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TESTIMONIES
"I Have AIDS - and I am Happy"
Latin
American women and men with HIV/AIDS talk about their state of mind
and their hopes. When they were first diagnosed with the virus,
some as long as 15 years ago, they felt as if the earth opened under
their feet. But they have all moved on with their lives, and today
they smile, they have once again found reason to smile. Following
are the thoughts of these anonymous heroes, many of them now AIDS
activists.
"I
regained hope!"
María Julia Fernández, 48, Cuban, AIDS prevention
activist
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"Fifteen years after my diagnosis, I am sure of two things:
I am not going to die tomorrow, and I have the right to be happy.
My virus progresses slowly and I have a boyfriend. Something
lovely happened to me. He knew about my condition but he didn't
care. And I will never put his life in danger. Now I dedicate
almost all my time to prevention campaigns. I give conferences,
I travel throughout the country telling my story, distributing
condoms. Last October I represented Cuba at the UN Conference
on HIV/AIDS in the Caribbean, held in Trinidad and Tobago. |
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But
things have not always been like this. It was 1986 and the little
information that was available about the disease was catastrophic.
I didn't understand why it was happening to me. As part of the Cuban
health programme at the time, my husband (now deceased) and I were
hospitalised. The most difficult part was leaving my nine-year-old
son, leaving my house, my job, my family. We entered the hospital
and our thoughts were that we would leave in a coffin. But I regain
hope! Now I think that the greatest challenge for Cuba is to make
people aware of the risk. Anything we are doing to prevent AIDS
is still very little."
"An
unimaginable capacity to fight"
Guillermo Murillo, 38, community leader in Alajuela, Costa Rica.
Former president of the first association of HIV-positive Costa
Ricans.
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"I publicly acknowledged that I had AIDS in 1995, when the
symptoms began. And I realised that society is not as prejudiced
as one might think. I received strong support from my family, my
friends, my neighbourhood. Instead of isolation and exclusion from
society, I believe that one's own fear and anxiety often lead to
self-marginalization. The AIDS diagnosis used to be a sure death
sentence in the physical sense, but today that is not as true, thanks
to the new medications.
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for many people AIDS continues to be a death sentence socially.
In Central America, I think public personalities - politicians,
artists and sports figures - need to become more involved in
the fight against AIDS, and that social changes need to be made
to prevent discrimination and the spread of the disease. To
prevent discrimination, society must assume that nobody has
HIV, and to prevent infection, society must assume that everyone
has HIV. In my own case, I am pleased to have discovered that
humans have an unimaginable capacity to fight.". |
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"I
began to smile again"
Hugo Estrada, 48, Mexican, coordinator of the National Front of
People with HIV/AIDS in Mexico.
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"For me, 1996 was a turning point. All of my effort had
been focused until then on the realisation of a 'life project',
based on my professional vocation. But that year I received
the diagnosis of HIV-positive. It was a prognosis of imminent
death. My life project collapsed. I thought, 'I am never going
to smile again.'
Soon
afterwards, however, the answers began to appear, one by one.
After the International Conference on AIDS, in Vancouver,
Canada, I discovered that there were indeed possibilities
of surviving for several years with a good quality of life
because new pharmaceuticals appeared, though due to their
costs they seemed beyond my reach.
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There
arose motivation to do something more. Surprisingly, my house was
full of friends who shared a dream: to have access to the new drugs
and to survive with a good quality of life. They were the first
pieces of my 'new life project'. The following years were a time
of struggle. We took to the streets to protest, we sat down at negotiating
tables and we went to government offices in order to influence the
health policies related to HIV/AIDS. It has been an iridescent road
with radiant triumphs, but also a dark and sad path. Many of us
already have access to the new drugs, but there are still many who
don't. We continue this struggle for them, because I am convinced
that in fighting for them, I am also fighting for myself. And yes,
I began to smile again."
"Something
unstoppable"
Ana Luisa Magalhaes Amaral, 39, widow, six daughters (ages 7 to
20), architectural draughtswoman and coordinator of RNP+ (National
Network of People Living with HIV/AIDS) in the southern Brazilian
state of Santa Catarina, where she lives in the capital, Florianópolis.
She appears in the photo with her daughter Bruna.
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"I was infected eight and a half years ago by my husband
(who died in June 2000), in an accident related to drugs,
but I don't like to talk about it. I couldn't prevent my youngest
daughter Bruna from infection because at that time we weren't
aware of that possibility.
Since
1998 I have been active in the Group of Support and AIDS Prevention
(GAPA, a groundbreaking non-governmental organisation with
22 offices throughout the country). And for the last two years
I have been the Santa Catarina coordinator for RNP+, which
has representation in 27 Brazilian states.
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is still a great deal of prejudice in Brazil. Families hide their
relatives who have AIDS. In my case, I suffer triple discrimination,
for having AIDS, for being a woman and for being black. But I felt
privileged when I went to Durban, South Africa, last September to
participate in the NGO Forum held parallel to the World Conference
against Racism. There I experienced something wonderful: 15 women
went out to the street to demonstrate in favour of the right of
AIDS treatment for all. The police tried to isolate them, but those
brave women soon were accompanied by at least 500 people who supported
their demands. This movement is unstoppable."
Society
Acting in Solidarity
Alejandro Freire, 30, Argentine. President of the Buenos Aires AIDS
Foundation
- " I found out I had HIV/AIDS 11 years ago. In that era
the social discrimination was much worse than it is now and
information on the disease was much more scarce. I didn't even
know anyone else with the virus. So the first thing I felt was
fear and much anguish. I thought I would die soon. Luckily,
I was able to count on the support of my family and friends.
I participated in self-help groups, did meditation exercises
and creative visualisation. I worked hard on communication with
myself as a means towards fortifying my health, because at that
time therapy with antiretrovirals still didn't exist. |
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After
I was hospitalised for the first time, at age 22, I decided to take
on a more active role. I don't like to talk about the 'fight' against
AIDS, because this isn't war, it is the search for answers to a
problem. I decided to make myself more visible in the media and
then I began to be aware of more than discrimination, I saw many
people taking action in solidarity. I know that a person like me
can die of AIDS, but I met people with AIDS who later died in accidents.
I used to have a death sentence, but I am still alive and do not
plan on dying."
"Defeating Anxiety"
Pablo Anamaría, 30, educator and activist for PROSA, a Peruvian
NGO.
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"I am HIV-positive. I have known for seven years. Despite
the psychological support they gave me before the test, receiving
the new was as if the earth had opened under my feet. I lived
alone, I didn't want to tell my friends. I called my ex-partner
to tell him, and I couldn't avoid an accusatory tone because
I knew I had been faithful and that he had infected me. Besides
him, who to tell? Who could I share my solitude and panic
with? I called my mother and, with her at my side, I told
the rest of my family.
The
still loved me, but I felt that they were distancing themselves
physically from me, undoubtedly out of fear. Only my mother
dared overcome her fear to give me a hug. After several years
of seeing that I am still alive, that I am normal, they have
lost their fear. Now I have no qualms about saying I am HIV-positive.
Everyone in the neighbourhood knows. I do political work at
PROSA. I use my experience as an educator to teach awareness
courses to hospital and clinic workers, to help them overcome
the spectre of their fear of AIDS and to learn to treat those
with the disease. I want to help those who come in search
of help to defeat their anxiety."
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Source:
IPS correspondents.
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