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朋友转过来一篇华儿街日报上的文章,一看是讲马女侠的,原来是女侠又有行动了,准备买地建果园,看来是建"堪纳园"了.马女侠就是厉害,排起毒来能请来Dr.Shaw,现在又干起实业.在咱们星爸星妈里面,绝对是阴盛阳衰.网上一吵架,沟沟隘隘里的男人都出来了,真干事的时候都是些妇女们忙活.惭愧!
In China, Grass-Roots Groups
Stretch Limits on Activism
A Mother Leads Quest
To School Autistic Kids;
Selling the Family Home
By IAN JOHNSON
January 9, 2008; Page A1
TAIZHOU, China -- For nearly two years, Ma Chen and a group of her friends have run a volunteer effort to help children with autism. They opened three schools, raised $200,000 and brought in outside experts. Now the 35-year-old mother of an autistic girl wants to turn an overgrown plot of land into a working farm for the children when they grow up.
"We need to grow in size," says Ms. Ma, as she tramps through a tangle of orange trees and creeping vines.
But her ambitious goals will require a bigger, better-organized charity -- and that is propelling her into delicate territory. She is part of a grass-roots movement that is testing China's tolerance of groups that operate independent of official supervision.
The outcome has important implications for China. Independent centers of power, such as charities and advocacy groups, have begun popping up here in response to social problems. Beijing is gradually permitting nongovernmental organizations, but it restricts their scope. The country's leadership worries that too much civil society could stir up conflict, challenge its grip and put at risk the stability that has underpinned 25 years of fast economic growth.
Ms. Ma's group has been helped by state policies that for the first time recognize intellectual disabilities as a problem. This was highlighted in October, when Chinese President Hu Jintao attended the Special Olympics in Shanghai.
Ms. Ma, a long-haired woman who wears granny glasses perched on the end of her nose, isn't comfortable being pegged a social activist. Her real interest is engineering. She and her husband met at university, where they studied underwater acoustics. They married and got jobs at a defense contractor in Hangzhou, a tourist center of 4 million known for its scenic West Lake and green-tea plantations. In 2000, their daughter, Miao, was born.
But after two years, Miao seemed unable to interact with people. She could say only a few words and threw tantrums, hitting herself violently. The family went from hospital to hospital and finally found one able to make the diagnosis: autism.
Autism is a neurological disorder that affects the ability to communicate and interact. It can include severely restricted and repetitive behavior, as well as milder disorders such as Asperger's syndrome. Those severely afflicted need help in most aspects of daily life. The China Disabled Persons' Federation estimates that 104,000 children in China have learning disabilities, mostly autism, but based on surveys in other countries, the number is probably many times higher.
In China, as in many developing countries, disabilities like autism were long ignored or considered taboo. According to traditional views, birth defects were a sign that parents hadn't lived a virtuous life. Some mentally disabled people found work in the fields, but often were shut in to spare the clan a loss of face.
That has led to a dearth of knowledge on the condition. After Miao was diagnosed, Ms. Ma couldn't get an answer on what autism was or how to treat it. So she went online and discovered two schools for autistic children, one in Beijing and one in Qingdao. Ms. Ma quit her job and spent a year taking Miao to the two schools and to numerous private workshops the family paid for out of pocket.
She soon found that mainstream schools didn't allow even marginally autistic children, who often have short attention spans and need more intensive teaching. She decided she'd have to start her own school. In 2003, she went to register it with the government-run China Disabled Persons' Federation. It controls which charities for the disabled may be legally established.
The federation was founded to aid the physically challenged and only slowly championed the intellectually disabled. When Ms. Ma tried to register her school as a nonprofit, the federation said autism wasn't a recognized illness. Unable to operate legally, she closed her school.
Three years later, she reapplied. By then, autism was a recognized disorder. Although the federation had plans to set up its own schools for autism, officials said they could accept private outfits getting involved with teaching the disabled. In 2006, the federation's Hangzhou branch approved Ms. Ma's "Carnation Children's Rehabilitation Center."
Then came the next problem: money. To get the school off the ground, the family took drastic measures. They sold their apartment and emptied their savings -- in all, a loss of $100,000 in assets. The family now lives in a sparsely furnished rental in a grimy part of Hangzhou, without a car, stereo or any of the status symbols of China's middle class.
Ms. Ma's situation is typical of parents with autistic children, says Theresa Lu, a retired expert on autism from Taiwan who donates her time at schools in China.
"These schools are so fragile," Ms. Lu says. "I have seen so many go out of business. The parents just sell everything they have to pay for the schools until they run out of money and energy. Then they close."
Ms. Ma, however, began to tap into China's new prosperity. The country's economic rise has created tremendous wealth, but few outlets for charity. A handful of official charities exist, but are widely seen as arms of the government and excite little passion. Without a legal framework to allow private charities, philanthropy in China has been stunted.
So when Ms. Ma's quest spread by word of mouth, something unusual happened: Parents in Hangzhou, even some without autistic children, stepped forward.
"I just thought that here was something that needed our help," says Xu Wei, a 38-year-old housewife whose husband works for Hitachi Medical Corp. Their daughter isn't autistic, but Ms. Xu says her heart broke when she saw the children with no place to go. "It is something different to do, something with meaning."
Ms. Xu's family and three other families donated about $30,000 each, a large contribution by Chinese standards. They also gave their time; Ms. Xu, for example, is a former bank accountant who now handles the school's books.
Buoyed by their support, Ms. Ma began to recruit teachers. Parents of other children with autism began to turn to her, hoping they'd get a better education for their children. The disabled persons' federation is starting its own schools, but runs them for profit and so has higher student-teacher ratios.
Ms. Ma's school opened in April 2006. Soon after, she opened a second school, in Taizhou, and then last August, another one in her hometown. Enrollment fluctuates, but there are usually a total of about 100 students.
In October, Ms. Ma and her backers gathered to hold an unofficial board meeting in Taizhou and to survey the farm for sale. They timed their visit to coincide with a training class for teachers at the Taizhou school held by Ms. Lu, the Taiwanese volunteer. The 72-year-old spends several months a year traveling to mainland China to train teachers and parents.
Without a car, Ms. Ma and Miao made their way to Taizhou by bus. Ms. Ma worried for days about the four-hour trip. Like many autistic children, 7-year-old Miao dislikes enclosed spaces and can have fits of anger when cooped up. So Ms. Ma talked carefully to Miao about the trip, warning her what lay ahead. During the ride she stroked Miao, whispered encouragement, pointed to things outside and played games with her.
The effort paid off; only once did Miao jump up in frustration and rattle the seat of the passenger in front of her. Ms. Ma considered apologizing but reasoned that most people don't know what autism is. She smiled at the young man who turned around to look.
"He thinks Miao is a spoiled child and I'm a bad mother," Ms. Ma said, as the man turned away. "But what he doesn't realize is Miao's progress. Before the school opened, she couldn't sit still like this."
Finally, Taizhou. The city lies on a strip between the East China Sea and mountains that used to isolate this part of the country. Over the centuries, the seclusion forged a strongly individualistic streak; locals embraced China's economic reforms when they were launched in the late 1970s. The coast is now dotted with hundreds of family-run businesses, making everything from bra hooks to wooden toys.
The prosperity is important to Ms. Ma's work. Her schools, and others like them, get no government money. They survive by charging between $200 and $300 in monthly tuition. It is a staggering amount for China, even in wealthy provinces like Zhejiang, where the annual per-capita income for urban residents in 2006 was $2,400.
A few poor parents are given free tuition, but even middle-class families can't afford more than a few months of classes. Typically, a family enrolls a child for several months and one family member comes to learn how to communicate better with the child. Family members learn how to stop the children from hurting themselves and help them express themselves so they feel less frustrated.
The parents also learn that their child isn't being naughty -- and, hopefully, to stop beating their child, still a common reaction to an autistic child. Some dream their child will learn to read and write and join a regular elementary school. But most can afford classes just long enough to deal with the child's most pressing problems.
The day after arriving in Taizhou, Ms. Ma and her backers met at the school. As they prepared to hold a training session, Ms. Lu surveyed the 20 teachers and whispered to Ms. Ma: "There are too many teachers here. You only have 26 children. You'll go bankrupt."
Her schools lose about $10,000 a year. But Ms. Ma has little choice. China, a nation of 1.3 billion, trains fewer than 100 special-education teachers each year. This year, a class of 30, specialized in autism, graduated. The rest are trained in education for the blind, deaf and those with other impairments. Ms. Ma tries to hire the specialists but their numbers are so limited that she has to train most of her teachers. She trains teachers for six months. Even then, they still can't handle more than one or two autistic children at a time, she says.
So the schooling has to be especially intensive. The bottom line: Ms. Ma's schools have about a one-to-one student-teacher ratio, making it almost impossible to break even.
The next day, Ms. Ma, Ms. Lu and the parents surveyed the farm on the outskirts of Taizhou, then went to a small restaurant to discuss plans. The group agreed the disabled persons federation is better than before, but too passive and too concerned about money. One of Ms. Ma's schools is located in buildings owned and rented out by the federation, which the parents think isn't right.
"You can say there's progress because now they don't block us," Ms. Ma said over bites of shrimp and cuttlefish. "But I'll put it to you this way: They're our landlords. You can say, well, the rent is lower than it might be. That's true. But they still make money off us."
A spokesman for the federation said he couldn't comment on its financial arrangements with Ms. Ma's school.
Ms. Ma would like to set up a provincial or national parents' association. A bigger group would mean a more stable number of students and more money to train teachers. Eventually, they could raise the student-teacher ratio to 2 to 1 -- better than the government schools' ratio of about 6 to 1 -- but enough to break even. A bigger pool would also make it more likely to find enough parents to purchase the farm.
Last year, parents in Beijing tried to establish just such a national federation but were denied registration by the Ministry of Civil Affairs. The ministry declined to comment but a spokeswoman noted it is setting up schools for the autistic.
Ms. Ma's group would like to tap more efficiently into China's growing wealth. It hopes to set up a foundation where donations could be tax-free -- an important incentive because China is starting to tax the wealthy.
For now, a lack of legislation makes this impossible, although China's parliament may take up a charities law at its annual session in March. It shelved a draft bill at the 2006 session.
"There's no doubt there's progress, but it's slower than it might be," says Liu Hongchuan, a Beijing-based lawyer with an autistic child. "President Hu's visit [to the Special Olympics] shows that awareness is up, which is very important. But what these groups lack is a stable legal platform."
Before lunch broke up, Ms. Ma's benefactors agreed to cover the schools' estimated $10,000 in losses this year. They could end the losses by cutting out the few indigent families and upping the student-teacher ratio. But instead they opted to sink more money into the schools.
On the way back to town, they drove under a banner heralding the Special Olympics: "Pay more attention to and develop the affairs of the disabled."
"China is [paying more attention]," Ms. Ma said, nodding at the banner. "But the thing is, I'm not interested in organizations or networks. I want this [farm] so my daughter will have a place to live when we're dead."
--Ellen Zhu in Shanghai contributed to this article.
Write to Ian Johnson at ian.johnson@wsj.com |
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