«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Marginality is thus not only relational, experiencing marginality does not simply mean to be confined to the societal periphery, but it is shaped by its activities rather than inertness. This thesis framed agency as tactics of diabetes control and explored what these activities and activism involved: agency could mean the everyday practices of diabetes control, learning about diabetes, monitoring their diabetic bodies and managing lives with diabetes; agency meant the social momentum in diabetes care, the social relations and roles that diabetes created, and the micropolitics that shaped any involvement in diabetes care.
All in all, the ethnographic data in this thesis could speak to a range of theoretical concepts, pointed to their strengths but also limitations and proposed alternative avenues. This is as this thesis set out to explore a broad range of experiences with diabetes in Berlin’s Turkish population. I believe that understanding this experience comprehensively (in Weber’s sense, Verstehen, 1922), required ethnographic “thick description” (Geertz 1973). This thesis thus told the story both of personal experiences with chronic illness as a Turkish Berliner and everyday practices of diabetes self-management, and in what way diabetes demanded a communal response within the Turkish-origin population in Berlin, in order to capture and account for the interrelations of individual and collective experience of illness and marginality.
Limitations and future research: outlook on bioethics Following the contributions, I will finally briefly discuss the limitations – in conceptualisation and scope – of this study and propose future research projects. First of all, this thesis is a privileged view on those Turkish Berliners who are engaged in their diabetes care, those who are taken care of or take care of themselves. The decision to put these people centre stage is to show that such experiences of active healthcare practices exist and are significant in individual and communal lives. In order to expand from this particularity, I suggest that such activities should be explored in other localities than Berlin, by other marginal groups than Turkish migrants and concerning other issues than diabetes. A complementary research project, on the other hand, could or should seek out those others who decided not to join such groups, or those who fail to be addressed by them, those who feel defeated by their diabetes, or in fact those who are organised in different ways, perhaps not in terms of Turkishness but perhaps religion, locality, or gender. Planning such research such people could be reached by looking at non-health related social groups. Berlin, for example, also has numerous women’s groups. As this research project was limited to a female researcher, the main informants that provided insight into the everyday lives of diabetes management were women. A future research project could be include a mixed team of researchers, male researchers to reach men, perhaps Turkish-origin researchers to gain access to patients that did not open up to the German researcher of this project. Future research with those who are not involved in such organised diabetes self-management could address new research questions that explore if tactics are indeed reserved to the “copers” (Kelleher 1988), or do those who feel defeated by their diabetes nonetheless engage actively with their diabetes?
The second limitation of this study is that, although gender appears as a recurring issue in this thesis, it was not explicitly addressed. I decided that an adequate discussion of gender issues would have been beyond the scope of this work and did not fit the line of argument in which this ethnography was crafted. Studies, however, suggest that Muslim women in particular face barriers to health and healthcare (e.g. Lawton et al. 2006, on barriers to physical activity in British South Asians with diabetes). An indication of this can be found in Chapter 7.2 that mentions in which way some women in the self-help group experience tensions in their family due to their active social lives around diabetes care. Another limitation is that ideas of ethics were raised but only assigned marginal significance; in Section 2, Foucault’s questions around ethical practices were considered marginal to the lived bodily experience of illness, Section 3 only mentioned ethical debates in terms of how they guard and qualify social interaction. That said, I encountered in the course of this research project that there are inherently ethical questions involved in chronic illness prevention and care that can be addressed and explored by anthropological research.
For future avenues of research I thus like to end this thesis with a proposition beyond the exploration of everyday healthcare practices and politics. I pointed out that diabetes is perceived as a mundane illness, perhaps unspectacular, without much medical or technological innovation, and yet, I argued that it is a fruitful field of anthropological inquiry, as I joined experiences of chronic illness and marginality.
Here, I would like to propose an exploration of bioethics.
Social scientists already contribute to interdisciplinary bioethics debates in the realm of biotechnologies by investigating how users of human genetics and reproductive medicine experience challenges to their biological identities and body integrity. I suggest that issues of obesity and chronic illness should receive similar attention and be addressed in similar ways. However, anthropology seems reluctant to take on such issues. Interrelations such as HIV/AIDS and poverty are enthusiastically discussed, perhaps because anthropologists’ stance seems unambivalent: people with HIV/AIDS should receive recognition for their plight and, most importantly, medication, irrespective of their financial means, geographic
location or cause of infection. Issues around obesity-related illness are less clear cut:
of course, people should receive care, irrespective of their background, but if care involves changing lifestyles, public opinion is torn. Can people be told off for serving their children frequent take-aways? Or is the issue one of teaching them how to cook healthy meals? Should society intervene in the first place, or would nonintervention be equivalent to not providing adequate healthcare?
If Turkish Berliners with diabetes learn that pide bread should be replaced by whole-meal bread, is it really their choice if the alternative may be a future life with blindness or dialysis. My research participants would answer that lifestyle changes are acceptable if they are practical in their everyday lives and make everyday lives more habitable and that the question of ethics is one of access to information and care. I do not suggest that anthropologists should necessarily position themselves in this debate but to explore everyday negotiations of such ethical debates and how varied and heterogeneous perspectives may challenge established values of health, care and choice (cf. Mol 2008). What I propose is for medical anthropologists to discover obesity, diabetes and cardio-vascular diseases as fruitful and complex fields of and contributions to bioethics.
ADA American Diabetes Association DMP Disease Management Programme GDM gestational diabetes mellitus HbA1c Haemoglobin A1C (‘glycosylated haemoglobin’) HDL high-density lipoprotein (‘good’ cholesterol) IDDM insulin-dependent diabetes mellitus IDF International Diabetes Federation IGT impaired glucose tolerance IQWiG Institute for Quality and Efficiency in Health Care (Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen) LDL low-density lipoprotein (‘bad’ cholesterol) MODY maturity onset diabetes of the young MRDM malnutrition-related diabetes mellitus NGO non governmental organisation NICE National Institute of Clinical Excellence NIDDM non-insulin dependent diabetes mellitus
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