2016-03-27 13:42:10 Voices

It was a sunny fall morning in 2015 when I boarded the bus in Ulaanbaatar, capital of Mongolia. As I sat gazing through the window, a tall gentleman approached and politely asked if he could take the seat next to me. The man’s name was Dai Xiaobin, and we had met the evening before at a party held to recognize the charitable contributions of family members of Special Olympics athletes in the East Asia region. Dai is the proud father of a 16-year-old boy with Down syndrome, and he had recently received an award for championing the Special Olympics in China’s Yunnan province, where he lives with his wife and four children.

The Special Olympics is the largest sports organization in the world for individuals with intellectual disabilities, serving over 5 million athletes. One of the most notable and unique aspects of the organization is the leading roles parents take, acting as volunteers, coaches, leaders, and “change-makers.” Dai is a perfect example of the latter. In 2014, Dai launched a private foundation in China’s Yunnan province to raise money and coordinate events for children with Down syndrome. Since then, he and his family have pledged 100,000 yuan (about $15,000) per year to the cause and have collaborated with the Yunnan Disabled Persons’ Federation to organize Special Olympics training and competitions for children like his son, Renfei.

I thought Dai might have come from a humble background by his manner, and I was curious to hear how he had ended up where he did. As the bus rumbled on, he shared his story with me.

Renfei was born in 1998, nearly three months premature, in the town of Anqing in Anhui province. He was unnaturally quiet most of the time, but it wasn’t until a relative voiced concerns that Dai decided to seek the opinion of a professional. In Renfei’s sixth month, his father took him for a checkup at a hospital in the province’s capital city. When the report came that Renfei had Down syndrome and a genetic heart condition, Dai and his wife were devastated.

Both sides of the family began blaming each other for their bad genes. Under intense familial and financial pressure, Dai made the soul-wrenching decision to abandon his son. He bundled Renfei up, tucked some money into his clothes, and left him in a small alley. Then from a hidden position, Dai watched his son lie there, silent and completely unaware of what was happening. After only a few minutes Dai came out of his hiding place and, sobbing, ran to pick up his son. He promised on that day to do everything in his power to give Renfei a normal life.

Although China is rapidly shedding its traditional and often narrow-minded views, many parts of society still perceive people with disabilities as lesser beings.

In 2002, not long after Renfei had turned 4, Dai borrowed money from relatives to pay for his son’s open heart surgery in a Shanghai hospital. The surgery was a success, and afterwards the family decided to pack up and move to Yunnan. Dai founded a business selling mobile devices — a business and that would go on to become very successful. Renfei was sent to a public school where he was embraced by the teachers but shunned by other students. After some time, Dai decided to relocate with his son again.

The Dais moved to Kunming, the capital city of Yunnan province, where they looked for a school focusing on special education. Renfei’s father eventually managed to persuade a school to take his son despite the fact that he did not have a Kunming hukou — a household registration document that is normally required to take advantage of a city’s public services, such as schools and hospitals. But Dai’s worries were far from over. He began wondering if this isolated environment — in which Renfei only interacted with other children with Down syndrome — would only compound his son’s disability. Dai began taking Renfei on business trips and Buddhist retreats to expose him to more diverse environments. With the collective efforts of his father and teachers, Renfei eventually learned to speak and began opening himself up to his peers. To try and further bring Renfei out of his shell, Dai enrolled his son in a soccer program. Renfei flourished in his new environment, and in 2010 he was awarded a gold medal in soccer at China’s Special Olympics. His story was picked up by one of the regional television network’s talent shows, “China Dream.” Renfei’s performance and Dai’s goal of starting a foundation to help children with Down syndrome enamored the judges, who awarded the Dai duo 400,000 yuan to fulfill their dream.

Things have gotten much better for the Dai family, but this is hardly the end of their worries. They will continue to fight to have Renfei included in China’s education system, in the workforce, and in society at large. Their story is extraordinary, but they will continue to face the same struggles that grip so many other families like theirs. Although China is rapidly shedding its traditional and often narrow-minded views, many parts of society still perceive people with disabilities as lesser beings.

As I am writing this, Renfei is taking his two younger sisters on a long train ride from Yunnan to Anhui to celebrate Chinese New Year with their extended family. His sisters and those who know Renfei call him an inspiration.

In fact, Renfei inspired me the first time that I met him, right after Spring Festival in 2015. I encountered a young man completely in control of his surroundings. His body was toned, and he looked into my eyes when we shook hands. He spoke gently, with a stutter, but his voice was firm and quietly confident.

It’s easy to mitigate the successes of people with disabilities. How many young people in our community will have the opportunity to be inspired by stories like Renfei’s? Is it simply because we don’t let them inspire us? I know that in the years to come, Renfei will be a change-maker, leading his foundation to change many lives, including those of people with and without disabilities.

(Header image: A soccer team member with Down syndrome trains for the National Special Olympics in Hangzhou, Zhejiang province, Aug. 17, 2010.  Shower/VCG)