In-depth: International Women's Day - Gender and HIV/AIDS
SWAZILAND: All about hope
Siphiwe Hlope of SWAPOL
JOHANNESBURG, 8 March 2004 (IRIN In-Depth) - Swaziland's most innovative and motivated HIV/AIDS mitigation programme has sprung from five traumatised, middle-aged HIV-positive women, and their efforts offer a blueprint for coping with the epidemic.
"We call our group Swaziland Positive Living [SWAPOL], and it was forged from the suffering our the founding members. That may be why people respond to what we are doing, and we are getting so many requests to help communities where HIV is rampant. We are not an NGO that works out of a plush office. We are people who know what it means to face discrimination and rejection, but who have the will to live," founding member Siphiwe Hlope told PlusNews.
She spoke at the edge of an extensive field where vegetables are grown to meet the nutritional needs of members living with HIV/AIDS, and which generate income to sustain a host of projects. The farm itself is a testament to the way the women's group has changed attitudes, as well as prolonged lives.
In an extraordinary breach of custom, the 11-hectare farm at Mahlangatsha, 40 km southeast of the capital Mbabane, was given to the women by local chiefs.
"Since time immemorial, only men have been given land by chiefs to cultivate for their families. But the chiefs saw how we were helping their communities, and we needed land to grow crops for our projects. This land was their vote of confidence in us," said Thelma Dlamini, who founded SWAPOL, along with Hlope, Nonhlanhla Dlamini, Elina Hltatshwako, and Gugu Mbata (who died last year).
All five women were HIV-positive; all had similar stories of rejection by their loved ones when their medical condition became known in a country where stigma still makes it difficult to admit one's HIV-positive status.
Hlope's experience was typical. "I wanted to continue my schooling. I was 39, and I had studied in Zambia from 1995 to 1998. It was all set that I get a scholarship, but a requirement was that I take a blood test. The results came back that I was HIV-positive. I was denied the scholarship. I was terribly disappointed, and I also had to understand the medical news," she explained.
"I went to tell my husband I was HIV-positive. We were at home, in the bedroom - we were just sitting and chatting. He asked me about school, because I was supposed to leave the next month. I told him I was no longer going; I told him why. There was a dark cloud inside that room.
"For almost 30 minutes he didn't say anything. I went into the kitchen to drink water. When I came back he asked me to say again what I said, as if he didn't understand it the first time. I told him again. I really needed his love and support, but he said, 'If you are HIV-positive, that means you are the one who has come home with the disease, because you were out of the country for a long time.' He blamed me," said Hlope.
"I never had an affair - he was trying to shift the blame from him to me. In the morning, he went to work without talking to me. He wouldn't eat the breakfast I prepared for him. He came in the evening, and he told me he was moving out. It was no answer if he was trying to escape HIV. He was just going to spread it by infecting others."
The five HIV-positive women from the rural area of Makanyane somehow found each other, despite an absence of HIV/AIDS support groups outside urban centres. As they shared their experiences, they decided it was time to act.
"We thought, 'Why can't we form an organisation for the women living with HIV/AIDS, so we can share our experiences, and educate our families?'" said Hlope. "We called ourselves Swaziland Positive Living, because life goes on even if you are HIV-positive."
SWAPOL was set up as a cooperative where members volunteer on income-generating projects. Half the profits are used to recapitalise projects, 25 percent is shared among the members, and the remaining 25 percent goes directly to HIV-positive people or AIDS patients in need of assistance.
The group has a sewing project, making school uniforms and tracksuits for schools that work with SWAPOL. The big farm at Mahlangatsha, about to yield its second harvest, provides food for child-headed households who have lost their parents to AIDS, while also producing vegetables for sale.
The women are encouraging HIV-positive people to establish small gardens next to their homes. Though measuring only three metres by one metre, the gardens can be managed by children or an ailing person, who often find that leaving their sickbed to do a little watering is therapeutic.
To get the project off the ground, the women approached the UN Children's Fund (UNICEF) in Swaziland in 2001, and won the support of the agency's representative, Alan Brody.
"These were rural, middle-aged women who wanted their own support group. At that time, at least 150,000 to 200,000 people were living with HIV, mostly unknowingly. We felt every community needed a support organisation, and we decided to give them some help by sponsoring information workshops in their areas, to get them going. It's like venture capital - you try to get something going because you think it has promise," Brody recalled.
From the initial meeting of three women at the UNICEF office, SWAPOL today has 400 members, including 50 men, in nine communities. "We open up our membership to anyone. Those who are HIV-positive are 250. The others are those who are affected by HIV, like parents who say their children are HIV-positive," said Hlope.
Fifty to 100 people usually attend SWAPOL community meetings. At a gathering PlusNews attended in a church at Sibovu, 80 people were being instructed on how to stay healthy and active while HIV-positive. Many middle-aged parents had children who were HIV-positive, and their apprehension was apparent, but the listeners were assured that the virus was not an immediate death sentence.
The topic of stigma and discrimination was also broached, and attitudes about traditional Swazi life were addressed. SWAPOL is against polygamy, which is legal in a country ruled by a king with eleven wives, because of the risk of spreading HIV.
After the meeting, some community members privately told SWAPOL representatives that they were HIV-positive, and asked for nutritional information and other assistance. Some people wanted to have a blood test arranged.
With growing funding from non-governmental sources and its own projects, SWAPOL has trained 30 caregivers and 30 counsellors to work in their communities. The caregivers assist with the material needs of families affected by HIV and AIDS.
"The counsellors are trained and busy, because more and more children are taking care of parents. They see their mothers dying, their fathers are dying. The counsellors talk to them. They assist people to learn their HIV status, communicate it to their loved ones, and give them advice on how to live," said Hlope.
"We are all about hard work, and hope. We are examples ourselves that if you are HIV-positive, you don't just curl up and wait to die. Life goes on, and there is no reason to be afraid," she said.
In a country with the world's second highest HIV-infection rate - close to 40 percent - and persistent denial about the disease, it is a message that needs to be heard.