Managing Diabetes

The Cultural Politics of Disease

Jeffrey A. Bennett

• Publisher: NYU Press
• Year: 2019
• Print ISBN: 9781479835287
• eBook ISBN: 9781479873036
• Topic: Medicine
• Subtopic: Diseases & Allergies

A critical study of diabetes in the popular imagination Over twenty-nine million people in the United States, more than nine percent of the population, have some form of diabetes. In Managing Diabetes, Jeffrey A. Bennett focuses on how the disease is imagined in public culture. Bennett argues that popular anecdotes, media representation, and communal myths are as meaningful as medical and scientific understandings of the disease. In focusing on the public character of the disease, Bennett looks at health campaigns and promotions as well as the debate over public figures like Sonia Sotomayor and her management of type 1 diabetes. Bennett examines the confusing and contradictory public depictions of diabetes to demonstrate how management of the disease is not only clinical but also cultural. Bennett also has type 1 diabetes and speaks from personal experience about the many misunderstandings and myths that are alive in the popular imagination. Ultimately, Managing Diabetes offers a fresh take on how disease is understood in contemporary society and the ways that stigma, fatalism, and health can intersect to shape diabetes's public character. This disease has dire health implications, and rates keep rising. Bennett argues that until it is better understood it cannot be better treated.

1

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 ther...

Table of contents

• Cover
• Series Page
• Title Page
• Copyright
• Dedication
• Contents
• 1. Critical Conditions
• 2. “HIV Is the New Diabetes”: Analogies of Apathy
• 3. Lethal Premonitions: Fatalism and Advocacy
• 4. Containing Sotomayor: Narratives of Personal Restraint
• 5. Troubled Interventions: “Epidemic” Logic and Institutional Oversight
• 6. Cyborg Dreams
• Acknowledgments
• Notes
• Index
• About the Author