"To Prevent Inadequate Disability Policies from Becoming Tragedies"…An Appeal from Families of Disabled Persons

Movie still from 'Bokji Sikdang'. Jaegi (played by Jo Min-sang) is receiving a disability rating assessment. Photo by Indiestory

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[Asia Economy Reporter Park Hyun-joo] In the film "Bokji Sikdang" released on the 14th, Eun-ju (played by Han Tae-kyung) struggles to care for her younger brother Jae-gi (played by Jo Min-sang), who became disabled due to a sudden accident. Eun-ju, who was fired from the restaurant where she worked, even contemplates selling the house where she lives with her son to make ends meet. Eun-ju’s situation vividly reflects the difficulties faced by families of disabled persons who are subordinated to caregiving, highlighting the harsh realities threatening families with disabled members.

Organizations representing parents of disabled individuals criticize the lack of support services and policies for disabled people, arguing that the responsibility of caregiving is entirely shifted onto families. In particular, for people with developmental disabilities who require assistance from others in daily life, it is difficult for caregivers with jobs to provide 24-hour protection for their disabled family members. The National Parents’ Solidarity for Disabled Persons claims that since over 80% of people with developmental disabilities need help from others in daily life, the burden of caregiving should be shared by the state and local communities.

As they assert, tragic incidents in families with developmentally disabled members, unable to overcome the walls of reality, occur repeatedly every year. In November last year, in Damyang, Jeollanam-do, a father in his 40s with developmental disabilities killed his 13-year-old developmentally disabled son and his mother in her 80s before taking his own life. On March 2nd of this year, incidents where biological mothers caused the deaths of their developmentally disabled children occurred in Suwon and Siheung, Gyeonggi Province. Both families were single-parent households receiving basic living subsidies and were suffering from severe financial hardship.

In response, the National Parents’ Solidarity for Disabled Persons is urging the Presidential Transition Committee to include the establishment of a 24-hour support system for people with developmental disabilities as a national agenda. On the 20th, marking "Disability Day," they held a head-shaving ceremony and press conference near the Blue House in Jongno-gu, Seoul, demanding ▲expansion of activity services mainly during daytime ▲abolition of the support obligation criteria for medical benefits under the National Basic Livelihood Security System ▲expansion of employment systems for people with developmental disabilities ▲securing and supporting public rental housing, among other requests.

Yoon Jong-sul, representative of the National Parents’ Solidarity for Disabled Persons, raised his voice saying, "If we (caregivers) disappear immediately, our (developmentally disabled) children will be left alone in this world without any support system," and added, "Is it an unreasonable demand of ours to ask for at least daytime care services and housing services so that they can live in a world without parents or siblings in the community?"

Among the 555 people who participated in the head-shaving ceremony that day was Jang Hye-young, a Justice Party lawmaker who has a younger brother with developmental disabilities. Lawmaker Jang said, "I believe that creating a support system that allows people with developmental disabilities to live together 24 hours a day is the most important mission I took on when I entered the National Assembly," and apologized, "Two years have passed, but I am very sorry that politics has not been done properly to the extent that you have to come back to this place again."

Lawmaker Jang also urged the passage of disability support bills such as the Disability Rights Guarantee Act and the Deinstitutionalization Support Act, which are pending in the National Assembly, during the April extraordinary session. She said, "Many fellow lawmakers are not paying enough attention to this issue," and explained, "As a form of protest, I am shaving my head with you all to remind my fellow lawmakers of what we really need to do now by showing them our shaved heads." She promised, "I will do everything possible in the National Assembly to ensure that people with developmental disabilities can live together in the community freely and equally, not just as someone’s family member but as citizens of the Republic of Korea."

On the afternoon of the 19th, a day before Disabled Persons' Day, Jang Hye-young, a Justice Party lawmaker, participated in a group head-shaving event at a 1-night, 2-day intensive resolution rally organized by the National Parents' Association of Persons with Disabilities near the Blue House, aimed at establishing a 24-hour support system for people with developmental disabilities.
[Photo by Yonhap News]

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At the rally that day, Park Kyung-seok, co-representative of the National Solidarity Against Disability Discrimination, who staged a "commute subway protest," also attended. He asked, "The Constitution of the Republic of Korea talks about freedom and equality, but what freedom and equality did we have?" and emphasized, "It is about moving in the community, receiving education, having opportunities to work, and talking about a 24-hour support system to build relationships in the community, not in prison-like residential facilities." The subway protest by the National Solidarity Against Disability Discrimination recently sparked discussions about disability rights in our society.

In this regard, President Moon mentioned on Facebook the achievements such as the expansion of the disability budget, abolition of the disability grading system, and increase in disability pensions, saying, "Although the pace of disabled and non-disabled people is different, we live together. We must create a world that can wait for slower people." He added, "We must blame our own indifference for not being more considerate of the mobility rights of disabled people. A world without discrimination is the path we must take. I hope that walking beyond prejudice becomes the life of all of us."

The Transition Committee announced on the 19th a "disability policy to realize a society without boundaries between disabled and non-disabled." Regarding the demand by families of people with developmental disabilities for a "24-hour support system," they said, "A 24-hour care pilot project will be conducted in Gwangju from this year until 2024," and "Based on the evaluation of the pilot project, introduction will be considered in 2025." In addition, to strengthen the guarantee of mobility rights for disabled people, they announced plans to mandate the replacement of city buses with low-floor buses starting in 2023 and to expand the introduction of high-speed intercity buses that can accommodate wheelchairs.

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