Disability

As a keyword in American studies and cultural studies, the site of a political movement, and the name of an interdisciplinary field, “disability” articulates vital connections across the many communities of people with disabilities, their public histories, and a range of cultural theories and practices. People with disabilities have too often been rendered invisible and powerless because of a mainstream tendency to valorize the normal body. As a result of disability activist work emerging from the civil rights movement, legal reforms, and grassroots activist work, the framing of disability has shifted from an emphasis on “disability” as a medical term to one of disability as a social construction. In the 1980s, disability activists began to move into the academy and to formulate a wide range of scholarship around the keyword. In the first phase, their work centered largely on the analysis and reform of public policy. By the early 1990s, a second phase in the humanities began to analyze the implications of representation on how people think about disability. In more recent years, disability scholarship has shifted to a focus on theories of intersectionality (the ways in which disability interacts with other modes of power and privilege) and transnationality (the ways in which nation-based frames of analysis misrecognize networks of affiliation that cross national borders).

Among the factors that contributed to the development of the term and its specific genealogies in relation to the rise of disability studies, the most prominent are the civil rights movement of the 1960s, disability activism in the 1960s and ’70s, and the implementation of the Americans with Disabilities Act (ADA) in the 1990s. Spearheaded by Ed Roberts’s advocacy for independent living, disability activism in the United States began in the 1960s at two university campuses, the University of Illinois and the University of California–Berkeley, where demands for alternatives to the previously dominant rehabilitation model led to the creation of the Center for Independent Living. This activism led to a number of important shifts in U.S. law, such as Section 504 of the Rehabilitation Act of 1973, intended to grant the right of equal access to federal programs to people with disabilities, and the Education of All Handicapped Children Act (renamed IDEA in 1990). The latter act led to the mainstreaming of children with disabilities by mandating equal access to public education and one free meal a day for all children with physical or mental disabilities. Equal access to public transportation also became more common as a result of grassroots activism and subsequent legal interventions. The 1990 ADA accords people with disabilities the right to protection against employment discrimination.

While these legal and policy reforms were promising, law and practice were and often are not in accord, as evinced by the fact that a large percentage of the cases brought before the Supreme Court under the ADA have not been decided in favor of the disabled person (R. O’Brien 2001). Partly as a result of this gap, recent work on disability has turned to questions of cultural representation and the impact of those representations on social practice. This shift in the ways in which scholars and activists approach the question of disability highlights how the disabled body—whether diseased, deaf, blind, physically handicapped, or cognitively different—marks the other of the able body, an unmarked norm that gained its force as an implicit corollary to Enlightenment notions of citizenship and work. From the 1860s to the 1970s, so-called ugly laws institutionalized this pattern of normalization in a number of U.S. cities by keeping individuals with “unsightly” or “disgusting” disabilities out of public spaces and off the streets (Schweik 2009). In Chicago, for example, the 1881 law read, “No person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense” (Chicago Municipal Code, § 36034). At the turn of the twentieth century, eugenics programs, fostered in part at the Carnegie Institution’s Cold Spring Harbor complex in Long Island, New York, furthered this approach by implementing state-sanctioned sterilization as a means of limiting the proliferation of the disabled and other populations deemed undesirable (Carlson 2001; Black 2003). Recent disability scholarship has traced the transnational impact of these policies, including the implementation of killing centers in Nazi Germany (Snyder and Mitchell 2006). The common pattern of removing the disabled from everyday life reinforced and continues to reinforce the valorization of the able-bodied paradigm, the authority of the medical model of treatment to classify and to control the disabled, and the common understanding of the disabled body as a site of abjection, all based on an “out-of-sight, out-of-mind” logic.

These various attempts to codify, isolate, and fix the disabled were congruent with nationalism’s tendency to classify and regulate diverse populations. The institutionalization of the deaf provides one example of this tendency. Beginning in the early nineteenth century in Europe and spreading quickly to the United States, the regulation of deaf people is illustrative of the drive to remove people with disabilities from the cultural mainstream, thus creating institutional sites where they could begin to form unique subcultures. The first school for the deaf, the American Asylum for the Education and Instruction of Deaf and Dumb Persons, was founded in 1817 by Thomas Hopkins Gallaudet in Hartford, Connecticut; by 1863, there were thirty-two such schools in the United States. This form of institutionalization led to the education of a large deaf community as well as the development of a community identity enabled by a shared language, American Sign Language (ASL). In response to these developments, proponents of nationalism in the period advocated for monolingual societies, resulting in the suppression of the use of sign language and the promotion of oralism. Educators influenced by social Darwinism argued that the use of sign language indicated intellectual inferiority and lack of social and cultural progress. Even in deaf schools, new technologies and elocution methods were developed to train the deaf to behave as if hearing. It was not until disability activism began to gain force in the 1960s that the Gallaudet University professor and linguist William Stokoe validated ASL as a full language in its own right through his extensive research into its linguistic structures (Stokoe, Casterline, and Croneberg, 1965). This research enabled deaf schools such as Gallaudet University to incorporate ASL in their instructional methods and the deaf community to be identified as a linguistic minority analogous to ethnic minorities. It led the deaf students at Gallaudet to protest successfully for the hiring of the first deaf university president in 1988 (Christiansen and Barnartt 2002; Burch 2004).

This history of a single disability demonstrates how social practices maintain and reinforce disability as a category of the marginalized other, what the consequences of that othering are, and how these techniques of othering are exacted on the body. These practices have serious implications not only for how we treat the disabled but also for how we understand the limits of the human body, since disability is the only minoritized identity group that can be joined by what activists call TABs, the “temporarily able-bodied.” Scholars, along with activists and people with disabilities, have frequently remarked on the characteristic first response of the able-bodied to the disabled as being one of unease (L. Davis 1995). Subjected to strong cultural mores about the normal body as a site of orderliness, even progressive and radical able-bodied responses tend to repress anxiety about dealing with sensory, physical, or cognitive differences (E. Samuels 2002). Yet there is much to be gained from a critique of knowledge produced about and through theories of the body, difference, and disability. Donna Haraway’s (1991) work on cyborgs, for instance, is helpful for its articulation of a disability identity and its theorization of the use of prosthetics as a mixture of human and machine. Similarly, Rosemarie Garland-Thomson has applied Eve Kosofsky Sedgwick’s (1990) distinction between “minoritizing” and “universalizing” theories of sexual difference to disability. While the former links the politics of disability to a specific population, the latter opens onto a broader understanding of disability as “structuring a wide range of thought, language, and perception” (Garland-Thomson 1997, 22; see also Porter 1997).

As this brief survey indicates, disability studies, alongside related work in American studies and cultural studies, seeks to revise the place that disability holds in various cultural imaginaries, challenging the tendency to consider disability a personal problem, a source of pity or charity, or something that can be overcome with the help of medical intervention. The consolidation of a discrete interdisciplinary field of disability studies emerged through the pioneering work of Paul Longmore (Longmore 2003; Longmore and Umansky 2001), Simi Linton (1998), Rosemarie Garland-Thomson (1997), David Mitchell and Sharon Snyder (2001), and Lennard Davis (1995). At the same time, a number of scholars are working at and across the edges of that field to create new connections regarding the significance of disability, including linkages to genetic engineering (Asch and Fine 1988; Asch and Parens 2000), immigration and labor studies (Longmore 2003; Baynton 1998), literary studies (Mitchell and Snyder 1997, 2001), everyday life (Garland-Thomson 1997; R. Adams 2001; Schweik 2009), performance studies (Kuppers 2003, 2011; V. Lewis 2005; Sandahl and Auslander 2005; Kochhar-Lindgren 2006; Henderson and Ostrander 2010), philosophy (Silvers 1998), medical humanities (S. Gilman 1995), deaf and race histories (Krentz 2007), deaf history (Brueggeman 2009), and queer and disability identity (McRuer 2006; McRuer and Mollow 2012). Across all of this work, the framing of disability as a cultural problematic rather than a fixed category extends important work already being done on the body, eugenics, biopolitics, immigration, nation building, and the practice of everyday life.

While this innovative scholarship has advanced a more nuanced understanding of the underlying assumptions that make disability the other of normalcy, one of the problems in using disability as an organizing trope is that it often artificially consolidates a wide array of physical and mental differences under a single term. Like other keywords that organize identity-based legal and cultural fields, the term helps to politicize our understanding of disability but also tends to create an abstract concept in which the particularities of divergent histories are erased. In order to recuperate a more embodied reference point for disability and to claim a more visible social space in the public sphere, a number of disability scholars have begun to address the importance of reclaiming individual bodily experience through art, performance, and literature (Corker 2001; Mitchell and Snyder 2001; Snyder and Mitchell 2001; Siebers 2004; Kochhar-Lindgren 2006). With regard to the fields of American studies and cultural studies, the ongoing challenge will be to identify disability as a discrete category, while also pluralizing our understanding of its manifestations. Considered as a keyword that indexes this challenge, “disability” has newly problematized and invigorated work on the body by naming an identity category that enables us to understand the lived experiences of bodies and their many sensorial differences.

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