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Post-Polio Health (ISSN 1066-5331)

Vol. 11, No. 2, Spring 1995

Disability, Polio, and the Late Effects in China

Haiou Yang, PhD, born and raised in China, and Joanne Y. Yamada, MEd, a third generation Japanese-American who was disabled at birth with cerebral palsy, went to China for a 21-day study-visit. The purpose was twofold: to collect information on persons with polio with emphasis on the concept of aging with a physical disability and to study cultural attitudes about disability and rehabilitation in China. Their trip was funded by the International Exchange of Experts and Information in Rehabilitation (IEEIR) which, unfortunately, lost its funding before their report could be published. Polio Network News is pleased to publish its condensed summary. For a full report, contact Joanne Y. Yamada, 1409 Kinau St., No. 3, Honolulu, HI 96814 (808-537-6333).
-Joan L. Headley, Editor

"As a person with a disability my standard for marriage cannot be too high. My wife is also a person with polio. Our marriage is probably happier than a normal person's."

"After I reached my teens, my parents often taught me to be independent in doing everything. They tried to nurture my ability to live independently. At the same time, they taught me to have self-confidence, to study hard, and to cultivate myself. Polio has had no impact on my relationships with my friends and my neighbors."

"From the day I went to pre-school, to high school, and when taking the university entrance examination, to finding a job, I got unequal treatment and was discriminated against because I was a person with polio." (Before 1990, persons with disabilities were not allowed to attend a university.)

"The inaccessibility and inconvenience of public facilities have caused difficulty that persons with disabilities cannot overcome themselves. I hope that the society can improve accessibility in public facilities and implement a construction law with emphasis on accessibility."

Changing Awareness and Attitudes

Prior to 1980, persons with disabilities in China were almost invisible and devalued as indicated by the use of the Chinese character "canfei" meaning crippled and useless when describing individuals with disabilities. Deng Xiaoping's son, Deng Pufang, after receiving medical treatment for spinal cord injury in Canada, returned and influenced disability awareness. He coined a new term "canji" for describing persons with disabilities. "Canji" is translated to mean "disability associated with illness."

He established organizations for persons with disabilities and, ultimately The Disabled People's Federation became an administration at the Ministry level and an entity for consumer advocacy. For example, in one county, the Federation assisted its 10,800 citizens with disabilities by providing employment similar to sheltered workshops found in the US, and acting as a matchmaker for arranged marriages.

By 1990, the government had passed the Law of the People's Republic of China on the Protection of Peoples with Disabilities which was implemented by a National Five Year Plan for People with Disabilities.

China conducted a national survey on persons with disabilities in 1987. The survev results suggest that there are 1.83 million people with polio. The number of persons with disabilities in China could be 51,640,000, or approximately five percent of the total population. UNICEF considers these numbers to be low compared to other nations. The low number may be due to incomplete statistics and/or a definition of disability that focuses only on the most observable sensory, physical and mental disabilities.

Based on the 1987 survey, The Disabled People's Federation proposed and implemented Three Campaigns of Rehabilitation:  (1) Cataract surgery for persons with visual impairments, (2) Training for children with hearing and/or speech impairment and, (3) Orthopedic surgery for persons with polio.

"I stayed in the hospital for a period of time, but I don't remember how long. Later on, I tried herb medicine, massage, and acupuncture. When I was nine years old I even tried the pressure-point-deep-stimulation method. However, none of those treatments helped."

"My parents did not care how much money they had to spend on treating my illness as long as it could be cured. Because of this I stayed in the hospital for years, since I was one year old. From 1954 to 1958 my hospital fee was as high as 20,000 yuan." (The average annual salary per capita is 500 yuan.)

"None of the treatments helped. My parents tried to improve accessibility at home themselves. For example, they changed the door handle, and made a toilet seat, and built a ramp. With a thread of hope for the possibility that I would be cured, my parents have tried their best to help me even in my adulthood. They have always been ridden with guilt."

Surgery - Treatment of Choice

The target number of orthopedic surgeries on persons with polio during the Three Campaigns was 300,000. The actual number of .surgeries completed was over 400,000.

Surgery is the popular remedy chosen by parents for children who had contracted polio and is recommended by medical and rehabilitation professionals. Children who had polio are considered a "huge burden" on families. Family members are the primary caregivers so it is necessary to make children as independent as possible. The negative stigma of using assistive aids is also a factor for choosing surgery.

The cost and demand of surgery has inspired new procedures. One noted orthopedic surgeon can complete a tendon-lengthening operation in one minute, and a pelvis lengthening procedure in 15 minutes, allowing him to perform eight to ten surgical procedures a day.

Post-surgery care is not available and rehabilitation programs after surgeries are minimal. Many patients who live in the countryside receive no therapy. The only comprehensive rehabilitation center in the country, the China Rehabilitation Research and Training Center, is located in Beijing and was established in 1988. It combines Western practices with traditional Chinese medicine.

There have been only limited studies on the short-term side effects of the orthopedic surgery, and the long-term effects have not been explored.

"For 10 years in Pudong I had to take a ferry from Shanghai City to my factory every Monday. I fell all of the time because of the shaking, upward bridge to the ferry, and the long distance, and the muddy, unpaved road. Later I was transferred to work as an accountant in Shanghai so that I did not need to take the ferry. But, my health just got worse."

Late Effects of Polio

Questions about the concept of the late effects of polio elicited a variety of responses from health professionals. Some had never heard of it. Some explained it as being the equivalent to residuals of polio which can be rehabilitated through orthopedic surgery. Surgeons aware of the concept of post-polio, however, expressed that they were primarily concerned with the younger generation.

A French UNICEF project officer queried, "Is late effects of polio culturally specific to the United States?" Researchers within the Chinese Research Institute for Sequelae of Poliomyelitis were familiar with the concept of the late effects of polio, being introduced to it during a 1988 conference with physicians noting clinical observations of the late effects of polio. Older people with polio who express some of the late effect symptoms are told it is all part of the growing old process.

Acute polio is still a significant public health issue. During the cultural revolution (1960s-1970s) a record 50,000-60,000 cases were recorded. Expanded efforts by China's Ministry of Public Health to immunize the nation's children has proved beneficial. In 1990, VVHO reported 5,095 new cases of polio, however, by 1993 the new cases were at an all-time low - 653. Treating older people with polio with new disability is not a priority. Professional attitudes may change, however, as China's goal of eradicating poliomyelitis by the year 2000 is accomplished.