HOME IS WHERE THE HEART IS

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HOME IS WHERE THE HEART IS

DAEGU, North Gyeongsang

Mount Palgong, whose rock is believed to grant one wish to every visitor, is not only a tourist attraction, but also the home of Jinin Village for the disabled.

Seo Jeong-hee, 53, runs the home for 13 seriously disabled adults, as the head of the Together Welfare Foundation. In two white buildings, all 13 live under Ms. Seo's care. Residents are over 18 years old, but all are handicapped seriously enough that they must rely on Ms. Seo's help.

Ms. Seo, who has earned the moniker "Godmother of the Disabled," is herself the mother of a 28-year-old son with cerebral palsy.

Everything once looked just right for Ms. Seo. She was born into a well-to-do family, into a life with few serious difficulties. After majoring in fashion, Ms. Seo tied the knot with Gwon Gi-hong, now a professor of economics at Yeungnam University, near Daegu. Happily married, the couple had a son, Sun-uk, the following year. But six months after his birth, Sun-uk suffered from a high fever. He was quickly treated by a doctor and seemed to recover. A few months later, Ms. Seo went with her husband and their son to Germany, where Mr. Gwon was to study economics at the University of Freiburg. It was a small but picturesque community, looking much as it did when it was built in the Middle Ages. She was all too happy and never dreamed of any misfortune.

"One evening, friends of my husband had a get-together at our place for dinner. One of them, a physician from Korea, wanted to talk to us in private."

"Please don't be offended by this," the doctor began, "but it seems to me your son is acting strange."

Ms. Seo was alarmed. Sun-uk, a year old at the time, was a bit slow, she knew, but otherwise he seemed O.K. This was April 22, 1975. Sun-uk had passed a physical examination not long after he came to Germany. But now, feeling uneasy, Ms. Seo took her son to see a doctor. After some testing, she was devastated to learn that a virus had infected her son's brain. She held out hope that it could get better through some kind of treatment. "At first I had hope," she said, "but as time went by, I could clearly see the difference between Sun-uk and the other kids his age. He stopped growing at the crawling stage."

Despair started to overwhelm her. Whenever she caught sight of healthy, energetic boys playing and clowning around, she felt like climbing into a deep hole. She insisted to herself that her son would get better, and she started to wander about Europe, looking for skilled specialists in France, England, Austria, anywhere. In desperation, she even let Sun-uk be subjected to experimental research by a team dealing with abnormal dribbling cases associated with cerebral palsy.

But nothing did any good. Meanwhile, she and her husband began to be heavily pressured by their families to have a second child. "My husband asked me, 'What if the second child takes away all the affection that Sun-uk deserves?'" she said, about to cry. But there was no way to go against the wishes of the elders in their families, and they had a second son. That son was born healthy and has gone on to major in medical science at university.

The family returned to Korea in late 1984. Her husband settled down as a university professor, but nothing improved for their son. If anything, he got worse -- his right arm and leg became paralyzed, forcing the boy to use a wheelchair, which he does to this day. The following year, Sun-uk went to a special school for the disabled, but Ms. Seo said that the facilities were worse than horrible. "The toilets at the school were not designed for the disabled, so urine was all over the toilet floor," she recalled.

In Germany, she said, Sun-uk always received special treatment. Doctors were always ready for him, no matter how busy they were. Whenever Sun-uk went to a hospital, Ms. Seo did not have to pay, and the local government provided them with transportation money. Sun-uk even received government-paid horse-riding sessions as treatment.

Not long after Ms. Seo and her husband returned, they realized others here in Korea had things much worse. A fellow parent, who was desperate for money for his child's treatment, went over to them one day and asked, "Should I sell my internal organs for 30 million won [$25,000] and give the money and my child to a temple? Or should I just commit suicide, killing my child at the same time?"

"I found out that there are so many disabled people in this country who can't get the proper treatment because they don't have money," she said. The moment made Ms. Seo realize the destiny of so many parents of the disabled -- they cannot even die for their children. "Let's do something for us, for them," she thought.

So she had a small meeting with family and friends, seeking to raise funds for the disabled. She asked for 2,000 won monthly as a membership fee and took further contributions. By 1986, her bank account reached 50 million won. It was by no means a small amount of money, but it was still not enough to establish a welfare facility. People told her that she would need 500 million won to build a decent facility. She ended up just buying some small tracts of land in Daegu for the future.

Then one day she got a phone call from a real estate agent in Daegu, saying the land that Ms. Seo had purchased had jumped in value to 300 million won.

Ms. Seo sold the land and with the money and her private property she managed to gather 500 million won. In 1997, Ms. Seo along with her husband started the Together Welfare Foundation.

The following year, they opened a facility for the disabled and a place where the disabled could do some simple tasks together. These days, about 50 disabled people relish the happiness of working.

"They get only 30,000 to 50,000 won a month, but it makes them exceedingly happy, which makes me happy, too," she said.

Ms. Seo enlarged the facility and this year opened Jinin Village on Oct. 19. The village can manage 52 disabled people with a staff of 11 nurses, therapist assistants and welfare experts.

Ms. Seo made sure that the village had decent facilities, including consulting rooms, barbershop, bedrooms and a physiotherapy center.

The village gets support from the national government and the Daegu city government, and it gives limits to the residents' qualification. To be a resident, one should be either from outside of Daegu city or from a extremely poor family.

On day last week, Ms. Seo went through a typical day with her 13 disabled residents. She took care of them -- making porridge for those with digestion problems and helping others use the toilet.

One resident, Kim Sin-hye, 18, had her hands covered because she used to scratch her own face and body with her nails. Kim Hee-young, 21, one of the staff members, said with a bright smile, "Well, this kind of difficulty is not something totally unexpected. All of us will be blessed in the end for helping them out."

Ms. Seo said she has financial problems running the facility, although she gets support from the Daegu city government and her friends from Gyeongbuk Girls High School. She needs at least 1 million won a month just for diapers, but the money she gets from support groups is less than 2 million won.

Ms. Seo says she often gets overwhelmed by grief. "They don't know where they're from or who their parents are," she says. "Thinking about the kind of lives they're leading, I just can't help crying.

"Parents of the disabled dream of only one thing. Dying the same day as their children."

by Hong Gweon-sam

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