The Caribbean may conjure up images of a
palm-fringed paradise and a laid-back life, but for HIV positive Caribbeans
in the UK, the stigma shown by their community means life is far from relaxed
Words Susan Cole
Image Clare Nicholas
People
are definitely more enclosed about HIV in the Caribbean. Discrimination and
all negative things associated with HIV are much worse there. Being gay and
being HIV positive are both regarded as a disgrace. Adding HIV to being gay
is like moving from the pot into the fire.”
So began John*, 39, from Trinidad, at a UKC focus group designed to learn
more about people living with HIV in the UK from Caribbean communities. John
was not alone. Words like “disgrace” and “shame” peppered
the discussion that evening.
Infections on the up
Few automatically associate HIV with the Caribbean. Yet by the end of 2005
there were more than 300,000 people in the region living with HIV. Last year,
24,000 died from Aids-related illness making it the leading cause of death
in people aged 15 to 44 in the region.
The Caribbean epidemic is mainly heterosexual, and in many places it is concentrated
among sex workers. But it is also spreading in the general population. Worst
affected is Haiti (see box on HIV prevelance, pg 26) where national prevalence
is around 5.6 per cent, the highest rate outside Africa.
Even in the UK, rates of HIV are increasing sharply; a six-fold increase since
1995 according to some studies. The Health Protection Agency has concluded
that prevalence is particularly high among gay men from Caribbean communities.
Meanwhile, gonorrhoea and chlamydia are about ten times higher in black Caribbeans
compared with the white population.
Real lives: across generations
So we know about the numbers, but
what about the people living with HIV from this community? In the last few
years much has been written about the experiences of Africans living with
HIV in the UK. But even the most diligent search for literature on UK Caribbeans
yields almost nothing. Participants in the UKC focus group were either born
in the UK or born in the Caribbean and now live here. Such is the associated
stigma, some participants felt too uncomfortable to talk openly in the group
so were interviewed separately by the Caribbean interviewer. The first discussion
on HIV diagnosis and disclosing to friends and family revealed how deep the
stigma can be. Firstly we asked why they felt HIV infection was increasing
so rapidly in their community.
Mark: fear of repercussions
Some participants had chosen not tell any family members about their diagnosis
and seemed fearful of the potential repercussions. Mark*, 30, from Jamaica,
was diagnosed in 2001.
“When I found out it really broke me down. Now, I try not to think about
it. I didn’t tell any of my family or friends when I found out. I think
they know I’m gay but they don’t really talk about it. Most Jamaicans
are very homophobic. I think people from the Caribbean are very scared of
HIV and don’t want to talk about it. People with HIV are scared that
if they tell someone, that person will tell others.”
Harry: rejected by ‘shamed’ sister
Those who told family members had mixed reactions. Harry*, from St Kitts,
was diagnosed in 1987, but has only recently told family members about his
HIV status.
“My family were fabulous when I told them, apart from one sister who
couldn’t cope with having a brother who was HIV positive. She couldn’t
take the shame. She wasn’t worried about me, just the shame of people
knowing that her brother has HIV. She thought it was a disgusting thing. If
I’d told her first, I wouldn’t have told any of the others. It’s
been a relief to finally tell them. I’ve waited so long because only
now was I finally ready.”
John: sister refused to let him sleep in her house
John told his family members in stages.
“I told one brother first. He was very understanding, although initially
not everyone in my family was supportive. I’ve had a few negative reactions
but now they’re OK. I have one sister who didn’t want me to sleep
in her house and one brother who kept a separate set of cutlery for me. I
think black people tend to be worse in terms of ignorance about HIV.”
Paul and Sarah: openness has paid dividends
Paul*, 30, born in the UK, only found out about his HIV status the week before
the focus group. He, like Sarah*, 36, also born in the UK, were far more open
about their HIV status and have not yet experienced any stigma.
“As soon as I was diagnosed I told two friends,” said Paul. “Their
reaction was that I shouldn’t worry about it, like it was no big deal.”
“Being diagnosed in 2006 is very different to being diagnosed in ‘86
or ‘96,” he continued. “It’s not a death sentence
anymore. My experience in telling people is not to regard it as burdening
them, but to say
I need a bit of support and help.”
Jade: no support from family
Jade*, 39, born in the UK with Jamaican parents, was diagnosed HIV positive
nine years ago.
“When I told my family I know they felt shame and disgrace. Because
they felt this, they didn’t give me the support I needed. In Jamaica,
people think that HIV equals Aids and that it’s a gay man’s disease,
which is just not true. Because of that I don’t have any interest in
going to Jamaica.”
First and second generations
The group went on to discuss whether people born in the Caribbean viewed HIV
differently from those people of Caribbean descent born in the UK. Paul felt
there was.
“I think there’s a generational difference in attitude regarding
HIV and a difference in attitude between people born in the West Indies and
those born here. Look at the black club Bootylicious, where people from the
Caribbean go. I think lots of people who go there are in the closet. They
go into the club acting gay and when they walk out they act straight. I think
it’s the same in how they deny HIV.”
Jade feels people living with HIV from Caribbean communities are simply not
accessing support services because of the fear of stigma.
“I did go to a few support groups after my diagnosis. They were really
supportive but there were very few HIV positive Jamaicans there. I met one
or two people from similar backgrounds but the stigma in the Caribbean community
is so great many fear just turning up to a support group. They just won’t
come forward. Most of them do not use services and are living with HIV in
isolation. I think they isolate themselves.”
Many participants felt homophobia played an important role in shaping attitudes
to HIV in the Caribbean. Harry said: “With HIV, because it’s seen
as a gay thing, there’s a lot of shame, particularly in Jamaica. If
someone finds out they are positive, they’re afraid that everyone will
assume they are gay, so it’s best to keep it to yourself.”
John felt religion fuelled this. “There’s a lot of religion in
the West Indies, Roman Catholics etc, which makes homophobia worse.”
HIV in the Caribbean
Estimated HIV/Aids prevalence*
• Bahamas: 5,600
• Barbados: 2,500
• Cuba: 3,300
• Dominican Republic: 88,000
• Haiti: 280,000
• Jamaica: 22,000
• Trinidad and Tobago: 29,000
Total: 430,000
Condoms and ‘jungle fever’
We asked the group why they felt HIV was on the increase in Caribbean communities
in the UK. All participants felt that the attitude to using condoms was an
important contributing factor. Paul said: “It’s very simple: they
don’t use condoms. I think because Caribbeans are very private about
sex and don’t like to physically pick up condoms. Black people don’t
like to go for sexual check-ups and men refuse to have HIV tests.”
Mark agreed. “Some people think that when they put on a condom it makes
their penis go dead. They just don’t like them and say it’s too
uncomfortable or doesn’t feel
natural. Some people know they are positive but just don’t care if they
don’t use condoms and infect others. They don’t realise they can
catch other things apart from HIV from
having unprotected sex.”
Frank*, 41, from St Lucia, suggested HIV was spreading among gay men in the
Caribbean community because some white gay men went out of their way to have
sex with black men. “I think there’s a lot of
jungle fever in the UK, white men who are really keen to have sex with black
men.”
Making ignorant assumptions
Harry also spoke about the increase in HIV among heterosexual Caribbeans.
“Straight guys don’t like the feel of
condoms and women wonder what a guy’s been up to if he wants to use
one. Women often don’t have a say in the matter; if a guy doesn’t
want to use a condom there is nothing she can do. I think it’s ignorance.
If you want to use a condom people assume something must be wrong. Giving
out leaflets about this doesn’t make any difference. We need an effective
way of getting the message across.”
Frank feels many attitudes to HIV held by West Indians are shared by people
from other communities. “I think wherever you go you find these attitudes,
not just in the Caribbean. I do think ignorance about HIV has moved on in
the whole world. I’ve made up my mind that HIV is just an illness like
any other and I’m going to enjoy life.”
• Black MSM/Loving Brothers: peer support for Black African and Caribbean
men
who have sex with men living with or affected by HIV. Second and fourth Friday
of the month in Brixton, 5-8pm. Email anthony.maxom@thepositiveplace.org.uk
or call 0208 694 9988 (ext 32)/07949 586 863
• Positive Place African-Caribbean group: peer support for African-Caribbean
people living with HIV. Meets in Brixton Wednesday evening, 5-8pm, and Thursday
morning, 9.30am-12pm (with crèche). Email valarie.vassell@thepositiveplace.org.uk
or call 0208 694 9988 (ext 20)/07951 727 864
