That loving spirit – Juliet Mweetwa, Zambia

JULIET MWEETWA, aged 27, was diagnosed with HIV in January 2003. Since then she has played an active role in educating the community of her small town, Kalomo, in southern Zambia. We followed her through three days of her busy life.

Monday morning Juliet Mweetwa is one of 30 activists meeting in the dingy conference room of Kalomo’s only hotel. They are discussing issues of stigma and discrimination, which are barriers to HIV testing.

"People are afraid to be tested in case they are found to be HIV positive," says Juliet. "They fear divorce; they fear that their families will abandon them. Most of all, they are afraid that they will die immediately."

As she speaks, she bangs her hand on the table and her glossy braids fly. As one of two openly positive people in the group, Juliet has a special contribution to make. This is her own story as much as anybody else’s.

She is an active participant in HIV/AIDS events in the district. This particular one is a thematic meeting organised by Mumuni, the lead non-governmental organisation (NGO) for voluntary counselling and testing (VCT) in the district. She works with the group until midday, when she has agreed to meet us at her home to tell her story.

Juliet lives in a single room of a house shared by several families in a dusty corner of the compound. This room is the family’s bedroom, living room and kitchen, and usually accommodates four children – two of her own and two young orphans she met during an outreach visit. Her mother visited recently, saw how she struggled to feed the children, and whisked them off to her homestead in a distant village. So life is easier now, but Juliet is lost without her little ones.

Juliet’s life with HIV began towards the end of 2002, when her husband divorced her and left her with their two small children and no money. There had been many signs that all was not well, and she was very afraid that she had HIV. She was immobilised by depression and spent long hours just sitting in her room. Then she saw a poster advertising training at the DAPP Hope Station and went there for help. Soon she was enrolled in their Positive Living Advocacy course – a six-month part-time course that trains HIV-positive people in healthy living. This gave her the courage to go for VCT. The result was… positive.

"For the first two weeks it was very difficult. I would just look at my children and cry." Clinging to the hope of an initial misdiagnosis, Juliet tested and re-tested, but the results came back positive every time.

"Then I decided to become an advocate for positive living. I knew I could have that loving spirit to go into the community. It has helped me to help the chronically ill."

Since then, Juliet has not looked back. She was chosen to join the care and prevention team, whose members visit sick people in their homes. She has addressed church congregations and worked with local NGOs to mobilise people into the VCT programme. Juliet has never been sick. "We promote healthy living and tell people about affordable remedies. We promote income-generating projects and encourage people to garden so that they can grow their own healthy foods." Tuesday Juliet is with the Mumuni mobile VCT team at an isolated rural health post. The journey from Kalomo to Sikwaazwa village has taken several hours and the sun is already high in the sky. Juliet is addressing a crowd of villagers seated on log benches under the trees.

"Pay attention! Now I want to ask you, who has seen someone with AIDS?"

A few people put up their hands. "Yes," they shout, "We have seen them at the hospital."

"And what did they look like?"

"They were thin…" "They had sores…" "They looked sick…" "The skin will change".

Everyone has an observation. Everyone has some or other sure sign by which to distinguish the HIV positive from the lucky ones.

But Juliet has a surprise for them. "It’s not that easy," she says. "You can’t tell by looking. Look at me."

The crowd gasps as she turns around and wiggles her bum.

"I am positive, and you can see that I am healthy and I can do everything that you can do. There is hope after VCT. I am not ashamed. You can live well after being diagnosed positive."

Juliet tells the group her name. Then she tells them her story. And finally she asks for questions. They come thick and fast – men and women, old and young, all have things to ask. They do not mince their words. The most insistent questioner is a young woman who is determined to discover if Juliet still has an active sex life.

"Do you still have feelings for men?" she asks. Yes, says Juliet, she does, but she does not have a boyfriend.

"But what would you do if a handsome man proposes?"

"I would not succumb. I would tell him I am positive."

"But what if you really, really like him?"

"I could use a safe sex method," says Juliet, "but I would rather explain that I am positive, and abstain."

An anxious young man wants to know if he will get HIV even if he does not ejaculate. Another asks if dry sex is a cause of HIV. Juliet responds to these questions with detailed explanations, covering everything from body fluids to sexual practices and their relevance to HIV. Whoever thought that village people avoid talking about sex was seriously mistaken.

People want to know what she eats to stay healthy; does she take anti-retroviral drugs? She answers each question simply but comprehensively. Finally, the questions dry up and Juliet is released. A Mumuni counsellor runs over to Juliet and hugs her. ‘It’s hard for her to do this,’ says the counsellor.

But Juliet doesn’t really agree: she loves these talks, she thrives on the contact, she feels appreciated and useful. Wednesday 5am Exhausted by the previous day, Juliet is sleeping when friends arrive to take her to visit her children, a three-hour car journey away.

As they bump down the rutted road to the village, the conversation turns to her mother. Although other family members know about her status, Juliet has yet to tell her mother that she is positive.

"Mamma has BP [high blood pressure]," she says. "I am afraid it will make her ill."

When we arrive at the homestead, two ragged girls emerge from a hut and run to Juliet, their arms outstretched; and laughing. They are her baby sister and five-year-old daughter. Her brothers and her mother, who is carrying Juliet’s two-year-old son Simbeleko, soon follow. Simbeleko clutches his mother.

Juliet speaks to him in English. "Do you want to kiss mama?" He complies with solemn joy.

Simbeleko means ‘miracle’; his was a difficult birth and he has been below the fifth percentile in weight ever since.

Juliet’s eldest brother is the only family member who has a job in town. He sends money home, but otherwise the family live on the corn and cowpeas they scratch from the dry earth. They sell a small surplus of vegetables and fruit at the market. Before the droughts, which these years come again and again, they grew groundnuts, but now the yield is poor.

Though happy to be home, Juliet will stay just a few days before returning to town, and to her work as a positive living advocate. Though it pays no money, it gives essential meaning to her life.

"I realise that I get relief from talking to people about my HIV status," she says. "The more I talk, the better I cope. When I give a testimony I do see people going for VCT. So through that I am coping with my situation, even though it is hard. I am trying my level best to lead the way for the community."