Everyday stories of living with HIV

Everyday stories of living with HIV

Kerlap-Kerlip Mozaik: Berjuang Hidup dengan HIV; (A
Glittering Mosaic: Struggles of Living with HIV); By Putu Oka
Sukanta; Yogyakarta: Yayasan Galang & Ford Foundation, 2000

JAKARTA (JP): Even though the first AIDS case was found in the
country 13 years ago, the syndrome is still one of the most
misunderstood health issues in Indonesia.

Two things usually come into play when people discuss AIDS:
sex and morality. It is loose morals and bad behavior that causes
one to get the disease. After all, as long as we are faithful to
our traditional values, we do not need to worry about this
strange, foreign disease. Why make a fuss about AIDS? Are we not
blowing up the issue when there are only less than 1,500 cases in
this country of 210 million people?

For Indonesians who lived in western Europe or North America
during the late 1980s and early 1990s, AIDS may perhaps be
something they are familiar with. Yet, even though they may have
read about Rock Hudson, Freddy Mercury, Greg Louganis, Magic
Johnson or Ryan White, and want to learn more about this
phenomenon and how it affects people's lives, are they also aware
that AIDS is right next door to them?

This book may open their eyes. Yes, AIDS is here in
Indonesia. It is around us and is affecting Indonesians, too.
Yet, far from the Rock Hudsons and Freddy Mercuries whose deaths
made media headlines, in this book one learns about the lives of
ordinary people like Lidia and Alvin and Cisca and Cici, and how
the virus has affected their lives. They come from various places
like Batam, Kalimantan, Surabaya and Bali but they do not live
the glamorous lives of well-off urban Indonesians.

Putu Oka Sukanta, mostly known as a poet and short story
writer, has long been involved in HIV/AIDS through his work as an
acupuncturist and herbal medicine specialist. It is no
coincidence that his knowledge of HIV accumulated through
numerous encounters with AIDS activists, medical doctors and
people with AIDS (PWAs). He writes like a reporter who has done
interviews with these people -- and indeed what makes this book
interesting is that 20 chapters of this book are almost written
as 20 journalistic reports, combining data, information and
interviews with real people, plus observations, reflections and
even poetry.

The main character is Pidarta -- Balinese for messenger -
which one can obviously find to be the representation of the
author. Putu Oka's ability to write poetically makes it even more
interesting to read. Pidarta travels to Bekasi, Batam,
Yogyakarta, Surabaya, Bali, Makassar and Malang. He tells us
stories about PWAs struggling hard to accept their condition,
many of them only aware of AIDS after they were diagnosed as HIV
positive. The lack of information, which could have prevented
their infection, seems to be a common thread among them.

It also tells us about the humiliation and discrimination they
sometimes have to face. And most of all, the book also tells us
about empathy, the human touch which we all need in our lives.

The book starts with Pidarta's encounter with Lidia, an HIV-
positive woman from South Kalimantan who dared to speak in public
about her HIV status. He travels on to various places. He tells
us of Diwati reading a brochure on AIDS and women. Although
numerous brochures and leaflets on HIV/AIDS have been published,
how effective are they when it comes to real life? Some still
contain judgmental values, instead of factual information,
particularly when it comes to the transmission of the virus.

Pidarta also tells us about health workers who are reluctant
to clean the remains of person who died of AIDS, mainly due to
misinformation, and how HIV is still not yet covered by insurance
policies, for reasons unclear.

When discussing AIDS, one cannot avoid the issue of politics.
Pidarta's notes on pages 112-113 tell us how provincial AIDS
commissions need to be more active, that organizations and
agencies should stop grouping target audiences as assets and
geographic areas as "property", but should instead collaborate
together to fight a common cause.

Most interesting are that these stories are of real people
with real lives, stories about their worries and concerns, and
most of all of hope, that there is a life, even if one has the
virus. Who would not be touched to read about the courage of
Melati, who dared to travel around and speak in front of local
government officials? Or the gay man Wisnu and the sex worker
Darmi sharing their personal lives and concerns? There is also
Luh Geg who supervises volunteers in Kuta Beach and Alvin from
Bali who stood tall and shared his HIV status to the public at
the annual candlelight memorial in Malang.

These are ordinary people who fought their own ignorance, and
refused to let ignorance surround other people, and who now
courageously emerged as activists. Even for those who are not
affected by the virus, this book inspires us, telling us that
there is always hope in life, and for those who work in this
field, we are not alone in this fight against this deadly
disease, as Pidarta mentions in his last chapter.

For those who want to understand the human touch of HIV and
AIDS in Indonesia, this is definitely the book to read, although
unfortunately it is only available for those who read Indonesian
at present.

-- Danny I. Yatim

The reviewer is a psychologist and writer.