"The land of the sick and the land of the healthy": Disability, bureaucracy, and stigma among people living with poverty and chronic illness in the United States.

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  • Additional Information
    • Source:
      Publisher: Pergamon Country of Publication: England NLM ID: 8303205 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1873-5347 (Electronic) Linking ISSN: 02779536 NLM ISO Abbreviation: Soc Sci Med Subsets: MEDLINE
    • Publication Information:
      Original Publication: Oxford ; New York : Pergamon, c1982-
    • Subject Terms:
      Social Stigma*; Disabled Persons/*psychology ; Poverty/*psychology; Adult ; Aged ; California/epidemiology ; Chronic Disease/psychology ; Diabetes Mellitus, Type 2/epidemiology ; Diabetes Mellitus, Type 2/psychology ; Female ; Food Assistance/statistics & numerical data ; HIV Infections/epidemiology ; HIV Infections/psychology ; Humans ; Male ; Middle Aged ; Qualitative Research ; Racial Groups/statistics & numerical data ; Social Security/statistics & numerical data
    • Abstract:
      Disability benefits have become an increasingly prominent source of cash assistance for impoverished American citizens over the past two decades. This development coincided with cuts and market-oriented reforms to state and federal welfare programs, characteristic of the wider political-economic trends collectively referred to as neoliberalism. Recent research has argued that contemporary discourses on 'disability fraudsters' and 'malingerers' associated with this shift represent the latest manifestation of age-old stigmatization of the 'undeserving poor'. Few studies, however, have investigated how the system of disability benefits, as well as these stigmatizing discourses, shapes the lived experience of disabling physical illness in today's United States. Here we present qualitative data from 64 semi-structured interviews with low-income individuals living with HIV and/or type 2 diabetes mellitus to explore the experience of long-term, work-limiting disability in the San Francisco Bay Area. Interviews were conducted between April and December 2014. Participants explained how they had encountered what they perceived to be excessive, obstructive, and penalizing bureaucracy from social institutions, leading to destitution and poor mental health. They also described being stigmatized as disabled for living with chronic ill health, and simultaneously stigmatized as shirking and malingering for claiming disability benefits as a result. Notably, this latter form of stigma appeared to be exacerbated by the bureaucracy of the administrating institutions. Participants also described intersections of health-related stigma with stigmas of poverty, gender, sexual orientation, and race. The data reveal a complex picture of poverty and intersectional stigma in this population, potentiated by a convoluted and inflexible bureaucracy governing the system of disability benefits. We discuss how these findings reflect the historical context of neoliberal cuts and reforms to social institutions, and add to ongoing debate around the future of public social provision for impoverished and chronically ill citizens under neoliberalism.
      (Copyright © 2017 Elsevier Ltd. All rights reserved.)
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    • Grant Information:
      K01 DK107335 United States DK NIDDK NIH HHS; K24 AI134326 United States AI NIAID NIH HHS; R01 MH095683 United States MH NIMH NIH HHS
    • Contributed Indexing:
      Keywords: Diabetes; Disability; HIV; Neoliberalism; Social insurance; Stigma; United States; Welfare
    • Publication Date:
      Date Created: 20170903 Date Completed: 20180611 Latest Revision: 20211204
    • Publication Date:
      20231215
    • Accession Number:
      PMC5937915
    • Accession Number:
      10.1016/j.socscimed.2017.08.031
    • Accession Number:
      28865254