Intersex Human Rights Australia

The Age newspaper printed two articles on intersex by journalist Andrew Bock on Thursday this week: It takes more than two and Call to end intersex genital operations.

The news article contains a call by OII Australia and the AIS Support Group Australia to end appearance-related genital surgeries on intersex infants. This reflects our call in submissions to the current Senate Inquiry on involuntary and coerced sterilisation.

We hope that friends, supporters and allies will join us in this call, and make support known to the senators engaged in the Inquiry, and to MPs and other decision makers. Health is also a state, as well as a Commonwealth, matter.

Andrew Bock had unprecedented access to intersex people through the course of the articles’ research, as well as access to current and former staff at the Royal Children’s Hospital, Melbourne. We thank Andrew for the opportunity to put information on intersex into the public eye.

Some of the content in the feature article is a matter of concern.
The print and original online article misstated Tony’s gender in the same paragraph as a comment saying Tony prefers no pronouns. Mani’s organisation is misnamed.

Even more significantly, readers come away with the notion that surgeries have improved to the point of being non-controversial when we have no data to support that, and plenty that contradicts this statement.

Associate Professor Sonia Grover, director of the department of gynaecology at the Royal Children’s Hospital, says studies show girls with CAH would identify as females and want to have periods and sex later in life and that surgery done early produced good results. All infant surgery is conducted with the informed consent of parents.

“While we have the data to say they are going to end up identifying as females … and we have evidence that surgical outcomes are good, and sensory outcomes and sexual function are good, where’s the pressure to change the practice?” Grover says.

We dispute these statements, and have the medical data to support our analysis. We know of numerous cases of “girls with CAH” (46,XX and 45,XO CAH) where childhood assignment as female is/would be wrong. There is medical evidence that assignments are wrong in at least 8% of cases. We have evidence from RCH and elsewhere that patient outcomes are poor. Evidence is provided in our submissions to the Senate Inquiry on sterilisation.

The press coverage states that gonadectomies (sterilisation) are no longer carried out on people with Complete AIS (CAIS). This is the first time that we have heard this statement. According to Andrew Bock, Professor Grover claims no such surgeries have taken place in the last 10 years. However, the official policy of the Royal Children’s Hospital stated, just 4 years ago in 2009, that all 46,XY ‘DSD’ intra-abdominal gonads are removed – by definition this includes women with CAIS.

We note that the only support given for infant surgeries by a member of an intersex support group was by a parent:

Michelle Hoare, president of the Congenital Adrenal Hyperplasia Support Group of Australia, says: “You don’t want your child to look different. That’s one of parents’ main concerns.”

To our minds, such statements show what we are up against in our campaign for bodily autonomy.

Finally, going public about one’s intersex status is a hugely demanding step and we warmly thank all the people who contributed to Andrew Bock’s research, whether or not they were quoted in the final articles. We also thank Andrew for his attempts to properly represent the needs and concerns of intersex people.

Articles by The Age

• The Age – It takes more than two
• The Age – Call to end intersex genital operations

Download the Inquiry reports on involuntary or coerced sterilisation

• Our initial thoughts on the Senate report, “Involuntary or coerced sterilisation of intersex people in Australia”, 25 October 2013
• Intersex report: Download report on the involuntary or coerced sterilisation of intersex people, 25 October 2013
• People with disabilities report: Download report on the involuntary or coerced sterilisation of people with disabilities, 17 July 2013

Recent developments

• German proposals for a “third gender” on birth certificates miss the mark
• Clinicians acknowledge lack of justification for surgeries on intersex infants in Australia a compilation of quotes from submissions by the Australasian Paediatric Endocrine Group and the Royal Children’s Hospital, 15 July 2013
• Update on Senate Inquiry on involuntary and coerced sterilisation 13 July 2013, including data on Female Genital Mutilation

OII Australia submissions

• About our fifth, concluding, submission to the Inquiry
• Our fifth submission, dated 29 August 2013 (PDF) a concluding submission, taking into account recent developments
• About our fourth submission a response to the submission by the Australasian Paediatric Endocrine Group, and new data from the Council of Europe
• Fourth submission, dated 30 June 2013 (PDF)
• About our third submission focusing on the rationales for involuntary surgery on intersex infants, and comparisons with Female Genital Mutilation; also presenting information on the M.C. legal case in the US and the 2005 City of San Francisco human rights investigation
• Third submission, dated 3 June 2013 (PDF)
• On our second submission which focused on a case detailed by the Chief Justice of the Family Court, but also the new Victorian Health Department report, and the Senate’s report on the Human Rights and Anti-Discrimination Bill
• Second submission, dated 8 March 2013 (PDF)
• About our first submission
• First OII Australia submission, dated 15 February 2013 (PDF)

AISSGA and National LGBTI Health Alliance submissions

• AISSGA submission, dated 12 March 2013 (PDF)
• Third National LGBTI Health Alliance submission, dated 9 July 2013 (PDF)
• Second National LGBTI Health Alliance submission, dated 15 April 2013 (PDF)
• First National LGBTI Health Alliance submission, dated 12 March 2013 (PDF)

Clinician submissions

• Australasian Paediatric Endocrine Group (APEG), dated 27 June 2013 (PDF)
• Royal Children’s Hospital (RCH), dated 10 July 2013 (PDF)

Legal submissions

• Office of the Public Advocate, Victoria, dated 13 September 2013 (PDF)
• Ms Diana Bryant AO, Chief Justice of the Family Court of Australia, first submission dated 22 February 2013 (PDF)
• Ms Diana Bryant AO, Chief Justice of the Family Court of Australia, second submission dated 2 September 2013 (PDF)

Documents tabled by OII Australia

• Swiss National Advisory Commission on Biomedical Ethics, ‘On the management of differences of sex development’ (PDF)
• Anne Tamar-Mattis (Advocates for Informed Choice), ‘Report to the Inter-American Commission on Human Rights: Medical Treatment of People with Intersex Conditions as a Human Rights Violation’ (PDF)
• Victoria, Department of Health, ‘Decision-making principles for the care of infants, children and adolescents with intersex conditions’ (PDF)
• OII Australia, ‘Response to Victorian Health Department framework document’ (PDF)
• National LGBTI Health Alliance policy statement on the Victorian Department of Health approach to intersex young people (PDF)
• City and County of San Francisco, Report of a 2005 Human Rights Investigation into the medical “normalization” of intersex people (PDF)

More information

• All submissions to the Senate Inquiry on involuntary sterilisation
• Terms of reference for the Senate Inquiry
• Transcript of the public oral hearing on intersex issues on 28 March 2013 (HTML and PDF) witnesses represented OII Australia, AISSGA and the National LGBTI Health Alliance
• Article on the public hearing of the Senate Inquiry on involuntary sterilisation
• Opening statement at the Senate hearing on involuntary or coerced sterilisation, 29 March 2013
• Press coverage of the intersex aspects of the Senate Inquiry, by The Age newspaper, 20 June 2013