«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
I refer to individual practices of diabetes control as they are individually negotiated by respective research participants. While diabetes education may convey general clinical information, patients take this advice into their everyday lives that are messier and more complex than an education manual can acknowledge. The story is already more complicated for my research participants as such educational materials are largely not in their native language and contain information that does not apply to their lifestyles and food practices. This provision gap is recognised by other Turkish Berliners who, as health professionals, strive to bridge this gap locally. The result of such collective effort is a self-help group. Such communal response to diabetes will be summarised further on; you already see that a separation of categories of individual, social or communal is merely a structural device. Acquiring knowledge on how to manage diabetes is a collective effort; learning and rehearsing knowledge in the group is a social activity. Having said this, such knowledge is not readily accepted as useful. Only in taking it out of this social group context into their homes, knowledge is recognised and appreciated by the self-help group members. By implementing knowledge in the everyday, their individual lives with diabetes are gradually changed. Thus, in order to be practical, knowledge must be specific and relevant to their everyday lives, and here we are back to the social.
Diabetes is messy, invisible and often unpredictable and creates much uncertainty. Controlling this messiness is largely in the hands of the patient; aside from education on lifestyle adjustments, all clinical care can offer to help with this home-based treatment is the provision of self-testing gadgets and skills. Monitoring blood glucose levels at home is another individual and social practice my research participants with diabetes engage in. Clinical numbers are learned and rehearsed in the group, glucose meters are provided by the group; self-testing, then, happens at home. Clinical numbers of blood glucose, blood pressure and cholesterol may seem abstract entities, but research participants embrace them for their perceived neutrality. They enable them to communicate personal and emotive experiences in seemingly neutral and objective terms. Such a universal communication tool is particularly useful in language-problematic consultations. These numbers, however, can also be arbitrary and normative; let alone from a clinical assessment perspective, within the self-help group, sharing one’s blood values (sic!) may be a social exercise of support but can also be the basis of comparison and judgment. Self-testing can also cause anxieties as it can visualise the messiness of diabetes and make patients feel observed and controlled. Many research participants, though, appreciate this tool of control in order to gain some sort of tangible hold over their diabetes control.
Blood glucose monitors help to visualise not so much the messiness than lurking risk and thus manage uncertainties that they face (individually, without the support of the group at all times present).
Practices of diabetes control need to fit individual experiences, and are therefore idiosyncratically negotiated. How this negotiation is done, nonetheless, is more determined by social lives rather than individual motivation. The example of diet as the most important means to self-manage diabetes can illustrate this challenge. Food practices and habits do not exist in a social vacuum. While public health may often evoke the notion of personal choice in healthy nutrition campaigns (Mol 2008: 58), it does recognise that the problem is often structural and environmental; fresh fruit and vegetable has to be available and affordable (e.g.
Shepherd et al. 2006). Turkish Berliners with diabetes encounter different problems.
While my research participants enjoyed the access to the many and affordable Turkish supermarkets and fruit and vegetable stores, and embraced home-cooking and family meals, this inherently social aspect to food challenged their individual practices of making their diet diabetes-appropriate (cf. Lawton et al. 2006). Nutrition as a social practice requires to adjust dietary advice to their family lives and the family’s acceptance to changes and to negotiate cultural norms of hospitality. I call this idiosyncratic strategic implementation and use of recommendations bio-tactics of diabetes control. These tactics are not only useful to manage diabetes. Research participants with diabetes also tend to live with other complex health problems as well as social challenges of poverty, unemployment or social isolation. The sociality of the self-help group can serve as support for problems such as depression that are not socially communicable and for which help is not sought. Also, learning how to take control over one’s diabetic body and experiencing positive effects can give a sense of empowerment that deprivation and depression may have taken away. Highly structured and disciplined lives with diabetes, therefore, are not necessarily undesirable.
The other major focus of the thesis is on the politics of diabetes care. Diabetes has sparked lively communal activity among the Turkish-origin population. Here, the collective or communal experience of diabetes does not concern social learning within a group or social aspects of lifestyles and health practices. Although not easily separable, referring to “communal” or “collective” rather than “social” should avoid confusion. “Communal” should specifically alert to a collective identity, an “us Turkish Berliners”, that is often evoked by research participants. Diabetes as the opportunity for communal participation is explored as independent of personal health concerns. It also involves people that are not personally afflicted by diabetes;
there are, of course, family members of patients, and health professionals, but also charity and social workers, business people. Diagnosing diabetes as a communal burden that requires communal response has given rise to Turkish-language patient education, the self-help group and community information events. Although only a side note in this chapter, such communal engagement with diabetes care, however, of course also affects individuals with diabetes, their practices of diabetes control, and how diabetes is experienced as an illness. They also get the opportunity to be socially and civically active in retirement or unemployment and to reap rewards from newly developed confidence in asserting better healthcare.
In this local field of informal diabetes care for Turkish Berliners, then, are many individuals involved that occupy varied social roles. Diabetes creates relationships, positions and roles in this biosociality around Turkish diabetes care.
Participants are more than patients or patients-cum-activists. All participants take on multiple roles, either within collectives, as teachers, students or administrators, or due to individual motivations of financial or personal gains as business people or experts. Again, the distinction of individual, social or collective seems arbitrary.
Interactions between groups and individuals are marked by micro-politics, economics, and ethical concerns. The financial element of diabetes care, in particular, leads to competition, tensions, and conflicts that also concern issues of authority and integrity. Many participants in these interactions explain such social tensions as the result of personal (individual) feuds or bruised egos that render this sociality and collective action challenging. That said, communal or political involvements in local diabetes care are linked to personal experience in another way.
While I suggested that this section of the thesis is not about the diabetic body, the physical and emotional experience of diabetes lies, of course, at its heart. Those actively engaged in diabetes care are guided by personal and often emotive motivations, as they experience diabetes in their own bodies, in relatives or friends, or as part of their everyday work.
In sum, practices of diabetes control – knowledge, numbers, tactics – and politics of diabetes control – communal participation and roles and micro-politics in diabetes care – all touch on individual experience, idiosyncratic practices, in short, manoeuvring illness AND communal experience, local politics, in short, manoeuvring healthcare. Both aspects are intrinsically linked and shape one another.
Even the concepts practices and politics are not separable. Diabetes education, selftesting and tactical diabetes management could be used as examples of micropolitics; communal participation, bio-activism and political economy of diabetes care could be explored as practices of diabetes management. All in all, the notion of tactics of diabetes control summarises all chapters.
On interdisciplinarity A medical researcher would now ask: what are the implications? When conceptualising a research project as a medical anthropologist one’s peers in both social anthropology and health research are always keen to find out as to whether the research aims to contribute to anthropological knowledge or tries to advance medical practice. It seems as if the answer can always just be an “either – or”. Either my objective is that of advancing anthropological theory and/or methodology, or making a practical contribution to the healthcare of my research participants. This frequently demanded “taking of sides” appears to say that applied knowledge defies its value, and that one cannot attempt to negotiate between knowledge and its application across disciplines. One disciplinary means might find ends within a different discipline or outside disciplines within society but cannot have more than one/both ends.
There is a plethora of anthropological literature that contributes to such a discourse on interdisciplinary knowledge, from Arthur Kleinman’s Writing at the Margin (1995), to Gillian Beer’s Open Fields (1996) or Marilyn Strathern’s Commons and Borderlands (2004b). I was drawn to these discussions as, after positioning “my” Turkish Berliners as much as “their” diabetics at the margins, I found myself at the disciplinary margins of social anthropology during the processes of peer reviews and funding applications. It was interesting to read Strathern’s (2004) comment on a new “imperative” of interdisciplinary work in academia and was left wondering why one nonetheless largely encounters more doubts and reservations than acceptance and curiosity. With this thesis I aim to contribute to discourses on interdisciplinary work and applied theory.
In her Isaiah Berlin lecture, Strathern (2005) reflects on “useful knowledge”, interdisciplinary encounters and the anxieties those encounters create. I understand and share her plea for acknowledging the value of knowledge, even if it does not strive for applicability, communicability and accountability across disciplinary boundaries. I am thus not trying to contribute to the production of interdisciplinary knowledge because I regard knowledge from humanities or social sciences as not “useful”, but suggest that utility and applicability are entirely separate issues. Rather than wondering if knowledge is useful, my question as a medical anthropologist is as to whether knowledge derived from one means can have several ends.
As a medical anthropologist research participants are often challenged, by their illness, their sick bodies, the environment that is unkind to sick bodies. ScheperHughes famously called for a “militant anthropology” (1995) that feels morally obligated to not only write about suffering but also help alleviating suffering. There is much to criticise about Scheper-Hughes’ paper, her morally rather questionable denunciation of peers as well as her simplistic view of the world, its “goodies” and “baddies” – and the assumption that ethnographers will always explore those suffering and not those who might cause suffering. Having said this, she makes a convincing argument that ethnographers should not take gained knowledge (especially that of processes that cause suffering) with them – merely using it for fancy theoretical arguments and spreading those in journals with (rather) limited readership. While our research increasingly looks beyond suffering, to explore practical engagement and agency, it is still often focused on people challenged by their bodies (cf. Mol 2008). Medical anthropologists seem to be caught in discourses of interdisciplinarity, as their alliance is indeed often closer to their affected informants than to (the theoretical novelty of) their written ethnography. A discourse on interdisciplinary knowledge is to me less a disciplinary conundrum than a practical task. I see “applicability” and “communicability” as the practical implementation of ethical considerations as an ethnographer. The “writing culture debate” pointed to the moral obligation of the ethnographer to – at least – feeding back results to those who helped producing knowledge (cf. Clifford and Marcus 1986). How can my research results translate to a different audience that is not used to read anthropological ethnography but prefers aims/objectives/methods/results/discussion-structured outcomes, or that is not academically trained at all. In the following, I aim to address possible interdisciplinary results of this thesis and suggest that it provides both implications for healthcare and healthcare research and a contribution to the advance of anthropological knowledge.