Cultural Anthro of Disability

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Rehabilitation Counseling Bulletin

http://rcb.sagepub.com/content/43/3/150The online version of this article can be found at:

DOI: 10.1177/003435520004300305

2000 43: 150Rehabil Couns BullDavid B. Hershenson

Toward a Cultural Anthropology of Disability and Rehabilitation

Published by:

Hammill Institute on Disabilities

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Toward a CulturalAnthropology of

Disabilityand Rehabilitation

David B. Hershenson,University of Maryland

The author reviewed both the anthropology literature and the literature of disability andrehabilitation, examining the extent to which the concepts, theories, and methods ofcultural anthropology have been applied to the conceptualization and understanding of

"disability and rehabilitation" as a cultural phenomenon. Future directions for investi-

gation are suggested, with particular reference to its application in rehabilitation coun-

seling practice and research.

he aim of this article is to survey the contributions

that cultural anthropology has madeto

the study ofJL disability (excluding psychiatric disability) and re-habilitation and to suggest some directions for further

research that might guide rehabilitation counseling prac-tice. Psychiatric disability has been omitted from this sur-

vey because it has received separate, extensive treatment

in the anthropology literature and presents a unique set ofissues (e.g., see Bock, 1999; Kleinman, 1980). This articlecontains the following:

1. an overview of the evolution of the study of

disability and rehabilitation within cultural

anthropology;2. a review of works on disability and rehabili-tation in the cultural anthropology litera-ture ;

3. a review of applications of anthropologicalconcepts, theories, and methods in the dis-

ability and rehabilitation literature; and4. some conclusions and suggestions for future

research.

To keep this review focused and manageable in size, theauthor has omitted studies in other disciplines (e.g., soci-

ology, political science, social policy) that use concepts

taken from anthropologyto examine

questionsin their

own discipline concerning disability and rehabilitationand studies by anthropologists that examine conceptsfrom other disciplines within the context of those disci-

plines (e.g., Franks [1988] test of &dquo;the theory of stigma de-

veloped by sociologist Erving Goffman&dquo; [p. 95]).

HISTORICAL BACKGROUND

The behavioral and social science disciplines-psychol-ogy, sociology, and anthropology-emerged in the mid, 19the

century.At that time, natural science, as the propellingforce in the era of industrialization in Western society, was

a highly valued intellectual enterprise. Therefore, earlyresearchers legitimized the emerging behavioral and social

disciplines by employing the same methods of empiricalresearch used by natural scientists. The dominant phi-losophical paradigm underlying natural science is posi-tivism, which states that a body of facts exists in realityand that these facts are accessible through rigorous hy-pothesis testing (Fuller, 1996). Sociology was first definedin positivist terms by Auguste Comte in approproximately

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1830. Scientific psychology is usually dated from 1879,when Wilhelm Wundt established his laboratory at Leip-zig. Somewhere between these two dates (arguably withLewis Henry Morgans publication ofLeague of the Iroquoisin 1851, but certainly with Edward Burnett Tylors publi-

cation of Primitive Culture in 1871 ), cultural anthropologyemerged as a distinct field.Anthropology consists of twoprincipal branches: physical anthropology, which is re-lated to the natural science of biology, and cultural an-thropology, which is more closely tied to the behavioralsciences of psychology and sociology. Both these brancheswere heavily influenced by the theory of evolution (theformer derived from Darwin, the latter from Spencer).

Betweeen 1958 and 1968, the U.S. Social and Reha-bilitation Service funded three successive national con-

ferences to explore how the behavioral and social sciencescould contribute to the rehabilitation effort: first, psy-

chology (Wright, 1959); then sociology (Sussman, 1965);and, finally, in 1968, anthropology (which, given the pur-poses of this conference, meant cultural anthropology;Chapple, 1970). It should be noted that anthropologistshad participated in at least one project sponsored bythe federal rehabilitation agency prior to this conference

(Field, 1967). The order of the three conferences fore-shadowed the order of subsequent contributions by thesethree disciplines to the field of rehabilitation. Not surpris-ingly, psychology, with its foci on individual behavior andtherapeutic process, has contributed the most to the prac-tice of rehabilitation. Sociology, particularly through the

burgeoning area of medical sociology, has contributed sig-nificantly, because the viewpoint that disability is sociallydefined (i.e., labeling theory) and socially determined hasgained widespread currency in the rehabilitation field.

Despite the fact that Tylor, the first acknowledged Englishanthropologist, did his initial fieldwork among the deaf in

England and Germany (the research from which was pub-lished in 1865 in Researches into the Early History of Man-kind [Bohannan & Glazer, 1988] ), cultural anthropologyscontributions to the study of disability and rehabilitationhave been the least evident of the three disciplines. Solidcontributions

bycultural

anthropologists, however,exist

and, over the past few years, have been growing in num-ber and in sophistication.

Cultural anthropologys slow start in addressing dis-

ability and rehabilitation may reflect the difficulty in

achieving agreement on the definition of three keyterms-culture, disability, and rehabilitation. In 1903,Tylor first defined the concept of culture in English (takenfrom the German kultur), equating it with civilization

(the highest stage of cultural evolution; Langness, 1987).Franz Boas, however, disputed this definition and spoke ofcultures in the plural, taking a relativistic position (i.e., all

cultures have equal merit as objects of scientific study).Boass student,A. L. Kroeber, instead saw culture as a

superorganic entity, a product of history rather than of

individual-environment interactions. Indeed, much of

the past century has been spent in disputing the definitionof &dquo;culture&dquo; (Kroeber & Kluckhohn, 1963 ), and agree-ment remains elusive.

Likewise, there is no consensus on the definitions of

&dquo;disability&dquo; and &dquo;rehabilitation&dquo; (Greenwood, 1985).Nagi ( 1965 ) defined disability as &dquo;a pattern of behaviorthat evolves in situations of long-term or continued im-

pairments [physical abnormalities] that are associatedwith functional limitations [inability to perform normalroles or activities]&dquo; (p. 103). In different cultural settings,however, the same impairment may not lead to a func-tional limitation. For example, in cultures that do not em-ploy machinery, epilepsy may be seen as a divine enablinggift (&dquo;second sight&dquo;) rather than as a potentially hazardous

disability. Furthermore, as Vega and Murphy (1990)pointed out, &dquo;The purpose of rehabilitation ... is not at

all clear. Broadly speaking, rehabilitation refers to theprocess whereby the health of a ... person is restored. Yet,health is a nebulous state. Is health the absence of illness,or the condition of optimal well-being?And what consid-erations affect how these conditions are differentiated?&dquo;

(p. 97). Despite these unresolved issues, sufficient litera-ture on the topic has been generated to warrant the re-view undertaken here.

CULTURALANTHROPOLOGY

LITERATURE

The area of cultural anthropology in which disability andrehabilitation fall is psychological anthropology. Poten-

tially relevant branches of this area include medical

anthropology, the anthropology of work and careers (be-cause of the vocational focus of rehabilitation), and the

anthropology of deviance. Looking first at the domain of

psychological anthropology (e.g., Bock, 1999; Cole, 1996;LeVine, 1982; Spindler, 1978; Williams, 1975 ), it may benoted that from the inception of both psychology and cul-tural

anthropology,there has been debate as to whether

culture is essentially all psychological (i.e., the pattern ofbehavior based on person-environment interaction),

completely independent of psychology (as proposed byA. L. Kroeber and Leslie White), the force that shapes thedomain ofpsychology (i.e., all the questions asked and an-swers provided by psychology are culture-bound), or oneof two interactive, mutually dependent phenomena alongwith psychology (cf. Bock, 1999, Table 1-1, p. 114; afterLeVine, 1982). It is of interest that Wundt ( 1916), thefather of &dquo;scientific&dquo; psychology, studied Volkerpsychologie,which he defined as &dquo;the psychological explanation of the

thought, belief, and action of primitiveman on

the basisof the facts supplied by ethnology&dquo; (p. 7). Furthermore,Durkheim (the leading French anthropologist of his day),



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Boas (the leadingAmerican anthropologist of his day),and Malinowski (a founder of British functionalism) wereall students of Wundt (Bock, 1999).As Kiefer (1977)noted, &dquo;Most ethnologists used to hope they could iden-

tify biological, ecological, and cultural laws that operated-or

that could be studied-independently of the workingsof the human mind. This hope has faded for most of us inthe last decade or two&dquo; (p. 103). Consequently, the mosttenable position (and the most productive one for the an-

thropological study of disability and rehabilitation) ap-pears to be the interaction position (the last of the fouralternatives listed previously), which is represented in the

approaches of psychocultural adaptation (e.g., Edgerton,1976) and of neo-Freudianism (e.g., Erikson, 1963). This

position views &dquo;personality as a system with its own inter-nal properties, interacting with the sociocultural systemin a relation of limited interdependence&dquo; (LeVine, 1982,

p. 97). In this position &dquo;relations between the two systemsare the major foci of empirical inquiry&dquo; (LeVine, 1982,p. 97).

It is of interest that the periodic reviews of medical

anthropology strand within this domain (e.g., Colson &Selby, 1974; Fabrega, 1972; Hahn & Kleinman, 1983;Scotch, 1963; Young, 1982) have yielded almost no refer-ences to disability. Moreover, most books on medical an-

thropology (e.g., Helman, 1994; Kleinman, 1980, 1988,1995; Loustaunau & Sobo, 1977; Rush, 1996) mention

disability only in passing, if at all. This void perhaps canbe accounted for by Steins (1979) thesis that people with

permanent disabilities and chronic illness represent a

threat to the medical model of diagnosis and cure of path-ology and hence have been a &dquo;demedicalized&dquo; (i.e., our ap-proach doesnt work on them, so they must not be amedical problem and are therefore outside the scope ofmedical anthropology). Similarly, the ethnographies thatfocus on work behavior (e.g., Lee, 1979; Richards, 1939)did not discuss disability, which in our culture has primar-ily been defined in terms of work incapacities. Perhapspeople with severe disabilities in the subsistence-level cul-tures that were the subjects of these two studies do nothave high survival rates, so an operational concept of dis-

ability would be moot (although there are doubtlessly cul-turally consensual affective responses to persons whosuccumb to this status). The anthropology of careers liter-ature (e.g., Goldschmidt, 1990; Hakken, 1993) has

yielded no greater coverage of disability and rehabilita-tion. Likewise, and perhaps most surprisingly, the anthro-pology of deviance literature (e.g., Edgerton, 1976;Erchak, 1992; Freilich, Raybeck, & Savishinsky, 1991)has had little to say about disability. However, Edgerton(1976) noted, &dquo;The most relevant issue here is not whatcauses mental retardation-or blindness, or any other

physical disability-but whysome cultures

regardit as se-

riously troublesome and others do not.About this subject,we remain almost wholly ignorant&dquo; (pp. 62-63).

On the positive side, several anthropologists haveviewed disability as a construct, most notably Estroff

(1993), Groce (1985, 1987, 1992; Groce & Zola, 1993;Scheer & Groce, 1988), and Ingstad and Whyte (1995).Schneider (1955), a medical anthropologist, wrote an ar-

ticleon

the social dynamicsof

physical disabilityin

armybasic training.Ablon (1984), also a medical anthropolo,gist, published a book on the social dimensions of dwarfism in U.S. culture. Murphy, Scheer, Murphy, and Mack

(1988) applied the concept of liminality (i.e., &dquo;caught andfixated in a passage through life that has left them sociallyambivalent and ill-defined, condemned to a kind of seclu-sion no less real than that of the initiate in the pubertyrites of many primitive societies&dquo; [p. 235]) in an ethno-

graphic study of persons with paraplegia or quadriplegialiving in the New York metropolitan community. Murphy(1990), a well-known anthropologist, also applied this

concept in his landmark participant-observer report of hisown experience with disability resulting from a spinalcord tumor. Cobb and Hamera (1986) applied Kleinmans

(1980) concept of explanatory models to two individualswith amyotrophic lateral sclerosis, or Lou Gehrigs Dis-ease. Frank (1986), also an anthropologist, applied the

phenomenological concept of &dquo;embodiment&dquo; to the life

history and views expressed by a 35-year-old woman bomwith quadrilateral limb deficiencies. Over time, the func-

tioning and self-image of this woman provided the basisfor an examination of the demands placed on personswith severe physical disabilities in contemporary U.S. cul-

ture. Vaughan (1998) presented a comparative study ofblindness in the United States,Africa, China, and Spain;Deshen (1992), an Israeli anthropologist, has written an

ethnography of blindness in Israel. Edgerton, a well-known U.S. anthropologist, has published extensively onthe adaptations made by persons with both mild and se-vere mental retardation (e.g., Edgerton, 1979, 1984, 1993;Kernan, Begab, & Edgerton, 1983). One unpublishedstudy is of sufficient significance to warrant inclusion inthis review: Weiss (1985), using data in the Human Rela-tionsArea Files, compared cultural patterns for dealingwith persons with disabilities in 47 non-Western societies

around the world. Disability-related aspects of culture thatshe examined included &dquo;infanticide, invalidicide and se-

nilicide, marriage, attention to the disabled-positive andnegative-social institutions, statuses and roles&dquo; (p. 14).

DISABILITYAND REHABILITATION

LITERATURE

To highlight the contributions of anthropology, I havetaken the

relatively simplistic tack of dividing thelit-

erature into that written by anthropologists (previouslydiscussed) and that written by others (primarily in the re-



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153

habilitation field). In reality, however, the literature formsa continuum of emphases rather than a dichotomy. Forexample, although not written by anthropologists, thererecently has been an increasing number of books pub-lished that examine the place of disability in a culture.Garland (1995), a social historian,

analyzedhow defor-

mity and disability were viewed in classical Greek andRoman cultures. Thomson (1997), a scholar of U.S. liter-

ature, presented a similar analysis of how deformity and

disability have been viewed in U.S. culture over time, pri-marily from a feminist perspective.Another scholar ofU.S. literature, Phillips (1990), found uniform patterns ofsocial interaction and self image related to disability inthe oral narratives of 33 persons with disabilities within

U.S. culture. She concluded that her findings support thethesis that reactions to disability are a cultural construct.These works contribute to the emerging area of disability

studies,which

appearsto be

followingin the tradition of

such already established fields as womens studies andAfricanAmerican studies.

Moving from studies of disability and culture per se,one finds a number of studies that examine disability andculture for its implications for rehabilitation. Using thesame database as in her previously cited study, Phillips(1985) found that definitions of success for persons withdisabilities in U.S. culture have been shifting from tradi-tional, stereotypical ones (e.g., perseverance, normaliza-tion) to more individualized, context-specific definitions.

Consequently, she concluded that rehabilitation practi-

tioners must reassess their orientation and consider mov-ing further away from the medical model and toward

greater individualization of the rehabilitation process.

Similarly, Kerr and Meyerson (1987) questioned the U.S.cultural assumption that independence is always the

preferable state and, instead, suggested that for some per-sons with disabilities in some situations, dependence or

interdependence may be better orientations. These au-thors therefore suggested that rehabilitation servicesshould assist individuals in achieving the flexibility andskill needed to comfortably enter into relationships span-ning a range of dependency, as needed for different func,

tions. Fowler and Wadsworth (1991) noted that attitudestoward people with disabilities in U.S. culture posed bar-riers to the employment of these persons. Therefore, re-habilitation personnel must promote positive perceptionsof persons with disabilities and advocate for the incor-

poration of these perceptions into the cultural values ofindividualism and equality of opportunity. Thorn, Her-shenson, and Romney (1994) used the technique of cul-tural consensus analysis to determine commonly heldcultural beliefs about the attributed causes of disabilities.

They found that, among U.S. citizens, these attributedcauses included fate or Gods will, natural or medical

causes, societally imposed barriers, and careless or recklessbehavior by the person who has a disability. Williams,

Hershenson, and Fabian (in press) found that the firstthree of these attributed causes correlated with beliefs

held by nonprofessionals as to what constituted an appro,priate rehabilitation approach.

Studies on disability and culture with implicationsfor rehabilitation have also been carried out in other cul,

tural contexts. In a study of cultural beliefs about diabetes-related visual impairments among Native Americans,Ponchillia (1993) concluded, &dquo;Although it is risky fornon-NativeAmericans to generalize about the effects oftraditional cultural beliefs and practices, particularlyamong different tribes or bands, it is unwise to ignore the

importance of these beliefs and practices to the provisionof effective services.... Sensitivity toward traditional be-liefs and perceptions can increase the chances for the suc-

cess of rehabilitation services&dquo; (p. 335). Finally, addressingthis issue in yet another cultural context, Miles (1996)concluded that Western

approachesto

disabilityservices

planning (e.g., seeing the process in terms ofhuman rightsand community-based rehabilitation) are not applicablein SouthAsian cultures. Instead, he recommended usingan informational approach based onAsian cultural valuesand local conceptions of disability.

Moving from studies of disability and culture thathave implications for rehabilitation to studies of cultureand rehabilitation, Jaques and Hershenson (1970) pro-posed that the concepts of work and deviance within a cul-ture affect the practice of rehabilitation counseling in thatculture. Percic (1986) noted that the roles, values, atti-

tudes, and norms of a culture affect client expectations,interactions, and outcomes of the rehabilitation process.Criswell (1968) stated that cultures determine the handi-

capping effects of certain disabilities and the values placedon different rehabilitation goals and processes. Banja(1996) noted that rehabilitation process and outcome areaffected by cultural effects on illness behavior, attributionof etiology, and treatment expectations. He proposed,however, that the ethics of rehabilitation (e.g., accep-tance of diversity, environmental engagement, social jus-tice) could provide a cross-culturally acceptable basis fortreatment. Szymanski and Trueba (1994) proposed that

the anthropological construct of castification ( i.e., theprocess of differential marginalization) could be usefullyapplied to the conceptualization of disability and of therehabilitation process (e.g., power differentials between

professionals and clients).There is a relatively extensive literature on reha-

bilitation programs and practices in different specificcultures, including Afghanistan (Miles, 1990), Japan(Marshall, Wilson, & Leung, 1983; Myers, 1983), andTanzania (Kisanji, 1995), as well as among Latinos (Zea,Garcia, Belgrave, & Quezeda, 1997; Zea, Quezada, & Bel-

grave, 1994), Mexican-Americans (Kunce & Vales, 1984;Smart & Smart, 1991, 1993), Navajo (Lowrey, 1983), andPacific Islanders (Fitzgerald & Anderson, 1992) in the



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United States. Strauss (1985) compared two multiculturalsocieties-those of Israel and Nigeria-and their cultures

regarding attitudes toward birth defects, rehabilitation,and community participation. He concluded that culture

is an important variable in cleft lip and palate research.Several studies have

comparedthe attitudes of reha-

bilitation practitioners across different cultures. Jordanand Friesen (1968) compared the attitudes toward peoplewith disabilities and the interpersonal values of rehabili-tation personnel (primarily occupational and physicaltherapists) in the United States, Colombia, and Peru(characterized by the authors as modem, transitional, andtraditional cultures, respectively). The U.S. personnelscored most positively on theAttitudes Toward DisabledPersons (ATDP; Yuker, Block, & Campbell, 1960) scale,as predicted, but predictions concerning interpersonalvalues were not confirmed, although the groups differed

significantlyfrom each other.

Althoughthe authors re-

late the U.S. samples positive score on theATDP to theUnited States being the most modem culture, it must benoted that the U.S. sample was older and had more educa-tion than the other two samples-factors that also couldhave accounted for the differences. Westbrook, Nord-

holm, and McGee (1984) compared Swedish andAus-tralian female occupational and physical therapists andnurses on their reactions to case histories of six individu-

als with accompanying interview transcripts.Australianswere more likely to see the individuals as dependent, de-

pressed, and poorly adjusted; to respond verbally to their

feelings; and to recommend counseling. Swedeswere

more likely to react with specific treatments and techni-cal aids and to see dependent individuals as having poorerprognoses. Conversely, Cope, Kunce, and Buchanan (1973)examined counselors views of clients from two different

U.S. subcultures. Taking a &dquo;culture of poverty&dquo; approach,the authors asked 183 rehabilitation counselors to rate 36

behavioral statements as to whether they were more char-acteristic of individuals from poverty backgrounds or frommiddle class backgrounds, or were equally characteristic ofboth. Of the items, 14 were seen as more characteristic

of persons from the culture of poverty (e.g., &dquo;Lacks per-sistence in following through on goals&dquo; [p. 164]), and16 were seen as more descriptive of persons from middleclass culture (e.g., &dquo;Has good sense of self-direction&dquo;

[p. 165]). The respondents indicated that they believedthat differences between the two cultural groups existed

in the areas of health, language styles, work skills, and psy-chological characteristics. Such pervasive perceiveddifferences may affect the respondents delivery of reha-bilitation services to the two groups.

Several studies have also addressed the place of cul-ture in rehabilitation counselor education. Rubin, Pusch,Fogarty, and McGinn (1995) identified needs and edu-

cational priorities for enhancing the cultural sensitivityof rehabilitation counselors. Medina, Marshall, and Fried

(1988) recommended incorporating knowledge of Chicanoculture into rehabilitation counselor education programs.Hershenson ( 1989 ) compared rehabilitation counselor edu-cation inAustralia and the United States.

Finally, several studies have used ethnographic re-search methods to explore rehabilitation process issues.

Spencer, Young, Rintala, and Bates ( 1995 ) conducted an

ethnographic study of a patients socialization to theculture of a rehabilitation hospital. The patient was a

30-year-old man with spinal cord injury who was inter-viewed daily throughout his 116 days of hospitalization.Likewise, Hill ( 1978) used participant observation and in-tensive interviewing to examine the different perceptionsof clients and staff on two different units (physical re-habilitation and nephrology) conceming the rehabilita-tion process. She concluded that, &dquo;Anthropology ... canmake a contribution, both conceptually and practically, asrehabilitation moves

awayfrom

fragmentationand com-

partmentalization and toward a more comprehensive ap-proach to social intervention and client care&dquo; (p. 62).

CONCLUSIONS

Chapple ( 1970) summarized the conclusions of the 1968

federally sponsored conference, mentioned previously, re-

garding what anthropologists could contribute to rehabil-itation. Potentially useful anthropological approaches tothe study of disability generated by the conferees included

the suggestion that traditional ethnographic observationsof time spent on an activity, sequencing of activities, spa-tial layout and movement patterns, interactions with oth-

ers, technology used, and communication patterns couldbe applied to persons with disabilities to establish theircultural context.Among issues that could be addressedfrom an anthropological approach are how culture defines

disability and how culture promotes the acceptance of dis-abled status (e.g., by fostering dependency, segregatingthose with disabilities, promoting differential life cyclepattems, restricting participation in productive activity).

The conferees further suggested that the culture of

rehabilitation programs could also be profitably studiedusing anthropological methods. Topics that could beviewed ethnographically included the sequencing of therehabilitation process, cultural disparities between clientand rehabilitation professional, values held by rehabilita-tion professionals, the use of paraprofessionals to meetstaffing needs, institutional barriers to effective rehabilita-

tion, and communication pattems within rehabilitation

agencies. Finally, the conferees proposed that insightsfrom anthropology could be applied in effecting and eval-

uating cultural and institutional innovations in the reha-

bilitation community and in its broader cultural context.

Clearly, 30 years later, not all of these topics have beenadequately addressed.



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156

the anthropology of disability (client) and rehabilitation

(profession). If the topic of disability and rehabilitation

gains recognition as a distinct area of cultural anthropol-ogy, and if it generates the types of research suggestedhere, the beneficial effects on rehabilitation counseling

practiceand research should be

significant.

ABOUT THEAUTHOR

David B. Hershenson, PhD, is a professor and director ofthe Counselor Education Doctoral Program in the Departmentof Counseling and Personnel Services, College of Education,University ofMaryland.Address: David B. Hershenson, De-

partment of Counseling and Personnel Services, Collage ofEducation, University of Maryland, College Park, MD20742; e-mail: dh2l~umail.umd.edu

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