By Mary Crossley
Nearly three decades ago, I published my first law review article considering the law’s ability to address unequal treatment in a health care setting. The newly minted Americans with Disabilities Act was the law, and physicians’ reluctance to provide treatment to infants believed to be infected with HIV was the inequality. Eventually I expanded my horizon beyond disability law to consider potential legal remedies for physician bias across a range of patient traits. As I did so, I described the thread tying together my scholarly projects as “how the law responds (or fails to respond) to instances of health care inequality.”
The key word in that description was “instances.” It suggested that health inequality presents discrete problems for the law to address. Given those problems’ ubiquity, however, policy makers, regulators, and advocates deploying law against health inequities found themselves in a game of Whack-a-Mole. Whack one mole, and another one pops its head up. Address one instance of health injustice, and another pops up. The problem is that, no matter how quick our reaction times are, health inequality surrounds us, firmly embedded in American society. We need to look deeper to find its roots.
Over the last decade, the development of health justice frameworks, along with increasing public and legal attention to social determinants of health, have changed how I frame my scholarship, in several ways.
1. Health injustices are not discrete problems.
Health justice frameworks take as a starting point that most health injustice originates in inequitable social, environmental, and political systems. Social determinants interact and are mutually reinforcing. They are anything but discrete. Whack-a-mole is not an apt metaphor. Instead, social determinants remind me of the fungi that biologist Merlin Sheldrake describes in his 2020 book Entangled Life: How Fungi Make our Worlds, Change our Minds, & Shape our Futures. He explains how immense, subterranean fungal networks continually interact with and change other life forms, with results both beneficial and deleterious. Addressing health injustice requires situating it within such a network of interacting forces, not treating it as a discrete problem.
2. Law is a tool that can exacerbate (or ameliorate) health inequities.
Understanding that law itself shapes health outcomes requires recognizing that law is sometimes part of the problem. Law is a tool by which structural forces (like racism, ableism, and capitalism) deploy their power. Books like The Color of Law and The Whiteness of Wealth amply demonstrate the point. Understood as a tool, law itself is neutral. It can be used to subordinate and produce health inequity, but it can also undo long-standing inequities. For example, Daniel Dawes describes how advocates worked to have equity-enhancing provisions included in the ACA, offering a lesson in how to wield political determinants of health (including lawmaking) to advance health equity.
3. Centering people who experience health injustice is crucial.
Appreciating the depths of health inequity requires centering the experiences of people subjected to multiple dimensions of subordination. Like Michael Hickson, the disabled Black man who died from COVID-19 after a hospital, over his wife’s objections, refused to continue treating him. Or Henrietta Lacks’s daughter Elsie, who was confined to a Jim Crow institution for disabled Black people and likely subjected to brutal brain experiments until she died in 1955 at age fifteen. (My thanks to Michele Goodwin for pointing out Elsie Lacks’s story to me.)
4. Intersectionality is key to achieving health justice.
Foregrounding intersectionality helps build cross-movement alliances by identifying common values and shared goals. That is a central lesson I’ve learned from a book project examining health-related inequities endured by people who are disabled, Black, or both (Embodied Injustice: Race, Disability, and Health (forthcoming 2022)). Otherwise, multiply marginalized persons’ concerns are likely to be neglected by movement leaders who disregard their own privilege. For example, an advocate for disability rights may be keenly aware of barriers and stigma that disabled people face but be ignorant of their privilege as a White person. Or a racial justice advocate who is expert in how racial hierarchies subordinate Black people may be oblivious to the privilege attached to being abled. Failures to consider multiple dimensions of subordination produce at best a limited vision of health justice. Moreover, adopting intersectional perspectives in social movements can generate new knowledge, disrupt expectations of entrenched forces, and expand networks of support.
5. Health injustice anywhere is a threat to health everywhere.
Finally, health justice is not only about remedying injustice experienced by people who have been marginalized. Because (like the fungi) we are all connected, increasing health justice can offer broad benefits. Interconnectedness offers opportunities as well as challenges. Nobel-winning economist Joseph Stiglitz and best-selling author and racial justice advocate Heather McGhee The health of rich and poor, of Black and White is all bound together. The ripple effects of an injustice that harms a marginalized group’s health spread negative effects broadly. For example, in Dying of Whiteness: How the Politics of Racial Resentment is Killing America’s Heartland, Jonathan Metzl calculates that Tennessee’s rejection of the Medicaid expansion (a decision his research found was fueled by politically stoked racial resentment) may have come at the expense of up to 14.1 days of life per White Tennessean (p. 176). Harkening back to my scholarly roots in disability law, I prefer to think of health injustice as a Universal Design challenge. Universal Design seeks to make products inclusive, without lessening anyone’s experience in using the product. The principle can apply to social and health policies too. From a Universal Design perspective, policies eliminating health inequities can be good for all of us.
Mary Crossley is a professor of law at the University of Pittsburgh School of Law.