Salima Jivani is a rarity: an openly positive
Muslim woman. She talks to Amanda Elliot about domestic violence,
single parenting and her Muslim sisters
Photo Mark Weeks
There
was a time, not so long ago, when Salima Jivani jetted around the world from
her home in Kenya. She liked to take advantage of free flights, one of the
few perks of her job as ground staff for an airline.
It was on one of these breaks in 2001, while visiting a close friend in the
UK, that Salima fell inexplicably ill. After failing to recover and work out
what was making her sick, her friend suggested an HIV test. No big deal, thought
Salima. In her 13 years with the airline she had undergone four routine HIV
tests as part of her medical insurance assessments. All had come back negative,
so why would this be any different?
Shocking results
“It was 5pm when I got my results. I was due to fly back to Kenya at
6am the next morning so I had just 12 hours to get it into my head that I
was HIV positive. The clinic offered me counselling but all I could say was
‘I’m okay. I have to go home now’. I was in shock; numb.”
Kenya has some 1.3 million people living with HIV. Salima was aware of HIV.
But, being Asian and one of the country’s 4,500 Shi’a Ismailis
(a branch of Islam headed by the Agah Khan), she was sure it only affected
other people.
On the flight back to Kenya, Salima’s thoughts turned to her current
boyfriend. Was he the source of the infection?
“I was seeing this Pakistani guy at the time and my first thought was:
he has a right to know because maybe he is infected. At first he was very
understanding. But then he tested negative.
“Over the next three months he changed. HIV had put me off sex. I just
couldn’t face it. So he started to threaten me; if I didn’t have
sex with him he would tell my mum or come into my workplace and tell the other
staff. At one point he gave me a black eye. He had a hold over me and used
it to get me to do what he wanted.”
By now it had dawned on Salima that it was probably her ex-husband who had
infected her, lending credence to the oft-quoted saying that the biggest HIV
risk factor for Asian women is getting married.
“I had been married to this Hindu guy. But it only lasted a year. He
turned out to be a violent alcoholic who beat me. So the marriage ended quickly.”
Finding herself in yet another abusive relationship made Salima want leave.
There was no job to stay for; once the airline found out about the HIV her
insurance would be invalidated. So she fled to the UK. It was then she realised
that she hadn’t properly dealt with her HIV status.
Monsoon reigns
“Almost immediately I went to NAZ project London [an HIV and sexual
health charity for black and ethnic minorities] but even there I was still
not dealing with it. I didn’t want to talk about it and I didn’t
want to cry about it.”
Instead, Salima threw herself into volunteering, on the THT helpline, at Lighthouse
West London and, of course, at NAZ.
“That is the way I deal with things, by putting my own fears aside and
helping others. At NAZ she met Parminder Sekhorn, head of client services,
and with her help launched Monsoon, a group for Asians living with HIV.
“What was so special about this group was that it had an Asian focus.
As far as I was aware it was the only place that HIV positive Asian women
could meet. It made me feel comfortable.
Salima read plenty about HIV at this time. Monsoon only had a handful of members
including a couple of Muslim men. It grew gradually, providing vital peer
support to Asians and especially women with HIV. But like many groups, members
have since drifted away, pulled by family commitments. It has proved difficult
to restart the group because the community is so hard to reach.
Asian men and women with HIV are very much a hidden part of the UK epidemic.
Officially HIV infection and prevalence are low in the UK Asian population.
But public health experts strongly suspect heavy stigma and extremely low
levels of testing in this community mask a far more serious problem. Increased
travel to and from India where some 5.7 million are living with the virus
and transcontinental arranged marriages may be fuelling the spread of HIV
among UK Asians.
Insult to injury
Salima fell pregnant when she was 34. The father was an HIV positive English
man she had met on a dating internet site.
“It was one of the attractions. At first it made me feel comfortable.
I thought wow, I have finally met someone who understands. He has been living
with HIV for a long time; he is a haemophiliac and contracted HIV through
a blood transfusion. I was his first HIV positive girlfriend and he made me
feel very happy and special for a couple of months.”
“I wanted to get engaged; do things properly, you know. But he became
abusive, calling me a ‘Kenyan whore’. He also told me his family
had said I should ‘go back to my own country’. It was clear he
wasn’t interested.
“I should have seen the warning signs. It shocked me how little he knew
about HIV; I would say he knew less about the virus than someone living in
a third world country. He said his doctor had told him an undetectable viral
load meant he was HIV negative so couldn’t pass it on. I could never
imagine any HIV doctor saying that.”
He told Salima to abort the baby, but she was very firmly against the idea.
The doctors at St Mary’s Hospital told her there was every chance, given
the right treatment and care, her baby would be HIV negative. And, given her
very irregular periods, she may not get another chance to have a child.
“The doctors helped me to feel confident about keeping the baby. I had
every confidence in them. I wasn’t scared about transmitting the virus
to my child, only about raising a child all on my own without support.”
Racism
and asylum
Five months into her pregnancy Salima applied for discretionary leave to remain
at notorious Lunar House, an immigration registration centre, in Croydon.
The experience she says was “dehumanising” and “humiliating”
and had a profound impact on her.
“I arrived at 5am and queued for three to four hours only to find I
was in the wrong queue. No one bothered to explain where people had to go.
Staff were so rude. Even the security guards talked about people queuing up
as if they were nothing. It was awful. If people come to their country seeking
help they should show them compassion and respect.”
Supported by the NAZ project, Salima was finally awarded her discretionary
leave to remain.
Salima began combination therapy, starting on Combivir and nelfinavir, but
extreme morning sickness meant she struggled to keep down the tablets.
“They had to keep increasing my dose to ensure I was absorbing enough.”
Thankfully her baby daughter was born HIV negative and is now a healthy beautiful
bouncing toddler. She stopped therapy after the labour but went back on the
pills after suffering painful peripheral neuropathy in her hands and feet.
Relations with the child’s father are still rocky.
“He disappears for several months and then turns up demanding to see
his daughter. His family are not interested in her. Over time he has subjected
me to more and more verbal abuse and has even grabbed me around the neck.
I put up with things because I so want my daughter to have her daddy in her
life. But sometimes I don’t think it is worth it.”
Her child is clearly the apple of her eye. But like many HIV positive mums
she suffers from isolation and struggles with every-day problems.
“It’s not the HIV that is hard but dealing with the daily issues:
being a single parent, domestic violence, childcare, temporary housing (the
council has moved her four times and she is still in temporary housing) and
getting support from social services.”
Brighter future
When I interviewed Salima she had just undergone major surgery. She was clearly
in pain and struggling to stop her lively two-year-old from bouncing on her.
“Now they have mainstreamed HIV in social services, they say no to everything
in Lambeth. They have just turned me down for a bath seat and some respite
care for my little girl. On one visit a social worker asked me why I had had
a child if I was too ill to care for her. Of course I wrote a letter of complaint
but have still heard nothing.”
Despite these frustrations, Salima is now determined to make the most of her
future and is looking forward to finding a job once her daughter starts school.
She would also like to help NAZ restart the Monsoon group. She speaks four
languages.
She has much to be happy about: a beautiful, healthy child, a CD4 count of
820, an undetectable viral load and a calm and level-headed approach to living
with HIV. She has no qualms about disclosing to her friends or indeed here
in PN. But she cannot tell her mother.
“Back in Kenya and among muslims there is so much stigma and silence
about HIV. It would kill my mother if I told her. She would be worried about
what other people think. I have never met anyone from my community who is
HIV positive.”
“But here it is okay. My [English] boyfriend always asked me why I wanted
to tell everyone. But I don’t like secrets.
• www.naz.org.uk
