An Exhausting Job: A Story of Psychiatric Disability in University as Performativity (Dis)Rupture

Kate Roberts Bucca

University of Prince Edward Island

Author’s Note

Kate Roberts Bucca https://orcid.org/0000-0002-1897-7296

Correspondence concerning this article should be addressed to Kate Roberts Bucca at kroberts4467@upei.ca

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Who gets to perform the identity of student? What does it feel like to be suddenly unable to perform this identity in the context of the university? How does the process of obtaining accommodations impact a student’s sense of belonging? What messages do faculty attitudes send to students who seek accommodations for psychiatric disability? In this article, I attempt to address these questions, drawing on the existing literature and my own lived experiences.

Though attitudes toward individuals living with a mental illness have shown improvement in recent years (Sánchez et al., 2018; Sandhu et al., 2019), there remains a disconnect between self-reported inclusive attitudes on the part of faculty and the reported lived experience of students with psychiatric disabilities (see Carroll-Miranda, 2017; Francis et al., 2019; Stein, 2013; Thompson-Ebanks & Jarman, 2018). Social desirability bias likely accounts for some of this disparity, as study participants may wish to appear inclusive to others or themselves (Larson, 2019), understanding it to be a desired stance in today’s postsecondary environment even if they do not, in practice, support inclusion. Yet survey response bias alone does not fully illuminate why some students with psychiatric disabilities still face disbelief and stigma from postsecondary community members. A lack of cognizance regarding the impact of ableist behavior, combined with entrenched notions of the correct performance of student, may better explain why perceptions do not always translate into actions.

Kaul (2017) situated ableism as existing "not [in] a single institution, or university, but [as] a way of organizing the academy, the world" (p. 176) that frames disability as an added burden, potentially needing accommodation, that is brought to the classroom by a student. Due to such attitudes, the fear of being stigmatized by the postsecondary community prevents some students from outing themselves as living with a mental illness, requiring them to forgo academic accommodations (Kruse & Oswal, 2018; Stein, 2013). At the core of the dismissive behaviors and statements exhibited by some faculty, outlined in the scholarly literature, is a disbelief, an invalidation of student experience often couched in language of performativity (Carroll-Miranda, 2017; Francis et al., 2019; Lyotard, 1984/1979). What does it feel like, what does it mean, to go through the documentation process for accommodations only to be disbelieved about a psychiatric disability?

To facilitate answering this question, I adopt the fictional short story form to explore a student’s journey to receive accommodations in her classes during a manic episode of bipolar disorder. Stories that highlight the emotional—and, even, existential—impact of negative, stigmatized interactions open up space for faculty, students, administrators, staff, and the general public to empathize with the experience of individuals who have encountered ableism in university and to question the motivation(s) and assumption(s) underlying systemic stigma in education. Employing a fiction-based research approach, I tell a story that draws on research literature, imagination, and my own experience as a student with a psychiatric disability to inform the character and plot, using interiority to demonstrate the meaning—rather than simply the facts—of the events, in all their messy, human complexity (Leavy, 2016).

First, I explore the research literature on the experiences of postsecondary students with psychiatric disabilities and contextualizes it within Lyotard’s (1979/1984) theory of performativity. Then, I describe my positionality as a researcher, followed by my methodological approach to drafting the research short story. Finally, comes the story, "An Exhausting Job" and a concluding discussion of the work.

Suggestion on How to Read This Article

Though the article is formatted in a traditional academic progression, the following sections may be read in any order. I encourage readers to engage with the short fiction prior to reviewing the scholarly literature and methodology, in order to experience the interiority and emotional core—the humanness—of the explored issue before framing it within the academic discourse (Leavy, 2012). If one wishes to do so, skip ahead to the section titled "An Exhausting Job" before returning to the literature review, researcher positionality, methodology, and discussion sections.

Literature Review

Success at university includes not only the attainment of new knowledge and a degree, but also engagement with the community—the attitudes of the full university community towards students with psychiatric disabilities contribute to the overall environment and its degree of inclusivity (Sánchez et al., 2018). Students with psychiatric disabilities acknowledge some improvement in societal attitudes toward mental illness (Francis et al., 2019), but also cite stigma toward mental illness that often stems from media portrayals as a concern (Stein, 2013). Students with psychiatric disabilities, which may be nonapparent, sometimes choose to pass, or not out themselves through disclosure (Thompson-Ebanks & Jarman, 2018). Passing is a performance of expected behavior and appearance, according to social conventions in a particular context, and varies over time (Brune & Wilson, 2013). While passing is often portrayed as internalized stigma, it also can represent strategic empowerment or resistance to ableist discourses (Brune & Wilson, 2013; Cox, 2013). People with invisible disabilities may be more likely to face ableism indirectly, such as through microaggressions, policing of whether they are disabled enough, and internalized ableism, and may struggle with their right to identify as part of the disability community (Kattari et al., 2018).

Fear of having normal emotions attributed to a mental illness prevents some students from sharing their diagnoses with their peers (Stein, 2013). Pearson and Boskovich (2019) have suggested that faculty being open and vulnerable about disability with students can break down boundaries and lead to greater solidarity amongst students of differing experiences. Professor perspectives and vulnerability are two key factors that influence students’ decision to disclose, or not disclose nonapparent disabilities (Kranke et al., 2013). Some students disclose to raise awareness among faculty and pre-emptively address potential inconsistencies in their work, while others delay disclosing until symptoms begin to interfere with academic performance (Kranke et al., 2013). Others still opt not to disclose at all, for reasons ranging from intermittent need for supports to fearing stigma and its repercussions (Kranke et al., 2013). Given the challenges of the official documentation process and concerns about formal disclosure, some students choose to disclose informally to select professors (Thompson-Ebanks & Jarman, 2018).

When students do disclose in order to receive accommodations, they must provide documentation of their disability, a process that, itself, can be emotionally and financially burdensome (Thompson-Ebanks & Jarman, 2018). Laws regarding the granting of accommodations vary from country to country, and undergoing the documentation process does not guarantee that the supports will be enacted (Alberta Human Rights Commission, 2010; Katsiyannis et al., 2009). When accommodations are granted, they involve a wide range of supports, including, but not limited to, a note-taker, preferential seating, excused absences, extended time on assignments and tests, alternative formats for assignments and tests, and quiet spaces for testing (Stein, 2013). Yet accommodations often follow a one-size-fits-all approach, resulting in supports not suited to individual needs (Carroll-Miranda, 2017; Dowrick et al., 2005). This misfit of supports is particularly pronounced for students with psychiatric disabilities—disorders that frequently do not follow a predictable pattern and are cyclical in nature—who may not be well-served by standardized accommodations (Kruse & Oswal, 2018).

Faculty reception to accommodation requests holds the potential to empower or disempower students with disabilities (Pearson & Boskovich, 2019; Riddell & Weedon, 2014). The primary positive outcome of disclosure is receiving the necessary supports to access fully, and have a positive experience in, higher education (Stein, 2013; Thompson-Ebanks & Jarman, 2018). Students report feeling “empowered once they received effective and appropriate supports at school” (Francis et al., 2019, p. 253). Encountering educators who respond positively, through exhibiting understanding and caring attitudes toward students who disclose, further contributes to a sense of inclusion (Francis et al., 2019; Thompson-Ebanks & Jarman, 2018). Simply obtaining documented, official access to accommodations, whether or not students avail themselves of the supports, can offer a positive outcome in terms of reduced anxiety (Stein, 2013). Additionally, some students with disabilities view disclosure as an opportunity to raise awareness, reduce misconceptions and stigma, and actively push back against ableism in higher education (Carter et al., 2017; Pearson & Boskovich, 2019; Thompson-Ebanks & Jarman, 2018).

In contrast, negative outcomes of disclosure include additional labour, encountering ableist attitudes, and increased feelings of isolation. Some students report finding the process of attempting to access accommodations to be exhausting and an ongoing challenge that takes substantial energy and work (Carroll-Miranda, 2017; Francis et al., 2019). Ableist attitudes persist in academia, at times forcing individuals who disclose to face professors who accuse students of attempting to gain an advantage in the class through accommodations (Pearson & Boskovich, 2019); view extensions as rewards (Carter et al., 2017); or disbelieve the student’s need for accommodations, suggesting the student simply needs to study harder (Carroll-Miranda, 2017; Dowrick et al., 2005; Francis et al., 2019). Such experiences reinforce stigma and can lead to feelings of isolation (Francis et al., 2019), undermining inclusion efforts in the postsecondary community.

Each of these dismissals of a student’s request for accommodations—as unfair advantage, as (unfair) reward, or as unneeded—can be viewed as rooted in a neoliberalist approach to education that values performativity and success based in merit and production (Cowen, 1996; Lyotard 1984/1979). If academia were not fundamentally driven by competition, offering students supports would not call forth an accusation of attempts to get an advantage over peers or an admonishment for laziness. Yet the educational system, in its drive for legitimation, sends a clear message: “Be operational (that is, commensurable) or disappear” (Lyotard, 1984/1979, p. xxiv). A student who performs outside the bounds of the entrenched system—one who asks for the right to produce knowledge in a manner deemed less efficient or threatening to established performative norms—jeopardizes the function of the university under the production-driven neoliberal society (Cowen, 1996; Lyotard 1984/1979). The potential disruption presented by accommodating a student with a disability—as the knowledge produced from such a student may not be “saleable” or “efficient” in rigid, performative terms (Lyotard, 1984/1979)—is a risk to the university’s performance, when the system’s goal is not full participation but full production (Roberts, 2013). Some who perpetuate ableist responses to accommodations may do so simply because that’s how the university operates, driven by performativity’s “connotations of measurement, completion, and perfection” (Stone, 1999, p. 301). By calling attention to the specific, lived impact of such responses within the current educational system, the fictional story works to disrupt resistance to accommodations—rooted in abstractions of student—through building empathy.

Researcher Positionality

The structure of academia and its standards, developed during an era where access to education was highly restricted by identity, continues to affect perceptions regarding who belongs in the system. Carter et al. (2017) noted that the history of academia serves as the foundation for ableism that pervades the system, as the institution was "created and structured around the ideal, productive body that is ideologically predetermined for white, cisgender, heterosexual, able-bodied males" (p. 96). The experience of disabled individuals varies according to many factors, including intersecting identities (Brune & Wilson, 2013). As a White, cisgender woman from a middle-class American background, I come to academia with a substantial amount of privilege. I was raised with the assumption that I would attend university and, though I did not have the financial resources to pay out-of-pocket, I knew how and was able to access financial aid. Though I am bisexual, I am in a marriage that appears straight, and I do not face significant discrimination due to my sexuality.

Intersecting with my privileged identities is my position as an individual with a psychiatric disability. My initial diagnosis with schizoaffective disorder (which entails symptoms of both schizophrenia and bipolar disorder) arrived after my symptoms necessitated my withdrawal from an early attempt at university and derailed my participation in academia for half a decade. On a regular basis, I deal with hallucinations, intrusive and disorganized thoughts, and mood instability, including mania, depression, and mixed states. Yet, after more than two decades of living with and learning to recognize and manage symptoms, I largely am able to pass as neurotypical. I am rarely visibly disabled. As such, I experience being both a part of the disability community and an outsider to it (Johnston & Sanscartier, 2019), with a degree of privilege from appearing able-bodied. The decision to (not) pass carries its own complex meaning for me, as someone who has ranged from attempting to deny my diagnosis (internalized stigma) to embracing my identity as disabled to weighing the risks and benefits of passing in any given situation (Cox, 2013). My orientation to the idea of passing in my own daily life remains in flux.

Methodology: Fiction as a Vehicle for Empathy

The decision to tackle the intersection of and tension between psychiatric disability and performativity-based attitudes about accommodations through fiction was rooted in a desire to “build critical consciousness, and raise social…awareness” (Leavy, 2016, p. 50) in educators. The capturing of interiority made possible by fiction invites readers to place themselves in the minds of characters, opening space for empathy as they consider the inner and outer lives of those in the story-world (Leavy, 2016; Stansfield & Bunce, 2014). As Leggo and Sameshima (2014) noted, narrative “recognizes some of the possibilities of meaning that lie always in the seemingly tangled messiness of lived experience” (p. 543), and offers a way to illuminate and forefront some of those possibilities of meaning.

During the process of producing an autoethnographic master's thesis focused on barriers to accessing higher education for a student with psychiatric disability, I was immersed in reading literature surrounding accommodations and postsecondary student experience to contextualize the study and my own experiences. This review of the literature, both during the production of my thesis and, subsequently, the beginning of my doctoral program, provided data and ideas for the creation of the story in this article, as did my own lived experience as a student with a psychiatric disability, all of which facilitated the writing itself as a method of inquiry (Richardson & St. Pierre, 2005). My intention in creating a short story that highlights the experiences of navigating higher education with a psychiatric disability is to capture the embodied truth of the research through an ethnographic fiction that "refigures the relationship with the reader/audience and opens up myriad possibilities of transformation and change at the macro and micro dimensions .... [and] trusts the reader to think and feel with the [story]" (Inckle, 2010, pp. 38–39). Further, approaching the topic through fiction enabled the representation of multiple voices from the literature, as well as my own experience, in an ethical format that considers relational ethics and recognizes the manner in which autoethnographic work implicates others (Ellis et al., 2011). Though fiction-based research, like autoethnography, is not generalizable, I argue that the format allows for the combination of self-research and literature review to present a particular embodied story in an ethical manner, one that echoes the fact that the experience of being disabled is neither static nor generalizable, yet invites others into a particular experience so that they might imagine the experience of disability more broadly and with greater compassion.

The emotional components of the story, in particular, stemmed from autoethnographic consideration, including details such as the feeling of mania and of sitting in a classroom while managing symptoms; the oscillation between hope and despair in reaction to the possibility of and resistance to accommodations; and the disruptiveness to a sense of identity that stems from hearing disbelief of a psychiatric disorder and the dismissal of experience, particularly in the context of an accommodations request. Other story details do not follow my exact experience; for example, though I have gone through the accommodations process and had both positive and negative experiences, I did so during graduate school, not undergrad, and I have never lived on-campus at a university beyond an initial 6 weeks before my withdrawal after diagnosis. I drew heavily from descriptions in the literature, which both echoed my own and added depth of detail to the events of the story, such as a participant's assertion that "I've had [the disclosure of the nature of the disability] used against me. I don't like to tell people unless it's absolutely necessary" (Stein, 2013, p. 155); Francis et al.'s (2019) study that found "instances of professors 'refusing to accommodate' their required accommodations...because they did not believe participants required the accommodations" (p. 251); and a professor's response to an accommodation request that "revealed her condescension, complete irritability combined with underlying disgust" (Pearson & Boskovich, 2019, p. 11). The mixing of autoethnographic research with accounts of similar experiences in the literature serves both to synthesize data and to further center the focus on an embodied truth drawn from multiple voices in an ethical format. Imagination, specifically for the details of the setting and the characters, rounded out the approach.

Following Leavy’s (2016) advice for constructing fiction-based research, I considered which aspects of the data I wished to explore, as well as the intended—or, at least, hoped for—response I desired to evoke in readers. I gathered these key ideas into a document, which I printed and taped above my writing desk for easy referral. I produced the initial draft over the course of 4 weeks, writing in sections (which largely remain delineated by "****" in the story), after which I set it aside for a week in order to gain artistic and emotional distance from the piece. Next, I returned to the draft to consider it in the context of the data I had hoped to incorporate, which resulted in additions to the dialogue. I then considered whether the story contained enough interiority and sensory details to evoke the response I hoped for in readers, which led to additions in these aspects of the story. Finally, I sought feedback on the story from trusted writing peers, who enabled me to determine areas that needed additional attention. The full process of drafting the research story took 4 months and involved seven drafts; the final product of this process follows.

An Exhausting Job

As Greta Sampson awoke early one morning from uneasy dreams, she found herself unable to control the dark mood that had been percolating in her brain for some time, a small bubbling of tension that threatened, now, to overtake her focus. Greta surveyed her setting. The small dorm room had seemed adequate at the start of the semester—if a bit cramped. She was lucky to have scored a single. Her twin bed was covered in a crumpled cerulean bedspread, a modest desk was cluttered with unorganized papers and depleted highlighters, a few gallery posters were taped to the walls, commemorating her initial desire to major in art, a desire she pushed aside to reorient herself as an economics major for the sake of future career options. With the skin-crawling agitation of mania expanding minute by minute, Greta felt the walls of the room encroaching.

An unfinished essay awaited her engagement. The thought of opening her laptop to look again at her dissection of Billy Pilgrim’s coming unstuck in time tremored through her limbs—ripples of disgust distinctly removed from her usual love of literature. Books had always been a safe haven. Why her brain would betray her in such a pointedly cruel manner was a question she entertained with each episode of illness. As she tried to corral her leaping mind, her hands pulsed an erratic rhythm against the bed, and she wrestled with her next steps. While she did not want to disclose her bipolar disorder, she also did not want to fail her classes.

Greta had known this day may arrive. A moment when she could no longer banish the swinging of her moods to an almost separate part of her, a non-academic part she kept hidden from classmates and professors alike. Her parents had been reluctant to allow her trek north of the border for school, worried about the distance between Mid-Atlantic United States and Atlantic Canada, but capitulated when Greta committed to weekly check-ins. While she maintained the regular phone calls, she rarely disclosed her full experience. Since receiving her diagnosis in her final year of high school, Greta had grown skilled at compartmentalization. At passing. For two years, she had avoided registering with the Disability Services Office, keeping her condition quiet enough and maintaining high marks; the occasional blip of a late assignment, missed class, or subpar quiz the only outward testaments to the condition she managed on a daily basis. But, now, as autumn descended and darker, colder days set in, the familiar rise of heightened discomfort and her inability to quell it suggested her medication might need changing, a disruptive process involving a degree of trial-and-error, one requiring additional appointments with her doctor. Even a switch in meds would not guarantee an alleviation of symptoms. Greta could not know how long this episode might last. How long it might affect her ability to study.

Relying on popular media portrayals, people assumed mania as equivalent to euphoria, all excitement and creativity—and it was, at times. But Greta’s mania quickly slipped from the pleasant thrill of energy to the exhaustive form of a mixed state, depression and agitation dancing with the highs, leaving her unable to abide her own body. Focus, a near impossibility, at least in any straightforward, traditional student way. She may end up pulling all-nighters, but not to study; rather, from an inability to silence her racing thoughts. How would she attend class? Sitting through the lectures, keeping on-point during discussions, making herself appear no different from her peers—a challenge, even on some good days.

Her peers. Greta never discussed her illness, even with her closest university friends. She didn’t trust they would understand, particularly given that dismissive language about mental illness was casually embedded in everyday conversation.

Wait, I thought you wanted to go for pizza,” Greta might say.

Yes, but now I want pad Thai,” Alice would reply. “Ohmygawd, I know, I’m so bipolar.”

Or, Greta might notice and comment on Taylor’s well-organized binder. “Can I steal your notes? Everything’s so perfect. I’m always losing track of the handouts.”

I know, I’m totally OCD about my class stuff,” she’d reply.

Greta even caught herself, with regularity, calling events and ideas crazy or insane.

****

Several days later, Greta headed to the meeting she’d scheduled with the Disability Services Office, arriving 10 minutes early. Housed next to the on-campus health clinic in an imposing brick building, the DSO was far too publicly visible for her liking, and she battled an inner voice telling her to ditch the appointment and grit her way through the semester, unsupported. As she sat waiting, she considered whether her failure to deal with the symptoms—failure to be normal, she thought, even as she chastised herself for using the word—was an indication that she lacked the qualities associated with university graduates. Isn’t that what all those trendy books and assertive parents said? It’s all about grit?

Greta Sampson?” A 30-something man in thick-rimmed glasses and a forest green cardigan led her back into his office. Several manila folders filled with papers sat stacked on the edge of the desk, face down. Greta imagined her name imprinted in block letters on the slim label tab, perhaps with a case number associated with her file, and involuntarily shook. Records of her time in hospital sat in her psychiatrist’s office; did she really want another file of her disorder in another place?

Jeff, the DSO coordinator, mistook the shudder for a shiver. “Sorry, it stays a bit cold in the office. I can turn up the space heater, if you’d like.”

Thanks, I’m fine.”

So, let’s have a discussion about what supports are typically offered as accommodations, whether you see them fitting your needs, and the letter that we’ll send to alert your professors. Thanks for submitting documentation of your diagnosis already; it helps move the process along, and means that what we come up with today will be official instead of provisional.”

Jeff outlined the standard accommodations offered at the school: time-and-a-half to double-time on assignments and tests; a student note-taker; a quiet room for testing; and alternative formats for assignments, such as oral instead of written work.

Umm, I don’t really know that I’ll need those. Or that they’ll even be helpful,” Greta said quietly, feeling defeated.

What would be helpful?”

Well, I guess extra time on exams might help, if I’m having a bad day with focus because of the mania. Maybe the note-taker? But, really, I can’t predict how rough my symptoms will be on any given day. It varies. If I stop sleeping and my mind starts leaping too much, for example, I don’t even know how I’d be able to finish a paper until I managed to regain my focus. I can’t always control it.”

Jeff appeared sympathetic, understanding. “What I hear you saying is that you need flexibility, maybe with assignment deadlines?”

That would be possible?” Greta sensed a small hope taking hold.

It seems reasonable to me. We can put it in your letter.”

I don’t want to seem like I’m trying to get away with something, though.”

I know you’re not. Think of it as accommodations helping to level the playing field.”

My other big worry is if symptoms get bad enough, I don’t know how to sit in a lecture and listen to the professor, let alone hide my mania. Sometimes it feels like my skin is crawling and I can’t sit still and every noise grates on me. Other times I struggle to get out of bed. But I don’t want to fail for missing class, some of the profs are really strict about that. Like, in my math class, participation, which pretty much means attendance, is 15 percent of my grade.”

What I’m hearing is that you worry about losing points for having to miss class due to your disability. We could put down flexible attendance,” Jeff suggested.

Really?”

The small hope grew. Greta began to wonder whether she would, in fact, be able to complete the semester without having to withdraw while she figured out new medication and dealt with the amplified symptoms. She was already behind most of her friends from high school, having taken a two-year gap after her diagnosis to focus on health. Not the kind of gap year other students bragged about, like working for an NGO in Switzerland or hiking the Appalachian Trail start to finish. The pressure to keep pace with prescribed timelines pervaded every aspect of university. With accommodations, perhaps she wouldn’t have to fall further behind her peers and risk feeling out of place. Perhaps, rather than expending so much energy worrying about how to perform like a normal student (neurotypical, she corrected herself) while also controlling her symptoms, she would be able to focus that concerned effort into the studies.

Jeff’s reply halted her optimism and called her fear back to the forefront. “But, I have to warn you, flexibility with deadlines and attendance aren’t usually offered here, so you may encounter resistance.”

Wait, what? I thought you said they were reasonable accommodations.”

I think they are, which is why I’m approving them.”

So, if you approve them, then I should be all set, right?”

Hopefully.”

Hopefully?”

At the end of the day, it’s up to the professors.”

But you’re the coordinator. Aren’t you in charge of disability services?”

Yes, but I don’t have the final say.”

Aren’t there laws about this?”

There are, though limited. It’s a bit of a grey area. Canada doesn’t have as strong of protections as, say, the United States.”

Why did I bother to disclose a disability if it might not even matter? If professors can choose to ignore it?”

You might not get any pushback. We’ll put them down as accommodations, you just need to be prepared for the possibility that some faculty may be reluctant to grant them.”

What happens if they won’t?” Greta’s voice wavered. She couldn’t imagine finding the energy for a fight when she was already so depleted from managing her disorder on top of her academic work.

Well, we can have a conversation with them. I can advocate on your behalf. But, ultimately, it’s a tricky area. Sometimes students just give up and try to get through without the supports. Let’s not worry about that unless it happens, though. Right now, let’s focus on getting this letter completed and sent to your professors. You will need to follow up with them to discuss the details.”

Greta remained silent as Jeff finished the document and emailed the form to the faculty for each of her classes. She muttered an anxious thank you as she left the office, afraid now of being known. Of what professors might say, who else might find out. Of whether it would all have been for nothing. As she walked back to her dorm, she felt exposed, as if she wore a flashing neon sign across her chest, labeling her bipolar.

****

C’mon, it’s freezing and we’re going to be late!” Taylor grabbed Greta’s arm and dragged her toward Butler Centre. Faded brown leaves crunched beneath their boots as they made their way across the quad. An early snowfall the night before clung to the grass in sparse patches, a reminder of the fiercer storms to come.

Greta scuffed her shoes over the carpet just inside the door, taking greater care than she normally would—any excuse to delay her arrival in class and seeing a professor for the first time since the accommodations letter went out.

Your boots are fine,” Taylor said, annoyance evident in her voice. “I know you don’t find economics all that hard, but I do and can’t be late. Come on, what’s with you today?”

Sorry, just out of it. Didn’t get much sleep.” Greta hoped her reply would pass as ordinary college student. Reluctantly she followed her friend into the lecture hall and geared herself for Global Economy. Though the topic interested her, conceptually, its delivery threatened to derail her attentive-student façade; she simply could not follow along in the oral presentation format when mania flexed its claws across her brain.

Through a combination of inner conversation, jumping and twitching legs, and an AirPod strategically hidden behind her untucked hair and cycling through her running playlist, Greta managed to sit through the 45-minute class. As she attempted to dash from the room post lecture, Dr. Garcia called out.

Greta Sampson, would you hold back for a moment?”

A couple of young men who apparently had yet to outgrow their high school personalities snickered, ooooh, someone’s in trouble. Greta struggled to restrain herself from snarking back. When manic, she was particularly quick to anger and had none of the patience, gained from years of enduring high school, to let annoyances slide off her.

When the room emptied, Dr. Garcia looked up from her computer. “Just wanted to touch base with you. I got the letter from the DSO.”

Uh, yeah,” Greta braced herself.

So that’s totally fine, if you need extra time or have to miss class. I just ask that you shoot me an email to let me know. You don’t have to tell me what’s going on, just give me a heads up that the work’s still coming or you couldn’t make it in, so I know you didn’t just forget. Sound fair?”

Stunned, Greta nodded and mumbled yes. After the meeting with Jeff, she had been prepared for the worst, ready to have to advocate for herself—something she’d never exceled at, especially in the face of authority.

Regaining her composure, she said, “Thank you so much. I’ll try not to be late or miss class.”

No worries, and please don’t think of it as late. As long as you’re getting the work done at some point so you learn the material, it’s all good. I mean, after all, isn’t knowledge the point?”

Yes, thank you,” Greta whispered, trying to hold back relieved tears. Embarrassed by the uncontrollable visible display of her inner state, she started to excuse herself.

Just one more thing, Greta. I don’t know what you’re going through exactly, but I do know that you belong here.” Dr. Garcia gestured toward her laptop. “Let me know if there’s anything else you need, even if it’s not officially on this list.”

****

Buoyed by her interaction with Dr. Garcia, Greta felt the hope creeping back in, slowly taking root. She thought of all the times during freshman and sophomore years when she nearly dropped out due to the exhaustion of white-knuckling her way through university, symptoms making each assignment, each course, exponentially harder. Even if she never needed an extension or needed to miss class—and she hoped not to have to—she felt comfort knowing those supports were there, that it was understood and acknowledged that there were additional barriers she faced, even if others couldn’t see them. Why had she waited so long to disclose?

The feeling, not quite joy, somewhere akin to optimistic relief, carried Greta through the next day and into her Political Novel class. Exhausted from another sleepless night yet wide awake with agitation, she pushed down the worry threatening to surface—worry that the relief-emotion she felt may simply be the mania, worry that she still had four other conversations with professors to go—and dragged herself across campus to the smaller, more intimate literature classroom.

Only 10 minutes in, the worry overwhelmed her. Dr. Williams darted disgusted looks her way and snapped when she lost her place, briefly, in their discussion of Slaughterhouse Five. Perhaps that is the mania talking, Greta reasoned with herself. Paranoia, an occasional symptom. She tried to focus, but couldn’t make sense of the words on the page when so many other stimuli called for attention. Still, she managed to appear knowledgeable about the text with a couple of brief comments, and turned her head toward fellow classmates as they spoke, as if she were absorbing their words.

At the end of class, Greta didn’t dare attempt to leave without waiting for Dr. Williams to speak to her, and remained sitting in her usual spot at the long oval table.

This is an upper-level course, Greta,” Dr. Williams started in, as students still shuffled out of the door. “I expect you to be prepared.”

I’m sorry, I just, it’s a rough day,” she tried.

I got the letter about accommodations. As I outlined in the syllabus at the beginning of term, no late papers will be accepted and attendance is mandatory, as you cannot learn without our discussions.”

Abandon all hope, ye who enter here flashed through Greta’s mind. Dr. Williams seemed to take her stunned silence as insubordinate.

Look, classes get harder as upperclassmen. You have done exceptionally well prior to today, and I’ve seen no evidence that you need accommodations. You simply need to apply yourself, study more.”

I am applying myself and studying. This isn’t about that.” Greta tried to remain calm, respectful in tone, but found her frustration rising.

Please, Greta, don’t argue with me. I have had students who really needed accommodations and you could tell. You are not such a student. I would have seen it in your performance so far if these supports were necessary for you.”

Greta slumped in her chair. So, because she had performed well when she managed to control her symptoms it meant she couldn’t possibly need accommodations now? But if she’d performed poorly—demonstrating, in Dr. Williams’ eyes, the truth of her disorder—she never would have qualified for advanced courses.

The professor continued, “certainly you understand that it wouldn’t be fair to your classmates, all of whom work hard to meet deadlines and participate, if I let you skip class and turn in assignments whenever it suited you.”

I’m not trying to get away with something. I’m not lazy,” Greta said, louder than she intended. She wasn’t supposed to have to disclose the specifics of her disability, but felt increasingly like she would need to in order to convince Dr. Williams.

Please lower your voice,” he replied. “I am not going to grant these accommodations, Greta. You simply do not need them.”

You don’t see it because I work hard to hide it,” she said, voice shaking but lower-volumed. “I have bipolar disorder. It comes in waves and is especially bad this fall.”

Dr. Williams stared at her. She knew that look, had seen it before in cop drama episodes dealing with a homeless individual presumed to be psychotic, in the faces of people on the elevator when she clicked the button for floor six—the psychiatric floor—on her way to an appointment.

I’ve known people with bipolar disorder, you are not that. I would have seen it. This discussion is over.” He turned in disgust and walked out of the small room.

****

Greta had encountered disbelief—from a couple of high school friends she’d told, from the well-meaning nurse at her primary care doctor’s office—delivered in encouraging tones underscored by a simple, unspoken thought: but you seem so normal. But Dr. Williams’ statements were not encouraging or well-intentioned. Greta replayed each word he spoke, over and over, obsessively ruminating over the dismissiveness and the assumptions underlying his stance. That she couldn’t have bipolar because she did well in school; that she couldn’t have a disability because he didn’t see it; that she was trying to get away with something. And, of course, the core message: if she did have bipolar, she didn’t belong at school.

She had already provided the documentation to the DSO—official diagnosis on a form from her doctor, a record of a hospital stay. What more could she offer? How could she prove her disability affected her if faculty simply refused to acknowledge its existence? Or worse, accused her of wanting an unfair advantage? An unanticipated catch-22. Greta thought about all the effort she’d put into her work, how that hard-won success now threatened to derail her studies. How could she go back and sit in a room, class after class, week after week, with a man who believed she would lie about living with a mental illness for an extension and an excused absence?

****

Ultimately, Greta chose to forego the fight for accommodations in her literature class. Her calculus, business communications, and Roman civilization professors were fine with the supports—neither effusive with encouragement nor resistant to the request—and she hoped to channel the energy she saved by not further advocating her case with Dr. Williams into the work for his class. Her mark suffered, as her reading focus did not recover during term, and needing to complete the work without flexible deadlines led her to submit papers she knew weren’t ready. Better than a zero, she repeated as a mantra, hoping to lessen the sting.

In the final days of the semester, Greta received an email from the DSO, bcc’d along with the other students enrolled with the office. A reminder: make sure to fill out the new semester’s accommodations form with the names and email addresses of your professors! Greta felt anxiety clench her shoulders, back, jaw. She would have to do this each term? Three more semesters of university, another 15 potentially derailing interactions? As she considered the exhaustion settling over her, Greta wanted to be optimistic, but found herself wondering whether university—knowledge—was intended for minds like hers.

Discussion

By presenting both positive and negative experience in one student’s attempt to access accommodations, this story seeks to demonstrate the emotional and practical impact of faculty response—components often missing from more abstract conversations around concepts such as reasonable accommodations—as well as the potential messages of (un)belonging inherent in such interactions. The story also highlights the ongoing, exhausting job that securing supports can be for a student with a psychiatric disability. Fiction rings true when it captures the complicatedness of existence; rather than portraying events and characters as strictly one thing (e.g., universally wonderful or exclusively terrible), a story becomes engaging through complexity (Maslej et al., 2017). The decision to end the story on an ambivalent, even gloomy note did not come lightly, but represented an attempt both to reflect the reality as found in the literature and to show how impactful the accommodations process and a single stigmatizing encounter may be.

As the story notes, everyday language often includes offhand references to mental illness as shorthand for frustrating, annoying, ridiculous, or out of control. These microaggressions may even be used—with or without realization of the internalized stigma—by disabled individuals (Kattari et al., 2018). Kattari et al. (2018) noted that "people with invisible disabilities or illness may be more likely to experience ableism indirectly" (p. 479), as others around them might not temper their ableist language in the same way they would with someone who is visibly disabled. The story demonstrates the conflict of recognizing how embedded ableist language is in culture and struggling to resist employing it, even while hoping to pass as belonging in the ableist society.

The story also contributes an embodied examination of the catch-22 of attempting to access services when others are in charge of determining whether a person is disabled enough to qualify for accommodations (Kattari et al., 2018). This quandary—passing as abled may allow access to spaces otherwise exclusionary, while passing too well may result in others disbelieving the need for accessible spaces—may necessitate an ongoing internal negotiation of disabled identity. When occurring within the context of educational spaces, with social pressures to appear on-track and neoliberal pressures to produce, a student may be left debating the return-on-investment (to put it in society's capitalist terms) of (not) passing, taking into account the substantial effort passing may entail. As the story illustrates, for a student with an episodic psychiatric disability, in which symptoms may come and go, the relationship to asking for accommodations and to identifying as disabled may be particularly fraught. Encountering disbelief about a disabled identity reflects the enduring nature of ableist discourses—that there is a narrow and stereotyped way to be disabled, a single experience that others should be able to see to verify the individual's experience.

Ultimately, this research story was produced from a place of hope: that engaging with fiction that highlights the emotional, embodied experience of navigating the accommodations process in higher education will lead professors and other university community members who are entrenched in rigid notions of performativity to question their held ideas and understand the power they wield to affect students’ experiences of belonging in higher education. Fiction-based research offers its practitioners the ability to highlight the feeling of an experience, "to access and express aspects of the human condition that may otherwise be out of reach" (Leavy, 2012, p. 252). For individuals, including members of the postsecondary community, who have not experienced mental illness themselves or had a close relationship with someone with a psychiatric disability, inhabiting the life and emotions of a character with bipolar disorder may help to build empathy and understanding. Sandhu et al. (2019) found that contact with individuals living with a mental illness contributed to lower explicit and implicit stigmatizing attitudes. In the absence of direct contact, I suggest that stories such as the one above might bring to life research data about lingering stigma in academic systems, making the data more affecting than the brief quotes often included in reports of research findings, and serving as a complement to more traditional academic articles. In other words, fictional representations that incorporate embodied details and present data in story format may broaden the reach of research.

The key stakeholders (Leavy, 2016) for this article's story are educators, particularly those who may not yet recognize the impact of their held beliefs about accommodations on the students they teach. Through the fictional representation of both autoethnographic writing and published literature, I emphasized the emotional disruption of encountering ableist attitudes in academia and the destabilizing effect of being told a disability that significantly impacts daily life is not valid, but rather an attempt to gain an advantage. The story adds to the literature on psychiatric disability in higher education by presenting data in an emotionally evocative manner and highlighting the complex and exhausting process of navigating both the accommodations system and the individual disabled identity. While I intend future fiction-based research to offer speculations for a more inclusive university, this story attempts to move toward social justice through calling attention to moments of opportunity in the existing system—interactions that can lead to a sense of belonging or exclusion.

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