Fighting For Health Rights in the Carceral State

Saturday, April 1, 2023, 1:30 PM - 3:00 PM

Type: Paper Session

Tags: Disability Studies; Medical History; Race


This panel explores histories of health activism in prisons, mental hospitals, and immigrant detention centers. Dangerous health conditions and medical abuse and neglect have been common features of incarceration and involuntary confinement in the United States. Yet prisoners, patients, detainees, and their advocates have fought back against overcrowding, denial of medical care, surgical and pharmaceutical torture, and other threats to their health and rights. Jessica Adler's paper discusses how imprisoned HIV-positive people in the 1980s and '90s demanded access to treatment and protection from discrimination. Elizabeth Nelson analyzes court cases initiated by Black and other vulnerable patients and their families that exposed racism and medical abuse in mental institutions, and were instrumental in the move toward deinstitutionalization in mental health care. Beatrix Hoffman's paper focuses on poor sanitary conditions and inadequate medical care in immigration detention centers, which have been targets of immigrant rights advocates since the mid-19th century. Taken together, the papers analyze the impact of carceral systems on human health, and the importance of health demands to social movements that challenge mass incarceration. The panel is chaired by Susan Reverby, who has published extensively on the history of prison health and medical experimentation.

Papers Presented

Race, Disability, and Structural Violence in Late-20th-Century Psychiatric Hospitals

This presentation examines the closure of Indiana’s flagship mental institution, Central State Hospital, in the wake of the 1991 deaths of two Black women, Lydia Shelby and June Highsaw. Both women had been patients on the the hospital’s Bahr unit—a locked ward for “difficult” patients—and both women were labeled as mentally ill and intellectually disabled. Shelby died due to an overdose of medication; Highsaw froze to death in her room, and high dosages of medication were also a contributing factor. Their mothers brought suit against the hospital, claiming that the medical director treated the women differently than white patients, using drugs to keep them “in a stuporous condition.” The ensuing investigation into the women’s deaths led to the 1992 gubernatorial decision to close the hospital. I place the mothers’ lawsuit, known as Clark v. Donahue, in the context of other key court cases of the late 20th century that led to the downsizing and closure of psychiatric institutions in Indiana and nationwide, such as Jackson v. Indiana (1972) and Olmstead v. L. C. (1999). In each case, the plaintiffs were individuals who had been multiply marginalized due to race, disability, gender, and/or ascribed criminality. Because they were especially vulnerable to mistreatment, such individuals reveal the nature of structural violence in the US system of psychiatric hospitals. They and their families, moreover, played key roles in the litigation that would dismantle the institutional system of care for people with mental illness and intellectual disabilities. This presentation demonstrates that race, disability, gender, and criminality are key factors in understanding how and why psychiatric hospitals’ standards of care came under scrutiny in the late 20th century US. In addition, Black people with disabilities should be recognized for the key roles they played in the history of deinstitutionalization.

Presented By
Elizabeth A. Nelson

Immigrant Detention and Health Care Rights

The United States has the world’s largest system of immigration detention, with an average of 40,000 people in custody every day. In 2020 and 2021, the national media reported that overcrowded facilities and inadequate screening and medical care were leading to numerous outbreaks of Covid-19 among detained immigrants. But this was not the first time that health conditions in immigration detention had come under scrutiny. A 2017 report by Human Rights Watch found that, of 15 deaths in immigration custody in a sixteenth-month period, “inadequate medical care contributed or led to the person’s death” in eight of them. Its report described immigrants who died of seizures, heart attacks, pneumonia, and cancer after being denied timely care. The report noted that, “Under the US Constitution and international law, anyone who is detained or incarcerated is entitled to adequate medical care.” This paper will analyze the history of medical, sanitary, and health conditions in immigrant detention centers, and the efforts of rights advocates and of detainees themselves to draw attention to these conditions. As early as the 1850s, the immigrant press reported on overcrowding at Ward’s Island, New York, that was spreading disease among detainees, and in the 1890s organizations in San Francisco’s Chinatown accused authorities of medical neglect in the deaths of detained Chinese migrants. In the 1980s, Cubans detained following the Mariel Boatlift rioted, and Mexican migrants at the El Centro detention facility in California held weeks-long hunger strikes, to protest conditions that included a lack of medical care. In the present day, health care activism by detainees and their advocates has included protests against forced hysterectomies and the denial of abortion rights, and hunger strikes demanding protections against Covid. The paper will compare moments when the demands of immigrant and health care rights movements converged, and examine their efficacy in challenging the U.S. detention regime and health care system.

Presented By
Beatrix Hoffman, Northern Illinois University

Fighting “Deliberate Indifference to Health Care Needs”: The Early Years of HIV/AIDS in US Prisons

In 1990, a group of HIV-positive people incarcerated in New York filed a lawsuit alleging that they had been denied access to physicians and medications. The state, they said, had “withheld… the compassion expected of a mature society” and violated tenets established by the courts. It had exhibited “deliberate indifference to health care needs” and practiced “cruel and unusual punishment.” The lawsuit represented a broader reality. As the population in U.S. carceral institutions doubled from 300,000 in 1980 to 600,000 in 1990 and many politicians answered the cascading HIV/AIDS epidemic with silence, prison administrators, health and legal professionals, and incarcerated and free world activists grappled with complex questions related to ethics, policy, and practice. Amid widespread misconceptions about how HIV/AIDS was transmitted, and lack of empathy for marginalized groups thought to be most impacted by it, corrections officials segregated people with HIV/AIDS from general prison populations, failed to protect them from abuse, and neglected to offer them treatment. Advocates maintained that such actions equated to egregious violations of civil liberties – violations that made incarcerated people disproportionately vulnerable to poor health outcomes. Drawing from archival records of the American Civil Liberties Union and other sources, this paper maintains that the HIV/AIDS crisis in U.S. prisons helped to shape so-called mass incarceration and activism among imprisoned and LGBTQ people in the 1980s and 1990s. It underscores that recent reckonings about the lethal danger of incarceration – and ongoing debates about how to define humane care in punitive, violent institutions – have deep historical roots.

Presented By
Jessica L. Adler, Florida International University

Session Participants

Chair: Susan M. Reverby, Wellesley College
McLean Professor Emerita in the History of Ideas and Professor Emerita of Women's and Gender Studies, Wellesley College

Presenter: Jessica L. Adler, Florida International University
Associate Professor, Department of History, Florida International University

Presenter: Beatrix Hoffman, Northern Illinois University
Professor of History
Northern Illinois University

Presenter: Elizabeth A. Nelson
Assistant Professor, Medical Humanities & Health Studies
Indiana University-Purdue University, Indianapolis (IUPUI)