Human dignity and the will to live with AIDS

Human dignity and the will to live with AIDS

The following article is written by a group of HIV carriers and was presented by Susan, a volunteer with Yayasan Pelita Ilmu, a foundation focusing on AIDS issues. Issued on Jan. 19, it coincided with the first anniversary of Support, a monthly bulletin published by the foundation.

JAKARTA (JP): The year 1995 is history. It has become a mirror that reflects last year's events. We have stepped into 1996. Nothing will change unless we are determined to give it more meaning. Definitely, the struggle will start again.

In 1995, the negative label was still with us HIV carriers. We were told to repent for our sins and to return to the right track because we had gone wrong and got the virus as punishment. How strange. How can people decide whether other people are sinful? Whenever this kind of statement was made by a public figure, it gave the public a dark picture about people with AIDS/HIV (PWAs). PWAs are considered sinners, and HIV a curse. AIDS remains a word full of scorn. HIV/AIDS volunteers always face the question: "Yuck, aren't you afraid?" Families and friends worry more about their good names than taking care of PWAs and accepting them as they are.

For us, HIV is a small creature which is undermining our immune systems. But, for many people, things are not that simple. In 1995, discrimination against HIV carriers was rampant. Groups of people were accused as being the source of the calamity. They were obliged to have their blood tested so that they wouldn't endanger the public. HIV tests were conducted without their consent. No counseling was provided during these serious times. Those who were found HIV positive were sent home. Some hospitals rejected HIV-positive patients and told them to leave the emergency units. PWAs were not allowed to use ambulances. Their privacy was violated, their identities were leaked to unauthorized persons. There were companies which ordered mandatory HIV testing. Would-be employees were judged not by their capability but by their HIV status. PWAs were considered not only as unproductive people, but also as people who could affect a company's reputation and disrupt the working atmosphere. They were considered possible burdens to the company, which would have to pay their high medical costs. Insurance companies excluded them from their services. Discrimination took place not only against them, but also against the doctors who treated PWAs.

People raised the issue of the HIV dilemma. PWAs' rights versus other people's rights. PWAs' privacy and medical confidence versus public interest and safety. Some said PWAs must tell their sexual partners that they had HIV. PWAs were blamed if their partners were infected through sexual intercourse with them.

But doesn't sexual intercourse require the willingness of both parties? Don't both parties have the responsibility to protect themselves as well as their partners? Just because we are the first to be tested, we are the ones to blame. Who knows if the seemingly innocent partners are among the 164,636 people in Indonesia suspected of having HIV? Some people even condone euthanasia -- for the sake of public safety.

We had difficulty getting the necessary medicine in 1995. There was a passive attitude in the provision and registration of certain drugs. Not many people needed these drugs (called "orphan drugs"), therefore they were not highly profitable. But, they are very important to us. At times, our need is so bad that our friends must go overseas to get the drugs. Not all of us can do it. To prolong our lives, we must take anti-retroviral drugs daily. They are very expensive, about Rp 400,000 for a package which lasts 20 days. Again, not all of us can get them easily.

People are now more aware of the danger of HIV/AIDS, but it seems that there should be more campaigning to support the infected people. HIV/AIDS should be avoided, but not the people. Who can play a bigger role in disseminating the message and building the image of people with HIV if not public figures and the media?

Prior to World AIDS Day on Dec. 1 last year, the media exposed PWAs. They were seen on TV with computer graphics or little white dots blocking their faces. PWAs did not use their real names in media reports. This reflected the world facing PWAs, which made it hard for them to be what they were. What hurt more, however, was that the exposure was often entitled The confession of PWAs. And they expected PWAs to say: "Don't be like us."

PWAs were exposed not as those working for the campaign against HIV/AIDS, but as victims and persons who had stepped out of line. People avidly read the story or crowded around a TV, showing their pity and saying: "Aduh (My goodness), don't you ever be like them". We are not criminals who hide our crimes, and then confess to become an example for the public. Our biography is not a source of sensation. If we decide to come out, this is because we want to take part in the important job, not to be part of a freak show.

If things don't change, adequate care and support will be further away. We still must hide for a while for the sake of our wellbeing. At the 1995 AIDS Conference in Chiang Mai, Thailand, Indonesia volunteered to host the 1997 AIDS Conference. We of course hope that there will be major sessions involving us as well as PWAs from other countries at the next conference.

This article is not merely a complaint. In this difficult situation. We have friends who support us faithfully. We have families who accompany us tirelessly. It is impossible to pass the year 1995 without remembering our friends who care for us. They build our confidence and they don't leave us. They show us we will be strong if we are together. None of us want special treatment. We struggle to put our lives back together as normal human beings. We want to free our precious lives from the fear of discrimination and stigmatization.

You might ask, "what do they look like, the HIV-carriers and AIDS sufferers?" If you see inside yourself, you'll see us. We are not a collection of statistics. Each stat is a human being. We, just like you, are human beings who have feelings, thoughts and hopes. We can love and we can be loved. We respect life and we want to fill it with happiness. We are also sad when the time to say goodbye comes, and we hate anguish. Like you, we can't judge other people and we can't be judged. If we don't do anything to limit people's bad opinion of us, we restrict the desire of a human being to live.

Many friends of ours have died from AIDS, and it is estimated that more Indonesians will join the struggle to live with HIV inside their bodies. Things must improve because we are capable of making things better. We are in the first month of 1996. There are many things to do during the rest of the year.

The spirit of a human being cannot be ruined by a disease, and it should not be broken by fellow human beings. (sim)