China sees US as role model for integrating the disabled. Deng Xiaoping's son leads campaign to improve facilities
Briarcliff Manor, N.Y.
Deng Pufang sits quietly for a moment in his wheelchair, enjoying the wide view of wild woods from this attractive Westchester County home. Mr. Deng, the son of China's senior leader, Deng Xiaoping, is in the United States as the head of a Chinese delegation studying how the disabled are viewed and included - or not included - in society here.
The group is looking at how social, economic, educational, and medical policies affect the disabled. And Deng is clearly impressed with the private home he is visiting.
The one-story house with wide hallways, double doorways, and no steps was built to be accessible to people in wheelchairs. Sandra and Dick Parrino had it designed especially for their oldest son, Paul, a 21-year-old college student who has been a quadriplegic since he was a year old.
Mr. Deng has been paralyzed from the waist down since 1968, when he was attacked and forced out the window of a Beijing University dormitory by Red Guards during the Cultural Revolution. His father was in political disfavor at the time.
Today Deng is seen as a leader in the battle for disabled rights in China.
At the beginning of his three-week visit to the US, sponsored by the National Committee on United States-China Relations, Deng and his Chinese colleagues participated in a roundtable discussion on the disability movement with US leaders in the Parrino home.
There are an estimated 20 million people with disabilities in China. The China Fund for the Handicapped was formed in 1984, with the intent of assessing the needs of the disabled in China, assisting development of government legislation to protect and promote the interests of the disabled, to open up education and employment opportunities, and to advance research and rehabilitation.
Progress has been made on several fronts, say the Chinese delegates.
A sports association was established in 1983. A radio program on disability issues began this year, as a part of public education. The China Rehabilitation Research Center will study prevention and rehabilitation.
Since 1984, the fund has worked with several communities to break down physical barriers for disabled people, and the goal is being promoted throughout China.
But rehabilitation services in China are relatively new, and the need for trained professionals is great, says Susan R. Hammerman, secretary-general of Rehabilitation International.
The problems in the two countries, and throughout the world, are similar, Deng says through an interpreter. What is needed is understanding first, then respect, then concern, and finally help. If it is only the last two, he says, it is not help, but pity.
The Chinese listen intently, asking some questions as Lex Frieden, executive director of the National Council on the Handicapped (NCH), speaks of the changes in the past 30 years in the US. Much time, money, and personnel have been directed to developing institutional programs for the disabled.
The problem, says Mr. Frieden, who is disabled, is that the programs have been run mostly by professionals.
``We discovered the persons with disabilities sometimes had goals different than the institutions,'' Frieden says. ``We have begun to assert ourselves.''
Society, too often, tries to ``take care of'' the disabled. The role of the professional should evolve to one of facilitating, and the role of the disabled should evolve to one making decisions.
The federal government, says Frieden, spends $30 million on independent living centers for the disabled. It spends $60 billion for services for people with disabilities. More of that money spent on independent living programs could save money, he says.
Frieden lists the progress that has been made - opening up education, inclusion of the disabled in federal legislation, taking down barriers to access on city sidewalks or on public transportation.
The Parrino home, which will one day be Paul's, is an example of what can be done to help make a disabled person independent.
Paul has a voice activated computer and the outdoor swimming pool has a special lift so that the young man can enjoy the water.
But few disabled Americans have the money for such facilities on their own. As Mrs. Parrino, who is chairman of the NCH, points out, surveys have shown that poorer populations usually have a larger percentage of people with disabilities.
The Chinese ask questions about the definition of disabled, the numbers, what reforms have been made in recent years, whether criteria for state, federal, and local assistance are the same. They want to know how society views people with disabilities.
Samuel Anderson, a research scientist at Columbia University, says the most difficult kind of discrimination is ``the excessive preoccupation on the fact that I have a disability. I've had it 40 years. I don't think that much about it. But it is constantly being brought to my attention by excessive concern.''
There are a few moments confusion when Professor Anderson asks Deng for a better Chinese word for rehabilitation when talking about disabled people.
The Chinese word is ``kangfu.'' The Americans around the table look startled for a moment. The pronunciation to them sounds more like ``kungfu,'' a martial art popularized in United States through a television series.
Well, says one of the Chinese guests, we sometimes have to use that, too.
When American advocates warn that the Chinese should not follow the piecemeal example of the US, Deng answers, through an interpretor, that legislation often does happen piecemeal because in real life, that is how society encounters problems.
``It must take centuries, but if we talk about basic humanity and decent respect, we should struggle even in the absence of laws,'' Deng says.
Despite admiration from US leaders, Deng and his delegation are modest about the gains made in China. They describe the movement as part of the social and economic progress of China as a whole.
Liu Jing, deputy secretary-general of the China Fund and director of the China Rehabilitation Research Institute, says that their work will not be completed in a three- to five-year program, but is a long-term commitment.
The US, says Mr. Liu, is far advanced, but it makes a good model.
``What the United States is doing contributes to mankind,'' says Liu through an interpretor. ``What China does can contribute in the same global sense.''