“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

Games at the clinic Thinking about clinics as game se^ngs

1. Some4mes it looks like a game…

2. Similar tastes in décor

3. I get a controller 4…and I play a game

5. I get a score… 6. I get a prize!

• 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/