INTERSEX Intersex Stories and Statistics from Australia Tiffany Jones, Bonnie Hart, Morgan Carpenter, Gavi Ansara, William Leonard, and Jayne Lucke http://www.openbookpublishers.com © 2016 Tiffany Jones, Bonnie Hart, Morgan Carpenter, Gavi Ansara, William Leonard, and Jayne Lucke This work is licensed under a Creative Commons Attribution 4.0 International license (CC BY 4.0). This license allows you to share, copy, distribute and transmit the text; to adapt the text and to make commercial use of the text providing attribution is made to the authors (but not in any way that suggests that they endorse you or your use of the work). Attribution should include the following information: Tiffany Jones, Bonnie Hart, Morgan Carpenter, Gavi Ansara, William Leonard, and Jayne Lucke, Intersex: Stories and Statistics from Australia. Cambridge, UK: Open Book Publishers, 2016. http://dx.doi.org/10.11647/OBP.0089 In order to access detailed and updated information on the license, please visit http://www.openbookpublishers.com/isbn/9781783742080#copyright Further details about CC BY licenses are available at http://creativecommons.org/ licenses/by/4.0 Every effort has been made to identify and contact copyright holders and any omission or error will be corrected if notification is made to the publisher. All external links were active on 15 January 2016 and have been archived via the Internet Archive Wayback Machine at https://archive.org/web Updated digital material and resources associated with this volume are available at http://www.openbookpublishers.com/isbn/9781783742080#resources ISBN Paperback: 978-1-78374-208-0 ISBN Hardback: 978-1-78374-209-7 ISBN Digital (PDF): 978-1-78374-210-3 ISBN Digital ebook (epub): 978-1-78374-211-0 ISBN Digital ebook (mobi): 978-1-78374-212-7 DOI: 10.11647/OBP.0089 Cover image: Purple&Yellow Wall – Kinsale (2008), photo by Sonia Luna, CC BY- NC-ND 2.0. https://www.flickr.com/photos/sonialuna/2942152110 All paper used by Open Book Publishers is SFI (Sustainable Forestry Initiative), PEFC (Programme for the Endorsement of Forest Certification Schemes) and Forest Stewardship Council(r)(FSC(r) certified. Printed in the United Kingdom, United States, and Australia by Lightning Source for Open Book Publishers (Cambridge, UK). Contents Acknowledgements ix List of Tables and Figures xi Executive Summary 1 1. Introducing Intersex Studies: New Theory for New Research 11 Key Points 12 Intersex Variations 12 Stigma and Silence 15 Increased Networking and Advocacy 19 Australian Advances 23 Lack of Social Research 26 Research Frame and Aims 31 This Study’s Framing 50 2. Designing a Study on, with and for People with Intersex 55 Variations Key Points 56 Reference Group 56 Overall Approach 58 Data Collection Tool 58 Terminology use in the Study 59 Ethical Considerations 61 Sampling 62 Study Title, Concept and Logo 63 Recruitment and Promotion 64 Data Analysis 67 3. Basic Demographics for People with Intersex Variations 69 Key Findings 70 Number of Participants 70 Age 70 State/Territory 71 Aboriginal and Torres Strait Islander Descent 73 Sex Marker Assigned at Birth 73 Sex Marker Used Now 74 Transgender Status 76 Disability 77 Living Arrangements 78 Religion 79 4. Discovering, Experiencing and Discussing Intersex Variations 81 Key Findings 82 Participants’ Variations 82 Variations in Family Background 86 Age of Discovery 89 Feelings about Intersex Variations 92 Preferred Language for Intersex Variations 95 5. People with Intersex Variations, Health and Medical Services 99 Key Findings 100 Physical Health Now 100 Experience of Surgical and Hormonal Interventions 101 Interventions and Informed Consent 105 Impacts of Interventions 109 Alcohol and Drug Use 113 Overall Experiences with Health Services 114 Improving Health Services 116 6. People with Intersex Variations, Wellbeing and Mental Health 119 Services Key Findings 120 Mental Health Now 120 Self-harm and Suicide 121 Overall Experiences with Mental Health Services 123 Counselling/Training on Gendered Behaviour 125 Improving Mental Health Services 127 7. People with Intersex Variations and Education 129 Key Findings 130 Education Level 130 Policies and Programs 133 Puberty/Sex Education Provision 134 Responses to Disclosures 136 School Counselling/Referrals 138 Overall Experiences with Education/School Services 139 Improving Education Services 142 8. People with Intersex Variations and Employment 145 Key Findings 146 Main Occupation 146 Income 147 Responses to Disclosures 148 Overall Impacts on Employment 150 9. Social Support for People with Intersex Variations 155 Key Findings 156 Responses from Key People in Participants’ Lives 156 Visibility of Participants’ Variations to Strangers 160 Responses from Strangers 162 Strangers, Explanations and Myths 165 Religious/Spiritual Services 166 Engaging with Community Social Groups 167 Wellbeing Impacts of Community Engagement 168 10. Sexuality, Romance and Relationships 171 Key Findings 172 Relationship Status 172 Marital Status 174 Sexuality Terms and Definitions 176 Impacts on Sexual Ability and Desire 179 Sexual Activities Engaged in 183 Sexual Protection 185 11. Fertility, Parenting and Views on Parenting 189 Key Findings 190 Fertility and Reproductive Capability 190 Disclosure to Children 193 Views on Parenting 193 12. Representation in Media, Activism and Research 197 Key Findings 198 Representation of ‘Real People’ in the Media 198 Fictional Representations in the Media 200 Representation in Activism 202 Representation in Research 206 13. Conclusion and Recommendations 209 References 227 Appendix: Glossary 241 Acknowledgments Dr Tiffany Jones is thrilled to thank and acknowledge the University of New England’s Research Services which contributed various grants towards funding her research. This project benefitted from the enthusiasm of my community reference group: Bonnie Hart – President of the Androgen Insensitivity Syndrome Support Group Australia (AISSGA), Morgan Carpenter – Director of Organisation Intersex International Australia (OII Australia), and Gavi Ansara – representing the Australian National LGBTIQ Health Alliance. No funding was accepted from their organisations by the researcher and the group were not involved in conducting or writing up of the research; these individuals (amongst others from different groups) instead gave community insights into the project’s framing of intersex issues, appropriateness of themes and word choices in the development of the questionnaire and strategies in the recruitment processes, and lastly were given an opportunity to comment on completed drafts of report chapters. They directly requested co-authorship, which was given to increase a sense of community ownership of the report hereafter and honour their assistance, however all conclusions made herein were drawn on the basis of university-based research only. I want to thank Jayne Lucke from ARCSHS and William Leonard from GLHV for their work helping me with the report, and for taking this work seriously enough to picture it within the context of various valuable next steps for the field. The research also had the support of organisations, groups, medical practitioners and individual activists all over Australia promoting the project by putting it into both professional and personal e-list mail- outs, placing advertisements on Facebook pages and websites, including items in newsletters, and letting people know by word-of-mouth. Here I thank ACON, ACT Human Rights Commission, AISSGA, Anne-Maree, x Intersex: Stories and Statistics from Australia The Australian Safe Schools Coalition, Australian X & Y Spectrum Support, The Australian and New Zealand Gender Support Group, Bodies Like Ours, Dani Wright and The Freedom Centre, Duane Duncan, Genderqueer Australia, Genetic Network of Victoria, GSMA@Queerspace, Intersex United, Klinefelter’s Syndrome Australia and SA, Laura’s Playground, Le Syndrome De Turner, Matt Tilley, Monica Bray, The National LGBTI Health Alliance, NSW ADB, OII Australia, Olivia Noto, Phoebe Hart, PCOS Australia, Polycystic Ovarian Syndrome Support Group, Reddit Intersex, SA Equal Opportunity Commission, The Safe Schools Coalition, ShineSA, Sim Kennedy, Sistergirls & Brotherboys Australia, Susan’s Place, Tony Briffa, Turner’s Syndrome Girls (XOers), Two Spirits QAHC, UNDP, UNESCO, XXY Friends, XXY/Klinefelter Syndrome Society, XXY Klinefelter’s Syndroom, YGender and many others. I thank the media/press who promoted the study through reduced advertising rates, and generous interviews and stories on the research. I especially thank ABC Radio, The Armidale Express, Estelle Boschoff, Nance Haxton, The Gay News Network, The Gay News Network’s Law Thread and many others. I also thank the medical practitioners including the doctors, endocrinologists, urologists and others who passed on information through their networks. I also thank Open Book Publishers for believing in this book and providing an innovative publishing model through which this important knowledge can be shared with readers around the world. Most vitally, the project owes its largest debt to the people with intersex variations who completed the survey. You have written yourself into history. You have asserted a voice different to current discourses dominating discussion of your experience and what it means. Your contributions to research are greatly appreciated, and I personally hope this book can in turn be useful for you in your own lives as something you and a range of stakeholders/service providers can read, share with others and benefit from