Breaking silence about AIDS vital to ending ignorance

By Chris W. Green

JAKARTA (JP): "Time to speak out about AIDS in the spirit of friendship without prejudice." So reads the theme for Indonesia's participation in the 17th International AIDS Candlelight Memorial, which was held last Sunday around the world. This is the most significant grassroots event of the AIDS year, with origins in an almost spontaneous explosion of support for people with AIDS that occurred in San Francisco in 1983.

Our theme differs little in concept from that proposed by the international organizers: "Break the Silence: Honor Every Death, Value Every Life." It says much for the state of our world that after almost two decades of the AIDS epidemic, there continues to be a need to call for open talk about the disease. This silence, this unwillingness to talk openly, only accelerates the spread of the virus.

Paradoxically, the new openness in Indonesia over the last few years has made it even more difficult to speak out about the reality of AIDS. Once more AIDS is being presented as a moral problem, and some community leaders have elevated it to the level of a crusade against immoral behavior. In such an environment, it is not surprising that few, very few, of the people infected with HIV are willing to talk about it openly, or even share the information with family or close friends.

Experience around the world has shown that people with AIDS have much to offer in responding to the disease. For example, in development of prevention programs, who better to advise than those for whom such programs have been demonstrably unsuccessful?

In speaking out, they can put a human face on the disease -- and demonstrate that most people who are infected show no outward sign of the infection. It is for these and other similar reasons that the UN body concerned with AIDS, UNAIDS, has instituted a program known by the rather inelegant acronym "GIPA", standing for "Greater Involvement of People with AIDS".

According to UNAIDS, this program recognizes the important contribution people infected or affected by HIV/AIDS can make in response to the epidemic, and creates space within society for their involvement and active participation in all aspects of that response.

With less than 1,000 people in Indonesia who know that they are living with HIV/AIDS -- the actual number of those infected is unknown, but thought to be around 50,000 -- there are few examples of this involvement, because so few infected people are willing to take the risk of speaking out.

There are few role models to indicate how family and communities will react to knowing that they are living close to people with AIDS, and many of those are discouraging. Cases of discrimination continue throughout the country -- discrimination in housing, in employment, in education, in health care, and in social life. Although the official policy outlaws such discrimination, it is difficult to fight it alone, if no one is willing to speak out.

Malam Renungan AIDS Nusantara 2000 (the night for AIDS reflection), as the AIDS Candlelight Memorial is known in Indonesia, aimed to draw our attention to the dangers of this silence.

As Suzana Murni, founder of Yayasan Spiritia (a peer support group for people infected and affected by AIDS) and a member of the group coordinating participation in the event puts it: "We hope that this will encourage us to be willing to talk about AIDS without references to morality, and without the prejudice which condemns people infected by HIV and those who are deemed to engage in risky practices, such as sex workers, gays, transvestites, and drug users.

"Let us develop a friendly and supportive atmosphere surrounding AIDS, so that all feel safe and comfortable to seek or disseminate information about HIV. Such an atmosphere will help persuade people who know they are infected, or think that perhaps they might be, to seek the support they need."

So many events were held that several had to be scheduled during the week before May 21, the official "day". Spiritia together with a group of Bikers called Classic Bikers Batavia held a commemoration in the Bulungan Youth Center in Blok M. Among those attending were members of several groups that "hang out" around that area, including transvestites and dropouts.

The centerpiece of this event was the reading of the Indonesia Declaration 2000 by Suzana. This Declaration, signed by more than 120 organizations around the country and overseas, was presented to the Coordinating Minister for Peoples' Welfare and Poverty Eradication, at a ceremony in his office on May 17.

On May 18, Yayasan Pelita Ilmu held a special memorial event at their support center for people with AIDS in Jakarta. The climax of the occasion was the lighting of 60 lamps, each dedicated to one of their friends who had died of AIDS. In addition, they displayed four quilts, each consisting of eight sections made as a commemoration by family or friends of those who have died of AIDS in Indonesia. The concept of the AIDS memorial quilt originated in America and has now reached around the world to Indonesia.

Similar events were held throughout the week and all around the country -- by some 180 organizations in more than 70 towns, large and small.

As Nafsiah Mboi, the well-known AIDS activist, put it last year: "Since 1983, the Candlelight Memorial has been a symbol of healing, hope, and solidarity in the global mobilization against AIDS. May the message and candles of the Candlelight Memorial throw back the darkness and cast their light far into the future not only for all who are living with AIDS but for all our brothers and sisters, young and old, wherever they are found in fear and pain."

--The writer is an AIDS activist and a member of the National Coordinating Group for AIDS Mobilization in Indonesia, which coordinates participation in the AIDS Candlelight Memorial throughout the country.