Leading South African journalist Jonny Steinberg spoke at Northwestern University Dec. 1 as part of the school's World AIDS Day programming.
With several books under his belt and a teaching position at Oxford University, the former Rhodes scholar has emerged as a prominent voice on the AIDS pandemic. South Africa has one of the highest HIV prevalence rates in the world.
During the hour-long presentation, Steinberg shared stories from Lusikisiki, a rural South African village where he's spent years reporting. He focused on the somewhat surprising ways antiretroviral therapies have altered South African society.
"What people make of treatment when it arrives plays such a large role in shaping what it comes to mean," Steinberg said. "And what it comes to mean plays a role in determining who wants it and who doesn't want it, who comes to get it and who doesn't."
As little as a decade ago, Steinberg said, most South Africans had never even heard of treatments. Now, 1.6 million people use the lifesaving medications.
Young women have been significantly quicker to adopt antiretrovirals than older males, the traditional patriarchs in South African villages. Women account for about 53 percent of HIV-positive individuals, but as many as 70 percent of those on treatment are female.
Steinberg said reactions to new technology are always highly gendered. In this particular case, women are more comfortable with healthcare since they frequently access it for family and childbearing concerns.
"Many men only come forward when they're desperately ill," he said.
It's common for women to form female-led support groups. Members share medical knowledge, and many have even gone on to enroll in healthcare-related diploma classes or seek work in the state government.
"Being HIV-positive has become a source of a career," Steinberg said, "and not just any career, but one with middle-class trappings, one that will elevate many women considerably, taking her away from her village and into a city or town, and most important, free her once and for all from all the men's gifts."
Trading sex for money or gifts is a common practice for many poor women, and the situation has gotten worse as the economy's crashed. Female villagers see support groups as a source of independence, and many males feel isolated from the matriarchal assemblies.
"Antiretroviral therapy has created a feminized path of upward mobility," Steinberg said. "And women want to keep this path a feminine one. They don't welcome male competition; if they share it, they may lose it."
Despite shifting social dynamics, Steinberg is hopeful that more South Africans will adopt antiretroviral therapies in the future. The country has already begun advocating preventative measures such as male circumcision and early treatment.
Still, stigma poses a threat.
"Shame is unbelievably corrosive," Steinberg said. "When shame gets hold of a person, you'd rather die than be alive, than be exposed. You stay at home, and your body literally rots when there's treatment a mile away. … People choose to die … because they're gripped by shame."
Associate Professor Doug Foster, who facilitated a Q&A session with Steinberg, said media is partly to blame. He remembered first learning about AIDS while living in San Francisco in the 1980s.
"You didn't hear about this disease from the media. You heard about it word-of-mouth," Foster said. "It would've mattered tremendously to tell people in very straightforward terms: semen, blood, vaginal fluid, infected needles … instead of [ using vague terms like ] 'bodily fluids.'"
When the media did report on AIDS, Foster said, it mischaracterized the disease.
"Larry Kramer and other activists were the first to raise the possibility that what was being reported as a marginal story with a marginalized population could potentially kick into something much bigger," Foster said.
Thirty years later, an estimated 60 million have been infected, and 30 million have died.
Foster praised Steinberg for reporting on the disease with incredible depth and understanding as many around him ignored it, citing 'AIDS fatigue' and diminished newspaper sales.
University President Morton Schapiro voiced hope that other journalists and activists would continue to focus on HIV.
"What worries me about this 'AIDS is losing' and 'AIDS-free generation' [ talk ] is that it really belies the facts," Schapiro said. "The fact is: AIDS is everywhere. In certain parts of the world, it's even growing. If there's anything that worries me about all this successive celebration, it's that we might get complacent. As soon as we get complacent, the nightmare of AIDS … is going to return."
Steinberg spoke in the McCormick Tribune Center Forum at Northwestern's Medill School of Journalism. His 2008 novel Sizwe's Test: A Young Man's Journey Through Africa's AIDS Epidemic was named one of The Washington Post's Best Books of 2008.
This story is part of the Local Reporting Initiative, supported in part by The Chicago Community Trust.