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Violence, fear and stigma

Researchers from several fields are using historical surveys and DNA tests to bring families separated by Hansen’s disease back together

At 88, Nivaldo Mercúrio lives at the old Bauru colony hospital, his home since being interned there following a diagnosis of Hansen’s disease  at age 17

Eduardo CesarAt 88, Nivaldo Mercúrio lives at the old Bauru colony hospital, his home since being interned there following a diagnosis of Hansen’s disease at age 17Eduardo Cesar

in Bauru

Nivaldo Mercúrio was seven years old when a black ambulance bearing the letters DPL, Department of Leprosy Prophylaxis, stopped in front of his farmhouse in Itápolis, in rural São Paulo State. Two doctors got out and asked to examine the entire family.  “They discovered that my mother had Hansen’s disease, what they used to call leprosy, and a few days later they came back to take her away,” he recalls, now 88 as he walks along the streets of the old Aimorés colony hospital, now part of the Lauro de Souza Lima Institute in Bauru, one of the main treatment centers for those with Hansen’s disease in the state of São Paulo. “Then the doctors told my father, my siblings and I to get out of the house and they set it on fire.”  In 1933, compulsory isolation and burning of houses inhabited by those suffering from Hansen’s disease were the methods adopted to prevent other people from becoming contaminated with the disease that since medieval times has evoked feelings of strong revulsion.

Ten years later, Nivaldo was given the same diagnosis as his mother and taken to Aimorés, where he has lived ever since, except for a few months when he tried to work in Itápolis. His mother was taken to another hospital and he never saw her again.  It is estimated that nearly 40,000 people have been separated from their families as a result of the isolation strategies adopted as a way to treat Hansen’s disease. The challenge now is to try to reunite families forcibly separated.  Since 2011, a team from the Federal University of Rio Grande do Sul (UFRGS) has been working with Movement for the Reintegration of Hansen’s Disease Patients (MORHAN), an NGO headquartered in Rio de Janeiro, to ensure that family members of those with Hansen’s disease who have gone for long periods without seeing each other or ever meeting are able to get together.

A church and bandstand from the 1950s preserved by the Lauro de Souza Lima Institute in Bauru

Eduardo CesarA church and bandstand from the 1950s preserved by the Lauro de Souza Lima Institute in BauruEduardo Cesar

Hansen’s disease is spread through contact with the nasal secretions, coughs or sneezes of infected persons.  For a long time, all that was known about the disease first identified by Norwegian physician Gerhard Hansen in 1873 was its causative agent, the bacterium Mycobacterium leprae, which affects the nerves and generates whitish or reddish patches on skin.   Once unclear, the treatment today is simple, free and effective, based on sulfone and two other medications:  rifampicin and clofazimine, with no need for compulsory isolation.  However, Brazil ranks second in the world in number of cases of the disease, surpassed only by India.  In 2014, the Ministry of Health recorded 31,064 new cases of the disease.

Small cities
The colony hospitals that were in place from the 1930s to 1980 were small cities, replete with churches, police stations, jails and city halls.  Their inhabitants planted, cooked and engaged in small transactions among themselves using their own currency, known as lazarets, in reference to the first colony hospitals that emerged on San Lazzaro Island, near Venice, Italy in the mid-8th century.  “Once interned, the patients only left the leper colonies if they had medical authorization, which rarely occurred,” says physician Lavínia Schuler-Faccini, a professor at UFRGS and one of the coordinators of the National Institute of Genetic and Populational Medicine (INAGEMP), headquartered in Porto Alegre.

“Most of those who seek us out are children of people with Hansen’s disease wanting to find siblings, since many of their parents are now deceased,” says Artur Custódio, president of MORHAN, which was established in 1981 by former residents of colony hospitals and now serves people who are looking for family members.  The combined work of doctors, historians, anthropologists and sociologists has enabled the teams from Porto Alegre and Rio de Janeiro to reunite 800 people, through visits to old colony hospitals and research into files to verify kinship.  “When the information found in the documents is not enough, we use DNA tests,” explains biologist  Flávia Costa Biondi, a member of the UFRGS team. Parents and children who have reconnected, however, seldom go back to living together.  “Usually the children are unable to recognize them as their fathers or mothers.  The isolation has caused them to become complete strangers,” says Schuler-Faccini. Some stories are dramatic, like that of a man who wanted to find out about his father who had been interned for decades at a leper colony in Acre State.  After a few months, the MORHAN team managed to locate him only to learn that he had died just a few weeks before.

It is estimated that 25,000 children have been orphaned from living parents committed to colony hospitals, mainly in the North and Northeastern regions of Brazil.  The children who were born in the leper colonies or who had no one to live with were taken to prevention centers, which was the name of orphanages for children of parents with Hansen’s disease, sometimes in other cities. “The doctors would tell the women that their children had died in childbirth, when they had really been put up for adoption,” reports Schuler-Faccini.  In 1943, Brazil’s 22 prevention centers held nearly 2,500 children who were later handed over to relatives or strangers willing to raise them.  It was not easy to find people to adopt them because there was fear that the children were contaminated and could transmit the disease.

The record of an attempted escape by one of the residents

Department of Leprosy Prophylaxis Collection The record of an attempted escape by one of the residentsDepartment of Leprosy Prophylaxis Collection

After reviewing nearly 10,000 forms completed by children of individuals isolated in Brazil’s leper colonies, the MORHAN team determined that many adopted children were forced to work, mistreated and scorned because they were children of individuals with Hansen’s disease.  Through these documents, the researchers were also able to identify exit routes for children put up for adoption.  “Many children from northern Minas Gerais State were sent to Italy and, from the south of Pará through   Suriname, to the Netherlands,” says Custódio. In July 2015, the MORHAN team located two brothers in the Netherlands, the children of Brazilians who had Hansen’s disease and are still alive.

The project coordinated by the team from UFRGS and MORHAN found inspiration in Argentina’s search for children and parents who had disappeared during its military government (1967 – 1983). It was estimated that in Argentina at that time, 500 children were born to mothers who had been imprisoned and later disappeared.  In general, they became part of military families and were sometimes registered as biological children of the adoptive parents.  “But there are also cases of babies abandoned at religious institutions or street corners in Buenos Aires,” says anthropologist Claudia Lee Williams Fonseca of the UFRGS team.

Custódio holds that the children — and not just the parents — should be compensated by the Brazilian government, which continued to isolate people with Hansen’s disease until 1986, despite the 1952 signing of an international accord agreeing to stop the compulsory isolation after the discovery of effective treatments for the disease.  During the 1940s, sulfone began to be used for the treatment of Hansen’s disease in Brazil, a practice followed by other countries.  This allowed people to be treated through periodic visits to hospitals rather than requiring isolation.  In 2007, Brazil’s Congress passed a Provisional Measure to grant lifelong pensions to those suffering from the disease who had continued to be isolated up to1986.

Hansen’s disease victims, recently arrived at the Aimorés colony hospital on closed freight cars in the 1930s

Department of Leprosy Prophylaxis Collection Hansen’s disease victims, recently arrived at the Aimorés colony hospital on closed freight cars in the 1930sDepartment of Leprosy Prophylaxis Collection

Brazil adopted a strategy of compulsory isolation to control Hansen’s disease starting in 1924 and it gained force in the 1940s during the Getúlio Vargas administration, with the National Plan to Fight Leprosy, which called for the compulsory isolation of all confirmed cases and the care and education of healthy children of affected individuals.  “Since there was no effective medicine,” says Claudia Fonseca of UFRGS, “isolation of individuals with Hansen’s disease was considered critical, making it more important than treatment itself.”

In the 1920s, people with Hansen’s disease wandered the city streets or stood on the sides of roads hoping for handouts from travelers who avoided them because it was thought that they themselves might become contaminated.  “Victims of the disease lived in complete abandon for decades in Brazil,” says physician Marcos Vilmond, director of the Lauro de Souza Lima Institute, which provides care to nearly 2,000 people every month.  The institute continues to maintain buildings, the church, and the casino, which has been turned into a museum, the cobblestone streets and the tree-filled plazas of the old Aimorés colony hospital.  In São Paulo, the first sanctuary of this type was Santo Ângelo, built in Mogi das Cruzes in 1928.  The archway to the main street carries the phrase “hope is reborn here.”

In 1943, the 41 colony hospitals scattered throughout Brazil were home to 17,000 people who, once interned, had to devise new ways to survive so they would not be undone by the isolation.  “The people, deprived of the basic rights of citizens, were monitored, controlled and governed by specific laws,” says Claudia Fonseca.  The 1940s was a particularly intensive period of fighting the disease, notes Virmond.  People suspected of being infected were reported to the health authorities and persecuted on the streets and in their homes.  Then, they were isolated in colony hospitals. In Aimorés, victims arrested by the health police were transported to the hospital in special rail cars.

In the 1920s, those with Hansen’s disease lived in camps like this one, along the side of the road near Bauru

Department of Leprosy Prophylaxis Collection In the 1920s, those with Hansen’s disease lived in camps like this one, along the side of the road near BauruDepartment of Leprosy Prophylaxis Collection

The rejection of those suffering from Hansen’s disease is nothing new.  The disease is considered to be one of the oldest in the history of man — so much so that for centuries, many dermatological diseases were confused with leprosy.  “There are records in Europe of people burned alive in their homes during the Middle Ages,” says sociologist Glaucia Maricato, of UFRGS.  The appearance of people with the disease, which causes deformities, along with the fear of contagion, caused Europeans to keep the victims in asylums known as leper colonies, or to expel them from cities.  Hansen’s disease, more than any other, was viewed as impure.  From there came the notion that evil was a characteristic embodied by the carriers.  “Men of that time were convinced that the poverty of one’s soul was reflected in the body,” wrote French historian Georges Duby in his book Year 1000 Year 2000: In the Footsteps of our Fears. “The leper, because of the appearance of his body, was a sinner.  He had displeased God so his sin was purged through his pores.”

The medieval view of the disease persisted into the 20th Century, according to historian Yara Nogueira Monteiro of the São Paulo Health Institute.  In an article published in the journal Saúde e Sociedade, she analyzed how the compulsory isolation of people with Hansen’s disease in the state contributed to stigmazation of healthy people.  In general, she notes, the compulsory isolation of a parent brought with it something known as “family fragmentation.”  When news that someone had Hansen’s disease spread, it was quite common for close relatives to lose their jobs and for children to be expelled from schools.  This ripple effect, she says, helped further marginalize victims of the disease.

This is what happened to Nivaldo Mercúrio.  In 1968, cured of the disease, he left the colony hospital and returned to Itápolis where he found a job.  Weeks later, however, Nivaldo’s co-workers demanded that the owner of the company fire him because he had come from a leper colony.  He carried the signs of his past:  his hands had become atrophied and he had trouble speaking as a result of the treatment with chaulmoogra oil, used before sulfone.  “I was fired and a few months later, I came back here,” he says.  The old Aimorés colony hospital is home to 74 people today – people like him who once had Hansen’s disease.

Scientific articles
FONSECA, C. L. W. et al. Project REENCONTRO: ethical aspects of genetic identification in families separated by the compulsory isolation of leprosy patients in Brazil.  Journal of Community Genetics. V. 6, No. 3, p. 215-22. July 2015.
PENCHASZADEH, V. B. & SCHULER-FACCINI, L. Genetics and human rights. Two histories: Restoring genetic identity after forced disappearance and identity suppression in Argentina and after compulsory isolation for leprosy in Brazil. Genetics and Molecular Biology. V. 37, p. 299-304. March 2014.
MONTEIRO, Y. N. Violência e profilaxia: os preventórios paulistas para filhos de portadores de hanseníase. Saúde e Sociedade. V. 7, No. 1, p. 3-26.  1998.