WWDA Submission to the Commonwealth and State/Territory Governments regarding Non-Therapeutic Sterilisation of Minors with a Decision-Making Disability


This paper is a Submission from Women With Disabilities Australia (WWDA) in response to the Issues Paper developed and publicly released in 2004 by the Australian Government’s Standing Committee of Attorney’s-General (SCAG) Working Group on the Non-Therapeutic Sterilisation of Minors with a Decision-Making Disability. This Submission was prepared by: Women with Disabilities Australia (WWDA) in association with The Disability Studies and Research Institute (DSaRI) and Associate Professor Lee Ann Basser, La Trobe Law, La Trobe University Melbourne. Copyright Women With Disabilities Australia (WWDA) May 2004.


Background

Women With Disabilities Australia (WWDA), the national peak organisation for women with disabilities identified the need, through its membership, to address the issue of sterilisation of women and girls with disabilities. As a national systemic advocacy organisation, WWDA has worked over the past several years to ensure that women with disabilities, many of whose lives have been touched by sterilisation, are rightfully represented in debates on the issue.

In 2001 WWDA undertook a National Project on the Sterilisation and Reproductive Health of Women and Girls with Disabilities. This project aimed to ensure that the voices of women with disabilities be heard, as well as provide an opportunity for participation in legislative, policy and/or program debate around the issue of sterilisation. The critically acclaimed Report of the Project, entitled “Moving Forward”: Sterilisation and Reproductive Health of Women and Girls with Disabilities, was published by WWDA in late 2001. This Report reviews international and national developments in the field, and integrates 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.

Since the release of ‘Moving Forward’, WWDA has continued to work to have the issue progressed, particularly through its contact with State and Federal Attorneys General. It was with dismay that WWDA learned from the Federal Attorney General in August last year that whilst the issue was to be put on the agenda, the work would be restricted to the development of uniform national legislation around sterilisation of minors with a decision-making disability. WWDA has clearly demonstrated that the issue of sterilisation is much broader than this. On the basis of our research, informed by women who have been sterilised, such procedures result in life long adverse physical and psychological consequences. The Government’s current 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.

In this context, it is important to re-iterate WWDA’s position, clearly stated in our 2001 report ‘Moving Forward’, that the correct and preferred course of action be that:

“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” (Dowse and Frohmader 2001:5)


2. WWDA’s Position

WWDA does not support the Government’s current proposal to develop a nationally consistent approach to the authorisation procedures required for the lawful sterilisation of minors with a decision-making disability.

WWDA asserts that 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.

WWDA stresses its view that sterilisation can be justified only in circumstances where it is necessary to save life or preserve the health of the individual.

WWDA strongly recommends that the Federal Government develop universal legislation which prohibits sterilisation of children except in those circumstances which amount to those that are 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. If adopted by all States and the Commonwealth, jurisdictional issues raised in the current Issues Paper can be resolved.


3. Key Issues

3.1. Inconsistency with Human Rights Principles

The Issues Paper states that the main aim of the proposed legislation is to protect the human rights of people with disabilities and that people with decision-making disability have the same human rights as all other people. The Bill being proposed however, patently infringes the human rights of those it seeks to protect. The principles upon which it is grounded undermine the right to bodily integrity, the right to bear children and the right to individual value and autonomy.

3.2. Failure to Apply Human Rights Principles

The proposed Bill deals with those in our community who are very vulnerable. In applying human rights principles the starting point should be whether others in the community would subject to such a procedure. There are no instances where authorisations to sterilise have been sought for minors without decision-making disabilities in the absence of a threat to life or health. If as a society, we would not subject those without disabilities to such procedures, why would we do it to the most vulnerable people? Clearly then, the “But For” test can be the only ‘test’ in any legal consideration of the issue.

3.3. Pre-emptive Assumptions of the Proposed Bill

The proposed Bill 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. Our evidence indicates that it would be very rare cases where sterilisation of any minor could be justified.

 

    • sterilisation of children is an issue for parents. Evidence suggests that when parents 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. The focus of the proposed Bill 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. The proposed Bill aims to make the process of authorisation less difficult and less expensive. WWDA is gravely concerned with such a focus, as it has the very real potential to make authorisation to sterilise easier rather than more difficult.

3.4. Lack of clear definitions and consistent language

In considering such a critical issue it is important to be clear about what is actually being discussed. The Issues Paper contains a variety of terminology including ‘sterilisation’, ‘non-therapeutic sterilisation’, ‘non-therapeutic surgical sterilisation’, ‘special treatment’ and ‘special procedures’, with no clear and consistent definitions of these terms, or how they would be operationalised in any discussion about authorisation.

3.5. Failure to consider procedures and their consequences

There is an obvious lack of clarity in the Issues Paper regarding the variety of procedures that potentially result in sterilisation. This has been a noticeable omission in the discussion in Australia to date. While lip service is paid to the principles of ‘least restrictive alternative’ and ‘action of last resort’, in Australia hysterectomy appears the predominant procedure. This is in stark contrast to the international context where tubal ligation appears most commonly used. Clearly there are significant adverse effects associated with all procedures, particularly when it involves the removal of non-diseased reproductive organs before or around the onset of menstruation. The consequences for the minor here are likely to be severe and life-long. There appears to have been little consideration of this in the context of the current Issues Paper which focuses on processes to authorise sterlisation.

3.6. Incapacity Attributed to the Minor

Also evident in the Issues Paper is confusion around the terminology used to refer to the minor as either having an “intellectual disability” or a “decision making disability”. WWDA would favour the use of “decision making disability” since it is likely to be more amenable to operationalisation in a decision making context than a medical diagnosis such as intellectual disability. It is also applicable to minors with other types of impairments including mental health.

However, the use of such terms remains problematic. At issue here is the way in which any label of this kind 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. The abject failure of the Issues Paper to consider issues such as adequate resourcing of support structures and services (which might include sex and protective behaviour education, provision of accessible information, support for non-standard modes of communication and so on) is of major concern. Clearly, these issues must form part of any debate on sterilisation.

3.7. Monitoring Options

The Issues Paper states that authorisation may proceed “as long as they have considered or explored all other options”. This very generalised statement raises a number of questions, including for eg:

  • what options have been considered
  • who has explored the options;
  • what is the timeframe for the process;
  • how is it monitored; and
  • how should the exploration process be evaluated.

3.8. Sanctions

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 sanctions. It is our view, however, that sanctions should not be applied to families.


References

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

Jones, M and Basser Marks, L (2000) “Valuing People through Law: Whatever Happened to Marion?” in M Jones and L A Basser Marks Explorations on Law and Disability in Australia 17(2) Law in Context Special Issue Federation Press.


Appendix 1: Organisational Profiles

Women With Disabilities Australia (WWDA)

Women With Disabilities Australia (WWDA) is the peak organisation for women with all types of disabilities in Australia. It is a federating body of individuals and networks in each State and Territory of Australia and is made up of women with disabilities and associated organisations. 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.

The objectives of Women With Disabilities Australia (WWDA) are:

  • to actively promote the participation of women with disabilities in all aspects of social, economic, political and cultural life;
  • to advocate on issues of concern to women with disabilities in Australia; and
  • to seek to be the national representative organisation for women with disabilities in Australia by: undertaking systemic advocacy; providing policy advice; undertaking research; and providing support, information and education.

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 Women With Disabilities Australia (WWDA) can be found on WWDA’s website at: www.wwda.org.au

Disability Studies and Research Institute (DSaRI)

The Disability Studies and Research Institute (DSaRI) undertakes research into and education about disability issues from a social perspective and promotes public debate associated with the social dimensions of disability. The Institute involves stakeholders from universities, organisations of people with disabilities, the research community, policy and service delivery bodies, industry and the wider community. It aims for a wider understanding and debate about the social processes that disable people.

More information about the Disability Studies and Research Institute (DSaRI) can be found at at: www.dsari.org.au