SANDRA'S* daughter was 11 when she first tried to have her sterilised.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
It might seem a drastic decision, but the Northern Tasmania mother said she was anxious and afraid at the thought of her daughter Mary*, now in her early 20s, having a child of her own.
She still is.
But for Sandra, the major reason for seeking a hysterectomy was Mary's inability to handle her menstrual cycle.
She said Mary's monthly period would see her try to remove and eat used sanitary pads, play with her blood, become more agitated and distressed than usual, strip off her clothes in public and at home, and wake up with blood and faeces strewn across the bed.
Sometimes, it would take up to three hours for Sandra and her husband to change a sanitary pad.
Mary has childhood disintegrative disorder, a developmental disorder resembling a severe form of autism. She has the mental capacity of a two year old, cannot speak, is not toilet trained, self harms when distressed and is prone to violent tantrums.
For Sandra, sterilisation was a chance to give her daughter some dignity and relief.
For human rights and disability groups, the sterilisation of people with disabilities is an act of violence amounting to torture, a form of eugenics designed to improve the quality of the human race, and an abuse of a man or woman's fundamental human rights.
Under Tasmanian law, it is possible for a third party to have a man or woman sterilised, therefore rendering them permanently infertile.
But an Australian Senate inquiry into the involuntary or coerced sterilisation of people with disabilities is looking at the practice in Australia, and could see laws surrounding the procedure changed.
As the chief executive of Women With Disabilities Australia, Mt Stuart's Carolyn Frohmader has been instrumental in making the inquiry happen, driven by a firm belief that involuntary sterilisation is an abuse of essential rights and freedoms.
``Women and girls with disabilities should have the same right to make their own decisions about their bodies that everyone else does . . . to have them sterilised without their full consent is an absolute breach of the most fundamental human rights we have in this country,'' Ms Frohmader said.
``Unfortunately, if you look at the applications made by families and the judgments made, there's this idea of burden _ that if you remove a girl's capacity to menstruate, somehow you are removing a burden for families and carers.''
Ms Frohmader said WWDA had been working to change sterilisation laws for 15 years, but had ``really upped the ante'' in the past four years, working with the United Nations Human Rights Council to pressure the federal government.
She said they wanted to see a whole raft of reforms, including ``the banning of all sterilisations of girls under the age of 18, and the prohibition of sterilisation of adults in the absence of frank and full consent, except where there is a serious threat to health or life''.
In Tasmania, as in other states, a parent or guardian must go through the state's Guardianship and Administration Board or the Family Court to legally have a sterilisation done, except when there are urgent medical reasons for the procedure.
But Ms Frohmader said that while evidence seen in the inquiry did suggest that the number of surgical sterilisations had dropped in the last decade, she was concerned that under current laws, it was still possible for such a procedure to be done without a person's consent.
In a submission to the Senate inquiry, the Australian Human Rights Commission pointed to the story of Bella, a 34-year-old woman with a mild intellectual disability, who, when she was 12, was told by her parents she was going to hospital to have her appendix removed.
The submission said she was, in fact, having her uterus removed _ something she wasn't told for another nine years.
``If they'd told the truth and asked me, I would have shouted no . . . my sterilisation makes me feel I'm less of a woman when I have sex because I'm not normal down there,'' Bella said.
``When I see other mums holding their babies, I look away and cry because I won't ever know that happiness.''
Sandra said Mary's case was different to that of people with physical, or mild to moderate intellectual disabilities, as she had a severe intellectual disability and wasn't capable of giving consent, or making decisions about her body.
``There's just no way, she's got the mental age of a two-year-old . . . she can't look after herself, she requires 24-hour care, and there's a total lack of dignity, Sandra said.
``She just doesn't understand any of it and it stops her from being able to enjoy life.''
Sandra said gaining permission for surgical sterilisation didn't need to be any more difficult for parents and carers, after two failed attempts through the Guardianship and Administration Board left her family traumatised.
She said she and her husband had tried less invasive options _ two different contraceptive pills and a menstrual management education program _ with disastrous results, and felt sterilisation was their last and only option.
``The moodiness that can be caused by the contraceptive pill was exacerbated with her . . . we had broken furniture and I'd end up on the floor in tears, because I've still got scars from when she scratched me and bit me, and my other daughter had a whole clump of hair pulled out,'' she said.
``No one wants to feel as angry as Mary did and have those side effects from medication, I can't imagine putting her through that for 30, 40 years. That is cruel.
``In some situations, medication can be more invasive than surgery.''
Sandra said she understood the need for legal safeguards, but didn't think people in Hobart or Canberra should have the final say in Mary's life.
``Mary has seen doctors, gynaecologists, psychologists and psychiatrists, and those that we have seen have given their expert advice that a hysterectomy is an appropriate action to take,'' Sandra said.
``Unless you've lived in this situation, you don't really understand, and you have to come to that realisation that your child is so disabled they can't ever really look after themselves, and you grieve for the loss of future grandchildren _ everything.''
Sandra said she was hurt and offended at the suggestion her actions amounted to torture.
``I just think it's wrong that people can vilify you and criticise you and judge you when they don't really know what it's about, unless they've walked in your shoes,'' she said.
``Any decisions we make on Mary's behalf are entirely about making her already very difficult life easier for her, it is never about us.''
Ms Frohmader said vilification came on both sides.
``People make terrible judgments and comments about me, I get a lot of hate mail. It's been an enormous challenge over many years to get here and nobody thinks about the personal cost,'' Ms Frohmader said.
``Nobody thinks about the fact that I'm a mother too _ I'm a single mother _ and I've just lost my house in the bushfires.''
But Ms Frohmader is confident her hard work will pay off, regardless of the outcome when the Senate inquiry's final report is released on June 19.
``If the inquiry doesn't bring change, we will just keep doing what we do, it's only a matter of time . . . the United Nations has clearly said that sterilisation constitutes torture, and as a signatory to the convention against torture, Australia should comply,'' Ms Frohmader said.
*Names have been changed.