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“Agh! It’s Alive!” Science Fic4on, Disability and Discipline
DianeCarrReaderinMediaandCulturalStudies
UCLIOECCMUCLKnowledgeLab
Keynote.FirstUCLInterdisciplinaryConferenceonDisabilityDisabilitybetweenacademicandresearchprac<ce:breakingbarrierstowardsajustandequalworld-9thMay2018
Introduc4on MynameisDianeCarrandI’maReaderinMediaandCulturalstudies.Myspecialismisdigitalgamestudies.CurrentlyI’maCo-InvesCgatoronalarge,mulC-disciplinaryconsorCaprojectfortheAHRC-theD4Dproject(2016-2020)D4D-DisabilityandCommunity:Dis/engagement,Dis/enfranchisement,Dis/parityandDissent.TheD4DteamincludesarCsts,academics(e.g.mediastudies,anthropology,roboCcs)andtheatregroups.Therearesomeable-idenCfiedmembersoftheteam.TherestofusidenCfyasdisabled.Topreparefortoday’stalkIhavebeenreflecCngonwhatitmeanstoworkwithandcommittoaspecificmodelofdisability,whileengagingproducCvelywithalternaCveandemergentperspecCves(includingthoseoftheteamandtheprojectparCcipants).I’vebeenthinkingabouttheneedforanapproachthatstays‘live’–responsive,adapCveandyetcoherent.
The structure of this presenta4on
• IntroducetheD4Dprojectandsharethekeyterms,themesandprojectmethodology• Focusonaspecific‘work-stream’fromD4Dcalled‘PlayableBodies’• TalkaboutUnit1fromPlayableBodies,apieceofaudienceresearchthathastheworkingCtleof‘We’reWatchingYou’• Providesomebackgroundtothisresearchbyreviewingsomeofmypreviousworkongames,bodiesandscienceficCon.• Reflectontherelevanceoftheculturalmodelofdisability(SnyderandMitchell,2006)toD4Dasawhole,andtothisparCcularunitofwork.
D4D project design: On ‘disability’ and ‘community’
• D4D’sdesignwascollaboraCvelywork-shoppedoverseveralmonths.CommunityPartnersandacademicsfromarangeofdisciplineswereacCveinthedesignfromthestart.Theteamcametoagreethat:• Communityneedstobeunderstoodincontext,asco-constructedandperformed• ExisCngstructures,discoursesandpracCces(schools,workplaces,epistemologies,mediatexts)reify,posiConandperpetuatesocialgroupsinparCcularandsomeCmesproblemaCcways…• Yetthesecan(atleastpotenCally)becomesitesofcriCque,resistance,solidarityanddissent• ThereisdiversitywithincommuniCesandwithindisability• D4D’sdesignwasverymuchinfluencedbySuePorter’sworkondisability,creaCvemethodologiesandsocialchangeattheUniversityofBristol,aswellasMaryBrydon-Miller’sworkonethicsandparCcipatoryresearch.
• Workingfromthisframingof‘community’and‘disability’weidenCfiedkeythemes:agencyandvoice,power,allegianceandchange,andthebody.• WediscussedtheseinrelaConto:performance,play,culturalproducCon,embodimentandexperience,technology,representaConsandinsCtuCons.• Thesesharedconcernsfedintothedevelopmentofourresearchstrategy.• Ourmethodologies:CollaboraCve,co-constructed,reflexive,playful,creaCve,ethical,embodiedandexperienCal• Play,creaCvityandperformancearecentraltotheprojectdesign-connecCngtoourinterestinvoice,body,agency,andmanifesCngasplayfulandcreaCveintervenCons(publicevents,installaCons,games,drama–developedwithcommunityparCcipants).• D4Disstructuredas8inter-connecCngandmutuallyinforming‘streamsofwork’
D4D project design: Themes and methodology
One of the work-streams in D4D ‘Playful Bodies’ This work-stream is made up of 5 units • Unit1.‘We’rewatchingyou’–AudienceresearchexploringDisabilityperspecCvesonmainstreamculturethroughscienceficCons–thisisthebitthatIwillspeakingaboutthisaaernoon.• Unit2.Event:‘HackedOff’–tocriCquethedominanttropeswithingamestudiesresearchondisability(e.g.thepersistenceofdeficitand‘we-fix-u’models)• Unit3.EventwithDisabilityArtsOnline,lookingatdifferentperspecCvesonDApracCce,andtheimplicaConsforcommunityandaffiliaCon.• Unit4.Event:‘Troublinglegaciesandfracturedfutures’–exploringthelinksbetweendisabilityandeugenicsdiscourseanddisabilityhistories(andfutures).IncollaboraConwithEstherFox(arCst,CIandcommunitypartner)• Unit5.PlayandCommunityresearch:CreaCngasitespecificAltRealityGame–TheGuildoftheBravePoorThings(2019)workingwithEstherFoxandAccentuate,PramindaCaleb-Solly,gamedesigners,volunteerplayersandtheD4Dteam.
Playful Bodies, unit 1 ‘We’re watching you’ Highligh4ng the links between lived experience and insight: The Cultural Model of Disability • SeeChapter1,SnyderandMitchell(2006)–CulturalLoca8onsofDisability• TheculturalmodelisinformedbydisabilityacCvismandculturalstudies.• SnyderandMitchell’saccountoftheculturalmodelrecognisesthevalueofthesocialmodelofdisability,butapproaches‘impairment’inadisCnctway:asalivedexperiencethatgeneratesinsightandknowledge(an‘embodied’disability)
IseetheculturalmodelasbeingrelevantacrossD4D–intheemphasisonlivedexperienceand‘voice’,thevalidaConofdisabilityexperCse,intheuseofparCcipatorymethodsandintheemphasisonsituatedknowledgeproducCon,co-producConandagency.InthisparCcularunitofwork,theculturalmodelisinformingworkonmediatextsandinterpretaCon.
Unit 1: We’re Watching You DisabilityperspecCvesonmainstream,able-idenCfiedcultureAudienceresearchand‘disabilityreadings’ofscienceficCon.TowhatextentmightscienceficConsofferusscopeforcriCque;forde-neutralizingandde-naturalizingaspectsofable-idenCfiedculture?Therelevanceoftheculturalmodel:Ourexperienceofdisabilitybecomesasourceofinsight(ondisability,andonmainstreamable-idenCfiedculture).OurknowledgeisaninterpreCveresource.InterpretaConisembodied,andbodiesvary.Background:Thisdrawsonmypreviousworkonaffect,bodiesandexperience,andscienceficCongames(e.g.Carr2013)whichraisedquesConsabouthowexperienceofdisabilitymightinfluenceaspectsofourexperienceswithpopularmediatexts.ExampleOne:Thefeelingofbeing‘joltedout’ofDeusEx:HumanRevolu8on–agameaboutaheavilyaugmentedmannamedAdamJenson.
Augmenta4ons in Deux Ex – this is from Carr (2013)
• InthisgameaugmentaConsoffersocialandeconomicadvantagetocharacters.Whenothercharacterscommentontheprotagonist’saugmentaCons(whichtheydo)mostrefertoaugmentaConasapersonalchoice.Someeveninsulthimaboutit.ButJensondidnotvolunteertobeaugmented!Hisbossstuffedhimwithimplantswhenhewasunconscious.Inotherwords,JensenisregularlyconfrontedbyassumpConsthatcontradictorinvalidatehisexperience.
• WhenJensendidnotchallengeorcontestthemisrepresenCngofhisexperiencebyothercharacters,Ifelt‘jolted’outofthegame.Ihaveahistoryofbeing‘persuaded’towearaugmentaCons-hearingaids,etc.–andJensonhadbeenforcedto.Thenpeopleinsultedhimabouthis‘choice’.
• ThegameraisedquesConsaboutthelinksbetweenlivedexperience,affectandinterpretaCon.IexploredtheselinksusinganessaybyPatersonandHughes(1999).InPatersonandHughes(1999)theauthorsuseLeder’sworkon‘theabsentbody’andautobiographicalmaterialtodescribetheexperienceofanon-standardbodyencounteringnormaCvesocialpracCces.Theshortversion:‘theabsentbody’isthebodywe’renotthinkingabout.We‘re-become’awareofourbodiesatparCcularmoments–especiallywhenthatbodyisconsciouslyexperienced,exposedorrenderedaproblem.It’sanideathatresonateswithanumberofotherconceptsincluding‘distanciaCon’…
ThehosClitydirectedatJensen’sbodyhitasorespot.Itgavemeapang.Hisexperiencetangledwithmyexperience.Myexperiencesofaugmenta<onandmyexperiencesinclinicsshapedaspectsofmyexperienceofplayingDeusEx.
The clinic in games. ThesereflecConsondisability,feelings,interpretaConandlivedexperience• mademethinkmoreaboutalltheclinicalandmedicalimageryIwasfindingingames.
• anditalsomademethinkaboutgameswhileIwasattheclinic(asadeafpersonandasaparent)TherearevariouspointsofconnecCon
1. ScienceficConsareinterestedintechnology,bodiesandsocialchange(Sobchack1993)
2. ManyscienceficCongamesfeaturemedicalclinicsasalocaConinthegame’sficConalworld.3. Gamesassessplayers.GamesinviteperformancethenmaterialiseandquanCfy‘ability’asscores,
whiledepicCngdisabilityasloss,asliability,asthreatening,alienorabject‘other’4. Meanwhile,realworldclinicsaccommodategamesandgame-likeprocedures.
Herearesomeexamples…
Clinics, science, monstrosity and medical technology in games – Dead Space
DeadSpaceasks–WherewouldyoubewithoutScience?Andthenittellsyou.GoresmearedclinicsandwaiCngroomsMedicaltechnologies,cloningvatsGurneys,wardsandlabcoats‘Mad’doctorsandscienCstsAnatomyposters,anatomymodelsX-rays
Carr,D(2014)Ability,DisabilityandDeadSpace.GameStudies.Vol14Issue2December
Augmenta4on and prosthe4cs - Deus Ex: Human Revolu5on
ClinicsSurgeryAugmentaConResearchlabsWhitecoatsTrackingimplantsVisitstothemorgueAddicCon,dependenceandmedicaCon‘Corruptedscience’Carr,D.(2013)Bodies,AugmentaConandDisabilityinDeadSpaceandDeusEx:HumanRevoluCon,forFROGConferenceVienna2013
A visit to the last clinic in The Last of Us
The‘deathoftheclinic’=Thedemiseofsocialcategories=aresurgenceofthe‘natural’CivilandsocialrestoraConareexplicitlylinkedwiththeclinic.ThedestrucConofonegenreofassessment(theclinic/thecivic)asaprecondiConfortheadopConofanalternaCvegenreofassessment(fatherhood).SeealsoTheWalkingDead(TelltaleGamesversion,Ep1-5)
Carr,D(2014)RepresentaConsofAbilityinDigitalGames,fortheCriCcalEvaluaConofGameStudiesSeminar.28-29April2014,UniversityofTampere
• Myexperienceofgamesshapedmyexperienceoftheclinic.• Myexperiencesoftheclinic,shapedaspectsofmyexperienceswithgames.
Isitjustme?• Movingfromhere,to‘audiencestudies’…• “We’reWatchingYou”
Some relevant literature LiteratureondisabilityandscienceficConthatuseshumaniCes/closeanalysis-E.g.K.Allan(2003)DisabilityinScienceFic8on;Representa8onsofTechnologyasCurePalgrave,(K.Allan,Ed.)Literaturethatcombinesaudiencestudieswithdisabilitytheory–Eg.
Wilde,A.,2014.Spectacle,performance,andthere-presentaConofdisabilityandimpairment.ReviewofDisabilityStudies:AnInterna8onalJournal,6(3).
Amini-genre-scienCstswhoareannoyedthatjournalistswriteabouttheirworkusingscienceficConreferencesandmetaphorsSCllcollecCng…AudiencestudiesresearchonscienceficConsthatisinformedbydisabilitystudiesliterature(wheretheaudiencedonotidenCfyasable)
We’reWatchingYouThePlanStep1:Furtherworkonmethodologyandtheorising‘embodiedinterpretaCon’ofscienceficCons–connecCng‘readingformaCons’withtheknowledgeandfeelingsassociatedwithlivedexperienceofdisabilityviatheculturalmodel(seeCarr2017)Step2:Sharetheabove–variousvenues,includingwiththeaudiencemembersata‘disabilitypanel’atascienceficConfanconference(complete)Step3:SlowlymovingtowardstherecruitmentofparCcipantsviaa‘rollingsnowballchorus’–bywhichImeanthatitstartssmall(auto-ethnographic)thenitrollsforwardtocollectmoreparCcipantsatstage2,thenmoreagainatstage3and4,withparCcipantsinvitedtocriCquetheanalysisateachpriorstage.
Conclusion TheD4Dproject–alargemulC-partner,interdisciplinaryproject(2016-20,AHRC)Theculturalmodelofdisability(SnyderandMitchell2006)withanemphasisonlivedexperienceandinsightOneworkstreaminD4Dis‘PlayableBodies’andthefirstunitofworkis‘We’reWatchingYou’• DisabilityandscienceficCons• LookingatresistantandcriCcalperspecCvesonmainstreamable-idenCfiedcultureTheculturalmodelhasprovenitsvaluetome.Itiscentraltomyresearchdesign;myconceptualframeworkIhavebeenthinkingaboutthisconceptualframeworkinthecontextofinter-disciplinarydialogue,andreflecCngonwhatitmightmean(ifanything!)totheproject’scontributors,includingaudienceswhohaveexperienceofdisability.Becausewearediverse.Ourexperiencesofdisabilitymightgenerateinsight.Itdoesn’tmeanthatwe’reallgoingtoagreewitheachother.
Acknowledgements and bibliography DisabilityandCommunity:Dis/engagement,Dis/enfranchisement,Dis/parityandDissent(AKAtheD4DProject)isfundedbytheAHRC(2016-2020)undertheConnectedCommuniCesprogramme.ThePIisProfessorMarCnLevinsonatBathSpaUniversityandtheProjectManagerisEstherFox,Accentuate.Theprojectwebsiteisathtp://d4d.org.uk/
Allan,K(ed)2013DisabilityinScienceFic8on;Representa8onsofTechnologyasCurePalgrave
Carr,D.(2013)Bodies,AugmentaConandDisabilityinDeadSpaceandDeusEx:HumanRevoluCon,forFROGViennaSeptember27-28th.Publishedin‘ContextMaters’–there’sadraaonlineathtps://playhouse.wordpress.com
Carr,D(2014)Ability,DisabilityandDeadSpace.GameStudies.Vol14Issue2December
Carr,D(2017)‘Methodology,RepresentaCon,andGames’forGamesandCulture
Ellis,K.M.,2014.Cripples,bastardsandbrokenthings:DisabilityinGameofThrones.M/CJournal,17(5).
Malaby,T.M.,2007.Beyondplay:Anewapproachtogames.Gamesandculture,2(2),pp.95-113.
Paterson,K.,Hughes,B.(1999)‘DisabilityStudiesandPhenomenology:ThecarnalpoliCcsofeverydaylife’Disability&Society14(5)p597-610
Snyder,S.L.andMitchell,D.T.,2010.Culturalloca8onsofdisability.UniversityofChicagoPress.
Wilde,A.,2014.Spectacle,performance,andthere-presentaConofdisabilityandimpairment.ReviewofDisabilityStudies:AnInterna8onalJournal,6(3).
Moreinforma<onaboutmyresearchandpublica<onsisathUps://playhouse.wordpress.com/