“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

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.

How Do We Balance Tensions Between COVID-19 Public Health Responses and Stigma Mitigation? Learning from HIV Research

“…There is a long history of othering in conceptualizing illness, whereby the sick are separated from the healthy [9]. Responses to illnesses are shaped by their unpredictability and perceived contagion [10].…”

Experiencing Stigma and Exclusion: The Influence of Neoliberal Perspectives, Practices, and Policies on Living with Chronic Illness and Disability

“…In the United States, neoliberal practices pervade the distribution of disability benefits to people whose illnesses and infirmities leave them unable to fend for themselves (Whittle et al ). These practices can lead to treating frail elders as incompetents and leave them with no voice.…”

“…Amelia () wrote, “I have also been denied SSDI five times in the last thirteen years for the same reason—I have conditions lasting over twelve months but they don't result in death and are not perceived as keeping me from being able to hold a job.” Amelia's statement expresses the plight of many chronically ill and disabled Americans who need assistance but are deemed ineligible for it. In Henry J. Whittle et al's () study of sixty four impoverished ill people with Human Immunodeficiency Virus and Type 2 diabetes, his respondents were denied help and treated as shirkers and malingers . Neoliberal policies reduced or ended the limited support such individuals had once received.…”

“…After World War II (WWII), neoliberal perspectives and practices spread in the United States as well as other countries and influenced diverse fields including healthcare, education, and criminal justice (e.g., Scambler ; Vassilev et al ; Wacquant ; Whittle et al ). Neoliberalism becomes evident in concrete policies and practices and assumes narrow conceptions of social responsibility and public accountability.…”

The process of stigmatization as a desocializing factor

“…The content of the next study describes functional criterion of the reflection of stigmatization to a certain extent. H. J.Whittle, K. Palar, N. A. Ranadive, J. M.Turan, M. Kushel, S. D.Weiser [6] address the problem of stigmatization at the level of government bureaucracy system. It is about the mechanism for issuing disability benefits in the United States.…”