Back to School: Reflections on a Disabled Undergraduate Experience

Retour à l’école : réflexions sur une expérience universitaire avec un handicap

Danielle E. Lorenz

PhD Candidate

University of Alberta

dlorenz [at] ualberta [dot] ca


Paul D.C. Bones, PhD

Associate Professor

Texas Woman’s University

paulbones [at] twu [dot] edu


Emily King, MA

PhD Candidate

Texas Woman’s University

eking11 [at] twu [dot] ca



This edited collection began as a conversation between the editors and members of the Canadian Sociological Association’s Sociology of Disability Research Cluster. The discussion centered on how there is a wealth of work on the experiences of being disabled in academia from the perspective of faculty (such as excellent works by Margaret Price and Jay Dolmage), but there are far fewer accounts of what higher education is like for undergraduate students. This is surprising, given how reliant we academics are on undergraduates for our research studies. Although all disabled academics were at one time undergraduates, not everyone of us was disabled as an undergraduate, or identified that way when we were in university (or college, for us American folks). In fact, although all three of us guest editors had limiting conditions as undergraduates (including major depression, anxiety, limb difference, developmental conditions, and chronic pain), none of us considered ourselves disabled at the time. Or, to expand a little, none of us considered ourselves “disabled enough.” This is common for individuals with an invisible disability (Guevara, 2023), and—as you will read in these pages—often a part of a disabled undergraduate experience. Accepting oneself as disabled can be a long, nonlinear, and often painful process, marked by moments of clarity alongside extended periods of self-questioning and doubt. For many, this process involves grappling with internalized ableism, the weight of societal expectations, and a constant reevaluation of how we see ourselves in relation to our peers and universities, and our place in society. It is not a single turning point but a process of gaining understanding and self-negotiation—sometimes private, sometimes public—that often takes years to understand and continues as an ongoing process of self-understanding across many disabled peoples’ lives. “Disabled experiences” are so very interesting because while we can vary so widely in our diagnoses, the way individuals and institutions respond to us tends to cluster. The goal of this special edition was to examine both personal narratives and more traditional academic research on disabled undergraduates, in hopes of delineating these clusters of disabled experiences. Invisibility and internalized ableism, being just one of these common experiences. For some disabled academics, this journey of self-recognition and acceptance becomes a catalyst for political activism, with classrooms serving as spaces of transformation. Here, lived experience is woven into curriculum design, class discussions, and mentorship, turning pedagogy into a site of resistance against exclusionary structures and an active reimagining of what higher education could be if disability were seen as a source of insight and change rather than a problem to be managed. On a personal note, one of our greatest hopes in preparing this special collected journal edition is that students like us, who were disabled but struggled with internalized ableism, will see themselves in these pages.

Although rarely mentioned in university/college recruiting reports, disabled students comprise a significant part of higher education attendees. Roughly 22% of first-year students in Canadian Universities (Canadian University Survey Consortium, 2019) and 20.5% of undergraduate students in the United States (National Center for Education Statistics, n.d.) have some kind of disability. This is a figure that has risen over time, and has occasionally been referred to as a social problem or a crisis (Bell et al. 2019; Schweizer et al. 2023), as more and more young people are identifying as having a mental illness or claiming a disabled identity (Eyer, 2021; Smith and Mueller, 2022; Lambert 2024; Statistics Canada 2023). This is not a new moral panic—not in the States at least—but one that dates back to the 1990s, as one of the major “tests” of the Americans with Disabilities Act (ADA) was its relative effect on workplace participation versus higher education enrollment (Bones and King, 2025). This period was punctuated with scores of research articles questioning the value of higher education for disabled students compared to the idea of “liberating” disabled people from social safety nets (Bones and King, 2025). Disability is also strongly associated with atypical educational pathways. Many disabled students take longer to graduate, move between part-time and full-time enrollment, or shift academic focus entirely as they balance health needs, accessibility issues, and unpredictable institutional support (Carroll, Muller and Pattison, 2016; Fox et al., 2022; Gull, Kaur and Basha 2025; Knight, Wessel and Markle, 2018). These paths are rarely acknowledged in official narratives of student success, yet they reveal the resilience, adaptability, and creativity required to navigate an education system not built to accommodate disabled bodyminds. Questioning your worth, as a student and a human being, is another disabled experience you will read about in this volume.

From an intersectional perspective, disability adds a great deal of uncertainty to an already tumultuous period in the lifecourse. College/university is already a time where students must learn new routines, experience new locations, take responsibility for oneself, and focus on growing their futures. Disabled students must do all these things, plus deal with a host of new social barriers. These can range from having professors question their accommodations to learning firsthand how inaccessible a “historic” campus can be. The economic and time burden of being a disabled student cannot be overstated. There are the direct financial costs—assistive technologies, medical care, accessible transportation and living spaces, medical tests to prove disability—and the hidden costs, such as the unpaid labor of navigating bureaucratic systems to gain access to needed disability accommodations (Fox et al., 2022). This constant trade-off between time, energy, and money shapes academic and personal life in ways nondisabled peers rarely understand. The inaccessibility of university campuses physically and intellectually are significant barriers for disabled students and is captured differently in each of the articles in this edition. And for some of us, it is the first time we are being confronted with the idea of being disabled and how that impacts our lives. For many, this realization prompts a push for accommodations that are not only technically compliant but truly individualized and designed to reflect the unique interaction between a student’s disability, their chosen discipline, and the demands of academic culture. Such person-centered supports can mean the difference between dropping out of degree programs and meaningful participation in academics for disabled students. The readings in this special edition capture many of these experiences firsthand: they ask the readers to learn and grow with the authors as they recount how they experienced higher education while disabled and how education influenced their understanding of living with disability.

What follows is a mixture of elation at the opportunities of university/college combined with the frustration of inaccessibility. Which, essentially, is yet another disabled experience. One thing readers will note is that the authors in this edition have no problem calling out the injustices they faced as disabled undergraduates. These injustices include needless ableism and exclusionary practices—formal policies, unspoken cultural norms, and day-to-day interactions that systematically push disabled students to the margins of academia. Sometimes these are overt, like denying a needed accommodation or inaccessible buildings, and sometimes they are subtle, like standardizing disability accommodations as one size fits all or assuming disabled students are less capable. Regardless of form, they erode belonging and limit full participation. Many of the authors are hard on universities. And that’s fair because, as disabled academics, we know how much power the institution has over us and over our experiences. We also know that disabled people must be central voices in defining disability itself and in shaping the narratives about what it means to live, study, and work while disabled. This desire to share our painful experiences within academia is a uniting feature amongst the readings, and one readers may strongly identify with. At the same time, in the United States and Canada, the academy is under political attack. There’s so much focus on the neoliberal aspects of education (the link to high-paying jobs and “real research”), that the core foundations of a liberal arts education are being stripped from under our feet. We hope that readers can remember the political reality of higher education alongside the lived reality of being disabled in academia at the same time. Disabled students, largely, love higher education. Because so many of us have lionized or elevated academia as this wonderful place where we can be “equal” and we can shine without being defined by our deficits. But that’s not the reality we are faced with when we cross that threshold. Instead of a magical world of access and inclusion, we encounter doubt, suspicion, hardship, and eugenics. And it does not need to be that way. The powerholders within these institutions have the ability to craft policies and offer access, but too often they fall back on the same ideas about who “belongs” in education. This does not precisely mirror the same external pressures faced by the University, but it is instead part of the same process of defining the academy in strict authoritarian terms that schools themselves are currently dealing with. It’s part of the same process that threatens academia as a whole, and we (instructors) all too often are compliant in creating this narrow environment of exclusion.

Further, there is a growing but still divisive visibility of disabled academics within higher education, one marked by a clear gulf between those who are out about their disabilities and those who are not. Academics who publicly identify as disabled often do so as a political and scholarly act, using their lived experiences to inform their research, teaching, and institutional advocacy. For many, teaching is more than a professional responsibility, it becomes a deliberate enterprise of activism. We use our classrooms as places of inclusion, spaces where ableist assumptions are challenged and where students are invited to imagine a more accessible future for all. By integrating activism into pedagogy, these academics model how scholarship and political engagement can work hand in hand to disrupt the status quo. While this openness can create opportunities for solidarity, representation, and critical scholarship, it also carries risks—such as ableism, stigma, and career vulnerability at all stages (Bruce & Aylward 2021; Dolan 2023; Gillberg, 2020; Price 2014). And these risks understandably discourage many disabled academics from disclosing. Remaining silent about being disabled serves as a form of protection, but at a cost. And it reflects the deeply entrenched ableism within academic spaces that demand hyper-productivity, disembodiment, and conformity (Price 2014). Further, holding a public disabled identity (or holding a non-disabled public identity) is not equally accessible to all and is highly influenced by the nature of one's impairments, the field of study, and intersectional identities. This divide underscores the continued need for structural change within academia that not only accommodates but values the diverse ways disability shapes knowledge production within all aspects of academic work/life.

Still though, this does not erase the promise of higher education and the value that it holds, especially for disabled students who may have been told their whole lives that they could never make it. Education continues to hold the promise of hope: hope for a better understanding, for economic prosperity, and most of all, for more inclusive educational practices for all students and academic faculty/staff.

Introductions

Before we introduce the readings, let us introduce ourselves. Danielle E. Lorenz (she/her) has congenital and acquired disabilities, while also being a dynamically ill PhD candidate in the Faculty of Education at the University of Alberta. Her primary academic focus is settler colonialism while also focusing on Indigenization. Paul D.C. Bones (he/him) is a multiply disabled associate professor of Sociology at Texas Woman’s University in Denton, TX. He primarily works in the area of critical disability studies but also has an interest in cultural sociology. Particularly, he is interested in social definitions of deviance as they relate to disability and horror films. Emily King (they/them/she/her) is a Mad disabled PhD candidate in Sociology at Texas Woman’s University, with a strong focus on social justice and resistance to medicalized and pathologizing narratives about disability.

It is our pleasure to introduce you to the work of the authors of this special edition of CJDS.

In “Mad, Maddened, and Maddening: A Mad Duoethnographic Exploration of Undergraduate Education,” authors Adam Davies and Kathleen Clarke explore Mad identities, maddened subjectivities, and maddening higher education through their co-written article.

Marivete Gesser, Valéria Aydos, Pamela Block, and Alice Steele Santos Escada consider the implications and intersections of ableism, sexism, and racism in the academic trajectories of Black disabled women in Brazil in “Ableism in the Academic Trajectories of Black Disabled Women: An Intersectional Analysis.”

Emily King takes an autoethnographic approach to their experiences as a disabled undergraduate. “Internalizing Disability: If I Tell You, Will You See Me?” tracks a personal journey from disability onset, to disability rejection, and ends with disability acceptance. The article critiques the medical model of disability that so many disabled undergrads must contend with.

In “Access Denied: Eugenics, Neoliberalism, and the Persistence of Ableism in University Education,” Hussain Alhussainy examines the historical impact of eugenics on Canadian post-secondary institutions. Utilizing the concept of the asylum, he explores how these distal forces continue to impact disabled undergraduates through casting doubt on accommodations, distilling individuals down to their “value,” and creating an environment that is not designed to handle a diversity of bodyminds.

Joanna Lea Tucker-Perkins considers how college campuses can be locations for positive social change and crip community creation in “The Crip College Experience as a Model for Accessible and Affordable Community Creation.” In this reflective piece, Tucker-Perkins charts her course as a non-traditional disabled single mother in the university, and how she envisions the future of disabled education clashes against its past. She also envisions how the contemporary political climate in the United States will affect disabled people through existing laws (such as the Americans with Disabilities Act) and accessible pedagogical strategies (like Universal Design for Learning).

In “Transforming Undergraduate Education from Below. How Students Make Disabilities Visible and Universities a Working Space for Themselves,” Lisa Pfahl and Theresa M. Straub investigate the experiences of disabled undergraduate students in Germany and Austria. Taking a constructivist approach, the authors inspect how undergraduates come to self-identify as disabled, and how universities can promote programs that aid in this transition. They note the relative importance of social factors and events occurring prior to entering post-secondary education, while also stressing the need for institutions to be proactive in removing barriers to inclusion.

Rosadene David examines the intersectional barriers faced by neurodivergent students who speak English as an additional language in Canadian Universities in her study, “Intersections of Ableism and Linguicism: Stories from Neurodivergent Undergraduate Students Who Speak English as an Additional Language.” Drawing on narrative case studies with two students, David highlights both the economic promise of higher education and the barriers that arise when ableism, linguicism, and racism intersect to shape access to education. Emphasizing the value of disabled and intersectional knowledge and the importance of including diverse disabled accounts, the article calls on educators and institutions to dismantle exclusionary practices and foster more equitable learning environments for all marginalized students.

In “Autistic Students’ Experiences of Access: Navigating University in Canada,” Kathryn Urbaniak and Miranda D’Amico explore how autistic students navigate access in Canadian Universities through qualitative interviews. Authors discuss autistic students’ perspectives on disclosure, stigma, and the invisible nature of autism, as well as the emotional, social and practical challenges of seeking accommodations. Additionally, the article considers how questions of being disabled enough, self-accommodation and the formation of disabled identity shape both barriers and opportunities for success in higher education.

In her mixed-methods study, “(In)visible Journeys: Experiences of Students with Disabilities,” Alfiya Battalova considers the experiences of disabled students at a small Canadian University. Drawing on surveys and focus groups, the article considers how attitudinal and systemic barriers shape access, while students navigate the (in)visibility of their disabled experiences, accommodations, and the need for self-advocacy and self-accommodation. The study emphasizes the need to center disabled people’s voices in defining disability and calls for a more person-centered and individualized approach to disability accommodations for university students.

Acknowledgements

We would like to thank the authors, reviewers, and journal editor Jay Dolmage for making this special edition happen. We could not have done this without your support.

With care and in solidarity, Danielle, Paul, and Emily

References