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Emotional Geographies of Everyday Life with Diabetes

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Emotional Geographies of Everyday Life with Diabetes ”Are You High?”: Emotional Geographies of Everyday Life with Diabetes by Gentry Hanks Athesissubmittedtothe Department of Geography and Planning in conformity with the requirements for the degree of Doctor of Philosophy Queen’s University Kingston, Ontario, Canada September 2018 Copyright c Gentry Hanks, 2018 Abstract Geographies of everyday life intersect diabetes in interesting ways with emotional and physical consequences. How do those with diabetes seek and create spaces of freedom from these consequences in everyday life? Looking to archival materials and social media discourse, I use a geographical, feminist lens to argue that the diabetic body is a place, a site, for historical and current applications of biomedical technologies that have embodied, emotional consequences for lifeworlds of people with diabetes. Before the discovery of insulin, everyday life with diabetes consisted of persistent high blood glucose levels, starvation diets, calorie counting, hopelessness, diminished lifeworlds, and early death. Now, nearly a century later, for those with access, treatment of diabetes may include the use of an increasing number of pharmaceutical innovations and technological devices to quantify and manage life with diabetes. These pro- grammed/programmable devices are interfaced with human flesh, described as part of an individual’s body and identity, creating diabetic cyborgs. Those embodying these devices seek liberation from negative consequences by hacking them, meaning to use or program the devices in ways not intended or against medical advisement, in order to individualize improvements to the device’s function. Management of dia- betes produces personal biomedical waste from daily use of ‘disposable’ items. I use reddit data to show how some seek freedom from the burden of waste management, while others seek freedom from guilt within a framework of biocitizenship. i Acknowledgments Christopher and Inez, your unconditional love and support have pulled me up so many times when I have fallen. You have both given up so much for me and I hope I make you proud. I am privileged that I get to spend my life under the same roof as you two. Iamsogratefultomyparents,RonandCatherineHanks,foralltheyhavesacrificed for me to accomplish this goal; I’ll never be able to thank you properly. A grand thanks goes to Joyce Davidson and Joan Schwartz for guiding me and mentoring me such a very long way. I am indebted to both of you and the other amazing teachers and mentors I’ve had the pleasure of knowing in my academic life. I’m honored to have learned and continue learning from and with you Beverley Mullings, Myra Hird, Laura Cameron, Dydia DeLyser, and Helen Regis. IwouldliketothanktheDepartmentofGeographyandPlanningatQueen’s University for funding and support, especially Warren Mabee, Neal Scott, and Joan Knox, as well as the Graduate School. I’d also like to acknowledge Jennifer Toews at the University of Toronto’s Fisher Rare Book Library for her guidance with archival materials. I don’t know where I would be without the unwavering love and support of my friends, family, and colleagues: Jason and Anna Hanks, My Salvadoran family, Sab- rina Maria, Mark Lucherini, Jessica Vallelungo, Xiomara Corpe˜no, Rebekah Mon- son and Andrea Vigil, Annemarie Galeucia, Alexandra Pedersen (my acasyster) and Ryan Benvenuti, Christine Grossutti, Emily Graves, Jayne Je↵ries, Eda Acara, Katie ii Hemsworth, Casey Kayser, Nathaniel Lewis, Nick Brown, Sinead Early, Hannah John- son, Andrea Choi, Laurence Simard, JR, Kelly Munro, Rachael Mathies, Tim and Donna Peters, aNNa and Allison Peters, Alison Broach, Jade Huell, Amanda Alvarez, Sabrina Falkenstein, Frank Powell, Mark Palmer, Rachel Mathies, Jennifer Rae, Ron Roy, Stephanie Gross, Scott Lougheed, Cassandra Kuyvenhoven, Becky Pero, Steph Coen, Ebru Ustundag, and Yvonne Rollins. All of our conversations and exchanges of ideas in shared spaces over dinners, conferences, FaceTime, and e-mail have shaped me and this work, for which I am obliged to you all. Milton Moby, my sweet pup and constant companion, I can’t remember much of life before you. You’ll always be on the soles of my travelin’ shoes. Quijote, I’m glad you’re still around to kneed me, when I need you. Iwouldalsoliketothankallofthedoctorsandmedicalsta↵whohavetaken care of me during the 14 or more hospitalizations and countless office visits that have occurred since the beginning of this project. And, finally, a significantly large thanks goes to the online community of r/diabetes. May we all keep helping each other along in this dialife. iii Statement of Originality Iherebycertifythatalloftheworkdescribedwithinthisthesisistheoriginalworkof the author. Any published (or unpublished) ideas and/or techniques from the work of others are fully acknowledged in accordance with the standard referencing practices. Gentry P. Hanks September, 2018 iv Authorship I, Gentry Powell Hanks, am the sole author on all work presented in this thesis. I am responsible for the development of the research questions and conceptual approach, all data collection and analysis, and writing all manuscripts. My thesis committee pro- vided theoretical and methodological guidance and critical feedback that contributed to each of the manuscripts contained within this thesis. A version of Chapter 5 is forthcoming as a chapter in an edited volume, “Throw Away Societies” (ISBN 978- 1-4724-8135-1) from Ashgate, edited by Y. Rollins and C. Kuyvenhoven. v Contents Abstract i Acknowledgments ii Statement of Originality iv Authorship v List of Figures x Chapter 1: Introduction 1 1.1 Introduction . 1 1.2 WhatisDiabetes? ............................ 2 1.3 Research Questions and Objectives . 5 1.4 Chapter Descriptions . 11 Chapter 2: Methods, Methodology, and Frameworks 14 2.1 Methodological and Conceptual Frameworks . 14 2.1.1 Grounded Theory . 14 2.1.2 Situated Researcher . 17 2.1.3 GeneralResearchEthicsBoardApproval . 18 vi 2.2 Methods . 18 2.2.1 ArchivesandMicrohistories . 18 2.2.2 InternetEthnography. 22 2.2.3 Maps of r/diabetes . 28 2.2.4 Online Participant Observation . 36 2.2.5 Lurking . 40 2.3 Theoretical Models . 47 2.3.1 Geographical Approaches to Feminist Embodiment and Identity 47 2.3.2 Surveillance Studies . 58 Chapter 3: Diabetic Lifeworlds: Before and After Insulin 62 3.1 Introduction . 62 3.2 Diabetic Therapy: Before Insulin . 66 3.3 The Process of Discovering Insulin . 77 3.4 DiabeticTherapy:AfterInsulin . 79 3.5 A History of Emotion in Medical Literature on Diabetes . 84 3.6 Summary and Conclusion . 93 Chapter 4: The Qualified and Quantified Self: Hacking the Diabetic Body 95 4.1 Introduction . 95 4.2 Framing The Body, Surveillance, and the Medical Gaze . 100 4.3 The Qualitative Self . 111 4.3.1 Intersectional, Embodied Geographies . 111 4.3.2 Embodiments of Race, Ethnicity, and Diabetes . 112 vii 4.3.3 EmbodimentsofSexandDiabetes . 117 4.4 The Quantified Self . 123 4.4.1 The Diabetic Cyborg . 123 4.4.2 (Self-)Surveillance and Diabetes . 130 4.4.3 High and Low Blood Sugar: Quantified Emotion . 136 4.5 Conclusion . 138 Chapter 5: Emotional Geographies of Diabetic Debris: Social Media Discourses on Personal Biomedical Waste 141 5.1 Introduction . 141 5.2 Diabetes and Waste . 145 5.3 Waste Policies and Suggestions from Canada and the United States . 148 5.4 Methods . 151 5.5 Personal Waste Discourse from Social Media . 154 5.5.1 Legitimizing the ‘Good’ Biocitizen . 156 5.5.2 ‘Good’ Biocitizenship as Difficult to Attain . 160 5.5.3 CreativeBiocitizenship . 164 5.5.4 Resistance and Uncooperative Biocitizenship . 169 5.6 Reflections on Personal Waste Practices and the Role of Policy . 171 5.7 Conclusion . 174 Chapter 6: Concluding Thoughts and Future Directions 176 6.1 Concluding Thoughts . 176 6.2 Considering the Future . 182 Bibliography 184 viii Appendices 213 Appendix Chapter A: GREB 214 Appendix Chapter B: Permissions 217 ix List of Figures 2.1 A Map of African city names mentioned in r/diabetes between January 15,2009andNovember11,2016. 30 2.2 A Map of Asian city names mentioned in r/diabetes between January 15,2009andNovember11,2016. 31 2.3 A Map of North American city names mentioned in r/diabetes between January15,2009andNovember11,2016 . 32 2.4 A Map of South American city names mentioned in r/diabetes between January15,2009andNovember11,2016 . 33 2.5 A Map of European city names mentioned in r/diabetes between Jan- uary15,2009andNovember11,2016. 34 2.6 A Map of Australian city names mentioned in r/diabetes between Jan- uary15,2009andNovember11,2016. 35 2.7 Screenshot from Participant Observation on the 27th of June 2014 . 42 2.8 AvailableFlaironr/diabetes. 45 A.1 GREBApproval.............................. 214 A.2 GREBAmmendment2Approval . 215 A.3 GREBAmmendment3Approval . 216 x B.1 Permission to publish archival materials from The University of Toronto218 xi Chapter 1 Introduction 1.1 Introduction This dissertation addresses a gap in geographical research on everyday life with dia- betes. While there is some excellent work being done on diabetes by geographers, such as Andrews (2011) and Lucherini (2016), there is opportunity to contribute unique research to this area of health and feminist geographies. The embodiment of diabetes unfolds in a myriad of intersectional experiences in everyday life. Where one lives a↵ects one’s access to quality food, healthcare, technological medical treatments, and the disposal of waste generated from treatment. Everyday life with diabetes carries with it embodied and emotional, spatial negotiations that are often invisible to, or taken-for-granted by, those who do not have diabetes. This research incorporates the experiences described in a specific online com- munity and documented in specific archival collections–artifacts as representation of everyday life with diabetes for those who have access to cutting edge medical inno- vations. I engage this research with a feminist, geographical lens, through which I critically explore archival and digital emotional expressions of everyday life with di- abetes. Framing the body as a place, emotion as embodied, and health as influenced by place, situates this research in emotional and health geographies.
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