Shadow report submission to the UN CRPD

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This Report was submitted by Intersex Human Rights Australia (“IHRA”), a national charitable organisation run by and for people born with intersex variations, to the UN Committee on the Rights of Persons with Disabilities (CRPD). The submission was written by co-executive director Morgan Carpenter, M.Bioeth. (Sydney), with input from the board and members of IHRA and endorsing organisations.

Organisations endorsing this submission:

AIS Support Group Australia (“AISSGA”), an intersex-led peer support organisation for people with all intersex variations, including Androgen Insensitivity Syndrome (“AIS”).

Disabled People’s Organisations Australia (“DPO Australia”) is 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.

People with Disability Australia (“PWDA”) is 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.

1. Summary

A pattern of human rights abuses on infants, children, adolescents and adults born with intersex variations occurs in Australia, without effective, independent oversight, often based on gender stereotypes, and lacking a scientific basis. Evidence includes a Family Court of Australia case Re: Carla (Medical procedure) (2016) which facilitated the unnecessary “therapeutic” sterilisation of a 5-year old child. Incidental disclosure in that child’s medical history of an unnecessary clitorectomy and labioplasty (a “vulvoplasty”) was described by the judge as follows:

Surgery already performed on Carla has enhanced the appearance of her female genitalia (at [2])
In 2014, Carla underwent two operations. In March that year, Dr B, performed a ‘clitoral’ recession and labioplasty to feminise Carla’s external appearance. (at [16])

The case is notable for presenting gender stereotypes in support of her sterilisation, including her toys and attire: Carla wore a “floral skirt and shirt with glittery sandals and Minnie Mouse underwear and had her long blond hair tied in braids”. The clinical evidence in support of her sterilisation was obsolete and incomplete. These interventions took place with parental substitute consent. The Court found that parties to the case supported surgery as in the best interests of the child, judicial oversight was not required.

As we show in this report, it appears likely that around 70 similar “vulvoplasties” take place each year. Additional types of medical intervention also occur. In 2018, a urology committee has sought to increase fees payable for the performance of paediatric vaginoplasties (construction of a vagina in a child) (Medicare Benefits Schedule Review Taskforce 2018, 127). Larger numbers of “masculinising” genital surgeries also take place (Carpenter 2018b, 471–73). CEDAW has described these as “harmful practices” in concluding observations on Australia (2018, para. 26). These harmful practices occur despite rhetoric by Australian governments that denies them or asserts changes to clinical practices (for example, Department of Communities 2012, 14), and that asserts recognition and valuing of intersex people (Carpenter 2016b).

A 2013 Senate committee inquiry made recommendations for change to clinical practice (Community Affairs References Committee, Senate of Australia 2013). The Australian government has rejected those recommendations (Attorney General’s Department 2015); federal and State governments have failed to implement them. The Family Court has been unable to perform an independent role that protects children’s rights.

A 2017 intersex community consensus statement defines a set of demands, the Darlington Statement, in response to this situation (AIS Support Group Australia et al. 2017). The UN Human Rights Committee (2017, para. 26) and CEDAW (2018, para. 26) have published recommendations for protections for intersex children. The Australian Human Rights Commission and Tasmanian Law Reform Institute have commenced studies (Australian Human Rights Commission 2018a); despite limited resources for community-led organising including an absence of core funding by governments, we are optimistic of helpful findings. However, as with the 2013 Senate inquiry, 2017 Human Rights Committee recommendations, and 2018 CEDAW recommendations, implementation is not assured.

In 2019 the Australian government cited Re: Carla (Medical procedure), in its submission to the Committee on the Rights of Persons with Disabilities to illustrate a claim that the Family Court has “affirmed that any medical procedure resulting in sterilisation of a child must be therapeutic in nature for it to be within the bounds of permissible parental authority and not require court authorisation” (Australian Government 2019, para. 229), implying that Carla’s sterilisation was “therapeutic”, and omitting mention of serious human rights concerns about the circumstances of the case (Carpenter 2018b, 2018c; M. Jones 2018; Kelly and Smith 2017; Richards and Pope 2017).

2. Recommendations

We respectfully urge the Committee to make strong recommendations in line with recommendations of other Treaty Bodies, such as CEDAW:

  1. “Adopt clear legislative provisions that explicitly prohibit the performance of deferrable surgical or other medical procedures” without personal informed consent, “provide adequate counselling and support for the families of intersex children and provide redress to intersex persons having undergone such medical procedures” (based on Committee on the Elimination of Discrimination against Women 2018, para. 26)
  2. Ensure that all necessary medical interventions to modify the sex characteristics of children with disabilities and variations of sex characteristics are subject to independent human rights-based oversight.
  3. Ensure that medical and psychological professionals, and parents, are educated on bodily and sexual diversity, on human rights norms, and on the consequences of unnecessary interventions for children born with variations of sex characteristics (based on Committee against Torture 2011, para. 20; Committee on the Rights of the Child 2016, para. 40).
  4. Ensure that adults with variations of sex characteristics are able to freely access healthcare to manage consequences of iatrogenic (medically induced) changes to sex characteristics.

More information

Read our full submissions:

IHRA CRPD submission, 2019 (DOCX format)
IHRA CRPD submission, 2019 (PDF format)

IHRA also endorsed a joint civil society submission to the CRPD.