In case I forget – coping with AIDS in Uganda

Boy with his memory book
Boy with his memory book

When the HIV/AIDS epidemic began in the early 1980s, one of the hardest hit countries was Uganda. By the early 1990s, over 18% of the population was infected with HIV, and in some areas, the figure was over 30%. But by the turn of the century, Uganda had become one of the few countries in Africa that had managed to turn the tide, thanks to the government’s openness about the disease and the work being done by local groups across the country. Infection rates have dropped from 18% to just over 6%. But people were still coming to terms with the enormous toll of the epidemic.

Original broadcast: May 26, 2004

Photos: Eric Beauchemin

Transcript

Radio Netherlands, the Dutch International Service, presents “In case I Forget: Coping with AIDS in Uganda”. The programme is produced and presented by Eric Beauchemin.

It was difficult to tell people you are HIV positive because there wasn’t much support.

Mom told us, ‘ah, you cool down. You see I’m not going to die tomorrow. Haven’t you ever heard of people who are dying in accidents, motor accidents?

When the AIDS epidemic began in the early 1980s, one of the hardest hit countries was Uganda in Central Africa. By the early 1990s, over 18% of the population was infected with HIV, and in some areas, the figure was over 30%. The epidemic has taken an enormous toll on Ugandan society: over 1 million people out of population of 25 million have died of the disease…nearly a million more are infected. The epidemic has also profoundly affected Uganda’s young: nearly one million children have lost their parents as a result of AIDS. But Uganda is one of the few countries in Africa that has managed to turn the tide, thanks to the government’s openness about the disease and the work being done by local groups across the country. Infection rates have dropped from 18% to just over 6%. But even two and a half decades after the disease emerged, people with HIV or AIDS are still often feared and rejected. Gladys, a cheerful, healthy-looking teacher in her 40s, was diagnosed as being sero-positive in 1993.

Gladys
Gladys

It wasn’t really something easy to go through. I didn’t get scared by then because my husband was still living. But in 1994, when he died, I really got scared. I was so depressed. It was difficult to tell people that you are HIV positive because there wasn’t much support. So what I did was just to leave working because I was even scared to go in public. I decided to stay in my home, going to the garden, getting food from there. I had no other any source of income other than the food I had in the garden. I had electricity in the house but electricity was cut off because I had no money to pay for the bills. The children, by then, it was difficult to take them to school because I had no money. Not until a friend of mine came to me because she was a neighbour of mine in the place where I live. She told me, ‘ah Gladys, you don’t get scared. Let’s go and join the other group in Katikam.’

The other group was a post-test club or PTC. It’s made up of people who’ve been tested for HIV. Regardless of whether the results, people are encouraged to join a post-test club. The clubs conduct AIDS awareness campaigns in communities. They also offer emotional support and practical assistance, says Mackay Masareka, the director of Integrated Community Efforts against AIDS, or ICEA.

ICEA
ICEA

Once you have become a member of a post-test club, you will access free medicine, free medical treatment. You will also access timely counselling whenever you need it. There are projects that we have introduced, income-generating projects for people who are registered as PTC members. So when the people look at such advantages, they actually come and join PTCs and start participating in the activities of a PTC to preach the gospel of HIV/AIDS, that my people who have not yet got into this trouble don’t get there also.

When Gladys discovered her status, there were no post-test clubs. People with HIV were on their own. Gladys still remembers how lonely she felt.

Gladys with her children
Gladys with her children

As you know with the AIDS, I knew within a very short period of time, I was going to die because my husband had died. So I had no hope of living. I knew that there was nothing else that I could do to stop the virus from killing me. So I just sat, waiting for it, waiting for death. And you know, with people around here, there were no people by then who could come to your rescue. People couldn’t even really know what you are going through except the church leaders. They could support you by praying with you, by preaching the word of God, and you could pick up from there. But it wasn’t really an easy time. And there was nothing I could do because by then, there were no such organisations to support us, as there are now. I spent six years without working. Not until I got used to the club. Then I started sharing experiences with members. Then I picked up and I went back to work. Currently I’m working as a teacher in primary. And I’m being paid some little money at least that can enable me to buy something in the home to pay school fees for the children.

Mackay Masareka, ICEA director
Mackay Masareka, ICEA director

Post-test clubs have been created throughout Uganda as well as in many other countries in Africa. They don’t only support people who’ve been diagnosed HIV positive, says Mackay Masareka, they’re also raising awareness about the disease.

The post-test clubs perform their activities ranging from drama shows in the communities, film shows, dance and drama and songs, all these packed with a message about prevention, care, counselling services, and then also instilling hope in people who maybe will have got frustrated. So, when these drama groups go in communities, there are some of them who are HIV positive. They come out and talk about their sero-status. Now when someone was about to lose hope sees someone in the same situation, but he’s passing out a message actively to the rest of the people. He’s becoming useful to the rest of the community and is living a better life than this one here. The other one also picks up hope that no, I think, let me also join such a PTC that maybe I can also live a better life than I’m living. I’m not in it alone. We are many people in this situation.

Post-Test Club T-shirt
Post-Test Club T-shirt

Two and a half decades into the epidemic, many people are still reluctant to join a post-test club because of the stigma attached to the disease. In one clinic I visited, for instance, 1100 people have been tested, but only 350 people have actually joined the local post-test club. Even though PTCs encourage both those who are positive and negative to become members, many people are still wary…particularly men.

Men rarely come… They don’t want to be known. You find that about 20 percent of the men are the ones who actually come up to be tested and even come out to talk openly about their sero-status just because of sometimes selfish behaviours like wanting to take on more women, multiple marriage. And I think that some men want to go outside this district, test from there, know their sero-status alone and keep to it, so that they can take on more women. Their status is not actually known by these people whom he’s living with. And I think because they have money, they are able to do it. So the 80% which is basically of women, these are actually people who don’t have the money to go to other places to test.

Gladys regularly attends a health centre in Kasana, about an hour’s drive north of the Ugandan capital, Kampala. It’s located behind the city hospital, and every Monday and Wednesday, people come here to be tested. Today, there are about 30 people waiting inside.

Before they even come to this health centre, we’ve got home-based carers. We call them counselling aids who actually move from home to home to encourage people to come for testing and know their sero-status. So when they reach here in the health centre, they go one by one for voluntary counselling. EB: And that counselling is done by members of ICEA? Yeah, the counsellors who do that counselling are actually members of ICEA.

James is one of the ICEA counsellors. He’s meeting with a teenage girl.

OK, I’ve been telling her that we’re doing this voluntary testing and counselling here. It is free. You have to come when you have already decided on your own. We’re not forcing people. So I’ve been telling her how the system is going. So, she agrees to have a test. She’s quite young. EB: How old is she? She’s still a student. She’s 16 years old. But the mother died of AIDS. I don’t know. Maybe she’s thinking that she has the same problem. EB: How do you prepare people for the results of the test? We talk to the people until the stage where the client reaches the stage where they are ready to receive the results. It’s challenging work because we get a lot of people with different problems. We get discordant couples, one who is positive and the other one who is negative. So, really, to make her be ready for the results when the one is already positive, it’s a problem. But we do counselling until the stage where she’s OK.

The results are available within an hour, but the whole process takes up to five hours because so many people go to be tested. In fact, clinics often have to turn people away because they run out of testing supplies. Most people arrive at the health centre on an empty stomach. So with funding from Plan International, ICEA provides a meal to both those who are getting tested as well as the counsellors and other volunteers. For people with HIV or AIDS, feeding themselves and their children is a constant problem, says Mackay Masareka.

We’ve also got clients who are bed-ridden in their homes there. And there’s a mobile clinic. We call it a mobile clinic but it’s actually home-based care, where we send a counselor and a nurse. But the challenge that we are finding is that the person who is taking those drugs doesn’t have a well built-up body to receive the drugs. You look around and you don’t actually see any food security at all. Children get out of school to plant crops so that they can get enough food for the family. But it’s actually not enough. And you know Luwero is one of the districts in this country which has food insecurity. So we are saying how shall we combat HIV/AIDS if we don’t also look at other social issues?

ICEA wants to set up a programme to provide food not only to people who are bed-ridden. Proper nourishment is essential for anyone with HIV or AIDS because the virus weakens people’s immune systems. The disease also makes it more difficult for infected people to work and make a living. Single women in the community who are HIV positive, for example, are often forced to sell their bodies to be able to get food their families. The Integrated Community Efforts against AIDS believe everyone who has the virus should be included in the food programme.

We shall implement this programme concurrently, supply food to the clients, but also bring their families together, find out which crops are viable in the areas of residence, and then start training them, see how we build their capacity in planting the food crops that will be able to yield enough food for the entire family. We believe that if we build for a period of three years, there’ll be enough food in these families that when the other part of giving food phases out, the families are able to move on. This basically means that you have to train the children because the children will be the ones who survive. Yeah, in fact we are focusing on the entire family, but specifically the children because the parents if they are going away any time, the plight will remain with the children. So we are focussing on the children.

Even though children don’t belong to post-test clubs, the members realise that their children need to be prepared for life after they are gone. They also want to make sure that they’re not forgotten by their offspring. In the past, aunts, uncles, grandparents and members of the extended family would have ensured that those memories were passed on to the children. But so many people are sick or dying of AIDS these days that there may be no one left to tell the stories. So in Uganda and elsewhere in Africa, infected parents are preparing memory books for their children.

NACWOLA
NACWOLA

Yudaya Nazziwa is a member of NACWOLA, the National Community of Women Living with HIV/AIDS in Uganda. She has four children, including 17-year-old Dennis.

This is here my memory book as you see it. Here are stories about my family, as it’s written here. EB: Can you read just this first page? What does it say about the story of your family? The story of my family. My birth: I was born in October 1987, 30th. EB: And what did your mom write here? I first see your face and to see my baby. It was a very happy day in the family. As a baby: you used to cry and you were brown. And you…you were brown. But now you are black. I don’t know what’s happening with me. EB: And there’s a picture of you here when you were 6½ months old. Yeah, I used to be happy. I don’t know what happened. Maybe they were breast-feeding me before taking the picture. …. Ah, the first time you began to walk. You were very happy. Even your daddy was very happy. I remember your daddy looked at your legs and said you are going to be a good what? A good footballer. Ah, I like that game! EB: Are you a good football player? Yeah, I’m a good footballer and even I like boxing. EB: These are pictures of you as you were getting older. Yeah. Growing up: as you see me, I’m a big boy now. I can decide for a wrong and what.

Dennis and his mother
Dennis and his mother

EB: When your mother was making this memory book, were you here with her? Yeah. Some. Some of the time. Yeah, yeah. EB: And what did your mother tell you as she was writing this, as she was making it? Ah, like here. Your first time. She told me, but what I remember your first time to walk. Ah, your daddy used to be happy. Even me, the same to me, I was happy there. I came from the Katimba. She was working at the open market. She told me she came back, and then he told me ‘ah, your baby, he made a first step!’ Then Mom, what did you buy for me for walking? I bought you many things. By then daddy was around. But they told me that you gave me like a sweet. Then I was very, very happy, huh! EB: When did your mother start writing this book? Do you remember? It was 19… 2000? We started in 2000 to write his book. Before I had not get the advice. I was not trained. You know, it’s not easy. It needs time. You have to think first what you are going to write. EB: How long have you worked on Dennis’s book? Since 2000, and it is continuous. It doesn’t end. Whenever we see something, if my memory works hard and I remember something, we first talk, then we come to write.

Here, the day your father died in December 25th, 1990. It was a Christmas Day. We started the new life. Life completely changed. That day I left you with your grandmother. And you didn’t cry. But God is the one who gives and the one who takes out. The day when I was sick, you wake up at night and asked me how I was feeling.

EB: What was it like for you writing these books? That one, huh, there are some things I like, but sometimes it made me to remember bitter memories. It is good because I make my children to know each and everything I know, like the death of their father. You can see them. But again, I know how to overcome it because it have to be there. EB: But you said yesterday that this was also a way for you to tell your children that you had HIV. Yeah, I had to write it. It is the most important thing. I had to tell them and to write because at first I used to tell them, but it was very rough, the way I was telling them. It was very rough. Before training, I was shouting on them. ‘But you joke. I’m going to die. It was your father who brought HIV…’ something which was not… Being annoyed every time. Putting on gloomy faces. Whenever it comes or you have made a mistake, ah, I can beat you man. I’m soon dying. For me, I can beat you and I can die today. Ah! I can’t even tell you how she was. EB: What was it like for you when you first found out that your mother had HIV? Ah those days, hah! EB: How old were you? Um? EB: How old were you when you found out? I was what… I think he was about… Sure, he was above 10. Even then, by the time I told them, I disclosed to them in a good way. They had to cry. They cried almost for two days, heavy one, but it came up to a month. But I was the one to bring it out, to make them to come out of that. EB: What do you remember of that? Ah, I can’t tell you. When Mom told us, ‘ah, you cool down. You see, I’m not going to die tomorrow. Haven’t you ever heard of people who are dying in accidents, motor accidents? You, don’t think of your future. Don’t think I’m going to die tomorrow. You be…OK, how do I call it? Mamgum.

I never gave them chance, but today, I give them chance. You see, outside, even we are building, but they are giving me advice, that let us build a house of three bedrooms: one bedroom for boys, another bedroom for girls, then another one, a master bedroom for me. That is from their advice. But those days, I used to not give them time. I was a decision-maker alone. EB: What did you know about AIDS when your mother said that she had HIV? What did you know about it? Ah, by that time, I knew that HIV, it was a dangerous disease. Once it attacks you, you’ll never get what? Cured. By that time, our neighbour there died of HIV. Huh. Then I saw her family got corrupt because of AIDS. Corrupt? Children they walk away, go this way. But for them, now they know. Even if I day, they have to stay here. So the family fell apart when the neighbour died. The children had to look after themselves. That’s what I knew about AIDS. It was a dangerous disease.

Dennis
Dennis

Ahhh… My interests: as you see here, I used to rear rabbits, but some animals used to come and attack my rabbits. After that I saw that I was rearing for nothing. I had to leave, but I’m still interested in these things, as you see here. I’m doing art. I’m the one who draw this. EB: Is this the house you would like to have in the future? Yeah, yeah, yeah. As you read here, if God wishes. And this is the house which I would wish to have in the future. There’s a heart on the house. Yeah…. Here the mom, we call him muzei. Muzei writes for me her hopes. She hopes me to be a good what, a good boy in future. She hopes, if I finish my education, I will have a chance up to university. EB: If you get the money. If I get the money. You will be smart as your daddy used to be…ah, I tell you, he used to be very smart. All the time he puts on coat as you see him here. She hopes me to be together with my sisters and brothers. You may seek for advice and good information from elders, your senior teachers, your tribal elders and your relatives… Abstinence is the best protection from HIV, STDs and AIDS. EB: What’s abstinence? Do you know? Using condoms. EB: Using condoms or not having sex? Oh, abstaining from sex. Yeah, abstaining from sex. Yeah. Abstaining is 100% effective pro… Perfect for adolescents. Perfect for adolescents and available and available to everybody at all times. Nothing bad can happen to you if you abstain and mat… Your body will grow and mature without sex. Yeah.

EB: If you’re writing these books for all four of your children, I mean, it takes up a lot of your time. It takes a lot of time. Even writing just one page, it needs time. You need to write when you are sober. OK, for me as I have many children, we can overtalk with them all, but if it mean to write, I need to tell him what I’m going to write. Yes, there are some things I can write when they are not around, but I have to explain first. Why do you have to explain first? They have to know. They have to know.

Writing a memory book is part of the so-called succession plan of post-test club members. The plan also involves writing a will. In the past, when parents died, their children would have been taken in by the extended family which would also divide up the properties and belongings of the deceased. But so many people have died of AIDS that the extended family can no longer cope, and a will ensures that the children are not deprived of what is rightfully theirs and it appoints a guardian to take care of them. Post-test club members who’ve completed a succession plan can apply for a grant from ICEA of up to 100,000 Ugandan shillings. That’s about 45 euros. Christine Nachimole, a mother of four, recently received one of these grants and she’s just started up a poultry business.

She was saying that she has the comfort that her children will continue with education because they are starting to give her eggs which she sells and gets money, like she mentioned all her children are in school. And what she didn’t also tell you is that she’s also looking after her parents in addition to six orphans of her relatives like sisters who also died of the scourge. So taking the courage to actively participate in the PTC activities has helped her to improve on her life, be able to look at her own children, the parents and those of the relatives.

ICEA also gives children who’ve dropped out of school or completed their education the opportunity to get vocational training in brick-laying, tailoring, carpentry and a wide variety of other professions. The idea is that when their parents die, the teenagers will be able to earn a living and provide for their younger siblings. With increased funding from Plan International, ICEA is now giving more grants to post-test club members, and growing numbers of children are receiving vocational education. Mackay believes that when anti-retrovirals arrive in his district, post-test clubs could also play a crucial role in educating people about the drugs and monitoring their effectiveness.

To convince someone that your viral load doesn’t actually allow you to actually take the anti-retrovirals is not also easy. Even if the government gives the anti-retrovirals to the people, there’s a need to sensitise the communities and come out with the monitoring structures so that whoever takes them, takes them accordingly so that we are able to monitor whether they are successful or not. So we are preparing to get our PTCs, the post-test clubs, to be trained in all issues surrounding administering anti-retrovirals. Then they also go to the communities to train the wider population.

But anti-retrovirals are still a long way off for many people in Uganda and elsewhere in Africa. So for now, people are just trying to get on with life, but they’re also preparing for the future.

Ah, this is the what? How do you call this one? If your mother dies, the one who will take care of us when the mother die. This is the one who will take care of us. We came to…We came to talk of that one, Ikera, who will take care of them. That is a part of memory project. You know, for me, I have chosen one who I think, the one who I thought she will do it. But for them, when I came to talk to them, they told me she’s the best. And at last, I realised that she can. She’s the best. Because at first I have chosen my sister. But I came to know…even she was the one who told me, that also she’s HIV. In a few days or months, she might even be first to die. Then we came to change, that she will be the foster parent when I’m not around. And she cares. She knows it. I had to go and talk to her and she have agreed. Even right now, she can take care. She’s very good.

EB: Dennis, do you look at this book a lot? Yeah, always in my free time. EB: Why is it so important for you? It educates me and it remembers me what Mom tell me in case when I forgot. And in case when you annoy me, I can get out my book. I can read some information as Mom told me here: I want you to be a kindly and good person. When I remember that, Mom told me, let me cool down. It remembers me a lot. Yeah.

“In case I forget” was produced by Eric Beauchemin. This has been a Radio Netherlands’ presentation.