A Mother and Son’s Battle Against Down Syndrome
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2016-05-16 03:16:24

The first time I met Bai Ye she was elegantly dressed in a blue Mongolian robe. She was obviously proud of her upbringing even though her features were distinctly Han Chinese.

Her parents were sent to northern China’s Inner Mongolia Autonomous Region in the 1950s as part of a policy to support the growth of minority regions. Bai was born in the regions capital city of Hohhot and considers herself a local. This is the place she grew up in, where she attended university, and where she has worked for most of her adult life.

But everything changed after her son Ge Genfu was born. He maintained a fever during his first few weeks, and when he was 40 days old, Bai took him to the hospital, where she received some bad news. It turned out that the illness was much more serious than she had thought, and the doctors suspected Genfu had Down syndrome. They told a distraught Bai that if the diagnosis was correct, her son may never be able to speak or walk.

Bai had to wait three days for the test result, but when they came back they only confirmed what the doctors had suspected. Bai was devastated. Her first reaction was to try and find medical treatment available for her son no matter what the cost. To do so they would have to leave Inner Mongolia and begin a journey that would take them across China.

Speaking with the teacher she found that Genfu had unraveled both sleeves by himself. Most other mothers would be furious, but Bai was ecstatic. To her, this showed that her son’s fine motor skills were developing well.

Over the course of the next seven years, Bai took Genfu to every major hospital in the country. At one point, they even spent the night in the courtyard of a temple when someone told Bai that faith may cure her son.

Finally, after multiple visits to the Beijing Children’s Hospital a doctor bluntly told her that she had two options: either accept reality and begin working on ways to improve Genfu’s situation, or leave him on the corner of a street.

The pair returned to Inner Mongolia. When Genfu reached preschool age, it was nigh impossible for his mother to find a suitable place, but she finally convinced a friend who was the head of a local kindergarten to take him. The teachers were nice enough, but Bai soon discovered that Genfu spent all of his time alone when she wasn’t around. His peers didn’t know how to interact with him and the teachers were simply too busy to give him their full attention.

One day when she picked him up she found that his sweater sleeves had disappeared. Speaking with the teacher she found that Genfu had unraveled them by himself. Most other mothers would be furious, but Bai was ecstatic. To her, this showed that her son’s fine motor skills were developing well.

To further improve them and to increase his attention span, Bai had Genfu practice scooping beans out of a bowl and count them. Coincidentally, this is actually a part of the Montessori method, which is considered in China to be an elite education. But very few Chinese know that Maria Montessori’s education program was also designed to help intellectually disabled children improve their self-awareness and motor skills.

When Genfu turned 8 years old he was sent to a special education school. He began a nine-year program just like every other Chinese child, except his curriculum was altered to suit his abilities. The Chinese Ministry of Education mandates that all children must undergo nine years of schooling, regardless of physical and intellectual disabilities. 

After graduation, Genfu remained in Hohhot, where he spent four years in Sunshine Home — a community learning center for intellectually disabled people. Like others there, Genfu continued working to improve his social and communication skills to help him become self-dependent. But the problem remained for Bai on where Genfu could go from there. At this point Bai had become the chairperson of Hohhot Parents and Friends Association for Intellectually Disabled People — an association overseen by the China Disabled Persons’ Federation.

In 2013, using her influence as chairperson, Bai opened the Sunshine Factory in Hohhot, which was designed to be a factory offering employment opportunities to people with intellectual disabilities. The employees produce a range of items, from beaded jewellery to tooth paste for hotel amenities suppliers. Genfu has flourished in his new environment, where he now works as general manager.

The financial reward isn’t great, but he’s happy. It is hard for many intellectually disabled people to join the workforce, and can often be damaging to their self-esteem when they run into conflicts with customers or employers. The deck was stacked against them, but Genfu and his mother have pulled through and succeeded.

I asked Bai whether she will be able to receive a government subsidy for the Sunshine Factory, and how she will work to bring higher pay to the workers. She said she is working on improving Sunshine Factory’s legal status and that once she does she will have the opportunity to promote it more aggressively. Her aim is to bring more awareness and opportunities to those suffering from intellectual disabilities in Inner Mongolia.

I believe that at the heart of things Sunshine Factory is just a shelter to protect her son. But it is the first step on his and many others’ journeys to independence. Soon he will be able to go out on his own, find a job, and be accepted by his peers as a productive member of society.

(Header image: A teacher works with a boy suffering from Down syndrome to develop his motor skills at a kindergarten for disabled children in Shenyang, Liaoning province, Oct. 17, 2011. Sun Lin/VCG)