Angela was 11 years old when a court in Australia ordered that her uterus be removed. Why? Because Angela has Rett syndrome, a neurological disorder resulting in severe intellectual and physical impairments, and epilepsy. A judge decided that it was in her "best interests" to have a hysterectomy.
The decision to start a family is a deeply personal one, and one that these days is often made at a later age than our grandparents' generation. Few of us begin thinking about planning a family at the age of 11, let alone make life-changing decisions about our future reproductive needs and desires.
But for girls with disabilities, the decision to have children can be taken away from them before they reach an age when they can maturely reflect on its significance. In Australia, as in many other countries, parents of girls with disabilities can apply for court orders to allow the involuntarily sterilisation of their child, even a child that young. The laws treat people with disabilities differently, and courts have the power to make decisions for them that have life-altering effects on their future.
In many of the cases that come before the courts, the motivation for sterilisation is not malevolent or ill-intentioned. Parents of girls with disabilities face difficult decisions in addressing their child's transition to puberty and menstruation, and the decision to sterilise is not one that is taken lightly. In Angela's case, doctors expressed concerns about the potential effects of menstruation on her epilepsy, and Angela had suffered from anaemia at one point during menstruation.
But not all factors considered by the court related to Angela alone. The improved circumstances for Angela's mother, who would no longer have to manage her daughter's menstruation, and concerns about other aspects of the burden on Angela's family were taken into account. Although the decision was ultimately made on medical grounds, sterilisation is a drastic intervention for a girl that young.
Forced sterilisation of women and girls with disabilities is a form of violence against women and should end. In a recent report on people with disabilities in healthcare settings, the United Nations special rapporteur on torture Juan Mendez recognised forced sterilisation as an act of violence, a form of social control, and a violation of the right to be free from torture and other cruel and inhuman treatment.
Sterilisation is not a substitute for proper education about family planning, the use of reversible contraceptive measures, and support during menstruation. And the government has a key role to play in addressing these issues.
The Senate's committee on community affairs is holding an inquiry into the practice of involuntary or coerced sterilisation of people with disabilities in Australia. It is crucial for the legislature to recognise that the rights of women and girls with disabilities to have children should not be taken from them because of misguided beliefs about menstrual management, the "burden" on their families and the community, or their ability to raise a child.
The government should introduce legislation prohibiting involuntary sterilisation or any sterilisation for girls under the age of 18, except in cases of a serious threat to a person's health or life.
Every woman and girl has a right to bodily integrity, regardless of their disability. Every girl should be able to have the choice to become a mother when she grows up. This is not a matter of convenience, it's a matter of rights. Angela is nearly 15 years old now and it is too late for her. But no other girl should have her choices and options cut off for the rest of her life just because she has a disability.
