Cross-party speeches on intersex health in the Australian Senate

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In thirty historic minutes in the Commonwealth Parliament tonight, senators from each of the three main political parties spoke on intersex health issues to mark World Health Day 2014.

Senator Rachel Siewert (Greens, WA) spoke as Chair of the Community Affairs References Committee, which published the report “Involuntary or coerced sterilisation of intersex people in Australia” last October. Senator Sue Boyce (LNP, Queensland), spoke as chair of the Community Affairs Legislation Committee. They were joined by Senator Claire Moore (Labor, Queensland), now Manager of Opposition Business in the Senate, and previously a member of the Committee inquiry.

Momentous speeches

Morgan Carpenter (president of OII Australia) and Tony Briffa (vice president of both AISSGA and OII Australia) were both delighted to be in the gallery for the occasion. Morgan Carpenter said:

In three extraordinary and powerful speeches we heard clear recognition that the medical treatment of intersex people is a human rights issue, that intersex is not a disorder, and that intersex people must be heard. Our issues are clear when regarded as issues of body autonomy, human rights, and individual choice of expression. Alone these statements are momentous, but the Senators also told some of our personal stories, and paid tribute to members of intersex-led organisations, OII Australia and the AIS Support Group Australia.

The Committee report was ground-breaking, we believe it’s the first parliamentary inquiry anywhere into intersex health and sterilisation, and its recommendations are welcome. We are enormously excited by today’s cross-party speeches. We hope that they will promote a better understanding of our health and human rights concerns, and policy changes that will lead to better health outcomes.

Tony Briffa said:

This is a turning point in the way that intersex people in Australia are seen and treated. We have long fought for our voices to be heard, so to have the Australian Parliament acknowledge our existence and our issues – as discussed in detail in the Senate report – is vital. Today heralds a moment in our movement where our politicians were united in expressing great concern about the current paradigm. It’s not ok to pathologise us. We thank the Senators for today’s speeches, and we look forward to the implementation of the Senate Report Recommendations.

Senator Siewert: “This is a human rights issue”

In her speech (proof version), Senator Siewert commented on the disordering of intersex, and the nature of intersex differences:

I think most people in the community do not understand ‘intersex’ and do not understand the issues. People in the past have seen it as a disorder—in fact, I think it is fair to say that many still do. So one of our recommendations is that terms such as ‘disorder’ should not be used. We strongly recommend that government and other organisations use the term ‘intersex’, and do not use the term ‘disorders of sexual development’, because intersex people should not be seen to have a disorder.

We also point out that there is no single condition that is intersex; there are in fact 30 or 40 testable genetic, anatomical and hormonal types of sex difference. We need to make sure that that is clear. Most importantly, we need to understand that this is a human rights issue.

We are particularly pleased that Senator Siewert gave voice to the concerns of Michael Noble, an intersex member of OII Australia who was diagnosed with an intersex variation as an adult. Diagnosis and initial treatment are not issues just of infancy and early childhood.

Senator Boyce: “Nothing about us without us”

Senator Sue Boyce commented (proof version of text) on the origins of the inquiry, and intersectionalities, how it grew out of an inquiry into the involuntary or coerced sterilisation of people with disabilities – with many similar issues encountered:

…this inquiry grew out of an earlier inquiry we had started into the topic of involuntary and coerced sterilisation of people with disabilities. It was initially thought that we could handle the inquiry into the sterilisation of intersex people within the same inquiry. Some of the issues are the same. Within the disability community there is a slogan that says, ‘Nothing about us without us,’ and that is something that the intersex community would like to see applied to them as well. The issues that were similar were issues where some in the medical profession thought they knew better than anyone else; they would make decisions not only on behalf of individuals but on behalf of families as to what gender might be assigned to a baby or to a young child when this was not immediately obvious. The other area that was similar to the issue of sterilisation of women with disabilities was the fact that parents’ wishes would often be seen as superior to and more important than the wishes of the individuals themselves.

What differed was the fact that the people with disabilities that we were talking about in many cases were seen as unable to give informed consent because of cognitive impairment. In the case of intersex people, the main issue was that this was being done when they were too young to give consent…

I do not know how anyone here can begin to imagine what a life lived as someone that you are not must be like. It is just very difficult to imagine. But it is a situation that affects at least 5,000 Australians currently and could affect many more that we perhaps are unaware of, because there is still a taboo in many areas of talking about intersex people and the issues that they experience: the amount of medicalisation of the condition, the fact that children are often left in the situation where they are spending a lot of the time visiting specialists, people being treated as something of a freak or a sideshow, and people having medical interventions and commonly experiencing operation after operation. It is a terrible situation.

Senator Boyce also commented on the case of a trans child, Emma, who was supported at her school in Queensland by the State government. The case illustrates the ability of the education system, parents and clinicians to develop respectful processes.

Senator Moore: stigma, respect, and ignorance

Senator Claire Moore commented on Tony’s sex classifications on birth certificates, initially female, then male, currently a chosen blank sex classification. Tony had said, “If people feel female that is great, and if they feel male that is great, but there are also people like me: I just accept the way nature made me. I am happy for my birth certificate to say that I am both male and female. One day, hopefully, we will have that as well.”

Senator Moore commented (proof version of text):

That statement was the joy that we felt in learning that people through their hard work and commitment and professional skills have been able to change the way our community looks at intersex. We saw in the past there was cruelty and labelling. The worst possible form we ever heard was the complete focus on the term ‘normalisation’. We heard that term consistently both in this inquiry and in the one on people with disability. What we need to do is take away the fear, take away the uncertainty and ensure that we listen to people who understand what they need. That has not come easily.

Senator Moore also commented on the issues of stigma, respect, and ignorance:

We heard consistently about the issues of medicalisation. When looking at the history of intersex, we consistently see that it has been defined in a medical way. As Senator Boyce put it, the political focus has meant that people are ignored to a large extent and are looked upon as ‘case load’, as things that have treatment rather than people with feelings and human rights. In our recommendations we have consistently said that the issues around intersex in our country should be seen as human rights issues so that people have support, recognition and respect…

We also learned about the need for engagement of peer groups and support groups because there is a need for personal support for themselves, for their families and for their friends. The role of peer groups became particularly important. Another quote from Councillor Briffa referred to a situation where a young child was born both intersex and with a cleft palate. The parents in that family were given significant support and interaction about cleft palates but were left completely ignorant of the sensitivities and the importance of issues around intersex. I thought that exemplified to a great extent the failures in our current system.

Senators on report recommendations

Each senator commented on the recommendations of the report. Senator Siewert made reference to recommendation 3, stating that the treatment of people with intersex variations “is a human rights issue”:

That is why the committee has made the following recommendations:

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.

Senator Sue Boyce commented:

I think that probably the most important of our recommendations — of which there were 15 — was that all proposed intersex medical interventions for children and adults without the capacity to consent should not happen without authorisation from a civil and administrative tribunal or the Family Court. We recommended that certainly nothing should happen to a child with intersex attributes until they were old enough to be involved in making a decision themselves…

Senator Claire Moore commented:

The OII was very focused on family counselling rather than surgical options, and I think that summed up a lot of the discussion we had on the medical process. There are guidelines for the way that should happen and, again, the OII sum up a lot of the issues that we talked about. Medical intervention should not assume crisis in our difference nor normalisation as a goal. Surgical intervention must have a clear ethical basis supported by evidence of long-term benefit. We must have data that is effective and recorded on intersex births and we must see that necessary medical intervention on minors should preserve the potential for different life paths and identities until the patient is old enough to consent. Medical intervention must not pathologise intersex through the use of stigmatising language.

The issue of stigma came up constantly and it flows on from ignorance and fear. People should not be stigmatised because of who they are. In fact, the clear message from our report is that people should be valued and respected… We have a responsibility, as I have said many times in this parliament, to respond to the recommendations and make sure that this was a worthwhile exercise.

Acknowledgements

Finally, Senators Siewert and Boyce kindly made reference to the presence of Morgan and Tony in the public gallery. Senator Moore stated:

we should also acknowledge that one of the major reasons this inquiry happened was the Organisation of Intersex International, OII. Thank you so much for sharing with us and for giving us the knowledge and the strength to walk with you through this inquiry, because it would not have happened without you and we would not have learnt what I think all of us together in this inquiry did.

OII Australia would like to thank the Senators, Dr Ian Holland and rest of the Community Affairs Committee secretariat, and the other members of our organisations, and the National LGBTI Health Alliance, for their hard work and commitment. To Senators Rachel Siewert, Sue Boyce and Claire Moore we extend our deepest and heartfelt thanks.

(Please note that the public gallery was actually closed for the evening, which is why only two of us were there.)

Senate Committee report on the involuntary or coerced sterilisation of intersex people in Australia

Updates

More information

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Report recommendations

The recommendations of the inquiry:

Recommendation 1
The committee recommends that governments and other organisations use the term ‘intersex’ and not use the term ‘disorders of sexual development’.

Recommendation 2
The committee recommends that health professionals and health organisations review their use of the term ‘disorders of sexual development’, seeking to confine it to appropriate clinical contexts, and should use the terms ‘intersex’ or ‘differences of sexual development’ where it is intended to encompass genetic or phenotypic variations that do not necessarily require medical intervention in order to prevent harm to physical health.

Recommendation 3
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.

Recommendation 4
The committee recommends that the Commonwealth government provide funding to ensure that multidisciplinary teams are established for intersex medical care that have dedicated coordination, record-keeping and research support capacity, and comprehensive membership from the various medical and non-medical specialisms. All intersex people should have access to a multidisciplinary team.

Recommendation 5
In light of the complex and contentious nature of the medical treatment of intersex people who are unable to make decisions for their own treatment, the committee recommends that oversight of these decisions is required.

Recommendation 6
The committee recommends that all proposed intersex medical interventions for children and adults without the capacity to consent require authorisation from a civil and administrative tribunal or the Family Court.

Recommendation 7
The committee recommends that the Standing Committee on Law and Justice consider the most expedient way to give all civil and administrative tribunals in all States and Territories concurrent jurisdiction with the Family Court to determine authorisation for intersex medical interventions proposed for a child.

Recommendation 8
The committee recommends that civil and administrative tribunals be adequately funded and resourced to consider every intersex medical intervention proposed for a child.

Recommendation 9
The committee recommends that the special medical procedures advisory committee draft guidelines for the treatment of common intersex conditions based on medical management, ethical, human rights and legal principles. These guidelines should be reviewed on an annual basis.

Recommendation 10
The committee recommends that complex intersex medical interventions be referred to the special medical procedures advisory committee for consideration and report to whichever body is considering the case.

Recommendation 11
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
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.

Recommendation 13
The committee recommends that the Commonwealth Government support the establishment of an intersex patient registry and directly fund research that includes a long-term prospective study of clinical outcomes for intersex patients.

Recommendation 14
The committee recommends that the Commonwealth government investigate the appropriate regulation of the use of dexamethasone for prenatal treatment of CAH.

Recommendation 15
The committee recommends that, effective immediately, the administration of dexamethasone for prenatal treatment of CAH only take place as part of research projects that have ethics approval and patient follow-up protocols.

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