July 6, 2004
The way we imagine disability in America is changing. Disability is becoming a diversity, inclusion and civil rights issue, rather than simply a medical problem, charity case or personal misfortune. The disability rights movement and civil rights legislation such as the Americans with Disabilities Act of 1990, which mandates full integration and prohibits discrimination, underwrite such changes.
People with disabilities are leaving the closet and the nursing home and entering workplaces, courtrooms and public debates.
A deaf Miss America reigned; Superman became quadriplegic; Barbie came out as a wheelchair user; Gallaudet University students demanded a deaf president; Casey Martin accessed golf tournaments with a cart.
The largest minority group in the United States, people with disabilities make up 30 percent of the U.S. population. Approximately one-third of entering college freshmen report having a disability. Disabled people are a vibrant and vocal constituency. Disability, we are learning, is a fundamental facet of human diversity.
Critical analysis of disability lags behind that of race, gender, ethnicity, sexual orientation and class both inside and outside the university. Still, there has emerged what I call the New Disability Studies, exploring disability as a historical system of thought and knowledge that represents some bodies as inferior--as in need of being somehow changed in order to conform to what the cultural imagination considers to be a standard body. To do this, it focuses on the myriad sites where culture elaborates disability.
Disability is everywhere in culture--Oedipus to the human genome--once scholars and teachers know how to look for it. The New Disability Studies ranges across such discourses as history, art, literature, religion, philosophy and rhetoric, engaging the critical conversations of aesthetics, epistemology, cultural studies, ethnic studies, feminism, the history of the body and issues of identity. It frames disability as a narrative about human differences we can chart over time, an interpretation of physiological and mental traits we can query, an exclusionary discourse we can excavate, and a fiction about bodily variation we can reveal.
Most important, these narratives shape the material world, determine the distribution of resources, inform human relations and mold our sense of who we are. In short, then, the New Disability Studies interrogates disability; it analyzes and challenges our collective stories about disability, redefining it as an integral part of all human experience and history.
Humanities scholarship in particular recognizes that disability is everywhere. For example, the blind, mad, lame, crippled and unusually embodied have particularly fired the imaginations and underwritten the metaphors of classic Western literature. From Sophocles to Toni Morrison, disability confers distinction on protagonists and drives narrative. Our first literary hero, Oedipus--whose name means "damaged foot"--begins a tradition that continues through Shakespeare's Richard the Third, Melville's monomaniacal amputee Ahab and Faulkner's modern monologist Benjy Compson.
The aim of much disability studies is to reimagine disability, to challenge our collective representations of disability as an exclusionary and oppressive system rather than as the natural and appropriate order of things. This accomplishes important cultural work. First, it shows disability as a significant human experience that occurs in every society, every family--and most every life. Second, it helps us accept that fact. Third, it helps integrate disability into our knowledge of human experience and history and to integrate disabled people into our culture.
The New Disability Studies points out that ability and disability are not so much a matter of the capacities and limitations of bodies, but more about what we expect from a body at a particular moment and place. Stairs disable people who need to use wheelchairs to get around, but ramps let them go places freely. Reading the print in a phone book or deciphering the patterns on a computer screen are abilities that our moment demands. So if our minds can't make sense of the patterns or our eyes can't register the print, we become disabled. In other words, we are expected to look, act, and move in certain ways, so we'll literally "fit" in to the built environment. If we don't, we become disabled.
All bodies are shaped by their environments from the moment of conception; we transform constantly in response to our surroundings. The transformations that occur when body encounters world are what we call disability. The human body varies tremendously in its forms and functions. Our bodies need care; we all need assistance to live. Every life evolves into disability, making it perhaps the essential characteristic of being human. In spite of or perhaps because of this, the subject of disability both discomforts and compels many people.
Our society emphatically denies vulnerability, contingency and mortality. Modernity pressures us relentlessly toward standardizing bodies. This goal is largely now accomplishable in the developed world through technological and medical interventions that materially rationalize our bodies under the banner of progress and improvement.
Indeed, despite the popular call for "diversity," a deep and seldom challenged project of creating bodily uniformity marches forward in practices such as genetic engineering, selective abortion, reproductive technology, so-called physician-assisted suicide, surgical normalization, aesthetic standardization procedures and ideologies of health and fitness. A kind of new eugenics that aims to regularize our bodies supports all of these practices. Although we value biodiversity in our environment, we devalue physical and mental variety. We expect medicine to wipe away all disability. As a consequence, when disability does enter our lives, often our only available responses are silence, denial, shame or determined and desperate vows to "fight it." Seldom do we imagine disability as an aspect of all lives that our society, government and community should accommodate and include.
What would happen if our society fully recognized and validated human variation? What if we cultivated rather than reduced this rich distinctiveness? How would the public landscape change if the widest possible diversity of human forms, functions and behaviors were fully accommodated? How would such an understanding alter our collective sense of what is beautiful and proper? What would be the political significance of such inclusion? Applying the vibrant logic of biodiversity to humans reimagines a public sphere that values and makes a tenable space for the kinds of bodies variously considered old, retarded, crippled, blind, deaf, abnormal, ugly, deformed or excessive.
Disability is not a natural state of corporeal inferiority, inadequacy or excess--or a stroke of misfortune. Rather, it is a culturally fabricated narrative of the body, similar to the fictions of race and gender. The disability/ability system produces subjects by differentiating and marking bodies. Although this comparison of bodies is ideological rather than biological, it nevertheless penetrates into the formation of culture, legitimating an unequal distribution of resources, status and power within a biased social and architectural environment.
Disability is a broad term within which cluster ideological categories as varied as sick, deformed, abnormal, crazy, ugly, old, feebleminded, maimed, afflicted, mad or debilitated--all of which disadvantage people by devaluing bodies that do not conform to cultural standards. Thus the disability system functions to preserve and validate such privileged designations as beautiful, healthy, normal, fit, competent, intelligent--all of which provide cultural capital to those who can claim such status, who can reside within these subject positions. It is, then, the various interactions between bodies and world that materialize disability from the stuff of human variation and precariousness.
This text is excerpted from Garland-Thomson's introductory essay to "Disability Studies in the University," the latest in The Academic Exchange's "Across Academe" series, which Garland-Thomson edited.