What it Means to Commemorate Disability Pride </strong>
Edited By Rose Perry, Ph.D. & David Putrino, P.T., Ph.D.
This month, at the height of the COVID-19 pandemic in the United States, in the midst of ongoing Black Lives Matter protests against police brutality, and on the heels of LGBTQ Pride Month (which in 2020 marked the 50th annual Pride March), it’s time to bring another important conversation surrounding equity, inclusivity, and accessibility to the forefront. This July marks 30 years since the historic signing of the Americans with Disabilities Act (ADA), a groundbreaking piece of legislation protecting people with disabilities against discrimination in areas including employment, education, health care, transportation, and housing.
The ADA, which was signed into law on July 26, 1990, made the United States the first nation to adopt a formal declaration of the basic civil rights of people with disabilities. Now, as the ADA turns 30, it’s a particularly poignant moment to amplify and address the perspectives and needs of people living with disabilities, as well as to confront head on the ways in which our societal views toward disability lay the groundwork for oppression.
In the United States, about 1 in 4 adults, or 61 million Americans, have some form of a disability [1]. The ADA defines a disability as “a physical or mental impairment that substantially limits one or more major life activity.” According to 2016 findings from the Center for Disease Control and Prevention (CDC), people with disabilities make up the largest and most diverse minority group within the United States, representing all abilities, ages, races, ethnicities, religions and socio-economic backgrounds. Still, throughout mainstream society, individuals with disabilities tend to be portrayed as “unlucky others.”
In her 2014 TED Talk, “I’m not your inspiration, thank you very much,” late comedian, journalist, and disability rights activist Stella Young discussed the concept of “inspiration porn” or “objectifying disabled people for the benefit of nondisabled people.” In an ableist society that characterizes typical abilities as superior to disabilities, depictions of—and attitudes toward—people with disabilities are largely framed in a one-dimensional way. In her talk, Young described how people with disabilities are used as “objects of inspiration.” “You can look at them and think that things aren't so bad for you, to put your worries into perspective,” Young said. “to motivate you and make you think, ‘Well, however bad my life is, it could always be worse. I could be that person’.”
People with disabilities are exposed to ableism and discrimination on a regular basis, and not just in the form of condescending (or abusive) interpersonal actions. Ableism is ingrained throughout society on a systemic level. The World Health Organization (WHO) describes common barriers experienced by people with disabilities as “factors in a person’s environment that, through their absence or presence, limit functioning and create disability.” These factors include aspects such as “a physical environment that is not accessible; lack of relevant assistive, adaptive, or rehabilitative technology and devices; negative attitudes toward people with disabilities; and services, systems, and policies that are either nonexistent or that hinder the involvement of all people with a health condition in all areas of life” [2].
Even the mainstream medical model of disability discriminates against people with disabilities based on the belief that “typical abilities” are superior [3]. By this framework, physical or mental impairments and pathologies are considered “not functional,” and should be “fixed” or “cured” with the help of an outside force. The ideology behind the medical model of disability is still largely embedded in modern approaches to health care in the U.S., as well as education. For example, even after the ADA banned discrimination in the workplace, high unemployment persists for people with disabilities. Only 31 percent of working-age people with disabilities people held jobs in 2019 compared with 75 percent of those without disabilities, according to statistics from the U.S. Department of Labor.
In contrast to the medical model, the “social model of disability” suggests that disability exists due to the systemic disadvantages that society creates for people with disabilities. In other words: people are actually disabled by the way in which society acts or does not act, for example, by failing to ensure equal access to health care or accessible public spaces. From this social model of disability, a “Disability Pride” movement has stemmed to promote that having a disability is a natural part of human diversity that should be openly embraced—even in an ableist society—and that this pride can be used as a tool to fight ableism by establishing dignity and independence for disabled individuals in society.
According to the National Council on Independent Living (NCIL), the desired outcome of promoting Disability Pride is to affirm one’s self-worth and agency as a disabled person. A hugely important element of this notion incorporates intersectionality—the idea that people have multi-dimensional identities such as being disabled, queer, or of a certain race—and that these identities meld; they are not mutually exclusive, nor is one dominant over the others. But while encouraging people with disabilities to celebrate their unique talents and attributes is hugely important, nondisabled people must be active allies to help shift societal views toward disabilities. As writer and Facioscapulohumeral (FSHD) Muscular Dystrophy advocate Trisha Lynn Sprayberry wrote in an op-ed, “Disability Doesn’t Need Your Pity”:
“The basic civil right of persons with disabilities is universal accessibility: Jobs, public service, accessible public spaces, telecommunications, technology, and healthcare. Whether we have the means and intent to accommodate the demands of disability personally or socially, or if we struggle to understand a view that we cannot fathom being a part of, we all need to come to a better understanding of what it means to be disabled; we as a society need to ask ourselves how we can better help, instead of arguing about why or whether or not it’s worth it.”
In-text References
[1] Okoro CA, Hollis ND, Cyrus AC, Griffin-Blake S. Prevalence of Disabilities and Health Care Access by Disability Status and Type Among Adults — United States, 2016. MMWR Morb Mortal Wkly Rep 2018;67:882–887. DOI: http://dx.doi.org/10.15585/mmwr.mm6732a3
[2] World Health Organization, International classification of functioning, disability and health. Geneva:2001, WHO. p. 214.
[3] Goering S. Rethinking disability: the social model of disability and chronic disease. Curr Rev Musculoskelet Med. 2015;8(2):134-138. doi:10.1007/s12178-015-9273-z