Managing Diabetes. Jeffrey A. Bennett
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