Stories from the front – AIDS and children in South Africa

AIDS orphan painting
AIDS orphan painting

13 million children in Africa have lost their mother or father or both parents to AIDS. In South Africa alone, 5 million people are infected with the HIV virus. KwaZulu Natal is the province with the highest infection rates, and the largest number of orphans. These are some stories from the AIDS front, stories about how people are trying to cope with the growing number of orphans.

Photos: Eric Beauchemin

Original broadcast: December 2001

Transcript

Radio Netherlands, the Dutch International Service, presents “Stories from the Front: AIDS & children in South Africa”. The programme is produced by Eric Beauchemin.

Oh well, I’m a fun person. I like going places, meeting new people and just being myself. EB: And what are the problems you face in your life? Right now, it’s the loss of my mother and my granny and my brother’s illness, ja. EB: How did you lose your mother? She died of AIDS. She was sick for a long time, but we didn’t know what was wrong with her. She was getting all kinds of infections and illnesses. And the only way I know that she died of AIDS is because my brother has the HIV virus in him.

13 million children in Africa have lost their mother or father or both parents to AIDS. In South Africa alone, 5 million people are infected with the HIV virus. KwaZulu Natal is the province with the highest infection rates, and the largest number of orphans. These are some stories from the AIDS front, stories about how people are trying to cope with the growing number of orphans. It’s also the story of 14-year-old Cassidy.

Cassidy, 14 years old
Cassidy

She started getting weak, and she started losing weight, you know. She used to have these swollen glands, and she used to cough all the time. Just always weak, you know. Then she started getting this infection called shingles, ja, you probably know it. Ja, she had it. She was really sick, illnesses and she couldn’t get the proper medication. We used to go to the clinic. We used to go to all these doctors. EB: Did you have to take care of your mother when she was sick? Yes, I did. It was different. I felt like I was getting used all the time and she was like sitting there helpless. It just didn’t seem right at all. There she was lying on the bed and I had to give her everything. I had to bath her, everything for her. It was just not nice at all. EB: How old were you when your mother started getting sick? Well, well, maybe I was about 11 or 12. Yeah.

Cassidy is not HIV positive. Her 6-year-old brother is. Thousands of babies have been born with the virus because the authorities were unwilling to provide drugs to stop mother-to-child transmission. In late April 2002, after years of dithering, President Thabo Mbeki and his government announced a U-turn in their policies: they pledged to provide strong leadership in combating the epidemic. Among other things, the authorities have presented plans to give all pregnant women drugs to prevent them from infecting their babies. The plan will be put in place in 2003, but already thousands of babies have been born with the HIV virus. Many of them have been abandoned by their parents or single mothers who are too poor or simply too overwhelmed by the disease to be able to care for them.  In Durban, the biggest city in KwaZulu Natal Province, Sean and Sharleen Baxendale are running a crisis centre to take in some of these babies. Their centre is called Tembaletu which in Zulu means “I have a destiny”.

Sean Baxendale and one of the Tembaletu babies
Sean Baxendale and one of the Tembaletu babies

OK, well what we’re doing is we’re taking in abandoned babies at the moment. Some of them may be HIV positive, some negative, and we just keep them in a place of safety until we can find homes for them or they can be adopted. During the time that they’re here, you’re simply taking care of them. We are. We’re treating them like family, kids, playing with them, stimulating them, feeding them, changing them, loving them, just general family life, yeah. EB: Have you had children who have already left? No, not from this crisis centre, no. We have had an HIV baby that’s died with us. When we found out that our little baby was HIV positive, I mean we were absolutely devastated. I thought no… because we had already lost a child of our own at first and we weren’t prepared for that. And we just decided that we’re not giving him back, that he could have any disease. It doesn’t have to be HIV. And I think over a process of time, we just said to ourselves, if he’s going to die, we just gonna love him now. We gonna love him as much as we can love him and we need ? and we’re going to deal with that death. And it took us…well, it took us his whole life span which was only 9 months with us, and we worked through… He was very ill. He was in hospital a lot and it was very emotional, and we were often just drained physically and mentally from dealing that. Like every night he’d be ill, that sort of thing. But in his good days, he was a beautiful, beautiful little boy that was just so bouncy and bubbly. And when he did die, it was really hard, but I think as Christians we had God on our side and we knew that he’s going to be in heaven. That was our… It was my Number One thing that he was going to a better place and he was going to be with God. And also we were in a community of friends in the church that were just with us. They were like shoulder to shoulder with us, lifting us up with whatever problems we faced. I think that’s just amazing that you can have friends that can help you through that. And even months afterwards when we would start crying about the same thing, they were just there to lift us up, and with time, I think you actually learn to release that pain, and you can see past it and do it again. It’s not the end of the world. EB: Do you feel like you are setting an example for other people by doing this? Yes, I think we are setting a precedent. I do think so. People will follow our lead. Those who are interested will ask questions and if we can deal with it in the right way, I mean we had people who come around and couples and…like a good example is we have on Tuesday nights a cell group here which is a group of people related to the church and they just come in and you just encourage them. That’s all we’re doing at the moment: encouraging them, just to hold the babies, play with them…to nurture them and I think it will spill over and they see them. And we’ve already heard…look after them for a period of time, and we just have to clear that up with the welfare and so forth, and then… We’d like for them to look after them on the weekends. That’s where it starts, I think. If they’re not prepared, their hearts, they’ll catch their heart and their conscience. It’s a strange thing. When it comes to children, people’s mind just changes. If you got a desire to look after children, it will happen, and you’ll see this happening all over.

Mrs. Mqadi of the Agape Child Care centre
Mrs. Mqadi

About 40 minutes away from the Tembaletu emergency shelter, in a residential neighbourhood of a Durban suburb, Mrs. Mqadi is running a home for nearly 50 children who’ve lost one or both parents to the epidemic. For nearly a decade, Mrs. Mqadi worked in a local aid organisation trying to raise awareness about AIDS. But as the number of infected people continued to rise, she realised that she had to take another approach: she decided to start breaking the taboo among Christians.

I didn’t decide to start this centre, Eric. It was a demand because wherever we went with the workshops, people said “I’m now coming forward. I’m disclosing my status. But I’m scared about my children. What will happen to my children when I am no more there because no one would like to keep them knowing that the parent died of AIDS.” So we were driven by the demand from the people that there should be such a centre. Before the centre started, I had three…three people went to the police station to sign that when they died, they should give their children. But where would they give their children? So I thought the children needed a place where they could be free and a place where they can own, and know that they are not trespassing, they’re not in somebody’s home. But it’s their home. So that’s how Agape Child Care started.

Agape means “God’s Love” in the Zulu language. The centre is actually nothing more than a five-bedroom home, surrounded by over 3 acres of land. One of Mrs. Mqadi’s assistants took me around to have a look.

This is our kitchen where we cook a meal for the children. As you see, the big pot. EB: How many children do you have here? We have 46, those that are sleeping in. And 29, those who are coming in daily. And we’ve got 109, those that get services from far away. … An abandoned baby. He’s got a twin sister. They were dumped somewhere and then one of the pastors find them and brought them here. As you can see, some of them are sleeping. They’ve got flu. Other ladies are sleeping here with them. And they just pull the mattresses from here up to where you came in. Some of the bigger boys are sleeping there. So at night every place becomes a bedroom here.

One of Mrs. Mqadi’s assistants
One of Mrs. Mqadi’s assistants

This is our toilet. We’ve been using it since last year. It’s the only bathroom we have. We’re supposed to wake up early, by 3 o’clock, to get everybody ready for school. And then by 7 o’clock, they need to be out to go to school. And then after that, we need to clean up the younger ones, those that are not schooling and also the adults. So we are sharing this bathroom. EB: One bathroom for how many? 46 sleeping in, including the elders. So it has been so difficult, yes. EB: Very, very difficult. This is one of the bedrooms where the big ones are sleeping in. EB: What’s the age range of the children? It’s from 0 up to 14. EB: What happens with the 14-year-olds? Where do they go afterwards? We’ve got a long-term goal where we are hoping we are going to build some cottages, and then we are going to take. Some of them have got siblings, so we are going to give them. And one mother in that cottage. And then when they are ready to support themselves, so they can go out to start their life. But at the moment, we keep them here.

The money, that was our greatest problem and still is our greatest problem. I remember when we were in this small office, when there was no food in the kitchen. We prayed because we said Lord, we’re here. You said, you promised us daily bread. So it’s time for you to provide the daily bread. But God is good because on top of the prayer, I found one shopkeeper and told him our situation and he said I must send somebody to come and he will see whatever he can come up with. And he came with a trolley full of food, and the children ate. We live on daily bread. EB: You live from day to day. We live from day to day.

Agape also runs a support group for HIV positive adults. The members sew clothes and blankets for the children and do work around the house. 23-year-old Rita joined the support group last year. She’s taking care of 10 children: 3 are her own. 4 belong to her sister who died of AIDS in 1995. The other 3 are her uncle’s. He died in 1993 allegedly of a stroke, she says. Rita depends on the group not only for emotional support but also to help pay for basic things for her children.

Rita
Rita

They’ve got a lot of support from the centre, especially for the schooling children. She said if there was no centre, they wouldn’t be at school. There was no money to get there. So they get the support from the centre, school fees, school uniforms, school books. And if there is anything that is needed from school, they get it here the centre, even her own children, they are getting support from the centre, getting some clothing, different things.

100 or so metres away from the support group, there’s a huge red shipping container. Over 40 children are packed into this big, windowless metal box. It’s cold inside, and it summer it must get very hot, but there’s nothing Mrs. Mqadi can do about it. Accommodation and buildings remain Agape’s biggest problem.

Children are increasing every day. Just this morning, a lady brought in two orphans. I turned those away because already we’ve got 47 children sleeping in this 5-room house. EB: They’re sleeping all over the floor. All over. You see, this is their bed here. We don’t even have a place to keep them during the day, so we pile them just here in the office because it doesn’t matter where, as long as the children are going to be warm. And then they are loved. They are happy. It’s all that cares to us. If they are clothed, they’ve got food in their stomachs, they are happy. We are all happy because they are innocent little things who didn’t ask to lose their parents. But they need a hand, just to hold them. I just hold my hand, hold them tight. I can feel she needs somebody to love.

Love is also something Cassidy’s younger brother needs.

His name is Busaki. He’s a very special boy, ja. He is. And I love him very much. EB: Why is he so special? Because he’s my brother, that’s why. That’s the first thing. He’s my brother and he understands. He’s not like stupid or anything and he tries his best, even if, you know. He’s still a child. He’s not growing as normal children but in…you can see that he is trying his best to be able to be a six-year-old instead of a four-year-old or three. Ja. EB: You were playing like a mother. Yeah, ja, tried. EB: It must have been difficult for a kid who was only 11 or 12. Yeah, it was, but I had to take a lot of love, though, because I had my brother too, and he needed care too. So yeah, it was pretty hard though. EB: Do you talk with him about the fact that he’s sick? Well, no, uh-uh. I never really speak to him, but the other children really feel inferior. I wouldn’t say inferior though. They’ve got this thing that he’s got germs or something like that. He sometimes does get a little, you know, what’s happening around you, but I never really speak to him, though. He’s still too little to understand. EB: Do other people reject him because he has HIV? Uh-uh, I don’t think so. No. EB: Is it because no one knows? You may say that. Only the family does know about this, but some of the members in the church, they do know, but you know they wouldn’t do that. EB: Is it difficult for you to talk about it? Would you talk to somebody about the fact that your brother has HIV? No. Uh-uh, no I wouldn’t. EB: Why not? Because I believe that he has a right to say whatever he wants to say, and I wouldn’t go out there and speak about his status, even if it can bother me now. It’s up to him whether he wants to talk about it or not, but if he doesn’t, he’s still too young, well, he’ll find his way, whether he wants to talk about it or not.

HIV and AIDS are still taboo among large numbers of South Africans, particularly among the poor who are being hardest hit by the epidemic. Adults and their children are avoided when possible. The problem, says says Dorothy Nielsen, the orphan programme co-ordinator of the Durban Children’s Society, is that the parents eventually die.

Dorothy Nielsen, torphan programme co-ordinator of the Durban Children’s Society
Dorothy Nielsen

Unfortunately there is perhaps a perception in some of the communities that all you need to do is put children in a children’s home. That is…two reasons why that won’t work. One, the main one, is that psychologically it’s not good for the children. All children need to be able to bond to a family. They need somewhere to belong to. I think belonging is the most important thing in a child’s life. If you don’t belong, then you’re looking for problems when the children become older. So I think world-wide there is a general acceptance that children’s home are not the best situation to bring children up in. The second problem is the sheer cost of it. Durban Children’s Society has two children’s homes. One of which has a special care unit for children infected by AIDS as well as the orphans, who many of them are not infected by AIDS and will grow up normally. But cost there averages out about 1500 Rand per child per month. EB: So that’s around $250 a month. Something like that. So it’s very expensive. If you look at the numbers, at the moment we are already supervising, assisting something 800-odd orphans in our area. There’s no way that anyone whether they be government or whether they be an NGO, non-governmental organisation, welfare organisations such as ourselves. It’s unaffordable to build children’s homes to deal with what maybe one in four children that are going to be orphaned, and that’s the type of figures that are being bandied around: 250,000 children in the Durban area by 2005.

To understand the scale of the epidemic, a simple statistic: nearly 1 in 2 pregnant women today in KwaZulu Natal province carries the HIV virus. As the number of orphans grows, more and more children will be left to fend on their own. The consequences for kids from poor families are obvious, says Sonya Nursoo of the Thandanani AIDS Orphans Community Programme.

More and more we’re finding young children leaving school to assist, to care for dying parents. And there’s going to be a point in time where we’re having children having to seek employment at a very young age because of the parents having died. Obviously what HIV/AIDS does is it robs children of a childhood and long before parents or the caregiver dies, we have a drop in the standard of living. Families who have already been poverty stricken are obviously being more heavily relied upon when the younger generation dies off, and we have grandparents who take care of up to 10, 12 grandchildren at time.

AIDS orphan
AIDS orphan

Happy is one of those grandmothers. She’s taking care of her granddaughter who was left behind by her daughter-in-law, but even that is a huge burden for this 58-year-old woman.

Now, I’m not working. I’m an old lady. I’m sick. Plus, there’s nobody to support. That’s why I came here because I need the help very, very much. EB: How did the mother die? She was going weak and weak. Every time. Most of the friends told that she had this disease. She didn’t told us anything but we discovered later that she had the disease. We think she committed suicide because she was well all of this day. Then she asked for the tablets. She took those tablets and after two hours, she died. EB: What about your son? Where is your son? My son is not working. He finished school long  time. He never even get a job. Till now, he’s not working. EB: So, you’re taking care of your son also. I’m taking care of my son plus my granddaughter. EB: Are you getting a pension from the government? No, not yet because I’m not 60 years. They said they can’t give me a pension. That’s why things are very hard for me because I’m supporting myself and my granddaughter. And I also have another granddaughter from my daughter. Now I’ve got two grandchildren plus my son to take care of. EB: But if you are not getting a pension, where are you getting the money to support them? I think maybe God help me because sometimes the work I’m doing with my hands, little bit of that I can get bread. Sometimes I got. Sometimes I don’t get. If I can get the help, I will be very pleased. Yes.

I did continue going to school because my granny used to be there at home. Ja. She was there, so I went to school, I come back, and I used to take care though. Yeah. EB: But it must have been difficult to concentrate on school if you had your mother who was sick at home, if you had your brother who was sick at home. Yeah, my brother wasn’t sick. He was quite a small child. He didn’t understand anything at that time. But it wasn’t very, very hard. Ja, and I did my schooling, and I passed that year. I was able to. EB: Are you still going to school now? Yeah, I am. Yes. EB: Are you a good student? I don’t know. That would be for my teachers to say, but I try and do my best whenever. EB: Do you get good grades? Yeah. I try but now it’s no more the same because I just do it to say well, I’m passing, not because I’m doing it for my mother or something like that. Nah… I just try, not like how I used to before. EB: In what way has it changed? What has happened? Is it because your mother and grandmother have died? Um…. I would say I was better when my mother was around because she used to give me that support and everything and encouragement and used to sit with me and work with me, but now, there’s nobody. It’s like, who cares? You know. I’m just doing it because I want to pass and I want to go through life. So I’ll do it. EB: Did your friends ask what was going on with your mother, why she was sick? I didn’t have friends, and I still don’t have friends, so, friends just never get to me at all. EB: Why is that? Is it simply because you’re too busy with other things? I guess so. I seem to think that family comes first in my life and friends. I will never get them at all. EB: But it must have been very difficult for you to bear all of this on your own? Yeah, it was, it was, but I try and I go on. EB: But there was absolutely no one you could talk to? Could you talk to your grandmother? My grandmother, she… we never ever spoke, I would say. Never used to be so together. We didn’t have the togetherness to talk about things, about my life or so. She just you know look after me as I wake up and say good morning, good morning and that was it. We never had that touch to say well, I didn’t have it. But it was quite hard when she died because I couldn’t deal with my mother dying and she died, it felt like another person that was dying too. EB: When did your grandmother die? She died in June ’99. EB: So a year after your mother? Right after my mother died. It felt like there was just something that’s calling them all together to die. It’s like every year, somebody is going to die in my family, ja. That’s how it is. EB: How does that make you feel? I don’t know. I don’t know. I don’t know. It’s OK. I get used to it though. EB: Is there anyone now that you can talk to? Now? I can phone the social worker and I’ve got my auntie who’s staying in Jo’burg now. She moved out. Ja, that’s only the person and then I’ve got my cousin Michele. So those are the only people I can count, and I can talk to.

The government, like much of the rest of South Africa, was in denial about AIDS for years. It was too big a catastrophe for anyone to fathom. Even those who have been directly affected by the epidemic, like 14-year-old Cassidy, are simply trying to get on with their lives as best as they can. Like others working in the field, Dorothy Nielson of the Durban Children’s Society is simply overwhelmed by the scale of the epidemic. South African society could continue to muddle on in dealing with the epidemic, but she believes that the country’s children deserve something better.

If everyone got together and co-ordinated what they are doing, we could try and make sure that the children are given a family to link to. If we don’t, you’re going to have more and more children on the streets. You’re going to have more and more child prostitutes because it’s the only way they can survive. So it’s a survival instinct. Somewhere we need to stop that because otherwise you’re going to have another lost generation. They talk about the lost generation during the apartheid struggle. And this will be another lost generation. Unless everybody does together and work together and offer something to help the children.

EB: When you finish school, what would you like to do? Oh God, I’ll probably go to journalism, become a journalist, ja. Just try and travel the world and if I don’t become that, then what will I do? I’ll open my own business. EB: What type of business? Umm…marketing or something like that, ja. EB: And why do you want to become a journalist? Why? Because I love writing, and I love the news, I guess. Just letting people know about the latest news and what’s happening around the world, and finding out the facts about life, letting people know, yeah, what’s happening around. EB: It’s a great deal of responsibility for a young girl, isn’t it? Ja. It is. But I cope with it. EB: How do you cope? I mean, I see you smiling, you look beautiful. How do you cope with it? I have to say, God has given me this…an abundant care for people and kindness, so, that gives me a lot of care and I wouldn’t think about things a lot. Ja. EB: Are there days that are difficult? Yeah, everybody gets those days. Yeah, I do get them too. EB: Where you just want to go and you want to cry and you want to just sleep and you don’t anything. Yeah, I get them. EB: And what do you do on those days? Do you actually go and cry and sleep? I don’t know. I just get angry. I just don’t have a sense of care, nothing. EB: When you say that you’re angry, who are you angry with? Is it with yourself or is it with somebody else or with the world? I just get angry at people. A person makes me angry. Because of something they do or say. They do or say, ja. That’s the only time. Ja. EB: Do you think that life has dealt you a bad hand? No. I don’t think so because I’ve got people that care and they are there for me. They are. So I wouldn’t say that or blame life, ja.

“Stories from the Front” was produced by Eric Beauchemin. This has been a Radio Netherlands presentation.