«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
“Half of the ward is toilettes, it’s ridiculous really but that’s according to regulations.” The bathroom has a big bathtub and Ayşe explains: “You must know the small and narrow bathrooms of Berlin’s old buildings. There is no chance for family members – or nursing staff – to properly shower these elderly people. We can bathe them here once or twice a week.” Then we reach the smoking room of the ward – where we find a very old lady wearing a long headscarf and a baggy dress hanging on her tiny, skinny body. She smiles at us as if we caught her doing something naughty and greets both of us with kisses on our cheeks. Ayşe tells me that the lady is in the last stages of Alzheimer’s. Finally, Ayşe shows me the kitchen in which they prepare breakfast and lunch each day. Traditional Turkish food is cooked and all ingredients are bought at a local Turkish store. Lunch is about to be cooked and the counter is full with bags of food, tins, fresh vegetables, and meat.
“We tried to offer our patients with diabetes different food but it wouldn’t work out”, Ayşe tells me. “There would be a huge row, ‘but he got this…but why did she get this?’ Patients would also trade food and we would have not much control over what they are eating. So we decided to cook the same food for everyone but low-caloric, low-fat, low-salt food. That’s good for everyone.” Back in Ayşe’s office we chat about the success of her nursing service.
“Everybody told me not to do it. They thought that there is no demand, no market for this.” She tells me about the “myth of the extended family”, and how many people warned her that attempts of others to pull off such a service had failed. “I couldn’t hear it anymore. I can tell them why they’ve failed. All these people who think it’s enough to employ Turkish staff. As if it’s enough to speak the language. You need qualified personnel!” She’s been successful for eight years now and the appearance of more and more such services confirm her hunch that there is a market for “cultural-specific nursing care”. I ask her how she recruits patients. “It’s all through the home care service.
Without the home care service the day care centre wouldn’t run.” There is some word-of-mouth advertising but there is no help from family doctors.
In fact, she complains that there is no co-operation at all with most doctors.
She doubts that some of them actually have a special diabetes qualification.
“Some just call themselves ‘diabetes focussed practice’. Nobody really checks on them. I already had to report doctors for malpractice. These doctors think they know it all best but really it’s about money. Patients are put on certain diabetes medication in the hospital and when they are back home their family doctor thinks he knows it all better and changes the medication. The worst is… Do you know Dr. X? I get angry just thinking of him. I have to deal with patients here who suffer from sever dementia and he thinks he can give them an insulin pen to handle themselves. They should hold the pen to their ear and listen to the clicking …one, two, three, four. I mean, that’s so delusional to think they could do that. I try to get doctors on the phone to speak to them but they wouldn’t take a little bit of time to discuss these patients with me. I mean, I don’t earn much money through prescription, but we have to do the care, we know the patients, see them regularly and know what they can handle.” Apparently many doctors do ask her to do a daily blood sugar reading for them, which they then take and sign off as their own.
I ask her if there is a difference between Turkish-origin and German family doctors. “They are all the same. It’s all about money.” I take the opportunity to hear her opinion on the special health insurance incentives for diabetic patients. “Has any patient ever received any extra care? I don’t think patients profit from this system, just health insurances and the doctors.” When talking about how doctors don’t provide patients with enough information she tells that she also does diabetes education sessions – and used to invite diabetologists. She stopped doing that though as these sessions seemed to be too difficult for her patients. They use all this jargon and explain everything in too complex ways. “This bread unit nonsense. Some nutritionists came up with this and cannot imagine that people without their training might struggle with these concepts.” I tell her about the self-help group and say that people seem to like that they can learn about diabetes bit by bit – from other patients not doctors. To my surprise, Ayşe has equal resentments about the self-help group. “I have bad experience with this group. It’s all about money and profit for them, too. They cooperate with certain nursing services because they get money for advertising them. I know these services. They advertise to provide free service and then charge the patients afterwards. And these other nursing services use un-qualified staff – as if it’s enough to provide these patients with someone who speaks Turkish.
Some of my nurses do not speak Turkish and the patients love them anyway, because they do a good job.” [Field notes 12.02.2007] While the chapters of the previous section were about the individual experience with diabetes – the patient side of practically engaging with the management of diabetes in the everyday – this next section aims to explore the community experience with diabetes. Here, “self-care” is investigated as a societal response of managing the burden of diabetes in one’s “community”35. In the previous section, self-care practices are, of course, also inherently social practices, but they focus on sick bodies. For example, dietary recommendations have to be implemented in family life or are challenged by social values of hospitality, yet their purpose is to maintain individual diabetic bodies. This section, then, is not about health, illness or sick bodies per se; more precisely, it is not about diabetes as a bodily or emotional experience. Rather, I will argue that diabetes is also collectively experienced by a population group and a starting point for social, political, economic and moral engagement.
Berlin, as I encountered it, with an increasingly growing, stratified, diverse and challenged but also increasingly confident and settled Turkish-origin population, turned out to be a site of multiple and diverse responses to diabetes. Chapter 7 sets out to address this communal experience of diabetes. There is a substantial number of Turkish-origin practising healthcare professionals who are organised in various professional groups and societies and show particular interest in diabetes among “their community”. Recognising that diabetes is a burden to this population group led to the initiation of a self-help group that also organises community information events. Such collective, organised response can be understood as biosociality or bioactivism. Unlike Rabinow’s original conceptualisation, however, biosociality is not born out of biotechnologies and their challenge to patient’s biological identities (Rabinow 1996a); biosociality or bio-activism, here, has different motivations.
Adding to these social activities, further interactions and involvements around diabetes are local TV health programmes, events and programmes by local working groups, charities and NGOs and the above mentioned rather fast growing market of nursing care services. Chapter 8 will explore who is involved in this The term “community” is a problematic one that a large body of literature discusses. There is, of course, not one coherent, bounded “community” of Turkish Berliners. Contrary to popular perception, they cannot be located in specific spaces, and they are stratified in generations and socio-economic classes. There is not even a more or less unified way of referring to their belonging or identity. While some doctors would highlight the expression “German Turks” or “Turkish German” (and feel strongly about respective terminology), the drug rep would talk about “my folks”, while some NGO workers would frequently use the English word “community” (instead of the German Gemeinde) to refer to a population group or ethnic minority rather than an actual physical community. I tend to follow the latter example and write about “community” or “communal” in order to capture when my Turkishorigin research participants referred to a collective “us” that should refer to the Turkish migrant population in Berlin.
biosociality. There are not only patients-turned-activists but the politics of informal diabetes care add many social roles to people’s lives. I will argue that this local field of informal diabetes care is a site of both opportunities, support and co-operation and “conflicts, tensions, resentments, competing interests and power imbalances” (Morley 1999: 4, on micro-politics). The following section will thus focus on junctures of social participation and “community self-care”, profession and profit, co-operation and competition, as illustrated in the above field notes. The local social, political (civic) and economic response to the presence, burden, or even threat of diabetes is another important part of the story that this thesis sets out to tell; it situates the thesis in a wider body of “biosocial” literature and explores in what way diabetes challenges and reshapes communal experiences of Turkish Berliners.
Chapter 7: The communal experience of diabetes
In many ways this thesis is an account of privileged patients. Most of the research participants diagnosed with diabetes were, of course, demographically speaking anything but privileged with their largely low socio-economic and educational status and marginal position as mostly elderly, unskilled migrants with limited German proficiency. And yet time and place offered a departure from such demographic disadvantage. Berlin, in its first decade of the new Millennium, is a vibrant place with a large Turkish-origin population that occupies by now not only the segment of society of low-paid, unskilled labour with poor housing but has entered academic, professional and political positions, initiates NGO, charity and social work, and shapes media and business. Furthermore, health and healthcare seems to have become the focus of much present-day political and public concern. The self-help group of Turkish-speaking diabetics is a poignant example for such local initiative and also illustrates that illness is, far from being a mere individual and private experience, also a communal encounter of suffering, coping and managing that instigates social participation and interaction.
In fact, as much as the diabetic body becomes a reason for sociality, such sociality is often quite separated from the embodied, physical experience of diabetes.
By that I mean that collective action and interaction can have a therapeutic element for individuals and the communities in which they are living, but it can also be an opportunity for social participation beyond practices or concerns around health. The following chapter is about the communal participation around diabetes care. Diabetes had been, so to speak, diagnosed by the Turkish migrant population in Berlin as a communal problem that required control and self-management. On a more individual level then, and as alluded to earlier in Chapter 6, diabetes in its social form of selfhelp had become an opportunity to manage life and participate in life. Social interaction had become central and prominent in the lives of the self-help group members but such social interaction also involved many who did not share an immediate physical experience of diabetes; lived experiences of diabetes can be something else and might not only concern diabetes patients. Notably, my account departs from other literature on biosocialities in that the origin of social activity and communality was not rooted in technological advances that shape society in new ways. This is an account of a “low-tech” sociality, a new social movement, nonetheless, that assumes communality stemming from a biological concern.
However, this emerging sociality is not due to new techniques or technologies that redefine how people identify and organise themselves, for example as explored by Rabinow (1999). Both treatment and social activity is inherently low-tech, there are no fancy diagnostic tests one would advocate for, no genetic testing for susceptibility, and no virtual community of diabetics. This is the account of a biosociality beyond biotechnologies but emerging out of a specific social, political and economic context.
7.1 Local self-care: diagnosing and healing the community
In this subchapter I outline how diabetes had become a pressing issue in the Turkish migrant population of Berlin that sparked social, political and economic activity and involved individuals and groups, professionals and laypeople, old and young, the poor and middle classes – Turks and Germans. At the centre of my attention to such communal activities (not necessarily matching all activities happening in Berlin) lay the self-help group and those involved and allied with the group or challenged by it.
Through the lens of this communal self-help activity I aim to acknowledge the collective social experience and local political economies around illness and healthcare. I argue that diabetes has been diagnosed as a social problem within Berlin’s Turkish population by local medics, politicians and (national) academics, and treatment has been sought in active engagement and self-management, by filling provisional gaps through informal care.
Excursion: Why do Turkish Berliners have diabetes?