Abstract

Work as in paid employment is a social expectation and brings the benefits of social inclusion, acceptance, and identity. For individuals with disabilities procuring and retaining paid employment is challenging despite progressive legislation such as the Americans with Disabilities Act (ADA). This case study describes the experiences of a person who acquired a disability and its impact on her sense of self, and her place in her social environment. Her experiences are framed using a bio-psychosocial paradigm, and analyzed using the conceptual lens of occupational justice. The centrality of work to one's identity is discussed in the light of challenges to the implementation of the ADA and employers' attitudes to legislation and individuals with disabilities. A human rights approach to work is needed to identity individual, interpersonal, and organizational strategies to better integrate individuals with disabilities in workplaces.

Introduction

Full membership in most societies requires individuals to contribute to the economy, both as producers (e.g. labor) and consumers. Employment is not only a means for individuals to obtain tangible benefits such as income, but also a social expectation that confers status, acceptance, inclusion and integration. In the United States especially, work is integral to one's identity, so much so that one of the first questions people are asked by others when first introduced is, "What do you do?" One's paid work is a fundamental marker of identity (Unrah, 2004). Unfortunately for individuals with disabilities, finding employment can be challenging.

Despite increased efforts to enhance the labor force participation of individuals with disabilities, notably progressive legislation such as the Americans with Disabilities Act (ADA, 1990, 2009), unemployment and underemployment persist. The U.S. Bureau of Labor Statistics reported that the employment-population ratio was lower (19.2% vs. 64.5%) and unemployment rate higher (15.0% vs. 9.0%) for persons with a disability compared to persons without a disability. In addition, persons with disabilities are more likely to be employed part-time and in lower paid service sector jobs than their non-disabled counterparts (2011).

Persons with disabilities are disproportionately represented in the poorest segments of society and lack equal opportunity to improve their living standards (Schulz, 2010). It is important to address lack of employment access and opportunity as basic human rights issues because Article 23 of the Universal Declaration of Human Rights guarantees the right to work, to free choice of employment, to just and favorable work conditions, and to protection against unemployment (United Nations, 2012). However, human rights organizations have been slow in paying attention to employment issues in disabled communities (Organization for Economic Co-operation and Development, 2009).

The Americans with Disabilities Act (1990, 2009) is a comprehensive and significant civil rights law that addresses employment issues for people with disabilities (Karger & Rose, 2010). The intent of ADA Title I is to prohibit discrimination against persons with disabilities in areas of employment, accommodations, and services (e.g. transportation). Employers are mandated to provide "reasonable accommodation" to "qualified individuals with a disability" so that they can perform their essential job functions. While the intent of the ADA is laudable, its impact has been disappointing due to barriers to its effective implementation. The cost of accommodation is the most cited concern expressed by employers (Hernandez, Keys & Balcazar, 2000). Moreover, the process for identifying individualized reasonable accommodation is hampered by workers fear of reprisal in requesting for accommodation, and employers fear of ADA-related lawsuits (Karger & Rose, 2010).

In order to prevent discrimination and promote the full inclusion of persons with disabilities in American society, the statutory definition of disability applied to an individual is intentionally broad: "a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment" (ADA, 1990). The language of the ADA has been characterized as vague and unclear. Language such as "reasonable accommodation" and "undue hardship" leaves room for interpretation. This lack of clarity has resulted in "an open-ended bill that allowed courts to determine the parameters of the law" (Karger & Rose, 2010, p.80). Hence the legislation itself has become a barrier in a litigious society like the US, as employers fear costly accommodations and/or lawsuits. This fear appears to be unfounded, as most plaintiffs who sue under the ADA are unsuccessful (Lee, 2001). In response to the courts' narrowing of the definition of disability, in 2008 the United States Congress put forth amendments to the ADA, referred to as the ADA Amendments Act (ADAAA), that liberalized the interpretation of the ADA, broadened its scope and instructed courts to cover plaintiffs "to the maximum extent permitted" by the statute. The broadened scope of protection under the ADAAA has led to increased ligation as the threshold to qualify as disabled has fallen (Karger & Rose, 2010).

The National Organization of Disability has surveyed employers regarding the status of employment of persons with disabilities since 1980. Survey results indicate that the employment gap between people with and without disability remains large, with only a small fraction of people with disability participating in the workforce. The survey also found that companies are more likely to have policies and programs around general diversity rather than specific initiatives aimed at persons with disability. For example, few companies offer disability education or programs aimed at hiring persons with disability. The survey conclusion is "the environment for hiring people with disability needs much improvement" (2010, p. 6).

Further evidence of the limited impact of the ADA can be found by comparing two literature reviews by Wilgosh and Skaret (1987) and Hernandez, Keys & Balcazr (2000). The former, conducted prior to the enactment of the ADA, demonstrated that there was a substantial discrepancy between employers' espoused willingness to hire persons with disability and their actual hiring practices. Negative attitudes towards persons with disability prevailed among employers, except for employers with prior positive experiences with persons with disability. Additionally, larger companies had more disability-friendly hiring practices. Persons with higher education and/or with physical or sensory disabilities were viewed more favorably than those with intellectual or psychiatric disabilities.

The more recent review of 37 studies on employer attitudes towards workers with disability and ADA employment rights concluded, "there appears to be a veneer of employer acceptance of workers with disabilities" (Hernandez, Keys & Balcazar, 2000, p. 5). As in the previous review, employers' stated intentions towards hiring persons with disability did not match their hiring practices and behavior towards persons with disability. Employers' negative attitudes towards the disabled community likely stem from their limited interaction with persons with disability, as well as prevailing myths and stereotypes about disability.

The intent of the ADA is muddied and rendered controversial because of contrary conceptualizations of disability. How the "disability problem" is perceived by society impacts assumptions made about individuals with disability, the scope and focus of societal intervention towards persons with disability, and whether social inclusion of the disabled community is solely the concern of members of the community or if it is a shared societal responsibility. For example, the biomedical model views disability as a deviation from the norm; hence the disability is viewed as impairment(s) upon a "normal individual." This view focuses solely on the person with disability as impaired and largely ignores the environment in which they live. Individual-focused interventions prevail — the intervention "fixes" the person to "fit" the environment. The Social Security Disability Insurance program in the United States, for instance, adheres to this philosophy, and has subsequently been criticized for its paternalism and deficit-focused view of the person. Similarly, disablement models proposed by the World Health Organization (WHO) e.g., the International Classification of Impairments, Disabilities and Handicap (ICIDH, 1980), have come under scrutiny for their insufficient focus on the environment. As a result, the WHO replaced the ICIDH with the more inclusive International Classification of Functioning, Disability and Health (ICF) in 2001. The ICF conceptualizes general functioning and full social participation as an outcome of interactions between both personal and environmental factors; it follows that disability ensues from individual and social interactions. The ICF complements the ADA by explicitly calling for interventions that target both workers and their workplaces; its inclusivity and universality stems from conceiving the "disability problem" as both individual and societal.

Occupational science and occupational therapy acknowledges the complexity of human occupation and its performance. Both theory and practice recognize the reciprocal or transactional nature of the relationship between person, environment and occupation (Law, et. al., 1996); they interact in confluent ways to "co-define and co-constitute each other" (Cutchin & Dickie, 2012, p. 27). Occupations are not limited to what is commonly called "work", but rather include peoples' socially mediated quotidian activities that meet their intrinsic needs and societal expectations (Canadian Association of Occupational Therapists, 1997). Occupations structure the habits and routines of daily living, influence one's individual and collective identity, and provide satisfaction and autonomy (Whiteford & Townsend, 2011). Given the transactional intertwining of the person, environment and occupation, it is impossible to study work or work-related experiences outside of the workplace setting (Egan & Townsend, 2005). The Person-Environment-Occupation (PEO) model, comparable with the ICF in its inclusivity and universality, is a robust occupational model that conceptualizes the optimal conditions for occupational performance as the best fit between the person, their occupation and environment (Law et al., 1996). The PEO is the framework used in this study to disentangle the personal, environmental and occupational contributions to work-related issues encountered by persons with disability. This unraveling is necessary to create targeted interventions that optimize the workplace experiences for individuals and inform effective implementation of policy such as the ADA. The ADA's intent to promote full inclusion and equal opportunity for persons with disability necessitates the use of a transactional view of occupational performance as proposed by the PEO model.

However, any study of the ADA that does not acknowledge its roots in justice is incomplete. Occupational justice envisions a society in which all people have the opportunities, resources, and rights to engage in meaningful occupations to meet both intrinsic needs and societal expections (Townsend & Wilcox, 2004; Wilcox & Townsend, 2000). Occupational justice is a "justice of difference" (Whiteford & Pereira, 2012; Whiteford & Townsend, 2011). Occupational science perceives people as occupational and social beings and the doing of occupation influences one's being or identity and belonging (Wilcox, 1998; Rebeiro, 2001). Infringements upon the innate drive to engage in life sustaining occupations lead to occupational injustice resulting in alienation, deprivation, marginalization and imbalance (Townsend & Wilcox, 2004). Infusing the occupational justice perspective into the disability discourse is therefore imperative, as it examines the impact of contextual everyday injustices on occpational performance, a basic human need that is a requisite to the health of individuals and society.

This article melds the PEO model with the conceptual lens of occupational justice to uniquely frame the work experiences of one person and draws attention to the impact of the disconnect between the intent of the ADA and its implementation on the daily lived experiences of a person with disability.

Methodology

This case study, part of a larger study, is designed to illustrate the workplace experiences of one individual with disability. A qualitative case study design provides an in-depth understanding of a phenomenon to explicate context, process, and causes (Flyvbjerg, 2011). A case study approach facilitates gaining insight about the particular and unique experiences of individuals in their "real-life" context. This approach is relevant to occupational therapy and the practice of occupational science; other professions such as nursing, medicine, education and social work have also utilized case studies to inform practice (Simons, 2009). The intent of this case study is not theory construction. My purpose is to describe the everyday workplace experiences of an individual with disability in order to elucidate the complexity of processes that must be considered when developing a richer understanding of the challenges experienced by persons with disabilities and effecting workplace and cultural change.

Briefly, the larger qualitative study used a semi-structured interview with a broad range of open-ended questions that were formulated using the PEO model and included queries regarding work-related experiences, individual history, environment, relationships, etc. The study was conducted in stages focused on cohorts of individuals with specific disabilities: physical disabilities, mental health issues, visual impairments, and acquired work-related disability. Study participants were recruited through advertisement in a newspaper of a local disabilty organization, speaking to members of this community in various venues, and by contacting ADA consultants. The participants were given the interview guide and the consent form prior to the interview that typically lasted on an average 3.5 hours. Audio tapes were transcribed verbatim and the Framework Analysis approach, as described by Ritchie and Spencer (1994) informed the process of data analyses. This approach has been used in health research aimed at informing policy and was appropriate as the study's aim was to understand the impact of ADA in the workplace. It allows use of a prori codes based on a framework, in this case, the PEO model, and also identifies inductive codes that may emerge from data. The process involves five steps: familiarization, identification of a thematic framework (coding sheet), indexing (coding), charting (putting coded data into tables) and mapping and interpretation (Lacy & Luff, 2001).

This particular narrative was selected as the participant was articulate in communicating her experiences during an interview that lasted 4.5 hours. The larger study had many participants who were highly qualified, so this participant was not exceptional in that regard. This may reflect the method and sites used for recruitment. The participant was a successful and established professional with a strong occupational identity and self-worth when she became impaired. The "preferential hierarchy based on disability types" places her in a positive light with employers on account of the physical nature of her disability (Hernandez, Keys, & Balcazar, 2000, p. 12). Also, her impairments do not interfere with her ability to meet the essential job functions and the work accommodation she requires are minimal. Her experiences are context-specific and unique but share many thematic commonalities with the larger study participants, as well as those noted in other studies reported in the literature. She is therefore a good case study to illustrate the challenges encountered by 'high functioning' persons requiring minimal accommodations in procuring employment and gaining acceptance in workplaces.

Results

The Case Findings

Bonnie, a 53-year-old woman, acquired a disability in her 40's after falling on ice in 2003. At the time, she was a succesful marketing and management consultant with a legal background married to a high-level corporate executive. She was a "plenty successful" career woman with high earnings. She has a teenage daughter who lives with her. Bonnie describes her marraige prior to her disability, the impact her disability had on her marriage and the unexpected death of her spouse:

We were two very powerful individuals. And we respected that in each other, and neither of us had to worry about bowling over the other, so there was a level of comfort we had with each other in that way. And then I became dependent, and drugged, and broken and weak and it wasn't good for our marriage. And I was coming back and we were coming back, and then he was gone, in the blink of an eye.

Bonnie says that initially her disability impacted her marriage but her husband and she, as a couple, were able to work through their difficulties and get "back on track". Just when things were beginning to assume a semblance of normality, her husband, during one of his busness trips, unexpectedly collapsed in the hotel lobby and died. She lost the support of her long-time companion, becoming a "crippled widow."

The fall shattered the bones in her lower extremity; fragments of bone "acted as shrapnel and shredded [her] nerves." She has a diagnosis of Reflex Sympathetic Dystrophy (RSD) Stage III (American Association of Orthopaedic Surgeons, 2010). As Bonnie says,

…they rebuilt that half of my leg, and there's half a Buick in there… There's a lot of metal in there. And there's a metal joint, there's all sorts of things. But the bottom line is that it was the nerve bundle was scrambled. So it's scrambled all the way up to here [points to low back area].

Over a period of seven months, Bonnie underwent multiple surgeries and medical procedures, during which time she was hopeful she would walk again. Although she had the option to amputate, her surgeon was confident in trying a new technique of "re-building" her limb. After the surgery, she was told that the probability of walking again "was as good as being hit by lightning." In retrospect, Bonnie wondered, "If they had cut it off, if they had amputated that day I would have a prosthesis and I would be walking."

Identity Rupture and Reconstruction

Occupational science has focused on theory and research that explore the relationship between occupation and identities, particularly during life transitions and disruptions that change the ways of doing (Asaba & Jackson, 2011). Christensen (1999) theorized that occupations are instrumental in shaping a person's identity and hence are impacted when individuals experience disfigurement or functional limitations due to injury or disease. The competence or self-efficacy derived from the "doing" of occupations underpins a person's being and sense of worth. Bonnie's narrative makes clear that her career was an integral occupational identity, not just in defining her, but also in defining her marriage and spousal relationship:

My husband hadn't married a dependent little girl… He'd married a very independent, self-sufficient woman who could not only take care of herself but pretty much anybody who came into my world. I was someone that other people relied upon.

She describes how her disability changed how she came to be seen by others and its deep impact on her sense of self:

And the moment of my accident, how I was configured and how I physically appeared became the defining factor in who I was. And for me, that was crushing. For someone like me, who lives almost entirely an intellectual life, to suddenly be reduced to one's physicality was quite a journey indeed.

Bonnnie realized she need to reconstruct her identity and that work was instrumental to the process: "[I] decided that what I needed to do was de-medicalize my life. I needed to go back to work. I absolutely had to end this interminable focus on my body".

Occupational Disruptions

Bonnie's choices to be a consultant and lawyer matched her strengths and interests: her performance in these occupations relied largely on her communication and cognitive capabilities. The impairments due to RSD are physical and include pain, fatigue and in her case, impaired community mobility. Bonnie uses a wheelchair to move around and can still perform all the essential components of her job to meet the occupational demands of a consultant and lawyer. She anticipated being able to resume her career after surgery and rehabilitation, but given the time pressures in consulting work, Bonnie made the choice to instead work in a structured corporate environment. She just needed to "go where there were people who were thinking about something else, other than my body." With her impressive credentials and resumé, Bonnie had no difficulty making the cut for interviews and says that her success rate for procuring initial interviews was the same as prior to her having a disability. However, what changed was her need to broach the issue of her disability:

And somewhere in my discussion when we were really clicking I would say you know 'and by the way I ride a wheelchair and how can I get into your office building?' And within minutes the interviews were over. Literally, a minute or two, and they're done.

She realized that this approach was not working in her favor so she did not mention her disability or building access until a face-to-face interview was scheduled. She reports that six out of the seven times she did this, within 24 hours she would receive a call saying she needed to reschedule her appointment. They never rebooked. What Bonnie learned through this experience was that there existed a mismatch between her goals to reclaim her occupational identity and how society perceived her:

My goal was to try not to define my life around my disability. And I found the world doing it for me. I will tell you that the 6 out of 7 cancellations were devastating. Because I had always felt that I could always support myself and any other number of people on the face of the planet and I apparently didn't have that anymore.

Her determination to work was strong as she saw work as a way to recover so she refrained from asking any questions concerning her disability, and showed up to the interviews well ahead of time so "if I was going to have to crawl through the damn building I would still get to the appointment on time." Unfortunately these experiences were worse as she became aware of her "invisible" and "untouchable" status.

People, who had spoken to me for an hour on the phone, were really looking forward to meeting me, and they would come out to their reception area …nobody out there but a receptionist and me in my wheelchair. The woman comes out in a suit and she looks around the room, and all she can see is me. And I see panic on her face.

When Bonnie would wheel up and introduce herself, people's discomfort was explicitly communicated by their reactions and behaviors. Despite her pain, she jokes: "Contact wheelchairitis, I call it. They're afraid they're going to get it."

She decided to build her strength and heal on her own and chose to work at a local bookstore chain to be around people, establish a daily routine and get comfortable dealing with people and their attitudes. Although she was working well below her capabilities, "It made me get up in the morning, get dressed on time again and it made me go somewhere every day again. I regarded it as my own personal therapy program."

Soon after, she decided to apply her corporate consulting experiences to the disability sector and started a not-for-profit organization that housed individuals with disability. She was writing, publicly speaking about disability issues, and serving on policy committees.

My self-esteem was back in place, my husband made six figures or more every year. But I had always made my chunk and it wasn't about whether or not we had food on the table, it was about who I was. Nothing big, just my identity and my self-respect and that was rolling again.

The irony was that for a person who wanted to work in order to refocus on anything but her disability status, Bonnie eventually found employment and now works for the government in a disability policy department.

I had redefined my work life within the disability community, or selling my knowledge and my ability to articulate the disability experience to the non-disabled community. It was not my goal to redefine my life in terms of my disability. As a matter of fact it was specifically not my goal to do so. But it's what worked in the end.

Bonnie does not complain. Being productive, despite barriers and challenges, has helped her regain her self-worth and occupational identity.

I am enormously underemployed. Frankly, it's not a bad thing. Because it takes a lot of energy to live my life, to have the level of pain that I have, and the level of disability… they don't give you a power wheelchair until you cannot push a manual chair anymore. So I wore through both my rotator cuffs to get this power chair.

Underemployment is characterized as occupational deprivation and in some cases occupational imbalance (Townsend & Wilcox, 2004), but given Bonnie's circumstances and the fact that it is of her choosing, albeit compromised, it does not apply in this instance.

Workplace Marginalization

Bonnie states that her corporate skills and expertise are unique in the government agency that employs her and she is able to contribute to a wide range of tasks. She thinks that the government agency is willing to "cut some pretty wide swath" as she is very independent, competent and efficient. She was the first "wheeler" at a high level position and while she felt welcomed by the people who hired her, she did not feel accepted by her immediate supervisor and colleagues. Since Bonnie had made it clear that she was not interested in supervisory positions she does not think they felt threatened by her. She feels that having a person with disability in a disability policy department has made some of her co-workers uncomfortable.

[They] didn't want me because I'm an actual person with a disability who is coming into disability services run by the people who make their living off of us. So public health nurse and social workers know what is best for us. I …a potential consumer, I don't take their services, and I obviously didn't need them to take care of me.

The marginalizing behaviors of her co-workers appeared to be more than an interpersonal issue. According to Bonnie, she was hired as person with a disability to help shift the organizational culture from a paternalistic medical model to one that partnered with individuals with disabilities to formulate policies based on their experiences.

It was the intention and goal of the department to break the locus of control from the professionals' model, medical model, and to move the department to what we call in the disability community, the whole person model, or the person-centered model, the independent living model.

She was caught in the middle, having to help change the status quo and deal with attitudinal barriers of supervisors and co-workers who viewed her in a dependent capacity, and therefore had difficulty being questioned about the need for change in their ways of conducting business. She had to persuade others by making a case for language to reflect a shift to consumer-centered policy.

In the final analysis, we've been through the nursing statutes, we've been through the home care statutes, and a lot of the musts and shalls have become mays. And that's what I do for a living…I've been turning those musts into mays.

Bonnie attributes the difficulties with her supervisor to be one of the overall attitudes toward individuals with disability and perceives that the conflict, in part reflected the fact that her supervisor was part of a system that was being changed in ways that she may not have agreed with. "She just wanted me gone, because she didn't want to hear about this consumer directive nonsense. And I'm the lead policy person for consumer direction in the disability services position".

Bonnie's experience is not unique. Many other studies report similar marginalizing attitudes, diminished expectations, and unequal treatment by non-disabled service providers of individuals with disabilty (Brown, Hamner, Foley & Woodring, 2008).

Fatigue and pain make it difficult for Bonnie to remain at work all day. She needs to elevate her lower extremities to minimize edema and pain. She also needs to change position to avoid pressure sores. Bonnie initially requested that she be able to telecommute for part of the workday, but this was denied by her supervisor. Eventually, however, her request was approved by those who hired her. How this accomodation played out was another matter all together.

There were real problems around respecting the telecommuting. Because there was a tendency to book meetings they didn't want me at, didn't want the voice that I was hired to bring into the room. One way to make sure it wasn't in the room was to book the meeting for 3:30 or late Friday. So there was a lot of gamesmanship mostly by my supervisor.

Bonnie overcame this barrier by requesting teleconference, a request that was once again denied by her immediate supervisor. Again, the issue was only resolved after she approached those higher up to weigh in on the decision. These events create an adversarial environment in which individuals such as Bonnie, who are fully capable of meeting job demands, have to battle for the accomodation they are entitled to under the ADA.

The accessibility of the physical environment at Bonnie's workplace, also protected under the ADA, created additional challenges. Bonnie felt she needed to ask for things that should have been put in place regardless.

It's very difficult in your work environment …who do you go to and say that there's no Tampax machine in the disability accessible bathroom? It's very difficult to integrate these personal matters into your work life. It would not be your first preference to be discussing access to sanitary napkins.

The agency later hired two other individuals with disability. There was need to construct an appropriate accessible bathroom:

The bathroom is in the hallway …it's right near the division manager and assistant manager's office, and the timer on the door is so long that you're waiting… sitting in the bathroom and people are going 'how are ya? See you later! Are you coming to that meeting later?' and I'm sitting waiting for the door to close in the bathroom. A little embarrassing…keeping one's dignity intact is a constant struggle.

It is an injustice that Bonnie must face avoidable violations to her dignity on a daily basis.

Disability disturbs sense of belonging

Disability can bring about dramatic changes in workplace socialization and alter the social lives of individuals. Some transitional challenges are due to the person reconstructing their identity. "When one acquires a substantive disability, in the first part of the journey, one is different. Really your role in relation to others changes enormously in your established relationships." Bonnie's reconstruction of her identity was further complicated by the loss of her husband, which impacted her larger social identity as she tried to resituate herself in her social context.

My social life was impacted because I had to rebuild my image, so if I was to write a descriptive sentence of who I was, I'd describe myself as 'I'm the widowed cripple lady.' And so the first thing was widow… for me for quite a while there. And the second thing was cripple. It takes time.

Barriers to socialization can reside in the environment and can be physical or sociocultural in nature. Fortunately for Bonnie she has a circle of friends at work who she can join for lunch and she gets invited for other social gatherings.

There's a gang, a small circle that if we're free we eat together. They do not have disabilities, and I'm the first place they come to see if I can come along. So that piece of work socializing is very real for me. But my lack of ability to access other people's homes is the biggest barrier.

Although Bonnie feels accepted and included by some of her co-workers, there are still physical environmental barriers that limit her social life. "Having a physical disability is very isolating; using a chair is very isolating." She is cognizant of prevailing negative attitudes towards individuals with disability that also impact social interactions outside of work:

I believe that we are wheeling reminders of people's mortality. I am, in the lines of the movies at Saturday night, as we wait to get into a restaurant, when we go to the ballet or jazz club, I am a rolling reminder of our shared human fragility. Nobody wants to go there. Especially someone like me, middle aged, well dressed — generally I'm in professional clothes, and I look too much like you to not be profoundly disturbing. And I think that has a lot to do with the way we're treated.

Speaking of reactions of her close circle of friends to her becoming disabled, Bonnie said:

Some people took years to come back. Very few were actually lost, but there were years when I had great need for support that some of my closest and oldest and dearest friends could not cope with my pain and they couldn't do it. And I didn't blame them, but I felt the loss very deeply through most of that.

Bonnie has no control over the reactions of people in public spaces. She realizes that society places her "disability identity" ahead of all other aspects of her being.

How I was configured and how I physically appeared became the defining factor in who I was. And on top of that to become, literally, an object of pity. So I received this enormous amount of attention from strangers I met. I saw in their faces horribly how pathetic I must appear to them.

Stilted interactions, exclusion, avoidance and staring are interpersonal behaviors that contribute to marginalization (Robert & Harlan, 2006). It was a painful experience for Bonnie to come to term with her marginalization.

The psychological weight of being a point of attention in public is very heavy indeed and has caused me to understand why wheelers lead very circumscribed lives. …they tend to go to work, go to the only restaurants they know, go only shopping where they know, and go home.

She is hopeful, however, and remarks that given that the ADA is very young, that things will be better for the generation that grew up with the ADA in place as "they have been brought up to expect that their choices are not very limited indeed. So it is that ability to dream the same dreams as their non-disabled peers." In contrast, those who were disabled prior to the ADA learned not to expect much of themselves or society. It is common for people to hold misperceptions about disability and how disability impacts individuals' ability to function.

People assume that if I can't walk, I can't think…because many people do assume that it all comes in one package…that disability is sort of a family-style meal and it's not an á la carte sort of affair, where in fact and indeed we know it is an á la carte sort of affair.

Conferring "fictional identities" occurs by "totalizing characterizations" not based on familiarity with the person or grounded in reality (Robert & Harlan, 2006, p. 609). These are acts of marginalization and they can have profound psychological impact on a group of people reconstructing new occupational identities in environments in which different social rules and expectations operate. "From the point of view of someone who has acquired one [disability], I can tell you it was an extraordinarily difficult journey. Becoming invisible, becoming a public object of pity was very undignified."

The Issues Of Occupational (In)Justice: Analysis Of The Case

Occupational justice recognizes the right of people with different needs to be treated commensurate with their difference (Whiteford & Townsend, 2011). This aligns with the intent of "reasonable accommodation" under the ADA (1990, 2009). However, Bonnie's experiences of negotiating for accommodation were complicated, requiring strategic navigation of the organization and overcoming the adversarial attitudes of supervisors and co-workers. Even when persons with disability are hired, studies have shown that many employees are discouraged to request the accommodations to which they are entitled (Harlan & Roberts, 1998). The review by Hernandez, Keys & Balcazar (2000) reveals that little changed in the workplace in the first decade after the ADA was implemented, and that there continues to be a mismatch between employers' eschewed intentions and their actions regarding hiring persons with disability. There is evidence that reasonable accommodation is a source of "workplace tensions" as it is perceived as "special treatment" by supervisors and co-workers who are not disabled (Robert & Harlan, 2006, p. 620). Non-disabled individuals perceive differentiation aimed at enabling the participation of persons with disability as discriminatory or unfair. Scholars have refuted these arguments by claiming that everyone benefits from universal design (Zolna, Sanford, Sabata, & Goldwaithe, 2007); however, unlike specific disability accommodations, universal design may not sufficiently enable individuals with disability to perform essential job functions.

Definitions of disability reflect sociocultural values and dispositions; these are complex, political, and ultimately influence policy. It is important to examine the plurality of societal views and attitudes towards disability if common ground is to be reached. The challenges that Bonnie encountered mostly resided in her environment, not in herself. Given the dynamic and transactional relationship of persons, occupation and environment, it is impossible to analyze her experiences removed from her work and larger social context. "People see themselves, are seen by others, and see how others see them" and by "doing" occupations they express and reconstruct their identities (Asaba & Jackson, 2011, p. 150; Huot & Laliberté-Rudman, 2010). Like occupational identities, disability identities are also dynamic and constantly being negotiated in person and environment interactions (Brown, et.al., 2008). While Bonnie was the single subject of this paper, other studies in the literature report that her experiences regarding formation of her disability identity are far from atypical. For example, participants in Brown et al., (2008) report, "all they [employers] see is the chair" (p. 14). Bonnie's wheelchair came to define her identity and how people behaved in her presence. Rocco (2006) states that although "disability has fluid boundaries intersecting our other identities" (p. 170), it is not discussed as such and infused into discussions on marginalization, which is "the most dangerous form of oppression" experienced by persons with disability (p. 169).

Occupational marginalization is a form of occupational injustice that occurs when people deviate from socially constructed normative behaviors, and is perhaps dangerous, as it is invisible (Townsend & Wilcox, 2004). Bonnie is atypical when she wheels herself to a job interview, and is subsequently excluded from employment opportunities. Exclusion is one interpersonal mechanism by which marginalization occurs (Roberts & Harlan, 2006). Bonnie also experienced marginalization as "avoidance, stilted interaction, and staring" (p. 609) when she was made to feel "invisible" or "untouchable" or stared at by potential employers, co-workers and in the public arena. When individuals denied Bonnie the common courtesy of a handshake or communicated distaste to be seen in public with her she was denied the rights and privileges of mainstream life. A socially inclusive and supportive environment affirms an individual's worth, promotes participation, improves occupational performance and also confers a sense of belonging that is instrumental to identity, health and well being (Rebeiro, 2001). Social inclusion is both a process and an outcome; a means and an end to participation (Whiteford & Pereira, 2011).

Acquiring a disability and grieving for the loss of her old self was a very isolating and lonely experience for Bonnie. Any issue of diversity often spawns false assumptions and stereotyping of people who are different, often due to lack of awareness, understanding, and fear of the unknown. In Bonnie's case, in some sense, her high functioning nature and confidence made her too close to the norm of a professional and competent woman, but for the wheelchair. She reminded others of their own "mortality" and was hence excluded.

Perceived and assumed attributes of persons with disability are not aligned with actual attributes or capabilities and such workplace behaviors are a form of stigmatization and marginalization (Brown et al., 2008; Roberts & Harlan (2006)). Employers also perceive employees with disabilities requiring accommodations as less competent (Hernandez, Keys & Balcazar, 2000). It appears that while Bonnie wanted to 'normalize' her daily life through employment to get past her bodily impairments and disability, her environment created many barriers and did not let her do so readily.

It is therefore intriguing that ultimately Bonnie found work in the disability realm when she was hired by a government agency dealing with disability statutes and their implementation. The irony is that even in such a work environment hostile attitudes for accommodation and discriminatory practices persisted. The "othering" of Bonnie by service providers, now her co-workers, is not surprising as providers are influenced by their social context. Bonnie, hired explicitly to provide the "disabled" perspective, had "an uphill battle". Essentially she was challenging entrenched practices and attitudes of co-workers. Although she was officially one of them in terms of her employment, she remained first and foremost a person with a disability.

Individuals with disability believe that working confers dignity, inclusion, worthiness, and status as a citizen (Brown et al., 2008; Roberts & Harlan, 2006). The importance of work or productivity in Western societies to an individual's value to society, identity, and self-worth is attributed to industrialization and the protestant work ethic (Kantartzis & Mollineux, 2011). Prior to her disability, Bonnie's strong occupational identity and self-worth was largely derived from her work credentials, capability and self-efficacy. Persistent marginalization on account of her disability drained her of energy to "lawyer up and fight this battle". Significant evidence for the discrimination of workers with disabilities exists in the literature and the complexities of workplace interactions make it difficult to understand and prove discrimination in a court of law (Roessler, Neath, McMahon, & Rumrill, 2007). It is difficult to pinpoint, observe, and empirically test motivations that induce discriminatory behaviors; producing objective and evidentiary proof that can withstand scrutiny in a court of law is a challenge. Social stratification based on characteristics that are beyond the individual's control, such as disability, is defined as ascriptive. Robert and Harlan (2006) identified marginalizing interpersonal and organizational mechanisms of ascriptive inequalities in the workplace. This novel approach is important as Bonnie's experiences illustrate that discriminatory interpersonal interactions in workplaces reflect pervasive social attitudes. Ward and Baker (2005) apply capabilities and functioning to workplace integration of individuals with disabilities; functioning is the doings and beings of everyday living and when individuals are marginalized, they are deprived of opportunities to reach their occupational potential (Townsend & Wilcox, 2004). Ultimately, until legislation holds employers accountable to create safe and inclusive workplaces, full participation for persons with disability will be hard to access.

This case study has shown the gap between the intent and the implementation of the ADA. Effective enforcement may need more clear language, a case-by-case analysis of specific accommodation, and overall education around disability issues. Attitudinal barriers based on unfounded and erroneous assumptions play a significant role in marginalization of persons with disability. Short- term goals to change organizational culture with clear, enforceable and consequential discrimination policies and procedures are achievable. The scope of the ADA has been eroded in court battles and its very survival requires stronger legislation and activism (Roberts & Harlan, 2006). The transactional nature of the relationship of people and their environment, exemplified by Bonnie's experiences, illustrates that the intent of legislation cannot be actualized until social attitudes to disability change. Occupational justice requires re-visioning our social values to embrace human rights wholeheartedly and notions of the common good based on the interconnectedness of people, occupation and environment. Given the dominant and pervasive myth of rugged individualism that characterizes the American ethos, the concept of occupational justice may remain a theoretical bridge to practice for the foreseeable future.

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