Identity is the idea of the self understood within and against the social context, a means by which the individual is categorized and located as part of, or set apart from, recognized social, political, and cultural groups. As “the means by which the person comes to join a particular social body” (Siebers 2008b, 15), identity is a symbolic performance, an activity that names and aligns the self, by which the individual is composed as socially significant. It cannot exist, therefore, except in social relief—against a backdrop by which the self is made visible to both self and other. Disability identity has a complex and dynamic history. At its core is the disability rights movement, which for the first time asserted disability as a minority identity and as a platform for collective political action. In the entry on “Minority” in this volume, Jeffrey Brune indicates that Louis Anthony Dexter and Erving Goffman laid the groundwork for understanding disability in political terms in the early 1960s. Activists like Ed Roberts, Paul Longmore, Justin Dart, Judith Heumann, and others, however, were instrumental in developing and acting on this foundation. Fighting institutionalized political, social, and economic discrimination, such activists not only impacted public policy but also shifted and helped to shape a disability community, galvanizing a diverse and diffuse population of disabled people and helping to forge what many have come to understand as disability identity. This politicized identity is grounded in the idea that disability is a socially constructed category, an identity that is shaped by cultural and historical forces rather than being determined primarily by the body.
Viewing disability as a social construction has been a crucial political concept, a mode of resistance to the pejorative constructs of the social majority and received forms of knowledge that insist on disability exclusively as a medical condition or fact of the body. Simi Linton advocates strongly for this constructionist position in Claiming Disability, observing that people with disabilities are “bound together… by the social and political circumstances that have forged us as a group” and referring to group alliance as leading to “civil rights victories and the foundation of a clearly identified disabled community” (1998, 4, 5). Tobin Siebers argues for the centrality of “identity politics… to the future of minority peoples and their quest for social justice and inclusion” (2008b, 17). Understanding disability as a social construct and disability identity as politically constituted are foundational for disability theory and culture, baseline concepts upon which all other thinking and writing about disability identity must be measured.
Historically, disability has been passively constructed by clinical, literary, and social discourses that demean, disparage, and pathologize. The long-standing “medical model” of disability locates disability exclusively in the body, seeing the body as deviant, broken, and in need of a cure performed by nondisabled agents. This model likewise categorizes people with disabilities according to impairments, making it hard for a blind or deaf person to imagine common ground with an amputee, or a person with mental illness or an intellectual disability. Likewise, the charity model of disability seeks to “cure” disability through interventions like fund-raising, which often perpetuate negative stereotypes that interfere with self-determination (Kemp 1981). Pursuing a long-standing thread in literary disability studies, David Mitchell and Sharon Snyder’s Narrative Prosthesis (2000) observes that in literature and other forms of imaginative representation, disability has long been associated with malevolence and corruption. It is essential that the development of the social model, upon which modern concepts of disability identity are constructed, continue to be understood in terms of this preexisting multitude of damaging ableist narratives that continue to inform public discourse about disability identity.
Even as the paradigm of disability identity shifts from the passive construction of disability as “problem” to be fixed to a model in which disabled people increasingly understand themselves and are understood by others as political and social agents, disability theorists and activists have continued to challenge emerging conventions. Some have alleged that disability identity itself is coercive and essentialist, as well as being grounded in narratives of oppression. In response to these critiques, scholars have developed critical perspectives that recognize disability identity as multiple, fragmented, and complex. Indeed, Lennard Davis suggests that “the unstable nature of disability… spells the end of many identity groups,” including disability itself, and that these shifting boundaries are the hallmark of postmodern identity, creating “a dismodernist approach to disability as a neoidentity” (2002, 26). Mindful of key philosophical discourses of the body, Davis’s “dismodernism” is ultimately rooted in Donna Haraway’s influential “Cyborg Manifesto” (originally published in 1985), which asserts that “we are all chimeras, theorized and fabricated hybrids of machine and organism,” and that we ought to take “pleasure in the confusion of boundaries” (1991, 150). But, while such thinking has had a powerful impact on disability theory, not all scholars are ready to deconstruct disability identity, or identity politics in general. Rosemarie Garland-Thomson, for instance, suggests that while ongoing debates in disability studies are sometimes predicated on the “reductive notion that identity studies are intellectual ghettos limited to a narrow constituency,” that is no reason to reject them altogether. She points out that some of the “most sophisticated and nuanced analyses of disability” come “from scholars conversant with feminist theory” (2011, 14), which has a more expansive tradition of “collaborative, interdisciplinary inquiry and a self-conscious cultural critique that interrogates how subjects are multiply interpellated” (15). And while Davis calls attention to the extreme porousness of disability as an identity category, Siebers argues for the importance of “identity politics as crucial to the future of minority peoples.” He calls for a theory of “complex embodiment” that recognizes how bodies and bodily experience structure social experience as much as bodies are subject to existing social frameworks (Siebers 2008b, 17).
Looking forward, disability identity is also increasingly interlaced with other ongoing social, political, and academic explorations. Disability scholars and activists, redressing the early limits of disability studies, are working within critical studies of race and ethnicity and global and postcolonial studies frameworks to expand and complicate ideas of disability identity. Mainstream conversations about biopolitics, including debates about prenatal testing, selective abortion, gene therapies, eugenics, and other emerging technologies of the body, are deeply inflected by the presence of disability and are increasingly overlapping and intersecting with issues of disability identity. Thus, what Siebers might recognize as “complex embodiment” is becoming a more central subject of public and academic discourse. Despite more sophisticated approaches and a more significant role in public discourse, however, the complex sense of disability identity outlined here does not yet occupy a secure place in the public imagination. And early work by disability scholars and activists—those who first identified and agitated against the structural inequities of ableist social institutions—continues to play an important role in shaping the future of disability identity.