A few years back, Sarah's* family wrestled with the decision of whether or not to sterilize her intellectually disabled granddaughter. At 13, Karen was not only struggling to deal emotionally with her period, but had also been the victim of sexual assault. The family knew that if another assault occurred, and the girl fell pregnant, she would not be able to care for the child.
When asked Sarah about the ethical issues raised by the decision, Sarah spoke plainly. "People who are hollering for it to be made illegal are coming from not a very informed view," she said. "They haven't been involved in the nitty-gritty of looking after a profoundly disabled person. It's damn hard work, hard enough without a baby being involved."
In Australia, court orders can permit the sterilization of intellectually disabled women who cannot themselves give consent. Permission is typically granted if a parent or guardian can prove that the procedure is in the individual's best interest. The process is far from simple and involves an independent guardian being allocated to represent the woman in question. If the court order is issued, sterilization may take place through oral contraceptives, a hormonal implant, or in some cases a hysterectomy.
If you think that sounds extreme, you're not alone. Last year, Human Rights Watch criticized the practice in the Australian chapter of their annual World Report. In 2013, the UN Committee on the Rights of Persons with Disabilities urged the government to prohibit it. But despite pressure from disability advocates at home and abroad, a 2013 senate committee recommended involuntary sterilization be regulated rather than banned. The question of best interests remains a contentious issue today.
As in Karen's case, menstruation and pregnancy prevention are common reasons brought up by those seeking a court order. For many mentally impaired girls and women, the process of getting their period can be at best uncomfortable and at worst terrifying. Families sometimes see the procedure as a way to alleviate trauma and improve quality of life. But critics of the procedure feel that the issue is with our perceptions of women with disabilities and their bodies, rather than their own abilities to cope with menstruation.
"It's primarily the cringe factor around people with disabilities breeding, and people with disabilities menstruating, and someone having to care for them," says Christina Ryan from Advocacy for Inclusion. She believes any forced physical intervention—be it through hysterectomy or even the pill—is not only a violation of international human rights law, but evidence that the voices of carers are often heard louder than the women themselves.
But should the voices of carers be discounted altogether? Shockingly 90 percent of women with intellectual disabilities have been sexually abused, with 68 percent them experiencing abuse before they reach 18. And while sterilization isn't a solution to insidious levels of sexual assault against women and girls, it is a way of avoiding what some carers see as a potential worst-case scenario.
Greens Senator Rachel Siewert chaired the 2013 senate inquiry, and feels that measures need to be in place when a woman doesn't comprehend the information available to them. Although her findings recommend the process should be banned anytime an individual "has the capacity to give consent or is expected to have the capacity in the future," she did admit that extreme, life-threatening situations could call for non-voluntary intervention. But only with a number of safeguards in place.
In the end, Karen's family didn't go through with the process because the system felt too daunting. "Her parents didn't like the idea of having a guardian appointed for her," said Sarah. "They weren't allowed to have any part in that decision other than starting the process off." They now manage the issue through medication, as although the pill is still considered by some to be a form of sterilization, the process of obtaining it is far more straightforward.
Despite struggling with the current process, she agrees with the 2013 committee's ruling that it is an issue that requires court intervention. "I can see why legally they like that decision to be taken out of parent's hands and be put before a court," she said. "People can have all sorts of reasons for doing things, and they might not have the best motives behind them. I don't like the idea of just being able to roll up to a doctor and say, Here, do this."
In the case of Sarah and Karen, it can be argued that the safeguards in place worked, at least as a deterrent. Her family devised other ways to manage her period and contraception needs. But advocates still feel that the option to sterilize an intellectually disabled woman should be removed completely. Christina concludes, "Women with disabilities menstruate like any other women, so we need to support that in the same way we support people to shower or go shopping. It's not OK to do something for the convenience of people; these women have rights." No matter what side of the debate an individual falls, it's clear that this is a difficult conversation for all.
*Some name have been changed.
Follow Wendy on Twitter.