Parents living with sons or daughters suffering developmental disability in South Korea, have rarely get out of their houses, as they think they have to be with their children all the time. They are worrying that their dependents could be in trouble when equipping them with a mask and might suffer mass infection from any daycare center. Most severely disabled people are facing difficulties in getting an activity helper. 

Kim Jin-kyung (45, assumed name) thought ‘maybe’, drinking cold medicine could help since January when COVID-19 showed signs of spreading.  Kim, who has a son with developmental disabilities, Jang Min-soo (21, assumed name), said, "I took a cold medicine to avoid being taken to the hospital." The worst-case scenario was that she would be infected with COVID-19. It was terrifying to imagine that she might leave her child alone. Concerns seemed to become a reality when she heard that a person with a disability diagnosed with COVID-19 had emerged in the Daegu area in late February. The daily clinic center had no facilities for the disabled and no manpower to take care of them for 24 hours a day. Kim rather hoped that her son would be infected with COVID-19 first so that she would be able to follow her hospitalized son as a guardian. It was on March 16 that her son, Min-soo, was notified as a "self-quarantined target." A developmentally disabled person who was taking the same class as her son at a welfare center in Seongnam, Gyeonggi Province, was confirmed to be infected with COVID-19. It was reported that the disabled person had been infected by his mother. The father, who was hospitalized with his child as a guardian, was later tested positive for COVID-19.   Kim's mind went blank at the sudden news. Fortunately, the test result negative for Jang, but the whole family went into quarantine. "You should think that developmentally disabled children and mothers are almost connected like two hearts beating as one." Even while she blamed herself for being inconvenient to her neighbor, “I'm glad I didn't get catch." said Kim.   It is a disaster and a quasi-war situation for families who need to cover the absence of close care. For two weeks, the whole family was stuck in the house. On March 25, the 10th day after taking care of her son 24 hours a day without an activity helper, Mrs. Kim thought she had reached a dead end. “Though I lived thinking that caring for my children was partly the responsibility of parents, it is too hard to endure any longer.” Jang showed many unexpected behaviors such as shouting, as the quarantine period was prolonged. Even on the day when the health center staff visited to collect samples, they were unable to test Jang because he suffered a temper tantrum. “Even though we didn't get COVID-19, it feels the same as getting infected with COVID-19.”

On March 17, shortly after Jang and his family entered the self-quarantine, tragic news came from Jeju. A child with developmental disability and the child’s mother were found dead together in Seogwipo, Jeju Island. The mother left a suicide note, saying "Life itself is too hard." She reportedly continued to take care of her children at home as the opening of a special school was delayed due to COVID-19. All welfare facilities for the disabled have also been closed due to "social distancing."

“Children can't even wear a mask for a moment···"

Parents with children with severe disabilities lamented, saying "I understand her decision." Oh Eun-hee (57, assumed name), who lives in Daegu, feels through the incident that the same infectious disease is not affecting everyone the same way. “Why do sick people always get sicker in this kind of situation?” Oh's children are also severely disabled. She also quit her job to take care of her adult child. The situation caused by COVID-19 is especially overwhelming for her. She has no history of contact with a confirmed patient, but she has been in self-isolation with her son at home for more than a month now. This is because she cannot dare to take public transportation with her drooling son. "There were many reasons why it was difficult to go out before. I think COVID-19 is making our place narrower and tighter."   Most parents who raise children with developmental disabilities, like Mrs. Oh, are unable to leave their homes for a month or two at the longest. Due to reasons like "The children couldn't bear a mask for a moment," “as they might act unpredictably on the road," and “for fear of mass infection in a facility like Cheongdo Daenam Hospital,” they chose to stay at home even at the risk of having o provide 24-hour care. This was the reason why the utilization rate of the emergency care system in special schools had been low at 25 percent in the case of Seoul, even though the system is in operation.  

The inability to know when the pandemic ends is most tiresome for people with disabilities and their families. Even if, on the 6th of April schools reopen as scheduled or the self-isolation period were to be cancelled, they are not yet sure if they can leave the house.   Park Ki-chul (36, assumed), a severely disabled person, was tested negative for COVID-19 and his self-quarantine was ended. But he has not been able to find a replacement for an activity assistant who became his "hand and foot" for nearly a month. Pain on his knees and arms also continues, as he has been using his knees and arms a lot to crawl around. Park went into self-quarantine from Feb. 24 to March 4. He usually moves in a wheelchair at home, but it was impossible when he was alone 24 hours a day. He could not continue his basic daily life of eating and washing right away. Although he received supplies such as rice, ramen, tuna cans and cabbage from the Daegu Metropolitan Government and the district office, there were few groceries Park could cook by himself. "I can cook instant cup noodles alone, but it's hard to cook instant noodles, which need to be cooked in a pot with boiled water."

It was on Feb. 23 that Park's colleague, who worked at a support center for the disabled in Daegu, was confirmed positive for COVID-19. The support center was a residential facility where disabled people were preparing to stand on their own feet after deinstitutionalization. Of the 29 confirmed contacts, 13 were disabled, including Park. Activity supporters who assisted the disabled were classified as close contacts, and most of them were subject to self-quarantine.   Worries about "what if I got infected?" came to the front. There were many questions, such as whether there were separate facilities for people with severe disabilities and whether there were activity support workers available. Park called the health center several times, but he could not get through. It was at a time when excessive workload was placed on health centers as the number of confirmed patients in Daegu surged. Park was tested on March 1, eight days after his colleague was tested positive for COVID-19. His answers during interviews often ended with the phrase ‘frustrated’.   Three severely disabled people who stayed at an experience home linked to the support center (a residential facility for the disabled that prepares them to stand on their own feet after leaving the facility) entered a "together quarantine." Of course, it was only possible because Choi Woo-min, 30, a non-disabled activist, decided to help them. For two weeks, he took care of everything from meals, laundry and bathing to infection control. Choi said there was no other alternative. On Feb. 21, the Ministry of Health and Welfare proposed a plan to increase the working hours of activity supporters for disabled from eight hours to 24 hours, but it is difficult to find any helpers at a time when social distancing is being emphasized. Only two options would be left for disabled people; either being unattended like Park or filling the vacancy with someone's “sacrifice".

translated by  Jong jin Lee  translation supervised by Franz Maier, Sumi Paik-Maier