Disability and working-life citizenship

ABSTRACT

This article explores disabled people’s stories of their working life experiences from a narrative point of view. We claim that the idea of full-time paid employment is the basis of full citizenship (working-life citizenship) and is a dominant narrative that affects disability policy. This study is theoretically informed by the model of narrative circulation (MNC), according to which people construct their stories in relation to culturally available and hegemonic narratives. We analysed work-related plot structures in disabled persons’ life stories, which were included in the life-story data corpus ‘Life of Disabled Persons in Finland 2013–2014’. By looking at these life stories in relation to the culturally available narratives, this study identifies four story types for disabled people’s working-life citizenship: 1) working-life citizenship as a hero story, 2) the tragedy of working-life citizenship, 3) the comedy of working-life citizenship and 4) working-life citizenship as tragic irony. The findings suggest that while paid employment is considered a major source of inclusion, the stories of persons with disabilities are not always heroic stories in which hero status is achieved. Such stories often remain untold and unheard. However, they need to be told and heard for the conditions of inclusion to be understood.

KEYWORDS:

• Work
• narrative
• disability
• citizenship

Introduction

This study explores disabled people’s stories about their engagement in working life by analysing them as narratives and it is theoretically informed by the model of narrative circulation (MNC; Hänninen 2004). According to the MNC, people construct their life stories creatively in relation to the cultural stock of stories, which offers resources for individuals to interpret their lives and in relation to certain ‘conditions’, which include to both the material and discursive frames of living and telling (Hänninen 2004). Such a combination is useful in disability studies (Flynn 2017) because it acknowledges not only the material and discursive aspects of disability but also the individuals’ agency in relation to these conditions. In this study, we are interested in how disabled people construct their working-life story in relation to the culturally dominant story of paid work as the ideal.

Work is considered a major source of social inclusion, but people with disabilities worldwide face various structural barriers and discrimination in relation to it. Social inclusion in working life entails social and emotional as well as material and economic equality with non-disabled persons. Moreover, inclusion refers to both contributions to society through work and the experience of being part of working life. (See e.g. Barnes 2012; Fisher and Purcal 2017; Fiala 2018; Östlund and Johansson 2018; Mik-Meyer 2016a, 2016b; Pohjola and Tarvainen 2021.) The concept of ‘working-life citizenship’ captures the social and economic bond between individuals and society (Ekholm and Teittinen 2014, 19; Galer 2012). A roughly similar concept (‘citizenship-worker’) has been used in Nordic disability research (Nouf-Latif, Bertilsdotter-Rosqvist, and Markström 2019). The concept of working-life citizenship aims to reflect active labour market policy that emphasizes productivity through self-realization and personal choices (Nouf-Latif, Andersson, and Markström 2019; Teittinen 2015).

In accordance with the existing literature (e.g. Ekholm and Teittinen 2014; Nouf-Latif, Bertilsdotter-Rosqvist, and Markström 2019; Nouf-Latif, Andersson, and Markström 2019), we consider the prevailing culturally hegemonic story of paid work to be ‘working-life citizenship’. This concept refers to the idea, currently dominant in Finnish disability policy, that full citizenship is achieved largely through full-time paid employment (Ekholm and Teittinen 2014; Teittinen 2015; see also Blattner 2021; Hall and Wilton 2011). Being gainfully employed is thus considered a major source of societal inclusion in general (Östlund and Johansson 2018; Barnes 2012). Broadly defined, ‘citizenship’ refers not only to the legal status of the person but also to their actual inclusion as a full member of the society (e.g. Warming and Fahnøe 2017; Lister 2003; Waldschmidt and Sépulchre 2019). Anthony and Sutton (2014, 163), for instance, argue that disability is a ‘form of discrimination’ and a ‘denial of full citizenship’. The concept of ‘working-life citizenship’ links two key issues in disability studies, namely work and citizenship.

Our research questions are as follows: What kind of narratives about participating in working life do disabled persons recount in their life stories, and how do these stories relate to the idea of working-life citizenship?

Disability and working life from a narrative perspective

The starting point of our study is that an individual constructs their relationship to working life via available narrative resources (Hänninen 2004) – or more precisely the ‘meaning that an individual gives to working is framed by cultural expectations about working’ (Ezzy 2001, 2; see also Fiala 2018; Burch 2018; Nouf-Latif, Andersson, and Markström 2019). In addition to narratives about certain events and processes, such as losing a job, the cultural narrative resources also include more generic ‘master narratives’, which can guide the emplotment of various kinds of events (Lueg, Starbæk Bager, and Wolff Lundholt 2021). According to Northrop Frye (1967), a renowned analyst of literary narratives, the Western narrative culture tends to repeat certain key plots, namely romance (we prefer to call it the ‘hero story’), tragedy, comedy and irony. A hero story is a plot in which the protagonist faces challenges but is able to overcome them. Tragedies are about succumbing to those challenges and concern disaffiliation from society (Ezzy 2001, 51). Comedy is not necessarily a fun or entertaining story; rather it destabilizes social norms that are some ways too restrictive. And, finally, irony, or satire, concerns unexpected choices regarding society’s prevailing social norms and values. (Frye 1967.)

According to the MNC, people make sense of their experiences by constructing them as stories (Hänninen 2004). The circulation of narratives from individuals to their broader culture and back forms the basis of interpersonal understanding. However, disability tends to create a rupture in narrative circulation, as people with disabilities face difficulties in sharing their stories and having their stories recognized. This is because ableist disability narratives dominate (e.g. Campbell 2009; Coleman-Fountain and McLaughlin 2013; Meininger 2010; Flynn 2019; Tarvainen 2019). Ableism presents disability as unwanted bodily difference (Campbell 2009; Coleman-Fountain and McLaughlin 2013). Therefore, some people with disabilities may find that they cannot express themselves to a listener without formulating it in a way that is alien to them – that is, in ableist terms (Smith and Sparkes 2008; Tarvainen 2019).

Studies on disability and work-related exclusion have been enriched by new concepts, such as ‘othering’, which refers to seeing a person with disability as someone who does not fit into existing social norms (e.g. Campbell 2009; Norstedt 2019; Mik-Meyer 2016a, 2016b; Vedeler 2014; Tarvainen 2019) and ‘ableism’, which refers to discrimination and negative attitudes regarding disability (Campbell 2009; Mik-Meyer 2016a, 2016b). Ableism incorporates the idea of ‘able-bodiedness’, which understands disability as unwanted bodily difference (Campbell 2009; see also Mik-Meyer 2016b). Recent studies on disability and working life have uncovered prevailing norms and normative attitudes that pertain to ableism and othering and increase the exclusion of disabled persons from work (e.g. Mik-Meyer 2016a, 2016b; Burch 2018; Vedeler 2014; McLaughlin, Bell, and Stringer 2004; Harpur 2019).

The studies about the narratives of work among young adults with high functioning autism, for instance, show that a concept like ‘citizen-worker’, which grasps both citizenship and work, is useful for understanding the working life experiences of people with disabilities (Nouf-Latif, Bertilsdotter-Rosqvist, and Markström 2019; Nouf-Latif, Andersson, and Markström 2019). According to Antti Teittinen (2015), studies on disabled people’s relationships to working life in Finland are relatively sparse, despite the country’s strong tradition of working-life studies. Studies on actual working-life experiences of the disabled people are particularly needed (Teittinen 2015, 78), especially because ignorance can lead to discriminatory attitudes against disability (e.g. Teittinen 2015; Mik-Meyer 2016a; Ekholm and Teittinen 2014). The study contributes to these research needs by investigating disabled people’s relationships to work in Finland.

Method

Data collection

As part of the Narratives of Bodily Difference research project, this study uses the life-story data corpus ‘Life of Disabled Persons in Finland 2013–2014’, collected by the Archive Materials in Traditional and Contemporary Culture (‘the Archive’) of the Finnish Literature Society (SKS) and the Kynnys Association. SKS is a ‘learned society and non-governmental organization founded in 1831’, which among its other responsibilities ‘stores, preserves and studies Finnish culture’ and ‘conveys information about oral and written Finnish cultures and their study’ (SKS 2020). The Kynnys Association is a disability policy organization that promotes the human rights of people with disabilities. This collection of disability narratives is in the spirit of the United Nations (UN) Convention on Rights of Persons with Disabilities (CRPD), as it was the first collection of such a large scale in Finland (United Nations, Disability n.d.; see also Tarvainen 2019). The data corpus is archived in the Archive of SKS in Helsinki and is available for research use upon application. Access to the data is given upon the condition that the users commit to adhering to the norms of SKS.

The call for data was launched via different media and the progress of the project was outlined on the Kynnys website. The main question was rather general: ‘What is life like for people with disabilities in Finland’ (SKS 2013). The participants were not asked to specify their disability, age or gender; therefore, systematic and comprehensive information on the participants’ characteristics is not available. The collection focuses primarily on how people wanted to narrate their disability; it is not interested in diagnosis-based definitions or similar matters. Most of the participants were people with disabilities, but some were not. The latter were, for example, parents of children with disabilities, and some participants just narrated disability at a general level. Work was not a theme mentioned in the call for participation and participants could freely choose topics to explore. Work seems to be one of the most shared topics. In addition, many texts discuss disability in relation to identity (Pohjola and Tarvainen 2021) as well as disability and life course. Moreover, many texts provide information regarding accessibility or inaccessibility matters in contemporary everyday life.

Participants could either send their contribution by post or use a web-based platform (SKS 2013). They could also choose between writing out their answers or audio recording them. Potential participants were encouraged to use alternative communication methods or use an assistant if they found it difficult to write themselves. (SKS 2013.) However, according to SKS (2014), it seems that most participants chose to write without assistance. Although full demographical data were not requested, SKS (2014) was able to disclose that a typical participant was a middle-aged woman with physical disabilities. In addition, the texts reveal that the writers represented a large spectrum of people in terms of gender, age and type of disability.

The data corpus consists of 1797 pages in Finnish written by 37 participants. It is not known why exactly these 37 participants chose to respond to the call. The total number of pages is relatively large. The length of the life stories varies from approximately one or two pages to several dozen. Since the call was open, the contributions are (judging by the content of the stories) heterogenous in terms of age, gender and disabilities. For the purposes of the Narratives of Bodily Difference research project, the whole data set was transcribed from handwritten or typed form into an integrated Word format. The original texts are in Finnish.

As to the ethical aspects of the data collection, the SKS and the Kynnys Association provided the basis of informed consent in the call for participation. The purpose of the collection, as well as the data procedures, was presented in the call. Responding to the call by sending one´s story was considered as consent to participate. The confidentiality of the data set in our part was ensured by keeping if in a storage drive that the University of Eastern Finland provides for highly sensitive data. Throughout the study, we aimed to provide a channel through which disabled persons could get their voice heard, thus strengthening their ‘narrative citizenship’ (Baldwin 2008).

Analysis

For this analysis, only those texts that included some reporting of, or reflection on, the writer’s own working-life engagement as a person with disability were selected. Altogether, 23 life stories by 17 women and six men were included. The participants represented different ages, from relatively young adults to retired ones. However, as information on gender and age, as well as other background characteristics, was not collected, we are fully dependent on the information that the participants chose to provide. We reference the data with page numbers that are mentioned in the original data set (e.g. 1) and use pseudonyms.

According to the available information, most of the narrators seemed to have either physical or sensory disabilities. Disability type can affect the construction of a relationship to work; for example, people with invisible disabilities often encounter unexpected challenges because the ability to work is assessed in relation to visible disability (Norstedt 2019; Mik-Meyer 2016a, 2016b). However, according to Antti Teittinen (2015), different disabilities are not necessarily always specified in Finnish work policy because the policy is driven by a strong sense of equality. However, one can assume that the narrators may face challenges that are both specific to a certain type of disability and those that are more general to all people with disabilities.

The data analysis proceeded as follows. As we read the data, we noticed that many of the narrators pondered their relationship to work. Aware of the significance of work for inclusion, we decided to explore these work-focused accounts in greater depth. First, all accounts of work were combined as a file. After that, we read those primary accounts several times.

We observed certain recurring themes by which the participants seemed to make sense of their relationship to work. Thus, we explored the ‘plot’ or ‘inner logic’ inherent in the text by focusing on how the twists and turns of the writer´s relationship to work were constructed over time in their stories. We started the analysis inductively – that is, without a ready-made typology in mind – but it soon turned out that the stories could be classified according to Frye’s (1967) classic typology of plots or genres in Western culture. Our interpretation is that these generic story types influence the ways in which people narrate their own working life experiences.

Both researchers coded the data without computer software. As most of the primary accounts of work were relatively free-standing parts of the life stories, it seemed possible to focus on them in this specific study. However, we also paid attention to their textual context that is, the wider story of which they were a part. We organized the data (23 accounts) into four categories according to the emplotment of working-life citizenship. The criteria for classification were whether the status of being gainfully employed was attained (hero story), first attained then lost (tragic story), first aspired but then replaced by other meaningful activity (comedy) or held involuntarily (tragic irony).

Findings

We discerned four story types in the data. A hero story of working-life citizenship is about attaining the desired position of a working-life citizen; eight of the 23 accounts were related to this kind of narrative. In such stories, disability is discussed as a potentially hampering condition. A tragedy of working-life citizenship narrative presents a precarious affiliation to working life, as working-life citizenship is either lost or is never (fully) attained. This kind of plot was discernible in eight accounts. A comedy of working-life citizenship narrative is about a conflict between individual capabilities and social expectations of working life, which is overcome by seeking and finding an alternative to work-based citizenship. Three stories in the data set present this kind of alternative narrative. Four narrators depict working-life citizenship as tragic irony: they have attained this ideal but instead of being happy, they suffer in their work. Tragic ironies are about an abandonment of the normative goal of working-life citizenship. However, the stories cannot be seen as intentionally rebellious; instead, they reveal a struggle that forces the narrators to disengage from the social norm.

Working-life citizenship as a hero story

The hero story of working-life citizenship tells how the protagonist has conquered various obstacles in their finding work, mainly through their individual willpower. However, these stories reveal that for a person with a disability, gaining working-life citizenship is also a relational matter. When engaging in working life, people with disabilities encounter many other actors, such as rehabilitation or education professionals, who participate in the construction of the individual’s working-life citizenship. The narrators of the hero stories depict the relationship between themselves and the given conditions of work, as they highlight their individual strengths in the face of prejudice.

Richard, a middle-aged man, tells how he first received several rejections to his applications to vocational courses, but he finally succeeded and was allowed to continue his vocational studies. He notes that when he enrolled in his studies, he ‘was full of motivation and such autonomy that only an adult can hold’ and felt like ‘a responsible adult, whom other people trust’ (334). Richard’s story is one of ‘moving from sheltered work to independent paid work’ (331), in which sufficient education enables the protagonist to gain working-life citizenship.

Some narrators depict ableist prejudices in relation to disability. Peter, a middle-aged man with a visual disability, resists a pre-set category of a disabled working-life citizen and wants to follow his own ambitions. Peter tells that as the ‘rehabilitation course continued’, he realized that ‘people with visual disabilities were assumed to adopt a certain job … such as wickerwork’ (no page number). Peter writes that he liked that kind of work, but he ‘would not adapt himself’ to a job suggested to him by others just because he was a person with a visual disability (no page number). Instead, he started a firm that operates mainly in the information technology (IT) sector, which involves ‘computers, add-on devices and installs utility programs’ (no page number). Peter’s access to working-life citizenship was thus first guided by the ableist disability narrative, but he decided to resist it and was able to attain a professional goal of his own.

Maria, a relatively young woman with a visual disability, reflects on her relationship to work as follows:

I got through primary and secondary school as well as high school because I was so determined … After high school, I decided to study business and administration. I struggled to complete my studies. I graduated at the beginning of the recession in the 1990s. I became immediately unemployed. … [A bit later] I decided to fight again by using my ‘bad characteristics’ as resources! (537)

Maria contacted a special vocational college and applied for a course. She was accepted and started to study, wondering what kind of job she would apply for. She shared her thoughts with her mother:

[We] thought that the library would be good for me. … My supervisor during practical training thought the same way. I got an apprenticeship at the library. It was a miracle that [obtaining the apprenticeship] went so easily. Now I have held a steady job in the library for [several] years. OUR LIFE WILL NEVER WORK WITHOUT DETERMINATION! (537)

Maria’s story underlines her willpower and determination to achieve working-life citizenship by turning ‘”bad characteristics” into resources’ – that is to say, beating the challenges and attaining the desired goal. Maria’s story is a typical hero story in our data, as it does not explicitly discuss embodiment in relation to disability, but the body remains undiscussed. This might mean that either the narrator does not have a specific reason to write about the body, or the body is undiscussed because a disabled body is a taboo. A disabled body is easily interpreted against the prevailing norms of working-life citizenship, as the following stories illustrate.

The tragedy of working-life citizenship

The tragedy of working-life citizenship is apparent in the stories that begin with a desirable relationship to work but end in an undesirable situation. The narrators of tragic stories depict their relationship to work as lost or never (fully) attained. These stories reveal prejudices, such as ableist assumptions regarding disability. In tragedies of working-life citizenship, embodied individuals clash with their environment.

One of the narrators who shares such a story is Greta. She is a middle-aged woman with a physical disability. As Greta explains: ‘I always have to prove how good I am and what I can do. The employers always ask whether I need any assistive devices’. ‘In job interviews’ the interviewers ‘just stared’ at her physical appearance (498). She discloses how she has encountered prejudice in job interviews, which are important to access working-life citizenship. According to Greta, she has to prove her capability to perform the work, and other people pay special attention to her bodily appearance. She shares the following experience in an employment office in the 1990s, when Finland was in recession:

‘What are you doing here’, the officer … asked me. … I applied for a course, but I was not accepted. Again and again, I had to argue for my applications. Finally, they accepted me to participate in the course. … However, I did not find a training job easily. … The interviewer asked whether I could type with my short fingers. ‘I have excellent grades for typing on my certification; how good do I have to be?’ I answered quickly. (499)

The officer, who can be considered a gatekeeper for working-life citizenship, questions the narrator as a potential employee (‘what are you doing here?’). Thus, Greta has to try to prove her capabilities even though she holds excellent grades. Her access to work is threatened, and she has to continually show that she is capable of working. Furthermore, her capabilities are judged in accordance with ableist assumptions of the body.

Greta says ‘access to a working life is so difficult for people with disabilities’, and a ‘fixed job is a faraway dream’; she further states that this situation ‘niggles at my self-esteem’ (506) feelings that the other writers also share. She lists several courses and internships she has taken to achieve a broad competence as an office worker; however, she has never obtained an ordinary job. In her struggle between prejudices and her strong desire to secure a job, prejudices have won.

In the tragedies of working-life citizenship, full working-life citizenship is depicted as a desired but lost or unfulfilled goal. Tina, a middle-aged female with a visual disability, writes the following in poetic form: ‘I belonged to/my workplace/I was useful there/ which delighted me’ (284). However, her desire to work met challenges:

I had heard rumours that the company would put a new recording program into operation. … Yet, I incidentally heard that it would not be usable for a person with visual disabilities. I didn’t think it was real. … They just did not know how a blind person could work with assistive devices. When I did not hear a word about the plans of organising my work, I went to ask my boss. … I was shocked. … It was unbearable to be the only one who did not know. … The most painful issue regarding the job loss was the employer’s disrespectful attitude: I felt that I am useless rubbish/time after time/my cheeks are wet with tears. I am tired because I stay up all night, every night. However, I practice my hobbies every day, I try to take care of myself. This way, I try to make up for my lost job. (246, 286–287)

According to Tina, she was considered incapable of continuing her work with a new programme. Her capability to work was judged by ableist prejudices.

The comedy of working-life citizenship

The heart of a comedy is a conflict between an individual’s aims and the prevailing social norms. In the comedy stories of working-life citizenship, the protagonists find a way to circumvent these norms and, thereby, reach a situation that is better than the one that was originally pursued.

According to the narrators, people with disabilities face prejudices not only in the workplace but also among the work authorities. Laura, a middle-aged woman with a physical disability, shares her experience of visiting a career counsellor at an employment office when she was younger. Wanting to work, she told the career counsellor that ‘I have to find a study place. … whichever school is fine; I just want to go forward in my life’ (59). She enrolled in vocational studies, and after that, she started to look for a job: ‘I got a disability pension, but I never thought that I would not go to work … However, the employment office had nothing for me’ (65, 68). She applied for an internship, but she states that ‘my voice revealed that I am a person with disability’ (68). She continues: ‘I asserted that I am able to do this job. Nevertheless, they told me that they could not take any risks … After that, I had to think about how to go on’ (68). In this story, the turning point in relation to work is the interview, in which the narrator is excluded because of her disability. Laura continues that she has ‘a strong sense of justice’:

I think that every person has a right to fight for her rights. Justice is a principle of my life. I want to have an influence on things that concern my life … All people have to be equal in front of the law. Fortunately, discrimination against disability is prohibited by the constitution … However, people do not dare to make appeals even in the most obvious cases. (71)

From this point on, Laura’s story focuses on disability policy and highlights a rights-based approach in relation to different aspects of life, including work. In fact, Laura became an activist in a disability policy organization, which is her ‘way of working’ (71):

I found [my place in] a disability policy organisation when I moved to a [new town] … It was so nice to get together. We networked with disability policy organisations in other cities. I became enthusiastic about activating people with disabilities. ‘We have to work together for our interests, I proclaimed.’ (71–72)

Similarly, Tomas discusses his experience in which his access to working-life citizenship is denied. Although these two narrators, Tomas and Laura, live with different kind of disabilities and in different conditions, they share a similar experience in relation to working life. Tomas, a middle-aged male narrator, acquired a disability in his youth and received a disability pension because his impairments ‘were so serious that the professionals did not see that there could be any other future for’ him (529–531). Over his life, he has faced several confrontations with ‘rigid bureaucracy’ because his ‘applications to disability services were denied. According to the decision, Tomas was ‘not disabled enough’ (529–531). Therefore, Tomas faced a contradiction: while ‘the professionals did not see any other future’ for him than living with a disability pension, his applications were denied because he ‘was not disabled enough’.

Although Tomas studied extensively and finally established a family, he did not find a job. However, he continued to seek his place and describes the experience as an ‘unavoidable [change]’ that greatly affected him (529–531). This ‘unavoidable [change]’ highlights for him how inclusion is possible beyond traditional work-based inclusion: ‘Voluntary work [is my way]’ (529–531). He works for a disability policy organization and feels that ‘even though people with disabilities have difficulties being included in a society ruled by the able-bodied majority’, he has been ‘re-included in society’, except for in ‘rigid bureaucracy’ (531).

Working-life citizenship as tragic irony

Working-life citizenship as tragic irony reveals conditions in which the narrators abandon the idea of working-life citizenship as a desired goal. They disengage themselves from the prevailing social norm, working-life citizenship, which tends to be highlighted in prevailing disability policy and social norms. Such a situation may be challenging, but it is a lived condition for many people. It is important to notice that these stories of working-life citizenship as tragic irony do not challenge prevailing norms in an intentionally rebellious way; they rather disclose challenging conditions, in which the narrators give up working-life citizenship as a social norm.

In these stories, the conflict between ableist assumptions of the body and disability is one of the main points. People with invisible disabilities, for instance, may face different challenges in relation to work. One narrator with invisible disabilities, Lisa, has faced several prejudices related to her seemingly able body. Because her condition is not a visible part of her body, medical doctors ‘have not noticed’ how her disability may influence her ability to work in certain environments. She has met ‘unexpected challenges’, as she appears ‘so able-bodied’. She continues to explain: ‘Employers, for example, did not believe that such an able-bodied person would have sick leaves so often, although I brought my medical certificates to them. Yet my co-workers thought that I was just lazy’. (9, 17–18, 20–21.)

According to Lisa, others assess her capability to work based on her appearance and cannot believe she has a disability because she looks ‘so able-bodied’. Thus, she is considered ‘lazy’ and is seen as taking groundless absences from work. As she elaborates:

If I had known the consequences of my [invisible disability] and all the limitations [that it would bring], I would have been able, at least, to try to avoid the [unsuitable] working conditions. … I worked as a nanny and had a job in a bakery. … I did not know any limitations; I just went to jobs that were available for a person who has only limited education. Therefore, I worked in such unsuitable working conditions in cold, draughty and dusty conditions. (9, 17–18)

Because Lisa only has ‘limited education’, she has had to work in challenging conditions. In her story, the problematic relationship between the individual and work stems from a lack of knowledge regarding her disability and an ableist way of thinking that focuses on (visible) able-bodiedness. Such a standard of able-bodiedness also emerges in several stories about visible disabilities.

Amanda, a female narrator with physical disabilities, shares her experience of having to cope with contradictory decisions when different authorities, such as an insurance company and medical doctors, reached different decisions regarding her abilities: ‘According to them [an insurance company], I was able [to work], but a medical doctor thought that I was not’ (632). According to Amanda, she struggled with pain and tried to get her disability pension, but the process was neither easy nor quick and therefore she just tried to cope somehow: ‘They said that the pension is not available, though I have applied it twice’ (633–634).

Frida, a middle-aged female narrator, with an acquired disability, was not able to conclude her studies and thus she had to do cleaning work as well as work in a factory:

[An insurance company] should have had to offer me rehabilitation and re-education, not just leave me in conditions in which I was not able to work in my occupation due to the consequences of [the acquired disability] (316–317).

According to Frida, she was not able to complete her prior studies because of her acquired disability. She was not able to receive any new schooling and had to work in jobs that were available for a person with limited education. According to her, an insurance company ‘just left’ her in conditions in which she was neither able to continue her studies nor access additional education. Thus, she has had to settle for the available jobs, even though she found them challenging for her condition.

The narrators believe that the restrictions on their work ability caused by their disability were not fully recognized in relation to the given conditions of work; as a result, they have had to work in difficult conditions. All accounts are about becoming disabled in relation to the conditions of work that challenge their opportunities to grasp working-life citizenship. Here, disability relates to ableist assumptions of the body.

Discussion

This article explored disabled people’s stories of work from a narrative perspective. These stories about participating in work can be interpreted in relation to the available cultural story models. Most of the accounts in our data can be classified either as hero stories or tragedies. Such narratives may be the most typical way that affects how Western culture thinks about disability (e.g. Campbell 2009, 29–35; Oliver 1996).

The idea of working-life citizenship reflects the culturally hegemonic idea of paid work as a key to social inclusion. The hero story illustrates this idea, as it depicts getting a job as a personal victory over various barriers and obstacles. In a similar vein, Teittinen (2015) observed in his study on exclusion from working life among people with disabilities how these people try to prove their work ability by drawing on the story type of the individual hero, which emphasizes individual abilities but deemphasises structural conditions.

In contrast, the tragic story type highlights how that the victory depicted in the hero story may be unattainable or just provisional, as the position of a disabled person in working life is often insecure and precarious. The tragedy of working-life citizenship is not a tragedy of disability as such (see also e.g. Oliver 1996) but reflects the prevailing norms of able-bodiedness, against which people with disabilities have to prove themselves as competent, working citizens. As noted in the context of research on unemployment, being unable to attain working-life citizenship deconstructs the relationship between an individual and society by breaking ‘an imagined and idealised standard against which a person compares him or herself’, feeding a ‘sense that they [are] not needed by society’ (Ezzy 2001, 69).

The comedy story type presents a positive challenge to the idea of working-life citizenship by abandoning the ideal of full-time job in an ordinary labour market and endorsing inclusion through doing something socially valuable outside of gainful employment. The comedy is not a funny story; instead, it reveals work-related norms, such as able-bodiedness, that consider disability as an opposite to the able-bodied working-life citizen. The protagonists of this story type had tried in vain to get access to a working life but then decided, on the basis of opportunities provided by disability policy organizations to focus their activity on improving the conditions of disabled people. The narrators present disability policy activism as a vital means for inclusion and change regarding ableist assumptions. The comedy of working-life citizenship provides active and productive responses to the structural and attitudinal barriers that disabled persons face. In accordance with comedies in general (e.g. Frye 1967), those in our data are about a clash between the prevailing social norms and individuals, which the individuals solve in a productive way. It has to be borne in mind, however, that while unpaid but meaningful work may offer an alternative route to inclusion, it does not offer, like paid work, material independence and a recognized position in society (Galer 2012; see also Fiala 2018; Hall and Wilton 2011).

The ironic story type, meanwhile, emphasizes that being gainfully employed – or working in a certain job that is available – is sometimes too hard for a disabled person and that this fact should be acknowledged. Working-life citizenship as tragic irony presents a conflict between the prevailing norm of being gainfully employed and the conditions of fulfiling this norm. The narrators decided to abandon working-life citizenship because the work they could get was too hard for them. The tragic ironies of working-life citizenship reveal how people with disabilities see work-based inclusion as a major source of accessing social inclusion and how hard it can be to give up even when the conditions are unbearable. Invisible disability, for instance, is one example of how work capabilities were considered in relation to the visible body: people with invisible disabilities met challenges because other people considered disability on the basis of visible able-bodiedness (see also Norstedt 2019). Moreover, working-life citizenship as tragic irony reveals situations in which conditions of work were inappropriate but access to (disability) pension was also inaccessible (see also Aarseth et al. 2017).

In sum, the story types found in our study reflect different relations to the idea of working-life citizenship. In the hero story, the working life citizenship is attained (though not easily); in the tragic story, the working-life citizenship is pursued but not attained, and the loss was regretted; in comedy, the futile attempts to attain working life citizenship are replaced by finding meaningful activity outside gainful employment, and in tragic irony stories, the protagonist was willing to abandon working life citizenship they had attained due to the existing conditions that have made working unbearable for them (see also Blattner 2021). From a disability rights perspective, participation in working life through the status of in/voluntary employment needs to be further investigated, for example, the status of voluntary work in relation to full inclusion as well as involuntary work among people with disabilities. Moreover, the status of in/voluntary work is crucial for the construction of identity in conditions where work is the major source of inclusion. (Blattner 2021; Pohjola and Tarvainen 2021.)

In the background of the relationship between disabled persons and working life are ableist norms (expectations of able-bodiedness) (see also e.g. Mik-Meyer 2016a, 2016b). When a person is considered not fully able-bodied, their opportunities to gain citizenship through full-time working life are limited. In the story types we found, ableism can be seen in the difficulty of getting a paid job (hero story, comedy), in loss of job due to disability although the disability did not make the person incapable for the job (tragic story), and in not acknowledging the special needs of the disabled person (tragic irony). As long as working-life citizenship is based on ableist expectations that employees be what is considered fully able-bodied, the goal of inclusion of disabled persons in society through participation in work is not fully attainable.

Our study has some limitations that should be taken into account. Although our material is valuable, since it highlights the experiences of a wide variety of disabled persons in their own words, it could be better if it included a larger sample of people and if the demographics of the writers were known to us. A data set focusing only on working-life experiences would be still better suited for our purposes. Another limitation concerns the data collection method, which might have attracted narratives principally from people who had the narrative resources to share their stories. Although the organizers encouraged participants to use different means of communication and obtain assistance as required (SKS 2013), most narrators seem to have written their responses by themselves and sent their text either by post or through the web-based platform. Alternative data-collection methods should be developed to access the experiences of people who are not able participate in this kind of data collection. However, this collection of disability narratives was the first of such a large scale in Finland; it enabled many people with disabilities to participate in collective storytelling and have their stories be heard.

This article has focused on persons with physical disabilities. It is evident, however, that people who differ in other ways from the implicit or explicit expectations regarding an ideal or expected ‘normal’ employee can face similar problems (see also Mik-Meyer 2016a, 2016b). Moreover, disability may be one of the intersectional factors that affects a person’s relationship to working-life citizenship. Further studies may consider, for example, the intersectionality of disability and age or gender in relation to stories of working-life citizenship.

Conclusion

This study has shed light on the working-life experiences of people with disabilities through their written stories. Among these stories, the hero story is in line with the hegemonic idea of working-life citizenship or the idea that full citizenship can be achieved through gainful employment. Conversely, the other story types feature alternative views on the possibility of attaining citizenship in this way. These alternative stories often remain unheard; however, the experiences of people with disabilities regarding working-life citizenship and work-based inclusion need to be heard in order to inform disability policy and make the right to work a reality for all. Our main conclusion is that the idea of working-life citizenship may lead to the construction of a social norm that may be difficult to attain due to the existing conditions and negative attitudes against disability in working life. The paradox is that the attainment of working-life citizenship, that is, inclusion in working life, is considered a major source of inclusion in general; however, full working-life citizenship is often out of reach for people with disabilities under prevailing social conditions. The written stories examined in this study suggest that the idea of working-life citizenship needs to be critically examined as the basis of disability policy in relation to dominant social conditions. Moreover, people with disabilities and those working with them could benefit from realizing that ordinary forms of employment might not be the only means to inclusion in society.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Academy of Finland (Grant number 299172).