Working Bodies: Chronic Illness in the Canadian Workplace 9780773591813

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working bodies

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Working Bodies Chronic Illness in the Canadian Workplace edited by

Sh a r on-D a l e S t o n e Va lo r ie A . C r o o k s M ic h e ll e Owe n

McGill-Queen’s University Press Montreal & Kingston • London • Ithaca

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This book is dedicated to all Canadians living with chronic illnesses who want to have meaningful employment and engagement in the workplace.

© McGill-Queen’s University Press 2014 ISBN ISBN ISBN ISBN

978-0-7735-4377-5 (cloth) 978-0-7735-4378-2 (paper) 978-0-7735-9181-3 (ePDF) 978-0-7735-9182-0 (ePUB)

Legal deposit second quarter 2014 Bibliothèque nationale du Québec Printed in Canada on acid-free paper that is 100% ancient forest free (100% post-consumer recycled), processed chlorine free McGill-Queen’s University Press acknowledges the support of the Canada Council for the Arts for our publishing program. We also acknowledge the financial support of the Government of Canada through the Canada Book Fund for our publishing activities.

Library and Archives Canada Cataloguing in Publication   Working bodies: chronic illness in the Canadian workplace / edited by Sharon-Dale Stone, Valorie A. Crooks, Michelle Owen. Includes bibliographical references and index. Issued in print and electronic formats. ISBN 978-0-7735-4377-5 (bound). – ISBN 978-0-7735-4378-2 (pbk.). – ISBN 978-0-7735-9181-3 (ePDF). – ISBN 978-0-7735-9182-0 (ePUB)   1. Chronically ill – Employment – Canada. 2. Chronically ill – Canada – Economic conditions. 3. Chronically ill – Canada – Social conditions. I. Stone, Sharon Dale, 1955–, editor of compilation II. Owen, Michelle K., editor of compilation III. Crooks, Valorie A., 1976–, editor of compilation HD7256.C3W673 2014   331.5'970971 C2013-907747-2 C2013-907748-0 Typeset by Jay Tee Graphics Ltd. in 10.5/13 Sabon

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Contents

Figures vii Introduction: Chronic Illness in the Canadian Workplace  3 Sharon-Dale Stone, Valorie A. Crooks, and Michelle Owen pa r t o n e  

c o n f r o n t i n g a n d n e g o t i at i n g at t i t u d e s

Narrative Preface: Adam’s Story  29 Adam Gilgoff 1 Portrayals of Fibromyalgia and Paid Work: Too Sick to Work?  31 Margaret Oldfield 2 Including and Accommodating Youth with Chronic Illness and Childhood Onset Disability in the Canadian Workplace  51 Joan J. Versnel and Nancy L. Hutchinson 3 Navigating Chronic Injuries in the Workplace: Five Workers’ Experiences with Systems and Relationships  71 Theresa Aversa and Nicolette Carlan pa r t t w o  

p e r s p e c t i v e s o n a c c o m m o d at i n g c h r o n i c

illness

Narrative Preface: Julie’s Story   89 Julie Devaney 4 Employers’ Perspectives on Workplace Accommodation of Chronic Health Conditions  91 Rosemary Lysaght and Terry Krupa

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vi Contents

5 Supervisors’ Perspectives on Work Accommodation for Chronically Ill Employees  114 Vicki L. Kristman, William S. Shaw, and Kelly Williams-Whitt 6 Accommodation in the Context of Complex Chronic Illness  138 Melissa Popiel, Wendy Porch, and Le-Ann Dolan pa r t t h r e e  

experiencing chronic illness in the

workplace

Narrative Preface: Corinne’s Story  159 Corinne Stevens 7 Chronic Illness among Immigrant Workers in Canada: An Overview of Existing Knowledge  161 Iffath U.B. Syed 8 On Being a Princess and a Problem: Negotiating Attitudinal Barriers to Chronic Illness in Canadian Universities  177 Keri Cameron and Vera Chouinard 9 Chronic Illness and the Canadian Knowledge Worker: The Role of the Body and Embodiment in Shaping the Production of Academic Work 196 Valorie A. Crooks, Michelle Owen, and Sharon-Dale Stone pa r t f o u r  

epilogue

Narrative Preface: Andrea’s Story  213 Andrea Black 10 Epilogue  216 Sharon-Dale Stone, Valorie A. Crooks, and Michelle Owen Contributors 223 Index 229

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Figures

4.1 Approaches to workplace accommodation  92 4.2 Factors that contribute to accommodation of chronic illness in the workplace 95 5.1 Factors that influence supervisors’ abilities to support, recommend, or coordinate job accommodations for chronically ill employees 119

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Introduction: Chronic Illness in the Canadian Workplace s h a r o n - d a l e s t o n e , va l o r i e a . c r o o k s , a n d michelle owen

With the growth of disability studies in recent decades, much has been written about the lived experience of disability in the workplace (e.g., England 2003; Roulstone, Gradwell, et al. 2003; Shier, Graham, and Jones 2009; Wilton and Schuer 2006). The lived experience of chronic illness, however, is often qualitatively different from that of disability, and so research about the latter is not necessarily relevant. In brief, the most significant difference is that chronic illness typically entails periods of disability due to symptom fluctuation or exacerbation, among other factors, interspersed with periods of feeling and appearing able-bodied. The often episodic and fluctuating nature of the chronic illness experience can lead to a wide variety of challenges that those with stable impairments do not generally face. Thus, there is a need for research that squarely focuses on the chronic illness experience and, given the central place of paid work in the lives of adults, recognizes the unique ways in which chronic illnesses can complicate the work experience. This need is all the more important given the rapid population aging in many countries, including Canada, and given that chronic illnesses become more prevalent with age (Denton and Spencer 2010). According to Statistics Canada (2012b), “the number of seniors aged 65 and over increased 14.1% between 2006 and 2011 ... Canada’s working-­age population is also growing older. Within the working-age group,

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42.4% of people were aged between 45 and 64, a record high ­proportion.” The issues that authors in this collection discuss are ­important and timely in Canada, which serves as our geographic focus, and in other countries facing similar challenges related to aging populations and the prevalence of chronic illness. Working Bodies is intended to contribute toward understanding experiences of navigating Canadian work environments while negotiating the consequences of living with chronic illness. Though we focus exclusively on Canada, there is some evidence that chronically ill workers and their employers in other national contexts share the experiences we report on in this collection (e.g., see Vickers 2001 on the Australian context). Acknowledging this, we draw on international research in this introduction. Nevertheless, we believe that our focus on Canadian workplaces and work environments underscores the significance of place and context regarding employment for those with chronic illnesses and what employers do, and allows us to unambiguously identify ways in which experience can differ, even in the same location. chronic illness defined

It can be tricky to define chronic illness because the term is routinely used to describe a wide range of conditions that can manifest in a variety of ways (Sidell 1997; Taylor, Gibson, and Franck 2008). Different disciplines (e.g., anthropology, geography, medicine, nursing, psychology, and sociology) also tend to focus on different aspects of chronic illness, and so there is not a unitary definition. Nevertheless, very broadly, chronic illnesses: have a sudden or gradual onset; are incapacitating or not; • may or may not have an effect on life span; • have an uncertain, progressive, or unchanging trajectory; • result in episodically problematic and fluctuating or constant symptoms; • result in mind and body symptoms that are visible or invisible (Donoghue and Siegel 1992; Vickers 2001); and • are diagnosed easily or through a lengthy process of elimination or exclusion that can sometimes result in a contested diagnosis (Crooks, Chouinard, and Wilton 2008; Moss and Teghtsoonian 2008). • •

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Diabetes, osteoarthritis, clinical depression, multiple sclerosis, bipolar disorder, some forms of cancer, chronic migraines, carpal tunnel and other muscle injuries, myalgic encephalomyelitis (also known as chronic fatigue syndrome), and HIV/AIDS are all examples of relatively common diseases, disorders, and syndromes that meet these characteristics. Most of these characteristics relevant to the experience of chronic illness are also relevant to the experience of disability, and sometimes the terms chronic illness and disability are used interchangeably. From a disability studies perspective, however, it is important to reserve the term disability to refer to the experience of social oppression and its disabling outcomes in order to signal that disability is relational, something produced as a consequence of the interaction between the individual and the environment (Barnes and Mercer 2010; Thomas 2007). The mind/body differences produced by chronic illnesses and the ways in which they change over time may result in experiences of disablement and disabling outcomes, which is where the connection between disability and chronic illness rests (Crooks, Chouinard, and Wilton 2008). In contrast, chronic illness refers to bodily and/or cognitive experience. While chronic illness may have disabling consequences (e.g., the physical environment may not be set up to allow the individual to have easy access or perform valued activities, or the social environment may promote discriminatory attitudes), these consequences should not be confused with the chronic illness itself. At a very basic level, two fundamental characteristics are common to all chronic illnesses: they “persist ... and require some level of health care management across time” (Carrier 2009, 2). These characteristics are not necessarily true for disability. To further distinguish chronic illness from disability, it is useful to consider Moss and Dyck’s (2002) point that living with chronic illness often results in being both healthy and sick at the same time. They elaborate: [The] capricious movement inherent in chronic illness sets up individuals to experience both vigor and lethargy, remissions and flare-ups, “good days” and “bad days” – sometimes months apart, sometimes within minutes of each other, sometimes in tandem. For most chronic illness, recurrence of sickness or health is indeterminable ... for the most part chronic illness is laced with uncertainty. (14–16)

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Perhaps because chronic illnesses are so variable in presentation and course, there are no reliable statistics about their overall prevalence in Canada. For example, Statistics Canada’s 2001 Participation and Activity Limitations Survey (PALS), which does not distinguish between chronic illness and disability but does collect statistics about activity limitations, reported that 75 per cent of disabled people in the labour force experience chronic pain ­(Williams 2006, 17). Meanwhile, Statistics Canada’s Canadian Community Health Survey (CCHS) uses a checklist of conditions that are defined as chronic if they “are expected to last or have already lasted 6 months or more and ... have been diagnosed by a health professional” (Gilmour and Park 2005, 26). Yet as Denton and Spencer (2010, 12) note, this checklist varies from one Statistics Canada survey to another, and thus does not offer a reliable glimpse of the occurrence of chronic illness in Canada. Prevalence rates aside, the differing characterizations of chronic illness in these two national surveys highlight the slippery nature of this concept. experiencing chronic illness in canada

Delineating a typical chronic illness experience in Canada is not possible. A wide variety of conditions could conceivably be counted as constituting chronic illness (Mirolla 2004; Paterson 2000). An individual’s social location (e.g., gender, race, age, sexuality) also necessarily affects the experience of chronic illness, and aspects of social location intersect to produce different experiences (Hankivsky and Christoffersen 2008). In the Canadian context, research has examined the experience of specific chronic illnesses, such as arthritis (e.g., Gignac, Sutton, and Badley 2007; Moss and Dyck 2002), asthma (e.g., Loignon, Bedos, et al. 2009), chronic respiratory illness (e.g., Goodridge, Hutchinson, et al. 2011), fibromyalgia (e.g., Chow 2008; Crooks 2007a), gastrointestinal disorders (e.g., Fletcher, Schneider, et al. 2008), HIV/AIDS (e.g., Adam and Sears 1997; Ferrier and Lavis 2003), mental illness (e.g., Bahm and Forchuk 2009; Noiseaux, Tribble St-Cyr, et al. 2010), myalgic encephalomyelitis (e.g., Moss and Dyck 2002), and multiple sclerosis (e.g., Driedger, Crooks, and Bennett 2004; Dyck and ­Jongbloed 2000). Much of this research focuses on women’s experiences, reflecting the fact that women generally experience more ill health and higher rates of chronic illness than men (Segall and Fries

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2011). From a feminist perspective, it seems clear that this is at least partly related to women’s subordinate position in a patriarchal society, along with traditional gender roles that give them responsibility for the health and well-being of family members (CSDH 2008; Owen 2007). chronic illness in the workplace

For those who live with chronic illness, the indeterminate, unpredictable nature of symptoms such as pain and fatigue can make it especially difficult to know how to plan for activities, whether short- or long-term. Consequently, individuals with chronic illness can never be certain whether they will be able to meet the demands of the workplace on any given day. Moreover, this uncertainty can be stressful by challenging an individual’s identity as a reliably productive member of society. As Dyck and Jongbloed (2000) found in a study of the employment experiences of women with multiple sclerosis, “the paid workplace is not simply a physical environment to be negotiated through modification of its features or the use of assistive devices, but it is one imbued with social meanings about performance” (344). They found women expressed concerns about “maintaining or reconstructing a valued identity” (345) in light of their uncertain ability to be productive in paid labour. Stone (2003) similarly found that identity concerns were prominent in the minds of permanently injured workers, many of whom acquired chronic illnesses as a result of workplace duties. Regarding those with mental illness, Stuart (2006) notes that: Work is a major determinant of mental health and a socially integrating force that is highly valued. No single social activity conveys more of a sense of self-worth and social identity than work. To be excluded from the workforce not only creates material deprivation but also erodes self-confidence, creates a sense of isolation and marginalization and is a key risk factor for mental disability. (522) Hall and Wilton (2011) offer similar comments regarding the significance of paid employment for disabled people, including those with mental illness. Indeed, social and economic citizenship is often

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connected to employment. Discussing disability more generally, Prince (2009) writes that the concept of citizenship encompasses multiple elements, including economic integration: “Citizenship as economic integration refers to participation and mobility within the paid labour market ... citizenship is associated with employment, with the individual portrayed as a productive member of the economy” (18, 23). Clearly, there is a great deal at stake when considering participation in paid labour for those who experience disability. Unfortunately, when compared to members of the general workforce who are not managing chronic illnesses, chronically ill individuals have more difficulties getting jobs, and tend to face difficulties returning to work after taking a prolonged sick leave (Baanders, Andries, et al. 2001). When individuals with chronic illness manage to obtain paid labour, a wide variety of issues become relevant as they navigate the workplace environment. These issues are highlighted throughout the chapters of this book. d i s c l o s u r e o f i l l n e s s s tat u s

Munir, Leka, and Griffiths (2004) distinguish between two different levels of chronic illness disclosure in the workplace: partial self-­ disclosure (“employees informing line managers about the presence of a chronic illness”) and full self-disclosure (“employees informing line managers how that chronic illness affected them at work”) (1,397). There are both risks and benefits associated with disclosure in the workplace. The decision about whether to disclose a chronic illness is complicated by a variety of factors including potential stigma, the visibility of symptoms and their level of intrusiveness, the availability of and access to both organizational and social support, and security of employment (Dyck 1999; Greene 2000; Moss and Dyck 2002; Munir, Leka, and Griffiths 2004; Vickers 1997, 2001). Below, we summarize each of these factors. Stigma Given that illness in Western societies is generally considered “abnormal,” anyone who discloses a chronic illness faces the possibility of being regarded negatively. By not disclosing illness status, an individual may pass as “normal” and thereby avoid differential treatment. This may be especially attractive for those coping with a mental

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i­llness, given that mental illness is especially stigmatized (­Goldberg, Killeen, and O’Day 2005; Krupa, Kirsh, et al. 2009; Shankar, ­Barlow, and Khalema 2011). However, contrary to conventional wisdom that passing for normal is always more desirable than being recognized as different (see Goffman 1963), not everyone wants to blend in to be thought of as just like everyone else (Linton 1998). Visibility of Symptoms Many symptoms of chronic illness, such as fatigue, pain, and cognitive difficulties, are not visible to others. When onlookers are unable to see evidence of illness, the individual needs to decide whether to bring attention to problematic symptoms or pass as unaffected by illness. With disclosure, the individual risks stigmatization, but may benefit from access to accommodations and not feeling the need to hide important aspects of identity (Crooks, Chouinard, and Wilton 2008). Intrusiveness of Symptoms Symptoms may or may not interfere with an ability to perform workplace duties, depending on how constant and severe they are. If they do not interfere and are also invisible, the individual may not feel the need to disclose. Related to this issue of the intrusiveness of symptoms is the issue of identity: particularly when symptoms are not visible or experienced as overly intrusive, someone with chronic illness may not self-identify as either ill or disabled, which reduces their motivation to disclose their illness (Crooks, Chouinard, and Wilton 2008; Larson 2009). Availability and Access to Support Disclosing chronic illness may render an individual eligible for organizational support, such as access to accommodations (Driedger 2003; Moss and Dyck 1996). Caring co-workers and superiors may be happy to offer social support if they are aware it is needed. Given the stigma attached to chronic illness, however, disclosure may also render an individual the subject of discriminatory attitudes. There is evidence, for example, that when co-workers learn that someone has a mental illness, the ill person faces discrimination and becomes

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socially marginalized (Goldberg, Killeen, and O’Day 2005; Stuart, 2006; cf. Krupa, Kirsh, et al. 2009). Security of Employment There is considerable Canadian evidence that shows disclosing chronic illness can make one vulnerable to job loss (e.g., Moss and Dyck 2002; Williams 2006). Based on responses to Statistics Canada’s 2001 PALS survey, and writing about disability in general rather than chronic illness specifically, Williams (2006) reports, “employer perceptions of a person’s disability may affect whether they are hired, get promoted, receive access to training, or remain employed” (18). She finds that over 35 per cent of disabled workers were afraid of being considered disadvantaged at work, close to “11% felt they had been refused employment because of their disability in the last five years,” and close to “7% felt that they had been fired from their job for this reason.” Disturbingly, statistics based on the 2006 PALS survey showed an increase in discriminatory attitudes. For example, according to the later survey, 25.5 per cent of unemployed disabled people and 8 per cent of employed disabled people believed they had been refused a job on account of discrimination in the previous five years (Statistics Canada 2008, 21). Stuart (2007), meanwhile, finds that the employment prospects for Canadians with mental illness are particularly dismal. Altogether, then, people with chronic illness appear to have good reason to be leery about disclosing their status. Participation in Social Relationships Chronic illness typically involves symptoms such as fatigue and pain, which make it difficult if not impossible for some individuals to participate in social relationships. As Whittemore and Dixon (2008) succinctly explain, the outcomes of living with chronic illness can include “impaired physical functioning, limitations in activities of daily living, loss of independence, pain, emotional distress and changes in self-identity” that subsequently result in “a major impact on all aspects of an individual’s life, affecting physical, psychological, social and vocational functioning” (178). Similarly, Laruna and Malerud (2007) reviewed research about individuals with chronic fatigue syndrome to find that lack of energy meant they were commonly unable to participate in social relationships. Typically, those

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who remained in the labour force eliminated non-work activities in order to conserve energy. Also, their ability to participate in social relationships was often compromised due to reduced ability to use essential communication skills such as listening, speaking, and writing (see also Marris 1996; Moss and Dyck 1999, 2002). As Driedger, Crooks, and Bennett (2004) point out, “feeling [socially] out of place in the paid work force is a reality of everyday life” for those with chronic illness and “devastating” for those who will likely not work in the near future (124). a c c e s s t o w o r k p l a c e a c c o m m o d at i o n s

Despite the existence of Canadian legislation – for example, the Canadian Human Rights Act (CHRA) requires federal employers to make reasonable workplace accommodations for disabled workers (Department of Justice 2012), and most other workers are covered under provincial legislation such as the Ontario Human Rights Code – workplace accommodations are unevenly available across the country. Accommodations can vary and may apply to the workspace itself (e.g., automatic door openers), work schedules (e.g., flexible work hours), and/or office equipment (e.g., computer speech recognition software) (Crooks 2007b). Statistics Canada reports, however, that 25 per cent of disabled workers surveyed in 2001 were not able to get their requests for accommodation granted, even though they most commonly requested modified work hours and modified duties (Williams 2006, 21). As with the statistics about increased discrimination discussed above, the statistics for the 2006 survey likewise indicate a worsening situation: on average, 35 per cent of workers were unable to have requests for job redesign (modified duties) accommodated (Statistics Canada 2008, 19). Although human rights legislation allows employers to forego granting accommodations on the grounds that doing so would require “undue hardship” or even “unmanageably high costs,” there is evidence that the average annual cost of accommodation per Canadian worker would be less than $500 (Prost and ­Redmond 2005). Part of the problem contributing to gap between the legal mandate of human rights legislation and the practice of granting ­accommodation may be that legal concepts are vague. Other contributing factors may include: employers’ and employees’ varying awareness of legal provisions; employees’ willingness to risk

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r­ elations with employers (Cleveland, Barnes-Farrell, and Ratz 1997) or co-workers (Colella 2001) by seeking accommodations; levels of institutional commitment to “diversity” (Spataro 2005); and “corporate culture” (Schur, Kruse, et al. 2009). With specific reference to workers with chronic illness, Munir, Jones, et al. (2005) find that often generic illness symptoms (for example, fatigue) – rather than the specific nature of the illness itself – result in the need for workplace accommodations. They also find that physical work adjustments are typically made available to employees earlier than cognitive work adjustments and social support, mostly likely because they are “tangible” and “easily identified.” Their research confirms the above reports on accommodations for disabled workers generally: accommodation can only be granted after the employee discloses illness, and employer perceptions and knowledge greatly influence the decision about whether to grant an accommodation. As well, Munir, Jones, et al. (2005) point out that a large number of individuals manage more than one chronic illness, which increases the risks of having a work limitation and heightens the need for appropriate accommodation. the canadian workplace environment

When the experiences of workers with chronic illness are placed within the larger context of the contemporary socio-economic environment, a more nuanced understanding of the systems and structures they are up against becomes clear. To state the matter starkly, even if issues related to an individual’s health were not a concern or even if there were no stigma attached to chronic illness, workers and potential workers with chronic illness must still compete with illness-free and able-bodied workers for jobs. There is, however, a serious shortage of secure and well-paid available jobs in Canada. Canada, like most post-industrial countries, is transitioning from an economy based on manufacturing and resource extraction (the primary sector) to one based on services (the tertiary sector). The well-paid and secure jobs that characterized the Fordist era of industrial production are quickly disappearing, so that most Canadian workers can now expect to have several different careers over the course of their lives and for the most part cannot expect to be paid the relatively high wages given to unionized primary-sector w ­ orkers

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during the middle decades of the twentieth century (Kalleberg 2009). Rather, we are in the era of the “McJob”: part-time, shortterm, and poorly paid work in the service sector with no fringe benefits ­(Lindsay 2005). It is not only the service sector that has seen the growth of the McJob. What is left of the primary sector is also turning to a “justin-time” workforce more often, with workers hired on a temporary, as-needed basis and laid off when production demands slow down (Vosko 2006). As of December 2011, 33 per cent of Canadians over age fifteen were not in the labour force, while of those counted as labour force participants, 19 per cent worked part-time and 7.5 per cent were unemployed (Statistics Canada 2012a). Increasingly, workers of all kinds are offered only insecure work contracts, a situation which is described as “contingent work” (Facey and Eakin 2010) or “precarious employment” (Tompa, Scott-Marshall, et al. 2007; Scott-Marshall and Tompa 2011; Vosko 2006). As Facey and Eakin (2010, 327) point out, there is nothing new about contingent work, and in Canada it has long been the norm among new immigrants and in industries such as construction, agriculture, and domestic work (see Vosko 2006). However, over the past several decades, it has become more and more difficult to find secure, full-time employment in any occupational category. ­Malenfant, LaRue, and Vézina (2007, 828) studied the career paths of fifty-two Québécois who had worked intermittently for at least two years, to find that working conditions had gradually deteriorated since the early 1990s. Close to one third of those interviewed had at one point held a steady job (in some cases, for twenty-five years), but lost their jobs because of economic change, illness, or a desire to focus on family life (notably, only women gave up jobs for this reason). When they attempted to find another paid job, they could find only low-quality jobs with poor working conditions: “jobs were associated with low salaries, weak or non-existent fringe benefits and protection, and health-threatening tasks” (831). Indeed, the Canadian work environment of the early twenty-first century can increasingly be characterized in terms of offering precarious employment. Malenfant, LaRue, and Vézina (2007, 832) argue that job precariousness undermines workers’ psychological and physical wellbeing. Similarly, Lewchuk, Clarke, and deWolff (2008) show that having poorer health is associated with workers who are ­uncertain

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about their prospects for future employment, who are actively searching for new employment, and who have limited support. Scott-Marshall and Tompa (2011), meanwhile, carefully delineate conditions that can lead to adverse health outcomes given precarious employment. Within the context of the larger Canadian socio-economic environment, workers with chronic illness must compete for jobs or prove themselves worthy of the jobs they have. Just as there are no reliable statistics regarding the prevalence of chronic illness, however, there are no reliable statistics regarding employment rates for those with chronic illness. An approximation of the scope of the problem can come from considering that, according to the 2006 PALS data (Statistics Canada 2008, 7), disabled people were less likely than nondisabled people to be employed (51 per cent versus 75 per cent). In considering this, it is useful to keep in mind that many disabled people have constant impairments and are able to know what to expect regarding their abilities, whereas people with chronic illness typically do not know from day to day whether they will be able to engage in any given activity. Thus, those with chronic illness are particularly vulnerable to employment insecurity in a job market that is precarious for virtually all workers. acquiring chronic illness in the workplace

In addition to the problem of employment insecurity, all workers are potentially vulnerable to acquiring chronic illness as a result of workplace participation. For example, Smith and Bielecky (2012) find that increasing psychological demands in the workplace lead to an elevated risk of depression. Other research shows that workrelated musculoskeletal pain and chronic back pain are on the rise (Jackson 2009, 105), while musculoskeletal disorders constitute more than half of all work injuries in Canada (Sullivan and Cole 2002, 331). Statistics Canada (2003) reports that more than half of all repetitive strain injuries are acquired as a result of work, and particularly attributes “work stress deriving from a fast work pace, role ambiguity, worry and monotonous tasks” to the onset of these injuries. Women are also more likely than men to sustain repetitive strain injuries at work due to the nature of the jobs they are most likely to have (see also Kome 2006). Messing and de Grosbois (2001) sum

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up the relevant issues regarding the prevalence of such injuries and other types of chronic illnesses among female workers: Women suffer many problems related to their work: musculoskeletal problems from repetitive work, constrained work postures, overuse, and tools and work sites ill-adapted to their size and shape; stress leading to heart disease and psychological distress from multiple demands, sexual and sexist harassment, lack of job control, emotion work and job demands incompatible with pregnancy, nursing and family life; cancers, skin disease and toxic effects of chemical exposures such as those in hairdressing, factory work, hospitals, laboratories, cleaning and farm work; reproductive problems such as dysmenorrhea, irregular cycles and difficult pregnancies associated with exposures to chemicals, ergonomic stresses and difficult work schedules; violence from clients and co-workers; eyestrain from meticulous work and the requirement to work without error, and exhaustion from overwork, inadequate rest breaks and repetitive work. (126) Considerable industry-specific research examines the acquisition of chronic illness. For example, Cole, Koehoorn, et al. (2009) show that working conditions for health care workers can adversely affect mental health and lead to musculoskeletal disorder. Over a five-year period, they found that up to 14 per cent of health care workers were treated for mental health conditions and up to 44 per cent were treated for musculoskeletal disorders. Zeytinoglu, Seaton, et al. (2005) show that for women who work in retail and consumer service, the stress associated with part-time and casual work along with a poor psychosocial work environment often leads to repetitive strain injuries and migraine headaches. In the hotel industry, meanwhile, Liladrie (2010) shows that the immigrant women of colour who predominantly work as housekeepers experience “a high degree of pains and injuries” (57). overview of this collection

Working Bodies examines the experiences of negotiating chronic illness in the Canadian workplace. The contributors in the chapters that follow share multiple perspectives from several stakeholder groups, including workers and employers. The collection is ­organized into

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three main parts, along with an epilogue; each begins with a narrative preface in which an individual with chronic illness reflects on aspects of her or his experiences in the Canadian workplace. The brief, personal narratives give voice to the lived experiences of the issues covered in this collection and allow for an understanding of personal context in a way that the research-based chapters do not. Part I foregrounds the roles attitudes toward those with chronic illness in the workplace play. Part II focuses on issues that surround the accommodation of chronically ill workers, and part III examines the unique issues faced by particular groups of workers in particular workplaces. The epilogue not only summarizes and discusses what can be learned from this collection as a whole, but also makes recommendations for creating Canadian workplaces that are friendlier to those with chronic illness. Part I: Confronting and Negotiating Attitudes Part I opens with a narrative from Adam Gilgoff, who reflects on how his life has changed since he developed a disabling chronic illness. His narrative illustrates that it is not only others’ attitudes toward chronic illness that can cause disabling outcomes, but also an individual’s internalized attitudes. In chapter 1, Margaret Oldfield examines messages that people with fibromyalgia encounter regarding their ability to maintain paid employment. She examines problematic attitudes embedded in websites that offer advice about maintaining employment. In her analysis, she suggests that if people with chronic illness are not employed, it may be because of messages embedded in information about living with chronic illness, such as the implicit message that chronic illness makes workplace participation deeply problematic. In chapter 2, Joan J. Versnel and Nancy L. Hutchinson examine the employment situation for youth with chronic illness or childhood onset disability, with a focus on how prepared they are (or are not) for the transition from school to work. Based on interviews with youth and other key informants, they find that the need to negotiate accommodations for episodic impairments is a never-­ending process, yet youth with chronic illness are generally ill prepared to engage in the self-advocacy required in most workplaces. In chapter 3, Theresa Aversa and Nicolette Carlan focus on the experiences of individuals who develop chronic illness as a result of

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workplace injury. They interviewed five such individuals and found that the attitudes they had to confront and negotiate could be as debilitating, if not more so, than the experience of impairment. Part II: Accommodating Chronic Illness Part II focuses squarely on the issue of workplace accommodation. In the narrative that opens this part of the collection, Julie Devaney reflects on her work as a graduate student. She draws attention to the issue of whether or not to ask for accommodations and what happens after making such a request. In chapter 4, Rosemary Lysaght and Terry Krupa provide a broad overview of issues that employers must consider as they seek to accommodate the needs of workers with chronic illness and provide a harmonious work environment. They identify many challenges associated with the process and offer a conceptual model to illustrate the complexity of the issues involved. In chapter 5, Vicki L. Kristman, William S. Shaw, and Kelly Williams-­Whitt complement the previous chapter with a close consideration of factors that influence a supervisor’s ability to offer job accommodations. They also make recommendations for improving job accommodation efforts. In chapter 6, Melissa Popiel, Wendy Porch, and Le-Ann Dolan discuss the perspectives of the employee and employer as each moves through the processes of hiring and negotiating accommodations after being hired. They show how these processes change over time, and conclude with recommendations for policy development, the provision of resources, and future research. Part III: Experiencing Chronic Illness in the Workplace Part III examines the workplace experiences of particular worker populations with chronic illness. Corrine Stevens begins this part with a narrative about the ways in which the traditional teachings of the Cree people guide her in her work as a family therapist, which leads her to incorporate her experience of chronic illness into her work. In chapter 7, Iffath U.B. Syed reviews issues immigrants with chronic illness face as they attempt to integrate into the Canadian workplace. Her focus is on understanding how the experience d ­ iffers

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according to cultural background, employment background, and gender. Syed looks at three case studies, with each focused on a different aspect of immigrant experience. She concludes with a discussion of the significant knowledge gaps and data challenges that remain. In chapter 8, Keri Cameron and Vera Chouinard explore challenges in dealing with attitudinal barriers to inclusion in academia from the perspectives of a female student with chronic pain and a chronically ill female professor. Their discussion highlights the significance of gender, the (in)visibility of impairment, and positioning in academic relations of power. Finally, in chapter 9, we draw on the findings of our research with Canadian academics with multiple sclerosis to argue the need for an embodied view of the production of academic work. We focus on how the chronically ill academics we interviewed negotiate the socio-spatial workplace in the face of systemic barriers and enablers, and discuss various ways of conceptualizing the working body. Part IV: Epilogue This final section opens with a narrative from Andrea Black about her difficulties with combining paid employment and living with fibromyalgia. Black’s narrative is particularly interesting given the analysis Oldfield offers in chapter 1, where she suggests that people with fibromyalgia are not necessarily given appropriate support for remaining in the workplace. Following Black’s narrative, we draw together the multitude of issues addressed by the contributors to comment on commonalities and differences across diverse experiences. In doing so, we consider pressing knowledge gaps and important avenues for future research. conclusion

As editors, we are acutely aware that there is precious little research about experiences of chronic illness in the Canadian workplace. We have worked to identify those actively involved in researching this area, and in this collection we bring together examples of contemporary scholarship. Given that this volume is the first of its kind, we hope that it gives readers a well-rounded introduction to the multitude of issues to consider, provides food for thought, and encourages

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future scholarship. We further hope that those who live with chronic illness while engaging in paid employment find that the research presented here articulates and/or is useful for making sense of their own experiences. In helping to make this edited collection possible, we wish to acknowledge the research assistance of Lisa Brunner (who helped with literature reviews), Mary Choi (formatting), Rebecca Whitmore (references checks), and Cristina Temenos (inserting cross-references to other chapters). We are also grateful to the Faculty of Social Sciences and Humanities, Lakehead University, for a generous contribution towards costs associated with publication.

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Narrative Preface: Adam’s Story adam gilgoff

In September 2009, I was unemployed and just starting to develop a private tutoring business. I biked around Vancouver and met with students in their homes and at cafes, all the while searching for steadier employment. Then, one Sunday afternoon on my way out to lunch, a parked driver threw open his door as I biked past. I collided with the door and flew out into the road. Initially, I thought I had just a minor injury: a scraped elbow and a slight headache. But as the weeks went on I started to realize that I could no longer carry things without pain in my arms, I couldn’t sit in front of my computer without neck, back, and arm pain, and, most importantly at the time, I couldn’t ride my bike. My tutoring business suffered. I was now at the whim of public transit, and as a result could not see as many students in a day. The injury also affected my search for employment: I had previously worked in a bookstore, but I could no longer lift boxes of books. I could not apply for restaurant or construction jobs (and as it was just before the 2010 Winter Olympics in Vancouver, both industries were some of the few still hiring), and I could hardly sit in front of the computer to search for listings. When I finally found work, it was for a private tutoring company. While the job did not require use of my arms in the way that food service or construction would have, I still needed to sit and use a computer for much of the day. By the time I got home each evening, I was typically sore and unable to spend more time on the computer pursuing some of my other interests, such as developing a writing career or learning to program.

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I am once again searching for new employment, and while I’m not looking at manual labour anymore, I still need to keep my long-term injury in mind. I know that any job in front of a computer will leave me needing to stretch for upwards of an hour after work, and that I will face not entirely friendly curiosity as I decline to help people with minor carrying tasks around the workplace. As an otherwise fit and healthy young male, there are certain expectations around what I will be capable of and willing to do in the workplace – not only from those around me but also from within myself. With my injury now entering its fourth year, I need to rethink my expectations about the future. I will likely never rock climb, never travel and work on farms (through the Willing Workers on Organic Farms program, for example) – there’s a whole list of things that, once firmly part of my future plans, I will now have to reconsider. My injury has not necessarily left me unable to find work or dramatically impacted my ability to make a living, but it has most certainly shifted my perspective on the future.

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1 Portrayals of Fibromyalgia and Paid Work: Too Sick to Work? margaret oldfield

Fibromyalgia (FM), which can produce “invisible” symptoms such as widespread pain, sleep problems, and confusion, is a chronic illness that affects 440,000 Canadians. Most of those with FM are women (80 per cent), most of whom (65 per cent) are between the ages of forty and sixty-four. Many people with FM leave the workforce, but almost half of Canadians with FM (44 per cent) remain in paid employment (Statistics Canada 2010). Findings from quantitative research show that, for people with FM, personal health and illness beliefs are strongly associated with outcomes, including employment-related outcomes. For example, van Ittersum, van Wilgen, et al. (2009) found that people with FM believed the chronic condition would compromise their daily lives. Among women with FM, Kurtze, Gundersen, and Svebak (2001) found that an individual’s perception of her physical capacity to work best predicted whether or not she was employed. We need to know more about why people with FM decide to leave or stay in paid employment, and in this chapter I intend to contribute to an understanding of factors that may influence the decision-making process. I came to the research presented in this chapter through my own experiences of FM. After my diagnosis almost twenty years ago, I participated in a variety of FM rehabilitation programs and thoroughly enmeshed myself in the FM self-help movement. While participating in rehabilitation programs, I observed that other participants (all female) tended to use the same phrases to describe their experiences of FM, and that these phrases recurred in the self-help books of the

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time. One example was: “When I wake up, I feel like I’ve been hit by a truck.” I began to suspect that this talk was part of a “FM culture” in which we all seemed to be enmeshed. Five years after my own diagnosis, I decided to distance myself from this FM culture. Slowly, over the course of the next decade, my FM-related impairments receded. I realized that there was a need to investigate the ways in which available information might influence perceptions and experiences of FM, and how this may in turn influence employment outcomes. FM is a contested illness in the sense that there is widespread scepticism about whether it is a “real” illness. Researchers and physicians debate whether FM has a psychogenic or bodily cause (GhazanShahi, Tawheed, et al. 2012; Wolfe 2009). Regardless, physicians tend to report insufficient knowledge about FM (Hayes, Myhal, et al. 2010). There is, however, a wealth of information available online, and women often turn to the Internet for information about chronic illness (Crooks 2006). In this chapter, I present findings from a critical discourse analysis (Fairclough 2003; Lazar 2005) of selected online material about engaging in paid work while living with FM. My purpose is to highlight messages about working with FM that are aimed at those who have the illness, in an attempt to trace where beliefs about working with FM are likely to come from. f m i n t h e w o r k p l a c e : w h at t h e e v i d e n c e s h o w s

As discussed in the introductory chapter of this book, there are numerous advantages to remaining employed when living with chronic illness. Employment appears to help people with FM avoid significant deteriorations in health status over time (Rakovski, Zettel-­Watson, and Rutledge 2012). Research shows that women with FM value their employment and see it as a fundamental part of their identity and enjoyment of life (Henriksson, Liedberg, et al. 2005; Löfgren, Ekholm, et al. 2006). Work gives them a feeling of being a useful member of society whose contribution is appreciated. Work also provides social relationships, daily routine, and economic independence (Liedberg and Henriksson 2002; Henriksson, Liedberg, et al. 2005; Löfgren, Ekholm, et al. 2006). Women with FM who remain in the workforce report spending less time managing pain or negative emotions, and have more satisfaction with their life situation than women who have left their jobs (Liedberg, Hesselstrand, et al. 2004). This finding is similar to reports of people managing other

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chronic illnesses, as discussed in chapters 3 and 6 of this volume. Being appreciated by supervisors and co-workers is also important for remaining at work (Henriksson, Liedberg, et al. 2005). For people with FM, there are numerous disadvantages associated with leaving employment. Those who leave work lose their professional identities and feel isolated from others (Rakovski, Zettel-­ Watson, et al. 2012). Without work as a distraction, women with the condition are likely to focus more on their health problems ­(Liedberg and Henriksson 2002). It is not surprising, then, that leaving paid employment does not necessarily improve one’s health, and can in fact worsen it. In a longitudinal study of women with FM, Wigers (1996) found that collecting a full disability pension predicted negative health outcomes (pain, lack of energy, and lack of work capacity) among people who had similar levels of symptom intensity at the beginning of the study. Wigers concluded that granting lifelong disability pensions to people with FM may do them a disservice. People with FM describe multiple ways in which they combine FM and paid work. Generally, their strategies fall into four categories. First, they may prioritize paid work over other activities (Crooks 2007; Sim and Madden 2008) and reduce their leisure activities to allow for more time to rest before workdays (­Liedberg and ­Henriksson 2002). Second, they may use self-care strategies, including exercise, relaxation, avoiding unnecessary stress, and enjoying pleasures (Löfgren, Ekholm, et al. 2006; Werner, Sissel Steihaug, et al. 2003) to enable them to continue to work. Third, they may negotiate adjustments to their work schedules, such as taking breaks, reducing work hours, starting later in the day, varying work hours from day to day ­(Henriksson, Liedberg, et al. 2005), taking a day off without pay or using holiday pay, and working from home (Liedberg and ­Henriksson 2002). They often move to flexible work hours, modify the type of work they do, and even change occupations (­Rakovski, Zettel-­Watson, et al. 2012). Fourth, they may adjust their work environments by, for example, getting ergonomic chairs and tables (Liedberg and Henriksson 2002) or alternating work positions and tasks (Henriksson, Liedberg, et al. 2005; ­Löfgren, Ekholm, et al. 2006). Negotiating changes at work requires support not only from supervisors and co-workers, but also at higher levels of the organization (Liedberg and Henriksson 2002; see also Lysaght and Krupa in chapter 4 of this volume). In addition, working for the same

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employer for a long time makes it easier to negotiate workplace accommodations (Henriksson, Liedberg, et al. 2005). Nonetheless, as discussed in the introduction, negotiating such accommodations requires disclosing impairments, which not all employees may be willing to do. Even if people with FM disclose their often-invisible impairments, disclosure does not necessarily guarantee accommodation. They may face the same disbelief at work that they face when they try to convince doctors, family, and friends that they are chronically ill (Schaefer 1995). In high-stress workplaces, women with FM may feel guilty asking colleagues for help or asking supervisors to adjust work tasks and hours because they do not want to increase their colleagues’ workload (Liedberg and Henriksson 2002). Besides paid work, employed women with families typically do unpaid work at home, which may include childcare, housework, and elder care. When family members do not share domestic work, employed women with FM typically have neither time to recover from paid work at home (Henriksson, Liedberg, et al. 2005) nor energy left over from work for family and social life (Liedberg and Henriksson 2002). Therefore, they are more likely than others to leave the labour force (Henriksson, Liedberg, et al. 2005; Liedberg and Henriksson 2002; Liedberg, Hesselstrand, et al. 2004). When other family members share unpaid work, women with FM are more likely to remain employed. the study

To investigate the popular messages to which people with FM are likely exposed, I turned to information available online. As Barker (2008) notes, the Internet is a principal source of health information for people with FM. Barker (2005; 2008) has usefully analyzed the contribution of FM self-help organizations to illness identity and the medicalization of FM, but there is a lack of analysis regarding information from other sources. Accordingly, in 2011, I downloaded information that those newly diagnosed with FM in the Ontario cities of Ottawa and Toronto were likely to encounter. I analyzed documents about FM posted on sites run by: FM-CFS Canada, a self-help organization; National ME/FM Action Network, a self-help organization;

• •

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The Canadian Pain Coalition, a self-help organization; The Arthritis Society, a health-education organization; • Canadian Women’s Health Network (CWHN), a health-education organization; and • three hospital-based rehabilitation programs: Toronto Rehabilitation Institute’s FM Group (TRI-FM), the St Joseph’s Health Care FM Program (SJHC-FM), and the Ottawa Hospital’s Chronic Pain Management Group Treatment Program (OH-CPM). • •

The precise documents analyzed are listed at the end of this chapter. I used four criteria to analyze the content of the collected texts: what I understood the materials to say about FM; what assumptions appeared to underlie these statements; what implications the statements about FM appeared to have; and what I found to be missing from the information materials. I began data analysis with a reading of each text, looking for key messages and statements to illustrate the messages and any mention of paid work. I then grouped these messages under headings that expressed their commonalities to create a list of six main messages. Next, I grouped these main messages into two categories: messages about FM in general, and messages about FM and work. Within each category, I arranged the main messages in the general order in which they appeared across texts. In the following sections I discuss the six main messages distilled from the critical discourse analysis, each of which has implications for shaping how those with FM decide what to do about paid employment: 1 2 3 4 5 6

FM is a debilitating chronic illness/disease; symptom self-management; professional versus experiential knowledge; leaving paid employment; the responsible employee; and the fortunate employee. f m i s a d e b i l i tat i n g c h r o n i c i l l n e s s

The information materials frame FM using medical language, discussing symptoms, causes, and the debilitating impact of symptoms. The description of widespread pain as FM’s primary symptom ­follows the widely used diagnostic criteria for FM (Wolfe, Clauw,

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et al. 2010). A short list of other symptoms usually follows, again consistent with the diagnostic criteria. The following text, from the Toronto Rehabilitation Institute’s (TRI) FM Program, is typical of symptom descriptions: “FM is characterized by widespread pain, multiple tender points, fatigue, sleep disturbance, problems with concentration and memory, and often psychological distress” (TRI 2011). In addition to listing the symptoms that are major diagnostic criteria for FM, some texts include long lists of other symptoms. In this manner, they portray FM as a complex condition that affects individuals in heterogeneous ways. Different websites alternately portray FM as an illness, a disease, a disorder, a condition, or a syndrome. Sometimes the same text uses more than one of these words. This ambivalence reflects controversy over FM’s status and even its very existence. In response, FM selfhelp organizations emphasize that FM has a bodily cause and that people with FM are legitimately sick. The abnormal brain scans that illustrate the cover of the clinical overview posted on the National ME/FM Action Network’s website represent FM as caused by brain abnormalities, while FM-CFS Canada consistently describes individuals with FM as patients. A “patient testimonial,” as the FM-CFS Canada website names stories posted by people with FM, illustrates this viewpoint: “There is no cure for FM and nor [sic] surgery that can be performed for this disease ... I pray and hope that researchers will find a cure for this devastating and debilitating disease” (FM-CFS Canada 2009). Texts from the other information sources, however, describe people with FM using a variety of terms other than “patient,” such as “people living with FM.” In this way, they imply that FM is a chronic condition rather than a disease. The texts go on to describe the impact of FM in terms of functional impairments. Some texts, such as one published on the TRIFM Program website, portray the impact as severe. One text says, for example, that FM is “a debilitating condition [that] interferes with every aspect of someone’s life” (TRI 2011). Another example is an emotional “patient testimonial” on the FM-CFS Canada website, where Sherri Lynne tells readers that FM “absolutely ruined my life ... I no longer have any quality or enjoyment of life ... and no future at all” (FM-CFS Canada 2009). Other rehabilitation texts downplay the severity of FM’s impact and suggest that, for example, it intermittently impairs physical endurance. The Arthritis Society’s (2008) FM fact sheet offers hope

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that FM’s impact will diminish with time: “Over time most people with FM are able to find a balance that is acceptable and their disease improves considerably.” Regardless of whether the information materials portray FM’s impact as severe or moderate, they have the potential to lead readers to question how FM impairments will affect their ability to do paid work. symptom self-management

The information materials tell individuals with FM that they can reduce the impact of their symptoms through self-management strategies that incorporate the advice of health professionals. Under the philosophy of self-management, people with chronic illnesses are encouraged to actively participate in decision-making with health professionals and take responsibility for managing their illness (Lawn, McMillan, et al. 2011). In making individuals responsible, however, self-management ideology accounts neither for the unequal distribution of resources that people need to manage their chronic illnesses, such as the ability to pay for drugs and healthcare and access to adequate information (Mead, Andres, et al. 2010), nor for structural and cultural barriers to self-care that are beyond individual control (Lawn, McMillan, et al. 2011). Rehabilitation and health education texts advise those with FM to accept the limitations that FM imposes on them. As the CWHN fact sheet on FM tells readers, “Listen to what your body is telling you and adjust your life accordingly” (CWHN 2007). Personal testimonials on the self-help website also reflect this adjustment advice. For example, Pat advises others with FM, “You have to accept that pain is part of your life and live ‘around’ it” (FM-CFS Canada 2009). Two rehabilitation programs tell participants that, by learning “lifestyle management strategies” (TRI n.d., 2) such as “assertiveness, attitude change, reducing pain ‘body language’, etc.” (SJHCFM 2011b), they can “achieve greater control over their symptoms” (SJHC-FM 2011a). Personal testimonials on the FM-CFS Canada (2009) website discuss specific self-management strategies. In this manner, individuals are led to believe that, through self-­management, they can improve their quality of life, a point Versnel and ­Hutchinson also make in chapter 2 of this volume. By being held responsible for controlling their FM symptoms, readers may be led to believe that the time and effort that self-­

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management requires may not be compatible with paid work. Selfmanagement advice focuses on individual change, and so it does not offer options for changing social environments, such as workplaces. This missing information may implicitly encourage people with FM to leave the workforce. professional versus experiential knowledge

It is noticeable that only one sponsoring organization, FM-CFS Canada, offers information to suggest that knowledge gained through lived experience with FM is just as valuable, if not more valuable, than medical knowledge. The primacy of medical expertise is continually reinforced with statements such as that found in the CWHN FM fact sheet: “It is very important to select a doctor who knows this syndrome ... [a] rheumatologist, the acknowledged FM specialist” (CWHN 2007). Similarly, the SJHC-FM rehabilitation program warns: “Participants are expected to attend ... follow-up sessions ... to review their progress” (SJHC-FM 2011c). Meanwhile, there is no mention of participants evaluating the program’s effectiveness. The CWHN fact sheet does not recognize that others with FM can be a source of knowledge, but explains their supportive role as follows: “Participation in a self-help group can help FM sufferers to feel less isolated, to share their experience with others ... who can listen and provide support and encouragement” (CWHN 2007). Only on the FM-CFS Canada website does the experiential knowledge of people with FM appear as valued as professional knowledge. Under its patient resources menu, the website lists support groups and provides space for people to share their experiences of FM in personal testimonials (FM-CFS Canada 2009). Personal testimonials offer readers with FM more than simply support; they offer knowledge about how others have handled various employment-related situations. As such, they are an invaluable source of knowledge. Werner, Sissel Steihaug, et al. (2003) found that, for women with chronic musculoskeletal pain in a rehabilitation program, experiential knowledge, strengths, and “recovery competence” (505) contributed to improving their quality of life. In addition, the women found the experiential knowledge of other program participants more concrete than advice from health professionals. With regard to paid work, there is every reason to suspect that those with FM could benefit from hearing about the experiences

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and advice of others with FM who have negotiated participation in the workforce. l e av i n g pa i d e m p l o y m e n t

As I explained at the beginning of this chapter, almost half of Canadians with FM are employed. Nevertheless, few of the information materials that I analyzed mention paid work. This omission may imply that paid work with FM is impossible and that it is better to apply for a disability pension. The FM-CFS Canada (2009) website implicitly advocates this route, and poignant personal testimonies reinforce the appropriateness of applying for a disability pension. One example is Rita’s story: “I tried to keep working, but I was too sick ... severe chronic pain which became debilitating, and anxiety ... I have not returned to work since.” The other national self-help organization, the National ME/FM Action Network (NME/FMAN), also presents applying for a disability pension as the appropriate route. Its website offers advice on how to make a successful application, as well as links to lawyers who can represent those making claims for disability pensions (NME/FMAN 2011; 2012). It offers such advice because the process of obtaining a disability pension can be difficult. Episodic conditions such as FM do not fit eligibility criteria that require impairments to be constant and applicants to be permanently unable to work (Lightman, Vick, et al. 2009; McKee, Popiel, et al. 2006), nor do the criteria take into account disabling work environments (Crooks, Chouinard, et al. 2008). The NME/FMAN website contains a clinical overview that discusses the concept of “workplace aggravators,” which it describes as work tasks that “may cause pain, as well as physical and cognitive fatigue” (Carruthers and van de Sande 2006). The website lists work tasks that may aggravate FM symptoms and advises physicians to use that list when supporting patients’ applications for disability pensions. Missing from the clinical overview are recommendations for changing work tasks to reduce symptom aggravation as well as alternatives to full-time work. The only two choices for those with FM who read this text appear to be full-time work with all its aggravators or applying for a disability pension. In summary, few online information materials mention work at all, and FM-CFS Canada’s self-help website encourages individuals

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with FM to apply for a disability pension. The fact that most of the information materials are silent about paid work, a central part of adult life, may lead those seeking information on FM to believe that the condition is incompatible with paid work. the responsible employee

Even though most of the materials I examined portray FM as incompatible with paid work, two of the sources suggest that remaining in the workforce is desirable. The Arthritis Society (AS) publishes a pamphlet about arthritis in the workplace (2010a), and a FM fact sheet (2008, 2) tells readers, “most people with FM are able to remain in the workforce and lead satisfying, fulfilling lives.” Also, the SJHC-FM Program recognizes that “a return to work is a vital part of the overall rehabilitation process” (Nielson n.d.). Together, these sources offer a counter-discourse to the overall message in the other texts, which suggests that most individuals with FM are too sick or impaired to work. Nevertheless, both sources advise readers to adopt strategies for self-managing FM symptoms at work, which places the onus on the individual with FM to take primary responsibility for remaining in the workforce. Only one text, on the SJHC-FM Program’s website, discusses workplace accommodations in a way that suggests employers ought to take some responsibility. This text advises employers to “make appropriate ergonomic adjustments ... Allow the worker to pace his or her activities,” and “recognize that work re-entry may be very slow. Both work hours and workload should initially be at a level that the person can reasonably manage (not what they wish they could manage or you want them to manage). These should then be gradually increased in order to maximize the chances that the worker will succeed” (Nielson n.d.). Although this advice encourages employers to accommodate employees with impairments, it does not mention that they are obliged to do so under human rights legislation. Other SJHC material about FM similarly does not contain information about employees’ rights. The pamphlet Arthritis in the Workplace (AS 2010) offers a number of suggestions to help people with FM remain in paid employment. First, there are suggestions for changing the workplace, which advise employees to change the pace of their work, alter their work schedules, and seek help from co-workers. Although well-meaning,

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these suggestions assume that employees have control over their work pace and tasks, which may not apply to occupations such as factory work where assembly lines control the pace of production, or to workplaces where staffing cuts have intensified the workload of remaining staff, or to professionals in high-workload occupations such as nursing or social work (Henriksson, Liedberg, et al. 2005). The suggestions also assume that employees have enough power to negotiate accommodations with their employers. This may not be the case for low-paid, non-unionized workers or those with shortterm or part-time jobs. Second, the pamphlet suggests, “if possible ... work from home occasionally or arrange a reduced work schedule ... If you have access to flex-time at work (working different hours), use it if you find it helps” (AS 2010). Although flexible working arrangements require employer approval, the pamphlet does not offer advice on how to negotiate accommodations. Nor does it advise employees about their right to accommodations under federal or provincial legislation. Instead, it assumes that employers will provide accommodations when employees request them. This may or may not be the case, depending on the employer, the status and negotiating ability of the employee, and the level of employer support for the worker with FM. Third, the pamphlet suggests, “if you know you have an important event coming up at work, make sure you rest at home before” (AS 2010). Resting, however, may not be possible, especially for women, who are likely to be responsible for domestic work at home as well as childcare – a fact that the pamphlet does not acknowledge. There is no advice for women on how to negotiate sharing household work with family members. Fourth, the pamphlet suggests, “try asking a co-worker for assistance” (AS 2010). Such requests may require disclosing invisible FM impairments. The consequences of disclosure may be positive; coworkers may indeed be supportive and willing to help. On the other hand, co-workers may resent taking on extra work to help a colleague with impairments. Indeed, the SJHC-FM Program acknowledges that asking co-workers for help could harm relationships with other employees (Nielson n.d.). In summary, even when information materials portray work as desirable for those with FM, their overall emphasis suggests that it is up to individuals to make themselves fit for work by managing their

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symptoms. The materials’ suggestions for workplace accommodations mostly assume that individuals have control over their work tasks and enough power to negotiate flexible work schedules, which may not be the case. t h e f o r t u n at e e m p l o y e e

Stories about experiences with employment on the FM-CFS Canada website can be understood as offering cautionary tales to those contemplating their own employment prospects. For example, Cheri’s story illustrates that people who cannot keep their symptoms under control may not be able to maintain a job. As Cheri describes, “I was unable to hold a job, even part time. Between calling in sick and my physical limitations, it was just too frustrating for employers” (FMCFS Canada 2009). Here, Cheri seems unaware that employers are obligated to accommodate employees with FM impairments. Even when employees with FM are aware of their right to accommodations, they are not always able to keep their jobs. In her testimonial, Theresa tells a discouraging story: “I worked for the federal government and I was honest with my supervisor about my illness and she was not impressed that I was losing so much time for appointments and tests. In 2002, I was ‘laid-off’ ... They are not supposed to discriminate but............ [sic] we all know they do. As well my old job gave me a bad reference as being unreliable and an abuser of sick time. I put in a claim with Human Rights and it was dismissed when my former employer said that I was let go because I was incompetent” (FM-CFS Canada 2009). The preponderance of stories such as these leads those who have employment to feel fortunate. Sophie, for example, suggests that she is lucky to have a benevolent employer willing to accommodate her impairments. As Sophie tells readers, “I have [a] job that I work 37.5 hours a week, in a call centre that cares about their employees and listens to their complaints and rectifies it ... And I lucked out ... I have steady hours, (days even) and a great benefit package which even cover my medicine (ok so I don’t qualify for short disability or long term disability) I’m not really any worst off Am I [sic]?” (FMCFS Canada 2009). Altogether, the employment stories reinforce the message that the individual ought not expect employers to do anything to accommodate impairment-related needs (not even Sophie’s story suggests

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this), but that the employee herself is responsible for maintaining employment. To the extent that she, like Sophie, is able to do so in a congenial workplace atmosphere, she ought to count herself lucky. missing messages

In general, the information materials I reviewed portray FM as a debilitating chronic illness, but suggest that symptoms can be selfmanaged. Although the materials communicate that most people with FM are too sick or impaired to work, those who are able to do so are seen as responsible for managing their symptoms on the job, and those who get workplace accommodations are portrayed as fortunate to have benevolent employers. There are, according to Statistics Canada (2010), 176,000 Canadians with FM who are employed. Collectively, they could no doubt offer a wealth of knowledge that would be useful for those with FM contemplating how to find or maintain employment. This experiential knowledge could be tapped through research and shared with others through rehabilitation programs and through self-help organizations and peer-support groups. Interestingly, there is a historical link between self-management and the valuing of chronically ill people’s lived experience. Rogers, Bury, et al. (2009) locate the roots of today’s self-management discourse in the self-help movements of the 1960s and 1970s, where chronically ill people’s experiential knowledge was valued as much as medical knowledge. However, governments eager to reduce expenditures in healthcare systems that value professional knowledge over experiential knowledge have since adopted self-­management discourse. In addition, Lawn, McMillan, et al. (2011) point out that self-management may not equalize the power imbalance between professionals and chronically ill people. As is evident in the information materials, other than those on FM-CFS Canada’s self-help website, professionals define self-management strategies based on their own expertise, not based on what they may learn from people with FM themselves. Completely absent from the information materials is a discourse of human rights. The very few information materials that suggest people with FM seek workplace accommodations assume that employers will kindly accommodate their employees’ FM, without mentioning that they are legally required to do so. Nor do the materials offer

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any advice on how to negotiate accommodations with employers or, if employers are unwilling to provide them, how to lodge complaints. As McKee, Popiel, et al. (2006) highlight, discriminatory social attitudes can pose greater impediments to the employment of people with episodic conditions than their functional impairments. Human rights legislation addresses this discrimination. However, the legislation’s success rides on awareness of human rights by both employers and employees. Given that at least one rehabilitation program, the SJHC-FM Program, recognizes the centrality of work to FM rehabilitation (Nielson n.d.), Canadians with FM deserve to have all the information they need to successfully remain in or return to the workforce, including information about their right to accommodations and how to negotiate them. conclusion

The information materials I analyzed in this chapter portray fibromyalgia as a chronic, debilitating illness or disease causing impairments that can, nonetheless, be somewhat controlled through self-management. Fewer than half of all Canadians with FM are in the workforce, and one reason for their relative absence could be because portrayals of FM lead them to believe that most people with FM are too sick or impaired to work for pay. At the same time, the materials suggest that those who can work are responsible for making themselves fit for work, and those whose employers are willing to accommodate their impairments are fortunate. Only one website, sponsored by the self-help organization FM-CFS Canada, offers information to suggest that those with FM can learn anything useful from the experiences of others with FM. Missing from all of the materials is information about how to negotiate accommodations with employers and employees’ legal entitlement to workplace accommodations. Thus, individuals are not made aware of their right to ask for accommodations, and this too could be a reason for their relative lack of participation in paid labour. Quantitative research on FM outcomes (van Ittersum, van Wilgen, et al. 2009; Stuifbergen, Phillips, et al. 2006; Neilson and Jensen 2004; Kurtze, Gundersen, et al. 2001) has found a strong association between beliefs about the condition and outcomes, including employment. Wigers (1996) also found that, when those with FM

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leave the labour force to collect disability pensions, their outcomes worsen. In this chapter, I explored one of the potential sources of beliefs about FM, namely messages and discourses in online information materials about the condition. Although there are many other potential sources of information about FM beyond the Internet, such as magazines, television, friends and family, and personal interactions with health professionals, the sources analyzed here are ones that Canadians with FM are quite likely to come across in their search for authoritative information. The information does not, to say the least, encourage them to remain in the workforce with an awareness of their right to do so. acknowledgments

I thank Valorie Crooks, Michelle Owen, and Sharon-Dale Stone for the opportunity to contribute to this book and for their insightful and instructive editing, which substantially improved this chapter. I also thank Karen Yoshida for supervising the research on which the chapter was based. The research was funded by a SSHRC grant awarded to Ernie Lightman, Factor-Inwentash Faculty of Social Work, University of Toronto; a Peterborough K.M. Hunter Graduate Studentship from the Faculty of Medicine, University of Toronto; a University of Toronto Open Fellowship; and a Carol Mitchell and Richard Venn Graduate Fellowship in Women’s Mental Health from Women’s College Research Institute in Toronto.

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in the Space of Care Provision.” acme: An International E-Journal for Critical Geographies 5(1): 50–69. – 2007. “Exploring the Altered Daily Geographies and Lifeworlds of Women Living with Fibromyalgia Syndrome: A Mixed-Method Approach.” Social Science and Medicine 64: 577–88. Crooks, Valorie A., Vera Chouinard, and Robert Wilton. 2008. “Understanding, Embracing, Rejecting: Women’s Negotiations of Disability Constructions and Categorizations after Becoming Chronically Ill.” Social Science and Medicine 67: 1,837–46. Fairclough, Norman. 2003. Analyzing Discourse: Textual Analysis for Social Research. London: Routledge. Ghazan-Shahi, Sassan, Tanveer Towheed, and Wilma Hopman. 2012. “Should Rheumatologists Retain Ownership of Fibromyalgia? A Survey of Ontario Rheumatologists.” Clinical Rheumatology 31(8): 1,177–81. Greenhalgh, Susan. 2001. Under the Medical Gaze: Facts and Fictions of Chronic Pain. Berkeley, CA: University of California Press. Hayes, Sean M., Genevieve C. Myhal, John F. Thornton, Monique Camerlain, Cynthia Jamison, Kayla N. Cytryn, and Suzanne Murray. 2010. “Fibromyalgia and the Therapeutic Relationship: Where Uncertainty Meets Attitude.” Pain Research and Management: Journal of the Canadian Pain Society 15(6): 385–91. Henriksson, Chris M., Gunilla M. Liedberg, and Björn Gerdle. 2005. “Women with Fibromyalgia: Work and Rehabilitation.” Disability and Rehabilitation 27(12): 685–94. Kurtze, Nanna, Kjell Terje Gundersen, and Sven Svebak. 2001. “The Impact of Perceived Physical Dysfunction, Health-Related Habits, and Affective Symptoms on Employment Status among Fibromyalgia Support Group Members.” Journal of Musculoskeletal Pain 9(2): 39–53. Lawn, Sharon, John McMillan, and Mariastella Pulvirenti. 2011. “Chronic Condition Self-Management: Expectations of Responsibility.” Patient Education and Counseling 84: e5–8. Lazar, Michelle M. 2005. “Politicizing Gender in Discourse: Feminist Critical Discourse Analysis as Political Perspective and Praxis.” In Feminist Critical Discourse Analysis: Gender, Power and Ideology in Discourse, edited by Michelle M. Lazar, 1–28. Basingstoke, UK: Palgrave Macmillan. Liedberg, Gunilla M., and Chris M. Henriksson. 2002. “Factors of Importance for Work Disability in Women with Fibromyalgia: An Interview Study.” Arthritis and Rheumatism (Arthritis Care and Research) 47(3): 266–74.

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Liedberg, Gunilla M., Malin Hesselstrand, and Chris M. Henriksson. 2004. “Time Use and Activity Patterns in Women with Long-Term Pain.” Scandinavian Journal of Occupational Therapy 11: 26–35. Lightman, Ernie, Andrea Vick, Dean Herd, and Andrew Mitchell. 2009. “‘Not Disabled Enough’: Episodic Disabilities and the Ontario Disability Support Program.” Disability Studies Quarterly 29(3). http://www. dsq-sds.org/article/view/932/1108. Löfgren, Monika, Jan Ekholm, and Ann Öhman. 2006. “‘A Constant Struggle’: Successful Strategies of Women in Work Despite FM.” Disability and Rehabilitation 28(7): 447–55. McKee, Eileen, Melissa Popiel, and Will Boyce. 2006. Policies and Programs to Facilitate Labour Force Participation for People with Episodic Disabilities: Recommendations for a Canadian Context Based on an International Analysis. Toronto, ON: Canadian Working Group on HIV and Rehabilitation. Mead, Holly, Ellie Andres, Christal Ramos, Bruce Siegel, and Marsha Regenstein. 2010. “Barriers to Effective Self-Management in Cardiac Patients: The Patient’s Experience.” Patient Education and Counseling 79: 69–76. Nielson, Warren, and Mark P. Jensen. 2004. “Relationship between Changes in Coping and Treatment Outcomes in Patients with Fibromyalgia Syndrome.” Pain 109: 233–41. Paulson, Margareta, Ella Danielson, and Siv Söderberg. 2002. “Struggling for a Tolerable Existence: The Meaning of Men’s Lived Experiences of Living with Pain of Fibromyalgia Type.” Qualitative Health Research 12: 238–49. Rakovski, Carter, Laura Zettel-Watson, and Dana Rutledge. 2012. “Association of Employment and Working Conditions with Physical and Mental Health Symptoms for People with Fibromyalgia.” Disability and Rehabilitation 32(15): 1,277–83. Rogers, Anne, Michael Bury, and Anne Kennedy. 2009. “Rationality, Rhetoric, and Religiosity in Health Care: The Case of England’s Expert Patients Programme.” International Journal of Health Services 29(4): 725–47. Schaefer, Karen Moore. 1995. “Struggling to Maintain Balance: A Study of Women Living with FM.” Journal of Advanced Nursing 21(1): 95–102. Scull, Andrew. 2009. Hysteria: The Biography. Oxford, UK: Oxford University Press. Sim, Julius, and Sue Madden. 2008. “Illness Experience in Fibromyalgia Syndrome: A Metasynthesis of Qualitative Studies.” Social Science and Medicine 67: 57–67.

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Stanley, Liz, and Sue Wise. 1993. Breaking out Again: Feminist Ontology and Epistemology. London, UK: Routledge. Statistics Canada. 2010. “Canadian Community Health Survey.” Last modified 14 December 2012. http://www5.statcan.gc.ca/bsolc/olc-cel/ olc-cel?catno-82m0013x&lang-eng. Stuifbergen, Alexa K., Lorraine Phillips, Wayne Voelmeck, and Renee Browder. 2006. “Illness Perceptions and Related Outcomes among Women with Fibromyalgia Syndrome.” Women’s Health Issues 16: 353–60. van Ittersum, Miriam W., C. Paul van Wilgen, Wim K.H.A. Hilberdink, Johan W. Groothoff, and Cees P. van der Schans. 2009. “Illness Perceptions in Patients with Fibromyalgia.” Patient Education and Counseling 74(1): 53–60. Werner, Anne, S. Sissel Steihaug, and Kirsti Malterud. 2003. “Encountering the Continuing Challenges for Women with Chronic Pain: Recovery through Recognition.” Qualitative Health Research 13(4): 491–509. Wigers, Sigrid Hørven. 1996. “Fibromyalgia Outcome: The Predictive Value of Symptom Duration, Physical Activity, Disability Pension, and Critical Life Events – A 4.5 Year Prospective Study.” Journal of Psychosomatic Research 41: 235–43. Wolfe, Frederick. 2009. “Fibromyalgia Wars.” Journal of Rheumatology 36(4): 671–8. Wolfe, Frederick, Daniel J. Clauw, Mary-Ann Fitzcharles, Don L. Goldenberg, Robert S. Katz, Philip Mease, Anthony S. Russell, I. Jon Russell, John B. Winfield, and Muhammad B. Yunus. 2010. “The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity.” Arthritis Care and Research 62(5): 600–10. Sources of Text for Critical Discourse Analysis

Se l f- H e l p O r gan i zati o n s Canadian Pain Coalition. (n.d.)a. “About Us.” http://www.canadianpaincoalition.ca/index.php/en/about-us. – (n.d.)b. “Healthcasts.” http://www.canadianpaincoalition.ca/index.php/ en/help-centre/healthcasts. FM-CFS Canada. 2007a. “FM & CFS/M.E. in Canada 2007.” http://fmcfs. ca/1-fm-cfs-ca.pdf. – 2007b. “What is Fibromyalgia?” Last modified 17 March 2007. http:// www.fmcfs.ca/fm.html.

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– 2009. “Personal Testimonials.” Last modified 16 October 2009. http:// www.fmcfs.ca/testimonials.html. National ME/FM Action Network. 2011. “Legal Issues – Hiring a Lawyer/ Tips.” Last modified 18 April 2011. http://www.mefmaction.com/index. php?option-com_content&view-article&id-258&itemid-279. – 2012. “Canada Pension Plan Disability Application and Appeals Guide for Canadians with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and/or Fibromyalgia Syndrome.” http://mefmaction.com/images/ stories/cpp/cppguideapr13.pdf.

Me d i ca l T e x ts Carruthers, Bruce M., and Marjorie I. van de Sande. 2006. “Fibromyalgia Syndrome: A Clinical Case Definition and Guidelines for Medical­ Practitioners, An Overview of the Canadian Consensus Document.” http://www.mefmaction.com/images/stories/overviews/fmsoverview08. pdf.

He alt h - Edu c at io n O r gan i zat i o n s Arthritis Society (AS). n.d. Fibromyalgia. http://www.arthritis.ca/page. aspx?pid-928. – 2008. “Fibromyalgia.” Last modified June 2010. http://www.arthritis.ca/ document.doc?id-325. – 2010. “Arthritis in the Workplace.” http://www.arthritis.ca/document. doc?id-38. Canadian Women’s Health Network (CWHN). 2007. “FAQ Fibromyalgia.” http://www.cwhn.ca/en/node/40784.

R eh a b il itat i o n P ro g ram s Henderson, Peter R. 2007. Programme de gestion de la douleur chronique: Séance d’information [Powerpoint presentation]. Ottawa, ON: Rehabilitation Centre, The Ottawa Hospital. Nielson, Warren. n.d. “Fibromyalgia in the Workplace.” http://www.sjhc. london.on.ca/sjh/programs/arthritic/fibro/work.htm. St Joseph’s Health Care (SJHC). 2011a. “Rheumatology: Fibromyalgia.” Last modified 2 March 2011. http://www.sjhc.london.on.ca/ ­rheumatology/fibromyalgia. – 2011b. “Fibromyalgia: What Are the Physical Demands of the Program?” Last modified 2 March 2011. http://www.sjhc.london.on.ca/ rheumatology/what-are-physical-demands-program.

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– 2011c. “Fibromyalgia: How Much Time is Required?” Last modified 2 March 2011. http://www.sjhc.london.on.ca/rheumatology/fibromyalgia/ how-much-time-required. The Ottawa Hospital. (n.d.). Chronic Pain Management Program. Ottawa, ON: The Ottawa Hospital. – 2010. “Chronic Pain Management Group Treatment Program: Overview.” http://www.ottawahospital.on.ca/wps/portal/base/thehospital/ clinicalservices/deptpgrmcs/programs/rehabilitationcentre/ servicesandclinics/chronicpainmanagementgrouptreatmentprgm. Toronto Rehabilitation Institute (TRI). n.d. “Fibromyalgia and Rehabilitation.” http://www.torontorehab.com/getattachment/our-services/ pain-management/fibromyalgia-group/fact_sheet09_fibromyalgia_and_ rehabilitation.pdf. – 2012. “Fibromyalgia Group.” http://www.torontorehab.com/ourservices/pain-management/fibromyalgia-group.aspx.

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2 Including and Accommodating Youth with Chronic Illness and Childhood Onset Disability in the Canadian Workplace joan j. versnel and nancy l. hutchinson

For youth with chronic illness or childhood onset disability, entering the world of work and attaching to the labour market can prove a precarious process. For some youth, managing the effects of a chronic illness may require knowledge and training beyond that required of their peers in similar circumstances. In this chapter, we draw attention to the need to provide chronically ill youth with opportunities to develop the requisite knowledge and skills for the transition from school to the workplace. Many of the challenges in this transition are similar whether a young person has a chronic illness or a disability. While most of the examples throughout this chapter are of youth with chronic illness, a few are of youth with childhood onset disability; where we have included examples of youth with childhood onset disability, the challenges are consistent with those experienced by youth who experience chronic illness. We draw on recent research on youth at the intersection of education, health, and employment, discuss the current Canadian context for youth with chronic illness, and describe features of interventions that are emerging to help these youth negotiate this critical intersection as they join the Canadian workplace. Our data are from two fields of research – work-based learning and chronic disease selfmanagement – and highlight findings from one program of research in each field to illustrate the challenges for youth who must negotiate chronic illness as they enter the workplace. Our goal is to begin

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to determine which experiences matter most and what aspects of context facilitate or hinder the readiness and skill development that is essential for youth with chronic illness to experience success in the adult world of work. The first program we focus on in this chapter is a fifteen-year research program in work-based learning for Canadian youth with a range of illnesses and disabilities. Work-based learning refers to interventions associated with educational programs that emphasize learning in the workplace (Stasz and Stern 1998) and can include learning experiences for high school students such as workplace mentoring, paid work experience, instruction in workplace competencies, and co-operative education (Smith and Betts 2000). Students who opt to participate in co-op education in high school earn credits toward graduation for workplace participation, which is occasionally paid but usually unpaid. Most of the research we have conducted on work-based learning has been multiple-perspective case studies in which we have observed youth with chronic illnesses, childhood onset disabilities, or both during their workplace experience, and interviewed youth, their workplace supervisors, and often their parents, work-based learning educators, and co-workers. We have also conducted individual interviews about experiences in work-based learning with youth at risk of dropping out of school due to chronic illness, childhood onset disability, or other personal challenges, and have conducted focus groups with work-based learning educators. All data were audio-recorded, transcribed verbatim, and analyzed using standard methods of qualitative analysis involving constant comparison to generate codes, categories, and themes. The second field of study we reflect on in this chapter is a program of research focused on early preparation of youth for self-­ management of chronic illness in health, education, and employment contexts. Self-management of chronic illness refers to individuals taking substantial responsibility for managing their chronic illnesses. This research program examines the factors that influence the transition of youth with chronic illnesses from youth- to adult-based systems in the health, education, and employment sectors ­(Versnel 2010). We are currently conducting several studies using mixed methods with youth with chronic illness who have a broad range of diagnoses including diabetes and Crohn’s disease, and youth who have recovered from cancer. The specific study we draw on for this chapter is an intervention that examines the efficacy of a program

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for young adolescents with chronic illnesses and their families. The program provides intervention for youth with chronic illness, their parents, and their siblings. Approximately thirty families had been involved in this program as of 2012. The data we present in this chapter are drawn from a focus group and individual interviews with older youth with chronic illness who served as facilitators when the program was delivered to younger adolescents with chronic illness. Again, data were audio-recorded, transcribed, and analyzed using standard qualitative methods. We report the perspectives of the older youth on their experiences as leaders within this program and the contribution of these leadership experiences to their own health, education, and employment transitions. In this chapter we focus on accommodating chronic illness and chronically ill youth in the Canadian workplace. For people managing chronic illnesses, learning to negotiate the workplace (and other) accommodations they need is critical because they will do so continually throughout their lives. Similar to findings in chapter 1, our research, and other research we review in this chapter, shows that the responsibility for negotiating ongoing accommodations in the workplace frequently rests with the individual with chronic illness. The need to negotiate this process over time and with different employers in harsh financial times magnifies the importance of making sure youth with chronic illness are able to advocate effectively for themselves. In considering the factors that might contribute to the design and implementation of such preparation programs, it is important to situate the issue within the current Canadian youth employment context. the current canadian context

Although Statistics Canada collects data on the employment characteristics of Canadian youth, it is difficult to obtain an accurate picture of the employment situation of youth with chronic illnesses in Canada. Statistics Canada asks survey respondents to identify whether they have a disability, but there is no way to determine whether the cause of the disability is a chronic illness, a congenital or acquired health condition, or an injury. Nevertheless, the most recent data available show significant differences between youth with and without disability. These data show that those aged twenty to twenty-four and reporting disability are significantly less likely

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to participate in the labour force than non-disabled youth (63.7 per cent versus 80.7 per cent) and are more likely to be unemployed (15.1 per cent versus 9.9 per cent) (Human Resources and Social Development Canada 2011). Youth in general are more likely to be unemployed than adults, and are also more likely to be employed in part-time positions, have access to fewer benefits, and are more vulnerable to labour market fluctuations (Versnel, DeLuca, et al. 2011a). These factors influence all youth and it is likely that chronically ill youth are at even greater risk for poor labour force attachment and for social exclusion (DeLuca, Hutchinson, et al. 2010). For more than fifteen years, the educational systems in every province in Canada have had in force policies that require inclusion of students with chronic illnesses and childhood onset disabilities in the regular classroom unless that placement has been shown to be unable to meet the student’s learning needs. In addition, each province requires the development of an Individual Education Plan to outline the accommodations each student needs to access the curriculum and participate socially in the life of the school (Hutchinson 2010). Thus, youth who are currently making the school-to-work transition in Canada have experienced a school system where inclusion of students with chronic illness in mainstream classrooms has been considered best practice. Unlike the adults who are currently in the workforce, these students have been educated in a system with policies that were intended to ensure that they received the support they needed to engage in the regular curriculum. Given the recent emphasis on inclusive education in Canada, some youth with chronic illness will be aware of their rights and will expect to be accommodated in the workplace. Others may be unaware that accommodations have been negotiated for them in school, because they have never known anything else, and may have no idea that these supports need to be negotiated. youth as developing human beings

We have long known that adolescence, roughly defined as ages twelve to eighteen, is a developmental period of rapid change and growth in physical, psychological, social, and cognitive function (Erikson 1968; Yeager, Bundick, and Johnson 2012). Beyond adolescence is the period of early adulthood, roughly regarded as ages eighteen to

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twenty-four. Authors in the empirical literature disagree about these classifications, but most do agree that change and growth occur well into the twenties (Arnett 2000). Not surprisingly, therefore, there is evidence of cognitive and social immaturity among youth who participated in our two research programs. Jerry (all research participant names are pseudonyms), for example, was sixteen years old in grade 11, and had a chronic health condition that affected his digestion, as well as a learning impairment and speech and language delays. He tended to do everything slowly, reported finding school “boring,” and aspired to train as a mechanic in the armed forces. He was in the work-based learning program and had requested a co-op education placement in a garage, a hospital, or a computer repair shop. He was placed in the service department of a busy, fast-paced car dealership. Jerry’s attendance at the workplace became increasingly erratic and, when he did attend, he was not able to focus, solve problems, or monitor his performance. He spent much of his time, when he was present, observing one mechanic after another, and grew bored and restless. Laurie, who was eighteen years old, in grade 12, and had a history of learning difficulties and poor attendance, was also in a co-op placement. When we observed her, Laurie had been placed in a neighbourhood garage. She had difficulties meeting her supervisor’s expectations and did not demonstrate strategies for asking for assistance or negotiating accommodations. After one particularly difficult day, she simply did not return to the workplace. Neither Laurie nor Jerry successfully completed their co-op placement (fuller case descriptions appear in Versnel, Hutchinson, et al. 2008). The workplaces we observed in these two case studies afforded few opportunities for students to engage in meaningful activities designed for their state of cognitive readiness. Supervisors had not been informed about students’ needs. As a result, they rarely provided guided explanations and students rarely asked questions. Students lacked the maturity to navigate and negotiate their way to successful experiences in work-based learning. An example of someone not in school was Max, an eighteenyear-old with cognitive impairments who received accommodations throughout his school career but had not learned how to negotiate them for himself. Max was working dependably in a lumber store when we observed him. All went well when Max was able to consult regularly with his supervisor, Lee. However, when Lee

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was ­unavailable, Max became agitated and flustered. Lee observed, after one of these occasions, that unless Max could learn to ask for help and accommodations and learn to negotiate his way through unpredictable situations, he would never secure and maintain employment. Max, meanwhile, suggested that he “always” needed Lee to be available to tell him what to do (for more detail about Max’s case, see Hutchinson, Versnel, et al. 2008). These three case studies illustrate the challenges of invisible illnesses and impairments, which is also addressed throughout this volume, as well as the need for adolescents with chronic illness and childhood onset disability to be aware of their own needs and strategic in seeking support to meet them (Gerber, Price, et al. 2004; Stacey 2001). Youth differ from adults, particularly in the world of work. They are novices in the employment context and lack experience in dealing with adults as peers and colleagues. Youth with chronic illness face additional challenges – they may not only lack employment experience and exposure to adult social roles, but also frequently have to navigate through this transition with complex health needs that affect their ability to fulfill an employee role, make accommodations necessary, and increase their need for negotiation and self-advocacy. p r e pa r at i o n f o r t r a n s i t i o n

Like all adolescents, youth with chronic illness have strong ties to their peers, but hospitalization, lack of opportunity to “hang out,” hovering parents, and health risks can disrupt these relationships (Hackett, Johnson, et al. 2005). These factors can also affect early vocational development (Stam, Hartman, et al. 2006; Wallander and Varni 1998). The symptoms of and limitations imposed by managing a chronic illness can further restrict youths’ opportunities to learn how to make decisions. The potential for some adolescents to identify themselves solely within the context of their illness is very real. Having a chronic illness can also wreak havoc on the body and lead to difficulties with body image (Luyckx, Seiffge-Krenke, et al. 2008). The Need for Self-Advocacy Educational attainment is only one component of the repertoire of skills youth need as they transition from school to work. All youth

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need to be able to advocate for themselves at work. Youth with chronic illness additionally need education, practice, and feedback on self-management and self-advocacy strategies (Test, Fowler, et al. 2005; Versnel 2011). The self-advocacy framework developed by Test, Fowler, et al. (2005) includes knowledge of self, knowledge of rights, communication, and leadership. Test, Fowler, and colleagues conceptualize these four elements as building blocks, integral to the development of self-advocacy. Data from both of our research programs illustrate the need for youth to develop self-advocacy skills, as Test, Fowler, and colleagues (2005) argue. We provide an example here from the work-based research program, and later we provide examples from the research program on self-management of chronic illness. Naomi, who had cerebral palsy, was working in a travel agency when we observed and interviewed her over a three-month period. She received physical accommodations (e.g., when she asked, her employer altered the height of her desk to accommodate her wheelchair), social accommodations (e.g., the workplace supervisor, K ­ endra, asked the people Naomi spoke to on the telephone to speak more slowly), and, most importantly, teaching and learning accommodations (e.g., her supervisor told her what she should do each day, walked her through the steps involved, and gave her more complex tasks over time). Naomi told Kendra (and the researchers) how she learned best, so that Kendra was able to effectively teach Naomi how to perform her job. It was clear that Naomi understood the accommodations she needed, was willing to describe them, and communicated effectively with Kendra to self-advocate for a way of teaching and learning that was effective for both of them (for more detail about Naomi’s case, see Hutchinson, Versnel, et al. 2008). Opportunities for Leadership and Engagement Having leadership skills, which Test, Fowler, et al. (2005) define in their framework as the ability to learn the roles and dynamics of a group as well as the skills to function in and lead a group, is an important factor that can facilitate self-advocacy. Accordingly, youth with chronic illness need opportunities to develop leadership skills, such as those engaging in organized programs provides (­Versnel, DeLuca, et al. 2011b). Research shows that youth who participate in organized programs can learn leadership, strategic skill development,

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social capital, and empowerment (Jarrett, ­Sullivan, and ­Watkins 2005; Larson, Walker, and Pearce 2005; Wong, ­Zimmerman, and Parker 2010). Such programs give youth opportunities to make decisions, accept responsibility, and problem solve with adult support. Test, Fowler, et al. (2005) argue that robust self-advocacy includes the ability to demonstrate leadership and advocate on behalf of others. We observed four cases of youth showing such leadership and advocacy, and each demonstrated that they could negotiate accommodations in various contexts including the workplace. Naomi, discussed above, told us how she had recently addressed a group of younger adolescents and children with physical impairments at a meeting of a community agency that supported these youth. She said that she had told to her audience how to self-advocate in many contexts and advised them, “I don’t feel any different from anybody else [so speak up and] try to adapt as best you can.” Naomi not only wanted to help her peers to advocate and negotiate workplace accommodations, but also wanted to get “as much education” as she could, “so I can be a top head honcho of a travel agency.” She elaborated: “I can be directive and open to people with disabilities more if I’m like the top of my travel [profession] rather than like just some Joe working in it.” Her goal was to make travel more accessible for all people with impairments, “to make a difference” (Hutchinson, Versnel, et al. 2008). Naomi was both effective at negotiating workplace accommodations for herself and, at the age of eighteen, was already a leader for others’ advocacy. While many of the youth we have spoken with were not as advanced in their leadership abilities as Naomi (such as Max, ­Laurie, and Jerry, discussed earlier in this chapter), our data collected in studies of work-based learning over fifteen years support Test, Fowler, et al.’s (2005) contention that leadership characterizes youth who have developed strong self-advocacy skills (see also De Luca, Hutchinson, et al. 2010). As well, data from our research with youth engaged as leaders for an early preparation program for young teens with chronic illness and their families provide evidence of the salience of the leadership experience for enhancing self-­management skills. We have three examples from this data set. Brenda, a nineteen-year-old who had experienced cancer at age thirteen, noted, “It wasn’t that I learned to take on more but how to do things more effectively – teaching them how to do the three-minute health summary made me better at doing it for myself.” Janice, an eighteen-year-old with

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Crohn’s disease, said, “I am better able to articulate things that I need – at school, at clinic and at work [after leading others].” ­Calvin, an eighteen-year-old with Type I diabetes, stated, “Even though I still find doctors intimidating, I am more confident and I am not afraid to let them know I don’t always agree.” Brenda also made the connection between her leadership role in the self-management program and her experience at university: “We had to do a group p ­ roject in English. I was a first year student in a second year class and, even though I was the youngest, I thought I was the best person to lead because until I stepped in we weren’t making progress. I don’t mean to brag but applying the things I learned here made me able to get the group to do what needed to be done.” Janice made a similar connection and shared how her leadership in the self-­management group had given her the confidence to volunteer to be a young adult supporter for a youth group: “I saw myself as a role model so I translated that into my new role and I really think it was beneficial.” In the next section of this chapter, we articulate ways in which exemplary work-based education and self-management programs can begin to address the transition challenges youth with chronic illness face. i n t e r v e n i n g w i t h y o u t h at t h e i n t e r s e c t i o n o f e d u c at i o n , h e a lt h , a n d e m p l o y m e n t

Workplace-based learning programs have been widely used as a route to vocational preparation for disaffected and vulnerable youth, including those with chronic illness (Hutchinson, Versnel, et al. 2011; McDonagh and Hackett 2009). There are, however, few ways to match youths’ specific needs to the programs most likely to effect change for them. Every program seems to be effective for some youth and miss the mark for others (Hutchinson, DeLuca, et al. 2009). That is, some youth enrolled in a particular work-based program thrive and go on to workplace success while others fail or grow frustrated because their needs are not met. In this regard, aspects of the workplace context that appear to be critical include supervisors’ expectations that youth can work relatively independently and willingness to provide accommodations (Hutchinson, ­ Versnel, et al. 2008; 2011). The work-based learning educator also plays a critical role in matching the student to the workplace (DeLuca, Hutchinson, et al. 2012). This suggests that until we understand the contextual

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factors that make some work-based learning programs a good fit for youth with particular individual characteristics, we will continue to see many youth with chronic illness and disengaged youth on a path to social exclusion. DeLuca, Hutchinson, et al. (2012) recently developed a model that uses a person-in-context approach to explore the characteristics that can enable a “good fit” of work-based learning programs to the needs of students with chronic illness and other students at risk for poor school-to-work transitions. This model focuses on three critical domains: the individual domain, the socio-cultural domain, and the economic-political domain. Within the individual domain, which is most relevant for this discussion, the model directs attention to facets of vulnerable individuals such as agency, self-determination, and self-advocacy skills. The model also suggests that the support these youth receive for autonomy from educators and parents is a critical factor in their ability to successfully transition to the workplace. Recent studies suggest that support for autonomy helps youth develop a sense of work hope, that is, belief that their academic efforts can pay off in their future careers (e.g., Kenny, Walsh-Blair, et al. 2010). Part-time employment during the high school years has also been seen as contributing to workplace readiness. While workbased learning programs are frequently found in Canadian high schools, self-efficacy (which appears to be vital to success in workbased learning) is often the focus of self-management programs for youth with chronic illness that frequently take place in health care contexts and other community settings. Part-Time Employment Schools that offer programs that connect youth to employed adults, through structures such as job shadowing and internships, have higher rates of students who enrol in postsecondary education (Steinberg 1997). Moreover, strengthening linkages between work and school increases the likelihood that young people will perceive their work as an extension of school, and heightens the salience of both spheres (see DeLuca, Hutchinson, et al. 2012; Marsh 1991; ­Versnel 2011; Versnel, DeLuca, et al. 2011a; 2011b). If schools were to become more involved in the job selection process when youth seek part-time work, perhaps youth would secure jobs of higher quality and choose positions from which they would acquire skills

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and knowledge they value (Stone and Mortimer 1998). However, adolescents with chronic illness often have fewer opportunities for work experience than their peers during high school. Carter, Trainor, et al. (2011) found that only about half as many youth with chronic illnesses were engaged in work during the summer months compared to youth without. With less experience in summer employment, youth with chronic illness are likely to fall behind their peers in acquiring life and work skills (Barnes and Mercer 2005; ­Kingsnorth, Healy, et al. 2007; Roessler, Neath, et al. 2007; Shier, Graham, and Jones 2009). The role of part-time employment in adolescent development is a controversial topic (see Monahan, Lee, and Steinberg 2011). Available research suggests that while working more than twenty hours per week during the school year is probably not advisable, working less than this does not seem to affect an adolescent’s academic, behavioural, or psychosocial well-being. What is not clear is whether this level of commitment of time and energy is feasible or advisable for most youth with chronic illness. This research suggests that when youth work part-time, parents allow them more autonomy in decision-­making, something that many youth with chronic illness need and would find beneficial. Overall, it seems that part-time work of low to moderate intensity might be another means for youth with chronic illness to prepare for adult participation in the Canadian workplace. However, research is needed to investigate the relative benefits and costs for this group, who often lack stamina and energy. Despite physical limitations, these young people need rich experiences during these key adolescent years to enhance development for life and prepare them to assume roles as working bodies when they become adults. Chronic Disease Self-Management Programs Self-management programs for youth with chronic illness are relatively new and, as a result, under-researched. These programs have the potential to assist adolescents with chronic illness in getting or maintaining roles in the workplace because they enable them to better manage multiple aspects of their chronic illnesses, ranging from symptoms to self-identity. Recent research (Kennedy, Rogers, et al. 2009; Sawyer 2008; Stinson, Wilson, et al. 2009) indicates that adult chronic disease self-management programs do not transfer well to

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adolescents and a “one size fits all” approach is not effective. As a result, some health jurisdictions have implemented adolescentspecific programs. Stinson and colleagues (2008) have developed and evaluated a web-based self-management program for adolescents with arthritis in Ontario. The program has twelve modules for adolescents and two modules for parents. Results of preliminary program evaluation indicate that the Internet will likely assume a major role in the delivery of self-management interventions for paediatric and adult patients with chronic health conditions, as also pointed out in chapter 1 of this volume. There is early evidence that Internet-based selfadministered interventions are efficacious for children with asthma, diabetes, headaches, cancer, and eating disorders (Stinson, Wilson, et al. 2009). The Expert Patient Program in the United Kingdom has developed a self-management program for adolescents called Staying Positive (Salinas 2007). Staying Positive is a series of three one-day workshops delivered over three months to young people aged twelve to eighteen who live with a long-term health condition. These programs, however, have not undergone rigorous evaluation. Empirical studies have not yet identified valid and reliable non-biomedical markers for measuring the efficacy of self-management interventions in all populations (Foster, Taylor, et al. 2007). There is growing recognition of the need for measures that evaluate performance and participation, particularly for children and adolescents with life-long conditions. Self-management approaches for youth are more likely to be successful if they are based on current knowledge about the developmental challenges that adolescents face in the ever-changing social contexts of their lives (Sawyer, Drew, et al. 2007). Some adolescents’ chronic illnesses have outward, visible manifestations that distinguish them from their peers. This may affect their ability to form healthy peer friendships, including at school and work, and intimate relationships. The need to belong, which is strong during adolescence and early adulthood, can lead to resistance in following treatment regimes. Experimentation with risky behaviours can have disastrous health effects for youth with chronic illness. As well, the tendency for parents to over-control and protect youth with chronic illness or childhood onset disability can reduce youths’ o ­ pportunities to accept responsibility for independent action and thought (Miller 2009).

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Having a chronic illness as an adolescent impacts daily experience and affects participation in activities, roles, and relationships. For some, the need to carry out complex medical routines prevents full participation in the spontaneity that characterizes much adolescent activity. Others must cope with restrictions in their capacity for employment or post-secondary education as they watch their peers embark on adult roles. Many also face the need to cope with overwhelming emotional and psychological consequences that impact their relationships with parents, siblings, and peers. Adolescents with chronic illness do not necessarily completely acquiesce to their parents’ and health care providers’ controlling tendencies. Most learn to become more involved in the management of their own health care needs, but the path of that increasing involvement is not well understood, and it does not appear to mirror how adults learn to self-manage their health needs as they age (Sawyer and Aroni 2005). For example, Jedeloo, Van Staa, et al. (2010) conducted a qualitative study of youth with chronic illness in the Netherlands. They used Q methodology, a qualitative approach that seeks similarity in perspectives, to investigate youths’ readiness to self-manage chronic illness. Their study involved sixty-six youth aged twelve to nineteen and led to the identification of four distinct profiles: (a) conscious and compliant; (b) backseat patient; (c) selfconfident and autonomous; and (d) worried and insecure. Each profile differed in the level of independence, involvement with selfmanagement, adherence to therapeutic regimen, and appreciation of parents’ and health care providers’ roles. Conscious and compliant youth were highly involved in managing their illness. They did not feel disclosure was necessary as they thought they had the illness under control. They wanted their parents and health care providers to see them as adults and strongly resisted any parental involvement in their decisions. Backseat patients were youth who were somewhat less mature and more dependent on their parents. They relied on their parents to speak for them because they lacked confidence, and they preferred to remain uninformed and uninvolved. Youth who were self-confident and autonomous were open about their illness and did not worry about the impact. They were confident in their encounters with health professionals and independently made changes to their medical management. The worried and insecure appeared to become easily overwhelmed. They were distressed by the impact of their illness on aspects of their lives beyond

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their health. At times they used denial to reduce their tendency to be anxious and worried. The desire to participate in treatment-related decisions was important to varying extents for these four preference profiles. There did not appear to be one approach to adolescent self-management preparation that would be effective for all four groups. Importantly, this study demonstrated the value of a non-disease-specific approach. The adolescent participants had various chronic illnesses but were found to have much in common. No single chronic illness was particularly associated with any of the four profiles. The diagnosis clearly matters less than the match between the strategies used for self-management and the youths’ preference profiles. This research is of interest because youth with different profiles may benefit from different approaches in interventions for transition preparation. These early findings of recent research on self-management interventions and on the complex characteristics of youth with chronic illnesses illustrate the ongoing challenges inherent in helping these youth prepare for roles as workers and working bodies as adults. These findings also demonstrate the urgent need for research that informs our actions and interventions with youths. conclusion

For youths, living with chronic illness or disabling impairment affects many aspects of participation – how they are able to engage in daily activities, the roles they can and cannot assume, and the responsibilities and relationships to which they can commit during these critical developmental years. Given the importance of experience during adolescence to future cognitive maturity and the learning of adult roles and preparation for employment, there is an urgent need for careful reading of extant research on workbased learning and chronic disease self-management for youth with chronic illness. We know that the characteristics of chronically ill youth vary greatly and that their accommodation and support needs within and beyond the workplace vary accordingly. At the same time, we must recognize that all youth with chronic illness need to be able to advocate for themselves and negotiate accommodations in their working environments. Experience as well as sensitive educators and health care providers are all powerful teachers.

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The large number of remaining questions and contentious issues in the fields of research we have covered in this chapter underline the importance of existing research and need for continued research. As well as developing, implementing, and evaluating sensitive interventions that meet the needs of chronically ill youth, it is critical to include the perspectives of youth with chronic illness on these undertakings in future studies. We must enable them to make autonomous, well-informed choices about their contributions as working, adult members of Canadian society. acknowledgements

This chapter is based on data from the research program on co-op education and workplace learning (CEWL), “Individual and Contextual Factors in Work-Based Education Programs: Diverting AtRisk Youth from the Path to Social Exclusion” (with investigators Nancy L. Hutchinson, Peter Chin, and Joan J. Versnel) funded by the Social Sciences and Humanities Research Council of Canada and supported by Seed Funds, Faculty of Education, Queen’s University. More information about CEWL’s work is available online (http://orgs.educ.queensu.ca/cewl). The chapter is also based on data from the Chronic Condition Management Research Program at the School of Occupational Therapy at Dalhousie University. Specific funding for the You’re in Charge program (with principal investigator Joan J. Versnel) is from the Nova Scotia Department of Health and Wellness.

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3 Navigating Chronic Injuries in the Workplace: Five Workers’ Experiences with Systems and Relationships t h e r e s a av e r s a a n d n i c o l e t t e c a r l a n

Injuries that involve the back, joints, and muscles are the most common injuries experienced by workers in all sectors of the Canadian economy. Women and men, professional, skilled, manual, permanent, and contingent workers are all at risk for musculoskeletal (MSD) injuries, which often result in life-changing, long-term, and invisible impairments. According to Ontario’s Workplace Safety and Insurance Board (WSIB) (n.d.), MSDs account for at least 40 per cent of lost time worker compensation claims. Whether they occur in an instant or develop gradually, MSDs can have devastating consequences for individuals’ work and home lives. In this chapter we go beyond the statistics to present the stories of five Canadian workers whose lives have been changed by work-related injuries and the resulting invisible chronic illnesses. While four of the five have remained in paid work, they were not able to maintain their preinjury jobs. Consequently, they are dealing with significantly different work experiences in addition to generally altered lives. That the five workers we profile here struggled to remain at work after developing MSDs is not surprising given that work is central to people’s lives. Work fulfils basic human needs such as financial survival and internal satisfaction (Vestling, Tufvesson, and Iwarsson 2003). In fact, in their 2008 study of 1,500 mid-level professional employees in eight countries, Kuchinke, Ardichvili, et al. (2011) found that work was a top concern second only to family.

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MacEachen, Kosny, et al.’s (2010) interviews of sixty-nine injured workers provide insights on the importance of finances to injured workers’ efforts to return to employment. Specifically, they found, “people living paycheck to paycheck begin to incur financial hardship immediately after injury with the first missed paycheck” (359). Indeed, a recent report estimates that 7 per cent of injured workers visited food banks prior to injury, while 77 per cent visited a food bank after injury, which shows the dire effects of post-injury income loss (Ontario Network of Injured Workers 2011). Yet, the draw of work is not just financial, as was pointed out in chapters 1 and 2, and many people would choose to continue working even without the financial impetus to do so (Kuchinke, ­Ardichvili, et al. 2011). It is well established that having quality work positively affects health and reduces psychological distress (Malenfant, LaRue, and Vézina 2007; Schwartzberg and Dytell 1996; Stone 2003). Indeed, the post-injury journeys of the workers we profile here started with their efforts to retain a place at work, as they dealt with the pain and life adjustments that were a consequence of chronic illness and injury. In this chapter we discuss how five workers struggled after they acquired chronic MSD illnesses due to work injuries. To return to work and maintain income after their injuries, they had to engage with new and often unfamiliar systems such as workers’ compensation and work reintegration processes. The hidden nature of their chronic injuries and illnesses complicated their journeys, and often meant that they had difficulty establishing the legitimacy of their claims regarding illness. We examine the role unionization played and how collective agreements affected their experiences. We also discuss how relationships with supervisors and co-workers were affected. We conclude with a consideration of factors that were important in allowing these workers to maintain employment, and we highlight the fact that the one worker unable to maintain employment was also the one who lacked access to social, union, and personal support. g at h e r i n g w o r k e r s t o r i e s

To recruit workers to interview for this research, we drew on preexisting connections with labour unions in Ontario. We set out to find participants from different industrial sectors representing construction, manufacturing, and health care, and ended up ­interviewing

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five workers who represent these sectors with different levels of training and education. Each participated in an audio-recorded, semi-structured interview that lasted from one to three hours. After we transcribed and coded the interviews, we asked the interviewees to validate our interpretation of their stories. Despite repeated efforts using different methods we were unable to contact one participant post-interview (Namusa, a pseudonym), but the other four agreed that we had accurately reported their histories. We thought it was important to include Namusa’s story here, even though she was unable to verify our interpretation of her story, because her experiences as a non-unionized worker trying to return to work without support were very different from the experiences of the others we interviewed. The five individuals were willing to share their stories with us because they believe it is important for researchers, students, and policy-makers to understand and recognize that there are people behind the “file numbers.” Their struggles shed light on what needs to be addressed to improve the experiences of workers managing chronic MSDs. In the following discussion, all names used are pseudonyms. The participants were as follows: Mary was a nurse with more than twenty-five years of service who sustained permanent injuries when using repetitive, twisting, and awkward motions. After acquiring a MSD she retrained and moved from working in the emergency department to being an occupational nurse. • Tom worked for several decades at a utility company as an outside worker when he fell and acquired permanent knee injuries. He was subsequently moved to sedentary, inside work. • Bill worked outdoors for thirty years. He was permanently injured while in a bucket suspended twenty feet in the air when his bucket truck was struck by another vehicle. He was subsequently moved to inside work. • Barry was a “jack of all trades” who had many jobs before he was injured. He had worked for an auto manufacturer for just ten months when he was struck from behind and sustained a permanent back injury. He was subsequently moved to sedentary, inside work. • Namusa came to Canada from a war-torn country to start a new life for herself and her family. Her working life ended when, after •

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five years as a personal care attendant, she slipped, fell, and injured her back. At the time of our interview, she remained unable to find paid employment. e n g a g i n g t h e w o r k e r s ’ c o m p e n s at i o n s y s t e m

When injured on the job, Canadian workers are thrust into legal and bureaucratic processes such as the workers’ compensation system and formal work reintegration processes, which require obtaining clinical diagnoses, prognoses, and treatment plans. For unionized employees, collective agreements that outline the terms and conditions of work can also influence experiences of reintegrating into the workplace. These systems are often complex and unfamiliar to workers and can cause stress at a time when they are trying to manage pain and gain sufficient functional capacity to return to the workplace. Navigating these legal systems becomes even more difficult once the injury or illness becomes chronic and workers’ needs become permanent. Most, but not all, workers are covered by a provincial insurance scheme that provides wage loss and health care benefits for injuries caused by work. In Ontario, the relevant body is the Workplace Safety and Insurance Board (WSIB, formerly the Workers’ Compensation Board of Ontario), which is a contributory benefits program funded by premiums paid by employers. Workers’ compensation systems were historically developed to address acute injuries for which there would be a defined period of disability and then a recovery to the pre-injury state. In fact, up until the 1990s, Ontario adjudicators would look for four “immediates” (immediate onset of pain, reporting, medical attention, and layoff) before workers were entitled to benefits. Those parameters have long since expanded to include compensation for chronic diseases such as cancer, asbestosis, and gradual-onset MSDs that result in chronic illnesses, such as carpal tunnel syndrome. However, processes after injury, such as diagnosing the condition, getting the claim accepted by workers’ compensation, and returning to work, are all regulated and were not designed to easily accommodate complex injuries such as MSDs. Over time, entitlement to benefits has become more litigious as employers and workers engage professional staff to represent their interests in disputes over entitlement. A formal appeal process exists in cases when claims are denied or if disputes arise throughout the

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process. For example, a 2011 Ontario Network of Injured Workers report that reviewed the experiences of over 300 injured workers estimates that two-thirds of injured workers are not able to get compensation funding to receive all the health services they require following their injuries. These workers must learn about and navigate complex appeals processes themselves to obtain funding for needed health services. Each of the workers we interviewed was covered under the provincial compensation system and eventually received workers’ compensation benefits for their injuries. Four of the five, however, were not initially granted appropriate benefits and were required to go through the appeals process. Barry, for example, was off work for four years following an accident in which he was hit by a tow motor at work. He only received WSIB benefits for some of that time, so he appealed for greater access to benefits. Pending the appeal, he relied on health and accident insurance benefits, which are paid at a rate of approximately 66 per cent of wages and only last about six months, instead of the WSIB rate of 80 to 90 per cent of pre-accident earnings for the duration of injury. During this time Barry experienced significant financial problems and familial stress. He also felt let down by his union, which was undergoing changes in leadership. After he hired a lawyer and won his appeal in 1988, Barry returned to work but faced new challenges in obtaining accommodated work that he was physically able to perform. Research shows that injured workers find the compensation process time-consuming and stressful. MacEachen, Ferrier, et al. (2007), for example, examined research, documents from Ontario’s Workers’ Compensation Board, and injured workers’ experiences to find that often injured workers such as Barry need to appeal initial decisions, which adds stress to the workers’ interactions with the very systems meant to help them. The appeal process is complex and frequently requires workers to obtain assistance from either unions or legal aid clinics. Mary, who was ultimately successful in her appeal of an initial WSIB decision, described her experience in this way: “From the WSIB point, I can’t tell you how many adjudicators I had. My case kept getting bumped and bumped and bumped. And you always had to be on them, writing letters ... so anytime somebody didn’t respond to me, I’d be back writing a letter again and creating a paper trail. But it’s not an easy system to navigate.”

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The workers’ difficulties with the WSIB and work reintegration processes were partly due to the bureaucratic requirement to provide specific clinical/medical information regarding diagnosis and prognosis for chronic conditions. While detailed diagnosis and prognosis help to provide clarity, chronic injuries and illnesses are often invisible and permanent. As well, individuals do not necessarily experience static impairment and are not affected in the same way. Therefore, searching for a diagnosis often puts workers in conflict with their treating physicians, who can be unable, or often unwilling, to offer definitive diagnoses or estimates about how long it will take before an injured worker can return to work. The workers we spoke with spent an average of two years going from physician to physician trying to secure a diagnosis. Mary, who as a nurse was familiar with the medical system, used her knowledge of that system to document her struggle for a diagnosis and reported: I was seeing anyone who would help me, so I saw a plastic surgeon. I saw an orthopaedic surgeon. I saw psychiatrists. I saw pain management. I was going to chiropractors, acupuncturists, physiotherapists, anybody that could help me, I went to. I was on anti-depressants for a while because I was so devastated. You got to the point where you just couldn’t do anything anymore. Everything was an issue. You tried to do what you needed to do but you were getting stone-walled at every place you went ... The biggest turnaround was with the pain management physician I went to see and he was a GP [general practitioner] but he was brilliant because he was the first guy that actually diagnosed what was happening with me. You know, because I had all this involvement with all these muscles here and they were in hyper spasm all the time, so my arm was up like this and other guys would go, “oh yeah, you can move your arm.” Similarly, Barry reported that he had to visit multiple doctors before he found one who could diagnose his injury. This doctor testified on Barry’s behalf at appeal hearings. According to Barry, “He saved my life.” Tom described the system as having “a lot of red tape.” When asked he explained: “Just every month I had to have a form filled out by my surgeon. It had to go to the company and it had to go to WSIB.

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There were always forms that WSIB was sending me that I’d have to get the surgeon to fill out that were separate from the monthly forms. And then there was always the visit to the WSIB surgeon to make sure that I really was still injured, so you know, there was a lot of hoops to jump through.” There is no doubt that in order to get the compensation to which they were entitled, these injured workers had to exert extensive efforts to understand system requirements, obtain assistance from others, and work with medical personnel to obtain the medical documentation necessary to navigate the system. Not all workers find assistance or successfully navigate these difficult processes while struggling with their chronic injuries, which the first-hand autoethnographic accounts shared in chapter 8 also address. Indeed, many workers are like Namusa, who at the time of our interview remained outside of the workplace and still struggled to find assistance for her pending appeals. w o r k r e i n t e g r at i o n p r o c e s s e s

Ontario’s WSIB has a fairly detailed and specific work reintegration policy that is intended to match injured workers with meaningful tasks or jobs that meet their physical capabilities to help them reenter the workplace. The system mandates that workers return to work (and stop collecting WSIB benefits) as early as possible. In addition, human rights laws require employers, unions, and workers to co-operate in making accommodation plans in the workplace. However, most of those interviewed experienced difficulties immediately upon returning to the workplace, which led them to file appeals within the system. The problems they experienced ranged from being assigned tasks that did not match physical capabilities in the short term to difficulties in finding permanent assignment jobs that could accommodate their chronic injuries and illnesses in the long term. Bill, for example, returned to work a year after his injury in accommodated work doing a filing job. He was off WSIB benefits for five months when, in a dispute with the employer about whether he could bend and reach in the filing job, the doctor ordered him to stop work and get an MRI. He explained: And then they brought me back in to do light duties and it was a lot of filing. And I had to go to the bottom cabinet, stand up,

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back up and down, up and down, up and down. And I couldn’t do that. So I went to my family doctor, she gave me a note saying that I can’t do this. She has to order an MRI and I can’t work till she sees this. I told my boss that and then they cut me off. They never paid me for five months, nothing. Comp[ensation] never did anything. The company never paid me anything. Eventually, with the assistance of his union, he appealed and received retroactive benefits. Bill said that although the health and safety director intervened and modified his duties to suit his capabilities, in order to continue collecting compensation from WSIB he still had to meet onerous requirements. He continued, “They even said that if I’m off from work I have to get a medical report from my doctor, every time I’m off ... I spend $15 to get a note and send it to them. Do they reimburse my $15? No. I go to the Canadian Back Institute to get treatments, I go, they cut me off and say I’m not getting any better. So comp is not helping me very much.” Four of the injured workers tried numerous accommodations in different jobs before they found permanent positions that matched their capabilities given their chronic conditions. Going from job to job was a frustrating process because the workers lacked stability and did not feel as valued as they used to be. For example, when Barry moved from his spot on the assembly line to sorting papers in the cafeteria, he could no longer see his contribution as valuable. Even after returning to work, financial struggles continued. While injured workers typically focus on and return to work to maintain their income, once at work they may still face financial difficulties. For example, their chronic injuries can prevent them from working the overtime that they did before. As Bill explains, he no longer makes most unnecessary expenditures and he had not gone on vacation since his injury because he cannot afford it. He also explains how he goes to work in pain in order to maintain his income. For example, Bill said, “I can’t stay home. If I go home or stay home, the company only pays 65% of your wage. They even said that if I’m off from work I have to get a medical report from my doctor, every time I’m off. So if I’m off, say if I was off today with my back for two days, I can’t get in to see my family doctor like that [snaps fingers] it takes two weeks. By the time I get in to see her in two weeks I could be better. The pain is not there.”

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union collective agreements

MacEachen, Kosny, and Ferrier (2007) argue, “the [workers’ compensation] system pre-supposes a model of informed decisionmaking by workers who are knowledgeable about their rights and responsibilities and who are able to advocate for themselves in a pressure-free environment” (161). Accordingly, workers who can rely on a union to guide them through the process of seeking compensation and appropriate accommodation are in a better position than those who cannot. Four of the five workers we interviewed were union members and, as such, had access to union support and representation to help them navigate the compensation system, including the appeals process, and work reintegration arrangements. Their collective agreements outlined working conditions and as such provided clarity with regard to processes after injury. For example, three of these participants were able to secure modified work in part because of the collective agreements that were in force in their workplaces. For example, when Tom returned to modified work he was given clerical duties, which meant that his job classification was downgraded, as was his pay. With his union’s assistance he was eventually able to regain his original classification and the pay to match. Bill was also assigned clerical work to take his post-injury limitations into account, and he was able to carry out his duties. Yet, when other clerical workers complained that he was being paid more than they were, his employer moved him out of clerical work and into a different job. These workers’ experiences show that even though unionized workers with chronic injuries can turn to a union to protect their right to be accommodated in a job, grievance processes may balance other workers’ interests in areas such as pay or job postings. Also, employers in a unionized environment may prefer to avoid developing accommodation plans to assist injured and chronically ill workers if such plans could trigger grievances under a collective agreement and subsequent union involvement. Unfortunately, non-unionized workers such as Namusa do not have the support of a union or collective agreement language to provide a place to start when they sort out work reintegration arrangements, pay, and permanent accommodations for chronic injuries

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and illnesses. Such workers must search for other help and assistance as they navigate the employment system. When we interviewed Namusa, she had two legal cases pending and had made arrangements to have a government representative for one of them, but was being sent from one government office to another to find representation for her other case. w o r k p l a c e r e l at i o n s h i p s

The work environment is complex and is influenced by a variety of factors, including the demands of productivity, government regulations, and in some cases collective agreements. While all workers need to negotiate the work environment, those with chronic illnesses brought on by injury face the additional stress of needing to negotiate an environment that may not be sympathetic toward their need for accommodation (Baril, Clarke, et al. 2003; Coutu, Baril, et al. 2011). Typically, injured and chronically ill workers must deal with other employees’ negative perceptions, and relationships can suffer. As also addressed in chapter 6, when co-workers do not see any visible signs of impairment, they often wonder whether the impairments really exist or are as limiting as the workers claim. As Lippel (1999) argues, injured workers often need to continuously struggle to have their colleagues recognize their invisible injuries as legitimate. Dunstan and MacEachen (2012) emphasize that supervisors can set the stage for the successful or unsuccessful reintegration of workers by actively managing work reintegration plans rather than leaving it to the workers and their co-workers to sort out. However, privacy issues may limit the influence of supervisors’ roles in the reintegration process. As Dunstan and MacEachen (2012) found, co-workers’ resentment was often enhanced because privacy concerns prevented supervisors from sharing information about why accommodations were needed. Resentment is a particular problem for workers who manage invisible impairments, injuries, and illnesses. For example, Tom’s employer required that he continually substantiate his impairment with monthly reports from his physician, which left him feeling that no one (including his employer and compensation system) believed he continued to be disabled. In contrast, Bill felt supported in his claim about needing accommodation and was fortunate to have a supervisor who took an active role in ensuring that he did not exceed his medical capabilities. According to Bill,

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“[the supervisor] really watched what I did and if I did something that he didn’t think I should be doing, he was on my ass.” His supervisor’s attitude transferred to co-workers who helped Bill learn new computer skills. Bill told us, “[the supervisor] showed me some and then the IT guys we have there, they would help me out. If I got stuck, how do I do this, I could ask one of the ladies in the office and they would come and show me what to do. So it hasn’t been too bad.” At the same time, both Tom and Bill reported feeling isolated in their new work assignments. Both had previously been engaged in outdoor manual labour (at different utility companies) with other male co-workers, but after their injuries they were assigned to inside clerical work with mostly female co-workers. The change required adjustment because they no longer participated in the gendered camaraderie that had typically been part of their day when working with their male peer group. Neither felt comfortable socializing with their new co-workers because they did not see themselves as having anything in common. Consequently, both suffered from the loss of camaraderie, which could have helped them to develop positive work identities and good work relationships. Barry, who also worked for a very large employer on a production line, was placed in a difficult position from the beginning of his return to work. He was assigned accommodated work that involved sorting papers in plain view in the cafeteria, which was quite different from his previous job on the production line. Neither supervisors nor co-workers were supportive. Barry recalled that when his former co-workers passed him in the cafeteria, they made snide remarks about what he was doing. They saw a muscular, apparently healthy man sitting and not obviously doing much, while they were still tied to the production line. Barry explained, “It’s like darts are being thrown at you, people were making comments. I was just there to try to get myself back to work you know, and be useful in functioning again as I had always been in my old life.” Mary was particularly clear in pointing to difficulties with coworkers after she was given modified duties to accommodate her MSD. She reported: And because they can’t see it, it doesn’t exist [...] And you always have this issue with co-workers who don’t want to take on more work and then [get] a repetitive strain injury, nobody can see the

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injury. So it’s almost like it’s not there. So it would get busy and the expectation is although on – you’re on modified work, they wanted you to do your piece. So not only did you struggle with the management, you struggled with the co-workers. In our interviews, we found that even when workers’ injuries were visible at the outset and they received initial support and assistance, they faced negative perceptions when they did not recover and needed permanent accommodation. Such workers are “caught within a culture that blames them for their lengthy recovery and perceives their attempts at negotiation and control as resistance or not co-operating in the reintegration process” (Beardwood, Kirsh, and Clark 2005, 31). In their attempts to return to gainful employment, the workers we spoke with were confronted with the need to get approval, permission, and support, not only from the compensation system and treating physicians, but also from managers and co-workers. For Namusa, the only worker who had not reintegrated into the workforce at the time of our interview, the significance of perceptions and stigma (Beardwood, Kirsh, and Clark 2005; Kirsh and McKee 2003) was particularly clear. Namusa dealt with severe social isolation because of her impairments and because she no longer had paid employment. She felt so stigmatized that she avoided attending her mosque, a place she once felt comfortable that gave her the chance to socialize with people from her homeland. She avoided the mosque due to her physical limitations, because tradition required her to kneel and she no longer could. She said, “Everyone is looking at me because I’m sitting down [in a chair], I can’t sit on the floor. So I decided to stay at home.” conclusion

Reintegration following an occupational injury that results in an MSD-type chronic illness is not always straightforward or guaranteed. Those who acquire work-related chronic illnesses and injuries are put into direct conflict with a system that often expects people’s pain to go away and injuries to be easily diagnosed and healed. Yet, in the five cases discussed in this chapter, the workers acquired complex MSDs that were not immediately recognized as disabling and that required them to engage in prolonged negotiations about their need for accommodations. They found that they had to submit to

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seemingly unending medical attention to confirm their injuries and establish entitlement. The workers we discuss in this chapter had to address the ongoing problem of what to do in order to manage their pain in the face of their desires to maintain active involvement in the workplace. They felt that they had to choose between working through their chronic pain, losing time and money to stay home while in pain, or attempting to make an appointment with medical personnel to obtain a note to substantiate absences. None of these options was ideal for supporting a sense of well-being in the workplace. The four workers who were able to return to gainful employment were all union members. Namusa, a personal health care worker who was not unionized, had no such support. Not only did she not have a collective agreement that preserved her access to a job, she did not have help obtaining accommodation in her home workplace. Support from co-workers was a mixed bag. Barry felt ostracized by his co-workers, who questioned the severity of his invisible injury. But Tom and Bill, who returned to work in large utility companies with supportive management, did not suffer any harassment. They did, however, feel awkward about working in their new, predominantly women-populated environments. The stories we share here emphasize Stone’s (2003, 13) point that “being without work means that their [injured workers] place in the world is open to question,” whereas work allows them to maintain a sense of identity and meaning in their lives. The stories also illustrate that in order to successfully negotiate the Canadian workplace with chronic and invisible injuries, workers require access to support. The workers who had the greatest success were those who had access to support from organized labour, which suggests the importance of unions. The one who lacked this support remained alone, in pain, and in poverty. That this happens to people at all shows the need for a system that provides interventions and supports to Canadians with chronic illnesses such as MSDs. Systematic support is absolutely required for a fair, just, and compassionate Canadian society.

references

Baril, Raymond, Judy Clarke, Margaret N. Friesen, Susan R. Stock, ­Donald Cole, and the Work-Ready group. 2003. “Management of

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Return-to-Work Programs for Workers with Musculoskeletal Disorders: A Qualitative Study in Three Canadian Provinces.” Social Science & Medicine 57: 2,101–14. Beardwood, Barbara A., Bonnie Kirsh, and Nancy J. Clark. 2005. “Victims Twice over: Perceptions and Experiences of Injured Workers.” Qualitative Health Research 15(1): 30–48. Coutu, Marie-France, Raymond Baril, Marie-José Durand, Daniel Côté, and Geneviève Cadieux. 2011. “Health and Illness Representations of Workers with a Musculoskeletal Disorder-Related Work Disability during Work Rehabilitation: A Qualitative Study.” Journal of Occupational Rehabilitation 21: 591–600. Dunstan, Debra A., and Ellen MacEachen. 2012. “Bearing the Brunt: Co-Workers’ Experiences of Work Reintegration Processes.” Journal of Occupational Rehabilitation. 10.1007/s10926-012-9380-2. Kirsh, Bonnie, and Pat McKee. 2003. “The Needs and Experiences of Injured Workers: A Participatory Research Study.” Work 21(3): 221–31. Kuchinke, K. Peter, Alexandre Ardichvili, Margaret Borchert, Edgard B. Cornachione Jr, Maria Cseh, Hye Seung (Theresa) Kang, Seok Young Oh, Andrzej Rozanski, Urmat Tynaliev, and Elena Zav’jalova. 2011. “Work Meaning among Mid-Level Professional Employees: A Study of the Importance of Work Centrality and Extrinsic and Intrinsic Work Goals in Eight Countries.” Asia Pacific Journal of Human Resources 49(3): 264–84. Lippel, Katherine. 1999. “Therapeutic and Anti-Therapeutic Consequences of Workers Compensation.” International Journal of Law and Psychiatry 22(5–6): 521–46. MacEachen, Ellen, Sue Ferrier, Agnieszka Kosny, and Lori Chambers. 2007. “A Deliberation on ‘Hurt Versus Harm’ Logic in Early-Return-toWork Policy.” Policy and Practice in Health and Safety 5(2): 41–62. MacEachen, Ellen, Agnieszka Kosny, Sue Ferrier, and Lori Chambers. 2010. “The Toxic Dose of System Problems: Why Some Injured Workers Don’t Return to Work as Expected.” Journal of Occupational Rehabilitation 20: 349–66. Malenfant, Romaine, Andrée LaRue, and Michel Vézina. 2007. “Intermittent Work and Well-Being: One Foot in the Door, One Foot Out.” Current Sociology 55(6): 814–35. Ontario Network of Injured Workers (ONIWG). 2011. Poverty and the Injured Worker. Last modified 2 July 2012. http://www.injuredworkers online.org/politics/poverty.html.

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Schwartzberg, Neala S., and Rita Sher Dytell. 1996. “Dual-Earner Families: The Importance of Work Stress and Family Stress for Psychological Well-Being. Journal of Occupational Health Psychology 1(2): 211–23. Stone, Sharon-Dale. 2003. “Workers without Work: Injured Workers and Well-Being.” Journal of Occupational Science 10(1): 7–13. Vestling, Monika, Bertil Tufvesson, and Suzanne Iwarsson. 2003. “Indicators for Return to Work after Stroke and the Importance of Work for Subjective Well-Being and Life Satisfaction.” Journal of Rehabilitative Medicine 35: 127–31. Workplace Safety and Insurance Board (WSIB). n.d. “Prevent Musculo­ skeletal Disorders (MSD).” http://www.wsib.on.ca/en/community/wsib/ articledetail?vgnextoid=8964e35c819d7210vgnvcm100000449c71 0arcrd.

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Perspectives on Accommodating Chronic Illness

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Narrative Preface: Julie’s Story j u l i e d e va n e y

There’s a “good girl” narrative that pervades mainstream accounts of chronic illness. It goes like this: I was so conscientious, such a hard-worker, and then this illness took over my life. I was so successful until my body failed me and everything fell apart. My story follows a different arc. At twenty-two, I was successful, but in my own way. It was always important to me to have my own space and independence in which to complete my work than to prove myself according to others’ standards and fit into academic boxes. At twenty-two, when I started graduate school in a city far from home, I had no reason or personal context to understand how my approach might have a devastating impact on my life. There is an expectation in academia that students will defer to professors. I had an allergy to this type of behaviour. I was respectful, engaged, and always wanted to be treated as an equal. Based on my application and transcript, a well-known academic had contacted me to be her research assistant. I was thrilled. I saw no issue about balancing this work with the two jobs I already had set up and my coursework. In our first meeting, I was friendly and enthusiastic about the work, but definitely not obsequious. Then my body failed me and everything fell apart. I had not been a good girl. As usual, I was already behind on several projects and required my body to perform in its usual ways so I could pull all-nighters and work for a couple of weeks solid to catch up. I became horrifyingly ill. I spent months battling the healthcare system and was not given a diagnosis. I failed to meet any of my commitments. My employer fired me. She spoke about me to friends of

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hers and her words came back to me. She thought that I was taking advantage, that I was stealing from her, that I was not very bright. Other people were quick to characterize our dispute as a “personality conflict.” But up to this point, it had never mattered if employers “liked” me on a personal level, because I always came through with the work. In my second attempt at a master’s degree, I knew that not only did I have to be open about my illness and potential accommodations, but that I had to prove myself up front to insulate myself from the risk of someone who didn’t like me failing to believe me and creating dire consequences for my life and academic career. Though many of the professors at my next school were genuinely committed to accommodating me, I was incredibly harsh with myself and believed that I had to work harder than ever to be considered worthy. This behaviour often had difficult health consequences of its own. Now, in my thirties, I find the more self-directed my work is, and the less it is dictated by outside structures, the easier it is to accommodate myself. Being chronically ill in contexts like academia requires more than adjusting structures so we can perform like students who are well; it requires giving everyone the space to be ourselves.

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4 Employers’ Perspectives on Workplace Accommodation of Chronic Health Conditions r o s e m a ry ly s a g h t a n d t e r ry k r u pa

Workplace accommodation of chronic illness is a multi-layered issue that is best understood from several vantage points: the employee, the employer, the organization, and society as a whole. The process of workplace accommodation is seldom simple and its implications are many. Ultimately, accommodation is meant to be a win-win situation that retains a skilled worker, reduces productivity losses, builds workplace diversity and social integrity, and honours the individual worker’s right to an earned livelihood and social contribution. While legislation is important in providing a framework for fair treatment, the success of accommodation typically lies at the intersection of knowledge, goodwill, open relationships, and sensitivity to the needs of all stakeholders (Gates 2000; Lysaght and Larmour-Trode 2008). The employer and organizational perspectives on accommodation in Canadian workplaces are important, given their significance with respect to the mandate of the organization, the power and influence that these players hold over accommodation decisions and hiring and retention in general. Accommodations for workers with chronic illnesses typically fall into five major categories, which we summarize in Figure 4.1. We draw the categories indicated from the accommodations Statistics Canada identified in the Participation and Activity Limitations Survey and by a research group at Cornell, which generated a list of accommodations for use in research related to disability accommodation (Statistics Canada 2008; Bruyère, Erickson, and BanLooy

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Physical changes to the workplace • modifications to entryways, stairways, and handrails • elevator installation or modification • changes in lighting, temperature, or noise management Job-specific modifications • workstation adaptations (height, configuration, flooring, etc.) • ergonomic equipment (chairs, computer access, etc.) • technical or communication aids • provision of personal protective equipment such as wrist supports, shock absorbent boots, or hearing protection • provision of cognitive or sensory supports, such as timers, personal organizers, and text-to-speech readers Changes to job requirements • changes in job structure (e.g., when and where job duties are to be performed) • changes in job responsibilities (e.g., lifting restrictions or specific job tasks) • transfer to an alternate position • flexible work hours, break times, etc. Human supports • provision of interpreter, personal attendant, or job coach • changes in supervisory approach or availability • co-worker education Policy change • flexible interpretation of human resource policies around use of sick days, absences, etc. • alterations in standard workplace rules Supports outside the workplace • assistance with transportation to work • support for outside therapies Figure 4.1 Approaches to workplace accommodation

2004). Any of the accommodations listed may be relevant to workers with chronic illness and, as the ensuing discussion will demonstrate, the need and application of such accommodations are highly individual. While most apply to those with existing jobs, several are applicable in the recruitment and hiring stages.

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In this chapter, we profile a broad range of issues that employers navigate as they seek to accommodate the needs of workers with chronic illness, and the many challenges associated with the process. Understanding this issue as a dynamic process that unfolds differently in each case exposes the multitude of individual, organizational, social, and political factors involved and provides guidance for all stakeholders. w o r k p l a c e a c c o m m o d at i o n : a m u lt i fa c e t e d p r o c e s s

While accommodating chronic illness and impairment is often thought of as a two-way labour negotiation guided by human rights legislation or as a technical interchange involving the implementation of a number of work-related processes or equipment changes, the reality is far more complex. One challenge lies in the variable face of chronic illness. Another is the highly dynamic reality of contemporary Canadian workplaces. Consider the following: A single health condition may have a unique course in each worker who experiences it. • Many conditions present differently over time, and necessitate changing response patterns by the employer. • The impact of a condition on work tasks (i.e., the worker’s ability to perform essential job duties, even if modified) varies depending on job demands and the nature of the work environment, both of which change over time. • Responses to health conditions and accommodations within a work group will be as diverse as the group itself, based on each individual co-worker and supervisor’s attitudes and attributes, conditions particular to their work context, and co-workers’ proximity, in terms of work activities and responsibilities, to the person with a chronic condition. • A workplace’s capacity to respond to accommodation needs depends on a multitude of factors that range from knowledge, experience, and policy structure to financial stability. •

Though workplace accommodation in Canada is guided by federal and provincial/territorial legislative mandates and internal policy structures, it is essentially an individual process. It requires an understanding of a worker and their needs and abilities. An

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e­ mployer’s decision to accommodate and the quality of that accommodation emerge based on a number of factors, which we summarize in the form of a theoretical model (see Figure 4.2) based on a review of the literature on workplace accommodation. We validated the model through our own studies of workplace accommodation from the employer perspective (Lysaght, Krupa, and Gregory 2011). As the model demonstrates, a range of individual, organizational, social, and policy factors come together to influence an employer’s attitudinal and intentional disposition to accommodate. In the following sections, we discuss the factors that comprise this model and the varied ways in which they influence the nature and success of accommodation. i n d i v i d u a l fa c t o r s t h at a f f e c t t h e a c c o m m o d at i o n process

A number of factors exist at the level of the individual with a chronic illness that may affect the way the accommodation process unfolds. These fall into two broad categories: concrete issues around the capacity of the individual to do the work, and the subjective, interactional factors that nuance the relationship of the worker to other key players in the work context. Ability to Meet Work Expectations The need to accommodate is based first on the assumption that the worker has the requisite skills and qualifications for the job. The CHRA does not require employers to accommodate in the case of a worker who cannot perform the usual and essential job demands, but rather they must do what is necessary to eliminate systematic forms of disadvantage employees experience so that they can perform their work to the best of their abilities (Canadian Human Rights Commission 2010). This assumes a good job match and a careful analysis at the outset to ensure that all reasonable and necessary accommodations have been provided. The nature of the health condition may itself be associated with certain patterns of participation and/or capacity. For example, data from Canada suggest that 63.7 per cent of adults with workplace participation limitations due to ill health or disability have three or more health conditions (Furrie 2010). A greater number of health

The nature of the job Organizational capacity/flexibility Unionization Benefit structure Organizational culture, attitudes, and knowledge

Policy/social factors

Individual factors Quality of relationships with peers and managers Ability to meet role expectations

Disposition toward chronic illness and accommodation

Government regulations and legislation Strength of the economy Industry factors Social attitudes

Accommodation decision

Actions taken during worker recruitment, hiring, and employment that support or neglect worker needs

Figure 4.2 Factors that contribute to accommodation of chronic illness in the workplace

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Organizational factors

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conditions implies the possibility of greater impairment, which means that fluctuations in capacity are not necessarily attributable to a specific condition, but rather to the interaction between multiple conditions. Thus, an analysis based on one disabling condition alone does not explain or predict changes in capacity or the type of accommodation an employee will need. Even chronically ill workers who are well qualified for work and play a valued role as part of a work team may have fluctuations in their ability to perform work over time. Known as “intermittent work capacity” (Lysaght, Krupa, and Gregory 2010) or “episodic conditions” (Lightman, Vick, et al. 2009), these conditions are characterized by their waxing and waning nature. Many may be considered relatively predictable, such as kidney disease, where the worker can anticipate absences (e.g., for dialysis treatment) or periods of fatigue and low energy (immediately before dialysis). Others, such as migraine headaches, arthritic conditions, or some mental health conditions, may be less predictable, but the onset may come with warning signs and symptoms that allow individuals to anticipate changes in capacity. Still others present with little or no warning (e.g., diabetic coma, epileptic seizures) and may incapacitate the worker for a brief or extended period. From the employer’s perspective, some key problems emerge relative to such conditions. First, employers may find it difficult to provide accommodation when an employee’s absence or capacity is unpredictable. This can contribute to instability with respect to ensuring work coverage and planning. Second, workers should try to take responsibility for health management, so they can avert absences as much as possible through behaviours that can enable health. In our studies of employers’ attitudes toward workers with reduced capacity, attitudes were less open when employers perceived absences resulted from the worker’s failure to communicate needs or poor health management (Lysaght, Krupa, and Gregory 2010). A worker’s ability to self-manage their condition(s) and proactively seek accommodation will affect their ability to contribute effectively on the job and, in turn, others’ perceptions of them (a point emphasized in chapter 1 regarding the role of personal responsibility in self-managing fibromyalgia). Overall, the nature of the condition itself as it intersects with job requirements dictates the type of accommodation an employee requires. This human/occupation interaction dictates the changes to work tools, activities, processes, and schedules that are needed to

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ensure optimal performance. Thus, although a focus on human capacity rather than the impairment itself is important, employers must identify the specific accommodations needed to support performance while avoiding health decline for each chronically ill individual. In Canada and many other countries, privacy laws ensure workers’ right to keep health information private; however, individuals’ willingness to disclose the accommodations they need for optimal performance becomes a key factor in the success of accommodation. Multiple factors contribute to workers’ willingness to disclose accommodation needs. Reluctance relates in part to the difficulty in disclosing needs without making the nature of the health condition evident. Such reluctance is also associated with the stigma attached to certain chronic illnesses, and the perceived risks to job retention if such illnesses, or the potential for reduced capacity that goes along with them, are revealed (Macdonald-Wilson, Russinova, et al. 2011; Paraponaris, Sagaon, et al. 2010). Quality of Social Relationships Accommodations are usually most successful where a sense of belonging, reciprocity, and empathy characterizes workplace relationships. Employers are often more positively disposed to provide accommodations for a long-term employee who has been a strong contributor and demonstrated a good work ethic and corporate loyalty than for a new employee or job applicant, both of whom are unknown quantities (Canadian Apprenticeship Forum 2009). A number of factors contribute to the quality of work-related relationships. Cooperation, being agreeable and conscientious, and effective communication can result in a positive social reputation and increased support from co-workers. In contrast, employees who colleagues and employers perceive as unable or unwilling to resolve conflicts with peers may find fewer opportunities for alternative work arrangements. Impairments that require accommodation in the workplace may act as a trigger to dismiss those who are perceived as “difficult” employees (Williams-Whitt and Taras 2010). Employers use previous work history and work behaviours to predict and interpret employees’ performance (Williams-Whitt and Taras 2010). If employers perceive that employees break implicit or explicit organizational rules, they may use such behaviours as grounds for denying accommodation decisions, as demonstrated in

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chapter 3. On the other hand, when managers and co-workers have a positive impression of an employee with a chronic health condition, the accommodation process may be smoother (Lysaght, Krupa, and Gregory 2011). This development of goodwill based on actual contributions to the work context is a form of social capital and can be instrumental in eliciting support from others (Lysaght and Larmour-­ Trode 2008). Co-workers are often the ones who experience changes to their work and are required to take on responsibility for tasks that the individual with a chronic illness cannot perform. Such support may be an important factor in creating not only the conditions that are necessary for accommodation, but also a sense of acceptance that enables the worker with a chronic condition to continue in a job. There is a notion that some workers may be more valued in a workplace than others due to a range of factors, including their skill level and personality (Stone and Colella 1996). Workers with certain chronic illnesses may be more subject than others to stigmatizing attitudes and behaviours, and may even acquire an internalized sense of inferiority or inability to succeed. For example, mental health conditions have been associated with high levels of workplace stigma, which can be internalized by the individuals in question (Stuart 2006). o r g a n i z at i o n a l fa c t o r s a n d a c c o m m o d at i o n

There are many organizational challenges for employers to navigate in identifying accommodation needs, identifying solutions, and supporting the worker in a way that promotes optimal performance and a harmonious work environment. The Nature of the Job An employer’s ability to accommodate individual needs depends to large degree on key dimensions of the job itself. For example: The extent to which the job requires special training, registration, or licensing impacts the employer’s ability to replace workers who have frequent or unexpected absences, or who require other accommodations such as job sharing. • Jobs where continuous coverage is necessary, as in the case of assembly or production lines, make replacement of workers and/ •

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or flexibility around daily job demands difficult. For example, finding coverage for unpredicted absences for evening or night shifts can be problematic. • Jobs that involve project work where workers have high levels of control and autonomy can be beneficial for those who experience fluctuations in capacity or require flexible work scheduling. • Jobs that involve a high degree of customer contact may be difficult to manipulate in order to maintain necessary standards of service and the customer-agency relationship. For example, in human services jobs such as health care or education, the perceived quality of the service may depend on a certain worker continuously providing the service, and/or the service being dependably available. • High-level management positions pose particular problems with respect to accommodation, both because of the potential for limited flexibility related to coverage, and because of real or perceived power dynamics in negotiating these accommodations. For example, in our study of accommodation in the business, administration, and finance sector, one manager refused reasonable job accommodations because he was unwilling to appear “less able” to his employees and believed that the extra cost involved should be avoided. The nature of the job is also a concern when elements of work performance contribute to a worsening of the health condition and to a pattern of illness and absence (Frank and Chamberlain 2001; ­Pittman, Boyce, et al. 2010). For example, close proximity to children who frequently carry viruses may be a risk to the immune status of individuals undergoing cancer treatments; some workplaces in the food and beverage industry present ongoing risk to individuals with substance use issues; and fast-paced, high-demand offices with frequent deadlines may present a challenge for workers prone to anxiety and depression. In the most recent Participation and Activity Limitation Survey (PALS) in Canada, 10 per cent of workers with impairments reported that their reduced capacity “sometimes” or “often” was a result of working conditions (Furrie 2010). Institutional Capacity around Accommodation Our studies of employer attitudes toward accommodation revealed that employers have a wide range of knowledge and awareness of

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how and when to accommodate. Large organizations typically establish policies and procedures around reporting and accommodating illness or chronic conditions. They are also likely to have a human resources (HR) department, and many of these have a specialist in accommodation. Large, well-resourced workplaces frequently outsource these services; however, many report that frequent involvement of outside therapists and occupational health specialists can build the organization’s ability to recognize performance problems that may relate to a health condition, and to react in a proactive and effective manner. When a health and disability management specialist exists within an HR department, that individual typically brings and gains a wealth of experience as to how to interpret duty to accommodate and administer regulations in challenging and anomalous situations. They may also establish regular education programs or other learning and sharing opportunities for managers and workers to spread knowledge and expertise related to human rights, duty to accommodate, and other issues. Smaller workplaces often struggle to deal with accommodation issues, and lack the knowledge and resources to address everything from their obligations under the law to strategies for modifying jobs. Unionization Unions are common in certain work sectors in Canada (e.g., education, automotive industry, and public-sector workers), and they have a major influence on how impairment and chronic illness are managed. Unions often negotiate certain rights and procedures into collective agreements, which may contribute to the establishment of many of the rules and structures just described. They can also monitor whether or not members receive the accommodations they require (Lynk 2007; Lynk 2008). Unions also typically have job classifications and descriptions, ratings of jobs as to scale and ranking, and rules concerning how positions are posted and filled. As mentioned in chapter 3, one important provision can regard re-­deployment if accommodations require a permanent change in duties. Such provisions may work in favour of accommodation if a worker has seniority and is willing to accept a lateral move or reassignment to a lower ranked position, but they may be a disadvantage if an appropriate accommodation might necessitate a worker to assume partial duties of a position, or a portion of several jobs. They can also limit the

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ability to be flexible with respect to work duties across job positions (Krupa and Lysaght 2011). Benefit Structure The types of benefits employers offer affect individuals with chronic illnesses in a number of ways. The availability of paid sick leave, for example, influences workers’ ability to stay away from work when they need to, thus allowing them to effectively manage their conditions and remain employable over time. In our studies related to work accommodations, we learned that workers with limited sick leave benefits use their vacation days as sick days. While this solves the financial problems associated with time off work, it leaves employees without true vacation time (Krupa and Lysaght 2011). The availability of sick time benefits can eliminate the need for workers to over-extend themselves and exacerbate symptoms because they cannot afford to stay home. This may be particularly relevant in the case of workers with stress-related or mental health illnesses, or those for who pain and fatigue are major symptoms. The availability of short- and long-term disability benefits (STD, LTD) may also add resources to employers’ management of chronic conditions. One benefit is financial assistance with disability management services and workplace modifications that is associated with LTD. Insurance providers of the STD and LTD often apply considerable resources to addressing worker needs in order to restore work capacity (and get the worker off benefits). Such benefits can help a worker remain attached to the workplace in the case of impairment. In Canada, we have heard of cases where workers accepted a work “layoff” due to illness in order to qualify for Employment Insurance (EI) Sick Benefits (workers are eligible when income drops by 40 per cent or more). EI provides some degree of income stability, but does not help to ensure workplace accommodations or treatments that will enable a return to work. Again, sick leave benefits are more common in large workplaces and less common in industries with high numbers of casual and part-time employees. Overall, most large businesses offer at least a basic benefits package that provides sick leave, STD and LTD, and a pension to regular employees. Medium-sized businesses also typically offer some benefits, while many small businesses and micro businesses have no security or benefits.

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The Workplace Climate The overall climate within a workplace, in terms of worker support and attention to employee well-being, is also an important factor determining how workers are treated. One advantage of small workplaces is that they can be a cohesive workgroup with personal connections between workers. In our research, we found several workplaces that made accommodations beyond the point of reasonable hardship due to a commitment to longstanding or valued employees. Such commitment was reported lost when these organizations were bought out by multi-nationals or merged to create a larger conglomerate. In these cases, a focus on the bottom line, along with top-down approaches to managing workplace production, constrained the employers’ ability to offer local solutions to accommodation issues. In large or small organizations, supervisors are key in building a climate of respect and trust within work groups (Lysaght, Fabrigar, et al. 2012). This important role for supervisors is complicated by the fact that they can be held responsible for the bottom line of production and service at the worksite, and workplace accommodations can add a layer of complexity to meeting these demands. In our studies we found that some managers negotiate this by creating a workplace climate where it is expected that all workers (and not just those with chronic illnesses) will experience personal issues or challenges that will require some form of support and accommodation that needs to be supported by a cohesive work unit. p o l i c y a n d e n v i r o n m e n ta l fa c t o r s a n d a c c o m m o d at i o n

Legislation Canadian human rights legislation in most jurisdictions requires that employers provide reasonable accommodation of disabling impairments to the point of undue hardship. Documents such as the United Nations Convention on the Rights of Persons with Disabilities (United Nations 2006) assert the rights of all people to work, and local legislation, such as the Canadian Human Rights Act (Department of Justice 1985), the Americans with Disabilities Act of 1990 (ADA) in the United States (Department of Justice 2009), and the Disability Discrimination Act in Britain (National Archives

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1995) provide more specific guidance as to the rights of all people under the law. However, employers and employees alike often poorly understand such legislation; interpretation may be loose, enforcement is often non-existent, and there are multiple examples of direct or indirect discrimination arising from stigma and other concerns (Cockburn, Krupa, et al. 2006; Oliver and Barnes 1998; Sloane and Mackay 1997; McMahon and Shaw 2005). In positive terms, human rights legislation has led to the development of policies and programs that support the hiring and management of people with chronic illnesses, particularly in larger companies and publicly-funded agencies (Domzal, Houtenville, and Sharma 2008). The duty to accommodate is generally well known, even if organizations frequently lack the expertise or will to act. A US study revealed that just 29 per cent of companies surveyed have a disability accommodation policy or program, and large companies were twice as likely as small or medium companies to have such a program (Harris Interactive 2010). Canadian studies support this finding and suggest that most major employers, particularly in unionized environments, have established clear criteria as to how sick leave, STD and LTD leave, and on-the-job accommodations are to be implemented (Crooks, Stone, and Owen 2011; Lysaght, Krupa, and Gregory 2010). Proactive strategies to avoid illness onset or exacerbation and to educate the workforce on recognizing and responding to health and disability needs are slowly developing in most Canadian industries. Some companies offer health-related benefits in the form of funds to go toward gym memberships or other employees’ fitness costs. To address accommodation needs, most workplace policies in Canada require chronically ill workers to provide some evidence from a physician or other health professional that documents their needs. Candidates for long-term disability insurance or a disability pension must typically demonstrate complete inability to work for a defined time period. Such rules, and the presence or absence of flexible sick leave benefits, fail to recognize partial capacity or support the movement of individuals with chronic illnesses in and out of the workplace (McKee 2008). This situation is lose-lose, since the insurer may end up paying out full benefits to workers who are capable of working to some degree, the employer may lose worker skills and knowledge, and workers may wind up with reduced income and become disengaged from a means of social contribution.

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Economic Factors Labour market conditions and companies’ ability to deal with workforce capacity fluctuations are important factors that dictate the accommodation-related response to impairment. Economic theory predicts that the least productive workers, which may include some workers with chronic illnesses and fluctuating or reduced capacity, are the first to be let go during an economic downturn. In addition, certain trends in the way work is done emerge in tough economic times, which lead employers to become increasingly more rigid as they strive for workplace efficiency. Approaches such as multi-tasking for individual workers, reduced on-the-job training, and demands for greater work output by a smaller workforce make it difficult for workers with reduced capacity to compete (Wilton 2004), and can stretch the limit of workers attempting to reconcile growing production demands with a shrinking workforce and accommodation needs. Industry Factors Our research on accommodation strategies indicates that some industries are more able than others to accommodate workers with chronic illnesses and the occasional need for time away or a reduced workload. For example, in some employment situations such as in public school teaching or transportation services, backup workers are readily available. Some jobs are more specialized than others, and as the training and skills required increase, the availability of qualified staff to cover for an absent worker decreases. If a line worker in a factory that rotates workers through a full range of positions requires time off, it is easier to temporarily replace that worker than one in a job that requires highly technical skills possessed by only them. Service industries such as health care or retail require a consistent and steady workforce, as opposed to industries that are project or case work-based and can extend tasks over several months. Research indicates that larger workplaces and public agencies are more likely to hire workers with accommodation needs as compared to smaller workplaces and those in goods- and service-producing industries (Domzal, Houtenville, and Sharma 2008). Canadian data reveal differences in the rates of hiring disabled people across sectors (Furrie 2010), with disabled people being disproportionately

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­ ver-represented in the health and social services sectors and undero represented in the professional, scientific and technical, manufacturing, food services, and retail sectors. These differences may point to varying ability within these fields to attract or accommodate people with chronic illnesses. Depending on the industry, educators or recruiters may systematically discourage people with some disabilities or illnesses from entering training or job searches in certain fields (i.e., those with high physical or educational demands) based on stereotyped expectations or protectionism. Differences based on workplace size may relate to the financial resources of the companies, or the likelihood that they will provide health and other benefits. Attitudes Employers’ and managers’ attitudes and beliefs about particular illnesses and impairments can affect their willingness to accommodate chronically ill individuals and affect the nature of accommodation decisions. PALS data from 2006 reveal that 38.7 per cent of Canadian workers with participation limitations reported having often experienced discrimination in the workplace. Of those who perceived some form of discrimination, 3 per cent reported that they had been denied accommodation (Statistics Canada 2008). Canadian workers with intermittent capacity who have had multiple interruptions in workforce participation have reported stigma and discrimination based on perceived incapacity when none existed (Shier, Graham, and Jones 2009; Vick and Lightman 2010). Individuals with chronic illnesses often cite such experiences, and perhaps the general perception that employers will view reduced capacity negatively, as factors that reduce their willingness to report a chronic illness and request reasonable accommodations. Perhaps the most stigmatized of all chronic illnesses is mental illness. A recent model of stigma related to mental health in the workplace suggests that attitudes are based on a range of assumptions about a worker’s capacities (Krupa, Kirsh, et al. 2009). Beyond general negative assumptions about competence and productivity, questions about the legitimacy of an illness often arise. Another negative assumption that may limit willingness to hire is the belief that people with mental illnesses should not work because the stress and demands of work will exacerbate their illness. The stigma model also highlights how these assumptions can vary across key players

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in the work environment, and the variable expression of workplace stigma based on mix of individual attitudes at various levels of the organization. The authors suggest, for example, that employers and company owners may be especially concerned about productivity given their responsibility for the economic bottom line, but this may be countered by their role in ensuring individual workers’ rights are satisfied. By comparison, the human resource pressures that affect their ability to meet productivity and social goals in the workplace often influence management-level personnel’s attitudes and actions. While this is specific to mental illness, the principles may apply to other chronic illnesses that are perceived as influencing, and being influenced, by work participation. Wilton (2004) notes that some employers preferentially hire workers who “look the part” or are able to behave in a prescribed way, which may exclude some workers from certain jobs. For example, some work positions are identified as requiring a friendly attitude or the ability to respond, maintain, and promote emotional calm during intense situations. “Aesthetic” work (where the worker is expected to look a certain way to build consumers’ confidence) is also a factor that may reduce the perceived value and employability of workers with some forms of mental illness or visible impairments caused by chronic illness, which can in turn reduce the likelihood they will be hired, accommodated, or retained. a c c o m m o d at i o n o u t c o m e s

The ultimate goal of accommodation is to identify a working solution that retains the skills of the worker with a chronic illness, maximizes profitability, encourages individual growth, contributes positively to workplace climate, and builds a diverse and vibrant workforce. While employers often cite the costs of accommodations as a factor that leads them to refuse accommodation requests, studies have demonstrated that employers experience a number of financial and social benefits when they retain workers who have chronic illnesses and intermittent capacity on the job. These benefits include: increased productivity, resulting from maintaining a consistent workforce of trained and productive workers; • reduced sick leave compensation paid to workers who are not producing, as well as savings on payments to replacement workers; •

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lower disability insurance costs associated with a better claim history; and • a reduced need for worker recruitment, hiring, and training, all of which place high demand on HR personnel, and are costly to the organization (Lysaght, Krupa, and Gregory 2010; Schartz, ­Hendricks, and Blanck 2006). •

Types of Accommodation There are three main types of accommodation: pre-employment accommodation, physical accommodation, and cognitive/psychological accommodation. Employers can provide pre-employment accommodations in order to facilitate participation in an interview or a pre-employment assessment. Potential employees with chronic illnesses, such as those involving chronic pain, visual disturbances, anxiety, or neurological impairments, may require accommodations such as modified interview time or conditions, special seating, additional testing time, or special equipment to complete a test (Styers and Shultz 2009). Many job applicants do not seek pre-employment accommodations because they worry about the substantially negative consequences of revealing their impairments before they receive an offer of employment. Many Canadian employers, even those who have hired workers with “special needs,” report that they did not accommodate during the interview process, as they were unaware of the accommodation needs at the time (Canadian Apprenticeship Forum 2009). Physical accommodations constitute structural modifications in the workplace and tend to require a one-time intervention and expense if the condition is non-progressive. Thus, employers typically regard such accommodations as the least difficult to provide (e.g., Lysaght, Krupa, and Gregory 2011). These accommodations include modifications to job-specific tools or equipment, changes to make the work environment accessible, computer modifications, sensory aids, or changes to lighting or office design to reduce noise and distractions (Cohen, Goldberg, et al. 2008; Statistics Canada 2008; Hartnett, Stuart, et al. 2011; Gewurtz and Kirsh 2009; ­Williams, Sabata, and Zolna 2006; Sabata, Williams, et al. 2008; Canadian Apprenticeship Forum 2009). Employers often perceive such accommodations as expensive, but studies in Canada and the US reveal that this is not the case. For example, a 2005 study by the

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Canadian Abilities Foundation revealed 52 per cent of employers estimated the average annual cost of accommodation per worker to be less than $500 (Canadian Abilities Foundation 2005) and fewer than 20 per cent anticipated costs of over $1,500. This finding supports an earlier American study (Schartz, Hendricks, and Blanck 2006) that found that 74 per cent of accommodations had a first year cost of US$500 or less. Most cognitive/psychological accommodations involve changes to work processes or the social climate, such as job redesign, the adaptation of discrete job tasks, job sharing, alternative break schedules, home-based work, or temporary job reassignment. They may also include provision of human supports in the form of mentoring, job coaching or other social supports, strategies to reduce job stress, or relaxation of workplace policies around practices such as the use of sick time or shift rotations. Cognitive aids, such as electronic schedulers and timers, might also be considered for workers with cognitive impairments (Cohen, Goldberg, et al. 2008; Statistics Canada 2008; Hartnett, Stuart, et al. 2011; Gewurtz and Kirsh 2009; Williams, Sabata, and Zolna 2006; Walls, Batiste, et al. 2009). While a skilled HR specialist or external ergonomics consultant can typically provide physical accommodations, this type of “soft” accommodation requires strong communication skills and sensitivity to individual needs. Encouragingly, many Canadian workplaces have undertaken supervisory training in the management of mental health in the workplace in order to build awareness and reduce stigma (Lysaght, Krupa, and Gregory 2011). conclusion

The nature and degree of a worker’s incapacity to work due to chronic illness depends on the relationship between the functional abilities of the worker and the demands of the job at any point in time. Further, the nature of the work environment and the job are critical to how capacity is expressed and dealt with. Although the common perception is that Canadian employers are reluctant to accommodate chronic illness and impairment, our research shows that a complex inter-relationship of experiences and events shapes attitudes. Many employers demonstrate a strong commitment to accommodation, but small employers often lack the skills, knowledge, or experience to effectively deal with the work interruptions

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or modifications that may emerge with a chronic illness. Overall, there are many motivations for hiring and retaining workers with chronic illnesses, particularly those with a strong skill base who contribute to the workplace. Best outcomes are typically achieved through an interactive, problem-solving approach that is based in open communication and uses available resources and expertise. Employees with chronic illnesses can boost the probability of successful outcomes by building strong connections in the workplace, proactively managing both their health condition(s) and the impact on the work environment, and assertively identifying their accommodation needs and solutions. In this chapter, we have presented a model of workplace accommodation that brings together the multiple factors that affect an employer’s decision to accommodate. The model illustrates the complexity of this decision and the potential contributions of organizational, social, and individual factors to the outcome. These factors also suggest vehicles for intervention. Individual workers, for example, might examine their perceived value to a company. Advocates and supervisors might consider how organizational culture or union rules support or hinder organizational responsiveness to individual needs, and look for ways to adjust this. Overall, the model helps us to consider accommodation from a holistic perspective and a range of strategies to maximize workforce participation for individuals with chronic illness.

references

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– 2011. Accommodations in the Workplace for Workers with Disabilities. Ottawa, ON: Human Resources and Skills Development Canada Lysaght, Rosemary, Leandre Fabrigar, Sherrey Lamour-Trode, Jeremy Stewart, and Margaret Friesen. 2012. “Measuring Workplace Social Support for Workers with Disability.” Journal of Occupational Rehabilitation 22(3): 376–86. 10.1007/s10926-012-9357-1. Macdonald-Wilson, Kim L., Zlatka Russinova, E. Sally Rogers, Chia Huei Lin, Terri Ferguson, Shengli Dong, and Megan Kash Macdonald. 2011. “Disclosure of Mental Health Disabilities in the Workplace.” In Work Accommodation and Retention in Mental Health, edited by Izabela Z. Schultz and E. Sally Rogers, 191–217. New York, NY: Springer. McMahon, Brian T., and Linda R. Shaw. 2005. “Workplace Discrimination and Disability.” Journal of Vocational Rehabilitation 23(3): ­137–43. McKee, Eileen. 2008. “HR Has Pivotal Role in Episodic Disabilities.” Canadian HR Reporter 21(4): 18. National Archives (UK). 1995. “Disability Discrimination Act 1995.” http://www.legislation.gov.uk/ukpga/1995/50/contents. Oliver, Michael J., and Colin Barnes. 1998. Disabled People and Social Policy: From Exclusion to Inclusion. New York, NY: Longman. Paraponaris, Alain, Luis Sagaon Teyssier, and Bruno Ventelou. 2010. “Job Tenure and Self-Reported Workplace Discrimination for Cancer Survivors 2 Years after Diagnosis: Does Employment Legislation Matter?” Health Policy 98: 144–55. Pittam, Gail, Melanie Boyce, Jenny Secker, Helen Lockett, and Chiara Semele. 2010. “Employment Advice in Primary Care: A Realistic Evaluation.” Health and Social Care in the Community 18: 595–606. Sabata, Dory, Michael D. Williams, Karen Milchus, Paul M.A. Baker, and Jon A. Sanford. 2008. “A Retrospective Analysis of Recommendations for Workplace Accommodations for Persons with Mobility and Sensory Limitations.” Assistive Technology 20: 28–35. Schartz, Helen A., D.J. Hendricks, and Peter Blanck. 2006. “Workplace Accommodations: Evidence Based Outcomes.” Work 27: 345–54. Shier, Michael, John R. Graham, and Marion E. Jones. 2009. “Barriers to Employment as Experienced by Disabled People: A Qualitative Analysis in Calgary and Regina, Canada.” Disability & Society 24: 63–75. Sloane, Peter J., and Daniel Mackay. 1997. “Employment Equity and Minority Legislation in the UK after Two Decades: A Review.” International Journal of Manpower 18: 597–626.

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Stone, Dianna L., and Adrienne Colella. 1996. “A Model of Factors affecting the Treatment of Disabled Individuals in Organizations.” Academy of Management Review 21: 352–401. Statistics Canada. 2008. Participation and Activity Limitation Survey 2006: Labour Force Experience of People with Disabilities in Canada. Ottawa, ON: Statistics Canada. http://www.statcan.gc.ca/pub/89-628x/89-628-x2008007-eng.pdf. Stuart, Heather. 2006. “Mental Illness and Employment Discrimination.” Current Opinions in Psychiatry 19: 522–6. Styers, Bridget A., and Kenneth S. Shultz. 2009. “Perceived Reasonableness of Employment Testing Accommodations for Persons with Disabilities.” Public Personal Management 38: 71–91. United Nations. 2006. “Convention on the Rights of Persons with Disabilities.” http://www.un.org/disabilities/convention/conventionfull.shtml. Vick, Andrea, and Ernie Lightman. 2010. “Barriers to Employment among Women with Complex Episodic Disabilities.” Journal of Disability Policy Studies 21: 70–80. Walls, Richard T., Lucas C. Batiste, Linda C. Moore, and Beth Loy. 2009. “Vocational Rehabilitation and Job Accommodations for Individuals with Substance Abuse Disorders.” Journal of Rehabilitation 75(4): 35–44. Williams, Michael, Dory Sabata, and Jesse Zolna. 2006. “User Needs Evaluation of Workplace Accommodations.” Work 27: 355–62. Williams-Whitt, Kelly, and Daphne Taras. 2010. “Disability and the Performance Paradox: Can Social Capital Bridge the Divide?” British Journal of Industrial Relations 48: 534–59. Wilton, Robert D. 2004. “From Flexibility to Accommodation? Disabled People and the Reinvention of Paid Work.” Transactions of the Institute of British Geographers 29: 420–32.

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5 Supervisors’ Perspectives on Work Accommodation for Chronically Ill Employees v i c k i l . k r i s t m a n , w i l l i a m s . s h aw , a n d k e l ly w i l l i a m s - w h i t t

It is well documented that mental health issues and musculoskeletal disorders are the most prevalent causes of work disability ­(Henderson, Glozier, and Elliot 2005). The International Classification of Functioning, Disability and Health defines disability as a complex phenomenon that reflects the interaction between the body and the environment (World Health Organization 2012). Work disability involves an underlying cause (illness or injury) that results in limitations that prevent an individual from fully participating in the activities that are usually part of a particular job. Illness or injury alone does not result in work disability – it occurs only when the illness or injury prevents the individual from engaging in some or all elements of the job. With an aging workforce in Canada, chronic health conditions that contribute to work disability, including cardio-respiratory issues and cancer, are increasingly prevalent (Henderson, Glozier, and Elliot 2005; Pryce, Munir, and Haslam 2007). For those with chronic illness, sickness absence or work disability is not solely determined by ill health, but is also influenced by factors such as work environment and social support (Rael, Stansfeld, et al. 1995). Many players can be involved in managing individuals with chronic conditions’ return to work depending on the rehabilitation and compensation context, as well as the type and severity of the i­llness

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or disorder. These players may include health care professionals, employers, insurers, unions, peers, and the workers themselves ­(Loisel, Buchbinder, et al. 2005). A review of workplace-based return to work interventions found that the duration of work disability for chronically ill employees can be reduced by early contact by the workplace with the worker, the offer of reasonable “work accommodation,” contact between healthcare providers and the workplace, and having an individual responsible for coordinating the return to work effort (Franche, ­Cullen, et al. 2005). Although an employer’s occupational health staff (e.g., nurses and case managers) can contribute to rehabilitation and assist in the return to work process, it is usually the immediate supervisor who is the focal point for integrating the employee once a return to work is initiated (Gates 1993). Studies have investigated supervisors’ attitudes, considerations, needs, and responses when making accommodations upon the return to work for a number of chronic illnesses and disorders, including: mental health issues ­ (Nieuwenhuijsen, Verbeek, et al. 2004; Lemieux, Durand, and Hong 2011); musculoskeletal disorders (Shaw, Robertson, et al. 2006), especially low back pain (Wrapson and Mewse 2011); cancer (Pryce, Munir, and Haslam 2007; Amir, Wynn, et al. 2010); and myocardial infarction (Kushnir and Luria 2002). Our purpose in this chapter is to discuss the results of preliminary, qualitative research that assesses supervisor perspectives and responses when accommodating employees who are returning to work with a chronic work disability. We begin with a brief review of existing research concerning the supervisor’s role in accommodation. Next, we explain our methods and discuss the factors that influence a supervisor’s accommodation of a returning employee. We discuss four broad categories, including supervisor factors, employer factors, provider factors, and returning employee factors. Within each category we illustrate sensitizing concepts with interview quotations. We then develop propositions for future testing based on the categories and concepts from this initial qualitative work. t h e s u p e r v i s o r ’ s r o l e i n a c c o m m o d at i n g c h r o n i c a l ly ill employees

Supervisors are frequently responsible for identifying suitable duties and hours for returning workers (Kenny 1999), and can be

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c­ onsidered important gatekeepers and facilitators of temporary or permanent job modification. Supervisors may need to interpret medical restrictions, document job demands, brainstorm possible accommodations, order special supplies, create modified duty positions, temper production demands, alter workstations, adjust work schedules, monitor adherence to medical restrictions, engage co-workers to provide assistance, communicate with providers and insurers, and monitor the effectiveness of job accommodations over time. A supervisor can create a positive work environment for returning workers by identifying and solving problems that might arise due to a chronic illness and determining how work tasks can be broken up into manageable duties for those with reduced functional capacity (Gates 1993). A number of studies have found that where supervisory support is low, time off work increases (Krause, Dasinger, et al. 2001; ­Feuerstein, Berkowitz, et al 2001; Tubach, Leclerc, et al. 2002). Researchers have speculated that perceptions of poor supervisor support may coincide with an unwillingness of supervisors to allow temporary leeway, facilitate job modifications, or communicate empathy and concern after a workplace injury or illness is reported (Krause, Dasinger, et al. 2001; Feuerstein, Berkowitz, et al. 2001). Workers have high expectations that a supervisor will provide compassionate personal guidance and support in the event of work disability, especially with regard to meaningful, ergonomically sound, and non-pejorative job accommodations (Shaw, Robertson, et al. 2003). These expectations might be due to the fact that an outpouring of support is anticipated to reward injured workers for their dedication and commitment, that workers hold supervisors responsible for job accommodation efforts, and that workers look to supervisors for support in a time of crisis. In recognition of the important role supervisors play, a number of studies have been conducted that investigate the effect of training programs geared toward increasing supervisor efficacy in accommodation efforts (Håland Haldorsen, Jensen, et al. 1997; Linton 1991a; Linton 1991b; Pransky, Shaw, and McLellan 2001; Shaw, Robertson, et al. 2006). The content of such programs has focused on improving communication, applying ergonomic principles, building empathy for affected workers, and showing greater willingness to modify work demands. The mode of training has generally been to hold brief, discussion-oriented workshops with small groups

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of supervisors and professional facilitators during working hours ­(typically lasting two to four hours total), and the limited studies in this area have shown that supervisors well-receive and value such programs in physically demanding work environments (Linton 1991a; ­Linton 1991b; Pransky, Shaw, and McLellan 2001; Shaw, Robertson, et al. 2006). Positive outcomes from supervisor training programs include supervisors who proactively contact workdisabled employees, change work routines and work techniques to accommodate disabled workers (Linton 1991a), and have a positive, supportive attitude toward the employee (Linton 1991b). Supervisor training designed to teach supervisors to communicate more effectively with returning employees has been shown to increase supervisors’ confidence in being able to accommodate disabled workers and reduce disability costs (Shaw, Robertson, et al. 2006). Despite the increasing prevalence of supervisor training programs in Canada, disabled workers continue to report varying levels of assistance and support for accommodations when they return to work, which results in substantial variability in attitudes and beliefs about the need for job accommodation (Williams-Whitt 2007), a point also made in chapter 4. Although the benefits of job accommodation are well established in the scientific literature, little research has focused on explaining individual differences in supervisors’ efforts to support job accommodation, particularly for those with chronic impairments. This information is critical to refine and improve existing workplace intervention strategies to prevent work disability, which is why it serves as the focus of this chapter. fa c t o r s t h at i n f l u e n c e s u p e r v i s o r s ’ e f f o r t s t o s u p p o r t j o b a c c o m m o d at i o n

To better understand how supervisors think about accommodating chronic conditions and the factors that influence their efforts, we collected and analyzed data using grounded theory methods (Strauss and Corbin 1990). Since we were attempting to capture as much of the phenomenon as possible, data collection took place over the course of several individual research efforts and across a range of industries in both Canada and the United States. These efforts included focus group discussions and semi-structured interviews with supervisors, employees, and workplace safety and health professionals (Shaw, Robertson, et al. 2003; Shaw and Huang

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2005). We also made observations as we conducted pilot supervisor ­training programs in job modification and disability prevention ­(McLellan, Pransky, and Shaw 2001; Shaw, Robertson, et al. 2006; Shaw, R ­ obertson, et al. 2006). All interviews, focus groups, and training programs were conducted in Canada (Alberta or Ontario) or the United States (Pennsylvania, Massachusetts, Rhode Island, Maine, North Dakota, or Minnesota) across public and private employment settings. Employment sectors included health care, the mail industry, construction, and municipal governance. Participants included immediate supervisors, middle managers, occupational health nurses, return-to-work coordinators, claims adjudicators, and employees with chronic impairments. We analyzed observations and interview transcripts individually, and developed categories independently, but the themes we describe in the following sections represent categories and concepts that all three authors consistently observed. In our research, we identified supervisor beliefs and practices, worker characteristics, perceptions of usual employer policies and practices, and healthcare providers’ recommendations and engagement as factors that influence supervisors’ efforts to provide job accommodations (see Figure 5.1). In general, supervisors clearly recognize the value of providing temporary job accommodations to workers who need them, and support their organizations’ efforts to promote these policies and practices (Shaw, Robertson, et al. 2006). However, no system is perfect, and most supervisors are candid about the difficulties of coordinating job accommodations amidst the challenges of hectic work schedules, the impracticalities of some job accommodation requests, high production demands, and the need to maintain cooperation among workers (Shaw, ­Robertson, et al. 2006; Williams-­Whitt 2007; B ­ lackman and Chiveralls 2011). In the sections that follow, we highlight the principal factors that influence supervisors’ roles in work accommodations found in our research. e m p l o y e r / i n d u s t r y fa c t o r s

Physical Job Demands Some supervisors indicated that job accommodations for chronically ill workers returning to work are more difficult to provide when a job involves heavy or strenuous work (e.g., climbing telephone

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Figure 5.1 Factors that influence supervisors’ abilities to support, recommend, or coordinate job accommodations for chronically ill employees

poles) or high postural demands (e.g., driving for long periods), especially when these elements of the job are frequent activities that are difficult to alter. An added complication is that the most physically demanding jobs often have the lowest wages, and accommodations sometimes require that higher-wage workers take over more menial or physically demanding tasks for the worker with an impairment. As the following quotations illustrate, in these cases job modification sometimes seemed unfair, as if to reward entrylevel workers with few skills, and penalize more skilled and tenured workers. One manager said, “I’ve got a 64 year old [employee] working here that’s never been injured. She is the fastest, most efficient [employee] I have, she’s never been injured. And yet we have a little pup out for two years, been injured twice on WCB. How is that?” Another reported: “We had one particular person who, as

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soon as they walked on the unit announced to the whole world that they are just returning from an injury and their shoulder is so sore and they can’t work and ‘maybe I’m back too soon.’ Well, now the responsibility has shifted from the individual to the rest of the staff to care for this individual.” Where physical job demands are particularly strenuous, managers are also concerned about the well-being of co-workers who now perform the most difficult tasks on a more frequent basis. They worry about the potential of triggering chronic strain injuries, as well as the difficulty of finding work for the increasing number of employees who become disabled. Departments with high demands quickly reach a saturation point and simply have no modified work left for anyone else who becomes work disabled. According to one manager: “I think we should be making an attempt to accommodate people ... I believe in that ... As a manager my concern is ... that we have almost put the remainder of the staff who are still healthy at risk. Because they are having to assume the load of people who are not able and are restricted, whether it is a permanent restriction or even a temporary restriction.” One occupational health manager reported: “The smaller the department is the harder it is, that saturation point decreases right. If you’ve got three people in a department and two have to be accommodated that’s almost impossible.” Furthermore, supervisors indicate that workers in positions with high physical demands are often unlikely to ask their co-workers for help, which makes it difficult to adhere to physician-recommended restrictions. As one manager said: “We have all this new equipment for lifting and the staff are using it more religiously now, with extensive training. But you have to repeatedly remind them about the equipment because [they] are notorious for saying ‘I don’t have time, I just did it by myself.’” From these observations, we propose that work accommodations are more difficult for supervisors to arrange when the job involves more physically demanding tasks or when organizational constraints allow less flexibility of tasks. Health and Wellness Culture In most workplaces, attitudes about workplace safety and hazard prevention are well-established; however, there is some variability in the way that employees and managers understand company

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­ olicies concerning worker health and wellness. Many managers p feel that employee health is a private issue, and not an appropriate topic for discussion between workers and supervisors. Some supervisors are concerned that any discussion with workers about personal health problems (even those resulting from a work injury) might be interpreted as a form of prejudicial or discriminatory treatment. As one manager stated in his interview: “The less I know about the employee’s condition, in my job, the better off I am because I don’t want to know.” Thus, supervisors exhibited a general recalcitrance to get involved in what they perceived to be workers’ private health problems, and this could sometimes impede job accommodation efforts. As a way to avoid the problem outlined above, some supervisors adopt a “non-medical” language that is useful to avoid medical disclosures when talking with affected workers (e.g., “What are you able to do?” rather than, “What is your diagnosis?”). This may reflect current legal restrictions in Canada where employees are not required to reveal their diagnoses, even if they request or receive job accommodations. Some managers willingly accept these legal restrictions on diagnosis disclosure because they still receive information about the employee’s abilities and limitations. Paralleling points made in chapters 1 and 2, some are simply uncomfortable with the personal nature of a medical diagnosis. However, other managers indicated that privacy laws are overly restrictive and impede their ability to accommodate: “So my phone calls are going out – how is she doing? Do you have any idea how long it’s going to be? That’s basically one of the reasons why we’re calling. Should we post this position? ... It’s very difficult to give us a timeline. But at least I need a progress report. Are they seeing someone or complying with some [treatment] program? And they can’t tell you that.” Another said: “Look if I can better understand your problem, I can work with you to help you fix it.” However, privacy concerns are less dominant in companies with active worksite health promotion programs (e.g., walking programs, subsidized gym memberships), and in companies with an aging workforce where physical health impairments and chronic health conditions were more commonly dealt with. As one accommodated employee commented: “You don’t very often hear we’re accommodating this person because of this. They’re just saying well she sprained her back the other day so she can only do [a limited number of duties]. And you’re like, ‘oh great.’ And then you

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don’t think nothing more of it ... It’s just a process, because all of us get sore backs at one time or another.” From these observations about privacy, we propose that supervisors are more effective in facilitating job accommodations when the workplace advocates a more open exchange with workers about health-related concerns, where the workforce demographic is older, and where accommodating work disability is common. Disability Management Practices Even within the same company, supervisors indicate that they have very different roles in the job accommodation process. Some state that job accommodation arrangements are simply handed to them (by the human resources department or disability case manager) and they have no input into the decision-making process or translation of medical restrictions. This leads to frustration, as supervisors are sometimes asked to implement job accommodations that are nearly impossible given a specific job’s constraints and circumstances. Examples provided by participants include asking a mechanic to avoid awkward postures or asking a driver to avoid long periods of sitting. One manager’s question about the process highlights the challenge: “Why are we having somebody trying to drive the bus from the back of the bus? The manager is accountable for it, the manager is responsible for that person, the manager is responsible for the budget of that person of their people, why aren’t they the ones forcing the process?” Other supervisors described a more participatory, iterative process for determining job accommodations, especially when the worker had been absent for a long period of time. For example, one manager said: They are supposed to have a meeting with the employee when they come back, it is a field report. And you are supposed to go over with the employee the field report of what the doctor had advised us of what they can do, and then sometimes, if they don’t agree with it, then we require them to go back and get clarification from their doctor ... the nurses could be involved if it is a return to work plan. So, we’ll sit down and come up with steps and then we will get the employee to take it back to their doctor to see if this would fit within their return to work plan.

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In cases of brief work absence and among smaller employer sites, supervisors are often the sole decision-makers and have to determine whether there is sufficient leeway for limited or alternate duty that meets the restrictions stated in a physician’s sick note. Whether accommodations are dictated by another department, determined collaboratively, or at the sole discretion of the manager, there is general agreement that physician notes are often either too vague or too restrictive in the context of specific jobs. In many cases, physicians seemed to have little understanding of actual job requirements. As one accommodated employee and union representative reported: They, for instance, design gradual return to work plans around the idea that a person has the ability to do sedentary work. Now, to the average physician that means sitting at a desk, answering a telephone. To [this corporation] sedentary work means sitting and sorting ... lifting tubs ... moving them around and sorting it. Well, we have a huge incidence of carpal tunnel syndrome, bursitis, a lot of repetitive strain types of injuries. So when the employer says to the person’s physician we have appropriate sedentary modified duties for this individual, the doctor says, “oh yeah, he can do that, he can do sedentary duties.” But to the doctor that means sitting at a desk answering the phone. To the employer, that means being able to do probably much more physical work, which in turn is either going to prolong the recovery or sometimes, in quite a number of cases, actually causes further injuries or subsequent injuries. From these observations about disability management practices, we propose that supervisors are more willing and able to facilitate job accommodations when the accommodation process is more collaborative and when there is more proactive communication with healthcare providers. w o r k e r fa c t o r s

Worker Attributes While most supervisors understand that job accommodations are helpful to workers with chronic impairments, they also indicate

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that other workers often perceive accommodations as unfair or undeserved. As one occupational health nurse reports: Peer pressure is a huge factor in not being able to return people to appropriate work because, you know, some employees might think that modified duties are sissy work or that ... so and so is just goofing off, he is on modified duties just because he doesn’t want to ... work. I think that that can come from management as well as other employees, that there is a perception that modified duties, that is just a scapegoat not to pull your weight, or do your job. Thus, there is an inherent conflict. Managers find it difficult to maintain workload uniformity and productivity expectations, while simultaneously acknowledging the need for job accommodation for some employees. The interviews also indicate that co-workers’ willingness to help or support a colleague with a chronic impairment can vary depending on the affected worker’s age, tenure, and health status. Chronic impairments and those where diagnosis is based primarily on self-reported symptoms are likely to be viewed with suspicion. One accommodated employee reported: “If you could do a blood test and say okay you have fibromyalgia, then people might believe you.” While one manager said: When the one [employee] returned they [co-workers] were very supportive, well initially they were very supportive. But it kept repeating itself. So no matter what supports they provided for these individuals it didn’t work anyways. So I guess they were always on guard. Whereas with the diabetic or those with the quick fix with the pill and you weren’t seeing the repetition. It’s more related to the repetition of the illness than it is to what the diagnosis is ... I believe that people give everybody an open chance at the first, it’s what happens at the time and if it continues then you start to lose faith. Thus the need for job accommodation might be easily supported for a highly skilled and long-tenured sixty-three-year-old worker returning from heart bypass surgery. However, co-workers are more

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likely to question a supervisor’s efforts to accommodate a new worker who experiences lower back pain after just a few days on the job. Participants cautioned that in job modification decisions, supervisors need to consider the affected co-workers’ opinions and cooperation (keeping in mind that co-worker attitudes are not an appropriate legal justification for refusing to accommodate). Job accommodations that require some flexibility within the immediate working group are more successful if the worker is generally liked and supported by his or her peers. One manager said: “A lot of stress was brought on by herself because of course she would go down there and brag. Saying, ‘oh, I don’t have to work weekends, I’ll just bring in a doctor’s note and get to stay on dayshift.’ ... We try to tell them, you know, ‘don’t do that because it just irritates other people.’” From these observations, we propose that supervisor job accommodation efforts vary by the perceived fairness of the accommodation, the age and tenure of the affected employee, peer relationships, whether the impairment can be objectively verified, and whether the impairment is chronic (requiring repeated accommodations). Cooperation Supervisors note that returning employees sometimes engage in behaviours that make it difficult to accommodate them. These include refusing offered accommodations, exceeding physician recommended restrictions, and refusing treatment, as well as failing to provide necessary medical information, avoiding meetings or failing to call in if they are unable to attend work. It is unclear in what proportion of returning employees these behaviours occur, but when they do they stand out in the minds of supervisors and other participants in the accommodation process. As one accommodated employee admitted: “I don’t tell them nothing anymore ... I used to be honest. They burned me. I’d never be honest ... They don’t care, you are a number, it doesn’t matter what you do, you are a number.” Uncooperative behaviours are often attributed to the adversarial relationships that can develop with workers during a sickness absence, especially in the case of an injury that occurs in the workplace. Workers sometimes perceive they are being forced back to work prematurely. Others are simply exhausted and miserable. As a union representative said: “They are so sick and tired of being sick

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and tired. They are so sick and tired of filling out forms. They are so sick and tired of people not believing that they are ill. That they just give up.” Cooperation is also more difficult to achieve when the employee has a chronic mental health condition. Such conditions affect the employee’s cognitive function and behaviour. Moreover, they also generate discomfort and fear for managers. As one occupational health nurse reports: The difficult ones are easy to think of and they often involve psychological problems ... Those are very, very difficult partly because the person is not ... as easy to deal with. They don’t have the same sort of understanding and capacity, I can’t explain to them where we are going, they may or may not quite grasp it. And the management, they are so much more afraid of psychological illnesses because they don’t understand them. They would rather have somebody with a broken leg in their section than depression. Similarly, job accommodations are difficult to implement when a worker is uninvolved or unaware of physician recommendations sent to the employer, when a worker assumes a very passive role in the return to work process, and when decisions are made without the worker’s input or involvement. According to one manager: “Personal responsibility has a lot to do with it, if I’m the injured worker I should take it upon myself to go to my supervisor and say you know, ‘I think I am ready to take the next step, what do you think?’” According to another: “He wasn’t seen by management as being up front about his condition and he wasn’t known as one of the greater workers. However, I got to give this guy credit. He took his interests to heart. He didn’t let other people manage his case, he managed it himself.” Based on these observations, we propose that supervisors are more accommodating when workers are both more engaged and more agreeable. Job Tenure and Commitment Despite their efforts to treat every worker the same with regard to job accommodation efforts, supervisors acknowledge that they often

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made greater efforts to plan and generate support for job accommodations when a worker has a long history of good performance and commitment to the company. Workers with more job tenure also tend to have a broader range of transferable skills and training, more varied experience in different departments, and more established workplace relationships. These factors not only increase flexibility with respect to accommodation alternatives, but also increase the commitment of supervisors. Supervisors work harder to keep valuable employees in their area, as one manger reports: “If you’ve got a ... trained [employee] and you’ve made an investment in training, they’ve maybe done a number of years in your area and you don’t want to throw that away, but, they can’t do this or this or this ... So where is the trigger point ... maybe we do have to look at moving those people to another [work] unit or whatever.” In contrast, others can perceive instituting job accommodations for a worker who has only been on the job a few weeks, as noted earlier, as unfair. Thus, supervisors are aware of a natural tendency for workers to feel that job accommodations are “more deserved” after a long and dedicated tenure with the company. We therefore propose that supervisors exert greater effort to support and implement job accommodations for the most tenured and high performing workers. s u p e r v i s o r fa c t o r s

Decision-Making Authority Not all supervisors we spoke with have direct responsibility for implementing job accommodations. Their level of responsibility depends on a myriad of factors including department size and hierarchy, the overlapping roles of on-site health and safety personnel, the number of employees they supervise, and organizational rank. The most typical scenario among large employers was for a supervisor to be contacted by someone from within human resources or the health and safety department (i.e., an on-site nurse, disability case manager, or safety director) with a request for job accommodation. Such a request is usually based on a healthcare provider’s written recommendations. Supervisors are typically asked to either: (1) make the necessary arrangements to implement the job accommodations; or (2) explain

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why the request for job accommodation is unreasonable or impossible in the context of usual work operations. A single telephone call or brief meeting between the supervisor and a human resources representative follows. The affected worker is rarely included in this exchange. In small or remote employment sites, the returning worker presents a “physician’s note” requesting job accommodation directly to the supervisor. This creates a need for very rapid evaluation and response on the part of the supervisor. Despite the requirement of a physician’s note, interactions between a supervisor and healthcare provider about possible job accommodations are extremely rare. Some supervisors are frustrated that human resources or the occupational health department can impose workers who require job accommodations on them without their direct input into the process. As one manager said: “There is a negativity around always having to take these injured people and you know what, it takes away the ability to select your staff based on ability and how they fit into the team. It becomes all about placing somebody who is injured and can’t work, but you can’t build your team.” Another said: “If occupational health calls and says, ‘look, we want you to take this person into this vacancy.’ And that one I don’t like ... Yeah, the all stop goes up.” Other supervisors suggest that the lines of authority blur as accommodated employees are moved from department to department. One manager reported: That’s where our biggest downfall seems to be, is that we weave the chess pieces around and we forget where they are, that’s why we have been describing to operators and to the directorships as much as possible is that the employee is under your ownership from day zero, the date of accident, the date of illness, the date of injury, he is yours until they retire, or until they move to another department in a new position. So, if you transfer him to go work somewhere else because you don’t have work for him, you are still responsible for him. Some participants in our research indicated that if the occurrence of impairment is high in a particular workplace or supervisors are unfamiliar with accommodation, it may be preferable to have an independent supervisor (with authority) take on task of managing

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accommodations. One manager said: “The only way that you can really deal with the accommodation issue properly is have a supervisor on the floor that’s dealing with these people on a daily basis. That is their sole job.” One union representative stated: “We had a lot of people off, and they hired a contract person for a year ... and she came in there and we got seven people back to work that had been off for more than a year, a year and a half, two years. Because she had the authority to do that, and she just bullied her way in there ... And then her contract finished up and things started to fall apart again.” Based on these observations, we propose that supervisors are more apt to coordinate and implement job accommodations when they have a more significant role in the decision-making process, when they are knowledgeable about accommodation, and when the lines of authority are clear. Beliefs about Pain and Rehabilitation Just as in the general population, supervisors have different beliefs about rehabilitation and treatment and the ability to work through pain. At one end of the spectrum are a few supervisors who feel that no one should be asked to report to work until the pain is completely resolved and the worker is able to perform 100 per cent of normal duties. When the pain is chronic, this creates an added barrier for supervisors who question the reality of the pain as well as the appropriateness of permanent accommodation. As one manager said: “I think that before we are legislated and obligated to accommodate on a permanent basis, that the medical documentation should be totally objective and scientific.” For some of the supervisors at this end of the spectrum, reluctance comes less from questioning the legitimacy of accommodating chronic pain conditions and more from concern for their staff. They worry that returning to work with pain or limitations puts the worker at risk of re-injury and places an unreasonable burden on co-workers. They usually verbalize these concerns as empathy for affected workers and frustration that multiple healthcare treatments and providers are unable to resolve pain completely for some workers. This story from one manager about an employee on medication illustrates some supervisors’ fears:

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Her [physician] insisted she’s ready to come back to work. And it turned out that when we got her into the office ... poor girl, I mean poor girl! She told us that she had driven to work that day and I don’t know how, she was higher than a Georgia pine, she was out of it ... What is going on? Because to expect a [staff member] to come back to work and be nursed by her co-workers just is not reasonable. That is not reasonable accommodation ... What are we really doing here, putting this girl through it over and over. It’s like building up her hopes, playing into some fantasy, and it’s like setting her up for failure and then she goes and falls back that much further ... And what are we doing to the rest of the staff? ... How reasonable are our expectations? At the other end of the spectrum are supervisors who feel that pain and discomfort are a natural part of aging and a normal experience in physical work. In their view, transient pain and discomfort should not result in work absence or the need for job accommodation. As one manager stated: “I’ve got to give a lot of employees due credit that they do try to tough it out versus complaining and going to see a doctor.” Most supervisors, however, had more moderate views that supported a reduction in physical workload (at least temporarily), while still acknowledging the complications that could arise when trying to shuffle job responsibilities. One consistent belief among supervisors was that job accommodation should be a relatively short-term solution (i.e., less than two weeks), and other solutions (e.g., job reassignment or other medical treatments) should be pursued when pain or physical limitations persist beyond several weeks. Based on these observations, we propose that supervisors with more moderate beliefs about pain and rehabilitation will be the most willing to coordinate job accommodations, while those with more extreme views about recovery (either extremely empathic or extremely harsh) will be less willing. Leadership Style Some supervisors view job accommodation as an administrative process (“I do whatever the physician note tells me”), while others describe a more participatory process (“I ask the worker what they feel able to do”). Clearly, some supervisors feel the need to involve

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workers in the decision-making process, particularly in terms of translating medical restrictions into specific job accommodations. Others are more concerned about the medico-legal aspects of job accommodation, and are careful to adhere to medical restrictions while not offering any job accommodations that might exceed these requirements. Since human rights legislation in Canada requires that employers accommodate disabled employees to the point of undue hardship, adhering to physician-dictated medical requirements protects the company from liability. However, this sometimes means there is little discussion with, or advice to, the worker about specific methods for reducing workload requirements. We interpret these two approaches as a reflection of the difference between transactional and transformational leadership styles. Transactional leaders tend to be more reactive than proactive. They work within existing rules and prefer to maintain the status quo. Transformational leaders work toward change and take an individualized approach with employees, expressing consideration and support. The distinction between the two leadership styles is well reported in research of supervisor practices within organizations (Bono and Judge 2004). The essence of job modification is to take a personalized approach (i.e., matching individual abilities to specific job requirements), and so we propose that supervisors with a more transformational leadership style will feel more comfortable initiating or coordinating this process and will be more likely to involve the employee in developing an accommodation plan. p r o v i d e r fa c t o r s

Clarity of Work Restrictions While it is extremely rare for a supervisor to have direct contact with a healthcare provider, supervisors rely on medical restrictions and other recommendations from healthcare providers in order to provide appropriate job accommodations. An intermediate person who acts as a return to work coordinator (e.g., a human resources representative) often relays medical recommendations to supervisors. Supervisors feel that the quality of physician recommendations is an important factor in their ability to provide job accommodations. There is universal concern that brief notes and checklists from

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­ hysicians do not provide enough information to specify detailed p job accommodations. One manager said: When we get the medical in and it says [this employee] has long term restrictions and can’t walk more than one hour, we don’t just take that at face value like we used to. We will ask, we will send questions back to the treating physician, saying, have you looked at this treatment program, have you looked at this, have you looked at that, what are the options of this, open up opportunities. If we get any response back from the treating physician that supports that he has already done all those things then for the most part we will live with that. As the quote above also illustrates, physician recommendations are viewed with some skepticism because supervisors recognize that the physician’s obligation is to the person with the impairment, not the corporation. As one manager said: “We’re letting doctors run the roost without any accountability.” Another said: “We all know there are some Doc Holidays out there that will give anybody time off for anything they want.” To get around this problem of agency, some employers contract out their occupational health departments. The perception is that an independent provider will have some degree of accountability and neutrality (although they are paid by the employer). A manager said: “The reason we used [contracted occupational health] is so that we don’t have to live with the treating physician’s face value: ‘Joe can’t do this.’” Based on these observations, we propose that supervisors will be more willing to offer appropriate accommodations to employees with chronic impairments when they have clear restrictions, regularly updated information from a physician, and trust the physician. Familiarity and Communication with the Workplace As illustrated in the previous section, supervisors are aware that, in some cases, physicians have an established working relationship with the company and that communication with the healthcare provider could be pursued if they need more information to provide appropriate job accommodations. These communications are nearly always conducted through an intermediary in the human ­resources

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or occupational health and safety department. Even at worksites with on-site clinics, discussions between supervisors and providers about specific job accommodations are extremely rare. The most typical communication between a provider and the employer intermediary occurs for three reasons: (1) to verify that the modified or alternate duty arrangements meet the intended activity restrictions, (2) to ask for clarification about medical restrictions, or (3) to enquire about when a full-duty return to work might be possible. Supervisors generally appreciate a company’s “standard form” for physicians to list task limitations, but these still require some interpretation when it comes to deciding on specific job modifications. In some settings, local physicians have visited the factory floor to become more familiar with physical job demands and are therefore able to tailor their restrictions to the nature of the position the returning employee will occupy. Sending the physician a copy of the job description or a job demands analysis can also facilitate the physician’s knowledge about a job or workplace. Based on these observations, we propose that providers with greater knowledge about the employee’s job and workplace will provide more detailed information about abilities and restrictions. When supervisors have more detailed information, they are able to suggest more reasonable job accommodations. conclusion

Our purpose in this chapter was to describe the results of qualitative research that has taken place over more than a decade. By combining the observations from multiple researchers at multiple sites, we have developed a model of factors that affect supervisor decisionmaking during the accommodation of chronically ill employees. Additional support for the factors included in our model can be found in research investigating supervisory responses to vocational rehabilitation (Blackman and Chiveralls 2011), and return to work after sick leave (Munir, Yarker, et al. 2012, Pransky, Shaw, et al. 2004; Williams-Whitt 2007). Although these studies are not concerned specifically with accommodating chronically work disabled employees, the contexts are similar (working with rehabilitating employees), and the behaviours and perspectives of interest are those of the supervisors.

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For example, Blackman and Chiveralls (2011) find that the supervisor’s liaison role (i.e., liaising with stakeholders directly involved with disability management) has the strongest direct influence on supervisor readiness to become engaged in vocational rehabilitation. Supervisor readiness influences the actual supervisory process during rehabilitation. Behaviours associated with readiness to become engaged included finding safe alternative duties for the rehabilitating employee, ensuring the employee only carries out the specified work tasks, ensuring the injury or disorder is not re-aggravated while at work, and getting other employees to relinquish their typical job roles in favour of the rehabilitating employee’s needs ­(Blackman and Chiveralls 2011). Understanding the factors that shape a supervisor’s efforts to support and facilitate job accommodations has important implications in terms of improving work disability outcomes for the affected employees, their supervisors, and their organizations. Our model provides a foundation for future research that can be used to shape supervisor training and improve existing workplace intervention strategies. With more effective supervision and accommodation, we can minimize the negative impact of chronic impairment.

references

Amir, Ziv, Phil Wynn, Fong Chan, David Strauser, Stuart Whitaker, and Karen Luker. 2010. “Return to Work after Cancer in the UK: Attitudes and Experiences of Line Managers.” Journal of Occupational Rehabilitation 20(4): 435–42. Blackman, Ian, and Keri Chiveralls. 2011. “Factors Influencing Workplace Supervisor Readiness to Engage in Workplace-Based Vocational Rehabilitation.” Journal of Occupational Rehabilitation 21(4): 537–46. Bono, Joyce E., and Timothy A. Judge. 2004. “Personality and Transformational and Transactional Leadership: A Meta-Analysis.” Journal of Applied Psychology 89(5): 901–10. Feuerstein, Michael, Steven M. Berkowitz, Amy J. Haufler, Mary S. Lopez, and Grant D. Huang. 2001. “Working with Low Back Pain: Workplace and Individual Psychosocial Determinants of Limited Duty and Lost Time.” American Journal of Industrial Medicine 40: 627–38. Franche, Renée-Louise, Kimberly Cullen, Judy Clarke, Emma Irvin, ­Sandra Sinclair, John Frank, and the Institute for Work & Health (IWH)

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Workplace-­Based RTW Intervention Literature Review Research Team. 2005. “Workplace-Based Return-to-Work Interventions: A Systematic Review of the Quantitative Literature.” Journal of Occupational Rehabilitation 15(4): 607–31. Gates, Lauren B. 1993. “The Role of the Supervisor in Successful Adjustment to Work with a Disabling Condition: Issues for Disability Policy and Practice.” Journal of Occupational Rehabilitation 3(4): 179–90. Håland Haldorsen, Ellen M., Irene B. Jensen, Steven J. Linton, Åke Nygren, and Holger Ursin. 1997. “Training Work Supervisors for Reintegration of Employees Treated for Musculoskeletal Pain.” Journal of Occupational Rehabilitation 7(1): 33–43. Henderson, Max, Nicholas Glozier, and Kevin Holland Elliot. 2005. “Long Term Sickness Absence.” bmj 330: 802–3. Kenny, Dianna T. 1999. “Employers’ Perspectives on the Provision of Suitable Duties in Occupational Rehabilitation.” Journal of Occupational Rehabilitation 9(4): 267–76. Krause, Niklas, Lisa K. Dasinger, Leo J. Deegan, Linda Rudolph, and Richard J. Brand. 2001. “Psychosocial Job Factors and Return-to-Work after Compensated Low Back Injury: A Disability Phase-Specific Analysis.” American Journal of Industrial Medicine 40(4): 374–92. Kushnir, Talma, and Orit Luria. 2002. “Supervisors’ Attitudes towards Return to Work after Myocardial Infarction or Coronary Artery Bypass Graft.” Journal of Occupational & Environmental Medicine 44(4): 331–7. Lemieux, Pierre, Marie-José Durand, and Quan Nha Hong. 2011. “Supervisors’ Perception of the Factors Influencing the Return to Work of Workers with Common Mental Disorders.” Journal of Occupational Rehabilitation 21(3): 293–303. Linton, Steven J. 1991a. “A Behavioral Workshop for Training Immediate Supervisors: The Key to Neck and Back Injuries?” Perceptual and Motor Skills 73(3): 1,159–70. – 1991b. “The Manager’s Role in Employees’ Successful Return to Work Following Back Injury.” Work & Stress 5(3): 189–95. Loisel, Patrick, Rachelle Buchbinder, Rowland Hazard, Robert Keller, Inger Scheel, Maurits van Tulder, and Barbara Webster. 2005. “Prevention of Work Disability Due to Musculoskeletal Disorders: The Challenge of Implementing Evidence.” Journal of Occupational Rehabilitation 15(4): 507–24. Robert K. McLellan, Pransky, Glenn, and William S. Shaw. 2001. “Disability Management Training for Supervisors: A Pilot Intervention Program. Journal of Occupational Rehabilitation 11(1): 33–41.

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Munir, Fehmidah, Joanna Yarker, Ben Hicks, and Emma DonaldsonFeilder. 2012. “Returning Employees Back to Work: Developing a Measure for Supervisors to Support Return to Work (SSRW).” Journal of Occupational Rehabilitation 22(2): 196–208. Nieuwenhuijsen, Karen, Jos H.A.M. Verbeek, Angela G.E.M. de Boer, Roland W.B. Blonk, and Frank J.H. van Dijk. 2004. “Supervisory Behaviour as a Predictor of Return to Work in Employees Absent for Work Due to Mental Health Problems.” Occupational and Environmental Medicine 61(10): 817–23. Pransky, Glenn, William Shaw, and Robert McLellan. 2001. “Employer Attitudes, Training, and Return-to-Work Outcomes: A Pilot Study.” Assistive Technology 13(2): 131–8. Pransky, Glenn, William Shaw, Renée-Louise Franche, and Andrew Clarke. 2004. “Disability Prevention and Communication among Workers, Physicians, Employers, and Insurers – Current Models and Opportunities for Improvement.” Disability and Rehabilitation 26(11): 625–34. Pryce, Joanna, Fehmidah Munir, and Cheryl Haslam. 2007. “Cancer Survivorship and Work: Symptoms, Supervisor Response, Co-workers’ Disclosure and Work Adjustments.” Journal of Occupational Rehabilitation 17(1): 83–92. Rael, Elizabeth G.S., Stephen A. Stansfeld, Martin Shipley, Jenny Head, Amanda Feeney, and Michael Marmot. 1995. “Sickness Absence in the Whitehall II Study, London: The Role of Social Support and Material Problems.” Journal of Epidemiology and Community Health 49: ­474–81. Shaw, William S., Michelle M. Robertson, Glenn Pransky, and Robert K. McLellan. 2003. “Employee Perspectives on the Role of Supervisors to Prevent Workplace Disability after Injuries.” Journal of Occupational Rehabilitation 13(3): 129–42. – 2006. “Training to Optimize the Response of Supervisors to Work Injuries – Needs Assessment, Design, and Evaluation.” aaohn Journal 54(5): 226–35. Shaw, William S., Michelle M. Robertson, Robert K. McLellan, Santosh Verma, and Glenn Pransky. 2006. “A Controlled Case Study of Supervisor Training to Optimize Response to Injury in the Food Processing Industry.” Work 26: 107–14. Solovieva, Tatiana I., Richard T. Walls, Deborah J. Hendricks, and Denetta L. Dowler. 2009. “Cost of Workplace Accommodations for Individuals with Disabilities: With or without Personal Assistance Services.” Disability and Health Journal 2(4): 196–205.

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Strauss, Anselm L., and Juliet M. Corbin. 1990. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, CA: Sage Publications. Tubach, Florence, Annette Leclerc, Marie-France Landre, and Françoise Pietri-Taleb. 2002. “Risk Factors for Sick Leave Due to Low Back Pain: A Prospective Study.” Journal of Occupational and Environmental Medicine 44(5): 451–8. Williams-Whitt, Kelly. 2007. “Impediments to Disability Accommodation.” Relations Industrielles/Industrial Relations 62(3): 405–32. World Health Organization. 2012. “Disability and Health: Fact Sheet No. 352.” http://www.who.int/mediacentre/factsheets/fs352/en/index.html. Wrapson, Wendy, and Avril J. Mewse. 2011. “Supervisors’ Responses to Sickness Certification for an Episode of Low Back Pain: Employees’ Personal Experiences.” Disability and Rehabilitation 33(19–20): ­1,728–36.

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6 Accommodation in the Context of Complex Chronic Illness melissa popiel, wendy porch, and le-ann dolan

Complex chronic illnesses are long-term conditions that may or may not progressively worsen over time and require ongoing treatment and management. They are often marked by fluctuating, unpredictable periods of wellness and impairment that can be known as episodic impairments. In Canada, a country with approximately 34,880,500 people (Statistics Canada 2012), the numbers of people who live with complex chronic illnesses are staggering: over 4 million Canadians live with arthritis (Lagacé, Perrucio, et al. 2010); • 20 per cent of Canadians will experience an episode of mental illness in their lifetime (Public Health Agency of Canada 2009a); • between 55,000 and 75,000 Canadians live with multiple sclerosis (Multiple Sclerosis Society Canada 2009); and • 63,000 Canadians are living with the human immunodeficiency virus (HIV) (Public Health Agency of Canada 2009b). •

Canadians who live with episodic impairments must devote significant thought to decisions related to engaging in employment, as there can be health benefits and repercussions. Often, for people who live with episodic impairments, conditions evolve and change over time, and so workplace accommodations need to be reviewed and re-evaluated over time. In this chapter, we intend to provide insight into the many factors that come into play for people who live with episodic impairments and their employers. We present a case

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study that highlights the personal, clinical, vocational, and financial considerations commonly involved in relation to engaging in employment. The Canadian Working Group on HIV and Rehabilitation (CWGHR) developed the case study, which illustrates the issues someone living with an episodic impairment in a structured workplace environment commonly faces. For the case study, we created the character ­Saanthi as a composite of both observed and documented personal narratives of people with episodic impairments from across Canada, collected as part of our work with the CWGHR. The CWGHR is a leading national, multi-sector organization that works to address the disability and employment needs of people who live with HIV and other complex chronic illnesses through research, education, policy, and practice initiatives. Through this work, we observed that there are often challenges with episodic impairments experienced when living and working with complex chronic illnesses. When complex chronic illnesses have episodic periods of illness and wellness, they may also be referred to as episodic disabilities. In addressing employment issues, self-determination, or having the option to work to the degree that one is able, is important. Our case study reinforces the significance of this key principle. Through an examination of Saanthi’s experiences at work, we show how accommodation needs for people who live with complex chronic illnesses can change as a consequence of their fluctuating health conditions. We use Saanthi’s case as a point of reference for examining concerns held by many who have complex chronic illnesses but want to engage in paid labour. We also consider the employer perspective in relation to Saanthi’s case – that is, the practices, policies, and philosophies that inform the activities and responsibilities of a typical organization and its management staff, including all facets of human resources (HR) management (Jackson and Schuler 1995). We present our discussion of Saanthi’s case of an employment situation requiring accommodation in two parts. First, we consider the hiring process, and second, we consider what happens when an employee needs accommodations some time after being hired. Accommodation within the workplace ideally strikes a balance between the needs of the employee and the employer, and therefore must necessarily consider both perspectives on the issues at hand. We conclude with an overview of suggested areas for future research

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into the unique challenges faced by people who live with complex chronic illnesses and those who employ them. the hiring process

We begin this section by introducing the fictional character of Saanthi, a composite based on our work with and knowledge of employment in the context of episodic impairments. We then review employee perspectives on post-hire accommodations in general, followed by typical employer perspectives about the hiring process, and end with recommendations for change. Saanthi’s Case After she graduated from community college in accounting, Saanthi joined the finance office in a successful specialty printing company. She was with the company for twenty-five years and was in charge of payroll and accounts payable for four years when she decided to move from rural Ontario to Victoria, British Columbia, to be closer to her family. She began looking for a new position in payroll after she arrived in Victoria. A year before she left her job at the printing company and moved to Victoria, Saanthi began to experience dryness around her eyes and mouth and became very sensitive to bright lights. These conditions progressed to the point where, as she described to her doctor, she felt as if she was “trapped in a desert, with no oasis in sight” (Lupus Canada 2012). Six months before her move, she also started to experience swelling, stiffness, and mild joint pain. Saanthi visited a specialist and received a diagnosis of lupus. Although the symptoms were uncomfortable, they did not affect her ability to perform her job duties. The diagnosis had a severe emotional impact on Saanthi. Previously she had rarely been sick, and had caught only the occasional cold or flu. While her new illness was not overly painful, she was concerned that her symptoms might impact her future work performance and jeopardize her access to extended health benefits at a new job. After she arrived in Victoria, Saanthi became interested in a position in her field and was called for an interview. She wanted the hiring process to go well and was uncertain what to say about her illness. Saanthi knew that she needed to talk with her next employer

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about the number of medical appointments she had scheduled in the coming months but was uncertain about when to do this. She also wondered whether she could access the company drug and health benefits plan because of her illness. The Hiring Process from an Employee’s Perspective Interviews are stressful for everyone, but for people who live with episodic impairments, job interviews can represent a difficult balancing act. Like anyone else, prospective employees might be nervous about the interview and excited about the prospect of a new job, but they might also be anxious about how to manage questions and concerns about their illness within the interview process. This anxiety is common for many individuals with complex chronic illnesses, as their health is a private and sensitive part of their lives. In Saanthi’s case, her excitement regarding the interview was somewhat tempered by her concerns related to whether or not she should discuss her illness during the interview and tell her prospective employer about her need to attend upcoming medical appointments. During interviews, potential employers ask candidates about their previous work experiences, including gaps in their work history. A person living with a chronic, unpredictable illness, such as Saanthi, may have a number of resume gaps attributable to their episodes of illness. If the candidate decides not to disclose information about their illness during the job interview, like many other people who live with illnesses or invisible impairments, they face the dilemma of accounting for unexplained employment gaps. This can cause additional stress for candidates, and has the potential to negatively impact their interview performance and the employer’s assessment. Evidence suggests that people who live with episodic impairments generally choose not to voluntarily disclose their condition during the interview process (von Schrader 2011). Many believe that disclosing an illness, or the need for an accommodation for the interview itself, might jeopardize their chances of being hired. Yet, by not requesting needed accommodations for the interview process, an individual’s ability to stay focused on the questions at hand may be negatively affected. During Saanthi’s interview, for example, she spent considerable energy monitoring her answers to questions to ensure that she did not inadvertently reveal her illness to her prospective employer.

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Finally, the prospect of re-entering the workforce can be daunting for people with complex chronic illnesses, especially for those who have been absent for some time. Even when, as noted in chapter 2, work brings with it benefits such as the satisfaction of a job well done, social interactions, and a steady income, the prospect of working and the recognition that work may cause stress can, at times, cause uncertainty and make symptoms worse. For example, as O’Brien, Bayoumi, et al. (2008) note, uncertainty in people with HIV can contribute to increased distress, fear, anxiety, and depression. People who live with complex chronic illnesses who contemplate entry into the workforce or a return to work may find that there are few resources designed to expressly support them in devising strategies for successfully navigating the employment process. The CWGHR has developed one such resource: The Episodic Disability Employment Network (EDEN), which has a website (www.edencanada. ca) designed to provide people with complex chronic illnesses and episodic impairments the opportunity to connect with others in similar situations. On the website, participants are encouraged to share strategies for navigating the challenges associated with returning to or maintaining employment. Participants can also connect to human resource professionals to ask questions about working and experiencing episodic impairments. Many resources on the EDEN website relate to hiring and recruitment issues, which demonstrates the degree to which the hiring process can be fraught with ambiguities for people who live with complex chronic illnesses. The Hiring Process from an Employer’s Perspective As Saanthi’s case shows, the hiring process can be challenging. Uncertainties abound for both the employee and employer. The intersections of legislation, organizational policies and protocol, organizational culture, and personal challenges are often complex. Some may question whether it is possible to be equitable in an unpredictable illness context. Equality of opportunity is a central tenet of employment legislation in Canada. But translating legal requirements into policies and practices for actual business environments is often complicated. Many employers find themselves in a challenging position, rooted in some level of awareness of the legally mandated duty to accommodate the needs of employees with impairments while being pulled

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by business interests and external stakeholder demands (see Lysaght and Krupa in chapter 4 of this volume). Finding a balance between these two seemingly competing interests is an ongoing challenge. Many employers wrestle with knowing how to implement leading practices for employee accommodations within the constraints of their organization. Employers have a sense that supporting employees with complex chronic illnesses often involves investing time and energy, beginning with the hiring process, but too often walk an unsure path. Hiring practices affect not only those directly involved in the recruitment and hiring processes, but also aspects of the working relationship that develop after hiring is completed. The unpredictable nature and negative stigma associated with some forms of complex chronic illnesses means that employers may be hesitant to hire employees living with them. In making a hiring decision, employer concerns about candidates with chronic illnesses may include consistency of attendance, health fluctuations, and uncertainty about the impact on workplace culture. Employers may also have industry-specific concerns about hiring employees with complex chronic illness, such as consistent attendance in the manufacturing sector or in circumstances where tips are divided among employees. As well, the organizational environment establishes an important context for employee success (Beatty and Joffe 2006). The norms and values that comprise organizational culture will either aid or complicate the integration of workers with complex chronic illnesses into a work environment (Spataro 2005). Recommendations for Employers for an Equitable Hiring Process Below are recommendations for more equitable hiring practices for all employees, grounded in CWGHR’s work in the areas of research, education, employment policy and practice, and complex chronic illnesses (CWGHR 2010) from across Canada. In working toward equality in the hiring process, employers should consider levelling the field of opportunity. Levelling the hiring field requires examining candidates from a strengths-based perspective, which is based on recognizing and valuing the positive qualities and potentials of people with impairments (Kendrick 2010). From this perspective, it becomes easier to see what someone has to offer and what their capacity is. A strengths-based perspective also works from a social

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justice model. To promote a strengths-based perspective, employers should become familiar with current employment legislation. Legislation that requires employers to offer accommodations during the interview process differs from province to province. To provide accommodations for an interview, employers need to know that there is a need for an accommodation but do not need to know the type of illness. During the interview, employers are not allowed to ask if a candidate would require accommodations to do the job in question, or whether they have any illnesses or impairments. In Ontario, the Employment Accessibility Standard (part of the Integrated Accessibility Standards), under the Accessibility for Ontarians with Disabilities Act, requires larger employers to adopt policies and practices that ensure that accommodations are available to candidates throughout the recruitment and hiring process (Broad and Pon 2009). Prior to initiating the hiring process, employers can set aside time to plan and prepare for a fair and reasonable process, including examining current organizational practices. Disability groups can provide information about inclusive language for recruitment ads and interview questions. Employers should also periodically review organizational practices and policies. The hiring process is an important time for determining the “fit” between an employee and a workplace. Employers should include clear core job duties in postings to allow potential candidates to understand the most essential job functions. Employers are encouraged to develop policies regarding the provision of accommodations and to distribute them to candidates in advance of the interview. After making a hiring decision, employers should review organizational policies and procedures on job accommodation with the new employee and inquire whether they need any job-related accommodations. Taking the time to affirm that there will not be negative repercussions for making an accommodation request will help employees feel a greater sense of ease in requesting accommodations as the need arises. This will help foster an inclusive workplace culture and improve the integration of all employees. After the hiring process ends, integrating the new employee into the workplace is at least in part an act of good faith in the employment relationship. Employers need to have confidence in the employment relationship so that they can develop trust with the employee. Trust is what ultimately will allow both the employer and the employee

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to work together through future challenges, and will help employees such as Saanthi better integrate into the workplace. t h e p o s t - h i r e n e e d f o r a c c o m m o d at i o n s

Saanthi’s Case Saanthi chose not to disclose her illness when she was hired in her new job as payroll clerk. Several months after beginning her new position in Victoria, she began to experience additional pain in her hands. She initially felt no need to inform her supervisor and tried to work through the pain. She spent more time than usual completing her work and made mistakes more frequently. With errors being made in payroll and bill payments, it soon came to the attention of her supervisor that something was wrong. Although they had an excellent relationship, Saanthi’s meeting with her supervisor about these errors did not go well. Saanthi was unwilling to discuss her impairments and said that her work would improve in the future. Saanthi soon became withdrawn, lost her appetite, and found it difficult to sleep. Her work performance further declined. She took several weeks off work and was subsequently afraid to return. At that point, her concerned husband spoke to the HR director on her behalf, and the director convinced Saanthi to meet with the company. The HR director said that the company wanted to work with her to determine appropriate actions but could not do so without Saanthi’s involvement. After a meeting at her home between Saanthi, her supervisor, the HR director, and an employee assistance program representative, Saanthi realized that her position with the company was secure, that the company recognized her talents and accepted that her condition was chronic and that she would experience unpredictable episodes of illness. Feeling reassured, she agreed to return to work with accommodations that took her impairments into account. Although Saanthi did not appear ill, she still felt pain in her joints and experienced light sensitivity in certain environments, including in her office at work. She managed her physical health symptoms through regular physiotherapy, meditation, daily exercise, and the support of a nutritionist. Saanthi had support from her husband, who assisted with managing her appointments, in her return to

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work. Her health benefits covered some of her treatments, but she also paid for some herself. In the office, Saanthi benefited from technology-related accommodations including mouse and keyboard adaptations to ease her hand pain, and physical office environment accommodations including desk height adjustments, also to ease hand pain. Changes to the office lighting improved her vision at work. She also benefited from flexible break scheduling that allowed her to rest when necessary. Saanthi continued to be concerned about what to say to her coworkers about her chronic illness and, with the help of a HR specialist, she developed a short description of her situation she could use to respond to questions from co-workers. Still, with her impairments worsening, she became increasingly uncertain about how she would continue to cope with the changes. The Employee’s Perspective Ironically for people who live with complex chronic illnesses, questions and uncertainties about employment may increase after finding a job. Despite successfully securing employment, how they and their workplace respond to these uncertainties can have a large impact on whether employees will ask for accommodations that would help them remain engaged in the workforce. For example, in Saanthi’s case, increasing numbers of work errors led to increased stress for her, which in turn elicited an initially negative response from her supervisor. These factors meant Saanthi experienced and had to cope with emotional challenges in addition to her pre-existing lupus. Starting a new job can be stressful and stress can act as a trigger for illness episodes. For those with complex chronic illnesses, fitting into a new workplace and learning new procedures and new ways to do things while trying to maintain health can be very challenging. Stress can negatively affect the illness course by making a flare up of the original condition more likely to occur. People with episodic impairments who have just re-joined the workforce may worry that they will experience an episode of illness during the probationary period and thereby risk not receiving a permanent position. They may also worry about eligibility for company benefit and health insurance plans. Access to health insurance, as well as short- or long-term disability insurance, can be critical to sustaining employment for people living with chronic illnesses.

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However, some of these programs have specific eligibility requirements that might make qualifying difficult. For example, some benefits programs require uninterrupted work attendance for a set period of time before they allow enrolment. Such a requirement clearly can make it difficult to qualify if living with an episodic impairment. Whether to request accommodations, and how soon, are critical questions that face people with chronic illnesses (Fowler 2011). Accommodation is a type of contract between the employer and employee that is chiefly invoked when an employee formally requests it. Although not requesting accommodations may save a person with a chronic illness from being publicly identified as such, it might also mean that the employer has a reduced legal obligation to meet the individual’s impairment-related needs as the employer is not “officially” aware that there are any special needs to consider. As well, some research suggests that people with arthritis may choose to ignore their symptoms or accommodation needs in order to avoid disclosing their condition at work (Gignac 2012). Employees need to understand that when they request an accommodation they do not need to disclose their illness, but only that they have a health condition that affects their ability to perform job duties and, as a result, means they require accommodations to meet the functional requirements of the job. Individuals who do not make such requests risk working without the supports they need to maintain their health. Sometimes, individuals choose not to disclose their need for accommodations in the hope that their condition will improve or go away on its own. Unfortunately, this type of coping strategy often leads to a worsening of symptoms and potentially the need to take time off for recovery. As Saanthi’s case shows, simply ignoring health worries and difficulties coping at work led to additional stress, made her original symptoms worse, and created emotional health challenges. Maintaining the privacy of health information, particularly if living with a highly stigmatized condition such as HIV or a mental illness, can be an ongoing worry for individuals (de Bruyn 1998; Wahl 1999). Although generally employees are not required to disclose a medical condition or diagnosis in order to be eligible for accommodations, in some circumstances, employers can request detailed information about an individual’s health condition in order to either assess workplace safety issues or readiness to return to work. For example, an employer might request a doctor’s note

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attesting that an employee who has experienced angry or aggressive outbursts at work as a result of a mental illness is fit to return to the workplace. The blurred boundaries regarding who can have access to personal health information can be an additional source of stress for individuals with complex chronic illness, particularly when the illness is one that is highly stigmatized. Saanthi developed a short script of what to say regarding her illness to her co-workers, but was uncertain about how she might handle their questions in the future should her conditions continue to worsen. The Employer’s Perspective In the case study, Saanthi grapples with balancing health issues and trying to maintain equilibrium at work. Ideally, an attentive supervisor could notice the employee’s difficulties and take the lead in initiating conversations about accommodation options in the workplace. Employers can provide accommodation support with or without knowing an employee’s diagnosis – the prognosis, if there is one, is much more important. A supervisor who recognizes that an employee requires an accommodation can benefit the future wellness of the employee and their productivity within the company. This can aid in HR planning, which can take variability and unpredictability into account, facilitate job function redesign, and proactively support the employee before an episode of illness occurs. Employers can also be proactive in developing inclusive and flexible policies that treat all employees with the same standard and that will have a positive impact on the overall organizational culture (Beatty and Joffe 2006). Developing and communicating clear policies on accommodation requests and the privacy of employee health information is the best way to encourage employees to feel comfortable making such requests (Ontario Human Rights Commission 2000, 34–5). When employees such as Saanthi are confident that their workplace supports and respects people who might work differently than others, they are more likely to request the supports they need in order to continue working successfully. Had Saanthi, for example, been more aware of the opportunity to request accommodations related to her illness, she may have been able to address her performance issues at work before she became overwhelmed. Employers and ­employees

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should both view accommodations as worthwhile investments toward maintaining a healthy and engaged workforce. When addressing the accommodation needs of employees with episodic impairments, it is important to understand the clinical, psychosocial, economic, and infrastructural circumstances that may affect employees and their ability to perform their job duties. Employers should consider employment history, workplace accommodation, human resource policies (including sick leave), and other workplace environmental factors, along with legal and human rights legislation such as the “duty to accommodate” provisions in human rights and disability laws (Escovitz and Donegan 2005; Hyduk and Kustowski 2003). Once an employee has established that they have a mental or physical impairment that requires employment accommodation, the burden shifts to the employer to prove they have made every reasonable effort to accommodate the employee’s impairment (Lynk 2002). Recommendations for Employers on Developing Workplace Accommodations When a need for accommodation arises, employers can use the following process to initiate the accommodation process. First, they should meet with the employee and review the job duties with employee. They should then determine whether the limitations caused by the complex chronic illness impact core responsibilities of the job. These core duties are tasks that must be done in a specific way and cannot be altered without changing the nature of the job. If these core job duties are affected, the employer should determine whether the employee can continue performing the job, listen to accommodation options presented by the employee, discuss additional accommodation options as needed, and then determine a best course of action to accommodate the impairment. In addition, the employer should protect personal confidentiality and privacy both during the accommodation process and afterward. Keeping accurate records can be helpful during times of management or HR turnover, when confidentiality is equally important. Employers should be willing to work with the employee on alternate accommodations if the initial attempt is not a best fit. Every employee context is unique. Employers need to create individually tailored plans when they design accommodations. To determine what the plan should look like, employers need not act alone or

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without sufficient information. One of the most important resources is the employee with the complex chronic illness, whose involvement during the process and agreement with the final terms of the accommodation plan are critical to its ultimate success. Workplace resources such as HR staff, direct supervisors, occupational health and safety committee members or staff, and union representatives can provide useful perspectives for the organization. In addition, family/employee assistance programs can give employees private personal assistance. Medical resources can include the treatment team of physicians, physiotherapists, and other healthcare professionals. Other supports that may be helpful include vocational or employment counsellors and occupational therapists. Case managers or benefits counsellors can give advice from the perspective of the relevant public or private benefits payer. As well, organizations that represent various complex chronic illness groups (such as arthritis, HIV, or MS associations) may provide additional resources such as job retraining or skills development. These organizations may also be willing to speak to employers and staff, which may be part of a broader, complex chronic illness awareness raising campaign. Also, in some areas, legal supports for employment issues may be available through community legal clinics. Any combination of these resources can be involved in assessing and arranging a workplace accommodation. To effectively develop an accommodation plan, employers often need medical information outlining which parts of the job an employee can or cannot do and for what length of time. When requesting medical information, employers can confirm the need for accommodation in a reasonable way by, for example, allowing for a note outlining the employee’s limitations from either a general practitioner or a specialist. Employers should be prepared to engage in extended discussions to gain the input of those involved before determining an appropriate course of action. Due to the nature of episodic impairments, employers may need to make several attempts to determine the appropriate accommodation. If the employer expresses willingness to work through this process, the employee will trust in the employment relationship. Employers can express confidence that accommodations will successfully be developed and that the employee’s job is secure. When making decisions about which types of accommodations to offer, there are a wide variety of options. Some forms of

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a­ccommodation may lend themselves better to certain types of industrial sectors. Common examples of accommodation for people with complex chronic illnesses include: flexible work hours; a private place to store and take medications; • frequent breaks; • a private space to rest; • adaptive technologies, e.g., specialized software or video­ conferencing; • peer support; • part-time work with full benefits; • part-time work with pro-rated benefits; and • consulting an occupational therapist. • •

In some instances, there may be multiple types of accommodation that appropriately serve the employee without broaching the limit of undue hardship for the employer. For example, an employee may need one day off a week to attend medical appointments and request that Fridays be designated for this purpose. If the choice of day does not meet the needs of the employer and the appointments can be scheduled for another day of the week, the employee may be asked to take off a different day of the week. After the plan is completed and implemented, the employer should provide avenues for ongoing communication with the employee, which can include identifying and implementing job accommodations on a regular basis (Roessler and Rumrill 1998). This might involve regular check-ins with a trusted supervisor or an HR representative to determine if accommodations need to change over time. To help foster a culture of equity, employers should examine accommodation options in an attempt to limit workload increases for other employees. If employers ask other employees to take on too much extra work, colleagues may resent the employee with the episodic illness and working relationships may erode. Accommodations will affect the workplace culture and environment. No employee is an island. Employers should ensure that all employees know that there are safe avenues within the company to request and (re)negotiate accommodations. They should regularly inform employees about this process, and also make employees aware of other supports such as family and employee assistance

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programs, community-based programs, and extended health benefit options. Early intervention may help reduce the likelihood of a longer-term workplace absence. Establishing universal practices will lessen the likelihood of perceived preferential treatment. The employer needs to take the lead in developing and promoting strong disability policies and programs that foster a healthy and balanced workplace culture. Making changes to become a more inclusive work environment is a long-term process, as shown in the case study of Saanthi, which reflects the need for different supports at two points in time. Change often occurs incrementally and good solutions are possible in any work environment. conclusion

Unpacking and understanding the work-related needs of people who live with complex chronic illnesses is a relatively new field of study. There is a marked lack of data that relate specifically to workplace outcomes for people with complex chronic illnesses. This population represents an “in-between case” in terms of our thinking on matters of employment, as they are sometimes able and sometimes unable to work. As a result, there is much research that still needs to be undertaken when attempting to clarify their work experiences and the experiences of those who employ them. Areas for future research related to understanding complex chronic illness within the context of employment include evaluation of the support strategies for someone living with a complex chronic illness in successfully returning to work. Projects that evaluate specific accommodations and return-to-work strategies will hone our understanding of what supports employers need to offer to facilitate a successful return to work. As well, an analysis of the impact that accommodations have on the productivity of employees with complex chronic illnesses will be very useful. People living with complex chronic illnesses most frequently request flexible work hours, a point also highlighted in chapters 1 and 9, and yet we know very little about how flexible work hours impact an employee’s overall productivity. Examining the impacts of accommodations on work environments in more detail will offer better insight into the value of this and other accommodations within a work context. For many individuals, work takes place in a complex system of people and operations. Research that examines the factors ­influencing

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the development of a supportive workplace culture is needed from a complex chronic illness perspective. These factors have been researched in other contexts, and such work may provide a valuable starting point for work in a complex chronic illness context. Furthermore, Canada is facing a shortage of skilled labour. Business leaders and the Canadian Chamber of Commerce have noted that a lack of skilled workers threatens Canada’s “ability to keep up in a global, knowledge-based economy” (CBC News 2012; Blackwell 2012). A better understanding of the unique needs of people with complex chronic illnesses at work, and willingness to accommodate their needs, will not only contribute toward a more diverse inclusive workforce, but will also make possible access to a largely untapped pool of skilled labour. Ensuring that people with complex chronic illnesses are able to work, through the application of sound policy development and accommodation practices, makes good sense. Complex chronic illnesses are on the rise in Canada. People with complex chronic illnesses often want to work and be a part of the broader community. Ensuring that people living with complex chronic illnesses are included in our workforce requires consideration of the unique perspectives represented by both Canadian employers and people with complex chronic illnesses. In this chapter we highlighted some of the challenges and opportunities associated with employment for people with complex chronic illnesses. By presenting both the perspective of people living with complex chronic illnesses and that of employers, we add to an understanding of what both parties can do to ensure that productive and meaningful employment is the outcome for all involved.

references

Beatty, Joy E., and Rosalind Joffe. 2006. “An Overlooked Dimension of Diversity: The Career Effects of Chronic Illness.” Organizational Dynamics 35(2): 182–95. Blackwell, Richard. 2012. “Business Leaders Cite Skilled Labour Shortage as Priority.” Globe and Mail, 4 March. http://www.theglobeandmail. com/report-on-business/careers/management/c-suite-surveys/businessleaders-cite-skilled-labour-shortage-as-priority/article2358388. Broad, Paul, and Leola Pon. 2009. “Transforming Human Resources Practices under the Proposed AODA ‘Employment Accessibility ­Standard.’”

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Hicks Morley, 19 March. http://www.hicksmorley.com/images/pdf/ 2009/aoda_employment_standard_03192009.pdf. Canadian Working Group on HIV and Rehabilitation (CWGHR). 2011. E-Module for Evidence Informed hiv Rehabilitation (E-Module). Toronto, ON: CWGHR. http://www.hivandrehab.ca/en/information/care_ providers/documents/cwghr_e-moduleevidence-informedhivre habilitationfinal.pdf. Canadian Working Group on HIV and Rehabilitation (CWGHR). 2010. hiv , Disability and Rehabilitation: Promoting Quality of Life through Research, Education and Cross-Sector Partnerships – Strategic Plan: 2010–2013. Toronto, ON: CWGHR. http://www.hivandrehab.ca/en/ about_us/documents/cwghrstrategicplanfinal.pdf. CBC News. 2012. “Labour Shortage ‘Desperate,’ Chamber Says.” cbc News, 8 February. http://www.cbc.ca/news/business/story/2012/02/08/ canada-labour-shortage.html. de Bruyn, Theodore. 1998. hiv/aids and Discrimination: A Discussion Paper. Montreal, QC: Canadian HIV/AIDS Legal Network and Canadian AIDS Society. http://www.aidslaw.ca/publications/interfaces/downloadfile.php?ref=46. Escovitz, Karen, and Kathleen Donegan. 2005. “Providing Effective Employment Supports for Persons Living with HIV: The KEEP Project.” Journal of Vocational Rehabilitation 22: 105–14. Fowler, Heather Smith. 2011. Employees’ Perspectives on Intermittent Work Capacity: What Can Qualitative Research Tell Us in Ontario? Ottawa, ON: Social Research and Demonstration Corporation. http:// www.srdc.org/uploads/intermittentwork_report_en.pdf. Gignac, Monique. 2012. “Supporting Employees Dealing with Chronic Diseases.” Paper presented at the Institute for Work and Health Plenary, Toronto, ON, 20 March. Hyduk, Christine, and Kathy Kustowski. 2003. “Helping People Coping with HIV and AIDS Manage Employment.” In Sourcebook of Rehabilitation and Mental Health Practice, edited by David P. Moxley and John R. Finch, 417–31. New York, NY: Kluwer Academic/Plenum Publishers. Kendrick, Michael J. 2010. “Historical Contributors towards Increasing Respect for the Voices of People with Disabilities in Western Societies.” International Journal of Disability, Community, and Rehabilitation 9(1): 18. Lagacé, Claudia, Anthony Perruccio, Celina Degano, and Marianne Nichol. 2010. “What is Arthritis and How Common Is It?” In Life with Arthritis in Canada: A Personal and Public Health Challenge, edited by

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Public Health Agency of Canada et al., 16–31. Ottawa, ON: Centre for Chronic Disease Prevention and Control. http://www.phac-aspc.gc.ca/ cd-mc/arthritis-arthrite/lwaic-vaaac-10/pdf/arthritis-2010-eng.pdf. Lupus Canada. 2012. “Living with Lupus – Questions.” http://www. lupuscanada.org/english/living/lupus-overview.html. Lynk, Michael. 2002. “Disability and the Duty to Accommodate: An Arbitrator’s Perspective.” In Labour Arbitration Yearbook 2001–2002, 51–122. Toronto, ON: Lancaster House. Multiple Sclerosis Society of Canada (MSSC). 2009. “Meeting the Needs of Canadians affected by Multiple Sclerosis: Today and Tomorrow.” Last modified 14 August 2009. http://www.mssociety.ca/en/involved/ ­advocacy/socact_brief_fin2010prebudgetconsult_aug09.htm. O’Brien, Kelly K., Ahmed M. Bayoumi, Carol Strike, Nancy L. Young, and Aileen M. Davis. 2008. “Exploring Disability from the Perspective of Adults Living with HIV/AIDS: Development of a Conceptual Framework.” Health and Quality of Life Outcomes 6: 76. Ontario Human Rights Commission (OHRC). 2000. Policy Guidelines on Disability and the Duty to Accommodate. Toronto, ON: OHRC. Last revised November 2009. http://www.ohrc.on.ca/sites/default/files/ attachments/policy_and_guidelines_on_disability_and_the_duty_to_ accommodate.pdf. Otto, F. Wahl. 1999. “Mental Health Consumers’ Experience of Stigma.” Schizophrenia Bulletin 25(3): 467–78. Public Health Agency of Canada (PHAC). 2009a. ”Mental Illness Facts and Figures.” Last modified 23 April 2009. http://www.phac-aspc.gc.ca/ cd-mc/mi-mm/mi_figures-mm_figures-eng.php. – 2009b. “Summary: Estimates of HIV Prevalence and Incidence in Canada, 2008.” Last modified 25 November 2009. http://www.phac-aspc. gc.ca/aids-sida/publication/survreport/estimat08-eng.php. Roessler, Richard T., and Phillip D. Rumrill. 1998. “Reducing Workplace Barriers to Enhance Job Satisfaction: An Important Post-Employment Service for Employees with Chronic Illnesses.” Journal of Vocational Rehabilitation 10(3): 219. Spataro, Sandra, E. 2005. “Diversity in Context: How Organizational Culture Shapes Reactions to Workers with Disabilities and Others Who Are Demographically Different.” Behavioral Sciences and the Law 23: 21–38. Statistics Canada. 2012. “Population by Year, by Province and Territory.” Last modified 27 September 2012. http://www.statcan.gc.ca/tablestableaux/sum-som/l01/cst01/demo02a-eng.htm.

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von Schrader, Sarah, Valerie Malzer, William Erickson, and Susanne M Bruyère. 2011. Emerging Employment Issues for People with Disabilities. Ithaca, NY: Employment and Disability Institute, ILR School, ­Cornell University. http://digitalcommons.ilr.cornell.edu/cgi/ viewcontent.cgi?article-1288&context-edicollect.

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Narrative Preface: Corinne’s Story corinne stevens

Tansi. I am a two-spirit woman of mixed Aboriginal and European heritage, and live following the traditional teachings of the Cree people. I am actively involved in Aboriginal culture and spirituality. I am married to a woman and have a house full of special needs pets. Many years ago, I had a workplace injury to my left shoulder that required reconstructive surgery and left me with limited mobility in my arm and shoulder. Unable to return to work in corrections, I went back to university and acquired my master’s degree in marriage and family therapy, fulfilling a lifelong dream of being a therapist. During that time I fell down a flight of stairs, which resulted in two herniated discs in my back. Sometimes I am barely able to walk. Sitting is extremely difficult and the pain in my shoulder and back is debilitating. I live with fluctuating chronic pain that requires me to get very creative in my work life. I am a marriage and family therapist. I work half time as a clinical therapist at a residential addictions treatment facility for the Behavioural Health Foundation Inc., and the rest of the time I have a private practice (Where The 2 Rivers Meet Therapy Services) in Winnipeg, Manitoba, where I work with children and adults. I also work with First Nations people in remote fly-in communities. There is no one to do my job if I am not able to function and I do not get paid for not working. I do not attempt to hide my difficulties with pain; rather, I use it as a teaching moment in therapy. We – my clients and I – discuss the different aspects of a person:

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the physical, emotional, mental, and spiritual. I share how I have used mindfulness (bringing awareness into all aspects of living) to embrace pain rather than running away from it. I highlight how using this awareness helps me listen to my body and what it needs. I also speak of my use of meditative techniques and prayer to get through those days when everyday living is a challenge. I am open with clients when I have problems moving or getting down on the floor with children. People often do not see therapists as human beings with their own struggles and issues. I help clients see my role as someone who walks alongside them, as a human being just like them, who struggles and is less than perfect. I invite conversation about our similarities and differences. I have found that clients appreciate my humanness, and it provides space for them to feel as if they do not have to be ashamed of talking about or acknowledging their own. I do therapy somewhat differently than the Western approach of a hierarchal order, whereby therapists keep all remnants of their life secret from the client. I believe it is more helpful for clients to recognize that I have things that I struggle with and I am able to cope with them successfully, as can they.

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7 Chronic Illness among Immigrant Workers in Canada: An Overview of Existing Knowledge i f fat h u . b . s y e d

Immigrant workers play a significant role in Canadian economic and social development. Citizenship and Immigration Canada, the government department responsible for immigration policy, seeks to strengthen Canada’s economy by targeting economic immigrants who have skills and qualifications CIC deems desirable (CIC 2012). Approximately 250,000 permanent residents are landed each year, and between 2001 and 2010 over 50 per cent emigrated from source countries in Asia and the Pacific (CIC 2011). The majority of newcomers (186,913 of 280,681 in 2010) come to Canada in the economic immigration category, mostly as skilled workers, in line with policy goals (CIC 2011). As such, immigrants’ employment experiences are an important area of study, and chronically ill newcomers face particular risks and challenges. In this chapter I examine how chronically ill Canadian immigrants experience work and the workplace, with a focus on understanding how the experience differs according to cultural background, employment background, and gender. I also consider issues that pertain to the development of chronic illnesses among immigrant workers. I report on studies of immigrant workers from urban Canadian areas such as Vancouver, Montreal, and Toronto, which have been popular destinations for migrant settlement in the last two decades (Schellenberg 2004; Kosny, MacEachen, et al. 2011). In the section that follows, I offer a broad overview of the nature of work for Canadian immigrants, including the occupational

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health risks they may face that can lead to onset of chronic illness. Following this overview, I then provide an in-depth examination of three areas of research on immigrant workers’ experiences of the workplace and chronic illness that have received particular attention, framing these examinations as case studies. In the first case study, I explore the relationship between musculoskeletal conditions and the nature of female immigrants’ work. In the second, I examine the role that acculturation plays in the relative importance that different immigrant groups give to the risks, hazards, and negative health outcomes associated with work. In the third, I look at issues of stress and mental illness brought on by immigrants’ underemployment or unemployment once in Canada. Following these sections, in which I review existing research, I offer a discussion of what I consider five significant knowledge gaps and data challenges that must be addressed in order to advance our knowledge in this domain. t h e n at u r e o f w o r k f o r c a n a d i a n i m m i g r a n t s

Immigrants to Canada are not likely to arrive with a pre-existing chronic illness or disability, because there are medical inadmissibility provisions in immigration policy that prevent immigrants with a chronic disease, disorder, or disability from becoming permanent residents. Appeals can, however, be made if a family member sponsors the migrant and is willing to pay the medical bills to relieve the “burden” of such illness (Capurri 2010; Sweet, Anisef, et al. 2011). Those who are approved as immigrants to Canada tend to be highly qualified and skilled workers capable of contributing to various industries (Statistics Canada 2007). Nevertheless, immigrant workers are more likely than their Canadian-born counterparts to work in dangerous occupational industries and physically demanding jobs such as food preparation, meat packing, cleaning, construction, and manufacturing (Thurston and Verhoef 2003; Clark and Hofsess 1998; Statistics Canada 2007; Smith, Chen, and Mustard 2009; Smith and Mustard 2009; Premji, Duguay, et al. 2010). Consequently, immigrant workers are vulnerable to acquiring not only acute work-related injuries and illnesses (Smith, Kosny, and ­Mustard 2009; Smith and Mustard 2008; Thurston and Verhoef 2003), but also chronic illnesses such as cardiovascular disease, cancer, and musculoskeletal diseases (Premji, Duguay, et al. 2010). These w ­ orkers

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are also vulnerable to mental health difficulties that stem from their working conditions (Crooks, Hynie, et al. 2011). Immigrants to Canada may take up poor quality or hazardous occupations that do not match their education, credentials, skills, or experiences for a number of reasons (Crooks, Hynie, et al. 2011). For example, the process of resettlement is expensive and may require some newcomers (i.e., those within their first few years of arriving to Canada) to take jobs for which they are over-­qualified in order to gain immediate access to needed income (Kosny, MacEachen, et al. 2011). As well, immigrants may face problems such as lack of recognition of foreign credentials or education, or difficulties in obtaining credential verification (Chen, Smith, and Mustard 2010; Crooks, Hynie, et al. 2011; Li 2001; Thurston and Verhoef 2003); lack of Canadian work experience employers might require or recognize (Smith and Jackson 2002; Crooks, Hynie, et al. 2011); lack of access to the social support system that would otherwise enable networking and desirable employment (Buzas and Nesterenko 1992; Crooks, Hynie, et al. 2011); and/or lack of full fluency in English or French (Chui and Tran 2005; Sandys 1998), which could lead to further discrimination based on communication. Thus, immigrants often face poor employment prospects and low wages ­(Lawton, Ahmad, et al. 2006; Li 2001; Reitz 2005; Reitz 2007a; Reitz 2007b; Reitz and Banarjee 2007; Somerville and Walsworth 2010), and often end up working in service and manufacturing industries (Thurston and McGrath 1993). Due to underemployment and settlement-related setbacks in the standards of living, immigrants may question their identity and self-worth, which has a negative impact on mental health and wellbeing and can contribute to the development of chronic illness. For example, Chen, Smith, and Mustard (2010) found that immigrants were more likely than non-immigrants to report a decline in their mental health due to their over-qualification for jobs based on experience or expectations. In another study, an Urdu-­speaking newcomer immigrant woman from Pakistan summed up her experience of menial employment in Canada as “torture” (Crooks, Hynie, et al. 2011, 144). A study of disabled Chinese immigrants in Toronto found they commonly experienced downward social mobility because of common underemployment (Lee, Rodin, et al. 2001). The precarious situation that immigrant workers face in the Canadian workplace is consistent with the changing global economic

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climate characterized by economic insecurity, free trade, self-sufficiency, and self-employment (Jones 2004), as well as the decreased availability of full-time work and concomitant increases in part-time work and work with uncertain premises or prospects. Precarious employment may result in the onset of stress-related disorders for newcomer immigrants (Crooks, Hynie, et al. 2011). For example, newcomer immigrants may meet the financial demands of high rent and taxes when they live in urbanized and expensive places, such as Toronto, by working multiple jobs with long hours, which can bring on stress and negatively impact their mental health (Crooks, Hynie, et al. 2011). This unsettling situation predisposes immigrants to not only psychosocial risk factors for illness, but also the risk of cumulative trauma disorders and musculoskeletal-based chronic illnesses. Meanwhile, the precariousness of their employment may lead immigrants to not disclose the onset or preexistence of chronic illnesses and other health conditions for fear of job loss (Thurston and ­Verhoef 2003; Smith, Kosny, and Mustard 2009; Magalhaes, ­Carrasco, and Gastaldo 2010). c a s e s t u d y o n e : m u s c u l o s k e l e ta l c o n d i t i o n s a m o n g female immigrant workers

As discussed in other chapters in this collection, musculoskeletal conditions are one of the most widespread chronic illnesses, and range from disorders affecting the joints to back pain, repetitive strain injuries, spinal disorders, sprains, dislocations, and fractures (Canadian Orthopaedic Care Strategy Group 2010). Women tend to experience specific types of musculoskeletal conditions more frequently than men, which may indicate gendered occupational duties (Messing 1998). The financial pressures immigrant women face mean that taking time off work to manage a chronic illness may not be possible. Indeed, in a qualitative study by Ahmad, Vanza, et al. (2005), one of the South Asian immigrant women who participated in the focus groups stated: “A friend of mine, her arm hurts and even though it is hurting, she still goes to work and she has to operate a printing machine ... despite having pain” (120). Such pain is consistent with a musculoskeletal condition, and in this case the woman’s friend continued to work despite symptom exacerbation (Aversa and Carlan discuss similar cases of working despite pain in chapter 3 of this volume).

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Immigrant women engaged in employment are susceptible to musculoskeletal conditions because of their dual roles in the workplace and at home, which can lead to physical and emotional stress. They are especially susceptible because they are typically the main caregivers in families and communities (Liladrie 2010; Meleis, Lipson, et al. 1998; Spitzer, Neufeld, et al. 2003). Karnaki, Polychronakis, et al. (2008) have thus observed, “musculoskeletal disorders are more prevalent among [such] women because of their segregation into sedentary, repetitive and routine types of work and because of more involvement in domestic work at home” (6). Research shows that newcomer immigrant women are particularly vulnerable to acquiring musculoskeletal conditions in the workplace because they are often engaged in occupations that require manual, repetitive movements, such as in the textile, hairdressing, food-­service, hotel services, and garment industries (Polychronakis, Riza, et al. 2008). As evidence of this, 93 per cent of housekeepers in Toronto are immigrants and 80 per cent are women (Liladrie 2010). A study by Liladrie (2010) found that female hotel housekeepers in Toronto who emigrated from Jamaica experienced a high degree of pain and injury in the workplace, with onset of pain beginning only after being hired as a housekeeper. They reported developing chronic pain that stemmed from working on their knees (consistent with bursitis of the knee), carpal tunnel syndrome, and back and shoulder pain (Liladrie 2010). Liladrie also found that the women, on average, self-reported significant declines in health after they started to work in the hotel industry. This experience is consistent with a phenomenon known as the healthy immigrant effect. The healthy immigrant effect recognizes that immigrants are typically healthy on arrival, due to careful selection, but the longer they reside in their new host country the more their health deteriorates and converges with that of the native-born population (Newbold and Danforth 2003). c a s e s t u d y t w o : t h e r o l e o f c u lt u r e a n d

a c c u lt u r at i o n i n i m m i g r a n t s ’ w o r k p l a c e h e a lt h

Cultural and individual norms, values, and beliefs can influence occupational behaviours, which in turn can render an immigrant more or less likely to sustain injury and illness. These norms can also influence whether or not an immigrant seeks workplace ­accommodation

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when they have a pre-existing illness or if they develop chronic illness while employed. For example, is an immigrant worker from China likely to react to a new occupational injury or put in a request to accommodate an existing chronic illness in the same manner as an immigrant worker from India? Answering this question requires an acculturation lens to explain occupational risk perception. An acculturation lens measures adaptation and cultural change from the country of origin to the new culture of the host/destination country (Sam and Berry 2010). For example, Johansson and Salminen (1999) found that Swedish-speaking individuals in Finland had lower rates of injury compared to Finnish-speaking individuals. Although the reason for this was not necessarily individual-level cultural beliefs, there was a cultural-linguistic element at work as Johansson and Salminen found that the Swedish-speaking enterprises in Finland had newer machines and were better financed compared to the Finnishspeaking enterprises (Johansson and Salminen 1999; Thurston and Verhoef 2003). Unfortunately, little research exists about the role of acculturation in the health statuses of Canadian immigrant workers, and particularly as this relates to chronic illness. However, the relevance of acculturation to the health-related and chronic-illnessmanagement-related decisions immigrant workers in Canada make cannot be discounted (see, for example, Aversa and Carlan’s discussion of an immigrant worker’s experience negotiating the workplace after acquiring a work injury in chapter 3 of this volume). Research by Thurston and Verhoef (2003) addressed the effects of culture and religion on occupational injury in Canada, and found that among immigrants, Buddhists had reported higher rates of injury compared to other religious or cultural groups. A majority of these individuals (84.5 per cent) were found to be of Chinese and Vietnamese heritage (Thurston and Verhoef 2003). The researchers explain that these observations could be due to the fact that in some religious and cultural belief systems a strong belief in “fate” could potentially influence behaviour, wherein an individual may be less likely to take safety precautions or ask for accommodation or assistance because their workplace health is already determined; this ultimately places individuals at greater risk of injury (Maurice, Lavoie, et al. 1997; Thurston and Verhoef 2003). The researchers also suggest that Buddhist immigrants could face discrimination compared to non-Buddhists as they seek and maintain employment. As a result, Buddhist workers may be more likely to become

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employed in marginal jobs that pose significant health risks and as a result experience higher rates of workplace injuries – injuries that often lead to chronic pain, among other chronic conditions. While the acculturation lens is useful to understanding immigrants’ experiences of work and the workplace because it prioritizes adaptation and cultural change, research on this important issue is lacking. Furthermore, existing studies of the health status of Canadian immigrant workers often mask acculturation’s true role or impact. For example, in a study of ill or injured immigrant workers’ access to income replacement benefits, Smith, Kosny, and Mustard (2009) categorize immigrants into a single group without taking into account their country of birth (and hence cultural influences). Although they do not attend to cultural diversity in their study, Smith, Kosny, and Mustard (2009) conclude that immigrants have homogenous occupational behaviours. From an acculturation viewpoint, however, this is not necessarily true – research shows significant differences in injuries and illness among immigrants due to various cultural norms and socio-political backgrounds. c a s e s t u d y t h r e e : s t r e s s a n d m e n ta l i l l n e s s a m o n g immigrant workers

While minority status and marginality itself can be considered a significant life stressor for immigrants (Moritsugu and Stanley 1983; Vega and Rumbaut 1991), researchers have found that unemployment and underemployment for Canadian immigrants can negatively impact their psychological well-being and adaptation to Canada (Aycan and Berry 1996; Crooks, Hynie, et al. 2011). For example, a study focused on immigrant women’s mental health found that one of the most problematic sources of stress for female newcomer immigrants to Toronto was the downward social mobility that came from unemployment, underemployment, or the devaluation of work skills or experience (Crooks, Hynie, et al. 2011). This finding is consistent with broader research that shows that when individuals are unable to meaningfully participate in their desired occupation, their physical and mental health and well-being may be disrupted, resulting in negative health outcomes (Law, Steinwender, and Leclair 1998; see also Oldfield in chapter 1 of this volume). Mental stress in the workplace is associated with problems in communicating and connecting to co-workers, pressures to compete

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with co-workers to meet production quotas or with pacing work for fear of job loss, and social exclusion or bullying in the workplace (Basok 2004; Bearwood, Krish, and Clark 2005; Premji, Messing, and Lippel 2008). These problems are amplified for immigrants who experience language barriers. Although other workers who speak the same language can provide social support, language barriers that immigrant workers experience can lead to insufficient social interactions in the workplace as a whole, resulting in long-term psychological stress and strained work relations (Premji, M ­ essing, and Lippel 2008; Basok 2004). The lack of social support in the workplace is detrimental to not only psychological but also physiological health, as the presence of social support in the workplace is reportedly correlated with lower rates of musculoskeletal disease ­(Nieuwenhuisjen 2004). It is possible that wage disparities between Canadian workers as a whole and immigrant workers specifically influence and perpetuate mental stress and the onset of chronic mental health conditions. For example, in a Toronto study of hotel workers – an employee group with high rates of immigrant workers – Liladrie (2010) found that the median annual wage of these workers was $26,000 in 2004, or less than half of what the average male with a bachelor of arts degree earned in Toronto (extrapolated from Statistics Canada 2006 data and adjusted for the Consumer Price Index). One worker in this study described the conditions in her workplace and the corporation’s treatment akin to slavery: “They are slave owners: they don’t care about the slaves; they only care about the cotton being picked” (Liladrie 2010, 63). Such working conditions and pay disparities can have significant negative mental health consequences for immigrant workers. d ata c h a l l e n g e s : l i m i tat i o n s o n u n d e r s ta n d i n g

c h r o n i c a l ly i l l c a n a d i a n i m m i g r a n t s ’ e x p e r i e n c e s o f the workplace

As I indicated at the start of this chapter, little literature examines the experiences of chronically ill immigrant workers or the ways in which the types of work immigrants commonly perform result in chronic illness. In the preceding sections I have provided an overview of some of the research that does exist; however, significant knowledge gaps remain. These gaps not only reflect areas of research that

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have yet to gain adequate attention, but also challenges that exist regarding gaining access to data. In this section I identify five specific knowledge gaps and data challenges. First, quantitative research often portrays immigrant subgroups as homogenous, and categorizes them by country of birth or migratory origin. While this might be an ideal strategy for a researcher, in reality immigrants are often born in one country but migrate several times before they arrive in Canada (Greenwood and Young 1997). The experiences of these multi-migratory workers may encourage or discourage work in a particular field or industry upon arrival in Canada, and may also shape familiarity or experience navigating workplace accommodation and the compensation systems after developing a chronic illness. Simplistic quantitative analyses may mask these complexities. Second, data that do exist about chronic illness among Canadian immigrant workers often come from samples of workers who applied for compensation and experienced injuries or illness in the workplace. There is, however, typically no interpretation as to whether such injuries are chronic or acute in nature. Furthermore, there is also a lack of adequate coding practices in obtaining data on Canadian immigrants who experience work injuries. Further qualitative work needs to be done in this area in order to understand the relationships between risk, exposure, and experience of occupation-related chronic illnesses among immigrants. For example, what is the relationship between these factors and acquiring a condition such as contact dermatitis? An acculturation lens may assist with qualitatively examining this relationship. Third, chronic occupational injury and illness data on women are scarce, and data are usually lumped into a single category. This is problematic given the types of gendered experiences reported on in the previous sections and the importance of considering gender norms and roles in understanding immigrants’ experiences of work – with or without chronic illness. Furthermore, there is a need to understand the diversity among and between immigrant women in order to avoid overly simplistic portrayals of their experiences. It would be ideal to have quantitative datasets that would allow for data to be stratified by the number of years that immigrants have resided in the host country, as well as their ethnic background and culture (country, homeland) of origin in order to address the diversity within the immigrant female population.

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Fourth, while the Canadian health and social care systems provide health promotion, protection, and compensation to workers, immigrant workers might be unaware of the compensation system or fearful of reporting their injuries to their employers and supervisors, who must report serious injuries to the provincial ministries of labour and worker compensation boards. Evidence of under-­reporting of workrelated injuries by immigrants is supported by a study in Alberta, in which immigrants reported lost-time rates almost twice as high as those reported in samples cited by the provincial compensation board (Thurston and Verhoef 2003). The under-reporting of workplace injuries means using ministry of labour data to fully examine trends among immigrant workers who develop work-related chronic illnesses is less reliable. Compounding this challenge, while worker compensation boards stratify injury statistics by age (e.g., youth, adult), sex (female, male), and industry type (e.g., manufacturing, transportation, etc.), their reports do not distinguish injury data by immigration status. Fifth, some existing analyses, particularly quantitative ones, group immigrants into a single category and compare them to Canadianborn individuals. This does not reflect the rich diversity in the Canadian population, and interpretation of such analyses is consequently over-simplified. One of the reasons such studies continue to occur is because datasets are not rich enough to enable more-sophisticated analyses. Data collection should involve dividing and grouping data by categories such as visible minority status, ethnicity, and/or country of origin (e.g., East Asian, South Asian, Caribbean, African American), foreign-language abilities (e.g., Hindi-speaking, Spanishspeaking), and sensitivities in non-geographical self-­identifiers of colour, race, ethnicity, or religion. Doing so would ensure that research findings reflect diversity and would help to illustrate how different language proficiencies, cultural backgrounds, and belief systems may influence attitudes in negotiating the experience of chronic illness in the workplace. conclusion

In this chapter, I have examined chronic illness and the problem of work-related experiences of Canadian immigrants. Although existing research on the subject is minimal, my examination of the­

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literature has allowed me to identify particular areas of robust research inquiry: (1) musculoskeletal conditions and the nature of female immigrants’ work; (2) the role acculturation plays as different immigrant groups evaluate the risks, hazards, and negative health outcomes associated with work; and (3) the development of stress and mental illness brought on by immigrants’ underemployment or unemployment once in Canada. Overall, my examination of the literature shows that some immigrant worker groups, such as newcomer immigrant women, face particular vulnerability to chronic illness and/or workplace injuries. My review of the literature has also allowed me to identify some pressing knowledge gaps and related data challenges that exist in this area of scholarship. Immigrants make up an important and expanding segment of the Canadian labour force. For a variety of reasons, however, their experiences tend to be different from those of Canadian-born workers. We need to be careful to attend to the ways in which their experiences differ (see also chapter 4), and we need to be especially careful that we do not homogenize or reify “the immigrant experience.” This requires sensitivity to ways in which immigrants themselves differ according to a variety of factors such as visible minority status (i.e., there is a need to recognize that not all immigrants are visible minorities), language proficiency, cultural background, and belief system. Only when this immense diversity among immigrants is recognized will we be able to appreciate that there are a variety of ways in which immigrants negotiate chronic illness in the workplace.

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­ algary, AB: Southern Occupational Health Resource Service, University C of Calgary. Thurston, Wilfreda E., and Marja Verhoef. 2003. “Occupational Injury among Immigrants.” Journal of International Migration and Integration 4(1): 105–24. Vega, William A., and Rubén G. Rumbaut. 1991. “Ethnic Minorities and Mental Health.” Annual Review of Sociology 17: 351–83.

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8 On Being a Princess and a Problem: Negotiating Attitudinal Barriers to Chronic Illness in Canadian Universities keri cameron and vera chouinard

Although Canadian human rights law is intended to protect disabled citizens from discrimination and encourage reasonable accommodation of their needs, disabled people, including those who are chronically ill, continue to encounter barriers to inclusion in places such as universities both as workers and students. In this chapter, we focus on how, as a female graduate student experiencing chronic pain while working as a teaching assistant and a chronically ill female professor needing accommodations, we have encountered attitudinal barriers that have helped to construct us as abnormal and out of place in the Canadian university workplace and academia more broadly. We use an autoethnographic approach (Ellis 2004; Ellis and Bochner 2006) to examine our experiences of being assigned devaluing identities as women who need accommodation in academia as a result of chronic pain and chronic illness. We argue that auto­ ethno­graphic accounts of such processes help to reveal contemporary forms of oppression and the continued exclusivity of academic spaces of learning and work. Autoethnography is an important tool for us because by reflecting on and writing about our stories and emotions as women experiencing chronic illness in academia, we have been able to make sense of what happens in these academic spaces and consider the meanings of such happenings. In doing so, we recognize the existence of power structures that privilege being

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able-bodied and so reinforce certain ideas of normalcy. Others have used autoethnography to give an experiential voice to chronic illness, including Greenhalgh (2001) who detailed her encounters with health services. We both experience feeling out of place in academia as we struggle for inclusion. In this chapter, we argue that gender and the (in)visibility of impairment are important in understanding ascribed identities, such as what it means to be a chronically ill academic, and their social meanings (a point also made in chapter 9 in this volume). These identities and meanings are, in a contradictory fashion, both internalized and contested. Struggling for inclusion in the face of such ascribed identities, for us, involves self-devaluation and a sense of feeling out of place. Self-devaluation might include, for instance, an individual believing that she is not as good as others based on particular traits. In addition to feeling devalued by ourselves and others in academic places of life, we struggle to reassert more affirming senses of self as people who are entitled to accommodation and inclusion, among other things. In reflecting upon our lived experiences of Canadian academic workplaces in preparation for this chapter, we have found a feminist intersectional framework a useful guide. At the micro-level of our individual selves, such a framework encourages us to consider how our experiences of attitudinal barriers reflect our complex positioning and identities at the crossroads of the multiple social identities we simultaneously inhabit (e.g., in terms of age, gender, type of impairment, appearance, and disability). These micro-level experiences of difference are, in turn, understood as bound up in macro-level structures of oppression and privilege (e.g., the university workplace, Canadian academia, and social expectations of work productivity) (Valentine 2007; Valentine 2008; Bilge 2010; Garry 2011). To begin this chapter, we discuss our different positionalities and some of the ways they have shaped our experiences of academia and the Canadian university environment. We then give accounts of being respectively constructed as a “princess” and a “problem.” We reflect on becoming impaired, the significance of ableist attitudes we encounter, the ways in which we have internalized ableism, the ways we cope, and how we resist ableism in academia. We conclude with reflections on what can be learned from our narratives of marginalization and what needs to change to make Canadian academic spaces more inclusionary.

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p o s i t i o n i n g o u r s e lv e s

Keri I started post-secondary education a decade ago as a college student. At the time I had been experiencing pain for over a year after having surgery to remove a large cyst from my tailbone. The surgery left a large lump of scar tissue surrounding the base of my spine and has since caused chronic pain that ranges from dull numbness and tingling to throbbing and stabbing sporadic pain. I am now a PhD student. As I contemplate my cumulative experience of being a student with chronic pain, a common theme is feeling as though my peers and post-secondary institution staff constructed me as a princess. I use the term princess because it suggests that I received special treatment for no reason other than who I am. In this case, others viewed my receiving accommodations – combined with my gender and my impairment’s invisibility – as me receiving special treatment, rather than recognizing my need for accommodation in order to have an equal opportunity to learn with my peers. I often felt marginalized by individuals who suggested my accommodations, which I discuss in detail in the section that follows, constituted special treatment. I internalized ableism in the academic environment because I felt devalued as a student. Campbell (2008) draws on critical race theory to define internalized ableism as the result of oppression. She states: “Ableism can be associated with the production of ableness, the perfectible body and, by default, the creation of a neologism that suggests a falling away from ableness that is disability” (153). In other words, ableism refers to discrimination based on ability and what is socially constructed as average. When an individual’s needs or abilities diverge from this socially constructed ideal, they may experience ableist attitudes. Individuals with chronic illness and pain, for instance, might require workload modification or accommodation in the workplace. Ableist attitudes in this case might include the belief that individuals such as myself are unworthy of being a graduate student or professor because we perform these roles differently than the normative expectation. As Samuels (2003) explains, claiming an identity based on nonvisible characteristics, such as non-visible impairment(s), is often met with suspicions of deception. In my case, I did not feel ­“disabled

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enough” to justify identifying as a disabled student in need of accommodation. That is, I felt that my pain was not a valid reason to request accommodation in the university because it was not visible. Other students also treated me as though I received special treatment in class and felt disentitled to accommodation. Vera When I was hired to teach in the geography department at my university, I was the only female and radical professor. As I recount below, both of these aspects of my positionality made me vulnerable to professional harassment and marginalization. Arguably, departmental colleagues constructed me as a problem even before I became chronically ill. Becoming ill complicated and added additional layers of meaning to my status as a problem in the academic workplace. At the time I became chronically ill with rheumatoid arthritis, I had just been promoted to associate professor and awarded tenure. While one might think that this position of privilege meant that my job was secure, in practice attitudinal barriers meant that this was not the case. From the outset, administrators pressured me to leave my position and collect disability benefits, and I felt very vulnerable to colleagues’ and students’ judgments that I was no longer valuable as a professor. My position as a professor undoubtedly added some authority and weight to concerns that I expressed regarding my need for accommodations as a chronically ill professor. However, it was not sufficient to ensure that I would be reasonably accommodated without outside legal intervention. o n b e i n g a p r i n c e s s at s c h o o l : c o n f r o n t i n g at t i t u d i n a l b a r r i e r s a s a s t u d e n t w i t h c h r o n i c pa i n

When I (Keri) give thought to my experience as a student with chronic pain for the past decade, I feel that my peers and post-secondary institution staff have constructed me as a princess who is undeserving of accommodation. In this section, I share some of the attitudinal barriers I have encountered in academia and discuss how I have struggled with and contested these constructed identities. The attitudes of others toward me as I have sought accommodation and used ergonomic devices in the classroom rendered me out of place. I have experienced ableist attitudes and practices throughout my studies.

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My first encounter with disability services – an office designated to help students with disabilities meet their learning and training needs – was when I started college in 2002. I called the institution to inquire as to whom I should speak about getting an ergonomic chair in the classroom, and was transferred to disability services. I made my first appointment for the week before class started. I was told to pick up forms for my physician to fill out, in order to verify that I had a medical condition requiring accommodation. My physician seemed shocked that I was asking for accommodations in the classroom for chronic pain. He suggested that, instead of seeking accommodation, I should not go to school if sitting was painful; he told me that rather than attend post-secondary school, I should find a job where I would not need to sit. His response seemed to convey that I thought I was a princess who required special treatment. I explained that I wanted to further my education and thus accommodation was necessary. Reluctantly, he filled out the forms to indicate that I have chronic tailbone pain and require an ergonomic chair. I felt uneasy during my first visit with my counsellor in disability services. The counsellor also appeared surprised that I wanted accommodation for chronic pain. She asked me why I had pain and where it was. She laughed when I said, “my tailbone hurts because I have scar tissue surrounding it from surgery.” She explained that disability services could not provide an ergonomic chair for a number of reasons. First, there was no way to police who used the chair in the classroom. Second, there was a chance that other students would use or remove the chair from the classroom when I was not in class. Third, back pain was not a valid reason for accommodation. My counsellor’s response to my accommodation request implied that I was “not disabled enough” for disability services to approve the use of assistive devices or other accommodative equipment. After having my physician fill out forms and waiting weeks in anticipation of a comfortable place to sit in class, I ultimately had to settle for hard plastic chairs that made my pain more severe for the two-year duration of my program. I experienced pain throughout my classes; my mind often wandered to the pain in my back while I should have been focused on lectures. The lack of comfortable seating available to me impeded my learning. My experience of seeking accommodation in college left me feeling undeserving of accommodation and ashamed that I had attempted

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to assert myself as a student with accommodation needs. Essentially, I felt not disabled enough. I felt that administrators had constructed me as a princess who expected the college would “give me a comfy place to sit in class,” rather than a serious student with chronic pain in need of accommodation in order to learn. Currently, as a graduate student, I realize that in addition to improvements in accommodation policies and practices in educational institutions since I was first in college, my position in the hierarchy of Canadian academia has also changed tremendously. While I continue to face barriers in academia as a female graduate student with chronic pain, the ways in which staff and students now treat me, and the accommodation measures I receive, have improved. For instance, the staff in disability services at my current university treat me respectfully as a doctoral student. In contrast, as a younger student I had felt as though I had very little power over my accommodation measures and little value as a student. The most positive experience of accommodation and overall support for my needs that I have had thus far in my academic career was as an undergraduate student in a disability studies program, which I enrolled in following my college program. Rather than going through the proper channels, such as a disability services office, to access disability services, I emailed professors directly prior to joining their classes to ask whether they could do anything to accommodate me. The response was positive. The first professor I emailed gave me a plethora of options to choose from, and shared her own experience of chronic pain with me. She said I could borrow her office chair, use an ergonomic chair from the department office, or bring in a couch from one of the meeting rooms to use in class. I decided a couch would be the best option. On my first day of class, there was an ergonomic chair and a couch for my use. As I approached the couch, the professor asked if I was Keri. She introduced herself and welcomed me. Her response to my accommodation needs reaffirmed that my inquiry was appropriate and justifiable. The attitudes of other students in my undergraduate program were a different story. The first negative instance was when a group of students explicitly referred to me as Princess. They asked, “Why do you get a special seat, Princess?” I felt the need to justify my accommodations and explained to students about my pain. Some of them laughed. Some made jokes about me having a “pain in the ass.” My classmates’ comments and reactions rendered me out of place.

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I lost a sense of belonging because they treated me as though I was different. The label princess is highly gendered. As a young female academic struggling for a place within academia, being ascribed the identity of princess due to accommodation needs was difficult; it added layers to the stigma I already faced as a female. For instance, as a blonde woman I have experienced negative comments about my intelligence. People often make blonde jokes around me or simply state, “You are so blonde!,” in ways that suggest I am not intelligent due to my hair colour and gender. Individuals have also suggested that I must have slept with professors in order to “make my way to the top,” implying that my gender and sexuality – and not my intellectual merit – assisted my entrance into graduate school. This not only sexualizes me, but also uses gender and appearance to undermine my intelligence and worth as an academic. My previous experiences within the university made me hesitant to seek accommodation as a graduate student. I was six months into my master of arts in disability studies before I decided to go to disability services to inquire about my options. The office required me to fill out a form stating whether my disability was physical, sensory, medical, learning, or mental-health related. I found the limited choices frustrating, and felt that the request to provide this personal information was an invasion of privacy. I did not understand the need for disability-specific information since the law simply requires individuals to inform schools and workplaces of the need for accommodation. Furthermore, in addition to feeling as though my privacy was being violated, I felt medicalized as I filled out the forms. Nonetheless, I indicated that my need for accommodation was related to medical disability and made an appointment with a counsellor. I felt that this requirement reflected deeply ingrained beliefs that disability is the result of an individual deficit and reinforced the idea that something was wrong with me. The counsellor asked about accommodations I had received at previous post-secondary institutions, and then informed me that it would not be possible for me to have an ergonomic chair in the classroom because people might remove it and there was no way to ensure other students would not sit in the chair. The counsellor arranged to reimburse me for a seat cushion instead of an ergonomic chair. Hesitantly, I purchased a cushion and gave my counsellor the receipt. The cushion did not fit the c­ lassroom

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chairs properly, and slid off them when I sat down. It was not the best fit for my needs and did not work to relieve pain. I became frustrated being in constant pain. Other students in class constantly asked what the cushion was for and often laughed when I shared my experience of pain. I assume the laughter was, once again, a reaction to the bodily location of my pain. My counsellor wanted to know specific details about my needs and my condition, and asked me what kinds of treatments I had sought. As it happened, a few years prior I had seen an orthopedic surgeon who suggested cortisone shots in my tailbone. He inserted a needle with cortisone and a numbing agent through the scar tissue and into a few places between each section of my tailbone. After the treatment, I experienced ten days of intense pain followed by relief for about a month before my usual pain returned. After I spoke with my counsellor, I felt obliged to try the procedure again. I had the same initial results of stabbing pain in my back. Following this unsuccessful treatment, I quickly emailed my counsellor to inquire as to whether it would be possible to get a couch in the classroom. Thankfully, this process moved very quickly and the institution provided a couch that allowed me to lie down in class. The other students in my graduate classes demonstrated ableist attitudes in response to my couch. I found this surprising, considering that these students were disability studies scholars just like me. They asked why I had special treatment and giggled when I explained my pain. As a result of their comments, I once again felt as though my pain was not a valid reason for seeking accommodation, or rather, what others saw as special treatment. Essentially, I felt recast as a princess and I further internalized these feelings. I once again faced ableism while I sought accommodation as a doctoral student. For example, other students in my program questioned me when I brought an ergonomic chair from another office into the classroom. When I received accommodation for writing my comprehensive exam, friends and fellow graduate students suggested that telling others would negatively affect my credibility. They seemed to suggest that because I was given extra time to complete the exam (typically written in a single eight-hour sitting), I was given an unfair advantage in an onerous rite of passage. In fact, I was allotted extra time for breaks and a room with an ergonomic chair, cot, and standing table. These accommodations were necessary considering that, depending on the state of my pain, I typically begin

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to lose focus after sitting for between ten and thirty minutes. This makes writing for long stretches of time difficult, and I have learned to cope by taking frequent breaks. Others’ attitudes rendered me out of place in that I felt excluded from feeling “normal” and taking part in an exam in the same way as other graduate students. I lost a sense of belonging when I was advised not to share the nature of my accommodation with others. o n b e i n g a p r o b l e m at w o r k : g r a p p l i n g w i t h at t i t u d i n a l b a r r i e r s a s a c h r o n i c a l ly i l l a n d disabled female professor

When I (Vera) reflect back on my more than two decades of being a chronically ill female professor, it is clear that a common thread in my experiences has been encounters with students and colleagues that constructed me as a problem in the academic workplace. Some such encounters were fleeting. Others were more sustained. Yet both left indelible marks on my psychic and emotional life and sense of what it means to live with chronic illness. In what follows, I share some of these encounters and what it has been like to grapple with attitudes and practices that, in complex ways, constructed me as not belonging in academia. When I became ill and visibly impaired with rheumatoid arthritis in 1989, I could not have imagined the extent to which related changes in my embodied life, such as using an electric scooter, would be met by ableist attitudes and practices within my university workplace and beyond. Such attitudes devalued my presence as an academic worker, disabled me as someone who no longer belonged, and cast me as a problematic working body. Sometimes these encounters were fleeting – brief moments in which acts that devalued and excluded me ruptured the illusory veneer of an inclusive academic workplace. One ableist encounter took place in a graduate class that I was teaching. Discussion had turned to issues of marginalization in society and space, and my own case as a chronically ill professor. I had just explained that my undergraduate teaching load had been adjusted as part of an accommodation plan when a graduate student pointedly asked: “How do you justify your existence then?” The implicit message was, with academic jobs scarce and competition for them intense, why have a professor who could not work as productively as others did? I was, in other words, a problematic,

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defective academic worker. I responded by stressing that disabled professors bring special insights and expertise to their work, such as an enhanced awareness of disability issues and first-hand experience. Following an awkward moment of silence, I steered our discussion away from my particular case. Nonetheless, the message that I no longer belonged in academia lingered. Other fleeting encounters occurred with people on campus whom I did not know. I noticed, for example, that my “enwheeled” bodily presence on campus was met by stares from strangers – acts that reinforced my sense of no longer belonging on campus and in academia. Sometimes they would ask me invasive questions. For example, a passing student stared and demanded, “What’s wrong with your legs anyway?” The message I took from this was that I was regarded as defective – a message that disabled people in and outside of academia often receive. Being constructed as a problematic academic working body has also involved more sustained encounters with attitudinal barriers – that is, attitudes conveyed on a repetitive basis through performative acts of devaluation. Looking back, I realize that these encounters in particular have highlighted how being rendered as a problem in the academic workplace plays upon multiple facets of the differences one embodies. It is therefore important to think about the intersectionality (see Valentine 2007) of our changing lived identities and the identities ascribed to us through acts of devaluing those who are different from the academic norm. I was regarded and treated as a problem in the academic workplace even before I became chronically ill. From the outset of my career, I felt others constructed me as a lesser academic worker on the basis of gender and devalued my approach to research and teaching. As the sole female professor in my department and the only radical geographer, I was a target of professional harassment by the chair and some other colleagues. The chair berated my professional choices (such as the journals in which I published and the conferences I attended) on a repeated basis when he accosted me in my office after usual working hours. Other colleagues advised students who wished to work with me that I did not do “real” research and that their futures would be jeopardized if we worked together. I struggled to counter constructions of me as incompetent and not really belonging in academia by, among other things, continuing to work hard and advising students that a university was a place for

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debate and different perspectives and that being radical did not preclude real research or teaching. Other sustained encounters made it clear that gender, as well as radicalness, was a basis for acts that devalued my presence in the academic workplace. One colleague repeatedly and patronizingly told me that if my career “didn’t work out” I could always stay home and devote my energies fully to raising my two young children (which simultaneously constructed me as a lesser academic working body as well as a “bad mother”). I also began to notice other, more subtle acts that devalued my presence in the academic workplace. For example, I was regularly ignored in faculty meetings, to the point where I felt as though I were invisible. If I, as the sole academic woman there, tried to contribute to the discussion, the discussion would move on as if I had not said a word unless a male colleague flagged my point as important, which rarely happened – it felt like being in a surreal world where my voice had no impact whatsoever. It also appeared, according to remarks filtering back to me via students, that colleagues regarded me as overly ambitious and outspoken (i.e., “for a woman”). In other words, as a woman with a radical perspective, I was a problem. Becoming chronically ill with rheumatoid arthritis and what was later diagnosed as bipolar disorder (also known as manic depression) further complicated and reinforced my status as a problematic female worker in academia. Two years before I became ill with arthritis, ongoing harassment from my chair and some colleagues caused me to turn to a trusted male colleague for help. Unfortunately, he met my story with disbelief. Together, the harassment and disbelief triggered my first encounter with mania, characterized by racing thoughts and agitation. I was hospitalized and was thus absent from my academic workplace. With the exception of a chair whom I recently informed that I live with manic depression, the subject of my ill mental health has not come up in discussions with colleagues. The stigma that surrounds mental health issues, which is perhaps especially pronounced in a vocation like mine where intellectual skills are prized, makes me reticent to share this facet of my life. But mental health issues also remain a taboo subject in places of academic work and society in general. This facet of my life is thus rendered invisible, which is an alienating and isolating experience. Two years after my first experience with mania, and as the rheumatoid arthritis flared in all of my joints and my mobility became

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increasingly impaired, I grappled with both physical and attitudinal barriers to my inclusion. For months, my repeated requests for a disabled parking spot on campus were refused, though I provided ample medical documentation attesting to my pain and mobility limitations. I later discovered that this was because the director of what I came to refer to as parking (dis)services had decided that my disabled working body was a problem in not being disabled enough to deserve such a spot. I initiated these requests before I began to use a mobility device, and thus the invisibility of conditions such as pain played a role in his resistance to granting an accessible parking spot I badly needed. At the same time, others constructed me as a problem in terms of not being able enough to remain in academia. Some colleagues suggested that my career was over, while others in administrative positions suggested that I should relinquish my job and begin to collect disability benefits. I was, in other words, a problem because people assumed my illness meant I was no longer able to do my job – at least in terms of meeting the usual expectations of professors. They thus assigned me an identity as an incapable professor rather than as a professor still able to do her job, only differently. I encountered other attitudes and practices in my home academic unit that constructed my needs and requests for physical access as at best inconvenient to others, and at worst as an unfair imposition. As a scooter user, for example, I required an automatic door opener in order to independently access faculty meetings. Although one had been installed, it was never turned on and I was forced to knock on the door and wait for someone to open it for me. As a result, my entry to meetings was less independent and more disruptive than it would otherwise have been. When I inquired as to why the automatic door opener was never activated, I was told it was because if it were, then someone would have to remember to turn it off in order to lock the door at the end of the workday. My needs were, in other words, too inconvenient to meet. There were also attitudes and acts that conveyed skepticism about the veracity of my physical access needs and requests. For instance, for several years in my home academic unit, events were held in locations that were physically inaccessible to a scooter user and persons with mobility impairments more generally. Although I objected to this practice, it continued. When my graduate students also complained, the person responsible for booking rooms for these events

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told them: “Oh, Vera would get in if she really wanted to.” Once again, I was constructed as a problem in terms of unfairly imposing what others perceived as illegitimate access requests. In this way, I was assigned the identity of a professor who made unreasonable and fraudulent access and accommodation requests. This identity was extremely frustrating and disheartening, and fuelled my sense of alienation from and marginalization within my home academic unit. Another aspect of being constructed as a problem in the academic workplace was related to my prolonged economic devaluation in the form of systemic salary discrimination. I was chronically ill and required workload modifications, and so administrators viewed me as much less valuable than my non-disabled counterparts. Under an initial accommodation agreement, the university agreed to pay onehalf of my salary with the remainder to be paid to me through disability benefits. What this meant in practice, however, was that my salary was effectively frozen at the relatively low associate professor salary I was earning at the time I became ill with rheumatoid arthritis. Although my performance was regularly assessed and recommendations made for salary increments, the university refused to honour those recommendations. Staff from the human resources department argued that they could not raise the salary portion of my income because if they did, the insurer would claw back the equivalent amount in benefits. After eight years of trying to get the university to remedy this situation internally, I finally in exasperation took legal action. Taking legal action against the university further complicated the ways in which I was constructed as a problem in academic spaces of life. University administrators seemed particularly concerned with the very real possibility that my case would set a precedent in terms of accommodating disabled professors, and would expose the fact that the university had violated my human rights. My legal action was a problem because it promised to tarnish the university’s reputation. As some administrators were reported to have said after finding out that I had published an article about the early years of my struggles for accommodation, it would “not make us look very good” (Chouinard 1995/96). University administrators, in their negotiations with my lawyer and me, tried to minimize the chance my case would set a precedent and the university would be seen as illegally violating my human rights. Administrators insisted that any accommodations that I had

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received were the result of an individual, gratuitous arrangement between the university and myself. In other words, mine was a special case without implications for future situations in which disabled professors might exercise their rights to accommodation in the academic workplace. The university administration’s response to the prospect of being seen as having violated my human rights was a confusing mix of trying to put a positive legal spin on their efforts to accommodate my needs, while at the same time proposing future arrangements that would have further violated my human rights. For example, in response to my lawyer’s initial letter outlining the facts of my case, the provost claimed that by releasing me from undergraduate teaching the university had exceeded its legal duty to accommodate my needs. This argument hinged on presenting undergraduate teaching as an essential duty of the job – something my lawyer and I challenged since there are a variety of circumstances under which professors may be released from such teaching. At the same time, the provost proposed a new accommodation arrangement that included a 50 per cent reduction in any future salary increases I would earn. He justified this on the grounds that I had a reduced, as opposed to a simply different, workload. However, as my lawyer and I pointed out, the net effect of such a provision would be to entrench permanent salary discrimination into my accommodation – something that clearly violated Canadian human rights law. Altogether, it took thirteen years, an out-of-court legal settlement, and the intervention of the Canadian Association of University Teachers to get a fair accommodation plan in place. During this time, part of my experience of being constructed as a problematic academic worker meant facing hostility and resentment from colleagues in administrative positions who would have preferred that I remained silent on matters related to accommodation. I vividly recall, for example, a meeting with the acting provost, a senior human resources department staff member, the dean of science, and the director of my home academic unit, as well as a staff member with expertise in equity matters. The meeting occurred nine months after the out-of-court legal settlement had been reached between the university and myself, a delay that arose from the fact that my repeated requests for the acting provost to convene such a meeting were ignored. The meeting was ostensibly about developing a reasonable and fair accommodation plan as the settlement required.

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In practice, however, the acting provost insisted that we only discuss how I would fulfill “some form of undergraduate teaching” as agreed to in the settlement. The equity staff member and I repeatedly suggested ways that this could be done, such as through distance education courses. However, the acting provost’s response to every suggestion we put forward was the same unhelpful comment: “Oh, that will never work.” For the most part, the rest of the attendees sat stone-faced and silent around the table. Finally, after at least an hour of the acting provost dismissing our suggestions, I became angry and tearful. In retrospect, I suspect that the meeting was deliberately conducted in a manner meant to punish and humiliate me for taking legal action and being vocal on disability issues on campus. Unfortunately, such emotionally draining encounters are part of the lived experience of being constructed as a problematic academic working body. Such encounters, I have come to believe, are intended to make someone such as myself feel lesser and even more out of place in academia. Even now, after a new accommodation plan has been put in place, I in some ways remain a problem. For example, not too long ago the director of my home academic unit suggested that if I “could not do the job” (i.e., all the usual duties of a professor) then I should go on disability benefits and just do research. Such acts also convey that I am a lesser academic worker and out of place in the university. However, there are valuable lessons to be drawn from experiences of being a problem in academia. By giving voice to these experiences, we can help strip away the veneer of inclusivity and reveal the ways in which academic institutions continue to marginalize and oppress those who differ from the norm. learning from common and divergent threads in our stories

Our encounters with attitudinal barriers to inclusion in academic workplaces both converge and diverge. In this section, we identify points of similarity and difference, and discuss what we can learn from them. One common thread in our stories is our experiences of being constructed as not disabled enough to be entitled to accommodation. For Keri, this was manifest in attitudes that constructed being in pain as an invalid reason for requesting accommodation. For

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Vera, being constructed as not disabled enough also involved attitudes that directly informed her accommodation requests, such as for an accessible parking spot or access to department events, as unwarranted or even fraudulent. Such responses help to render barriers to access and inclusion invisible, and to construct academic workplaces as “already inclusive enough.” These constructions are seductive because they seem to exonerate those in positions to respond to accommodation requests from responsibility for barriers to inclusion, and focus instead on what is allegedly “wrong” with those making the requests. So, for example, Keri’s request for accommodation due to chronic pain was constructed as inappropriate and Vera’s request for physical access to school events was constructed as unnecessary because she would “get in if she really wanted to.” Such strategies conceal the barriers to inclusion still encountered in academic workplaces and perpetuate victimblaming practices. Another common thread in our narratives is, paradoxically, being constructed as not able enough to remain in academia. For example, Keri’s doctor advised her to leave the university and find a job that did not require her to sit. Vera was encouraged to leave the university if she was unable to perform all the usual duties of a professor. Such pressures to make ourselves absent helped to construct both of us as out of place in the academic workplace. They also help to reinforce notions that the academic workplace is already inclusive enough by depicting our ways of being in academia as “defective” rather than a result of the barriers to inclusion we face. Both of us have had to contend with other people’s emotional reactions to our disclosure of impairment and needs for accommodation. While the nature of those responses differed, they nonetheless made us feel distressed and alienated in academic spaces of life. Keri has had to contend with other people’s amused reactions to learning the nature and bodily location of her pain. Such responses have made her feel excluded and different from other students. Vera has had to contend with hostility and resentment from colleagues who were (and still are) concerned that her accommodation struggles, written accounts of those struggles, and legal action would make themselves or the university “look bad.” This has included hostility over the perception of insufficient gratitude for the limited accommodations that have been made, even though they failed to adequately take her modified workload and chronic illness into account.

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Our stories both diverge and converge with respect to the institutional pathways we have negotiated as we struggle for accommodation and inclusion. Keri initially sought accommodation through student disability services. Unfortunately, she found counsellors unsupportive of her accommodation requests and subsequently sought accommodations on an ad hoc basis with individual professors. Vera did not have the option of using disability services for staff as these did not exist at her institution – and still do not, though the university now has an accommodation policy and disability services for students. Vera’s hidden and unrewarded work, and prolonged struggles for accommodation and inclusion as a chronically ill professor, have diminished her capacity to perform the academic work of research and teaching – something, ironically enough, for which she continues to be penalized in performance assessments. Our encounters with attitudinal barriers to inclusion in academia diverge in terms of the exact way that others constructed us as different and out of place. As a young, attractive, white, blonde-haired female, Keri’s use of different seating in the classroom was read as special treatment for no other reason than who she was – which constructed her as a privileged princess who did not belong. Meanwhile, Vera’s struggles to surmount attitudinal barriers to her inclusion in the academic workplace have unfolded over many years. During these years, the ways in which she was constructed as not fitting into the academic workplace have shifted: initially she was constructed as not fitting into an all-male faculty working environment, and into a department where she was the only radical scholar, and later she was constructed as not fitting in because her mind and body differences led others to position her as a less-than-able, and thereby less worthy, academic. So, while Vera was consistently constructed as a problem for violating normative expectations of professors, the ways in which she did not fit in became more complicated with the onset of chronic illness. moving beyond being a princess and a problem

In this chapter, we have drawn on our personal experiences of being constructed as a princess and a problem in academia, specifically in the Canadian academic workplace. Sharing these autoethnographic accounts allows us to highlight attitudinal barriers and processes of oppression that are at work in academic spaces of life for those who

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do not conform to normative expectations. Such accounts also articulate what it is like to be subjected to attitudinal barriers and oppression within academic environments, showing how, for example, feeling disentitled to needed accommodations goes along with being treated as not disabled enough to deserve them. Such treatment includes encountering dismissive attitudes toward accommodation requests that suggest they are fraudulent, inconvenient, or unnecessary – experiences that fuel feelings of alienation and a sense of being excluded in academia for people living with chronic pain or illnesses. In consideration of our stories, we call for a move toward creating academic environments that do not assign devalued identities to those with chronic illnesses who request workplace accommodations. We do not regard being called a princess for requesting accommodation for chronic pain or being regarded a problem on account of being a chronically ill female academic worker as acceptable. In giving voice to our experiences, we have drawn attention to the ways in which disabled students and workers are devalued in academic spaces of life, and provided a basis for challenging attitudinal barriers. Attitudes and practices that render individuals who need accommodation as out of place in the Canadian university workplace must change in order for academic spaces of life to be more inclusive. Specific strategies might include creating space for students and staff to share their stories of marginalization. It can be useful to give people an opportunity to feel that they are part of a group with a shared history and common goals for social change. Additionally, sharing these stories has the potential to change student and staff attitudes toward disability, pain, and chronic illness, so that the ways individuals are marginalized and oppressed can be acknowledged and thus be more likely to change (a point also made in chapter 5 in this volume around supervisory attitudes toward accommodation). When students and staff who experience impairments such as chronic pain share their stories, it becomes possible to make processes of marginalization in academia more visible and open to contestation.

references

Bilge, Sirma. 2010. “Recent Feminist Outlooks on Intersectionality.” ­Diogenes 57(1): 58–72.

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Bochner, Arthur P., and Carolyn S. Ellis. 2006. “Analyzing Analytic Auto­ ethnography: An Autopsy.” Journal of Contemporary Ethnography 35(4): 429–49. Campbell, Fiona A. Kumari. 2008. “Exploring Internalized Ableism Using Critical Race Theory.” Disability & Society 23(2): 151–62. Chouinard, Vera. 1995/96. ”Like Alice through the Looking Glass: Accommodation in Academia.” Resources for Feminist Research 24(3/4): 3–11. Ellis, Carolyn. 2004. The Ethnographic I: A Methodological Novel about Autoethnography. Oxford, UK: AltaMira Press. Garry, Ann. 2011. “Intersectionality, Metaphors, and the Multiplicity of Gender.” Hypatia 26(4): 826–45. Greenhalgh, Susan. 2001. Under the Medical Gaze: Facts and Fictions of Chronic Pain. Berkeley, CA: University of California Press. Samuels, Ellen. 2003. “My Body, My Closet: Invisible Disability and the Limits of Coming-out Discourse.” glq: A Journal of Lesbian and Gay Studies 9(1–2): 233–55. Valentine, Gill. 2008. “Living with Difference: Reflections on Geographies of Encounter.” Progress in Human Geography 32(3): 323–37. – 2007. ”Theorizing and Researching Intersectionality: A Challenge for Feminist Geography.” The Professional Geographer 59(1): 10–21.

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9 Chronic Illness and the Canadian Knowledge Worker: The Role of the Body and Embodiment in Shaping the Production of Academic Work va l o r i e a . c r o o k s , m i c h e l l e o w e n , a n d sharon-dale stone

Embodied experiences of chronic illness can result in altered lives due to shrinking lifeworlds (Driedger, Crooks, and Bennett 2004; Dyck 1995), constrained daily paths (Driedger and Owen 2008; Wilton 1996), altered social careers and networks (Crooks 2007), and spatial isolation (Imrie 1996; Marris 1996). By embodied, we mean that the chronically ill “body is conceptualized simultaneously both as a natural, physical entity and as produced through cultural, discursive practices” (Pilcher and Whelehan 2004, 9). At the same time, participation in the labour market confers material benefits and assists in identity construction, so that those who manage chronic illnesses often try to maintain employment as they negotiate their altered lives (Beatty 2012; Driedger 2003; Dyck and Jongbloed 2000; Townsend 2011; Walker 2010). If the onset, intensification, or embodiment of chronic illness thwarts or negatively affects such participation, deleterious outcomes may include not only financial loss but also a lessening of self-esteem (Beatty 2012; Nosek, Hughes, et al. 2003; Stone 2003; Walker 2010), loss of work-based social networks (Beatty 2012; Crooks 2007; Walker 2010), and worsened self-perceived health (Boot, Heijmans, et al. 2008; Johnson, ­Yorkston, et al. 2004; Munir, Yarker, et al. 2007).

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To determine ways in which chronically ill workers can maintain the material and identity construction benefits that meaningful involvement in paid labour confers is essential (Crooks, Stone, and Owen 2011). To effectively do so, however, requires developing an understanding of how chronically ill workers experience diverse work responsibilities and workplaces through their experiential accounts. In this chapter, we examine the embodied experiences of a particular group of chronically ill workers in a particular workplace – Canadian academics with multiple sclerosis (MS) – so as to contribute to building such knowledge. MS is a chronic illness characterized by symptoms of pain, fatigue, and neurological impairment (Beatty 2012; Hennessey and Rumrill 2001; Reipert 2004). Here we examine the role the bodies of academics with MS play in shaping the production of their academic work, and thereby offer an embodied perspective on this group of knowledge workers’ production of labour. In taking on this focus we address Dyck and ­Jongbloed’s (2000) call to consider specific institutional environments and labour sectors in order to further our knowledge regarding accommodating MS in the workplace. Academics are knowledge workers who are known for their intellectual outputs (Acker 2003; Jacobs 2004; Crooks, Stone, and Owen 2009). Although these outputs are often attributed solely to their mental acuity, here we contend that it is flawed to think that their bodies are not essential to their knowledge work. In other words, a disembodied view of the production of academic work is an incomplete one. For chronically ill academics, understanding the production of academic work from an embodied perspective is particularly important, given that such workers are likely to face fluctuations in bodily abilities that in turn will impact their knowledge work outputs (Crooks, Stone, and Owen 2009; Crooks, Stone, and Owen 2011; Gold 2003; Moss 2000; Slone 2007). In the remainder of this chapter we draw on the findings of phone interviews conducted with Canadian academics with MS. In the section that follows we offer a brief overview of our study. Following this, we discuss five distinct yet interrelated ways in which participants characterized their bodies, and their subsequent embodiment of MS, that informed their production of knowledge work, namely: (1) the changing body; (2) the fluctuating body; (3) the present body; (4) the absent body; and (5) the accommodated body. To conclude, we articulate the pressing need to create an embodied view

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of a­ cademic work, and knowledge work more generally, in both research and practice. study overview

The overall goal of our study was to examine how Canadian academics negotiate the socio-spatial workplace after developing MS and to consider how barriers and enablers in this particular work environment shape their experiences of producing knowledge work. We aimed to understand how others can support these particular workers in employment-related decisions through effective workplace accommodation policies. We focused on academics with MS because research has repeatedly demonstrated that workers with MS who have higher levels of education are more likely to remain in the workforce (Green, Todd, and Pevalin 2007; Phillips and ­Stuifbergen 2006; Roessler, Rumrill, and Fitzgerald 2004; Smith and Arnett 2005), but has made little attempt to understand why. Our study can thus shed light on this knowledge gap. Furthermore, knowledge workers are an employee group typified by advanced education and occupational prestige. Academics’ work is characteristic of knowledge work in that expectations are high regarding time commitments and productivity, and there is little demarcation between work and leisure time (Acker 2003; Jacobs 2004). Thus, the findings of our study are transferrable to other knowledge work environments, taking into account similarities and differences in context of course. At the same time, there are variations between universities (e.g., geographic location, unionized versus non-­unionized, and teaching/research load) that allow us to probe how differences and similarities between institutional environments impact employment outcomes. Data collection involved conducting phone interviews with three groups of Canadian academics with MS: (1) those working full time; (2) those working part time or in contractual positions; and (3) those who are retired but developed MS before retirement. We identified interviewees a number of ways, including through circulating advertisements to university faculty association offices and advertising in a Canadian faculty newspaper. The interviews typically lasted for about an hour. We used a semi-structured interview guide that probed: (1) background and demographic information, e.g., length

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of time since the onset of MS; (2) experiences with MS, e.g., differences in daily life before and after onset; (3) academic career details, e.g., how academic work affects MS, and vice versa; (4) experiences of the workplace environment, e.g., workplace accommodations sought; and (5) difference, e.g., visible versus invisible symptoms and the role of gender. We undertook our study in two phases. The first phase was a pilot study, wherein we conducted ten interviews in order to test our semistructured guide and recruitment methods. The second phase was the full study. Between these two phases, we interviewed forty-five Canadian academics with MS. All participants self-identified as having MS; and while two were unsure of the type of MS they had, twentyfive reported having relapse remitting, and eighteen reported having either primary or secondary progressive. At the time of the interview, the participants were working at, or had retired from, institutions in nine Canadian provinces. These institutions varied in size from small undergraduate-focused universities to large research-focused ones. Eight of the participants were retired, thirty-one were employed fulltime, and six were contractually employed at a Canadian university. After we reviewed transcripts of the interviews and holding several team meetings, we undertook thematic analysis of the dataset, which involved identifying patterns within and across interviews and drawing connections between these patterns and existing research findings. Through the processes of transcript review and data coding we identified a number of topics ripe for analysis. One of these had to do with the roles the participants’ bodies with MS and their embodiment of work-related roles played in their production of academic work. Although such a focus is not related to the objectives of our study, and so is an exploratory secondary analysis, there was enough discussion of this issue during the interviews to warrant its exploration. In total, we identified five distinct yet interrelated ways in which participants characterized their bodies, and subsequent embodiment of MS, that informed their production of knowledge work. As noted in the introduction above, these characterizations were the: (1) changing body; (2) fluctuating body; (3) present body; (4) absent body; and (5) accommodated body. In the five sections that follow we separately examine these different characterizations, offering verbatim quotations where possible in order to enable participants’ voices to come through in the discussion.

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Almost all participants reported experiencing bodily changes following the onset of their MS. Most commonly, these changes took the form of decreased energy, mental and physical fatigue, vision impairments, and mobility limitations – although not everyone reported experiencing some or all of these most common changes. Nevertheless, participants’ changing bodies affected their abilities to perform their main job responsibilities, which for most crossed the domains of teaching, research, and service (e.g., administrative committee work, reviewing manuscripts and grant proposals). The ways in which their changing bodies affected their work performances varied across these domains as some types of work were more flexible and thus more responsive to accommodating MS symptoms than others. As one participant explained, “academia provides me an opportunity to do different things at different times,” and many participants were able to use this flexibility to arrange their responsibilities in a way that would maximize their energy and work outputs. Participants reported having less flexibility regarding their teaching responsibilities, which their changing bodies heavily affected. For example, a participant explained: “I find that standing and interacting with people for long periods of time, and like my three hour lecture that I’m going to give tonight, that’s very hard on me.” Needing to fight off fatigue during lectures was not an uncommon experience. Many participants enacted strategies to minimize fatigue onset during teaching, based on their sense that fatigue and other bodily symptoms might lessen the quality of their teaching work and thereby negatively affect students. They believed that “students deserve” to get quality, timely outputs (e.g., lectures, assignments, final grades) and wanted to do their best to ensure that their changing bodies did not negatively affect students. The changing body had a different type of impact on participants’ research work relative to the effects on teaching reported above. For example, participants commonly reported that travel heightened and exacerbated bodily symptoms, and several participants discussed decreasing or even eliminating research travel as a way to accommodate their MS. For some, this required changing their research focus to something that could be studied without leaving home. A participant commented: “I worry about taking on big projects or I worry about ... travel. Those are like the big, big things

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that ... I get ­concerned about ... Whereas before I never would have thought about them.” Lessening research travel allowed some participants to continue to embody the role of active researcher by enabling research production while being sensitive to their bodily needs and capacities. t h e f l u c t u at i n g b o d y

A hallmark of MS, as with other chronic illnesses, is unpredictable symptom fluctuation. There are many ways in which these fluctuations in bodily symptoms affected participants’ production of knowledge work. For example, fluctuations lessened many participants’ abilities to engage in long-term planning, as they could never know whether their bodies would be stable at a given point in the future. Interestingly, many participants reported that the ways in which they produced their knowledge work and the toll this took on their bodies resulted in fluctuations in their bodily abilities, which in turn affected their work production. In other words, there was a cyclical interaction between the body, symptom fluctuations, and work outputs. One participant characterized this cycle: “There are times I guess when I’m particularly stressed ... like just not sleeping a lot and just have[ing] a lot going on just in terms of work and it’s a particularly busy time and I’m stressed, I actually will get numbness in my arm.” Another reported: “The fatigue is the most debilitating of all my symptoms and has increased in severity over the years ... Unfortunately my workload at work has become unmanageable due to the symptoms I’m experiencing, which include severe fatigue, shortened attention span, irritability, muscle weakness and pain in my legs, numbness and tingling in my extremities which sometimes affects my fine motor skills ... I also say that these symptoms are aggravated by stress and the stress of work.” A third said: “There’s lots of stress in trying to you know navigate through your degrees, but also through your teaching um so lots of stress, lots of fatigue, lots of me saying well these are things that I’m required to do so I do have to push myself to get my marks in on time ... I think that the level of fatigue resulting from trying to get through all of these requirements has um impacted on my MS.” Each of these three participants linked the stress associated with their knowledge work to symptom fluctuations, and exacerbations specifically. Participants commonly reported this reality, which draws a complex connection between the body and

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the production of knowledge work, particularly in light of the common assumption that knowledge work is solely accomplished with mind labour and does not involve bodily labour. In other words, our participants’ experiences make it clear that mind and body cannot be easily teased apart in knowledge work. the present body

Participants could be understood as speaking to “the present body” when they commented on their MS symptoms that were visible to others, such that their presence in the workspace gave co-workers and others a chance to “read” their bodies. There were risks inherent in having symptoms visible to others. One was that the presence of visible symptoms would necessitate their disclosure of MS to others, whether or not they wanted to undertake such disclosure. Another risk was that co-workers and others might associate bodily difference with inability and therefore judge them to be less than capable of producing knowledge work, as was the case outlined in chapter 8 in this volume. Yet another risk was that visible symptoms in the workspace might simply have brought unwanted attention to themselves and their bodies, and would have required them to answer (often well-intentioned) questions from others. For example, one participant explained an attempt to prevent others from reading her body in unwelcome ways: “I sort of ‘came out of the closet’ [i.e., disclosed MS] when I went on my sabbatical after I got tenure. That’s when I started using a cane and stuff like that – then I started telling people why I was using a cane. So I don’t get asked any more questions. If I slur my speech no one asks me if I’ve been drinking.” Participants’ reported risks of others reading their present bodies were not simply perceived, and they reported actually experiencing such readings because of their chronically ill bodies’ presence in the workspace. Risks emerged when participants’ bodies showed no signs of difference when present in the workspace. Specifically, others in the workplace who knew about their MS diagnosis might doubt its validity. As one said: “I think in the early years ... my main worry was that people were making assumptions about me that there was absolutely no physical or mental or emotional evidence to make those assumptions about. And so I think, I think it was that sort of anger that people were stereotyping or something of that so even though at the time ... there was nothing to stereotype.” Another participant

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commented: “Because they [co-workers] can’t see it, you can’t touch it, you can’t feel it, nobody notices anything different about me, no one would take that [MS] into consideration, and it’s very easy to forget that I have any issues.” While participants wanted to ensure that their work abilities and outputs were not minimized due to MS, they also wanted to ensure that others did not think their MS was gone or never present in the first place when their bodies did not present as chronically ill. the absent body

One of the ways that many participants with ongoing symptoms managed their MS was by choosing to do less administrative committee work (wherein they felt they could not always reliably attend meetings and/or do this work in a timely fashion) and by choosing to work from home more often. Both of these strategies meant that many were increasingly absent from the workspace. Although participants viewed such strategies as useful for enabling the production of knowledge work, they realized that such absence left them “out of sight, out of mind” from their colleagues and other university workers. In other words, regarding the embodiment of the role of productive knowledge worker, there were some challenges associated with being present in the workspace, as discussed in the previous section, but there were also challenges associated with being absent. One such challenge was that others might misunderstand the reasons for such absence. As one participant commented: “I have to be vocal about [having MS and needing to work from home], like if people will talk to me I’ll talk to them about what it is that I need to do to stay well, and what my symptoms are and what that’s like. Because it’s not visible ... the disadvantage is then people wonder why you have to be on a leave if you look fine ... people say are you just staying home with your daughter, ’cause you want to stay at home with your daughter kind of thing.” Physical absence could also lead to a disembodied way of engaging in knowledge work by relying on Internet technologies: “a lot of it [committee meetings, some teaching] I can do from home, including coming in by good video and good audio, controlling cameras at work. It’s sort of kind of an unusual environment for this and so, for example, I often attend ­lectures by having them streamed, research lecture today for example I watched from home.” Such disembodiment may

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reinforce the perception that the production of academic work does not involve the body. t h e a c c o m m o d at e d b o d y

Participants made various formal (i.e., requests through proper administrative channels) and informal (i.e., changes they made on their own with formal approval sought) accommodations in order to continue to produce academic work after they developed MS. We noted above that participants thought teaching responsibilities were the least flexible, and thus the most affected on an ongoing basis by their changing bodies. As such, accommodations were often discussed in relation to teaching tasks. We have discussed these accommodations in detail elsewhere (Crooks, Stone, and Owen 2011) and so provide only a brief overview here. Teaching tasks were accommodated within three domains. The first were strategies undertaken before or after teaching to minimize stress and symptom exacerbation, such as taking rests before and/or after lectures and limiting non-teaching tasks on lecture days. The second were strategies undertaken during lectures, such as lecturing from a sitting position. The third were organizational strategies that dealt with administrative aspects of teaching, such as requesting teaching classrooms close to one’s office and scheduling classes when participants expected to have the fewest bodily symptoms and the highest energy levels. As noted in the previous section, an informal accommodation some participants undertook in relation to service work was to become involved in less committee work. Participants were also especially likely to informally accommodate their research tasks and responsibilities, doing things such as changing field sites, not pursuing new grants, minimizing research travel, and focusing less on primary data collection. As a result of their changed bodies, changed outputs, and views on the relative importance of the production of various kinds of academic labour, many participants altered their career goals: “I’m ... pretty sure that I’m not going to ever be [department] chair. I can’t, basically, because of the disability. I’m not sure that I can handle a job like that and so ... my long-term career path seems to be a little different.” In other words, some participants’ long-term career plans changed because of perceptions about the impact that chronic illness and bodily symptoms had and would continue to have on their production of academic work. Such changes were another way

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in which participants informally worked to ensure their bodies were accommodated. conclusion

In this chapter we have examined the role of the body and the embodiment of the roles associated with the production of a particular kind of knowledge work among Canadian academics with MS. Our findings show that bodies are central to the production of academic work, whether by being present in the workspace (or justifiably absent), enabling quality outputs, or being accommodated in meaningful ways. The findings also illustrate the complex connections between the body and knowledge work. For instance, participants explained that the mental and physical stresses associated with the production of academic work can heighten their bodily symptoms, which may in turn lessen their ability to produce further academic work. The findings we have shared above highlight issues related to both the body and embodiment, and these issues are clearly interrelated. With regard to the body, participants spoke of symptom exacerbation and its impact on their work, the need to accommodate their changing bodies by modifying work tasks (among other strategies), and lessening the movement of their bodies through minimizing travel – a theme that also came up in chapter 6 in this volume. With regard to embodiment, participants’ experiential narratives highlight their concerns about how others read their bodies as an indication of their abilities as academic workers. This, in turn, raises concerns about the social construction of “able” bodies, which is something that has been written about extensively in the critical disability studies literature (see, for example, Charmaz 1995; Marris 1996; Linton 1998; Driedger and Owen 2008; Chouinard, Hall, and Wilton 2010). The findings make it clear that the body is absolutely central to the production of academic work. There are a number of reasons for this. First, some tasks associated with academic work conventionally involve the body, such as lecturing in front of a class. Second, there are expectations and norms related to being physically present in the university workspace that in effect result in others’ engagement with an academic’s body. Moreover, when an academic cannot meet these expectations as a result of symptom exacerbation or some other form

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of bodily difference, there are consequences. Third, some forms of research work necessitate bodily engagement, whether this involves collecting samples in the field or visiting a physical archive. Fourth, and perhaps most striking from the participants’ narratives, when the body is fatigued or not adequately accommodated, the production of academic work is negatively affected. Altogether, these findings suggest that setting up or reinforcing a mind-body dualism in relation to how academic work is produced is likely a flawed projection. While our findings support this conclusion, more research needs to be done to confirm it, and should in particular examine any instances where a mind-body dualism is enabled and also whether or not this non-dualism holds true in the production of knowledge work more broadly. There have been many calls to take the body and embodiment seriously in research on chronic illness (e.g., Bullington 2009; Crooks and Chouinard 2006; Hall 2000; Parr 2004). These calls do not advocate for a biomedical or clinical view of the body, wherein symptom exacerbations might be measured and fatigue onset predicted. Rather, many are couched within a social understanding of issues such as work, illness, the body, and embodiment, and recognize the impossibility of predicting how individuals will experience symptoms of chronic illness across time and space. The findings of our study underscore the importance of addressing these calls in order to ensure that workplace accommodation policies, among other things, are informed by on-the-ground experience. acknowledgements

We are thankful to the participants for giving us their time and sharing their stories. We also thank Victoria Casey for her assistance at various stages in this study. The research in this chapter was funded by a Standard Research Grant from the Social Sciences and Humanities Research Council of Canada.

references

Acker, Sandra. 2003. “The Concerns of Canadian Women Academics: Will Faculty Shortages Make Things Better or Worse?” McGill Journal of Education 38(3): 391–404.

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Beatty, Joy E. 2012. “Career Barriers Experienced by People with Chronic Illness: A U.S. Study.” Employee Responsibilities and Rights Journal 24(2): 91–110. Boot, Cécile R.L., Monique Heijmans, Joost W.J. van der Gulden, and Mieke Rijken. 2008. “The Role of Illness Perceptions in Labor Participation of the Chronically Ill.” International Archives of Occupational and Environmental Health 82(1): 13–20. Bullington, Jennifer. 2009. “Embodiment and Chronic Pain: Implications for Rehabilitation Practice.” Health Care Analysis 17: 100–9. Charmaz, Kathy. 1995. “The Body, Identity, and Self: Adapting to Impairment.” The Sociological Quarterly 36(4): 701–24. Chouinard, Vera, Ed Hall, Robert Wilton, eds. 2010. Towards Enabling Geographies: ‘Disabled’ Bodies and Minds in Society and Space. Farnham, UK: Ashgate Publishers. Crooks, Valorie A. 2007. “Women’s Experiences of Developing Musculo­ skeletal Diseases: Employment Challenges and Policy Recommendations.” Disability & Rehabilitation 29(14): 1,107–16. Crooks, Valorie A., and Vera Chouinard. 2006. “An Embodied Geography of Disablement: Chronically Ill Women’s Struggles for Enabling Places in Spaces of Health Care and Daily Life.” Health & Place 12(3): 345–52. Crooks, Valorie A., Sharon-Dale Stone, and Michelle Owen. 2009. “Multiple Sclerosis and Academic Work: Socio-Spatial Strategies Adopted to Maintain Employment.” Journal of Occupational Science 16(1): 24–30. Crooks, Valorie A., Sharon-Dale Stone, and Michelle Owen. 2011. “Problem-Focused Coping Strategies Used by Canadian Academics with Multiple Sclerosis to Enable University Teaching.” Canadian Journal of Occupational Therapy 78(1): 45–9. Driedger, Diane. 2003. “In Sickness and Employment: Women Living and Working with Chronic Illness.” Resources for Feminist Research 30(1–2): 125–35. Driedger, Diane, and Michelle Owen, eds. 2008. Dissonant Disabilities: Women with Chronic Illnesses Explore Their Lives. Toronto, ON: Women’s Press/Canadian Scholars’ Press. Driedger, S. Michelle, Valorie A. Crooks, and David Bennett. 2004. “Engaging in the Disablement Process over Space and Time: Narratives of Persons with Multiple Sclerosis in Ottawa, Canada.” The Canadian Geographer 48(2): 119–36. Dyck, Isabel. 1995. “Hidden Geographies: The Changing Lifeworlds of Women with Multiple Sclerosis.” Social Science & Medicine 40(3): 307–20.

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Dyck, Isabel, and Lyn Jongbloed. 2000. “Women with Multiple Sclerosis and Employment Issues: A Focus on Social and Institutional Environments.” Canadian Journal of Occupational Therapy 67(5): 337–46. Gold, Gerry. 2003. “Rediscovering Place: Experiences of a Quadriplegic Anthropologist.” The Canadian Geographer 47(4): 467–79. Green, Gill, Jennifer Todd, and David Pevalin. 2007. “Biographical Disruption Associated with Multiple Sclerosis: Using Propensity Scoring to Assess the Impact.” Social Science & Medicine 65(3): 524–35. Hall, Ed. 2000. “‘Blood, Brain and Bones’: Taking the Body Seriously in the Geography of Health and Impairment.” Area 32(1): 21–9. Hennessey, Mary L., and Phillip D. Rumrill. 2001. “Overview of Multiple Sclerosis.” In Multiple Sclerosis: A Guide for Rehabilitation and Health Care Professionals, edited by Phillip D. Rumrill and Mary L. Hennessey, 3–22. Springfield, IL: Charles C. Thomas Publisher. Imrie, Rob. 1996. Disability and the City: International Perspectives. London, UK: Paul Chapman Publishing. Jacobs, Jerry A. 2004. “The Faculty Time Divide.” Sociological Forum 19(1): 3–27. Johnson, Kurt L., Kathryn M. Yorkston, Estelle R. Klasner, Carrie M. Kuehn, Erica Johnson, and Dagmar Amtmann. 2004. “The Cost and Benefits of Employment: A Qualitative Study of Experiences of Individuals with Multiple Sclerosis.” Archives of Physical Medicine and Rehabilitation 85(2): 201–9. Linton, Simi. 1998. Claiming Disability. New York, NY: New York University Press. Marris, Veronica. 1996. Lives Worth Living: Women’s Experience of Chronic Illness. London, UK: Harper Collins. Moss, Pamela. 2000. “Not Quite Abled and Not Quite Disabled: Experiences of Being ‘In Between’ ME and the Academy.” Disability Studies Quarterly 20(3): 287–93. Munir, Fehmidah, Joanna Yarker, Cheryl Haslam, Helen Long, Stavroula Leka, Amanda Griffiths, and Sara Cox. 2007. “Work Factors Related to Psychological and Health-Related Distress among Employees with Chronic Illnesses.” Journal of Occupational Rehabilitation 17(2): ­259–77. Nosek, Margaret A., Rosemary B. Hughes, Nancy Swedlund, Heather B. Taylor, and Paul Swank. 2003. “Self-Esteem and Women with Disabilities.” Social Science & Medicine 56(8): 1,737–47. Parr, Hester. 2004. “Medical Geography: Critical Medical and Health Geography?” Progress in Human Geography 28(2): 246–57.

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Pilcher, Jane, and Imelda Whelehan. 2004. 50 Key Concepts in Gender Studies. London, UK: Sage Publications. Phillips, Lorraine J., and Alexa K. Stuifbergen. 2006. “Predicting Continued Employment in Persons with Multiple Sclerosis.” Journal of Rehabilitation 72(1): 35–43. Reipert, Beverly. 2004. “Multiple Sclerosis: A Short Review of the Disease and its Differences between Men and Women.” jmhg 1(4): 334–40. Roessler, Richard T., Phillip D. Rumrill, and Shawn M. Fitzgerald. 2004. “Predictors of Employment Status for People with Multiple Sclerosis.” Rehabilitation Counseling Bulletin 47(2): 96–103. Slone, Mary Beth. 2007. “Navigating the Academy When Your Ship is Thrown off Course: The Effects of Multiple Sclerosis on One College Professor.” In Disabled Faculty and Staff in a Disabling Society: Multiple Identities in Higher Education, edited by Mary Lee Vance, 269–71. Huntersville, NC: Association on Higher Education and Disability. Smith, Megan M., and Peter A. Arnett. 2005. “Factors Related to Employment Status Changes in Individuals with Multiple Sclerosis.” Multiple Sclerosis 11: 602–9. Stone, Sharon-Dale. 2003. “Workers without Work: Injured Workers and Well-Being.” Journal of Occupational Science 10(1): 7–13. Townsend, Anne. 2011. “Working to Manage Chronic Illness in Daily Life.” Occupational Therapy Now 13(5): 20–2. Walker, Christine C. 2010. “Ruptured Identities: Leaving Work because of Chronic Illness.” International Journal of Health Services 40(4): 629–43. Wilton, Robert. 1996. “Diminishing Worlds: HIV/AIDS and the Geography of Everyday Life.” Health & Place 2(2): 1–17.

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Narrative Preface: Andrea’s Story andrea black

At first you keep telling yourself that you’re just in need of some extra sleep. Then you keep thinking you can’t possibly be this tired all the time for no reason. Then you start to tell yourself it will go away. But it doesn’t. I remember feeling like I had one foot nailed to the floor. I felt like I had been hit by a truck. I felt like I had the flu all the time, every day, every week, every month. How do you go from doing a job, looking after a house, ­taking courses, going shopping, walking the dog, and having a social life, to feeling like you’re on a “fatigue” I.V. drip? How can that happen? I had two car accidents, two years apart. Both were rear-enders. I was a front seat passenger both times. After a severe whiplash with a great deal of pain, I returned to school after several months of recovery. The second whiplash was less severe. However, I began to have severe panic attacks. My doctor treated me for stress for a year. I complained constantly about fatigue and widespread continuous pain. My panic attacks continued, accompanied by back and chest pain that made me think I was having a heart attack. I took painkillers, and medicine to treat muscle spasms and vertigo. Finally my doctor said he had been seeing me a great deal. He said, “You don’t seem stressed to me. I think you have something strange wrong with you.” I have a friend who had been diagnosed with fibromyalgia and I was beginning to suspect I might have the same condition.

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My doctor tested out my trigger points up and down my spine and that was a telling experience. What acute pain! The next diagnosis came from my specialist at a hospital in Toronto. He confirmed that I had fibromyalgia. He agreed to have me finish the last three months of the school year – I was a school teacher at the time – and see him in August. My pain, fatigue, and panic attacks continued. My car-related phobia escalated. I was sensitive to everything: heat, cold, noise, it just went on. I never felt normal. Nobody could see the pain or even the panic attacks. Despite the fatigue, I continued with my teaching duties as before. I went to Mexico for the March break that year and I was never so sick in my life. In August I prepared my classroom for September. School hadn’t even started and I was exhausted. I had spent the summer at home, but felt no better. I never slept well enough to feel rested, and my medication increased my exhaustion. In fact, my sleep test at the hospital did not register enough sleep to give a reading. Near the end of August, I saw my specialist. In his opinion, I had pushed myself too hard for too long, and he advised me to quit working. In a way, that decision was a great relief because I had started to feel like my job was going to kill me. On the other hand, I also had a great feeling of loss – loss of a whole, major part of my life. So how do you live with fibromyalgia? You come to an understanding with yourself. After a while, you realize that it is never going away. Pain and fatigue will be your constant companions. You can take something for pain if you need to, but there’s nothing to take for fatigue. You have some days that are worse, and some that are better. You learn to pace yourself. You can’t do the whole garden in a day, so you learn that a half hour here and there is better than nothing. It is very frustrating to be too tired to do what I want or need to do, including work. Sometimes I have to let things go for another day, or I may need to get help. I have learned to put things in perspective; some things just aren’t that important. You can try things – therapeutic programs, exercises – find out what makes you feel better. Not everything works. I went to a Taichi class specifically for fibromyalgia. It was fun, but it would take me all week to recover, and then it was time for Tai-chi again.

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Now, I force myself to get some activity. It is very easy to give in to not feeling up to anything, but I try to be reasonable about it. For instance, walking around the mall or the dog park for twenty minutes isn’t overdoing it. I think it’s important not to become a professional fibromyalgic. Fibromyalgia has robbed me of a lot, but I go ahead and do what I want. I’m going to be in pain anyway, so I might as well. I’m not going to punish myself or apologize for what I can’t do. I try to know my limits and carry on. Basically, you just learn to live with it – live with it.

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Epilogue s h a r o n - d a l e s t o n e , va l o r i e a . c r o o k s , a n d michelle owen

The narratives and empirical research shared in this book bring attention to the commonalities and differences across diverse experiences of living with, managing, and being challenged by chronic illness in a range of Canadian workplaces. The close focus on the Canadian context allows for an appreciation of the roles place and context play, and the ways in which experience varies even within a single legislative context. Yet, the issues the authors in this volume discuss are relevant for workers with chronic illness far beyond the Canadian context, given the global reach of the capitalist economy, neoliberal agenda, and widespread unemployment. For these reasons, those with chronic illness who live within the context of post-industrial capitalist economies, regardless of geographical location, are likely to face challenges and experiences similar to those reported in this volume. Many will face the same dilemmas regarding disclosure, the same attitudes in the workplace, and the same difficulties with negotiating workplace accommodations. The authors in this collection make it clear that there is much to consider in attempts to understand the diverse experiences of workers with chronic illnesses, yet we find it significant that the one issue addressed in every chapter is workplace accommodation. Whether authors focused on accommodation or discussed it as an aspect of the experiences they reported on, none treated it as a trivial matter or as something that could be taken for granted. Contributors, or those they studied, encountered difficulties as they attempted to secure appropriate accommodations in the Canadian workplace.

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The chapters and narratives show that there is a significant difference between having legislation built around accommodation in principle, and a chronically ill worker being appropriately accommodated in a specific workplace in practice. This difference is a significant cause for concern. A number of issues are apparent when considering the appropriateness and ease of access to accommodations in Canadian workplaces. In particular, this collection highlights the significance of the episodic, unpredictable nature of chronic illness and symptom invisibility; the workplace environment; factors that influence whether those with chronic illness disclose their condition to others in the workplace; attitudes toward chronic illness; and the ways in which chronic illness intersects with other axes of difference, such as age, gender, and immigrant status. Each of these issues serves as domains for much needed future research inquiry. t h e e p i s o d i c n at u r e o f c h r o n i c i l l n e s s a n d s y m p t o m invisibility

More than anything, the experiences of those with chronic illness are conditioned by the reality that symptoms typically come and go, so that individuals may feel well one day and unable to function the next. If these bodily states were apparent to onlookers (in the workplace and beyond), onlookers might offer more understanding and leeway, but because a chronically ill person can appear “fine” or even look “good” while experiencing an exacerbation, onlookers sometimes question accommodation claims. Almost all contributors addressed problems encountered on account of the mostly invisible and episodic nature of impairments that stem from chronic illness, including as these problems relate to accommodation. Someone who asks for accommodation may encounter blatant and hurtful prejudice, such as that Cameron faced (chapter 8) when she was called a princess because she asked for accommodation, or they may encounter passive resistance from supervisors who agree to provide acceptable accommodation but are slow to follow through. Some of the injured workers interviewed by Aversa and Carlan encountered the latter situation (chapter 3). Other contributors discussed how the unpredictable nature of their illnesses left them unsure about whether to ask for accommodation (e.g., “Saanthi” in chapter 6), or issues such as the attitudes of

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supervisors who were not sure how best to accommodate their needs (chapters 4 and 5). the local workplace environment

Clearly, local workplace organizational culture is tremendously important in terms of conditioning experiences of chronic illness. This issue emerged relatively consistently across all of the contributions. Sometimes, as Oldfield (chapter 1) found that women with fibromyalgia reported online, supervisors can appear unsympathetic and unwilling to make allowances for impairment-related difficulties, which makes it impossible for women to continue with that employer; other times, supervisors can seem caring and interested in doing whatever necessary to help the employee keep her job. Similarly, as discussed in chapter 2, youth with chronic illness have vastly different workplace experiences depending on the workplace context and factors such as supervisors’ willingness to provide accommodations. Authors in part II developed sustained analyses of the role played by the local workplace environment vis-à-vis decisions to offer accommodations. As Lysaght and Krupa (chapter 4) pointed out, different organizations have distinct cultures, which leads to considerable variation in employer perspectives and ability to respond to the needs of employees with chronic illness. Kristman, Shaw, and Williams-Whitt (chapter 5) discussed the same ideas with specific reference to the ways in which supervisors manage the return to work experience for injured workers with chronic illness. It is noteworthy that the authors of these chapters grounded their analyses in different literatures, yet came to substantially similar conclusions about the complexity of factors that need to be considered, as well as the centrality of the local environment for conditioning what supervisors can or cannot do to accommodate workers. The case of ­Saanthi presented by Popiel, Porch, and Dolan (chapter 6) allowed us to ponder the ways in which a chronically ill worker might interact with the local workplace environment, and brought into focus the variety of issues and perspectives to consider. We think it is clear that the more we can understand the multitude of factors that come into play when requests for accommodation are made, the more likely it is that we can move closer toward creating an equitable work environment for all.

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disclosure of chronic illness

As we discussed in the introduction of this collection, any worker with a chronic illness needs to decide whether to disclose that illness to co-workers or supervisors, and this decision is not necessarily an easy one. The episodic and largely invisible impairments that typically ensue with chronic illness mean that it is quite possible for someone to work for a very long time without others noticing their difficulties. For workers, the benefits of disclosure must be weighed against the potentially negative consequences that could just as easily be forthcoming. It is not surprising that the issue of disclosure was prominent in all parts of this book. Significantly, though, the contributions showed that the issue of disclosure tends to manifest differently for those who acquire a chronic illness that is not work-related than it does for those who acquire a chronic illness as a result of workplace injury. If those in the latter group seek compensation for their injuries (and not all do), they must become embroiled with the workers’ compensation system and consequently have the decision about disclosure effectively taken from them, as medical personnel then become responsible for communicating with employers about their abilities. Moreover, the affected worker might not know what exactly was communicated about their condition, which can heighten concern and the potential for misunderstanding. Canadian legislation, as noted in many chapters, is quite specific regarding accommodating the needs of workers with chronic illness and disability in the workplace, as workers are required only to identify what types of accommodations they need, but not the condition(s) that gives rise to the need for accommodation or whether the condition is being treated by medical professionals. Numerous contributors noted this situation, and underlined that workers should not feel that they must disclose their diagnosis or information regarding treatment in order to ask for accommodations. Indeed, Kristman, Shaw, and Williams-Whitt (chapter 5) interviewed supervisors who were aware of the legislation and happy to arrange accommodations without requiring diagnoses disclosure. Other supervisors, however, felt that knowing more about a worker’s diagnosis and treatment would help them provide appropriate accommodations. Clearly, the issue of disclosure is controversial for both employees and employers.

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Sharon-Dale Stone, Valorie A. Crooks, and Michelle Owen at t i t u d e s t o w a r d c h r o n i c i l l n e s s

Others’ attitudes toward chronic illness are important for conditioning experiences in the Canadian workplace. As might be expected, many people with chronic illness are concerned about the attitudes of others and fear stigmatization on account of being seen as asking for special yet undeserved privileges. Some contributors, however, were also willing to go further by discussing their own internalization of negative attitudes toward chronic illness, and the ways in which those attitudes prevented them from seeking the help or accommodations they needed to fully participate in the workplace. Most notably, Adam Gilgoff touched on this issue in his narrative in part I, when he noted that his own expectations about what is possible had changed. Similarly, as Crooks, Owen, and Stone (chapter 9) found regarding academics with multiple sclerosis, some changed their expectations about career progression based on negative perceptions of what they would be capable of in the future. As well, Cameron (chapter 8) openly confronts her own internalized oppression, and notes that one consequence is that she has not always been forthright in asking for what she needs. The issue of public attitudes toward chronic illness is one that merits more and sustained attention. There are long-standing debates amongst social justice advocates regarding the relative importance of changing attitudes at the grassroots level (from the bottom up) versus changing legislation so that attitudes will follow suit (from the top down). The debate certainly is not about to be resolved in this volume. It is, however, important to recognize the central role attitudes play in conditioning experiences of chronic illness in the Canadian workplace. It is only when we have a better grasp of attitudes – what they are; where they come from; and when, where, and how they manifest – that we will be in a stronger position to address them and sow the seeds of progressive change. axes of difference

A final theme we want to draw attention to relates to the ways in which chronic illness intersects with other axes of difference, such as gender, age, and immigrant status, to create unique workplace experiences. Accordingly, there is no such thing as “the” chronic illness experience. Rather, there are multiple experiences. Yet, we can

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begin to draw broad contours for differing experiences when we attend to markers of social location. Gender, of course, is an exceptionally important factor that conditions experiences of chronic illness in all environments. First, we must consider the fact that women are more likely to be diagnosed with chronic illnesses such as the auto-immune disorders of fibromyalgia, arthritis, or multiple sclerosis, while men are more likely to develop a chronic illness such as a musculoskeletal disorder on account of workplace injury – but it is important to recognize that men also acquire auto-immune disorders for unknown reasons, while women also acquire chronic illnesses on account of workplace injury. For these reasons alone, the experience of chronic illness is gendered. Beyond this, however, there is evidence that women and men tend to respond to the consequences of chronic illness differently. While Syed (chapter 7) explicitly addressed gender in relation to chronically ill immigrant workers, and Cameron and Chouinard (chapter 8) do so in relation to their experiences as Canadian academics, a careful reading of findings in other chapters using a gendered lens also shows other meaningful gendered differences. For example, Aversa and Carlan (chapter 3) reported differences in how women and men responded to workplace injury. Moreover, as ­Oldfield pointed out (chapter 1), “women are inequitably responsible for domestic work,” and so outside responsibilities will necessarily condition their workplace experiences. Age is another marker of social location, and in this volume ­Versnel and Hutchinson (chapter 2) explicitly addressed the difference age makes with a focus on youth with chronic illness. They made the important point that there is a connection between preparedness to enter the workforce and ability to successfully maintain employment. We can expand on this point to note that, relative to chronically ill youth who lack adequate preparation to advocate for themselves in the workforce, those who acquire chronic illness as adults and who already have experience in paid employment are privileged to be able to draw on previous experiences to help them navigate the workplace. Age is also implicitly identified as important in narratives such as Gilgoff’s, where he not only drew attention to expectations based on his appearance as “an otherwise fit and healthy young male,” but also noted how he has changed his own expectations about his life trajectory on account of his injury at a relatively young age. Devaney’s narrative also drew attention to her

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age, and she noted how her experiences changed as she moved into her thirties. Altogether, these narratives as well as chapter 2, in comparison with other chapters that focused on older workers, underscore that the age at which chronic illness is acquired affects the workplace experience. A third marker of social location that makes a tremendous difference when negotiating the workplace with chronic illness is immigrant status. Syed (chapter 7) explicitly addressed the situations of immigrants with chronic illness, where she made an important argument for not putting all immigrants into a single category and assuming that they are similar. Immigrants come to Canada from all over the world and are extremely diverse in terms of cultural background and preparedness to negotiate the Canadian workplace. Not all immigrants are members of a visible minority; some are able to integrate into cultural enclaves, while others are unable to find a supportive network to help them negotiate life in Canada. Namusa, whose experience Aversa and Carlan (chapter 3) discussed, apparently faced the latter situation. Other chapters did not explicitly identify whether research participants were immigrants, but given the importance of immigrant labour in Canada, it would not be surprising to learn that there were unidentified immigrants among them. conclusion

Each narrative and chapter in this volume makes a unique contribution toward furthering our understanding of chronic illness in the contemporary workplace. At the same time, it is striking to find that across different social locations, individuals with chronic illness must contend with broadly similar issues. Difficulties with acquiring needed accommodations is a prominent concern for almost all, regardless of gender, age, immigrant status, or whether chronic illness was acquired as a result of workplace injury. This state of affairs is remarkable in a country with human rights legislation that purportedly requires that impairment-related needs be accommodated in the workplace. Obviously, there is still considerable work to be done in order to create an equitable, welcoming workplace environment for those with chronic illness. We believe that research has an important role in highlighting, describing, and demonstrating what constitutes such a welcoming workplace.

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Contributors

Theresa Aversa is a health and safety officer at the Ontario Public Service Employees Union (OPSEU). Theresa has completed a specialist BA in employment relations at University of Toronto and is pursuing a master’s degree in McMaster University’s Work and Society program. Her role at OPSEU includes providing health and safety assistance and advice to OPSEU’s 130,000 members and working with other stakeholders to improve workplace health and safety in Ontario. Aversa spearheaded the development of the 2012 Mental Injury Tool Kit, a resource tool formulated by unions, workers, and organizations to identify and address organizational factors that may cause or contribute to mental distress for workers. Andrea Black is a retired elementary school teacher who lives in Brampton, Ontario. Several years prior to retirement she developed fibromyalgia, after which she took an extended medical leave from work. Keri Cameron is a PhD candidate in the School of Geography and Earth Sciences at McMaster University. Her teaching and research focuses on geographies of disability and illness. Nicolette Carlan is a PhD candidate and project coordinator at the University of Waterloo who wrote her dissertation on the path from science to workplace change. She holds an MES from York University and an MA in sciology from the University of Windsor. She has published with the research team and independently about the

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relationship between work organization, specifically lean production and occupational health. Previously she chaired the Ontario Occupational Disease Panel, was a vice-chair at the Ontario Workplace Safety and Insurance Tribunal, and was the executive director of the Occupational Health Clinics for Ontario Workers. Vera Chouinard is a professor in the School of Geography and Earth Sciences at McMaster University. Her research focuses on disabled women’s struggles for inclusion and well-being as well as the role of gender, class, and other social differences in processes of empowerment and marginalization in society and space. She is currently involved in research on disabled women’s and men’s lives in the global South, the impacts of economic restructuring on diverse women’s experiences in northern Canadian communities, and diversity issues in the Occupy movement. Valorie A. Crooks is an associate professor in the Department of Geography at Simon Fraser University (Burnaby, British Columbia). She is also a scholar of the Michael Smith Foundation for Health Research. Trained as a health geographer, she examines space- and place-based issues as they relate to health and health care. She has an established background in studying the lived experience of chronic illness from a critical disability studies perspective. Julie Devaney is the author and performer of the critically acclaimed show, educational workshop series, and book, My Leaky Body. Quill and Quire named My Leaky Body one of the top five non-fiction books of 2012. Her writing has appeared in the Globe and Mail, Toronto Life, and numerous anthologies. Julie has been profiled on CBC’s White Coat, Black Art and the Current, as well as in Chatelaine and the Toronto Star. She is co-editor of mess: The Hospital Anthology, forthcoming in early 2014. Le-Ann Dolan is the director of programs with the Canadian Working Group on HIV and Rehabilitation. Adam Gilgoff has undergone several successful medical treatments for his injury since writing his piece for this collection. Following the first round of treatment, Gilgoff moved to San Francisco and took up both programming and rock climbing – unimaginable

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only a few months before. Currently he spends his time writing code and staying active while exploring Northern California. Nancy L. Hutchinson is a professor in the Faculty of Education at Queen’s University. Nancy conducts research on inclusion of individuals with disabilities in many contexts including workplaces, cooperative education programs, and classrooms. She has published textbooks and casebooks that are used in teacher education courses across Canada to prepare teachers to work in inclusive classrooms. Hutchinson and Joan J. Versnel began working together in 2000. Vicki L. Kristman is an assistant professor in the Department of Health Sciences at Lakehead University. Dr Kristman is an injury epidemiologist with expertise in epidemiologic methodology and analysis pertaining to work- and sport- related injury and disability. She was a recipient of a CIHR fellowship to study return-to-work and sustained employment after motor vehicle collision and is an alumnus of the CIHR Work Disability Prevention Strategic Training Program. Terry Krupa is a professor in the School of Rehabilitation Therapy at Queen’s University. She holds cross-appointments in the Department of Psychiatry and the School of Nursing. Her scholarly interests focus on approaches to enable the full community participation and activity health of people who experience significant disability. She has a particular focus on employment-related initiatives and mental health related disabilities. Rosemary Lysaght is an associate professor in the School of Rehabilitation Therapy at Queen’s University in Kingston, Ontario. Her professional expertise is in the area of industrial rehabilitation, assistive technologies, community mobility, and program evaluation. Her primary research focus relates to work participation and social inclusion of people in marginalized groups. Margaret Oldfield is a PhD candidate in the Department of Rehabilitation Science at the University of Toronto. After being diagnosed with fibromyalgia, she attended many rehabilitation programs where work was not mentioned. Through research early in her doctorate, she found that fibromyalgia was generally portrayed

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as incompatible with work, even though almost half of women with the condition are working. This finding seeded her thesis research: an examination of how women with fibromyalgia stay in the workforce. Michelle Owen is an associate professor in the Women’s and Gender Studies Department and coordinator of the Disability Studies Program at the University of Winnipeg. Her research focuses on the intersection of gender and chronic illness/disability. She has written about disability in Canadian families and the impact of violence on girls and young women with disabilities. In 2008 she co-edited Dissonant Disabilities: Women with Chronic Illnesses Explore Their Lives (Toronto: CSPI/Women’s Press). She is a recipient of The Council of Canadians with Disabilities and DisAbled Women Canada’s National Award. Melissa Popiel has worked in the field of rehabilitation in several areas including mental health and has also been involved in social policy research related to poverty issues. At the time of writing this article, Popiel was the coordinator of HIV and Episodic Disabilities at the Canadian Working Group on HIV and Rehabilitation. She is currently a PhD student in the Faculty of Social Work at Wilfrid ­Laurier University where she is pursuing research in the area of episodic disability and employment. Wendy Porch was the Disability Specialist and Education Coordinator at CWGHR at the time of her contribution to this volume. Before she joined CWGHR in 2011, Porch was a research fellow in the Accessibility in Educational Media group at the Open University UK. Prior to this, she was a project coordinator at the Adaptive Technology Resource Centre at the University of Toronto. Porch has a master’s of education in counselling psychology. William S. Shaw is a principal research scientist at the L ­ iberty Mutual Research Institute for Safety (Hopkinton, MA) and an instructor at the University of Massachusetts Medical School (Worcester, MA). Dr Shaw is a clinical psychologist with a research focus on improving return-to-work outcomes for work-related musculo­skeletal conditions through the integration of clinical and

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workplace perspectives. He has written and lectured extensively on occupational medicine, work-related musculoskeletal conditions, and return to work, and has authored more than eighty journal publications and book chapters in the areas of pain, work disability, and occupational health and safety. Corinne Stevens is an Aboriginal woman who lives in Northern Saskatchewan. She lives her life according to the Cree traditional teachings where a person working as a therapist is seen as a helper who walks alongside the people she works with. In this way of working, one’s life experience is a vital piece of doing helping work. Stevens often shares her experience of living with chronic pain with the people she works with as a way of helping them to move forward in their lives. Sharon-Dale Stone is a professor of sociology at Lakehead University where she teaches and researches in the areas of disability studies, workplace injury, and critical gerontology. She is the author of A Change of Plans: Women’s Stories of Hemorrhagic Stroke (Sumach Press, 2007). Since the 1980s she has worked with community groups to raise awareness about chronic illness and disability and to advocate for inclusive and respectful social policy. Iffath U.B. Syed is a doctoral candidate at York University’s Graduate Program in Health at the School of Health Policy and Management. She holds an honors bachelor of science degree specializing in human biology from the University of Toronto. She has also completed a master’s of public health degree specializing in occupational health, the collaborative program in environment and health, and the master’s global health focus, also at the University of Toronto. Joan J. Versnel is an associate professor in the School of Occupational Therapy at Dalhousie University. Versnel conducts research with families with adolescents and young adults with chronic illness and childhood onset disability. Specifically, she is interested in how responsibility for decision-making and shifting interdependence around healthcare management is negotiated within families. She has been working with Nancy L. Hutchinson since 2000.

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Kelly Williams-Whitt is an associate professor of human resources and labour relations in the Faculty of Management at the University of Lethbridge. Dr Williams-Whitt has conducted the majority of her research in the area of RTW and disability accommodation and has published a number of books, book chapters, and peer-reviewed journal articles on this subject. She also sits on the editorial board of the Journal of Occupational Rehabilitation and is the president of the Canadian Industrial Relations Association. She has an arbitration and mediation practice and frequently works with the parties when conflict arises during the RTW process.

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ableism, 178, 179, 180, 184, 205; ableist encounters, 185–6, 191 academia, 89–90, 177–94, ­196–206; accommodation ­policies, 198; disability services, 181, 182, 193; embodiment in academic work, 196–8, 205, 206 Accessibility for Ontarians with Disabilities Act (AODA), 144 accommodation. See workplace accommodation age and chronic illness, 3–4, 6, 13, 31, 51–65, 114, 124, 130, 221–2; adolescence and early adulthood, 51, 54, 55, 63, 64 aging workforce, 121, 122 arthritis, 5, 6, 40, 62, 138, 147, 180, 185, 187, 189, 221 Arthritis Society, The, 6, 35, 36, 40, 41 attitudes, impact of, 16–17, 44, 95, 98, 105–6, 108, 120–1, 180, 182, 185–8, 192–4, 217, 220; coworkers’, 9–10, 33, 80–2, 97–8 124–5, 202–3. See also ableism; stigma

bipolar disorder, 187. See also depression Campbell, Fiona, 179 Canadian Community Health Survey (CCHS), 6 Canadian Human Rights Act (CHRA). See human rights legislation Canadian Working Group on HIV and Rehabilitation, The (CWGHR), 139, 142, 143 cancer, 5, 15, 52, 58, 62, 74, 99, 114, 115, 162 cardiovascular disease, 162 carpal tunnel syndrome, 5, 74, 123, 164 chronic fatigue syndrome, 5, 10. See also myalgic encephalo­ myeletis (ME) chronic illness: defined 4–6; disclosure of status, 8–12, 34, 41, 63, 97, 121, 140–2, 145–8, 183, 192, 202, 219; distinguished from disability, 5, 14; episodic/unpredictable nature of, 3, 4, 7, 39, 96, 101, 138–9, 145, 146–7, 200–3;

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financial consequences of, 72, 75, 78, 101, 164 Citizenship and Immigration Canada (CIC), 161; policies related to chronic disease or disability, 162 contingent workers. See precarious employment Cree, 159–60 Crohn’s disease, 52, 59 depression, 5, 14, 99, 126, 142, 187 diabetes, 5, 52, 59, 62 diagnosis, searching for, 76, 89, 213–14 disability: defined, 5, 114; distinguished from chronic illness, 3, 5, 14; insurance benefits, 101, 103, 146–7, 180, 188, 189; and labour force participation, 11, 13, 31, 43, 53, 138; management of return to work, 100, 115, 122–3, 134; pension, 33, 39–40, 45, 103; studies, 3, 5, 205. See also workers’ compensation discrimination, 9–11, 42, 44, 102, 103, 105, 121, 163, 164, 166, 177, 179, 188–90. See also ableism domestic work, unpaid, 34, 41, 165 economic context, 7, 8, 12–14, 60, 104–6, 149, 153, 161, 163–4, 216, 224 embodiment, 196, 197; the changing body, 199, 200–6 Employee Assistance Program, 150 employee responsibilities, 40–2, 96, 150 employer hiring practices: recommendations for equitable hiring

process, 142–9; worker appearance, 106; workers with accommodation needs, 92, 104–5, 107 employer/supervisor perspectives, 12, 77, 80, 90, 91–109, 114–34, 142–3, 148, 218 employer responsibilities, 40, 42–3, 94, 102; in negotiating accommodations, 151 employment: advantages of, 32, 142; security of, 10. See also precarious employment Employment Accessibility Standard, 144 Episodic Disability Employment Network (EDEN), 142 fatigue, 7, 9, 10, 12, 36, 39, 96, 101, 197, 200–1, 213–14 fibromyalgia (FM), 6, 31–45, 124, 213–15, 221 FM-CFS Canada, 34, 36, 38–9, 42, 43 gender and chronic illness, 6–7, 14, 15, 31–45, 81, 164–5, 169, 177–94, 221. See also domestic work healthy immigrant effect, 165 human resources (HR) department, significance of, 100, 127–8, 132, 139, 148, 189 human rights, 11, 42, 43–4, 100, 148, 189–90; legislation, 40, 44, 77, 93–4, 102–3, 121, 131, 142, 149, 177, 190, 222 immigrant workers, 13, 15, 73–4, 161–71, 222

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injured workers, 7, 71–83, 114–34, 167, 169 invisible impairment, 4, 9, 31, 56, 71, 72, 76, 80–2, 106, 124, ­178–94, 202–3, 217. See also arthritis; chronic fatigue syndrome; fibromyalgia; mental health; musculoskeletal disorders mental health, 6, 7, 8–10, 15, 96, 98, 101, 105–6, 108, 114, 115, 126, 138, 147–9, 163, 167–8, 187; panic attacks, 213–14. See also depression Multiple Sclerosis (MS), 5–7, 138, 196–206, 220, 221 musculoskeletal disorders (MSDs), 14–5, 71–6, 82–3, 114–15, 162, 164–5, 168, 221. See also carpal tunnel syndrome; fibromyalgia myalgic encephalomyelitis, 5, 6, 49. See also chronic fatigue ­syndrome National ME/FM Action Network (NME/FMAN), 34, 36, 39 occupational health specialists, 115, 118, 120, 124, 126, 128, 132, 133, 150, 151. See also disability (management of return to work) occupational injury. See workrelated injury Ontario Human Rights Code. See human rights legislation Ontario Network of Injured ­Workers, 72, 75 pain, 6, 7, 9, 10, 14, 15, 18, 29, 31–3, 35–9, 72, 74, 82, 101, 107, 115, 125, 129–30, 140, 145, 146, 165, 167, 177, 179–82,

184, 188, 191, 192, 194; coping with, 37–9, 74, 76, 78, 83, 159–60, 164 Participation and Activity Limitation Survey (PALS), 6, 10, 91, 99, 105 part-time employment, 41, 54, 60–1, 101, 151, 164 precarious employment, 13–15, 71, 163–4. See also part-time employment privacy of health information, 80, 97, 121–2, 141; 148, 149, 183, 219. See also chronic illness (disclosure of status) repetitive strain injury. See musculoskeletal disorders self-care/self-management, 33, 37–8, 40–1, 43, 44, 96. See also youth self-identity, 7, 9, 32, 61, 83, 98, 163, 178, 179, 183, 189, 196, 197 social exclusion/isolation, 7, 54, 60, 168, 185, 192, 194 Statistics Canada, 3, 11, 13, 14, 31, 43, 53, 107, 108; 138, 162. See also Canadian Community Health Survey (CCHS); Participation and Activity Limitation Survey (PALS) stigma, 12, 82, 97, 98, 105–6, 143, 147, 183, 187, 220. See also chronic illness (disclosure of status) unions, role of, 12, 41, 72, 74–5, 77–80, 83, 100–1, 103, 115, 150, 198

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vocational rehabilitation, 133–4 women. See gender work-related injury, 159, 162, ­166–7, 171. See also injured workers; musculoskeletal ­disorders workers’ compensation, 71, 72; 74–82, 169–70, 219 workplace accommodation: as process, 93–4; cost of, 11, 107–8; employer recommendations, 149–52; negotiating accommodations, 33–4, 40–2, 44, 75, 80, 147–9, 166, 169, 177–94; types of, 12, 33, 40, 92, 96, 107–8, 150–1. See also employer perspectives; human rights; injured workers; youth workplace culture/environment, 102, 120–1, 143, 151, 190, 191, 218

workplace relationships, 10–11, 41, 80–2, 89–90, 97–8, 102, 120, 127, 144, 177–94; loss of, 33, 196; with co-workers, 41, 72, 80–2, 98, 102, 124–5. See also attitudes, impact of Workplace Safety and Insurance Board (WSIB). See workers’ compensation youth, 29–30, 51–65, 170, 221; Canadian employment context, 53–4; self-management of chronic illness, 52, 56–9, 61–4; part-time employment, 60–1; work-based learning, 52, 55–6, 58–60