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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

REPORT: Heritage Matters

A Tokyo workshop focuses on the importance of preserving leprosy history and heritage.

The first international workshop on preserving leprosy history and heritage was held in Tokyo on October 24 and 25, aiming to encourage networking among leprosy museums, archives and heritage sites in different parts of the world. Jointly organized by the Sasakawa Memorial Health Foundation (SMHF) and Japan's National Hansen's Disease Museum, the two-day event drew participants from Brazil, Malaysia, Portugal, the Philippines, Australia and Taiwan.

With leprosy fading from public memory, records disappearing and heritage sites under pressure from developers, SMHF's Kay Yamaguchi injected a note of urgency into the proceedings, suggesting there was a "last chance" to take action to preserve leprosy history and place these efforts on an international footing.*

The need to move quickly also stems from the diminishing number of people who were subject to past policies of isolation and exclusion. Three elderly gentlemen with personal experience of segregation - two from Japan, one from Brazil - attended the workshop. Their contributions underlined the importance of involving such "primary stakeholders" in discussions on how their history should be preserved and represented.

Three delegates from Malaysia


With heritage preservation at different stages in different countries, discussions focused on how experiences could be shared to mutual advantage. Japan has a national leprosy museum - a manifestation of the state's apology for its mistaken policies of the past - but its founders and curators acknowledge its shortcomings and look to others to help make it more international in scope. Brazil does not have an equivalent museum, but there are plans to build one by MORHAN, the Movement for the Reintegration of Persons Affected by Hansen's Disease, which noted the important role Japan's national museum and its predecessor have played in the struggle for human rights.

In the Philippines, a museum and archives on leprosy were established in 2006 on Culion, once the site of world's largest leprosy colony. But as the island's economy develops, some of its historic buildings are under threat. "We have to find a way of preserving the past while taking account of the needs of the future," said Dr. Arturo C. Cunanan.

One solution was put forward by Dr. Lim Yong Long, who is closely involved in efforts to preserve what remains of the Sungai Buloh leprosarium complex in Malaysia. "Architectural planning and design can solve the problem of how to balance the desire to preserve the past and the needs of the future," he said.

The adaptive reuse of sites such as Sungai Buloh was one of the recommendations drawn up by participants, who stressed the need to "actively and sensitively preserve and adapt these sites in innovative ways that retain their identity and integrity."

Group portrait in front of the National Hansen's Disease Museum


Participants also agreed on the need to encourage and support the efforts of networks of people affected by leprosy, local and national advocacy groups, NGOs and scholars to talk to and collaborate with relevant governmental entities so that comprehensive plans for the preservation of leprosy history and heritage are furthered.

Two experts from the Philippines, Dr. Maria Serena I. Diokno of the National Historical Commission and Victorino Mapa Manalo of the National Archives, brought fresh perspectives to the topic and made some practical suggestions. One outcome of the workshop is that the commission will undertake preparatory research to install a historical marker on Culion.

Following the two days of discussions in Tokyo, delegates traveled to western Japan, where they visited Nagashima Aiseien, a leprosy sanatorium located on an island in the Inland Sea, and toured the museum there. They also took part in a public symposium on leprosy history in the nearby city of Okayama.


* For another initiative to promote the cultural heritage of leprosy/Hansen's disease historic sites, visit the International Coalition of Historic Sites of Exclusion and Resistance