Toolkit: Disability 101 - How do we know if we are “disabled” or “non-disabled”?
What is disability? Are all disabilities obvious & do disabilities change over time? Is disability part of “diversity”? What is “self-care,” and how do I take care of myself when I have to work/study/socialize/function?
So, how do we know if we are “disabled” or “non-disabled”?
What if we have a chronic illness or disability that isn’t as obvious as, say, a wheelchair user’s experience? What is an “invisible disability”?
It’s important to note that the American’s with Disabilities Act (ADA) and the disabled, medical, and academic communities define disability very differently: the ADA is preoccupied with the law (the rights of disabled people and their employers) and the medical model is preoccupied with “curing” people deemed “defective” or “diseased.” Since the mid-1990’s the academic community (Disability Studies) has imagined disability as a social construction; in other words, an individual is disabled when they encounter a built environment that is hostile to their lived experience. As one example, a wheelchair user (whose impairment may be anything from paralysis to chronic pain to a connective tissue disease) becomes disabled when doorways are too narrow or missing sidewalk curb cut-outs make access impossible. Disability Studies also distinguishes between “impairment” (the underlying physical or intellectual or emotional experience of the individual) and “disability” (the social, cultural, political, economic, and/or environmental conditions that impede impaired people). Among other definitions, some disability activists remind us that disability is a “shared identity” that unites people along the lines of common social and political experiences.
For all intents and purposes, barriers to access in the workplace/school and underrepresentation/misrepresentation in dominate culture (like negative stereotypes around disability in film/television/print media and/or through familial/communal/academic historical accounts, et cetera) as a result of physical, intellectual, or emotional impairment, are sufficient to proudly claim the identity, Disabled. I say “proudly” here in spite of the negative issue of barriers and misinformation, because I reject all aspects of “ableism” and understand the bodily/intellectual/emotional diversity as defining characteristics of the human experience. My disability is inseparable from my personhood, my identity.
Many people, however, prefer not to claim a disability identity, and, instead, “pass” as non-disabled. And, though we need to challenge a culture that tacitly reinforces “passing” as non-disabled, it’s important to support a person’s decision to pass, as their livelihood, among other things, may rely upon this performance of ablebodiedness. Moreover, passing as able-bodied can be a heavy burden on someone with a chronic illness or disability exacerbated by long work or study hours, so social support (however discreet) is paramount.
Having an unseen (“invisible” or “hidden”) disability is oftentimes especially fraught when many “invisible disabilities” are unstable and change over time. For example, individuals with chronic pain or fibromyalgia may have good days and bad days (sometimes called “flare-ups”): one day you may be able to carry a heavy back pack or a bag of groceries, and the next day you may need a “wheelie” bag or carryout service. Those of us with unstable and invisible disabilities have the added challenge of navigating disability accommodations at work and school; even worse, we may be expected to “look disabled” and our impairments and/or chronic illnesses are treated as if unchangeable, unless they should become worsened. (The common refrain, “you look good today…you must be getting better” is a cringe-worthy, uninformed statement that, in practice, puts our ADA accommodations at risk. As a result, it’s as if we have to perform a culturally identifiable “sickliness” that may/may not reflect our lived experiences in order to maintain ADA services.) And, yet, invisible and unstable illnesses are as pervasive as they are underrepresented or misrepresented in media/film/television.
This is where we would put the activity intro and instructions.
Thank you for completing this lesson. Feel free to continue on with our Disability 101 Toolkit or return to the community room for other resources.