Irreplaceable campaigner for people with HIV<\/p>\n
Chris W. Green, Contributor, Jakarta, chrisg@rad.net.id<\/p>\n
\"It's not the label -- it's how you wear it.\" In 1995, when
\nSuzana Murni was told at the age of 23 that she had AIDS, the
\nlabel represented shame.<\/p>\n
Like most in that situation, she knew little about the disease
\nand didn't know where to look for more information. \"OK, I'll
\njust wait to die,\" was her initial response.<\/p>\n
But after six months, she didn't get sick. She just became
\nangry: angry at the way her partner had been treated after he
\ndied of AIDS; angry at the way the label was worn; angry that she
\nknew so little about the disease. So she started to look for
\ninformation.<\/p>\n
Suzana found she was not alone. She met with others with HIV,
\nand found that these meetings broke their feelings of isolation.
\nSo she formed the first peer support group for HIV positive
\npeople, which she called Spiritia. As she put it, \"in the absence
\nof treatment, spirit is what you need to go on.\"<\/p>\n
Early on, Suzana recognized the role of advocacy to counter
\nthe shame. And because of her excellent English -- she was
\neducated in the USA -- it was natural that she should go
\ninternational with her advocacy.<\/p>\n
In October 1995, she attended the Third International Congress
\non AIDS in Asia and the Pacific in Chiang Mai, Thailand. There
\nshe met Susan Paxton, a founder of the Asia Pacific Network of
\nPeople living with HIV (APN+), and a leading AIDS activist in the
\nregion.<\/p>\n
Paxton persuaded Suzana to join the board of APN+ as
\nIndonesia's representative and shortly following this she became
\na regional representative for GNP+, the Global Network of People
\nLiving with HIV. She also attended a regional AIDS meeting in
\nPakistan, and came back extremely concerned about the way people
\nwith HIV were stigmatized throughout the region.<\/p>\n
In 1996, she attended the International AIDS Conference in
\nVancouver, Canada, where she gave a moving speech at the closing
\nceremony. Part of this was broadcast on TV in Indonesia, although
\nfew here made the connection.<\/p>\n
But her greatest concern was for people living with the virus
\nat home.<\/p>\n
\"Suzana worked tirelessly to advocate for and build a strong
\nnetwork of HIV-positive people in Indonesia,\" recalls Paxton.
\n\"She wanted to ensure that they had the skills to respond
\nappropriately to the epidemic and that they be given a voice at
\nall levels of government.\"<\/p>\n
Suzana used Spiritia as a means to press for the greater
\ninvolvement of people with AIDS, a principle first outlined at
\nthe Paris AIDS Summit in 1994, and one that she wholeheartedly
\nsupported.<\/p>\n
Spiritia organized the first national meeting of people with
\nAIDS in 1998. This meeting provided the first opportunity for
\nmost of the participants to meet others with AIDS, and to share
\nfeelings and experiences.<\/p>\n
From the start, Suzana emphasized the need for advocacy to
\nincrease access to treatment. But unlike many other activists,
\nshe recognized that treatment was not just a matter of pills.
\nBecause at the time of her diagnosis she had felt so unempowered
\nby her lack of knowledge of the disease, she strongly encouraged
\nme to start WartaAIDS, a newsletter to provide information on all
\naspects of treatment for people living with the virus. She also
\nput great value upon other complementary therapies, not just
\nherbal remedies, but including music and spiritual therapy.<\/p>\n
Underlying all was her total belief in the value of peer
\nsupport. Those who have not witnessed it can perhaps not imagine
\nthe effect of one first meeting with her by people recently
\ndiagnosed. You could almost see the burden being lifted from
\ntheir shoulders; the first smile perhaps in weeks; the
\nunderstanding that they are still people of worth, with a role
\nto play in helping others to protect themselves.<\/p>\n
Those who heard her talk in public recognized her quiet
\ncharisma. But it was her peers who felt immediately touched by
\nher presence.<\/p>\n
Suzana was of course well aware of the drugs that could extend
\nthe life of people with AIDS. But it was not until the middle of
\n2001 that their prices became affordable. Even then, it was a
\nstruggle to get her to start -- she felt that it would be unfair
\nfor her to get treatment that was still out of reach of most of
\nher peers.<\/p>\n
Sadly, it was too late. Despite starting the therapy in August
\n2001, Suzana was diagnosed with lymphoma in October. This was
\nshortly after her poignant and moving address at the opening
\nceremony of the Sixth International Congress on AIDS in Asia and
\nthe Pacific in Melbourne, Australia. A commitment she insisted on
\nfulfilling despite her weakness.<\/p>\n
She started chemotherapy, but the cancer spread, and Suzana
\nslowly became weaker. She finally passed away in her home in the
\nearly hours of July 6, surrounded by her family, including her
\nadopted son who had just had his second birthday.<\/p>\n
Suzana was perhaps better known in global forums than she was
\nhere at home. Messages of grief and support have poured in from
\naround the world.<\/p>\n
Peter Piot, Executive Director of the Joint United Nations
\nProgram on AIDS (UNAIDS), noted the \"tremendous loss for all
\nthose who stood to benefit from her courage and tireless
\nefforts.\" Many remember her calmness: as one friend from New
\nZealand put it, \"... never was there a more gentle soul that gave
\nso much and was so dedicated to helping others.\"<\/p>\n
Shaun Mellors from South Africa, one of her greatest
\nsupporters since her early days with GNP+, put it: \"She was
\nindeed an inspiration to so many, she spoke out when no one else
\ncould, she inspired when others were fatigued, and she will
\ncontinue to inspire as we fondly remember her. Her light and
\ninspiration will never fade, and her passing reminds us that the
\nfight is far from over.\"<\/p>\n
And from the USA, another friend notes that \"Suzana's gentle
\nspirit and quiet strength inspired many of us, and will continue
\nto do so each time we remember her.\"<\/p>\n
But those who will miss her most are the nameless \"little
\npeople\" who were always her first concern. Among these were the
\nsex workers and transvestites who are Spiritia's \"neighbors\", to
\nwhom she dedicated an outreach program called Blok M After Dark.<\/p>\n
She was always most at home meeting with others with HIV,
\nencouraging them, supporting them, empowering them, and
\ncomforting them. For these, Suzana is irreplaceable.<\/p>\n
She wore her label, not with shame, but with confidence and
\nhumility.<\/p>",
"url": "https:\/\/jawawa.id\/newsitem\/irreplaceable-campaigner-for-people-with-hiv-1447893297",
"image": ""
},
"sponsor": "Okusi Associates",
"sponsor_url": "https:\/\/okusiassociates.com"
}