WWDA Policy & Position Paper: ‘The Development of Legislation to Authorise Procedures for the Sterilisation of Children with Intellectual Disabilities’


In November 2006, the Standing Committee of Attorneys-General (SCAG) released its draft Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006, which includes an outline of the procedures that jurisdictions could adopt in authorising the sterilisation of children who have an intellectual disability. This WWDA Policy and Position Paper was developed in response to the SCAG and endeavours to clearly articulate WWDA’s position on the issues. Prepared by Carolyn Frohmader for Women With Disabilities Australia (WWDA). Copyright WWDA June 2007.


1. About Women With Disabilities Australia (WWDA)

Women With Disabilities Australia (WWDA) is the peak organisation for women with all types of disabilities in Australia. WWDA is run by women with disabilities, for women with disabilities. It is the only organisation of its kind in Australia and one of only a very small number internationally. WWDA is inclusive and does not discriminate against any disability. WWDA is unique, in that it operates as a national disability organisation; a national women’s organisation; and a national human rights organisation. The aim of Women With Disabilities Australia (WWDA) is to be a national voice for the needs and rights of women with disabilities and a national force to improve the lives and life chances of women with disabilities. WWDA addresses disability within a social model, which identifies the barriers and restrictions facing women with disabilities as the focus for reform. More information about WWDA can be found at the organisation’s extensive website.


2. Background

In 2001, Women With Disabilities Australia (WWDA) the national peak body representing women and girls with disabilities in Australia, completed a national research study into sterilisation and reproductive health of women and girls with disabilities. This study reviewed international and national developments in the field, and integrated this for the first time with 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. 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, action taken to date by the Australian Government have failed to substantially address and respond to any of the report’s recommendations.

In August 2003, the Standing Committee of Attorneys-General (SCAG) (the national ministerial council made up of the Australian Attorney-General and the States and Territories Attorneys-General), agreed that a nationally consistent approach to the authorisation procedures required for the lawful sterilisation of minors is appropriate. A SCAG Working Group was formed after the August 2003 meeting to proceed with the task of developing a national framework. In November 2006, the SCAG released for consultation with selected stakeholders, its draft Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006. The draft model provisions set out the criteria and procedures that jurisdictions could adopt in authorising the sterilisation of children who have an intellectual disability to the extent that the child is incapable of giving informed consent to the sterilisation procedure. In April 2007, after having ‘noted the views expressed by stakeholders during the SCAG Working Group’s consultation on the draft Bill’, SCAG signaled its intention to continue developing the draft Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006.


3. The Position of Women With Disabilities Australia

3.1. WWDA does not support the development of a nationally consistent approach to the authorisation procedures required for the lawful sterilisation of children with an intellectual disability.

3.2. WWDA asserts that forced sterilisation is an act of unnecessary and dehumanising violence which denies a woman’s basic human right to bodily integrity and to bear children and which results in adverse life-long physical and mental health effects. Sterilisation of disabled women and girls is a form of social control in which a woman’s right to bodily integrity is denied often at the behest of parents and medical or other professionals, who deem this bodily violation ‘in her best interests’. Sterilisation, an irreversible medical procedure with lifelong physical, psychological and social consequences, if performed without consent, is a gross violation of human rights.

3.3. WWDA is of the view that sterilisation is a question for adulthood not childhood.

3.4. WWDA strongly recommends that the Australian Government, through its national ministerial council of Attorney’s General, develop universal legislation which prohibits sterilisation of children (regardless of disability) except in those circumstances where there is a serious threat to health or life. In the case of adults, WWDA also strongly recommends 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.

3.5. WWDA asserts that the development of national authorisation procedures for the sterilisation of children with intellectual disabilities – a response which focuses on jurisdictional and legal issues – ignores the fundamental human rights of women and girls with disabilities, and in so doing, relegates them to the extreme margins of the debate.

3.6. WWDA supports criminal sanctions in instances where sterilisation occurs without authorisation. Those who perform the procedures are in a position to know their legal obligations and should therefore be subject to criminal proceedings.

3.7. WWDA urges the Australian Government to implement in full, the recommendations from the ‘Moving Forward’ report.


4. What is Forced Sterilisation?

The term sterilisation refers to surgical intervention resulting 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 (Dowse & Frohmader 2001). This is a right upheld in a number of United Nations Conventions to which Australia is a signatory.

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 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. 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 (Dowse & Frohmader 2001).

In many countries across the world the practice of sterilisation 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 reasons used to justify forced sterilisations generally fall into three broad categories:

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.

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. 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 and carers are given appropriate support and resources the issue of sterilisation loses potency.

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 judgments 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 (Dowse & Frohmader 2001). Forced sterilisation can be used instead of putting adequate supports in place for the mother with disabilities.

Since the release of ‘Moving Forward’, WWDA has continued to work to have the issue of sterilisation and reproductive health of women and girls with disabilities progressed, and has clearly demonstrated that the issue of sterilisation is much broader than the development of uniform national legislation around sterilisation of minors with an intellectual disability. WWDA asserts that the practice of forced sterilisation is itself part of a broader pattern of denial of human and reproductive rights of disabled women. This denial 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. These practices are framed within traditional social attitudes to disability that denote the experience as a personal tragedy or a matter for medical management and rehabilitation (Dowse & Frohmader 2001).


5. Key Issues in the Development of Draft National Uniform Legislation in Australia

In November 2006, the Standing Committee of Attorneys-General (SCAG) released its draft Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006, which includes an outline of the procedures that jurisdictions could adopt in authorising the sterilisation of children who have an intellectual disability. Although SCAG has ‘noted the views expressed by stakeholders during the SCAG Working Group’s consultation on the draft Bill’, it has signaled its intention to continue developing the draft Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006, and is now ‘working to resolve the issues raised during consultation’.

The SCAG has consistently identified that the primary aim of legislation in this area is to protect the human rights of minors with a decision-making disability (SCAG 2004). In this context, WWDA raises the following key issues.

5.1. Application of human rights principles

People with an intellectual disability have the same human rights as people without intellectual disabilities. They 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 (IDRS 2006). The creation of legislation which enables authorisation of the sterilisation of children with intellectual disabilities, is in itself, a patent infringement of the human rights of those it seeks to protect. The principles upon which such legislation is grounded undermine the right to bodily integrity, the right to bear children and the right to individual value and autonomy. The Universal Declaration of Human Rights states that ‘all human beings are born free and equal in dignity and rights’. Therefore, in applying human rights principles to such legislation, the starting point should be whether others in the community would be subject to such a procedure. There are no instances where authorisations to sterilise have been sought for minors without intellectual disabilities in the absence of a threat to life or health. The sterilisation of a child in circumstances other than where there is a serious threat to the health or life of that child effectively denies the child present and future enjoyment of her or his human rights.

To create a legislative power to enable sterilisation of only those children with an intellectual disability perpetuates the myth that sterilisation is not a human rights issue but a disability issue – a perception which is common or somehow more acceptable for children with disabilities (IRDS 2006, PWDA 2006). As Brady (1998, 2001) states:

‘Sterilisation applications are not about medical problems but about social values, notions of worth, assumptions about the nature of intellectual disability and about a lack of services. In other words where there is no disease and the procedure would not be recommended for a non-disabled child with the same physical condition, the proposing of differential treatments ought be critically investigated.’

5.2. Pre-emptive Assumptions

The development of national authorisation procedures for the sterilisation of children with intellectual disabilities, for example as set out in the draft Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006 is grounded in a set of assumptions which although not overt, pre-empt a particular outcome. These include assumptions that:

    • while sterilisation cannot be condoned for a variety of reasons, there will be circumstances in which it is appropriate for minors to be sterilised. WWDA’s evidence indicates that there would be very rare cases where sterilisation of any minor could be justified.

 

    • sterilisation of children is an issue for parents and carers. Evidence suggests that when parents and carers are given appropriate support and resources the issue of sterilisation loses potency.

 

  • the State has a role in authorising such a procedure and that it should be facilitated. In developing national uniform authorisation procedures for the sterilisation of children with intellectual disabilities, the focus appears to be on making the process of authorisation administratively less burdensome for families, carers and the states and territories. The focus is not on the person with the disability. For example, the draft Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006, aims to make the process of authorisation less difficult and less expensive. Such a focus has the very real potential to make authorisation to sterilise a more frequent occurrence rather than more difficult (Dowse & Frohmader 2001).

5.3. Definitions, Terminology & Language

The lack of clear definitions and consistent language has been a criticism of SCAG’s work to date in this area. Issues papers released by SCAG (2004, 2006) along with the draft Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006 have made reference to a variety of terminologies including for example: ‘sterilisation’, ‘non-therapeutic sterilisation’, ‘non-therapeutic surgical sterilisation’, ‘special treatment’, ‘special procedures’, ‘decision-making disability’, and ‘intellectual disability’ with no clear and consistent definitions of these terms, or how they would be interpreted in any discussion about authorisation.

The SCAG Issues Paper (2006) suggested for example, that for the purposes of the draft Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006, psychiatric disabilities could be included in the definition of intellectual disabilities. Such a proposal by SCAG demonstrates not only a lack of knowledge on the part of the SCAG as to what intellectual disability is, but clearly highlights SCAG’s view that disability is the core eligibility requirement for sterilisation (IRDS 2006, PWDA 2006). Pinpointing ‘disability’ as a qualifying factor for authorising non-therapeutic sterilisation is discriminatory (PWDA 2006). Furthermore, the use of terms such as ‘intellectual disability’ and/or ‘decision-making disability’ implies that incapacity resides within the individual. This is problematic since incapacity can very often be a function of the environment and a lack of appropriate support for the individual (Dowse & Frohmader 2001).

‘Best interest’ is a reason used to justify the forced sterilisation of girls and women with disabilities. The SCAG draft Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006 uses ‘best interests of the child’ as a criterion to be satisfied when considering authorisation of a sterilisation. However, the term ‘best interests’ often has little to do with the disabled girls rights and more to do with social factors and the ‘burden of caring’. As Dowse & Frohmader (2001) point out:

‘In making judgments about best interests it is crucial that we are clear about whose best interests are really at stake. We need to be clear about whether ‘best interest’ is judged according to human rights principles or whether the judgment is about the ‘best compromise between the competing interests’ of parents, carers, service providers and policy makers. To really determine ‘best interest’ for women and girls with disabilities it is crucial to focus on the fact that a person will be subjected to an irreversible medical procedure with life long consequences without informed consent.’

5.4. Consideration of procedures and their consequences

In the case of sterilisation, the fact that a procedure may be ‘authorised’ or ‘lawful’ does not in any way obviate the reality that a woman with a disability, often a very young woman, undergoes a medical procedure to remove non-diseased parts of her body which are essential to her ongoing health. The long-term negative medical, social and psychological effects on women with disabilities are somehow deemed insignificant. In considering issues of sterilisation it is important to be clear that any sterilisation carried out without the informed consent of a person is a forced sterilisation and that applications to sterilise must be seen as procedures done to women with disabilities not procedures done for them (Dowse & Frohmader 2001).

Sterilisation has permanent, life-long consequences which are likely to be more significant and apparent during adulthood. Sterilisation will result in the permanent inability to reproduce and lowers parenting options for adoption or foster care (IRDS 2006). Grave health risks such as early onset menopause, osteoporosis and cardio-vascular disease can result from sterilisation of girls before they begin to menstruate (Dowse & Frohmader 2001). Similar effects arise from sterilisation in early puberty. Sterilisation can be detrimental to sexual pleasure on the basis that the uterus and the cervix play an important part in sexual satisfaction (IRDS 2006). Forced sterilisation can increase a disabled girl’s vulnerability to sexual abuse although the opposite is often cited in its justification. It can also inadvertently serve to cover-up the sexual abuse of women with disabilities, since pregnancy is often the only clear evidence that sexual abuse has occurred. Women who have been sterilised may also be assumed to be non-sexual and therefore will be more easily passed over for sexual and reproductive health screening (Dowse & Frohmader 2001, Brady 2001). The consequences of a wrong decision to sterilise are grave. The violations and harms associated with making a wrong decision cannot be rectified. Sterilisation is irreversible, and unlike other decisions it cannot be altered by a subsequent review of judicial decision-making (Brady 2001, O’Neill 1996).

The history of forced/involuntary sterilisation has shown that social institutions and the agents who operate within them will sometimes choose what is perceived to be a solution to a social dilemma at the expense of personal liberties and at the cost of an increase in personal suffering (Ricks & Dziegielewski 2000).

5.5. Compliance with international human rights treaties

A number of international human rights treaties to which Australia is a party, include articles dealing with the right to marry and found a family, protection of the family, mother and children. Articles also address the rights of the child to life and development; the rights of the child to protection from all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation including sexual abuse. The Convention on the Rights of the Child (CRC) for example, explicitly recognises that children with disabilities should enjoy all the rights set forth in the CRC, on an equal basis with others.

In its 2006 General Comment No. 9 on the Rights of Children with Disabilities, the Committee on the Rights of the Child expressed its deep concern about “the prevailing practice of forced sterilisation of children with disabilities, particularly girls with disabilities.” The Committee emphasised that forced sterilisation “seriously violates the right of the child to her or his physical integrity and results in adverse life-long physical and mental health effects.” The Committee urged States parties to “prohibit by law the sterilisation of children on grounds of disability.” In considering Australia’s report under Article 44 of the CRC (Fortieth Session), the Committee on the Rights of the Child encouraged Australia to: ‘prohibit the sterilisation of children, with or without disabilities…’ (46 (e) CRC/C/15/Add.268, Oct 2005).

Australia is a party to the International Covenant on Economic, Social and Cultural Rights (ICESC). The Committee on Economic, Social and Cultural Rights in its 1994 General Comment No.5 on Persons with Disabilities referred to the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, adopted by the General Assembly on 20 December 1993, stating that “persons with disabilities must not be denied the opportunity to experience their sexuality, have sexual relationships and experience parenthood”. The Committee emphasised that “[b]oth the sterilization of, and the performance of an abortion on, a woman with disabilities without her prior consent are serious violations of article 10 (2) [of the International Covenant on Economic, Social and Cultural Rights]”.

On 30 March 2007, Australia became a signatory to the United Nations Convention on the Rights of Persons with Disabilities (CRPWD), a human rights instrument which reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. Although signing the Convention does not bind Australia to enact any of its clauses, becoming a signatory ‘is a means of authentication and expresses the willingness of the signatory state to continue the treaty-making process’ (UN 1999) and ‘creates an obligation to refrain, in good faith, from acts that would defeat the object and the purpose of the treaty’ (UN 1999).

While the final text of the United Nations Convention on the Rights of Persons with Disabilities does not contain a specific article on sterilisation, several articles amount to a prohibition of such practice, including:

Article 23 Respect for home and the family – through measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others, ensuring: the right to marry, to found a family, to decide freely and freely and responsibly on the number and spacing of children, the right to reproductive and family planning education, and the rights of persons with disabilities, including children, to retain their fertility on an equal basis with others.

Article 5 Equality and non-discrimination – recognising that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law.

Article 17 Protecting the integrity of the person – recognising that every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.

Article 4 General obligations – to ensure and promote the full realisation of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability.

Article 16 Freedom from exploitation, violence and abuse – through legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects.

Article 7 Children with disabilities – to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.

Article 6 Women with disabilities – recognising that women and girls with disabilities are subject to multiple discrimination, and the need for measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms.

Article 25 Health – recognising that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.


Conclusion

This paper has sought to articulate WWDA’s position on the issue of the forced sterilisation of minors, particularly in the context of the Standing Committee of Attorneys-General (SCAG) work on the development of uniform legislation to authorize procedures for the sterilisation of children with an intellectual disability. This paper has raised a number of key issues that WWDA asserts must be thoroughly considered in this debate, including: the application of human rights principles; pre-emptive assumptions; definitions, terminology and language; the consideration of procedures and their consequences; and, compliance with international human rights treaties.

This paper argues that people with an intellectual disability have the same human rights as people without intellectual disabilities, and that the creation of legislation which enables authorisation of the sterilisation of children with intellectual disabilities, is in itself, a patent infringement of the human rights of those it seeks to protect.

In meeting its stated aim of ‘protecting the human rights of minors with a decision-making disability’ the Standing Committee of Attorneys-General (SCAG) is obliged to develop universal legislation which prohibits sterilisation of children (regardless of disability) except in those circumstances where there is a serious threat to health or life, and refrain from enacting legislation that raises concerns of compatibility with the objects and purposes of a number of international human rights treaties to which Australia is a signatory.


References

Brady, S. (1998) The Sterilisation of Children with Intellectual Disabilities – Defective Law, Unlawful Activity and the Need for a Service Oriented Approach. Australian Journal of Social Issues, Vol. 33, No. 2, pp. 155-177.

Brady, S. (2001) Sterilisation of Girls and Women with Intellectual Disabilities: Past & Present Justifications. Violence Against Women, Vol. 7, No. 4, pp. 432-461.

Dowse, L. & Frohmader, C. (2001) Moving Forward: Sterilisation and Reproductive Health of Women and Girls with Disabilities. Published by Women With Disabilities Australia (WWDA), Tasmania, Australia.

Intellectual Disability Rights Service (IRDS) (2006) Submission from Intellectual Disability Rights Service (‘IDRS’) on the Draft Model Bill to regulate the sterilisation of children with an intellectual disability. IRDS, Redfern, NSW. Available at: http://www.wwda.org.au/sterirds06.htm

O’Neill, N. (1996) Sterilisation Of Children With Intellectual Disabilities. Australian Journal of Human Rights, Vol.8. Available at: http://www.austlii.edu.au/au/journals/AJHR/1996/8.html

People With Disability Australia (PWDA) (2006) Submission from People With Disability Australia (PWDA) on the Draft Model Bill to regulate the sterilisation of children with an intellectual disability. PWDA, NSW. Available at: http://www.wwda.org.au/sterpwda06.htm

Ricks, J. & Dziegielewski, S. (2000) Involuntary Sterilization and the Mentally Retarded, Revisited. Human Rights Review, Oct-Dec, pp. 125-133.

Standing Committee of Attorneys-General (SCAG) Working Group (2004) Non-Therapeutic Sterilisation of Minors with a Decision-Making Disability – Issues Paper. Available at: http://www.wwda.org.au/scagpap1.htm

Standing Committee of Attorneys-General (SCAG) Working Group (2006) Issues Paper on the Sterilisation of Intellectually Disabled Minors. Available at: http://www.wwda.org.au/scagpap2.htm

Standing Committee of Attorneys-General (SCAG) Working Group (2006) Draft 17: Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006. Available at: http://www.wwda.org.au/sterbill06.pdf

United Nations Universal Declaration on Human Rights (1948) United Nations, New York. Available at: http://www.un.org/Overview/rights.html

United Nations (1999) United Nations Treaty Collection: Treaty Reference Guide. Available at: http://untreaty.un.org/English/guide.asp

United Nations Committee on the Rights of the Child (2006) Fortieth session. Consideration of reports submitted by States Parties under Article 44 of the Convention. Concluding Observations: Australia. CRC/C/15/Add.268. Available at: http://www.ohchr.org/english/bodies/crc/comments.htm

United Nations Committee on Economic, Social and Cultural Rights (1994) General Comment No.5 on Persons with Disabilities. Available at: http://www.ohchr.org/english/bodies/cescr/comments.htm

United Nations Convention on the Rights of Persons with Disabilities (2006). Available at: http://www.un.org/disabilities/convention/


Appendix 1: Recommendations from ‘Moving Forward’ – Sterilisation and Reproductive Health of Women and Girls with Disabilities (2001)(ISBN: 0 9585269 5 8)

1. Reconciliation

1.1. The Federal Government act immediately to redress the human rights violations against women and girls with disabilities who have been sterilised without their consent. In the process of reconciliation, financial compensation and an official apology for discrimination should be provided.

1.2. The Commonwealth Department of Health & Aged Care, through the National Women’s Health Program, act immediately to establish support and counselling for survivors of forced sterilisation. The establishment of any support and counselling services must be done in consultation with women with disabilities.

2. Co-ordinated Approach to Legislative and Policy Development

2.1. The Federal Attorney General’s Department co-ordinate the establishment of a National Working Party to develop and implement a five year Action Plan based on the recommendations of this report, and the recommendations of the report by Brady, Briton & Grover (2001) ‘The Sterilisation of Girls and Young Women in Australia – Issues & Progress’. The National Working Party should encompass membership which demonstrates a whole of government approach. Membership should include representatives from:

  • Women With Disabilities Australia (WWDA);
  • National Women’s Justice Coalition (NWJC);
  • Commonwealth Office of the Status of Women (OSW);
  • FPA Health NSW;
  • Aboriginal & Torres Strait Islander Commission (ATSIC);
  • National Ethnic Disability Alliance (NEDA);
  • Federal Attorney General’s Department;
  • Human Rights and Equal Opportunity Commission (HREOC);
  • Commonwealth Department of Health & Aged Care;
  • Commonwealth Department of Family & Community Services (FACS);
  • Commonwealth Department of Education, Training & Youth Affairs (DETYA)
  • Australian Medical Association (AMA)
  • Royal College of Obstetricians & Gynaecologists;
  • Royal Australian College of General Practice (RACGP);
  • Law Society of Australia (or a nominated legal representative);
  • National Reproductive Rights for Women with Disabilities Network (as described in this report)

2.2. This National Working party should be funded and appropriately resourced.

2.3. The National Working Party review all current protocols and legal avenues dealing with the issue of sterilisation and recommend uniform measures which can be enacted by all States and Territories. Those recommendations can then be enacted through Commonwealth/State funding agreements such as: the Commonwealth/State Medicare Agreement and/or the Commonwealth/State Disability Agreement.

2.4. Any reforms must be based on the premise that the forced sterilisation of girls and women with disabilities is a human rights issue. Reforms must reflect that any sterilisation carried out without the informed consent of a person is a forced sterilisation and that applications to sterilise must be seen as procedures done to women with disabilities not procedures done for them.

2.5. Any reforms must address the issue of forced sterilisation for all women and girls with disabilities, including those with psychiatric, physical, cognitive, and sensory disabilities.

2.6. The Federal Government establish mechanisms to ensure that any action or progress on the issue of sterilisation of girls and women with disabilities undertaken by Government is reported back to Women With Disabilities Australia (WWDA).

3. Information, Support and Service Models

3.1. The Commonwealth Department of Health and Aged Care fund a fulltime Project Officer position for Women With Disabilities Australia (WWDA) for a period of three years to:

  • research and develop accessible information resources for girls and women with disabilities regarding sterilisation and the implications of such procedures;
  • research and develop best practice service models to support women and girls with disabilities who have undergone forced sterilisation, as well as those seeking information and support regarding the decision to undergo sterilisation and broader reproductive health issues.

3.2. The Commonwealth Department of Health and Aged Care fund FPA Health (NSW) to establish and operate the National Reproductive Rights for Women with Disabilities Network (as described in this report). The Network would consist of women with disabilities, service providers, policy makers and other interested individuals to progress reproductive rights issues for women with disabilities. This would include but not be limited to addressing the issue of forced sterilisation of women with disabilities.

4. Consent

4.1. The Federal Government act immediately to ban all sterilisations of girls under the age of 18 years, unless the 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.

4.2. The Federal Attorney General’s Department undertake an investigation into the issue of ‘consent’ as it applies to sterilisation and other reproductive health issues for women and girls with disabilities of all ages.

4.3. The Federal Attorney General’s Department undertake an immediate review of procedures and processes currently in place for sterilisations occurring to girls and women with disabilities who are deemed ‘incapable of giving informed consent’. Any review must address the following issues:

  • Who should determine that a person is incapable of giving informed consent; and,
  • What processes and mechanisms should be used to determine that a person is incapable of giving informed consent.

4.4. The Federal Attorney General’s Department develop and establish an independent mechanism to establish whether informed consent can or cannot be given.

5. Reproductive Health Care

5.1. The Commonwealth Department of Health and Aged Care fund a national project on reproductive health care for girls and women with disabilities which:

  • addresses the process, concerns, and issues identified in this report, along with the incidence of forced sterilisation for ALL women with disabilities, including those with psychiatric, cognitive, sensory and physical disabilities;
  • researches the long term physical and mental health and social effects of sterilisation;
  • researches the practice of menstrual suppression of girls and women with disabilities, including those in group homes and other forms of institutional care. Research into menstrual suppression practices must include:
    a) an investigation into the use of DepoProvera and other injectable contraceptives; the contraceptive pill; and other forms of contraception.
    b) an investigation into the use of contraception as a form of social control of girls and women with disabilities.
    c) an investigation into the process of Substitute Decision Making.
    d) an investigation into the long term physical and mental health and social effects of menstrual suppression practices.

5.2. The Australian Division of General Practice fund a national project to educate and inform general practitioners on:

  • their obligations under the Disability Discrimination Act (DDA) 1992;
  • sexual health issues (contraception, sexual health, fertility management, pregnancy, menopause, breast and cervical cancer screening) for women with disabilities;
  • sterilisation as a human rights issue;
  • options for menstrual management;
  • services that are available for general practitioners to refer women and girls with disabilities to.

5.3. The Australian Medical Association (AMA) in conjunction with the Royal College of Obstetricians & Gynaecologists undertake responsibility for the development of an Information Package on the legal, medical, and social implications of forced sterilisation and menstrual suppression practices.

5.4. The Commonwealth Department of Health and Aged Care fund the development of national sexual health protocols for women with disabilities which incorporate options for menstrual management and contraception.

6. Data Collection

6.1. The Australian Institute of Health & Welfare (AIHW) be responsible for the co-ordination, collation and analysis of reliable statistics on forced sterilisation, including those currently being performed and those that have been performed in the past. Any data collection system developed must incorporate provision for an independent means of checking the database for accuracy and comprehensiveness of records.

6.2. The Commonwealth Department for Health & Aged Care examine how data on sterilisation of women with disabilities is currently collected, and investigate the possibility of developing coding information which provides more accurate and reliable statistics on sterilisations of women and girls with disabilities, including those with psychiatric, cognitive, sensory and physical disabilities.

7. Education

7.1. The Federal Government, through the Department of Education, Training and Youth Affairs (DETYA) develop national protocols for health education curriculum (beginning at primary school level) which incorporate models of diversity that portray positive images of people with disabilities as parents and as sexual beings.

7.2. The Commonwealth Department of Education, Training and Youth Affairs (DETYA) fund a fulltime Project Officer position for Women With Disabilities Australia (WWDA) for a period of two years to:

  • conduct a national project which educates and informs women with disabilities of their reproductive health rights, including their right to sexuality and their right to parent.