Note: This wonderful article has a lot of anthropological information that may seem irrelevant to our philosophical interests. However, to appreciate the force of the authors' points you should try to follow at least the broad outlines of their discussions of various ethnic groups, perhaps even keeping an atlas or encyclopedia at your side as you work through this piece.

A preliminary common-sense definition of disability might be that it is a lack or limitation of competence. We usually think of disability in contrast to an ideal of normal capacity to perform particular activities and to play one's role in social life. Sickness also inhibits ability, but we distinguish between sickness, which is temporary (whether ended by healing or death), and disability, which is chronic. In principle, disabled people cannot be cured; they may be rehabilitated. Disability is used to refer to limitations resulting from dysfunction in individual bodies and minds. By metaphoric extension, we may speak of social disabilities such as poverty or race. But the core meaning of disability for most of us is a biopsychological one. Blindness, lameness, mental deficiency, chronic incapacitating illness -- these are prototypical disabilities.

The International Year of Disabled Persons in 1981, followed by the United Nations Decade for Disabled Persons declared by the United Nations in 1983, put disability into a global context and posed the question of how it may be understood in a multicultural world. How are deficits of the body and mind understood and dealt with in different societies? How is an individual's culturally defined identity as a person affected by disability? What processes of cultural change shape local perceptions of disability? Through a series of case studies, this book provides some preliminary answers to these questions.

A great deal of work has been carried out by psychologists and sociologists on disability and rehabilitation in Northern (European and North American) societies. A rich literature and several journals attest to the empirical and theoretical development of the field. Rather belatedly, anthropologists are now beginning to write about disability as well. In the introduction to a recent special issue of Social Science and Medicine devoted [4] to cross-cultural perspectives on disability, Nora Groce and Jessica Scheer (1990) point to the slow emergence of anthropological research in this field and the need for holistic conceptualizations of persons in their cultural contexts. Yet the articles in that issue are based on research in North America, as are most of the earlier anthropological contributions (Ablon 1984; Edgerton 1967; Estroff 1981; Groce 1985; Murphy 1987). Work on disability in Southern countries (we use "Southern" to mean non-European and non-North American countries) has been mostly in the area of mental health; chronic mental illness, epilepsy, and mental retardation have attracted more attention than sensory or motor disabilities. Robert Edgerton was a pioneer here, not only through his East African research but in his attempts to formulate general cross-cultural questions about disability and deviance (Edgerton 1970,1985). He showed that attitudes toward people with impairments of their mental facilities varied greatly in non-Western cultures, from negative discrimination, to acceptance, and even to the positive attribution of supernatural powers.

Much research in medical anthropology has a "therapeutic theme." It has concentrated on conceptions of illness and disease, on modes of healing, and on the interaction between patient and practitioner. Studies of disability require us to move away from the clinic toward the community, where individuals and families live with deficits. Cultural assumptions about the body and personhood must be seen in the context of ordinary social interaction. We are less concerned with disease than with its long-term consequences and more concerned with adjustment than with therapy. Impairment raises moral and metaphysical problems about personhood, responsibility, and the meaning of differences. Questions about autonomy and dependence, capacity and identity, and the meaning of loss are central.

There is a growing consciousness in Europe and North America of disablement as a human and social issue that touches us all, the disabled and the "temporarily abled" as well. Powerful popular accounts by and about persons with disabilities articulate the experience of impairment (e.g., Sacks 1985, 1989). Political activism by interest groups has created awareness of how society handicaps people with disabilities. Moreover, the transition from acute to chronic morbidity and the perceived failure of biomedicine to cure other conditions as effectively as it does infectious diseases means that disablement poses an ideological challenge, indeed a crisis, for health care in industrialized society (Williams 1991). It is timely and instructive to examine some of these issues in a cross-cultural perspective.

The method of cultural juxtaposition (Marcus and Fischer 1986:157ff.) is well established in anthropology as a way of providing perspective on our own situation. In assembling articles about disability in very different cultural contexts, we follow the tradition of juxtaposition, and we hope that these accounts will be useful for those primarily interested in disability in [5] Northern countries. But we want to be wary of a pitfall of cultural juxtaposition: our tendency to look at other cultures in terms of our own problems and thus to fail to grasp the premises upon which other people are operating. We have tried to be sensitive to this danger, in part through awareness of the assumptions about disability we bring to the study of other cultures. This is particularly necessary as rehabilitation programs are established Southern countries; we hope that people working with health development in those settings will find the juxtapositions illuminating as well.

A UNIVERSAL DEFINITION?

Attempts to universalize the category "disabled" ran into conceptual problems of the most fundamental sort. Differing definitions made it difficult to document the extent of the problem. The first estimates by the World Health Organization were that 10 percent of any population was disabled. Later these figures were modified to 6 or 7 percent, giving a global figure of 245 million disabled people (E. Helander 1993). Estimates depend on what counts as disability (the first figures included malnutrition), on how severe an impairment must be before it is considered disabling, and on how categories are implemented in actually gathering data. Although a number of surveys have been carried out in developing countries, we can still make only a qualified guess about statistics (Renker 1982). Any epidemiological study involves cultural factors (Johansson 1991), and cultural factors are especially involved in attempts to count cases of disability.

The World Health Organization definition of disability is logically stringent and designed for universal application. The International Classification of Impairments, Disabilities, and Handicaps (WHO 1980) is based on the model of the International Classification of Diseases, but because it attempts to categorize the consequences of disease, it includes a consideration of social contexts.

An impairment is defined as "any loss or abnormality of psychological physiological, or anatomical structure or function" (WHO 1980:27). The concept bears close resemblance to Arthur Kleinman's definition of disease as "a malfunctioning of biological and/or psychological processes" (Kleinman 1980; 72). Like disease, impairment is defined "primarily by those qualified to judge physical and mental functioning according to generally accepted standards" (WHO 1980: 27).

While impairment relates to constituents of the body (the "organ" level), disability has to do with "compound or integrated activities expected of the person or of the body as a whole, such as are represented by tasks, skills and behaviour." It is defined as "any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being" (WHO 1980:28). Handicap relates [6] to the social consequences of deficiencies in organs and activity performance. It is defined as "a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual" (29). Handicap depends on valuations and expectations that put the disabled person at a disadvantage. The WHO manual states explicitly that valuation depends on cultural norms.

The formulation of these concepts represents a valuable attempt to move beyond the restrictions of straight biomedical classifications. Nevertheless, the taxonomy is based on a biomedical concept, that of impairment; disability and handicap are consequences of impairment (itself a consequence of disease or trauma). It is on the basis of the biomedical definition of impairment that the classification is proposed as a universal tool. The primacy of the biomedical concern is reflected in the fact that the list of impairments is far more extensive and detailed than that of disabilities, which is again more elaborated than that of handicaps.(1) Most anthropologists would prefer a cultural relativist position rather than the universalizing approach proposed by the WHO (and this is reflected in the fact that few of them have chosen to use the WHO definitions systematically).

An example may illustrate the problem. A Malian and a Norwegian researcher set out to describe those qualities of an individual which might inhibit the ability to play normal roles among the Kel Tamasheq (Tuareg). They explain the Tamasheq notion of fault, or "default," and exemplify it by citing old age and immaturity (making one physically dependent), illegitimate birth (making one socially anomalous), and ugliness (rendering it difficult to marry). They list Tamasheq terms for a variety of faults, including deafness, excessive freckles, protruding naval, absentmindedness, and flabby or small buttocks (Halatine and Berge 1990:58-59). Most of these impairments are not on the WHO list and several, like illegitimate birth, are social and not "organic" problems. Others are organic but would never be seen as impairments by biomedical authorities. But the point they want to make does not have to do with identification and classification, but with the very notion of "fault" itself and the Tamasheq view of personhood.

Cultural relativism, the idea that phenomena must be understood within their relevant cultural contexts, takes two forms. Within discussions of disability, a "weak relativist" position is common. The point here is that the disadvantage posed by a disability depends on the capacities most prized or needed in a particular context. One of us remembers visiting the Alhambra many years ago -- the lovely view over the town with the Sierra Nevada rising magnificently above, and the plea chalked on a wall of the fortress: "Give alms, woman, for there is nothing worse in all the world than to be blind in Grenada." The idea that it is worse to be blind in the midst of beauty, or mentally retarded in a setting that values educational achievement, or [7] crippled where all earn their living by hard physical labor, is commonly accepted. However, few anthropologists would be satisfied with this form of relativism, because it remains at the level of specific functions and tasks and ignores the way in which culture structures whole life worlds, imbuing individual variations of the human condition with significance more far-reaching than the simple ability to perform a given activity.

"Radical relativism" seeks to reveal basic assumptions about what it is to be a person, and what kinds of identities and values exist in given social contexts. How important is individual ability as a source of social identity? What is it people are trying to achieve? The strong version of relativism questions the terms of analysis and attempts to uncover the categories implicit in other worldviews. The concept of disability itself must not be taken for granted. In many cultures, one cannot be, "disabled" for the simple reason that "disability" as a recognized category does not exist. There are blind people and lame people and "slow" people, but "the disabled" as a general term does not translate easily into many languages. In this volume, Aud Talle (chap. 3) explains that the Maasai term used to translate the English word disabled actually refers to a lizard that walks in an awkward way. The emphasis is on physical movement, so conditions like mental retardation or chronic mental illness are not included. The concepts of disability, handicap, and rehabilitation emerged in particular historical circumstances in Europe?(2) As a social identity, "disabled" is only now being created in most Southern countries -- through surveys, research projects, rehabilitation programs, and government policy.(3)

EURO-AMERICAN DISABILITY

Cross-cultural studies of disability must involve consideration of its cultural construction in Western society. We need this clarification not only in order to understand case studies from Europe and North America but also because Western (or Northern) concepts, organizations, and practices are carried over to other contexts and because culturally specific assumptions are often implicit in our analyses.

A fundamental theme in the contemporary Western discourse on disability is the assumption of the desirability of equality-understood as sameness or similarity. The terms handicap, disability, and rehabilitation themselves provide clues to this supposition. Etymologically, handicap was originally a game, a kind of lottery, in which the winner paid a forfeit; the umpire held the money in his hand in a cap. Later, the term came to be used in relation to competitions in which unequal competitors were weighted so as to make the match more equal. Thus the word has connotations of competition and efforts to create equality. Disability implies a deprivation or loss of a needed competency or qualification, in contrast to inability, which suggests an [8] inherent lack of power to perform a thing. This notion of loss is underlined by the response to disability, rehabilitation, which implies restoration to a previous condition. There is an underlying ideal of equality lost and restored, and of the right to be able to participate equally.

Western concepts of equality and individual rights are central to a notion of person that Louis Dumont has called "Homo aequalis." Dumont traces a distinction between a notion of equality as a political ideal that recognizes innate differences (the kind of equality of which Rousseau wrote), and the nineteenth-century American concept of equality, which tended toward an ideal of innate similarity. In discussing Tocqueville, Dumont writes:

If equality is conceived as rooted in man's very nature and denied only by an evil society, then, as there are no longer any rightful differences in condition or estate, or different sorts of men, they are all alike and even identical, as well as equal. This is what Tocqueville says: where inequality reigns, there are as many distinct humanities as there are social categories, the reverse being true in egalitarian society. (Dumont 1980:16)

It is this theme of similarity and difference which Henri Jacques Stiker (1982) follows in tracing the history of impairment in Western society. While neither he nor Dumont is interested in a cynical deconstruction of the idea of equality, both draw attention to possible consequences of the pursuit of equality: intolerance of innate diversity and individualism which denies the social nature of persons. This concern is so fundamental for Stiker that he begins his history by declaring his own position-that the love of difference leads to humane social life, while the passion for similarity brings repression and rejection.

Western conceptions of disability are formed in the context of a centralist state that imposes a universal code through legislation. Stiker argues that legislation gives to infirmity an existence and a consistency it never had before--definition, criteria, and degrees of severity. People with infirmities become a marked group; they are given a social identity, as citizens who have the same rights as others and should be integrated like ordinary people. They have a double self-image: as injured beings and as citizens/workers like everyone else. "Paradoxically, they are designated so as to disappear, they are named so as to go unmentioned" (Stiker 1982:149; our translation).

Stiker draws attention to the contradictions of this situation; the culture of "as if" would negate handicap, but in pretending that everyone is identical, it does not make them equal. In fact, this may be seen as a kind of confinement-of the different in the common and familiar. It is this contradictory situation that Robert Murphy and his coauthors call "liminal." The word may be misleading, in that it suggests the possibility of transition to another state. But the point they make fits well with Stiker's assessment of the paradoxical position of people with impairments. In American [9] middle-class culture, disability is treated as unspeakable and invisible. Children are taught not to point, stare, or mention the impairments of people they meet. "And so we are treated to the paradox of nobody 'seeing' the one person in the room of whom they are most acutely, and uncomfortably aware" (Murphy et al.1988:239). Such differences are painfully embarrassing in a society where differences are supposed to be compensated so that the ideal of equality cum similarity may be maintained.

Euro-American assumptions about disability are not only based in a particular political philosophy but are elaborated through a set of laws, administrative procedures, medical diagnoses, welfare institutions, professional specializations, and business interests. In Europe and North America, disability is a political privilege entitling one to financial support and a series of services. The state assigns to physicians the task of determining who is entitled to these rights. In this way, the political issue of redistribution, which involves separating the deserving from the undeserving, becomes a clinical problem (Sundby 1990). In the Scandinavian countries, doctors must decide at what point alcoholism is severe enough to entitle one to an "invalid pension." In the United States, Social Security benefits can be awarded only to sufferers of persistent pain, "when medical signs and findings show a medical condition that could be expected to produce the pain" (Osterweis et al. 1987:51). In her analysis of the history of disability as an administrative classification, Deborah Stone (1984) examines the tendencies toward expansion of the category. Various interests are served by maintaining flexibility in definitions and by continually incorporating new conditions (chronic fatigue syndrome, fibromyalgia) as disabling. Although cast in biomedical terms, the determination of disability involves political decisions about the distribution of social goods. "Instead of seeing disability as a set of objective characteristics that render people needy, we can define it in terms of ideas and values about redistribution" (ibid.: 172). Nevertheless, the ongoing discussion as about objective criteria and measurements of incapacity, precisely because the state must be seen to be distributing (increasingly) scarce goods in a (seemingly) fair and systematic way.

The development of disability as a concern of the state was accompanied by the emergence of rehabilitation as a medical and paramedical specialization, beginning in the struggle for professional control over the damaged bodies of the First World War (Gritzer and Arluke 1985). In the United States, as the population aged and suffered more chronic diseases, as federal legislation on disability expanded, and as the health insurance industry developed, disability became big business. In a political-economic approach to rehabilitation in America, Gary Albrecht (1992) argues that disability has been institutionalized and reified, and that rehabilitation goods and services have become commodities with an ever-increasing market. A consequence of this trend is that people with disabilities become consumers; they [10] develop an identity and form groups as users of the services available to them. The disability rights movement is still young and involves only the most active consumers. But it demands a part in shaping the rehabilitation marketplace to reflect the needs and values of the consumers themselves (ibid.: 285ff.).

Thus disability in Europe and North America exists within -- and is created by -- a framework of state, legal, economic, and biomedical institutions. Concepts of personhood, identity, and value, while not reducible to institutions, are nevertheless shaped by them. Notions of citizenship, compensation, and value lost through impairment and added through rehabilitation are institutionally reinforced constituents of disability as a cultural construct. So is the idea that disability is a medical condition for which technical expertise (educational, psychological, social) is the answer. In countries of the South, where this kind of institutional infrastructure exists only to a very limited degree, disability as a concept and an identity is not an explicit cultural construct. The meaning of impairment must be understood in terms of cosmology and values and purposes of social life.

DIFFERENCE AND PERSONHOOD

One of the basic questions for cross-cultural research on disability is that of how biological impairments relate to personhood and to culturally defined differences among persons. Are people with impairments impaired people? Are they valued differently than other members of society? Irving Zola speaks of the invalidation and infantilization of disabled people; one's validity as a full person is denied. Being different means being less (Zola 1982:235-237). Murphy uses concepts of liminality and impurity to characterize this state of ambiguous personhood. The Norwegian author Finn Carling captured his sense of being not only devalued but dehumanized, in the title of his book And Yet We Are Human (1962) .

In order to begin to deal with such issues, it may be useful to distinguish between humanity and personhood. Accounts from some societies suggest that individuals with certain kinds of impairments or biological characteristics may not be considered human. Or rather, there may be a point at which such an individual's humanity is in doubt. In many Northern countries, the abortion of a defective fetus is considered more acceptable than that of a "normal" one, suggesting that the "human" status of an impaired individual is more negotiable. The debate about whether severely impaired infants or even adults should be kept alive also involves the attribution of humanity, as the revealing term "human vegetable" implies. In many societies, birth defects are more likely to be seen as inhuman than defects acquired later in life, when humanity and personhood are already established. The ethnographic literature contains many reports of infants who are not [11] anthropomorphized and are expected to die. Nancy Hughes describes how impoverished women in northeast Brazil neglect these "poor little critters" and compares them to Nuer "crocodile infants" and Irish "changelings," all excluded from the realm of humanity. "The sickly, wasted, or congenitally deformed infant challenges the tentative and fragile symbolic boundaries between human and nonhuman, natural and supernatural, normal and abominable" (Scheper-Hughes 1992:375). What is significant for our purposes at the moment is that the cultural conceptualization of humanity is variable; the anomalies that may be seen as inhuman differ greatly from one society to another, and they do not correspond directly to biomedical definitions of impairment. Twins are not considered human by the Punan Bah (chap. 2) nor are children born with teeth by the Bariba (Sargent 1982).

Such examples may easily become stereotype generalizations about the cultural construction of disability; in fact they are only a simple beginning to an investigation of disability and personhood. If personhood is seen as being not simply human but human in a way that is valued and meaningful, then individuals can be persons to a greater or lesser extent. There may be kinds and degrees of personhood, and the qualities of a person are evolved and confirmed throughout life. (Personhood refers to the evaluation of others in contrast to the reflexive sense of self.) So what are the significant characteristics of a person? Individual ability? Community membership? Family? There is no single answer for any culture, nor is there a universal set of priorities. For several of the societies described in this book, being a member of a family and having children are far more important to being a person than work capacity or appearance. The contrast between egocentric and sociocentric concepts of personhood (Geertz 1973; Schweder and Bourne 1982) provides one kind of comparative framework here. Where a person's worth is conceived in terms of individual abilities and achievements, we would expect impairment to diminish personhood. But where persons are primarily considered in terms of relations to others, this would not necessarily be the case. Such a dichotomy must be used with care, however, for both kinds of qualities are recognized everywhere. The real challenge lies in understanding the way particular characteristics, be they impairments or gifts, inhibit or facilitate individual achievements and relational integration in a given cultural world.[4]

One of the recurring themes in the American (and European) conceptualization of disability is that of autonomy and dependence. In fact, Murphy asserts that they are universal aspects of all social relationships and that dependency is a problem that all disabled people must confront (Murphy 1987:156). But he also shows how reliance upon another person may be encompassed by love and a feeling of mutuality. That is to say, dependency may have different values and implications. We have already suggested that in some cultures, sociality (family and community membership) may out weigh [12] individual ability as a value. Ann Goerdt's study of physical disability in Barbados makes an interesting comparison because it falls somewhere between the egocentric concern with independence and the sociocentric one with community. The Barbadian conception of personhood emphasizes a balance between autonomy and connectedness. "At the same time that one should demonstrate autonomy, one must not be too independent of others .... for the unity of the group depends not only on the contribution of each member, but also on each member's willingness to accept help from others" (Goerdt 1984:88). Thus Barbadians conceptualize disability not just in terms of helplessness, dependence, and infantilization (failure of autonomy) but also in terms of limitations on social interaction (failure of connectedness), which they sometimes describe as "hiding."

SOCIAL ORGANIZATION AND DISABILITY

Cultural conceptualizations of difference must be seen in relation to social contexts. Cross-cultural literature on disability employs two general ways of doing this: examining overall features of social organization, and focusing on the implications of specific social characteristics (gender, age, class) within a society. The first concern has been the most common, because of the interest in juxtaposition and comparison of whole societies, indeed of whole kinds of societies.

A broad social structural hypothesis has been proposed by Scheer and Groce to explain the differing situations of disabled people in small-scale and complex societies. They suggest that where face-to-face contact between individuals is frequent, and people have multistranded and diffuse relations with one another, social identity is based on a variety of family and other characteristics.

In such situations, a single personal characteristic, such as a physical impairment, does not generalize to define one's total social identity. In complex societies, however, social relationships and contexts are more impersonal and task specific, and individuals are not related to each other in varied contexts. Accordingly, visible physical characteristics are commonly used to classify and socially notate the individual's identity. (Scheer and Groce 1988:31-32)

The distinction made here between traditional, small-scale societies and complex societies involves a contrast not only in types of social identity but also in social participation and support of disabled individuals. From several studies, a picture emerges of a kind of "natural integration" of disabled people as members of families and communities in simpler societies.(5) Perhaps the best-known example is Groce's own ethnohistorical study of deafness on Martha's Vineyard, in which she describes a society where everyone, hearing and deaf, spoke sign language, and where deaf people farmed and [13] fished, married and had children, participated in town meetings and ordinary social interaction. They were remembered as unique individuals, never as "the deaf" (Groce 1985:4).

However, we will argue that as an analytical tool, the dichotomy between traditional/small-scale and complex societies has significant limitations. Not all relationships in complex societies are impersonal and task specific; in many situations, identity is based on criteria other than physical characteristics. And even in small-scale societies, there are kinds of impairments that may dominate social identity; inability to have children limits the strands in relationships. Not all relationships are multistranded, unless one never leaves one's own village; while people may not attribute a primary identity as impaired to their own neighbors, they are likely to do so in relation to people they know less well (see Goerdt 1984:26-27 on madness, and Whyte, chap. 12, on epilepsy). Furthermore, very few societies in the world today are small-scale in the sense of being untouched by national institutions and the global economy. Nicolaisen suggests that wage labor and the timber industry impinge upon the possibilities for disabled Punan Bah individuals to be economically integrated. Talle shows how Maasai families may use national institutions such as schools and the home for disabled children.

The point that identity does not generally derive from impairment in small-scale societies should not distract us from recognizing that there may well be roles and activities where impairment is the central criterion for recruitment. All deaf children from Martha's Vineyard were sent to the American Asylum for the Deaf and Dumb in Hartford from the time of its founding in 1817 and at state expense; in the nineteenth century, they were better educated than other islanders (Groce 1985:77-78). In this respect, the island was not small-scale, and the identification of individuals by their impairment supported their participation in island life.

The other example that Scheer and Groce use as an illustration of a simple society with diffuse social roles is the community of San Pedro Yolox in southern Mexico, studied by John Gwaltney. Many adults, especially older ones, had been blinded by onchocerciasis, and Gwaltney shows how deeply embedded they were in village life through ties of real and fictive kinship. He also writes about the importance of begging expeditions, from which [14] blind people "derive a great sense of approved, purposeful participation in the life of their pueblo" (Gwaltney 1970:112). People were supposed to beg in other villages, but some also did so in their own. Clearly, begging requires identifying oneself as disabled,(6) and begging in other villages ... is ... a task-specific social relationship requiring a particular physical characteristic. In ordinary social interaction as well, blindness is an important part of identity, to judge from Gwaltney's account of how individuals expound upon their misfortune and receive commiseration (114). While Scheer and Groce point to an important dimension in relating role structures to social identity, the problem is that the polarity of two ideal type societies is too simple for the analysis of real cases.

In examining the characteristics of social organization relevant to disability, there are three important questions. First, what is the ability of the family to care for an infirm member? Demographic factors such as family size as well as the organization of the economy and social activities are important here. It has been claimed that the "phenomenon of the handicapped" emerges in European society in part as a function of the difficulties of the nuclear family in bearing the burden of care. Sociality (work, leisure, education) is disaggregated in space and time; the technical constraints of special care and training may require removing the person from the home, at least part of the time. This, together with the normative demands for conformity and achievement, places an enormous practical and psychological burden on a family, often on a mother (Stiker 1982:175).

Research in Africa has examined the way that households cope with caregiving in contemporary circumstances there. In Tanzania, Susan Whyte (1991) found that people with mental illness, retardation, and epilepsy were almost always cared for by their families and care was regarded as a family, not a community, responsibility. Because families were large, the burden of care could be shared. However, labor migration and poverty transform family situations. Sidsel Saugestad (1990) describes how in Zimbabwean villages it is often grandmothers who care for disabled children because parents (or unmarried mothers) are working in town. From Botswana, Benedicte Ingstad and coauthors (1992) describe a similar pattern. Labor migration takes away the healthy and able household members, leaving the old, the very young, and the infirm to survive on subsistence farming and often irregular remittances. Loyal and affectionate care may well mark the relations among these "weaker" members of a family. But that does not eliminate the need for cash and other assistance from the most "able" relatives. Coping with care is a matter of the disposition of family resources (Walman 1984) and also of the willingness to give such care priority over other needs and goals. Increasing pressures on families in developing countries may be instrumental in creating a demand for programs for the disabled, and thus a social category of "the disabled."[15]

The second question in examining social organization and disability is, How does the occupational structure of the society incorporate people with impairments? The organization of production, the degree of specialization and the nature of the work affect the degree to which people with impairments are able to participate. Where the family is the basic unit of production, it seems easier for people with disabilities to make a contribution Working conditions are flexible, tasks are varied so there is almost always something they can do, and there is support from other family member; and neighbors. Impairment does not usually disqualify people for work it subsistence production, domestic tasks, or even home-based handicraft production for the market. When labor is a commodity sold on a competitive market in fixed time and skill units, the participation of people with disabilities is more problematic.

We can take this question a step farther by asking whether impairment actually qualify people for certain occupations or whether some jobs are thought specially suitable. (For the moment we leave aside national vocational training programs for the handicapped.) The information on this point in historical and ethnographic literature is limited. In some places blind people were more likely to become singers, storytellers, or learned religious men. M. C. Narasimhan and A. K. Mukherjee (1986:2) mention the Surdasi, blind singers of India, called after a famous blind vocalist. In many countries, impairment is a valuable qualification for the occupation of begging. Studies from India describe the techniques of beggars displaying their defects: "arousing ... compassion by skillfully exhibiting their physical disabilities and diseased condition" (Chaudhuri 1987:33); "Some sat silently ... exposing their diseased part or physical handicap and thereby they tried to bang on the emotion of the passersby" (Misra and Mohanty 1963:40). In premodern Taiwan, beggars who lacked a suitably "pitiful image" might fake disability or exploit an impaired person as "a begging implement" (Schak 1988:47). Yet even though mendicancy is the most widely mentioned special occupation for people with impairments, probably no more than a fraction actually engage in it in societies where it is an option.

A final question concerns the existence of special programs, institutions, and organizations for disabled people. These may comprise laws and welfare benefits for the disabled as a generic category, as well as institutions and interest groups for people with specific kinds of impairment. Some excellent fieldwork accounts are based on participant observation in such institutions (Zola 1982) and with people defined in relation to an institution (Edgerton 1967; Estroff 1981) or organization (Ablon 1981; May and Hill 1984). By contrast, many disabled people in developing countries are not (yet) touched by any kind of special program; where deafness and blindness are not, as common as they were on Martha's Vineyard and in San Pedro [16] Yolox, a deaf or blind person might not know anyone else with the same impairment.(7) And special privileges are not usually granted because one is disabled (with the possible exception of the right to beg). However, as programs are introduced, and as organizations of disabled people are formed in developing countries (often with support from sister organizations in Europe and North America), new options are made available. Nayinda Sentumbwe (chap. 8) shows how "in-marriage" emerges from programs for the blind in Uganda. Goerdt (1990) examines relations of patronage in vocational programs for disabled people on Barbados. Even though nearly every country has at least some disability institutions, there is great variation, in their accessibility and in the ways they touch people's lives.

SOCIAL POSITION AND DISABILITY

So far we have discussed ways in which general qualities of social organization are related to disability. The emphasis has been on characterizing societies or identifying social features that affect impaired people in general. We turn now to the issue of variation within societies. How does impairment interact with factors like sex, age, and economic standing to create different situations within a social universe?

Recent work in North America is beginning to examine gender differences in disability. Adrienne Asch and Michelle Fine (1988) point out that disabled women are less likely to marry than disabled men, and if they do marry after the onset of their impairment, they are more likely to have a disabled spouse. The high value placed on women's appearance and fitness in American culture is only part of the explanation for this pattern. Asch and Fine emphasize the emotional components of American marriage, in which women are expected to be nurturant and to satisfy men's unacknowledged needs and dependencies (ibid.: 17). It is assumed that disabled women, burdened by their own needs, are less able to meet those of husbands. Murphy summarizes the different consequences of having an impaired spouse for men and for women: "Husbands become part-time nurses, which goes against social conventions, and wives find themselves with an additional child, which doesn't" (Murphy 1987:159).

Sentumbwe (chap. 8) found that in Uganda, even though blind women seemed to be at a disadvantage compared to blind men in terms of marriage, they also had an important option-to have children, even when unmarried. Through children a woman is fulfilled and respected; she develops new relationships through her children, and, paradoxically, she becomes more independent because she has someone to rely upon. Disabled men are not able to achieve parenthood so easily; future research may pursue the implications of this gender difference in relation to disability. [17]

The way in which parenthood interacts with disability has been examined by Shlomo Deshen and Hilda Deshen (1989) in their research on the relation between blind parents and seeing children in Israel. The authority of parents over their children is undermined by the general stigmatizing of blindness in Israel, of which children soon become aware. In order to strengthen their position, parents may emphasize blindness-linked assets, such as their ability to move officials to compassion or the fact that they are often better educated than their sighted relatives. A study of hearing children of deaf parents in the United States also shows the relationship between parent-child dynamics and the wider society. Paul Preston (1991) speaks of deaf people as constituting a highly endogamous, clearly demarcated cultural community. Hearing children born of deaf parents identify with this community and experience it as normal. But ultimately their membership is ambiguous because they can hear. They have a polarized understanding of deafness as viable and normal, and as stigma and deficit. Preston concludes by emphasizing that the meanings of disability are ultimately dependent on social context. It is necessary to examine significance from particular social positions.

A final point regarding the social positioning of disability is that differences in a family's social and economic status may be decisive. Bernhard Helander (1990:42-44) compares the perceptions and situations of two Somali boys with apparently comparable degrees of mental disability. One [18] belonged to a prestigious patrilineage and was well treated in the village. His "problem" was explained as due to the fact that his mother was not of sufficiently high status, but he was not regarded as mad nor was he humiliated in any way. The other boy was a homeless orphan, said to be possessed by a spirit. He was teased and despised, and children sometimes threw stones at him "trying to hit the spirit." Helander's message is that the explanatory models of disability in Somalia are partly shaped by the social positions of the actors. Among the Tuareg, Susan Rasmussen (1989) shows similar patterns of variation in explanations of impairment according to socioeconomic status.

Disabled people and their families construct the meaning and value of disabilities in the choices they make concerning production and reproduction. Didier Fassin's (1991) study of people with physical handicaps in Dakar demonstrates the economic constraints and potentials involved in marital and income-earning strategies. To marry off a disabled daughter means accepting a lower bridewealth than would be paid for a "normal" woman. But to obtain a wife for a disabled son requires the payment of a larger than normal bridewealth, a project that may take many years to realize. Sending disabled family members onto the streets to beg gives an immediate return; apprenticing them requires an investment of money that the family may not have and may well increase the profits of the employer. Beggars use their impairment as a tool to work for their families; apprentices provide a labor force for their masters, and only in the long run do they have a chance of obtaining worthwhile work that may benefit their families. Whether or not impairment handicaps one on the marriage market or becomes a tool for work as a beggar depends not on Senegalese conceptions of disability alone; it is also determined by the economic and social situation of the family.

Research in rural Botswana showed that most families cared well for their disabled members. In the few cases that seemed to show abuse and neglect, the family was in extremely difficult circumstances. Care was less a function of "attitudes" toward disabled family members than of household resources. In situations of extreme poverty, people with disabilities are particularly vulnerable.

ANALYZING PROCESSES

Medical sociology has long been concerned with the processes of interpreting, negotiating, and labeling impairments. Since the 1960s, within the general approach of symbolic interactionism, analytical issues have emerged which continue to shape disability studies. One is the notion of stigma and the ways in which it is negotiated in social interaction (Goffman 1963). Related ideas of "spread" and "deviance disavowal" (Davis 1961) are tools for analyzing the interpersonal management of difference. Another is the [19] concept of "career," used to describe the ascription of asocial role and identity to a "deviant" individual. One of the points of labeling theory is that the identification of a singularity by social agencies has consequences for the subsequent career of the impaired person; primary deviance, once labeled, is encompassed by secondary deviance that is socially determined (Scheff 1966; Scott 1970). Whether describing face-to-face interaction and the problems of identity management, or the interaction of individuals and families with therapeutic institutions, the emphasis in symbolic interactionist studies is on the social production of reality and on the way in which individuals are both subjects and objects in interaction with others. Interpretations are social processes.

This kind of approach to the dynamics of disability has been influential in anthropological studies as well, although certain differences in emphasis are evident. In this book, Lisbeth Sachs (chap. 11) follows the process of labeling an infirmity, demonstrating how complex this process can be in a changing, multicultural situation, where different conceptions coexist. There is no simple acceptance of the doctors' identification of the problem. Sue Estroff finds it characteristic of anthropology to show how people identified as deviant "adopted, elaborated, and/or rejected their deviant identities while interacting with the culturally defined values and actions of others" (1981:211). She examines the cultural values and practices of American society toward "crazy" people and the way those so defined manipulate and use the dominant values. Like Sachs and others (Murphy et al. 1988), she tries to characterize broader cultural patterns of meaning and value, rather than social situations or social careers. In contrast, some of the sociological studies tend to take culture for granted.

In an overview of sociological research on chronic illness, Uta Gerhardt (1990) points to a convergence between medical sociology and ethnography in their common "self-consciousness" about fieldwork and methodology. There is a recognition that reality is constructed in a double sense: researchers make (second-order) constructions of actors' (first-order) interpretations. Applied to the study of disablement, this entails a careful examination of the processes by which disabled people and their families define their conditions and situations as well as critical attention to the way in which data on disability are represented in analysis.

The concern with processes of construction and representation is reflected in the intense interest in discourse analysis, which alerts us to the necessity of looking critically at how and by whom a picture is drawn. A discourse is a way of talking about or dealing with a phenomenon. By words, institutions, and practices, discourses realize certain assumptions or views and thus construct their object in a particular way. Rehabilitation specialists present images of the pathetic situation of disabled people in developing countries, ethnographers make elegant analyses of the cosmology of [20] anomaly, while families themselves may cast their situations in terms that are neither pathetic nor congruent with one systematic cosmology.

Life histories and narratives by disabled people have assumed a central place in the literature on disability. In part this reflects the desire to insert the individual into social and cultural analyses (Whittemore et al. 1986). In part it mirrors the experiential and interpretive concern of contemporary sociology and anthropology. The interest in texts and narrative analysis also fits in with the popularity of individuals' stories. But for our purposes, what is significant about life histories is that they invite a diachronic and processual view of disability.

We may distinguish various kinds of accounts as well as different analytical definitions of process. Life histories or case histories may be defined as accounts compiled by a researcher in cooperation and interaction with an informant. They may incorporate descriptions of context and observations made by the researcher (Good et al. 1992; Kleinman 1988; Langness and Levine 1986; Wilson 1947), and they may include considerations about how the account was produced and what it means (Crapanzano 1980). Many accounts of lives with disabilities are elicited through interviews in which individuals tell the history of their impairment and search for treatment, and of the way their problem is interlinked with other aspects of their lives (Good et al. 1992). Autobiographical narratives of the kind analyzed in chapter 6 are written on the subject's own initiative and are not directly a product of dialogue, but they are products of communication in an extended sense. They are influenced by the writer's motivations, and they are created in and for a social context.(8)

The production of a personal, narrative about disability is itself a process and has an effect on producers and listeners. The narrative reconstruction of lives may be a mode of normalizing problematic experiences by asserting the legitimacy of suffering and the moral competence of the narrator (Gerhardt 1990:1154). By telling the story in a meaningful way, the narrator is transformed. Moreover, the story may also serve as a "model for" other sufferers who are seeking a meaning in their experience (see Geertz 1966). Judith Monks and Ronald Frankenberg (chap. 6) call this the exemplar function -- the narratives show "the way it is"and "the way it should be."

Both the form of these narratives as autobiographical accounts of disability and the content with its emphasis on self and body through time appear to be characteristic of European and North American culture. We have virtually no autobiographical material on the experience of disability in non-Western contexts and very few life histories. Even the case examples sprinkled through the literature as illustrations do not thematize the dynamics of self and body, or the existential problems of the individual. To the extent that processes of narrative reconstruction can be traced, they seem to be concerned with asserting moral competence through interpreting the [21] causes of disability rather than the process of living with it. There is an emphasis on events preceding the onset of impairment, and on moral relations to other people and spiritual beings. Through these kinds of accounts, the impaired individual is construed in relation to other people and the cosmological ,environment, rather than as a self in relation to a body. The temporality involved is not that of individual development; it is the link from an event like a parental curse or the breaking of a taboo to the resulting infirmity in a family member.

HISTORICAL TRANSFORMATIONS

The kinds of processual analysis mentioned so far have to do with the movements and efforts of people within the possibilities of a given place and historical period. But any overview of disability and culture should also consider the historical processes through which the range of possibilities and the nature of practices change. One way of analyzing such processes is Foucault's "genealogical method" (Armstrong 1990), which traces the social history of discursive practices. Aside from Foucault's own study of madness (1973), the best example of that method applied to disability is the work of the French scholar, Henri-Jacques Stiker (1982), which appears to be virtually unknown by anglophone researchers. Susan Reynolds Whyte (chap. 14) summarizes some of Stiker's analyses of European discourses on infirmity, in which Stiker examines the emergence of rehabilitation as technical and social adjustment of the individual. While Stiker's sweeping characterizations may be objectionable, his method of "historical juxtaposition" is stimulating and provoking. He succeeds. in revealing the conditionality of the categories, assumptions, and institutional practices by which disability is constructed. Aside from the Foucaultian work, there are a number of historical studies of disability and rehabilitation in Northern countries (AIbrecht 1992; Gritzer and Arluke 1985; Stone 1984; Straus 1965). However, there is little analysis of the historical processes under way in the countries of the South (but see Narasimhan and Mukherjee 1986 for an informative description of this process in India, and Farquhar 1987 for a biography of a remarkable figure in the history of rehabilitation in Zimbabwe).

The programs introduced in developing countries can be seen in terms of different models for work with disabled people, each model with its own historical and ideological background (Satapati 1989). We can distinguish specialized services, outreach programs, community-based services, and interest organizations. It is through the efforts of these programs, often with government or donor support, that legal, biomedical, and social identities for disabled people are being formulated .

Specialized, institution-based services are often the first type of organized assistance instituted in developing countries. They are impairment specific, [22] with schools for the blind among the first to be established. Usually they are started by organizations in the colonizing country, often on a religious or philanthropic basis. They are financed by a combination of sister organizations in the North and local contributions, sometimes with a little state support. This means a chronic situation of underfunding; in the case of schools, fees have to be charged, and that makes it impossible for many children to attend. Selectivity is further determined by the location of such institutions and their very limited capacity.

Previously, such specialized institutions sometimes became places for minimal care and confinement. (This was especially true of mental institutions, which in the early days were hardly more than depositories for people considered dangerous or whose families could not keep them.) Today there is an increased emphasis on special education and vocational training, a tendency that has also characterized institutional development in Northern countries.

A consequence of such institutional care and training is that "clients" are isolated from normal social life and may find it difficult to adjust to life in their communities when they leave the institution. Partly to counter such effects, many developing countries now offer special education to pupils living at home in the form of nursery schools, day centers, special schools, or special classes in normal schools.

Outreach programs sometimes grow out of specialized institutions in an effort to extend services beyond the fraction of disabled people who can get a place in the institution. In comparison to the need, however, these programs still cover only a few people. Even where decentralized special services are not an extension of an institution but an independent program, capacity is a problem. Costs are high and when resources are limited, appropriate services can only be offered to a few, selected according to criteria such as location, type of disability, or age-group.

Community-based rehabilitation (CBR) is the alternative, and it is the dominant. discourse (in the sense of both rhetoric and programmatic practice) in developing countries today. In line with the promotion of primary health care, WHO developed a plan for integrating rehabilitation services into local-level health care in order to make them generally available (E. Helander 1993). The key principles are low cost, simple technology, use of local resources, and community participation. The concept of CBR has now been taken up by many organizations and implemented in different versions.

A simple instruction manual for health workers, disabled people, and their families has been worked out by WHO and made available in various languages (E. Helander et al. 1989). Rehabilitation aids should be made of local materials, and family members should train the disabled in [23] activities of daily living. Schools, workplaces, and neighborhoods are encouraged to include them on an equal footing. Ideally CBR should be implemented through existing structures and based in the community in a cultural sense.

The CBR model developed by the International Labor Organization focuses more specifically on vocational training and the establishment of small production .units based on local resources. The ILO program calls for the adoption of a legal requirement that 2percent of all jobs in plants ands public institutions be reserved for disabled people.

David Werner proposes yet another version of CBR in his book Disabled Village Children (1987), written on the model of his pioneering handbook Where There Is No Doctor (1979). On the basis of his experience in a Mexican village, he sets forth a program with emphasis on mobilizing the disabled people themselves as the major force in rehabilitation work, which he de; scribes mainly as medical and physical treatment.

To what extent have these visions actually been realized in developing countries? Besides the usual donor reports, there are few independent studies of CBR programs. In Zimbabwe, Deliane Burck (1989) did research connected to an ILO project in which she problematized the principle of community basis. If it is to be taken seriously, greater attention must be paid to local conceptions of disability, folk and professional therapeutic ai practice, and the social position of disabled people, all of which she describes in her study. Patrick Devlieger (chap. 5) also emphasizes the necessity of taking local ideas and practices into account in implementing CBR programs. Benedicte Ingstad (chap. 13, and 1991) followed up a WHO project in Botswana over a two-year period, partly to evaluate the CBR model and partly to gather basic information on the conditions for disabled people in a rural African setting in light of the commonly expressed view that they were hidden and neglected by their families. She found that although the program was intended to be community based, it was in reality implemented from the top down and never really managed to activate the community in the rehabilitation process. It became more of an outreach than a CBR program.

The establishment of programs for the disabled proceeds at different paces and through different historical circumstances in each country. War and the subsequent efforts of governments to offer services and compensations to the injured veterans may precipitate development. Just as World War I, with its terrible production of mutilated men, led to a consciousness of disability and a whole set of rehabilitation institutions in Europe and North America, so have wars in countries of the South led to efforts to care for and recompense those who have suffered disablement. In the case of Nicaragua, government programs for disabled veterans were instituted as [24] other organizations for disabled people were also becoming active. Frank Jarle Bruun (chap. 10) shows the interplay of these forces in the development of a social identity for the handicapped in Nicaragua. In Zimbabwe, which also suffered a devastating civil war, the first major effort toward rehabilitation was the construction of a large institution for disabled veterans. Later, this institution was reorganized as a resource center for several disability groups, and the government has implemented a policy of decentralized community-based rehabilitation for not only war veterans but all disabled people.

While organizations for disabled people, charity organizations, have a long history in North America and Europe and are fairly well established in countries of the South, organizations controlled by disabled people themselves are relatively new in developing countries. They are based on the model of Northern groups and often cooperate with them. In Northern countries, such organizations are mainly concerned with the rights of disabled people; through publicity and lobbying, they attempt to change laws and policies in order to promote integration in all sectors of society. In Southern countries, the groups themselves often feel that the most immediate needs are for practical programs of rehabilitation. Many donors prefer to channel aid through such groups, and the future will no doubt see a considerable expansion in their numbers and activities. The question is to what extent such groups can represent and reach out to the broad majority of disabled persons and their families living in rural areas.

We began our introduction by mentioning the difficulty of trying to survey the global extent of disability. It may be fitting to conclude these remarks on historical changes by noting that the attempt to count was problematic in another way as well. In order to plan projects when the International Year of Disabled Persons was launched, surveys were carried out in several developing countries. In some cases, the surveys were so costly that they devoured the few resources available to institute programs. The very act of interviewing people about their infirmities raised their hopes that something was going to be done for them. A consciousness about disability was created without any follow-through. In a nutshell, this suggests a danger in the present situation-that people will come to be identified as disabled without any of the benefits to which that label might entitle them and which they may have been led to expect.

***

In this book we wish to relate disability to fundamental assumptions about humanity and personhood in different cultures. We ask if and how impairment affects one's value as a human being and one's position as a social person. Are persons with impairments impaired persons? To answer this question, our contributors relate concepts of disability to [25] notions about power and bodies, normality and order, individual capacity and social existence. But concepts of personhood and disability are..not just "found in" cultural analysis. They are asserted by the media, the clergy, health personnel, and development agencies; they are negotiated by parents, represented in ritual, contested or ignored by people with. impairment. As anthropologists, we know that they are grasped or glimpsed through the interaction and dialogues of fieldwork, systematized more or less rigorously, and written with varying degrees of authority and sensitivity. So the one question about disability and personhood leads to other questions. How is disability constructed in everyday interaction, in the telling of narratives, in the representations of scholars and the discourses of experts? How do these constructions change over time?

The chapters are grouped in two sections, each with a short introduction to give the reader a preview of what is in store and how the chapters relate to one another. In the first section, the theme is disability and the concept of personhood, examined in five cultural settings. In the second section, seven contributors explore the social contexts and processes in which impairments are interpreted and experienced. The final chapter is an epilogue that further considers the analytical issues involved in dealing with disability and culture. It suggests directions for further research and shows how the essays in this book point the way.

NOTES

1. WHO experience with the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) indicates the difficulties of universal taxonomies for phenomena subject to cultural variation. The foreword to the 1993 reprint of ICIDH, looking ahead to the planned revision of the document, remarks upon the problem: "An important task in the revision of the ICIDH will be to improve the presentation and illustration of the way in which external factors affect the ICIDH components. ... These factors ... are strongly culture-bound. It is unlikely that a universally acceptable classification of these determinant factors is achievable at present, for the same reasons that preclude a universally accepted classification of the determinants of health" (WHO 1980:5).

2. Two French sociologists have argued that in European history, the category of "the sick" has assumed meaning in relation to capacity to work and is the product of a double movement toward the individualization and the socialization of illness (Herzlich and Pierret 1987:50, 53). The same point can be made, perhaps even more strongly, about the status of "disabled," which connotes the incapacity of an individual to perform or achieve and at the same time suggests a group identity in relation to society.

3. The identification of individuals who were chronically unable to work began in early censuses in British African colonies. In Tanzania, in 1983, village offices were supposed to keep records of the number of adults in the village unable to work. These examples represent steps toward establishing a general category of "disabled people" based on working ability.

4. How impairment is thought to affect individual ability is culturally variable. The notion of "spread" -- deficit in some functions also spreads to others -- has been identified in American culture. Murphy provides the example of how the waiter gives everyone a menu except the man in the wheelchair, assuming that he cannot read. This contrasts with the idea of "compensatory forces" held by the Kel Tamasheq of Mali: they say that "God does not close an eye without opening another," that is, people who are disabled in one way are gifted in another. Blind people are good listeners, the lame are good advisers, and ugly women have a spellbinding smell (Halatine and Berge 1990).

5. It has been claimed that some societies have not yet reached the developmental stage in which they discriminate against disabled children (Grünewald and Jönson 1981). Although this way of putting it seems to be based on a combination of evolutionism and admiration for the noble savage, it points to the same contrast between simple and complex societies.

6. Begging has been described as a form of interaction which negates the usual rules of exchange in social life in that the beggar makes demands not on the basis of what he can give in return, but on the basis of what he lacks (Gomm 1975). Although a bodily or mental deficit does indeed function as a lack for which one is entitled to receive something, the giver may also be recompensed in achieving virtue. In this sense there is a kind of general exchange operating. Christianity, Hinduism, and Islam enjoin charity and mercy toward those in need. Thus disability is reported to have value as a source of income in Hindu India (see Bjune 1992). With the exception of Gwaltney's account (1970), most indications are that mendicancy is associated with cities and towns, marketplaces, and other centers, where it is possible to beg from people with whom one does not have other relationships.

7. Leper colonies form an important exception; the ones in Cuttack, India, were largely endogamous and had their own political organization, recreation, and ritual life. They were associated with an institution, however; most of the inhabitants had been discharged from a nearby leper asylum (Misra and Mohanty 1963).

8. Many autobiographical and life history accounts of disability are parents' narratives and document the family experience of having a disabled child. Particularly in the case of mental retardation, the point of view is almost always that of the parents (Whittemore et al.1986:2-3).

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