Managing Diabetes. Jeffrey A. Bennett

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СКАЧАТЬ 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,” СКАЧАТЬ