{"id":212734,"date":"2016-02-24T19:04:38","date_gmt":"2016-02-24T22:04:38","guid":{"rendered":"http:\/\/revistapesquisa.fapesp.br\/?p=212734"},"modified":"2016-02-24T19:04:38","modified_gmt":"2016-02-24T22:04:38","slug":"violence-fear-and-stigma","status":"publish","type":"post","link":"https:\/\/revistapesquisa.fapesp.br\/en\/violence-fear-and-stigma\/","title":{"rendered":"Violence, fear and stigma"},"content":{"rendered":"
\"At

Eduardo Cesar<\/span>At 88, Nivaldo Merc\u00fario lives at the old Bauru colony hospital, his home since being interned there following a diagnosis of Hansen\u2019s disease at age 17Eduardo Cesar<\/span><\/p><\/div>\n

in Bauru<\/em><\/p>\n

Nivaldo Merc\u00fario was seven years old when a black ambulance bearing the letters DPL, Department of Leprosy Prophylaxis, stopped in front of his farmhouse in It\u00e1polis, in rural S\u00e3o Paulo State. Two doctors got out and asked to examine the entire family.\u00a0 \u201cThey discovered that my mother had Hansen\u2019s disease, what they used to call leprosy, and a few days later they came back to take her away,\u201d he recalls, now 88 as he walks along the streets of the old Aimor\u00e9s colony hospital, now part of the Lauro de Souza Lima Institute in Bauru, one of the main treatment centers for those with Hansen\u2019s disease in the state of S\u00e3o Paulo. \u201cThen the doctors told my father, my siblings and I to get out of the house and they set it on fire.\u201d\u00a0 In 1933, compulsory isolation and burning of houses inhabited by those suffering from Hansen\u2019s 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.<\/p>\n

Ten years later, Nivaldo was given the same diagnosis as his mother and taken to Aimor\u00e9s, where he has lived ever since, except for a few months when he tried to work in It\u00e1polis.\u00a0His mother was taken to another hospital and he never saw her again.\u00a0 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\u2019s disease. The challenge now is to try to reunite families forcibly separated.\u00a0 Since 2011, a team from the Federal University of Rio Grande do Sul (UFRGS) has been working with Movement for the Reintegration of Hansen\u2019s Disease Patients (MORHAN), an NGO headquartered in Rio de Janeiro, to ensure that family members of those with Hansen\u2019s disease who have gone for long periods without seeing each other or ever meeting are able to get together.<\/p>\n

\"A

Eduardo Cesar<\/span>A church and bandstand from the 1950s preserved by the Lauro de Souza Lima Institute in BauruEduardo Cesar<\/span><\/p><\/div>\n

Hansen\u2019s disease is spread through contact with the nasal secretions, coughs or sneezes of infected persons.\u00a0 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<\/em>, which affects the nerves and generates whitish or reddish patches on skin.\u00a0\u00a0 Once unclear, the treatment today is simple, free and effective, based on sulfone and two other medications:\u00a0 rifampicin and clofazimine, with no need for compulsory isolation.\u00a0 However, Brazil ranks second in the world in number of cases of the disease, surpassed only by India.\u00a0 In 2014, the Ministry of Health recorded 31,064 new cases of the disease.<\/p>\n

Small cities<\/strong>
\nThe colony hospitals that were in place from the 1930s to 1980 were small cities, replete with churches, police stations, jails and city halls.\u00a0 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<\/sup> century.\u00a0 \u201cOnce interned, the patients only left the leper colonies if they had medical authorization, which rarely occurred,\u201d says physician Lav\u00ednia 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.<\/p>\n

\u201cMost of those who seek us out are children of people with Hansen\u2019s disease wanting to find siblings, since many of their parents are now deceased,\u201d says Artur Cust\u00f3dio, president of MORHAN, which was established in 1981 by former residents of colony hospitals and now serves people who are looking for family members.\u00a0 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.\u00a0 \u201cWhen the information found in the documents is not enough, we use DNA tests,\u201d explains biologist\u00a0 Fl\u00e1via Costa Biondi, a member of the UFRGS team. Parents and children who have reconnected, however, seldom go back to living together.\u00a0 \u201cUsually the children are unable to recognize them as their fathers or mothers.\u00a0 The isolation has caused them to become complete strangers,\u201d 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.\u00a0 After a few months, the MORHAN team managed to locate him only to learn that he had died just a few weeks before.<\/p>\n

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.\u00a0 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\u2019s disease, sometimes in other cities. \u201cThe doctors would tell the women that their children had died in childbirth, when they had really been put up for adoption,\u201d reports Schuler-Faccini.\u00a0 In 1943, Brazil\u2019s 22 prevention centers held nearly 2,500 children who were later handed over to relatives or strangers willing to raise them.\u00a0 It was not easy to find people to adopt them because there was fear that the children were contaminated and could transmit the disease.<\/p>\n

\"The

Department of Leprosy Prophylaxis Collection <\/span><\/a> The record of an attempted escape by one of the residentsDepartment of Leprosy Prophylaxis Collection <\/span><\/p><\/div>\n

After reviewing nearly 10,000 forms completed by children of individuals isolated in Brazil\u2019s 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\u2019s disease.\u00a0 Through these documents, the researchers were also able to identify exit routes for children put up for adoption.\u00a0 \u201cMany children from northern Minas Gerais State were sent to Italy and, from the south of Par\u00e1 through\u00a0\u00a0 Suriname, to the Netherlands,\u201d says Cust\u00f3dio. In July 2015, the MORHAN team located two brothers in the Netherlands, the children of Brazilians who had Hansen\u2019s disease and are still alive.<\/p>\n

The project coordinated by the team from UFRGS and MORHAN found inspiration in Argentina\u2019s 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.\u00a0 In general, they became part of military families and were sometimes registered as biological children of the adoptive parents.\u00a0 \u201cBut there are also cases of babies abandoned at religious institutions or street corners in Buenos Aires,\u201d says anthropologist Claudia Lee Williams Fonseca of the UFRGS team.<\/p>\n

Cust\u00f3dio holds that the children \u2014 and not just the parents \u2014 should be compensated by the Brazilian government, which continued to isolate people with Hansen\u2019s 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.\u00a0 During the 1940s, sulfone began to be used for the treatment of Hansen\u2019s disease in Brazil, a practice followed by other countries.\u00a0 This allowed people to be treated through periodic visits to hospitals rather than requiring isolation.\u00a0 In 2007, Brazil\u2019s Congress passed a Provisional Measure to grant lifelong pensions to those suffering from the disease who had continued to be isolated up to1986.<\/p>\n

\"Hansen\u2019s

Department of Leprosy Prophylaxis Collection <\/span><\/a> Hansen\u2019s disease victims, recently arrived at the Aimor\u00e9s colony hospital on closed freight cars in the 1930sDepartment of Leprosy Prophylaxis Collection <\/span><\/p><\/div>\n

Isolation<\/strong>
\nBrazil adopted a strategy of compulsory isolation to control Hansen\u2019s disease starting in 1924 and it gained force in the 1940s during the Get\u00falio 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.\u00a0 \u201cSince there was no effective medicine,\u201d says Claudia Fonseca of UFRGS, \u201cisolation of individuals with Hansen\u2019s disease was considered critical, making it more important than treatment itself.\u201d<\/p>\n

In the 1920s, people with Hansen\u2019s 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.\u00a0 \u201cVictims of the disease lived in complete abandon for decades in Brazil,\u201d says physician Marcos Vilmond, director of the Lauro de Souza Lima Institute, which provides care to nearly 2,000 people every month.\u00a0 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 Aimor\u00e9s colony hospital. \u00a0In S\u00e3o Paulo, the first sanctuary of this type was Santo \u00c2ngelo, built in Mogi das Cruzes in 1928.\u00a0 The archway to the main street carries the phrase \u201chope is reborn here.\u201d<\/p>\n

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.\u00a0 \u201cThe people, deprived of the basic rights of citizens, were monitored, controlled and governed by specific laws,\u201d says Claudia Fonseca.\u00a0 The 1940s was a particularly intensive period of fighting the disease, notes Virmond.\u00a0 People suspected of being infected were reported to the health authorities and persecuted on the streets and in their homes.\u00a0 Then, they were isolated in colony hospitals. In Aimor\u00e9s, victims arrested by the health police were transported to the hospital in special rail cars.<\/p>\n

\"In

Department of Leprosy Prophylaxis Collection <\/span><\/a> In the 1920s, those with Hansen\u2019s disease lived in camps like this one, along the side of the road near BauruDepartment of Leprosy Prophylaxis Collection <\/span><\/p><\/div>\n

The rejection of those suffering from Hansen\u2019s disease is nothing new.\u00a0 The disease is considered to be one of the oldest in the history of man \u2014 so much so that for centuries, many dermatological diseases were confused with leprosy.\u00a0 \u201cThere are records in Europe of people burned alive in their homes during the Middle Ages,\u201d says sociologist Glaucia Maricato, of UFRGS.\u00a0 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.\u00a0 Hansen\u2019s disease, more than any other, was viewed as impure.\u00a0 From there came the notion that evil was a characteristic embodied by the carriers.\u00a0 \u201cMen of that time were convinced that the poverty of one\u2019s soul was reflected in the body,\u201d wrote French historian Georges Duby in his book Year 1000 Year 2000: In the Footsteps of our Fears. \u201cThe leper, because of the appearance of his body, was a sinner.\u00a0 He had displeased God so his sin was purged through his pores.\u201d<\/p>\n

The medieval view of the disease persisted into the 20th<\/sup> Century, according to historian Yara Nogueira Monteiro of the S\u00e3o Paulo Health Institute.\u00a0 In an article published in the journal Sa\u00fade e Sociedade<\/em>, she analyzed how the compulsory isolation of people with Hansen\u2019s disease in the state contributed to stigmazation of healthy people.\u00a0 In general, she notes, the compulsory isolation of a parent brought with it something known as \u201cfamily fragmentation.\u201d\u00a0 When news that someone had Hansen\u2019s disease spread, it was quite common for close relatives to lose their jobs and for children to be expelled from schools.\u00a0 This ripple effect, she says, helped further marginalize victims of the disease.<\/p>\n

This is what happened to Nivaldo Merc\u00fario.\u00a0 In 1968,<\/strong> cured of the disease, he left the colony hospital and returned to It\u00e1polis where he found a job.\u00a0 Weeks later, however, Nivaldo\u2019s co-workers demanded that the owner of the company fire him because he had come from a leper colony.\u00a0 He carried the signs of his past:\u00a0 his hands had become atrophied and he had trouble speaking as a result of the treatment with chaulmoogra oil, used before sulfone.\u00a0 \u201cI was fired and a few months later, I came back here,\u201d he says.\u00a0 The old Aimor\u00e9s colony hospital is home to 74 people today \u2013 people like him who once had Hansen\u2019s disease.<\/p>\n

Scientific articles<\/em>
\nFONSECA, C. L. W. et al.<\/em> Project REENCONTRO: ethical aspects of genetic identification in families separated by the compulsory isolation of leprosy patients in Brazil.<\/a>\u00a0 Journal of Community Genetics<\/strong>. V. 6, No. 3, p. 215-22. July 2015.
\nPENCHASZADEH, 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. <\/a>Genetics and Molecular Biology<\/strong>. V. 37, p. 299-304. March 2014.
\nMONTEIRO, Y. N. Viol\u00eancia e profilaxia: os prevent\u00f3rios paulistas para filhos de portadores de hansen\u00edase<\/a>. Sa\u00fade e Sociedade<\/strong>. V. 7, No. 1, p. 3-26.\u00a0 1998.<\/p>\n","protected":false},"excerpt":{"rendered":"Researchers bring families separated by Hansen\u2019s disease back together ","protected":false},"author":346,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[165],"tags":[237,241,247],"coauthors":[662],"class_list":["post-212734","post","type-post","status-publish","format-standard","hentry","category-humanities","tag-genetics","tag-history","tag-medicine"],"acf":[],"_links":{"self":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/posts\/212734","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/users\/346"}],"replies":[{"embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/comments?post=212734"}],"version-history":[{"count":0,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/posts\/212734\/revisions"}],"wp:attachment":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/media?parent=212734"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/categories?post=212734"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/tags?post=212734"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/coauthors?post=212734"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}