Irreplaceable campaigner for people with HIV

Irreplaceable campaigner for people with HIV

Chris W. Green, Contributor, Jakarta, chrisg@rad.net.id

"It's not the label -- it's how you wear it." In 1995, when
Suzana Murni was told at the age of 23 that she had AIDS, the
label represented shame.

Like most in that situation, she knew little about the disease
and didn't know where to look for more information. "OK, I'll
just wait to die," was her initial response.

But after six months, she didn't get sick. She just became
angry: angry at the way her partner had been treated after he
died of AIDS; angry at the way the label was worn; angry that she
knew so little about the disease. So she started to look for
information.

Suzana found she was not alone. She met with others with HIV,
and found that these meetings broke their feelings of isolation.
So she formed the first peer support group for HIV positive
people, which she called Spiritia. As she put it, "in the absence
of treatment, spirit is what you need to go on."

Early on, Suzana recognized the role of advocacy to counter
the shame. And because of her excellent English -- she was
educated in the USA -- it was natural that she should go
international with her advocacy.

In October 1995, she attended the Third International Congress
on AIDS in Asia and the Pacific in Chiang Mai, Thailand. There
she met Susan Paxton, a founder of the Asia Pacific Network of
People living with HIV (APN+), and a leading AIDS activist in the
region.

Paxton persuaded Suzana to join the board of APN+ as
Indonesia's representative and shortly following this she became
a regional representative for GNP+, the Global Network of People
Living with HIV. She also attended a regional AIDS meeting in
Pakistan, and came back extremely concerned about the way people
with HIV were stigmatized throughout the region.

In 1996, she attended the International AIDS Conference in
Vancouver, Canada, where she gave a moving speech at the closing
ceremony. Part of this was broadcast on TV in Indonesia, although
few here made the connection.

But her greatest concern was for people living with the virus
at home.

"Suzana worked tirelessly to advocate for and build a strong
network of HIV-positive people in Indonesia," recalls Paxton.
"She wanted to ensure that they had the skills to respond
appropriately to the epidemic and that they be given a voice at
all levels of government."

Suzana used Spiritia as a means to press for the greater
involvement of people with AIDS, a principle first outlined at
the Paris AIDS Summit in 1994, and one that she wholeheartedly
supported.

Spiritia organized the first national meeting of people with
AIDS in 1998. This meeting provided the first opportunity for
most of the participants to meet others with AIDS, and to share
feelings and experiences.

From the start, Suzana emphasized the need for advocacy to
increase access to treatment. But unlike many other activists,
she recognized that treatment was not just a matter of pills.
Because at the time of her diagnosis she had felt so unempowered
by her lack of knowledge of the disease, she strongly encouraged
me to start WartaAIDS, a newsletter to provide information on all
aspects of treatment for people living with the virus. She also
put great value upon other complementary therapies, not just
herbal remedies, but including music and spiritual therapy.

Underlying all was her total belief in the value of peer
support. Those who have not witnessed it can perhaps not imagine
the effect of one first meeting with her by people recently
diagnosed. You could almost see the burden being lifted from
their shoulders; the first smile perhaps in weeks; the
understanding that they are still people of worth, with a role
to play in helping others to protect themselves.

Those who heard her talk in public recognized her quiet
charisma. But it was her peers who felt immediately touched by
her presence.

Suzana was of course well aware of the drugs that could extend
the life of people with AIDS. But it was not until the middle of
2001 that their prices became affordable. Even then, it was a
struggle to get her to start -- she felt that it would be unfair
for her to get treatment that was still out of reach of most of
her peers.

Sadly, it was too late. Despite starting the therapy in August
2001, Suzana was diagnosed with lymphoma in October. This was
shortly after her poignant and moving address at the opening
ceremony of the Sixth International Congress on AIDS in Asia and
the Pacific in Melbourne, Australia. A commitment she insisted on
fulfilling despite her weakness.

She started chemotherapy, but the cancer spread, and Suzana
slowly became weaker. She finally passed away in her home in the
early hours of July 6, surrounded by her family, including her
adopted son who had just had his second birthday.

Suzana was perhaps better known in global forums than she was
here at home. Messages of grief and support have poured in from
around the world.

Peter Piot, Executive Director of the Joint United Nations
Program on AIDS (UNAIDS), noted the "tremendous loss for all
those who stood to benefit from her courage and tireless
efforts." Many remember her calmness: as one friend from New
Zealand put it, "... never was there a more gentle soul that gave
so much and was so dedicated to helping others."

Shaun Mellors from South Africa, one of her greatest
supporters since her early days with GNP+, put it: "She was
indeed an inspiration to so many, she spoke out when no one else
could, she inspired when others were fatigued, and she will
continue to inspire as we fondly remember her. Her light and
inspiration will never fade, and her passing reminds us that the
fight is far from over."

And from the USA, another friend notes that "Suzana's gentle
spirit and quiet strength inspired many of us, and will continue
to do so each time we remember her."

But those who will miss her most are the nameless "little
people" who were always her first concern. Among these were the
sex workers and transvestites who are Spiritia's "neighbors", to
whom she dedicated an outreach program called Blok M After Dark.

She was always most at home meeting with others with HIV,
encouraging them, supporting them, empowering them, and
comforting them. For these, Suzana is irreplaceable.

She wore her label, not with shame, but with confidence and
humility.