From the streets of Soweto to a coastal town
in Norfolk, Masi Cowper takes no prisoners when it comes to defending the
rights of positive people. She spoke to Amanda Elliot
Masi
Cowper has a formidable pedigree. She was the first African women to publicly
declare her HIV status, she co-founded the Treatment Action Campaign and has
received numerous plaudits for her work with HIV positive women. In 2004 she
won the prestigious Nelson Mandela Health and Human Rights award for her outstanding
contribution to the fight against HIV. Why, then, has this dynamic and fearless
activist chosen to make her home in a sleepy Norfolk coastal town, far from
the politically-charged energy of the townships?
Stigma, stigma everywhere
Bacton, with its thatched cottages, coastal walks and retired naval officers,
is about as far as you can get from the world’s Aids epicentre.
“I came for love. I married an Englishman and joined him in the UK in
2004,” Masi (pronounced Massey) explains with characteristic exuberance.
After more than a decade battling for people living with HIV, Masi could have
reasonably expected a well-deserved break, settling by the sea with her beloved
but “completely apolitical” husband.
But Masi is not one to rest on her laurels. Last month she returned to her
natural calling, joining the UKC’s board of trustees and being elected
deputy chair of the African HIV Policy Network. From these two significant
vantage points she hopes to bring her brand of HIV activism to the UK. Both
organisations are lucky to have her.
She is also championing an HIV positive man from a nearby Norfolk town who
has been threatened and intimidated since his HIV status made headlines in
the local paper. “I have seen incredible discrimination and stigma in
South Africa, but I was shocked to find myself having to fight the same sort
of battles here in the UK,” she says.
Sex, swearing and states of emergency
Masi exudes confidence and lust for life. Like many African women of a similar
age (36) she is strong, proud of her kids and Christian. But in other ways
she breaks the mould. She is entirely comfortable working with gay men; talks
frankly about how much she enjoys sex and swears with enthusiasm. It is clear
she is at ease with herself.
But it wasn’t always so. Born Mercy Masias Makhalemele in Soweto in
1970, she grew up against a backdrop of apartheid cruelty and growing political
unrest.
“I am a real township girl. I remember the fights, the stone throwing
and the tear gas. I was at secondary school during the state of emergency
and remember how people reacted when the Yellow Mellow police wagon appeared.
The mothers used to scream while that wagon rounded up people.”
All that jazz
A member of the Basotho tribe, Masi was raised in a traditional Catholic family.
“My mother was a baker and church-goer. My father was a jazz musician.”
Ratau Mike Makhalemele was a celebrated South African saxophonist with a huge
following. But back then, times were tough.
“Soweto during those times was a hard place to live. Mum and dad earned
£10 a month which had to feed a family of four kids. We ate a lot of
tinned fish - now I can’t face the stuff.” Although Masi excelled
at school, at 19 she fell pregnant. Her son was born in 1989 and her childhood
ended.
“I felt lucky because the father of the child married me. That was unusual.
Although I had to grow up quickly I was happy living my life and home-making.
I continued my education and got a job as a manageress with AB Spitz, a large
Afrikaans shoe retailer.”
Smashed heart
It was her second pregnancy that was to propel Masi on a journey that would
require her to dig deep into her reserves of strength and fortitude. During
a routine antenatal check-up she found out she was HIV positive.
“My jaw dropped. My first thought was for my baby; was it dead? I had
no idea about Aids apart from seeing pictures of people who looked like skeletons.
There was no post-test counselling. My heart was smashed.
“I cried and cried and when people asked me what was wrong on the combi
[bus] home I said my mum had died. I couldn’t think of anything else
to say.”
At that time the extent of the Aids epidemic was only beginning to be understood.
The first antenatal survey took place in 1990 and, by 1993, recorded infections
had increased by 60 per cent and prevalence among pregnant women was 4.3 per
cent.
“No one in our family had been sick or had an STD. I had to go home
and be with the man who I had always trusted. I couldn’t understand
it. I fixed my face and then thought: ‘I don’t want sex’
so I told him we would have to use a condom. My excuse was the doctor had
told me the baby didn’t like sperm. But I couldn’t enjoy it anymore.”
No
choices for Nkosi
Her daughter, Nkosi Khnoa, meaning ‘God is there,’ was born in
1993 HIV positive.
“Two doctors were really supportive but there was no nevirapine, no
alternative to breast milk, no choices.
“After she was born I was left with my legs up on the bed for seven
hours. And this knocks my heart; I heard the nurses gossiping, saying I must
have slept around to be HIV positive.
“When the family visited I wanted to tell everyone but they were so
excited, saying she was so pretty. So I went along with it.
“I lived with this secret for six months and then one day I thought
‘fuck it - I’ve had enough of this lie.’
“When I told my husband he physically jumped away from me and demanded:
‘Who did you sleep with?’ Then he hit me, so many times I needed
stitches, and threw me and the kids out of the house.”
Desperate, Masi sought refuge with a neighbour. The next day she went to work
but her husband came to her office and announced he couldn’t live with
a person who had Aids. Her boss promptly sacked her.
“In two days I lost my husband, my home, my job and was beaten up by
the man I had given my heart to.”
From manager to maid
She quickly found a job as a live-in maid with a mine-owning Canadian family.
“The wife was a paediatrician. I told her right out I had HIV and she
said it was not an issue. Then she asked: ‘How are you?’ It was
the first time anyone had asked me that question. At that moment my life changed.
“I went from being a manageress to a cleaner, but I took the job to
provide for my kids.
“I was not prepared to cry forever. When my boss showed me an interview
with a gay white man talking about living with HIV and about his organisation,
Living and Hope. I decided to go find him.
“I didn’t know what to expect or why I was there. I came from
a homophobic culture. And there I was in a room with six gay men. But before
my prejudices could surface, they lifted up my baby and carried her around
the room. That was the start of my activism.”
This unlikely group went on to organise the first underground conference of
people living with HIV where Masi became the first African woman to publicly
declare her HIV status. The conference attracted 600 people, mainly white
men. From there the National Association of People Living with HIV was launched
and Masi spoke about her HIV status on TV, for all to see.
Awful dilemma
In 1996 Masi heard her husband was sick. Should she go the bedside of the
man who had beaten and rejected her? Compassion prevailed.
“He had meningitis and, being better informed, I knew what that meant.
The kids needed to see their father, so we went. He didn’t recognise
me and died eight days later.”
Masi told everyone at his funeral that he had had Aids and that she was HIV
positive too.
“They all said, ‘We saw you on TV’ and in an African context,
they thought I had killed him. They were shocked when I said he had left me
and our baby daughter with a death sentence but no-one believed.”
The saddest loss
A year later her beloved daughter Nkosi died, aged just two years and six
months. Had her mother had the medical care now available to HIV positive
pregnant women, her daughter would now be 13. Nkosi’s death broke her
heart but also fired her activism.
“I wanted to create an environment where anyone rejected could be cared
for, and most of all I wanted to fight against ignorance.”
What followed was a highly intense period of activism, fighting against HIV
stigma and for access to treatment.
From an early time she knew how to use the media. As special advisor to Beat-It,
the first ever TV soap to tackle HIV, she drew on her own experiences and
her husband’s death. And she reached thousands through her column in
Bona Magazine.
Through contact with HIV positive Judge Edwin Cameron and other lawyers she
developed a charter of rights on HIV that became a bench mark for prevention
and advocacy worldwide.
Standing up in Soweto
In 1998 Masi returned to Meadowlands, in Soweto, to educate young people about
HIV through writing and performance. By now her family was aware and supportive
of her situation, especially her father.
“As an artist his attitude was very much: ‘Let her live her life’.
“I was completely open about my status. Someone said they may not let
me in church but I made a stand. This was my neighbourhood. What were they
going to do? Chase me out of town?”
Unsung heroes
“It is hardly ever mentioned but it was women who set up the Treatment
Action Campaign (TAC). Ninety per cent of its members are women. They are
part of an unwritten history, like in the fight against apartheid. They are
South Africa’s unsung heroes.”
For six months she worked as a community officer for the Department of Health
in KwaZulu-Natal where HIV rates were soaring. And in 2000 she worked with
TAC’s Zackie Achmet to promote a massive campaign to test and treat
pregnant women, a subject close to her heart. During these years, Masi and
her colleagues challenged and embarrassed ministers at various conferences
and took them to court over their failure to provide AZT. She even covered
herself in red paint during a protest at the 2002 Barcelona World Aids conference.
A time to recharge
After 10 years of unrelenting activism, Masi knew she had to slow down. Her
health had held up but she knew she was lucky. So she took a sabbatical, and
soon after met and, with her son’s blessing, married her husband.
Masi concedes Norfolk is not exactly known for welcoming outsiders - especially
those who are black or gay and HIV positive; but she is certainly not scared
of the challenge. Through her work with East Anglia Aids Triangle she has
met others living with HIV and set up peer support group.
“At the moment it is me and six gay men in a room - exactly how it was
back in the beginning in South Africa,” laughs Masi.
And through her work with the African HIV Policy Network she intends to put
positive sex back on the agenda for Africans.
“We have a right to a fulfilling and satisfying sex life. There are
good things about our traditional culture but there are also things that hold
us back. We should take the good things and use them to fight Aids. That includes
encouraging teenagers who are planning to have sex to try other enjoyable
non-penetrative forms of sex.”
For Masi, the problem of stigma and disclosure is the same for HIV positive
people the world over. And the lessons learned in the streets of Soweto can
translate to leafy Norfolk or high-rise London.
“You can’t be in a box when you don’t want to be in a box.
The real question for people living with HIV is how do you come out of that
box?”
• www.ahpn.org
• www.ukcoalition.org
• www.aids-east.org.uk
