«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Again, self-management cannot only be a clinical therapy but also a political and social remedy. While the diagnosis was largely in medical hands, the treatment of diabetes as a social problem of a population group was diverted – like in the case of diabetes treatment itself – to the care of the patient, to the self-management of this problem by the members of the affected population group. Depending on the positioning of Turkish-origin doctors as such community members as opposed to observant or privileged outsiders, the doctors became themselves “patients” that needed to take the care into their own hands. “We had to do something for us”, would paraphrase their motivation. Such quasi “self-care” undertaken by local medics included individually offered patient education sessions in Turkish that accommodated Turkish foods and social lives in order to offer an education their patients would not be able to access otherwise. On a group level this meant the establishment of a professional society that would, on the one hand, protect their own interests as professionals who were in some ways marginal to the mainstream system and by and large caring for a deprived and disadvantaged patient group without extra support. On the other hand, the society was a self-care response to offer adequate (including native-language) healthcare to this patient group in a more institutionalised, structured and therefore ubiquitous approach.
Independent of the positioning of local Turkish-origin medics and their imagined and lived experiences of diabetes as a communal burden, their initiation of a patient-led self-help group truly based self-management in the hands of the “community”. The diagnosis of the high prevalence of diabetes among the Turkish migrant population and Berlin’s inadequate formal healthcare response was followed by the fairly standard and perhaps unspectacular enlistment of self-help and voluntarism (Robinson and Henry 1977: 8). In other words, the “community” can be helped, if not healed, by filling such provision gaps through self-organised informal healthcare provision.
In the early 1990s, one of these medics’ societies earned a grant from the Berlin Senate to tackle the alleged threat of HIV/AIDS within the Turkish population of Berlin. The medics set up a walk-in clinic that offered both treatment for HIVpositive patients and counselling for their family members. Members of the society told me that they had enough funds to employ four fixed-term staff that also provided a general service of native-language healthcare. Many doctors affiliated to the society donated their time and energy; there was also a nutritionist, two practice nurses, a sexual health consultant and a regular parents’ consultant. Before long, a much more urgent health issue emerged that was not anticipated by the Berlin Senate: type 2 diabetes (and other obesity related chronic conditions). The medics reported a high prevalence of diabetes among their patients and saw a demand for information on this issue that affected and concerned so many people in their community. They decided to organise an awareness raising event and an affiliated pharmacist offered his large pharmacy to host the gathering. They soon realised that the space would not be big enough to accommodate the large audience that had turned up. Another meeting was planned, this time in a wedding hall that could hold a hundred instead of twenty people, and these information events soon became institutionalised.
It was around this time, in the late 1990s, when funding by the broke city Berlin became scarce that the medics’ society searched for alternative ways to provide care and support that would require less of their own resources and time.
Patient-led self-help groups are a common response to such structural provision gaps (Robinson and Henry 1977), and the medics sought out a non-medic board member of their society – a local and well-connected businessman – who was himself living with diabetes to lead such a self-help group of Turkish-speaking diabetics. The group’s leader Mr Yılmaz narrated that he was at first hesitant to take on such a role, “after all I was not a doctor, but Dr. S said that he was not born a doctor either” (field notes 15.03.2007). With the initial help of the medics and much immense personal investment of time and money Yılmaz underwent training by the German Diabetes Union in order to qualify as a diabetes consultant and later he took courses elsewhere, also in Turkey. Yet he was denied the official qualification certificate as he lacked the initial medical training in either nursing or nutrition that is usually requested for diabetes consultants. Doctors told me that this represented “typical local politics” of Berlin’s branch of the diabetes union that did not like to see the conservative hierarchies challenged.
The bureaucratic journey to achieve official recognition as a group was equally problematic. The first three years the self-help group only operated as a loose group, with only a few interested people attending its first meetings. During the first year there were fourteen people actively involved, including four patients, a pharmacist, a lab assistant, Yılmaz and some doctors from the medics’ society, and the first event was attended by forty people. The medics planned to register the group as a separate association but putting together the charter of the association proved difficult and registration failed. The two groups apparently fell out which might have had to do with the development that Berlin’s bankrupt senate had by then ceased much of the funding it had invested in its better-off times, and it seemed that the two groups, the medics’ society and the self-help group, had become competitors rather than partners in their provision of alternative diabetes care. Yılmaz then took it into his own hands to write the articles with the help of his (German-born and German native speaking) daughter and got the association finally registered in 2003. With official recognition the group started to provide the community with their own information events and four years on, when I met the group, Yılmaz told me that thousands of members were registered.
The self-help group offered a forum to give advice, support and above all information and education that formal healthcare failed to deliver. This failure, incidentally, included many of the medics, as I mentioned in Chapter 4. These doctors might have shown enough initiative to draw up more adequate education plans, translating brochures and compiling Turkish slides and other educational material, yet often they could not actually deliver these efforts efficiently due to their own resource and time constraints and their patients were left to their own devices.
The self-help group stepped in to offer personalised, detailed and more compassionate education. Moreover, they disseminated information and raised awareness in the wider community by taking over most of the community information events that the medics’ society used to host in wedding halls. Yılmaz also often replaced the medics’ society as a regular appearance on local Turkishlanguage TV and radio to inform about diabetes, its care and their service.
This is not to say that the medics were not involved anymore in this kind of communal response. In fact, a range of actors and groups showed an interest in locally managing diabetes care in activities that could all be subsumed as informal healthcare provision. Involved in this kind of informal network of diabetes care were furthermore nurses who were trained as diabetes or patient consultants, some of whom were members of a special migrant working group of the German Diabetes Union. Other doctors were part of this group rather than the medics’ society but surely most people involved more or less knew each other or of each other. These included people from health insurances and drug companies as the Turkish migrant population is regarded as a big market – rather cynically due to their high illness rates. This is not to say that those individuals who represented insurers or drug companies did not genuinely care for these patients who they regarded – being Turkish-origin themselves – as part of “their community”.
Collective illness burden and biosociality Summing up, diabetes is not only an experience of illness, sick bodies that require health practices and bodily maintenance. I argued that diabetes is also collectively experienced as a communal problem (cf. Mol 2008: 57ff). Diabetes is communally both suffered and tackled and such social experience could be understood in medical analogies. Diabetes was diagnosed by local Turkish-origin medics (alongside some scarce epidemiological statistics) as a problem common in their specific Turkishorigin patient group, and causation was identified in both personal failings of beliefs and practices of this population group, namely contemporary unhealthy lifestyles, and structural adversities of deprivation and marginality. The medics positioned themselves fluently as both “outside” health professionals and observers and “inside” members of the very community that is burdened by such ill-health and inadequate healthcare provision. Treatment of this communal problem is, then, sought in informal solutions to address such gaps in provision and manage this challenge. Just as diabetes is treated in terms of self-managed diabetes control, the “community” is treated, if not healed, with a similar self-care approach. The Turkish-language selfhelp group follows its self-evident principal of helping each other and helping oneself, and offers education, information and support to a population group that is inadequately accounted for by the formal healthcare service.
The recognition of diabetes as a collective problem invites reference to Rabinow (1996a: 102) who envisioned “groups whose members meet to share their experiences, lobby for their disease, educate their children”, and “[...]have medical specialists, laboratories, narratives, traditions, and a heavy panoply of pastoral keepers to help them experience, share, intervene, and ‘understand’ their fate”.
Rabinow’s notion of biosociality describes well some of the motivations of the selfhelp group. A social group formed based on the collective vulnerability to diabetes.
What makes Rabinow’s biosociality stand out is that sociality is not just founded on the basis of an illness but how this illness is (re)imagined. For him, it is the innovative and challenging character of biotechnologies, the “life in the making”, that re-imagines biologies (Rabinow 1996b: 2). Rabinow imagined such groups to be formed around chromosomes and genetic markers; Rabinow’s biosociality stems from biotechnological intervention that puts our conceptions of our identities and bodies in question. Social movement then is both guided by technology – for example in Internet chat-rooms as virtual support groups – and its aim is about mastering such technology, lobbying for access to diagnostic tools or treatment or raising funds for further research. Rabinow’s legacy therefore explores further biotech avenues. Gibbons (2008), for example, described how molecular research into genetic breast cancer markers invigorated and redefined patient activism of “BRCA carriers”.
Lock (2008), accordingly, aimed to investigate such changing identities of “APOE carriers” with genetic Alzheimer’s susceptibility. However, she concluded that such self-perceptions might not be inevitably shaped, and she cautioned against assuming that socialities would be inevitably formed (Lock 2008). In this chapter I argue that while Rabinow’s concept may not be readily applied to any sociality forming around health and illness issues, “low-tech” biologies, for example an emerging diabetic identity, can create sociality similarly innovatively without any biotechnological involvement.
In the case of Berlin’s Turkish diabetics, there are no technologies at work, no re-crafted and re-invented cyber-biologies. Previous discussion on the genetics of diabetes causation may indicate a very strong bio-tech component. However, this was not discussed by any of my research participants, neither patients nor health professionals, and not relevant to their self-perception or collective belonging and activities. Nonetheless, biologies are at stake, are managed and shaped, and sociality is emerging that is situated in a certain time and place that offered the right momentum. I suggest that a complex of societal, political, economic and personal elements contribute to such momentum. First, society is – foreseen in Foucault’s biopower (1998) – fine-tuned to public discourse of healthy living, consumer responsibility and chronic illness problems of obesity and diabetes. Second, the Turkish migrant inhabitants of Berlin are a large and increasingly economically stratified community that is politically organised, socially active and represented in local media. An increasing number of Turkish-origin health professionals place the health needs of “their own” population group at the centre of attention and action.
Third, albeit increasingly stratified, the Turkish population in Berlin is still socially and politically marginal and is burdened by social inequality and deprivation, which sparks increasing political organisation and activism. Deprivation created the problem of diabetes in the first place, as many believe, but the current strained economic situation, for example, also initiates communal support and social action, as the Senate’s dried-up funds required alternative provision in a self-help group. I thus also argue against biosocial ethnographies that suggest that marginality and deprivation would not allow for biosociality such as Bharadwaj’s (2008) and Sunder Rajan’s (2008) ethnographies that consider India’s deprived and marginal people as, at the most, bio-available, never bio-active.
In sum, rather than criticising the notion of biosociality here, my aim is to use his concept in order to understand the Turkish-speaking self-help group and other such local diabetes-related engagements as something more than mere self-help and voluntarism as understood by Robinson and Henry (1977: 8). Rather I consider their sociality significant in their time and place that reshaped how these Turkish-origin Berliners living with diabetes have identified and organised themselves. Several colliding aspects, a certain social, political and economic environment and the initiative of certain individuals and groups, allowed for the emergence of an interest in Turkish diabetes care in Berlin and created social spaces such as the self-help group.