I recently announced a storytelling project I’m working on called My Favorite Joburg People. I chose four people in Joburg, each of whom has an amazing story to tell, and interviewed them and shot their portraits. I’ll be presenting the stories and portraits at an event called Translating Joburg – Storytellers, and also publishing them on my blog. This is the third of the four stories.

These stories are longer than my normal blog posts.

Florence Ngobeni-Allen, May 2016.

Florence Ngobeni-Allen

I met Florence in August 2010, just a few weeks after I moved to Joburg, when I was hired to interview Florence and her family for an assignment with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). Florence was a spokesperson for EGPAF, who I had worked for in Washington D.C. before my move to South Africa. So although we’d never met, I knew about Florence through stories I’d read.

When I met Florence she was pregnant with her second son, Kulani, and I went to visit her after Kulani was born. My mother was visiting from America at the time and I have lovely pictures of Mom holding Kulani.

The following year, when my boyfriend Jon’s alcoholism ramped up and I didn’t know how to deal with it, Florence was there for me. One day, Jon came home drunk and I decided I’d had enough. I left the house in Jon’s car, bringing nothing with me but a handbag, and didn’t return for several days. Florence was the first person I called.

I remember when Jon died, and how grateful I was when Florence came to visit me the next day. I felt like she was one of the few people who understood what I was going through.

To explain why I felt that way, I need to tell Florence’s story.

Florence doing one of the things she does best: making friends.

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Florence was born in 1973 at Chris Hani Baragwanath Hospital in Soweto. Florence’s mother, Julia, gave birth to her at the age of 14. Florence was raised in her grandmother’s home in Alexandra Township, also known as Alex.

“Alexandra Township is a very violent township,” says Florence. “You knew that your neighbors were kind and loving, but the streets were a different place. At five o’clock you had to be home…Every weekend we knew there would be a dead body on the streets.”

It’s hard to imagine any childhood being more difficult than Florence’s. No one in the family had regular employment when Florence was small, and finding enough food was a daily challenge. “We used to eat from the dumps…There were times we didn’t have clothes or shoes to go to school.”

Florence’s grandmother played a Chinese numbers game for money. On days when her grandmother won, Florence knew they would eat meat that night. When there was no food at home, Florence went to a neighbor’s house for dinner. “My grandmother always said, ‘We’re the children of the big ancestors. So don’t worry, God will give us something.’”

There were good memories, too. “I still remember the beauty of just playing on the streets with no shoes…just playing with kids. Those were the good parts.”

Eventually Florence’s grandmother found a job as a live-in domestic worker, and Florence was sent to live with her uncles. “It was a very ugly situation. They were selling alcohol…There was a lot of abuse. I was hit. I bear a lot of scars on my body.”

No matter how dark her childhood became, Florence always saw something different for herself. “I knew this was not the life I want to lead. I don’t want to end up being a girl that drinks all the time and goes to a shebeen [informal bar].”

Florence’s grandmother brought home old copies of Reader’s Digest for the family to use as toilet paper. Florence would read the stories in the magazines, searching for characters who she could pretend to be. “I was always interested in reading. It was my way of escaping the poverty and abuse that I had at home.”

As a teenager, Florence imagined escaping her situation through a man. “The one opportunity we had was to at least find a nice boyfriend who would marry you. I always dreamt of dating someone who wasn’t a gangster, who didn’t abuse me.”

Florence’s first exposure to life outside the township did come through a man. When she was around 18, she started dating a boy who played the guitar at a church – a church outside the township, with a mostly white congregation. He invited Florence to come along.

Florence’s visit to this church was the first time she can remember leaving Alex.

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The relationship with the boy didn’t last. But the connections Florence made at church changed the direction of her life. It was the early 1990s, and Florence was only vaguely aware of the massive upheaval her country was experiencing. But Florence’s life began to change, just as South Africa was changing.

Florence was symbolically “adopted” by a family in the church, who opened a bank account in her name to help her with food and school fees. She made friends with white women who were attending university. Through a university volunteer program that she learned about through one of these friends, Florence met a boy named John. John, who was white, eventually became Florence’s boyfriend.

During her relationship with John, which coincided with Nelson Mandela’s release from prison and the birth of democracy, Florence slowly began to understand what she calls “the depths of apartheid”.

“John couldn’t come to the township…He was scared to come into the township. But he took me to meet his parents in Boksburg. When I was walking with him on the street, people started throwing eggs. We couldn’t even go into a restaurant together.”

Nonetheless, they stayed together and Florence moved in with John. She attended one of the first integrated high schools on Joburg’s East Rand. “My family didn’t care about me,” says Florence. “If I disappeared for a month, there was no one who called…I was living in these two worlds of being a girl from a township, and I knew everyone and understood everything [in the township], but then I also had a life outside the township, which was mainly church and this guy that I met.”

The clash of these two worlds was too strong, and eventually Florence and Jon split up. “John started seeing other people while I was with him. And as a result, I became very depressed and I left. I went to stay back home in Alex, and that was the beginning of the problem.”

Very soon after Florence arrived back in Alex, 21 years old, with no job prospects and no family support, she got married to a man named George. I ask Florence how she met George and what he was like. “There was not even much to say about George. I met him through friends in Alex and he was a regular guy. He was working. He worked somewhere in town as a bartender, and for me…I had someone who cared to pay my bills and make sure I had food on my table.”

George paid lobola (the traditional South African “bride price”), and thus he and Florence were married. Immediately, Florence became pregnant. Because she was so young and “knew nothing of babies”, Florence decided to leave the city to stay with her mother during the birth of her child. Julia had married and was living several hours to the north, in Limpopo Province.

Once in Limpopo, Florence sent letters to George in Alex. None of her letters were answered.

Florence gave birth to a baby girl named Nomthunzi — she was overjoyed to have a daughter. But soon after Nomthunzi was born, the baby got sick. “I thought she had whooping cough…the sound of it was not good. This cough didn’t go away.”

Nomthunzi’s cough began when she was about three months old. Two months later, Florence decided to return to Joburg with Nomthunzi. She went to a clinic and received the devastating news that her daughter was HIV-positive. Florence was HIV-positive as well.

After learning this news, Florence tried to find her husband. “The first person I looked for was [George] because he didn’t even know his daughter,” Florence says. “So when I went to his family, they told me George died last month. ‘George just died,’ they said. ‘We buried George.’”

Florence asked George’s parents why they didn’t write to tell her of George’s death. “They said, ‘We didn’t care to look for you because you killed George. You gave him AIDS.’”

Less than a month after Florence returned to Joburg with her newborn daughter, Nomthunzi died.

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“When I was given the news about Nomthunzi, I went into a very serious dip. I remember the first two years — I didn’t wash, I didn’t go out, I didn’t make an effort of anything. I was just crying, day in day out.

“The hardest thing for me was to know that as a result of my sexual behavior and my life and where I was born, a soul has left this world. An innocent soul. And I had to live with that. I had to live with knowing that I was the reason that my baby died. Of course there was blame, there was stigma. I didn’t mind. It was more like, I deserve it, you know? Whatever was happening.”

I’ve heard Florence tell this story a number of times. She can never do it without crying. “In the township, when I moved around, people would yell ‘AIDS!’ When I went to the toilet, people would come with bleach and clean up after me.

“I think the turning point, for me, was one day I was walking down the street and this boy, who was like a gangster that I’d grown up with – he approached me and said, ‘Florence, how can you just give up like that? You’re beautiful, you’re young. How can you just give up?’ And then I went home, and I starting calling the doctor that helped me with Nomthunzi – Dr. Gray – and I kept saying, I need a job, I can do anything, I can counsel women, women like me who don’t know they’re HIV-positive and they’re losing children. Because you could see, there were lots and lots of children just dying like that.

“And after endless calls, she finally gave me a job to be a counselor. And that changed my life.”

Florence got a job at Chris Hani Baragwanath Hospital, the same hospital where she was born, working for Dr. (now Professor) Glenda Gray, the same pediatrician who treated Nomthunzi before she died. Professor Gray ran the hospital’s Perinatal HIV Research Unit; Florence started there as a junior counselor.

“I didn’t have my matric [high school diploma], because I had failed matric, so I decided I was going to go to night school. And I started studying again. People asked, ‘Why are you going to school? You’re going to die.’ I said, ‘I’m not dead yet.’”

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It was 1997. Florence was 24 years old. She quickly developed a knack for connecting with the clients she counseled.

“I learned more and more and more about HIV,” says Florence. “Listening to women’s stories, coming from all over Johannesburg…It was hard to follow women who were just diagnosed HIV-positive, because they would be moving all the time. I could relate to that.

“You would see a person and they were diagnosed HIV-positive and you didn’t hear from them anymore. You would see a mother and a child and…simple things, they can’t feed the child, there’s no food at home and this child is malnourished because of the disease.

“Through working at Chris Hani Baragwanath Hospital, I started understanding that Johannesburg was like the hump of HIV,” Florence explains. “I would see people coming from all sorts of directions, coming to Bara, because that was the only place where they could go.”

At this time in South Africa, antiretroviral drugs (ARVs) were not available for people living with HIV. Florence didn’t expect to live long herself, but she became singularly focused on saving other women and children from her and Nomthunzi’s fate.

Florence recounts stories about the women she met at Bara, women who risked everything to save the lives of their babies. Pregnant women with no money, who jumped off moving trains to avoid the fare and make it to Soweto. Women who arrived at the clinic with their faces and bodies stained with bruises, beaten by their husbands for disclosing their HIV status.

Florence did her best to help, knowing that the treatments she could offer these women were only experimental and may not help them or their babies. “It was no longer about me,” says Florence. “I was living to save people’s lives. I saw the need to fight for women and children. I shared my story, and the fact that I was still alive and healthy – I gave them that. I wanted to die knowing that I had given somebody hope, and that was the only medication I could share.”

Despite the perpetual tragedy, this was an exciting period in Florence’s life. “Living in Johannesburg, it was also a time of unity,” Florence explains. “It was post-1994, there was HIV, there was synergy between black and white – people started coming together. We fought, as much as we could. I joined the Treatment Action Campaign…. My networks grew, from a person who was working in the hospital, to a person who was traveling, meeting incredible people.”

Florence was in a special position. Because of her upbringing and her personal experiences, she had a unique understanding of the challenges facing poor women infected with HIV. These women could hear Florence – they understood her. Florence also understood the bigger picture of the HIV epidemic, and she knew how to communicate it to the public. The rest of the world could hear her too.

Professor Gray began traveling with Florence, taking her to conferences and speaking engagements. Florence remembers speaking at a United Nations conference, debating the issue of whether or not Africans can tell time. “Scientists were saying, ‘Why should we give African women medication when they have to adhere to it and it has to be taken 12-hourly and they can’t even tell time?’. I was part of advocating, saying no, black people can tell time. I’m from a township. I know life in rural areas, I know life in urban areas, and actually black people are very smart and I don’t know what you’re talking about.”

Florence worked as a consultant to UNICEF, UNAIDS, and the World Health Organization. She traveled the world, speaking to Oprah Winfrey, Bill and Hillary Clinton, Bono, and Barak Obama (!) about prevention of mother-to-child transmission of HIV.

I ask Florence what drove her. What motivated her to grow from a depressed, penniless young woman – who had lost a newborn daughter and had a death sentence looming over her own head – into a powerful champion of women and children who traveled the globe persuading world leaders to support the expansion of HIV prevention and treatment in Africa?

“I’m the person who goes for it,” Florence says. “I go where people say you can’t go. I grew up poor, and in circumstances where I could have simply given up…But I’ve always believed that you knock at the door, and if they don’t open, you come back and knock, and keep knocking and knocking and knocking. So, that’s exactly what I did. I kept persevering.”

Florence believes that Professor Gray also saw something unique in her – a conviction that Florence wanted to fight for something bigger than herself. “[Professor Gray] saw a person who was passionate about making a difference,” Florence says, “And she wanted to give it a try.”

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Florence was in a place where she never dreamed she would be – with a good job, a decent education, and her health. ARVs eventually became universally available in South Africa; people with HIV (including Florence) were living healthy lives, and transmission of HIV from a mother to her child became easily preventable. Florence couldn’t get Nomthunzi back, but she could experience the joy of other HIV-positive women giving birth to HIV-negative babies.

In many ways, Florence had it all. But in her mind there were a few things missing.

In the early 2000s, through work, Florence met a man named Rob. Rob was from the U.K., working in South Africa as a volunteer. Rob and Florence started dating.

“I’ve always disclosed my status to my sexual partners,” says Florence. “It’s either you take it or you don’t. So I started asking [Rob], ‘Do you know I’m positive?’” Rob did know Florence’s status, of course; she was all over the news at the time. Rob told Florence that he’d read her story, and in fact he was so inspired by it that he wanted to stay in South Africa and work in the field of HIV. “I felt comfortable around him. I felt that I’m in love with someone who understands me and understands the world that we live in.”

Florence and Rob at a wedding in December 2011.

Rob and Florence were married, and they began to make plans for conceiving a child. Florence had already done extensive researchand knew that it was possible for her to safely give birth to an HIV-negative baby. Their first son, Alexander, was born in 2006.

“He tested negative, and we thought, ‘Oh! This can be doable.’ A few years later, we decided to have another.” Kulani was born in 2011.

Florence and Kulani, just after Kulani was born in early 2011. (Photo: Jon Hrusa)

Florence wasn’t finished yet. “I’ve always been keen on education – it was just one thing that I wanted to do, all my life. But through odds, I couldn’t, because of the circumstances that I grew up in. So I approached the Elizabeth Glaser Pediatric AIDS Foundation, to say, ‘As much as I’ve done, I’ve met leaders, I’ve worked with researchers all my life. But I still feel this sore point that I don’t have a degree, and I would like to have a degree.’ And they decided they will pay for my education. I left work and I started studying full time.”

Florence cries again, remembering the moment when she first got her student identity card and walked across the campus of Wits University. She was 40 years old. “Being a student at Wits University, was like, oh my God. It’s possible. There’s nothing impossible in this world.”

University was very difficult for Florence, who juggled international consulting work for EGPAF and raising a family while pulling all-nighters and struggling to keep up with her classes. But in December 2015, she completed her bachelor’s degree in international relations. Florence is the first person in her family to earn a university degree.

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Today Florence lives with her family in Johannesburg’s southern suburbs, but still owns a home in Alex and visits often. She’s exploring various professional opportunities, hoping to use her degree to move her career in new directions.

And for Florence, there is always another goal on the horizon. “My one other key dream, that I would like to do maybe in the next four or five years – I want to become a lawyer. I want to study law. I hope by then, my brains will be working and I’ll be healthy enough to take up that role.

“The universe is open for those who want to learn more, to do more. The more you knock, the more doors will open.”

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To me, the most remarkable thing about Florence is that she defies everything. She defies what seems to be possible. She defies categorization. She defies…belief. Florence touches upon this defiance during the last minute of our interview.

“I don’t believe there’s a stupid person, because I’ve been called stupid. I’ve been boxed, but I refuse to be boxed. I refuse to be identified as a person living with HIV. I refuse to be identified as a mother. I refused to be identified. I refuse to be categorized.

“I am Florence, and I’m human, and I’m a mother of course. I’m HIV-positive, but that’s not me. That’s not all that I can offer in life. Every one of us has more than what we are, and only when we’re given a chance to strive for more, we do.

“I believe I am a hurricane – that’s not going to bring destruction, but better life.”

The man in the photo, taken in September 2015, is Bob, not Rob. Bob is a good friend of both Florence’s and mine. (I realize this is confusing but the shot is too cute not to include.) Kulani, in red, was four at the time and Alexander, in black, was nine.

I ask Florence if there’s anything more that she wants to add.

“Thank you for being my friend,” she says.

Read all of the My Favorite Joburg People posts.