If I kept it to myself - World YWCA
If I kept it to myself - World YWCA
If I kept it to myself - World YWCA
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<strong>If</strong><br />
I<br />
<strong>kept</strong><br />
<strong>it</strong><br />
<strong>to</strong><br />
young women intervene<br />
in a world w<strong>it</strong>h AIDS<br />
<strong>myself</strong>
Acknowledgements: We wish <strong>to</strong> thank UNAIDS for supporting this publication as well as all the<br />
inspirational young women, w<strong>it</strong>hout whom this book would not have been possible. This book was<br />
compiled and documented by Kanjoo Mbaindjikua, w<strong>it</strong>h the support of Lourdes Saad Olivera and<br />
Kaburo Kobia. It was ed<strong>it</strong>ed by Michelle Beg and Sophie Dilm<strong>it</strong>is and designed by Barbara Robra.<br />
Copyright: <strong>World</strong> <strong>YWCA</strong>, 2006
<strong>If</strong><br />
I<br />
<strong>kept</strong><br />
<strong>it</strong><br />
<strong>to</strong><br />
young women intervene<br />
in a world w<strong>it</strong>h AIDS<br />
<strong>myself</strong>
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Contents<br />
3 Foreword: Dr. Musimbi Kanyoro, General Secretary, <strong>World</strong> <strong>YWCA</strong><br />
4 Introduction: Kanjoo Mbaindjikua, Project Coordina<strong>to</strong>r<br />
5 Glossary of Terms<br />
7 Good practices in Action:<br />
7 Advocacy<br />
8 • Gracia Violeta Ross Quiroga - Bolivia<br />
12 • Pen Moni - Cambodia<br />
15 • Lydia Rwechungura - Tanzania<br />
17 • Sybil Olivera - Argentina<br />
20 • Frika Chia Iskandar - Indonesia<br />
23 Tool Box: Speak Out<br />
24 Tool Box: Fund-raising<br />
25 Education<br />
26 • Vidah Bossa - Uganda<br />
28 • Tuwilika He<strong>it</strong>a - Namibia<br />
31 • Alejandra Bus<strong>to</strong>s - Chile<br />
33 • Nakibuule Sylvia- Uganda<br />
37 • Nastassia Ladzik - Belarus<br />
39 • Mphatso Tambala - Malawi<br />
42 Tool Box: Share Knowledge<br />
45 Care and Support<br />
46 • Constance Shumba - Zimbabwe<br />
49 • Florence Masuliya - Uganda<br />
51 • Phumzile Ndlovu - South Africa<br />
55 • Agnes Njeri Wanjiku - Kenya<br />
57 • Mwelwa Chibuye - Zambia<br />
59 Tool Box: Give a Helping Hand<br />
61 Media and Communications<br />
62 • Princess Kasune Zulu - Zambia<br />
64 • Belinda Ngwadzai - Zimbabwe<br />
67 • Joya Banerjee - USA<br />
71 • Felic<strong>it</strong>a Hikuam - Namibia<br />
74 • Sophie Dilm<strong>it</strong>is - Zimbabwe<br />
77 Tool Box: Attract Attention<br />
79 Pioneers<br />
80 • Asunta Wagura - Kenya<br />
82 • Fikile Dlamini - Swaziland<br />
85 • Trinh Thi Thuy Ngan - Vietnam<br />
88 • Promise Mthembu - South Africa<br />
91 • Emma Tuahepa-Kamapoha - Namibia<br />
95 Tool Box: Start An Organisation<br />
96 Young Women intervene in a world w<strong>it</strong>h AIDS<br />
2
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Foreword<br />
Dr. Musimbi Kanyoro, General Secretary, <strong>World</strong> <strong>YWCA</strong><br />
The Reverend Martin Luther King, Junior once wrote that ‘THE ULTIMATE MEASURE OF HUMANITY<br />
IS NOT WHERE IT STANDS IN THE TIME OF COMFORT BUT WHERE IT STANDS IN THE TIME<br />
OF CHALLENGE, CRISIS AND TRAGEDY’.<br />
Humankind has failed <strong>to</strong> adequately address the gross social and gender inequ<strong>it</strong>ies that continue <strong>to</strong><br />
divide us. It is in times like these that not only our kindness and compassion are on trial but our basic<br />
viabil<strong>it</strong>y as a species.<br />
Desp<strong>it</strong>e hardship and challenges, women around the globe are at the forefront of interventions and are<br />
changing the course of the HIV and AIDS pandemic through hard work and unwavering comm<strong>it</strong>ment.<br />
Driven by their strength, some young women living w<strong>it</strong>h HIV have dedicated their lives <strong>to</strong> improving the<br />
status of people living w<strong>it</strong>h HIV and AIDS in their commun<strong>it</strong>ies and countries.<br />
All <strong>YWCA</strong> programmes empower women and girls. Being independent and having a voice enables<br />
them <strong>to</strong> take responsibil<strong>it</strong>y for their own lives and <strong>to</strong> provide leadership in response <strong>to</strong> HIV and AIDS.<br />
The current statistics on the HIV pandemic and the fact that women, especially young women and<br />
girls, are disproportionately affected by poverty and HIV and AIDS, were a wake-up call for the <strong>YWCA</strong>.<br />
Since the early 1990s HIV and AIDS have been a prior<strong>it</strong>y in many <strong>YWCA</strong>s. W<strong>it</strong>h sexual and<br />
reproductive health and HIV and AIDS programmes now operating in over 60 countries, health<br />
programmes and commun<strong>it</strong>y education strategies have been adapted <strong>to</strong> bring HIV and AIDS <strong>to</strong> the<br />
forefront of <strong>YWCA</strong> advocacy work at all levels. The <strong>World</strong> <strong>YWCA</strong> Global Strategy on HIV and AIDS<br />
provides the framework for these activ<strong>it</strong>ies.<br />
Our overall goal of educating women and girls around the world on HIV prevention methods and<br />
offering skills and <strong>to</strong>ols <strong>to</strong> women already infected w<strong>it</strong>h HIV promote their lives <strong>to</strong> be healthier, longer<br />
and more productive. The <strong>YWCA</strong> believes that by providing safe places for open discussion around<br />
sex and sexual<strong>it</strong>y, we contribute <strong>to</strong>wards women in particular and people in general <strong>to</strong> regard HIV<br />
as a virus that we are all learning <strong>to</strong> live w<strong>it</strong>h, rather than seeing <strong>it</strong> as a punishment based on moral<br />
judgements.<br />
Much has been done but there is still a long way <strong>to</strong> go. Our focus must therefore remain unshakable,<br />
and <strong>it</strong> is thanks <strong>to</strong> the relentless efforts of women such as the ones in this book, that the candle of<br />
hope continues <strong>to</strong> burn.<br />
Through this publication, the <strong>World</strong> <strong>YWCA</strong> and <strong>it</strong>s partners highlight and honour these women leaders<br />
of the world. Whether they are care-givers, heads of households, peer supporters, educa<strong>to</strong>rs, founders<br />
of organisations or ambassadors of hope, they have done all of this w<strong>it</strong>hout asking for any reward<br />
and most of them in the face of great advers<strong>it</strong>y. Through hard work they are making changes and<br />
alleviating the pain of women and girls infected and affected by HIV and AIDS and their commun<strong>it</strong>ies<br />
across the globe.<br />
The <strong>World</strong> <strong>YWCA</strong> is a founding member of the Global Coal<strong>it</strong>ion on Women and AIDS. As a member<br />
of the Leadership Council of the Global Coal<strong>it</strong>ion on Women and AIDS, I wish <strong>to</strong> acknowledge their<br />
support in publishing this book.<br />
3
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Introduction<br />
Kanjoo Mbaindjikua, Project Coordina<strong>to</strong>r<br />
Statistics clearly show that young women and girls are highly affected by the AIDS pandemic. While<br />
the s<strong>it</strong>uation is serious, young women are by no means idly hoping for better days. At the <strong>YWCA</strong>,<br />
we are seeing another type of response. This response is unique and challenging, and gives the<br />
word courage a new, humbling meaning as we see young women treading upon grounds that many<br />
only dream or dare talk about. Young women are the drivers and implementers of policies and<br />
programmes, which are reaching out and <strong>to</strong>uching lives and commun<strong>it</strong>ies.<br />
The <strong>World</strong> <strong>YWCA</strong> has documented these inspiring s<strong>to</strong>ries <strong>to</strong> highlight how young women are working<br />
<strong>to</strong> alleviate the suffering caused by HIV and AIDS. However, this is not just s<strong>to</strong>ry telling but a <strong>to</strong>ol for<br />
empowerment. We want other young people, and the not so young, <strong>to</strong> benef<strong>it</strong> from lessons learnt by<br />
these courageous young activists. Whatever your background, age and social environment, you will be<br />
inspired <strong>to</strong> take action.<br />
In the pages that follow, you will meet young women from all over the world, who have shaken their<br />
commun<strong>it</strong>ies as peer counsellors and educa<strong>to</strong>rs, as care givers, and as people living openly w<strong>it</strong>h<br />
HIV and AIDS; giving hope <strong>to</strong> many and promoting a humanistic response <strong>to</strong> the pandemic. Other<br />
young women are simply using their professional skills <strong>to</strong> create <strong>to</strong>ols and platforms for dialogue and<br />
empowerment.<br />
From Bolivia <strong>to</strong> Zambia, “<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong>” is inspired by the work that has been documented in<br />
this book. “It is our task <strong>to</strong> seek safety for our children not in quiet denial but in effective action. We<br />
must break this silence now <strong>to</strong> save our children, our nation and the world at large,” <strong>to</strong> quote Asunta<br />
Wagura, one of the pioneers recognised in this book. <strong>If</strong> these women remained silent and did nothing,<br />
many of us would not be here <strong>to</strong>day. We would not be inspired <strong>to</strong> take action or adm<strong>it</strong> that HIV and<br />
AIDS is something we can talk about and do something about.<br />
W<strong>it</strong>h our focus on young women, we are not seeking <strong>to</strong> lim<strong>it</strong> leadership only <strong>to</strong> the young but rather<br />
<strong>to</strong> document the different ways in which leadership is being provided by those who are most affected.<br />
From our experiences as one of the oldest and largest women’s organisations in the world, we are<br />
bringing a non-trad<strong>it</strong>ional profile of leadership that comes from the heart of the commun<strong>it</strong>y and takes<br />
many forms.<br />
In this book, leadership can be found in small gestures such as approaching national leaders <strong>to</strong> join<br />
activ<strong>it</strong>ies <strong>to</strong> recognise HIV and AIDS work in commun<strong>it</strong>ies and <strong>to</strong> destigmatise the disease. It can also<br />
be found in caring for a loved one, reun<strong>it</strong>ing estranged families and burying friends who die of AIDS<br />
w<strong>it</strong>h dign<strong>it</strong>y and respect. Leadership is also about spreading messages of prevention, care, support<br />
and respect for the rights of people living w<strong>it</strong>h HIV and AIDS, as well as women and children. The list<br />
is endless but the goal is one: <strong>to</strong> alleviate the suffering and bring an end <strong>to</strong> the shame and guilt that<br />
comes w<strong>it</strong>h living w<strong>it</strong>h HIV and AIDS.<br />
The s<strong>to</strong>ries are clustered according <strong>to</strong> themes, which are followed by <strong>to</strong>ol boxes on what each one of<br />
us can do <strong>to</strong> bring about change in our own commun<strong>it</strong>y. We encourage you <strong>to</strong> share this publication<br />
w<strong>it</strong>h your colleagues, your family and your friends. Let <strong>it</strong> be a book that you can read <strong>to</strong> your children<br />
<strong>to</strong> start a discussion and be a reference on how <strong>to</strong> engage in HIV and AIDS activ<strong>it</strong>ies. “<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong><br />
<strong>myself</strong>» is an important his<strong>to</strong>ry of the courageous steps and hard work of young women intervening in<br />
a world w<strong>it</strong>h HIV and AIDS. It should motivate us all <strong>to</strong> action.<br />
4
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Glossary of Terms<br />
ACT<br />
AIDS Care Trust<br />
ALU<br />
AIDS Law Un<strong>it</strong><br />
AMAG African Microbicides Advocacy Group<br />
AFFESS-OVC African Extended Family Support for Orphans and Vulnerable Children<br />
AIDS Acquired Immune Deficiency Syndrome<br />
APN+ Asia Pacific Network of People Living w<strong>it</strong>h HIV and AIDS<br />
ARV<br />
Anti-Retroviral Treatment<br />
AYINET Africa Youth In<strong>it</strong>iative Network<br />
CCM Global Fund Country Coordinating Mechanism<br />
CCN<br />
Council of Churches in Namibia<br />
CBOs Commun<strong>it</strong>y Based Organisations<br />
CCM Global Fund Country Coordinating Mechanism, Malawi.<br />
CD4 Count a measure of immune system status<br />
CGJ<br />
Columbia Global Justice<br />
CPN+ Cambodian People Living w<strong>it</strong>h HIV and AIDS Network<br />
CRP<br />
Commun<strong>it</strong>y Review Panel for the Collaborative Fund<br />
CSWs Commercial Sex Workers<br />
DART Development of Anti-Retroviral Therapy<br />
GCWA Global Coal<strong>it</strong>ion on Women and AIDS<br />
GIPA Greater Involvement of People living w<strong>it</strong>h HIV and AIDS<br />
GNP+ Global Network of People living w<strong>it</strong>h HIV and AIDS<br />
GYCA Global Youth Coal<strong>it</strong>ion on HIV and AIDS<br />
GYP<br />
Global Youth Partners In<strong>it</strong>iative<br />
HBC<br />
Home Based Care<br />
HIPCs The world’s 50 Heavily Indebted Poor Countries<br />
HIV<br />
Human Immunodeficiency Virus<br />
HIVAN HIV and AIDS Networking<br />
ICW<br />
International Commun<strong>it</strong>y of Women living w<strong>it</strong>h HIV and AIDS<br />
IFRC International Federation of Red Cross and Red Crescent Societies<br />
INE<br />
Inst<strong>it</strong>u<strong>to</strong> Nacional de Estadisticas<br />
IVF<br />
International Video Fair<br />
IYP<br />
International Youth Parliament<br />
KANHNHA Kandal Provincial Plha Network<br />
KENWA Kenya Network of Women W<strong>it</strong>h Aids<br />
MANASO Malawi Network of AIDS Service Organisations<br />
MANET+ Malawi Network of People living w<strong>it</strong>h HIV and AIDS<br />
MDGs UN Millennium Development Goals<br />
MFMC My Future Is My Choice<br />
MHAPI M<strong>to</strong>jane HIV and AIDS Prevention In<strong>it</strong>iative<br />
MTCT Mother <strong>to</strong> Child Transmission<br />
NAEC National AIDS Executive Comm<strong>it</strong>tee<br />
NAMACOC Namibia Multi-Sec<strong>to</strong>ral HIV and AIDS Coordinating Comm<strong>it</strong>tee<br />
NANASO Namibia Network of AIDS Service Organisations<br />
NANSO Namibia National Students’ Organisation<br />
NAPWA National Association of People living w<strong>it</strong>h HIV and AIDS<br />
NGO Non governmental Organisation<br />
5
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
NYP+<br />
NZP+<br />
OIs<br />
OIYP<br />
OVC<br />
OXFAM<br />
PEPFAR<br />
PITA<br />
PLWHA<br />
PMTCT<br />
PWAD<br />
PWH<br />
PWHO<br />
RAC<br />
REDBOL<br />
REDLA<br />
REPSSI<br />
SASO<br />
SRR<br />
STI<br />
TAC<br />
TASC<br />
TASO<br />
TB<br />
UNAIDS<br />
UNFPA<br />
UNICEF<br />
UNIFEM<br />
UYP<br />
VCT<br />
WCC<br />
WHO<br />
YPLA<br />
YWD<br />
ZNPP+<br />
Network of Young People living w<strong>it</strong>h HIV and AIDS<br />
Network of Zambian People living w<strong>it</strong>h HIV and AIDS<br />
Opportunistic Infections<br />
Oxfam International Youth Parliament<br />
Orphans and Vulnerable Children Care Programme<br />
Oxford Comm<strong>it</strong>tee for Famine Relief<br />
The President’s Emergency Plan for AIDS Relief<br />
Support group for parents who have HIV pos<strong>it</strong>ive children<br />
People Living W<strong>it</strong>h HIV and AIDS<br />
Prevention of Mother <strong>to</strong> Child Transmission<br />
Pos<strong>it</strong>ive Women in Action and Development<br />
Parliamentary leadership for Women’s Health<br />
Pos<strong>it</strong>ive Women of Hope Organisation<br />
Regional Advisory Comm<strong>it</strong>tee on Access <strong>to</strong> Treatment<br />
Bolivian Network of PLWHA<br />
Latin-American Network of PLWHA<br />
Regional Psychological Support In<strong>it</strong>iative<br />
Swaziland AIDS Support Organisation<br />
Sexual and reproductive rights<br />
Sexually Transm<strong>it</strong>ted Infections<br />
Treatment Action Campaign<br />
The AIDS Information Support Centre<br />
The AIDS Support Organisation<br />
Tuberculosis<br />
Joint Un<strong>it</strong>ed Nations Programme on HIV and AIDS<br />
Un<strong>it</strong>ed Nations Fund for Population Activ<strong>it</strong>ies<br />
Un<strong>it</strong>ed Nations Children’s Fund<br />
Un<strong>it</strong>ed Nations Development Fund for Women<br />
Uganda Youth Pos<strong>it</strong>ives<br />
Voluntary Counselling and Testing<br />
<strong>World</strong> Council of Churches<br />
<strong>World</strong> Health Organisation<br />
Young Pos<strong>it</strong>ive Living Ambassadors<br />
Young Women’s Dialogue<br />
Zimbabwe Network for People Living w<strong>it</strong>h HIV and AIDS<br />
6
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Advocacy<br />
7
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Gracia Violeta Ross Quiroga<br />
God had prepared a loving church that supported<br />
my family and me from the moment they knew<br />
about my HIV status.<br />
I am Gracia Violeta Ross Quiroga, a 28-year-old<br />
woman from Bolivia living w<strong>it</strong>h HIV. I was born<br />
in<strong>to</strong> a protestant family. My father is a spir<strong>it</strong>ual<br />
leader; both my father and mother have founded<br />
churches in Bolivia.<br />
I went <strong>to</strong> church every Sunday but my heart<br />
was far from God. While at univers<strong>it</strong>y, I began <strong>to</strong><br />
drink alcohol and hung out w<strong>it</strong>h people who used<br />
<strong>to</strong> smoke marijuana and take drugs. My family<br />
suffered a lot during this time because they were<br />
worried about the people I had made friends w<strong>it</strong>h;<br />
they felt that they were a bad influence on me.<br />
They could not understand how I was able <strong>to</strong><br />
make poor decisions <strong>to</strong> go out w<strong>it</strong>h these people.<br />
This was not how they had brought me up.<br />
In church, and from my family, I learned that I had<br />
<strong>to</strong> remain a virgin until I got married. My parents<br />
wanted me <strong>to</strong> marry someone from the church,<br />
but I chose <strong>to</strong> date boys outside of the church<br />
and started having sex w<strong>it</strong>h them. I knew about<br />
the severe risks of becoming pregnant outside<br />
of marriage and I knew what shame this would<br />
bring my father, especially since he was such a<br />
prestigious leader w<strong>it</strong>hin the church. No one in<br />
the church spoke <strong>to</strong> me about sex or sexual<strong>it</strong>y<br />
and all the problems that these issues raised. I<br />
had <strong>to</strong> find information on my own.<br />
At that time I did not realise how much at risk I<br />
was of actually contracting HIV. I do not know<br />
how long I could have <strong>kept</strong> living this kind of life.<br />
I did not care about anything, ne<strong>it</strong>her my parents’<br />
suffering nor my family’s credibil<strong>it</strong>y w<strong>it</strong>hin the<br />
church. I just wanted <strong>to</strong> do as I pleased.<br />
8<br />
My sister would help me sneak out of the house<br />
<strong>to</strong> go drinking. One night I got home late but she
Young women intervene in a world w<strong>it</strong>h AIDS<br />
had not been home <strong>to</strong> read the note asking her <strong>to</strong><br />
open up for me at 2:30 am. I decided <strong>to</strong> look for<br />
her in a pub she used <strong>to</strong> hang out in. I was really<br />
drunk and did not realise that two men were<br />
following me. They attacked me and dragged me<br />
<strong>to</strong> an alleyway where they both raped me. I was<br />
eighteen years old.<br />
I could not believe this was happening <strong>to</strong> me, I<br />
was so close <strong>to</strong> home. I felt my heart was being<br />
destroyed. I was a child of God; I thought that he<br />
had a duty <strong>to</strong> protect me. I <strong>to</strong>ld my older sister<br />
what had happened but didn’t tell my parents. I<br />
did not want <strong>to</strong> see them suffer. I was traumatised<br />
for a long time. I would not let any man near me.<br />
Even though I had experienced great pain w<strong>it</strong>h<br />
this assault, <strong>it</strong> did not change my lifestyle. I used<br />
<strong>to</strong> think that nothing worse could happen now, so<br />
why should I care, I had already ruined my life.<br />
It was in March 2000, when I had an infection<br />
that would not heal, that I went <strong>to</strong> hosp<strong>it</strong>al for<br />
tests. I was tested for many different illnesses<br />
including HIV. When the HIV test came back HIV<br />
pos<strong>it</strong>ive, I could not believe <strong>it</strong>. I had not had more<br />
sexual partners than most of my school friends.<br />
I was simply a girl from univers<strong>it</strong>y discovering<br />
her sexual<strong>it</strong>y. I never injected drugs and I was<br />
not a sex worker. My first thought was how <strong>to</strong> tell<br />
my parents. What was going <strong>to</strong> happen <strong>to</strong> me?<br />
When was I going <strong>to</strong> die? How could I face the<br />
people and their prejudices about AIDS? How<br />
could I ever tell people from church that I was<br />
HIV pos<strong>it</strong>ive?<br />
I decided <strong>to</strong> tell my parents even though I thought<br />
that they would throw me out of the house. I<br />
wrote them a letter and sent <strong>it</strong> w<strong>it</strong>h my sister<br />
while I was staying at a friend’s house. <strong>If</strong> my<br />
parents rejected me, life would not be worth<br />
living. I went <strong>to</strong> see them afterwards. I will never<br />
forget their tear stained faces. They had one<br />
question wr<strong>it</strong>ten all over their faces: why did this<br />
happen <strong>to</strong> our child?<br />
My family did not reject me but received me w<strong>it</strong>h<br />
open arms, and <strong>to</strong>ld me they did not want <strong>to</strong> know<br />
what happened, they just wanted <strong>to</strong> be w<strong>it</strong>h me<br />
and support me until the last day. This love was<br />
just one of the gifts God has prepared for me.<br />
In 2000 there were hardly any campaigns<br />
in Bolivia on HIV prevention. The major<strong>it</strong>y<br />
of the population did not know the means of<br />
transmission of HIV, nor basic ways of preventing<br />
infection. Because of this lack of knowledge<br />
and information, they stigmatised people living<br />
w<strong>it</strong>h HIV and AIDS. I realised that if I were <strong>to</strong><br />
survive in Bolivia, I would need <strong>to</strong> fight against<br />
the stigma and discrimination. To do this, <strong>it</strong> was<br />
necessary <strong>to</strong> become a leader. I decided <strong>to</strong><br />
speak openly about my experience of living w<strong>it</strong>h<br />
HIV and as a survivor of sexual violence so as<br />
<strong>to</strong> make the population see that people living<br />
w<strong>it</strong>h HIV and AIDS (PLWHA) are the same as<br />
everybody else. All my work since 2000 has been<br />
in a volunteering capac<strong>it</strong>y. I began my campaign<br />
close <strong>to</strong> home - at my church.<br />
My family and I decided <strong>to</strong> tell the church about<br />
my HIV status. We were frightened of being<br />
expelled. We prayed a lot but I must confess,<br />
we did not trust God. We chose one Sunday<br />
<strong>to</strong> tell the church. From the moment I s<strong>to</strong>od up<br />
<strong>to</strong> speak, I could not s<strong>to</strong>p the tears. I was so<br />
remorseful for causing pain, for being a bad<br />
testimony for my church, for the shame I brought<br />
<strong>to</strong> my whole family.<br />
9
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
God had prepared a loving church that supported<br />
my family and me from the moment they knew<br />
about my HIV status. My dear brothers and<br />
sisters pray for me every week, asking God that<br />
I finally be healed. They support me during my<br />
trips <strong>to</strong> workshops and lectures by praying and<br />
sustaining my family w<strong>it</strong>h words of hope. This<br />
church that I love is a gift from God.<br />
In September 2002, I was inv<strong>it</strong>ed <strong>to</strong> a conference<br />
on HIV and AIDS in Chiang Mai, Thailand. There<br />
I met Leah Mutala, an African woman working as<br />
a volunteer taking care of children orphaned by<br />
AIDS. She taught me that God takes care of the<br />
widowed and orphaned.<br />
Together w<strong>it</strong>h our male counterparts, we began<br />
the Bolivian network of PLWHA (REDBOL) in<br />
2002. I am also a member of the International<br />
Commun<strong>it</strong>y of Women living w<strong>it</strong>h HIV and AIDS<br />
(ICW) Bolivia. Since I completed my Bachelor’s<br />
degree, I have been wr<strong>it</strong>ing publications and<br />
giving lectures on gender issues and the plight of<br />
PLWHA. I also advocate and facil<strong>it</strong>ate workshops<br />
on HIV and AIDS as a consultant and researcher.<br />
The terrible injustices affecting PLWHA in my<br />
country, especially against women, encouraged<br />
me <strong>to</strong> get involved. The most important fight<br />
I have comm<strong>it</strong>ted <strong>to</strong> is universal access <strong>to</strong><br />
Antiretroviral treatment (ARV). Medication is<br />
not readily available in Bolivia. The other fight I<br />
started was for gender equal<strong>it</strong>y in HIV and AIDS<br />
leadership, particularly calling for the support and<br />
involvement of women living w<strong>it</strong>h HIV and AIDS<br />
in decisions that affect their lives.<br />
Through REDBOL, we brought a case <strong>to</strong> court<br />
against the Bolivian State in the Inter-American<br />
Court of Human Rights asking for ARVs for 52<br />
10<br />
PLWHA who signed a pet<strong>it</strong>ion. At the time, the<br />
Ministry of Health decided who would be involved<br />
w<strong>it</strong>h the distribution of ARVs. They did not have<br />
any PLWHA on their comm<strong>it</strong>tee, which led <strong>to</strong><br />
secrecy and bias in the selection of candidates.<br />
They now have four PLWHA on their comm<strong>it</strong>tee<br />
of 30. Since then many more PLWHA have joined<br />
the campaign for access <strong>to</strong> ARVs.<br />
I was inv<strong>it</strong>ed <strong>to</strong> give a speech at the closing<br />
ceremony of the 2004 International AIDS<br />
Conference in Bangkok. There, I had the<br />
opportun<strong>it</strong>y <strong>to</strong> challenge my fellow delegates; I<br />
said we would not relax until there is universal<br />
access <strong>to</strong> ARVs. I talked about the real<strong>it</strong>y in<br />
my country and the gender inequal<strong>it</strong>y that is<br />
fuelling the HIV pandemic. I stressed that we<br />
should address gender inequal<strong>it</strong>y and ensure the<br />
universal access <strong>to</strong> education for girls.<br />
In Latin America, the major<strong>it</strong>y of PLWHA are<br />
men who have sex w<strong>it</strong>h men. At the beginning<br />
of my campaign <strong>it</strong> was very difficult <strong>to</strong> break<br />
the barriers put up by men in power and <strong>to</strong><br />
demand a space for women. Some leaders were<br />
determined <strong>to</strong> put up obstacles <strong>to</strong> our attempts<br />
<strong>to</strong> include HIV pos<strong>it</strong>ive women in decision<br />
and policy making. W<strong>it</strong>h the help of important<br />
networks like ICW, we finally managed <strong>to</strong> get<br />
women involved at all levels. Today there are<br />
visible changes regarding PLWHA. There are<br />
more women involved in leadership and this<br />
makes a difference since women know best<br />
the needs of other women. This fight is for the<br />
inclusion of HIV pos<strong>it</strong>ive women, not only in<br />
the commun<strong>it</strong>y but also in government. Finding<br />
people who specialise in women and AIDS and<br />
in issues affecting HIV pos<strong>it</strong>ive women is our<br />
most difficult goal.
Young women intervene in a world w<strong>it</strong>h AIDS<br />
In 2004, I got financial support from HIVOS <strong>to</strong><br />
prepare the first meeting of ICW in Bolivia. It was<br />
a his<strong>to</strong>ric moment because women found strength<br />
when they came <strong>to</strong>gether. Up <strong>to</strong> that time, HIV<br />
pos<strong>it</strong>ive women were separated and afraid, and<br />
<strong>it</strong> was difficult for women <strong>to</strong> access financial<br />
resources. At that meeting I shared my vision for<br />
HIV pos<strong>it</strong>ive women’s leadership and encouraged<br />
others <strong>to</strong> do the same. I am not the only HIV<br />
pos<strong>it</strong>ive woman in this fight; many others around<br />
the world are fighting for the same objectives.<br />
In 2005, w<strong>it</strong>h friends from ICW, I got support from<br />
UNAIDS for a training project for HIV pos<strong>it</strong>ive<br />
women in Bolivia, Peru, Ecuador, Colombia and<br />
Venezuela. In counselling groups, we show the<br />
important role of the family in helping PLWHA <strong>to</strong><br />
react <strong>to</strong> an HIV pos<strong>it</strong>ive diagnosis.<br />
After receiving a HIV pos<strong>it</strong>ive diagnosis, I looked<br />
for God again. He gave me freedom from blame<br />
and shame. I found peace, forgiveness, hope and<br />
eternal life. The Lord had a mission for my life,<br />
desp<strong>it</strong>e my mistakes. I asked for forgiveness and I<br />
gave God what I still had of my broken life.<br />
Together w<strong>it</strong>h other colleagues, we set up a selfhelp<br />
group for PLWHA. We work as volunteers on<br />
prevention, advocacy, assistance for those who<br />
are ill, and information for families, commun<strong>it</strong>y<br />
based organisations and the government. The Pan<br />
American Health Organisation has referred <strong>to</strong> us<br />
as a “successful experience on HIV and AIDS”.<br />
I am now a public speaker on HIV and AIDS and,<br />
as a leader of REDBOL, I appear on television<br />
very often calling for the need for all women and<br />
girls <strong>to</strong> have access <strong>to</strong> the information and the<br />
means necessary <strong>to</strong> protect them from HIV and<br />
AIDS.<br />
ICW has delegated me <strong>to</strong> work w<strong>it</strong>h the <strong>World</strong><br />
Council of Churches (WCC) <strong>to</strong> promote the<br />
greater involvement of PLWHA (GIPA) in religious<br />
leadership and activ<strong>it</strong>ies. I have also been<br />
chosen by the Latin-American Network of PLWHA<br />
(REDLA) <strong>to</strong> represent civil society at meetings. I<br />
was inv<strong>it</strong>ed <strong>to</strong> participate in the Global Coal<strong>it</strong>ion<br />
of Women and AIDS (GCWA), a UNAIDS<br />
in<strong>it</strong>iative of which I am a founding member.<br />
I am in the process of men<strong>to</strong>ring another young<br />
woman <strong>to</strong> take over the leadership of ICW<br />
Bolivia. It is very difficult because in my country<br />
the needs are tremendous and women have <strong>to</strong><br />
maintain a paying job while doing advocacy. I<br />
believe that we should continue <strong>to</strong> advocate for<br />
ARVs and an end <strong>to</strong> discrimination and gender<br />
inequal<strong>it</strong>y.<br />
Born: 1977<br />
Country: Bolivia<br />
Organisations: REDBOL<br />
(Bolivian network of<br />
PLWHA); International<br />
Commun<strong>it</strong>y of Women<br />
Living w<strong>it</strong>h HIV and<br />
AIDS (ICW)<br />
Campaigns for:<br />
Universal access<br />
<strong>to</strong> ARV and gender<br />
equal<strong>it</strong>y<br />
11
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Pen Moni<br />
Being a young woman living w<strong>it</strong>h HIV, I have comm<strong>it</strong>ted<br />
<strong>to</strong> make things happen and improve the cond<strong>it</strong>ions of<br />
our lives, even if <strong>it</strong> takes a long time.<br />
I am the second child in a family of five children.<br />
My parents were poor farmers, and always<br />
fought. When I was seven years old, my dad <strong>to</strong>ok<br />
a new wife and would drink and h<strong>it</strong> my mother.<br />
Every day, I would wonder why he treated her so<br />
badly; my mother was a woman, not an animal!<br />
When I was nine, my father raped me and<br />
threatened <strong>to</strong> hurt me more, should I tell anyone.<br />
I never <strong>to</strong>ld my mum but tried <strong>to</strong> tell my brother,<br />
although he could not fully understand what I was<br />
saying as he has a disabil<strong>it</strong>y.<br />
In 2001, I married a good man who was working<br />
for the immigration department. We planned<br />
<strong>to</strong> have three children and bring up a family in<br />
a nice l<strong>it</strong>tle house in the countryside. In 2002,<br />
we both tested for HIV and the results were<br />
HIV pos<strong>it</strong>ive. We promised <strong>to</strong> take good care of<br />
ourselves, because we needed <strong>to</strong> do things for<br />
others who were infected and affected by HIV<br />
and AIDS, in particular women. I don’t want <strong>to</strong><br />
see the rest suffer because of HIV and AIDS. I<br />
know how <strong>it</strong> feels.<br />
12<br />
In 2000, I joined Oxfam Hong Kong and<br />
the Womyn’s Agenda for Change Project in<br />
Cambodia, as an assistant <strong>to</strong> the Sex Workers’<br />
Empowerment Programme. People believed sex<br />
workers <strong>to</strong> be bad, and not worthy of the dign<strong>it</strong>y<br />
of the rest of society. I knew that we should not<br />
stigmatise against this group. They are women<br />
and if we isolate them, they will remain vulnerable<br />
<strong>to</strong> HIV and AIDS and other issues.<br />
During that period, sex workers faced many<br />
problems including stigma, lack of power<br />
<strong>to</strong> negotiate condom use w<strong>it</strong>h clients and<br />
harassment, and their health status meant an<br />
end of income from brothel owners. Mostly, they
Young women intervene in a world w<strong>it</strong>h AIDS<br />
lacked information on HIV, AIDS and human<br />
rights. As a programme assistant, I supported the<br />
development of the Women’s Network for Un<strong>it</strong>y<br />
and I was responsible for building the capac<strong>it</strong>y<br />
of and men<strong>to</strong>ring the Network, facil<strong>it</strong>ating<br />
workshops in areas such as strategies for<br />
working w<strong>it</strong>h sex workers, leadership, negotiation,<br />
facil<strong>it</strong>ation, communication, information on HIV<br />
and AIDS and women’s empowerment. For<br />
three years, I worked w<strong>it</strong>h sex workers, gay men<br />
and lesbian women. I came <strong>to</strong> understand their<br />
s<strong>it</strong>uation well, earning their trust and enjoying my<br />
work w<strong>it</strong>h them.<br />
In my volunteer time, I am now a Consultative<br />
Board Member of the Pos<strong>it</strong>ive Women of<br />
Hope Organisation (PWHO), the first group<br />
in Cambodia <strong>to</strong> provide support by and for<br />
women living w<strong>it</strong>h HIV and AIDS in Cambodia.<br />
I joined this group because they can make<br />
a change and improve the qual<strong>it</strong>y of life of<br />
women, and address gender and HIV and<br />
AIDS issues. My responsibil<strong>it</strong>y w<strong>it</strong>h the PWHO<br />
is <strong>to</strong> seek appropriate funding for them and <strong>to</strong><br />
provide technical support for sustaining and<br />
strengthening the group. I spend my weekends<br />
working w<strong>it</strong>h PWHO. I am also on the Advisory<br />
Comm<strong>it</strong>tee of KANHNHA, a commun<strong>it</strong>y based<br />
organisation of men having sex w<strong>it</strong>h men. My<br />
role is the same as the one w<strong>it</strong>h PWHO. I usually<br />
attend their meetings once a month.<br />
My work as a HIV and AIDS Junior Programme<br />
Officer for the Policy Project is <strong>to</strong> work w<strong>it</strong>h<br />
the Technical Advisor and Senior Programme<br />
Officer <strong>to</strong> build the capac<strong>it</strong>y of organisations for<br />
PLWHA, including the Cambodian People Living<br />
w<strong>it</strong>h HIV and AIDS Network (CPN+) and V<strong>it</strong>hey<br />
Chiv<strong>it</strong> NGO in order <strong>to</strong> strengthen their networks<br />
and members on advocacy, public speaking and<br />
access <strong>to</strong> treatment.<br />
In Cambodia, <strong>it</strong> is estimated that one in 52<br />
people are infected w<strong>it</strong>h HIV yet the level of<br />
involvement of these people in HIV and AIDS<br />
policy-making processes is lim<strong>it</strong>ed. Moreover,<br />
they experience stigma and discrimination, lack<br />
access <strong>to</strong> information on treatment, education<br />
and services, and have low income generating<br />
activ<strong>it</strong>ies and high unemployment. In add<strong>it</strong>ion, the<br />
comm<strong>it</strong>ment from NGOs, donors and government<br />
<strong>to</strong> the greater involvement of PLWHA (GIPA) is<br />
low and access <strong>to</strong> medical treatment is lim<strong>it</strong>ed <strong>to</strong><br />
the provinces.<br />
Being a young woman living w<strong>it</strong>h HIV, I have<br />
comm<strong>it</strong>ted <strong>to</strong> make things happen and improve<br />
the cond<strong>it</strong>ions of our lives, even if <strong>it</strong> takes a<br />
13
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
long time. Currently, I am working <strong>to</strong> strengthen<br />
the capac<strong>it</strong>y of people living w<strong>it</strong>h HIV and AIDS<br />
<strong>to</strong> improve their lives and raise their voices in<br />
advocacy for their rights. In doing this, I am vocal<br />
in public, calling on government, the commun<strong>it</strong>y<br />
and different groups <strong>to</strong> join in response <strong>to</strong> the<br />
pandemic, and end stigma and discrimination<br />
against people living w<strong>it</strong>h HIV and AIDS.<br />
Currently I am also a member of the Commun<strong>it</strong>y<br />
Review Panel (CRP) for the Collaborative Fund<br />
and the Regional Advisory Comm<strong>it</strong>tee (RAC) on<br />
Access <strong>to</strong> Treatment, which is responsible for<br />
developing prior<strong>it</strong>ies and guidelines for funding<br />
across the regions.<br />
I am involved in many commun<strong>it</strong>y in<strong>it</strong>iatives and<br />
advocacy activ<strong>it</strong>ies at home. And since 2001, I<br />
also work as a consultant on trafficking, women<br />
and child development, gender and resources,<br />
condom use, the media and many other issues.<br />
I have <strong>to</strong>ld all my family including cousins, nieces,<br />
nephews, aunts and uncles about my HIV status<br />
and what I expect from them. They are supportive<br />
in my work and encourage me <strong>to</strong> remain healthy<br />
and continue w<strong>it</strong>h my comm<strong>it</strong>ment.<br />
I am working very hard <strong>to</strong> see the involvement<br />
of people living w<strong>it</strong>h HIV and AIDS. For the<br />
upcoming International AIDS Conference<br />
2006 in Toron<strong>to</strong>, Canada, I have subm<strong>it</strong>ted a<br />
proposal <strong>to</strong> the organising comm<strong>it</strong>tee <strong>to</strong> inv<strong>it</strong>e<br />
potential donors for a closed door meeting w<strong>it</strong>h<br />
representatives of PLWHA around the world. The<br />
main purpose is <strong>to</strong> explore their comm<strong>it</strong>ment <strong>to</strong><br />
GIPA.<br />
14<br />
Born: 1980<br />
Country: Cambodia<br />
Organisation:<br />
KANHNHA and<br />
Pos<strong>it</strong>ive Women of<br />
Hope Organisation<br />
Campaigns for:<br />
empowerment of sex<br />
workers and PLWHA;<br />
greater involvement<br />
of PLWHA
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Lydia Rwechungura<br />
Being young, we can make a difference and change the<br />
world. Life has <strong>to</strong> go on and we have <strong>to</strong> show <strong>it</strong>!<br />
I got married in 2000 and became pregnant<br />
in 2001. In the second month of pregnancy, I<br />
attended an unfriendly antenatal clinic and was<br />
not convinced <strong>to</strong> test for HIV. In 2002, I gave<br />
birth <strong>to</strong> my daughter and breastfed her. At that<br />
time, I was beginning <strong>to</strong> have AIDS symp<strong>to</strong>ms,<br />
especially on my skin. I asked my husband <strong>to</strong><br />
go for testing. He refused and we continued<br />
<strong>to</strong> have sex w<strong>it</strong>hout using protection. After a<br />
while, I <strong>to</strong>ld him that if he did not go w<strong>it</strong>h me for<br />
testing, I would s<strong>to</strong>p having sex w<strong>it</strong>h him. He<br />
finally accepted and, <strong>to</strong>gether w<strong>it</strong>h our child, we<br />
went for HIV testing. The following week, the<br />
counsellor informed us that my daughter and I<br />
tested HIV pos<strong>it</strong>ive, and my husband tested HIV<br />
negative. He was <strong>to</strong>ld <strong>to</strong> return for another test<br />
after three months.<br />
Since that day, my husband changed completely;<br />
he moved out of our bedroom and refused <strong>to</strong> eat<br />
the food I prepared. He <strong>to</strong>ld all of his relatives<br />
in Dar es Salaam that I was HIV pos<strong>it</strong>ive, and<br />
that I knew my HIV status before and wanted <strong>to</strong><br />
deliberately kill him. As if that was not enough,<br />
he then came w<strong>it</strong>h his sister demanding <strong>to</strong> know<br />
who the father of our daughter was, as <strong>it</strong> could<br />
not possibly be him, considering his status.<br />
My husband went on stigmatising me and then<br />
I became ill and was adm<strong>it</strong>ted <strong>to</strong> hosp<strong>it</strong>al. I was<br />
retested for my CD4 count and found out that<br />
I had only six CD4 cells. From the hosp<strong>it</strong>al, my<br />
relatives <strong>to</strong>ok me <strong>to</strong> the family house <strong>to</strong> care for<br />
me, but after a while my husband said he wanted<br />
me back home, as he <strong>to</strong>o could take good care<br />
of me. I refused, and his relatives reminded us<br />
that they had paid a dowry for him <strong>to</strong> marry me<br />
through good and bad times, and that according<br />
<strong>to</strong> our trad<strong>it</strong>ions and culture I belonged <strong>to</strong> him.<br />
15
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
I had no choice but <strong>to</strong> return. Things got worse<br />
and I developed a fungus in my body; even my<br />
heart was surrounded by tuberculosis (TB) fluid.<br />
Back at the hosp<strong>it</strong>al, I <strong>to</strong>ld the doc<strong>to</strong>r of my life at<br />
home and pleaded w<strong>it</strong>h him <strong>to</strong> adm<strong>it</strong> me for three<br />
months <strong>to</strong> regain my strength. The doc<strong>to</strong>r <strong>to</strong>ld my<br />
relatives what was happening, so they talked <strong>to</strong><br />
my husband and <strong>to</strong>ok my daughter.<br />
While in hosp<strong>it</strong>al, I recalled everything about my<br />
life and realised that instead of getting support,<br />
a woman can struggle at the hands of someone<br />
she loves. I thought if a young woman of my<br />
education who knows her rights can face stigma<br />
like this, what about those who are not educated,<br />
well off and do not know their rights? We women<br />
do not have the power <strong>to</strong> refuse sex when we<br />
do not want <strong>it</strong>. I prayed and promised God that<br />
when I regained my strength, I would use my<br />
experience and stand up for the rights of women<br />
and girls.<br />
I had spir<strong>it</strong>ual counselling and forgave my<br />
husband, but I knew that we could no longer live<br />
<strong>to</strong>gether. I found a house and informed him that<br />
we would be leaving in a few days. I have since<br />
started a new life w<strong>it</strong>h my daughter, Iman, and we<br />
are both on ARV medication.<br />
W<strong>it</strong>h the advice and assistance of a lawyer, I<br />
in<strong>it</strong>ially filed for separation, and after a year I will<br />
be able <strong>to</strong> proceed w<strong>it</strong>h a divorce. I also got full<br />
cus<strong>to</strong>dy of my daughter. The lawyer also advised<br />
me <strong>to</strong> prepare my will <strong>to</strong> identify a guardian for<br />
her in the event of my death.<br />
I am now a counsellor for different groups and<br />
networks of people living w<strong>it</strong>h HIV and AIDS and<br />
fa<strong>it</strong>h based organisations (churches and Muslim<br />
groups). I am a Coordina<strong>to</strong>r for the Network of<br />
Young People living w<strong>it</strong>h HIV and AIDS (NYP+)<br />
and the Association of HIV and AIDS activists in<br />
Tanzania. I do home based care in partnership<br />
w<strong>it</strong>h networks of widows and disabled women<br />
living w<strong>it</strong>h HIV and AIDS.<br />
W<strong>it</strong>h the Tanzanian Government Ministries and<br />
the private sec<strong>to</strong>r, I facil<strong>it</strong>ate HIV and AIDS<br />
training in the workplace. W<strong>it</strong>h assistance from<br />
peers who are living openly w<strong>it</strong>h HIV, we are<br />
planning outreach <strong>to</strong> commercial sex workers<br />
and other marginalised groups w<strong>it</strong>h the aim <strong>to</strong><br />
creating awareness on HIV and AIDS.<br />
I organise a group of young women and girls<br />
living w<strong>it</strong>h HIV and AIDS, and link them <strong>to</strong><br />
primary, secondary schools and the univers<strong>it</strong>y,<br />
in<strong>it</strong>iating discussion of peers about HIV and<br />
16<br />
AIDS. Young women particularly struggle from<br />
cultural upbringing, and families leave their<br />
children <strong>to</strong> go out and learn sexual<strong>it</strong>y issues<br />
from the world. There is a myth that education<br />
encourages young people <strong>to</strong> engage in sexual<br />
activ<strong>it</strong>ies.<br />
Poverty makes young women anxious <strong>to</strong> have<br />
better things. In Tanzania we have a s<strong>it</strong>uation<br />
where girls and young women in schools and<br />
univers<strong>it</strong>y are being courted w<strong>it</strong>h the promise<br />
of a better life. Some families benef<strong>it</strong> financially<br />
from these relationships. I realise that the trust<br />
built in these relationships keeps young women<br />
from demanding safer sex. The rationale is that<br />
if men are able <strong>to</strong> provide for them, they would<br />
not do them harm. Among the students, I more<br />
particularly work w<strong>it</strong>h five young women living<br />
w<strong>it</strong>h HIV and AIDS who have been a source<br />
of information <strong>to</strong> me in terms of their personal<br />
experiences.<br />
I am now working w<strong>it</strong>h the International<br />
Commun<strong>it</strong>y of Women living w<strong>it</strong>h HIV and<br />
AIDS (ICW) as an Officer for the Parliamentary<br />
leadership for Women’s Health (PWH) project<br />
in Tanzania. One of my responsibil<strong>it</strong>ies is <strong>to</strong> link<br />
HIV pos<strong>it</strong>ive women <strong>to</strong> other agencies, partners<br />
and parliamentarians, as may be appropriate<br />
<strong>to</strong> enhance HIV and AIDS responses. This job<br />
enables me <strong>to</strong> reach more people in different<br />
regions and fulfil my goal of assisting women<br />
and girls living w<strong>it</strong>h HIV and AIDS <strong>to</strong> benef<strong>it</strong> from<br />
health services and be represented in policy<br />
issues.<br />
Being young, we can make a difference and<br />
change the world. Let us as young women join<br />
hands in different countries and make an impact<br />
on HIV and AIDS. Life has <strong>to</strong> go on and we<br />
have <strong>to</strong> show <strong>it</strong>, so stand up and move your fa<strong>it</strong>h<br />
forward; put <strong>it</strong> in<strong>to</strong> action. We can do <strong>it</strong>!<br />
Born: 1976<br />
Country: Tanzania<br />
Organisation: Network of<br />
Young People living w<strong>it</strong>h<br />
HIV and AIDS (NYP+);<br />
Association of HIV and<br />
AIDS Activists; ICW<br />
Tanzania<br />
Campaigns for: HIV<br />
awareness and access<br />
<strong>to</strong> health services for<br />
PLWHA
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Sibyl Olivera<br />
... the only way <strong>to</strong> reach the commun<strong>it</strong>y in an efficient<br />
way is through the work of many people in an<br />
organised way.<br />
I am the daughter of a long serving member of the <strong>YWCA</strong>, so from my cradle I have been a part of<br />
<strong>it</strong>s activ<strong>it</strong>ies and at the age of twelve I started <strong>to</strong> actively participate. As one of the first members of<br />
<strong>YWCA</strong> La Banda, Santiago del Estero, I was selected <strong>to</strong> be a delegate <strong>to</strong> the Federation of <strong>YWCA</strong>s<br />
in Argentina, and later, the youth vice-president. Currently, I am the youth coordina<strong>to</strong>r of a project on<br />
sexual and reproductive health and HIV and AIDS.<br />
My parents are both doc<strong>to</strong>rs and since my teenage years, HIV and AIDS were words known <strong>to</strong> me.<br />
However, what I thought I knew was completely different from real<strong>it</strong>y. In the beginning, <strong>it</strong> was a disease<br />
transm<strong>it</strong>ted through sexual relations and related <strong>to</strong> homosexuals, and therefore posed no threat <strong>to</strong> my<br />
family.<br />
In 1990 at the age<br />
of sixteen, I met Lisa<br />
Martyn, a member<br />
of the <strong>YWCA</strong> of<br />
Brazil, who came<br />
<strong>to</strong> La Banda <strong>to</strong> give<br />
presentations in<br />
secondary schools<br />
about HIV and AIDS.<br />
During that time,<br />
every issue relating in<br />
any way <strong>to</strong> sex was<br />
raised. It was in these<br />
discussions that I<br />
learnt that AIDS was<br />
not just of concern <strong>to</strong><br />
homosexuals; we are<br />
all at risk of infection<br />
if exposed <strong>to</strong> <strong>it</strong>,<br />
including the rich, the<br />
poor, homosexuals,<br />
heterosexuals, men,<br />
women, adults,<br />
children and even<br />
newborn babies.<br />
17
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
From this point on, I developed an interest in HIV and AIDS. It is a threat <strong>to</strong> the life of my commun<strong>it</strong>y,<br />
simply because methods of HIV transmission and prevention are unknown <strong>to</strong> us, making true the cruel<br />
saying that ‘ignorance kills’.<br />
We knew at the <strong>YWCA</strong> La Banda that the fight would be difficult; not only did we not receive support<br />
from the Government, but also any NGO sexual education programme was considered suspicious. In<br />
1998, we began a project supported by the <strong>World</strong> <strong>YWCA</strong>’s Women and Development Fund, <strong>to</strong> train<br />
facil<strong>it</strong>a<strong>to</strong>rs and commun<strong>it</strong>y leaders <strong>to</strong> establish a business enterprise that is collectively owned and<br />
managed for joint economic benef<strong>it</strong>s in neighbourhoods of La Banda. This training had modules<br />
on education, business entrepreneurship, health and san<strong>it</strong>ation, including HIV, AIDS, and legal<br />
rights, which was the one I coordinated. The project mainly targeted people living in the poorest<br />
neighbourhoods in our commun<strong>it</strong>y, where public in<strong>it</strong>iatives pay l<strong>it</strong>tle attention <strong>to</strong> their needs. These<br />
commun<strong>it</strong>ies face many challenges, but we had courage and determination <strong>to</strong> bring about change.<br />
For many participants, the issue of HIV and AIDS was completely unknown and for this reason, difficult<br />
<strong>to</strong> handle. However, <strong>it</strong> was a big surprise for me <strong>to</strong> learn that some of my students were HIV pos<strong>it</strong>ive.<br />
It was then that I could understand the grief of a person living w<strong>it</strong>h HIV and that of their family; grief<br />
that is spread from the embarrassment <strong>to</strong> the helplessness caused by not knowing where <strong>to</strong> go for<br />
assistance, and the only certain thing being that <strong>it</strong> was a death sentence.<br />
W<strong>it</strong>nessing the link between many social issues, we were inspired by this project <strong>to</strong> implement<br />
another one in 2004 on reproductive health and HIV and AIDS. The <strong>World</strong> <strong>YWCA</strong> also financed this<br />
project, which is carried<br />
out by adolescents<br />
for adolescents, w<strong>it</strong>h<br />
the full guidance of<br />
the professionals<br />
that form the<br />
interdisciplinary panel.<br />
I am part of this<br />
panel and serve as a<br />
facil<strong>it</strong>a<strong>to</strong>r. The group<br />
of 15 young women<br />
goes <strong>to</strong> different<br />
schools, public and<br />
private, where they<br />
give their presentation<br />
on reproductive<br />
health <strong>to</strong> adolescents<br />
between 13-16, and<br />
a more complex<br />
presentation, which<br />
includes HIV and<br />
AIDS, <strong>to</strong> teenagers<br />
between 16-20. There<br />
is a module dealing<br />
w<strong>it</strong>h prevention and<br />
treatment of HIV<br />
and AIDS, as well<br />
as an orientation <strong>to</strong><br />
places of assistance.<br />
Through our work in<br />
local neighbourhoods<br />
we have been able <strong>to</strong><br />
get through <strong>to</strong> the core<br />
of families.<br />
18
Young women intervene in a world w<strong>it</strong>h AIDS<br />
I am a lawyer by profession and my job will<br />
always be <strong>to</strong> advocate for the common well being<br />
of commun<strong>it</strong>ies through elec<strong>to</strong>ral pol<strong>it</strong>ics. I was<br />
a pol<strong>it</strong>ical candidate in more than one election,<br />
speaking always in my pol<strong>it</strong>ical platform about<br />
education, prevention and the treatment of HIV<br />
and AIDS.<br />
I am comm<strong>it</strong>ted <strong>to</strong> work on HIV because, by<br />
preventing infections, we may save a life, and<br />
saving a life is the first step <strong>to</strong> saving the entire<br />
world. I also want <strong>to</strong> promote research <strong>to</strong> find a<br />
cure or at least medicines that make the lives of<br />
people infected by the virus better.<br />
I will always be in debt <strong>to</strong> my mother, Dr.<br />
Fernanda Acevedo and my sister Dr. Claudia<br />
Olivera, not only because they shaped the path<br />
I am following, but also because they offered<br />
their experiences <strong>to</strong> help me avoid many<br />
bad ones. In many ways they have been my<br />
‘inspiring muses’ and I will always aspire <strong>to</strong> be<br />
like them; extremely upright women, loving and<br />
just mothers, and comm<strong>it</strong>ted professionals.<br />
The incommensurable love I have always<br />
received helped me <strong>to</strong> have high self-esteem<br />
and objectives. However, the simplic<strong>it</strong>y of that<br />
love allowed me <strong>to</strong> see that my vocation of<br />
mother and head of the family were ways <strong>to</strong> find<br />
happiness. It is through this combined profile<br />
of a professional and a mother that I feel like a<br />
complete woman. Today, they remain my guides<br />
and are the two people who support me in the<br />
most difficult moments.<br />
I feel a lot of satisfaction when I meet people<br />
from my commun<strong>it</strong>y on the street and they s<strong>to</strong>p<br />
me, greeting me w<strong>it</strong>h great fondness. Sometimes<br />
I do not remember their faces and they tell me<br />
that they were my students in the <strong>YWCA</strong> project.<br />
They always comment on how good things are in<br />
the cooperatives that were created through our<br />
first project, which now provides the main income<br />
source for all of them.<br />
Every time we go <strong>to</strong> schools and talk about<br />
reproductive health and HIV and AIDS, all the<br />
members of this project get exc<strong>it</strong>ed <strong>to</strong> see how<br />
these boys and girls open their minds and<br />
their hearts <strong>to</strong> our message. This project is an<br />
everyday accomplishment because <strong>it</strong> is the fru<strong>it</strong><br />
of a lot of work, time and passion.<br />
From the <strong>YWCA</strong> I received much training when<br />
I was one of the delegates <strong>to</strong> the Federation<br />
of <strong>YWCA</strong>s, and at univers<strong>it</strong>y, in the Faculty of<br />
Law, we are trained <strong>to</strong> have a cr<strong>it</strong>ical opinion<br />
as well as <strong>to</strong> help create and promote social<br />
changes.<br />
I strongly believe that the only way <strong>to</strong> reach<br />
the commun<strong>it</strong>y effectively is through the work<br />
of many people, carried out in an organised<br />
way. Every person has a different att<strong>it</strong>ude,<br />
and a leader is the one able <strong>to</strong> recognise and<br />
coordinate all these qual<strong>it</strong>ies. A leader not<br />
only influences the life of those who work w<strong>it</strong>h<br />
her but also reaches the commun<strong>it</strong>y through<br />
them.<br />
In the <strong>YWCA</strong> La Banda, there are several young<br />
people whom I men<strong>to</strong>r and w<strong>it</strong>h whom I enjoy a<br />
good relationship. My age allows me <strong>to</strong> be the<br />
link between older women and young women,<br />
articulating activ<strong>it</strong>ies by understanding what they<br />
expect from each other. Our trainings are open <strong>to</strong><br />
all women who want <strong>to</strong> be part of our work, and I<br />
have found many teenage girls who are eager for<br />
knowledge and are just wa<strong>it</strong>ing for someone <strong>to</strong><br />
guide them <strong>to</strong>wards their own destiny, working in<br />
the commun<strong>it</strong>y.<br />
The HIV and AIDS project I am working on is a<br />
<strong>YWCA</strong> project, although we do network w<strong>it</strong>h other<br />
NGOs and w<strong>it</strong>h the Government. In Santiago del<br />
Estero, the challenges are substantial: poverty,<br />
ignorance and fear. The only way <strong>to</strong> overcome<br />
these is <strong>to</strong> have a strong objective in a group.<br />
From my experience, there are many things that<br />
can be achieved when many people give support<br />
<strong>to</strong> one another.<br />
Born: 1975<br />
Country: Argentina<br />
Organisation: <strong>YWCA</strong> La Banda<br />
Campaigns for: HIV prevention and treatment;<br />
reproductive health education<br />
19
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Frika Chia Iskandar<br />
At the time, I did not know anything. All I knew<br />
was shame, but now I am here <strong>to</strong> save lives.<br />
Mostly because of peer pressure, at the age of<br />
16, in my native Jakarta, Indonesia, I started<br />
sharing heroin using hypodermic needles w<strong>it</strong>h<br />
drug users who thought <strong>it</strong> was ‘cool’. When I<br />
was 18 years old, I went in<strong>to</strong> rehabil<strong>it</strong>ation in<br />
the Harapan Permata Hati K<strong>it</strong>a Foundation in<br />
the Bogor region, which provides de<strong>to</strong>xification,<br />
counselling, and therapy for young drug users.<br />
Before I went in<strong>to</strong> rehabil<strong>it</strong>ation, I was treated<br />
in one of the private hosp<strong>it</strong>als in Jakarta. While<br />
unconscious and undergoing de<strong>to</strong>xification in<br />
the hosp<strong>it</strong>al, the doc<strong>to</strong>r tested me for HIV and<br />
Hepat<strong>it</strong>is C. It came out that I was co-infected.<br />
I returned home. It was a horrible experience,<br />
as I did not receive any information about HIV.<br />
All I felt was fear, uselessness and anger. Not<br />
long after that I was lucky <strong>to</strong> find a place, which<br />
accepts drug users who are HIV pos<strong>it</strong>ive for<br />
rehabil<strong>it</strong>ation, because there are many centres<br />
in Indonesia that do not. It is here that I became<br />
active in the peer self support group and learnt a<br />
lot about HIV, Hepat<strong>it</strong>is C and drug use.<br />
At the time, I didn’t know anything. All I knew was<br />
shame, but now I’m here <strong>to</strong> save lives. Now I<br />
feel that I can be something and useful for other<br />
people again. I believe that by helping other<br />
people, I am helping <strong>myself</strong> <strong>to</strong>o.<br />
Shortly after my rehabil<strong>it</strong>ation, I joined the<br />
Indonesia PLWHA (people living w<strong>it</strong>h HIV and<br />
AIDS) Network and worked at the Spir<strong>it</strong>ia<br />
Foundation, which is the secretariat of the<br />
network, as a field manager until the beginning<br />
of this year. Spir<strong>it</strong>ia is a non-governmental<br />
organisation that has been working w<strong>it</strong>h and<br />
for people living w<strong>it</strong>h HIV and AIDS since 1995.<br />
It pioneered the creation of such a network in<br />
20<br />
Indonesia, and <strong>it</strong>s vision is <strong>to</strong> provide qual<strong>it</strong>y care<br />
and support, while respecting the human rights<br />
of PLWHA in Indonesia. Spir<strong>it</strong>ia is supporting the<br />
involvement of PLWHA by organising training,<br />
resources and information; this is tremendously<br />
important in a country as large and diverse as<br />
Indonesia.<br />
In<strong>it</strong>ially I experienced discrimination from<br />
my family. They might have freaked out and<br />
discriminated against me at home, but I came<br />
<strong>to</strong> understand that <strong>it</strong> was out of fear and<br />
lack of information. I believe that parents will<br />
always accept their children no matter what the<br />
s<strong>it</strong>uation. There is no such thing as an ex-child<br />
or former child. And in 2003 we started PITA, a<br />
support group for parents who have HIV pos<strong>it</strong>ive<br />
children. This is another peer approach that I<br />
find really helpful. Parents also need <strong>to</strong> share<br />
their feelings and experiences.<br />
I do not live in the same house as them anymore,<br />
as I am now married and we have our own home,<br />
but we live in the same c<strong>it</strong>y.<br />
I am now active w<strong>it</strong>h the PITA foundation, which<br />
was officially registered in mid 2005. It carries<br />
out support activ<strong>it</strong>ies for PLWHA and affected<br />
commun<strong>it</strong>ies (including parents who have HIV<br />
pos<strong>it</strong>ive children, husbands, wives, brothers,<br />
sisters) because I know that HIV pos<strong>it</strong>ive people<br />
should not live alone, as we need support and<br />
love from our family and friends, and they need<br />
support <strong>to</strong>o. Using the peer prevention approach,<br />
PITA also involves student volunteers from<br />
univers<strong>it</strong>y. The students develop information and<br />
education communication material and wr<strong>it</strong>e<br />
newspaper articles. PITA’s activ<strong>it</strong>ies include<br />
counselling, providing buddy support systems
Young women intervene in a world w<strong>it</strong>h AIDS<br />
for treatment, and hosp<strong>it</strong>al referrals. We also<br />
provide HIV and AIDS field training, on a oneon-one<br />
basis, and home based care training<br />
and assistance <strong>to</strong> families. We did not have<br />
our own place for our programmes, but we did<br />
get a space in the UNAIDS office <strong>to</strong> be able <strong>to</strong><br />
operate. Being a new and small organisation<br />
w<strong>it</strong>h a large outreach, we are also challenged by<br />
lim<strong>it</strong>ed human resources. To address some of<br />
these issues, we make ribbons and necklaces as<br />
a way <strong>to</strong> raise funds and pay for the volunteers’<br />
transport. Now we rent a very small space. Even<br />
though <strong>it</strong> is small <strong>it</strong> is our own space.<br />
W<strong>it</strong>h funds from the Asia Pacific Leadership<br />
Foundation, PITA and Spir<strong>it</strong>ia held a national<br />
workshop for 35 HIV pos<strong>it</strong>ive women from 10<br />
provinces in September 2005. This was the first<br />
workshop, which involved all women. It was<br />
in<strong>it</strong>iated by four women and we agreed <strong>to</strong> start<br />
a national network for women living w<strong>it</strong>h HIV<br />
and AIDS in Indonesia. We are planning <strong>to</strong> call <strong>it</strong><br />
Ikatan Perempuan Pos<strong>it</strong>if Indonesia (IPPI), and<br />
are hoping that <strong>it</strong> will soon become a real<strong>it</strong>y.<br />
I got married in February 2005 <strong>to</strong> a man I love<br />
and who is willing <strong>to</strong> accept me as I am. He<br />
is HIV negative and we went through a lot of<br />
challenges <strong>to</strong>gether. I’m grateful that he is always<br />
w<strong>it</strong>h me <strong>to</strong> face difficult s<strong>it</strong>uations. He is a great<br />
support <strong>to</strong> me in my work on drug use and HIV<br />
and AIDS, and he helped me <strong>to</strong> register the PITA<br />
foundation.<br />
I am here <strong>to</strong>day doing this work thanks <strong>to</strong><br />
the support I get from everyone around me. I<br />
21
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
started w<strong>it</strong>h the support group, and have been<br />
developing skills and organisations along the<br />
way. In March 2002, I was appointed as the<br />
Indonesian representative for APN+ (Asia Pacific<br />
Network of PLWHA), for three years, and also<br />
selected as a co-chair. I am also a board member<br />
of the Global Network of PLWHA representing<br />
the Asia Pacific region, and have become an<br />
advocate for PLWHA, especially for women in<br />
the region. I am more outspoken outside my<br />
country as <strong>it</strong> is easier, and my parents are not<br />
yet ready, as they are afraid that <strong>it</strong> will affect their<br />
business. Desp<strong>it</strong>e this, they are very supportive<br />
of my work at home and abroad. It was not easy<br />
at first because of my lack of confidence, but w<strong>it</strong>h<br />
training at conferences and other platforms, I<br />
became a speaker. I pay my bills by working part<br />
time and saving on per diems received from my<br />
work travels.<br />
Drug use is the driving fac<strong>to</strong>r behind the<br />
increasing HIV prevalence in Indonesia. This<br />
makes our work challenging as families s<strong>to</strong>p<br />
coming <strong>to</strong> the support group when children<br />
relapse in<strong>to</strong> drug use. Until children are okay,<br />
families are ashamed <strong>to</strong> come back <strong>to</strong> the group.<br />
The other problem is that elders do not want <strong>to</strong><br />
listen <strong>to</strong> youth because they believe they have<br />
more experience. The greater involvement of<br />
PLWHA is therefore about involving the affected<br />
commun<strong>it</strong>y as well. This is why we have <strong>to</strong> focus<br />
on developing the knowledge of parents about<br />
HIV and AIDS and challenges facing youth.<br />
The Global Coal<strong>it</strong>ion on Women and AIDS<br />
(GCWA) is a good in<strong>it</strong>iative because <strong>it</strong> focuses<br />
on all regions of the world, not only Africa. I<br />
was involved in the US women vis<strong>it</strong>s before<br />
w<strong>it</strong>h another three women from other regions<br />
in raising awareness for women and AIDS. We<br />
have <strong>to</strong> continue building <strong>it</strong>, speaking out and<br />
engaging women for <strong>it</strong> <strong>to</strong> be known at country<br />
levels. Similarly, the UNICEF campaign Un<strong>it</strong>e<br />
for Children, Un<strong>it</strong>e Against AIDS is crucial, and<br />
has a strong link <strong>to</strong> what the GCWA wants <strong>to</strong><br />
accomplish, as you cannot separate women<br />
from children. I represented young women of<br />
reproductive age at the launch. It is true that<br />
children are the missing face of AIDS, even<br />
paediatric treatment is lacking. I am now working<br />
as a consultant in helping UNICEF in Indonesia<br />
for the Global Campaign on Children and AIDS,<br />
‘Un<strong>it</strong>e for Children, Un<strong>it</strong>e against AIDS’<br />
Occasionally I have been denied medical care<br />
and may face discrimination at home once I<br />
disclose my status. But I am still standing here. I<br />
am a new face of HIV in Asia.<br />
22<br />
Born: 1981<br />
Country: Indonesia<br />
Organisations: Asia Pacific Network<br />
of People Living w<strong>it</strong>h HIV and AIDS<br />
(APN+),<br />
Indonesian PLWHA National Network,<br />
Global Network of People Living w<strong>it</strong>h<br />
HIV and AIDS (GNP+), International<br />
Treatment Preparedness, South East<br />
Asia Treatment Preparedness<br />
Campaigns for: support for PLWHA<br />
and their families, and an end <strong>to</strong><br />
discrimination faced by HIV<br />
pos<strong>it</strong>ive injecting drug users
Young women intervene in a world w<strong>it</strong>h AIDS<br />
TOOL BOX<br />
Speak Out<br />
Being strategic will assist you <strong>to</strong> get your point across and have an impact.<br />
You need <strong>to</strong> be heard in a significant way and reach as large an audience<br />
as possible, mobilising your commun<strong>it</strong>y w<strong>it</strong>h a specific message that will<br />
encourage people <strong>to</strong> continue <strong>to</strong> advocate for a particular cause.<br />
Steps <strong>to</strong> maximise your message<br />
• Consider the issue that you would like <strong>to</strong> bring <strong>to</strong> attention<br />
• Collect data that will help you back up your point w<strong>it</strong>h evidence<br />
• Set your goal and objectives<br />
• Create a short and precise message (Statement + Evidence + Specific<br />
Example + Call <strong>to</strong> Action)<br />
• Who is your target group (is your message for pol<strong>it</strong>icians, NGOs, civil<br />
society or commun<strong>it</strong>y members)?<br />
• Who can you partner w<strong>it</strong>h <strong>to</strong> build support? Who are possible allies?<br />
• How are you going <strong>to</strong> deliver your message?<br />
• How are you going <strong>to</strong> implement your message?<br />
• Mon<strong>it</strong>or the process throughout so that you can learn what works and<br />
doesn’t work for next time.<br />
23
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
TOOL BOX<br />
Fundraising<br />
There are many different ways of wr<strong>it</strong>ing a proposal and below are just a<br />
few guidelines <strong>to</strong> get you started.<br />
Your proposal is more likely <strong>to</strong> receive funding if the potential donor’s<br />
prior<strong>it</strong>ies are closely linked <strong>to</strong> the issues your project addresses. Read<br />
funding guidelines from as many funding sources as possible. Include<br />
NGOs, local and foreign governments, aid organisations and corporate<br />
corporations.<br />
Ensure that you have the following donor information:<br />
• Proposal guidelines<br />
• List of previously funded projects or annual report<br />
• What is their minimum and maximum funding for programmes like yours<br />
• Be aware of any other grant sources that you might be legible for.<br />
Keep the proposal as short and concise as possible. Always subm<strong>it</strong> your<br />
proposal BEFORE the submission deadline, and confirm that <strong>it</strong> has been<br />
received.<br />
Your proposal could take this format:<br />
• Project t<strong>it</strong>le<br />
• Wr<strong>it</strong>e a paragraph on the general background of the s<strong>it</strong>uation your project<br />
will address<br />
• Wr<strong>it</strong>e a paragraph giving background information on your organisation<br />
• Create a short mission statement or goal<br />
• List your objectives<br />
• Wr<strong>it</strong>e a l<strong>it</strong>tle about why you have this idea, stating what the problem is<br />
• Define who the beneficiary population is<br />
• Clearly state the results you plan <strong>to</strong> see and for each result an indica<strong>to</strong>r<br />
(how you plan <strong>to</strong> measure if you have been successful or not)<br />
• What is your timeframe?<br />
• Create an implementation plan.<br />
The budget<br />
A well-planned and correct budget reflects a well thought out project.<br />
• Is the budget consistent w<strong>it</strong>h proposed activ<strong>it</strong>ies?<br />
• Is there sufficient detail and explanation?<br />
• Make sure you have not over/under budgeted for anything<br />
• <strong>If</strong> you live in a country w<strong>it</strong>h high inflations allocate for this.<br />
24<br />
Follow up:<br />
Stay in contact w<strong>it</strong>h the prospective donor and keep track of the status of<br />
your proposal. Whether or not your project is funded, thank the donor for<br />
taking the time <strong>to</strong> assess your project. <strong>If</strong> possible, ask for feedback on the<br />
strengths and weaknesses of your proposal.
Education
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Vidah Bossa<br />
The peer <strong>to</strong> peer approach helps young people <strong>to</strong> share<br />
freely and express openly their views about health,<br />
social and economic lifestyles.<br />
26<br />
My name is Vidah Bossa, a 27-year-old woman<br />
from Uganda holding a Bachelor of Science in<br />
Commerce from Makerere Univers<strong>it</strong>y of Uganda<br />
I joined the <strong>YWCA</strong> at the age of 15 as a youth<br />
volunteer and served as a member of the youth<br />
comm<strong>it</strong>tee. As she was leaving the <strong>YWCA</strong> of<br />
Uganda, the former youth coordina<strong>to</strong>r encouraged<br />
me <strong>to</strong> apply. She had so much trust and<br />
confidence in me that although I was not really<br />
interested in the pos<strong>it</strong>ion, I applied anyway. A few<br />
weeks later, my friend died, and I decided <strong>to</strong> follow<br />
in her footsteps, as she had desired.<br />
As I started my work as youth coordina<strong>to</strong>r,<br />
a national survey carried out at voluntary<br />
counselling and testing centres (VCTs) and<br />
schools revealed that youth are not open <strong>to</strong><br />
discussing issues affecting their lives w<strong>it</strong>h<br />
available educa<strong>to</strong>rs because they do not identify<br />
w<strong>it</strong>h them. Inspired by this research and realising<br />
that young people do not have a voice, I started<br />
a peer education outreach project in January<br />
2004. The aim of the project was <strong>to</strong> give a voice<br />
<strong>to</strong> young people by creating a platform in an<br />
organised structure through which they could<br />
express themselves. The project targets young<br />
women and men in seven of the districts where<br />
<strong>YWCA</strong> operates.<br />
Each district has a coordina<strong>to</strong>r and sixty youth<br />
ambassadors; of which twenty are HIV pos<strong>it</strong>ive.<br />
The peer approach is conducted through training<br />
of youth leaders in districts on prevention,<br />
care and support, HIV and AIDS, life planning,<br />
reproductive health and income generating activ<strong>it</strong>ies. Participants are also encouraged <strong>to</strong> go for<br />
voluntary counselling and testing so that they know their HIV status and lead responsible lives.<br />
The trained peer ambassadors then train others w<strong>it</strong>hin the district, who then do outreach w<strong>it</strong>hin the<br />
commun<strong>it</strong>ies they come from.
Young women intervene in a world w<strong>it</strong>h AIDS<br />
This approach helps young people <strong>to</strong> share freely and express openly their<br />
views about health and social and economic lifestyles. I vis<strong>it</strong> the districts<br />
on a quarterly basis <strong>to</strong> evaluate their progress and listen <strong>to</strong> their concerns.<br />
This has enabled me <strong>to</strong> identify the most pressing issues and try <strong>to</strong> work out<br />
solutions for them.<br />
The peer approach has reached approximately five hundred young people<br />
in each district in the past year. The target age group for training is 7-30.<br />
Parents, commun<strong>it</strong>y and religious leaders are involved in the in<strong>it</strong>ial stage,<br />
which consists of sens<strong>it</strong>isation, building partnerships and networking.<br />
Involving our elders helps each party share, understand and accept each<br />
other’s views regarding young people’s outreach programmes. The district<br />
leaders and ambassadors are responsible for running the activ<strong>it</strong>ies in their<br />
regions and take all the necessary decisions pertaining <strong>to</strong> the project. We<br />
continue <strong>to</strong> follow up and mon<strong>it</strong>or the training programmes through district<br />
coordina<strong>to</strong>rs and ambassadors.<br />
Through workshops, ambassadors emphasise the use of medicinal herbs<br />
and better nutr<strong>it</strong>ion in the treatment of various diseases. This knowledge<br />
has proved cost effective for those in the rural areas who cannot afford<br />
medicines. The workshops usually involve group discussions and home<br />
vis<strong>it</strong>s. The ambassadors also refer the sick <strong>to</strong> various hosp<strong>it</strong>als and clinics<br />
that provide treatment.<br />
We find <strong>it</strong> difficult <strong>to</strong> use the training manual developed by our funding<br />
body, as <strong>it</strong> does not include active roles for people living w<strong>it</strong>h HIV or all<br />
of the activ<strong>it</strong>ies needed. We plan on updating the manual w<strong>it</strong>h input from<br />
ambassadors and district coordina<strong>to</strong>rs, as they are practically involved<br />
in training and have valuable insights. We are also in the process of<br />
fundraising w<strong>it</strong>h other donors and hope <strong>to</strong> be able <strong>to</strong> include more diverse<br />
activ<strong>it</strong>ies in the project <strong>to</strong> meet the needs of young people.<br />
Nevertheless, participants still benef<strong>it</strong> from the training as currently outlined<br />
by our donors. Participants receive instruction on the prevention of HIV and<br />
sexually transm<strong>it</strong>ted infections (STI) through the ‘abstain, be fa<strong>it</strong>hful, use<br />
condoms’ (ABC) model. They are then taught how <strong>to</strong> give care and support<br />
<strong>to</strong> those infected and affected by HIV and AIDS.<br />
The challenge we face is that youth do not receive the abstinence lecture<br />
very well. It is also difficult for us <strong>to</strong> measure the impact of this message,<br />
which is fa<strong>it</strong>h based, and most of our target groups are not staunch<br />
Christians and prefer the ‘use condoms’ option. Poverty is also pushing<br />
young people <strong>to</strong> engage in sexual activ<strong>it</strong>ies early. Young people who are<br />
not in school are particularly vulnerable. We also face different challenges<br />
dealing w<strong>it</strong>h young men and women. We are able <strong>to</strong> reach young mothers,<br />
but find <strong>it</strong> hard <strong>to</strong> work w<strong>it</strong>h their partners.<br />
Through this peer education outreach programme, the young people who<br />
participate not only gain knowledge on HIV and AIDS but also receive skills<br />
they can use in their daily lives. We are very grateful for this project and<br />
hope <strong>to</strong> raise more support from different donors <strong>to</strong> help young people who<br />
are involved in this pandemic that has so deeply affected our generation.<br />
Born: 1978<br />
Country: Uganda<br />
Organisation: <strong>YWCA</strong> of Uganda<br />
Campaigns for: Youth peer<br />
education and leadership on HIV<br />
27
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Tuwilika He<strong>it</strong>a<br />
I found her there and she <strong>to</strong>ld me “l<strong>it</strong>tle sister be a good<br />
girl, don’t follow what I did. Take care of yourself and<br />
be aware of HIV and AIDS. As you see me lying here <strong>it</strong> is<br />
because of HIV and AIDS.”<br />
My name is Tuwilika He<strong>it</strong>a, a 20-year-old woman<br />
from Namibia. I became interested in HIV and<br />
AIDS and youth issues while in high school.<br />
Since we did not have a life skills guidance<br />
teacher, nor did we receive education on sex<br />
or sexual<strong>it</strong>y, the only place I could get involved<br />
in HIV and AIDS issues was in clubs and<br />
associations. I joined an AIDS awareness club<br />
and My Future Is My Choice (MFMC) as these<br />
provided the only chance for young people <strong>to</strong> talk<br />
about HIV and AIDS.<br />
The AIDS awareness club was developed <strong>to</strong><br />
empower and support high school students<br />
and was open <strong>to</strong> every interested student. This<br />
club established a management structure that<br />
included a facil<strong>it</strong>a<strong>to</strong>r. From the youth centre,<br />
we obtained books provided by the Ministry of<br />
Basic Education, Sport and Culture that were<br />
used for debates, games, discussions and other<br />
activ<strong>it</strong>ies that mobilised and educated us on HIV<br />
prevention and care issues.<br />
By the time I joined high school, I had already<br />
been affected by AIDS. My eldest sister died in<br />
2002 from an AIDS-related illness. I was fifteen<br />
years old when she first started getting ill. It<br />
was a difficult time for our family; my parents<br />
were separated and unemployed. Our family<br />
of six, four girls and two boys was broken. My<br />
eldest sister was supporting my siblings and me<br />
by paying our school fees and meeting other<br />
personal daily needs.<br />
I lived w<strong>it</strong>h my sister at the beginning of her<br />
illness. She started losing weight and getting<br />
sick, and <strong>it</strong> seemed that every week she would<br />
have <strong>to</strong> go <strong>to</strong> the hosp<strong>it</strong>al. Finally, she was<br />
diagnosed w<strong>it</strong>h Tuberculosis. She was given<br />
28<br />
many tablets, but the sickness <strong>kept</strong> increasing.<br />
We were very close then; she liked me a lot and<br />
was always there for me when I needed help in<br />
my schoolwork. Although we never discussed<br />
HIV or AIDS, I began <strong>to</strong> wonder if she had HIV.<br />
She had become pregnant the year before, but<br />
her child passed away when he was only two<br />
months old. Soon after, she was very sick and<br />
s<strong>to</strong>pped working.<br />
My other sisters lived w<strong>it</strong>h other family members,<br />
so I was the only girl around <strong>to</strong> take care of my<br />
sister. Once her health got worse, I started high<br />
school at a boarding school. Now, I could only<br />
make <strong>it</strong> home on weekends. When I was home,<br />
I always made sure that she ate healthy food<br />
and <strong>to</strong>ok her medication on time. I used <strong>to</strong> pray<br />
w<strong>it</strong>h her, sing spir<strong>it</strong>ual inspiring songs, and show<br />
her how much she meant <strong>to</strong> me and how much<br />
I loved her. At the end of that year, I <strong>to</strong>ok her <strong>to</strong><br />
our church and she gave her life <strong>to</strong> Jesus through<br />
me.<br />
At the beginning of 2002, <strong>it</strong> was my final year in<br />
high school and I had <strong>to</strong> be at school studying<br />
most of the time. I had noticed that when my<br />
sister was alone, her health would deteriorate.<br />
I think that she would not eat well or take her<br />
tablets according <strong>to</strong> the doc<strong>to</strong>r’s prescription. I<br />
hadn’t been <strong>to</strong> see her in two months when I got<br />
a message from a neighbour that I must come<br />
home immediately. My sister was in hosp<strong>it</strong>al and<br />
had been asking <strong>to</strong> see me. I found her there and<br />
she <strong>to</strong>ld me “l<strong>it</strong>tle sister be a good girl, don’t follow<br />
what I did. Take care of yourself and be aware<br />
of HIV and AIDS. As you see me lying here <strong>it</strong> is<br />
because of HIV and AIDS. Don’t go in<strong>to</strong> the world,<br />
stay w<strong>it</strong>h your Jesus in your heart and take care<br />
of my only son. I love you. Tell your other sisters
Young women intervene in a world w<strong>it</strong>h AIDS<br />
I love them.” That was the day she passed away. I was very <strong>to</strong>uched by her words even though, at the<br />
same time, I was very hurt by her death.<br />
I had joined the AIDS awareness club and MFMC a year before. After her death, I was able <strong>to</strong> talk<br />
about her illness more comfortably thanks <strong>to</strong> the clubs I had been involved in. The AIDS awareness<br />
club encouraged everyone <strong>to</strong> participate. My other club members are my men<strong>to</strong>rs, because through<br />
their ideas and advice during meetings and discussions, I have grown and developed as a young<br />
leader. In my final year of secondary school, I was selected as secretary of our club and my duties<br />
were <strong>to</strong> keep minutes and handle documents. I was also wr<strong>it</strong>ing reports on our club activ<strong>it</strong>ies for<br />
the youth newspaper. This is how I became comfortable and able <strong>to</strong> help others when they asked<br />
questions.<br />
When I finished secondary school, I continued <strong>to</strong> be involved in HIV and AIDS issues. W<strong>it</strong>h friends<br />
from my church, we would go <strong>to</strong> hosp<strong>it</strong>als and vis<strong>it</strong> people who were living w<strong>it</strong>h HIV and give them<br />
hope. By giving hope for another day, showing love, and sharing scriptures w<strong>it</strong>h them, we helped <strong>to</strong><br />
fight against discrimination.<br />
Currently, I am volunteering w<strong>it</strong>h the National Youth Council of Namibia as an Assistant Ed<strong>it</strong>or of a<br />
local youth newspaper ‘Open Talk’. It is a 4-page bi-monthly youth newspaper supplement produced<br />
by four young Namibians. It is funded by UNICEF w<strong>it</strong>h support from the National Youth Council of<br />
Namibia. The features include informative articles; interviews on various issues that affect youth; and<br />
highlights from the programme, ‘My Future Is My Choice’ and the national HIV and AIDS campaign<br />
programme ‘Take Control’. I am responsible for managing, controlling and collecting data on HIV and<br />
AIDS, presenting programmes and assessing the distribution of the newspaper <strong>to</strong> different schools<br />
and organisations countrywide.<br />
As a journalist for our newspaper, I also go <strong>to</strong> places where youth gather, interview them and take<br />
pictures for the newspaper. We have made arrangements <strong>to</strong> distribute the newspaper <strong>to</strong> all the<br />
schools that are far away from the cap<strong>it</strong>al c<strong>it</strong>y, Windhoek.<br />
29
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
I am also a member of the <strong>YWCA</strong> of Namibia.<br />
Since July 2004, I have been facil<strong>it</strong>ating<br />
workshops twice a week at different high<br />
schools. In these workshops we discuss how<br />
we can prevent HIV and AIDS infection, improve<br />
communication between young people and<br />
their parents, and improve our lives. The young<br />
people who attend our workshops gain skills and<br />
knowledge <strong>to</strong> educate others, and learn how <strong>to</strong><br />
give back <strong>to</strong> the commun<strong>it</strong>y. At the end of the<br />
workshop, everyone develops a pos<strong>it</strong>ive att<strong>it</strong>ude<br />
<strong>to</strong>wards family life education, sharing knowledge<br />
on sex, sexual<strong>it</strong>y and reproductive health issues,<br />
and on HIV and AIDS issues.<br />
I also work w<strong>it</strong>h the Council of Churches<br />
in Namibia (CCN) <strong>to</strong> combat stigma and<br />
discrimination in our churches and <strong>to</strong> mobilise<br />
young people <strong>to</strong> use the Voluntary Counselling<br />
and Testing (VCT) centres <strong>to</strong> know their status.<br />
W<strong>it</strong>h the CCN, we educate pas<strong>to</strong>rs on issues<br />
of HIV and AIDS and encourage them <strong>to</strong> talk<br />
openly about <strong>it</strong> w<strong>it</strong>h their congregation. Churches<br />
need <strong>to</strong> get involved by supporting people who<br />
are infected and affected by HIV and AIDS.<br />
In Namibia, there have been some churches<br />
that prohib<strong>it</strong> their members from starting antiretroviral<br />
treatment. We tell them that medication<br />
is needed; they have <strong>to</strong> allow people <strong>to</strong> go for<br />
treatment. People must be encouraged not <strong>to</strong><br />
judge people who are HIV pos<strong>it</strong>ive, instead<br />
we must give them hope. The Church has a<br />
responsibil<strong>it</strong>y and an important role <strong>to</strong> play in<br />
HIV and AIDS. Good morals and a change in<br />
behaviour are needed among young people in<br />
Namibia <strong>to</strong> curb the spread of HIV.<br />
Since high school I have been comm<strong>it</strong>ted <strong>to</strong><br />
fighting against ignorance surrounding HIV and<br />
AIDS in Namibia. I have upheld my sister’s<br />
wish for my life by becoming active in my<br />
commun<strong>it</strong>y.<br />
To become an effective volunteer, I went through<br />
basic computer l<strong>it</strong>eracy, counselling and peer<br />
education at the <strong>YWCA</strong> and other centres. This<br />
training has equipped me for the activ<strong>it</strong>ies I<br />
am currently involved in: designing the layout<br />
of Open Talk newspaper, responding <strong>to</strong> letters<br />
from young people countrywide regarding their<br />
problems, and facil<strong>it</strong>ating peer counselling in<br />
schools.<br />
30<br />
Born: 1985<br />
Country: Namibia<br />
Organisations: <strong>YWCA</strong>, National<br />
Youth Council, National Council<br />
of Churches of Namibia<br />
Campaigns for: an end <strong>to</strong><br />
stigma and discrimination<br />
against PLWHA; HIV and AIDS<br />
education among young people
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Alejandra Bus<strong>to</strong>s<br />
Our main message is <strong>to</strong> make students aware<br />
that anybody can get infected if they do not take<br />
preventative measures.<br />
I am a psychologist at the Pun<strong>to</strong> de encuentro<br />
office of the Universidad Tecnica Federico Santa<br />
Maria, Valparasio, Chile. The office aims <strong>to</strong><br />
create a better qual<strong>it</strong>y of life for students at the<br />
Univers<strong>it</strong>y by addressing and providing support<br />
regarding issues such as drugs, sexual<strong>it</strong>y and<br />
HIV and AIDS.<br />
My univers<strong>it</strong>y participates in the ‘Programma<br />
Alerta’, a HIV prevention programme involving<br />
the four main univers<strong>it</strong>ies in Valparasio. The<br />
objective of this programme is <strong>to</strong> ensure that<br />
each univers<strong>it</strong>y student has ample information<br />
on HIV prevention <strong>to</strong> make good decisions about<br />
their lives. It is an education and prevention<br />
programme. In add<strong>it</strong>ion <strong>to</strong> training and workshop<br />
sessions, each participating univers<strong>it</strong>y runs a<br />
volunteer counselling and testing centre (VCT) on<br />
their campus. The test is available free of charge<br />
and on a voluntary and anonymous basis. In<br />
fact, students have <strong>to</strong> sign a form declaring that<br />
nobody obliged them <strong>to</strong> take the test and that<br />
they have received counselling.<br />
HIV tests are analysed at the Univers<strong>it</strong>y of<br />
Valparaiso’s labora<strong>to</strong>ry of immunology and, if<br />
results are HIV pos<strong>it</strong>ive they are confirmed by<br />
the ISP (Inst<strong>it</strong>u<strong>to</strong> Nacional de Salud Publica)<br />
in Santiago. Students must go for post test<br />
counselling after receiving their test results. The<br />
HIV pos<strong>it</strong>ive results are shared w<strong>it</strong>h the National<br />
Health Service, w<strong>it</strong>hout names, for statistical<br />
purposes.<br />
Each month approximately 25 students take the<br />
test. Many more students request testing but<br />
because of budget restrictions we do not have<br />
enough HIV test k<strong>it</strong>s <strong>to</strong> perform tests on everyone<br />
who comes <strong>to</strong> the centre. Once a year, however,<br />
in preparation for <strong>World</strong> AIDS Day we offer 100<br />
tests. Annually, about 700 students are tested.<br />
Each one of the four univers<strong>it</strong>ies participating<br />
in the project gives a monthly contribution <strong>to</strong><br />
support the programme.<br />
I am part of the programme as a counsellor<br />
at the VCT centre offering counselling prior<br />
<strong>to</strong> testing. I guide students through sexually<br />
transm<strong>it</strong>ted infections (STI) and prevention<br />
methods, HIV testing window periods and<br />
31
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
responsible sexual behaviour, relieving their<br />
doubts and fears.<br />
I attended a school where working w<strong>it</strong>h the<br />
commun<strong>it</strong>y was very important. I was always<br />
involved in social activ<strong>it</strong>ies such as missions<br />
and solidar<strong>it</strong>y campaigns. This helped me<br />
develop skills such as good communication,<br />
assertiveness and leadership. In my vocational<br />
training, I reinforced these skills and developed<br />
an interest in sharing experiences and meeting<br />
people. I think this put me in a good pos<strong>it</strong>ion<br />
when I started <strong>to</strong> work on the prevention of HIV<br />
and AIDS. I was able <strong>to</strong> focus on the people I<br />
counselled instead of focusing on the problem or<br />
s<strong>it</strong>uation <strong>it</strong>self.<br />
The number of people getting infected by HIV<br />
is increasing year after year and the most<br />
vulnerable are young people. As a univers<strong>it</strong>y, <strong>it</strong><br />
is a prior<strong>it</strong>y for us <strong>to</strong> deal w<strong>it</strong>h the issue head on<br />
since we are in charge of young people in this<br />
vulnerable age group.<br />
Programma Alerta was in<strong>it</strong>iated in 1992 through<br />
the leadership of the late Dr. Monica Cornejo,<br />
a professor at the Univers<strong>it</strong>y of Valparaiso. I<br />
joined the programme in 2002 as they began<br />
preparations for events <strong>to</strong> commemorate <strong>World</strong><br />
AIDS Day. In preparation for the main event, we<br />
organised weekly meetings w<strong>it</strong>h guest speakers,<br />
group activ<strong>it</strong>ies, and vis<strong>it</strong>s <strong>to</strong> other univers<strong>it</strong>y<br />
groups working on the same issue. W<strong>it</strong>h other<br />
students, we shared our life experiences,<br />
behaviour changes in light of HIV and AIDS,<br />
and our feelings and thoughts on the preventive<br />
training programmes we were involved w<strong>it</strong>h.<br />
32<br />
At the end of the school<br />
year, we select forty<br />
students from each<br />
univers<strong>it</strong>y <strong>to</strong> become<br />
mon<strong>it</strong>ors, ten of whom<br />
are given active roles<br />
in the programme.<br />
Every year, these<br />
mon<strong>it</strong>ors work w<strong>it</strong>h<br />
at least four schools<br />
w<strong>it</strong>h approximately<br />
50 students in each<br />
class, reaching over<br />
200 students. A mon<strong>it</strong>or<br />
is required <strong>to</strong> be an<br />
active agent among the<br />
students, using the skills<br />
learnt during training<br />
<strong>to</strong> sens<strong>it</strong>ize fellow<br />
students on HIV and<br />
AIDS issues. However,<br />
participation is low because of academic<br />
responsibil<strong>it</strong>ies.<br />
We do not ask the mon<strong>it</strong>ors or other participants<br />
their HIV status. We realise <strong>it</strong> is a personal<br />
decision <strong>to</strong> disclose one’s HIV status, but if a<br />
student is open about being HIV pos<strong>it</strong>ive, we<br />
provide all the information we have and we<br />
support them psychologically and give medical<br />
orientation.<br />
Our main message is <strong>to</strong> make students aware<br />
that anybody can get infected if they do not take<br />
preventative measures. Young people must<br />
be more responsible regardless of their sexual<br />
orientation, socio-economic background or<br />
educational level.<br />
Born: 1976<br />
Country: Chile<br />
Organisation:<br />
Programma Alerta<br />
Campaigns for: HIV<br />
awareness building<br />
among young people
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Nakibuule Sylvia<br />
I educate people from all walks of life about my status<br />
and pos<strong>it</strong>ive living. I want them <strong>to</strong> learn so that they<br />
don’t follow my path.<br />
I am 27 years old and living pos<strong>it</strong>ively w<strong>it</strong>h HIV. I<br />
have four children, three of whom I had w<strong>it</strong>h my<br />
first husband.<br />
I dropped out of school in 1992, in my senior<br />
year, when I was 14 years old. My father, who<br />
has 16 children and two wives <strong>to</strong> look after,<br />
couldn’t afford <strong>to</strong> pay our school fees. Our family<br />
was a typical poverty stricken one. Over 10 of<br />
us were <strong>to</strong>ld <strong>to</strong> drop out after our father was laid<br />
off from his job and there was no other income<br />
generating activ<strong>it</strong>y <strong>to</strong> keep us in school. Those in<br />
lower primary were spared since their fees were<br />
much lower. The rest of my siblings who dropped<br />
out of school began looking after themselves by<br />
fetching water for people who paid them; and<br />
all the girls got married <strong>to</strong> the village boys and<br />
men. The man I got married <strong>to</strong> was a friend of my<br />
brothers and both my parents knew him since he<br />
always came home <strong>to</strong> vis<strong>it</strong>. He was a fisherman.<br />
I was 15 years old when my parents married me<br />
off; Robert was 20. This was in 1993. We didn’t<br />
have an official function; he only came home<br />
for my parents and family <strong>to</strong> say goodbye and<br />
<strong>to</strong> caution him <strong>to</strong> look after me well. He didn’t<br />
pay any dowry, but my family asked him and his<br />
family for ongoing financial assistance.<br />
I had my first three children from this marriage.<br />
However, in 1999 when my third child was only<br />
a month old, my husband died in a mo<strong>to</strong>rcycle<br />
accident. I was left w<strong>it</strong>h nothing. We didn’t have<br />
any tangible assets; we only had household<br />
property, which was shared by in-laws. I had<br />
three children <strong>to</strong> take care of and my parents<br />
back home were looking <strong>to</strong> me for their upkeep.<br />
Being a housewife and a young girl, I had <strong>to</strong> go<br />
back <strong>to</strong> the village where my parents lived.<br />
In the village, life was so difficult that we barely<br />
had soap <strong>to</strong> wash the children’s clothes. We had<br />
bananas in the gardens, so I decided <strong>to</strong> sell them<br />
in Kampala, the cap<strong>it</strong>al of Uganda. I used the<br />
33
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
money I made for transport back <strong>to</strong> the village<br />
<strong>to</strong> bring more bananas, and w<strong>it</strong>h time and some<br />
l<strong>it</strong>tle prof<strong>it</strong>, I bought other <strong>it</strong>ems like pota<strong>to</strong>es,<br />
chapattis and fish, enlarging my s<strong>to</strong>ck by the<br />
roadside.<br />
Among my regular clients was a taxi driver, who<br />
proposed <strong>to</strong> me. I accepted, as my business<br />
needed more cap<strong>it</strong>al, which he promised <strong>to</strong><br />
provide. I thought I had h<strong>it</strong> the jackpot; my<br />
business would grow, since I had a sponsor. I had<br />
bigger plans, like becoming a businesswoman.<br />
I knew I would soon be able <strong>to</strong> solve all my<br />
children’s problems and pay for school for my<br />
younger brothers and sisters, who were still in the<br />
village. The l<strong>it</strong>tle money he gave me attracted me<br />
<strong>to</strong> him.<br />
In January 2001, after a few months of courtship,<br />
he suggested that we live <strong>to</strong>gether. This would<br />
help me save some money <strong>to</strong> send <strong>to</strong> the village<br />
<strong>to</strong> take care of the children’s needs. After two<br />
months of living <strong>to</strong>gether, he s<strong>to</strong>pped me from<br />
working, promising <strong>to</strong> take care of all my needs<br />
and those of my children back in the village. I<br />
didn’t like the idea of s<strong>to</strong>pping work but I had<br />
already comm<strong>it</strong>ted <strong>myself</strong>. He hadn’t introduced<br />
himself <strong>to</strong> my parents, so he didn’t pay any<br />
dowry. He was over 48 years old when we joined<br />
houses. In December 2001, I gave birth <strong>to</strong> a baby<br />
boy, who is three years and eight months old<br />
now.<br />
My partner’s major worry was that I would get <strong>to</strong><br />
know from other people about his HIV pos<strong>it</strong>ive<br />
status. He had been looking for someone <strong>to</strong> look<br />
after him during his sick days, which since he had<br />
lived long w<strong>it</strong>h the virus, he expected <strong>to</strong> come.<br />
In March 2002, he fell very ill and was bedridden<br />
for seven months. I became suspicious of<br />
his health. When he went for treatment, I<br />
checked around the house and eventually<br />
found a receipt from an organisation where<br />
they treat HIV pos<strong>it</strong>ive people. I got so scared<br />
and wondered what <strong>to</strong> do. I approached one<br />
of my relatives whom I knew was a member<br />
of this organisation. I showed her the receipt<br />
and she confirmed my suspicion. However, she<br />
counselled me and advised me <strong>to</strong> take things<br />
in a simple manner since <strong>it</strong> was likely that I was<br />
already infected. When my husband came back,<br />
I couldn’t find the right words <strong>to</strong> ask him about<br />
his status. I had heard that he was pos<strong>it</strong>ive from<br />
the neighbours, but I didn’t believe them since<br />
he had looked so healthy. Besides, we lived in<br />
a slum w<strong>it</strong>h so many idle people who will say<br />
anything about people.<br />
34<br />
For the seven months while he was bedridden,<br />
life was so trying. We had begun starving<br />
because he no longer worked and the l<strong>it</strong>tle we<br />
had was taken away by paying his medical bills.<br />
We decided <strong>to</strong> part<strong>it</strong>ion the house, staying in one<br />
room and finding tenants <strong>to</strong> pay for upkeep. They<br />
sometimes failed <strong>to</strong> pay but chasing them away<br />
didn’t make much difference, as new occupants<br />
were the same.<br />
The neighbours always gossiped and laughed at<br />
me. No one wanted <strong>to</strong> vis<strong>it</strong> us since my husband<br />
had Tuberculosis (TB) and <strong>it</strong> was believed that<br />
TB could be spread <strong>to</strong> others in your midst. Life<br />
seemed very unrealistic <strong>to</strong> me. I had less breast<br />
milk due <strong>to</strong> lack of food and <strong>to</strong>o much work<br />
w<strong>it</strong>hout rest. I always borrowed things from the<br />
nearby shops and got drugs on cred<strong>it</strong> from the<br />
nearby clinic. We accumulated debts. I didn’t<br />
want my parents <strong>to</strong> know about my “unknown”<br />
husband’s health.<br />
My mother always sent messages wondering<br />
what had happened <strong>to</strong> me since I wasn’t
Young women intervene in a world w<strong>it</strong>h AIDS<br />
communicating as I used <strong>to</strong>. My children always<br />
needed school fees, books and medication but I<br />
didn’t have a penny, so I couldn’t help. I put my<br />
parents <strong>to</strong> task since they had <strong>to</strong> plead w<strong>it</strong>h the<br />
school author<strong>it</strong>ies <strong>to</strong> allow the children <strong>to</strong> study<br />
and promised <strong>to</strong> pay as soon as we got the<br />
money.<br />
My partner’s family only came <strong>to</strong> collect the flour<br />
that we got from TASO and the cooking oil. They<br />
didn’t want <strong>to</strong> look after him and always asked<br />
why I didn’t just let him die. They complained that<br />
whenever he got so near his death, I called the<br />
doc<strong>to</strong>r. To them, he had no right <strong>to</strong> still breath<br />
since w<strong>it</strong>h AIDS <strong>it</strong> was a sure deal <strong>to</strong> die.<br />
On January 1, 2003, my present <strong>to</strong> my husband<br />
for the New Year was <strong>to</strong> ask him <strong>to</strong> give me<br />
money <strong>to</strong> go for a HIV test. I was very confident<br />
when telling him. I assured him that I knew he<br />
was sick and was getting treatment though he<br />
had never <strong>to</strong>ld me. This scared him so much<br />
that he agreed <strong>to</strong> give me money for the test.<br />
When I tested, the result was HIV pos<strong>it</strong>ive. When<br />
I showed him the result, he opened up and<br />
apologised for having spread the virus <strong>to</strong> me. He<br />
<strong>to</strong>ld me that he needed someone <strong>to</strong> take care of<br />
him. Being a Christian, I forgave him; after all I<br />
had already contracted the disease.<br />
The counsellor was very helpful. He referred me<br />
<strong>to</strong> many HIV care centres. I decided <strong>to</strong> join TASO<br />
on the 6th of January 2003. Before testing for<br />
HIV, I had l<strong>it</strong>tle knowledge about <strong>it</strong>. I knew that<br />
I would get <strong>it</strong> if I had sex w<strong>it</strong>h an HIV pos<strong>it</strong>ive<br />
person but because of my l<strong>it</strong>tle knowledge and<br />
lack of personal confidence, I never asked any<br />
man <strong>to</strong> go for a blood test before we had sex.<br />
In July 2003, my partner died. His relatives<br />
wanted <strong>to</strong> share everything, and the other women<br />
sent their children <strong>to</strong> me <strong>to</strong> look after because I<br />
was now staying in his house. Even <strong>to</strong>day, my inlaws<br />
collect the money from the tenants and only<br />
give me something once in a while when they<br />
feel like <strong>it</strong>.<br />
My counsellor at TASO, Swabrah Scovia, gave<br />
me all the necessary information about HIV<br />
and AIDS. She <strong>to</strong>ld me about the TASO drama<br />
group and how <strong>it</strong> could help me cope w<strong>it</strong>h the<br />
virus. I joined the group in July 2003. The drama<br />
group members were so good as they shared<br />
their experiences w<strong>it</strong>h me, and this made me<br />
appreciate that I wasn’t alone and could still<br />
live a happy life even w<strong>it</strong>h HIV. This is when I<br />
began disclosing my status. At first, <strong>it</strong> was scary.<br />
I didn’t want <strong>to</strong> tell everyone but my counsellor<br />
encouraged me, which helped me a lot and made<br />
my heart lighter. I now walk a free woman. No<br />
one gossips about me since everyone knows I<br />
am HIV pos<strong>it</strong>ive. I feel better than before I went<br />
public.<br />
I educate other people from all walks of life<br />
about my status and pos<strong>it</strong>ive living. I share my<br />
experience of living w<strong>it</strong>h HIV in villages, schools,<br />
organisations and companies. I want them <strong>to</strong><br />
learn so that they don’t follow my path.<br />
35
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
I am happy because of my openness. I<br />
always find people at my home who need my<br />
counselling. The major<strong>it</strong>y of them wonder how<br />
I live as a widow w<strong>it</strong>h four children <strong>to</strong> take care<br />
of. Many are HIV pos<strong>it</strong>ive and seek advice about<br />
how they can live like me. I always feel proud <strong>to</strong><br />
help others cope w<strong>it</strong>h the disease.<br />
I joined the National Association of Women<br />
Living w<strong>it</strong>h HIV and AIDS, where we help<br />
pos<strong>it</strong>ive women gain courage <strong>to</strong> live pos<strong>it</strong>ively.<br />
We also teach each other how <strong>to</strong> cook and<br />
weave mats and baskets, and talk about our<br />
challenges as African women, and how <strong>to</strong><br />
address these. We learn how <strong>to</strong> wr<strong>it</strong>e wills and<br />
memory books. I haven’t yet learnt enough<br />
<strong>to</strong> wr<strong>it</strong>e these but I hope <strong>to</strong> once I master the<br />
necessary skills.<br />
I am also an active member of the Uganda Youth<br />
Pos<strong>it</strong>ives (UYP). This is a club of people up <strong>to</strong><br />
the age of 30. Through the club we teach the<br />
youth, both affected and infected, about the need<br />
<strong>to</strong> abstain from sex, and <strong>to</strong> those who cannot,<br />
<strong>to</strong> use condoms. We also encourage them <strong>to</strong><br />
use the opportun<strong>it</strong>ies of being in school if they<br />
still have a chance. We advise them <strong>to</strong> always<br />
test w<strong>it</strong>h their partners, three times in gaps of<br />
six months before they engage in sex, and also<br />
<strong>to</strong> be fa<strong>it</strong>hful <strong>to</strong> each other because <strong>it</strong> is the key<br />
<strong>to</strong> living a healthy life. We also encourage them<br />
<strong>to</strong> give other people information about HIV and<br />
AIDS and assistance <strong>to</strong> the sick. This is a new<br />
club and <strong>it</strong> is basically for information sharing<br />
purposes.<br />
I am currently making local hand bongos,<br />
necklaces and other trad<strong>it</strong>ional ladies’ jewellery<br />
from which I earn a living. I am looking around for<br />
a job but nothing has yet come my way. However,<br />
I am pos<strong>it</strong>ive about life.<br />
All my children are in school. The first three<br />
stay w<strong>it</strong>h my mother in the village. The last one<br />
is staying w<strong>it</strong>h my paternal aunt in Kawempe. I<br />
want my children <strong>to</strong> study up <strong>to</strong> univers<strong>it</strong>y and<br />
get better jobs, but most importantly I want them<br />
<strong>to</strong> make informed decisions because I believe<br />
that if I had studied, I would have been able <strong>to</strong><br />
have enough information about HIV and make<br />
informed decisions. I want them <strong>to</strong> be in good<br />
schools but I have no money <strong>to</strong> pay for this.<br />
Nevertheless, I will try my best as long as I am<br />
living <strong>to</strong> give them an education.<br />
36<br />
Born: 1978<br />
Country: Uganda<br />
Organisation:<br />
National Association<br />
of Women Living<br />
w<strong>it</strong>h HIV and AIDS,<br />
Uganda Youth<br />
Pos<strong>it</strong>ives (UYP), TASO<br />
(The AIDS Support<br />
Organisation)<br />
Campaigns for:<br />
Voluntary Counselling<br />
and Testing (VCT),<br />
pos<strong>it</strong>ive living
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Nastassia Ladzik<br />
My background on HIV prevention started w<strong>it</strong>h raising<br />
my own awareness, which helped me <strong>to</strong> overcome<br />
fears and stereotypes on HIV issues. I worked on<br />
building my self confidence and my abil<strong>it</strong>y <strong>to</strong> determine<br />
my own path in life.<br />
My name is Nastassia Ladzik, I am a 24-year-old<br />
Belarusian woman. I have a Bachelor degree<br />
in pedagogic sciences and have specialised in<br />
social work. I am the coordina<strong>to</strong>r of the project<br />
“Counteracting the Spread of HIV and AIDS<br />
among young people in the Republic of Belarus”.<br />
I have been a <strong>YWCA</strong> of Belarus volunteer<br />
since 2002 and became a member in 2003.<br />
Previously, I was the Assistant Project Manager<br />
on Prevention and Education of the Programme<br />
“La Strada - Belarus: Prevention of trafficking<br />
of women in Central and Eastern Europe”, and<br />
a consultant on the hotline “La Strada”. I am<br />
experienced in providing women w<strong>it</strong>h social<br />
consultation on the risks of being trafficked,<br />
the rules of how <strong>to</strong> protect oneself abroad,<br />
international marriages, jobs and studies abroad.<br />
My first encounter w<strong>it</strong>h HIV and AIDS was at the<br />
age of 18 when I had various fears connected<br />
<strong>to</strong> <strong>it</strong>, such as being infected, taking a HIV test,<br />
and so on. I think I was mainly afraid because<br />
I was young and had very l<strong>it</strong>tle knowledge. My<br />
background on HIV prevention started w<strong>it</strong>h<br />
raising my own awareness. This helped me<br />
overcome my fears and stereotypes on HIV<br />
issues. I worked on building my self confidence<br />
and my abil<strong>it</strong>y <strong>to</strong> determine my own path in life.<br />
I found information on the Internet, in books and<br />
at a centre led by univers<strong>it</strong>y staff and students,<br />
which provided useful information on HIV and<br />
AIDS for young leaders.<br />
During 1996 - 1997, the HIV infection rate was<br />
increasing. At that time <strong>it</strong> was considered <strong>to</strong> be<br />
a disease of potential risk groups (gay men, sex<br />
workers and drug users). The age group that<br />
had the highest infection rate was those 15-29<br />
years old. Questions concerning HIV in Belarus<br />
were relatively new and there were no education<br />
programmes on prevention in secondary and<br />
high schools. Furthermore, obliga<strong>to</strong>ry courses<br />
for senior pupils on healthy lifestyles and<br />
reproductive health were scarce. Most people<br />
in this age group, therefore, did not have<br />
necessary knowledge about the causes, ways<br />
of transmission and consequences of HIV and<br />
AIDS, and did not practice responsible sexual<br />
behaviour.<br />
In 2001-2002 I participated in a peer education<br />
training programme organised by UNAIDS, and<br />
led by specialists in the country and international<br />
experts from the Belarusian Republic Epidemic<br />
Centre. In 2003, I began developing a project <strong>to</strong><br />
counteract the spread of HIV and AIDS among<br />
young people, and started implementing <strong>it</strong> in<br />
September 2004. This project, which was an<br />
individual in<strong>it</strong>iative, is the result of complex<br />
sociological research, combined w<strong>it</strong>h information<br />
and educational work. The research is aimed at<br />
studying the level of knowledge of the Belarusian<br />
youth on the causes, ways of transmission and<br />
impact of HIV and AIDS on their lives. It is also<br />
<strong>to</strong> know the infection rate through drug addiction<br />
and sexually transm<strong>it</strong>ted infections, and the<br />
current epidemical s<strong>it</strong>uation and HIV prevention<br />
measures taken in Belarus. We looked at the<br />
problems and personal experiences of people<br />
living w<strong>it</strong>h HIV and also the problem of coverage<br />
and HIV and AIDS presentation methods in the<br />
Belarusian mass media. Four trainers and a<br />
sociologist are part of this project. In Oc<strong>to</strong>ber<br />
2005 new ideas arose, such as translating<br />
the <strong>World</strong> <strong>YWCA</strong> production ‘Women Are’ in<strong>to</strong><br />
Russian and distributing copies <strong>to</strong> other NGOs.<br />
We believe <strong>it</strong> will be useful <strong>to</strong> promote networking<br />
w<strong>it</strong>h other NGOs.<br />
37
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
This project is funded through the <strong>World</strong> <strong>YWCA</strong><br />
women and development fund, and the Ministry<br />
of Social Sphere and Labour. The Republic<br />
Epidemical Centre also supports us.<br />
During the first year of project implementation<br />
our team carried out 20 training sessions for<br />
400 pupils and students of special, professional<br />
and higher education establishments in various<br />
regions of Belarus, w<strong>it</strong>h the aim <strong>to</strong> impart<br />
necessary skills and information on responsible<br />
sexual behaviour. The target group is young<br />
women and men from 14-29 years old. I also<br />
<strong>to</strong>ok the in<strong>it</strong>iative <strong>to</strong> hold an educational training<br />
session for children in the orphanage, because<br />
orphans are those who need true information on<br />
HIV and AIDS the most, and should learn about<br />
safe behaviour. The average age group among<br />
the orphans is 13-16 and we also provide them<br />
w<strong>it</strong>h information materials. All our trainees are<br />
encouraged <strong>to</strong> then train others. We keep in<br />
contact w<strong>it</strong>h the facil<strong>it</strong>a<strong>to</strong>rs and their work.<br />
I work w<strong>it</strong>h the commun<strong>it</strong>y in different ways: w<strong>it</strong>h<br />
young people <strong>to</strong> raise awareness about HIV and<br />
AIDS and w<strong>it</strong>h women and men so that they may<br />
benef<strong>it</strong> from the project through printed materials.<br />
We link w<strong>it</strong>h local networks and promote the<br />
exchange of experience of non-governmental<br />
organisations such as the Pos<strong>it</strong>ive movement,<br />
and governmental organisations, working w<strong>it</strong>h<br />
youth on HIV and AIDS prevention in all regions<br />
of Belarus.<br />
Participants of the project have become more<br />
aware and involved, and have taken leadership<br />
roles in the <strong>YWCA</strong>. One of the objectives of the<br />
project is <strong>to</strong> develop social activ<strong>it</strong>ies for young<br />
women and men, as they are those who are<br />
most vulnerable. In the framework of the project,<br />
they received new information on HIV and AIDS<br />
and were assisted in acquiring necessary skills<br />
and responsible sexual behaviour. They now<br />
have information about the <strong>YWCA</strong> movement<br />
and understand <strong>it</strong>s core work and usefulness in<br />
society.<br />
My personal experience, the above, as well as<br />
the analysis of the epidemic’s s<strong>it</strong>uation in Belarus<br />
demonstrate the l<strong>it</strong>tle knowledge of youth on<br />
HIV and AIDS. Information <strong>to</strong> and education of<br />
Belarusian youth on HIV and AIDS still remains<br />
unique, and is the main means of HIV prevention<br />
where there is a lack of vaccines and no effective<br />
treatment. Especially as the major<strong>it</strong>y of young<br />
people who contract HIV are girls. <strong>If</strong> more girls<br />
were educated, this would empower them and<br />
certainly secure their future. In order <strong>to</strong> ensure<br />
38<br />
that our objective is reached, we give them<br />
brochures and booklets and evaluate each<br />
training session w<strong>it</strong>h a final questionnaire.<br />
I participated and won the 2nd place in the<br />
countrywide UNHCR compet<strong>it</strong>ion among<br />
graduate and post-graduate students on the best<br />
academic work on refugee, migrant and <strong>to</strong>lerance<br />
issues.<br />
Born: 1981<br />
Country: Belarus<br />
Organisations: <strong>YWCA</strong> of<br />
Belarus<br />
Campaigns for: Prevention<br />
of HIV and AIDS among<br />
young people.
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Mphatso Tambala<br />
As women living w<strong>it</strong>h HIV and AIDS, we recognised that<br />
there is need <strong>to</strong> do something <strong>to</strong> improve our lives for<br />
the better and improve our families’ living standards<br />
through income generating activ<strong>it</strong>ies.<br />
My name is Mphatso Tambala, a 29-yearold<br />
woman from Malawi. I started having an<br />
interest in HIV and AIDS work in Oc<strong>to</strong>ber<br />
1998. That Oc<strong>to</strong>ber, I had been involved in a<br />
lot of Advocacy work on the rights of women<br />
and children infected and affected by HIV and<br />
AIDS. I joined the Un<strong>it</strong>ed Nations Development<br />
Programme (UNDP) National Un<strong>it</strong>ed Nations<br />
Volunteer GIPA project. In my capac<strong>it</strong>y as a UN<br />
Volunteer I have served as HIV and AIDS project<br />
Coordina<strong>to</strong>r for the workplace programme in<br />
ADMARC Medical Services, promoting the<br />
greater involvement of PLWHA (GIPA). I was<br />
later hired as the ADMARC ADDS LIFE Project<br />
Coordina<strong>to</strong>r. My responsibil<strong>it</strong>ies included<br />
facil<strong>it</strong>ating the establishment of home based<br />
care (HBC) and PLWHA support groups, and<br />
formulating HIV and AIDS workplace policies<br />
for ADMARC and <strong>it</strong>s subsidiary companies.<br />
I supervised the VCT Centre and Outreach<br />
Services for ADMARC, and set up youth clubs. I<br />
was responsible for resource mobilisation for the<br />
project which <strong>to</strong> date is one of the successful<br />
workplace HIV and AIDS projects in Malawi.<br />
As I became more involved in HIV and AIDS<br />
programmes, I began <strong>to</strong> realise that the issues<br />
affecting women and girls living w<strong>it</strong>h HIV and<br />
AIDS were not being adequately addressed<br />
hence the need <strong>to</strong> established a network of<br />
women and girls living w<strong>it</strong>h HIV and AIDS in<br />
Malawi.<br />
At this time I was serving as a Regional Support<br />
Officer for the Malawi Network of AIDS service<br />
Organisation where I was responsible for building<br />
the capac<strong>it</strong>y of AIDS service organisations<br />
and commun<strong>it</strong>y based organisation. In 2005<br />
January I was recommended <strong>to</strong> work for Malawi<br />
Network of People living w<strong>it</strong>h HIV (MANET+) as<br />
a Programme Officer Capac<strong>it</strong>y Building. I also<br />
served on the board as the treasurer.<br />
In December 2000 I attended the African Heads<br />
Of States Development Forum in Addis Ababa<br />
Ethiopia where I was part of the Malawian<br />
Presidents Delegation.<br />
I learnt of the roles of African leaders and how<br />
they were responding <strong>to</strong> the epidemic and their<br />
comm<strong>it</strong>ment <strong>to</strong> the work. I made a presentation<br />
of the roles of young people and attended a lot<br />
of meetings, which I had learnt a lot on how <strong>to</strong><br />
address issues affecting people living w<strong>it</strong>h HIV<br />
and AIDS.<br />
I have been involved at a national level<br />
advocating for policy change. I actively <strong>to</strong>ok part<br />
in defining the National HIV and AIDS Policy,<br />
in particular guidelines for orphans, treatment<br />
accessibil<strong>it</strong>y and workplace policy.<br />
In August 2002, I joined the Southern Regional<br />
Coordinating AIDS Service Organisations of the<br />
Malawi Network of AIDS Service Organisations<br />
(MANASO). My task was <strong>to</strong> promote networking<br />
activ<strong>it</strong>ies and capac<strong>it</strong>y building among commun<strong>it</strong>y<br />
based organisations. This included training<br />
CBOs in proposal wr<strong>it</strong>ing, pos<strong>it</strong>ive living and<br />
survival skills, HIV and nutr<strong>it</strong>ion, project planning<br />
and management. I also provided technical<br />
support, mobilised resources and mon<strong>it</strong>ored and<br />
evaluated CBO programmes.<br />
When my husband died in 2003, my in-laws,<br />
who are managing our properties, promised <strong>to</strong><br />
give me a monthly income so that I could look<br />
after our two sons, but <strong>it</strong> has been qu<strong>it</strong>e a big<br />
39
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
challenge. Many women and children are facing<br />
difficult s<strong>it</strong>uations. It was this realisation of the<br />
hardship of women and young girls infected and<br />
affected by HIV and AIDS that prompted me<br />
<strong>to</strong> establish a specific Network of HIV pos<strong>it</strong>ive<br />
women. Members would meet rotationally at<br />
each other’s homes realising that as women<br />
living w<strong>it</strong>h HIV, there is need <strong>to</strong> help each other<br />
w<strong>it</strong>h both psychosocial and physical support<br />
and speak out on issues through Advocacy and<br />
empowerment. As women living w<strong>it</strong>h HIV, we<br />
needed <strong>to</strong> do something <strong>to</strong> change our lives<br />
for the better and improve our families’ living<br />
standards through income generating activ<strong>it</strong>ies.<br />
In add<strong>it</strong>ion, members wanted <strong>to</strong> work <strong>to</strong>gether<br />
<strong>to</strong> overcome stigma and discrimination in our<br />
commun<strong>it</strong>y in an attempt <strong>to</strong> curb the spread of<br />
HIV among young people.<br />
Pos<strong>it</strong>ive Women in Action and Development<br />
(PWAD) was established <strong>to</strong> increase awareness<br />
of social, sexual and reproductive health rights<br />
and treatment l<strong>it</strong>eracy of women and girls<br />
infected and affected by HIV and AIDS. Our<br />
country has a women’s rights and empowerment<br />
policy but <strong>it</strong> is important <strong>to</strong> have <strong>it</strong> translated<br />
in<strong>to</strong> law. Currently the network and other stake<br />
holders in women rights advocacy are lobbying<br />
the Parliamentary Comm<strong>it</strong>tee on Gender and<br />
AIDS w<strong>it</strong>h the Centre for Human Rights. As<br />
members of the International Commun<strong>it</strong>y of<br />
Women living w<strong>it</strong>h HIV and AIDS (ICW), we<br />
receive empowering information materials,<br />
which help our network in advocacy and women<br />
empowerment skills. The Pos<strong>it</strong>ive Women’s<br />
Survival K<strong>it</strong>, publications on pos<strong>it</strong>ive women’s<br />
rights and on Microbicides empowers women<br />
<strong>to</strong> effectively discuss needs and influence the<br />
advocacy plan.<br />
40<br />
I founded the PWAD Network in Malawi after<br />
attending the Young Women’s Dialogue (YWD)<br />
in Durban, South Africa (April 2004) organized<br />
by ICW. The issues that were raised at the YWD<br />
and WHO’s 3 by 5 planning meeting challenged<br />
me <strong>to</strong> become more familiar w<strong>it</strong>h issues facing<br />
pos<strong>it</strong>ive women and girls in Malawi and find<br />
ways <strong>to</strong> address them. After the YWD, I was<br />
sponsored by the Un<strong>it</strong>ed Nations Development<br />
Fund for Women (UNIFEM) <strong>to</strong> attend a women’s<br />
exchange and empowerment study <strong>to</strong>ur in<br />
South Africa. This gave me an opportun<strong>it</strong>y <strong>to</strong><br />
learn from others who are involved in women’s<br />
organisations and doing work concerning women<br />
and AIDS. Due <strong>to</strong> the problems we are going<br />
through, I realised that I should make my voice<br />
heard for the rights of women and girls living w<strong>it</strong>h<br />
HIV and AIDS in my country.<br />
Today, PWAD is a registered network of women<br />
living w<strong>it</strong>h HIV and AIDS in Malawi, w<strong>it</strong>h 9<br />
branches around the country. The Roman<br />
Catholic Church in Lilongwe gave us some office<br />
space <strong>to</strong> use until we are able <strong>to</strong> get a place of<br />
our own. The other branches are meeting under<br />
a tree or in trad<strong>it</strong>ional author<strong>it</strong>y premises and<br />
nearest schools or churches. Our organisation<br />
has no funding for operational costs or for the<br />
women’s programmes; however, we received<br />
US$ 4,000 from the Global Fund <strong>to</strong> do home<br />
based care (HBC) training and <strong>to</strong> buy HBC k<strong>it</strong>s<br />
and US$15,000 for the orphans and vulnerable<br />
children programme and widows economic<br />
empowerment. We have wr<strong>it</strong>ten several<br />
proposals for our project and our main focus is<br />
advocacy, empowerment, capac<strong>it</strong>y building and<br />
psychosocial support. W<strong>it</strong>h lim<strong>it</strong>ed resource, the<br />
women are producing handicrafts <strong>to</strong> support their<br />
own activ<strong>it</strong>ies.
Young women intervene in a world w<strong>it</strong>h AIDS<br />
PWAD now has 2050 women living w<strong>it</strong>h HIV and<br />
AIDS and 27 orphan headed families that are<br />
registered w<strong>it</strong>h the group. 80% of the support<br />
group members are widows and are HIV pos<strong>it</strong>ive,<br />
while the remaining 20% are women who have<br />
been abandoned or abused by their husbands<br />
after their diagnosis. We promote voluntary<br />
counselling and testing among women and girls,<br />
and provide care and support <strong>to</strong> reduce the<br />
pain and suffering of women, girls, and orphans<br />
already affected by this epidemic.<br />
Since June 2004, we have been referring our<br />
patients <strong>to</strong> the district hosp<strong>it</strong>als as they manage<br />
opportunistic infections (OIs) and provide free<br />
anti-retroviral (ARV) therapy. We are faced w<strong>it</strong>h<br />
many challenges especially transport problems.<br />
Walking <strong>to</strong> the hosp<strong>it</strong>al is the only option for<br />
some of our clients; the nearest hosp<strong>it</strong>al for<br />
some is 18-20 miles away. In Malawi, 85,000<br />
PLWHA need <strong>to</strong> start treatment immediately but<br />
the hosp<strong>it</strong>als are only enrolling 150 patients per<br />
month. Most women do not have the means <strong>to</strong><br />
travel, and therefore more men are benef<strong>it</strong>ing<br />
from treatment. We support our clients w<strong>it</strong>h<br />
counselling and referrals, behavioural change<br />
education, group therapy, treatment l<strong>it</strong>eracy,<br />
nutr<strong>it</strong>ion and herbal treatment.<br />
I facil<strong>it</strong>ate Memory Book wr<strong>it</strong>ing workshops. I<br />
teach the women how <strong>to</strong> put <strong>to</strong>gether a book<br />
of memories incorporating advice, important<br />
information and fond memories <strong>to</strong> leave behind<br />
for their children. We have trained a <strong>to</strong>tal of 300<br />
women so far. We preach the word of wisdom,<br />
pos<strong>it</strong>ive living, survival skills, ABC messages,<br />
advocacy skills and treatment l<strong>it</strong>eracy <strong>to</strong> women<br />
and girls infected w<strong>it</strong>h HIV and AIDS.<br />
I was once a member of the Global Fund Country<br />
Coordinating Mechanism (CCM) in Malawi. I<br />
have made presentations <strong>to</strong> policy maker’s<br />
forums and meetings on the issues that affect<br />
women and girls in my country.<br />
Postscript:<br />
Mphatso is currently a third year student at<br />
the Univers<strong>it</strong>y of Namibia, studying <strong>to</strong>wards a<br />
Degree in HIV and AIDS Management through<br />
Share <strong>World</strong> Inst<strong>it</strong>ute. She holds a Diploma<br />
in Marketing Management from SAIBM South<br />
Africa, a Certificate in Professional Counselling<br />
from K.A.P.C Nairobi, Kenya, and a Certificate in<br />
Commun<strong>it</strong>y Care on HIV and AIDS from F.A.C.T<br />
Mutare, Zimbabwe and a Diploma in Social<br />
Development studies form Kenya. Her vision is <strong>to</strong><br />
have a Masters Degree in Public Health or Social<br />
Science.<br />
Born: 1976<br />
Country: Malawi<br />
Organisations: ICW, Pos<strong>it</strong>ive Women in Action<br />
and Development (PWAD)<br />
Campaigns for: Women’s social, sexual,<br />
reproductive health rights, self support for<br />
women and widows affected by HIV and AIDS,<br />
greater involvement of PLWHA at national and<br />
corporate level<br />
41
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
TOOL BOX<br />
Sharing Knowledge<br />
HIV and AIDS Education<br />
The annual increase of new HIV infections annually shows that current<br />
prevention messages are not as effective as we would like them <strong>to</strong> be.<br />
For current information on what is happening globally, have a look at the<br />
UNAIDS December 2005 AIDS epidemic update www.unaids.org<br />
We live in a world where the people who need the information and<br />
education are not receiving <strong>it</strong>. Access <strong>to</strong> education and information is a<br />
human right and must <strong>to</strong> be available <strong>to</strong> all. Anyone, irrespective of who<br />
they are, can become infected w<strong>it</strong>h HIV.<br />
Help prevent new infections<br />
Knowledge is power. <strong>If</strong> you know your HIV status, you can take action<br />
through behaviour change and making the right decisions. Due <strong>to</strong> all kinds<br />
of fear, most of us are unaware of our HIV status. We pretend that <strong>it</strong>’s not<br />
a problem and perpetuate the ‘them and us’ s<strong>it</strong>uation w<strong>it</strong>h comments such<br />
as ‘things like this do not happen <strong>to</strong> people like me.’ You can start just<br />
by talking about issues relating <strong>to</strong> HIV and AIDS. What <strong>it</strong> is, how <strong>it</strong> is/isn’t<br />
transm<strong>it</strong>ted, and how people can protect themselves from new infections.<br />
Information is useless if we do not put <strong>it</strong> in<strong>to</strong> action. Gandhi said “Be the<br />
change you want <strong>to</strong> see.” Teach people how <strong>to</strong> use information practically<br />
by being an example for people in your commun<strong>it</strong>y <strong>to</strong> follow.<br />
• Suggest and practice safer sex. Find out how people can access condoms<br />
and make sure they know how <strong>to</strong> use them.<br />
• <strong>If</strong> you are injecting drugs use clean needles and never share!<br />
42<br />
Promote pos<strong>it</strong>ive living by:<br />
• Finding someone you can talk <strong>to</strong> and confide in. Being diagnosed HIV<br />
pos<strong>it</strong>ive is hard <strong>to</strong> deal w<strong>it</strong>h all alone<br />
• Getting informed about HIV and AIDS<br />
• Speaking <strong>to</strong> other HIV pos<strong>it</strong>ive people and seeing how they have<br />
managed <strong>to</strong> keep a pos<strong>it</strong>ive outlook on life<br />
• Taking responsibil<strong>it</strong>y for your health. We tend <strong>to</strong> blame others for<br />
s<strong>it</strong>uations we find ourselves in, but often put ourselves at risk. The issue<br />
is not how or where you contracted HIV, but accepting that you are HIV<br />
pos<strong>it</strong>ive<br />
• Being checked for tuberculosis (TB) and Sexually Transm<strong>it</strong>ted Diseases<br />
(STDs). In some countries TB accounts for more than half of AIDS-related
Young women intervene in a world w<strong>it</strong>h AIDS<br />
cond<strong>it</strong>ions, but the good news is that <strong>it</strong> is curable<br />
• Researching your treatment options. What trad<strong>it</strong>ional, western medicine<br />
or complementary therapies are available, accessible and will work for you<br />
• Planning a future and putting <strong>it</strong> in<strong>to</strong> action. An HIV pos<strong>it</strong>ive diagnosis does<br />
not mean that your life has <strong>to</strong> end. Set yourself goals, and start working<br />
<strong>to</strong>wards them<br />
• Expressing your feelings and dealing w<strong>it</strong>h your emotions. Anger, for<br />
example, can become destructive <strong>to</strong> your system if not well handled<br />
• Managing stress<br />
• Engaging in activ<strong>it</strong>ies you enjoy. Find a reason <strong>to</strong> live. Living w<strong>it</strong>h HIV may<br />
be a challenge, but you can also choose <strong>to</strong> live a very powerful life both<br />
mentally and emotionally<br />
• Staying f<strong>it</strong>. There is a direct relationship between health and f<strong>it</strong>ness.<br />
Exercise helps your state of mind, body and spir<strong>it</strong><br />
• Ending bad hab<strong>it</strong>s such as smoking and substance abuse, and starting <strong>to</strong><br />
respect your body. Change is a process that is never easy, but if you want<br />
<strong>to</strong> live a longer and healthier life start making changes that will enable you<br />
<strong>to</strong> do this<br />
• Disclosing your HIV pos<strong>it</strong>ive status only when you have accepted <strong>it</strong>, are<br />
ready and are well informed about HIV and AIDS<br />
• Having protected sex through consistent use of a condom so that you do<br />
not re-infect yourself or your partner<br />
• Trying as much as possible <strong>to</strong> ensure you have a balanced diet.<br />
Reduce stigma and discrimination<br />
Stigma and discrimination are often used in the same sentence, but if we<br />
look more closely, they have different meanings.<br />
“Stigma is not exactly the same as discrimination at least in terms of<br />
connotation. Stigma has an add<strong>it</strong>ional connotation <strong>to</strong> discrimination, namely<br />
of strong emotional rejection over and above structural inequ<strong>it</strong>y. ‘Stigma’<br />
is characterised by overt fear, whereas ‘discrimination’ is not always overt.<br />
We therefore propose that stigma is the extreme end of a discrimination<br />
continuum.”<br />
Taken from Self-stigma and HIV and AIDS by David Patient<br />
We can deal w<strong>it</strong>h stigma and discrimination by:<br />
• Finding out more about HIV and AIDS. <strong>If</strong> you are informed you will be<br />
able <strong>to</strong> correct people’s myths and misconceptions, usually the root cause<br />
of stigma. And don’t forget <strong>to</strong> look at your own beliefs and perceptions<br />
43
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
44<br />
• Listening <strong>to</strong> HIV pos<strong>it</strong>ive people who have dealt w<strong>it</strong>h stigma. We can<br />
learn from people’s first hand experiences regarding stigma. How stigma<br />
has changed their lives, what they would like people <strong>to</strong> know about living<br />
w<strong>it</strong>h HIV and AIDS, and how they would like <strong>to</strong> be viewed and treated<br />
• Supporting HIV pos<strong>it</strong>ive people. <strong>If</strong> we continue <strong>to</strong> stigmatise and<br />
discriminate against HIV pos<strong>it</strong>ive people, and if we alienate them, we are<br />
not preventing further HIV infections. We need <strong>to</strong> create a society in which<br />
people are not afraid <strong>to</strong> get tested and feel that they can be supported and<br />
loved irrespective of their HIV status. Most HIV infections occur among<br />
people who are unaware of their status and <strong>to</strong>o afraid <strong>to</strong> get tested<br />
• Watching your language. Most of us use terms and expressions related<br />
<strong>to</strong> HIV and AIDS that reinforce stigma. For example “victims, AIDS sufferers,<br />
AIDS patients’. We can avoid perpetuating stigma by avoiding these terms<br />
• Reacting <strong>to</strong> stigmatising material in the media. Wr<strong>it</strong>e, call or e-mail!<br />
Express your opinions and concerns and provide more acceptable<br />
information that journalists can use. The media can be an extremely<br />
powerful <strong>to</strong>ol in preventing further HIV infections and breaking down stigma<br />
and misconception about HIV and AIDS. It is imperative that we the general<br />
public and PLWAs inform and educate the media so that they do not<br />
continue <strong>to</strong> make the same mistakes<br />
• Speaking up about stigma. When you overhear someone abusing a<br />
term, for example ‘<strong>If</strong> you are promiscuous, you are likely <strong>to</strong> be infected w<strong>it</strong>h<br />
HIV’ give him or her the correct information and dispel the myth<br />
• Discussing HIV and AIDS. Talking openly about HIV is not something<br />
that comes naturally. Some people struggle <strong>to</strong> say the word AIDS and<br />
instead they refer <strong>to</strong> <strong>it</strong> as ‘the disease’ The more silent about HIV and AIDS<br />
we remain, the more people will continue <strong>to</strong> believe that <strong>it</strong> is shameful and<br />
needs <strong>to</strong> be hidden. Talking openly about stigma can also offer support <strong>to</strong><br />
people living w<strong>it</strong>h HIV and AIDS<br />
• Being aware of Self-Stigma. We always hear people talking about the<br />
discrimination and stigma that HIV pos<strong>it</strong>ive people experience from an<br />
outside source. Have we ever s<strong>to</strong>pped <strong>to</strong> look w<strong>it</strong>hin at the beliefs we carry<br />
around and hold as the truth? One of the most debil<strong>it</strong>ating issues around<br />
finding out that you are HIV pos<strong>it</strong>ive is that you suddenly think ‘Who will<br />
want <strong>to</strong> be w<strong>it</strong>h me now?’ ‘Am I going <strong>to</strong> live the rest of my life alone?’ We<br />
fear the rejection and the isolation and the ‘them and us’ scenario. Some<br />
people choose <strong>to</strong> be victims and some choose <strong>to</strong> create the lives they have<br />
always wanted. Don’t let anyone, not even HIV, dictate your life and how<br />
you live <strong>it</strong>. Remember people will treat you the way you see yourself. <strong>If</strong> you<br />
act like a victim, you will be treated like one.
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Care<br />
and<br />
Support<br />
45
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Constance Shumba<br />
Young women need <strong>to</strong> influence policy on HIV and AIDS.<br />
The emancipation of young women by strengthening<br />
participation in social movements and integrating<br />
gender concerns in creating supportive and enabling<br />
environments is key <strong>to</strong> the fight against HIV and AIDS.<br />
In 2000, I wrote an essay for the Parliament<br />
of Zimbabwe in which I clearly outlined that<br />
parliament is not just a ceremonial body but<br />
should enact laws that help curb HIV and AIDS.<br />
I received a provincial and national award for the<br />
best essay on parliament promoting democracy.<br />
It was at this stage that I began <strong>to</strong> realise that I<br />
had strong advocacy skills, which could increase<br />
my sphere of influence.<br />
I joined the <strong>YWCA</strong> in 1997, at the age of 15,<br />
and was immediately trained <strong>to</strong> become a<br />
peer educa<strong>to</strong>r on Family Health and HIV and<br />
AIDS. I was actively involved in peer education<br />
through my local branch Kadoma and was<br />
branch President for a while. During that time,<br />
I was elected <strong>to</strong> the National Youth Executive<br />
Comm<strong>it</strong>tee and in this capac<strong>it</strong>y I attended<br />
various youth trainings and meetings on HIV and<br />
AIDS, which helped me develop my skills and<br />
confidence in addressing this <strong>to</strong>pic.<br />
Over the years, the <strong>YWCA</strong> of Zimbabwe has been<br />
instrumental in shaping my destiny; my passion<br />
for HIV and AIDS work has increased since the<br />
time I became a peer educa<strong>to</strong>r, and propelled<br />
me <strong>to</strong> pursue a career. I now have a Bachelor of<br />
Science in Health Education and Promotion from<br />
the Univers<strong>it</strong>y of Zimbabwe. The course <strong>it</strong>self<br />
was ideal as <strong>it</strong> recognised that improvements<br />
in family and commun<strong>it</strong>y practices are effective<br />
ways of reducing the spread of HIV and AIDS and<br />
dispelling myths surrounding <strong>it</strong>. It also helped <strong>to</strong><br />
better equip me on issues surrounding commun<strong>it</strong>y<br />
involvement, commun<strong>it</strong>y participation and<br />
sustainabil<strong>it</strong>y of HIV and AIDS programmes.<br />
During my time at the <strong>YWCA</strong>, we organised one<br />
day peer education workshops for members and<br />
46<br />
youth from the commun<strong>it</strong>y. I was able <strong>to</strong> partner<br />
w<strong>it</strong>h members of Youth Against AIDS, who also<br />
joined our workshops.<br />
Through the <strong>YWCA</strong> I joined the Africa Youth<br />
In<strong>it</strong>iative Network (AYINET) and I am currently the<br />
chair of the Zimbabwe Chapter. In AYINET, I am<br />
involved in advocacy and work w<strong>it</strong>h youth from<br />
diverse socioeconomic and cultural backgrounds,<br />
raising consciousness through some of the youth<br />
and development talks we hold.<br />
At AYINET, we are primarily concerned w<strong>it</strong>h<br />
the issues of social justice, gender and public<br />
participation in HIV and AIDS. This makes up<br />
part of the strategic plan we are pushing <strong>to</strong> be<br />
included in the Parliamentary Portfolio Comm<strong>it</strong>tee<br />
on Health. Another <strong>it</strong>em on our agenda is<br />
<strong>to</strong> put forward our recommendations on the<br />
implementation of a workplace HIV and AIDS<br />
policy for the private sec<strong>to</strong>r.<br />
In Oc<strong>to</strong>ber 2003, I joined the Ministry of Health<br />
and Child Welfare Head Office as an intern for<br />
a year in the Health Promotion Un<strong>it</strong>. During<br />
that time, I <strong>to</strong>ok part in planning, mon<strong>it</strong>oring<br />
and evaluating various programmes. I also<br />
participated in preparations for <strong>World</strong> AIDS Day<br />
and the AIDS Week campaign, <strong>to</strong>gether w<strong>it</strong>h<br />
the National AIDS Council, AIDS and TB Un<strong>it</strong>,<br />
and other stakeholders. During my internship,<br />
I worked as a member of the Information,<br />
Education and Communication (IEC) material<br />
design team for the <strong>World</strong> AIDS Campaign. My<br />
duties included facil<strong>it</strong>ating HIV and AIDS and<br />
TB national workshops for the training of Home<br />
Based Care (HBC) counsellors. I was also part<br />
of the Red Cross Steering Comm<strong>it</strong>tee for the<br />
National Commun<strong>it</strong>y and HBC Standards K<strong>it</strong>
Young women intervene in a world w<strong>it</strong>h AIDS<br />
launch, where I successfully suggested the<br />
chosen theme “Promoting and enhancing the<br />
qual<strong>it</strong>y of commun<strong>it</strong>y and home based care”.<br />
My internship w<strong>it</strong>h the Ministry of Health and<br />
Child Welfare provided me w<strong>it</strong>h an opportun<strong>it</strong>y <strong>to</strong><br />
network w<strong>it</strong>h other AIDS service organisations.<br />
I was able <strong>to</strong> work w<strong>it</strong>h the Zimbabwe Network<br />
for People Living w<strong>it</strong>h HIV and AIDS (ZNPP+) in<br />
their preparation for their biannual conference as<br />
a steering comm<strong>it</strong>tee member and chair of the<br />
communications sub comm<strong>it</strong>tee.<br />
I was involved in significant research on HIV<br />
and AIDS through the <strong>World</strong> Health Survey and<br />
Provincial Medical Direc<strong>to</strong>rate in the Midlands<br />
province and the Global Schools Health Survey<br />
in Harare. It was while I did research on the<br />
reproductive health needs of orphans and<br />
vulnerable children in Manicaland and Masvingo<br />
province in Zimbabwe that I realised that many<br />
children are being left orphaned and in vulnerable<br />
circumstances.<br />
As I realised the magn<strong>it</strong>ude of the problem of<br />
child headed families I was really burdened.<br />
Through my church, <strong>to</strong>gether w<strong>it</strong>h other young<br />
women, we mobilised <strong>to</strong> give provisions <strong>to</strong> a local<br />
orphanage. I, however, felt <strong>it</strong> was not enough.<br />
We needed <strong>to</strong> do more <strong>to</strong> help. So, I was ecstatic<br />
when the church decided <strong>to</strong> start an orphanage<br />
and <strong>to</strong>ok me on the Board of Trustees of Glory <strong>to</strong><br />
Glory Children’s Home. I became the children’s<br />
social welfare officer. I was elated. I am now able<br />
<strong>to</strong> take part in the decision making process, and<br />
at the same time, ensure that the needs of the<br />
children are met.<br />
Presently, the orphanage has ten school children<br />
- five girls and five boys. The children were<br />
orphaned as a result of HIV and AIDS, and<br />
though there are many challenges, <strong>it</strong> is uplifting<br />
<strong>to</strong> be able <strong>to</strong> give them more than just smiles<br />
and hugs. The s<strong>it</strong>uation demands more than just<br />
sympathy, <strong>it</strong> requires action. We need <strong>to</strong> take a<br />
step in fa<strong>it</strong>h <strong>to</strong> bring hope <strong>to</strong> children who will be<br />
the leaders of <strong>to</strong>morrow. And like one man said,<br />
‘It is our ethical responsibil<strong>it</strong>y <strong>to</strong> bring the greatest<br />
possible amount of happiness <strong>to</strong> those around<br />
us’.<br />
In April 2004, I attended the international<br />
steering comm<strong>it</strong>tee meeting for the Development<br />
of Anti-Retroviral Therapy (DART), the biggest<br />
clinical research ever carried out in Southern<br />
Africa. This helped me realise the need <strong>to</strong> be a<br />
treatment supporter in my commun<strong>it</strong>y. I learnt<br />
that providing treatment in hosp<strong>it</strong>als w<strong>it</strong>hout<br />
47
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
strong links <strong>to</strong> commun<strong>it</strong>y outreach weakens the<br />
link between prevention and care. I immediately<br />
put in<strong>to</strong> practice what I learnt; I began <strong>to</strong><br />
refer people <strong>to</strong> health centres and strongly<br />
encouraged people <strong>to</strong> take their medication as<br />
prescribed. I support in<strong>it</strong>iatives by local nongovernmental<br />
organisations that distribute<br />
food packs <strong>to</strong> those living w<strong>it</strong>h HIV and AIDS<br />
and promote pos<strong>it</strong>ive living through commun<strong>it</strong>y<br />
education.<br />
I participated in developing the National Gender<br />
Based Violence Strategy w<strong>it</strong>h the Ministry of<br />
Youth, Gender and Employment Creation,<br />
as a <strong>YWCA</strong> representative, in March 2005.<br />
As a young woman, I contributed on how<br />
gender based violence affects us and why <strong>it</strong> is<br />
important <strong>to</strong> implement the strategy proposed.<br />
I also recommended stiffer penalties for sexual<br />
offenders so as <strong>to</strong> reduce the incidence of such<br />
crimes.<br />
Over the years, I have gained exposure <strong>to</strong><br />
emerging trends, debates and decisions made<br />
in relation <strong>to</strong> HIV and AIDS. I have realised that<br />
working w<strong>it</strong>h commun<strong>it</strong>ies on HIV and AIDS is<br />
a process that involves good practice, good<br />
infrastructure and good skills <strong>to</strong> strengthen all<br />
aspects of organized society. Young women are<br />
at a greater risk of being infected and, as long<br />
as we continue <strong>to</strong> take the back seat, the issues<br />
that affect us will continue <strong>to</strong> be ignored. Young<br />
women need <strong>to</strong> influence policy on HIV and<br />
AIDS. The emancipation of young women by<br />
strengthening participation in social movements,<br />
and the integration of gender concerns in<br />
creating supportive and enabling environments is<br />
key <strong>to</strong> the fight against HIV and AIDS.<br />
48<br />
Born: 1982<br />
Country: Zimbabwe<br />
Organisation: <strong>YWCA</strong>, Africa<br />
Youth In<strong>it</strong>iative Network<br />
Campaigns for: effective ARV<br />
treatment support for child<br />
headed families and orphans
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Florence Masuliya<br />
We want <strong>to</strong> change the lives of many more young<br />
people engaged in sex work through support, training<br />
and care.<br />
I am Florence Masuliya, a 26-year-old woman<br />
from Uganda. In 2003, I was bedridden and<br />
weighed 25kg. After going through HIV and AIDS<br />
counselling w<strong>it</strong>h a <strong>YWCA</strong> commun<strong>it</strong>y worker,<br />
I decided <strong>to</strong> go for an HIV test and the results<br />
came back HIV pos<strong>it</strong>ive. It <strong>to</strong>ok three months<br />
of continuous counselling, comforting and<br />
encouragement <strong>to</strong> be strong and confident before<br />
I came <strong>to</strong> terms w<strong>it</strong>h my status. Even though <strong>it</strong><br />
was difficult, I was not discouraged but instead<br />
decided <strong>to</strong> join hands w<strong>it</strong>h <strong>YWCA</strong> youth in fighting<br />
the spread of HIV and AIDS among our peers.<br />
Being born in the Bwaise, Saint Francis, a slum<br />
area of Kampala c<strong>it</strong>y, w<strong>it</strong>h 17,000 inhab<strong>it</strong>ants,<br />
and highly burdened by HIV and AIDS, I know the<br />
living standards of women and girls. Many young<br />
girls join street sex workers in order <strong>to</strong> meet their<br />
material and financial needs. In order <strong>to</strong> respond<br />
<strong>to</strong> the needs of young people in my commun<strong>it</strong>y,<br />
I founded Tus<strong>it</strong>ukirewamu (un<strong>it</strong>ed we stand)<br />
<strong>YWCA</strong> youth club. I have good support from the<br />
programme officer and the youth coordina<strong>to</strong>r.<br />
The <strong>YWCA</strong> helped <strong>to</strong> register the club as a CBO<br />
according <strong>to</strong> Ugandan laws.<br />
Realising that sex work can place women<br />
in s<strong>it</strong>uations that leads <strong>to</strong> HIV and AIDS,<br />
Tus<strong>it</strong>ukirewamu started sens<strong>it</strong>ising this group of<br />
young girls about HIV and AIDS. Most of them<br />
are young mothers between the age of 15-25.<br />
Currently, we have a team of about 70 sex<br />
workers in the youth club and through the <strong>YWCA</strong><br />
we offer training in vocational skills <strong>to</strong> help them<br />
identify different avenues of earning an income.<br />
As an activist, I have managed <strong>to</strong> network and<br />
link the youth club team w<strong>it</strong>h other stakeholders<br />
such as The AIDS Support Organisation,<br />
49
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
ActionAid and Herbalists, all of whom provide<br />
Antiretroviral (ARV) medication, treatment for<br />
opportunistic infections, food and other material<br />
support and services.<br />
Through donations we received hair dryers and<br />
now some members have opened hair salons.<br />
We are in the process of negotiating sewing<br />
machines w<strong>it</strong>h ActionAid. Coming from the same<br />
area as my peers in the youth club, I am able<br />
<strong>to</strong> interact w<strong>it</strong>h them freely and mobilise them<br />
for trainings and sens<strong>it</strong>isation workshops. The<br />
training and workshops are not open <strong>to</strong> parents,<br />
commun<strong>it</strong>y and religious leaders, or elders. In<br />
this way, the young girls feel comfortable and<br />
safe <strong>to</strong> express themselves among their peers<br />
who understand the kind of s<strong>it</strong>uations, which<br />
drive them <strong>to</strong> such work.<br />
We want <strong>to</strong> change the lives of many more young<br />
people engaged in sex work through support,<br />
training and care. So far, 10 out of the 70<br />
Tus<strong>it</strong>ukirewamu members have chosen <strong>to</strong> take<br />
up new opportun<strong>it</strong>ies. These young women have<br />
gone for testing, declared their HIV status, and<br />
now have a career in tailoring and hairdressing.<br />
Many more have decided <strong>to</strong> go for HIV tests.<br />
Continued sens<strong>it</strong>isation on behavioural change<br />
is a long process but I hope Tus<strong>it</strong>ukirewamu will<br />
have an impact on my peers.<br />
50<br />
Born: 1979<br />
Country: Uganda<br />
Organisation: <strong>YWCA</strong><br />
Uganda<br />
Campaigns for:<br />
alternative livelihoods<br />
for sex workers and at<br />
risk young girls and<br />
women who are HIV<br />
pos<strong>it</strong>ive
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Phumzile Ndlovu<br />
I feel a great sense of pride when I can assist even one<br />
lonely, frightened, afflicted person living in isolation here.<br />
When I completed high school in 1998, I<br />
volunteered w<strong>it</strong>h the <strong>World</strong> Vision Child Survival<br />
Programme, a project in my commun<strong>it</strong>y of<br />
Bergville, that aimed <strong>to</strong> improve the survival<br />
of children through education on child health<br />
issues. I worked w<strong>it</strong>h them for three years<br />
as a sexual<strong>it</strong>y educa<strong>to</strong>r giving HIV and AIDS<br />
awareness courses at local schools. Early on I<br />
attended a youth conference at KwaSizabantu,<br />
where a delegation of “Doc<strong>to</strong>rs for Life”<br />
presented their work w<strong>it</strong>h patients who were<br />
terminally ill w<strong>it</strong>h AIDS. The personal testimonies<br />
of the doc<strong>to</strong>rs and patients had a profound effect<br />
on me. The door <strong>to</strong> this vocation was opened<br />
when I encountered a child orphaned by AIDS<br />
who had been adopted by one of the doc<strong>to</strong>rs.<br />
The plight of this child wounded my inner being,<br />
but the example set by the doc<strong>to</strong>rs sparked my<br />
interest in care work, and in helping <strong>to</strong> save<br />
lives by introducing people <strong>to</strong> the health system.<br />
Many people have died and others are still dying<br />
because they lack the information they need.<br />
When the funding for the Child Survival<br />
Programme came <strong>to</strong> an end, the commun<strong>it</strong>y was<br />
offered support by the KwaZulu Natal Department<br />
51
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
of Health <strong>to</strong> train volunteer home based care<br />
givers. I was 20 years old at the time, <strong>to</strong>o young<br />
<strong>to</strong> be accepted in<strong>to</strong> the training programme as<br />
a care giver. But I was eager <strong>to</strong> be involved and<br />
consequently was assigned <strong>to</strong> administration and<br />
public relations for the training programme. Since<br />
late 1999, I have been co-ordinating the home<br />
based care programmes in Bergville. We have 72<br />
caregivers in a commun<strong>it</strong>y of 140,000 inhab<strong>it</strong>ants.<br />
Our target groups are orphans, youth, widows and<br />
HIV pos<strong>it</strong>ive people. I mobilise and co-ordinate<br />
NGOs and representatives from local government<br />
departments <strong>to</strong> form an intersec<strong>to</strong>ral team for<br />
AIDS Action that meets every two months.<br />
I work w<strong>it</strong>h commun<strong>it</strong>y leaders by men<strong>to</strong>ring<br />
and valuing HBC home based caregivers,<br />
fundraising w<strong>it</strong>h church leaders and farmers, and<br />
have an audience w<strong>it</strong>h pol<strong>it</strong>ical leadership. Our<br />
government does not worry about continuum<br />
of care outside health facil<strong>it</strong>ies, which is why<br />
caregivers are not recognised for their work.<br />
Yet they are very important women who help<br />
our society <strong>to</strong> care for the sick and orphaned.<br />
This is why in 2004 I addressed our Premier, Mr.<br />
Sbusiso Ndebele, asking him <strong>to</strong> recognise the<br />
hard work and dedication of volunteer caregivers<br />
in our commun<strong>it</strong>ies.<br />
When someone has AIDS, the family usually<br />
has no idea how <strong>to</strong> cope. Because of the nature<br />
of the illness, the patient will suddenly develop<br />
new opportunistic infections that can frighten the<br />
family. The carers show the family how <strong>to</strong> deal<br />
w<strong>it</strong>h these new symp<strong>to</strong>ms in the best possible<br />
way. As a result, clients and their families are<br />
able <strong>to</strong> confide their fears and challenges <strong>to</strong><br />
carers, and that is often more important than<br />
the l<strong>it</strong>tle medical help we have <strong>to</strong> offer. Our<br />
responsibil<strong>it</strong>y is also <strong>to</strong> help the clinic come <strong>to</strong><br />
the patient, when our clients are desperate for<br />
help. Because the commun<strong>it</strong>y doc<strong>to</strong>rs are in the<br />
clinics most of the time, they seldom get <strong>to</strong> the<br />
people in the rural areas who are <strong>to</strong>o ill <strong>to</strong> walk<br />
the distance.<br />
52<br />
Since September 2004, in association w<strong>it</strong>h the<br />
caregivers and Dr. Moll from the Tugela Ferry<br />
Church of Scotland Hosp<strong>it</strong>al at Umsinga, we<br />
introduced an anti-retroviral (ARV) treatment<br />
programme, involving over 30 patients. The<br />
Bergville-Okhahlamba Hosp<strong>it</strong>al, which is<br />
closest has no ARV treatment facil<strong>it</strong>ies but<br />
through the relationship developed w<strong>it</strong>h the<br />
hosp<strong>it</strong>al at Umsinga, 300 km away, many<br />
people are now receiving treatment. The<br />
treatment is free but they have <strong>to</strong> pay for<br />
transport and food while they are at the<br />
hosp<strong>it</strong>al. We don’t have a vehicle <strong>to</strong> transport<br />
them so they hire private vehicles.<br />
When we began providing treatment <strong>to</strong> our<br />
clients the Treatment Action Campaign (TAC) did<br />
training w<strong>it</strong>h us. This helped us <strong>to</strong> understand the<br />
issues of treatment and we incorporated these<br />
in<strong>to</strong> our HBC work.<br />
The whole issue of disabil<strong>it</strong>y grants provided by<br />
the government is a difficult one. Most people<br />
desperately need the money because they<br />
are starving but are <strong>to</strong>o ill <strong>to</strong> go <strong>to</strong> government<br />
departments <strong>to</strong> fetch their money. They also only<br />
qualify for a disabil<strong>it</strong>y grant when their immune<br />
system CD4 count is so low that they can barely<br />
walk. I try <strong>to</strong> use my office telephone as much<br />
as possible <strong>to</strong> sort out these problems, but the<br />
system is not quick. Many people die before they<br />
are paid their due.<br />
We facil<strong>it</strong>ated the distribution of 38 <strong>to</strong>ns of maize<br />
donated by farmers in the area. The HBC givers`<br />
team identified the most needy households,<br />
particularly those caring for children affected by<br />
AIDS, and w<strong>it</strong>h no income or financial assistance<br />
through social grants. The farmers also pay for<br />
school fees and buy clothing for those children<br />
who are not receiving government grants. The<br />
government gives monthly grants for foster<br />
care, child care and care dependency children.<br />
I have helped one of our clients <strong>to</strong> secure the
Young women intervene in a world w<strong>it</strong>h AIDS<br />
documents required for his R32, 000.00, that he<br />
had struggled <strong>to</strong> obtain for over two years.<br />
As HBC volunteers, participated in the making<br />
of a documentary about the real<strong>it</strong>ies of living<br />
w<strong>it</strong>h and dying of AIDS related illnesses, called<br />
“Deadly Myths”, which was produced by Jill<br />
Kruger and funded by the Centre for HIV and<br />
AIDS Networking (HIVAN). The documentary<br />
intends <strong>to</strong> broaden awareness on widespread<br />
misconceptions about the transmission of the<br />
disease and <strong>to</strong> take the debate in<strong>to</strong> commun<strong>it</strong>ies<br />
that are affected by HIV and AIDS. As part of the<br />
documentary team, I assisted in co-ordinating<br />
the care workers who chose <strong>to</strong> speak on film<br />
about their daily lives spent caring for people<br />
and families affected by HIV and AIDS in<br />
Bergville.<br />
The women I work w<strong>it</strong>h give up their lives <strong>to</strong> tend<br />
<strong>to</strong> the sick and dying. These carers are not paid<br />
for the job they do. This year we raised R27,<br />
000.00 from a church in Australia <strong>to</strong> buy food<br />
parcels for HBC givers as compensation for their<br />
voluntary work.<br />
In 2004, I won a Young South African Achiever<br />
Award from Love Life for my work as a coordina<strong>to</strong>r<br />
of HBC program in the Bergville district.<br />
Being 1 of 6 winners chosen out of over 5,000<br />
entrants around the world, I travelled <strong>to</strong> Brazil<br />
w<strong>it</strong>h the Direc<strong>to</strong>r of Love Life, Jill Kruger, <strong>to</strong><br />
speak of my work. W<strong>it</strong>h the R5, 000.00 prize<br />
money for the award as a starting fund, we built<br />
a commun<strong>it</strong>y centre where youth get training in<br />
sexual<strong>it</strong>y education, drama and art. The youth<br />
volunteer at the centre get short-term contracts<br />
w<strong>it</strong>h organisations doing work in our area. At<br />
this centre, young people are recru<strong>it</strong>ed as<br />
groundbreakers in the Love Life Programme. The<br />
programme aims <strong>to</strong> reduce teenage pregnancies,<br />
HIV infection and sexually transm<strong>it</strong>ted infections<br />
among young South Africans. I keep asking<br />
people <strong>to</strong> raise more money for this project.<br />
My men<strong>to</strong>rs in home based care and child<br />
survival have trained me and given me<br />
opportun<strong>it</strong>ies, are the Project Manager, Ms.<br />
Monika Holst, and Mrs. Busisiwe “Mama” Dube,<br />
a retired nurse now involved in commun<strong>it</strong>y work.<br />
The youth at the centre inspire me w<strong>it</strong>h their<br />
humbleness, fresh ideas and vision. I consider<br />
<strong>myself</strong> a listener of people’s ideas.<br />
In September 2003, we started a group of HIV<br />
pos<strong>it</strong>ive widows, which now <strong>to</strong>tals 18 women and<br />
functions as a formal support group. The widows<br />
relate their s<strong>to</strong>ries on how HIV has impacted on<br />
their lives. We encourage them by giving them<br />
space and a chance <strong>to</strong> be listened <strong>to</strong>. People<br />
like <strong>to</strong> be listened <strong>to</strong> and we are working <strong>to</strong>wards<br />
breaking the culture of secrecy. I believe the first<br />
step is <strong>to</strong> establish a relationship w<strong>it</strong>h people.<br />
As we approach the “end of the beginning” of the<br />
AIDS pandemic, my vision is for a home based<br />
care programme that will address existing and<br />
emerging problems <strong>to</strong> treatment and care for<br />
our commun<strong>it</strong>ies. As all members of our team of<br />
caregivers are ill<strong>it</strong>erate, we need <strong>to</strong> invest in their<br />
own educational improvement and sustenance if<br />
they are <strong>to</strong> be effective in helping w<strong>it</strong>h the roll-out<br />
of anti-retroviral treatment. I have also observed<br />
that people living w<strong>it</strong>h AIDS are dying even<br />
while on ARVs because of a lack of adherence,<br />
and because of confusion surrounding the<br />
compatibil<strong>it</strong>y of trad<strong>it</strong>ional remedies and ARVs.<br />
I strongly believe that empowered caregivers are<br />
a v<strong>it</strong>al asset in supporting families <strong>to</strong> understand<br />
ARVs, trad<strong>it</strong>ional remedies, nutr<strong>it</strong>ion, and other<br />
fac<strong>to</strong>rs that play a role in recovery and staying<br />
healthy. Such an empowerment programme<br />
would include:<br />
• Intensive training for caregivers on the control of<br />
opportunistic infections, anti-retroviral treatment<br />
and other medical support processes<br />
• Financial incentives for caregivers.<br />
• An ongoing media project <strong>to</strong> document the<br />
53
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
work and development of home based care in<br />
South Africa, through the production of his<strong>to</strong>rical<br />
records, articles and a journal. This material<br />
would be circulated <strong>to</strong> South African and<br />
international organisations <strong>to</strong> keep them informed<br />
and attract their support.<br />
• The building of Arts and Culture Centres, <strong>to</strong> be<br />
run in association w<strong>it</strong>h the HBC programme and<br />
as infrastructure for support groups and their<br />
income-generating projects.<br />
• The establishment of a multi-service centre<br />
or “one-s<strong>to</strong>p-shop” in at least one rural area <strong>to</strong><br />
provide access <strong>to</strong> commun<strong>it</strong>y health and related<br />
services.<br />
As a young South African, I know that this line of<br />
work challenges one <strong>to</strong> remain humble, and not<br />
<strong>to</strong> seek fame or material fortune. However, <strong>it</strong> also<br />
presents one w<strong>it</strong>h opportun<strong>it</strong>ies <strong>to</strong> develop inner<br />
greatness. I feel a great sense of pride when I<br />
can assist even one lonely, frightened, afflicted<br />
person living in the isolation here among the<br />
Drakensberg Mountains.<br />
Through my employment w<strong>it</strong>h HIVAN, which<br />
partners w<strong>it</strong>h the Child Survival project, I am now<br />
a researcher documenting the lives of the people<br />
living at the centre of the AIDS pandemic in this<br />
remote rural setting. Everyday, the work I do<br />
motivates me and deepens my understanding of<br />
the levels, causes and lessons of such suffering<br />
in our society. The more I pursue my work and<br />
study, the more I know what <strong>it</strong> is <strong>to</strong> be human,<br />
and what human<strong>it</strong>y asks of me and gives <strong>to</strong> me.<br />
54<br />
Born: 1979<br />
Country: KwaZulu<br />
Natal, South Africa<br />
Organisation: HIV<br />
and AIDS Networking<br />
(HIVAN), <strong>World</strong> Vision<br />
Campaigns for:<br />
Care and Support of<br />
PLWHA, their families<br />
and care givers
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Agnes Njeri Wanjiku<br />
The issue of disclosure of HIV status, especially between<br />
married couples, is very tricky. We have many cases of<br />
discordant couples who suffer silently because they<br />
fear rejection from spouses if they disclose their status.<br />
My name is Agnes Njeri, a 27-year-old from<br />
Kenya. I joined KENWA in 1999 after being a<br />
care giver <strong>to</strong> my aunt who was a commercial<br />
sex worker (CSW) and HIV pos<strong>it</strong>ive. Because of<br />
taking care of my ailing Aunt, my family wanted<br />
nothing <strong>to</strong> do w<strong>it</strong>h me.<br />
My family believed that my aunt had brought the<br />
disease upon herself by doing sex work. To them<br />
this was the consequence of immoral behaviour<br />
and was therefore a much deserved punishment.<br />
Desp<strong>it</strong>e this stigma I never gave up taking care<br />
of her until she passed away December 26,<br />
1999. My aunt had one son and a grandchild.<br />
Unfortunately, the son was murdered one year<br />
later. Through this experience, I felt <strong>it</strong> was my<br />
duty <strong>to</strong> act as an ambassador in my commun<strong>it</strong>y<br />
<strong>to</strong> help people who are HIV pos<strong>it</strong>ive through<br />
counselling. Since Oc<strong>to</strong>ber 24, 2004 I have been<br />
the coordina<strong>to</strong>r of KENWA’s drop-in-centre in<br />
Mathare, where I have been reaching out <strong>to</strong> the<br />
commun<strong>it</strong>y.<br />
The population in Mathare is around 700,000<br />
people, and more than 150,000 people are HIV<br />
pos<strong>it</strong>ive. At the centre, we have 330 care givers<br />
and 18 commun<strong>it</strong>y health workers. The care<br />
givers work on a voluntary basis and sometimes<br />
we give them a small <strong>to</strong>ken of appreciation. The<br />
feeding programme caters for 136 orphans and<br />
vulnerable children. 110 of the children are in<br />
school and 26 are under the age of five. We<br />
feed them seven days a week, although due<br />
<strong>to</strong> lim<strong>it</strong>ed funding, we are only able <strong>to</strong> provide<br />
breakfast and lunch. Some family members<br />
claim responsibil<strong>it</strong>y for their relatives` children<br />
as guardians, but some HIV pos<strong>it</strong>ive people and<br />
care givers are also parenting orphans.<br />
Through KENWA we have managed <strong>to</strong><br />
provide vocational training in hairdressing and<br />
dressmaking <strong>to</strong> young women. In my centre,<br />
we <strong>to</strong>ok seven commercial sex workers (CSWs)<br />
for vocational training, although unfortunately<br />
two dropped out because of lack of interest and<br />
comm<strong>it</strong>ment. We also gave two CSWs cap<strong>it</strong>al <strong>to</strong><br />
start small businesses and they are doing qu<strong>it</strong>e<br />
well. 13 CSWs have also been introduced <strong>to</strong><br />
the Kenya rural enterprise project, which offers<br />
micro-finance loans <strong>to</strong> KENWA members for<br />
income generating activ<strong>it</strong>ies.<br />
Our centre has a young mothers’ club,<br />
which mainly deals w<strong>it</strong>h fighting stigma and<br />
discrimination, through songs, dance and drama<br />
w<strong>it</strong>h messages specifically tailored <strong>to</strong> change<br />
the behaviour and perceptions of people w<strong>it</strong>h<br />
regard <strong>to</strong> HIV and AIDS related issues. The<br />
young mothers meet every Saturday <strong>to</strong> share<br />
experiences and encourage each other. During<br />
sessions they are all given condoms, which<br />
they later distribute in pubs, clubs and other<br />
entertainment spots.<br />
Beatrice Wa<strong>it</strong>hera is a young single mother<br />
aged 24 years, w<strong>it</strong>h two children. She was a<br />
commercial sex worker in Nairobi. I first met<br />
w<strong>it</strong>h her in June 2004 at East Leigh, St Vincent<br />
Antenatal Clinic in Nairobi where I had been<br />
inv<strong>it</strong>ed for a health talk session w<strong>it</strong>h expectant<br />
mothers. She was then eight months pregnant.<br />
Three days after meeting w<strong>it</strong>h Beatrice, she came<br />
<strong>to</strong> Mathare drop-in-centre wanting <strong>to</strong> know more<br />
about prevention of mother <strong>to</strong> child transmission<br />
(PMTCT) because she had just learnt about her<br />
HIV pos<strong>it</strong>ive status. She gave birth just after<br />
being introduced <strong>to</strong> the support group.<br />
55
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
As a HBC giver I continued taking care of her<br />
at home, for she had no close relatives <strong>to</strong> look<br />
after her. KENWA gave her vocational training as<br />
a hairdresser in March 2005. After two months<br />
she dropped out, claiming that her kids were<br />
starving. Beatrice went back <strong>to</strong> her former ways<br />
of earning a living. It was during this time that, out<br />
of desperation, she tried <strong>to</strong> comm<strong>it</strong> suicide. She<br />
was completely unable <strong>to</strong> meet her children’s<br />
needs. She swallowed some poisonous<br />
chemicals but luckily a neighbour who heard<br />
unusual painful groaning coming from Beatrice’s<br />
house rescued her. KENWA offered a vehicle <strong>to</strong><br />
take her <strong>to</strong> hosp<strong>it</strong>al.<br />
During her stay in hosp<strong>it</strong>al we stayed w<strong>it</strong>h her<br />
kids at the drop-in-centre. She fully recovered<br />
and I continued counselling her for a period of<br />
two months. After much counselling, she thought<br />
of opening a business. She <strong>to</strong>ld me she was<br />
ready <strong>to</strong> start a new life although <strong>it</strong> <strong>to</strong>ok a lot of<br />
will power for her <strong>to</strong> s<strong>to</strong>p commercial sex work.<br />
She thought that she had a genetic predispos<strong>it</strong>ion<br />
<strong>to</strong> be a CSW.<br />
I wrote a letter <strong>to</strong> the head of KENWA, Asunta,<br />
humbly requesting cap<strong>it</strong>al <strong>to</strong> help Beatrice,<br />
which Asunta responded <strong>to</strong> pos<strong>it</strong>ively. Currently,<br />
Beatrice is running a small green grocery kiosk,<br />
although she tells me that she had a very hard<br />
time adjusting <strong>to</strong> her new business. She is one of<br />
our active group therapy members. She says that<br />
sometimes when she goes a day w<strong>it</strong>hout selling<br />
she is tempted <strong>to</strong> go <strong>to</strong> her former business. She<br />
keeps her strength by vis<strong>it</strong>ing the drop-in-centre.<br />
As a commun<strong>it</strong>y health care worker, I have<br />
experienced some challenges w<strong>it</strong>h our clients.<br />
First of all the Mathare area does not have<br />
proper waste disposal facil<strong>it</strong>ies and <strong>to</strong>ilets. This<br />
56<br />
makes the environment unhygienic, and general<br />
communicable diseases are very common. There<br />
are <strong>to</strong>o many expectations beyond what we can<br />
do, such as paying house rent and hosp<strong>it</strong>al bills,<br />
and inadequate resources <strong>to</strong> nurse a client, like<br />
soap for washing. Relatives and the commun<strong>it</strong>y<br />
sometimes expect KENWA <strong>to</strong> meet all the funeral<br />
expenses when a patient dies, claiming that we<br />
used <strong>to</strong> take care of her. We also have <strong>to</strong> report<br />
and file cases of child abuse, child negligence<br />
and child labour <strong>to</strong> the police.<br />
There is also much fear and insecur<strong>it</strong>y around<br />
working hours. We are often called at night<br />
<strong>to</strong> take clients <strong>to</strong> hosp<strong>it</strong>al. In add<strong>it</strong>ion, some<br />
clients become sexually attracted <strong>to</strong> their care<br />
givers, putting them in a very awkward and<br />
embarrassing pos<strong>it</strong>ion. Some of the CHWS meet<br />
arrogant drunkards while distributing condoms in<br />
the local bars and lodges.<br />
The issue of disclosure of HIV status, especially<br />
between married couples, is very tricky. We<br />
have many cases of discordant couples that are<br />
silent because they fear rejection from spouses<br />
if they disclose their status. Our work is qu<strong>it</strong>e<br />
demanding. It requires <strong>to</strong>tal dedication, time and<br />
comm<strong>it</strong>ment in client treatment follow-up.<br />
Born: 1978<br />
Country: Kenya<br />
Organisation: KENWA<br />
Campaigns for:<br />
professional<br />
reconversion, support,<br />
training, counselling of<br />
HIV pos<strong>it</strong>ive people.
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Mwelwa Chibuye<br />
I believe that one can do wonders even if you are HIV<br />
pos<strong>it</strong>ive.<br />
I tested HIV pos<strong>it</strong>ive in 1999, when I was 19-<br />
years-old, and went in<strong>to</strong> denial for almost three<br />
years. Upon noticing that a number of my close<br />
friends and relatives were dying from AIDS<br />
related illnesses, <strong>it</strong> triggered me <strong>to</strong> do something<br />
about my s<strong>it</strong>uation.<br />
I became interested in working in HIV when<br />
I realised that my life could still be full and<br />
meaningful and that I had the potential <strong>to</strong><br />
contribute pos<strong>it</strong>ively <strong>to</strong> interventions against HIV<br />
and AIDS.<br />
I <strong>to</strong>ld my bishop at church about my status and<br />
asked him if I could disclose my HIV status <strong>to</strong> the<br />
rest of the congregation. He was not for the idea.<br />
Instead he assured me that we could pray God <strong>to</strong><br />
heal me. When Sunday came I was determined<br />
<strong>to</strong> disclose because I knew I was doing the right<br />
thing and <strong>it</strong> would help many who might be in<br />
denial like I was before. I also wanted <strong>to</strong> convey<br />
that HIV does not care whether one is a born<br />
again Christian. <strong>If</strong> one indulges in unprotected<br />
sex and does not stick <strong>to</strong> one sexual partner<br />
who is aware of their status, one is at risk of<br />
contracting the virus. So I disclosed and almost<br />
everybody was shocked, as they did not expect<br />
me <strong>to</strong> be HIV pos<strong>it</strong>ive because I was normal and<br />
participating in church activ<strong>it</strong>ies. That was my first<br />
experience in the line of HIV work.<br />
HIV and AIDS has since become my life,<br />
especially in the area of pos<strong>it</strong>ive living. I believe<br />
that one can do wonders even if you are<br />
HIV pos<strong>it</strong>ive. Having gone through a difficult<br />
upbringing I still managed <strong>to</strong> live pos<strong>it</strong>ively and<br />
of course not forgetting what the Network of<br />
Zambian people living w<strong>it</strong>h HIV and AIDS (NZP+)<br />
has done by building my capac<strong>it</strong>y.<br />
57
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
I have a Certificate in Social Work Methods from<br />
the Univers<strong>it</strong>y of Zambia as well as certificates in<br />
Psychosocial counselling in HIV and AIDS and<br />
in support group training. I now work w<strong>it</strong>h NZP+<br />
as the Lusaka District Coordina<strong>to</strong>r, in charge of<br />
coordinating 150 support groups of people living<br />
w<strong>it</strong>h HIV and AIDS.<br />
My own uncle, who thought he had the right <strong>to</strong><br />
abuse me sexually just because he was paying<br />
my college fees, made me very vulnerable <strong>to</strong><br />
HIV infection. I work w<strong>it</strong>h NGOs, churches,<br />
commun<strong>it</strong>ies and schools, and w<strong>it</strong>h out of school<br />
youth and other youth groups. I encourage youth<br />
<strong>to</strong> acquire more information on sexual<strong>it</strong>y and<br />
try <strong>to</strong> break the silence on incest by telling my<br />
own s<strong>to</strong>ry. I also work w<strong>it</strong>h commun<strong>it</strong>ies, and<br />
especially help HIV pos<strong>it</strong>ive people establish<br />
support groups. I am also a member of a support<br />
group of PLWHA.<br />
I work w<strong>it</strong>h households by in<strong>it</strong>iating <strong>to</strong>pics on<br />
HIV and AIDS, getting their views, and sharing<br />
the l<strong>it</strong>tle knowledge I have. I also feature on<br />
the Buaze Radio Show produced by a youth<br />
organisation called Africa Directions. On the<br />
radio programme we try <strong>to</strong> bring out issues<br />
affecting young people and use the time <strong>to</strong> lobby<br />
the government <strong>to</strong> do something about specific<br />
issues that need attention.<br />
58<br />
Born: 1980<br />
Country: Zambia<br />
Organisations: HCP,<br />
Afya Muzuri, Africa<br />
Directions, NZP+<br />
Campaign for: raising<br />
commun<strong>it</strong>y awareness<br />
of HIV and AIDS
Young women intervene in a world w<strong>it</strong>h AIDS<br />
TOOL BOX<br />
Give a Helping Hand<br />
Comprehensive Care and Support<br />
W<strong>it</strong>h the number of new HIV infections rising in most countries, the demand<br />
for care and support is continuously increasing, thus posing tremendous<br />
challenges <strong>to</strong> healthcare services and commun<strong>it</strong>y inst<strong>it</strong>utions and<br />
organisations responding <strong>to</strong> the pandemic.<br />
There is a difference between active participation and observation. Being<br />
sympathetic is just not enough. It is time for action so that we can effect<br />
changes that are necessary w<strong>it</strong>hin our commun<strong>it</strong>ies.<br />
Women living w<strong>it</strong>h HIV and AIDS need:<br />
• Access <strong>to</strong> information relating <strong>to</strong> HIV and AIDS and their sexual and<br />
reproductive health and rights. Most importantly they need support <strong>to</strong><br />
access these rights<br />
• Economic empowerment so that women can be free <strong>to</strong> make informed<br />
choices about their lives and their health. Most women in developing<br />
countries are economically dependent on their husbands or male relatives;<br />
therefore they cannot leave when they are being exposed <strong>to</strong> HIV and other<br />
STDs<br />
• To develop negotiation skills as in many countries <strong>it</strong> is unacceptable for a<br />
woman <strong>to</strong> ask her husband or partner <strong>to</strong> wear a condom or <strong>to</strong> s<strong>to</strong>p him from<br />
being in a relationship having more than one partner<br />
• Access <strong>to</strong> medication that can prevent passing HIV on<strong>to</strong> their babies<br />
• Antenatal and other friendly health care services, as being pregnant<br />
exposes a woman <strong>to</strong> lowered immun<strong>it</strong>y<br />
• Support, as women are the main carers, but if the same woman is sick a<br />
man seldom looks after her and when a female member of the family dies,<br />
her children are generally passed on <strong>to</strong> other female relatives <strong>to</strong> look after<br />
• Laws that protect them against wife inher<strong>it</strong>ance and sexual cleansing<br />
among many other trad<strong>it</strong>ions. The practices originally supposed <strong>to</strong> protect<br />
women are now placing them at special risk and are common practice in<br />
many African countries<br />
• More research relating <strong>to</strong> women’s health issues and HIV and AIDS.<br />
• Governments <strong>to</strong> ensure that women have access <strong>to</strong> treatment for HIV<br />
and AIDS and also treatment for opportunistic infections, such as TB and<br />
sexually transm<strong>it</strong>ted diseases.<br />
59
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Steps <strong>to</strong> be taken<br />
Commun<strong>it</strong>y-based projects can link w<strong>it</strong>h medical and social support services<br />
<strong>to</strong> provide:<br />
• Medical and nursing care, including an element of home based care<br />
(HBC)<br />
• Access <strong>to</strong> appropriate diagnosis<br />
• Treatment and prevention of opportunistic infections, including TB<br />
• Management of HIV-related illnesses<br />
• Antiretroviral therapy<br />
• Psychological support (counselling)<br />
• Socio-economic support <strong>to</strong> families, children affected by AIDS, and key<br />
populations vulnerable <strong>to</strong> HIV, such as children and youth<br />
• Human rights and legal support, where human rights have been wronged<br />
• Active commun<strong>it</strong>y involvement<br />
• Support for care givers<br />
• Referral mechanisms.<br />
Successful home based care programmes<br />
• Uphold the rights and dign<strong>it</strong>y of people infected and affected by HIV and<br />
AIDS<br />
• Ensure active participation of family and commun<strong>it</strong>y members<br />
• Provide space for equal partnership and mutual respect between family<br />
and commun<strong>it</strong>y members of the home based care team facil<strong>it</strong>a<strong>to</strong>rs<br />
• Build on the real<strong>it</strong>ies of living w<strong>it</strong>h HIV while maintaining hope based on<br />
commun<strong>it</strong>y collective action<br />
• Maximize use of commun<strong>it</strong>y resources while identifying and using<br />
add<strong>it</strong>ional external resources as needed<br />
• Have a strong element of confidential<strong>it</strong>y (shared)*<br />
• Scaling up programmes <strong>to</strong> meet future needs.<br />
*This is a s<strong>it</strong>uation where information and circumstances related <strong>to</strong> personal<br />
life should only be available at the discretion of the individual. <strong>If</strong> the carer is<br />
<strong>to</strong>ld something they must keep <strong>it</strong> <strong>to</strong> themselves. The right <strong>to</strong> share status is<br />
w<strong>it</strong>hheld from the carer unless asked by the individual.<br />
60
Media<br />
and<br />
Communications
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Princess Kasune Zulu<br />
The Lord will turn something that was meant <strong>to</strong> break<br />
you in<strong>to</strong> a breakthrough<br />
In 1986, I lost my baby sister <strong>to</strong> an AIDS related<br />
illness. Then AIDS claimed my mother and<br />
father. In 1994, at the age of 17, I dropped out of<br />
school; I got pregnant and married my boyfriend,<br />
a man 25 years older than me whose previous<br />
wives may have died from AIDS. Two years<br />
later, I gave birth <strong>to</strong> my second daughter. Now<br />
I am a divorced young mother and have just<br />
completed my high school diploma at the age of<br />
29. I tested HIV pos<strong>it</strong>ive in 1997. When I received<br />
my test results, I was not traumatised but rather<br />
filled w<strong>it</strong>h overwhelming peace. The doc<strong>to</strong>r who<br />
was counselling me was more traumatized, so<br />
we ended up sw<strong>it</strong>ching roles! Thankfully, my<br />
daughters, Joy (11) and Fa<strong>it</strong>h (10) are both HIV<br />
negative.<br />
My diagnosis was a spir<strong>it</strong>ual awakening and<br />
I decided <strong>to</strong> go public w<strong>it</strong>h my status, against<br />
the wishes of church leaders and my former<br />
husband. I embarked on a campaign <strong>to</strong> educate<br />
other Zambians <strong>to</strong> protect themselves from HIV<br />
and AIDS. I would h<strong>it</strong>chhike w<strong>it</strong>h truck drivers<br />
and talk <strong>to</strong> them about HIV and AIDS. I gave<br />
seminars <strong>to</strong> major employers and worked w<strong>it</strong>h<br />
primary and secondary schools. At that time HIV<br />
and AIDS was rarely discussed, and my actions<br />
exposed me <strong>to</strong> painful stigma and discrimination.<br />
<strong>World</strong> Vision International’s Special Assistant<br />
<strong>to</strong> the President on AIDS, Mr. Ken Casey,<br />
was vis<strong>it</strong>ing my village when he first heard my<br />
testimony. He was impressed by my s<strong>to</strong>ry and<br />
my abil<strong>it</strong>y <strong>to</strong> tell <strong>it</strong>. He said that when I tell my<br />
s<strong>to</strong>ry, the pandemic becomes real. As a result,<br />
I became the international spokesperson and<br />
AIDS educa<strong>to</strong>r for <strong>World</strong> Vision’s Hope In<strong>it</strong>iative,<br />
a nationwide campaign <strong>to</strong> mobilise Christians<br />
and the general public <strong>to</strong> take action against the<br />
62<br />
global HIV and AIDS pandemic. I train staff <strong>to</strong><br />
care for those w<strong>it</strong>h AIDS and teach prevention<br />
measures <strong>to</strong> Zambia’s children and young<br />
people.<br />
I am the founder and chairperson of Fountain of<br />
Life ministries, a char<strong>it</strong>able organisation for young<br />
AIDS orphans and vulnerable children. Currently<br />
we have more than 500 children. I am also a<br />
co-founder and the current Vice Chairperson of<br />
the African Extended Family Support for Orphans<br />
and Vulnerable Children (AFFESS-OVC).<br />
My radio programme called ‘Pos<strong>it</strong>ive Living’, is<br />
one way we help Zambian listeners address the<br />
challenges of living w<strong>it</strong>h HIV and AIDS and caring<br />
for their loved ones. We discuss and respond<br />
<strong>to</strong> listeners’ questions on various <strong>to</strong>pics. This<br />
year the role of the church was one of the <strong>to</strong>pics<br />
we discussed and <strong>it</strong> attracted a big audience<br />
and much enthusiasm. The church has a role<br />
<strong>to</strong> play in the response <strong>to</strong> HIV and AIDS. They<br />
have moved from discriminating <strong>to</strong> participating<br />
but we want them <strong>to</strong> talk about HIV and how <strong>it</strong><br />
is affecting people, especially the church-going<br />
commun<strong>it</strong>y. Different denominations are coming<br />
<strong>to</strong>gether <strong>to</strong> address HIV and AIDS. I have come<br />
<strong>to</strong> realise that people from all walks of life are<br />
affected and un<strong>it</strong>ed by the AIDS epidemic.<br />
This radio programme received honours from<br />
the US Embassy in Zambia for excellence in<br />
broadcasting on HIV and AIDS.<br />
I continue <strong>to</strong> work w<strong>it</strong>h <strong>World</strong> Vision as an<br />
international AIDS advocate who has dedicated<br />
her life <strong>to</strong> fighting the global epidemic that has<br />
claimed the lives of over 20 million people. I<br />
have taken my message <strong>to</strong> the UN, across the<br />
USA and Africa, <strong>to</strong> Spain, Romania, the UK,
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Ireland, Thailand, Singapore, Australia and New<br />
Zealand, while raising millions of dollars for the<br />
fight. I have met w<strong>it</strong>h senior government leaders,<br />
including the UK Secretary of Development,<br />
and the Irish Parliament, our own President<br />
of the Republic of Zambia, and the wife of the<br />
UN Secretary General. In 2003 I was part of a<br />
delegation <strong>to</strong> the Wh<strong>it</strong>e House’s Oval Office that<br />
met w<strong>it</strong>h President Bush and former Secretary of<br />
State, Colin Powell.<br />
I have also built a strong international media<br />
presence w<strong>it</strong>h features in Cosmopol<strong>it</strong>an, the Wall<br />
Street Journal, USA Today, Christian Today and<br />
Ebony, and on Good Morning America, Fox News<br />
and BBC, as well as leading Irish, Australian<br />
and New Zealand media. At every opportun<strong>it</strong>y,<br />
I try <strong>to</strong> speak boldly about the AIDS pandemic<br />
and <strong>it</strong>s impact on orphans, but also about the<br />
hope that is available for those affected by AIDS<br />
because of the comm<strong>it</strong>ment of organizations like<br />
<strong>World</strong> Vision. But this issue is <strong>to</strong>o big for a few<br />
organizations alone. A response <strong>to</strong> AIDS requires<br />
all nations working <strong>to</strong>gether; that’s why I’m<br />
delighted <strong>to</strong> be a guest speaker on the UNAIDS<br />
Global Women’s Coal<strong>it</strong>ion on HIV and AIDS. I<br />
hope <strong>to</strong> help people see the face of AIDS; the<br />
affected are not just statistics, these are children<br />
and mothers and fathers.<br />
My first book, ‘I Will Not Die Before I am Dead<br />
- a Memoir of Hope in the <strong>World</strong> of AIDS’, will be<br />
published in 2006.<br />
I was nominated for the Reebok Human Rights<br />
award in 2004 and again in 2005 as a young<br />
woman bringing change <strong>to</strong> the fight against HIV/<br />
AIDS.<br />
The Lord has been very good <strong>to</strong> me and every<br />
day I glorify his name. I find my encouragement<br />
in Jeremiah 1:4-10 and Isaiah 45:1-3: The Lord<br />
said <strong>to</strong> me, “I chose you before you were born<br />
I selected you <strong>to</strong> be a prophet <strong>to</strong> the nations.”<br />
“Do not say that you are <strong>to</strong>o young, but go <strong>to</strong> the<br />
people I send you <strong>to</strong>, and tell them everything<br />
I command you <strong>to</strong> say.” The Lord can turn<br />
something that was meant <strong>to</strong> break you in<strong>to</strong> a<br />
breakthrough.<br />
I am now a pas<strong>to</strong>r serving at River C<strong>it</strong>y Church<br />
in Chicago, Illinois. In Oc<strong>to</strong>ber 2006, I am going<br />
<strong>to</strong> enrol in North Park Univers<strong>it</strong>y <strong>to</strong> study for my<br />
undergraduate degree. I continue <strong>to</strong> comm<strong>it</strong><br />
my life <strong>to</strong> the fight against HIV and AIDS, and<br />
hope that as organizations and individuals come<br />
<strong>to</strong>gether in this fight, we can one day make this<br />
world an HIV-free place.<br />
Born: 1976<br />
Country: Zambia<br />
Organisation: <strong>World</strong><br />
Vision International,<br />
Fountain of Life<br />
ministries<br />
Campaigns for: HIV<br />
and AIDS protection,<br />
mobilisation of<br />
Christians and the<br />
general public, care<br />
for AIDS orphans<br />
and vulnerable<br />
children<br />
63
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Belinda Ngwadzai<br />
People do not want <strong>to</strong> accept that HIV really exists until<br />
<strong>it</strong> comes knocking on their door.<br />
My name is Belinda Ngwadzai, a 21-year-old<br />
woman from Zimbabwe. I have been HIV pos<strong>it</strong>ive<br />
for the past seven years.<br />
I was orphaned when I was very young so I<br />
had <strong>to</strong> go and live w<strong>it</strong>h my uncle and aunt.<br />
Being the eldest in the new family, I would<br />
sometimes have <strong>to</strong> look after the other children<br />
while my aunt went <strong>to</strong> South Africa <strong>to</strong> sell<br />
clothes. One evening my uncle abused me<br />
and that is when <strong>it</strong> all started. My sexual<br />
abuse became a police case and I had <strong>to</strong> go<br />
through the motions of a rape victim. Although<br />
the medical examinations revealed that I<br />
was not pregnant, time was <strong>to</strong> reveal a much<br />
worse lifetime sentence <strong>to</strong> bear. I discovered<br />
that my uncle infected me w<strong>it</strong>h the HIV virus<br />
as well as syphilis. I was given antibiotics for<br />
two weeks. I vis<strong>it</strong>ed a family support clinic<br />
for abused children where I had <strong>to</strong> go for<br />
regular checkups and counselling. The signs<br />
of the STD disappeared before I had finished<br />
my medication, but I was <strong>to</strong>ld <strong>to</strong> finish all my<br />
medication as <strong>it</strong> could reoccur.<br />
That was at the tender age of 14, when I didn’t<br />
yet know much about HIV and AIDS. I was taken<br />
<strong>to</strong> The Centre (an organisation for people living<br />
w<strong>it</strong>h HIV and AIDS) for nutr<strong>it</strong>ional guidance,<br />
stress management and post-test counselling.<br />
After the result of my test, I was suicidal because<br />
I thought I was going <strong>to</strong> die, but the counselling<br />
changed my mind. I now have a lot of hope<br />
and that is what I am giving <strong>to</strong> others who may<br />
have already lost <strong>it</strong>. Lynde Francis (Direc<strong>to</strong>r and<br />
Founder, The Centre) and Esther Guzha (Chief<br />
Counsellor, The Centre) helped me come <strong>to</strong><br />
terms w<strong>it</strong>h my status. I could see their strength<br />
and I envied them.<br />
64<br />
I had been very close <strong>to</strong> my aunt before<br />
contracting HIV. However, after testing HIV<br />
pos<strong>it</strong>ive, she started <strong>to</strong> stigmatise me, as she<br />
believed that I was the one who infected her<br />
husband. Her children would ask so many<br />
questions but she would never respond. My uncle<br />
was sentenced <strong>to</strong> eight years in prison. Once<br />
he was imprisoned, my aunt left for her rural<br />
home w<strong>it</strong>h her kids, but w<strong>it</strong>hout me. I remained in<br />
Harare w<strong>it</strong>h my extended family. After attending<br />
a few support group meetings, I decided <strong>to</strong><br />
disclose my status <strong>to</strong> the rest of my family. We<br />
had discussed the possible consequences after<br />
the disclosure and how <strong>to</strong> handle them in the<br />
group. My extended family members were very<br />
supportive and I felt loved. I realised that people<br />
understand you better when they know your<br />
status. During the first few days no one wanted <strong>to</strong><br />
share anything w<strong>it</strong>h me due <strong>to</strong> lack of knowledge<br />
about HIV. I used <strong>to</strong> go <strong>to</strong> The Centre <strong>to</strong> collect<br />
some books about HIV and AIDS for everyone <strong>to</strong><br />
read.<br />
I felt a lot of pain and loneliness when I was <strong>to</strong>ld<br />
the test result. This made me decide <strong>to</strong> disclose<br />
my status <strong>to</strong> other young people. I joined a<br />
youth programme called ‘Choose Life’ (an NGO<br />
started by Sophie Dilm<strong>it</strong>is) where we went <strong>to</strong><br />
private schools and talked about HIV and AIDS.<br />
Youth have many misconceptions and questions<br />
regarding the basics of HIV and AIDS, pos<strong>it</strong>ive<br />
living, and PLWHA. During our school vis<strong>it</strong>s, we<br />
mostly discuss sexual and reproductive health<br />
issues. As I was still in school, I did voluntary<br />
work during the holidays.<br />
After I finished my ‘O’ levels I went <strong>to</strong> the<br />
Connect Inst<strong>it</strong>ute of Systematic Therapy, an<br />
NGO that offers training on counselling, therapy
Young women intervene in a world w<strong>it</strong>h AIDS<br />
and management for professionals like nurses,<br />
teachers, police and army personnel. They offer<br />
lunchtime training, support groups for members,<br />
pre and post counselling w<strong>it</strong>h HIV testing,<br />
therapy, workshops, home vis<strong>it</strong>s, and orphan<br />
support through family counselling. I learnt a lot<br />
while at Connect, and use the skills I learnt on a<br />
daily basis.<br />
I am now a facil<strong>it</strong>a<strong>to</strong>r w<strong>it</strong>h the International Video<br />
Fair (IVF), which is an organisation whose aim<br />
is <strong>to</strong> educate commun<strong>it</strong>ies on crucial social<br />
development issues through the use of video <strong>to</strong><br />
audiences w<strong>it</strong>hout access <strong>to</strong> mainstream media.<br />
IVF’s education focus is mainly centred on HIV<br />
and AIDS, teenage sex and pregnancy, nutr<strong>it</strong>ion,<br />
gender issues and on women who have taken up<br />
the challenge of changing their lives and those of<br />
the people in commun<strong>it</strong>ies around them.<br />
There are still a lot of misconceptions about<br />
HIV and AIDS and other issues surrounding <strong>it</strong>.<br />
I find that people feel free <strong>to</strong> talk about HIV and<br />
AIDS issues w<strong>it</strong>h someone who has experience<br />
w<strong>it</strong>h the virus. As an IVF film screening<br />
facil<strong>it</strong>a<strong>to</strong>r, I have observed that the programme<br />
has helped both those who have access <strong>to</strong><br />
mainstream media and those who don’t. In<br />
2003, IVF partnered w<strong>it</strong>h STEPS <strong>to</strong> screen a<br />
series of short films about HIV and AIDS across<br />
Zimbabwe. The campaign lasted ten months<br />
w<strong>it</strong>h repeat shows in some commun<strong>it</strong>ies. I<br />
participated as a discussion facil<strong>it</strong>a<strong>to</strong>r, mobiliser,<br />
activist, peer educa<strong>to</strong>r, social worker and<br />
actress. For ten months we discussed issues<br />
around HIV and AIDS and I gave my testimony<br />
of living pos<strong>it</strong>ively w<strong>it</strong>h HIV <strong>to</strong> audiences around<br />
Zimbabwe, reaching an average of 3,500 people<br />
per show w<strong>it</strong>h 22 shows per month. Throughout<br />
Zimbabwe I travelled <strong>to</strong> commun<strong>it</strong>ies and public<br />
gatherings giving my testimony before and after<br />
video screenings. Many young women or girls<br />
interested in more information would approach<br />
me after the show and I was more than willing<br />
<strong>to</strong> listen, discuss and provide l<strong>it</strong>erature. When<br />
we returned <strong>to</strong> some commun<strong>it</strong>ies for repeat<br />
screenings I noticed that the question and<br />
answer session was very different, the level of<br />
questions showed more matur<strong>it</strong>y and signs of<br />
understanding.<br />
As I look back at the shows we did here in<br />
Zimbabwe, I always learnt something new and<br />
this made the ten-month campaign interesting<br />
and very educational. The unique thing between<br />
the audience and me is that we all gained<br />
knowledge both from each other and from the<br />
films. As we moved from place <strong>to</strong> place we<br />
learned about different cultural and religious<br />
beliefs that contribute <strong>to</strong> the spread of HIV and<br />
AIDS. Having these discussions made me realise<br />
that there are still some Zimbabweans in denial.<br />
People do not want <strong>to</strong> accept that HIV really<br />
exists until <strong>it</strong> comes knocking on their door. Some<br />
even say that people are using <strong>it</strong> as a way of<br />
making money.<br />
One of the main issues raised is that people find<br />
<strong>it</strong> difficult <strong>to</strong> talk about HIV in their households<br />
because of cultural or religious beliefs. The same<br />
s<strong>it</strong>uation happened in the audience, especially<br />
w<strong>it</strong>h the children; they lim<strong>it</strong>ed their views because<br />
of adults. I think children had a lot more <strong>to</strong> say<br />
but they could not open up because of the mixed<br />
audience. As a result of seeing these films and<br />
having these discussions, I believe most people<br />
have accepted that HIV really exists. People do<br />
not want <strong>to</strong> change their sexual behaviour desp<strong>it</strong>e<br />
65
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
knowing that HIV is there, so we emphasised the<br />
use of protection <strong>to</strong> avoid getting infected w<strong>it</strong>h<br />
other STDs. I sometimes demonstrated how <strong>to</strong><br />
use a condom as part of the discussion because<br />
many people were complaining that the condom<br />
would burst during intercourse.<br />
“The Test”, a 21-minute video on my work, was<br />
produced during the campaign. The film <strong>to</strong>uches<br />
on my personal testimony, the audiences’<br />
disbelief of <strong>it</strong>, and the myths that come w<strong>it</strong>h<br />
HIV and AIDS. My confidence in answering the<br />
audience’s questions is confirmation of how I<br />
have embraced my status and learned <strong>to</strong> live<br />
pos<strong>it</strong>ively w<strong>it</strong>h HIV. Even though I was confident<br />
about telling my s<strong>to</strong>ry before the campaign, going<br />
<strong>to</strong> new commun<strong>it</strong>ies in Zimbabwe and talking in<br />
front of large crowds was new <strong>to</strong> me. It <strong>to</strong>ok me<br />
about five months <strong>to</strong> gain confidence w<strong>it</strong>h the<br />
audiences. The road show crew that I worked<br />
w<strong>it</strong>h during the campaign, especially Char<strong>it</strong>y<br />
Maruta (Regional Direc<strong>to</strong>r of International Video<br />
Fair), made this possible by providing me w<strong>it</strong>h the<br />
information I needed <strong>to</strong> gain that confidence.<br />
Our crew comprised young boys and girls, and I<br />
f<strong>it</strong>ted in well w<strong>it</strong>h them. Working w<strong>it</strong>h fellow youth<br />
made <strong>it</strong> easier <strong>to</strong> relate <strong>to</strong> each other. I must<br />
say I am so lucky that they all love and care for<br />
my well being. At this time, I encouraged one of<br />
the crew members, Braveman Makhaza, <strong>to</strong> get<br />
tested and disclose his status. I <strong>to</strong>ok him through<br />
each stage telling him the advantages of knowing<br />
his status. He was negative, what a relief! After<br />
the test I gave him some counselling on how <strong>to</strong><br />
keep his status negative. Now he is able <strong>to</strong> stand<br />
on stage and talk <strong>to</strong> his friends, relatives and the<br />
country about HIV and AIDS.<br />
Having seen “The Test” young people have<br />
approached me asking where they could go for<br />
advice. Some of them had been sexually abused<br />
a long time ago and didn’t know where <strong>to</strong> go for<br />
help. I think there are a lot more young women<br />
and girls like that out there, who don’t get the<br />
opportun<strong>it</strong>y <strong>to</strong> see this kind of film that gives them<br />
hope. Some of them are even infected right now<br />
and have no idea. My main concern is <strong>to</strong> reach<br />
as many young women and girls as possible.<br />
66<br />
Born: 1983<br />
Country: Zimbabwe<br />
Organisations:<br />
International Video Fair<br />
(IVF)<br />
Campaigns for: involving<br />
young people in dialogue<br />
on HIV and AIDS
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Joya Banerjee<br />
Young people and HIV and AIDS is by nature a highly<br />
controversial subject as the major<strong>it</strong>y of infections<br />
worldwide occur through sexual intercourse, which is<br />
taboo for many people...<br />
I began working on HIV and AIDS issues<br />
during my sophomore year at Barnard College,<br />
Columbia Univers<strong>it</strong>y. I attended presentations by<br />
Dr. Jeffrey Sachs, Direc<strong>to</strong>r of the Earth Inst<strong>it</strong>ute,<br />
and was inspired by his work on HIV and AIDS<br />
in Africa. At the end of one of his presentations<br />
he encouraged the audience <strong>to</strong> become active in<br />
the HIV and AIDS movement, and suggested that<br />
we begin a chapter of the Student Global AIDS<br />
Campaign.<br />
The idea was attractive <strong>to</strong> me because I had met<br />
so many dynamic student leaders championing<br />
causes such as conflict resolution in Israel and<br />
Palestine and the rights of women of colour in<br />
New York, but no student organisation existed<br />
that dealt w<strong>it</strong>h HIV and AIDS or sustainable<br />
development. A group of students and I came<br />
<strong>to</strong>gether w<strong>it</strong>h the mantra of “health is a human<br />
right” <strong>to</strong> found Columbia Global Justice (CGJ), a<br />
chapter of the Student Global AIDS Campaign.<br />
Through CGJ, I reached out <strong>to</strong> youth on campus,<br />
in New York C<strong>it</strong>y, and worldwide, <strong>to</strong> raise<br />
awareness w<strong>it</strong>h events every two weeks focused<br />
on issues such as international debt and HIV and<br />
AIDS, microbicides, vaccine trials and research,<br />
US funding policies, gender and HIV and AIDS,<br />
and other issues. Our membership grew <strong>to</strong> over<br />
250 students, both undergraduate and graduate,<br />
and our events were diverse ranging from panel<br />
discussions <strong>to</strong> documentary screenings <strong>to</strong><br />
fundraisers <strong>to</strong> letter wr<strong>it</strong>ing and calling campaigns<br />
<strong>to</strong> government representatives.<br />
W<strong>it</strong>h CGJ, I organised New York C<strong>it</strong>y’s first<br />
Student Global AIDS Walk that raised thousands<br />
of dollars for a grassroots organisation in<br />
Zambia, a country where 16.5% of c<strong>it</strong>izens are<br />
living w<strong>it</strong>h HIV and AIDS (UNAIDS: 2003). We<br />
collaborated w<strong>it</strong>h New York Univers<strong>it</strong>y’s New<br />
York C<strong>it</strong>y Student In<strong>it</strong>iative for AIDS <strong>to</strong> host slam<br />
poetry and hip-hop concerts, and sell hundreds<br />
of discount cards for students <strong>to</strong> use in local<br />
shops. The funds raised supplied grassroots<br />
HIV and AIDS in<strong>it</strong>iatives in the developing<br />
world. That year, I also organised Columbia<br />
Univers<strong>it</strong>y’s first <strong>World</strong> AIDS Week.<br />
It was during the <strong>World</strong> AIDS Week that I<br />
met Christian Gladel of the Un<strong>it</strong>ed Nations<br />
Population Fund’s (UNFPA) HIV and AIDS<br />
Branch. He managed the Global Youth Partners<br />
In<strong>it</strong>iative (GYP), which builds the capac<strong>it</strong>y of<br />
young leaders in 30 countries <strong>to</strong> encourage<br />
their governments <strong>to</strong> scale up HIV and AIDS<br />
interventions for young people. I applied <strong>to</strong> intern<br />
at UNFPA and they hired me <strong>to</strong> work on youth<br />
participation in HIV and AIDS.<br />
While working w<strong>it</strong>h the GYP, I was inspired by<br />
their spir<strong>it</strong> of volunteerism and leadership. I was<br />
involved in the important work of assisting young<br />
people <strong>to</strong> effectively drive grassroots change in<br />
their commun<strong>it</strong>ies. I became aware that funding,<br />
opportun<strong>it</strong>ies for employment and participation,<br />
technical assistance, and collaboration exist,<br />
but that young people face many barriers in<br />
accessing these resources due <strong>to</strong> a lack of skills<br />
and the general mistrust that adult leaders have<br />
for young people.<br />
Young people also lack access <strong>to</strong> youth friendly<br />
prevention and treatment information and<br />
services. They are at the mercy of conservative<br />
government agendas that dictate programmes for<br />
them that are ineffective and unscientific, such as<br />
abstinence only education.<br />
67
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
In the summer of 2004 I attended the Oxfam<br />
International Youth Parliament (OIYP) in Sydney,<br />
Australia. At the conference, I met over 300<br />
incredible progressive young people from all<br />
over the world driving change at grassroots level.<br />
The most common challenge that almost all of<br />
us faced was a lack of resources <strong>to</strong> implement<br />
our action plans on a large scale. Funding is<br />
very difficult <strong>to</strong> come by for grassroots in<strong>it</strong>iatives<br />
spearheaded by young people. Similarly, young<br />
people lack training programmes and manuals,<br />
knowledge on how <strong>to</strong> design, implement,<br />
mon<strong>it</strong>or and evaluate the programmes more<br />
effectively, and knowledge of what in<strong>it</strong>iatives and<br />
organisations exist.<br />
W<strong>it</strong>hin UNFPA’s HIV and AIDS Branch, I found<br />
a role model in Jul<strong>it</strong>ta Onabanjo, who was<br />
then a technical advisor specialised in young<br />
people and HIV and AIDS. She was keen on the<br />
development of the alliance, especially <strong>to</strong> build<br />
the capac<strong>it</strong>y of young leaders in HIV and AIDS<br />
worldwide. She spoke w<strong>it</strong>h representatives from<br />
other UN agencies that make up the UNAIDS<br />
Inter-Agency Task Team on Young People and<br />
HIV and AIDS, and inv<strong>it</strong>ed my colleague Mila and<br />
I <strong>to</strong> Geneva, Sw<strong>it</strong>zerland <strong>to</strong> present <strong>to</strong> the Task<br />
Team on Global Youth Coal<strong>it</strong>ion on HIV/AIDS<br />
(GYCA).<br />
At the same time the in<strong>it</strong>ial Task Force of<br />
GYCA decided <strong>to</strong> hold a needs assessment e-<br />
consultation using TakingITglobal technology <strong>to</strong><br />
determine exactly what young leaders in HIV and<br />
AIDS needed <strong>to</strong> succeed in their work. 365 youth<br />
from over 60 countries participated in the month<br />
long consultation, answering specific questions<br />
each week via email, taking care, as much as<br />
possible, <strong>to</strong> solic<strong>it</strong> feedback from young people<br />
they worked w<strong>it</strong>h who did not have access <strong>to</strong> the<br />
Internet. I facil<strong>it</strong>ated the e-consultation w<strong>it</strong>h Mila<br />
and we put <strong>to</strong>gether a report on the challenges<br />
and goals of young people, and suggestions for<br />
the structure and prior<strong>it</strong>ies of the alliance.<br />
Our presentation <strong>to</strong> UNAIDS was successful<br />
in enlisting the support of UN agencies, and<br />
UNAIDS agreed <strong>to</strong> give GYCA a seed grant <strong>to</strong><br />
begin <strong>it</strong>s activ<strong>it</strong>ies. UNFPA pledged support by<br />
creating a pos<strong>it</strong>ion for me w<strong>it</strong>hin the HIV and<br />
AIDS Branch and Adolescent and Youth Cluster<br />
as a consultant <strong>to</strong> develop GYCA.<br />
To begin the alliance, we selected 14 regional<br />
focal points by a compet<strong>it</strong>ive application process.<br />
They were selected on the basis of their<br />
grassroots experience and their abil<strong>it</strong>y <strong>to</strong> reach<br />
vulnerable youth, especially those who are not<br />
ICT-connected. This was a crucial prior<strong>it</strong>y that<br />
came out of the e-consultation, as youth w<strong>it</strong>hout<br />
internet access are often best pos<strong>it</strong>ioned <strong>to</strong><br />
enact change in their commun<strong>it</strong>ies, but lack the<br />
resources and support needed <strong>to</strong> do so.<br />
From the beginning, our main strength was<br />
our e-forum, which now reaches over 1500<br />
young people and grows each day. Through<br />
the forum young people find out about events,<br />
scholarships, job opportun<strong>it</strong>ies, training<br />
resources, and the latest information about HIV<br />
and AIDS. We have encountered many differing<br />
opinions and a great divers<strong>it</strong>y of people on the<br />
forum. GYCA defines ‘youth’ as ages 15-30,<br />
but we have people younger and much older<br />
participating on the forum. They are diverse in<br />
language, gender, religion, national<strong>it</strong>y, ethnic<strong>it</strong>y,<br />
sexual orientation, HIV status, physical disabil<strong>it</strong>y,<br />
and socio-economic status. Young people and<br />
68
Young women intervene in a world w<strong>it</strong>h AIDS<br />
HIV and AIDS is by nature a highly controversial<br />
subject matter as the major<strong>it</strong>y of infections<br />
worldwide occur through sexual intercourse,<br />
which is taboo for many people, including some<br />
of our members. It has been both a challenge<br />
and a joy <strong>to</strong> see the amount of information and<br />
debate on the forum.<br />
As we grew and collaborated w<strong>it</strong>h TakingITglobal<br />
<strong>to</strong> design our interactive capac<strong>it</strong>y building<br />
webs<strong>it</strong>e, we were able <strong>to</strong> reward our young<br />
volunteers sending them <strong>to</strong> international<br />
conferences, by networking them <strong>to</strong>gether for<br />
collaborative projects and fundraising, assisting<br />
them w<strong>it</strong>h grant proposals, applications, CVs, and<br />
abstract-wr<strong>it</strong>ing, providing training opportun<strong>it</strong>ies,<br />
highlighting their work, and creating mechanisms<br />
for networking and partnerships.<br />
In February 2004, we held our first global<br />
advocacy campaign gathering thousands of<br />
students. GYCA organized advocacy and<br />
awareness-raising events in 18 countries. The<br />
events ranged from HIV and gender awareness<br />
sessions for young boys in Pakistan <strong>to</strong> a peaceful<br />
protest in front of the <strong>World</strong> Bank offices in<br />
Zambia calling for debt cancellation for the<br />
world’s 50 Heavily Indebted Poor Countries<br />
(HIPCs).<br />
After the success of February’s campaigns,<br />
UNAIDS called upon GYCA <strong>to</strong> hold a brief e-<br />
consultation <strong>to</strong> provide young people input on<br />
their Prevention Strategy. We recommended<br />
that UNAIDS scale-up efforts especially in the<br />
areas of youth friendly services, life skills based<br />
education, and behaviour change communication<br />
for young men and boys. Members discussed<br />
programmes that are successful in their countries<br />
and those that are obsolete and must be<br />
updated.<br />
Concurrently we launched our global mapping<br />
project, <strong>to</strong> make contact w<strong>it</strong>h local, national,<br />
and regional youth led or youth serving HIV and<br />
AIDS in<strong>it</strong>iatives and networks. In add<strong>it</strong>ion <strong>to</strong><br />
adding these <strong>to</strong> our Global Direc<strong>to</strong>ry searchable<br />
by country, region and thematic focus, we are<br />
working <strong>to</strong> develop partnerships w<strong>it</strong>h these<br />
organisations.<br />
12 country reports were subm<strong>it</strong>ted, and a young<br />
intern at UNFPA’s HIV/AIDS Branch, Sun<strong>it</strong>a<br />
Grote, and <strong>myself</strong>, compiled and ed<strong>it</strong>ed the<br />
reports in<strong>to</strong> a publication published by UNFPA<br />
called “Our Voices, Our Future: Young People<br />
Report on Progress Made on the UNGASS<br />
Declaration of Comm<strong>it</strong>ment on HIV and AIDS.”<br />
In May 2004, I was inv<strong>it</strong>ed <strong>to</strong> participate in the<br />
International Youth Forum on young people’s<br />
sexual and reproductive health and rights and the<br />
Millennium Development Goals held in Buenos<br />
Aires, Argentina. The forum was a wonderfully<br />
refreshing opportun<strong>it</strong>y for me <strong>to</strong> meet w<strong>it</strong>h 60<br />
progressive young people from all over the world<br />
who share common beliefs about human rights<br />
and youth participation. We deconstructed four of<br />
the UN’s Millennium Development Goals (MDGs):<br />
education, gender equal<strong>it</strong>y, maternal health, and<br />
HIV and AIDS, and wrote a booklet on where<br />
sexual and reproductive health and rights f<strong>it</strong><br />
in<strong>to</strong> the MDGs and why youth are crucial <strong>to</strong> the<br />
attainment of the targets by 2015.<br />
On June 2nd 2004, GYCA and GYP, w<strong>it</strong>h the<br />
support of UNAIDS, UNFPA, and the other<br />
cosponsors, organised a Breakfast w<strong>it</strong>h Young<br />
People. We sat w<strong>it</strong>h Ministers of Health,<br />
delegates, ambassadors, and heads of UN<br />
agencies <strong>to</strong> dialogue directly on the needs of<br />
young people worldwide on HIV and AIDS, about<br />
the findings of the report, and how governments<br />
can scale-up HIV and AIDS interventions <strong>to</strong><br />
effectively reach us.<br />
The Breakfast was so effective that our<br />
recommendations were taken in<strong>to</strong> account<br />
throughout the day, especially in the Prevention<br />
Roundtable when delegates from three nations<br />
(Guatemala, Chile, and Gambia) mentioned our<br />
report and the needs of young people and HIV<br />
and AIDS.<br />
This was an opportun<strong>it</strong>y <strong>to</strong> speak frankly about<br />
why and how young people are infected and<br />
affected, and <strong>to</strong> encourage decision-makers <strong>to</strong><br />
look at the context that creates vulnerabil<strong>it</strong>y:<br />
poverty, unemployment, gender inequal<strong>it</strong>y,<br />
conflict, and stigma and discrimination. It was<br />
also an opportun<strong>it</strong>y <strong>to</strong> challenge leaders on why<br />
they have not comm<strong>it</strong>ted sufficient resources <strong>to</strong><br />
HIV and AIDS interventions for young people<br />
which are highly cost effective, and why they<br />
have not made use of the large pool of young<br />
activists eager <strong>to</strong> enact change and halt the<br />
pandemic.<br />
Currently GYCA is spearheading efforts for<br />
the Toron<strong>to</strong> Youth Force at the upcoming XVI<br />
International AIDS Conference in Toron<strong>to</strong><br />
(August 13-18) w<strong>it</strong>h many other partners. We are<br />
organizing a three day capac<strong>it</strong>y-building preconference,<br />
training young people in advocacy,<br />
assisted young people <strong>to</strong> wr<strong>it</strong>e abstracts and<br />
apply for scholarships through a free online e-<br />
course, helping them <strong>to</strong> fundraise, developing<br />
69
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
an interactive webs<strong>it</strong>e (http://youth.aids2006.org)<br />
and working on post-conference follow up plans.<br />
GYCA now has a North Secretariat based in<br />
New York by the Un<strong>it</strong>ed Nations at the Global<br />
Youth Action Network, and a South Secretariat<br />
based in Port Harcourt, Nigeria, at Development<br />
Partnership International.<br />
GYCA contributed <strong>to</strong> the youth programme at the<br />
International Conference on AIDS and STIs in<br />
Africa, held in Abuja, Nigeria, in December 2005.<br />
At the Conference I connected w<strong>it</strong>h hundreds of<br />
motivated and inspiring young people and was<br />
able <strong>to</strong> see how much potential GYCA has <strong>to</strong><br />
build new leadership.<br />
We are offering 3 free e-courses <strong>to</strong> young people<br />
who apply on Project Management, Grant<br />
Proposal Wr<strong>it</strong>ing and Fundraising, and Pol<strong>it</strong>ical<br />
Advocacy. Each course culminates in a nationallevel<br />
project or campaign that GYCA staff (there<br />
are now six full time staff members and two<br />
interns) help <strong>to</strong> implement, mon<strong>it</strong>or and evaluate.<br />
GYCA’s 12 2006 Regional Focal Points are<br />
continuing the mapping and global networking<br />
process, and are in the process of choosing<br />
National Coordina<strong>to</strong>rs, further building our<br />
infrastructure. They are holding local gatherings<br />
this summer <strong>to</strong> involve young people working on<br />
HIV and AIDS at the grassroots level who may<br />
not have access <strong>to</strong> Internet.<br />
GYCA is also coordinating a Youth Summ<strong>it</strong><br />
w<strong>it</strong>h Advocates for Youth and UNFPA for the<br />
UNGASS +5 AIDS 2006 Review Meeting at the<br />
UN. 60 young people from all over the world,<br />
some of whom are wr<strong>it</strong>ing national youth shadow<br />
reports on their governments’ progress in<br />
achieving UNGASS targets for youth, will come<br />
<strong>to</strong>gether for an advocacy training and participate<br />
in many events at the UN Secretariat in New<br />
York. Five GYCA members are currently official<br />
youth delegates of their governments for this<br />
meeting. To supplement these efforts we have<br />
been lobbying country missions <strong>to</strong> ensure that<br />
young people and sexual and reproductive health<br />
are included in their statements and in their<br />
negotiations on the outcome document of the<br />
meeting.<br />
At the ground level GYCA has helped scale up<br />
several projects, most notably a campaign in<br />
Egypt where GYCA members have teamed up<br />
w<strong>it</strong>h the National Democratic Party <strong>to</strong> in<strong>it</strong>iate a<br />
campaign against Female Gen<strong>it</strong>al Mutilation.<br />
GYCA is currently holding and contributing <strong>to</strong><br />
trainings for young leaders in Poland and in<br />
Trinidad & Tobago.<br />
We continue <strong>to</strong> grow at a rapid pace and I feel<br />
that we are truly capable of opening doors for<br />
young leaders <strong>to</strong> realize their amb<strong>it</strong>ions and <strong>to</strong><br />
become leg<strong>it</strong>imate ac<strong>to</strong>rs in response <strong>to</strong> HIV and<br />
AIDS.<br />
70<br />
Born: 1982<br />
Country: Un<strong>it</strong>ed States of America<br />
Organisations: Global Youth Coal<strong>it</strong>ion<br />
on HIV and AIDS, Student Global AIDS<br />
Campaign, Columbia Global Justice<br />
(CGJ), Global Youth Partners In<strong>it</strong>iative<br />
(GYP), Oxfam International Youth<br />
Parliament (IYP)<br />
Campaigns for: assisting young<br />
people <strong>to</strong> effectively drive grassroots<br />
in<strong>it</strong>iatives change in their<br />
commun<strong>it</strong>ies, using ICTs
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Felic<strong>it</strong>a Hikuam<br />
It was enraging <strong>to</strong> me that the world continues <strong>to</strong><br />
move on while millions of productive Africans and<br />
young people around the world die from a preventable<br />
illness, and one that can be treated <strong>to</strong> ensure a longer<br />
productive life!.<br />
I can remember being around 11 years old in<br />
the late ‘80s when the first cases of HIV were<br />
registered in Namibia and my mother was talking<br />
about colleagues who were diagnosed as living<br />
w<strong>it</strong>h HIV. Fear tactics were the order of the day<br />
for HIV campaigning and my mother’s way of<br />
explaining HIV <strong>to</strong> us was bringing home a book<br />
of people w<strong>it</strong>h STIs and dying of AIDS-related<br />
illnesses: These images are still qu<strong>it</strong>e vivid in my<br />
mind.<br />
I had known about HIV in our commun<strong>it</strong>y since<br />
I was a girl; however by the time I was a young<br />
woman and returned <strong>to</strong> Namibia after my studies<br />
abroad, the pandemic was h<strong>it</strong>ting much closer <strong>to</strong><br />
home. Over the past five years I’ve buried many<br />
of my relatives due <strong>to</strong> AIDS-related death and<br />
am increasingly dealing w<strong>it</strong>h the effects of HIV on<br />
my life and my family’s livelihood. I work in HIV<br />
not because <strong>it</strong> is helping ‘the beneficiaries’, but<br />
because I am living w<strong>it</strong>h HIV in my family. It is my<br />
real<strong>it</strong>y and not something out there somewhere<br />
affecting other people, but right here w<strong>it</strong>h me<br />
every day.<br />
I decided <strong>to</strong> go in<strong>to</strong> the communications field,<br />
and particularly development communication,<br />
because, from a very young age, I was aware<br />
of the power of information in transforming<br />
people’s lives. I realised that <strong>to</strong> contribute <strong>to</strong><br />
the overall development of my country I had <strong>to</strong><br />
work in a field that I was passionate about and<br />
use my communication skills <strong>to</strong> contribute <strong>to</strong> the<br />
response <strong>to</strong> a disease that was negating our<br />
development and affecting me so personally.<br />
One of the most moving experiences w<strong>it</strong>h<br />
HIV in my career was on my first field trip <strong>to</strong> a<br />
home based care project run by the Namibian<br />
Red Cross in the north of Namibia. On the<br />
second day of the trip we had the opportun<strong>it</strong>y <strong>to</strong><br />
accompany a care facil<strong>it</strong>a<strong>to</strong>r on her vis<strong>it</strong> <strong>to</strong> one<br />
of her ‘clients’, an 18 year old woman living w<strong>it</strong>h<br />
HIV. This young woman was bedridden w<strong>it</strong>h an<br />
AIDS related illness. She could not vis<strong>it</strong> the <strong>to</strong>ilet<br />
or wash herself and was relying heavily on the<br />
support of the care facil<strong>it</strong>a<strong>to</strong>r and her family. I<br />
saw human<strong>it</strong>y working first hand through this<br />
Red Cross volunteer <strong>to</strong> protect the dign<strong>it</strong>y of<br />
this young woman. It was enraging <strong>to</strong> me that<br />
the world continues <strong>to</strong> move on while millions of<br />
productive Africans and young people around the<br />
world die from a preventable illness, and one that<br />
can be treated <strong>to</strong> ensure a longer productive life!<br />
This experience fuelled my resolve <strong>to</strong> contribute<br />
in some way <strong>to</strong> the empowerment of women and<br />
young people who might not be living w<strong>it</strong>h HIV<br />
yet, but also <strong>to</strong> protect the dign<strong>it</strong>y and human<br />
rights of those who are living w<strong>it</strong>h HIV.<br />
71
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
At the Namibia Red Cross I managed a health<br />
and development communication partnership<br />
w<strong>it</strong>h a South African NGO called Soul C<strong>it</strong>y. This<br />
partnership aimed <strong>to</strong> encourage behaviour<br />
change through high qual<strong>it</strong>y communication <strong>to</strong>ols<br />
including radio, television and print material.<br />
In Namibia, over 90% of the population c<strong>it</strong>e<br />
radio as their primary source of information.<br />
Mass media reached the people and <strong>kept</strong><br />
them informed, as well as influenced the public<br />
agenda. In relation <strong>to</strong> the HIV pandemic in<br />
Southern Africa, mass media has already proven<br />
<strong>to</strong> significantly increase public awareness and<br />
influence att<strong>it</strong>udes. My technical knowledge<br />
and experience w<strong>it</strong>h radio, television and<br />
print material development was a significant<br />
contribution <strong>to</strong> the five year Desert Soul, Health<br />
and Development Communication Project. In the<br />
two years I was there, we developed the media<br />
plan and mapped which vehicle <strong>to</strong> use for which<br />
audience, and which health and development<br />
<strong>to</strong>pics were most relevant <strong>to</strong> the Namibian<br />
context. We researched and developed a brand<br />
for the project, which would be the driving force<br />
behind the credibil<strong>it</strong>y and recogn<strong>it</strong>ion of the<br />
products. I coordinated formative research for the<br />
adult HIV and AIDS booklet, ‘AIDS Action Now!’<br />
and commissioned the television aspect of the<br />
project, the production of a Namibian children’s<br />
segment. I negotiated the radio partnership<br />
and the layout of the print booklet, w<strong>it</strong>h over 1,5<br />
million copies printed.<br />
The Desert Soul Project was created from the<br />
development, in 2001, of a youth booklet by<br />
the Namibia Red Cross called ‘Choose Life’.<br />
W<strong>it</strong>h 400 000 copies printed and distributed <strong>to</strong><br />
all corners of the country, this booklet had the<br />
biggest print-run of any print material in Namibia.<br />
An evaluation of the booklet has shown that<br />
‘Choose Life’ has been quoted by a major<strong>it</strong>y of in<br />
and out of school youth as one of their primary<br />
sources of information on AIDS, issues affecting<br />
orphans and vulnerable children, and on general<br />
life skills.<br />
At the end of 2003, two years after joining<br />
the Namibian Red Cross I moved <strong>to</strong> Geneva,<br />
Sw<strong>it</strong>zerland <strong>to</strong> join the International Federation<br />
of Red Cross and Red Crescent Societies<br />
(IFRC) Secretariat as Coordina<strong>to</strong>r for the<br />
Federation’s global HIV and AIDS Anti-Stigma<br />
Campaign. ‘The truth about AIDS - Pass <strong>it</strong><br />
on...’ campaign works <strong>to</strong> reduce stigma and<br />
discrimination against people living w<strong>it</strong>h HIV<br />
and AIDS (PLWHA) through partnerships w<strong>it</strong>h<br />
the global network of people living w<strong>it</strong>h HIV<br />
and AIDS (GNP) and <strong>it</strong>s regional and national<br />
72<br />
affiliates. W<strong>it</strong>h advocacy for the human rights<br />
and empowerment of PLWHA as one of <strong>it</strong>s main<br />
objectives, this campaign supports national Red<br />
Cross and Red Crescent societies in making<br />
use of advocacy opportun<strong>it</strong>ies <strong>to</strong> reduce stigma<br />
in their commun<strong>it</strong>ies.<br />
As coordina<strong>to</strong>r of the campaign, I coordinate<br />
global coherence of Red Cross and Red<br />
Crescent anti-stigma campaigns, produce<br />
resource material, and support national societies<br />
in implementing activ<strong>it</strong>ies. Since beginning<br />
work on the campaign, I have developed<br />
two communications packs, three campaign<br />
newsletters, and coordinated three key date<br />
events, which include supporting National<br />
Society events for <strong>World</strong> Red Cross and Red<br />
Crescent Day and <strong>World</strong> AIDS Day. At the XV<br />
International AIDS Conference, in 2004, I also<br />
contributed <strong>to</strong> our partnership w<strong>it</strong>h PLWHA<br />
and raised the significance of the greater<br />
involvement of PLWHA in all aspects of the HIV<br />
and AIDS response.<br />
The bulk of our anti-stigma work is implemented<br />
by volunteers and staff and aimed at reducing<br />
stigma w<strong>it</strong>hin the organisation and in<br />
commun<strong>it</strong>ies. W<strong>it</strong>h more than 200,000 PLWHA<br />
w<strong>it</strong>hin the organisation, the Federation <strong>it</strong>self has<br />
had <strong>to</strong> go through a significant change process <strong>to</strong><br />
become a better home for PLWHA and a better<br />
partner for GNP+.<br />
I help raise the profile of people living w<strong>it</strong>h HIV<br />
and AIDS by creating a platform for their voices <strong>to</strong><br />
be heard at international fora. One such an event<br />
was the marking of the 10th anniversary of the<br />
greater involvement of people living w<strong>it</strong>h HIV and<br />
AIDS (GIPA) Principle on the 1st of December<br />
2004 through a joint project w<strong>it</strong>h GNP+. I also<br />
support the voices of people living w<strong>it</strong>h HIV and<br />
AIDS through media materials including press<br />
releases, opinion pieces and s<strong>to</strong>ries for different<br />
internal and external audiences.<br />
I work very closely w<strong>it</strong>h young people in the<br />
Red Cross and Red Crescent who have great<br />
enthusiasm and comm<strong>it</strong>ment <strong>to</strong> the cause. In<br />
many countries our stigma reduction work is<br />
driven by young people who use innovative<br />
activ<strong>it</strong>ies like ‘riding the bus’ in Jamaica,<br />
concerts, candle light marches and sporting<br />
activ<strong>it</strong>ies around the rest of the world. Because<br />
of their enthusiasm, comm<strong>it</strong>ment and creativ<strong>it</strong>y,<br />
young people have been able <strong>to</strong> examine their<br />
respective contexts and identify issues of stigma,<br />
and ways these can be addressed in their<br />
commun<strong>it</strong>ies. Because our movement is built on
Young women intervene in a world w<strong>it</strong>h AIDS<br />
volunteerism, our HIV and AIDS work is driven<br />
by comm<strong>it</strong>ted and dedicated people in different<br />
commun<strong>it</strong>ies around the world.<br />
National societies work w<strong>it</strong>h PLWHA, youth<br />
and commun<strong>it</strong>y members through advocacy<br />
opportun<strong>it</strong>ies such as <strong>World</strong> Red Cross and Red<br />
Crescent Day or <strong>World</strong> AIDS Day, organising<br />
activ<strong>it</strong>ies such as marches, speeches, concerts,<br />
commun<strong>it</strong>y meetings and sporting events. They<br />
use the credibil<strong>it</strong>y of the Red Cross and Red<br />
Crescent emblem <strong>to</strong> show solidar<strong>it</strong>y w<strong>it</strong>h PLWHA<br />
and through communication <strong>to</strong>ols work <strong>to</strong> break<br />
down the myths and fears surrounding HIV.<br />
A recent evaluation of the Federation’s Global<br />
HIV and AIDS Programme has identified that<br />
the Red Cross and Red Crescent, because of <strong>it</strong>s<br />
mandate as the largest human<strong>it</strong>arian organisation<br />
in the world, is considered a logical choice <strong>to</strong><br />
spearhead the fight against HIV related stigma in<br />
partnership w<strong>it</strong>h PLWHA.<br />
Two thirds of the 181 national societies have<br />
campaigned for the reduction of stigma w<strong>it</strong>h the<br />
support of the campaign coordina<strong>to</strong>r in Geneva.<br />
The global anti-stigma campaign is appreciated<br />
by external partners who often utilise resources<br />
developed by the campaign.<br />
The strength of the Red Cross and Red Crescent<br />
network is <strong>it</strong>s commun<strong>it</strong>y base. W<strong>it</strong>h 97 million<br />
volunteers around the world <strong>it</strong> has household<br />
access <strong>to</strong> commun<strong>it</strong>ies where most other<br />
organisations do not. National Societies work<br />
w<strong>it</strong>h commun<strong>it</strong>y leaders and pol<strong>it</strong>ical leaders <strong>to</strong><br />
advocate for the empowerment and involvement<br />
of PLWHA in their own care and in the overall<br />
HIV response.<br />
Red Cross and Red Crescent leadership has,<br />
from the Federation governing board level <strong>to</strong><br />
National Society management level, s<strong>to</strong>od<br />
side-by-side publicly w<strong>it</strong>h PLWHA leadership,<br />
giving the message that PLWHA are crucial<br />
<strong>to</strong> the global AIDS response. The anti-stigma<br />
campaign encourages and supports this work<br />
w<strong>it</strong>h resources and technical support <strong>to</strong> national<br />
societies and their partners.<br />
The greatest testimony <strong>to</strong> the success of the<br />
campaign impact is in the words of a woman<br />
living w<strong>it</strong>h HIV and AIDS in Savannakhet<br />
province in the Lao People’s Democratic<br />
Republic who explained that “until the Red<br />
Cross came <strong>to</strong> vis<strong>it</strong> and bring these activ<strong>it</strong>ies,<br />
our families would not let us eat or join the<br />
family or the commun<strong>it</strong>y.”<br />
Born: 1979<br />
Country: Namibia<br />
Organisations: Namibia<br />
Red Cross, IFRC<br />
Campaigns for:<br />
empowerment and<br />
dign<strong>it</strong>y of women and<br />
girls; change behaviour<br />
and health care<br />
73
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Sophie Dilm<strong>it</strong>is<br />
It was important <strong>to</strong> ensure that no one would go<br />
through this terrifying period of desperate uncertainty<br />
and stress that I went through.<br />
I am now 30 years old and have been living w<strong>it</strong>h<br />
HIV for 12 years. In 1999, receiving an HIVpos<strong>it</strong>ive<br />
diagnosis was like receiving a death<br />
sentence. The complete lack of information<br />
and knowledge available left me ready <strong>to</strong> give<br />
up. It was only w<strong>it</strong>h strong family support that<br />
I gathered information on HIV and AIDS. I<br />
communicated w<strong>it</strong>h specialists all over the world,<br />
read every publication available and spoke <strong>to</strong><br />
every experienced HIV-pos<strong>it</strong>ive person I could<br />
speak <strong>to</strong>.<br />
It was important <strong>to</strong> ensure that no one would<br />
go through this terrifying period of desperate<br />
uncertainty and stress that I went through.<br />
Although I was spreading the information<br />
collected on a one <strong>to</strong> one basis w<strong>it</strong>h other newly<br />
diagnosed patients through my doc<strong>to</strong>r, <strong>it</strong> was<br />
clear, that this was not enough.<br />
Attending the 13th International AIDS conference<br />
in Durban 2000 changed my life. The information<br />
I received from the lecturers and HIV pos<strong>it</strong>ive<br />
people, the pos<strong>it</strong>ive att<strong>it</strong>udes and the vast<br />
information which suddenly became available,<br />
sent me back <strong>to</strong> Zimbabwe w<strong>it</strong>h an enthusiasm<br />
<strong>to</strong> take up this challenge, in an open and public<br />
manner, breaking the silence that surrounds HIV<br />
and AIDS.<br />
I disclosed my status w<strong>it</strong>h a series of<br />
newspaper articles and radio interviews,<br />
tackling a section of the Zimbabwean<br />
commun<strong>it</strong>y, which was being neglected by<br />
the overworked AIDS prevention groups<br />
(themselves struggling <strong>to</strong> stay afloat in the tide<br />
that has h<strong>it</strong> this country). Apart from giving<br />
talks <strong>to</strong> support groups, management and staff<br />
of many companies, I began talking <strong>to</strong> school<br />
74<br />
children and the response was incredible w<strong>it</strong>h<br />
more and more schools asking me <strong>to</strong> address<br />
their children, class by class.<br />
Following many recommendations and<br />
discussions, in February 2002, Choose Life was<br />
registered, according <strong>to</strong> the laws in Zimbabwe as<br />
The Choose Life Trust.<br />
To date, the organisation has spoken w<strong>it</strong>h<br />
over 7000 young people and implemented<br />
programmes in over 29 schools throughout<br />
Zimbabwe.<br />
Choose Life is affiliated <strong>to</strong> other organisations<br />
that deal w<strong>it</strong>h HIV-pos<strong>it</strong>ive youths directly. Most of<br />
<strong>it</strong>’s work is in schools w<strong>it</strong>h young people who do<br />
not know their HIV status.<br />
Choose Life’s goal is <strong>to</strong> live in an environment<br />
that nurtures and protects young people, w<strong>it</strong>h<br />
the hope that they will have accurate information<br />
about their sexual and reproductive health and<br />
rights. All young people should be able <strong>to</strong> protect<br />
themselves against HIV infection and have<br />
information on all issues relating <strong>to</strong> HIV and<br />
AIDS.<br />
Through education, knowledge can be passed<br />
on, thereby conquering the fear, ignorance and<br />
silence that surround HIV and AIDS. Knowledge,<br />
accompanied by young people talking about<br />
changing their behaviour and receiving support<br />
from their commun<strong>it</strong>y inst<strong>it</strong>utions can make a<br />
difference. Choose Life hopes <strong>to</strong> reinforce and<br />
support the process of change that all young<br />
people have <strong>to</strong> go through if they want <strong>to</strong> take<br />
responsibil<strong>it</strong>y for their actions and live healthy<br />
pos<strong>it</strong>ive lives, irrespective of their HIV status.
Young women intervene in a world w<strong>it</strong>h AIDS<br />
On a personal note, I began Choose<br />
Life because I wanted <strong>to</strong> protect other<br />
young people from being infected<br />
w<strong>it</strong>h HIV and I wanted <strong>to</strong> give them<br />
the information and education I never<br />
had concerning HIV and AIDS.<br />
Although there are lim<strong>it</strong>ed<br />
studies portraying HIV infection<br />
rates amongst youth generally<br />
in Zimbabwe, figures show that<br />
80% of all new infections occur in<br />
young women and girls, (UNAIDS;<br />
Facing the future <strong>to</strong>gether, July<br />
2004), yet they are often ignored<br />
in debates about treatment, stigma<br />
and discrimination. Contrary<br />
<strong>to</strong> some studies showing that<br />
awareness of HIV and AIDS in<br />
Zimbabwe is high; some people<br />
still lack basic knowledge about<br />
this virus. Currently there are very<br />
few educational programmes being<br />
implemented in schools around<br />
Zimbabwe, perpetuating this lack of<br />
knowledge.<br />
Who better <strong>to</strong> teach young people<br />
about what <strong>it</strong> is like <strong>to</strong> live w<strong>it</strong>h HIV<br />
than someone who is young, HIV<br />
pos<strong>it</strong>ive and not ashamed or afraid<br />
<strong>to</strong> talk about <strong>it</strong>? I wanted <strong>to</strong> give<br />
HIV a face, making <strong>it</strong> realistic and<br />
something they could relate <strong>to</strong>. I<br />
did not want them <strong>to</strong> think ‘this will<br />
never happen <strong>to</strong> me’ like I did! I also<br />
wanted other young infected people<br />
<strong>to</strong> know that being HIV pos<strong>it</strong>ive did not have <strong>to</strong><br />
be a shameful thing and that there are many<br />
things that you can do <strong>to</strong> prolong your life. In<br />
the process I was not only helping others but I<br />
think I was assisting <strong>myself</strong> come <strong>to</strong> terms w<strong>it</strong>h<br />
my own HIV status. Even though <strong>it</strong> is tiring and<br />
very draining being able <strong>to</strong> connect w<strong>it</strong>h people<br />
on such a deep level makes <strong>it</strong> worth <strong>it</strong>!<br />
Choose Life has a very strong focus mostly on<br />
prevention. HIV pos<strong>it</strong>ive people hold the key <strong>to</strong><br />
prevention. We can e<strong>it</strong>her choose <strong>to</strong> carry on<br />
spreading the virus or choose not <strong>to</strong>. Most people<br />
who transm<strong>it</strong> HIV do <strong>it</strong> because they have never<br />
been tested and do not know their HIV status.<br />
I believe that by talking openly about my status<br />
and showing people that there are things you<br />
can do once you know your status, and that <strong>it</strong><br />
does not have <strong>to</strong> be a shameful thing <strong>to</strong> have<br />
HIV, more people would be tested, and access<br />
the support and care they need, and the infection<br />
rate would decrease.<br />
I would be lying if I said there weren’t more than<br />
a few days in a year where I think <strong>to</strong> <strong>myself</strong> ‘life<br />
would be so much easier if I did not have HIV’<br />
but looking back over the past seven years, if<br />
someone gave me the chance, I don’t know<br />
how much I would change. My experiences,<br />
both pos<strong>it</strong>ive and negative have been so rich<br />
that I often ask <strong>myself</strong> ‘Where would I be<br />
had I not faced my fear, been tested for HIV<br />
and discovered my status?’ Once I collected<br />
information about HIV and dealt w<strong>it</strong>h the fact<br />
that someday I am, like all of us, going <strong>to</strong> die<br />
and came <strong>to</strong> terms w<strong>it</strong>h the fact that I was HIV<br />
pos<strong>it</strong>ive, life as I knew <strong>it</strong> did change, but for the<br />
better.<br />
There are always two sides <strong>to</strong> a coin and <strong>it</strong> really<br />
is our choice which side we choose <strong>to</strong> accept<br />
as our real<strong>it</strong>y. We can e<strong>it</strong>her carry on being the<br />
‘victim’ or rise above <strong>it</strong> all and become the ‘vic<strong>to</strong>r’<br />
of our lives. Knowing my status helped me <strong>to</strong><br />
take action and be proactive. Most people see<br />
75
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
an HIV pos<strong>it</strong>ive diagnosis as a death sentence. It<br />
became my ‘Wake up Call’!<br />
We don’t always realise the value of life until <strong>it</strong><br />
is threatened so remember <strong>to</strong> always respect,<br />
protect and love yourself and your body. Every<br />
time I find <strong>myself</strong> getting down about life I remind<br />
<strong>myself</strong> that <strong>to</strong>day I am healthy and well and I<br />
have <strong>to</strong>day!<br />
Even though life at times is hard, I am exc<strong>it</strong>ed<br />
about my future and all the opportun<strong>it</strong>ies and<br />
difficulties that will come my way. As Saint<br />
Francis of Assisi once said, “GOD grant me the<br />
seren<strong>it</strong>y <strong>to</strong> accept the things I cannot change,<br />
courage <strong>to</strong> change the things I can and the<br />
wisdom <strong>to</strong> know the difference.” HIV is not the<br />
enemy and has and will be my greatest teacher<br />
in life.<br />
Most importantly, take responsibil<strong>it</strong>y for your<br />
life and your body. Always remember this is<br />
your life and your body! Make sure you make<br />
informed choices. Know and understand the<br />
consequences of your actions and remember<br />
KNOWLEDGE IS POWER but <strong>it</strong> is useless if you<br />
do not use <strong>it</strong>!<br />
76<br />
Born: 1976<br />
Country: Zimbabwe<br />
Organisations: Choose<br />
Life, ICW<br />
Campaigns for:<br />
young people’s<br />
involvement in HIV<br />
and AIDS campaigns,<br />
informative and pos<strong>it</strong>ive<br />
representation of HIV<br />
and AIDS in the media
Young women intervene in a world w<strong>it</strong>h AIDS<br />
TOOL BOX<br />
Attract Attention<br />
Media<br />
There are two key elements in making news. Your article or s<strong>to</strong>ry must<br />
be fresh and something that will interest people or that they will be able <strong>to</strong><br />
relate <strong>to</strong>. The media can play an extremely powerful role in HIV and AIDS<br />
but often they don’t and sometimes they need <strong>to</strong> be educated on issues<br />
relating <strong>to</strong> HIV and AIDS.<br />
The media want information <strong>to</strong> be:<br />
• Relevant<br />
• Educational<br />
• Informative<br />
• Interesting<br />
• Unusual<br />
• Supplemented w<strong>it</strong>h graphics and images<br />
• Honest<br />
• Fair<br />
When talking <strong>to</strong> media people, be prepared and persuasive. Have in mind<br />
three key issues that you want <strong>to</strong> come out of that interview. Be accurate<br />
and ensure there is a follow up.<br />
When working w<strong>it</strong>h the media:<br />
• Correct them if they use incorrect language for example often reporters<br />
talk about AIDS victims and sufferers or AIDS patients when referring<br />
<strong>to</strong> people living w<strong>it</strong>h HIV and AIDS. Explain terms like PLWA’s and CD4<br />
counts... etc.<br />
• Break barriers of silence, dispelling myths and misconceptions<br />
• Give new sources of information<br />
• Keep <strong>it</strong> fresh. <strong>If</strong> something is happening don’t wa<strong>it</strong> five days for <strong>it</strong> <strong>to</strong> h<strong>it</strong> the<br />
news<br />
• Plan ahead and have a media strategy<br />
• Be proactive. Contact the media and tell them you have an interesting<br />
s<strong>to</strong>ry for them<br />
• Involve them from the beginning of your project so that you develop a<br />
relationship w<strong>it</strong>h them<br />
• Be clear about who you are representing. Are you doing this in your<br />
personal capac<strong>it</strong>y or are you representing an organisation<br />
• Always make sure you feel comfortable about the location that the<br />
77
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
interview will be held<br />
• <strong>If</strong> you are going <strong>to</strong> be on television, wear clothing that is simple, w<strong>it</strong>hout<br />
large patterns, so that <strong>it</strong> is not distracting<br />
• Think ahead about whether you would like <strong>to</strong> be pho<strong>to</strong>graphed and if you<br />
are not comfortable w<strong>it</strong>h this, don’t let anyone pressure you<br />
• Try and obtain information of what kind of questions they will ask so that<br />
you can prepare<br />
• Use the KISS strategy. Keep <strong>it</strong> Straight and Simple<br />
• <strong>If</strong> there is a question that you do not want <strong>to</strong> answer don’t feel pressured<br />
• Always remember you can s<strong>to</strong>p an interview any time you want.<br />
Answering techniques<br />
• Be brief<br />
• Answer all questions directly relating <strong>to</strong> the question<br />
• Use words that come naturally <strong>to</strong> you<br />
• Try not <strong>to</strong> use acronyms, as people might not know what you are talking<br />
about, but if you do, make sure <strong>to</strong> explain them<br />
• Avoid Yes or No answers, always expand your answers so that <strong>it</strong> becomes<br />
a conversation.<br />
Journalists might ask you questions that are<br />
• Factual – who, what, where, why, when and how<br />
• Explana<strong>to</strong>ry – In what way....<br />
• Justifying – What do you think....<br />
• Leading – Should we consider...<br />
• Hypothetical – Suppose we did <strong>it</strong> this way...<br />
• Alternative – This is intended <strong>to</strong> make a decision – should we do this....<br />
• Coordinating - Paving the way forward, can we conclude that this would be<br />
the way forward...<br />
Add<strong>it</strong>ional things <strong>to</strong> remember in an interview and/or<br />
presentation<br />
• Be aware of using ‘them and us’ language, when referring <strong>to</strong> HIV pos<strong>it</strong>ive<br />
and negative people<br />
• Remember a boring speaker can make a two minute speech seem <strong>to</strong>o<br />
long but an interesting speaker can make a five hour long speech seem <strong>to</strong>o<br />
short!<br />
• <strong>If</strong> you are standing, stand up straight, don’t lean on a ledge<br />
• Use notes and don’t read your speech. Look up and connect w<strong>it</strong>h your<br />
audience<br />
• Maintain eye contact w<strong>it</strong>h everyone in the room and not just w<strong>it</strong>h one<br />
person<br />
• Only use humour if you have <strong>to</strong>, this applies <strong>to</strong> irony and sarcasm.<br />
78
Pioneers
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Asunta Wagura<br />
It <strong>to</strong>ok me several months <strong>to</strong> come <strong>to</strong> terms w<strong>it</strong>h the<br />
b<strong>it</strong>ter truth and the real<strong>it</strong>y. ... At the beginning I was<br />
in shock, then anger, anger mounted <strong>to</strong> heartbreak,<br />
heartbreak <strong>to</strong> grief, grief <strong>to</strong> surrender and, finally,<br />
acceptance.<br />
Since 1984 when the first case of AIDS was<br />
discovered in Kenya, <strong>it</strong> remained a mystery.<br />
Those suspected <strong>to</strong> be infected were taken <strong>to</strong><br />
be sexually immoral members of the commun<strong>it</strong>y.<br />
There was so much fear and stigma and people<br />
were dying miserably, w<strong>it</strong>hout support from their<br />
families, hosp<strong>it</strong>al staff and the commun<strong>it</strong>y at<br />
large. Religious leaders were up in arms that HIV<br />
pos<strong>it</strong>ive people were sinners and fornica<strong>to</strong>rs, who<br />
were responsible for other people’s suffering.<br />
In fact, they had only themselves <strong>to</strong> blame for<br />
their suffering and they deserved what they were<br />
going through.<br />
The single hardest day of my life was in 1988,<br />
when I heard w<strong>it</strong>h my own ears, “Asunta, I am<br />
sorry, you have AIDS”. I was <strong>to</strong>ld that I had six<br />
months <strong>to</strong> live. Everybody including the pas<strong>to</strong>r<br />
and my own family were preparing for my death.<br />
I did not fear dying from the disease, but I feared<br />
living w<strong>it</strong>h the truth. It <strong>to</strong>ok me several months <strong>to</strong><br />
come <strong>to</strong> terms w<strong>it</strong>h the b<strong>it</strong>ter truth and the real<strong>it</strong>y.<br />
I <strong>kept</strong> saying, “<strong>it</strong> isn’t possible! This can’t be real!<br />
It can’t be me.” Many times I wished I were in<br />
a dream. For three miserable and dark years,<br />
I suffered the faces of agony. At the beginning<br />
I was in shock, then anger, anger mounted <strong>to</strong><br />
heartbreak, heartbreak <strong>to</strong> grief, grief <strong>to</strong> surrender<br />
and, finally, acceptance.<br />
Once I had accepted the truth, I expected<br />
everyone else would accept <strong>it</strong> <strong>to</strong>o. I was wrong.<br />
It turned out that instead, I received rejection,<br />
isolation, anger and humiliation. I was not at all<br />
prepared that everyone who loved me would go<br />
through the same issues. This however did not<br />
s<strong>to</strong>p me. I had a duty <strong>to</strong>wards Kenyans and the<br />
whole world. I did not choose <strong>to</strong> be infected w<strong>it</strong>h<br />
this dreaded AIDS virus.<br />
80<br />
As cofounder of KENWA, my mission has been<br />
<strong>to</strong> ensure that nobody experiences the same<br />
stigma and isolation I faced when I tested HIV<br />
pos<strong>it</strong>ive. In my endeavours, I preach compassion,<br />
dign<strong>it</strong>y, courage, awareness of risk, the need for<br />
un<strong>it</strong>y among people infected w<strong>it</strong>h HIV, and the<br />
promise of hope. I want others <strong>to</strong> realise that<br />
this virus can infect anyone and that those living<br />
w<strong>it</strong>h <strong>it</strong> are no less human. It is for this reason<br />
that I have gone public, and I am willing <strong>to</strong> be a<br />
living example <strong>to</strong> others. No matter what others<br />
say about me, I need not make <strong>myself</strong> a victim.<br />
I detest the term “AIDS Victim”, which is at times<br />
used <strong>to</strong> describe me.<br />
It was against this background that in 1993 four<br />
women and <strong>myself</strong>, all living w<strong>it</strong>h HIV and AIDS<br />
started a meeting group. We decided the time<br />
was ripe for us <strong>to</strong> do something about our HIV<br />
status and that of the wider commun<strong>it</strong>y. We felt,<br />
especially as infected women, that we had <strong>to</strong> do<br />
something <strong>to</strong> protect our children from what we<br />
were experiencing.<br />
L<strong>it</strong>tle did we realise that we were about <strong>to</strong> start a<br />
chain reaction reaching deep in<strong>to</strong> commun<strong>it</strong>ies<br />
and creating hope for other people living w<strong>it</strong>h the<br />
infection. Consequently, we gained recogn<strong>it</strong>ion<br />
and respect that further boosted us <strong>to</strong> push for<br />
registration of a non-governmental organisation:<br />
Kenya Network Of Women W<strong>it</strong>h Aids (KENWA) in<br />
1998.<br />
By creating this organisation, we knew that at<br />
long last we had a platform <strong>to</strong> air our views, our<br />
pain of being discriminated against, stigmatised<br />
and isolated. It also served as a forum <strong>to</strong> further<br />
seek acceptance and solidar<strong>it</strong>y from our families,<br />
relatives and commun<strong>it</strong>y in coping w<strong>it</strong>h infection
Young women intervene in a world w<strong>it</strong>h AIDS<br />
treatment and referrals <strong>to</strong> health centres, and<br />
food assistance. We also vis<strong>it</strong> affected families,<br />
give home based care for those who are<br />
bedridden and create opportun<strong>it</strong>ies <strong>to</strong> alleviate<br />
poverty. KENWA involves people living w<strong>it</strong>h HIV<br />
and AIDS as resource people in <strong>it</strong>s advocacy,<br />
education and commun<strong>it</strong>y mobilisation, which<br />
includes sharing their experiences of living w<strong>it</strong>h<br />
HIV and AIDS.<br />
and m<strong>it</strong>igating <strong>it</strong>s spread. To achieve this we sold<br />
our ideas <strong>to</strong> the government, donor commun<strong>it</strong>ies<br />
(both local and international) and any other<br />
parties, religious groups and individuals who<br />
would listen.<br />
During this period we operated from a small<br />
office, which the landlord kindly gave us. Besides<br />
this, we were <strong>kept</strong> afloat by nominal funds from<br />
well wishers and deep voluntary comm<strong>it</strong>ment<br />
from our members. As we progressed, luck shone<br />
our way in 2000, when Pathfinder International<br />
and the Catholic Organisation for Relief and<br />
Development Aid (CORDAID) supported our<br />
programmes.<br />
W<strong>it</strong>h their support, we have been able <strong>to</strong> start<br />
drop in centres in three slum areas, in Nairobi,<br />
namely, Mathare, Sowe<strong>to</strong> and Korogocho. We<br />
chose these areas because they are where the<br />
major<strong>it</strong>y of the founding members come from. We<br />
are now receiving calls and demands <strong>to</strong> expand<br />
and in<strong>it</strong>iate similar activ<strong>it</strong>ies in other districts.<br />
Today, KENWA has a membership of over 4000<br />
pos<strong>it</strong>ive women and extends a helping hand<br />
<strong>to</strong> well over 400,000 women and their families.<br />
To better serve the needs of our members, we<br />
mobilised local administration and the commun<strong>it</strong>y.<br />
The President’s office, commun<strong>it</strong>y and religious<br />
inst<strong>it</strong>utions, among others, came <strong>to</strong> our aid<br />
and soon we were receiving relief food from<br />
government, and free treatment for people living<br />
w<strong>it</strong>h AIDS in special programmes, while donors<br />
helped us <strong>to</strong> start a medical facil<strong>it</strong>y in one of our<br />
drop in centres.<br />
W<strong>it</strong>h the support of many volunteers KENWA<br />
provides support and counselling, medical<br />
We tell those we help, if KENWA has helped you<br />
<strong>to</strong> live one more day, you must do the same for<br />
someone else. This works well, as HIV pos<strong>it</strong>ive<br />
women are anxious <strong>to</strong> help others when they<br />
have been empowered <strong>to</strong> live productive, hopeful<br />
lives. People often come <strong>to</strong> me and say, “Asunta,<br />
I no longer need you <strong>to</strong> provide food for me. I am<br />
able <strong>to</strong> take care of <strong>myself</strong> now and I can also<br />
provide food for two orphans”. KENWA’s children<br />
receive material and psychosocial support. We<br />
also encourage mothers <strong>to</strong> prepare their children<br />
in advance before the event of ill health or death<br />
by preparing their will and identifying a future<br />
guardian.<br />
I would like <strong>to</strong> say that some of our greatest<br />
achievements, which are also mine, are that we<br />
have given AIDS a human face and have earned<br />
the respect and acceptance of our families<br />
and the entire commun<strong>it</strong>y. Today we talk about<br />
sens<strong>it</strong>ive issues like sex, condoms and AIDS,<br />
thus ending stereotypes and ignorance.<br />
In 1999, when we called on the government<br />
<strong>to</strong> intervene, AIDS was declared a national<br />
disaster. We have seen every sec<strong>to</strong>r involved<br />
in the fight against AIDS since then. This was<br />
another breakthrough. Presently our network<br />
is involved in eight Const<strong>it</strong>uency AIDS Control<br />
Council Comm<strong>it</strong>tees, while one of our members<br />
represents the interests of people living w<strong>it</strong>h<br />
AIDS at the national level.<br />
Born: 1969<br />
Country: Kenya<br />
Organisation: KENWA<br />
Campaigns for:<br />
advocating acceptance<br />
and compassion;<br />
protection of children<br />
and alleviation of<br />
poverty<br />
81
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Fikile Tengetile Dlamini<br />
I continued <strong>to</strong> tell people about HIV and my experiences<br />
because I wanted them <strong>to</strong> start talking and face the<br />
real<strong>it</strong>y in their own commun<strong>it</strong>y.<br />
My name is Fikile Dlamini. I became involved in<br />
work on HIV and AIDS after I tested HIV pos<strong>it</strong>ive<br />
in 1990. When I was 14 years old, I was in a<br />
relationship. After my first sexual encounter, I say<br />
that I got “the three in one” meaning he broke<br />
my virgin<strong>it</strong>y, gave me HIV and got me pregnant”<br />
Three months later I had herpes zoster and<br />
abscesses and was adm<strong>it</strong>ted <strong>to</strong> hosp<strong>it</strong>al. They<br />
did an HIV test w<strong>it</strong>hout my consent. I had no idea<br />
what the ‘HIV pos<strong>it</strong>ive’ on the card hanging on<br />
my bedside meant, but I noticed the change in<br />
att<strong>it</strong>ude from the nurses. Before my diagnosis I<br />
had been the nurses’ favour<strong>it</strong>e patient but after<br />
the test, w<strong>it</strong>h the exception of two nurses, no<br />
one would come close <strong>to</strong> me. When they had <strong>to</strong><br />
administer my medication they would just push<br />
<strong>it</strong> <strong>to</strong> me. I was unable <strong>to</strong> tell my parents, and<br />
instead, I talked <strong>to</strong> my cousin about what had<br />
happened.<br />
My s<strong>it</strong>uation was difficult as I knew no one else<br />
living w<strong>it</strong>h HIV and was desperate <strong>to</strong> meet<br />
another HIV pos<strong>it</strong>ive person. At that time there<br />
were no pos<strong>it</strong>ive messages anywhere; the only<br />
posters that were available would show a fat lady<br />
captioned ‘before’, followed by a very skinny lady<br />
captioned ‘after’, and then <strong>it</strong> showed a coffin that<br />
meant you get HIV and you simply die!<br />
After I left the hosp<strong>it</strong>al, I went <strong>to</strong> The AIDS<br />
Information & Support Centre (TASC) <strong>to</strong> confirm<br />
my HIV status. Indeed, I was HIV pos<strong>it</strong>ive. I was<br />
troubled, being young and having no one <strong>to</strong> talk<br />
<strong>to</strong>. I didn’t know where or how <strong>to</strong> meet other<br />
people living w<strong>it</strong>h HIV. For years I felt alone and<br />
confused. In 1992, I gave birth <strong>to</strong> my second<br />
child and I was even more troubled than before<br />
thinking of death every moment of my life and<br />
having no way of protecting <strong>myself</strong>. During this<br />
82<br />
time I decided <strong>to</strong> comm<strong>it</strong> <strong>myself</strong> <strong>to</strong> listening <strong>to</strong><br />
the radio shows presented by TASC on HIV<br />
and AIDS. Through my troubled times God was<br />
working out a plan for me – a hopeful life was <strong>to</strong><br />
come.<br />
It so happened that my sister’s daughter was<br />
having the same problems as me. She went<br />
<strong>to</strong> deliver her child at the same hosp<strong>it</strong>al as I<br />
had been adm<strong>it</strong>ted <strong>to</strong>. She was also forced <strong>to</strong><br />
have a HIV test and <strong>it</strong> came back pos<strong>it</strong>ive. She<br />
<strong>to</strong>o couldn’t cope w<strong>it</strong>h her HIV status, and my<br />
family asked me <strong>to</strong> take care of her, although<br />
they did not know what was wrong w<strong>it</strong>h her.<br />
Coincidentally, she lived only a few kilometres<br />
from TASC. I moved in<strong>to</strong> her house and this<br />
gave me a chance <strong>to</strong> vis<strong>it</strong> TASC almost every<br />
day. Both my niece and I didn’t know about each<br />
other’s status, we <strong>kept</strong> <strong>it</strong> confidential.<br />
In the meantime, I became a full time volunteer<br />
w<strong>it</strong>h TASC. I was trained on HIV counselling<br />
but I would become even more desperate each<br />
time I saw someone else struggling w<strong>it</strong>h living<br />
w<strong>it</strong>h HIV. “Is she HIV pos<strong>it</strong>ive?” I would ask the<br />
other counsellors whenever someone left their<br />
office. I was always reminded of confidential<strong>it</strong>y,<br />
but my heart would sink at the thought. I started<br />
watching videos on HIV and AIDS and they<br />
helped me <strong>to</strong> understand the issue better and <strong>to</strong><br />
remain calm. Gradually, I became empowered<br />
by the information I was receiving and I decided I<br />
wanted <strong>to</strong> start a support group for people living<br />
w<strong>it</strong>h HIV and AIDS (PLWHA).<br />
I shared my idea w<strong>it</strong>h one of the counsellors at<br />
TASC and she referred me <strong>to</strong> the TASC Direc<strong>to</strong>r.<br />
Surprisingly, the direc<strong>to</strong>r had the same thought<br />
but no one had been willing <strong>to</strong> tell others that
Young women intervene in a world w<strong>it</strong>h AIDS<br />
they were HIV pos<strong>it</strong>ive. So she <strong>to</strong>ok the idea <strong>to</strong><br />
the counsellors’ support group and asked them<br />
<strong>to</strong> start informing their clients about the support<br />
group. It so happened that my niece was one of<br />
the clients. One day, she came back home w<strong>it</strong>h<br />
the information she had received at the centre<br />
<strong>to</strong> educate me about HIV and AIDS. It was still<br />
<strong>to</strong>o difficult for me <strong>to</strong> tell her my status. Finally,<br />
she asked me <strong>to</strong> accompany her <strong>to</strong> TASC. I was<br />
so confused. I consulted w<strong>it</strong>h my counsellor,<br />
who offered <strong>to</strong> pretend that they didn’t know<br />
me. That day at TASC we both <strong>to</strong>ld each other<br />
of our status and in<strong>it</strong>ialised the support group<br />
concept. This is how our national support group,<br />
Swaziland AIDS Support Organisation (SASO)<br />
started.<br />
The first HIV pos<strong>it</strong>ive person I counselled was a<br />
man who wanted <strong>to</strong> comm<strong>it</strong> suicide because of<br />
the stigma he was facing at his workplace. We<br />
watched the films that helped me and we both<br />
wept, but afterwards I felt relieved since I had<br />
accomplished my goal. The most important thing<br />
was that he knew that, while our s<strong>it</strong>uations were<br />
different, I was another person living w<strong>it</strong>h HIV.<br />
This man is still living pos<strong>it</strong>ively and in control of<br />
his life w<strong>it</strong>hout medication. I last saw him on April<br />
30, 2005 at the wedding ceremony of my niece<br />
w<strong>it</strong>h whom we started the support group.<br />
One day, I accompanied the Direc<strong>to</strong>r of TASC<br />
<strong>to</strong> a meeting of direc<strong>to</strong>rs, programme managers<br />
and donors. My direc<strong>to</strong>r thought I could make a<br />
pledge for our support group, and introduced me<br />
<strong>to</strong> the then Programme Manager of Swaziland<br />
National AIDS Programme (SNAP). The master<br />
of ceremonies was <strong>to</strong>ld about my presence as<br />
a person living w<strong>it</strong>h HIV, and in her remarks<br />
she said: “Ladies and gentlemen, <strong>to</strong>day we are<br />
very grateful, having talked among ourselves<br />
about HIV and AIDS that TASC has brought us<br />
someone who has AIDS.”<br />
Au<strong>to</strong>matically <strong>it</strong> was clear that the person was<br />
me, s<strong>it</strong>ting next <strong>to</strong> the TASC Direc<strong>to</strong>r. The SNAP<br />
Programme Manager whispered <strong>to</strong> my Direc<strong>to</strong>r<br />
saying that since the MC had made a blunder,<br />
I mustn’t say anything <strong>to</strong> rectify the s<strong>it</strong>uation.<br />
The TASC Direc<strong>to</strong>r wrote some notes but <strong>to</strong> no<br />
avail, I had <strong>to</strong> speak. I s<strong>to</strong>od up and repeated the<br />
words of the MC. That was the beginning of my<br />
public life. There were 55 people in that meeting,<br />
including the Minister of Health, Dr. Von Wissel,<br />
now the Direc<strong>to</strong>r of the National Emergency<br />
Response Comm<strong>it</strong>tee HIV and AIDS (NERCHA).<br />
NERCHA is the driving force on HIV and AIDS<br />
in the country. Also among them was a health<br />
educa<strong>to</strong>r from the Ministry of Health who asked<br />
me <strong>to</strong> participate in a radio programme that same<br />
day.<br />
At 12.30pm on February 24, 1994, I became<br />
the first person in Swaziland living w<strong>it</strong>h HIV <strong>to</strong><br />
disclose her status on national radio. I have<br />
never looked back since that moment. The<br />
negative perspective of the media was my first<br />
encounter w<strong>it</strong>h stigma. I thank God for the TASC<br />
direc<strong>to</strong>r who protected me. I continue <strong>to</strong> live<br />
pos<strong>it</strong>ively and openly, driven by the anger I had<br />
<strong>to</strong>wards my boyfriend who didn’t want <strong>to</strong> adm<strong>it</strong><br />
that he had infected me. I ask <strong>myself</strong>, how many<br />
more young women will become infected and<br />
later be rejected as I was?<br />
Pol<strong>it</strong>ical and religious leaders reacted differently.<br />
Some suggested that I should be branded and<br />
placed in quarantine so that people could be<br />
protected. Some would inv<strong>it</strong>e me and then mock<br />
me saying AIDS is a punishment from God; I<br />
should repent my evil ways, God is able <strong>to</strong> heal<br />
me. Thanks <strong>to</strong> the staff of TASC, I was never<br />
alone during these difficult times. I remember<br />
one pas<strong>to</strong>r inv<strong>it</strong>ed me <strong>to</strong> give a testimony and<br />
during the church service he quoted some verses<br />
from the Bible saying <strong>it</strong>’s a curse from God.<br />
He then asked me <strong>to</strong> stand up and said,” here<br />
she is, look at her”, then asked me <strong>to</strong> s<strong>it</strong> down<br />
w<strong>it</strong>hout allowing me <strong>to</strong> give my testimony. I felt so<br />
humiliated, but as an advocate for change I had<br />
<strong>to</strong> remain courageous.<br />
83
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
In the commun<strong>it</strong>y, my mother helped by talking<br />
<strong>to</strong> other mothers, sadly some would say we<br />
shouldn’t come near their families because<br />
I would infect them. The discrimination and<br />
stigmatisation continued like this until I decided<br />
<strong>to</strong> consult w<strong>it</strong>h our chief who called a commun<strong>it</strong>y<br />
meeting <strong>to</strong> address the issue. I continued <strong>to</strong> tell<br />
people about HIV and my experiences because<br />
I wanted them <strong>to</strong> start talking and face the real<strong>it</strong>y<br />
in their own commun<strong>it</strong>y. Today, things are much<br />
better and the very same people who were<br />
mocking me now need me the most. I have since<br />
started the Motjane HIV and AIDS Prevention<br />
In<strong>it</strong>iative (MHAPI), which involves members of<br />
my commun<strong>it</strong>y, in building awareness of HIV and<br />
AIDS.<br />
I am a commun<strong>it</strong>y worker and I do home vis<strong>it</strong>s<br />
for PLWHA. During my vis<strong>it</strong>s I not only provide<br />
emotional, psychological, and spir<strong>it</strong>ual support,<br />
but I also do physical work like collecting<br />
firewood, cleaning the house, bathing and<br />
feeding the clients. I also provide referrals as<br />
needed.<br />
The MHAPI leadership works closely w<strong>it</strong>h my<br />
commun<strong>it</strong>y chief, Chief Sipho Shongwe who at<br />
the time was the country’s Minister of Health.<br />
We did all we can <strong>to</strong> get influential individuals<br />
involved in our campaigns against stigma and<br />
discrimination of PLWHA. I first met the Minister<br />
of Health at a HIV and AIDS workshop organised<br />
by UNICEF. At the time, he was the Regional<br />
Administra<strong>to</strong>r. I used the opportun<strong>it</strong>y <strong>to</strong> talk<br />
about HIV and AIDS in our commun<strong>it</strong>y. He was<br />
impressed and introduced me <strong>to</strong> his inner council.<br />
Since then, three members of his council have<br />
declared their status <strong>to</strong> the commun<strong>it</strong>y. Working<br />
w<strong>it</strong>h the chief has been very interesting and<br />
has given us the opportun<strong>it</strong>y <strong>to</strong> reach different<br />
comm<strong>it</strong>tees. He has also helped mobilise<br />
funds for our project and brought specialists <strong>to</strong><br />
volunteer w<strong>it</strong>h us. Now, other commun<strong>it</strong>ies are<br />
inv<strong>it</strong>ing us <strong>to</strong> help get their leaders involved.<br />
MHAPI was the first in<strong>it</strong>iative involving a chief in<br />
advocating for the commun<strong>it</strong>y, and the impact<br />
has been great.<br />
My public life has led <strong>to</strong> wonderful opportun<strong>it</strong>ies<br />
<strong>to</strong> get involved at all levels. When the<br />
Ministry of Health was putting <strong>to</strong>gether <strong>it</strong>s first<br />
manual for implementation of HIV and AIDS<br />
programmes, I became involved by collecting<br />
data for a number of surveys. The manual,<br />
‘Behavioural Surveillance Survey’ (B.S.S)<br />
provides programme managers w<strong>it</strong>h ways <strong>to</strong><br />
implement HIV and AIDS prevention intervention<br />
programmes that respond <strong>to</strong> trends in risk<br />
84<br />
behaviour. I was also involved in the national<br />
surveillance on HIV and AIDS.<br />
I have also been involved in the development of<br />
national guidelines on HIV and AIDS policy and<br />
participated in national, regional and international<br />
conferences on HIV and AIDS. In developing<br />
the national guidelines and policy, I brought the<br />
voice of the commun<strong>it</strong>y and the experience of<br />
living w<strong>it</strong>h HIV <strong>to</strong> the process. We considered<br />
how the policy could address issues by not<br />
only concentrating on the medical aspects, but<br />
also on the social aspects. We also stressed<br />
the greater involvement of PLWHA at all levels<br />
of interventions. I am happy that the guidelines<br />
and policy address confidential<strong>it</strong>y and disclosure<br />
alongside treatment, care and support.<br />
As people living w<strong>it</strong>h and affected by HIV and<br />
AIDS, we are benef<strong>it</strong>ing from the roll out of antiretroviral<br />
treatment and are seeing stakeholders<br />
advocating and lobbying for comprehensive care<br />
and support. The country is doing <strong>it</strong>s best even<br />
though some components are not in place; lack<br />
of skilled manpower is contributing greatly <strong>to</strong> the<br />
delay in implementing activ<strong>it</strong>ies. As per policy<br />
requirements, nurses are being trained in antiretroviral<br />
treatment, and I am delighted <strong>to</strong> be one<br />
of the trainers.<br />
I strongly advocate for un<strong>it</strong>y among HIV pos<strong>it</strong>ive<br />
people, we must show love and support <strong>to</strong> each<br />
other. <strong>If</strong> I do not do good <strong>to</strong> others <strong>to</strong>day, no one<br />
will come <strong>to</strong> my rescue in my time of need. It is<br />
important that we practice what we preach and<br />
be role models in our society. Our support group<br />
is growing daily; membership has grown <strong>to</strong> 580.<br />
We have 20 groups and I work closely w<strong>it</strong>h group<br />
leaders by vis<strong>it</strong>ing them in their regions. Our<br />
comm<strong>it</strong>ment <strong>to</strong> others is <strong>to</strong> maintain our dign<strong>it</strong>y<br />
and value one another until the last day. The<br />
commun<strong>it</strong>y is motivating all members <strong>to</strong> be in<br />
control of their lives and we encourage PLWHA <strong>to</strong><br />
have ownership of these activ<strong>it</strong>ies.<br />
Born: 1975<br />
Country: Swaziland:<br />
Organisation: TASC,<br />
SASO<br />
Campaigns for:<br />
psychological, and<br />
spir<strong>it</strong>ual support;<br />
national guidelines on<br />
HIV and AIDS
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Trinh Thi Thuy Ngan<br />
I made my first public appearance while pregnant, and<br />
became a leader in mobilising other pregnant women<br />
and helping them <strong>to</strong> access the medical services they<br />
needed.<br />
At the age of 20, I moved <strong>to</strong> Ho Chi Minh C<strong>it</strong>y <strong>to</strong><br />
work and study office and business management<br />
at Van Lang Univers<strong>it</strong>y. I then moved back <strong>to</strong><br />
Hanoi where my family lives, and got married in<br />
2002. In Oc<strong>to</strong>ber 2004, I gave birth <strong>to</strong> a baby boy<br />
and now live <strong>to</strong>gether w<strong>it</strong>h my husband’s family in<br />
Hanoi. I did not know about HIV and AIDS until I<br />
became pregnant in March 2003 and discovered<br />
that I was infected. I was constantly reminded <strong>to</strong><br />
protect my unborn child. I found ways <strong>to</strong> learn<br />
about HIV and AIDS. Through this process, I<br />
have gained experience and have had a chance<br />
<strong>to</strong> work in HIV and AIDS.<br />
The HIV epidemic is expanding all over<br />
the world and everybody is at risk of being<br />
infected. It is my pleasure <strong>to</strong> work on HIV<br />
because I believe that we should think about <strong>it</strong><br />
as a disabil<strong>it</strong>y, and should make life better for<br />
everyone, especially for those living w<strong>it</strong>h HIV<br />
and AIDS<br />
I am one of the first women in Vietnam who<br />
spoke out in public about the need <strong>to</strong> fight stigma<br />
and shame in the commun<strong>it</strong>y. When I participated<br />
in meetings w<strong>it</strong>h leaders of Quang Trung ward,<br />
Red Cross staff and youth representatives from<br />
other wards, I emphasised the need <strong>to</strong> support<br />
HIV pos<strong>it</strong>ive mothers <strong>to</strong> stay alive and take<br />
care of their families. I made my first public<br />
appearance while pregnant, and became a<br />
leader in mobilising other pregnant women and<br />
helping them <strong>to</strong> access the medical services they<br />
needed. I even mobilised other new mothers<br />
and their families <strong>to</strong> join the support group in<br />
the delivery room when I was there for the birth<br />
of my own child. After taking part in the group,<br />
some members still wavered and I encouraged<br />
them by talking w<strong>it</strong>h them and their families on<br />
the phone and vis<strong>it</strong>ing their houses. A month after<br />
the delivery I was back at the Sunflower support<br />
group for young mothers <strong>to</strong> encourage them and<br />
mobilise new members.<br />
Sunflower is a support group for mothers.<br />
However, there are some activ<strong>it</strong>ies in the<br />
programme supporting their children, husbands<br />
and families. We meet once a week <strong>to</strong> share<br />
our experiences and encourage one another.<br />
Apart from working w<strong>it</strong>h the group, I participate<br />
in exchange sessions <strong>to</strong> share experiences w<strong>it</strong>h<br />
other HIV pos<strong>it</strong>ive people in Hanoi and other<br />
provinces. In this group, HIV pos<strong>it</strong>ive women and<br />
their families are provided w<strong>it</strong>h comprehensive<br />
care and support. This includes economic and<br />
social support, free vaccinations for children,<br />
income generating activ<strong>it</strong>ies, and facil<strong>it</strong>ating a<br />
referral system for the treatment of opportunistic<br />
85
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
infections and providing information about Antiretroviral<br />
(ARV) treatment. The medical staff<br />
also supports us w<strong>it</strong>h medical check-ups, ARV<br />
treatment, providing information related <strong>to</strong> HIV<br />
and AIDS treatment and introducing support<br />
services.<br />
This support group also involves sharing<br />
experiences w<strong>it</strong>h other mothers and solving<br />
conflicts between women living w<strong>it</strong>h HIV and<br />
their families. In this way, mothers are able <strong>to</strong><br />
participate in social activ<strong>it</strong>ies and speak out in<br />
the commun<strong>it</strong>y <strong>to</strong> fight stigma and discrimination<br />
among people living w<strong>it</strong>h HIV and AIDS.<br />
I have also been instrumental in mobilising<br />
husbands <strong>to</strong> support their wives, and in<br />
convincing health care workers <strong>to</strong> provide ARV<br />
medication for fathers who were drug users. I<br />
<strong>to</strong>ld them my s<strong>to</strong>ry and how my husband and<br />
I were infected. I also agreed that if only the<br />
wife receives ARV medicine, she will share <strong>it</strong><br />
w<strong>it</strong>h her husband. This is not a good way for<br />
treatment adherence, but <strong>it</strong>’s done because<br />
the wife does not have the heart <strong>to</strong> see her<br />
husband w<strong>it</strong>hout medicine. We should therefore<br />
encourage husbands, by providing medicine and<br />
opportun<strong>it</strong>ies, <strong>to</strong> take part in activ<strong>it</strong>ies relating<br />
<strong>to</strong> HIV and AIDS. Many have joined the support<br />
group and they attend some activ<strong>it</strong>ies such as<br />
speaking w<strong>it</strong>h the commun<strong>it</strong>y, and participating in<br />
the nutr<strong>it</strong>ional training courses.<br />
Together w<strong>it</strong>h my friends from the Sunflower<br />
support group, I distribute clean syringes and<br />
needles, and collect dirty ones as part of our<br />
efforts <strong>to</strong> reduce harm. This year, we received<br />
funding from PEPFAR, which does not allow us<br />
<strong>to</strong> distribute clean needles or talk about condoms<br />
<strong>to</strong> those under 15. Now, we are working w<strong>it</strong>h the<br />
District Health Centre <strong>to</strong> send two members of<br />
Sunflower <strong>to</strong> collect used needles and syringes.<br />
We also distribute condoms and host awareness<br />
raising activ<strong>it</strong>ies <strong>to</strong> reduce the transmission of<br />
HIV in the commun<strong>it</strong>y.<br />
We attended the Innovation day held by AusAid<br />
in Hanoi, and presented our project w<strong>it</strong>h the<br />
theme: “The things I wish <strong>to</strong> tell you” - Fighting<br />
stigma and shame against HIV pos<strong>it</strong>ive mothers<br />
and their children in Dong Da, Hanoi. We also<br />
participated in the «Warm hug day» programme<br />
organised by FHI and the Hanoi health on<br />
November 31, 2004, where members of the<br />
Sunflower group spoke openly on living pos<strong>it</strong>ively<br />
w<strong>it</strong>h HIV and AIDS. I take part in workshops<br />
organized by Care, Policy, FHI and share<br />
information and experience in communicating<br />
on HIV and AIDS. In February 2005, I attended<br />
a workshop at the Press Club, Hanoi, organized<br />
by UNAIDS and Policy and where the host was<br />
the National Women’s Union. This workshop was<br />
<strong>to</strong> introduce a new magazine and documents<br />
about fighting stigma and discrimination w<strong>it</strong>h<br />
PLWHA. Although I did not do a presentation at<br />
this workshop I had an opportun<strong>it</strong>y <strong>to</strong> meet w<strong>it</strong>h<br />
influential people as an HIV infected person. I<br />
also vis<strong>it</strong> members <strong>to</strong> help them prepare their<br />
applications (i.e. business plan, etc) for a loan for<br />
income generating activ<strong>it</strong>ies.<br />
The first time I participated in these activ<strong>it</strong>ies,<br />
I felt hes<strong>it</strong>ant. However, thanks <strong>to</strong> the<br />
encouragement and support from project staff<br />
and friends I overcame my inferior<strong>it</strong>y complex of<br />
the “disease”. What makes me feel exc<strong>it</strong>ed while<br />
86
Young women intervene in a world w<strong>it</strong>h AIDS<br />
doing the job is that I am still the same person<br />
– optimistic and happy. Many people stand by <strong>to</strong><br />
share, encourage and support me when I have<br />
<strong>to</strong> cope w<strong>it</strong>h challenges. This is a small job but <strong>it</strong><br />
brings happiness <strong>to</strong> a lot of people. What makes<br />
me happiest is that I am still a productive person<br />
in society.<br />
For almost two years now, I have been the leader<br />
of the Sunflower group. I manage, plan and<br />
coordinate activ<strong>it</strong>ies of the support group, and<br />
liaise between the support group, project staff,<br />
the government and other organisations.<br />
I have a lot of difficulty working w<strong>it</strong>h commun<strong>it</strong>ies<br />
and households as the major<strong>it</strong>y still stigmatise<br />
HIV pos<strong>it</strong>ive people. Sometimes I go <strong>to</strong> houses<br />
of HIV pos<strong>it</strong>ive people w<strong>it</strong>h influential people <strong>to</strong><br />
talk w<strong>it</strong>h their family, and guide them about how<br />
<strong>to</strong> best support and care for their HIV pos<strong>it</strong>ive<br />
loved ones, and how <strong>to</strong> avoid becoming infected<br />
themselves. I inv<strong>it</strong>ed staff from the Red Cross<br />
and the Women’s Union <strong>to</strong> the house of a group<br />
member who was successful in her income<br />
generating activ<strong>it</strong>ies. The purpose of this vis<strong>it</strong> was<br />
<strong>to</strong> observe and appraise a successful method<br />
of income generating in order <strong>to</strong> introduce and<br />
support other group members in the same<br />
activ<strong>it</strong>y.<br />
I brought the opinion of HIV pos<strong>it</strong>ive people <strong>to</strong> the<br />
draft Amendment of the Ordinance on the Rights<br />
of People Living w<strong>it</strong>h HIV and AIDS and I also<br />
attended international organisations’ meetings<br />
representing the Sunflower group. I have also<br />
had a lot of discussions and coordinated w<strong>it</strong>h<br />
the management of hosp<strong>it</strong>als <strong>to</strong> set up referral<br />
systems between support groups, commun<strong>it</strong>ies,<br />
the hosp<strong>it</strong>al and other support organisations.<br />
I am now working as a core member of the<br />
Sunflower group in the field of counselling and<br />
am coordinating a project, funded by Medical<br />
Comm<strong>it</strong>tee Netherlands Vietnam, known as the<br />
Commun<strong>it</strong>y based comprehensive care for HIV<br />
pos<strong>it</strong>ive mothers and newborns, in the Dong Da<br />
District, Hanoi, Vietnam.<br />
Born: 1972<br />
Country: Vietnam<br />
Organisations: Mother<br />
<strong>to</strong> mother support,<br />
Sunflower<br />
Campaigns for:<br />
assistance <strong>to</strong> and<br />
mobilisation of mothers<br />
87
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Promise Mthembu<br />
Many young people shy away from being tested and<br />
from talking openly about HIV infection; thus we have a<br />
silent, underground epidemic. These young people are in<br />
school, in tertiary inst<strong>it</strong>utions, and in the productive and<br />
reproductive years of their lives.<br />
My name is Promise Mthembu, a 31-year-old<br />
South African women living w<strong>it</strong>h HIV. I learnt<br />
about my HIV status in 1995 when I went for<br />
my tuberculosis (TB) check up. I was 20 years<br />
old at the time. I think I was infected when I was<br />
15 years old as my child, who is now 14, is also<br />
living w<strong>it</strong>h HIV. Doc<strong>to</strong>rs speculate that she was<br />
infected at birth. When I received the result of my<br />
test, I was shocked and angry. I had been part of<br />
an HIV and AIDS project while in school, I knew<br />
about HIV, but I did not think <strong>it</strong> could happen <strong>to</strong><br />
me. I had only one sexual partner and was from<br />
a religious family.<br />
Anger led me <strong>to</strong> start attending HIV and AIDS<br />
meetings. I wanted <strong>to</strong> change the way HIV and<br />
AIDS work was done. The campaigns at the time<br />
were not working; after all, if they were, I would<br />
not have been infected.<br />
Five months after receiving the devastating<br />
news of my HIV status, I began <strong>to</strong> talk openly<br />
about living w<strong>it</strong>h HIV. In an effort <strong>to</strong> challenge the<br />
approach of organisations working in the field,<br />
I decided <strong>to</strong> actively participate in those areas<br />
I found lacking. I began w<strong>it</strong>h the Department<br />
of Health Regional Office offering one on one<br />
counselling and handling wr<strong>it</strong>ten requests on HIV<br />
and AIDS education. Later, I volunteered for the<br />
Prince Mshiyeni Hosp<strong>it</strong>al as a counsellor and<br />
educa<strong>to</strong>r. During my time there, I established a<br />
support group, the first of many I was <strong>to</strong> in<strong>it</strong>iate in<br />
the coming years.<br />
Between September 1996 and April 1997,<br />
I acted as the Durban regional coordina<strong>to</strong>r<br />
for the National Association of People Living<br />
w<strong>it</strong>h HIV and AIDS (NAPWA). W<strong>it</strong>h NAPWA, I<br />
coordinated support groups in the Durban region,<br />
88<br />
giving lectures and presentations. I also carried<br />
out office administration as required. During<br />
my tenure w<strong>it</strong>h NAPWA, The National AIDS<br />
Convention of South Africa KwaZulu Natal offered<br />
me a full-time pos<strong>it</strong>ion as a regional advocacy<br />
task team coordina<strong>to</strong>r. It was in this pos<strong>it</strong>ion, as<br />
I organised advocacy team meetings and gave<br />
presentations <strong>to</strong> provincial parliament, that I<br />
established <strong>myself</strong> as an activist.<br />
In 1998, the South African Youth Commission<br />
offered me a pos<strong>it</strong>ion as a project coordina<strong>to</strong>r for<br />
Pos<strong>it</strong>ive Ambassadors. Although there has been<br />
plenty of HIV and AIDS education in South Africa,<br />
<strong>it</strong> had not managed <strong>to</strong> change the behaviour<br />
of young people. The South African Youth<br />
Commission identified <strong>it</strong>s role in the campaign<br />
against the AIDS epidemic, and decided that<br />
<strong>it</strong> would adopt the Commonwealth Youth<br />
Programme’s concept of Young Pos<strong>it</strong>ive Living<br />
Ambassadors. YPLA is aimed at young people<br />
between the ages of 14 and 35.<br />
It had become evident that many programmes<br />
aimed at young people were not owned or driven<br />
by young people. In response <strong>to</strong> this gap, young<br />
people living w<strong>it</strong>h HIV drove the YPLA project. Its<br />
focus is behavioural change and pos<strong>it</strong>ive living;<br />
working not only w<strong>it</strong>h HIV infected youth, but also<br />
w<strong>it</strong>h untested youth, vulnerable youth, and HIV<br />
negative youth as well.<br />
HIV infections among women younger than<br />
20 years of age have been increasing in the<br />
KwaZulu Natal region. Young people who have<br />
tested HIV pos<strong>it</strong>ive face huge discrimination in<br />
many sec<strong>to</strong>rs of society. Many young people<br />
shy away from being tested and from talking<br />
openly about HIV infection; thus we have a silent,
Young women intervene in a world w<strong>it</strong>h AIDS<br />
underground epidemic. These young people<br />
are in school, in tertiary inst<strong>it</strong>utions, and in the<br />
productive and reproductive years of their lives.<br />
While women are the most affected by HIV and<br />
AIDS, few campaigns are aimed at them. The<br />
‘use condoms’ campaigns, for example, are<br />
largely aimed at men, as female condoms are not<br />
freely available. In poor commun<strong>it</strong>ies <strong>it</strong> is difficult<br />
for a woman <strong>to</strong> convince her partner <strong>to</strong> use a<br />
condom if he does not want <strong>to</strong>. In my campaigns,<br />
I stress the importance of giving women skills <strong>to</strong><br />
negotiate what they want in a sexual relationship.<br />
The YPLA identified human rights issues as a<br />
focus for their campaigns, and we <strong>to</strong>ok these up<br />
w<strong>it</strong>hin the relevant structures.<br />
In my experience, there is an assumption that<br />
all women living w<strong>it</strong>h HIV practice safer sex.<br />
The real<strong>it</strong>y is that as much as we want <strong>to</strong>, we<br />
may not be in a pos<strong>it</strong>ion <strong>to</strong> do so. However, all<br />
women have the right <strong>to</strong> reproduce. This includes<br />
women w<strong>it</strong>h HIV. In May 2000, I joined the HIV<br />
and AIDS Treatment Action Campaign of South<br />
Africa, (TAC) as their national advocacy project<br />
coordina<strong>to</strong>r for the prevention of mother-<strong>to</strong>-child<br />
transmission (MTCT) project. My main duties<br />
were project management, advocacy, facil<strong>it</strong>ating<br />
training workshops, staff management, including<br />
MTCT researchers and volunteers, report wr<strong>it</strong>ing<br />
and fundraising.<br />
I coordinated a TAC demonstration held during<br />
the AIDS conference in Durban. The peaceful<br />
demonstration aimed <strong>to</strong> highlight treatment<br />
access, improved health infrastructure and<br />
prevention of HIV transmission from mother <strong>to</strong><br />
child. The AIDS 2000 conference organisers<br />
were in full support of the demonstration as<br />
these issues are of utmost importance in global<br />
terms. More than 200 organisations representing<br />
millions of people across the world endorsed<br />
the call <strong>to</strong> march. These organisations and<br />
individuals demanded the lowering of all HIV and<br />
AIDS medication prices and the rights of people<br />
w<strong>it</strong>h HIV and AIDS <strong>to</strong> nutr<strong>it</strong>ion, health care,<br />
education and employment. Our un<strong>it</strong>y across<br />
the globe is a breakthrough in the fight against<br />
the excessive power and prof<strong>it</strong>eering of drug<br />
companies. As a single mother living w<strong>it</strong>h HIV, I<br />
emphasised that most of us die only because we<br />
are poor.<br />
Currently, I am the global advocacy officer for<br />
sexual and reproductive rights (SRR) for the<br />
International Commun<strong>it</strong>y of Women Living<br />
w<strong>it</strong>h HIV and AIDS (ICW). My duties include<br />
project management, drawing and implementing<br />
89
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
advocacy plans for SRR, coordinating research<br />
projects and development of information<br />
materials, contracting and managing research<br />
consultants and associates. I represent ICW’s<br />
views and calls on SRR in key strategic and<br />
policy meetings and at other international<br />
events. I highlight the stigma, discrimination,<br />
and hardship that women living w<strong>it</strong>h HIV face in<br />
the context of sexual and reproductive rights at<br />
events that I attend.<br />
As a young woman living w<strong>it</strong>h HIV and AIDS, I<br />
affirm the need for reproductive health services<br />
<strong>to</strong> support young women on issues around<br />
sexual<strong>it</strong>y. Sexual pleasure is a right even for<br />
those who are HIV pos<strong>it</strong>ive. I am disturbed that<br />
when a young woman discloses her pos<strong>it</strong>ive<br />
status, <strong>it</strong> is taken for granted that she has ceased<br />
<strong>to</strong> be sexually active. The s<strong>it</strong>uation is worse<br />
when we wish <strong>to</strong> have babies. When HIV pos<strong>it</strong>ive<br />
woman is found <strong>to</strong> be pregnant, she can expect<br />
<strong>to</strong> be asked, “How did you get pregnant in the<br />
first place?”<br />
The research undertaken by ICW on sexual<br />
and reproductive health for women living w<strong>it</strong>h<br />
AIDS in French speaking African countries has<br />
revealed that HIV pos<strong>it</strong>ive women’s sexual and<br />
reproductive health is not a prior<strong>it</strong>y in national<br />
and international policies in the response <strong>to</strong> HIV<br />
and AIDS in the 12 countries studied.<br />
I act as an advisor on SRR issues <strong>to</strong> ICW<br />
partners; women’s organisations and UN bodies<br />
like UNAIDS, WHO and UNFPA. HIV pos<strong>it</strong>ive<br />
women lack access <strong>to</strong> knowledge about their<br />
status and they face obstacles in preventing<br />
and terminating unwanted pregnancy. Many<br />
lack access <strong>to</strong> prevent mother <strong>to</strong> child (PMTCT)<br />
transmission and they are normally stigmatised<br />
and discriminated against when seeking<br />
reproductive health care. I believe that there<br />
should be no separation between HIV and AIDS<br />
and reproductive health services because people<br />
need the right information <strong>to</strong> decide their future,<br />
given that more than 90 percent of adult HIV<br />
infections, particularly in Africa, occur through<br />
heterosexual transmission.<br />
Although each woman living w<strong>it</strong>h HIV and AIDS<br />
has her own s<strong>to</strong>ry <strong>to</strong> tell, many of our s<strong>to</strong>ries<br />
are similar and reflect the pos<strong>it</strong>ion of women in<br />
society. HIV can take away your health, but <strong>it</strong><br />
cannot take love away. As a woman living w<strong>it</strong>h<br />
HIV, I still have relationships w<strong>it</strong>h friends, family<br />
and colleagues. Sometimes these relationships<br />
are destroyed because of fear and lack of<br />
knowledge about HIV and AIDS, however, things<br />
are not all negative. It is possible <strong>to</strong> live a pos<strong>it</strong>ive<br />
life w<strong>it</strong>h HIV. Stigma and discrimination can be<br />
overcome.<br />
Postscript<br />
Promise Mthembu is the founder of the African<br />
Microbicides Advocacy Group, the Gender AIDS<br />
Forum of South Africa. She is also a steering<br />
comm<strong>it</strong>tee member for the Global Campaign for<br />
Microbicides of the Global Coal<strong>it</strong>ion on Women<br />
and AIDS, and is a member of the South African<br />
Youth Council, Treatment Action Campaign,<br />
Young Women’s Network, the Global Network of<br />
People Living w<strong>it</strong>h HIV and AIDS, the KwaZulu<br />
Natal Cerebral Palsy Association, Society for<br />
International Development, Reproductive Rights<br />
Alliance of South Africa, Catholic Inst<strong>it</strong>ute for<br />
International Relations, AIDS Legal Network,<br />
and an advisory member on HIV and AIDS and<br />
women for the Ethical Globalisation In<strong>it</strong>iative.<br />
90<br />
Born: 1974<br />
Country: South Africa<br />
Organisations: ICW, TAC,<br />
African Microbicides<br />
Advocacy Group (AMAG)<br />
Campaigns for: sexual<br />
and reproductive rights<br />
of HIV pos<strong>it</strong>ive women
Young women intervene in a world w<strong>it</strong>h AIDS<br />
Emma Tuahepa-Kamapoha<br />
I believe that engaging religious and trad<strong>it</strong>ional<br />
leaders on HIV and AIDS issues is imperative in helping<br />
commun<strong>it</strong>ies deal w<strong>it</strong>h stigma and discrimination.<br />
I had just completed high school and went <strong>to</strong><br />
college <strong>to</strong> do a Diploma in Education. After<br />
having an HIV test the result came back<br />
HIV pos<strong>it</strong>ive. I was just 21 years old when I<br />
was raped. My innocence, my future seems<br />
unsecured and in add<strong>it</strong>ion <strong>to</strong> this, I did not<br />
have counselling. I am not sure I unders<strong>to</strong>od<br />
what stigma would mean. I was more ashamed<br />
of <strong>myself</strong> and about what people in my own<br />
commun<strong>it</strong>y would think about me. At first, I felt<br />
like a complete failure and I needed <strong>to</strong> lead<br />
<strong>myself</strong> in the direction of healing. The real<strong>it</strong>y<br />
was I have been living w<strong>it</strong>h HIV and I now had<br />
conformation. I knew there was life after being<br />
diagnosed HIV pos<strong>it</strong>ive. Beside these pos<strong>it</strong>ive<br />
thoughts, I was angry and still felt like killing<br />
<strong>myself</strong>. However, I am the first born of five<br />
children, I did not want them <strong>to</strong> become infected.<br />
I was raped and could not forget that <strong>it</strong> needed a<br />
measure of sacrifice.<br />
I have life shows on radio and TV and I continued<br />
w<strong>it</strong>h my studies. I felt my efforts already were<br />
appreciated. I wanted <strong>to</strong> know more about HIV<br />
and I wanted <strong>to</strong> do much more.<br />
My first regional trip was <strong>to</strong> Botswana where I<br />
had an opportun<strong>it</strong>y <strong>to</strong> meet other women living<br />
w<strong>it</strong>h HIV and AIDS at the SWAA conference.<br />
These women encouraged me, pushing me <strong>to</strong><br />
do more advocacy work. I was supported by<br />
UNAIDS Namibia and travelled w<strong>it</strong>h the UNAIDS<br />
Country programme representative, Mrs. Mary<br />
Guinn Delaney, who later became my men<strong>to</strong>r and<br />
In Namibia, the culture does not allow women <strong>to</strong><br />
speak out but I could no longer be silent. At that<br />
stage, I still believed I was going <strong>to</strong> die soon so<br />
I was comm<strong>it</strong>ted <strong>to</strong> saving at least one person’s<br />
life.<br />
In November 1996 I became the first Namibian<br />
<strong>to</strong> disclose my HIV status <strong>to</strong> the nation on<br />
television. This real<strong>it</strong>y shook the nation because<br />
I still looked very healthy. I got support from<br />
the Founding Father of the Nation Dr. Sam<br />
Nujoma by then the President of Namibia, Dr.<br />
Nicky Iyambo and The Minister of Health Social<br />
service by then Libertine Amathila. Since then,<br />
I have had the opportun<strong>it</strong>y <strong>to</strong> vis<strong>it</strong> all 13 regions<br />
of Namibia, spreading messages of hope and<br />
encouragement <strong>to</strong> young people in univers<strong>it</strong>y,<br />
schools, colleges and vocational training centres.<br />
91
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
supported me in many ways, including providing<br />
access <strong>to</strong> Antiretrovirals, when I needed them,<br />
as these medications where not yet available in<br />
the country. It was at this meeting, that I spoke<br />
for first time <strong>to</strong> an international audience, where<br />
Ms. Bridgett Pickering of On Land production,<br />
(instrumental on the documentary Emma S<strong>to</strong>ry);<br />
approached me <strong>to</strong> run a s<strong>to</strong>ry of my life.<br />
Through this documentary, Namibians across<br />
the country shared my experience as a<br />
young woman living pos<strong>it</strong>ively w<strong>it</strong>h HIV. This<br />
documentary went beyond Namibian and was<br />
translated in Portuguese and other languages. I<br />
was then inv<strong>it</strong>ed <strong>to</strong> neighbouring countries and I<br />
started <strong>to</strong> work w<strong>it</strong>h young people in the region.<br />
I have accomplished much work in Botswana,<br />
as I did work w<strong>it</strong>h Barclays Bank youth caucus<br />
<strong>to</strong>uring throughout Botswana.<br />
In January 1997, I met others and made a<br />
decision <strong>to</strong> un<strong>it</strong>e, supporting each other. In 1998<br />
I met w<strong>it</strong>h David Lush, a wh<strong>it</strong>e Namibian man<br />
living w<strong>it</strong>h HIV and he disclosed is HIV status <strong>to</strong><br />
me. We agreed <strong>to</strong> talk <strong>to</strong> counsellors at the state<br />
hosp<strong>it</strong>al and rally <strong>to</strong>gether those who volunteered<br />
<strong>to</strong> speak, joining w<strong>it</strong>h other PLWHA. A few weeks<br />
later we gathered at his house for a meeting of<br />
affected people. At a follow up meeting, which<br />
was strictly for HIV pos<strong>it</strong>ive people, we shared<br />
our experiences, and realised that we had<br />
particular needs but few resources. It became<br />
apparent that we would need <strong>to</strong> set up a formal<br />
organisation for HIV pos<strong>it</strong>ive people in Namibia.<br />
Supported by AIDS Care Trust (ACT) we put<br />
<strong>to</strong>gether our first event for HIV pos<strong>it</strong>ive people.<br />
About 15 people came and <strong>it</strong> was a fantastic<br />
experience. In<strong>it</strong>ially, we called ourselves Pos<strong>it</strong>ive<br />
Nation. The groups existence was threatened<br />
as the entire group, (except for me) was not<br />
open about their HIV status in public so <strong>it</strong> started<br />
slowing down. As the public started knowing<br />
about the group, because of stigma many<br />
w<strong>it</strong>hdrew from the group, however AIDS care<br />
trust continue <strong>to</strong> support us. We met behind<br />
closed doors and the group started <strong>to</strong> grow<br />
again. The group was renamed Lironga Eparu,<br />
which means, “learn <strong>to</strong> survive” in Rukwangari,<br />
a Namibian language. The inspiration from late<br />
Teresia Masoja who said after an HIV pos<strong>it</strong>ive<br />
result we are learning again how <strong>to</strong> survive.<br />
Lironga Eparu was registered in 1999 as a trust.<br />
In 2000, others and <strong>myself</strong> completed a country<br />
<strong>to</strong>ur where we mobilized and managed <strong>to</strong> recru<strong>it</strong><br />
more HIV pos<strong>it</strong>ive people <strong>to</strong> join us, supported<br />
by VSO-Namibia. By the middle of 2001, we<br />
92<br />
held a strategic planning meeting attended by<br />
representatives of HIV pos<strong>it</strong>ive groups from<br />
around the country. W<strong>it</strong>h the support of AIDS law<br />
un<strong>it</strong>, Ms. Michaela Clay<strong>to</strong>n assisted w<strong>it</strong>h technical<br />
expertise and also co-facil<strong>it</strong>ated the meeting. She<br />
assisted in securing resources for this meeting.<br />
At this meeting we agreed <strong>to</strong> set up a national<br />
association of people living w<strong>it</strong>h HIV. A larger<br />
group endorsed the name Lironga Eparu.<br />
I started at Lironga Eparu as a volunteer<br />
from 1999 <strong>to</strong> 2002. Today I am the national<br />
coordina<strong>to</strong>r and represent HIV pos<strong>it</strong>ive people<br />
on HIV and AIDS governing structures such as<br />
the National AIDS Executive Comm<strong>it</strong>tee (NAEC)<br />
and the Namibia Multi-sec<strong>to</strong>ral HIV and AIDS<br />
Coordinating Comm<strong>it</strong>tee (NAMACOC).<br />
In 1999, the Health Minister, Dr. Libertine<br />
Amathila, planned <strong>to</strong> make AIDS a notifiable<br />
disease. This would, by law, require doc<strong>to</strong>rs <strong>to</strong><br />
disclose a patient’s HIV status <strong>to</strong> their relatives.<br />
David Lush, three others and <strong>myself</strong> (all HIV<br />
pos<strong>it</strong>ive) went <strong>to</strong> see the Minister of health. The<br />
Minister was exc<strong>it</strong>ed <strong>to</strong> meet w<strong>it</strong>h PLWHA and<br />
we had a fru<strong>it</strong>ful meeting. We were asked <strong>to</strong><br />
draft some guidelines on how we felt the ministry<br />
should handle the issue of confidential<strong>it</strong>y and<br />
notification. We were successful and this did not<br />
become a law in Namibia.<br />
A huge project began as various organisations<br />
pooled their supporters <strong>to</strong> wr<strong>it</strong>e a draft policy on<br />
confidential<strong>it</strong>y and notification for the government.<br />
We included the Internet forum af-aids in our<br />
discussions. The AIDS Law Un<strong>it</strong> (ALU) of the<br />
Legal Assistance Centre also became involved<br />
holding workshops and discussion forums across<br />
the country. The policy, drafted by ALU, w<strong>it</strong>h<br />
contributions from HIV pos<strong>it</strong>ive people and other<br />
organisations was adopted by Cabinet in 2002.<br />
Although the current policy has been heralded<br />
for balancing public health prior<strong>it</strong>ies w<strong>it</strong>h the<br />
need <strong>to</strong> protect the rights of PLWHA, <strong>it</strong> appeared<br />
<strong>to</strong> have had lim<strong>it</strong>ed impact. In 2003 Lironga<br />
Eparu conducted a study called The Treatment<br />
Consultation, which revealed that HIV pos<strong>it</strong>ive<br />
people experienced severe discrimination and<br />
breaches of confidential<strong>it</strong>y in government clinics<br />
and hosp<strong>it</strong>als around the country.<br />
I believe that engaging religious and trad<strong>it</strong>ional<br />
leaders on HIV and AIDS issues is imperative<br />
in helping commun<strong>it</strong>ies deal w<strong>it</strong>h stigma and<br />
discrimination. I spearhead many commun<strong>it</strong>y<br />
activ<strong>it</strong>ies bringing <strong>to</strong>gether leaders and HIV<br />
pos<strong>it</strong>ive people <strong>to</strong> confront matters of importance.<br />
In September 2001, a group of more than 100<br />
HIV pos<strong>it</strong>ive people gathered in Kavango <strong>to</strong> make<br />
their HIV status public. We organised this his<strong>to</strong>ric
Young women intervene in a world w<strong>it</strong>h AIDS<br />
event w<strong>it</strong>h the Lironga Eparu leader of the region,<br />
Rosw<strong>it</strong>ha Ndumba, the Basic Education Minister,<br />
John Mu<strong>to</strong>rwa, and the Governor of the Kavango<br />
Region, Sebastian Karupu w<strong>it</strong>h Support of<br />
Catholic AIDS Action. That day we recomm<strong>it</strong>ted<br />
ourselves and vowed <strong>to</strong> end the stigma attached<br />
<strong>to</strong> HIV and AIDS.<br />
At the same event, I appealed <strong>to</strong> the Ministry<br />
of Health and Social Services <strong>to</strong> ensure that<br />
members of Lironga Eparu who made their HIV<br />
status public at the weekend received material<br />
and financial support. A 25-year-old mother<br />
of two, who desperately needed medication<br />
<strong>to</strong> see her children grow, particularly moved<br />
me. At that time the government had started<br />
a pilot project <strong>to</strong> provide ARV medication<br />
<strong>to</strong> HIV pos<strong>it</strong>ive mothers and their babies in<br />
two hosp<strong>it</strong>als in Namibia, but the hosp<strong>it</strong>al<br />
in her area was not one of them. I therefore<br />
appealed <strong>to</strong> the President of Namibia, Dr. Sam<br />
Nujoma, <strong>to</strong> ensure that the provision of antiretroviral<br />
medication <strong>to</strong> HIV pos<strong>it</strong>ive people was<br />
exped<strong>it</strong>ed. I was able <strong>to</strong> speak w<strong>it</strong>h conviction<br />
as the members who had declared their HIV<br />
status that day motivated me.<br />
In July 2003, business people met in Windhoek<br />
<strong>to</strong> discuss the difficult issue of coping w<strong>it</strong>h<br />
the increasing costs of AIDS prevention and<br />
care. At the meeting, I pointed out that people<br />
living w<strong>it</strong>h HIV had not noticed the significant<br />
change in the cost of medication that the<br />
pharmaceutical companies had promised. My<br />
desire, nevertheless, is <strong>to</strong> see ARV medication<br />
distributed free throughout Namibia. I know that<br />
<strong>it</strong> is possible. What we need is a multi sec<strong>to</strong>ral<br />
approach. This requires a well-drafted budget<br />
proposed by individuals, companies, and the<br />
government.<br />
In February 2002, during his first vis<strong>it</strong> <strong>to</strong> Namibia,<br />
I met Stephen Lewis (The Un<strong>it</strong>ed Nations<br />
Secretary General Special Envoy on HIV and<br />
AIDS in Africa). During his vis<strong>it</strong> we shared w<strong>it</strong>h<br />
him our wish for an office where PLWHA could<br />
gather, share, support and give each other hope.<br />
On November 29, 2002, we were so proud <strong>to</strong> be<br />
able <strong>to</strong> inv<strong>it</strong>e him <strong>to</strong> the opening of our offices, in<br />
the presence of the Health Minister Dr. Amathila.<br />
The Red Cross Society of Namibia generously<br />
donated office space rent-free, and the Br<strong>it</strong>ish<br />
Council donated furn<strong>it</strong>ure and equipment. The<br />
office is known as the House of Hope and always<br />
has a candle of hope burning. It is here that<br />
PLWHA come <strong>to</strong> share their experiences and <strong>to</strong><br />
lend each other support when faced w<strong>it</strong>h stigma<br />
and hardship.<br />
I w<strong>it</strong>h Ms. Kanjoo Mbaindjikua have lobbied<br />
participation of leaders in our events w<strong>it</strong>h the<br />
support of Mrs. Joan Guriras. We lobbied the<br />
wife of the former Prime, Mrs. Joan Guriras, and<br />
on <strong>World</strong> AIDS day, Lironga Eparu organised<br />
a walk of hope. The former Prime Minister of<br />
Namibia, Dr. Theo-Ben Gurirab, his wife and<br />
all parliamentarians joined us. At this event<br />
the Prime Minister paid tribute <strong>to</strong> me for the<br />
courageous step I <strong>to</strong>ok in speaking publicly about<br />
my HIV status years ago - an act that helped<br />
demystify the cond<strong>it</strong>ion and helped <strong>to</strong>wards<br />
changing perceptions <strong>to</strong>wards HIV and AIDS in<br />
Namibia. I was elated and emotional <strong>to</strong> see many<br />
HIV pos<strong>it</strong>ive speakers from different corners<br />
of the country tell of fears and difficulties they<br />
encountered on first discovering their HIV status.<br />
We have come a long way, but women are not<br />
appreciated in the fight against HIV, and now I<br />
speak <strong>to</strong> men <strong>to</strong> dialogue and help work against<br />
the disease.<br />
As the first Namibian <strong>to</strong> disclose my HIV status,<br />
I enjoy good relationships and support from<br />
<strong>to</strong>p officials. A few <strong>to</strong> mention are Minister<br />
of Health, Dr. Kamue and his team, Prime<br />
Minister Nahas Angula, Deputy Prime Minister<br />
Dr. Libertine Amathila, the speaker <strong>to</strong> cabinet<br />
Theo-Ben Gurirab and many others. We have<br />
established a good working relationship and are<br />
partners comm<strong>it</strong>ted <strong>to</strong> the well being of PLWHA<br />
in Namibia. The government appreciates our<br />
input and advice, and calls on us <strong>to</strong> help w<strong>it</strong>h<br />
programmes on the prevention of mother-<strong>to</strong>child-transmission<br />
and anti-retroviral therapy.<br />
They involve us at policy formulation and all other<br />
levels.<br />
I have worked w<strong>it</strong>h courageous HIV pos<strong>it</strong>ive<br />
people including the late Simon Elago and<br />
Maureen Katjatako, who died as true advocates<br />
but never enjoyed the fru<strong>it</strong> of their work. They<br />
believed that providing medication alone would<br />
not curb the negative impact of HIV and AIDS.<br />
From experience, they unders<strong>to</strong>od that the<br />
counselling system needed <strong>to</strong> be expanded and<br />
people needed <strong>to</strong> be economically empowered.<br />
These were the issues they strongly advocated<br />
for. Today, Lironga Eparu members are<br />
counsellors at hosp<strong>it</strong>als and s<strong>it</strong> on the ARV<br />
medication comm<strong>it</strong>tee.<br />
Having discovered my HIV status as a young<br />
person, I am also comm<strong>it</strong>ted <strong>to</strong> awareness<br />
campaigns among youth. W<strong>it</strong>h the support and<br />
blessing of the Namibia National Students’<br />
Organisation (NANSO), I established AIDS<br />
awareness clubs in schools around the country.<br />
93
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
I have contributed <strong>to</strong>wards the publication of a<br />
booklet called ‘Let’s talk about HIV and AIDS’,<br />
distributed in Namibian schools.<br />
Currently we are busy w<strong>it</strong>h a treatment l<strong>it</strong>eracy<br />
programme. I have been behind the role out of<br />
Antiretrovirals in Namibia and believe access<br />
<strong>to</strong> all who need <strong>it</strong>, should have <strong>it</strong>. Equ<strong>it</strong>y is the<br />
principal. The potential for and power of involving<br />
PLWHA-including children is recognised but<br />
largely unrealised.<br />
It is unfortunate that HIV and AIDS has the face<br />
of poverty and especially of women and young<br />
girls. In Namibia some Ministers, <strong>to</strong>p officials<br />
and business people who are HIV pos<strong>it</strong>ive can<br />
prolong their lives because they have access <strong>to</strong><br />
good medical schemes. I call on them <strong>to</strong> come<br />
out in the public <strong>to</strong> help fight the disease.<br />
Born: 1974<br />
Country: Namibia<br />
Organisations: Lironga<br />
Eparu, (National<br />
Association of PLWHA)<br />
Campaigns for: universal<br />
and free access <strong>to</strong> ARV,<br />
pos<strong>it</strong>ive living for PLWHA<br />
94
Young women intervene in a world w<strong>it</strong>h AIDS<br />
TOOL BOX<br />
Start an Organisation<br />
This is one of the most powerful ways <strong>to</strong> effect change and improve<br />
cond<strong>it</strong>ions in your commun<strong>it</strong>y. <strong>If</strong> you want <strong>to</strong> start an organisation, chances<br />
are you have already identified an area in which you feel there is a growing<br />
need, but what next?<br />
You can<br />
• Start a club, a youth group or support group as an effective channel <strong>to</strong><br />
empower women in your commun<strong>it</strong>y<br />
• Start an organisation w<strong>it</strong>h friends or peers who have the same passion as<br />
you do<br />
• <strong>If</strong> you cannot find people motivated <strong>to</strong> start an organisation w<strong>it</strong>h you<br />
remember you can start on your own and encourage others in the process.<br />
Founding members<br />
An important first step is <strong>to</strong> identify and bring <strong>to</strong>gether the founding<br />
members of your organisation. Keep <strong>it</strong> in<strong>it</strong>ially small.<br />
Some qual<strong>it</strong>ies <strong>to</strong> look for are people who you:<br />
• Would like <strong>to</strong> work w<strong>it</strong>h<br />
• Can learn from and share experiences<br />
• Know will listen <strong>to</strong> you and also voice their opinions<br />
• Have a common goals and visions w<strong>it</strong>h<br />
• Know will have the relevant technical skills that you will require<br />
• Can trust and make important decisions on an advisory board.<br />
Implement<br />
Now that you are ready <strong>to</strong> start:<br />
• Select a name and register your organisation according <strong>to</strong> the laws of your<br />
country, <strong>to</strong> give you credibil<strong>it</strong>y<br />
• Get informed - gather as much information on your field as you can<br />
• Network - interact w<strong>it</strong>h people who could support or partner w<strong>it</strong>h you<br />
• Decide how often <strong>to</strong> meet<br />
• Select a facil<strong>it</strong>a<strong>to</strong>r for each meeting<br />
• Remind each other about the next meeting and the objectives or tasks set out<br />
• Set out goals and evaluate your progress consistently.<br />
Build membership<br />
Promoting your organisation <strong>to</strong> build the right type of membership is important:<br />
• Advertise; in the local paper, radio station, or other media<br />
• Word of mouth: tell your friends and family and ask them <strong>to</strong> tell their friends<br />
• Hold open meetings <strong>to</strong> introduce people <strong>to</strong> your organisation<br />
• Men<strong>to</strong>r new leadership for succession.<br />
95
<strong>If</strong> I <strong>kept</strong> <strong>it</strong> <strong>to</strong> <strong>myself</strong><br />
Young Women intervening<br />
in the <strong>World</strong> of AIDS<br />
VISION<br />
A world where young women are intervening<br />
on HIV and AIDS at every level: educating<br />
themselves, mobilising peers, preventing further<br />
HIV infections, advocating for justice, equal<strong>it</strong>y<br />
amongst men and women, caring for their<br />
commun<strong>it</strong>ies and pioneering change.<br />
WHO<br />
Young women, HIV pos<strong>it</strong>ive and negative, from<br />
all cultures, backgrounds and beliefs Everybody<br />
is living w<strong>it</strong>h HIV and AIDS. It is all around us and<br />
we cannot afford <strong>to</strong> keep <strong>it</strong> <strong>to</strong> ourselves.<br />
HOW<br />
• Safe spaces<br />
• Men<strong>to</strong>ring and role models<br />
• Peer education and training<br />
• Volunteerism and leadership opportun<strong>it</strong>ies<br />
• Capac<strong>it</strong>y building<br />
• Support and learning networks<br />
• Documenting good practices<br />
• Resource young women’s leadership.<br />
It is only by having a safe space <strong>to</strong> express<br />
oneself, <strong>to</strong> explore issues that are taboo, sens<strong>it</strong>ive<br />
or stigmatized, and transform the personal in<strong>to</strong><br />
the pol<strong>it</strong>ical, that we create the breeding ground<br />
for young women’s leadership. This leadership<br />
can be fostered through men<strong>to</strong>rs and role<br />
models who inspire and motivate young women<br />
<strong>to</strong> believe that we have the power and the abil<strong>it</strong>y<br />
<strong>to</strong> be agents of change. Messages that speak the<br />
language and real<strong>it</strong>y of young people are essential<br />
in motivating new generations <strong>to</strong> take leadership<br />
in a world of AIDS, which means peer education<br />
and training is crucial.<br />
Once informed and inspired, young women<br />
require space <strong>to</strong> grow in<strong>to</strong> leaders through<br />
volunteer and leadership opportun<strong>it</strong>ies in all<br />
sec<strong>to</strong>rs of society. Young women also need and<br />
want the skills <strong>to</strong> be effective leaders of change,<br />
which makes capac<strong>it</strong>y building essential. By<br />
coming <strong>to</strong>gether and sharing knowledge, we<br />
create support and learning networks that<br />
are essential in building effective strategies and<br />
leadership. Documenting effective programmes<br />
and lessons learnt can help <strong>to</strong> inspire other<br />
young women and enable good practices <strong>to</strong> be<br />
replicated on a much larger scale. And most<br />
96<br />
importantly, we must resource young women’s<br />
leadership as a clear and viable solution in the<br />
response <strong>to</strong> HIV and AIDS.<br />
An investment in young women’s leadership is an<br />
investment in the future. In some countries young<br />
women and girls make up almost 80% of new<br />
HIV infections. For this reason young women’s<br />
leadership in designing and implementing strategies<br />
are essential. Young women know best about their<br />
needs and through their existing peer networks have<br />
the capac<strong>it</strong>y <strong>to</strong> change the course of the pandemic.<br />
WHAT<br />
AIDS is calling for leadership, however there is<br />
no one size f<strong>it</strong>s all approach <strong>to</strong> developing this<br />
leadership. To be effective agents of change,<br />
leaders require a firm foundation in the prevention<br />
and transmission of HIV and AIDS; project design<br />
and implementation; fundraising; and organising<br />
and mobilising others. Beyond this, various<br />
skills and knowledge must be developed among<br />
many people <strong>to</strong> provide leadership at different<br />
levels. Some of these include: public speaking,<br />
organisation development, wr<strong>it</strong>ing, media,<br />
facil<strong>it</strong>ating, training, legal rights, gender equal<strong>it</strong>y<br />
and human rights, counselling, negotiating safe<br />
sex, behaviour change, project management,<br />
home based care, organising people, policy<br />
making, pol<strong>it</strong>ical leadership, pos<strong>it</strong>ive living, income<br />
generation and campaigning.<br />
WHERE<br />
Everywhere HIV and AIDS exists there is a place<br />
for leadership<br />
WHY<br />
We cannot afford <strong>to</strong> be silent. The leadership of<br />
young women is v<strong>it</strong>al if we are <strong>to</strong> have any impact.<br />
Through this book, personal experience has been a<br />
primary motiva<strong>to</strong>r for young women’s leadership; in<br />
many cases and particularly for young HIV pos<strong>it</strong>ive<br />
women, the experience of injustice, stigma and<br />
discrimination has enabled leadership <strong>to</strong> emerge<br />
out of suffering and desperation. Networks of<br />
support have also been instrumental in motivating<br />
leadership; and for some, fa<strong>it</strong>h has been a driving<br />
force. Whatever the starting point, young women<br />
have and will continue <strong>to</strong> intervene in the world of<br />
AIDS because they realise that they must not keep<br />
the real<strong>it</strong>y of HIV and AIDS <strong>to</strong> themselves. Young<br />
women have the power <strong>to</strong> change the face of AIDS.
In this book you will meet young women from all over the world,<br />
who have shaken their commun<strong>it</strong>ies as peer counsellors and<br />
educa<strong>to</strong>rs, as care givers and as people living openly w<strong>it</strong>h<br />
HIV and AIDS; giving hope <strong>to</strong> many and promoting a humanistic<br />
response <strong>to</strong> the pandemic.<br />
Global Coal<strong>it</strong>ion on Women and AIDS<br />
20, avenue Appia<br />
CH-1211 Geneva 27, Sw<strong>it</strong>zerland<br />
Tel: +41.22.791.5412 Fax: +41.22.791.4187<br />
Email: womenandaids@unaids.org<br />
http://womenandaids.unaids.org/<br />
<strong>World</strong> <strong>YWCA</strong><br />
16, Ancienne Route<br />
CH-1218 Grand-Saconnex<br />
Geneva, Sw<strong>it</strong>zerland<br />
Tel: +41.22.929.6040 Fax: +41.22.929.6044<br />
Email: worldoffice@worldywca.org<br />
www.worldywca.org