[Welfare Advanced Nation 2030]① "Developmental Disabilities, Shouldn't Go to School?"... The 'Ordinary World' Blocked by Prejudice

Socially Vulnerable Blind Spot Series
Wanting Regular Schools but Frustrated by "Please Talk to the Principal" Response
Legalizing Government Support Is Crucial... Raising Awareness of the System Must Come First

Editor's NoteLast August in Daegu, a woman in her 30s caused the death of her 2-year-old child with developmental disabilities and then took her own life. Similar incidents have occurred in Seoul and Incheon, with over 20 tragic cases happening in the past two years. It has been a year since the United Nations Conference on Trade and Development (UNCTAD) upgraded South Korea's status from a developing country to an advanced economy, but there needs to be a deeper reflection on whether the quality of life for citizens has improved to match this new status. In particular, we aim to examine the blind spots in legal protection for socially vulnerable groups who need it most, whether new laws are required, and explore 'legislation for humanity' that the National Assembly can undertake, as well as the direction toward becoming a truly advanced country. First, we looked into the realities and areas for improvement concerning people with developmental disabilities (intellectual and autism spectrum disorders).

Seoul Seojin School, a special school that was difficult to open after parents' persistent appeals. The photo shows the interior of the school. Photo by Hyunmin Kim kimhyun81@

◆"My younger brother is just a bit slower... When can we go to school together?"

[Asia Economy Reporter Oh Ju-yeon] "I want to go to school with Jimin (pseudonym). I can take good care of him!"

Eun-young (11, pseudonym), the older sister who is four years older, always envied her peers who went to school with their younger siblings. Because Jimin’s development is slower than other children, she often has to repeat the same things several times, and sometimes he doesn’t respond or engage, which can be disappointing. However, Eun-young is neither embarrassed nor bothered by her younger brother. On the contrary, she eagerly counts down the days until they can attend school together next March and repeatedly pleads with their mother to make sure they can go together.

One reason Imo (42), a mother of a son with developmental disabilities, is considering sending her younger child to the same regular school her older child attends, rather than a special school about 30 minutes away by car, is because of this.

She was cautious, worried that having a younger brother with developmental disabilities might cause Jimin to be hurt or burdened at school, but seeing her mother who had struggled tirelessly with the mindset of "I will protect my family" made the children mature early and learn to rely on each other and grow stronger.

"Mom, Jimin is the only child you have! Is Jimin the only son you have?" The words little Eun-young once shouted tearfully still linger in her memory. Jimin, the younger brother, could not walk or speak well even after 20 months of age. Although they were advised to get a developmental evaluation and visited a hospital, the waiting time was over a year. Fortunately, through an acquaintance, they were able to get tested earlier, but the results were unexpected. They thought he was just slower than his peers, but the doctor said he had a 'developmental disability' and was also suffering from a brain lesion.

Because Jimin needed constant care 24/7, Eun-young grew up mostly alone. Feeling guilty already, she volunteered to be his guardian as Jimin’s school enrollment approached, stirring mixed emotions. The family was trapped in prejudice not only because Jimin was 'different' but as a whole. However, as a mother of two children, one with a disability and one without, she wanted to raise her children not as characters from a 'strange land' like Woo Young-woo, but in an ordinary world. Thus, the mother found the courage to send Jimin to the local regular school instead of a special school.

◆Missed ‘education’ while raising him... Education Office and Support Center only stare silently at the school principal

"For the past seven years, I have been devoted to all kinds of tests and treatments. No one told me what support the government offers or where the local centers for children with developmental disabilities are, so I, as the mother, had to find out everything from scratch by myself. But when the time came for school, I suddenly realized what I had missed. I had been so focused on childcare that I hadn’t even thought about ‘education.’"

Until now, what Jimin needed was a ‘childcare institution’ that could safely look after him, but now he needs a ‘school’ where he can learn alongside peers. However, worries arose about whether it would be possible to send him to school, given that even sending him to a regular kindergarten was not easy.

To cover Jimin’s monthly testing and treatment costs, which can reach up to 1 million won, she had to work part-time. She just needed a place to watch the child during that time, but at regular kindergartens, the reaction was, "Why would you send a child with developmental disabilities to kindergarten?" So she searched for integrated classes that required 20 to 30 minutes of commuting by car. However, the waiting lists were long, so she gave up and now Jimin attends a welfare center for people with disabilities. She will have to repeat this difficult process again when enrolling in school. According to the revised ‘Special Education Act for Persons with Disabilities,’ schools cannot refuse admission to students with disabilities who wish to enroll due to their disability. However, despite repeatedly requesting the Education Office and Special Education Support Center to establish ‘special classes’ at the school Jimin wants to attend, the consistent response was, "Please speak directly to the school principal."

◆Mothers’ self-blame hidden behind the myth of ‘early detection leads to improvement’... Entirely the ‘mother’s’ burden

Last month, news broke that a mother in her 30s took an extreme step with her 2-year-old child who had been diagnosed with a developmental disability. Ms. Lee also initially found it difficult to accept Jimin’s developmental and brain lesion disabilities. Since then, she has been caught in relentless self-blame. "Did I stress too much during pregnancy?" "Is it my fault?" "What will happen to the children if I’m not here?" She lived without even realizing she was suffering from depression, as she was so focused on raising her two children. When she sent her child to daycare, a friend said, "Your child is a bit different," and when she complained to family members, they retorted, "Who told you to have kids?"?words that pierced her like arrows. After being prescribed medication and receiving psychological counseling with her older daughter Eun-young, the emotional barriers she had been suppressing gradually began to loosen.

She tried every treatment possible after the diagnosis, driven by the belief that "early detection leads to improvement." A friend she met at a center moved from a rural area to Seoul for treatment, selling her house and spending 3 to 4 million won per month on therapy. Parents want to try all therapies that help with developmental delays, such as speech therapy and art therapy, but the cost?60,000 won per 30 minutes for non-insured treatments?is difficult to bear.

Ms. Lee says that while codifying laws is important, applying them in reality and actively promoting them is also necessary. She points out, "Even if the system is fundamentally good, it needs to be publicized. Parents of children with developmental disabilities often don’t know about government support because they are confused at first and thus miss out." She also emphasizes that developmental disability issues should not be seen only as individual problems but as issues for families and society.

"One day, I dreamed there was no door in the room. It was just me and my children, trapped with no way out. I woke up after shouting for help. I want to feel that I am not alone, that we live in a society where we live ‘together.’"