Now You See Me, Now You Don’t

How students with invisible disabilities navigate post secondary education

By Catherine Stratton

People pursuing further education have most likely been subjected to skepticism regarding the legitimacy of their invisible disability.

I am horrified, but not surprised, by the arrogant and ill-informed positions presented by academics, such as in the widely criticized article, “Why I Dread the Accommodations Talk” by Professor Gail Hornstein. While her opinion piece focused on mental illness, the ideas can be extended to students with myriad medical conditions that fall under the rubric of invisible disabilities. For too long, ableism has sullied academic spaces and educators have been permitted to remain ignorant to the medically fragile.

Invisible. Even the term used to describe this group of students highlights their vulnerability. Some people might believe that not to be an apparent minority is a blessing. Instead, their struggles might show up in more subtle manners, like when these students have flare-ups, medical appointments, extensive medical tests and/or treatments that wreak havoc with their schedules. But the nuanced position of invisibility often presents such individuals with the battle of choosing to conceal their condition or not, out of fear of resentment or disbelief.

By hiding their invisible disabilities, such students are less able to live authentically among their peers by silencing a part of their identities which may have been internalized. Many theorists have posited that stigma may instigate social isolation. (Hatzenbuehler, et al., 2013). Their additive challenge is that their source of stigma is their health status—this is unlike the social determinants of health experienced among sibling marginalized groups; it is social exacerbation of already poor health.

Authority figures can create additional barriers to their disabled students’ achievements as made clear by Hornstein who professed to know more about students’ needs than themselves and obliged them to fulfill the heroic archetype: “Our challenge as faculty members is to encourage thoughtful coping skills and resilience…and to respond appropriately and help students to learn what’s a crisis…to understand when it is reasonable to ask for the course structure to be changed…Those are crucial life lessons of adulthood, and we aren’t helping…by overprotecting them.”

Sentiments like Hornstein’s are an extension of social constructions and deeply engrained ideas about people with different abilities which consequentially disbar them from participating actively in their communities (Kreider, et al., 2015). Most of these students have already been banned from any form of ‘overprotection’ from life’s adversity, having faced chronic, sometimes severe, health challenges. Further, these students are tremendously resilient; they have navigated a system that is inherently isolating and exposes them to systemic stigma.

Hornstein’s is not an isolated opinion. Michael Schlesinger, a Professor from the University of Illinois, explicitly refused to provide supplementary materials to a student with a documented learning disability. Another story surfaced recently about a young man, admitted to University of Notre Dame, who was refused a private dorm room which he needed for disability-related reasons because it would “create an unreasonable burden on the University.” Common rhetoric that is espoused by academics is that accommodations provide ill and disabled students with an unfair advantage. I can’t fathom what that might be, given that accommodations are merely a means to counteract their disadvantaged position. I reckon that this notion of an unfair advantage returns to the underlying problem of invisibility. You would never say that providing someone who cannot walk with a wheelchair is an “unfair advantage”. This issue of purported advantage is an important reminder of the difference between equality and equity in social justice theory, which refer to the sameness of resources versus opportunities, respectively (Whelan, 2017).

Despite satisfying the requirements to enter an educational program and having to traverse a chaotic bureaucracy to establish accommodations, those with disabilities are not welcomed in the communities to which they belong (Hannon, 2006). One difficulty faced by invisibly disabled people is a preconception with what they are capable of achieving. A study in Ireland has shown that the primary reason for negative attitudes towards disability was the lack of visibility of people with disabilities in mainstream society, stemming from inexperience in learning or living alongside disabled people (Hannon, 2006). This lack of integration results in a marginalization of disabled individuals and perpetuated ignorance on the part of abled people.

So how do we move forward? Well, why don’t we believe that which we cannot see? Don’t assume, ask and do not judge what you do not understand. We have a long way to go to ensure that the chronically, invisibly infirm and disabled have equal access to education and experience. They tire of having to prove something they live with everyday, always anticipating the disbelief that results from sharing something that cannot be seen by anyone else.

So, yes Professor Hornstein, the invisibly disabled dread the accommodations talk, too.

Catherine Stratton, originally from Toronto, is currently a graduate student studying Chronic Disease Epidemiology at Yale University. She is focusing studies around the impacts of invisible illness and issues unique to para-athletes.

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