artcile: In China, Grass-Roots Groups Stretch Limits on Activism (Autism)

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Wall Street Journal

MANDARIN LESSON

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. "

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