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Community Affairs References Committee
Involuntary or coerced sterilisation of people with disabilities in Australia
- Parl No.
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Community Affairs References Committee
CHAIR (Senator Siewert)
Boyce, Sen Sue
Moore, Sen Claire
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Content WindowCommunity Affairs References Committee - 28/03/2013 - Involuntary or coerced sterilisation of people with disabilities in Australia
ANSARA, Mr Y Gavriel, Health Policy Officer, National LGBTI Health Alliance
BRIFFA, Councillor Tony Muliett, Committee Member, Androgen Insensitivity Syndrome Support Group Australia
CARPENTER, Morgan, Secretary, Organisation Intersex International Australia
HART, Ms Bonnie, President, Androgen Insensitivity Syndrome Support Group Australia
PERRIN, Ms Sandra L, New South Wales Representative, Androgen Insensitivity Syndrome Support Group Australia
WILSON, Gina, President, Organisation Intersex International Australia
Committee met at 09:01.
CHAIR ( Senator Siewert ): I welcome representatives from Organisation Intersex International Australia, the National LGBTI Health Alliance and the Androgen Insensitivity Support Group. I understand information on parliamentary privilege and the protection of witnesses and evidence has been provided to everybody. I should also say that we are recommencing our inquiry into the involuntary or coerced sterilisation of people with disabilities in Australia. I welcome you today. Do you have anything to say about the capacity in which you appear?
Mr Ansara : My doctoral research in psychology includes medical decision-making about intersex people. I have done educational training for health professionals on this issue, and I have also provided support to people and families.
Gina Wilson : I am on the board of Organisation Intersex International and I am President of Organisation Intersex International Australia, the regional arm of OII.
CHAIR: Thank you. What I will do is throw to you for opening statements, and then we will ask you some questions. Over to you.
Morgan Carpenter : It has fallen to me to give the opening statement. This is kind of on behalf of OII, although I am a member of the AIS Support Group as well. OII Australia is a not-for-profit human rights and peer support body by and for intersex people. We employ no staff and receive no public funding. We thank the Senate and the government for their attention to the sterilisation and sexual health issues of intersex people, which are pressing concerns for us.
The World Health Organization describes disabilities as including an impairment or a problem in body function or structure, not just a health problem: 'It is a complex phenomenon, reflecting the interaction between features of a person's body and the features of a society in which he or she lives'. So intersex people are regarded by medicine as having an impairment—a disorder of sex development—which affects perceptions of our realness as men or women. Intersex bodies do not meet societal expectations. Cultural, familial and medical attitudes govern to which sex we are assigned. Surgical and other interventions are made to erase intersex difference.
Our submissions detail a structural inequality in the relationship between the medical and legal professions and intersex people. Regarding sterilisations carried out on the basis of inflated claims of cancer risk—and you have heard yourself, in this inquiry's December hearing—a rate of 30 per cent was quoted by Professor Grover of the Royal Children's Hospital in Melbourne, who stated that gonads are removed 'because they are non-functioning gonads or carry a significant malignancy risk'. That is a lose-lose scenario. Pleskacova and Crouch, researchers in the field, quote gonad cancer risk levels for people with complete androgen insensitivity syndrome, or AIS, at between 0.8 per cent and five per cent, and inpartial AIS at 15 per cent. The lifetime risk of breast cancer in women is 12.2 per cent, according to the US National Cancer Institute, and no doctor would remove a healthy infant's breast buds because of that level of risk. So, we see inflated assumptions about the cancer risk that lead to sterilisation of intersex infants.
Our submission also shows that clitorectomies, clitoral recession and other genital surgeries are carried out unnecessarily, without patient consent or regard for the full range of possible life paths. In non-intersex girls this is commonly decried as female genital mutilation. The Chief Justice of the Family Court referred to the welfare of child A in her submission. The judge in that case consented to the sterilisation of a 14¾-year-old boy, with his consent. As an infant with congenital adrenal hyperplasia he underwent irreversible genital reconstruction in the postnatal period 'to give her a feminine appearance'. The child's clitoris was deemed too big to fit her as a girl. There was no judicial comment then or now regarding that surgery. It is the standard protocol; it is unremarkable. But child A's change in sex of rearing in CAH—that medical variation—is not unusual. Eight to 20 per cent of intersex people have gender issues as adults. Hughes, in 2006, found rates of up to 40 per cent with some intersex variations.
Decisions made in infancy have a lifelong impact, and you can see that in the case of child A, whose clitoris-phallus was removed when he was an infant—and that was unremarkable. The impact of surgery can be seen in the high prevalence of lack of sensation, repeat surgeries, infertility, scarring, painful intercourse, depression and trauma. In a 2005 study by Warne of patients at the Royal Children's Hospital in Melbourne—patients treated according to the hospital's own protocols in their own hospital—the intersex cohort was similarly distressed as a comparison group of chronic somatically ill persons, that is, chronically bodily ill people. Schutzman in 2007 found that prevalence rates of self-harming behaviour and suicidal tendencies were comparable to those of traumatised women with a history of physical or sexual abuse. People who had sterilisations were significantly more distressed, with depression being particularly increased.
There are some recent developments. Intersex issues have begun to be addressed internationally, and a bit less so nationally. There are two quotations I would like to give that speak to the best interests of the child, which is an issue that I think the committee has looked into in some detail.
The Swiss National Advisory Commission on Biomedical Ethics apologised in November 2012 for past treatment and called for 'an end to surgery for psychosocial reasons', calling for criminal sanction. They say:
There is no guarantee that a decision which is good for the child in its current state will also be best for this person in puberty or adulthood.
The Commission recommends that the determination of the child's welfare should be based as far as possible both on the current interests of the child and on the anticipated interests of the future adult.
If … interventions are performed solely with a view to integration of the child into its family and social environment, then they run counter to the child's welfare.
Given the uncertainties and imponderables involved, a psychosocial indication cannot in itself justify irreversible genital sex assignment surgery in a child who lacks capacity.'
They recommend all (non-trivial) sex-assignment treatment decisions which have irreversible consequences that can be deferred should not be taken until the person to be treated can decide for him/herself. A new Victorian framework document which gives best practice in Australia was launched last month, but it fails to fully address those psychosocial rationales for surgery—they are still permitted. It talks about the debate rather than recommending their ceasing.
Advocates for Informed Choice, a US intersex rights organisation, gave testimony a few months ago to the UN Special Rapporteur on torture, and this month to the Inter-American Commission on Human Rights. They say:
'Doctors are also aware that there is usually no medical necessity for genital-normalising surgery, and offer social justifications, believing that the abuse they commit is necessary to prevent future discrimination against children with bodies that challenge the norm. However, just as it is a violation of the child's human rights to address parental discomfort through surgery on the child, it is a violation to address societal discomfort by the same means … The unavoidable pain of surgery and the high risk of severe, lifelong physical and mental suffering from loss of sexual sensation and function; pain caused by scarring, infertility, castration and violation of body integrity; and irreversible sex assignment to the wrong sex would never be accepted by doctors or parents if the child did not have an intersex body. The belief that such high a risk is acceptable with an intersex condition … drives these human rights violations. The fact that there is no medical justification for the ill-treatment means the good intentions cannot prevent the treatment from constituting torture.'
I table both AIC's testimony and the Swiss National Advisory Commission on Biomedical Ethics's document. Thank you.
The treatment of intersex people is a human rights issue. We are not asking to end all surgical intervention but we are asking for the end or delay of all surgery for psychosocial reasons—that is, societal- and appearance-related reasons—so that an adult or adolescent can freely consent. We add that surgery for cancer-related risks must be based on strong evidence specific to the diagnosis.
Councillor Briffa : The Androgen Insensitivity Syndrome Support Group has been around since 1985. It was started by an endocrinologist in Melbourne, Professor Garry Warne, who decided—and he was really ahead of his time—to bring people with intersex conditions together, including families. I was first involved in the support group in the late 1980s when I was a teenager—in fact, I was 19 in 1989—and it was an amazing experience being able to meet other people. I acknowledge and thank Professor Garry Warne for his work and for starting the support group.
The support group has come a long way; we now run ourselves. We are an incorporated association and have been for the last 13 or 14 years, with members all across Australia. Even though our name is the AIS Support Group—AIS being one of the intersex conditions—we do not represent or include just AIS. We kept the name because that is what Garry Warne called it back in the day, but we include a number of intersex conditions. I have AIS, Androgen Insensitivity Syndrome, but like autism and other conditions there is quite a spectrum in AIS. Both Sandra and Bonnie also have AIS and they have the complete form.
Importantly, our support group also includes parents, and I would like to bring out the parents' voices in this today. It is important that we hear from them about their experiences. Obviously, from my personal point of view, I have seen the impact that my variation, the way that I was born and the way that I was treated by the medical community has had on both my parents—particularly on my mother. We have many other members in the support group: family members, and mothers in particular. I would like to perhaps mention a few of their experiences today.
The terms of reference, I am very pleased to say, include intersex people. We thank you very much for that. In the intersex context, sterilisation is interesting because some doctors—perhaps many doctors—will say that sterilisation is not an issue because intersex people are sterile or are mainly sterile. That may be the case at the time, but to remove someone's gonads at one point in time, assuming that there will never be medical advances that will allow that person to reproduce, whether it is through IVF or something similar, is pretty myopic. We believe that the issue of sterilisation is relevant to us. It has a serious impact on us in terms of our sexual health, our relationships, being able to reproduce, and being different. One of the things that they say to us is that we need to have our gonads removed because we are different—'We want to make you look normal.' Of course, part of the whole sterilisation thing is that you have pretty big surgery and scars, so they are making you different!
I had my testes removed when I was seven, so I was raised as a girl. They decided that I could not have testes because I am a girl and they finally convinced my mother to approve me to be castrated. My mother was so convinced not to go through this—my mother is a devout Catholic; I am a fallen Catholic—and she decided that, if God made me like this, God can take it away—'This is the way God meant for her to be.' The doctors were not very happy with that response and booked me in for surgery when I was seven. Mum got to the hospital, changed her mind and took me back home. Would you believe—you would not get this sort of medical treatment anywhere for any other condition—the doctors turned up at my parents' place that night to convince my parents that the surgery should continue, that God had given them the knowledge to treat me and therefore they should continue with the surgery.
I have a few pages here from my medical records. This is the part in my medical records that I never actually spoke to my mother about. It says: 'Mother now ready for gonadectomy.' I would like to submit those pages. It had taken a number of years to be convinced, but finally my mother was 'ready', they said to the medical profession. I have a couple of copies of those.
Senator BOYCE: How old were you when your mother was 'ready'?
Councillor Briffa : I was seven. They knew what they were doing. They did a biopsy well beforehand. In fact, they did a biopsy when I was a couple of months old. They worked out there were testes. The histology reports, which I will also tender, show that they were healthy testes. But there was no Family Court approval. If we are talking about coercion, doctors coerce families, parents, into believing by saying: 'We need to remove these testes because it will make your child normal.' There is also the story: 'There is a risk of cancer.' The risk of cancer is not based on anything medical; it is just a figment of their imagination. That is what they use to convince people. The risks are not high enough to be convinced of routine removal of healthy gonads. Besides that, technology has come a long way. There are ways that they can continue to monitor and screen gonads for their effectiveness.
Thankfully, even though infertility was certainly a big issue for me, particularly as a woman in my twenties and adoption is so difficult, I am very grateful that, through the foster care system, amazingly I was able to foster a number of kids, but two of the kids in particular needed a permanent place to live and, at the age of 26, I fostered, in a permanent way, a seven-year-old and a five-year-old. They are my kids; they are my babies. I am very pleased about that. The other thing about sterilisation is that it means that women with AIS, for example, then have a reliance on hormone replacement therapy. If they do not have their testes removed, one of the beautiful, natural quirks of AIS is that you actually do not need HRT because the testosterone produced by the testes is converted into oestrogen. So you actually go through a natural feminising puberty which assists you in terms of body image and understanding who you are. Being treated like you are someone very, very different who needs intervention in so many different ways because of the repeated examinations, surgeries and hormone replacement therapy—none of that makes you feel normal.
I would just speak about my case again. I am a twin. I have a non-identical twin sister. She does not have AIS. So I have a perfect example of someone who is normal and someone who is nothing like normal. Following the castration surgery I had scars. Anything like swimming lessons or camping was out. It did not happen. I ended up going to one camp when I was in grade 6 only because the teacher, God bless him—he has actually passed away now; he was a lovely man—turned up to my home to convince mum. Mum had used the excuse that we could not go on the camp because she could not afford it. This lovely teacher, Robert Morton, turned up to our house to say, 'It's okay. Don't worry about the money. We'll work on that.' We did a fundraiser and washed cars over I do not know how many weeks. We raised the money and I ended up going to the camp. So I had one experience of a camp. But that these sorts of things make you normal is a fallacy.
Certainly there is shame and stigma attached to being intersex. Most people in our support group do not tell people that they are intersex. It is a big hidden in secret. We have members of our support group who have not even told their partners that they have an intersex condition. Getting information to them is almost impossible. For example, you would not send a newsletter to their address. They would have to catch up with a friend and get information that way because the shame and stigma is so intense that they cannot even tell their partner—'What would my partner think if they knew that I had testes or that I am 46,XY?'
I will talk about coercion now. Obviously I mentioned my experience and what happened, but I can tell you about another member of our support group who had a daughter with AIS. Like most people, she had never heard of AIS. She had never heard of an intersex condition. The child was born with grade 4 or grade 5 AIS and so was born looking ambiguous. The doctors were not sure if the child was a boy or a girl. But a decision was made pretty quickly that they would raise the child as a girl. The mother was still in hospital having given birth when doctors convinced her to agree to have the child castrated and have the testes removed. We are not talking about a long time ago either. We are talking about a matter of eight years ago in the state you represent, Senator. It is unbelievable. That person then contacted us. She was not given any information back then. The only information she was given at the time was, 'We can make this better. Let's do this now. The sooner we do this the better.' She was not given any information.
We have another member of the support group whose child was born coincidentally not only with AIS but with a cleft palate. I can tell you that when the child was born the parents were put in touch with the cleft palate support group but not with us. She was given literature about cleft palates and all the options available to her but nothing about her child's intersex condition.
There are also questions about who can consent. Can a parent consent? I think the High Court made its decision pretty clear in the Marion case about that. That is pretty much all I need to say about that. Regarding need for surgery, I think all decisions about surgery need to be based on evidence—is it medically required, or is there medical proof that there are these risks associated with this?—because in some cases there are. If you get the diagnosis wrong—and doctors should not get the diagnosis wrong—there are higher risks. We have had a member of the support group from Queensland whose daughter was misdiagnosed. She had gonadal dysgenesis, not AIS. The risk of cancer with gonadal dysgenesis is over 50 per cent. Her daughter was diagnosed with cancer at the age of 16 and died by the age of 18. Now, it is a blood test—a simple blood test can determine the difference between AIS and gonadal dysgenesis. In one, you have high testosterone levels; in the other, you have nothing. So, it is not rocket science—get the facts right and make decisions based on the facts. We certainly do not want a repeat of that. What I am saying, by using that example, is that I acknowledge that there are cases when medical intervention is necessary—not always; rarely perhaps—but that is why you need to make sure you have an accurate diagnosis. Sorry for getting a bit emotional there, but I spoke with the mother in that particular case a number of times, and it is not easy. But that is what we do as a support group.
You can imagine the impact this must have on parents. My parents, or the parents of that young girl, who was just born, were coerced by doctors. The mother was coerced into having her testes removed. That woman rang me a year or so later. And remember that these are genetic conditions, so in many of our cases we have families that have a number of members with AIS. Bonnie, for example, also has a sister with AIS. This particular member contacted me about a year after her daughter had her testes removed and told me she was thinking of having another child. I congratulated her; I thought that was fantastic news. She told me she was really worried about the child having AIS. I asked her why she would be worried, because AIS is not that big a deal. And she said, 'Oh, no, it's not because my child will have AIS that I'm worried, but how will I tell my first daughter if my second daughter has AIS that I did the surgeries on her but not her sister?' And I had no idea what to say to that; that is difficult. Those repercussions and the impact on relationships—the guilt that parents feel—are lifelong. I really want to be the voice of parents today as well.
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. And we have this inquiry, which also includes us. 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. And, who knows?—we might even have a marriage act that says that marriage is not only between a man and a woman; it is between people who love each other.
Senator MOORE: That might take longer.
Councillor Briffa : That might, but there is a bit of a challenge at the moment, which I will mention very briefly. At the moment I am being advised that I cannot marry at all, because I am not male or female, so there might be a challenge coming up about that in the future. Anyway, I will leave it at that, but I am very happy to take questions later.
Mr Ansara : The National LGBTI Health Alliance is the national peak organisation representing a range of organisations and individuals. OII and AISSGA are both member organisations of the Alliance. These are organisations and individuals that work together from all the way across Australia to promote improved health and wellbeing for lesbian, gay, bisexual, transgender and intersex people and other sexuality and gender diverse people, which would include someone like Tony, not only on the basis of being intersex but also not having a binary gender.
We support measures that contribute to improved health and wellbeing for LGBTI people. Our member organisations include the major providers of services for LGBTI people from across all Australian states and territories. We attempt to provide a national representative voice on LGBTI health policy issues and evidence-based decision making on sex, sexuality and gender, particularly in terms of data collection.
I have a very personal interest in this issue, which I will mention. But first I will introduce you to our general manager, Warren Talbot , who is here representing the Alliance as well.
CHAIR: I presume you are okay if photographs are taken.
Mr Ansara : Yes.
CHAIR: We just need to ask permission for photos to be taken.
Mr Ansara : Thank you. My interest in this is on the basis of personal experience, and I am currently completing doctoral research in psychology that includes two studies focused on this medical decision-making process about intersex people. I have interviewed people. I have had conversations with people. I have also provided support to families and individuals. So I am aware of how this is experienced by health professionals as well as how it is experienced by individuals and families.
Thank you for inviting us here today. A lot of points have been addressed so far. The New South Wales government's submission talks about legal and regulatory frameworks. It says, 'At common law only a court may authorise the planned sterilisation of a child who is not competent to give consent, not a parent or a carer'. Then it adds the clause, which I think is pivotal, which is 'unless the treatment is required for medical or therapeutic purposes'. One of our main points here today is that there are many procedures being done that never make it to the Family Court, as you have already heard mentioned, because they are classified as 'medical' and 'therapeutic'. Things that are done for purely psycho-social reasons that are not medically necessary are being done that would be considered genital mutilation and that would be considered criminal activity if the children were being classified—and also if the adults and the adolescents were being classified—as female. So you have almost got a kind of sex discrimination going on there. If you are classified as female, you are protected from these abuses; but, if you are classified as intersex, you are not.
One of the things that happens is that a lot of people who are intersex are born with bladder problems and require urethral reconstructions. It is extremely difficult to find any surgeon who will perform those urethral reconstructions who will not also try to coerce parents and the individuals themselves into having these normalising procedures. There was a case in Germany where an 18-year-old was persuaded to have surgery—they were coerced—and there was a legal judgement in favour of the former patient Christiane Volling. In other words, it is one of the first cases you hear about where there has been any sort of involvement whereby people are coerced into decisions that the medical providers had any sort of sanction against them.
The Victorian document—which, as soon as it was published, became the best practice standard of what is available in Australia—includes psycho-social reasons. Even though many parts of the document attempt to impose certain ethical standards, you see that currently many of the harmful procedures you have heard discussed and many more that I have heard people share with me would still be permitted under that document. So I could say, 'Well, based on your external genitals at birth, I think these gonads don't belong, so I'm going to remove them because psycho-socially I think that's in your best interest and I feel that is therapeutic; therefore, that won't go to the Family Court.' What is interesting is that when people, as you have already heard discussed, try to correct the damage that was done to them, whether those are adolescents or adults trying to do that, they then go through a whole procedure of people saying, 'You've got to make sure you know what you're doing.' They put them through screening. They have got to have psychiatric counselling in many cases. So there is a double standard.
What you see is that a lot of intersex people do not seek medical care even when emergency treatment is needed, because they are so afraid of further medical abuse. For myself, I had some medical treatments done to me nonconsensually that I, frankly, never talk about because it just is not safe, and there are many people who will avoid medical treatment on that basis.
I feel that the only way to protect intersex Australians from these sorts of involuntary and coerced medical treatments is through legislative reforms because, right now, parents are legally able to represent the best interests of children, but, as you have already heard, parents are confused; they are stressed out; they do not know. When a doctor tells them, 'Look, my medical opinion is that you've got to do this right away,' a lot of times they do not even give parents time to think about it. Those parents will do what they believe is in the best interest of the child based on medical advice. So, in some ways, it is not only about protecting young people, adolescents and adults; it is also about protecting parents from irreversible decisions that they will later regret.
The main point that I would like to make today on behalf of the Alliance is that, really, the only way is through legislative reforms. We have talked in our submission about what some of those should be. I would also mention that, currently, there are women in Australia who are using off-label Dexamethasone to prevent intersex births. It is, first of all, off-label usage, but I have an email from somebody who has checked with the PBS and given us a response—I believe from the medical regulatory division—and I have that with me. Basically, they said that, yes, a medical provider could prescribe that in Australia at the moment. Part of the problem with that is that it has been shown to cause cognitive impairment and intellectual disabilities once the child is born. It is also associated with some damage to the mother. The other point is that a lot of intersex people who do need to take hormones are being prescribed Androcur. For Androcur at the moment, the only item code you can get under PBS as an intersex person is one that refers to sexual deviance, which is a sex offender code. That is in people's medical records.
So you can see that there are many kinds of stigma. People have tried to address these problems in various ways, but this is lifelong. What I know from reading the medical literature, and I have talked to families as well and to people this has happened to—certain things happened to me as well—is that people almost always need follow-up surgeries. So not only is there scarring—and I heard people talk about how they felt more strange after the surgeries because they looked different—but there are also follow-up surgeries throughout adolescence, so a lot of times people are in and out of hospital when they should be making peer support alliances.
Councillor Briffa : And it is usually over the summer holidays, so your summers are spent in hospital.
Mr Ansara : It is creating a sickness when there was no sickness. I have talked to people who were not messed with who turned out perfectly fine and had partners, children and families. So what we are talking about really is allowing people to develop normally. These are the same sorts of arguments made about female genital mutilation: allow girls to grow up and develop without being mutilated and having their whole lives affected by this. The same thing is true for intersex people and we want the Australian government to recognise this and to provide legislative protection. Thank you.
Morgan Carpenter : I want to follow-up briefly on one point that Gavi just mentioned. I would also say that for some of us it is quite difficult to talk about our personal experience, so keeping it impersonal in some ways is a way of dealing with that. Gavi mentioned something about people growing up normally, and it is worth saying because it goes back to the sex discrimination amendment that was mentioned earlier by Tony. One in 500 or 600 female athletes has a detectable intersex condition. It is typically AIS, which is the variation that Sandra, Tony and Bonnie have. The information that I have says that one in every 421 female athletes over five Olympic games has a Y-chromosome. But as far as we are aware there are no Australian athletes in that category. Whatever is happening in Australia in terms of the medicalisation of people in childhood and adolescence is not enabling them to fulfil their full lives.
Councillor Briffa : I remember there being an instance in sports when I was a teenager. I was female, Antoinette, I went to an all-girls school and all that stuff. In interschool sports I broke the girls' record. Then they realised that I had also broken the boys' record. Mum was getting excited, thinking that I would get encouraged. It did not happen, because we knew that I would get classed as being intersexed; as being different. It really does affect our ability to participate in sport as well.
One other thing that I wanted to mention was the duplicity in the system. The case of Alex in Victoria, which involved a young transgender boy. They were born in a female body, identified as male and wanted to transition to male. In that case, that matter went to court. The child wanted to have surgery and everything. He was in the foster care system. One of his parents supported surgery. Because he had a normal female body, that had to go to court. The court decided that there was no way known that they were going to approve surgery. He was going to have to wait until he was 18 for any surgeries to occur and hormones could commence only once he was 16. That was so that he could give consent. The difference between that person and us is huge. It goes to show that we are treated like damaged goods.
Ms Perrin : I would like to mention something from my experience that relates to what Tony has talked about regarding the stigma. We have all mentioned it. Not only do doctors perform unnecessary surgeries but at times they outright lie to people. I was lied to about my condition. Admittedly, this was back in 1980, so I think that things have changed. But it was a common practice—it was considered acceptable—to create a fictitious story about what your condition was. I was told that I had ovaries that did not work properly when they were actually testes. As my mother says, she consented to removal of ovaries, not removal of testes. The consequence of that was that, because I did not have a name for my condition, I was not offered counselling or given any opportunity to contact other people with the same condition. That gives you an idea of the degree of fear around intersex and how much difficulty doctors and everybody else seems to have with accepting who we are and seeing us as normal.
Councillor Briffa : The main reason that it has changed is the internet. People can now get on the internet put in various key words and whatever and find the support group and find out what their condition is. I was lied to as well.
Ms Hart : I want to say thanks to everyone for presenting the information. It was pretty rare to have three peak national organisations in such agreement with one another about this particular situation. From my particular point of view, I have androgen insensitivity syndrome. Many members of my family both in my generation and in generations—including in my parent's generation—above me have had this. For the older generations, there was not really any surgical intervention. Consequently, my AIS aunties went through life with their gonads intact and had very productive and successful lives. They are retired and having a great time with it. In my generation, we had what effectively is sterilisation—the removal of our gonads. The overt pathologisation of intersex conditions effectively equals coercion in every way. My mother has complete regret for making those decisions. But they was assumed that they were using the best information at the time. Consequently, that medicalisation has meant that I have become dependent on future medical care. I have become a medical patient for life, pretty much. I require pharmaceutical HRT, I have early onset osteoporosis and a whole range of psychological issues resulting from those treatments, which I consider to be iatrogenic treatments.
The other thing that I want to bring up is that in the submissions from the different organisations we all call for more involvement of peer-based intersex organisations in support alongside medical treatment. We all think that that is in the best interests of everyone—the parents and the people. That will make sure that there is not just a top-down flow of information but that information also flows laterally throughout the community.
Wilson : I cannot overemphasise the difficulty with parent-child rifts. Sooner or later after these surgeries happen, the child will find out and the relationship between the parent and the child will have to be addressed. That quite often leads to a breakdown in that relationship for the rest of their lives. I would like to re-emphasise the problems around the medicalisation of children pre-birth and the attempts by the medical community to make children—and not just intersex children but any children—normal by the time that they are born. There is also the issue of future fertility. Protocols say that every effort should be made to preserve future fertility because we do not know what technologies will appear in the future, doctors still put normalisation before the preservation of future fertility. In every protocol that I have seen proposed, there is always an out clause.
The real issue is long-term follow-up. We fall off the edge of the universe at the age of 16. No doctor who has ever done any of these surgeries to render a child sterile has gone back to see how that child is living at the age of 40. They do not keep records in hospitals about where we live. They do not attempt to find out where we live. They do not have a cohort of people who they leave unaffected so that there is a control group. There is absolutely no long-term follow-up. So long as medicine is funded to do the things, they should be funded to do long-term follow-up to see how their interventions turn out.
That goes to intersex and ageing. There is almost no provision made for elderly intersex people. I can tell you that we hope that around about 90 per cent of intersex children get over the age of 60. There is no provision, or there is only just starting to be provision, in aged care. We do not know how people fare in old age. There is no provision of services for intersex people in old age. I am now a senior, so this concerns me quite a bit.
The other thing that we touched on is the thing that drives parents to agree to all this. We have not spoken about the homophobia of parents and the fear of the monstrous when their child is not perfect when they are born. Homophobia can be an issue when those differences are around the sex appearance of a child. Rather than address the homophobia or prejudices that a parent might bring to the birth of a child who has differences by talking to he parent, they address those fears by wielding the knife on the child so as, as far as is possible, to provide a parent with a normal child, which is what the parent was probably expecting. They do that rather than making a parent happy with what they have; rather than changing the parent's perceptions; rather than dealing with that initial period of anxiety that has arisen because things have not turned out. More than anything, what the intersex needs—and what all people affected by forced sterilisation need—is long-term provision of services and funding for support organisations. There is no intersex organisation in Australia, nor, probably, in the world—as far as I know—that receives substantial funding so that we can intervene and have a voice when these things happen. The child certainly does not have a voice. The parent is unaware of all these things. The medical professional brings their particular view, which is a normalising view, and there is no-one there to say, 'No, being intersex is okay. We're happy people; we can have a good life.'
Mr Ansara : I have two very quick points. When I was doing my research for my PhD I found some really horrific stuff. A lot of intersex people have discovered, as adults, naked photos of themselves in medical textbooks and journal articles that they never consented to. People have been part of studies to which they did not consent.
Also, one thing I noticed in the medical research is that it is skewed. So when they give you the percentages of how many kids had a certain sex at rearing and they agreed with that in later life, as Gina said, there is not enough follow up. In a lot of these cases, some people—not the original researchers—have gone back and found out that actually a lot of the people had committed suicide or were having a lot of difficulties. But, also, the researchers defined it in certain ways. So if they have decided that, for example, a person with CAH should identify as a girl then they do a study on girls with CAH, and boys or men with CAH are not included. That even includes support groups that are run by hospitals where they sometimes collect data. So you have this whole exclusion of services.
This is a huge concern, because even if you are trying to go to the evidence, the evidence is based on a kind of pathologising mentality and skewed data. Actually, this whole protocol is based on John Money's original idea, and the case of twins—this is a single case, not even a group of people being studied. The twin who had the botched circumcision, was raised as a girl. Recently, Milton Diamond and another researcher went back. Milton Diamond is in Hawaii and has done a lot of research in this area. He has done various follow-up papers on this. David Reimer, committed suicide. He identified as a boy and as a man and was coerced, not just into surgical interventions but into taking hormones so that he would appear more like a female. So this entire protocol is based on one single case that did not even work.
So there are huge problems with how this is being done, and that is just to focus on the reason that doing a standard of competence—Gillick competence or a similar standard—where you ask, 'Does the young person understand what is being done to them and are they capable of understanding the risks and benefits' is so important. People should be able to consent where they know what they want, particularly to prevent forcing someone going through a puberty. Just as Alex had the right. That did not go until 16 but there are people who have irreversible physical changes at puberty, so if Tony knew, 'Yes, I do want these removed,' and Tony was capable of saying that then that would be a different case. So it is very important that we focus on the consent of the individual.
It is mainly when the individual is not consenting that there is a need for somebody outside who is not the parent, who is not a family court, who is not a medical professional, to be making decisions.
Ms Hart : I would like to concur with some of those statements, just in terms of my personal experience. I was 11 when I had my gonadectomy. The whole procedure was explained to me. I thought I understood it. I said yes but I did not know what the ongoing circumstances of that would be. Later on, when I got my medical records back I did find photographs of myself with things inserted in me. To know that those photographs were taken in groups of people really, in my mind, constituted rape, because I was not aware—I was under anaesthetic—that those happened to me, when I was actually consenting of them. It creates ongoing pathologisation. I just wanted to give that personal perspective.
CHAIR: We will go to questions briefly, because we are going to run out of time, but your evidence has been very comprehensive. So do not think we are cutting short the questioning; you have been so comprehensive in your comments, now.
Senator BOYCE: I want to get clear in my mind the current medical practice for an intersex baby born today. What happens now? We have been using historical and contemporary, and I am just trying to work out what changes there have been and what the situation is now.
Ms Hart : One of the major changes is medical screening—many intersex children do not even get born these days. Many pregnancies are terminated in utero where an intersex diagnosis is given.
Gina Wilson : It depends on which state it is. Each state has a protocol. Victoria probably has the best protocol, but it still does not advise completely against normalising surgery until the child can consent. It still allows for the surgery of non-consenting children on the basis of normalisation. The Northern Territory and Western Australia send their children across to states that have a larger specialist hospital. Where there are specialist hospitals, normalisation surgery is still the rule. With androgen insensitivity syndrome it is still the rule that gonads are removed. With congenital adrenal hyperplasia it is still the rule to reduce the size of the clitoris and do vaginal surgery that will require later surgery. So the protocols that existed when surgery was first introduced in the late-sixties and seventies are still basically the protocols that prevail today.
Senator BOYCE: There is a comment in one of the submissions about the distinction between breast cancer rates and whatever—that you can easily monitor breast tissue but it is harder to monitor whether a gonad is becoming cancerous. Could one of you respond to that comment?
Gina Wilson : If that were the case, it would be difficult to monitor testicular cancer in men. They seem to be able to manage that fairly well. I do not see why they cannot monitor testicular cancer or ovarian cancer in intersex people. I think it is a red herring.
Councillor Briffa : What they usually do is monitor testosterone levels. We have got senior members of the support group who have not had any surgery. They are in their 70s and 80s, they have not had their testes removed and they are fine. They just have a blood test every so often to monitor their testosterone levels. We had one member of the support group in her 30s whose testes suddenly started reducing the level of testosterone that they were producing so she opted to have them removed. But at least it was consensual; she was an adult. There is no need to do it as a child. That is the other thing: all those cancer risks that they talk about, particularly with things like AIS, are post puberty. So you can wait until the person is an adult and can make decisions for themselves.
Ms Perrin : A patient of the well-known American doctor Charmian Quigley came out here to Australia as part of our support group conference. Dr Quigley's protocol was to leave the testes in, and this woman is doing very well. Apparently it is possible to monitor whether there are any changes to the testes.
Councillor Briffa : And Professor Sonia Grover, in Melbourne, now advocates to leave the testes in, in people with AIS as well, and just monitor them.
Morgan Carpenter : Her testimony to the committee said that gonads are either non-functioning or they are cancerous. At the hearing in December, that is what she said.
Councillor Briffa : Well, that is not what she has said to the support group in the past.
CHAIR: We will follow that up. We will write to her and ask for some follow-up.
Senator BOYCE: Some of you have spoken about the scarring being an issue that would be as serious as any other aspect. Could you explain a little about what sort of scarring we are talking about please?
Gina Wilson : That is internal hypoplasia. Typically, they do vaginal reconstruction. Scar tissue does not grow. They do the vaginal reconstruction on a child around the age of one or below. They have to do revisionary surgery before the age of five. When the child starts to have growth spurts at about 11 or 12, they have to do further revisionary surgery. That surgery has to continue until the child stops growing, which is around the age of 22 or with 23.
Senator BOYCE: So you might have up to five or six lots of surgery.
Gina Wilson : Yes; six or seven surgeries by the time you are 22. The other thing about scar tissue, if you have got any scars on you, is it is insensate. It has no nerves in it, so every time that the surgery is performed, it creates an area of insensitivity. No matter how many promises doctors give you that they are capable of preserving nerve bundles, every CAH child that has been subjected to surgery will say that they lack sensation in their genitals.
Professor Sarah Creighton in the UK did a survey of around 300 people who had been subjected to surgery who had congenital adrenal hypoplasia and found 100 per cent dissatisfaction. That is not complete rejection; that is going from being mildly unhappy to very, very unhappy with the surgery.
If you talked to people who had been the recipients of a heart transplant, you would be hard pressed to find people who said that they were unhappy with it. With intersex surgeries, you are actually hard pressed to find somebody who says that they are completely happy with what happened.
Senator BOYCE: I think it was you, Tony, who was talking about the homophobic and eugenic reasons underlying why this treatment continues. Would anyone like to talk about why they think the medical profession in particular but society in general continues to support gonadectomies in babies and children?
Councillor Briffa : I do not think society supports it in general, to be honest.
Senator BOYCE: Not in the sense that they understand it but: do you want to look normal?
Councillor Briffa : I will just go back to the previous question, because I want to give you an indication about the scarring issue but from androgen insensitivity syndrome perspective. To remove gonads in AIS results in two significant scars on your pubic area that look like—I call them angry eyebrows; that is what they look like. They are pretty obvious, especially in AIS, where you do not have pubic hair. For a child it means when you go camping, showering or swimming with other people, they cannot help noticing that you have two red scars in your pubic area. They are noticeable and you know what: they are noticeable for years.
Ms Hart : Mine are still noticeable, yes.
Morgan Carpenter : If I can just link the two questions: I have had genital surgery. I am sterilised. I also have scarring from a mastectomy, and that speaks to the issue that Senator Boyce was talking about in terms of being a guy with a mastectomy is as weird as a guy with breasts. It is seen as being flawed—are you a man or are you a woman? There are a whole range of issues: are you a real man? There are all these notions about what it is to be masculine and what it is to be feminine in the society we live in. All of these questions come up.
Councillor Briffa : But I would just to really make it clear that I was raised in the western suburbs of Melbourne as Antoinette Briffa, female. I went to the local girls Catholic school and all that sort of thing. I married a man. In my late 20s I found out about the background of my condition and experimented with living as a man, I guess. I had a male birth certificate and all that sort of stuff, and Anthony was my name at the time; that is what I changed it to. The community was okay. Now I am Tony; I am ambiguous; I am out there. I am an elected councillor with the City of Hobsons Bay. Last year I was the mayor. In the same area where I grew up and went to the local girls Catholic school, last year I was re-elected and had the highest primary vote of any councillor in the whole western suburbs of Melbourne. People are accepting of this once they know what it is about; it is just that people do not know about it.
I used to be the president of the local residents association. Coincidentally—actually, I had better not out them. Let us just say a local resident contacted me a couple of years later and said: 'Do you know what? I've never really understood that whole intersex thing, but my partner and I have just had a baby and she's got an intersex condition.' It is just a matter of educating people about intersex and breaking down that shame and that stigma. It is just raising awareness.
Senator BOYCE: But in some ways it sounds like disability 40 or 50 years ago.
Councillor Briffa : Very much.
CHAIR: Senator Moore has a question, and then I suspect there may be more questions for you to take on notice.
Senator MOORE: Did you want to add something, Mr Ansara?
Mr Ansara : I just wanted to add that, although I have not finished writing up my thesis, I will say that my research looked at something called framing effects in psychology. A simple way of explaining it is basically that if I frame information differently, whether that is visually or textually—if I give you a pain diagram that looks different, for example—you might make a totally different medical decision or have a totally different impression. I experimented with framing effects. I do not have the results yet to give you but, from what I have done in the analysis thus far, it was interesting. The medical community has this diagram, which is the most widely used diagram in paediatric endocrinology. It is called the Prader Stages image. What it does is that it simultaneously recognises that there are seven possible natural variations of infants' genitals externally. However—
Senator BOYCE: All in one diagram?
Mr Ansara : All in one diagram, yes. But what they do is that they schematically arrange it from least phallic to most phallic, and then what they do is that they have the extreme left as normal female and the extreme right as normal male, and the five in the middle are all just labelled as stages or disorders, and they have conditions. So, the closer you get to so-called Prader Stages V, the more invasive procedures they will still recommend to this day, in 2013. What I found interesting was that I brokeup those images and took away the medical text and the ordering. I had two different experiments, and out of both experiments I think there was only one person who even ordered the images in the same way. Nobody recommended medical procedures on as many people as the medical community does today. In other words, this is a medical norm; this is not in the general population. Yes, there are prejudices and forms of discrimination in the general population, but this is really coming out of the medical profession.
We also need to protect doctors from making these decisions, because I have friends who work in the medical community and I have done an endocrinology work shadowing, and I have seen how difficult it now is for medical people who do not agree with these procedures to conscientiously object. They cannot get through a surgical residency, which means that you cannot get a urethral reconstruction, which many of these young people need, without being altered. Clitoral excision—what do we call that? So the point is that this is really also about the framing of information—not only blatant coercion but framing information differently by showing you that image already with the order. I found that it was not even just the text. Even if what I am saying to you is the same, I am showing you this image. So it is the whole combination of communications that go on in these medical settings that really needs to change.
Senator MOORE: Very much on that line, Mr Ansara, I was thinking about the constant evidence from all of you about the role of the medical profession. I want to find out whether this is an international issue when these doctors get together—because you know doctors operate within an international norm when they give each other information—and whether we have to fight it internationally. Secondly, you went into a little bit more detail, Mr Ansara. Earlier in your evidence you talked about the standard urethral efforts that have to be done to make sure that things are working well for the children and the fact that that is often linked to ongoing surgery to change the testes, or any sexual organ, to make things work well. I take it that is standard practice. Does it need to be? If you are doing the basic surgery to ensure that the urethra operates, do you have to do the other stuff? There are three questions.
Councillor Briffa : They have this weird notion that, to be male, you need to be able to urinate standing up.
Mr Ansara : Yes, and there is something called confluence, which is where the urethra—
Senator MOORE: Where it comes together.
Mr Ansara : Yes. It is interesting because correcting confluence is seen as essential, but what is essential is urethral function—that you are able to urinate. I have lived in many different countries—I am originally from here—including countries where everybody has to stand up for urination because there are no flush toilets to sit down on. There is the notion that women sit down and men stand up. I have been in places where if you are a man and there is a place to sit, that is a luxury so you would sit, just to show your affluence. These things are variable.
I think OII and possibly AISSGA can also speak to this. I recently came back from London. When there was the universal periodic review of the UK, I contributed to a submission about this. In the UK—and Sarah Creighton has written about these procedures; Gina mentioned that research—there were protests outside of University College London because there was an international medical conference on genital cutting. People started complaining and saying it was a violation of UK law and it might have constituted genital mutilation. That is interesting because, right around the time that happened, the conference program on the website was taken down and the site was mysteriously unavailable. This was an international conference of paediatricians, endocrinologists and surgeons, and live surgery was being performed so they could learn how to do it. This was in London.
Morgan Carpenter : We are also tabling reports from both Switzerland and the Americas on what is happening there. There is an international perspective in what we would like to provide you with.
Ms Hart : It is also useful to mention that the actual term that is used in medical circles is 'disorder of sex development. That was coined internationally at an airport by a group of doctors. It was coined, in terms of purposes, to enable intersex people to have greater access to health insurance and health services in the US. That has been adopted internationally. That exemplifies the international line.
Morgan Carpenter : OII Australia takes a quite strong position against the use of the phrase 'disorder of sex development'. We see this as pathologising and stigmatising.
Councillor Briffa : So does the AISSGA.
Mr Ansara : So does the Alliance. In fact, I can say from my research that these are framing effects. When you call something a 'disorder' it automatically affects people. I experimented with this—whether you say people have many different kinds of bodies; there are natural variations. So there are different ways in which you can talk to people about this.
Another point is that there is a so-called consensus statement that is constantly being cited in this area. It was cited by the Victorian Department of Health document. A lot of people, like Sarah Creighton and others I am familiar with in the UK who work in this area, psychologists as well as medical professionals, were specifically excluded from this so-called consensus, as were intersex people and advocates. The reason so many people were excluded is that they knew they would not agree.
CHAIR: There was no consensus.
Mr Ansara : That is right. There is no international medical consensus.
Ms Hart : The community is united or very similar.
Morgan Carpenter : There is consensus here.
Mr Ansara : And internationally there is consensus. At one point I was involved with the international OII. There are people in the international OII from so many countries—people from Egypt, Uganda; everywhere. So there is agreement. People are agreeing and saying, 'People should have the right to consent.' I do not think that young people should be forced to go through a puberty that does not reflect who they are. Intersex young people should have access to hormone blockers if they want them. Balanced information needs to be presented. That is why we have spelt out on the final page of our submission, based on having done endocrinology work shadowings, having talked to professionals about what would be helpful, that when non-urgent-care decisions are made—that is, they are not medically necessary, whether they are being considered therapeutic under this pathologising standard or not—they should have information about and referrals to intersex-led support and education organisations. If most parents could speak with AISSGA or with OII Australia—the people who are here today—they might make very different decisions. If they could also have counselling that discusses how people can lead normal, healthy, successful lives and discussion about the available evidence about the complications. Frequently people hear: 'Oh no, you're going to get cancer and die. You've got to do this to help your child or they'll never grow up.' What they don't hear is: 'Here are the complications of the surgeries. There are studies that show that between four per cent and over 50 per cent of people reject sex-of-assignment rearings and then have to go on and get other procedures as adults. Once you've destroyed the tissue, as Gina was saying earlier about the multiple surgical reconstructions that are done, imagine that this person identifies as a man later on: the tissue that would have created a functional phalloplasty has been destroyed. As a result of that he is now in a position where he has to go through all kinds of procedures to prove that he is really a man in the same way that somebody who was assigned female would have to.
Morgan Carpenter : That is not a hypothetical situation; that is in one of the cases that Chief Justice mentioned in her submission.
Mr Ansara : That's right. That is actually happening in Australia today. That situation is a perfect example of the Family Court not being able to deal with it at the time, because this won't reach the Family Court. They're fairly quiet. That is why the alliance is also saying that we should mandate data collection and that there should be an expert tribunal of people—which would probably include some of the people in this room—who have an understanding of the community interest and individual people on an equal footing with medical professionals. You would be in a room and if you see a case of suspected abuse, with identifying details removed, you could go and investigate. I guarantee that if doctors knew that by performing these surgeries they could be subject to prosecution, as they would with any other kind of non-consensual medical treatment—for example, if this were being done to babies and young people labelled female—there would be a totally different ethos in the medical community. I think what we are asking is for you, Senators, to help us and to help doctors, parents and young people to be protected, because you are outside those structures. I feel like you are the only ones who can actually make this difference, and it has to be through legislative reforms People have tried for years to advocate with the medical community and a lot of people get nowhere. It is an urgent situation because this is happening to many young people.
CHAIR: Thank you. I'm going to have to wind this up, because we have gone over time. It is really, really valuable evidence. I take the point—no pressure! I think people would be quite shocked when they understand it is still happening. I think people think: 'No, it's not surgery.' But, as we have said, if surgery's not happening [inaudible] happens anymore.'
Councillor Briffa : That's right.
Morgan Carpenter : At the end of last month—in February—there was a new protocol issued by the Victorian health department that does still permit this psycho-social rationale.
CHAIR: Thank you. There are a number of documents that you have said you are going to table. Can you give them to the secretariat and we will go through the formal process of accepting them.
Senator MOORE: Chair, will we be getting that protocol?
Morgan Carpenter : I can send one to you. I have digital copies.
CHAIR: That would be great; it would be very useful. Thank you.
Evidence was then taken in camera—
Committee adjourned at 10:18