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A Welfarist Account of Disability

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DisabilityCase 1. The Famous Deaf LesbiansCase 2. DwarfismCase 3 Body Integrity Identity DisorderCase 4 Ashley CaseAshley’s ParentsCase 5 Colour BlindnessCase 6. IQ reductionCase 7. Cynthia (after Daniels)1. Species Norm Account of DisabilityEvaluative DisabilitySN2. Social ModelSocial Model of DisabilitySocial ModelWider ConceptSocial ModelProblemThe Welfarist AccountHarm and HarmfulHarm and HarmfulHarmful Trait Welfarist AccountFeatures2. Has an intrinsic normative dimension3. Relative to person and contextContext Dependent Context Dependent4. It’s ubiquitousUbiquitous5. Relation to Disease and Illness6. Degree or threshold or threshold-and-degree concept?Degree conceptDisability and DisadvantageRelation to Everyday ConceptWhy Revise?Relation to Other AccountsHybrid Concept 2. DisabilitySMDisabilitySMPrejudicePrejudiceRealistic ConditionsExample of PrejudiceDistributive Justice and PrejudiceDistributive JusticeDistributive JusticeRelation to DiseaseOne Final Account: Ability, Inability, DisabilityInabilityProblems DisabilityW or Disabilitya+W?ApplicationConclusionConclusion Change Society, Not PeopleSocial Not Biological EnhancementSocial Construction of DisabilityConclusion1Oxford Uehiro Centre for Practical Ethicswww.practicalethics.ox.ac.ukThe James Martin 21stCentury Schoolwww.21school.ox.ac.ukProgram on Ethics and the New BiosciencesAWelfarist AccountofDisabilityDrGuyKahaneProfessorJulianSavulescu2Oxford Uehiro Centre for Practical Ethicswww.practicalethics.ox.ac.ukThe James Martin 21stCentury Schoolwww.21school.ox.ac.ukProgram on Ethics and the New BiosciencesDisability•2dominantconceptsofdisability1. SpeciesNormModel2. SocialModel• Weproposeanewconcept: Welfarist Model3Oxford Uehiro Centre for Practical Ethicswww.practicalethics.ox.ac.ukThe James Martin 21stCentury Schoolwww.21school.ox.ac.ukProgram on Ethics and the New BiosciencesCase1.TheFamousDeafLesbians• In2001,SharonDuchesneau andCandyMcCullough,adeaflesbiancouplehadtheirsecondchildGauvin• Thewomen,whowantedtohaveadeafchild,conceivedGauvin throughArtificialInseminationbyDonor(AID),usingspermfromafriendtheyknew tohavefivegenerationsofinheriteddeafnessinhisfamily• Theyarguedthat: Deafnessisanidentity,notamedicalafflictionthatneedstobefixed Thedesiretohaveadeafchildisanaturaloutcomeoftheprideandself‐acceptancemanypeoplehaveofbeingdeaf Ahearingchildwouldbeablessing,adeafchildwouldbeaspecialblessing Theywouldbeabletobebetterparentstoadeafchildthantoonewhowashearing Thechildwouldgrowuptobeavaluedmemberofarealandsupportivedeafcommunity• “Deafnessisnotadisability”4Oxford Uehiro Centre for Practical Ethicswww.practicalethics.ox.ac.ukThe James Martin 21stCentury Schoolwww.21school.ox.ac.ukProgram on Ethics and the New BiosciencesCase2.Dwarfism•Twoachondroplastic dwarfsrequestPGDtoselectanembryowithdwarfism• Theyarguethatbeinglittleisnotadisability,itisadifference.• Theirhouseandlifestylehavebeenmodifiedfortheirshortstature.Theyclaimthattheywouldbebetterabletorearashortchildrather thananormalchild.Adwarfchildwouldhaveabetterlifewiththem.5Oxford Uehiro Centre for Practical Ethicswww.practicalethics.ox.ac.ukThe James Martin 21stCentury Schoolwww.21school.ox.ac.ukProgram on Ethics and the New BiosciencesCase3BodyIntegrityIdentityDisorder• Johnisawant‐to‐beamputee.Hedoesnotidentifywithabodywith4limbsandrequestsanamputation. attendsconferenceswithamputeesandissexuallyattractedtothem,wantingtobeoneofthem. hasinvestigatedseriouslyhowtoamputatehisownlegbelowtheknee. hasundergoneextensivecounsellingandpsychiatrictherapybutthedesirepersists. isdepressedasaresultofhaving4limbsandconsideringself‐amputation woulduseaprosthesisifamputationwasprovided.6Oxford Uehiro Centre for Practical Ethicswww.practicalethics.ox.ac.ukThe James Martin 21stCentury Schoolwww.21school.ox.ac.ukProgram on Ethics and the New BiosciencesCase4AshleyCase Ashley,anine‐yearoldfromSeattlewhowasbornwithstaticencephalopathy,aseverebrainimpairmentthatleavesherunabletowalk,talk,eat,situporrollover.• willremainatadevelopmentallevelofathreemontholdbaby•In2004,high‐doseestrogen therapytostuntAshley’sgrowth,theremovalofheruterusviahysterectomytopreventmenstrualdiscomfort,andtheremovalofherbreastbudstolimitthegrowthofherbreasts.•Ashley’sparentsarguethattheAshleyTreatmentwasintended“toimproveourdaughter’squalityoflifeandnottoconveniencehercaregivers.7Oxford Uehiro Centre for Practical Ethicswww.practicalethics.ox.ac.ukThe James Martin 21stCentury Schoolwww.21school.ox.ac.ukProgram on Ethics and the New BiosciencesAshley’sParents•ʺAshleyʹssmallerandlightersizemakesitmorepossibletoincludeherinthetypicalfamilylifeandactivitiesthatprovideherwithneededcomfort,closeness,securityandlove:mealtime,cartrips,touch,snuggles,etc.ʺ8Oxford Uehiro Centre for Practical Ethicswww.practicalethics.ox.ac.ukThe James Martin 21stCentury Schoolwww.21school.ox.ac.ukProgram on Ethics and the New BiosciencesCase5ColourBlindness•Awatercolourpainterdevelopsararedisorderwherehegoescolourblind,nolongerabletodistinguishbetweenredandgreen9Oxford Uehiro Centre for Practical


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