Living beyond their limitations
Patricia Rae and Susan Croft both look to educate others about their disabilities
- March 8, 2013
In her mid-twenties, Patricia Rae’s mobility was given an expiry date.
She was diagnosed with rheumatoid arthritis (RA) at age 24 and admitted to a hospital for complete bed rest in an orthopedic ward. At the time, she was a serious rower at Oxford University.
She said it’s important to know that disabilities aren’t always obvious at first sight.
Rae recalls being the youngest patient in the wing by about 50 years.
A doctor told her that she should expect to be in a wheelchair, with limited mobility, by the age of 40.
While RA meant Rae had to transition from rower to coach, it didn’t mean the end of her academic career.
Today, Rae works as a professor of English at Queen’s and held the position of department head between 2002-07.
“It’s really hard when you’re young and you have this disease and you know that there’s no cure for it and you can be really laid low by people’s predictions,” she said. “That’s why you have to be stubborn. I’m very stubborn, you have to be.”
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One in six Canadians over the age of 15 are reported to be living with RA — a disease that causes the body to attack the healthy tissues around certain joints causing inflammation.
Although it’s commonly known as an “old person’s” disease, RA can affect anyone, at any age.
While Rae’s battle with RA isn’t immediately obvious, she still must take precautions in her day-to-day life.
She’s able to receive accommodations from the University to exempt her from teaching classes in the early mornings and to keep her classrooms close to the underground parking lots.
She must also be careful with icy walkways and the stairs in lecture halls.
Rae added that she believes Queen’s has never denied her support in terms of getting help with her illness.
During her time as Department Head, Rae was granted time off when she had no choice but to take a break to have her knee replacement surgery.
“High pressure professionally and RA is a pretty tough combination,” she said.
Despite facing challenges with writing on the board if her hands are too painful, Rae teaches three times a week, as well as holding office hours and working from home.
Some days can be harder than others for those living with RA.
“I will often feel really nervous before a class, I just can’t go through with it and I can’t stand up there and do it, but the minute it gets started I lose that fear,” she said. “I find that I always end up being lifted up by the experience and I always feel better coming out than I do going in.”
As with most arthritis sufferers ,pain is constant, but swelling episodes in the joints come in waves throughout life and cause more pain.
Sometimes Rae said she waited too long before taking care of herself and asking for help when her disease reached a difficult point.
“I don’t like asking for help from anybody because somehow it seems like asking for help is weakening a little bit and you’re afraid of weakening and then giving in and giving up, or something like that,” she said.
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Each morning, Rae takes the time she needs to start her day — her husband brings her lattes in bed and gets her son off to school.
It’s common for those suffering with RA to experience immense pain and crippling stiffness in the mornings.
Despite the everyday pain she endures, Rae said she doesn’t consider her RA a disability.
“I do think it shapes those of us with it, it shapes us in a very profound way. It’s inseparable from who we are because of that need to fight against pain and fatigue, that just becomes part of who you are,” she said.
Every weekday, Rae picks up her son, who was diagnosed with ADHD from school.
She does what any parent would do to make sure her son does his homework and eats dinner.
“My biggest challenge has been being an arthritic mother of a hyperactive [child],” she said. “I can’t give in to arthritis, though, because what’s going to happen to him if I give up?”
Educating people about invisible diseases like RA will further accommodate and help those living with these struggles, she said.
“I think the solution has to lie partly in educating people and cultivating a culture where people understand that even thought they can’t see your disability, it’s real,” she said.
The Disability Service Office
The Disability Services Office (DSO) at Queen’s is funded by the Government to support students with disabilities.
This academic year, 809 students are registered with DSO. 90 per cent have a disability that isn’t physically visible.
Advisors support students while speaking with administration, faculty and department heads and the Human Rights Office on their behalf.
The Adaptive Technology Centre (ATC) is run through DSO and works closely with students who need access to these technologies to aid their disability.
— Rachel Herscovici
Susan Croft
Susan Croft refused to let her grades drop after she was told as a child that her worsening eyesight would have an impact on her A’s.
Today, Croft, Law’13, is completely blind, but thanks to certain technologies, she is able to take her classes in a similar way to her peers.
For Croft, attending law school and becoming a lawyer had been a dream since she was in grade seven and she works tirelessly to make sure she stays on track.
With the help of her guide dog, Andy, the third-year law student is able to get around campus and do her readings through software that converts her textbooks to spoken words.
The iPhone is one of her favourite gadgets because it finally allows her to text.
She swiftly guides her hands along the phone finding the desired application as the phone speaks to her, informing her of each one.
Croft is also armed with a flashlight-like gadget that she points over certain clothing items to describe to her the colour of her shirt or pants.
“You can tell whether you’ve put on the right coloured tank top under a certain sweater — you wouldn’t want to do pink under a red shirt or anything and it will tell you that which is great,” she said.
For her morning coffee, Croft clips on a gadget onto the side of her mug and once the hot liquid touches the prongs on the inside, it beeps and she knows her mug is full.
“Instead of sticking your fingers in the cup to find out that it’s full and burning you finger, the thing will buzz instead,” she added.
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“I don’t even remember having sight in both eyes so there was always that issue,” she said. In third grade when she was required to wear thick lens glasses, because of her worsening cataracts, she started to feel different than her peers.
Professors will receive notice through HCDS that a student with vision impairment will be in their class.
“Some professors are completely fantastic ... some profs keep going as if nothing is changed and that can be a little bit difficult,” Croft said.
She added that to help her keep up she receives class notes through the volunteer note taker program run through HCDS.
Croft said that the hardest part of living with her disability is getting to new places and navigating her way through different obstacles, but for the most part she said Queen’s has been very accommodating.
Problems can arise during Frosh Week when students fill the streets and Andy becomes very confused, or times when Andy has been petted during his working time on the street.
During lecture, Croft sets up her computer with her headphones to navigate her note taking program. While Andy gets comfortable under the desk, she types away on her laptop like every other student.
“If I’m in a small group and we’re doing introductions and stuff I tend to say, ‘Hello, my name is Susan, the beast under the table is my guide dog Andy,’” she said.
Croft is open to sharing her disability with others and remains positive about others’ reactions to her differences.
“People shouldn’t be afraid to share and they shouldn’t be afraid to ask,” she said. “Asking a question never hurts. People will never know if they never ask.”
— Rachel Herscovici
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