Invisible disabilities slip through the cracks

For some students, accessibility issues persist despite recent improvements

Invisible disabilties go unnoticed on campus.
Photo: 

When Kaitlyn MacDonald entered Landmark Cinemas in Kingston this summer, she started to cry.

It was the first time since her Diabetes diagnosis in January that she’d seen a safe place to dispose of her insulin needles. The $8,000 pump was prohibitively expensive and she chose needles to inject her insulin, unaware of the surrounding accessibility issues.

MacDonald, ArtSci ’19, said Queen’s prides itself on its accessibility—it’s why she was surprised to struggle finding accommodation.

On campus, there were no empty, clean spaces to inject her needles, and MacDonald had nowhere to dispose of them. She injected each time she ate, requiring her to uncomfortably lift her shirt in public multiple times a day.

For MacDonald and other students living with invisible conditions—limiting a person’s movements, senses or activities—campus accessibility can have social implications beyond physical barriers.

In its 2018-19 budget, passed this July, the University allocated $250,000 to accessibility improvements. They intend to annually increase this funding by $25,000 over the next five years.

Similarly, Physical Plant Services developed a five-year accessibility plan for barrier removal in existing buildings.

While these steps make strides for physical disabilities, accessibility progress for students like MacDonald can be small, and often specific.

One major accessibility change is that medical professionals used to be required to fill out the entire accommodations form for students. It led students to be frustrated when the professionals struggled to explain the educational barriers the students faced. Students can now write the forms themselves, and can have a medical professional sign off.

The University may not be able to address every disability, according to Andrew Ashby, Accessibility Coordinator at Queen’s. But addressing 95 per cent is impressive regardless.

While the University increases funding, the financial burdens of a disability persist. For students with a learning disability, a psycho-educational assessment in Ontario costs between $2,000 to $3,500.

It must also be renewed every three years, with only part of the cost being covered by some insurance plans.

While the University’s increased funding is a step forward for physical disabilities, invisible disabilities like MacDonald’s may not receive the same attention.

MacDonald approached Queen’s Student Accessibility Services (QSAS) about the lack of available sites and needle disposal outlets. She was told they were unnecessary. Most students used the $8,000 pump and her case was too rare.

Living a 40-minute bus ride from campus and with no close alternatives, she was out of options. She started injecting insulin in the office of a friend of her father on campus, rather than continuing the public insulin injections.

Meanwhile, another student, Elijah Nadler, still carries her insulin needles home after use.

Nadler, ArtSci ’20, will have roughly 30 needles in her bag by the end of any given day.

 

***

 

For Amy Hanes, MA ’20, a flashing lightbulb in a lecture or a sudden noise is enough to trigger her epilepsy.

One time, she nervously sat through a two-hour lecture where a bulb was flashing. Her guest lecturer joked, "I hope no one here is going to have a seizure."

It was one of the small moments she knew her condition wasn’t always considered.

Accommodations were first recommended to Hanes when she had a seizure during a midterm. She was okay, but arriving back in that class the next week was difficult, especially because of anxiety than can be a catalyst and a product of her seizures.

"It’s important to create a space where students can come back after incidents like these and feel minimal reliving of the trauma," Hanes said.

Queen’s InvisAbilities, which works to combat stigma against invisible disabilities, supported Hanes through the process. The club aims to raise awareness and offers a buddy program to support students with invisible disabilities.

"Accommodations aren’t meant to be convenient," Hanes said. "Being inclusive of diverse human needs is and will continue to be a tremendous challenge, but it doesn’t mean that we should just give up."

Hanes is allowed to have a laptop in class despite a number of professors banning laptop use. Using her computer, however, can make her the object of other students’ attention, and sometimes, resentment.

"I should be given a choice to publicly identify my disability and need for accommodation, rather than being forced out," Hanes said.

Aerin Leavitt, ConEd ’20, was born deaf and receives in-class accommodation as well.

Her professors wear a Frequency Modulated (FM) system, which hooks up to her cochlear implant so she can hear her lectures.

One professor refused to wear the FM system and Leavitt struggled as a result.

Without note-takers in the class, Leavitt feels she would have done "terribly."

Not all note-takers are reliable, however, and some simply stop providing notes in the middle of the term. If no one volunteers to take over or be the note-taker in the first place, students who need them simply go without.

In some cases, her classmates remarked how lucky she was to have accommodations that get her notes written out for her.

"There is still a lack of understanding as to how difficult it is for people with disabilities to succeed in class," Leavitt said. "People sometimes see accommodations as taking the easy way out."

When the first term of the class ended, Leavitt tried again to get her professor to wear the system.

"He tried to say that I didn’t need it for the next term because there would be better acoustics in the classroom," she said. "But I insisted, because it’s more important for me to have access to the information than [for him to be comfortable]."

The FM system provided by the school is cumbersome and can be uncomfortable for professors. Leavitt now uses a smaller, more comfortable device her professors can wear more easily.

"In the end I got the proper accommodation, but I shouldn’t have to convince professors to wear it."

Her solution still faces affordability issues—it may not always be viable for all students.

"Equal access to education is important, but it’s not always properly met," Leavitt said.

According to Jennifer Dods, Executive Director of Student Wellness Services, just over 1,800 students with disabilities registered with QSAS and received academic accommodations in the 2017-18 school year.

That said, one in seven people in Canada have a disability, and not all require academic accommodations. According to Ashby, the number of students on campus with disabilities is "much higher" than those who register with QSAS.

As for the process, "any student with a documented disability who is registered in a course at Queen’s can connect with QSAS. Documentation will be reviewed to ensure it provides details on the functional impairments and limitations that result from the disability," Dods said.

From that point, advisors meet with students to discuss specifics of limitations and put in place accommodations plans.

For Xin Sun—who’s been living with legal blindness for past two years—there’s still work to be done.

For Sun, ArtSci ’19, her advisor at QSAS and her professors have been very accommodating. She has also made occasional use of on-campus services such as Access Champions, which pairs her with a volunteer buddy when she needs extra guidance.

As Co-Chair of Accessibility Queen’s (AQ), Sun works to improve accessibility on campus. Her club runs events like "Spot the Barriers" which encourages students of all abilities to look for spots on campus where accessibility could be improved.

"Satisfaction does not mean perfection," Sun said.

The stigma against her disability is the biggest challenge. Physical disabilities often receive more attention. Sun shares her experiences in hopes of reducing misperceptions surrounding students with invisible disabilities on campus.

She recommends facing the stigma with unconditional acceptance.

"Never question a disability," she said. "Just do what you can to help someone who needs help."

When commenting, be considerate and respectful of writers and fellow commenters. Try to stay on topic. Spam and comments that are hateful or discriminatory will be deleted. Our full commenting policy can be read here.