Rachel Siewert (WA, Australian Greens) Share this | Link to this | Hansard source

The Community Affairs References Committee last year completed its inquiry into involuntary or coerced sterilisation of intersex people in Australia. Senator Moore and Senator Boyce will also be speaking on this topic. We tabled the committee's report last year, but it was during a period when the Senate was not sitting and we did not get an opportunity to talk about the report in the chamber.

Representatives of Organisation Intersex International Australia are in the gallery. I would like to acknowledge Morgan and Tony, who both gave evidence to the inquiry. They have sent a very strong signal to the committee that they very much like the report and have expressed their appreciation to us about it. They noted what a significant milestone the report is. We wanted to take the opportunity to talk about the report and, as 7 April is World Health Day, we thought this was an appropriate time to do so.

As I said, the Senate reference to the committee was to look into the involuntary or coerced sterilisation of intersex people in Australia. It was also the second part of our inquiry into involuntary or coerced sterilisation of people with disability. This was the second reference made by the chamber to the committee on this issue and they asked us—I remind the chamber because it was a while ago—to inquire into 'the current practices and policies relating to the involuntary or coerced sterilisation of intersex people, including sexual health and reproductive issues and the impact on intersex people'.

We took much longer to complete this inquiry than we had originally anticipated because we identified and took evidence on some very significant issues. We made 15 recommendations that—and hopefully I speak for all of us on the Community Affairs References Committee—we will be pursuing implementation of, in the same way we pursue implementation of recommendations arising out of many other inquiries.

I will read a passage from the OII Australia submission about the experience of Michael Noble. For me, it captures some of the issues we have been talking about—how society forces decisions on people and parents that have extremely long-term implications. The submission, which contains some very important information, is available on the committee's website. The passage reads:

Around the age of 23, an endocrinologist discovered that my body had never produced enough testosterone for me to undergo a full puberty. He therefore suggested I commence testosterone therapy. Initially, I resisted the pressures placed on me to commence therapy. Yet, eventually, I crumbled under the constant onslaught of threats and horror stories of what my future would be like if I didn’t undergo therapy, which the doctors claimed would turn me into a ‘real man’. It was insinuated, even blatantly stated on occasions, that my life would be worthless; that I would be a freak; that I would never achieve my potential, and that I would never have any self-esteem (apparently the self-esteem I already had was invalid as it existed outside of the predefined paradigm of being a real man). So, eventually, from the age of 28, after about 6 years of constant threats and ‘counselling’ by my medical specialists, I began testosterone therapy. And I found it to be a horrifying experience.

Testosterone therapy generated profound and traumatic changes in me. I lost contact with who I was and thus my sense of self. I was mortified when I began to grow large amounts of hair, where hair had never been. My voice dropped. I developed a very strong libido, but found the feelings unwelcome. I lost contact with my heart and the ability to relate to people in a nonsexual manner … I just couldn’t function as a ‘normal’ male, and this caused me significant psychological and physical distress.

Worst of all, however, was that the therapy turned me into somebody I was not.

Hearing accounts like Michael's throughout the inquiry provided us with profound insights into the effects on intersex people of being pressured by medical professionals and society. It was really important that we heard those experiences so that we could get an understanding of just what it is like for people who have had such important life decisions forced on them.

As I said, we made 15 recommendations. First off, we needed to outline and define what 'intersex' is. 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. 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.

And I know—because I have spoken to both Tony and Morgan—that this is considered one of our key recommendations. It is also very consistent with the recommendations we made in the first part of our report, into involuntary and coerced sterilisation of people with disabilities. People will see a very similar theme that we have followed there—that is, we should not be making decisions for young people; they have a right to make their own decisions. It is important to minimise any intervention on infants, because currently society is forcing parents into making a decision now—which of course takes the decision out of the hands of that future adult.

We also make the point that the government should :

… 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.

That came across time and time again in the recommendations. I know my colleagues will pick up other elements of this report.

I would, as is tradition, like to take the opportunity to thank the secretariat, who put so much effort and detailed research into this report. We did a lot of research for this report. I usually do not pick out people for special mention, but I would like to mention Ian Holland, who did a superb job with this committee. He really went the extra mile to do the research; there was so little information that we had to seek some of the information overseas. I recommend that everyone have a read of this report. It really does start to address the issues that we need to be addressing.

Sue Boyce (Queensland, Liberal Party) Share this | Link to this | Hansard source

I am delighted to have the opportunity to join my colleagues from the Senate Community Affairs Legislation Committee Senators Moore and Siewert in speaking to this report tonight. I am also delighted that we have in the gallery Morgan Carpenter, the president of the Organisation Intersex International Australia, OII; and Tony Briffa, Vice President of OII and former president of the Androgen Insensitivity Syndrome Support Group Australia, which sounds like a mouthful but perhaps illustrates in some ways the medical model that has in the past been the way that intersex people have been seen in our community.

As Senator Siewert said, 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. The intersex community itself believed that drastic changes needed to happen in this area. So we moved on to conduct the second inquiry

I would like to support Senator Siewert's comments about the former secretary of the committee, Dr Ian Holland, who did a superb job—well beyond what might be considered reasonable—to make sure that both of these inquiries were based on very sound grounds and were very cogent. As Senator Siewert explained, intersex is a continuum of conditions. Some conditions are not even diagnosed until puberty, but in the main they are diagnosed in babies or early in life. These conditions lead to a different development of gender.

It has been the practice in the past for doctors to make a decision often, it would appear, based on fashion or what was easiest. There was a great spurt of intersex babies being turned into girls in the sixties. In the seventies, they were more likely to be treated as boys. I know Tony will not mind if I mention his story, which was that he was one of twins; he had a twin sister. His condition was incomplete testicular feminisation, which is now known as partial androgen insensitivity syndrome. Doctors decided that even though he was genetically male he would be better off being assigned as a female. They told his parents to call him Antoinette and leave it at that.

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.

We are very proud within the committee that this report is apparently the first in the world into the sterilisation of intersex people. Morgan had the opportunity recently to present to a side event at the UN Human Rights Council in Geneva just a couple of weeks ago in regard to our report, which I am pleased to say is at least garnering international interest even if we have not managed to speak as broadly as we should on the topic here.

As Senator Siewert said, 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. We recommended that all medical treatment should take place under guidelines that ensure that treatment is managed by multidisciplinary teams within a human rights network, that we should favour deferral of what is considered normalising treatment until the person could give fully informed consent and that we should seek to minimise surgical intervention on infants, particularly if it is primarily undertaken for psychosocial reasons.

The discomfort that we all experience—I think some more than others—around sexuality in general came up during both of the inquiries that we held. In terms of women with disability, there seemed to be a very strange attitude from many, many quarters towards menstruation and women with a disability. In the area of intersex, the issues were more around people trying to deal with genitalia that they considered to be outside the norm and doctors feeling that they were in the position to be the ones that ought to make the decision.

I am very pleased to say that my home state and that of Senator Moore, Queensland, has in the past 12 months come up with some very important changes to its education policy for intersex people. We have the case of some very forward-thinking parents and their nine-year-old daughter, Emma. Emma's parents supported her in refusing to use the disabled toilet at school, because she was not disabled. Emma, who was now nine, had decided at five that she wanted to identify as a girl, despite the fact that she had been born as Ronan. So their threat of a legal suit against the Queensland government forced the government into a policy which says that school staff will be provided with practical information to support the respectful treatment and inclusion of all students, including same-sex attracted, transgender or intersex students. It was decided that it was not appropriate to direct students to disabled toilets as an alternative. It is great to see a school system, at least, providing this sort of respect and understanding to intersex people. I encourage that everywhere. (Time expired)

Claire Moore (Queensland, Australian Labor Party, Shadow Minister for Women) Share this | Link to this | Hansard source

At the beginning of any inquiry, we put down why we started the inquiry and we say thank you to people who helped us. We heard from both Senator Siewert and Senator Boyce about the history of this inquiry. But, in saying who we want to thank, 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. We had our own views at the beginning of the experience but we learned so much about the history of the isolation, the labelling and the lack of identity given to people who are intersex.

We had difficulty finding definitions with the research—we always do. But the one that I like to quote is one that says:

Intersex is not a medical condition or a disorder or a disability or a pathology or a condition of any sort. Intersex is differences in the same way height, weight, hair, and so on are differences.

That is way too simple. In putting down a definition, it is not a condition or a disability; intersex relates to people.

Councillor Tony, as I was putting this together, your quotes kept jumping out at me. I want to start with the one that I think summed up the feeling we had when we worked together in this inquiry. During the evidence Councillor Tony Briffa said:

I feel, and the support group feels, that this is an amazing time for intersex. We see the human rights and antidiscrimination legislation referencing intersex at the moment, which is brilliant, as well as an acknowledgement that we exist and that it is a biological variation, which has been wonderful … My birth certificate, from the state of Victoria, does not classify me as male or female. I have certainly had a female birth certificate, I had a male birth certificate at one stage and I have a blank birth certificate now. But we are hoping that one day in the future our birth certificates will actually be able to reflect, for those who want it, the way nature made us. 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.

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.

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.

There was a considerable amount of research done and, again, I want to echo the comments made about the work that Dr Ian Holland did in this inquiry. I think what happened for all of us was that, once we started listening to the evidence, we became completely engaged in the history of what had gone on before, the current situation, the need for engagement and the need for understanding. 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.

We often talk in our inquiries about the importance of multidisciplinary teams. One of our recommendations looks at the need for expertise in the field of intersex. One of the sadnesses, of course, is there are way too few practitioners who have the range of skills and knowledge that are needed to work with people and families through the processes of working out what would be the best outcome for the young person—often identified at birth or in early childhood—and for their families.

Senator Boyce, I loved the story of the young woman in Queensland because that exemplified the process of a family working together with a young person who made their own decision about who they are with the full support of their family at an early age. The family then made sure that the rest of society accepted that and worked with them. It is a part of that hope that we heard from Councillor Briffa. We now have a situation where a state government which is not always known to be flexible in interacting with individuals has been able to work with the young woman and ensure that she is able to make your own choices and move through with that total feeling of support.

We have a way to go and there are a number of recommendations there about the need for professional skills and development. We were impressed by the work of the people at the Royal Children's Hospital in Melbourne, who seem to have the most highly defined knowledge around this area. They worked effectively and, most importantly, worked with people from OII to ensure that there was this range of knowledge. We always get focused on documentation in this committee. Again, people must be able to have documentation that reflects their own identity rather than being forced into something that is not them. The Sex Discrimination Act legislation that we passed in 2013 now clearly identifies the issues around human rights and respect for people who identify as intersex. For the first time we as a nation can be proud of that.

I hope that this report is read by people—and not just the international groups who might find it by searching on Google—for the amount of work that has been done on the history, the achievements and where we need to go next. I would hope that this report will provide an opening for people with an interest in this to learn even more. 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. They know who they are and they should be able to share that openly with all of us. Again, I particularly want to thank those people who gave of their lives to us for the purpose of this report. 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.