the everyday geographies of living with diabetes mark lucherini thesis submitted for the degree of

318 Pages·2015·7.08 MB·English

by  Mark Lucherini

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.

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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

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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

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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

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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.

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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

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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

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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