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 shadow report 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 the submission were:
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.
IHRA also endorsed a joint submission by Australian Disabled People’s Organisations (DPOs), Disability Representative Organisations (DROs) and Disability Advocacy Organisations, available on the website of DPO Australia. IHRA collaborated with DPO Australia in the creation of a factsheet on the forced sterilisation of people with disability and people with intersex variations.
In September 2019, the Committee published strong concluding observations, also detailed below.
These are the summary and recommendations in the IHRA submission to the Committee.
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 )
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 )
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).
We respectfully urge the Committee to make strong recommendations in line with recommendations of other Treaty Bodies, such as CEDAW:
- “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)
- 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.
- 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).
- 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.
Read our full submissions:
Disability Rights Now submission
IHRA endorsed a joint submission by Australian Disabled People’s Organisations (DPOs), Disability Representative Organisations (DROs) and Disability Advocacy Organisations, available on the website of DPO Australia.
IHRA collaborated with DPO Australia in the creation of a factsheet on the forced sterilisation of people with disability and people with intersex variations.
Committee concluding observations
On 24 September, the Committee on the Rights of Persons with Disabilities issued concluding observations to the Australian government. They include the following in relation to protecting the integrity of the person:
The UN Committee on the Rights of Persons with Disabilities has made strong recommendations to the Australian government on forced medical practices:
Protecting the integrity of the person (art. 17)
33. The Committee is seriously concerned about:
(a) Ongoing practice of forced sterilization, forced abortion and forced contraception of persons with disabilities, particularly women and girls, without their free and informed consent, which remains legal;
(b) Unregulated use of involuntary surgery on infants and children born with variations in sex characteristics, and other intrusive and irreversible medical interventions, without their informed consent or evidence of necessity.
34.The Committee urges that the State party to:
(a) Review and amend the Family Law Rules 2004 relating to Medical Procedure Applications in line with the Convention and adopt uniform legislation prohibiting, in the absence of free and informed consent, the sterilization of adults and children, the administration of contraception and abortion procedures on women and girls with disability;
(b) Adopt clear legislative provisions that explicitly prohibit the performance of unnecessary, invasive and irreversible medical interventions, including surgical, hormonal or other medical procedures on intersex children before they reach the legal age of consent, the electroconvulsive therapy, without their free and informed consent of the person concerned; also provide adequate counselling and support for the families of intersex children and redress to intersex persons having undergone such medical procedures.
The concluding observations can be downloaded from https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRPD%2fC%2fAUS%2fCO%2f2-3&Lang=en