Managing Diabetes. Jeffrey A. Bennett
Читать онлайн книгу.
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