Many people with disabilities share the mainstream ethos that participation in the competitive workforce constitutes a primary feature of their identity. While unpaid work may fulfill the desire to be productive and provide a sense of purpose and contribution, the cultural imperative to achieve personal autonomy partly through material independence situates paid employment at the centre of personal identity formation. While disability activists struggle to carve out an empowered collective identity instilled with rights-based protections, many people with disabilities identify with the liberal individualism upon which participation in the capitalist labour market is largely based. Individuals with disabilities seek not simply to shrug off an identity defined by burden, but to claim an identity marked by self-fulfillment. Within the world of paid work, then, tension and compatibility co-exist regarding the nature and value of identity development for people with disabilities.
The ubiquitous question, "What do you do?", during initial encounters in some social circles represents an attempt to resolve the complexity of identity through employment status. Other characteristics and social markers aside, the underlying question suggests, "Who are you?", and serves to ascribe social identity and value to an individual in order to situate the person within certain sociopolitical structures. "Who you are" in this sense reflects a functionalist understanding of identity that emerges from one's position or engagement with the paid labour market. The respondent is forced to self-reflexively consider "Who am I?" by relating to others through their experiences of paid work. The conflation of identity with occupational status is not necessarily a universal experience but does underscore the importance often placed on work in the process of identity formation. Without work, people sometimes are seen (or see themselves) to lack the value and identity sought in this figurative line of questioning.
An associative relationship between paid work and identity is particularly problematic for people with disabilities given recent authoritative reports that confirm their widespread and chronic unemployment (Crawford, 2010; World Health Organization and World Bank, 2011). While people with disabilities may not always directly encounter this line of questioning as a result of prejudicial assumptions about their labour status, many do not exempt themselves from the imperative to work and construct their self-identity through employment. Many people with disabilities share the mainstream ethos that participation in the competitive workforce is a primary feature of their identity. These personal identity goals reflect the sometimes conflicting dynamics of individual and collective identity formation in the disability community. Whereas disability activists fight for the construction of an empowered disability identity instilled with rights-based protections, many people with disabilities identify with the liberal individualism upon which participation in the capitalist labour market is largely based. The apparent contradiction between liberal individualism and collective identity formation may, in fact, find resolution in the common desire for economic integration and independence as individuals assert themselves through work-based identities.
What follows is an exploration of the dynamics involved in identity formation of people with disabilities through their experiences and perceptions of work. The first section introduces the construction of identity through work, paying particular attention to self-definition, cultural values of self-determination, and the role of identity politics. The second section deconstructs the association of work and identity by analyzing the narratives of 29 people with disabilities interviewed as part of this study. The analysis reveals the existence of complex and multidimensional worker identities that are premised upon emotional, material, interpersonal, and performative sociocultural drivers. The final section offers some preliminary conclusions which compel us to reconsider predominant associations drawn between disability and the concept of burden in the world of work.
Work, Disability And The Politics Of Identity
Work is a crucial determinative factor in the development of personal identity. Budd (2011) described a process of self-identity formation through social identity theory and finds that personal identity emerges, in part, from biographical aspects of a person's work history. Work identities are considered to be created and reinforced through social interaction. By describing their work in a social situation, for example, people are forced to make sense of work by conflating work roles with personal identity. Self-discovery emerges from associations drawn between the self, identity, and employment, constituting a process of self-actualization that situates identity formation in the terrain of economic participation and labour market roles. Budd (2011) also points to philosophies underpinning human resource management, where properly structured work is considered to promote psychological and physiological health by satisfying basic needs for personal fulfilment. Where work may contain certain intrinsic meaning, the pursuit of work is partly related to the search for identity. Watson's (2002) study of self-identity of people with disabilities describes a process of "self-objectification" or reflexive self-consciousness whereby people see themselves as others see them. Watson (2002) also finds many people with disabilities have fluid identities, however, and may not even see themselves as disabled. Instead, self-identity is seen as a constantly evolving process of self-discovery that defies fixed or essential categories that often hem people with disabilities into a disabled "master status".
A discursive process of identity formation undermines deterministic notions of identity (Gill, 1997). Gilson, Tusler and Gill (1997) assert that there are key differences between people with congenital and acquired disabilities in terms of identity development and find that for people with acquired disabilities, the "disabled identity" can eventually become dominant. An existential crisis is seen to emerge from interference with functional abilities that are considered requisites for a good life (Gilson et al, 1997). In their study of workers with Multiple Sclerosis, Driedger, Crooks and Bennett (2004) found that self-identity is often conflated with work-based identity. Functional abilities, as expressed through one's work, appear to mitigate a "loss of self" when reintroduced following the onset of various symptoms (Driedger et al., 2004). In this view, self-identity is so firmly anchored to employment status that interruption of work by health-related issues can unhinge a relatively stable sense of self. Similarly, Charmaz (1995) and Titchkosky (2003) suggest that while body and self are not identical there is often tension between the two, regardless of the temporal location of disability in one's life cycle.
Longmore (2009) finds that the precarious nature of identity and status is reflective of the predominance of a particularly individualist ethos in Western society. Longmore (2009) suggests that because "disease and disability seem so self-evidently matters of biology, rather than sociology or public policy, the disadvantaging social and economic consequences endured by sick or disabled individuals are perceived as 'natural,' the inevitable social outcomes of biological 'facts'" (p.147). Self-determination and independence are considered cultural values and demonstrate attainment of the neoliberal ideal sine qua non in Western capitalism (Overboe, 2009). Identity goals are often linked to individual economic success and independence. Abberly (1996) describes the emphasis in classical social theories placed upon self-identification and social integration through work, noting that "Such theories imply the progressive abolition of impairment as restrictive on the development of people's full human capacities. But as the total achievement of this aim is impossible, some non-oppressive disadvantage still remains for impaired people in such Utopias" (p.61). Within this sociocultural framework, where economic success through individual achievement is a top identity goal, normality is assigned to those who have achieved a degree of economic self-containment and apparent freedom from dependency through work.
Against this backdrop of radical individualism that lies at the heart of the mainstream liberal political economy, the disability movement seeks to conceptualize group identity partly through common experiences of exclusion and oppression. The construction and politicization of a cross-disability identity, however, is often complicated by the reality of an incredibly diverse disability community (Galvin, 2006; Hirsch, 2000). According to Valentine and Vickers (1996), "Disablement is a highly complex and contradictory process which affects people differently according to their age, sex/gender, race, class, sexual orientation and geographic location" (p.159). The assertion of a politicized disability identity transcends medical categories and personal differences in order to pursue the larger project of rights and freedoms typically denied those who identify as disabled (Barnes, 2000). One school of thought locates the root of the modern category "disabled" in the socially and economically transformative process of industrialization (Barnes & Mercer, 2005; Liachowitz, 1988; Russell & Malhotra, 2002; Thomson, 1997). In fact, Russell and Malhotra (2002) find that disability is indeed part of the "central contradiction of capitalism" (p.212) that creates and oppresses those categorized as disabled. Disabled bodies are unjustly seen as unproductive in an industrial capitalist paradigm where the ratio of labour costs to profit margins favour those considered least burdensome by employers. Disability rights activism, then, pressures policymakers to consider disability as a socially created category shaped by political, economic, and social forces rather than some intrinsically-based deficit. Economic participation and workforce inclusion have been top priorities in the disability movement and high unemployment rates of people with disabilities are often cited by activists as evidence of the need for more inclusive workforce policies and practices.
There remains an unresolved (or perhaps unresolvable?) tension between self-identity grounded in physical and/or psycho-social experiences of disability and the ethos of the disability movement based on collectivist notions of identity. Peters (1996) calls for "a disability consciousness that would drive a new discourse on disability identity that is preconditional to political identity and applicable to disabled people as they live their everyday lives" (p.215). Peters (1996) found herself depersonalized in a disability movement that built a politicized collective identity based largely on a critique of marginalizing social forces. Instead, Peters (1996) envisions a movement more tolerant of individuality as the potential key to independence without necessarily denying the reality of impairment or social construction of disability. Peters (2000) promotes a "syncretic view of disability culture" that allows for simultaneous identities to coexist with disability and the choice to participate in disability culture as an "active Subject" rather than an "objectified or marginalised Other" (p.599). Shakespeare (2006) argues that disability activism, similar to other social movements, captures only a minority of the disabled population, inviting scrutiny as to whether the disability movement is representative of the larger disabled population. Shakespeare (2006) expresses concern that the assertion of a disability identity within cultural associations reinforces the master status as disabled whilst disability politics are about breaking down barriers and establishing a level playing field. Instead of focusing on "disability pride" and ways to escape the biological realities of impairment, Shakespeare (2006) argues that disability politics should present opportunities for individuals to reconsider their impairment and social location.
Narratives Of Work And Identity
The following are preliminary findings taken from semi-structured in-depth oral interviews conducted with 29 people with disabilities in Toronto and southern Ontario. The interviews were collected as part of a larger project exploring the intersections of personal work histories and narratives within the context of an evolving disability rights movement in Canada. Participants were recruited through advertisements in cross-disability and disability-specific forums and newsletters, word-of-mouth, personal and professional contacts, and a snowball method using existing participants. While the study makes no claims as to its statistical representativeness of the disabled population, the group of participants represents a wide cross-section of people with acquired and/or congenital physical, sensory, intellectual, developmental, and mental health disabilities. The 29 interviewees were comprised of 11 male and 18 female participants ranging in age from 26 to 73, with an average age of 51. One explanation for the older mean age may be that participants were recruited as part of a disability history, which may have discouraged younger participants who may not have felt they related to the history of the disability rights movement, or may have considered themselves to have little personal history to relate. After completing the required consent forms, recorded interviews were conducted via telephone, in person, or online correspondence. Verbatim transcripts were generated and shared with participants when requested for further review and editing. NVivo 9.0 qualitative data analysis software was used to code and classify portions of these transcripts for the purposes of this paper.
Participants were asked why work was important to them and how they felt it affected their identity. Analysis of the transcripts followed a grounded theory approach using Charmaz's constructivist version in order to locate and classify participant narratives in accordance with the relevant literature (Charmaz, 2001). In relating their experiences and perspectives, four major themes emerged, including material drivers, performative sociocultural roles, image management, and emotional aspects. When considered as a group, the narratives reveal the importance of mainstream ideals embedded within personal identity goals, individual backgrounds, and material circumstances, more than subscription to ideological or politicized group identities. Where exceptions to this rule exist they represent an acknowledgement of barriers; however, even here, these barriers are more often conceptualized and articulated as obstacles to individual objectives rather than hurdles facing a politicized disability community. Participant narratives revealed the extent to which the association between disability and the concept of 'burden' is more correctly located in social attitudes and economic processes than in some intrinsic biomedical reality. Participants did not accept the notion that they represent a burden, but instead demonstrated they have the same desire to contribute, to achieve independence, and belong to a larger community beyond that of their disabled 'master status.'
Material Drivers
Participants shared an understanding that material and social benefits may be accrued through paid work. Many participants expressed an expectation to work that was firmly rooted in their formative years and continued into adulthood, shaping their beliefs about the importance of work to individual identity goals:
I started working when I was a young fellow in high school; I think I was only 13 when I got my first summer job. My family were independent workers. It was a matter of personal pride really.
Paid employment has always been important to me since I was 14 and got my first job. I've always wanted to live a great life, have a great adventure, and at least maintain the life I had growing up which was travelling, excitement, adventures.
I was obliged to work. In my family and in my social circle, everyone worked and men worked for money and they began working at what some would consider being an early age. So emulating those around me and wishing to be a man, I had to work.
Paid employment was something that, I knew from my family and background that I needed. It's just one of those things that are critical like brushing your teeth.
I worked hard. I come from a middle-class family where my parents worked hard and my sister has been successful. I come from this ethic of 'work hard'.
For others, the motivation to work was articulated in terms of basic human needs:
Working makes you feel fulfilled. It's one of those basic things of life. You're set, you're okay, all of your needs are met.
What we do is who we are, eh? If you go to a party and the person asks, what do you do? It's important to your self-esteem, to your confidence, as well as having very practical needs like paying the bills.
It's work I'm paid to do and deserves to be done, and someone deserves to be paid for doing it. It's wrapped up in who I am and what matters to me.
Work was viewed as an integral aspect in the pursuit of autonomy. Participants expressed goals of attaining material self-sufficiency through earned income. Material independence was seen to afford an unrivaled level of autonomy and personal choice with the potential to achieve more than basic subsistence. The accumulation of goods, pursuit of hobbies, travel experiences and the like, were associated with this pursuit of independence and considered tangible manifestations of personal autonomy.
By working and having good income I'm able to make choices in where I live, if I want to go on a trip somewhere, it helps me purchase additional attendant care services that if I didn't work I couldn't afford. It allows me freedom and choice.
Employment has made it possible for me to do the things I do, given me income to enable me to travel and participate in the community. I like going to theatre and live music. Employment increases your life options.
To be employed for most people is the ultimate in one's personal identity. It's kind of sad, but it's true. We all need money. As somebody said, it's not whether you're rich or poor as long as you have money.
I enjoy the fact that I can afford my van which gives me so much more mobility. I have the money to travel when I want. I can help out my friends and family if they're having issues. Of course, I can save some money for financial security as my condition gets worse.
Embedded within the goal of material self-sufficiency, participants expressed strong aversion to traditional notions of dependency on others, which were acknowledged as a possible but undesirable alternative to paid work.
I had the sense that I had to work as everybody else did, as my parents did. The idea of sitting in my parent's house with my hand out was really repugnant to me.
You won't have a chance to go away or do things, ever own a home, build equity, or contribute to your family, whatever you want to do, for all the same reasons paid work is important to anybody else, paid work is important to me. I want to support myself, I want to be financially independent. I don't want to be depending on other people to support me.
The need for income, to buy what I wanted in order to be independent of my family. For example I would buy my own clothes which allowed me to dress as I wished, I had money for cigarettes, movies, dating and the like.
Many participants pursued employment that provided them with a sense of contribution or "giving back" to society, the economy, and a larger disability community. Most participants conceptualized their employment in terms of helping others, even if this was not directly related to their role. There was a feeling that deep-seated values of reciprocity and generosity can and should be expressed through work. Many participants felt that work was more satisfying if personal values and work roles were properly aligned.
It's given me a general feeling of value to society because not only am I employed I'm also an employer. I feel that in my case at least, it is important because I'm contributing in more than one way.
It's important for my self-esteem to feel that I'm contributing to the community, society, and that I'm a taxpayer like everyone else.
It's part of my identity because I'm a giving person. I was raised to be generous and I want to promote support and recovery of the vulnerable in our community. I find that I want to contribute and I find that's what I'm doing.
The person doesn't need to be earning money to be benefiting the health of the whole community. But it's part of what gives you pride.
Things like attendant services I have at home. Transportation like Wheel Trans I have access to. Those things are all there. If I was on a disability pension I would still need those things and I wouldn't be contributing to the tax base, helping to earn my keep by not only paying a larger share of taxes by having a larger income, but contributing to society through the work I've done.
For me it's also a matter of self-respect. I need to work and be productive and contribute something. Contribute back as well to the disability community that helped support me. It's huge.
When I started working I was 23 and really excited. I thought, "Oh boy, I'm going to bring home a paycheque. I'm contributing to a company, having a good time, and helping people."
I've been able to achieve a lot of things for other people. Thousands of people I got jobs for did training and improved their lives. I've also been able to work with the disabled community and help a lot of organizations in the past.
Sociocultural Roles
Participants mostly felt that paid work afforded them a sense of status that was otherwise considered impossible to attain, particularly for those whose type or severity of disability was seen as precluding the ability to attract "gainful" employment. Many conceptualized their job in terms of a personal success in overcoming low expectations of their potential. Work was seen as confirming to themselves and others that they possessed a complex and multifaceted identity beyond the "master status" of disability.
Lots of people are surprised to find out I hold down a full time job and everything else. I think that's true for everyone. If someone finds out you're a doctor that gives you a certain status. If you're unemployed, you know…
It's very important to me as a professional to be taken seriously as someone who values education, values speaking up and writing and trying to help shape our society in a way that's fair and just.
Society has an entirely different respect for you if you have a title. If you have a business card, it gives you a lot of status.
I've also been able to be proud of my own accomplishments and be recognized as someone who knows what they're doing and has good knowledge.
Gives me a sense of normalization that I'm not just a person with a disability, and that I have relationships beyond that.
I'm pretty sure that most people when they first see me don't think I could be working at the type of job I've been at for 30 years. When I first started there was certainly scepticism about who I was and what I was capable of. I think a lot of my coworkers don't really see me as a person with a disability. I think it's improved my life quite significantly.
When I was leaving a position they had a lunch for me and my Mom came. They went around the room and said positive things about me. It was interesting because she saw me through other people's eyes. I think employment is something that can be your own, never mind being financially independent.
Where employment conveyed heightened status and demonstration of an integrated selfhood, it also carried risks inherent in hitching identity to economic participation. The role of worker was seen to play an active part integrating participants with their desired social and work-based identity. Many participants recognized danger in placing such great emphasis on the role of work in personal identity formation, noting that when employment was absent or lost, the resulting sense was of having lost part of their identity.
Employment became a detriment to my identity because the employment itself became less and less productive, rewarding, and contributory to the overall success of the company because my job became less and less important. That became more demoralizing. Employment has the possibility of being a really good thing and a really bad thing at the same time depending on how it goes and what your employer is like, what the people that you work with are like.
When I wasn't working I was pretty depressed. You get all these messages that what's valued is someone who's working. I was dating and nobody wanted to date me because I wasn't working. It's all about working. When people first talk to you they say "What do you do for a living?" It has a lot to do with self-esteem and self-respect and your position in society and how people view you.
The more it is difficult for me to find a job, the more I feel worthless. Even if I know I can do the job employed or not, it lowers my self-esteem because I am not the employer's first choice.
When I lost my job, not only did I lose my job, I lost a career. I lost who I was. The energy and emotional fortitude it takes to rediscover or recreate a self-image, that took me…. I am a go-getter, Type A personality, over-achiever, all of these things. I had no self-image for 8 years. I went from always being at the front of the life, top of the heap, type of person that had to be there and motivated to be ahead of the rest, so to speak.
Both male and female participants derived similar emotional and psychological benefits from employment, but faced different social influences based on their gender. Disability did not appear to exempt most participants from the sociocultural expectations attached to their respective gender identity. Traditional gender roles imposed on women revealed a complex relationship between their identity as a woman and as a person with a disability.
My mother had a traditional mindset about certain activities for girls and certain activities for men.
I think it was attitudinal regarding first as a person with a disability and then as a woman. When I was in intergovernmental relations I'd be in a meeting and I'd be the only female there; might be eight or ten guys. So in those days women also had problems.
I was a woman in a male-dominated profession … I was part of an incredibly low-numbered group in that profession. So firms were trying to boost their representation. I didn't disclose I had a disability. It took me a while to accept that that term applied to me, especially with my father. He suffered a stroke when I was four years old and was paralyzed on the left side. To me, that's who the legislation was intended for. I was always able to work and do my own thing without having to invoke legislation or get special consideration. So I didn't want it. But it was because I was a female in a male-dominated position that I had special consideration for that contract because they were trying to boost their numbers. I was told by family members that I shouldn't be in [my profession] because I was a female.
Several male participants did not feel that disability absolved them from the cultural imperative imposed on them as men to provide for their family. Several male participants expressed an acceptance of traditional performative gender roles such that success in employment confirmed their identity as a man and/or head of the household. Obstacles to employment thus represented a threat to a certain masculine identity which some men aspired to achieve. The pursuit of validated gender roles through employment reflected the fact that disability was not necessarily seen as an interdiction of predominant notions of the nuclear family.
It was humiliating. I'm a guy who likes to work. I just found myself stuck. Like a tire stuck in snow, just can't get out, no matter spinning my wheels trying to get out. I did everything they wanted, I was willing to do anything. I was young, had a family. Even when my kids were [age] seven to nine, it's like 'Daddy why don't you work? Mommy goes to work.' It's kind of embarrassing, humiliating, like why can't I be more productive.
I was obliged to work. In my family and in my social circle, everyone worked and men worked for money and they began working at what some would consider being an early age. So emulating those around me and wishing to be a man, I had to work
I married at 19 and needed to work to provide income to contribute to my family. For most of marriage the goal was that I would continuously increase my income to provide a better life for my wife and eventually for our children.
Employment has enabled me to do all the things that I said. I've been able to live a pretty normal life. I've owned four or five houses in my life. I've had many relationships. I've raised a family.
Impression Management
Some participants felt it was necessary to actively manage their image around employers, coworkers, and when in public. Attention to impression management reflected an understanding of the reality or possibility of negative associations that may be drawn between themselves and their disability. In the context of an employment setting, this was sometimes interpreted as a strategic response to these presumed negative associations. The sense of having to minimize or hide difference or to put others at ease was understood as a skillful operation that was often considered necessary for success in work.
Judgement was always a big part of the PTSD. I was always careful about what they saw. I always put that at higher importance about what they saw.
I happen to feel that it is my job to make others feel comfortable with me as a blind person, not the other way around. I find that humour helps break down barriers and in a very short period of time if I reach out to people and make them feel comfortable and they realize I am relatively normal, the blindness disappears. If you have no way of acquiring that skill as a disabled person, you're going to feel uncomfortable, the people around you with whom you're meeting are going to feel uncomfortable. It often translates into either isolating yourself as a blind person or you lash out and become aggressive rather than assertive.
Volunteerism and other forms of unpaid work were often considered "gaps" or "breaks" in employment histories that violated normative assumptions about upward personal and career advancement. Many participants had performed unpaid volunteer work instead of paid employment at some point, often for health-related reasons, and were keenly attuned to its reflection on themselves as job applicants. Many participants found that unpaid work carried negative associations in the competitive labour market and felt the need to mitigate its damaging effects on their projected image and self-identity.
On my resume I added these two volunteer positions because if you look at the rest of it, it ends in 2009, I always get asked what I've been doing since 2009. I got laid off at the end of 2009, but I didn't really start looking for work until a year later because it took six months for a diagnosis and four months for medication. So I was not about to embark on trying to convince somebody I could work for them until I got that sorted out.
I used to do volunteer work. That was a large part of my life … I will never go back to volunteer work because society demeans it, they don't see the skills and qualifications and intelligence. Even when I would apply for paid employment, a lot of it depended on volunteer work. They asked if you had any paid work experience. Well so what?! I understand there's a difference between paid and volunteer work because you don't have the same scope of responsibility. So fair enough. But there has to be some value and skill developed to enable you to get a better sense and ability to perform the paid job.
If I had said I had a kid in there, which some people consider. They look at your age and try to make an assumption. That's an acceptable reason for an employment gap for a woman. It's presumed that it's because you might have had a child. But if you had to take a break because you had a mental illness you needed to deal with or something else, that's frowned upon and viewed very negatively.
I've been trying to look for jobs for over two years now so it's hard to keep the self-esteem and confidence up there. I have to constantly work at it. If I didn't have my volunteer jobs then I know that I would plummet.
Emotional Factors
Work was closely connected to emotional health and individual identity goals. Participants shared a common understanding of work as being linked to self-esteem and self-integration. Intrinsic benefits, when matched by extrinsic rewards, provided many participants with a sense of personal pride in their ability to align identity goals with performative roles in work-based success.
I think it's given me more pride in myself. I probably have more pride in being employed.
Anybody would say it would make you more proud of yourself.
It's important to feel validated by what I do and how I bring things to the table based on my abilities and skills and not by my disabilities.
It's given me a lot more positive self-esteem, confidence.
This year on the surplus list did a lot of damage. I think it was harmful in terms of confidence. I got it back after I got another job but I was really scared that if I didn't get another job where would I end up and what would I do. But eventually I bounced back.
I was always confident in myself and who I was and my profession. It would frustrate me and make me very angry that for some reason I couldn't get the job everyone wants: nine to five, Monday to Friday, not contract work. It would frustrate me like crazy. Then with those periods of unemployment, it sent me into a little bit of depression. Even though I believed in myself, there was nobody who believed in me.
Personal growth and professional development were common identity goals often linked to employment status. The need to feel productive was often considered a universal requirement regardless of ability and was satisfied best through purposeful remunerative work. Participants emphasized the role of paid work in providing a sense of accomplishment and fulfillment of this underlying desire to feel useful.
The need to accomplish something, whether with or without a disability, would have always been there. It's probably even more so now because there's a certain … well twofold factor: your life expectancy is shortened so you have less time to pack it all in. And you know how quickly things can change. In a split second your life could be over. So you need to live life to the max all the time. It's always this sense of urgency to do everything you can.
I'm very much a Type A personality. Need to get up and be productive every day. Need to accomplish something.
On three levels then you have financial stability, social attitude and the very basic human need to be productive. I think that's the highest one, the need to be productive and to do something.
I've even had this psychiatrist, independent medical assessor, words to the effect that the work that I do makes me feel good and takes me away from my depression and my compulsions and blah blah blah. I came away from that and pondered it and thought, doesn't everyone feel better when they feel like they're being useful? I know I feel better when I'm able to pay my bills than when I'm not able to pay my bills or keep up with any level of society.
Conclusion
Narratives of people with disabilities regarding their employment experiences and perceptions of work demonstrate the extent to which work is a central component in the process of individual identity formation. Interview participants expressed a common aspiration for material success and personal fulfillment through work. People with disabilities are not exempt from expectations concerning sociocultural roles that may be fulfilled through paid work. While unpaid work may fulfill the desire to be productive and provide a sense of purpose and contribution, the cultural imperative to achieve personal autonomy partly through material independence situates paid employment at the centre of one's identity. Given the prevalence of liberal individualism and apparent pursuit of the capitalist ideal among people with disabilities, the risks of associating identity development with employment status are augmented by the reality that many people with disabilities are excluded from the world of competitive employment. The narratives in this study reflect a desire to be productive, autonomous, and financially independent more than begrudging acceptance that disability constitutes a burden to others. Participants rejected this 'burden' narrative, instead pointing to skills and intrinsic resources that enabled them to resist social and economic marginalization. Realization of certain employment goals was thus seen as a primary mechanism to confirm the expectations of independence.
Disability rights activists base their attempt to reconfigure labour market opportunity structures through a politicized collective identity and shared experiences of oppression. Activists seek to overturn a longstanding cultural exemption to work that excludes people with disabilities from social and economic participation. Immersed in a society that places heavy emphasis on the importance of work, many (if not most) people with disabilities identify with the liberal individualism of the mainstream and seek to distance themselves from the 'burden' ethos through individual effort and achievement. Participants in this study demonstrated that many people with disabilities are likely responding to the predominant ethic that surrounds work, while disability activists seek to harness this motivation to a larger political platform. Thus, where identity politics may reflect the dynamic interplay of a relatively few people with disabilities, it also appears to lend wider expression to the prioritization of work at an individual level. Pursuit of the capitalist ideal of personal autonomy and independence is fully compatible with the goal of full participation and integration regardless of whether an individual or collective identity is claimed. In the end, a reciprocal relationship exists where employment is situated at the centre of both an individual and collective effort to reconceptualize traditional notions of disability as a social or public burden.
Study of the relationship between the disability and work-based identity invites further consideration of questions regarding the connections between social and economic processes. In what other ways does capitalism affect individual and politicized identities? What are the consequences for a disability rights movement that fails to reconcile the priorities of the mainstream core and activist minority? Is this proclivity for individualism a reflection of the successful transmission of an empowering disability rights discourse to individuals with disabilities? If so, how does this affect our understanding of the manner in which disability activism recalibrates 'disability' at both the macro and micro level? As we reflect on disability and economic participation, so also do we deliberate on the construction of meaning and significance of work in modern society.
References
- Barnes, C. (2000). A working social model? disability, work and disability politics in the 21st century. Critical Social Policy, 20(4), 441-457.
- Barnes, C., & Mercer, G. (2005). Disability, work, and welfare. Work, Employment & Society, 19(3), 527-545.
- Budd, J. W. (2011). The thought of work. Ithaca: ILR Press.
- Cameron, D., & Valentine, F. (2001). Comparing policy-making in federal systems: The case of disability policy and programs. In D. Cameron, F. Valentine & O. ). Queens University (Kingston (Eds.), Disability and federalism: Comparing different approaches to full participation (pp. 1-44). Montreal: Published for the Institute of Intergovernmental Relations.
- Charmaz, K. (2001). Qualitative interviewing and grounded theory analysis. In J. Gubrium, & J. Holstein (Eds.), Handbook of interview research: Context and method (pp. 675-694). Thousand Oaks, CA: Sage.
- Charmaz, K. (1995). The body, identity, and self: Adapting to impairment. The Sociological Quarterly, 36(4), pp. 657-680.
- Crawford, C. (2010). Disabling poverty and enabling citizenship: Understanding the poverty and exclusion of Canadians with Disabilities. Canada: Community--University Research Alliance. Retrieved May 22, 2012, from the Council of Canadians with Disabilities Web site: http://www.ccdonline.ca/en/socialpolicy/poverty-citizenship/demographic-profile/understanding-poverty-exclusion
- Driedger, S. M., Crooks, V. A., & Bennett, D. (2004). Engaging in the disablement process over space and time: Narratives of persons with multiple sclerosis in Ottawa, Canada. The Canadian Geographer, 48(2), 119-136.
- Galvin, R. (2006). A genealogy of the disabled identity in relation to work and sexuality. Disability & Society, 21(5), 499.
- Gill, C. J. (1997). Four types of integration in disability identity development. Journal of Vocational Rehabilitation, 9(1), 39-46.
- Gilson, S. F., Tusler, A., & Gill, C. (1997). Ethnographic research in disability identity: Self-determination and community. Journal of Vocational Rehabilitation, 9(1), 7-17.
- Hirsch, K. (2000). From colonization to civil rights: People with disabilities and gainful employment. In P. Blanck (Ed.), Employment, disability, and the Americans with disabilities act : Issues in law, public policy and research (pp. 412-430). Evanston, IL: North Western University Press.
- Liachowitz, C. H. (1988). Disability as a social construct : Legislative roots. Philadelphia: University of Pennsylvania Press.
- Longmore, P. (2009). Conspicuous contribution and American cultural dilemmas: Telethon rituals of cleansing and renewal. In R. Michalko, & T. Titchkosky (Eds.), Rethinking normalcy: A disability studies reader (pp. 137-157). Toronto: Canadian Scholars Press.
- Overboe, J. (2009). 'Difference in itself': Validating disabled people's lived experience. In R. Michalko, & T. Titchkosky (Eds.), Rethinking normalcy: A disability studies reader (pp. 75-88). Toronto: Canadian Scholars Press.
- Peters, S. (1996). The politics of disability identity. In L. Barton (Ed.), Disability and society : Emerging issues and insights (pp. 215-236). New York: Longman.
- Peters, S. (2000). Is there a disability culture? A syncretisation of three possible world views. Disability & Society, 15(4), 583.
- Russell, M., & Malhotra, R. (2002). Capitalism and disability. Socialist Register, 38, 211-228.
- Shakespeare, T. (2006). Disability rights and wrongs. New York: Routledge.
- Thomson, R. G. (1997). Extraordinary bodies : Figuring physical disability in American culture and literature. New York: Columbia University Press.
- Titchkosky, T. (2003). Disability, self, and society. Toronto: University of Toronto Press.
- Valentine, F., & Vickers, J. (1996). Released from the yoke of paternalism and 'charity': Citizenship and the rights of Canadians with disabilities. International Journal of Canadian Studies, 14, 155-177.
- Vanier, J. (1998). Becoming human. Toronto: Anansi.
- Watson, N. (2002). Well, I know this is going to sound very strange to you, but I don't see myself as a disabled person: Identity and disability. Disability & Society, 17(5), 509.
- World Health Organization, & World Bank. (2011). World report on disability. Geneva: WHO Press. Retrieved May 22, 2012, from the WHO Web site: http://www.who.int/disabilities/world_report/2011/en/index.html
