College Disability Staffers Seek CFIDS Information

By Katherine Schwille

Originally published in Youth Allied By CFIDS, Winter 1997

An organization of college staffers who provide disability services asked The CFIDS Association of America to send a speaker to its annual conference last September.

"We’re seeing more students show up with this and we aren’t quite sure how to accommodate them, when faculty are coming to us with issues about attendance," said Thomas Jaynes, president-elect of North Carolina Association on Higher Education and Disability (NC AHEAD) and organizer of the conference. "We wanted more information."

NC AHEAD is a new organization that represents about 150 institutions, or a third of the colleges in the state. About 75 people attended the conference at Appalachian State University in Boone, NC. About 35 people crowded into one of the concurrent sessions to hear about CFIDS and what might be done for students who have it. Organizers had specifically asked for a speaker with the illness, so I talked first about my 10-year battle with the disease.

As an overhead projector displayed a list of symptoms, I described my experiences with them. I explained how the loss of concentration had affected me even that morning as I’d given up trying to review my notes at breakfast because of the bright lights and quiet chatter in the dining room where we’d all eaten.

Questions from the group reflected a sincere desire to help, but also the pitfalls for disabled students trying to fit into the sometimes-rigid world of academics.

Jaynes said the group would like students with CFIDS to know how much interest there is in helping them. "My suspicion is that people with chronic health problems are less likely to seek services from traditional services for the disabled because they think we’re geared just toward people who are blind or deaf, for instance. But we’re here to accommodate all kinds of disabilities."

Jaynes said the "distance learning" technology that’s used at community colleges is one way to help students with CFIDS. It’s not uncommon, he said, for someone in Asheville to want to take a class offered at Durham Technical College more than 200 miles away. "That person sits down in front of a TV and actually talks to the instructor and takes part in the class through the television." Jaynes said. "The same technology works for someone whose health is impaired."

With the help of The CFIDS Association, I provided the group with a list of some of the ways disability staffers might help students with CFIDS. Encouraging instructors and administrators to be flexible is the first step. Students with CFIDS may need:

• To attend school part-time, skip a semester or delay graduation
• To take lighter loads and more classes on a pass/fail basis
• To be given alternative assignments, such as papers instead of tests
• To be allowed to miss more classes than average
• To be permitted more visits with instructors during office hours
• To be provided disabled parking or special transportation
• To tape classes — those they attend and those they miss

I suggested that students should be allowed to substitute classes where memorizing is less of a requirement. Independent study programs and correspondence classes are more suited to the reality of CFIDS than those which require regular class attendance.

Many of the staffers who attended the conference represented community colleges, where the endurance of commuting students becomes an issue. I suggested they help students with CFIDS find places to lie down or take breaks between classes — even during class if necessary. Instructors should allow students with CFIDS to work alone if they wish, rather than in groups, which often create exhausting and confusing over-stimulation.

For students who live on campus, a private dorm room and quiet study area could be essential. Many students with CFIDS will need a college life with the least amount of walkinginvolved — convenient parking, convenient food, bathrooms and, if necessary, special transportation between buildings.

And like all students with disabilities, they need counselors who understand the stresses that come with trying to balance illness and life.

After my talk the disability staffers asked a few good questions:

"What about a student whose parent insists she has CFIDS, but no doctor has been found to diagnose it?" My suggestion was, why not believe her for now and press her to keep looking for a competent doctor — perhaps with the help of The CFIDS Association and a local support group.

"What career advice do you give a student with CFIDS?" This one was so tough, I was hesitant to give an answer. Thinking about my own struggles over this issue, I offered suggestions about computers, flexible hours and working at home.

"What about instructors who insisted class attendance was mandatory?" Flexibility must be encouraged — or required, I said. But Jaynes’s comments after the conference offered more hope. "With distance learning and other technologies, that’s no longer an issue," he said.

Kathryn Schwille was an editor at The Charlotte Observer when she was disabled by CFIDS in 1987. She is a former member of The CFIDS Association of America’s Board of Directors.