Since April 1, 1996, Gao Yali has devoted herself to the Bo Ai Children's Rehabilitation Center, Shanghai's first private institution for children with cerebral palsy.
Combining rehabilitation treatment and special education, the center, which Gao established herself, is committed to serving cerebral palsy children with physical disabilities at the ages of three and four. It is mainly funded by social donations as well as fees charged for the children.
Gao's life changed forever in 1990, when she learned that her son had been born with cerebral palsy and her husband divorced her. In the period that followed, she was overwhelmed with desperation, confusion, and pain. Eventually, she found herself on death's door, so she had a talk with a psychological doctor.
Sports, social activities, and contact with animals are helpful for the children's limb exercise and brain growth.
"I have no effective medicine for you, Gao," the doctor said. "Only one person in the world can cure you."
"Who is it?"
At that moment, Gao realized that all successes and dreams come from the same place: a love for life.
The Bo Ai Children's Rehabilitation Center was thus founded, with which Gao spreads her love and concern from her own son to every cerebral palsy child in the world.
In the midst of the fast-paced throb of the international metropolis of Shanghai there exists on a quiet little alleyway a school for special needs children that is well-known throughout the city. All children at this school are suffering cerebral palsy. They are unable to walk, sit or even crawl, their limbs rigid. They have different problems in relation to language, sight, intellectual development and so on. All of this tells us that this is a group of children with multiple disabilities.
We at the school receive an endless flow of visitors. Every time a visitor sees the children struggling to crawl on the ground, or sees the staff gently encouraging the children to move their tiny feet ahead just one tiny inch at a time, the visitor will ask with amazement: "How did you end up doing this kind of work? Why are you doing this kind of work?" What should be understood is that in 1996 our school was the first and only private center in Shanghai specializing in the treatment of cerebral palsy children. At that time Chinese society was totally ignorant about rehabilitation or about children with cerebral palsy. These questions always take my memory back to the summer of 1990.
Before 1990 I worked for an import and export firm in Shanghai. This was considered a very good job at the time. However, something completely unexpected was about to throw my life and my career into turmoil. In the summer of 1990 I gave birth to my son. Like any other mother, I was filled with joy and excitement. However, I was completely unaware of the tragedy that was awaiting me. At seven months of age my son was found to be unable to crawl or sit, and was diagnosed with cerebral palsy.
I was shattered.
I felt empty, and the pain was so intense that it numbed my heart. My hopes and aspirations for my child all vanished. There only remained a sense of hopelessness and pain. It was only after a long period of introspection that I decided to do everything that I possibly could to save my child from a bleak future and to do everything in my power to minimize his disabilities. It was at this time that I began my long journey into uncharted waters. I tried nearly every hospital in Shanghai. With only very minor results, I was forced to other places in China to look for medical treatment. I spent four years travelling half of the country, including the large cities of Changchun, Beijing, Nanjing, Wuhan, and Shijiazhuang.
As time slipped away I had to return to work. I came up with a plan: to put my son in a kindergarten during the day while I went to work and then help him exercise in the evenings. Although I tried, this plan could not work, and I once again lost hope. Coincidentally, I learned from a neighbor that a woman at her factory had a child with cerebral palsy and that no kindergarten accepted the child. So the woman had to take her child to work with her every day. She had to be with him all the time as he grew up. Once again I was shocked. Having spent several years desperately trying to find a solution for my son's condition, I had gained a relative understanding of the chronic condition of cerebral palsy.
There is actually no effective cure for cerebral palsy. For many years now researchers have been working hard to try to find out how to help this special group of children and their families. Cerebral palsy children are like normal children in that they need encouragement and stimulation right from birth. Early intervention can minimize the contractors and bad posture that these children can develop and can accelerate speech and intellectual development so that they are more likely to reach their full potential. Therefore, childhood is the key time to implement various programs such as speech therapy, occupational therapy, physical therapy and education. At present, we face the following challenges.
Firstly, our rehabilitation center as well as general standards are unable to adequately fulfill the varying needs of these children.
Secondly, rehabilitation for cerebral palsy children is always short-term and not continuous as there must be a family member or person who can be dedicated full-time to the care of the child. For example, they are needed for visits to the rehabilitation center or hospital.
Thirdly, there are very few kindergartens that accept physically disabled children. After treatment at a hospital or rehabilitation center, most cerebral palsy children have to stay at home to be cared for by their grandparents or a nanny. (Of course, such people are not skilled or experienced in caring for cerebral palsy children.) Because of such limitations, cerebral palsy children lose their best opportunity for rehabilitation.
Enabling cerebral palsy children to live in special needs boarding schools would greatly assist in implementing early intervention programs, which would in turn create a solid foundation for their physical, intellectual, and language development as well as preventing or minimizing any psychological problems they might have. The idea of establishing such a special needs school gradually took shape in my mind.
As I was beginning to make plans for a special needs school, I learned from a friend that the Hong Kong Rehabilitation Organization under, the World Health Organization (WHO), and China's Ministry of Civil Affairs were going to hold the first National Training Workshop for Children's Rehabilitation in Hebei Province. I immediately left to attend the workshop, at my own expense. There I met a Canadian occupational therapist, Sheila Purves, and an Irish instructor, Joanne O'Connor, as well as child welfare workers from all parts of China. From O'Connor I borrowed two video instructional tapes. From these tapes I first gained a basic understanding of conductive education. Through these tapes I was able to observe the experience of several decades of conductive education programs with cerebral palsy children in Europe and Hong Kong. With the skills I also had attained from my several years of visiting rehabilitation centers around China, I was able to form my own concept of a rehabilitation center. I was slowly gaining confidence.
In May 1995, I began to realize my dream. I used more than 30,000 yuan of my own savings and borrowed more than that from close friends in order to rent a small, disused, two-story building in an urban district. I spent two months renovating. Just as the renovation was being finished, the landlord advised me that he had to rent the building to several companies instead! When I heard this news, I was devastated. Fortunately the landlord was kind-hearted. When he understood my situation, he not only compensated me in total but also charged me an even lower rent on another building where our rehabilitation center is now located (80,000 yuan a year). I can't describe how grateful I was because not only is the current building more spacious, it is also more suited to the children's needs. What looked like a bleak situation turned out very well indeed. The place is larger and the compensation money helped start the center.
I went through many different avenues and finally found two nurses, a doctor, a teacher, and several laid-off workers. I put the seven staff members through a brief training program. On April 1, 1996, I obtained a government license for the center and thus the Bo Ai Children's Rehabilitation Center was officially established.
After establishing the center I faced bigger problems: a lack of skilled workers, professional expertise, funds, and even community understanding. I had to blindly feel my way through these obstacles. At that time physiotherapy, occupational therapy, speech therapy and similar kinds of disciplines were not offered at Chinese universities. There really was no expertise in relation to rehabilitation. In addition, hospitals had no neurologists or neurosurgeons and very few people skilled in physical rehabilitation. In addition, there was no in-depth research into child psychology, children's education, physical rehabilitation, music therapy, etc.
Through reading Chinese and foreign materials on child rehabilitation, using the knowledge I had gained at the workshop in Hebei, viewing the foreign instructional videos I'd been given, and using the wealth of experience of Chinese provincial-level rehabilitation centers, I gradually developed a training plan for our rehabilitation center. As we were the first private cerebral palsy center in Shanghai, numerous newspapers and TV stations came to report on our center. The Shanghai government and citizens, as well as many foreign friends, provided us with different kinds of help.
A foreign lawyer working in Shanghai, Andrew Godwin, read about our story in a local newspaper. He introduced his mother to us-Barbara Godwin, a physiotherapist with more than forty years of experience treating cerebral palsy children-who was visiting Shanghai at that time. Not long afterwards he funded me on a trip to study cerebral palsy centers in Melbourne, Australia. In Melbourne, I visited ten special needs centers and schools for children, as well as a workshop for adults with cerebral palsy. I was able to observe modern rehabilitation facilities; learn about the latest theories in relation to handicapped children; witness the community support for, and technological advances in, this area; and how successful the result of all this was. When I passed through Hong Kong on the way back to Shanghai I had arranged with the WHO's Hong Kong Rehabilitation Organization to visit many special needs schools and rehabilitation centers in Hong Kong. The opportunity to observe cerebral palsy centers overseas made me see the significant gap between where we were and where other countries were. I also realized the great responsibility that I had and the difficult road that lay ahead. I was inspired to work hard to match, if not exceed, what others had done in this area.
Everything good in this world is the result of human wisdom and diligence. Moreover, in the end, humanity needs to resolve its own problems. The best way is for individuals to take initiative of their own destiny and challenges.
I brought back with me new concepts and threw myself into working hard and furiously.
There have been rapid changes in Shanghai during the past few years. There has also been a lot of progress in the field of child rehabilitation. There has been a gradual but significantly greater understanding of cerebral palsy in the general population and a greater understanding of the need for special needs organizations. Beginning in an environment of ignorance, we have enabled people to accept, and moreover to help, cerebral palsy children.
A few kindergartens and schools have now established classes for special needs children, and there are now special needs schools that have classes for cerebral palsy children. The children's hospitals have also set up rehabilitation departments. Doctors are accepting physical rehabilitation theories and are in the process of implementing rehabilitation skills in relation to handicapped children. There is increasing acceptance of educational theories, and my center's work is also slowly gaining society's acceptance.
Over the last six years, around 300 cerebral palsy children have received treatment and education at my center. Among them, 40 children are now able to walk and therefore are able to attend supporting kindergartens and primary schools. The oldest child at my center has already been accepted into a middle school. To see a child who has had to be carried into the center now stand up or walk independently, or see a magnificent smile on the face of a child at my center, or see the sparkling tears of joy in a parent's eyes-these are my greatest joys. At these moments I know it was all worth it.
Even though we have made the first steps in the area of rehabilitating handicapped children and have attracted special attention from the community, it has been extremely difficult for a private center such as ours to develop. It has been difficult because China itself is a developing country; the level of the entire social welfare system in China is still not high; and the treatment of cerebral palsy children has only just begun. There are many gaps in knowledge to be filled. We need to consolidate what we know, we need funding, we need specialist staff and we need community awareness and acceptance.
Through my efforts with cerebral palsy children I have lost my former job and my marriage. However, there are many things for which I am grateful. Bo Ai Children's Rehabilitation Center has helped so many children and their families. The center is dedicated to helping these children. I know that it has been much better to have a center like this than not. And the success of Bo Ai will mean that other such centers can be established. Right now in Shanghai other centers like mine are being established. Future generations of cerebral palsy children will certainly be more fortunate than my son was.
I often think that a person's life is so temporary, fragile, and insignificant in the history of nature. If a person is able in his or her life's journey to bring benefit to others, or to benefit society in some way, then lives can be fulfilling and powerful, worthwhile and blessed.
The rehabilitation center offers diversified, effective training courses, which were developed by Gao based on her visits to foreign rehabilitation establishments.
Bo Ai Children's Rehabilitation Center
Address: No. 20, Alley 101, Xiaomuqiao Road, Xuhui District, Shanghai 200032
Hotline: 021-64165239 or 64184930
(China Pictorial June 25, 2004)