[Inside Chodong] Until the Numbers in the Budget Change

Reflecting Parents' Struggle in Budget Supplement for Developmental Disability Care
Policy Change Driven by Parental Advocacy
Expectations for the State's Role in Changing Discriminatory Lives

On the 8th, at the 'Prostration Protest Reporting Rally Demanding the Expansion of Rights for People with Developmental Disabilities' held in front of the main stairs of the National Assembly building, Lee Soyoung, the Democratic Party's Budget and Accounts Special Committee spokesperson, is speaking. Photo by Naju Seok

Last winter, I went to see a children's musical. In the row in front of me sat a family consisting of a father, a mother, and two boys. The older boy looked to be about six years old, and the younger around four. The older boy seemed a bit restless. In the middle of the show, the older boy said something to his mother. Immediately, both parents hurriedly took him outside, seemingly to the restroom, leaving the younger child alone.

What struck me at the time was the parents' response and the younger child's reaction. Normally, with two children, one parent would stay behind to watch the other child. However, both parents left together. The younger child suddenly found himself alone, but instead of looking for his mother or father, he calmly continued watching the performance. After quite some time, the three returned and the family sat together again. My curiosity grew, so I observed them more closely and realized that the older boy had a developmental disability. The family revolved around the needs of the older child.

Meanwhile, the musical was drawing to a close. The protagonist, 'Punchinello,' who had a kind heart but was always making mistakes and only ever received gray dots from those around him, finally met his creator. There, he heard the line that was also the title of the musical: "You are special." When the next words, "You are my masterpiece," were spoken, the mother, who had placed her child on her lap, hugged him tightly. Watching her trembling back, I could tell she was holding back tears.

Now, with two seasons having passed and the weather grown hot, I was reminded of that story because of the scene in front of the National Assembly. Around lunchtime, the area in front of the National Assembly is always noisy with solo protests and other activities, but this summer, a different scene unfolded. For days on end, dozens of men and women dressed in white performed prostrations to the beat of drums. In a place with no shade, these people?touching the ground with both elbows, both knees, and their forehead?were mothers and fathers demanding increased budget support for children with developmental disabilities and their families.

They were members of the Korea Parents' Network for People with Disabilities, who had adopted the slogan, "Let's change the world with the power of parents." Since June 16, mothers and fathers of children with developmental disabilities have been staging a prostration protest for one hour each day in front of the National Assembly, where there is not a single spot of shade. They are demanding an increase in the budget for programs such as the daytime activity service for people with developmental disabilities?which, due to lack of funding, leaves about 2,800 people waiting without receiving services?and the integrated care service for those with the most severe developmental disabilities. They appealed that this budget is the minimum condition for families to live together.

This time, their appeal was answered. Budget items that were not included in the government proposal were increased during the National Assembly's budget review, allowing people across the country who were on the waiting list for the daytime activity service for people with developmental disabilities to finally receive services. A total of 24.9 billion won was allocated, including funds for the allowance for people with the most severe developmental disabilities. At the reporting rally held on the steps of the main National Assembly building on the 8th, the faces of the mothers and fathers shone brightly.

The reason they were able to come this far was not just because of this summer, but because of the countless tears and earnest appeals made before. The parents explained, "Our prostration protest has been a call to change the lives of our discriminated children and to guarantee the full lives of the parents who bear these burdens with our voices." I hope that, as a result of this budget review, the state will take a more active role so that parents?who are brought to tears even by words of comfort?will no longer have to stand under the scorching midday sun.