Socially constructed 'value' and vocational experiences following neurological injury.

PURPOSE: Paid work is seen as a key outcome in rehabilitation. However, research demonstrates that because of normative expectations in the job market and workplace, experiences of disability can be intensified in a work context. We sought to explore this issue in more depth by analysing the effects of societal constructions of worker 'value' within individual case studies of people with acquired neurological injury.
METHOD: Instrumental case study of four heterogeneous participants, employing a discourse analysis approach.
RESULTS: Participants described a perpetuation of discourses in which a disabled body or mind itself is seen to qualify, disqualify or limit a person's value in employment. Nevertheless, interviews also highlighted discourses that constructed other worker identities: based on pre-injury identities, life experiences and other aspects of self. The contrasts between individuals illustrated how worker identities, when situated within broader societal discourses of worker 'value', can either constrain or expand the vocational opportunities available to individuals who experience disability. However, current and historical interactions about worker 'value' shaped the identities genuinely available to each individual.
CONCLUSION: Understanding how societal discourses enable and constrain worker identities may be vital to (a) facilitating valid opportunities and (b) navigating situations that could unintentionally hinder vocational possibilities. Implications for Rehabilitation This study shows how worker identities, situated within societal discourses of worker 'value', can constrain or broaden vocational opportunities available to individuals who experience disability. Barriers to gaining, maintaining and developing in employment could be re-envisaged in terms of what is limiting a person's ability to embody an enabling identity. A knowledge of both societal discourses and individuals' interactions with them may be vital to facilitating opportunities that users of rehabilitation services experience as valid options. This knowledge can also provide information with which to navigate situations that could potentially (sometimes unintentionally) constrain vocational possibilities.

Introduction

Acquired disability and paid work

The primacy of work as an adult occupation in many current societies is often taken for granted, and in health practices we rarely seek to question the effects of this social construction – positive or negative. The practices of rehabilitation (and more specifically vocational rehabilitation) for people who experience an injury that significantly affects their functioning, operate on an assumption that participation in paid work will be a good outcome for people who are accessing services, as this is often seen by both service providers and their clients as a situation that will likely reduce the experience of disability. Indeed, studies have indicated that being employed is important for health and wellbeing for many people (e.g. see [1]). However, sociological and health research in the area of disability has indicated that the experience of disability often persists and can even be intensified in the context of work – both because of difficulties in fitting (actual and perceived) abilities with available and desired work (e.g. [2-5]), and an expectation that to work is ‘normal’ (e.g. [6,7]). Thus, it seems pertinent to examine the social construction of these disabling experiences.

Galvin [7] described a comprehensive grounded theory study about the identity-related experiences of people with acquired impairments living in Australia and New Zealand. Her findings highlight what she describes as ‘the imperative of paid employment’ (p. 403), in which people found themselves wondering who they are now that they are ‘no longer defined by my occupation’ (p. 403–404). People chose to work when it was severely detrimental to their health and wellbeing because of the strong association with social contribution and positive identity. If they were unable to work, they experienced intense grief for their previous (working) identity. This study highlights the societal discourses that create an intensification of the disabled experience when someone is less able or unable to do a paid job compared to a previous ‘self’ – to the extent that for some, work was an enormous burden, but additionally, ‘life without work was unthinkable’ (p. 404). While these experiences are also likely to be present among individuals who have experienced disability since childhood (particularly the pervasive notion that being in paid work is ‘evidence’ that an individual is a competent and valued member of society, e.g. see [6]), Galvin’s study suggests that there may be characteristic aspects for people whose disabled experience began during their adult life.

Disability and work disability as social constructs

Thinking in the area of disability studies has increasingly utilised post-modern and post-structural theories to argue that, although pervasive, the idea of disability is something that is socially constructed – inscribed in the ways of thinking and doing that dominate in a particular society (e.g. see [8,9]). Deploying Pierre Bourdieu’s work, an article by Edwards and Imrie [10] gives an analysis showing social inequities experienced by disabled people in a work context as produced by the valuations that systems of signification and representation in society attribute to the corporeal forms of the disabled body. They argue that negative experiences disabled people describe in relation to trying to obtain and maintain employment can be analysed in terms of Bourdieu’s notions of ‘social capital’ and ‘habitus’, and show how the disabled body displays ways of talking and acting that deviate from the usual embodied forms, evoking (often unconscious) social attitudes that disadvantage a person in an employment situation, quite apart from their ability to do the job.[10] In addition to the disadvantage associated with experiencing disability generally as described by Edwards and Imrie, people described as ‘work disabled’ tend to be people who essentially lack access to work that matches their abilities, and thus experience an absence of the opportunity to participate as others do in this aspect of ‘normal’ and expected adult life.[11]

Following on from Edwards and Imrie’s analysis, Fadyl et al.[11] undertook a study that used Foucauldian discourse analysis to explore discourses of employee and worker ‘value’ that are identifiable in texts that describe, justify or critique recent and current practices of vocational rehabilitation in New Zealand. Our analysis focussed on a discussion of actions and practices these discourses make possible, and also ways in which they limit thought and action. The key discourses can be described briefly as: (1) that being employed is a demonstration that a person is valued as a worker and (2) that the ‘self’ a person brings to a workplace is both produced and expressed in their work – part of their contribution and qualification for the job. These discourses are supported by notions of worker and employee value that form part of neoliberal thought – in particular the idea that ‘human capital’ is something developed and nurtured by every person and that this translates into ‘employability’ in a job market – an important concept in contemporary societies.[12] We showed how these discourses allow certain approaches to current vocational rehabilitation to be dominant – such as addressing ‘barriers to work’, but also that the discourses are not always deployed in the same way, and there are other approaches that fit with current thought, and are present in more marginal practices.[11] This discourse analysis led to a need to further explore these ideas of what constitutes ‘value’ in a worker or employee, and in particular how these ideas play out in different contexts at a more individual level.

Foucault on discourse, subjectivity, and technologies of self

The work of Michel Foucault – particularly his lectures on bio-politics – is utilised in this article to present the analysis of the case studies. As such, we give a short introduction here to key concepts from Foucault’s thought that frame our analysis.

Discourse

Discourse in Foucault’s work is a term used to describe socially constructed patterns in ways of thinking and acting that are seen to both represent and re/produce what people experience as reality.[13] ‘Texts’ such as written and spoken words, images, objects and layout of spaces provide instances of discourse which also refer to larger practices, actions, structures, social conditions or other products of discourse (often referred to as extra-discursive [14]). Consideration of ‘texts’ from this perspective enables analysis to identify discursive constructions, and consider how discourse produces and is produced by our current ‘truths’, and how subject positions such as identities, roles and selves are constructed and acted upon.[14-16]

Subjectivity

Foucault’s notion of discourse has significant implications when it comes to how we view people. From this perspective, the subject positions we identify with – employee, disabled person, artist, author and so on, are all constituted by discourse. The understanding of ourselves as a type of person (e.g. a disabled person or artist) or even as a person is made possible in discourse. Furthermore, the thoughts, words and actions that can be articulated or played out with respect to any given subject position are limited by discourse.[13] The key implication for the study described in this article is that the field of possible action for the participants is shaped and constrained by the subject positions that they occupy (e.g. disabled person and employee), which are in turn constructed in society. Thus, any change in the possibilities for the individual simultaneously represents a change in the society – and discourse – of which they are part. For this reason, we have avoided associating participants’ descriptions of their experiences and interactions about worker ‘value’ with individual personality or nature, since in a Foucauldian sense, these too are socially constructed, and cannot be used to explain other, concurrently constructed phenomena.

Technologies of self

In Foucault’s later writing, he focussed more on the ‘subject’ (see above) and the techniques/technologies that people use to maintain their thinking and actions in accordance with their identities, values and ethics (which they may or may not be explicitly aware of). He was particularly interested in this because of its importance in bio-political government – a mode of governing that emerged in the latter half of the eighteenth century in Europe that is evaluated at the level of the population, but functions through a structuring of the choices and actions of individuals (see [17]). ‘Technologies of self’, therefore, are important to how individuals constrain their thoughts and actions in socially acceptable ways, and are involved in the maintenance of societal norms.[18]

In accordance with a Foucauldian approach, we have viewed ‘value’ as a concept that is in flux, being continuously re-constructed and having effects within a social context. Inverted commas are used in references to this concept – as the study explores constructions of ‘value’ and their various effects. The inquiry described in the current article is an analysis of how socially constructed ways of understanding and acting on employee/worker ‘value’ are experienced at the level of ‘disabled’ individuals, and the ways in which these broad discourses construct and intersect with the subjectivities available to people in a work context – in turn structuring the available identities for those people. The purpose of the study was to use a small number of heterogeneous individual examples to investigate how discursive constructs relating to ‘value’ in an employment context manifest for a particular person in their unique situation. In this way, we hoped to develop a better understanding of how these discourses can construct the experience (or not) of acquired work disability.

Study design

A collective instrumental case study design using four heterogeneous participants was chosen for the inquiry.[19] The inclusion criteria for participants were that they had experienced an acquired brain or spinal cord injury since the age of 16 years, they lived in one of the three main urban centres in New Zealand (where the range of possible work is greatest), and were able to take part in an interview with a researcher (with support or assistance if required). Recruitment of participants was done through advocacy services and rehabilitation networks. The approaches were done one at a time, and each participant approach followed a discussion with recruiting organisations about strategies for maximising diversity in background and experience among the people chosen (purposive sampling). Variation among participants in age at the time of the injury, work experience, type of disability experienced, cultural background, work type and education was sought. A description of each participant is given in the ‘Findings’ section. The participants each chose a pseudonym, and other identifying information in the descriptions and in quotes has been generalised only to the extent that was necessary to enable confidentiality.

Beginning in 2010, each participant took part in a broad initial interview exploring their experiences of considering paid work and vocational rehabilitation following their injury. After conducting a sociological analysis of practices of vocational rehabilitation and identifying a need for a more focussed follow-up based on the concept of worker ‘value’, all the participants were invited to participate in a second interview. The second interview included some exploration what had happened since the previous interview but was mainly focussed on delving more specifically into personal and social interactions around what constituted worker ‘value’ in their experiences. The approach was to discuss participants’ analysis of situations in which they did or did not feel valued as actual or potential employees or workers, and the questions asked were informed by what they had communicated in their previous interview combined with the questions raised from a sociological analysis of how the concept of ‘value’ is constructed in vocational rehabilitation practices (described in the introduction section [11]). Three of the four participants were able to be contacted again and consented to a second interview. One of the original participants was unable to be contacted for a second interview. All four participants gave consent for their interviews to be analysed and compared for the purposes of the study.

We employed Foucauldian discourse analysis focussing on Foucault’s discussion of ‘technologies of self’ (introduced in the previous section), and applying the methodological principles and theory drawing on Foucault’s methodological writing as for a previous study, discussed in a recent methodological article.[15] In the context of analysing individual case studies, this involved reviewing recordings and transcripts to identify discursive constructs that were produced in the discussions (e.g. ideas such as skills or expertise and subject positions such as consultant, trainee or unemployed person) and exploring how they related to other constructs and the sorts of actions they make possible for the individual. JF complied overview summaries of anonymised interview content, and coded detailed sections of interviews according to topic and ideas discussed. At this stage, J.F. and D.P. conducted an initial discursive analysis to identify the various narratives present in the interviews that relate to ‘value’ in the context of work and employment, and the discursive constructions that enable them. Both authors then examined these discursive constructions to identify the actions they make possible for individuals, and also the ways in which they act to constrain individual actions. Finally, the results of the analysis was considered in terms of the insight it adds or the aspects it illustrates and animates in broader analysis relating to how employment market ‘value’ is understood in New Zealand society and how this structures the field of actions for people who have experienced a disabling injury.

The study design was given ethical approval through the appropriate University ethics committee. It was also presented to and discussed with a local ‘end user consultation committee’ made up of people who experience disability resulting from neurological injury, who were enthusiastically supportive of the approach and goals of the study.

Findings

Participants and interviews

The four participants lived in urban New Zealand: one in Auckland, two in Wellington, and one in Christchurch. Two of the participants identified ethnically as New Zealand European, one as NZ/North American European, and one as Pasifika. Their formal qualifications ranged from none to postgraduate level. They were heterogeneous in their backgrounds and experiences, as illustrated in the following introductions. Two participants had experienced a brain injury and three a spinal cord injury. Since the focus in this article is on disability as a social construction, we do not give specific medical diagnoses or a list of impairments, but describe the effects of injury in the context of the participant’s life.

Eva

Eva was injured as a teenager, and was interviewed approximately 15 years after her injury. She uses a wheelchair to mobilise and depicts the role this plays in her life as often an unsolicited display of difference between herself and others. She is highly qualified and capable in a creative field but had significant difficulty finding work due to her ‘disabled’ image. Eva eventually found work through an employment scheme, but at the time of the interviews struggled to convince herself that she is as valuable as her qualifications and skills suggest, as her experiences had communicated otherwise.

Sophia

Sophia was injured in her late 30s, and at the time of the first interview it was approximately 2 years after her injury. She had significant work history in human resources consulting, was highly experienced and had proven capability in this field. Her difficulty with speech production is the main conspicuous effect of her injury. Sophia experienced initial difficulty convincing employers of her value, but later had success in gaining retail and sales representative work despite her speech impairment. Sophia was convinced of her capability throughout her experiences seeking work, even in the face of some very demoralising experiences (a lengthy process – nearly 2 years).

MCS

MCS was in his late 40s at the time of his injury, and had considerable work history in social work and more recently customer services management. In his early 50s at the time of the interviews, he uses a wheelchair to mobilise and requires assistance with personal care tasks, which serve to classify him as ‘disabled’ – with both positive and negative effects. At the time of the second interview, MCS was employed full-time in social-work and social entrepreneurship. MCS totally changed the direction and focus of his career following his injury, and had key mentors in this process who helped convince him of his value to society, which is now reinforced daily in the contribution through his work.

Paul

Paul was injured in his mid-20s, 15 years prior to our interview, and following his injury, suffered severe depression for several years. Aside from the depression, the main ongoing effect of his injury on his life was linked to mobility difficulties, and he had been unable to get any work since. Paul previously worked in a kitchen, but was unable to do the hours/tasks following his injury. He retrained in a sedentary occupation that he had a passion for, and at the time of the interview was hopeful, but so far unsuccessful, in gaining work. At the time of the interview, Paul still spent a huge proportion of his time trying to make ends meet and maintain his income. He felt written-off by the people he dealt with at the organisation who fund accident rehabilitation and wage compensation (who also happened to be the people he had most contact with).

Eva, Sophia and MCS each participated in two interviews, and Paul in the first interview only, as he was unable to be contacted during the follow-up period. Sophia utilised communication support from her husband for her first interview, and all other interviews were with the participant alone. Each of the interviews lasted between one and a half and two hours, and they were audio-recorded and transcribed verbatim. Both the transcript and the recordings were used to provide material for analysis, with transcripts enabling detailed exploration of the words used and construction of narrative, and recordings allowing analysis to include the emotional content of the interaction.

Discourses of worker/employee value

Three thematic categories of discursive construction in relation to worker or employee value were identified in the case study analysis. These were:

The idea that it is the employment market rather than the individual that has real power in determining the ‘value’ of the person as a potential worker/employee.

The idea that each individual is engaged in the project of making themselves valuable in a way that makes them desirable as employees or workers – the production of ‘selves’ that are ‘employable’.

The idea that ‘disability’ modifies worker value and employability, and the ways in which this can occur.

This list could be read as a summary of a neo-liberal employment climate, and indeed, these three categories were consistently reinforced in the description of experiences given by the four participants. However, the contrast between the ways in which these constructions manifested in the experiences described by the individual participants captures important insights and lessons for the ways in which (vocational) rehabilitation is carried out. Different subject positions within these discourses were available to the various participants, which in turn structured the field of possible actions available to themselves and others. These contrasts and an analysis of them in relation to currently dominant wider discourses are described in the sections that follow. First, we will broadly introduce the ways in which these three discursive themes became visible in the discussions, and in the following section we look in detail at the similarities and contrasts between the effects of discourses within individual trajectories.

The definition of ‘value’ existing in the employment market

The experiences described by the participants emphasised a discursive construction of the employment ‘market’ acting as a measure of the value of a person as a worker – in particular, that ‘employed’ status and the type of job served as evidence of the value of a person as a worker – and often, by extension, as a citizen (see [11]). However, there were key differences in the underlying subjective constructions of the behaviours of individual (disabled) actors in this ‘market’. These differences revealed a variety of subject positions available to people who experience disability, and a field of possible actions each of these subject positions made visible and possible.

The individual task of producing an ‘employable’ self

Each participant recounted interactions in which they felt that they had to show the qualities of a desired worker or employee. The subjectivity of the ‘employable’ individual had in a number of aspects: from appropriate, presentable appearance to demonstration of attributes that would allow the individual to stand out as skilful and useful within the particular work role. There was little question that the task of producing in them-selves (and then demonstrating to an employer) a desirable employee was expected of them. However, there were key differences in the ways in which individual participants experienced the impaired or disabled body/mind as an aspect of their ‘worker’ self, and thus the ways in which this became a qualification, disqualification or limitation of value in considering their employability.

Variations on the disabled subject position and its role in employability and worker value

Different values and qualities attached to the experience and appearance of disability moderated the ways in which disability featured in the person’s ‘worker’ self and the possible actions available to them as a result. This was the case both in terms of presenting themselves as potential employees, and the assessment of successes and challenges within a job (or job interview) by them and others. Consistently communicated in the accounts was the idea that disability in some way modified the ‘value’ of the potential or actual worker/employee. However, the significance and direction of this modification differed between participant experiences. At one extreme, it was a source of pride that the disabled experience was a qualification for a job that was seen to be desperately needed in society. At another extreme, the appearance of disability was concealed wherever possible to avoid a negative modification of the assessment of competence. In some descriptions, the disabled subjectivity was seen to be an extremely significant aspect of the assessment of competence and ‘value’, while in others, disability was barely part of the worker subjectivity; something to be acknowledged and moved past.

Construction of available positions, identities and possibilities for action

Qualification, disqualification or limitation of value associated with the impaired body

Highlighted in discussions with each participant were experiences of the ‘impaired’ or ‘disabled’ body and/or mind as being a modifier of their ‘value’ as an actual or potential employee or worker – contributing to qualification, limitation of value or disqualification in this role. MCS’s account foregrounded his pathway into a job that valued his experiences of disability as a qualification for the role – something that he found both welcome and somewhat unexpected. He was approached by the employer to ask if he would consider taking the role:

JF: So [the employer] head hunted you for this position?

MCS: Yeah, and it’s not in disability, it’s mainstream aye.

MCS found that having work boosted his confidence in his value as a member of society: he saw work as showing he was able, but also his disability specifically was valued in terms of being part of his qualification for employment, thus it was not experienced as something to be anxious or ashamed about, as for Eva (see later in this section).

MCS: The fact that I was working made me feel like more of a human being, I don’t like to make it sound like others who aren’t are not, but that’s how it felt for me at the time. I felt more kind of like an able bodied person. [The workplace modification] kind of feels very good too even though you feel kind of weird that people are looking at you because you’re getting all this equipment because of your disability.

Importantly for MCS, a discourse that constructs disabled people as vulnerable to exploitation (typically producing negative experiences), allowed him to take up a subject position of defender and advocate. This subject position was available to him as someone seen to be knowledgeable about the experience of disability but also able to communicate in a manner that seems logical and reasonable to with those who do not experience the stigma of disability.[20]

MCS: I find [poor quality care] really oppresses our people, disabled people, so I thought ‘no, I know I can make a change’. I just started taking one committee at a time and then slowly building up and getting involved in health board stuff and city council stuff, local authority. And then I slowly started to see other people in the sector and then they started approaching me to be involved in other committees.

In contrast, Eva’s account stressed some much more negative experiences in terms of the implications of her appearance and experience of disability for her job role. Eva expressed a lot of unwillingness to seek opportunities or take chances in her employment situation because of an understanding that because of her disabled body, the job market did not value her skills and expertise as much as a professional peer (or even someone less skilled or qualified). Eva talked about feeling simultaneously over-qualified and disqualified in her employment situation:

Eva: A lot of the people that we have hired haven’t been as qualified as me and they haven’t been as good. They will get jobs that I think I could do much better and I’m sort of like ‘why are people going to them when they could come to me and get a much better job?’ They [a peer who left the workplace] look at me and go ‘Eva you could be doing something so much better than this and they treat you like crap there and you don’t get paid very much’ and stuff. But then in my head I’m like, well you can’t make that judgment call. They have got a much better job now, but I would probably never be hired because I know that if I went for an interview the first thing that someone would see is the fact that I have a broken neck.

Eva’s statement about what might happen to her if she decided to look for a different job is based on previous experience, in which she strived ‘a good ten years after I finished my [qualification] before I could actually get a job and that was through basically a friend who got me onto a programme’, which she found humiliating because ‘I had to have a programme to get me into a job’. In addition to this, her interactions with other people over the years have reinforced this experience, combining a view that being unemployed or on a benefit is bad, a burden on society and something to be ashamed of, with encounters of the idea that is it not normal for disabled people to work:

Eva: [recalling a phone interview] I always remember this one woman. She was having a massive rant, she said ‘I can’t believe [insurer] think that people such as myself [with an ankle injury] can work fulltime. It’s just not possible.’ She was going on about it and then she said ‘and what really makes me angry is they think people in wheelchairs should work fulltime. They can’t work at all.’ I was just sitting on the end of the phone, in my chair going ‘oh of course’ you know because we had to.

Although these views and experiences motivated Eva to work – to ‘show them otherwise’, they also functioned to equate lack of employment with lack of value, and thus an enduring feeling that disabled people are of lesser value. Eva described the work scheme through which she obtained employment as encouraging employers to be benefactors, as they don’t need to value the employee in order to justify taking them on. When discussing the role of the scheme in terms of her workplace relationships, she referred to it as ‘a dirty little secret that I had’, hypothesising that if colleagues knew about it:

Eva: I think that there would definitely be more issues with the responsibilities people would have given me. Like they would have thought ‘oh well she is here on a work scheme so she must be, there must be something wrong with her’ or something like that. I do a lot of [corporate work] and I suspect if they were aware that it initially started from a work scheme they may not put so much trust in me or give me such large profile clients to deal with.

Curiously, Eva is a total ‘success’ in the eyes of the work scheme because she has followed its model pathway– to be given subsidised employment through the scheme and then gain unsupported employment in the employer organisation after two years. However, Eva’s decade-long experiences of rejection served to structure the identities and actions that were available to her once she did have work.

Like Eva, Paul found being unemployed put him in a lower-status position – constructed as reliant on others. Like MCS, he engaged with the discursive construction of disabled people as misunderstood and/or exploited, but instead of becoming an advocate, he inhabited the subjectivity of the exploited individual. Indeed, he indicated in the description of his experience that he attempted to take on a defender and advocate role, but was never seen as someone able to take up this subject position. Instead in his attempts he found he was viewed as difficult, unreasonable and even possessing a distorted view of reality. Paul talks about the profession he has recently retrained in as his vocation, but feels unable to turn it into paid work because of the weight of the other things he has to deal with as a result of being disabled.

Paul: And so yeah, the brightest spot in my life would have to say is the [profession recently trained in], I thoroughly love it. I’ll just be a bit whimsical here, I wish I could just shut the whole fucken world out. [and put my energy into it] but it’s just very hard yeah, [trying to cope with everything else] just really leaves the mental state anchored down really does, it’s the proverbial boat anchor around the neck.

Sophia’s discussion of her experience of the construction of ‘value’ within the employment market was slightly different again. Sophia did not experience her body/mind as inscribed with a negative modifier of value in the same way or to the same extent that Eva or Paul describe, but she also did not experience disability as a qualification for work like MCS tells of. In her discussion about seeking work, she emphasised an approach in which she presented herself as an asset to the employer, while being honest about her difficulties that might affect aspects of a role she could carry out.

Sophia: You had to tell people what had happened. What you have done, what you can do and what you can’t do. And you have got to do that otherwise you get the job and you realise you can’t do it. You need to be able to talk to the manager or whoever is going to be with you to say: I am going to be a bit nervous, it is going to be a bit hard. There are some things I can and can’t do but if I’ve got some time or people that can help me then the more I do over and over again then I will get it.

Sophia appeared to see her worker-self as more detached from the value ascribed by employers or potential employers than did other participants – for example, talking of herself as an object of evaluation by employers, but stressing her understanding of their perspective:

JF: So those experiences where you haven’t been able to do something or even when the extreme because you haven’t been able to do it you haven’t got a job. How do you get through that? How do you get past that?

Sophia: You just do it again. That’s the only way that you do it. And if there is something wrong, it can just be the person that doesn’t like you. It can be they don’t the look of you, it can be a very busy time so they haven’t got enough time to tell you, to help you, to actually get the best of you. It can be absolutely anything. But if they can look at what you have done before and what you have been …

Sophia engaged differently with discourses about employment being a demonstration of value than the other three participants. She talked about employment as a demonstration of value to a particular employer, but did not broaden this out to society so much. Sophia has had the experience of being labelled as incompetent, but the aspects of her embodiment that lead people to this conclusion (difficulties with speech production, reading and writing) are not as immediately obvious, so she had an opportunity to present other aspects of her ‘self’, and also the experience of being thought of as successful and talented in a work situation prior to her injury. At the same time, she talked about other people with more physically obvious effects of a stroke and how they would have to do much more than others to project them-selves to get over the appearance of disability and make their ‘value’ visible.

Sophia: I know a lot of people with strokes, this arm spasms or it’s loose. But if they are comfortable of themselves and they chat in the end they don’t care that this [arm] doesn’t work but the person is there […] You have got to decide what you can do well.

The need to demonstrate an employable ‘self’ – human capital

As foreshadowed in Foucault’s 1979 public lectures discussing economic ideas key to the rise of neo-liberal thought and practices,[21] the notion of ‘human capital’ has become increasingly important in the context of work, employment, and other aspects of social life. Human capital is an aspect of ‘value’ beyond simply hours and skills of labour that sees the ‘self’ (including knowledge, experiences, personal attributes) a person brings to a job as carrying explicit value that can contribute to their worth as an employee and the wages or salary they can command. Discourses that construct ‘human capital’ and discourses that construct a ‘good worker’ (see [22]) emerged in the discussions with participants, shaping the notion of an ‘employable’ self. In the accounts given by participants, each talked of demonstrating their ‘employability’ (or not) within an employment market based on the subjectivities that were available to them. While each participant described having to negotiate their ‘saleable’ skills and qualities in combination with the difficulties they encountered due to their disabling appearance and/or functional limitations, the contrasts between participants with regard to what – and how – different aspects of ‘selves’ are taken to contribute or not to employability, were valuable in making the way these discourses operate more visible.

Paul is the only participant who had not gained employment more than a decade after his injury, although each of the participants had experienced (sometimes very long) periods of undesired unemployment. Paul described having lost a lot of his sense of self because of being in this position – the work he was now trained for contributed a lot to his ‘self’, but he remained unemployed. Despite this, and despite being interested in working, he also resisted taking up an identity as a potential worker, feeling that this was not the solution to his difficulties, and it seemed imposed by authorities. He described these experiences as a challenge to his sense of self and sense of value. Furthermore, his self-worth had been further eroded through negative encounters with the rehabilitation funding authority. Paul described feeling very governed, and following enforced enrolments in programmes, equated the drive to engage him in structured vocational rehabilitation with a lack of acknowledgement of and respect for his value in an employment market.

Eva also described feeling constrained by her disabled appearance, as discussed in the previous section. Eva’s conclusion was that because of this she is ill-suited to her chosen career, in an industry that is ‘all about image […] people are not really potentially prepared to hire someone [like me]’. When asked about where she thought she would be welcome, she supposed she would either have to be really ‘amazing’ to ‘make up for’ her disability, or be ‘hired within an organisation that cared for people or looked after people in some form’. She had also encountered situations where people expected that she would employed in a position where disadvantage was the focus (e.g. social work). However, Eva found the idea of her disability being foregrounded and valued as a qualification for employment both disingenuous and offensive.

In maintaining her ‘employable’ self, Eva had aspects of ‘self’ that she actively tried to remove from her work, remaining non-embodied to clients, and keeping her usual workplace secret.

Eva: I don’t like people to know when they work with me that I have a disability. And half the time they never meet me so they have no idea. And that’s kind of cool. And when they do meet me they are sort of, kind of shocked sometimes and you get these mixed reactions but once you prove the work then it’s ok. But it’s always frustrating, you know like when I meet a client I am still a little bit nervous because I know that when they meet me they will be like ‘wait a second, what’s she? Is she like the student doing some work experience or?’ And then when I sort of bust out ‘I have been here for nearly 10 years and I am a highly qualified [professional]’ you kind of like yeah, ‘oh ok’.

In contrast, MCS describes being proud of a job in which his experience of disability is valued and foregrounded. MCS’s ‘human capital’ post-injury is bound up with disability, and he constructs his desirability as an employee around his ‘grass roots’ identity:

MCS: That’s what it’s all about aye? What you can do for each other. And for me it doesn’t worry me, like I sit in a boardroom with a whole lot of executive type people but I still go down the road when [friend] called me and said ‘one of our guys needs our help with [rehab funder]’. I will go and support him in a meeting even though he swears like anything and doesn’t really follow rehab, he’s a bit of a rebel. To me it’s all about the people. If you can’t communicate with those at the grass roots then you might as well just shut yourself in a vacuum and deal with those bureaucratics up there.

For MCS, this ‘capital’ he had was revealed to him by relationships with mentors who he engaged with during a very difficult time following his injury, showing that ‘there were opportunities for me to utilise my skills within this [social services] sector’.

MCS: It took ages for me to get over [severe depression]. But [mentor] was one of the reasons why I did. Him and another friend of mine who challenged me every day. […] [Other friend] would come around just about every day ‘how are you doing?’ She would start getting involved in stuff. Just can’t stay at home. Use opportunities out there, hearing about doing stuff.

Despite his job being one in which disability is accepted and valued, MCS also discussed his anxieties about proving himself as a ‘good employee’, feeling bound by discourses about what makes an employable person in general. For example, feeling confident to go for a job only when he is sure his presentation and punctuality will be up to scratch, and the ability to focus on work rather than on domestic tasks – which depended on the reliability of his care situation.

MCS: If I had that [poorer] agency doing my cares at the time I was looking for a job I don’t think I would have been as keen to take it, because for me when I go out I want to make sure that I’m dressed right, you know a bit respectable and that kind of stuff.

Although aware of the notion of disability as a limitation to employability, Sophia did not articulate this in the same way as other participants. Sophia talked about her employability and skills for work as being despite her functional limitations, and of her experiences striving to get others to acknowledge this. Sophia talked of her own ‘capital’ in the way one might discuss a product or service – highlighting the good points and discussing the aspects that might worry the employer or detract from utility in the role, and possible solutions:

Sophia: I just said ‘this is who I am, this is what I used to do, I can do it. It might not be as fast but if it doesn’t work because the person wants to be by the till well I can do talk to them and get them to the till, and they can get the money from there. Is that going to be a problem?’

JF: So it sounds like you are quite upfront.

Sophia: Yeah I was. And I think you have to be. Because you can’t sit there and go ‘I’m ok, I’ll get it.’ You have got to tell them and then they can say whether they want you or not.

Sophia perceives that it is Sophia the employer hires, not just anyone, and (in contrast to Eva) that Sophia’s ‘self’ makes up for any limitations.

Different disabled subject positions and the actions available to individuals

Reflecting on implications from the discussion in previous sections, it seems pertinent to explicitly address the subject positions that were made available and constrained through social constructions; and different actions that were seen to be available to individuals occupying different subject positions. Previous experiences and social milieu were discussed in detail by participants when justifying their feelings and actions. Indeed, it is valuable to look at both direct disparities – such as MCS’s embrace of a subjectivity that Eva would consider offensive and humiliating; and other contrasts, such as Sophia’s seeing the societal limits of the impaired body but only being subject to this in the context of her ‘employable self’ in a very limited way, versus Eva’s identification with very negative societal valuations of the disabled body. We address these ideas in the following section, with reference to some of the discussion of social experiences and milieu from the participants.

Eva’s interactions with herself and with others reinforce a discourse of disability as dis-qualification. The interactions that reinforce this are so significant for her that the few interactions she has that indicate her value she treats as suspicious, not genuine.

JF: So you think maybe people view you more positively than you think they’re viewing you?

Eva: Possibly. But I can’t get my head around that, which is frustrating. It doesn’t matter how many times I am told it I am still like ‘whatever.’

JF: What do you think it would take to convince you? Is there something that you can imagine that might?

Eva: I don’t think there is. I don’t mean to put relationships as the same sort of league as a job but whenever I meet someone I still get absolutely shocked when they want to date me because I am like ‘can’t they see I’m in a chair?’ It’s very confusing for me. […] I am always like ‘oh there’s a catch there’s definitely a catch. Maybe they have a fetish or maybe’ you know? It’s got to be something else. Maybe they think I’m wealthy or something like that but it cannot be because I’m just a nice person or whatever.

This feeds into enduring thoughts that nobody would want to hire her unless she was extraordinary, which in turn reinforces the sense that her employer was performing a charitable act in hiring her.

Eva: I keep studying and I keep thinking about other things and doing [higher qualification] and stuff so I am sort of preparing myself for hopefully getting another job that is more challenging and I may be more respected or something. But I know in order to do that I will have to be like amazing. I will have to have [highest qualification] or get the best marks or whatever. Like no one would want to hire me unless I was perfect.

These thoughts and experiences limit the choices available to Eva in her employment – particularly seeking a promotion or another job.

In contrast, Sophia encounters the construction of disability as a negative modifier of value, but her existing identity as a competent worker moderates this. Sophia’s subjectivity is that of an acceptable worker, and a good candidate for a job, despite rejections.

Sophia: There were the managers who would, some were very good but they were just like ‘(sighs) come on hurry up, why haven’t you done this? Why haven’t you done this thing on the computer because you should be doing this?’ And I’m like ‘well because I can’t read and write.’ And they look at me like ‘cause you can’ ‘no, no.’ And sometimes I think they look and go ‘why did we get her anyway?’ At the very end when I left they were like ‘oh my god you were so great we want you back, can you come back, anytime?’ It was those ones who were a bit, they were younger, didn’t know, nothing had happened to them. So everything to them was just ‘well you should be able to do this, why can’t you do this?’

Indeed, Sophia described a two-year long quest to gain employment, followed by some very negative reactions from colleagues and employers about her limitations once she was working. Nevertheless, her enduring identity as a competent person and a ‘good worker’ – drawing heavily on her pre-injury career history and experiences – saw Sophia not only retain her job, but also eventually leave it for a higher paid and more interesting position.

While MCS described lacking confidence and going through significant depression following his injury, his experience with work contradicts the construction of disability as a negative modifier of value. The subjectivity MCS is called to take up (by his mentors and his employer) is someone who is not permitted to wallow, and should not be limited by seeing impairment as a constraint. MCS’s descriptions of interactions with others in a work context reinforce his identity as someone who is valued and contributing, enabling actions such as seeking hours, promotion, forming his own organisation, and challenging cultural stereotypes about disabled people:

MCS: I have done a couple of gigs where I have gone up in my chair onto the stage and jammed with a band. Everyone kind of sees me and they are all staring when I get up onto the stage there and I pick up the guitar and they are like ‘wow.’

JF: So you are kind of challenging that idea that disability is limiting.

MCS: Yeah that’s right.

Of note, the content of these interactions – reinforcing his ability to move past his limitations and live a full and ‘contributing’ life – is the same messages that irritate and humiliate Eva, who experiences them as limiting and charitable.

Paul’s subjectivity is perhaps the most limiting of the four, because of the significance of his experiences of feeling governed and oppressed.

Paul: I think at the heart of it is just the power relationship is just so imbalanced, and it’s my experience, but it’s also through the experience of dealing with other people that are to a greater or lesser degree down and out, they’re disadvantaged because of their disability. For some people it might be their mental state, perhaps they don’t have the communication tools, they may not have the confidence to be able to present their arguments or their concerns in a coherent way and to be able to elaborate these and enhance their communication with certain vocabulary and stuff, which really does give your expression a different edge that might not be available if you didn’t have such a command.

Like MCS, Paul’s experiences suggest that with the right sort of ‘engagement’ with others (particularly those in positions of authority), his experience of disability could be of value. Unlike MCS, however, Paul has not been able to realise this possibility, instead finding himself unable to escape his ‘disadvantaged’ position.

Discussion

Despite an increasing focus within disability advocacy and rehabilitation on seeing disability as socially constructed and far more complex than impairment, experiences described by these participants overwhelmingly illustrate a perpetuation of messages in which disability is seen as a deficit. Of interest, however, is that even within a social environment in which people continually encounter these deficit discourses, they have also described a variety of subject positions potentially available that enable worker identities that are not focussed on impairment. This is where we see this study highlighting an opportunity for positive interventions. There are three key points based on the findings of this study that we would like to discuss as particularly useful in thinking about the contribution to rehabilitation practice and policy:

Understandings about the role that constructions of ‘human capital’ play in shaping (a) possibilities for positive and negative worker identities and (b) possibilities and constraints regarding seeking or enhancing employment.

Contrasts between different individuals in terms of the identities and actions they are actually able to take up, and the role of social milieu and prior experiences in these available options.

The extent to which there is potential to help open possibilities for individuals to take up new worker subject positions through (vocational) rehabilitation practices that are informed by these issues.

Constructions of ‘human capital’ and available identities and actions

An important notion within understandings of ‘human capital’ is that qualification for and value within a role goes beyond the skills and work experience that a person possesses, and includes aspects of self, such as knowledge, life experiences and personal attributes. However, the ways in which this is interpreted into job roles, job descriptions and desired employees is variable.

An article by Foster and Wass [23] published in 2012 argued that in the UK one of the main problems that results in the inaccessibility of employment for disabled people is a job being conceptualised as a disembodied role – designed around ideas of what workers should be able to do (based on a gendered, ableist expectation of what humans are capable of), with the idea that the ideal worker will be the person who happens to best meet pre-defined criteria, created before a ‘real’ potential worker even has opportunity to apply for the job. This doesn’t allow space for potential attributes of a worker that may not be directly job-related but could enhance the functioning of the role and contribute to a workplace. Participants in our study clearly described a similar phenomenon, although also highlighted different and nuanced experiences of these sorts of encounters – from Eva’s experience of the inaccessibility of the job market because she did not fit employers’ ‘aesthetic’ expectations for a person in her role despite having the skills and experience, to Sophia’s challenge to employers to consider her value even though her abilities may not fit the standard job description. Conversely, MCS described a workplace in which his experiences of disability were valued as one of the most important qualifications for the job, and the role structured around his contribution. In each case, the person’s understanding of how their ‘value’ in the job was constituted (i.e. what made them a valuable worker to the employer) structured the actions that were possible for them in that type of worker identity – including seeking work, behaviour with clients and customers, developing the role, seeking more hours or higher pay and so on.

In addition to the interactions with the specific worker identity and workplace, available identities and actions were also described by individuals in terms of prior social experiences and the underlying understandings this re/created about how ‘someone like me’ is perceived in the world. As highlighted in the article by Edwards and Imrie described above,[10] our participants’ experiences of having disability inscribed in their appearance and its social meanings always part of every interaction greatly affected experiences of seeking and doing work. This also structured the ways of engaging with actual and potential employers, clients, colleagues, etc. that were possible for that individual. For example, in Sophia’s description, her ability to limit the rejection she experienced to the individual employer, and know herself to be capable when others denied her value was grounded in her identity as a competent and valuable worker, backed up by years of fulfilling this identity successfully.

These insights have implications for the ways in which rehabilitation professionals approach vocational goals and aspirations with the individuals they work with. The various interactions and experiences that have constructed an individual’s knowledge and presentation of their ‘value’ as a worker have an impact on the opportunities that are genuinely available to them. Thus, a background knowledge of both societal discourses and individual interactions with them may be vital to enabling opportunities that people experience as valid options, as well as affording information with which to navigate situations that could potentially reinforce negative identities and experiences.

Potential for expanding possibilities for worker identities and actions

The next question concerns the extent to which there is potential to help open possibilities for individuals to take up new worker subject positions through rehabilitation practices. A recent article by Cunnah [6] highlighted a relationship between disabled identities and past and present experiences in students who participated in work placements. The study described in the article identified how students tended to have profoundly negative self-identities based on experiences relating to attitudes about the ‘worth’ of disabled people at their homes and schools, but this was modified through the experiences of succeeding in education and work. Cunnah’s study further highlights the valorisation of worker as a legitimate and valued social identity shown in the present study and previous research – a significant issue (e.g. see [24]). However, it also demonstrates a possibility for the modification of the scope of possible identities through experiences.

One point clearly highlighted by the present study is the importance of seeing the potential for changing the scope of identities available to people as something that is a social as opposed to an individual exercise. Interactions and practices in rehabilitation form an important part of the social landscape for people who have an acquired neurological injury. An important aspect of this may be in facilitating practitioners to see ‘barriers’ not in terms of what is preventing a person being able to get or do a job, but in terms of what is limiting a person’s ability to embody an enabling identity. This necessarily involves developing a nuanced understanding of the identities and actions that are available to the individuals accessing their services – taking social history and current milieu into account. This would then make it possible to reflect on ways in which it might be conceivable to work with them and their communities to open up options. The importance of mentors and employers who can see the experience of disability as part of an authentic worker identity (as for MCS), employers and communities who see more than ‘disability’ inscribed in a person’s presentation (as for Sophia), and the availability of new experiences that have the possibility of producing a more positive social experience for people who have consistently experienced discrimination and disadvantage (like Paul, Eva) seem to be essential ingredients.