By Steve Kuack

Imagine society pushing you away from family and friends by forcing you to live in confined isolation on a remote island separated from the general public.

All this because you had the innocent misfortune of contracting a misunderstood disease people have ignorantly stigmatized for millennia.

Similar to numerous situations in many countries around the world, Koreans affected by Hansen’s Disease (once commonly known as leprosy) were unwillingly segregated and required to move to Sorok Island.

Away from loved ones for years due to society’s prejudice, these people form special bonds amongst themselves and their newfound family ties do not follow bloodlines.

With May being the ``Family Month’’ in Korea, it is fitting that people affected by Hansen’s Disease and other individuals involved with this cause are celebrating their relationship as one common family.

Today (May 17), the nation marks the ``Day for Those Affected by Hansen’s Disease in Korea.’’ It is an annual event in which thousands of people congregate on Sorok Island not to mark their difference from society, but to recognize their sameness.

People who have been affected by Hansen’s Disease have a likeness in the sense that they have lived in society and experienced being mostly rejected by others both close and distant to them.


Lim Doo-sung, right, president of the Hanvit Welfare Association, talks about his experiences as a former Hansen’s Disease patient during a recent interview at his office in Tangsan-dong, Seoul. At left is the writer, Steve Kuack.


One such man is Lim Doo-sung who has overcome odds forced upon him by the public and has lived a life full of accomplishments.
Born in 1949, it was when he was an elementary school student that he first noticed what appeared to be a very mild skin irritation.

This area became numb before also spreading to other parts of his body.

Obviously growing more curious and concerned, he eventually visited a hospital for what he thought would be just a fairly routine visit to receive minor treatment for a skin ailment.

Although doctors did not initially diagnose it as Hansen’s Disease, another person at the hospital recognized the symptoms and this realization changed Lim’s life forever.

When he told his mother the situation, they both knew he had to go to Sorok National Hospital (SNH) and she instructed him to leave without telling anyone or it would risk the whole family becoming outcasts in their own community.

He knew very little about the disease, but he was aware of the dreaded stigma and prejudicial hate that people attach to it. However, not until arriving at the pier for the ferry to Sorok Island did it hit him that people would unjustly treat him as a second-class citizen.

Staff at the pier changed their tone upon realizing he was a patient and spoke in a blunt manner and segregated him from other passengers in a derogatory manner. It was the first, but certainly not the last time he would be ill-treated.

Not knowing what awaited him when he arrived on the island’s shore, he feared the unknown and the unexpected. Unlike the hospital’s foreign doctors, Korean doctors refused to touch his skin when they were testing him.

Instead, needles as well as stick-type instruments were used to check if parts of his body were sensitive or numb. To further distance themselves from contact with patients, hospital staff instructed patients themselves to draw blood from others when such tests were necessary.

Instead of resting for a faster recovery, patients were forced to work _ in road reconstruction or unloading food from ships _ for no pay on the basis that their treatment was sufficient compensation.

When not working, he was virtually limited to spending time with a dozen people in a cramped and dirty room. The medication showed steady results and after two years he was completely cured.

However, he was still forced to stay there on the false pretense that there were traces of the disease in his blood, but this was likely an excuse to keep him on the island to work.

Faced with bleak futures and limited options for change, some patients rejected the work while others attempted to escape. If they were caught then their punishment was confinement to a prison-like cell.

A large majority of people affected by Hansen’s Disease

who tried to escape drowned, so Lim thought his chances would be better by discreetly paying some fishermen to return with their boats under the cover of darkness to aid his chance for freedom.

He then missed the daily roll call and was re-captured by police who were informed by the hospital of his actions.

Although patients have a bond toward each other and mostly united against the authorities, some strong patients were hired to beat Lim nearly to death as punishment for his desperate attempt to return to normal society. Therefore, the authorities would be absolved of any responsibility.

His second attempt was successful and he returned to his hometown, but his medical history quickly spread to others.

His mother told him to settle in another place because if he stayed then the people would continually shun the family and he should not be a burden on them.

After escaping from Sorok Island, now he was sadly forced to flee from his family and hometown.

With basically nowhere to go, he moved to Kyungchon Resettlement Village. Similar to Sorok Island, these places are still segregated from local communities.

Further, SNH provided more food but no freedom; however, the resettlement village provided more freedom but no food.

His condition meant the government did not provide opportunities for education and the public did not hire people affected by Hansen’s Disease. Like other former patients he was forced to beg.

They felt there was no hope for a brighter future and they wanted to earn money in a more dignified manner. In this regard these people started raising livestock, but still faced difficult obstacles because the public did not buy items associated with wrongfully bad images of Hansen’s Disease.

After hiring ``regular people’’ to sell their goods to others, Lim was elected as their director in the Joint Livestock Association due to his notable business acumen.

His idea was to contact feed factories and propose to buy from them in return for them selling what the former patients had produced.

Just from the end of the 1970s to the mid-1980s, these people earned money in a respected manner while capturing an impressive 25 percent of the domestic egg market. Clearly, a significant accomplishment, which provided a self-reliant, improved economic status.

The Kyungchon village closed because the nearby city had expanded to surround the edge of it and other local residents were uncomfortable with such proximity. At the new Goeun Resettlement Village, Lim’s leadership skills remained evident and he became the village president. He now serves as president of the Hanvit Welfare Association, Korea’s only non-government organization dedicated to representing those affected by Hansen’s Disease by attempting to advance their rights.

Although people might think Lim’s successful accomplishments reflect that integration and normalcy in society is gradually improving, complete normalcy is still vastly inadequate.

For example, if people have signs that they were affected by Hansen’s Disease then they are regularly forced out of public saunas, neglected at hospitals, refused haircuts and disregarded by supposed friends.

Even now he feels like a fugitive running away from his past medical condition to the point that he and his family never mention it to their neighbors or classmates and others.

Little did he know that a small skin irritation would dramatically grow into something that would fundamentally alter his life.

Lim rightfully emphasizes that people affected by Hansen’s Disease have been cured just like people cured from other diseases.

A painful thing is that these people feel society forces them to wear intangible masks about their past condition. Governments must educate people by revealing the truthful facts about the disease so these people can shed their intangible masks that shield them from a repressive society.

As they mark their sameness as one unique family, they should be able to live normally and be treated respectfully like others in society.