This Shadow Report has been written and submitted by Organisation Intersex International Australia Limited (“OII Australia”), a national organisation run by and for people born with intersex variations. OII Australia promotes the human rights and bodily autonomy of intersex people in Australia, and provides information, education and peer support. OII Australia is a not-for-profit company, with Public Benevolent Institution (charitable) status.
OII Australia can be contacted at PO Box 46, Newtown, NSW 2042, Australia; email firstname.lastname@example.org, and via the website at https://oii.org.au This submission is endorsed by:
The Androgen Insensitivity Syndrome 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.
The Disabled People’s Organisations Australia (“DPO Australia”), 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.
The National LGBTI Health Alliance, the national peak health organisation in Australia for organisations and individuals that provide health-related programs, services and research focused on lesbian, gay, bisexual, transgender, and intersex people (LGBTI) and other sexuality, gender, and bodily diverse people and communities.
People with Disability Australia (“PWDA”), a national disability rights and advocacy organisation, and member of DPO Australia. 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.
The Convention on the Rights of Persons with Disabilities seeks to guarantee equality before the law (article 5); ensure that children have full enjoyment “of all human rights and fundamental freedoms”, that “the best interests of the child shall be a primary consideration” and that children have the right to express their views in accordance with their age and maturity (article 7); exercise of legal capacity and equal recognition (article 12); access to justice (article 13); that persons may not be subjected to medical or scientific experimentation, torture, or cruel, inhuman or degrading treatment (article 15); that every “person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others” (article 17); respect for privacy (article 22); and the right to the enjoyment of the highest attainable standard of health without discrimination (article 25).1
A pattern of human rights abuses on infants, children and adolescents with intersex traits occurs in Australia, without any form of effective, independent scrutiny or oversight, often based on gender stereotypes, and lacking a scientific basis. Evidence of abuses includes the unnecessary sterilisation of a 5-year old child with the approval of the Family Court of Australia, and incidental disclosure in that child’s medical history of a clitorectomy and labiaplasty described by the judge, in 2016, as having “enhanced the appearance” of her genitalia. The child in Re: Carla (Medical procedure) was described as having a “sexual development disorder”,2 more usually described in clinical settings as a “disorder of sex development”. The framing of intersex variations using such terms, despite often only cosmetic (appearance “enhancing”) purposes for medical interventions, makes them a matter of concern to the Committee on the Rights of Persons with Disabilities.
In many cases, harmful practices and other human rights abuses occur despite rhetoric by Australian governments that denies or asserts changes to clinical practices, and that asserts the recognition and valuing of intersex variations.3 In May 2017, in response to questioning by the UN Committee on Economic Social and Cultural Rights, it appears that the Australian government has rejected the recommendations of a 2013 Senate Community Affairs References Committee inquiry into the involuntary or coerced sterilisation of people with disabilities, and of intersex people.4 It appears that the government may be considering the implications of recent Family Court cases,5 however, these are not new concerns. We regard this approach as inadequate, and part of a continuing pattern of deferral and delay without action.
In March 2017, more than twenty current and future leaders of the intersex human rights movement in Australia and New Zealand gathered in Darlington, Sydney, and agreed on a common platform. We respectfully request that the UN Committee on the Rights of Persons with Disabilities acknowledges that platform, the Darlington Statement,6 and asks the government of Australia:
How will the government ensure that infants, children and adolescents are not subjected to unnecessary medical or surgical treatment during infancy or childhood, guaranteeing the rights of children to bodily integrity, autonomy and self-determination. In particular, how will the government ensure the right of children born with variations of sex characteristics not undergo irreversible cosmetic interventions to “fix” sex characteristics, or otherwise assign sex, “enhance”, or reinforce a sex assignment, when sex characteristics do not fit medical norms for females or males?
Will the government criminalize non-emergency/deferrable medical interventions medical interventions, including surgical and hormonal interventions, that alter the sex characteristics of infants and children without personal consent of the recipient?
What measures will the government undertake to ensure the mandatory availability of independent, community-run counselling services for all intersex children and their parents?
An arbitrary and unclear legal distinction between “therapeutic” and “non-therapeutic” medical interventions ensures that decision-making rationales to manage physical health issues are intertwined with non-therapeutic and cosmetic rationales. How will the government ensure that medical interventions necessary for physical health are carefully distinguished from interventions designed to “normalise” bodies of children born with non-normative sex characteristics?
How will the government provide redress to people who have undergone unwanted sterilisations and other medical interventions to “normalise” sex characteristics?
Will the government commit to ensuring the development, with meaningful community participation, of appropriate, transparent, human rights-based standards of care for the treatment of persons born with sex characteristics that do not fit norms for female or male bodies?
How will the government ensure that all medical interventions where rationales or justifications are contested are subjected to independent, human rights-based scrutiny, bringing together human rights experts, clinicians and intersex-led community organisations? How will the government ensure that pros and cons for and against medical treatment will be properly ventilated and considered, including the lifetime health, legal, ethical, sexual and human rights implications?
How will the government ensure that medical and psychological professionals, and parents, are educated on bodily and sexual diversity and on human rights norms, and on the consequences of unnecessary interventions for children born with non-normative sex characteristics?
How will the government ensure that adults with intersex variations are able to freely access medical interventions to manage sex characteristics, including unwanted iatrogenic changes to sex characteristics.