Problematizing ‘productive citizenship’ within rehabilitation services: insights from three studies

Abstract

Background: The idea that everyone should strive to be a ‘productive citizen’ is a dominant societal discourse. However, critiques highlight that common definitions of productive citizenship focus on forms of participation and contribution that many people experiencing disability find difficult or impossible to realize, resulting in marginalization. Since rehabilitation services strive for enablement, social participation, and inclusiveness, it is important to question whether these things are achieved within the realities of practice. Our aim was to do this by examining specific examples of how ‘productive citizenship’ appears in rehabilitation services.

Methods: This article draws examples from three research studies in two countries to highlight instances in which narrow understandings of productive citizenship employed in rehabilitation services can have unintended marginalizing effects. Each example is presented as a vignette.

Discussion: The vignettes help us reflect on marginalization at the level of individual, community and society that arises from narrow interpretations of ‘productive citizenship’ in rehabilitation services. They also provide clues as to how productive citizenship could be envisaged differently. We argue that rehabilitation services, because of their influence at critical junctures in peoples’ lives, could be an effective site of social change regarding how productive citizenship is understood in wider society.

Implications for rehabilitation

• ‘Productive citizenship’, or the interpretation of which activities count as contributions to society, has a very restrictive definition within rehabilitation services.

• This restrictive definition is reflected in both policy and practices, and influences what counts as ‘legitimate’ rehabilitation and support, marginalizing options for a ‘good life’ that fall outside of it.

• Rehabilitation can be a site for social change; one way forward involves advocating for broader understandings of what counts as ‘productive citizenship’.

Keywords:

• Work-disability
• transition to adulthood
• productivity
• social change
• disability studies
• social inclusion

Introduction

The pursuit of individual productivity (e.g. paid work) within society is a central aim of rehabilitation. Indeed, the high social value placed on a productive citizenry has been a fundamental driver in the development of the allied (rehabilitation-focused) health professions of physiotherapy and occupational therapy, and for specialties such as vocational rehabilitation [1–3]. Rehabilitation’s focus on remediating impairments in order to help shape ‘productive citizens’ is tacitly understood to be an integral move toward supporting broader governmental goals regarding social participation, inclusiveness and enablement (and increasingly in recent years cost-containment). However, narrowing interpretations of ‘productive citizenship’ have been shown to have effects that run counter to these goals.

Background to the article

The three authors of this article first shared our work during a meeting held in Toronto, Canada in 2012 that brought together an international group of rehabilitation academics and trainees around the topic of ‘re-thinking rehabilitation’ [4]. Five years later, having each completed our doctoral work, the three of us came together again to discuss the compelling intersections and common threads we observed across the results of our seemingly distinct studies [5–7]. Although the three studies all addressed disability and rehabilitation in some manner, each had a different focus, research question and context (see vignettes later in the article), and none explicitly sought to analyse ‘productive citizenship’. Still, we observed that results from each study included compelling examples of how ‘productive citizenship’, as it is interpreted/defined within rehabilitation-focused settings, can inadvertently marginalize the very people the services are designed to help.

Noting instances of this paradoxical and unintended effect across our work, we committed to collaborating to examine the notion of productive citizenship in more depth in order to engage more deliberately in considering what mechanisms were at work in producing this marginalization. This article is a result of that collaborative work. As researchers and health professionals, each of us draws on in-depth experiences providing services in rehabilitation settings. As such, we felt compelled to reflect on the implications of our collective work for rehabilitation as we know it ourselves. Our aim is to engage others in similar reflections in relation to how the ideas presented here might apply to their own contexts. In what follows, we begin with a review of the concept of ‘productive citizenship’ as it appears in the literature. This is followed by vignettes drawn from each of our studies to lead into a discussion of some of the effects of current understandings of ‘productive citizenship’ in a rehabilitation context.

Productive Citizenship

The concept of individuals as productive beings has been described as the lifeblood of neoliberal societies [8,9], and throughout societal discourses there are reminders that we need to ‘earn our keep’, ‘contribute to society’, and so on. Furthermore, in many settings, paid work is unquestioned as the primary form of productive citizenship that adults should be engaged in. In the research literature and particularly in disability studies, the term ‘productive citizenship’ is used to critique narrow understandings of what counts as a valued contribution to society. Throughout this article, we use single quotation marks to remind the reader that the activities that are (or should be) considered ‘productive citizenship’ is contested – by us and by others. First, we outline existing literature on ‘productive citizenship’ and its components, then we explore the idea in the context of our research.

Disability as a challenge to conceptualisations of ‘productivity’ and ‘citizenship’

Existing critiques within disability studies point out that dominant conceptions of ‘productive citizenship’ are largely concerned with paid work, or to a lesser extent prominent (and documented) projects such as participation in advocacy and governance. Carey [10] argues that when ‘productivity’ and ‘contribution’ are understood in such limited ways, judgements of worth can exclude many disabled people’s actual or potential contributions, having the effect of automatically marginalizing these people. Carey highlights a lack of questioning or critique of what ‘productivity’ is seen to encompass. For example, ‘rights’ movements are commonly based on promoting the ‘right’ to contribute in ‘normal’ ways, rather than the right to explore opportunities to contribute in diverse ways that may harness capacities and strengths, and the value that may bring to a society [10]. This argument has overlap with Sunny Taylor’s 2004 article calling for people to think critically about the idea that paid work is the ‘best’ use of time and energy for all adults [11]. Ruth Lister argues that considering disability offers us an opportunity to challenge our understandings of citizenship more generally: that it “represents an important terrain for the theoretical challenge of addressing the tension between citizenship’s universalist promise and the recognition of difference” [12 p. 54] This idea of the disability as an embodied challenge to established ways of thinking echoes the work of critical disability studies theorists (e.g. see [13]), and is articulated positively by artist, actor and activist Neil Marcus: “Disability is an art. It’s an ingenious way to live” [as cited in 14]. Human rights advocacy has long been concerned with the absence of disabled persons’ perspectives on issues such as how ‘productivity’ and ‘social contribution’ are conceptualized. The United Nations Convention on the Rights of Persons with Disabilities [15] clearly outlines a need for greater access to education and to supportive (as opposed to substitute) decision-making processes to ensure that disabled people have opportunities to participate in society in ways that they and others value. This no doubt should include participation in dialogues about the re/definition of ‘productive citizenship’.

Perpetuation of exclusion – the role of ‘productive citizenship’

Considering the pervasive exclusion of disabled people from society, Lauren Pass [16] suggests that the notion of ‘productive citizenship’ is central to this problem. She argues that time spent by individuals is classified by society according to what is seen to be productive and non-productive time. In Pass’ account, disabled people are constructed as ‘non-productive agents’ because the activities they spend time doing are classified by society as ‘non-productive’. As a result, they lack participation in the narratives that construct the societies in which they live – creating a cycle of marginalization. Taking this argument into the current socio-political environment, Bill Hughes [17] shows how productive citizenship in neo-liberal societies is hinged on the dominant cultural idea of the independent individual citizen. People who do not currently participate in society in the model of the ‘independent individual’ (e.g. some people who experience disability) are seen to be consuming rather than producing valuable resources. This is problematic and exclusionary because it provides no opportunity for disabled people’s ways of being and doing to contribute to conceptualizing what counts as ‘value’ and ‘productivity’ [17].

Bath and Karlsson [18] provide a thought-provoking critique of dominant understandings of contribution as a citizen more broadly through analysing interactions in early childhood settings in Sweden and England. In their account, they describe acts by young children that could be interpreted as enacting citizenship (e.g. advocating or caring for others, negotiating the rules of their play) but were ‘ignored’ (either not noticed or interpreted differently) by the adults in the situation, because the children were not seen to have the capacity to enact citizenship. Bath and Karlsson’s critique prompts comparisons between the status accorded to children and that assigned to disabled persons. We could posit that people who are classified as disabled are also ‘ignored’ in their enactment of what could be arguably conceptualised as productive citizenship, either because others fail to see these acts, or because normative understandings of what constitutes the enactment of productive citizenship are too narrow.

Productive citizenship in rehabilitation

There is little doubt that, since its inception, the field of rehabilitation has maintained a focus on facilitating productive citizenship (even if the specific term is not used). Some broad examples of this focus include the widely-expressed view that achievement of paid work is a key goal and end-point of rehabilitation [19], and the emphasis in children’s rehabilitation on supporting transition to an idealized kind of adulthood that is predominantly associated with independence and productivity (e.g. financially autonomous, living independently) [7].

It is important to acknowledge that rehabilitation’s focus on promoting productive citizenship is reflective of broader neoliberal discourses linking citizenship rights with responsibilities. ‘Good’ and valued citizens are engaged, compliant and economically independent [20]. Thus, policies that aim to promote the integration of disabled persons tend to reinforce these norms and values [21,22]. Accordingly, in the context of children’s rehabilitation, practices aimed toward supporting disabled children and their families tend to privilege this framing and aim services toward shaping ‘future productive citizens’ [7]. Given these broader societal discourses, it is also not surprising that accounts from disabled persons themselves also reflect these ways of thinking about how to be a good citizen and who is valued in society [23].

In looking at how ‘productive citizenship’ is approached in mainstream rehabilitation theory and practices (explicitly and implicitly), we can begin to consider what sort of normative judgements are being reinforced. Normative ethics is concerned with how people ‘ought’ to live and act, and an examination of normative judgements can be very fruitful in considering how to critique ideas and practices [24]. Rehabilitation practices, like many other social practices, communicate normative judgements about how people ought to live through the priorities they assign (e.g. to particular goals) and what is judged as ‘legitimate’ rehabilitation practice (e.g. through scope of practice and public funding). The very notion of ‘productive citizenship’ could be seen as a normative judgement itself – communicating that citizenship is necessarily linked with productivity. Indeed this is worth critiquing, and disability studies theorists do trouble it in various ways (e.g. see [25]) The notion of productivity itself is a strong element of neoliberal discourse which also has important critiques aimed at it (e.g. see [8]) While acknowledging the importance of these more overarching critiques, we focus here on the effects of normative judgements as revealed in the specific understandings of ‘productive citizenship’ that are currently embedded within rehabilitation policies and practices.

Disability studies’ critiques of normative judgements in rehabilitation

While there are many strands of disability studies, each holds that medicine is overly concerned with biological, neurological, and physiological differences, to the exclusion of the social, cultural, and political determinants of disablement. Rehabilitation can be argued to be a kind of bridge between medicine and ‘living life’. Thus, it follows that it should indeed be concerned with the range of factors that mediate how the lives of persons labelled ‘disabled’ unfold. However, critique from disability studies argues that rehabilitation does not currently do this very well. For example, Ravaud and Stiker [26] describe rehabilitation as a “passion for assimilation through normalization at all costs” (p. 508). Indeed, the goal of normalization (a normative judgement that one ought to strive to function normally) is often the key target of critiques of rehabilitation. What both rehabilitation and disability studies agree on is that anything that signals or labels a person ‘disabled’ assigns that individual a particular identity that has consequences for their life. Rehabilitation aims to minimize these consequences through a focus on helping people return to, or approximate, normal ways of being and doing. Disability studies argue that this focus on normalization perpetuates negative attitudes about disabled people that position impairment as ‘to-be-fixed’ and living with disability as undesirable [27].

If we agree that rehabilitation has much to offer in relation to recovery and adaptation [28], how do we address the problems that normalization introduces without abandoning rehabilitation entirely? Some researchers have indeed been asking: In light of the issues regarding the social impact of normalization that disability studies has raised, what could rehabilitation do differently [29,30]? Our aim with this paper is to contribute to this nascent field by presenting vignettes drawn from our research to explore issues related to normalization and how these are linked with the notion of productive citizenship.

Marginalizing effects of ‘productive citizenship’ interpretation for disability and rehabilitation services: vignettes from three studies

In this section, we present and discuss vignettes to illustrate examples of the less visible, potentially harmful effects of normalization as demonstrated in each of three empirical research studies. All three studies employed a critical social science perspective, meaning the research approach was focused on questioning taken-for-granted rehabilitation-related practices [31]. Our emphasis on marginalizing effects is intentional, as these effects are often obscured as attention is focused toward achieving observable moves toward ‘normalization’ (see discussion above). Each of the vignettes provided (based on an aspect of the findings from the study described) is focused on a different level of society in which these effects are rendered visible. The first reveals effects experienced at an individual level. In the second, consequences at the level of wider social networks (families, caregivers, social supports) is evident. Finally, the third vignette provides a view onto how rehabilitation participates in a macro-level of widespread socially-prevalent assumptions, norms, values and practices. This intentional progression from micro through macro effects is designed to preface the discussion that follows where we argue that understandings of ‘productive citizenship’ embedded in rehabilitation have observable effects at all levels of society. We suggest that these widespread unacknowledged effects should prompt changes in how the project of rehabilitation is envisioned and enacted. It is important to note here that ‘rehabilitation’ does not refer only to particular services, but to the array of policies and services throughout a society that are based on the tacit assumption that people with impairments will benefit from various forms of support and treatment to enhance their quality of life and participation.

Vignette 1: Examining effects of individual embodiment of ‘productive citizenship’ norms within and beyond formal education

Our first vignette [6] draws on research that investigated inclusion with young people in Ontario, Canada who used augmentative and alternative communication – that is, youth who had little or no speech and communicate in other ways. The methodology combined visual methods with dialogical interviews [32] to generate rich, multi-perspectival data. Analysis focused on the youths’ experiences and understandings of inclusion, and was oriented by the sociologist Pierre Bourdieu’s [33] theory of practice. Bourdieu postulated that persons in dominated social positions (in this example, disabled youth who communicate primarily in ways other than speech) have two options: accommodation, where one makes a virtue of conditions of necessity, or investments in “individual effort[s] to assimilate the dominant ideal” [34, p. 384]. The following vignette illustrates experiences of one participant, Sarah¹ (aged 19) who had recently completed high school.

Unlike many disabled students who experience education in segregated social spaces, Sarah was placed almost exclusively in mainstream classes. Throughout her schooling, she engaged in arduous and ongoing struggles, regardless of the personal costs, to meet the standards ‘normally’ expected of her non-disabled peers, and to disavow any positioning as ‘disabled’, ‘different’ or having ‘special’ needs. Though she was unable to walk, and had significant communication impairments, Sarah had gone to great lengths to present herself as ‘normal’, independent and capable. For example, she used a power wheelchair, but resisted other assistive technologies, stating: “I feel stupid using a speech-generating device…it is just not a good fit. It’s not me”. She explained that using a letter display to spell out words showed that she was “normal” and “smart enough to spell”. Sarah’s account suggests she was acutely aware that in most fields, assistive technologies signal dependencies and detract from the user’s legitimacy as a normal or non-disabled person. To use a speech-generating device, according to the logics she had internalized, would be to acknowledge and make visible her communication impairments. The tradeoff was that her communication interactions were constrained by the availability of a familiar interlocutor which greatly reduced opportunities for her to interact socially. She had earned a high school diploma and had been elected prom queen - a distinction that she valued as recognition of her persistence in ‘overcoming’ disability.

As Sarah expressed pride in these accomplishments during her participation in the research, she also revealed information about the extraordinary efforts she had invested toward masking her differences. For example, she confessed that in five years of school, she had never used the toilets because she did not want the non-disabled students to know that she needed assistance for toileting. She waited until she was at home. Sarah needed assistance to eat her lunch, so she ate in the special education area of the school where her need for help would go unnoticed by the non-disabled students. Nevertheless, she said she had no interaction with the other special education students because: “I didn’t belong there”. The statement suggests she had adjusted to the harsh and inequitable demands placed on her as she took on the work of ‘fitting in’ to mainstream social spaces.

At the time of the study, Sarah was considering enrolment in a college program that accommodated disabled students. She explained, “You have to have a purpose in life” and expressed she’d like to work in a job helping older persons, in part, because she felt she could relate to the losses in function that some older persons experienced. When Sarah and her mother attended an open house to learn more about the college program, she was told she would have to use a speech-generating device and become more independent in self-care before she could be admitted to the program. This news was devastating for Sarah as it disrupted her sense of self and the ways of being and doing that were important to her. Thus, Sarah was confronted with a paradox. She had invested extraordinary effort over many years to resist taking on an identity as ‘disabled’ so that she could be valued as ‘a normal teen’. She had managed this by minimizing her differences and resisting the use of assistive devices that she felt would be stigmatizing. However, at this juncture she was being confronted by institutional demands that she ‘own up’ to being disabled by taking on such devices so that she could be more readily understood and ‘more independent’. The route toward becoming the type of ‘productive citizen’ that she understood to be valued and desirable appeared to involve compromising her sense of self in order to strive for an uncertain goal of future employment. In this situation, rehabilitation is orientated towards provision of equipment designed to shift toward more ‘normal’ expectations of independence and thus meet program eligibility requirements. An alternative might involve leveraging the influential potential of rehabilitation to advocate for change at the level of college requirements, or to support Sarah and her family in exploring a wider range of options for enacting ‘productive citizenship’.

Vignette 2: Transition to adulthood policies structuring what counts as legitimate ‘productive citizenship’ within wider support networks

Policies on transition to adulthood for young disabled people have been created or proposed in many jurisdictions and countries that are considered advanced democracies, such as Australia, Canada, New Zealand and the United States. Rehabilitation professionals take cues from related health, education and social service policies to inform the development and implementation of transition programs and interventions for this group. This study [7] examined how the transition to adulthood of young disabled people is constituted as a particular kind of ‘problem’ in public policies and the implications for the parents of young people labeled with developmental disabilities (e.g., intellectual disability, Down syndrome). Guided by a critical approach [35], it involved analysis of documents from three public policy areas in the province of Ontario: rehabilitation, education, and social services for people with developmental disabilities, as well as parents’ interview accounts of their experiences of transitioning their children to adult services.

On the surface, across the documents and parents’ accounts, the problem is construed as one of transferring from one set of services and supports to another between childhood and adulthood. In a sense, the explicitly understood problem is a disruption in the structural arrangements of policies and services when disabled children ‘age out’ of children’s health, education and social services between 18 and 21 years of age. That is, these children reach an age when they are no longer eligible for children’s services and must transfer to services oriented to adults. However, there is a related and less apparent understanding of the problem, which, when unpacked, can interfere with what we understand and take for granted about disability, ‘normal’ child development, and what constitutes a successful transition to adult life.

The documents focus specifically on disabled youth, implying that their transitions are problematic in some way compared to another group, presumably non-disabled youth. But what is held problematic about their transitions? The problem rests on deep-seated assumptions about socially valued ways of being, becoming and doing as an adult citizen that have become accepted as normal and ideal. These assumptions shape the aims of transition policies toward particular roles and activities, such as engagement in productive paid employment and independent living in the community, as indicators of a successful transition to adult life (particular interpretations of ‘productive citizenship’). Several statements in the documents suggest the relative importance and value placed on particular traits and activities in adulthood, to which all young people are expected to aspire and achieve or atleast approximate. For example, a transition planning document from the Ontario Ministry of Education [36] states that:

“Almost all students will need or wish to engage in productive employment, supportive employment, or meaningful volunteer work” (p. 20)

These statements reflect taken-for-granted assumptions about an idealized adult citizen in westernized societies –an adult citizen who is productive in the sense of contributing their time to a paid job or something that closely approximates it. In reality, many young people with a diagnosis of developmental disability experience challenges achieving the social roles and activities associated with productive employment upon leaving high school, if at all, and thus ‘fail’ to achieve the expected social and developmental trajectory toward an independent, productive adulthood within expected timeframes. Yet, parents’ interview accounts revealed that they pursued these transition goals to the extent possible with and for their children. For example, in an interview, Evelyn, the mother of a young woman labeled with developmental disabilities, stated:

“It's always the same route. You graduate from high school and you continue on with education … in order to position yourself in society” (emphasis ours)

Evelyn’s statement revealed an inherent assumption that the ‘same route’ or trajectory from school to further education and eventual paid employment was expected for every student. It was important to pursue this path to establish oneself financially and socially in adult life. She did not question or consider if another route might be more realistic, feasible or better for her daughter. Rather, her account in the interview reflected that she had internalized social values and beliefs about productive citizenship in adulthood, which shaped her transition planning goals for her daughter toward these ends.

Throughout the interviews, parents also shed light on some harmful effects that transition planning for their adult children had on themselves. They discussed significant fatigue, uncertainty and distress they experienced even with the services and supports that are set up to facilitate transition planning. They also discussed other consequences for their lives, such as deferring their own employment, future retirement and social time with their own friends in order to support their adult children to achieve goals that were difficult, if not impossible. These policies had both discursive effects (e.g. directing attention toward productive citizenship as a preferred goal and away from other possible goals) and lived effects on families (e.g. lack of services and supports for young people who cannot achieve this goal and for their families who continue to provide care and support), that were overlooked or unquestioned. These parents experienced a disruption in their own ‘normal’ life course trajectories as they took on extraordinary work and responsibilities to create opportunities, to enable productive citizenship to the extent possible for their children. Thus, the policies were implicated in perpetuating the pursuit of ‘as-normal-as possible’ that were embedded in ‘official’ messages about how both youth and parents should conduct their lives, which in turn structured the lives and opportunities not just of the young people labeled with developmental disabilities, but their support networks as well – becoming a further, ‘unofficial’ re/production of these norms. In this example, the emphasis on achieving paid work or the closest possible approximation can direct attention and energy away from conceptualizing adult ‘productive citizenship’ in ways that may be more appropriate, relevant and feasible for young people with developmental disabilities and their parents.

Vignette 3: Vocational rehabilitation policies and practices: some of the most restricted interpretations of ‘productive citizenship’ in society?

The final study [5,19,23] was a Foucauldian discourse analysis [37] of the policies and practices relating to vocational rehabilitation in New Zealand, which relates also to similar policies and practices in other westernised countries. Data relating to current practices were documents, images, environments and actions that depicted or justified vocational rehabilitation practices: including intervention descriptions and resources, intervention settings and procedures, policy documents, planning and funding proposals, and an industry blog.

Work-disability is experienced when a person is unable to do work they are currently engaged in, or unable to engage with work more generally because of a gap between their skills and experience and the requirements of available work [38]. Work-disability can also occur as a result of perceptions regarding what a person is able to do in relation to what is ‘valued’ in terms of skills, expertise and contribution [23,38]. Vocational rehabilitation is a form of rehabilitation that is explicitly focused on ameliorating or minimizing work-disability. In line with the primacy placed on paid employment in westernised societies, the majority of vocational rehabilitation practices are focused on a narrow conceptualisation of work – defined as paid employment. Furthermore, funding models require fast, cost-contained services, resulting in the majority of services utilizing an approach that is focused on quickly (re)obtaining familiar or standard work – characterized as ‘addressing barriers to work’ [19]. Alternative approaches reserved for populations seen to be more ‘seriously’ disabled focus on trying to re-envisage possible work, but retain societal norms of career and vocation in this enterprise – and often reproduce the goal of striving for a putatively ‘normal’ paid work situation, commonly referred to as ‘mainstream’ employment [19].

While the goal of ‘normal’ paid employment derives from the need for people to feel as though they are genuinely participating and contributing to society, the almost sole focus on this goal in vocational rehabilitation also plays a key role in legitimizing only a very narrow conceptualization of productive citizenship, and thus has unintended marginalizing effects for those who struggle or fail to achieve this goal. Furthermore, our discourse analysis of vocational rehabilitation in New Zealand identified that there is a significant danger of ‘failure’ in mainstream vocational rehabilitation for people whose work (re)entry is not fast and straightforward, which can occur for a variety of reasons including complicated interpersonal relationships at work and other what is termed ‘psychosocial’ reasons. In a sense then, perpetuating a system of vocational rehabilitation that defines successful resumption of work-ability in such a narrow way can be argued to actually produce ongoing work-disability – classifying people who do not achieve that definition of success as ‘off track’, ‘complex’, or ‘difficult’ which in turn affects their understandings of (and responses to) their own situation [19,39].

Follow-up case study research (using participant interviews as data) also demonstrated how people’s interactions with the concept of worker ‘value’ in the context of an ‘employment market’ throughout their working life play a key role in constructing what actions are even possible in terms of job acquisition, job movement and career development [23]. For people labelled ‘disabled’, these interactions are often stigmatized and negative – resulting in considerably compromised work-ability and confidence. Once again, rather than simply increasing work-ability for disabled people, vocational rehabilitation practices designed for achieving ‘normal’ functioning in ‘standard’ jobs can also inadvertently participate in the production of work-disability for people whose abilities or circumstances position them outside of these norms. Marginalizing or even disallowing legitimate and available vocational rehabilitation practices that explore ‘productive citizenship’ beyond this very narrow conceptualization in effect reproduces some of the most restrictive understandings of productive citizenship perpetuated in wider society – the very notions that were disabling in the first place [5].

Conceptualizing our vignettes as ‘ruptures’

‘Rupture’ is a term borrowed from the philosopher Michel Foucault meaning a break in what is understood and taken-for-granted. It has been applied analytically in various ways [40]. In this article we draw on Foucault’s notion of rupture to characterize discordances between what is understood and taken-for-granted in rehabilitation and what is illustrated through the vignettes. The three vignettes we have provided can be seen as ‘ruptures’ in that they force us to problematize the way ‘productive citizenship’ is conceptualized and operationalized within rehabilitation, showing that it can have effects that are not consistent with the intended purposes of enablement, participation and inclusiveness. Taken as a series, they allow us to consider the prevailing ways of thinking and the aims and practices within rehabilitation services across the various ‘levels’ of society and question what is occurring. We suggest that they foreground several ruptures:

• Rehabilitation persists in reproducing assumptions about the negative value of disability and the positive value of aiming to approximate normal. This can result in individuals, such as Sarah in vignette 1, continually striving toward embodying a ‘norm’ because they believe (have learned) this is the only way to be valued and to access valued material resources. Yet paradoxically, even as such individuals work (perpetually) to embody an idealized norm, they can be confronted with instances where they are required to enact or prove their disability in order to access valued resources. These practices might be regarded as ‘perception management’ in line with Goffman’s seminal work on stigma [41]; however, oriented by Bourdieu’s [33,34] theory of practice, they can also be understood as more pre-reflective, logical strategies aimed toward assimilating idealized norms.

• Policies (and the practices they inform) that are intended to open up possibilities for marginalized groups can inadvertently function to further marginalize these same groups and their support networks. Vignette 2 shows how transition to adulthood policies can have unintended negative effects when disabled youth and their families are on pathways directed toward achieving narrowly defined forms of productive adult citizenship. Such policies fail to consider the costs of aiming toward these idealized outcomes, and whether or not such achievements are possible or even desirable for these youth and their families. Furthermore, alternative visions of what constitutes a valued adulthood are obscured.

• Rehabilitation systems and structures can embody normative values that are a poor fit with their purpose (enablement, social participation, and inclusiveness). Vignette 3 shows that when vocational rehabilitation reproduces narrow conceptualizations of productive citizenship, it can have the effect of constraining possibilities for people to contribute. This is contrary to vocational rehabilitation’s aim of enabling people to retain or regain their ability to contribute productively to society.

In these ways, rehabilitation-as-normalization-practices participates in the continual reproduction of narrow understandings of ‘productive citizenship’.

Moving forward: what these ‘ruptures’ open up for consideration

Having identified these ‘ruptures’, we interpret them as a call to ask what they can show us about how to move forward, about what might be possible, and what rehabilitation could be that it is not currently. To do this, we suggest, rehabilitation must be re-visioned as a possible site of social change. One of the things that qualitative research in rehabilitation often shows is that rehabilitation encounters can be enormously influential in people’s thinking. Participants in research focused on rehabilitation encounters often talk about the importance of their relationships with rehabilitation professionals, the faith they have to have in them, and the importance of their opinions [42,43]. The importance and authority ascribed to the professionals and the rehabilitation encounter come not just from the individuals involved, but also from somewhere beyond those people – they are inscribed from the professions, and from the legitimacy of rehabilitation practices in broader society [44]. The influence is significant and thus so is the weight of responsibility. In the argument we are making here, this influence is coupled with above examples of what can happen when narrow interpretations of productive citizenship are re/produced in rehabilitation. However, that same influence has a potential to open up different possibilities.

A recent article by Maria Greco and Paul Stenner [45] suggests that encountering life circumstances where a person cannot do or be what they want to do or be (as is often the case when people enter rehabilitation) locates that person in a particular ‘liminal’ space: becoming what these authors call a “subject in transition” (p. 160). These subjects in transition have “a propensity that might also be described as a heightened state of suggestibility. Subjects in transition are primed for transformation, while the definitive vector of that transformation is still fluctuating and undetermined" [45 p. 160]. The significance of this insight is that in rehabilitation, we have a situation in which people are primed for a transition and have enormous investment and faith in the systems and people who offer that transition. Research has repeatedly shown that unless confronted by lived experience of disability, most people are resistant to the sort of social change that would make the most difference to the lives of people who currently experience disability [e.g. 46,47,48]. This being the case, rehabilitation is arguably a logical site with which to advocate for change as it is one in which the people it ‘serves’ are being confronted by that lived experience and are also are in a state of disruption and are seeking that “vector of transformation”, - what they will become.

Rehabilitation professionals have a unique opportunity to be explorers and pioneers in this space. If rehabilitation is a site of social influence, how could disability and rehabilitation services enable shifts toward broadening the ways that productive citizenship is conceptualized and addressed? Foremost, this aim can be realized through increased recognition that change does not necessarily have to begin at the 'macro' or policy level (while this level of change is undoubtedly vital with respect to transforming social and political contexts/conditions). Change can be catalyzed through 'micro' interpersonal interactions; it can be enacted through clinical encounters as rehabilitation professionals discuss the overall aims of rehabilitation. It is in these early interactions that certain possibilities/goals become accepted as ‘right’ or ‘correct’, leaving others unspoken [49]. Rehabilitation practices can unintentionally de-value ways of living a ‘good’ life as an adult citizen that might be more feasible, desirable or suited to a person’s life circumstances than those resembling dominant notions of productive citizenship.

Returning to the vignettes, in Sarah’s case (vignette 1), rehabilitation could be a site where she and her family encounter advocacy at the level of college requirements and/or exploration of what “a purpose in life” could mean for her, and a place where she might eventually feel comfortable to discuss the challenges of striving for ‘normal’ and explore possibilities for other positive subjectivities. For Evelyn and her daughter (in vignette 2), rehabilitation services could be a place where the ‘transition’ from childhood to adulthood is explored in a way that opens up opportunities for how a broadened conceptualization of productive citizenship could intersect with what a ‘good life’ might be for that family. Vocational rehabilitation interventions (vignette 3) could create space to challenge, explore and re-imagine productive citizenship, rather than remain a place where only the current narrow conceptualizations are re-inscribed.

What we are suggesting here is an expansion of the possibilities of what rehabilitation could be. We contend that a broader conception of productive citizenship would support and give equal attention and consideration to a wider range of valued ways of being and doing in discussions between disabled people and service providers, including sensitive discussions about the potential positive and negative consequences of any option. In expanding these discussions, the views of people experiencing disability would be sought in order to better inform notions of what it means to be a productive citizen (and even, whether the concept is a useful one). Such conversations might begin early in the process as “vectors of transformation” [45] are explored. The potential exists, if we open spaces for these types of conversations, for both disabled persons and rehabilitation professionals to bring into everyday parlance a far wider range of options that people (disabled and non-disabled) feel permission to discuss, that rehabilitation professionals learn how to value and support, and that rehabilitation as a field can advocate for at the macro level of health and social policy and funding.

Conclusions

We are calling for shifts in rehabilitation away from a focus on aiming toward idealized norms toward advocating for social change; rehabilitation is well positioned to take a leadership role in promoting a wider range of socially-valued ways of being and doing across the life course. This necessarily entails opening up and expanding the ways productive citizenship is understood and enacted. Indeed, a move away from normalization is not a new idea; many disability studies scholars, artists and activists have explored this space (e.g. see [11,13,14,25,50–54]). Furthermore, despite suggestions for more affirmative rehabilitation-focused models (e.g. see Newsome and Kendall’s paper on ‘expansion rehabilitation’ from 1996 [55]), and calls for new approaches (e.g. see [29,30]), rehabilitation beyond normalization is still largely absent. As the issues we have highlighted have effects across multiple levels of society, specific actions cannot be prescribed; rather, these should respond to situated, local contexts in order to promote positive change.

Although confronting less visible effects of rehabilitation, such as those illustrated in this article, can be helpful in thinking about unintended negative consequences and how they may have arisen, finding ways forward requires more than a reflexive gaze at current practices. We suggest that engagement with disability studies - scholarship, art and literature may inform ideas and discussions about how to ‘do’ rehabilitation in ways that appreciate and support embodied becoming that moves beyond underpinning notions about the positive value of being ‘normal’. However, it will be important that such engagement by rehabilitation practitioners be recognized as legitimate professional development that is supported by employers, professional organizations, funders and policy-makers (who could also benefit from the same resources). When it comes to productive citizenship, we argue that the role of rehabilitation needs to be in supporting exploration of a wider array of options and possibilities, rather than primarily emphasizing normalization. Finally, we argue there is a need for research focused on examining social structures and power relations that work to resist attempts at re-visioning rehabilitation, and on identifying opportunities to shift away from continually reproducing the status quo.

In the (alleged) words of Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has”. What we would add to this sentiment is that once you suspect it is needed, it helps to open up a conversation about what that change could look like. Having started a conversation in this article, we hope that our readers will open it up at different levels in rehabilitation practice settings and in further research.

Acknowledgements

The authors would like to acknowledge the participants who gave their time and perspectives in the studies mentioned, and our study co-authors. We would also like to thank the four anonymous reviewers who provided valuable feedback and suggestions regarding how we communicate our message. Please see individual study references for funding and support information. No additional time or funding was sought for the combined analysis presented in this article.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1 All names are pseudonyms. We have intentionally elected not to give ‘diagnoses’ as these reflect medical understandings of impairments rather than social effects.