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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

SYMPOSIUM: Where Do We Go From Here?

The conversation continues on the merits of preserving leprosy heritage.

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Looking to the future: participants at the 5th international symposium

The 5th International Symposium on Leprosy as Heritage of Humanity was held in the Japanese city of Setouchi, Okayama Prefecture from April 22 to 24.

Organized by Sasakawa Memorial Health Foundation and co-hosted by the western Japan municipality, it drew participants from 16 countries to discuss the progress of efforts to preserve leprosy history in different parts of the world and to explore ways of securing this legacy for future generations, including possible World Heritage listing.

Shinji Nakao, who is head of the residents’ association of National Sanatorium Nagashima Aiseien, one of three Japanese sanatoria working on a joint bid for World Heritage registration, spoke for those at the heart of this history when he said: “The significance (of this history) lies in the fact that people were not treated as human beings. We want to ensure that this does not happen to others.” Now in his eighties, Nakao has spent 69 years in the sanatorium, where he was sent under Japan’s Leprosy Prevention Law at the age of 13.

Like Nakao, Chor Seng Lee is another who saw his freedoms curtailed by government policy against the disease. He is the vice president of Sungai Buloh Settlement Council, an association of residents of the former Sungai Buloh leprosarium in Malaysia, where persons diagnosed with leprosy were sent to prevent the disease from spreading. “We suffered a lot in the past…. I hope people will remember our contribution to the country,” he said.

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Chor Seng Lee (right) and Eannee Tan speak about Sungai Buloh.

Heritage expert Deirdre Prins-Solani of South Africa provided a further reason for preserving this painful heritage. “Those of us who are complicit have been harmed, too. Cultural heritage can be a catalyst for healing and teach us how to be more humane,” she said.

NO TIME TO WASTE

The words of Nakao and Lee, elderly gentlemen linked by a shared history of isolation and exclusion, underscored why a sense of urgency is required. The generation that can talk about these experiences is dying off. Getting down all the facets of their stories before it is too late is essential. “We need to do this while people are still here,” said Anwei Law, international coordinator of IDEA. “We need to make their history part of the permanent history of the world.”

The sense of urgency extends also to physical locations and how they are preserved, with criteria such as authenticity and integrity essential to a successful World Heritage application. The Sungai Buloh settlement lost 25% of its area in 2007 to redevelopment, and pressures to repurpose and redevelop locations associated with leprosy as resident populations decline are widespread.

From Brazil, Artur Custodio of MORHAN underlined the important role that civil society has to play in preserving leprosy history. Speaking of the fate of Brazil’s 28 remaining hospital colonies from a heritage standpoint, he said, “The government takes the decisions, so civil society must shape those decisions through action.”

The stance of the government is important, too, for possible World Heritage or Memory of the World listing, as it is the government that submits the application to UNESCO.

With the application process both lengthy and complex, participants debated whether hopes of getting registered are realistic for some leprosy-related sites, and whether a transnational approach should be adopted.

At the same time, many could see how preparing the groundwork had merit in its own right as a tool of heritage preservation, whether or not an application was accepted or even submitted.

“It helps sites develop plans and push for legislative change to protect them,” Prins-Solani said. “It’s a useful process.”