Putting face to people living with HIV
Tantri Yuliandini, The Jakarta Post, Jakarta
It could have been a photograph of any happy family: a mother laughing along with her two children at a private joke. Only, it wasn't just any family, but one that has fought the anguish and social discrimination experienced when a member of the family is a person with HIV/AIDS.
"My son is a living poster, a real example of how HIV can infect injecting drug users. Let the remainder of his life be an example so that young people do not have the same fate," said Sri Daryanti, an iron-willed lady and mother of Andreas P. Istiawan, 26, a drug user and HIV-positive.
People living with HIV/AIDS, or PLHA, have been reviled, scorned, isolated and evicted from their own homes for being what they are. People fear them and shy away from them.
An exhibition at the Nusantara I building at the House of Representatives (DPR) compound in South Jakarta shows they are just like anyone else. All have their own story to tell, of despair and of courage.
They are the portraits of courage itself. They could have easily slunk away and hid themselves from public scrutiny; instead, they looked scorn in the face and turned it into awareness. They are Andreas, Eta, Faraj, Hasni, Hendrianto, Juharto, Sri, Sulasi, Tuty and Yuni.
"We are the real experts on how to live with HIV/AIDS. We are the ones who can make a difference, starting with ourselves, to consider ourselves not different," Andreas said at a media conference at the exhibition opening.
He said he and his friends were concerned PLHAs, making a stand for their right to live in society -- without being stigmatized and without discrimination.
Sulasi, from Malang, East Java, is pictured among trees, pointing at something in the distance with his face full of determination. Perhaps she is quoting her husband and source of strength, "everyone dies, not only those with HIV/AIDS; death has already been ordained."
Or maybe she is appealing, "fear AIDS but not the people with it."
Vincentius Hendrianto, 33, has known rejection and hatred. He has suffered discrimination by the medical community who refused to treat him because he is HIV-positive.
"For people like me, discriminatory treatment and being stigmatized by society are more frightening and hurtful than HIV itself," he said.
Hendrianto's refusal to give in compelled him and five others to form JOY (a Yogyakarta network for people living with HIV/AIDS), in December 2002. Besides being an acronym, JOY also became their motto for "enjoy, joyful, joyous."
"We want to enjoy life, not be stressed all the time. For PLHAs, the key to survival is to maintain one's mental, and after that, physical condition," he said.
Marghareta Otaturu (Eta) is an HIV-positive housewife from Timika, Papua. The loss of her child to AIDS led her to join an organization to raise HIV/AIDS awareness in Papua.
"In Papua the AIDS issue is treated as a secret. People with AIDS are regarded as sick, bone-thin and helpless. But we are able people, we can still work," she said.
Experts estimated the number of people living with HIV/AIDS in Indonesia at 90,000 to 130,000 in 2002. But those people are not just statistics, they are an integral part of the community.
"I've always known discrimination was bad, but not until I met these people did I realize just how difficult it is to come forward, how badly discrimination has affected them. I realized how I have become repressed by my own ignorance. They are not just statistics," photographer of the exhibition Rio Helmi said.
During the photo-taking process for the exhibition, the Bali- based photographer got to know his subjects well.
"I wanted to show them in their own environment, the way they are. My job was to facilitate the expression of their hearts (through photographs)."
The Tegak Tegar, Hidup Positif bersama HIV (Tall and Strong, Live Positively with HIV) photography exhibition is dedicated to the memory of late activist Suzana Murni, who passed away on July 6, 2002. The exhibition at Nusantara I Building, DPR complex, runs until Feb. 21, 2003.