“We live together, we act on, and react to, one another; but always and in all circumstances we are by ourselves. [...] Sensations, feelings, insights, fancies - all these are private and, except through symbols and at second hand, incommunicable. We can pool information about experiences, but never the experiences themselves. From family to nation, every human group is a society of island universes.”
Aldous Huxley, The doors of perception, 1954
When it comes to disability, the idea of solitude presented by Huxley in The doors of perception becomes even clearer: while you can sometimes see a disability’s consequences on another’s body, it is inconceivable that you will be able to step in the other’s shoes and experience their condition. In some cases, where an individual’s disability is entirely invisible, the idea that they are different becomes even more mysterious. Though disability affects over one billion people throughout the world and may be experienced by everyone, temporarily or permanently, at some point in their lives (World Health Organisation, 2020), it is still generally overlooked and misunderstood.
The most accessible and primary source of disability-related information is its cinematic image (Markotic, 2008; McRuer, 2019; Chasnoff, 2020). Indeed, it is through the portrayal of disability in movies and other forms of media that most construct their ideas and opinions of this concept (Longmore, 1985; Safran, 1998; Sandhal, 2019). This has been proven to be problematic as the representation of disability on screens, in fact, presents and encourages narrow stereotyped views that are not representative of the community of people with disabilities (Longmore, 1985; Safran, 1998; Markotic, 2008; Sandhal, 2019; Chasnoff, 2020). Several issues arise from the lack of accurate representation and information on this topic. Among these issues are the spread of stereotypes leading to a misshaped perception of disability by the audience (Longmore, 1985; Chasnoff, 2020), and the absence or the wrongful application of accommodations, originally supposed to help people with an impairment navigate an able-centric world (Moon, 2012; Almog, 2018).
To act on these issues, it is crucial to understand what the concept of disability encompasses. Though the definition of disability has been the subject of debates since the 1970s (Iezzoni, 2008), most structures and organizations recognize disability as a physical or mental impairment resulting in the alteration of one’s capacity to complete one or several major life activities (Iezzoni, 2008). However, for an accurate understanding of the concept, another dimension should be considered: disability not only arises from one’s health condition but from its interactions with environmental (physical and social) circumstances (Rudnick, 2006; Almog, 2018). Deaf or hearing-impaired individuals, for instance, would not be disabled in a world in which no one can hear, or in a completely silent world. Indeed, in such a scenario, them having a hearing loss would not impact their capacity to complete essential tasks and flourish within their communities. The World Health Organisation includes this component in its current definition. Disability is now described as “the interaction between individuals with a health condition (e.g., cerebral palsy, Down syndrome and depression) and personal and environmental factors (e.g., negative attitudes, inaccessible transportation and public buildings, and limited social supports)” (World Health Organisation, 2020).
Entering higher education is generally acknowledged as demanding for students, regardless of their abilities (Spassiani et al., 2017; Almog, 2018). In addition to personal and social changes, students have to adjust to new academic requirements, assess their interests, and plan their curriculum (Goode, 2007; Almog, 2018). Studies on the perception of this transition by students with a disability show that the latter creates additional pressure that can negatively affect one’s learning and social experiences (Goode, 2007; Spassiani et al., 2017; Almog, 2018). This is because students with a disability, when entering higher education, are psychologically and physically coming to terms with their condition (Goode, 2007). Besides studying for their classes and adjusting to university life, they have to learn how to manage their identity and deal with negative attitudes from their peers and the staff (Goode, 2007; Almog, 2018). Most importantly, students with a disability are given the responsibility to manage their access to education and expected to proactively engage in a time- and energy-consuming battle for rights to which they are entitled (Goode, 2007; Almog, 2018). These situations are not only socially and emotionally challenging, they also impact one’s ability to concentrate on what should be one of a student’s primary concerns: studying.
It is from such struggles that the idea of the Disability Handbook (DH) arose. There are, at the moment, very few resources for university students and staff to inform themselves about the disabilities present in their community. Moreover, there are minimal indications regarding the accommodations available to make studying and teaching in situations related to disability easier. The DH aims to be a reliable source of information, and a set of guidelines for whoever wishes or needs to inform themselves about the disabilities they are most likely to encounter. By creating this document, I aim to provide a reliable source of information I wish I had had when I first came to university. As a deaf student myself, I have been required to research the options made available to students with a disability and proactively reach out to the university support system. In addition to being confronted with a lack of knowledge and awareness, I experience great solitude in my search for reliable accommodations. Indeed, as “the disabled student”, I have been the one expected to anticipate challenging situations and automatically know how to navigate them. Though past experiences can be helpful, one can never predict all the difficulties that may present themselves. By creating the DH, I hope to help other students who may struggle as I did while looking for the right accommodations and provide them with a companion, which I hope will be welcome in their own island universes.