The Senate’s community Affairs Reference Committee is currently conducting an inquiry into the involuntary or coerced sterilisation of people with disabilities, and intersex people. The deadline for submissions was 12 March, and the Committee has just published a supplementary submission (PDF) by OII Australia, alongside submissions by the AISSGA, People with Disabilities Australia, the National LGBTI Health Alliance, and the Chief Justice of the Family Court of Australia, amongst many others.
Our initial submission was made on 15 February, and our supplemental submission has been necessitated by 3 publications since then:
- The Senate’s Legal and Constitutional Affairs Legislation Committee report on the Exposure Draft of the Human Rights and Anti-Discrimination Bill, on 21 February.
- A submission to the senate inquiry by the Hon. Diana Bryant AO, Chief Justice of the Family Court of Australia (large PDF), dated 22 February.
- The publication on 27 February of a framework document by Victoria Health Department entitled “Decision-making principles for the care of infants, children and adolescents with intersex conditions”.
The documents are unrelated but, individually and together, they highlight issues of great relevance to the inquiry and to our initial submission.
Victorian Health Department framework document
In our submission we note the major, but significantly incomplete, improvements to decision making around healthcare for intersex kids in Victoria. In part, the submission is a response to the framework document.
Our concerns about “psychosocial” rationales remain. These rationales relate to an individual’s position in a family and in society, and social expectations of the individual’s role in those environments. They mean, for example, that a clitorectomy will be considered “therapeutic” if it is deemed too large for an intersex girl infant to “have the appearance of” a girl.
Clitorectomy, sterilisation and the Family Court
The larger part of our submission focuses on the submission of the Chief Justice of the Family Court. We note an illuminating partisan (and misquoted) usage of medical language, and an approach that demonstrates what the UN Special Rapporteur on Torture (PDF) described in February 2013 as a “structural inequality”:
Structural inequalities, such as the power imbalance between doctors and patients, exacerbated by stigma and discrimination, result in individuals from certain groups being disproportionately vulnerable to having informed consent compromised.
The Chief Justice included reference to three cases affecting intersex kids in her submission. The first of those is “In the Matter of the Welfare of a child A (1993) FLC 92-402 (per Mushin J)”:
5. At the time of A’s birth he was diagnosed as suffering from a condition known as congenital adrenal hyperplasia…
9. The application which is made by the mother seeks authorisation from the court that A be permitted to undergo bilateral mastectomies, a hysterectomy and oophorectomy…
10. The background for this is well expressed by the surgeon. His report, to the extent that it is relevant, is in the following terms:
￼Following investigation after birth, this child was
correctly assessed as being a genetic female with an
￼extreme degree of masculinization. The degree of
￼masculinization is variable and depends on the severity of
￼the original abnormality in the adrenal gland. In some
￼children this is mild and in others it is severe. However,
￼in all cases it would be standard medical practise (sic) to
raise the child as a female with a potential for normal
female fertility. The genitalia are therefore operated on
in the postnatal period to make them feminine in
appearance. This advise (sic) and treatment was carried
out in (A’s) early years and she had genital reconstruction
to give her a feminine appearance. She was also given
cortisone hormone treatment to replace the absent hormone
and prevent any further masculine hormones being produced
by the abnormal adrenal gland…
12. Further in that report the endocrinologist states:
As (A’s) endocrinologist, I consider her to be completely
￼male in her outlook due to the prenatal and postnatal
￼exposure to excessive levels of adrenal androgen. I do not
￼believe that this situation is reversible. If a
￼satisfactory operation to make male genitalia can be
￼performed, I believe that (A) should have it…
13. I am critical of both the parents, and particularly the mother, that the treatment recommended by the doctors at the time of the A’s birth was not pursued. It appears on the basis of the material which is available to me that had that treatment been undertaken it may well have been possible to avoid the appalling situation which has now arisen and in respect of which I am asked to make this decision.
14. …A has already had suicidal thoughts arising directly out of the very ambiguous situation in which he finds himself.
We summarise our analysis of the case:
- The case describes an individual aged 14 3⁄4 who was treated since infancy under the standard “therapeutic” protocol for their diagnosis of Congenital Adrenal Hyperplasia (46,XX CAH).
- The “psychosocial” therapeutic rationale for treatment involved a clitorectomy/removal of phallus, and irreversible genitoplasty during infancy, to give a “feminine appearance”.
- In other 46,XX children this would commonly be described as “female genital mutilation”.
- The case was brought before the court to provide for surgeries to enable the child to live as male, i.e. the original sex-of-rearing assignment, and the postnatal surgery “to make them feminine in appearance” were inappropriate.
- Reassignment was given to require sterilisation through oophorectomy, even though there’s no evidence that this was necessary to enable male sex of living.
- The child was suicidal.
- The judge in the case expressed no critical evaluation of the validity of the medical protocol put forward in this case nor more generally; the standard therapeutic protocol was regarded as unremarkable. Why was the prior assessment of the child as female ‘correct’ in the face of the case under review?
- The judge was egregious in criticism of the parents (why also “particularly the mother”?) in an assertion that they had “failed” to properly suppress androgen production through postnatal medication, as if this might have an impact. It is strongly implied (in point 13) that the child’s self assessed gender identity was a consequence of this. We are unaware of any evidence to support this, while the evidence on adult gender identities refutes such simplistic arguments.
- This case was endorsed by the Chief Justice in February 2013, through her discussion of it in her submission on involuntary sterilisation to the Senate.
We also note that 1 in 10 children with 46,XX CAH will go as far as to permanently change gender assignment as adults.
More details and explanatory information on this, and the other recent developments, can be found in our full supplemental submission. Our initial submission is also available, and is not replaced by this later additional document.
The court system
The absence of community resourcing, our absence from Family Court processes, our historic absence from dialogue over treatment protocols all create a situation where medical evidence supplied has been considered uncritically and without any evaluation of alternative medical data or community voices.
The case mentioned by the Chief Justice of the Family Court in her submission to the Senate Inquiry demonstrates the failure of the court system and the government to deal with structural inequalities that impact directly on the lives of intersex people in Australia. We believe that the court system has been deficient and lacks the competencies required. We believe that this structural inequality must be addressed.
We support the establishment of an expert tribunal to adjudicate on such cases in place of the Family Court, but only where the tribunal can effectively include resourced community participation on an equal footing.
The nature of therapeutic treatment
Most cases where we have concern do not progress to the Family Court, but are managed according to standard therapeutic protocols. It is in this area that we have the most significant concerns.
If therapeutic protocols for 46,XX CAH children are to regard them uncritically as girls, then why does legislation prohibiting female genital mutilation not apply? With what degree of “success” or “necessity” does a cosmetic but irreversible surgical treatment become “therapeutic”?
Why is sterilisation considered necessary to live as a different gender to that previously (legally, surgically and hormonally) assigned, especially when the patient is not an adult able to freely express their own preferred identity?
Why do gonadectomies take place on infants when, as we pointed out in our initial submission, the standard protocol in London is to wait until the patient is 18, post puberty and with informed consent?
Excluding psychosocial rationales for treatment
We believe that the nature of what is regarded as a therapeutic protocol needs to be changed to exclude psychosocial rationales until an intersex person is old enough to be able to consent.
‘Looking different’ should not be a reason for irreversible genital surgery.
Clitorectomies and related surgeries must no longer be carried out on intersex infants anywhere in Australia; they should be regarded in the same light as clitorectomies on non- intersex infants.
Gonadectomies should be carefully justified, avoided if sex-of-rearing changes, and generally take place once a patient can give fully informed consent.
Counselling, education and consultation
Protocols should focus first and foremost on counselling and education, including family and patient counselling. Protocols must be kept under review, with full community participation in the review and appraisal process.
The lack of good data is a common theme in studies on intersex health, including the lack of useful sample sizes, non-standardised measures, lack of control groups, and selection bias in research. We wish for children to continue to receive a male or female assignment with recognition that this is mutable but, independent of this, there is a need for children and adults with an intersex status to be tracked through the health system, and more broadly.
We believe that the issue of an apology and redress for people who have been through non- consensual and inappropriate surgical and hormonal treatments must be considered.
The intersex community must be resourced to support a more active role in our own health care management, and in policy development.
Both sterilisation inquiry submissions were written by Morgan Carpenter, who would like to thank everyone who assisted during their drafting or the consultation process, including OII Australia members but also AIC, AISSGA, HRLC, PWDA and others.
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
- 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)
- Australasian Paediatric Endocrine Group (APEG), dated 27 June 2013 (PDF)
- Royal Children’s Hospital (RCH), dated 10 July 2013 (PDF)
- 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)
- 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