'The Reproductive Rights of Women with Disabilities'

This paper was written by Natalie Tomas in 2004. The paper outlines the legislative framework in Victoria and the role of the Office of the Public Advocate within that framework with regard to the reproductive rights of women with disabilities. It is particularly concerned with the non-therapeutic sterilisation of young women with intellectual disabilities. Copyright 2004.

Introduction: citizenship, women with disabilities and reproductive rights

A fundamental principle of feminism has always been a woman's right to control her own fertility, to choose whether to have children or not. For some feminists early last century, motherhood was connected to a woman's status as a citizen. It was tied in with women's rights and responsibilities, including the right to vote and to receive child endowment from the State. [1] For certain women, however, these concepts of bodily integrity and freedom of choice have always been regarded as inherently problematic because they have an intellectual disability. It has only been in the last decade or so that we have even had a legislative framework within which to regulate the process by which young women with intellectual disabilities, often premenstrual or teenagers, are sterilised for non-therapeutic reasons.

This paper will discuss the legislative framework in Victoria and the Office of the Public Advocate's role within that framework with regards to the issue of the sterilisation of women with intellectual disabilities for non-therapeutic purposes.

The role of the Office of the Public Advocate

The Office of the Public Advocate (OPA) was established under the Victorian Guardianship & Administration Act (1986) and is an independent statutory office, working to promote the interests, rights and dignity of Victorians with a disability. OPA provides advocacy, guardianship and investigative services, particularly in cases of abuse, neglect or exploitation of people with some form of cognitive disability, such as intellectual disability, mental illness, dementia, acquired brain injury or other disability that results in a lack of cognitive capacity.

Thus acting as advocate for women with disabilities in matters concerning their reproductive capacities is in line with OPA's mission and its statutory responsibilities.

Sterilisation of Young Women with Disabilities

Although the sterilisation of people with intellectual disabilities (both minors and adults) in theory could apply equally to men and women, in practice sterilisation and gender are linked. All the sterilisation cases heard before the family court or state guardianship tribunals as at 2001 have involved young women or girls with intellectual disabilities.[2] In the overwhelming majority of cases involving people with cognitive disabilities over 18 years of age, this is also true. (In the 2002/2003 financial year OPA was involved in one sterilisation case involving an adult male with an intellectual disability who had decided that he did not wish to have children. OPA became involved to make sure that he understood fully that the procedure would render him permanently infertile.)

The December 1997 report by Susan Brady and Sonia Grover entitled: The Sterilisation of Girls and Young Women in Australia, which was commissioned by the Human Rights and Equal Opportunity Commission, suggested that:

Courts and tribunals have authorised a total of 17 sterilisations of girls since Marion's Case [in 1992]. Meanwhile, data collated by the Health Insurance Commission shows that at least 1045 girls have been sterilised over this same period, and this figure counts only those 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. Without any doubt most of these girls were sterilised unlawfully. [3]

This statement has been a source of contention and debate, with the Commonwealth Government hotly disputing the number of illegal sterilisations. A Senate inquiry, using a different set of data, put the number of sterilisations at a mere handful. [4] The Federal Minister for Health at the time of the release of the 1997 report, Michael Wooldridge, said that the number of sterilisations that were unlawful was closer to 200! In a speech in 1998, Elizabeth Hastings, the former (and first) Disability Discrimination Commissioner, responded:

A world in which a government Minister cannot be bothered to investigate possible illegal medical assault on nearly 200 of its citizens (this is the number Mr. Wooldridge estimates could be illegal assaults), in which those with no authority feel free to make decisions which are blatantly against the law and to carry out serious and irreversible procedures on those with little or no capacity to give or withhold consent, is a world in which people with disabilities can have no certainty or confidence about their human being [sic]or their future. [5]

In other words, the issue is not how many young women with intellectual disabilities were sterilised unlawfully, but rather how can one allow such a human rights abuse of even one young woman with a disability to go unchecked. As Hastings noted in her speech, some of these young women were only nine years old.

The Legislative Framework in Victoria

The Guardianship & Administration Act (1986) is an enabling Act designed to promote the rights of the people with disabilities that fall within its jurisdiction. The Victorian Civil and Administrative Tribunal - Guardianship List (the Tribunal) is bound by the principles of section 4(2) of the Act which states:

It is the intention of Parliament that the provisions of this Act be interpreted and that every function, power, authority, discretion, jurisdiction and duty conferred or imposed by this Act is to be exercised or performed so that
(a) the means which is the least restrictive of a person's freedom of decision and action as is possible in the circumstances is adopted; and
(b) the best interests of a person with disability are promoted; and
(c) the wishes of a person with a disability are wherever possible given effect to.

In the normal course of events, parents are able to give consent to medical procedures in relation to their minor children (except where these children can demonstrate capacity to give informed consent - the Gillick decision). Cases involving sterilisation or termination of pregnancy of minors who have a cognitive incapacity, however, are heard in the Family Court of Australia. In South Australia & New South Wales the Guardianship tribunals can also hear cases in relation to minors.

Where someone is an adult and has a cognitive incapacity that prevents them from giving informed consent, then usually their next of kin (the 'person responsible' under the Guardianship and Administration Act), or someone with a valid medical enduring power of attorney or a guardian appointed under the Act for the health care for that person could give consent.

However, this is not the case where 'special medical procedures' are involved. Section 3 of the Guardianship & Administration Act states that a special procedure is:

Any procedure that is intended, or is reasonably likely, to have the effect of rendering permanently infertile the person on whom it is carried out; or Termination of pregnancy.

(Transplantation of an organ or tissue and medical research are also covered under this section of the Guardianship and Administration Act but do not concern us here).

In cases involving adults the matter is heard by the Victorian Civil and Administrative Tribunal -Guardianship List ('the Tribunal').

Unless the procedure is an emergency and involves life saving treatment, therapeutic sterilisations (such as for the treatment of a gynaecological disease or testicular cancer) involving people with cognitive disabilities DO require prior approval. The main reason for this is that sterilisations that are said to be for therapeutic reasons are still considered to be special procedures under the Act. Non-therapeutic reasons include such reasons as behavioural difficulties, as in the case of menstrual management; or to avoid the consequences of sexual activity or sexual abuse, namely the risk of pregnancy.

In 1993 the Family Law Council recommended that sterilisation should NOT be used for eugenic purposes, as a contraceptive, to mask or avoid the consequences of sexual activity or sexual abuse, namely pregnancy, or prior to the onset of menstruation to avoid the possibility of any future problems that might occur with menstrual management. [6]

Office of the Public Advocate: policy and procedures

OPA becomes involved as an advocate for the person with the disability (child or adult) and, in line with its mission; its focus is always on an outcome that is in the best interests of that person. In relation to matters before the Family Court of Australia, OPA has developed a protocol with the Court to ensure that all cases are referred to the Office for advocacy. Cases appearing before the Tribunal are referred to OPA for investigation under Schedule 1 section 35 (1) of the Victorian Civil and Administrative Tribunal Act (1998), where, as part of that process, the Office undertakes best interest advocacy on behalf of the person with the disability.

More specifically, OPA's Policy on Special Procedures states that:

OPA's general approach requires that the least restrictive option needs to be considered on a case by case basis for the person with a disability. Most importantly, a person with a disability has the same rights as other people and the proposed procedure should never be solely for the convenience of carers or others. A useful question to ask is whether the procedure would be recommended in the case of a person of the same age without a disability. Is the reason for the proposed intervention therapeutic or non-therapeutic? Would the proposed medical procedure be recommended for any person presenting with the same or similar problems or issues? [7]

OPA policy goes on to say specifically in relation to a special procedure that would cause permanent infertility that:

Non-therapeutic reasons should only be considered in extreme cases where the following options have been systematically trialed and documented:

Difficulties need to be clearly articulated and demonstrated, over a significant period of time, to establish conclusively that the presenting problem is a significant impairment to the woman's quality of life........intervention should never be solely for the convenience of carers or others. It must be clearly established that the proposed medical intervention is in the best interests of the woman. [8]

Further, OPA's policy cites the former Guardianship and Administration Board in a case of 1987 [re: P] involving a proposed sterilisation where the Board ruled that prior to an order being made:

less restrictive options must be thoroughly investigated. In the case of P this means acknowledging firstly, her right to adequate information and maximum opportunity to make her own decisions. Secondly, it involves an adequate exploration of P's potential to make her own decisions through an appropriate form of human relations, health and sexual counselling, and thirdly, her right to professional care and advice which would explore all possible options before choosing a more restrictive one. [9]

How often does this issue come up for the Office of the Public Advocate? The Client Management Information System contains 60 entries since 1992 involving sterilisation. Between July 1, 2002 and June 30, 2003, 28 Telephone Advice Service calls related to special procedures (0.33% of total), and five related to the sterilisation of a minor (0.06% of total). This is a small but significant part of the Office's work.

The Media Debate: Whose Right to Choose?

The sterilisation of women and men with disabilities for non-therapeutic reasons was canvassed in a Four Corners programme (ABC-TV) on Monday 16 June 2003 entitled: Walk in Our Shoes [10]. Broadly speaking, the programme presented two opposing views on this issue. Four sets of parents who had had or wished their children (three young women and one young man) to be sterilised for non- therapeutic reasons (menstrual management and the fear that their children could become parents were the main reasons) were interviewed. No parent who did NOT favour sterilisation was interviewed for the programme even though at least one parent was known to the makers of the programme and was keen to be interviewed. Two sets of parents had had their children sterilised, one couple's request in relation to their twelve year old daughter had been denied, while the mother of young man in his 20s with an intellectual disabilities who had a wife and child, thought he should be sterilised to prevent him having more children. The parents interviewed expressed frustration at having to go through a legal process in order to have their child sterilised, particularly if they had to go through the Family Court process with its attendant costs. They felt that parents alone should make the decision.

The views of women who had been sterilised were given via two young women who were sterilised as teenagers by their parents without their consent. One woman had cerebral palsy but did not have an intellectual disability and the other woman did. Disability rights advocates and legal and medical specialists in this area were also interviewed.

Several people interviewed for the programme, including the Victorian Public Advocate, Julian Gardner, commented on the fact that sterilisations were being carried out unlawfully:

JULIAN GARDNER: The law provides for a system of approving these medical procedures for sterilisation and the law is being flouted. And to that extent, it's not working.
JANINE COHEN [interviewer Four Corners]: Why isn't it working?
JULIAN GARDNER: Because people are finding ways to have sterilisations carried out outside the law.
JANINE COHEN: Has there ever been a doctor convicted?
JULIAN GARDNER: I'm not aware of a case.

FRANCIS VICARY, QUEENSLANDERS WITH DISABILITY NETWORK: I think if we can say there's illegal operations happening, what are we doing about them? Why aren't we prosecuting? I mean, if they are illegal, then let's do something about them. It's only when you prosecute that people change their attitude and stop doing things that are illegal.
JANINE COHEN: Why do you think no-one has ever been charged?
FRANCIS VICARY: Because it's people with disabilities. They're less valued.[11]

The women who had been sterilised and their advocates spoke of their outrage at the violation of their human rights, at their lack of choice and at their inability to experience full womanhood.

FRANCIS VICARY: It's a power thing. I really don't like the idea. I object wholeheartedly to anyone else making choices about a woman, about a woman's body, because I think even women with disabilities have the ability to know what's going on in their body.
JANINE COHEN: Why should a woman with a disability not be sterilised?
ANNETTE KALKMAN: Because it...it takes their choice away.
JANINE COHEN: It takes their choice away?
ANNETTE KALKMAN: Yes.
JANINE COHEN: What choice is that?
ANNETTE KALKMAN: Having kids.
JANINE COHEN: Looking back now, how does that make you feel, the fact you've had a hysterectomy?
ANNETTE KALKMAN: Angry.
JANINE COHEN: Why?
ANNETTE KALKMAN: Because I want to experience a period.
LEANNE DOWSE: We know that there are huge emotional consequences. People feel violated, they feel that they're not a real woman. These are the things that people have told us when they've spoken about their experiences. They feel very alienated from other women. They have difficulty establishing relationships with men. So, you know, the consequences are enormous. [12]

Yet the programme ended not with the powerful, outraged voices of the women with disabilities who had been forcibly (and unlawfully) sterilised, but with the mother from whose words the programme took its name. The voices of the women with disabilities had thus again been muted and their pain and outrage was again given less value.

Conclusions

The reproductive rights of women with disabilities to bodily integrity and to control of fertility have often been marginalised, ignored or trampled upon. The legislative framework within which OPA works and the procedures and policies that I have outlined here do go some way towards addressing this issue. But it is clear that when it comes to considering and accepting women with cognitive disabilities as full citizens with the same reproductive rights as other Australian women, we have a long way to go still.

Resources

Office of the Public Advocate. www.publicadvocate.vic.gov.au

This website contains all OPA publications and information about its services & programs. This includes information regarding special procedures applications (sterilisations) before the Family Court of Australia. It also has some useful links.

Women with Disabilities Australia (WWDA). www.wwda.org.au
This website contains all the reports relating to women with disabilities referred to here and many, many more!!

Endnotes

[1] Lake, Marilyn. Getting Equal: The History of Australian Feminism (Allen & Unwin, 1999).

[2] Brady, Susan, John Briton, and Sonia Grover, The Sterilisation of Girls and Young Women in Australia: Issues and Progress (Human Rights and Equal Opportunity Commission, 2001), p.3.

[3] 1997 summary accessed at www.wwda.org.au 22 April 2003.

[4] Dowse, Leanne and Carolyn Frohmader. Moving Forward: Sterilisation and Reproductive Health of Women and Girls with Disabilities (Women with Disabilities Australia, 2001), p.73.

[5] Brady, Briton and Grover, p.20.

[6] Family Law Council, Sterilisation and Other Medical Procedures on Children: A Report to the Attorney-General (Australian Government Publishing Service, 1994), Recommendation 3, pp. v-vi & para. 4.5.3.

[7] OPA Policy on Special Procedures 10.2 (2003).

[8] OPA Policy on Special Procedures, 10.7. (2003).

[9] Guardianship and Administration Board, in the matter of P (unreported) 19 November 1987 as cited in OPA Policy on Special Procedures 10.2. (2003).

[10] "Walk in Our Shoes"..... Four Corners (ABC TV). ABC 2003 transcript reproduced with permission of Four Corners © ABC-TV 2003 at www.wwda.org.au , accessed on 24 October 2003.

[11] "Walk in Our Shoes"..... Four Corners (ABC TV). ABC 2003 transcript reproduced with permission of Four Corners © ABC-TV 2003 at www.wwda.org.au , accessed on 24 October 2003.

[12] "Walk in Our Shoes"..... Four Corners (ABC TV). ABC 2003 transcript reproduced with permission of Four Corners © ABC-TV 2003 at www.wwda.org.au , accessed on 24 October 2003.
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