Shadow report submission to the Committee on the Rights of Persons with Disabilities

OHCHR
OII Australia has submitted a shadow report to the UN Committee on the Rights of Persons with Disabilities.

The shadow report has been kindly endorsed by the Androgen Insensitivity Syndrome Support Group Australia, Disabled People’s Organisations of Australia, National LGBTI Health Alliance, and People with Disability Australia.

It makes a number of recommendations, based upon the 2017 Darlington Statement by Australian and New Zealand intersex advocates, and it reports on the federal policy context, judgments and statements by the Family Court of Australia, and several States and Territories including Victoria, ACT, New South Wales, Queensland and South Australia.

Overall, the document summarises the current situation for intersex people, in particular, the continued so-called “normalisation” of intersex bodies, claims of clinical consensus, the absence of empirical evidence for clinical practices, and the absence of any recognition of our right to bodily autonomy. The report provides evidence of continuing harmful practices in Australian hospitals, with the support of Australian governments and the Family Court.

Summary

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.

Recommendations

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:

  1. 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?
  2. 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?
  3. What measures will the government undertake to ensure the mandatory availability of independent, community-run counselling services for all intersex children and their parents?
  4. 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?
  5. How will the government provide redress to people who have undergone unwanted sterilisations and other medical interventions to “normalise” sex characteristics?
  6. 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?
  7. 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?
  8. 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?
  9. 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.

UPDATE

On 20 September, the Committee on the Rights of Persons with Disabilities published a List of issues prior to reporting, for the Australian government to respond to. It states:

Protecting the integrity of the person (art. 17)

20. Please provide information on the measures taken to harmonize the legal frameworks at the national, state and territory levels that, in the absence of the free, prior and informed consent of the person concerned, prohibit the following:

(a) Sterilization of children and adults with disabilities;

(b) Administration of unnecessary medical interventions, with particular attention to an individual’s sexual and reproductive health and to people born with variations of sex characteristics.

OII Australia thanks the Committee for this request.

More information

Note: in comments to the UN Committee on Economic, Social and Cultural Rights in May 2017, published in a transcript dated 9 June 2017, it appears that the Australian government has stated to the UN that transgender protocols apply to children with intersex variations. This is a misrepresentation of the facts, as should be clear from this Shadow Report. Further, this kind of misrepresentation of intersex as a transgender issue makes it hard for us to talk about intersex issues and be comprehended, and it directly affects families and individuals with intersex variations.

Notes

[1] United Nations. Convention on the Rights of Persons with Disabilities [Internet]. Geneva: United Nations; [cited 2015 Mar 23]. Available from: http://www.un.org/disabilities/convention/conventionfull.shtml
[2] Family Court of Australia. Re: Carla (Medical procedure) [2016] FamCA 7. Available from http://www.austlii.edu.au/cgi-bin/sinodisp/au/cases/cth/FamCA/2016/7.html
[3] Carpenter M. The human rights of intersex people: addressing harmful practices and rhetoric of change. Reproductive Health Matters. 2016;24(47):74–84.
[4] https://twitter.com/deanpwda/status/869848554617151488
[5] https://twitter.com/deanpwda/status/869850421497655296
[6] Androgen Insensitivity Support Syndrome Support Group Australia, Intersex Trust Aotearoa New Zealand, Organisation Intersex International Australia, Black E, Bond K, Briffa T, et al. Darlington Statement [Internet]. 2017 [cited 2017 Mar 10]. Available from: https://oii.org.au/darlington-statement/