Shame, Stigma & Sexuality

Sarah’s story Redux – sadly. 28/01/2020

I spent Mothers Day 2011 in Hammanskraal – a poor informal settlement about an hour’s drive from Pretoria, South Africa’s capital city. My friend Anna & I were visiting a family we love dearly; my second family. We took bags of fried chicken, mealies, fizzy pop and lots of plastic toys. It was a strangely beautiful day: big beautiful empty skies, and the magical light shining on rich red soil.

Rich red soil covered my friend Sarah.

We stood around her fresh grave with her three daughters: Nonkhozi, Nozizwe and Nozi, and 10 other children and young people: three grandchildren, plus nieces, nephews. And as the say wore on random relatives I’d not met before, like Sarah’s brother, arrived. All astonished, long faced, in shock. Not understanding why a woman just 43 years old had suddenly been taken from them.

Sarah should not have died.

The cause of Sarah’s death was AIDS and TB. But you won’t find that on her death certificate – because the other cause of Sarah’s death was stigma.

Sarah died because she told no-one that she had HIV. Well she told me – mainly because I told her. Sarah had lived with me for 3 years. An amazing woman, she looked after my house, my children, my life. And as many of us do – who have the rare privilege of living in Africa and being cared for so well – I welcomed Sarah into my family. My sons loved to play football with her grandsons. And whenever we went back to South Africa we spent time together. Six months after we left, I invited her on holiday, to the other side of that big beautiful country.

The minute I saw her in February 2010, I knew. That year we spent my birthday back & forth to my GP, hiding our visits from my sons, and finally getting the wretched news that she was sick, very sick. She needed treatment immediately – but she couldn’t get it from the Cape Town GP who diagnosed her. She needed to go back to the local hospital in Pretoria, the facility closest to where she lived and worked. There, she had to be in line at 5.30 am, queuing for hours, going through the mandatory three education sessions to make sure she took her HIV drugs properly. Not easy when you are the sole breadwinner – and you work six days a week, 12-hour days from 7am. Not easy when you fear that if your employer finds out, you’ll be out of a job. Not easy when you tell no one.

She told no one. And it was another six months before she started treatment. I nagged her by phone and text, but it wasn’t until I came back, gave her an excuse to skip work and drove her to the hospital, two days running at 5.30 am, that she finally got the precious drugs to start re-building her immune system – drugs she had needed urgently six months earlier.

The effect wasn’t immediate, but when I saw her two months later she was proud, showing off that she was “nice and fat”. She said the drugs worked fine. And still she told no one. Gently, I asked her to talk to her sister. I asked her to take her six year old to get tested. She promised she would. She didn’t. She told no one.

I don’t know what happened at the end. It was very sudden. A few weeks before Mothers Day we spoke and she seemed well. She was only in hospital two days. Her sister visited her. She asked Sarah if she had TB or AIDS – Sarah got angry and threw her sister out of the hospital room. The next day she was dead. “Her lungs gave out” the nurses told her sister.

I told her sister the real reason. A tough decision, but I’m convinced that we must break the cycle of stigma and silence. I begged her sister to get little Nozi. She hasn’t. I say I’ll take her when I’m next there.

I’m still immensely sad, and intensely angry.

There is so much that I wish had been different.

One thing I really wish is that when Sarah had her youngest daughter, she had met one of the Mentor Mothers from mothers2mothers – an amazing African charity that started in 2001 in South Africa. I was doing a little bit of work with them when Sarah died. In 2011, they were employing over 1400 women in clinics in 7 countries – the numbers have since grown, but the model’s the same. The Mentor Mothers are all HIV-positive recent mothers who support pregnant women, and help them to get tested for HIV. Then they walk alongside the women who have HIV to make sure they get on treatment – for their own health and to block HIV from being passed on to their babies. It’s a simple model and it’s brilliant.

At this most vulnerable and difficult time, a woman who has just found out that she has HIV sees that living well is possible. She learns the specifics of what she must do to take care of herself and protect her baby and her family – just as important she gets the most direct experience that fights stigma head on. She does not need to be ashamed of having HIV, she does not need to fear that her life is over, because here are all these women living life with passion. Women just like her. Nearly all the Mentor Mothers come from poor backgrounds, with limited education. Rarely employed before they come to mothers2mothers, they are trained and paid, and treated with dignity and respect. And they flourish.

But Sarah didn’t meet a Mentor Mother. No one walked alongside her when she had Nozi. Who knows if this beautiful orphaned girl also has HIV?

The day after I carried Nozi home from her mother’s grave, I flew into Geneva. Another organization that I admire was hosting a meeting called Mobilizing communities to create a supportive environment to help eliminate vertical transmission. 30 people were in the UNADS Kofi Annan room: researchers, NGO workers, UN reps; all good people talking about a vital topic. I found it depressing. I had a photo of our sad gathering open on my laptop to keep me focused. It’s hard to stay focused in UN meetings – we talk about systems, declarations, procedures, aid architecture, funding flows, bottlenecks.  We rarely talk about people like Sarah, except in the most abstract terms. This group has done great work, but still the money doesn’t really flow – not enough and not to all the places it is needed.

Sitting in that room, having worked for nearly 30 years to end AIDS, I reflected on how much good talk I had heard, the barnstorming speeches, fine words I had read and written, great people I had met: scientists, researchers, diplomats, nurses, doctors, Ministers of Health, activists, heads of UN agencies. 30 years since HIV was discovered, they use the right language, agree (on most things), know what needs to be done. But it just doesn’t happen – not enough of it, and not in enough of the right places.

And the irony is that Sarah, working for me, could hardly have been in a better place to access HIV treatment – even when her country was not routinely getting drugs to poor women like her. I had battled hard through the UK government system, the G8, the UN and was now busy getting money to brave politicians, brilliant doctors and loud, determined activists who were taking the South African system to task and demanding that the HIV treatments that were already saving lives all over the continent were rolled out fast to their own citizens.

Staring at her grave in Hammanskraal, putting up my “flag” to speak in that room in Geneva, my mind was buzzing: why did I not push harder? Earlier? Soon after I arrived in Pretoria to work for DFID we’d been in the side kitchen – the one designated for the “help”, outside the main house in a chilly corridor to the garage. She was washing the dishes, I was (full of guilt) trying to dry them. Could I help her get hold of a lawyer? she asked. Nozizwe’s father had just died. Yes, it was AIDS. She needed papers so Nonkhozi would have a bit more money for Nozizwe’s school supplies.

Why didn’t I press her then to tell me more? Suggest a trip to the doctor when she said she’d been checked during her last pregnancy and all was fine?

And then the next year later, when my friend Zackie came to stay and she was coughing so bad. He had patiently asked her, over and over “Sis Sarah, have you tested for TB?” And she stood there, cheerfully holding the HIV Positive T-shirt that he’d just given her (his trademark that he’d also given to Nelson Mandela who had proudly worn it joining forces with Zackie, the most visible of South Africa’s AIDS activists, together condemning the next President for his AIDS denialism). But that day in 2008, Sarah just stood there, smiling her lovely warm smile, saying nothing. He tried again, insistent, in Sesotho this time; she kept on smiling. It was that same smile that greeted me every morning with a cup of tea, and at night when I came home from work, and she was fussing around the house, or laughing with my sons as they chased around after their dogs.

So much sadness, so many ironies, surrounding Sarah’s too early death.

The year she died, wise policy makers declared that the AIDS epidemic had reached a tipping point: the cost of treatment had dropped dramatically; research was pouring in confirming that using treatments at scale keeps people alive and stops them transmitting the virus. This epidemic could be over within my children’s lifetime, they said.

But only if we keep on putting in the money, and putting it where it really matters, in the programmes that focus on why and how people make good decisions about their health: on the psycho-social aspects of AIDS. It sounds like jargon, but it just means thinking first about why people make decisions, how they make changes, and making it easy for them to choose what is right for them, and that will help them stay safe, healthy and happy. In her own way, Sarah was doing what seemed right for her – she was protecting her children, by protecting her income and her job, when she was too frightened to tell her next employer that she needed the time off work to line up for those HIV treatment adherence lessons.

I’ve spent long nights wondering why Sarah died, why she could not tell anyone she had AIDS. She should have had the best chance. The best doctors in the country wanted to help her – there is nothing we could not have got for her. But of course it was not rational. It was shame.

Even in a country where 1 in 4 women of her age have HIV – and as many as 1 in 2 in the poor community she came from – she could not stand up to her sister, her friends, her employer and say she had the virus.

And this is why I write. And this is why I rage.

And of course the story doesn’t stop neatly there. I bet you want the happy ending?

In 2011, at the graveside, the rich white British lady agrees to look after the children. From that day on they call her Mommy. They send her happy little What’s App messages often – especially when she’s a day or two late with the monthly top up that keeps the fridge stocked with their favourite sticky pop and chicken feet. She gets a local friend, Hilary, to keep an eye on them and she organises her work travel to come to see them every few months.

She urges Nozizwe, the middle daughter, to go to university. And Nozizwe does.

Even with shaky marks – and it’s hard to get top scores in your “Matric” when your mum has just died – a couple of years later, Nozizwe gets a place to study nursing in Pretoria. When she was little Nozizwe talked about being a doctor and Sarah always said Nozizwe was the smart one. I always said that Sarah was the smart one – and that if she’d not been born into poverty, she might have studied medicine. I promised Sarah then that I would pay for her daughters’ education. So I topped up the orphan grant so she could live in an apartment near the university, rather than with her auntie. Nursing is a great way out of poverty for a black girl from the settlements – many pay a fortune to go to shonky fake nursing schools.

And then, in late 2014, I got the call: “Mommy, I’ve got something to tell you…” Does she want an abortion? No, she’s excited. She’ll have to drop out of university for a term, but Nonkhozi will look after the baby – just like Nonkhozi looked after her & Nozi when Sarah worked for me. “Nonkhozi’s a good mum”, she tells me. And she tells me that she’s named her son Future.

It’s hard to track what happens over the next year or so. Her grades start to drop as her belly swells. After missing a couple of terms, the university don’t want her back; it’s many months before she tells me. The baby father disappears, there’s a funky new man from her part time store job, then she gets fired for some trumped up crime. The monthly money goes into an acting course, she tells me she has roles as an extra. My friend Hilary tells me to keep an eye on her social media. She’s worried about what Nozizwe is up to.

In my nice Geneva meeting rooms we have conversations about “Destigmatising sex work”, and decide we should not talk about the sex industry. We know the real vulnerabilities are about girls exchanging sex for goods, for clothes, for school fees, for housing.

Nozizwe is still the lucky one. When I come to Johannesburg for work, she stays in my hotel room. 2 years ago, we sat up late at night, drinking good cabernets and talking – as I hope other mothers do – about HIV and abortion and the rest. She is fluent, well informed, helps her friends who are in need, tells me she has tested and that she will talk to her sisters. I shouldn’t worry. And Nonkhozi is still looking after Future. That’s how it works

On the next trip, I stay an extra weekend, rent a car and we drive out to Hammanskraal to see them all. It always takes a full day – stopping on the way out to pick up enough Nandos chicken. Once the dishes are cleared, the three girls and Nonkhozi’s children squeeze into the car. We drive the 30 minutes back to the mall to stock up with a month’s supplies of food, UHT milk and soap. Nonkhozi sits in the front on this trip. She has some special requests: her phone has broken, and can I also take her to the chemist? And help her to find a dentist? She’s been in pain for months. But her top priority is to get school things for Nozi – she needs books, a backpack, some new clothes and her first bra.

Eating the fried chicken earlier there’d been lots of giggling about the youngest daughter’s budding body – and stern warnings from Nonkhozi that she must not let that boy from school walk her home. The sweet little girl, who used to cling on to a duster as she followed her mother around my big DFID house, now has the surly, pouty moments of an early teen. My fears about HIV however seem alleviated. “Failure to thrive” is one of the most significant HIV symptoms in children and this girl is now gangly, almost taller than me. The nasty skin rashes that troubled me when she was a toddler have disappeared, and Nozizwe tells me that the school got all the kids tested a couple of years ago, when the new Health Minister started.

So Nozi and I disappear into the underwear section & I realise how strange it is to mother girls. She is awkward, horrified by the lacy push up bras, and asks for a very simple white sports bra. She’s much happier evaluating all of the bags on offer, and swaggers out of the shop proudly showing off a big macho American brand name on her back.

It’s much harder with Nonkhozi. I have to quell all of my attitudes and judgment as she explains about the holy water that the pastor at church has been giving her – and then shows photos of the ulcers on her back. Huge red sores, they’ve been getting bigger and now cover half of her spine. Her friends are praying for her, but it’s hard to bend and do all the chores. She doesn’t like my idea of going to the clinic – doesn’t think doctors can help, and anyway she needs to get the kids off to school in the morning. I persuade her to accept some ointments from the pharmacist, but am not surprised when 2 months later Nozizwe sends more gruesome photos, and says that Nonkhozi has just spent three days in hospital.

And then a year later, the next time I hear, “Hi Mommy, I’ve got something to tell you…” the call is about Nozi. She’s been raped by their uncle: the one that I met when we visited Sarah’s grave in 2011.We’d laughed at the time about all these random relatives turning up so I could take them for out lunch. Nozizwe tells me that he is in prison awaiting trial and that Nozi is doing “ok”. She’s trying to keep studying – her exams are soon.

And then this morning’s call.,I’ve learned to dread the one’s that start: “Hi Mommy, I’ve got something to tell you…” 

This time it’s Nonkhozi. She died yesterday evening. She was at home, in Hammanskraal, and their grandmother has been with them helping. Most of the kids are doing “ok”. It’s just seven year old Siphokhazi, her daughter, who won’t stop crying.

Nonkhozi will be buried on Saturday. I don’t expect they can find space close to her mum, but I hope they are in the same graveyard. Hilary and I plan to visit in 3 weeks time. We’ve just sent funeral money. They’ll get 4000 Rand – which is what I sent when Sarah died, and the same amount that I gave to Sarah on her 40th birthday.

When she turned 40, Sarah pulled down the corrugated iron boards of her settlement house and used that money to build a sturdy 3-room home out of breezeblock. After we visited her grave in 2011, I noticed that it had expanded to 5 rooms. I used to worry about the problems caused by that funeral money – so many more relatives would turn up and stay.

I’ve wondering whether I should have sent so much money this morning – money that makes it so much easier for the predatory uncles.

And I’m wondering what we will find next month.

And I’m still wondering what is the point of working for 35 years to end the AIDS crisis.

It’s still a crisis.  And it should not be in 2020.