Diagnosed with HIV at 15, Raoul
thought his life was over before it had started. But 11 years on he is still
very much here, mobilising HIV positive youth. Amanda Elliot
reports
I first saw Raoul Fransen, at the Bangkok World Aids
Conference; a tall, softly spoken gay Netherlander with piercing brown eyes,
championing HIV positive youth and condemning abstinence-based prevention
programmes.
For a young man of 26, he commanded enormous respect and a quiet authority
on that vast global stage. So when he agreed to address the Changing Tomorrow
conference last month, PN was delighted to have a chance to track him down
and hear his story.
“It was one of the first times I had had sex and I was just 15. I got
a note from the man I’d had sex with saying I should get myself tested.
Doctors told me I should have some fun because I didn’t have much longer
to live. I had no idea what it meant to have HIV/Aids. I lived in a rural,
small town in the south of Holland. Most of the information in the local library
was from the early 1980s and it basically confirmed what the doctor had said.”
Raoul took his doctor’s advice; withdrew all his money, took out a loan,
dropped out of school and went on tour with the rock band U2. “They
gave me an ‘access all areas’ pass. It was amazing. A year went
by and I didn’t get sick, but all the money had gone. It was a case
of ‘what next?’ So I went back to school.”
In search of support, he contacted the local HIV association, but quickly
found most people there were in their 40s. None had any idea about his emotional
or practical needs like getting through school, choosing an education and
career, or getting health insurance. “Very technical stuff for a teenager,”
he says.
“I was the youngest there. They were very nice but I couldn’t
relate to them.” Raoul started doing outreach work in schools, speaking
to other young people about having HIV/Aids, in the Netherlands and abroad,
anywhere but his local region.
Thus began what Raoul calls his “parallel lives”: one as a HIV/Aids
youth activist outreach worker, the other as a hard-working career-focused
student, living a normal teenage life in a loving middle class home.
Only when he turned 24, nine years after his diagnosis, did he finally tell
his parents. He even managed to keep it from them when he started to get sick
with opportunistic infections.
“I didn’t want it to affect their lives. I didn’t want them
to become over-protective and worry about me. And more selfishly I didn’t
want anything to change at home. I had a great home life. It was my haven
and I wanted it to stay that way.”
Raoul believes HIV-related problems faced by young positive people are the
same as for any other generation. But their perspectives and life needs are
“quite different”. He condemns the tendency to label all youth
as “vulnerable”, citing national surveys is South Africa and Romania
where 60 per cent of young people who had tested HIV positive did not consider
themselves vulnerable or having been at risk.
“This makes it practically irrelevant to address people based on our
perception of their vulnerablitites,” he told the Changing Tomorrow
conference.
“I am a white European guy from a middle class family and have never
been considered vulnerable, not by myself or others. My close friend Dominic
is a young, trafficked orphan from Zaire. He is an ex-prisoner, drug-user
and rape victim. Yet I am the one with HIV and he is a pharmacologist.”
Rauol says he has never really suffered from depression. “It is the
one advantage of being infected with HIV when you are young. You build your
life being HIV positive, rather than getting an education, career and family
first and then having to adjust.”
He made it to med school but found a remarkable lack of sympathy from teachers
there when he started getting sick, so he left. ARVs made a difference and
he returned and finally graduated with a masters in public health.
Working as a policy consultant for
specialist institutions, he started to make contact with more HIV positive
young people, organising informal gatherings and providing toolkits and clear
youth-friendly HIV information.
In 1998, Raoul started to look beyond the Netherlands by volunteering in sub-Saharan
Africa, working with children and orphans, helping to set up ARV programmes.
He now volunteers abroad four months a year.
Struck by the invisibility of young people with HIV, in 2002 at the World
Aids Conference in Barcelona, he set up Young Positives, an international
network for young people living with HIV/Aids.
Despite their widely different backgrounds and circumstances, the young activists
were astonished to find that they all faced the same issues, especially around
education and relationships, what Raoul calls their “dreams and desires”.
“Fifty per cent of the 15,000 new infections are among 15 to 24-year-olds,
but where are they? You can’t support what you can’t see. You
can’t bring young people to you unless you offer them something. But
you need young people around to tell you what it is they need.”
Affiliated to GNP+, the network brings together young people with HIV/Aids
to share experiences, improve access to treatments, fight stigma and discrimination
and involve young people in policy and decision-making forums. In Holland,
Raoul and other young HIV activists have also helped to stimulate greater
youth involvement in the Dutch HIV Association.
Now, he says, the two sides of his life are finally coming together: “The
more work I with young positive people in Holland and Africa the more I am
forced to consider the role HIV plays in my own life.
“HIV is not me, but it is a part of me. It is a key part of my drive
and motivation.”
He says he hasn’t yet started to deal with the fact that he is probably
now not living with a terminal illness. “It has been a really hard idea
to turn around. Thinking about pension plans: that’s really difficult.”
