«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Here, I also see the limitations of de Certeau’s notion of tactics, as I aim to avoid a simplistic understanding of tactics’ sole purpose in resistance. I believe the self-help group members’ motivation lies in their personal well-being, the rather complex and urgent exercise of preventing organ failure and early death, rather than reacting to some dominant ideological discourse or power. Telling their story as one of power and domination, or moral obligation, would flatten the account as there was something much more emotive and experiential that guided their practices. I believe it was the positive experience – feeling less tired and sluggish, improved eye sight or returning sensation in hands or feet – that resulted from enacting their new knowledge, not abstract authoritative advice from their doctors that guided their practices. Revisiting the field notes excerpts (03.02.2007) at the beginning of this section (p.88), Rana’s experience with cholesterol medication can illustrate this argument. As she told me, she had gained knowledge and confidence in the self-help group to challenge her doctor’s choice of cholesterol medication. The medication had caused her hair thinning and falling out, so, at first, she had simply stopped taking the pills. Later, with the self-help group, she learned how to actively engage in her healthcare by voicing her wish to change medication and adopting some physical exercise.
In conclusion, food and food practices occupied centre stage in the lives of my research participants who were living with diabetes. Dietary advice was intrinsically linked to therapeutic recommendations that were disseminated, shared and negotiated within the self-help group. This was not least significant as food was immensely important in their everyday social lives. Dietary recommendations were put into practice in individual and highly conscious ways. This meant that self-help group members made varied but deliberate decisions in their daily lives on what types of food might be amended, replaced, or kept, and if family or guests would be involved or nutritional changes confined to own diet choices. This was done with various degrees of rigour but always in view of advice and in line with a certain clinically shaped discipline. De Certeau’s notion of “practices of everyday life” (1984) help to understand how common (lay) people use such tactics to make their structured worlds (or the expectation of structure) habitable through their own active engagement. Negotiating and amending diet, as I encountered it, was an idiosyncratic and powerful exercise. I do not understand it as a mere case of hegemonic domination or resistance but see it as intrinsically linked to a much more emotive, embodied and urgent motivation. By that I mean that their everyday lived experience of diabetes was shaped by the physical experience of feeling the impact of dietary changes of, for example, regaining eye sight and sensation in their extremities, and not by negotiations, challenges or constraints of power relations or moral commitment. In view of this physical and emotional basis of their practices, “tactics of diabetes control” have a very different quality to Foucault’s (1997) “technologies of the self” as a personal moral economy of self-care that values the healthy body as the vital vessel of a healthy mind. The following chapter will have a closer look at such moral economies and why the notion of a “good life” might miss the point of understanding tactics of diabetes control.
6.2 Managing complexities The above account of how food features in practices of diabetes control shows merely a snap-shot of the extensive and multifaceted regimes of illness selfmanagement that guided my research participants’ lives. Learning about diabetes control and implementing this knowledge into their everyday lives changed, to pick the above example of diet, the types of food they were eating, how they prepared food, and when they consumed such food. As food is ultimately a social, not only an individual experience, these changes affected and were affected by social lives and relations in family life, friendships, community participation. Considering such altered socialities, one might be compelled to ask how lived experience of diabetes shapes personhood and selves. Literature on chronic illness debates such phenomenological investigation (of “suffering”) and so far I have avoided to explore “being diabetic” in favour of what is significant about “doing diabetes”. Incidentally, “diabetic” as a personal noun is (in international literature) considered an pejorative, labelling term, as it would reduce people to their illness when they would prefer to be identified as mothers, wives, friends, professionals, and so on. Although this is not a discussion my research participants ever had, the underlying argument fits their lives very well. Diabetes neither seemed to dominate their self-perception nor was it inevitably their only cause of “suffering”. In this subchapter, I aim to explore the social lives of the Turkish migrants34 with diabetes beyond their diabetes. These lives were perforated by many other concerns that were often more worrying, debilitating, or simply more current than diabetes. In fact, it seemed that practices of diabetes self-management provided them with viable tools of regaining control in such contested lives. Addressing finally the question if the highly scrutinised and structured lives devoted to diabetes control as explored above challenged notions of what a “good life” is supposed to be, I would argue that firstly, their perceptions of what constitutes a “good life” had been challenged long before the adoption of diabetes control routines. Secondly, resentments towards altered and limited lives through diabetes control were directly juxtaposed to the lives of others (neighbours, acquaintances or family members) whose un-controlled lives featured severe diabetes complications and bodily suffering (cf. Mol 2008).
“Migrant” can surely be considered as similarly pejorative as “diabetic”, as it too reduces a person to a label that – at least – might not connote a particularly pleasant and proud experience compared to being a parent, partner or a skilled labourer.
Changing lives As mentioned above, the lives of those members of the self-help group who had started to apply and negotiate everyday practices of diabetes control had severely changed. Dietary practices involved for some of them home-baking, substituting butter with olive oil, or keeping track of each portion of fruit and slice of bread. Most were challenged to fit regular meals – which in their social worlds was a most irregular habit – into their daily lives without too much disruptions to themselves or others, and to plan bringing snacks whenever leaving the house. Then there were other lifestyle alterations that were not necessarily linked to food, which included physical exercise to compliment dietary changes – and meeting the self-help group, on Saturdays, which used to be for many the day of shopping and other chores.
Finally, there was the actual medical aspect of monitoring glucose control and the often extensive medication regime (not only insulin or glucose-lowering drugs but also blood thinners, cholesterol and hypertension medication) which added another procedure of structure or rather disturbance. These severely planned lives were tolerated by many and even welcomed by some (as in the case of the widower Sadık). Others clearly suffered from this discipline such as the woman I mentioned earlier who immediately dropped her husband’s stringent diabetes practices after his death.
In light of such accounts one could conceptualise diabetes as an allencompassing, defining and identity-shaping experience. Many studies explore chronic “illness narratives”, and there is an ever growing literature on illness and phenomenological subjectivity. Much of medical anthropological accounts understand personhood and self as shaped in lived, embodied experience of “suffering”, while seminal sociological works investigate the more temporal disjunctures caused by chronic illness. Bury (1982) framed the experience of being diagnosed with chronic illness as “biological disruption” that separate past lives from altered future imaginings. Charmaz (1983) considered the impact of altered social relations in disability on personhood as a “loss of self”. At first glance, my research participants’ “illness narratives” contained similar stories of bereavement and discontinuity. Diagnosis was narrated as a great shock, and often a stark reminder of the loss of parents at a too young age due to same illness. Indeed, their lives had been greatly altered, and biographies truly changed. Yet I could not find evidence that their perceptions of self and personhood had been severely shaped by diabetes as a singular decisive experience. This might be largely due to my methodological choice of observing how they “performed” diabetes (practices) rather than how they phrased their diabetes experience. However, in doing so, it became quickly apparent that their lives did not revolve entirely around diabetes and that they were continuously challenged by various issues, not just diabetes.
Complications and complexities For most self-help group members, bad health did not only mean diabetes and its complications but included skeletal disorders from arthritis, osteoporosis to slipped discs as well as depression (cf. Lawton et al. 2006: 48). Each time I met my diabetic research participants we would exchange the typical array of polite greetings in Turkish. Once I knew some of them better, in the sheltered environment of self-help group or after having become a more frequent guest in their homes, I would get honest answers about their physical wellbeing. Rana would usually give me updates on her back pain, Feyza on her husband’s knee operations, while diabetes was rarely discussed in the sense of “how one was doing”. Hilal, the patient consultant, told me that chronic pain was a common problem within the Turkish community of Berlin.
Many Turkish migrants of middle to older age were suffering from skeletal disorders, which were mainly due to the hard manual labour that had defined most of their working lives. Some looked back to bleak childhoods that involved labour from a young age in farming or the household. Such skeletal disorders were often leading to extended sick leaves, long-term unemployment or early retirement. As a result, people grappled with the loss of social roles of providing for the family or of being a valued community member. Hilal explained that her patients struggle with feeling lonely, bored and useless. Women have spent their whole lives looking after their children and often working full-time, too. Inevitably, their children leave home (several generations in one household is not common anymore and not feasible in cramped deprived housing), while sickness (and Berlin’s economic situation) forces unemployment or early retirement. Accordingly, men lose their roles as household providers, either as their wives also work in fulltime employment due to low household incomes or (more often) due to the men’s own unemployment or early retirement. Women, especially, also told me that they were still living in great home sickness and looked towards uncertain or often unwanted futures. Their husbands had promised to return to Turkey eventually, yet children and now grandchildren were born that make a return and retirement in Turkey impractical. Such challenges are identified as the psychosomatic causation for other chronic pains such as persistent headaches and stomach aches and considered the major cause for depression, a widespread illness which was often well hidden. Only by the end of my research did I realise that many of my research participants were suffering from depression and were in fact in medical care – and that included not only those research participants who were living with diabetes. Depression can also be a complication of diabetes or perhaps even cause diabetes (Mezuk et al. 2008). Obesity as an eating disorder in turn was also related by Turkish-origin doctors to these social challenges.
Such social problems of deprivation are, of course, not only significant in relation to health, and pressures of feeding your family, trying to get them into education and employment and negotiating other issues around welfare benefits, housing and crime in deprived areas pose challenges in their own rights not only as contributors to experiences of depression, obesity or diabetes. The self-help group leader lamented that people would not be able to afford the bus fare to get to the meetings and the immense success of handing out free glucose meters (see Chapter 5.2) was surely related to profound experiences of deprivation. The way severely challenging social lives are both departures and disruptions to diabetic lives is also explored in Schoenberg et al.’s (2005) article on “lay discourses on diabetes” and stress in multiethnic poor Americans. The main argument is that some patient groups’ lives are more complicated than others and often unaccounted for.
Participants of the study reported that severe poverty, crime, and therefore stress of bereavement, fear of losing one’s livelihood or indeed life, and multiple day jobs to provide for the family hindered diabetes control and healthy diets, not simply “busy life schedules” as acknowledged in very middle-class centred healthcare provision.