A Sociocultural Model of Impairment Disability© DEVVA KASNITZ AND RUSSELL SHUTTLEWORTH University of California, Berkeley December, 2003 Shuttleruss@msn.com * Devva@earthlink.net TO MAKE THINGS SIMPLER, I WILL READ EVERYTHING ON A SLIDE. THEN ADD COMMENTARY ON SOME OF THE POINTS ON THAT SLIDE BEFORE I MOVE ON TO THE NEXT SLIDE. WHEN WE GET INTO THE MODEL ITSELF, DEVVA WILL READ EVERYTHING ON A PARTICULAR SLIDE. DOES ANYONE NEED A VERBAL DESCRIPTION OF THE PICTURES THAT WILL BE ON HER SLIDES?

Goals of this Project to create a model of impairment-disability committed to the inherent value of human difference, and of equal access to social, cultural and material goods to create a model that enables us to recognize, map, and analyze disability oppression in diverse cultures to develop our model incorporating sociopolitical, cultural, ecological, and existential- phenomenological theories of impairment- disability to create a processual, temporal, spatial, and contextual model of impairment-disability --After slide: While we acknowledge social and cultural integration of disabled people, our model is meant as a critical, heuristic tool for use by ethnographers and others interested in the analysis of disability oppression. We have not yet integrated the individual/existential-phenomenological aspects into our model, although we will be talking about some of our phenomenological influences. In terms of the last point, we don’t think process, time, space and context have been well integrated into other disability models. One last point, since we are both medical anthropologists and disability studies scholars, our model incorporates ideas and methods from both disciplines.

Impairment Disability Why the hyphen? to problematize anthropologists’ prior use of these terms to highlight the processual nature of the relationship between these and other terms in our model to stress the need for analytical specificity within this process Well, not exactly a hyphen --After slide: Anthropologists have been very imprecise in their use of disability related terminology as we will discuss a little later. A hyphen between impairment and disability does not signify a dichotomy or duality, but a focus on process which has been notably absent from disability models and theories. So we use a two way arrow here to more accurately show what we mean. Despite our focus on process, however, we often need to analyze only one of its aspects.

Review and Critique of Models and Theories of Impairment-Disability

SOCIOPOLITICAL DISABILITY MODELS Independent Living Model (De Jong) states that current sociopolitical structures produce access barriers for and dependency in impaired people resulting in disability is based on a consumer driven movement that fosters autonomy, self-help and the removal of societal barriers and disincentives Minority Group Model (Hahn) describes how current sociopolitical structures produce access barriers for and discrimination against impaired people resulting in disability is motivated by a political and research strategy used to counter discrimination and advocate for civil rights British Social Model (Oliver) sees the historical convergence of industrialization and capitalism as restricting impaired people’s access to material and social goods, which results in their economic dependency and creates the category of disability is motivated by a political and research strategy used to combat socioeconomic oppression and to transform the material structures that marginalize and devalue the capabilities of impaired people Before: These are perhaps the most well-known sociopolitical models. We have selected those theorists whose work we think epitomizes these models. After: The Independent Living Model documented a paradigm shift from the medical model to the concept of independent living for disabled people. The Minority Group Model situated this paradigm shift in a civil rights frame. The British Social Model is a Marxist oriented model, and although described in more theoretical detail by scholars in the UK, it remains limited because of its focus on material and economic forces as structuring social and cultural domains. I think it is fair to say that all these models accept the tenet that it is society that disables impaired individuals. Final point: What we take from these models is their rejection of models that simply focus on the individual (the medical and moral- religious models) and their understanding that social processes and cultural meanings structure disabled peoples’ oppression and opportunities. What we reject is their dichotomy of impairment/disability and their narrow focus on simply disability oppression. As others such as H & P have argued, a natural impairment cannot be simply handed over to the medical model. Impairment also needs to be interrogated as a cultural construction. Transition to next slide: These then are the major disability models that have influenced our work.

Theories of Impairment Disability Postmodern Theory Scott-Hill (Corker) and Shakespeare see disability as constructed via discursive practices add a discursive theory of communication to the current materialistic focus on structure perceives disability identity as fluid and its boundaries dependent on context and the dynamic interaction of other self-identities emphasizes a dialogic relation between impairment and disability (not an analytical privileging of one over the other) --Before slide: As exemplified by Mairian Scott-Hill (aka. Corker) & Tom Shakespeare (but the list would also include Rosemary Garland Thomson, Ayesha Vernon, Tanya Titchkosky and others) Asides after individual bullets: 1) disability is created when we talk and write about it; 3) so it’s not all or nothing; 4) impairment and disability are equally important in analysis After slide--So disability and degree of disability is contextually dependent on the barriers to access. For those who are also oppressed along other social category lines (gender,sexuality, race), one or more identities can be foregrounded depending on context. For example, someone with an impairment may be barred from certain types of employment but may not be excluded from marriage and family life. We have especially taken note of Marian Scott-Hill’s critique of modernist models and theories, which privilege one term in a dichotomy (disability over impairment, society over individual) in their analyses. Scott-Hill’s aim is to focus analysis on both terms and also the space or process between both terms to help to reveal the issues and agency of marginalized disabled people who are overlooked by modernist approaches. Final point: What we’ve gained from postmodern approaches is a better understanding of the contextual nature of disability identity and oppression, a suspicion of binaries and a focus on process.

THEORIES OF DISABILITY …continued Phenomenological Theories Hughes and Paterson sees disability as the embodiment of negative cultural perceptions and attitudes perceive impairment as socioculturally constructed posit that the non-disabled structure of embodied contexts of meaning creates disabled people’s social dys-appearance advocate for a cultural-phenomenological restructuring of carnal contexts of meaning along more inclusive lines Shuttleworth posits that embodied sensitivities to certain social situations reveal disability oppression analyzes lived metaphors of embodiment (i.e blocked, trapped) as felt remembrances of past disability oppression/empowerment --After slide: For those not familiar with phenomenological research let me restate the major points here. Hughes and Paterson show the inadequacies of sociopolitical models that focus on material relations and social structures and that relegate a “natural” or non-constructed impairment to the authority of medicine. They see embodied contexts of meaning such as communicating and mobility as being structured by non-impaired bodies. Thus, disabled people’s bodies appear as a problem (dys) to themselves and non-disabled others because of this implicit structuring. Disabled people who use a wheelchair for example become hyper-aware of their difference from “walkies” because mobility is normatively structured in non-disabled terms of moving from one place to another bi-pedally. Hughes and Paterson argue for an expansion of these normative contexts of meanings to make them more inclusive of difference. Despite H & P great influence on us, we feel they do not adequately theorize agency and internalized oppression in their work. --My own work offers a corrective, I show how oppression is internalized through social repetition, becoming embodied as a sensitivity to particular interpersonal situations. For example, some of the men with c.p. who I interviewed on their sexual situation, over time came to expect that they would be be seen as asexual during interactions by non-disabled others and this expectation or sensitivity would become embodied as a felt barrier to their sexual agency. Oppression originating from without thus came to infect their ability to act in the world even when they were not being seen as asexual by others.

THEORIES OF DISABILITY …continued Ecological Contextual Community Based Theories Seekins perceives impairment as situational and contextually constructed sees disability as a response to environmental systems and pressures advocates for community development strategies to restructure disabling barriers to access and increased participation Kasnitz analyzes systemic and situational ethno-embodiment perceives impairment as one culturally constructed resolution to the tension of embodied anomaly posits that disability and handicap are unique systemic constructions of differential access throughout the life course and in valued cultural domains

Anthropology

ANTHROPOLOGICAL APPROACHES TO IMPAIRMENT DISABILITY Social Complexity Theory (Scheer and Gross) states that in modern complex societies visible impairments are commonly thought to classify individual identities in small scale societies visible impairments are less important in classifying individuals Stigma Theory (Goffman) sees impairments as representing one kind of undesired difference from social expectations that are discrediting (the stigmatization process) perceives disability as a sociocultural construction Liminality Theory (Turner, Murphy, et. al.) looks at ritual process that separates and then reintegrates individuals into the social fabric after a period of liminality (betwixt and between) sees disability as a social suspension, a liminal state frozen in time Anomaly Theory (Douglas) looks at phenomena that fall in between cultural categories and create cultural tension and dissonance is often used in conjunction with liminality theory to explain the marginality of disabled people --After slide: In social complexity theory, because the individual in small scale societies is related and connected to others in many social roles and contexts, a physical impairment does not come to define one’s entire social identity. There need to be more studies that particularly explore this point to make sure we are not participating in a romanticism of traditional societies. Many medical anthropologists have used the concept of stigma in their work. While acknowledging that there have been many critiques of stigma, especially from disability studies theorists, we feel that this concept still has utility. If one views stigmatization here as a power move of non-disabled over disabled people. One critique we have is that the stigmatization process needs to be further theorized in terms of embodiment and phenomenological theory. I feel my own work has begun this task. In contrast to stigma, we feel the concept of liminality is problematic. We feel it is not suitable to the study of non-ritual marginalization such as impairment-disability because it cannot incorporate the lived experience of people with early onset impairments who do not experience a prior phase before they become liminal. We feel that the concept of anomaly because it is not originally a phase in a ritual process makes it a much better baseline concept to construct a model of impairment-disability from. For Douglas anomaly is inherently negative, but in our model we see it as only potentially negative, sometimes its resolution occurs without a negative value loading.

ANTHROPOLOGICAL APPROACHES TO IMPAIRMENT DISABILITY Phenomenology (Frank) focuses on the disabled person’s body image concedes the “other” is “unknowable” Personhood (Ingstad and Whyte) focuses on what the constituent features of personhood (valued adult social statuses) are in a society asks, to what extent are disabled people accorded these features? Disablement Process (Luborsky) sees disability as a process primarily defined by a loss of personhood Semiotics (Stiker) focuses on the degree of and types of integration-exclusion of disabled people played out on several cultural levels: biological, social, medical, ethical, religious, etc. --After slide: Gelya Frank’s initial phenomenological work on impairment-disability focused only on the body image of one informant, a woman without limbs. Her recent book is an excellent reflexive account of her relationship with this same woman over 20 years. From our perspective we would like to have seen the existential dynamics of this woman’s empowerment fleshed out, although this is outside the theoretical parameters Frank sets for herself. We see the concept of personhood as having general utility in our project. The strength of this concept is that each society will have its own characteristics that define personhood, which the ethnographer must discover. While the concept of the disablement process is potentially applicable, the focus on “loss” and “erosion of personhood” by anthropologists who use it such as Luborsky, so far make it, like limality, problematic for analyzing the experience of people with different ages of impairment onset. Henri Stiker’s semiotic approach, while not without problems, in which he looks at the various signs and symbols within a society that determine the relative integration or exclusion of people with bodily or behavioral differences, we find useful. His work has stimulated a new anthropological focus on social exclusion: For example, Jane Hubert’s edited volume, Madness, Disability and Social Exclusion. While this work informs our model, we throw in some significant twists. We elevate the concept of access to describe a specific theory of inclusion/exclusion relevant to impairment-disability.

CRITIQUE OF ANTHROPOLOGICAL THEORY AND RESEARCH ON DISABILITY Research on impairment disability: is problematic because most studies have been conducted in North America often focuses on single impairments with no attempts at cross-impairment analysis within a society or between societies is only beginning to develop taxonomies of what are perceived to be impairments in different societies, and which impairments are disabling and why does not provide ethnographic description of the full range of human interactions occurring in valued and changing contexts/domains of everyday life often overlooks important understudied impairment-disability variables such as “hide-ability,” predictability, availability of accommodations, social acceptability of disabilities, etc. Before Slide: Given what we’ve said about anthro theory, what are some of the more general critiques of anthropologists work on impairment-disability

Research on impairment-disability: CRITIQUE OF ANTHROPOLOGICAL THEORY AND RESEARCH ON DISABILITY ….continued Research on impairment-disability: often over generalizes across the life-course from the perspective of one age group to others is terminologically imprecise is parochial and does not engage disability studies literature subscribes to a radical relativistic approach and minimally analyzes relations of power in general is undertheorized After slide: Given this critique, we acknowledge that our own work is in North America. But we are hoping to expand our geographic focus and send students abroad. We want to acknowledge the fine ethnographic work of Devlieger in Africa and Kohrman in China. For example, Kohrman describes an indigenous category of impairment that does not fully translate. “Que Zi” or “walking strangely” does not conform to a Western diagnosis. Similar work has been done in Cambodia by Steven Kurzman. We need more description and ethnographic observation of cultural domains such as work, family life, sexuality in the lives of disabled people from ALL ages of onset. For example, Murphy and Luborksy overgeneralize from mature onset to early onset impairments in their work. More recently, Rayna Rapp and Faye Ginsberg look at infants and children and overgeneralize from that experience. Anthropological research on other social categories such as gender/ethnicity/race/sexuality is increasingly analyzed in terms of power relations. While Rapp and Ginsberg do take this approach in their analysis of disability and citizenship, most ethnogaphers have a weak view of oppression. Finally, we continue to be appalled at the imprecise terminology used in anthropology. Disability often becomes the default term even when bodily/behavioral difference or impairment or another ethnophysiological or ethnopsychological term would be more precise. We feel that both the terminological morass and undertheorizing of impairment-disability will be resolved by more, and more complete ethnographies.And we just happen to have a model that we hope will encourage ethnographies of impairment-disability.

Sociocultural Model of Impairment Disability

Sociocultural Model of Impairment-Disability: The Perceptual-Conceptual Layers Posit Bio-Physics

Ethnoscience Posit Bio-Physics Sociocultural Model of Impairment-Disability: The Perceptual-Conceptual Layers Ethnoscience Posit Bio-Physics

Ethnoscience Ethno-Embodiment Posit Bio-Physics Sociocultural Model of Impairment-Disability: The Perceptual-Conceptual Layers Ethnoscience Ethno-Embodiment Posit Bio-Physics

Ethnoscience Ethno-Embodiment Embodied Anomaly Posit Bio-Physics Sociocultural Model of Impairment-Disability: The Perceptual-Conceptual Layers Ethnoscience Ethno-Embodiment Embodied Anomaly Posit Bio-Physics

Sociocultural Model of Impairment-Disability: The Experiential Ethnoscience Ethno-Embodiment Embodied Anomaly Impairment Basis of impairment fujnctionakl humortal spiritual Posit Bio-Physics

Sociocultural Model of Impairment-Disability: The Experiential Ethnoscience Ethno-Embodiment Embodied Anomaly Impairment Disability Basis of dis neg access response disability within impa irment not generalized by Davis Posit Bio-Physics

Sociocultural Model of Impairment-Disability: The Experiential Ethnoscience Ethno-Embodiment Embodied Anomaly Impairment Disability Handicap Posit Bio-Physics

Sociocultural Model of Impairment-Disability Ethnoscience Ethno-Embodiment Embodied Anomaly Impairment Impairment Disability Handicap Chronic Illness Posit Bio-Physics

Ethnoscience Ethno-Embodiment Impairment Embodied Anomaly Handicap Sociocultural Model of Impairment-Disability: The Embodied Political Layers Ethnoscience Ethno-Embodiment Chronic Illness Posit Bio-Physics Impairment Disability Handicap Embodied Anomaly

Access Participation Barriers Access Barriers Sociocultural Model of Impairment-Disability: The Embodied Political Layers Access Participation Barriers Access Barriers

Ethnoscience Ethno-Embodiment Impairment Embodied Anomaly Handicap Sociocultural Model of Impairment-Disability: The Embodied Political Layers Ethnoscience Ethno-Embodiment Impairment Embodied Anomaly Handicap Disability Access Barriers Chronic Illness Posit Bio-Physics

A FIELDWORK MAP: Sample Valued Cultural Domains Ritual and Spiritual Life

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Access Barriers and Experience of Exclusion Ritual and Spiritual Life

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Access Barriers and Experience of Exclusion Ritual and Spiritual Life Belief Practice Denominational Nondenominational Meaning Form Structured Unstructured

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Ritual and Spiritual Life Access Barriers and Experience of Exclusion Education and Training

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Ritual and Spiritual Life Access Barriers and Experience of Exclusion Education and Training

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Access Barriers and Experience of Exclusion Ritual and Spiritual Life Education and Training Meaning Form Structured Unstructured Formal Content Format Informal

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Ritual and Spiritual Life Access Barriers and Experience of Exclusion Education and Training Family and Household Life

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Ritual and Spiritual Life Access Barriers and Experience of Exclusion Education and Training Family and Household Life

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Access Barriers and Experience of Exclusion Ritual and Spiritual Life Education and Training Family and Household Life Meaning Form Structured Unstructured Orientation Procreation Public Intimate

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Access Barriers and Experience of Exclusion Ritual and Spiritual Life Education and Training Family and Household Life Economic Activities

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Ritual and Spiritual Life Access Barriers and Experience of Exclusion Education and Training Family and Household Life Economic Activities

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Ritual and Spiritual Life Access Barriers and Experience of Exclusion Education and Training Family and Household Life Economic Activities Earning Expectations Reality Assets

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Ritual and Spiritual Life Access Barriers and Experience of Exclusion Education and Training Family and Household Life Economic Activities Political Life

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Access Barriers and Experience of Exclusion Ritual and Spiritual Life Education and Training Family and Household Life Economic Activities Political Life

A FIELDWORK MAP: Sample Valued Cultural Domains Access Barriers and Experience of Exclusion Ritual and Spiritual Life Education and Training Family and Household Life Economic Activities Political Life Structured Policy Office Unstructured

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Access Barriers and Experience of Exclusion Ritual and Spiritual Life Education and Training Family and Household Life Economic Activities Economic Activities Political Life Sexuality Communication

A FIELDWORK MAP: Sample Valued Cultural Domains Access Barriers and Experience of Exclusion Ritual and Spiritual Life Education and Training Family and Household Life Economic Activities Political Life Sexuality Communication Meaning Form Structured Unstructured

A FIELDWORK MAP: Access and Exclusion in Sample Valued Cultural Domains Access Barriers and Experience of Exclusion Ritual and Spiritual Life Economic Activities Political Life Sexuality: Sexual Access Education and Training Communication: Communication Image Family and Household Life

A FIELDWORK MAP: Mapping Embodied Access Exclusion Access Barriers and Experience of Exclusion Economic Activities Ritual and Spiritual Life Political Life Axis of Access Exclusion Sexuality Education and Training Communication Family and Household Life

A FIELDWORK MAP: Sample Valued Cultural Domains Access Barriers and Experience of Exclusion Ritual and Spiritual Life Education and Training Family and Household Life Economic Activities Political Life Sexuality Communication Emic/Etic Negotiated Disability Threshold

Individual Approach

Life Course Event History Model Status or Role 4 Events Transformation 3 Status or Role 3 Transformation 2 Status or Role 2 Transformation 1 Status or Role 1 Time

Historical Context Devva’s Life Course Trajectory b Participation Barrier Domains: Ritual and Spiritual Life Education and Training Family and Household Life Economic Activities Political Life Communication Sexuality Threshold Experience of Disability Impairment Access Participation Barriers Threshold Devva’s Life Course Trajectory Threshold 1950 Birth 1960 Adolescence 1970 Graduate School 1980-90 Career 2000 Aging

Exclusionary Access Strategies Sociocultural Model of Impairment-Disability: The Embodied Political Layers Oppression Discrimination Segregation Exclusion Marginalization Exclusionary Access Strategies Access Participation Barriers Inclusionary Access Strategies

Exclusionary Access Strategies Cross-Cultural Sociocultural Model of Impairment-Disability: The Structural-Instrumental Ethno-Embodiment Exclusionary Access Strategies Embodied Anomaly Access Barriers Impairment Ethnoscience Handicap Disability Accommodation/compensation accommodative VS COMPENSATORY RESPONSES TO IMP AND DISABILITY IN POLICY ELEVATE ACCESS ACCESS QAS UNDERTHEORIZED! Rules Inclusionary Access Strategies Chronic Illness Posit Bio-Physics

Ethno-Embodiment Access Barriers Embodied Anomaly Handicap Disability Sociocultural Model of Impairment-Disability in the USA The Structural-Instrumental Ethno-Embodiment Exclusionary Access Strategies Compensation Access Barriers Embodied Anomaly Functional Impairment Handicap Disability Ethnoscience Accommodation/compensation accommodative VS COMPENSATORY RESPONSES TO IMP AND DISABILITY IN POLICY ELEVATE ACCESS ACCESS QAS UNDERTHEORIZED! Policy Inclusionary Access Strategies Accommodation Chronic Illness Posit Bio-Physics

Closing Devva on Fieldwork: Our Fieldwork Map could also be used in literature, history, and even in technology. It provides concrete places to start data collection that can help negotiate hidden and stated researcher bias without the DISappearance of disability that occurs in a radical relativistic approach or in a DISmodernism universalizing approach. Russ on Epistemology and Theoretical Development: In this working model we want to engage our colleagues in a true interdisciplinary approach not constrained by different epistemological validities. We want to celebrate the complexity of concepts of impairment-disability because therein lie there staying power. --Close with story about Abby putting her head in her hands down on her desk saying “Ohoooooooooo it's so complicated.”