Activist a voice for people with AIDS

Activist a voice for people with AIDS

Hera Diani, The Jakarta Post, Jakarta

Do not ask Suzana Murni how she contracted the Human
Immunodeficiency Virus (HIV).

"I've never been interested in finding out from where I got
it. I don't know and I don't want to know. It could have been
anything, except inherited from my mother," said Suzana, who was
diagnosed HIV-positive in 1995 when she was 23.

"I'm more interested in thinking about the future instead of
getting stuck in the past."

To the government, Suzana is a statistic, one of 2,313
Indonesians diagnosed with HIV/AIDS according to Ministry of
Health data. But unlike most others in her position, unable to
bear the social stigma and condemnation that often accompanies
the condition, soft-spoken Suzana is probably the only Indonesian
to have publicly acknowledged her HIV-positive status.

She has come out and put a face to AIDS, but she does not want
that fact to become a judgment about whether she was an "innocent
victim".

"I don't see this disease as something shameful or a disgrace,
whatever caused it. It's a health problem. There's nothing scary
or humiliating about it," she said.

"People also are quick to judge us as immoral. That's the most
painful thing. What do they know? There are so many immoral
people out there, like corruptors or thieves. I found that many
sex workers also work hard to help their families and children."

In a bid to fight the stigma and provide a support
organization to advocate the rights of people with AIDS (PWAs),
Suzana established the Spiritia Foundation in the same year she
was diagnosed with HIV.

"I knew nothing about the disease. There was hardly any
information either about what to do when you are infected.
Meeting people who were infected also helps a lot. It eliminates
several myths surrounding the disease," said Suzana, who married
in 1998 and adopted a baby son.

Spiritia has since intensified its efforts in advocating the
rights of PWAs. The foundation also gives training to its members
so that they will be able to speak in public forums.

However, many people who contract HIV are still reluctant to
be open, even to their family, because of the fear of rejection.

Suzana is fortunate that her family supported her from the
outset of her diagnosis.

"We said to her that we didn't know anything about it, so
let's just learn together," said Suzana's mother, Mrs. Fadjran.
"We didn't become overprotective nor overaffectionate with her so
that she wouldn't feel even more sick," she said.

"Of course it is very difficult for us, but we accept it
naturally. I said to her that God has a purpose, and knows that
you (Suzana) will be an exceptional case. We also told her to be
open to people about it."

However, Mrs. Fadjran acknowledged that the family had become
more worried now that Suzana had lymphoma, a cancer that affects
about 3 percent of PWAs.

Suzana and her mother hate the way the media exploits the AIDS
issue, including on the annual World AIDS Day, which fell on
Saturday.

"It'll be a good story, I know, but it doesn't have any
advocacy. I want to talk about the limited access to medicine or
any other aspect, not just the sad sides," she said.

She also hopes other PWAs will go public about their lives.

"Because if we hide, we're keeping the stigma. We have to show
the human side of the disease -- that we can still be productive,
active and can still contribute to others," she said.