For students living with disabilities, self-advocacy is key

Students and faculty members discuss living with disabilities on campus

Many students with disabilities struggle to transition from high school to university.
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When Madia McGowan, ArtSci ’24, arrived at Queen’s in 2020, she saw it as a “big adjustment”—but not in the way most students do. It’s not unusual for incoming students to see the shift to university as a turning point in their lives, but for McGowan, who was diagnosed with Crohn’s disease when she was 10 years old, that transition symbolized something more.

Away from home, McGowan had to learn how to monitor her chronic illness and adapt to living on her own for the first time. It was at Queen’s that she discovered ASUS Crohn’s and Colitis, a club that fundraises and spreads awareness about irritable bowel disease (IBD), typically led by those who live with the illness themselves. Beyond just advocating for students with chronic illness, the group serves as a wellspring of community and connection for other students on campus living with IBD.

Now in her final year at Queen’s, McGowan serves as president of the club, where she hopes to support other incoming students living with chronic bowel illnesses who were once in her position. Today, the club hosts discussions on navigating university life with an invisible disability, provides guidance on how to discuss IBD with friends and professors, and shares IBD-friendly recipes.

Such community groups represent a crucial form of empowerment for students with disabilities and chronic illnesses. According to McGowan, they allow peers to meet and support each other, discuss their experiences, and share strategies for navigating their disease.

“Crohn's and Colitis is not only about fundraising and spreading awareness around IBD,” McGowan said in an interview with The Journal. “I also think that it's where you build that community and you learn about accommodations, learn about different ways to live with the disease, or just have someone to reassure you that whatever you're going through, you're not the only person.”

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Nearly 3,500 students at Queen’s receive academic accommodations for a disability, and more than 50,000 such students are registered in accessibility offices around Ontario—but you might not be able to tell just from looking around a typical campus. In a world that wasn’t always designed with their experiences in mind, students with disabilities and chronic illnesses often find themselves coming up with their own ways to navigate the landscape of post-secondary education, forming communities of care and finding unique ways of speaking up for themselves.

For students like McGowan, those opportunities arise on both an individual and community level. Here at Queen’s, she organizes and advocates for other students with IBD through ASUS Crohn’s and Colitis.

On her own, McGowan finds managing her energy levels carefully is key to balancing her academics with her illness. This might look like following special diets, scheduling downtime in between sports and academics, using the University’s self-declared short term academic accommodation policy to give herself extra time when she needs it, or staying active to maintain her mental and physical health.

“My parents played a big role in supporting me, making sure that I eat well, and that I get enough sleep and not exercise,” McGowan said. “Coming to Kingston, I definitely had to make a couple adjustments to post-secondary. I hope Crohn’s and Colitis at Queen’s can build on those points and let other students know what to expect, and how to manage it.”

Caitlin Elrick, ArtSci ’25, sees a similar pattern in her own experiences. Elrick, who lives with rheumatoid arthritis, finds that every day is different for her. In order to account for the ups and downs of her illness, Elrick keeps herself highly organized with planners and weekly agendas.

“Some days, I wake up, and I'm exhausted, and I'm in a lot of pain, and I don't want to do anything,” Elrick recounted to The Journal. “So I find I plan in advance a lot, because then if a day does come up, where I'm really not feeling good, it doesn't like I doesn't feel like my whole life is falling apart.”

While both McGowan and Elrick have found ways to thrive at university, they also see places where Queen’s falls short.

For McGowan, these gaps emerge in the lack of opportunities for multiple short-term accommodations a year. While she doesn’t need long periods of time off school, she’s had to use the self-declared short term academic consideration at least once a semester, and wishes there were ways for students like her to obtain more “sick days”—days when she has to manage her illness.

In Elrick’s case, there’s a lack of awareness and information around financial supports for students with disabilities. As a working student, Elrick says she didn’t know about the offerings the Student Awards Office and OSAP provides for students with disabilities until this summer.

Still, both students see their chronic illnesses as experiences that have shaped their identities to this day. McGowan considers the opportunity to build community with other students with IBD as vital evidence she belongs at Queen’s.

“I find it very reassuring when I have people in my community who have Crohn's, and that's a big reason why I've stepped into the role of co-chair [of ASUS Crohn’s and Colitis], because I want to continue to build that community,” she said.

As for Elrick, living with an invisible illness has given her greater empathy for others’ lives.

“It’s created part of my personality where I'm kind of very accepting of other people, and I always acknowledge that you don't know what's going on in everyone's life. Because like I said, my [chronic illness] is an invisible illness, and you'd never necessarily think that I'm sick, but I am. That can go for anyone to see.”

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Isaac Sahota, ArtSci ’22, once chaired Accessibility Queen’s (AQ), the AMS’ student-led advocacy group for students with disabilities. Now graduated, the former Queen’s student is studying law at UBC.

While at Queen’s, Sahota spent a significant amount of time advocating for students with disabilities. Although he’s proud of the community he formed and the initiatives he started—such as a mentorship program for students with disabilities, or the purchase of accessibility mats to make campus surfaces more accessible—he knows there are limits to this kind of advocacy.

Organizing wheelchair-accessible yoga or socials for students with disabilities with AQ is one thing, but tackling the structural accessibility issues present at Queen’s—like inaccessible sidewalks and roads—is another. Sahota, who uses a wheelchair, remembers how he had to navigate his first month at Queen’s without any accommodations, because of the time it took to set up an appointment with Queen’s Student Accessibility Services (QSAS).

Even afterwards, he recalls being unable to attend his lectures in Mackintosh-Corry when the accessible elevator was broken, or being faced with auditoriums that were completely inaccessible. Once the sidewalks filled up with snow during the winter, he sometimes found it impossible to get to class for weeks.

In these cases, Sahota contacted his professors and explain his situation. While he found that instructors were always eager to help, the process of asking for accommodations each time he missed a class or reporting an environment he found inaccessible was “exhausting.”

“When I'm doing the advocacy work, I'm happy I'm doing it, and I will keep doing it,” he told The Journal in an interview. “But what I'm trying to say is, at the end of the day, these are extra hours. You're putting in this extra energy now apart from your regular life, apart from your regular academic stuff that you're taking care of.”

To Sahota, gaps for students with disabilities remain commonplace, and the University still has a long way to go. Providing more bursaries and financial assistance for students with disabilities, asking about their needs earlier in the year so they arrive on campus with accommodations already in place, and ensuring a smoother transition from high school to university are key to easing the difficulties experienced by students with disabilities.

At UBC, Sahota says students with disabilities can use a shuttle to get from place to place—something he sees could be beneficial at Queen’s during the winter. According to him, the problem isn’t just that classrooms aren’t accessible, but that the ways students get to and from class also aren’t.

Katherine Wieser, ArtSci ’25, echoed Sahota’s thoughts on accessibility. She requires the Kingston Access Bus to get around town, which costs $3.25 per trip—or $80.00 a month for a non-subsidized monthly pass—and isn’t covered by the AMS’s Bus-It program. Furthermore, this bus must be booked days in advance, which poses a problem when Weiser’s geography professors drop surprise field trips on her with only a few days of warning.

“With my chronic illness, for the most part, I can get assignments in on time. But there's nights at the last minute, where if my illness flares up, I may be out with my illness for a week, and so my assignment’s late. Even though I tried to let [my professors] know ahead of time, it's not always possible,” Weiser told The Journal.

Weiser has tried to get involved with the AMS on accessibility issues, but says her inquiries have gone unanswered for years. Although she’s had “amazing” experiences with Queen’s Student Accessibility Services (QSAS) in terms of getting accommodations, she claims they’re often hard to get a hold of, and poorly equipped to answer specific questions about students.

For students like her and Sahota, the barriers faced are much larger than any individual person. Rather, they require more systemic changes to address.

These changes are making themselves known on campus, slowly but surely. In recent years, QSAS has introduced platforms like Ventus to centralize communications about accommodations on campus, and has updated its website so students can find accessibility information and book appointments with counsellors more easily. QSAS also welcomes feedback from students who use their services and want to make their needs known.

“Queen’s is committed to creating a campus environment where everyone has a full and enriching experience, which includes working to ensure that its services, supports, and campus spaces are accessible for persons with disabilities,” the University wrote in a statement to The Journal.

Dr. Mary Ann McColl is a professor at the Queen’s School of Rehabilitation Therapy, and the academic lead for the Canadian Disability Policy Alliance. McColl, who sits on a campus accessibility committee, says the University is hard at work at making campus more accessible, whether it’s through installing signage, improving the physical accessibility of learning environments, or repairing institutional attitudes towards students with disabilities.

As an instructor herself, she says one of the most important things students with disabilities can do to advocate for themselves is to begin communicating with their professors and classmates.

“If you want people to understand your situation and to respond in the most positive way possible, you have to trust them enough to talk to them. As a professor, I will move heaven and earth to make things accessible for students, but they have to tell me what they need,” she said.

Wieser and Sahota’s experiences echo this statement, with both students reporting positive interactions with professors whenever they’ve had to make their needs known. The disparity that students with disabilities face often looms large, but changing institutional attitudes about can help close that gap a little more.

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Dr. Jeanette Parsons graduated from Queen’s in 2021 with a PhD in Rehabilitation Sciences. During her time at Queen’s, she acted as the University’s senior accessibility services advisor, while writing her thesis on how first-year students with disabilities experienced the transition from high school to university.

Parsons is no stranger to the accommodations process herself. During her years as an undergraduate at Wilfred Laurier University, Parsons recalls the barriers she faced as a student with a disability.

As her hearing loss worsened, she eventually found herself unable to hear her instructors. At that point, Parsons recalled arriving in tears at what Laurier called their “special needs office”—a room so small, it was like a “tiny little closet.” There, she was embraced by someone who worked in the same position she does now, who gave her access to a professional notetaker.

That aid, Parsons said, made all the difference in her academic career.

“I felt an immense weight lifted off my shoulders. I felt like I was a very bright individual. Once I had the information I needed, I could engage with it. I could read it, stand it and I could do very well, but in a hearing environment, I really couldn't make it work.”

Parsons remains a powerful advocate for students with disabilities in university settings because of that very experience. Today, she works at Wilfred Laurier, her alma mater, as the Director of Accessible Learning.

“Over the years, I met with many first-year students with disabilities coming from high school to university, and I was witness to their apprehension and unease, but I was also the privileged listener of some really remarkable stories that students chose to share with me about their experiences,” she said to The Journal.

If there’s one thing Parsons wants students with disabilities to understand, it’s the importance of self-advocacy. Many first-year students see the accommodations process as opaque and aren’t used to discussing their needs. Moving from a high school to a post-secondary environment means students have to learn how to speak up for themselves, when their parents and teachers might have previously done that on their behalf.

To Parsons, this means students need to get in contact with accessibility offices early and make their needs known to their counsellors. It also means universities and high schools have to collaborate more closely to aid students in their transition, so they know what to expect in a more independent environment.

“I wanted to somehow have a chance to influence the environment, so that [students with disabilities] could focus on what everybody else was focusing on: experiencing success in our academics, making friendships, and building relationships,” Parsons said.

Harnessing the power of self-advocacy could be what makes all the difference.

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