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Tackling AIDS with attitude

23 November 2010

As World AIDS Day approaches, Masi Makhalemele-Cowper, a South African champion of women with HIV, talks to Pat Ashworth

MASI MAKHALEMELE-COWPER has just turned 40. She never expected to live this long, and certainly not to reach it whole. But should a time come when she does fall sick, she does not want people to be praying around her bed while she lies there feeling that she could have done something more to bring about change.

“Some of us are messengers for the right reason, and we must make the best use of that time,” she says. Her every waking moment is devoted to empowering women living with HIV in South Africa to stay well and live to see their children grow up. Her son is 22, but her daughter died at 18 months, and the husband who transmitted the virus is also dead from AIDS.


She was born in Soweto, Johannesburg, where the family had few luxuries, but her father made a living playing the saxophone. Her mother instilled in her the principle that everyone was equal. Her marriage was happy until a test in pregnancy revealed that she was HIV-positive. Those were the days when “everybody was talking death, death, death, all the evil things about AIDS. Now I have to tell my husband, and I think, ‘Oh my God, I’m not going to do it.’”


The thought of breaking the news to her parents was almost worse: “There has never been anyone at home sick and dying. I’m the first one to have brought death into the house. And come on,” she says passionately, “I’m the last child, the baby of the family.”


She recalls that, at the time, everyone thought that if you had AIDS, you had to either be homo­sexual or promiscuous. “I have never been to San Francisco, never been a sex worker,” she comments wryly. “You think you are safe, a married woman; you trust your husband: he has been your best friend. But when temptation happens, people forget they have wives and husbands at home.”


Without drama, she rolls up her sleeve to show the scars that remain from her husband’s violent attack when she told him. He threw her and the baby out for bringing the disease home. She says softly: “There was nothing in my partner’s head that said, ‘Forget everything: there’s a child involved.’ We have lost understanding of motherhood and fatherhood. AIDS is playing with our minds.” He came into her workplace, shout­ing, and so she lost her job as well.


In 1993, there was still little knowledge about how the virus was transmitted from mother to child. Nevertheless, a unit had opened at the local hospital, where a doctor and gynaecologist were working — more or less in secret — with HIV-positive mothers-to-be. “I strongly believe they protected us,” Mrs Makhalemele-Cowper says with gratitude.


She went back to the unit after her husband’s rejection, refusing to be put into an institution. A Canadian doctor, looking for a domestic worker, took her in. “I never aspired to be cleaning somebody else’s house, but I did the job because it was filled with love,” she says. “I was drinking from the same cups. I was eating in the house. They said, ‘Do whatever you can: we’ll support you.’”


THIS must be one of the feistiest and most articulate women on the planet. Her determination to fight ignorance and stigma took her to address the UN in New York, where officials looked askance at this diminutive figure in an orange boiler suit. She helped found the Treatment Action Campaign in South Africa, an ad­vocate for increased access to care and support for people living with HIV — including a national pro­gramme for the prevention of mother-to-child transmission of the virus.


She also set up a drop-in centre in Soweto, and established the Mercy AIDS Foundation (MAF). This offers personal and business development and skills alongside “wellness” and treatment for women and youth with HIV. For, her tireless activism, she has received several awards, notably the Nelson Mandela Award for Health and Human Rights.


BUT now, on her “golden birthday”, she is increasingly convinced that it is on the ground, not in the echelons of power, that change will come. “I’ve stopped doing consultancy work. It’s not where some of us belong,” she says bluntly.


“It’s time for us, as activists, to realise that our activist careers can also unleash change. You don’t have to chase pharmaceutical companies and governments and policy-makers. It takes so long. I’m tired of it. I don’t want to spend the rest of my life trying to get people to implement things they’ve put in charters.”


Women in rural communities do not have the support, courage, or motivation to keep themselves going in order to bring up their children, she says. MAF is based on a simple premise: keep the mother alive.


“The whole world zooms their mind and resources into saving the children that don’t have parents. More and more, I’m putting my foot down. [Mothers] need medicine, access to preventative methods, smear services. If mothers can have such [services] around them, we can have a healthier society. The number of deaths of women in South Africa has increased; so you can’t pretend it isn’t happening. We know why we have orphans — because their mothers are dying.”


Nothing gives her more satisfac­tion than the holistic wellness centre she has set up within MAF, staffed by a network of “angels”, qualified in medicine, social work, and psycho­logy. “It cleanses every pain I have ever been through, that people who are living with HIV have been able to produce something that takes care of our intellectual, emo­tion­al, spiritual, and physical wellbeing.”


The “angels” give quality time to ten women a day, because “people need attention. [They don’t need us to] pop pills in their mouths and send them home to the same problems.”


She believes that there must be a change of behaviour in South Africa — a country with the highest rate of multiple partners, where thinking has become westernised, and where the legacy of apartheid has distorted attitudes towards working on the land. “We need to acknowledge we have the resources at home to live healthily,” she says. “We need to start encouraging our African brothers and sisters to know that we are in a most beautiful part of the world, which has everything a human being needs to survive.”


Increasingly, she believes that the people carrying the disease can be the solution as well as the problem, responsible for creating an environ­ment where their children will grow, be looked after, and not suffer dis­crimination; encouraging them into the caring professions; and identi­fying schools through which services can be channelled. But the churches, above all, can make it happen, she insists, just as they acted over apartheid.


“It’s time we, as people with HIV, started building relationships with the churches. They are places people go for three hours every Sunday, and, if you want to find community in South Africa, the best place to find it is in a church. We’re saying to them: we’re here; we’re the ones who have the disease; we want to help you while we are alive to use your structures to bring healing to families.”


She has not broken down in the course of an hour-and-a-half’s conversation. But now the tears well up and won’t stop, as she says: “Truly, there is no church that is behind me like the Anglican community. I feel I am a child of the Anglicans, and I don’t think I will ever stop glorifying. I have been so blessed.”


All we can do is clasp each other’s hands in a wordless exchange across the table.


WE ARE meeting in the dining room of Anthony and Kathryn Ellis, in Kidlington, Oxford, where Mrs Mak­hale­mele-Cowper is staying. Can­on Anthony Ellis is the Team Rector of Kidlington with Hampton Poyle.


Oxford diocese has a link with the diocese of Kimberley & Kuruman, in north-west South Africa; and Kid­lington has a partnership with the 400-square-mile parish of All Saints’, Montshiwa, near Mafeking, in that diocese. This is home to the Moit­sheki Health and Life Skills Centre, established by the link, thanks in large part to Mrs Ellis’s efforts.


The parish’s link with All Saints’, Montshiwa, has more than almost any­thing else convinced Mrs Mak­halemele-Cowper of the right­ness of her chosen course. The climate of disclosure and hope at All Saints’ leads her to say: “It’s where we’re changing the face of AIDS in the north-west, because young people are involved in this [Moitsheki] pro­gramme — powerful young people with amazing intellectual ability to change their situations. They have found the Church gives them a reason to see the next morning.


“It’s pushing and pulling them. I’m not doing anything amazing here. I love life, and I want them to love life, because, if they do, they will defend it because it is precious.”


Football is instrumental in drawing young people into the programme. It helps them to keep fit and combat stress levels in homes where mothers are absent or sick.


“If our young people are well,” she says, “they can build their skills and intellectual ability and live their lives and look after each other.”


She exults: “Look at me today! I have learned through love. I have learned through people. I have been healed by people. I have been touched by people from all religious cultures praying for me. I have had people scrubbing me with stones, and people shaking me and saying, ‘I am taking the devil out of you,’ and I have accepted it all. Nothing should be taboo, because we don’t know who has what to give.”


She has no money, and receives no salary. She is wary of funding from institutions, because she would have to do what the funders wanted her to. On her visit to England, she hoped for a symbolic 40 new friends to help sustain the work for the next three years. I hope that she finds many more.



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