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    This document summarizes research on stigma and HIV/AIDS among indigenous peoples in the highlands of Papua, Indonesia. Key findings include: 1) All 28 indigenous people living with HIV/AIDS interviewed experienced stigma. Stigma came from involuntary disclosure, errors in healthcare, lack of access to treatment, and cultural values surrounding illness. 2) Men were more likely to get tested for HIV but less likely to access treatment than women. Both genders faced stigma for being unable to fulfill social roles. 3) While disclosure rates were similar between genders, women faced stronger discrimination when their status was known and were more concerned about maintaining productive social roles to reduce stigma.

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    This document summarizes research on stigma and HIV/AIDS among indigenous peoples in the highlands of Papua, Indonesia. Key findings include: 1) All 28 indigenous people living with HIV/AIDS interviewed experienced stigma. Stigma came from involuntary disclosure, errors in healthcare, lack of access to treatment, and cultural values surrounding illness. 2) Men were more likely to get tested for HIV but less likely to access treatment than women. Both genders faced stigma for being unable to fulfill social roles. 3) While disclosure rates were similar between genders, women faced stronger discrimination when their status was known and were more concerned about maintaining productive social roles to reduce stigma.

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    Attribution Non-Commercial (BY-NC)
    Download as PDF, TXT or read online from Scribd
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    74 views39 pages

    Butt Morin Etal 2010 Stigma HIV

    Uploaded by

    laapede
    This document summarizes research on stigma and HIV/AIDS among indigenous peoples in the highlands of Papua, Indonesia. Key findings include: 1) All 28 indigenous people living with HIV/AIDS interviewed experienced stigma. Stigma came from involuntary disclosure, errors in healthcare, lack of access to treatment, and cultural values surrounding illness. 2) Men were more likely to get tested for HIV but less likely to access treatment than women. Both genders faced stigma for being unable to fulfill social roles. 3) While disclosure rates were similar between genders, women faced stronger discrimination when their status was known and were more concerned about maintaining productive social roles to reduce stigma.

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    Attribution Non-Commercial (BY-NC)
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    of 39

    Stigma and HIV/AIDS in Highlands Papua

    By Leslie Butt, Ph.D. Jack Morin (Djekky R. Djoht), M.Kes Gerdha Numbery, M.Hum. Ibrahim Peyon, S.Sos. Andreas Goo, S.Sos.

    June 2010 Research Collaboration between Pusat Studi KependudukanUNCEN, Abepura, Papua and University of Victoria, Canada Leslie Butt: lbutt@uvic.ca; Jack Morin: djoht67@yahoo.com

    StigmaandHIV/AIDSinHighlandsPapua

    TableofContents 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. ListofTables Table1:Fourlevelsofstigmatization Table2:Stronglyarticulatedstatementsofselfstigmatization,bygender Table3:GenderofpatientsundergoingHIVtestingatthreeWamenatest locations,cumulativeuptoMay2010 Table4:GenderofclientswhoqualifyforARVtherapiesinWamena, cumulativeuptoMay2010 Table5:GenderofpersonswhohaveeverstartedacourseofARVin Wamena,uptoMay2010 Table6:NumberofhealthcareworkersinWamenawhoagreewith stigmatizingstatementsaboutHIVpositivepersons Table7:MapoftheprovinceofPapua
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    Page 2 7 13 16 17 22 26 32 35 38

    ExecutiveSummary RingkasanEksekutif Introduction Methods StigmaandHIVstatus:DisclosureisEverything StigmaandCulture Gender,SocialWorth,andStigma HealthCareandStigma ConclusionandRecommendations Bibliography

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    StigmaandHIV/AIDSinHighlandsPapua

    1. ExecutiveSummary TheprovinceofPapuahasthehighestincidenceofHIVinfectionpercapitainIndonesia.In theremotecentralhighlandsoftheprovince,managingHIVhasbecomeahugeprojectthat involvesgettingbasicinformationouttoisolatedcommunities,providingaccesstotesting andcounselling,andofferingmedicationstomanageHIVtothosefewwhodogettested. Ratesofinfectionhavebeenoftenestimatedat2%ofthegeneralpopulation,butamong indigenoushighlandpopulations,newestimatessuggestaround7%areHIVpositive.Access toantiretroviraltreatment(ARV),supportandcareisextremelylimited,despite concentratedeffortsinthepasttwoyearstotrainstaffandimprovedrugdistributionand access.Only45peoplearecurrentlyonARVsintheJayawijayadistrict,eventhoughover 800peoplehavetestedpositiveforHIV,anuptakeofonlysixpercent.Only7outof64HIV positivepersonsareonARVsinEnarotaliinthePaniaidistrict,anuptakeofonly10%. Servicesremainbedevilledbycavaliercare,lackoffollowthrough,andpoortraining.The drugsavailabletotreatHIVaresupposedtobefreebutoftenarenot.Drugsupplyiserratic. Levelsofdisinformationremainhighinmanypartsofthehighlands.Manycommunitiesare alreadyexperiencinghighlevelsofHIVinfection,butawarenessaboutHIVremainslow.The potentialformisunderstandings,misinterpretations,andforstigmatizingpracticesinthe highlandsregionisveryhigh. Thegoalofthisresearchwastodescribetheexperiencesofindigenouspersonslivingwith HIVandAIDSinhighlandsPapua(theacronymODHAisusedtorefertoindigenouspersons livingwithHIV/AIDSinthisreport),primarilyintheJayawijayadistrict.Wegiveparticular emphasistothelinksbetweengender,healthcare,andhowcurrentconditionseconomic andpoliticalmightaffectexperiencesofstigma.Thisprojectquestions: a.WhataretheexperiencesofstigmaanddiscriminationforHIVpositiveindigenous personsinhighlandsPapua? b.Howdoesthisexperiencedifferbygender? c.Inwhatwaysdocurrentconditions,especiallyhealthcare,affecttheexperiences ofstigmaanddiscrimination? TherehasbeennoresearchonexperiencesoflivingwithHIV/AIDSinthehighlanddistrict, andverylittlewithinPapuaasawhole.Thisreportsummarizestheresultsoforiginal qualitativeresearchconductedin2009inPapua,Indonesia.Indepthinterviewsand observationswereconductedbetweenMayandNovemberintwohighlandlocations;the townofWamena,inJayawijayadistrict,andthetownofEnarotali,inPaniaidistrict.Atotal
    2

    StigmaandHIV/AIDSinHighlandsPapua

    of28ODHAwereinterviewedforthisproject.TheDani,Yali,MeeandtheLaniarethe primarygroupsdescribed.Elevenhealthcarestaffinvolvedintheprovisionofcounselling, testingandtreatmentinWamenawerealsointerviewed.Participantobservationwas conductedthroughout.ThegoalwastodescribeexperiencesandconditionsofODHAasa wholethatcanbegeneralizedtorepresenttheexperiencesandneedsofHIVpositive indigenouspersonsinthehighlands. ResearchResults HIVpositivepersonsandStigma: Theagesofthe28ODHAinterviewedforthisstudyrangefrom15to52,withan averageageof25.Fifteenofthe28respondentswerewomen,and13weremen. Mostrespondentshadlowormediumlevelsofincome,butseveralhadsecure positionswithafixedsalary.Educationlevelswereoveralllow. AllrespondentswereHIVpositiveandhadundergonetestingtoconfirmtheirstatus. Allbut3respondentswerecurrentlyonARVtherapies,providedfromfiveseparate healthcarelocations.ThethreewhowerenotonARVtherapieswereexperimenting withanindigenousherbalremedymadefromlocalforestmedicines. Allrespondentsdescribedstrongexperienceofstigma.Somerespondentsdescribed overwhelmingexperiencesofstigmaanddiscrimination,suchthattheywere persecutedandunabletoliveapeacefullife.Otherrespondentsdescribedmoderate levelsofstigma,whichcausedsignificantmodificationsintheirbehaviourbutdidnot completelyaltertheirsocialhabits. AlloftherespondentsbutonehadchosentotellatleastonepersonabouttheirHIV status.Bothmenandwomenconsistentlycontainedtheirdisclosuretoclosefamily membersusuallyhusbandorwife,parents,orsisterorbrother.Onlytwo respondentssaidtheyhadvoluntarilytoldextendedfamilymembers,andnoone hadvoluntarilyrevealedtheirstatustotheirfriends.Theiroverwhelmingreasonfor notdisclosingtheirstatuswasfearofstigmatization. Respondentsdescribedstigmatizingpracticesascomingfrommanydifferent sources,suggestingtherootsofstigmalieincloseculturalpracticesasmuchasthey doinlargermacroeconomicorpoliticalconditions.Inparticular,respondentsclearly notedstigmaarosefrom:involuntarydisclosureoftheirstatusbyothers;involuntary disclosurebyapersoninapositionofpowersuchasachurchleaderorahealthcare worker;errorsintheprovisionofhealthcareincludingtheviolationof confidentiality;lackofaccesstoARVsornonconfidentialaccess;discriminationat thelevelofextendedkinandcommunity;culturalideasandpracticessurrounding seriousillness;culturalvaluesarounddeathanddying;culturalvaluesofostracism; politicalconditionsleadingtoracism;absentorinadequatehealthcare;delaysinthe provisionofbasicservices;andselfstigmatization.

    StigmaandHIV/AIDSinHighlandsPapua

    Bothmenandwomensaidtheymostlyreceivedsupportfromtheirclosefamilies, althoughsomefamiliesdidnotsupporttheirODHArelatives.However,bothmen andwomensaidtheyhadlittleexpectationsofsocialsupportfromextendedfamily, friends,andcommunity.Greatcarewastakentoavoiddisclosingtoextendedfamily andclanmembers.Activestigmatizationappearstooccurmorefrequentlyamong distantkinandneighboursthanclosefamilymembers. Widespreaddisclosurehasseriousnegativerepercussionsforbothmenandwomen inhighlandsPapua.Disclosurethatoccursbypeopleinpositionsofpoweror authorityappearstobeparticularlydamagingforanODHA.Stigmatizationis overwhelmingwhenapersonsstatusismadepublicbyachurchleader,orwhena healthcareworkerpubliclytellsthecommunityaboutapersonsstatus. Culturalvaluesaffectresponsestostigmatoacertainextent.Amonghighland peoples,socialwithdrawalisasanctionedculturalresponsetoaseriousillnessthat isseentobecontagious.Thepersonoftenselfsecludesandlivesaloneintheforest. Asaresult,socialwithdrawalandisolationarelegitimate,andcommon,responses toanHIVdiagnosis.TheODHAdoesnotseekoutARVtherapies.Severalhealthcare workersdescribedthedominantpatternasrunbacktothevillageanddie.Health workersestimatethat75%ofthepeopletheyinitiallyspeaktoabouttesting respondinthisway,and90%ofthosewhotestpositivealsofleewithoutseeking care.Thisisalargegapintheprovisionofcare,andsignalsanurgentneedto provideadequateservicestomeettheneedsofthispopulation.

    GenderandStigma: MenaremorelikelytoaccessHIVtestingthanwomen.Menmakeup60%ofthose undergoingHIVtestsinWamena'sthreetestlocations. MenarelesslikelytoaccessARVtherapiesthanwomen. Experiencesofstigmaareroughlysimilarforbothmenandwomen.Dominant themesforbothgenderswasfeelingstigmaiftheywereunabletobeworthwhileas apersonbyfulfillingtheirsocialrolesinthefamily,withregardstoresponsibilities, children,marriageobligations,workandfinancialcontributions. Therearedifferencesinselfstigmatization(negativevaluesthatthetargetperson comestobelievearetrueofhimorherself)betweenmenandwomen.Overall, althoughwomenappearedtodisclosetheirstatusslightlymorethanmen,theywere lessabletocontainthenegativeeffectsofdisclosure.Whenwomenwerethe targetsofstigmaanddiscrimination,theywereverystronglytargeted.Thus,women displayamuchgreaterconcernwithmaintainingtheirsociallyproductiverolesthan men,asthisallowsthemameanstoreducethepossibilityofdiscriminationand stigmatization. Womensconcernsaboutselfstigmatizationarestronglytiedtotheirroleas potentialproviderofbridepriceandequitytobeobtainedthroughmarriage.Several womenlinkedtheirdecreaseinphysicalwellbeingasathreattotheirgood
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    StigmaandHIV/AIDSinHighlandsPapua

    relationshipswiththeirparentsandfamily,andbeingcriticizedonthisfrontmade themfeelnotworthy. Menappeartospendlesstimeworryingaboutkeepingupappearances,andappear tohavetodolesstomaintaintheirsenseofsocialworththanwomen.However, menwerelesslikelytoaccessARVsthanwomenwhichsuggestsstrongconcerns withthepotentiallossofsocialstatusassociatedwithdisclosure. Secrecywasakeystrategyexpressedbybothmenandwomenforretainingcontrol oftheirsocialsituation.Secrecyanddenialareactsofrefusingtogiveintothe stigmaandhopelessnessthatseemstoaccompanyHIVdiagnosisinPapua.

    HealthCareandStigma: Whileallhealthcarestaff(indigenousandmigrant)appearcaringandtryand implementbestpracticesintheirclinicwork,ethnicityappearstobeimportantin howpatientsperceivecare.Whenhealthcarestaffareindigenous,personswho suspecttheymayhaveHIVaremorelikelytogofortesting,andtofollowthrough ontestingwithARVtherapiesandcounselling. Somehealthcareworkerswhohavereceivedtrainingforvoluntarycounsellingand testingagreewithovertlydiscriminatorystatementsuchasthatODHAaredirty, shouldbeshunned,andshouldreceiveapunishment.Mostworkersagreedwith moresubtlystigmatizingstatements,suchasODHAhavingtoacceptlimitsontheir behaviourorassumingthatODHAwillfeelashamedoftheirstatus. ViolationsofconfidentialityaffectthewillingnessofPapuanstogoforHIVtesting. Manyrespondentssaidtheywereafraidhealthcareworkers(bothindigenousand migrant)wouldnotrespecttheirsecrets.SecrecyistheODHAsprimaryconcern,but confidentialityisroutinelyviolatedathealthservicesinPapua.Asonerespondent noted:Confidentiality?Itdoesntworkatall.Infact,itmightaswellnotexist.In interviewswithVCTstaff,counsellorsandofficesupportstaffreadilyacknowledge problemsmaintainingconfidentialityintheirownandtheircolleaguesclinical practice. Clientswhofearconfidentialitywillbeviolatedtendnottoreturntohealthservices fortreatment.ManyclientsreceiveHIVtestresults,andfleehometovillagesin ordertotryandmaintaintheirsecrets,andpreventstigmatizationand discrimination.ODHAareparticularlysuspiciousofmigranthealthworkers.Asone indigenousnursenoted:Papuanswillsay,BetterInotgettreatmentthere, becausetheymightkillme.Idontwanttobecaredforunderthem,betterjust die.PapuanswidelyfeelnonPapuanstaffdonotrespecttheirvalues,andjudge themonIndonesianterms.Whentheyseekcaretheyseekoutindigenousstaffat almosteveryopportunity. WhenARVtherapiesareofferedatlocationsrunbyindigenouspersons,suchasan indigenousrunAIDSclinic,oranindigenousrunNGOthatprovidestherapiesto patients,indigenouspatientsaremorelikelytoreceivesupportthere,andtoadhere
    5

    StigmaandHIV/AIDSinHighlandsPapua

    toregimens.WomenappearmorelikelytogotoindigenousrunNGOstoreceive careandtreatmentthantothehospitalorclinic. KeyRecommendations Acknowledgestigmatizingpracticesandculturalpatternsofsecrecyresultinvery lowlevelsofARVuptake. RespondtoverylowratesofHIVtestingandhighlevelsoffearbytrainingmore Papuanoutreachworkerstospreadinformationaboutcounsellingandtherapiesand howtoaccessthem. Developmoreconcretemeasurestotrainreligiousleadersaboutthedamageof stigmabyreligiousgroups. Developconcretemeasurestotrainmigranthealthcarestaffabouttheimpactof ethnicityonhowpatientsperceivecare. Providerespectfulcareandsupportservicesthatcanbeaccessedthroughpublicor NGOfacilities,ratherthantryingtoinvolvethefamilyofODHAorvisitODHAhomes tooverseedomesticconditions.Thiswillminimizecurrentfearsthatservicesdonot reflectculturalnorms. PromoteODHAcarethroughpromotingtribalsolidarity.Ratherthanencouraginga globalmodelofconfidentialityandrespectthatemphasizestheindividual, encouragecommunicationaboutstigmafromtheperspectiveofclansurvivaland prosperity.Workwithsustainedstrongidentitiesalignedalongthelinesofclanand tribe. Acknowledgegenderdifferencesinwomenandmensaccesstotesting,andin responsestoHIVdiagnosisandtreatment.ProvidemoreinformationaboutHIV testingthatisdirectedspecificallytowomen,andmakeiteasierforwomento accesstesting.Assessnewstrategiesforprovidingsupportandtreatmentformen. ProvidemoresupportfortheNGOsthatprovideexcellentcare,supportand treatmentforODHA.InvolveindigenousNGOstaffwhohaveexcellentrapportwith patientsintrainingmigranthealthworkerstodevelopmorerespectfultreatment approaches. IncreasetheroleofNGOsinprovidingsupportforwomenODHA,andexploreways NGOscandevelopmoreeffectivesupportformaleODHA. ProvidemorerewardsforhealthcareworkerswhoaresuccessfulintreatingODHA inordertoencouragethemtoremainintheirpositions.PromotetheuseofPapua specificmaterialsandcasestudiesintraining. PromotethemuchgreaterparticipationofPapuansinthecareandsupportof ODHA.AcknowledgetheimportanceofethnicityinshapinghowPapuanODHA respondtotheirHIVstatus.

    StigmaandHIV/AIDSinHighlandsPapua
    2.RingkasanEksekutif ProvinsiPapuamemilikijumlahkasuspenularanHIVtertinggiperkapitadiIndonesiadantermasuk salahsatutertinggidiAsia.Diwilayahpegunungantengahyangterpencil,penangananHIVsudah menjadiproyekbesardiantaranyamencakuppenyediaaninformasidasarkeberbagaikelompok masyarakatterisolir,penyediaanaksestesdankonseling,sertapemberianpengobatanuntuk merekayangbenarbenarmenjalanites.Tingkatpenularanseringdiperkirakansekitar2%dari jumlahpenduduk,namundiantarapendudukpribumipegununganperkiraanterbarusekitar7% yangpositifterkenaHIV.AkseskepengobatanARV,dukungandanpenanganansangatlahterbatas, walausudahadaupayaterpusatdalamduatahunterakhiriniuntukmelatihstaffdanmemperbaiki distribusidanakseskeobatobatan.Hanya45orangsaatinimengikutipengobatanARVdi kabupatenJayawijayawalaupunlebihdari800orangtelahditespositifHIV,suatukenaikansebesar hanya6%.Hanya7orangdari64orangyangpositifmengidapHIVdiEnarotaliyangsedang menjalanipengobatanARV,suatukenaikansebesarhanya10%.Layananyangdisediakanmasihapa adanya,keterbatasanpendampingandanminimnyapelatihan.Obatobatanyangdisediakanuntuk mengobatiHIVmestinyagratisnamunkadangtidakdemikian.Penyediaanobatobatantidakterus menerus.Tingkatpemberianinformasiyangsalahtetaptinggidiwilayahpedalaman/pegunungan. BanyakkelompokmasyarakattelahterinfeksiHIVpadatingkatanyangtingginamunkesadaran tentangHIVtetaprendah.Potensiterjadinyakesalahpahaman,interpretasiyangkeliru,danpraktek praktekstigmadiwilayahpegunungansangattinggi.Dalamkondisisepertiinitingkat penularan/infeksiyangtinggisertatidakadanyapengetahuantentangterapimakapraktekpraktek stigmamenjadikurangdipahaminamunberakibatsangatmerugikanbagiparaindividudan kelompokkelompokmasyarakat. Tujuandaripenelitianiniadalahuntukmenggambarkanpengalamanpengalamanyangdihadapi olehparaODHAdiwilayahpegunungandiPapua(istilahODHAdipakaidalampenelitianiniuntuk pendudukasliPapuauangmengidapHIV/AIDS),terutamadiwilayahkabupatenJayawijaya.Kami memberipenekanankhususpadahubunganantaragender,layanankesehatan,danbagaimana kondisikondisisaatiniekonomidanpolitikdapatmempengaruhiberbagaipengalamanstigma. Kamimembedakanantarastigmadandiskriminasi.Istilahstigmadidefinisikansebagaiperbedaan perbedaanyangnilainyaberkurangyangdarisisipandangsocialmendiskreditkanorangtertentu, dandikaitkandenganberbagaistereotypenegative.Diskriminasisendirididefinisikansebagai tindakantindakantertentuyangdidasarkanolehberbagaistereotipenegatiftadi,aksiaksiyang dimaksudkanuntukmendiskreditsekelompokorangyangkurangberuntung.UNAIDSmendorong pemahamanyanglebihbesartentangbagaimanastigmadandiskriminasimempengaruhiupaya upaya/responsterhadapHIV.Dalampenelitianinikamimemberipenekanankhususpadahubungan hubunganantaragenderdanstigma,danjugatentangbagaimanakondisisaatiniekonomi,politik, danlayanankesehatanmempengaruhipengalamanpengalamanstigma.Pertanyaanpertanyaan penelitianyangdiajukanproyekiniadalah: a.Apasajapengalamanpengalamanstigmadandiskriminasiolehparapendudukasli PapuayangpositifHIVyangtinggaldipedalaman/pegununganPapua? b.Bagaimanaperbedaanperbedaanpengalamanyangdialamidilihatdarisisigender? c.Bagaimanakondisisaatini,khususnyastandardstandarlayanankesehatan, 7

    StigmaandHIV/AIDSinHighlandsPapua
    mempengaruhipengalamanstigmadandiskriminasi? BelumadapenelitiantentangpengalamanpengalamantentangorangyanghidupdenganHIV/AIDS dikebupatenpegunungan,danjugamasihsedikitsekaliuntukPapuasecaramenyeluruh.Laporanini merangkumhasilhasilpenelitiankwalitatiforisinilyangdilaksananakantahun2009diPapua, Indonesia.WawancaramendalamdanobservasidilaksanakanantarabulanMeidanNovemberdi dualokasipedalaman;kotaWamenadikabupatenJayawijayadankotaEnarotalidikabupaten Paniai.Sebanyak28ODHAdiwawancaraiuntukproyekini.Sebanyak28ODHAdiwawancaraiuntuk proyekini.SukuDani,Yali,Lani,danMeemerupakankelompokkelompokutamayangdibahas disini.MaterimateridarisukuMeedigunakansebagaimateriklarifikasidanpembenaran.Sebelas stafkesehatanterlibatdalampemberiankonseling,testingdanpengobatan(treatment)diWamena jugadiwawancarai.Observasipartisipandilakukanselamapenelitian.Tujuannyaadalahuntuk menggambarkanpengalamanpengalamandankondisidariODHAyangbisadigeneralisasiuntuk mewakilipengalamanpengalamandankebutuhankebutuhanorangorangasliPapuayangpositif HIVdiwilayahpegunungan/pedalaman. HasilPenelitian OrangorangasliPapuayangpositifHIVdanStigma: Usiadari28ODHAyangdiwawancaraidalamstudiiniberkisardari1552denganratarata usia25tahun.Limabelasdari28respondenadalahperempuandan13oranglakilaki. Kebanyakanpararespondenmemilikitingkatpenghasilan/pendapatanyangrendahatau menengah,namunadabeberapadarimerekayangmemilikipekerjaantetapdengangaji tetap.Tingkatpendidikanmerekasemuanyarendah,danperempuanberpendidikankurang darisekolahmenengah.Paralakilakiberpendidikanagaksedikitlebihtinggi.Polaini menggambarkannormanormayangberlakudiwilayahpegununganPapua. SemuarespondenpositifHIVdansudahmenjalanitesgunamengkonfirmasistatusmereka. Darisemuanyacuma3orangsajayangsaatinimenjalaniterapiARVyangdisediakanoleh5 lokasilayanankesehatanyangberbeda.Tigaorangyangsaatinitidakmenjalaniterapi menjalanipengobatantradisionalyaituramuramuanyangdiambildarihutansetempat. Penelitianinimengungkapkanadanyaketakutanketakutanyangluarbiasatentangstigma daripararesponden,danberbagaiupayaekstrimyangdilakukanpararespondenuntuk mencobadanmelindungidirimerekadaristigma.Banyakrespondenmenyebutkancerita ceritayandsudahdiketahuitentangorangorangyangdihukumhinggahampirmati,atau dihinaolehmasyarakat,yangmerekapakaisebagaialasanuntukmelindungidirimereka. Seluruhrespondenmenceritakanpalingkurangadanyapengalamantentangstigma. Beberaparespondenmenceritakanapengalamanpengalamanluarbiasatentangstigmadan diskriminasisehinggamerekadiperlakukandengansangattakadildantakbisahidupsecara normal.Adabeberaparespondenyangmenceritakanstigmayangmerekaalamidalam tingkatanyangsedangsedangsajayangmenyebabkanmodifikasiperilakuyangcukupbesar namuntakmerubahsamasekaliperilakusosialmereka.Seorangrespondenmenyatakan banggadankemauankerasdalammenghadapidiskriminasi. Hampirsemuarespondenmemilihuntukpalingtidakmemberitahukepadasatuoranglain tentangstausHIVmereka.Baiklakilakimaupunperempuansecarakonsistentidakmau memberitahuparaanggotaterdekatkeluargamerekabiasanyaisteri,suami,orangtua, 8

    StigmaandHIV/AIDSinHighlandsPapua
    atausaudaraperempuandansaudaralakilaki.Hanyaduarespondenmengatakanmereka secarasukarelamemberitahuparakerabatkeluargamereka,dantakadayangterusterang memberithaustatusmerekaketemantemanmereka.Alasanterbesaruntuktidak memberitahustatusmerekaadalahtakutakanstigmatisasi. Pararespondenmenceritakanpraktekpraktekstigmadatangdariberagamsumber,yang mempertandabahwaakarstigmaberasaldaripraktekpraktekbudayayangdekatyangtak jauhberbedadenganyangterjadidikondisikondisiekonomimakroataupolitikyanglebih besar.Secarakhusus,pararespondendenganjelasmenyebutkanstigmaberasaldari: pengungkapanstatusmerekaolehoranglain;pengungkapanstatusmerekaolehorang lainyangmemilikikekuasaansepertipemimpingerejaataupetugaskesehatan; kesalahandalampenyediaanlayanankesehatantermasukpelanggaranatas kerahasiaan;kurangnyaakseskeARVataupelanggaranakses;diskriminasiditingkat kerabatdanmasyarakat;pikiranpikiranbudayadanpraktekpraktekmenyangkutsakit yangserius;nilainilaibudayaseputarkematiandanajal;nilainilaibudayamenyangkut pengucilan;kondisikondisipolitikyangmenyebabkanrasisme;ketidakadaanatautidak cukupnyalayanankesehatan;penundaandalampenyediaanberbagailayanandasar. PengungkapanstatusHIVseseorangyangdilakukansecarameluasmembawadampak negatifyangseriusbaikterhadapperempuanmaupunlakilakidipedalaman/pegunungan Papua.Pengungkapanyangterjadiolehorangorangyangmemilikikekuasaantampaknya membawadampakamatmerugikan/merusakbagiseorangODHA.Stigmatisasimenjadi sangatmencekambilamanaseorangpemimpingerejamengungkapkan/mengumumkan statusmerekakemasyarakat.Respondenrespondenlainnyamenceritakanstigmatisasi ekstrimyangterjadiketikaseseorangpekerjakesehatanmengungkapkanstatusmerekake masyarakatluas. Adanyasuatuzonaantarayaknipengungkapanseparohyangmenunjukanpentingnya dukungankeluargadanmempertahankankerahasiaan.Parapenelitimengumpulkan sejumlahkasusdimanaODHAamatdicurigaimempunyaiHIV,dandimanaadasejumlah orangdalammasyarakatataukeluargabesar/kerabatmenuduhODHApositifmengidapHIV. Namuntidaksatupunorangorangyangmemilikipengaruhdimasyarakatyangmembela responden,sedangkanparakeluargadanpasanganhidupmenunjukansikapmenolong. Dalamkasuskasusinikeluargaintidankerabatdekatmemainkanperankritisdalam melindungirespondendaridiskriminasiyangmemperparahkeadaan. Nilainilaibudayamempengaruhiresponsterhadapstigmahinggaketingkatantertentu. Diantaramasyarakatpegunungan,penarikandirisecarasosialmerupakansuaturespons budayayangdisetujuiterhadapsuatupenyakitseriusyangdianggapmenular.Seseorang kadangmengucilkandiridanhidupsendirididalamhutan.Sebagaiakibatnya,penarikandiri danisolasimerupakansesuatuyangsahdanbiasasebagairesponsterhadapdiagnosisHIV. ODHAtakmengupayakanterapiARV. Kerahasiaanmerupakansuatustrategibudayautamayangdinyatakanolehlakilakimaupun perempuanuntukmempertahankankontrolsiatuasisosialmereka.Kerahasiaandan penyangkalandilihatsebagaistrategistrategisahuntukmenolakdatangnyastigmadan keputusasaanyangtampaknyamendampingidiagnosisHIVdiPapua.Parapetugas kesehatanmenjelaskanpolabudayadominanyaknikembalikekampungdanmati. Beberapapetugaskesehatanmemperkirakan75%dariorangorangyangawalnyadihubungi

    StigmaandHIV/AIDSinHighlandsPapua
    merespondengancaraini,dan90%darimerekayangditespositifjugamelarikandiritanpa memintalayanan.Inimerupakansuatugapbesardalampenyediaanlayanankemasyarakat. GenderdanStigma: Studiinimenunjukansejumlahperbedaanbesarmenyangkutbagaimanalakilakidan perempuanmeresponterhadaptesHIVdanterapiARV. LakilakicenderungmenjalanitesHIVdibandingperempuan. PerempuanlebihcenderungmenjalaniterapiARVdibandinglakilaki. Pengalamanpengalamanstigmapadakasarnyasamauntuklakimaupunperempuan.Tema temadominanbagikeduagenderadalahmerekamerasaadanyastigmabilamerekatidak mampumenjadimanusiayangbergunasebagaimanusiayaknidenganmemenuhiperan peransosialmerekadalamkeluarga,,yangberkenaandengantanggungjawab,anakanak, tanggungjawabperkawinan,pekerjaandankontribusikeuangan. Adaberbagaiperbedaandalamstigmainternal(nilainilainegatifyangdibuatsupayaorang yangditargetpercayabahwanilainilaiitubenartentangdirinya)antaralakilakidan perempuan.Perempuanlebihmencernaistigmadibandinglakilaki.Paraperempuanlebih sangatmerasatakdihargaiataudibutuhkan.Lakilakimerasastatusmerekasebagai kesalahanmerekadanmerekamerasamalutentangdirimerekasendirinamunmereka tidakterlalumerasahilanghargadiridibandingperempuan. Perempuankurangbegitumampumengurangiefeknegatifdaripengungkapanstatus mereka.Ketikaperempuanmenjaditargetdaristigmadandiskriminasi,merekamenjadi targetyangluarbiasa.Sehingga,perempuanmenunjukansuatukekhawatiranyanglebih besardalammempertahankanperanperansosialmerekayangproduktifdibandinglaki laki.Menjadiproduktifsecarasosialmemudahkanmerekauntukmengurangikemungkinan diskriminasidanstigmatisasi. Kekhawatiranperempuantentangstigmatisasidirisendirisangateratdenganperanperan merekasebagaipotensipenyediamaskawindanbarangbaranglainmelaluiperkawinan. Beberapaperempuanmenghubungkanmenurunnyakeadaantubuhmerekasebagai ancamanterhadaphubunganbaikmerekadenganorangtuadankeluarga,danbiladikritik tentanghaliniakanmembuatmerekamerasatidakberharga. Lakilakitampaknyamengalamisedikitkesulitandalammenyembunyikankondisimereka dantidakbanyakambilpusingtentangpenampilanmereka.Namun,lakilakikurang mendapatakseskeARVdibandingperempuanyangmenunjukanbahwalakilakiamat khawatirtentangpotensihilangnyastatussosialyangmuncullewatpengungkapanstatus. Layanankesehatandanstigma: OrangorangasliPapuaamatmembutuhkantesHIV,konselingdanpengobatandibanding orangorangpendatangyanghidupdipedalamankarenapengidapHIVlebihbanyakorang asliPapuadibandingorangpendatang/migran.Namun,menurutbanyakresponden,orang orangasliPapuacenderunglebihmenyukailayanankesehatanyangdiberikanolehpara pekerjakesehatanyangberasaldariorangasliPapuadibandinglayanankesehatandari pekerjakesehatanyangberasaldaripetugaskesehatanluarPapua/pendatang.Meskisemua petugaskesehatan(asliPapuadanpendatang)tampaknyamenunjukanperhatiandan berupayabekerjadengansebaikbaiknya,etnisitastampaknyamenjasihalpentingyang 10

    StigmaandHIV/AIDSinHighlandsPapua
    mempengaruhiapakahpasienmerasamerekadistigmaatautidak.Bilaparapetugas kesehatanadalahorangorangasliPapuamakaorangorangyangakanmenjalanites (merasamemilikiHIV)akanbenarbenarmengikutitesdankemudiandanmelanjutkannya denganterapiARVdankonseling. Sejumlahpetugaskesehatanyangtelahmemperolehpelatihankonselingdantessukarela (VCT)setujudenganadanyapernyataanberlebihanyangsifatnyadiskriminatifseperti: ODHAitukotor,mestiditolakdanmestidihukum.Kebanyakanpetugassetujudengan pernyataantentangstigmayanglebihhalusseperti:ODHAmestimenerimapembatasan atasperilakumerekaatauberanggapanbahwaODHAakanmerasaamaludenganstatus mereka. PelanggaranataskerahasiaanmempengaruhikeinginanklienuntukmenjalanitesHIV. Banyakrespondenmengatakanmerekatakutparapetugaskesehatan(asliPapuadan pendatang)tidakakanmenjagarahasiamereka.Kerahasiaanterusdilanggardipusatpusat pelayanakesehatandiPapua.Sepertidiungkapseseorangresponden:Kerahasiaan?Sama sekalitidakada.Malahan,bisasajatidakadasamasekali.Dalamberbagaiwawancara denganstafVCT,konselordanstafkantorsamasamamengakuipersoalandalammenjaga kerahasiaanbaikpadadirimerekasendirijugadenganpraktekklinisrekanrekankerja mereka.Parapasientakutbilaadaseorangpetugaskesehatanyangdatangmengujungi rumahseorangODHAuntukmengawasimakanandanlayanandalamkeluarga. Paraklienyangtakutkerahasiaannyaterungkapcenderungtidakkembalilagikelayanan kesehatanuntukmendapatkanpengobatan.BanyakklienyangmenerimahasiltesHIV,dan melarikandirikekampungkampungdalamupayamenyembunyikanrahasiamereka.ODHA secarakhususcurigaterhadappetugaskesehatanpendatang.Sepertisalahsatuperawat asliPapuakatakan:OrangorangPapuaakanberkatasepertiini,Lebihbaiktidakmendapat perawatandisinikarenamerekaakanbunuhsaya,sayatidakmaudirawatmereka,lebihbaik matisaja.OrangorangPapuasecarameluasmerasabahwastafkesehatanpendatang tidakmenghormatinilainilaimereka(orangPapua),danmenilaimerekamenurutaturan aturanIndonesia.MerekaakanberupayamencaripetugaskesehatanorangasliPapuadi setiapkesempatan. KetikaterapiARVdiberikandilokasilokasiyangdiselenggarakanolehorangasliPapua, sepertiklinikAIDSatauLSMyangdijalankanolehorangasliPapuayangmenyediakanterapi bagipasien,makapasienorangasliPapuaakanlebihmudahmendapatdukungandisitu,dan menurutiaturanaturanyangditetapkan.Perempuantampaknyalebihmungkinpergiuntuk mendapatkanterapidiLSMLSMyangdijalankanolehorangPapuagunamendapatkan layanandanpengobatandibandingkerumahsakitatauklinik.

    Rekomendasirekomendasiutama MeresponrendahnyatingkattesHIVdantingginyatingkatketakutandenganmelatihlebih banyakorangasliPapuasebagaitenagaoutreachgunamenyebarkaninformasitentang konselingdanterapisertabagaimanamendapatakseskekonselingdaninformasi. Mengembangkantindakantindakannyatagunamemberipelatihanpenyadaranbagipara tokohagamatentangdampakburukdaristigmaolehkelompokkelompokagama.

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    StigmaandHIV/AIDSinHighlandsPapua
    Mengembangkantindakantindakannyatagunamemberipelatihanpenyadaranbagipara petugaskesehatanpendatangtentangbagaimanapraktekprakteklayanankesehatanyang berpihaksebelash(bias)bisameningkatkanketakutandanstigma. MengakuipentingnyaisuetnisdalammembentukbagaimanaODHAPapuamerespon terhadapstatusHIVmereka. Memberilayanandenganrasahormatsertadukunganlayananyangbisadiperolehlewat berbagaifasilitasumumdanyangdisediakanLSM,daripadamelibatkankeluargaODHAatau mengunjungirumahrumahODHAuntukmelihatkondisikeluarga.Iniakanmengurangi ketakutansaatinibahwalayananlayanansaatiniterlalumenggangu. MempromosikanlayananODHAlewatpromosisolidaritaskesukuan.Daripadamendorong modelkerahasiaanglobaldanrasahormatyangmenekankanperorangan,dorong komunikasitentangstigmadariperspektifkelangsunganhidupsukudankesejahteraan. Mulaidenganidentitasidentitaskuatapayangdipunyaiklandansuku. Akuiperbedaanperbedaangenderpadalakilakidanperempuanmenyangkutakseketes, sertaresponterhadapdiagnosaHIVdanpengobatannya.Berikaninformasilebihbanyak tentangtesHIVyangdiarahkankhususnyabagiperempuanndanpermudahaksestesbagi perempuan.Cobaberbagaistrategibarugunamenyediakandukungandanpengobatanbagi lakilaki. BerikanlebihbanyakdukunganbagiLSMLSMyangmemberilayananyangprima,dukungan danpengobatanbagiparaODHA.LibatkanstafLSMpribumiPapuayangmemilikisejarah penangananpasienyangbaikdalampelatihanpetugaskesehatanbagipetugaskesehatan pendatang/nonPapuagunamengembangkanpendekatanpendekatanpengobatanyang yanglebihdidasarkanpadarasahormat. TingkatkanperanLSMLSMdalampenyediaandukunganbagiODHAperempuan,dan telusuricaracaraLSMagarbisamengembangkandukunganyanglebihefektifbagiODHA lakilaki. Sediakanganjaran(rewards)bagiparapetugaskesehatanyangsuksesdalammengobati ODHAagarmendorongmerekauntuktetapberadadalamposisimereka.Promosikan penggunaanmaterimateriyangspesifikPapuasertastudistudikasusdalampelatihan. PromosikanpartisipasiyanglebihbesardariorangorangasliPapuadalamlayanandan pengobatanODHA.

    12

    StigmaandHIV/AIDSinHighlandsPapua

    3. Introduction TheprovinceofPapuahasthehighestincidenceofHIVinfectionpercapitainIndonesia,and amongthehighestinAsia.Intheremotecentralhighlandsoftheprovince,managingHIV hasbecomeahugeprojectthatinvolvesgettingbasicinformationouttoisolated communities,providingaccesstotestingandcounselling,andofferingmedicationsto manageHIVandAIDStothosefewwhodogettested. Ratesofinfectionhavebeenoftenestimatedat2to3percentofthegeneralpopulationin theprovinceofPapua,butamongindigenoushighlandpopulations,newestimatessuggest around7%areHIVpositive(Reesetal.2007).Transmissioninthehighlandsappearsto occurprimarilythroughheterosexualencounters.Inthehighlands,reportsofHIVrateshave consistentlybeenlowbecausemechanismsforreportinghavebeeninadequate.Inthe formerJayawijayadistrict(population250,000)inthecentralhighlands,forexample,ifwe estimatea7%infectionrate,theremaybe17,000personsinfected,farmorethanthe800 whohavetestedpositiveasofMay2010. AlthoughmigrantsmakeupasignificantpercentageofthePapuanpopulation,ithas becomeclearthatmoreindigenousPapuanscontractHIVthandomigrants.A2007report showsthatHIVprevalenceamongPapuansisalmosttwiceashighasamongnonindigenous residents(Irmanigrumetal.2007:49).Disproportionateinfectionratesareparticularly obviousinthehighlandsregion,wherea2009testingdrivethattargetedbothindigenous PapuansandIndonesianmigrantsfoundthat100%ofthosewhotestedpositivewere indigenousPapuans.Asthetestdrivecoordinatornoted:formeitwasasthoughared lightwenton.ThisisacrisisforthePapuanpeople. Inthesecommunities,accesstoARVtreatment,supportandcareisextremelylimited.The effortssincetheearly2000sintherestofIndonesiatomakeARVsandtestingmorewidely availablehavenotbeencarriedoutinmostofthehighlands(SpiritiaFoundation2006; Green2010).Servicesremainbedevilledbycorruption,lackoffollowthrough,andpoor training.Moneysentfromexternalagenciesdoesnotappeartomakeitswaydowntolocal communities.ThedrugsavailabletotreatHIVaresupposedtobefreebutoftenarenot. DrugsforopportunisticinfectionssuchasTBarenotfree.Drugsupplyiserratic.ARVshave onlyreliablybeenavailableattheprovincesflagshipsiteonthecoastsince2007,andin somehighlandsdistrictsonlysince2008(withtheexceptionoftheregionaroundTimika). Eventhoughthedrugsareavailable,theuptakeisextremelylow.In2010,onlybetweensix andtenpercentofpeoplewhotestHIVpositivegoontobeginacourseofARVs.Over90%

    13

    StigmaandHIV/AIDSinHighlandsPapua

    ofthosetestedfleewithouttakinganydrugsatall.Thisnumberisshockinglylow.This reportsuggeststhatstigmaisakeyfactorinthislowuptake. 1 UnlikeintherestofIndonesia,ODHAinhighlandsPapuadonotnecessarilyhaveaclear pictureofHIVanditstreatment. 2 Levelsofdisinformationremainhighinmanypartsofthe highlands,suchthatmanycommunitiesarealreadyexperiencinghighlevelsofHIV infection,butawarenessaboutHIVremainslow.Insituationslikethis,thepotentialfor misunderstandingsandconsequentdiscriminationisrife.However,therehasbeenno researchonexperiencesoflivingwithAIDSinthehighlanddistrict,andverylittlewithin Papuaasawhole. Thegoalofthisresearchwastodescribetheexperiencesofindigenouspersonslivingwith HIVandAIDSinhighlandsPapua(theacronymODHAisusedtorefertoindigenouspersons livingwithHIV/AIDSinthisreport),primarilyintheJayawijayadistrict.Wegiveparticular emphasistothelinksbetweengender,healthcare,andhowcurrentconditionseconomic andpoliticalmightaffectexperiencesofstigma.Thisprojectquestions: a.WhataretheexperiencesofstigmaanddiscriminationforHIVpositiveindigenous personsinhighlandsPapua? b.Howdoesthisexperiencedifferbygender? c.Inwhatwaysdocurrentconditions,especiallyhealthcare,affecttheexperiences ofstigmaanddiscrimination? Thetermstigmaiscentraltothisproject.Wedistinguishbetweenstigmaand discrimination.Thetermstigmacanbedefinedasdevalueddifferencesthatareseenas sociallydiscrediting,andthatarelinkedtonegativestereotypes.Bydiscrimination,we meanspecificactsthatbuildonthesenegativestereotypes,actionsaremeanttodiscredit anddisadvantagepeople(Mamanetal.2009:2272).Inpractice,thestigmatizedindividualis perceivedasachallengetothemoralorder(stigmatization),andhenceissomeonewho mustbeputdown,orisolated(discrimination).ParkerandAggleton(2003)have emphasizedhowstigmacanoccuratmultiplelevels.Theyidentify4mainlevels:self; society;institutions;andstructure,asdescribedinTable1.

    Thelinkbetweenhighlevelsofstigmaandlowuptakehasbeenreportedinotherareasoftheworld.See UNAIDS2007 2 ComparewithGreen(2010)andBoellstorff(2009)

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    StigmaandHIV/AIDSinHighlandsPapua

    Table1:FourLevelsofStigmatization FourLevelsofStigmatization Self:selfgeneratedinternalmechanisms,whichwetermselfstigmatization Society:gossip,abuseandostracismatthelevelofcultureandcommunity Institutions:preferentialordiscriminatorytreatmentininstitutions Structure:Widerinstitutionssuchaspoverty,racism,andcolonialismthat consistentlydiscriminateagainstaparticulargroup. Thisprojectalsolooksatdifferencesinstigmaalongthelinesofgender.Stigmafeedson existinginequalitiesandfollowsalongthefaultlinesofsociety(EvesandButt2008).Thus, womenarealreadyunderstoodasstigmatizedwhentheyarepartofacultureor communitywheretheyhavelowersocialstatusandlessaccesstopoliticalandeconomic resourcesthanmen(Reidpathetal.2005).ThefearsarousedbytheAIDSepidemiccan intensifygenderpolitics,makingexistingdiscriminationworse.Inepidemics,womenare oftenblamedasthevectorofdiseaseanddisaster,andsingledoutasdirty,diseasedand undeserving(Lawlessetal.1996). Last,thisprojectexplorestheroleofhealthcareinstigmatizingprocesses.WithinIndonesia, studiesarereportingstigmatizingpracticesbyhealthcareworkersinmanypartsof Indonesia.Workersoftenviolateconfidentialityofthepatient(Suherman2009,Sumintardja 2009,Haruddin2009).ThepatternsappearfarmoreproblematicinPapua.Mostofthe provinceshealthcareinstitutionsarestillrunbyIndonesianmigrantstotheprovince. Patientsreportbeingdiscriminatedagainstbymigranthealthworkers.Healthcareservices withintheregionalsoreflectanunstableeconomy,inadequateinfrastructures,andracial inequitiesthattendtoprivilegewealthiermigrantIndonesiansoverindigenouspopulations. HealthcareisviewedbymostPapuansfromwithinthiseconomicandpoliticalcontext. Papuansoftenvieweffortstoimprovehealthconditionsasinadequate,andtheircritiques extendtoHIVpreventionandtreatmentaswell. Thelivingconditionsofculture,gender,andhealthcareaffecthowODHAviewtheissuesof stigmaandHIV/AIDS.TheresultsfromthisstudyprivilegethevoicesofODHAinterviewed forthisproject.Theintentionistomakerecommendationsaboutpossiblestrategiesthat buildonrespectfortheexperiencesofODHA,andthatcanbeappliedtothehighlands Papuanregionasawhole. 3

    Thehighlandsregionincludesthefollowingtenkabupaten:Paniai,Yalimo,Nduga,PuncakJaya,Mamberamo Tengah,PegununganBintang,Yahukimo,Tolikara,Lanijaya,andJayawijaya.

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    StigmaandHIV/AIDSinHighlandsPapua

    4. Methods Thisreportsummarizestheresultsoforiginalqualitativeresearchconductedin2009in Papua,Indonesia.ExperiencedPapuanresearchersfromtheUniversitasCenderawasih Abepurainterviewed28ODHA,usingqualitativeresearchmethods. Indepthinterviewsandobservationswereconductedintwohighlandlocations;thetown ofWamena,inJayawijayadistrict,andthetownofEnarotali,inPaniaidistrict.Fourdifferent tribalgroupsarerepresentedinthisresearch,theLani,theDani,theYali,andtheMee. Theselocationsarerepresentativeofgeneraltrendsinthehighlandsdistrict. Fifteenoftherespondentswereadultwomen,theother13weremen.Allareindigenous. Eachresearcherinterviewedpersonsoftheirowngenderwheneverpossible.Researchers usedanethicsprotocolapprovedbytheUniversityofVictoria.Researchersuseda standardizedinterviewprotocolforallinterviews.AlloftheODHAdiscussedinthisreport havebeengivenpseudonyms.IfanODHAwantedtobepartoftheresearchproject,they contactedtheresearchersdirectly.Carewastakenateverystepofthewaynottocoerce respondentsinanyway.Havingindigenousresearchersmadeapositivedifferenceinhow potentialrespondentsviewedtheinterviewprocess. Elevenhealthcarestaffinvolvedintheprovisionofcounselling,testingandtreatmentin Wamenawerealsointerviewed.Theseinterviewsfocusedontheideals,valuesand practicesamonghealthcarestaff.Theseresultsallowsanalysistofocusonthepossible stigmatizingeffectsofhealthcareproviders,ratherthanassumetrainedstaffwouldonly haveapositivebenefitonthelivesofHIVpositivepersons. Itisimportanttoacknowledgewhatisnotincludedintheseresults.Theseresultsdonot reflecttheexperiencesofallHIVpositivepersonsinthehighlandsdistrictbecausethevast majorityofHIVpositivepeopleareafraidtogettested,takeARVtherapies,ordisclosetheir status.EveryoneweinterviewedhadtestedpositiveforHIV,andallbutthreewere currentlyonARVs.Inotherwords,thepeoplewedescribeinthepagesthatfolloware amongthebestservedintheregion.

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    StigmaandHIV/AIDSinHighlandsPapua

    5. StigmaandHIVstatus:DisclosureisEverything Resultsfromall13menand15womeninterviewedshowanoverwhelmingfearof stigmatization.Thisfeartraversedallagegroups,allincomelevels,andbothgenders.Our respondentswereagedfrom15to52,withanaverageageof25.Mostrespondentshad lowormediumlevelsofincome,butseveralhadsecurepositionswithafixedsalary. Educationlevelswereoveralllow,withmostwomenreceivinglessthanahighschool education.Menwereslightlybettereducated. Acrossthisdiverserangeofpeople,respondentsdescribedexperiencingstigmafrommany differentsources.Theseinclude: involuntarydisclosureoftheirstatusbyothers voluntarydisclosureoftheirstatusbyothers disclosurebyapersoninapositionofpowersuchasachurchleaderorahealthcare worker disclosurebyspouseorparent errorsintheprovisionofhealthcare lackofaccesstoARVsornonconfidentialaccess lackofknowledgeaboutHIV,transmission,andARVs discriminationatthelevelofextendedkinandcommunity culturalideasandpracticessurroundingseriousillness culturalvaluesarounddeathanddying culturalvaluesofostracism politicalconditionsleadingtoracism absentorinadequatehealthcare delaysintheprovisionofbasicservices selfstigmatization

    Thiscompilationiswideranging.Itremindsusthattherootsofstigmalieinclosecultural practicesasmuchasinlargermacroeconomicorpoliticalconditions.Itismisleadingto assumethatstigmaexistsonlyintheobviousdomainofovertpublicdiscrimination,suchas whensomeonerefusestosharefoodwithanODHA.Stigmacanbesubtleandinsidious.The ODHAweinterviewedappearawareofthemultipleavenuesofstigma,andasaresultthey trytoprotectthemselvesfrombeingstigmatizedinmultipleways. ControllingDisclosureControlsStigma ThemostimportantstrategyODHAusetocontrolstigmaistotryandcontrolwhothey disclosetheirstatusto.TheactofdisclosureisacriticaleventinthelivesofODHA.Almost alloftherespondentshadchosentotellatleastonepersonabouttheirstatus.Onlyone
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    StigmaandHIV/AIDSinHighlandsPapua

    persondidnottellanyone.However,norespondentvoluntarilywentpublicwiththeir status.Bothmenandwomenconsistentlycontainedtheirdisclosuretoclosefamily membersusuallyhusbandorwife,parents,orsisterorbrother.Onlytworespondentssaid theyhadvoluntarilytoldextendedfamilymembers,andnoonehadrevealedtheirstatusto theirfriends. Bothmenandwomensaidtheyreceivedsupportfromtheirnuclearfamilies,butnotall familieswelcomedODHAkin.Oneofourrespondentsdescribedhowherfatheryelledat her,beather,andbanishedherfromhishousebecauseherwantonwaysresultedinher ODHAstatus.Incontrast,anotherwomanshusbandunconditionallyacceptedherHIV statuseventhoughhehimselfwasHIVnegativeanditwasunclearhowshehadbecome infected.Byandlarge,inhighlandsPapuaclosefamilymemberssupporttheirODHA relatives.Onemanwascompletelyshunnedbyhischurch,hisclanandhiscommunity,but hisfamilycontinuedtosupporthim.Hesays: Thereareonlythreeofushere:me,myfatherandanotherrelativeofmyfathers. TheysaythatifIdie,theywilldiewithmetoo.Sowelivetogether,weeattogether, wesittogether,andwetellstoriestogether.Itistheywhobatheme,whotakeme tothebathroom,andwhohelpmewitheverythingthatIneed. Bothmenandwomendidnotexpectsupportfromextendedfamilyorfriends.Infact,active stigmatizationhappensoftenamongdistantkinandneighbours,andistheformof stigmatizationmostODHAworryabout. Ourresearchshowsthatwidespreaddisclosurehasseriousconsequences.Inthemain, peoplewereafraidtodisclosebecausetheywereafraidofbeingdiscriminatedagainst.We hadmanyrespondentsexpressfearslikethis: Itshardformetotalktopeopleaboutit[mystatus]becauseIamscared,scared theywontwanttotalktome,orspendtimewithmeanymore,andtheywillkeep awayfromme.Theywontwanttoeatanddrinkwithme. Ontheotherhand,disclosurethatistightlycontrolledallowsanODHAtoretainsome controloverhowothersperceivethem.Forexample,Jebo,ayoungwoman,says: Imshy,Imafraidifanyoneknowsmystatus.Iheardontheradiothatifyouhave HIVthenyouwilldie.SoIdontwanttotellanyone,Imafraid.SoIprettymuchstay home,ifanyoneseesmetheywillsuspectIhaveHIV.Betterformetositinthe honai,lookingout,thangokeepmyhusbandcompanyathiswork...Myhusband knowsIamsick,butmaybeheonlythinksIhavearegularsickness....SowhenIam sickheforbidsmetohelphimclearrocksfromtheriver. Jebo,likemanyotherrespondents,hadanoveralllowunderstandingofHIV,despitethe regularencounterswithhealthpersonnel.Thelackofknowledgeencouragesself stigmatization.ODHAoftendonotknowfactsabouttransmissionorwhatARVdrugscando
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    StigmaandHIV/AIDSinHighlandsPapua

    forthem.Selfstigmatizationinturnleadstoalowerqualityoflife,andtoalifelived withoutrespectordignity. Manyofourrespondentsdescribedasituationofpartialdisclosure.Often,theODHAwas stronglysuspectedofhavingHIV.Buttherewerenopowerfulpublicfiguresstatingthis,and theirfamiliesweresupportive.Inthesecases,thenuclearfamilyandclosekinplayeda criticalroleinshieldingtherespondentfromdebilitatingdiscrimination,andtherespondent wasabletopretendtothewidercommunity.Thishelpedmanagegossip,oneofthemost importantsourcesofstigmatization.Alargenumberofrespondentsmadestatementslike this: If people have opinions about me and my status they havent yet said anything to my face.ButwhattheysaywhenIamnotthereIdonotknow.Maybetheytalkaboutme andmaybetheydont. WhenIfirstgotsick,Istayedinmyhouse,butIthoughtpeopleweretalking,whats Meonsickwith?ThenIwouldsayIvetakensomemedicineandtheywouldanswer withMeonbeforeyourbodywasskinnyandnowyourbodyisgoodagain.Ifeel certainthereareamongthemseveralwhoalreadyknowIamsick. About three or four times a month I have to stop work or school because I am sick. Usually,myteacherorfriendswillaskme,whyareyouso wanandsick?andIhave tolieIworkedhardinthemarketfrommorningtonight,Ididntgetenoughsleep,so Imsick. ExtremeStigmatizationandDisclosurebyPersonsinPositionsofPower Disclosurethatoccursbypeopleinpositionsofpowerorauthorityappearstobe particularlydamagingforanODHAsabilitytolivewithrespectanddignity.The discriminationandselfstigmatizationareoverwhelmingwhenmadepublicbyprominent people.Inonecase,achurchleadertoldthecommunityofapersonsstatuswith devastatingconsequences: CaseStudy Yohlua: 4 Iamhorriblytormentedinmysoul YohluaisayoungmanwhocontractedHIVwhileawayatpostsecondaryeducation outsideofPapua.Whenhereturnedhome,achurchleaderhadtoldeveryoneinhis communityofhisstatus.Yohluasaid:EveryoneinJimugimaandSiepketiknew aboutmystatus.Theirreactionwas,theyallrejectedmeandforbidmetolivethere. Afterthatnobodycametoseeusinourhouse,notpeoplefromourchurchandnot peoplefrommyfamily.Whenwemovedin,thepeoplewhowerelivingthereleft.I

    Allnamesandlocationshavebeenchangedinthisreporttoprotectanonymityofrespondents.

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    StigmaandHIV/AIDSinHighlandsPapua

    amhorriblytormentedinmysoul.Myparentsaskedforthepeopleinthechurchto prayformebuttheyrefusedtohelpus.ItwastheCatholicchurchgroupleaderwho toldeveryoneinthechurchthatIhadAIDS.Thenhetoldalltheclanleaders,so everyonewhowenttochurchknew.HesaidYohluahasAIDSsohecanteat,sleep, talk,shakehandswithanyofus.Iaskedthechurchgroupleadertoprayforme buttheydidntwantto.Ihavealreadyaskedthemforhelpthreetimesbutthey alwaysrefuse.SomyparentsandIsayitdoesntmatterbecauseGodisnotblind, Godwillbetheonewhowillhelpme. Awomanexperiencedsimilarlevelsofostracismwhenahealthcareworkerrevealedher statustoherhusbandandtothewidercommunity,asthecaseofTinashows: CaseStudy Tina:Heykids,dontplaynearher Tinasisawomaninhermidtwentieswhosehusbandabandonedheroneyearago whenhelearnedofherHIVpositivestatusthroughthehealthcareworkerwhotook herbloodtest.AccordingtoTina,thefirsttobetoldwasDr.Agenandthenthe sisterfromthenonprofitorganization,thenmantriHepudo,andthenothersknew too.Sofrommouthtomouththeinformationspreadandtheneverybodyknew. Tinahashadtolivewithherparents,butastheirhouseisverysmallshesleepsin thelivingroom.Whileherparentscareforhertheyarealsoimpatientwithher becausesherequiresspecialandexpensivefoods.Shehassomanysoresinher mouthshecannotchewsweetpotatoes,thestaplefood.Tinaisclearlyill,andhasa panoplyofmedicationsinthelivingroom.Herstatusiswellknowninthewider community.Theworstaretheneighbours,saysTina.Shewillsitoutsideandthe neighbourswillcomeoutoftheirhouseandstareather.Theywillthenshoothe childrenaway,heykids,dontplaynearher,theysay,orwhyareyoujustsitting there?sotheydontplayinfrontofmyhouse,itreallyhurtsmyfeelings.Tinasays thehealthworkerwhotookherbloodtestwasfromthesameclanasher.Hehelped herchooseherfoodsandgaveadvice.Buthemakesitreallyclearhedoesntcare anythingaboutme.Whenhecomesbyhejustlooksatmewithhalfaneye,likeheis afraidtocomeintomyhouseandtalktome.Itmakesmeverysad...SoIsitinthe houseonly,ifIeverleavethehousepeoplefromaroundthehouseareafraidtosee me,theyrunawayfromme.IfIamjustsittingherethehealthworkerwalksby,he justignoresme.Helookedaftermeattheclinic,butnowhejustgivesmetheshifty eye. Twootherrespondentssaidtheirhealthcareworkertoldothersabouttheirstatus.This appearstobeasignificantproblem.AsoneODHAnoted,
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    StigmaandHIV/AIDSinHighlandsPapua

    Indeed,Itriedtokeepitasecret,butthemantritoldeveryoneinthecommunity.

    Insum,disclosureisfarandawaythemostimportantissueaffectingexperiencesofstigma forODHAinhighlandsPapua.Fearoflargeamountsofdiscriminationfromextendedkin andcommunityappearwelljustified.ODHAalsofeardiscriminationwhenpersonsof influencesuchashealthcareworkersorreligiousleaderstellthewidercommunity. Remainingembeddedinsocialnetworksisaprimaryconcern.ResearcherAndreasGoo arguesinhighlandsPapuathatclosefamilyisthesafestplacetoconfidestatus.Hisresearch suggestsfamilymemberswillofferempathy,provideaplacetosleepandlive,shareclothes, dishesandbathingfacilities,andpraytogether.FamilycanalsoprotecttheODHAfrom overtstigmatization.WhenthefamilyfeelsempathyandacceptstheODHAsstatus,such supportappearstobethenorm.However,ODHAcannotautomaticallyexpectfamily support.

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    StigmaandHIV/AIDSinHighlandsPapua

    6.StigmaandCulture InPapua,culturalideasaboutstigmaarecentredaroundthreemajorthemes:illness;the body;andsocialbelonging.Thesevaluesareintertwined,andaffecthowODHAandthe widercommunityrespondtoHIVandtoAIDS. CulturalIdeasaboutIllness Fearofdisclosureisrootedinculturalresponsestoepidemicdiseases.Allculturalgroupswe interviewedagreethatAIDSshouldbetreatedandunderstoodassimilartootherepidemic diseases.Forseriousillness,inthepastcompletewithdrawalwasthenorm.Theperson oftenselfsecludes,livesaloneintheforest,andifthediseaseissaidtobecontagiousfood isplacedatadistancefromthehutandthepersonhasnosocialcontact.Boththe communityandtheindividualexpectthepersontoremovethemselvesfromsocial relations.Forexample,oneLanirespondentnoted: In the culture of our village, a person who gets sick is a person you dont sit next to, eat with, work with or live with. They have to build a house just for this sick person all by themselves far away from the village. They build a house in the middle of the forestandtherethesickpersonlives. PeopletalkaboutAIDSprimarilywithinexistingpatternsofresponsestodangerous sickness.Eachhighlandstribehasspecificexplanationsandunderstandingsofepidemic illness,andeachexplainsresponsesinculturalterms. ResearcherIbrahimPeyongivestheexampleofhowtheYalitribeviewAIDS.Amongthe Yali,AIDSisassociatedwithleprosy,duetothesimilaritywithlargeoozing,opensoresand disfiguringskinconditions.Thepatientisisolatedasthecommunityfearsthesickperson harboursanepidemicthatwilleliminatethepopulation.Thepersonisisolatedintheforest, theonlyonewhocanvisitisthedukun(indigenoushealer),whomaybeabletocurethe patient.Ifthepatientdiestheforesthomemustbeburned.Thedukunmustconductrituals toprotecttheclosefamilyofthedeadperson.AsresearcherIbrahimPeyonargues,there arewidespreadimplicationsofthisconcept,asitextendstopeoplewhodonotfeelableto bepartofcommunityobligations:Apersonwhoisseenasnotuseful,dirty,orwhohas committedwrongsmustberemovedfromthecommunityorrelationswiththatperson mustbebroken.AIDSfitswithinthiscategorybecausethroughtheirsufferingtheyget stigmatizedbythecommunity. AIDSisoftendescribedintermsthatreinforceculturalideasaboutillness,thebodyand socialexclusion.Onewomanwasheavilystigmatizedbyherhusband:

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    StigmaandHIV/AIDSinHighlandsPapua

    AIDSforusisliketheincesttaboo.SowhereverIgomyhusbandsayswatlasin,or thatIamalreadydead.Whatisthiswataslin?AmItheenemyorsomething?DidI dosomethingwrong? Shegoesontodescribehowherownfamilycaredforherbutherhusbandsdidnot, becausehewasnowinapositiontoignoreoldertribalhierarchies: Mybrothertookmetothehealthcenter,cookedpigforme,chicken,goodfood.But whatistheproblemonmyhusbandsside?Igetnothingfromhimorhisfamily.Iam thechildofawarleader.Inthepast,hisfamilywasbelowus.Butnowwehavethe governmentandthechurchandsonowtheythinktheyaregreat,right? Thisexampleshowsthatclanaffiliationscanaffecthowapersonrespondstorequestsfor helpfromanODHA.SpousesandinlawsmaybequickertodiscriminateagainstanODHA thananODHAssiblingorparent. CulturalIdeasabouttheBody AIDSisalsoexplainedintermsofculturalideasaboutthebodyandillness.Highlandtribes understandthebodyintermswhichoftendifferfrombiomedicalexplanations.These culturalexplanationscanaffecthowpeopleunderstandHIV.Thefollowingexampleshows howexplanationsofcontagionmaynotfitwiththemodelsgivenbyhealthworkers: AnolderbrotherexplainshisyoungersistersHIV,sheissicklikethisbecausesince theageofthirteen,shesleepswithmen,butYoyaswombwasunformed,still young,andsomalespermenteredherwombbutitpluggedupherwombandasa resultitwontopenup,andthespermstayedintherealongtimeandgaveher cancer.Igotcheckedattheclinic,thenursesaidIhadcancer,shesaid.Her brotherinterjected,sheisshortofbloodbecauseshedoesntwanttoeat.She wantstoeatbutbecausethemalespermispluggedupinsideofher,foodwontstay inherproperly. ThisexplanationofHIVandhowitwastransmittedshowshowculturalexplanationscanbe thesourceofstigma.Highlandshealthcarestaffneedtobeawareoftherangeof explanationsthatcanexisttoexplaindisease.Theseexplanationscaninclude:blaming angryancestorsforwreakinghavocontheliving,negativesocialrelations,andindividuals withthepowerofwitchcraftorsorcery. Oneprominentexplanationinthehighlandsisthatwomenarethevectorfordisease.For example,onemanassociatedfeelingdirtyandbeingHIVpositivebecauseofcontagion throughhavingsexwithawoman. Ifeeldirtybecausethisdiseaseenteredme.Igotthisdiseasebecauseitcameinto methroughthedirtyplacewhereIhadsexwithaprostituteandIbelieveshewas

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    StigmaandHIV/AIDSinHighlandsPapua

    dirtytoo.ThenthedoctortoldmethatIhaveAIDSsoinsidemybodythediseaseis bearingfruit.So,mybody,itfeelsdirty. Womanasasourceofcontagionwasstronglyreflectedinmanyanswers,andacrossall tribalgroups.Womensbodies,inparticulartheirreproductiveorgans,arewidely understoodashavingpotentiallypollutingorpoisoningqualities.Whilesomewomen pinpointedtheirhusbandsasthesourceoftheirinfection,thecommunityismuchmore likelytoblamethewomanthanherhusband.Asaresult,highlandpeoplesoftenblamethe transmissionofHIVonsexworkersorstreetsexworkers,ratherthanonthemenwhouse theservicesofthesewomen. Culturalideasaboutillness,thebody,andcontagionstronglyaffecthowhighlandpeoples respondtoODHA.Biomedicalknowledgeappearstobelessimportanttounderstanding thanlongstandingideasaboutinfection,contagion,andostracism.Healthcareworkers needtobetrainedtounderstandthemultiplewaysculturalvaluescandiscriminateagainst ODHA. CultureasProtective Atthesametimethatculturecanpromoteostracism,researcherAndreasGooarguesthat culturalvaluesaboutfamilyandclansupportcanprotecttheODHA,helpingkeepsuspicions andpotentialsocialisolationifnotatbay,atleastsilenced.Thefollowingexampledescribes howaparticularlybelligerentfatherprotectshisdaughter: CaseStudyDelay:WhoisBraveEnoughtoPickonMyDaughter? DelayisayoungwomanwithfullblownAIDS.Sheistakingmedicationsbutisveryill. Herstatusiswidelysuspected,andmanywishtodiscriminateagainsther.Whenshe metwithresearchers,herfatherinsistedonaccompanyingher,andcontinually interjectedabouttheworkhedoestokeephisdaughtersafe.AccordingtoDelays father,peopleseemydaughterandtheythinkshehasAIDS,andsothewholefamily feelsashamed.Ialwayssaidthattheywouldtalk,andtheydo,buttheyhadbetternot comenearher.Iftheytryandmaketrouble,theyhadbetterrememberthatIamthe headofawaralliance.Iwillkillthatperson.Myfatherbeforemewasawaralliance head,andsoamI.IftheytryandmaketroublewithmydaughterIwillmakewarwith them.Delaysitsathomealldaylong.Sheisverythin,andhasmultiplesoresonher skin,andrequiresspecialfoodandcare.Herfamilyprovidesthisforher.Herfatherisa healthworkerandhasaccesstomedicines.Hisprimaryjob,though,istodefendher againstthecommunity:Thereisnodiscrimination,hesaid,becauseIsayso.Who isgoingtobebravetopickonmydaughter?IamnurseMr.Hadigo,Iamasub commandantintheindependencegroupOPMandsopeoplearenotbravetopickon

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    mydaughter.Noonehitsmyfamily.IamamemberoftheWestPapuaAssociation.I amawellknownpersonaroundhere.Whoisbraveenoughtohitmychild? ItcanalsobeparticularlybeneficialforanODHAifahealthworkerisaclosefamilymember. Severalrespondentsnotedthattheyfelttrulycaredforwithdoublesupportfromasingle person: Myolderbrother(kakak)isamantriandhealwayshelpsmeandgivesmeadvice,he saidImamantriandIoftenhelpotherpeople,sowhyyou,myrelative,whywont youchange?Youhavetochangeyourbehavior.ButIdidntlistentohim. Anotherrespondentdescribedhowherhusbandsfamilyalwayssupportedherinallways: Ifitwastimetoeat,myhusbandsoldersisteralwayspreparedfood,andmy husbandsbrotheralsohelped.WiththemhelpingIneverhadproblemswithfood andtheynevergotangry.Aslongaswestayednearmyhusbandsfamily,usually theytookcareofallproblemswithinmyfamilyandthehousehold. Insum,culturalvaluesinthehighlandsarecomplex.ResponsestoODHAarerootedinlong standingideasaboutcontagionandepidemics.Familyisessentialtoprovidingsomedegree ofprotectiontoODHAwithoutclosefamily,culturalvaluesofostracismand discriminationcanhaveadevastatingimpact.

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    StigmaandHIV/AIDSinHighlandsPapua

    6. Gender,SocialWorth,andStigma Oneofthekeygoalsofthisstudywastolookatgenderedexperiencesofstigma.Evidence hasshownthatwomenareadverselyaffectedbystigmainepidemicareasinotherpartsof theworld.Womendisplayageneralunwillingnesstodisclosetheirstatusforfearofbeing harmedorscorned(Bondetal.2002).Womenfearbeingshunnedbytheirhusbandsand familyupondisclosureoftheirHIVpositivestatus.Thecontrastbetweenmenandwomenis important:studieshaveshownmenaremorelikelytosharetheirHIVstatuswiththeir wivesintheexpectationofasupportiveresponse,whereaswomenareafraidtodisclosefor fearthatthismightprecipitatedivorce,violence,orthattheirhusbandswouldthentell others(Bondetal.2002:353;Adejiyugbeetal.2004). Theresultsofourstudysuggestthatmenandwomenexperiencestigmaanddiscrimination indifferentways.Byandlarge,bothmenandwomenwereafraidtodisclosetheirstatus, felttheirstatuswastheirfaultandfeltashamedoftheirstatus.However,Table2showsthe resultsofkeyquestionsaboutstigmaseffectsonselfstigmatization,thatis,onfeelingsof selfworthandpersonalwellbeing.
    Table2.Stronglyarticulatedstatementsofselfstigmatization,bygender

    Stronglyarticulatedstatementsofselfstigmatization, bygender SelfStigmatization Men (n=13) 11(84%) 9(69%) 8(62%) 4(31%) 3(23%) Women (n=15) 10(66%) 12(80%) 13(87%) 12(80%) 10(66%)

    Veryafraidtodisclose status Feelstrongly theirstatus istheir fault Feelstrongly ashamed ofthemselves Feelstrongly dirtyorunworthy Stronglydonotfeelrespected or needed

    Table2showssignificantdifferencesinhowmenandwomenfeltaboutthemselves.While bothmenandwomenwerequicktoblamethemselvesfortheirHIVpositivestatus,and wereafraidtotellothers,menwerefarlesslikelytohavenegativefeelingsabout themselves.Mendidnotstronglyarticulatefeelingsofbeingdirty,andtheyalso


    26

    StigmaandHIV/AIDSinHighlandsPapua

    continuedtofeelrespectedandneededintheircommunity.Incontrast,womenaremore likelythanmentosaytheyfeeldirty,unworthy,anddisrespected. Dominantthemesforbothgenderswasfeelingworthwhileasapersonbyfulfillingtheir socialrolesinthefamily,withregardstofood,responsibilities,children,marriage obligations,workandfinancialcontributions.Onemanputitsuccinctly: I dont feel respected, I have an education but I feel I am not useful anymore becauseIhavegotthisdisease. ThesefeelingsandconcernsappeartoaffecthowmenandwomenrespondtoVCTand medications,asthefollowingsectionsshow. MensResponses:SocialStatusistheMostImportantThing Menappeartohavelessdifficultyhidingtheircondition,appeartospendlesstimeworrying aboutkeepingupappearances,andappeartohavetodolesstomaintaintheirsenseof socialworth.Asonerespondentnoted,hisworkandhissocialpositionprotectedhim: ThepeoplebelieveinmebecauseIamthevillageheadandthevillageisworkingthe sameasusual.ThepeoplealwaysdowhatIaskthemto.Becausetheychosemetobe thevillageheadthereisnochancetheywillabandonmenow. Mentalkinawaythatsuggeststheywerechoosingtomakechangestotheirlife.Another respondentdescribeddecisionsintermsofpersonalchoice: SinceIgotsickIsteppeddownfrommyjobaschurchcommitteememberbecauseI behavedbadly.Ihavestoppedmycommitteework.ButIstilldotheotherchurch worksuchasgatheringmoneyorpigsforthechurchIstoppedworkingonthechurch committeeonmyowninitiative. Somemenalsodescribedareadywillingnesstogotothehospitalorclinicandobtain medications.Theyappearedtobemorecomfortableusinghealthservicestogettested,and appeartobewillingtolistentohealthcareworkerssuggestionsonhowtoadheretoARVs: IknewinmyheartIshouldgetchecked,andonceIfoundoutImadeadecisionright awaytogotothehospitalandgetmedications. IsharedmyHIVpositivestatuswiththereligiousassistantsohecouldhelpmechoose therightpath.HeurgedmetotakethemedicationsasdirectedsoIcangetbetter.So Ihavebeenfollowingtheroutineuntilnow,withoutanyproblems.ForaslongasI havebeentakingthemedicationsattheclinic,Ihaventhadanyproblems.

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    StigmaandHIV/AIDSinHighlandsPapua

    However,manymoremenappeartoavoidseekinghelpfromVCTcentres.Thismaybe linkedtostatus.Menaremorelikelytohideandwithdrawinremotelocations.However, menarelikelytohavesocialsupportforthislevelofwithdrawal.Menhavemoredeveloped networksinthewidercommunityandthereforehavemoreoptions,butalsomoretoloseif everyoneknows. Women:SocialBelongingistheMostImportantThing Womenappearlessabletocontainthenegativeeffectsofdisclosurethanmen.When womenwerethetargetsofdiscrimination,theywerereallytargeted.Ourresultsshow womentakegreatcaretoprotectthemselvesfrombeingstigmatized,andtheydoso throughcarefulattentiontosecrecy.ResearcherGerdhaNumberysituateswomens determinationtoprotectthemselvesandtoremainsociallyconnectedfromthecontextof familyandculture. Numberyarguesfirstweneedtounderstandwomensresponsesinthecontextofclose family.WomensmaterialworthaffectshowwomenrespondtotheirHIVpositivestatus. Thefamilyisconcernedwiththegaintheymaygetfromwomenthroughbrideprice paymentsobtainedwhenshemarries.Thefamilyisconcernedwiththeirreputation,and withwantingayoungwomantoappeartobeadesirablemate.Thusthereisastrongsocial imperativetobehaveandappearnormalinordertoavoidjudgmentsorproblems. Womensconcernsaboutrespectarestronglytiedtotheirroleaspotentialproviderof brideprice.Severalwomensaidadecreaseinphysicalwellbeingwasathreattogood relationsinthefamily.Beingcriticizedfortheirweakbodiesmadethemfeelnotworthy. Thefollowingthreestatementsbythreeseparatewomenshowthestrengthofthistheme: Sonowmyfamilyismad,becausetheysaytomeyouareourcapital,nowthatyouare sickallthetime,ourinvestmentisnotpayingoff. Mybrothersays,Whyareyoualwayssicklikethis?yousicklikethis,itsourloss, wecouldloseourinvestment. ForfourmonthsIhavenotbeentakingmedicines.WhenIdonttakethemedication mybodygetsthin.ImnottakingmedicinesoIgotthinveryquickly,andIhaveno desiretoeat.Ialsocantworkinthegardenmuch,becauseIgettiredveryquickly.I donthavemoneytobuymedicine.Mybrothersaystheresmedicinebutits expensive,fivedosesisonemillionrupiah($US100).Iwanttotakemedicineagain, butitstooexpensive.Somybodyisgettingthinagain,andIcantworkwell.And oftenmybrothersays,Ayaahourinvestmentisallgone,right?Accordingtomy brother,inDaniculturewebelievethewomanisthefamilysfuturecapital.
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    StigmaandHIV/AIDSinHighlandsPapua

    Second,Numberysuggestswomenchoosesecrecyasthebestwaytoavoidstigma.If womensbehaviourdeviatesfromthenorm,theyarelikelytoremainclosedmouthabout theirstatus.Theyarealsolikelytokeepsecretsiftheirbehaviourisperceivedasdeviating fromthenormevenitisnot.Gossipisamajorconcern: EverythingisasecretbecauseinLaniculture,peopletalkbehindotherpeoplesbacks. Theywillsaydontmeetupwiththatperson,dontgooutwithhim,donteathisfood, dontsleepwithhim.Thentheywillgoandspreadthestoryfarandwide. Ourresultsshowthatawomanwhodoesnotdeviatefromthenormismorelikelyto confideinherhusbandthanwomenwhofeartheirreputationshavebeendamaged. Womenalsokeepsecretsbecausetheywanttoavoidjudgmentsalongreligiouslines. Womenwhoseparentsorhusbandswereinvolvedinchurchmatterswereextremely concernedtokeepsecrets.Womenalsokeepsecretstoavoidinvolvingherfamilyandher husbandsfamilyinnegotiationsaroundculturalsanctionse.g.paymentoffinesfor makingsomeonesick.Andwomenkeepsecretsbecausetheywanttoavoidpunishments, inparticularphysicalviolenceatthehandsoftheirhusbandsortheirfathers. Last,Numberyargueswomenrespondbychoosingsecrecybecausetheywanttoavoid ostracismbythefamily.Ostracismcanhappenwhenafamilyisconcernedtomaintaintheir goodname,especiallyinchurchcircles.Ifawomangoesalonetotheclinicorthehospital andisseenshemaybeostracized:thewomanisshunned,limitedinhermovements,and mocked. Asaresult,thewomenweinterviewedareexpertsathidingtheirstatus.Whenwomen revealtheirstatus,theytendtodosotopersonswhoaresafeinstructuralterms.For example,wefoundthatwomanonlyrevealedtheirstatustotheirboyfriendorhusbandif theyhadalreadypaidthebridepricetoherfamily.Iftheytoldbeforebridepricewaspaid, theywouldriskbanishmentbyherhusband,sotheykeptthisinformationasecret. Womenalsodrawonastrongdeterminationtoremainactive,contributingmembersof society.Womenworkedhardtomaintaintheirsecrets.Thefollowingthreequotesshow thisstrongpattern: Theyallsuspectsomething,soIhavechangedmybehaviorsoIdontlosemy husband.BeforeIgotsick,ifIdidsomethingwrongIalwaysranawaytomymoms housebutIdontdothatanymore.Now,IamsickbutItryreallyhardtoworkat sellingstuffsothatmoneycancomein. Imafraid,iftheyknow,theywontwanttolivewithme,theywontwanttoeatmy leftoverfood.Becauseofthis,IdontwantanyonetoknowIhaveHIV.Sothat
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    peopledontsuspectme,Ihavetoactasthougheverythingisnormal.Ieatthesame asnormalwithmychildrenandmysiblings,Iworkinthegardenlikenormal,Isellin themarket,justlikeregularhealthypeople.Inthehouse,myhusbandtreatsmelike normal.Ieatleftoverfoodlikeeveryoneelse,wesleeptogether,Ibreastfeedmy child. IfIfeelsick,Ihideit,ifIamworkingbytheriverfrommorningtonight.Butwhenit isnoonIamalreadytired,myheadisdizzy,Iwanttosleep,Icanttellanyone becausehewillgetmad,soIhavetosaytomyhusbandlikethis,Ayoohusband,I wanttogoandbuysomevegetables,orIwanttogoandcleansomeclothes.Then hesaysIcango,IgetpermissionandthenIgohomeandrest. WomenonARVsmaintainsecrecyabouttheirdrugregimeninquitespecificways.Manyof themobtainmedicationssecretly,bydealingwithNGOswhopickupandhandout medicinesforwomen,insteadofgoingdirectlytohospital.Severalwomensaidthatifthey hadtogotothehospitalfordrugstheywouldnotgo.NGOsallowwomentoactually successfullybeonARVs.Inordertoaccessthemedicines,womenwilllietohusbandsabout wheretheyaregoing.Theyavoidpeopletheyknowwhentheyareinplaceswheretheir statusmightberevealedbytheirpresencethere(e.g.atapharmacy).Theyhide medicationsinasafe,personalspacewithinthehome,andtakethemsecretlywhen everyoneisout.Theydoallofthesethingstomaintaintheirsocialroleasvaluedmembers oftheirfamilyandcommunity. GenderandHealthCareAccess:MenCanGetHelpMoreEasily Ourresultsshowmenandwomendonotrespondtotestingandmedicationsinthesame way.Table3showsusageofhealthcareservicesforHIVtestingbygenderinthetownof Wamena.WhilewithintheprovinceofPapuathenumbersofmenandwomenwhotestas HIVpositiveareroughlyequal,inthehighlands,wefindastrongpattern:moremengetHIV teststhanwomen. Table3.GenderofpatientsundergoingHIVtestingatthreeWamenatest locations,cumulativeuptoMay2010 Genderof Client Male Female Childunder 14 Total
    30

    Number Tested 476 305 19 800

    Percentageof thosetested 60% 38% 2% 100%

    StigmaandHIV/AIDSinHighlandsPapua

    Table4showsthatmorementestpositivethanwomenbecausemoremenaregetting testedthanwomen.However,Tables3and4identifyasignificantgapinserviceprovision: therearesignificantnumbersofHIVpositivewomenwhoarenotseekingouttesting. Table4.GenderofclientswhoqualifyforARVtherapiesinWamena,cumulative uptoMay2010 Genderof Client Number Percentageof qualifyingfor those ARV qualifyingfor ARV 334 62% 195 36% 10 2% 539 100%

    Male Female Childunder 14 Total

    DespitethefactthatmoremenareeligibleforARVtherapies,wefindinTable5that womenappearmorelikelytotakeupARVtherapiesthanmen. Table5.GenderofpersonswhohaveeverstartedacourseofARVinWamena,up toMay2010 Genderof ARV adherent Male Female Childunder 14 Total Numberon ARV 44 41 0 85 Percentageof thoseonARV 52% 48% 0% 100%

    AlmosthalfofthepeopleonARVarewomeneventhoughfewerofthemhavebeentested thanmen.Lackofaccesstotherapiesmaypartiallyexplaingenderdifferences.Menare morelikelytobemobileandcanvisitdistanttownswithoutsuspicion,whereaswomenmay findtheyhavelessfreedomofmovementandthereforelesschancetoseekouttesting. Mobiletestingserviceswouldseemtobeapriorityifthehealthsectorwishestoprovide equalaccesstotestingforeveryone.

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    8.HealthCareandStigma:Race,Values,andRespect Accesstoadequatecounselling,testing,drugsandsupportforODHAacrossthehighlandsis dismal.Mostoftheregionremainswithoutservice.IntheareaswherethereareVCTsand ARVsavailable,uptakeofthoseservicesremainslow.AlthoughtheIndonesiangovernment boastsanARVuptakeof30%ofHIVpositivepersonsinthecountry,inthehighlandsonly aroundsixpercentofknownODHAappeartoaccessARVs.Thisnumberisshockinglylow, andsuggestsmajorproblemswithhealthserviceanddelivery. Thetypeofservicesofferedinthehighlandsregionappearstobeasignificantbarrierto access.AnimportantstudybyMorin(2007)outlinedproblemswithVCTservicesanduptake inSorong,Papua.Inparticular,Morinnotedfearofstigmawasasignificantproblem,and lackofinformationaboutVCTalsoimpededuptake.However,theseconcernsremain largelyunaddressedinhighlandsPapuain2010.ODHAcontinuetodisplayoveralllowlevels ofknowledgeandawarenessofHIVandtheservicesavailablethroughVCTs.However,our respondentsalsonotedspecificproblemswiththequalityofservicesthatwereofferedto them.Theyidentifiedthreekeyconcerns:race,stigmatizationbyhealthworkers,and problemswithconfidentiality. Race Thevastmajorityofstaffinmajorhealthcentresfacilitiesaremigrants.Theyoftenpossess littleknowledgeofPapuancultureorvalues.Indigenousstaffdohaveaplaceproviding primaryhealthcareinruralhealthcentres,butmanyemployeesinVCTcentresarenot indigenous.PatientsoverwhelminglyvotewiththeirfeetwhenaclinicinWamenaopened itsdoorsin2007offering100%indigenousstaffservice(withtheexceptionofthe missionaryphysician),theywerefloodedwithpatients.Accordingtonumerous respondents,indigenouspatientsfarpreferreceivingtreatmentfromindigenousstaff. Indigenoushealthcareworkersfeltthatthelackofunderstandingandempathyofmigrant workersmeanttheywouldnotrespectconfidentiality.Nosa,aPapuanwomanwhoisthe casemanagerforaVCT,andadeeplyempatheticperson,feelsthatwhenanonPapuanis offeringhelp,byandlargePapuanswontaccepttheservice: Papuanswillsay,BetterInotgettreatmentthere,becausetheymightkillme.I dontwanttobecaredforunderthem,betterjustdie.Andthentheyseekcare fromthepastororministerinstead,askingforthemtoprayforthem,sotheycandie inpeace.
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    StigmaandHIV/AIDSinHighlandsPapua

    Values OurresearchshowsthatsomehealthcareworkersactivelystigmatizepatientswhoareHIV positive.Weasked15healthcareworkerswhoworkinVCTorinrelatedhealthcare activitiesinWamenatocompleteastigmascale,inwhichtheywereaskedtorespondto statementsaboutHIVpositivepersons.AsTable6shows,somehealthcareworkers stronglystigmatizeODHA. Table6:NumberofhealthcareworkersinWamenawhoagreewithstigmatizing statementsaboutHIVpositivepersons StigmaStatementsaboutODHA 1. PeoplewhohaveHIV/AIDSare dirty 1. PeoplewhohaveHIV/AIDS probablyfeelashamed 2. PeoplewhohaveHIV/AIDShave toacceptlimitationsbeing placedontheiractivities 3. Thebehaviourofpeoplewho 5 haveHIV/AIDSiswrongandthey willreceiveanappropriateform ofpunishment 4. PeoplewhohaveHIV/AIDS 3 shouldbeshunned SomehealthcareworkerswhohavereceivedVCTtrainingagreewithovertlydiscriminatory statementssuchasthatODHAaredirty,shouldbeshunned,andshouldreceivea punishment.Almostallworkersagreedwithmoresubtlystigmatizingstatements,suchas ODHAhavingtoacceptlimitsontheirbehaviourorassumingthatODHAwillfeelashamed oftheirstatus. Respect Athirdreasonforlowserviceusageistheissueofconfidentialityoftheclient.Optimally, voluntarycounsellingandtreatmentissupposedtohelpreducestigmabyallowingthe clienttokeephisorherstatussecret,ortocontrolhow,when,andtowhomthis informationisdisclosed.ThethreeCsconvenience,confidentialityandcredibilityare thecornerstoneofeffectiveresponsestoHIV(Angottietal.2009).UnlikeMorins2007
    33

    Agree Percent Disagree Percent Total Agree Disagree 3 25% 12 75% 15 (100%) 12 75% 3 25% 15 (100%) 15 (100%)

    13

    87%

    13%

    33%

    10

    66%

    15 (100%)

    25%

    12

    75%

    15 (100%)

    StigmaandHIV/AIDSinHighlandsPapua

    studyinSorongwhereVCTworkersappeartorespectconfidentiality,inhighlandsPapua, confidentialityisroutinelyviolated,asonerespondentnoted: Confidentiality?Itdoesntworkatall.Infact,itmightaswellnotexist. IninterviewswithVCTstaff,counsellorsandofficesupportstaffagreeitishardtomaintain confidentialityintheirclinicalpractice.Healthcareemployeesarewidelyseenaseagerto gossip.Someworkersarewillingtoacknowledgethattheyarenotverygoodatkeeping secrets. HealthworkerstendtolookbeyondthemselvestostructuralproblemswithVCTandARV services.Theyseeinconsistentrecordingsystems.Theyfeeltrainingfocusesongetting peopleonmedicationsratherthanteachingrespectfortheirrights.TheyfeelPapuan practicesandconcernsaredifferentthantherestofIndonesiabutmaterialsfromIndonesia arewhatarepresentedintrainingworkshops.DealingwithcomplexPapuanvaluesisnot taughtinworkshops.Instead,thestafflearnaboutirrelevantcasestudiesfromotherparts ofIndonesiasuchashowtodealwithintravenousdrugusercases,youthcarryingknives, andclientsattemptingtoassaultcounsellors.Asonefrustratedemployeesaid: HereinPapuawegetPapuanpeoplewhogaspImgoingtodieafterhearingthey areHIVpositive.Thentheyleaveandweneverseethemagain.Wehavedifferent problemsherethantherestofIndonesia. TheyalsofeelfrustratedwiththestandardoftryingtovisitanODHAshometooversee foodandcarewithinthefamily,becausethisviolatesculturalstandardsofsecrecy.They hearpatientscomplainthattheyhaveHIVbutstillhavetopayfordrugs.Theyhearpatients complainpharmaciesareexpensive,andarerunbydoctorsfromthehospitalforalucrative privatebusiness. Last,healthworkerssaythatODHApreferservicesbyNGOstoservicesathospitalsor clinics.NGOsandclinicsrunbyindigenouspeople,whichareusedandtrusted,shouldbe seenasavaluableinitiative.Forwomeninparticular,whenNGOsprovideARVsindiscreet locationsinarespectfulmanner,itallowsthemtoactuallybeonthedrugs.NGOsoffer womenandmenprotectionfromthestigmatizingpracticesofhealthworkers,andfromthe potentialstigmaofbeingseenatthehospitalorclinic.

    34

    StigmaandHIV/AIDSinHighlandsPapua

    9.ConclusionandRecommendations ThisreporthasshownsignificantchallengesexisttoODHAqualityoflifeinhighlandsPapua. Stigmaanddiscriminationarerife,andincludeselfstigmatization,socialostracism, institutionalizedstigma,andstructuralinequities.StigmastronglyaffectshowODHAview theirfamilies,theircommunities,andtheirhealthcareservices. Undevelopedorinadequateservices,racisthealthcare,stigmatizinghealthcareworkers, lackofinformation,andinadequatesupport:alllimittheabilityforpersonswhosuspect theyareHIVpositivetoobtaincare,testing,treatmentandsupport. LackofinformationaboutHIVandARVisasignificantproblem.ResearcherIbrahimPeyon notedthatPapuanshaveinternalizedalotofincorrectinformationthatpropels discrimination.Fearsaroundcontagionviatoilet,food,andclothesetcmakeithardto acknowledgeandacceptODHAaspartofsociallife,andforanODHAtoaccepthimor herself.AllofourresearchersnotedODHAsdeepconcernswithkeepingsecretsbecause socialrepercussionsatthelevelofclanorcommunitybasedonmisinformationcanbe brutal.Thereisalwaysaverystrongpossibilityofcharacterassassination. DevelopinginterventionstoallowODHAtoparticipateasvaluedmembersoftheir communityiskey.ResearchersCastroandFarmer(2005)andmanyothershaveshownthat stigmatizingpracticesdecreasewhenapersonhasregularaccesstoARVs.OfferingARVs canhelpreducestigma,butonlyifthehealthcareproviderrespectsthepatient,their culturalvalues,andtheirpersonalstrategiesforcoping.ARVscanwork,butonlyifanODHA isabletoorganizethemedicationsothatculturalpatternsofsecrecycanberespected.In highlandsPapua,genderedresponses,anoverwhelmingconcernwithsecrecy,anda fundamentalmistrustofhealthservicesarethethreemostimportantfactorsshapingODHA experiencesofstigmaanddiscrimination. Recommendations Acknowledgetheinadequatestructuralinterventionscurrentlyinplace.Place priorityonestablishingcare,supportandtreatmentservicesinhighriskregions, suchasthosewithindrivingorwalkingdistancetomaincentres. AcknowledgetheroleofreligiousleadersinpromotingstigmaagainstODHA. Developconcretemeasurestoprovideawarenesstrainingforreligiousleaders. Developconcretemeasurestoprovideawarenesstrainingformigranthealthcare staffabouttheimpactofethnicityonhowpatientsperceivecare.

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    StigmaandHIV/AIDSinHighlandsPapua

    AcknowledgeculturalfactorscanplayaroleinhowODHArespondtodiagnosis.In particular,strongvaluesaroundsecrecyandexistingstigmatizingpracticesare quicklydrawnuponinresponsestoadiagnosisofHIV.Ostracismisarecognized responsetoseriousillness. Providerespectfulcareandsupportservicesthatcanbeaccessedthroughpublicor NGOfacilities,ratherthantryingtoinvolvethefamilyofODHAorvisitODHAhomes tooverseedomesticconditions.Thiswillminimizecurrentfearsthatservicesaretoo invasive. PromoteODHAcarethroughpromotingtribalsolidarity.Ratherthanencouraginga globalmodelofconfidentialitythatemphasizestheindividual,encourage communicationaboutstigmafromtheperspectiveofclansurvivalandprosperity. Workwithsustainedstrongidentitiesalignedalongthelinesofclanandtribe. AcknowledgegenderdifferencesinhowwomenandmenrespondtoHIVdiagnosis andtreatment.ProvidemoreinformationaboutHIVtestingdirectedtowomen,and makeiteasierforwomentoaccesstesting. AcknowledgetheexcellentworkdonebyNGOsandclinicsthatprovidesupportin discreet,respectfulfashion.ProvidemoreassistancetoNGOsthatprovide treatment. Acknowledgethatmenappearlesslikelytotakeuptreatmentthanwomen.Assess newstrategiesforprovidingsupportandtreatmentformen. Acknowledgethepowerofhealthcareworkerstoincreasestigmathroughtheir behavioursandactions.Promoterespectmorefullyinhealthcareworkertraining. AcknowledgetheimportanceofethnicityinshapinghowPapuanODHArespondto theirHIVstatus.AcknowledgetheparticularconcernsofPapuansaroundreceiving treatmentbynonPapuanhealthcareworkers.EnsurethatPapuansaregiven priorityintrainingactivitiestoallowforamajorityofcare,supportandtreatment providerstobeindigenousPapuans. ProvidemorerewardsforhealthcareworkerswhoaresuccessfulintreatingODHA inordertoencouragethemtoremainintheirpositions. PromotetheuseofPapuaspecificmaterialsandcasestudiesintraining.Userealistic scenarios,suchascommunitybaseddiscrimination,religiousostracism,orindividual concernsaroundsecrecy. RespondtoverylowratesofHIVtestingandhighlevelsoffearbytrainingmore Papuanoutreachworkerstospreadinformationaboutcounsellingandtherapiesand howtoaccessthem. ProvidemoresupportfortheNGOsthatprovideexcellentcare,supportand treatmentforODHA.PromotemuchgreaterparticipationofPapuansinthecareand supportofODHA.

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    StigmaandHIV/AIDSinHighlandsPapua

    Table8:MapoftheProvinceofPapua

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