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The last few years in China have seen a drive to rehabilitate disabled children. The China Disabled People’s Federation has played a key role in this initiative. Non-governmental organisations also have an important role in being able to tap additional expertise, technology and funds both from within China and from abroad.
Since 1989 attention has been focused on the needs of preschool children with disabilities. Data from the National Sampling Survey of the Handicapped (1989, gave an estimate for the number of hearing impaired children in China aged 0-6 of 442,100, indicating the scale of the challenge. As far as deaf children are concerned, the rehabilitative approach has been on a number of fronts: prevention of deafness, early diagnosis, information for parents, focus on technical aids, edpecially hearing aids, preschool education emphasising speech training, and provision for training greater numbers of teachers in the specialised field of deaf education. These recent developments in provision aim to diminish the effect of deafness through technological aids, so that children can use their residual hearing to the maximum; train them to speak; and integrate them into ordinary schools.
In the autumn of 1994 I was able to make a two-month visit to China to find out more about preschool provisions for deaf children. I have lived and worked in China previously for a two-year period, so I had some knowledge of life in China. I spent a short time in the capital, Beijing, and a longer period of time in Nanjing, a municipality with a population of over 6 million people. My visit to Nanjing was supported by a non-governmental Chinese Christian organisation called the Amity Foundation, who introduced me to various institutions responsible for providing rehabilitation fo rpreschool deaf children in Nanjing. I was also able to visit projects for deaf people support by the Amity Foundation. An account of the institutions visited is given below.
Beijing: The Rehab. Research Centre for Deaf Children in Beijing.
Nanjing: The Amity Rehabilitation Centra for Deaf Children.
Nanjing Normal University, Dept. of Preschool Education.
Yanling Special Clinic: Chinese Traditional Medicine treatments for deafness
Nanjing Normal School for Special Education
Nanjing Deaf School
Provincial Rehabilitation Centre for Deaf Children in Nanjing
The Amity Rehabilitation Centre for Preschool Deaf Children in Yencheng
Audiology Dept. at No. 414 Naval Hospital in Nanjing
Amity Weaving workshop
Interviews with parents
Family
Grandparents
Diagnosis.
Rehabilitation
Parental attitudes to deafness and sign language
Summary
This brand-new research and teaching centre was built in 1991 in north Beijing under the auspices of the China Rehabilitation Fund for the Disabled, partly from funds donated by the British government. It is the model for rehabilitation centres for deaf children that are now being established in cities throughout China. There is a medical wing for diagnosis of deafness and fitting and maintenance of hearing aids, and a large central block incorporating the children’s classrooms. Classes include children with severe deafness as well as children who are only moderately deaf. The teaching staff set great importance on liaising with parents, as parents are considered to have a significant role to play in educating their children particularly in training them to speak. The Beijing Centre has published its own informational material for parents, as well as a set of illustrated textbooks for preschool-age deaf children. It also publishes a quarterly professional journal.
This was started in 1988 and now provides preschool education for 14 deaf children aged 3 to 7. it is situated in the grounds of the Nanjing Deaf School, of which it is administratively a part. The children are divided into three classes on the basis of age and degree of deafness. The children receive an interesting and demanding education and appear lively and happy. There seem to be two important features of the nursery which contribute to its educational success: one is the small size of the classes – between four to six children in each class – and the other is the quality of the teaching staff. At the time of my visit there were three young teachers who had specialised training at senior middle school level in teaching preschool age children. In addition, one teacher was attending a special course at Nanjing Normal University in preschool deaf education, and would subsequently return to teach at the nursery. As well as being well-qualified, it was evident that the teachers had a very positive and encouraging attitude towards the children.
The Amity Centre for Deaf Children was joined in 1991 by its present Principal, Mr. Zhou Hong, who had the experience of successfully teaching his severely deaf daughter to speak – she is now doing very well academicaly in a ‘key’ middle school in Nanjing. Mr. Zhou introduced several changes, and two in particular are worth mentioning. In contrast to the authoritarian, teacher-centred approach characteristic of Chinese schools, and probably necessitated by the large class sizes, the Amity Nursery promotes a ‘democratic’, international classroom style that encourages children to communicate. This is matched with a curriculum that is flexible and spontaneous, so that themes from daily life, stories and nature walks can be used to teach language in a relevant and natural way. This kind of approach is very innovative in China. The second point is that the Chinese written language – Chinese characters – is given special emphasis in the Amity Nursery. Again, this approach is unusual, as in other rehabilitation centres for preschool deaf children in China, the principle is to teach spoken language first, reinforced by its romanized form, ‘pinyin’. Yet there is a inherent logic in providing a written language for deaf children, especially profoundly deaf children, that is not tied to the sounds of words. Some of the children at the Amity Nursery can recognise up to a thousand Chinese characters, which will give them a great advantage when they go to primary school. Whether this ‘headstart’ is maintained throughout their time in school remains to be seen. At any rate, it is clear that children attending the Amity Nursery in Nanjing have access to high-quality preschool education that should give them an excellent start to their school education, whether this is in an ordinary school or in a deaf school.
A special course has just been established to train teachers to teach preschool deaf children. This is a two-year university-level course with theoretical and practical training, with 30 teachers taking the course. A special coursebook has been written by the Director of the Course, Assoc. Professor Zhou Jing, and two associates. The approach is ‘oral’: deaf children should be given access to spoken language through a structured program of games and exercises. It was interesting to note that all of the young teachers on the course were women – as in many other countries special education teaching seems to be mainly a female profession. These teachers came from every province in China, including Mongolia, and will return to their native provinces to help develop effective preschool deaf education there.
The first step of many parents when they find out their child is deaf is to seek a cure. In China there are treatments available in both Chinese and Western medicine. Acupuncture and gigong are both commonly used to treat childhood deafness. The Yanling Special Clinic treats deafness in children with electrical stimulation of the brain along with a special combination of Chinese herbs. They claim good results in children with even severe degrees of deafness, and can produce the evidence of the alteration in the hearing test results. mY own suggestion was that they were treating middle ear deafness (‘conductive’ deafness, rather than sensorineural deafness, but the doctors at the clinic insisted that the treatment caused regeneration of the auditory nerve. This would seem to be an impossibility, but until this and other treatments are investigated in detail it is dificult to be certain either way. Certainly many parents were prepared to spend a great deal of money to have a chance of improving their child’s hearing.
This is a teacher-training college on the outskirts of Nanjing that provides a four-year training course requires a minimum of junior middle school education. There are also programs for in-service training. At present the Nanjing Normal School for Special Education has places for nearly a thousand students, specialising in three areas – education of blind children, deaf education, and education of mentally handicapped children. Again, students come from all over China. The Normal School has in the past admitted at least one deaf person to the course in deaf education, a precedent which should hopefully be followed by other deaf teachers in the future.
Originally the Nanjing School for Deaf and Blind Children, the school divided in 1980, and the Deaf School was established at its present site. The grounds are attractive, with a large sportsground in front of a new-looking teaching block. The school has 330 pupils ranging in age from seven to twenty. Students are divided into twenty-six classes, the average class size being 12 students. The basic mode of communication is sign language, although there are also lessons in oral skills. Vocational training is given particular emphasis, especially at the upper end of the school. There is also a senior class of 20 specially selected students who follow academic or technical courses: these students come from all over China. Many deaf school graduates are placed in factories with which the school has links, including a machine tool factory and an electronics factory.
Sponsored by the China Disabled People's Federstion, this centre is the provincial branch of the model Centre in Beijing. At the time of my visit there were eight children at the nursery: in the time of my visit there were eight children at the nursery: in the next two years there will be a move to new premises and a considerable expansion to accommodate 36 children. According to the Principal of the Nursery, the new nursery will be on the seventh floor - which doesn't sound very convenient for small children or their parents! The provincial Rehabilitation Centre had an impressive array of equipment for testing hearing, and also had several young, well-qualified staff members. On this occasion there was no opportunity to see the children in their classrooms, so I was no opportunity to see the children in their classrooms, so I was unable to gain an impression of the teaching approach used.
Has several teachers who have attended preschool teacher training courses. The nursery itself is in a spacious new building. Some of the children were wearing rather worn and ragged clothes, but in the class I saw the children were sitting neatly in rows and paying attention to the teacher (she was teaching them to say their numbers clearly,. I was told that some deaf children in the countryside were so unruly and out of control that deaf schools in Yancheng refused to enroll them: so the social training the children receive in a nursery such as this one is important just as much as the more formal elements of their education. While there appeared to be an enormous gap between the situation of the children at the Amity Nursery in Yancheng compared with the Amity Centre in Nanjing, matching the great divide between the living conditions of urban and rural people in China, nevertheless a vital step forward in preschool provision for deaf children is taking place here in Yancheng and will form a strong foundation for development of future provision.
The Amity Foundation supports the work of the Audiology Dept. at the 414 Naval Hospital. Here parents who suspect their child may be deaf can get the latest and most exact hearing tests. If deafness is diagnosed, high quality hearing aids can be fitted. The hospital provides a full maintenance service. The Director of the Audiology Dept., Dr. Xu Tinggui, makes a twice-yearly visit to Yancheng to carry out hearing tests free of charge, and to check the hearing aids of children at the Amity Centre there. Children this age need new earmoulds at least every six months for their hearing aids to continue working properly, so this kind of backup service is vital. Amity have provided the vehicle for Dr. Xu and his colleagues to make their trips to Yancheng with all their equipment.
Amity set up a small weaving workshop with looms from American donors. Six deaf women are employed to weave scarves and other items for sale in China. The pure-wool scarves are attractive and can be sold at a competitive price. Two hearing supervisors organise work and pack the finished scarves. On visiting the workshop, noisy with the activity of the looms, one immediately notices the smart clothes of the weavers. Salaries depend on individuel productivity, and are basically generous, so the employees have extra money to spend on themselves and their families. Deaf people everywhere have difficulty obtaining jobs and tend to be given menial ill-paid jobs beneath their abilities: the importance of initiatives like this workshop is that deaf people are doing decent work for good wages in a good working environment. This must in the long run help to increase society's respect for deaf people and improve their status.
Visits to the places and institutions described above provided valuable background information concerning current provision for deaf people and deaf children in and around Nanjing. In addition I was able to carry out a very detailed study of the experiences and attitudes of parents of deaf children. Interviews were carries out with parents and grandparents of children at the Amity Rehabilitation Centre for Deaf Children in Nanjing; I was also able to interview parents from another five families in Nanjing, and seven families in the countryside. In total 29 families were involved. For most of the interviews I was able to talk to parents in their own homes and see how children behaved at home with their families. I asked parents a series of questions relating to many aspects of their life with their deaf child: the questions were based on topics that were relevant for Western parents with deaf children, but adapted to some extent to be appropriate for Chinese parents. I was particularly interested in finding out about modes of communication, whether children used speech at home, or gestures, or both. The main findings from these interviews are listed below.
The structure of the Chinese family is different from that of Western families, and this affects the situation of the deaf child.
Because of the current family planning policy in China, the one-child family is the norm in the cities, while two children per couple are permitted in the countryside. Even though urban couples are allowed to have a second child if the first is disabled - provided the disability is not hereditary - very few of the parents I spoke to have taken advantage of this. Reasons given for not having a second child are that the deaf child would not get enough attention, and also that parents could not afford the expense, time and trouble of a second child.
- usually the paternal grandparents, but sometimes the wife's parents - play an important role in family life and the upbringing of grandchildren. With both parents working, many families rely on grandparents for childcare. Many of the grandparents in the families I met were relatively uneducated, and if they had the responsibility of caring for their grandchildren, this could affect how they were able to support and reinforce some aspects of their deaf grandchild's education such as character learning. Nevertheless, this kind of formal education is only one aspect of the education process, and most grandparents, whatever their level of education, were looking after their deaf grandchildren with great care and devotion.
This appeared to be prompt in the cities, where there are good medical facilities. However in the countryside parents might not take their child to the local clinic or hospital until they were three or even fout years old, by which time it was obvious that they weren't able to talk.
The commonest cause of deafness in the children in my study was ototoxic drugs: streptomycin, gentamycin, kanamycin or neomycin given by injection to treat an illness in infancy. (Estimates from different surveys in the area of Nanjing give figures of between 50% and 70% for the proportion of cases of childhood deafness attributable to ototoxic drugs. This is basically a preventable cause of deafness, but the reasons why it remains a major cause of childhood deafness in China are complex. It seems that fevers and infections that in England or America would be treated by antifever medicines only, or possibly antibiotic syrups such as amoxycillin, are often treated in China by injections of the ototoxic drugs mentioned above. Doctors feel they have done the safest thing for their patient, parents expect injections if their child is feverish and ill. Streptomycin and related drugs are relatively cheap, and may be the only antibiotics available. Government guidelines on the use of this class of drugs in children has helped to increase awareness in the cities, so it is likely that the incidence of drug-induced deafness is falling in urban areas: however, in rural areas it remains a major cause.
All parents described feelings of shock and grief when told their child was deaf. Inability to accept the finality of the diagnosis may possibly explain their subsequent course of action.
Most parents take their child to a series of different hospitals and doctors in search of some 'cure' for their child's deafness. This often involves long journeys and great expense for the parents. Both Western and traditional Chinese medicine treatments may be tried. Parents may persist in looking for a medical 'cure' for several years after the diagnosis, spending vast sums of money on treatments that are usually ineffectual. At least at first, the search for a 'cure' tends to take priority over spending money on hearing aids and starting speech training.
In China, hearing aids are not provided by the government, as they are in Britain, but must be purchased by the parents. The cost of two hearing aids represents three to four months' wages for an urban resident; over a years' income for a peasant in the countryside. When parents manage to buy hearing aids, they are often disappointed that their child's hearing is not restored or significantly improved, especially if their child has a severe hearing loss. Some companies that sell hearing aids in China do not provide proper maintenance and information services, which are essential if hearing aids are to function properly. The result is that some children, especially in the countryside, are wearing malfunctioning aids, or else they give up wearing them.
Speech training methods are being developed and put into practice in a number of centres at provincial and country level. For deaf children who are only slightly or moderately deaf it is realistic to hope that with speech training and support from teachers they will be able to attend an ordinary school. However, for profoundly deaf children the likely destination is a deaf school were sign language is the main mode of communication. It seems that most children with hearing loss over 90db in both ears seem to have severe difficulties with speech and would have difficulty coping in a mainstram school even with plenty of support from parents and teachers. Having said that, there are children with more severe hearing losses who manage to acquire some speech and lipreading skills and are able to cope in an ordinary school. What is interesting is that most parents with preschool-age deaf children have a very good idea whether their child could be integrated, or needs to be in a deaf school for their education.
In some homes simple signs and gestures are used to make communication easier. The use of gestures seems to be more extensive where the child's deafness is more severe, and also where the parents seem to have decided that communication with their child is very important, even if that meant using signs rather than speech. Yet most parents still said that speech was the most important mode of communication for their child to learn. None of the parents would consider learning sign language at this preschool age to teach their child and communicate better with them: only one father said he thought he might learn sign language when his son started going to deaf school. Yet the critical years for childhood language acquistition would have passed by this time. It would be good if there could be some possibility for some severely and profoundly deaf children to have access to sign language at home from an early age, especially if it seems likely that they will be going to deaf school later.
In China, attitutes towards deafness appear to be rooted in cultural attitudes towards disability as well as a pragmatic awarness of the resulting economic and social handicap. Deafness is seen as a defect, and deaf people in China are invariably viewed as defective and disabled, not as a linguistic minority. Parents I interviewed clearly felt deafness carried a stigma: the most educated parents possible felt this more deeply. Many parents expressed worries about their child's future: in particular, whether they could get a good job. In a country without a social welfare system to support the unemployed this is clearly a major concern for parents with deaf children.
Both governmental and non-governmental agencies in China are working hard to develop services for preschool-age deaf children. In the city at least these services are beginning to deliver good quality equipment, advice and educational facilities. Expansion of provision is occurring year by year to meet the needs of more deaf children and their families. In order to maintain and improve providion, it is also very helpful to consult parents and gain useful information from their experiences: after all, they understand the everyday challenges of bringing up a deaf child.