Balancing attendance and disclosure: identity work of students with invisible disabilities

Abstract

Despite increasing societal awareness of the challenges faced by students with disabilities, students with invisible disabilities have received relatively little attention. This study explores these students’ experiences, relying on interviews with 15 participants with various invisible disabilities who recently attended Israeli higher education institutions. Drawing on the analytical perspective of identity work, we explore how participants negotiate and construct their identities as students in the physical and sociocultural environments of higher education. We show that participants largely practice identity work over two continua: between presence and absence in academic spaces; and between revealing and concealing their disabilities in the context of an institutional climate underpinned by values of individualism, competition, and performativity. Through this spatial and discursive identity work, students construct their identities as abled and capable students and foster their sense of belonging in a prevailing ableist academic culture.

Points of Interest

• This study explored the strategies that students with invisible disabilities develop to negotiate higher education environments and craft their student identity.

• Students with invisible disabilities actively shape and develop their identities in response to academic space and academic culture by positioning themselves along two continua: between presence and absences in various academic spaces; and between disclosing and concealing their disabilities.

• Students with invisible disabilities negotiate presence versus absence in physical spaces—in the context of physical barriers such as low temperatures, long distances, and closed spaces coupled with strict timetables and attendance requirements.

• Students with invisible disabilities negotiate disclosure versus concealment of disabilities—in the context of institutional expectations and requirements constructed around the image of ‘normal,’ that is, able-bodied, students.

Keywords:

• invisible disability
• higher education
• disclosure
• students
• chronic illness

Introduction

The participation of students with disabilities in higher education (HE) institutions has increased significantly in recent years (Kimball et al. 2016). Recent legislation in many national contexts requires universities to actively promote adequate supports and accommodations for individuals with disabilities (Lindsay, Cagliostro, and Carafa 2018). Complementing these societal developments, researchers are increasingly seeking to characterize the challenges faced by students with disabilities toward identifying the obstacles that remain in ensuring these students’ full participation in HE. The current study contributes to these efforts, focusing on a relatively underexplored population: students with invisible disabilities (Mullins and Preyde 2013; Vergunst and Swartz 2021).

Invisible, or hidden, disabilities ‘are not visible or apparent to others, in complex ways that vary based upon the nature of the disability’ (Kimball et al. 2016, 100) and may include chronic health conditions, learning disabilities, or mental health problems. The experiences of people with invisible disabilities are distinct from those of other disabled individuals, primarily because the former face a choice to disclose or not disclose their disabilities. Research shows that individuals with invisible disabilities, including students, often withhold information about the extent and impact of their disabilities to avoid social exclusion and stigma, or may choose to ‘pass’ as non-disabled (Stanley et al. 2011; Olney and Brockelman 2003).

The current study aims to shed light on the experiences of students with invisible disabilities and, specifically, to analyze the manner in which they construct their identity as students within HE institutional settings. The study is based on interviews with 15 students with various invisible disabilities—specifically, chronic illnesses (Hamilton, Hulme, and Harrison 2021)—who currently study in Israeli universities and academic colleges or who recently graduated. In Israel, HE is largely public and is provided by two types of institutions: eight research universities and an open university, and about 50 academic colleges, mainly focused on teaching. In 2016, academic institutions in Israel were required by law to make their services accessible to students with disabilities (Almog 2018).

We draw on the social model of disability (Oliver 2013), which focuses on the sociocultural production of ability and disability and the resulting societal attitudes and barriers toward the disabled. Our reading of the social model concurs with perspectives that, while foregrounding social exclusion, acknowledge the impact of impairment on the construction and experience of disability (Thomas 2004). Our analytical approach is grounded in the theoretical framework of identity work (Brown 2022; Winkler 2018), which enables us to examine the processes through which students with invisible disabilities construct and reconstruct their identities as they attempt to make sense of who they are and how they want to appear to others.

The findings show how students with invisible disabilities draw on spatial and discursive strategies to negotiate the HE environment and to make sense of their identity as students. In the face of institutionalized barriers and exclusionary practices, they position themselves on two spectra: between presence and absence in various academic spaces; and between revealing and concealing their disabilities.

Students with (in)visible disabilities in HE

The rising number of students with disabilities in HE institutions has been matched with an expansion of research on the subject. The literature surrounding student disability largely concerns issues of barriers, disclosure, and accommodations (Kimball et al. 2016; Kutscher and Tuckwiller 2019; Lombardi et al. 2018). This research has identified numerous barriers faced by students with disabilities: physical space and accessibility of buildings, lack of availability of support services or of information about these services, and a lack of uniform standards for accommodations (Hopkins 2011; Fuller, Bradley, and Healey 2004; Jung 2002; Mullins and Preyde 2013; Moriña 2017). Kimball et al. (2016) note that arbitrary policies and pedagogic practices, or in other words, ‘the social norms of the college experience, such as the length of a typical semester, the amount of time allocated for individual class sessions, and the overreliance on objective testing to evaluate student learning’ (p. 96), are no less severe than barriers associated with physical space and architectural choices.

Recent research on the barriers faced by students with disabilities has devoted particular focus to ableist culture in academia (Brown and Leigh 2018). Ableism is the perception that disability is inherently negative, and non-disability is the normative organizing principle against which all are assessed (Campbell 2009). Hutcheon and Wolbring (2012) argue that ableism in academia relies on the adoption of the biomedical model of disability, which focuses on diagnostic labels and results in an individualized approach to accommodating disability. This approach places the responsibility on the student to initiate and maintain accommodations, a responsibility that typically involves a need to provide medical documentation as evidence of disability. Research about faculty attitudes and behaviors shows that, in many cases, faculty members do not believe in the abilities of disabled students, have diminished expectations of these students, or fail to offer support (Moriña 2017). Significantly, faculty fear that accommodations may compromise academic standards (Jung 2002).

Compared with students whose disabilities have obvious physical expression, students with invisible, or hidden, disabilities require different types of accommodations and adjustments and experience different challenges related to understanding, validity, and trust. Because of the invisible nature of their disabilities, these students often face skepticism from faculty, administrators, and students, who belittle the severity of their disabilities or question their validity (Mullins and Preyde 2013; Hamilton, Hulme, and Harrison 2021).

In HE institutions, students must disclose their disabilities to be eligible for accommodations. Yet, many students, particularly those with invisible disabilities, choose not to disclose (Lindsay, Cagliostro, and Carafa 2018). For these students, the process of disclosure emerges as complex and problematic, and they are engaged in constant decision making, weighing the benefits of disclosure against its costs—most prominently, the risk of coming up against widely held stigma against disability, leading to exclusion and marginalization (Miller, Wynn, and Webb 2017; Olney and Brockelman 2003; Matthews 2009).

Indeed, in a recent systematic review of the literature on barriers and facilitators of disability disclosure in post-secondary education, Lindsay, Cagliostro, and Carafa (2018) found that the most common barrier to disability disclosure is stigma and related concerns about discrimination and similar negative effects. Additional barriers include lack of knowledge of supports and how to access them, the influence of faculty and instructors, and personal coping styles. Facilitators included supports and resources that provide access to accommodations, acknowledgment of the benefits of disclosure, and coping and self-advocacy skills.

Research shows that students with invisible disabilities employ various strategies for disclosing information regarding their disabilities. These strategies involve controlling the timing and setting of disclosure, as well as the information disclosed, depending on needs and on the nature of relationships with others (Olney and Brockelman 2003; Goode 2007; Miller, Wynn, and Webb 2017; Wood 2017). For example, Wood (2017) explored strategies of disability disclosure of students at a large U.S. university and identified two main strategies: strategic genericism, in which participants disclosed that they were disabled but did not offer information about their specific disabilities; and selective disclosure, in which students shared one diagnosis or a partial diagnosis while avoiding a fuller discussion.

Disability and identity: the identity work framework

Research has increasingly begun to explore the premise that, in disclosing their disabilities, students effectively disclose information about their identities. This idea is supported by findings that students’ decisions regarding disclosure are influenced by the extent to which they perceive disability to be part of their identity (Miller, Wynn, and Webb 2017; Olney and Brockelman 2003; Wood 2017). It further implies that, as noted by Brown (2020, 68), disclosure ‘needs to be discussed as a personal, private event as much as it needs to be considered as a public event.’

The relationship between disability and identity implies that strategies of disability disclosure, such as those discussed above, effectively constitute strategies of identity management. Indeed, this idea is articulated by Brown and Leigh (2018) in an article reflecting on their work about the academic identity of academics with disabilities:

The decision about whether to disclose or to hide a condition is therefore an act of self-preservation, information control and impression management (Goffman 1990a, 1990b), and thus identity work. (p. 987)

The notion that students with (invisible) disabilities engage in specific forms of identity work is at the core of the present research. In general, the identity work framework is one of the social theories of identity formation; these theories aim to explore ‘how individuals make sense of themselves and how they relate to the social worlds they inhabit,’ bridging individual agency and social context (Ybema 2020, 52). More specifically, identity work refers to the processes ‘by which people signal, label and define who they are, and how they maintain, strengthen, protect, revise and repair these constructions in social interactions’ (Brown 2022, 1207). When engaging in identity work, individuals draw on cultural resources as well as on their inner worlds of thoughts and emotions (Alvesson, Ashcraft, and Thomas 2008; Winkler 2018; Ybema 2020).

A number of studies have explored the identity work of people with disabilities in various institutional contexts, such as workplaces (Kwon 2021), unemployment (Riach and Loretto 2009), or career transitions (Kulkarni 2020). These studies show how individuals interpret and shape their identities against common social perceptions of disability as problem or liability. In this study, we employ the theoretical lens of identity work to explore the experiences of students with invisible disabilities and the strategies that they develop to craft their student identity.

Methods

Aiming to explore a variety of experiences and perspectives, we recruited participants with a range of different disabilities from a variety of academic disciplines and HE institutions. Recruitment efforts consisted of postings on social media as well as snowball sampling. Participants were provided with information about the purpose of the research to ensure their informed consent. The research received approval from the Research Ethics Committee of the University of Haifa. An effort was made to protect the participants’ anonymity; therefore, participants are referred to using pseudonyms, and academic institutions are identified by institution type alone.

The second author conducted in-depth semi-structured interviews with 15 participants (13 females and two males). At the time of the interviews, five participants were enrolled in undergraduate studies, four in graduate studies, and six participants had graduated and provided a retrospective account of their experiences. Participants studied in 12 different HE institutions: 5 universities, five academic colleges, and two teachers’ colleges. They were diagnosed with different types of disabilities: familial Mediterranean fever (FMF; n = 4), Crohn’s disease (n = 3), asthma (n = 1), asthma and fibromyalgia (n = 1), arthritis (n = 1), nephrotic syndrome and stroke (n = 1), celiac disease (n = 1), brain tumor (n = 1), fibromyalgia (n = 1), endometriosis and fibromyalgia (n = 1). Ten students were diagnosed before enrolling in HE, and five were diagnosed during their studies. Participants’ details are given in Table 1.

Table 1. Characteristics of participants.

Pseudonym	HE institution	Program of study	Study level	Gender	Disability/diagnosis
Leeron	University 1	Educational Counseling	Graduate student	F	Crohn’s disease
Tamar	Teachers’ College 1	Language and Special Education	B.Ed degree	F	Crohn’s disease
Eden	Academic College 1	Psychology and Criminology	Undergrad student	F	Familial Mediterranean Fever (FMF)
Dana	Academic College 2	Health Systems Management	Graduate student	F	Nephrotic syndrome and a stroke
Dikla	University 2	Hebrew Language and History	BA degree	F	Fibromyalgia
Ariel	University 3	Civil Engineering	Undergrad student	M	Celiac disease
Shani	Academic College 3	Law	LL.B degree	F	Brain tumor
Noa	University 4	Human Resources	MSc Degree	F	Familial Mediterranean Fever (FMF)
Maya	Academic College 4	Biotechnology Engineering	BSc Degree	F	Arthritis
Dor	University 2	Information Systems	Graduate student	M	Asthma
Hila	University 5	Psychology and Communication	Undergrad student	F	Familial Mediterranean Fever (FMF)
Michal	University 4	Labor Studies	Graduate student	F	Familial Mediterranean Fever (FMF)
Keren	Academic College 5	Nursing	Undergrad student	F	Endometriosis and Fibromyalgia
Tal	Academic College 5	Nursing	Undergrad student	F	Asthma and Fibromyalgia
Miri	Teachers’ College 2	Hebrew Language and Sociology	B.Ed degree	F	Crohn’s disease

The interviews were aimed at understanding the interviewees’ experiences and insights as students with invisible disabilities. Questions concerned the student’s disability, the experience of living with it, the decision to enroll in HE, and the student’s experiences during his or her studies. Among the questions asked, for example, were, “Did you encounter any challenges related to your disability?”, “How did you cope with them?”, “Do you share information about your disability with other students?” The interviews took place in the second half of 2020, following the outbreak of the Covid-19 pandemic. Consequently, six of the interviews were conducted via zoom, and the rest were conducted face-to-face. Each interview lasted for approximately an hour and was digitally recorded and fully transcribed.

Data collection was followed by thematic analysis (Braun and Clarke 2013) with reference to the literature on invisible disabilities and identity work. The first and second authors independently read and analyzed all interview transcripts, identifying emergent categories, and writing analytic memos. Excerpts taken from the transcripts were placed in Word documents under category headings. In the second stage of coding, following further iteration between the literature and the identified categories, it became clear that the categories corresponding to identity work could be classified under two conceptual themes. These themes relate to two types of identity work we identified: (i) spatial identity work, carried out in relation to academic space; and (ii) discursive identity work, carried out in relation to academic culture.

Freezing campus: spatial identity work of presence and avoidance

Research about the experiences of disabled students in the physical environment of universities is usually focused on visible disabilities and their associated accommodations, such as lifts or hearing aids. Studies about the physical aspects of the experiences of students with invisible disabilities in academic spaces are limited (Mullins and Preyde 2013). Exceptions include several studies focusing on specific invisible disabilities, such as learning disabilities (Hall, Spruill, and Webster 2002) or Asperger’s Syndrome (Madriaga 2010); these works suggest that students choose to exclude themselves from mainstream social spaces in response to uncomfortable and threatening experiences, and feel difficulty engaging socially in university life.

In our study, the physical space of campuses raised challenges for both academic and social integration. Specific concerns, particularly for students struggling with seizures, pains, and fatigue, included low temperatures, long distances, closed rooms, crowded spaces, slippery staircases, and short breaks between lessons taking place in different rooms or buildings.

In particular, low temperatures inside lecture halls and other spaces were a significant concern for students who suffer from diseases characterized by seizures or attacks sparked by sensitivity to cold weather. Hila, an undergraduate student with FMF, commented:

The cold sets the whole system in motion toward a seizure. I cannot really move or behave normally on days with extreme cold, including during the change of seasons. So the weather is absolutely something that is a challenge for me and very much manages me.

Maya, an undergraduate student with arthritis, mentioned additional complications resulting from the timing of the exam period during the winter:

Winters were tough (…) the cold, the cold is unbearable, and together with muscle pain, it was often simply impossible to function. And with January and February also being the examination period, those first years were a real party and not the good kind.

Dikla, diagnosed with fibromyalgia, recollects how in her first year of studies, cold weather and mobility inside the campus proved to be major obstacles:

I think the biggest difficulty at the university for me was actually the physical environment. The university is built on a mountain, and it is cold there. And the academic year begins in October, at the beginning of winter, and everything there is uphill or downhill (…) The stone floors in the older buildings, in the hallways, are very slippery in winter, in the rain. I remember my first semester, I was a 19-year-old girl, and I kept saying to myself, ‘How do I not fall and crash here?’

Movement to and within the academic institution was a significant challenge for many interviewees. The tensions between distances and timetables were particularly problematic and sometimes resulted in aggravating the disability. Dor, a graduate student with asthma, explained:

There are challenges of distances within the College. If there is a long walk in a short time between classes, I sometimes arrive out of breath to class, and it’s very much like after sports training - only in this case, I have to be focused on the lesson.

Noa, a graduate student with FMF, had to balance cold weather, long distances, and tight schedules. She had to plan her movements in advance and make some concessions:

I remember it was mostly about mobility within the university. Everything was very far away, and I remember that in the winter, my muscles burned! The fun of having half-hour breaks was replaced by calculations of how I would get from this building to that building. I remember giving up many times on the coffee I love in a certain cafeteria because it was far away.

Giving up on popular student hangouts was a recurrent theme, as was restricted access to academic spaces, such as the library. Dikla shared her experiences of access restricted by pain:

Unlike healthy students, I was less able to move from building to building and from one cafeteria to another. I stayed around the area of my classes so as not to aggravate my pains by coming and going (…). Another difficulty was taking books from the library. (…) For a seminar, I had to go to the library and take about 15 books at once [too many for me to carry comfortably] and carry them home.

The library was also challenging as a closed and noisy space. Shani, who had surgery due to a brain tumor, found it difficult to study there after her surgery:

I could not sit in the library, I felt it closed in on me. Before the surgery, I really liked to study there, but after the surgery, I wanted to study at home, in my room, in silence, without any background noises.

Tali, diagnosed with severe asthma and fibromyalgia, describes her experience of sitting in closed classrooms, experiencing coughing fits and fibromyalgia-related pain:

To sit in a closed classroom for 45 minutes, when the windows are closed and the air conditioner is turned on… I will describe it in the most accurate way: I just can’t breathe. I missed whole lessons because I couldn’t breathe. (…) The number of times I missed parts of lessons because I had a coughing fit. Will I disturb the whole class now? No, I will get out. (…) You sit in class and you cough, and with the fibro attack, my legs are burning, I want to die, in a minute I will sit on the floor and cry because of the pain, and I’m having an attack, and coughing like hell, and there is a lesson going on around me.

Students had to employ various spatial strategies of managing disability that revolved around strategic absence from social and academic spaces: skipping lessons, leaving early, avoiding social gatherings, and giving up options that, for some students, had been available before the outbreak of the disability.

The physical barriers that students faced, and the related coping strategies, were especially salient when they collided with academic procedures and requirements—most prominently, attendance requirements. Attendance requirements—and related enforcement policies—have become common in universities as a means of improving student learning, as well as encouraging students to develop attitudes of responsibility and respect (Macfarlane 2015). In Israeli HE institutions, academic departments often maintain a rigid common standard of requiring students to attend 80% of class sessions, with noncompliance resulting in a penalty of disenrollment from the class. Tamar, diagnosed with Crohn’s disease, reflected:

I remember the issue of attendance as a great burden. I remember saying to my husband: ‘Why the hell did I not go to study at the Open University? Why do I have to deal with mandatory attendance at lectures now?’ It was very difficult for me that although they knew I had Crohn’s, I still had to comply with the 20% absence requirement like everyone else.

Tamar shared a story of experiencing the difficulties of the attendance policy:

I remember one day, when I already had two absences [from a course] and I felt so bad, I couldn’t leave the toilet at home, feeling sick and weak. (…) In class, I literally moaned in pain, and my friends noticed. The first question everyone asks is, ‘If you’re not feeling well – why did you come?’ What do you mean, ‘Why?’ I came because if I had missed class, I would have had to drop the course. Everyone knows it, and everyone keeps asking. In the end, I was in class for only about half an hour, and then I went home. The lecturer understood, and luckily it didn’t happen again in that course, so I passed it.

Hila, an undergraduate student with FMF, reveals how attendance is more than a technical requirement, a physical burden, or bureaucratic hurdle. For students with invisible disabilities, attendance is linked to self-evaluation and social image:

It is difficult for me to accept it. I don’t like to miss classes. I don’t like to stand there and ask for help from lecturers when I miss a lot of lessons. It is just not a pleasant experience; it doesn’t matter that my case is justified. Many times I come to class even when I’m sick, just to not be absent a lot, and just so they [the lecturers] will get to know me. (…) It’s annoying to be this miserable person, who is different, and can’t attend classes. But sometimes I really couldn’t [attend]. So I saved my absences for those cases when I felt half dead.

Miri, diagnosed with Crohn’s disease, described in detail the ‘rules’ she formulated to manage her presence-absence, and the implications for her self-identity as a student:

I coped in a very focused way: my stomach hurt? I went home. I needed to go to the toilet often? I just went there and sometimes left for home. I woke up in the morning extremely tired and felt the beginning of an unusual pain? I tried not to exercise my body too much. And, of course, there were also uneventful days, which is what gave me the strength to feel that I’m normal and that I belong.

Thus, students’ strategies of managing disability within academic space—navigating between presence and absence, developing their own restricted map of the campus, avoiding certain social spaces and academic spaces—are closely related to self-reflection, feelings of ‘otherness,’ inclusion and exclusion. These students’ spatial experiences affect their sense of worth and their feelings of belonging to the HE institution, and they create a limited experience of academic life. In this regard, some interviewees experienced the Covid-19 pandemic as an equalizing mechanism, which created a new, shared, virtual space for disabled and non-disabled students alike. Hila explained:

The coronavirus outbreak is good for me. I will not lie. I’m studying from home, which is already a good thing. My private, personal and comfortable space. It has no substitute. Especially now, toward the winter. I feel that I perform better when I’m calm (…). The confidence of being at home allows me to be my true self.

Students’ personal and social identities are constructed within the physical spaces of the campuses where they study. The students interviewed for this research employ spatial identity work in the context of physical barriers such as low temperatures, long distances, and closed spaces, coupled with strict timetables and attendance requirements. They manage their disabilities through strategies such as presence and absence in lessons, libraries, cafeterias, and other academic spaces. Through these strategies, they also construct their identities as students, striving for a sense of belonging, normalcy, and worth.

Chilly climate: discursive identity work of revealing and concealing

Scholars describe current academic culture as underpinned by neoliberal values of competition, corporatization, efficiency, and performativity (Naidoo and Williams 2015). In this context, a prevalent discourse of individualization portrays students as individual customers acquiring learning and skills, with an emphasis on individual responsibility, self-sufficiency, and personal achievements. It also explains the academic difficulties of non-traditional students through an individual deficit framework, ascribing social inequalities to individual inadequacies (Baker, Brown, and Fazey 2006; O’Shea et al. 2016). It is not surprising that, in this environment, disability policies rely on the medical model of disability, which conceptualizes disabilities as medical phenomena, focuses on particular impairments, and consequently offers individualized treatments or accommodations (Matthews 2009).

The students interviewed for this study described their experiences in this ‘chilly’ institutional climate. The starting point, and central issue, was the requirement to disclose disabilities in order to be eligible for accommodations. The students interviewed for this study were engaged in finding the balance between concealing and revealing their disabilities. In general, as illustrated in what follows, attaining this balance constituted a form of identity work, informed by the normative expectation of the non-disabled, ‘normal’ student—where ‘normal,’ in the academic context, means independent, competitive, capable of independent study, and also capable of collaboration.

Concealment of disabilities: avoidance of exclusion and rejection

Many interviewees were reluctant to disclose their disabilities, owing to prior experiences across their lifetimes and across a variety of social environments. Interviewees shared stories of confronting social stigma, shame, and exclusion—in schools, the health system, military service, and other social circumstances. Tali, an undergraduate student with severe asthma and fibromyalgia, summarized the general feeling:

I think that people who are a bit broken inside have the tendency to show the world that they are well built… that we are unbreakable.

Notably, much of the interviewees’ negative prior experience was within the social environment of HE, which was experienced as a competitive culture, in which every student is responsible for managing his or her own academic journey. Dikla, diagnosed with fibromyalgia, described her impressions as an undergraduate student:

It is like you are entering this ant nest, where everyone is working, and you have to get in and adjust yourself. You have no one to talk to. It’s not like in high school, where you have your advisors and homeroom teacher.

When Dikla did not meet the attendance requirement in a course, she enrolled again:

I was thinking, ‘OK. I’ll do it again.’ I was in a state of mind of ‘my problem’: ‘I did not attend, I couldn’t make it, it’s my problem.’ (…) In that period, I was like a little girl in the grownups’ world, and I felt I did not have many rights.

In other cases, the decision to conceal disabilities was based on specific incidents. For example, Keren, a nursing student with endometriosis and fibromyalgia, shared a story about her first semester, when she felt ill and went to rest for an hour at a friend’s place. She approached the lecturer when she came back to campus:

She showed no consideration. She marked an absence and said, ‘there’s nothing we can do.’ She was very rigid. I was afraid that other lecturers would also respond this way. Like, ‘you have nothing to do here.’ It made me feel that there is no place for me in academia, that I am defective. Like there are standards that need to be met in order to get a degree, and they don’t care what I go through along the way.

The nature of the disability was also a factor influencing participants’ tendency to conceal their disabilities, based on misconceptions of others about the nature of certain disabilities, or shame associated with other disabilities. Ariel, diagnosed with celiac disease, talked about misunderstandings, shame, and privacy surrounding the disclosure of his disability:

My disease is well known, and I suppose quite a few students have it, but when I eat gluten, it is very unpleasant. It’s about vomiting and toilets, and I don’t want to talk about it with people, especially lecturers. Furthermore, I have a feeling that its severity is underestimated, like, ‘What’s the problem? Don’t eat gluten.’

Students diagnosed with Crohn’s disease also talked about shame and fear of revealing their disability to lecturers and peers. Miri explained:

Crohn’s is not a pretty disease. Everything about it is toilets, and pain, and hospitals. I did not feel close enough to anyone to be able to talk about it. (…) I just didn’t want to share things that are very personal and very much my own, and I didn’t want others to pity me.

Tali, who suffers from severe asthma, also described confronting misperceptions and underestimations of the severity of her illness:

I feel like asthma is perceived a little differently, something like, ‘Use an inhaler, and everything will be fine.’ But my case is not like that. It is also invisible. Maybe if they would have seen me suffocating…

Disclosure was perceived as a threat to the ability to be a student, to perform well, or to work in the profession for which one is training. Tali, who studies nursing, a vocational discipline, shared her fears:

I have to tell the clinical instructors, and when I do, they say, ‘Wow, are you sure you want to be a nurse?’ Yes, I am sure, and I’m scared to death that you will impede me because I have asthma.

Some students expressed fears of rejection by the institution as well as by other students. Dana, a graduate student with nephrotic syndrome, suffered a stroke during the first year of her undergraduate studies:

In this degree program, there was only one friend I talked to. And even with her, I only talked about the nephrotic syndrome. I really don’t want to be treated differently or for people to raise eyebrows over my decision to study. I always have a fear of rejection. That I will not be accepted. That they will make it harder for me, to make me understand how much I do not belong, and that only ‘perfect’ people, without problems of this kind, can study.

Shani, who had surgery due to a brain tumor during her Law studies, also feared that her disability might make her seem unfit for academic studies:

I was an outstanding student, and now I have to extend my studies over a longer period, and I have this defect on my way to graduation. This automatically makes me feel different and abnormal, and maybe from their point of view, it classifies me as someone who needs help – and I don’t. I didn’t want them to think that maybe it [the disability] was the result of pressure and maybe I’m in a place that is beyond my abilities.

Strategic revelation: between full disclosure and information on a ‘need to know’ basis

In striking a balance between revealing and concealing their disabilities, students adopted various strategies of disclosure. On one end of the spectrum were students who chose full disclosure. For example, Dor, diagnosed with asthma, understood disclosure as an act of coping and strength:

Already at registration, I was looking for someone I could talk to about the problem. I know it’s not visible, but once I experience an attack, it is very harsh. It cannot be hidden and should not be hidden. (…) I disclosed the disability to all my friends and all my lecturers. (…) I think it conveys the message that you have your feet on the ground and that you are aware of the shortcomings of your medical condition, and that you want things to be sorted out for the best.

Dor considers disability disclosure as a transaction (Stanley et al. 2011), revealing information about his health condition in exchange for understanding, support, and accommodations. Other students felt less comfortable with full disclosure. Maya, an undergraduate student with arthritis, went through an inner struggle, indicating that she perceived disclosure of her disability as revealing a weakness, a flaw, an affliction:

I had to disclose my situation to each lecturer and then figure out how to deal with their decisions. There were lecturers who were more empathetic and others who were a little less so. I can’t describe the situation as inviting or pleasant for me. Each time, I went back to my inner struggle with myself about whether to share and seem ‘pitiful’ or whether to keep my mouth shut.

Most students chose a more restricted approach. One strategy was revealing their disabilities on a ‘need to know’ basis. For example, Hila, an undergraduate student with FMF, explained:

I disclosed my condition at the Dean of Students office, and from then on, I didn’t talk. They told me it’s their job to manage it. I also informed the chair of the department. Only the people who were responsible for the accommodations.

Rhetorical strategies of disclosure

In disclosing their disabilities, students employed elaborate rhetorical strategies. A common strategy was downplaying the disability among friends and exaggerating it when interacting with lecturers. Maya, for example, chose to disclose her arthritis in overstated terms to lecturers, sometimes as a preliminary and preventive measure:

When you tell a friend, you provide few details; you don’t want them to pity you. And when you tell lecturers, you exaggerate everything and look like the most miserable person in the world.

Thus, although Maya felt bad about seeming pitiful to lecturers, as mentioned above, when she does disclose, she actively tries to be as pitiful as possible.

Michal, a graduate student with FMF, felt she needed to magnify her disability to make lecturers sympathetic, but also as a means of managing expectations:

I tell friends, ‘I have FMF, and it’s a hereditary disease that causes attacks, and I might miss classes, and sometimes I might make plans and then cancel.’ (…) I say the same to lecturers, but maybe I exaggerate a bit to make them show empathy. Maybe they will lower their expectations of me, and I will not feel so much pressure.

Hila, also diagnosed with FMF, chose full disclosure to disability services staff and told a shorter, softened version to friends and lecturers:

I told the Dean of Students’ staff openly, with the details and the documents and the whole situation as it is, without filters. I am not a simple patient, and in order to get what I deserve, I had to present the reality as it is. With others, I soften the reality. If it’s friends, then I say, ‘I have this illness in my stomach that hurts my immune system, so I may be sick more often,’ so they won’t feel sorry for me. Not too much detail. With lecturers, it’s the same.

Outcomes of disclosure: insufficient accommodation

In many cases, following disclosure, students found that the accommodations provided by universities and colleges were minimal, insufficient and inappropriate for their needs. Above all, these accommodations did not fulfill students’ need to be heard, accepted, and valued. Shani, who had surgery due to a brain tumor, explained:

I was given extra time. That’s it: 25% extra time compared to the others, the healthy ones, who did not have brain surgery. Besides that—nothing. No special dates if necessary, no compassion (…) I do not need extra time, I need to be told: ‘In light of your situation, if you need time - take it.’ I need to be told: ‘If something happens - we’re here.’ In such extreme situations, if you hear these words – chances are you won’t need the assistance. You will feel that you have someone to rely on. And that’s it. That’s really what I was missing. My boyfriend gave it to me, friends too, family too. The College didn’t.

Tamar, diagnosed with Crohn’s disease, felt that although she received accommodations, her identity as a disabled student was not accepted:

I was entitled only to 25% extra time in exams, which was helpful. (…) but what I missed was the feeling of ‘everything is going to be fine – you have disclosed your condition, and we will try to help you.’ (…) In my case, in which there are good days and bad days, I feel that I’m treated as if every day is a good day. And this is difficult. It’s difficult when they don’t give space to something that is an inseparable part of my life.

In sum, each interviewee’s decisions and strategies with regard to disclosure versus concealment of disability were related to the kind of person, and the kind of student, that the interviewee considered or wanted himself or herself to be. Decisions were based on students’ prior experience in other social contexts and on their experiences and understandings of academic culture and environment. In their identity work, they positioned themselves along a continuum between full disclosure and non-disclosure. Most participants did not fully disclose or fully conceal their disabilities: they tried to create a balance that would enable them to receive accommodation and minimize experiences of misunderstanding, stigma, and shame.

Discussion

The purpose of this study was to understand the identity work of students with invisible disabilities: how these students’ identities are constructed and performed within the institutional settings of colleges and universities. On the basis of interviews with 15 students with invisible disabilities from various Israeli HE institutions, we argue that these students actively construct and shape their identities and that the choices they make in relation to campus space and the institutional climate of HE are integral to their identity work.

In particular, the identity work of students with invisible disabilities is largely carried out over two continua: between presence and absence in academic spaces (spatial identity work); and between revealing and concealing disabilities to others—peers, lecturers, and disability support staff—in the context of an academic culture of individualism, performativity and, indeed, ableism (Brown and Leigh 2018; Hutcheon and Wolbring 2012) (discursive identity work). Each form of identity work is associated with a variety of (spatial or discursive) strategies.

Regarding spatial identity work, our findings reveal that students negotiate tension between academic requirements on the one hand, and, on the other hand, barriers to fulfillment of those requirements arising from the physical environment on campus. This tension manifested most prominently with regard to attendance requirements. Interviewees’ academic environments were full of visible and hidden physical barriers such as long distances, slippery stairs, low temperatures, or closed rooms, which caused them to be late, to be absent, and to fail to meet requirements. The symptoms of their disabilities—such as low energy, fatigue, or seizures—coupled with their invisible nature, made it harder to mobilize, attend class, arrive on time, and simply be present in academic spaces. These findings resonate with Mullins and Preyde (2013) argument that the organizational structure of academic studies inherently gives rise to physical barriers for students with invisible disabilities—such as the size of lecture halls, noise in class, or the number of students in the room.

Students’ strategies of spatial identity work essentially involved decisions regarding whether to participate in various academic spaces. Thus, students with invisible disabilities simultaneously construct academic space—as they develop their own map of the campus composed of short routes and restricted spaces—and construct their student identity. In particular, the decision to be present implies compliance with institutional expectations and requirements constructed around the image of ‘normal,’ that is, able-bodied, students. Absence, on the other hand, means self-care and the opportunity to recuperate in cases in which students did not feel well. Yet absence is also detrimental to students’ sense of belonging and self-worth. The need to choose between presence and absence creates a restricted identity, one that does not always comply, participate, take part, or show presence.

Students’ discursive identity work, in turn, takes place in the context of the dominant social and cultural environment in HE: an environment that rewards independence, competition, and, indeed, ability (Naidoo and Williams 2015; Brown and Leigh 2018). In this institutional climate, students with invisible disabilities find that the validity of their disabilities is questioned, and their experiences are misunderstood or ignored. Disability policies rely on the medical model of disability (Hutcheon and Wolbring 2012; Matthews 2009), and students are expected to individually manage processes of disclosure for accommodations. Students employ discursive identity work of concealing and revealing their disabilities to manage the advantages and disadvantages of disclosure.

The association between disability disclosure and identity is echoed in prior research, which shows that disclosure of invisible disabilities is more than a process of requesting needed accommodations. As Goode (2007, 42) points out, ‘disclosure acts as a symbol of and repository for a complex nexus of issues and social relations.’ The decision to reveal versus conceal is heavily influenced by public- and self-stigma, both in general and specifically in the social environment of HE. As Brown and Leigh (2018, 987) write in a study of academic staff:

Invisible, less known, or contested conditions are dismissed as a fabrication, malingering, and an act of a fundamentally lazy or overwhelmed worker seeking validation. Considering such strong views, the act of disclosing automatically links the personal and private to the public.

Our findings suggest that students’ decisions and strategies regarding disclosure were informed by the following factors: 1) students’ individual self-image and levels of self-acceptance—some participants perceived disclosure as a manifestation of strength and self-reliance, whereas for others, it constituted exposure of weakness; 2) the type of disability—some conditions are more prone to embarrassment and shame; 3) the audience—disclosure was perceived as having the potential to harm relationship-building with other students, and some students concealed or downplayed disabilities to avoid negative reactions. With lecturers, disclosure had a double effect: it could provide empathy and consideration, but students feared that it could also mark them as unfit for academia.

Students’ feelings of shame warrant further attention. Previous research has recognized disabled persons’ experiences of stigma and shame (e.g. Werner, Isaksen, and Malterud 2004; Åsbring and Närvänen 2002). As Jóhannsdóttir, Egilson, and Gibson (2021, 354) note, “The embodiment of shame is clearly an influential factor in the lives of disabled people, having a negative effect on their psychological wellbeing, life quality and participation.” However, as Lukin (2017) argued, studies informed by the social model of disability tend to emphasize narratives of pride in disability identity. The current study’s findings resonate with Lukin’s call to acknowledge shame as a component of the disability experience, making “a space for shame, more or less free of the imperative to transcend or mobilize that shame” (p. 239).

Another important finding is that, in most cases, the accommodations obtained in exchange for disclosure were inadequate, suggesting that they did not justify the potential identity threats (Brown 2022) attached to full disclosure. In the context of HE, such identity threats are inextricably linked to normative perceptions of students, or how ‘normal’ students are constructed: independent, productive, and competitive. Our findings suggest that students with invisible disabilities engage in discursive identity work to counter these threats and construct their identity as abled and capable students, and foster their sense of belonging in a prevailing ableist academic culture.

Invisibility emerges from this study as both a weakness and a strength: on the one hand, students with invisible disabilities face suspicions and disbelief, and on the other hand, they have agency in managing attendance and negotiating disclosures. Invisibility allows for elaborate spatial and discursive identity work strategies, as students position themselves on the continua between presence and absences in various academic spaces and between revealing and concealing their disabilities to different audiences. The barriers they face, and the identity work strategies they employ, reveal hidden layers of exclusion and inequality embedded in academic environments.

Conclusions

This study contributes to the limited body of extant knowledge concerning the experience of students with invisible disabilities. We analyzed how these students construct their student identities within the physical and sociocultural environments of higher education. Our findings highlight students’ agency in their identity work as well as in the exclusionary institutional structures in which they are entangled. These findings have important implications for higher education institutions and should prompt a reevaluation of deeply embedded exclusionary structures, as well as the inadequacy of current accommodations in addressing them. Beyond the need for accessible learning spaces, flexible regulations, and increased awareness among staff and students, it is the need to be heard, accepted, and valued that emerged as the foundational experience of students with invisible disabilities. A notable limitation of the study is the relatively small participant group, comprising 15 participants, primarily female, and most of them having chronic illnesses. Furthermore, the research was limited to the Israeli context. Future research should explore a larger and more balanced sample. The findings also call for additional research about the intersection of invisible disability with other social categories, such as race and social class.

Disclosure statement

No potential conflict of interest was reported by the author(s).