Counter-Storytelling for Social Change - Part 1: The Black Panther Party
Counter-Storytelling is “a method of telling the stories of people whose experiences not often told.” By telling these stories, we can expose, analyze, and challenge racism as well as promote social justice. In this series, we tell counter stories to highlight the challenges and triumphs around community advocacy and Sickle Cell Disease.
This article explores counter-storytelling through the lens of the Black Panther Party.
The Right to Health
Nearly 60 years ago, Huey P. Newton and Bobby Seale founded the Black Panther Party - a Black power organization rooted in America’s Civil Rights movement. Widely assumed to be a militant, radical, and violent organization, the Black Panther Party was revolutionary for recognizing that all Black Americans experienced oppression. During the civil rights era, the Black Panther Party promoted health activism and the Right to Health - the conviction that “everyone has the right to a standard of living adequate for the health and well-being of [themselves and of their] family.” The Black Panther Party’s efforts to uphold the Right to Health remained true in their efforts to support communities impacted by Sickle Cell Disease.
The Black Panther Party’s National Sickle Cell Screening Program
Committed to the Right to Health and in response to poor funding and treatment as well as race-based attention to Sickle Cell Disease in America, the Black Panther Party set up a national screening program to confront discrimination and racism in Sickle Cell Disease research and care.
The Black Panther Party’s National Screening Program included:
Door-to-door screening
Follow-up care at local hospitals for people impacted by Sickle Cell Disease
Referrals to genetic counselling
Beyond Diagnosis: Wholistic Model of Care
The Black Panther Party’s practices reflect a wholistic model of care, where they supported people with Sickle Cell Disease beyond diagnosis and across a continuum of care.
The Black Panther Party’s Sickle Cell Screening program was also an organising tool that responded to the direct needs of Black communities to improve community health. Namely, invoking the Right to Health, the Black Panther Party’s screening programs recognized and amplified knowledge of the biological realities and social circumstances – racism, discrimination, and neglect – that contributed to Sickle Cell Disease incidence and complications among Black Americans and other Black communities.
The Harms of Institutional Interventions
In 1972, the then American President, Richard Nixon, enacted the National Sickle Cell Anaemia Control Act. While the Black Panthers took a rights-based approach to Sickle Cell Disease and Black health, the Nixon government took a hasty, institutional approach, which resulted in harms to African Americans. This includes:
Mandatory screening for Sickle Cell Disease of children for entry into public school
Free circulation of genetic screening results, violating peoples’ privacy
Employment discrimination for people with the trait for sickle cell disease. For example, people with Sickle Cell Disease trait were denied jobs in the military and as flight attendants.
Denial of insurance for people with Sickle Cell Disease and trait
Overall, the state efforts reflected a means to an end - a means to surveille, control, and govern Black Americans.
The Enduring Legacy of the Black Panther Party
Although the Black Panther Party disbanded in 1982, they were influential in identifying Black health as a social justice issue. This framing of health remains as a powerful driver for health equity. Today, the social justice framing of efforts to improve Sickle Cell Disease awareness and care, including Ontario Health’s Sickle Cell Disease Quality Standard, can be attributed to Black Panther Party’s commitment to the Right to Health and wholistic model of care.
Learn More
Read Dr. Alondra Nelson’s chapter, “Spin Doctors: The Politics of Sickle Cell Anemia,” in her book, Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination
Read Dr. Mary. T. Bassett’s articles, ”Beyond Berets: The Black Panthers as Health Activists” and “No Justice, No Health: The Black Panther Party’s Fight for Health in Boston and Beyond”
About the Author
Vanessa Ferguson is a Health Policy & Health Equity Ph.D. student at York University living with Sickle Cell Disease (SCD). Through her research, Vanessa aims to unveil and challenge both new and old barriers to adequate and deserved care for Black and other racialized people living with SCD.
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