By Kim Clark, Kate Mahoney, Sam Schneider, Anika Sebudde and Andrew Walsh (Department of Anthropology, Western University)

What is the impact on disabled university students of the everyday practices of instructors and other institutional actors? What enhances access and what inhibits it? Our summer 2022 team research project engaged anthropological perspectives to gather insights from disabled students about their lived experiences of study at Western University. With the rush back to normal as early pandemic protections were lifted, it was urgent to learn from disabled students about their experiences of the adjustments made to delivery of so many university services. Our research was also informed by the sense that in the aftermath of the pandemic, we will only see more, not fewer, university students (and staff) with disabilities. Our open-ended qualitative survey attracted 83 responses, and 15 students volunteered for interviews because they had more to say.

Our team lead, Clark, is a political and historical anthropologist who initiated this project as a result of observations in her role as Social Science Assistant Dean (Equity, Diversity, Inclusion and Decolonization). She noticed that disability often dropped off EDI-D conversations on campus, possibly because the existence of campus accessibility services suggested that disability issues were already being addressed. Mahoney, Schneider and Sebudde joined the project as undergraduate research interns with knowledge of disability experience. They helped shape the survey and carried out the interviews with student peers, as well as contributing to the writing of this commentary. We co-designed the research, and their participation is what made it possible to gather so much data so quickly. Walsh contributed to all stages of the research and led methods training for the team.

How did anthropology inform our work? First, our focus was on everyday practices, including small decisions or omissions that could have a significant impact on students. Our goal was not to evaluate the services offered by the accessibility office, but rather to understand the contributions (intentional or not) of a wide variety of people to campus accessibility. Second, we did not assume we already knew what would constitute access, or lack thereof, for students with different disabilities. Our survey included text boxes where participants could identify a practice that makes courses accessible to them and elsewhere, what inhibits accessibility given their specific circumstances. We also asked what, outside of classes, makes them feel they belong on campus (and again, what does not). While we knew this design might discourage students from responding, in fact they provided rich responses to these questions, and we would not have predicted some of their insights. Third, we approached disabled students as experts on what would make the university accessible and welcoming for them, and indeed as experts on how the university functions. Here we were inspired by the institutional ethnography approach of Dorothy Smith.

By inviting participation from any student who self-identifies as disabled, we were able to learn from those who are not registered with accessibility services and those who do not have a diagnosis. While our survey respondents do not constitute a representative sample (indeed, there isn’t sufficient clarity about disability on campus to even know what such a sample would look like), we did get responses from every Faculty on campus and every level of study. Additionally, the composition of our study participants itself revealed that there are more disabled students than we know and than we see. For instance:

• One quarter of our participants have undiagnosed disabilities (sometimes due to barriers in accessing specialists or paying for testing).
• One third of participants are not registered with accessibility services.
• Only 2 of 83 participants indicated that their disability is visible, while another 17 have both visible and non-apparent disabilities. The remaining 64 (77%) consider their disability non-apparent.

We also learned about the profound “access fatigue” – exhaustion from fighting for accessibility and/or accommodations – that our participants experience. Almost 20% experience this fatigue “always,” another 20% “at least once a week,” and a further 23% experience it once or twice a month. Disabled students are exhausted – and registering with accessibility services did not solve access fatigue, as students reported they still had to negotiate their needs, repeatedly, with individual instructors. Some students indicated that group projects in courses forced them to disclose private health information to their peers. 

Some students also reported that their symptoms ebb and flow or affect different parts of their bodies in different moments, which contributes to making it seem like they are “faking” it. One participant explained “I care deeply about school and feel very sad when I am accused of slacking off when, in reality, I also want nothing more than to feel well enough to attend class.” Contrary to the assumption that they are trying to get an easy ride – an impression our participants were painfully aware of – students with disabilities often must work much harder to access course materials and activities. When readings are offered in non-accessible formats or students are not permitted to use their devices in class, they end up paying a kind of “crip tax” in extra effort. The concept of crip tax is used to highlight the extra expenses that disabled people incur, but we saw it too in the extra work required of them.

Study participants explained they took the time to respond because they hoped their experiences could help make change. One interviewee, in a uniquely devastating series of experiences, recounted a powerful story of miscommunication and misconnection at multiple offices on campus – email messages requesting support that went to a spam folder, calls not answered, and even, in a moment of crisis, the campus police service took down their information and promised a follow up that never came. The lack of an integrated system to share information between offices (possibly due to a commitment to safe-guard sensitive information) leaves gaps through which students can fall, and also contributes to the demand that they explain their situation again and again.

In addition, students identified several pandemic adjustments to course delivery and assignment format – such as online classes, hybrid delivery, and flexible deadlines — that made the university more accessible to them and that they hoped would continue. Moreover, the ability for all students to report absences or illnesses without documentation during the pandemic was especially beneficial to students with disabilities whose symptoms could be unpredictable and access to their specialists unreliable. This gave disabled students more autonomy to manage their health, and participants highlighted how this reduced access fatigue. This provision has since been removed at Western, although a replacement is under discussion.

Drawing on a variety of suggestions that appeared in survey responses, we proposed the creation of an app to Western’s Chief Digital Officer. This app would help not only with wayfinding between buildings and rooms, but also indicate where there is construction, when shuttles are coming, what food services are open, locations of elevators, ramps, automatic doors,and accessible washrooms, and more. This is especially important for people with mobility issues who invest more effort in getting around, but other participants highlighted that even without physical mobility challenges, they are often disoriented and turn the wrong way when they leave a classroom or building. An app that includes a button to report “access fails” – automatic doors that aren’t working, ramps needing snow removal, etc. – would be transformative, since few people on campus know how to resolve an issue they may encounter.

While our data analysis and work toward outcomes has just begun, we were struck by the richness of the insights shared with us when we treated participants as experts and, as anthropologists do, did not pre-judge what they might want to tell us.

To give the final word to one of our research participants, pointing to an easy action point: “I am entering 4th year of university this fall and have only ever had one professor ask me if I am okay or need any help.”