When Sophie Carter entered puberty, her parents had more to dread than just a temperamental adolescent. Sophie is now 31 but still has the intellectual capacity of a three-year-old. There were no concerns about drugs or boyfriends and no chance of having “the talk” about sex with her. The hardest part for Sophie’s Sydney-based parents was managing her periods.
“She has an older sister and a younger sister and we tried to get her to use pads, but it just didn’t work,” said Merren Carter, Sophie’s mother.
“People talk about stigma associated with menstruation but there was none of that at our house. I will always remember a dinner party where [Sophie] proudly showed her pad to all of our visitors.”
Merren and her husband, John Carter, put Sophie on Depo Provera birth control for five years. However, John, an endocrinologist and professor of medicine at the University of Sydney was concerned about the long-term risks of osteoporosis associated with the hormonal contraception. They began looking for an alternative solution. At first they considered endometrial ablation, a procedure that destroys the lining of the uterus, and reduces menstrual flow. They received approval from the Guardianship Tribunal of New South Wales, a governmental body that determines consent for special medical treatments for adults who are incapable of making their own decisions.
However, the Carters decided not to go ahead with the procedure as it would have to be repeated. Instead they applied for Sophie to have a hysterectomy. The Guardianship Tribunal approved it and when Sophie was 21 she had the operation. Her limited independence is no longer compromised by menstruation, Merren said. Sophie continues to take swimming lessons without monthly interruptions and doesn’t have to have pap smears, under general anesthetic, which many of Sophie’s friends have to endure.
The Carters consider themselves lucky. The Guardianship Tribunal concluded that the potential distress to Sophie’s spiritual, mental, and physical health caused by menstruation justified the procedure. However, many of Sophie’s mentally handicapped friends have had similar applications rejected and some have gone overseas, to New Zealand or Thailand, for hysterectomies.
It is likely to get even more difficult for Australian parents in situations like the Carters’ to get approval for sterilizing a disabled child. A July Senate committee report recommended that sterilizing disabled children without their consent should be banned unless it can be proven that the child is never likely to develop the capacity for consent. The report also recommended that taking children or attempting to take children overseas for a sterilization procedure should be a criminal offense.
The report followed a 10-month inquiry, with submissions from parents, carers, human rights groups, and disability advocates. The committee’s list of 28 recommendations include that the definition of an individual’s capacity to consent be identical in every Australian state and territory, and that sex education information be targeted at the disability sector.
In one of the recommendations, the committee said that it “abhors” suggestions that sterilization should be used to manage pregnancy risks due to sexual abuse.
Sterilizing disabled people exudes more than a whiff of eugenics. It recalls U.S. policies in the 20th Century that led to the sterilization of more than 60,000 people by 1960, as well as the infamous Nazi “Law for the Prevention of Offspring with Hereditary Diseases,” in 1933. But due to difficulty with menstrual management or a fear of pregnancy, carers often feel that sterilization is their only option. A 2003 study in the journal Mental Retardation and Developmental Disabilities Research Reviews about the ethics of involuntary sterilization of mentally handicapped people examined surveys from the 1980s and 1990s and found that roughly half of all parents with mentally disabled children have considered or would consider sterilizing their child.
These decisions are often controversial. The 2006 Seattle “Ashley Treatment” case, in which a hysterectomy, among other procedures, was used to stunt the growth of a six-year-old girl, who had static encephalopathy, is still contentious. Her parents decided on these treatments to ease the burden of caring for her.
“Most parents have mixed motives,” said Douglas Diekema, a professor of pediatrics at the University of Washington and Seattle Children's Hospital, who wrote the study. “Clearly many of them do want some help with menstrual control, but they really, almost all of the time desperately want their child never to get pregnant… They are concerned about sexual abuse and their child been taken advantage of. Although a sterilizing procedure doesn’t do anything to alter that possibility, what it does do is that it prevents, in their mind, a pregnancy on top of that.”
U.S. laws also vary from state to state. Diekema says that, generally, getting approval for the procedure is “fairly restrictive” throughout the country. Much like in Australia, the rate at which sterilization in disabled populations occurs is unknown. At the Seattle Children’s Hospital, Diekema says one or two procedures are approved a year. Carolyn West, a fellow of the Royal Australasian College of Physicians and professional member of the New South Wales Guardianship Tribunal, said that approximately one to three procedures are approved yearly in the state.
One of the committee’s recommendations is to record the number of child sterilization cases in Australia “in the same way in each jurisdiction.” Even though the exact number of procedures are hazy, the figures seem to have been high enough to have caught the attention of the United Nations, which in its 2012 Conventions on the Rights of the Child Report, wrote that they were “particularly concerned” that the sterilization of disabled women and girls continues in Australia and advised that the practice be banned for non-therapeutic purposes. The United Nations Special Rapporteur on torture has highlighted that forced sterilization of disabled women may constitute torture, or ill treatment.
Submissions to the Australian Senate inquiry detailed some distressing instances of forced sterilization. One woman’s father, who believed that she should not have children, told her she was going to the hospital to have her tonsils taken out. “I did not have a sore throat afterwards,” she told the committee. It was only when she was trying to have kids with a long-term partner that she had realized what happened. Her partner eventually left her because he wanted children.
Another woman was forced to have a hysterectomy by her parents, even though she told them that she did not want to have the operation. Another disabled woman who was sterilized collected more than 100 strollers, as well as diapers, toys, and clothes for children that she would never have.
Stella Young, a comedian and disability advocate who suffers from osteogenesis imperfecta, a congenital bone disorder, wrote in her submission that a specialist tried to convince her parents that a hysterectomy would be best for her, to avoid the “inconvenience” of menstruation. Young was just four years old at the time. “My parents, to whom I’m eternally grateful, were horrified and rejected this ‘advice,’” Young wrote.
But menstrual management played a big role in many submissions by parents and carers. One grandmother wrote that her granddaughter will not be able to manage her periods, when she starts menstruating, as she often “finger paints” with and “smears” the contents of her diapers. One submission described how a woman remained in the bathroom at her place of employment with blood on her clothes due to the onset of her period.
West said that the New South Wales Guardianship Tribunal will not approve a sterilization procedure for menstrual management or contraception except in life-threatening cases, or when there is a significant risk of harm to the health of the disabled person. For instance, if the bleeding leads to anemia, or if the hysterectomy is part of a cancer treatment. Instead the tribunal recommends using other methods of contraception.
For some disabled people, intrauterine devices, may need to be inserted under a general anesthetic, and those who take the contraceptive pill may have breakthrough bleeds. In Sophie Carter’s case, her parents successfully argued that they did not want to expose her to long-term risks associated with Depo Provera.
“There are no methods of menstrual regulation or fertility regulation that are perfect, and there will be girls and women in whom specific methods are unsuitable. Alternatively there are a very small number who may have their best interests served with a hysterectomy and sterilization,” said Michael Permezel, the president elect of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG).
Then there are the parents who believe their children are entitled to a sex life but are not necessarily capable of having children. In another submission, one woman describes how her 27-year-old daughter has a boyfriend but if she were to get pregnant, the child would be “dead within a week.”
“Advocates who say she has the ‘right’ to have a child need to factor in her ability to be RESPONSIBLE for that child,” the submission reads.
The RANZCOG submission to the inquiry described the case of a woman in her mid 20’s who had an intellectual disability and an IQ of 70. The woman had seven children, who were all handed over to her elderly parents. Even though the parents managed to have a sterilization procedure approved, the woman did not show up to the operation. Two years later the woman gave birth to another child. The parents had to reapply for approval, but were denied by the guardianship board. The woman fell pregnant again, this time to a violent partner, who killed her during the pregnancy.
According to RANZCOG, “the guardianship board gave conflicting rulings thus distressing the elderly parents and providing uncertainty for the health service,” though it’s unclear whether the woman’s death could have been avoided if the board had handled things better. Some carers are worried about one of the recommendations of the Senate inquiry: that courts and tribunals should develop information packs to guide medical experts in sterilization cases, which should specify that the courts and tribunals are not authorized to consider a person’s ability to parent in the application process.
Establishing the ability to consent is tricky because those with intellectual disabilities that can have sex may not be aware of the reproductive consequences, and parents are concerned about the potential for grandchildren.
In Queensland, the Guardianship and Administration Act 2000 defines the capacity to consent to mean the person is capable of understanding the nature of the sterilization procedure, freely makes the decisions about the proposed sterilization, and is able to communicate the decision. But where sex and contraception fall on that spectrum varies on a case-by-case basis.
Merren Carter said that contraception was not the reason that she wanted to get Sophie sterilized, but she is relieved that her daughter cannot get pregnant. She fears that Sophie is at high risk of getting into situations where she might be sexually abused. “Once, she didn’t arrive at her train stop for five-and-a-half hours. I had no idea where she was and what happened. Sophie was not able to tell me.”
Carter agrees with almost everything that the Senate Committee Report said, but feels that many carers for children like Sophie will be too intimidated to go to the Tribunal to request a hysterectomy, “because they know they will be knocked back.”
Sophie’s friend, who went to New Zealand for the procedure, was not approved to get the operation in Australia because her case was not considered serious enough. The New South Wales Guardianship Tribunal states that a hysterectomy must “promote and maintain a person’s life or prevent serious damage to their health.” The Carters are attempting to get the definition of “serious damage” expanded to include mental as well as physical aspects of health.
One parent who has accepted that a hysterectomy may not be possible decided to put her daughter on the pill, continuously, despite the health risks. “She told me, ‘Oh well she has to die of something’,” Carter said. “It’s sad but as carers you are pretty worn out anyway and this is just another battle that you know you are going to lose.”