Sterilisation of Women and Girls With Disabilities – A Literature Review
Written by Cathy Spicer for Women With Disabilities Australia (WWDA). Cathy Spicer conducted this Literature Review as part of a placement at Women With Disabilities Australia (WWDA) from her studies at the University of Canberra. Copyright Women With Disabilities Australia (WWDA) 1999.
In doing research on the topic of non-therapeutic sterilisation of women and girls with an intellectual disability, I discovered numerous medical, legal and academic sources but very little from the people who are subjected to this form of invasive and often irreversible surgical intervention. Searching the world wide web using the terms (either separately or in combination) sexuality; reproduction; sterilisation; therapeutic sterilisation; non-therapeutic sterilisation; handicap; impairment; disability; retarded; health; medical; spastic; mobility impaired; hysterectomy; genetic; defective, and eugenics, produced minimal results. This raised the question of whether women with an intellectual disability would be further disempowered through the difficulty of accessing information on sterilisation through either traditional means or an electronic medium. The literature for this review was acquired through The Department of Health and Family Services (Commonwealth), the databases – Sociofile, Health and Society, Austrom: Family and Psychlit, The National Library, the University of Canberra’s Library, Family Planning Australia and NSW, Intellectual Disability Rights Service (NSW) and the Disability Discrimination Office (Federal).
Non therapeutic sterilisation (an invasive medical procedure performed for non-life threatening reasons, that leaves a women infertile) of women with an intellectual disability is not a medical problem nor a legal problem. It is a social problem (Berg 1979, Kendrick 1979, Brady 1995/96/98, Hastings 1997). Non- therapeutic sterilisation reflects the perceptions of the majority in society. One perception is that these women’s right to maintain bodily integrity and personal inviolability is a matter for debate, not a basic human right. Too often the majority override the needs of the minority. These perceptions can be traced back to the eugenics movement (Ford 1996), where mass sterilisations occurred in institutions as a means to stop reproduction of apparent non-productive members of society and were supposedly in the best interests of not only society but the women involved (Gallichan 1929, Ford 1996).
Sterilisations on women with an intellectual disability were common in Australia before and after the Second World War. Irreversible sterilisation was rationalised on the basis that the operation was in the women’s ‘best interests’, the women would not have to be informed about menstruation or experience the discomfort and inconvenience of monthly periods. There would be no danger of pregnancy and the accompanying risk of ‘defective offspring’. Although the sterilisation of women with an intellectual disability has been a point for discussion for well over a decade, the debate within medical, social and legal circles remains concerned with whether the sterilisation of a women with an intellectual disability benefits the woman, their care giver, both or neither; whether the Family Court or individual state tribunals and guardianship boards are best placed to decide on the issue of consent for the sterilisation of a women with an intellectual disability; whether there are long term physical and emotional costs as a result of non-therapeutic sterilisation and whether these costs outweigh the ‘benefits’ of sterilisation.
Recent statistics report an increase in the rate of sterilisation procedures performed on women and young girls with an intellectual disability (Smith 1996, The Law Reform Commission 1994, Brady 1996, Brady & Grover 1997), although these figures do not appear to reflect the true rate of sterilisation. Statistics have only been gathered which reflect the rate of sterilisation performed on women with an intellectual disability in private hospitals and although legislation is meant to protect the rights of the individual, I was unable to find a case where a member of the medical profession was successfully prosecuted for the illegal sterilisation of a women with an intellectual disability, within Australia Legislation in each state appears to be reflective of how non-therapeutic sterilisation is viewed. In countries other than Australia, the attitude of the law to the sterilisation of children varies widely. Canada is the most restrictive, New Zealand the least (The Law Reform Commission of Western Australia 1994). Sweden recently approved a bill to compensate women with an intellectual disability who were forcibly sterilised between 1935 and 1975. The program was based on theories of eugenics – ‘weeding out the mentally disabled, epileptics or people with alleged social problems to create a stronger Swedish race.’ (Australian Broadcasting Corporation 1999)
What is meant by the term sterilisation?
A sterilisation procedure is one which renders an otherwise healthy and presumed fertile person incapable of being a parent: a women will be unable to conceive a child. (Law Reform Commission of Western Australia 1994).
There are many forms of sterilisation that ensure a women is either temporarily rendered infertile or remains permanently infertile. Procedures that cause permanent infertility include: tubal ligation (surgically severing or tying the fallopian tubes), ovariectomy (surgical removal of the ovaries) and hysterectomy (the surgical removal of the uterus and cervix). These procedures are generally not reversible (tubal ligations have occasionally been successfully reversed). Temporary and reversible infertility can be achieved through the taking of oral or injected contraceptives (Law Reform Commission 1994, Brady & Grover 1997).
Why do parents/care givers seek sterilisation of their daughters with an intellectual disability?
‘Parents seeking sterilisation orders are not always concerned only with contraception’ (The Law Reform Commission of Western Australia 1994). It has been proposed that parents and care givers seek consent for sterilisation as they believe that surgical sterilisation would resolve pain and physical discomfort such as cramps and ‘heavy’ bleeding which may be associated with menstruation; would ameliorate other medical conditions that might be effected by hormonal fluctuations (such as epilepsy); would ameliorate mood swings and behaviour thought to be associated with pre-menstrual tension and menstruation; would resolve difficult or inappropriate social behaviours associated with menstruation, or emotional reactions to menstruation; permanently stop menstruation to remove the young woman’s personal care tasks associated with menstrual management; ease the burden on parents and carers by eliminating menstrual management and related personal care tasks; eliminating the need for the young woman to learn personal care skills associated with menstruation; reduce the need for the young woman to be informed about menstruation and fertility or to learn protective behaviours, and prevent pregnancy (Brady & Grover 1997, The Law Reform Commission of Western Australia 1994, Tait, Carney & Deane 1994, Brady 1995/96/98, Smith 1996)
At a STAR Conference (On the Record 1990) women with an intellectual disability were able to express their own experiences of sterilisation. They are cited as saying “I went to hospital and instead of having my appendix out, I had a tubal ligation”; “after trying to have a baby for a long time I finally found out I had been sterilised when I was 14 living in an institution” and; “I was being pressured into having an abortion”. The women also stated the reasons they had been given on why sterilisation ‘was good for them’:
- She would not have to be informed about menstruation or learn about personal hygiene;
- She would not have to experience the discomfort and inconvenience of monthly periods;
- She would have no danger of pregnancy with all its accompanying pain and trauma;
- She would have no need for an abortion;
- Time would not be wasted on sex education;
- Women with an intellectual disability are unable to bring up children;
- Her child wouldn’t have normal parents;
- If she gets raped there’d be no worries about pregnancy;
- Her child may also have a disability.
(On the Record 1990)
Keyserlingk (1979) questioned ‘whose quality of life is sterilisation trying to maintain’?. In the ensuing ten years society’s perception of the worth of women with intellectual disability had not progressed very far. The aforementioned statement of reasons for why these women would achieve a better quality of life, if they were sterilised, demonstrates that although our vocabulary changed our thought patterns remained stagnant. Twenty years later the question posed by Keyserlingk remains unanswered.
Brady (1995/96/98) and with Grover (1997) has consistently claimed that if parents or care givers were offered alternatives to sterilisation, for example, respite, out of home and in-home care and special programs on hygiene and protective behaviours, the perceived need for non-therapeutic sterilisation would be eliminated. Brady claims that once parents are provided with alternatives the majority no longer seek consent to sterilise. Brady appears to be a most predominant writer in this field. As a medico-legal expert she has produced many quality works, with a consistent theme of reducing the perceived need for non-therapeutic sterilisation. She claims that once a case seeking consent for sterilisation reaches a court it should be considered a failure by the legal profession and as ‘the adversarial system and judicial processes create an environment where parties become locked in and wedded to winning (1996), the opportunity for parents to change their minds becomes reduced’. Therefore Brady believes that winning only comes when there is no need for the option of sterilisation. Brady, although impressive in her achievement of raising awareness around this issue, appears to view the emotive subject of sterilisation with a degree of detachment. She reports on actual events where parents have either successfully sought consent for the sterilisation of their daughters or where alternatives were sought and successfully implemented, but in none of her viewed 1995, 1996, 1997 or 1998 writings were the differing views of parents allowed to be told by parents, nor were the voices of the women who have experienced sterilisation allowed to be heard. Brady also did not question extensively how women could be illegally sterilised within the private or public hospital system without questions being asked by other specialists or theatre staff. Brady did claim that sterilisations could be performed under the guise of differing medical procedure, but even to the untrained eye the differences between an appendix and a uterus would be obvious. In a social, medical and legal context this question appears extremely pertinent.
Compared to the availability of academic literature, parental opinion and the views of women with an intellectual are scarce and extremely hard to find. Within Sterilisation and Mental Handicap (1979) two opposing parental views were found. Shirley Desroches supported the writings of Brady by claiming that as a parent she believed that there was no need for sterilisation, instead she advocated for education of both the parent and the child. Hugh McKay, on the other hand, was grateful that he and his wife had their ‘minor daughter sterilised before the current moratorium begun’. McKay stated that they successfully sought consent for the sterilisation of their daughter as she ‘would not be able to succeed in the task of child rearing’ and any ‘future child would suffer due to [their] daughter’s inability’.
Both parents agreed that each situation should be assessed on individual merits.
Smith reports in What Price a Womb and Sterilisation: a case for and against (Sydney Morning Herald 1996) the opposing views of two parents. One parent is of the belief that the procedure of sterilisation would not be performed on a healthy girl without an intellectual disability, therefore it should not be performed on a healthy child with an intellectual disability. The other parent stated that since their daughter was legally sterilised ‘they could not believe the wonderful improvement in (their daughters) quality of life’. The parents went on to say that ‘it cost thousands of dollars’ to go to court but they believed that sterilisation was such a serious step that permission should be sought from an independent authority (Smith 1996). In neither case did the daughter ‘speak’ about her understanding of the procedure.
Another article, offensively entitled Should These Women Be Allowed To Have Children’ (1998) provided the opportunity of a small insight into the lives of two women with an intellectual disability. Their personal stories were told by a third party rather than by the women themselves. One story focused on the grief of a women with an intellectual disability who ‘feels like less of a woman’ since her realisation that she had a radical hysterectomy at the age of 15. The other story was of a women with an intellectual disability who has two children (one child lives with her, the other is in foster care). It was said that this woman ‘recognised her own limitations’ and ‘could be said to be a successful loving mother’.
As stated before information on, and experiences of, sterilisation procedures as told by women with intellectual disabilities is extremely difficult to find.
The effects of non-therapeutic sterilisation
Brady and Grover state that girls with intellectual disability present the same types of common menstrual problems as the rest of the young female population. Hysterectomy and abdometrial ablation are commonly taken to be appropriate methods of menstrual management for girls with an intellectual disability, particularly when menstruation presents as difficult because of heavy and ongoing bleeding, persistent pain or cyclical mood swings and idiosyncratic or other problem behaviours (Brady and Grover 1997). All intrusive medical procedures carry a risk of side effects. To assume that the reproductive organs either individually or collectively have minimal function or their function can be maintained chemically is naive. The physical effects of sterilisation have been well documented in numerous medical journals but the psychological consequences of such operations are rarely discussed. To date, minimal research has been conducted regarding the long term psychological consequences of therapeutic and non-therapeutic sterilisation, before and after the onset of menstruation, on women and children with intellectual disability. My research was unable to find documentation in this area. It could be presumed that the lack of literature if reflective of the minimal interest in hearing the views of women with an intellectual disability.
Marion’s parents applied to the Family Court of Australia for an order authorising the removal of her ovaries and womb as they believed that this procedure would enhance Marion’s quality of life and she was experiencing psychological and behavioural problems caused by hormonal changes. In 1990 the court, by a majority of 2/1, decided that the parents were able to authorise her sterilisation without a court order (Family Matters 1992, Brady 1996, The Law Reform Commission of Western Australia 1994). Although Chief Justice Nicholson CJ agreed with the ruling he claimed that ‘a difficult and complex area of the law on which opinions of judges may differ’ should be considered and clarified by the High Court. An appeal to the High Court was initiated by the Secretary of the Northern Territory Department of Health and Community Services in 1992. After intervention from the Commonwealth, New South Wales, South Australian and Queensland Attorneys-General and the Human Rights Commission (Family Matters 1992), the High Court in a majority judgement of 4/3 decided that parents, due to possible conflict of interest, were not best placed to decide whether sterilisation was in their child’s best interest (unless that sterilisation was for therapeutic purposes) and that sterilisation of a minor could not occur without consent from a Court.
The re Marion outcome clearly stated that non-therapeutic sterilisation of children with disabilities could not take place without consent being sought from a court. The raising of awareness surrounding the legalities of non-therapeutic sterilisation and the alternative options available has been achieved through law and medical journals, academic works, newspapers and popular women’s magazines. Extensive coverage has been attained but with little success. Female children as young as four years old are still being subjected to this procedure (The Law Reform Commission 1994, Australian Family Law Journal 1991, Brady 1996, Hastings 1997, Clack 1997, Carter 1997, Meryment 1996, Smith 1996, Farouque 1997, Hammond 1993, Mapstone 1997).
In a 1997 report commissioned by the Federal Disability Discrimination Commissioner, The Sterilisation of Girls and Young Women in Australia: A legal, Medical and Social Context, Brady and Grover claimed that: ‘Courts and tribunals have authorised a total of 17 sterilisations……Insurance Commission shows at least 1045 girls have been sterilisations which qualify for a Medicare benefit and for which a claim has been processed. It excludes sterilisations carried out by hospital doctors on public patients in public hospitals. Comparisons with other data sources suggest that the true number is much greater, perhaps by a factor of several times’.
The Family Court vs Tribunals
There has been a continuing debate on whether the ‘best interests’ of a child with regard to consent to sterilise, are better served by the Family Court or state tribunals and guardianship boards. The High Court in Re Marion argued that as ‘sterilisation is a special case…it is therefore the courts who are best equipped to make such decisions’ (Newnham 1996). The majority in Re Marion conceded that: ‘it is too costly for most parents to fund court proceedings; delay is likely to cause painful inconvenience; and the strictly adversarial process of the court is very often unsuitable for arriving at this kind of decision. These are clear indications of the need for legislative reform, since a more appropriate process for decision-making is only possible in this way’ (Newnham 1996).
Uniform legislation between states and between adult and children is currently not present within Australia. Parents can at present ‘forum’ and ‘doctor’ shop to achieve the outcome they wish (Carney 1997). Currently, consent for sterilisation of an adult is generally referred to the guardianship boards. For children, consent is usually sought through the Family Court (Tait, Carney and Deane 1994) as the Family Court is responsible for the welfare of children born within marriage. The sterilisation of minors is seen as a ‘special case’ which is an extension of the Family Court’s powers (Newnham 1996). The Family Court is perceived to be restricted in its ability to reach a ‘best interest’ decision as the court on one judge being provided with vast amounts of relevant information. If any information is not present the outcome could be compromised. Courts are also more prone than guardianship boards to place more weight on the difficulties experienced by parents in raising a child with an intellectual disability. Whereas guardianship boards tend towards the needs of the child. The majority of court decisions have favoured sterilisation. The Family Law Council (1994) advocates that ‘specially’ trained judges within the Family Court would best serve the needs of the child.
The guardianship board is perceived as being a less restrictive environment within which the decision of consent for sterilisation relies upon varied expertise. Helen Newnham (1996) cites Blackwood (1991) saying ‘ the tribunal offers advantages over a court namely, a less adversarial forum, a multi-disciplinary approach and of great importance to all concerned, a quicker and cheaper process’.
The reference to ‘best interests’ is also a point of discussion amongst the legal profession. What constitute ‘best interest’? How do you ascertain what is in the best interests of the child. Should consent to sterilise be based on medical, legal, parental or social opinions? An attempt to ensure that the ‘best interests’ of an adult or child with an intellectual disability remain paramount during the seeking of consent, the Australian Law Reform Commission (1997), The Family Law Council (1994) and The Law Reform Commission of Western Australia have all documented criteria against which decisions of consent to sterilise could be judged. The Family Law Council (1994) and The Law Reform Commission of Western Australia (1997) both concluded that sterilisation of children should never occur for eugenic reasons; purely for contraceptive purposes, or as a means of avoiding or masking the consequences of sexual abuse. The Family Law Council added that sterilisation prior to the onset of menstruation based on predictions of future problems that might be encountered should not be a base upon which to decide in favour of sterilisation.
To further ensure that the child’s best interests remain predominant, The Family Law Council (1994) and The Australian Law Reform Commission (1997) recommended that the child should have their own representative within the court during all proceedings related to consent for sterilisation to ensure that all options are presented before his or her honour.
For as long as history has been recorded people with intellectual disabilities have been marginalised and women with an intellectual disability are on the receiving end of a dose of double marginalisation. Firstly they are women – which automatically demeans their value in our patriarchal society, and secondly they are not perceived to be ‘normal’ women. This perception allows society to believe that it is all right to objectify these women and debate their right to freedom of sexual expression, their right to maintain bodily integrity and their right to personal inviolability, as if they were a piece of meat under a microscope. As a society we would not complacently accept ‘normal’ girls and women being subjected to non-therapeutic sterilisation because they had mood swings, period pains, irregular, heavy or ongoing periods or their was a possibility of them being raped yet this form of ‘control’ is tolerated if the women or child has an intellectual disability. The following questions were raised within this literature research and they are unanswered:
- Are we as a society still practising a form of eugenics? – as the State and Federal governments’ do not appear to be able to justify to the community as a whole the expenditure needed to ensure that programs like respite, in home and out of home care and educational programs in the form of menstrual management and protective behaviours;
- How can a child go into an operating theatre and have their reproductive organs removed without anybody asking questions?;
- Why are G.P’s and specialists still performing these operations without authorisation from the courts?;
- With an abundance of academic, medical and legal literature available, do G.P’s and specialists still not understand or know of current legislation?;
- Why have women with intellectual disabilities who have experienced therapeutic and non-therapeutic sterilisation not been provided with the opportunity to speak about their experiences when so many speak on their behalf?, and
- Whose interest is the sterilisation of women and children with an intellectual disability in?