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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

FEATURE: Reconnecting with the Past

People are returning to Culion in search of their roots - and shedding tears as they do.

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During the first week of May, a festival of homecoming marked the 105th anniversary of the founding of a leprosy colony on the island of Culion in the Philippines. The celebrations included the launch of a new book dedicated to the pioneering health workers and to the early "colonists" - the leprosy patients sent to Culion to segregate them from the rest of the population.

The launch of Culion was attended by many sectors of the community, including descendants of those early health workers and colonists who had returned for the occasion from the United States, Canada, Australia, the Middle East as well as elsewhere in the Philippines. All were happy with the book, since it was the first to be authored by people from Culion itself. They feel it tells the real story of the colony, their roots and their identity.

A few days after the launch, three brothers and sisters in their mid-60s and early 70s visited. They had been born on Culion and spent their first years here, but had few memories of those days. Each now lives overseas: one in the United States, one in Indonesia and one in Australia.

Their grandparents, originally from the northern Philippines, met on Culion, where they had been sent with leprosy. Their mother was born here, placed in a nursery and later sent to Welfareville, a home in Manila for disadvantaged children, including children of leprous parents. She returned to Culion in 1944 and married an engineer.

The new book was a big help to the three siblings in learning about their roots and identity. Digging through the files at the Culion Museum and Archives, we found photos and records of their grandparents on their mother's side, and of other relatives sent to Culion. They were in tears seeing the documents, reading about Welfareville and the colony, and hearing stories of what their grandparents and parents had been through.

SEARCH FOR IDENTITY

I have seen many people cry as they look at photos of lost relatives and loved ones. There is increasing interest in reconnecting with the past. The Culion Museum and Archives, a related website and now the new book are helping people to fill in the gaps in their lives, renew family ties and discover their roots and identity.

One aspect of this process that touches me deeply is the interest that older people have in finding the answer to why they had the experiences they had as children, when others their own age didn't. Specifically, why did they suffer isolation, segregation and even humiliation, because they were the children of parents with leprosy, even though they themselves were disease free?

If it was inhumane and unwarranted to segregate people with leprosy on an island, then how much more so was it to take their children at birth and later institutionalize them at Welfareville? The negative social impact of this policy - the deprivation of parental love, the undermining of self-worth and self-confidence, the feeling of being "different" - has haunted these descendants into old age.

OVERLOOKED ISSUE

This is an important subject that has gone unremarked for many years because the focus has been on the people with leprosy. When I think of people affected by leprosy, however, I include not only those who contracted the disease, but also immediate family members who experienced the social, psychological and economic - but not the medical - consequences.

Such experiences are to be found in many part of the world, especially where structured colonies or sanitaria existed. For these people who have remained silent and have chosen not to be identified or allude to their past, sharing their experiences can be a catharsis.

At the recent 105th anniversary festivities, I met a lady from Hawaii who grew up in Welfareville and was very interested in meeting her peers and learning their stories. I have been able to compile a list of children who were sent to Welfareville. Unfortunately, a significant number are now dead.

I am now planning to organize a get-together of the remaining individuals - about 70 in number - so they can get to know each other and share their experiences. Meanwhile, I continue to research this subject and build up more information on this missing link in Philippine leprosy history. I would like to record the oral histories of all these individuals. As they are getting on in years, however, I know that time is not on our side.

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AUTHOR: Dr. Arturo C. Cunanan

Dr. Arturo C. Cunanan is director of the Culion Sanitarium & General Hospital, and head of the Culion Leprosy Control and Rehabilitation Program. He spearheaded the establishment of the Culion Museum and Archives and is a coauthor of Culion.