A SURVEY OF THE NEEDS OF AND SERVICES FOR PERSONS WITH PHYSICAL DISABILITY IN CHINA

Jinming Zhang^*

ABSTRACT

This study surveyed the needs of people with disabilities and the services available for them, in order to identify factors that influence the realisation and fulfillment of their needs; and to make suggestions to relevant departments of government for improvement of the situation of people with disabilities.

Both qualitative and quantitative methods were used in this study. 109 persons with physical disability were involved, 50 from a rural area, 59 from an urban area. Data were collected through a questionnaire. 10 persons with disabilities were involved in a semi-structured interview. Two focus group discussions were conducted with 12 people with disabilities.

It was found that there was a big difference in the needs of and the services for male and female persons with disabilities between rural and urban areas on various aspects, such as medical rehabilitation (including western medicine and Traditional Chinese Medicine), education, rehabilitation knowledge, employment, free-barrier environment reconstruction and other variables. The study recomends that community-based rehabilitation (CBR) programmes should be facilitated further in order to promote more participation of people with disabilities in social activities.

INTRODUCTION

China is a developing country and by size almost one-fifteenth of the world's landmass. It has the largest population (1.26 billion) and the largest number of people with disabilities in the world. Owing to historical reasons and various other constraints the work for people with disabilities in China, has lagged behind overall social and economic development (1). People with disabilities have received inadequate education. Many of them are yet to receive the necessary treatment for rehabilitation (1). A considerable number of people with disabilities though capable of work are still unemployed and those employed have not been guaranteed stable and appropriate jobs (1). Discrimination of and prejudice against people with disabilities still exist in society to various extents. There is also environmental hindrance to their participation in public life. The quality of their living conditions is below the social average. In short, there are a host of problems for people with disabilities that call for urgent solutions in present-day China (1).

OBJECTIVES OF THE STUDY

This survey was conducted to identify the needs of and services for people with disabilities to define the magnitude of the problems and to promote discussions with local communities about priority activities.

The study objectives were:

• To survey the needs of adult persons with physical disabilities.
• To survey the services for adult persons with physical disabilities.
• To identify the factors that influence the fullfilment of their needs.

METHODOLOGY

The objectives of this study necessitated the use of a multi-methodological study with both qualitative and quantitative methods. Ethical issues were considered in this study. People with disabilities were asked about their willingness to be interviewed. All of them had agreed to being involved in this study. Interviewees were not asked their names, addresses or other matters that were not relevant to this study, except what they expressed willingly. The conversation of some respondents were recorded with their permission.

The network system of the organisations for people with disabilities was used for conducting this research. China Disabled Persons Federation (CDPF) is the headquarters of the organisations for people with disabilities in China. Hence, China Rehabilitation Research Centre (CRRC), being one of the institutes with which CDPF is affiliated, contacted the local organisations, who in turn contacted and arranged to meet people with disabilities and their family members.

The assistants of local organisations for people with disabilities in the target areas explained the survey to the people with disabilities and their family members, beforehand. People with disabilities were informed and meetings arranged at their homes or an appointed place in their communities, in advance. Research assistants accompanied the author to interview them. In the rural area, the assistants often acted as "interpreters", since some of local residents used a different dialect.

Study Areas

Dingxi County is one of the counties of Gansu province. It has the general characteristics of the western rural areas in China. For example, it has a considerable number of peasants and people with disabilities, relatively poor economic conditions and disorganised and inconvenient traffic. This county has been defined as one of the poorest areas by the State based on the fact that the average peasants' income is five times less than the national figure (for instance, the net annual income was 55 US$ per peasant in 1996 when the national figure was 240 US$ per peasant (1 US$=8.3 RMB) (2). Dingxi County was selected for the field work in a rural area. Because China is such a large country, different regions have different conditions, such as population, economy, education, and so on. The sample of people with disabilities in Dingxi County are only representative of Gansu province and neighbouring provinces, but not of people with disabilities in other rural areas of China.

Fengtai district is not the richest urban area in the capital city. Here the economic situation, living conditions, educational resources, employment possibilities, etc. are at average level. Therefore, Fengtai district was selected for fieldwork in the urban area. Fengtai district is representative of the urban districts of Bejing, and probably also of other urban districts in the capital cities of other Chinese provinces, but not of those in mid-sized and small cities. Therefore, people with disabilities in Fengtai district can be seen as representative of urban districts of Beijing and in other capital cities of Chinese provinces.

Population and Sample

In this research, the criteria for physical disability are based on the National Practical Criteria of Disability, which was promulgated and implemented by the State Council in 1986 (3).

The study population comprises persons with physical disabilities. In order to learn the status of the needs of and services for people with disabilities, male and female, young (above the age of 16) and old, both rural and urban. 109 persons with physical disabilities were purposively selected for the study, 50 were from the rural area of Dingxi County; and 59 from the urban area of Fengtai district.

Data collection

Date were collected using a questionnare (structured interview), semi-structured interviews and focus group discussion. The questionnaire for this survey was translated into Chinese from English. Before conducting this research, the pre-testing of the questionnaire was carried out with 10 disabled persons with physical disabilities along with their caregivers who were from a rural and an urban area. The questionnaire consists of close-ended questions with single-choice answers.

The variables in the questionnaire include:

• The demographic information such as gender, age, occupation, education, marital status, income, etc.
• Information on disability: type of physical disability, the period of the disability, cause of disability, etc.
• Needs of the persons with physical disabilities: medical rehabilitation, functional exercise, activities of daily living (ADL), integrating into society, rehabilitation knowledge, education, employment, barrier-free environment reconstruction, etc.
• Caregivers' data: who the main caregivers are, whether they have knowledge, the ways of obtaining the knowledge, etc.
• Other data: the purpose of employment, the main avenue to obtain information, the regular place for getting help, whether free help is available to them, etc.

Semi-structured interviews had some open-ended questions based on the issues of their needs and services. Through this interview, people with disabilities were given more opportunities to express their thoughts and to elaborate on the original response and their experiences. Ten persons (5 from the rural area, 5 from the urban area) were involved in semi-structured interviews after questionnaire interviews.

Two focus groups were identified and discussions were conducted in the rural area and the urban area respectively, in their communities. Family members of people with disabilities as participants shared their experiences in the focus groups. The group meeting was conducted with 5 participants in Dingxi County, and with 7 participants in Fengtai district.

The variables in the questionnaire were coded and analysed using software SPSS 10.0 after checking for errors.

RESULTS

Sample Distribution

There was a total of 109 participants in this research. Among them, 88 were male, 21 were female. The age range was between 16 and 71.

There are more male respondents than females. This may be because more males with disabilities have identity cards for disability than females. In the rural areas of China, the idea that "men's social position is higher than women's" is still common. So males with disabilities may be more likely to register and get the identity cards for disability. Men also participate in "social activities" more actively than women. So males with disabilities are more likely to be involved in a study like this.

24.0% of people with disabilities in the rural area have no job. 66.0% of the respondents are peasants, which means they have no regular job or income. However, in the urban area, 45.8% of people with disabilities are cadres, which means they have permanent jobs, and regular incomes every month.

Table 4 shows that the income of urban people with disabilities is higher than rural people with disabilities. In rural areas, the proportion of people with disabilities with income at the "501-1000" and "over 1000" are respectively 6.0% and 2.0%, and near half (46.0%) of them have income less than 200RMB per month. However 49.2% urban persons' income is over 1000RMB per month.

Table 5 shows that the income of females with disabilities is a little less than males with disabilities, but not very significantly. In China, especially in rural areas, men usually work outside to support the home while women stay at home. So it is not unusual that females with disabilities do not work and stay at home.

A demobilised soldier said, "I have no work to do. I have stayed at home many years. I cannot do anything and am cared for by my wife. She has bad eyesight because she is old. She has no work either. In our area, we are peasants; our only job is to plant crops. We have no formal work."

Another rural person with disability said, "We are peasants without any regular way to get money. All year round we grow potatoes to sell for money. That is too little! We have to carry potatoes to town ourselves to save the transportation fee if we had hired a tractor."

In China, peasants are a group of poor people with a low social position. A rural area implies poverty; a peasant who lives in a rural area implies being uneducated. An urban area implies wealth; an urban person implies influence, good employment and civilisation. Therefore, a native peasant in China longs for a creditable job; he hopes a good job will bring him a good income. However, the citizenship status of peasants is very strict, they generally cannot leave the fields and a peasant will have a hard life, unless he gets work after studying in a university. A peasant will experience more difficulties if she/he becomes disabled.

Generally, there is a big income gap between people in a rural area and an urban area in China, with the gap among people with disabilities being bigger. In recent years, the situation of unemployment has become more serious. Non-disabled workers are employed in the reformed enterprises first; workers with disabilities come second. Although the income of urban people with disabilities looks better than rural people with disabilities', their lives are difficult too.

An urban person said, "I will not try to find a new job although I can do something, my unit pays me every month after I became disabled."

Another urban person with disability said, "The prices often increase, we have to consider how to spend our wage on what family needs most. We try not to spend any money on things that are not necessary."

The rural people with disabilities have difficulties in looking for some work in the city because most of them are not well educated or lack any technical skills. The jobs that they take are usually simple physical work which does not pay well.

Whether male or female, the number of unemployed is higher than employed, and the 9 females with disabilities with regular jobs are all from the urban area. These results show that disability causes a person to lose his/her job, or makes it difficult to get a job. It also shows that female with disabilities in urban areas have more possibilities of getting a regular job. However, in a rural area, most of the people with disabilities originally do not have regular jobs, so they would have more difficulty in getting one.

The tables show that the educational levels of rural peoples with disabilities are generally lower than those in urban areas. Females with disabilities generally receive less education than males with disabilities.

Educational opportunities in rural areas in China are not much. People with disabilities have fewer chances of getting an education than non-disabled persons. Firstly, many rural people think education is not useful for people with disabilities; it is to "hold a candle to the sun" as the Chinese saying goes. In interviews and group discussion, some respondents disclosed that they held this idea too.

A rural woman said, "Persons with physical disability need others to help them to go somewhere. They have difficulty in moving even to go shopping nearby."

Another one added, "Yes, in our place, it seems to make no differences whether a person has been to school or not. Everyone does the farm work all year round, so the knowledge that they learned is not useful."

Secondly, the stigma of disability faced by people with disabilities themselves and their family members prevent people with disabilities from participating in community activities or even receiving education. That people with disabilities stay at home and do nothing is very common.

However, the stigma faced by an urban family seems less than of those in a rural area. Some urban people with disabilities actively learn something to become independent.

An urban mother said, "I am trying to send my son to school. He is now 16 old. I taught him at home these years. Many schools would not like to admit him. But we would pay more. I do not understand why!" The son is a young boy in a wheelchair.

Thirdly, the educational resources in rural areas are less than those in urban areas. Usually, in a rural area, a school covers many villages and lacks teachers. Teachers do not like to work in a rural area because they cannot advance, and they receive poor wages. Therefore, the rural area teachers, especially young ones, try to find a new position in an urban school.

Fourthly, they need to pay for education, which is an important factor. Education in China is not free. It is very expensive for a poor rural area. According to article 2 of the Regulations on the Education of Persons with Disabilities (1997), "The education of persons with disabilities shall be carried out in compliance with the state's educational policies to raise in an all-round way, the quality of persons with disabilities according to their physical and mental needs, and to create conditions for their participation in social life." However, since there are such a large number of people with disabilities in China, it is very difficult to reach all regions, especially remote rural areas.

The study also showed that females with disabilities received less education generally, than males with disabilities. In addition, it is found that among the 21 female respondents, four respondents who are illiterate are all from the rural area, while five with university education are all from the urban area.

A person with polio said, "I had difficulties in going to school when I was young, because I could not walk without a walking stick and was a big burden because of the school fee in my family, so I gave up finally."

Another said, "When I was child, there was no school in my village, my home is too far from the neighbourhood school."

A female with disability said, "I like going to school, but my home was poor. And my father told me it is not useful to go to school for a girl. I stopped school after I finished grade two."

Economic problems are probably the main reasons for persons with disabilities receiving no education and poverty also leads to dropping out of school. Usually a poor area is branded as having a "poor" education.

Needs for Medical Rehabilitation

From this study, the choice of "no needs" on medical rehabilitation in the rural area is 40.0%; in the urban area is 13.6%. It shows that the people with disabilities in the rural area do not need more medical rehabilitation than people with disabilities in the urban area.

Both in the rural area and the urban area, a considerably high rate of respondents have a need to take medicine or herbs, which implies that herbs are popular among people with disabilities.

However, when interviewing it was found that many people with disabilities in the rural area ignore medical rehabilitation. In the rural area, many people with disabilities think that medical rehabilitation is a "time-consuming" and "money-wasting" behaviour. They also think that medical rehabilitation cannot "cure" them. Maybe due to the wider dissemination of information on rehabilitation in the urban area than in the rural area, the urban people with disabilities are able to pay more attention to medical rehabilitation.

A middle-aged woman said, "I have been disabled so many years. Amputation, I lost a leg, nobody can give me a new one. This is it. I have not and will not see a doctor. I do not think they can help me "The artificial leg is impossible for me, and it is too expensive. I have used the walking stick everyday. I also think I am bad looking..."

Some of the experiences they have encountered have led them to give up seeking medical rehabilitation. One person with cerebral palsy, a man aged 21, told his story:

"I know about my disability that is motion difficulties. My mentality is normal. I know that I need functional exercise life-long. I have tried to find some way to cure myself although I know it is impossible for CP, but now I have given up. I know a great deal about CP."

"Three years ago, there was an old man who titled himself a doctor and said he was good at healing CP. My parents believed him and pre-paid him a lot of money, however, he only gave me some herbs that did not work at all. He stayed in my village some days then suddenly disappeared. We realized that he was a swindler... since then, I decided not to look for any treatments any more".

From the group discussions, it came out that the family members of people with disabilities in the rural area are interested in cure; however, in the urban area the interest is in how to rehabilitate. Some persons have tried to find some remedies in books. Maybe urban people have better education than rural people, and hence have more chances to get books to read on these subjects. So rehabilitation is understood differently by rural people and urban people.

A rural family member said, "We went to the city to see doctors many times, doctors asked us go home to exercise ourselves. But we do not know how to exercise at all. I have also tried to find some medicine for stroke, but in fact, there seems no way to make a recovery."

An urban wife said, "Rehabilitation takes too long and a lot of money, I retired early to look after my husband. At the beginning of his illness (hemeplegia), we sometimes invited a therapist to come to help him exercise at home, but later, we had to stop because of lack of money. Now he is stable. I exercise him sometimes. I have known that he cannot be cured; he has been trying to improve his body functions."

Traditional Chinese Medicine (TCM)

Various types of TCM, including herbs, traditional massage and acupuncture, etc. are favored by most people with disabilities in China. At the group discussions, the family members of people with disabilities also have a preference for TCM over western medicine.

A family member said, "After the emergency stage of the stroke, we liked to use TCM to improve his physical functions. Practice proves it works. We mainly use massage and acupuncture. I do not know medicine, but I believe in that."

An urban person said, "TCM is very mysterious, the points and meridians are invisible, they are in our body indeed, but we can not see them. My friends recommended us to see a TCM doctor."

A rural family member said, "In our rural area, we have often seen a TCM doctor, because it is cheap."

An urban PWD said, "I took both western medicine and Chinese medicine, I think that is the best way. TCM has no side effects, so a western doctor recommended me to take TCM too."

Many remedies of TCM are at the beginning of scientific research, which means there is a need to collect clinical experiences and do research in depth. Massage and acupuncture are generally used to release muscle spasms.

A TCM department is a necessary section in different hospitals in China. In CRRC, the professional rehabilitation institute, TCM plays a very important role for PWDs.

Needs of Integrating into Society

42.0% of the rural respondents expressed that had no need to improve their ability to integrate into social life, while15.3% urban respondents did not have this need. Urban people with disabilities get more attention than rural people with disabilities in China, which probably is the reason for this result. CBR programmes have developed pilot facilities in urban areas. Therefore, urban people with disabilities can obtain the benefits from CBR programmes earlier than rural people with disabilities.

28.6% of the females with disabilities expressed their need for working outside the home, which implies that the ideas of the women are changing. On the contrary, only 18.2% of the males with disabilities have this need. This is might be because the man's family position is higher than a woman's in the Chinese tradition. Men prefer staying at home when they become disabled.

Lower needs on "marriage/ stable family" are found in both males and females in the structured interview. However, these needs were expressed in the semi-structured interview and focus group discussion.

One rural person with disability said, "I think I have acclimatised to the social environment. I long for more persons to communicate with. However few people care about me. I often feel that I have been ignored."

A man with polio said, "I do not like to communicate with my neighbours, because I do not think they like to chat with me for I am disabled, nor do I like to do something in public, only to stay at home."

To marry and maintain a stable family are serious problems for people with disabilities.

"Most people with disabilities marry other people with disabilities. It is nearly impossible for a disabled person to marry a non-disabled person; however, once a person with disability has married a non-disabled person, they generally do not divorce." The group members reached this conclusion when discussing this matter.

"It is so lucky for a person with disability to marry or to be married, but many of them cannot marry so will be single all life-long because of their disabilities"

A young man with cerebral palsy said, "Marriage is an extravagant hope for me."

Prejudice against disability generally still exists in the countryside. In the Chinese tradition, divorce is a humiliation and strongly opposed by people in a rural area, which is why people rarely divorce.

It is almost impossible that a non-disabled person would marry a disabled person in China, especially in a rural area. The family will strongly oppose it if a family member wants to marry a disabled person. One is stigmatised if one marries a person with disability. Reversely, if a person with disability marries a non-disabled person, the person with disability is not stigmatised, although this almost never happens.

Information through interviews showed that most of the disabled couples (husband or wife with disability) have experienced a marriage crisis. "I am sure 90% of disabled couples has marriage problem!", was a statement made by an urban person with an amputation who continued, "Especially among young disabled couples, they will divorce sooner or later." Further, "I am 50 years old, 14 years have passed since my amputation. I did not divorce, but I tasted the bitter life of a disabled couple, I have some friends with disabilities, we sometimes talk about our private lives."

In urban areas, some people with disabilites are able to participate actively social life and are able to be independent.

An urban person with a mild motor disability said, "I stopped working after I got injured. I am now working at a factory near my home. My duty is to deliver letters and newspapers from yard gate to offices, it is not difficult for me." Another said. "I do not expect to make much money, but this job gives me chance to do something for others. I do not like to stay at home. I would be very bored if I had nothing to do."

The ultimate goal of rehabilitation is integrating back into society and participating in social life. This study shows that the situation of the urban people with disabilities integrating into society is better than that of the rural people with disabilities. This is mainly because the urban area has a better cultural and disabled friendly environment policy for people with disabilities. Many new policies and laws for people with disabilities are first implemented in the urban areas in China, for example, the rules on barrier-free construction. Therefore, urban people with disabilities benefit more from the new rules. In addition, changes happen faster in urban areas. Urban people with disabilities are not limited by unfavourable traditions. They prefer to go outside the home to participate in social activities relatively more than their rural counterparts.

Stigma against people with disabilities

Stigma against people with disabilities is still common in present day society, although people with disabilities are now being paid more attention by the government. Stigma agaist urban people with disabilities seems to be less compared to rural people with disabilities.

Prior to 1980, persons with disabilities in China were almost invisible and referred to as "canfei" (Chinese character) meaning crippled and useless or worthless. Nowadays a new term "canji" is gradually being used more. "Canji" could be translated as "disability associated with illness." In recent years, the term "gong neng zhang ai zhe", meaning "individuals with disabilities", which is not derogatory is being used by more and more professionals, but its usage is not so common.

Chinese people with disabilities feel ashamed when they are outdoors and they worry about others staring at and talking about them. Stigma from disability is a heavy burden on people with disabilties and their family, and also affects various aspects of their lives, including education and employment.

Stigma also begins from some of the family members of people with disabilities, when they do not encourage them to communicate with others. They prefer to leave them at home although their community encourages people with disabilities to participate in the social activities. This mainly happens in rural areas.

A rural person with disabilities described his experience. "Once an opera came to our village to play, I accompanied my disabled wife to see it. We came back home before that play ended, because some children teased us although their parents stopped them right away. From then on I have not gone to any place where there are many people."

In China, the family unit is regarded as most important so traditionally people with disabilities are seldom sent to community homes or other places to be cared for. It may also become expensive if they are sent to institutes.

Need for Rehabilitation Knowledge

Although many people with disabilities are not interested in learning something about their disabilities, they have a strong desire to obtain simple and practical information on rehabilitation, through books, booklets, newsletters, or other literature.

Statistically, more urban people with disabilities have the need for their family members to be trained than those in the rural areas. This indicates that urban people with disabilities have realised the importance of having family members with rehabilitation knowledge. In the rural areas, only 8.0% of people with disabilities have family members who are informed. Poverty and minimal education are probably the reasons.

The table shows that there is a similarity in the needs for rehabilitation knowledge between males and females with disabilities. Both males and females prefer to read simple materials on rehabilitation.

Through interviews, it was also found that some people with disabilities feel rehabilitation technologies are too professional for them; only a person with professional training could handle it. So they never tried to learn a few skills by themselves, although some skills are simple, practical and good for their physical functions.

A rural person with disability said, "I have always thought that rehabilitation therapies belong to professionals. I can not make use of them, so I never tried to learn."

"I only graduated from middle school, so I think I don't have the capacity to master rehabilitation skills."

"I can treat myself? I doubt it. It is difficult to find some guidebooks for us."

"I don't think the community doctor can help me, those doctors from a big hospital may be better. Regarding rehabilitation knowledge, I learned something from books that I bought, but nobody is able to teach me and my family the so-called practical exercise technologies "

At group discussions, the family members talked about their needs for rehabilitation knowledge and their hopes that some training course would be managed for them.

A family member said, "We need to have some skills to treat my wife, I don't think it is very difficult. We must pay a lot of money to exercise in the rehabilitation department of a big hospital. If you can organise some training here, I will be the first to register."

Obviously, some of the respondents thought that the rehabilitation was mysterious, and some of them had the desire to learn, but the training was not available. This has implications for planning for expansion of CBR training.

Need for Employment

Although government rules provide a quota of employment for people with disabilities, the poor status of employment in present-day China cannot supply more job opportunities for them. The findings in this research show 40.4% of people with disabilities chose "no need for employment". However, many people with disabilities still have great difficulty regarding employment.

Over one third (38.0%) of rural people with disabilities have the need to raise livestock, which is because of their limited environment. Most rural people with disabilities have minimal education and not much knowledge is needed to raise livestock, so this is probably seen as the best choice of rural people with disabilities.

The results show that over half (59.6%) of people with disabilities have the need for employment, with more males reporting the need. Most of the people with disabilities also expressed their need for employment in interviews.

Some respondents claimed that the prejudice from society also makes it difficult to find employment. An urban person with disability said, "Now-a-day, the situation of people with disabilities is better than some years before, but people still look down on disabled persons. They think we are disabled and cannot work. So they do not provide job opportunities for us."

Another young urban person with disability said, "I want to obtain some vocational training, such as home appliances repairing. Then I can operate a private repairing shop," "Now many workers are laid off by their units. People with disabilities cannot find a job, it is impossible."

The wife of a person with disability said, "I tried to discuss with the unit of my husband after he became disabled, I hoped they could arrange a simple job for him, but the directors of his unit refused my request and just made excuse."

"I do not want to find a job in society, because they will laugh at me. I cannot bear their staring at me."

It seems that there are more choices for self-support in an urban area than a rural area.

A person with disability said of his hope of employment, "I could carry passengers downtown if had a motor tricycle. I also want to pick up some knowledge on computers and I could type something at home. I saw this type of shop managed in the street."

Purpose of Employment

Over one third of the people with disabilities in this study whether in the rural area or the urban area, whether male or female, said that the main purpose of employment is to make money to receive further rehabilitation treatment. More urban people with disabilites, and more males mentioned "showing self-worth" as their main purpose.

Generally, people with disabilities are in a lower social strata, and are limited by their disabilities to participate completely in social life. In this study, 16.5% claimed that their main purpose for wanting employment is to show their self-worth. However, 18.2% of males felt this while only 9.5% of females felt so. This result implies that more males with disabilities prefer showing their self-worth than females. The reasons perhaps are due to the Chinese tradition where men are the core persons in a family all the time. So the core position would be changed when a man becomes disabled. However, being a man, he does not wish to accept the truth, therefore, he tries to do something to show his capabilities.

A rural person with disability said, "The purpose of employment, just to make money. Regarding the purpose of making money, it is of course for seeing a doctor to get rehabilitation treatment."

An urban person with disability said, "I think if have a job to do, I could reduce the burden on my family, but it is difficult for us to find a job."

An urban female with disability said, "I am independent. I am doing a job, which shows that I am useful. The purpose is just to be independent."

Reasons for Difficulty in getting Employment

"No skills" and being at a "disadvantage in competition " were deemed as the main reasons by rural and urban people with disabilities respectively. Moreover, 30.5% of urban people with disabilities think "social prejudice" is the main cause of difficulty in employment.

The main reason of difficulty in employment for people with disabilities is that they have no technical skills in the employment market. The second reason is due to the social situation of employment today where competition is high.

An urban person with disability said, "These years, even university students have difficulty in finding a job, let alone us disabled, a man without a special skills has difficultly in getting a job."

Another urban person with disability said, "I think the main reason is the social prejudice: the employer looks down on people with disabilities, yes, there are many people who discriminate against PWDs even in an urban area."

Needs of Barrier-free Environment Reconstruction

Many respondents do not think that environment reconstruction is necessary. People with disabilities and their families pay more attention to the people with disabilities themselves. In other words, people with disabilities tried to improve their physical functions, but not to make the living conditions for their daily life more convenient. It was seen that 56.0% rural respondents have "no needs" for barrier-free environment reconstruction, while 37.3% of urban respondents have this same response. The results also show that only near one tenth of people with disabilities whether in rural or and urban areas, have already reconstructed the free barrier environment.

The statistics show more males with disablities have "no needs" for barrier-free reconstruction than females. This may be because more males with disabilties ignored the importance of barrier-free reconstruction. The statistics also show 22.7% of the males with disabilities thought barrier-free reconstruction was "unnecessary", while only 4.8% of the females thought so.

Some people with disabilties do not care about their environment reconstruction:

A young person with disability said, "It is not important, I can overcome this small difficulty. It just means I have a chance to exercise when I go up and downstairs."

"I never thought about that, but it is a big engineering job to change the house, and I would still have difficulty. If only my home would be changed, but the street and other public places wouldn't be changed,"

If the reconstruction is free and somebody can help them, and the price is low enough, then they will reconstruct, otherwise they would rather keep up the status quo.

A rural person with disability said, "I prefer to spend money on rehab treatments than on changing my house."

Another rural person with disability said with bitterness, "Nobody can help to change the steps. And I can not pay for that."

At the group discussion, one participant said, "I have never thought to change the steps in my home, but it is only five steps, so we did not do anything."

"He stays in room all day round, so we did not change anything for him, if he wants to go outside, we will help him"

An urban family member of a person with disability said, "We live crowded together with neighbors. It will be a big engineering job if we reconstruct." "Yes, it is very troublesome for us to change", another urban person added at a group discussion.

The main source of obtaining information for rural people with disabilites is through TV and radio, which is 62.0% of the sample; the second source is through family members, relatives or friends, which is 24.0%; the internet is used by only 2.0%.

In the urban area, the main source of obtaining information for people with disabilities is also through TV and radio, which is 45.8% of the sample; the second source is through newspapers, journals or magazines, which is 23.7%. 15.3% of respondents use the Internet.

11.4% of the males with disabilities obtain information through the Internet. No females with disabilities use the Internet. The main source of obtaining information for females with disabilities is watching TV and listening to the radio. Communication with family members, relatives and friends is another main way of obtaining information for females. The Internet is a modern media tool, which is not common in China, therefore, print and visual media are still used widely.

When some rural people with disabilities were asked how they obtained information on rehabilitation, current social news on disability, etc. they answered as follows:

"I listen to radio everyday. There are some programmes about disability, but very few."

"I can only write my name, I can not read books or news papers. My children will tell me about rehabilitation knowledge when they get it."

"I know what a computer is. But I cannot operate it. Internet? Oh, I do not know about that, I have never heard of it."

A young urban person with disability said, "My parents bought a laptop for me after I was injured, because I have nothing to do all day long. I go on Internet everyday."

A middle aged urban male person with disability said, "I prefer to read books at home, my children bought some professional journals and books from bookstore for me."

Caregivers

Whether in the rural or the urban areas, spouses, parents or children are the caregivers of people with disabilities. This rate is 76.0% in the rural area and 66.1% in the urban area.

For both males and females with disabilities, most of their caregivers are their family members. 20.5% of males with disabilities are being cared for by their relatives/friends/ neighbours. More females with disabilities have no caregivers. Some people with disabilities are independent and do not need caregivers at all.

The family traditionally has been the most fundamental and important unit of society among the Chinese and this holds good even today. The family is also an important economic unit. The roles of the members of a Chinese family are highly interdependent. In China today, it is still very common for three generations to live under one roof, especially in rural areas. Family members usually give people with disabilities great support psychologically in daily life. At the same time, the family has to bear the economic burden for rehabilitation.

However, a new problem has emerged because people with disabilities are cared for by their family members. The study shows that many people with disabilities do not want to be independent and feel that being cared for by the family, is the only option.

A person with disability said, "That I am disabled, is unfair. They must look after me because they are not disabled. I will not be independent, if I do everything myself, they would not help me."

In China, parents are the highest authority in the family. To maintain family harmony, children are brought up to be obedient, to show proper conduct, to control emotions, personal desires, and impulses, to show achievement and acceptance of social obligations, instead of being trained to function independently.

Chinese people are able to sacrifice themselves for their family members. They tend to seek help from immediate and extended family first before turning to neighbors, friends, communities and professionals. Since respect for the elders and filial piety are so important, it is very natural that the non-disabled members actively take over the responsibility from their parents to look after disabled siblings, and the family members with disability feel this is a common or natural thing.

Rehabilitation knowledge of Caregivers

The results show that 39.4% caregivers of people with disablities have no knowledge of rehabilitation. In the rural area, nearly half (48.0%) of the caregivers do not have rehabilitation knowledge. The main avenue of obtaining rehabilitation knowledge is through nursing practice.

Nearly half (47.6%) the female caregivers have no rehabilitation knowledge. Whether male or female caregivers, their main source of obtaining rehabilitation knowledge is also through caring practice.

A rural family member said, "It is said we have to register for training in the city, and pay much money to attend a training course. No, I will not attend it. The money should be spent on other things. And that training is not often held. Even if I attend, I worry that I will not be able to understand what they teach."

"Yes, I heard about some professional training, but that is not for us, it is for doctors. In fact we need to learn some simple knowledge that is good for people with disabilities."

An urban lady said, "I have to work everyday, and have many things to do. I want to buy some books or get some training. But I have not arranged that so far. I will do that. It is good that he has acclimatised himself to daily life. I listed a detailed activities schedule for him."

Some caregivers think that it is enough to know some rehabilitation knowledge through nursing practice.

"I am afraid that is not very necessary for us, he is familiar with his disability, he can care for himself well enough. As a caregiver, I do not want to learn that. "

The reasons for caregivers' lack of rehabilitation knowledge were explored. They either have no chance to learn, or no time, or no money to pay and learn or no interest in learning. Also, some of them do not want to learn.

Free help

Here the "free help" means help that is not from family, but from community, society or governments. This help includes professional help, such as physiotherapy, home exercise guidance; also includes regular help for ADL, such as eating, bathing, toileting, and so on.

Most of the people with disabilities cannot get free help regardless of where they are.

In the urban area, the street clinics, which are the most immediate level of heath care in urban neighborhoods, serve as places where people with personal problems can go for advice or help. Medical workers in these clinics can give all the local residents basic medical guidance and help. However these services are usually not free. On some special days, like the National Day of Helping the people with disabilities, the local people with disabilities can get free help from the community health care, such as rehabilitation consultation. However, these special days are not more than five days per year.

There are no differences between males and females with disabilities regarding "free help".

Still a developing society, China is reforming its political and economic systems. Social welfare is not developed so it is impossible for the burden of the people with disabilities to be borne totally by society. As many people with disabilities expressed, their lives are better than before, but they are suffering from a lack of free help

A rural person with disability said, "There is no free help, we have to pay to get some professional therapy from a community clinic. We must pay even more if we go to see doctor in big hospital. Rehabilitation exercises for disability need a long time, need a lot of money..."

"Sometimes the community leaders or the staff of the organisation for people with disabilities come to see me with some present on the Spring Festival or the National Day of helping people with disabilities."

An urban person with disabilities expressed his understanding of the government's achievements, "I feel that people with disabilities are getting more and more attention from government in recent years. The number of people with disabilities in China is too large. Government has difficulties in helping all people with disabilities at the same time. Some years ago, it seemed that nobody was concerned with people with disabilities."

DISCUSSION

The findings of this study indicate there are many differences between rural and urban people with disabilities; and between males and females with disabilities. An overview of these findings shows that rural people with disabilities have more difficulties in life than urban people with disabilities. Most of the rural people with disabilities are peasants; suffering from the problems of poverty. Because of poverty, transportation difficulties and limited sources of information, many needs of rural people with disabilities cannot be met. Comparatively, the life of urban people with disabilities is better. Urban people with disabilities have more opportunities of obtaining more services, more care and more attention from society. Therefore, it is easier for urban people with disabilities to benefit from the social services.

Although the situation of Chinese people with disabilities is improving, there is scope to improve further. The number of Chinese people with disabilities is large, and increasing. Most people with disabilities live scattered in remote rural areas and outlying regions, so some of the work for people with disabilities suffers from lack of finance and human resources. Some laws and regulations for people with disabilities are not completely implemented by local governments, which means some of the rights of people with disabilities are not protected.

It is important for a person with disability to participate in social life, which is also the final goal of rehabilitation. This study shows peoples with disabilities have many difficulties in their attempt to integrate into society. Most of the peoples with disabilities have difficulties in getting married, especially to a non-disabled person. The traditional notion of marriage is one of the reasons. Chinese people and their families find it difficult to accept a person with disability as a family member.

Regarding the independence of peoples with disabilities, it is found that more females with disabilities prefer to work outside home than males. At the same time, another finding of this study shows that males are more like to show self-worth through employment, especially in the urban area. These two findings seem to be contradictory. However, it could be understood that "showing self-worth" is one of the purposes of employment for a male with disability, but may be he prefers to be employed by himself at home, not in public. The purpose of employment and work outside home are two entirely different things.

This study shows that almost half of the people with disabilities have "no need" of employment. In addition to the external reasons, such as a difficult employment situation, stigma, etc, it should not be ignored that some people with disabilities themselves lack the consciousness of what independence can be. They depend on their parents, siblings and society. Therefore, the more important thing is to encourage them to be independent, rather than supply them with material goods.

Another reason for "no needs" is that some people with disabilities have not realised the importance of some needs that they should have. For example, some feel they do not need rehabilitation knowledge, because they feel the pressure of stigma and lack of confidence to face a disabled life; therefore, they think rehabilitation is vuseless". Moreover knowledge is always being updated. This also means that people with disabilities need to pay attention to improving their position in society. It is important that organisations for people with disabilities should disseminate the updated rehabilitation ideas and knowledge.

Because the comprehensive education level of urban people with disabilities is higher, the need for rehabilitation knowledge expressed by them is more. At the same time, some of the people with disabilities need their family members to gain some rehabilitation knowledge to care for them better. A good way to help people with disabilities in present-day China is by providing rehabilitation knowledge to them and their family members.

Barrier-free environment reconstruction is an inseparable part of rehabilitation measures for a person with physical disability. A considerable number of people with disabilities in this study have declared that they do not need it. The reasons were poverty and no one to help. Furthermore, that people with disabilities made light of the role of barrier-free environment in their daily life.

Most families in China have TV and radio, and these have become the main tools of obtaining information, especially in rural areas, although the information that people with disabilities can receive from TV and radio is not much. In these circumstances, government should issue more relevant information through TV and radio in order to reach more people with disabilities.

Besides acupuncture, massage, etc., the traditional herbs are quite widely used by people with disabilities. TCM is encouraged and advocated by the government to be developed and to play a role for people with disabilities as much as possible in China. As a result, it is becoming more and more important for people with disabilities.

This study brought out the stigma of the people with disabilities along with their inferiority complexes. Socially, disability creates great disadvantages for people with disabilities that many people want to avoid. They may be in the habit of thinking of disability as total, believing that a person with disability is disabled in all respects. So people with disabilities may fear that if they identify themselves as disabled, others will see them as wholly disabled and fail to recognize their remaining abilities, or perhaps worse, see their every ability and achievement as "abnormal".

Stigma is one of the causes of the discrimination, much more than the disability itself. It could be argued that the disability itself is not the cause; the social reaction to disability is the cause. It is very important for everyone, including people with disabilities themselves to reject the stigma and disability-based discrimination.

Improving services for people with disabilities

People with disabilities have various needs, many of which may be difficult to address. This study highlighted some factors that influence the needs of people with disabilities themselves, their families, society and government.

Firstly, the people with disabilities are generally in a lower position. The stigma from disability makes them usually passive in participating in family and social life, in receiving education, in looking for employment, in communicating with others, even in receiving rehabilitation. Because of their "silence", it is easy for them to be ignored by society; their needs and desires are easily hidden; and non-disabled persons think they have no problems.

Secondly, the family members of people with disabilities also are too "quiet". Family members also suffer the stigma against the family. So the family members should try to overcome difficulties with people with disabilities and actively participate in social life. At the same time, all family members could associate with each other and establish their own organisation to appeal to society and government to pay more attention to people with disabilities, to protect the rights of people with disabilities. There are very few self-organised associations of people with disabilities or family members.

Thirdly, the government plays an important role in meeting the needs of people with disabilities. Although the number of people with disabilities in China is so big, and most of them live in wide-spread rural areas, the government could make more favorable regulations in order to meet their needs step-by-step.

Fourthly, the social atmosphere needs improvement. Discrimination of and prejudice against people with disabilities should be prevented.

However, services are unlikely to develop in rural areas immediately . where disability is so closely correlated with poverty. The government policies have many articles that state that not just the State but also the whole of society, has a duty to support people with disabilities in prevention, rehabilitation, education and employment programmes. This is consistent with the general direction of social welfare policy. But policy statements seldom distinguish between commercial and non-profit activity. Hence, the current policy is still a highly restrictive legal environment for non-profit activity for people with disabilities.

Community-based Rehabilitation for people with disabilities

It is necessary to further facilitate the CBR programme, to activate people with disabilities themselves, their family members, and all citizens, especially in rural areas, to enhance dissemination of rehabilitation knowledge, to train people with disabilities and their family members, and to create chances of employment.

In fact, China Disabled Persons Federation (CDPF) has already done much of this. It is quite important to enhance the cooperation of several divisions of government for implementation of the CBR programmes. These divisions should include the health system, the civil affair system, the education system, the finance system, etc. The key point is which role these divisions should play. As long as people with disabilities themselves, family members, and society act together and cooperate in an organised manner, people with disabilities could benefit from CBR programmes. The complexity of CBR is the result of the current concept that CBR programmes should be multi-sector (or multi-disciplinary) so that they can provide assistance in all of the areas, which are central to improvement of the quality of life of persons with disabilities. This complexity recognises the need for close coordination, collaboration and cooperation between governmental and non-governmental organisations of all types and at all levels.

This research has only selected persons with physical disabilities as respondents. The findings are only related to them. People with different types of disability have different needs. Two individual people with disabilities have different needs due to their different living areas, different economic conditions, different educational backgrounds, different understanding of rehabilitation, etc. Therefore society should actively supply services for people with disabilities, and encourage them to become independent and participate in family life and social life. It is society's obligation to create necessary conditions for them to bring their abilities into full play. China is experiencing a transition from a society in which people are adequately fed and clothed to one in which people enjoy a comfortable life. Whether people with disabilities can keep abreast of the rest of the nation in social development and the attainment of prosperity not only concerns the 60 million people and their families accounting for nearly one fifth of the nation's total as well as their relatives in the hundreds of millions, but also affects various aspects of society. It is an important question bearing on China's development, social stability and further emancipation of productive forces.

^*China Rehabilitation Research Centre
Beijing Medical University
School of Rehabilitation Medicine
e-mail: norwayuio@yahoo.com.cn

REFERENCES

1. China Disabled Persons' Federation.China's five-year work programme for people with disabilities(1988-1992). 1988.
2. Work report materials on disability of Dingxi country, 2003 (Chinese version).
3. China Disabled Persons Federation, http://www.cdpf.org.cn/zhengce/xg-zl-006.htm (Chinese version).

PUBLICATIONS FROM CENTRE FOR DISABILITY STUDIES, UNIVERSITY OF LEEDS

In or Out of the Mainstream?
Lessons from research on disability and development cooperation
Edited by: Bill Albert

The Social Model of Disability: Europe and the Majority World
Edited by: Colin Barnes and Geof Mercer

Disability Policy and Practice: Applying the Social Model
Edited by: Colin Barnes and Geof Mercer

Implementing the Social Model of Disability : Theory and Research
Edited by: Colin Barnes and Geof Mercer

Published by:
Centre for Disability Studies, School of Sociology and Social Policy,
University of Leeds, Leeds LS2 9JT, UK.

Further details from:
Marie Ross, Tel: +44-113 3434497, fax:+44-113 3434415,
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