# DISABILITY AND (IN)VISIBILITY WORK

Rachel Le Marois

Edited by Oana Branzel & Anica Zeyen,

*The Routledge Companion to Disability and Work*, 1st Edition, 2024, p. 155-165

https://www.taylorfrancis.com/chapters/edit/10.4324/9781003350781-16/disability-visibility-work-rachel-le-marois

## Introduction

This chapter aims to contribute to the literature regarding the inclusion of people with invisible disabilities (IDs) (PWIDs) in the workplace. Companies are under increasing pressure to meet a certain quota of disabled workers in their workforces (Barnay et al., 2016; Revillard, 2019; Wuellrich, 2010) creating more tensions around the disclosure of employees' disabilities (Buchter, 2020; Revillard, 2020). Disclosure is a phenomenon that occurs on a broad spectrum, ranging from surface-level disclosure of one's disability status, to deeper uncovering of one's impairments, the challenges and impact on one's daily life and work habits. It is also varied in the sense that disclosure can be wide-ranging (e.g. in front of all members of an organization) or focused on one or two chosen individuals. These questions of disclosure choices are relevant for all types of disabilities, whether visible or invisible, and generate tension regardless of the degree of visibility of one's impairment (Rocco, 2004). However, the disclosure of an invisible disability differs from others in that the individual has the option of keeping their disability entirely concealed, making the pressures associated with the decision to disclose even greater (Jacquinot & Pellissier-Tanon, 2022, p. 125). Focusing on PWID therefore helps to explore understudied aspects of disability inclusion, including questions on workers' choice to disclose their disability, the pressure for companies to meet their quota and hence to identify employees in their workforce who have IDs, and the specific challenges and trajectories of PWID.

Scholars define invisible disability (ID) as the fact of having an unmarked and concealable medical impairment (Le Roux & Marcellini, 2011; Revillard, 2019) which remains unperceived and thus enables the holder to be identified as “normal” (Goffman, 1963; Lingsom, 2008) or as not having a disability. PWID therefore make a choice to disclose their impairments, which can create better acknowledgment (Norstedt, 2019), but also increase risks of becoming stigmatized or not believed (Pryma, 2017a, 2017b). ID encompasses a list of concealable impairments or illnesses such as chronic pain, learning disorders, cancer, acquired immunodeficiency syndrome (AIDS), Crohn's disease, chronic migraine, psychological troubles, and other medical impairments that are invisible but may create specific challenges at work (Carrye Syma, 2019; Jain-Link & Taylor Kennedy, 2019; Ragins, 2008; Santuzzi et al., 2014; Syma, 2019). PWID may choose to conceal their disability within their workplace due to a variety of factors such as social pressure, internal company policy and context, perceived stigmatization, fear of discrimination, as well as for their own self-esteem and self-image (Berkley et al., 2019; Johnson & Joshi, 2016). Choosing not to disclose a disability in the workplace can have some advantages: employees may avoid experiencing stereotypes and devaluation (Jain-Link & Taylor Kennedy, 2019) and escape the negative assessments of their customers, partners and suppliers (Weeks & College, 2015). The disclosure of a disability may imply “lowered supervisor expectations, isolation from co-workers, and increased likelihood of termination”
(von Schrader et al., 2014). Not disclosing one’s disability can be seen as a form of impression management, whereby individuals seek to shape the perceptions that others hold about their own identity (Cahill & Eggleston, 1994), through three key strategies: concealing, acknowledging, and communicating shared interests (Stone, 1996). Concealing one's disability requires a complex form of emotional work. Similarly, disclosing a stigmatized identity at work is an “affective event” shaped by a complex interplay of these various factors (Berkley et al., 2019; Clair et al., 2005; Jones & King, 2014; Pachankis, 2007; Ragins, 2008).

Yet, over time, non-disclosure of disability can have severe health consequences (Hull et al., 2017): employees who hide their differences have little to no accommodation for their disability (Carrye Syma, 2019; Colella & Santuzzi, 2022), they must remain silent about the pain (Jammaers & Williams, 2021), and cannot seek help (Saxena & Pandya, 2017). Hiding aspects of one's identity is uncomfortable (Shepherd, 2018), leading to fear of being discovered (Jain-Link & Taylor Kennedy, 2019), isolation (Clair et al., 2005), and increased stress and anxiety (Hull et al., 2017; Jain-Link & Taylor Kennedy, 2019b). In addition, the extra effort required engenders fatigue (Hull et al., 2017; Jammaers & Williams, 2021; Saxena & Pandya, 2017). Lastly, ID can be visible in certain situations and generate ambiguity in work relationships, which can impact the credibility of workers with ID (Clair et al., 2005). In this complex interplay between visibility and concealment, time accentuates the visibility of the disability by virtue of the very practice of concealment. Over time, concealment can exacerbate the disability-related difficulties, which can lead to visible manifestations such as burnout (Jammaers & Williams, 2021). Those who perpetuate concealment also perpetuate the obstacles to improving their working conditions, accentuating the complex contradiction and interdependence inherent in this paradox, thus reinforcing this cycle.

Disclosing one’s disability renders accommodation within the work environment possible and appropriate accommodations can increase employment and decrease turnover of employees with disability. This confers advantages to both the employer and the employee by enabling the provision of accommodations, promoting a positive work atmosphere, sustaining employment and facilitating the organization’s compliance with legislative requirements (von Schrader et al., 2014; Nevala et al., 2015). Studying the access to accommodations for PWID is relevant, because accommodations for IDs may be more nuanced or unconventional (Job Accommodation Network, 2021) and hence might be perceived as unfair by co-workers, especially if unexplained (Colella, 2001). This negative perception and underestimation is due to the difference between the real challenges faced by disabled people and the perception that others have of these challenges (Feldman, 2004). Accommodations can therefore prove to be more challenging to obtain (Colella & Santuzzi, 2022).

Enforcement of the law for people with IDs differs from those affected by visible disabilities, in terms of recognition (Joyeau & Moisdon-Chataigner, 2022, p. 17) and accommodations (Job Accommodation Network, 2021). IDs generally require more nuanced assessments and fewer common work accommodations such as those required for depression, with greater emphasis on understanding the specific needs of the individual than on observable disability (Joyeau & Moisdon-Chataigner, 2022, p. 17). This distinction, which necessitates flexible and adaptive approaches, is not always captured in disability legislation, raising the question of the effectiveness of laws in supporting people on the full spectrum of disability, including concealable disabilities. While research has explored how people with disability perceive disability laws in their lives (Engel & Munger, 2003; Revillard, 2017, 2020), I am contributing
to the analysis of legal consciousness of PWID in workplaces. In this context, we lack an
understanding of how the specificities of IDs, and the related choice of (non-)disclosure, affect
how PWID perceive their rights, and how they interpret existing policies related to disability
inclusion.

As part of my current thesis fieldwork, initiated in November 2021 in France, I have
interviewed 32 employed PWID and 36 disability managers (DMs).<fnref n="1" /> Based on these interviews,
I use examples from PWIDs at work and some reflections of DMs to illustrate how, in the
intricate and delicate landscape of disability discourse, a paradox emerges around the identity
of PWID.

Identity Paradox of Workers with Invisible Disabilities

I confess I haven't, I haven't declared myself as disabled. Well, in the sense that I have a
disability. When I filled in the [information questionnaire provided by my company when
I was hired], it was just a question about disability in general, without asking for details
about it. As a result, I identified it as a question about a physical disability or something
really serious. As for dyslexia, I can't really identify what we're really talking about here.
Because I think there are a lot of things mixed up together. (Interview, February 23, 2022
with William,<fnref n="2" /> a PWID working for a company of 800 employees.)

PWID often face challenges in recognizing themselves as disabled: confusion, feeling of illegitimacy (Barth, 2022, p. 109). Because not all PWID consider themselves as disabled (Schneidre, 1988) and not all feel part of the disabled population targeted by disability policies (Revillard, 2020; Schneider & Ingram, 1997), this affects consciousness of their rights (Revillard, 2018), meaning the consciousness of the rights that they are entitled to because they belong to a specific minority (Chappe et al., 2018; Chua & Engel, 2019; Marshall, 2005). Yet, other factors might reinforce the perception of rights of PWID, and in particular the asymmetric relationship whereby PWID have some leeway to decide whether they wish to discuss their disability status or not, while companies have a strong incentive to identify who, among their workforce, has a disability certificate (Revillard, 2020), in order to count them in their quota (Buchter, 2020). This leverage of workers with IDs and potentially limited needs for work accommodations creates a power relation that can transform how workers with IDs perceive their rights and accept laws and accommodations. On the other hand, PWID but who require accommodations, could use their status as leverage to obtain their needs. Becoming advocates for their own accommodation requires employees to develop expertise on their rights and accommodations that they can access by themselves (Buchter, forthcoming; Epstein, 1995), in order to have those rights enforced. Here, I will explore three paradoxical dimensions of PWID's identities at work: first, the tensions between self-perception and societal categorization; second, the paradox between individual identity and one-size-fits-all policies

<footnote n="1">¹ Person in charge of designing and implementing disability policies in the organization.</footnote>

<footnote n="2">² To ensure anonymity and safeguard the privacy of the participants, the names of all interviewees have been replaced with pseudonyms.</footnote>
targeting disability; and third, the paradoxical question of disclosing or not disclosing their
disability for people with IDs.

I interviewed employed PWIDs who are not close to public or activist action and mainly advocate for their rights through words. As evidenced in the following excerpts they shape their advocacy approach within the three dimensions of paradox identified above.

Paradox of self-perception versus societal categorization

The first tension between self-perception and societal categorization is illustrated in the quote
below:

I don't feel disabled, and I don't think I necessarily want to. I'm just aware that sometimes in my life there are situations that are a bit disabling for me. But no, I don't feel I'm disabled and with a disability it's just a sort of little illness [Ankylosing spondylitis]. There are lots of cases where it doesn't change anything, and there are cases where it changes things a bit and I have to adapt. Until one day, maybe, I won't be able to walk anymore. (Interview, July 18, 2022 with Elizabeth, a PWID working for a company of 35,000 employees.)

In this extract, Elizabeth recognizes situations that are challenging but not assimilated into a common sense of disability. This ambivalence towards the label “disabled”, while acknowledging the impact of their condition, illustrates the complex identity questioning at play for PWIDs. This has implications for their ambiguous categorization within administrative systems, creating a ripple effect that hinders access to their rights.

The disparity between how PWID perceive themselves and how society categorizes them might
also imply a struggle to reconcile their own understanding of their disability with the
expectations and categorizations imposed by society. Their internal conflict could impact the
way they articulate their concerns and experiences. Some might assert their rights confidently,
while others might face challenges in expressing their needs due to this conflict. As illustrated
below, the same person can exhibit varied reactions based on the environment they navigate
and the audience they address.

[As a teacher], I talk about [my disability] a lot with students who have difficulties because I think there are a lot of people who have issues because they have the same problem as me [being Asperger] ... I have 1,700 students. So if we just do statistics, that means there are maybe thirty or so who are concerned. So I always talk to them about it, not knowing if they have a real problem or not, but just in case, well, it allows me to say, you see, you're my brother. You're my brother completely. There's the second thing. It's the people who annoy me. I talk to them too because they piss me off and they're jerks and there are a lot of them among university professors, excuse me for putting it so bluntly, well, I tell them: "You see, you can have a difference and still be a university professor and director of research." That's it. (Interview, April 28, 2023 with James, working for a company of 200 employees.)

This interviewee illustrates different reactions of a PWID in different situations. James reveals
his support towards students sharing similarities with his own background, portraying himself
as empathetic and supportive. However, he also faces societal categorizations and expectations, particularly addressing those who he believes fail to comprehend or accept differences. By highlighting his achievements as a university professor and research director even though he has Asperger's syndrome, James challenges societal categorizations. In doing so, he challenges the conventional belief that difference could hinder professional success, thereby attacking stereotypes and societal expectations. In contrast, the following example illustrates a much less clear-cut response to this ambivalence.

In relation to my illness [depression with suicide attempt, hypersomnia, cognitive memory problem], there are times when I get understanding from my manager and my colleagues, and there are times when I don't. Because it's invisible, people forget. And I didn't realize that when my mother talked to me about it. She has got the thyroid thing. No, really, it's really hard because you feel like you're repeating it all the time. And that's what's so bad, because sometimes you end up identifying yourself only through this prism. And I don't want that, in fact. So, it's very complicated to say no. (Interview, August 29, 2022 with Katherine, working for a company of 2,000 employees.)

This extract highlights the difficulties encountered by Katherine in her relationships at work. She sometimes receives understanding and support from her superiors and colleagues regarding her disability, but at times, this understanding fades due to the invisibility of her difference. This fluctuation in recognition by others makes her feel forgotten. Moreover, the sentence "sometimes you end up identifying yourself only through this prism" highlights the internal conflict associated with being categorized or defined solely by one's disability. Katherine expresses the desire to avoid this singular identification, highlighting the tension between the desire to assert her identity beyond disability and the recognition of the complexity of managing and articulating her needs within societal expectations. This conflict influences her ability to navigate her identity and express her needs authentically. Finally, this internal conflict is exacerbated by the option to conceal her disability due to its invisibility and, as well expressed in the following testimony, by the negative connotation associated with the name of the category "disability".

When we say "disabled", it actually feels very pejorative. You get the impression that you're being a bit judgmental, though I understand where it's coming from. But I don't agree with the term "disabled". I might choose not to engage in discussions using that term because it isn't right for me. Disabilities come in various forms, and for me, the term "disabled" doesn't quite capture it accurately. It's ironic that even as I discuss it now, I find myself using the term "disability". (Interview, February 5, 2022 with David, a PWID working for a company of 10,000 employees.)

Like David, many PWID expressed a clear reluctance to personally embrace the label of "disabled". David explains his disagreement with its usage and might actively avoid discussions where this term is employed. However, even in expressing his sentiment, he paradoxically ends up using the term "disabilities", highlighting the ongoing struggle and complexity in defining one's identity within the sphere of disability.

## Paradox between individual identity and one-size-fits-all policies targeting disability

Second, PWID must navigate tensions between their unique identities and the one-size-fits-all policies aimed at addressing disabilities. Their experiences and needs often do not align perfectly with the broad policies in place. This dissonance can affect the effectiveness of their
self-advocacy efforts, as they strive to convey the nuances of their situations within the framework of existing policies. Disabled workers are ideally situated to truly understand the type of accommodation that would be relevant for them, in line with the literature on feminist standpoint theory (Epstein, 1995; Laval, 2017; Morin, 2016; Naples & Gurr, 2013).

Most people who are disabled – we’re talking about disabled people – may not feel disabled. Like a diabetic, they can’t say they’re basically disabled, as is commonly understood. On the other hand, when they’re working, they may be disabled, because if they can’t control their blood sugar levels, if they don’t have the right equipment, etc., they’re going to be in real difficulty. So it’s quite possible not to feel disabled, but to find oneself in a disabled situation in certain contexts, and that’s what makes the difference, because we have to make certain people understand that they are in fact disabled, even if they’re not aware of it, and that they meet criteria for what the law calls “disabled workers”. (Interview, February 21, 2022 with Christine, a DM working for a company of 8,000 employees.)

Here, a person in charge of implementing disability policies in a company describes how it could be challenging to define disability due to the intersections between personal identity and societal categorization. Christine explains the nuanced nature of disability, especially ID like diabetes, which may not align with common perceptions of disability. PWID may not perceive themselves as disabled, even though they can encounter disabling situations based on specific contexts, like work environments. Rigid categorization of disability might enter in tension with variability of disability experiences among people. Yet, recognizing diabetics as disabled according to the law might be important to grant them access to an accommodation, even if PWID don’t personally identify as such. This tension between personal identity and legal categorization underscores the difficulty in fitting diverse experiences of disability into standardized policies meant to address disabilities in a general sense. These challenges might be compounded by the limited knowledge that people have of the law, as we can see below:

Sincerely, I think that 90 per cent of people don't know the legislation and don't know what a disability is. Today, if you've had a burnout, you can apply for an official disability certificate for one or three years to make your work easier, and so on. If you're suffering from the after-effects of an illness such as cancer or a heart attack, or something like that, you can also apply for an official disability certificate. So I think one of the difficulties today is that we've lumped a whole range of situations and pathologies together under the term "disability". And I can tell you that when you tell dyslexics that they need to be looked after by the disability office, they look at you like: "But it's okay, I'm not disabled." So there's a lack of understanding of both the legislation and, I think, such a broadening of the notion of disability that many people say to themselves: "Well, yes, I may have this pathology, but in my head I'm not disabled. (Interview, July 4, 2022 with Robert, a DM working for a company of 700 employees.)

This verbatim statement highlights the broadening of what is considered a disability in legislation, and explains that this broad definition, while intending to be inclusive and supportive, remains challenging. It leads people, such as people with dyslexia, to question their
classification as disabled. PWID may not see themselves as corresponding to the traditional notion of disability, even though they meet the criteria defined by law. This illustrates once again how individuals, despite meeting the legal criteria, may not see themselves as disabled, creating a gap between their personal perception and the categorization prescribed by disability policies. The following quote further explains this:

> Today, I don't know about endometriosis because the law has been passed recognizing it as a long-term illness, but today I've been told that when I got my official disability certificate, I was told that I was 5 per cent disabled; despite this, I take care of myself every day, I'm in pain every day, I have no choice because I can't be assisted and I don't want to receive an allowance and stay at home, but every day I'm in pain. (Interview, March 15, 2022 with Allison, a PWID working for a company of 10 employees.)

Allison points out another type of discrepancy between the official recognition of a disability and the PWID's lived experience (Fillion, 2022, p. 187). Although Allison is officially recognized as disabled, she is only acknowledged as 5 per cent disabled, and her day-to-day reality contradicts the official classification, as her needs and experiences are not adequately considered or nuanced in existing policies. Moreover, Allison's reluctance to accept an allowance and her preference for continuing to work despite the daily pain demonstrate the complexity of her identity and her desire for independence.

## Paradox of the choice of disclosing or not disclosing a disability for people with invisible disabilities

The tensions described theoretically in the introduction regarding whether to disclose IDs at work are empirically exemplified here. Current empirical research on the topic of disability disclosure in the workplace is mainly focused on visible disabilities (Berkley et al., 2019), or addresses the subject of concealable stigma in a generalized way, or considers only a specific impairment and does not focus on the distinct experiences of the PWID group. However, the PWID population is unique in that they have the option to conceal their difference. The issue of disclosing one's disability is crucial for PWID.

### *Disclosing a disability*

The following instances demonstrate how the choice of disclosure is not binary, not permanent, not always conscious, and is dependent on the responses provided by the environment.

> I don't know. Because I tried to tell the disability manager that I was in a lot of trouble [due to my attention deficit hyperactivity disorder] and even now, I feel helpless in a lot of situations. I feel I am in difficulty. And I told him about it, and he said: "Yes, but I'm going to need your up-to-date disability certificate and so on." ...But the thing is, he didn't know what to do. He said: "But in fact, I need something from the doctor to tell me what to do, and then I'll put it in place." (Interview, July 8, 2022 with Matthew, a PWID working for a company of 270,000 employees.)

This illustrates the struggle of PWIDs to advocate for their needs at work. Matthew explains that he has attempted to communicate his difficulties to the company's DM, seeking support because he felt powerless in various situations. However, the response revolved around the need
to obtain a disability certificate and follow medical procedures, which hindered timely support. It makes him feel that his situation is not understood (Fillion, 2022, p. 187), that managers do not know how to address his needs, and that talking about his disability at work will not help without specific external guidelines. The following interviewee adds that after the disclosure, even when a work accommodation has been officially established, she needs to constantly remind others of her invisible condition and consciously or unconsciously balance meeting workplace expectations and not appearing overly burdensome.

In fact, you always have to remind people without reminding them that you can't do everything, [in my case due to a latent fatigue that can lead to exhaustion]. Normally I only work in the afternoon. But there are often morning video conferences. I don't mind that, but on the other hand, when there's a series of long days, then it's difficult and I know I'm putting myself at risk if I have a series of difficult days. (Interview, November 24, 2023 with Cynthia, a PWID working for a company of 30,000 employees.)

This illustrates the delicate balance between asserting PWID's needs and taking account of society's expectations. Cynthia stressed the need to subtly remind others of her limitations without being too insisting. This reflects the constant effort to assert her rights without overtly highlighting her disability and explains the internal conflict that PWID face when asserting their rights. Cynthia may adapt to certain working conditions to fit in, but also recognize the risks taken in doing so. This internal negotiation between complying with workplace standards and defending her well-being illustrates the complexity of thinking through the choice of disclosing or not disclosing a disability for PWID.

## Not disclosing a disability

In this section, I select an example that highlights the prevalent fear experienced by PWID who conceal their ID at work.

In the hospital, people talk a lot. There's a lot of talk about everyone, and I didn't want anyone to know. I may have told a few colleagues. Nursing assistants with whom I was close enough and who I trusted not to reveal it. I never told the nurses. Because it might be frowned upon. Since they have the same diploma as me, they know what's going on. They know what you have to deal with. They know the alert levels you have to deal with all the time, and I'm afraid they'll think: "Well, if I were him, if I had the same problem as him, maybe I'd have said that." And I don't want it to come back to bite me in the ass, so I hide it. And I don't want the managers to see me differently or to be too careful with me. (Interview, August 29, 2022 with Christopher, a PWID working in a company of 10,000 employees.)

Christopher is caught in a dilemma. On the one hand, he wishes to share his condition selectively. He trusts a few colleagues who he believes will not reveal his disability to others. On the other hand, he fears being judged or suffering potential repercussions, particularly from people in a similar hierarchical position to him, if they were to learn of his condition. He is confronted with the idea that revealing his disability could alter perceptions, or even the way
his colleagues or superiors see or treat him. Christopher therefore opts to conceal his disability to avoid possible negative consequences or altered perceptions, illustrating the complexity and tension inherent in the decision-making process for PWID.

To sum up, these three paradoxical dimensions – between self-perception and societal categorization; between individual identity and one-size-fits-all policies targeting disability; and the choice of disclosing or not disclosing a disability for people with IDs – impact the way individuals can advocate for their rights by shaping their self-expression, altering their approach to policies, and emphasizing the continuous efforts required to make their voices heard and their needs acknowledged within the complexities of societal perceptions of the disability and disability policy frameworks.

## Conclusion

To conclude, the paradoxical nature of invisible disability can be seen in its dual capacity to confer both benefits and challenges for PWID. While the concealment of a disability can provide a sense of autonomy and enable PWID to work without attracting attention and stigmatization, it can also give rise to a multitude of invisible obstacles, including misunderstandings and skepticism, as well as unsuitable environments (Barth, 2022, p. 114). This dichotomy calls for further exploration, to develop inclusive policies that recognize and address both the strengths and vulnerabilities associated with the overall spectrum of disability. This spectrum should encompass a myriad of IDs (Barth, 2022, p. 107). Additionally, it involves fostering a work environment that enables PWID to thrive while navigating a competitive work environment, dismantling the varieties of ableism that weigh on workers (Jammaers & Zanoni, 2021).

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