(From left) Hwang Sun-hee, Lee Jung-wook, Lee Hyung-sook, and Lim Suk-jung, parents of children with disabilities, pose for a photo during an interview with the Kyunghyang Shinmun at the Korean Association of Parents with Children with Severe and Multiple Brain Lesions in Seoul on April 17. Reporter Jung Hyo-jin

“I went to the hospital because I hated my child, because I had thoughts of wanting to kill her.”

Hwang Sun-hee, 51, mother of a 15-year-old daughter with cerebral palsy and cognitive impairments, spoke these words to a reporter at the Korean Association of Parents with Children with Severe and Multiple Brain Lesions in Seoul on April 17. Her daughter has no strength in her body. She cannot move on her own, nor can she eat by herself. Lately, she has started screaming without apparent reason and is often sent home early from her special education school. Soothing her daughter’s endless cries takes up most of Hwang’s day. One day, she recalled being overcome with the thought, “I feel utterly and painfully alone.”

To mark the Day for the Elimination of Discrimination Against Persons with Disabilities on April 20, the Kyunghyang Shinmun spoke with families caring for children with disabilities. These families are trapped in constant, inescapable caregiving, unable to be away from their disabled children for even a moment. Society does not hide its discriminatory gaze, pushing them further into isolation, and they are driven to the edge of collapse. Lee Hyung-sook, 59, and Lim Suk-jung, 49, were also interviewed, along with a phone interview on April 18 with Ms. Yoon, 42, who is raising an 8-year-old son with autism.

Lim, who has a 6-year-old son with cerebral palsy, once stood on the 18th-floor balcony of her apartment, thinking, “If I jump from here, would I be able to die perfectly?” Everyone interviewed described similar psychological distress. According to a report on 24-hour care for individuals with the most severe developmental disabilities released by the Gyeonggi Welfare Foundation on 2023, 59.8 percent of the 1,414 caregivers surveyed reported having suicidal thoughts. There have also been some cases where parents have killed their severely disabled children before committing suicide. In February 2023, a father in his 40s was found dead with his elementary-school-aged daughter with cerebral palsy in Seoul. In October 2023, a father in his 60s in Daegu killed his child with a severe disability and failed in his own suicide attempt. He was sentenced to three years in prison.

Their crisis starts with endless care and culminates in isolation. Although care support vouchers exist, they are nowhere near sufficient. Without someone to take over, the primary caregiver is completely tied to the children’s care. Lim, Hwang, and Yoon all had to quit their jobs to become full-time caregivers for their children. Even talking to others about their struggles is difficult. Lee said, “When I talk about my child, other moms (of non-disabled children) must feel like I’m talking about a rock on Mars. They just don’t get it, so it’s hard to open up.” Hwang said, “There’s no longer a shared topic of conversation with friends. I’m often not welcomed at family gatherings, so now I don’t take my child along at all.”

Society’s discriminatory and exclusionary gaze further isolates them. Yoon recalled taking a taxi with her child, only to be told by the driver, “A child like this should be in an institution. Isn’t your home life ruined because of the child?” Lim also said she was once kicked out of a restaurant for bringing her child.

Hwang lived like a nomad to get her daughter into school. Over the past six years, she has moved repeatedly to Incheon, Goyang, Gyeonggi Province, and Mapo, Seoul. Three years before her daughter started elementary school, she started taking “special school tours.” This is because not all special schools accept children with disabilities. Depending on the school’s circumstances, they might accept a severely disabled student in a wheelchair last year, but this year they might refuse to accept another student in a wheelchair. “We didn’t choose the school, we were forced to find a place that accepted us,” said Hwang. Lim’s child, who lives in Gwangmyeong, Gyeonggi Province, also commutes an hour to a special school in Bucheon.

According to the Ministry of Education’s “Special Education Statistics of 2024,” there were 115,610 students nationwide who were subject to special education as of last year, a 5 percent increase from 2023. However, special schools could only accommodate 22.6 percent of them, just 26,084 students. “The competition is so fierce that in interviews, it feels like we’re competing over whose child is more severely disabled,” Yoon said.

Finding care workers for severely disabled children is another major hurdle. The more severe the disability, the more physically demanding the work. Hwang said, “As my daughter grew older, many support workers quit, saying she was too difficult to care for. It takes a lot of luck to find someone.” Yoon, unable to find any support workers, has been caring for her child alone around the clock. “Increasing care support hours is important,” she said, “but improving support workers’ pay and working conditions is even more crucial.”

The parents stressed the need for a community to share their concerns. For Hwang, the time spent with care workers and therapists is her only source of relief. Talking with people who understand her child’s condition is therapeutic. “It’s because of those moments that I’ve managed to stay alive,” she said. Lim added, “Even when offering comfort, it’s totally different when it comes from someone who is not raising a child with disability than it comes from someone who is in the same situation,” explaining how peer counseling and self-help groups have been helpful. “While these groups are often started by nonprofits or in the private sector, I wish the public sector would take the initiative,” she said.

They also called for expanded eligibility for government support. “Unless you’re in the low-income bracket, you’re expected to pay part of the costs for every single service,” Lim said. “Severely disabled people need assistive devices for everything, from eating to simply sitting, but with insufficient support, and the lack of support is a huge burden.”

Support must also be tailored to different stages of life. For instance, it is not easy for the patients to get into day care centers for people with disabilities after graduating from special schools due to limited resources. “In Korea, once you become an adult, it’s like your disability disappears,” Lee said. “After graduating from special schools, there’s nowhere for our children to go, and the support decreases dramatically.”

The parents also said that the government must create a foundation for their children’s independence, for a time when they can no longer care for them. “I want my child to live on their own after I die,” Lee said. “But when I look at the poor facilities for independence, it seems impossible.” Lim added, “What I want most is an environment where my child can live a happy life even if I’m not around. But as things stand, I sometimes wish my child would die just one day earlier than me.”