The Jakarta Post, May 14, 2007
Ugandan reverend shares his story on life with HIV/AIDS
There have been many stories written on people living with AIDS, but this one is
unusual. It centers on the experience of a reverend who, to this day, does not know
how he was infected. The Rev. Canon Gideon Baguma Byamugisha of the Church of
England recently spoke with The Jakarta Post's Agnes Winarti about how he
manages to continue living and working despite the virus.
Question: How were you infected with HIV? Answer: On April 30, 1991, I was told that
my wife had died from an AIDS-related illness. I was truly shocked to learn this. I
decided to go and find out whether I was also positive. So, I went for an HIV test in
January 1992 and it confirmed that I was positive. I was devastated, shattered.
Why was I shattered? First, because we were told at that time that once you have
AIDS, you won't live more than three years. It was not true, but that was what people
knew. Second, because of the association between HIV and sin, bad behavior and
loose behavior at that time. And here I am, a religious leader, a real Christian, a
lecturer at a theological seminary being told I was positive. How is that going to
translate in people's ears? Are they going to dismiss me? Was he living a double life?
The stigma, the shame, the denial, surrounding me at that time was really great. All of
those things caused depression, confusion, anxiety. And I asked: "God, why me?"
I did try to investigate it. Unfortunately, my investigation could not give me the right
answer that I needed because I was told that HIV has about four or five roots of
infection. The first root is having unsafe sex. I was there. I had married in 1987. I had
not tested for HIV. My wife had not been tested for HIV. So, I could have been infected
through sex. Second, I was told that it is passed through contaminated blood. In my
body, I had over 300 injections to treat malaria and other diseases. I could not know
which of those injections was contaminated. The only sure thing was that I could look
back and say that I did not get infected by my mother or her breast milk, because
when I was born in 1969, HIV/AIDS was not known. So, when people asked me how I
got infected ... blank. I can only guess and the guesses may be inaccurate.
How do you cope with the stigma faced by people living with HIV/AIDS? First, I tried
to identify why there is stigma and I discovered there are two types of stigma: self
stigma and societal stigma. People stigmatize themselves. When someone points a
finger, you say, 'Oh, he knows I am positive.' You are insecure. You also over-blame
yourself. 'Oh this sex I had before marriage, oh this injection I had.' You feel so guilty.
All of these things can lead to depression. The first thing I did was defeat those self
stigmas. 'Gideon, you are not the worst sinner in the world to have AIDS. There are
many other people who are sexual offenders, and have done worse things and they
are negative. So why do you want to blame yourself for the situation you are in? Don't
believe what you hear from people.' On societal stigma, why is there stigma coming
from society? Because they fear contagion, they fear picking the virus up from other
people. Then I educated them. 'You cannot get the virus from me by hugging, shaking
hands, eating with me, that's not true,' I told them. The fear of immediate death that
comes from somebody stigmatizes people who are positive.
Those stigmas come from associating infection with sin. I developed this paradigm
that churches and the faith community must understand that there's a difference
between right behavior and faithful behavior. If you see someone with malaria, you
don't say, 'Oh, now I know how he got malaria, he went into other people's beds and
slept there without their permission.' No. The only problem was that he did not put a
mosquito net over his bed. So I educate people. It has been a continuing effort since
1992 until now.
How do you deal with societal and religious taboos against measures to curb the
spread of HIV/AIDS? We use different methods. First, is the testimony method,
talking about experiences, about yourself. Everyone lacking information or services on
self protection can be infected. Others are through education -- seminars and
workshops -- where you teach them, show them facts about transmission and
prevention and help them assess their own risks. So, we lead people to discuss, to
find new answers to new problems. You lead them to the genie of self-discovery. So,
by the time the discussion ends, the person gets new information and has a new
attitude, hopefully.
What's your comment on some religious leaders here who consider AIDS a disease
infecting only those who have no faith in God? I only want religious leaders here to go
in front of their God, pray more and ask for more revelations and guidance on this
epidemic. And they should read more, listen more to people who are positive or
personally affected. Hopefully, they could get a new perspective.
How do you see the condom-use campaign between marital and extramarital
couples? That is a very hard question to answer. In religion, if you are not married you
are not supposed to have sex. And AIDS is not going to make religious leaders
change that statement. AIDS or no AIDS, sex before or outside marriage is a sin. So
when you are talking about condoms, don't correlate it with the marital or extramarital
issue. Now, when a religious leader talks about condoms, he's talking about safe sex.
But safe sex is not safe sin. Does this mean that religious leaders are saying you can
continue sinning as long as you use condoms? No. It is God who says don't commit
adultery. The same God who says don't kill or don't commit suicide. So, if you are
doing things that we, religious leaders, still consider unfaithful, you are still under the
obligation to protect your life. It's like a double command.
What particular approach or strategy that has worked in Uganda do you think might
work here too? Comprehensive prevention that combines treatment with prevention.
The treatment facilitates prevention and prevention facilitates treatment. If you prevent
more, you will treat less. If you treat other people who are positive, then you are
reducing the viral load saturating the public. So, you are reducing the risk. I still feel
that the SAVE model or strategy would be best in Indonesia. Promoting safe
practices, abstinence, faithfulness, condom use, mother-to-child information, safe
circumcisions, etcetera.
What does the Ugandan government do to reduce the spread of HIV/AIDS? The
government provides leadership and establishes frameworks and policies, through
which others can act. The most successful thing the government did was adopt a
multi-sectoral strategy. AIDS is not just a health issue, it is a multi-sectoral issue,
involving all sectors of society.
How do you perceive the role of the government and multinational pharmaceutical
companies in providing medicines for developing countries? I actually feel that
treatment and prevention are roles for everyone. There should be roles for individuals,
families, communities, governments and the international community. The
pharmaceutical companies have the obligation to ensure that life saving medicine and
life enhancing medicine can be accessible for those who cannot afford the price they
are offering. Otherwise, we run the risk of creating a world where life is for the rich and
death is for the poor. Pharmaceutical companies have already done a good job; they
have tried to reduce prices. They have gone into partnerships with the government.
But my feeling is they can do better.
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