Grandmothers’ Testimonies

Zodwa Hilda Ndlovu

Durban, South Africa

I’m the founder of a group named Siyaphambili, which means “going forward.” It’s a group that provides support for people living with HIV. Working with my community on HIV and AIDS became so important to me because of what happened with my own children, because of the very sad deaths they endured because of this disease.

When my daughter became sick, in 1999, there was so much fear and silence about HIV. In those days I was a nurse, working in the hospital’s infection control ward, and the culture was not just about keeping things confidential, it was complete secrecy. Young people when they found out they were positive would plead with us, saying “Don’t tell my mother, don’t tell my father, it will kill them to know that I am dying”. We would keep this information inside ourselves, although it was very painful to do. Mothers would beg me to tell them what was wrong with their children, and I could not tell them anything. Then that same thing happened to me. When my daughter was sick in the hospital the other nurses knew she was positive, but they felt they could not tell me, and they kept me in darkness. I was staying with a friend, another nurse, who was also caring for my daughter, and she finally told me. She said “Zodwa, I am telling you this because I know you for long, but you know that I must not tell you. Because if you can go to the hospital and say that I told you your daughter is HIV-positive, I am going to be expelled at work and lose my nursing certificate.” So I knew then, but my daughter kept the HIV a secret from me until the day she died.

So soon after, my son killed himself. Like my daughter, he never told me he was infected with the virus. One evening I came back from my volunteer work and I saw that the house was burning. My son was inside the car port and he had taken a can of petrol, threw it over himself, and burned himself to death. At first I did not understand, and it was only a month later, when I was cleaning the house and taking all the mattresses out, that I found a letter from him.

He wrote, “Mama, I could not stand that I am HIV-positive, and we have buried my sister in 2000, and now I thought you were going to bury me.” That is when I cried. I did not cry on the day he died, but that is when I finally cried. I said, “Why should this child do this?” Because now I have got the knowledge. Though I know there is no cure, no treatment, I have got the knowhow of how to live with HIV, I could have helped him. Here I was helping other people cope with the reality that their children were HIV positive, but I could not help my own son. He thought he was saving me from the pain of a killer disease, but this was much worse.

Now I was left with no children. That day I realized, well, in life you don’t have anything.

And it did become worse before I could turn myself around. I was diagnosed positive, and my husband passed away. Finally, after everything that had happened, after all of this, I pulled myself together and said, “No, I don’t want other people’s children to die like my own children.” This is what I told myself. I am going to work with this animal of HIV, I want to fight it. And I also want to help people. I want everybody to know what HIV really is. I will work until I reach my goal. I want to be happy. I am 62 years old now, and have so many years living with the virus. And I am not shy to say it. But I have had to fight to help others.

Sometimes HIV-positive people do have to fight not to be second-class citizens. Earlier, people could be expelled from work if they were openly HIV-positive. In 2005, I was working in a nurses unit funded by the Canadian Nurses Association. I went for a new post, and the manager of the Union said “Zodwa, we are not going to give you a job here because you are HIV-positive and the nurses are going to get infected by you.” I told him that I was going to get that job whether he liked it or not. I was not going to be discriminated against. Two weeks later, I was in front of the board to introduce myself, and one of the managers lowered his voice and said, “But Zodwa, I heard you are HIV-positive.” I said “Say it out loud, don’t soften your voice. Yes, I am HIV-positive since 2000. This is my HIV. I love it. It’s in me and there is no way I can pass it to you.” They were shocked, and I got that job. I worked for the one year contract and then I left them.

I was pushing very hard to work on organizing in my community, holding workshops for the whole of Malazi, all the people living with HIV. People got to know me—the Department of Health, the social workers. They would say “This is the Mama who is HIV-positive wanting to do workshops”. At that time I was angry, maybe more than I realized, but it kept me pushing. One thing that helped me to clear my mind was joining other organizations, like the Treatment Action Campaign and the Gender AIDS Forum, where I could talk. I did not keep all of this struggle to myself and in my heart. When I finally made these workshops a reality, I started with me. I started with myself. I think that helped me, because I did not hide my status.

When we started this organization, Siyaphambili, we were just five women living with HIV. One of the first things I did was to set up a soup kitchen for the children of the four women I was working with. I ended up feeding about 40 children in my neighbourhood. I was using my own pension money. The numbers kept going up, and finally I was able to feed them out of the local councillor’s office, instead of my home. But the local council still isn’t giving me any money to pay for the food, and we’re now feeding about 68 orphans every day. I have applied to the Department of Social Development, and they’ve promised they will do something, but there is nothing yet. I ran out of my pension money, all of the money I had from being a nurse, so now I go out and ask anyone I can for money for the food.

I’m also trying hard to get some money to help pay the volunteers who have been doing this work for so long. Everyone in my organization, including me, does the work for free, from our hearts. But how do they keep themselves going? I’ve been trying to get money from the donors, but so far (outside of the SLF) they haven’t been willing to give us anything so that the volunteers can have an income for themselves.

For the soup kitchen I now have 17 volunteers. There are volunteers in my organization who also go out to the community to talk to people who are sick, and also we help the grannies who are staying alone. Because it is dangerous for them to stay alone, we visit them. Grandmothers in my community are severely under pressure. Most of these women—if not all of them— find themselves raising as many as three, six or even eight grandchildren. They have no support financially or emotionally.

They are expected to feed, clothe, and school these children with the small government grant given to senior citizens in South Africa. To help them, we hold a support group for grandmothers on Tuesdays for skills development, mainly sewing. But the real benefit of the group is the sharing between grandmothers. We talk about our challenges and help each other grow, all the while enjoying a cup of tea. We also provide cooked meals to grandmother-headed households and struggling families—giving orphaned children food before and after school.

We are also doing counselling and education in our community about HIV and AIDS. Even though it is easier for some people to get treatment for HIV these days, many are afraid of taking the drugs. Now the problem is people say “We are going to take this treatment for life!?” They think it’s a life sentence. But I convince them to take the tablets. Some people just want to stay in denial, and they don’t understand that with the treatment they really will get a lot better. To them, taking the tablets means admitting they are sick. And many of them still don’t want to disclose their status, and don’t want to take the treatment because it will mean others will know they are positive. So the clinics have started sending people to my organization to get ongoing counselling while they are in treatment.

People need to understand that we are having difficulty in Africa because HIV is continuing. Even the children that are born today, we are giving them lessons about teenage pregnancy and such, but there are new infections. It’s not going away. It is still a serious problem.

We really need to be doing a lot more of the door-to-door and giving people information. That’s what my centre does, we go out to the community. If everyone could talk about HIV, there would be no fear. People would understand it. So it’s important to recognize that this outreach has to continue. More people have to be helped, encouraged and supported if there is to be further progress fighting HIV.