Former leprosy patient Tereza Alves dos Santos, 71, sits in her room in Hospital Curupaiti, part of a former leprosy colony, on June 10, 2015 in the Jacarepagua neighbourhood of Rio de Janeiro, Brazil.Mario Tama/Getty Images
Nivaldo Farias was 19, a trombone player with a scholarship to a national music school in Rio de Janeiro, when he noticed a big red spot on his chest.
It was 1965. The doctor told him the spot – and another near his shoulder blade – was leprosy. And that he must depart, immediately, for the Curupaiti Hospital, here in what was then the countryside, to live in isolation with other lepers. Forever.
"It felt like a life sentence," recalls Mr. Farias. "Actually, no. A death sentence."
Back then, Brazil, like most countries in the world, isolated people infected with leprosy in dozens of colonies like this one, which stood on a hill behind iron gates and a thicket of palm trees. The isolation policy had not changed back in 1940, when a treatment for leprosy was discovered, or when the disease was declared fully curable in 1981, and in fact continued until 1986.
People such as Mr. Farias were interned for so long that even when they were finally given permission to leave, they didn't go. "Back when the gates were barred, we dreamed of going outside," Mr. Farias, now 70, recalled in a recent conversation on a bench outside the ward where he still lives. "But once they were unlocked, we didn't want to go out any more. We were like birds: You open the cage but they don't fly away."
And so a community of 3,500 people still lives at Curupaiti today. Only three of them have leprosy. Brazil still has a raging leprosy problem – 40,000 new cases a year – but nearly all of those people are treated as outpatients. Only a few suffer such acute complications they must be hospitalized here.
The rest of the people living in Curupaiti – and in other former colonies dotted around the country – are those who could never go home, and the children of people who were once interned who managed to reunite with their parents when the forced isolation ended.
The city has grown out to surround the bottom of the hill today, but Curupaiti endures atop it, a self-contained community that is at once ghostly and cheerful. The government spends almost nothing to run or maintain it, since there are so few people who need leprosy treatment, and except for a pavilion renovated with the help of a charity, the hospital is dilapidated.
Thirty patients live in the renovated ward; their now-treated leprosy left them with such severe complications that they require full-time care. Thirty-five more live in small dormitory rooms, with the assistance of staff experienced in managing their fragile limbs and tissue. The place is badly understaffed, but those who have sought out this strange milieu go about their jobs with a gentle cheerfulness.
The state government keeps promising that the hospital itself will be reincarnated as a new specialty centre, but plan after plan gets scrapped, as if no one can quite imagine repurposing the leper colony.
In 2007, the Brazilian government apologized for the isolation policy and awarded compensation (a monthly payment of about $600) to all those who were interned. Five years ago, the state government gave title of 200 of the houses to former patients of the hospital, who had been living in them for decades, and a further 100 to other long-time occupants, most of them children who had once been forcibly separated from their parents.
Today, a favela under the control of drug traffickers has crept up the hillside all the way to the edge of the hospital, creating a new sense of day-to-day anxiety in a place that once had, at least, a sort of bucolic security going for it.
When the compensation plan was announced, the Movement for the Reintegration of People Affected by Leprosy (known by its Portuguese acronym MORHAN) tracked down more than 10,000 people who had once been interned; two-thirds of those once isolated had left. But many did not go back home, instead setting off alone to build new lives, says Artur Custodio, the organization's director.
Some could not find their families – particularly those who had been taken when they were young, from far away (the hospital's record-keeping could charitably be described as slack) – while some families, embarrassed, cut ties. Other ex-patients did not believe they would be welcome back home.
Margarita Silva was interned here in 1979. She was 45, and had eight children, the youngest just six years old, when the painful bumps on her skin were diagnosed as leprosy. Seven years after she was forced to the hospital, the wardens announced that she could leave, and she tried to go home. But her children had been scattered among relatives because her husband was epileptic and could not care for them. There was no real place for her at home, she said – and ever since, she has lived in a room in a women's dorm with a narrow single bed, worn linoleum floor, a profusion of plastic flower arrangements and a small TV that blares telenovelas.
Adriene Mendonca, who has been director of the hospital for the past three years, says Ms. Silva's story is not as strange as it sounds: Many patients found that when they tried to go home, people edged away from them on sofas or refused to eat the food they had cooked. At the hospital, they felt like they fit in – an idea the hospital staff had worked hard to cultivate. "It was like brainwashing that they did – 'Your place is here.'"
And while some of the stigma of leprosy has abated (although not disappeared) they cannot contemplate leaving today.
"People who have been here for 50 years can't go home – how could they?" Ms. Mendonca asks. She is mystified by the fact that Brazil kept isolating people long after there was treatment; she and Mr. Farias chalk it up to the twin effects of the military dictatorship that then ruled Brazil and the stigma of the disease.
When Mr. Farias was diagnosed, he managed to strike a deal with the doctors: He had only two months left at school before his final exams, and so he stayed in isolation in the infirmary and played his concert pieces across the room from the examiners. The next day, he was sent to the colony – carrying his expensive imported trombone, which the school gave him since no one else would touch it.
Mr. Farias had lost sensation in 50 per cent of his body by that point, but he had no open lesions; even today, the residual effect of the disease on his body is not immediately apparent, the way it is for many of the other patients.
For hours each day he kept his deadened hands bound to a square piece of wood with his fingers extended, so they would not begin to curl.
At the colony, he was put immediately to work. "They called it 'work therapy' – they took the people in the best shape and made them employees, in the administration or as the nurses, gardeners, security, barbers," he says – to fill the roles no one wanted to come from outside to do. Only the doctors and the cooks were from outside the colony; patients couldn't do the cooking because they could not feel when their skin touched the hot stoves.
He married a woman who was the sister and daughter of patients; they had a child and were given one of the small houses that dotted the grounds.
When the isolation policy ended, they stayed. "I didn't see a way to live outside. I had no job training, no connections. It's a jungle out there, and I had no training in how to survive in it. How could I go out there?"