Invisible disability

Getting through college is never easy. But as Emily Heyward knows, living with an invisible disability can make it even harder.

Heyward spent two years at Spelman College before having a mental breakdown. She spent about a month in a psychiatric facility battling severe depression, anxiety and post-traumatic stress disorder. In 2015, she transferred to Stony Brook University, where her grades dropped to a near failing point. It was then that she was diagnosed with dyslexia and attention deficit disorder.

Despite these obstacles, Heyward earned her Bachelor of Science in Technological Systems Management this past May. Now she is working towards her master’s degree and plans to go for her Ph.D.

But making it through college with psychiatric and learning disabilities isn’t easy. Stony Brook University’s Disability Support Services (DSS) worked with Heyward to determine what accommodations she should be able to request. For her, some of those include deadline flexibility and a copy of PowerPoint lecture slides. And while her professors are often very supportive, not all are so willing to comply.

“When people think of disabilities, the first thing they think about are physical disabilities and they almost completely forget about the mental disabilities,” she said. “I think that’s one thing that people completely ignore, because if someone were to look at me they wouldn’t think that I’m disabled.”

Heyward is one of an estimated 74 percent of disabled people who do not use an object, such as a wheelchair, that makes their disability apparent to those around them. And while great strides have been made, accommodating students with so-called “invisible disabilities” is still something that colleges struggle with. Some faculty members can feel unsure of how to accommodate these students, or reluctant to honor requests.

This issue becomes more crucial as college enrollment rises. According to the National Center for Education Statistics, as of 2012, 11 percent of undergraduate college students reported having a disability. And even if that percentage continues to hold steady, college enrollment has increased overall since then. So colleges across the board can expect to see more disabled students on their campuses, and many of them won’t be visibly disabled.

“There are tons of people with invisible disabilities in academia,” said Dr. Pamela Block, the director of the Disability Studies concentration at Stony Brook University. “But they’re passing. They’re hiding it. So the students don’t know that they’re there. So they’re treated like this is a strange and rare thing when a student has these issues.”

Some invisible disabilities include chronic pain or fatigue, learning disorders, certain mental illness and many more. The symptoms and limitations of invisible disabilities can often be misunderstood when the person exhibiting them appears healthy and able-bodied. For instance, the fatigue someone with chronic fatigue syndrome experiences can be fundamentally different from the fatigue an able bodied person experiences at times, even if they look the same from an outside perspective. When something like this happens, the need for assistance may seem unnecessary to some. Other times, faculty members may feel that accommodation requests impede on intellectual property rights, particularly if they designed the lecture notes or slides themselves. These are only some of the obstacles that can stand in the way of a disabled student’s access to assistance.

But even when faculty members are not educated on disabilities, colleges like Stony Brook have qualified advisors who can determine what accommodations these students need. However, this does not always mean they will receive them. “The professors misunderstand what their rights are,” Dr. Block said. “And I guess they misunderstand the law and what entitlements students have.”

Even if students are legally entitled to assistance, denied requests can be difficult to appeal. “Students can be afraid of reprisal, because this is the professor that’s responsible for their grade or someone that might be writing them letters of recommendation for their graduate training,” Dr. Block said. “It’s very tricky.”

Heyward knows this conflict well. Receiving accommodations such as deadline flexibility can be hit or miss. “I’ve had professors not allow me extra time and I’ve had professors who say ‘take as much time as you need, you can give it to me next week if necessary, just tell me what you need and we can talk about it,’” she said.

But while some may feel reluctant to accommodate students like Heyward, others simply do not know how.

In April of 2015, Dr. Block helped organize a workshop on access and learning at Stony Brook University. Although it was planned last minute, the event ended up being completely full. Faculty members came in from all ends of campus looking for guidance on how to better help their students.

“These were all professors who obviously cared deeply,” said Dr. Block. “And they were sharing stories about their experiences with the students, and some of them were in tears because they wanted to help the students and they didn’t feel like they were given information or support from the administration to help them do that.”

Margaret Price, an associate professor and the author of Mad at School: Rhetorics of Mental Disability and Academic Life, spoke at the workshop. “The project of accessibility in higher education means more than just ensuring everyone has a proverbial seat at the table,” she said during her presentation. “It means rethinking what that table itself means.”

Dr. Block also pointed out that student services are often so overwhelmed with handling accommodations that they often lack the time to help faculty better understand how to help disabled students. “The way that the students can consult with student services, there should be someone that the faculty can go to that’s an expert in these issues as well,” she said.

Another burden placed on the students is disclosure. A person with an invisible disability often has the option to not disclose their disability, and due to the surrounding stigmas, may do so even if it means not being able to receive accommodations.

Of course, complete privacy is not always a guarantee. In one private communication, a professor from another college — whose name was requested to not be revealed — received a notice saying that a student’s disability services were being cancelled. The reason for the cancellation was that the student said they did not need the service, but the professor felt that notice implied they were being deemed ineligible.

The professor replied to the notice: “I have 2 conflicting reactions. First, if so, it’s none of my business. No faculty should know that you found a student ineligible because it brands them as a whiner or a liar. Second, if you said ‘no,’ I would want to speak to her myself to be sure she knows that I may be willing, even if you are not.”

“Getting a degree is hard, everybody knows that,” Heyward said. “No one likes it, but you have to do it and you have to go through it and having a disability makes it ten times harder. It’s good to know you have people there, you just need to make sure people stay.”