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amplydocumented,alsointhecontextofhealthcare:patientsareofenonthelow-
estrankinthishierarchy(O)Shea,BoazandChambers2019;Snyder2020).
Whatissplitol,accordingtoRoswithaScholzandRobertKurz,isprimarily
reproductiveworklikehousework,childbirth,andcareforchildrenandtheelderly;
andvaluesthatarenoteasilyquantifiableordirectlyproductive,likesensuality,
emotionality,andsolicitude.Scholzcorrectlyemphasisesthatthisworkandthese
valuesaremostlyprojectedontowomenwho,inturn,becomecarriersofvalues
and“virtues”thatareunwelcomeor“impractical”(ScholzandNavarroRuiz2017).
Sexuality,emotions,compassion,orcarearenotdirectlycontributingtothepro-
ductionandaccumulationofvalue,andsoarebannedfromtherealmof“mascu-
line,real”workandvirtues.Ahmedpointsoutthatemotionsareassociatedwith
womenandthefeminine(2015:6),andsothesearealsosplitolandprojectedinto
womenforprocessing,convenientlyremovedfromthemasculineworldofvalue,
powerandpolitics.
Tereisaconnectionheretotheworkofvulnerabilityandethicsofcaretheo-
rists.Forexample,MarthaAlbertsonFineman(2010)arguesthatneoliberalsocie-
tiesarebuiltaroundafalseidealoftheautonomousindividual:withinthismodel,
illness,weakness,anddependenceonothersallbecomeproblematicdeviations
fromthesupposednorm.Tesetheoristsarguethat,infact,allhumansareinter-
dependent,vulnerabletoharm,andinneedofcare:meaningfulequalitycannotbe
achievedwithoutrecognisingthisandrestructuringoursocietiesinresponsetoit
(Fineman2010).
Onecanseeaclearparallelherewithwhatpatientadvocatesandpatientorgan-
isationsdo.Teirworkisnotproductiveorefcientaccordingtothetraditional
framesofcapitalistthinking.Patientorganisationsdonotoperatetogroworto
make“profit.”However,thispoliticalandmoraltensionnotonlylimitstheavenues
offurtherdevelopmentofpatientorganisations,butalsoimpactstheirday-to-day
operationanddecisions.Teirdecisionmustbebetweentheconceptsof“growth”
and“profit”versus“sharing”and“altruism”(Bereczky2019).Atthesametime,
societyexpectswomenandcivilsocietyorganisations,standingasproxiesforwom-
anhood,totakecareofthesetaskstoanincreasingextentinaprocesscommonly
describedas“NGO-isation”(Kóczé2016:42;Ostertágová2016:60).
Citizenship
Whenresearchingandthinkingaboutthenatureandresultsoftheworkdone
bypatientadvocatesandorganisations,especiallywhenwelookattheprofound
changesthatpatientadvocacycouldachievearoundHIV/AIDS,certainquestions
relatedtocitizenshipunavoidablyarise.Expertpatientsandactivistsalsotendto
behavedilerentlyinothersituationsoftheirlivesnotnecessarilyconnectedwith
ContagiousCitizens
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