observe that “very few of our resources are invested in ‘health care’—that is, in prevention of disease and illness. Yet, with the decrease in infectious disease and the subsequent increase in chronic disease, prevention is becoming ever more important to our nation’s overall health and would probably prove more cost effective-than [reactionary] ‘medical care.’”49 Management here is conceptually offensive and defensive, acting as a driving force for national budgets and personal health, respectively. Although the ACA has given more US citizens access to health care than ever before, it still falls short of universal coverage that would benefit all people with chronic conditions. As of this writing, there is no guarantee that the law will be left intact at all.

Economic considerations present yet another way diabetes might be made intelligible by emphasizing the high cost of being ill and the systemic disadvantages it perpetuates, but seldom do these themes find a home in public culture. People with type 1 diabetes face more economic hardship than those without because of the lifelong consequences of a condition that often begins in childhood. Monthly costs vary depending on the kind of diabetes one has and its severity, but some estimates put expenses at up to $1,000 a month.50 Along with the burden of medical costs, those with the disease have lower lifetime earnings and fewer job prospects than those without it. People with type 1 earn approximately $160,000 less in their lifetimes than those without the disease because they are less likely to finish high school, attend college, or land a good job. Of course, college might not be possible because of financial difficulty from having a chronic condition in a country that lacks an adequate single-payer system. The New York Times reports, “One driving force … may be the difficulty in balancing school or job demands with the management of a chronic disease. Employers may also be less likely to hire someone with diabetes because they fear they will take more sick days or be less productive or more of an insurance burden than other workers.”51 These structural concerns do not indicate all is lost, but they do imply that much work remains to ensure that people are financially, legally, and medically protected from such harms.

The remainder of this chapter looks beyond the clinic, to cultural mediations of diabetes management. In some ways, I have been operating outside the walls of the clinic for much of this chapter, pointing to interpersonal interactions, economic longevity, and prudent approaches to care. Even a familiar word like “diabetic” hints at the sociality of disease, literally joining personhood and illness in its utterance. The increasingly common “people with diabetes,” conversely, gives presence to the human element of disease, subtly resituating notions of power, subjectivity, and agency. Even in this more progressive representation of disease, it is important to remember that illnesses are not uniform across bodies, and, as queer scholarship reminds us, normativities are not always based on actually normative practices.52 Just as monogamy is the normative ideal and not always the norm, decrees about how diabetes should be managed might stand in contradistinction to the lived realities of people with diabetes. Anselm Strauss has observed that an abundance of information “generally ignores a basic aspect of chronic illness—how to deal with such ailments in terms that are social—not simply medical.”53 Conrad echoes these sentiments when he argues, “it has long been observed that the clinical gaze or the clinical medical model focuses on the individual rather than the social context.”54 Considerations of locality, tradition, and configurations of management can revise suppositions about patient compliance—a loaded phrase if ever there was one—and bestow focus on power structures, norms, and the resources available to make informed decisions. Diabetes is located in a “complex field of power” and its materialization in specific contexts affects how it is recognized among publics.55 The ways diabetes is made intelligible—as epidemic, as fatal, as the new technological frontier—divulges attitudes about everything from personal directives to institutional interventions that execute disease management.

I want to reiterate that I am not arguing against the medical management of diabetes. Rather, I want management to be engaged as a dense and politically fraught concept that is not only clinical, but cultural. Not simply individual, but social. Not a singular expression, but a series of diverse conventions. If it is true, as thinkers such as Emily Martin attest, that culture and medicine are always already intertwined, then it would prove expedient to expand our purview of management’s materializations.56 I do so in what follows by emphasizing various instantiations of diabetes in the public sphere, glancing at sites where meaning-making happens outside of a medical context, even if that apparatus is always informing the constitution of disease. In the tradition of cultural studies, management is imagined here as a key word that enlivens and makes present one element of Raymond Williams’s ephemeral “structure of feeling” for people living with diabetes.57 I survey an array of artifacts to ascertain management’s complex cultural character and offer texture to staid medical renderings of diabetes.

Medical Humanities and the Art of Management

The epigraphs to this chapter share a number of commonalities that speak to the embodied nature of knowledge production and the performative repertoires that transform abstractions into lived practices. Each of them depicts a peripatetic actor, one who walks to make the strange familiar. Phaedrus is one of the few dialogues in Plato’s canon where his heroine leaves the walls of Athens, signaling the unusual nature of the text and metaphorically encapsulating the dangers of rhetoric’s promiscuous circulation outside the bounds of discreet contexts. Anzaldúa is likewise on an excursion, consumed by the beauty and stench of nature, hoping her stroll will draw inspiration for the very exercise Plato suspiciously castigates. Socrates scans the plane trees for cicadas; Anzaldúa the cypress trees that exist harmoniously with the pelicans. They are both preoccupied with invention and spiritual creativity, a yearning for revelations that spring from engagements with the environment, an interlocutor, and oneself. They achieve philosophical clarity through methodological messiness. Plato seeks to rethink the postulates of rhetoric and love; Anzaldúa narrates a morning in her life to craft a poetics of illness in all its inglorious forms.

Plato and Anzaldúa offer alternative paths for contemplating the process of knowledge creation, be it about disease or philosophy or love, and the fruitful rewards of digressing from socially sanctified practices. Their musings invite us to deliberate anew about how diabetes’s public persona might be actualized in ways not often attended to in public culture. This section aspires to perform such labor by joining in the chorus of works that investigate, queer, and complicate traditional maps of health and medicine. Once left to the auspices of the social sciences, studies of health and medicine have vaulted into the center of humanistic research. As Anzaldúa’s quote conveys, humanists are not new to such endeavors and have long been captivated by the bewildering nature of the body. Luminaries such as Virginia Woolf, Susan Sontag, Audre Lorde, and Eve Kosofsky Sedgwick are among the many thinkers who have sought to trace the amorphous silhouettes of disease. Today these works are taught globally to students in courses focused on health and medicine, especially in the United States, where medical humanities programs have exploded. The number of health humanities programs for undergraduates has quadrupled since 2000, providing opportunities to study the scope and influence of medicine in disparate realms of life.58 This popularity stems in part from the enhanced focus on interdisciplinarity in higher education. So-called cluster hires, for example, have been implemented by administrators to focus research programs and brand their institutions with specializations that deliver grant money. These clusters often incorporate faculty from medical schools and encourage topics that revolve around health and wellness. When I was in residence at the University of Iowa, for example, a cluster hire was approved by the provost to explore the subject of obesity, and diabetes research was a key element of that work. These programs point to the economic imperatives of the modern university, which were crystallized during the financial crisis of the late aughts. As Belinda Jack has succinctly argued, “There’s money in medicine and not so much in the humanities.”59 On a more optimistic note, there is also no denying that there has long existed a dynamic relationship among pedagogy, scholarship, and advocacy in the humanistic investigation of health and medicine. After all, what would AIDS look like without activism? Indeed, what would queer theory look like without studies of HIV/AIDS? What would reproductive rights be without feminist critiques of science? How remiss would the designation of “mental health” be if reduced to definitions outlined by the Diagnostic and Statistical Manual of Mental Disorders (DSM) and without the correctives found in art, music, and literature? The humanities elucidate the fixations and deficiencies of clinical perspectives and highlight the generative possibilities of worldmaking among those living with diabetes. The objects of study and methodologies pertinent to the humanities permit a robust examination of the political climates in which knowledge is conceived.60 The power relations that privilege some bodies over others might give prominence to questions of disability, race, gender, and sexuality that are occasionally lost in objective renditions of science, even as they are fundamental to the inquiries being performed.

Management, then, is not best engaged as a purely medical heuristic. Rather, we might treat management as an intrinsically rhetorical construct that is best studied by spotlighting ecologies of context, the negotiation of meaning-making across publics, and the mystifying complications that escort the circulation and reception of ideas about its functions. There is no shortage of scholarship, from the sciences to the humanities, illustrating that knowledge production is not an inherently impartial process but one underwritten by the realm of human affairs.61 Skeptics of scientific objectivity who are suspicious of nominal claims to neutrality have repeatedly dissected normative medical assumptions to discern how culture both enables and restricts interpretive schemas for assessing health expectations.62 The words used to describe “natural” phenomena matter. The contexts in which those words are used matter. The bodies putting those words into discourse matter. Critical heuristics that focus on the intricacies of meaning-making processes can yield valuable insights about health, identity, and power.

As a scholar who is indebted to the fields of cultural studies, feminism, and queer theory, I accord much consideration to the norms that guide the intelligibility of bodies, the stigma that marks people with disease as polluted or impure, and the symbolic possibilities for public activism. The inclination toward social change strikes me as particularly relevant to this project because diabetes is so rarely treated as an object or effect of political power structures. Privileging the voices and experiences of those who live with diabetes can offer matchless rejoinders to public scripts that overlook diabetes’s more unconventional, though no less critical, forms. For example, a posting on the widely utilized tudiabetes.com by a blogger who uses the alias “queer diabetic for universal healthcare” illustrates how meanings not typically foregrounded in the public sphere can subtly shift attitudes in productive fashion. Centralizing an intersection that I have not often come across, she asks: “how exactly are queerness and diabetes connected for you?” Her points are worth relaying in full, reproduced here as they are in the forum. She reports:

-im queer and diabetic. they both exist in me and make me who i am. the simple presence of queer diabetics makes them related.

-i have felt shame and pride at different times about being both queer and diabetic.

-i constantly have to come out as queer and diabetic. the process of coming out always reminds me of my otherness, my deviation from normal, which reminds me of unearned privilege (mine and others) and the subsequent inherent discrimination and oppression created in society. the need to come out also reminds me that (good) health and (hetero)sexuality are constantly presumed. and that is inherently homophobic, diabetaphobic, and ableist.

-im queer and i fight for queer liberation in the streets. but im afraid to get arrested and detained without sugar, insulin, test strips. shouldnt the queer liberation movement be flexible enough to make it safe for me to participate? shouldnt i still be able to be a “hardcore activist” without going into a coma?

-im diabetic and i want a cure, goddammit. would kid-friendly type 1 groups want me to join them in the search and fundraising if they knew about how i have sex? would they be willing to risk their benign-wholesome-white-family/friendly-we-didnt-do-anything-wrong image for my liberation? why not? their fear, my fear must be tied.

-what good is a cure if only rich folks with jobs and health insurance and money can afford it?

-what good is liberation if only some people are allowed to be free?

-what good does it do to “dismantle the police state” if the liberators police and judge our bodies, our medical decisions, our food choices, our worth (based on our ability)?

-i need my meds. i need health insurance. i need love. i need respect & acceptance for my full self.

Management here necessitates health care, medicine, and healthy food choices. But it also demands publics that are sensitive to privilege and marginalization, freedom from fear, mental wellness related to sexual acceptance, and the recognition of one’s personhood. The blogger’s list posits not simply an arduous subject position, but a queer positionality situated by norms of capitalism, white middle-class respectability politics, and the constant prospects of danger (both internal and external) to her body. 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.” Used by permission of Jen Jacobs (diabetesart.com).

The contrast between her paintings “Routine” and “Good Morning” challenge the oft-assumed assertions that self-care is transparently plotted. The work depicts a large blackboard (not a surprising choice given Jacobs’s occupation) with the word “Routine” written repeatedly over ten lines. The word is recurrently broken up when space runs out at the end of the chalkboard. The reiteration of the word “routine” boldly and appropriately mimics the management regimen it is meant to index. However, due to lack of space on the board, routine is also discrepant in its composition, unsettling the very idea of a direct approach to controlling blood sugar. Despite the lack of coherence suggested in the piece, the entirety of the word “routine” is centered in the middle of the blackboard four lines down. Periodically, it would seem, routine comes together. The creation’s purpose appears to convey that to have diabetes is both to perform routine and be caught in its accusational gaze. Management looms large even as one mulls over its simultaneous discontinuities and monotony.

Figure 1.3. Jen Jacobs, “Good Morning.” Used by permission of Jen Jacobs (diabetesart.com).

Conversely, her works “Good Morning” and “Every Time I Eat” present the dilemmas of management when the fantasy of habitual technique is disrupted. While “Routine” presents viewers with the idea of persistent, almost dreadful repetition, “Good Morning” probes the intricacies of diabetes management, framing it as a math problem with a preponderance of variables that must be analyzed before eating. Like “Routine,” this painting is conceptualized on a chalkboard that insinuates education, critical thinking, and calculation. The problem reads:

Starting the Day

Diana Betes wakes up at 6:30 a.m. with a Blood glucose (BG) of 60 ml/dl. She plans to have a cup of coffee with 4 oz. of milk on her ½ mile walk to work.

A) How many glucose tablets does Diana need to correct her BG level?

B) How many units of insulin does Diana need?

Alongside these words is a segmented table labeled, “Givens,” which includes information about her blood sugar targets, the number of carbs in milk and glucose tablets, and the amount of insulin needed to metabolize them. In contrast to “Routine,” which is circular despite its periodic breaks, “Good Morning” offers a range of contingencies, some of which will be familiar to observers and others of which may not. The concept of the “Dawn Phenomenon,” for example, will likely seem mysterious to many. The dawn effect, as it is also called, is a surge of glucose made naturally by the body in the early morning hours to provide energy for the day ahead. Below the extended math problem are two formulas for calculating how much insulin Diana must administer to herself.

The use of the blackboard in each of these implies a public that is being educated about the tribulations of diabetes. Like many artistic ventures, the work appears to be directed at a universal audience, encouraging patrons to deepen their understandings of the disease, even if it is done through identification with the fictitious Diana Betes and her quandaries. “Good Morning” is not as easily processed as “Routine,” as it calls upon viewers to evaluate myriad factors: time, space, consumption, caution, and calculation. Time is a noteworthy theme across Jacobs’s work, illustrating repeatedly that people with diabetes are persistently focused on the time of day, the times they need insulin, and the time they have left in this world. Diabetes is, after all, a chronic disease, structured around the gradations of the calendar and the gradualism of the clock. In this way, Jacobs’s work is astoundingly rhetorical—being concerned with the contingencies of situations as much as they are the universal qualities usually privileged in art.

Figure 1.4. Jen Jacobs, “Every Time I Eat.” Used by permission of Jen Jacobs (diabetesart.com).

Figure 1.5. Jen Jacobs, “Can You Eat That?” Used by permission of Jen Jacobs (diabetesart.com).

Being public is a captivating idea in Jacobs’s work, giving primacy to the ways diabetes is made relationally intelligible, not simply in the confines of one’s home or in the space of the clinic. Both “Can You Eat That?” and “Downtown” highlight the extremes of insulin use, one preoccupying itself with the prospects of hyperglycemia and the other with hypoglycemia. “Can You Eat That?” focuses on a singular object: a large sundae that shimmers on the canvas. Jacobs has noted that her work is sometimes satirical in its impulse. She incorporates humor to deal with the pressures of diabetes, as so many living with the disease do. This painting fits the bill, as any person with diabetes recognizes the absurd exchange this situation immediately invites. The ice cream has multiple layers—hot fudge, caramel, whipped topping, and the proverbial cherry on top. The glass holding the dessert is transparent, but crystalized, representing the very warning that is denoted in the painting’s name. The visual material might otherwise be mundane until one realizes that the title is a query directed at a person with diabetes. This is not mere decadence, but also a moment of judgment that is interpretively polysemous. The painting could be depicting an instance of disciplining the diabetic body. It could betoken resistance to other, wiser food choices. It could reveal anxieties shared among both actors in the interaction—the person posing the question who has no knowledge of what happens next if the person with diabetes elects to eat the ice cream and the burden of being surveyed for the interlocutor with diabetes. The work depicts a moral question as much as it does a medical one, an account that reflects the fleeting but ominous structures that organize the life of someone who is insulin-dependent.

Figure 1.6. Jen Jacobs, “Downtown.” Used by permission of Jen Jacobs (diabetesart.com), and the owner, Claude Piche.

“Downtown” is, to my mind, Jacobs’s most compelling painting if only because its abstraction reflects the difficulty of capturing the experience of hypoglycemia. Jacobs’s work concocts a memory of her blood sugar descending rapidly at a farmer’s market. Like Socrates and Anzaldúa, Jacobs is walking, performing the most ordinary of tasks in an otherwise unremarkable setting, when the hypoglycemia strikes. The feeling of dangerously low blood sugar is experienced differently among people and can have varying effects on the body. For some, hypoglycemia is disorienting. Others may become obstinate. Still others may become tired, weak, giddy, or despondent. Jacobs’s painting captures the disorientation created by hypoglycemia, noting the distortions, panic, and anxiety that can materialize if one is in public and others are unaware of the condition. Are you alone? Do you have food or drink that can amplify your blood sugar? How quickly are your levels dropping? The numbers on the board at the bottom left of the painting indicate a quick fall from mild hypoglycemia (the number 72 is low, but still relatively safe) to the number 31, which signifies a dangerous state that can render a person unconscious. The numerals visually slide off of the sign, literally hitting the floor, indicating what is to come if action is not taken immediately. We might expect that Jacobs is one of the figures in the painting (presumably the person next to the numbers) or the entire occurrence might be understood from her perspective. The scene and agent blur into one configuration, where the danger of low blood sugar is both internally and externally present. The shadows on the abstractions stretch in different directions, the buildings are distorted, and the lines discernably not straight. While there is food and drink all around her, confusion persists.

Jacobs’s art grants an opportunity to explore diabetes in ways not typically seen in academic literature.68 Each of these paintings is a snapshot of her life with diabetes that resides outside the realm of the clinic, shining a spotlight on the complications and contradictions of management, the boldness of proclamations about routine, and the nuances that must be addressed to truly apprehend and sympathize with her particular needs and problems. One composition relays the looming desire for sugary food and the self-monitoring it instigates. Another ponders the isolation of disease in the most public of settings. The artist’s visual narratives are themselves an important part of life with diabetes for, as Mol tells us, in “the logic of care exchanging stories is a moral activity in and of itself.”69 Jacobs calls attention to balance, temptation, desire, and discipline. The song of the cicadas could be the soundtrack to her gallery.

Chapter Preview

The remainder of this book explores a variety of case studies to provide an overview of diabetes’s public personifications. The archive of this volume purposefully works outside strict biomedical renderings of diabetes that limit the scope of how the condition is made intelligible, surveying artifacts as diverse as everyday speech and public health controversies, to ascertain diabetes’s amorphous persona. The objects of study in the following chapters are part of a public archive, one composed of media representations, political posturing, and seemingly banal communicative exchanges. The content for each chapter is often mined from news reports but is also composed of congressional testimony, law reviews, and interviews with public health officials. This is not to say that medicine is absent in my archive. Any mention of diabetes carries the rhetorical remainder of that history and I often engage medical reports directly. Following the work of scholars like Berlant, I find that such a prosaic archive exhibits an ordinariness that “requires an intensified critical engagement with what had been undramatically explicit.”70 This archive is itself a form of rhetorical stitching, and I am conscious of the ways my own perspective shapes and narrows management’s conceptualization. Like all forms of knowledge creation, my own academic expertise helps to structure the materials being explored here: Two of the chapters are deeply dependent on queer theory and LGBT studies, one on feminist investigations of intersectionality, and all are informed by disability studies in some form.

The chapters are loosely organized around two dialogical pairs that accentuate how diabetes is publicly represented. The first binary situates diabetes as easily managed on the one hand and lethal on the other. The second dyad focuses on the necessity of the individual to overcome the disease, which often stands apart from discourses that call for heightened systemic intervention. These four tropes: effortlessness, fatalism, individual transcendence, and institutional regard, all act as major organizing devices for the next four chapters. I contend in the book’s conclusion that these four heuristics blur in discussions of diabetes technologies, elucidating political and cultural obstacles that necessitate contemplation in the decades ahead. As is often the case with academic segmentation, the individual concepts in each chapter bleed into one another as much as they stand apart. The case studies are isolated for the purposes of analytical clarity, aspiring to detail an assortment of themes and figures that constitute diabetes management and the cultural contexts people navigate to make sense of their lives.

As a critic indebted to rhetorical and cultural studies, I have selected the case studies that follow because each elucidates unique qualities about the constitution of diabetes management. Humanities scholars have long utilized particular situations in order to theorize larger cultural trends and social impulses, recognizing that all knowledge creation is inherently contextual and contingent. In this way, the examples that structure each chapter do not strive to make universal claims 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.