As appearing in CHHS.source.colostate.edu| March, 2023 | by Ethan Dvorak
School of Education fellowship recipient works to expand understanding of disability ‘apparentness’
How do we perceive dis/ability in others? Autumn Wilke, a Ph.D. student in higher education leadership at Colorado State University’s School of Education, is exploring how perception of a person’s dis/ability is not limited to visible and invisible traits, and how it can be influenced by context, environment, and interaction.
Wilke’s research revolves around developing a scale to better understand the “apparentness” of disabilities – how disabilities are addressed and recognized, both in society and by higher education institutions.
“Disability literature in higher education often reduces discussion of disability experiences to either visible or invisible,” Wilke said. “However, the reality is much more complex and contextual. My research hopes to shift understanding of apparentness to consider a spectrum of experiences that are influenced by environment and interactions.”
To create the scale of disability apparentness, Wilke conducted interviews and focus groups with disabled students to begin to understand various environments, interactions, and other factors that may influence experiences of apparentness.
The scale of disability is used to gauge the range of apparentness present among disabled communities (moving beyond visible and invisible) and how disabled students have experienced apparentness of their disability. Wilke’s hope is build upon this ongoing scale research to be able to inform practices in higher education that currently limit the care individuals receive.
Now, Wilke has been awarded the S-JEDI Fellowship from the CSU School of Education for her research and dedication to diverse education. The JEDI principles – justice, equity, diversity, and inclusion – are predicated on not just practicing diversity but making diversity a central theme in the workplace, in education, and in life. Wilke silhouettes this ambition in her research.
Wilke was drawn to pursue her doctoral degree online with CSU’s School of Education due to its focus on DEIJ principles and flexible program structure.
“I focused on CSU for three reasons: the emphasis on a variety of inclusion and social justice topics among faculty research interests, the opportunity to engage in rigorous doctoral work while continuing to work full-time at my current institution, and the strong cohort model with synchronous engagement,” Wilke said.
Research based on experience and dedication
Wilke’s own lived experience as an individual with a disability was the inception of her research interest in how the apparentness (or lack thereof) of a disability can change the way individuals are treated by society and higher education institutions.
“Disability is a prominent experience of both my personal and professional life and my current focus on apparentness of dis/ability has grown from my prior life experiences,” said Wilke. “When I first entered the doctoral program at CSU, I had intended to pursue a research topic related to how students with disabilities conceptualize success. However, as I progressed through coursework, I became more interested in critical legal approaches to thinking about disability and the ways that legal protections are often tied to subjective measures of disability.”
Wilke is currently the associate chief diversity officer for disability resources at Grinnell College, working to support faculty, staff, and students with disabilities at Grinnell.
Wilke’s own experiences allow her to be more conscious of the complexities surrounding disability apparentness. Because of this, Wilke ensured that her research was guided by discourse with students who have disabilities.
“Accessibility and the input of students with disabilities have been key elements of my process so far because I want to ensure that I am not limiting my exploration of apparentness to what I have learned from my own experiences with disability,” she said.
Recognition of disabilities in higher education
Through her time at Grinnell College and five years of doctoral work at CSU, Wilke has worked to address and reconcile how disabilities are acknowledged – or not acknowledged and miscategorized – in higher education.
“Higher education disability resource offices are based off a highly legal and medical model of understanding disability. This means that there are often rigid documentation requirements to access accommodations and the emphasis for understanding the impacts of the disability is placed on medical expertise rather than on information given by the individual about how they experience their disability on a day-to-day basis,” said Wilke.
Widespread misunderstanding of disabilities in higher education is paired with a lack of resources. “There are currently only 11 disability cultural centers associated with institutions of higher education in the United States and disability support offices rarely have the staffing or budget to support education, programming, or community-oriented projects.”
This means that students navigating disability as an identity often receive little support in that exploration and experience barriers in finding and meeting other students with disabilities.
Researching the student experience
Wilke’s research seeks to address legal models of disability apparentness and to further understand the complexities of cultural effects on it.
From this research, Wilke has constructed two hypotheses. The first revolves around the relationship between race and experiences of apparentness of disabilities – especially for students in predominately white institutions. “In many of the interviews, students shared that standing out on campus for a reason other than disability often served as a catalyst for their disability to be made more visible,” Wilke said.
The second hypothesis, Wilke said, is conducted by “using a number of common micro/macro-aggression experiences encountered by participants (e.g., ‘you don’t look disabled,’ mimicry of movement or speech, etc.) to see what frequency of experiencing micro/macro aggressions or ableism reveals about apparentness.”
Wilke also coauthored the book “Disability in Higher Education: A Social Justice Approach.”
“The intention was to provide an easily digestible and comprehensive guide for individuals working on college campuses to better understand the experiences of people with disabilities and to examine their role in higher education as critical to helping ensure access – regardless of the functional area where they worked,” Wilke said.
Wilke’s book and dedication to researching disability apparentness has earned her the S-JEDI Fellowship, and her work will continue to influence educators and contribute to a better understanding of the experiences of people with disabilities.
“I am honored that the school of education S-JEDI committee sees the value of my scholarship,” said Wilke.