Who Goodwill Ambassador's Newsletter

WHO GOODWILL AMBASSADOR’S NEWSLETTER December 2010 • Number 47 For the • Leprosy is curable EliminationOF • Free treatment is available Leprosy • Social discrimination has no place Yohei Sasakawa listens to community leaders at Sungai Buloh leprosy treatment center in Malaysia, when he visited in November. MESSAGE CONTENTS Preserving Our Heritage Message 1 Report In the previous issue, I wrote of my visit to if they so desire. I hope all governments will 2010 World Forum on Bergen in Norway, where I visited Dr. Hansen’s come to respect this point. Hansen’s Disease 2 study, the leprosy museum and the national The history of this disease is also the history Feature archives. I told of how carefully the history of of an assault on human dignity and human Daytrip to Sorokdo 3 leprosy, and the memories of those affected by rights resulting from discrimination. People the disease, have been preserved. with leprosy were targeted for exclusion, and Interview Now that leprosy is a receding threat, I forced to live an isolated existence. Countless Artur Custodio M. de believe we have an important responsibility to millions, guilty of no crime, were shunned by Sousa, MORHAN 4 preserve the history of a disease that blighted society. This is an enormous negative legacy. Column so many lives and pass on this memory to This discrimination is not a thing of the past. Leprosy in the News 5 future generations. Today, in the name of It is part of our history, which we are creating Ambassador’s Journal development, hospitals, sanatoriums, homes day by day. It is an error that we must strive Vietnam, Palau, and other buildings related to leprosy are being to ensure that future generations do not forget. Malaysia 5 torn down. Long-term residents are being given That is why we must pass on the memory of no option but to move. This is happening in what people affected by leprosy endured, as News Leprosy and Human Taiwan, in Brazil, in Malaysia — all over the well as their courageous struggle against stigma Dignity Program, world, in fact — and concerns me greatly. and exclusion. HANDA, Global In the Principles and Guidelines recently I believe the historical heritage of leprosy is Appeal 8 endorsed by the UN Human Rights Council — on a par with UNESCO world heritage. Therefore, a long-held dream of mine — there is a clause I appeal to all concerned not to allow this From the Editors 8 which states that governments should allow important heritage to be lost. people to continue to live in the leprosariums and sanatoriums that have become their homes, — Yohei Sasakawa, WHO Goodwill Ambassador 1 REPORT FROM INDIA FTEL Dec 10 • No. 47 From Seoul to the World International gathering showcases Korea’s experience of Hansen’s disease. “Isolation to and raising societal awareness of the disease, Integration” was the forum was an opportunity to showcase the the theme of an progress South Korea has made in these areas, international forum particularly in the last decade. But it also aired on Hansen’s disease some of the outstanding issues that remain — held in Seoul, issues that resonate not only in South Korea South Korea, from but also in other countries with a history of the November 24 to 26, disease. 2010. Over 1,000 Accordingly, plenary sessions covered topics delegates from 17 ranging from health-related human rights, Hansen’s countries took part disease and rehabilitation strategies, the role of in the event, which media, and history and memory. issued the 12-point National Assembly Member Choon-Jin Kim Seoul Declaration noted that the government has an obligation to calling for an end to all forms of discrimination protect the health of its citizens but that it fails against people affected by leprosy. to do so in some cases. When that happens, The opening ceremony, which included people must demand this as a fundamental a video message from UN Secretary General human right. “This is a role for people affected Ki-Moon Ban, was held against the backdrop of by Hansen’s disease,” he said. an artillery attack by North Korea on a South Korean island the previous day. Notwithstanding ROLE MODEL this national emergency, eight National Sang-Kwon Jung, president of IDEA International, Assembly members, a provincial governor and a spoke on the movement for economic former prime minister were in attendance. Their advancement within Korea’s resettlement villages, presence underlined the political support the offering this as a model for other countries to issue of Hansen’s disease now receives in Korea. follow. From raising pigs and poultry, residents Minister of Health and Welfare Soo-Hee advanced to factory ownership. Through Chin noted that people affected by leprosy economic self-independence comes greater social in Korea had suffered not only from the participation, he said. disease itself but also from social prejudice, Dr. Kyu-Ok Kim of Ajou University’s Lifelong discrimination, segregation and violence. Thanks Learning Center described an educational project to the enactment of a special law on Hansen’s to turn a resettlement village into “a place of disease and improved welfare policies, prejudice happiness and hope.” One of the outcomes was and discrimination were diminishing, she said, the confidence to call for better public transport. but much work still needed to be done. “We are citizens. We demand a bus stop,” she South Korea ended the compulsory segregation quoted residents as saying. “They found their of people affected by leprosy in 1963, setting up human rights.” “resettlement villages” around the country for Yoon-Hyung Gil, a reporter for Hankyoreh people to move into. Many of these were in remote newspaper, noted that while coverage of Hansen’s locations and met with opposition from surrounding disease in the Korean media has improved, there communities. There are 89 recovery villages today, was a tendency for articles to treat persons and 13,734 people affected by Hansen’s disease are affected by the disease as secondary to the story said to be living in South Korea. of who was visiting them or doing something for Organized by the Hanvit Welfare Organization, them. “You are the minority of minorities,” he a nonprofit corporation dedicated to promoting told people affected by Hansen’s disease in the the rehabilitation of persons affected by leprosy audience. “You have to speak out.” Interviewed later, Gil-Yong Lee, the president of Hanvit Welfare Association, said that one of the goals of holding the World Forum had been to show the Korean public and the world at large that people affected by Hansen’s disease are capable of organizing a major conference such as this. “In Korea, we have achieved a degree of self-reliance by dint of our own efforts and some outside help,” he said. “We want to export this ‘can-do’ spirit to People affected by Hansen’s disease at the World Forum the world.” ■ 2 FTEL Dec 10 • No. 47 REPORT FROMFEATURE INDIA The Old and the New Korea’s Sorokdo National Hospital gets a facelift, but preserves its historical sites It’s a six-hour drive to reach Sorokdo National There is also Hospital from Seoul, but no longer does the last leg the old operating of the journey involve a boat ride. Three years ago, theatre, where a bridge linking Sorok Island with the mainland experimental was completed, ending the physical and symbolic autopsies were isolation of this one-time leprosy colony off the carried out on southwest corner of the Korean Peninsula. The the patients, and bridge is just one of the signs of change taking place where men were on the island, as the hospital moves ahead with forced to undergo a program of rebuilding and renewal ahead of its The barred windows of vasectomies. 100th anniversary in 2016. Sorokdo’s former prison Another message written in blood expressed sorrow at being unable to have children. Apparently, Sorok’s residents used to pray they would die on a Sunday — the only day that autopsies were not performed — so that their bodies would spared this final indignity and be taken straight to the crematorium. Such autopsies continued to be performed up until the 1980s. In a landscaped garden, a stone monument marks the spot where in 1940 a notorious Japanese hospital director erected a statue of himself. A photograph The island’s association with leprosy dates shows patients being forced to bow before it. Two back to the Japanese occupation of the Korean years later, the director was stabbed to death by a Peninsula (1910-1945), when the authorities set disgruntled patient. up a leprosy clinic on Sorok in 1916. During the 1930s, facilities were expanded and Sorok Island became the destination for every individual on the peninsula diagnosed with leprosy. The segregation policy remained in place beyond the end of Japanese colonial rule, coming to an end only in 1963. At its peak, the island was home to as many as 6,000 persons affected by Hansen’s disease. Today that population numbers a little over 600, some bedridden and permanently hospitalized, and others living in one of seven small villages on the island. The average age of residents is 73. On a recent visit, around 30 delegates to the World Hansen’s Disease Forum toured the main hospital and some of the island’s historical landmarks. Those with previous experience of Dr. Oh stands next to the autopsy table. Sorok were visibly surprised at the extent of the changes they saw. As outlined at the forum by the Dr. Dong-Chan Oh, the hospital dentist who hospital’s director, Dr.

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