Activist a voice for people with AIDS<\/p>\n
Hera Diani, The Jakarta Post, Jakarta<\/p>\n
Do not ask Suzana Murni how she contracted the Human
\nImmunodeficiency Virus (HIV).<\/p>\n
\"I've never been interested in finding out from where I got
\nit. I don't know and I don't want to know. It could have been
\nanything, except inherited from my mother,\" said Suzana, who was
\ndiagnosed HIV-positive in 1995 when she was 23.<\/p>\n
\"I'm more interested in thinking about the future instead of
\ngetting stuck in the past.\"<\/p>\n
To the government, Suzana is a statistic, one of 2,313
\nIndonesians diagnosed with HIV\/AIDS according to Ministry of
\nHealth data. But unlike most others in her position, unable to
\nbear the social stigma and condemnation that often accompanies
\nthe condition, soft-spoken Suzana is probably the only Indonesian
\nto have publicly acknowledged her HIV-positive status.<\/p>\n
She has come out and put a face to AIDS, but she does not want
\nthat fact to become a judgment about whether she was an \"innocent
\nvictim\".<\/p>\n
\"I don't see this disease as something shameful or a disgrace,
\nwhatever caused it. It's a health problem. There's nothing scary
\nor humiliating about it,\" she said.<\/p>\n
\"People also are quick to judge us as immoral. That's the most
\npainful thing. What do they know? There are so many immoral
\npeople out there, like corruptors or thieves. I found that many
\nsex workers also work hard to help their families and children.\"<\/p>\n
In a bid to fight the stigma and provide a support
\norganization to advocate the rights of people with AIDS (PWAs),
\nSuzana established the Spiritia Foundation in the same year she
\nwas diagnosed with HIV.<\/p>\n
\"I knew nothing about the disease. There was hardly any
\ninformation either about what to do when you are infected.
\nMeeting people who were infected also helps a lot. It eliminates
\nseveral myths surrounding the disease,\" said Suzana, who married
\nin 1998 and adopted a baby son.<\/p>\n
Spiritia has since intensified its efforts in advocating the
\nrights of PWAs. The foundation also gives training to its members
\nso that they will be able to speak in public forums.<\/p>\n
However, many people who contract HIV are still reluctant to
\nbe open, even to their family, because of the fear of rejection.<\/p>\n
Suzana is fortunate that her family supported her from the
\noutset of her diagnosis.<\/p>\n
\"We said to her that we didn't know anything about it, so
\nlet's just learn together,\" said Suzana's mother, Mrs. Fadjran.
\n\"We didn't become overprotective nor overaffectionate with her so
\nthat she wouldn't feel even more sick,\" she said.<\/p>\n
\"Of course it is very difficult for us, but we accept it
\nnaturally. I said to her that God has a purpose, and knows that
\nyou (Suzana) will be an exceptional case. We also told her to be
\nopen to people about it.\"<\/p>\n
However, Mrs. Fadjran acknowledged that the family had become
\nmore worried now that Suzana had lymphoma, a cancer that affects
\nabout 3 percent of PWAs.<\/p>\n
Suzana and her mother hate the way the media exploits the AIDS
\nissue, including on the annual World AIDS Day, which fell on
\nSaturday.<\/p>\n
\"It'll be a good story, I know, but it doesn't have any
\nadvocacy. I want to talk about the limited access to medicine or
\nany other aspect, not just the sad sides,\" she said.<\/p>\n
She also hopes other PWAs will go public about their lives.<\/p>\n
\"Because if we hide, we're keeping the stigma. We have to show
\nthe human side of the disease -- that we can still be productive,
\nactive and can still contribute to others,\" she said.<\/p>",
"url": "https:\/\/jawawa.id\/newsitem\/activist-a-voice-for-people-with-aids-1447893297",
"image": ""
},
"sponsor": "Okusi Associates",
"sponsor_url": "https:\/\/okusiassociates.com"
}