AIDS activist puts a face on statistics

By I Wayan Juniartha

SANUR, Bali (JP): Suzana Murni is perhaps not much different from many other 20-something women today, with her delicate appearance, soft-spoken manner, her love of casual attire, her pierced nose and her fondness for the popular TV-series Shinchan (her mobile phone rings the theme of the show).

Yet there are two not-so-ordinary facts about her life.

First, she has HIV, and, second, she has come out publicly to tell of her fight against the virus and, more importantly, the accompanying social stigma.

By founding Spiritia, a non-governmental organization aimed at providing help and support for people with HIV/AIDS, in Jakarta in December 1995, Suzana has paved the way for greater involvement of people with the condition in all and every level of HIV/AIDS health programs and the policy-making process.

She said she deliberately set out to put a face on the anonymous statistics for the disease in the country, despite the inevitable prejudice and judgmental attitudes to be found in a collective society where talk about subjects such as sex and drug use have long been taboo.

There are startling stories of ignorance about the disease, of people being thrown out by their families when their status is known, of health workers balking at treating HIV-positive patients and, the final indignity, of the bodies of people who died of complication from AIDS left unwashed and unburied.

But the strength Suzana has showed in dealing with the problems and discrimination which are an inevitable part of being HIV-positive did not come easily.

Suzana acknowledged her shock when she was informed in April 1995 that she had the virus.

"I felt empty, numb, after being told that I was infected with something of which I didn't have any knowledge of how it worked," she said.

"All I knew was that Freddy Mercury got it, Rock Hudson got it -- and they died."

With the assumption that her days were numbered, Suzana, like many people who suddenly find out they are HIV-positive, spent the next four months in a state of numbness.

She said she did nothing but wait for what she thought would be the inevitable end of her young life.

And then she snapped out of her depression, realizing that she had to do more for herself and others who were HIV-positive or had developed the full-blown syndrome.

Suzana credits her family as particularly important in helping her find the strength she needed to continue living a normal life.

Buoyed by the support of her family, she took the courageous step three years ago of openly declaring she had HIV.

First, it was to small groups of activists, and later, gradually, to the general public.

Instead of bringing isolation and suspicion, her openness has generally invited warm and sympathetic responses.

Now married to an understanding husband, himself an AIDS activist, and the mother of a cute one-year-old adopted son, Suzana said she now considered HIV something that has made her life richer and deeper, not a curse.

Here is an excerpt of an interview with Suzana, conducted during an AIDS workshop last week in Bali, in which she talks about her life, her work with Spiritia and her hopes for the future.

Q: What was your family's reaction to the news that you were HIV-positive?

A: My parents have always been my closest friends. I told them about my condition before I told anybody else. And they just said, "Let's face it together." They did not suddenly become overprotective, and nor did they disown me.

Well, that's no surprise for me since my parents have always been so supportive. We as a family, me and my younger brothers and sisters, were brought up in a home where freedom and understanding were abundant.

My parents never like putting pressure on their children, and they were so open, too. So we never had any urge to lie to them, because we knew that whatever we did they would understand.

My parents also educated us from an early age on the importance of personal responsibility, that you must be ready to face the consequences of your actions.

So if my little brother tripped over a chair, my parents would not blame the chair, saying "naughty chair, naughty chair" like many Indonesian parents do, but they would tell off my brother for his clumsiness.

I myself reacted badly to the news. I felt all my dreams, including the one of becoming an architect, were shattered. I distanced myself from all my close friends.

I was just 21 years old at that time, and I felt my life was finished.

With the help of my family, some four months later I found the courage to continue my life. I wanted to know everything about HIV/AIDS, but there wasn't sufficient information available at that time. So, I wrote many letters asking for information to my friends and institutions abroad.

That was the time when Spiritia came into existence?

Well, yes. Initially, it was aimed at filling that information gap, by gathering and later providing correct information on HIV/AIDS. It also acted as a support group, a sort like AA and NA, for those people with HIV/AIDS who, like me, felt alone.

We did not have a permanent office at that time, so the meetings were held in the activists' houses. It's fun though, having meetings at different places each month.

Through this support group, people with HIV/AIDS, their partners and their families could share their experiences, knowledge and suffering -- and by doing that we gave strength to each other.

Now we have a permanent office with seven full-time volunteers and some 20 part-time volunteers. About 50 people with HIV/AIDS from all over Indonesia are already involved in our programs. That's a small number, and we still have a long way to go.

One of our main objectives is to change the public and policy- makers' perception on HIV/AIDS issues. I believe they put too much attention on prevention efforts, and not on after-care efforts.

If adequate attention was given to after-care efforts, such as lowering the price of HIV/AIDS medicine, the development of more support groups in various regions of the country and the abolition of discrimination, the prevention efforts would have a better chance of reaching their goals.

Without the proper after-care efforts, people who have HIV/AIDS, knowing that there is no support system and no medicines available, and that they will be discriminated against, will refuse to take the test. Eventually they would rather go "underground", which in the end will make it more difficult to stop the HIV/AIDS' chain of transmission.

Have you ever been discriminated against?

Of course. The minute they found out that I was HIV-positive, the staff of the private hospital where I took the test suddenly lost their hospitality.

They distanced themselves from me. I was not even allowed to clean my plates and glasses in the hospital's kitchen. They had to be cleaned in my own room instead.

I also felt betrayed because I did not know the whole nature of or any information concerning the test they asked me to take.

Some friends of mine stopped visiting my home, fearing that they might get infected if they drank from the glasses in my house. But that kind of discrimination was nothing compared to that faced by other people with HIV/AIDS who were fired from their jobs, locked inside a room by their family or isolated by the rest of their community.

The discrimination is caused by fear, or ignorance, or both, and the only way we can fight it is through providing the public with correct information.

It's interesting that you opted to openly declare your status after that experience.

Well, I didn't think that having HIV/AIDS in my body was a disgrace or something that I must be ashamed of. And, my family also felt the same. I haven't done anything wrong, and I want to present myself as it is.

I believed that if I declared my status, I would feel relieved.

The second thing was during that time I realized that in Indonesia, HIV/AIDS had no human face. If we talked about HIV/AIDS, then we talked about statistics, data, theories. How could we expect people to understand the importance of this issue if we failed to make them believe that the issue was real and did exist?

One way to make the issue appear more real was by having one of the "victims" stand up and declare their status. And, that's precisely what I have done.

Of course, I did not do it in one single leap. I did it gradually. First I declared my status to certain groups only, then in closed meetings of HIV/AIDS related groups.

Eventually I could not contain the urge to openly declare it and I started doing it in open public meetings or on radio talk shows.

How did your status affect your social and romantic life?

When I was first diagnosed as having HIV in 1995, I did not have a boyfriend. I met a wonderful guy, Gogon, who was an outreach worker and counselor at Mitra Foundation (an AIDS information foundation), at the end of 1997.

We became very close. But I was worried since I did not know whether he was aware of my status. I wanted him to know everything before we got too close.

So I asked one of his friend to inform him of my status, because I did not have the guts to do it myself. But then I could not contain myself and delivered the news myself.

It turned out that he had already known for quite some time. What a relief. We got married in 1998. He has been a wonderful husband and a great friend for me ever since. I can communicate everything with him.

We have an adopted son. His name is Sidharta Syah. Of course, I want to have a baby myself. But you must remember that I have been HIV-positive for seven years, and the possibility of my entering the AIDS stage in the near future is always hovering in the back of my mind.

Not until I have wider access to HIV/AIDS medicine and a certain level of conviction that I will stay healthy for many years will I seriously think about having a baby of my own.

I don't want to have a baby and then fall seriously ill.

Availability, or lack of, medicines is one of the main problems for people with HIV/AIDS?

Yes, they are all imported, so the price is very high. Moreover, the demand for these medicines is quite low. If the demand was high we might find a way to lower the price.

We also face a problem of poor knowledge among most of our doctors in prescribing the correct dosage of the medicines, and their ability in monitoring whether a certain medicine is effective or not.

What is your hope for the future?

I really would like to see people view and communicate with people with HIV/AIDS in the same manner they do with people who have the flu. I mean without fear, discrimination or prejudice.

I also would love to see the diminishing role of Spiritia. With the growing involvement of people with HIV/AIDS, better networking and sufficient training and education, people with HIV/AIDS will be able to speak for themselves.

Spiritia then will become an ardent background supporter for them. And that's where it is supposed to be.

I also hope that people with HIV/AIDS will be involved in all and every level of HIV/AIDS health programs and the policy-making process. Without recognizing and understanding the needs of people with HIV/AIDS, any program and policy will end up futile.

In retrospect, how do you view the fact that you are HIV- positive?

It has made me richer as a human being -- I don't mean that in the material sense!

I am rich because I have so many friends, and have more knowledge. It also has provided me with the foundation to have better, deeper and richer relationships with other people.

It also has redefined the word friendship for me. I am able to see and identify whether somebody is my true friend or not.

It has also given me a tranquil sense of nothing-to-lose, as if nothing can hurt me anymore.

Would you change things if you were given a second chance?

No, thank you. I would rather live this life.