Intellectual and developmental disabilities (IDD) are defined as “health conditions that affect the developing nervous system and cause impairments in motor, cognitive, language, behaviour and/or sensory functioning.”Footnote 1They include a broad variety of congenital and acquired conditions, including autism, intellectual disability, Down’s syndrome and cerebral palsy. Despite China’s expanding social welfare system, family support has remained the primary, if not the only, source of support for people with IDD (PWIDD) and their families.Footnote 2As part of the emerging organizational field of Chinese NGOs, since the 1990s, parents of PWIDD have been founding non-governmental organizations (NGOs) in their local areas in response to the huge gaps in disability services.Footnote 3
While earlier NGOs initiated by parents of PWIDD focused primarily on rehabilitation service provision for PWIDD, a new form of organization – the parent organization (jiazhang zuzhi 家长组织) – has emerged and expanded trans-locally in China over the past decade. These parent organizations are mutual aid NGOs, initiated and led by parents of PWIDD, and promote advocacy and family empowerment. The expansion of parent organizations aligns with the organizational incubation initiatives of two major national umbrella networks: the Ability Network (AN) and the We Network (WN).Footnote 4The number of AN member organizations increased from 17 in 2014 (the year of its foundation) to 346 in 2024. Similarly, the number of WN member organizations grew from six in 2015 to 137 in 2024. Along with their organizational expansion, parent organizations are among the most dynamic NGOs in China, actively engaging in social and policy advocacy, and facilitating a series of policy and service changes in areas such as education, employment, health and social care at national and local levels.
What accounts for the rapid trans-local emergence and diffusion of parent organizations? This study examines peer organizational networking and institutional entrepreneurship within the emerging field of Chinese NGOs. It focuses on the institutional efforts of parent organizations and their national networks to create new empowerment- and advocacy-focused parent organizations in a field previously dominated by rehabilitation service organizations.
Network Entrepreneurship as Embedded Agency: An Institutional Approach
This study draws on the concept of institutional entrepreneurship, as proposed by Paul DiMaggio. This approach refers to “the activities of actors who have an interest in particular institutional arrangements and who leverage resources to create new institutions or to transform existing ones.”Footnote 5The institutional entrepreneurship literature unravels the agency of institutional-bounded actors in transforming existing institutions and creating new ones, which is also known as the puzzle of “embedded agency.”Footnote 6Through institutional work, or “the purposive action of individuals and organizations aimed at creating, maintaining, and disrupting institutions,”Footnote 7institutional entrepreneurs can strategically manoeuvre institutional transformation.Footnote 8In the current study, we conceptualize peer organization networking as a form of institutional work aimed at incubating parent organizations trans-locally. We identify actors within national networks and local parent organizations who engage in the purposive networking actions as network entrepreneurs. Using parent organization networks as a case study, we unpack the institutional work performed by these network entrepreneurs, focusing particularly on the emerging subject position of “parent of PWIDD” in incubating and diffusing a novel organizational form trans-locally.
Drawing upon the NGO network literature, this study offers a process-oriented explanation about why and how the peer organization networks function to incubate parent organizations trans-locally. NGO networks broadly refer to “groups of three or more civil society organizations that pursue shared purpose.”Footnote 9These networks are characterized by the reciprocal communication and exchange relations between organizational actors.Footnote 10As suggested by Julie Battilana and colleagues, institutional entrepreneurs must navigate enabling conditions, particularly field characteristics and actors’ social positions, to obtain resources and legitimacy for institutional innovation and transformation.Footnote 11Existing studies have provided potential explanations for how NGO networks can create enabling conditions. For example, Aimei Yang and Pauline Cheong find that networking initiatives by NGO incubators, acting as relationship brokers, have enabled Chinese NGOs to build cross-sectoral alliances with organizations from other sectors. Such initiatives allow the NGOs to leverage structural holes to facilitate information flows, acquire resources and ultimately bring about structural changes at the community level over time.Footnote 12Work by Maria Bondes on networked environmental contentions in China insightfully unfolds the horizontal and vertical networking processes in the mobilization and scaling-up of environmental struggles. She and colleagues reveal that the horizontal connections between local contentious communities, as well as vertical linkages between local communities and supra-local actors, form the basis of relational and non-relational exchanges of non-material (i.e. information flow) and tangible (i.e. financial, material, training) resources through the brokering roles of intermediaries such as environmental NGOs, lawyers, professors, experts and journalists. Together, these elements develop a cognitive framing, collective identity and the resources to enable the diffusion of environmental contention trans-locally.Footnote 13The transnational advocacy network (TAN) literature developed by Margaret Keck and Kathryn Sikkink famously argues that TANs activate “boomerang effects” to socialize nation states into implementing international human rights norms. This is achieved by providing local civil society actors with access to the international system and resources to advance their domestic struggles.Footnote 14Yet more recent work, such as Stephen Noakes’ study on the TAN in China, indicates the constitutive roles of the state in mediating the impacts of transnational advocacy.Footnote 15In sum, existing studies propose that NGO networks strategize to enact organizational and social changes through facilitating multilevel relational and non-relational exchanges, bridging information flows and engendering collective meaning and identity.
Focusing primarily on cross-sectoral networks, existing studies have insufficiently examined the role of institutional actors’ subject positions in the enactment of institutional work within NGO networks. In contrast to cross-sectoral networks, peer organization networks share a similar organizational identity, institutional constraints and opportunities, as well as common norms and practices. An emerging strand of work on institutional entrepreneurship, particularly research by Steve Maguire and colleagues on HIV/AIDS advocacy in Canada, argues that the subject position of institutional entrepreneurs, which is defined as the “normative and structural qualities of organizational field actors’ socially constructed and legitimated identities,” can provide enabling conditions for enacting institutional work by influencing actors’ access to power, resources, interests and opportunities in the organizational field.Footnote 16Within the peer networking processes of parent organizations, the identity of “parent of PWIDD,” which in China connotes socio-political legitimacy and significance, may turn into a subject position that is beneficial to the institutional work of network entrepreneurs. An emerging body of literature has investigated the political objectivity of parents in contemporary China. For example, Manon Laurent’s recent study insightfully suggests that middle-class parents in China have increasingly become political subjects whose gendered social identities have converged with the regime’s nationalist discourses, which in turn provide these parents with the privileges, resources and legitimacy needed to navigate the regime’s spaces and counter the social and environmental challenges faced by their children.Footnote 17Recent studies on “rainbow parents” and the parents of LGBT children similarly shed light on the moral discourses surrounding parenthood and family in China. These discourses equip parents with the cultural capital needed to negotiate with state authorities and engage in advocacy work.Footnote 18
Given the existing NGO networking literature’s lack of engagement with the subject position of actors, the peer organization networking processes warrant further scrutiny. In addition, the network approach within the social capital tradition offers a heuristic perspective for understanding how parent organizations undertake institutional work, as it highlights that the closure of network structures is pivotal to the formation and maintenance of collective norms and trust, thereby laying the foundation for social capital accumulation.Footnote 19As revealed in the existing literature on cross-sectoral networks, the effectiveness of interorganizational collaboration relies on building trustFootnote 20and the alignment of missions.Footnote 21Yet from a social capital perspective, peer organizational networks tend to evoke bonding social capital, which is characterized by trust, cooperation and strong relational ties among members with similar sociodemographic characteristics. In contrast, cross-sectoral networks tend to cultivate bridging and linking social capital, which is characterized by more open yet looser and weaker ties among heterogeneous members.Footnote 22The “inward-looking” nature of bonding social capital reinforces exclusive identities, promotes homogeneity and facilitates collaborative action within the close network.Footnote 23Together, these theoretical concepts guide our unravelling of alternative explanations for NGO networks’ strategies in enacting institutional changes.
Methods
This study draws primarily on in-person and digital ethnographic fieldwork conducted between 2019 and 2023.Footnote 24Data were gathered from multiple sources, including participant observations, in-depth and focus group interviews, and documentary analysis. We traced the institutional work of two national networks (AN and WN), along with their member organizations, to generate an extended case study that contributes a meaningful theoretical extension to the broader understanding of institutional changes in the emerging organizational field of Chinese NGOs.Footnote 25The two national networks were selected as critical cases for this study because they are the largest – and the only – parent organization networks with clear social missions and organizational practices centred on family empowerment and advocacy.Footnote 26In this study, AN and WN are treated as homogeneous cases in terms of the institutional work they promote, despite some variations in their structures and internal governance.
Our ethnographic fieldwork began in 2019. The first author served as an intern with a parent organization in a southern city and within a national network to observe the everyday organizational life of both organizations and how they interacted with each other. During the COVID-19 pandemic (2020–2022), the first author continued digital participant observations. Beginning in January 2023, all three authors conducted participant observations within a national network and participated in conferences, meetings and workshops organized by the network, where we observed the networking activities of parent organizations from across the country both during and after the meetings. Informal, open-ended interviews were conducted with organizational leaders, staff, volunteers and parent members during the participant observations to learn about the everyday networking practices of these organizations. By following the evolution of the parent organizations and their networks over four years of immersive fieldwork, we were able to track the development of the national networks as well as the institutional work of local parent organizers and their organizations.
From 2019 to 2023, we conducted a total of 34 in-depth interviews with leaders, staff members, board members, volunteers, parent members and funders of the national networks and local parent organizations. We also conducted four focus group interviews with 25 parent organizers to gain an understanding of their networking activities in their local areas. These interviews were conducted with three groups of local parent organizers from South (N = 6), Central (N = 7) and North (N = 6) China, respectively, as well as with a group of local parent organizers from “hub organizations” (shuniu zuzhi 枢纽组织) (N = 6), which are mature local parent organizations that actively support other parent organizations in their regions. Together, these in-depth and focus group interviews involved 28 parent organizations across 21 cities, 13 provinces and one municipality (Chongqing) in mainland China, and two parent organizations in Hong Kong and Taiwan.
From Service to Advocacy: Forming Networks of Parent Organizations
The emerging organizational field of IDD NGOs has its roots in service organizations initiated by the parents of PWIDD. Since the 1990s, parents of PWIDD have been setting up formal and informal organizations to provide rehabilitation and care services for PWIDD with the aim of solving the care dilemma faced by families and communities. Nearly all of the founders of service organizations we interviewed stated that their motivation for establishing a service organization was to ensure that their children had “somewhere to go,” as they had little to no access to affordable public services in their local areas.Footnote 27
China’s first IDD service organization, Stars and Rain (Xingxing yu 星星雨), which provides rehabilitation services to children with autism, was established in Beijing in 1993 by Tian Huiping 田惠萍, a former university professor and the mother of a son with autism. Similarly, many parents founded service organizations in their local area to provide rehabilitation and care services for their own children. For example, a mother in Guangxi province set up a rehabilitation centre in 2003. She was working as a pharmacist in a local hospital when her son was diagnosed with autism in Nanjing and then underwent rehabilitation training in Beijing. After returning to Guangxi, she found that there was a lack of rehabilitation, education and other social services for her son in the local area. Like many other children with IDD (CWIDD) at that time, her son was denied admission to public school, which made daily care an overwhelming challenge for the family. To resolve this problem, she started a small non-profit rehabilitation centre in her own home, providing rehabilitation and day care services for six children with autism, including her son. This set-up evolved into a larger rehabilitation service organization.Footnote 28
Although most NGOs set up by parents of PWIDD focus on providing rehabilitation services, several identify themselves as “parent organizations” with an organizational mission of parent empowerment, rather than direct service provision. The concept of parent organizations was introduced to China by a British couple, both professional psychiatrists, who had a disabled child. In 1997, they founded the first NGO in China to support parents of PWIDD, which later evolved into one of the founding organizations of AN.Footnote 29While earlier parent organizations distinguished themselves from other IDD NGOs by emphasizing parent empowerment over direct services for PWIDD, international disability rights discourses and practices have played an important role in shaping the organizational identity of parent organizations. As articulated by the founder of an early parent organization in China, which later became the founding organization of WN, the understanding of parent organizations as a new organizational form was inspired by other parent organizations in the Greater China region:
The history of our association can be traced back to our exchanges with parent organizations in the Greater China area (huaren diqu 华人地区), such as Hong Kong, Taiwan and Macau. We were influenced by them. It was the first time we knew that parents in Hong Kong, Taiwan and Macau had achieved a lot in terms of promoting parent organizations. I realized that instead of founding rehabilitation centres, the more important mission for parents should be to promote social change and disability policies to solve our children’s problems.Footnote 30
Parent organizations in Hong Kong and Taiwan emerged in the 1980s and 1990s, respectively, and have played a significant role in promoting the development of policy and service systems for PWIDD in their respective societies.Footnote 31In 2001, an informal alliance among five parent organizations from mainland China, Hong Kong, Macau and Taiwan was formed to promote exchanges between parent organizers in the Greater China area.Footnote 32As the founder of WN explained, interactions with parent organizers outside of mainland China enabled parents on the mainland to envision parent organizations as a novel organizational form dedicated to promoting societal and policy changes concerning the rights of PWIDD and their families.Footnote 33
A critical juncture in the emergence of this new organizational field was the formation of two national networks – AN and WN – in 2014 and 2015, respectively. In its mission statement, AN asserts that the network endeavours to “promote the effective implementation of CRPD in China, promote PWIDD and their families’ full and equal inclusion in society and their dignity.” Meanwhile, the WN mission statement commits to facilitating “the development of social support systems through the mutual empowerment of parent organizations nationally.” The establishment of these two networks and their missions reflects how visionary parent organizers position parent organizations as a novel organizational form, distinct from existing rehabilitation service NGOs. This new organizational identity involves engaging in advocacy, leading to family empowerment that ultimately contributes to the socialization of familial responsibilities regarding care and support for PWIDD. The president of AN, the mother of a son with autism, illustrated this transformation:
Ten or twenty years ago, parents created their own organizations to provide rehabilitation services for their children, as there wasn’t any form of service. But now there are more resources devoted to providing services, including the government, professionals and businesses. I think this is the right time for parents to return to our original position as service users instead of service providers.Footnote 34
As her statement reveals, the formation of parent organizations and their networks is deeply intertwined with the emergence of a subject position identified as “parents of PWIDD” (xinzhi zhangai zhe jiazhang 心智障碍者家长), as these parents are propelled by their motivation to resolve their family’s care dilemma. This subject position also empowers these visionary parent organizers by conferring social and moral legitimacy to their parenthood, enabling them to initiate institutional work.
At the time when AN and WN were founded, most of the NGOs established by parents of PWIDD focused on rehabilitation services. Only a few parent organizations were dedicated to community empowerment and policy advocacy. As one of the founders of AN explained:
When we first launched the network, we thought that it would be very easy to find parent organizations to join the network because most IDD service organizations were founded by parents. Yet we searched across the country and only found 17 member organizations, including registered formal organizations and unregistered parent groups. There were very few parent organizations.Footnote 35
Faced with such an organizational landscape, the leaders of AN and WN conceived their networks as platforms for incubating new parent organizations and transforming existing service organizations into ones focused on advocacy and empowerment. After less than a decade of development, the number of their member organizations has increased significantly, indicating that this emerging organizational form of parent organizations has diffused and expanded widely throughout the country. What are the organizational processes underlying such an institutional change? The next section addresses the institutional work undertaken by network entrepreneurs and its implications.
Performing Network Entrepreneurship: The Diffusion and Localization of Parent Organizations
Our ethnographic fieldwork reveals that, as entrepreneurial parent leaders established national networks to incubate parent organizations, this novel organizational form diffused trans-locally through three organizational processes facilitated by networks of peer organizations: vertical linkages, horizontal exchanges and localization.
Vertical linkages
Although the two networks vary in their degree of interdependence with member organizations, both AN and WN have developed vertical linkages with member organizations over time. Vertical linkages refer to interorganizational connections established by the national networks through formalized institutional channels. The president of AN explained the nature of the vertical linkages between the national networks and local organizations:
[The network] is a platform of collective governance, through which we can achieve a lot of things. For example, we can reach out to our community and conduct collective fundraising and advocacy through the network’s platform. We can also explore examples of good practice originating from in-network organizations that can be replicated by other organizations. As more communities join, parents are not only able to huddle together to stay warm (baotuan qunuan 抱团取暖) but can become a collective force to initiate social changes.Footnote 36
The networks were deliberately engineered as platforms through which multiple forms of formalized bonding between the national networks and their member organizations could be envisioned. Similar to other NGO networks, the national networks of parent organizations function as a supra-local intermediary that facilitates the diffusion of material resources as well as ideas and repertoires of strategies to the local communities.Footnote 37Our fieldwork and interviews reveal that four networking activities – funding small-grant projects, coordinating collective fundraising, carrying out joint advocacy campaigns and implementing joint programmes – are salient to the transmission of resources and new organizational ideas and practices from the national networks to emerging local groups.
Two of the most influential activities in the formal linkages between national networks and member organizations are funding small-grant projects for, and conducting collective fundraising activities with, member organizations. For example, in 2015 WN launched a project, with the support of a domestic foundation, which offers small grants (30,000–50,000 yuan) to formal and informal parent organizations in the local area.Footnote 38In addition, with the emergence of internet fundraising initiatives such as Tencent Charity Day,Footnote 39AN and WN began to initiate collective fundraising projects with their member organizations through online platforms. These activities provide financial resources for parent organizations and service organizations to conduct family mutual aid activities, social and policy advocacy campaigns, and organizational development initiatives in their local areas. With its professional fundraising team, AN is particularly adept in terms of supporting its member organizations in internet fundraising by providing ready-made fundraising programmes and templates, which are designed to “solve the fundamental problems of organizational survival by providing a source of financial income to organizations.”Footnote 40
For many informal parent mutual aid groups in local areas, the direct and indirect financial support offered by peer networks is the first instance of formal funding they receive. A parent organizer in Beijing, for example, recalled that such financial support was fundamental to her organization:
We were one of the first organizations to receive financial support from the networks. Back in 2015, it was the most difficult time for us as we had no funding at all … From there, we managed to survive and have gradually started to raise funding on the internet with the support of the networks since 2017.Footnote 41
The availability of financial support from peer networks enables these organizations to address the issue of resource deprivation, allowing them to leverage the necessary resources for both starting and sustaining their organizations. These new resource opportunities also help many existing service organizations to transform into parent organizations or to expand their existing services to offer family support programmes.
The financial resources leveraged by the national networks facilitate the transmission of new organizational ideas and practices to local groups through other formalized activities, such as carrying out joint advocacy and programmes. The small-grant projects and collective fundraising events conducted by AN and WN are dedicated to promoting what they call “social advocacy activities” (shehui changdao huodong 社会倡导活动), which are aimed at transforming public attitudes towards PWIDD and their families. Member organizations can apply for small grants from the networks to implement family empowerment initiatives and other programmes that align with the networks’ missions. In addition, the two networks engage in institutionalized policy advocacy campaigns in alliance with member organizations at both the national and local levels, focusing on social policies and services relevant to IDD families. During the early years of the COVID-19 pandemic, for example, AN initiated a collective care network with 294 member organizations to provide aid and support to families affected by the lockdown policies.Footnote 42AN’s networking initiatives were followed by a legislative advocacy campaign that successfully changed China’s Civil Code by mandating that local governments take responsibility for providing temporary guardianship for PWIDD when family guardians are absent.
Existing studies point out that the NGO networking processes that enable information flow and interorganizational interactions carry institutional effects and “socialize” organizations within the networks to adopt new ideas, norms and practices mimetically.Footnote 43Similarly, engagement with the vertical connections within national networks has led many local parents to begin experimenting with delivering family mutual aid programmes, social advocacy events and policy advocacy activities that align with the national networks’ social missions of family empowerment and policy advocacy. A parent leader in Guangdong province described the implications of these connections:
At the beginning, local parents knew little about the ideas of parent organizations. But after implementing the small grant project for just a year, they ran their first family mutual aid activity and held the first social advocacy event. When the project ended, they became a new organization and were no longer the same as one year before!Footnote 44
In this process, local organizations learn new discourses and practices related to the promotion of social inclusion and family empowerment from the national networks. Similar to the vertical linkages in other NGO networks, the national networks of parent organizations facilitate the transmission of both tangible resources and information about innovative organizational ideas and practices to local members. As a result, they serve as an institutional force promulgating isomorphism among emerging local parent organizations.
Horizontal exchange
In addition to these vertical connections, horizonal exchange between and among local parent leaders in the networks has facilitated the trans-local diffusion of the new organizational form of parent organizations. Both networks have deliberately orchestrated a variety of network activities that facilitate horizontal interconnections among parent organizers in different regions – for instance, organizing conferences, training and visiting tours – which have cultivated a new organizational identity and structure and diffused organizational ideas and practices previously unavailable locally.
Most noticeably, AN and WN have, since their founding, held annual meetings as their signature events, bringing together member organizations across the country and discussing issues related to organizational development and IDD policies and services. They also hold training workshops for member organizations on topics ranging from organizational governance to disability policy issues. These horizontal exchanges among local communities play an important role in nurturing relational channels of informational flows, which hinge on dynamic forms of interpersonal interactions and communication enabled by the shared subject position of parents, particularly mothers.Footnote 45Conferences and training workshops provide a perfect arena where “new parents” (xin jiazhang 新家长) or parents who have not yet formed or have only just started their organizations can exchange information with and learn from “senior parents” (qianbei jiazhang 前辈家长) or leaders of more established parent organizations. In most conferences and workshops, senior parents who run relatively mature and resourceful parent organizations in economically developed cities are invited to share their organizational experiences or participate in exchange activities. These meetings offer invaluable opportunities for both senior and new parents to engage in formal exchanges, such as speeches and sharing as part of the meeting’s formal agenda, as well as dynamic and spontaneous informal exchanges beyond the formal agenda. In our participant observations, senior and new parents often chatted informally and participated in affective exchanges of their personal and organizational experiences during tea breaks and in their hotel rooms. The shared social vulnerabilities that stem from the subject position of “parents of PWIDD” make the affectional relational exchanges between senior and new parents possible and are crucial to the trans-local transmission of parent organizations as a new organizational form.
While NGO networks serve as powerful channels for promoting a cognitive framing of grievances, the shared subject position of network entrepreneurs also fosters strong bonding social capital within their dynamic relational ties, cultivating trust, collaboration and, ultimately, a collective identity.Footnote 46For new parents, both hearing from and communicating with senior parents are critical to their political awakening and the development of a collective identity as parents of PWIDD. The formation of this collective identity as “parents of PWIDD” is a three-fold process that involves reframing individual problems, seeking social solutions and recognizing parents of PWIDD as a community. Through sharing in the lived experiences of senior parents, new parents begin to reframe their grievances and care dilemmas as parents of PWIDD from viewing them as a familial tragedy to understanding them as a social problem caused by the inadequacy of the social support system and discriminatory social attitudes. New parents also gradually transform their attitudes towards their children’s disability, moving away from seeing it as an abnormality that needs to be cured to recognizing it as a form of human diversity. As a result, the solution to their familial challenges no longer involves “leaving their hometown” (beijing lixiang 背井离乡) to seek rehabilitation elsewhereFootnote 47or setting up an organization to provide rehabilitation services to individuals. Instead, some new parents come to accept the social missions of the networks that focus on promoting policy changes and building a social support system for their children:
The ideas in the training influenced me. I realized that our children’s issues cannot be solved merely by the family. Neither should we position our children as the family burden, nor should we sacrifice everything for the children and believe that it is nobody else’s business. It is wrong! Every family and every individual is a part of society. If one societal member encounters a challenge, it means that there is a social need to build a system that can resolve the challenge.Footnote 48
For many parent organizers, such as the mother organizer quoted above who raised her disabled child in a rural area of Hebei province, the new social diagnosis regarding their personal dilemmas is emancipatory. When discussing why they created a parent organization, almost all parent organizers interviewed for this study recalled a similar moment of reframing their personal challenges related to caring for PWIDD as a social issue. The social diagnosis they had learned from other parents enabled them to shed the shame and burden society ascribes to them as parents of PWIDD. As suggested by the mother above, her care dilemma was no longer framed as a familial issue; instead it should be addressed through social interventions, such as inclusive education placements in public schools. The social diagnosis of the care dilemma is deeply intertwined with the gendered division of labour concerning care and the gendered stigma faced by Chinese mothers of PWIDD, who constitute the majority of parent organizers in this study and beyond.Footnote 49For these mother organizers, establishing a parent organization was as much an empowering personal emancipation as it was a social action. Despite the profound implications of gender and disability in both their care work and networking activities, mother organizers in this study rarely raised gender equality as a claim in their institutional work and instead emphasized their “parent” identity, which is more socio-culturally legitimized.
In this process of reframing their personal grievances, new parents cultivate a novel collective identity as “parents of PWIDD” who belong to a community facing a shared collective dilemma. Forming parent organizations reflects both old and new parents’ positionings of themselves as a community that must “huddle together,” “advocate for policy and social changes and fight for the rights of our children.”Footnote 50Witnessing senior parents successfully promoting policy and service changes inspires new parents to leverage their embodied experiences and the social roles inherent to their subject position to transform their community’s problems, as “nobody would pay attention to our children if we parents do not walk out (zou chulai 走出来) or speak for them.”Footnote 51Through connecting with other parents in a similar subject position, new parents gradually develop a sense of collective identity and solidarity as a community. This sense of community then becomes the cornerstone of the organizational identity of parent organizations, representing a new organizational form.
While most senior parent organizers are middle-class, educated leaders who run their organizations in metropolitan cities, many of the new parents we interviewed and encountered during our fieldwork came from economically disadvantaged cities or counties, or even rural areas. These parents struggled to find any social interventions to address their familial care issues in their local areas. In recent years, national networks have dedicated intensive efforts to reaching out to families in economically disadvantaged rural areas to tackle the intersectional vulnerabilities faced by rural families. WN, for example, has tried to mobilize its hub organizations in south, central, and northern China to visit local rural families.Footnote 52
The conferences and training organized by the networks, which facilitate dynamic and intensive relational interactions among senior and new parents, also serve as perfect arenas for sharing, discussing and devising innovative organizational ideas and practices. Many parent organizers attended these exchange activities with the express intention to learn (xuexi qujing 学习取经) from organizations in other regions.Footnote 53The focus on learning among parent organizers was particularly strong, as they are constantly faced with obstacles and challenges in organizational and programme development. By exchanging ideas and experiences with other senior and new parents, they are able to discuss and find solutions for their own dilemmas. Parent organizers with limited experience of running a professional NGO are able to gain new information through formal and informal exchanges during the conferences and workshops, from how to navigate confusing organizational registration procedures to exploring innovative service and advocacy programmes.Footnote 54
Study tours are another horizontal exchange activity facilitated by the national networks. These tours can either involve senior parent organizers visiting a newly established organization or a group of parent organizers from different regions paying a group visit to parent organizations in more developed regions (for example, Beijing, Guangzhou or Hong Kong) or foreign countries (for example, the United States). Similar to conferences, study tours facilitate trans-local information flow and organizational learning. Parent organizers across the country are particularly committed to learning new organizational practices and programmes from other regions. The founder of a parent organization in Beijing stated:
We went to visit a factory [providing supportive employment services] in Guangdong. Then, we went to Hong Kong and Macau to learn their advanced ideas. From there, I learned from other peers and went to Japan and eventually the United States with them. I think these experiences opened our minds tremendously and we got to know what services are already available out there in the world.Footnote 55
As suggested by this interviewee and many other parent organizers, study tours open them up to new ideas and practices that are not available in their local areas. Interorganizational exchanges provide ready-made templates for organizational and programme innovation. As one parent organizer from Qinghai province put it: “senior parents have paved the ways for us, and we can drive on a highway right away.”Footnote 56
Unlike many other cross-sectoral networks, relational interactions and bonding social capital are rich and dynamic in the horizontal ties among parent organizations from different local communities because of their shared experiences of social vulnerabilities. In these processes of horizontal interactions, homogeneous forms of organizational identity, norms and practices are circulated and replicated by new parent organizations across geographical boundaries. As a result, parent organizations have increasingly emerged as a vital organizational form through the institutional work of network entrepreneurs.
Localization: Engineering Institutional Changes Locally
For local parent organizers, interorganizational learning and diffusion is far from a direct transplantation process; rather, they localize novel organizational ideas and practices by creatively translating, adapting and, at times, truncating them to suit local institutional environments.
Parent organizers are mindful of the institutional constraints and opportunities they need to navigate when setting up and running a parent organization in their local area. The vast socio-economic inequalities across China, along with the fragmented political systems, determine how the organizational ideas and practices of advocacy and family empowerment learned from the national networks and other peer organizations can be implemented locally. For example, advocating for inclusive education policies is one of the most important tasks for parent organizations across the country. The denial of access to public education systems has long hindered the social inclusion of CWIDD and increased the care burden on their families. Despite the commonality of their policy discourses, the strategies employed by parent organizations to localize inclusive education policies vary tremendously across different regions. Parent organizations in Guangzhou, for example, have benefited from the local education department’s relatively generous public spending on social services and have promoted a model of professional support. Following years of advocacy by parent organizations, the Guangzhou government has implemented support programmes to enable children with mild IDD to attend regular primary schools. These programmes include government-subsidized resource classrooms and para teachers to implement individualized education plans for CWIDD.Footnote 57However, many parent organizations in resource-limited areas hesitate to advocate for this professional model of inclusive education. The president of one parent organization in a western province explained: “It is almost impossible for the government to fund para teachers in regular schools because of resource limitations.”Footnote 58Instead, her organization promoted inclusive education in the local area through the provision of school-based inclusive education training programmes to equip school teachers with the knowledge and skills required to support CWIDD without the need for expensive para teachers.Footnote 59Similarly, a parent organizer from a third-tier city in Guangdong province suggested that her organization was pragmatic about promoting the implementation of the national inclusive education policy it had learned about through the national networks. While mirroring the approach of the national networks by submitting a policy proposal to the city’s people’s congress and the people’s political consultative conference, it strategically “selected only three to five policies that [could] be easily implemented,” but abandoned suggestions such as “governmental purchase of services in schools” that it deemed would be difficult, if not impossible, to adopt locally.Footnote 60
The development of local parent organizations is also contingent on the local state’s attitude towards social organizations. For example, a parent organizer in a northern province geographically adjacent to Beijing revealed that it was difficult for her organization to advocate for policy changes because of the local government’s hostility to social organizations owing to stability maintenance concerns. Thus, the organization was more active in promoting public education and family empowerment programmes at the societal and community levels than in policy advocacy.Footnote 61Rather than directly transplanting the ideas and practices learned through vertical and horizontal linkages, local parent organizers make strategic adaptations to suit their own local institutional environment.
Yet, when confronted with local institutional constraints, the localization of parent organizations is not without friction, especially when these organizations struggle with challenges affecting their survival. This dilemma is best exemplified by the fact that many parent organizers continue to run their rehabilitation organizations to provide for-profit or nonprofit services to PWIDD, despite the networks’ strong social missions and their inclination to distinguish between parent organizations and rehabilitation organizations. For parents who ran service organizations to provide rehabilitation services for their children and other PWIDD prior to the establishment of the national networks, the rehabilitation organizations provided more reliable sources of financial resources compared to the newly emerging parent organizations.Footnote 62Despite these frictions, local parent organizers remained optimistic about the social impact of local parent organizations. A parent organizer in Shanxi province described their organizational strategies under limited resources as “indigenous methods of inclusion” (tufa ronghe 土法融合):
Even though we cannot initiate a big programme like organizations in Guangzhou, we do what we can to influence people bit by bit. Our “indigenous methods of inclusion” are to recruit warm-hearted teachers and volunteers and influence them so that they can go back and influence other people within their social networks.Footnote 63
Local parent organizations adopt pragmatic strategies to seek governmental support for their advocacy work. Their pragmatism is best illustrated by their heavy reliance on the personal connections of their parent organizers and members with local political leaders to promote their advocacy initiatives. By positioning themselves as “parents of PWIDD,” they gain the moral and social legitimacy to engage in advocacy of policies that affect their family’s welfare. Many parent organizers strive to take leadership roles in their local Association of Persons with Psychiatric Disability and their Relatives (an affiliate body of the China Disabled Persons’ Federation (CDPF), a semi-governmental agency) to exert political influence over disability policy. Using their personal connections and those of parent members, parent organizers – who are mostly resourceful middle-class parents – actively seek insider support from governmental officials, school principals, business elites and academics in their everyday organizational work, including promoting specific advocacy programmes, seeking organizational registration and locating office space for the organization.
As such, these creative strategies for translating and adapting innovative organizational ideas and practices to align with the local institutional environment enable parent organizations to localize the novel organizational identity, norms and practices they have learned through the interorganizational networks. As a result, parent organizations have emerged as a novel organizational form, leveraging their social and policy influence throughout the country.
Conclusion
This study examines the network entrepreneurship of parent organizations in China. We argue that entrepreneurial parent organizations strategically orchestrate interorganizational networks to initiate institutional changes – the trans-local diffusion of a new organizational form in this case. The institutional work of network entrepreneurs is enabled by their subject position as “parents of PWIDD” through three organizational processes – the vertical connections between the national networks and local member organizations, the horizontal interactions among senior and new parent organizers, and the creative translation and adaptation of local parent organizations – that facilitate the trans-local diffusion of organizational resources, identity, ideas and practices. Our findings make several broader theoretical contributions.
First, this study sheds light on peer organization networks and their potential to engender institutional work in the emerging organizational field of Chinese NGOs. To date, research on Chinese NGOs has largely adopted a state-centric approach to unravelling the coercive isomorphic processes instilled by central and local states and NGOs’ strategic adaption to state-dominated institutional environments. Examples of this line of inquiry include research on the divergent depoliticization strategies adopted in response to state repression,Footnote 64the negotiation of service activism in relation to institutional embeddedness in local states,Footnote 65and advocacy patterns under an array of institutional factors, such as government affiliation and funding.Footnote 66Research in the past decade has also highlighted that NGOs in China are operating under transforming institutional environments, in which their autonomy in setting agendas and designing services has been increasingly diminished.Footnote 67Despite these changes, NGOs in China continue to grasp the limited opportunities for policy advocacy and utilize domestic resources to negotiate legitimacy and social influences.Footnote 68Engaging with the ongoing discussion on the transforming organizational field of Chinese NGOs, our study examines Chinese NGOs’ innovative engagement with non-state institutional actors (i.e. interorganizational networks) and its institutional implications, which have been underexamined in the existing literature.Footnote 69The dynamic, multidirectional and trans-local interactions among peer organizations in networks highlight an undiscovered space where resources, identity, ideas, practices and information can be circulated and co-produced. These findings also shed light on the adaptability and agency of entrepreneurial NGOs in strategically transforming existing institutions and creating new ones in an emerging organizational field characterized by changing institutional rules, actors and practices.Footnote 70
Our specific focus on peer organization networks also fills a gap in the literature, as most existing research examines contention networks or cross-sectoral interorganizational networks. The NGO literature in China and beyond, especially regarding environmental contention, has insightfully revealed the dynamics of trans-local contentions through the horizontal and vertical connections of local and supra-local actors. Our study adds a nuanced understanding of the networks of peer organizations in the same issue areas. Different from the environmental contention literature, which has found that relational and interpersonal interactions in trans-local horizontal linkages often remain limited and happen via the internet,Footnote 71our study highlights that parent organization networks configure vertical and horizontal ties that are dense in relational interactions, emotional and experiential exchanges, and trust and community solidarity because of the homogeneity of their subject identity. The bonding social capital created and shared through these relational interactions among peer organizations also facilitates the diffusion of information, ideas, practices and identities, which carry institutional implications.
Closely related to these findings, the institutional work of parent organizations and their national networks echoes an underexamined theme in the institutional life of Chinese NGOs – namely, the subject positions of institutional actors. Existing research on institutional entrepreneurship in the West highlights the role of subject position in providing interests, opportunities and resources for actors looking to leverage institutional changes.Footnote 72In our study, the peer networks of parent organizations strategically evoke and take advantage of their subject position of “parents of PWIDD.” This subject position is characterized by the social vulnerabilities of family caregivers on the one hand and familial morality in Chinese society on the other, which together grant parent organizers the political space and moral legitimacy to enact organizational and social changes regarding their community’s welfare. The shared experiences of care dilemmas and social vulnerabilities inherent in the subject position of parent organizers enable them to build the bonds, solidarity and collective identity that are essential to forming networks and conducting institutional work. The shared subject position of parents of PWIDD also builds bonding social capital within the networking process, creating affectional interpersonal ties that facilitate information flows and collaborative action. Although their institutional work benefits from traditional social imaginings about parenthood, parent organizations instil novel meanings of parenthood in Chinese society. The organizational ideas, discourses and practices promoting the socialization of familial care, as well as the intensive engagement of mothers in institutional work, have renegotiated what it means to be “good parents” and “good mothers,” a concept which used to hinge on a mother’s sacrifice of her own needs in the child-rearing project.Footnote 73They also reflect women’s increasing political engagement and participation in Chinese society,Footnote 74despite gender equality not being a salient claim in these mother organizers’ identity construction in their institutional work.
From a disability studies perspective, the roles of parents in parent organizations and parent advocacy have been studied in other East Asian and Western contexts. In the Anglo-American world, parents have been viewed as both allies and obstacles in promoting the rights of people with disabilities because their problematic use of medicalized and individualized narratives and practices may jeopardize the autonomy and self-determination of people with disabilities.Footnote 75In East Asian societies, such as Taiwan and South Korea, where disability has been traditionally constructed more as a familial tragedy than as an individual deficit, the civic engagement of parents – particularly mothers – has been accounted for in its empowering potential to enact social change.Footnote 76As shown in this study and other research conducted in newly industrialized East Asian contexts, investigations into parent organizations primarily focus on struggles related to redistributive justice in the absence of a robust social welfare system. Future studies will benefit from an in-depth exploration of these interwoven dynamics of disability politics in parents’ community organizing and advocacy engagement in Chinese and East Asian contexts.
Acknowledgements
The authors are grateful to the parent organizers who participated in this study for so generously sharing their stories with us. This study was funded by (1) the National Social Science Fund of China: Research on the Innovation and Development of Social Organizations of People with Disabilities under the Background of Healthy China Strategy (22&ZD185) and (2) the Start-up Fund for New Recruits, Hong Kong Polytechnic University: “Enhancing public service access and utilization among parents of disabled children in China: is parent organization a bridge and enabler?” (P0050887).
Competing interests
None.
Shixin HUANG is an assistant professor in social work at the department of applied social sciences, Hong Kong Polytechnic University. She conducts research on advocacy and the mutual-aid organizations of parents of people with disabilities, as well as family and social care of people with disabilities and older people. Her research work appears in Social Science and Medicine, Disability and Society and VOLUNTAS: International Journal of Voluntary and Nonprofit Organizations, among others.
Yonghai CHEN is an assistant professor in the Centre for Disability Studies, Shenzhen University. He earned his PhD in public administration from the School of Government at Sun Yat-sen University. His primary research interests focus on non-profit organizations and public service delivery. His recent research project examines the administrative burdens encountered by individuals with disabilities when accessing public services in China.
Lingang ZHOU is a professor at Shenzhen University. He was the author of the first doctoral dissertation on disability welfare in mainland China in June 2005. He is the executive director of the Centre for Disability Studies of Shenzhen University, which was established in November 2022. His research focuses on disability theory, policy and practice. His major publications include Social Support and Empowerment: From the Perspectives of Urban Disability Welfare Practices (2009) and Research on the Empowerment Mechanisms of Disability Non-profit Organizations for Persons with Disabilities in the Era of Social Media (2023).
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