Definitions of Disability

Currently, disability scholars utilize several social or sociopolitical models of impairment and disability. Seeing disability as a constructed category rather than a concrete absolute demands conceptual clarification. We want to briefly give you our working definitions of the terms we use. These are fluid pragmatic research definitions that are also orientated toward satisfying our epistemological cravings for understanding. Individuals are impaired if they experience (or are perceived by others to experience) physiological or behavioral statuses or processes which are socially identified as problems, illnesses, conditions, disorders, syndromes, or other similarly negatively valued differences, distinctions, or characteristics which might have an ethnomedical diagnostic category or label. Societies may or may not perceive impairments as resulting in functional limitations. These functional limitations may or may not be disabling dependent on culture and situational criteria including stigma and power. Disability exists when people experience discrimination on the basis of perceived functional limitations. A disability may or may not be a handicap, or handicapping, dependent on management of societal discrimination and internalized oppression, particularly infantilization and paternalism, and on cultural and situational views of cause and cure and of fate and fault.

The Anthropological Concept of Culture

Many aspects of current scholarship including cultural studies and a critical movement within anthropology itself cause us to question anthropology's hold on the concept of culture. We need to talk about shifting definitions of culture because disability studies uses the word, and in a not unambiguous way. In European society the original largely agricultural usage of culture (from the Latin colo), as in to culture (Jackson, 1996), underwent some significant changes in meaning by the eighteenth and through the nineteenth centuries. Culture came to denote intellectual, aesthetic, and artistic refinement and products in art, music, poetry, and architecture and legitimated a hierarchy of social distinctions. Anthropology slowly divested the concept of culture of its explicit elitist reference and culture became a more generalized attribute of human groups. Thompson (1990) presents the two most common anthropological orientations to the concept of culture. In the descriptive conception, "the culture of a group or society is the array of beliefs, customs, ideas and values, as well as the material artifacts, objects and instruments, which are acquired by individuals as members of the group or society (1990, p. 129). In the symbolic conception, "culture is the pattern of meanings embodied in symbolic forms, including actions, utterances and meaning of objects of various kinds, by virtue of which individuals communicate with one another and share their experiences, conceptions and beliefs" (p. 132).

Since the early 1980s, a critical understanding of culture has become increasingly wedded to the above symbolic focus in anthropology and the social sciences more generally with power and domination reproduced in actors' everyday practices (see especially: Ortner, 1984; Dirks, Eley & Ortner, 1994; Giddens, 1979, 1984; Bourdieu, 1977, 1990). In this conception, culture is viewed as inhibiting and restrictive rather than simply enabling (Ortner, 1984; also see Dirks, Eley & Ortner, 1994). Current critical conceptions of culture assert that particular views of and positions within a culture are perspectival, partial, embedded in relations of power, and exist in conflict with other views. This is an understanding of "culture as multiple discourses, occasionally coming together in large systematic configuration, but more often coexisting within dynamic fields of interaction and conflict" (Dirks, Eley & Ortner, 1994, p. 4)

Critical understanding of culture in anthropology even extends to questioning anthropological use of the concept itself (see for example Abu-Lughod, 1991). According to this view, culture with its implication of holism, coherence, discreetness and timelessness, freezes differences and the imbalance of power in the ethnographer-informant relationship. In related ways, Farmer (in Scheper-Hughes, 1995, p. 417) criticizes the culture concept for obscuring the human relations that produce suffering. Jackson (1996) further critiques use of the term for its exclusion of the somatic, sensory, and biological from anthropological discourse in favor of the linguistic and conceptual. Despite the cogency of these and other criticisms, culture has yet to be displaced as anthropology's central notion, albeit use of the concept is increasingly couched in terms of this critical discourse.

Current, "identity" politics conceptions of culture (the most common approach to disability culture by non-anthropologists) often seem to harken back to an elitist, separatist past. When culture is discussed in relation to the disability rights movement, the notion of culture as "high" "C"ulture, as art and letters, as something to guard, promote, and develop emerges as primary. How veiled are most people's understanding of the breadth of culture as only Culture and art? How many people think of culture as quantifiable, as something an individual can lack? How far has anthropology's use of, discourse on, and critique of culture penetrated popular discourse?

Furthermore, use of the anthropological term "subculture" is disappearing in popular discourse. It is accused of being pejorative, of inferring a moral or value judgment, or a structural political hierarchy. Anthropology has been unable to communicate the viability of a fluid concept of subcultures in plural society and many retreat to the less problematic "community." The outcome has been to drop the "sub." This results in the lack of any useful terms to articulate differences and similarities within and between mixed and changing cultures in contact with each other. A modification of the concept of culture as less coherent, uniform, and bounded that recognizes internal variation may be necessary or its relevance to the complexity of plural societies may be lost. The solution? For now, many disability scholars and activists hedge the issue and speak of the disability community.

The American Anthropological Association and Disability Research

Anthropology's genuine fascination with otherness and the thickness of the ethnographic stance should be a boon to international disability studies. However, this promise is late in coming (Linton, 1998). There was a burst of interest in disability in the mid 1980s when Louise Duval (1986-8) published a newsletter named Disability and Culture (see Goldin, 1988). Many of the contributors were medical anthropologists who never made a transition to disability studies or from chronic illness to disability. Others are not anthropologists. However, in the early 1980s Duval's work founded the Disability Research Interest Group of the Society for Medical Anthropology, which she chaired for several years. From the late 1980s through the 1990s, with assistance from Carol Goldin, Devva Kasnitz has chaired this group and seen it gradually increase in significance. The group sponsors scientific sessions on disability at the annual meetings of the American Anthropological Association (AAA), operates a listserv (http://groups.yahoo.com/group/AnthropologyDisability Research), works with the Association on issues of physical, programmatic, and career access within the Association and the profession, and comprised a four year AAA President's Commission on Disability chaired by Gerry Gold.

Anthropological Study of Disability and Engagement with Disability Studies

Several authors have compiled bibliographies on disability and anthropology (Kasnitz and Shuttleworth, 1999; Vreede, 1998; Armstrong and Fitzgerald, 1996). Despite this activity, and although other disciplines have considered disability and cultural diversity (Kuehn, 1998), anthropological attempts to look at disability in other cultures are surprisingly clumsy and often read like an afterthought. We have three cautions to relate. Too much anthropological work on disability 1) fails to define its descriptive terminology, 2) overly focuses on the exotic, fate and fault, cause and cure, and/or 3) takes an opportunistic view of past casual field observations of "disability."

Disability only exists in reference to ability, but not necessarily a Western biomedical sense of ability. Taking a foreign field site census of people who would be considered disabled in the U.S. may tell us a lot about illness process, but nothing about disablement or even impairment. People are disabled if they are considered impaired and treated as disabled. There is no absolute. The cross-cultural range of acceptable variation in functional impairment related to disability is probably huge and completely unstudied. Knowing the cross-cultural statistics of the occurrence of a phenomena such as neurofibromatosis or multiple sclerosis or amputation is interesting and useful but should not be confused with a statistic on disability. To date, existing anthropological work on disability has followed three different approaches: 1) a focus on disability constructed from specific impairments, 2) cross-disability research, and 3) self-reflection of disabled anthropologists (for extended discussion of these three types, see Kasnitz and Shuttleworth, 1999; Shuttleworth, 2000).

Yet, compared to the plethora of work on illness and healing, medical anthropological research on disability has been minimal. Linton (1998) would argue that in part this is because there are so few anthropologists with disabilities. She is right. Secondly, Linton argues that disabled scholars are marginal to the academy. She is right again. Even when anthropologists win the Mary Switzer Fellowship, the most prestigious national disability research fellowship, as have Steven Kurzman and Drs. Lois Keck and Devva Kasnitz, anthropology fails to recognize the honor. Furthermore, anthropology appears to be parochial. Most anthropologists writing about disability, even when they are conversant with cross-disciplinary disability studies, do not quote scholars who are neither anthropologists nor French.

Anthropologists, both disabled and non-disabled, are under represented among disability studies scholars. Although some anthropologists choose to study disability, for the most part they remain aloof from a commitment to helping develop disability studies as a legitimate liberal arts field or concentration in its own right. This is both a loss for disability studies and a lost opportunity for anthropologists. Has anthropology's self-reflection also made it insular and contributed to its employment crisis?

Most disabled anthropologists who write about disability acquired their disability after they established a reputation in some other topical specialty (see Gold & Duval, 1994; Murphy, 1987). Anthropologists disabled prior to graduate school are deterred from studying disability because studying a group to which you belong may not provide an appropriate "culture shock experience." This was Devva's experience. Disabled anthropologists studying disability may also experience part of the phenomena of divided identity and allegiance that Abu-Lughod (1991) describes for feminist and "halfie" anthropologists. Finally, although disabled anthropologists are now those most likely to study disability they are also those most likely to be marginal to academic jobs in a profession with such a lightly veiled connection to images of adventure. Indiana Jones in a wheelchair?

We must here take note of a significant barrier to anthropological engagement with disability studies, that is, medical anthropology's "clinical" and "critical" distinction. The demedicalization of disability studies has eschewed a clinical approach to disability, and almost ignored clinical settings entirely. Among hard line disability studies scholars, even a critical approach to the ethnographic study of clinical settings, while not deemed inappropriate, is suspect and therefore rare. Scholars and activists have realized that this reaction to stigma and loss of control at the hands of the medical model is understandable, but removes them from health care policy debates such as the current ferment around managed care (Litvak, 1998; Tanenbaum & Hurley, 1995; Hanson, 1998). We note a cautious remedicalization of disability among scholars and advocates. The biological and the power of the medical system over our lives cannot be denied (Kasnitz, under review). However, clinical medical anthropologists are not likely to encounter progressive disability studies scholars without specifically looking for them outside their usual reference groups.

In order to understand what is so compelling about the perspective of disability studies that we are moved to mandate that anthropologists should engage in this discourse, one must take a step back and look at the historical medicalization and demedicalization of disability, at the demography of disability, and at the disability civil rights movement, the Independent Living Movement and the independent living paradigm. Looking at history we know that there are no precedents for the numbers and variety of people with severe disabling impairments surviving into old age. The types of impairments and their underlying causes are also rapidly changing. The "emerging universe of disability" includes many newly socially constructed disabilities resulting from population, demographic, attitudinal, and labeling shifts (Seelman & Sweeney, 1995).

Anthropologists should also take note of the development of research methodology within disability studies. The National Institute for Disability and Rehabilitation Research, the nation's foremost source of funding for disability research and training, has encouraged a Participatory Action Research (PAR) approach to research (Doe & Whyte, 1995; Kasnitz, Bruckner & Doe, 1996; Whyte, 1991; Litvak et al., 1995; Szymanski, 1995). This approach, usually used in applied research, has its origins in market research and is similar to action anthropology or empowerment research, or other applied research approaches where all of the stakeholders in the outcome of the research, and particularly the subjects of the research, have a role in determining each phase of the research process.

A radicalization of PAR, emancipatory research, has been proposed especially in British disability studies circles. Emancipatory research proposes to go beyond the tenets of PAR in reversing the social relations of research production, putting researchers both non-disabled and disabled at the disposal of disabled people and their interests (Oliver, 1990, 1992, 1996, 1998; Barnes, 1992; Stone and Priestly, 1996). (For some anthropological reflections on participatory approaches in disability studies see Shuttleworth, 1999, 2000, and Davis, 2000.) The general tenets of Participatory Action Research have been accepted as a concept and/or a term for a collaborative approach in the United States, Canada, and the United Kingdom.

Discussion

We two editors bring different focuses to bear on the project of engaging anthropology in disability studies. Russell grounds his interpretations in disabled people's felt sense of their lived experience and the symbolic associations they make in their daily, interpersonal life, which are engaged and shaped but not determined by larger social and cultural forces. Disabled people's experiences in their everyday encounters with others, the symbolic meanings that both parties bring to these encounters and the sociocultural contexts that informs these encounters and meanings are important to detail so that policies can be developed that speak to these day to day realities. Russell's approach harbors an implicit and sometimes explicit critique of the orientational, attitudinal and dispositional impediments that exist in U.S. society for people with disabilities and which must be more adequately elucidated for significant sociocultural change to occur.

Devva's focus is to develop an indigenous field of disability studies and disability policy studies (Litvak, 1993) to create a flow of disabled scholars and professionals who will increase our capacity for research and teaching and who can accomplish the goals she shares with Russell. Trained early as a cultural geographer in ecology and a systems approach, Devva is always looking for grounding and connectedness and is not thrown by ambiguity. Devva passionately believes that the ethnographic stance is suited to play a role in policy development and social change.

Policy change, she says, demands that policymakers have two things. First, a true understanding of what it is like to be the person who the policy will impact. Second, policymakers need numbers. How many of which people are involved? How much will it cost? Ethnography addressee this first need and provides context in which to understand how to obtain and interpret the numbers. For example, Gerry Gold's (1996, forthcoming) most recent work, an ethnography of physical access, will impact both theory and practice.

A Mutual Engagement of Anthropology and Disability Studies

Given our respective biases, what would we like to see emerge from anthropology's engagement with disability studies, and in fact a mutual engagement between the two disciplines? Both can benefit methodologically and theoretically. An anthropology focused on what is at stake for all stakeholders in local contexts and committed to an ethics of social justice (Kleinman & Kleinman, 1991; Scheper-Hughes, 1995) can learn from and contribute to a disability studies perspective that includes social and public policy change as major goals. In this way, anthropology can shed some of its long-standing decorative image and prove its utility for the people it studies and studies with (Kasnitz, 1986, 1995, 2001). For example, applied anthropology needs to look closely at disability studies' development of a PAR approach. (Doe & Whyte, 1995; Kasnitz, 1991; Whyte, 1991; Litvak et al., 1995; Szymanski, 1995).

General goals for this engagement and collaboration should be threefold: 1) to further the understanding of the lives of disabled persons cross-culturally; 2) to improve the quality of life for disabled persons; and 3) to promote a mutual engagement and collaboration in research and curriculum development by anthropologists and other scholars looking at disability.

We see a number of specific objectives that will assist in achieving these general goals: 1) engaging the ethnographic stance, 2) promoting a range of participatory action research and applied anthropological approaches, 3) promoting a research focus on the life course, context, and understudied variables, 4) promoting diverse theoretical perspectives, 5) promoting ongoing discussions of terminology and the conceptualization and representation of disability and impairment, 6) engaging anthropology in the academic development of disability studies, and 7) impacting public policy (for extended discussion of these goals and objectives, see Kasnitz and Shuttleworth, 1999, 2001, in preparation). This list is not necessarily exhaustive. We hope other disability and anthropological scholars will add relevant objectives.

Coda: The Concept of Culture

Whether the concept of culture will retain any heuristic or analytical power remains to be seen. As noted, some anthropologists have become much more critical of the self/other assumptions and asymmetrical power relations that they see as underlying the notion's use. We wonder whether culture can ever rebound from the punch of these recent attacks. Although there are many anthropologists who continue to use the concept uncritically, the movement of others to the opposite pole, against culture, is increasing. Paradoxically, in disability studies, the notion of culture is embraced for reasons not necessarily tied to research interests. As an identity marker, it surely retains vestiges of its elitist, distinction-making past, but also incorporates an anthropological sense of coherence and boundedness. Yet this version of the concept, referring as it does to a coherent aesthetic and artistic vision, is inherently also a claim for group and individual meaningfulness. Claiming culture in this sense is thus a celebration of distinctiveness. Indeed, when disability artists, musicians, and performers plan a week of disability culture events on campus, this is too a legitimate use of the term. Is celebrating "Disability Culture" any less legitimate than say celebrating Chicano culture? No! Is it the same? No!

Engaging Anthropology in Disability Studies: Contributions

When the World Institute on Disability published our co-authored article, Engaging Anthropology in Disability Studies, as its first in a series of position papers in Disability Studies, in a limited run (Kasnitz & Shuttleworth, 1999), we were not prepared for the enthusiastic response that would greet its appearance. We responded to over 175 requests for this paper, which we have generally sent out as email attachments. This reveals to us the general demand for interdisciplinary perspectives in disability studies, and in terms of our own expertise, a dialogue between anthropology and disability studies. We believe that the time is indeed ripe for anthropological engagement with disability studies, as several recent works attest (Kasnitz and Shuttleworth, 2001; Shuttleworth, 1999, 2000, 2001; Davis, 2000, Davis & Corker, 2000; Corker & Davis, in preparation; Peters, 2000). Our call for papers read as follows:

Papers should show a knowledge of both anthropology and disability studies and attempt in some way to engage the two fields/disciplines in dialogue. This can be through the description and theorization of a piece of research. A purely theoretical piece. A focus on ethical dilemmas, methods or reflexive approaches. Or any combination of the above.

This call for papers elicited a range of anthropology and anthropologically influenced works, some engaging the disability studies literature more seriously than others. We have encouraged some of the latter authors to more fully engage this literature, but final versions vary in how much they did so. There were also several good papers that we did not include because they neither engaged what we consider to be the current, growing interdisciplinary disability studies literature at all nor did they address the consumer disability movement.

This is tricky. Anthropologists working on disability related issues deserve encouragement. However, too many of them only reference literature about a single impairment or a single domain, medical care, education, etc., or do so from only the perspectives of allies, care givers, or family. We should also mention that we do not necessarily agree with all of the arguments in the following pages and that several require, from our perspective, further empirical support and/or theoretical explication. Yet, in the spirit of generating discussion in the disability studies community, we include them among the final papers.

Paper Commentaries

Native Americans and Disability

Rob Schacht's article "Engaging Anthropology in Disability Studies: American Indian Issues" is unique in this volume. Bob saw our call for papers and wrote this paper specifically for this volume. Bob is an anthropologist at Northern Arizona University where he is a part of a US federally funded Research and Training Center on American Indians (their nomenclature) and disability. Although not himself a Native American, Bob knows all the people working in the field and gives an expert's summary and guide to the state of the art of the literature.

Lilah Morton Pengra, an anthropologist, collaborates with Joyzelle Gingway Godfrey, a Dakota scholar, in "Different Boundaries, Different Barriers: Disability Studies and Lakota Culture." Quoting from their abstract:

The authors have chosen to show how anthropology can be engaged in disability studies by demonstrating its use in a study of Lakota (Sioux) constructs of impairment, disability, and handicap. The description is based on a questionnaire, open-ended interviews at several locations in South Dakota, and the personal knowledge of the authors.... Two models are employed to facilitate the contrast between Lakota and Euro-centric cultures: the concept of personhood and the bipolar typology of cultures as either collectivist or individualist. Values in Lakota culture that support collectivism are related to the kind of barriers faced by Lakotas.

Like Schacht, Pengra and Godfrey work within the disability studies and disability activists' world. They know what little existing literature and theory effects a meaningful crossover between anthropology, disability studies, and the disability movement. This is rare enough that Devva Kasnitz prepared a review of Pengra's book, Your Values, My Values: Multicultural Services in Developmental Disabilities, which follows her paper.

Focusing the Anthropological Gaze: From Disability Movements to the Cultural Construction of Disability

One important contribution of disability studies is to record and analyze disability history from the inside out. The exposition of a cross-disability or cross-impairment movement is perhaps the most important aspect. Ed Eames and Toni Eames do just that in "Bridging Differences within the Disability Community: The Assistance Dog Movement." They do so using the anthropological concept of subculture. We believe that anthropology can contribute much to disability studies' understanding of plural societies. This is a small beginning.

Diane Pawlowski's, "Work of Staff with Disabilities in an Urban Medical Rehabilitation Hospital" contributes a much needed ethnographic perspective to the study of rehabilitation in disability studies. In the Body Shop, the common bond of impairment and disability links some staff members with their patients. For these staff, the lived experience of working with a disability often conflicts with rehabilitation's idealized goals of achievement, change and development. Disabled staff are at the same time held up as models for patient achievement, yet especially lower level staff are negatively sanctioned when their impairment or chronic illness affects their time on the job. Diane suggests that the marginalization of lower level staff with disabilities is something that needs to be explored further and that the untapped expertise of staff with disabilities should be taken seriously by residential rehabilitation programs.

Bioethics, a relatively new field of study itself, has an uneasy relationship to emerging disability studies. Clinical bioethicists are assumed, in some way, to represent the "patient" or at least the space between the patient and medicine. Several noted disability studies scholars are treading these spaces. Anita Silvers, Adrienne Asch, and Tom Shakespeare, are just a few names. Joseph Kaufert is the best known anthropologist in this group who has a longstanding engagement with both the Independent Living Movement and with disability studies. His article "The Cultural Context of Ethicists' Case Examples and Consumer Narratives Decisions about Life Supporting Technology" adds the dimension of the anthropological gaze. How can it help bridge gaps between the ethicists' and the consumers' construction of lives and decision-making. Debates about the political reality of physician assisted suicide have made bridging this gap a matter of life or death.

Nili Kaplan-Myrth's "Blindness Prevention in Mali: Are Improvements in Sight?" is an incisive argument against universal application of the disability prevention model in cross-cultural public health efforts to eradicate blindness. In Mali, where she conducted ethnographic research, these efforts have been an abysmal failure. Kaplan-Myrth maintains that one significant reason is that blindness is not considered a disability by Malians, despite their negative feelings about losing sight. As she puts it blindness is just one of the many "disabling conditions of everyday life." In actuality, all Malians suffer from multiple disabilities which the disability prevention model cannot adequately contend with. Kaplan-Myrth concludes that these disabling conditions of everyday life, which are caused by structural inequalities perpetuating ill health, should be the proper target of public health efforts.

From Experience to Theory in Anthropology's Engagement

In "Exploring Multiple Roles and Allegiances in Ethnographic Process in Disability Culture," Russell Shuttleworth continues his reflexive interrogation of his recent ethnographic fieldwork (see Shuttleworth, 1999, 2000). For the present effort, he critically reflects on the tensions and dilemmas borne of multiple roles and allegiances - those of anthropology, disability studies, and as ethnographer and employee and friend of his key informant - that played out while conducting research on the search for sexual intimacy for men with cerebral palsy in the San Francisco Bay Area. Shuttleworth shows how a critical, reflexive exploration of these multiple roles and allegiances can challenge the assumptions of both anthropology and disability studies and actually led him to an enhanced theoretical understanding of some of his research issues.

Sumi Colligan's "The Ethnographer's Body as Text and Context: Revisiting and Revisioning the Body through Anthropology and Disability Studies" is a multi-layered reflexive account of the complex relationship she had with her informants while conducting the ethnographic fieldwork for her dissertation. How her disability status figured in this relationship has only become clear after years of reflection since completion of that research. Early in the paper, she maintains that "anomaly is not simply a problem of classification but an embodied status that must be worked out in everyday social situations." The fact that her informants are Karaite Jews who also experience a stigmatized identity in Israel, resonates in some sense with Colligan's own experience of stigma. The handling of her body during personal assistance routines became the occasion and her body became "the text for the inscription of Karaite cultural meanings and opposition to a disembodying Israeli public discourse." This "relationship was both empowering and disempowering for both parties, but forever one in which our bodies together generated alterations in received scripts about the impurity of Karaite bodies and the incompetence and undesirability of disabled ones." Reflexively excavating multiple meanings from how her body is handled by Karaite families, Colligan finally relates these embodied ethnographic insights to the limitations and possibilities of anthropological and disability studies approaches.

William Peace uses his ethnographic fieldwork in a tattoo parlor as a disabled person to reflect on his stigmatized disability identity and compares it to the stigma evoked by some forms of body modification in our society. He maintains that, "The presence of disabled and tattooed people violate social norms and call into question basic cultural mores in Western society." In "The Artful Stigma," Peace's reflections move from exploring transgressive similarities to a call for an engaged, morally committed and passionate anthropology of disability (also see Peace, 1997; Kasnitz and Shuttleworth, 1999, 2001; Shuttleworth, 1999, 2000).

Jeffrey Willett and Mary Jo Deegan's "Liminality and Disability: Rites of Passage and Community in Hypermodern Society" presents an explication of the concept of liminality applied to the plight of disabled people in hypermodernity. While we are critical of Murphy et al.'s (1988) use of liminality in research on disability (see Kasnitz and Shuttleworth, 1999; Shuttleworth, 2000), especially for marginalizing the lived experience of people with early on-set impairments and for what we see as focusing on social process at the expense of cultural categorization, Willet and Deegan's very thorough treatment, drawing extensively from the range of Turner's work, ups the conceptual ante, so to speak, and presents a sophisticated argument for the continued use of this concept in anthropological approaches to disability.

Our final paper, "Journeying through Life Without a Map: Dyslexia, Dysgraphia, Dysnumia and Other Such" by Dana Raphael, Mike Salovesh, and Martha Laclave, is an intensely personal one. As we write this, Devva recounts the day Mike proudly announced his new disabled identity. Given the current importance of self-reflection and reflexivity in anthropology, it is fitting we close with this piece which asks a critical question, if we fail to recognize disability and disability oppression in ourselves, what else have we missed?

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