[Column] An account of life in an institution for the disabled

Kim Jin-seok lives in the outside world after 29 years in an institution of the disabled. (provided by photographer Jeong Taek-yong)

One man’s story forces us to question how we treat the frail

Kim Jin-seok lives in the outside world after 29 years in an institution of the disabled. (provided by photographer Jeong Taek-yong)

“I just figured that if I went to sleep, the next day would be different. Ten years and then twenty years passed that way, and eventually I just gave up,” the man said.

I had cautiously asked Kim Jin-seok, 52, what it was like to spend 29 years in an institution for the disabled. At the age of 20, Kim was admitted to an institution for those with serious disabilities. During the six years of elementary school, Kim’s mother had carried him to and from school on her back, but once he was an adult, she couldn’t take care of him anymore. Given Kim’s type-one brain lesions, the institution hardly ever let him outside, on the grounds that the neighbors didn’t like it.

He had only been to his family’s house one time, seven years ago. From morning until evening, he had a job in a workplace at the institution where he polished locks while iron filings floated in the air, and then he would go to bed in a dormitory in the same building. Every day was the same, with 10 people in each dorm room, going to bed and getting up at the same time and being bathed by someone, whether they wanted it or not.

After Kim said he had given up, the words hung in the air for a long time. Over time, a lifestyle that restricts your bodily freedom gradually causes you to forget what you want. What was it that made Kim give up?

Kim is slow to respond. It takes him a long time to think, and when thinking is a struggle, a bashful smile dawns on his broad face. For those without disabilities, it can be difficult and even frustrating to understand him. But the reason he is slower than me doesn’t make his burden lighter than mine.

Since being discharged from the institution in 2015, Kim has been getting by on the basic living allowance and disability pension in an apartment provided by the city of Seoul for seven years. The balance in his bankbook is modest, but it contains records of his donations to civic groups. It’s a great joy for Kim that he can go wherever he wants on the subway and go home whenever he feels like it.

This man who once couldn’t imagine tomorrow being any different from today now has a dream of his own. He passed the qualification exam for middle school graduation and was admitted into the Open Secondary School. He hopes to become a mathematician, though he finds math and English “interesting but difficult.”

“You don’t need the past. The future is all that’s left”

“You don’t need the past. The future is all that’s left. The present is important,” Kim said as he proudly handed me a bunch of freshly minted business cards, which list him as a part-time activist for a group representing people with disabilities.

He is one of 11 former institutionalized people with disabilities whose oral accounts appear in the book “I Live Among You,” which was published a while back. “I really wish President Moon Jae-in would read this book and that it makes a sensation,” Kim said.

The administration of President Moon Jae-in has said it would replace the disability level system with a comprehensive assessment system in July of next year and phase out institutionalization in favor of community care. But the nuts and bolts of the discussion suggest support for retaining the institutions and simply switching out the levels for a points system. It’s not easy to provide each individual with customized support in a local community, given the current approach of categorizing people into six levels and locking them up in massive institutions in the quiet hills, where they are provided with uniform service.

It’s estimated that 30,000 people with disabilities are currently institutionalized. People who have lived in the institutions for years are unlikely to have decent social networks, and it might be even more painful for them to be released into the outside world and left to their own devices.

And so some people will ask whether there’s anything wrong with a “good institution” without violence or human rights violations, and whether people with disabilities will be able to live on their own in this harsh world. But even people without disabilities get into trouble, experience failure, get tripped up and have to rely on other people sometimes.

Perhaps what we believed was the “best protection” – hiding the disabled away, out of sight – may actually have robbed them of any desire but their basic animal cravings for food and sleep. Just as necessary as the government’s resolution to act and a big budget increase is for society to be prepared not to ignore this uncomfortable question.

Kim Young-hee, editorial writer

“A world in which we can live alongside the frail is a world in which we need not be afraid of someday becoming frail ourselves,” wrote Jang Hye-yeong in her book “Becoming an Adult.” Jang brought her younger sister Hye-jeong, who has a developmental disability, home after 18 years in an institution. More imagination is required if all of us are to live lives of human dignity.

By Kim Young-hee, editorial writer

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