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theirillness.Teygothroughaprocessofempowermentandlearning(relatedto
eachother),whichalsocontributestochangesintheirattitudesandbehavioursas
citizens,consumers,andmembersofsociety(Bereczky2019).
Roseprovidesausefultheoreticalframeworkfor“activebiologicalcitizenship”:
“anewactiveconsumer-liketurninthestrategiesofevenquiteoldsupportgroups
forthosewithparticularillnessesordisabilities,togetherwithnewgroupsformed
aroundspecificdiseases,especiallygeneticdiseases;newrelationsbetweenthese
groupsandmedicalresearchersinwhichsulerersandcarerscampaignedforre-
searchfunding,donatedmoney,tissuesandtime,andsoughttodirectresearchto-
wardscures.Alsonewrelationsbetweenpatientsandmedicalexpertise,andindeed
new‘active)modesofgoverningtheself,involvingself-educationinadisorder,and
self-management;acharacteristiccombinationofautonomisationandresponsibi-
lisationthatonemightterm‘bio-medicalprudence)”(Rose2009:70).
Patientorganisations,suchastheEuropeanAIDSTreatmentGroup,theCML
Alliance,MyelomaPatientsEuropeortheMelanomaPatientNetworkEurope,
providekeymaterialinformingandillustratingthismodelofactivebiological
citizenship.Teydonotstopatlearningaboutandunderstandingtheillnesses
theylivewithorarealectedby;instead,theyalsoactivelymakeclaimstoshape
theirenvironmentsandachievechangeinsociety.FoxandWard(2006)describe
thisprocesswhentheytalkabouttheindividualmovingfrom“expertpatientto
resistingconsumer.”Teircitizenshipisindeedactive,rootedintheirbiological
circumstances(andtheirstigmatisedorspoiledidentityaswell),anditishighly
politicised,too.
Kuhar,MonroandTakács(2018:102)referenceT.H.Marshallwhentheystate
thatcitizenshiprightsincludecivilrights(legalrights,freespeech,andmovement),
socialcitizenshiprights(includinghealthcareandwelfare)andpoliticalrights(in-
cludingseekingpublicofce).However,Ijoinothersinarguingthatcitizenshipalso
includesadimensionofresponsibility.IntheirstudyonhighHIVtreatmentadher-
enceratesinsub-SaharanAfricaandtheresultingsocialmovements,Nguyenetal.
(2007:31-34)introducetheconceptoftherapeuticcitizenship:“[therapeuticciti-
zenship]describesthewayinwhichindividualslivingwithHIVappropriateART
[anti-retroviraltherapy]asasetofrightsandresponsibilities.[…]Adherence[totreat-
ment]isaconsequenceofthistherapeuticcitizenshipproducedthroughpracticesof
self-fashioningandsocialtriagethatshapedtheearlyyearsofaccesstotreatment.”
Terapeuticcitizenshipthusdescribeshowthepoliticalpresenceoftheindividualis
structuredbytheirrelationandadherencetotreatment(Bereczky2019).
Teconceptofthepatientasa“goodcitizen”emergesascomplexandcon-
troversial,especiallyinlightofhowpatientsandtheirorganisationsexistinthe
currentcapitalistorder.Compromisesbetweenworkingwithinsystemslargely
controlledbythestateandcorporations,andconfrontingthesestructuresbecause
theyhindersomekeyobjectivesofpatientadvocacy(suchasaccesstomedicines
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TamásBereczky
