During that time, ABILITY Magazine (AM) and China Press for People with Disabilities (CP)—including their sister publication Spring Breeze, announced their intention to exchange editorial content that would be published in both China and the US. And over the months, they followed through with their editorial exchange, including articles on autism, art therapy, rare diseases, and teaching with a disability. The stories have been of a human interest nature—exploring common experiences, as well as the differences, that people with health conditions and disabilities face in both countries.
Another agreement between CP and AM is the first ever art exhibition in the US, featuring the works of Chinese artists with disabilities. And the following year, CP will, in return. host an art exhibition showcasing the works of American artists with disabilities in China.
Recently, Ni Lin, publisher of CP, and Wei Mengxin, China’s United Nations delegate, and several of their colleagues who had hosted Cooper in Beijing, paid AM a visit. They spent several days in Southern California, meeting some of the AM team, watching the surfers from the Huntington Pier, seeing highlights of Los Angeles and enjoying an evening at the annual Disability Rights Legal Center (DRLC) gala.
As a special portion of the gala, Ni and the delegation presented a beautiful framed carving to DRLC Executive Director Paula Pearlman, for allowing the CP and AM to promote the forth coming art exchange project. Eight of the art pieces were unveiled during the event. More than 80 pieces will be part of the coming exhibition.
The gala, also known as the Franklin D. Roosevelt dinner, is dedicated to America’s 32nd president. FDR had polio and—behind the scenes—got around the White House in a wheelchair. This year, the FDR dinner noted positive portrayals of disability in distinguished network television programming. Kurt Yaeger, a co-star of Sons of Anarchy hosted.
Also on the bill for the evening were the Sundance cable network stars—and our past cover subjects—The Push Girls, who navigate the world in wheelchairs, along with Ashley Fiolek, our longtime columnist. The DRLC’s mission is to champion the rights of people with disabilities through education, advocacy and litigation, while ABILITY Magazine, along with its Chinese counterparts, seeks to provide new insights and awareness into our individual levels of ability.
This next story is part of a series of articles published as part of an exclusive editorial exchange between China Press for People with Disabilities/Spring Breeze and ABILITY Magazine.
At 86, no one believes that she still works. But she can often be found traveling alone by bus from her home in Sanlihee, to the facility in Beijing where she serves as a consultant. She refuses to use a driver: “Each way takes two hours. It’s a waste of time for him.” When others tried to persuade her otherwise, she became angry. Finally, a compromise was reached: At the end of the day, a driver takes her a short way to a station where she rides the bus the 20 stops back home.
Born in 1926, Mao Yu-yan is the daughter of Mao Yi-sheng, China’s leading expert on bridge construction. She’s a researcher on the psychological health of infants at the Chinese Academy of Sciences. In 2000, she was awarded the China Naito International Award for Child Education for extensive research in early training of children with developmental disabilities.
An Alarming Rate: One in 100
It was in 1975 that a doctor from a hospital in Beijing was asked to test the IQ of children with developmental disabilities. At the time, strange new therapies were being used to treat them, such as having them eat pig brains, or injecting the children’s brains with various animals’ fluids, and other such concoctions. Mao’s job as a researcher was to work with the doctors.
The pig brains, supplied by the Beijing Meatpacking Plant, were processed into drugs to treat 160 children with developmental disabilities. Soon, however, researchers discovered not only was there no value in these treatments, but they also led to serious side effects, such as high cholesterol and obesity. The experiments were soon interrupted by the devastating Tangshan Earthquake in 1976.
After things settled down again, Mao continued her work. She volunteered to go to a local Beijing clinic to explain the difference between amentia and psychosis to the nurses and doctors there. She received a list of 788 people with developmental disabilities, which accounted for about 3.4 percent of the total numbers she surveyed.
“I was astonished by the high ratio! Three people in 1000 are have a mental disability,” she said. Because the samples did not include the so-called underachievers and children under three years of age, she began to wonder if the ratio might be higher. After she conducted further research, she came up with a new ratio of 1.07%, which was widely accepted. But the news didn’t lead to widespread concern, because most people thought there was no hope for these children. Mao insisted that they had a lot of untapped potential.
“I kept appealing to the public to recognize that the early training of pre-school age children with developmental disabilities is very important. If they are over six years old and miss that window for training, their IQ is unlikely to improve,” she says.
Mao befriends the children’s parents. They often have heart-to-heart talks, even sharing details of their personal lives. More and more people know her name, and she receives a lot of mail from distant places. “Some of their questions are hard to reply to, so I give them common sense advice, and comfort them again and again, often remaining awake all night,” she says.
When asked if her famous father influenced her career choice, Mao says “no.” In her memoir, she recalls that her father was so kind-hearted that every payday, he would first send money to someone else in need, and then budget for the family’s expenses. Following her father’s personal example, she sends money to a family member with a developmental disability just as she has every month for the last 40 years.
In 1980, as a visiting scholar, Mao studied at Cornell University for six months. When she returned to Beijing, she initiated a program for educating children with developmental disabilities, and then promoted the early form of special education schools in Beijing. At the time, some of her colleagues at the Chinese Academy of Sciences chose to research gifted children, which was low cost and rewarding, while Mao devoted herself to the research of children with developmental disabilities.
A New, Long March
From 1980 to 1986, Mao researched the psychological development of roughly 1000 infants and young children, focusing on a close study of 29 children from birth to age three. Based on this research, she designed the first diagnostic scale to provide the foundation for diagnosis and treatment. While in her sixties, she spent a great deal of time traveling to clinics to conduct inquiries.
At the same time, she began writing training manuals, but could not get access to outside resources for more information, except from brochures. Drawing from her own experiences, as well as what she read in brochures, she classified and analyzed her data, and finally completed The Early Intervention Program for Mentally Retarded Children, which is the predecessor to The Early Education Manual for Mentally Retarded Children.
The manual was published in five colors: sea blue, pink, yellow, beige and light blue, which correspond to specific areas of training, which include physical movement, fine motor skills, language, cognitive capability, and social behavior. “The manual is very thick,” says Mao, “covering everything, so that therapists don’t need to use other books.”
Still, her full vision has yet to be realized due to a lack of support. Some doctors and therapists at large hospitals didn’t believe children with developmental disabilities can learn vocabulary beyond the word “Mom.”
Undeterred, Mao headed to the library to look for other ways to achieve her goals. One summer morning, she found her inspiration in a foreign book. She learned that parents in the United States were instrumental in getting laws passed to prevent prejudice, and to ensure the education of children with developmental disabilities. “It was a beacon calling me forth,” she would later say. She realized it was possible to organize the parents of these children to help build a special school.
In 1985, 16 like-minded strangers gathered in the meeting room of a mental institute to discuss how best to establish a school for these children. A preparatory committee was formed. She named the school Xinyun, which means that it could offer a new destiny to unlucky children.
Finding Dignity in Cleaning Tables
Though its establishment attracted wide attention, and especially won the support of many celebrities and experts, the Xinyun Institute has still had to relocate a number of times. It began in Zizhuyuan, with two rooms, three retired women, two children with developmental disabilities, and an old organ.
“What are you doing here?” curious passersby would sometimes ask.
“We are training these children,” teachers would reply.
“Is it necessary to train them? It sounds interesting,” they would say.
Over time, the children’s’ numbers grew: From two to four, and then to 20. The school had to be relocated as rents rose and spaces grew too small, Despite the poor conditions, the teaching remained rigorous and precise. Mao divided the children into three classes according to their ages, providing group teaching, activities and individual training. Each child received an individualized program.
“When I wrote the manual, I had no idea if it would be productive,” Mao recalls. At the time, her manual was the only guidebook available, so it was difficult to find comparable education methods.
Fortunately, the 20 children she trained improved and eventually entered special education schools or conventional primary schools. Since 1985, 500 children have received education and training at Xinyun.
“In the beginning, I was too naïve. I thought they could learn easily,” Mao recalls. “But that is far from the truth. I have recorded that one needs to teach a severe child 800 times to remember a word. Language is very difficult for them,” she says.
“Though learning such tasks as how to use a toilet requires extreme patience and effort, the children still make great progress,” explains Mao. “If a child learns and has the capability to clean the table, it is a marvelous advance. In other countries, for a severe child, no matter how small the progress, he or she receives a graduation certificate. We agree with that, too. If a child can clean the table, it is also a way to show his dignity.”…… continued
Articles in the Kurt Yaeger Issue; Ashley Fiolek — Off Season, But Still Racing Around; Geri Jewell — Let’s Vote for Each Other; Humor — A Day in a Life; Philippe Croizon — Quadruple Amputee Swims Four Straits; Paul Pelland 2 — MS, Eat My Dust!; Rick Howland — His Lost Girl Fantasy; Solo-Dx — Silence Never Sounded So Good; The Sessions — The 38-Year-Old Virgin; Kurt Yaeger — ‘Son of Anarchy’; China Press — Art of the Exchange; Chinese Lessions — She’s 86, Teaching From the Heart; DRLC — Enforcing the ADAs; ABILITY’s Crossword Puzzle; Events and Conferences… subscribe