The fight for justice for hundreds of HIV-positive SA women who endured forced sterilisation

In 1997 Sethembiso Promise Mthembu had to have a routine gynaecological operation. She was in her green hospital gown, on the operating bed, waiting to go into theatre, when the senior doctor came to her and, in front of the other patients and staff in the ward, told her that because she was HIV positive he would not operate unless she consented to be sterilised.

The need for the operation, the vulnerability of her situation, the power dynamic of the patient-doctor relationship and the shame of being judged for her HIV status in front of a room full of nurses, patients and hospital staff, all contributed towards her signing the necessary documents. To this day she does not know if her sterilisation was an ideological decision by the doctor, or a position decided at hospital management or even government level. What she does know is that many other HIV-positive women around the country have been through a similar experience.

Read more in Daily Maverick: Women living with HIV still wait for compensation years after allegedly being forcibly sterilised

In an HSRC study on stigma in 2014, it was found that of the 6,849 participants who were HIV-positive women, 7.4% reported being forced into sterilisation. That’s over 500 women. A further 5% reported being forced into abortion and 37% said that they were forced into medical contraception.

It is an issue, Sethembiso says, that came to light during the tea breaks of HIV support meetings, whispered in confidence, once personal trust had been gained. For many Black women, their ability to bear children affects their standing in society so being sterile can be a very shameful secret that many women carry with them.

“Women are more likely to disclose their HIV status than to disclose the fact that they were sterilised. You are still a woman even if you have HIV, if you are infertile, you are only half a woman — UyiNyumba (barren) — the worst derogatory label a woman can have.”

In the support sessions, forced sterilisation was not mentioned but, over time, victims would open up to each other in private about their experiences. These ranged from medical complications to cultural, social and financial issues. A sterilised woman loses her ability to build a family which can bring social and financial security, the traditional right to land, lobola and worthiness within relationships.

Sethembiso realised that there was a need for more profound, formal action to be taken to support and seek justice for the inhumane treatment of these many women who are living with the repercussions of this injustice.

Read more in Daily Maverick: Discrimination against HIV positive women at heart of forced sterilisation

In 2009 she started “Her Rights Initiative” (HRI) along with two other women who were victims of forced sterilisation, a feminist academic and a lawyer. For the past 14, they have been building their networks of victims and working with legal teams to put together a plan of action. They are currently working together with a private international law firm on a class action lawsuit that seeks justice in the form of compensation for 96 women from five provinces around South Africa.

Forced sterilisation is mostly played out through coercion via the dynamics of power and vulnerability rather than physical force, targeting women at a time when they have very little agency in their decisions. However, Sethembiso says, there have been many instances where women did not even know that they had been sterilised and others where women were told after giving birth that suggest even more forceful, violent practices.

The sterilisation mostly happened around pregnancy. It is standard procedure to take full blood tests in the early stages of pregnancy and many HIV-positive women will discover their status at this time. Up until the early 2000s, it was a policy that anyone giving birth who is HIV positive should do so through cesarean section, as the risk of mother-to-child transmission could be mitigated. It was at this point, during this operation that the sterilisation process would take place, either by informed consent, coercive consent or without consent at all.

And according to Sethembiso, it is still occurring today. There is a case, she says, of a young black woman in the Western Cape who was pregnant, HIV positive and suffering from depression who was forcibly sterilised in 2021.

“Let’s talk about it at the beginning of pregnancy rather than initiating the conversation when I am in labour, in a very vulnerable situation. It should be ME who initiates the conversation about contraception and ending my fertility. My Body, My Womb, My Rights and My Decisions.”

Sethembiso herself grew up in uMlazi township outside Durban. She found out her HIV status when she was 20 and, now 49, is considered a long-term survivor, living a healthy life on ARVs for over 20 years. Having started as an “angry activist” in the early 90s, Dr Sethembiso Promise Mthembu completed her PhD in 2022 through UKZN, an accreditation that she says forces people to take her more seriously in her lifelong quest for justice. DM

Read more in Daily Maverick: The Actionists.

The Actionists was launched in early 2023 by photographer Thom Pierce. It consists of on-the-ground problem solvers, community activists, climate campaigners and human rights defenders who engage in direct action. They are people anyone can turn to in difficult circumstances: a growing community of people who care about the future of South Africa. Through a series of photographic stories, Pierce profiles these people. Through a website, discussion forum and social media, the aim is to provide ways for people to get involved.

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This story is one of a series of articles produced by The Actionists to highlight the incredible work of organisations and activists across South Africa in their pursuit of justice and equal rights for all.

This story first appeared in our weekly Daily Maverick 168 newspaper, which is available countrywide for R29.