Anita cannot speak or comprehend complex information. At 28, she communicates mostly with facial expressions and baby-like sounds. When excited, she washes her hands. When her periods cause cramping and pain, she moans and agitates, unable to understand.
Listen to This Article
Open this article in the New York Times Audio app on iOS.
To eliminate this monthly discomfort and ease the burden of caring for her, caregivers at an assisted-living home in Reykjavik, Iceland, proposed an unusually aggressive step. The home’s manager recommended that Anita undergo a hysterectomy, a major surgical procedure to remove her uterus and end her periods.
Eirikur Smith, an official in Iceland’s disabilities office, discovered this plan last year during a routine visit to the home.
“Does she even know if she wants children later?” he recalls asking.
The manager, he said, was stunned. “She just laughed in my face.”
“‘Of course not,’” he said she replied. “‘Why would she ever want children?’”
Forced sterilization, with its history of racism and eugenics, is banned under multiple international treaties. Thirty-seven European nations and the European Union have ratified the Istanbul Convention, which declares, without exception, that nonconsensual sterilization is a human rights violation.
But a New York Times investigation found over a third of those countries have made exceptions, often for people that the government deems too disabled to consent. Some countries have banned the practice but not actually criminalized it. And records show that the Istanbul treaty’s official watchdog has repeatedly criticized governments for not doing enough to protect disabled people. (The United States has signed but not ratified a separate treaty on the issue and sterilization laws vary by state).
The result is that people with intellectual disabilities — mostly women — are still being sterilized, even when it is not medically necessary.
Doctors and experts believe that the practice is rare, but record-keeping is inconsistent and data is often unreliable. Iceland’s government, for one, does not keep a tally.
“So many times, you hear it’s in the best interest of the woman,” said Catalina Devandas Aguilar, a former United Nations special rapporteur for disability rights. “But often, it’s because it’s more convenient for the family or the institution that takes care of them.”
That pattern has complicated things for lawmakers and doctors. While in generations past, governments around the world sterilized disabled people as a matter of policy, today it is parents and caretakers who seek out the surgery — saying they have the women’s best interests at heart.
In Iceland this March, for example, Hermina Hreidarsdottir authorized a hysterectomy for her severely cognitively impaired 20-year-old daughter, whose periods sometimes lasted six weeks.
“I know it’s taboo, but we didn’t do it to make her infertile,” Ms. Hreidarsdottir said. “We wanted to make her feel better.”
Since 2019, Iceland has banned nonconsensual sterilization except in cases of medical necessity. But the law covers only tubal ligation, the surgical blocking of the fallopian tubes. Hysterectomies are considered medical treatment and excluded from the ban.
Neither the treaties nor most national laws address how seriously disabled women like Anita or Ms. Hreidarsdottir’s daughter could ever consent to such a surgery. United Nations standards say that caregivers should try alternative ways to communicate with severely disabled people, but experts agree that happens sporadically at best.
In France, the law allows the sterilization of people with severe mental disabilities under certain circumstances.
“When we say ‘sterilization of the disabled,’ we might sound like Nazis, but this completely ignores the diversity of disabilities, the gravity of certain disabilities, and the distress of parents,” said Ghada Hatem-Gantzer, a Paris gynecologist who sits on a regional committee that approves roughly three sterilizations annually.
Even when the law is strict, sterilization sometimes continues.
In Belgium, it is generally illegal to sterilize someone without their express consent. But one therapist, Anne Dasnoy-Sumell, said she was counseling two women with moderate intellectual disabilities who had been sterilized at their parents’ insistence recently without understanding what was happening. And Yannick Manigart, the chief obstetrician at Saint-Pierre University Hospital, said that he and his colleagues would still perform the surgery if parents request it and doctors, after consulting with hospital psychologists, deem it in a woman’s best interest.
In Iceland, Mr. Smith, whose sister has Down syndrome, was particularly frustrated with Anita’s case. Notes by his colleagues show that caregivers had not tried a hormonal intrauterine device, or IUD, which can shorten periods.
“They proposed hysterectomy without consent or conversation,” one of Mr. Smith’s colleagues wrote. A Times reporter visited Anita’s home several times, observed her and reviewed records related to her case, which refer only to her first name.
After Mr. Smith intervened, the home’s manager stopped pursuing the surgery.
Iceland, like its Nordic neighbors, has a dark history in this area. In 1938, the country began a policy of sterilization and abortion for people its law called “feebleminded.” Such policies have long since been abandoned and Iceland is now a leading voice on human rights issues. The country’s Ministry of Health said it had tightened its sterilization laws over the years with the treaties in mind, and would continue to do so.
“Performing sterilization without the informed consent of the person concerned is considered to be a violation of their rights,” the ministry said.
Still, Mr. Smith said he had seen other cases like Anita’s recently. The hardest to spot, he said, involved parents and doctors who pressured disabled women to consent. “Not necessarily for eugenic purposes,” he said, “but still definitely to control and affect their sexual and reproductive health.”
For him, this issue is simple. A woman does not lose her human rights because she is disabled or has long periods.
But he acknowledges that he is hardly unbiased. His sister, Kristin, was sterilized at their mother’s insistence.
“She gave her written consent,” Mr. Smith said. “But she was misled.”
‘What If I Want to Have Children?’
Kristin Smith always knew she was into boys.
As a teenager in the 1990s, she sang along with the Spice Girls and fangirled over the Irish boy band Westlife. She watched “The Bold and the Beautiful” and dreamed of marrying.
She was part of a new generation. Women just a few years older recall comparing abdominal scars with classmates in special schools. Ms. Smith was among Iceland’s first students with Down syndrome to graduate from a mainstream high school — the same one as her older brother.
But she remembers feeling under near-constant surveillance by her mother. Ms. Smith’s mother declined to be interviewed.
At age 20, Ms. Smith said, her mother arranged for her to receive a tubal ligation. “I told my mom, ‘What if I want to have children later?’” Ms. Smith recalled. “But she said no. It would be too difficult.”
It is rare for people with Down syndrome to become parents, and their children have an increased chance of having the condition themselves.
Any talk of children, though, was theoretical. Ms. Smith had never even had a boyfriend. She consented to the surgery.
Ms. Smith remembers her mother taking her to the hospital. The doctor explained that she would be unable to have children. Then came medicine to make her sleepy.
Her mother assured her that this was for the best. And sometimes, even now, Ms. Smith agrees. “It’s a good thing,” she said. “I feel fine about it.”
‘This Is What Is So Horrible’
Mr. Smith joined Iceland’s Disability Rights Protection Office in 2016. Though Iceland had signed a pair of treaties that banned nonconsensual sterilization, neither had been ratified and the law still allowed it for the mentally ill.
Iceland’s health ministry even ran a committee that approved requests from parents, which has not previously been reported. The ministry says it kept no records on how many sterilizations occurred this way. But a spokesman for Landspitali, Iceland’s largest hospital, said that between 2013 and 2017, the committee approved the sterilization of six teenage girls.
“This is what is so horrible: I never met any of the children who would be sterilized. Never,” said Anna Sigrun, a former hospital social worker who said she was ashamed to have recommended cases to the committee.
The committee disbanded in 2019 after Iceland banned nonconsensual tubal ligations. But sterilization cases continued to pop up in Mr. Smith’s office.
Less than a year after the ban was passed, his unit intervened on behalf of an 18-year-old girl with severe cognitive impairment. Her foster mother, with the support of government social workers, sought a hysterectomy to manage her periods. Mr. Smith said the surgery was simply a way to ease the burden of care.
“They reasoned that she would be easier to handle afterward,” he said. The surgery did not go forward.
‘The Best Medical Treatment’
Hermina Hreidarsdottir’s fourth child, a girl, was born with six fingers on her right hand and a pointy, almost elfish left ear. One eye was a lighter shade of blue than the other, but she otherwise seemed healthy.
After a few months, though, Ms. Hreidarsdottir (pronounced RAY-thars-DOH-tair) realized that her daughter had trouble seeing. Doctors said she might be blind in one eye.
“I knew something was not normal,” she said. She welcomed a reporter into her home to meet her daughter, but asked that she not be named.
Finally, at about 8 months old, the girl was diagnosed with two rare genetic disorders. For the rest of her life, doctors said, she would see in only two dimensions and would probably struggle to speak and understand.
With no special-education programs nearby, Ms. Hreidarsdottir placed her daughter in a mainstream school. She dreaded her daughter’s first period. “I knew she wouldn’t handle it well,” Ms. Hreidarsdottir said.
At 11, her daughter started menstruating, sometimes for weeks. Confused, she would sometimes remove her pad, then bleed in class, her mother said. Her doctor says she has the mental capacity of a 4-year-old.
Ms. Hreidarsdottir said she tried hormonal injections, but struggled to give her daughter a shot every three months. An IUD failed to shorten the periods.
Dr. Alexander Smarason, the young woman’s longtime doctor, concluded that because she could neither understand nor manage her periods, a hysterectomy would be in her best interest.
“That’s just giving her the best medical treatment possible for her quality of life,” he said. “We cannot deny her that right.”
Ms. Hreidarsdottir said she also knew that disabled women face increased risks of sexual assault, and she feared an unwanted pregnancy. At 56, she could not care for another child and knew her daughter would never be able to.
Decisions like these, involving people who almost certainly cannot give express consent, hang over the sterilization debate. Katrin Langensiepen, a German politician and one of the few visibly disabled members of the European Parliament, is pushing for a strict Europewide ban on nonconsensual sterilization. Many of history’s notorious eugenics practices, she said, were justified as being in a disabled person’s best interest.
But she acknowledged that some parents saw things differently. “They have the deep, strong belief: I need to protect my children,” she said.
At 20, Ms. Hreidarsdottir’s daughter has soft eyes and a knack for puzzles. She loves audiobooks. In March, her mother explained that she would go to sleep and have an operation to feel better.
“I don’t think she understood,” Ms. Hreidarsdottir said. “But we always try to explain things.”
Even after her surgery, Ms. Smith kept dreaming of romance. She considered trying dating apps, but in every potential profile picture of herself, all she saw was someone with Down syndrome.
Every summer, she attended a camp for adults with disabilities. During those Icelandic nights, under vast skies that never went dark, she hiked, sang karaoke and mingled outside her mother’s gaze. “I felt free,” she said.
There, during the summer of 2020, she met Sigurdur Haukur Vilhjalmsson, who also has Down syndrome. They both liked pop songs and soccer. He was charming and had a silly streak, a contrast to her more serious personality. He made her laugh.
At age 38, she had found love.
The following Christmas, on the beach in Tenerife, Spain, Mr. Vilhjalmsson knelt in the sand and proposed.
They now live together in Husavik, a town on Iceland’s northern coast. They share a cozy one-bedroom apartment in a building for people with disabilities. Their baby pictures hang in the living room.
Some residents need lots of help. Ms. Smith and Mr. Vilhjalmsson are the building’s most independent tenants and its only couple. She washes dishes in a restaurant. He works in a hospital kitchen.
They enjoy road trips, cooking and music. Mr. Vilhjalmsson plays the drums. Ms. Smith serenades him with “Husavik (My Hometown),” a song from the Will Ferrell movie “Eurovision Song Contest.”
They’re picking a wedding date. On Sundays, they walk hand in hand around the port. They talk about their future.
Mr. Vilhjalmsson wants children. Ms. Smith has spent years saying that she never did, that her mother’s decision was for the best. Now the conversation is less abstract.
Does she want to be a mother?
“I wanted to,” she said.
Her eyes welled. She paused, composing herself.
“I still want to.”
Dagny Lind Erlendsdottir contributed reporting.
Audio produced by Adrienne Hurst.