Sue Boyce (Queensland, Liberal Party) Share 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)