«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
While I understood that some doctors would not inform their patients about the group due to above mentioned quarrel, I was surprised that many nurses shared a similar attitude. During a long conversation with a nurse that worked as a diabetes consultant she first questioned her boss’s devotion to his patients. This family doctor would give talks about the vulnerability of his patients yet only had little time for them in his practice. I commented that at least there was support by the self-help group but the nurse quickly doubted the self-help group’s merit for their patients. She knew that he had undergone the same training to qualify as a diabetes consultant but she alerted me to the fact that the formal certificate was denied on the grounds of Yılmaz’s missing medical background. These nurses found themselves, of course, in their own delicate position as diabetes experts that had undertaken extensive training that did not show much in their salaries or in the respect paid by their high-earning bosses. In such a diverse response by a diverse population group, some of these participants had more recognised and mainstream credentials, as medics or formal members of the diabetes union, but even among health professionals the hierarchy was clear.
All those who got actively engaged in such local diabetes care found themselves in a very politically charged arena between individual, communal and market interests. The medics’ society was formed as a structural and political support forum to represent a marginal group of professionals and only later entered Berlin’s diabetes care field. The Turkish-speaking diabetes self-help group was founded as a community response to provide informal healthcare for a vulnerable minority population, but the group itself soon found itself in a delicate position of competing for material resources, namely space and funding, and authority over the kind of knowledge and advice they were providing. In teaching to by-pass family doctors, the self-help group has become more than a competing organisation for funding grants but also became a threat to the recruitment of patients for the individual doctors and their (for-profit) practices. Nurses see their expertise and educational services – offered in very limited time and space – challenged by the weekly, more informal, education provision of the self-help group. These might not be surprising tensions in a field with stark hierarchical structures, and fluent positions of experts and lay people, health professionals and patients, business people, politicians or volunteers.
Such knowledge politics even created conflict within the self-help group. To pick an example of such tensions, I am revisiting Rana’s dispute with Yılmaz (see Chapter 5). She told me how she felt bullied by Yılmaz about her blood glucose levels and guessed that he was behaving in such unjustly manner as she, every now and then, tended to challenge of some of the information he gave the group. Most prominently Rana shared with the group that, contrary to what Yılmaz said, she had found out that even non-insulin dependent patients can get glucose test strips for free from the diabetologist. For one, her information contradicted that of Yılmaz who generally monopolised the educational aspect of the self-help group. It also challenged the group’s extra income who sold test strips to a bargain price thanks to their drug company sponsor. Finally, and probably most importantly, Rana questioned the moral standing of the group to pursue only the best interest of its members to correct information and best deals. The group, indeed, needed to rely on such integrity and reacted sensitively to any kind of offence, as I also experienced at another incident. I, myself, had a bit of a rough patch with Yılmaz at the time of Rana’s dispute as it transpired that Yılmaz would not give me access to the group’s membership database. He voiced his mistrust that I would handle the data confidentially and after I worried about what caused his doubts in my integrity I began to suspect that such a formal database simply did not exist. In any case there was a general tension within the group – mainly triggered after it transpired that a member had stolen from the group – and my own unease with Yılmaz was finally resolved silently. He brought me two CDs of photos of the groups events and activities, as an alternative to the membership database.
Moral economies: ethical performances The above examples show that there was more at stake than political economies of financial competition, hierarchies and authority over knowledge. A moral economy that highlighted solidarity and integrity seemed paramount to many participants in the field of Berlin’s Turkish diabetes care. Speaking to the doctors, nurses, active patients, drug representatives and nursing home managers involved, the main interest they voiced as individuals or organised in groups was, perhaps unsurprisingly, an altruistic one. It might seem somewhat naïve to take such statements at face value, yet the incentive to help people, raise awareness of health risks, available healthcare and support systems and alleviate the community from some suffering was certainly the most public and not necessarily a less genuine motivation of most people’s involvement. It seems often forgotten (by critical medical anthropologists), that doctors indeed do their job to help their patients (for a similar discussion, see Good 1994 and Lupton 1997), and similarly I would argue that the drug-rep Sedat who invests his private time to come to community events or help out with self-help group meetings does so to support “his folks”, and that the self-help group recruits people foremost to share their success with those in need of support rather than banking on more membership fees. Nonetheless this, of course, alludes to a whole range of and not necessarily complimentary motivations.
Albeit being a keen businessman himself, Yılmaz was frustrated about the money-driven attitude of so many people. He told me about the patients who hoped to get their bus fare to the group meetings covered by the group as the weekly expense would strain their social benefit budget. He mentioned the TV station that requested a hefty fee from a non-profit group that is committed to a good cause. And finally, he condemned the doctors who were only keen to expand their patient base without ensuring quality of care. In fact everybody seemed to accuse everybody else to be solely financially motivated and the frequent “money, money, money” lament was as often heard as the usual “Allah, Allah, Allah” to express worry or the educational appeal to “walk, walk, walk” for more physically active lifestyles.
Although all involved were very deliberately aware and demonstratively knowledgeable about local politics and material interests, they would nonetheless express their distaste and distrust for too financially or politically motivated participation in what should really be a moral engagement in health issues concerning a vulnerable patient group. The German doctor who frankly talked about the quarrel between the self-help group and the medics’ society questioned the medics’ society’s agenda as mainly market-driven and thus flawed and questionable.
Such moral scrutiny in regard to financial interests was commonly and frequently expressed by most of the participants. The self-help group was accused to be just after more members, or of giving particular doctors or care providers a “PR” platform at their events. The doctors were accused of only showing an interest in a current concern like diabetes to stock up their practices with more profitable patients.
They abused these patients’ greater vulnerability and need for care while failing to be able to provide them with the necessary time and resources only a practice with few such “high-maintenance” patients can offer. Such an accusation of unethical behaviour was in a way a recurrent performance – one, that never seemed to have any consequences except for some gossip over a glass of tea and the release of some frustration and tension in the plaintiff. It was also always a demonstration of one’s own integrity and reaffirming one’s own altruistic, caring and – emotionally and financially – costly personal contribution to the cause.
The micro-political economy of diabetes care The above ethnography shows that interactions in Berlin’s field of Turkish diabetes care were often tense, and money seemed a prevailing and sore issue, even in regard to authority struggles and at the centre of ethical concerns. Karl Marx (1932 ) conceptualised political economy as the constant impact of capital and production on politics, and economic structures always embedded in social formations and political decisions. Here, I follow more contemporary explorations of political economies that broadened the lens to include such issues as gender, ethnicity and ethics (cf. Mutari et al. 1997), by alluding to the complex interplay of economics, politics and ethics.
There is a plethora of literature on political economies of health and healthcare that investigates the influence of political and economic structures and interdependencies on the health of certain social groups, populations and individuals (Singer and Baer 1995). They explore how such structures cause illness (e.g. Doyal 1995: What Makes Women Sick) or how market developments and national political decision-making influence healthcare provision (as done in much of the HIV/AIDS industry literature, e.g. Poku and Whiteside 2004; or on genomics and drug development, Sunder Rajan 2006).
Some of this literature aims to omit earlier attempts to distinguish macro (e.g.
state system, capitalist markets and globalisation) and micro (e.g. local suffering of health inequalities) and challenges such dichotomies by taking a “micro” look into the science laboratories of the “macro” biotech industry (Rabinow 1999; Sunder Rajan 2006). In the case of diabetes care provision for Turkish migrants in Berlin, it was the provision gap of a strained healthcare system, which failed to accommodate chronic illness that occurred increasingly in marginalised population groups, that prompted such a localised community response. A response that is very much in accordance with (bio-)political and economic strategies to divert care responsibilities to “health-conscious” citizens or civic groups, or customers. Having said this, here I am much more interested in the specifically “micro”: the political economy in its local, situational, everyday form. And this is where I depart from literature on biosociality that largely limit their investigations to the influences of capital markets that involve biotechnology companies, biomedical charities and state institutions (Gibbon and Novas 2008: 1).
I argue that the daily Turkish migrant experience with diabetes was less one of “Political Economy” than “political economy”. By that I mean, it was not about great political encounters with the state and its market economy but about local involvements. Here, I follow the accounts of micro-politics that explore the everyday practices of power, interests, empathies and antipathies, co-operations and conflicts that guide social engagements (cf. Morley 1999). While some individuals, NGOs and working groups were indeed involved in political debates and actions as voiced in conferences and other more political arenas, most actors such as the self-help group and the medics’ society were engaged in another kind of political activity. They did not actually exert explicit political pressure in local politics to improve healthcare provision, but they practised politics of achieving adequate local diabetes care provision by filling gaps with informal “self-help”, and teaching and learning how to gain the most out of the formal healthcare system. Such local political economies of diabetes care included not only the negotiation of informal healthcare alongside the formal system, but also the negotiation of such informal provision within local structures of authority, networks of co-operation and competition, and financial opportunities and constraints. For them it was then not so much about big healthcare politics and their inherent healthcare economics of pharmaceuticals and care finances. Instead it was about everyday struggles for group funding and sponsorships, competition over clients but also over knowledge and authority, fighting for their place in a formal diabetes care provision in a specific market under specific constraints.
Concluding In conclusion, Berlin’s participants of Turkish diabetes care provision interacted in a field that provided social, political, economic and moral scapes, positions and roles.
Unlike the usual medical anthropological focus on patients and doctors, clinical and private spheres, I explore the varied places and roles that such informal social healthcare response creates. While at first sight such co-operations and solidarities could be understood as an informal network of diabetes care, the complexities of roles and positions taken on, allude more to less organised assemblages, or fields as I would suggest a less technical conceptualisation. Asking who is involved in such social responses to diabetes and what is their motivation, alludes to a political and moral economy of diabetes care. Market competition and contestations of authority and hierarchy shape interests, types, commonalities and disjunctures of groups and involved individuals and engender and warrant moral scrutiny and request solidarity.
Ethnographic summary This thesis explored Turkish Berliners’ experiences with type 2 diabetes. This involved both everyday practices of those living with diabetes to manage their chronic illness and the social, political and economic communal responses to diabetes in the organisation of groups, activities and events around diabetes care.
While I formally separate practices and politics of Turkish diabetes experience in Berlin in this thesis, categories of individual, social, collective and communal, as well as practices and politics, are not clear-cut. The following summary of this thesis aims to address such conceptual ambivalence.