«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Others, however, were very strict in their diet, for example 75-year-old Sadık who was famous for being very knowledgeable. He had digital scales to monitor his carbohydrates consumption (as advised by Yılmaz ) and he once brought them along to accompany Yılmaz to one of his appearances on local Turkish-language TV and demonstrated to viewers how he would weigh his slices of bread or portions of rice. I was shown the footage of this TV programme but was never close enough to Sadık (nor most of the men of the group) to visit him at home and see if these scales were indeed part of his daily routines. He also seemed to be the only man in the group in charge of his own cooking as he lived alone as a widower.
Despite a certain liberty in what kind of food was eaten and with how much stringency, most self-help group members seemed disciplined in their food practices.
That such discipline was not without dilemmas, for example in their social lives, and involved sacrifices, was often voiced. The following story particularly comes to mind. I was invited to meet a woman who was the neighbour of a self-help group member. She was not a member herself and her friend had told me that her diabetes was badly managed and that the poor suffered from severe complications. This had not always been the case, she told me when meeting her. She used to follow her husband’s strict routines which he, a diabetic himself, had carefully devised in the last years of their marriage. However, after her husband had died she dropped his programme of diabetes control and told me she particularly enjoyed her lie-ins after being forced daily breakfasts at eight o’clock sharp for years. (Field notes 10.05.2007) Theorising practices of discipline Previous research on diabetes such as Ferzacca’s (2000: 28) study of compliance among diabetic patients in an U.S. Veteran clinic suggested that “diabetes management […] focused on the cultivation of an ideal self whose ‘technologies’ and ‘ethics of self-care’ mimic a capitalist logic that links self discipline, productivity, and health”. Ferzacca can be consigned to the ranks of social scientists who seek understanding of the workings of health politics, public health and healthcare practices – especially on such issues as obesity or healthy living – in “neoliberalism”. Indeed it seems seductive to focus on the hegemonic character of today’s biomedicine that has partly abandoned its devoutness to medical technologies and magic bullets and shifted much emphasis to illness prevention, i.e. the population’s responsibility of healthy lifestyles. Others seek explanation in Foucault’s potent concept of “bio-power” (1998 ) and his later work on “self-care” (1990 ) (cf. Peterson and Bunton 1997). Foucault conceptualised power as something coercive and persuasive, and suggested that medical authority exercised power over the patient through surveillance and emphasis on self-care and -discipline. Power is not purely exercised from above, the medical profession, but also reacted upon and internalised by the patient. Medical dominance thus exerts itself in everyday life (Foucault 1998 ). His later work suggests a more moral economy of self-care (Foucault 1990 ). Ferzacca (2000) indeed suggested that his data on diabetes management resonates only at first glance with the notion of bio-power. He explored how diabetic U.S. Veterans negotiated their self-care in quite conscious and individual idiosyncratic self-management practices – much like what I could observe during my own research. However, turning to an argument of neo-liberalism, he argued that such normative selves profoundly stemmed from an ideology of capitalist production that were shared by both clinicians and patients.
Yet, my research participants’ experience of handling of diabetes control seems to be only partially explained by notions such as Foucault’s sovereign “disciplines” (1991), bio-power (1998) or self-care (1990), or with capitalist efficiencies of neo-liberalism. I believe the story of my research participants – or rather of their day-to-day experiences – is not foremost a story of hegemony, dominance and oppression, or one of resistance, subversion or even (moral) conformism. True, the members of the diabetes self-help group absorbed medical knowledge on diabetes management (often quite uncritically) and effectively implemented it into their lives to achieve control over their illness. True, they were not “rebels” that resisted such prescriptions but devotedly baked spelt bread to replace their pide bread, substituted cottage cheese with feta. And yet I suggest that it would be a reductionist view to understand them as “victims” or “subordinates” who unconsciously buy into a medical hegemony that profoundly reshape their lives, replacing their ideas of “good lives” of baklava, börek and kebab with “healthy lives” of salads, brown bread and brisk daily walks.
They did they not blindly adopt recommendations but negotiated their utility in their daily lives. Every self-help group member found her own way of making sense and implementing recommendations into the everyday. While a lonely widower who did not tend to cook his own meals for most of his life enjoyed the company and guidance of digital scales and formulated recipes, an experienced cook like Rana who had to negotiate the diet of partner, parents, children or grandchildren would handle nutritional advice in a very different way. Both practices, however, were following the same motivation of controlling diabetes and therefore improving well-being and using the experience of a certain diet’s impact on their bodies as parameters to evaluate such practices.
This following story I was told in regard to exercise and diabetes control can illustrate such experiential tactics. Rana managed to lose lots of weight during the past two years – mainly through changing her diet – as I could see to my surprise when the lean petite woman showed me family photo albums that pictured a quite obese Rana over several decades of family outings and get-togethers. Although she used to like swimming and still walked quite a bit she was suffering from bad back pains when I first met her and she felt immobilised. Physical activity (hareket) is an important part of diabetes self-management. Exercising lowers blood glucose and cholesterol levels, helps losing weight, improves insulin resistance and blood circulation and generally less insulin is required. As many members of the self-help group share Rana’s plight of skeletal complaints as well as a certain reluctance to take on sports, Yılmaz mainly recommends walking (yürümek). “Yürümek, yürümek, yürümek!”, was his mantra during each group session. Interestingly, Rana expressed her worries of loosing even more weight, as she considered herself quite skinny now and she would at least like to keep her little pot belly not be all “skin and bones”.
This aesthetic concern might add to her general unease with exercise and sports since she had developed back pains. Nonetheless she had experienced and routinely and effectively employed the immediate impact of physical exercise on her diabetes control. For example, some day she told me about the other night, when she had measured 240 mg/dl after dinner. She was really shocked and had reacted by exercising for an hour to get the blood glucose down, jumping around in the bedroom “like skipping rope, just without a rope, and my husband thought I’m crazy”, she giggled. But Rana’s exercise had been very effective and levels were down to 130 after an hour. (Field notes 13.03. 2007) Understanding Rana’s motivation in terms of Ferzacca’s moral economy of self-care seems hardly applicable. It would mean she was “buying into the capitalist health paradigm” of exercise as means to achieve disciplined and productive bodies, as for example suggested in Ritenbaugh’s (1982) study on American middle class women’s quest for slim bodies and her conclusion that obesity and its moral economy should be regarded a “culture-bound syndrome”. Granted, far from appreciating the aesthetics of a slim body, Rana did nonetheless accept the therapeutic potential of exercise. Yet this appreciation followed the situational urgency and practicality of such exercise.
Bio-tactics of diabetes control In order to understand my research participants’ ways of manoeuvring diabetes control, I borrow the term “tactics” from de Certeau’s work on the Everyday Practices of Life (1984). De Certeau emphasised the agency of the ordinary person.
For him consumption, for example, is not necessarily in opposition to production.
Rather, the consumer, for example when reading a book, possesses as much creative agency by bringing it alive in his imagination as the person who wrote the book. De Certeau traced how ordinary people manoeuvre through ordinary situation of living, for example the work place or walking through urban spaces. He distinguished between “strategies” (here e.g. diabetes care plans), which are embedded in institution (e.g. the healthcare system), occupy fixed sites of operation (clinical spaces) and manifest themselves in products (information brochures, blood pressure and glucose meters), and “tactics” of the ordinary (patient) who make such strategies “habitable” to their lives (ibid. 34ff). In his approach, de Certeau clearly considers “tactics” as tools of the weak, as flexible and “unmapable” forms of subversion or resistance. I thus prefer de Certeau’s concept to Foucault’s moral self-care (1990 ), as his idea of “technologies of the self” towards achieving freedom (Foucault 1997) seem to require a certain degree of being free. While Foucault’s earlier ideas of bio-power (Foucault 1998 ) feature the ill, the criminal, in short the marginal, self-care seems to apply to men, never servants or women. I regard tactics as a useful concept to understand how my research participants manoeuvred health advice and their ill bodies in a formal healthcare system that does not provide adequate care or information. Resourcefully adapting clinical frameworks to their individual and communal life circumstances on their own terms, is what could be called “bio-tactics” as an alternative approach to bio-politics.
My supposition that Rana and her colleagues were using health recommendations to their own ends is, of course, neither a new nor a very radical idea. Literature on chronically ill patients often explores how they “are often creative in the way in which they react to their physical conditions (Nettleton 1995: 70). My research participants’ tactics can well be understood as a case of “coping strategies”, balancing health advice to maintain a certain degree of normality, hiding illness, or tolerating effects of illness (Nettleton 1995: 92ff). Indeed, all people, not only chronically ill or “expert patients”, manage their health with a certain agency, often seeking advice with family, friends, neighbours or media before seeing a doctor (“lay referral”, Freidson 1970; Hannay 1979), consulting several medical systems to meet specific needs (on complementary medicine, Sharma 1992), or negotiating health risks (e.g. Davison et al. 1992). Accordingly, the self-help group members learned to negotiate clinical encounters and exert their own influence, for example by tactically scheduling appointments, discussing and flagging side-effects of medication, or demanding to see a specialist.
However, diabetes self-management is primarily happening outside clinical settings and (unlike many other chronic illness and therefore unlike much what is explored as chronic illness coping strategies) focuses on lifestyle rather than medication as the centre of therapeutic efforts. Although most of us would certainly self-manage our everyday health and lifestyle in tactical ways, for example by indulging a bit one day, then eating healthily the next, this would not work to keep diabetes controlled. Diabetes self-management demands a highly structured and long-term practice that renders every room for manoeuvre a delicate and conscious matter. Insofar as everyday diabetes self-management is thus a much more complex and urgent exercise than the kind of health practices we all engage in at times, de Certeau’s (1984) notion of making (constrained) social lives habitable seems appropriate in understanding “agency” here in the sense of a purposeful and indispensable engagement rather than the mere negation of inertness.
I thus speak of tactics and manoeuvring, when Mol (2002), for example, would refer to “tinkering”. I suggest this language of military connotation, not necessarily because I consider practices of diabetes control as a battle (cf. Sontag
1991) but because these are indeed deliberate, purposeful and urgent practices to defend life, yet at the same time messy, risky, not without defeats, surrenders and threat to life. Successful tactics can achieve a better and longer life; in the background of such practices linger potential stroke, blindness, amputation or kidney failure.