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«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»

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People involved held roles as: patient, lay person, consumer, client, community member, doctor, nurse, specialist, academic, researcher, expert, consultant, teacher, businessman, drug representative, manager, leader, politician, activist, NGO/charity worker, nutritionist, podiatrist, diabetologist, nephrologist, cardiologist, eye specialist, optician, diabetes consultant/assistant/nurse, patient consultant, diabetes union working group member, self-help group member/leader, medics’ society member. They moved and interacted in various sites: the family doctor practice, various other specialists’ practices, clinics, town halls, wedding halls, lecture halls, private homes, university, TV studio. These sites were private or public spaces, clinical or non-clinical, civic or commercial. Finally, people met at

these places for various events that required respective roles, events such as:

consultations, check-ups, group meetings, community events, talks, TV and radio programmes.

While it is easy to compile such lists, trying to ascribe research participants neatly to such roles or particular settings is a more difficult exercise. Yılmaz was the self-help group leader, a management and administrative position he occupied confidently after years of self-employment. When he was approached by the medics’ society to take on this role of the leader, however, he was insecure as he considered himself a layperson, a non-medically trained person that could not possibly inform anyone else. “But I’m not a doctor!” he exclaimed when first asked to step up to the challenge. He was, indeed, a patient, someone living with diabetes and therefore ideally suited for a leading role in a self-help group. Yet had he not acquired any special knowledge about his illness. Accepting the task he turned into a committed student, undertaking numerous training courses that turned him into an expert of his illness, albeit being denied formal qualification in form of a certificate that would only be given to someone with a nursing or nutrition background. In his leading role in the self-help group he used this expertise and passed on his knowledge as a teacher and a consultant for both outsiders and members of the group. Campaigning for his group made him become a media presence, regularly appearing on local TV and radio, and leading community events both as an expert speaker and as an organiser of talks by medical and social law specialists. As an activist, he strove to both expand the reach of his group and to raise awareness about diabetes in his community. As a well-known community member, he was successful at this endeavour, being an outspoken and sociable person that had already known many Turkish migrant families in Berlin through his door-to-door sales job. His background as a businessperson also became handy in his administrative role for the self-help group as this charitable organisation nonetheless had to engage in extensive fundraising to cover event costs for speakers and venues as well as running costs through the year.

In short, Yılmaz was a layperson, diabetic patient, student, teacher, expert, consultant, activist, manager, organiser, leader and businessperson – depending on settings, how he positioned and represented himself and was regarded by others.

Such positioning happened fluently and situationally, occupying roles sometimes at once and inseparably, or purposely and deliberately selectively.

I understand that this is not a new insight into how people take on social roles in their everyday lives; I can be a PhD student, activist, friend, wife, musician – at the same time, or depending on situations, sites or domains. Yılmaz, for example, is of course also a father in his private life, a salesman in his work life, and so on. What I am suggesting here is that diabetes adds equally plentiful social roles. Within this domain of health/illness most anthropological exploration would ascribe him solely the role as a patient, or alternatively as a self-help group leader and perhaps activist. I suggest to widen the scope and, as described above, add that the administrative side of the self-help group required Yılmaz to adopt the roles of manager and businessman, and that the importance of information to the self-help group demanded from Yılmaz to be a teacher and consultant (and as a prerequisite a student of such medical knowledge).

Moving on from Yılmaz’s example, such varied and fluent positioning in social roles applied to most of my research participants. The doctors seemed to occupy equally plentiful and often seemingly paradoxical roles. Their roles as family doctors were a complex job description in itself, being carers, healers and consultants for their patients, as well as businesspeople, managers and trainers in their highprofit practices with often extensive staff. Some were researchers for their academic career, conducting studies in their own surgeries, writing papers and giving talks.

Many of the Turkish-origin doctors were active in their medics’ societies, as members, bookkeepers, secretaries or board members. Belonging to groups could be political, some doctors were actively engaged in minority groups such as the Alevi community. Some doctors were, then, prominent public figures, assuming roles of local politicians or frequently appearing in local media to inform and comment on health issues but also general community concerns.

There is also the drug-representative Sedat. At first sight he represented “big pharmaceutical industry” to me that had a strong presence at the big information community events which the self-help group frequently organised. There were often various drug companies present at these events but Sedat’s booth had always a central position. His company was mentioned as the main sponsor during introductory speeches, and Sedat’s brochures, pens and free testing were always very alluring to every attendee. The self-help group also got free meters for its members and used the meters to recruit new members. Vouchers were handed out that event attendees could redeem at one of the small group meetings if signing up as a new member. Sedat talked much about the high prevalence of diabetes among this migrant population group and what a great market of potential clients Berlin was.

Having said this, Sedat did not only consider himself a businessman. He also represented himself as a member of this population group and felt quite strongly about “doing something for his folks”. Sedat donated much of his private time and tended to help and stand in when Yılmaz could not hold group sessions. He was a devoted teacher and consultant much liked by the members of the self-help group, giving members information about diabetes, insulin and drugs (not surprisingly) but also everyday life issues. During a session in early summer Sedat ran the group through the scenario of a wedding in Turkey. We had to come up with all the issues to which a person with diabetes would have to pay attention. Much food, for example plentiful sweet fruit and sweets, and the stress of heat or, for example, being the concerned bride’s mother, would elevate blood glucose levels quite significantly. On the other hand, he made us tease out that much dancing, sweating and alcohol could also lower blood glucose levels during the course of this wedding party. Sedat also used to assist Yılmaz with teaching material, for example clinical numbers and risk diagrams, and helped the group with administrative issues and fund raising. I met the drug-rep Sedat, therefore, not only as a businessman, but also as a community member, a teacher, consultant and confidant to the group, and thus in a way, even as an activist for the group. In any case, he was more than simply a representative of the pharmaceutical industry.

To pick a last example of complex roles and positions, there were the nurses.

Here I not only struggled because I found many roles within the category of nurse, but also that being a nurse meant various job categories in Berlin’s Turkish migrant diabetes care. There were those nurses who held positions as practice nurses, a badly paid and low-qualified job in Germany that is often done by young women with low school education who often leave after several years to change career to better paid jobs or for marriage. Yet the nurses I got to know had made an effort to gain extra qualification, being trained as diabetes nurses and often took pride in offering education sessions in their parents’ language that took their patients’ needs into account. They were carers, experts, teachers and consultants. These nurses held difficult positions within the hierarchies of the surgery; they were young, low-skilled women who, albeit being experts of diabetes, were ranked well below the older, male doctors. Indeed I always first heard from doctors, during an interview or a public lecture, about their efforts of Turkish-language education sessions. Visiting these sessions then, these doctors were absent while their nursing staff practised what their bosses had preached. On the other side of the spectrum was, for example, Hilal, my good acquaintance and informant, the patient consultant. She was trained as a clinical nurse (ranked much higher in the German healthcare system than practice nurses) and held an extra Master’s degree. Such university qualification is unusual for nurses in German and she aimed for an academic career, preparing her PhD proposal at the time when we met. She was another kind of expert than the diabetes nurses, and in her role as a patient consultant she worked fairly self-organised within her nongovernmental organisation, and donated much of her time to establish co-operation between interest groups, lobbying for better migrant health provision and giving public talks. While being a nurse, consultant and activist, she was also a confidant and support to the self-help group, helped organising community events and helped out at the small member group meetings. Finally, there were the entrepreneurial nurses who started “cultural-sensitive” nursing services. These services seemed to be founded and headed by determined women who started out with the low qualification of nursing and used their business drive to employ Turkish-speaking staff and provide “culturally-appropriate” care and food for elderly migrants. Within a few years a thriving market of such Turkish care services had developed as well as a fierce competition between these providers.

Certain roles would also not confine to certain sites and events, and sites would not necessarily match their purposes. The self-help group met weekly, quite appropriately in a clinical and academic space, the small lecture hall of a private hospital. This space, however, was made available by a doctor outside the medics’ society but who was active in a non-governmental working group for migrant diabetes care. Although he worked at the hospital, the arrangement was not entirely official, not formally accepted but tolerated by hospital administration, and therefore for free. Community events did not take place in a clinical but a civic space, the town hall, yet had to be hired commercially for a hefty fee. At the event, then, Sedat was indeed the drug-rep behind his booth, but he could be a consultant at the same time, giving some tips about diet to a self-help group member who stopped by to greet him. A doctor could be the event’s speaker but viewed by others as a businessman who not only requested a fee for his appearance but was also suspected to merely attend in order to advertise his practice. This example also reiterates that sites and roles might be taken on purpose, others by chance or unconsciously, or positioned differently by others. The doctor might represent himself as a philanthropist but be suspiciously viewed as an entrepreneur.

As confusing as above attempts to outline the complexities of roles and sites and their positioning and relations might seem, this is exactly what I aim to convey here. That it is a challenging endeavour to map these interactions, spaces and participants in coherent structures or orders. They are inherently linked to each other – after all, social roles are what we present or perform to others or how others perceive us (Goffman 1959) – but the question is how to describe such sociality. My aim was to expand the scope of many biosocial accounts that only ascribed limited roles to participants of biosociality.

8.2 Ties and tensions in diabetes care: economics, politics and ethics atstake

If the field of Berlin’s Turkish diabetes care can be characterised by diverse participants who represent multiple roles and occupy fluent and complex positions in interactions and transactions both as individuals and groups, why is it significant to alert to such complexities? What is at stake for a patient/expert/activist/entrepreneur?

An immediate answer would be that this lively field of Turkish diabetes care was not a harmonious one, nor one guided solely by diabetes provision. Those involved knew each other, and many actively co-operated with each other, in which case each new encounter during my fieldwork often automatically yielded further contacts. On the other hand, interactions between participants and groups could be tainted by distrust and conflict, and my own connections with some would prove suspicious to others.

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