‘Moving Forward or Losing Ground? The Sterilisation of Women and Girls with Disabilities in Australia’
Written by Leanne Dowse for Women With Disabilities Australia (WWDA). This paper was presented to Disabled Peoples’ International (DPI) World Summit, Winnipeg, September 8-10, 2004. Copyright WWDA 2004. Women With Disabilities Australia (WWDA) gratefully acknowledges the support of the Global Fund for Women (GFW) which provided a travel grant to enable WWDA to present this paper at the DPI World Summit.
The forced sterilisation of disabled women and girls is an act of unnecessary and dehumanising violence which denies the right to bodily integrity. Forced sterilisation refers to medical procedures which permanently remove an individuals ability to reproduce and are conducted without the consent of the individual. In many countries across the world this practice continues to be debated and justified by governments, legal, medical and other professionals and even family members and carers as being in the ‘best interests’ of disabled women and girls. In reality the justification has more to do with eugenic fears, the best interest of the state, community or family and the social control of the unruly bodies of disabled women and girls. Of great concern to the disability rights movement is the absence of the voices of disabled women and girls who have been or may be affected by forced sterilisation. In order to address this issue in Australia, Women with Disabilities Australia (WWDA) conducted a National Project on the Sterilisation and Reproductive Health of Women and Girls with Disabilities. The project brought together disabled women and girls in a safe space to share their experiences, name the impacts of forced sterilisation and identify future actions. The resulting report “Moving Forward” recommended the banning of all sterilisations of girls under the age of 18 years and the prohibition of sterilisation of adults in the absence of informed consent, except in circumstances where there is a serious threat to health or life.
The report also outlined a program of reconciliation; co-ordinated legislative and policy development; information, support and service models; consent considerations; approaches to reproductive health care and education; and data collection. Despite these strong calls from disabled women and their organisations the Australian Government has to date failed to substantially address and respond to any of the report’s recommendations and has pushed ahead with a proposal for uniform national legislation to set out how the sterilisation of minors with a decision-making disability can be authorised. This paper outlines WWDA’s work in the area, traces developments in Australia and discusses some of the critical issues in the consideration of sterilisation and reproductive rights as a human rights issue.
The forced sterilisation of disabled women and girls is an act of unnecessary and dehumanising violence which denies an individual’s basic human right to bodily integrity and to bear children and which results in adverse life-long physical and mental health effects. In the 21st century in countries across the world, governments, medical, legal and other professionals and in some cases families and carers continue to promote sterilisation as being in the ‘best interest’ of disabled women and girls (Diekema 2003; Brady, Briton and Grover 2001; Raye 1999). In reality this justification often has more to do with eugenic fears of disabled women producing disabled children, the best interest of the state, community or family or the social control of the unruly bodies of disabled women and girls. The issue affects the lives of women and girls with all forms of impairment including physical, sensory and psychiatric. In particular the lives of women with intellectual disabilities are almost invariably touched by the issue at some time or other.
The practice of forced sterilisation is itself part of a broader pattern of denial of human and reproductive rights of disabled women which also includes systematic exclusion from appropriate reproductive health care and sexual health screening, limited contraceptive choices, a focus on menstrual suppression, poorly managed pregnancy and birth, selective or coerced abortion and the denial of rights to parenting (Steinstra and Gucciardi 2002; Asch, 1999). These practices are framed within traditional social attitudes to disability that frame the experience as a personal tragedy or a matter for medical management and rehabilitation. The limited debates which have occurred about sterilisation have predominantly been had between legislators, medical, legal and other professionals and parents and carers but have seldom included disabled women and girls who have had little opportunity to speak out about their experiences or to participate in legislative, policy and program development.
The Work of Women with Disabilities Australia (WWDA)
Women with Disabilities Australia (WWDA), the national peak organisation for disabled women in Australia, is made up of women with disabilities and their organisations and networks across the country. It is run by women with disabilities, for women with disabilities and aims to increase awareness of, and addresses issues faced by women with disabilities in the Australian community. WWDA works for systemic change at all levels of society. As part of its work in providing opportunities for disabled women to identify and discuss issues of common interest, WWDA identified the need to address the issues of sterilisation and reproductive health as they affect women with disabilities. Despite developments in legislation which had been ongoing since the early 1990s, the voices of disabled women were absent from the limited debate, research and literature that had taken place in Australia. WWDA saw the need for a project to address the issues for women whose lives had been affected, and to redress the imbalance which has seen ‘experts’ speaking on behalf of and making decisions which affect the lives of disabled women.
In 2001 WWDA received funding from the Federal Government, through the Office of the Status of Women to conduct a national project on the issue. The project brief was very clearly to enable women with disabilities to reclaim their issue, and to express their concerns, stories, suggestions and ideas. It engaged with disabled women as participants, advisers and workers on the project. At the outset the project was titled “Sterilisation and Reproductive Rights of Women and Girls with Disabilities” however funding was approved only on the proviso that the title of the project be changed to “Sterilisation and Reproductive Health of Women and Girls with Disabilities”. This small one word difference speaks volumes about the underlying current in the national approach to reproductive issues for disabled women and girls in Australia.
The National Project on Sterilisation and Reproductive Health of Women and Girls with Disabilities
The National Project on Sterilisation and Reproductive Health of Women and Girls with Disabilities included several components:
- A review of the national and international developments;
- The staging of a National Forum on Sterilisation and Reproductive Health of Women and Girls in which women and girls with disabilities came together in a safe and secure environment to speak out about their experiences; and
- The opportunity for disabled women to get together with academics, researchers and service providers to critically analyse the issue and develop strategies to advance debate and action.
The resulting report Moving Forward: Sterilisation and Reproductive Health of Women and Girls with Disabilities (Dowse and Frohmader 2001) identified the range of critical issues that play into the broader societal debates, legislative processes, policy and service approaches to sterilisation and reproductive rights. These issues include the ways in which assumptions about the nature of the disability as a personal tragedy or medical problem (rather than an issue of social organisation) blend with stereotypical views of disabled women as asexual and incapable of parenting to frame social attitudes to reproductive rights for disabled women. These assumptions manifest as the denial of human rights to individual value and autonomy, to bodily integrity and to reproduction and parenting.
The report identified a range of specific matters which are critical to progressing debates about sterilisation. These include redressing the lack of research about the physical and mental health effects on women and girls (especially on those sterilised before the onset of menstruation) and the importance of acknowledging the impact of a predominantly legalistic approach which limits the debate to legislative reform processes and jurisdictional boundaries and which uncritically support mechanisms for authorisation. Other critical issues relate to capacity and consent such as whose ‘best interest’ is served by sterilisation; who can decide whether a girl or woman is able to or is likely to be able to give consent and at what age this judgement can be made. Consideration should also be given to the unintended consequences of sterilisation such as increased vulnerability to sexual abuse.
For the first time the personal experiences and perspectives of women and girls with disabilities who have experienced sterilisation and other denials of their rights to reproductive choice and parenting were included. The Report documents experiences in which women talk of sterilisation as a life sentence, of the loss and betrayal and the life long health effects they can anticipate. It carried the message that:
“We must listen to women and learn from them so that healing can take place for those already affected and safeguards can be put in place to prevent others being denied their human rights”. (Dowse and Frohmader 2001:63).
The report strongly argued that sterilisation can only be justified in circumstances where it is necessary to save life or preserve the health of the individual. It called on the Australian government to act immediately to
“ban all sterilisations of girls under the age of 18 years, unless sterilisation is being performed as a life saving measure or medical emergency. Implicit in this should be the recognition that girls under the age of 18 years cannot be expected to provide informed consent to sterilisation. Sterilisations should never occur until an age where the ability to give informed consent can be determined.” (Dowse and Frohmader 2001:5).
In the case of adult women with disabilities the report recommended that
“sterilisation be prohibited in the absence of the informed consent of the individual concerned, except in those circumstances where there is a serious threat to health or life”.(ibid).
The report culminated in a comprehensive set of recommendations aimed at redressing past injustices and setting out a plan of action to ensure that the Australian government and community respects the human rights of women and girls with disabilities and supports them and their families to make informed choices about their bodies and their reproductive lives. These included:
1. Reconciliation: including financial compensation, support and counselling for survivors of forced sterilisation.
2. Co-ordinated Approach to Legislative and Policy Development: including a National Working Party (involving disabled women) to develop uniform measures based on a human rights approach which apply across all States of Australia.
3. Information, Support and Service Models: including development of accessible resources; best practice models for providing support to women and a National Reproductive Rights Network comprising women with disabilities, service providers, policy makers and others.
4. Consent: including banning sterilisation of girls under 18 years and for those over 18 years in the absence of informed consent; review of currently used procedures for establishing capacity to consent and establishment of an independent mechanism to assess capacity to give consent.
5. Reproductive Health Care: including research into the incidence and effects of forced sterilisation; investigation of menstrual suppression practices, contraception and substitute decision making; information for medical personnel and the development of national sexual health protocols for women with disabilities.
6. Data Collection: including assessment of current data collection methods and development of more accurate methods for the collection of reliable statistics on forced sterilisation.
7. Education: including diversity models in national protocols for health education promoting positive images of disabled people as sexual beings and parents and development of a national education project to inform women with disabilities of their reproductive rights.
The WWDA report ‘Moving Forward’ achieved international acclaim as “a very fine and valuable report…which is an excellent resource for anyone interested in this important issue” (Shakespeare 2001) and much “more than a thoroughly comprehensive review of the current status of reproductive rights for women and girls with disabilities, rather a blueprint for women everywhere who value basic human rights and who seek to reclaim personal choice within their society” (Saunders 2002). However more than three years on from its release, the Australian government has largely failed to substantially address and respond to any of the reports recommendations. Instead it has pushed ahead with a proposal for uniform national legislation to set out how the sterilisation of minors with a decision-making disability can be authorised.
In the last 20 years and particularly in the last 10 years, the issue of sterilisation has moved into the public forum of the courts and been the subject of investigation by law reform bodies in the UK, Canada, New Zealand and in Australia (Jones and Marks 1997). There has been some attempt to address the issue as one of human rights, seen for instance in legal cases which appear to be based on the discourse of rights. However in many countries, including Australia, changing the direction of government legislative and policy approaches to the sterilisation and reproductive rights of disabled women and girls continues to be very difficult. To understand why we must look at both the way the issue of sterilisation of disabled women is talked about and at the broader issues which come to bear on the decision to sterilise.
What Are We Talking About?
When we talk about sterilisation we need to be clear about the language we use and the way this affects how we think about the issue. The term sterilisation refers to surgical intervention that results either directly or indirectly in the termination of an individual’s capacity to reproduce. Forced sterilisation refers to the performance of a procedure which results in sterilisation in the absence of the consent of the individual who undergoes the procedure. This is considered to have occurred if the procedure is carried out in circumstances other than where there is a serious threat to health or life. This approach to naming sterilisation is underpinned by a human rights perspective which holds that all individuals have the right to bodily integrity.
Debates about sterilisation are commonly advanced by legislators, medical and legal or disability ‘professionals’. In these instances the vocabulary used includes terms such as non/therapeutic, in/voluntary, un/authorised, un/lawful, and non/consensual sterilisation. Each of these terms derive from particular perspectives which take as their starting point the gendered, disablist view that the menstruation, sexuality and reproductive lives of disabled women and girls are the legitimate domain of legal, medical or other experts to determine. The work of WWDA has clearly demonstrated that these terms and the underlying assumptions that drive their use actively undermine the lived experience of disabled women and girls and creates the conditions for the infringement of their human rights. This kind of terminology sanitises the nature of a forced or coerced sterilisation which occurs without consent. For the women and girls affected, it obscures the fact that they have undergone a medical procedure, often at a very young age, which removes non-diseased body parts which are essential to their on-going health. It conceals the violation of their rights to bodily integrity and to bear children and renders insignificant the life long physical, social and emotional consequences which result.
Why are Disabled Women and Girls Still Being Sterilised?
Despite strong condemnation of compulsory or forced sterilisation from many sources including women’s organisations, disability rights organisations and human rights bodies such as the Committee on the Elimination of Discrimination Against Women (CEDAW), women with disabilities still face a serious threat of forced sterilisation (Raye, 1999). On a global level women and girls with disabilities are subject to medical procedures which result in sterilisation which are preformed without their consent (Reilly, 1991; Furminger-Delisle, 1996; Brady and Grover 1997; Tsuchiya, 1997; Zavirsek, 1997; Kaban, 1998; Diederich & Moyse, 2001; Ziegler, 2003).
The reasons used to justify forced sterilisations generally fall into three broad categories:
1. Genetic/Eugenic – based on the fear that disabled women will re/produce children with genetic defects. This view continues in spite of evidence suggesting that the causes of impairment are overwhelmingly social and environmental (including war, poverty and environmental degradation) and only a small number are related to genetic causes.
2. For the good of the state, community or family – arguments here centre on the ‘burden’ that disabled women and girls and their potentially disabled offspring place on the resources and services funded by the state and provided through the community. A related line of argument is the added burden of care that menstrual and contraceptive management places on already overstretched families and carers. Evidence suggests however that menstrual and contraceptive concerns, even for women and girls with high support needs can be successfully met with approaches normally taken with non-disabled women (Grover 2002; Elkins, Gafford, Wilks et al 1986; Palmer, 1999). The failure of governments to adequately develop and resource support structures and services for disabled women and girls and their families and carers must not be taken as reason enough for sterilisation. Indeed evidence suggests that when parents are given appropriate support and resources the issue of sterilisation loses potency.
3. Incapacity for parenthood – widely held societal attitudes that disabled women cannot be effective parents mean there is pressure to prevent pregnancy in disabled women. These judgements are based on subjective ideas about what is ‘good’ or ‘bad’ parenting, yet there is ample evidence to suggest that many disabled women are as capable of parenting as their non-disabled sisters (Asch 2001).
Clearly despite paying lip service to human rights in contemporary social approaches to disability, issues such as those outlined here continue to hold legitimacy for legislators, medical, legal and other disability professionals and to drive sterilisation agendas across the world.
The Situation in Australia
In Australia the issue of sterilisation has been the subject of debate since the early 1980s when it became clear that many women with disabilities were being sterilised without their consent and in many cases without their knowledge – a practice which almost certainly had its roots in the coercive government sanctioned mass sterilisation of disabled women in pre-war Australia (Goldhar 1991). It was apparent that this was happening with the informal consent of family, carers or doctors and without public scrutiny or accountability (Cooke, Topp & Webster 1994). In 1992 in a case now known as Marion’s Case (Secretary, Department of Health and Community Services (NT) v. JWB and SMB), an application was made to the High Court of Australia on appeal from the Family Court in relation to a teenage girl with intellectual disability. The application was for a ‘non-therapeutic’ surgical sterilisation in order to manage menstruation and prevent pregnancy. The High Court found that fundamental questions of human rights such as the right to reproduce should be decided by the courts rather than by parents, carers or medical practitioners. While this decision leant support to the rights of people with disabilities to be included in the community and has assumed symbolic importance, subsequent judicial decisions and social practices have failed to give full effect to the promise of Marion’s case (Jones and Basser Marks 2001). In reality considerations about forced sterilisation in Australia remain effectively mired in an ongoing legalistic debate about who can authorise sterilisation, for whom, under what circumstances and within which jurisdiction.
Since 1992, in addition to the work of WWDA (2001), there have been a number of inquiries undertaken by the Human Rights and Equal Opportunity Commission (Brady and Grover 1997; Brady, Briton and Grover 2001) and others (Family Law Council 1994) which have looked at issues such as legislative responses, approaches to authorisation, jurisdictional issues and incidence. These have reinforced the fact that despite what might be seen as the best intentions of any legislation to protect the human rights of the vulnerable, it is clear that women and girls with disabilities continue to be sterilised by stealth. The number of women and girls affected is notoriously difficult to fix (Brady, Briton and Grover 2001) since the procedures used may not be monitored by current data collection regimes or may be performed on women and girls registered under false names. What is clear is that even in the face of possible criminal sanctions, families and carers continue to seek out – and medical practitioners continue to perform – procedures that result in sterilisation which are both unauthorised by the nation’s courts and tribunals and which are without the consent of the individual affected.
Despite these reports, demands from disability rights organisations and the work of WWDA, the Australia Government does not currently have a coherent national approach to sterilisation of women and girls with disabilities. Instead of developing universal legislation which protects their human rights and prohibits the sterilisation of women and children except in those circumstances where there is a threat to health or life, the Government has consistently taken the view that there are instances in which sterilisation can and should be authorised. In August 2003 the Standing Committee of Attorneys-General agreed that “a nationally consistent approach to the authorisation procedures required for the lawful sterilisation of minors with decision making disability is appropriate” (Standing Committee of Attorneys-General Working Group 2004). Further work on the issue of sterilisation from that time has been directed toward the goal of resolving jurisdictional issues between Guardianship Tribunals in various States and the Federal Courts and developing nationally consistent criteria which can be applied in all jurisdictions so that sterilisations can be authorised.
This approach has several extremely negative consequences for disabled women and girls in Australia. It clearly undermines the fundamental human rights of women and girls with disabilities; it takes no account of the social, cultural and economic conditions which drive the sterilisation agenda for families, carers and medical and other professionals; it takes no account of the long-term physical and mental health effects of sterilisation and effectively makes authorisation easier rather than more difficult to obtain. This kind of approach once again relegates the voice of disabled women and girls to the margins of the debate.
Lessons We Have Learned
Clearly the current approach taken by the Australian government and those of many other governments across the world, fail to protect the human rights of those most vulnerable members of our communities or promote their rights to bodily integrity, to make informed choices about their bodies and their reproductive lives. In working toward this goal, several lessons can be learned from the Australian experience. Women’s organisations and disability rights organisations must continue to work together to provide opportunities for disabled women to speak out about their experiences and to harness the power of those voices in staking a claim in debates about sterilisation and reproductive rights which have traditionally been dominated by legal, medical and other professionals. Approaches must be informed both by experience and by research which clearly sets out the long term physical and mental health effects that result from sterilisation. Debates must identify and take into account the cultural, social and economic issues that impact on the decision to sterilise or which result in women with disabilities being deprived of their rights to reproductive health care and education. Most importantly debates must be based on human rights principles which uphold the rights of all women to bodily integrity and to make informed choices about her reproductive life.
WWDA has called on disabled people and their allies the world over to demand their governments take all necessary steps to stop the sterilisation of disabled women and girls. In the era of human rights it is unacceptable for the practice of forced sterilisation to continue – that is – where consent cannot be gained sterilisation should never proceed. Instead we call on our own government and governments the world over to address the cultural, social and economic factors which drive the sterilisation agenda, to commit resources to assist disabled women and girls and their families and carers to access appropriate reproductive health care and support and to create the social context in which all women and girls are valued and respected.
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