«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Two bodies of literature spring to mind when framing this research. First, there is Michel Foucault’s powerful concept of bio-power (1998 ). Diabetes2 requires severe lifestyle changes, careful monitoring of bodily states, and meticulous discipline in nutrition, in order to keep this chronic illness under control. In fact, such This is an observation made by all of my research participants; there are no statistics on Berlin or a national register that could confirm prevalence rates.
2 Unless otherwise stated, “diabetes” refers to type 2 diabetes in this thesis. Type 2 diabetes is the most common form of diabetes and accounts for 80 to over 95 per cent of cases depending on the population; type 1 diabetes is an autoimmune disorder that typically develops at an early age and requires insulin therapy for survival, though also strict lifestyle management (WHO 1999). For a longer discussion see Chapter 1.1.
everyday body maintenance and monitoring is as important as any medication.
Although diabetes self-management is a vital part of the therapy from a clinical perspective, I will argue that this is a story beyond bio-power, beyond domination (over knowledge or bodies) or resistance for that matter. The Turkish-origin Berliners with diabetes I met engaged in deliberate practices of diabetes control and are not mere subjects of a dominant medical system that promotes a healthy living paradigm. Foucault’s “technologies of the self” (1990 ) are a more adequate concept, but again I seek to look beyond Foucault’s understanding of self-care, not to consider it as an ethical exercise but suggest an exploration of self-care as a practical motivation to alleviate bodily and emotional distress. A Foucauldian perspective might also imagine a state that is concerned about its migrant population whose status of health – and thus healthcare costs – seems to be particularly vulnerable to chronic illness and obesity. However, interestingly, state institutions are almost absent in this narrative. While universal access to healthcare provision is guaranteed on paper, in practice, migrant patients are faced with healthcare services that do not acknowledge their special needs; services are often overwhelmed and strained by high illness rates and social deprivation, provided in a language many patients do not speak or understand very well, with dietary recommendations that ignore or offend their own food practices. The Turkish-origin Berliners in this thesis who engage in practices of diabetes control largely taught themselves to adopt such discipline.
The other body of literature that frames this thesis is on biosociality, coined by Paul Rabinow (1996a) who imagined social groups forming around biological identities marked by ill-health or illness susceptibility. This might be a less obvious choice as biosociality appears to require biotechnologies, broadband communication, high-profile advocacy and a quest for gene markers and subsequent high-tech therapy (see e.g. Rabinow 1999; Gibbon 2008). Neither can be found in this thesis and, although literature suggests that marginality and social disadvantage prevents sociality (Bharadwaj 2008; Sunder Rajan 2008), here are narratives of biosociality and bio-activism outside the realm and capital of biotechnologies. In what I summarise as politics of diabetes control I argue that I find social, political and economic engagement due to and with diabetes beyond previous conceptualisations of biosociality. The growing prevalence and awareness of diabetes in the Turkish population of Berlin, together with their increasing political organisation and economic entrepreneurship, gives rise to biosociality unanticipated in previous accounts. While the self-help group may be at first sight an obvious representation of biosociality, marginal groups are previously only considered bio-available (Cohen 2005). Moreover, the self-help group’s bio-activism is less interested in advocacy work than in community outreach work and peer-education; and bio-capital (Sunder Rajan 2008) here is less a story of the power of pharmaceutical companies but about local business ventures and interests that form around diabetes care.
In short, this thesis explores practical engagements with diabetes, doing diabetes, much like Annemarie Mol (2008: 89) looked at “doing bodies” in her diabetes research. However, my exploration expands from patient practices to political and economic activities. Also, while Mol (2008: 9ff) was interested in healthcare practices and extracted tales of doing diabetes from professionals’ and patients’ narratives, patient consultations and text analysis, I concentrated as much as possible on observing such practices in everyday lives. An ethnographic approach was used, including a 12-month period of participant observation as well as narrative interviews with members of a Turkish self-help group, family members, health professionals, and others involved, exploring relative access to diabetes management knowledge, negotiation and strategies of diabetes control, and social, political and economic action and participation in diabetes care. In doing so, diabetes among Turkish-origin Berliners becomes both a personal, individual exercise of everyday practice as well as a form of sociality, political activism and economic enterprise that involves not only patients and their healthcare professionals.
The following thesis has eight chapters which are divided into three large sections.
Section 1 should serve as an introduction.
Chapter 1 aims to give background information on diabetes and TurkishGerman migrants but should also highlight why I think that these are relevant anthropological avenues of investigation. Diabetes appears as a mundane illness and thus sits uncomfortably between its perceived everyday-ness and triviality and its actual severity and rising global prevalence. The clinical stance on diabetes is similarly ambivalent. Diabetes has been known for thousands of years and is still not fully understood; there is no “magic bullet” and its diagnostic categories are somewhat arbitrary and contested. Moreover, the main therapy for the vast majority of diabetes cases lies in the hands of the patient in lifestyle modification and body maintenance, and here lies the most fruitful line of inquiry for anthropology.
Similarly, the Turkish population in Germany has a specific history, it is now a large population group, highly stratified, and increasingly (politically) organised, yet still much marginalised, living with high rates of unemployment and social deprivation.
Such an increasing social, political and economic organisation while living in challenging social circumstances may explain how they respond a bit differently (or very specifically) to diabetes than the less politically organised and challenged main population.
Chapter 2 outlines the methodology of this study and its initial research question of exploring marginality. It introduces the setting, Berlin, and the major research participants that not only include patients and doctors, but respective interests groups, their representatives, and more.
Chapter 3 locates the thesis in its theoretical framework and presents a review of “bio-anthropologies”. By that I mean contributions from various branches of social anthropology (and neighbouring disciplines) that bring the biological into the focus of social investigation. This thesis addresses Foucault’s bio-power (1998 ) as well as his later work on self-care (1990 ). Numerous scholars have taken these theoretical frameworks, for example in order to investigate public health.
I will also introduce Rabinow’s notion of biosociality (1996a), its legacy and limitations in ethnographic explorations.
In Section 2, the thesis explores “practices of diabetes control: beyond bio-power”. It is largely drawing from experiences of a Turkish-language self-help group whose members have become expert patients, rather than representing the common image of the inert, disadvantaged migrant patient. Themes are chosen in terms of their prevalence in everyday conversations, narratives and group meetings: learning about and knowing diabetes as a prerequisite of managing one’s diabetes, the presence of numbers to talk about diabetes, personal experience and perceived health, and the everyday tactics of diabetes control with food as the most prominent example.
In Chapter 4, I explore the importance of acquiring knowledge, discovering the practicality of knowledge and negotiating access to knowledge. Patients seek knowledge on their illness when initially diagnosed, and education is the first therapeutic strategy from a clinical perspective. Knowledge/education also seems to be the main provision gap of the Turkish diabetic population in Berlin. I look at patient education and the self-help group’s peer education and explore that there are all kinds of knowledge, and that these are inevitably linked to power relations, are guarded or deliberately sought. There is basic knowledge, deemed fit for “challenged patients”, and very complex knowledge that “make” expert patients. Knowledge can be very specific and specialised, taking varied lifestyles, eating habits and social lives into account. Knowledge can be very abstract, the jargon and expertise of an elite, but can be appropriated by patients and very practical. Knowledge can already exist although not be recognised, for example on food and cooking, and knowledge can be embodied, for example knowing the symptoms of an approaching “hypo” (low sugar that can lead to coma), or feeling too high sugar levels that start affecting eye sight. Emphasis in this chapter is on the practicality of knowledge; knowledge as practice.
Chapter 5 is then about the most abstract knowledge and practice in diabetes control: numbers and glucose meters. It investigates the specific knowledge of numbers, clinical metrics of blood glucose levels, cholesterol, hypertension. These numbers act as forms of communication and are both abstract representations of diabetes and practical parameters for experiencing and engaging with diabetes. While it could be regarded in terms of technologies of the clinical gaze (Foucault 1986 ), turning lived experiences into abstract meter readings, I argue that this is a deliberate and practical practice by patients in order to make diabetes visible, static and thus manageable and habitable.
Finally, Chapter 6 is about such active practical engagement with diabetes as both a daily obligation and inevitability but also a means of negotiating diabetes management and making the experience habitable. With the example of diet I aim to show how patients manage diabetes control in the everyday. If strict recommendations of how to control diabetes (by severely amending lifestyles according to biomedical frameworks of healthy living) can be understood in terms of Foucault’s bio-power (1998 ), I suggest to understand my informants’ active involvement in such daily practices as bio-tactics (in accordance to de Certeau’s tactics of everyday life, 1984). I go on to explain that, indeed, the management of complexities goes beyond their experience of diabetes but expands to their generally challenged life circumstances. Their highly routinised practices of diabetes control could even be conceived as a general tactic of life management when other problems such as depression or deprivation lack management tools.
Section 3 shifts its attention to another dimension to Turkish Berliners’ experiences with diabetes. This could be described as the collective response to the presence, burden, or even threat of diabetes: “politics of diabetes control: beyond biosociality”.
Chapter 7 examines how diabetes spearheads communal activity and participation. Diabetes is diagnosed and treated as a communal problem that requires a self-management approach as formal state provision is inadequate. The diabetes self-help group is not only a social mode of diabetes control but offers social activities that are independent of health concerns. The group offers social participation and engagements for its members beyond their – often marginal or solely private – family and work roles. Such sociality of diabetes control can be related to frameworks of biological citizenship, bio-activism and biosociality. Here I revisit biosocial literature (Rabinow 1996a) that only assumes social momentum in new bio-technologies that challenge “old socialities”, while I say that a social and political situation of deprivation and increasing political organisation as experienced by Turkish Berliners combined with the relatively new biological burden of diabetes can trigger similar reconfigurations.
Chapter 8, finally, looks at the kind of biosocialities that emerge around Turkish diabetes care in Berlin and how diabetes indeed provides Turkish Berliners with a platform of economic and political engagement. There is a vibrant field of involved individuals and groups. What marks these participants are the fluent and complex roles they occupy within this field of informal diabetes care. While biosocial literature imagines the patient-cum-activist, this chapter explores how diabetes adds many roles, for example a patient can be student, teacher, expert, layperson, activist, and businessman. These varied and often competing roles, then, play out in a local micro-political economy. Diabetes care is embedded in a local economy of healthcare, but also in social structures of deprivation and entrepreneurship. This local market competition also links to contestations of authority and knowledge and hierarchical structures. In addition to such social and political economies of diabetes care, there are also moral economies at play that question and negotiate motivations and motives of engagement. Performances of ethical behaviour emphasise solidarity and philanthropy and discredit monetary motivations.
Chapter 1: Context
The following chapter aims to provide the context for this thesis. It will explain what is relevant to know about diabetes when reading this thesis, and give an introduction to Turkish-German migrants, their place in German society and experiences of marginalisation and increasing political activism. Above all this chapter should highlight why Turkish-German diabetes is a relevant and fruitful anthropological avenue of investigation.
1.1 The social life of diabetes