Born This Way: The Healthcare, Sexuality, and Social Experiences of People with Intersex Variations Mandy Marie Henningham BA(FA), BHealthMvt(Spt), GCert PubHlth, GCert EdStud(HigherEd), MHlthSc(Sexual Hlth) A thesis submitted in fulfilment of the requirements for the degree of Doctor of Philosophy Faculty of Medicine and Health The University of Sydney 2019 Table of Contents Table of Contents ...................................................................................................................... i List of Publications ................................................................................................................. xi Authorship Attribution Statement ..................................................................................... xiii Statement of Originality ....................................................................................................... xiv Acknowledgements ................................................................................................................ xv Abstract ................................................................................................................................. xvii List of Tables ......................................................................................................................... xix List of Figures ........................................................................................................................ xxi Symbols and Abbreviations ................................................................................................ xxii Chapter One: Introduction to the Thesis .............................................................................. 1 Chapter Two: Born this way: Ethical issues in the healthcare management of infants with intersex variations and their psychosocial implications .............................................. 6 2.0 Introduction ...................................................................................................................... 6 2.1 What is Intersex? .............................................................................................................. 7 2.1.1 Prevalence ................................................................................................................. 8 2.1.2 Common intersex variations ...................................................................................... 9 2.1.3 Issues with terminology ........................................................................................... 16 2.2 Historical issues in intersex management ...................................................................... 18 2.2.1 The influential John/Joan case ................................................................................ 18 2.3 Issues in healthcare practices ......................................................................................... 20 2.3.1 Transitional care to adult healthcare services ........................................................ 20 2.3.2 Lack of base knowledge by health professionals ..................................................... 22 2.3.3 Intersex and disability ............................................................................................. 22 2.4 Ethical dilemmas in treatment ........................................................................................ 24 i 2.4.1 Functionality or ‘social emergency’?......................................................................23 2.4.2 A Western Female Genital Mutilation issue ............................................................ 27 2.4.3 Lack of informed consent ......................................................................................... 28 2.4.4 Problematic genital exams and photography .......................................................... 29 2.4.5 Ethical issues in prenatal treatments....................................................................... 30 2.5 Psychosocial implications of surgical interventions ...................................................... 32 2.5.1 Depression and trauma ........................................................................................... 32 2.5.2 Incorrect sex and gender assignments..................................................................... 32 2.5.3 Body image and interventions ................................................................................. 34 2.5.4 Secrecy ..................................................................................................................... 35 2.5.5 Counselling management ........................................................................................ 36 2.5.6 Sexual satisfaction and function .............................................................................. 38 2.5.7 Sexual desire and fantasy ........................................................................................ 40 2.6 Family relationships ....................................................................................................... 41 2.7 School experiences as an intersex student...................................................................... 42 2.8 Intersex around the world ............................................................................................... 43 2.8.1 Current issues in Australia ...................................................................................... 43 2.8.2 Current issues within the United States ................................................................... 48 2.8.3 Intersex in developing countries .............................................................................. 49 2.8.4 Cultural interpretations of intersex ......................................................................... 50 2.8.5 Rise of advocacy groups and change ...................................................................... 50 2.8.6 Recent developments................................................................................................ 51 ii 2.9 Other recommendations from existing research............................................................. 52 2.10 Conclusion .................................................................................................................... 53 2.10.1 Aims of this study ................................................................................................... 56 Chapter Three: Theorising Intersex - critical exploration of essentialist impositions of power ....................................................................................................................................... 58 3.0 Introduction ........................................................................................................................ 58 3.1 Critical and postmodern frame........................................................................................... 59 3.1.1 Aspects of critical theory ............................................................................................. 59 3.1.2 Postmodernist views on Intersex ................................................................................. 60 3.1.3 Narratives in research ................................................................................................. 60 3.2 Theory Challenging the positivist paradigm for doctors ................................................... 62 3.2.1 Problematic Positivism ............................................................................................... 62 3.2.2 Five-stage model of deviance ...................................................................................... 63 3.2.3 Concept of bodily autonomy ........................................................................................ 64 3.3 Theory Challenging the essentialist view of sex, gender and sexuality ............................ 66 3.3.1 Gender essentialism – a biological lens ...................................................................... 66 3.3.2 Citizenships ................................................................................................................. 68 Biological citizenship ....................................................................................................... 68 Social flesh citizenship...................................................................................................... 70 Intersex citizenship ........................................................................................................... 72 Intersex alignments with other citizenships in activism ................................................... 74 3.3.3 Feminist theories of sex, gender and intersexuality .................................................... 75 3.3.4 Sexuality, pleasure and fantasy ................................................................................... 78 Frameworks of sexuality ................................................................................................... 78 iii Dawn of the modern homosexual identity ........................................................................ 79 Theories of heterosexuality ............................................................................................... 82 The absence of sexuality ................................................................................................... 83 3.3.5 Queering Sex, Gender and Sexuality........................................................................... 85 The performative nature and subordination of gender