Worst of all worlds.

Being HIV-positive isn’t easy for anyone. But for women from
ethnic minorities it can be especially challenging, as the first
national conference on the subject was told this month. The event,
organised by ethnic minority HIV and Aids charity Naz Project
London, revealed that women from these communities face significant
hurdles when dealing with the disease.

Naz’s director Bryan Teixeira says it is important for ethnic
minority groups to take HIV seriously because the infection rate
among women in London’s African communities is twice that of men.
“There is still a lot of denial that HIV is in their communities
or, if it is, it’s seen as a gay issue,” he says. And some women
come from cultures where they have a low social status so
negotiating for safer sex is particularly complicated, he
adds.

For others, religion plays a strong role and this can hinder women
coming forward. Sharron Keightley, Terrence Higgins Trust
Lighthouse south London regional manager, says: “They can take so
long to be tested for HIV because of the views that come from the
church: that they are to blame and it is in God’s hands.”

Of the 700 clients a year THT Lighthouse King’s Centre in south
London sees, 85 per cent are from ethnic minorities and most of
these are women. Women tell the service they cannot disclose their
status, or even store their medication in their fridge, for fear of
their family back home finding out.

Being black, female and HIV-positive can be “a triple bind”, agrees
Kusum Gopal, senior research fellow at the London School of
Economics’ gender institute. She says: “It depends on their culture
and social background. This conditioning reflects how they react to
HIV. The disease is looked on as a sin and it brings shame to a
family.”

It is not just women from ethnic minorities settled in the UK who
may be reluctant to reveal their HIV status. Asylum seekers fear an
admission of their condition will count against them during the
asylum process. Teixeira says: “They think ‘can I trust that my
medical information will not cross the boundary and become
available to the Home Office?’.”

HIV-positive Kenyan asylum seeker Salima Jivani (see facing page)
has received disappointing responses from some medical
professionals. “When I’ve been to clinics they ask me where I’m
from first rather than anything about my health,” she says. “I am
asking them for help and they are judging me by the colour of my
skin.”

So what sort of support should social care services offer this
client group? They could follow the example of THT Lighthouse,
which has operated an African emotional support group for three
years. Here, African men and women talk individually to someone
else from their culture who is also HIV-positive, so it differs
from traditional counselling methods absent from some African
cultures.

Keightley says social care professionals should undertake specific
training to ensure they are meeting their ethnic minority clients’
needs and be able to signpost them on to appropriate help.

Providing gender- and culture-specific groups for women from ethnic
minorities may also be helpful if service users request them. Until
recently both Naz and women’s HIV charity Positively Women did this
but each has amalgamated these groups so they include both sexes
from other cultures. Teixeira says this was a fascinating,
unforeseen development which had come about because of clients’
demands.

Reducing the stigma of HIV among women from ethnic minorities needs
to start in school, says Gopal. A greater focus should be given,
for boys and girls alike, to the teaching of good sexual health
practices. “Ghettoising women is wrong. They should be seen in
relation to men and boys.”

Another way to reduce stigma is to build women’s confidence and
skills. Positively Women encourages women to take part in local and
national HIV strategies. And 18 months ago Naz convinced an
HIV-positive black woman to address its AGM for the first time.
Teixeira says: “We’re trying to identify these women to talk about
their experiences but it is a slow process.”

Perhaps the most powerful challengers of stigma and discrimination
are the women themselves.

‘hiv is taboo in our culture’    Salima
Jivani is 34 and from Kenya. She first came to the UK three years
ago on holiday. During her week’s stay she developed a fever and
went to the doctor, who tested her for HIV. The result was
positive. From that moment Salima knew she could never tell her
Muslim family or friends: “HIV is taboo in our culture and you only
get it if you are gay or a prostitute.”  She flew home and told her
boyfriend of one year the news. He did not respond well and this
was compounded when his HIV test came back negative: “He threatened
to tell my family and was abusive and violent towards me. He didn’t
understand HIV, he thought it would go away like a cold and
demanded we have sex. I felt dirty and ill and couldn’t bear the
thought of anyone near me.” Her boyfriend regularly turned up at
the airline office where she worked and shouted abuse at her. After
two months she felt she had to leave before her family found out. 
Salima believes she contracted the virus from the husband she
married as a 26-year-old virgin. The marriage ended after a year
because of his violence – he attacked her when she was pregnant and
she lost their baby. Salima believes her ex-husband knew he was
HIV-positive. After they separated he moved to Tanzania and she has
had no contact with him.  In May 2001 Salima returned to the UK and
claimed asylum after seeing a solicitor. When she told him she was
HIV-positive he questioned her morals as a Muslim. She is still
waiting for her asylum claim on human rights grounds to be
assessed. Initially, Salima was afraid people in the street stared
at her because they knew she had HIV. Accessing community support
groups increased her confidence and last summer she co-founded
Naz’s monsoon group to help other people from ethnic minorities. 
Getting support from social services has been a long process for
Salima, especially as she is now six months pregnant. The baby is
the result of a relationship with an HIV-positive man Salima is no
longer with. “Not only am I Muslim but I am single and a woman. It
has been difficult to get anyone to listen to me or to help me.”
She is worried about affording milk for her baby as she does not
work and is not on benefits. “It is not a good enough excuse for
social care professionals to be ‘over-worked’ and not respond.”