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As more students enter higher education with chronic illness, a different kind of learning is required. (mischiru/flickr)

I recently received e-mails from a frustrated graduate student with chronic disease who was tired of administrative roadblocks at her particular school, and a distraught parent of a college student who was about to withdraw from another school because of her health. Both e-mails sought commiseration and advice, and both speak to the same issue: What happens when patients with chronic illness enter higher education?  TWEET

We might know how to accommodate hearing, vision, or mobility impairments on campus, but chronic pain conditions, autoimmune diseases, and rare diseases present very different challenges. Consider the student suffering from flares of Crohn’s disease or lupus, who may appear healthy one day, but whose symptoms are completely incapacitating the next. How do we accommodate students who can’t make it to class for longer stretches, have frequent medical appointments or disruptive hospital stays, or whose medications may make them drowsy or fatigued even when they are present?

Illness isn’t a free pass for incomplete work; it’s an extenuating circumstance that requires negotiation and mutual accountability.

It’s a shift that is taking place across the medical establishment as the population of younger adults with chronic illness continues to grow and we’re confronted with patients who need adult care and who are transitioning into independent management of their conditions. Thanks to better technology and treatments, pediatric patients with serious childhood illnesses like cystic fibrosis are living longer into adulthood, and at the same time, more young adults begin to manifest autoimmune and chronic conditions at this stage in their lives. According to a National Health Interview report, an estimated 7 percent of American youth live with at least one ongoing health condition that disrupts daily activities.

The very nature of chronic illness itself — it is largely invisible and unpredictable — is at the crux of the problem. Students with chronic illness are often grouped with students with learning disabilities or permanent physical disabilities, despite the differences in their needs, and in some situations, students and instructors are left to devise ad hoc policies.

I know firsthand how important disease education and communication are to this dynamic. As a lifelong patient, my entire student career took place within the context of serious illness, a relentless cycle of missing classes and catching up. I wrote papers and studied for exams from an ICU room, I chose courses based on how well they fit in with daily treatments, and I picked student housing based on its proximity to medical care. I was fortunate to have faculty and administrators who learned with me and worked with me, and I made it through. As a college writing instructor, I’ve seen a lot from the other side of the desk, too, from the panicked e-mails and queries for extensions from students and advisors to coordinating ongoing one-on-one help for students with medical challenges.

What might more robust administrative support look like? In 2003, DePaul University in Chicago launched the Chronic Illness Initiative (CII) through its School for New Learning. The now-defunct program served as a liaison, educating faculty about chronic illnesses and working with students to establish and maintain realistic timelines to complete their education. Withdrawing from classes not only slows down academic progress, but can also put students in financial aid jeopardy if they drop down to part-time status.

There is much we can extrapolate from this model. First, students with chronic illness need to advocate for themselves. If I know there is an ongoing medical situation, I can help formulate a plan that minimizes stress and allows students to focus on their health first. Understandably, not all students want to disclose illness or register with disability services and be thrust into the role of educator, but with documentation, instructors have a lot more discretion to help students with illness succeed in the classroom.

For faculty, one of the most difficult challenges is to be accommodating while still maintaining the classroom’s integrity, and the integrity of the student’s education.

What must follow is ongoing communication, particularly if a student’s health status changes significantly. Being proactive also goes a long way; for example, some students struggle with early classes, while others know their fatigue or pain is much worse later in the day and earlier classes are better options. Early or priority registration makes a lot of sense for these students. The upsurge in university-based online courses is particularly promising, since these courses allow students to participate even if their physical symptoms worsen.

For faculty, one of the most difficult challenges is to be accommodating while still maintaining the classroom’s integrity, and the integrity of the student’s education. Working with students to “triage” deadlines and assignments so they can stay enrolled without putting their health in danger in the process is important. Illness isn’t a free pass for incomplete work; it’s an extenuating circumstance that requires negotiation and mutual accountability.

For now, the most important collaboration often comes between individual instructors and students, with that critical moment of translation and acknowledgement. With increased awareness and understanding of chronic illness, students and faculty can better access the administrative structures already in place and hopefully, they can have a larger role in shaping future policies.

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The views and opinions expressed in this piece are solely those of the writer and do not in any way reflect the views of WBUR management or its employees.

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