From a superficial standpoint, Emily Glazer appears perfectly healthy, a spry twenty-something with an athletic build. And yet, according to the petite brunette, if you look closely, you may notice the frequent, albeit subtle, readjustments she makes to her body and stance.
For the past eight or so years, the 27-year-old has experienced chronic pain centred in the hip and pelvis areas—pain she describes as "pretty constant," although it fluctuates in intensity. She has, to no real avail, seen numerous medical specialists and undergone surgeries on cartilage near her hip joints. The cause of the pain, if there is one, is undetermined.
"I used to play a lot of ice hockey and land sports. It's possible that I have some sort of anatomical abnormalities and that, combined with playing sports, might have triggered it," Glazer explains.
The pain gets worse when she sits for long hours or when she's inactive. Poor eating and lack of sleep can also exacerbate it. It hinders her ability to work a conventional, full-time job, and therefore makes it a challenge to earn a livable wage.
With a Master's of Science, Glazer is currently looking for part-time health research work, ideally with flexible hours, to supplement some freelance writing and editing she's been doing. In the meantime, she's been living with friends or family members and waiting to see if her application to the Ontario Disability Support Program (ODSP) will be approved.
Glazer identifies as having an "invisible disability," a term commonly used to describe an illness or health issue not typically apparent from the outside.
Invisible disabilities seem to be increasingly on the public radar, particularly as the media places greater focus on mental illness—frequently filed under "invisible" on the disability divide—and as corporate bigwigs such as
Deloitte explore further inclusion of people with disabilities in the workplace.
But mental illness is just one example of an invisible disability—the term is also used, unofficially, to cover things like chronic pain, fibromyalgia, diabetes, cognitive and learning issues, fragrance or chemical sensitivities, chronic fatigue syndrome, and even certain visual and auditory impairments—and the issue of invisible disability is still too often misunderstood and mistrusted, particularly where the workplace is concerned.
While companies seem generally to be taking steps in the right direction, the issue deserves greater attention. An understanding of what people with invisible disabilities experience in terms of barriers to the workplace and struggles once employed are worth looking at more closely.
(Invisible) Disability and the 'Duty to Accommodate'
The Canadian Human Rights Act's "
duty to accommodate," which calls on federally-regulated employers to provide workplace accommodation to staff with disabilities, differentiates between "visible disabilities, such as the need for a wheelchair," and "invisible disabilities" like "cognitive, behavioural or learning disabilities, and mental health issues."
Interestingly, a Toronto-based human rights lawyer and consultant who provides neutral human rights and equity skills to employers, unions and non-profit organizations, says the real problems lie not with the law, which emphasizes looking at each case individually, but with people's failure to catch up in terms of their attitudes towards invisible disability.
She suggests that people with invisible disabilities may, in some ways, have a tougher time in the workplace due to a misperception that it's harder to accommodate these types of health issues, in addition to the potential trust issues it can bring up.
"Even if someone with an invisible disability has a sympathetic employer, if their condition is confidential, you could have co-workers saying, 'why are they getting special treatment?'… They may feel they have to cover for the person leaving early or have to pick up duties the person can't do… This can create a poison work environment," she says.
This said, McLaughlin notes that individuals with less visually apparent disabilities often experience less trouble entering the workforce—Canadian law doesn't require disclosure of a disability to a prospective employer, and once hired, only if one needs accommodation—than they do once employed.
Her experience doing workplace trainings has shown that stigma still exists—particularly around certain mental illnesses.
"[During training sessions], we discuss a particular Canadian case where a person with bipolar was working in a sensitive safety position and was immediately fired upon his first episode at work. Most people in the class will say, 'that's correct, they should've fired him'… There's still a feeling that if someone has mental health issues they'll be a danger in the workplace… but if you look at the case, had the person been properly accommodated, he wouldn't have jeopardized safety."
It's difficult to know how common these sorts of dismissals really are, as records only show the cases that go to the courts or the Human Rights commission. But McLaughlin speculates they're fairly common: "Given the attitudes I see when I do education, I think many employers will just fire people [in situations like these], and then it's up to the employee to decide if they want to sue, find a different job, or give up."
Misunderstanding, Forgetting
Anna-Karina Tubunar is a broadcast journalist and consultant, as well as the host of Canada in Perspective, a weekly television program on Accessible Media Inc. (AMI) that focuses on issues affecting Canadians with disabilities. She also has her own personal experience with invisible disability.
Several years ago, Tabunar acquired a rare viral illness that interfered with functions like sight and mobility. It took about three and a half years to recover, during which time Tabunar says she often appeared "perfectly normal" to everyone despite being unable to do things she had previously taken for granted, like reading a newspaper, driving, or crossing the street alone.
She says she was lucky to have an established career and a proven record of professionalism under her belt when the illness struck, making her feel comfortable sharing her "new normal" with co-workers. However, she notes that someone with an invisible disability first entering the workforce might be met with suspicion.
"Coming out cold and saying, 'I have x, so I need more sick days,' might not be taken positively," she says, adding that there tends to be a misconception among businesses about the cost of accommodation for staff with disabilities.
"There's this idea that accommodation means building a new ramp or escalator, but 70 per cent of accommodation is about the attitude of the employer and peers. That takes no money, but time and communicating with honesty."
Glazer, whose chronic pain often requires that she take frequent breaks from work, says she's been lucky to have previously held jobs with flexible hours, but is still reluctant to disclose her disability at an interview.
The main challenge for her is having to remind employers of her disability once employed.
"My experience is that people forget constantly…because they don't see it…and I don't want to be the one to bring it up all the time."
Not being able to work full-time has made it difficult to support herself and to cover her medical costs.
"I have expenses associated with coping with chronic pain. If I had more disposable income there are things I could do to help myself, like massages or going to restorative yoga."
More generally, Glazer points to the fact that many invisible disabilities or health conditions, by their nature, are prone to fluctuation.
"Some days you're better or worse—that's hard to understand from the outside. It looks like people are being choosy or lazy about when they do or don't want to work, or apply themselves."
Steps Forward
The Road to Inclusion stresses the business case for recruiting and retaining people with disabilities, finding that roughly 14 per cent of Canadians have a disability—invisible or visible—and that this cohort is significantly underrepresented in the Canadian workforce. The paper emphasizes that greater inclusion of people with disabilities is important because, aside from the ethical and legal reasons, it's a means of addressing future talent shortages in the labour force and of creating workplaces that better reflect the markets being served by businesses.
It includes a section of visible versus invisible disability, and notes that the latter may have a greater stigma attached to it, despite the fact Deloitte's studies show people with disabilities are often more productive and loyal than other workers. Education is cited as a key way to counteract misperceptions and negative attitudes.
McLaughlin also stresses the need to persist with workplace education around disability—invisible and otherwise—and to focus, when possible, on targeted, rather than blanket issue, training. That means doing educational sessions on specific disabilities, both to prevent and address conflict when it arises.
"We need to be a dripping tap, to repeat messages and education over and over again."
Because having an invisible disability can feel so isolating, Glazer says simple acknowledgement or inquiry about the disability from employers or colleagues is appreciated, "so you don't have to carry the burden all on your own."
She's in the process of creating a community support group, set to launch in the new year, for queer and trans people living with invisible disabilities—a niche she's picked up on. Her hope is that the group will also hold roving social and educational events for the wider community (For questions regarding Glazer's future support group, you can
e-mail her).
For her part, Tabunar emphasizes the need to reframe the issue of disability in a more positive light, focusing on contributions people with all kinds of disabilities can make in the workforce and society as a whole.
"If we shift our thinking from the 'dis' part towards what we are able to do, with the help of technology and our peers, we can still function and contribute in a meaningful way."
Jodie Shupac is a freelance journalist living in Toronto. She writes about social issues, urban affairs, culture and the nonprofit sector.