Disability and employment in China: a Guangzhou case study

Abstract

This study explored perceptions of disability and attitudes towards employment within the context of the ableist construction of disability in China. Interviews were conducted with thirteen young people with intellectual and developmental disabilities and thirteen of their parents in Guangzhou, China. Thematic analysis of the interviews reveals that while most young participants either deny their disability identity or struggle with it, some have developed a positive understanding of disability. Parents create a protective family shelter in their children’s work lives, leading to their children’s lack of employment awareness. These parents also expect their children to achieve recognised social status through employment. This study highlights the need for disability studies to appreciate the importance of understanding a localised construction of disability. It also recommends that service providers in China address the limited support in raising employment awareness of families with young persons with intellectual and developmental disabilities.

Points of interest

• This case study explores what a small group of young Chinese people with intellectual and developmental disabilities and their parents think about disability and employment.

• Some young disabled participants see themselves as having different characteristics to their non-disabled peers. Some of the parents of the young participants think their children are disabled by people not understanding disability and a lack of support.

• Most of the young disabled participants find it hard to accept their disability as part of their identity and face challenges in understanding what it means to find jobs and work.

• Many of the parents describe their disabled children as ‘abnormal’ compared to ‘normal’ non-disabled peers and hope employment will help their children be seen as capable as their non-disabled peers.

• The study recommends professionals and disability organisations provide families of young people with intellectual and developmental disabilities adequate support to understand disability and employment-related information and opportunities.

Keywords:

• Ableism
• intellectual and developmental disabilities
• young people and parents
• disability identity
• employment
• China

Introduction

This paper examines how young people with intellectual and developmental disabilities and their parents perceive impairment, disability identity, and employment in China. Despite evidence suggesting that young individuals with intellectual and developmental disabilities hold negative views of themselves (Chen and Shu 2012), discussions on their perceptions of impairment and disability identity remain limited. In the context of Chinese culture, where strong familial bonds are prevalent and parents are deeply dedicated to their children’s upbringing (Bai 2020), the concept of prolonged parenting emerges as a significant theme in the literature on parents and family caregivers of young people with intellectual and developmental disabilities (Baker et al. 2020; Pan and Ye 2015; Zhao and Fu 2022). Given that employment in China is considered a way to actualise one’s societal values (Zhang and Wang 2017), it is worth exploring how parents’ perceptions and attitudes of disability and employment shape their children’s understanding of disability and their attitudes to and experiences of employment.

This paper adopts Studies in Ableism (SiA) (Campbell 2009) for its theoretical perspective. While ableism has been extensively used as a lens to understand the marginalisation of disabled people in the Global North, its application in examining the nuances of disability and ideal personhood within the Chinese context has received less attention. Moreover, the definition and conceptualisation of ableism tend to vary across different studies and contexts. In the case of China, previous research on disability has often employed the term ableism without in-depth definitional clarity or conceptual specificity (Ma 2020; Wu 2020; Xiang 2020).

SiA conceptualises ableism as a system of knowledge formation and practice, a constellation of ideas that frames ‘abledness’—the preferred attributes in society—to differentiate and classify populations, thereby impacting individuals’ lived experiences (Campbell 2019). In essence, SiA transcends a mere focus on disability to examine broader systems affecting the lives of those undervalued by society. Drawing on SIA, this study aims to explore and conceptualise the various and complex ways of living with ableism and disability. It seeks to understand parents’ approaches to their children’s employment and how these approaches shape their children’s attitudes towards work within the context of ableist constructions of disability in China.

This paper adheres to the term ‘disabled people’ rather than ‘people with disabilities’, consistent with the lens of SiA. The former term recognises that ableist thinking and practices form, operate and maintain the notion of disabled people, affecting their lived experiences (Campbell 2009). Furthermore, the paper acknowledges that impairment and disability are intertwined with the experiences of disabled people. People’s experiences of impairments interact in complex and intersectional ways with other relevant social categories, social oppression and psychological dimensions, which form their lived experiences of disability (Shakespeare and Watson 2015).

The paper begins by reviewing existing research on the perceptions and attitudes towards disability and employment held by young people with intellectual and developmental disabilities and their parents. It then demonstrates how SiA provides a theoretical lens for this study, exploring the ableist constructions of disability at the macro level and perceptions and experiences of disability at the individual level in China. Following this, it applies SiA perspectives to understand the construction of abledness and disability within China’s specific political, economic and cultural contexts. The focus then shifts to the qualitative methods used to investigate how China’s ableist constructions of disability influence the ways in which young people with intellectual and developmental disabilities and their parents perceive disability and approach disability employment.

Perceptions of disability and employment

Previous research on perceptions of disability among young people with intellectual and developmental disabilities in the Chinese context has shown that they often view themselves as ‘odd’ and ‘sick’, struggling with the label of disability and developing strategies to mitigate its impact (Chen and Shu 2012). Similarly, negative perceptions of disability have been observed among parents of children with intellectual and developmental disabilities. However, just as with young people, the perceptions of their parents remain under-researched. Studies have found that these parents use terms like ‘abnormal’ and ‘normal’ to differentiate their children from non-disabled individuals, and they often seek improvements or cures to help their children ‘catch up’ with their non-disabled peers (Guo 2016; Tait et al. 2016). However, conflicting findings by Chu et al. (2017) reveal that some parents are offended when the term ‘abnormal’ is used to describe their children.

Regarding employment, one study reported that young people with intellectual and developmental disabilities expressed strong desires for employment, yearning for a better life (Xu and Zhou 2016). In contrast, another study found that parents gave little thought to the employment prospects of their autistic adolescent and adult children, with the majority remaining at home (Hua 2017). Some parents were reported to have negative attitudes, including worries and a lack of confidence in their children’s ability to work (Baker et al. 2020; Xu, Dempsey, and Foreman 2014). Additionally, while the concept of prolonged parenting was evident, some parents still hoped their children would gain employment and achieve financial independence (Zhao and Fu 2022). However, it remains unclear what parents specifically mean by ‘independence’, particularly in the context of prolonged parenting and its implications for young people’s experiences.

The importance of this study lies in bringing together the perspectives of both young people and their parents, exploring how each influences the lives of the young people, their self-perception, and attitudes towards employment. This study seeks to provide a deeper understanding of the subject and resolve previous research’s conflicting findings through the lens of SiA. It explores and conceptualises the various and conflicting experiences of living with ableism and disability, parents’ approaches to their children’s employment, and how these approaches shape their children’s experiences and attitudes towards employment within the context of ableist constructions of disability in China.

The lens of studies in Ableism

SiA provides three theoretical perspectives to explore China’s constructions of disability and perceptions of disability and employment of young people with intellectual and developmental disabilities and their parents. Firstly, SiA asserts that the concept of abledness is trans-cultural, varying in its presentation and impact on disabled people’s lives in different contexts (Campbell 2021). A growing body of literature emphasises the need to examine specific understandings of disability depending on certain contexts (Barker and Murray 2010; Dauncey 2020; Meekosha and Soldatic 2011). In doing so, research contributes to understanding how individuals and communities perceive and respond to disability, shedding light on practical changes for local disabled people (Dauncey 2012; Whyte and Ingstad 2007). Hence, SiA offers flexibility and adaptability for studies exploring the contextualised notion of abledness, its construction of disability, and the ways of living with disability in different contexts, such as academia, education and employment (Baglieri and Lalvani 2019; Brown and Leigh 2020; Harpur 2019).

Secondly, SiA asserts any inquiry into ableist constructions of disability needs a brief apriori discussion around abledness, attributes of human beings deemed abled and preferred and those that fall short (permanently or temporarily) of ableist norms around citizenship in a given context. Campbell’s work goes beyond disability to better understand the kinds of bodies/­citizens/workers a society values and the practices of differentiating and assigning lower ranks to the less valued, useless, even pathetic persons.

Thirdly, the focus on ableism as processes and practice promotes a new We-I perspective. The concept of ‘We-I’ combines ‘We’ and ‘I’ in a symbiotic relationship that holds the individual and community together to question: how does the ableist society function to shape and form ‘We-I’ to be in this moment? (Campbell 2019). In this light, SiA theorises about different ways of living with ableism, including internalised ableism, ambivalent and conflicting responses to ableism, and counter-ableist understandings of disability (Campbell 2009).

Internalised ableism is a state of actively or passively embracing the notion of ableness and adopting ableist practice (Campbell 2008). It stems from two strategies. The first involves continuous participation in the processes of disability disavowal and taking ableist practices, such as differentiating from and derogatorily ranking other disabled people. This is often framed as ‘defensive othering’ (Campbell 2008). The second strategy is an effort to align oneself more closely with the notion of ableness. Consequently, internalised ableism unwittingly performs ableism by ‘blaming the victim’ (Campbell 2009); i.e. attributing the cause of the disabled state to the impairment itself. However, individuals do not always completely uncritically absorb negative representations of disability. Some may have conflicting responses to ableism that dynamically coexist with internalised ableism as people cannot fully detach disability from its negative association, resulting in an ongoing state of ambivalence (Campbell 2009). In certain instances, individuals may develop an alternative understanding of disability based on a counter-ableist notion of disability, challenging the prevailing ableist perspectives (Campbell 2013).

The constructions of abledness and disability in China

Based on the three theoretical perspectives of SiA, this section first looks into the formation and notion of abledness – the imagination of abledness in China - which aligns with the concept of ‘We-I’. The section then moves to discuss how China’s imagination of abledness guides the construction of disability through the elements of ableist practices.

The formation and notion of abledness in China

It can be said that China’s notion of abledness is generated in the context of nation-building. Post-1956, as China became a Socialist state, collectivism emerged as the prevailing ideology, with Chinese people, including those with disabilities, being collectively defined as ‘the people’ (ren min), formulated as the master of the country, having ‘all power… to administer state affairs and manage economic, cultural, and social affairs’ (Article 2; Constitution of the People’s Republic of China, 2018). This era fostered a collective identity, leading to a focused effort on socialist modernisation and national development.

The introduction of capitalism in the late 1970s transitioned China towards ‘Socialism with Chinese characteristics’, prioritising economic growth and blending developmentalism and individualism with collectivism (Qu 2019). The new ideologies and their integration with collectivism are particularly crucial to understanding the formation and notion of abledness in China - the preferred attributes of the people for achieving the national goal of socialist modernisation.

Adapting Kleinman et al. (2011) concept of the dual-self, Lin, Levy, and Campbell (2024) describe how Chinese peopleship education fosters a blend of individualism and collectivism, aiming for ‘all-round’ individual development to support the socialist cause (Law of the People’s Republic of China on the Protection of Minors, 2020). The dual-self comprises the small self that is self-enterprising and centred on individual interest (individualism), and the great self that is based on the interest of the country (collectivism) (Kleinman et al. 2011). While the small self is enterprising for the sake of oneself, it is also for the development of society and the country, which is driven by the great self. In this light, the small self and great self are not contradictory but are encouraged to foster holistic individual growth to become ‘builders’ to the socialist cause’ (Article 1; Law of the People’s Republic of China on the Protection of Minors, 2020). Hence, China’s imagination of abledness is that, while enjoying peopleship rights, the people are required to be self-enterprising and capable of participating in and contributing to social development.

Furthermore, the notion of dual-self aligns with the concept of ‘We-I’: both hold the individuals (I) and community (We) in a symbiotic relationship (Campbell 2019). In the context of China, ‘We’ encompasses the family, society, and the nation with which the ‘I’ is interrelated and associated. Lau (1996, p. 360) argues that in reality there is no ‘We-I’ as Campbell (2019) puts it, rather ‘… there is only the concept of ‘We’, but not ‘I’. Everything connected with ‘I’ is subsumed under ‘We’’. We suggest that by incorporating sensitivities of exclusion and promoting better inclusion, disabled people and their families are continually engaged in an ongoing field of tension between the individual (I) and community (We) relations.

The focus on peopleship education emphasises the importance of ablement – a term proposed by Campbell (2019) referring to the process of becoming abled - while leaving anyone left behind as a potentially peripheral person (Lin 2017). In the next section we analyse how the imagination of abledness is connected with the construction of disability in China.

The ableist construction of disability in China

The previous section has discussed that Chinese individuals, including disabled persons, are termed the people to be the masters of the country. China’s imagination of abledness is that while entitled to peopleship rights and to take part in administering state affairs, the people are expected to be self-enterprising and capable of participating in social and national development. This section reveals how the notion of abledness formed in the process of China’s modernisation has guided the ways in which disability and disabled people are constructed.

The Convention on the Rights of Persons with Disabilities and amendments to China’s disability law (Law of the People’s Republic of China on the Protection of Disabled Persons, 2008) theoretically safeguard disabled rights. Yet, China’s disability law adopts an ableist stance, labelling disabled people as ‘abnormal’ [sic] and ‘partially or wholly losing the ability to perform an activity in the way considered normal [sic]’. The Chinese disability terminology, can ji, combining characters for ‘incomplete’ and ‘ill’, further stigmatises disability as physical deficiency and abnormality. This portrayal enforces ableism, differentiating and lowering disabled people from those with able-bodiedness and able-mindedness (Campbell 2019).

Moreover, disability is portrayed as undesirable in China, with initiatives like ‘Disability Prevention Day’ and the National Disability Prevention Action Plans aiming for a ‘healthy China’ inadvertently sidelining disabled individuals from the vision of national progress. These health-focused plans reveal a preference for able-bodiedness, risking the full inclusion of disabled people. In this light, the rights entitlement is in the sense of offering disabled people extra help out of the national virtues and Chinese individuals’ merits of compassion-based humanness (Lin et al. forthcoming). Thus, despite formal recognition of their rights, it is uncertain whether disabled people can enjoy the same social status and full inclusion in society as those considered fitting in the scope of the imagination of abledness (Liao 2020; Qu 2019).

Meanwhile, disabled people are educated to develop a ‘spirit of tireless self-improvement’ in order to overcome difficulties caused by their impairments (China Central Television 2019). Disabled people’s spirit of self-improvement is seen as compensation for their physical and mental impairments and a demonstration of their capability to participate in and contribute to social development. This is a way of rendering disabled people evolving into ablement –the process of becoming abled and adapting to the society centred on able-bodiedness and able-mindedness (Campbell 2019).

In summary, in the context of focusing on development, China envisions the people as a strong, self-enterprising workforce contributing to societal growth. Disabled people, constructed as lacking the ability to perform activities, are positioned in a marginalised status from the nation’s preferred characteristics of the people. Disability is considered preventable, challenging the national goal of cultivating a robust and capable population. Meanwhile, disabled people are encouraged to meet societal expectations of abledness through a spirit of self-improvement. If not, their theoretically protected rights are often seen as extra care and assistance, framed within a perspective of pity.

Based on the understanding of the construction of abledness and disability in China, this study investigated how the ableist society shapes and forms ‘We-I’ (i.e. young people with intellectual and developmental disabilities and their parents) to have different ways of living with ableism; that is, how they perceive disability and approach employment under China’s ableist construction of disability.

Methods

Settings and participants

This study was conducted in Guangzhou, one of China’s biggest cities. The focus on a single city provides detailed data in a specific area. The study did not seek to generalise across China because demographic and employment situations vary among cities in China depending on local policies, economic development and social climates. Moreover, as a metropolitan city with high labour demands, Guangzhou has attracted people from different parts of China, resulting in diverse backgrounds and experiences among its residents. The city’s urban character and demographic characteristics were beneficial for achieving diversity in participants and various perspectives on the research topic.

The data collection took place during the Covid-19 pandemic in 2021, at a grassroots disabled people’s organisation in Guangzhou that focuses on supporting the employment of young people with intellectual developmental disabilities. This organisation served as a gateway to access participants with diverse backgrounds and voices, which enhanced insight into the study topics.

Young people with intellectual and developmental disabilities and their parents were recruited from those who participated in the organisation’s employment training programme. The organisation supported the recruitment process by reaching out to all potentially eligible participants and obtaining their verbal consent to take part in the study. Young people with intellectual and developmental disabilities were eligible if they were: 1) aged between 16 to 26 years (the legal working age in China is 16) years and diagnosed with intellectual and developmental disabilities; 2) able to communicate in Mandarin or Cantonese verbally. Young people with intellectual and developmental disabilities were excluded if their language or cognitive impairments prevented them from completing the interviews. Parents of young people with intellectual and developmental disabilities were eligible if they lived with their child with intellectual and developmental disabilities. Thirteen young people with intellectual and developmental disabilities (hereafter, young participants) and their parents (11 mothers and two fathers) participated in the present study. Characteristics of the participants are shown in Table 1.

Table 1. Characteristics of young people with intellectual developmental disabilities and their parents.

Young people with intellectual developmental disabilities					Parents
Name	Gender	Age	Current job	Previous job	Relationship to young person
Hou	Male	21	Cleaner	Café staff	Father
Shao	Female	17	Unemployed	Cleaner	Mother
Wei	Male	26	Unemployed	Cleaner	Father
Zhan	Male	22	Bookstore staff	Restaurant staff	Mother
Wan	Female	22	Unemployed	Cleaner	Mother
Yong	Male	21	Office Clerk	Cleaner	Mother
Fei	Male	26	Unemployed	Tally Clerk	Mother
Long	Male	25	School Administrator	Warehouse Keeper	Mother
Yi	Male	25	Librarian	Cleaner	Mother
Jia	Female	16	Unemployed	Baker	Mother
Kai	Male	18	Unemployed	Restaurant staff	Mother
Liang	Male	19	Unemployed	Restaurant staff	Mother
Xiao	Female	22	Self-employed	Restaurant staff	Mother

N = no previous job experience.

Consent was received from all participants. A Participant Information Sheet and Consent Form were created in an accessible format and language suitable for the young participants, as informed by the pilot study discussed in the next section. Consent was obtained through an ongoing process, involving parents receiving and confirming young participants’ consent prior to the interviews, and the interviewer (the first author) seeking written consent before conducting the interviews. In some cases, the interviewer read each item on the consent form to the young participants, instructing them to provide their signature for consent.

Data collection

Due to the COVID-19 pandemic and associated restrictions in 2021, online interviews, rather than in person, were conducted. Ethics approval was obtained from the Research Ethics Committee of the University of Dundee, the UK. The approved application number is E2019-118.

Prior to data collection, pilot interviews were conducted with four young people with intellectual and developmental disabilities to refine the online data collection techniques, in addition to 13 young participants. The pilot interviews contributed to making adaptations to the Participant Information Sheet and Consent Form for young participants and introducing the photo-elicitation technique into data collection, as discussed below.

A semi-structured interview guideline was developed to collect information from young participants and their parents within the following areas: 1) disability, with a focus on disability identity, disability terminology, and expectations of the future lives of the young participants; 2) employment of the young participants, with a focus on willingness, expectations and existing barriers. Each interview was guided by the questions presented in Table 2. The young participants were encouraged to draw on their work-related photos provided by the organisation to aid in recalling experiences and eliciting more detailed descriptions and associated emotions. Probing questions related to images were used, such as ‘What is happening in the photo?’ ‘What are you doing?’ and ‘What makes you like/dislike this photo?’ Throughout this process, the first author remained flexible and sensitive to the young participants’ reactions to the photos and questions, ensuring that the young participants felt comfortable and that the data collected accurately reflected their perspectives and experiences.

Table 2. Semi-structured interview guidelines.

Young people	Parents
1. What types of jobs have you had before? How do you find those jobs?	1. How did you and your child feel about their working-related experience?
2. What kinds of jobs would you like to have and why? How about your parents?	2. Does your child express a desire to pursue employment? What specific types of jobs does your child aspire to, and do your preferences align?
3. Do you find it hard to obtain employment, and why? What are the primary difficulties?	3. What are your expectations regarding your child’s employment?
4. What are your expectations of life for the future?	4. What factors do you think might impact your child to find and keep a job?
5. Do you identify yourself as a disabled person?	5. What expectations do you have for your child and your family in the future?
6. Who are disabled people?	6. Do you identify your child as a disabled person and why?
7. Do you think you or disabled people are different from others? What are those differences, and how do you feel about them?	7. Do you think your child is different from others without intellectual and developmental disabilities? What are those differences?

The average duration of the interviews was 80 min, and they were held by the first author in the participants’ choice of language, either Mandarin or Cantonese. Microsoft Teams was used to conduct and record the interviews. The first author transcribed the interview data verbatim in Mandarin or Cantonese and anonymised the data using pseudonyms. The transcripts and analysis were conducted in the original languages to gain a deeper understanding of the participants’ words and expressions without losing the social and cultural connection.

Data analysis

The data were analysed following Braun and Clarke (2006) six-phase thematic analysis approach, supported by the use of NVivo software. The six phases of analysis begin with familiarisation with the data, achieved through transcription and repeated reading of the transcripts. Secondly, generating initial codes was accomplished using NVivo. Coding was informed by the researchers’ prior knowledge, including the study’s theoretical framework, research questions and objectives, themes from the literature review, and cultural values, linking data with theory (a deductive approach). Simultaneously, the coding was also driven by the raw data to uncover fresh views in the data and make unanticipated connections (Fereday and Muir-Cochrane 2006). The coding process was cyclical, involving interpreting the raw data, refining codes, and verifying them against a codebook that provided detailed labelling, definitions, criteria for use, and examples for each code (Guest, MacQueen, and Namey 2012).

After completing the coding, the next three steps (phases 3, 4, and 5) of analysis involved searching for, reviewing, and defining themes. Based on the coded data and the study’s focus, an initial set of four overarching themes were developed to link data to theory. These were perceptions of disability, understanding of disability terminology, attitudes towards employment, and approaches to employment. The researchers analysed and sorted different codes generated deductively and inductively to form subthemes. This process involved a back-and-forth method to ensure the consistency and accuracy of the codes, themes, and subthemes. As a result, the four overarching themes were combined into two: ‘Perceptions of Disabled Identity’ and ‘Attitudes and Approaches to Employment’. The codes and sub-themes generated inductively from the perceptions and attitudes of young participants and parents were combined accordingly to better demonstrate the mutual influences. The final step, phase 6, involved translating relevant participant statements and quoting them as illustrative texts to assist in presenting the findings. A bilingual researcher proficient in English and Mandarin/Cantonese reviewed and confirmed the translation for accuracy.

Findings

The findings are presented by combining the four overarching themes, perceptions of disability, understanding of disability terminology, attitudes towards employment, and approaches to employment, into two sections: perceptions of disability, and attitudes and approaches to employment.

Perceptions of disabled identity

Two subthemes were identified in the perceptions of disabled identity: embracing different perceptions of normal, and denying and struggling.

Embracing different perceptions of normal

Five young participants accepted and embraced a disabled identity. As Jia said, ‘I am a disabled person. I do not think it sounds bad’. However, some saw impairments as abnormal or causing abnormal behaviours and wanted to ‘redress’ those abnormalities.

Sometimes I am normal, and sometimes I am abnormal…My brain has problems, so I am not often focused when working and do not answer questions when being asked…I really want to control it, but I cannot. I am annoyed by that…[getting impatient and angry] (Wei).

In contrast, two participants did not see themselves or other disabled people as abnormal. For example, Xiao said: ‘I do not consider we are abnormal because we are all different…I would tell people my traits and characteristics so that they could understand me more’.

All thirteen parents accepted the disabled identity of their children (the young participants), with eleven of them excluding them from what they called ‘normal people’. They used ‘not normal’ or ‘abnormal’ to describe their children or acknowledged that their children were not comparable to ‘normal people’. While differentiating children from ‘normal people’, some parents wanted their children to catch up with non-disabled people. ‘I could not stop pushing [Kai] to do better to improve his grade, at least not fall too far behind’, said Kai’s mother. Although they themselves used the term ‘abnormal’, most parents opposed their children being called ‘abnormal’ and strongly believed that calling them ‘abnormal’ was discrimination.

Meanwhile, more parents realised that their children could never be ‘normal’ or ‘better’ or reach their previous expectations of being as capable as non-disabled people. They attributed this to the impairments of their children. For example, Yong’s mother said, ‘he had this problem. There is no way that we expect him to be as good as normal people’.

Two parents had a different way of seeing disability compared to other parents. Xiao’s mother stated that: ‘apart from her impairment, there are also barriers, such as people’s misunderstandings, that prevent her from properly using social resources’. Zhan’s mother considered that:

The barriers come from the social rules that are set by the public…For instance, it is not acceptable when [Zhan] was suddenly laughing on the underground…If [Zhan] did not need to comply with those norms, he was definitely fine with the way he was.

Denying and struggling

Four out of the thirteen young participants did not consider themselves disabled because they understood disability within the context of people with physical impairments. For example, ‘Of course, I am not a disabled person. I am nothing like those people without arms and legs’ (Liang). In addition, these young participants all expressed their dislike of disability as it ‘(did) not sound right’. Thus, they did not have positive perceptions and images of disabled people; that is, of people with physical impairments.

Since they did not acknowledge their own disabled identity, some did not understand the ways other people treated them, which made them unhappy or confused. For instance, ‘I do not know why they dislike hanging out with me…why they called me abnormal’ (Shao).

According to the parents of these young participants, one of the reasons for the denial of a disabled identity was the influence of the official disability terminology can ji that the character can means physically incomplete. So, some young participants insisted that disabled people are people with physical impairments, even though their parents had explained many times that disability had a wider definition. Another reason for the young participants denying a disability identity was that their parents had not yet told the young participants that they were disabled, due to the fear of ‘causing a lack of self-confidence’ (mothers of Shao and Yi).

In contrast to the denials, two young participants showed their struggle to accept a disabled identity. While Zhan acknowledged he was a disabled person, he didn’t understand why: ‘why do I have the disabled identification card? I do not think I am a disabled person’. Similarly, Kai appeared to not fully accept a disabled identity because he distinguished himself from other disabled people with severe impairments. Kai constantly talked about how he laughed at other disabled people to demonstrate that: ‘they are weaker than me’.

While all parents accepted their children’s disabled identity, some parents expressed their dislike of the official disability terminology, can ji, which represents the identity of their children. The parents saw that the meaning of the character can (incompleteness) ‘cause parents’ psychological discomfort’ (Wan’s mother), and the meaning of the character ji (illness) ‘always links to diseases’ and ‘makes [the public] focus on disabled people’s illnesses and sees them as a group of weak people’ (Zhan’s mother). Therefore, some of them preferred using obscure terms to refer to their children, such as ‘Children of the Stars’, than disabled people (Yi’s mother), and ‘changing the label on the uniform to a name that … (the public) could not identify our children as disabled people’ (Fei’s mother).

Attitudes and approaches to employment

Three subthemes were identified in the attitudes and approaches to employment: lack of employment awareness, building a family shelter, and variation in parental employment planning.

Lack of employment awareness

Most young participants lacked employment awareness – they had limited understanding, knowledge, and attention to employment-related matters. Some young participants showed their unwillingness to work. ‘I never say I want to work’. (Shao); ‘I like painting…not saying going to work’ (Fei). Some reckoned that obtaining employment was ‘not difficult’. For example, ‘I want to be a baker. It is not difficult at all’ (Jia); ‘I do not think it is difficult. I used to work in a hotel and a restaurant. Now I am working in my mom’s workshop’ (Xiao).

In contrast, only two young participants in this study, Hou and Zhan, were more aware of employment situations than other young participants. At the time of the interviews, they were both in placements and acknowledged that obtaining employment was ‘difficult’ and ‘not easy at all’. They understood that they could not become full-time employees if they did not perform well.

Parents build a family shelter

One common idea that every parent shared was that they would need to take care of the children for the rest of their lives: ‘caring’, ‘accompanying’ and ‘raising’. In particular, ‘raise’ is a direct translation from the Chinese term yang. Parents’ usage of term yang conveyed their idea of providing life-long financial support to look after their children in every aspect of their lives.

Thus, ten parents expressed that they cared little about how much their children could earn or that they did not see their children could be fully independent through employment. Meanwhile, some realised that these parenting ideas resulted in young people always relying on and turning to their parents for help. Consequently, young people were ‘not enthusiastic at work’ (Zhan’s mother) and considered that ‘there is no difference between having a job or not because he…knows I will give him money when he needs it’ (Yong’s mother).

Moreover, some parents did not consider that indulging their children, thereby resulting in their lack of employment awareness, was a problem. In the words of Long’s mother: ‘Everyone said it was my fault … if (Long) was an ordinary child, I would think his laid-back attitude might not be good. However, since (Long) is special, it is reasonable to slack off’.

Variation in parental employment planning

While all parents planned to provide lifelong parenting for their children, they had different ideas regarding their children’s employment. Some parents did not see the possibility of their children having employment, although they had once imagined it. For example, ‘I do not think she could have a job any more…she is incapable’ (Wan’s mother); ‘his father does not think anyone would hire [Fei]… I also think that [Fei] is not competent’ (Fei’s mother).

Some parents with employment expectations showed their confusion in looking for employment opportunities for their children. They had little information about disabled people’s current employment situations and potential employment opportunities. For example, Kai’s mother stated: ‘In fact, I have no idea what to do in the next step… Not only me, but many parents also had the same worries’. A common feature of these parents was that they did not proactively contact or join any disabled people’s organisations or parent groups. Parents explained that they did not see the necessity of having a connection with disabled people’s organisations or did not know of their existence.

Unlike those with no expectations or being confused, some parents had been proactively looking for or creating employment opportunities for their children. As a result, their children had more working experiences through their parents’ efforts and support than other young participants. Furthermore, some parents actively negotiated with employers to create job positions for their children and were willing to pay for their children’s salaries if their children could obtain a job position. Long’s mother said, ‘Only one school was happy with [Long] working there, and I paid his salary, but I was grateful enough’.

Meanwhile, among those who expected their children to obtain employment, most parents regarded their children’s employment as ‘living with dignity’. ‘I wanted him to have employment because he could live more meaningfully – we say obtaining employment to live with dignity’, said Yong’s mother. Similarly, Wei’s father said: ‘we do not have high expectations, but at least he has a job and can live with dignity’.

Discussion

The aim of this study was to explore how young people with intellectual and developmental disabilities and their parents perceive disability and approach employment in response to China’s ableist construction of disability. The findings reveal variations in how young people and their parents live with the ableist construction of disability. They also demonstrate how parents build a family shelter in the work lives of young people, with expectations for these young individuals to gain approved social status through employment.

Various ways of living with the ableist construction of disability

Internalised ableism of young people with intellectual and developmental disabilities

This study contributes to developing an understanding of how young people with intellectual and developmental disabilities in China understand themselves and their disabilities, extending Chen and Shu (2012) findings. Most young participants in this study exhibited internalised ableism, either adopting negative views of impairment or tolerating the existence of disability without full acceptance.

Some young participants did not acknowledge or had difficulty accepting their status as disabled individuals. They either deny a disabled identity or feel compelled to be called disabled because their understanding of disability was limited to physical disability, which differed from their self-perception. This led to ‘defensive othering’ (Campbell 2009), where they distance themselves from a disabled identity by comparing themselves to peers with more severe impairments or expressing their dislike towards disabled people. The young participants’ denial of a disabled identity and engagement in ‘defensive othering’ indicates they harboured a negative view of disability; and they internalise ableist practices to differentiate themselves from disabled people or people with physical impairments whom they perceive as lower in status.

Some young participants in this study show another way of living with the ableist construction of disability. They did not mind disclosing their disability identity but, at the same time, do not fully embrace their impairments as part of themselves. These young participants saw their impairments as problems preventing them from being acceptable and living up to expectations imposed by their surroundings. Thus, they try to ‘correct’ their perceived undesirable impairments, even though they struggle with demands to perform.

Young people’s ideas of ‘correcting’ their perceived undesirable impairments accord with the state’s publicity of disabled people’s spirit of self-improvement and success stories. For example, disabled people’s accomplishments are credited to their spirit of being ‘physically incomplete but strong in mind’ (Xinhuanet 2021), ‘constantly striving to become stronger’ (People’s Daily, 2022) as well as their ‘self-respect, self-confidence, self-reliance and self-improvement’ (China Central Television 2020). Indeed, studies on individuals with other impairments have shown that they actively respond to the inspiring messages that are being spread in society, showing images of moving upwards (China Central Television 2020; Dauncey 2013).

The information delivered by those success stories, however, is very ­different from stories that embrace impairment in that it shows how disabled people make achievements despite impairment. Disabled people are then encouraged to engage in moving upwards by having an aspiration and spirit of self-improvement, without taking into account the cost of the trajectory of fitting into the scope of the imagination of abledness. Thus, the more emphasis is placed on the spirit of self-improvement and success stories, the less attention is given to revealing the costs of living with ableism (Campbell 2009).

To sum up, the young participants’ denial of and struggle with a disabled identity, regarding impairments as undesirable, mirrors their recognition and acceptance of impairment as an abnormality and a devalued disability identity imposed by the ableist construction of disability in Chinese society.

Parents’ ambivalent responses

Most parents in this study showed ambivalent and conflicting responses to ableism. They did not completely passively and uncritically absorb negative representations of disability. Meanwhile, their conflicting responses dynamically jostle with internalised ableism as they cannot fully detach disability from its negative association, resulting in an ongoing state of ambivalence.

Parents’ conflicting responses to ableism are reflected in their ideas and usage of the disability terminology. Their conflicting responses to ableism are mirrored in the disagreement that official disability terminology was medically focused and emphasised the incompleteness of disabled people. Also, many parents disapproved of the official definition of disabled people that referred to them as abnormal. A similar finding occurs in Chu et al.’s study (2017), in which parents felt offended if others used the word abnormal to refer to their children with developmental disabilities. Meanwhile, many parents in this study showed their internalised ableism. In their narratives, the word abnormal was frequently used to describe their children, and to differentiate them from non-disabled people who were called normal people in the interviews.

Moreover, some parents showed their aspiration of abledness – expecting their children to be normal, non-disabled people. These parents wanted their children to be rid of their disability rather than incorporate disability into their identity. The apparent internalised ableism, as expressed by the parents in this study, is in accordance with previous studies, which focused on parents of younger children with intellectual and developmental disabilities and demonstrated the common use of the expressions of abnormal people and normal people (Guo 2016; Tait et al. 2016), and the desire of their children to be normal people (McCabe 2008).

It can be argued that the parents’ responses, mentioned above, disclose their approach of blaming the victim (Campbell 2009); in effect, blaming their children in the case of this study. Parents blamed their children’s impairments, rather than society, for deficiencies that caused undesirable disability status and disability-related negative experiences. Thus, as the parents absorbed the negative perception of disability that impairments caused disabled status, they used different strategies to avoid revealing their children’s disabled identity in public.

By drawing on findings from both sets of interviews with the young people and their parents, we can see that in some cases, the young participants’ rejection of a disabled identity relates to their parents’ hiding a disabled identity from them, believing their children can not handle the accompanying negativity. In other words, these young participants do not have opportunities to understand impairment or explore what it means to be disabled and the meaning of ‘disability’. Rather, they retain the negative image of disability associated with physical impairment and are prone to reject disability.

Counter-ableist understanding of disability

This study also demonstrates that alternative understandings of disability could be developed at the individual level in an ableist society. Some young participants and their parents had counter-ableist understandings of disability, instead of internalised ableism. They accept impairments as part of humanity and do not conflate identities into the ascription of a single disabled identity.

It is promising to see some parents developing their understanding of disability beyond a medical perspective and the homogenisation of disabled people into a single identity. Firstly, they are open to making changes to their knowledge and experience, which could initiate change in their practice. Secondly, as significant figures in their children’s lives and work, parents have a powerful role in nurturing and moulding their children’s understanding of disability and self-identity development, which was shown in one of the young participants’ perceptions of the disabled identity. The young participants in this study did not mind disclosing their disabled identity and were not ashamed of being disabled people. The participant repudiated the dominant value of normality and abnormality and was not imbued with a negative sense of self. Moreover, the young participants’ alternative understandings of disability demonstrate that individuals can develop a self-understanding of impairment and disability, and ignore and even reject identities with negative representations forced on them. Nevertheless, as the process of developing a self-understanding of impairment and disability is complex (Campbell 2009), it can be argued that internalised ableism coexists and competes with the counter-ableist understanding of disability. This dynamic requires further research to explore the nuances of responding to ableism among young people with intellectual and developmental disabilities in China.

Employment under a family shelter

This study identifies the idea of prolonged parenting among every parent, consistent with previous studies (Baker et al. 2020; Pan and Ye 2015; Zhao and Fu 2022). The findings of this study extend those of the previous studies to reveal that, with the idea of prolonged parenting, the parents built a ‘family shelter’ for their children’s work lives. The ‘family shelter’ emerges from the assumption that their children’s impairments result in external barriers and, thus, a lifelong dependence on the family, regardless of having employment. It cannot be denied that some parents’ actively searching for and creating opportunities contributes to the young participants gaining employment experiences under the family shelter. However, by drawing on the findings from interviews with young individuals and their parents, it becomes evident that, under such family shelter, most young participants, including those having counter-ableist understandings of disability, do not have a strong employment awareness to drive themselves to be more proactive when having a specific job they wanted.

Furthermore, under the family shelter, most parents do not expect their children to be independent through employment but consider that employment enabled their children to live with dignity. The concept held by parents that employment empowers their children to live with dignity is shaped by societal constructions and narratives about disability, reflecting the two-layered symbiotic relationship of ‘We-I’ (Campbell 2019).

The first layer of the symbiotic relationship exists between the young participants (‘I’) and the family context, where parenting is prolonged (‘We’). Parents view employment as a pathway to dignity, expecting their children to achieve independence in terms of gaining recognised social status as independent members of society, rather than being financially and emotionally independent (Zhao and Fu 2022). These expectations do not conflict with but rather coexist with the concept of prolonged parenting present in the findings of this study and previous research (Baker et al. 2020; Pan and Ye 2015; Zhao and Fu 2022).

The second layer of the ‘We-I’ symbiotic relationship is between the young participants (‘I’), and society and the nation (‘We’). In China, disabled people, perceived as partially or wholly lacking ability and marginalised from mainstream notions of abledness, are entitled to peopleship rights, albeit with the sense of extra help, resulting in unequal social status and rights enjoyment as other people considered fitting in the scope of the imagination of abledness. In this context, employment for young participants is seen as a means to affirm their self-worth (‘I’) and their value within society and the nation (‘We’). While young participants have employment rights, they are also expected to participate in social development (‘We’), challenging their perceived inferior status. This participation enables them to align with the Chinese concept of abledness, where individuals’ rights and interests are intertwined with their contributions to and participation in society and the nation (Lin, Levy, and Campbell 2024).

Limitations and future directions

Several limitations are identified in this study, primarily due to the impact of COVID-19, which necessitated adjustments from the original plans for face-to-face interviews and observations to alternative online interviews. Observations play a crucial role in building rapport with participants, allowing researchers to revisit research-related ideas, adjust interview questions, and better prepare for subsequent interviews. Despite the challenges presented by the absence of in-person observations in data collection, this study sought to navigate these challenges positively. It serves as an example of effective methods and procedures for conducting online interviews with individuals with developmental and intellectual disabilities and their parents. Moreover, this study focused on one urban area. Future research could explore the topic in various cities or regions, including both rural and urban settings, to enable comparisons and provide a comprehensive and diverse understanding of disability and attitudes towards employment across China.

Conclusions and implications

This paper adopts Studies in Ableism (SiA) to emphasise the importance of examining the socio-political, economic and cultural contexts in conceptualising a localised ableist construction and narrative of disability in China. It delves into the various and sometimes conflicting responses of individuals to ableism. Employing SiA to interpret China’s ableist constructions of disability, the study uncovers several findings: firstly, although the majority of young participants with intellectual and developmental disabilities harboured negative perceptions of disability, a subset embraced a positive viewpoint, representing alternative, affirmative ways of perceiving disability. Secondly, the analysis reveals how parents construct the family as a protective shelter, notably influencing young participants’ work lives. Thirdly, the study notes a significant lack of employment awareness among young participants within this protective family environment, contrasting with parental expectations for their children to attain an approved social status through employment.

In practice, the findings indicate a need to enhance the understanding of disability and awareness of disability employment among young individuals with intellectual and developmental disabilities and their parents. These findings can be used to support the grassroots disabled people’s organisation in implementing an intervention as part of their employment training programme. For instance, beyond offering skills-based training courses, the organisation could establish workshops to create a more supportive and knowledgeable environment for the families of individuals with intellectual and developmental disabilities to support their children’s future.

Disclosure statement

The authors report there are no competing interests to declare.