Resilient Cyborgs: Living And Dying With Pacemakers And Defibrillators (health, Technology And Society)

This book examines how pacemakers and defibrillators participate in transforming life and death in high-tech societies. In both popular and medical accounts, these internal devices are often portrayed as almost magical technologies. Once implanted in bodies, they do not require any ‘user’ agency. In this unique and timely book, Nelly Oudshoorn argues that any discourse or policy assuming a passive role for people living with these implants silences the fact that keeping cyborg bodies alive involves their active engagement. Pacemakers and defibrillators not only act as potentially life-saving technologies, but simultaneously transform the fragility of bodies by introducing new vulnerabilities. Oudshoorn offers a fascinating examination of what it takes to become a resilient cyborg, and in the process develops a valuable new sociology of creating ‘resilient’ cyborgs. Acknowledgements......Page 7 Series Editors’ Preface......Page 10 Contents......Page 13 About the Author......Page 15 List of Figures......Page 16 Part I: Introduction: Theorizing the Resilience of Hybrid Bodies......Page 18 1: Rematerializing the Cyborg: Understanding the Agency of People Living with Technologies Inside Their Bodies......Page 19 Pacemakers and ICDs as Invasive Technologies......Page 21 On Primary Prevention and the Treatment Imperative......Page 24 Disparities in Access......Page 26 On Old and New Cyborgs......Page 27 Rethinking Dominant Views on Human-Technology Relations......Page 28 Everyday Cyborgs......Page 32 Rematerializing the Cyborg......Page 35 Bibliography......Page 44 Transformative Technologies......Page 52 On Vulnerable Bodies and Fragile Technologies......Page 54 Techniques of Resilience......Page 58 Techno-Geographies of Resilience......Page 61 Resilience and Difference......Page 64 How Hybrid Bodies Fall Apart......Page 65 Bibliography......Page 71 Part II: Technogeographies of Resilience......Page 75 Gazing into the Hybrid Body......Page 76 ‘They Can Look Through Your Skin’: Exposing Hybrid Bodies to Machines......Page 78 ‘That Little Beep Could Be Telling You Something’: Listening to Hybrid Bodies......Page 82 ‘Don’t Be Frightened, I Will Take Over Your Heartbeat’: Intervening in the Agency of the Heart......Page 86 ‘I Am So Tired’: Tuning Conflicting Agencies......Page 90 Who Can Make a Difference?......Page 93 The Perfect Cyborg Does Not Exist......Page 97 Creating Techniques of Resilience on Your Own......Page 100 Bibliography......Page 104 New Technologies, New Sensory Experiences......Page 106 The Sensory Experience of ICD Shocks......Page 108 Sensing and Making Sense of Inappropriate Shocks......Page 112 Vulnerability as a Harm You May Try to Anticipate but Can Never Escape......Page 113 Regaining Control: Material Practices for Taming the Unwanted Agency of ICDs......Page 116 Existential Uncertainties......Page 122 Bibliography......Page 125 Digital Sources: Posts at the SCA Association Support Community website 2007–2014. Accessed 1 April 2014......Page 129 Protecting Hybrid Bodies from External Harm......Page 130 Disentanglement Work in Public Spaces: Avoiding Potentially Disruptive Technologies at Airports......Page 134 Protecting the Hybrid Body in the Workplace and at Home......Page 138 Reinventing Intimacy with Loved Ones......Page 143 ‘Now About Our Kids’: Disentanglement and Incorporation......Page 146 Why We Should Worry About Hackable Hearts?15......Page 149 Non-Use as Disentanglement Work......Page 152 Wired Heart Cyborgs as Disabled?......Page 154 Bibliography......Page 159 Part III: Resilience and Difference......Page 164 Accounting for Difference......Page 165 Marked Bodies, Passing, and Resilience......Page 166 On Thin Heart Walls and Narrow Blood Vessels......Page 169 Alternative Implantation Techniques......Page 172 The Gazes of Others: ‘How Did You Get that Scar?’......Page 174 Passing Techniques: On Strapless Dresses and Tattoos......Page 178 Building Resilience by Articulating New Forms of Normalcy: ‘I Am Proud of My Scars’......Page 181 Creating a Collective Identity: ‘We Are Not Weird, We Are Just Wired Differently’......Page 184 Passing and Stretching: Shifting the Boundaries of Normalcy......Page 189 Bibliography......Page 195 Difference in the World of Wired Heart Cyborgs......Page 200 Sensory Experiences, Anxieties, and Emotional Work......Page 201 ICDs as Family Devices......Page 203 Emotional Work as a Collective and Individual Endeavour......Page 206 Anxieties About Living Without an ICD......Page 209 ICDs as Life-Saving Devices......Page 212 ‘Does the ICD Still Work?’ Emotional Work to Overcome Anxieties About the Recurrence of SCA and the Working of the ICD......Page 213 Fear of Losing Control Over Your Heartbeat: Anxieties About ICD Tests......Page 216 Religious Anxiety: ‘Does God Approve of ICDs?’14......Page 218 Fear of Losing an Active, Independent Lifestyle......Page 219 ICDs as Devices of Life Extension and the Extension of Dying......Page 221 Anxieties About an Ageing, Failing Body......Page 223 Learning to Cope with Physical Limitations in a Shrinking World......Page 226 The Co-production of Emotional Distress......Page 228 Bibliography......Page 233 Part IV: How Hybrid Bodies Fall Apart......Page 238 The Passage from Life to Death......Page 239 Life-Extending Technologies and Trajectories of Dying......Page 240 Legitimizing Deactivation: Euthanasia or Letting Life Go?......Page 244 The American Consensus Statement: Preventing the Unwanted Burden of an Operational Pacemaker......Page 247 The European Consensus Statement: Prioritizing the Clinician’s Assessment of the Burden of an Operational Pacemaker......Page 249 The Dutch Guidelines: Operational Pacemakers Don’t Disturb the Process of Dying......Page 250 Geographies of Rights: The Patient’s Autonomy and Dependency on Health-Care Providers......Page 252 Geographies of Responsibilities: The Unruly Practices of Informing Patients......Page 254 Envisioned Dying Trajectories: ‘Will I Be Able to Die’?......Page 257 Waiting for Death After Pacemaker Deactivation: ‘We Had Hoped that, If We Turned Off The Pacemaker, It Would Be the End’......Page 261 Dying with an Operational Pacemaker: ‘The Pacemaker Began to Beep Like Crazy’......Page 264 Technology-Mediated Dying Trajectories......Page 267 Bibliography......Page 273 What Happens After Death?......Page 277 Path Creation, Vulnerabilities, and Resilience......Page 278 After Death: Disentangling the Hybrid Body......Page 281 Resistances and Ethical Concerns: Reuse as an ‘Objectionable Practice’12......Page 284 Making Refurbished Pacemakers Available to the Global South: A ‘Moral Duty’......Page 286 Transforming the Explanted Pacemaker from an Illegal Implant into an FDA-Approved Device......Page 290 Setting Standards for Battery Life: Reducing the Burden of Implantations for Future Users......Page 293 Protocols for Cleaning and Sterilization: Reducing the Risk of Infections......Page 295 Building Global Infrastructures for Clinical Testing: Configuring the Future User......Page 296 Novel Ways of Donating: ‘It’s Like Giving an Organ’......Page 297 Informed Consent Procedures and Follow-Up Care for Future Users......Page 299 Protecting the New Health-Care Infrastructure Against Misuse......Page 300 Full Circle......Page 301 Bibliography......Page 308 Heuristics......Page 313 Building Resilience as Work......Page 314 The Expertise of Everyday Cyborgs......Page 318 Internal Devices as Body-Companion Technologies......Page 320 Accounting for Dying and Death......Page 325 How Difference Matters......Page 328 Bibliography......Page 334 Index......Page 338