Diagnosing Sex Stories of Intersex, Relationships & Identity Charlotte Jones A thesis submitted in partial fulfilment of the requirements for the degree of Doctor of Philosophy In the subject of Sociological Studies Faculty of Social Sciences University of Sheffield 30th September 2016 Abstract This thesis provides necessary insight into the stories of people with atypical sex development or intersex characteristics. It is one of the first sociological studies of its kind to take the UK as its only geographical focus, and therefore makes a valuable contribution to exploring the social understandings of intersex and its medical care provisions in a local context. In light of the contested pathologisation of these sex traits, this thesis pursues a greater understanding of participants’ own accounts of the bodies, experiences and identities under question. The study uses a two-tiered qualitative process of solicited diaries followed by in-depth interviews with nine participants. Starting with the broad themes of social relationships and identities, this research places an original focus on how feelings of loneliness are experienced, anticipated and understood by participants, as well as the framing of (in)authenticity in participants’ approaches to sex classification, their engagement in and attitudes towards sexual activity, and their understandings of parenthood and experiences of infertility. My research indicates that participants’ understandings of their diagnoses are framed by notions of an idealised or ‘normal’ future. Normative expectations, including certain ways of being and life course milestones, are proffered as socially valuable at the expense of their alternatives. In some cases, this has led participants to feel an absence of control, and a sense that their lives or bodies are failing, unworthy or inconceivable. I show how the potential for stigmatisation and ostracism imposes a requirement to ‘pass’ as binary sex. Feelings of difference and deviance can lead people with atypical sex characteristics to feel like they do not ‘fit’ or ‘belong’; that – despite their relationships – they are alone. These conclusions offer insight into how social and medical support can be improved, and provide valuable contributions to intersex scholarship, reproduction studies and broader sociological debates on personal, political and institutional relationships. Table of Contents Acknowledgements .............................................................................................................................................. 1 Chapter 1: Introduction ......................................................................................................................... 2 Approaches to Sex Variation Chapter 2: The Stories............................................................................................................................. 9 Meeting the Participants Chapter 3: Literature Review ............................................................................................................ 17 A Background to the Medicalisation of Atypical Sex Chapter 4: Methods ................................................................................................................................ 32 Researching the Social Consequences of Intersex Diagnoses Chapter 5: Loneliness ............................................................................................................................ 54 Negotiating Social Relationships and Learning to ‘Fit’ Chapter 6: Passing I ................................................................................................................................ 71 Interaction and Ethical Dilemmas Chapter 7: Passing II .............................................................................................................................. 87 The (Un)certainties of Sex Chapter 8: Sex, Relationships and Time ................................................................................... 109 Questioning Typical Narratives of Sexual Interaction and Partnership Chapter 9: Reproduction, Fertility and the Future ............................................................. 132 The Imagined Life Course and the Pursuit of Alternative Milestones Chapter 10: Conclusion ..................................................................................................................... 154 Developing a Critical Understanding of Sex Bibliography ..................................................................................................................................................... 158 Appendix A ......................................................................................................................................................... 171 Participant Recruitment Notice Appendix B ......................................................................................................................................................... 172 Participant Information Sheet Appendix C ......................................................................................................................................................... 174 Participant Welcome Letter Appendix D ......................................................................................................................................................... 175 Participant Ethical Consent Form Acknowledgements I am very thankful to my supervisory team, Kate Reed and Richard Jenkins. Their considered responses to my queries and draft chapters have been incredibly helpful throughout my PhD research, and their honesty and encouragement has been essential to the completion of this thesis. They have both left an impression on my approach to research and writing which will undoubtedly – and very gladly – stay with me for the rest of my career. This thesis has also been written with many smiles, breaks and long lunch hours, thanks to the friendship, welcome distractions and peer support offered by all of my Sociology PhD colleagues, especially Jen, Kitty, Donna, Rosie, Pete, Natalie, Matt, Martin, Maryam, Celso, Rob, Melanie and Abureza. I am also thankful to the many members of staff in the department who have given me advice and friendship or shown an interest in my work, especially Janine, Sarah, Tom, Will, Dan and Lorna. My work colleagues outside of the department – particularly Jen, Lisa and Emily – have also been a great help. I owe a lot to the very special friends who have helped me to maintain my happiness and enthusiasm throughout the PhD process, especially Azeezat, Beth, Hannah, Gabby, Julia, Rosie, Hazel, Jonny, Greg, Rowan, Lydia, Lauren, Daniel, Will and the McPhee family. Perhaps most of all, I am thankful to my family – Manda, Steve, Mike, Ed, Abi, Imogen, Ellie and Seán – for the love, kindness and patience they have shown me and for their faith in my abilities. Everyday conversations with my partner, Seán, have been a fundamental part of my research process, helping me to develop my ideas, feel more comfortable in speaking ‘intellectually’ and to work out where I stand (more or less) on so many different issues. I am very grateful to the Economic and Social Research Council (ESRC) for funding this project. Finally, I am so appreciative of the time, energy and thought contributed by my research participants. It was a huge pleasure and a privilege to meet them and learn more about their lives. I thank them for sharing their experiences with me. This is dedicated to Grandma Hilda, who would love to have known I’ve written a PhD thesis. 1 1 Introduction Approaches to Sex Variation Two hundred faces watched as their university lecturer covered the basics of cell biology. The focus of recent sessions was genetics, including conversations on sex differences, in which students were taught the ‘genetics of a woman’ illustrated on the presentation slides by an XX karyotype. In this session their lecturer explored variations on chromosomal karyotypes and their related genetic conditions, joking to his class about one particular ‘genetic mutation’, androgen insensitivity syndrome (AIS). He listed the physical characteristics associated with women who have the condition – ‘ambiguous’ genitalia, the presence of a Y chromosome (typically XY) and internal testes – then pointed to his head and remarked mockingly: ‘In their minds they think they’re women, but they’re not’. Pandora sat in the large lecture theatre, her face was one amongst many but she still felt her skin burn up into an angry blush. She looked around to check whether the lecturer’s description had revealed to other students that she was one of the women he had identified. She felt her ‘disguise’ was slipping, and feared that she would be found out soon. Already dealing with insecurities of not being a ‘real’ woman, Pandora sank further into her seat and waited anxiously until she could remove herself from the class. Once the lecture had finished, she ran home and cut deeply into her skin, just as she had on other occasions since receiving the diagnosis. This quieted the whirring panic temporarily and gave her a release from the feelings of despair. *** I begin this thesis with a story which was shared with me by Pandora, one of the nine participants in this research, to illustrate her everyday risk of exposure, shame and harm. This is Pandora’s retrospective account and interpretation, so its veracity cannot be guaranteed. However, its importance lies in what it tells us about how Pandora heard it, how she felt, and what