Women with disabilities forcibly sterilized: ‘They operated on me with no explanation. They destroyed me’

Until now, she had never spoken about the worst day of her life. She was just 20 when her mother tricked her into going to the Valme University Hospital in Seville (Spain), where she found herself on the operating table. The doctor had to break the news to her — she was going to have a tubal ligation operation to sterilize her.

“They told me, ‘Sign here,’ when I was already blurry from the anesthesia,” she recalls now, at 31. “I didn’t know what I was signing.”

Carmen, who prefers to use a pseudonym, has a significant intellectual disability. Her mother, who is her legal guardian, didn’t think she was capable of caring for children. Families may have good intentions of protecting these women, but advocacy groups caution that this often backfires.

It was 2013, and the forced sterilization of people with disabilities was still legal in Spain in exceptional circumstances and with a judge’s authorization. Although the country banned the practice in 2020, it still remains prevalent in most of the European Union, with only nine countries having made it illegal. This persistent practice is in direct violation of the Istanbul Convention against violence towards women.

“The oxygen, I remember it so vividly. I didn’t want to drift off to sleep and I was crying, begging them to let me have at least one child,” the young woman said. However, her pleadings fell on deaf ears. Even today, she still hears her mother justify the decision. “She said that without the operation, I would have given birth to many children, and that this was the best thing she could have done for me.”

The first thing Carmen saw when she woke up was the scar, and that was the beginning of her suffering. “Every time I see it, I want to die.” From that moment on, her relationship with her mother deteriorated and drove her to a center for people with disabilities, which is like living in a prison for her.

“I can never forgive her, she took away half my life.” More than a decade later, she still feels resentment and doesn’t think she will ever get over the trauma.

In the year 2020 alone, Spanish courts adjudicated 28 proceedings for forced sterilizations of persons with disabilities. This was the last trickle of cases until the law changed in December 2020. Over the previous decade, 932 cases were brought to the court. Nonetheless, organizations say the reported numbers do not reflect reality. They contend that the actual figure should include illegal sterilizations, which are challenging to quantify.

“We have known cases of women with disabilities who became pregnant and their families decided to terminate the pregnancy without their consent. And they were also sterilized during the abortion operation,” said Isabel Caballero, coordinator of Fundación CERMI Mujeres, a Spanish non-for-profit women’s advocacy organization.

“Some women didn’t know they had a tubal ligation until they later tried unsuccessfully to get pregnant. Suddenly, they remember going to a hospital for an operation when they were 18 and never knew what it was about,” added Caballero.

Victims of forced sterilization are often misled about the procedure and are unaware that it’s irreversible. Rosario Ruiz, an intellectually disabled 53-year-old woman from Seville, wasn’t informed about the operation’s ramifications. When she was 21, Rosario met Antonio at a day-care center, but her parents refused to accept their relationship and spoke to her family doctor, who suggested sterilization. “They took me to the hospital and told me that if I didn’t have the operation, they would separate me from Antonio and put me in an institution until I died.”

Rosario saw the scar on her belly the next day. “What have they done to my life? Am I a useless woman now? Am I the only one unfit to be a parent? How could they destroy me like this?” She has since accepted her fate, but she hasn’t forgotten about it. She still feels an emptiness inside. Sadly, she shares the misguided belief that a woman who cannot conceive is incomplete. “I’ve lost my rights as a woman and as a person,” she said.

Three years ago, Rosario’s life underwent a transformation when the courts agreed to move her into a guardianship regimen. With the aid of the Plena Inclusión association, she now leads a semi-independent life. Despite significant strides in her life, she only gets to spend weekends with Antonio. During weekdays, she dutifully attends to her octogenarian father, who initially doubted her ability to care for anyone.

Although forced sterilization is no longer legally allowed in Spain, there’s still a risk of it happening. Disability lawyer Ángeles Blanco says the procedure is still performed when informed consent is bypassed or forged and patients don’t fully understand the process.

Without the resources to adapt communications for women with expression and comprehension difficulties, “the decision to do something so invasive to women will be made by a family member or professional, and not by the woman with the disability,” said Blanco.

The illegalization debate in Europe

“Forced sterilization is a very cruel form of domination, both of sexuality and reproduction,” said María Eugenia Rodríguez Palop, a member of The Left coalition in the European Parliament. The entire political spectrum agrees on ending the practice, but the debate is in a complicated stage. The European Parliament hopes to ban forced sterilization by including it in its new directive to combat violence against women. This new directive will be up for a vote in early July.

“The directive’s legal basis is limited since it focuses on the crime of sexual exploitation,” said Rodríguez. Thus, the European Parliament is seeking to expand the definition of sexual assault by linking sexual exploitation to reproductive exploitation. Some member states, “such as France, Belgium, and Portugal, are even rejecting the penal ramifications of the directive, despite their tradition of firm support for human rights,” said Rodríguez.

Since 2015, midwife Béatrice Idiard-Chamois has been providing specialized gynecological care for women with disabilities at the Institut Mutualiste Montsouris Hospital in Paris. One particular patient remains etched in her memory, Sophie. A young woman with non-verbal autism, Sophie came to the hospital accompanied by her mother and a midwife, who requested sterilization for Sophie. “They were surprised when I refused,” said Idiard-Chamois.

While institutions cannot mandate contraceptive measures as a requirement for admission, the reality is far from ideal. “The [health care] centers always ask people with disabilities to take some form of birth control. In some cases, the center’s psychiatrist will even prescribe the same birth control pill for everyone without considering an individual’s prior gynecological exams,” said Idiard-Chamois.

In France, it is legal to perform a sterilization procedure on a woman without her consent. The law was modified in 2001 to only allow tubal ligation for people with disabilities in specific cases. Informed consent is the most critical component of the legislation, but it is also the most challenging to ensure.

According to Ghada Hatem, a gynecologist and chief physician at Maison de Femmes de Saint-Denis, a center for women facing economic challenges or abuse, it’s difficult to gauge whether people with severe intellectual disabilities can comprehend and agree. “Practically speaking, it’s not an easy task,” she says.

Hatem sits on the expert committee responsible for evaluating sterilization requests that informs the courts’ decisions. She believes that for women with severe disabilities, sterilization can sometimes be preferable to contraception. “If there is no clear indication that the disability is curable in the near future, why undertake a temporary treatment that has to be constantly renewed?” she asks.

Marie Rabatel, president of the Francophone Association of Autistic Women, vehemently opposes legalizing sterilization in France. She believes this move only opens the door to abuse, especially for women living in institutions. “Protecting women” is just a guise, she argues. “Protect them from what? Getting pregnant from a rape?” Her suspicons are not unfounded, as women with severe disabilities are notably more vulnerable to sexual violence.

Legal loopholes that enable abuse

“For people with disabilities, life in institutions is repressive,” Kristoff Kornyei, a lawyer and activist with the Hungarian NGO Tasz. The residents are treated like children, which makes the very notion of having children a non-issue.

Tibor and Piroska both have intellectual disabilities and share a cozy room full of stuffed animals at the Kolping Tordasi Otthona institution. Their small space is sufficient for their needs but not for raising a child. “If we didn’t live here, maybe we would have considered having a family. But it’s not safe here for children,” said Tibor.

At 58, Piroska no longer needs contraception, although she used to take it every day. “I used to take Overol, some pink pills and some other white ones,” she said. Sometimes they also gave her injections, although she says it wasn’t her choice. “No, the neurologist prescribed them for me,” she said.

The head nurse in this Hungarian center says it houses 200 people, half of whom live together as couples. Yet she says only five women take contraception and “there have been no births or abortions in the last 20 years.” In Hungary, 15 institutionalized women have been subjected to sterilization. The practice is allowed under Hungarian law, one of the three EU countries that does not prohibit sterilization. The other two are Portugal and the Czech Republic.

In Hungary, the sterilization process takes up to a year and involves up to eight gynecological consultations, says the nurse from the Kolping Tordasi Otthona institution. “The court is required to hold a hearing and listen to the patients and their guardians,” said Sándor Gurbai, a spokesperson for the Validity Foundation. However, the procedure for this court hearing is not specified. Furthermore, the patient’s consent may not be necessary in some cases, and the law asserts that a patient’s objection must be verbalized. “If the individual is disabled and remains silent, this is considered consent,” said Gurbai. However, a legal loophole excludes cases in which pregnancy is deemed life-threatening, and judges are not obligated to seek the individual’s consent.

Rosa Estarás, a member of the European Parliament from the European People’s Party and the mother of a child with disabilities, argues that sterilization remains a taboo subject. “There has been a permissiveness in criminal codes and the laws of various [EU] member states that prevents people with legal disabilities from starting families.”

The lack of resources leads some families to make drastic choices with irreversible consequences. “Depriving a person of their right to reproduce is a blatant violation of human rights. But families with disabled members don’t have much help. Society can’t just give these families a beautiful message about human rights without providing resources and support. That’s the complicated part,” she said.

Despite Carmen’s mother’s decision and the anger she feels about it, she still loves her mother. But she can’t get a question out of her head: “Why did she have to do this to me?” María Eugenia Rodríguez Palop has a blunt assessment. “We still have eugenics in the 21st century. We want perfect people, which is a dubious standard because perfection always means people like us.”

Sweden’s shameful eugenics program

"It was a secret. Our society was ashamed that people had been forcibly sterilized, so it's not talked about in Sweden," said Swedish film director Kjell Sundstedt. The first country in Europe to abolish forced sterilization implemented a racist eugenics program between 1934 and 1976. The victims were mostly young women who were considered "mentally weak," "rebellious" or of "mixed race."

"The government feared some sort of 'racial suicide' because people with bad genes procreated more than the middle class," said Sven Widmalm, a professor of the history of science at Uppsala University (Sweden). Some of the people judged to have bad genes were siblings of Sundstedt’s mother; four were locked up in a mental institution in the 1940s. Like 33,000 other Swedes, they were forced to undergo sterilization before they could leave the institution.

Maija Runcis, a historian and archivist at the University of Stockholm, discovered documents that reveal an alarming practice. Women could be sterilized on flimsy grounds, such as exuding cheerfulness, painting their nails or being single mothers. "The first application I saw was for a 13-year-old girl whose catechist had requested sterilization because she wasn't paying attention in class," she said. "I have studied hundreds of these applications and often think that this could have happened to me."

The Swedish government's initial implementation of the policy inspired by Nazi Germany was widely favored by society, but questions began to surface soon after. To make amends, the government established a financial reparations fund of about $16,000 per victim, but only 3,000 people applied. Maija claims that "most were simply too embarrassed to admit that they had been unwillingly sterilized."

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