Claiming Disability

Knowledge and Identity

Simi Linton

• Publisher: NYU Press
• Year: 1998
• ISBN:
  9780814752746
• Topic: Scienze sociali
• Subtopic: Disabilità in sociologia

From public transportation and education to adequate access to buildings, the social impact of disability has been felt everywhere since the passage of the Americans with Disabilities Act in 1990. And a remarkable groundswell of activism and critical literature has followed in this wake.

Claiming Disability is the first comprehensive examination of Disability Studies as a field of inquiry. Disability Studies is not simply about the variations that exist in human behavior, appearance, functioning, sensory acuity, and cognitive processing but the meaning we make of those variations. With vivid imagery and numerous examples, Simi Linton explores the divisions society creates—the normal versus the pathological, the competent citizen versus the ward of the state.

Map and manifesto, Claiming Disability overturns medicalized versions of disability and establishes disabled people and their allies as the rightful claimants to this territory.

1
RECLAMATION

The curriculum is a manifest expression of the cultural values just as laws are manifest expressions of what a society deems to be right or wrong behavior.                                                                   Kliebard 1992, 199

Our educational institutions … are, not alone but preeminently, the shapers and guardians of cultural memory and hence of cultural meanings.                                                                   Minnich 1990, 12

It was, at one time, seamless. There were no disjunctures between the dominant cultural narrative of disability and the academic narrative. They supported and defended each other. But in the past twenty years, as the flaws in the civic response to disability have been exposed, as changing social structures and legislative victories reassemble that narrative, the academic tale slips further behind. It neither reflects the change that has occurred nor offers the space or the means to think in more progressive ways about disability.

Enter disability studies: a location and a means to think critically about disability, a juncture that can serve both academic discourse and social change. Disability studies provides the means to hold academics accountable for the veracity and the social consequences of their work, just as activism has served to hold the community, the education system, and the legislature accountable for disabled people’s compromised social position.

This book examines disability studies as a field of inquiry, its historical roots, present configuration, and explanatory value. Disability studies takes for its subject matter not simply the variations that exist in human behavior, appearance, functioning, sensory acuity, and cognitive processing but, more crucially, the meaning we make of those variations. The field explores the critical divisions our society makes in creating the normal versus the pathological, the insider versus the outsider, or the competent citizen versus the ward of the state. It is an interdisciplinary field based on a sociopolitical analysis of disability and informed both by the knowledge base and methodologies used in the traditional liberal arts, and by conceptualizations and approaches developed in areas of the new scholarship. Disability studies has emerged as a logical base for examination of the construction and function of “disability.” These scholarly explorations and the initiatives undertaken by the disability rights movement have resulted in new paradigms used to understand disability as a social, political, and cultural phenomenon.

Disability studies has arisen in the past twenty years to focus an organized critique on the constricted, inadequate, and inaccurate conceptualizations of disability that have dominated academic inquiry. Above all, the critique includes a challenge to the notion that disability is primarily a medical category. Consequently, disability studies contests the current academic division of labor in which the study of the phenomenon rests in the specialized applied fields (rehabilitation, special education, health, and so on) and the rest of the academy is largely exempt from meaningful inquiry into the subject of disability. By refusing the medicalization of disability and by reframing disability as a designation having primarily social and political significance, disability studies points to the inadequacy of the entire curriculum with respect to the study of disability. The fault lines that have been exposed stretch from one end of the curriculum to the other: from cultural studies to American studies, from women’s studies to African American studies, from biology to literary criticism, from history to psychology, and from special education to philosophy.

Despite the steady growth of scholarship and courses, particularly in the past five years, the field of disability studies is even more marginal in the academic culture than disabled people are in the civic culture. The enormous energy society expends keeping people with disabilities sequestered and in subordinate positions is matched by the academy’s effort to justify that isolation and oppression.

Disabled people, and I will immediately identify myself as one, are a group only recently entering everyday civic life. A host of factors have typically screened us from public view. We have been hidden—whether in the institutions that have confined us, the attics and basements that sheltered our family’s shame, the “special” schools and classrooms designed to solve the problems we are thought to represent, or riding in segregated transportation, those “invalid” coaches, that shuttle disabled people from one of these venues to another. The public has gotten so used to these screens that as we are now emerging, upping the ante on the demands for a truly inclusive society, we disrupt the social order. We further confound expectations when we have the temerity to emerge as forthright and resourceful people, nothing like the self-loathing, docile, bitter, or insentient fictional versions of ourselves the public is more used to.

We have come out not with brown woollen lap robes over our withered legs or dark glasses over our pale eyes but in shorts and sandals, in overalls and business suits, dressed for play and work— straightforward, unmasked, and unapologetic.¹ We are, as Crosby, Stills, and Nash told their Woodstock audience, letting our “freak flag fly.” And we are not only the high-toned wheelchair athletes seen in recent television ads but the gangly, pudgy, lumpy, and bumpy of us, declaring that shame will no longer structure our wardrobe or our discourse. We are everywhere these days, wheeling and loping down the street, tapping our canes, sucking on our breathing tubes, following our guide dogs, puffing and sipping on the mouth sticks that propel our motorized chairs. We may drool, hear voices, speak in staccato syllables, wear catheters to collect our urine, or live with a compromised immune system. We are all bound together, not by this list of our collective symptoms but by the social and political circumstances that have forged us as a group. We have found one another and found a voice to express not despair at our fate but outrage at our social positioning. Our symptoms, though sometimes painful, scary, unpleasant, or difficult to manage, are nevertheless part of the dailiness of life. They exist and have existed in all communities throughout time. What we rail against are the strategies used to deprive us of rights, opportunity, and the pursuit of pleasure.

It is our closeted selves that have been naturalized within the academic curriculum. Even a cursory review of the curriculum reveals only patronizing and distorted representations of disability, and these are left largely unexamined and unchallenged. But minor housecleaning will not rid out the deeper structural elements, the scholarly conventions, and theoretical underpinnings within which those representations are deemed valid and useful. A closer look reveals problems in both the structure and content of the curriculum, predicated on a narrowly conceived interpretation of disability.

The field of disability studies is now at a critical juncture; scholars and activists have demonstrated that disability is socially constructed to serve certain ends, but now it behooves us to demonstrate how knowledge about disability is socially produced to uphold existing practices. I attempt to capture this critical moment here in a stop-action photo that reveals that terrain. Yet this is also a strategic endeavor not only to mark the moment and the territory but also to stake out the contested borders where the resistance to the ideas is strongest.

Having appointed myself as navigator, I should comment on my identity as a disabled woman. The particulars of my condition are not of concern. They may impinge on specific pieces of the puzzle I am trying to assemble here, and I will discuss them in that context, but they are of little consequence to this overview. Disabled people, across the broadest spectrum of disability, have solidified as a group. Although this group identity has certainly not been comfortably embraced by all disabled people, a strong disability alliance has led to civil rights victories and the foundation of a clearly identified disabled community. The cultural narrative² of this community incorporates a fair share of adversity and struggle, but it is also, and significantly, an account of a world negotiated from the vantage point of the atypical. Although the dominant culture describes that atypical experience as deficit and loss, the disabled community’s narrative recounts it in more complex ways. The cultural stuff of the community is the creative response to atypical experience, the adaptive maneuvers through a world configured for nondisabled people. The material that binds us is the art of finding one another, of identifying and naming disability in a world reluctant to discuss it, and of unearthing historically and culturally significant material that relates to our experience.

In the absence of the specifics of my condition, and my life, you may find yourself conjuring up some of the readily available images of disabled women, both fictional and real: the beholden Blind Girl in Chaplin’s City Lights; the shame-riven Laura Wingfield in The Glass Menagerie; the doleful poster child gazing up at you from the collection box on the supermarket checkout counter; the defiant disability rights activist arrested for civil disobedience; your neighbor down the hall—or you may see yourself. We all share a cultural space. I don’t claim to speak to every person’s experience, only to paint myself within this frame. My experience as a disabled subject and my alliance with the community are a source of identity, motivation, and information.

I am also, by discipline, a psychologist, but this essay is informed more directly by women’s studies, queer studies, cultural studies, the field of disciplinarity, and, of course, disability studies than by my training. In fact, some basic tenets of psychology run counter to core ideas in disability studies in at least three fundamental ways. First, psychology is responsible for the formulations and research conventions that cement the ideas of “normal,” “deviant,” “abnormal,” and “pathology” in place. The fact that disability is inextricably linked to pathology is problematic, but even more fundamental is psychology’s endorsement of the idea of “normalcy,” which centers and privileges certain types of behavior, functioning, and appearance. Second, psychology’s emphasis on empiricism and its repudiation of standpoint theory or positionality as legitimate starting points for research work against the types of qualitative, interpretive, historical analyses necessary to explicate the social construction of disability, the meanings assigned to disability, and the policies and practices that oppress disabled people. Oliver discusses this issue in a somewhat different way when he notes that the “social relations of research production . . . are built upon a firm distinction between the researcher and the researched” (Oliver 1992, 102). Third, although there are exceptions, psychology primarily trains practitioners to intervene on the personal level rather than intervene to alter the environment. Psychology in general has traditionally focused attention on “the personal qualities of those defined as having or being the problem,” and, as a result, the policy derived from that research addresses “person-fixing rather than context-changing” (Trickett, Watts, and Birman 1994, 18). Disability studies, in contrast, focuses on the external variables: the social, political, and intellectual contingencies that shape meaning and behavior.

The questions that psychology and other traditional disciplines ask, and the methods and practices found in those disciplines are insufficient for addressing the problems that disability studies sets out to solve. These limitations aside, I must add that I have found my clinical training useful not in fostering disability studies but in analyzing the strength of the resistance I’ve witnessed over the years to disability studies and to disabled people’s perspective.

I hope in this book on disability to bring into stark relief, to foreground, the mechanisms by which disability is covered over, layered with meaning and rendered invisible. This book is an effort to turn those processes inside out and reveal them to be not inevitable reactions to human conditions labeled disabilities but devices used to sort human beings according to the social and economic needs of a society. The disability rights movement has paved the way for an investigation of this sort. By calling attention to the patterns of discrimination, by creating unity across previously divided constituencies, and by forging a potent and effective civil rights and social justice movement, it has challenged the academic community to reckon with its own role in this process. The scholarship and curriculum practices housed in academic institutions play a significant role in the perpetuation of a divided and unequal society. The academy has only just begun to examine how its paltry and lopsided vision of disability compromises the knowledge base. Therefore, this book examines the consequences of these constricted views on disabled people’s lives and on the knowledge that we impart to students. It uses as its main text the academic culture that constructs that knowledge and participates in the construction of those lives.

NOTES

1. The unapologetic stance is given its full recognition in the aptly named book No Apologies: Making It with a Disability (Weiner 1986).

2. For further information on ideas on disability as culture see Steve Brown’s monograph Investigating a Culture of Disability (1994). It is available from the Institute on Disability Culture, 2260 Sunrise Point Road, Las Cruces, New Mexico 88011.

2
REASSIGNING MEANING

The present examination of disability has no need for the medical language of symptoms and diagnostic categories. Disability studies looks to different kinds of signifiers and the identification of different kinds of syndromes for its material. The elements of interest here are the linguistic conventions that structure the meanings assigned to disability and the patterns of response to disability that emanate from, or are attendant upon, those meanings.

The medical meaning-making was negotiated among interested parties who packaged their version of disability in ways that increased the ideas’ potency and marketability. The disability community has attempted to wrest control of the language from the previous owners, and reassign meaning to the terminology used to describe disability and disabled people. This new language conveys different meanings, and, significantly, the shifts serve as metacommunications about the social, political, intellectual, and ideological transformations that have taken place over the past two decades.

NAMING OPPRESSION

It has been particularly important to bring to light language that reinforces the dominant culture’s views of disability. A useful step in that process has been the construction of the terms ableist and ableism, which can be used to organize ideas about the centering and domination of the nondisabled experience and point of view. Ableism has recently landed in the Reader’s Digest Oxford Wordfinder (Tulloch 1993), where it is defined as “discrimination in favor of the able-bodied.” I would add, extrapolating from the definitions of racism and sexism, that ableism also includes the idea that a person’s abilities or characteristics are determined by disability or that people with disabilities as a group are inferior to nondisabled people. Although there is probably greater consensus among the general public on what could be labeled racist or sexist language than there is on what might be considered ableist, that may be because the nature of the oppression of disabled people is not yet as widely understood.

NAMING THE GROUP

Across the world and throughout history various terminologies and meanings are ascribed to the types of human variations known in contemporary Westernized countries as disabilities. Over the past century the term disabled and others, such as handicapped and the less inclusive term crippled, have emerged as collective nouns that convey the idea that there is something that links this disparate group of people. The terms have been used to arrange people in ways that are socially and economically convenient to the society.

There are various consequences of the chosen terminology and variation in the degree of control that the named group has over the labeling process. The terms disability and disabled people are the most commonly used by disability rights activists, and recently policy makers and health care professionals have begun to use these terms more consistently. Although there is some agreement on terminology, there are disagreements about what it is that unites disabled people and whether disabled people should have control over the naming of their experience.

The term disability, as it has been used in general parlance, appears to signify something material and concrete, a physical or psychological condition considered to have predominantly medical significance. Yet it is an arbitrary designation, used erratically both by professionals who lay claim to naming such phenomena and by confused citizens. A project of disability studies scholars and the disability rights movement has been to bring into sharp relief the processes by which disability has been imbued with the meaning(s) it has and to reassign a meaning that is consistent with a sociopolitical analysis of disability. Divesting it of its current meaning is no small feat. As typically used, the term disability is a linchpin in a complex web of social ideals, institutional structures, and government policies. As a result, many people have a vested interest in keeping a tenacious hold on the current meaning because it is consistent with the practices and policies that are central to their livelihood or their ideologies. People may not be driven as much by economic imperatives as by a personal investment in their own beliefs and practices, in metaphors they hold dear, or in their own professional roles. Further, underlying this tangled web of needs and beliefs, and central to the arguments presented in this book is an epistemological structure that both generates and reflects current interpretations.¹

A glance through a few dictionaries will reveal definitions of disability that include incapacity, a disadvantage, deficiency, especially a physical or mental impairment that restricts normal achievement; something that hinders or incapacitates, something that incapacitates or disqualifies. Legal definitions include legal incapacity or disqualification. Stedman’s Medical Dictionary (1976) identifies disability as a “medicolegal term signifying loss of function and earning power,” whereas disablement is a “medicolegal term signifying loss of function without loss of earning power” (400). These definitions are understood by the general public and by many in the academic community to be useful ones. Disability so defined is a medically derived term that assigns predominantly medical significance and meaning to certain types of human variation.

The decision to assign medical meanings to disability has had many and varied consequences for disabled people. One clear benefit has bee...