‘FromCivilDeathtoCivilLife
PerspectivesonSupportedDecision-Makingfor
PersonswithDisabilities’
ProfessorGerardQuinn
CentreforDisabilityLaw&Policy,
NationalUniversityofIreland(Galway),
www.nuigalway.ie/cdlp
gerard.quinn@nuigalway.ie
TbilisiStateUniversity
Georgia.
20December,2015.
1
1.
CivilDeathaffectingmanyGroupsinHistory.
2.
WhytheResistancetoendingCivilDeathforPersonswith
Disabilities?
3.
TowardaCivilLife-TheParadigmShifttoSupports.
4.
Conclusions.
2
“Toknowoneself,oneshouldassertoneself”
AlbertCamus.
Thankyouforthehighhonourofaddressingyouthisafternoon.
IcometoyoufromthefarendofEuropeandlovethefactthatwecanunite
acrossourcommonEuropeanhometoaddresscommonissuesthatdirectly
affectourcitizens.
Iamimpressedwithyouruniversities’deepinvolvementinimportantEU
researchfundingprogrammes–anotherthingweshare.AndInoteyouhadthe
wonderfulopportunitylistentoYotamTolumofBIZCHUTafewweeksagoon
thejourneytofullpersonhoodinGeorgia.I’msuremywordswillonlyaddtohis
inencouragingyouinyourreforms.
IacknowledgeandwarmlywelcomethedecisionofyourConstitutionalCourtto
endguardianshipandtakenoteofthevibrantdebatehereabouthowbestthat
canbedone.OurownParliamentisabouttoenactEurope’sfirstAssisted
Decision-MakingAct.Thelawreformprocessinbothcountriesraisesome
commonissues,liketheroleofcourtsandexperts.
Thetopicofthisafternoon’stalkis‘FromCivilDeathtoCivilLife–perspectives
onsupporteddecision-makingforpersonswithintellectualdisabilities.’This
titlehasbeenchosendeliberately.Theterm‘civildeath’comestousfromSir
WilliamBlackstone–thegreatEnglishlegalhistorianinthe17thcentury.He
famouslyobservedthatuponmarriagewomensufferscivildeathinthesense
thatallofthedimensionsofherlegalpersonhoodweretransferredintothe
handsofherhusband–herrightosue,herrighttoholdandmanageproperty,
herrighttomakedecisionsforherself,herrighttovote.Ithastakenalongtime
forfulllegalpersonhoodtoberestoredtowomeninmanycultures–andin
someculturestodayshestillsufferscivildeath.
3
I–andothers–haveoftensaidthatsomethingsimilarhappenedtopersonswith
disabilitiesthroughlegalincapacitylawsandguardianshipthroughoutthe
centuries.Yetwearenowataninterestingturningpointwiththeabolitionof
guardianregimesinsightinmanyplacesthroughoutouttheworld.Thisturning
pointisnotyetfullyunderstood.Andsitsimplicationshavenotyetbeenfully
appreciated.Butitlooksunstoppable.
Iwanttospendmylimitedtimedoingthreethings.
Firstofall,Iwanttostandbackformthefieldofintellectualdisabilitytopainta
broaderpictureofcivildeathasithasaffectedmanydifferentgroups.Thisis
importantasitgivesabroadercontextandhelpsyouseethereformoflegal
capacitylawsaspartofahistoricalcontinuumaffectingwomen,peopleofcolour,
prisonersandchildren.
Secondly,Iwanttoreflectonwhythereformsthatbenefitedthesegroupsdid
notautomaticallycross-overtothebenefitofpersonswithintellectual
disabilities.Thereweremanyblockages.Butpermitmetosuggestthatthemain
blockagewastheassertionthatpersonswithintellectualdisabilitieswere(and
are)indeed‘different’–inthattheirdifferenceofcognitiveorcommunicative
capacitymeantthatcivildeathwasnotonlyappropriatebutindeedtheonlyway
ofproperlytakingareoftheirinterests–asortofhyperpaternalism.
TherearetworesponseswhichIwilldevelop.Oneistorelyontheimperative
natureofinternationallaw(specificallytheUNconventionontherightsof
personswithdisabilities)todemandtheroll-backofguardianship–ofcivildeath.
Iagree.However,thereisadeeperreasonwhyaroll-backofguardianshipis
requiredandIwanttounfolditforyou.Guardianshipregimesrelyona
standardaccountofwhatitmeanstobehuman,toexercisemoralagencyin
one’sownlife,tobepresentandactiveintheworld.Itsrestsonanexaggerated
centralityofcognitionandcommunicativeabilityindecision-making.However,
therealityisthatthestandardaccountisnolongerstandardtoday.Recent
scientificadvancesrevealthehumanbeingtobefarmorecomplex–muchless
4
individualisticandmoresocialinhis/herdecision-making.Iwillassertthat
thesescientificadvancesalonedemandtherollbackofguardianshipsystems.
Thirdly,Iwanttosayafewthingsaboutthenewsupportparadigm.Whatdo
wereallymeanbysupport?Whatarethedeepconnectionsbetweensupported
decision-makingandthedesireandtherighttocommunityliving?Whatdoes
therejectionofafunctionalistapproachinthesupportparadigm(tobe
explained)meanforexpertinputsintheprocess?Whatisthedeeperimageof
autonomyandhumanflourishingatplayandhowshouldGovernmentsrespond?
1.
CivilDeath.
First,thecuriouslifeof‘civildeath.
Sadly,legalhistoryisrepletewithexamplesoftheimpositionof‘civildeath’on
manydifferentindividualsandgroupsofindividuals.
Themostobviousexampleistheinstitutionofslaverywhichconvertspersons
into‘non-persons’inlaw.Iftheyarenotpersonstheycanbeconsidereda
speciesofpropertywhich(who)canbetradedinanopenmarketandwhose
livesarecontrolledatthebehestofthirdpartieswithoutmuchletorhindrance
fromthelaw.
Generallyspeaking,thiswasimposedonpersonsofcertainraces–butnot
always.Itwasfueledbyasenseofsuperiorityandacorrespondingattribution
ofmoralinferiority.Anditwasfueledsimplybynakedself-interest.Itcouldbe
–andwas-imposedonthelosers(andtheirfamilies)afterwars.Indeed,being
soldintoslaverywasforalongtimeconsideredoneofthenaturalconsequences
ofwar–thespoilsofconquest.Closingdownthemarket-endingthe
internationaltradeinpersons(theslavetrade)inthe19thcentury-wasthe
beginningoftheendoftheinstitutionofslaveryitself.Howeverits
abandonmentinthe19thcenturyasadistinctandvalidlegalcategoryhasnot
stoppedcontemporaryformsofslaveryinourglobalizedworld.
5
Womentoohaveoftensufferedaformof‘civildeath’–andstilldoinsomeparts
oftheworld.Inasense,womenbecametheirhusband’spropertywhocould
thendirectthem(andespeciallytheirfinancialaffairs)andsuewhenhis
‘property’rightsinhermightbedamagedbythirdparties.Asenseofmoral
inferioritywasascribedtowomendisguisedinthelanguageofdifferenceandof
respectingdifference.Womenmightbeconsideredpeople(unlikeracial
minorities)–justlessso.Thiswasnotquiteslavery–butitmusthavefeltlikeit.
Childrentoosufferaformofcivildeathinthesensethatresponsibilityforthe
directionandcarearehandedtotheirparentsasnaturalguardians.Thishasnot
generallybeenrationalizedonatheoryoftheirinherentmoralinferiorityorby
nakedselfinterest–althoughinpoorersocietiesthepowertocontrolthelabour
ofchildrenmustfunctionasonereasonkeepingthemunderthecontrol
(disposition)oftheirparents.Societyandthelawinmostculturesnowsee
childrenasmoralpersonswithlesserlegalpersonhoodonaccountoftheir
greaterthannormalneedforprotection,gradualempowermentandeventual
releaseintotheworldasresponsibleadults.Itwasthis‘natural’differencein
capacitiesandthepotentialforenhancedcapacitythatjustifiedholdingthemto
thewillofanother(theirparents).
Andofcourseprisonersstillsufferaformofcivildeathinthesensethatatleast
someoftheircivilandpoliticalrightswere(andare)takenawayupon
incarceration.Penalreformmovementsarequicktoremindpeoplethat
prisonersremainpersons–andthenseektoameliorateanyconsequentlossof
legalpersonhood.FewsocietieswoulddenytherightoftheStatetowithdraw
certainlibertiesagainstthosewhohaveviolatedthecriminallawthatembodies
theverybasisforpeacefulsocialco-existence.Ofcourse,societiesdifferasto
wheretodrawtheline.
Sometimes,civildeathhasevenbeenimposedforreasonsofpoliticalloyaltyor
trustworthiness.Forexample,duringtheAmericanRevolution,various‘tests’
wereimposedtoforcepeopletodemonstrateashowofloyaltytotheemerging
6
regime.Ifthetestwerefailedthencertaincivilandpoliticalrightswere
routinelywithdrawn.
Civildeathinlawcouldmeanthattheperson(thehuman‘subject’)wasalways
treatedasan‘object.’Itsnotfornothingthatweoftensaythatthepurposeof
theUNdisabilitytreatyistotreatpeoplewithdisabilitiesas‘subjectsandnotas
‘objects.’Civildeathinlawcouldleadtothirdpartiesdirectingone’spersonal
destinyaswasthecasewith‘ownership’byahusbandover‘his’wifeorthe
controlexertedbyprisonauthoritiesoveraprisoner.Afterall,iftheentitywere
biologicallyalivebutlegallydeadthensomeoneorsomewayhadtobefoundto
manageitsdestiny.
Thehistoryoflawreform–especiallyinthe20thcentury–hasbeenaboutthe
slowandgradualimpositionof,firstofall,‘objective’andhumanestandardsof
behavioronthosewhoexertedcontrolortherightsof‘ownership’overothers.
Indisabilitywecallthisthe‘bestinterests’standard.Evenifprisonersare
deniedtherighttovotetheymustneverthelessbetreatedhumanely.Onlylater
cametheslowandgradualrestorationofthefullindiciaoflegalpersonhoodto
thoseaffected.
Evenformthisbriefsurveyitshouldbeclearthattheimpositionofcivildeath
throughouthistoryandtodaywasandisverymuchamatterofsocialand
politicalchoice.We(orsomeoneinpower)imposeditonracialminorities,on
thelosersofwars,onwomen,onprisoners,onputativetraitors–andonpersons
withdisabilities.Again,moreoftenthannotthisimpositiondoesnothaveits
rootsindoubtsaboutthemoralstatusoftheaffectedpersonsas‘persons.’It
wasdoneagainstvulnerablegroupsbythoseinpowerforveryspecific
advantages.
Ofcourse,andverymuchafterthefact,theresultinglossofcivillifecouldbe
rationalizedalongthelinesthatthepersonwasnotactuallya‘person.’Thiswas
howslaverywasrationalizedintheUSSouthbeforetheCivilWar(itwascalled
‘thatpeculiarinstitution’ofslavery).Somehow(atleastintheself-interested
7
imaginationofsome)peopleofcolourcouldbeconsideredtobesoradically
differentandunfitforfreedomthatslaverywastheonlyoption.Andofcourse,
themoretheirbehaviorwasconstrainedandshapedbycircumstancesbeyond
theircontrol,themoretheyexhibitednegativecharacteristicsthatweresaidto
justifynegativeviewsaboutthem–aperniciousself-fulfillingprophesy.
RecallthewayHeinrichHimmlerjustifiedtheNazitreatmentoftheJewsaswell
aspeoplewithdisabilities(labelingthemas‘humananimals’).WhatHimmler
wasdrivingatwastheimplicitboundarybetweenhumansandanimals–trying
todepictpeoplewithdisabilitiesasanimalsagainstwhomanythingcouldbe
doneandwasdone.
2.
WhytheResistancetoendingCivilDeathforPersonswith
Disabilities?
Civildeathhasbeenendedformostgroups.Sowhyhastherestorationoflegal
capacity–offulllegalpersonhood–topersonswithdisabilitiescomelast?
Theytoo(oratleastsomeofthem)havesufferedaformof‘civildeath.’
Morevisibly,theyhavesufferedextensivecivildeathinlawespeciallythrough
theimpositionoflegalguardianship.Effectively,thismeantatransferofthe
legalrightsoftheirpersonhoodtosomeoneelse,toapublicauthority,acourtor
athirdparty(whetherrelatedorunrelated).
And,eveniflegalrightswerenotformallytransferredbylaw,they(adultswith
intellectualdisabilities)wereoftentreated‘asif’theywerecivillydeadinthat
others(families,institutions)assumedtherighttomakedecisionsfororabout
themwithoutanylegalauthority.
Civildeathhashadtheeffectoftakingawaytheirautonomyanddecisionmakingpowersinareassuchasthefreedomtomarry,therighttovote,theright
tomanagetheirownfinancialaffairs,therighttomaketheirowndecisionswith
8
regardtomedicaltreatment,therighttorefusetreatmentsuchassterilization,
therighttoexercisecivildutiessuchastositonajury,therighttochoosewhere
toliveandwithwhom,therighttochoosehowtolive(e.g.,minormatterssuch
astherighttodeterminewhentosleep),therightofprivacy,etc.Thispanoplyof
rightsgotothedignityofpersonhoodaswellastherightofpersonstobeinthe
worldontheirowntermswithothers.
Generallyspeaking,asaforementioned,thefirstwaveoflawreformreformin
thecontextofguardianshiphasbeencharacterizedbythesuperimpositionof
‘objective’standardsof‘bestinterests’tocontroltheactionsofthesethird
partiesandanarrowingofthecategoryofpersonssusceptibletothelossoflegal
rightstoensurethatonlythosewhoreallyneedguardianshipareadmittedtoit.
Thusthefieldwas‘sansitised’inhowitfunctionedaswellas‘telescoped’in
termsofitsscopeofapplication.Butitsessenceremainedunchanged.
Whythishesitation?Ifcivildeathcanbeliftedforothergroupsthenwhynotfor
personswithintellectualdisabilities?Whatisthedifferencebetweenintellectual
disabilityandtheseothergroupsthatjustifiestheretentionofcivildeathforthe
formerandnotthelatter?
Weknowthatracialminorities,womenandothersarequitecapableoflooking
afterthemselves–ofexercisingtheirautonomy.Itsjustthattheywere
arbitrarilyprecludedfromdoingsointhepast.Theirmoralpersonhoodwas
neverseriouslyindoubt–althoughardentslaveholdersandthemostfervent
followerofpatriarchymighthavedisagreedinthe19thcentury.Theirlegal
personhoodwasunjustlyimpairedanditwasonlyamatteroftimebeforeitwas
restored.
Whatdistinguishesintellectualdisabilityofacertainseverity(orsoitissaid)is
thattheveryexistenceofthedisabilitygoestotheheartof,andimpairs,whatit
meanstobeaperson.Whenallissaidanddonethisessentiallymeansthat
certainpersonswithintellectualdisabilitieslackthecognitiveorintellectual
meanstoresponsiblydeterminetheirowndestiny–tomaketheirownchoices
9
anddecisions.Manywouldquestiontheircapacitytoexercisetherightsthatgo
withrecognitionasalegalperson.Why?
Partofthereasonmosthumansocieties(notall)valueandrespecthuman
freedomintheworldhastodowithatrustinthecapacityofpersonstochoose
theiractions(andinactions)andtoexercisetheirautonomyresponsibly.Of
course,theypayapriceafterwardsiftheydon't–eitherintheirownpersonal
livesorbytriggeringtheattentionofthecriminallaw.Butwegenerallycut
peoplealotofslackto‘choosetodowrong’-andfacetheconsequences.
Thisassumesthereisa‘self’somewheredirectingone’sactions(andinactions).
Itassumesthereis‘humanagency’intheworld–thatthe‘self’canemergefrom
itsinternalexiletomakeitselfknownintheworldandexercisechoice.It
assumeswecan‘know’eachother,interpreteachotherandrespecteachother’s
knownorexpressedwishes.
Thechallengeofintellectualdisabilityisthatmanypeoplebelievethatcivildeath
isnotanimpositionoranarbitraryexerciseofpowerbythoseinauthority.
Rather,itissimplyareflectiononasadreality.Eitherthesepeopleare
genuinelydeadinthesensethattheimpairmentissoseverethatwecanno
longertalkofa‘self’behindthepersonaofdisability.Or,the‘self’mayaswellbe
deadbecausewedonotcurrentlyhavethefullmeanstodivinetheirintentions
ortousetheargotofouttimestounderstandtheir‘willandpreferences.’
Itisnoaccidentthatthetreatmentofpersons(especiallyadults)with
intellectualdisabilitieswasequatedinthepastwithinfants(infantilisation’–i.e.,
treatingpeoplewithdisabilitiesasiftheywereinfantchildren).Thebig
difference,ofcourse,wastheexpectationthatchildrenwouldeventuallyemerge
fromthecocoonofparentalcontrol–emergeintofulllegalpersonhoodintheir
ownrightwiththerighttocontroltheirownlivesincludingthe‘righttodo
wrong’(providedtheycouldbetrustedtotakeresponsibilityfortheiractions).
Indeed,emergeeventodisrupttheirparentsintentionsforthem.Nosuch
10
expectationattachedtopersonswithintellectualdisabilitiesastheirincapacities
werenottemporarybutlifelong.
Everyimpositionofcivildeathonanygroupposesprofoundquestionsonthe
essenceofwhatitmeanstobehuman.Butthesequestionsarethrowninto
sharpreliefbyintellectualdisability.Thesequestionscouldbeside-steppedor
avoidedinthecontext,e.g.,ofgender,becauseitisself-evidently(tomost
people)truethatwomenarepersonsworthyofmoralconsiderabilityandlegal
rights.Buttheycan’tbeside-steppedinthecontextofintellectualdisability.
OnewillbehardpressedtodaytofindsomeonelikeHimmlerwhowillopenly
saythatpersonswithintellectualdisabilitiesare‘humananimals.’True,some
(especiallyinstitutions)willact‘asif’theywere‘humananimals’–butveryfew
willrationalizetheiractionsalongtheselines.Ontheotherhand,mostpeople
willintuitthatpersonswithintellectualdisabilities(atleastofacertainseverity)
donothavethenativecapacitytosafelynavigatethelifeworldandthe
impositionofcivildeathisjustawayofacknowledgingthathardreality.Thisis
certainlytheviewofmanyStatestodayintheworld.
Thisviewpointdoesnotsaythatwecannotandshouldnotliberalizeexisting
lawsoncivildeath.Ofcoursethereisconsiderablescopeinremovingmany
(mostpeoplecurrentlyunderguardianshiparetherebecauseofincorrector
exaggeratedassumptionsabouttheirincapacities).Yet,accordingtothis
worldview,evenifwecanreducethefieldofapplicationofguardianshipthere
stillremainsafieldofapplicationsincetherearestillsomewhocannotmakeit
andwho‘need’anddeservecivildeath.Thisisthedominantworldviewinthe
worldtoday.
Butwhatisthestandardaccountofpersonhood–moralandlegal?Thestandard
accountseemsanchoredinpointoftimefromtheEnlightenmentforward.Its
componentpartsarerelativelystraightforward.
Firstofall,itpositstheexistenceofa‘self’–ofan‘I’thatconstitutestheperson.
11
Allpersonshaveabody.Notwobodiesareexactlyalikeanditisinterestinghow
mostofusfocusonthefaceasexpressingwhothepersonis.Andall(orthevast
majority)personshaveabrain.Thebrainisofcoursepartofthebody.Oneof
theenduringproblematicsistheextenttowhichtheideaorconceptorrealityof
themindisseparatefromorseparablefromthebrain.Themind/body
problematicseemstohaveconsumedthoseworkinginthefieldofthe
philosophyofmindforcenturiessinceDescartes.
Regardlessofwhereonecomesoutonthisissueitisfairlyclearthatpossessing
amindhasbeengenerallyheldtobeoneofthepillarsofpersonhood.Andthe
minddoesn’tjustapprehendtheworld–itapprehendsitself–itisaselfconsciousentity.Itisconsciousofwho‘it’is–ofitsownidentitythroughtime.
Itisconsciousoftheworldarounditandofitsownunderstandingand
appreciationoftheworld.Itisconsciousofitsownposturetowardtheworld–
anditsownpreferences.Asa‘self,’itpossessitsownwill–andthroughitswill
itexpressesitselfintheworld.Andithasitsownpreferences–whichare
distinguishablefromthoseofothers–whichhelps,cumulatively,todefineits
‘self.’Allofwhichisinformedbyitscapacityforreason–forrationality.Thisof
courseassumesacertainlevelofcognitiveability–preciselywhatisdamaged
throughintellectualdisability.Reason,inturn,assumesacapacityforreasoned
deliberation.Interiordeliberationintheabstractisonedimension.Butthe
mostimportantdimensionforusisreasoneddeliberationconcerningtheselfin
theworld.
Theworldconstantlyconfrontsuswiththeneedtomakechoicestorespondto,
e.g.,immediatethreats,orimminenteventsortostrategizeaboutmorelongtermplanningforone’s‘self’intheworld.Thisiswherehumanagencyfitsin.It
bridgesourinteriorlifewithourmanifestationintheworldwherebywetake
controloftheonlythingwecanreallycontrol(our‘selves’)andexpressthatin
ourbehaviortowardothersandintheworld.Acknowledgingourhumanagency
isimportant.Itmeansthatweareaccordedthefreedomtodowrong–andto
facetheconsequences.Itsabsencemeansthatasun-freehumanagentsweare
12
notheldresponsibleforouractionswheretheycauseinjurytoothers(the
essenceoftheoldinsanitydefence).
Evenifalloftheabovearepresent(ordetectablypresent)thenonemustalsobe
abletoconnectwithandcommunicateone’s‘self’intheworld.Ifonecan’t(at
leastintheconventionalsense)thenitbecomeshardtoestablishthatthereis
indeeda‘self’lurkingwithintheframeofabodyorthat,ifthereis,thenitswill
andpreferenceareunknownandunknowable.Communicativeinability
thereforecancausesuspicionthatnotonlyisthe‘self’unreachabletoanyby
‘others’buttheremaynotactuallybea‘self’lurkingbehindthemaskofdisability.
Whatsmypoint?Mypointisthatthis‘standardaccount’explainsthevarious
‘tests’usedinlawtodetermineorconfirmtheexistenceoflegalcapacitytomake
one’sowndecisions.Theytendtoturnonfactorssucharationalabilityto
understandtheworld,arationalabilitytoappraiseoptionsforaction,arational
abilitytosiftthroughthelikelyandprobablyconsequencesofone’sactionsor
choices,arationalabilitytoarriveatachoicethatexpressesourown(uncoerced)preferencesandofcourse,arationalabilitytoformulateourchoicesin
alanguageorformofcommunicationthatotherscanunderstand.
Ofcourse,inaworldconstructedlargelyonrationalprinciples(afterall,thatwas
thechiefgoaloftheEnlightenment)thisemphasisonrationality–on
communicativerationality–makesalotofsense.Therationalexpressionof
preferencesallowsforarationalaccumulationofpreferenceswhichaidinthe
designofsocial,economicandpoliticalprocesses.Maybeanotherexampleof
rationalityworkingitselfpurethroughgenerations.Ofcourse,thisneedfor
rationalexpressionbecomesaself-reinforcingdynamicaccordingaswhat
‘others’needtohearandseeisrational.Inotherwords,the‘relianceinterest’of
thirdparties(landlords,doctors,bankers,educators)inrationalitybecomesthe
drivinginterest.Ourrationallyconstructedlifeworlddemandsnothingless.
13
Butisthisaccountreallytheonlyoneavailableanddoesitactuallyresonatewith
ourownexperiences?Ithinknot–andthisisthesecretbehindArticle12ofthe
UNconvention.
Modernscienceisdisplayinginbrillianttechnicolorthetrueextenttowhichthe
selfisasocialconstruct.Atoneextremeisthefieldofsociobiologyor
evolutionarypsychology.ThisfindsitsrootsinDarwin’sworkonnatural
selectionandtheroleplayedbyourgeneticheritageincombinationwithour
environmentinmouldingoursenseofself.Atoneextreme,itcanleadtothe
viewthatthe‘self’-likethe‘mind’-isanillusion.Certainly,iftakentosuch
extremesitplacesnotjustanasteriskbutalsoahugequestionmarkoverall
decision-makingwhetherby‘normal’peopleorpersonswithintellectual
disabilitiesalike.Myintentinmentioningsociobiologyisnottodenythe
existenceofa‘person’orawilloramind(althoughmanydo).Rathermyintent
istoplacenotionslikeautonomyandmindincontextandtoshowhowthe
standardaccountisfarfrommonolithic.
Certainly,muchneuroscienceisyieldingnewtheoriesofthemindwhichhave
beenconspicuouslyabsentfromdebatesaboutthe‘self’includingdecision
makingandcommunityliving.AntonioDamasio,forexample,isfamousforthis
thesisthatthebrainis‘wiredtoconnect.’Hedoesnotsaythatthebrainofthose
withhighercognitivefunctioningis‘wiredtoconnect.’Hesaysthatallbrainsare
wiredtoconnect.Inessencethe‘self’emergesfromtheseconnections.Our
‘selves’areinter-subjectiveandourautonomyisrelational.Similarly,Bruce
Hooddevelopstheideaofthe‘socialbrain’.Thepointisthatmodern
neurosciencedebunksthestandardaccountofahermeticallysealedand
disconnectedmind.Whatitpointstoinsteadisthequalityofthesocial
connectorsinourlivesandinthelifeofthemind.Itsprobablythenormal
interplayofsupportandthreatthat‘others’posethatidentityisformed.Thisis
anotherwayofmakingsenseofthesupportparadigminArticle12andthefaith
inArticle19thatplacementinthecommunityisgoodforallpersons.
14
And,stillinthefieldofscience,contemporaryclinicalpsychologyisalsorelevant
sinceittendstorevealthecomplexityofdecision-makingwhichisveryfarfor
thesimplespatialorunilinearimageaboveofconsciousness,mind,emotion,
rationalityanddecision.Decision-makingisneversostraight-forward.Indeed
manyclinicalpsychologistsquestiontheveryexistenceoftheboundarybetween
cognitionandemotion.Whatisreason?Arethereanypurelyreason-driven
decisions?Ifso,whowouldevergetmarried?Muchoftherelevantliterature
castsdoubtsonthestandardaccounttosaytheleast.Andofcoursethese
doubtsapplytoallofus–notjustpersonswithintellectualdisabilities.Addedto
recentliteratureinclinicalpsychologyistheburgeoningfieldofbehavioral
economics.
Thestandardaccountofmind,consciousnessandrationaldecisionmaking
underpinsmuchclassicaleconomicsandanimatesmayeconometricmodels.Yet
theexplanatorypowerofthesemodelshasbeenfounddeficient.Economists
havebeenreassessingtheroleofrationalityineconomicdecision-making.
Indeed,thelatest2015WorldBankWorldDevelopmentReportfocuseson
exactlythis:Mind,SocietyandBehavior.Clearlythestandardaccountneeds
substantialrevision.
Philosophywhetherancientormodern,has,ofcourse,longponderedthe
dialecticbetween‘self’and‘other’–betweenanatomisticorindividualistic
accountoftheselfandtheinter-subjectiverealitythatweallintuitand
experience.ThisissowhetherwearetalkingancientConfucianphilosophy,
Islamicthinkingandcontemporarytheoriesofhumannature.Thefocus–
almostfixation–oncognitionwassomethingthathappenedataparticular
momentintime(Descartes)andismoretheexceptionthantherulein
philosophy.Furthermore,itwasconsolidatednotsomuchforphilosophicalas
forpoliticalreasons
Onemighttakeexceptiontotheintroductionofreligionintoanyassessmentof
thestandardaccountandintoanynewframing.Itcertainlyhasnoplacein
DarwinistaccountsandifwearetobelieveYuvalHarari,itisquintessentiallyan
15
‘imaginedreality.’Yetthepositionstakenbytheworld’smainreligionsover
timegiveusanaddedinsightintolong-heldandenduringviewsaboutthenature
ofman.Mostreligionsoptforasocialapproachtotheself–notanindividualist
one.Indeed,Islamreputedlydoesnotevenseedisabilityasarealdifference
betweenpeople.Ofcourse,religionisparsedfromtheperspectiveofthenature
ofmanvisavisanultimatecreator.
Thediversityofviewsisenoughinitselftocastdoubtonthestandardaccount.
Oratleastitshowsthatthestandardaccounthasnotinfactbeenstandardfora
longtime.
Sowhatdowehave–thestandardaccountisbadenoughinitself.Butitalso
underpinsmuchofthelawwehaveinherited.Mypointisthatthelawhasto
change–guardianshiphastoberemoved–notjustbecausetheUNtreatysaysit
shouldbutbecauseitisnolongersupportedbyrespectablescientificor
philosophicalunderstandingsofwhatitmeanstobehuman.
3.
TheParadigmShifttoSupports.
Theabovepaintsabroadercontextthannormalto‘explain’thedeeplogicof
Article12oftheConvention.ThisdeeplogictoArticle12isnotapparentonits
surface–butmakingitplainhelpsexplainwhyArticle12takestheturnsthatit
does.
Wesawhowcivildeathwasremovedfromtheothergroupsaboveovertime.
Therewereactuallytwowavesofreformonlegalguardianship–bothbasedon
humanrights.Theyoverlaptothisday.Article12istheleadingedgeofthe
secondwaveofhumanrightsreformsoflegalcapacityregime.
Thefirstwavedatestothe1990sandisencapsulatedbeautifullyin
Recommendation99(4)oftheCommitteeofMinistersoftheCouncilofEurope.
Theessenceofthefirstwaveofreformofguardianship–basedoncontemporary
humanrightsanalysisatthetime–wasthattheinstancesoftheimpositionof
16
legalincapacityshouldbereducedandonlyimposedwheretherewassome
clear’functional’deficitwithrespecttoaparticulartypeofdecision-making(e.g.,
infinancialaffairs).
So,fromasubstantivepointofviewlegalincapacitywastobenarroweddownto
theseinstancesofclearfunctionalincapacities.Anotherfeatureofthisfirst
wavewasthattheprocessforimposingguardianshipshouldbetransparent,
clear,regular,freefromconflictsofinterest,and,mostimportantly,mediated
thoughtanindependentcourtoflaw.Notethatthis‘functionalist’approach
concedesthelegitimacyofguardianship–itjustreducesitsinstances.Notethat
thisfunctionalistapproachequatesmentalincapacitywithlegalincapacity(at
leastincertainfunctionalareas).Therefore,experttestimonyisdeemed
importantinordertoaccuratelygaugethepresenceandextentoffunctional
deficits.Andnotetheimportantroleofcourts.
Theengagementofcourtsfromwithinthisfunctionalistapproachmakessense
becausewhatisreallyhappeningisthatrightsarebeingstrippedaway.Classic
‘ruleoflaw’theorydemandsthatcourtsmediatethisprocessandpoliceit.
InpointoffacttheEuropeanCourtofHumanRightshasbeensteadily
interpretingtheEuropeanConventionalongthelinesofthisfunctionalist
approach–demandingforinstancethefull‘equalityofarms’oftheindividualin
thelegalprocessandthats/heshouldbeseenbythecourt.
Ionlysaythisinordertobecrystalclearaboutthecompletelynewtrajectoryof
Article12.
OnemightconsiderArticle12tobethesecondwaveofthehumanrights
approachwhichsupercedeseventhecaselawoftheEuropeanCourtofHuman
Rights.Why?
Article12isapost-functionalistinstrument.
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Itimplicitlyrejectstheviewthatmentalincapacityeverequateswithlegal
incapacity.ThispointhasbeenstronglyreinforcedbytheUNCommitteeonthe
RightsofPersonswithDisabilities.
Itimplicitlyrejectsthefunctionalistapproachofsimplyreducingguardianshipto
coveroneortwoareasinapersons’lifewherethereis‘proven’mental
incapacity.Itdeniestheimpositionofanyformofguardianship.
Itimplicitlyrejectshighlyindividualisticaccountsofpersonhoodandlegal
capacity.Instead,itreliesontheideaofsharedpersonhoodandthenatural
supportsthatflowfromfreehumaninteraction–somethingthatis,bydefinition,
impossiblewithinaninstitution.
Itimplicitlyrejectsaroleforcourtsinpolicingthedenialofrights.Indeed,if
legalcapacityispresumedthencourtsdonotlogicallyhavearoleinrestoring
peopletolegalcapacitysincethatissomethingtheyalreadyhave.Ifcourtshave
aroleitistoensurethatthesupportsthatareinplacedonotthemselves
smoothertheperson.However,thispolicingroleisverydifferenttosayingthat
thecourtshavearoleindeterminingwhatsupportsshouldbeinplace–intruth,
thepersonalchoiceoftheindividualliesattheheartofthisdetermination.
ItisobviousthatthetheoryofequalitythatunderpinsArticle12isonethatsees
thedifferenceofintellectualdisabilitypositively.
ItisalsoobviousthatArticle12islogicallylinkedtoArticle19ontherightto
liveindependentlyandbeincludedinthelifeofthecommunity.Theimageat
playbetweenbothArticlesisthatofthepersonflourishinginhis/hersocial
connectionswithothers.It'sthesocialselfthatcomestothesurfaceinArticles
12and19.ThatmeansthatthesupportswetalkaboutinArticle12arenatural
supportsthatoccurinanycommunity–butwhichhavebeendeniedtopeople
withdisabilities.Anditmeansthatthebest–indeedtheonly–waytoachieve
thisisoutsideinstitutionsandinthecommunity.Indeed,itmightbeconsidered
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aformofinhumananddegradingtreatmenttograntpeoplelegalcapacityin
institutionsandthenkeeptheminthere–aKafkaesquenightmare.
Oneimportantimplicationoftherejectionoftheequationofmentalincapacity
orcommunicativeincapacitywithlegalincapacityisthatthesupportsweput
intoplacearenotconnectedwithhumandeficits.Itsnotasifweconcedelegal
capacity,identifydeficitsandthenputinplacesupportstogetoverthesedeficits.
Itsactuallytheotherwayaround.Weputinsupportstosparkthewilland
preferenceoftheperson.Weputinsupportstoassistintheexerciseof
autonomy–nottosubtlyimposeourviewofthe‘right’decision.Weputin
supportstoenablethepersonbeunderstoodorcommunicate–andmaybenot
inthewaythat‘we’communicate.Inshort,weshiftfocusentirelyfromhuman
deficitstoplacetheemphasisonasearchfornewtechniquesofdiscovery–new
waysofunderstandingthepersonbehindthedisability.Importantly,noonecan
imposesupportsonanother.ThatisacoreprincipleofArticle12.
IthinkitisclearthatArticle12reachesouttocommunities–tosocialinclusion
withincommunities–totheexpansionofsocialcircles–providenatural
supportsforpersonswithdisabilities.ThemostusefulroletheStatecandoisto
issueCodesofGoodPracticetoensurethatsupportsdonotundermineinstead
ofunderpinningtheperson.Itsobviousthatthisworksbetsalongsidea
communitylivingstrategy–notjustforthosecurrentlyinaninstitutionbutalso
forthosewithfewoptionsathome.
AmorerobustrolefortheStatemightbeimaginedwithrespecttoaminority
whosepersonahasturnedunnaturallyinwardduetonomeaningfulsocial
connectionsoveralifetime.Buteventhen,oneshouldbewaryaboutdirect
Stateprovisionofthesupport.Itshouldkick-startaprocessandnottakeitover.
4.
Conclusions.
Whatcanweseefromtheaboveanalysis?
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Firstofallpersonswithintellectualdisabilitieswerenotaloneinsufferingcivil
death.Wecanseeapatternhere–ofgraduallyrestoringlegalpersonhoodto
manydifferentgroupsovertime.Intellectualdisabilityissimplythelastoutpost
ofcivildeath.
Secondly,theallegeddifferencesbetweenpersonswithdisabilitiesandothers
arenotenoughtopreserveguardianship.Itturnsoutthatthestandardaccount
ofwhatitmeanstobeapersonandtomakeyourowndecisionsrationallyisno
longerstandard.Evenifitwere,lookathowaccusationsofirrationalityalso
heldwomeninbondageovertheyears.Sciencepointstoaninterestingmixof
emotion,irrationality,impulseandrationalizationinallofus.
Thirdly,theswitchtothesupportparadigmpointsalightinalongneglected
darkcorner–howcanwedeveloptoolsofdiscoverytorevealthepersonbehind
thedisability.Thereasontheyarenotimmediatelyapparentisbecausewehave
notinvestedtimeinthemandreliedexcessivelyontheconvenientoptionwhich
wastotakeaperson’svoiceawayandsimply‘manage’them.
Fourthly,thisvoyageofdiscoverycanbesttakeplaceinthecommunitywith
naturallyoccurringsupports.Theprimedirectiveofsocialservicesneedsto
change–itsnotjustaboutmeetingbasicneeds–itsalsoaboutbuildingbridges
forpeopleintotheirowncommunities.Thatiswhythereisanintimate
relationshipbetweentherighttolegalcapacityandtherighttoliveinthe
community.
Fifthly,whataboutournaturalhumanimpulsetoprotectpeopleagainst
damagingchoices?Myownpersonalviewisthatthisisawhollynaturalhuman
response.Theprobleminthepastwasthatthedeviceweusedtoprotectpeople
–guardianship–endedupdoingexactlytheopposite.Notionslike‘best
interests’didnotworkwellinprotectingpeople.Andinanyevent,itisastrange
formofprotectionthatremovesaperson’svoice.Thatdoesnotmeanthatthe
protectiveimpulseisillegitimate.Indeed,Article16oftheUNdisabilitytreaty
forcesustothinkthroughhowbesttoprotectpeopleagainst,violence,
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exploitationandabuse.Theemphasisonnewtechniquesofdiscoveryunder
Article12doesnotbanishtheprotectiveimpulse–butitmakesitsub-servethe
person’sautonomy.Aradicalre-balancingistakingplace.Newlineswillneedto
bedrawnasexperienceemergesonhowasupportsystemworks.
Allinall,thisisanewlandscapeforpersonswithdisabilities,theirfamiliesand
services.Wewillallneedtolearnandadapttogether.Itisbuiltonafaiththat
thereisapersonlurkingbehindthedisabilityandthatnewtechniquesof
discoverywillallowustoreachthatpersonandenablehim/hertobeinthe
worldinaccordancewiththeirownworldview.
Asajourneyitbringsoutthebestinallofus.
IstartedwithalinefromAlbertCamus.Letmeendwithsomewordsfromour
nationalpoet–WilliamButlerYeats:
“Donotwaittostrike‘tilltheironishot–makeithotbystriking.”
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