IT'S
ALL ABOUT SHAME
In Indonesia, we value politeness at all
times. We respect our elders, cherish our
relatives and are close to our neighbours.
But when you catch HIV, all of these good
qualities can boomerang for you, your family,
and your village. It's all about wirang.
Wirang that you don't take care
of your children,
so they catch HIV. Wirang that
your wife
is a bad woman who plays around
while you
are away. Wirang that your son
is gay, that
you have a promiscuous employee
or neighbour.
Wirang makes it easy to save
face by blaming
those who are weaker.
Wirang has influenced the distribution
of
HIV prevention materials. An
official in
the Kotamadya Semprul, where
Lastri lives
in, once refused to conduct an
AIDS education
class because "I don't want
people to
get the wrong idea about our
district--that
we have sex workers here. Wirang
is the source
of the terrible silence of AIDS
in Indonesia.
Lastri was diagnosed in Kotamadya
Semprul
in 1995, around the same time
that her husband
died. Her family didn't know
much about AIDS.
So when the doctor said to wrap
his body
with a plastic sheet, they did.
But when
they were told to burn his clothes
and shoes,
she felt awful. She 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 didn't do
anything. After
six months I didn't get sick
and I was very
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," said Lastri.
Five years
ago, all they heard was that
people who were
infected died quickly. They were
groping
in the dark and believing in
the gossip and
myths of the media.
That's when she started searching
for information
and other HIV positive people.
She had a
very good doctor, dr. Amri, through
whom
she made contact with others
who have the
virus--a mother, two gay guys,
a straight
man. At first, they all felt
very relieved.
If they worked together, they
could break
the feeling of isolation. They
had fun--the
first she'd had in several months.
In the
absence of treatment, spirit
is what you
need to go on.
From dr. Amri, she learned that
an HIV positive
person can get a dignified burial--just
like
anybody else. She felt guilty
and angry about
what had happened to her husband,
but it
wasn't her fault--she didn't
know better.
Still, she felt she hadn't done
enough for
him.
In 1995, information about support,
care
or positive living was almost
non-existence.
However, the situation for people
with AIDS
in Indonesia has improved over
the past years--but
discrimination remains. Even
if the country
endorses the proper ethical principles
recognized
all over the world--voluntary,
anonymous
testing, confidentially and counseling--it
doesn't actually 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
jobs or
sex workers being put out of
the streets.
It can be empowering for HIV
positive patients
to speak out here, just as it
is in the West,
but it is also terrifying. People
in Indonesia
literally risk their lives to
come out--even
people who are just suspected of having HIV are in danger. Recently, a
person in Indonesia was attacked by a mob
and was almost set on fire. There are many,
many horrible stories.
If coming out doesn't kill you
directly,
it can kill you slowly.
You may lose your lively hood,
so you can't
afford to feed yourself adequately,
let alone
pay for drugs. You can lose your
house. Lastri
knows a positive person, who
lives like a
nomad because nobody will rent
kamar kost to him.
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
you.
As I have said, it is all about
wirang.
