Exploring Experiences of Advocacy by People with Learning Disabilities of relatedinterest DeinstitutionalizationandPeoplewithIntellectualDisabilities InandOutofInstitutions EditedbyKelleyJohnsonandRannveigTraustadóttir ISBN1843101017 WomenWithIntellectualDisabilities FindingaPlaceintheWorld EditedbyRannveigTraustadóttirandKelleyJohnson ISBN1853028460 AdvocacyandLearningDisability EditedbyBarryGrayandRobinJackson ISBN1853029424 WorkingwithPeoplewithLearningDisabilities TheoryandPractice DavidThomasandHonorWoods ISBN1853029734 PersonCentredPlanningandCareManagementwithPeople withLearningDisabilities EditedbyPaulCambridgeandStevenCarnaby ISBN1843101319 HelpingPeoplewithaLearningDisabilityExploreChoice EveandNeilJackson IllustratedbyTimBaker ISBN1853026948 InclusiveResearchwithPeoplewithLearningDisabilities Past,PresentandFutures JanWalmsleyandKelleyJohnson ISBN184310061pb QualityofLifeandDisability AnApproachforCommunityPractitioners IvanBrownandRoyI.Brown ForewordbyAnnandRudTurnbull ISBN1843100053 GuidetoMentalHealthforFamiliesandCarersofPeople withIntellectualDisabilities GeraldinHolt,AnastasisGratsa,NickBouras,TeresaJoyce,MaryJaneSpiller andSteveHardy ISBN1843102773 Exploring Experiences of Advocacy by People with Learning Disabilities Testimonies of Resistance Edited by Duncan Mitchell, Rannveig Traustadóttir, Rohhss Chapman, Louise Townson, Nigel Ingham and Sue Ledger Jessica Kingsley Publishers London and Philadelphia TheeulogyforRoyLoomisbyShirleyDeaninChapter2isreproduced bypermissionofShirleyDean. Firstpublishedin2006 byJessicaKingsleyPublishers 116PentonvilleRoad LondonN19JB,UK and 400MarketStreet,Suite400 Philadelphia,PA19106,USA www.jkp.com Copyright©JessicaKingsleyPublishers2006 Therightofthecontributorstobeidentifiedasauthorsof thisworkhasbeenasserted bytheminaccordancewiththeCopyright,DesignsandPatentsAct1988. Allrightsreserved.Nopartof thispublicationmaybereproducedinanymaterialform (includingphotocopyingorstoringitinanymediumbyelectronicmeansandwhether ornottransientlyorincidentallytosomeotheruseof thispublication)withoutthe writtenpermissionofthecopyrightownerexceptinaccordancewiththeprovisionsof theCopyright,DesignsandPatentsAct1988orunderthetermsofalicenceissuedby theCopyrightLicensingAgencyLtd,90TottenhamCourtRoad,London,England W1T4LP.Applicationsforthecopyrightowner’swrittenpermissiontoreproduceany partofthispublicationshouldbeaddressedtothepublisher. Warning:Thedoingofanunauthorisedactinrelationtoacopyrightworkmayresult inbothacivilclaimfordamagesandcriminalprosecution. LibraryofCongressCataloginginPublicationData ACIPcatalogrecordforthisbookisavailablefromtheLibraryofCongress BritishLibraryCataloguinginPublicationData ACIPcataloguerecordforthisbookisavailablefromtheBritishLibrary ISBN-13:9781843103592 ISBN-10:1843103591 ISBNpdfeBook:1846425115 PrintedandboundinGreatBritainby AthenaeumPress,Gateshead,TyneandWear Contents 1. Introduction 7 DuncanMitchell,ManchesterMetropolitanUniversity,UK Part I: Personal Accounts of Advocacy and Resistance 11 2. AdvocacyasResistance:SpeakingUpasaWayof FightingBack 13 DorothyAtkinson,TheOpenUniversity,UK,MabelCooperandGloriaFerris, LondonConsultativeGroup,UK 3. RestrictionandResistance:TheExperienceof LifeonaLocked WardforPeoplewithLearningDisabilities 20 KatherineOwen,TheOpenUniversity,UK 4. ‘IWouldNeverWalk,Talk,SitorStand!’TheGirlontheTricycle 27 MarjorieChappell,independentwriterandspeaker,withDuncanMitchell 5. TwoPioneersof Self-advocacy:RayLoomisandTomHoulihan 37 PaulWilliams,UniversityofReading,UK 6. ‘I’veHadEnoughof theEverydayThing’:KarenSpencer’s LifeStory 42 KarenSpencer,CentralEnglandPeopleFirst,UK,withJanWalmsley, TheOpenUniversity,UK 7. ResilienceandResistanceintheLifeHistoriesof ThreeWomen withLearningDifficultiesinIceland 54 GudrúnStefánsdóttir,IcelandUniversityofEducation,andRannveig Traustadóttir,UniversityofIceland,Reykjavik 8. Songsof Resistance 68 SueLedger,TheOpenUniversity,UK,andLindyShufflebotham,YarrowHousing,UK Part II: Speaking for Ourselves: Accounts of Self-advocacy in Action 91 9. MyLife,MyChoices 93 PaulSavage,TinaWilkinsonandCarlWorth,SpeakingUpforAction,UK 10. ‘WhatTheyWant–Yes,ButWhatWeWant–BuggerUs!’ 100 AndyDocherty,ElizabethHarkness,MalcolmEardley,LouiseTownson, andRohhssChapman,CarlislePeopleFirst,UK 11. TheLifeof aGroupandaPersonalStory:Experiencesfrom HuddersfieldPeopleFirst 108 JeremyHoy,DriesCautrelsandDanGoodley,UniversityofSheffield,UK, withHuddersfieldPeopleFirst,UK Part III: Alliances with Others 117 12. FiresBurning:Advocacy,CampingandChildrenwithLearning DisabilitiesinOntario,1950–1990 119 JessaChupik,McMasterUniversity,Ontario,Canada 13. ResistanceinMencap’sHistory 128 LizTilley,TheOpenUniversity,UK 14. OneMan’sDreamthatContinuestoInspireOthers 142 HeatherCadbury,TeddingtonAreaReminiscenceGroup,UK 15. MaureenOswinandthe‘ForgottenChildren’of theLong-stay Wards:ResearchasResistance 153 SheenaRolphandDorothyAtkinson,TheOpenUniversity,UK 16. ResistanceandControl:MutiniesatBrentry 172 PeterCarpenter,BathandNorthEastSomersetPrimaryCareTrust,UK 17. TakingaStandAgainsttheOdds 179 KelleyJohnson,RMITUniversity,Melbourne,Australia Part IV: Alternative Interpretations: Reflections on Resistance 189 18. AssistanceandResistance:MakingSenseof Inter-warCaring Strategies 191 PamelaDale,UniversityofExeter,UK 19. StereotypedBehaviour:ResistancebyPeoplewithProfound LearningDifficulties 202 MelanieNind,UniversityofSouthampton,UK 20. Conclusion 212 DuncanMitchell THECONTRIBUTORS 216 SUBJECTINDEX 221 AUTHORINDEX 224 1 Introduction Duncan Mitchell Thisbookexploreswaysinwhichpeoplewithlearningdifficultieshavespoken forthemselvesandresistedoppression.Byadoptinganapproachthatcombines the accounts of people with learning disabilities, workers in learning disability services and academics, the editors hope to promote debate about the way in whichdifferentstakeholdersinservicesrelatetoeachother.Mostofthechapters are drawn from experiences in the UK but accounts from Australia, Canada, IcelandandtheUSAbroadenthebook’sperspective,giving itaninternational flavour. ‘Testimoniesofresistance’formsthethemeofthebook.Thisispartlydueto thenatureofthestories,whichgiveexamplesofstruggleagainstprevailingideas andpractices.Itisalsoaclearattempttohighlighttheworknecessaryifpeople withlearningdisabilitiesaretocontinuetodevelopwaysofdirectingtheirown lives and playing a full part in their communities. The editors also wanted to encourage the contributors to consider the positive part they have played in changing services. They present to the reader an active and assertive group of peoplethatcountersthepassiveimageofpeoplewithlearningdisabilitiesthatis sooftenportrayed. Asaseriesofpersonalaccountscombinedwithsomeacademicreflectionon thesubjectoflearningdisabilities,thebookaddstotheliteratureoflifehistory, biographyandexperienceoflearningdifficulty.Init,aperiodofcontemporary history is charted in which people with learning difficulties have increasingly begun tospeak forthemselves.Thecontribution of families,carersand profes- sionals in supporting change is also recognized, as is thefactthat, while many oppressedgroupshavespokenforthemselvesformanyyearsandhencebeenable 7 8 / EXPLORINGEXPERIENCESOFADVOCACY toinfluenceothersandshapepolicy,peoplewithlearningdifficultieshavehad lessopportunitytodothis. Theorigins of thisbook areintheworkof theSocialHistoryof Learning DisabilityGroupbasedattheOpenUniversity.Thisgroupbringstogetheraca- demics,peoplewithlearningdisabilities,serviceprovidersandotherinterested peopletoexplorethepastanditsinfluenceonthepresentandfuture.Thegroup has addressed key issues in the history of learning disabilities and has been widelyacclaimedforitsapproachofworkingwithpeoplewithlearningdisabili- tiesandintegratingthestoriesofdifferentindividualswithvaryingbackgrounds. Thegroup’sconferenceshaveprovidedaforuminwhichtheeditorshavemetto drawtogethertheirwork.Unsurprisinglygiventheemphasisoftheconferences mostofthepublishedworkhasexplicitlybeenrelatedtothehistoryoflearning disability.However,someofthepaperspresentedattheconferenceshavetakena morecontemporaryapproachtothesubject.Thisislikelytohavebeenfortwo reasons.Inthefirstplace,whenpeopleareencouragedtotelltheirlifestoriesitis inevitablethatsomewilladdressaveryrecentperiod.Thisisnotonlythecase withpeopleintheirtwentiesandthirtiesbutalsomucholderpeoplewhohave preferredtoreflectonthelasttenyearsoftheirliferatherthantheirexperienceof previousdecades.Second,astheconferenceshavedevelopedtheyhavenaturally movedtowardscoveringdifferentareasandwhilesomeofthethemeshavebeen similartherehasbeenlessemphasisontheexperienceoflargeinstitutionsandfar moreonlifewithinordinarycommunities. Anumberofthepaperspresentedattheirconferencesformthebasisofthis book.Theauthorsseektoaddressthekeyissuesofadvocacyandself-advocacyin contemporaryservicesbypresentingpersonalstoriesofthewayinwhichpeople with learning disabilities and their supporters have resisted poor services, damagingattitudesandoppressivepractice.Severalissueshavebeenraisedinthe conferencesthatarepertinenttocurrentpolicyandpracticeinlearningdisability services. Prominent among these is the relationships between disabled and non-disabledpeople.Thereareexamplesofcomplexnegotiationbetweenpeople withlearningdifficultiesandstaffpaidtoworkwiththem,theirfamilies,friends and volunteer workers. Questions regarding the nature of employment and power are exposed within some stories as people have had to wrestle with dilemmasaboutwhethertoemployhelp,acceptitfrompeoplealreadyemployed orfromvolunteers. Thefoursectionsofthisbookstartwiththepersonalstoriesbeforemoving togroupaccounts,thenallianceswithothersandendingwithaseriesofreflec- tions and interpretations of resistance within learning disability services. Part I INTRODUCTION / 9 containspersonalaccountsofadvocacyandresistanceincludingabiographyof RayLoomisandTomHoulihan,twopioneersofself-advocacy.Thediscussionby GudrúnStefánsdóttirandRannveigTraustadóttirinChapter7oftheexperiences of women with learning disabilities in Iceland also provides an international flavour.InChapter8SueLedgerandLindyShufflebothamexamineaselectionof songsofresistancefromanumberofinstitutionsforpeoplewithlearningdisabil- ities in the UK; these demonstrate both resistance and the resilience of people living inlong-stayinstitutionsandtheauthorssuggestlinksbetweentheresis- tanceof peoplewithlearningdisabilitiesandthatof othersocialgroups. Part II, ‘Speaking for Ourselves: Accounts of Self-advocacy in Action’, containsthreechaptersthatreflectonthewaythatself-advocacyisdevelopingby givingspecificaccountsofself-advocacyinaction.Startingwiththeaccountby PaulSavage,TinaWilkinsonandCarlWorthof thewayinwhichtheSheffield SpeakingUpForActionGroup(SUFA)begananddevelopedfromaninitialidea tobecomingamatureorganizationemployingitsowndevelopmentworker,Part IIcontainsaccountsofseveraldifferentself-advocacyorganizations.Represent- ing areas within England as far apart as Carlisle and Southend, the accounts presentapictureof bothsimilaritiesanddifferencesof self-advocacyinaction. PartIII,‘AllianceswithOthers’,containssixaccounts.JessaChupikdescribes aparents’groupthatgrewfromasmallgroupofparentsinTorontotooneofthe largest and influential learning disability pressure groups in Canada. Elizabeth Tilley analyses the role of resistance within Mencap (a large British interest group),aswellastheexternalactivitiesofthegroupitself.Chapters14and15 arebiographiesof peoplewhohaveworkedinthefieldof learningdisabilities, andfinally,KelleyJohnsonoffersobservationsonthewayinwhichsomewomen inAustraliahavetakenastandagainstthesystemsthathavetriedtomanagetheir lives. PartIVtakesamorereflectiveviewofadvocacyandisdesignedtoprovoke thoughtaboutdifferentwaysoflookingatthesubject.PamelaDalere-examines caring strategies of the past by considering how people have been able to live within oppressive systems by conforming or resisting. Melanie Nind asks whetherpeoplewithprofoundlearningdifficultiesusebehavioursthatareoften seen as meaningless or harmful to gain some control and to resist unwelcome demandsandsituations. Theuseoflanguagehasbeen,andremains,hugelyimportanttopeoplewith learningdisabilitiesandisanongoingpoliticalissue.Termssuchas‘mentaldefi- ciency’,‘subnormality’and‘mentalhandicap’havebeenusedwidelyinthepast. Languagenotonlydescribescontemporaryviewsandconceptsofdifferencebut 10 / EXPLORINGEXPERIENCESOFADVOCACY alsocontributestoitsdevelopment.Thedilemmaforthoseof uswritingabout thepastiswhethertouselanguagefromtheperiodbeingdiscussedorwhetherto adoptcurrentterminologytoavoidoffenceandtohelpfosterapositiveimageof peoplewithlearningdisabilities.Thecompromiseisgenerallytoavoidconfusion byusinglanguagefromthepastindirectquotations,andwhenabsolutelyneces- saryforclarity,andtousemodernlanguageatallothertimes.Thisguidedoesnot helpwiththecurrentdebateaboutwhethertousetheterm‘learningdifficulty’,a term that is preferred by many people with learning difficulties in the UK, or ‘learningdisability’whichhasbecomethepreferredtermoftheUKGovernment and is widely used within services. The editors have avoided having to choose betweentheseoptionsbyleavingittotheauthorsofeachchaptertodecide.Asa result both terms appear in this volume. International comparisons further confusetheuseofterminologyanditmaythereforebehelpfultopointoutthat theuseoftheterms‘learningdifficulties’and‘learningdisabilities’intheUKis similar to theuse of ‘intellectual disabilities’ and ‘developmental disabilities’ in othercountries. Manypeoplewhohavebeenlabelledashavinglearningdisabilitieshavenot beenabletoleadordinarylives.Thisisbecauseoftheviewsofpeoplewhohave had thepowerto determine wherepeople withlearning disabilities live. Many peoplewithlearningdisabilitieshaveresistedtheviewsofothersbystrugglingto leadordinarylives.OnesuchpersonisMaryCoventry,whotestifiedtoherown resistanceataconferenceattheOpenUniversityin2001andwantedherstoryto beincludedinthisbook. I would like to talk about my work, hobbies and interests and my various achievements.IfeelthatIhaveworkedhardandachievedalotinthelastfew years.Ilivedathomewithmyfamilyfirstofall,butnowIlivemoreorless independentlyinagrouphome.IworkatthePeopleFirstofficeinCroydon onceafortnightonTuesdays,andIgotoMencapmeetingsinLondonwith PeopleFirst.Ienjoywritingpoetry,andmyotherhobbiesandinterestsare varied. They are knitting, crochet, tapestry, embroidery and collecting models and pictures of owls. I am interested in oasthouses, windmills and watermillsandIamknowledgeableaboutthingslikeflowersandplantsand thedifferentspeciesofowls.Ihavebeenonlotsofdifferentcollegecourses overtheyears.TheseincludemathsandEnglish.Ihavelotsoffriendsanda boyfriendcalledJohn. Marywantedthisstorytostandasitis,withoutexpansionorfurtherdetail.For Mary, as with many other people, this account illustrates the power of the ordinary.Ironicallythefighttoliveordinaryliveshasledtoanumber of quite extraordinarylifestories,someof whicharediscussedinthepagesthatfollow.