In 2007, Tiwonge Gondwe was living in a village in northern Malawi. Her house had been recently burned down and her husband had died from AIDS leaving her with three sons under the age of ten. Now positive and desperate to build a life for herself and her young family, she appealed to her father for a piece of land on which to rebuild her home and start a small farm in order to provide food. But her father was adamant in his refusal. She, as a woman, could not own land.
Almost 60% of the estimated 910, 000 Malawians living with HIV are women. Good laws such as Malawi’s Gender Equality Bill have failed to protect HIV+ women from stigma and ensure access to quality medicines. HIV/AIDS has added another layer to the dynamics of inequality and violence for women in Malawi as both the “by-product and accelerator of poverty and discrimination” (Malawi Women Crossing the Line: Mobilising Women’s Resources for Health and Rights, Making Change Happen 4). This has kept the promise of universal access a distant reality, particularly for women in spite of influxes of financing and drugs from development actors and the Malawi government’s commitment to assuring access and quality healthcare for all.
In 2008, Tiwonge and other women in her community began to notice the changes caused by the widely-used antiretroviral treatment (ART) at the time, called D4T. The treatment contains stavudine, a highly toxic drug that can cause fatal lactic acidosis, especially in pregnant women—a condition that can inundate the bloodstream with lactic acid, crowding out oxygen in the blood and can result in death. Stavudine can also cause severe and fatal pancreatitis when combined without proper management with other HIV/AIDS treatments. An often dismissed impact with the drug shows that stavudine can also disfigure a woman’s body, including severe belly-swelling (as if pregnant), and severe loss of fat on the face, arms, legs and buttocks.
“The ARV package in Malawi is rotten pie,” Tiwonge noted at the time, “And it is the women who are eating the biggest chunk of that rotten pie because we outnumber men in population and also in infection statistics.” Women are often more likely to suffer more stigma and discrimination than men under these conditions as the drug causes visible physical changes and disfigurements impacting a Malawian women’s sense of beauty, fertility and sexuality.
The visible physical deformities caused by Stavudine led to stigma and discrimination. Since 2008, JASS has created safe spaces to give women like Tiwonge the opportunity to share experiences, identify common challenges and develop collective solutions.
Over time, Tiwonge began to realize that her body matters and that by activating the power within and building solidarity with other women, they can change their situation. In her own words, “It was JASS who came in and asked us what was burning in our hearts, and then we started addressing the issue of deformation from ARVs. JASS has taught us how to put our voices together for collective action in order to name and shame the government, as well as to lobby for better quality ARVs. We wanted our dignity back.” Equipped with more confidence and skills, Tiwonge went back to her community to mobilize the women in her district to raise their voices.
For Tiwonge, the disparity of the discrimination she and other women experienced in her community was no greater than with her own husband’s family due to her HIV status and the fact that she was a widow. “When a husband dies and the woman is left behind, there is a syndrome of saying that maybe the wife should be allowed to wear only one cloth [or change of clothes],” she shares. “The family will choose the colour that she has to wear and sometimes she must put a white mark on herself to show that she has lost a husband, and she must wear [those] same clothes for a year to show that she is in deep, constant mourning.”
This cultural tradition in Tiwonge’s community is one that demands that widows isolate themselves as a sign of fidelity and ‘proper’ mourning, “She has to eat on separate dishes—no one except the wife has to do this, and I began to ask myself why?”
Tiwonge did not allow this discrimination to destroy her. Refusing to back down, she confronted her village headman on some of the issues affecting women and widows in particular and eventually received permission to buy her own plot of land on which to build a home and a small-scale farm.
Tiwonge’s activism did not just stop with her own situation—she decided that she wanted to fight with other women to make even bigger positive change: “I believe in collective power. When you use collective power effectively it enables you to engage with duty bearers and you don’t fear. It empowers you when you are talking and you feel that there is nothing that can hinder you.”
Together with hundreds of other women from across Malawi and as a result of a 5-year organising and leadership-training effort supported by JASS and MANERELA+, the Our Bodies, Our Lives Campaign for Better ARVs was launched in 2012. Tiwonge led a delegation of 10 women to the Ministry of Health to demand a rollout of quality ARV treatment—a demand that the ministry answered by committing to a rollout of alternative medicine by July 2013. While this roll-out has not assured all Malawian women access to alternative ARVs and quality healthcare, women like Tiwonge are still at the forefront of this fight and it was a powerful step forward for all Malawians.
Today, Tiwonge calls herself a feminist activist. She is an outspoken leader in her community and the Our Bodies, Our Lives Campaign. Through organizing with women like Tiwonge, JASS has helped make visible the discrimination against HIV+ women, while amplifying their voices for inclusion in matters that affect their lives—facilitating a change in the ART regimen. There has been a shift in that Malawian civil society has come to recognize that HIV+ women count and deserve to live a life with dignity. For Tiwonge, it all started with her realizing her own power to change her situation and bringing the women of her community along with her. As Tiwonge concludes, “I am not an educated woman like the rest of you. I am an ordinary woman from the village and the first time I met JASS I could not speak one word of English.... Look at me now…I represent myself and speak for myself. This is a huge change. JASS has given me a second life, a good one too.”