“AIDS came to my house on the afternoon of the 6th June 1986 …”
Thus begins a book first published in 1990 and reprinted in 2002, about the personal and professional experience of Noerine Kaleeba of Uganda, who got involved in working with people with HIV and AIDS and founded an NGO—TASO (The AIDS Service Organisation), which supports people living with HIV and AIDS—after her husband died of AIDS. Below are excerpts from the book.
Love carefully
As we began at TASO, AIDS was becoming recognised as a danger throughout the world. People were beginning to react, to begin initiatives to respond to the virus. A lot of these initiatives were geared to prevention. This was a good thing because, in the absence of a cure, prevention is the better way to fight this illness.
The public health messages that were being used then had a serious shortcoming. They all said, “Don't catch AIDS, if you do you'll die” or “Beware. Don't catch AIDS. AIDS kills.” One popular slogan used in AIDS control in Uganda was “Love Carefully”, or the church slogan “Love Faithfully”. The campaign based on this slogan contributed to the stigma associated with AIDS by relating it to low morals and death. The very phrase “Love Carefully” implies that the person with HIV has loved carelessly, even if it is not said directly. It implies that people living with HIV have somehow deliberately gone out of their way to get infected, rather than avoid it.
These slogans were coming at people in Uganda left, right and centre, as part of a massive campaign begun in 1986. The messages were all the same. There was nothing for the person who was already positive and diagnosed with HIV infection. As a result of these early messages many people living with HIV and AIDS reacted adversely. We at TASO had to really struggle to keep going, not only with the physical illness in our family but also with the mental torture and torment of these people.
It has been argued that it was necessary to use messages that would shock people into realising the seriousness of the AIDS problem. But the “Love Carefully” campaign stigmatised people with HIV… Uganda was introduced to slogans with different messages a year later from a church hospital programme in Zambia, Chikankata Hospital. These were slogans like “You can't catch HIV through casual contact” and “Be compassionate to a person who has AIDS” and “Be friends”, that kind of thing. These slogans came too late; the original ones had already taken root…
Loving faithfully: where does it start?
With the spread of Christianity, and the education of women, some women now have more say in the house. They are not as accepting as they had to be in the past. In this changed situation, one of the first things the woman says is: “If I ever catch you with another woman, I'll kill you”. The man really loves his wife, and he doesn't want to offend her. He knows that she is serious, and that she will kill him. At the same time, polygamy (traditional in Uganda) hasn't left him, it's only suppressed by the circumstances and will remain so for as long as they are happy. Let me describe one possible scenario in this kind of relationship. Something happens at home, the husband and wife have a quarrel in the night and he wakes up and goes to the office in a bad mood. There, he finds someone of lower status in the office who is nice and kind and looking for a man. He sees this seemingly happier person. A relationship begins to develop, but one of the first things he says to the girl is: “Look, I have a wife, and I don't want her to know about this relationship”, and she accepts it.
Inevitably the girl is of lower social class, and values this access to the boss, so the relationship builds. He doesn't go to her often, he goes when there is a quarrel in the house. Soon the girl feels very elevated. She has the boss, this highly educated person, and she might decide to have a child. The child remains in the background, the girl knows he has a wife, and agrees to remain in the secondary role, not make any noise, but she's not really happy, she wants a man of her own.
So another relationship starts for her. She meets a man who sympathises with her because her boss treats her badly and only visits her when he feels like it. The new man says he would be available whenever she wants him. So he comes into the relationship, understanding that her boss visits her every Saturday. Every Saturday he makes himself scarce. She is a kept woman, and kept by more than one man. Then, perhaps, the new man has a contact somewhere, and so it goes on. This happens in the majority of marriages that I know. I know many “big men” in this situation, with not one but two or three other women.
This man we are talking about is a busy man. Not only does he have a family and children to take care of, but he has a job, which sometimes takes him to Vienna or the US, or wherever. I was talking to a man in this kind of situation, with four women (his wife and three others). He was scared about AIDS. What could he do now? All these women have his children. He said to me: “But my situation is not so bad because I don't go to these women often”. He was willing me to endorse his feeling that he was not at high risk because he didn't visit them often, only once a month. Most of the time he spent with his wife. But these were his children. He had a real dilemma. Wasn't it too late? So he said, “When you say ‘love faithfully’ where do I start?”
If we tell men who already have a number of stable partners to love faithfully, what will happen to the other women? What are we giving the others who are not the ones to be loved faithfully? What are we putting in place of the man they have been depending on? We tell him, stick to one partner, but which partner? The one he married in church? What are the criteria? Why should he choose this one? What are the factors that took him away from the first wife in the first place? We don't know. If we are saying stick to this one, are we saying that the attraction for the others is completely severed, and that he won't be attracted to another person?
To make the situation more complicated, traditional practice has anyway become very confused because of Christianity, affluence, education, and so on. Wives used to respect each other and actually formed a very tight group. Today a woman, because of affluence, Christianity or education, tells her husband when she marries that she will not allow another woman in his life. When he finds one, the lies begin. This is the kind of situation that is bringing problems. Women say they are happy to remain behind doors, but they aren't and so they look for somebody else who will not keep them behind doors, who will promise to be their own, and the chain continues…
Talking about sex
“AIDS has brought two major taboos–death and sex–to the dining table.”
Most women find it difficult to begin a discussion about AIDS in the home even now, but back then it was just about impossible. One option that we in TASO gave women was to bring up the subject at an opportune moment, for example as they sat around the table after eating, not in the context of sex. At a first interview we provided people with pamphlets to take home with them. Using these pamphlets, people could introduce the subject casually—“You know what, I was in the clinics, and there's all this information about AIDS” and then begin to talk about it. From this discussion condoms could be introduced. “It's said that condoms can also protect against HIV infection.”
Quite a few things not usually discussed could be raised, depending on how they were brought up. I remember going back to the School of Physiotherapy to talk about HIV. I asked the women how many of them had ever discussed HIV with their husbands. Almost none had done so, and those who had tried to discuss it had done so in a negative way. They accused: “You, John, you really are moving around too much. You are going to bring AIDS into this house.” When you bring the subject up in that way you know it will lead to a quarrel. I suggested that they use the TASO pamphlet and introduce the subject as if they were just sharing their day's experiences. Depending on how the husband responded, they could then ask: “Have you ever used a condom? The impression I got at the clinic was that these people were really serious about their campaign. They actually gave me condoms. Why don't we try them? Let's try them tonight and see what happens?” Bring it up as a joke, depending on the mood of their partner. For some women, even though they are married, there's no joking about sex. If there's going to be sex, you will just jump into bed. In a situation like that you can't just raise the subject.
There are exceptional families where safer sex can be discussed and remain between the two of them, but generally, if the man has not agreed to use condoms, they can't discuss the matter further. In my situation I could have introduced a condom. We didn't use condoms very often because Chris didn't like them at all. But I think if I had insisted he would have used them. We women know what tricks work with our partners. We know where their soft spots are… but we don't use this to our advantage because we resent being the one to have to please him all the time. But with HIV we have to, especially when we live in cultures where men control sex.
Particular groups of women may have a particularly difficult task introducing condoms. Second and third wives, for instance, must try very hard to please their man when he only comes to them once a month. How can you present a condom in this situation, when he's visiting once a month? You can't. If the woman believes that this situation is right, she will not change no matter how long you talk with her. She will not speak up to a man, belittle him. She may believe that he should make the decisions.
In fact, some women with HIV say that they have nothing to worry about because they got the virus from their husbands. Everybody in the village knows she is a faithful wife, she is happy and content that she got it from her husband. The fact that you have a fatal illness doesn't come into it. People tell me I am lucky, because even if I fell sick everybody would know where I got it from. The whole world knows that I got it from my husband. That's the judgmental part of it.
In my culture, once a woman is married to a man, she has to have sex with him when he wants it. The only way a woman can remain married in the same house is if she has sex when he wants, the way he wants it. She can't negotiate for safer sex. She can't say that she feels frightened, or that she feels unsure about him, or ask him to use a condom. The moment she asks that, he turns on her, thinking that she has been up to something. [But] some things will be more acceptable if they are discussed differently. We need to educate and sensitise people first
AIDS counselling, Mozambique
These were issues I discussed with women who came to TASO asking for an HIV test and which, 15 years later, I still discuss when I am in my counselling role. When I asked them why they wanted a test, they said they suspected their husband was seeing other women. They said that if they were negative, they would leave him. How sure is she? Even if she ignores her own sexual needs, what about her financial situation? How many children does she have? What would happen to them if she left her husband? Would he keep the children, take responsibility for them? Sometimes he would turn out both the wife and children. I asked them what they were planning to do? They often said they would look for another man who would be faithful to them.
In an environment like Uganda, you have to ask whether she has actually seen such a man. Generally, such women haven't. They are fantasising. They needed to think about the fact that they wouldn't know whether any other man they became involved with was infected or not, even if he seems to be faithful to them. Even when they see their neighbour walking hand in hand with his wife, they are just hoping that he doesn't go around with other women. Counsellors are trained not to give advice, rather to guide a client to work through the different facets of their problem. In this counselling situation, a counsellor will send the woman away to think further about the decision. If there is no other reason for the woman to have a blood test, then she should think about whether she really wants to be tested. Many such women will decide, after thinking about it hard, that they don't really want it.
In our culture, there seems to be an assumption that women only have sex for babies or to please men. For example it seems to be taken for granted that once women reach menopause, and can no longer have babies, they don't need sex. I don't think women only have sex for babies or to please men. Sex is a natural human desire, and has nothing to do with babies. For me the desire for sex is really associated with circumstances. When Chris was in England I knew that he would come back. If I wanted to have sex I would close my eyes and think of the day when he would come back, and how it would be. After he fell sick and I knew I wasn't going to have sex, I thought less about it. Then, for a long time following his death, any feelings of desire that came to me (and they did, inevitably for a healthy woman in her 30s) weren't acted on because in my mind I associated sex with HIV. That has slowly changed, but it is still a bit of a wall in my personal life…
Teenage sexuality
Before I met Chris, when I was about 20 years old and at the School of Physiotherapy, I had an affair with a man in his 40s who was a friend of my older brother and my father. Right from the outset he told me he would marry me and would therefore protect me from pregnancy until I finished at the School. I soon realised that my brother and father approved of this arrangement. Although I knew that he was already married, and in fact had two wives, the prospect did not alarm me. Being taken as a third wife, however, was not what I wanted out of life. So while I enjoyed his attentions and gifts, I was always looking for a younger man whom I could love and marry in church.
Even so I was infatuated by this man. If he hadn't been married I would have married him. I had just started my first year at the School of Physiotherapy and I was very flattered by his attentions. He would take his wife home at 5 o'clock, and then come back for me in his Benz. We would go out to eat, and he would buy me clothes and expensive presents. My only regret was that I couldn't show him off to my friends.
At boarding school, at about 18, the nuns taught us that sex led to pregnancy, and that there were several different methods of contraception that could be used, including condoms. So when my friend suggested sex to me, I told him I was afraid of getting pregnant. He told me he would look after me, he would protect me because he was interested in my affairs and wanted me to finish at the School. I knew he wouldn't let me get pregnant because of his friendship with my brother and father. He had gone home to tell my father that he wanted to marry me. My father agreed but said that I needed to finish my education first, because I was bright and needed a profession.
Although people say that men in Africa are not familiar with condoms, men of the world like my friend used condoms at that time, especially if they had families and were afraid of taking home an STI after going with prostitutes, or being troubled by young girls turning up on the doorstep with a baby. My friend also respected his wife too much to do that. He would never meet me openly, so we couldn't go dancing in case we met someone who knew them. We always went to drive-in cinemas or something like that. That's why I wanted to find my own man, my own marriage.
So many young girls fall into the trap of going out with older men who “look after them”, as I did. They end up either pregnant or with HIV, and thrown out of the home. If any one of my daughters had told me that she was having an affair like mine when she was still young, I would have found the man and killed him! I once asked my friend how he would react. He said he would kill the man who did with his daughter what he did with me! The situation is, of course, much worse with HIV. Girls can end up both pregnant and HIV-positive when they first start having sex, and it is an added tragedy to have unintended pregnancies with HIV. The main way to prevent children being born HIV-positive is first to prevent HIV in young women, but also to prevent unintended pregnancy.
My early experience is probably why I feel that we need to give our children information. It is important to talk to them about sex. I never had any talks with my mother about sex. I had a talk with my paternal aunts, who traditionally give sex education to girls, but it's not very constructive—just that if you have sex you get pregnant, that's all. I think we need to explain to our children that sex is healthy, that the feelings they have about sex are normal, natural, and can be expressed without putting yourself at risk. They have to know exactly what the risks are. The most important risk is HIV infection, but second to that is unwanted pregnancy. When I talk to young people, I try to simply give the facts about sex and contraception, what protects against pregnancy and what protects against HIV. I don't give advice, partly because of the counsellor instinct in me, but also because teenagers don't take advice easily. They listen and pick out what they need. What is important is that they receive straightforward, not distorted, information.
I had long been convinced that in order for young people to be able to protect themselves from HIV, other sexually transmitted infections and unwanted pregnancy, they need four things:
| • | access to accurate information on sexual issues | ||||
| • | skills to negotiate situations | ||||
| • | practical and realistic options to choose from | ||||
| • | support and encouragement to maintain the course of action they choose. | ||||
Teenagers get a lot of their information from each other. Sometimes you go to tell them something, or to explain something, and you find they have already discussed it between themselves and know all about it. That is another reason why they need access to accurate information to pass around, through what programmes call peer counselling or peer facilitation…
Personal victory over the virus
It is important to impress upon people that if they don't pass the HIV infection on to anyone else this will be their personal victory over the virus itself. The virus that they have in their blood cannot outlive them in any other way than to go into another person's blood. If they allow the virus to move out, they allow it to survive and prosper, even long after they die.
This is the only way the virus lives on. The virus doesn't want to kill you, because the day it kills you it also dies. This is not in its own interest. It only intends to multiply, but in doing so it kills you. It is only while you remain alive that it can spread. The day you die the virus that is in you is buried with you and is finished.
We had interesting sessions in TASO's day centres putting this kind of scenario into plays. We found that once people understood the virus in this way by using role-plays, they could see that the virus could also be defeated. At that moment they knew that they couldn't kill the virus, but they could defeat it.
For a person like me, such a victory over the virus is only a partial victory. The virus had already killed my husband. The only way I can defeat it is by not allowing it to go into anybody else.
We Miss You All. Noerine Kaleeba. AIDS in the Family
Noerine Kaleeba with Sunanda Ray
Harare: SAFAIDS, 2002. 2nd Edition
Available from:
SAfAIDS
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Harare, Zimbabwe
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