Rosita Harum said it was “the most precious moment” of her life when she was reunited with her father, a former leprosy patient, after they were separated for 61 years by a Malaysian policy that quarantined people with the disease.
Born to ethnic Chinese parents, Harum, 66, was adopted by a Muslim couple. After her foster parents died, she embarked on a search for her biological parents during which she found that both had developed leprosy.
Two years later she met her biological father, who was 95, with the help of a nonprofit support group for leprosy patients. He died not too long after.
But Harum is something of an exception as many leprosy patients from around the world who were similarly reunited with kin have had less positive experiences.
The isolation regime in Malaysia and many other countries lingered for decades even after leprosy, also known as Hansen’s disease, was found treatable with a drug introduced in the 1940s. It was also found to be less contagious than had long been thought. Malaysia stopped forcibly quarantining leprosy patients in 1969.
In many countries, children were separated from parents with leprosy soon after birth and raised by nuns at orphanages or adopted.
At a symposium in Japan, where a law to compensate families of such patients was enacted in November, people from five countries shared their experiences with harsh discrimination and voiced hope that stigmas can be overcome.
In Japan, leprosy patients were forcibly confined in sanatoriums across the country under the Leprosy Prevention Law, which lasted nearly 90 years until it was repealed in 1996. A month after a May 2001 court ruling found the government’s segregation policy unconstitutional, Japan enacted a law to compensate the former patients.
Hwang Gwang Nam, a 64-year-old ethnic Korean resident of Japan who played a key role in a 2016 lawsuit seeking state compensation for patients’ family members, says the latest legislation will be significant if it helps them mend long-strained ties.
He was sent to an orphanage in 1956 when he was 1 after his leprosy-infected parents and sisters were confined to a sanatorium in western Japan. After eight years apart, his cured parents came to the facility to pick him up so they could re-start their lives together, but he was conflicted because he had completely lost touch with them.
“I just thought, ‘Why do I have to live with these people?’ when I met my parents, because I could not remember them,” he said at the symposium in Tokyo hosted by the National Hansen’s Disease Museum.
Elson Diaz, a 37-year-old son of Brazilian leprosy patients, said he was “certainly encouraged” by Japan’s legislation. He is a member of Morhan, a nonprofit group that supports people affected by the disease.
Children of leprosy patients in Brazil sued the federal government in 2017, seeking damages for those who were forced to live apart from their parents under Brazil’s segregation policy, which lasted until the late 1980s, Diaz said.
“After the federal law produced the separation of thousands of families, there was (no) proper treatment,” Diaz added.
Besides Japan, the nations represented by those who spoke at the symposium — Brazil, Portugal, Malaysia and the Philippines — have not drafted legislative measures to provide redress to relatives of leprosy patients, even though the Brazilian government did so for former patients.
Fatima Alves of Portugal said she eventually had to fend for herself after being separated immediately after birth.
“I was sprayed with cold water in a shower room at an orphanage for punishment for playing pranks,” Alves, 57, recounted.
At age 13, she was forced to work for a living when she was kicked out of the leprosy colony. She took a job as a maid at her aunt’s house.
Portugal ended its quarantine policy in 1976.
“I was deprived of all rights as a child. I just want one word of apology from the government,” she said.
At the end of the two-day meeting, Hwang, the man from Japan, concluded by explaining a lesson he learned from his experiences.
“Each of you must have the courage to raise your voice when you feel something is strange, whatever the authorities say,” he said.
“This is not only for the case of Hansen’s disease, but possibly applies to all matters in the society.”