Human dignity and the will to live with AIDS<\/p>\n
The following article is written by a group of HIV carriers
\nand was presented by Susan, a volunteer with Yayasan Pelita Ilmu,
\na foundation focusing on AIDS issues. Issued on Jan. 19, it
\ncoincided with the first anniversary of Support, a monthly
\nbulletin published by the foundation.<\/p>\n
JAKARTA (JP): The year 1995 is history. It has become a mirror
\nthat reflects last year's events. We have stepped into 1996.
\nNothing will change unless we are determined to give it more
\nmeaning. Definitely, the struggle will start again.<\/p>\n
In 1995, the negative label was still with us HIV carriers. We
\nwere told to repent for our sins and to return to the right track
\nbecause we had gone wrong and got the virus as punishment. How
\nstrange. How can people decide whether other people are sinful?
\nWhenever this kind of statement was made by a public figure, it
\ngave the public a dark picture about people with AIDS\/HIV (PWAs).
\nPWAs are considered sinners, and HIV a curse. AIDS remains a word
\nfull of scorn. HIV\/AIDS volunteers always face the question:
\n\"Yuck, aren't you afraid?\" Families and friends worry more about
\ntheir good names than taking care of PWAs and accepting them as
\nthey are.<\/p>\n
For us, HIV is a small creature which is undermining our
\nimmune systems. But, for many people, things are not that simple.
\nIn 1995, discrimination against HIV carriers was rampant. Groups
\nof people were accused as being the source of the calamity. They
\nwere obliged to have their blood tested so that they wouldn't
\nendanger the public. HIV tests were conducted without their
\nconsent. No counseling was provided during these serious times.
\nThose who were found HIV positive were sent home. Some hospitals
\nrejected HIV-positive patients and told them to leave the
\nemergency units. PWAs were not allowed to use ambulances. Their
\nprivacy was violated, their identities were leaked to
\nunauthorized persons. There were companies which ordered
\nmandatory HIV testing. Would-be employees were judged not by
\ntheir capability but by their HIV status. PWAs were considered
\nnot only as unproductive people, but also as people who could
\naffect a company's reputation and disrupt the working atmosphere.
\nThey were considered possible burdens to the company, which would
\nhave to pay their high medical costs. Insurance companies
\nexcluded them from their services. Discrimination took place not
\nonly against them, but also against the doctors who treated PWAs.<\/p>\n
People raised the issue of the HIV dilemma. PWAs' rights
\nversus other people's rights. PWAs' privacy and medical
\nconfidence versus public interest and safety. Some said PWAs must
\ntell their sexual partners that they had HIV. PWAs were blamed if
\ntheir partners were infected through sexual intercourse with
\nthem.<\/p>\n
But doesn't sexual intercourse require the willingness of both
\nparties? Don't both parties have the responsibility to protect
\nthemselves as well as their partners? Just because we are the
\nfirst to be tested, we are the ones to blame. Who knows if the
\nseemingly innocent partners are among the 164,636 people in
\nIndonesia suspected of having HIV? Some people even condone
\neuthanasia -- for the sake of public safety.<\/p>\n
We had difficulty getting the necessary medicine in 1995.
\nThere was a passive attitude in the provision and registration of
\ncertain drugs. Not many people needed these drugs (called \"orphan
\ndrugs\"), therefore they were not highly profitable. But, they are
\nvery important to us. At times, our need is so bad that our
\nfriends must go overseas to get the drugs. Not all of us can do
\nit. To prolong our lives, we must take anti-retroviral drugs
\ndaily. They are very expensive, about Rp 400,000 for a package
\nwhich lasts 20 days. Again, not all of us can get them easily.<\/p>\n
People are now more aware of the danger of HIV\/AIDS, but it
\nseems that there should be more campaigning to support the
\ninfected people. HIV\/AIDS should be avoided, but not the people.
\nWho can play a bigger role in disseminating the message and
\nbuilding the image of people with HIV if not public figures and
\nthe media?<\/p>\n
Prior to World AIDS Day on Dec. 1 last year, the media exposed
\nPWAs. They were seen on TV with computer graphics or little white
\ndots blocking their faces. PWAs did not use their real names in
\nmedia reports. This reflected the world facing PWAs, which made
\nit hard for them to be what they were. What hurt more, however,
\nwas that the exposure was often entitled The confession of PWAs.
\nAnd they expected PWAs to say: \"Don't be like us.\"<\/p>\n
PWAs were exposed not as those working for the campaign
\nagainst HIV\/AIDS, but as victims and persons who had stepped out
\nof line. People avidly read the story or crowded around a TV,
\nshowing their pity and saying: \"Aduh (My goodness), don't you
\never be like them\". We are not criminals who hide our crimes, and
\nthen confess to become an example for the public. Our biography
\nis not a source of sensation. If we decide to come out, this is
\nbecause we want to take part in the important job, not to be part
\nof a freak show.<\/p>\n
If things don't change, adequate care and support will be
\nfurther away. We still must hide for a while for the sake of our
\nwellbeing. At the 1995 AIDS Conference in Chiang Mai, Thailand,
\nIndonesia volunteered to host the 1997 AIDS Conference. We of
\ncourse hope that there will be major sessions involving us as
\nwell as PWAs from other countries at the next conference.<\/p>\n
This article is not merely a complaint. In this difficult
\nsituation. We have friends who support us faithfully. We have
\nfamilies who accompany us tirelessly. It is impossible to pass
\nthe year 1995 without remembering our friends who care for us.
\nThey build our confidence and they don't leave us. They show us
\nwe will be strong if we are together. None of us want special
\ntreatment. We struggle to put our lives back together as normal
\nhuman beings. We want to free our precious lives from the fear of
\ndiscrimination and stigmatization.<\/p>\n
You might ask, \"what do they look like, the HIV-carriers and
\nAIDS sufferers?\" If you see inside yourself, you'll see us. We
\nare not a collection of statistics. Each stat is a human being.
\nWe, just like you, are human beings who have feelings, thoughts
\nand hopes. We can love and we can be loved. We respect life and
\nwe want to fill it with happiness. We are also sad when the time
\nto say goodbye comes, and we hate anguish. Like you, we can't
\njudge other people and we can't be judged. If we don't do
\nanything to limit people's bad opinion of us, we restrict the
\ndesire of a human being to live.<\/p>\n
Many friends of ours have died from AIDS, and it is estimated
\nthat more Indonesians will join the struggle to live with HIV
\ninside their bodies. Things must improve because we are capable
\nof making things better. We are in the first month of 1996. There
\nare many things to do during the rest of the year.<\/p>\n
The spirit of a human being cannot be ruined by a disease, and
\nit should not be broken by fellow human beings. (sim)<\/p>",
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