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«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»

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Tactics of Diabetes Control

Turkish immigrant experiences with chronic illness in Berlin, Germany.

Cornelia Guell

PhD by Research

The University of Edinburgh

Für meine Eltern

Mit liebem Dank für Eure uneingeschränkte Unterstützung, Euer stetes Vertrauen,

Zuspruch und Begeisterung.

ii

Declaration

I hereby declare that this thesis has been composed entirely by me and is my own

work. No part of this thesis has been submitted for publication or any other degree or

professional qualification.

Cornelia Guell iii Abstract This thesis explores Turkish migrants’ practices of diabetes care in Germany. Health statistics frequently identify minority groups as vulnerable to chronic illness and Turkish-origin Germans are said to be more likely to suffer from type 2 diabetes than Germans or Turks in Turkey. Anthropological studies on marginal population groups with diabetes explore experiences of social suffering and inequality that influence such high illness prevalence, or investigate how conflictual lay beliefs and medical encounters affect illness care. Those studies that analyse active diabetes patient and healthcare practices concentrate on the majority population. Drawing on ethnographic fieldwork in Berlin from September 2006 to September 2007, this thesis examines how Turkish Berliners actively engage in diabetes care, and thus joins two themes seldom connected: illness practices and marginality. Initial interviews with healthcare professionals alluded to a Turkish migrant patient group living in deprivation and immobilised by high illiteracy rates, lacking language skills and health knowledge. Despite such experience of marginality, ethnographic exploration revealed that informal diabetes care, for example through a Turkishlanguage self-help group, is nonetheless individually and collectively negotiated where formal care is inadequate. On the one hand, the thesis investigates practices of diabetes control in learning, monitoring and manoeuvring diabetes. Rather than representing the common image of the inert, disadvantaged migrant patient, Turkish Berliners of the self-help group engage in deliberate “tactics of diabetes control” to make their chronic illness experience habitable. On the other hand, the thesis explores how “diabetes among Turkish-origin Berliners” can be a form of sociality, political activism and economic enterprise that involves many social actors not only patients and their healthcare professionals, in order to fill a provision gap.

iv Acknowledgements This research was generously funded by the Economic and Social Research Council and the Wenner-Gren Foundation.

I would like to thank my supervisors Stefan Ecks, Beckie Marsland and Iris Jean-Klein for sharing their expertise with me and always supporting and encouraging my ideas and work. Iris provided advice to the research design, fieldwork and the Wenner-Gren application. Beckie stepped in on short notice and provided guidance and ideas to the final thesis. Special thanks to Stefan for supporting me throughout the PhD process, organising the initial ESRC application and sharing ideas and advice during the research planning, fieldwork and thesis writing.

I thank Cecil Helman at Brunel University for inspiring the initial research idea; and Jörg Niewöhner, Michi Knecht, Stefan Beck and colleagues at the Humboldt University Berlin for their financial support and the opportunity to write and present the first research proposal. Thanks to the Sociology and Anthropology of Health and Illness Group with Ian Harper at the University of Edinburgh for discussing my pre-fieldwork ideas. Many thanks to all colleagues at Edinburgh’s Department of Anthropology – especially Brandi, Lydie, Naomi, Rebecca, Tanya, Dhana, Yushan, Anastassis, Kim, Aya, Julie, Heather and Laura – for their invaluable feedback and emotional support. I would also like to thank John Borneman for his inspirational Master Class in the Scottish Highlands.

My profound gratitude to all the participants of the study, their generosity to let me into their lives and share their views and experiences with me, the warm hospitality, the fantastic food... It was their willingness to take part, open their homes, practices and offices to me and give freely of their time that made this research possible at all. Special thanks to the self-help group, all members and their leader for their trust and openness even in more private or challenging moments.

Many thanks to Havva for providing clarity to many things in the field, from German social policies to Turkish mums.

This thesis is dedicated to my parents. I am deeply grateful for their unwavering support and encouragement throughout my studies, their trust in my abilities, their excitement about my choices; for having taught me the joy of travelling, leaving the familiar to see new perspectives.

Special thanks to Christiane for ten years of dear friendship across many national borders; our joint aspirations have led me to medical anthropology and her to business ethics.

Last but not least, my love and gratitude to my husband Nigel who has been my source of energy, happiness and confidence during the past four years. Also, with him I learned to be clear, critical and open-minded in my work – and many thanks for the proofreading.

v

Table of Contents





SECTION 1: Introduction

Chapter 1: Context

1.1 The social life of diabetes

Diabetes as the mundane

Contested medical territories

Doing diabetes: on self-care

1.2 Turkish migrants in Germany

Turks in Germany today: everyday lives and public image

The history of Turkish guest workers in Germany

Social provision and self-help

Chapter 2: Research methodology

2.1 Researching marginality: the initial research question

2.2 Research setting and participants

Setting: Berlin

Participants: family doctors

Participants: diabetes consultants

Participants: diabetes self-help group

Participants: diabetes patients

Participants: others involved (media, working groups, NGOs, private sector)...... 55 On terminology: Turkish Berliners

2.3 Reflections on study design, ethnographic data and ethics

Interviews, illness narratives and explanatory models

Participant observation: witnessing diabetes

Multi-sited ethnography and ethnographic network analysis?

More hurdles

Ethical considerations and consent

Chapter 3: Bio-anthropologies: theoretical framework

3.1 Beyond bio-power

Bio-power

Power/knowledge

Self-care

3.2 Beyond biosociality

Rabinow’s biosociality

Ethnographies of biosociality

The biosocial lives of Turkish Berliners

viSECTION 2: Practices of diabetes control: Beyond bio-power...............88

Chapter 4: Learning diabetes

4.1 Accessing knowledge

Educating patients

Negotiating formal education: Turkish-language patient sessions

Guarding knowledge

Challenging expertise: the self-help group

Power/knowledge

4.2 Practising knowledge

Accessing but not appreciating knowledge?

Experiencing the practicality of knowledge

Various knowledges

Knowledgeable bodies

Discussion: on practical knowledge and social learning

Chapter 5: Monitoring diabetes

5.1 Quantifying diabetes

Blood glucose, pressure and cholesterol in number

The clinical language of numbers

Playing the number game: embracing the

Abstract

Abstract numbers in practice

5.2 Watching diabetes

Blood glucose self-testing

The clinical gaze at home

Appropriating the clinical gaze: visualising uncertainty

Conclusion

Chapter 6: Manoeuvring diabetes

6.1 Fasting and feasting

Diabetes and diet

Eating at home: varied diet disciplines

Theorising practices of discipline

Bio-tactics of diabetes control

6.2 Managing complexities

Changing lives

Complications and complexities

Diabetes control as life management

A good life?

Summary

viiSECTION 3: Politics of diabetes control: Beyond biosociality.............173

Chapter 7: The communal experience of diabetes

7.1 Local self-care: diagnosing and healing the community

Excursion: Why do Turkish Berliners have diabetes?

Diagnosing a communal health problem: the medics’ society

Community self-management: the self-help group

Collective illness burden and biosociality

7.2 Diabetes care as social participation

Seeking sociality

The social life of self-help

The burden of sociality

Civil participation and everyday bio-activism

Conclusion

Chapter 8: Positions and politics in diabetes care

8.1 Berlin’s field of informal diabetes care

Diabetes as a network

Assemblages, biocrossings and fields

Positions and roles

8.2 Ties and tensions in diabetes care: economics, politics and ethics at stake 213 Care and capital: obvious economies

Hierarchies and authorities: knowledge politics

Moral economies: ethical performances

The micro-political economy of diabetes care

Concluding

CONCLUSION

Ethnographic summary

On interdisciplinarity

Implications for healthcare and healthcare research

Contribution to social anthropology: beyond bio-power and biosociality............ 234 Limitations and future research: outlook on bioethics

Glossary

References

viii SECTION 1

Introduction

Let me start this thesis with a scene from my ethnographic research with Turkish Berliners living with diabetes (from field notes 05.05.2007). On a hot day in May 2007, I gathered with around seventy people in one of Berlin’s district town halls for an information event that offered diabetes advice in Turkish. Squeezed on the narrow benches of the lecture hall’s dress circle I sat with a group of women who I regularly met up with at their Turkish language self-help meetings. We were listening to the self-help group’s leader who had just taken over the podium after a medical talk by a local Turkish-origin family doctor. Rather more engagingly, he was prepping us for the common annual summer stay in Turkey that many Turkish Berliners enjoy. He explained about the use of cool bags to store insulin during long car drives and outings in the summer heat, advised to take insulin as hand luggage to avoid it freezing in the plane’s hold cabin, and not to walk barefoot on the beach to avoid treacherous injuries to the foot. The second part of his talk was entirely devoted to the perils of their holiday diets – especially that of people’s abundant fruit gardens.

What followed was a long list of fruit and we joined in shouting out the guessed sugar content: “An orange?” – “100g of fruit sugar”, “two kiwis” – “120g”, “mango” – “90g”, “15 grapes” – “100g”, “two mandarins”, “honey melons”, “nectarines”, “green plums” – “hmm, we love green plums...”. He didn’t approve of our growing silliness. “Arkadaşımlar! My friends! Take notes.” This snippet from my fieldwork should serve as a little outlook to what this thesis will be about. Many Turkish Berliners may live challenging lives that include social problems and chronic illness.

However, they are not immobilised or defeated by such challenges. Diabetes is actively addressed and managed. Moreover, Turkish Berliners’ experience with diabetes is not lived behind closed doors of homes or of doctor’s consultant rooms.

Diabetes is a social and communal experience – and it is this that provided me with rich ethnographic data.

This thesis explores the chronic illness diabetes as experienced by Turkish migrants in Germany’s capital city Berlin. Health statistics frequently identify population groups at the margins such as people from migrant backgrounds or ethnic minorities as vulnerable to chronic illness (Marmot 2006). Turkish Germans, for example, are said to be almost twice as likely to suffer from type 2 diabetes as Germans, or Turks in Turkey (Laube et al. 2001). I used these statistics as a starting point to investigate experiences of marginality through the lens of illness management and health maintenance.

I chose Berlin as my field site for its large Turkish-origin population, Germany’s biggest minority group. Its several Turkish-dominated districts are, on the one hand, marked by social deprivation and marginalisation and are frequently at the centre of attention of the media that generates public images of social isolation and crime. On the other hand, these districts boast a vibrant and confident multi-ethnic community life. The same Janus-face image describes diabetes in this context. While the Turkish-origin population in Berlin seems to experience the burden of high diabetes rates1, it also has a growing number of Turkish-origin doctors offering native language care and a thriving Turkish diabetes self-help group. Looking at the experiences of Turkish-origin Berliners who are involved in this informal diabetes care, thus makes this a very local, specific, and perhaps therefore peculiar, narrative.

Indeed I encountered – albeit the anticipated and disquieting challenges of migrant social lives – quite unexpected and maybe unusual experiences with diabetes.

Unusual, as many Turkish-origin Germans outside and even within Berlin would not identify with the stories of active diabetes practice told in this thesis. And yet, the stories represent lived experiences of my research participants; and they invite us to challenge public images of disadvantaged, inert migrant lives as well as to reconsider anthropological conceptualisations that aim to make sense of such experiences.



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