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.
