A Discussion with Rev. Canon Gideon Byamugisha, Founder, African Network of Religious Leaders Living with or Personally Affected by HIV/AIDS
With: Gideon Byamugisha
May 3, 2009
Background: In 1992, Rev. Canon Gideon Byamugisha, an Anglican priest in Uganda, became the first African religious leader to openly admit to being HIV-positive. Following his disclosure to the public, he began to speak widely to other leaders about the need to reduce stigma associated with the disease. In 2000 he founded the Africa Network of Religious Leaders Living with or Personally Affected by HIV/AIDS. In the following discussion between Rev. Byamugisha and Thomas Bohnett, he describes his ongoing work to combat stigma. He comments that such stigma plays a major role in discouraging infected individuals from seeking treatment, thus contributing to the disease's spread. Rev. Byamugisha feels that Africa suffers from a form of fatalism that blinds the population to the possibility of reducing malnutrition, death by preventable disease, and maternal and infant mortality.
You recently received the Niwano Peace Prize, honoring your work. Can you tell us about the award and what it might mean for your ministry?
The Niwano Peace Prize, awarded by the Niwano Peace Foundation, is for my work on challenging HIV/AIDS-related stigma, shame, denial, discrimination, inaction and mis-action. I think they have a passion, the Niwano Peace Foundation, for identifying and rewarding people who work in the interests of global development, global health care and global peace and whose motivation is religious. I hear—I was not there—that they got some 187 names, and they had a nomination committee, which sat, and they awarded me the prize. I am very humbled. I did not know that the things that I was doing were being noticed worldwide. I was doing my duty, my part, what I felt was the best to do in the circumstances—to see that that has attracted world attention is humbling. It is also rewarding in a sense and has energized me to do more and do better. It is an affirmation of what I've been doing. I have always told people that we cannot win against AIDS unless we focus on accelerating the elimination of stigma and shame. I am so glad that my passion has caught the ears of world leaders and a forum like the Niwano Peace Foundation.
Let's go backwards a little bit. You talked about the important role of stigma in the HIV/AIDS pandemic. Was this stigma something that you were aware of before you contracted HIV?
My knowledge of stigma before contracting HIV, and my awareness after realizing I was HIV positive, are rather different. I did have some knowledge in the beginning. I would go to class—I was a lecturer in the Anglican college here—and talk about these issues from the head, from the brain. But when it becomes experiential, when it is your turn to experience the stigma and the shame and the denial that you have been talking about, it is different.
Remember that at the time that I opened up, in 1992, HIV was regarded as a disease of sinners. People then preached that there is a disease, it has no cure, it has no vaccine. It attacks prostitutes. It attacks people with loose morals. It attacks truck drivers along highway routes who go with women and men. When they told me I was HIV positive, it was devastating. For the first time I wanted to go behind what I was hearing to analyze it and understand whether it was true. I hadn't done that analysis before.
What you hear on the television and from the pulpit is that this is a disease of truck drivers and prostitutes. I'm not a prostitute. And neither am I a truck driver. So, I reflected, and said to myself, “Wait a minute—it seems there are things that are not being said about this disease that need to be said.” You meet someone and say you are HIV positive, and they ask, "Have you repented about it?"
And you say, “Wait a minute, there is a problem here. Why are people associating HIV infection with sin all the time?” And so it made me work, it made me say, “I should open up. I should be very public with my situation as a way of teaching people that there is another face of HIV that probably they don't hear about, they don't read about, they don't talk about, or isn't talked about by the religious leaders." Here is a face where you cannot connect the infection with the sins they have either committed or not committed. It was a very risky thing to do at that time, opening up.
How did people respond to you?
People's responses were divided. Some were really very supportive, very appreciative that I had broken the silence. Others said I was bringing shame to the church. They would say, “If you are HIV positive, why do you go talking about it? Why don't you take the punishment quietly, and serve the sentence without bringing the church into it?” The moment I said that I was positive my mother church [the Anglican Church] was implicated. Some people said I was spoiling the name of the church.
So, my opening up really divided people. Some said, “Yes, let's give him all the support he needs.” People like my bishop, Rt. Rev. Bishop Samuel B. Ssekkadde, Rev. Sam [Ruteikara], and my family members. Many said, “This man, he is doing the right thing.” Others were far less supportive. A third group didn't know what to make of me.
So in any public situation, I have come to expect people who are proactive, people who barely conceal their disgust, and people who would remain on the fence, not so sure of where to go.
When did you first discover you had the disease?
It was after my wife had died, which was on April 30, 1991. We knew after she died that she was HIV positive, but not before.
I went to be tested in January 1992. It took me some time. My wife died in April, but I didn't come to know that she had died of an AIDS-related illness until October.
Who told you?
My sister-in-law Eunice told me that she found out at the time my wife was dying. Apparently on that Friday evening when we went to the clinic, between those two, they agreed that they should take an HIV test. I don't know why, maybe because Eunice has a health background; she may have suspected something was wrong. I was not there. That was a Friday, and my wife died on a Tuesday. After the burial, Eunice came to pick up the results, and they were HIV positive, but Eunice was afraid, so she didn't tell me. She continued praying to God to give her the right time, the right moment, when she could break the news. I think she was right, because in April I was preparing to sit my final exams in June at the seminary; it was my third and final year. So April was the last month of study, and May—June was exam time. She reasoned that if she broke the news then, I wouldn't concentrate. Fortunately, when I sat the exams I passed them, first class. Because of those results I was asked to remain at the college as an assistant lecturer as I waited to depart for a Ph.D. program at the University of Cardiff.
What prompted you to take your wife for medical attention?
She had told us that she had pneumonia. On Monday and Tuesday, she had chest pains. On the third day she said she had a back ache, so we took her to a clinic. The doctor said she had pneumonia and that we should treat her over the weekend and bring her for review on Tuesday. And while we were waiting for the doctor on Tuesday, she died.
When did Eunice share with you the cause of your wife's death?
In October I had begun lecturing and Eunice felt that it was time to tell me. She called me and said, “There is something I've wanted to tell you, but I didn't know how to start, but God has now given me the confidence to tell you so that you will know how you plan your life.” After she had told me the whole story I said, “What are you talking about? You mean that my wife died of an AIDS-related illness?”
How were you yourself feeling at that point?
I had no symptoms at that point. Remember, we were just preparing to leave for the University of Cardiff. We had no illnesses, neither on my part nor on her part. Neither of us had fallen seriously sick. We were preparing for a new beginning. My wife also had been given a place [at Cardiff] and we were in the process of finalizing to leave. So the change was sudden and jarring.
You must have been in shock. What were you thinking about your future?
At that point I was not sick. I was only HIV positive, but my health was still strong. So my immediate attention was on how to deal with the stigma, not with the disease. The reality of the sickness came later on, around 1997 or 1998, five years later and long after I had disclosed that I was HIV positive. At the point I disclosed in 1992, I didn't have any serious illness to deal with. The issue was, “How do I deal with this environment that is so stigmatizing? So shaming? Do I keep quiet? Do I talk? If I keep quiet, what will that mean? If I talk, what will that mean?” Those were the concerns.
It must have taken you some time to come to the decision to disclose your HIV status.
It took me 20 minutes to become public. From the testing center, I entered the matatu [shared taxi] to Mukono, where I was lecturing, and in that taxi, I had to really make up my mind, whether I was going to reach the college and keep quiet, or whether I was going to reach college and tell people. And so in that 20 minute journey, I came to the conclusion that I should disclose.
You must have had great confidence in yourself.
Many considerations were going on during my quick thinking. One is: how do you keep quiet as a leader, as a religious leader, and still maintain your credibility? That immediately weighed heavily on my conscience. Because I knew something that the world did not know about me. At that point, only two people in the world knew that I was HIV positive—me and my counselor. How do I reach college, and begin conducting my business as usual, without people knowing what is happening in my life. How, when people say, “How are you?” do I say, “I'm fine,” when I'm not fine?
How does someone in a prayer fellowship say, “Anyone with a prayer request?” and I say, “No,” and yet I have this life-threatening diagnosis? You know what they were telling us at that point if you are HIV positive? The maximum you can live is three years, five years, not more than that. I felt that I needed to be honest. First, to myself. Second, to God. And, third, to the people I lead, the people I minister with or to. My fellow lecturers should know. My students in class should know. My family should know. The people I preach to in church should know. I made that decision. Of course I didn't stand on television and say, “Hey, I'm HIV positive.” No. I made a conscious decision to speak to an ever-widening circle, starting with my immediate employers, then my staff members, then my students, then my family, then my wider church, until 1995, when I was fully public. 1995 is usually quoted as the day I became public, because there was an international conference here [in Kampala], and people took my testimony and printed it in French, Spanish, and English.
For reasons not associated with HIV, I had to move from the college to do my master's [degree] in education specializing in curriculum development. Because the University of Cardiff arrangement did not go through, I said, “Okay, I can go to Makerere [University] and do my master's.” In the middle of that master's [degree] program, the Church of Uganda advertised in the newspaper that they wanted AIDS education trainers. And I said, “This is my job. This is something that is within the church. It is the Anglican Church of Uganda advertising for HIV and AIDS education trainers. I am a professional educationist and I have HIV.” I went to my professor, the late Professor Odaet, and said, “I feel convicted to go and do the interviews.” And he encouraged me and said, “If that is where your passion is, go, obey your conscience. This master's program, you can pick it up again any time and finish. But now you go and serve.” So I went and did the interviews. We were 12 people, and they selected four of us.
That was at the end of 1992. We worked with the Church Human Services AIDS Prevention Program [CHUSAP] through 1994. At the end of 1994, the project wasn't renewed. In 1995, I spent about eight months without a job, after the project had closed. I debated, “Should I go to the village where I was ordained? Or should I remain around, trying to see what to do?”
One of my former lecturers connected me to the Diocese of Namirembe, and I met Bishop Samuel. That was in late 1995. I tried very much to impress him with my education credentials. He said, “I can give you a teaching job in our theological training seminary. Come tomorrow and pick up your appointment letter.” As I was leaving his room, I thought, “You are meeting this gentleman for the first time. You've told him everything about yourself except your HIV positive status.” So I had the conviction that I had to go back and share with him that I was HIV positive. I wouldn't want him to hear it from others. I knocked on his door and he said, “Young man, I told you to come back tomorrow.” And I said, “Excuse me, bishop. There is something I want to share with you.” And I shared my story, and he felt touched. He said, “I have never seen this honesty. Most HIV positive people in my diocese do not feel so free to tell me their HIV problem. I often see that many need help, but I can't force myself on them to tell them they have a problem. Now you are telling me and are trusting me with your confidential information. Let me tell you something: you are going to be my own son.” And that was very special. We have kept our relationship up to now.
This chapel [Bishop Samuel Chapel] is named after him. He said, “Don't go to Namugongo to teach. Since you've told me who you are, come to my diocesan office, and head the AIDS program there. Help us to perfect our AIDS response using your own experience.” CHUSAP was a provincial program, but this program that the bishop asked me to join was a diocesan program, which probably was better. In CHUSAP we were doing trainings, but we didn't have much time to follow them up. In the diocese, I could go and inspire these churches, and we started something that lasted. We really did a lot of programs. We did the Youth Alive program. We did testing initiatives. We did post-HIV test clubs. We formed home-care groups. It was beautiful. It was really beautiful.
How was your health at that time?
[The year] 1995 was okay, 1996 was okay, and 1997 was okay. 1998 was not. My CD-4 count fell. I was attacked left and right with opportunistic infections. It was terrible. I lost weight, nearly 20 kilograms. My bishop was told that I had only six months to live. That's when he acted, wrote a letter to the minister of health, asking what they could do to keep me alive. At that time Uganda didn't have an AIDS treatment program. The UN had just begun a pilot program, which was called the United Nations Expanded Treatment Access Initiative. Three countries—Uganda, Cote D'Ivoire, and Vietnam—had been chosen as pilots. That was all. Mildmay [Centre, an early AIDS treatment center in Kampala] was just starting, so there was really not much: no access policies on treatment, no strategic plans for accelerated [anti-retroviral] treatment. The ARVs were there, but on the private market for something like $1,500 a month. By the time I started taking ARVs they were $950 a month.
How did you come up with the money?
I didn't get the money. When my bishop wrote a letter to the minister of health, the minister shared it with Dr. Elizabeth Madraa, who was in charge of the Uganda AIDS control program/Ministry of Health. Dr. Madraa shared it with an American citizen, who was married to someone here, William Pike.
Yes, Cathy Watson. She shared it with her friends in California, and they began sending medicine. That lady was amazing.
You see that hall? It's called the Lims and Lisa Carver Hall. It's named after the lady who sent me the medicines and another Good Samaritan from Singapore who augmented the supplies through additional financial contributions. It's a wonderful story. When Lisa Carver got the letter telling her of my status, she would go to American homes where she knew there were people on treatment and would ask, “Are there medicines you are no longer taking because you have gone on a better regimen?” She would then collect them and package them according to what they were—Combivir, Crixivan, Stocrin, or whatever. And then, she would ask and say, “Which medicine should Rev. Gideon start with?” I was not a canon then, I was just Rev. Gideon. Then the doctors gave her the medicine prescriptions. I started with Combivir and Crixivan. And she began sending the medicine. She was in San Francisco.
Things went on very well, during 1998, 1999, and through 2000. And then in 2001, the supply was disrupted by the September 11 events. The postal system was not allowed to deliver. Because of the anthrax scare, they didn't want to ship things. So Mr. Lim Chey Cheng, a Singaporean who had seen my picture in a book about Uganda's response to HIV, The Open Secret, also agreed to help and said, “Okay, I will send medicine.” Another lady, Mrs. Jo Harris, the wife of the former bishop of Oxford, Lord Richard Harris, organized a group in Oxford. Together with the Lims family in Singapore, they generated enough money to buy and send medicines through an arrangement with Mildmay Centre.
How is your health now?
Very steady. You wouldn't compare my strength now with the strength I had then. I feel great. I do a lot of things that I couldn't do in 1998. In 1998 I started treatment, and by 2000 my CD- 4 count had come back and the viral load reduced considerably. By 2002 my viral load had become undetectable, as it is now. Last month I took a CD-4 count, and it was 736.
Is that a normal reading?
Way above normal. The average is 400. So, you can say I'm really doing well, very well, on ARV medicine. My immune system is also strong. Before I took ARVs, every three months I would be admitted to the hospital. I would be attacked by any opportunistic infection you can think about. Around 2000, I was invited to speak at the UN, but I fell sick and couldn't give my address. But now, I can travel 17 hours of flight, speak, and come back very strong. Sometimes I hear people of faith say they don't see miracles. But maybe they don't have the eyes to see the miracles, because ARVs are real miracles in HIV and AIDS treatment.
Can you talk about stigma and its importance to your message?
Stigma has been central to my ministry. You see, where AIDS care and treatment are concerned—I'm not a doctor. For scientific research for prevention—I'm not a scientist. Where my ministry lies is to work for the defeat of HIV and AIDS related stigma, shame, denial, discrimination, inaction, and mis-action. Millions of people who are HIV positive are not understood. We are not valued and not appreciated. We are dismissed as moral deficits. And that doesn't stop with us people with HIV. It goes on and the stigma attaches itself on our families, on our communities, and then it attaches itself to our nations and continents. Stigma is a spiral.
I was attending a workshop in Washington, D.C., and the organizers put us into discussion groups. We were discussing, “Why is there a lot of TB, malaria, and AIDS in Africa?” One group said, “One reason is because Africans don't know how to pray.” I was in another conference where some people said, “These Africans, they don't behave themselves; they are screwing themselves to death.” The stigma is not only with the person living with HIV. There was a time when you would say I am from Uganda, and some countries would hesitate to give a travel visa into their country. The result of all this stigma is that 70 to 90 percent of all people who are HIV positive still do not know they are HIV positive. Many of those who know their HIV status as positive still fear to disclose. And many of those who dare to disclose do it too late for both HIV and AIDS prevention and management.
What has been your personal experience with stigma?
The instances I've experienced have been mild. You know, it's very hard to stigmatize someone who is very open. Before you stigmatize me, I have already pushed it to you. I didn't give room to people to stigmatize me in that very bad way. You get the point? It is people who hesitate to disclose that are thrown out of their parishes. For me, I didn't give people a chance to do that. When I met my bishop for the first time I said, “I'm positive.” You decide what you want to do with me there and then. Of course, as I have said, there are situations that are stigmatizing. I hear stories that I've gotten from my fellow priests or people from the families and communities that are horrendous, but for myself, I cannot point to many instances. There, I disappoint the journalists!
I've never been thrown out of church. I continued lecturing. I served in the bishop's office for six years. I became a canon in the Cathedral and was nominated by his the president of Uganda to serve as a commissioner in the Uganda AIDS Commission from 2001 to 2005. There are instances, though, where the general pattern of stigmatism did affect me. One case was the withdrawal of my acceptance to do a Ph.D. in Cardiff. You could say that that was stigma or discrimination. Perhaps people thought, “Why waste money on someone who is not going to finish his Ph.D.?”
Sometimes I will be asked, “You have told us you are HIV positive. Have you ever repented about it?” That's a stigma, connect my infection with immorality. People ask me, “How did you get it?” These are stigmatizing instances.
I hear stories of people who say, “We have been thrown out of houses. We have been thrown out of the marital bed. We are chased out of our jobs.” In light of these instances, I consider my own instances of being stigmatized and rejected very minor. To me, if people are looking for a person who has been stigmatized, harassed, rejected, and discriminated against they can not find that in my story. But if they are looking for stories of people who have been loved, cared for, and supported by their family, their church, their fellow clergy, and their friends worldwide, then that is my story.
In a sense, part of your message must be about the importance being open.
Yes, you see, there are two types of stigma. There is self-stigma, and then there is societal stigma, and they reinforce each other. If you can cut down on self-stigma, you are indirectly tackling societal stigma. If you fuel self-stigma, then you fuel societal stigma. If you stand up in church and you say, “Brothers and sisters, I want to tell you that I'm positive,” you are really causing a metamorphosis in thinking. You are forcing the church members to move from what they think to what they should do. It is different from Christians who might spread rumors like, “Our priest is positive. Do you know our priest is HIV positive? He should not baptize our children.” That is different from my case. You are there in church, you are open about your HIV positive status, and you say, “Come for holy communion.” You are forcing them to say, “Okay, either I go and take this holy communion, or I don't.” That is quite different from the atmosphere that is created when someone hesitates to speak out; then people may well go to your archdeacon, and say, “Transfer this priest because we cannot take holy communion from him, because we know he's positive, and he's not even talking about it.” That's a different situation. Breaking self-stigma is a way of tackling societal stigma and breaking societal stigma facilitates the crumbling and defeat of self-stigma. People who are public about their HIV positive status help people to see HIV and AIDS with lenses they have not used before. Now I have helped the religious community worldwide to understand that there are two words we are confusing when we are fighting AIDS. We are confusing the word “right” with the word “safe.”
Most Christian ethics is not about what is safe and unsafe. Most of it is about what is right and wrong. The mentality and moral reasoning of the Christian world has been found wanting when it comes to HIV/AIDS. It is not ready to deal accurately with AIDS because it brings moral attributes of what is wrong and what is right in sex and sexuality and plants them on AIDS. They are imposed on the HIV and AIDS prevention conversation, and people conclude that when you do the morally right things in sex (saying no to fornication, adultery, and prostitution) then you are safe from HIV, without considering other variables like unsafe environments. Not all sexual saints are free from HIV and not all sexual sinners are HIV positive! There should be an ethic that tells people to do what is right and safe in both sexual and non-sexual matters at the individual, family, local community, national, regional, and global levels.
But in Christianity there is a misnomer, a false way of thinking that suggests that what is right in moral categories is automatically safe in sexual, reproductive and public health terms, and that what is wrong in Christian morals is automatically or inherently unsafe. So, when people say, “You are positive?” then their next question is, “Oh, what wrong thing did you do? Did you commit adultery? Were you unfaithful, promiscuous or a prostitute?” That is the ethic that they are used to. It is like saying, “You have typhoid—whose water did you steal?” or “You have mosquito bites allover your body and malaria parasites—whose bed did you sleep in without their permission?” or “You had a car accident—whose car did you steal?”
That must be difficult for many in the religious world.
Very, very difficult. Now you meet a young girl and say, “You are not married yet.” And she says, “Yeah, I'm still looking for the right person.” Maybe what she should say is, “I am still looking for the right and safe partner!” Because the right person may be right in terms of good character, good behavior, and good morals, but in terms of HIV infection, they may be HIV positive already and therefore unsafe in the absence of HIV testing and safer sex practices.
Indeed, not all sexual sinners are HIV positive and not all sexual saints are HIV negative. That ethical conversation has to come to the table and people should really face it. What we have now as the underlying HIV prevention message is, “You pay for your sins. If you do the wrong things, if you are unfaithful, if you are doing unacceptable things, you will pick up AIDS.” What does that mean? It means that people who feel they are good, right and faithful will not think about AIDS risk and vulnerability as their problem. They will have a false security in a world where millions of good, well behaved, and faithful people are already HIV positive, and yet their HIV status does not automatically show either on their faces or in the good, right, and faithful things they do! And there is nothing worse than that: to think you are secure when you are not.
As you can see now in Uganda, the highest percentage of new infections is among married people. Of course, the people who are using the old categories of morality to talk about AIDS are saying, “The high percentage among married people is happening because of unfaithfulness among men,” because they can't easily think of something else to say. But those of us who have distinguished between what is right from what is safe know that 65 percent of those infections are among married HIV positive people sero-converting in faithful sexual unions. Sero-conversion occurs when one partner is positive and the other is negative and they marry and have repeated and unprotected sexual intercourse without knowledge of their status, and then the HIV positive spouse sero-converts the HIV negative one.
Because people still inaccurately connect AIDS with immorality, they say, “Oh, those high statistics are happening because unfaithfulness is happening in marriage.” True, that's part of the answer. But only 35 percent of new infections are happening in marriage because of unfaithfulness. The remaining 65 percent is happening through discordant sero-conversion.
These false assumptions make our AIDS fight very difficult. Because you hear people say, “Abstain. If you can't abstain, be faithful. If you can't be faithful, use condoms.” What do you hear in that statement? First of all, the whole conversation is focused on sex. Abstinence—sex. Faithfulness—sex. Condoms—sex. Where is the discussion of non-sexual routes of transmission like infected mother-to-child, unsafe injections, unsafe circumcision or other unsafe skin cutting, skin piercing and skin-penetrating behaviors and practices? Where are people getting HIV prevention messages to help protect themselves from HIV that is not sexually transmitted? They don't get it. What they hear on radio is ABC. They go to church: ABC. They go to political rallies: ABC. Any wonder then that HIV-related infections, illnesses and deaths are highly stigmatized?
Isn't it true that most transmission is through sexual means?
It is, but what are you telling a person who was born with HIV? You said most, not all. The 20 to 24 percent annual HIV transmission percentages that Uganda is currently experiencing through infected mother-to-child transmission are not small percentages. That is the problem with moral absolutes. The word “most” conceals what is very dangerous. Even two people getting infected is not good. Besides, if two people out of every 100 are getting infected because of unsafe blood, injections or unsafe circumcision, and you have two to four million people who are HIV positive in a given community or country, how many are those? It would only make sense if we are only 100 people who are HIV positive and it's only two of us who have become HIV positive through non-sexual means of HIV transmission. But if they're saying that two percent of all HIV infections are non-sexually transmitted, it is two percent of millions, which is an enormous number. Besides, one can be infected asexually and eventually pass on the HIV infection sexually. So in the end, a non-sexually acquired infection that was initially regarded as insignificant by policymakers becomes a sexually significant HIV transmission.
The argument that we must concentrate on sex is widespread, but ultimately not comprehensive enough. And I wish people were talking about unsafe sex (whether lawful or not) and not just unlawful sex. If we concentrate only on unlawful sex, we stigmatize people, and they don't test, and many of those who will test will not disclose, and those who will dare to disclose will do it too late for effective HIV and AIDS prevention, care, treatment and management. So the benefit of the message in HIV prevention continues to be lost.
What you're saying is that talking about ABC can contribute to stigma because it conceives of transmission only through sexual modes?
Yes, and that is the argument I've had with my godfathers in the HIV and AIDS ministry. There is a difference between criticizing and critiquing. I don't criticize, I critique. I critique and say, “Look, if we have scored 40 percent in the AIDS fight using ABC, we could score 80 percent if we expand on that message to make it more comprehensive, more accurate and less stigmatizing.” Because surely, having 70 to 90 percent of the people who are positive either not knowing or hiding their HIV status, for fear of being harassed, rejected, mis-understood or of being discriminated against in their places and communities of work, residence, healthcare, travel, or study, is not a good sign. Why is it that we have put so much effort into educating people, we've brought testing services nearer, but still only between 10 and 30 percent of people know their status and even fewer of those who know freely disclose their HIV status to their sexual partners? We do have a good idea why; it's about stigma. Many can't tell their husbands, many can't tell their wives. They marry and get married they have children without either knowing or communicating that they know they are positive. When they dare to disclose, they do it too late for prevention for they've already infected their spouses and their children. It is also too late for effective AIDS treatment and management, for TB and pneumonia have already eaten up three-quarters of their lungs and cryptococci meningitis is too advanced!
For me, science has done its part. It has told us how HIV is transmitted and how it can be prevented. It has told us how you can manage your infection so you can live a long life that is also productive and safe to those who are still HIV negative. It has also told us how you can block HIV transmission between two positive people who are trying to make a baby. For me, God has done his part through science. What remains is our challenge: to defeat HIV-related stigma, shame, denial, discrimination, inaction, and mis-action and to translate that science into good practice and AIDS competence.
You have augmented ABC with SAVE [Safer practices, Access to treatment and nutrition, Voluntary, routine and stigma-free counseling and testing and the Empowerment of children, youths, women, men, families, communities and nations living with or vulnerable to HIV and AIDS]. How did you come to incorporate that into your message?
SAVE came as a realization of what I've already said. That we had a message, ABC, that had three problems. One, it was inadequate. It was only talking about one mode of transmission. Even though that mode was and is important, it was and is not everything about HIV infection and transmission. And as I've said, having a prevalence rate of 24 percent coming through mother-to-child infections and transmissions is not small. Neither is the 2 percent coming through contaminated blood related infections, especially when we remember that the 2 percent will eventually and most probably pass on their HIV infections to others through unsafe and unprotected sex in marriage and outside of marriage. What was originally non-sexual becomes sexual in the long run. So ABC is inadequate in that sense. Thus, concentrating on one mode of transmission when we know there are more modes beyond sex is inadequate, inaccurate and stigmatizing.
Secondly, ABC does not talk about the role of treatment in prevention. We don't hear the treatment message in ABC. And yet we know that if you have an effective treatment program, you indirectly have an effective prevention program. If all people who have HIV can be put on ARVs and their HIV infection is treated and managed so that their viral loads are undetectable, then their chances of infecting others become negligible. But also, if treatment is made available, accessible, and affordable, then many HIV-positive people who are HIV sero-status blind will be induced to overcome self and societal stigma and test for HIV, and then make better make informed and safe decisions like I did and do still. So that inadequacy helped me to say, “How can I contribute to the global HIV prevention campaign a way that adds, not subtracts, value?” The SAVE message and approach advocate not throwing away ABC. Rather, they are expanding on it.
The third bit is that when we are writing ABC, the characters are on the horizontal line in terms of importance and relevancy to HIV prevention. But when most AIDS prevention educators and campaigners are talking about it, they align the message vertically in terms of importance. It is A first, B second, C third. If you fail A, do B. If you fail B, do C. What do people interpret that hierarchy to mean? They interpret it to mean that faithful people do not need condoms. “If you are abstaining, that's fine. If you can't abstain, be faithful. But if you can't be faithful, use condoms….” So the teaching goes. So the people, families, communities, and nations at risk of and vulnerable to HIV understand the communication to mean “Only use condoms when you're going to be unfaithful.” Which is not correct: there are many faithful people who need condoms, but not because they are unfaithful but because on top of doing the right thing, they want to do the safe thing. The teaching as we have it now erroneously tends to imply that you only boil water when you have stolen it. Or that you only sleep under a mosquito net only if you are trespassing in someone's marital bed. You only wear a car safety seat belt when you have stolen the car! And so on.
You find flaws in the basic hierarchy of ABC.
It's the way people talk about the different elements, and make people who are using condoms feel stigmatized. And then, it makes people who are faithful feel as if they are not at risk, because they have been told, “You are faithful, you don't need to worry about HIV.” Yet we know that we can be abstinent and be faithful and still be HIV positive.
And finally, it is stigmatizing because of what I've already shared. There are so many people who have abstained and they are positive. There are people who are faithful, and they are positive. Yet you are communicating that if you do A and B you can't get HIV, which is not true. It can only be true when one is sexually abstinent or mutually faithful to an uninfected sexual partner, was not born with HIV, and is guarding himself or herself from non-sexually transmitted HIV infections. People who were virgins at marriage or are faithful within marriage can contract HIV. And once that happens then many really curse God. They castigate God, saying, “How can you give me a disease of prostitutes when I was a virgin and faithful in marriage?” Had someone told them that what is considered right behavior in religious sexual morals may not necessarily be safe in public health terms, the cursing and lamenting would be far less. If someone had told them that drinking your own water is a right thing to do, but drinking your water when you are not sure of its source and upkeep and it is also not boiled may not be a safe thing to do, or that driving your car is the right thing to do, but driving it without a safety seat belt on is an unsafe thing to do, then they would have understood that both their getting married and their having sex faithfully was not automatically translating into HIV infection immunity. No, getting married and being faithful in marriage are the right thing in religious terms, but they do not confer automatic immunity from all possible sources of HIV infection!
So, SAVE is expanding on the current HIV prevention messages that we have to say, “Let's help people to talk about all the safe practices that are possible: abstinence, mutual faithfulness to an uninfected sexual partner, condom use, prevention of mother to child transmission, safe blood transfusion, safe injections, safe circumcision, and so on.” As soon as the vaccines are on the table, we'll be talking about them. As soon as the microbicide research is successful, we will be talking about microbicides so that people know that in conjunction with ABC, there are other safe measures that can be taken to protect one's self and others from both sexual and non-sexual modes of HIV infections and transmissions.
The A—Access to treatment and to nutrition message in the SAVE approach is very critical in the African context, where people who need treatment are not on treatment and their nutritional levels are low. And the treatment access we are talking of is not just for ARVs but for opportunistic infections and for STD management.
The V in SAVE stands for voluntary, routine and stigma-free HIV counseling and testing. Why are we adding in routine? Because people tend to go for an HIV test, and when they are lucky and it is a negative result, they frame it and put it in the sitting room and say, “I'm negative.” But it should be a routine thing to do. If you did it when you were going to have your first sex, have it when you are going to have your second. If you did it when you were having your first baby, there's nothing wrong in doing it when you are having your second or third.
To take into consideration this routine aspect, the Ministry of Health is saying, “We should not ask people whether they want to be tested. We should ask them instead if there is any reason why they should not be assisted to know their HIV status.”
The E in the SAVE message/approach is actually what makes everything else in our HIV prevention efforts tick. If we do empowerment right, we will not be struggling with issues of low abstinence, unfaithfulness, or low condom use or even other unsafe behaviors and practices. Among empowered persons, families, communities, and nations, safe behaviors and practices are known, easy to adopt, popular, and almost routine, while unsafe ones are difficult to adopt, unpopular, and rare. The empowered persons, families, and communities have the skills and services, they have the information, and they have the supportive environment that enables them to translate their safe behavior intentions into practice. They are empowered. An empowered person, family, or community in the HIV and AIDS context is the one that is able to translate what they accurately know as safe into practice correctly and consistently. They have the right information; they have the right attitudes, the right skills, the right services, and the right, safe, and supportive environments. Whether it is in economics, culture, politics, science, or in religion. As long as their individual, family, local community, and national level environment is supportive, they translate behaviors they know as safe into practice. But if the environment is not supportive, if they lack information, if they don't appreciate personal and collective risk and vulnerability, however much you talk about AIDS, abstinence, faithfulness, condom use, prevention of mother-to-child transmission, safe blood, safe injections, and safe circumcision, most will not translate these into practice.
For me, I regard ABC as electric light switches. If you switch on an electric light switch, light will only come if there is proper wiring done in the house, if there are electric wire transmission lines bringing the electric power in the house and if there are the turbines running to produce electricity. That is the empowerment route I'm telling you. If there is no wiring system, or if it is faulty, and if there are no turbine engines to facilitate electric light emission, no electric light will brighten your room however much you yell at your family members to switch on lights!
Even proper and consistent condom use depends on people having information, having the skills to know how you put a condom on and how to remove one. It also depends on whether they are available and whether people can access them and are literate enough to be able to distinguish what is right and wrong culturally from what is unsafe or unsafe medically and to check their expiry dates! It also depends on whether my culture, my religion, and my spouse accept them and whether my place of work, residence, education, healthcare, and worship are reinforcing that good and safe practice. This is what I call empowerment.
You have noted that HIV does not attack communities and nations randomly. When you look at maps of those nations with high HIV prevalence and you compare them with maps of nations with low per capita incomes, high illiteracy and infant mortality rates, high rates of malnutrition, unemployment, and high rates of wealth differentials between those who know and have and those who don't, then you can see a definite story emerging. I can close my eyes, and if you tell me the GDP of a country, its literacy levels, the maternal mortality rate, the unemployment rate, and its levels of infrastructural development, I can estimate and tell you its HIV prevalence rate.
That is where I and my fellow religious leaders have to work very hard. Because we have individualized and sexually moralized AIDS so much, we have quite often missed the linkages between HIV and poverty, HIV and literacy, HIV and violence, HIV and poor governance, HIV and culture, or HIV and marginalization. We've missed those variables which have a big bearing on how sexual acts in a given family or community will be done, by who, when, and why.
You talk of HIV, and they say, “Oh, you must repent.” But the repentance most commonly preached is not repenting about bad and unsafe cultures or poor politics, bad economics, or the incapacitating international relations in trade, development, and aid. No, we are talking about repenting about unlawful sex. Not even unsafe sex! It's true, AIDS is a moral issue, but in a wider sense than just unlawful sex. Take, for example, a family that refuses to educate their girl children and instead marries them off at 14 years old. That is a moral issue. Take a country that is willing to spend USD 300 million on guns but nothing on ARVs for its HIV positive population and simply depends on the Global Fund and PEPFAR. That is a moral issue. What about a nation that does not have effective policies, programs, and budgets to tackle human rights abuses, and violations or to effectively manage conflict, corruption, and discrimination or to eliminate huge inequalities in employment, education, and healthcare services access?
Do you find that this view, of AIDS as a moral issue in a broad sense, is something that you have to bring religious leaders to? You must run into some who think differently.
Yes, but the good thing again is that the number of religious people who see HIV/AIDS in this broad and comprehensive way is growing.
Salvation, in the past, was looked at from the individual point of view. Yet, salvation is individual and communitarian at the same time. The good news is that there are many religious leaders who are now looking at the communitarian ethics element, and seeing that salvation and damnation can be at the individual, family, national, regional, continental, and global levels.
The other name for salvation, as you know, is redemption. When Moses was telling the Israelites, in Deuteronomy 28, he said, “If you obey, you will…If you disobey, you will…” The people who have individualized spirituality and morality have translated the “you” as being singular. But as we know, “you” can be singular, but it can also be plural. And when Moses was speaking he was not speaking to one Israelite as an individual. Rather he was speaking to the nation of Israel. And that is what we have missed. We have misinterpreted the text. He was saying, “You as a nation, you as a community. If your cultural practices, your socioeconomic policies, and your self-governance models in sexuality, food self-sufficiency, reproductive health, industry, are life-affirming, life-protecting, life-defending, and life-transforming qualitatively, and in line with God's will, then you will live long and be blessed.” That's what he meant. But now, it has been stripped of all those societal implications, and now it is, “If you smoke, if you drink, if you have unacceptable sex as an individual…” Fine, that's okay, but God is as interested in a holistic communal picture as he is interested in the individual picture.
When he says, “I will create a new heaven, and a new earth,” in Isaiah 65, he's talking about global issues, a better universe, and a better family of nations, isn't he? He's not just saying “When I create a new Gideon and a new Thomas,” is he? You and I have our role in his vision of things. But he also has a global way of seeing things. God was not necessarily obsessed with having USA, Uganda, Kenya, etc. In fact, I tend to think that in God's design, those political boundaries are not there. What is there is "my people," whether they are living in the United States or in Africa. For our selfish reasons we have compartmentalized ourselves and carved our own empires here and there and have said, “You can't cross up to here if you don't have a visa.” But I don't think that's what he intended.
Have you had other priests come to you to disclose their status?
Many. Over the years, maybe from 1998 onwards, people have consulted me. Even last Friday there was one. And that is what motivated me to set up the Africa Network of Religious Leaders Living with or personally affected by HIV (ANERELA+). Because I realized that everywhere I was going, people were saying, “Meet Canon Gideon, the first religious leader to open up about his HIV status.” And I asked myself, “Where is the second to open up? Where is the third?” So in 2002 we formed ANERELA+.
I got some money from Action Aid. I told them my story and said, “I want to find my colleagues.” They gave me money, which I used to hold a retreat in the Nyanga Hills in Zimbabwe from January 29 to February 2 2002. The people who came said, “Wow, this is wonderful. Can we continue meeting?”
When I was celebrating my 10 years of openness in October 2002, I invited them to Colline Hotel in Mukono as a follow-up meeting from the Zimbabwe meeting. This time the number was bigger. There were more positive clergy there. So we said, “Let's form a network.” So you can say that Zimbabwe was a prototype.
I saw some current research, aggregated by the World Bank, showing that while progress has been made in reducing prevalence rates overall in many places, there is one population, men who have sex with men, within which infections are increasing dramatically. Is that something you've been aware of in Uganda? I know that homosexuality is an issue that is difficult to raise in Uganda, especially in religious communities.
You are raising an issue which is very interesting. If we are going to make headway against HIV and AIDS, we have to differentiate between what is considered right morally and what is safe medically. If we go into the line of men who have sex with men, we are trapped into ideas about what we consider right and wrong in matters sexual. If we go the line of people having anal sex, whether homosexuals, heterosexuals, bisexuals, or transsexuals, we go into what is safe and what may be extremely unsafe in sexual matters. So when you say men having sex with men [MSM], people block their ears. And they are no longer thinking about how to protect these people. They are saying, “We cannot approve something that is morally wrong and legitimize it.” It's like when we talk about condoms and people shut off their ears before they even hear. In fact I've been arguing that it's high time we changed the name "condoms," because it's no longer helpful. Names mean a lot. Instead of calling it “condom,” a name which causes people to block their ears, let's change it to “concern.” So you enter a health clinic or pharmacy and say “Give me two ‘Concerns' of brand x or y.” If they ask why you need them then you say: “Because I'm concerned about his or her sexual health and my own, I want two ‘Concerns.' Actually, give me three.”
It's the same thing with these morally loaded issues. In the context of HIV prevention and management is the issue men having sex with men, or is it the issue of people who have anal sex, whether homosexual, heterosexual, or bisexual? Remember not all types of sexual acts transmit HIV and not all sex gives HIV. So men having sex with men in HIV prevention education is a misnomer because it begs another question: What type of sex are these men having—unsafe or safe? Does it involve the mixing of the three dangerous body fluids or not?
We know that with anal sex, not only semen is involved, but blood too is involved, and that is what makes it very unsafe and dangerous in terms of HIV infections and transmissions. It's not unsafe and risky in terms of HIV infection just because a man is having sex with a man. No! What makes it dangerous is that there is blood and semen involved in the sexual act. So, when we are presenting statistics, we should not be saying men having sex with men; we should be saying people having anal sex. Then the people listening would discover that it's not only homosexuals who are having anal sex (and are therefore at high risk of either causing or acquiring an HIV infection). There are heterosexuals and bisexuals who have anal sex, and they are at equal vulnerability levels as people who are naturally attracted to the same sex. For me that's how I would approach it.
If I am preaching about what is right, and what is wrong, I would never think that what is regarded as right or wrong for one person, family, community, nation, or continent is going to be seen as universally so for each person, family, community or continent at all times and in all contexts. Yet, what is safe and what is unsafe—what reduces (or enhances) life, threatens (or protects) life, takes (or preserves) life, wastes (or safeguards) life is universal.
I think the scientists would say that they are only trying to speak about what they specifically researched, right?
If that is so, then the scientists should be humble enough to not drive the whole language agenda. For me, when you say, “Who is most vulnerable?” I would not say truck drivers or men-having sex with men. I would say everyone who lacks accurate information, everyone who lacks skills for self-protection, everyone who doesn't know how to put on a condom. Anyone who doesn't know how to say “No to sex” when he or she wants to say “No.” Believe me, all these people are at risk and are very vulnerable to HIV and AIDS.
That is why I sometimes think that in the AIDS epidemic, we have an opportunity of asking ourselves, “What are these things that we have taken for granted that need overhauling?” The assumptions we have about people or the way we use language, for example. You go to the researchers, and they are telling you about condom use with non-regular partners. And you are saying, “Wait a minute, what are you trying to say or measure there? That you only use condoms when you are having sex with a non-regular partner? Are you saying that a regular partner can't give you HIV?” I can't comprehend that reasoning. Someone is conducting research and asking, “When was the last time you had sex with a non-regular partner? Did you use a condom?” As if a regular partner can't give you HIV! So you can even see that moral subjectivity has even entered into scientific objectivity. And science has taken on the language without analyzing what it means. In the context of HIV, one should be using condoms as long as he or she is having penile and vaginal sexual intercourse with someone whose status is not known as negative, whether one is in a regular sexual relationship or a non-regular one. Even HIV transmission and prevention in homosexuality has been moralized. We should re-examine our language to find out whether we are using AIDS to control our congregations or using our congregations to control AIDS.
But doesn't it hurt when some pastors talk about men having sex with men automatically going to hell?
The good news is that one has an option of whether he or she is going to believe that pastor or not. I was in a church one time when the priest was saying, “If you are sick here, you are not born again. I was born again in 1974, and since then I have never fallen sick. If you are sick and in this congregation, you are not born again.” I said, “Wait a minute. Am I right and he's wrong?” And I came to the conclusion that I am right, and he is wrong. And I got my Bible, and I walked out, and that was the end of my worship and fellowship era in that church. So either I can educate the preacher and say, “Hey, there's another dimension you have not seen.” Or I can just walk out and march where there is a better message that says that everyone is entitled to heaven by grace, because all of us are forgiven sinners justified by faith.
Do you know that I was beaten by both my teachers and my parents for using the left hand to write from age 5 years old to age 12 years old until they realized that that was the way I was programmed to think, write, and work? So now I am a very strong defender of left-handed people against stigma, shame, and discrimination.
I have also fought for the rights of people living with HIV and AIDS because I have that experience. I can argue it; I can defend it. But when it comes to MSM, I find that I face a limitation. I find that I can't argue convincingly for or against. I say, “Maybe there are things that I don't understand, unlike my being left handed from birth or my living with HIV for more than 17 years.” I have read and studied about HIV and AIDS for 17 years. I eat with it, sleep with it, wake up with it and have sex with it. It's part of me. I know how to manage it. Maybe 70 to 90 percent of the books and articles I read about currently are on HIV. But when it comes to MSM, I ask myself, “Do I have all the data? Are there things that I don't know, that are hidden from me? Whose book am I reading?” Because that also matters. You can get a book that is totally negative on MSM. You get another book and it is totally supportive. This knowledge is not value-neutral. And so I am willing to listen more to people who have that experience and to those who have objections so as to make my own line of thought which, I think, will always be a work in progress.
However, in the context of HIV and public health, we should insist that no one is excluded from information, from skills and services for self-protection and from supportive environments that make safe actions, behaviors, and practices known, easy to adopt, popular, and routine, while making unsafe ones difficult to adopt, unpopular, and rare. If you say “education for all” or “health for all,” surely that includes homosexuals, doesn't it? You can't say “education for all” except the left-handed. No! Then it is not for all!
As I have already said, in the global HIV education and prevention agenda, there are two types of religious leaders: those who are using AIDS to control their congregations, and those who are using their congregations to control AIDS.
Now, the group which is using AIDS to control their congregations is the one that will invoke anything they rightly or wrongly know about morals. They are quick to condemn, to judge and to dismiss people: “If you don't change your morals, you will die of AIDS. You will go to hell,” they say. Their HIV prevention messages are so loaded with their sexual morality and purity claims and convictions to force or scare people into submission. Whereas those groups that are using their congregations to control HIV/AIDS are more reflective, prayerful, empathetic, and sober. They are willing to learn more in order to do more and better. They, like the prophet Nehemiah, use inclusive language when lamenting about HIV and AIDS: “…I confess the sins we Israelites, including myself and my father's house, have committed against you….We have acted wickedly—in economics, politics, sexual health, culture, science and technology, education, infrastructural development, self governance, public health, medicine, international relations etc—against you!” [Nehemiah 1: 6-7, contextualized]
When you encounter a pastor, from Uganda or elsewhere, who moralizes about sex or AIDS, what is your approach?
I use different approaches depending on the time I have. The first one I use is to share my story. Because it prompts questions. People say, “This is a canon, this is a born again Christian, and these things have happened to him, so what does that mean?” You present the story as it is and you let people ask questions and respond to them.
The other method is to pass them through a values clarification process. This is a process where we have a statement, and put them on cards, and we give pastors two cards: one says agree, another disagree. You tell that each one is entitled to their opinion, and they can agree to the statement or disagree, but they should be prepared to defend their “agree” or “disagree” with reasons.
One statement is, “AIDS is a curse from God and a punishment for sexual sins.” Agree or disagree. Those who choose to agree and those who choose to disagree to the statement defend their opinions with reasons, and there is a dialogue. Then the participants go on to discuss other statements like: “If a woman wants to use a condom, but the man does not want to use the condom, then the woman has a right to refuse sex with the man.” “Condoms encourage immorality and therefore they should not be talked about as one of the HIV prevention options.” Agree or disagree. There is always debate. Depending on how you choose the responses as a facilitator, you can induce positive attitudinal change among your people.
The third route is the personal risk assessment exercise, which helps religious leaders to appreciate their personal risk and vulnerability irrespective of their current moral standing. And there we have about 12 questions we ask them. It's a confidential exercise. They can just see for themselves how they are or are not at risk. In the exercise, if you draw zero, then you're not at risk of HIV. If you have 10 and above, you're at risk. And you know what—we rarely get zeros!
There was an experience I'll never forget. There were 50 religious leaders, and we brought up this statement, “Condoms encourage immorality and therefore they should not be talked about.” Fifty out of 50 raised the “agree” card, and they defended their reasons. We went to risk assessment, and we scored the questions, and said, “This is a confidential exercise. If you feel it is a yes, write 10, and if it's a no, write 0. At the end of the exercise, tear the piece of paper. Destroy the evidence. This is for your own sake.” Then we started: “Were you born after 1981?”; “Have you ever shared skin piercing instruments”; “Have you ever had a blood transfusion?” “Have you ever had sex?”; “Have you ever had sex with more than one sexual partner?”; “Have you ever separated from your spouse and thereafter resumed sexual relations after some time”; “Have ever had an STD?”; “Have you ever received an injection from a non-professional injectionist who may not have cared to sterilize his or her equipment?”
Then we told them to change the scoring method for the next set of questions with a yes scoring 0 and a no scoring 10: “Were you a virgin when you married?”; “Was your sexual partner a virgin when you married her or him?”; “Do you correctly and consistently use condoms every time you have sex?” At the end, we told them, “If you got a zero, you are not at risk. But if you have 10 and above, we are not saying you have HIV, but you could be HIV positive, and the higher the score the greater the risk!” You could really see the hearts pumping through the coats. This one was in a semi-urban area in western Uganda.
Because we had seen their negative attitudes on the condoms earlier during the values clarification exercise, we had hid the box of condoms we had brought to AIDS training workshop for practical demonstration purposes. Because their attitudes were too negative, we had reasoned we could be roughed up. But after scoring the risk assessment exercise, the box of condoms had disappeared from where we hidden it. [...]