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December 14, 2010

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How one woman mothers the disabled

CHINA has more than 83 million people with disabilities and far too few resources to help them. One woman struggles to operate The Dream of Home in her flat for 20 needy children and adults.

Sun Huiping has an unbelievably big family in a country that asks most couples to have only one child. She has 20 "children," with the eldest aged 30.

All the "children," as Sun calls them, in this unusual family in the northern China port city of Tianjin suffer from cerebral palsy or autism.

Sun, now in her 50s, opened a 24-hour special education center, The Dream of Home, in her own apartment to train and take care of disabled children in 1990, after being laid off from a kindergarten.

Her eldest "child" Liu Jian has been living in Sun's home for more than 18 years.

Over the past 20 years, the center has received more than 100 children suffering from autism, cerebral palsy and mental retardation.

"The children need 24-hour care, especially the autistic ones who often behave aggressively," says Sun.

In The Dream of Home, the paint on the wall is peeling. Simple wooden doors are broken with several holes made by the autistic children. Piles of clothes lie on the floor in the wash room that smells of urine.

A television, a fridge, a washing machine and an air-conditioner are the only pieces of furniture. Iron beds are assembled every evening for sleeping. There are a few donated cabinets and tables.

"Some suffer from urine incontinence. Over the past 20 years, five washing machines have been run down," says Sun.

The so-called "autistic spectrum disorder" ranges from mild Asperger's syndrome to severe mental retardation and social disability. There is no cure or widely accepted treatment for the conditions.

Chinese came to know the disease in 1982. Some 500,000 or more people are estimated to suffer from autism in China.

Sun first met a disabled kid when she worked in a kindergarten in the 1980s.

"He suffered a lot from cerebral palsy and could never walk. When I was laid off, I decided to help this group of children like they were my own," Sun says.

In The Dream of Home, there are both tantrums and silence. Some autistic people are easily angered and have limited verbal communication ability. Severe cerebral palsy patients are incapacitated and sit in silence most of the time.

Sun says her previous apartment was only 30 square meters. She and her husband have been sleeping on the floor since 1990 while more than a dozen disabled children and her only son slept on beds.

Now, 20 disabled people live in her 120-square-meter home. They are aged 7 to 30 years. They are nursed by Sun, Sun's 31-year-old son and a paid nanny. On weekends, or sometimes once a month, their real family members pick them up and take them out.

The job can be dangerous at times. According to Sun, one autistic patient turned on the gas cooker at midnight to see "the lovely flame."

Money is another problem.

Running The Dream of Home costs 15,000 yuan (US$2,500) a month, however, Sun charges less than 1,000 yuan for the 24-hour nursing.

Despite difficulties, she persists.

"If it was for money, I would not do this," says Sun. "This kind of family usually has a second child and at least one parent has to give up work to nurse the disabled, so their economic situation cannot be good."

Some foreign agencies with a missionary background once offered financial aid to Sun but she refused.

"I just want to keep it a pure place for welfare without other involvements," Sun says.

She keeps training the little kids to use a bedpan and the older ones to dress and eat by themselves.

"Early diagnosis is crucial in helping these children acquire basic language and social skills," Sun says.

"The key," she adds, "is to train them to understand others and to communicate by any means they can to convey their wishes."

In March of 2009, Sun was diagnosed with lung cancer.

"I collapsed and shouted: 'Why the hell am I suffering from this incurable disease'?" Sun recalls.

The Dream of Home is having difficulties in carrying on at this time - the occasional donation is just a drop in the bucket.

"It can be tough going but everyone has to confront some hardship, either this or that. This is life," Sun says.

Sun's only son, 31-year-old Xu, who had been working in Beijing for eight years, resigned from his job and returned to Tianjin to nurse the disabled full-time.

"It's my mother's welfare career, and I am responsible to keep it going for both my family and the families of the disabled," Xu says.

China has about 83 million people with disabilities, according to a census in 2007. The central government has earmarked 711 million yuan to help rehabilitate handicapped children in the three years from 2009 to 2011.

Sun, however, still has another concern. She says she does not know how long she can continue to take care of her "children," but she has one wish.

"I want my private special education center registered so it can enjoy the same preferential policies as state-owned schools and welfare agencies," she says. "With these policies, we can make the family bigger. After all, there are many people to be helped."


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