I was diagnosed here in Jakarta in 1995, around the same time that my partner died. My family did not know much about AIDS. So
when the doctor said to wrap his body with a plastic sheet, we did.
But when we were told to burn his clothes and shoes, I felt awful. I
buried them in the ground instead.
I was very lonely and isolated. I thought, "OK, I'll just wait to
die." I stopped working -- I'd been a clothing designer. I didn't do
anything. After six months, I didn't get sick, and I was pretty
pissed off. I also realized that there must be many things about HIV
that I didn't know. There was information about prevention and
condoms and even clean needles, but nothing about care and treatment
for people who already have the virus. Five years ago, all we heard
was that people who were infected died quickly. We were groping in
the dark and believing in the gossip and myths of the media.
That's when I started searching for information and other
HIV-positive people. I had a very good doctor, through whom I made
contact with others who have the virus -- a mother, two gay guys, a
straight man. At first, we all felt very relieved. If we worked
together, we could break the feeling of isolation. We had fun -- the
first I'd had in several months. This became the first peer support
group for HIV-positive people in Indonesia, called Spiritia, from
the word spirit. In the absence of treatment, spirit is what you
need to go on.
In 1995, information about support, care or positive living was
almost nonexistent. I was very lucky that I could speak English.
When I was in ninth grade, I was a high school exchange student in a
small town in Louisiana -- Lake Charles -- and later on went to art
school in the United States. That's where I got my first HIV
brochures and books, which I later translated and distributed in
Indonesia. Those brochures and books are also where I learned that
an HIV-positive person can get a dignified burial -- just like
anybody else. I felt guilty and angry about what had happened to my
partner, but it wasn't my fault -- I didn't know better. Still, I
felt I hadn't done enough for him.
That anger has been the motivation that drives me. I want to see
big changes happen while I'm still around. That's why I got
involved. At the moment, I'm Spiritia's director. I am also a
founding member of the National Coordinating Group of the
International AIDS Candlelight Memorial, formed in 1996. I chair the
Indonesian Communication Forum of NGOs [nongovernmental
organizations] Working in HIV/AIDS, which I represent on the
National AIDS Commission. And since 1995, I've represented Indonesia
for the Asia Pacific Network of People Living with HIV/AIDS (APN+),
helping document human rights violations and violence against people
with HIV. And I'm also still designing clothes. I have a couple of
women who do the embroidery for me.
I do not take any antiretrovirals -- they're too expensive. A
regimen would cost $2,000 a month, and the average Indonesian makes
maybe one-fourth of that. Economically, in Indonesia, I fall in the
middle. After the Asian economic crisis of 1997, there were more
low-income people than ever. The few Indonesians who are very rich
can travel to Australia every three months for checkups and
medication. I can sell my car for a six-month supply -- then what?
So I just take it easy. I learn to understand my body and other
options to stay healthy. I enjoy my life and strive to make it
better without forcing myself. My family -- my parents and my
husband, Sahrul -- are my major source of strength. My brother and
sister are also very cool and sometimes volunteer for my
The situation for people with AIDS in Indonesia has improved over
the past five years but discrimination remains -- as it does
Even if a country endorses the proper ethical principles
recognized all over the world -- voluntary, anonymous testing,
confidentiality and counseling -- it doesn't implement them.
National HIV surveillance is supposed to be anonymous, but blood
samples are labeled with names. People still get tested without
their consent -- poor patients in hospitals, for example, job
applicants having medical checkups, many people -- and after the
result comes, there is no counseling, and their confidentiality is
breached, causing a shock, more stress and loss of hope right from
the very first moment of living with HIV. And there have been plenty
of cases of people testing positive and then losing their jobs or
sex workers being put out in the streets.
AIDS programs in Indonesia, whether run by the government or
NGOs, have always focused on general prevention. Treatment, care and
support of HIVers have all been left in the hands of those whose
lives are directly affected, including doctors who have patients
with HIV. NGOs in provinces with high prevalence have begun creating
their own support programs, but most are still reactive and
unprepared for the growing number testing positive. Even in the past
few months, the number of IV-drug users who have found out they have
HIV has increased exponentially. After all this time, people -- in
government, NGOs, health care facilities, schools and families --
are finally realizing that HIV is all around them.
It can be empowering for HIVers to speak out here, just as it is
in the West, but it is also terrifying. People in Asia literally
risk their lives to come out -- even people who are just
suspected of having HIV are in danger. Recently a person in
India was set on fire. Here in Indonesia one was attacked by a mob.
There are many, many horrible stories.
If coming out doesn't kill you directly, it can kill you slowly.
You may lose your livelihood, so you can't afford to feed yourself
adequately, let alone pay for drugs. You can lose your house. I know
a positive couple who live like nomads because nobody will rent to
them. Speaking out in public can also rob you of your dignity,
because people will judge you harshly, turning you into a bad
example. If you speak out about how badly you've been treated in a
hospital or by your community, the authorities can easily silence
As I've said, it's all about shame. But we can't afford to say,
"We are good people and they are bad people" anymore. I think
Indonesia is now starting to wake up.