Xiao Chen's emotions are a rollercoaster of excitement and dread. "Tomorrow is my first day back to school! What will it be like?" It has been eight years since he last wore a school uniform and answered questions in class. Xiao Chen first noticed it in second grade. He could only read the board if he did not look directly at it. As the patch of blackness spread across his visual field, he was no longer able to pretend. His world of light and color was becoming one of taste, sound and touch. Luckily, Xiao Chen already had a basis for many learning concepts before he became blind. Students being accepted into the Chinese government schools for the visually impaired must already be able to live independently in the dormitory. This often rules out children who were born blind, whose parents did not have the skills to train them properly, who are dependant on others for assistance or have other learning issues.
The purpose of school is to teach the children Braille, music and other subjects appropriate for blind persons. Xiao Chen has already been told that he will study to be a masseuse. Why the eight year wait? Although government schools for the disabled are tuition free, the cost of traveling nine hours by train as well as room and board are beyond what his parents can afford. A businessman in his city heard of his plight and agreed to sponsor Xiao Chen for the first year. If he proves to be a good student, the financial support will continue. Why, in a country where relationships are strictly utilitarian, would a businessman "invest" in someone with no guanxi or connections? The businessman studied overseas where his life was transformed. Sponsoring Xiao Chen is an example of how one lives when he or she understands that all people have intrinsic value regardless of their ability or disability.
When considering a country as large and diverse as China, one must expect to see a wide variety in the situations of persons with disabilities. Some, like Xiao Chen have hope. Others have less fortunate circumstances. International pressures have propelled China policy towards providing services for their disabled. There are laws requiring schools to accept and companies to hire disabled persons. Wheelchair ramps make rolling through the Forbidden City possible. However, laws and ramps are only part of the solution.
Zhang Qi Long used to have a dream of one day visiting the Forbidden City. Now it is just one of the many dreams he let die. Since he broke his back as a teen, he has only left his home twice for medical emergencies. His level of injury is L2 meaning he can use his arms to lift himself out of bed and onto a stool with wheels which he uses to pull himself around his apartment. There is a wheelchair folded up in the corner. It was donated by a Western NGO, but his apartment is so small that once it is opened he is unable to move about. That is not even mentioning the four flights of stairs followed by 80 meters of uneven sidewalk he would need to travel just to get to his front gate. Life has simply stopped for Zhang. No hope for a job outside his home. No more dreams of a wife and family unless he marries a woman who is also disabled. Isolation. What a different story this would be if only people who really cared chose to enter into his life; people who could creatively bring relationship and meaning back into the four walls that Zhang considers his prison.
These societal reactions, though disappointing, actually closely resemble reactions of persons in the West only thirty years ago. Most Chinese people have never seen a disabled person in any other role then that of beggar. True, they see Deng Pu Fang on TV. The son of Deng Xiao Ping, the younger Deng is the primary statesman for disabled persons and their rights in China from his wheelchair. Television may touch the mind, but it takes a lot more to change an attitude or belief. That is why so many children with physical deformities including missing digits, large birth marks, cataracts or webbed toes are abandoned to orphanages every year.
Ma Xiao Chun, affectionately called Chun Chun, has bilateral clubbed feet. It only took one look from his birth father to seal Chun Chun's fate. IT would bring bad luck on their home and their crops. Even a rumor of ITs existence would destroy any chance that ITs cousins could get married. He did not care how IT was disposed of, as long as no one saw IT. Chun Chun's mother had never cried so much in all her life. Carefully she fed him all that evening, dressed him in the new clothes she had prepared for him, wrapped him in a warm blanket and just before daybreak left Chun Chun on the doorstep of the local police station. The police brought Chun Chun to the orphanage.
That same month they also delivered to the orphanage Wang Yuan, affectionately called Yuan Yuan. She was born with a cleft lip and palate. If it had not been for a Western English teacher who volunteered at the orphanage, Yuan Yuan would not have survived. This teacher, along with some of her Chinese students, came every day to feed her. Once she had gained enough weight, Yuan Yuan was able to get a lip repair surgery at the local hospital. A couple of years later, she traveled for two days by train for her palate repair surgery. Chun Chun traveled with her, but the doctors in the big city said they did not have any surgery that could help straighten his legs. Soon afterward, the teacher returned to her home country, but some of her students keep visiting the children. They sing happy songs about love and a Father. Chun Chun knows he is loved by these students but also knows that if he becomes too close to them they will probably go away. Need proof? Yuan Yuan left only a few months ago with her new parents from Australia. The caregivers say that Yuan Yuan will have a chance at real life. "What is real life?" wonders Chun Chun.
The impact of disability on a family is difficult no matter what country they live in. Guilt, anger, and hopelessness are just a few issues that are compounded by superstition and social isolation. Add to this mix some very real problems and you are looking at a family in distress. Gone is the future university graduate who will support them in their old age. With no brothers or sisters, who will care for this child once the parents are too old? The only answer held out to these desperate parents is to find a cure, no matter what the cost. Running from one hospital to another, they become prey to unethical physicians willing to do unnecessary surgery to pad their salary. Others honestly, but erroneously, believe that the medications and treatments prescribed will benefit the child.
Li Meng Lin is one such parent. When her son could not sit up on his first birthday, the doctors said it was cerebral palsy. As they advised, she quit her job to seek a cure. Two years later, all the family savings are now depleted, her son still cannot sit up but has an acute fear of strangers, and her husband has a mistress. One day, Mrs. Li, carrying her son, pushes onto a crowded bus after a long morning at Children's Hospital. A woman on the bus gets up and gives her a seat. Sitting down Mrs. Li braces herself for the usual barrage of hurtful questions about her son. Instead, the woman simply makes casual small talk. Looking up past her own lap, Mrs. Li notices that the woman's son is rocking back and forth and making twittering noises. "My son is autistic," is the response to her questioning look. Mrs. Li discovers that this woman is on her way to a parent support group. It is being held in the home of a mother who gave birth to a daughter with Down's syndrome while she and her husband were working in Hong Kong. There they had experienced acceptance and love from a similar parent support group. Now that they are back in their home town, she is helping other parents of disabled children find friendship, encouragement and life changing hope.
China is building a good groundwork of policy and structure to serve the needs of its disabled population. Although an important first step, without the transformation of societal attitudes, there will be no significant change in individual lives. The answer? People with a vision of "how it can be" need to model these new concepts to the people around them. Individuals with hope should actively build relationships and transform lives no matter what position they find themselves in. Perhaps they can use their Western education to influence the ethics and practices in everything from medicine and education to architecture and city planning. Others may choose to visit "that family with the weird child" in their apartment complex and provide a listening ear to the mother. Volunteering? Counseling? Becoming the bridge between persons with funds and worthy causes in need of support? Reaching out to meet felt needs until you are given permission to start dealing with real inner needs? For every disabled person in China there is a unique need and situation. People with hope need to creatively and lovingly seek to be His hands and His feet to those whose hands and feet may not work so well.
Image credit: Special Education School by kvitlauk via Flickr.