Trigger Warning for descriptions of forcible sterilization and denied medical treatment, as well as discussion of other forms of discrimination against HIV-positive people and references to sexual violence.
A huge issue for women worldwide is the continued spread of HIV/AIDS. Globally, women make up about half of all people living with HIV or AIDS, and cis women both have been shown to be much more vulnerable to transmission during penis-in-vagina (PIV) intercourse than cis men, and are also believed to be much more likely to contract HIV through violence.
As HIV spreads, many human rights issues affect HIV-positive people around the world, from severe discrimination, attempts to criminalize HIV-positive status, inability to access needed health care, and for cis women especially, violations of reproductive rights. While these problems are prevalent to varying degrees of severity around the world, including the U.S., the Center for Reproductive Rights has just released a new report on the health care-related human rights violations faced by HIV-positive cis women in Chile.
While HIV prevalence is relatively low in Chile, the abuses of human and reproductive rights are horrific. The stories range from mistreatment and denial of treatment for pregnant HIV-positive women to coerced and forced sterilization. The full report, from which I’ve drawn all of the quotes and facts contained in this post, is available as a pdf file here.
A 2004 study of women living with HIV/AIDS documented widespread coercion around motherhood and HIV in the healthcare sector, and found coercive sterilization of HIV-positive women to be a systemic problem. Fifty-six percent of the women surveyed reported being pressured by health workers to prevent pregnancy, and of the women who had undergone surgical sterilization after learning of their HIV status, 50% were sterilized under pressure or by force. The experiences of the women we interviewed, along with anecdotal reports, indicate that the practice of coercive and forced sterilizations, as well as other discriminatory treatment in the healthcare sector, persists.
While the report focuses on Chile, it should be again emphasized that these violates are not unique to this one country. Coerced and forced sterilizations of women who have been deemed “undesirable” by society — whether based on race, poverty, physical disability, mental illness, a combination of these factors or some other one — have a long history, and continue to this day. Further, the report specifically notes that there have been reports of coerced and forced sterilizations of women who are HIV-positive in the Dominican Republic, Mexico, Namibia, South Africa, and Venezuela, among other countries.
The story of Julia (the names of all the women in the report have been changed), who was denied treatment during the miscarriage of her wanted pregnancy, is just one illustrative example of what women are being subjected to:
In 2004, Julia received the good news that her viral load was undetectable. With this improvement in her health and after witnessing other HIV-positive women give birth to healthy, HIV-negative children, Julia and her partner decided to try for a child in consultation with a private physician. However, despite the low risk of mother-to-child transmission (MTCT), healthcare professionals repeatedly chided Julia after she became pregnant, telling her, “‘What were you thinking? Don’t you see that you are going to have a sick child?’”
During the first trimester of her pregnancy, Julia began experiencing an orange-colored vaginal discharge. Concerned, she went to the hospital to have it checked out. Instead of treating her, however, hospital workers turned her away and told her to return for her regularly scheduled check-up. She was admitted to the hospital three days later, hemorrhaging and with severe abdominal pain, but she still sat untreated while the hospital staff attended all the HIV-negative patients first, including those who arrived after Julia. Her pregnancy ended in a miscarriage shortly thereafter, and a paramedic told her, “‘It is because God knows, because you were going to have a sick child.’”
Julia still wonders whether she would have miscarried if she had received immediate medical attention, and the mistreatment she experienced deters her from seeking further healthcare services at the hospital.
This is misogyny, this is bigotry against people who are HIV-positive, this is ableism.
For those who don’t know, the risk of HIV transmission from a pregnant person to their child can be reduced to less than 2% for those who don’t breastfeed, and less than 5% for those who do, if the proper medical care is given. But while this is important information that is not disseminated nearly enough, including to those who need it to make informed reproductive decisions and to those who would discriminate against HIV-positive people, it is irrelevant to the question of whether or not Julia’s rights were cruelly and inhumanely violated. Agreeing with and supporting a woman’s decision is not necessary to defending her right to make it. And even those people who we’ve deemed — often through a prejudicial lens — to have made “irresponsible” decisions deserve the inalienable right to medical care. Always.
They also have the right to make informed decisions about the medical care they do receive, and to refuse any care which they do not wish to receive. This applies universally, but the situation becomes increasingly dire when it concerns major and often irreversible procedures like sterilization, which when done without informed consent impedes the additional right to make one’s own reproductive decisions.
Fracisca is one woman who was forcibly sterilized:
Francisca had checked in to the hospital for her scheduled cesarean delivery, but the night before the operation was scheduled to take place she went into labor. Francisca was brought into the operating room shortly after midnight. Without ever discussing family planning options or Francisca’s desires, the surgeon on duty decided to surgically sterilize her while he performed the cesarean section.
“I learned that they had sterilized me at the time of the cesarean when I awoke from anesthesia a few hours later. I was in the recovery room at the Hospital of Curicó when [the nurse] entered and, after asking me how I was feeling, told me that I was sterilized and that I would not be able to have any more children,” Francisca explained. “They treated me like I was less than a person. It was not my decision to end my fertility; they took it away from me.”
Francisca took all the necessary steps to reduce the risk of vertical transmission to her son, and he was born HIV negative. She and her husband both mourn the loss of her fertility and their inability to provide their son with younger siblings.
Additionally, some women are simply informed that they will be sterilized, without being told that it is their right to make their own decision. And despite the International Federation of Gynecologists and Obstetricians guideline that HIV-positive people should not be discouraged from becoming pregnant, they routinely are. All of this is to not even discuss, as the report does, the chronic verbal abuse, misinformation, and refusal to be treated by doctors for more routine care that women who are HIV-positive face.
It should also be noted that this form of reproductive violence against Chilean women is inextricable from the wider context of violence against women in Chile.
Violence against women is another factor contributing to Chilean women’s risk of HIV infection. A 2004 survey by Vivo Positivo of Chilean women living with HIV/AIDS found that 77% of the respondents had suffered some form of violence, including psychological or physical violence, sexual abuse, and rape. Attempts to negotiate condom use can also expose women to violence, given the strong stigma around male condoms.
In addition to the other forms of violence listed above, reproductive coercion is apparently exceedingly common in Chile. The refusal of cis men to use condoms puts cis women at high risk of transmission. And while likely making up a minority of cases, HIV is often transmitted through sexual violence — indeed, the abrasions likely to occur in a particularly violent PIV rape are believed to make contracting the virus much more likely. Which is to say that for many of these women experiencing denial of their reproductive and other medical rights, these violations are just part of a long line of acts of patriarchal and kyriarchal violence.
Clearly, more education about HIV is needed, but these violations are about a lot more than just misinformation. They’re about the systemic devaluation of women, a lack of respect for the fact that all people have a right to make decisions about their own bodies, and ableist and prejudicial attitudes that construe difference as grotesque and people with difference as somehow less human. Like all social problems, this one is not occurring in a vacuum, and will likely be impossible to address without also countering the more familiar, underlying issues.