Submission to the AHRC on protecting rights in medical settings
We are pleased to share our submission to the Australian Human Rights Commission in respect of its inquiry on protecting the human rights of people born with variations in sex characteristics in the context of medical interventions.
The submission has been kindly endorsed by the AIS Support Group Australia (AISSGA), Disabled People’s Organisations Australia (DPOA), Queensland LGBTI Legal Service, and People with Disability Australia (PWDA). It was written by Morgan Carpenter, with input from the board and members of IHRA and from representatives of the AIS Support Group Australia and People with Disability Australia.
The introduction to the report
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.
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