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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

REPORT: Beyond Borders

Seoul forum shows that Hansen’s disease heritage resonates around the world.

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Consensus-building: the 2016 World Forum on Hansen’s Disease

The 2016 World Forum on Hansen’s Disease—Shaping (a) Better Future: Historic Significance of Hansen’s Disease Cultural Heritage was held in Seoul, South Korea from November 1 to 3.

Organized by the Korean Federation of Hansen’s Disease Associations (KFHA), the forum had the goal of forming a consensus on the preservation of tangible and intangible Hansen’s disease cultural heritage, fostering international cooperation on alternative uses of former Hansen’s disease facilities, and disseminating a positive message about people affected by the disease.

In 2010, the first World Forum on Hansen’s Disease hosted in the same city traced the journey from isolation to inclusion of persons affected by leprosy. As the current forum revealed, that journey is by no means at an end, but promoting an appreciation of what Hansen’s disease cultural heritage has to offer the world can accelerate progress toward understanding and acceptance.

MILESTONE YEAR

For South Korea, the year 2016 represented a significant historical milestone in Hansen’s disease history as it marked the centennial of the founding of the Sorokdo National Hospital on May 17, 1916. As part of events to observe this anniversary, a Hansen’s disease museum was inaugurated on Sorokdo, designed to preserve a record of the island’s role as a leprosy colony, as well as to serve as a venue for human rights education.

On human rights, the conference heard from representatives of a Korean lawyers’ group, who reviewed the status of lawsuits and legal appeals against the Korean government concerning compensation for those segregated on Sorokdo in the past. Their conclusion: human rights are not totally restored and people affected by the disease still suffer prejudice and discrimination.

Delegates were also treated to a roundtable discussion involving Korean academics, heritage experts and others. Among the topics they examined were what aspects of Hansen’s disease heritage would have value for future generations and how these assets should be utilized. For Professor Donjin Kang of Kyungsung University, the answer was clear: “To prevent repeating a painful history.”

STORIES ARE KEY

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From overseas, delegates from 16 countries gave presentations on museums, places of cultural significance in the history of Hansen’s disease, and efforts to promote these as World Heritage Sites. A number of speakers emphasized that heritage preservation was about more than just objects and buildings.

Huang Yen Hong, curator of the Si’an Hospital Museum of Hansen’s Disease, a small but innovative museum in China, said: “Stories are the soul of the museum. They are the spirits of the objects on display. They make them meaningful and vivid.”

Echoing this was Yasunori Fukuoka, a professor emeritus at Japan’s Saitama University, who has conducted numerous interviews with persons affected by the disease in Japan as part of his research. Over time, he said, he came to the realization that “only the voices and narratives of people affected by Hansen’s disease can give the buildings and properties real meaning as intangible cultural heritage.”

Stories were also woven into the presentations of Valerie Monson, who described the work of an organization that helps descendants of persons affected by Hansen’s disease learn about their ancestors buried at Kalaupapa in Hawaii, and of Kofi Nyarko of IDEA Ghana, who has paved the way for persons living in Hansen’s disease communities to return to their hometowns.

In addition to Korea’s Sorokdo, other important locations in leprosy history were spotlighted during the course of the three days. These included St. George’s Hospital in Bergen, Norway; Spinalonga, the former fortress in Greece that once served as a Hansen’s disease colony; Nagashima Aiseien sanatorium in Japan’s Inland Sea; and Agua de Dios, a former colony in Colombia.

Delegates endorsed the Seoul Declaration, an ambitious document focusing on upholding human rights, eliminating discrimination, and preserving the history of Hansen’s disease—in particular so that those affected are afforded their “rightful place in history.” This forum was evidence that progress is being made, but that there is still much work to be done.