Nov 1, 2012

Who has the right to sterilise the disabled? Families divided

A Senate inquiry is looking into the forced sterilisation of women and girls with disabilities. Crikey intern Yolanda Redrup finds families are split on the practice.

A Senate inquiry into the sterilisation of disabled women and girls is polarising carers and families, following criticism of Australia's laws by the United Nations. Some families want the current laws, which permit sterilisation in certain circumstances, to remain. Others want sterilisation criminalised. The inquiry, launched in September, is investigating the involuntary or coerced sterilisation of people with disabilities. In one submission to the inquiry, a parent of a 27-year-old disabled girl reflects on the difficulties their daughter would face if she bore a child: "The reality is if this person had a child, that child would be dead within a week. Human Services would have to be involved," they wrote. "She rings me or other family members every time she bumps her knee or gets a scratch, so I cannot even fathom the mental trauma childbirth would induce for her." The parent also described how their daughter has developed some independence, but at 27 remained unable to manage her menstrual cycle. Disability advocates needed to consider a person’s ability to raise a child, the parent argues, not just their right to have one. Currently, a family seeking the sterilisation of a disabled person must secure the authorisation of the Family Court of Australia. Legally, sterilisation refers to surgical intervention resulting either directly or indirectly in the individual’s incapacity to reproduce. One mother of a 15-year-old disabled boy who spoke to Crikey agreed with the laws, saying a blanket ban on the practice would ignore the dire situations of people with severe disabilities. "You've got the rights of the person with the disability but you’ve also got the carers rights to consider," the parent said. So far, the inquiry has received just two submissions. In 2010, an independent judge in the Family Court ruled in favour of the sterilisation of 11-year-old Angela (not her real name). Angela suffered from Rett Syndrome, a neurological disorder resulting in limited and regressive intellectual development, physical disabilities and epilepsy. She was unable to speak or control her movements. While her epilepsy was controlled with medication, heavy periods caused her seizures. After trying other medical solutions, Justice Paul Cronin agreed with the recommendation of three doctors that a hysterectomy was "urgent and necessary" to improve Angela’s quality of life. But federal disability discrimination commissioner Graeme Innes says the government needs to criminalise the sterilisation of children and women, unless there is an immediate threat to health or life. "For women particularly, because they are the main people to experience this process, bodily integrity is just a fundamental human right," Innes told Crikey. The United Nations Convention on the Rights of Persons with Disabilities states "persons with disabilities, including children, retain their fertility on an equal basis with others". Disability advocacy groups and the Australian Human Rights Commission have argued that preventing a disabled person from reproducing is a breach of their fundamental human rights. Tricia Malowney, chair of Women with Disabilities Victoria, says the needs of the child should be considered first and foremost. "I don’t buy the argument that it’s in the best interest of the child that she be sterilised," she told Crikey. "Why would you sterilise a child? Is it in the interest of the child or is it in the interest of the carers?" The current laws were formulated in 1992, following the case of 13-year-old Marion (not her real name). Marion was intellectually disabled, severely deaf and suffered from epilepsy, impaired balance and behavioural problems. Incapable of caring for herself physically, lacking the mental capacity to understand the implications of s-xuality and pregnancy and suffering from problems caused by hormone imbalances, the Family Court ruled in 1990 that her parents had the right to sterilise her. The case was taken to the High Court in 1992 on appeal, where it was decided parental authority was insufficient in matters of sterilisation. But the Family Court was able to authorise the procedure, setting a precedent for future cases. The number of sterilisations that have occurred since 1990 is unclear, with estimates ranging from 22 to over 1000. There are fears people have been circumventing the legal system to have sterilisations conducted. Malowney says people are ignoring the legal process because they know they wouldn't be allowed to sterilise their child. "They either find a doctor who is complicit, or they find one that doesn’t know about the legislation," she said. Malowney has friends who were forcibly sterilised during the 1950s and '60s, when institutionalisation of people with disabilities was commonplace. She says she has witnessed the sadness they've experienced. "I’ve spoken to women with cognitive impairments, women who are now out of the institution and living productive lives, but they’ve had this gift taken away from them," she said.

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3 thoughts on “Who has the right to sterilise the disabled? Families divided

  1. Mike Smith

    Tricia Malowney, chair of Women with Disabilities Victoria, says the needs of the child should be considered first and foremost.

    “I don’t buy the argument that it’s in the best interest of the child that she be sterilised,” she told Crikey. “Why would you sterilise a child? Is it in the interest of the child or is it in the interest of the carers?”

    You certainly aren’t considering the rights of the child that the disabled person might be giving birth to.

  2. Clytie

    I don’t agree that desexing (and that’s what it is) is the answer to the issues raised in this article. Long-term contraception is effective (including six-monthly injections).

    For example, my neurological disease causes me a great deal of pain, which was severely exacerbated by my menstrual cycle. I’ve been on hormone therapy for decades, with no observable ill effects. The hormone therapy also provides reliable contraception.

  3. Edward James

    I worked as a volunteer in Parramatta Psychiatric Hospital during a nurses strike about twenty years ago. I noticed and commented on the doling out of contraceptive pills to patients. Twenty or more years down the track. I can read this reasonable question. But i will point out people whom we may consider incapable, can and do bring up fully functioning children who love respect and support their parents. Edward James

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