Studying with a ‘hidden’ disability

As a follow-up to last issue’s article, the Journal looks at the challenges facing students with disabilities

Michael McNeely, ArtSci ’10, who has Usher Syndrome, has someone help him take notes during lectures, and uses an FM system to hear to his professor speak.
Michael McNeely, ArtSci ’10, who has Usher Syndrome, has someone help him take notes during lectures, and uses an FM system to hear to his professor speak.

Few people at the University know there are about 500 students with disabilities enrolled here every year, said Disability Advisor Barbara Roberts.

“About 94 per cent of those have conditions that you can’t see,” she said. “That would be why it doesn’t look like there are a lot of people out there, but there are.”

Michael McNeely is one of these people. The ArtSci ’10 has Usher Syndrome, an in herited condition that causes serious early hearing loss and progressive vision loss. McNeely is legally deaf-blind; he can see to a certain extent, although he has trouble adjusting to varying light levels, and he can hear with a cochlear implant he got when he was three years old. He said he was one of the first in Ontario to receive the electronic device that can help to provide a sense of sound to a person who is profoundly deaf.

McNeely has an intervenor who accompanies him to his classes.

“My intervenor is there to take notes and act as an interpreter,” McNeely said. “If someone talks to me, he lets me know.”

McNeely also has an FM System that helps him hear the lecture. He gives one piece to the professor and puts the other in his ear.

Because McNeely didn’t qualify for OSAP, however, his family had to pay $1,200 for the FM System. The Canadian Deaf-Blind Association helped him pay for his intervenor.

McNeely said Queen’s has good resources for people with disabilities, but the support and access system still needs improvement.

“I think disability services is doing a good job, but they can only do so much,” he said.

One of McNeely’s friends, who is quadriplegic, got stuck for 20 minutes in the elevator at Stauffer Library while trying to get a book on the second floor, McNeely said.

“It’s important to have a sense of humour, otherwise you’re pretty much screwed and you find that everyone’s against you.”

McNeely said he thinks students’ awareness of the challenges people with disabilities face at University could be improved.

“I don’t think they really have an awareness of what people’s disabilities are or what they can do to help them,” he said.

One thing McNeely said he wants to change this year is label library DVDs that have closed-captioning, as well as expand the University’s collection of closed-captioning DVDs.

Currently, the University doesn’t label its closed-captioning DVDs, and most aren’t closed-captioning at all.

McNeely said he was interested in pursuing a degree in Film Studies, but couldn’t because most of the films don’t have closed-captioning.

“[Students with disabilities] should be as independent as possible,” he said. “You should be able to get upstairs, you should be able to cross the street, you should be able to watch movies.”

Stephanie Simpson, human rights advisor, said construction projects like this summer’s powerdoors, accessible washrooms and a lift in Grant Hall bring Queen’s closer to the building standards of the 2005 Accessibility for Ontarians with Disabilities Act, which broadened the scope of accessibility requirements.

Unlike the former Ontarians with Disabilities Act, which only requires the newly erected services to be accessible, the new Act states that all services within a given institution must be completely accessible by a target goal year.

"Its goal is to make institutions like Queen's to become completely accessible by 2025," Simpson said. "I believe we're moving in the right direction."

Simpson said she believes Queen’s has the right attitude when it comes to accessibility.

“My sense is that people are generally quite willing to entertain requests for accommodation,” she said. “Administrators see it as their part of duty as not to erect barriers for people. That broad commitment is there.” Simpson said she wants people to become more aware of hidden means of discrimination that might make accessibility more difficult.

“Steps leading to a building may not seem like discrimination, and rules like, ‘All Applied Science classes will be held at Jackson Hall’ may not seem like discrimination, but it does discriminate by creating barriers.

"It's important for people on all sides to understand that accommodation is not giving special treatment. It's removing the barrier to allow them to perform in a same place as everyone else, who are not affected by that barrier." Vice-Principal (Operations and Finances)Andrew Simpson said the University is committed to making campus more accessible, but reconciling this commitment with the desire to preserve campus buildings can be a challenge.

“It’s our heritage--it’s our wonderful old buildings that we love so much but are so difficult to work around in regards to accessibility,” he said. “They’re extremely challenging for us, and we do the best we can but there are some challenges which are very difficult to meet. … We have to work on it on a case-by-case basis, a building-by-building basis.”

Simpson said recently renovated Gordon Hall is an example of making a building accessible while preserving its heritage, but this was only possible because the building underwent a long-term, complete renovation.

“We had to do it as part of an entire renovation of the building,” he said. “When we don’t have the ability to renovate the entire building you find yourself doing more stopgap measures or ad-hoc solutions.” The obstacle in this case is primarily one of getting money to fund these larger renovations, Simpson said, adding that some government grants are available, but they tend to be small.

“Overall we struggle to get money directly available for these kinds of things so we have to make it a priority within our own alteration and renovation funding internally,” he said. “I think the entire university community, not just Queen’s, are very concerned that the government acknowledge the deficiency in funding.”

Recent changes to the Ontario Disability Act have placed more of an onus on organizations such as universities to become more accessible, Simpson said.

“There’s a much more much greater responsible for response and making provisions to accommodate people with disabilities,” he said. “It’s not just a question of priority, but it goes further: it actually mandates that we must respond and we must accommodate.”

Emma Arenson, ArtSci ’09, has dyslexia. All her life, she’s been trying to learn how to live with her invisible disability, and applying for university was no different.

“Certain universities in Canada said dyslexia was a disorder that was recognized, but they wouldn’t give me double time, they would only give me a time-and-a-half,” she said. “Other universities wouldn’t accommodate me on their application process.”

One of these universities was Oxford, whose application process includes a reading component. Arenson successfully sued the university according to Britain’s disability laws, and forced Oxford University to alter its application policy for students with disabilities.

Arenson said she chose Queen’s in part because it was relatively “pro-disability.”

“I visited disability services and they seemed really supportive,” she said. “They weren’t like, ‘Oh, you can’t get this accommodation,’ they were like, ‘Of course you can get accommodations, and if you have any problems with your profs, we’ll add different accommodations.

“I just felt that their attitude was better.”

Arenson said she hasn’t had any problems with accessibility at Queen’s, although she often has to explain her disability to others at the University.

“I’m used to having to sort of re-explain what it means,” she said. “There’s so many disabilities out there and I’m sure not everyone’s aware of what disabilities are and what they mean … You sometimes have to talk to your profs and sometimes you have to talk twice to them and sort of reinforce what an accommodation means. I’ve never had somebody blatantly say here [at Queen’s] that, ‘You can’t do that’ or, ‘You’re stupid.’”

Arenson said the least favourite response to her requests for accommodation is that she wouldn’t be able to get that in the “real world.”

“’In the ‘real world’, you won’t be able to get X, Y, Z accommodations.’ I’ve never gotten that at Queen’s.

“You would not believe how many people would say, ‘In the real world, how can you be what you want to be if you can’t read at grade level or spell?’ You make your own world.”

Arenson can read, but very slowly and not as perfectly as she’d like. She gets double time on exams, and tries to get her textbooks on tape.

“For books on tape, that’s a bit of a challenge, because although publishers are meant to release their electronic files to those with disabilities, they don’t … They’re worried about people napstering their text,” she said. “I often don’t get my books until a month-and-a-half in … Sometimes profs just decide to add other readings in, and that causes a lot of grief.”

Research projects are particularly difficult, Arenson said, because most of these aren’t available on tape. Arenson said she can scan these into her computer, which converts it to a text document and then reads it to her aloud; this can be a time-consuming process, however.

“Since I’m not blind I can actually just read very, very slowly,” she said. “Depending on the time it takes to scan.”

Arenson gets double time to write her exams, and sometimes has a proctor or TA read her the questions.

“If I have a multiple-choice exam, I’ll ask a reader ’cause I will not trust my reading ability,” she said, adding that when she was younger she was too embarrassed to ask for a reader on multiple-choice exams, and her marks suffered because of it.

“Multiple-choice, they’re designed to look alike or sound alike.”

Arenson said she doesn’t think most students at Queen’s know much about people with disabilities.

“When you see a student in a wheelchair you either feel bad or you ignore them because you don’t know what to do … Or you stare at someone who’s talking in sign language,” she said. “People don’t wear signs that [say they] are disabled so unless you ask, you probably won’t know.”

Arenson, who is on the Accessibility Queen’s executive this year, said one thing she’d like to try is to have an “accessibility passport” which would get stamped whenever a student went to an area that wasn’t accessible--for instance, a ramp-less staircase, or a library with books that aren’t on tape.

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