75 pages • 2 hours read
Disability Visibility: First-Person Stories from the Twenty-first Century
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Background
Critical Context: Disability Studies
Disability Visibility is ideologically rooted in disability studies. Many of its contributing authors are active disability studies scholars, including editor Alice Wong, and the book relies on disability studies concepts, terms, and topics (e.g., “crip,” “crip time,” “ableism,” “bodymind,” “accessibility,” “models of disability”).
Disability studies is an academic discipline that emerged in the late 20th Century. Traditionally, the study of disability was approached from a medical and/or clinical perspective. The disability studies perspective provides a counterpoint that centers the social experience of having a disability rather than the scientific study of disabling conditions. The first disability studies journal, Disability Studies Quarterly, was originally issued in 1986. The first disability studies program was launched at Syracuse University in 1994. At the time of writing, there are several major disability studies journals, and degrees in disability studies are awarded at hundreds of accredited universities around the world.
While disability studies is generally considered a subgenre of critical theory, it is also interdisciplinary (using methodologies and standards from multiple disciplines) and multidisciplinary (drawing knowledge from other disciplines). Popular topics in disability theory include intersectional identity, disability history, accessibility issues, infrastructure and design, legal issues and advocacy, and sociopolitical identity.
Disability studies typically center the disabled perspective. Originally, this encompassed persons with physical disabilities and chronic illnesses, such as deafness, blindness, dwarfism, cerebral palsy, and autoimmune conditions. In recent decades, there has been a push to include cognitive and psychiatric disabilities such as developmental disorders, mood disorders, psychosis, and addiction.
A central tenet of disability studies is the differing models of disability. The social model of disability was developed in the 1970s and 80s as a counterpoint to the dominant medical model of disability. The medical model of disability regards the locus of one’s disability as internal: A disabled person’s daily functioning is inhibited strictly because they have a medical problem. The social model of disability argues that these impairments are not essential elements of disabled life; rather, disabled people’s functioning is limited because society is not built for them, socially or architecturally. Though the social model was the accepted baseline in disability studies for several decades, the medical and social models of disability have both been criticized and synthesized by numerous disability scholars, and the field is constantly evolving as new disabled voices emerge.
Political Context: Disability Justice & Civil Rights
As a disability studies text, Disability Visibility is necessarily tied to disability justice and disability civil rights issues. Disability studies developed as an outcropping of the disability civil rights movement (and its sibling movement, mad liberation, which centers psychiatric and cognitive disabilities).
The modern American disability civil rights movement took shape in the 1960s. It was sparked by a combination of social changes (such as the Black civil rights, queer liberation, and feminist movements), technological advancements (which paved the way for new and improved assistive devices), and post-war visibility (respected veterans returned from World War II and the Korean War with physical and psychological disabilities). Through legal advocacy, protests, and educational initiatives, the disability civil rights movement created social change that helped transition disabled people out of the margins of mainstream society. Disability civil rights also introduced the notion of disability as an identity and source of pride, rather than a point of shame.
The decades before the disability civil rights movement were rife with challenges. Throughout history, disability was widely regarded as shameful and repulsive, and people with psychiatric and cognitive disabilities (the “insane” and “feeble-minded”) were routinely stripped of their rights and committed to overcrowded state asylums, which were essentially prisons. Persons with physical disabilities were regarded as invalids; famously, President Franklin Delano Roosevelt hid his paralysis from the public for this reason. From 1867-1974, “unsightly beggar ordinances” (nicknamed “ugly laws”) banned those with so-called “unsightly or disgusting” deformities from appearing in public places. In some cases, disabled people such as those with dwarfism, amputations, and macrocephaly were only able to make a living by displaying their physical differences in curios, circuses, and on film. The late 19th and early 20th centuries also saw a rise in eugenics, an ideology that commonly warned against allowing “genetically inferior” people to reproduce. This resulted in the mass sterilization of disabled people.
Disability rights advocates saw their first major victories in the early 1970s, when “disability rights activists lobbied Congress and marched on Washington to include civil rights language for people with disabilities into the 1972 Rehabilitation Act” (“A Brief History of the Disability Rights Movement,” ADL, 5 Mar. 2022). The 1970s also saw the repeal of ugly laws and a push toward psychiatric care reform. In 1990, the Americans with Disabilities Act (ADA) was passed. The ADA was created to diminish discrimination against disabled people and increase accessibility in public and professional settings.
The push for social and legal reforms continues today. Popular topics among disability justice advocates include issues around accessible infrastructure, access to medical and psychiatric care, access to assistive devices, marriage rights, reproductive justice, and debates around highly divisive topics such as assisted suicide programs.
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