«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Civil participation and everyday bio-activism The way in which the core members of the self-help group became increasingly involved in activities of the association, acted as confident representatives at selforganised community events or public diabetes conferences and took on administrative roles, might suggest something more than mere social participation but societal involvement. By that I mean that the self-help group membership enabled civil participation in the organisation and representation of a civil grouping that most of the involved had not experienced before. Women such as Rana, Sevim and Feyza might have applied how they privately negotiated and managed their family and work lives to such event planning, yet the club life of organising public events and representing one’s group to the public was new to them and took some out of their comfort zones.
Becoming increasingly confident in such activities, the women also started to adopt a more active civil role. Through the group they learned how to assert their civil entitlements in formal healthcare. They learned about the kind of services chronically-ill and socially deprived patients are entitled to in the state health insurance, they learned what kind of provision one can demand and how and where to demand it. As a result, they were confident to request patient education and specialist care when they felt inadequately treated by their family doctors. Probably the most telling example of such patient right’s claim involved the so-called DMPs, Disease Management Programmes (in English, not a German let alone Turkish translation) for chronic illness patients.
These DMPs were devised as part of the recent healthcare reform and involved the state health insurances signing up their patients who suffered from particular chronic illnesses such as diabetes for a structured care plan that should ensure standardised quality care with regular, monitored check-ups. Patient lobbies such as the self-help group welcomed the DMPs as tools that would ensure that doctors adhered to good practice care and that supported patients financially by covering most out-of-pocket expenses. Many doctors, on the other hand, saw the DMPs as a major bureaucratic effort that cost time and resources rather than ensuring better quality care and they, no doubt, did not appreciate being controlled from the outside. The self-help group would frequently advise current and new members to request the DMP from their doctors, knowing that many doctors did not like to sign too many patients to the programme, at least not “problem patients”. Some doctors indeed told me that they were reluctant to enrol their migrant patients to the DMP and explained that these patients tended to miss appointments due to their frequent travels to Turkey and such failure to attend would fall back on the doctor’s quality of care. Some – doctors, patients or other healthcare workers – would also comment that DMPs were merely another business venture for health insurers that made the insurer more money than saved the patient costs, and the insurers’ quite aggressive campaign to get Turkish-origin patients on board made me reach a similar cynical assessment. Attending that year’s World Diabetes Day conference in Berlin, for example, I saw how the biggest local insurer had staffed their booths with largely Turkish-speaking promoters. The frequent Turkish-language advertisement letters sent to their Turkish-origin clients told a similar story. This, however, also made clear, that most chronically ill German patients were aware of DMPs and that it was illiterate or non-German speaking migrant patients who needed targeting as they were unaware and missed out on this government induced scheme. The frequent members of the self-help group all took part at the DMP and also supported each other in correspondence with the health insurance and how to negotiate mandatory check-ups with summer stays in Turkey.
I would argue then, that the women, in particular, seemed to have replaced their fairly inert marginal position in society with an active role in club life and maybe even more strikingly with an active and confident patient role that negotiated healthcare provision and funding. Such notion of civil participation might invite reference to Petryna’s intriguing ethnography on Ukrainian assertion of “biological citizenship” (2002). She explored how, in the backdrop of post-socialism, “the damaged biology of a population has become the grounds for social membership and the basis for staking citizenship claims” (ibid. 5). She traced Ukrainian citizens from being Soviet subjects that were not fully informed about the dangers of the Chernobyl reactor explosion to being democratised radiation damaged victims that can claim compensation for suffering. Such injured biological selves were thus evoked in order to negotiate state provision and citizen right. The concept is also formulated by Rose (2007: 132) “to encompass all those citizenship projects that have linked their conceptions of citizens to beliefs about the biological existence of human beings, as individuals, as men and women, as families and lineages, as communities, as populations and races, and as species”. A similar concept is that of pharmaceutical citizenship, that Ecks (2005) uses to describe how people with depression in India are deemed marginal, while antidepressants promise integration in middle-class mainstream society.
Is “biological citizenship” or “pharmaceutical citizenship” thus applicable to my research participants and would it be useful to understand their experience as a social practice of negotiating citizenship on the basis of their diabetic bodies or their success control of them? At first sight, the members of the self-help group indeed repositioned themselves as no longer marginal, but as citizens with rights to certain healthcare provision and assumed such a position within a healthcare system that did not encourage much participation. They did this quite late in their lives in German society – often thirty years after settling down in Berlin – as diagnosed diabetics.
Such uptake of the citizen’s role that is entitled to rights happened due to their diabetes but perhaps more significantly due to their subsequent encounter with the self-help group that brought out such citizen awareness. But was their engagement in the management of their group and their illness about being citizens, or perhaps patients, and was their “biological belonging” based on being Turkish migrants or diabetics? Such ascriptions seem incidental. Indeed, the group and their social participation enabled many to challenge their marginal societal position. My research participants, though, did not consciously evoke civic rights or participation, and rather learned to assert a mainstream (as opposed to marginal) patient position within the German healthcare system. Insofar as the state was represented in DMPs and bureaucratic rules about association statutes, it could be argued that the group was engaged with the state and its healthcare system. Yet they did so in search for appropriate care and not so much for citizenship and state acknowledgement.
Likewise, the state did not seem to acknowledge their “expert patientism” that contradicts the public image of challenged, marginal migrant patients. Their experience could be thus better understood as some sort of “bio-activism” as a more fluent, situational and haphazard social practice. It was not about being citizens but about being patients, not demanding rights or recognition as much as good care (cf.
Mol 2008: 31, on citizenship vs. “patientism”, see also Chapter 6.2).
Above all, I suggest understanding the self-help group’s biosociality or bioactivism as a mundane everyday practice that is motivated by everyday concerns. As I argued that this biosociality was not born out of biotechnological innovation, it also does not involve lobbying for access to such high technology. Diabetes diagnosis is not dependent on sophisticated and exclusive biotechnology but is today offered at any large supermarket’s pharmacy section. While there is some medical research into pancreatic transplantation and genetically modified insulin analogues, the most effective treatment remains to this day nutrition. Political lobby work is therefore often focused on guaranteeing adequate patient education. More so, people learn to “lobby” for everyday access to care, how to request specialist care or discuss their medication with their doctor. Finally, social organisation is not happening on virtual platforms, but the self-help group and most health professionals involved in Turkish diabetes care in Berlin operate on a very low-tech level, using phones not emails, flyers not websites, town halls not virtual chat-rooms. Nonetheless, an information network has developed in recent years, though a rather more personal one than virtual talk-boards. All in all, this is a “low-tech” bio-activism, but has concerns and demands for better diabetes care at its heart.
Conclusion In this chapter I argued that diabetes was identified as a communal problem that required a communal response. While this “diagnosis” was initially done by those closest to the problem, Turkish-origin doctors, the response also involved patients – organised in a self-help group – and other interested community members. The selfhelp group provided its members with the opportunity for social and perhaps civil participation. While this sociality could be quite separate from the illness experience itself and invested interests went beyond health concerns and included group organisation and representation, the social experience of diabetes was at the same time linked to individual, lived and embodied experiences of diabetes, as explored in Section 2. For the members of the self-help group, their diabetes provided them with the chance of socialising, getting out of the house and meeting like-minded people.
Many of these (mostly elderly) people suffered from some loneliness, had lost partners and friends, their children had left the house, and they were retired or unemployed. With their diabetes they gained another opportunity to meet new people and start new activities. Many embraced the challenge of raising money for the group, and for example became very involved in planning what kind of food and drink could be sold at information events. In fact, especially some of the women had not previously had such an opportunity of social involvement, campaigning for something, or being part of a larger group (without their husbands present). The group’s effort to ensure formal healthcare provision for themselves, understanding the system, asserting a position as mainstream rather than marginal patients, and claiming patient entitlements, for example for specialist care and education, means that diabetes also provides the opportunity for civil participation in what might be referred to as “biological citizenship” or, omitting the state, as “bio-activism” or “biosociality”. Rabinow’s (1996a) biosociality seems indeed fitting; a group formed around their diabetic bodies, forming a mutual support network, a place for identification and representation, and a place to assert better care. Yet unlike Rabinow’s biosociality, Turkish Berliner’s bioactivism does not focus on lobbying for patient rights or diagnostic tools but largely involves giving support, information and confidence to assert and achieve better everyday care, or simply social company.
Indeed, unlike Rabinow’s conceptualisation, social engagement here is not born out of technological innovation and imagined biotech futures that shape present understanding. Nonetheless it is an innovative sociality that emerged in a specific time and place. Contrary to biosocial accounts that argue that poverty excludes biosociality, social momentum here is generated from marginality and deprivation, social inequality, and local politics. But it also gains momentum from personal experiences of social isolation as well as the appreciation of sharing diabetes knowledge.
Chapter 8: Positions and politics in diabetes care
This chapter sets out to disentangle what lies beneath communal activities within and through local diabetes care. If diabetes among Turkish Berliners can be understood as a kind of biosociality, what does it look like? This biosociality involves individuals and groups, various settings and events. Berlin was an active field for migrant health initiatives, both formal, for example represented by Turkish-origin doctors, and informal in form of the self-help group and community information events. Initiatives were sometimes generally framed as “health in the community” issues, but often addressed as specific problems such as diabetes – which, incidentally, served as a test case or telling example for wider concerns such as obesity or consumerism. The participants of such activities and initiatives presented themselves as a sort of network of involved individuals and groups (“one knows one another”), however, as a network that was often perceived as “dysfunctional” (characterised by mistrust and competition) or sometimes – more paradoxically – as “non-existing” (meaning it lacks co-operation). They considered this network flawed with conflicts, while my own conceptualisation of a local network faltered due to the complexities of positions and roles within these encounters. While anthropologists have acknowledged in recent years that our investigation should expand from a focus on doctors and patients to activist groups, policy makers and industry, they have failed to recognise that such positions and sites and their interactions with one another are more complex than often described. In this chapter I look at Berlin’s field of informal diabetes care, its participants, their varied roles in varied settings and events. While biosocial literature imagines the patient-cum-activist as well as scientists, therapists, businesspeople, I will suggest that a patient can be a lay person and an expert at the same time, a student and a teacher, an activist and a businessperson, and position herself fluently in different engagements and encounters. I argue that as positions and places are flexible and complex, this creates much space for solidarity and conflict, co-operation and competition in a local political economy of market, hierarchies, power tensions and ethics.