When Nomcebo* was pregnant, she was told by staff at a hospital on the East Rand that “HIV-positive women must not have children”. Eight months into her pregnancy, a doctor induced labour and “practically forced her” to sign a form authorising a hysterectomy. Struggling with labour pains, Nomcebo was in no state to understand what she was signing. She was sterilised that day.
Nomcebo is just one of 18 women from Gauteng and the Eastern Cape whose stories feature in “We were never meant to survive”, a groundbreaking report about the effects of hidden forms of violence on women living with HIV. The report was released this month by the One in Nine Campaign.
One in Nine was formed in 2006 to support Khwezi* the woman who brought a rape charge against President Jacob Zuma. The organisation now works with survivors of sexual violence and carries out rights-based advocacy programmes.
The women whose voices feature in the report came from the Masimanyane Women’s Support Centre, the Positive Women’s Network and the Treatment Action Campaign. They not only shared their experiences but also wrote poetry, produced T-shirts and masks and created a photographic exhibition.
“Sitting with other women who feel the way you feel was such a great thing,” said Busie Mqadi, one of the participants. “There are certain things that I would just not talk about, but when I met these women I really opened up. I realise now that I can still do so many things with my life.” Fellow participant Gladys Likelo agreed. “The way the research was done was really good for me. I want to tell other women that they should speak up and never allow violence from anyone.”
One in Nine’s national co-ordinator, Carrie Shelver, told the Mail & Guardian that the use of “different mediums” such as making art and doing photography allowed “another layer of expression to emerge” that would not have been possible solely through group discussion.
The report’s lead researcher, Dipika Nath, said most of the women interviewed spoke of the “devastating effects of not being loved and supported by their parents and, in some instances, traced their situation, including their HIV status and a life of often desperate poverty, directly back to the absence of a loving parent”. Ndumie*, for example, described how she had been a sickly child and how her father complained about the expenses she incurred. “We should throw the child out of the window”, she heard him say.
The report also details the “generational nature of violence” and how it is transmitted from mother to daughter, so that women “often find themselves caught in the same cycles of poverty, unemployment and economic dependence as their mothers, even as they may hold their absent or negligent mothers responsible for their current plight and the abuse they faced as children”.
This factor, compounded by a lack of sex education, increases young women’s vulnerability to HIV. Men sleep with their wives’ or girlfriends’ daughters. “Just for bread I will let him sleep with my daughter”, one mother is quoted as saying.
The report explains how abuse extends beyond the family circle to public health institutions and police stations. Even when there is no physical violence, women are subjected to various kinds of structural violence.
You can’t say no
On her way to work one morning, Sibongile* was dragged into a nearby compound and raped at knife point by a stranger. A few weeks later she felt dizzy, visited a hospital and discovered she was HIV positive. She did not know what that meant. When she asked her doctor, he said that HIV was a disease transmitted through “having sex with animals”. He told her she would die.
The report further suggests that rural women are particularly vulnerable to abuse by police. According to Manunu*: “The police are corrupt. They say: ‘If you drink my liquor you sleep with me.’ If you don’t, they will beat you like hell. You can’t say no. Police make jokes if a woman lays a complaint.”
Another woman described how her pastor and local police told her not to take legal action against her violently abusive partner. “He is your husband and the father of your child. Why don’t you want him [the child] to know his father?” they asked. Her own family told her she was a “disgrace”. She dropped the charges.
The report also exposes how a lack of confidentiality in hospitals and clinics can further erode the rights of HIV-positive women.
“In their efforts to avoid being stigmatised, men wait to learn their status from their female partners’ test results. As one participant put it: ‘Men are testing with us and they will drink your pills.'” Women not only “bear the burden” of testing, prevention and treatment, “they themselves become HIV tests for their male sexual partners”, the report suggests.
Helplessness, resignation and fear
For Nath, it is crucial to break the silence that “shrouds” such situations. But this involves challenging “stigma, helplessness, resignation and fear”. Johanna Kehler, director of the Aids Legal Network, said the One in Nine report should “become a tool and guidance for advocacy” not just because of its findings, but also because of its participatory methodology. Gender activists “should learn to ask women what they need, before we begin programmes”, she said.
But Shelver and Nath point out that the women who participated in the project are not just victims. They are also “survivors who have challenged the structures and systems that have oppressed them all their lives”. The women use words such as “powerful”, “strong” and “happy” to describe themselves and say that living with HIV has turned them into “self-confident activists”.
Nomcebo has enlisted a lawyer to sue the hospital that sterilised her.
*Not their real names