«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
They find social momentum elsewhere. Second, there seems to be the assumption that biosociality requires capital (Bharadwaj 2008; Sunder Rajan 2008). I argue that biosociality can also happen outside bio-capital, marginalised can be bio-social not just bio-available (see Cohen 2005); indeed, it is the relative position of marginality that creates social momentum. Finally, this thesis gives an ethnographic account of the kind of biosociality that is Berlin’s informal Turkish diabetes care that acknowledges how social, political, economic and moral lives are intricately linked.
Social momentum and emergent biosocialities might not always require such baffling technologies. While “bio” to Foucault meant life and the body, Rabinow explores “bio” in regards to life-sciences and bio-tech. Biosocialities in his view gain their social momentum in biotechnologies and scientific innovation. This thesis aims to show that biosociality does not necessarily emerge out of technology. I argue that “low-tech” biologies can have the same impact of shaping identity, group activity, political and commercial interest, and similarly, such sociality can be fairly unaided by technologies. By that I mean, that there has been no breakthrough in discovering a diabetes gene marker, there are no radically new diagnostic or therapeutic tools in the making, nor is the field of diabetes care in Berlin one of virtual chat-rooms and email networking. However, diabetes (and obesity) is a popular topic within local public health circles, gains increasingly coverage by local media, including the Turkishlanguage TV and radio stations, and the migrant population has entered the (economic) focus of health insurances and private care services. Emily Martin’s (2007) ethnographic investigation of bipolar support groups is a recent example of biosociality, not created through biotechnological breakthroughs but alongside a (novel) societal fascination with bipolar disorder. Although not conceptualised as a study of biosociality, her Bipolar Expeditions (2007) explore experience of mental illness, collective negotiations of such experience and the backdrop of scientific knowledge, social discourse and economic interests.
Similarly, a sociality of “Turkish diabetes” had emerged in recent years. In contrast to Martins’s (2007) work, biosociality or bio-activism does not necessarily require privileged status, access to capital and mainstream societal belonging but, conversely, marginality and deprivation can create momentum to form socialities.
The Turkish self-help group in Berlin is constantly struggling for funding, and its members are largely from lower socio-economic backgrounds and challenged by daily social deprivation. The group was indeed founded because funding for more formalised Turkish-language healthcare ended, and members join as their marginal status in formal German healthcare impedes adequate care. The self-help group now offers the opportunity for social participation and to claim services and support (Chapter 7). In Life Exposed: Biological Citizens after Chernobyl (2002), Adriana Petryna explored how Ukrainian citizens deal with emerging social problems in the aftermath of socialism and emerging long-term health problems of the Chernobyl reactor explosion. In this context, Petryna coined the term “biological citizenship” to express how “the damaged biology of a population has become the grounds for social membership and the basis for staking citizenship claims” (ibid. 5). Unlike Rabinow’s biosociality, sociality here does not mean reshaped identities of patient groups, organised in emotional support networks, or activism for scientific research or access to pharmaceuticals or diagnostic testing. Petryna’s biological citizenship is about the reclaiming of citizen’s rights within a reshaping political system, yet based on damaged biologies rather than based on the mistreated and then abandoned social/civic lives. This concept of biological citizenship is also formulated by Nikolas Rose. In his Politics of Life Itself (2007: 133), he envisions citizens not defined by national boundaries but in biological terms, and, for example, holding “biological responsibilities [...] embodied in contemporary norms of health and practices of health education”.
Rose’s conceptualisations of biological citizenship (2007: 131-154), neurochemical selves (ibid. 187-223) or somatic ethics (ibid. 252-259), unfortunately, were not ethnographically explored, and one is left wondering if such concepts can describe a plethora of phenomena and be readily lifted into other contexts, at least without presenting ethnographic evidence. Petryna’s (2002) ethnography not only describes that the disadvantaged and deprived can find their voice in bio-social action but she also fleshes out the delicate interplay of political turmoil, biological catastrophes and emergent market economies. The thesis also aims to present an ethnographic account that acknowledges the complex political, economic, social and moral dimensions that lie beneath biosociality. While Rabinow (1996a) and others (e.g. Bharadwaj 2008; Gibbon 2008; Sunder Rajan 2008) saw links between science, technology and capital and envisioned patients-cum-activists or scientists-cum-entrepreneurs, this thesis will explore how people like the self-help group leader acts as student and teacher, patient and consultant, activist and businessman (Chapter 8). People in Berlin’s field of Turkish diabetes care occupy multiple roles and position themselves fluently within social, economic and political interests. Diabetes management, both as a communal provision effort and a personal self-care practice, is thus affected by the social relations, micro-politics and economics that these roles create.
In conclusion, in this chapter I aimed to summarise key theoretical concepts that will be revisited in this thesis – namely Foucault’s bio-power and technologies of the self and Rabinow’s notion of biosociality – and how they were adopted in contemporary ethnographic accounts. I asked how such concepts can serve to understand this ethnography on Turkish Berliners with diabetes and suggested that some of the ethnographic material in this thesis helps to challenge some assumptions that seem to resonate with the concepts. Mainly, I seek to take marginality and inequality into account that, rather than disqualify people from social participation or self-care, can provide its own momentum.
SECTION 2 Practices of diabetes control: Beyond bio-power
I’m arriving late at today’s diabetes self-help group meeting but Mr Yılmaz has not yet turned up himself. There are only a few people seated already and I announce a general “Merhaba! Nasılsınız?” [“Hello! How are you?“] In the second row a woman with dark shortish curly hair replies “Iyimim. Siz nasılsınız?” [“I’m fine. And how are you?“] and comments my “ben de iyim” [“I’m fine, too”] with a pleased “çok güzel” [“very good“]. I’m not quite sure if she commends my Turkish or my good health but I cheerfully take a seat two rows behind her.
A young woman – in her 30s, or maybe early 40s – with long blond hair tied in the back to a ponytail comes in and says hi to everyone. She especially greets the woman I’ve just spoken to and scans the room for familiar faces. I smile at her and she starts chatting with me in Turkish – whether I’m new, that she hasn’t seen me before, etc. I try to reply in my best Turkish that I have been here before, doing my PhD research. The older woman helps me piecing the words together and finally I switch into German to make myself better understood. The blond woman replies in fluent German with a heavy Berlin accent. She finds my research all very interesting but wonders how I’m holding up with the Turkish. I explain that I tend to understand quite a lot but struggle with speaking – especially if asked too quickly. She laughs and exclaims to the older woman next to her: “That’s just like with you and German.” The older woman also laughs and starts talking in slow yet quite good German that she is sometimes too embarrassed to speak German but does understand quite a lot. I am surprised to hear that as I remember this woman from previous sessions as one of the women who always looks very involved, engaged, independent. I have assumed that she must speak perfect German and probably has a well-paid fulltime job.
I seem to have made her more confident speaking in German […] so she starts telling me about herself. The blond woman has told her about this selfhelp group and after some time she finally agreed to come along one day. She thought she would only attend the meetings every other month but ended up becoming a regular. Indeed she has caught my attention before as she is very knowledgeable and involved in the meetings. I ask her about her diabetes and she says that she has had diabetes for about 15 years but only heard of the group two years ago. Her diabetes control used to be atrocious but now she is very confident and finds it easy to manage her diabetes on her own. She smiles at a man in the group who is reading tentatively through nutrition tables and seems quite obviously confused. “It’s all a matter of the right information”, she explains. Her doctor never explained much to her so she did not know how to deal with her illness before. “For example my cholesterol. I got these tablets and my hair got thinner and thinner. So I just stopped taking the tablets at all. Now I found better tablets and also know how to make dietary changes to lower my cholesterol.” She also feels much more empowered through the self-help group in looking for the right help. “If my [family] doctor now doesn’t have time for me I just tell him that I’ll go and see my diabetologist instead.” These excerpts from my field notes (03.02.2007) document my first conversation with Rana and Sevim, regular members of Berlin’s self-help group of Turkishspeaking diabetics (Türk Şeker Hastaları Öz Yardım Derneği), who became two of my closest informants. Rana, a 60-some-year-old mother and grandmother, had joined the self-help group about two years ago. During group meetings the small, youthful looking woman with short brown wavy hair and sporty clothes was always decidedly interested, remarkably knowledgeable and, above all, good-humoured, sympathetic and thus much liked by everyone. I noticed her right from the start during my early days of participant observation with the group and she soon became one of my first contacts within the group as she always had a friendly word for me.
She had been living with diabetes for over ten years when she got acquainted with a woman whose husband’s family lived in Rana’s Turkish hometown and had known her diseased mother. The 40-some woman, Sevim, who always had her blond hair tied back and wearing the practical casual clothes of a mother of three, had diabetes herself and had already been a regular member of the self-help group when she tried to recruit her new friend. It took quite some convincing but finally Rana came along and soon joined the small group of knowledgeable regulars. There, she learned about the complex workings of the body altered and challenged by diabetes, and how a balanced diet (mutfak), physical activity (hareket) and medication (ilaç) can manage her diabetes. Both Sevim and Rana had spent the last couple of years putting their newly acquired knowledge into practice, monitoring and listening to their bodies and re-arranging their lives around these new practices.
This section will explore individual experiences of living with diabetes. A study of chronic illness invites investigating the “expert patient” (Lupton 1995;
Nettleton 1997), which is not only the clinical ideal of a patient who responsibly acquires knowledge and skills to “professionally” self-manage chronic illness in everyday life, but it is indeed the very real everyday lived experience of diabetes’ impact on individual practices, bodies and personhoods. I will write about those who share the label “diabetes patient” and the everyday experience that comes with it.
During my fieldwork I joined them on their daily endeavour of “learning”, “monitoring”, and ultimately “manoeuvring” diabetes.
Although it is the last section of this thesis that will investigate diabetes as a communal and political experience, the politics and economy of diabetes, and the groups invested in such interests, this section cannot be free from politics and sociality. Yet the focus is less how such politics are shaped within a wider context of local diabetes care provision but how politics shape individual experiences of diabetes care. The experience of diabetes as a Turkish migrant in Berlin should be neither understood as a story of domination, submission and resistance, nor is it an experience that can be understood in a framework that suggests a space free of politics. Rather, there are other aspects, for example emotive effects of bodily experience that add to the understanding of practices of diabetes control among my research participants. Chapter 4 will explore how knowledge, as I encountered it, is more than an abstract entity that is held and withheld, disseminated or limited.
Knowledge is intrinsically linked to power position in Foucault’s power/knowledge account, yet is also actively sought and reclaimed. Knowledge is practically acquired, made sense of through practical experience. Chapter 5 will describe how monitoring diabetes is more than the “clinical gaze” entering homes but a tool of making sense of an illness experience that often lacks an immediate bodily encounter, framing the parameters of illness and risk, seeking security and sometimes gaining anxieties in return. Thus on a daily basis, knowledge and skills are tactically employed in order to achieve an individual grade of diabetes control. They do so on their own terms, as Chapter 6 will finally investigate, neither blindly subjecting themselves to some sort of biomedical hegemony of “healthy living” that demands a certain diet nor representing inert, disadvantaged migrant patients that do not understand or somehow “resist” such dietary recommendations. Rather, such tactics of diabetes control follow an immediate demand of managing complexities in lives that are often outside concerns directly linked to diabetes. This section thus aims to look beyond notions of bio-power (Foucault 1898 ) to understand highly disciplined practices of body maintenance.