In my introductory post to this symposium, I suggested that medicine and health tapped into a discourse of power that had the power to either harm or help. Medicine can trigger benefits in the law — what I call “medical civil rights,” where advocates rely on medicine’s language to trigger both formal legal rights and public advantage. At the same time, I acknowledged that black, indigenous, and people of color (BIPOC), are often left behind.
In a midpoint reflection, I theorized the problem through the lens of a double bind. On one hand, medicine erases the needs of BIPOC and the harms they experience — the health harms experienced by frontline medical workers, or caused by school and residential segregation — so that they cannot access medical civil rights. On the other hand, BIPOC are rendered hypervisible in contexts where medicine continues to oppress. They are used in clinical trials and tarred with xenophobia and narratives of genetic difference. What should be done?
Several authors offer solutions. I separate them into three categories: (1) community reform, (2) social and legal reform, and (3) medical reform. Of course, all of these solutions are interrelated. Legal and policy change drives medicine; medical research drives law, society, and policy — and both are driven through community activism and consciousness.
First, community reform gives a name to the problem, and situates it within medical frames. As Aziza Ahmed’s post puts it, social movements “often drive our national conversation on access to health care by doing the hard work of identifying, naming, and drawing attention to the complexity of issues that people face.” Ahmed provides examples of these movements—for example, her work shows how social movement alliances “altered the entire AIDS response and brought resources to women” — particularly, excluded minority women — “struggling to survive the epidemic.” Another example draws from Alondra Nelson’s work, which shows how “the Black Panther Party responded to community health needs.”
Such health activism within BIPOC communities will also help articulate harms and help address needs. It will also reduce the stigma that individuals within the community face. As Jasmine Harris notes, “people of color are skeptical of voluntarily claiming disability, of self-identifying as disabled.” But, this, in turn “can further marginalize people of color with disabilities.” Such community reform renders visible, not just certain individuals, but makes certain kinds of harm articulable in ways that can help change policy.
This raises my second main point. Policy change — social and legal — is one important goal of this activism. As Angela Harris and Aysha Pamukcu suggest, “a partnership of civil rights, public health, and social justice advocates” can use a narrative of health harms to frame civil rights needs. Using this framing is particularly important now, as, they argue, we, as a nation are going through “a ‘wet cement’ moment where institutions and norms previously thought intractable have become malleable enough to be reshaped…brought on by a series of unprecedented collective crises: the novel coronavirus, climate change, and racialized state violence.”
What are the goals of these civil rights of health? Dayna Bowen Matthew argues the goal is to advance equality through social institutions. As she puts it, “institutions that are not committed to achieving health justice are simply not committed to health.” She offers a list of policies that need addressing: “fair labor laws affect access to good jobs with fair pay. School funding and anti-discrimination laws determine the extent to which all enjoy equal access to quality education. Civil rights and anti-pollution laws determine who gets clean air and water. And in America’s health care system, public and private insurance laws determine access to health care.” When such laws are unjust and discriminate based on race, they produce structural racism, with disparate impacts on individuals.
But law and society exist in a dialogic relationship with medicine. We can engage law to produce just institutions, as Matthew recommends. But, as I argue in a draft article, for these changes to truly take, we need to also address medical discourse itself. How can we do so?
Scholars like Ruqaiijah Yearby and Lindsay Wiley explain that it is necessary to correct the medical discourse itself to include within it an acknowledgment of racism. As Yearby explains, “the current [social determinant of health [SDOH] framework fails to acknowledge that structural racism is the root cause of racial health disparities.” Until understandings of SDOH in medical and public health practice are modified to do so, they are “inadequate as a means to achieve racial health equity.”
Such change requires efforts from numerous groups and a range of resources. As Jasmine Harris argues, “data matters.” Without empirical support that structural discrimination causes health disparities, we will continue to explain inequity “as the failure of individuals ill-suited for equitable participation.”
Similarly, we need to identify points of engagement between law and the medical profession itself, so that law can help transform medical understandings. Medha Makhlouf points to medical legal partnerships (MLPs). As she explains, “MLP trainers should describe how racist policies contribute to the disproportionate poverty and need for legal assistance in BIPOC communities. Trainers should identify existing laws and policies that adversely affect BIPOC and educate providers about their privileged role in anti-racist advocacy efforts.”
Further, these changes require grassroots activism — taking us back to where we began, in social movement advocacy. Social movement engagement is necessary to reform medical understandings in ways that uphold equity and autonomy. As Brietta Clark explains, if marginalized communities are not included in the early stages of health intervention planning, their subordination is only reinforced. Indeed, she writes, “Well-meaning interventions promoting healthier eating, better parenting, and stricter compliance with physician recommendations may not feel that different from interventions that have treated marginalized groups as inherent risks to be managed or contained.”
The language of medicine and health historically has been used to oppress minorities. It has placed them in double-binds, erasing their needs, and developing narratives of inherent inferiority. Through social movement advocacy and engagement, BIPOC can create their own narrative of medical need and activism. The power of the discourse of medicine and health can thus be transformed into achieving social and legal change. In turn, legal narratives can leverage medical change in ways that reflect the dialectic between the two disciplines. The struggle against medicine’s oppressive legacy will remain ongoing as advocates, lawyers, doctors, government workers, BIPOC communities, and the American public seek to uncover the liberating power of the discourse of medicine and health.
Craig Konnoth is an Associate Professor of Law and Director of the Health Law Certificate Program at the University of Colorado Law School. Konnoth is the guest editor of Understanding the Role of Race in Health, a Bill of Health digital symposium.