Invisible disability: Non-visible does not equate to non-existent
Professor Pettinicchio dives into the importance of understanding and reframing disability and the reasons why those with hidden disabilities experience financial strain.
In 2014, Associate Professor David Pettinicchio from the Department of Sociology at the University of Toronto Mississauga (UTM) published a paper titled Disability, structural inequality, and work: The influence of occupational segregation on earnings for people with different disabilities alongside his colleague, Michelle Maroto, from the University of Alberta. Their study found that employers were less accommodating of those with non-visible disabilities compared to those with visible disabilities. Almost 10 years later, have things changed?
In 2020, U of T registered over 4,500 undergraduate students with accessibility services. Another 1,300 graduate students, who accounted for almost 50 per cent of all master’s students, also identified with accessibility needs. Though it may not be the first thought that comes to mind, it turns out that 90 per cent of students with accessibility needs at U of T have hidden disabilities, 50 per cent of which are a result of mental illness.
Part of the reason why invisible disabilities are often overlooked is that non-visible disabilities are inherently not obviously recognizable. Since we tend to associate what we can see with specific concepts, we associate disability with physical differences, like a broken limb. We assume that if someone looks physically well, then they must be well. But while physical limitations are examples of disability, they are not representative of what it means to have a disability.
“Many different kinds of definitions of disability exist—some more inclusive or robust than others. It all depends on who is doing the defining and often, for what purpose,” explains Professor Pettinicchio in an email interview with The Medium. While official definitions have varied, many have centered around defining disabilities by measuring a person’s ability to participate in society. Old definitions sought to facilitate policy enforcement by focusing on defining disability as physical or functional limitations. Disability benefits were then primarily restricted to those fully unable to work.
Today, definitions target a wider range of individuals in need of accommodation. The Accessible Canada Act now defines disability as any impairment or functional limitation that, “in interaction with a barrier, hinders a person’s full and equal participation in society.” They emphasize that limitations aren’t always physical; they can also be mental, cognitive, sensory, or related to communication and learning. “It is certainly more in line with what the global community of researchers studying disability has moved towards. It also tries to be respectful of the social model of disability, if you note the language, ‘in interaction with a barrier,’” explains Professor Pettinicchio. The social model of disability is in turn primarily concerned with identifying systemic societal barriers that restrict disabled individuals. Respecting each individual equally, the model roots the cause of the problem in society’s failure to accommodate everyone.
Professor Pettinicchio and Maroto use the Washington Group’s definition of disability. The group defines individuals with disabilities as “Those who are at greater risk than the general population in experiencing restrictions in completing specific tasks or activities due to limitations in their basic functioning, such as walking, seeing, hearing, or memory—even if such limitations are ameliorated by the use of assistive devices, a supportive environment, or plentiful resources.” Following the social model, Professor Pettinicchio explains, “This means asking individuals about different kinds of so-called functional limitations and how they experience each of those functional limitations [without presupposing] that limitations are disabling” rather than making assumptions about whether or how individuals are disabled by the context they live in. “These may include […] non-visible disabilities,” he elaborates.
Even though employers are legally obliged to provide their employees with appropriate accommodations, many with non-visible disabilities still struggle to receive the support they require. “There are likely many reasons,” explains Professor Pettinicchio, “from whether individuals feel reluctant to make their disability known, fearing they will be stigmatised, to employers downplaying or not recognizing their disability.”
Research found that roughly only 50 per cent of workers disclose their disability. For some, it is a privacy concern—after all, as long as it does not affect their ability to perform, it’s not their employer’s concern. Others fear that disability disclosure may fracture their job, financial security, or promotion opportunities. When the labour market already disfavours people with disabilities—leaving them with consistently lower incomes as many have to resort to lower-paying jobs that they’re overqualified for—the fear of disclosure is obvious. Often, they’re left relying on other sources of income, like government funding and personal savings.
But while both options (disclosing or not disclosing) come with their own set of pros and cons, the problem remains that, as Professor Pettinicchio’s research found, when shared with employers, those employers are less accommodating toward those with non-visible disabilities. The same storyline may extend to universities, as students experience prejudice and marginalizations.
However, Professor Pettinicchio acknowledges that since 2014, things have indeed changed–slowly, but for the better. “Certainly, change occurs but sometimes change is slow, and it isn’t always linear or progressive,” he notes. He explains that we must look both at institutional changes and attitudinal changes to understand how society is progressing. “Policies are important, but history tells us they aren’t always enough to change people’s attitudes about disability. The question is really, how do we get people to change their attitudes if policies alone aren’t always effective at doing so?” explains Professor Pettinicchio.
Promoting inclusion and representation is threefold, requiring debunking information, assessing policies, and including disabled individuals in decision-making. Pettinicchio explains that this “involves dispelling myths about disability, in say, for example, work and education. And a good way to dispel myths is to actually include people with disabilities within those contexts.” This then requires critically re-evaluating existing policies surrounding inclusion. “And finally, we need to include people with disabilities in decision-making processes if we really want policies to be as inclusive (and effective) as they can be,” he stresses.
Around 20 per cent of Canadian citizens over the age of 15 are living with disability, which means that de-stigmatization and a reframing of our understanding of disability are of key importance. With many employers fearing dishonesty when employees call in sick, acknowledging that non-visible does not equate to non-existent is an essential step that must be taken to establish inclusivity within institutions and uphold human rights.
Features Editor (Volume 49) | features@themedium.ca —Maneka is a third year student completing a specialization in Philosophy with a minor in political science. Previously, she served as one of The Medium’s Staff Writer and Associate Features Editor. As this year’s Features Editor, Maneka hopes to raise awareness, shed light over current issues, and highlight student voices and organizations. When Maneka is not studying, writing, or working, you’ll probably find her binging on, or rather re-watching her favorite shows, listening to music, thinking about her dog, or likely taking a nap.