Study Overview
During Winter 2021, DRC MSW Intern, Lizzie Allen, conducted an assessment of DRC services to answer the following questions: What are the experiences of chronically ill PSU students with the DRC, and what more can the DRC do to improve their experiences?
Lizzie is a chronically ill/disabled student passionate about making PSU more accessible for fellow chronically ill students. “I have been fortunate to share my experiences with chronic illness and higher education with DRC staff, but I wanted to hear what other chronically ill students have to say to diversify our feedback”, said Lizzie.
Lizzie conducted four focus groups and two individual meetings throughout Winter term, under the supervision of DRC Director, Jen Dugger. After finishing the groups, Lizzie wrote up her findings and shared with the DRC professional staff team. The DRC team plans to review the recommendations and make plans for improvements throughout Spring term.
Methods
At the beginning of Winter term, DRC students who self-identify as chronically ill were invited to participate in the focus groups via email. The DRC provided $25 gift cards to the 16 students who participated. Participants ranged in age, level in school, degree type, gender, race, ethnicity, sexual orientation, parental status, how they identify with their illness/disability, how often they connect with others who have disabilities, and how important disability community is to them.
Lizzie conducted four 90 minute focus groups and two individual meetings throughout the term. In each session, participants answered 10 questions about their experiences at PSU. Questions focused on accessibility of PSU, identity and belonging at PSU, experiences with the pandemic and remote learning, experiences with the DRC, challenges of managing chronic illness as a student, and hopes for future advances in accessibility at PSU.
All meetings occurred over Zoom, and recordings of the sessions were used to transcribe meetings. Using transcriptions of the sessions, Lizzie highlighted common themes and findings to share with the DRC team.
Findings
One of the most common findings from the groups was a feeling that chronic illness created a sense of loneliness and isolation, and that the pandemic intensified these feelings. Participants across the groups talked about how friends, family, classmates, and instructors lacked the ability to understand their experiences with illness, especially with illness that is not immediately apparent or visible.
Many participants voiced frustration with unaccommodating instructors, stating that they specifically take classes with instructors they know will accommodate them. Problems with instructors contributed to a feeling of not belonging at PSU for several participants. This lack of belonging stemmed from feeling unsafe at PSU because they lacked the resources on campus to manage their illnesses; feeling like they had nowhere to rest close to their classes; feeling like people do not talk about chronic illness, which creates isolation; feeling like people misunderstand their chronic illness if they do disclose their diagnosis; and feeling like most people cannot imagine the intensity of the situations they are navigating due to chronic illness and societal treatment of chronically ill people.
In terms of remote learning, participants had mixed feelings. A few participants talked about hating remote learning and eagerly awaiting the return to campus. Other participants talked about loving remote learning and desiring to never attend in person classes again. Most participants discussed the pros and cons of remote learning and advocated for a hybrid model in the future, which would allow students the option of either attending class in person or staying home. Immunocompromised students expressed concern that they would not be ready to return to campus in the Fall, and felt ignored by university plans that stress returning to in person learning. Several participants also stressed that, due to their illness(es), they are safer and more productive at home where they have everything they need to take care of themselves. A few participants stated that “remote learning really saved my education.”
Where We Go From Here
Moving forward, the DRC hopes to create more opportunities for connection among chronically ill students at PSU. Several of the focus group participants have created a discord server to connect (please email elallen@pdx.edu if you are a chronically ill student and would like to join!), and the DRC recently hosted an event called BIPOC & Chronically Ill: A Conversation with Indigenous Chaplin Melissa Bennett.
DRC staff are working to carry the momentum from this event forward to support chronically ill students. Simultaneously, the DRC is working with the PSU administration to accommodate immunocompromised students as the university begins to reopen, and is exploring the creation of remote accommodations for students whose illness(es) make in-person learning difficult.
The DRC plans to update our syllabus statement to explicitly highlight that the DRC serves students with any kind of disability or condition, including invisible illnesses. The DRC wants students who live with chronic or prolonged illness to know that disability accommodations and support are available to them. The DRC also hopes to continue hearing student feedback, so that our services center the needs of all students with disabilities. During Spring term, another social work student will conduct focus groups with autistic PSU students.
DRC staff and interns celebrate the advances in accessibility, as well as the new accessibility measures that have emerged during the pandemic. However, we also know much work remains in creating disability pride and chronic illness community on campus. The DRC is committed to working with our students toward progress and justice.
DRC staff dream of a day when Universal Design for Learning and greater appreciation for illness and disability make PSU so accessible that chronically ill students get to learn and succeed at the same rates as their peers. Lizzie told participants, “I know we have made progress, but that many barriers still exist for those of us with chronic illness. I hope someday reaching graduation as a chronically ill student doesn’t feel like a herculean feat, and commend you all for your perseverance.”
If you are interested in registering with the Disability Resource Center, you can complete the application here and we will reach out to you immediately to schedule an appointment. If you have any questions at all, please contact our office at drc@pdx.edu or 503-725-4150.