WWDA Presentation to the First AustralianTribunal on Women’s Human Rights
The First Australian Tribunal on Women’s Human Rights was held by the Women’s Rights Action Network of Australia, in Melbourne on May 21 1999. Women With Disabilities Australia (WWDA) was represented by Ms Vicki Toovey, who gave a presentation on behalf of WWDA. That presentation is reproduced here. Copyright WWDA 1999.
In our community, many women are subject to violations of their human rights – women who work in their homes for $1.30 per hour; young women who are abused in their families; women and girls with disabilities who are illegally sterilised; lesbian couples who are denied access to services and legal protections or benefits heterosexual couples take for granted.
These issues, and other human rights abuses were highlighted in the Platform for Action which arose out of the 1995 United Nations World Conference for Women held in Beijing. Australia was a signatory to this Platform for Action, which identified critical areas of concern for women’s human rights which Governments needed to prioritise.
On May 21 1999, the Women’s Rights Action Network held the First Australian Tribunal on Women’s Human Rights. The Women’s Rights Action Network Australia (WRANA) is a national feminist human rights organisation comprising various non-governmental human rights and women’s groups, which was established in June 1998 to foster effective partnerships between women’s and human rights sectors.
At the Tribunal, 12 women living in Australia testified about their experiences, with testimonies being presented on the following issues: the sterilisation of women and girls with disabilities; Outworkers; Prisons; Income support and older women; the ramifications of sexual abuse in the family for young women; discrimination in the provision of housing; the decline of national machineries for indigenous Australians; issues raised by members of the Stolen Generation; discrimination against lesbian couples; Australia’s refugee determination process; and issues of domestic violence for women living in a rural area; and issues of domestic violence for women sponsored into Australia for marriage.
At the conclusion of the day a panel of experts in the human rights field, made recommendations to the Government and the community on the issues they had heard during the day. These recommendations will be included in a more extensive report which will be released in September 1999.
Women With Disabilities Australia (WWDA) was fortunate to be represented at the First Australian Tribunal on Women’s Human Rights. The President of WWDA, Ms Vicki Toovey, presented case studies on the sterilisation of women and girls with disabilities. Vicki’s presentation has been reproduced here.
WRANA Tribunal Case Study – Sterilisation of Women With Disabilities – by Vicki Toovey, Women With Disabilities Australia (WWDA)
“First of all I would like to make it clear that on this occasion I am speaking on behalf of other women. Women with Disabilities Australia is a feminist organisation which believes that women should be able to tell their own stories. We were concerned that the issues for women with disabilities may not be given a voice at this Tribunal. However in this particular matter it is very hard for women to speak up. There is the issue of confidentiality and privacy for many women and also that women may not be aware of the nature of the procedure which has occurred. There is enormous grief associated with the loss they have undergone. So at this time I am speaking on behalf of women with disabilities to give voice to their stories. I was able to interview two women who were willing to share their stories with me because they felt that the issue was so important and needed to be heard more widely and a greater understanding developed of what this issue means for women with disabilities. This is a privilege which I do not undertake lightly.
As feminists we have fought for the right to have information about our health, an understanding of our bodies and the right to make informed choices. The issue of sterilisation of women with disabilities goes to the core of all these matters and goes a step further – it adds the factor of discrimination.
In 1997 the then Federal Disability Discrimination Commissioner Ms Elizabeth Hastings released a report titled “The Sterilisation of girls and young women in Australia: A legal, medical and social context” by Susan M Brady and Dr Sonia Grover. In September 1998 Ms Hastings addressed the Annual General Meeting of Women with Disabilities Australia in Melbourne. We had asked if she would highlight issues that she believed that we should take up as the only organisation which specifically advocates on behalf of women with disabilities and provides leadership in this area. Elizabeth spoke passionately about the need for continued awareness of this issue of sterilisation of young women and girls. I quote extensively from this report as follows:
“The legal framework regulating sterilisation of children in Australia was set out by the High Court in Marion’s Case in 1992. It sought to ensure heightened accountability in decision making in an area where children are at significant risk of grave abuse of their fundamental human right to bodily integrity.” This meant that lawful sterilisation can only be carried out on any child with the specific authority of a court or tribunal such as the Family Court or a Guardianship Board. By “sterilisation” we mean a surgical intervention which results either directly or indirectly in the termination of an individual’s capacity to reproduce.” “Some sterilisation procedures (for example hysterectomy but not tubal ligation) eliminate menstruation..”
Sterilisation of women with disabilities is usually carried out “in the main as a response not to a clinical medical need but to disability. It reflects persistent negative attitudes towards fertility, menstruation and menstrual management in young women with an intellectual disability.”
The reasons given for proceeding with sterilisation are often with regard to management of menstruation, behaviour that may be thought to be associated with pre-menstrual tension, heavy bleeding and cramps, difficult social behaviour or emotional reactions to bleeding, alleviation of personal care tasks both for the young woman and her parents and carers, preventing pregnancy, reducing the need for education and information about fertility etc.
The issue of sterilisation brings into focus both the notions of consent and of discrimination. When can it be said that a woman has freely and in an informed way given her consent to a procedure if the woman’s self esteem is so low that she does “not believe that it would be right to bring another person into the world like me”, when her life is one of constant discrimination, denial of her worth and a limited view of her own potential.
Case Study 1
The first case study which I wish to present brings in both these notions and highlights the issue of when is choice really a choice. Maria (not her real name) is now a woman in her early 40s – she has a physical disability which in recent years has meant that she has used an electric wheelchair for mobility but for many years she has used a walking stick and a wheelchair and used such mobility aids to help her conserve energy and enable her to continue to live a full life. She has made informed choices about her use of mobility aids based on an understanding of her body and an understanding of what she wants to do and needs to do on a daily basis. Sometimes you want to conserve energy during the day to enable you to undertake a social activity in the evening for instance. Maria has made these choices and has managed her own care – that is she lives independently and has support for those areas of her life in which she feels she needs support. She is in part-time employment and is a passionate, thoughtful and intelligent advocate for the rights of people with a disability.
When you listen to Maria speak about her choices about her life as a woman of reproductive age you are confronted with a totally different picture. Her choices and experience in this area are at odds with the picture of her which I have drawn above.
In discussing the story of her reproductive choices Maria talks about “What was done for me and what was not done for me” and that “people did not protect me from myself”.
She says about how 25 years ago society’s attitudes to people with disabilities were even more discriminatory than they are now and that the supports for independent living, access to education and employment were severely restricted. It was not until Maria was in her mid to late 30s that she embarked on a period of self discovery.
“I started to look at my values as a person with a disability. By 37 I started questioning if I wanted children. I thought that I didn’t want children, I didn’t want another me. Why would I want to bring some-one else into the world that possibly had my attributes and in particular my attributes as a person with a disability. I protected my children from the cruel world by not having them. As I became more disability aware and valued myself as opposed to devaluing myself I wanted to think about having children.
I grew up in a normal household as a member of a family in a country town and participated in normal schooling activities. Then I was moved to the city and went to a Special School which was part of a specific disability provider service with ward style accommodation where I lived in and was receiving physiotherapy and treatment. It was like both a hospital and a home. From the age of 14 to 15 I had a great deal of physiotherapy treatment which included being in plasters to assist me to keep walking.
Before I was married I was sterilised at the age of 17 and half years.
The people who consented to this procedure were my mother and my fiance. My fiance was over 18. I didn’t object as such because why would I want to have children. I believed that people with disabilities were worthless and that they were a burden on people and society. I felt that if I produced a child with a disability I would be producing a “bad person”.
At the home I had taken on the very devalued attitudes about people with disabilities which were predominant. I had learned that children with disabilities are incompetent. Children without disabilities are competent and this competency is constantly reinforced whereas for children with disabilities it is incompetence that is constantly reinforced – you are not able to do this, you can’t do that. Later I came to understand this as “internalised oppression”. I was a very scared and angry person and totally denied my self as a person who was worthwhile.
I understood that I was having a tubal ligation. I can remember after the operation the doctor saying something to me – what he said was “I made very sure you wouldn’t get pregnant”. After this operation I stayed on the pill for menstrual management.
After my experience in the hospital/home I did not associate with disability issues for a very long time. I just didn’t want to have anything to do with it, it was something I just wanted to run away from and not be a part of.
My emotional self fragility led me to look for how I could help myself and I spent many years in therapy. I realised that I was dealing with many losses. Part of this dealing with loss was the issue of having children or not. I felt that I didn’t want children because I didn’t want another me.”
Maria started to question whether was she was a carrier of the disability.
She made an appointment to see a genetic counsellor at a major hospital – during the time between making the appointment and actually seeing the counsellor she continued her therapy. This was a big part of a period of self acceptance and greater self awareness particularly around disability issues. The genetic counsellor told her that there was no reason for her to have children with the same disability. He said he would access her medical records and find out for her what sort of tubal ligation had been done to explore the possibility of reversal of the procedure. What he found was quite different She was told it was not a tubal ligation that she had had but a different procedure which was not reversible.
On understanding this Maria realised that she had had even further denial of choice – that the surgeon who had done the procedure when she was not yet 18 had further limited her choice by using a procedure which as he had said to her would “make sure she didn’t get pregnant” and had given her no chance of reversal of this.
Maria said to me “what if an able-bodied woman of 17 had asked for this procedure to be done, even at that time, some 20 years ago, what would the reaction have been – they would have said no, this is not necessary and offered a range of choices.”
Case Study 2
Sterilisation procedures are performed most commonly on girls and young women with intellectual disabilities.
This is the story of a woman with what would be considered to be a mild to moderate intellectual disability. She is currently 37 years of age. She was sterilised at the age of 18. Her tubes were cut and tied in a procedure which she believes is not reversible. The procedure was done without her consent. She said that she was taken from the special accommodation in which she was living and just told she had to have an operation and that she did not know what it was about.
She believes that this was done because it was thought that she would be unable to look after children if she had any. She now claims to regularly provide care for her 4 nieces and 3 nephews. She says she was devastated by what happened and she has an enormous amount of grief about not having children. This issue is constantly a part of her life and she confronts it all the time such as when she sees other people with children as she goes about daily activities such as shopping.
She has a partner with whom she lives. They both live independently in the community and he has a full-time job while she receives a pension and does voluntary work with a disability advocacy organisation. She and her partner are talking about getting married and looking at the possibility of adoption of children.
The procedure which she underwent caused her to “suffer infertility, anxiety and nervous shock after the operation which was performed in 1980 when she was resident in a special accommodation unit.” The woman sued the hospital where the operation was performed claiming damages for negligence. In the case it was “alleged that she was taken to the hospital under duress and that the operation was performed without her lawful and /or informed consent. She claimed that the hospital failed to ensure that she understood the nature and consequences of the operation, including that it was irreversible and that consent was provided by some one who was not lawfully empowered to give it.”
In 1994 she was awarded a settlement of $90,000 from the hospital where the operation was performed in 1980.
The Bardy & Grover Report provides some very disturbing figures regarding the number of sterilisations which have been undertaken since the legal framework which was set in place in 1992.
Further work and research needs to be done in this area to follow up on the issues raised in this report. I quote from the summary as follows:
- sterilisation may lead to a cycle of neglect and increase the likelihood that sexual abuse will go undetected.
- there is no data to confirm that pregnancy is a significant risk in this population
- there are no figures to substantiate fear of pregnancy in this population
- the socio-political nature of issues relating to the sterilisation of young women with intellectual disabilities is illustrated
- heightened accountability in decision making about the child’s best interests requires a coordinated, experienced and multi-disciplinary approach.
- serious attention should be given to the array of services and support which may significantly enhance both the child’s quality of life and that of her parents, sibling and carers
- sterilisation is not a solution for the scarcity of family support and resources.
These two stories highlight the complexities of the notions of consent, choice and discrimination. Women with disabilities have a right to bodily integrity, to make informed choices about their health and reproductive activity. The issue of sterilisation is seen by many as violence against women. It reflects society’s continuing inability to deal with the issue of sexuality and people with disabilities. It also reflects the need for support and care for people with disabilities and those who care for them. Support should be provided to enable independence in daily activities, to enable the management of menstruation, education to protect against unwanted sexual advances and both proper support and respite care for parents and carers.
At the centre of all of these issues is the continued need for action and awareness of people with disabilities in our community and our rights to full citizenship and participation in our society without discrimination.”