SASAKAWA MEMORIAL HEALTH FOUNDATION
Japanese
Character sizeLargeSmall

WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

FEATURE: The Way Home

Authors hope book will help encourage more family reunions at Sungai Buloh.

I first became interested in Sungai Buloh leprosarium when I made a documentary in 2007 for Malaysian television about the lives of people living there. Established in 1930 near Kuala Lumpur, it used to be one of the biggest leprosy settlements in the world1.

Sungai Buloh is now an ageing community of people affected by leprosy. Many of its residents have spent the bulk of their lives there, after being forcibly isolated following a diagnosis of leprosy.

I was tremendously touched by the stories we filmed. Especially heartrending were the accounts of how the disease split families apart. It is this aspect of the Sungai Buloh story that drew me back to write a book with co-author Joshua Wong.

The Way Home2 documents the lives of people who started families at the leprosarium but could not keep their children because of the rules prohibiting this. It also looks at what happened to the children, who went to live with relatives, were placed in care or given up for adoption. How both sides came to terms with their separation, and whether they have been successful in reconnecting in later life, are also themes of this book.

We interviewed ten people affected by leprosy and eight children about their experiences. Among these are Mak Liew Set and his daughter, Julie. Julie was adopted by an Australian couple and raised in Perth. Through the Internet, she was able to track down information about her parents, who had been confined to a leprosarium in Pulau Jerejek before being transferred to Sungai Buloh.

In October 2006, accompanied by her Australian foster mother, Julie was reunited with her parents at Sungai Buloh. Her story was documented in Loh Kah Seng's book Making and Unmaking the Asylum - Leprosy and Modernity in Singapore and Malaysia.

The account of their reunion affected me deeply. I subsequently contacted Julie, and offered to facilitate communication between her and her father. (By this time her mother had died.) I translated Julie's letters to him and helped him to reply. I was always touched by the way her father would smile when I read Julie's letters. For her part, there are no words to describe her feelings each time she received a letter from her father. She told me she reads them again and again.

photo
Julie (second from left) with her parents and children at Sungai Buloh

SOCIAL STIGMA

The reunion between Julie and her father is one of three such cases we document in the book. I don't know how many more reunions will be possible. In some cases, it is already too late. In others, there is a reluctance on the part of the children to delve into their past and accept their birth parents. Some descendants we approached refused to be featured because of the social stigma.

Occasionally I wake up in a cold sweat in the middle of the night. In my dreams I have seen the tear-stained faces of Sungai Buloh residents I have interviewed. I worry they will not have the chance to see their children again before they leave this world. I wonder too how many children have cried at not being able to find their parents.

Society has failed to recognize that people affected by leprosy are human beings with feelings and emotions. They have had to endure the pain of forced isolation and the trauma of separation from their children. Although cured of the disease, the physical scars it has left and their long-term isolation have made social reintegration and family reunion difficult. If our book encourages more children to seek out their parents and allow them into their lives, we will be happy.

FOOTNOTES

1 Now known as the National Leprosy Control Centre, it was integrated with Sungai Buloh Hospital in 2006. It is to be gazetted as a national heritage site.

2 Publication pending (in Chinese).

photo

AUTHOR: Eannee Tan

Eannee Tan is a free-lance writer and former television journalist. She produced a series of TV reports about the Sungai Buloh leprosarium in Malaysia, including the 2007 documentary, The Everlasting Valley of Hope. She is very keen to document oral histories of people affected by leprosy and their descendents.