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Ihra-20180930 Ahrc Intersex Human Rights Australia September 2018 30 September 2018 Submission to the Australian Human Rights Commission on protecting the rights of people born with variations in sex characteristics in the context of medical interventions 1 Authors and endorsements The submission was written by co-executive director Morgan Carpenter, M.Bioeth. (Sydney), with input from the board and members of Intersex Human Rights Australia, and from representatives of the AIS Support Group Australia and People with Disability Australia. Please contact [email protected] or 0405 615 942 for further information or inquiries. Intersex Human Rights Australia (IHRA) is a national intersex-led organisation that promotes the human rights (including the bodily autonomy) of people born with intersex variations. Formerly known as Organisation Intersex International (OII) Australia, IHRA is a not-for-profit company, with Public Benevolent Institution (charitable) status: http://ihra.org.au. This submission is endorsed by: The AIS Support Group Australia (AISSGA), a peer support, information and advocacy group by and for people affected by androgen insensitivity syndrome (AIS) and/or related intersex variations and variations of sex characteristics, and their families: http://aissga.org.au Disabled People’s Organisations Australia (“DPOA”), a national coalition of Disabled People’s Organisations, which are run by and for people with disability and grounded in a normative human rights framework: http://www.dpoa.org.au The LGBTI Legal Service Inc, a Queensland non-profit community-based legal service: https://lgbtilegalservice.org.au People with Disability Australia (“PWDA”), a national disability rights and advocacy organisation, and member of DPOA. PWDA’s primary membership is made up of people with disability and organisations primarily constituted by people with disability. PWDA also have a large associate membership: http://pwd.org.au Page 1 of 99 Intersex Human Rights Australia September 2018 2 Introduction We thank the Australian Human Rights Commission for this important and welcome opportunity to make a submission to the inquiry on protecting the rights of people born with variations of sex characteristics in the context of medical interventions. Intersex people in Australia are routinely subject to medical interventions without personal informed consent, typically in infancy, childhood or adolescence. Intersex-led organisations including Intersex Human Rights Australia and the AIS Support Group Australia are aware of this through ongoing relationships and contact with intersex people, parents and family members, and clinicians. Much of this evidence is confidential. Published information can (and has) routinely been disregarded as anecdotal, as relating to “obsolete” clinical practices that took place “in the past” (without apology or redress), or as isolated incidents. Clinical practices in relation to intersex people have historically relied upon a lack of transparency. In the latter half of the 20th century, this included a deliberate policy of concealment of diagnostic information in order to promote “normal” psychological development (Chase 1998; Conn, Gillam, and Conway 2005; Kirkland 2017). This still impacts upon community development, as well as affecting personal health and wellbeing. The NZ Office of the Privacy Commissioner has highlighted that progress in changing this paradigm is variable (Office of the Privacy Commissioner 2018). Lack of transparency and accountability, and unsubstantiated assurances of change, have prevented progress to ensure protection of the human rights of people born with variations in sex characteristics. In recent times, we have become able to present incontrovertible evidence of current practices. These are described in Family Court cases cited in the Commission’s consultation paper (Australian Human Rights Commission 2018), in the International Classification of Diseases (Carpenter 2018c), and in research papers (Intersex Human Rights Australia 2018a; Carpenter 2018a). Data available suggest that hundreds of relevant surgeries happen each year (Carpenter 2018a). These practices continue despite a rhetoric of inclusion, recognition and support by governments for LGBTI populations, and also a series of guidelines, principles and statements by medical bodies and governments that have presented positions on human rights violations in medical settings, but which have been disregarded or co-opted. At the same time, the intersex human rights movement has become better organised, including in the development and signing of the Darlington Statement, a 2017 community consensus statement (Androgen Insensitivity Syndrome Support Group Australia et al. 2017). In this submission we outline our responses to questions asked in the Commission’s consultation paper on protecting the rights of intersex persons/persons born with variations in sex characteristics in the context of medical interventions. We recommend a criminal prohibition of deferrable medical interventions, associated with transparent and accountable human rights-affirming oversight of relevant medical interventions and standards of care. We also call for resourcing and inclusion in all processes of affirmative, intersex-led peer support and systemic advocacy. Page 2 of 99 Intersex Human Rights Australia September 2018 3 Contents 1 Authors and endorsements .......................................................................................................... 1 2 Introduction .................................................................................................................................. 2 3 Contents ........................................................................................................................................ 3 4 Human rights and the principles we apply in this submission ...................................................... 5 4.1 UN Treaties and Treaty Body observations .......................................................................... 5 4.1.1 The International Covenant on Civil and Political Rights ............................................. 5 4.1.2 The International Covenant on Economic, Social and Cultural Rights ......................... 6 4.1.3 The Convention against Torture .................................................................................. 6 4.1.4 The Convention on the Rights of Persons with Disabilities .......................................... 7 4.1.5 The Convention on the Rights of the Child ................................................................... 9 4.1.6 The Convention on the Elimination of Discrimination against Women ..................... 10 4.2 Senate Committee report on forced sterilisation .............................................................. 10 4.3 The Darlington Statement .................................................................................................. 12 4.4 The Yogyakarta Principles plus 10 ...................................................................................... 14 4.4.1 Principle 32: The Right to Bodily and Mental Integrity .............................................. 15 4.4.2 Principle 37: The Right to Truth ................................................................................. 16 4.4.3 Additional obligations ................................................................................................ 18 5 Terminology ................................................................................................................................ 18 5.1 Question 1: Terminology .................................................................................................... 18 5.1.1 Describing the population ......................................................................................... 18 5.1.2 Intersex and new sex classifications .......................................................................... 24 5.1.3 Commission role in relation to terminology .............................................................. 24 5.1.4 This consultation ........................................................................................................ 25 5.1.5 The universality of human rights ............................................................................... 26 6 Understanding lived experiences ................................................................................................ 28 6.1 Question 2: Medical experiences ....................................................................................... 28 6.2 Questions 3 and 4: Data sources ........................................................................................ 28 6.2.1 Clinical data ............................................................................................................... 28 6.2.2 A policy of concealment ............................................................................................ 31 6.2.3 Disclosure of practices during the 2013 Senate inquiry ............................................ 33 6.2.4 Population data ......................................................................................................... 33 6.2.5 Clinical studies with relevance to clinical decision-making and beliefs ..................... 34 6.2.6 LGBTI studies ............................................................................................................. 36 6.2.7 Legal case studies .....................................................................................................
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