Fighting the challenges of disability with music

Lee Gyeong-ae remembers Dec. 15 of last year as the most monumental day of her life.

It was the opening night of the Heart to Heart Orchestra concert, of which her autistic son, Jae-yoon, is a member. Sitting in the Seoul Arts Center, one of the most prestigious venues for the performing arts in South Korea, Lee could not stop crying even before the curtain rose.

“I never thought that such a day would come,” Lee said. “I never thought Jae-yoon would one day perform at the Seoul Arts Center. When he first started playing cello, I just wished that he’d able to play ‘Twinkle, Twinkle, Little Star’ in the next 10 years.”

Jae-yoon, 21, is one of some 60 members of the orchestra, which is the first nonprofit ensemble consisting of young people with developmental disabilities ― including autism ― in South Korea. First founded in 2006, the orchestra has performed for numerous occasions, including the opening ceremony for the 2013 PyeongChang Special Olympics World Winter Games.

“I think of Jae-yoon as a miracle,” said Lee, who spent almost 10 years crying every day after learning that her son was developmentally disabled. “We nondisabled people usually don’t end up using our abilities to the fullest. Jae-yoon, on the other hand, is using 200 percent of his abilities and possibilities.”

The number of developmentally challenged young people is on the rise in South Korea, according to the National Health Insurance Service. In 2012, some 29,900 people were treated for developmental challenges, including autism, and 78.1 percent of them were children under age 14. The total number of patients has increased by 19 percent since the year 2008.

Among the developmentally disabled, those with autism are often indifferent to social activities and unresponsive to others. They may also have communication difficulties and an intellectual disability that can lead to a lack of skills needed for everyday living.

The employment rate for the disabled is 2.48 percent in Korea, Asia’s fourth-biggest economy. This means more than 95 percent of persons with disabilities are unemployed in the country.

“The issue of employment is what we think is our next problem to solve,” said Sohn Eun-kyung from Heart to Heart Foundation, which established the orchestra. “We are thinking of ways to give options to the members even after they leave the orchestra.”

Han-gyeol, an autistic trumpet player in the orchestra, has one of the most remarkable success stories in the group. The 20-year-old now attends Korea National University of the Arts, one of the most prestigious music schools in the country. Han-gyeol, who has been a member of the Heart to Heart Orchestra since its founding year of 2006, dreams of becoming a professional trumpet player.

The journey hasn’t been easy. Han-gyeol was often bullied in middle school by his nondisabled classmates, who thought he was favored by the teachers because of his musical abilities. Han-gyeol’s talent was obvious from a young age; he would remember what his friends played on a melodica in kindergarten ― the teachers only allowed him to play a triangle ― and play the songs on his own melodica at home.

Han-gyeol is known for his passion for the trumpet. For him, music is literarily his everything. It is his only dream and he desperately hopes to achieve success. When he was younger, Han-gyeol would hit his mouth with the instrument whenever he was frustrated with the sounds he produced.

“Han-gyeol never told me anything about the bullies while attending middle school,” said his mother Jang Eun-sil.

“It was when he was in high school that he told me. He was very stressed at the time because he really wanted to get into the Korea National University of the Arts. Han-gyeol said he was sad because those who bullied him never even listened to his performance.”

Cho Hyeon-woo, a musician who has been teaching the orchestra members since 2010, said it is necessary for his students to be realistic with their goals.

“What is ironic is that autistic musicians are rarely moved by their own performances, while their music may move the audiences,” he told The Korea Herald.

“They may have fun, but they don’t really feel anything. And this is a major flaw as musicians. The members should take this into account. On the other hand, I don’t always look at a disability as a disadvantage. You can think of it as one of the unique traits or qualities that makes you original as a person. There are great examples such as Andrea Bocelli.”

Although music has helped them fight challenges, the social stigma is still very hard to deal with for the parents. Jae-yoon’s mother used to avoid meeting her friends for many years, thinking they might look down on her for having a disabled child. For Han-gyeol’s mother, it is still very hard to talk about the day her son was diagnosed with autism without tears.

“The psychiatrist said there was no cure for it in a rather cold, almost ruthless voice,” said Jang. “The clinic was in Ilwon-dong, and I remember taking the subway home with Han-gyeol. I remember crying throughout the entire subway ride, while squeezing Han-gyeol’s hand.”

By Claire Lee (dyc@heraldcorp.com)