«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Rabinow (1996a: 102) imagined his biosocial groups to “have medical specialists, laboratories, narratives, traditions, and a heavy panoply of pastoral keepers to help them experience, share, intervene, and ‘understand’ their fate”. He argued that science and technology are increasingly and inherently connected to industry and venture capital and such transform and create future patient selves and socialities. I agree that we have to expand our scope to acknowledge and understand the influence of politics and economics. Diabetes experience always also involves those who are not ill with diabetes. There are those involved in the provision and organisation, patients and health professionals, but also those involved in politics, policies and business. Therefore, local political, and always also economic, arenas inherently influence how diabetes care is delivered and achieved. I am arguing here that in the field of Turkish diabetes care in Berlin such influences and interrelations played out in the everyday experience and practice of participants. This is largely unexplored in biosocial literature. Social interactions of Turkish diabetes care were deeply embedded in a local political economy and in turn provided a platform for political and economic engagement. There were not patients, health professionals, scientists and drug representatives on opposing or distant sides.
Care and capital: obvious economies Diabetes in Berlin was big business and for many the involvement in both formal and informal diabetes care was also, albeit not always foremost, a financial opportunity, a commodity – or a financial strain. In any conversation with participants of this local diabetes care about other individuals, groups or organisations, most people’s actions were evaluated in light of their strong economic, material component, in other words the chance to recruit members, patients and customers, or the costs of doing so, and I came to a similar conclusion about the significance of the local economics of diabetes care.
The self-help group was my first insight into the underlying material aspect of their activities. Despite being a non-profit organisation, they had to deal with the running costs of their group activities. The community events, in particular, offered the platform to reach a large group of people and potential members; but they also cost a lot of money. The self-help group’s leader and manager Yılmaz painfully experienced the financial strain of running elaborate events and weekly group meetings and it was common knowledge that his involvement with the group had made him bankrupt. He, himself, was keen to tell me about his immense private financial contribution and sacrifice towards the group, especially during the first years of the group when he had not found sponsorships for their activities. No doubt it was his experience as a self-employed businessman and the good contacts he had among Berlin’s Turkish population that he found financial aid from local entrepreneurs, media and branches of health insurances and drug companies. Due to his efforts they also got their weekly meeting room in a local hospital for free (provided by a German doctor), but the group had to hire the town hall for community events and also had to pay for the speakers. I was amazed to hear that the Turkish-origin doctors, who represented themselves as very active in local diabetes care provision, would request a fee. The group’s most important partner to cover these costs was a drug company that gave yearly contributions, offered free glucose tests during community events and provided the group with free glucose meters. The drug-rep Sedat explained to me that drug companies never really make money with these meters but that the real profit lied in the selling of test strips. He also offered these test strips to the group, however not for free but for a “special price”.
One might be cynical about the involvement of the drug company in this group, yet freebies like the glucose meters proved good PR tools for both parties.
Moreover, the drug-rep Sedat who organised this partnership was devoted to helping the group meetings on the rare occasions that Yılmaz could not attend. But not all cooperations worked that smoothly. During my time with the self-help group their biggest concern was their problem with the local Turkish TV and radio stations. As mentioned before, the sudden request to pay for the air-time that the group used regularly to advertise their community events, kick-started a new endeavour of fund raising to cover these new costs. Alongside the groups’ effort to sell refreshments at the events, the drug company’s booth started to charge EUR 1 for each glucose testing, so did the optician booth that offered eye exams. The money raised by these sponsors went directly towards the group’s earning. This alludes to the often blurred boundaries of for-profit and non-profit, business and charity, and market and social interests.
The self-help group also held a rather tense relationship with its founding association, the medics’ society, at the time of my fieldwork. This was not an overt feud over public funding, and there was no open or straight-forward rupture between the groups. It took me a long time to even pick up on this quarrel and the self-help group kept alliances to certain doctors who would still help out at community events, while other doctors would openly boycott such events by scheduling competing events at the same date and time. One of the few times someone gave me a frank assessment of these local quarrels, was when a (German) doctor voiced his frustration (interview transcript 04.08.2007). I asked Dr. W about his perspective on the self-help group’s tension with the medics’ society. He explained that Yılmaz was once on the board of the medics’ society and that they had parted with a big fight. I told him that I had heard a lot of rumours about the fight but never really heard what was happening. Dr. W told me that he only knew that they had an argument and that some of the doctors had started boycotting the self-help group’s events. Dr. W explained that Yılmaz had invested lots of money in these events and was clearly disgruntled that the medics’ society suddenly happened to host such events at the very same time. Dr. W said that Yılmaz was financially ruined now and the doctors did not feel the slightest remorse for their strange feud. At least that was Dr. W’s impression. “There are a few doctors one can work with”, he added – Dr. S for example, was a very nice man who seemed to be a good partner to work with. Dr. S also seemed to be the only doctor Yılmaz still trusted and liked to work with.
Dr. W seemed to see the root of most conflicts in this local Turkish diabetes field in financial competition between the participants. He went on bemoaning how economically driven all the Turkish-origin doctors of Berlin were. They take on far too many patients and so many of them called themselves diabetes specialists despite lacking any kind of special training, let alone the capacity or time to take care of such high maintenance patients.
There is this doctor in Kreuzberg who has just moved to a much bigger surgery although it is puzzling how he can take care of his already quite large patient contingent. […] He isn’t that bad – in fact, he is probably a good diabetes doctor – but he is simply taking on too many patients. [Interview transcript 04.08.2007, p.3] His anger softened though and he explained that it was not only the Turkish doctors’ “fault”. He mentioned the name of a German doctor who has famously enlarged her surgery more and more and was finally charged for fraud. “It’s the German structures too, that allow for such abuse.” As cynical and possibly unjust this view on the motivation of some of the family doctors was, the Turkish-origin family doctors indeed had a reputation among many participants of Berlin’s diabetes care field to use diabetes and their offer of specialist care in their native language to attract patients. The German healthcare system structurally condones – or even requires – such entrepreneurship in family doctors as the (often clinical) doctors who criticised such conduct would admit. The more patients a practice holds (and there seem to be no limits) the more money this practice earns.
I could not help but notice the sometimes fierce competition between doctors, and that conflicts did not only happen between groups such as the self-help group and the medics’ society but also within groups. The medics’ society did not practice such co-operation in their everyday work, albeit always keen to talk about both their relaxed relationship with the self-help group – who they had to “let go” in order to be truly patient-led – and also the great solidarity within their own society. Hardly explicitly mentioned but often implicitly shaping professional relations, work would not simply be shared with one another. I realised this when a doctor of the society had invited me to his practice for one of his Turkish-language diabetes education sessions (field notes 27.06.2007). He showed me the little room that was equipped with a corner sofa, a personal computer with a big flat screen to show slides and various education materials such as plastic foods. Running me through the many Turkish-language slides of educational information he had made himself, he was keen to tell me how important it was to tailor the education sessions towards this specific audience. I commented that his colleagues at the society must be very grateful that he put this Turkish-language material together, assuming rather naively that members of the society would share their efforts in their quest to provide better diabetes care, an endeavour that they so keenly pointed out during interviews.
Instead he quickly told me that he would never share any of this, “after all we are all not only colleagues but also competitors, and I spent a lot of time making these slides”. I would experience many times later that over such competition for patients, doctors would refrain from sharing education material or from referring patients to colleagues in case they cannot meet the education demand due to time constraints.
Hierarchies and authorities: knowledge politics The self-help group’s rupture with the medics’ society, however, cannot merely be explained by the economics of funding competition. Perhaps much more significant was the fact that the self-help group increasingly undermined the authority of these medics. Most prominently they would recommend any newcomer to question their family doctor’s expertise and seek specialist care instead. This, incidentally, undermined not only the authority of the society’s mostly family doctors but in fact also the formal healthcare system’s politics of allocating general diabetes care as the family doctor’s responsibility and referring only critical cases to a specialist.
Such knowledge politics (Foucault 1980), as discussed in more detail in Chapter 4, were indeed a common cause of conflict within Berlin’s Turkish diabetes care field. I was often surprised how health professionals would dismiss the merit of the self-help group, although admitting that the migrant patients would need all the native-language support they could get. Despite the fact that the self-help group occupied the function of self-care in its proper sense as patient-, “lay”-led activity, it nonetheless held a more challenging position in relation to other actors in Berlin’s field of informal diabetes care. The self-help group and its advice and experience was awkwardly placed in between formal and informal healthcare, expert and lay knowledge, and patients and doctors. The group’s activity – perhaps as an organisation that represented a marginalised population group and challenged formal bureaucracies, institutions and authorities – was often scrutinised and sometimes questioned. Yılmaz had a speech ready with all his training qualifications, place and time, the kind of institution and for how many training hours. His first training was organised by Dr S and the medics’ society, then he attended various other courses which he could recount in great detail. In 2001 he received training from Berlin’s university hospital Charité (30 hours with Prof. Dr. H; 30 hours with another consultant, Yılmaz would list). He then completed a course with the German Diabetes Union and a state health insurance and he attended a course at the University of Heidelberg. In the previous year he undertook a diabetes management course at the University of Izmir (he itemised: 160 hours, both theory at school and practical training at the hospital; from field notes 15.03.2007).