CORE Metadata, citation and similar papers at core.ac.uk Provided by ResearchArchive at Victoria University of Wellington Intricate Identities Cochlear Implant Users Negotiating Lives Between d/Deaf and Hearing Worlds Hayley Bathard A thesis submitted to Victoria University of Wellington in fulfilment of the requirements for the degree of Masters of Arts in Cultural Anthropology. Victoria University of Wellington 2014 i ABSTRACT The cochlear implant (CI), a device that “provides hearing sensations for severely and profoundly deaf individuals” (NZ Audiological Society), initially emerged for public use in the 1980s, but was met with strong opposition from Deaf communities in many countries (Lane et al 1996, Edwards 2005). However, since the beginning of the 21st century, hostility towards implants has lessened and they are increasingly accepted as an option in a range of possibilities for deaf children and adults. Despite increasing numbers of the Deaf community considering implants themselves, however, the continuing task of the Deaf community is to counter the conception of implants as ‘miracle cures’ for deafness (Lane et al 1996, Edwards 2005). Furthermore, the Deaf community needs to communicate to parents of deaf children that those with implants may still be perceived as d/Deaf, by both the community and themselves (Christiansen and Leigh 2002). This thesis explores the identities of a small group of cochlear implant users in New Zealand, and examines their involvement in both d/Deaf and hearing worlds. The narratives of my participants demonstrate some of the everyday difficulties that d/Deaf individuals, and their families, encounter in medical and health-care settings, along with educational and workplace settings. I draw on participants’ narratives that explain their relationship with both medicalised and cultural models of deafness, and with Deaf culture, decisions about implants, and perceptions of the effects and limits of cochlear implants. I argue that the identities of CI users in modern New Zealand society are influenced by a multiplicity of factors, including medicalised understandings of deafness, familial pressures, the embodied experiences of CI technology, and personal identity trajectories. Given that these individuals are navigating these multiple threads in the formation of their identities, I argue that, at this stage in their lives, the CI users in this study occupy a liminal position in regards to d/Deaf and hearing worlds. Furthermore, I posit that the medical model of deafness needs to be tempered with social and cultural views of both deafness and CIs, and that the voices of CI users themselves should be prominent in such debates. ii ACKNOWLEDGEMENTS Firstly, acknowledgements must go to my participants, to whom I am so grateful for their time, thoughts, and invaluable contributions. I continue to be blown away by their insightful reflexivity and their openness. I hope that this thesis honours them and honestly represents their experiences. I sincerely thank my primary supervisor, Catherine Trundle, for her constant support and guidance. I thank her for always pushing me to do my best work, and for her invaluable suggestions and input into my research. This thesis would not be quite the same without her recommendations and knowledge. Huge thanks also to my secondary supervisor, Rachel McKee. I thank her for her invaluable reading suggestions, discussions, useful inputs, and I am indebted to her extensive knowledge of the d/Deaf world. Lastly, I must also thank both Catherine and Rachel for their abilities to, without exception, make me feel more relaxed and confident in my work after each and every meeting. I could not have asked for better supervisors. Thanks must also go to my proof-readers – my mum, who has always been there to help. And to Jared, for his dedication in the last hour. I also must thank my dad for his willingness to print and bind this thesis on the last day, despite it being an unreasonable request. To Sam, for your never ending support, love and encouragement, and for your belief in me. This thesis, in all honesty, could not have happened without you – thank you for your social, emotional, and financial support, for enduring the emotional rollercoaster, and for making sure I was fed over the last weeks. For putting up with me unconditionally, I cannot thank you enough. Lastly, to my parents, I would not be where I am today if it were not for you. Thank you for always being my biggest supporters and encouragers, no matter what my decision or direction. I must thank you especially for the numerous ways you have backed me over the last five years throughout my university education – it wouldn’t have been possible without you. I am forever grateful for your belief in me, for always knowing what to say, and for your love. iii TABLE OF CONTENTS ABSTRACT ........................................................................................................................................ ii ACKNOWLEDGEMENTS .................................................................................................................... iii TABLE OF CONTENTS ....................................................................................................................... iv CHAPTER ONE: INTRODUCTIONS ...................................................................................................... 1 THE IMPORTANCE OF WORDS: THE DIFFERENCE bETWEEN DEAF AND DEAF ........................................................ 4 THE POLITICS OF DEAFNESS ........................................................................................................................ 5 DIFFERENTIATING bETWEEN TWO WORLDS: THE SOCIAL SPACES OF D/DEAF AND HEARING WORLDS ...................... 7 COCHLEAR IMPLANTS ................................................................................................................................ 8 METHODS ............................................................................................................................................ 12 CHAPTER OUTLINES ................................................................................................................................ 17 CHAPTER TWO: THEORISING DEAF EXPERIENCES, BODIES AND SUBJECTIVITIES .............................. 19 INTRODUCTION ...................................................................................................................................... 19 UNDERLYING QUESTIONS AND DISCIPLINARY APPROACH ............................................................................... 19 THEORISING IDENTITY ............................................................................................................................. 21 NARRATIVES OF IDENTITY ........................................................................................................................ 23 LIMINAL IDENTITIES ................................................................................................................................ 26 CONCLUSION ......................................................................................................................................... 28 CHAPTER THREE: DECISIONS ........................................................................................................... 29 INTRODUCTION ...................................................................................................................................... 29 TECHNOLOGY AND NORMALITY: DECISIONS ABOUT COCHLEAR IMPLANTS ......................................................... 30 ‘THE LIMITS OF MY LANGUAGE MEAN THE LIMITS OF MY WORLD’: THE IMPORTANCE OF (SPOKEN) LANGUAGE ....... 36 MAINSTREAM DESIRABILITY: DECISIONS ABOUT EDUCATION .......................................................................... 41 CONCLUSION ......................................................................................................................................... 44 CHAPTER FOUR: NEGOTIATING LIFE WITH A COCHLEAR IMPLANT – THE EMBODIMENT OF TECHNOLOGY ................................................................................................................................. 45 INTRODUCTION ...................................................................................................................................... 45 THE TECHNICAL FRAGILITY OF COCHLEAR IMPLANTS ...................................................................................... 46 ‘IT’S SO HARD THIS HEARING THING’ ........................................................................................................ 48 THE SOCIAL WORLDS OF COCHLEAR IMPLANT USERS .................................................................................... 51 iv ‘I CAN’T QUITE IMAGINE LIFE WITHOUT IT’ ................................................................................................ 53 (MIS)UNDERSTANDINGS OF COCHLEAR IMPLANTS AND DEAFNESS IN MAINSTREAM SOCIETY ................................ 54 CONCLUSION ......................................................................................................................................... 56 CHAPTER FIVE: NARRATIVES OF “CHOICE”: PROBLEMATISING THE IDEAL ....................................... 57 INTRODUCTION ...................................................................................................................................... 57 THEORISING CHOICE AND ITS VALUE IN MODERNITY ....................................................................................