Love, Loss And Beauty Pageants: Inside A Cuban HIV Sanitarium

Enlarge this image toggle caption Rebecca Sananes for NPR Rebecca Sananes for NPR

On a terrace outside his Havana apartment, Eduardo Martinez nurtures a small schefflera tree. On a Friday afternoon in January, he looks up at its leaves fondly.

"I got it when I was in the sanitarium. I put it in my living room and it began to grow until it reached the ceiling," he says in Spanish through a translator.

When he left the sanitarium in 1996, he took a clipping from the plant. "It was so small," he says. "But it has turned into this forest that you have here — so this is a memento from that time."

The early years of AIDS in Cuba, after the virus arrived on the island in 1986, was a complicated time. The Cuban government created a system of 14 hospitals and living facilities around Cuba, called sanitariums, where anybody who tested positive for HIV was sent for life. Martinez became one of them in 1991, and is one of the only people of his sanitarium generation still living.

People had mixed feelings about the system. Critics called them prisons; supporters credited them for helping to control the epidemic. Martinez calls the sanitariums a double-edged sword.

"The purpose of the sanitarium was to stop the disease from being spread," he says, "Which was unsuccessful, because the disease continued to propagate."

Only one sanitarium remains — the first one to open, the one Martinez called home for five years in Santiago de Las Vegas outside of Havana. Now, the sanitarium is more hospital than quarantine, a voluntary clinic for those who need extensive HIV care.

Martinez has lived with HIV for 25 years. "As compared to before, HIV today is like a cold," he says.

Today, Martinez puts on extravagant fashion shows and performances at the Tropicana — one of Havana's most famous nightclubs — for audiences including the Central Committee of the Communist Party of Cuba.

When he's on stage, he transforms himself into a towering blonde woman named Samantha. But back in 1991, Martinez thought he was at the end of his career — and possibly his life.

He had been a well-known designer, creating costumes for popular television shows and calling himself the "Christian Dior of Cuba." At the height of his career, on one of his costume tours, he had an affair with a dancer.

"He didn't know that he had HIV," Martinez says. "And when the tour was finished, I came back to Havana and some months thereafter, I began to feel bad."

A doctor-friend sent him for an AIDS test, which came back positive. But unlike many Cubans at the time, Martinez had what he remembers as a good life: a booming career and close ties to family, especially his parents. For him, being sent to the sanitarium would mean this lifestyle was over. For a full year, he kept the diagnosis secret as the doctor waited for room in a sanitarium. Finally, one day came a knock on his door.

Enlarge this image toggle caption Rebecca Sananes for NPR Rebecca Sananes for NPR

"I didn't want to go, but they would come for you and take you by force," he says. At the sanitarium, patients were interrogated by officials and expected to reveal their sexual partners, so they too could be tested for HIV.

At the time, some people saw the sanitariums as a place of refuge amid widespread homophobia and poverty. The living quarters and health services were funded by the National AIDS Commission, the government's program to quash the epidemic.

Martinez had the rare luxury of living in one of the few residences in Cuba that had air conditioning and steady food supply. Despite that, he fell into depression and spent a month living in a psychiatric ward at the sanitarium.

"At first, it was very sad for me, because I didn't understand why I was infected and why I had to go be interned in that place," he says. "And on top of this, that was killing my career. I was at the top of stardom at that moment. I went on a hunger strike when I arrived."

Soon, however, he reconciled himself to the idea that the sanitarium was his whole world for the foreseeable future. "I couldn't just lie down there and wait for death," he says. "I was an active professional. And I waged a revolution there."

So, tucked away from the rest of the world, "Samantha" was born.

"That was where I transformed myself for the first time" he says in his current Havana apartment filled with tiaras, blonde wigs and trophies from beauty pageants. "I needed a model in order to continue producing designs, and I just used myself as a model."

But Martinez did not just transform himself. He took his fellow patients — including the man who designed the covers for then-President Fidel Castro's books — and built a community of artists devoted to self-expression.

Martinez began to change his attitude about the sanitarium: It was no longer his prison, but what he called his "big house."

"I used everybody around me, I made fashion shows, I made a movie theater, I created theater, so I revolved everybody around me," he says.

In many ways, he became a resident therapist, he says: "The patients were needing a lot of entertainment, distraction."

He was even provided a budget and facilities from the sanitarium in order to put on his shows. In his opinion, he came to discover that if he "kept the mind of the patients busy, the immune system wouldn't be depressed," he says.

And while the gay community outside the sanitarium struggled against violence and discrimination, the sanitarium became a haven. Martinez praises the sanitarium doctors as open-minded: "If they didn't have an open mind, they would have to, because there were many gay people there," he says.

"What I managed to do in that place, I wouldn't have been able to do on the street outside," he adds.

Like the rest of the world, Cuba sought cures for HIV, and many patients in the sanitariums became voluntary test subjects for potential cures. Martinez was slated to be one of them before he opted out of a controversial experiment.

"It consisted of heating the blood in order to see if the virus would die" he explains. "But the thing is that with this, not only would the virus die, but [it would destroy the proteins in the blood]." The night before he was slated to go through with the test, he decided against it — a decision he now sees as a narrow escape. "The people who participated in it, all of them died," he says.

Martinez, who has a spiritual air about him, calls his survival fate.

By 1995, the government could no longer afford to house HIV patients for life. With the fall of the USSR, Cuba stopped receiving funding from its communist benefactor and faced massive budget cuts throughout the country and finally to the public health system.

Some patients left on their own volition, and eventually the remaining patients were kicked out. Martinez was one of the first patients to be offered his freedom, but just as it was difficult to go into quarantined life, it was hard to come out.

"I refused to leave because I said I was too committed to the community inside the sanitarium," he says.

But by 1996, he knew it was time to go. Despite the homophobia and discrimination that still persisted against HIV-positive people in Cuba, Martinez persevered and built what he now calls his second career — for which he partly credits the sanitarium.

"That's where Samantha started," he says with a proud smile. "I was the first one who engaged in doing very daring things. Never before had there been cross-gender performers at Tropicana."

These days, when Martinez thinks of the sanitarium and the friends he made there, he cries. "We would dream [of having a] theater to do our trans shows," he says. "We never thought it would be possible."

Smiling, he adds, "I'm happy to have been able to reach this moment."

This story is part of NPR's reporting partnership with WBUR and Kaiser Health News. Rebecca Sananes' trip was funded through the Pulitzer Center on Crisis Reporting.