Persons with invisible disabilities and workplace accommodation: Findings from a scoping literature review

1 Introduction

As populations age in industrial countries, invisible disabilities become increasingly prevalent and more actual and potential workers will experience a variety of so-called hidden impairments. As many as 40% of persons with disabilities have invisible impairments according to an international study (Matthews & Harrington, 2000). Invisible disability is additionally important because of its contested nature as a legitimate condition and diagnosis, which raises the issue of disclosing one’s disability in the workplace. It intersects between personal lives and social worlds of cultural attitudes, public policies, labour markets and workplace practices.

This article presents a literature review of literature on the accommodation of persons with hidden or invisible disabilities in workplaces of gainful employment. The objectives of this review are to discuss the nature of invisible disabilities; and to identify a range of available accommodations for persons with invisible disabilities to support their labour force participation.

The article is organized as follows. Section 2 describes the methodological approach, scoping review and conceptual mapping, which underpins the findings and discussion. Section 3 reports on the conceptual mapping, and outlines basic conceptions of disability, including the interrelated terms of episodic and invisible disability. Section 4 looks at the implications of invisible disabilities along with the related practices associated with invisible disabilities of passing, covering and disclosing. Disadvantages and advantages of disability disclosure in a work setting are also identified. Section 5 examines workplace accommodation for people with invisible disabilities. Section 6 offers conclusions and summarizes key findings.

2 Methods

As a methodological approach, this article uses a scoping review and conceptual mapping. This approach involves the analysis and synthesis of a range of research material in order “to provide greater conceptual clarity about a specific topic of field of evidence” (Davis, Drey, & Gould, 2009: 1386). No mere preliminary step in a research project, this is a fundamental activity in its own right, especially on an emergent topic. Understanding the language or terminology used in a field of research or in public policy and practice is an essential task. As Rumrill, Fitzgerald and Merchant explain the value of conceptual mapping: “If a researcher is unfamiliar with the terms used to identify key concepts in research domains he or she is not likely to uncover all the literature on a topic. Furthermore, when locating literature in research databases associated with different disciplines, one must be familiar with differences in the terminology used across disciplines to find all the relevant research on a topic that might cross disciplines” (2010: 402).

The issue of invisible disability, like the phenomenon itself, exists at the margins of various fields of inquiry and practice. Literature on invisible disability presents a relatively diverse and diffuse knowledge base, spanning several decades and several disciplines. What are the conceptual terms and boundaries of invisible disability in the literature? How do social science and health researchers, disability activists, and government agencies talk about invisible disability? How does invisible invisibility relate to visible disability? The aim of this article, therefore, is to provide a conceptual interpretation of the topic of the workplace accommodation of persons with invisible disabilities. Specific objectives are to identify the nature and range of invisible disabilities in the literature; identify key issues of social processes associated with invisible disability in workplace and employment; and inform future research studies, policy development work, and workplace practices.

In terms of disciplinary scope, literature surveyed is from health and social policy fields and so online medical and social science databases were searched. Electronic sources included JStor, Medline, and Google Scholar. Key words used in the search, singly and in combinations, included hidden, non-apparent, non-evident, non-disclosed, invisible, disclosing, coming-out, impairment, condition, disability, handicap, illness, and stigma. In terms of national jurisdictions, literature reviewed comes from a select number of countries, Canada, Britain, Ireland and the United States. The search covered literature published or produced in English over the period from 2000 to 2015, with the inclusion of notable studies produced earlier which related to the main research questions. Reviewing the social science and medical literatures yielded a mixture of personal stories and lived experiences; research findings; conceptual and theoretical approaches; tool kits and tips on accommodation; and recommendations for making workplaces more accommodating. Key issues concern the implications of disabilities being hidden for general public understanding; and disclosure by an applicant or employee within a context of myriad advantages and disadvantages.

In regards to limitations, the article purposefully does not provide an exhaustive review of the literature on invisible disability and employment. In a similar way, the article does not give an in-depth cross-national analysis of how businesses in the United States, Canada, and the United Kingdom, for example, interpret and navigate cultural and legal concepts of invisible disability. To be sure, these are fascinating issues that could inform future empirical research and policy discussions. The nature of a scoping review is more akin to a reconnaissance, generating a broad conceptual frame of reference and an overview of the evidence (Davis, Drey & Gould, 2009).

3 Disability meanings: A conceptual mapping

From a standard international perspective, disability is the relationship between body structures and functions, daily activities and social participation, recognizing the role of environmental factors in influencing these relationships. Persons with disabilities are typically defined as individuals who experience or report difficulties with everyday living or who have a physical or mental condition or health problem that reduces the amount or kind of activities they can do.

Not all disabilities, whether visible or invisible, result in activity limitations in the workplace. Then again, some impairment does affect work capacity and may require job modifications or other general workplace accommodations. The effects can include the type of occupation, the place of work, the amount of work hours a person can do, advancement opportunities and access to work-related training (Williams, 2006). A person’s hidden impairment may not be the most critical fact about the person’s employability; it may be that they are a single parent with young children or that they are multilingual or are a newcomer to the country. That interplay of social and personal factors, however, takes us beyond the scope of this inquiry.

Based on the scoping review of literature, several key terms are in use to describe non-apparent disabilities. The main terms in current usage are episodic disabilities, invisible disabilities, and hidden impairment or hidden disability. Another, more recent term that applies to this topic is psychosocial disability. As an exercise in conceptual mapping, the following discussion clarifies the meaning of and interrelation among these terms as well as indicating who is using specific terms.

4 Implications and practices

As noted in different kinds of literature, disabilities not easily seen or readily evident to other people raise issues, regarding the presentation and negotiation of everyday self (Goffman, 1959 and 1963; Prodinger et al., 2014), managing interactions in workplaces (Church et al., 2008; Clair et al., 2005; Rapley et al., 2010) and related strategies of information management about a hidden impairment (for example, Troster, 1997). These issues are examined in terms of a series of related practices; specifically, a person with an invisible disability passing or covering as non-disabled, of disclosing a hidden impairment and the issue of accommodation in the workplace.

Passing refers to when a person with a significant disability succeeds in appearing to others to be “normal” or non-disabled, by keeping undisclosed information about their impairment or health condition and thus create “a presumption of normalcy” (Devlin & Pothier, 2006: 15; Titchkosky, 2002: 72–79). Goffman suggested that “because of the great rewards in being considered normal, almost all persons who are in a position to pass will do so on some occasion by intent” (1963: 74). An ethnographic account of women diagnosed with rheumatoid arthritis illuminates how the women spent time and energy keeping their condition invisible, negotiating a “disability pass” (Prodinger et al., 2014). A national survey of 1,245 people with disabilities in Canada found that 45 percent of all respondents believe that employers are reluctant to hire people with disabilities (Canadian Abilities Foundation, 2004: 6). Research on disability in the United States also highlights the practice of passing as able-bodied or sane (Brune & Wilson, 2013).

If a disability is not known by an employer, if the employer is reasonably not aware of a health condition, then the duty to accommodate is uncertain or non-existent. Remaining invisible, places the onus on the individual to manage the impression of being healthy and capable; making whatever adjustments are needed to meet their needs that arise from their impairment; accepting the workplace as is rather than asking for reasonable accommodations from the employer. On the other hand, research by Hazer and Bedell concludes that “requesting reasonable accommodation seems to result in negative consequences for job applicants with disabilities who choose to ask before a job offer is tendered. The consequence demonstrated here was that these candidates received lower employment suitability ratings than did applicants not seeking accommodation” (2000, p. 1217).

Covering involves efforts by a person with a less than obvious disability to keep the impairment from looming large in everyday interactions. This can, for example, involve presenting the symptoms of their condition as signs of another less stigmatizing attribute, or, using a term such as epilepsy to describe one’s condition rather than a more negatively regarded term such as seizure disorder. Lingsom (2008) notes that covering as a concept and a practice is largely unmapped in the field of disability research, although there are pockets of analysis (Joachim & Acorn, 2000a; Myers, 2004). In an act of covering, the person with a disability tries “to blend in as much as possible, trying to downplay the significance of the disability” (Devlin & Pothier, 2006: 16). The aim is to make it easier on both the person with the disability by avoiding stigma and to ease matters for those in the know by getting along with others (Goffman, 1963). As Lonardi explains, “a person could decide to differentiate the risk [of disclosing their impairment]. In that case, he/she could divide his/her daily world into segments and decide what strategy to adopt and with whom. With family members, for example, patients could be totally sincere, and this could also happen with close friends, while the secret could also be kept with others” (2007, p. 1626). As with passing, the practice of covering conveys select information about the employee and likely minimizes the prospects for reasonable accommodations in the workplace.

While covering may be viewed as a form of selective disclosure, disclosing refers to making an invisible disability visible in the context of employment. This making known can involve telling of one’s disability to an employer, supervisor or manager, co-workers, human resource staff, union representative and possibly clients or customers. As a social practice in the liberal democracies surveyed for this scoping review, disclosing relates to human rights. The right not to disclose a disability and the right to decide when and to whom to divulge that one has a disability rests on the fundamental principles of self-determination, autonomy to self-identity and consent; principles that also are key goals of modern disability movements in Canada, the United States and beyond. As Wilton explains: “disclosure is of central concern in legislation covering accommodation. In an immediate sense, workers are responsible for bringing their needs to the attention of the accommodation provider. This does not mean that they have to disclose the specifics of their impairment to an employer, as the latter does not generally have the right to know what the disability is. Workers may present documentation indicating a need for a specific accommodation (e.g., a doctor’s letter) without identifying the nature of their impairment. Where a condition is visible or otherwise evident, employers may be immediately aware of a worker’s impairment, although this does not necessarily mean they know what it is. Where a condition is non-evident, the issue of disclosure can be more complex” (2006, p. 26).

Given the negative attitudes, stereotyping and ignorance surrounding invisible disabilities, there are real risks to the individual to disclose their hidden impairment. A substantial body of literature on various types of conditions and impairments considers this predicament of disclosure. One study refers to it as a communicative dilemma facing, in that case, people with Chronic Fatigue Syndrome. “If they do not express their experience, there will be no confirmation of it. However, in communicating their experience, they run a risk of being called into question” (Bülow, 2008, p. 137). This calling into question may involve a trivialization or outright rejection of their condition, treating it as a contested illness. With disclosing comes a shift in the person’s self-image and a shift in others’ conception of the person. In this way, disclosing can be an act of social action aimed at cultural change. An academic who lives with dyslexia is almost never seen as dyslexic, adding that: “It is important in the face of the general suspicion of those with ‘invisible disabilities’ to make disability visible  ...   make different ways of learning acceptable, and offer a counterpoint to cultural renderings of invisible disabilities as simply a synonym for sloth” (Titchkosky, 2002, p. 36).

Yet, a general theme in the literature is that disclosing is a predicament, characterizing it as the hidden disability dilemma (Fitzgerald & Paterson, 1995), the disclosure conundrum (Goldberg, Killen, & O’Day, 2005), and the critical question of whether to conceal or reveal (Bouton, 2013). Disclosure is a predicament because of the perceived combination of any number of disadvantages and advantages in a work setting. A study of persons with epilepsy and diabetes found that notifying potential or current employers could result in failing to obtain employment or losing one’s job (Lingsom, 2008). A survey of people with invisible disabilities in BC found that 88% feared a negative reaction to disclosing their disability (Reeve & Gottselig, 2011). The general point is that self-disclosure of a disability is fraught with choices and challenges and opportunities in the workplace (Gignac & Cao, 2009; Troster, 1997).

The decision to disclose is a personal calculation taken within a general cultural context that devalues disability and a specific organizational context that may present conflicting signals. On possible disadvantages of disability disclosure, the literature identifies the following:

Can cause the person to relive bad experiences of the loss of a job or negative responses from co-workers and others.

Chaudoir and Quinn (2010) examined disclosure processes across a wide range of concealable stigmatized identities (including mental illness, psychological issues and medical conditions), and found that an effective way to reduce the fear and risks of disclosing personal information about a stigmatized identity is to provide organizational and social support and positive feedback when the stigmatized identity is first disclosed. This can help people to experience a sense of trust in others and a comfort. Wilton (2006) found a patterned difference in the practice of disclosing by type of impairments. People with visual impairments and most people with evident physical impairments disclosed upfront, at the time of a job interview, because they needed a specific accommodation in the workplace. People with cognitive or learning disabilities were mixed in disclosing and not disclosing their impairment in the workplace. People with non-evident physical impairments practiced non-disclosure in interviews and at work, and people with psychiatric diagnoses were least likely to disclose to employers. This pattern relates to a hierarchy of stigma and acceptance associated with different kinds of disability noted in the literature.

5 Workplace accommodation for people with invisible disabilities

Employers can create an organizational atmosphere or workplace culture that encourages disclosure by people with invisible disabilities. An Irish publication on disclosure advises employers to be very clear about the competencies required for a job and give as much information, in accessible formats, as possible in advance. In recruitment and selection processes, employers should allow lots of opportunity for the individual to talk and disclose. For example, ask prior to interviews, at time of job offers and at reviews, “do you have any special requirements?” Moreover, employers should have clear procedures in place when someone does disclose, taking time to consider the situation and consult with specialists if needed (Hayes & Linden, 2012).

6 Conclusions

When researchers, activists or policy makers talk of people with a hidden, invisible or non-apparent disability, what do they mean? And, we need to ask: who is using what terms and to what aim?

As an exercise in concept mapping, this article has positioned invisible disability in relation to associated concepts of episodic disabilities, hidden impairments, psychosocial disabilities, and contested illnesses. Invisible disability was also examined in relation to three practices of managing information about a hidden disability, namely, passing, covering, and disclosing. Invisible disability is a significant matter because of its contested nature as an authentic condition; and because it intersects between personal lives and public worlds of social attitudes, legislation and policies, and workplace practices. In addition, in Canada the United Kingdom, and the United States, specific non-profit organizations and networks for invisible disability have formed in the last 20 years to share information and raise awareness about lived experiences and challenges of people with invisible disabilities.

Having an invisible disability is not a clear-cut clinical category or a distinct social identity. Invisibility is a complex social construction of many elements. It is a characteristic of an impairment, a choice of activity and context, concealment of the disabled self, social customs of silence and the suspicion of the others (Lingsom, 2008, p. 13). Thus, a disability may be invisible in one or more of several respects: to the person with the impairment, to health care and medical professions, to other people in social encounters, to policy makers and to service providers, to employers, co-workers or to customers.

Much of the mainstream literature on employment and disability does not consider the question of a person disclosing their hidden disability to an employer. Nonetheless, disclosure is a huge and difficult issue. While disclosure is the route to a workplace accommodation process and can be in the best interest of a disabled employee, making an invisible disability officially visible in the context of employment is a highly risky decision to disclose, with numerous potential disadvantages along with advantages. This making known can involve telling and retelling the story of one’s disability to an employer, supervisor or manager, co-workers, human resource staff, union representative and possibly clients or customers. From the limited research available, it seems that just a small portion of companies have formal policies and programs in place to address the needs of workers with invisible disabilities. Among other consequences, this might result in lower employment rates for persons with a disability, higher levels of absenteeism, and lost productivity to an organization of workers without reasonable accommodations.

Employers can foster a workplace culture that encourages disclosure by people with invisible disabilities. They can by being clear about the competencies required for a job: giving as much information, in accessible formats, as possible in advance. In recruitment and selection processes, employers can provide psychologically safe opportunities for the individual to disclose and talk about their condition or impairment and possible accommodation requirements. When someone does disclosure, employers should take time to consider the situation and, if needed, consult with human resource or disability management specialists. In turn, for a person with an invisible disability, there is the necessity, at some point in the employment relationship, to disclose their impairment, provide some documentation of the nature of the condition, and help to determine the impacts of the condition on job-related activities and the workplace. Even with disclosure, there can still be the problem of workplace accommodation stigma, in particular adverse beliefs and actions by other employees about the seeming unfairness of an accommodation because the disability is not obvious to others (Colella, Paetzold, & Belliveau, 2004).

From the literature review, a key finding is that many workplace accommodations for people with visible or invisible disabilities are about managing effectively rather than making exceptions. Effective management practices such as continuing open channels of communication to talk over workplace issues are invaluable. Progressive management and inclusive workplace practices provide an important overall infrastructure within which requests for reasonable accommodation can be more willingly disclosed, readily heard, and effectively implemented.

Conflict of interest

The author has no conflict of interest to report.