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THE EVERYDAY GEOGRAPHIES OF LIVING WITH DIABETES MARK LUCHERINI THESIS SUBMITTED FOR THE DEGREE OF DOCTOR OF PHILOSOPHY SCHOOL OF GEOGRAPHICAL AND EARTH SCIENCES UNIVERSITY OF GLASGOW JULY 2015 THE EVERYDAY GEOGRAPHIES OF LIVING WITH DIABETES ABSTRACT Diabetes is a condition often placed on the margins of ‘seriousness’. It is often believed to impact minimally on an individual’s everyday life and, while this may be true for some people, living with diabetes is not always experienced so ‘easily’. Research from myriad disciplines has begun to shed light on the complex personal issues of living with the condition, but, with a few exceptions, there is little input from human geography. This thesis hence explores the ‘geographies of diabetes’ in more detail. The findings hinge around a ‘recession’ of the diabetic body in public space. This recession is both discursive and material, caused by the assumptions and expectations of others that diabetes is among the minor of chronic conditions, largely overcome by insulin and ever advancing technologies which enable greater self- control over the diabetic body. Visible diabetic bodies are hence subject to a disciplining gaze, for having transgressed these expectations. This thesis finds that, despite many people displaying their diabetes minimally in public, the condition impacts greatly on a personal level. People with diabetes are aware that their bodies are at risk of both short- and long-term complications more so than if they did not have diabetes. These vulnerabilities serve to create anxious bodies for whom everyday spontaneity is curbed and dependency is heightened. In order to conceal the visible signifier of diabetes, to avoid the disciplining gaze, people ‘perform’ aspects of their self-management, hence further obscuring the anxious realities of living with diabetes. The embodied differences of having diabetes along with the discursive ‘recession’ of the condition, contribute to an ideal of ‘diabetic citizenship’. It is to this ‘diabetic citizen’ – who experiences the condition with few problems, and with any difficulty attributed to personal and moral failing – that many people with diabetes express their frustration. Through the methods of online questionnaires and face-to-face interviews, this thesis raises awareness of the clandestine geography experienced by people with diabetes. i THE EVERYDAY GEOGRAPHIES OF LIVING WITH DIABETES CONTENTS ABSTRACT i CONTENTS ii LIST OF FIGURES AND CHARTS iv ACKNOWLEDGEMENTS v AUTHOR’S DECLARATION vi GLOSSARY OF TERMS vii CHAPTER 1 INTRODUCTION: WHAT IS DIABETES? 1 CHAPTER 2 LITERATURE REVIEW: THINKING ABOUT A ‘GEOGRAPHY’ OF DIABETES. 18 CHAPTER 3 CONCEPTUAL LITERATURE REVIEW: COORDINATES FOR APPROACHING A GEOGRAPHY OF DIABETES. 46 CHAPTER 4 METHODS: UNCOVERING DISAPPEARING BODIES (OR COVERING UP DYS-APPEARING BODIES)? 76 CHAPTER 5 THE DIABETIC BODY, INSIDE OUT. 109 CHAPTER 6 THE SPATIAL CONTINGENCIES OF LIVING WITH DIABETES. 152 CHAPTER 7 ‘PERFORMING’ DIABETES: TESTING AND INJECTING. 195 CHAPTER 8 PEOPLE WITH DIABETES AS ‘BIOLOGICAL CITIZENS’. 223 CHAPTER 9 CONCLUSION: A PERSISTENT CONTRADICTION. 251 APPENDIX 1 ONLINE QUESTIONNAIRE. 261 APPENDIX 2 MESSAGE TO ONLINE FORUM MODERATOR. 263 APPENDIX 3 MESSAGE TO ONLINE FORUM USERS. 265 ii THE EVERYDAY GEOGRAPHIES OF LIVING WITH DIABETES APPENDIX 4 INTRODUCTION LETTER TO INTERVIEWEES. 266 APPENDIX 5 INFORMATION SHEET FOR INTERVIEWEES. 267 APPENDIX 6 CONSENT FORM. 269 APPENDIX 7 INTERVIEW GUIDE. 270 APPENDIX 8 BIOGRAPHICAL DETAILS OF PARTICIPANTS. 274 APPENDIX 9 EXAMPLE OF PAPER CODING. 279 APPENDIX 10 EXAMPLE OF NVIVO CODING. 281 REFERENCE LIST. 283 iii THE EVERYDAY GEOGRAPHIES OF LIVING WITH DIABETES LIST OF FIGURES AND CHARTS Figure 1: Image of blood sugar testing 7 Figure 2: Image of blood sugar testing (close up) 8 Figure 3: Image of injecting insulin (close up) 8 Figure 4: Image of injecting insulin 9 Figure 5: Image of apparatus for diabetes self-management 16 Figure 6: Example of the ‘mapping’ of diabetes 31 Figure 7: Example of blood sugar diary 64 Figure 8: Surveymonkey screenshot 89 Figure 9: Radford ‘Halloween’ sketch 132 Figure 10: Radford ‘Diabetic Superbowl’ sketch 1 132 Figure 11: Radford ‘Diabetic Superbowl’ sketch 2 133 Figure 12: Merritt ‘Introducing Bad(ass) Pancreas’ sketch 135 Figure 13: Merritt ‘Bad(ass) Pancreas’ sketch 136 Figure 14: Merritt ‘Bad(ass) Pancreas compromising masculinity’ sketch 137 Figure 15: Merritt ‘Bad(ass) Pancreas compromising relationship’ sketch 1 138 Figure 16: Merritt ‘Bad(ass) Pancreas compromising relationship’ sketch 2 138 Figure 17: Merritt ‘Bad(ass) Pancreas inside head’ sketch 141 Figure 18: Radford ‘Cyborg’ sketch 144 Figure 19: Image of injecting insulin ‘under the table’ 206 Figure 20: The “perceptual victory” (Foucault 1991: 203) of a spatially dispersed panopticon 221 Chart 1: Questionnaire responses to identity question 111 Chart 2: Feeling of safety if having a hypo at home 153 Chart 3: Feeling of safety if having a hypo at work 157 Chart 4: Feeling of safety if having a hypo while on the street 169 Chart 5: Feeling of safety if having a hypo in various social spaces 170 Chart 6: Feeling of safety if having a hypo in clinical spaces 175 Chart 7: Feeling of safety if having a hypo on public transport 182 Chart 8: Stacked bar chart comparing degrees of felt safety in different places 193 iv THE EVERYDAY GEOGRAPHIES OF LIVING WITH DIABETES ACKNOWLEDGEMENTS There are many people I would like to thank for supporting me through my PhD Research. I have been lucky enough to meet many people with diabetes who have taken time out of their lives to talk with me. I sincerely thank them all, not only for their participation, but also the many (reduced sugar) scones, cups of tea and lifts to the train station – their hospitality has always helped to put this nervous interviewer at ease. Also, I want to express my gratitude to those participants who responded to my online questionnaire – their answers and comments on my research have proven invaluable. I am delighted with the way my research and analysis has developed over the years and this is in no small part thanks to the excellent support I have received from my two supervisors Prof. Chris Philo and Dr. Hester Parr. Their support, knowledge, understanding and patience during both ‘crisis’ and more trouble-free times has been a constant reassuring presence. Chris and Hester, thank you. I also thank Dr. Joyce Davidson for supporting my visit to Queen’s University, Canada. I would also like to thank Dr. Brian Kennon for his support of the project and his help in navigating the complex procedure that was NHS ethics. I also wish to express my gratitude to the many members of clinical staff, at the Southern General Hospital, Stobhill Hospital and the Victoria Infirmary who assisted me with my research. I would also like to thank all my fellow post-grads at the School of Geographical and Earth Sciences in Glasgow (and also those at Queen’s University), whose willingness to get a drink on Friday night and talk nonsense has always been a welcome relief from work. My thanks as well to all the staff in the School of Geographical and Earth Sciences who have always created a supportive, friendly and welcoming environment in which to work. I would especially like to thank fellow ‘geographies of diabetes’ scholar Gentry Hanks for all our ‘brunchperiences’ and discussions on geography, diabetes, life and furries. I have been lucky enough to have good friends in Glasgow, Steve, Gill, Andy, Adam and Heather, and I thank them all for their support, company, and occasional Sunday Funday. Thanks also to my family, whose support has been crucial in completing this thesis – I definitely could not have done it without them. v THE EVERYDAY GEOGRAPHIES OF LIVING WITH DIABETES AUTHOR’S DECLARATION I declare that this thesis is the result of my own work, except where explicit reference is made to the work of other. This thesis has not been submitted for any other degree at the University of Glasgow or any other institution. Mark Lucherini st 21 July 2015 vi THE EVERYDAY GEOGRAPHIES OF LIVING WITH DIABETES GLOSSARY OF TERMS CSII – Continuous subcutaneous insulin infusion (insulin pump) Blood sugar level – The measurement of the amount of sugar in one’s blood DSN – Diabetes specialist nurse Glycaemic control – Blood sugar control HbA1c – Three month measurement of average blood sugar levels (given as a percentage rather than in mmol/l) Hypo – Hypoglycaemia (episode of low blood sugar) Hyper – Hyperglycaemia (episode of high blood sugar) MDI – Multiple daily injections mmol/l – Millimoles per litre (the unit of measurement for blood sugar levels) PWD – Person/people with diabetes TIM – Testing and injecting (self-)management vii CHAPTER 1 INTRODUCTION CHAPTER 1 INTRODUCTION: WHAT IS DIABETES? INTRODUCTION To begin my thesis, it is useful to provide a brief history of diabetes, focussing, in particular, with the discovery of insulin in 1921, undoubtedly one of the greatest medical discoveries in modern times. Insulin turned an acutely fatal disease into one that could be treated (if not cured) and laid the foundations for a more hopeful treatment of diabetes that is still developing with new research, technologies and practices. Tattersall (2009), in his book Diabetes: The Biography, notes some of the earliest mentions of diabetes: one on Egyptian papyrus in 1500 BC, while a Hindu physician also mentions it in the sixth century BC. However, these descriptions were limited and the first significant description of diabetes was that of ancient Greek physician, Aretaeus, who poignantly describes many of the symptoms of hyperglycaemia: The course is the common one, namely, the kidneys and the bladder; for the patients never stop making water, but the flow is incessant, as if from the opening of aqueducts. The nature of the disease, then, is chronic, and it takes a long period to form; but the patient is short-lived, if the constitution of the disease be completely established; for the melting is rapid, the death speedy. Moreover, life is disgusting and painful; thirst, unquenchable; excessive drinking, which, however, is disproportionate to the large quantity of urine, for more urine is passed; and one cannot stop them either from drinking or making water; Or if for a time they abstain from drinking, their mouth becomes parched and their body dry; the viscera seem as if scorched up; they are affected with nausea, restlessness, and a burning thirst (Aretaeus quoted in Tattersall 2009: 11). It seems that diabetes was rare in ancient times: another ancient Greek physician, Galen, only ever recorded two patients and Tattersall (2009) speculates that this rarity may have been because relatively few people were overweight in ancient times. 1 Thomas Willis , who is perceived to have given the first modern medical account of 1 I do not intend to give an account of the ‘great men’ in the history of diabetes and the discovery of insulin but I will provide brief biographical details by way of footnotes. Thomas Willis (1621-1675) was an English physician pioneering in neuroscience and is considered to have given the first clear descriptions of many diseases, including diabetes (Hughes 2000). Willis described diabetes as the 1 CHAPTER 1 INTRODUCTION diabetes in 1679, supports this claim, writing that, “in our age, that is given so much to drinking and especially to guzzling of strong wine”, diabetes is more common (Willis quoted in Allen 1953: 74). Despite knowledge of the condition existing in ancient times, the causes of diabetes were long obscure, thereby positing the diabetic body as something of a mysterious space. Tattersall (2009) mentions that in the early-nineteenth century autopsies were useless in determining the cause of diabetes because the organs all seemed normal upon inspection, leading diabetes to be considered as a “ ‘general disease’ which has no local seat … We therefore place it by itself as a non-febrile general disease, with no ascertainable pathology or anatomy” (medical textbook quoted in Tattersall 2009: 32). Further describing the interstitial spatial confusion that surrounded diabetes, Tattersall notes that several physicians situated the cause of the disease in the kidneys, liver or brain before the significance of the pancreas was 2 discovered in 1889, when Oskar Minkowski removed the pancreas of a dog – “since a spare dog was available” (Tattersall 2009: 36-37) – discovering a few days later that the dog could not stop urinating and that its urine contained sugar. Minkowski’s findings later gave credence to the hotly debated internal secretion theory, which posited that a hormone was secreted from within the pancreas that acts upon sugar metabolism. It was then proposed that this internal secretion came from the Islets of 3 Langerhans (named after Paul Langerhans who discovered them in 1869 ), microscopic cells that lie within the pancreas. A low number of islets in the pancreas is now known to be th e cause of type 1 diabet es and such knowledge led to Dr Frederick Banting, assisted by , then medical student, Charles Best, discovering insulin in 1921 . Prior to the 1920s , a diagnosis of diabetes would the most terrible news that a patient and their family could hear. Affecting mostly (but certainly not exclusively) young children , it was all but a death sentence. In the early - twentieth century the only advance in treating diabetes was a ‘starvation diet’ as advocated by two of the few ‘pissing evil’, in reference to the unrelenting frequent urination that is a symptom of hyperglycaemia (Feudtner 2003). 2 Oscar Minkowski (1858 - 1931) was a Lithuanian scientist who is credited with discovering the pancreatic origins of diabetes, but stopped short of developing insulin (Luft 1989). 3 Paul Langerhans (1847 - 1888) was a German physician who is best remembered fo r discovering microscopic cells in the pancreas, although their significance in insulin production was not realised until later (Jolles 2002). 2

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