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
