Growth Attenuation
24/02/2016
The Hon. K.L. VINCENT: I seek leave to move my motion in amended form.
Leave granted.
The Hon. K.L. VINCENT: I move:
That this council—
- Notes the recent New Zealand case of Charley Hooper, the now 10 -year-old girl whose parents had her undergo growth attenuation treatment , meaning that she will now never grow over 130 centimetres tall, as well as a hysterectomy and ovary removal at the age of seven due to her disability;
- Notes that this case is not unique; in fact Hooper’s parents drew inspiration from the 2004 case of a child with disability in Seattle, known only as ‘Ashley X’, who was subjected to the same treatment;
- Notes that the use of growth attenuation and sterilisation as a response to disability is in fact known colloquially as The Ashley Treatment;
- Condemns the use of medical treatment on the ground of disability without the consent of the person on whom the procedure is to be performed, or significant evidence that the procedure is necessary as all other options, including additional supports, have been exhausted;
- Calls on the South Australian government to ensure that children and adults with disability in South Australia are legally protected from forced medical treatment (or the denial of medical treatment) without consent or consent by guardians who have a clear conflict of interest;
- Calls on the commonwealth government to ensure nationally consistent protections around growth attenuation and sterilisation of children with disabilities; and
- Calls for a total ban on such treatments for which there is no medical indication.
I thank several of my parliamentary colleagues for their team effort in seconding the motion.
In 1997, in Seattle, Washington, a child—now a young woman, who has only ever been known to the media as Ashley X—was born with a significant level of developmental disability. According to statements from Ashley’s parents that I have read on the internet, they presume that Ashley’s level of cognitive function is somewhere around that of the average infant.
I understand that Ashley X’s disability means that she is reliant on her parents and grandmothers to carry out everyday tasks, like helping Ashley get out of bed, bathe, dress and so on. These factors prompted Ashley’s parents to think about what might be the best way to ensure that Ashley could be properly supported far into her future, and they came up with what I think we can say is a pretty unorthodox solution, to say the least.
In 2004, when she was only six years old, Ashley X, at the request of her parents, underwent a full hysterectomy, a procedure which the hospital later admitted was performed unlawfully because it was done without a court order. At some point, she also had her breast buds removed to ensure that she would forever remain flat chested, and her appendix was also removed.
In 2006 or 2007, Ashley X underwent and completed oestrogen therapy, also known as growth attenuation. The purpose of growth attenuation is to close the growth plates in the body so that a person stops growing much sooner than they would have without this intervention. A year or so after the treatment, Ashley X had reached what would now be her full adult height: 135 centimetres, or four foot five, weighing just 29 kilograms, or 63 pounds.
It is clear from their statements in the media, as well as their own blog (which they set up in 2007 to respond to criticism of Ashley’s treatment and then somewhat even promote the treatment as a potential solution for children and young people whose conditions are similar to Ashley’s), that Ashley’s parents believe the treatment has been a success and that it was the right decision to make.
On this blog, pillowangel.org, there is a rather complex and convoluted PowerPoint slide demonstrating which treatments were undertaken and the perceived benefits derived from those treatments that Ashley X underwent. It states that Ashley’s small size will make it easier to care for her, to lift her, carry her around and turn her in bed, preventing such issues as bed sores.
Her parents state that the aim of removing Ashley’s uterus was to prevent her from experiencing the discomfort and inconvenience of menstruation, as well as eliminating the possibility of pregnancy and even uterine cancer. They also state that this will minimise the risk of Ashley X being sexually abused. Ashley also, as I said, had her appendix removed, the perceived benefit of which being the elimination of the estimated 5 per cent chance of her developing appendicitis.
The name of the blog on which Ashley X’s parents discuss the treatment is pillowangel.org, pillow angel being a nickname they have given to Ashley and other children with similar disabilities to hers. This name was inspired by the fact that these children and young people are often seen propped up on a pillow to support their bodies and their heads.
You can read more about Ashley and her treatment and her family on that blog, but for now let us analyse just a bit of what we have already heard. Firstly, I note that the PowerPoint slide, which talks about the treatments that Ashley X underwent, talks about the ‘removal of tiny uterus’ and says that alternatives were explored but were found not to be nearly as effective. I also notice that the removal of Ashley’s breast buds were discussed in terms of removing glands that were only ‘almond sized’ and would ‘enlarge at puberty’. So, removing them, it is suggested, would eliminate the discomfort of large breasts, particularly while Ashley is lying down, which I understand she does often, or is in her support harness.
The slide show also states that the removal of breast buds will eliminate the risk of fibrocystic growths and, perhaps most interestingly, ‘avoid sexualisation toward caregiver’. Let us analyse those words for a moment. It is obvious that a six-year-old’s underdeveloped uterus and breast buds will be small, so I must say I cannot help but feel that the use of the words ‘tiny’ and ‘almond-sized’ is a deliberate attempt to downplay the gravity of the operations, not very much unlike the way in which doctors used to describe what we now know as diabetes as ‘a touch of sugar’, or the way I have been telling people that I have just had a small, lumpy mole removed from my left leg in an attempt to distract myself from my fear that I may, in fact, have skin cancer (I am pleased to report that this is not the case).
Let us be clear: this is a grave decision. It is a grave decision because no surgery, no medical procedure, is completely free of risk. No matter how tiny the piece is, you are still removing—permanently—a piece of another human being’s body. Nothing I have read makes it clear to me that menstruation would have been any more uncomfortable for Ashley than for the average person; hence, I see no medical reason for this case.
Next, we come to the assertion that stopping Ashley from developing breasts will prevent sexualisation towards the caregiver. It is not 100 per cent clear to me from this statement whether it is meant that Ashley will exhibit sexual behaviour as a result of growing breasts or whether the person supporting her might subject her to sexual behaviour, on their part, because of her breasts. Either way, this assertion would be laughable if it were not so sad. I dearly wish, as I am sure that we all do, that it were true that people without fully developed organs, including sexual organs, were immune from being sexually abused. If this were the case perhaps we would not see names like Shannon McCoole in our newspapers on what feels like an almost daily basis.
If the suggestion that Ashley’s developing breasts would enable the person supporting her to sexually abuse her, this must also be dismissed as completely false. Yes, a woman’s breasts can be used in some sexual contact, but their primary function is biological: that is, to provide milk in the case of birth. Breasts do not cause sexual assault. Uteri do not cause sexual assault. The person committing sexual assault causes sexual assault. It is violence, and no matter who that violence is perpetrated against it is violence.
If a person is not able to understand that they are being sexually abused, because they have an intellectual disability or they are undereducated or they are intoxicated, for example, it is still abuse. If I were to steal money from someone’s bank account a few dollars at a time in such a way that they did not immediately realise it was happening, it is still robbery. As such, it is dangerous to talk about such factors perhaps in a way excusing abuse. Violence is violence, assault is assault, no matter in what context it occurs.
I am also yet to meet a young woman who genuinely became completely and insatiably sexually rampant the moment she became aware she had breasts and a uterus. In fact, it has been argued before and I will argue it again—and I will elaborate on this shortly—that sterilisation does not decrease the risk of abuse but may in fact increase it. That is for a few reasons. One (and these are in no particular order) is that in the event a woman is sexually abused there is no risk of pregnancy where she does not have a uterus, so potentially there is no marker that she has been abused if she is unable to communicate that this has happened.
Of course, in a case where a person is not able to readily communicate they have been abused, and they are not known to be in any form of consensual sexual relationship, then that person suddenly turning up pregnant would, I hope, create some cause for concern and for further investigation. Secondly, the removal of the uterus diminishes the need, or at least the perceived need, for education around biology and sexuality.
I am a big advocate for people with disabilities needing to be more readily provided with education about sexuality and biology and for that education being provided in a way that is accessible to them, depending on their experiences and their disability. We know anecdotally that large numbers of people with disability miss out on sex education and education about their bodies purely because they have a disability and it is assumed that they will not be able to understand this education or that they will not need it because of the way in which people with disabilities are often at a societal level infantilised, seen as asexual, or worse still, seen as undesirable and that no-one would ever or could ever enter into a relationship with us, because why would you? As I said, I hope to elaborate on that later.
I would also challenge the assertion that the small size of people like Ashley is the only way that they can properly be supported by making it easier to lift her and prevent bed sores. How does this logic explain the number of people, for example, who have acquired disabilities later in life, perhaps as the result of a car accident well into adulthood who still manage either independently or with some assistance from family, friends or paid support workers or the use of equipment such as wheelchairs and hoists to live very happy and healthy lives?
Next we come to the frankly bizarre measure which as far as I can see is in no way directly related to Ashley’s disability—that is, the removal of her appendix to take away the quoted 5 per cent chance of her developing appendicitis. I am no doctor, but I have done some preliminary research into this and from that I take that a 5 per cent chance of developing appendicitis is really the same risk as exists in the general population.
We all have, all of us in this room, a 5 per cent chance of developing it and, from what I have read, the only factor that is consistently agreed to increase the chance of developing appendicitis and associated conditions is age. The only factor known to increase risk of cancer of the appendix is age. In other words, in this case, there is no proof that the risk of appendicitis is increased by Ashley’s disability nor that the appendix was causing any medical problems which would normally necessitate its removal such as it was making her uncomfortable in some way.
I find it hard to believe that most doctors, hopefully any doctor, would perform this procedure on a child without disability where there was no medical proof that it was needed and that there are no other options. I see this removal of the appendix as moving into the area of not being about disability and supporting the person’s disability by using the person’s disability as a gateway to gain bodily control of that person.
That brings us briefly to the case of Charley Hooper, the case that is mentioned in the text of this motion. Charley Hooper is now aged about 10 years and she is a young woman from New Zealand. She is blind, as I understand from what I have read. She has cerebral palsy and she does not speak. Her story came to light in about 2014-15 when her parents spoke to the media about their decision to have Charley undergo growth attenuation—the stopping of the growth—and a hysterectomy after coming across information about Ashley X.
What is unique about Charley Hooper’s case, though, as opposed to Ashley X’s case, is a rather strange loophole that enabled her growth attenuation treatment to go ahead. I understand from what I have read that, once Charley Hooper’s parents decided that this was the best way to support Charley, they began looking for a doctor in New Zealand who would prescribe the oestrogen therapy, the growth attenuation procedure. They did not find one, and the relevant medical ethics board would not approve the treatment. However, what they would approve is a doctor in New Zealand maintaining the treatment through the provision of oestrogen patches if the initial treatment was provided elsewhere.
So Charley and her family were soon on a plane to South Korea where the initial oestrogen treatment was provided and upon returning to New Zealand, as I understand it, a doctor there provided oestrogen patches to maintain the growth attenuation treatment. Charley Hooper has now completed that treatment.
Her parents state that as a result of this oestrogen treatment for growth attenuation her seizures on, which were previously as I understand unexplained, have stopped. However, apart from that I must say that most of the perceived benefits I have read about are really as obscure as those given in the Ashley X case.
Her family states that they can now take Charley on holiday more easily as she can sit on one of her parent’s laps on the plane. They say it is easy to now walk with her down the mall as they can carry her, and take her to the beach. Anyone who knows me—and I guess that is at least everyone in this room—has probably seen me walking down the mall, has probably seen me at the beach in my full adult size in my wheelchair.
What concerns me is again this assumption that where disability comes in we stop asking the questions about what other measures might be possible to be used. We stop asking the questions about whether this is the right thing to do, and we enable these loopholes to occur where people like Charley slip through them. Even though no medical board would approve the treatment, she slipped through this bizarre loophole. If these loopholes can exist in New Zealand, just across the pond, I am not convinced that they cannot exist here—and I will elaborate on that in a moment.
In fairness to Charley Hooper’s family, particularly in fairness to her mother, Jen Hooper, she has discussed in the media considering the use of hoists and other measures to assist in lifting and supporting Charley if she were to grow to full adult height and weight. However, the conclusion that she reached was that given that Charley is assumed to have the cognitive functioning of a newborn that she might want the same things as a newborn. Newborns want to be held, they want to be cradled—you do not often see a newborn in a hoist to get them in and out of bed.
However, if this is true, if we are really thinking about what a newborn wants, I think we also have to ask ourselves if a newborn would want to be subjected to some pretty invasive medical procedures that will impact their life from that day on and for the rest of their life. Is that really what we want to put a newborn through?
I want to pause to make a few things clear at this point, the first being that I am not against and Dignity for Disability is not against these procedures where there is a clear medical need for them separate to the disability. That is indeed why the motion that is before us talks about a total ban on such treatments for which there is no medical indication. I have drawn the words ‘no medical indication’ from advice from the Australia Medical Association (AMA) SA Branch. I have met with them about this motion.
I have to say those representatives I met with were quite shocked that any doctor, no matter where they are—Seattle, New Zealand or Australia—would consider these things unless there was a clear medical indication that is separate to the disability. Of course, if a person with a disability has cancer, appendicitis, uterine cancer and so on and so forth and there are medical procedures that need to be undertaken to improve the health and the longevity of life and save a person’s life, I am not against that. However, what I am against and very strongly against, and what I believe we should be against in this chamber and in this parliament today, is the denial of bodily autonomy and integrity of people with disabilities simply on the grounds of our disabilities.
I also want to make it clear that I am not here to demonise particular individuals and the decisions they have made. As I said, it is very clear from the statements that have been made by the parents of people like Charley Hooper and Ashley X that they believe that this was the best decision in the best interests of their family and their child, but what I do question and challenge, and what I think we should all challenge here today and far beyond, is the social context which in some ways must inform these decisions.
This social context was again brought to my mind by another case that I read about a month or so ago in the media. I regularly keep up with disability rights news. I came across this story which is again from New Zealand. I am not sure what is happening in New Zealand at the moment, but this was another case in New Zealand where a young woman with an intellectual disability had her family apply to a court to have her sterilised, despite the fact that this woman is an accomplished athlete which, I guess, indicates that she is able to contribute and make decisions about her career path, her hobbies, her life and what she wants to do. She is clearly able to make those decisions.
But what was most chilling about this case is that the court found that this young woman was already taking a contraceptive pill regularly and responsibly. She was already taking measures to control her contraception and her fertility. She was already taking measures that most other people would consider adequate on their own. I know of no person without a disability who has had their mother or father apply to the court because they did not think that taking the pill was measure enough to prevent against pregnancy.
Again, we saw the quotes in this article from this person’s parents saying, ‘Well, what are we supposed to do if this young woman does get pregnant? We are getting older. We are not going to take care of her baby.’ This, again, shows how clearly these decisions are focused on the perceived incapacity of people with disabilities to make decisions about our own bodies and our own lives and to provide us with the tools to make those decisions rather than taking away those choices before we have had the chance to develop these skills.
This is something that I have talked about a lot and I want to talk about it again. We still, as a society, are focused far too much on the perceived or presumed incapacity of people with disabilities in a way that we would not presume incapacity of a person without disability, and this happens in everything from education—I mean strict academic education—to education about our bodies and education about sex and relationships and our social opportunities. We are still, at a societal level, so focused on the presumed incapacity of people with disabilities that that fear and that assumption controls the lives of people with disabilities unnecessarily.
My one-year-old nephew, Jordy, has not yet learnt everything that I hope he will learn throughout his life to keep himself safe, to achieve the life he wants to lead, to make friends, and all those things, but I have not said, ‘Well, I gave you a year and you have shown no ability to learn these things yet. You’re not tying your shoes yet. You’re not making your own friends yet. You’re not cooking your own meals yet, so let’s assume that you will never be able to do those things.’ Yet so often we make assumptions about people with disabilities that we have not yet learned to cook our own meals, dress ourselves, make decisions about our bodies, and learn about our bodies in relationships and sexuality, and therefore we will never be able to.
There are some quotes from a report which further talks about some of the reasons that sterilisation is often seen as an option for people with disabilities in modern-day Australia, and I want to talk about some of those. This is a report from Women with Disabilities Australia, the peak body representing—as you would have guessed—women with disability in Australia, which was done in 2013. It is called Dehumanised, and it talks about the experience of sterilisation of women and girls with disabilities in Australia.
Let’s keep in mind too that this report was done, I repeat, in 2013, so as much as we like to think that the issue of sterilisation or forced and coerced sterilisation was dealt with around the eighties, the fact that we are still discussing this and still reporting this in modern-day Australia shows this not to be the case. I want to read a bit from this report and go through some of the reasons why sterilisation of women and girls with disabilities is often seen as the default option and why those reasons need to be refuted. The first reason talks about what is called in this report ‘the good of the state, community or family’, and the quote reads thus:
Arguments here centre on the ‘burden’ that disabled women and girls and their potentially disabled children place on the resources and services funded by the state and provided through the community. A related and very commonly used argument, is the added ‘burden of care’ that menstrual and contraceptive management places on families and carers.
In a recent case, the Family Court of Australia authorised the sterilisation of an 11 year old girl with Rett Syndrome. The application was made by the young girl’s mother to prevent menstruation. No independent children’s lawyer was appointed to advocate for the girl, as the judge determined it would be of ‘no benefit’. In accepting ‘without hesitation ‘ the evidence of Dr T, an Obstetrician and Gynaecologist, the judge said:
‘Undoubtedly and certainly of significant relevance is that there are hygiene issues which must fall to the responsibility of her mother because Angela cannot provide for herself…the operation would certainly be a social improvement for Angela’ s mother which in itself must improve the quality of Angela’ s life.’
The report then goes on to state:
The ‘burden’ of parents having to deal with menstrual management of their disabled daughters is often used as a valid justification when Australian Courts authorise the sterilisation of disabled females—even before the onset of puberty. For example, in authorising the sterilisation of a 12 year old girl in 2004, the Court accepted medical ‘evidence’ that caring for her was an ‘ onerous responsibility ‘ on her parents and that sterilisation would make the task of caring for her ‘ somewhat less onerous ‘, including that it would ‘ make it easier for her carers if they had one less medication to administer.’
In the case of Re Katie,118 the Court authorised the 15 year olds sterilisation at the onset of her menstruation, on the grounds that there would be ‘appreciable easing of the burden’ on the parents as primary carers.
A quote from the judge went on to say:
‘It will lessen the physical burdens for the mother, in particular by decreasing the number of changes necessary in toileting, and quite possibly lessening the physical reactions, such as stiffening in body tone, which make Katie more difficult to handle during menstruation. It would lessen, for the parents, the risks of infection…Katie’s emotional welfare is best served by her continuing to reside in the family and by the demands of her presence being lessened as much as possible, to maximise the ability of the family, in particular the mother, to cope with Katie’s needs. Thus the interests of Katie are inextricably linked with the ability of her parents to cope with the burdens of Katie’s care.’
In late 2011, the Queensland Civil and Administrative Tribunal (QCAT) authorised the sterilisation of ‘HGL’, a ‘severely intellectually disabled’ 18 year old girl whose menstrual periods had commenced at the age of 17, which according to her parents, caused her ‘distress’. Although it was agreed that ‘ the current hormone treatment is managing HGL ‘ S menstruation ‘ , a hysterectomy was authorised because:
‘ there are risks that the medication will over time fail to achieve this effect and…HGL ‘ s current impairments mean that she will not be a candidate for surgery indefinitely. ‘
Again, even in Australia, in cases where menstrual management medication is being used and is being proved to be effective, we still see this vying for further control over the bodily autonomy of a person with a disability. The report goes on to state a further case, the case of Re S:
…a 12 year old ‘severely intellectually disabled girl’ who lived in an institution and who had not yet begun to menstruate , the Family Court granted authorisation for her [sterilisation] because , according to the specialist paediatric surgeon [who agreed] to carry out the operation:
‘it would be wiser to avoid problems rather than to wait and see if S copes with menstruation…surely there is no need for her to suffer the problems that may arise with…menstruation’ , which included ‘the possibility that she would develop a phobia of blood’ . The judge agreed this was a ‘realistic and appropriate view’ and that ‘there is no point in the child going through the problems associated with menstruation if she is not ever to bear children’.
In another case, the case of Re M:
… the Family Court authorised the sterilisation of a 15 year old girl prior to the onset of menstruation upon the basis that such treatment was ‘necessary to prevent serious damage to the child’s health.’ The rationale for this decision included that: the young girl’s mother and sister experienced ‘painful periods’ and ‘there is a very real risk that the same will happen to M’ …the young girl… played with herself’ and this ‘behaviour’, coupled with menstruation, ‘could cause infections’ . Additional reasons for the decision to sterilise M included that she was: ‘aggressive’; ‘strong-willed’; ‘stubborn’ ; had a ‘poor frustration tolerance’ , was ‘unco-operative’ ; was ‘a loner’ and had ‘few friends’ .
In yet another case of a young disabled girl aged 15 years who had yet to commence menstruation, sterilisation was authorised by the Family Court in support of her mother’s submission that menstruation ‘might induce a higher incidence of fits; and the sight of unexplained blood will lead to confusion and fear , which could lead to an increased incidence of fitting’ .
The report continues:
‘Bad and unruly behaviour’ associated with menstruation is another dimension in applications for, and authorisations of sterilisation of young disabled girls and women…
In a 2011 application to the NSW Guardianship Tribunal , a specialist gynaecologist (Dr HJK) lodged an application to perform a sterilisation procedure on a 22 year old woman with Down Syndrome. In [his] application form Dr HJK recorded the proposed treatment, but he did not provide any details of the treatment , its consequences or provide details of complications likely to be associated with the procedure. He did record that Miss XTV has Down’s Syndrome and that ‘Patient becomes distressed and difficult to manage during menstruation’ . The ‘ behaviour management problems during menstruation’ identified by Miss XTV ‘ s mother in the application , and supported by the gynaecologist, included that Miss XTV became ‘obsessive with possessions; exhibited anxiety at any change in circumstance and routine; regressed with self-help skills; and developed a phobia about barricades on upper floors of shopping centres ‘.
All of the application was dismissed in 2012. The tribunal stated:
We take this opportunity to note that should the alternate procedure of the insertion of a Mirena IUCD not be carried out, or carried out but not prove effective, and/or other causes of Miss XTV’s behaviours be eliminated, the…onus required to be satisfied to give consent to endometrial ablation may be met. In those circumstances there is nothing to prevent a further application to the Tribunal for consent.
The report goes on to read—and this is a point that I want to make very strongly, and the report makes it very eloquently, so I want to again read from this report:
In terms of the ‘burden’ on families of the care of girls and women with disabilities, lack of resources and appropriate education and support services, respite care, school and post-school options, see many families already struggling to manage the care of their girl or young woman with disabilities. Faced with the prospect of added personal care tasks in dealing with menstruation and in the limited availability or accessibility of specific reproductive health and training services (including those for menstrual management), families may well see sterilisation as the only option open to them. The denial of a young woman’s human rights through the performance of an irreversible medical intervention with long term physical and psychological health risks is wrongly seen as the most appropriate solution to the social problem of lack of services and support.
Evidence suggests however that menstrual and contraceptive concerns, even for women and girls with high support needs can be successfully met with approaches usually taken with non-disabled women and girls. Research has found that when parents and carers are given appropriate support and resources the issue of sterilisation loses potency.
The report continues:
A diagnosis of intellectual disability does not by itself constitute a clinical reason for sterilisation. The onset of menstruation is the same in girls with and without intellectual disabilities, and girls with intellectual disabilities present with the same types of common menstrual problems as the rest of the young female population. Arguments for elimination of menstruation in girls and young women with disabilities are primarily about social taboos.
Sterilisation is not ‘a treatment of choice’ for non-disabled females who are approaching menstruation, who menstruate, or who experience menstrual problems. Like their non-disabled counterparts, women and girls with disabilities have the right to bodily integrity, the right to procreate, the right to sexual pleasure and expression, the right for their bodies to develop in a natural way, and the right to be parents.
Then of course we get onto the issue of the perceived incapacity for parenthood, which many people with disabilities face. The report on this issue reads:
Australia has a history of removing children from their natural parents based on the personal characteristic of the parents, such as indigenous background or marital status. In Australia today, a parent with a disability is up to ten times more likely than other parents to have a child removed from their care.
I will conclude my remarks after the dinner break.
The Hon. K.L. VINCENT: I think when we left off we were up to the discussion around the incapacity or perceived incapacity of people with disabilities to parent, and how that sometimes leads to the decision to sterilise and thereby eliminate the possibility of becoming a parent. Certainly, there have been many policies in Australia that have seen the forced removal of children from parents including, of course, people of Aboriginal backgrounds and people based on their marital status. In present-day Australia, it is still not uncommon to hear of parents with disabilities having their children removed from their care on the grounds of their disability, even if their need for support is not properly assessed.
It is these widely-held views that disabled women, in particular, cannot be effective parents that leads to pressure for them to be sterilised. That is another issue that we face as well, and that issue indicates very strongly that this is not even about sterilisation or menstrual management. It is not about any of those things. It is about society’s perception of the capacities of people with disability. At every turn they are demonised, they are not trusted and they are not supported to achieve what they could achieve with support, because we prevent them from having children but, at the same time, if they do have children we take them away.
Clearly, it is not just about the menstrual management and the biological function but about the societal perception of people with disabilities which continues to be based on what George W. Bush once accurately termed ‘the burden of low expectation’. I certainly do not often agree with George W. Bush, but I think he got it right in that instance.
I want to talk about the fact that sterilisation is often seen as being in the best interests of the person on whom the procedure is being performed. This ideology, in effect, does not meet the best interests of the person with a disability, but has quite the opposite effect. It results in disciplinary attitudes and actions against girls and women with disability in particular, and has only served to facilitate the practice of forced sterilisation. We are yet to hear of a case where somebody has said, ‘Okay, it might be in the best interest of this person to be left alone and to figure out what they want to do in their life.’
In fact, the UN Convention on the Rights of the Child has made it clear that the principle of ‘in the best interest of a child’ cannot be used to justify practices which conflict with the child’s human dignity and right to physical integrity. Clearly, ‘in the best interest’ cannot be used as a reason to take away somebody’s natural bodily function unless, of course, there are, as I said, medical indications, where not performing that procedure would result in severe negative impacts on a person’s health or longevity and so on.
I want to touch on just a few quotes, and these are quotes, so I hope you will forgive me for reading them out, but the reason that I want to touch on them is that I think they talk about the long-reaching effect that forced sterilisation has on women, in particular with disabilities. One woman said, ‘It has resulted in the loss of my identity as a woman and as a sexual being.’ Another person says, ‘I have been denied the same joys and aspirations as other women.’ Another says, ‘It stops us from having children if we want to.’ Another says, ‘I worry about the future health effects like osteoporosis and other problems.’ Another says, ‘The fact that services are not there is no reason for sterilisation,’ and that certainly goes to what we talked about before and what is mentioned in this motion where it says that sterilisation must only be an option when all other measures, including increased support, have been exhausted.
Interestingly, another woman says, ‘I want to experience a period.’ So often we hear those stories that I touched upon earlier where people presume that they are taking away from a woman the pain, discomfort and inconvenience of menstruation, but no-one has actually ever asked that woman whether she wants to experience that and whether she would like to have the choice to decide whether it is too much for her to bear or not. So just let that sink in—’I want to experience a period.’ Another woman says:
If they told me the truth and asked me, I would have shouted no. My sterilisation makes me feel like I’m less of a woman when I have sex because I am not normal down there. When I see other mums holding their babies I look away and cry because I won’t ever know that happiness.
A final quote:
I was sterilised and I wasn’t even told when I was getting it done. The specialist told mum about it but I didn’t know I’d had it done until I was 18.
It is clear that women with disabilities do have the capacity to make choices about their reproductive health, their bodily integrity, their autonomy and their futures, but to do that we need to be supported. We need to have accessible education about these things. We need to have a societal discussion that focuses on presumed capacity rather than incapacity that we talked about before and, most of all, we need a government that will take leadership on this.
That is the final point that I want to make in my contribution today, because when I first heard about the case of Charley Hooper in the media, I wrote to the Minister for Health in the other place seeking his perspective on whether such a case might be able to occur in Australia and in South Australia in particular. I was particularly interested in the idea of that loophole that we talked about before where Charley Hooper could not find a doctor to approve the initial procedure in New Zealand but found one in South Korea, and then fell into this bizarre ethical loophole where the doctors would then maintain it even though they did not condone it being done in the first place.
The minister wrote back to me (and I apologise that I do not have a copy of his letter with me this evening, but I am sure that if I misquote him in any way he will be quick to tell me, but I will certainly be making an effort not to do that), and he assured me that in Australia we need court approval for sterilisation and other extreme medical procedures, including growth attenuation. Of course we have other statutory offices like the Office of the Public Advocate as a back up, so to speak. Certainly I am very pleased we have those procedures in place, but given some of the loopholes or cases we talked about earlier in those quotes, where courts have deemed sterilisation to be necessary, even when there is not a clear medical indication I am not convinced that that on its own is enough.
The minister’s letter then closed with words to the effect of, ‘Australia is also a signatory to the United Nations Convention on the Rights of Persons with Disabilities, which protects the rights of people with disabilities’. With all due respect to the minister, it is certainly not news to me that Australia is a signatory to the UNCRPD, which of course is a document putting in place standards and guidelines concerning the legal, social and political rights and freedoms of all persons with disability, particularly around gender.
But the fact of the matter is that as well written a document as it is, the UNCRPD is a document—it is just that, it is a piece of paper. Certainly it is a very aspirational, very ambitious, document, and certainly puts in place some standards and guidelines that we should all work toward implementing, but the document itself cannot implement those. Without proper action from government, the guidelines in that document will come to little or in fact no good.
What might interest the minister, if he is so convinced that the UNCRPD protects people with disabilities in and of itself, is that the United Nations as a body has in fact recognised that this is not the case. In fact, in July 2010, at its 46th session, the UN Committee on the Elimination of Discrimination Against Women (or the CEDAW) expressed its concern in its concluding observations on Australia report, the ongoing practice of non-therapeutic sterilisation of women and girls with disabilities, and recommended that the Australian government enact national legislation prohibiting, except where there is a serious threat to life or health, the use of sterilisation of girls, regardless of whether they have a disability (adult women with disabilities), in the absence of their fully informed and free consent.
That is exactly what we are debating here today: the ability of women and girls with disabilities, with or without disabilities, to make fully informed, free consent about our futures. Certainly of course there are many reasons why their support does not come. Ultimately it is cheaper to sterilise someone than it is to provide accessible ongoing education, hoists, lifts and all those other supports.
Let me put it this way, and when I put it this way I want you to think about quotes from those women who have experienced forced and coerced sterilisation without their consent: if you are paying for something with a piece of your body, if you are paying for something with your autonomy, if you are paying for something with your sense of integrity, if you are paying for something with your sense of gender and your sense of identity, if you are paying for something with the future that you had perceived for yourself, if you are a person who planned on having children and now cannot do so because of the decisions that were made for you by others, then it is not cheap. It is not cheap to pay for things with the souls of South Australians, the integrity of South Australians, the futures of South Australians and the rights of South Australians.
So, certainly I hope that the Minister for Health will join us in ensuring that on the state level we have legislation and other measures in place prohibiting the non-therapeutic, non-medical sterilisation of women and girls with disabilities, and I certainly would also like to see him advocating this on a national level as well. As I have said, the CEDAW, Women with Disabilities Australia and the World Health Organisation have all long called for a legislative nationally consistent ban on the non-therapeutic, non-medical sterilisation of women with disabilities. To date, the Australian government has failed to comply with that recommendation.
I am acutely aware that given that this motion was based on the cases of Ashley X and Charley Hooper they are probably the people whom I have spent the least time talking about in my contribution today, but that is because, simply, it is not about Charley Hooper and it is not about Ashley X; it is about the fact that we have legislation and that we have a societal attitude still in modern day South Australia that allows this practice to happen, and unfortunately Ashley X and Charley Hooper are just two examples of those people.
Certainly, we would like to see the minister work for a more consistent approach on this and keep a more consistent eye on this issue, because it will not properly be dealt with on a case-by-case basis. It needs a concerted, concentrated, conscious effort, because if, as the minister says, we are signatory to the UNCRPD and we believe in the legal autonomy and the bodily autonomy, integrity and capacity of every person, then those things must always be recognised as human rights and thus must be afforded to every human, every time, every day, consciously and continually, without exception and without excuses.
Debate adjourned on motion of Hon. J.A. Darley.
