Smartphones as actors: A new digital disability care actor-network in China

Abstract

Disability care is an understudied yet important phenomenon within the realm of caring media studies. It not only adds another identity-based lens for caring media studies but also proposes new questions at the intersection of media, disability and cultural studies. This study proposes a Chinese contextualized understanding of disability caring media, which may have broader implications in other contexts, even a global one. Mainly based on actor-network theory (ANT), this study looks at the smartphone as a new condition and a key actor in the emerging digital disability care actor-network to examine various modes of connections and associations, especially the application-network, the device-network, and the organization-network. This study seeks to provide a better understanding as to how meanings and technologies are enacted together in everyday caring practices, and how social dynamics are assembled and reassembled in contemporary disability caring media settings.

Keywords

actor-network theory (ANT)care digital disability disabled people smartphone

According to the recent national census, there are approximately 85 million people with disabilities in China (CDPF [China Disabled Persons’ Federation], 2012). They have, however, long been marginalized in Chinese society. Caring for such a huge population, one that exceeds the total population of Germany and comprises people with a variety of needs, is a big challenge for the Chinese government to tackle, raising issues of the care of and caring for disabled people who have quite different needs, and concerns about disability care at different stages of life. Furthermore, by the end of June 2019, the number of mobile internet users in China had reached 847 million, accounting for 99.1% of the total netizen population (CNNIC, 2019). Consequently, smartphones are playing increasingly important roles in the evolving landscape of care, especially the care of disabled people, and the enormous population of disabled people has become both the object and subject of digital disability care in China in the age of the mobile internet.

Against this backdrop, this study regards the smartphone as a new form of caring media that may enhance the agency, sociality and quality of life of disabled people. In particular, this study leans on theories from the research field of Science, Technology, and Society (STS), especially actor-network theory (ANT), which proposes that humans never act alone because collective experiences are outcomes produced by an assemblage of human and non-human actions (Latour, 2005; Law, 2004). The network perspective echoes the argument that the actualizations of care are not just about caregiving or receiving care; rather, they make up a complex web or network of life-sustaining (de la Bellacasa, 2017; Tronto, 1993). Furthermore, ANT as a recent material and technological turn (Sayes, 2014), also resonates with the current appeal of a ‘materialist’ social model in the research field of disability studies (Flynn, 2017: 144).

Based on the research methods of ethnographic participant observation and in-depth interviews, this study demonstrates how smartphones have become actors of care and caring in the evolving media landscape of disability care in China. Accordingly, it understands mobile applications, smart devices, and social organizations related to digital disability care as making up a complex matrix of actors with agency as well. Focusing on this intricate, fluid, and accelerated digital disability care actor-network, this study examines various modes of connections and associations, especially the application-network, device-network and organization-network, to better understand how meanings and technologies are enacted together in everyday caring practices, and how social dynamics are assembled and reassembled in contemporary disability caring media settings.

Literature review

Disability and STS

From the 1980s, the emerging research field of disability studies coalesced around the ‘social model of disability’ (Oliver, 1990: 22; see also Goggin and Newell, 2000; Oliver, 2013). This critical approach regards disability studies as a socio-political endeavour against social oppressions in a ‘disabling society’ (Mercer, 2002: 228). Since then, the social model of disability has gained wide currency among disability researchers and disabled communities. However, this model has recently faced increasing criticism, and some scholars have suggested revisiting and reinvigorating the model in the changing context of social development (Flynn, 2017; Levitt, 2017).

The key problem with the social model of disability is that it focuses excessively on the discourse of disability, which may overlook the material world that disabled people inhabit, especially failing to productively engage with material science and new technologies (Flynn, 2017). As Shakespeare (2014: 52) suggests, ‘critical disability studies writers generally seem much more interested in texts and discourses than in the ordinary lives of disabled people’. In other words, this model steers the understanding of disability toward a politically benign focus on culture, language and discourse, which downplays the material reality of disabled people’s lives. Therefore, many scholars have suggested a refocus on the material sources of disablement to develop a ‘materialist’ social model of disability, with novel ways of considering disability that have material application (Flynn, 2017: 144).

More recently, the development of information communication technologies (ICTs) as a means of fulfilling ‘the promise of technology’ (Moser, 2006: 373) for disabled people has become increasingly influential and may lead to the reinvigoration of a material social model of disability. Indeed, scholars, especially those from the research field of STS, have long emphasized the important roles technologies play in encoding, calculating, ordering, enacting and redressing disability (Admon-Rick, 2014; Blume et al., 2014; Diedrich, 2005; Mauldin, 2014; Moser, 2005, 2006; Moser and Law, 1999; Winance, 2006). They have explored the relationship between disability and technologies and technoscience, such as ICTs, digital accessibility, and universal design, especially in regard to the role technologies play in enabling and/or disabling interactions, and how technologies are deeply implicated in how people become and are made disabled (Ellcessor, 2016; Goggin and Newell, 2003, 2006; Hamraie, 2013, 2015, 2018; Moser, 2005, 2006). For example, Ingunn Moser (2006) examined the generative and transformative power of technologies in the ordering of disability in everyday practice and demonstrated how technologies open up positions of agency and subjectivity for disabled people.

STS analysis of disability is believed to be effective in scrutinizing technological success, scientific authority, dominant innovation and political power, as well as the accompanying resistance in technoscientific controversies, but it is also criticized for overlooking the deformation of technological influence and the shaping of the disenfranchised, like disabled people (Galis and Lee, 2014). Because technology is never a neutral isolated object or a naturalized normal that only enables disabled people, it also continues production and reproduction of disability and ultimately protects domains of ableism from critical review (Kumari Campbell, 2004). As Moser (2006: 373) wrote: ‘notwithstanding their generative and transformative power, technologies working within an order of the normal are implicated in the (re)production of the asymmetries that they and it seeks to undo’.

This study seeks to add to the research by focusing on the material reality of disability from the ANT perspective, paying special attention to material science and new technologies, such as smartphones used by and inscribed upon disabled people.

ANT and disability

Originating in the research field of STS, ANT has been a frequently applied theoretical perspective and research method within a range of social science fields since the 1980s. Introduced and developed by Michel Callon and Bruno Latour, ANT can be regarded as a socio-technical research that is concerned with the dynamic and simultaneous influences of both technology and society; technology is socially constructed and at the same time constructs the social (Waldherr et al., 2019). In other words, the social and technical are inherently intertwined, co-constructing and stabilizing each other.

By highlighting the negotiation process between the social and the technical, ANT suggests the tension between structure and agency because humans can delegate tasks to technologies, and technologies can also prescribe actions to humans in turn (Latour, 1988). In this sense, ANT proposes a symmetrical approach to studying humans and non-humans in order to avoid imposing ‘a priori some spurious asymmetry among human intentional action and a material world of causal relations’ (Latour, 2005: 76). This proposed principle of symmetry suggests that everything, both human and non-human actors, can act by having an impact on others (Law, 1994: 9). Therefore, a minimalistic definition of actor within ANT is ‘anything that does modify a state of affairs by making a difference’ (Latour, 2005: 71).

These actors or actants are produced by and are in relations, especially their relations with others when different heterogeneous elements are continually assembled (Latour, 2005; Law, 1994). This relational stance indicates that different actors define and shape one another to form an actor-network (Law, 2009). Accordingly, actors and networks have even been considered as reversible categories, with a network being defined by its actors and an actor being defined by its network (Latour, 2011). Indeed, ANT aims to explore what different actors, people, and objects can accomplish once they have been linked or associated in a network (Fenwick and Edwards, 2010; Latour, 2005).

Although ANT has been subject to severe criticism (McLean and Hassard, 2004), it has been readily deployed in a number of sociological spheres (Baron and Gomez, 2016; Fenwick and Edwards, 2010). In particular, ANT has been emphasized in studying disability (Blume et al., 2014; Galis and Lee, 2014; Mladenov, 2017; Moser, 2000; Moser and Law, 1999) as a way of rethinking disability to understand how, when, and why the disabling and enabling effects emerge in different ways in different contexts (Schillmeier, 2007). Disability is itself ‘an emergent property of human and non-human interaction’ (Abrams and Gibson, 2017: 428) and ‘a simultaneous biological, material, and semiotic phenomenon’ (Galis, 2011: 825). In other words, from the ANT perspective, disability is ‘a sociomaterial assemblage, a site of network connectivity, rather than an immutable attribute of problem bodies’ (Abrams and Gibson, 2017: 436), and ‘an effect of a process of associations in a network’ (Galis, 2011: 831, emphasis in original). Accordingly, ANT can reveal the enactment of disability in everyday life by demonstrating how disability emerges through actor-network interactions, and how both hardware and software as actors can impact disabled people (Abrams and Gibson, 2017; Galis, 2011).

However, the ANT perspective on disability also faces criticism. The first critique is that ANT does not pay adequate attention to questions about meaning (Mol, 2008; Winance, 2006), because it does not ask what it really means for the network objects (Abrams and Gibson, 2017). This study, therefore, not only charts the actor-networks that organize humanity but also illustrates which forms are most fulfilling for humans so organized. The second critique is that ANT is uninterested in power asymmetries of network formation, which does not allow for recording discriminations and exclusions (Galis, 2011). In other words, it may overlook the efforts, practices, and functions of less visible actors that are excluded from the network. Accordingly, this study follows Moser’s (2005) efforts to avoid reproducing asymmetries in the distribution of power and agency. In particular, it will apply ANT to examine smartphones as actors in digital disability care in China’s context, tracing how different actors come to be assembled, associate and exercise force, and persist or decline in the new disability care actor-network.

Background and methods

Due to the absence of the role of the state within the social welfare system for disabled people in China (Fisher et al., 2011), the Chinese government for a long time did not consider the disability issue to be a policy priority (Fisher and Jing, 2008). However, as China gradually became a global leader in digital technologies, the Chinese government began to integrate digital technology into disability policy. Since 2015, when it made it a disability policy to achieve inclusive development, the Chinese government began to use digital technology as a ‘lever’ in disability policy and took pivotal roles in formulating and implementing digital disability policies (Goggin et al., 2019: 35). Since then, there has been a series of Chinese-style e-solutions like ‘Internet + disability’ in 2016 and ‘e-commerce + disability’ in 2017 to guarantee Chinese disabled people’s access to ICTs, improve their quality of life and ensure equal rights. People with disabilities also apply their own agency through participation in the digital economy, and the state has opened new and more opportunities for digital inclusion for disabled people (Lin et al., 2018, 2019). During this process, China has demonstrated its unique features: it has both very strong privately owned technology companies and a state with a very strong role in guiding and directing the actions of these technology companies (Goggin et al., 2019: 35). This context is beneficial to disability care in China, and it is a crucial part of the background of this study.

To target specific disability care in China, we employed the research methods of virtual ethnography and in-depth interviews to trace how caring action was articulated through associations between human and non-human actors. Virtual ethnography refers to the ethnography in, of and through the virtual, through which it demonstrates a high degree of interpretive flexibility as an adaptive ethnography (Hine, 2000; Kozinets, 2010). Like traditional ethnography, which allows researchers to examine society through first-hand involvement with the research subject, virtual ethnography relies on fieldwork to collect data and obtain insights (Hine, 2000). The ethnographic fieldwork in this study lasted for more than two years (March 2017–December 2019) and produced more than 200,000 words in field notes. We purposefully identified our virtual field sites related to disability care, including 12 social media accounts (e.g. WeChat public accounts), 18 social media groups (e.g. QQ and WeChat groups), 16 online forums (e.g. Baidu Tieba), and 20 mobile applications (both Android and iOS applications). Then we conducted fieldwork at these sites in a regular and systematic way to observe and record what was going on, especially how the actors worked to enact digital care. We also tried and experienced all care-related functions of the apps ourselves.

However, virtual ethnography is not limited to the virtual, because all places are becoming increasing fluid, and the binary of virtual/physical has become blurred (Shumar and Madison, 2013). Accordingly, ethnography in this study is ethnography in, on, through, around and with the smartphone, which is a hybrid, including its inner application-network, external device-network, and related organizations. Therefore, the field sites were not limited to the ‘virtual’ field sites listed above, but also included the ‘real’ field where we observed five disabled participants and how they used smartphones and related applications and devices for care in the ‘real world’. Additionally, we visited two disabled-related organizations in the offline world for fieldwork observation. We also participated in some disability-related volunteer activities, both online and offline.

Furthermore, some have argued that interviewing deserves greater appreciation and should sometimes take the centre-stage within virtual ethnography (Hockey, 2002; Miller and Sinanan, 2014; Skinner, 2012). Accordingly, we conducted 21 in-depth interviews (16 telephone interviews and 5 face-to-face interviews) to better explore the behind-the-scenes stories, experiences, and thoughts of disabled people in the field. The duration of each interview was approximately one hour, and all interviewees were kept anonymous.

The smartphone as a new condition and key actor

Within the background of digital disability policies and development discussed above, most people with disabilities are more likely to use digital resources, ICTs and smartphones in particular, as a condition for care and as key sites of care within China’s context. Indeed, mobile phones and mobile communications have become a part of daily life, especially for everyday transnational communications, challenging and rearranging existing power structures that are nonetheless quite stable (Horst, 2006; Ling and Horst, 2011). However, smartphones like the iPhone represent a distinctive moment and poignant symbol for rethinking mobile media and communication (Watkins et al., 2012) because they represent ‘a historical conjuncture in which notions about identity, individualism, lifestyle, and sociality – and their relationship to technology and media practice – require rearticulation’ (Hjorth et al., 2012: 1).

For example, smartphones as locative media offer new ways to record and document the current moment, which can affect how one remembers the past, the place, and the self through diverse meaning-making practices (Özkul and Humphreys, 2015; Wilken et al., 2019). Moreover, smartphones as mobile media offering new embodied, sensory, corporeal and emotional experiences are increasingly engaging and entangling with our contemporary ways of living, working and playing, becoming part of the atmosphere of home and creating new ways of feeling at home (Pink et al., 2018). Some scholars have even argued that smartphones and their integrated social media such as LINE can operate ‘as a digital form of kinship and genealogy’ (Ohashi et al., 2017: 11), which may challenge the changing nature of the meaning of family in an age of networked media. Smartphones may reconfigure relationships between parents and children, especially between migrant mothers and their left-behind children, to propose ‘mobile phone parenting’ depending on long-distance communication (Madianou and Miller, 2011: 457). The smartphone’s affordability has facilitated the increasing prevalence of an ‘always on’ culture of ubiquitous connectivity that creates a new type of indirect and mediated interaction at a distance – ‘ambient co-presence’ (Madianou, 2016: 183). In this sense, smartphones have been deeply integrated into people’s everyday lives, especially in and around family communication, with the possibilities of offering ‘new ways of care-at-distance’ (Ohashi et al., 2017: 11).

Particularly in China, with the rapid development and prevalence of ICTs, mobile communication and mobile media, the smartphone has become more than a communication tool, playing an increasingly important role in Chinese people’s everyday lives, both in rural and urban areas (Yan and Schroeder, 2019). In particular, the Chinese ‘super app’ WeChat, embedded in smartphones, has become a unique kind of mega-platform and even a ‘quasi-utility’ (Chen et al., 2018: 44), which has become ‘super-sticky’ and ‘inseparable from its users’ everyday habits’ (Chen et al., 2018: 2). This unique feature has significant impacts across different sectors of Chinese society (Cui, 2016; Huang and Miao, 2020), creating the ‘panoptic presence’ that may reframe the parent–child relationship in the Chinese trans-local context (Yu et al., 2017: 123).

Overall, smartphones exert powerful effects – both positive and negative – especially on family practices and care at a distance (Madianou, 2016; Madianou and Miller, 2011). In other words, the smartphone is not necessarily an unadulterated blessing for communication; it may also bring unforeseen burdens and obligations (Horst, 2006). Especially in the Chinese context, it may become ‘disruptive’ (Huang and Miao, 2020: 1) and create new digital divides in different settings (Yan and Schroeder, 2019). This scenario is particularly true for disabled people, for whom smartphones create new affordances (Goggin, 2016; Goggin and Newell, 2003, 2006) while also presenting new threats of inaccessibility and exclusion (Alper, 2016; Ellcessor, 2016), especially in the Chinese context (Lin et al., 2018, 2019).

However, during our fieldwork observation and interviews, we found that smartphones exerted overall positive impacts on disabled people and significantly influenced their care. For example, smartphones can increase disabled people’s access to information. Traditionally an information-disadvantaged group, disabled people can now access healthcare information more easily, which may significantly improve their care and quality of life. All interviewees in this study stated that they benefited from information access via smartphones. As one of our interviewees, Ms Zhao, told us:

it is a way to connect with the world, especially for people like me. It is almost impossible for me to go out to the hospital or to find a doctor once I have a problem. I can turn to my phone first to find some answers by myself.

Furthermore, smartphones also allow disabled people to increase social interaction and engage with the community. Some participants in this study stated that they did not have adequate communication skills for social interaction, thus putting them at a high risk of isolation and loneliness. With smartphones, especially mobile social media such as QQ and WeChat, disabled people can now increase the frequency and quality of social interactions to broaden social networks, develop meaningful relationships and reduce negative feelings. They can also establish their own online groups, especially with QQ or WeChat, to create a sense of community with other disabled people whom they would not otherwise have met. During our fieldwork, we found and participated in many WeChat groups related to disability care. We even became involved with a WeChat group titled ‘National Core Group Against AIDS for Gay Persons with Hearing Impairments’ to observe how users used this group to share knowledge via sign language about AIDS prevention and hold a ‘silent’ lecture on AIDS prevention through live streaming.

Such observations suggested the smartphone was not just a tool of communication; it is a condition of an alternative life for disabled people. This guaranteed the possibility of it being a condition for an actor-network because it made different elements come together and held them together to assemble networks that produced different forces and effects. During this mediation process, the smartphone can continually transform, translate and modify meanings or elements related to disability care to produce different assemblages, actions and effects. In this sense, smartphones are not a means, but rather mediators or actors with agency to modify the state of affairs of disability care. Furthermore, since ‘actors are not equal’ (Baron and Gomez, 2016: 141), the smartphone has demonstrated its special role as a key actor in the making of a new digital disability care actor-network; ‘An actor-network “emerges” when a key actor successfully aligns a series of other elements that do that key actor’s “bidding”’ (Michael, 2017: 34).

Regarding the smartphone as a new condition for and a key actor in the new digital disability care actor-network in China, the following sections further explore a number of questions: What kinds of connections were created among agents related to disability care? What kinds of actor-networks were produced through these connections? What ends were served through these networks? Particularly from an ANT perspective, besides the obvious human actors such as disabled people, their peers, and their family members, the following sections mainly focus on non-human actors and networks, including the application-network, device-network and organization-network.

Application-network

What differentiates smartphones from telephones or other cellphones may be operating systems such as Apple’s iOS and Google’s Android, as well as the mobile applications (apps) based on these operating systems. A galaxy of apps and built-in features have transformed the smartphone into a digital Swiss Army knife that can help users expand their bodies, minds and intellects (Park and Kaye, 2019). These app-actors are further enrolled in the new digital disability care actor-network, thus making the network come into being; as parts of the network, they can even form a whole new network, namely, the application-network, which includes the apps themselves, the app store, developers, users, algorithms, prices and so on. During our fieldwork and interviews, we witnessed how this application-network prescribed particular actions for disabled people and made some differences in their care.

First, the general popular apps, to some extent, have greatly changed the lives of disabled people in China. These apps include, but are not limited to, social media apps like QQ and WeChat; shopping apps like Taobao, Jingdong and Pingduoduo; news and search apps like Baidu and Toutiao; video apps like Youku and iQIYI; travelling apps like Didi, Mobike and Ctrip; navigation apps like Gaode Map and Baidu Map; and food-delivery apps like Meituan and Eleme. Such apps are usually available in different versions with special barrier-free designs for different types of disabled people. Most interviewees stated that they used at least some of these apps and services, which enhanced their quality of life, thus being positive for their self-care or family care. As one interviewee, Ms Sun, told us:

I can be more independent now because I can do lots of things with my phone. I can take care of myself and live alone for some days at home so that my parents can do some more jobs outside.

Second, many new health care apps related to disability care have shown some positive effects on disabled people. Representative apps of this sort include but are not limited to: Dingxiang Yisheng, which claims to provide ‘reliable healthcare information and services’; Pingan Haoyisheng, which claims to provide ‘online health consultation and health management’; and Chunyu Yisheng, which claims to provide ‘online physician consultation’. Even though these apps were not specially created and designed for disabled people, some of the interviewees still stated that they would turn to these apps to acquire some health care knowledge, especially knowledge related to their disabilities. However, none of them ever successfully conducted an ‘online health consultation’ because such an operation was too complicated for them and they did not think the online consultation was reliable enough. As one interviewee, Mr Li, told us: ‘I prefer the doctor by face-to-face. But the phone still helps me. I can use it to make a reservation on the WeChat Public Account of the hospital.’

Third, there have been many apps specifically created for people with particular disabilities, especially for their self-care and self-rehabilitation. For example, we found at least 22 apps for people with hearing impairments. We specially focused on Voibook, one of the most popular apps, for fieldwork observation and offline interviews. This app positions itself as a ‘barrier-free communication tool for people with hearing impairments’; its most prominent function is ‘translation’, which translates voices and words in real time so people with hearing impairments can ‘listen and talk’ with other people smoothly in both in-person conversations and phone calls. Mr Shi, the founder and CEO of Voibook Technology, who is also a person with severe hearing impairments, argued that this app could help people with hearing impairments be independent and take care of themselves, ‘almost like normal people’. Our interview with him went smoothly with the help of this app. Voibook also provides other functions, such as video chatting, job listings, sign language lessons, news communicated via sign language, social networking via sign language, and so on. Voibook also provides language-rehabilitation training for people with hearing impairments, which also benefited Mr Shi personally. He showed us how this feature worked on the app and told us he could not enunciate clearly three years ago. But he had improved much and could communicate with us smoothly during our interview.

Device-network

Besides facilitating the creation of an inner application-network, the latest generation of smartphones is also becoming a hub that connects and controls various smart devices, creating an external device-network. As Latour (2005: 217) argues: ‘an actor-network is what is made to act by a large star-shaped web of mediators flowing in and out of it. It is made to exist by its many ties: attachments are first, actors are second’. Indeed, during our fieldwork, we found there were at least two main categories of device with different forms of mediation increasingly becoming attached to disabled people’s smartphones, turning devices into actors and the smartphone into ‘the moving target of a vast array of entities swarming toward it’ (Latour, 2005: 46).

The first category is the so-called ‘wearable device’ that can be incorporated into clothing or worn on the body like accessories. Currently, there is a variety of wearable devices, such as smart glasses, smart bands and smart watches, that are available globally and are especially popular in China. However, most of the smart glasses are too expensive for Chinese disabled people; only one interviewee ever owned smart glasses, but he found them not very useful for his self-care in daily life, so he abandoned them. Interviewees from remote rural regions often have never even heard of such devices, indicating the inequality among actors in the digital disability care actor-network. The most popular wearable device we found during our fieldwork was the smart band, which was quite cheap and useful for daily health care monitoring. For example, the function of a vibrating alarm was very useful for people with hearing impairments; the event-reminder function was particularly useful for people with Alzheimer’s disease; sleep monitoring and heart-rate monitoring not only helped disabled people but also their care providers; idle alerts and real-time activity trackers were useful for their rehabilitation exercises. Mr Shi told us that Voibook was also developing smartphone-based listening devices that were much cheaper and smarter than traditional listening devices.

The second category is the so-called ‘smart home device’, which is connected with other devices via a network so it can be remotely monitored, controlled, or accessed and provide services that respond to the users’ needs. These devices, including routers, speakers, televisions, cameras, plugs, lighting, thermostats, vacuums, door locks, voice assistants, security systems and so on, can significantly contribute to the health care and well-being enhancement of disabled people. For example, Mr Zhou, who has near-total paralysis, showed us how he used his voice and the two fingers he could still move to control a set of such smart home devices. He could not completely take care of himself, but he was happy such devices connected to the internet and his smartphone could significantly relieve his parents’ burden of taking care of him. However, most interviewees could not afford a complicated set of smart home devices; again, they usually used the cheapest ones, such as plugs, speakers and voice assistants, to accommodate some caring needs. Such devices also made it possible for parents to leave home for work while keeping an eye on their disabled children via their smartphones connected with cameras at home.

Overall, the smartphone-centred device-network was meaningful in the new digital disability care actor-network. However, our fieldwork, interviews, and our own trial suggested this device-network was still in its very early stage, with much room for improvement and development. However, most interviewees, especially Mr Zhou, placed great expectations on the future development of such device-networks, hoping they may further improve the quality of self-care and daily life. We also hope such device-networks may keep developing and reassembling in the future; indeed: ‘assemblage is a process of bundling, of assembling, or better of recursive self-assembling’ (Law, 2004: 42).

Organization-network

ANT challenges not only the assumption of the separation between the human and non-human worlds, but also the a priori division of the world into micro and macro contexts (Gad and Jensen, 2010; Law, 1994). Furthermore, it attributes agency not only to human individuals and non-human objects, but also social determinants and social structures (Latour, 1996). Therefore, ANT is used both to examine the micro context in which human actors directly interact with technology actants and, at the same time, to draw conclusions about the macro context in which the actors’ and actants’ practices are situated (McLean and Hassard, 2004). In the new digital disability care actor-network, there is not only the inner application-network and external device-network in the micro context, but also an organization-network in a relatively macro context. This kind of organization can actively address disability issues and is believed to be of vital importance to the realization of an inclusive society (Galis, 2011).

The China Disabled Persons’ Federation (CDPF) is the most influential organization for Chinese disabled people (Goggin et al., 2019) and has become a national umbrella organization, with branches at almost every level of government, from the central government to the county governments. Accordingly, during our fieldwork, we found at least 25 mobile apps and over 100 WeChat public accounts operated by or related to CDPF at different levels. However, during our trial, we found most of these apps to be not user-friendly for us, let alone for disabled people; none of our interviewees ever used them. In other words, the most influential organization that should have been a key actor in the digital disability care actor-network was not really connected to or assembled in this network. Similarly, disability-related non-governmental organizations (NGOs) were not successfully involved in this network either. However, smartphones do enact, affiliate and connect many other organizations different from and beyond traditional organizations.

Mainly based in QQ and WeChat groups, Chinese disabled people have founded many active and self-motivated organizations, the so-called ‘disabled people’s self-help organizations’ (DPOs). We became involved in many DPOs, serving as volunteers, observing their ‘self-help’ practices, and interviewing some participants. Some of these DPOs did not directly focus on disability care but would occasionally highlight such issues, so these DPOs were beneficial for disabled people’s self-care according to our fieldwork. For example, one of our interviewees, Ms Wu, was hemiplegic, but she was involved in a WeChat group regarding ‘barrier-free travelling’ for three years. She told us she never thought she could travel far away by herself due to her hemiplegia, but by 2019 she had travelled several times with group members and by herself because she learned from the WeChat group how to take care of herself during the journeys.

Some DPOs, by contrast, were created for some specific disability care issues, such as Alzheimer’s disease and amyotrophic lateral sclerosis, or focused on specific rare diseases, such as porcelain doll disease, thus relating more closely with disabled people’s daily self-care. For example, Mr Zheng told us he mainly learned the most up-to-date medical information about cerebral palsy from the WeChat group, and if he had any questions or confusion about his self-care, he usually turned to his group members for help first. There were also many WeChat public accounts focused on ‘translating’ health care-related information and knowledge for people with hearing impairments. As one interviewee, Mr Wang, told us ‘most TV programs do not provide the hand language translation. So I have to mainly rely on WeChat groups or WeChat public accounts to learn such information or knowledge.’

Indeed, during the outbreak of the novel coronavirus, which was first reported in Wuhan in December 2019, many disabled people were infected and, worse than that, forgotten. A 17-year-old with cerebral palsy who could not speak or look after himself died after being left alone and without care for six days while his father was quarantined for coronavirus checks. Many disabled people also found it difficult to acquire updated information and self-protection knowledge during the epidemic as so many WeChat groups and public accounts were created for self-help. We also served as volunteers in two WeChat groups to help find reliable information and knowledge to be translated into sign language and then spread it via WeChat groups and public accounts so people with hearing impairments could learn how to protect and take care of themselves.

Besides DPOs, there are many market-oriented enterprises in the digital industry founded by disabled people and assembled into the new digital disability care actor-network. Indeed, there are many digital and technology companies behind the application- and device-network, and they have all been associated with the new care actor-network to varying degrees. However, we found that some market-oriented enterprises founded by disabled people were more deeply involved in this network. For example, Voibook Technology was founded by Mr Shi, who was a person with severe hearing impairments himself; Shengbang Technology was founded by Mr Yuan, who was born with infantile paralysis. These disabled people vividly experienced and recognized problems with the care of their peers, so they developed technical products or services that accommodate their peers’ specific caring needs. However, they both chose the organizational form of market-oriented enterprises rather than NGOs, DPOs or social enterprises, because this form was the most practical and sustainable form in China, according to their own experiences over the years. However, they also admitted that this path still has a long way to go.

Concluding remarks

Inspired by ANT’s self-positioning as a sociology of associations (Latour, 2005; Law, 2009), this study also suggests a possible disability care of associations in which disability care refers to a movement of connections in action, including the application-network, device-network and organization-network. In this sense, this study attempts to redefine care as a movement of reassembling and reassociation rather than as a specific realm, a special domain or a particular sort of thing. In other words, this study is not interested in what digital disability care is, but how it works, especially how the new digital disability care actor-network is assembled, enacted and ordered; how it holds together; and how it may fall apart.

Although the ANT proposes a flat ontology to avoid a dualist ontology that distinguishes human and non-human, there are still inequalities within the new digital disability actor-network in different dimensions. First, social inequality, especially the digital divide, has forced disabled people into more deeply unequal positions during the digital wave, thus making them one of the most marginalized but ignored disadvantaged digital groups. Second, even though some disabled people may have the opportunity to access ICTs like smartphones, different types of disability cause inequalities during usage of smartphones, applications and devices, indicating a hierarchical distribution of opportunities. Third, compared with big ICT companies, disabled people are in a much more disadvantaged position that allows the former overwhelmingly to dominate the design of the devices without fully considering disabled people’s needs.

This inequality leads us to rethink the political issue of ANT and the politics of disability care. Therefore, this study highlights the fact that every time we make reality claims in disability care, we are making some social reality more or less real. Therefore, we need to bring politics back into digital disability care studies in the future. In particular, there has been ‘a technology-determinist perspective on the power of digital technology in enabling persons with disabilities to be full and autonomous participants in economic and social lives’ (Goggin et al., 2019: 39), so we need to be particularly aware that when ANT leads us toward the victors in the digital disability care actor-network, it may further marginalize the voices of those who are excluded from or disadvantaged in the network.

Footnotes

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research has been supported by the National Social Science Fund of China, as part of a project entitled ‘Digital Empowerment and the Social Inclusion of People with Disabilities in China’ (19CXW037).

Authors’ biographies

Zhongxuan Lin (PhD) is a Professor at the School of Journalism and Communication, Jinan University, Guangzhou, China. His research interests include disability studies, cultural studies and communication studies. His work has appeared in the Chinese Journal of Communication; International Journal of Communication; International Journal of Cultural Studies; Journal of Cultural Economy; Disability & Society; Media, Culture & Society; New Media & Society and Information, Communication & Society among others.

Liu Yang (PhD) is an Associate Professor at the School of Communication and Design, Sun Yat-sen University, Guangzhou, China. Her research interests include disability studies and political studies. She has published articles in New Media & Society, Information, Communication & Society, Disability & Society and the International Communication Gazette among others.

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