Young, gifted and positive, Johnny Guaylupo
tells Martin Flynn of his journey with HIV from the streets
of New York to the Houses of Parliament
A
remarkable event took place late last year in one of the elegant committee
rooms in the House of Commons. The Student Stop Aids Campaign was in town,
all fired up to lobby MPs on the urgent need for universal access to cheap
HIV drugs. These students wanted answers from the politicians.
Among them was an eloquent young New Yorker who captivated the parliamentarians
with his story and a tirade against big pharmaceutical companies for blocking
access to generic HIV drugs in poor countries.
Johnny Guaylupo is a 25 year old Latino with a maturity beyond his years.
He told Positive Nation about his childhood in the South Bronx, a rough area
of New York City famous as the birth place of hip hop. His father was from
Ecuador and mum from Puerto Rico but it was his grandmother who did most to
raise him.
Altar boy knows he’s gay
“I knew I was gay from very young. People would notice I was different
and I would get taunted by the guys around the neighbourhood. At school I
was popular but quiet and hung around with the girls.
“I’m Catholic and was an altar boy from the age of six. I was
short and pretty and everyone loved me at the church tripping over my overlong
cassock. Everything in my life involved the church because it was the only
way I was able to socialise.
“I had an early experience with Aids when an uncle, a drug user, got
ill and died but I didn’t understand what HIV was all about. It was
devastating for the whole family.
“My parents were separated and I rarely saw my dad. My mum was a drug
user and she’d be clean for a while and then relapse.
“I was only 15 when I told one of the Catholic Brothers at school I
was gay. He told me I was too young to choose - like it was a choice.
“Nobody explained about HIV and Aids. All we were told was ‘don’t
do drugs.’ We couldn’t even bring up the issue of
condoms in a conversation with the teachers.”
The older man
“I started hanging out in the Village, the gay area of New York, where
I met this older guy. He was nice looking with a beautiful body. He used to
be a football player and had been in the army. I was young and fresh and I
guess had a low self-esteem. We started dating and having sex.
“He used condoms at first but after a while he stopped. I didn’t
know I was supposed to use condoms for this, that and the other.
“It was a crazy time for me. My mum’s boyfriend was murdered and
I started to get into trouble. Some of my gay friends ran away from home and
became sex workers. I was just involved with this older guy and coming home
late and getting screamed at.”
Diagnosis at 17
“Around that time I began to feel ill. I had stomach cramps so bad I
went to the Emergency Room. I didn’t want to go to my family doctor
because I was doing so much I wasn’t supposed to do.
“At the ER I told them I was gay and I agreed to some blood tests. I
didn’t really know what sort of tests.
“At my follow up they sat me in room with a social worker, a nurse and
a doctor. It was a grey, empty and scary room. They told me the HIV test had
come back positive.
“I didn’t know what being positive or negative meant. I was pretty
confused and in shock. But I did know it wasn’t good news. And I didn’t
know how I got it.
“I told the Brother at school I was positive and he hooked me up with
some great support at the Adolescent Aids Programme in the Bronx. But I started
getting really depressed. My HIV diagnosis brought out a lot of deep stuff
about my childhood, my parents on drugs as well as all the Catholic guilt
stuff.
“I was hospitalised because I tried to commit suicide. I swallowed a
whole bottle of tylenol [paracetamol]. I got to the ER and they pumped my
stomach and I ended up in the psyche ward.”
Padded cells
“One morning my mum came into my room when I was sleeping and she looked
in my closet and I heard her crying. I asked her what was wrong and she said
“I know, I know”. I just told her not to worry. I loved my mum
but I was really upset with her over the drugs and not being there for me
when I was little. I think she felt guilty but I told her it wasn’t
her fault and there was nothing she could do about it.
“I ended up hospitalised in the psyche ward and was watched 24 hours
a day by the nurses. It was pretty scary. I was locked up with a bunch of
zombies.
“They took me to a padded room and gave me a TB test and pumped me full
of drugs to make me drowsy. It was a bit like the movie One Flew Over The
Cuckoo’s Nest.
“When I was in the psyche ward I got a call from the guy I was seeing.
He was crying and saying he was HIV positive. I started crying as well, saying
‘We’ll be together for ever’ but I wondered how come I’ve
just found out about my status and all of a sudden he’s telling me he’s
HIV positive.
“I started to see the truth when I found papers about his previous boyfriend
who had died from an Aids-related illness. Then I got real angry, we argued
and broke up.”
Bird-dogging
“I realised I had to educate myself about HIV. I wanted to get involved,
meet other HIV positive people and do something useful.
“I went to the Ryan White Youth Conference, the largest youth HIV programme
in the US. I met other young HIV positive people from around the country.
I was nervous but felt safe because everyone was open about their status.
“I was inspired by the other young people there. I learned about peer
education and safer sex and did volunteer work in the Bronx where the HIV
rates among young people are real high.
“We’d do outreach and try and get people tested and give out information
about HIV services and screening for STIs.
“The following year I went to the same conference and I was
more open and confident. Housing Works (the biggest community based HIV organisation
in New York) had just launched ‘The Campaign to End Aids’. So
I applied and was chosen and went to Washington DC to do intensive training
on grass roots community organising.
“They taught me lobbying and ‘bird-dogging’, where you jump
up and ask questions about HIV when famous politicians are speaking at meetings
on the campaign trail.
“We would come out of nowhere and ask the politicians questions about
the US immigration ban on positive people, or about the millions dying of
Aids or about the lack of support for HIV positive people at home and abroad.
It is a great tactic and gets loads of media coverage.”
Activism
and arrest
“It took a lot for me to make a speech in public. I was the only HIV
positive speaker surrounded by all these middle class girls, so I just said:
‘Hi. My name’s Johnny, I’m from the Bronx and I’m
HIV positive.’
“I went to my first demo in Washington DC about cancelling debt for
poor countries. I would go to ACT UP meetings in New York and then became
a trainer of community organisers from around the US.
“I was arrested at the UN in May 2006 at a civil disobedience demonstration
about treatment access.
“We took a whole list of demands to the head of the US UN mission; more
money for prevention, HIV drugs and peer educators and an end to HIV drug
waiting lists in parts of the US.
“I was one of about 20 activists who chained ourselves together in the
UN lobby shouting slogans. It was on TV everywhere.
“It was five years since the last UN general assembly on Aids and meantime
15 million people had died of Aids.”
Despite being arrested and charged with unlawful entry and disrupting government,
Johnny is confident the charges will be dropped as the protest was non-violent.
“Last year we walked from New York City all the way to Washington DC
to launch the Campaign to End Aids. It took us 18 days to walk 15 miles a
day through New Jersey, Pennsylvania, Delaware, Maryland and finally DC. We
were joined by hundreds more students in each town.
“I got arrested at the bookstore of an organisation in DC that gets
millions of dollars of government money for abstinence programmes. They say
condoms don’t work and link them to increases in HIV. The police arrested
us but the charges were dismissed.”
Sexual impulses
“When I started working at Housing Works I came out about my status
and got a lot of support. Not only is the chief executive openly HIV positive
but many of the staff members are as well.
“I feel comfortable now saying I’m HIV positive. I think back
to what the Civil Rights Movement did in the 1960s when segregation was happening
and it was non-violent civil disobedience which forced the change.
“You’ve got to remember that there’s an HIV crisis going
on not just in Africa but even in my own country. You can’t control
people’s sexual impulses. You can’t control hormones. So why not
just teach us what we should do to be safe if we decide to have sex? All those
abstinence programmes the US is funding just do not work. They’re against
nature.
“Half the new HIV infections are among people between the ages of 16
and 25. So it’s a young peoples’ disease and also disproportionally
affects women, African Americans, Latinos and the poor.
“It’s crazy the government putting billions into abstinence. That’s
what they were teaching me at school. If young people do not have the right
information, no wonder the HIV rates are going up.
“Now I work as an intake and case manager at Housing Works. We’re
running a day health care programme for HIV positive people. We also have
a full medical staff of psychologists and psychiatrists. I get the word out
and make sure we have more clients and enrol them.”
UK tour
“We spoke at 17 different British universities in October; two a day.
I got a fantastic reception. The students welcomed us into their homes and
gave me incredible feedback when I told them my story.
“The first thing to do with young people is to educate them about HIV
and Aids so they know what it is and how to protect themselves. The next thing
is to help them to become organised so they can lobby effectively.
Obviously, what’s going on in the Bronx is not the same as what’s
going on in South Carolina, south Manchester or south London so we teach young
people how to organise in schools and colleges. They can then go back and
teach other kids about prevention in their own communities.
“The important message is: ‘Aids isn’t over until it’s
over for everyone.’ And I’ll keep going until Aids becomes history.”
The future
After a difficult childhood, things are looking up for Johnny; he is studying
public health at college and helping others through his job.
“I’m happy working at Housing Works and hope to grow in the organisation.
And I eventually want to find someone and settle down, maybe adopt a child.
That’s my dream.
“My treatments are going well now. I’m on Truvada (FTC and Tenofovir),
Reyataz (atazanavir) and Norvir (ritonavir) with an undetectable viral load
and a CD4 count of 900 odd.
“I’m starting to work out at the gym again to get rid of my belly.
And I’m feeling pretty optimistic about the future.”
• www.stopaidssocieties.org.uk
• www.housingworks.org
• www.endaidsnow.org
