Communities and Health Justice

Drawing on the thick social science literature about “community,” we understand communities to be “relatively wide and deep social groups: the more extensive the shared activities and the more wholly that group members participate in, identify with, and take responsibility for the group, the stronger is its community nature.”Reference Galarneau⁵ We understand communities as subnational in scope, sharing history, culture, place, goals, or experiences. The communities highlighted in the health justice literature are typically identified generally as “marginalized,” “impacted,” “affected,” and “historically subordinated” communities. Communities are also sometimes more specifically named: the Black community, communities of color, LGBT, immigrant and low income communities, also local communities.Reference Benfer, Mohapatra, Wiley and Yearby⁶ As we discuss below, these and other communities play significant roles in the health arena that make them critical moral actors in the creation of the meanings of justice.

Several features of communities are vital to understand. First, many communities are constituted by multiple smaller, often overlapping communities, for example, most local communities have numerous ethnic, religious, and other communities within them. Another feature is that communities have somewhat fluid memberships as members’ community identification and involvement shift over time. Relatedly, while a community holds something in common, a community’s members are not homogeneous in belief or in practice. Notably, many persons are simultaneously members of multiple communities, communities that may hold compatible and/or conflicting values regarding health and health care. Furthermore, communities are relationally connected to larger social collectivities — society or the nation, as well as to smaller collectivities such as families. Finally, communities vary significantly in power and stability, a feature of communities that makes them highly salient to health justice.

Health and health care are often framed as societal or as individual goods, overlooking the fact that they are also community goods, perhaps even primarily community goods due to the many critical ways that communities are involved in health care and public health.⁷ We mention four of those critical ways here. First, communities as “spaces” contribute to the health and illness of its community members as well as of the community as a whole. Together the physical and social environments of a community condition human health. The quality of the water and air; the presence of toxins, violence, segregation, social solidarity and much more contribute to making us healthy or ill. The contagion of infectious disease makes clear how important the interrelatedness within and among communities is to health.

Second, health activities, be they health care or public health efforts, take place largely in local communities: geo-politically defined areas wherein health care institutions and practitioners and public health departments care for the health and illness of individuals and of the community. Cultural and religious communities also offer such care as do community building organizations that work to empower communities. Third, communities as a whole and their individual community members are impacted by the presence or lack thereof of public health and health care activities beyond their immediate health effects. One such way is that health systems support other core community institutions and functions including schools, political governance, and economic stability. Another way is that health systems may provide community leadership and participation opportunities, thus contributing to community cohesion and/or to community distress.

Finally, and the focus of our ethical attention here, communities are important sites of meaning-making. While the individualistic biological meanings of health, disease, and healing promoted by professional biomedical communities dominate the US health landscape, public health approaches that understand health and healing as fundamentally shaped by social, political, economic, and cultural factors are also significantly present. Meaning-making about health/health care also takes place in numerous cultural and religious communities: Indigenous, Black, Latinx, Christian Scientist, and other communities create, recreate, and embrace community-specific ideas and values regarding life, health, healing, and death. Various health movements including the 20th century women’s health movement, the disability rights movement, and the anti-racism movement are broad communities that have created alternative understandings to dominant ways of thinking. These activist and scholarly efforts — to demedicalize childbirth and menopause, to understand “domestic” and police violence and racism as public health concerns, and to frame disability as a social rather than a biomedical concern — show the power of community meaning-making to shape health and care and hence, to inform notions of health justice.

Together these four types of community involvement in health/health care show how deeply and complexly engaged communities are in health/health care. But communities are not “equally” engaged. In its focus on health disparities and its call for greater community engagement, the health justice movement underscores the fact that not all communities experience the same health shaping conditions and thus health status; the same care for their health and well-being; nor do they gain equal benefits from health activities. Moreover, not all communities have their understandings of health and health care heard, seriously considered, or responded to. In other words, communities are accorded unequal power and respect in the health arena. One example is when marginalized communities as a whole as well as their community members are treated as solely responsible for their ill health, or as inherently powerless, and thus become “targets of discipline or charity” rather than participants in the meaning-making regarding their care and justice.⁸

As noted above, health justice understands that as a matter of social justice, the elimination of health disparities involves marginalized communities becoming more fully engaged and empowered. Here an important ethical question arises: what is it about community engagement and empowerment that makes it a core commitment of and essential to health justice? The answer to this question we believe is found in a (largely) latent assumption in the health justice framework, namely that community engagement/empowerment signifies respect for community. We suggest that respect for communities be recognized, developed, and codified as an ethical principle requisite for health justice. In other words, a principle of respect for communities should become an explicit moral norm and standard that serves as a criterion for guiding and assessing health justice frameworks as well as for the policies and laws proposed in health justice’s name.

Toward a Principle of Respect for Communities as Requisite for Health Justice

What is needed is an ethically robust, full-fledged principle of respect for communities. In this section we begin to give substance to this principle by demonstrating how this link between respect for communities and health justice echoes the close association between justice and respect found in community activism and in some theories of justice. Next, we sketch a community-relevant notion of respect; and finally, we highlight a principle of respect for communities that has been proposed in research ethics.

The chant, “We can’t get no justice; no respect” was repeated by protestors in Ferguson, Missouri, in response to the 2014 death of Michael Brown and more generally to police violence in Black communities.⁹ This close tie between justice and respect is found also in some philosophical theories of justice. Here we note two theories that affirm respect for social groups including communities as foundationally important to justice. Michael Walzer’s theory of complex equality posits justice as respect for the communal meanings given to social goods.” He writes:

According to this particularist notion of justice, groups “must figure out for themselves what justice requires” in relation to social goods including health and health care.Reference Walzer¹¹ Communities have normative conceptions of justice, whether implicitly embraced in their praxes or explicitly stated and then operationalized in various ways.

Similarly in his liberal-communitarian conception of justice, Ezekiel Emanuel argues that “[j]ustice is not realized by comparing entitlements to individual services, but by respecting the community’s particular conception of the good life in its distribution of goods.”Reference Emanuel¹² In this perspective, different communities have different shared values, traditions, and practices and all commit to respectful democratic deliberation among various community-based notions of justice. Both these theories of justice seek to respect community voices and values in health care. In this way, they resonate with health justice’s explicit commitment to “collective action grounded in community engagement and empowerment” and with its implicit commitment to respect community values and priorities.¹³

To understand justice as respect we need to appreciate what it means to respect. And specifically, what it means to respect communities. Among the many philosophical and psychological meanings of respect is the idea that to respect means to give serious consideration. To respect is to respond with what philosopher Robin Dillon calls perceptive attention: “The person who respects something pays attention to it and perceives it differently from someone who does not and responds in light of that perception.”¹⁴ Conversely, disrespect for something is shown by “being oblivious or indifferent to it, ignoring or quickly dismissing it, neglecting or disregarding it, or carelessly or intentionally misidentifying it.”¹⁵ According to sociologist Sara Lawrence-Lightfoot, attention is a key dimension of respect: “When we are respectful of another, we offer our full, undiluted attention. We are fully present, completely in the room … sometimes engaged in vigorous conversation, sometimes bearing silent witness.”¹⁶ Though typically framed in terms of respect for individual persons, these understandings of respect are also relevant to communities.

In the ethics of health research realm, Emanuel and Charles Weijer have called for a principle of respect for communities based on their belief that “communities have values and interests worthy of protection.”Reference Emanuel, Weijer, Childress, Meslin and Shapiro¹⁷ This principle, they argue, bestows “upon the researcher an obligation to respect the values and interests of the community in research.”¹⁸ It is worth emphasizing that this protection is not grounded in the vulnerability or historical marginalization of communities but rather in the moral worthiness of communities, including the shared meanings and values they have created.

The claim that communities are moral entities worthy of an obligation of respect or justice is not uncontroversial as some commentators believe that only persons, not social groups, have moral standing.¹⁹ With Emanuel and Weijer, we believe that communities are more than the sum of their individual members and are deserving of moral standing.²⁰ Precisely because communities are important sites of meaning-making about social goods including health and health care, communities are moral entities worthy of “collective respect.”Reference Miller²¹

In sum, the principle of respect for communities embedded in health justice entails giving serious and perceptive attention to the health-related community norms and values embraced by community members. As philosopher Yolonda Wilson reminds us, “a Black feminist conception of justice foregrounds the needs of the overall community…The community rises and falls together, and so justice must account for the whole, not merely the well-heeled.”²² To disregard such community values would be to disrespect communities and thus to treat them unjustly.

Operationalizing a Principle of Respect for Communities: Two Key Challenges

We identify two significant challenges to the principle of respect for communities in health justice that must be acknowledged and engaged. First, as Miller has noted, is that “collective respect is unevenly distributed.”²³ This inequity is reflected in health justice’s focus on marginalized communities, that is, on communities whose understandings, needs, priorities, and values are not listened to, seriously considered, and adequately responded to in health-related policy making. In Lawrence-Lightfoot’s words, “respect creates a relational, generative symmetry”²⁴ and that symmetry is related to empowerment: “When we are respectful of others, we want to offer them the knowledge, skills, and resources that they need that will allow them to make their own decisions and take control of their lives.”²⁵ Likewise, say Harris and Pamukcu, empowerment is “collective power and control.”Reference Harris and Pamukcu²⁶

The health justice movement has produced numerous community empowerment strategies. One example is the community-defined and community-based research efforts that seek to shift power to communities.²⁷ In another example, organizations like the Praxis Project work to build community power so that health “[i]nterventions will be better aligned with community-defined health priorities.”²⁸ This Project encourages public health initiatives to build relationships with community organizations “based on respect for their experience and expertise.”²⁹ Yet another strategy is Truth and Reconciliation Commissions, especially local in scope, wherein communal “narratives and lived experience drive the agenda for social change” for implementing the principle of respect for communities within a health justice framework.³⁰ These empowerment strategies work to more evenly distribute community respect and thus fulfill the principle of respect for communities.

The second significant challenge for the operationalization of the principle of respect for communities is that of democratic deliberation in light of diverse ethical values. The heterogeneity of health meanings, values, and priorities within and among communities presents an abiding challenge for democratic decision-making in the health arena. This includes the challenge of dealing with community values that some deem fundamentally disrespectful or unjust. Nearly every community is internally diverse in its diverse values and priorities. Similarly different communities hold different health related values. The principle of respect for communities means that these heterogeneities of values must be recognized and seriously considered in community based decision-making processes that are understood as just. The challenge is exacerbated by the absence of political governance infrastructures that respect communities in health-related decision-making.

A decade ago, Lawrence-Lightfoot lamented, “The shadows of darkness and violence that have preoccupied us recently compel us to recognize how very precious and fragile are our democratic principles, how very hard it is to sustain and nourish respect, and how complex the work of authentic inclusivity turns out to be.”³¹ These concerns remain today. Nevertheless, the rising health justice movement holds promise for improving the health and well-being of all communities. It will gain ethical power and coherence in mitigating the impact of health disparities when it recognizes, develops, and operationalizes an ethical principle of respect for communities.