Story

Winstone Zulu Is Dead

Winstone Zulu, a Zambian HIV/AIDS activist who spent the last 20 years of life spreading awareness about the disease that eventually killed him. Image by Antigone Barton. Zambia, 2011.

Winstone Zulu did not expect to live long, and he mentioned that often.

“Maybe other people have time to play games,” he said. “I don’t have much time.”

He died today, at 47.

The first time I met Winstone Zulu he was lying dressed, on top of his bed covers in his old room at Hope House, where he moved nearly 20 years ago after he first learned he had the virus that leads to AIDS.

He thought he didn’t have long to live then, in the early 90s. When I met him this July he had recently been diagnosed in New York with apparently untreatable HIV enteropathy—chronic diarrhea caused by the virus in his gut. He had returned to Zambia to die. In between, though, he had lived two decades, to bring awareness to the plight of the ignored and neglected people living with AIDS, to help treatment come to the poorest countries, to get married and have children, to enjoy good food with good friends. He wanted to do more though.

“There is so much people aren’t talking about,” he said. “The homophobia here is terrible.”

As a writer and a speaker he could accomplish much in a short time, if people paid attention. He had plans, and lying on top of his covers, so weak that lifting his hand tired him, he was more frustrated than sad.

I saw him a few more times like that, out of bed but weak, listless, summoning strength to talk. Then, suddenly he was well. His illness had been like that for years, but this time, he said, his strength seemed to be lasting longer.

“If this is real,” he kept saying. If this was real, he would catch up on his writing, speaking, organizing to draw attention to the ways disabled people were left out of AIDS responses, how help for sex workers hinged on changing them rather than the challenges they faced, how homophobia was hobbling prevention efforts.

A few days later he went to speak to staffers at a new USAID project called “ZPI” for Zambian-led Prevention Initiative. The head of the project, an American, was not there that day, but the staffers were receptive. The project’s mission is to target the epidemic by taking on structural causes, according to its web site, and Zulu told them their efforts would be wasted if they didn’t work to eliminate discrimination against sex workers, gay men and disabled people. He smiled and spoke in a lazy drawl but made it clear he had run out of patience with efforts that targeted “only those who are deemed more worthy of the right to life and dignity than queers, sluts and cripples,” as a print-out of one of his recent blogs for AIDS-free World that had been handed around the table put it.

We went to lunch and he ate voraciously, delighted by his own appetite. He talked about how his wife, who also lives with HIV, was strong and healthy and said they had always taken comfort that she would live to care for their children. “But it seems we’re going to be around together for a while,” he said.

“And I’m not even on any treatment now,” he added.

He had clearly become resistant to the medicine he had been on, he explained, as his viral load—one of the measures of how far the virus in an HIV patient’s system is advancing, how well the drugs are working—had risen steeply. He acknowledged he likely would need more soon—a new regimen, but clearly, he was enjoying his vacation from life as an AIDS patient.

He was a complex role model, people said. A shining example who sometimes set a bad example, drinking beer when he wanted to, though it combined poorly with medicine, and at least once before straying from treatment. About 10 years earlier he had briefly bought into “AIDS denialism” and stopped treatment. He later compared that phase of his life to “printing money when the economy is not doing well, or pissing in your pants when the weather is too cold. Comforting for a while, but disastrous in the long run.”

It was not easy to spend almost 20 years as an AIDS patient.

When I next saw him he was in bed again, this time under the covers. He thought he would feel better the next day.

He never really rallied though, according to the friend who wrote to tell me he had died. She had visited him the day before, and said the saddest part was that he still had work to do.

“He did not think he had finished his race,” she said.