The Age of Aids [home page]

interview: noerine kaleeba

[photo of Noerine Kaleeba]

In 1986, Noerine Kaleeba got a call from England, where her husband Christopher was studying to get a master's degree. Come quickly, they told her, your husband is very ill. When she arrived from Uganda, she was devastated by Christopher's deterioration. Although she was able to bring him home, Kaleeba was forced to care for her husband herself because no health care workers in Uganda would touch him. Christopher died of AIDS in January 1987 and in her grief and outrage, Kaleeba founded The AIDS Support Organization (TASO) to educate Ugandans about HIV/AIDS and to combat prejudice and stigma. TASO has reached more than 80,000 people in Uganda alone, and its programs have been exported to many other countries. Here, Kaleeba -- who now has 26 AIDS-orphaned relatives living in her house -- tells her story and recounts her interactions over the years with Ugandan President Yoweri Museveni, President George W. Bush and Dr. Jonathan Mann, the former head of the World Health Organization's Global Programme on AIDS. "I have met President Bush twice," she says, "He strikes me as a very brilliant, very passionate and very caring person. But when I contrast the President Bush that I have met with the policies and practices that are coming out of the United States, I can't reconcile it." This is the edited transcript of an interview conducted on May 5, 2005.

In the early days in Uganda, people used the word "slim." What was slim, and why did people use that word for it?

In the early days of recognizing HIV in Uganda, people who were diagnosed with AIDS were rapidly losing weight, rapidly losing the hair on their body and becoming really, really slim. That's where the disease got its name, and really also got its stigma.

Why stigma?

The stigma that was associated to HIV I think had its genesis in three areas of taboo. The first one is sex, because it was recognized early that it was a sexually transmitted disease. Sex is something that is done, not spoken about. The second one was death, and especially death related to young adults, because in many African countries and in Uganda in particular, death is accepted generally for the elderly and children, but this was a disease that was killing selectively young adults. The third one was soon it began to be connected with homosexual sex. So when you added the three taboos, the stigma was amplified.

And then, of course, perhaps I should add the fourth one, slim, where the name came from. People were kind of thin and really, really haggard and looking miserable. Death, I think, is generally accepted, but the manner in which a person dies and the physical appearance and the lasting impression the person has on the family before they die also causes a little stress within the family.

[Do you think the fact that it was associated with homosexuality kept people from recognizing the seriousness of AIDS?]

Homosexuality on the whole is frowned upon [in Uganda] and is illegal. All of us growing up are told, almost indoctrinated into believing, that it doesn't happen. Yet all of us who grew up in Uganda know that it does happen, and there are people that we know that have same-sex relationships. ... The combination of homosexuality and the fact that it is illegal and the fact that we were all groomed to say that it doesn't happen led in the early days to a degree of denial that was really catastrophic.

But even in the early days in Uganda, young women were being infected as often as young men, weren't they?

My initial reaction was absolute denial, that they must have made a mistake, because how can my husband, who wasn't white, who wasn't homosexual, who wasn't gay, how could he have AIDS?

In the early days I think there were equal numbers of men and women infected. There was a [distinct] difference [from the United States].

Tell us how, in your phrase, AIDS came into your house.

I often relate to a date in 1986, June 6, when I received a telegraphic message from the British Consul that Christopher, my husband, who had left home a year before to go to the U.K. to study for his master's degree, was lying in hospital critically ill and that I should arrange to go to England to be with him. It didn't mention anything about AIDS. But subsequently, when I went to the British Consul office in Uganda, in Kampala, after three or four days of kind of protracted backwards and forwards conversation, I threw a tantrum, and I insisted on speaking to the doctor on the telephone in England. It was during this telephone discussion that he told me that my husband had been diagnosed with AIDS. So that is, I often say, when it first entered my house.

And how did you feel?

My initial reaction was absolute denial, that they must have made a mistake, because how can my husband, who wasn't white, who wasn't homosexual, who wasn't gay, how could he have AIDS? At that time even I, as a physiotherapist working in Mulago Hospital [in Kampala], I had selectively read what I wanted to read about HIV and AIDS. The early information that was becoming available was in relation to white gay men in San Francisco, so I said, "They must have made a mistake." I told my friends; I told my friends at work; I told his family; I told my family.

president Museveni

Part One: Chapter Six The Power of Leadership


By the time I came to the conclusion that this wasn't a mistake, I was already out with the information. And then I was really devastated, really devastated. Following the devastation, then I came to the realization that this was going to totally devastate my family, because he was very, very ill when I eventually went and met him in hospital in England.

[What did you find in England?]

I traveled to England, and Christopher had been admitted at Castle Hill Hospital, a teaching hospital in Hull, in England. Christopher left home to go to school the most handsome, tall, proud, really full of hope, 87 kilograms [about 180 pounds] of a man. But the man I met at Castle Hill in a hospital bed was almost skin and bone, 42 kilograms [about 100 pounds]. He was very, very ill, frail, hardly able to lift his arm. ...

What were his symptoms?

By that time, he had been diagnosed with cryptococcal meningitis. He had a constant headache and fever, but he also had chronic diarrhea. He had been having diarrhea for months. He wouldn't take anything by mouth that he would retain. He was vomiting. He also had a very, very peculiar skin rash, what we know today as candidiasis; it covered his entire gut. He also had some liver problems that had arisen. So he had, I always say, almost everything in the textbook. Perhaps what he didn't have, what I have seen over the last 20 years, is tuberculosis.

And how were his spirits? Did he realize what was happening to him? Was he scared, or did he know it was AIDS?

Yes, he knew it was AIDS, because after the test was done, he was given counseling, and he was given his diagnosis. He was actually in a hospital that had a very, very special, compassionate team. He had been treated so well, with much love and compassion, and he also had his university professor who had at the time come in as his next of kin because he was living there all by himself, and he was very, very supportive.

By the time I arrived in England, he already knew he had AIDS, and when I arrived into the room he recognized me, and he said, "What took you so long? I have been waiting," because we had serious things to discuss.

Then he began to give me instructions as to what should happen and what shouldn't happen and what I should do with the children. But he also said something very important. He said: "I really hope I live long enough to go back to my country, because I must do something to educate people about this disease. Otherwise it's going to kill many more people, because if I have it, then many more people already have it."

So Christopher said he wanted to go home, and you took him home?

I did eventually. It was so difficult for me to make the decision to take Christopher home, because after I arrived in England, I sat with him for about three months, and during that period I learned all that there was to learn about the disease. The hospital made sure that whatever information from wherever was made available. I was actually even facilitated to go back to London from Hull and visit the Terrence Higgins Trust. This was really very, very early [in the epidemic], and I met [the Trust's Chief Executive] Nick Partridge. I sat down with him, and I asked him all sorts of questions.

By the time Christopher began to argue seriously about going home, I already knew that if he went home, he didn't have a chance of living. But I also knew that if he stayed in England he might live, because he had the best care, and I knew that at home we couldn't afford the care that he was accessing in England. So I was very hesitant to allow him to go home, but he was very persistent.

So you knew that when he went home he would die?

I knew that when he went home he would die, and he knew that, too. We talked a lot about it, and eventually what I think made [the decision] for us was the fact that the children had stayed in Uganda. He kept saying: "What kind of life is this? I am here. I can't be with my children. I can't be with my family. I know that if I go home I may die, but I might as well die having been with my family." So eventually, after that kind of argument, we agreed to go home, knowing that he really didn't stand a chance. We arrived at home towards the end of November, and we lived in the house at home loving each other for a month, but around Dec. 15 he collapsed, and we had to take him to hospital, and he died Jan. 23.

And when you came home with Christopher, how did people react?

What I wasn't prepared for was the degree of ignorance and the degree of fear, because while we had been in England, the Ugandan government, under the [leadership] of President [Yoweri] Museveni, mounted a vigorous awareness campaign which let people realize that Uganda had a big problem with AIDS. This campaign, which went through the media, was very aggressive. What it did was to generate such a high degree of fear in people's minds such that it became apparent that people were so afraid and also very curious to see who has AIDS.

When we returned home, there were so many people who turned up at the airport to actually see what an AIDS patient looks like. I was very angry, because many of the people who turned out, I didn't know them, and I was aware that they had turned out at the airport out of curiosity, not out of compassion, because they didn't touch my husband; they didn't come to shake hands. They just looked curiously to see what he looks like. That made me very angry. It was, I suppose, my first glimpse at stigma.

And how did Christopher react to this? Was he hurt?

He was very hurt. But I think this hurdle strengthened his [resolve] for the mission that he had appointed himself to: to do something about the disease before he dies. I recall that, when we were in hospital, he asked me to go in the hospital and see if there are other people who had AIDS that had been admitted in the hospital in Mulago in Kampala, and that's what I did. That's how we got to sort of mobilize and form ourselves into a support group. That's where the seeds of TASO [The AIDS Support Organization] came from. ...

So Christopher had come home for a purpose. What did he hope to do, and what was he able to do?

While in England, he had been very insistent about being able to go home to Uganda, to make a contribution to spreading information about this disease and helping people understand about the disease. He wasn't aware about the stigma at all, because in England we were never exposed to any stigma. When he got home, he did succeed in reaching other people who had been diagnosed with AIDS who were patients in the same hospital as he was. We invited these people who I found to his hospital bed, and he began to inform them about the disease.

But more importantly, he was concerned about helping families realize that you [cannot] catch AIDS by nursing the person you love. Actually, if AIDS had turned out to be contagious, I think as a family we would have been all infected, because the children, who were very young at the time, would jump into his bed and would hug him and hold his hand. This was a very visual example to the families that were coming to congregate together. ...

This is a personal question that you may not want to answer, but your husband caught AIDS. Presumably he must have been unfaithful to you. Did that put stress on the relationship? You hear cases of wives picking up AIDS and throwing their husbands out of their houses in Uganda.

I didn't say this before, but my husband was infected through a blood transfusion. We didn't know at the time, but looking back, we came to the conclusion that this must have been the source of his infection. He was run over by a bus in 1983 and bled profusely, and he was taken to the hospital, but at the time there was a war raging, and there was no blood within the blood bank, so relatives were invited to donate blood. One of those people who donated blood was his own brother, who later turned out to have been HIV positive. The unit was taken directly from Godfrey to Christopher, but of course at the time we didn't know. Godfrey died at the end of 1985 in the hospital, emaciated, skin disease, diarrhea, vomiting, and he was actually diagnosed in Mulago.

But ... as we were going through Christopher's illness, I didn't even have space to worry or ask where did this disease come from, because the immediate worry was that Christopher's dying. ...

But also, usually when I'm discussing Christopher's case, I don't discuss this, because I always say it doesn't matter what the source was; what matters is that this person can be cared for. But I know that that has been a big source of problems in families, thinking he must have been unfaithful, and why would he bring this disease into us?

Also, I must say I did take an HIV test quite early. It was a requirement for me before I went to England to be with him, because they said, "Since he has AIDS, would you like to know your status yourself?" At the time I didn't know what they were talking about, and I said, "Of course," and I took an HIV test, and it was negative. But when they told me the results I said, "What does that mean?" It didn't really mean much. Today it means a lot, because I live with what has been described as survival guilt. I live with the pain of knowing that he went through that pain, and I didn't have the opportunity to share it. ...

So Christopher died in January, and in time, you came to form TASO. What is TASO?

TASO is short for The AIDS Support Organization. Today it is the largest grassroots organization formed by people directly affected by AIDS, primarily for care and support to those who are infected and educating the family how to care for them, and also using the experience of the infected person to prevent spread of the disease. Initially what we set out to do was primarily for ourselves -- to find support; to find the answers to questions that come to you when you or your loved one is diagnosed; to find another person who has a similar story to yours. But we soon found that unless we make a difference in the levels of basic information about this disease among health care workers and within the community, that the compassion that we were seeking so much was not going to be possible.

For example, during the time that Christopher was admitted in Mulago Hospital, the health care workers did not care for him. They were scared. They never even stepped into the room where he was. I used my nursing skills, and with the help of my mother-in-law and my good friend Mary, just among the three of us, we nursed him until he died. If a drip had to be changed, we changed it. If his soiled linen had to be changed, we did everything, because the nurses didn't touch him. But soon I realized that the reason why they didn't is because they were frightened, and they were frightened because they didn't have the correct information.

So in forming TASO, and after forming the base of support for positive people and the affected families, we mounted a vigorous campaign to work with the government to train health care workers, to give them correct information, but also [to] give them skills that will enable them to change their attitudes, which at that time were predominantly negative towards people with AIDS.

Describe some of the activities TASO does to spread the message today.

TASO has used its advantage of caring for people and bringing them from the point of despair to the point of hope, and then grooming these people to use their past experience through drama, music and storytelling within the community to begin to drive the process of information and attitude change, because information in a country like Uganda comes from different sources -- from the media, but also from a positive person who can share about how they exposed themselves but also shares a message of hope: that for maybe three or four years I was broken, I was down, I was totally devastated, but through this intervention here I am. I am alive; I am hopeful. So there is hope beyond an HIV diagnosis.

That way of looking at information and dissemination is very important, because if you look at a country which is very heavily [affected] by HIV, unless people can see hope, there is a possibility that they might say: "Oh, my goodness. What can I do? Everything is so bad. The infection rate is so bad. Regardless of what I do, I'll get myself infected."

We found that by grooming these young people and helping them share their story, using a medium that is very well understood in the community, it amplifies the message and brings it home. This has been one of the key successes of the Ugandan response to HIV -- positive people, families who have been affected, who share their experience and exude hope, because hope is a key ingredient to survival.

Did President Museveni give great support for setting up TASO?

President Museveni was one of the key pillars of my support system. I remember the first time I went to see him, I actually bulldozed myself into a team that was going to see him. ... I go to this meeting with him, and after all the officials had spoken, I said, "Mr. President, my husband has just died of AIDS" -- this was in July 1987 -- "and I want to do something about this disease, so I want to work with these government officials."

He looked at me and said, "Oh, your husband has died of AIDS?" I said, "Yes." And he said "What about you?" I said: "Mr. President, I don't know. But all I know is that if I have AIDS, I would like to do something about it before it kills me." So he turned around to [the Ministry of Health's Commissioner of Health Services] Sam Okware and said: "Put that Noerine Kaleeba on the committee. She has to be on the committee."

So right from then I became an official of the Ugandan response, and that opened an early space for affected persons to be part of the entire response in the country.

President Museveni was very farsighted and quite remarkable in the amount to which he took the lead and campaigned for the acceptance of AIDS as a fact of life. How would you describe President Museveni's achievement in 1985, '86?

President Museveni had an early advantage in that by the time we recognized AIDS, he was a hero. He had just delivered us Ugandans from the era of dictatorship, so everybody was looking at him. He made a very smart decision to say, "OK, I have just led you from one evil, but there's another evil waiting." He said at one meeting that I was at: "You people, Ugandans, you know that if we rise and challenge an evil it can't succeed. Now I'm calling upon you to rise and challenge AIDS." He had a very captive audience, and people believed in him.

He took advantage of that. He's a smart guy. When he did that, he also made it politically correct for anyone to welcome talk on HIV and AIDS, because if the president has sent out a call, if you are seen working on the issue, it is politically correct. There were other countries where if you were seen to be working on HIV and AIDS, you were immediately a subject of suspicion: "Why are you working on AIDS? Why are you saying that we have AIDS in this country?" It was a very, very interesting contrast that I saw very early.

[What was the reaction in other countries?]

The advantage we had in Uganda, of early open attitudes by government officials, was unfortunately not taken up by several African countries. I recall going to South Africa in 1992, I think. I was invited by Winnie [Mandela] because she had read about what we were doing in TASO and what we were doing in Uganda. ... When I was speaking from church group to church group about this disease that is coming and had the potential to devastate Africa, I remember the ridicule.

People just laughed -- laughed. I remember in one church meeting, one woman put her hand up and said, "Well, can you just tell us how much you have been paid by white South Africans to spread this rumor about a disease, their disease, which you are saying is also affecting us black Africans?" And I said, "Well, I don't know about black or white, but I know the disease came to my house, and I know that in my country, it's not selectively affecting people."

But at that time there was a total denial in South Africa. There was denial in Kenya. I went to Kenya one time and addressed a meeting at the university, and the university students said: "The problem with Ugandans is you don't have secrets. That disease is very personal. Why do you come here and share with us about your husband having died of AIDS?"

The time lost in Kenya and in South Africa is telling today. Kenya is taking up the issue, and in South Africa the people are really working hard. But if they hadn't lost that time, I feel we could have been much, much farther than we are today.

It could have saved many lives?

It could have saved many, many lives. …

[What do you think of the United States' recent approach to fighting HIV/AIDS?]

I personally am trying to understand the dynamics coming out of the United States. I must say I have met President Bush twice, and those two times that I have met him, it has been in a really closed space where there hasn't been media, and he strikes me as a very brilliant, very passionate and very caring person. But when I contrast the President Bush that I have met with the policies and practices that are coming out of the United States, I can't reconcile it. My only hope is that President Bush and the U.S., as a leading country, will get to a stage where they can come up with a policy and a system.

There are many axes that I have to grind with the president; for example, the policy that HIV-positive people cannot enter the United States without a waiver. Talk about leadership. How can you be a leader when you practice an open abuse of human rights? I have a colleague who I work with here. She often has to go to the States, but each time, she has to declare her status and apply for a waiver, or [has] to lie about her status. I think the United States has a lot of work to do to reconcile its role as a global leader with its practices, the practices of discrimination, but also the messages that the U.S. are sending out with regard to prevention.

Editor's note: Uganda pioneered the ABC approach to prevention, which stands for Abstain, Be Faithful, and use Condoms.

The ABC: Now, speaking as a Ugandan, I know that what has brought Uganda as far as it is today has been A, B [and] C together, not one of them singly. But what I hear now is, "Oh, now it's just A and B" -- abstinence and being faithful. There is some kind of a campaign to be quiet about the condom discussion, which is a disaster. It's a real cocktail for disaster, and I think for a person like me, who has been personally robbed not only of her husband but of many of my siblings, many of my friends, this debate of condom or no condom really makes me angry, because I know for a fact my husband had HIV; I don't have HIV. If you ask me to put it on record what actually protected me from his infection, it was a condom. We were using condoms for birth control.

We didn't know he had HIV … until he was diagnosed. I know for a fact if we hadn't been using condoms, I would have been infected by now. I also know that this divisive debate about whether abstinence works or doesn't work -- yes, abstinence works for some people for some time, but you can't say that abstinence works for everybody all the time. So really, we should stop this debate, I feel.

Who was Jon Mann?

Jonathan Mann was a star, the first scientist I met with a heart of gold. I say this emotionally because I met him during the critical time after my husband was diagnosed. I met [Mann] here in Geneva. I came here to Geneva to meet him without an appointment. I just arrived. Those days, I was really being driven by just the moment. I arrived without an appointment because I had heard, I had read that the World Health Organization had appointed a man, Jonathan Mann, to lead the first global program on HIV and AIDS, and this man was in Geneva, and he was beginning to organize a program, and my interpretation of that was that he must have a cure if he was within WHO.

So I arrived here, and I went straight to the main building of WHO, and I asked to see Dr. Mann. I was ushered up to the seventh floor. I met his secretary, and I said, "I have to see Dr. Mann." She asked me if I had an appointment, and I said, "No." She said, "Well, you can't see him," and I burst into tears.

I don't think she had ever seen a big African woman dressed and in tears in her office. She didn't know what to do. As she was fumbling, Jonathan comes in through his office and finds me in tears, and he asks me, "What is it?" I say: "I have to see you. I have to see you. My husband is dying of AIDS, and I have to see you." He was apparently going to a meeting -- which he never went to, by the way. We sat for four hours, and he talked with me, and at the end of that time, I was calm; I was collected; I knew a lot more. He told me that my husband was probably going to die, because at the time there was no cure.

But he also said that this disease would take more out of humanity than life itself; it will [destroy] our dignity. The biggest evil that this disease poses, he called prejudice. I didn't know what he was talking about. He said: "You don't know what I'm talking about, but there is prejudice that is attached to this disease that we have to fight. Will you help me fight it?" And I said, "Well, Dr. Mann, probably I'm also going to die soon, but if I live and if there's anything I can do, I'll do it." That was my first meeting with Dr. Mann. By the time we finished the conversation, it was dark. ... He sowed a seed in me that day which I'm glad germinated and made me what I am today.

The day [Mann] died, he had sent an e-mail to a few people around here. ... I was one of those people that he was consulting with regularly, as I was developing TASO in Uganda, and he was developing the Global Program [on AIDS] here in Geneva. So the day he died he had sent an e-mail to me saying: "I'm coming to Geneva. I am not coming to work; my wife is coming to work. Can I see you? Can we have dinner?" I was in Malawi doing a mission, and I saw the e-mail. I said: "Oh my God, I'm going to miss Jonathan. He will be in Geneva." And when I heard in Malawi that day that the plane had crashed and Jonathan had died with his wife, it was devastating. ...

Editor's note: Mann and his wife, AIDS vaccine researcher Mary Lou Clements-Mann, were on a Geneva-bound Swissair plane that crashed off the coast of Canada in September 1998.

When he died, it was like all the efforts that we had been putting together to fight prejudice, to fight stigma, had died with him. It was such a devastating experience, the manner in which he died with all the hope that he exuded and he represented. I can't even talk about Jonathan today without really diving into a very deep emotional pit.

When he was alive and working for WHO, what was his central message, and what was his main achievement?

I think Jonathan's central message was hope beyond the HIV diagnosis. At that time during his reign, I think the feeling was that this is a disease that will never find a cure. And I think that's where we are still. We don't still have a cure. But he was also very emphatic, saying that it's a disease that we can manage as long as we can reconcile our different prejudiced positions: prejudice against same-sex relations; prejudice against injecting drug use; prejudice against black and white.

So his central message was about fighting prejudice as a core element of fighting AIDS, and also rallying different people around the disease. I think he didn't succeed. ... That was partly part of his fight with [then Director-General of WHO Hiroshi] Nakajima [that led to his resignation as director of the Global Program on AIDS]. He didn't succeed in breaking the vision of the medical solution to the HIV pandemic. There was a very fixed feeling that the solution to HIV is biomedical. He really fought hard to break through the biomedical model, to bring the social anthropological model, to bring the issues of poverty and issues of nutrition around the table.

What was he warning of in those earlier days?

In the earlier days, I think Jonathan warned about a growing pandemic, which has turned out to be true, a big pandemic which would grow. ...

Did Mann foresee what was going to happen in Africa?

He predicted it. Jonathan Mann predicted what was going to happen in Africa, because again, he always highlighted the ingredients, the fuel that was propagating the spread of HIV in Africa, and that is poverty, the position of women ... with regard to access to education and access to resources and also an [in]ability to negotiate in sexual relations. He always talked about those issues, and it has really turned out to be correct, sadly.

A lot of people said when he was killed, it made them stop and think about lost time, lost opportunities. How much might have been prevented if he hadn't been forced to resign and if he had been able to continue in this post? Did you have thoughts like that when he was killed?

I did in a way, but my thoughts were really personal. It was to me a personal tragedy, because he was my personal mentor. But in my own view, part of the legacy of Jonathan Mann was picked up by Peter Piot. This was possible, because by the time Peter Piot started UNAIDS [Joint United Nations Programme on HIV/AIDS], the U.N. and the global community had decided that the AIDS movement had to be taken out of WHO, and that had been partly Jonathan Mann's message. ...

Twenty-five years ago, the face of AIDS was white, American, gay men. Today it's overwhelmingly women of color, probably married, probably in a developing country. Why has the disease become feminized? Why is empowerment of women a way of fighting a disease?

A lot of things have hit us about this pandemic, but one of the ones that has hit hardest is the impact it's having on young women, and predominantly young, poor women, and even more women who are in the so-called steady sexual relationships, which goes back to the question of empowering women. We've been talking about empowering women for decades, especially in the context of the feminist movement.

But I think AIDS is now teaching us to recognize that as long as women are not educated, [they are vulnerable]. Keeping a young girl in school as long as possible is a protective factor, because we know that she can then make better choices with regard to sex and whether to have or not have sex.

Speaking of Africa especially, [there are issues] around inheritances and laws of inheritance. There are many tribes in Africa where, when a woman's husband dies, they are required to be married by the husband's brother, which is called widow inheritance. In these discussions, the women have no say, because primarily they are a commodity. They are sold in marriage when dowry is paid, and once dowry is paid, you have no choice about your body, about who you get married to.

We are recognizing that increasing numbers of women have been infected by being inherited. Another problem is that women are not supported to have mechanisms with which they can protect themselves, because at the moment, the gadget that exists on the market is a male condom. There is a female condom, but the female condom is largely out of reach of most women. It's more expensive than the male condom, but even more importantly, it is not a gadget that a woman can use without negotiation and express agreement by her partner. ...

[Why not?]

I think one of the challenges we have faced with HIV and AIDS is the question of what communication and what negotiation happens within a married relationship. When you talk about introducing a condom in a relationship, married or not married, then the question of negotiation comes, too. When in a situation where traditionally women have no power for negotiating for anything, then even if a man, for example, wouldn't use the condom, the woman is not able to negotiate that they do, and they are not even able to say, "I will not have sex with you if you don't wear a condom."

That's one element. The other element is in a relationship, there comes a time when people decide they trust each other, so once the introduction of trust comes into a relationship, then if there should be a digression on the part of one of the partners, it is almost impossible to negotiate condom use within that situation without breaking the trust.

In many of these instances, women feel they are the most vulnerable because often they have less income, less education, and often they have very young children. In many cases, should they be thrown out of this relationship, they would be on the street with children. So for the sake of keeping their children together and for the sake of keeping peace, many women just accept the situation, even when they have ample evidence that their spouse may be going out of the relationship. So even the male condom does not help women. ...

I believe Uganda may have the highest number of orphans in the world. How do you come to terms with the children? How do they live, and who looks after them?

Uganda, I think, was one of the very first countries to recognize the plight of orphaned children. Don't forget that before HIV we had civil wars, so there was already a big number of orphans as a result of the war. Then there comes AIDS. AIDS is very special, because although the war orphaned the children, in many cases the child remained with one parent, because Daddy would go to the war and die there, but at least the mother would be there. Many orphaned children in Uganda speak about it in poems and songs. They say, "This disease came and took first Mommy and then Daddy, and then took my little sister and then my big sister, who had been married in the next village." So it's a disease that disseminates orphans not only because it takes Mom and Dad, but it also takes adult relatives, takes aunt and uncle. So the child begins to be totally lost and is left with elderly grandparents.

I often refer to the fact that in Africa, AIDS has produced two sets of orphans, the young children and the elderly parents, because for the elderly parents, there's no social welfare system other than their children. When you have children, when they grow they take care of you, but before they are able to do that, they die and leave you with their babies. So you are orphaned, and the babies are orphaned. Those dynamics are ingredients for a very bad situation.

But what has happened in Uganda is society has really stretched itself to the extent that many orphaned children are still living within the extended family. Of course the family is getting extended and more extended. I for one have 26 children in my home in Uganda, and all of those have been orphaned by AIDS, because I come from a large family. My father had 28 children, and my mother had 12, and out of the 12 we have lost four couples. If I lost a sister, I lost a brother-in-law; if I lost a brother, I lost a sister-in-law. If you go to my mother's compound, it's like a nursery school. ...


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posted may 30, 2006

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