Introduction to the Special Issue on Disability and Work: Toward Re-Conceptualizing the 'Burden' of Disability

In the intersection of work and disability, economic concerns mingle with those of employment equity and human rights. Constructions of disability can lead to social exclusion and dependence, as individuals with disabilities are often identified as a 'burden' to society, an assumption reinforced as normative by prevalent bio-medical and economic paradigms. The dominant focus, largely on impairment rather than assets, often leads to social exclusion for individuals with disabilities and their households, contributing to unemployment, poverty, and marginalization. Reshaping conceptualizations so that barriers to work are curtailed or eliminated is important for many reasons, not the least of which are reducing poverty, maximizing human resources, and promoting human dignity (WHO, 2011). From a critical disability rights perspective, such efforts require fundamental shifts in thinking, the adoption of a social model of disability, and challenging the concept of disability as a burden, which reinforces notions of dependency rather than citizenship.

The United Nations Convention on the Rights of People with Disabilities, Article 27, recognizes the right to participate in the labor market and in a work environment that is "open, inclusive and accessible to persons with disabilities" (United Nations, 2006). Despite widespread ratification of the Convention and non-discrimination laws in many countries, unemployment rates remain significantly higher and employment rates substantially lower for persons with disabilities than for people without disability (OECD, 2010). Even when employed, income can be significantly lower, with workers who report long-term disabilities earning considerably less than their able-bodied counterparts (Galarneau & Radulescu, 2009). Employment rates also vary considerably depending on the type of disability. Those with intellectual impairments or mental health difficulties report the lowest employment rates (WHO, 2011), suggesting the complex nature of work and disability issues and variations in public attitudes that are not uniform, but rather influenced by a variety of factors. In addition, policy approaches based on external conceptualizations of either able or disabled influence and reinforce binary dualisms. This can be especially detrimental to individuals with episodic disabilities who are situated within co-existing worlds of health and illness, and who would be better served by policies and practices that account for fluidity and variation in human embodiment (Lightman, Vick, Herd & Mitchell, 2009).

The broad scope of this issue, in conjunction with three noteworthy and related factors, underscores the need to know more, and to act, with urgency. The first factor is the need to comply with employment equity and human rights legislation that guarantees people with disabilities access to the workplace, to appropriate education and vocational training, and to opportunities to participate fully in society as citizens, as outlined in the UN Convention on the Rights of People with Disabilities and ratified by 103 state parties to date (United Nations, 2011). The second factor is the labor shortages projected to unfold as the population ages and baby boomers retire in Western industrialized nations. Persons with disabilities can contribute significantly toward filling projected shortages if we are proactive with respect to accommodation and changing constructions of disability as a 'burden'. In a recent issue of Disability Studies Quarterly, Tororei (2009) affirmed that, "Persons with disabilities are a national asset whose productive potential cannot be ignored" (para. 7). The third factor is the current global recession and its effects on individuals, families, and societies. Layoffs and government retrenchment, including substantial reductions to spending on health, education, and social services, affect persons with disabilities to a greater extent than others, further compromising their opportunities and capacities to sustain employment (Morris, 2011). We believe it is essential to use evidence-based research and policy learning opportunities, as well as leadership and examples of effective workplace practices to promote positive change.

Our purpose in this Special Issue was to seek contributions that critically examine policies, practices, and conditions that affect the opportunities available to people with disabilities to participate in meaningful ways in paid employment. These contributions do so in fascinating ways as the authors have provided a variety of perspectives for understanding the many issues that are pertinent to our appreciation of this complex subject. Looking from the outside in, a number of papers critically examine recent policies and policy changes, and use national statistics and surveys to examine whether and how such policies have affected employment rates and patterns among persons with disabilities. A complementary lens, informed by interviews and focus groups with employers, policy makers, representatives of disability organizations, and people with disabilities, provides information and insights on how these policy reforms are viewed by stakeholders. Finally, several papers offer insights from the inside out. These include reflective interviews and individual case studies that reveal the complex challenges faced by individuals with disabilities as they work to find employment and maintain positive identities for themselves, often despite negative or disabling experiences encountered in the process. The papers are international in scope, including research conducted in the UK, the United States, Canada, India, Norway and Tanzania. They also reflect a variety of disciplines and perspectives, which is essential for understanding the complex interface between work and disability concerns.

The tensions between labor market approaches that focus on promoting employment and reducing reliance on disability benefits using neoliberal welfare reforms on the one hand and the adoption of a rights-based approach that focuses on inclusion, choice, and change in workplace attitudes and practices, on the other, are clearly evident in many articles in this special issue.

The first paper that effectively addresses the tensions between neoliberalism and constructions of disability is provided by Kumar, Sonpal and Hiranandani in their examination of disability and employment in India. These authors make the important point that an understanding of outcomes of efforts to promote the employment of persons with disabilities requires a critical assessment of the context within which underlying conceptions in society are formed, and that influence employment opportunities and experiences. Kumar et al. provide an overview of past and present government policies in India and critically analyze the social construction of ableism, the role of religious and cultural beliefs including Karma, and the complex impacts of neoliberalism as they relate to economic and employment opportunities for persons with disabilities. Observations, document reviews, and interviews with employees with disabilities and their employers provide the data on which case studies of three organizations — one in the public sector, one in the private sector, and a rehabilitation organization that provides training and employment placement services, are based. The authors' insightful analysis reminds us of the need to pay attention to the conditions of employment, employers' attitudes and practices, and the extent to which employees with disabilities are accommodated, once employed. They also remind us that many persons with disabilities are engaged in the informal sector; especially in rural communities, and that we lack information and perspective on their experiences and the fact that many are employed in circumstances that provide meager and/or precarious incomes without access to social protections.

Randall Owen and Sarah Harris' article, "No rights without responsibilities: Disability rights and neoliberal reform under New Labour" examines the rationale for a series of social welfare reforms undertaken in the UK between 1997 and 2010, which was extended by the current Conservative/Liberal Democrat coalition government. These reforms were designed to make labour market participation essential for those with disabilities deemed capable of employment. These authors note that proponents of disability rights and national governments both view increasing labour market participation as a desired goal, albeit from different perspectives. From a disability rights perspective, failing to address the barriers to employment encountered by persons with disabilities is a fundamental issue that results in poverty and social exclusion, placing additional economic and social burdens on those with disabilities who desire to work. From a neoliberal government perspective, initiatives that increase employment are used to increase self-sufficiency and reduce the burden of welfare expenditures resulting from long-term reliance on disability benefits. The authors provide important insights into how workfare policies have been implemented through focus groups with a variety of stakeholders. Critical factors that have affected implementation to date were found to include: ineffective and selective communication about the reforms; information and policy rhetoric that focuses on individual responsibility, with a greater focus on the supply side and a perceived push for beneficiary claimants to take "any work", with no or very limited opportunities for career development and educational opportunities beyond vocational training; and lack of attention to the underlying causes of unemployment and initiatives to address the demand for people with disabilities as workers. Interestingly, all stakeholders expressed ambivalence or skepticism about the extent to which the UNCPWD can result in positive changes, suggesting that the Convention provides inspiration, but that real change will require change in opportunities and values, as well as a continued political commitment to address the systemic nature of exclusion, in order to align both the spirit and practice of policy reforms with a rights based approach.

Heather Aldersley's article, "Disability and Work: The United Republic of Tanzania's Workplace Policies in the Persons with Disabilities Act of 2010" provides an overview and analysis of policies designed to promote employment of persons with disabilities in an emerging country that has a longstanding commitment to disability policy, including legislation introduced in 1982, a revised National Policy on Disability in 2004, and adoption of more far-reaching policies in 2010 following ratification of the UNCPWD. Tanzania's policies include a quota system that requires employers with 20 or more employees to hire and retain persons with disabilities at a minimum of 3% of their workforce. Aldersley discusses the benefits and drawbacks of a quota model compared to a civil rights approach, noting that the former can result in segregation, with recognition of difference in these circumstances coming at the expense of equal rights and integration. Despite a number of accountability mechanisms built into the 2010 Act, a recent survey and the author's interviews with people with disabilities and other stakeholders reveal a substantial shortfall between policy and practice. Employers' lack of awareness of their legal obligations and negative or stereotypical attitudes of persons with disabilities, including perceptions that their employment would be a financial and/or organizational burden, appear to be major factors. In the absence of incentives, positive models, and enforcement mechanisms, it seems unlikely that the goals of the legislation or the aspirations of persons with disabilities will be realized.

An interesting question raised by Tone Andreassen's analysis of labour market statistics is whether disability might be an asset, particularly in certain employment sectors or occupations. Andreassen notes that employment of persons with disabilities is notably higher in the health and social sectors in Norway. Two contradictory speculations, among others, arise as possible explanations for this finding. The first is that the health sector may be particularly disability-producing. Other research suggests that long hours, occupational stresses, and high incidences of injury and strain can result in higher rates of injury-induced or chronic impairments in certain occupations. An alternative and/or additional hypothesis is that the health and social sectors offer more accepting work locations and organizational cultures for persons with disabilities. The greater availability of part-time jobs in these sectors in Norway and evidence of more positive employer attitudes and values towards hiring and retaining individuals with chronic health problems in this sector, compared to others, suggest that these factors may be particularly important in accounting for the over-representation of individuals with disabilities in these sectors. An additional interesting observation is that there is growing value in the health sector attached to employing individuals with chronic illnesses or impairments in patient education and patient support services, as educators to professionals, and as advisors on hospital-mandated user councils. Similarly, empowered users of health and social care have established some user-led agencies as non-profit enterprises that focus on independent living and personal validation. In such agencies persons with disabilities are valued as employees for their knowledge and lived experience. Andreassen cautions that such circumstances can produce "border sphere labour markets," offering more part-time or occasional work. Nonetheless, it appears that employment in disability organizations, on user councils, and as trainers and consultants in organizations is a unique area of employment, and possibly self-employment that has not been fully appreciated.

Several articles in this special issue further explore how globalization, neoliberalism and participation in waged employment affect individuals' identities and the capacity to claim full citizenship. Dustin Galer's article, "Disabled Capitalists: Exploring the Intersections of Disability and Identity Formation in the World of Work" examines the construction of identity through work using concepts of self-definition, cultural values of self-determination and the role of identity politics. Galer reflects on processes of self-discovery and discursive processes of identity formation based on interactions with others and experiences that can counter a dominant disabled identity, focusing on functional abilities and a sense of belonging. Interviews with a diverse cross-section of people with disabilities revealed the importance of mainstream ideals embedded within personal identity goals, individual backgrounds, and material circumstance, rather than ideological or politicized group identities. Findings also confirmed that participants see paid employment as central to their identity and challenge the notion of disability as a burden, locating it in social attitudes and economic processes, affirming their desire to contribute, achieve independence, and participate and belong to a larger community.

Jyothi Gupta's article, An Issue of Occupational (In) Justice: A Case Study, provides a critical analysis of how the Americans with Disabilities Act (ADA) does and does not address the challenges experienced by individuals as they navigate access to employment and accommodations in the workplace. Her article is framed by theories derived from Occupational science and therapy, including the Person-Environment-Occupation (PEO) model and concepts of occupational justice. The latter includes a commitment to policies and practices that assure all people have "the opportunities, resources and rights to engage in meaningful occupations to meet both intrinsic needs and societal expectations" (Whiteford & Townsend, 2011), with occupation interpreted in a broad sense that reflects the range of activities people engage in that influence their identity and sense of belonging. Gupta presents a fascinating case study of a high functioning individual who demonstrates resilience following an accident resulting in a significant acquired disability. Her interview with "Bonnie" demonstrates concepts of identity rupture and reconstruction, occupational disruption and workplace marginalization, all of which speak to the need for cultural and attitudinal change. Bonnie's ultimate employment as a disability consultant in a large organization provides additional challenges. Her professional role as a change agent related to policies on paper is accompanied by the challenges she faces obtaining appropriate accommodations to do the work. Gupta's article provides many insights, including the fact that employers and co-workers who have positive experiences with employees with disabilities are more likely to be proactive and accepting in the future, while being a change agent, by definition, creates friction and makes problems visible. The concept of occupational injustice is also important to appreciate, both in its broadest sense and as a concept that reinforces goals of equity and fairness.

Gillies' study of "University Graduates with a Disability: The Transition from University to the Workforce" provides insight into the experiences of highly educated individuals with disabilities whose early experiences in seeking employment and in the workforce are still unfolding. Recent university graduates, some with additional degrees, reveal the challenges most experience finding employment in their chosen field and commensurate with their education. Although other recent graduates face similar challenges, the transition to employment for persons with disabilities is far more complicated and precarious. Participants experienced structural and attitudinal discrimination. Both the practicalities of obtaining employment and identity management strategies were reflected in dilemmas about whether and/or when to disclose their condition, and concerns about the benefit of targeted employment (being hired as a person with disabilities) as opposed to being hired based on their qualifications alone. Although participants described their experiences at university as supportive and inclusive, it is also clear that more can be done by university personnel to better prepare students with disabilities for the transition to employment. One of the real risks Gillies describes is the circumstance of being "stuck in transition" — a risk that can have long-term consequences, resulting in unemployment, underemployment and exclusion.

MacGregor's analysis of "Citizenship in Name Only: Constructing Meaningful Citizenship through a Recalibration of the Values Attached to Waged Labor" provides the strongest interrogation of the value attributed to waged labour as the main criterion for full citizenship in Western capitalist societies. Her arguments include the fact that neoliberal expectations value only those workers who are characterized as independent, self-reliant and able to meet standards of productivity, and that given the close connection between citizenship and waged labor, these characteristics are then attributed to the 'valuable' citizen. Her analysis of how access to public transportation for individuals with disabilities is structured provides a concrete example of how a service designed to support inclusion can actually frustrate participation in the paid workforce, whether one needs daily, regular transportation at set times or the capacity to arrange transportation to meet changes in work schedules and personal needs. MacGregor states that "acknowledging a set of [citizenship] rights, but failing to identify the physical, institutional and attitudinal barriers in the exercise of those rights, renders them nonexistent and contributes to a withdrawal of the citizenship status. The issue then becomes whether citizenship is extended to people with disabilities in more than name only." The author's view is that the essentialist focus on waged work from a critical disability perspective allows an opportunity for recalibration; one that could include other forms of engagement such as household labour, caregiving, and participation in social, civil and political engagement. This restructuring interrogates concepts of burden and dependency and challenges the discourse of who, and what is valued in society.

This special issue concludes with a wide-ranging interview with David Onley, the Lieutenant Governor of Ontario. As the Queen's representative, the Lieutenant Governor has both a constitutional role (opening each session of Parliament, outlining the Government's plans in the Speech from the Throne, providing Royal Assent for bills to become law) and a community role, acting as the Province's official host to world leaders and diplomats, presenting honors and awards to outstanding citizens, and supporting social causes and attending hundreds of public events each year. In both roles, the Lieutenant Governor is highly visible and has the opportunity to influence others, both directly and indirectly. As the first Lieutenant Governor with a visible disability, David Onley is serious about his opportunity to advocate for people with disabilities, to engage Ontarians in conversation about accessibility and acceptance, and to provide leadership, both personally as a role model and by encouraging others to take a more active role in promoting full participation in workplaces and in public spaces. His interview with Carolyn Pletsch includes reflections on his own challenges in finding employment, the benefits of being supported and accepted in a workplace that helped him grow professionally and personally, and his reflections on what inclusion or full membership, in his words, means. The interview includes a discussion of how employers can be influenced positively through research on the business case which incorporates a realistic appraisal of the costs and benefits of employing persons with disabilities, and through personal and moral suasion — all of which address the importance of changing attitudes and perspectives. The interview also underscores the importance of multipronged, multilayered actions — including provincial legislation, the involvement of municipalities in implementing accessibility standards, the conduct and dissemination of compelling research, the involvement of the arts and media in making people with disabilities visible, and encouraging the involvement of all individuals who care for and care about this issue.

The learning involved in our experience developing this special issue as co-editors has been rich and rewarding, and while we are happy to share the results with you, we would be remiss if we did not indicate some topics that were not included or received limited attention in the articles that appear here. Among them are the following:

1. The crucial need for additional research, including longitudinal studies of individuals and workplaces, and the significant data gaps in national studies that limit our understanding of employment patterns and employment experiences for people with disabilities. These data gaps are particularly important since their presence affects the capacity to assess possible impacts of policy changes over time and to learn who benefits and who does not. Addressing data gaps and conducting and disseminating research on this topic are particularly critical as governments reduce the number and scope of surveys that include questions about disability.
2. The importance of understanding the interface between employment and disability for individuals in different circumstances — to incorporate gender, type of disability, age, education, race/ethnicity, geographic characteristics and service access in analyses and interpretation of findings.
3. In addition, it is important to go beyond crude measures of employment to include types of employment (voluntary and involuntary part-time work, precarious work) and the quality of work. Under-researched topics include self-employment and informal employment, which are likely to be common forms of engagement among persons with disabilities.
4. Institutional and policy responses to episodic disabilities.
5. Innovations and best practices in policy and practice. Effective processes for changing attitudes and workplace structures.

We look forward to seeing additional articles published on these and related topics that will continue the discussion of the need for, processes of, and benefits that derive from reconceptualizing the 'burden' of disability.