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Disability and povertyA global challenge$

Arne H. Eide and Benedicte Ingstad

Print publication date: 2011

Print ISBN-13: 9781847428851

Published to Policy Press Scholarship Online: March 2012

DOI: 10.1332/policypress/9781847428851.001.0001

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Disability, poverty and healthcare: changes in the canji (‘disability’) policies in the history of the People's Republic of China

Disability, poverty and healthcare: changes in the canji (‘disability’) policies in the history of the People's Republic of China

Chapter:
(p.31) Two Disability, poverty and healthcare: changes in the canji (‘disability’) policies in the history of the People's Republic of China
Source:
Disability and poverty
Author(s):

Heidi Fjeld

Gry Sagli

Publisher:
Policy Press
DOI:10.1332/policypress/9781847428851.003.0003

Abstract and Keywords

This chapter aims to provide an overview of the development of disability policy in the history of the People's Republic of China (PRC). It argues that seen in the perspective of the PRC's political history, the new health reform that was launched in 2002 indicates a significant turn in the party-state's disability policy. This recent phase is characterised by a focus on general welfare services, rather than preferential treatments, and reintroduces the party-state as a major agent in the field of disability. International studies point to poverty and disability being mutually constituted in the sense that people with disabilities are often trapped into poverty because of exclusion from social, economic, and political opportunities, as well as the financial burden related to their impairments; while poor people, with limited access to adequate services, often risk illness, injury, and impairment.

Keywords:   PRC, China, disability policy, health reform, welfare services, social exclusion

Introduction

The Chinese economy is one of the fastest growing economies in the world today, but the growth is to an increasing degree unevenly distributed. Large parts of the population in rural areas, especially in the western provinces, remain economically marginalised and poor, while urban coastal centres prosper (Ravallion and Chen, 2004; Dalen, 2006; Fan and Sun, 2008). International statistics point to three particularly vulnerable groups in the economic development in the People's Republic of China (PRC) today: minority ethnic groups, women and people with disabilities (ADB, 2004; Edmonds, 2005). This chapter concerns the latter. Lack of access to adequate healthcare and impoverishment due to healthcare expenses are currently perceived as crucial issues causing poverty, particularly in the poor rural areas. Earlier studies have shown that the causes of poverty for many Chinese households were related to family members' health problems (Wang et al, 2005). Such medical poverty traps manifest particularly in households with people with disabilities as their extra needs of rehabilitation and healthcare services constitute a substantial economic burden (see, for example, Wang et al, 2008).

The Chinese authorities have in recent years launched new welfare programmes to address some of the new problems of inequity and poverty (Liu and Rao, 2006; Li et al, 2008). Since the late 1980s, the Chinese authorities, through the China Disabled Persons' Federation (CDPF), have addressed the poor living conditions of people with disabilities through several major plans of actions (CDPF, 1998; Shang, 2005). More recently, from 2002, the New Rural Cooperative Medical System (NRCMS, xinxing nongcun hezuo yiliao zhidu) has been piloted (Wang et al, 2005; Liu and Rao, 2006; Zhang et al, 2006). This scheme addresses the general rural population, and not specifically people with disabilities. The NRCMS has nationally, as internationally, been presented as a very positive development with regard to poverty alleviation in rural areas (You and Kobayashi, 2008). The question remains whether or not it can also be expected to create a positive (p.32) impact on the economy of poor households with disabled members living in rural areas in the PRC.

This chapter aims to provide an overview of the development of disability policy in the history of the PRC. We argue that seen in the perspective of the PRC's political history, the new health reform that was launched in 2002 indicates a significant turn in the party-state's1 disability policy. This recent phase is characterised by a focus on general welfare services, rather than preferential treatments, and reintroduces the party-state as a major agent in the field of disability. In the 60 years since the founding of the PRC in 1949, China has undergone a series of dramatic changes, from revolution, socialism and collectivism, to de-collectivism, implementation of liberal market economics and privatisation of welfare services. The political organisation of these different periods altered the everyday life of Chinese citizens extensively, penetrating all aspects of life, from family relations and household organisation, to healthcare and access to services. In this chapter we describe some of the ways in which these political changes have influenced the lives of people with disabilities and their families, particularly in terms of care, health and access to rehabilitation.

Our focus is primarily on the interconnections of health, poverty and disability. Other interesting and important issues, such as the history of special education, the development of the legal framework for employment and education and the work for human rights for people with disabilities will not be included.2 The material is drawn from literature on healthcare and social welfare for the general Chinese population, from family policy, from literature on the development of the disability movement, as well as literature focusing specifically on people with disabilities in the PRC.

Our starting point is the double-way relation between impairments, disability and poverty that has often been described as a ‘vicious circle’ (Yeo and Moore, 2003, p 572). International studies point to poverty and disability being mutually constituted in the sense that people with disabilities are often trapped into poverty because of exclusion from social, economic and political opportunities, as well as the financial burden related to their impairments, while poor people, with limited access to adequate services, often risk illness, injury and impairment (Yeo, 2001; Yeo and Moore, 2003). By looking first at the direct and indirect implications of the political-economic organisation of the situation for people with disabilities and the development of a particular disability movement, we discuss the new welfare reform and its potential implications of poverty relief for people with disabilities and their families.

Interconnectedness of statistics and disability definitions

According to a recent national survey (2006–07), there are nearly 83 million people with disabilities in the Chinese population of 1.3 billion (CDPF, 2008). Seventy-five per cent (62 million) of the 83 million live in the countryside and (p.33) 21% (13 million) of these live in poverty with an income of the total household of less than ¥2.5 (US$0.37) per day (Ministry of Health et al, 2007).3

According to the 2006–07 survey, the population of people with disabilities thus constitutes 6.34% of the population.4 In comparison, the first national survey conducted in 1987 established that there were in total 60 million people with disabilities in the PRC, which at that time made up 4.9% of the Chinese population. Although the disability rate in the recent survey is higher than in the 1987 survey, from an international perspective, it is still low. The Chinese authorities themselves report that although a 10% rate is commonly accepted internationally, the rate is lower in the PRC due to a more stringent [sic] disability criteria used in the Chinese national surveys than elsewhere (CDPF, 2008).5

Chinese authorities currently define a ‘disabled person’ (canji ren) as:

… one who has abnormalities or loss of a certain organ or function, psychologically or physiologically, or in anatomical structure and has lost wholly or in part the ability to perform an activity in the way considered normal. The term “a person with disabilities” refers to one with visual, or hearing, or speech, or physical, or intellectual, or psychiatric disability, multiple disabilities and/or other disabilities.

(Law of the PRC on the Protection of Persons with Disabilities, 2008)6

This definition reflects the strong medical focus in disability policies in the PRC. Disabilities are understood as defects, that is, ‘impairments’, perceived to be located in an individual person's body-mind. Such medical understanding is also reflected in the Chinese term used in the official definition. Canji consists of two words, where can denotes ‘incomplete’, ‘deficiency’ and ‘injury’, while ji refers to ‘disease’, ‘suffering’ and ‘pain’, thus indicating a closer link between impairments of the body-mind and disability than that conveyed in the English translation (Guo et al, 2005, p 51).

Canji is one of many words that have been used to denote people with disabilities in Chinese societies in the past and the present. It is increasingly used in public and in the discourse of everyday life and found to be less stigmatising than terms that were more common earlier, such as canfei (‘useless’, ‘disabled’ – fei denotes ‘waste’, ‘useless’), quezi (‘crippled’), bu quan de (‘deformed’, ‘not complete’) and wuguan bu zheng (‘the five sense/organs – not orderly’).7 Although perceived to be less stigmatising than, for instance canfei, canji is not neutral, however. The canji term has a long recorded history in the vocabulary of the Chinese bureaucracy – it has been found in records that date back to the legal and administrative codex of the Tang dynasty (618–907 AD), but is probably even older (Ho, 1959; Stone, 1999; Kohrman, 2005). In the Tang bureaucracy, canji was used in contrast to the administrative category ding, denoting ‘normality’. Canji was one subcategory of those ‘not ding’, that is, all those who differed from the administrative norm, including childless widows and widowers, orphans and those who were unmarried. Also ‘not ding’, canji referred to those partially disabled, while those seriously (p.34) disabled were classified as feiji, and those totally disabled as duji (Stone, 1999, citing Twitchett, 1970). Thus, although new medical meanings have been attributed to canji in the modern disability discourse, the term has a long history of negative connotations reflecting abnormality.

Despite the lack of neutrality, canji has, since the 1980s, been the term promoted by the powerful CDPF. While canji is an historical term, it was not until the development of a disability movement and a disability policy in the 1980s that the term took on its present encompassing characteristic. The need for an official definition of disability became apparent throughout the 1980s, when preparations for the first national survey on disability were ongoing. Kohrman (2005) has offered a detailed account, demonstrating how the decision on the set of disability criteria that was finally applied in the 1987 survey was a result of complex, highly politicised processes. He argues that it was a prime concern for the researchers conducting the survey that the result would demonstrate an acceptable disability rate of the Chinese population. If the rate was too low, they feared that the international scientific community would hold the researchers to be incapable of conducting surveys. At the same time, if the rate proved to be too high, this would indicate that the quality of the Chinese population was poor. These, as well as a broad range of other concerns, were negotiated in a politically tense atmosphere in which the national pride of the PRC as a modern, scientific, civilised nation was felt to be at stake.

In addition to the concern of status of the Chinese population, budget consideration is another obvious reason to keep the disability rate low. By obtaining disability status, a person may access preferential treatment such as poverty loans, special employment and tax reduction, etc.8 As the size of the Chinese population is large, slight adjustments of disability criteria may have a tremendous impact in terms of numbers with the right to access to such privileges.

Initially developed in the 1980s, the narrow disability definition focusing on certain impairments has remained fundamental to the Chinese disability discourse and policy making. This is also reflected in the continued use of the categories of impairment applied in the recent (2006–07) nationwide survey on disability. Being contested in the international disability movement, the medical model has also been criticised in the PRC. In the report following the 2006–07 survey it was stated that: ‘It is inadequate to conduct disability identification and classification with the focus on physiological structure of individuals alone. Attention should be given to functional barriers and social adaptability’ (CDPF, 2008). However, it is difficult to see how a social model of disability has been applied in the actual survey.9 With the use of such a so-called ‘stringent’ definition, a large population of people who experience reduced opportunities to participate in society are being excluded from access to disability privileges.

Since the 1980s, the main agents with regards to responsibility for provisions of care and services for people with disabilities have been the individual households with disabled members, the CDPF and the party-state. In the following we discuss (p.35) some of the ways that the roles of each of these agents have changed throughout the various political periods following the establishment of the PRC in 1949.

Disability and the family in the PRC

Disability policy in the PRC is, as elsewhere, a recent phenomenon. Throughout Chinese history, people with disabilities remained the responsibility of the household, perceived much in the same way as care-taking for the sick and the elderly.

Although the role of the household has varied throughout the political periods of the PRC, there is a clear continuity in the morality of care-giving within filial relations found in households with members with disabilities in today's PRC. Although little has been published about disability in the periods before the establishment of the PRC, all indications suggest that care was provided through the family (Zhou, 1997; Miles, 2000). Traditional Chinese families were often organised into larger households in which several generations shared the house and economy and where the distribution of rights and obligations were defined by relational statuses (Davis and Harrell, 1993). Within these households, the rules and practices of filial piety were most important and strictly followed (Kohrman, 2005, p 150). In the filial relations, care-taking was a central duty, so that parents were obliged to take care of their children and later, when the parents grew old, their offspring would return their duty and care for them.10 Some literature suggests that the value of taking care of all the children, independent of ability, was emphasised within this morality (Phillips, 1993; Callaway, 2000). However, most likely there were great variations in how filial obligations were practised in the cases of disability. Until recent times, families with members with disabilities had very few options available outside the household, and widespread informal welfare arrangements for people with disabilities were very limited in traditional Chinese communities. There were, however, some special schools for blind and deaf children set up, first by Christian missionary groups in the 19th century and later by a few Chinese philanthropists at the beginning of the 20th century, but these were limited both in numbers and in their social and geographical distribution (Epstein, 1988; Yang and Wang, 1994). The distribution of these schools reflects the lack of a common policy at the time as they were available to very few people and in very few places. Before the establishment of the PRC, ‘disability’ was thus not a category relevant for policy making, and people with disabilities remained primarily the responsibility of their parents and secondarily their natal household.

The revolution and the following formation of a communist state in 1949 marked a dramatic shift in the ways in which the state handled the health and well-being of its citizens (Saich, 2004). While there had been little contact between the individuals and the state before 1949, the communist government introduced a new totalitarian regime, bringing all individuals close to the new state. From the end of the 1950s, the collective period not only completely redefined the economic and social organisation of the country, but also introduced new criteria for classifying the population. Social class and political attitudes were the (p.36) fundamental categories, while individual characteristics such as disability were an irrelevant criterion in this new political organisation (Kohrman, 2005, p 151). Thus, in terms of policy making, disability remained outside the interests of the party-state, and people with disabilities were perceived as citizens of collective units, much in the same way as people without disabilities.

The collective period brought suffering, famine and conflict to large parts of the Chinese population. The dramatic political and socioeconomic reorganisation also intended to undermine the role of the family, as the main unit to which the individual belonged was now the collective brigades. However, looking at the role of the family and its care-giving practices for members with disabilities, the implications of collective organisation seem to have been largely positive. First and foremost, the collectives were part of an economic organisation in which individual productivity was given less importance and where the needs of all citizens were guaranteed by what was called the ‘iron rice bowl’. Access to collective goods was not solely based on work ability but also decided by the cadres based on the individual's needs, political attitudes and social class. Hence, the households of people with disabilities did not manifest as economically destitute compared to other households. Moreover, as mobility was restricted and household members were forced to remain within their natal village, demographic conditions ‘conducive to large multigenerational households with extensive economic and social ties to nearby kin’ were formed (Davis and Harrell, 1993, p 1).11 Within these extensive kindred networks, providing for people with disabilities, as well as elders, remained an integrated and important task.12

Invisibility of disability

The birth of the PRC thus redefined the categories for social classification in China. During the three first decades of communist rule, disability was not one of the categories of political significance. People with disabilities were seen as members of the masses and disability was handled in much the same ways as other particular needs, that is, by the morality of mutual assistance in filial relations primarily, and the network of kin and community secondarily. The lack of an organisational disability category was also reflected in the lack of a disability movement and, moreover, a disability policy.

With the political changes following de-collectivisation, the new leadership of the Chinese Communist Party (CCP) concerned themselves with disability for the first time. The new development of a disability policy is, nevertheless, founded in the idea that the immediate family, that is, parents, remain the central care-taking social unit in the PRC, although in a different context from that of the collective era. With the development of a market economy and, in that, a new emphasis on productivity and economic success as well as the privatisation of welfare and healthcare, the traditional family ideal has increasingly been challenged, not only for households with disabled members (Phillips, 1993), but for Chinese families in general.

(p.37) Birth of the canji (‘disability’) policy of the party-state

The consequences of the dramatic turns in policy effectuated by Deng Xiaoping (1904–97) and the new leadership that came into power after the death of Chairman Mao Zedong (in 1976) comprise radial changes also concerning aspects related to disability and poverty. The policy of de-collectivisation, privatisation and increased international contact initiated by Deng Xiaoping, and continued under the leadership of Jiang Zemin (president from 1993–2003) and Hu Jintao (2003-), has been extremely successful with regard to economic growth for a large part of the Chinese population (Naughton, 2007). However, how the new sociopolitical conditions resulting from these new policies influence the lives of people with impairments and the households to which they belong is far more complex and uncertain.

Importantly, during the 30 years with economic and political reforms, impairments have emerged as an issue to which the Chinese party-state has paid attention and in the same period canji ren (‘disabled people’) has appeared as a category in use, both in political and public discourse. People with body-mind variations were no longer simply perceived as members of the masses classified on the basis of their class background and political attitudes, but rather as a group with particular characteristics. The establishment of the category of canji ren led to a new classification of people as able/disabled on the basis of their forms of impairments. In this same period, a disability movement developed, in the form of the CDPF, along with the birth of a disability policy adopted by the party-state. Both these developments have dramatically shaped the perceptions of what it means to be canji in the PRC today.

A new population policy: reducing quantity and enhancing quality

The establishment of the CDPF has sometimes been seen as the start of disability policy in the PRC (Kohrman, 2005). This is true in the sense that its establishment marks the start of explicit policies for protecting and rehabilitating people with disabilities. However, the disability policy of the party-state consists of two widely different approaches, of which protection and rehabilitation is only one. The first policy dealing with disabilities to be introduced in the PRC was the new population policy already implemented in 1979 (Stone, 1996; Greenhalgh and Winckler, 2005; White, 2006).13 This population policy programme had two main aims: to reduce quantity, through the one-child policy, and to increase quality, through eugenics. While the one-child policy is much researched, the extensive use of eugenics in the PRC is less well known internationally. The implementation of this population policy inevitably nourished the growth of an awareness of impairment as something undesirable and unwanted. During the early 1980s, ‘disability’ was thus coming into being in public discourse, accompanied with negative connotations.

(p.38) The distinction between measures aiming at prevention of disabilities and policies with a focus on protection and rehabilitation is well known in many nations (for example, Abberley, 1987; cited in Stone, 1996, p 480). Nevertheless, the PRC is a different case in point, as the policy of prevention of impairments has been so powerfully enforced as an essential component of the national ‘one-child policy’. Under Chairman Mao, the great Chinese population size was perceived as a contribution to the strength of the nation, and Mao encouraged families to have many children. It was only after the change in leadership following Mao's death that population growth was perceived as a serious threat to the modernisation and economic development of China, and birth planning became one of the central concerns in the overall national policy.

Eugenic ideas that had reached China from Europe at the end of the 19th century had already been popular among leading intellectuals in the 1920s and 1930s. At that time, eugenics was thought to offer an explanation for the backwardness of China, and birth control through eugenic methods was considered as a way for the nation to regain vigour and strength (Dikötter, 1992, 1998; Stone, 1996). These ideas were rehabilitated and put into practice by the new leadership in the 1980s.

Both the quality and quantity aims of the one-child policy have recently been re-confirmed by the new Law on Population and Birth Planning (2001).14 It states, in Article 11, that its aims include ‘not only the protection of the health of mothers and children but also the enhancement of the quality of China's population’ (Palmer, 2007, p 689). The one-child policy has seriously affected and continues to affect individual families in the PRC. Disability is an explicit concern in certain aspects of the practice of the one-child policy, and the birth of a child with an impairment is one of the particular circumstances in which a married couple is allowed a second child (White, 2006, p 200; Palmer, 2007, p 688).

Detecting impaired foetuses requires advanced prenatal test technologies, which is both costly and, at the end of the 1970s, was hardly available in the PRC. Public resources were supplied for the development and later massive distribution of such technologies. Today, extensive use of prenatal testing aimed at preventing impairments and serious genetic conditions exists throughout the country, even in the most remote corners of the Chinese countryside. The vast distribution of this technology coincided with the privatisation of health services in the 1980s and prenatal testing became one of the ways for the health institutions to secure their income. In addition to the use of prenatal testing, abortion and sterilisation are important means in birth control campaigns. In cases where impairments are found during pregnancy, abortion is strongly recommended to the mothers. Moreover, sterilisation is used in certain cases (White, 2006).

In addition to general campaigns, birth control efforts focus specifically on childbirth among people with disabilities. Although people with disabilities are allowed to marry, they are only allowed to have a child as long as there is no risk that their impairments are hereditary (Stone, 1996, p 474).

(p.39) The one-child policy thus introduces the explicit concern with disability from the party-state in the PRC. It does so by developing policies that seek to prevent the birth of children with disabilities, and later to prevent those with hereditary genetic conditions to reproduce. This is, however, only one of the aspects of disability policy in the PRC and we now turn to the second aspect, namely, the policy concern with the protection and rehabilitation of people with impairments.

CDPF and the formation of the canji policy

During the same period as the Chinese party-state allocated huge resources for the prevention of unwanted impairments, a state-supported disability movement developed. CDPF was established in 1988 and has, during the course of 30 years, developed to be a significant influence in Chinese social and health policies. Thus, on the one hand, with CDPF as the main agent, a policy of protection and rehabilitation of people with disabilities was developed, and on the other hand, a policy of prevention of impairments was implemented. However, although these two policies seem to approach ‘disability’ quite paradoxically, the two seem to go hand in hand in China. Arguably, what the two widely different policies have in common is that they demonstrate that ‘disability’ is taken seriously as a phenomenon and a category by the party-state (Stone, 1996).

There seem to have been three main factors that both enabled the establishment of the CDPF and, more importantly, led to its extremely powerful position within Chinese power circles. Matthew Kohrman (2005), in his extensive study of the CDPF in the 1980s and 1990s, shows how CDPF is a product of, and at the same an answer to, a complexity of the sociopolitical conditions resulting from Deng Xiaoping rising to power in the late 1970s. The three factors are all connected to Deng's introduction of a new policy: first, to the new socioeconomic conditions within the country; second, to the new increased communication with the international community; and last, the access to power through the kinship between the founder of the CDPF and Deng Xiaoping.

With the economic reforms following de-collectivisation, the individual's ability to be economically productive, and thus to contribute to the economic growth of the Chinese nation, was again emphasised. With the new economic organisation it became apparent that some were less able to produce, such as households with members with disabilities, and that these could not benefit from the opportunities offered by the new economy. Many of these households then became poor or were stuck in poverty. Thus, the new economic reforms within PRC produced needs for assistance for disadvantaged groups, among them people with disabilities and their families.

This new awareness of disability as a concern within the new Chinese economy coincided with an international focus on disability policy, exemplified by the United Nation's (UN's) International Year of the Disabled People in 1981 and, later, the UN's Decade for Disabled Persons, 1983–92. Deng's open-door policy provided increased opportunities for international contact and influence, in (p.40) particular for the Chinese elite who, from their international contacts, became aware of this focus on people with disabilities held by the international community at the time. The international discourse clearly held a nation's capability of providing necessary assistance and care for people with disabilities and other groups of disadvantaged people central in development into a modern and civilised state. At the time the prime concern of the new leadership was the transformation of the PRC into a modern state. Kohrman argues that the ability of CDPF leaders to situate disability assistance as useful to the nation and to the CCP was part of CDPF's success (2005, p 32).

Yet, even more than the two above factors, the role of one person was instrumental in the development of the CDPF. This person is the son of Deng Xiaoping, Deng Pufang (1944-). His personal history is very important. During the Cultural Revolution, he was paralysed after falling down from a fourth floor while being interrogated by the Red Guards. After his father came to power, it was arranged for Deng Pufang to travel to Canada where he was offered help from modern, high-technology medical care and rehabilitation services. Back in China, and inspired from what he had experienced in Canada, he eagerly promoted the idea of developing similar opportunities for people with disabilities in the PRC. Deng Pufang was a main actor in the establishing first, the Foundation for the Disabled Persons in China in 1984 and then the CDPF in 1988, and was the influential chairman of CDPF for 30 years.15

With Deng Pufang as its leader, CDPF benefited from the power attributed to him as the son of the prime leader of the party-state. CDPF's close interconnectedness with the party-state makes it stand out as special case compared with disability associations in other countries. CDPF has commonly been described as a semi-non-governmental organisation (NGO) and a semi-ministry. In the course of a 30-year period, the Federation has increasingly become an integrated part of the central state administration. Today CDPF is commissioned by the CCP to supervise affairs relating to people with disabilities in China, and it is the responsible organ for the development, as well as the implementation, of many of the disability policies in general. Today, CDPF presents itself as a nationwide umbrella network, reaching every part of China with about 80,000 full-time workers (CDPF, 2009).

CDPF's services and the promotion of the ‘the able disabled’

As an integrated part of the development of CDPF, canji (‘disability’) as a category has been clearly defined as an organisational category, and canji ren (‘disabled people’) have become an increasingly visible part of society (Stone, 2001; Dauncey, 2007). However, in the process of making disability visible, the ‘able disabled’ and those disabled who can become ‘able’ through proper care and rehabilitation have dominated public space.

Initially, Deng Pufang and his staff in CDPF concentrated on the establishment of rehabilitation medicine services, first and foremost by the founding of modern, Western-style, high-technology rehabilitation medical facilities. The China (p.41) Rehabilitation and Research Centre in Beijing (established in 1988 as the first of its kind in China) is the model example of this development. Most of the activities in CDPF's early phase were urban programmes that did not target the majority of the population living in rural areas. Even with the later introduction of community-based rehabilitation (CBR), the CDPF could not, due to limited funding, provide substantial assistance to people with disabilities in the rural areas (Kohrman, 2005, p 163).

Throughout their history, CDPF establishments have primarily hired and served male urban people disabled with physical impairments, those referred to by Kohrman as the ‘the most able of the disabled’ (Kohrman, 2005, p 109). CDPF services reflect the goals of the state-promoted economic liberalisation, as they assist people with impairments to become able, that is, ‘able’ to contribute to the economic growth and prosperity of the nation. Deng Pufang himself embodied this ideal way of being ‘disabled’. During the last decades, ‘able disabled’ have also become more visible in other arenas. People with impairments have enacted roles as patriotic heroes in Chinese films (Dauncey, 2007) and disabled champions from the international sport arenas have added to Chinese national pride (Stone, 2001).16

CDPF activities focus on medical rehabilitation, both in the form of centralised hospital services and as CBR. These continue to be based primarily in a medical understanding of disability. However, CDPF has more recently expanded its focus and is presently involved in a broad spectrum of issues and sectors beyond medical rehabilitation. These include legal work for protecting the rights of people with disabilities,17 education and employment programmes, cultural and sport activities, as well as poverty loans and other economic preferential treatments (Shang, 2005; CDPF, 2009). Yet, even with these new services and programmes, the idea of rehabilitation, although in a broader sense, continues to be an explicit focus for the CDPF (CDPF, 2009).

Importantly, the narrow definition of disability used in official classification as well as a focus of effort towards ‘able disabled’ excludes a large population of people with disabilities from access to preferential treatments. Thus, until now, CDPF's services and preferential treatments have targeted a small group of the Chinese population of people with disabilities. Reflecting the encompassing power of the party-state, as well as the integrated position that the CDPF has in the political organisation, it was after a turn in national policy that CDPF recently started to emphasise services for people with disabilities within programmes for the general population.

Limits of market economy and the new welfare reform

Following the period of a strong belief that economic growth would eventually release the population from poverty, we see a turn in the focus of the CCP at the beginning of the new millennium. By that time and for over two decades, official statistics had already shown grim numbers about the health situation in rural areas. In 2002, 96% of the rural population was reported to lack any form of health (p.42) insurance and 38% was found to never seek medical help during sickness (You and Kobayashi, 2008).18 Liu and Rao argue that it was precisely the magnitude of medical impoverishment in the countryside that finally motivated the CCP to develop a new rural health reform (Liu and Rao, 2006).

In 2002, the China National Rural Health Conference was arranged in Beijing. National conferences are of utmost importance in Chinese politics as they are the arena where the CCP announces new large-scale policies and reforms. The Conference in 2002 was the first national conference on rural health in the history of the PRC, another indication of the limited focus on medical poverty and health inequity during the period of economic liberalisation in the 1980s and 1990s. The Conference marked the start of what we argue to be a new orientation in the health and welfare politics of the CCP's governance. Focusing less on productivity alone, the new health reforms are, to a larger extent than before, based on the idea that the state should provide welfare support to the population in need.

Although a reform primarily designed to target the poor rural population, it arguably also alters general policies on disability. Within the new health reform, the needs of people with disabilities are placed side by side with the needs of the general population in ways that share some similarities with the collective period. CDPF's policy today holds that people with disabilities should be encouraged to participate in those welfare schemes designed not specifically for the canji ren but the general population. At the same time, CDPF aims at influencing the formations of health reform to include medical services important to people with disabilities, such as rehabilitation. So far, they have not succeeded. However, while the CDPF's disability policy in the previous period focused on preferential treatments only, thus marking people with disabilities out as an exclusive group, the new welfare programmes include people with disabilities in the general schemes. As such, the new reforms might be seen to contribute to a mainstreaming of disability as a phenomenon.

The New Rural Cooperative Medical System (NRCMS)

Following the National Conference in 2002, a new health insurance reform was finally launched from Beijing.19 The insurance reform is called the New Rural Cooperative Medical System (NRCMS, xinxing nongcun hezuo yiliao zhidu), and was implemented in chosen pilot counties throughout the country from 2003. By the end of 2008, the NRCMS was intended to cover all the rural population in the PRC; however, its actual distribution remains to be seen (You and Kobayashi, 2008).

While the original Cooperative Medical System was financed by the welfare fund of the communes, this new reform is a voluntary health insurance system that is financed partly by the central government, partly by the local government and partly by the individual citizen. In 2008, the overall insurance per citizen in the poor rural areas was set to 100 yuan,20 of which the central and the local government subsidise 40 yuan each, while the individual citizen pays 20 yuan. The (p.43) fees paid by the individuals are kept in a commercial state-owned bank account, while the contribution is registered in a booklet kept by each person. The insurance is designed as a voluntary mutual assistance among farmers and covers primarily in-patient services and expenses related to what is called ‘catastrophic illnesses’.

There have been several evaluations of the implementation of the NRCMS in the pilot counties and they all indicate a remarkable widespread participation, with numbers at around 86% (Wagstaff et al, 2008; You and Kobayashi, 2008). With the well-established practice of over-reporting statistics from local to central government, these numbers should be seen as indications rather than objective figures. Because the insurance is based on voluntary participation on the one hand, and the administrators cannot refuse participation based on health conditions or elaborate needs on the other, the risk for adverse selection is high. The degree to which participation is voluntary also varies. The minimum participation in the poorer provinces is defined by central government to be 80%, and some reports show that local governments have exercised pressure on its population to reach high participation numbers (Hofer, 2009).

The insurance is designed to provide reimbursement for those medical expenses defined within the NRCMS. The reimbursement rates vary, according to a ceiling set for the various levels of treatments, that is, all expenses above the defined ceiling must be covered out-of-pocket by the patient. Due to the limited financial subsidies from the central government, the local authorities need to narrow down the medical conditions that the insurance can cover according to authorities' financial abilities. So far, the majority of the pilot counties have reimbursed expenses from in-patient care for what is defined as ‘catastrophic illnesses’, such as heart attack, cancer, stroke etc, and have not covered any out-patient care, including rehabilitation.21

The intention of the reform was to secure poor farmers from being impoverished due to costly out-of-pocket medical expenses and to increase access to healthcare. However, because of the limited means allocated to this reform, the reimbursement categories of medical conditions and the more general financial system of the health sector in the PRC, so far there has been limited impact on poor households in rural areas. Recent evaluations of the NRCMS have reported two main effects: first, that the use of medical services has increased in the NRCMS counties and second, and more surprisingly, that the out-of-pocket expenses of the individual patient have increased (Wagstaff et al, 2008). Moreover, the same evaluation shows that the effect, both negative and positive, of the NRCMS among the poorest 20% of the rural population has been very limited. Another evaluation states that for the poorest 10%, the NRCMS has not increased their use of health services at all (You and Kobayashi, 2008). For the poorest households, the upfront co-insurance rates are too high, and thus the rates exclude them from participating. For those who have managed to pay for the insurance, the reimbursement ceiling is too low for them to be able to use the health services without risking further impoverishment.

(p.44) The surprising increase in people's out-of-pocket expenses after the implementation of the NRCMS relates to a larger and more general field of problems, namely the privatisation of health services in the PRC. Starting in the mid-1980s, the financing of health services is now based on the ‘fee-for-service’ principle. De-collectivisation led to a change in the public spending on health facilities, and recent numbers from the Ministry of Health suggest that less than 5% of county hospital budgets and 10% of the township health centres' budgets are covered by the central government (You and Kobayashi, 2008). Limited funding leads to a potentially moral hazard on the side of the health provider as its main income will have to come from treatment and drug prescription. Various Chinese studies have shown extreme levels of over-treatments, both in the use of costly technology and drug prescription. One study concluded that in the investigated townships, less than 2% of the drugs prescribed were what they term ‘rational’, while only 0.06% of the drug prescriptions in the village clinics in the same townships were what they call ‘reasonable on medical grounds’ (Zhang et al, 2003).22

The fee-for-service system has led to a shift in the services offered by health clinics of various levels, from basic healthcare to more high-tech treatments. Basic healthcare is cheap and does not generate income for the health providers, so in many cases, basic treatments are therefore replaced with more expensive treatments, often including high-technological diagnosis and prescription of antibiotics. Moreover, the fee-for-service system has led to a continuous increase in prices charged for treatments, primarily because the health providers can define the prices of drugs and treatments without central governmental control. These factors raise the price of each medical encounter for the individual that, of course, has dramatic consequences for the poorest population.23

The new health reform, as manifested in the NRCMS, have so far not provided better healthcare to the rural, poor population. The NRCMS has been successful among those farmers and nomads with some economic means to pay the co-insurance fee, in the sense that their expenses have been cut in the cases of hospitalisation (related to catastrophic illnesses).24 In addition to the potential exclusion from the insurance programme due to the upfront co-insurance costs, poor people with disabilities and their household also lack a financial support system for rehabilitation and related medical and social services. Chronic illness and disability are not included into the category of ‘catastrophic conditions’, and rehabilitation expenses are therefore not reimbursed through the NRCMS. So far, the NRCMS has not challenged the vicious circle of poverty and disability.

Conclusion

In the PRC, as elsewhere, people with disabilities have proved to be among the poorest of the poor. The growth of the Chinese economy over the last four decades has been stunning, but groups of the population have not been in a position to benefit from the developments or to participate in the increasing wealth. The (p.45) divide between China's ‘haves’ and ‘have nots’ has become increasingly visible (Shue and Wong, 2007, p 1), and people with disabilities are over-represented among the ‘have nots’.

Our point of departure in this chapter has been the hypothesis of the ‘vicious circle’ between impairments, disability and poverty (Yeo and Moore, 2003, p 572). Much literature has pointed to the double-way process in which impairment leads to poverty and poverty leads to impairments, both in industrialised societies, such as Germany and the USA (Burkhauser and Daly, 1994; Berthoud et al, 1995), and developing countries, such as India (Harriss-White, 1999). Within this literature, access to adequate healthcare is emphasised as a significant and powerful policy to decrease the force of this vicious circle, both by reducing the financial burden of medical and rehabilitation treatment and thus enabling poor people to seek medical help in cases when risking illness or impairment and by limiting the development of disabilities for people with an impairment (Ingstad and Whyte, 1995; Yeo, 2001; Bonnel, 2002).

We hold that although the ways in which the interconnectedness between disability and poverty manifests and how related policies are developed and implemented in China obviously share some common ground with how such interrelatedness appears in other places, there are, as we have demonstrated, some features that must be seen as unique for China. One major characteristic for the Chinese situation is the series of political campaigns, reforms and changes carried out during the period of 60 years since the establishment of the PRC in 1949. We have highlighted the impact of the political changes for people with disabilities and the changing role of the major agents involved in the care and provision for them – the households, the party-state and the CDPF. Our aim has been, on the one hand, to focus on healthcare during these various political campaigns and on the other hand, to underline the disability policy (or the lack of one) of the party-state in the same periods.

The organisation and financing of healthcare services have also been highly influenced by the changing policies since 1949. More importantly, our emphasis on healthcare, and in particular on economic access to healthcare, reflects the importance of this issue in the present sociopolitical situation in the PRC. First, healthcare expenses have proved to be a main cause of poverty among the population in rural areas in general. Second, access to adequate healthcare and rehabilitation services are particularly critical for groups of the population with special needs for such services, and among them are many people with impairments. Without proper medical and rehabilitation services, acute illnesses may cause chronic, disabling conditions and without rehabilitation services, treatable conditions may remain disabling. Third, after decades neglecting problems related to healthcare and rural poverty, the central government has recently launched new forms of schemes, most importantly new forms of rural medical insurance, aiming at poverty reduction caused by healthcare expenses.

However, the new schemes have not yet benefited the poorest of the poor. Limited financial support from the central government is one main inadequacy (p.46) of the present system. Moreover, although the ongoing initiative is regarded as important and necessary, scholars have pointed out that ‘access is significantly influenced by modes of health financing and provisions that are closely tied into wider local governance systems and practices’ (Duckett, 2007, p 61). Thus, in addition to the current top policy initiatives, changes also have to be implemented at the local level.

As we have shown, the state policy towards disability has changed quite radically during the political history of the PRC: from being an almost non-existing issue in political discourse in the period of collectivism (in the 1950s, 1960s and 1970s), to the period of the economic reforms and opening up from the late 1970s until the 1990s, when the party-state developed a canji policy and the CDPF was established. More recently (from the beginning of 2000), the central government has begun to address the problems of the inequality of access to healthcare as well as education, security and other opportunities, with new programmes addressing the general rural population, for people with and without disabilities alike.

CDPF is an association worth paying attention to in the context of disability and poverty in an international perspective, not only because it has grown to be so powerful and massive in size in a relatively short time, but also because in important respects it differs from the disability associations known in other parts of the world. While many of the internationally known disability associations are NGOs with influential grass-roots engagement, a strong involvement of the central state administration remains a characteristic feature of CDPF in the PRC. Moreover, because the PRC is a one-party system and the state in facto equals the CCP, the CDPF's close connections with the party-state makes CDPF stand out as special case in an international context. CDPF has an access to power that is rare for NGOs. Furthermore, although CDPF aims at representing people with disabilities in China and has elected people with disabilities as leaders, they constitute only a small proportion of the CDPF staff. Hence, in terms of numbers, CDPF does not represent people with disabilities. Moreover, with the strong links to the party-state, CDPF is not in a position to represent viewpoints that do not correspond to the state policy. Thus, while internationally it is not uncommon that disability associations express resistance to, for instance, eugenic methods aiming at the prevention of impairments, the CDPF is not a likely agent for promoting critical voices towards such fundamental state policies in China.

CDPF has been a powerful agent in defining disability in the PRC and has practised allocation of preferential treatments on the basis of a strict definition of what it means to be disabled. In contrast, the new welfare programmes address the general population, people with and without disabilities alike. We therefore suggest that the new welfare programmes may turn out to be the start of a new orientation in what it means to be a person with disabilities in China. These new health reforms may constitute less static frames for the understanding of disability. Presently, the new medical schemes only cover acute catastrophic diseases, but in the future this system might be expanded to include a broader repertoire of care such as rehabilitation services currently promoted by the CDPF. This would (p.47) mean that services for people with disabilities will be mixed with other types of services. In this sense, the new programmes arguably carry the potential to blur the strict distinctions between what it means to be a canji ren or not in the PRC today. Although canji will continue to be based on a medical understanding, the boundaries of the present canji category may open up to new ways of being a canji ren. The implications this may lead to with respect to the vicious circle of poverty and disabilities remain to be explored.

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Notes:

(1) As the PRC is a one-party system, the state is in facto equivalent to the Chinese Communist Party (CCP).

(2) For an overview of the development of special education in China, see Yang and Wang (1994); Epstein (1998); Callaway (2000); and Deng et al (2001).

(3) The Chinese poverty line is defined as less than 2.5 yuan per day, that is, about one third of the international poverty line of one dollar a day (Liu and Rao, 2006).

(4) The report explains the increase in disability rate due to four main factors: (1) growth of the Chinese population; (2) ageing of the Chinese population; (3) revisions of the disability criteria; and (4) socio-environmental factors. The population aged 60 years and over reached 11% in 2005, up from 8.5% in 1987 (CDPF, 2008).

(5) Obviously, the low official disability rate must be kept in mind when reading official Chinese statistics concerning the interrelatedness of disability and poverty.

(6) Adopted at the 17th Meeting of the Standing Committee of the Seventh National People's Congress on 28 December 1990, and revised at the 2nd Meeting of the Standing Committee of the Eleventh National People's Congress on 24 April 2008.

(7) In general, Chinese conceptualisations of body-mind variations are primarily perceived as undesirable and frowned upon. In her analysis of the language of impairments that is in use in Chinese society, Stone (1999) shows that both impairments and illness, which she explains are not understood as distinct categories in Chinese texts, are seen as products of imbalances that indicate separation from the regular order. Impairments are negative signs that signify disturbed relations in the interconnected domains of the body-mind, family, society, nature and cosmos. They are construed as in opposition to what is zheng (proper, regular, orthodox) and quan (complete, entire, whole).

(8) For detailed descriptions of preferential treatment in the PRC, see Kohrman (2005).

(9) This 2006–07 survey was the second national survey on disability issues to be carried out in the PRC. The major revisions from the classifications used in the first national survey conducted in 1987, were the differentiation of hearing and speech impairments (p.48) and the classification of these into two separated categories. Moreover, the category jing shen bing canji (‘mentally ill disability’, used in 1987) was changed to jing shen canji (‘mental disability’, in 2006–07), and the category zonghe canji (‘multiple or complex canji’, in 1987) to duochong canji (‘of many kinds/multiple disability’, 2006–07). Although claimed by the CDPF to be based on a social model of disability, we cannot see how these changes indicate a turn from a medical model.

(10) Filial piety was closely linked to the rules and practices of ancestor worship, and children's duties to respectfully care for their parents also lasted after their parents' deaths (Kohrman, 2005, p 150).

(11) There was a remarkable change in the size of the families following the open-door policy in 1978, when individuals gained the right to seek employment outside their natal village. Many young men, in particular, left and we saw the beginning of the enormous floating population of migrant workers spread out in the urban, eastern areas of the PRC.

(12) Moreover, this was the period before the implementation of the one-child policy in 1979, thus parents were not totally dependent on the abilities of each particular child.

(13) Law of the PRC on the Protection of Persons with Disabilities, Article 11: ‘The State shall undertake, in a planned way, disability prevention, strengthen leadership and publicity in this regard, popularise knowledge of maternal and infant health care as well as disability prevention, establish and improve mechanisms for the prevention, early detection and early treatment of birth defects, and mobilize social forces to take measures in dealing with disability-causing factors such as heredity, diseases, medication, accidents, calamity and environmental pollution, to prevent and alleviate disabilities.’

(14) First, by joint decision by the Central Committee of the CCP and the State Council Decision on Strengthening Population and the Family Planning Work (2000), and in the following year the by the Law on Population and Birth Planning (2001).

(15) In November 2008 Zhang Haidi was elected the new chair of the CDPF. Zhang, presented on CDPF's homepage as a wheelchair-bound female writer, replaced Deng Pufang (CDPF, 2009).

(16) Recently, following the demonstrations related to the Olympic torch before the Beijing Olympic Games, the wheelchair-bound torch carrier who was attacked by demonstrators became a national hero celebrated throughout Chinese media.

(17) CDPF has played a crucial role in ensuring that a legal framework protecting the rights of people with disabilities is now basically in place in the PRC. The Law of the PRC on the Protection of Disabled Persons was established in 1990 and has recently been revised (2008). In 2007, Chinese authorities signed the UN Convention on the Rights of Persons with Disabilities. The Regulations on Employment of People with Disabilities (p.49) (also 2007) aims to further strengthen the legal frame for people with disabilities in the PRC (Shen, 2007).

(18) The negative development of poverty and lack of health services in the 1990s was a rapid process. From 1994 to 1998 the percentage of those categorised under the (Chinese) poverty line increased from 2.5% to 22%, and medical expenditure raised the number of households below the poverty line by 44.3% (You and Kobayashi, 2008).

(19) There had been several minor attempts to re-introduce the Medical Cooperative System from the collective period earlier. However, these all failed, mostly due to lack of political will, insufficient funding and poor management (Liu and Rao, 2006).

(20) 100 yuan is equivalent to €10.45 (18 November 2010).

(21) There are five models for distributing reimbursement funds that the counties can use: (1) in-patient reimbursements and household savings accounts; (2) certain proportions of in-patient reimbursements and out-patient reimbursements; (3) in-patient reimbursements and household savings and reimbursement of catastrophic conditions covered by out-patient departments; (4) in-patient reimbursements and reimbursement of catastrophic conditions covered by out-patient departments; and (5) only in-patient reimbursements; 62.5% of the pilot counties preferred model 1 (You and Kobayashi, 2008).

(22) ‘Rational’ and ‘reasonable on medical grounds’ is not defined in the report, and it remains unclear whether, for instance, traditional medicine is understood as ‘irrational’. Despite the unclear definitions, these numbers are extremely low and indicate the seriousness of over-treatment (see also Zhang et al, 2003; Hofer, 2009).

(23) The excess use of drugs is also creating new health problems, such as children's deafness due to over-use of antibiotics (Callaway, 2000; Hofer, 2009).

(24) However, even with the new health insurance, the cost of hospital treatment remains high, as the reimbursement rates vary from only 15% to 60% of the total cost. Brown et al provides examples of hospital costs of around 20,000 yuan for catastrophic illnesses (referred to in You and Kobayashi, 2008).