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Siyayinqoba Beat It! 2004 Ep. 10 – Caring for AIDS orphans

This tenth episode in the 2004 series of Siyayinqoba Beat It! focused on AIDS orphans; children who have lost their parents because of HIV/AIDS. We met little Andisiwe and her sister and heard about the hardships that they went through and how they are being taken care of. Cati Vawda from the Children’s Rights Centre furthered the discussion around these vulnerable children as the episode’s in house guest.

Jason Wessenaar: Kgotsong, reya le amohela ho Siyayinqoba Beat It! Support Group.Lebitso laka ke Jason. {Sesotho} Welcome to Siyayinqoba Beat It! Support Group. My name is Jason.] I’m living with HIV and so is everyone in the Siyayinqoba Beat It! Support Group. Each week we get together to talk about issues that affect our lives with HIV. Uma uphila negciwane le-HIV {IsiZulu} [If you are living with the virus] or have a partner, or a friend or a family member who is HIV positive, this programme is for you. We all know about the number of children orphaned by HIV and we all want to help but the real solution lies in HIV positive women, living longer and healthier lives. The Siyayinqoba Team went to Whittlesea in the Eastern Cape, let’s check it out.

Caring for AIDS orphans

Whittlesea, Eastern Cape

Andisiwe Nxanga (AIDS Orphan): My mother was sick with HIV/AIDS. When my mother was sick, we were very sad. Now we have no mother.

Evelyna Nqayi (Foster mother): Their mother passed away this year. She left four children so I took two from her children. The other two children are in George. I’ve got seven children in this house, two of them are orphans from HIV.

Rev. Fikile Mgcoyi (Moravian Church): The Moravian Church started the project which it called Masangane. Masangane means ‘Embracing’. When it was started it was only there to help those children left by their parents who died of AIDS. These are the two kids. We have just admitted them for a while to support them especially in education. With the help of the Evangelical Movement in Germany, Masangane started giving contributions to help those children who were left by HIV/AIDS people. We only help them with their education.

Andisiwe Nqayi: I’m learning well at school. This is my report.

Evelyna Nqayi: Did you pass?

Andisiwe Nxanga: I passed.

Evelyna Nqayi: Which grade are you going to now?

Andisiwe Nxanga: I’m going to Standard six which is Grade 8.

Rev. Fikile Mgcoyi (Moravian Church): We felt helping the children is not enough and watching the mother die, you know? Here the husband and the wife are affected, having many kids in that case, it’s touching.

Support Group

Jason Wessenaar: It’s very painful for me, having watched that, just to see what HIV/AIDS has done to a lot of children. I have just lost a child who I was fostering, who was an orphan. He was the eleventh child, the mother died a few years ago. This is very, very painful.

Busisiwe Maqungo: From watching these children, the worst part of it is they have been separated from their siblings. They watched their mothers being ill and dying, that was already too much. Now they are staying in this place, separated from their siblings. It didn’t have to be like that. If their mother or father were on ARVs perhaps things would have been different.

Jason Wessenaar: That is very, very difficult. I don’t know Prudence what your experiences are with orphans.

Prudence Mabele: Women that were working with that positive woman and her and her husband died a month after one another and then they left twins, Phindi and Sindi. Before they died they left something that says I should look after their children. It was so difficult because I didn’t qualify according to what South Africa calls in their policy: I’m not married and all those things. So I was just fostering the children while they were staying in one of the homes like Ethembeni Home. So I would go visit and help there until one day while we were still trying to work out what is the best way to adopt the children, another couple came and took them.

Jason Wessenaar: And all these kids love, really. They need care, I mean can staying in an institution provide certain support? Yes, they get food, they get clothed, they get to go to school but there is no personal interaction where they can talk to somebody or be given that kind of love that they need and the space to be who they want to be. And I know of a woman who’s positive and she said she was refused adopting a child on the basis of her HIV status. That is upsetting because if you are working and you are capable of caring for kids, capable of looking after a child, I don’t see any reason why you shouldn’t be allowed to foster a child or even adopt for that matter. The only thing I don’t like is people being discriminated because of their HIV status.

Lihle Dlamini: And what happens in other cases where … uthol’ukuthi there is u-aunty or umalume … angabathathi ngothando. Abathathe… uzothola leya mali … angabathandi labantwana, uthol’ukuthi manje seyehlala nabo kodwa manje uyabahlukumeza. Uthol’ukuthi abanye uyabahlukumeza ngokocantsi futhi, uthol’ukuthi umntwana usebalekile manje kwamalume akasazi nokuthi uzoya phi. Uthole omunye seyohlala emgaqweni, useyi-street kid... {isiZulu} [you find that there is an aunt or an uncle who takes those children in, but with no love. Just to get the money from the Child Support Grant or the Foster Care Grant; without loving these kids. You find that they are being abused. Some are sexually abused. So they run away from the uncle’s house. They end up in the street and become street kids as a result of the abuse]

Busisiwe Maqungo: I always pray to God uba ndiysweleka yi-HIV, at least makandilinde okoba lo umdala umntwana ade abemdala. Abemdala enough azokwazi unakekela lo umncinci. {IsXhosa} [that if I die as a result of HIV, let it be that the elder son is old enough to look after the younger one] I would die a very happy woman.]

Prudence Mabele: So in the meantime, keep on saving even if it’s R120 a month. Put money in every month, and that will be his savings. When you die, the savings will be accumulated.

Busisiwe Maqungo: I always thought that I would like my children to be adopted by a gay person. Why? Because this person is gay and there is no way that this person can have their own children. So if they have my children they are going to give the love they were going to give to their own children.

Anthony Fernandes: I’m gay. This is the thing I don’t get and it confuses me. I know there’s a lot of scared and kind of panic about what gay people have to offer but seriously there’s two people in a relationship like myself, I might be positive, I’m well educated, I know about ARVs, my partner is negative and we’ve been in a steady relationship for many years, what is this hassle? I can’t think of a better home where I can let somebody in and be taken care of and give them a good healthy future where they would be well educated, well looked after, well nourished and with lots of information and a good education; and not just gay, lesbian as well. I mean I know there’s small moves happening here and there but open the doors for us so that we can get in there. If there’s hassles and fears, come and talk to us. Get our past, get our history and see where people are.

Prudence Mabele: Let us not be afraid of writing living wills. For example, I could leave here now and maybe be hit by a bus. So death is something one cannot run away from. You have to face it. My problem is, in my living will I change names all the time. When someone upsets me I scratch their name off.

Vuyani Jacobs: You must not make her angry at all.

Busisiwe Maqungo: If you know you are in her will.

John Vollenhoven: Ek het twee vrouens gehad wat saam met my versterking groep gehad het. Julle kan onthou, ek het nou die dag vertel van die een wat 11 CD wit bloedselle in haar gehad het. En die vroutjie het drie kinders gehad. Een was twee, een was vyf, en die een was elf jaar oud. In ’n week se tyd het sy gesterwe.En wat vir my die tragiese was van als in hierdie situasie was gewees is: dat haar ouers was oor sestig en hulle al twee is ‘pensioners’.En hulle kan dit nie vat dat hulle kinders in n weeshuis moet gaan sit nie. Daar is nie speel plek vir die kinders nie, want hulle het nog reg bo gebly wat nog baie gevaarlik is vir die kinders. Maar toe sê hulle vir my dis hulle dogter se kinders, hulle kan nie sien laat hulle kinders in ’n weeshuis moet wees nie. Die kinders het toe maar by hulle gebly. En vir my is dit baie tragies laat hierdie groot mense wat al reeds hulle kinders groot gemaak het, nou moet hulle weer met hulle kleinkinders ook sukkel. {Afrikaans} [I had two women in my support group. One of them had a CD4 count of 11. This lady had three children. One was two years, the other five, and the last eleven years old. What was so tragic about their situation was that both her parents were pensioners over sixty years old. They couldn’t accept their grand children staying in an orphanage. They lived upstairs where there’s no playground for the children, which is very dangerous for the children. But they felt it’s their daughter’s children and they couldn’t allow that they go to an orphanage. The children are living with them. For me it’s tragic to see elderly people who have already raised their kids, now having to raise their grandchildren.]

Lihle Dlamini: I don’t have a child and I don’t see myself getting married but I would love to have a child and if I can be given a chance to take care of another person’s child, I know that I will love that child unconditionally. And everything that I have, I could leave to the child. It doesn’t matter if I gave birth to that child or not. I took the child and agreed to take care of it. People shouldn’t think that just because we’re HIV positive maybe in two years we’ll be dead. We are on ARVs, it doesn’t go like that.

Jason Wessenaar: Re saya papatsong. {Sesotho} [We are going to a break] We’ll be right back.

Jason Wessenaar: Siyani amukela kuSiyayinqoba Support Group. {IsiZulu} [Welcome to Siyayinqoba Support Group,] the programme for everyone infected and affected by AIDS. We are talking about children orphaned by AIDS and what we can do about it. In Whittlesea, the Reverend Mgcoyi of the Moravian Church realised that they could not cope with the number of children orphaned by AIDS. They came up with a creative response. Let’s check it out.

Preventing children from being orphaned

Whittlesea, Eastern Cape

Rev. Fikile Mgcoyi: We started an example of one person. We have a lady here called Pumeza, she’s amongst us. She was close to me, I visited her in the hospital, she was very sick. She couldn’t walk, she couldn’t do anything.

Pumeza Siza: Ndithi xa ndisuk’eBloemfontein, kusithiwa ndishiyekelwe zii-hours ezimbalwa ndisweleke. Wathi umama wam xa endijonga, asuke akhale angakwazi undijonga. So umakazi wam wathi mandiye pha kuye, ndiyogulela pha kuye, ndise ndiswelekele pha kuye bhetele kunoba mandibhubhele apha, wandithatha. {IsiZulu} [When I left Bloemfontein, they told me I had a few hours to live. When my mother looked at me, she would cry. She couldn’t look at me. So, my aunt said I must come with her so that when I die, I’m with her. So she took me in to look after me while I was sick.]

Dr Martin Richardson: Her church minister, Rev Mgcoyi, contacted me and asked me if I was prepared to supply the medication to the church or to her and that would then be paid for by the church.

Pumeza Siza: Ndadibana ke nalogqirha ungu-Richardson, wandinika le-treatment ndiyityayo i-Videx ne-Zerit. So zindiphethe kakuhle kakhulu. Ukusukela ngoko zange ndiphinde ndigule. {IsiXhosa} [When I met Dr Richardson, he gave me my treatment, the Videx and Zerit. So, I’m coping well. Since then I haven’t fallen ill.]

Rev Fikile Mgcoyi: People who are taking treatment here, under Masangane, have a hope of living a longer life. See, that fear of death, that denial is no more there.

Pumeza Siza: Siyayilwa le-HIV nomntwana wam. Asifuni ukuyinika chance. Soze isibulale futhi. {IsiXhosa} [We are fighting this HIV, my child and I. We won’t give it a chance. It’s not going to kill us.]

Rev Fikile Mgcoyi: Most of our people now know that their lives can be prolonged by taking their treatment.

Pumeza Siza: Oko ndaqalisa utya le-treatment yam, zange ndivomithe, ndatyeba. Oko ndaba-right ke, ndifana nangokuya ndandisaphilile. {IsiXhosa} [Ever since I started taking my treatment, I never vomited, I gained weight. I came right. Now I’m just like I was before.]

Dr Martin Richardson: She’s showing remarkable improvement physically. She looks well and she’s obviously doing extremely well on the treatment so far. Originally we have the blood result of her CD4 count of 42, she now has a CD4 count of 242.

Rev Fikile Mgcoyi: From 42 when she started in July last year and now it’s December with 242.

Pumeza Siza: Yi-Videx le, ndisela two [This is Videx. I take two] before breakfast, ndiphinde two [then two again] before supper. Yi-Zerit le, ndisela [This is Zerit, I take] one before breakfast and one before supper. {IsiXhosa}

Dr Martin Richardson: The vast majority are on double treatment or double therapy with the Zerit and the Videx. Triple therapy is definitely the best but double therapy is better than nothing.

Dr Martin Richardson: Pumeza, how heavy were you at the start?

Pumeza Siza: I think 30 or 38.

Dr Martin Richardson: 38 kilograms?

Pumeza Siza: Yes.

Dr Martin Richardson: Come and stand on that scale and see what we’re doing now. Seventy-five kilograms, just about double. Seventy-five kilograms from thirty-eight. Ja I mean I can see it, I don’t have to be a doctor to see that she has done well.

Pumeza Siza: Ngenxa yezipilisi ndizityayo, ndingumama ophilileyo, nomntwana wam uphilile. Ndingumzali ophilileyo, ndiyafana nabanye abazali abaphilileyo abengenayo lentsholongwane kagawulayo. {IsiXhosa} [Because of the treatment, I’m a healthy mother and my child is healthy too. I’m a healthy parent. I’m like other parents who aren’t sick and who don’t have HIV.]

Support Group

Jason Wessenaar: This is probably a model other NGOs can take on from say, “Let’s not just focus on taking in kids, let’s focus on the mothers and helping”, because I can imagine not helping. The doctor did say that the lady on double therapy, preferably she should be on triple therapy but that’s the little they could do.

Lihle Dlamini: Another thing that makes me angry guys, and this really pisses me off, are the NGOs who take orphans and look at them as a source of getting funds from funders. They go to schools and ask the principals how many HIV orphans they have and NGOs get a lot of money and the money doesn’t even go to the children. And I mean, children are being used as guinea pigs by many NGOs out there and they really should stop doing it.

Busisiwe Maqungo: To avoid this whole thing let us put parents on ARVs so that they live longer.

Prudence Mabele: [There is hope because things are not like they were before. With the prevention-of-mother-to-child-transmission programme has helped the mothers give birth to children who are HIV negative. There is also ARV treatment for the mothers. It will help them, together with the fathers so that they are able to look after their children.]

Lihle Dlamini: There’s this child whose mother died and the children had to stay with her grandmother and their uncle. The grandmother was getting a grant for looking after this child but the child was being sexually abused by her uncle and the child did go to the principal and told the principal that: “At night my uncle touches me here”. And when the principal tried to interfere, the whole family was against the principal because he is involving himself in family matters. The grandmother was protective of her son because she was getting the Child Grant.

Jason Wessenaar: Cati Vawda of the Children’s Rights Centre joins us after the break. Stay with us.

Jason Wessenaar: We welcome you back to Siyayinqoba Support Group, we also welcome Cati Vawda from the Children’s Rights Centre who has worked extensively on the rights of children infected and affected by HIV/AIDS.

Cati Vawda (Children’s Rights Centre): There’s a lovely story, it’s called Life Times. Birth and death are life times in between and it’s a picture storybook for young children to help them understand that every life has a beginning and every life, for a bird, for a person, has an end. It is scary, it is a big step, it is something that is not comfortable but it is reality for all of us. What’s different perhaps about having something like HIV is you think about it more, it’s more present in your daily reality because of the awareness that its there. But it could be like that if you had cancer with perhaps less chances of having a longer lifetime. It could be that you’ve got diabetes, there are many other things.

Busisiwe Maqungo: What is going to happen to my child when I die because with my present family, I’m not quite happy to leave my child with them. So I know what I went through with this family and I wouldn’t like that. And automatically if I die tomorrow, they would have to go to the same family.

Cati Vawda (Children’s Rights Centre): If you have expressly set it out that you want your children to stay with a friend, as opposed to a biological family or a marital customary or otherwise relationship and you’ve expressed that and the person has accepted to undertake those responsibilities. If a family member comes in and says that we want the child then it will have to go to Family Court. Which is different than when you have a situation to say I want my children to stay with my friend and everybody in the family says that’s fine, the children are there and nobody’s raised an issue. Children’s realities are so harsh and so cruel and happen for so long so that for any adult who has responsibility, whether they are your biological children or whether you are socially parenting those children through fostering or adoption or whatever the mechanism has been. Looking at the kind of planning and thinking about this child’s best interest. What am I doing that’s going to help this child’s best interest to be realised? It brings you to all the points you need to consider. So one of the things you can do for every child is to make sure they get a birth certificate. And make sure you get a certified copy of the birth certificate and start to keep those documents in different places and safe for somebody who knows what you want to have done. So writing a will almost at the birth of your child, and thinking if I were to stop now, if I were to get hit by a car, what would I want for my child? Is it my friend? And actually not a family member because I know there’s alcoholism or gangsterism or some other problem that may not be in my child’s best interest. But I know my friend Prudence, I could give my children to her, she would look after them and I know she would do what’s in their best interest. Or I could give my child to somebody who is gay or lesbian as a couple and they might be able to provide the best. And if you start to think about that, you’re actually being a responsible parent. And you’re going to be able to make sure that for children who do become orphaned, that you’ve prevented potential violations, potential abuses and minimised those and kept them safest. So I think that’s part of it, the kind of discussions you were having about talking to children and asking them what they think, that’s also part of their rights. It’s part of their right to participate and a piece of that is having information about themselves, about having their questions answered and going and learning how to hear what your child is saying and getting strength from others. Because in order to be there to give those answers, any caregiver, any parent will need others. No adult ever raises a child all alone, ever.

Jason Wessenaar: Siyabulela Cati Vawda, ne Support Group, nani babukeli ekhaya {isiZulu} [Thank you Cati Vawda and the Siyayinqoba Support Group and the viewrs at home] Things we should remember:

1. Children orphaned due to AIDS should be looked after in their communities.
2. Antiretrovirals can keep parents alive and families together.
3. Children should be protected from physical, emotional and financial abuse.

We hope that you have enjoyed the show and are feeling the Siyayinqoba spirit that together we can Beat It! If you have any questions or comments for any member of the support group or for Dr Nombulelo, our resident doctor, please contact us on the numbers on your screen now. Thank you for joining us and join us again next week in the Siyayinqoba Beat It! Support Group. Stay healthy and stay positive.

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