No 3 Senate Report on Involuntary or Coerced Sterilisation of Intersex People in Australia

Another development during 2013 which was, frankly, far more important than anything related to marriage equality was the Senate Standing Committee on Community Affairs’ Report on Involuntary or Coerced Sterilisation of Intersex People in Australia, handed down on 25 October (link here: http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Involuntary_Sterilisation/Sec_Report/~/media/Committees/Senate/committee/clac_ctte/involuntary_sterilisation/second_report/report.ashx).

For people unaware (as, being perfectly honest, I was until around this time last year), the vast majority of intersex children are subjected to involuntary surgeries shortly after birth, designed to ‘normalise’ them according to the expectations of either their parents, their doctors, or society at large (or, more likely, a combination of all three) that they should conform to a man/woman binary model of sex.

These surgeries, obviously performed without the infant/child’s consent, can involve sterilisation, as well as other ‘cosmetic’ (ie unnecessary), largely irreversible surgery on genitalia to make it fit within the idea of what a man or woman ‘should’ be (completely ignoring the fact that the infant doesn’t fit into that model, nor should that model be imposed upon them, and certainly not without their informed consent).

The fact that these surgeries continue to the present day is a major human rights scandal. The idea that people are having such major, lifelong decisions made for them by doctors and parents (who are often persuaded by the views of the medical profession) is a horrifying one.

It is something that groups like Organisation Intersex International Australia (OII Australia), and others have been campaigning on for some time. And in 2013 the members of the Senate Standing Committee on Community Affairs were listening.

They commenced an inquiry on September 20 2012, looking at the general topic of involuntary or coerced sterilisation of people with disabilities in Australia. Through the course of this inquiry, and the advocacy of groups like OII Australia, they came to see the significance of the continuing violation of the rights, including the bodily integrity, of young intersex people.

So much so, that they separated out the issues surrounding intersex people and, after handing down their general report on 17 July 2013, devoted a second report entirely to these issues. In their conclusion, they made some very encouraging observations about the need to break down the barriers of thinking around sex. In particular, they noted:

“ 6.29      Least well understood is the challenge that intersex variation presents to the rest of society. It is the challenge involved in recognising that genetic diversity is not a problem in itself; that we should not try to ‘normalise’ people who look different, if there is no medical necessity. It is the challenge of understanding that everyone does not have to fit into fixed binary models of sex and gender, and that nature certainly does not do so.

6.30      A key example of our lack of understanding of how to respond to intersex diversity can be seen in the clinical research on sex and gender of intersex people. The medical understanding of intersex is so strongly focussed on binary sex and gender that, even though its subjects have some sort of sex or gender ambiguity, the committee is unaware of any evidence to show that there are poor clinical or social outcomes from not assigning a sex to intersex infants.[19] Why? Because it appears never to have even been considered or researched. Enormous effort has gone into assigning and ‘normalising’ sex: none has gone into asking whether this is necessary or beneficial. Given the extremely complex and risky medical treatments that are sometimes involved, this appears extremely unfortunate. [emphasis added]”

 

Which is a pretty radical sentiment for a cross-party group of Senators to put their names to. The Committee also made recommendations designed to at least reduce the incidence of coerced sterilization (and surgery on genitalia), as well as increasing the support available to parents of intersex children. Specifically:

3.130    The committee recommends that all medical treatment of intersex people take place under guidelines that ensure treatment is managed by multidisciplinary teams within a human rights framework. The guidelines should favour deferral of normalising treatment until the person can give fully informed consent, and seek to minimise surgical intervention on infants undertaken for primarily psychosocial reasons. [emphasis added]

 

Recommendation 11

5.70    The committee recommends that the provision of information about intersex support groups to both parents/families and the patient be a mandatory part of the health care management of intersex cases.

Recommendation 12

5.72    The committee recommends that intersex support groups be core funded to provide support and information to patients, parents, families and health professionals in all intersex cases.”

These recommendations, and the Report more broadly, have been received positively by the National LGBTI Health Alliance, and by OII Australia, who released a statement responding to the report on 29 October (link here: http://oii.org.au/24058/statement-senate-report-involuntary-or-coerced-sterilisation-intersex-people/). OII President Morgan Carpenter said:

“This report represents the first opportunity, after many years of campaigning, to place our most serious human rights concerns before Parliament. Medical interventions on intersex infants, children and adolescents have been taking place in Australia with insufficient medical evidence, and insufficient emphasis placed on the human rights of the child and future adult. Genital surgeries and sterilisations create lifelong patients and there’s significant evidence of trauma.

At a first view, many of the headline conclusions and recommendations are positive – accepting our recommendations on minimising genital surgery, concern over the lack of adequate data, insufficient psychosocial support, and concern that decision making on cancer risk is insufficiently disentangled from wider concerns about a person’s intersex status itself; we also broadly welcome the recommendations relating to the prenatal use of Dexamethasone” and, went on to say:

 

“OII Australia warmly welcomes this crucial report. It addresses the main concerns of the intersex community. We welcome that this is a joint report with cross-party support, and we would like to thank the Committee members and staff for their hard work.

We also give particular thanks to our friends in the Androgen Insensitivity Syndrome Support Group Australia (AISSGA), the National LGBTI Health Alliance, and the other people and organisations who took time to make relevant submissions to the inquiry, or who participated in the hearing on intersex issues.

We look forward to working with clinicians, Commonwealth and State and Territory Health Departments, and the Commonwealth Attorney General’s Department, to improve health outcomes for intersex infants, children, adolescents and adults.”

Which is I guess the crucial point – it is up to multiple levels of Government, and the health profession, to implement the Committee’s recommendations, and make substantial (and long overdue) improvements in this area. And it is up to groups like OII Australia – together with support from their allies throughout the LGBTI, and wider, community – to make sure that they do.

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Submission to Involuntary and Coerced Sterilisation Senate Inquiry

Last week, in amongst the craziness of the Sex Discrimination Amendment Bill, and the US Supreme Court marriage equality decisions, the Organisation Intersex International (OII) Australia put out the call for people to make submissions to the Senate Community Affairs Committee Inquiry into the Involuntary and Coerced Sterilisation of People with Disabilities in Australia.

So, on Saturday afternoon I put together the below submission. Given the rush it is admittedly not my best work, but I am glad to have put something in with respect to this important inquiry, and today OII Australia tweeted that they appreciated my effort, so that’s good enough for me. The submission was published on the Senate’s website this morning, so here it is:

I would like to make a brief submission in relation to this important inquiry.

Specifically, in my submission I will address the second term of reference for the inquiry, namely:

2. Current practices and policies relating to the involuntary or coerced sterilisation of intersex people, including

a) sexual health and reproductive issues; and

b) the impacts on intersex people.

In doing so, I will be drawing heavily on the submission provided by the Organisation Intersex International Australia.

I am writing this submission as a gay man, and someone who does not have any personal experience of what it is like to be an intersex individual. However, that does not mean I cannot recognise the fundamental human rights of others, or support broad principles according to which each and every person should be able to live their life.

These principles include the right to personal autonomy – to have physical control over one’s body – including the right to determine whether to consent, or not to consent, to medical procedures (wherever possible). This is especially important for procedures which can have long-term, and often permanent or irreversible, impact on core matters such as sex and reproduction. These principles also include the right for individuals to be different, including differences of sexual orientation, gender identity and intersex status, and for these differences to be respected by the medical profession, the Government and society at large.

Sadly, it seems that for far too many intersex Australians they have been unable to live their lives with the benefit of these principles or rights.

It is disturbing to read the following quote from pages 3 and 4 of the OII submission dated 15 February 2013:

“Every individual member of OII Australia has experienced some form of non-consensual medical intervention, including the following:

  • Pressure to conform to gender norms and to be a “real man” or “real woman”.
  • Involuntary gonadectomy (sterilisation) and clitorectomy (clitoris removal or reduction) as an infant, child or adolescent.
  • Medical and familial pressure to take hormone treatment.
  • Medical and familial pressure to undertake genital “normalisation” surgery.
  • Surgical intervention that went outside the terms of consent, including surgery that was normalising without consent.
  • Disclosure of non-relevant medical data to third parties without consent.”

For any individual to experience any of these interventions is disturbing. That every member of OII Australia has experience of at least one (and possibly more than one) is genuinely shocking.

That is why I have no compunction in backing the recommendations made by OII in their submission. In particular, I support their Medical protocol recommendations on pages 20 and 21, namely:

“1. Medical intervention should not assume crisis in our difference, nor normalisation as a goal.

2. Medical, and in particular surgical, interventions must have a clear ethical basis, supported by evidence of long term benefit.

3. Data must be recorded on intersex births, assignments of sex of rearing, and of surgical interventions.

4. Medical interventions should not be based on psychosocial adjustment or genital appearance.

5. Medical intervention should be deferred wherever possible until the patient is able to freely give full and informed consent; this is known as the “Gillick competence.”

6. Necessary medical intervention on minors should preserve the potential for different life paths and identities until the patient is old enough to consent.

7. The framework for medical intervention should not infantilise intersex, failing to recognise that we become adults, or that we have health needs as adults.

8. The framework for medical intervention must not pathologies intersex through the use of stigmatising language.

9. Medical protocols must mandate continual dialogue with intersex organisations.”

I also endorse their call for a review of terminations on the basis of intersex differences – as intersex status should not be used as the basis for an otherwise undesired termination (in the same way that, if pre-natal tests were to become available at a later date to determine homosexuality, bisexuality or transgender status, I would ethically object to these tests being used as the basis for terminations).

Similarly, I support OII Australia’s call for a review of the use of off-label use of dexamethasone (and note with concern the possibility that this steroid could be used to prevent physical masculanisation and to “prevent homosexuality” – as highlighted on page 11 of the OII Australia submission).

I also have no qualms in supporting their Legal recommendations on page 21:

“We wish to live in a society where we are not obliged to conform to binary sex and gender expectations, where our biological distinctiveness is not treated as it it’s an errant behaviour, where we are protected despite our innate differences, and where intersex people are also not singled out or “othered” as a class. We wish to live in a society where our sex assignments are mutable, and not problematized, and where we (and others) can choose to remain silent on the matter of our sex, through an “unspecified” sex classification.

We seek recognition that our treatment by the medical profession and by the state is a human rights issue. We seek explicit inclusion in human rights and anti-discrimination legislation on the basis of our biological distinctiveness, without our having to submit either to medical intervention, nor a requirement that we “genuinely” identify as one gender or another.”

Of course, it is pleasing to observe that at least some of these recommendations have been achieved since that submission was written, with the passage this week of the Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Bill 2013, as well as the recent release of the Australian Government Guidelines on the Recognition of Sex and Gender. But other work, especially with the medical profession, remains to be implemented.

Finally, I would like to strongly endorse the Community support recommendations of OII Australia on page 21 of their submission. The recent history of OII Australia demonstrates that it has had incredible success in firstly, drawing attention to some important, but hitherto largely ignored, human rights issues and secondly, to achieving some key victories (such as the recent passage of federal anti-discrimination protections, which was a world first at federal level).

The fact that it has done so as a small, member and volunteer-run organisation, with no government funding, is truly impressive. With many issues yet to be resolved, hopefully the Commonwealth can see fit to provide an ongoing funding source for OII Australia.