Stories of Women in The Asia-Pacific Network of People Living with HIV

118 Pages·2009·6.18 MB·English

Diamonds are formed under immense
pressure to become the strongest and most
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brilliant natural substance known on earth.
This book tells the stories of ten women and a girl in Stories of Women from the Asia Pacific
the Asia-Pacific region who have overcome incredible life
Network of People Living with HIV
challenges to become strong advocates for the rights of all
women living with HIV and AIDS.
UNIFEM Southeast Asia Regional Office
UN Building
5th Floor, Rajdamnern Avenue
Bangkok 10200 THAILAND
www.unifem-eseasia.org
Asia Pacific Network of People Living with HIV/AIDS
51/2 Soi Ruam Rudee, Ploenchit Road
3rd Floor, Ruam Rudee Building III
Bangkok 10330 THAILAND
www.apnplus.org
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ABOUT
Women of APN+ (WAPN+) is the women’s working group of APN+.
Its vision is the empowerment of women living with HIV and AIDS in the Asia-Pacifc region to provide
a united voice, improve the quality of our lives and ensure our leaders protect our rights.
WAPN+’s mission is to increase solidarity and communication among women living with HIV in the Asia
Pacifc region and improve our skills, knowledge and opportunities to fully participate in an effective
response to HIV and AIDS, and to advocate for the needs of women living with HIV at a regional level.
UNIFEM is the women’s fund at the United Nations. It provides fnancial and technical assistance to
innovative programmes and strategies to foster women’s empowerment and gender equality. Placing
the advancement of women’s human rights at the centre of all of its efforts, UNIFEM focuses its activities
on four strategic areas:
- Reducing feminized poverty;
- Ending violence against women;
- Reversing the spread of HIV/AIDS among women and girls;
- Achieving gender equality in democratic governance in times of peace as well as war.
Disclaimer
The following stories are based on the transcriptions of interviews with the subjects. The views
expressed in this collection do not necessarily represent the views of UNIFEM, the United Nations,
or any of its affliated organizations.
ACRONYMS
APN+ Asia-Pacifc Network of People Living with HIV/AIDS
DEDICATED TO
Oom, Suzana and Sarah Jane ARV antretroviral
AusAID Australian Agency for Internatonal Development
The frst diamonds to shine in our region.
CCW Cambodian Community of Women living with HIV/AIDS
CPN+ Cambodian People living with HIV/AIDS Network
GIPA Greater Involvement of People living with HIV and AIDS
GNP+ Global Network of People Living with HIV/AIDS
ICAAP Internatonal Congress on HIV/AIDS in Asia and the Pacifc
KLASS Kuala Lumpur AIDS Support Services Society
PWN+ Positve Women’s Network of India
STI sexually transmited infectons
TB tuberculosis
UNAIDS The Joint United Natons Programme on HIV/AIDS
UNDP United Natons Development Programme
UNIFEM United Natons Development Fund for Women
CD4 Cluster of Diferentaton Antgent 4, to measure the level
of immune system
August 2009
ACRONYMS
APN+ Asia-Pacifc Network of People Living with HIV/AIDS
DEDICATED TO
Oom, Suzana and Sarah Jane ARV antretroviral
AusAID Australian Agency for Internatonal Development
The frst diamonds to shine in our region.
CCW Cambodian Community of Women living with HIV/AIDS
CPN+ Cambodian People living with HIV/AIDS Network
GIPA Greater Involvement of People living with HIV and AIDS
GNP+ Global Network of People Living with HIV/AIDS
ICAAP Internatonal Congress on HIV/AIDS in Asia and the Pacifc
KLASS Kuala Lumpur AIDS Support Services Society
PWN+ Positve Women’s Network of India
STI sexually transmited infectons
TB tuberculosis
UNAIDS The Joint United Natons Programme on HIV/AIDS
UNDP United Natons Development Programme
UNIFEM United Natons Development Fund for Women
CD4 Cluster of Diferentaton Antgent 4, to measure the level
of immune system
August 2009
Foreword Foreword
Dr. Jean D’Cunha Regional Program Director Co-chair Naoko Kawana
UNIFEM East & Southeast Asia Asia Pacifc Network of People Living
Regional Offce, Bangkok. with HIV/AIDS (APN+)
“When I talked about the experiences I had gone through with my children, I could see that all It is my pleasure to let you know that “Diamonds” is published in the year of the
the mothers were crying. It really touched them…I thought, my story is powerful. I can use it to 15th anniversary of Asia Pacifc Network of People living with HIV (APN+).
change people’s attitudes”, says Maura, a HIV positive woman, whose story like the other women
APN+ is the network of people living with HIV (PLHIV) in Asia Pacifc region. It was established in 1994
featured in this publication, “Diamonds”, challenges us to LISTEN to the concerns and priorities
at a meeting in Kuala Lumpur by 42 PLHIV from eight countries. It was established in response to the
of HIV positive women.
need for a collective voice for PLHIV in the region, to better link regional PLHIV with the Global Network
As the world witnesses a sharp increase in the number of women living with HIV, women leaders like of PLHIV (GNP+) and positive networks throughout the world, and to support regional responses to
those telling their stories in this publication need to be heard. Coming from different socio-economic widespread stigma and discrimination and better access to treatment and care.
and personal contexts in the Asia Pacifc region, these women speak of the power dynamic in their
relationship with men, weighted in favour of the latter. They speak of discrimination and violence that Women of APN+ (WAPN+) was formed in 2006 as one of the working groups of APN+. Its vision is
they endure, rendering them vulnerable to HIV – a lack of information about HIV, a lack of knowledge the empowerment of women living with HIV in Asia and the Pacifc. Women who share their life stories
about a partner’s HIV status, an inability to negotiate sex or safe sex, because they fear violence. in this book are good examples of our vision being realized. They have become leaders despite severe
They speak about the stigma and discrimination they face and the burden of secrecy that weighs down discrimination and stigma, and are inspiring and empowering other women. Above all, these eleven
on them (and women do face disproportionate discrimination when compared to men), unaffordable women in the book are great advocates of people living with HIV rights and voices, whose stories are
healthcare services and the burden of care-giving responsibilities. sometimes not being told. Through these stories, we are being reminded that the numbers indicated
in the HIV data represent people who have different life stories, stories of hopes, dreams, love, passion
Emerging from the shock of testing HIV positive and the implications this has for their lives and relationships, and life experiences to share with all of us.
transcending the trauma of stigma and discrimination - these women demonstrate remarkable courage
in breaking the culture of silence enveloping their HIV status. They show intense resilience in picking I would like to thank all the women who contributed their time and effort by telling their stories as well as
up the pieces of their lives and deciding to LIVE, and in inspiring other HIV positive women with similar UNIFEM for their support. I would also like to express my sincere appreciation and deep admiration to
concerns, to LIVE. They are crucial advocates for the rights of women, and in particular the rights of HIV Dr. Susan Paxton, author of this book, respected researcher, wonderful trainer, and above all, good friend
positive women. It is critical that we help them robustly inform the formulation and effective implementation of ours for her extraordinary work.
of policies and programs with budgets, that address gender and HIV/AIDS issues in relation to prevention,
treatment and care. I hope as the title represents, our “Diamonds”, which are formed under immense pressure to become
the strongest and most brilliant natural resource on earth, are beautiful and colourful, and will keep on
Through the personal narratives of these amazingly strong women, Diamonds foregrounds the link sparkling, shining and inspiring many people, including other women living with HIV.
between gender-based discrimination, violence and HIV/AIDS. It is a frightening reminder that unless
inequitous power equations, whether between men and women, adults and children, or in same sex
relations, are transformed into equal relationships marked by respect and dignity, the pandemic,
especially its “feminine face”, will continue unabated.
Foreword Foreword
Dr. Jean D’Cunha Regional Program Director Co-chair Naoko Kawana
UNIFEM East & Southeast Asia Asia Pacifc Network of People Living
Regional Offce, Bangkok. with HIV/AIDS (APN+)
“When I talked about the experiences I had gone through with my children, I could see that all It is my pleasure to let you know that “Diamonds” is published in the year of the
the mothers were crying. It really touched them…I thought, my story is powerful. I can use it to 15th anniversary of Asia Pacifc Network of People living with HIV (APN+).
change people’s attitudes”, says Maura, a HIV positive woman, whose story like the other women
APN+ is the network of people living with HIV (PLHIV) in Asia Pacifc region. It was established in 1994
featured in this publication, “Diamonds”, challenges us to LISTEN to the concerns and priorities
at a meeting in Kuala Lumpur by 42 PLHIV from eight countries. It was established in response to the
of HIV positive women.
need for a collective voice for PLHIV in the region, to better link regional PLHIV with the Global Network
As the world witnesses a sharp increase in the number of women living with HIV, women leaders like of PLHIV (GNP+) and positive networks throughout the world, and to support regional responses to
those telling their stories in this publication need to be heard. Coming from different socio-economic widespread stigma and discrimination and better access to treatment and care.
and personal contexts in the Asia Pacifc region, these women speak of the power dynamic in their
relationship with men, weighted in favour of the latter. They speak of discrimination and violence that Women of APN+ (WAPN+) was formed in 2006 as one of the working groups of APN+. Its vision is
they endure, rendering them vulnerable to HIV – a lack of information about HIV, a lack of knowledge the empowerment of women living with HIV in Asia and the Pacifc. Women who share their life stories
about a partner’s HIV status, an inability to negotiate sex or safe sex, because they fear violence. in this book are good examples of our vision being realized. They have become leaders despite severe
They speak about the stigma and discrimination they face and the burden of secrecy that weighs down discrimination and stigma, and are inspiring and empowering other women. Above all, these eleven
on them (and women do face disproportionate discrimination when compared to men), unaffordable women in the book are great advocates of people living with HIV rights and voices, whose stories are
healthcare services and the burden of care-giving responsibilities. sometimes not being told. Through these stories, we are being reminded that the numbers indicated
in the HIV data represent people who have different life stories, stories of hopes, dreams, love, passion
Emerging from the shock of testing HIV positive and the implications this has for their lives and relationships, and life experiences to share with all of us.
transcending the trauma of stigma and discrimination - these women demonstrate remarkable courage
in breaking the culture of silence enveloping their HIV status. They show intense resilience in picking I would like to thank all the women who contributed their time and effort by telling their stories as well as
up the pieces of their lives and deciding to LIVE, and in inspiring other HIV positive women with similar UNIFEM for their support. I would also like to express my sincere appreciation and deep admiration to
concerns, to LIVE. They are crucial advocates for the rights of women, and in particular the rights of HIV Dr. Susan Paxton, author of this book, respected researcher, wonderful trainer, and above all, good friend
positive women. It is critical that we help them robustly inform the formulation and effective implementation of ours for her extraordinary work.
of policies and programs with budgets, that address gender and HIV/AIDS issues in relation to prevention,
treatment and care. I hope as the title represents, our “Diamonds”, which are formed under immense pressure to become
the strongest and most brilliant natural resource on earth, are beautiful and colourful, and will keep on
Through the personal narratives of these amazingly strong women, Diamonds foregrounds the link sparkling, shining and inspiring many people, including other women living with HIV.
between gender-based discrimination, violence and HIV/AIDS. It is a frightening reminder that unless
inequitous power equations, whether between men and women, adults and children, or in same sex
relations, are transformed into equal relationships marked by respect and dignity, the pandemic,
especially its “feminine face”, will continue unabated.
CONTENTS
Maura, Papua New Guinea 12
Neri, Philippines 24
Princey, Sri Lanka 34
Frika, Indonesia 42
Pharozin, Cambodia 52
Saranya, India 60
Ratana, Thailand 68
Chengli, China 76
Rinarsi, India 84
Kiren, Malaysia 94
Huyen, Viet Nam 106
Author/Editor: Susan Paxton
Cover design by: Fenica Cia Iskandar
Photos: Mikael Enlund and story contributors
First Published: August 2009
Layout design by: Lotus Agency Asia Co., Ltd.
Copyright © 2009 Asia Pacifc Network of People Living with HIV and AIDS
Printed in Thailand
CONTENTS
Maura, Papua New Guinea 12
Neri, Philippines 24
Princey, Sri Lanka 34
Frika, Indonesia 42
Pharozin, Cambodia 52
Saranya, India 60
Ratana, Thailand 68
Chengli, China 76
Rinarsi, India 84
Kiren, Malaysia 94
Huyen, Viet Nam 106
Author/Editor: Susan Paxton
Cover design by: Fenica Cia Iskandar
Photos: Mikael Enlund and story contributors
First Published: August 2009
Layout design by: Lotus Agency Asia Co., Ltd.
Copyright © 2009 Asia Pacifc Network of People Living with HIV and AIDS
Printed in Thailand
INTRODUCTION
In 1997 I attended the International Congress on HIV/AIDS in Asia and the Pacifc (ICAAP) in Manila
and met many positive women who gave public talks, most under a pseudonym with the exception
of the sharp and dynamic Sarah Jane. At the next International Conference for People living with HIV
in Chiang Mai, still there was only a slow trickle of positive women who were “out” and open about their
HIV status in public.
Most women diagnosed with HIV tend to keep quiet about it. For many years I was terrifed to go public in
the media for fear that my son would face discrimination, but he didn’t. My PhD study of HIV-positive
speakers indicated that going public is paradoxically both terrifying and provides enormous relief.
I wrote “Lifting Burden of Secrecy” to help positive people who want to speak in public and I became
fascinated by the diverse life journeys of positive women who become activists.
In 2001 APN+ conducted the frst regional documentation of AIDS-related discrimination in Asia and we
found that within families and communities, women face more discrimination than men do. I became
increasingly committed to training positive people on how to advocate for their right to live free from
discrimination. For several years I worked with mixed groups of men and women and got to know positive
women from Bangladesh, Guam, India, Papua New Guinea and Singapore. I met both Frika and Maura,
two women who continually amaze me. Women in Thailand were already politically active and India was
This is a compilation of stories about the lives of women living with HIV in the Asia-Pacifc region.
building robust women’s networks, but in comparison to other parts of the world, female positive leaders
Each woman has overcome incredible challenges to become a strong leader, advocate and role model
in our region were quieter and slower to emerge. I decided it was time APN+ offered women-only training
for other HIV-positive women. These women are like diamonds, formed under immense pressure, hewn
workshops in advocacy and facilitation skills and the frst was held in Bali in May 2004. It was an exhilarating,
from the darkness to shine, strongest and most brilliant of all gems. Interviewing these women and
electric experience for us all.
crafting their stories has been one of the most joyous tasks I could have undertaken. I know each woman
to some extent because they have all attended at least one of the training workshops I have conducted in
Women began mobilising in many countries. I worked with positive women from Cambodia, China, Fiji,
the region and several have become my close friends. I have witnessed many of these women blossom
Indonesia, Iran, Japan, Malaysia, Mongolia, Myanmar, Lao PDR, Nepal, Pakistan, Samoa, Sri Lanka
over the last few years and I wanted to document their life stories to challenge discriminatory attitudes
and Viet Nam. I felt proud to see women who were participants in one of my training of trainer courses
towards HIV-positive people and to inspire more women living with HIV to speak out. Thank you to
conducting meetings, running sessions, facilitating networks and managing organisations. Today we have
UNIFEM for enabling me to bring these diamonds into the light.
a groundswell of inspirational positive women leaders throughout the region who are passing on their
skills and helping to build the confdence of more positive women and their stories need to be told.
When I started talking to health professionals and students about living with HIV in 1991, I realised how
powerful my story was, and I was amazed there were not more positive people speaking out publicly.
There are so many strong positive women who could have been included in this book; a volume could be
Early in 1995 I attended the International Conference for People Living with HIV in Cape Town and was
written focussing solely on women in the Pacifc or women in India. APN+ received funding for travel only
appalled by the absence of HIV-positive women from our region. I spoke to all the Asian males there and
in South-East Asia and I was fortunate to have the opportunity to capture a few additional stories from
was told that positive women were speaking out in Asia, particularly in the Philippines, although none had
women outside this sub-region.
made it as far as the conference. Soon after this I met Suzana Murni, who went on to establish Spiritia,
the frst network for people affected by HIV in Indonesia, and Oom, a tiny courageous Thai woman who
advocated for HIV-positive women’s rights to reproductive choices and who set up a home for babies of
positive women in Bangkok. When I was elected the Australian representative to the Asia-Pacifc
Network of People Living with HIV (APN+) in 1996, there was a dearth of positive women leaders
in our region.
8 9
INTRODUCTION
In 1997 I attended the International Congress on HIV/AIDS in Asia and the Pacifc (ICAAP) in Manila
and met many positive women who gave public talks, most under a pseudonym with the exception
of the sharp and dynamic Sarah Jane. At the next International Conference for People living with HIV
in Chiang Mai, still there was only a slow trickle of positive women who were “out” and open about their
HIV status in public.
Most women diagnosed with HIV tend to keep quiet about it. For many years I was terrifed to go public in
the media for fear that my son would face discrimination, but he didn’t. My PhD study of HIV-positive
speakers indicated that going public is paradoxically both terrifying and provides enormous relief.
I wrote “Lifting Burden of Secrecy” to help positive people who want to speak in public and I became
fascinated by the diverse life journeys of positive women who become activists.
In 2001 APN+ conducted the frst regional documentation of AIDS-related discrimination in Asia and we
found that within families and communities, women face more discrimination than men do. I became
increasingly committed to training positive people on how to advocate for their right to live free from
discrimination. For several years I worked with mixed groups of men and women and got to know positive
women from Bangladesh, Guam, India, Papua New Guinea and Singapore. I met both Frika and Maura,
two women who continually amaze me. Women in Thailand were already politically active and India was
This is a compilation of stories about the lives of women living with HIV in the Asia-Pacifc region.
building robust women’s networks, but in comparison to other parts of the world, female positive leaders
Each woman has overcome incredible challenges to become a strong leader, advocate and role model
in our region were quieter and slower to emerge. I decided it was time APN+ offered women-only training
for other HIV-positive women. These women are like diamonds, formed under immense pressure, hewn
workshops in advocacy and facilitation skills and the frst was held in Bali in May 2004. It was an exhilarating,
from the darkness to shine, strongest and most brilliant of all gems. Interviewing these women and
electric experience for us all.
crafting their stories has been one of the most joyous tasks I could have undertaken. I know each woman
to some extent because they have all attended at least one of the training workshops I have conducted in
Women began mobilising in many countries. I worked with positive women from Cambodia, China, Fiji,
the region and several have become my close friends. I have witnessed many of these women blossom
Indonesia, Iran, Japan, Malaysia, Mongolia, Myanmar, Lao PDR, Nepal, Pakistan, Samoa, Sri Lanka
over the last few years and I wanted to document their life stories to challenge discriminatory attitudes
and Viet Nam. I felt proud to see women who were participants in one of my training of trainer courses
towards HIV-positive people and to inspire more women living with HIV to speak out. Thank you to
conducting meetings, running sessions, facilitating networks and managing organisations. Today we have
UNIFEM for enabling me to bring these diamonds into the light.
a groundswell of inspirational positive women leaders throughout the region who are passing on their
skills and helping to build the confdence of more positive women and their stories need to be told.
When I started talking to health professionals and students about living with HIV in 1991, I realised how
powerful my story was, and I was amazed there were not more positive people speaking out publicly.
There are so many strong positive women who could have been included in this book; a volume could be
Early in 1995 I attended the International Conference for People Living with HIV in Cape Town and was
written focussing solely on women in the Pacifc or women in India. APN+ received funding for travel only
appalled by the absence of HIV-positive women from our region. I spoke to all the Asian males there and
in South-East Asia and I was fortunate to have the opportunity to capture a few additional stories from
was told that positive women were speaking out in Asia, particularly in the Philippines, although none had
women outside this sub-region.
made it as far as the conference. Soon after this I met Suzana Murni, who went on to establish Spiritia,
the frst network for people affected by HIV in Indonesia, and Oom, a tiny courageous Thai woman who
advocated for HIV-positive women’s rights to reproductive choices and who set up a home for babies of
positive women in Bangkok. When I was elected the Australian representative to the Asia-Pacifc
Network of People Living with HIV (APN+) in 1996, there was a dearth of positive women leaders
in our region.
8 9