Breaking silence about AIDS vital to ending ignorance

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.