In July 2012, the African Women’s Development Fund (AWDF) supported Prudence Mabele, Executive Director of the Positive Women’s Network in South Africa to attend the XIX International AIDS conference in Washington D.C. in the United States of America. Under AWDF’s Solidarity Fund the organisation supports existing grantees partner to “…engage in activities which promote learning and the sharing of experiences on a local, national and international level”.

Prior to the conference, Ms Mabele attended two pre conference events: a 2 day conference organised by the Global Network Of People Living with HIV and NERELA’s pre conference organised by Religious leaders living with HIV.

During the conference, Ms Mabele participated in a plenary session on the theme ‘Collaborating Across Borders to Advance the Health of Women’, where she used the personal story of a PWN member to illustrate the gendered aspect of HIV and AIDS.The story is shared in full below:

 

Monica Modise died at the young age of 35. She left behind two daughters, Nomsa (17) and Zodwa (15), as well as a four-year old granddaughter, Zintle.

In 2005, Monica Modise was diagnosed HIV positive. It came to her as a shock. She was married to her husband, had been faithful in her marriage, and so had no reason to suspect that she would contract HIV. Her husband died in 2007 of AIDS related causes.

Monica was not employed, nor did she have the right educational qualifications or skills for the employment market. With limited options to make a means, she moved with her two daughters into her parental home then headed by her older brother, Mandla.

Moving back to her childhood home would prove to be a horrifying experience for Monica and her daughters. Unbeknownst to Monica, her brother, the uncle to her daughters had begun raping Nomsa on a regular basis. She was 13. She discovered this violation when Nomsa became pregnant. When Monica asked Nomsa why she had not told her about what was happening, Nomsa replied that her uncle had threatened to evict them from the home if she even thought of telling anyone. Monica was trapped. Without financial means, information, or support from other relatives or friends, she did not know where to go or who to turn to. They continued living with her brother, who now openly continued his criminal behaviour knowing that his sister had no alternatives.

It was through a PWN door-to-door campaign that Monica learned about living with HIV, support groups, counselling sessions, information about health facilities and people who she could turn to. Monica started attending one of PWN’s support groups and confided in the support group leader, who after hearing the story opened her home to Monica and her daughters.

At last, they had a place of safety. Baby Zintle was born healthy and in a place of safety. She escaped the nightmare that her mother, aunt and grandmother had lived through.

It was only in the place of safety that Monica could reflect and try to make sense of what had happened. She had lived in crisis management mode, never having a chance to examine her life on so many levels: discovering she is HIV positive, how to live with HIV, discovering her husband’s deceit, mourning the death of her husband, being left destitute, having to move back to her childhood home, having to negotiate living with her brother, finding out her daughter has been sexually violated, finding out her daughter is having a child by her uncle, having to find a way out of her living situation … With her stipend from PWN, she was able to take care of some of her basic needs and regain some sense of independence.

It took time for Monica to regain her strength and deal with depression, sadness, anger, disappointment, disillusionment, guilt and loss. Through the support groups and counselling, she built her strength to the point where she was able to report her own brother to the police and pursue the justice she and her daughters deserved. Upon hearing of the police case being filed, her brother fled their home and went to hide in the rural areas.

Monica followed up on the police case with little success. There was no follow-through by the police, the case was eventually dropped without explanation.

Monica became an active member of PWN. She campaigned, she counselled, she did all she could to provide women with the information she did not have access to. She often said that had she known what was out there in terms of support, she would not have made the decisions she had. But we encouraged her not to blame herself for what she did not know.

Monica died in January 2012. It was too soon, but at least she was able to make a difference in the lives of her daughters and granddaughter.

The South African Constitution is often mentioned as one of the best constitutions in the world for the rights it guarantees and protects its citizens. In terms of our policies, we can also be proud to have legislation that is progressive and seeks to serve the interest of all those who live in South Africa to the best of the nation’s ability.

However, it is unfortunate that with all the best policies and Constitutions in the world, when policy meets people it fails to live up to its promise. The story of Monica is one of many examples that demonstrate that somewhere we are missing the point.

When we look at HIV/AIDS through a gendered lens, then we can identify three main areas that cover the concerns that women and girls have to contend with:

Gender inequality and poverty

Rights to sexual autonomy and HIV

Rights to bodily integrity and HIV

 

1. Gender inequality and poverty

‘Women’s limited access to and control over assets and resources as well as the gender division of labour in the household increases their vulnerability to HIV and at the same time makes these conditions for women and girls living with HIV worse.’

In the case of Monica – and other women in her position

• She found out about her status when her husband got sick
• She had to look after her sick husband and then look after herself
• She had to start treatment
• She had to deal with her husband’s death
• She had to deal with finding a home and a means of survival
• Having moved in with her brother, she had to negotiate living in ‘his’ space
• She had to then deal with her daughter being raped
• She had to deal with her daughter’s pregnancy from her uncle
• She had to find a new home for her family

All these point to women and girls being extremely vulnerable. When women and girls do not have the security of access and control over assets and resources, it increases insecurity and vulnerability of the person. Also, even though the woman is sick as well, she still has to take care of the husband, and in many instances neglect herself and her children.

2. Rights to sexual autonomy and HIV

‘In most societies, women and girls, as compared to men and boys, face further restrictions on their sexual autonomy and bodily integrity. Women’s and girls’ inability to make sexual and reproductive choices free from discrimination, coercion or violence, as well as their inability to access and use information and products such as condoms, contraceptives, safe and legal abortion, post-exposure prophylaxis (PEP), etc. Such restrictions occur: at home, where women may not be able to negotiate safe sex; in communities and public spaces, where condoms or comprehensive sexuality education may be banned or unaffordable; and in health care settings, where women and girls living with HIV may be coercively sterilised or denied contraceptive information or products.’

In the case of Monica’s daughter Nomsa – and many other girls in her position

• Nomsa’s bodily integrity was violated by a member of the family
• Monica and the daughters were so embarrassed by the pregnancy that they did not have the courage to access health facilities due to stigma and discrimination
• Because of not accessing health facilities, they were not informed about the options available to them from PEP, to safe and legal abortion, and general well-being
• Nomsa did not have control or choice over her sexual and reproductive health
• Nomsa’s physical health was compromised because of being pregnant at a young age
• Nomsa had to drop out of school – she did return to complete high school
• Nomsa’s sexual interest and pleasure as an adult will be affected
• Nomsa’s exposure to HIV
• Nomsa’s access to justice was denied as the docket was closed without reasons provided

With Nomsa’s exposure to sex and sexuality in such a violent manner, she’s been ripped of experience sex as a positive experience. It will take considerable time and counselling for her to work through her experience. The restrictions placed on her sexual autonomy and bodily integrity reinforce discriminatory and patriarchal norms against women and girls.

3. Rights to bodily integrity and HIV

Gender based violence is a violation of human rights and impacts on people’s health and well being as well as inhibits their freedom of movement, ability to access education, employment, and political participation. The threats to bodily integrity and gender based violence hamper women’s and girls’ ability to prevent HIV – just as disclosure of HIV positive status may increase their vulnerability to violence. Harmful cultural and traditional practices that control women’s and girls’ sexual autonomy and bodily integrity, such as female genital mutilation, widow cleansing, property and spousal inheritance, early and forced marriages, and polygamy and virginity testing also exacerbate women’s vulnerability to HIV infection.

Monica’s story is in many ways a story of gender based violence

The violation of Monica and her daughters’ basic rights to bodily integrity and sexual autonomy are self-evident

The impact on their mental, physical and emotional well-being will remain with them through out their lives

Lack of financial independence restricted their freedom of movement and they were forced into a situation of danger

Lack of access to information and resources meant that Monica was not able to take advantage of social and health facilities available to her

The combination of all these factors place women and girls in high risk situations, and as seen through the live of Monica, the vulnerability to HIV infection is high. Without their mother, the girls have to negotiate their way through life in a manner that no child should have to. But it is through the work of support groups and counsellors that we seek to make a meaningful difference in the lives of women and girls in South Africa.

Conclusion

• Women are not a homogenous group. This principle must inform the policies and programmes that lead to the implementation of gender equality.

• Women’s rights should be seen as human rights.

• As NGOs we need to monitor and evaluate the work the we perform in the field, so that we can reduce the vulnerability to social injustice such as poverty, violence against women and girls, and HIV/AIDS.

• We need to realise that all these are cross-sectoral actions on cross-cutting issues such the girl-child, violence against women, HIV/AIDS, and the need for collaboration among partners is important.

• We must continue to work network with organisations such as the African Feminist Forum that works with organisations across the African continent towards achieving equality for women.

• We must continue to collaborate with women’s organisations in Africa but also outside of Africa to address the social and health challenges.

• We must continue to use women’s rights approach in the work that we do.

• We must look at existing instruments like CEDAW and implement the protocols. Regionally in Africa we have the African Women’s Decade 2010 – 2020 (AU) with its protocols, or the Agenda for Accelerated Country Action for Women, Girls, Gender Equality and HIV.