«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
I soon realised, however, that I got only “textbook answers” from my informants. Their long involvement with the self-help group and the training they had received there, had largely made them adopt the biomedical understanding of diabetes as their “explanatory model”. This also questioned another “traditional” concept within medical anthropology: the distinction between “illness” and “disease” (Eisenberg 1977). For decades, medical anthropologists considered “disease” as “something that physicians diagnose and treat” whereas “illness” referred to “the experience of disease, including the feelings relating to changes in bodily states and the consequences of having to bear that ailment” (Radley 1994: 3). The simple binary division would be that there is the (allegedly universal) textbook definition of diabetes mellitus – “disease” – which is diagnosed by biomedical physicians, but that there is also the individually experienced “illness” diabetes (cf. Ecks 2008).
However, this distinction in illness and disease has been rendered somewhat redundant in current approaches within medical anthropology, and this research project indicates that this simply dichotomy does not hold up any longer in many research settings. Patients would reproduce the textbook definition of diabetes mellitus – “disease”, while health professionals acknowledge that the understanding of the individually experienced “illness” diabetes is at the heart of successfully guiding patients’ self-management. Later Kleinman (1988) revised his approach of explanatory models and developed the less static and narrow framework of “illness narratives” in order to explore individual coping with illness. I agree that a narrative exploration of illness experience entails more utility in the framing of illness management as an active social process than a static “model approach”. Nonetheless, it seemed that in such a biomedically charged environment “illness narratives” also provides only very limited insight.
Participant observation: witnessing diabetes Instead of solely relying on such narratives, I decided to refocus on the practices of “doing illness”, the practice of illness management rather than the perception of illness. Accordingly, participant observation became the heart of this project’s study design, sitting in on education sessions, self-help group meetings, TV studios, community information events and talks where knowledge on diabetes is shared, and accompanying people into their homes where this knowledge was put into practice.
Participant observation is the core method of ethnographic research, and distinguishes social anthropological inquiry from (most) other social sciences.
Wolcott (1999: 46, emphasis in the original) states that “[e]xperiencing seems an especially appropriate label for drawing attention to what is gained through participant observation.” Such first-hand experience includes all our senses: we see (people, events, places, colours), hear (stories, music, laughter, sorrow), smell (sterile clinical spaces, aromatic mouth-watering food), taste (e.g. difference between tea with sweetener and sugar, fried and grilled meat, low-fat and full-fat yoghurt) and feel (heat, cold, anger, irritation, joy). The ethnographer can witness what people do in their everyday lives, how they go about in their mundane routines, and can participate in such practices.
The most prominent example in this research project is probably food, which is such an important element in diabetic and Turkish lives. I enjoyed great food at almost every visit to people’s homes. I was able to watch women cook, was sometimes made to help but always served as a guest. Often, I joined the rest of the family to eat different food than the diabetic host, and certainly always larger portions. I learned about norms of hospitality that are equally obliging to guests.
Accepting several helpings was often inevitable, and such over-eating could be an uncomfortable experience – granted, not as uncomfortable as if I were diabetic and had to be concerned about my insulin dosage. Meals would be preceded by blood glucose self-testing and often insulin injections. Participant observation also meant to see how people interacted with family members and friends, in group meetings, in supporting but sometimes tense social relations, and how they represented their groups to outsiders.
Finally, participant observation is a long-term methodological approach.
Speaking to doctors about their patient education sessions produced an altogether different understanding than subsequently waiting for months for such a patient education session module to finally commence. Moreover, the experiences of research participants were not static. I witnessed, for example, a woman’s perceived defeat of digressing from oral medication to insulin over the course of some months, and a man’s success of significantly improving his diabetes control and glucose levels within months of joining the self-help group.
My ethnographic data was collected in hand-written notes in a fieldwork notebook, sometimes jotted down while sitting in at meetings, often recalled from memory on a jolting U-Bahn carriage on my way home. These jottings stand in awkward opposition to many taped and transcribed interviews with health professionals; narrative interviews with patients were only recorded in field notes as they happened while cooking, eating, watching TV and taping would have disturbed the conversation or activity. However, (more egalitarian,) both interview transcripts (in German) and field note jottings (in German and Turkish) were typed up as extensive field notes in English. All research participants were already anonymised in these word processing documents.
Multi-sited ethnography and ethnographic network analysis?
As mentioned in the previous subchapter, participant observation in an urban setting required a certain patience; “deep hanging out” with informants (Rosaldo in Clifford 1997: 188) took a much more structured approach than in more small-scale environments. As life did not happen and was not observable in front of my doorstep, it entailed making appointments, travelling across a wide area, and often gaining only limited access to various settings. On the other hand, this “removedness” from an immediate, observable group or “community” offered the overview over a much wider network of people and groups involved. As fieldwork progressed, I became increasingly aware of the relations that connected individuals and groups to a larger network of involvement in Turkish diabetes care. While many doctors did not seem to know about the self-help group, most doctors who decided to participate further in this study were part of a medics’ society, which was closely linked to the self-help group. The self-help group held strong ties to a drug representative, a patient consultant, people from the German Diabetes Union’s migrant working group, local media and businessmen. NGOs and working groups worked together with doctors, and supported the self-help group. As mentioned before, while narratives of such interactions and engagements, at least at first, only alluded to such structures, participating in such events and observing relations uncovered what defined such structural arrangements. They were shaped by sociality, activism and collaboration as much as by personal quarrels, economic competition and hierarchical contestations.
As I entered more and more of these connections I started to explore the idea of a social network analysis (Scott 2000). It seemed a fascinating endeavour to attempt to map all these alliances, partnership, business contacts that make Turkishspeaking diabetes care in Berlin such an eventful experience, as well as mapping the private social and family relations that drew people with diabetes into participating in active illness management. At the same time I wanted to retain an ethnographic approach by not only visualising the connections but somehow qualifying them in terms of roles and domains, conflicts and loyalties. However, it soon became clear that trying to simplify such complexities in a visual, schematic and technical form was not possible, after all ethnography aims to provide “thick description”(Geertz
1973) rather than two-dimensional models. People held varied roles and relations and position themselves fluently within the socialities of diabetes care in Berlin. I chose to describe these socialites as Berlin’s field of Turkish diabetes care as it did not hold the technical and structured connotation of networks or currently widely used concepts such as “assemblages” (cf. Ong and Collier 2005). That said, “field” is an similarly contested category subjected to a longstanding critique that started with the Writing Culture debate (Clifford and Marcus 1986). Alerting to the methodological challenges of contemporary fieldwork, anthropologists increasingly acknowledged that fields are hardly “small-scale”, bounded or even confined to one site. Indeed this research project could have been a “multi-sited ethnography”17 (Marcus 1995) as the I did not follow research participants to these multiple sites, mainly for financial reasons.
migrant research participants led transnational lives, spending many months each year in Turkey, Berlin’s activists cited Gieβen’s research findings, the self-help group spoke at a conference in Hamburg, invited by the German Diabetes Union, and of course in Berlin not everyone was each other’s neighbour and there is no “Turkish community” bound to a locality. Choosing the terminology “field” should thus refer to both the organic metaphor (as opposed to technological assemblages or schematic networks) as much as to the much revised conceptualisation that challenges previous ideas of autonomous, bounded, homogenous or static units or environments (cf.
Coleman and Collins 2006). Chapter 8 describes Berlin’s complex and multilayered “field of Turkish diabetes care” and also provides a detailed discussion of the analytical choices.
More hurdles Finally, I had to consider my own position during this research. I had to ask myself in what way I was shaping interviews, conversations and representations. What did it mean that I was asking these questions, was interested in their group, opinions and experiences? I am a young woman, healthy, non-diabetic, slim, non-smoking. I am non-medically trained, yet academic, based at a prestigious university and perhaps publishing in international journals. I am German (but not a Berliner!), resident in Scotland and with a Turkish surname. While, during interviews with health professionals, some considered me as an ally, sharing a research interest or an educational status, others were sceptical about my anthropological background and research objective. Patients would find commonalities in our lacking medical background, my Turkish name, my struggle with a foreign language, my interest in diabetes, being a migrant myself in Scotland or because I happened to be the same age as many of their children. Others would assume medical expertise (I was writing a doctoral thesis), or view my German background, my non-diabetic status and acquaintance with many health professionals with suspicion. In any case I was an oddity to my research participants and power imbalances surely came into play, and not necessarily with me in a more authoritative position.
As narratives were inevitably shaped by my presence and interest, I had to explore settings, events and practices that were not quite as sensitive to my interests, or at least that would have happened without me and I had nothing to do with their construction. Therefore, it also seemed important to move from a narrative exploration to an observation of practices of diabetes management, and to also seek out settings in social everyday life that were not shaped by the ethnographer and the specific interest in diabetes. Having said this, my presence at group meetings or family dinners was, of course, significant. Perhaps I should cautiously consider the practices I participated in or observed, and therefore influenced to some degree, as performance. Although, of course, the idea of long-term ethnographic fieldwork is that the ethnographer hopes to eventually cease to be an oddity. The most obvious consequence of my position as a female researcher was that six out of the seven people that I could follow into their everyday lives were women. The only man had initially been concerned that his wife may not approve of an interview at their home.
As his wife became a regular in group meetings too and was close to my own age, we became friends and only then was I invited to their home. I only met the group leader at official events and we met for an official interview in a café.
On a final note, anthropological research always strives towards immersing oneself in the field and describing “a culture in its own terms” (Spradley 1979: 18).
This means learning the “native language” rather than merely relying on translators, as “language is more than a means of communication about reality: it is a tool for constructing reality” (Spradley 1979: 17). I had learned basic Turkish prior to fieldwork but needed to acquire more proficiency once in the field. Most of my participation observation happened in self-help group meetings, community events or family homes and were in Turkish. This required not only a certain level of general comprehension but also the knowledge of Berlin Turkish “colloquialisms” that did not concur with my language training in Istanbul. Therefore, I undertook a language course at a local Turkish “education association” (Bildungsverein), which mainly offered homework help to the community’s youth. For me, this organisation did not only offer a more localised language training but also insights into my teacher’s Alevi community and his history of political asylum seeking as a socialist student.
Most formal interviews during fieldwork, however, were held in German, some in a mixture of German and Turkish (at times with the little help of my dictionary or some informants’ family members).