Inspirational: Window to HIV reality – experiencing Yabonga, a lifeline for 1,200 kids

It took a year and a half to close the loop on my Yabonga experience – but as you’ll hear in this absorbing podcast, it was worth the wait. After a London interview in November 2018 with Ursel Barnes, co-founder of this extraordinary organisation, she offered to show me what happens on the ground. That happened last week when she and husband David took us to see a couple of Yabonga’s operations in Khayelitsha, township of a million souls established during apartheid to serve the city of Cape Town. Ursel and Ulpha Robertson started Yabonga in 1998 to establish after-school safe houses for HIV-affected township children. Twenty two years later, their creation provides a daily refuge for 1,200 vulnerable children, and has helped literally hundreds graduate into contributing members of society. This inspirational podcast opens a window into their world. – Alec Hogg

I engaged with some extraordinary people during our three years in London. Among them, Ursel Barnes, who I interviewed in November 2018 about an organisation called Yabonga. Yabonga means ‘thank you’ in isiZulu and Xhosa. it is a focused organisation that looks after vulnerable children, specifically those who have been affected by HIV/AIDS. Ursel, who is a PhD in Finance, co-founded a hedge fund and retired early, saw around her in her new home in Cape Town – she is talking to me from Germany – that there were great contrasts of wealth on the one hand and great poverty on the other. She met a woman who had a backyard creche for HIV-affected children. Well, today, Yabonga has grown into an organisation of formidable proportions that looks after 1,200 children on a daily basis, giving them an opportunity to live not just a normal life, but perhaps one that could be extraordinary as well. As I was in Cape Town last week, attending the opening of the Neuroscience Institute at UCT, which Ursel is also intimately involved in. We set up a visit into Khayelitsha to go and have a look at Yabonga’s operations on the ground. The adventure began at a small house opposite a railway station.

My name is Patronia Luzipho. I am a senior supervisor here at Kuyasa Centre. This is Sam Makalema. We call her the committee mother and Head Counsellor. This is the group 5 to 8. They are working here in this group.

So, you say aged 5 to 8.

This is 5 to 8 age group. We have 9 to 12 that side, and 13 to 16 that side.

And how many children are here with you in the afternoons?

There are 25 children here. They come from a school in this community. They are here in this community, so they attend school in the same community where they are living. So, they go to school and come here to attend the group.

And what are they doing now? 

Now they are doing crayoning. 

Goeiemore bantwana!

Goeie more Tata!

David, before this crayoning that they are doing, they were doing the name spelling. We were writing the spelling, now they are finished with that, they are doing crayoning. And that young lady is doing the cake. We have a child, Yoli, it is his birthday today, so she volunteered to make a cake for him.

Wow! And do they sing Happy Birthday? 

Yes they did sing for him.

Do they want to sing Happy Birthday for David?

Yes they want to sing Happy Birthday for them. Yes can we please sing? Tell them that it’s David.

David and Ursel Barnes

That singing of Happy Birthday was for Ursel’s husband, David, what a way to celebrate your birthday by going into, well see, people who are less privileged than you are. But that’s David Barnes, as I think you’ll realise when you get to listen to the interview that I did with him, a very rare one, by the way, which is elsewhere in the podcast offerings of BizNews Radio. There’s quite a lot of singing from our Yabonga children, which is really uplifting as the whole experience was, but there’s also some pretty serious messaging.

On Mondays it’s our Sabbath group, they are sitting here and sharing their personal stories with the child counsellor. The committee mother is not in and the child counsellor that is here, listening to their stories and their feelings, you know the emotional feelings. Then on Tuesday, we have the lesson, that’s the Life Skills and the sport.

She is doing the poem about child abuse and hunger, she is doing the poem about HIV/AIDS.

All of Yabonga’s kids are affected by HIV in some way, many of them being HIV positive themselves. But next, it was on to the centre that Yabonga has built and is branded very strongly. We met another of the day mothers who told us her story.

I started with Yabonga as a client, I met with one of Yabonga staff at the clinic in Weltevreden and she said they were inviting us to Cycles of Support. So I joined Cycles of Support. And from Cycles of Support I attended training, which was two weeks training. Then I volunteered for a month and I started in July 2017. So when I started here I started as a child counsellor for a period of three weeks and so they saw my qualification, because I have a Social Auxilliary Work qualification. So I went to the Respite Unit, they moved it here, it was in Plumstead back then. So I worked there as a Respite Coordinator. And then from there, I’ve been coordinating in all centres in Weltevreden and Samora. And then last year, I was Area Supervisor at Crossroad Centre and then in 2020, I moved to Khayelitsha, which is our Children’s Centre as a Ccntre manager and overseeing the respiting.

Is HIV still a big problem?

Yes it is a big problem because the stigma is still there, the information is being given to people, the people are aware that there are ARVs in clinics, but the stigma is the issue in regards to HIV because it’s not easy for people to share their status, because they become isolated by their family members even on the street the people call them names. So it is still a challenge. Though the information of HIV is being given people are aware that HIV is not killing, HIV is a disease, that HIV has ARVs which are boosting the immune system and the person can still live longer. But the issue is the stigma because of how HIV was being addressed when it was discovered in South Africa. It was addressed as a killer disease and it was addressed as a disease that is not from a human being. So that is why the people are still having stigmatisation regarding HIV. 

Such are the unintended consequences of ignorance at the highest levels. We listen to another story from one of the people who work every day in this field. And it’s interesting to hear that coronavirus is certainly not just in the news headlines at a top level.

Is corona an issue here. Have you started talking about corona?

Yes, it’s been an issue each and every day, even to our staff. We’ve been dealing with fears. People are so fearful about corona and we’ve been hearing over the news as well that there is no cure for it yet, it will be discovered maybe after six months so people have been so fearful and sometimes you can see a person is kind of joking but it’s not like a joke, it’s a fear that is coming out, so it is a challenge, because just today some of the staff they were asking me that they heard over the news that people are in closed off houses, they mustn’t walk around, so they were asking what about us? We’re working with a lot of children, we have 25 children in the group and the staff as well to teach because the word is being spread but the thing is, I’m not quite sure if they know what it is. Exactly. Yeah, but they do know about corona because just a few weeks ago it was about the pilchards, then just after the pilchards it become about corona, so the children were refusing to take pilchards because there was some kind of worm that was in the pilchards. So we have to deal with that challenge. And when we pass through it and now we face Corona.

In our schools there’s been news already. They were given the information already in our schools about corona? What are the symptoms of corona and what to do so that you cannot be infected so easily.

Real world problems, real, real issues. Good news, though, about corona being spoken about and discussed at township schools and these are schools that are way off the radar of the normal news flow. Then came a surprise for David, Ursel’s husband, as about 200 children at the centre stood together to serenade him to celebrate his birthday.

Speech, speech!

First of all, thank you very much for your very beautiful singing and the biggest gift for me on my birthday is to see your happy faces. So thank you very, very much.

After the singing and a little game of soccer, we went off to an area that they call the Respite, which is a very special unit for extremely vulnerable children who come there and stay for six weeks.

The mothers refuse to tell their children about the status because they are scared of how the other children are going treat them and if other children are going to accept them, and then how they will judge them because as we said, HIV is still a stigma from other adults and worse when it comes to children. Sometimes they can even isolate them. Not even want to touch their food or playing with them. So the parents have that fear of how their children will be when they disclose their status. And some parents, are in denial that their children are living with HIV. Because I believe that when a child reaches 10 years, that child can keep that status on herself. But the mother’s they still refuse to disclose even when the child is 10 years old, when the child reaches that age, it is so difficult for them to accept the medication because they want to know the reason, “Why am I taking this medication?” Back then you said, “It was a headache. And then I’m no longer feeling a headache. I’m no longer seeing headache signs.” And then you said it’s asthma, but, “I can see people with asthma, I don’t see myself having asthma.” So those are the challenges that we are dealing with. And so we are taking those children to Respite, just to educate them and to support them about the importance of taking medication, no matter which medication as we are not allowed to disclose to a child that they are HIV positive. But our part as the Respite Unit, we are just here to support a child, giving education about the importance of taking medication, no matter which medication, and also to help the child to realise what time to take a medication. And what is the importance of taking medication. And in a funny way, we are also involving them, engaging them, because we are also taking medication. So when you kind of show a child, I’m also taking medication. So you’re empowering that child that they are not alone taking this medication. So that’s the only role that we are playing. Because we really can’t disclose to a child. And then what we are doing secondly, we support the mother and then we give her knowledge, how important it is to disclose to a child. When the mother is ready, that’s when you sit her down with the child and then disclose.

You get the feeling that Yabonga does incredible work for the kids when they’re growing up, but what happens later? What happens once they have got to an age where they need to start fending for themselves? Well Ursel chipped in here as well.

We have a program which we call a Gap Year Student Program. So some of our children that didn’t get a school, we enrol them into a Gap Year Student Program. And then that’s where we develop them, skills on how to go to college and apply to the university. We have one story of a guy who was our OVC who is now a social worker. He started here young and then he became a teenager and then he became a youth. And then he went onto a Gap Program and applied for university. He studied further and now has became a social worker

We haven’t had doctors and lawyers and actually it’s an expectation that we try to cut back on because  if you say to them, “What do you want to be?” 

“Oh, we want to be a pilot or lawyer or professor.” And they’re unrealistic goals. So we try to give them vocational work where they actually find work and make a living. And that is working. Quite a few go into social work, which is really nice because they understand what other community members go through.

And the HIV status as the children get older, how do they handle that?

It is difficult, more for 13 to 16 year-olds because some of them when they discover that they are HIV positive, they kind of feel ashamed of themselves, and then they end up leaving the program, because they feel like in most communities, they know Yabonga as a brand of HIV and living people. So now, when they reach that stage of 13 years, they become ashamed of themselves. It’s like they are kind of being disclosed already in the community. So we’re having challenges when it comes to age 13 to 16 years.

Well, thank you for joining us on this journey, it was really wonderful to have you there.  It’s a lot more touching from the heart to actually show you what it feels like and always feels like when you see the eyes of the children, it just transforms the whole experience. So the the guy you just met was the son of our maid who unfortunately passed away of AIDS.

When we left her behind, when we went to the UK and I still feel very sad that I wasn’t able to save her. But he is now a role model for the boys. He’s 23. He is just finishing a tourism degree and is a real person to look up to for the boys here who often have very dysfunctional role models in their families. Fathers that were absent, who they might have never met, uncles who are drinking away the various children’s grants and in a strong maternal culture, it’s very important for the kids to have male role models. So you were playing soccer, which I was very impressed. Thank you for joining us. 

And David’s birthday, was this the whole plan?

That was a surprise to me. So it’s David’s birthday today and it was a sweet surprise that they’re trying to sing but it was an unplanned sweet surprise. They do want to give back, always very touching. And I think they like to include us. Often we feel weird and it makes us uncomfortable, but it’s really our thing. They are proud to show us they are very happy to include us into their lives and they’re curious about us. And all these years, I’ve never felt that there is resentment, there might not be an understanding, there might be a puzzlement of where we come from, but never any resentment. It’s more that it makes us feel awkward to go into experience their world than the other way around.

And when they finish, what happens to the children who go through the program, and when do they leave? And what do they do afterwards? 

So we try with older children to help them find further education. There is a lot of fluctuation and coming and going throughout the year. So we have some children that would have been with us for 10/12 years and one or two success stories where we have a social worker who finished. But mainly children go back to the Eastern Cape, they get moved around. They sometimes leave the programs when they’re teenagers because of the stigma around being associated with an HIV organisation. Thats the reality and we give them hope. And often they come back years later. We have a director on our board, who was a client. She contacted me on Instagram and said, you know, in 2002. Do you remember when you brought your Chinese master out and we practiced Qigong together and you taught me how to meditate and you saved my life and I’ll always be grateful for that. And then we make contact again, and she now works for the government. I think the Ministry of Health and is a director for us on board level. So all those stories are you know, are very rewarding.