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Halifax disability advocates raise awareness for invisible illnesses

3 in 5 Canadians with disabilities have fluctuating symptoms, report says

3 min read
caption Colin Kibenge-MacLeod poses with his cane.
Andrea McGuire

April Hubbard parked her car in an accessible parking spot at Dalhousie University. She hung her accessible parking permit, and walked around the back to pull out her wheelchair. But before she could do that, a stranger emerged from a nearby building — running, shouting, and ready to lash out.

“He got pretty nasty with me, confronting me,” Hubbard says.

“I pointed to the accessible permit, I tried to have a conversation with him, but he just wasn’t willing to hear it. And yeah, he got really, really upset, to the point that I just had to get the chair out and wheel away.”

Hubbard, 34, has a tethered spinal cord. It’s a deteriorative condition, and she is gradually losing the use of her leg. She started off using forearm crutches but now uses a wheelchair most of the time.

That incident in the parking lot was 10 years ago, but Hubbard says when she gets out of her wheelchair, she is still often met with anger and confusion.

“People, after they get to know me, will joke that they thought I was faking when they first met me,” Hubbard says.

Report challenges mainstream views of disability

People with disabilities who struggle with a range of changing symptoms, or who face scrutiny for switching mobility aids, often feel misunderstood.

According to Statistics Canada’s 2017 Survey on Disability, 6.2 million Canadians over the age of 15 self-identify as having a disability. And at 30.4 per cent of the population, Nova Scotia has the highest percentage of people with disabilities in all of Canada.

A report published last month shows that 61 per cent, or three out of five Canadians with disabilities experience dynamic symptoms that change over time. The report contrasts these dynamic disabilities with “continuous disabilities,” which generally remain more stable.

“Typically when we talk about disabilities in general, we tend to think of something that’s quite static and quite permanent. Where that came from, I can’t say,” says Stuart Morris, a lead author on the report.

While Nicki Himmelman, 46, hasn’t had outright confrontations with strangers, she has been glared at for parking in accessible parking spots.

She has Ehlers-Danlos syndrome and psoriatic arthritis, and her symptoms change from day to day. Sometimes, she doesn’t use any mobility aids. But when her pain is acting up, or she thinks the day’s activities will exhaust her, she switches between using a cane, a walker and a wheelchair.

“Mostly my main concern areas are chronic pain, leg supplication and dislocations of my joints. So I can be walking and my hip will pop out, or I can be reaching up on a shelf and my shoulder will come out,” says Himmelman, vice-president of the Atlantic Ehlers-Danlos Syndrome Society.

Colin Kibenge-MacLeod, 29, also alternates his mobility aids. Amongst other diagnoses, he was born with spina bifida occulta.

Kibenge-MacLeod points out that when some people see someone in a wheelchair, they often assume that person is “wheelchair-bound when in fact, that’s not always the case.”

He’s never dealt with a confrontation, but he’s endured a few glares. He says people can get confused when he switches between aids.

“I like to see the glass half full,” Kibenge-MacLeod says. “They’re trying to understand me as much as I can try to understand somebody else.”

Dakota Lloyd, 28, also has Ehlers-Danlos syndrome. Lloyd deals with a lot of chronic pain, and sometimes uses knee braces as a mobility aid. Still, Lloyd says, “I’m never the right kind of disabled.”

“People want to know that you’re sick. They want to know that you’re in a wheelchair. They want something visual and concrete that they can understand.”

Different kinds of disabilities

Like Himmelman, Lloyd wishes for more awareness of “invisible illnesses” — disabilities that may not be outwardly obvious.

Kibenge-MacLeod wants to highlight that there are many different kinds of disabilities.

“Just because I have a disability doesn’t make me the exact same as everybody else in the disabled community,” he says.

Hubbard, too, wants the public to recognize and appreciate more fully “a variety and spectrum of disability.”

“The world doesn’t really understand how to see us and navigate that situation yet,” she says.

“But yeah, you talk to us — we’ll help you through it.”

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About the author

Andrea McGuire

Andrea McGuire is a journalism student from Newfoundland. Before coming to King's College, she completed a master's degree in folklore at Memorial...

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    I feel people need to mind their own business. You don't know that persons story. I wear leg braces to walk. Without them, I'd be in a wheelchair but all people see is me getting out of my vehicle walking. What they don't realize is every step I take is filled with pain & I only want to get in & get out as quickly as possible. I can't walk long distances. If I could, I wouldn't park in a handicapped parking space. Some days I have pants on that cover my leg braces so they can't be seen but they're still there. Please people, mind your own business. If someone is parked in a handicapped space, they're there for a reason. They have a handicap card to hang in their window for a reason. It's none of your business what that reason is.
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    Dave Burchell

    There is a lack of understanding on what is described as "invisible disabilities", that is so true. For most people, their invisible disability us such that anyone looking at them sees no difference between that able bodied person walking and the disabled. My issue is that those with invisible disabilities can walk to their destination, while those with mobility issues cannot do so as easily. Having a handicap sticker in your window allowing you to park in a handicap parking spot, identifies mobility limitations, not mental health limitations. That is a fundamentally drastic difference when it comes to handicap parking spots. Suffering from both types of disabilities, I go ballistic when I see someone in their shiny sports car with a placard park, and then run into the grocery store and is back out with a bag before I have parked, and pulled my walker out of the back of my vehicle, set it up, attached my cane and started to move. Handicapped my patootie!
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      Deb Sanderson

      I don’t think that Dave has actually read the article. Invisible Disabilities are NOT limited to psychological/psychiatric issues. I too have Ehlers Danlos/Hypermobility Spectrum Disorder. I also have Mast Cell Activation Syndrome and Dysautonomia, which are commonly associated with EDS. The symptoms from the second two conditions are often more debilitating for me than the EDS. You would be very hard pushed to “see” my symptoms that leave me exhausted and make it difficult to move on the days that the symptoms are flaring. Does this mean that I am “less” disabled? It certainly doesn’t feel that way, if I was not feeling so “disabled “ I would be back at work and living a normal life, both of which I would love to do. Invisible disability sucks. When you have a leg in a cast, a sling on your arm, society feels that you are entitled to sympathy and help, however, if you feel dreadful, fluctuating in your physical disability and look just fine....then tough. Apparently we are supposed to hide, not use disability aids and stop trying to make people believe that we are actually unwell. The stories above about being berated for using Disability hangers are repeated time after time in the EDS community. If you think it is fair to question people that you don’t know about their health issues...maybe you should stop and think about how you would feel is it was you with a crappy “invisible” illness. Funnily, these are the very people that make the most noise when these things do happen to them eventually!
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