«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Participants: others involved (media, working groups, NGOs, private sector) Within the area of Turkish migrant diabetes care in Berlin I had developed a whole range of contacts at that time. Almost every month, Yılmaz and his self-help group hosted big information events for the Turkish community in Berlin. Set in turn in the town-halls of two Berlin districts, Turkish migrants were invited to listen to talks on diabetes (often with seasonal topics such as “with diabetes on summer holiday and diet” or “fasting and diabetes” but also on cholesterol or hypertension, or the healthcare reform and social benefits). A consultant for Turkish-speaking patients, and some Turkish doctors supported the group in presenting to an audience of around 70 people. The patient consultant Hilal, a Turkish-origin nurse and academic researcher, soon became a key informant – and friend – who often acted as a mediator when my explanations of my role as an anthropologist created confusion.
Those doctors of the Turkish medics’ society who appeared regularly for talks at these events also turned out to be more available for in-depth interviews in their own surgeries.
Also part of these events’ regulars were a Turkish optician who offered free eye check-ups, a Turkish drug company representative who offered free blood glucose tests (and provided the group with free glucose meters), and the women of the group who sold sandwiches, tea and coffee. The drug rep also stepped in to conduct small group sessions at those rare times when Yılmaz could not attend, and he also provided the group with free blood-glucose meters and information brochures.
Yılmaz would also regularly appear on local Turkish-speaking TV and radio, with whose producers he was well acquainted. This was part of Yılmaz’s effort to advertise for these events and recruit new members for his self-help group. Also he saw this as another way of community outreach to disseminate information and raise awareness. Similar “shows” were done by members of the Turkish medics’ society.
As I was interested in the content of such “messages to the public”, I could accompany Yılmaz to appearances, and the presenter of these TV programmes provided me with tapes of past shows.
Finally, there was a whole range of individuals who were active in the field of Turkish diabetes care in Berlin who were available for interviews. I met the project leader of a local NGO, a working group of the German Diabetes Union, clinical researchers, and got in contact with two of the many Turkish nursing services that has sprung up in recent years to provide elderly Turkish migrants with “culturally appropriate” care in a foreign country. Aside from interviews with service management, I could spend time in a day care centre and chat with personnel and some elderly on their experience with diabetes.
On terminology: Turkish Berliners The German context makes little reference to the category of “ethnic minority” and I try to avoid this terminology. Germany is not alone, with France, for example, only registering nationality rather than identifying its population in terms of race, ethnicity or religion (Delphy 2005: 231). Delphy (2005: 230) argues that this approach is rooted in racism rather than avoiding racism as it is claimed, as, in her opinion, it is only North African origin French that are habitually ascribed the extra label “second generation immigrants” and thus rendered “alien”.
Ascribing a certain “ethnicity” to people who immigrated to Germany from Turkey seems to harbour similar contention and contestations. Rather than subsuming this whole migrant population as one ethnic minority, the most apparent distinction should be the division of Turks and Kurds (in USA, commonly and unproblematically Turkish-Americans and Kurdish-Americans; Mandel 2002: 362).
Having said this, Turkey is a multiethnic nation state with far more than these two ethnic groups. In fact, there are over 20 linguistic minorities in Turkey and considering religious sectarian differences one could count more than 40 distinct groups (Goldberg et al. 2004: 125). Turkey’s vehement (and often violent) nationstate efforts to favour nationality over ethnic belonging makes such an endeavour of identifying ethnicity an even more sensitive issue.
“Ethnicity” in its academic use has undergone several reconfigurations, conceptualising notions of separation from other groups (e.g. see Barth 1969), understanding ethnicity as political interest groups (e.g. Cohen 1974), as “sets of relations” produced by “specifiable historical forces” (e.g. Comaroff 1992: 66), or as a social “mapping enterprises” (Banks 1996). Mandel (2002: 363) casts doubt on whether “ethnicity” is always a fruitful analytical approach and if there are not alternatives to understand such social relations. Gerd Baumann’s (1996) “community study” of multi-ethnic Southall in London is a good example for such a critical use of such terms as “ethnic minority” or “migrant” or “Muslim community”. He describes social interaction and relation between groups, whose boundaries are fluent, and distinctiveness or membership contextual.
I agree with Mandel (2002: 365) that “ethnicity” is not necessarily a helpful concept, neither as an analytical category, and even less so as a colloquial truism. In this thesis, I often refer to my research participants as migrants. The migrants I met were mostly women, but also men, various ages, different class, and ethnically and religiously different background. They share being born in Turkey – some are still Turkish nationals, many own German passports. Most would not consider themselves German, despite their German citizenship. What unites them are their “migratory” lives – a certain transnationality (Brettell 2000: 102), insofar as they embrace living in both countries. They have settled in one and spent most of their lives there, but equally stayed connected to their home country where they maintain social ties, are politically active, for example participating in elections, or economically active, investing in Turkey, for example by owning property. This seems to happen in very eclectic ways, not a clinging to a lost past but a very present shaping of life. One of my research participants told me that they owned a holiday apartment – not in her birth village but in a much more exciting Aegean coastal resort. I also use the terminology “Turkish-origin” in this thesis, especially for those research participants whose background I did not get to know and who are younger generations with often very different expressions of identity.
There is no unifying terminology that all of my research participants used.
Academics and health professionals referred to people of migrant backgrounds or Turkish-origin, many of my research participants simply called themselves Turks.
The only term they all seemed to share was to call themselves Berliners – perhaps in opposition to me, the temporary resident, who had to be shown around, given repeated directions, and tips on public transport.
2.3 Reflections on study design, ethnographic data and ethics
The research participants included individuals and groups, patients and health professionals, those experiencing diabetes first hand and those who are actively engaged in diabetes care. I encountered them in many different settings, sometimes private homes, often public clinical places such as hospitals or primary care practices and civic places such as town or conference halls. Hence, various research methods were selected in the study design. Here, I am reflecting on these methods, the kind of ethnographic data they produced, and their utility in establishing my arguments.
Anticipating the time constrains in clinical settings, I planned to conduct semi-structured interviews with health professionals. To complement such accounts, educational brochures they gave out to patients, medical congresses they attended and public talks they gave, were considered. First encounters with patients and their experiences of living with diabetes were expected to happen in similar interviewbased fashion, less stringent perhaps in narrative explorative interviews, but nonetheless in an initially formal setting. Reflecting on this early ethnographic data and what kind of questions they answered produced some unexpected results. The fairly standardised interviews with health professionals have yielded only limited utility in terms of their insight into their patients’ lives, attitudes, expectations, and motivations. Many accounts seemed simply limited, often ignorant or cautious.
However, speaking to more and more doctors, getting to know their professional societies and hearing their public talks provided me with a window into their involvements and the political and moral economy of local clinical diabetes care. The patients’ ideas about diabetes and their illness narratives, on the other hand, struck me as surprisingly clinical. As my main access was a self-help group, I realised I spoke to a medicalised minority of expert patients. Only when turning to practices, the “doing diabetes” that they recalled and rehearsed so diligently in their group meetings, in participant observation, much more interesting questions could be answered – even those as to why narratives were so clinical. Exploring such active and conscious practices of diabetes management finally also provided answers to my ethical conundrum. As research ethics were unregulated in the German fieldwork setting and seemed to demand utmost scrutiny by me, I discovered that questions of informed consent and conscious participation not necessarily have to be answered on behalf of research participants.
Interviews, illness narratives and explanatory models Interviews with health professionals presented two main challenges. Firstly, approaching medical professionals in their clinical settings meant that I was faced with severe time constrains. Often I was only granted the timeframe of one or two average patient consultations, which meant that an open-ended interview style had to be abandoned for a more structured approach that should, nonetheless, allow for a certain explorative investigation. Secondly, healthcare professionals – and that includes NGO workers or nursing service managers – all shared an academic education and background that resulted in certain study design expectations. Mostly unfamiliar with ethnographic research methods, many envisioned a formal interview structure with set questions that could be reviewed prior to the interview appointment. I decided to meet these expectations by composing a list of guiding questions for semi-structured interviews which could be abandoned on the spot in case more interesting themes emerged or the timeframe got extended. These guiding questions were shaped by the answers that were given in initial interviews at the beginning of fieldwork. Moreover, it was also common for my interviewees to seek statistics for validation of their observations and experiences, excusing these as merely anecdotal and thus quoting the previously mentioned studies on child obesity (Delekat 2005) and diabetes prevalence (Laube et al. 2001). I embarked on my own exploration of local statistical data. Finally, I was exposed to numerous information materials on diabetes in clinical settings. I was mostly interested in Turkish-language material. This ranged from merely translated German brochures (often with the cover photo of an agile blond couple on a Nordic Walking outing) to more or less ambitious attempts to create information that focused on Turkish diet and, for example, showed photos of Turkish people and meals.
Those research participants who were living with diabetes and most of whom I had met through the diabetes self-help group were providing me with a very different research environment. Long visits to their homes allowed for open-ended narrative interviews, which were often merely a series of conversations on reoccurring topics: their experiences as Turkish migrants and as diabetes patients. In first meetings they told their migration stories quite chronologically in biographical interviews, which was often assisted by family photo albums and maps of Turkey to show the location of home villages or towns. Such albums contained recorded life times of Turkish childhoods, early years of settling in a new environment, annual car journeys through Europe for visits “home”, and various family events in both countries – Turkish weddings of siblings, children’s first days at school, grandchildren’s first birthday parties.
In order to explore my informants’ experience with diabetes, I had initially planned to employ classic medical anthropology tools. As there was no pre-existing anthropological exploration on individual “Turkish migrant” concepts of diabetes, I anticipated following Kleinman’s (1980) framework of “explanatory models” (EM).
Kleinman (1980: 104-9) introduced the concept of EMs in order to grasp different ideas and practices concerning a particular event of ill-health. He suggested that one should ask the following questions: What is the presumed cause of ill-health? How are time and mode of onset of symptoms described? What is the pathophysiology of the illness? Which course will it take? Which treatment is being taken? When finding the answers one can elaborate where perceptions between official biomedical models and local understandings differ. Kleinman’s EM framework can elaborate how people explain the onset of their illness and how they identify this onset. Furthermore it can shed light on the kind of treatment which is pursuit and if this therapy is actually preferred.