DOCUMT RESUME

ED 343 314 EC 300 993

AUTHOR Woods, Diane E., Ed.

TITLE The Potential for U.S.-Asia Research Collaboration:Two Examples.

INSTITUTION New Hampshire Univ., Durham. Inst. on Disability.;

World Rehabilitation Fund, Inc., New York, NY.

SPONS AGENCY National Inst. on Disability and RehabilitationResearch (ED/OSERS), Washington, DC.

PUB DATE 91

NOTE 14p.; Special issue in the series "The ChangingNature of Disability and Disability AwarenessWorldwide." A publication of the InternationalExchange of Experts and Information inRehabilitation.

PUB TYPE Collected Wot - Serials (022) -- Reports -

Descriptive (141)JOURNAL CIT IEEIR Interchange; Nov-Dec 1991

EDRS PRICE MF01/PC01 Plus Postage.

DESCRIPTORS Attitudes; Check Lists; Child Development; CommunityPrograms; *Cooperation; Cultural Differences;*CUltural Influences; *Developing NationsDisabilities; Ethnography; Foreign Countries;Information Dissemination; *Mental Retardation;Qualitative Research; Rehaoilitation; *ResearchNeeds; Surveys

IDENTIFIERS *Indonesia; *Pakistan

ABSTRACTTwo articles sxplore possibilities for collaboration

between American and Asian researchers addressing disabilities in a

worldwide context. The first artic1_, by Mike Miles, is titled "Using

Action-Oriented Disability Studies in Pakistan." It focuses on how

information can be disseminated in informal, nontraditional(non-Western) ways. Action research is seen to offer relevancy to the

needs of people with disabilities and professionals in developing

nations such as Pakistan. Brief synopses of seven field studies in

Pakistan are given, concerning mental handicap in the family, a

survey of disabled children, development of a Child Developmental

Skills Checklist, a survey of attitudes toward disability, a study of

causal integration, community-directed rehabilitation, trends in

polio paralysis, and ongoing information studies. This paper includes

12 references. The second article, by Judy Kuglemass and Kusdwiartri

Setiono, is titled, "Developing Mutual Understanding between Western

and Non-Western Cultures through Collaborative Research." It is based

on a qualitative ethnographic study of Indonesian families withmentally disabled children, and stresses the importance of cross

cultural collaboration of researchers. (DS)

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UNIVERSITY OF NEW HAMPSHIRE NOVEMBER.DECEM1ER 1991

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UNIVERSITY OF NEW HAMPSHIRE NOVEMIER-DECEMBER 1991

Special issue in the serieeThe Changing Nature ofDisability and Disability Awareness Worldwide°

The Potential for U. S. - Asia Research Collaboration:Two Examples

This issue of INTERCHANGE is dedicated to exploring research and research possibilities in two Asian countries:

Pakistan and Indonesia. This is intended to be an "installment" in a series dedicated to the theme: "The Changing

Nature of Disability and Disability Awareness Worldwide."The Miles article discusses several specific practical research projects that have been carried out in Pakistan. It is

a shorter version of a paper published in 1991 in the International Journal of Rehabilitation Reseant 14 (1) 25-35. Heespecially pays attention to how the data can be disseminated in informal, non-traditional (in Western terms) ways. Miles,who spent nearly two decades living in Pakistan and working in the field of mental retardation, points out in the articlethat appears in this issue that "much basic, necessary research in special education and rehabilitation has been reported inthe West. and is open for study in the Third World, yet it may lack impact on Government policy-making by not seeming

relevant or by being ?wed in unfamiliar conceptual terms." He goes on to describe research that has been done inPakistan and shows how "action-research" provides a relevancy to the needs of people with disabilities and professionals

in Pakistan.The Kugelmass-Setiono piece explores the relationship between Western and non-Western researchers and how

collaboration can be developed in a sensitive and productive way. hugelmass earned out a fellowship through the iEEIR

in 1989 and her host/sponsor was Setiono, an Indonesian professor of Special Education. The two have continued towork collaboratively. They did a presentation at the 1991 Society for Disabilities Studies titled " The Integration ofWestern and Traditional Approaches to Disability Awareness and the Development of Culturally Appropriate Treatment

Strategies." The article appe-sing in this issue of 1ATERCHANGE is a further development of that presentation.Both articles provide the reader a ith a sense of the possibilities for cross-cultural, cross-national research and the

development and promotion of disability awareness when close attention is paid to cultural needs and opportunities incollaborative endeavors. We would like to invite readers with relevant networks to propose, through the IEEIR fellow-ship program. studies which build on both themes presented in these two articles. The Editor

, I

Using Action-OrientedDisability Studies in Pakistan

Mike Miles

Introduction...Studies, at whatever level, arx, of little use if they?main inaccessible, but in Pakistan, the write-upand distribution ((studies and materials in ibisfield is generally weak. Aiming to do better, theMHC undertook studies that shouki be comprehen-sible to partieqratus and potential readers ...Theidea of disseminating information, i.e. givingaway pou er. is strange. It is then arreabk to findonest.:, on the mailing list for regular. free infor-

(rontinued on p.2)

Developing Mutual Understanding Between

Western and Non-Western Cultures Through

Collaborative 7esearchJudy Kuglemass & Kusdwiartri Setiono

During the summer of 1989, through the support of a fellowshipfrom the World Rehabilitation Fund. Dr. Judy Kugelmass investi-gated the relationship that exists between culture and familyadaptation to disability in Bandung, Indonesia. Through in-depthinterviews of fourteen families with children identified as"mentallyhandicapped" and participant observation in their homes, schools.and communities, this project hoped to inform rehabilitationpractitioners about the significance of cultural considerations whenworking with children and families in the United States.

( continued on p. 8 )

3

The MHC-

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part of a

developmentrixivthnen4 to

see what was

happening and

what should be

done nect, tO

identifyInvisible

resourcee; to

facilitate policydevelopment

and to model apattern of study

with monitoredfollow-up

&

(continued from p. 1)

mation that is relevant to oneS work and is notintended to pmmote any equgiment, dnig,religion orpolitical party......The difficulties of conducting rigorousresearrh should not be allowed t o preventuseful engagements in a secondary Mei ofstudy. Also mucb needed are the culturaladaptation, tninslation and wicier dissemina-tion of evisting know-how. including indig-enous practica and tbe experience ofpeoplewith disabilities. and augmenting the resourcesof junior professional workers who are often thesole, inadequately supported, interface Writtenmodem knowledge and the general public.

BACKGROUND

Special educafion and rehabilitation inPakistan are in their early stages. hut ex-panded appreciably after Gmernment initia-tives in 1985. Services are largely urban.institutional and focussed on children.Pakistan's population is 115 million (1991), ofwhom about 55 million are aged under 15Some 27 million are getting education. but lessthan 15,000 have special needs specificallycatered for. At least 250.000 children withsignificant disabilities are 'casually' integratedin ordinary schools. Urban hospitals providesome ear, eye and orthopedic surgery andrehabilitative aftercare for all age-groups. Somevocational rehabilitation is being attempted.

Little formal research has been done inspecial education and rehabilitation, and evenless published. Postgraduate courses beganrecently at the National Institute of SpecialEducation, Islamabad. the Education Depart-ment of Karachi University and Allama IqbalOpen University, Islamabad. The NationalInstitute of Psychology, Islamabad. publishessome basic work in child psychology andassessment. Studies in pediatrics, orthopedicsand psychiatry with peripheral hearing onrehabilitation have been published in repu-table fournals such as J. Pakistan MedicalAssociation. Pakistan Pediatric J. Pakistan J.Psychological Research and in conferenceproceedings.

2

AIMS AND METHODS

Since 1978, Pakistani and expatriate staff ofthe Mental Health Centre (MHC) at Peshawarhave engaged in several low-cust disabilitystudies and made a sustained effort to dissemi-nate the results and reflections widely. Earlierstudies counted heads and dipped buckets toget an idea of 'what Ls there', to compare noteswith other people's obsemtions arid to reportto anyone who was interested. These studiesadvanced beyond a purely anecdotal level ofevidence. Later studies involved more literaturereview and theoretical framework, but fell shortof testing hypotheses with pre-validatedinstruments.

By Western standards, the feasibility ofscientific rehabilitation studies in Pakistanappears small. Methodological rigour hardlyseems appropriate, in the absence of elemen-tary baseline data, of assistants with anyresearch training, and of access to updatedreference libraries or databases. What takesplace in this situation has the nature of field-work and pilot study. However, the situationencourages innovation and unorthodox ap-proaches, and the fields are not uncharted.Despite cultural differences. Western experi-ence has some relevance.

Methodology should be within the research-ers' operating capacity and likely to producemeaningful results. The MHC studies took placenot to obtain an individual doctorate, nor tosecure salaries for a research team, nor toprove the superiority of any particular theory,technique or ideology, nor to gather evidenceto attack Government policy, nor merely tosatisfy curiosity. They were done as pan of adevelopment movement, to see what washappening and what should be done next, toidentify 'invisible resources', to facilitate policydevelopment and model a pattern of studywith monitored bllow-up. (It would, of course.he idle to deny any thought of personalbenefit. Most social researchers hope todistinguish themselves by contributing originalperspectives and to see their work used for theuplift of the masses.)

With very modest finance and academicresources, the WIC intended that its studiesshould inriease access to good-quality informa-tion and bhould be open-ended to promotestudy and circulation of information. By formalresearch standatds, the earlier studies weremessy and semi-scientific. Quantitative resultswere few, but nca all predictable. Well-con-Polled modem social research is neither easynor perhaps even apixopriate where there arevery few organized sysems to observe, wherepublic thought appears to be largely pre-scientific and where demographic data ismostly guesswork. Rigorous research takesplace in a different conceptual wcdd to that ofthe Government junior planner or educationdirector. It would normally fail to conveyanything either intelligible or that might affect

practice.

BRIEF SYNOPSES OF FIELD STUDIES

Minialitandicagiaikaandis InPeshawar in 1978, the concept of mintrital

handicap' was familiar to only a few pediatri-cians, and then only in medic.21 terms. Thewwas no family guidance literature in locallanguages. There were three schools formentally handicapped children in Karachi and

arm each in Lahore. Rawalpindi and Peshawar,run by voluntary agencies. Estimating that theremust be at least 500 children with severemental handicap among Peshawar's 300.000population. TX staff spent two weeks seekingsome of these children through local infor-mants and follow-up of old contacts. Staffaimed also to discover the attitudes of familiestowards their handicapped child, and topublicize MHC services. They found 20 men-

tally handicapped children, half of whom hadadditional serious disabilitkm.

A report on the children. families, awareness ofmental handicap. attitudes and availability ofinformation. was 7Y-Ailed to 100 psychiatrists.

social workers, pediatricians, psychologists andspecial school managers already known to MHC

staff. A medical newspaper published a digest ofthe report and an Indian journal published ex-tracts. Many of the Pakistani readers had alreadyreceived issues of a MHC newsletter about mentalhandicap and a MHC English-language 1...'sice

pamphlet for families. This basic study usedPakistani staff in discoveryand rerorting, and was

educative to them, to the families whom theyfound and also counselled, to the report writerandreader. It was not 'participatory research' in thesense of empowering families to re-evaluate andchange their own workL Yet it was participatoty inthat Pakistanis at various professional and non-professional levels learned about mental handicapin their own society, and were able to reflect uponand communicate their discoveries to other inter-ested people.

SaraimAtillieldedsMidnut The nextstudy (1980) involved colkge students doing anobligatory 'social work' project. Several hundredstudents were briefed to survey 40,000 urbanand rural households. They located 1.536children or young people with disabilities andasked about their lives, needs and hopes. Thecosts were around US $200.' for printing formsand mailing a detailed report to 200 concernedpeople in Pakistan and abroad. A digest waspresented at an Asian disability congress. Oneof this study's aims NVZ.5 to substitute names anddetails for statistical guesswork. During IYDP.

the Government had wanted to "do somethingfor the people with disabilities" but did notknow where to begin. The MHC study pro-duced detailed information on the situation ofmany disabled children. and offered low-cost,feasible recommenc tions. Some of the collegeswith students who carried out the surney didfurther studies, and the students learned some-thing of the social realities of having a disability.

Giving study results to the Government wasnot difficult. The Provincial Education Secretary,who authorized student involvement, was keento see the report. The Social Welfare Directoratewanted detailed results to help design IYDPprograms. The report was mailed to dozens ofFederal Government officials listed in the phonebook. In a largely pm-literate society whereinformation media are closely supervised, freehand-out of a genuine fact-finding study is rare.The report reached Government at a time whenit was interested in diuhility and needed facts.

3

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arVarian42t*

firoi4s'sisinal

leamed*about

in

trigrown society,

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communicatetheir

discoveries toother

interestedpeople.

CididDriskilmailkans-ateggiaNeeding apptopriate developmanal cheddistsfor use in special schools, family counsellingand Imre educatkm, the WIC staff metweekly to revise Eurcpean material. Posturalexperiences of child-mising wete pooled withFofessional observation of pupils in theclassroom Non-teaching tuff to& part, e.g. adrive: with a large family in his PakImmvillage south ci Peshawar, a physiotherapyassist:um raising six children in another villageand, a classroom assistant who raised kwchildren in a taint:aides slum. Broad staffpanicipation made the outcom mat mean-ingful for families from many backwounds andculuual raaices. The teachers gained confi-dence to make further periodic revisicau,when they realized that the cheddists werenot simply given 'from above' but viceactually based on experience. A revised Urduversion has been widely used in specialschools and a second revision was publishedin 1991.

4fZftjftjçsjowqrdi 1Xcabil4y lo 1981, theNational Council of Social Welfare, Govern-ment of Pakistan, gave the MHC $3,000 to -do

some reseasch on dilabilitr. The first spon-sored study surveyed public knowledge andattitudes toward disability, and enquiredwhether media coverage of IYDP (1981) WASat4e to be recalled a few months later, bystructured interviews with 286 urban and ruralpeople. The report (Miles, 1983) also reviewedthe largely anecdotal literature on African and

Asian attiludes towards disabled people. Thereport appended extensive quotations tofacilitate further work, and outlined possiblecollege-level studies. The MHC printed anddisuibuted 500 copies internationally to peopleand organizations actively concerned withThird World disability, The report was added

to the Librazy of Congress and ERIC. Digestswere read at national conferences. The reportis used as a textbook in several Europeanuniversities and more recently Pakistan. Alater reprint of 500 copies was financed byNOVIB and UNICEF.

Pakistan's Minister for Information, receivingthe repon. instructed the Peshawar television

station to do a program on the cock which VMSshown nationwide at prime time. Radio scriptson disability and basic rehabilitation, Writtell atthe MHC in 1984 after the ankraies report, havebeen bloadcast in at leas ten languages andused in training Afghan health woikers. Afterfive yeas' delay, the Government inplementedtwo of the repeat's three main tecommenda-tions, Le. to hold a national wcakshop onattitudes, disability and media (Koludd et al,1990) and to plan a national disability informa-tion centre.

*CassellitatitnRS A second Council-sponswed study investigated children withdisabilities in ordinary school& Teachers in 103primary and secondary schools of the NorthWest Frontier were asked if any of their pupilswere disabled. From 43,416 enrolled pupils,825 (1.9%) were reported. Disability WUverified by the investigator. Tbe pupils wereinterviewed about how they got along inschool. An interim report was circulated and aSociety for Integrated Education of Handi-capped Children was formed which employedsocial workers to follow up these pupils and toinvolve more schools in practical integration.

Education officials trying toextend special education were

merely confused by the idea that

thousands of disabled children

were already casually

mainstreamed. Six years later,

official interest in educationalintegration has begun to pick up.

Five hundred copies of the final report (Miles,1985a) were trailed to a growing list of interestedparties. The report, discussing many aspects ofeducational integration and practical classroomstrategies, is in the ERIC database. An Argentine

to

parents society asked to translate it into Spanish.Digests of the study were read at conferences ant'appeared in an African iournal. Oxfam sponsoreda reprint of 400 copies. A UNESCO consultantused the study at a workshop in Ecuador. in 1988.UNICEF sponsored 500 more reprints for inservicetraining of primary teachers in Sind Piovince.Several university courses use the report as a settext or recommended reading. However, theeffect on the Government of Pakistan was mini-mal at the time. Education officials trying toextend special education were merely confusedby the idea that thousands of disabled childrenwere already casually mainstreamed. Six yearslater, official interest in educational integrationhas begun to pick up.

Cimintanity_DitechallkitakilltafkaVarious community rehabilitation strategieswere field-tested in developing countries in the1980s. The MHC was the resource base forcommunity mobilization, planning and trainingstaff for new centres nm by autonomous localassociations in ten towns within 200 miles ofPeshawar between 1979 and 1987. Four specialschools were started and are still working, andnine physiotherapy centres, of which sixcontinue. All the other MHC study topicscontributed to this ongoing mobilizationexercise and were in turn field-tested orexercised in these locations. The experiencegained has been reported in several publica-tions e.g. Peters & Rehman. 1989: Miles.1990a).

Erendlin_82fifLozfralysis, The high profileof post-polio paralysis at the MHC physio-therapy clinic, despite immunization cam-paigns. led to the comparative study of data onpolio and cerebral palsy from six institutions inPakistan and India (Miles. 1989a & forthcom-ing). The relatively constant incidence ofcerebral palsy gave a surrogate indication ofclinic utilization, enabling the interprevaion ofclinic polio data in temis of trends. Centres atQuetta. Lahore. Kohat. Mingora and Calcuttapooled data annually, coordinated by the MM.This sort of 'district reporting' and 'sentinelsurveillance' is a key pan of the World Health

Organization strategies for the global eradica-tion of polio.

QnSaingiv kringslunitnatio. Other MHCstudies of low-cost vocational rehabilitation, de-velopment issues for mental handicap associa-

religious resources for attitude change,ratsfer of cerebral palsy handling skills (Miles &Frizzell. 1990), have been circulated in similarways or are in progress. Arising with this formaland informal dissemination, was a growingawareness fiat information is vital to policy andservice development in "Third World rehabiEta-tion" (Miles, 1985b p.38-47; 1989b, 1990b.). Theseitudies were ancillary to the main work of theMHC, which was to provide special education,counselling and physiotherapy, to publish relevantliterature and to act as a resource and training basefor rehabilitation development.

DISSEMINATION METHODS

Studies, at whatever level, are of little use ifthey remain inaccessible, but in Pakian thewrite-up and distribution of studies and materi-als in this field is generally weak. Aiming to dobetter. the MFIC undertook studies that shouldbe comprehensible to participants and potentialreaders, and hopefully also interesting. Thisrequired that MHC staff should already heactive in practical service and policy develop-ment and that study recommendations shouldbe feasible and attractive. There was earlyplanning of how the study results would becommunicated, to whom, in what quantity, andto what end. This communication aim was partof a process. Many recipients of study reportswere already getting WIC newsletters andcounselling materials and meeting MHC staff atnational conferences. Some credibility hadaccmed.

We began with infonml pni.t publication.Our presentation was poor. e.g. cyclo-styledfoolscap with 750 words per page to reducscosts. Complaints from Westerners led to somemodifications, and word-processors reachedPeshawar in the mid-1980s, facilitating pagedesign. if readers expect worthwhile contentsthey may tolerate poor appearance in docu-ments from Pakistan. However, the MHCslowly improved presentation, without incur-

5

entext.

id Worldnigabilitation°

46,61..;

thZ"irle'fibril the

West arit :thus

assured of

many extra

copies

ring heavy costs. Western professionalsstruggle with too much infonnation, sounsolicited mailed reports may not be wel-come. Sy contrast. infonnation sources are fewin Pakistan and many other countries. Theidea of disseminating information, i.e. givingaway power, is strange. It is then agreeable tofind oneself on the mailing list for regular, freeinformation that is relevant to one's work andis not intended to promote any equipment,drug, religion or political party.

FORMAL PUBLICATION

Formal publication could be either in bookform or by academic journal. However, bookpublication is ruled not by the needs of therehabilitation field but by market forces. Thedelays of fonnal publication would also makethe studies less useful as catalysts for change.Therefore, the MHC poky has first been forfree, informal distribution, aided by grantsfrom NOVIB, Oxfam. UNICEF and Chrisfro7r, .1Blindenmission. Not-for-profit publicatit,..now being considered. using desktop publish-ing software to control costs up to camera-ready manuscript.

Professional rehabilitation immals do notexist in Pakistan. Some low-circulationnewssheets and semi-popular journals havepublished digests of MHC studies. They tendto carry papers that would not he accepted bypeer-reviewed international journals. For thesake of one's career. Third World professionalstry for publication in reputable jovrnals, whichare affordable by only a few university librar-ies. If successful, their work leaves the countryand little returns. Journals of their Own countryget digests and lett-overs. However, urbanPakistan abounds in cheap photocopiers;books and journals that arrive from the Westare thus assured of many extra copies. Inrecent years, library services circulatingacademic .current contents' have also im-proved, with central copying of papersrequested by subscribers.

MULTI-LEVEL APPROACH

In Pakistan there is a shortage of training andexperience for carrying out good qualityresearch. of finance to pay for and disseminateit and of people with the time to read it. andacumen to grasp its importance, or the politi-cal clout to take action. Downmarket. at the

6

level of the MI-IC work, bright people are stillneeded to do useful studies and to appreciatethe results, but formal training is not obliga-toty. There are more participants, lower costs,greater accessibility, mote immediate applica-tion. Admittedly, there is also more risk thatflawed conclusions may be drawn and preiu-dices reinforced rather than challenged. At thepopular level, people do learn by experiencebut lack critical and comparative faculties andhave limited information horizons.

The gap between the academic and thepopular worlds, in the social sciences, may belargely one of language and concept. Academ-ics can use popular language when theychoose, e.g. when talking to their children.The highly specific and differentiated iargon ofacademic discourse is justifiable as a time-saving device, though often used merely formystification. A median between popular andacademic discourse can often be found, withsome effort of drafting and re-drafting. Ifacademitm believe that the ordinary tax-payershould finance their research through Govern-ment grants, there is perhaps some responsibil-ity to communicate the results in terms acces-sible to the public.

There is not yet an academic jargon of specialeducation and rehabilitation in Pakistan, butthe language of educated people (English) isinaccessible to the masses. The MHC thereforepublished the first Urdu-language manuals oneducation of children with mental handicap (atranslation of English material written inPakistan), visual or hearing impairment(translations of material written by Europeanswith Third-World experience) and on basicphysiotherapy (some original Urdu materialand some translated Western material), makingthis knowledge available to Pakistanis withsecondary-school literacy. This exercise hasbegun preparing readers who should be ableto understand the language and concepts ofspecial education and rehabilitation studieswhen such studies become available in Urdu.

IN CONCLUSION

Much basic, necessary research in specialeducation and rehabilitation has been reportedin the West, and is open for study in the ThirdWorld. Yet it may lack impact'on Governmentpolicy-making by not seeming relevant or bybeing reponed in unfamiliar conceptual terms.

Many Third World Governments are making the same mistakes as Western Governments of 30 or 50 years ago. Alterna-

tively, these may be seen not as mistakes but as service provisions congruent with the peseta stag? of attitudinal, educa-

tional and economic development (Miles, 1989c). Access to Western knowledge may speed the evolution of attitudes and

service provisions, blocking blind alleys and spending less time on detours if the exposure to this knowledge is managed

in a way that makes it credible and attractive.

To make the available knowledge intelligible, interesting and relevant to generalist planners and mid-level professionals, in

Pakistan or elsewhere, it may be contextualised in action-oriented studies, mini-surveys and reported observations. Reports

can be disseminated by direct mail, semi-professional journals and other media. The difficulties of conducting rigorous

research should not be allowed to prevent useful engagements in a F -ondary.level of study. Mso much needed are the

cultural adaptation, translation and wider dissemination of existing iu....esv-how, including indigenous practices and the

experience of people with disabilities, and augmenting the resources of junior professioml workers who are ofter iNe sole,

inadequately supported, interface between modern knowledge and the general public.

References

Jeer, R. (1989) Modifying attituzies towardspersons with mental handicap through audio-visual methods. Paper presented to the SeventhConference of Pakistan Psychological Associa-tion, Lahore.

Kolucki, B., Matthaei K., & Duncan B. (1990) AHandbook on "How to improve our communi-cations about people with disabilities." Reportedfrom a UNICEF/Govemment of PakistanWorkshop on "Media and Peoplewith Disabilities", Islamabad: UNICEF.

Miles, M. (1083) Attitudes towards persons withdisavilities following IYDN 7981). With sugges-tions for promoting pasitke changes.Peshawar:Mental Health Centre. ERIC ED 2368*?.6 Lib.Cong. P-E-84-931173.

Miles, M. (1985a) Childnm with disabilities inordinary schools. An action study of non-designed educational integration in Pakistan.Peshawar:Mental Health Centre. ERIC ED 265711.

Miles. M. (1985b) 'nen. Them Is No RehabPlan. Peshawar: Mental Health Centre. Reprint,

Palo Alto: Hesperian Foundation. ERIC ED 267

530.

Miles, M. (1989a) Monitoring Polio Trends from..wsiotherapy Records Dopical Doctor, 19 (1)

3-5.

Miles, M. (1989b) Information Based Reha-bilitation for Third World Disability. SocialScience & Medicine, 28 (3), 207-210.

Miles, M. (1989c) Rehabilitation Develop-ment in South West ksia: Conflicts andPotentials. In L Barton (Ed) Disability andDgoendency, pp.110426. London: PalmerPress.

Miles, M. (1990a) A resource centre develop-ing information based rehabilitation. InM.Thorbum & K. Marfo (Eds.) PracticalApfnoaches to Childhood Disability inDeveloping Countries.. insights firm Experi-ence and Researrh. pp.261-276.St John's,Canada: Project SEREDEC, MemorialUniversity of Newfoundland.

Miles. M. (1990b) Disability and Afghanreconstruction: some policy issues. Disabil-ity, Handicap & Society 5 (3) 257-267.

Miles, M. & Frizzell Y. (1990) Handling thecerebral palsied child: multi-level skillstransfer in Pakistan. PhJsiotherapy, 76 (3),

183-186.

Peters. H. & Rehman. F. (1989) CommuniiyDireaed Rehabilitation in the North WestFrontier Province of Pakistan. Peshawar:Mental Health Centre.

BEST COPY AVAILABLE

?

At.

and Dr. *tiono

subsequentconsultationand shared'

refleCtiOnS.

tesearc ers;

came to adeeper

understandingof the

iinplicatiöns ofthese findings

Kugelmass & Setiono

( continued flum p.

As s often the case in qualitative/ethnographic research. particularly when aninvestigator enters a society quite different fromher own, this rrsearcher learned a good dealmore than that which was anticipated. Ofparticular significance were the implicationsthat emerged for applied researchers inrehabilitation or other human service endeav-ors in economically underdeveloped, non-western societies.

The findings of Dr. Kugelmass reportto the World Rehabilitation Fund focused onthe existence of an indigenous system ofcaring that provided children with environ-ments that maximized their hinctioning whileproviding support to their families. Althoughthe formal educational and medical systemsprovided many services to the families inter-viewed, these were not perceived by parentsas psychologically supportive. Instead.emotional as well as material support cameprimarily from extended family and localcommunity networks and a belief system thatfocused on the importance of acceptance andpatience that comes out of the religious beliefsand culture found in western Java. Although itwas clear that the families intervittwed werenot representative of all Indonesian families oreven of al; families in Bandung that hadchildren identified as mentally handicapptd."their ability to adapt successfully was seen as afunction of their reliance on both formal andinformal support systems.

These families did not. howeverrecognize the significance of their religiousand cultural traditions in their adaptations totheir child. Parents and professionals consis-tently articulated their need for Westerninstitutions and technology in order to moreadequately meet the needs of their children.There was no apparent recognition that themost efiectwe teaching and parenting strate-gies minuted culturally appropriate interac-tions and the spiritual beliefs on which theywere based. Dr. Kugelmass concluded thatthis lack of awareness was limiting opportuni-ties for optimal and inexpensive treatment andeducation within the existing cultural context,The reliance on technological solutions tohuman problems that characterizes Westernmedicine and the looking towards the West forsolutions by economically underdeveloped

8

countries was p)inted to as one SOLITLY! of thisdilemma. The report advised American andIndonesian professionals to adopt an ecologicalframework in order to discover the strengthsand sources of support that exist within theirown societies. communities, and families whendeveloping service plans for children withdisabilities.

The dichotomy that exists in the

attitudes many Indonesians hold

towards Western versus

traditional values and institutionsmust be considered whenoffering 'interpretations to appliedresearch and in offering

su estions for service-deliverymodels.

Dr. Kusdwiartri Setiono. Professor ofDevelopmental Psychology and Dean of theFaculty of Psychology at the PadiadjaranUniversity was a primary collaborator for thisproievt. Although both Dr. Kugelnuss and Dr.Setiono met frequently in Indonesia. it wasonly through subsequent consultation andshared reflections in preparation for thepresentation at the national conference of tlw-Sodety for Disability Studies" in Oakland.California in July, 1991 that both researcherscame to i; deeper understanding of the miplica-tions of these findings. Dr. Setiono wasappreciative of the insights that Dr. Kugelmass'research offered into developing culturallyappropriate and affordable special educationand rehabilitation services in Indonesia.However, she felt that the conclusions of theresearch did not take other realities that exist inher country into account.

There was no disageement that aphilosophy of life basic to Indonesia is one ofacceptance. demonstrated in the patience andwarmth that characterizes the interactionshetween paroles and children. Certainly, thesocial and emotional development of most

)0

children is enhanced through this kind of care.However, as Dr. Setiono pohaed out, accep-tance is not a wholly positive characteristic,either for Indonesian society or for childrenwith disabilities. The religious origins of thisphilosophy are romed in the belief that accep-lance is a demonstration of faith that all realitycomes from God and is to be faced withpatience and understanding. It is also a beliefsystem reinforced by the long colonial historyof Indonesia.

Dr. Setiono believes that in order toachieve economic progress, Indonesians n-edto modify their belief system and become moreactive in shaping their own destiny. Similarly,acceptance can have a negative aspect whenexE ggerated by parents of children with orwithout disabilities. Examples of negativedemonstrations of acceptance cited by Dr.

Setiono and observed by Dr. Kugelmass inIndonesian parents of children with disabilitiesinclude giving the child whatever he or shewants; not limiting behavioral excesses; failing

to systematically instruct the child in newbehaviors or skills; not seeking outside, profes-sional assistance.

Although the parents in Dr. Kugelmassstudy represented a wide range of social classand educational backgrounds, none were from

among the poorest in Indonesian society, andall had some degree of education. All th&

parents interviewed had sought help for theirchild from both "traditional," i.e indigenous,and modem. i.e., Western based, services. Dr.

Setiono believes that this demonstrated theimportance of and possibility for modificationof the philosophy of acceptance to includeseeking help for your situation from those thatexist around you. Such modification has comeabout through education and parents' under-standing of the nature of disability. Among leSS

educated people, particularly those in rural

3reas with limited access to outside informa-tion, the response to having a child with adisability is often quite different. Frequently,one of two extremes are seen: I. The child isperceived as evidence of God's blessing and isresponded to by treating the child as anhonorable or saintly person. 2. The child'sexistence or disability is denied and he/she iskept hidden from extended family, friends, andneighbors, or unrealistic expectations/demandsare placed on the child.

Another aspect of the research findings

expanded upon through collaboration was thenature of the role of professionals in providingservices to families with disabled children.Certainly there will never be enough doctors,psychologists, therapists, and teachers to meetall the needs of families in either Indonesia orthe United States. Many Western countries areaddressing this reality through a movementtoward tri- s'...nent teams that include parapro-fessional:, arid parents. Self-help groups andthe empowerment of "consumers" is anotheraspect of that movement. Although such anapproach appears to be one that would meetmany of the needs of a country such as Indo-nesia, the roles assigned to professionals andothers in perceived positions of authority aswell as the social class distinctions that cur-rently exist present substantial barriers toprovkling services in this way. Althoughindigenous support systems exist at all levels ofIndonesian society, unless there is a person orpeople in position of authority perceived as-in-charge" or -honorable," the informationreceived and the advice given are not valued.Therefore, if a team approach or the use ofinformal systems are initiated. particularly inrural areas and among poorly educated people.a person with perceived authority must notonly be in charge, but may need to offer theinformation directly to parents if it is to heperceived as true and therefore worthy ofconsideration.

Although indigenous support

systems exist at all levels of

Indonesian society, unless there is

a person or people in position ofauthority perceived as "in

charge" or "honorable,' the

information received and the

advice given are not valued.

Physicians and other rehabilitationprofessionals must therefore identify andcollaborate with individuals perceived as

9

kyinfer:pa, t/miearcher

relationshiptypically seen

in ethnographicresearch.

holding positions of authority within traditionalcommunities. Attempts at developing collabo-rations between physicians and "dukuns," i.e.,the traditional healers that are irspected andconsulted by Indonesians from all levels ofsociety, are being initiated. However, in spiteof the fact that all Indonesians, includingphysicians, consult dukuns on personal healthand spiritual matters, there appeared to be aresistance to public acknowledgement of thisrelationship among many of the professionalsinterviewed in Bandung. The resistance toopen collaboration with dukuns can also beseen as reflecting the ambivalent attitudetowards indigenous practices that comes from acolonial history. Although it seems paradoxicalthat a colonial past would limit Indonesians'willingness to become involved with traditionalIndonesian practices, it is one of many ex-amples of the love-hate relationship that existsbetween Western ideas and traditional Indone-sian society. Although Western goods, ser-vices. and technologies represent the colonialpast to some, they also offer the promise oftechnolngical and economic development.

The response to Western versustraditional ideas and practices varies throughoutthe country, and depends a good deal uponthe ethnic history of the Indonesian people mquestion and their social class. t Tpper-classand professional Javanese and Sudanesepeople, as represented in Bandung, althoughproudly Indonesian and devotedly Islamic.have either been educated and trained inEurope. or received education and training inIndonesia based on a European model. Ethnicgroups from other islands in the Indonesianarchipelago are less connected culturally withthe West, and so are less reluctant to identifythemselves with non-Western traditions andinstitutions, such as the use of traditionalmedicine. These differences, and the di-chotomy that exists in the attitudes manyIndonesians hold towards Western versustraditional values and institutions must beconsidered when offering interpretations toapplied rest-arch and in offering suggestions forservice-delivery models.

IN CONCLUSION

These expanded interpretations of thedata from Dr. Kugelmas.s' study came aboutthrough the in-depth collaboration that occured

10

between herself and Dr. Setiono. Thesemodifications have certainly added to ourunderstanding of what will be necessary in theckwelopment of services for children andfamilies in Indonesia. Its significance also liesin the recognition of the importance of workingcollaboratively with a well-informed, localresearcher such as Dr. Setiono. when conduct-ing IX search in cultures other than ones own,This woulla be true between cultures as dispar-ate as the United States and Indonesia. orwithin a sub-cultural group within ont's owncounny. The collaborative relationship is morethan the key infonnantiresearcher relationshiptypically seen in ethnographir research.Rather, an ideal collaboration exists when tworesearchers interested in exploring similarissues work together, both bringing researchand content area expertise to the work, eachintimately familiar with her own culture. andknowledgeable enough of her partner's cuhureso that each Ls aware of the biases the othermay bring. The collaboration should indu,lcresearch design and implementation. as well asthe interpretations and implications of thyresults. Most importantly, the collaboratrrelationship must he characterized by trust andmutual reswct for the perspectives of theother. The mutual understanding that resultswill benefit both the researchers and theirrespective st.wieties.

MEN Project Director JoinsNIDRR India Team

The National Institute for Disability andRehabilitation Research tNIDRID which has anongoing consultative relationship with India'sMinistry of Welfare sent a warn of ten S.

disability consultants to India to participate in atraining and evaluation consultancy for theDistrict Rehabilitation Center t DRC 1 Schemein India see INTERCHANGE Spring l990 tora report On the DIC Scheme.

Paul Ackerman of NIDRR coordinatedthe activities of the team led by William Graves.NIDRR's director. The eight trainer-evaluatorparticipants included:

Ms. Ce lane McWhuner, Director. Office

of Government Relations, Assoc. Persons with

Severe Handicaps;Christine V. Mason. Ph D., Director,

Communir, Employment Proiects, NationalAssoc. of Rehabilitation Facilities;

Corinne Kirchner, Ph. D., Director,Social Research, American Foundation for theBlind, Inc.;

Marvin Efron. 0.0., Ph.D.. Optometrist;Janet M. Williams, MSW, former Co-

Director, Community Partners. Beach Center forFamilies and Disability;41, Joan M. Patterson, Ph. D,, Asst. Profes-

sor, School of Public Health. University ofMinnesota;

Ms. Ellen L Blasiotti. Chief. Informa-tion, Dissemination and Utilization Program.

NIDRR: andMs. Diane E. Wtxxis, IEEIR. Project

Director.

After spending several days in Delhi meetingwith US Embassy and Ministry of Welfareofficials and key players in the DRC scheme inIndia. as well as the directors of the NationalInstitute of Mental Handicaps and the NationalInstitute for Visual Handicap in preparation forthe training and evaluation site visits twoteams of four spent a full week working withfolks who are trainers in the DRC scheme. The

;

INDIAN VILL4GE DRC Rebabilitaat (popcorn vendor )

DIC outside Madras

NIDRR consultants also learned about thefacilities of the National Institute on VisualHandicaps firsthand in Deradun and theNational Institute of Mental Handicap inSecunderabad. and the people associated withthose facilities, by spending four intensive daysconsulting in each of these institutes.

To help the U. S. team understandbetter the need.s of Indian villagers and thepmblems in the delivery of services in veryrural areas, all team members visited at leastone village for a day and some of the teammembers had the opportunity to visit anothervillage for another full day. The village visitgave the NIDRR team members an oppornmityto see the DRC team members at work in thevillage setting and to see some vocationalrehabitants. as well as children with disabilitieswho were receiving some services from thescheme. What we noticed was that althoughthe DRC ideally is a community based pro-gram. it tends to be influenced heavily by themedical model, with a top down approachrather than the other way around.

Since the team was asked for areport and recommendations, among otherthings. we strongly urged that the needs of thevillagers with disabilites be met throughshifting emphasis to village-generated, short-term intensive services.

It Ls amazing how much more cultur-

ally sensitive Western disability specialists ranbecome by allowing themselves the opportu-nity of observing village life in non-Westerndeveloping countries. The experience wasincredible and because the IEEIR proiectdirector has had this first hand sensitizingexperience with India and has developed newand fostered old contact.s, she will he encour-aging U. S. disability specialises to look at Indiafor possible fellowship exchanges in the future.

BEST COPY AVAILABLE 11/3

It is amazing

how Muchmore culturally

seniitiveWestern

disabilityspecialists can

become byallowing

themselves the

opportunity ofobseming

village life in

non-Western

developingcountries

Interchange: a publicattm of the International Exchange

of Evens and hiamation in Rehabilitation OEM, aprolect funded by the National button of Disability and

Rehabiltation Research to the Wodd Rehabilkadon Fund,

Inc. andsubcomnicted to the UrdversityciNewHampshke's

Institute on Disability.

The purpose of the IfEllt Is to provide oppommfonhe

U. S. disability community to become more aware of

developments in Asia, the Pacific, and Akira though

fdlowships amid to U.S. disability specialistiliublica-

dons prepared by fpreign =pats, and thmugb coax-

awes andintedap. Inter hinge ii Maher waY ofaluldng infamadois abets the I= on inteinational

devefocinvitil*more shalt the Project, cirite or call:

6 Hood House

Of New Hampshire

-Durham, NH 03824

Teh (603) 862-4767 Fa= (603) 862 4217

Editor: Diane E. Woods

Typesetting, Graphics, Co-Editor Richard Melanson

UNIVERSITY OF NEW

HAMPSHIRE

Internauonal Exchange of Evens

and Information in Rehabilitation

Institute on Disability

b Hood House

Durham, NH 03824

8 - 01170

tnetridunrftwittittacte41.

Fellowshlp application information

ThE WRF-UNH-IEEIR will make ten awards a year for

the three years of the pmject period (9/30190-9' 29/93 ).

Anyone interested in applying must be a U.S. citizen.

shouki have a -track record" in his/her disabilitydiscipline. be open to new ideas. and be in a position

to influence policy and/or practice here in the U.S. It

is a plus if the imiividual applying has some knowledge

of another culture since the fellowships are brief (3-5

weeks) and previous experience would be helpful. An

application for an IEEIR fellowship has to be focused

in such a way ro get the most out of a short penod of

time. Evidence of host arrangemems must be shown

in the application. Federal employees are not eligible

for fellowships. People with disabilities are encouraged

to apply.

Fellowship application deadlines

January 15. 1992 April 15. 1992

july 15. 1992 October 15, 1992

To obtain a fellowship application contact:

Diane E. Woods, Proiect Director. 1EEIR

Teaching Exceptional Children1920 Association DrReston VA 22091-1545

I Li

122

Non-profit Org.

U.S. Postage

PAID Bulk Rate

Permit 2

Durham. NH 03s2-4