The AIDS beat

Award-winning journalist Stephanie Nolen challenges the stigma attached to the disease in Africa and at home

Stephanie Nolen, right, speaks to a child in Alexandra township, Johannesburg.
Stephanie Nolen, right, speaks to a child in Alexandra township, Johannesburg.
Credit: 
Supplied photo by Hannelie Coetzee

Like most journalists, the Globe and Mail’s African correspondent Stephanie Nolen used to have a policy of not giving her sources money.

“You don’t want to buy a story and you don’t want to warp the situation you’re reporting on,” she told the Journal in a telephone interview from her home in Johannesburg.

“There’s often logistical problems, there’s a safety issue. … You just can’t do it.”

That policy changed one day in late 2005 in a tiny village in Swaziland. Nolen was travelling with Siphiwe Hlophe, an HIV-positive woman who started the support network Swaziland Positive Living in 2001.

Hlophe took Nolen to a mud-brick building that was home to 13-year-old Tengethile Tshabalala and her two younger siblings. Nolen found the three children dressed in ill-fitting school uniforms which they had no opportunity to wear since their parents died three years earlier, leaving them without money for school.

“I went to an ATM and … I paid for their school fees,” she said.

“The new policy was now, ‘Give away money at any possible opportunity.’ ... It’s not sustainable and it’s not long-term and all the reasons I didn’t do it before are still true. But that’s what I do now. There are some people in the book, I’m paying for them to be on [anti-retroviral medication], and it’s a funny policy—it’s totally ridiculous.”

The book she’s referring to is 28, which recounts the stories of 28 Africans touched in some way by AIDS: Prisca Mhlolo’s family attacked and shunned her after she told them she had AIDS; after Zackie Achmat was diagnosed with AIDS, he founded the Treatment Action Campaign that pressured the government to make anti-retroviral medication—vital in keeping people infected with HIV/AIDS alive and relatively healthy—available and which continues its AIDS advocacy; Lefa Khoele, a 12-year-old boy with AIDS, is taking antiretrovirals and dreams of going back to school and someday becoming prime minister of Lesotho.

She will talk about 28 at Queen’s on Monday night.

Published in April, 28 has been shortlisted for the Governor General’s Award. Nolen has previously won multiple National Newspaper Awards and this year was nominated for two more. She recently won the PEN Canada Paul Kidd Courage Prize for her coverage of HIV/AIDS in Africa.

The book was several years in the making. As a Globe and Mail correspondent covering conflicts in Iraq and Afghanistan, Nolen spent the rest of her time reporting from Africa. There, she said, she encountered a scourge entirely different from war­­—one no one seemed to want to discuss.

HIV/AIDS was decimating African communities but wasn’t garnering much interest elsewhere.

“The devastation that it was wreaking on these different countries was a story on a much, much greater scale,” she said. “I thought, ‘Where the hell is everybody?’

“I persuaded the Globe we were missing a really big story and whether or not there were other media here to validate our choice, we ought to be here,” she said, adding that her editors were initially skeptical.

“Their fear was that … the story would be the same: people are dying and no one’s doing anything,” she said. “For reasons that elude me, you can’t put that in the newspaper every day. People were thinking, AIDS? What’s one more disease in a place that has all these diseases?”

HIV/AIDS is different from most diseases because it affects the most productive members of society, Nolen said. Not only are entire countries deprived of essential workers such as doctors, nurses and civil servants, but many families lose primary wage-earners, leaving them vulnerable.

“They don’t have a sort of safety net or something to sort of catch them, so when you lose the one wage-earner for a household or when someone gets sick and all the resources go towards treatment costs or funeral costs, there’s nothing left,” she said. “It’s not like malaria. I mean, yes, a lot of people die of malaria; yes, lots of people die of other things. But the particular pernicious way AIDS spreads through intimate relations among your sort of youngest, most productive generation, it kind of brings countries to its knees.”

The oldest sample of HIV scientists possess dates from 1959. This is shocking, Nolen said, given how little attention the disease garnered for decades afterwards.

“I’ve interviewed doctors who were working in Tanzania … in the ’70s, late ’60s, who knew something awful was happening but they couldn’t get someone in the outside world to pay attention to another disease in Africa,” she said. “Why did we let it get to the position in Africa where 30 per cent of the population is affected?”

Things are getting better, however: about 30 per cent of the people who need anti-retrovirals are getting them, compared to about one per cent a few years ago. It’s not great, Nolen said, but it’s better than it was.

“I look at even in the four and a half years I’ve been living in Africa, there’s a massive response to the pandemic that wasn’t there four or five years ago,” she said. “The argument that you can’t prevent or you can’t treat HIV/AIDS in Africans seems largely to have been put to bed.”

What’s significant about this change, Nolen said, is that it comes from Africa, as opposed to external bodies.

“People here who had nothing did what they could in their communities,” she said. “By the time the West finally came around to offering some feeble assistance, there were some amazing community-based care and treatment programs all over Africa.”

But the stigmas associated with HIV/AIDS continue to present a challenge to lessening the crisis, Nolen said.

“Because it’s HIV and because it spreads through intimate relations, there is this whole extra basket of fear and shame and enigma,” she said, adding that this stigma isn’t unique to Africa.

“Here [in Africa] it’s the perception that you have been unfaithful. … In Kingston, you don’t want to say you’ve had it because it suggests you’ve been in prison or it suggests you’re an injecting drug user,” she said. “Whatever it is in your community that there is a set of social stigmas around is why [you can’t talk about AIDS]. Nobody wants to admit they do these things and nobody wants to talk about preventing it from happening.”

Now that treatment is more readily available, Nolen said, that stigma is lessening.

“When it’s no longer a fatal illness or an immediately fatal illness—that changes people’s willingness to admit they have it.”

When she began work on 28 in 2003, Nolen put together a list of everything she thought a person would need to understand the crisis—the political, economic, medical and personal fallout from the AIDS crisis.

“I went looking for people whose personal stories would tell those issues,” she said. “I wanted to talk about migrant labour because it’s so important, so I went to one of the biggest truck stops in Africa and hung around.”

Just outside Nairobi, Kenya she met Mohammed Ali, a transport truck driver who was HIV positive and claimed he had had sex with 100,000 women.

Hopping into a truck with a complete stranger for a road trip to the Ugandan border didn’t ever occur to Nolen as something she ought to be wary of.

“If you find someone willing to tell you intimate details of their sex life as you drive along these abysmal highways, it will probably be fine, and it always has been.”

She swears she has no idea why people open up to her.

“The astonishing thing about this job is you have people who talk to you about their sort of most painful thing in their life and they say yes. I don’t think it’s magic or anything secret; I think you just ask,” she said, adding that it may have something to do with her unfeigned interest in their story and in HIV/AIDS.

“People understand that I really am genuinely interested and I don’t come to it with perhaps the judgments that the people in their own communities do,” she said. “I am constantly amazed that people agree to answer my questions. … I don’t know why people don’t tell me to fuck off all the time.”

Nolen said it’s hard for her to tell whether people outside Africa have fewer misconceptions of the crisis, but some progress is being made.

“I think there is no longer this perception that it is hopeless and a disaster,” she said, adding that she recently got an e-mail from someone interested in helping AIDS orphans in Africa and wanted to know how to send them drugs.

“People have stopped thinking of this as a palliative situation. … It’s improvable.”

But some stereotypes about the disease are still common in North America, Nolen said.

“There is still an alarming, a real perception of, ‘Oh, people got themselves into this mess, Africans have too much sex, Africans don’t care for themselves or for others.

“A lot of those little chestnuts have not changed.”

Never during the years she has documented the devastating faces of Africa’s HIV/AIDS crisis did Nolen feel the stories she was documenting too much to bear.

“Where the fuck would I get off feeling sorry for myself? I have not been shunned and isolated by my community. I’m not dying from a perfectly treatable disease because I don’t have 200 bucks. I have nothing to complain about,” she said.

“It’s more infuriating than depressing.”

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Stephanie Nolen will speak about her book, 28 Stories of AIDS in Africa, on Nov. 5 in Dunning Auditorium at 7 p.m. Entrance is by donation and proceeds go to HIV/AIDS Regional Services and the Kingston Grandmother Connection, an organization helping grandmothers in Africa care for their grandchildren orphaned by AIDS.

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