An article in Post Magazine, of the South China Morning Post, quotes Associate Professor of Education Helen McCabe for her expertise in disability rights in China. The article details the struggle of Zhang Yonghong, a disabled man and single parent in China who shares a debilitating condition referred to there as “glass doll disease” with his daughter.
His story is used to exemplify the difficulty of disabled people in China to gain education, work and often even just human kindness. McCabe and her sister founded The Five Project in China, a non-profit organization dedicated to increasing the capacity of disability organizations in that country, and has worked with parents in families in China to help them learn to advocate for rights for their children, particularly in the area of education.
“There is a compulsory education law and the law also protects people with disabilities,” said McCabe. “But there’s no mandate – there’s nothing that says if you have a disability they will provide you with funding, or with education, or employment. There is no penalty for turning children with disabilities away from schools.”
The article adds McCabe “says there are special education schools in many districts of the larger cities, and disabled children stand a good chance of getting in ‘if one’s intellectual disability is not too severe.'”
McCabe joined the faculty in 2004 and is an expert on autism and its relation to education, family and social change in the U.S. and China. Her most recent scholarly writings include “The Importance of Parent-to-Parent Support Among Families of Children with Autism in the People’s Republic of China,” published in the International Journal of Disability, Development, and Education and “Two Decades of Serving Children with Autism in the People’s Republic of China: Achievements and Challenges of a State-run Mental Health Center” which appears in the May 2008 volume of Disability and Society.
The article that was written by Paul Mooney P’12 follows.
In the Shadows
Paul Mooney • April 1, 2012
Left behind by the mainland’s economic ‘miracle’, life for many disabled people is a desperate struggle for survival
Zhang Yonghong sits on the floor of a busy Beijing subway, a few thin cushions his only protection from the cold ground. Surrounded by hundreds of paper cuttings, he leans forward with a knife, his face creased with concentration. He carefully carves folk images out of a piece of bright red paper. Zhang is 38 years old but no taller than a toddler, the result of a condition the Chinese call the glass doll disease, so-named because sufferers have bones that break easily and they are generally shorter than normal. Unable to walk and confined to a wheelchair, Zhang struggles to make a living selling his artwork, spending his days on the streets of Beijing battling hot, humid summers and bitingly cold winters, and the ever-vigilant Urban Management Corps, a unit whose job it is to keep people such as Zhang out of sight.
On this bitterly cold day, Zhang is wearing a pair of children’s padded pajamas and several layers of jumpers. His Sponge Bob backpack sits at his side. People stop to glance at the handicapped man’s artwork, some buying a few pieces, others dropping small bills into a red donation box. Many stare at a large plastic sheet on the floor which tells the story of the Shaanxi province native and includes a picture of his four-year-old daughter, Tianyu, who suffers from the same disease. Also on display are Zhang’s recent divorce papers – his wife ran off with another man. In the photo, the little girl lies on a bed crying, casts on one of her arms and a leg. A headline proclaims: “I use my skills to save my daughter.”
A young man of about 20, with a wispy beard and a woolen hat pulled down over his head, stares at the paper cuttings and then suddenly bends down to give Zhang a hug. He whispers something, then spins away. An observer taps the young man on the shoulder and thanks him for the kind gesture. The man turns around, tears welling in his eyes, and says somewhat helplessly, “This is my country.”
The comment is a stark reminder of the situation facing the mainland’s estimated 83 million handicapped people, most of whom have been left behind by the nation’s economic “miracle.” While even critics of the government concede that there has been some improvement in the care of handicapped people, the general consensus is that it’s been too little, and, for many, too late.
“It’s improved from 20 years ago,” says Helen McCabe, who has been working with autistic programmes in the mainland since 1992. “But there are still so many things families [must] provide, so it’s challenging.
“Every programme you have to pay for out of your own pocket,” says McCabe, a professor of special education at Hobart and William Smith Colleges, in New York. “It keeps going back to family responsibility.”
She says that although the mainland has many laws and regulations on the books, such as guarantees to the right to community-based rehabilitation, in reality the protections are not implemented. The disabled can get stipends from the government, but these run from as little as 100 yuan (HK$120) a month to 600 yuan, depending on the area. The money is distributed by the Chinese Disabled People’s Foundation (CDPF), but one must have a significant level of disability to qualify and many are unaware such funds, as meagre as they are, exist. In some cases, families are reluctant to admit a family member is disabled and so they don’t register for a disabled ID card.
Li Xiaolong, a disabled man who earns a living by painting with his feet on the streets of Beijing, says: “Dalian [his home city, in Liaoning province] gives me 100 yuan a month. My expenses are more than 2,000 yuan a month.” He says he doesn’t bother to claim the funding.
People working with the disabled criticise the CDPF for doing little to improve the mental wellbeing or rights of the handicapped. “The CDPF does a lot,” says Lv Fei, who works for an NGO that supports disabled people. “But it pays attention to things that can be seen. It doesn’t do anything to improve the ‘software’ environment.”
The CDPF is even seen as being a hindrance by some.
“There are many examples of how the government facilitates the CDPF to interfere in the work of the formal and informal network of disabled civil society organisations and NGOs,” says one activist, adding the CDPF “does almost nothing in terms of protection and defence of the fundamental rights of the disabled.”
“The government does not like civil society being so active – it’s a political issue,” says a woman who works with disabled people. “If you have NGOs, it says that must mean there is a deficiency in government policies and then the people will not respect the government as much.”
During the 2008 Beijing Olympics, “the government [implemented] a regulation [that meant] the mentally ill could not appear on the street,” says the mother of a disabled boy who does not want to be named. “They put my son in a psychiatric hospital for about six weeks. There was nothing I could do. He was very angry and didn’t want to go there. He cried every day.”
McCabe says: “There is a compulsory education law and the law also protects people with disabilities. But there’s no mandate – there’s nothing that says if you have a disability they will provide you with funding, or with education, or employment. There is no penalty for turning children with disabilities away from schools.”
She says there are special education schools in many districts of the larger cities, and disabled children stand a good chance of getting in “if one’s intellectual disability is not too severe.” In some cases, though, says a woman who researches the situation facing handicapped people, schools don’t even have the ability to identify who is autistic. “They often send the students to centres for juvenile delinquents,” she says.
Another problem is that there are not enough special education schools in the mainland. In smaller towns and rural areas there are none. Yu Haibo, the founder of Yuxin, an NGO that works with the disabled in Changchun, Jilin province, says: “Handicapped children require a parent to take them to school, but in rural areas, schools are often very far away. And then the teacher may say it’s too much trouble, because the child needs help [in the classroom].”
Yu, who suffers from brittle bone disease, adds: “Families in rural areas don’t have the resources, and they will think, ‘Will he be able to get a job after he graduates?’ Rural families who have several children will put their resources into the healthy ones.”
For decades, universities were reluctant to accept disabled students, even ones who scored high on the national entrance exam, arguing that the establishments lacked facilities and proper access. That situation has improved in recent years.
Hu Jianhua, a Beijing mother of a 21-year-old autistic son, Xiaopeng, tells how one school after another rejected her child for being difficult to control and for striking other students, which caused problems with the other parents. “I frequently got calls at work telling me to come to the school,” she recalls, crying. She made the rounds of many schools in the capital. “Some schools accepted him, but the tuition was too high and I couldn’t afford it. Other places, he refused to go to because the conditions were poor.”
Some 43 per cent of disabled mainlanders over the age of 15 are illiterate – that’s perhaps as many as 36 million people, says Betty Bin, an assistant project co-ordinator with the Beijing Yirenping Centre, which was established in 2006 to promote social justice and public health, particularly for disadvantaged groups.
Nationwide, only 63 per cent of disabled children aged six to 14 are enrolled in schools, and only five million people with disabilities have graduated from high school. About 85 per cent of poor people with disabilities have not been educated past junior middle school. Some observers put part of the blame on parents, who are said to be over- protective. Bin disagrees, blaming a lack of “barrier-free schools”.
“Few parents would want their children to be illiterate,” she says.
Even if they have had a good education, companies have been reluctant to hire disabled people.
“Companies think people with disabilities are not as productive as people without disabilities,” says McCabe. “And they’re afraid it will create a stigma – ‘What’s wrong with that company? They hire people with disabilities.'”
In 2008, the revised Law on the Protection of People with Disabilities stipulated that companies are required to fill 1.5 to 2 per cent of their posts with disabled people. However, companies can opt out of the quota by paying into an employment guarantee fund. The CDPF has reportedly stated that less than 10 per cent of companies have made arrangements to employ the disabled.
“Some companies ask me to introduce handicapped people to them, and I will ask what kind of people they’re looking for,” says Yu. “They generally reply, ‘With a speciality.’ But there’s no way that is going to happen because, previously, colleges have not accepted handicapped people – and so there are not many with a college education.”
Yu says the employment guarantee fund is supposed to be used to promote the employment of disabled people, but the money has become the main source of funding for operations and wages at the CDPF and subsidiary labour-services organisations.
She adds that disabled people have asked for the fund’s expenditure to be set out for all to see but their attempts to discuss the issue have been repressed.
A Yirenping survey carried out in 30 cities this year found that even in the civil service, the proportion of disabled persons in the workforce was much lower than the 1.5 per cent legal requirement. The highest proportion was 0.39 per cent, the lowest 0.02 per cent.
ZHANG, WHO LEARNED THE traditional art of paper cutting from his grandmother when he was 12, ran away from home when he was 18, with the help of friends. He tells of paying someone to get him on and off the train that delivered him to Xian – an overnight journey from the countryside in which he grew up.
He then moved to Guangzhou. Without a wheelchair, he was forced to drag himself along the ground, getting so dirty that no one would rent him a room. It was there that he was detained by the police for 40 days, before being sent back to Xian.
“I remember sleeping in the doorway of a department store in Xian when the snow was this thick,” he says, holding his hands wide apart.
At one point, thieves put a knife to his neck and stole his money. He was eventually detained by police, who called his parents and told them to send someone to take him home.
“I spent a year back home but couldn’t stand it,” he says. In 2008, with a wife and child, he decided to move his family to Beijing to seek medical help for his ailing daughter. Zhang saved up 3,000 yuan and used it to buy a motor scooter with housing attached, and he drove for five days and nights from Xian to Beijing.
“When I was young I never went to a big hospital because my family was poor and so my illness was never diagnosed,” he says. “I never knew what my illness was until I took my daughter to see a doctor in 2009. The doctor said I was a glass doll.”
As a child, with no wheelchair, Zhang says he was pulled around his village on a broom by friends. His bones had broken more than 100 times by the time he turned 18, when they began to strengthen. By then, he was already crippled.
His wife divorced him last year, leaving him to care for their daughter. “She felt we were not going anywhere and that it was difficult having to spend so much on our daughter’s medical expenses,” he says.
With no one to help him, he would take Tianyu to the subways where he worked, tying her to his wheelchair to keep her from wandering off. When people criticised him for doing this, he sent her back to his home village to be cared for by his family. “But God! What was I to do?” says Zhang.
Selling his handiwork in the Beijing underpasses helps pay Tianyu’s medical bills, but he has to play a cat-and-mouse game with the authorities. Several weeks ago he was detained and spent the night in a police station.
He has made the rounds of the CPDF, the neighbourhood committee and the police to seek a licence to sell his art in a busy subway near Beijing Zoo. He was passed from office to office, with no one offering help.
When the National People’s Congress opened in Beijing last month, Zhang and other disabled people were told to stay out of sight until the meetings came to a close. For three weeks, he was unable to make any money. Friends advised him to return home, but he says that, if he did that, he’d “only be awaiting death”.
“I need to find a way to get through this impasse,” he says sadly. “I want to make money to treat my child. If I die, there will be no one to take care of her.” He says his parents, who are farmers, are too old and too sick to properly care for Tianyu. His dream is to open his own shop, selling paper cuttings and embroidery.
“I don’t think the government is doing as much as it can,” says McCabe. “They’re putting all their money into highways and high-speed railways when they could be putting money into education and services for people with disabilities. There’s a focus on quantity and not quality. This means it’s about how many buildings there are; it doesn’t mean that these disabled kids know how to dress themselves or have been given any opportunities.”
The question of what will happen to disabled people after their parents die haunts families. The government makes no provision for them. In some cases, families will have a second child – the one-child policy is relaxed for parents of disabled babies – to take care of the one with the disability, a huge burden for the younger sibling. “Even though it’s more expensive to have a second child, the poorer they are, the more likely they are to do it because they can’t pay someone a lot of money to take care of their kid in the future,” says McCabe.
One alternative is death. McCabe says there are families who say they will kill themselves and take their disabled child with them because they are worried that he or she will not survive, will be mistreated or, like many before them, end up in orphanages. Last year, in Nanjing, a father leapt into the Yangtze River with his disabled son.
“That’s how some parents plan to take care of their kids,” says McCabe, “to make sure the children go before they do or at the same time.” She says that while this may not happen often, “it’s what they talk about a lot”. In 2006, McCabe established The Five Project, to provide help and information to the autistic, their families and teachers.
“Just a few years ago, no one here knew what autism was,” says Ning Xianfang, who worked with an autistic child at a nursery school before travelling across the country to learn about educating children with autism. She opened a school in Changchun, because she knew many students had no place to study. “I use my own money and we get supplies – toys, books, clothes – from friends,” she says.
There are three teachers and six students who board at the school, one of whom pays no tuition because his mother, a migrant worker, is a single parent.
Ning says that if she had 10 students she might be able to break even. “I don’t know how long we can survive,” she adds.
The school is warm and plenty of sunshine pours through its wind- ows. Photographs on a bulletin board show young students smiling happily on outings, at birthday parties and at some of the twice-weekly yoga sessions.
“I do it because I love these children,” says Ning, with a wide smile. “What makes me happiest is when I see the children laughing inno- cently or when I see them making progress.”
One small boy clings to Ning’s shoulder as he sings love songs for visitors. The six students are all boys. A volunteer explains that boys are more likely to be autistic, but he also says, “China has a tradition of favouring boys in education, and so autistic girls are left at home.”
LI CHANGYOU OPENED A school for autistic children on the out- skirts of Beijing after parents at a previous school begged him for help. He had worked with special-needs students for many years, although he had no specific training. “Government schools won’t accept a lot of students – just the bright ones,” says Li. “Parents were often in tears, saying, ‘We can’t afford this. The cost is too high.'”
Parents lent him the money to launch the school in 2007 and he now takes care of some 40 disabled children. One student, about 12 years old, is brought into his office with a runny nose and Li grabs a tissue and wipes it for him. The boy is reluctant to speak. When asked how old he is, the boy replies: “I don’t know.” Li asks him: “What is one plus one?” He says: “I don’t know.”
Li says the boy had been enrolled in every other special-education school in Beijing before coming here three years ago. He says he has now mastered some basic living skills and his family are very pleased with his progress. As with the Changchun school for autistic children, Li runs his establishment on a shoestring. He says expenses are 50,000 yuan a month, with tuition income averaging 40,000 yuan a month.
“If we get a few more children next year, we might be able to get by,” he says. “If not, we’ll be in trouble.
“Sometimes I forget to eat,” says Li, adding that he’s never taken any salary and has not had a holiday in 10 years. He says he opened the school to serve the Communist Party, but that the government has not given him a single yuan.
“The government doesn’t feel this is their responsibility,” he says. “The problem is too big.”
Many of the programmes for the disabled that do exist are limited by a lack of experience in those implementing them. “I can’t think of one autism programme that is really efficient,” says a researcher studying autism in the mainland. “They don’t know what they’re doing. There is not enough training, too many students and no time for intervention.
“I’m not saying students are not learning anything, but they’re not learning nearly as much as they could be, and in some cases they’re being negatively affected,” she says.
Similar criticism is levelled at the CDPF, which is staffed by people who are generally not special-education professionals. As a result, says Yu, many parents of disabled children have lost faith in the organisation.
Handicapped children are also held back by their families. “Some parents who have handicapped children are afraid others will laugh at their son or daughter,” says Yu. “They think [hiding them away] is love, but this kind of love limits the child’s future.
“If a mother has a disabled child and doesn’t tell anyone, that means she’s not accepted this child. If she’s accepted the child, she’d let society know about it, and she’d provide a platform for the child to come into contact with society.”
That’s easier said than done, however, says Hu, whose autistic son eventually found the care he needed at Huiling, a private school that provides education and care for disabled people of all ages. “Chinese people don’t respect handicapped people. Some people even curse Xiaopeng. They don’t treat him like a person.”
Xiaopeng is now boarding at Huiling, returning home on the week- ends. However, the institution is being threatened with closure for improper registration. It’s extremely difficult to register NGOs in the mainland, so the school, like many other non-profit projects, has operated as a business.
When asked about her son’s future, Hu shakes her head. “Regarding when I’m old or after I pass away, I don’t even want to think about it. I just take things one day at a time,” she says. “I’ll look for a farm girl and as long as she’s good to him …” her voice trails off.
Bin says: “One of the biggest problems is the lack of freedom of association, in particular for those associations that are promoting and defending fundamental rights of the most vulnerable groups, such as the disabled. The other is the lack of freedom of expression?of disabled people. It’s really difficult for the disabled to found their own independent organisations to protect their rights. They lack their own true voice.”
Zhang Xizheng, who works with Lv Fei, says disabled people are being denied the chance to become independent, educated, employed and to take part in politics – leaving them powerless. “It’s a vicious circle,” he says. “The biggest voice should be coming from the disabled, but they are kept very quiet. They have no channel, no place to speak.”
Nonetheless, in recent months, with the help of the Yirenping Centre, disabled people have called for improved access facilities on the nation’s railways and have suggested the handicapped be given reserved rail ticket quotas. On December 16, 2011, the Ministry of Railways issued a notice requiring a certain number of tickets be set aside for disabled passengers, beginning in January. That same month, the ministry promised to improve services for disabled people in response to complaints from three disabled men.
IT IS LATE FEBRUARY and Zhang is heading home to celebrate his daughter’s fourth birthday. He decided against returning for Lunar New Year, the most important family holiday, because of the difficulty he has travelling in a crowd.
Zhang is worried about being late for the overnight train and asks a traffic warden for help lifting his heavy electric wheelchair on to a bus.
“Do you think there’s still a Lei Feng spirit here?” the warden asks angrily, referring to the PLA soldier popularised by the Communists in the 1960s for his selfless deeds. “There are no more Lei Fengs here. Who’s going to help you? Get out of here.”
Having heard the exchange, three passengers get off the bus, telling Zhang to pay no attention to the man, and help to lift the wheelchair onboard. At the railway station, staff help Zhang into a lift that goes down to platform level, but he has difficulty getting his wheelchair on to the train, and has to store it between carriages.
During the 10-hour train ride, he does not drink anything because he says it’s not convenient for him to use the toilet. In the Shaanxi capital of Yanan, he negotiates with a taxi driver to drive to his village, three hours away, and then has to ask the driver and a passer-by for help loading his wheelchair into the boot, which is accomplished with great difficulty. He doesn’t relieve himself until he’s half-way home, when we reach a petrol station and a quiet stretch of road. He has to do so sitting on the pavement because the public toilets are of the squat variety and impossible for him to use.
When he arrives home little Tianyu is happily surprised to see her father. She’s lying on a kang, a traditional brick-heated bed found in farm homes, with her leg bandaged. She fell the night before. Her father presses her leg to see if it’s broken, but he doesn’t think so.
“I’m happy to be home, but when I see my daughter like this, I feel sad,” says Zhang. “God is just not fair to us.”
Laying on the kang, he leans over and puts his face against hers as she sucks on a lollipop he brought her. He asks, “Did you miss me?” She puts her small hand on his and replies: “I missed you at New Year, when the fireworks were going off.”
“God is not fair to us,” he repeats later, frowning. “Tomorrow is her birthday and I wanted this to be a happy time. But when I see her like this, I cry inside because I can’t let her see me cry.”
Her grandmother is busy preparing steamed breads in the shape of animals for Tianyu’s birthday.
A traditional Chinese medicine practitioner stops by and examines Tianyu’s leg. He decides to put a herbal mixture on the swollen spot, but no attempt is made to take Tianyu to the hospital some 20 minutes away by car.
The discussion turns to Tianyu’s education, a big concern of Zhang. There’s no school in the village, which doesn’t have running water or paved roads, and so when she turns five, if a school in Yanan accepts her, a family member will have to move with her and rent an apartment in the city.
“If I’m still here, I’ll make sure she goes to school,” says her grandmother. “At that time we’ll see – there’s no special education school here. If they don’t accept her, I’ll have to think of a way.”
Zhang says he would like nothing more than to have his daughter by his side in Beijing, but he cannot take care of her.
“I love my daughter very much,” he says. “Whenever I’m worried, I think about her. I could never lose her. If I didn’t have my daughter, I might commit suicide.
“My dream is that she can be like other children, that she can go to university, and that she can have a stable life,” he says. “If that can happen, my mission will be completed. Then I can die in peace.”