‘Nothing about us without us’: the emerging disability movement and advocacy in China

Abstract

The disability movement and disabled persons’ self-help organizations (DPOs) are emerging in China, some of which succeeded in promoting policy and social changes with special strategies. Based on an original survey and interview, this article explains the development and survival strategies of China’s DPOs, and especially interprets some successful cases of social advocacy and policy advocacy in the emerging disability movement. It is hoped that scholars will pay more attention to the advocacy and public engagement of the disability community in non-western settings in the future.

Keywords:

• Disability movement
• advocacy
• disabled persons’ self-help organization
• China
• disability policy

Introduction

The rights of disabled people and their own disability movement are always important research topics in the field of disability and society (Porter 2016; Shakespeare 1996; Swain and French 2000). However, we find that the literature has paid little attention to the advocacy and public engagement of the disability community in authoritarian countries like China. Some literature has researched how government or non-profit organizations help disabled people decrease social exclusion and discrimination (Stone 1996; Wu and Guo 2015). However, we rarely hear disabled people expressing themselves or getting engaged in rights advocacy in these studies.

However, some disabled persons’ self-help organizations (DPOs) are emerging as the government’s governance transforms and society develops. What is more, many DPOs without adequate resources and government support have taken policy and social advocacy successfully. Under this circumstance, active and self-motivated disabled people and their parents deserve more attention and research. This article specifically sheds light on how DPOs can even exist in China and how they can make policy and social changes. Above all, the strategies and the actions are different from those in western countries. We can better understand the disability movement and advocacy if we can have various experiences around the world.

The background of disability organization development

China’s government started to strengthen disability development and equal participation in society after the China Disabled Person’s Federation (CDPF) was set up by the central government in 1988. In 1990, the Standing Committee of the National People’s Congress examined and promulgated the ‘Law of the People’s Republic of China on the Protection of Disabled Persons’, which is the first basic law for the protection of the rights and development of persons with disabilities. The State Council of the People’s Republic of China (PRC) then published various disability regulations on education (1994, revised in 2017), employment (2007) and prevention and rehabilitation (2017). These laws and policies are the fundamental government basis for disabled persons, especially for individual interests. However, the grassroots DPOs cannot get policy or funding support from China’s government, which prefers to fund other Non-Governmental Organization (NGOs).

Until 2008, some small DPOs began to emerge as the United Nations Convention on the Rights of Persons with Disabilities (CRPD) was ratified. On the one hand, some international non-profit organizations such as the UNDP and Handicap International promoted the CRPD and gave funding for the disabled persons in China, which promoted the earliest and most influential self-advocacy in the disability community. On the other hand, China’s government relaxed the control on service-oriented DPOs. Although it was still difficult to register legally at the government department of civil affairs, many unregistered organizations are now able to carry out ‘hidden advocacy’, such as training on the CRPD, law and policy. On this condition, some grassroots DPOs now have the chance to develop and build the disability community.

Two types of disabled people’s organizations in China

There are now two types of disabled people’s organizations in China. One type was set up and sponsored by China’s government. Take the CDPF as an example; it has been the only and the largest national umbrella organization for persons with diverse disabilities since March 1988. In other words, the researchers call it a government-organized non-governmental organization (Saich 2000; Zhang and Guo 2012). The CDPF’s mission is to promote the equal and full participation of persons with disabilities in society and to ensure that persons with disabilities can share the social wealth with other people. The main initiatives of the CDPF are rehabilitation, education, employment, social security, poverty alleviation and culture service for the disabled people in China. It should be noted that the CDPF’s leader appointment, funding sources and decision-making are ultimately decided by the government.

The other type of disabled people’s organization is self-founded and self-managed by people with disability, which includes the true civic groups and civil society organizations (Priestley, Waddington, and Bessozi 2010; Luo and Zhang 2015; Chang 2017). In practice, policy-makers and scholars call these grassroots DPOs. Different from the CDPF, the first true DPO was established by people with disabilities in March 2006 – almost 20 years later than the establishment of the CDPF. The name of this first DPO is One Plus One Group for Disability (OPO), and it has become the most famous, mature and influential DPO in China. OPO is committed to establishing and developing local organizations for disabled people, and to protecting the rights of people with disabilities throughout China. OPO’s vision is to advocate and promote pluralistic society suited to the development of people with disabilities in China, which make it more engaged in the field of public education, policy advocacy, raising disabled persons’ awareness of rights and protection of disabled persons’ rights. In contrast to the CDPF, true DPOs like OPO lack support from policy, finance resources and professionals. Under this disadvantaged circumstance, the survival and development of many local DPOs in China are very difficult, especially for the advocacy-oriented DPOs (Guo and Zhang 2013). At the beginning of OPO’s development, the organization also received funding from international foundations and obtained the government’s legitimacy recognition by providing information services for disabled people, using the service-oriented organization tactic instead of the substantial advocacy orientation. After ratification of the CRPD in 2008, the rights advocacy carried out by OPO has increased more and more:

We participated in the CRPD training by international organizations after nation’s ratification of the CRPD in 2008, which made us know the meaning and importance of ‘Nothing About Us Without Us’, disability rights perspective, our voice, and DPOs. CRPD just a fundamental concept support system. Meanwhile, we gradually found OPO was a true DPO through our action, and then we take more conscious advocacy and disability movement. We were providing disability information services until now, but information services had become a tactic rather than our mission. Our mission was not to provide information services for disability community, but to achieve rights advocacy, public education, and disability movement through the information service platform or carrier.

(Interview with the creator and leader of OPO, 22 February 2017).

International organizations and OPO have continued to carry out CRPD training and support organization-building nationwide since 2008. There were about 150 local DPOs, but as many DPOs are not legally registered – I only estimated the quantity based on the survey and interview. The true number may now be more than 150 in China.

In 2015, I conducted an original survey of 110 DPOs nationwide. I found that only 58% of DPOs are legally registered at the government department of civil affairs. Meanwhile, 52% of DPOs were advocacy-oriented organizations, of which only 45% were legally registered. The number of legally registered advocacy-oriented DPOs is lower than that of DPOs. This result also reflects the current development status of DPOs in China. Although the registration of DPOs is easier at the policy level, the actual policy implementation process is still relatively difficult for advocacy-oriented DPOs. Many unregistered advocacy-oriented DPOs are carrying out ‘hidden advocacy’ without government funding and support:

My organization often took disability rights training and policy learning for parents of children with intellectual disability without government’s funding and support. Our organization also organized parents to engage in policy advocacy. However, the policy advocacy was in the name of disabled children’s parents, instead of DPO because we were illegal in government’s views.

(Interview with one unregistered DPO’s leader, 15 July 2015).

DPOs make policy and social change in China

With a more favorable and friendly political environment for vulnerable groups and the spread of CRPD in the disability community, some DPOs with legitimate registration and social influence began to appear in the field of social advocacy and policy advocacy in China, which succeeded in promoting the policy and social change with special strategies.

Social advocacy and community-building

OPO is the first DPO in China. Since 2008, the organization has supported and cultivated a lot of local DPOs with a disability rights perspective. OPO echoes China’s alignment with the international community in terms of disability affairs and propels gradual change in the environment for disabled people in China. In 2012, OPO submitted a shadow report on behalf of grassroots DPOs to evaluate the implementation of the CRPD in China for the United Nations. Beginning in 2014, OPO published an Annual Disability Development Observation Report with a disability rights perspective on their new media and other traditional media, such as newspaper and television. The report reviews the disability policy implementation and disability rights events for the disability community every year.

Meanwhile, OPO actively adopted information communications technology to take social advocacy and media advocacy. Disability Voice Month (the whole of November every year) is a national online and offline advocacy activity initiated by OPO from 2014. Disability Voice Month is China’s earliest and largest national disability movement with the participation of grassroots DPOs, which has now been serving for more than three years.

OPO created the national disability movement Disability Voice Month, mobilizing all organizations to take disability rights advocacy. In 2014 there were only 57 DPOs that actively engaged in the Disability Voice Month movement, but this number increased to 147 in 2015. By 2016, it helped more than 150 organizations to obtain external resources and carry out advocacy activities by themselves.

Policy advocacy and political participation

Compared with social advocacy, policy advocacy by grassroots DPOs is more difficult because it faces the government directly. The legally registered advocacy-oriented DPOs and some unregistered ones take policy advocacy using Chinese wisdom. Because persons with intellectual disability rarely have the knowledge and chance to engage in DPOs and self-advocacy, their self-advocacy is just emerging in 2017 under parents’ promotion and help. Under this circumstance, the main policy advocacy was taken by parents of children with intellectual disability.

The project of ‘Rong Ai Xing’ inclusive education, which provided personal assistants to support the schools to implement individual education plans and the inclusion of children with special needs, is the first groundbreaking policy change made by grassroots DPOs in China. The DPO is Guangzhou Yangai Association for Parents of Children with Special Needs.

The process of policy advocacy involved some specific and special strategies adopted by parents of children with special needs, social workers and familiar education experts at various stages. First, elite parents of children with special needs studied and adopted the concepts of the CRDP by OPO and International Non-Government Organization (INGOs), which made them aware of the importance of law and policy for improving the rights and dignity of persons with disabilities in their whole lifetime. Second, professional social workers provided laws and policies concerned with disability education issues to the parents, which was effective for improving the advocacy strategies and forming citizen groups. Third, the leaders of DPOs ‘allied’ with some local education experts adopted rational advocacy strategies for lawful rights instead of popular protests, which include data collection from the families of the children with disabilities to improve ‘integrating most of the citizens’ social needs’, a policy proposal based on ‘doing voluntary services by ourselves rather than only requesting government’ that gives the social ‘policy sample’ to the government. Meanwhile, parents of children with special needs made regular informal communication with some officials and gave feedback, seeking common interests with the government and using the discourse of implementing central government policy rather than making a new policy. Through a hidden ‘indoctrinate’ process, the parents deployed a repertoire of self-organized action rather than a DPO or other formal organization.

With continued policy advocacy for five years, in 2012 the Guangzhou Bureau of Education finally released an inclusive education support policy that will provide funding and experts to support the children with disability to study at ordinary school. Furthermore, the government released the policy document Opinions of People’s Government of Guangzhou on Strengthening Special Education 2012–2016, adopting parents’ suggestions and building a friendly interactive feedback system. Meanwhile, the successful example of Guangzhou also set an example for other DPOs in China. Some local DPOs in Zhengzhou and Zhaoqing have made local policy changes with similar advocacy strategies.

Conclusion and discussion

With the improvement of the policy environment of DPOs and the increasing public awareness of social inclusion, the disability movement is now further promoting policy and social change in China. The alliance of advocacy-oriented DPOs is emerging, such as the foundation of Inclusion China in 2014 – a national association of parents of individuals with developmental and intellectual disabilities. These alliances are actively conducting nationwide surveys and mobilization to become a national disability advocacy movement, especially for state policy and social change. The rapid development of the disability movement in China is worthy of scholars’ further study in the future and sheds lights on the current debate over whether DPOs can make social and policy changes in non-western settings. I very much hope that my research will help increase scholars’ attention.

Disclosure statement

No potential conflict of interest was reported by the author.