What is Disability?
- No single definition or model of disability is sufficient for understanding the diversity of disabled people’s experiences.
- The social model of disability is a rejection of individualized, pathologizing framing that ignores the role of social and political processes in constructing disability.
- Many places of higher education brandish their inaccessibility, e.g. steep steps and gatekeeping, as virtues.
- Disability justice demands that we recognize the intersections of disability with other forms of marginalization and oppression and center the voices of the most harmed.
As with the term, neurodivergence, there are narrow and expansive conceptualizations of disability, though how people identify and relate to disability is highly complicated. No single definition or model of disability is sufficient for understanding the diversity of disabled people’s experiences. Medical- and rights-based frameworks of disability tend to constrict disabled identity through an impairment-focused lens and center the story of the individual struggle, usually focused on overcoming one’s disability. Disability justice demands a more expansive approach, recognizing the intersections of disability with other forms of marginalization and oppression, focusing on building a disabled community and centering the voices of the most harmed.
From early times, folk conceptions of disability have viewed disability as synonymous with or markers of bad character, misfortune, and divine punishment. In popular stories, from the classic fables to modern Hollywood films, the villains are often portrayed as physically nonconforming or mentally ill. These depictions perpetuate the notion that disabled people are a danger or threat to society, often suggesting that they are motivated by revenge for being outcast, and that society is therefore in the right to criminalize and exclude them.
Functional accounts of stigma from evolutionary theory, on the other hand, suggest that because humans strategically coordinate in groups to identify markers of difference, and form shared beliefs about individuals who are perceived as unlikely to reciprocate, cooperate, possess capital, or otherwise maximize the in-group’s social and economic advantages, it is the process of stigmatization and exclusion that creates disability. Judgments about “fitness” are socially constructed and reified by social norms and the built environment. By denying or limiting access to resources, the in-group maximizes its advantages, and disables others. As Imani Barbarin observes, “every form of marginalization leads to disability.”
Access-centered frameworks of disability thus focus on the social processes and human engineered environments that create disability by design. Racialized and marginalized people, especially Black people and Indigenous people, often become disabled in these contexts, because colonialism, white supremacy, and racism destroy and limit access to social and material resources on top of creating repeated traumas that have deleterious effects on the body/mind. In higher education, because anti-Blackness is rampant, young Black people are often discouraged from going to college or end up dropping out, which can have cascading effects in later life by restricting access to employment and health care, which in turn can lead to or aggravate disability. Capitalism produces disability by paying workers unlivable wages and demanding that they work longer hours without health benefits in unsafe environments. Trans people become disabled when they are denied access to gender-affirming health care. People with 20/50 vision are disabled when they do not have access to corrective lenses, yet many people with 20/50 vision who wear glasses would not identify as disabled.
Image description: In the foreground, stairs upon stairs lead up to Low Memorial Library on the campus of Columbia University in New York City. In the background, at the top of the steps, is the library, whose portico features ten large columns in the Classical architecture style. The words, "The Library of Columbia University," are inscribed on the frieze above the columns. In the mid-ground, halfway up the steps, sits a statue of the Alma Mater, also known as the "nourishing mother." The bronze figure, clad in a bulky gown and crowned with a laurel wreath, sits on a throne with both arms mid-raised. A large book, representing knowledge, sits open on her lap. Many places of higher education brandish their inaccessibility, e.g. steep steps and gated communities, as virtues.
By centering issues of access, we can better understand why disability can be transient or intermittent; why disability often results from marginalization; and why disabled identity is independent of diagnosis. Western folk conceptions of disabled identity frequently revolve around the question of who receives public assistance and who deserves to receive that assistance, and create hierarchies of “impairment,” often legitimizing only the most visible disabilities, and often delegitimizing the needs of racialized disabled people. Hence, the US and the UK tend to place a premium on creating systems that gatekeep benefits and police disabled people, not simply because disabled people are not valued in society, but because policymakers know very well that “every form of marginalization leads to disability.” In higher education as well, many disability and accessibility resource offices spend disproportionate energy on gatekeeping accommodations. And among the most popular stories in Western societies are moral tales involving devious characters who game the system, a testament to the cultural importance placed on judging disabled people.
Medicalization and pathologization are the dominant processes through which access is gatekept in Western societies. A medical model of disability gatekeeps disability by centering diagnosis and biomedical essentialism, elevating the authority and expertise of clinicians over the knowledge and experiences of actually disabled people, and restricting access to treatment and resources. Such individual-centered models locate “the problem” within an individual, rather than society. Consequently, instead of making our built environments accessible for everyone, the goal of medicine is to change disabled body/minds to better fit with abled society. Proponents of these models are often political elites and tech investors whose promises of liberation through technology have the unfortunate or perhaps intended effect of diverting public investment away from societal projects that could immediately improve access for all.
The social model of disability was created by disability scholars as a rejection of the individualized, pathologizing framing that ignores the role of social and political processes in constructing disability. While disability can be mitigated through inclusive social and architectural engineering, however, contemporary scholars and activists also note that the social model does not adequately address how chronic pain and other biologically based pathology cannot simply be designed away. Despite its imperfections, however, the social model of disability is important for highlighting how the ideologies of white supremacy, meritocracy, capitalism, and eugenics create and perpetuate disabling conditions.
For further reading:
Patty Berne, Disability Justice
Published on May 22, 2023.