A beautiful, healthy baby. It’s what the young mother had been hoping for, especially after learning during her pregnancy that she had HIV. But her joy was short-lived. Just 12 hours after giving birth, as she lay in bed in the state-run Hospital de Curicó in Chile, the 22-year-old woman was told that she had been sterilized — without her consent. She and her husband had wanted more children — a dream that was extinguished by the unasked-for surgery.
What does the experience of a heterosexual woman with HIV in a faraway country have to do with queer issues? Everything, when you think about it.
The right to bodily integrity and self-determination resonates deeply for many queer and trans folks, including those with HIV. We know that any surgeries on a person’s body should be aligned with their wishes and needs, not forced upon them. And queers know what it is like to experience paternalistic controls on their behaviour, such as Section 22 orders by the Ontario health authorities, which can be issued if a person contracts an STD three times, even easily transmissible STDs that anyone could catch more than once.
The ability to decide what to do with your own body has been part of queer struggles since the days when homosexual acts were illegal and is key to current political battlegrounds such as sex work. The criminalization of HIV exposure is along the same continuum as HIV reproductive muzzling — they both assume that people known to have HIV are characterized by an inability to be responsible and deserve to be the focus of special discriminatory tactics that others don’t face.
The young Chilean woman, known to the courts as FS, underwent the nonconsensual tubal ligation operation in 2002. But she fought back, seeking reparation from the Chilean government. In February, after years of having the Chilean ministry of health and courts refuse to acknowledge the violation of her body and her rights, FS took her struggle to the Inter-American Commission on Human Rights, the regional body that monitors member states of the Organization of American States (OAS) for compliance on rights issues.
“She is very frustrated by her government, but she feels that bringing this international case is a second chance at justice,” says lead attorney Lilian Sepúlveda of the Center for Reproductive Rights (CRR), a US-based legal advocacy firm working on FS’s case in collaboration with the Chilean HIV organization Vivo Positivo. “It’s been quite an ordeal that she has been through.”
FS is not alone. A 2004 Vivo Positivo survey indicated that 31 percent of Chilean women with HIV they interviewed had also been robbed of their ability to reproduce — of those women, 29 percent had been pressured by healthcare professionals and almost 13 percent had been sterilized against their will. Sepúlveda says she’s heard anecdotally of women in other countries with similar stories.
The indignity FS experienced is a particularly shocking manifestation of a form of prejudice familiar to people with HIV around the globe — the widespread “common sense” notion that it’s not appropriate for them to reproduce or for that matter to be sexual at all. These ideas are founded on the misguided assumption that people with HIV are irresponsible and represent a danger to others.
“There is a great deal of ignorance, so communication is key,” says Sepúlveda. “The medical facts contradict all the myths and misconceptions out there about people with HIV/AIDS.”
Effective treatment strategies for an HIV-positive mother can reduce the risk of HIV transmission to her baby to less than two percent. Many HIV-negative mothers are at significant risk of having children born with serious medical concerns, but they are given appropriate information and encouraged to make their own decisions — they don’t just wake up one morning with their tubes tied.
There are also strategies to ensure that even serodiscordant couples — where one parent is positive and the other negative — can conceive together with low to zero risk of HIV transmission, including a technique called sperm washing, where the sperm of an HIV-positive man is completely separated from the seminal fluid that can contain HIV. The bottom line is that there’s no justification for denying those with HIV the same reproductive rights as anyone else — the ability to choose whether or not to have any children they may desire.
It’s worth remembering that the threat of reproductive sterilization in Canada is not as distant as we might think. As recently as 1972 people with disabilities were sterilized without consent — and First Nations and Métis people were disproportionately targeted.
More than 8,500 miles away from here, one woman is fighting to end this discriminatory practice. The fact we only know her as FS doesn’t matter — someone with HIV should not have to expose herself to personal risk in order to demand fair and equal treatment. The right to privacy for people with HIV is a key issue that also deserves our support.
FS’s quest for justice is an opportunity to consider the links between reproductive freedom and other inequities.
“Slowly we are making connections and understanding the relationship between all of these issues,” says lawyer Sepúlveda. “I am very optimistic.”