LEADER 06632nam 2200493 450 001 9910774786303321 005 20230919202715.0 010 $a1-80008-031-X 035 $a(MiAaPQ)EBC6803073 035 $a(Au-PeEL)EBL6803073 035 $a(CKB)19410603800041 035 $a(OCoLC)1285779251 035 $a(EXLCZ)9919410603800041 100 $a20230919d2021 uy 0 101 0 $aeng 135 $aurcnu|||||||| 181 $ctxt$2rdacontent 182 $cc$2rdamedia 183 $acr$2rdacarrier 200 00$aManaging chronicity in unequal states $eethnographic perspectives on caring /$fedited by Laura Montesi and Melania Calestani 205 $a1st ed. 210 1$aLondon, England :$cUCL Press,$d[2021] 210 4$dİ2021 215 $a1 online resource (248 pages) 311 08$aPrint version: Montesi, Laura Managing Chronicity in Unequal States London : UCL Press,c2021 9781800080300 320 $aIncludes bibliographical references and index. 327 $aCover -- Half Title -- Series Information -- Title Page -- Copyright Page -- Contents -- List of contributors -- Foreword -- References -- Acknowledgements -- Introduction -- Defining and defying chronicity -- Care and the politics of deservingness -- Structure of the book -- Concluding remarks -- Notes -- References -- 1 A house of cards: Chronicity, care packages and a 'good life' -- Background -- Methods -- Theoretical framework: Temporality, ethics and care -- Clarissa's struggle and the house of cards -- Temporal/spatial reconfiguration: a discussion -- Relationality: a discussion -- Conclusion -- Notes -- References -- 2 (Un)Deservingness and disregard: Chronicity, hospice and possibilities for care on the American periphery -- Deserving and undeserving of care -- (Un)Deservingness, attention and disregard -- Shaping a landscape of care through disregard -- Disregarded costs and the disappearance of medical equipment -- Claims to deservingness and bureaucratic mechanisms of disregard -- Durable medical equipment 'within reach' -- Snowbirds -- 'The only way to be heard': Inaudibility and absent complaints -- Ms Donovan -- Conclusion -- Notes -- References -- 3 Publicly privatised: Relative care support and the neoliberal reform in Finland -- Introduction -- Two facets of privatisation in the care system -- Relative caregivers in Archipelago Town and municipal support -- Families, relatives and caregiving practices in Archipelago Town -- Struggling with closed doors -- The professionalism of relative care -- The difference between relative caregivers and care workers -- Conclusion -- Notes -- References -- 4 The 'hassle' of 'good' care in dementia: Negotiating relatedness in the navigation of bureaucratic systems of support -- Introduction -- 'Official' paperwork -- The fuss and trust of relatedness. 327 $a'Getting it all sorted': (Mis)adventures in bureaucratic hassle -- The state as a bad relative -- Conclusion -- References -- 5 Assemblages of care around albinism: Kin-based networks and (in)dependence in contemporary Tanzania -- Introduction -- Multiple assemblages of care around people with albinism -- The reduction of institutional care and the 'NGOisation' of the nation state -- Kin-based care and humanitarian discourses in Ilula: Florentina's experiences -- (In)dependence in Dar es Salaam: Daudi's self-care, care for and care about others -- Conclusion -- Note -- References -- 6 Alcoholism and evangelical healing in Indigenous Mexico: Chronicity and care at the margins of the state -- From comorbidity to syndemics of alcoholism and marginality -- Five centuries of alcoholisation -- Drinking at the margins -- Care for whom? Drinking patterns and the possibility of care -- Medical (un)care: Governmental health providers -- Evangelicals and alcohol: Healing within the community -- Conclusions -- Acknowledgements -- Notes -- References -- 7 When 'care' leads to 'chronicity': Exploring the changing contours of care of homeless people living on the streets in India -- Homelessness, mental health care and chronicity -- Street beats: Differentiating the 'homeless' and the 'homeless mentally ill' -- Medicines and employment as the mainstays of 'care' -- Chronic illness or chronic suffering? Medical, social and experiential understandings of homelessness -- Caregiver-social worker alliance: 'Chronicity' as the ground for care -- Conclusion -- Notes -- References -- 8 'My body is my laboratory': Care experiments among persons who use drugs in Downtown Montreal -- Fieldwork and research strategy -- Research participants' background, public policies and deservingness -- Street-level psychiatric drug circulation -- Para-pharmacologists. 327 $aCaring for oneself: Practices of psychiatric drug use -- Downing from a high -- Managing withdrawal -- Detoxing from drug use -- Medicating mental health problems -- Caring for others: The moral value of psychiatric medication -- Deservingness, chronicity and care: Final reflections -- Acknowledgements -- Notes -- References -- 9 'These doctors don't believe in PANS': Confronting uncertainty and a collapsing model of medical care -- Introduction -- A brief description of PANS -- Ethnographic research -- Making sense of the unknown -- Uncertainties, incompetence or a problem of medicine? -- A collapsing model of medical care, inadequate social welfare and family destruction -- Conclusion: Diagnoses as uncertainty, chronicity and hope for the future -- Notes -- References -- 10 Chronic living in zombieland: Care in between survival and death -- Introduction -- Living in chronicity -- living with affordances -- The pharmaceutical embrace -- Judicialising the suffering body -- Final remarks -- Notes -- References -- Afterword -- Cartographies of chronicity -- Waymarking entanglements -- Making and unmaking of worlds: 'Becoming' with chronicity -- References -- Index -- Back Cover. 330 $aManaging Chronicity in Unequal States investigates how people live with chronic conditions in different contexts around the world, where judgements on human worth have long-lasting effects on people's wellbeing. 606 $aChronic diseases$xSocial aspects 606 $aChronically ill$xSocial conditions 615 0$aChronic diseases$xSocial aspects. 615 0$aChronically ill$xSocial conditions. 676 $a362.1 702 $aMontesi$b Laura 702 $aCalestani$b Melania 801 0$bMiAaPQ 801 1$bMiAaPQ 801 2$bMiAaPQ 906 $aBOOK 912 $a9910774786303321 996 $aManaging chronicity in unequal states$92571668 997 $aUNINA