She never wanted the disease but she always wanted children.
When she went to the hospital in search of prenatal medical care, she left having been sterilized. Without her informed consent, she had undergone a surgical procedure to prevent future pregnancy.
This is the story of a number of HIV-positive women in South Africa who are victims of forced or coerced sterilization.
Forced sterilization is when a woman undergoes the procedure without her knowledge. Coerced sterilization occurs when a woman is made to sign a consent form while in labor, under distress or without proper information and explanation. She is made to feel like she doesn’t have a choice and that sterilization is her only option.
Sanja Bornman, an attorney for the Women’s Legal Centre in Cape Town, is currently representing one of the center’s two cases of coerced sterilization.
“This is very much contrary to how sterilization is ever supposed to happen,” Bornman said. “A doctor, a proper medical practitioner, has to come discuss the procedure, the pros, the cons, the risks. ”
Bornman hypothesizes that doctors or nurses who perform sterilizations do so for a number of reasons: They may feel HIV-positive women have too many health issues, often require treatment, are more likely to die leaving behind orphans, or will infect their own children with the disease. These health professionals believe sterilizing HIV-positive women will solve a problem that will inevitably manifest itself in the future.
Bornman is disgusted with this rationale. She explains that HIV has become more of a chronic disease, like diabetes, than a perceived death sentence. There are now guidelines to ensure HIV-positive women do not pass the disease along to their children, allowing their children to live normal, healthy lives.
“To sterilize someone on the basis of their HIV status is just archaic and ridiculous,” Bornman said.
Bornman’s client, a 32-year-old South African woman, thought she was saying yes to an IUD–a form of birth control–not yes to a sterilization.
“My case certainly is about holding the government liable for not doing what it’s supposed to do,” Bornman said.
Right now she estimates the case will go on for a year, maybe a year and a half. Their goal is to win the case and use the money to fund the necessary medical procedure that would allow her client to become pregnant. The case is a race against the clock as her client becomes less and less likely to get pregnant with each passing birthday.
Even if her client or any other sterilized women win their case and are able to fund the necessary medical procedures their ability to become pregnant will not be guaranteed because scarring and other medical factors may interfere.
Research also shows women with HIV face widespread, severe and pervasive discrimination, especially when seeking sexual and reproductive health care in public hospitals–the same place where the majority of these known sterilizations have taken place.
The two cases currently being handled by the Women’s Legal Centre are far from the only ones out there. “I Feel Like Half a Woman All The Time,” a report based the experiences of 22 HIV-positive women who were subjected to coerced and forced sterilization, was released in 2011 by the Her Rights Initiative and HEARD, both based in Durban, South Africa.
The women interviewed say not only were they sterilized without giving informed consent, but they were also routinely abused, humiliated and bullied by healthcare workers.
“This is a violation of women’s rights to bodily integrity,” the study says.
Women in the study describe being scared, uninformed and intimidated.
“I was told that if I got another child I would die,” one participant said. “They kept talking about it among themselves but I was never told anything. In the ward, they would talk about the fact I was HIV positive and that therefore I needed the procedure done,” a second participant said. “No form was given to me to read, I was just told to sign,” a third said.
Many patients describe becoming depressed after finding out they could no longer have children.
“I feel like half a woman all the time,” a participant said.
Despite the bleak outlook, there is some hope. In Namibia, three HIV-positive women who had been sterilized brought their cases to court. In July 2012 a judge ruled they were sterilized without their informed consent, but said they could not provide enough evidence to prove it was because they were HIV-positive. A decision on awarding damages is still to come.
The two cases handled by the Women’s Legal Centre will be the first of their kind in South Africa and could set a precedent for what’s to come.