AIDS in Uganda: Interviews with members of TASO, the first African AIDS counseling program (April 1989)
By David Blumenkrantz
Uganda has been remarkably forthright in its recognition and approach to AIDS. I returned to Kampala on April 2nd, 1989 to attend a one-week induction course with Africa's first AIDS counseling group, The AIDS Support Organization (TASO). Aside from reporting on Inter Aid's support for TASO, my assignment was to write a few articles that could be translated for use in the newspapers of certain European countries. TASO insisted I go through their training course before I would be allowed to conduct interviews and take photos. Their caution was understandable: while at first open to the press, they later found that the confidentiality of their patients had been compromised by the international media.
Uganda has been one of the African countries most ravaged by AIDS. Mainly a rural problem, the official number of deaths is well over 10,000, while unofficial estimates are as much as five times greater. After my training was complete, I was taken to Masaka, a small town on the banks of Lake Victoria, some 135km west of Kampala. This was where AIDS in Uganda was reported to have first appeared, brought to these unsuspecting shores either by truck drivers or fishermen. I was taken through a mud and wattle village by TASO counselor Gerald Ssenyondo. He had AIDS, and knew too well the burden it presents to families, including his own. Several of his family members had either succumbed or were HIV-positive, and numerous children were being left without parents. He had decided to spend his life helping others dealing with the same dilemma. We entered several huts and small houses, as Gerald introduced me to some of the people he personally knew who had either contracted symptoms of the HIV virus. In many cases I learned about those who had already died. It was a sobering and frightening prospect.
The AIDS scenario in Uganda has been complicated by the state of the country's economy, and insufficient medical facilities. In spite of a vigorous and consistent campaign by the government's AIDS Control Program (ACP) to educate the people about the causes and manners of dissemination, rural Ugandan traditions have hampered their efforts. Headway has been made toward convincing people that AIDS is something that can be scientifically explained, and controlled successfully through the modification of behavior patterns (such as promiscuity), but belief in the supernatural appears to still hold strong, especially among the less-educated rural population. Many still believe that AIDS (or "Slim" as it was originally called because of the way its victims wasted away) is a curse.
INTERVIEW WITH LUBUYE ERASMUS, TASO COUNSELING TRAINEE
Lubuye, 37, is married with seven children and lives in Masaka. Soft spoken, extremely polite and conservative in demeanor, he was one of the founders of the prohibitively under-funded Rural AIDS Association in Masaka. He supports the work TASO does and has been attending their counseling training course, with the objective of either becoming a TASO counselor, or at least using the knowledge he gains in his own struggle to help the people of his hometown. Several friends and acquaintances, and even his own sister died of AIDS in 1984, leaving him as the only survivor of the 13 children his mother gave birth to. The eleven others all died prematurely.
LE: I come from Rakai district, where many have died from AIDS. My sister died in June of 1984. And her husband had died in 1982. We didn't know then that it was AIDS. We gave him all sorts of treatments. When we had exhausted all the hospitals here, he eventually died in Gulu (northern Uganda), where there is treatment for cancerous diseases. We later came to discover that he had died of AIDS. Subsequently my sister died.
DB: Personal experiences such as this, in addition to watching others around you suffer must have inspired you to start the Rural AIDS Association.
LE: In Rakai we have seen this AIDS from the start. My sister is one particular case. For us, AIDS is not just "killing people." It is killing our people, our relatives, our age mates, our playmates: the people we used to go to school with when we were young, played football with, and studied together. Most of them have died.
We had two university-educated people in Buyamba, our village: myself and another man called Jason Bazzebulala, who died of AIDS last year. He was one of the founders of TASO. I'm now the only person left in my village with a degree.
DB: When did you start the Rural Aids Association?
LE: It had been there informally for two years before it was registered in October of 1988. It was created to raise the general public's awareness of AIDS; to stop it's spread, and to give moral and material support to its victims, their spouses, children and parents. Also to set up a self-sustaining project for the orphans; to assist in the research for a vaccine or cure for AIDS; to assist other bodies working in the same field. The funding has been from our personal savings. We started as ten people, now we are three. Seven have passed away, five from AIDS.
First, the bad thing about AIDS, is that it kills people badly. It wastes them. You pass through usually a lengthy experience of illness. There you need support. You need help with medicine, you need help in the form of economic support, to buy sugar, eggs, clothing, all those things. Then there is another bad aspect of AIDS. It sweeps the house, actually, killing the wife, the spouse, the children. You find widows, orphans, with nobody to support them. That is why TASO is important-- TASO is offering support to the victims-- to prolong their lives, to keep them happy before they die. And it helps those who survive, for example by paying the school fees of some orphans. That is a positive aspect.
DB: If you were to come across a person who has just discovered that they have AIDS, what would you say to them? What could you say?
LE: The objective would be for the patient to prolong his life. I would give him encouragement. Really what is happening is that some people are taking poison, to kill themselves. Our approach in the Rural Aids Association is to give them moral encouragement from the religious point of view. We tell them that "this is the world-- death is a normal thing, and there is the promise of new life after death.” So we tell them not to lose heart-- it is God's wish, and should be accomplished as he wishes, not as you wish. Secondly, we advise them to eat good food, as much as possible, and to have good health care, as much as possible. these are all relative, because we (RAAR) are not giving them money. As for medical care, we try to advise them where they can find the medicines give them relief.
DB: Can you estimate how many have died in your area?
LE: ACP estimates that around 1,200 people have died in Rakai district, but this is a very conservative estimate, it is maybe five times that many. Most people do not report the disease: they die in the villages.
DB: Concerning the social, moral and ethical side of AIDS: what was the early reaction to AIDS when it first appeared in your village and surrounding areas?
LE: We thought it was witchcraft. That was the general feeling. Here we have a type of witchcraft which when you are a victim, it is said that is sucks the blood from your body. The one who sends the witchcraft sends "mayembe," or horns, to suck the blood from your body so that you shrink, you become small. That's why this loss of weight was associated with mayembe, as an early explanation.
DB: They thought it was coming from Tanzanian traders?
LE: It was both ways, because even the Tanzanian people were saying it was the Ugandans who were sending it. So it was ignorance, you can appreciate--each fearing the other.
DB: Personally, what did you think it was?
LE: I'm a religious person. And secondly, it didn't happen so clearly, so I didn't believe it was witchcraft. The symptoms were varied. Diarrhea-- I thought it was typhoid. And people were very reluctant to go to hospitals. The cost of treating typhoid is very expensive. Fever-- I thought it was malaria. Coughing-- I thought it could be a form of TB. The skin rashes confused me, because I had never seen them before.
DB: Had you already heard of AIDS when these symptoms started appearing?
LE: In fact it was because of the skin rashes that I wondered. I had read in a news magazine called "Newsweek," where they had talked of AIDS and Karposi's sarcoma. I tried, but I never pictured that it could be the same, because I had never seen a person who has been identified as having it. So I had heard of AIDS only through this one article, but I never took it seriously, because it was a scientific article, about a disease that interrupts the immune system. It wasn't about people, just the virus.
DB: Those suffering from AIDS can have many symptoms at once. This must have caused alarm to the people. How did they react to seeing their people deteriorate so horribly?
LE: First they took the people to the witchdoctors. And in fact in 1983 I also took my brother-in-law there. I found myself taking him there! We were treating the disease, and it was not going. To be sure, if somebody said, "I can treat that disease," being a witchdoctor or not you would go there, if he is providing a remedy.
DB: And it helped?
LE: Yes, it relieved them for some time. You know AIDS is a complex disease. If a person was taking herbs or some medicines, he might feel relief for two weeks, but then it comes back. So I didn't know if it was because of the herbs, or because of the medicine that he was getting some relief.
DB: Do you recommend traditional healers, herbs?
LE: We also encourage them to go there, that's the truth. If she thinks that she's bewitched, she'll be satisfied if she goes to a witch doctor. Even if a person has been receiving counseling . . . when the pain is on, and somebody offers help that is from a witch doctor, you know this is a difficult thing . . . she will really succumb to it. If the scientific way is not working, then what else? I had a step-sister who gave birth last Christmas here in Mulago Hospital. She was suffering from AIDS, and was treated there for a month. Still, her diarrhea continued. On the eleventh of February, she was brought to the village. On reaching, she told her mother that they had given her all the medicine in the hospital. But it had failed. So her mother brought the herbs, which stopped the diarrhea. That’s the truth. But she dies, and we buried her only three weeks back . . .
DB: Did you know the first people in your area that contracted AIDS?
LE: I was living in Kyotera. Certainly they were promiscuous-- they were trading people. I mean to say, when you have money, it is very easy to indulge in other girls because you can go to hotels, go to lodges, sleep outside your own home. Only one man among the first five people to die of AIDS was not a trader.
The interesting thing-- when those people caught the disease, they had the money, and were brought even as far as Mulago Hospital in Kampala. They went to all the hospitals. Urine and flesh samples of one of them were taken as far as America, Canada, London and Germany. They received good care. Even the nurses cared for them: they never knew that this was a deadly disease. No one knew, until the results came from overseas, saying that this was a new disease called AIDS, and there was no cure.
DB: So it was only when the results of these tests came back that the people of Uganda realized that this new disease called AIDS had arrived. But they didn't know how it was caused and spread. When did that news start coming?
LE: The first thing we should note is that the government then did not want that information made public. So it was only through intimate friends that we learned of this disease. It has been only since the new government in 1986 that there has been open debate and talk about this disease. That is why you have to ask TASO for permission to go and see things in Masaka and Rakai. There are no secrets about it. No one is prohibited from going there, but ACP may want to screen the photographs before you take them out of the country.
DB: So by 1986, when it became a subject of open discussion, a lot of information about AIDS that was already available to other countries became known to Ugandans, even in the villages. People discovered that it was a disease that was spread easily through sexual contact, and so on. What was the reaction to that?
LE: I beg to correct you on one point. The earliest information coming in from abroad, stressed that AIDS was homosexually transmitted. And here there were no cases related to homosexuality. So there was first confusion. People believed that our disease "Slim" was not the same as AIDS. It was only when samples had been taken from several people and sent abroad was it confirmed that it was the same disease. Now after that of course, the people had to be told that sexual intercourse is a mode of transmission. For the others abroad they were saying that is was homosexuality, but here there is very little incidence of homosexuality, if any. It was then necessary to convince people that even "normal" sexual intercourse was causing Slim.
DB: When it became known that this was a very contagious, incurable disease, with a horrible death, how did people react? Was there this ignorance where people were afraid to shake hands with someone with AIDS?
LE: At first there was general fear, because this was a horrible disease, which was incurable. Secondly, since it was a new disease about which not much was known, including how it was transmitted, there was fear of those who were victims-- trying to avoid them. In fact when my sister was in Masaka hospital that was when the Slim people were separated for the first time from people with other diseases. And when we were put in our own ward, the doctors and nurses would not come in-- they feared to touch the patients. But gradually the situation improved. What was happening was that the disease was amongst us-- and the doctor is a part of us. It could be his sister. A nurse, it could be her brother that was sick. So you can't avoid touching them-- you can't build a house for them, if you have been living with them. So eventually, there was no way out--
DB: You're saying that because the disease had become so common, there was no way to avoid intermingling? This, rather than the information that was being made available, broke down the people's reluctance to handle AIDS patients?
LE: Partly, I'd say, and partly the information. Because you know earlier on in our history, during the colonial period, we had another disease, which was related to smallpox. People who had that certain disease were caught, tied and taken to forests until they died, eh, so that the disease could not be spread to others. Because that disease could be spread by breathing. But with AIDS, because the information came in later saying the disease cannot touch you through casual contact, people came to appreciate the situation.
But I can't say that people are mixing freely. For example, when you introduce someone as being from Masaka or Rakai, people try to look closely at you, to see if you might also be an AIDS victim. Of course, we know it! Even if they see the buses that come from Masaka, they say, "Ah, those are the buses that have brought Slim to Kampala!"
DB: So people in Masaka and Rakai have sort of a stigma about them?
LE: It's a foolish one, thinking that Slim is in Masaka and not Kampala. And it's a dangerous one my friend, because people here tend to go on as if this disease is limited there, when a person from Masaka can move to Kampala twice a day, and leave the disease here. So this is a false sense of security.
DB: AIDS is a phenomenon that is changing lifestyles around the world. How has it affected the traditional life structure of your people?
LE: On the official level, some are now saying that before you marry your partner you should both check you blood. I think that hasn't worked. There are limitations: not many machines to test the blood, and also the people themselves have not reached a point of being frank enough where they wish to know if they have it or not. The general situation: the parents are worried about their children. What some people have tried to do is to encourage children of marrying age to marry rather than stay single. I know of cases where parents from different families have tried to match up children to marry at an early age. You have to realize two things: One, to say, "don't indulge in sex," this goes against culture. Here you see, the relationship between the father and the child is strictly official. You can't tell your child (here in Buganda) certain things about sex or marriage-- it's abnormal. If I talked to my son or daughter about these things-- even the word sex-- it would sound very abnormal.
DB: You mean abnormal in a crude, nasty, or totally unheard of sense?
LE: Crude, to the extent of being considered mad.
DB: And you personally?
LE: The way we grew up in our traditional culture, you are brought up in that official relationship. Your father is father-- there is nothing like talking about sex, and you are not supposed to show your father the girls you love. That official relationship goes on such that it is illegal for your father to touch your wife. We say that if he does, he will get a nervous disease so that he dies shaking like this. (Shakes) Even today, in Kampala, everywhere in Buganda, he cannot even enter in my bedroom, and I cannot enter in his.
DB: This indicates a conservative, strict morality.
LE: And with that in mind, you cannot go and tell your son, go and marry this one, or don't have sex. That is why I say that there should be the involvement of all the people here in these education efforts rather than leave it all to be done by outsiders. Because with the outsiders, what is right in their culture may not be right in ours. Once when were burying a certain person who had died from AIDS, I was approached by someone who asked in a whisper, "What is this? How can teachers tell our children about sex? Have you ever heard of this? It is a nuisance!" She was referring to the sex education now being taught in the schools. And in my experience, as I grew up, I could never think that my father sleeps with my mother. The act of reproduction-- you are left to find it out your own way. For many of my early years I knew only that a child was taken from a pregnant woman by these local midwives. But we never knew the details of these things. I remember the embarrassment when in biology we had to learn about these things.
DB: This was secondary school?
LE: Yes, but these days, they learn these things in primary school-- sex education is being taught only because of AIDS. It is entirely new, and in fact in some schools it hasn't yet started.
DB: All of this points to the need to actually change the way the family has traditionally been structured, hence the need as you say for the changes to be stressed from the inside rather from outsiders to whom the average villagers cannot relate. What other factors are important in this same respect?
LE: AIDS education should be taught through the established, normal channels-- in the schools, by the parents to the children, in the churches, by people known in their communities who can pass on knowledge at important, well attended events like funerals. This is better than just broadcasting over the radio from Kampala. We need to have people trained, so they can spread this news to the teachers and priests. We need people to travel to other countries to bring back a wide approach they can share. I'm not a sociologist, but my observation is that here, sex proves two things: it is for reproduction, and for manliness. So you have people interested in sex because it shows that you're a man. You marry more wives-- what is a man? A person who is very powerful, has many wives. You have one wife-- are you a pigeon? A man is supposed to live like a cock, with many wives.
DB: Polygamy is accepted in today’s society?
LE: Yes! It is very right, actually. In fact it is one of the difficulties that religion has to overcome.
DB: You being a religious man with a Christian background, do you have a conflict there? Are you a polygamist yourself? Do you feel a desire to have more wives, but your religion is stopping you?
LE: For me, there are some economic considerations. With my education, I know the standard of living I need for my family. And I can't make it. For example my salary is only 13,000 shillings-which is very big by Uganda standards. But 13,000 shillings is only 60 dollars per month. How can you make it on that? How can you afford two or three wives? If it were not for that, there is no problem. Of course of late, polygamy is wrong because of AIDS.
DB: You have some interesting thoughts on the difference of the role of fornication in the Western world and in your own culture.
LE: It is my observation that in the West I think there are more ways of expressing love. From what I have heard and what we have seen from videos and so on, it is normal for a white man to go to bed with a woman, and not do sex with her. He can be contented with a kiss, he can be contented with romance. But this is very unusual here.
DB: Are you saying that every night you make love to your wife?
LE: No, but I mean a strange woman, or a new one. Even that girl will think you are a coward if you sleep with her and do nothing. But I think you have a different approach.
DB: Why did you relate that to the AIDS situation?
LE: I meant to point to the difficulty we have in stopping people from having sex. It is more difficult with people who are so inclined, than to stop people who have other avenues, other forms of expressions for their love.
DB: You haven't taken the women's point of view into consideration, when talking about the "manliness" of taking many wives and being sexually aggressive. Are you saying that the average woman accepts, even expects this social situation as the status quo? Do you think that this mutual attitude is being toned down now with the AIDS crisis?
LE: I think it's being toned down, but in a negative sense, because it is not being replaced. That is why I feel that our approach is lacking. If you tell people to stop making love, what else to do? You are not giving them an alternative. So the approach so far is lacking.
INTERVIEW WITH NORINE KALEEBA, CO-FOUNDER OF TASO
DB: Can you tell us of your personal experience with AIDS that inspired you to start TASO?
NK: My husband was diagnosed with AIDS in June of 1986, in England. Partly because of the kindness and care we received out there in England, and the kindness of certain people, notably the hospital staff, and the assistance from one particular Roman Catholic priest, I sort of felt that if I ever made it through this period intact, to where I had taken the challenge, I would start something similar. The whole idea of founding TASO was actually sown by my late husband as he lay in bed suffering. He always talked about the need to have a facility for people, where they could go to have their questions answered, and the need to have a facility which would supplement the meager facilities we have here. So he was actually the person who "founded" the idea. But he was quite ill, and he never made it to be there when TASO was founded. It was after he died that I was able to make contact with two young men, both HIV positive, one of whom had AIDS, and I was able to sell them the idea, and we officially started in November in 1987. But prior to that we had held numerous meetings in our houses, planning what we felt was a good idea. But of course the biggest handicap was finance. It was not until I was introduced to Colin Williams, the Ugandan director of Action Aid, who took interest in what I had to say and encouraged us to write a project proposal, which he submitted to Action Aid in London, and we received our initial funding, and were able to start. .
DB: I imagine this experience has turned your life around.
NK: That's right, yes. I was trained as a physiotherapist, and by the time my late husband Chris was diagnosed with AIDS I was principal, or head teacher of the school of physiotherapy here in Mulago. After that, my whole orientation and my outlook completely changed. I had to undergo training, as you can appreciate-- you really just can't get up one morning and start a counseling service. I underwent training in the UK. That, coupled with my personal experience, got me ready to start.
DB: What are TASO's greatest needs today, both materially and otherwise?
NK: TASO's greatest strength is that it started as a grassroots organization, and was initially run by people who had been personally touched by AIDS. They had been body-positive themselves, or had had partners who had AIDS. But by the special nature of the disease AIDS, many of these people have passed away. So what started as TASO's greatest strength is now proving to be it's weakness, in that we are very short of personnel to run the organization.
Materially, I suspect we will always be short of materials like medicines, because the demands for medicines-- and when I say medicines, I'm talking about medicines that alleviate some of the symptoms. We are not into experimental, anti-viral drugs yet in Uganda. We are aiming at making the life of a person with AIDS as comfortable as possible. We are also having to deal with AIDS against an economic situation that leaves a lot to be desired. And we find that a lot of our people with AIDS have multiple needs, so that when we go into a counseling situation, we should be prepared to meet some of their material needs. So all materials that go to the day-to-day life of the person, are very urgently required. I'm talking about nursing materials like soap, basic foodstuffs, some of which I'm happy to say are obtainable here, but by the nature of the economy, some of our clients are not able to buy these foodstuffs, because they are not earning a living anymore.
DB: How has TASO been accepted throughout the government and other agencies concerned with AIDS prevention and control?
NK: We had a very big advantage over quite a number of other organizations wanting to start in other countries, in that our government took an open stand about AIDS right from the beginning. So when we wanted to start TASO, we had to seek permission from the AIDS Control Program (ACP), which is the government body, and we were given this permission without too much hassle. We have received continuous support from the ACP-- some financial support, but what we needed more from them is overall approval, and this we have had, and encouragement and recognition. This has allowed us to project our image, not only nationally, but also internationally, to the extent that quite a number of visitors coming to Uganda wanting to know activities around AIDS get referred to us by the national program. I personally for example have been appointed a member of the national committee for AIDS control. I also represent the nongovernmental organizations on the ethical and patient care subcommittee of the national committee, and I've represented Uganda twice now on the WHO-organized counseling and training sessions.
DB: AIDS in America was at least in the beginning predominantly a homosexual phenomenon. How do you relate the two situations?
NK: What I saw of the situation now is that the trend is changing-- new afflictions among white gay men are on the decrease, but there is a emerging picture of the heterosexual spread among drug users, and also among the black and Hispanic lower-income groups, which is essentially very similar to what is going on here. Of course, the two situations are different, because the incomes are different, and the whole set-up is different regarding treatment facilities.
DB: Do you seek out your clients, or do they come to you?
NK: The majority come to us. When we started, we had to say, we couldn't go out to seek. Because the problem with AIDS, is one that even if you suspected that I might be HIV positive, really there was no way you could come and say, "Oh, I think you might be," even if we were close friends. But what we have done is to publicize ourselves, and tell people what we can offer. And we find that people come to us spontaneously. And we have endeavored to respect confidentiality-- as you have seen, there is no label on our office building, so if there is somebody very sensitive in that direction, they could come without the fear of being labeled.
DB: Do you encourage your clients to have their families tested?
NK: This is an issue that we discuss at length when we are in a counseling situation. We don't advise anybody to do anything about AIDS. But we offer people facts, and allow them to make an informed decision.