Embodied Injustice: Race, Disability, and Health
By: Mary Quandt
At the intersection of Blackness and disability is a population of especially vulnerable people, as racism and ableism mutually reinforce each other. Disability is more prevalent among Black people than white people, and Black people are more likely to develop a disability at a younger age — a direct result of structural racism. SLU LAW student Mary Quandt recaps Distinguished Speaker Professor Mary Crossley’s recent talk on her new book, Embodied Injustice: Race, Disability, and Health.
Professor Mary Crossley presented her new book, Embodied Injustice: Race, Disability, and Health, for the SLU LAW Center for Health Law Distinguished Speaker Series on Oct. 17, 2022. A visiting professor at SLU LAW during the 2022 fall semester, Professor Crossley is the John E. Murray Faculty Scholar and Director of the Health Law Program at Pitt Law. The passage of the Americans with Disabilities Act shaped her early scholarship and has influenced her legal career. Professor Crossley’s book was inspired by her research, through which she discovered deeply ingrained misconceptions and prejudices that shaped, in parallel, the experiences of disabled people and Black people alike. These experiences of structurally enforced prejudice have an even stronger effect at the intersection of Black and disability identities.
Professor Crossley began her talk by sharing the story of Michael Hickson, who died June 11, 2022, from complications of COVID-19. Two years prior, the father of five had a heart attack at age 43, resulting in quadriplegia. When Mr. Hickson contracted COVID-19, it quickly turned life-threatening due to multiple complications. His family reports that after only three days in the hospital, physicians began to suggest hospice care for Mr. Hickson because “he wasn’t going to get better.” His wife recorded a conversation with his doctor asking about why her husband’s physicians thought it futile to treat him:
“Because his quality of life…he doesn’t have one. ”
“Because he has quadriplegia?”
“Correct.”
Over his wife’s objections, they withdrew treatment. A few days later, Mr. Hickson died.
Professor Crossley used the story of Michael Hickson to introduce the parallel medical distrust between Black and disabled Americans’ experiences. For Black people, this distrust has been fostered through a long history of mistreatment and medical apartheid—that is, the “us[e] of Black bodies to further the interests of white bodies.” Prof. Crossley highlighted two notoriously horrific historic examples of medical apartheid: J. Marion Sims’ nonconsensual gynecologic experiments on enslaved Black women, and the Tuskegee Syphilis study.
Many disabled people avoid medical care and hospitals out of fear that their lives will be considered less valuable and less worthy of saving. Professor Crossley shared a story from Dr. Bill Peace, an anthropologist, professor, and disability rights speaker. During a hospital stay for chronic, yet easily treatable, pressure wounds, a new doctor tried to convince Dr. Peace that he should discontinue his life-saving antibiotic and be made “comfortable” instead: “Out of the ‘kindness’ of the physician’s heart, I was being offered an opportunity to end my life.” Despite his strong desire to live, Dr. Peace died of a treatable sepsis wound in 2019.
As in medical apartheid on Black bodies, Disabled bodies have been used for the sole benefit of non-disabled bodies, as in the case of the Willowbrook State School for Disabled Children. In her book, Professor Crossley describes how doctors at Willowbrook deliberately infected resident children with Hepatitis C to study the disease—with the full consent of the children’s parents and “independent reviews from other experts.” The Willowbrook study led to advances in knowledge about vaccines, at the cost of these children’s lives.
Outside of noteworthy historical examples, disabled Americans experience inaccessibility and devaluation in their everyday lives. Although quality of life, as measured by self-satisfaction, is generally about equal between disabled and nondisabled people, 82% of physicians report that disability itself cannot support high quality of life. Likewise, Black Americans experience devaluation and discrimination in health care in their one day to the next lives.
Kimberlé Crenshaw’s model of intersectionality illustrates how the intersection of Blackness and disability is especially vulnerable, as racism and ableism mutually reinforce each other. Disability is more prevalent among Black people than white people, and Black people are more likely to develop a disability at a younger age. The disproportionate disablement of Black people is the result of structural racism; Beth Ribet calls it emergent disability: the “pattern of burgeoning mental and physical conditions which correlate, often strongly, with poverty and various forms of social and political subordination.” Professor Crossley illustrated this phenomenon with the Flint Water Crisis, in which poor, primarily Black, citizens were supplied with lead-poisoned water. Lead exposure in children can cause behavioral issues and intellectual delays; indeed, the children of Flint have experienced a spike in special education needs due to the poisoned water.
Professor Crossley went on to discuss current events and trends influencing the pursuit of justice for Black and disabled people, and how the intersectionality of those two identities causes unique challenges. For example, the disability pride movement “may well ring hollow” for those experiencing disability caused by unjust social structures. Still, there are groups working to achieve justice: the Disability Justice Collective is one, and Northwestern Pritzker School of Law just launched a Center for Racial and Disability Justice.
Professor Crossley also highlighted opportunities for racial and disability justice advocates to demand an answer to this question: How can doctors learn to respect the experiences of those who live within bodies that mainstream culture considers “less than?” One option is through the Liaison Committee on Medical Education’s accreditation standards on justice. These standards do not currently consider intersectionality or social determinants of health. “An intersectional alliance could push for accreditation standards that explicitly encompass anti-racist and anti-ableist training for new physicians,” said Professor Crossley.
Fixing inequities is not cost-less, but that does not mean those fixes are worthless. The ADA requirements to change physical structures to allow disabled people access have helped more than just disabled people. This is called the curb cut effect, after the community benefits seen when cities began installing ramps from streets to sidewalks: Not only do they benefit wheelchair users, curb cuts increase accessibility for elderly individuals with lower mobility, stroller pushers, and bicyclists.
As Professor Crossley said in her closing, “health is not a zero-sum game.” “Structural inequality threatens the health of our entire population,” not just the health of the poor, Black, or disabled bodies.
Professor Crossley’s lecture was given in person and via zoom on October 17, 2022 as a part of the Health Law Distinguished Speaker Series hosted by the Center for Health Law at SLU LAW. Each academic year, the Center hosts leading scholars and practitioners who shape health law and policy. Students attend keynote lectures in the series and meet with speakers to discuss timely law and policy issues during small group discussions.