Amity’s Polio Project: Brand New Hope for the Disabled

by Wu An An and Li Xue

On December 26th 2008, at a restaurant near the Amity office, four university students and Amity staff were gathering for a reunion. The students were special guests of Amity – “children” from the polio project. Tan Lei, a second year medical student at Nanjing Chinese Medical University, was telling everyone how he had managed to get here by taxi with a wheelchair: “The taxi driver stopped when I waved, I got into the car on my own and he helped to put the chair in the back.” The boys and girls were very happy to see each other and exchange their experiences in the new city. Amity staff had brought old photos from the time 10 years ago. Looking at the pictures taken when they were still children with crutches, the young people started to recall the old days. Time flashes by. Everything seemed to have happened only yesterday.

In 1992, Mr Zhang, the retired deputy director of the Pizhou Public Health Bureau, came to Amity for help, after a request of his to help polio-infected children had been turned down by the Provincial Public Health Department and the Red Cross. The 60-year-old man informed Amity that there were 648 children infected with polio, aged between 1 and 3, scattered around different villages in the Pizhou area. Amity staff immediately took action and paid a visit to Pizhou. The scenes were shocking. The children were crawling on the floor. When their parents picked them up, the children’s legs were limp as noodles. These children had got infected during the polio epidemic of 1989. Most of their parents were farmers, lacking both money and knowledge to help a paralyzed child. Some parents had traveled around China and spent all their savings in search of help, but came back disappointed. Moreover, the local government at the time lacked the experience and financial means to help them.

The Amity polio project, with support from the Norwegian Mission Alliance (NMA), started to meet the needs of these families. The project lasted for 13 years. During a 3-year period it was run as a pilot project; two 5-year phases followed when the project was officially implemented. A resource center, called the New Hope Center, was established for all the “polio children” and their families. Amity cooperated with both local and provincial-level hospitals in Nanjing to provide surgery, physical therapy and occupational therapy for the children.

Even more importantly, a Community Based Rehabilitation (CBR) team was established to offer orthotics services, including the manufacturing and repairing of braces, wheelchairs and other mobility aids. The rehab workers visit every family at least twice a year and offer services accordingly. Scholarships of RMB 200 (US$ 29) per year for 522 children in financial need were part of the project, too. 96 seriously paralyzed children received 9 years of compulsory education right at the center. The other 552 children all attended local community schools. The project helped the community primary schools to set up barrier-free facilities and organized trainings for teachers. In October 2008, the project underwent a final evaluation. A group of experts assessed it from medical, educational, sociological and NGO-managerial perspectives.

During the final evaluation field trip in October 2008, Tan Lei’s mother happened to be one of the interviewees. She tried to recall the name of the local CBR worker: “Xiao Wang something,” she speculated, “it’s been too long, I cannot remember his full name. He came quite often while Tan Lei was still at home.” The project provided support to Tan Lei’s family so they were able to pave the front yard with cement for easy access by wheelchair. Tan Lei’s mother is now very proud of all her children, three of whom went to university. “Tan Lei set up a very good example for his sisters. His younger sister used to ride her bicycle to take him to school every day.”

The family’s situation kept improving during those 15 years. Besides the scholarship for Tan Lei, the family received a microloan through this project. The annual amount of CNY 5,000 enabled them to start a chicken raising business, which has been growing ever since. A second big hen-coop for 2,000 chickens was built last year. Asked about other disabled children in the community, Tan Lei’s mother wasn’t aware that her own experience with Tan Lei could be an important resource for her neighbors. But whenever somebody came to ask her about disability, she would tell them to turn to the New Hope Center.

All the children have grown up by now. Among the 648 “polio children” in 2008, 5 were university graduates, 105 university students, most of the others were in high school, vocational school or middle school. At present the biggest challenge is finding employment for these children – the final test of social acceptance. The center organized trainings for “polio children” with different interests, including music, art and sports, etc. In 2008, 10 athletes from the New Hope Center participated in the Beijing Paralympics and won 6 gold medals, 2 silver medals and 1 bronze medal.

In order to help more children to become independent, microloans are now given to the children themselves. Mao Yanyan opened her own barber shop with the help of such a loan. Liu Erhu happily showed everyone his electric motorcycle repair shop and demonstrated his swift moves. Another group of 11 children, lead by Cao Hailiang, started their own handicraft business. They rented a big studio, where they work together. Cao Hailiang said that even though the sales were not going so well in 2008, they were still hoping to continue their business by seeking other opportunities. Cao describes his own experience with changes in people’s attitudes: “Before, the people in my village thought that I was a burden, bringing bad luck to the family. But now, when they see me work in town on my own, they say that this boy is very capable.”

648 children, 648 stories. The polio project has built up a complete rehabilitation network, offering the beneficiaries holistic services including medication, education and social integration. Changing people’s attitudes, though, is a long-term effort. The working model of this project proves that combining community-based rehabilitation with institutional assistance – a people-oriented project – can be successful. The experience of being of help to “polio children” now enables the New Hope Center to reach out to children with cerebral palsy. As the name indicates, there is new hope for the disabled. Communities do not just cooperate in a project – through the work of the New Hope Center the whole of society is invited to completely accept disability. For now, the project is still only an experiment, but it was a successful one. It’s time for policy to change and time to apply this model on a bigger scale.