Walter is gloriously alive.
He’s bold, he’s funny, he commands your attention. He’s the live wire of the group. And he’s HIV positive.
Once a week, Walter and other HIV positive people meet for their support group at Lithanza, a non-profit organization operating in Wattville, South Africa. They talk to each other — openly and freely — about living with HIV.
“Sometimes people are afraid and scared,” Walter says. “They don’t know there are such places where they can share and talk. We tell them — come join us next week. It’s confidential. Everyone is free to talk and discuss their feelings.”
That might not sound like a big deal. But in townships throughout South Africa, it’s not always possible to receive this kind of community-level HIV support.
South African non-profit organizations (NPOs) are funded by the Department of Social Development (DSD) to provide services for orphans and vulnerable children and their families who are infected and/or affected by HIV and AIDS. The Government Capacity Building and Support (GCBS) program, funded by USAID/PEPFAR and implemented by Pact, supports DSD in that mandate.
Despite their responsibility to provide community-level care, many NPOs simply don’t have the resources or the expertise to do it well. They want to help the abused woman trapped in a terrible relationship. They want to support the rape victim with suicidal thoughts. They desperately want to give hope to the unwed, HIV positive, teenaged mother.
But providing this level of support isn’t simply a matter of goodwill and pure intentions — you need training and expertise. You need access to information and ongoing professional development. You need to be aware of other community organizations that are providing services out of your scope in order to be effective with your referrals. You need support.
That’s where GCBS comes in.
GCBS staff work directly with NPOs in the community. They build relationships and provide targeted trainings to increase staff capacity. They reduce the burden on NPOs by taking on clients who are most in need of one-on-one support. They provide support to grandparents who are taking care of children orphaned by HIV/AIDS. They also build professional relationships to enhance the referral system and follow up to ensure that clients receive the service they need.
Lorraine, the GCBS social worker assigned to support Lithanza, has a number of one-on-one therapeutic care recipients who she wants to visit weekly. But sometimes she’s stretched too thin — there’s too much need across the 17 NPOs that she supports.
Lorraine’s days are controlled by referrals she receives from NPOs. “I plan weekly, but I can’t follow my plan to the core,” she says. “If something comes up, I adjust. The needs of the clients determine where I go.”
But she can’t be everywhere at once. That’s why most of Lorraine’s clients have her cell phone number and can call at any reasonable time.
Thandiwe* came to Lithanza for support and met Lorraine. She’s in such obvious pain that you just want to hug her, but there’s a fragility to her that stops you. She’s at that point — so vulnerable and scarred — that even an act of compassion could cause her pain. She’s quiet when she speaks. “I have a big wound,” she says, “but over time it’s getting smaller. It’s not healed, but…”
She trails off. Lorraine holds her hand across the table and reassures her.
“As much as she needs me — if there’s a challenge, she calls me and I’m there for her.”
Lorraine’s support save Thandiwe’s life.
“Working with Lorraine one-on-one has helped me see things from a different perspective,” Thandiwe says. “Being in a session, we can explore different avenues and I can decide to choose a different avenue than I thought I would. I’m proud because I was so much in trouble and in pain and I thought that killing myself was the only option. But I’m proud that I am still here and alive.”
Thandiwe looks at Lorraine. She’s both grave and grateful. “I’m glad that whenever I need you, you’re there. You’re always able to assist me and provide with me guidance.”
Thandiwe illustrates the challenge Lorraine and NPOs across South Africa face on a daily basis. People are in need. People are suffering. And the support systems are stretched way, way too thin — good people, good mothers, good fathers, good kids inevitably slip through the cracks.
Thandiwe, a mother to four children, is getting stronger, slowly, with support from Lorraine. She’s still struggling, but her wound is healing and she’s on her way to being able to be the mother her children need.
When Thalita, the director of Lithanza, started the organization in 2006, she was mostly focused on helping school-aged kids. Thalita is a teacher by training. She watched teens graduate, leave home and come to Johannesburg only to flounder. They couldn’t adjust and struggled to find work. They were lost, so they’d turn to drugs and gangs, and many contracted HIV. She watched as their lives, once promising and hopeful, took on a completely different trajectory.
Thalita wanted to help more directly — and thus Lithanza was born. At first, she only worked with schools, focusing directly on the children. Over time, Thalita saw that the scope of the need was well beyond the kids alone. She realized that in order to help the kids, she had to also help their parents, their grandparents, their caregivers, and other people in their lives living with HIV and AIDS. She realized that it’s about the entire circle of support. It’s about the network the kids rely on.
Right now, Lithanza teaches community members about HIV. But Thalita knows the organization needs to evolve to have the impact she dreams of having. “It’s great that they learn about HIV, but they need real skills,” she says. “That’s what can change their lives. That’s how we change their world.”
DSD is working hard to meet these needs and to support organizations like Lithanza. But the DSD office that Lithanza relies on is far away. When Lorraine and other GCBS staff like her work directly with NPOs at the community level, they shorten that distance and provide a level of care that allows Lithanza to more fully support the community.
And Lithanza is trying to support that community. The support group that Walter attends is one element. They’ve been meeting every Tuesday since 2014. Not only do they support each other, they also do outreach and awareness raising in the community to welcome others to the group and address stigma and discrimination.
Ntomfuthi is another member of the support group. She’s a tiny woman with strength etched on her face. Her diagnosis rocked her to the core. She internalized every stigma, every doubt, every insecurity about the disease and what people think it means. She could barely face the world. Every look, every comment, every passing glace felt like a judgement and a condemnation: You are positive.
Without the group, she’s not sure where she would be.
“When I found my status I locked myself in my room and when I came out, I felt like all people could see my disease and know I had it,” Ntomfuthi says. “Now I know I am just like everyone else. The information [I learned in the group] boosted my confidence and helped me accept my status.”
Imagine that time for her. She’s lost and struggling, wrestling with her own internal stigma while trying to be a parent, to support her children. And not just that — while trying to come to terms with being vulnerable enough to ask her older, more educated children for help with her medication schedule, and understanding how to take care of herself.
“As HIV positive parents, it’s hard to tell our children our status,” she says. “But with the support from the group, we can tell our kids so that they can support us. They can help us to take our medicine. For those not ready to tell their children, other group members will call you to remind you to take your meds.”
Ntombenhle, the support group facilitator, listens intently as each person speaks. She asks them to expand on their thoughts when necessary and directs the conversation down a different path when someone seems anxious. She worked with Lithanza from 2007 to 2009, and then returned again in early 2016. It’s instantly clear that she’s a good facilitator and a calming presence. What’s not instantly clear is that Ntombenhle has been on the other side. She was once in this support group.
“I like to work with people,” she says. “Especially the ones who seems like me. I’m HIV positive. I like to work with other people and teach them about HIV.
“I lost a child in 2001. I started going to support groups after I lost the child. And started with a [Lithanza] group in 2006. I said to Thalita, ‘I am here, I’m a single parent. I want a job and I want my child to survive.’”
Thalita hired her.
Ntombenhle is a role model for others in the group.
“You see me. I’m good, I eat healthy, I use a condom. You have HIV — forget about that. You must know what you want in your life. Join the support group. Know your status. You must use a condom to save your life. Stay healthy. Exercise.”
For Tozile, another support group member, the support of Ntombenhle and others in the group means empowerment.
“We learn how HIV affects us,” Tozile says. “How we can identify infected people, what to use when you are diagnosed, like condoms. As we are seated here, we are empowered not to shy away from our disease. We are empowered to be free.”
The support group members are empowered through knowledge — learning about how alcohol, drugs and traditional medicines might impact their treatment. Learning how to take their medications. Learning how to stay healthy.
They are also empowered to be mentors, reaching out to other community members to raise awareness and help others thrive. They are empowered because they know their status and they own it.
As Walter puts it, Walter isn’t HIV. Walter is Walter, so vibrantly and gloriously alive. He raises his arms and his voice, almost laughing as he explains, “I’m proud that I know my status. I’m free and I’m more than my status. That’s Walter!”
Walter and the others in the Lithanza support group are simply people. Yes, they are people living with HIV. But they aren’t living in a vacuum: They are mothers, fathers, siblings, friends and lovers. They are people with relationships and hopes and dreams. They are people who others depend on. They are people who are loved.
They are patients, but they are also caregivers.
When they are empowered to live full, healthy lives, the lives of their children and loved ones will be fuller and healthier as a result. It’s the circle of support. And it’s what NPOs like Lithanza and GCBS staff like Lorraine are working to strengthen every single day.
*Thandiwe’s name was changed for this story at her request to protect her identity.
Words and photos by Maggie Dougherty.