As the COVID-19 pandemic rapidly progressed in the spring of 2020, several news media outlets, commentators, and public organizations declared that the United States was experiencing a crisis of trust. The United States’ Public Health Code of Ethics states that trust in public health institutions is essential to the implementation of public health initiatives and policies. This is especially the case with large-scale interventions like the ones required to curb the spread of a global pandemic. The public’s trust plays a crucial role in the successful management of health crises. The claim that our society is experiencing a crisis of trust is worrisome. It is particularly worrisome for marginalized groups whose lives are most negatively impacted by the reverberations of the pandemic.
Amidst this discourse, however, an important point is too often lost. Trust is ineffective without trustworthiness. As ethicist Onora O’Neill notes, the popular claim that we need more trust—whether between persons, or between persons and institutions—is imprecise at best. At a practical level, placing one’s trust in untrustworthy persons or institutions is imprudent. Trusting others makes us vulnerable to them, and this vulnerability can be abused. In some situations, mistrust is warranted. The groups and individuals that bear the brunt of entrenched racial, classed, and gendered health disparities have good reasons to distrust some medical, public health, and governmental institutions. In their discussion of racial inequities in rates of participation to COVID-19 vaccine trials, Warren et al. note that “it would be wrong, as well as ineffective, to ask Black communities to simply be more trusting” in a context where it is unclear whether institutions merit increased trust from these communities. What we need as a society is not generalized trust: we need institutions we can reliably trust. Institutions must demonstrate to the populations they serve, and especially to oppressed and marginalized people, that they are trustworthy.
More so than a crisis of trust, I would argue that the COVID-19 pandemic exposed failures or deficiencies of institutional trustworthiness. This was evidenced, for example, in the case of the proliferation of medical triage policies which suggested that the lives of disabled people were worth less than those of non-disabled people. Across the United States and Canada, several triage protocols discriminated openly or implicitly against disabled patients. In Alabama, the Emergency Operations Plan instructed hospitals to withhold mechanical ventilator support from patients with severe intellectual disabilities as a last resort. Meanwhile, in Tennessee, some guidelines denied treatment to patients with muscular atrophy requiring assistance with daily tasks. In Canada, the draft COVID-19 Triage Protocol circulated to Ontario hospitals in January 2021 also emphasized a patient’s ability to perform daily tasks without assistance as a selection criterion for care allocation. In addition to being at heightened risk for contracting COVID-19 due to structural injustices, disabled people faced triage policies that were based on deeply biased assumptions about their lives and intrinsic worth.
These policies were criticized from all corners of the disability community. In the United States, advocacy groups in multiple states filed legal complaints alleging that triage protocols were discriminatory. Policies in Pennsylvania, Tennessee, Alabama, and Utah were found unlawful by the Office for Civil Rights at the U.S Department of Health and Human Services. Without the advocacy efforts of disabled people and their allies, thousands more disabled lives might have been lost than has already been the case throughout the pandemic. The triage policies put forth by state and medical institutions are not only alarming because they discriminate against a legally protected class. They are also alarming because they confirm disabled people’s mistrust of medical and public health institutions. The general message sent by discriminatory triage policies is that in a time of crisis, the lives of disabled people will not be protected in the same way as those of non-disabled people. In acting on unfounded assumptions about the lives of disabled people, medical and public health institutions failed to uphold their professional and ethical obligations to disabled people as a community. To repair the harm done, these institutions must work to establish their trustworthiness.
If I wish to convince you that I am trustworthy, the simple fact of telling you that I am is unlikely to persuade you fully. Philosopher Annette Baier remarks that the claim “Trust me!” has little sway: “either we do already trust the one who says it in which case it serves at best as reassurance, or it is properly responded to with, ‘Why should and how can I, until I have cause to?’” Instead, I must demonstrate how and why I can be trusted. Both for persons and for institutions, building trustworthiness requires time and investment. It is an active responsibility that must be translated into concrete deeds. For instance, if I wish to show to my friend that I am trustworthy, I should take good care of the plant they have asked me to water while they are on vacation. If they return home to find it dead because I have neglected to water it, they will be disappointed and question my trustworthiness. In contrast, if they come home to a thriving plant, their sense that I am trustworthy will be strengthened.
In the case which concerns us, the first step is for institutions to acknowledge that they have failed disabled people. By recognizing that they have been untrustworthy, institutions can set the table for repairing relations of trust. Of course, institutions can perfectly well admit to wrongdoing without changing any of their practices. More assurances of their trustworthiness are needed. In a longer version of this essay, I offer additional recommendations for building institutional trustworthiness in times of crisis and beyond them. One of these suggestions is that institutions should adopt an intersectional frame of analysis when analyzing the effects of public health crises. The impact of the COVID-19 pandemic on disabled people and Black people and people of color is largely discussed in a siloed manner. When COVID data is gathered, it typically considers race and disability in isolation from each other. This type of single-axis analysis overlooks the devastating effects of the pandemic on Black disabled people and disabled people of color. If institutions do not recognize overlapping forms of socially constructed vulnerability to COVID-19, it is unlikely that they can respond to them adequately, which then undermines their trustworthiness.
Another suggestion I make is that medical and public health institutions must recognize and harness the expertise of disabled people themselves. This means moving beyond token representation and involving disabled ethicists, medical doctors, patients, and activists—including especially Black, Indigenous, queer, trans, and poor disabled people and disabled people of color—in decision-making practices. Disabled people are experts at developing crisis responses that do not leave the most vulnerable people behind. This is evidenced in the many disabled mutual aid initiatives that sprouted or grew during the pandemic to respond to the needs of disabled people on the ground. Disabled people created guides about where to seek medical care or how to stock up on low-cost food items; they organized grocery deliveries; they made masks and scent-free hand sanitizer and distributed them in their neighborhoods; they also showed non-disabled people everything that could be done on the virtual communication platforms they had already been using for years. Disability justice activist and author Leah Lakshmi Piepzna-Samarasinha recently explained in an interview: “We’re supposed to be the first ones to die, but we have technology and care skills that are going to end up saving all of us. The world is terrifying, but I keep betting on us because we know how to survive.” Rather than giving in to ableist bias about competence, medical and public health institutions should also bet on disabled people’s knowledge and skills.
Untrustworthy institutions have devastating implications for the lives of oppressed and marginalized communities. The world they create is indeed terrifying, but it is not inevitable; it can be changed if institutions take on the task of building trustworthiness. As feminist bioethicists, we should also reflect on whether different forms of mistrust call for different types of assurances of trustworthiness. The mistrust of oppressed and marginalized people toward institutions that have disregarded their needs is rooted in concrete, experiential reasons. However, this should not be equated with the public’s more pervasive mistrust in news media organizations or scientific institutions, often fueled by right-wing populism. If transferred to this reality, the strategies I have identified here—examining the effects of public health crises through an intersectional lens or centering marginalized voices—may paradoxically end up adding fuel to the fire of distrust. Innovative efforts to bolster the trustworthiness of key social institutions on multiple fronts are needed to address these challenges.
Corinne Lajoie is a PhD candidate in Philosophy and Women’s, Gender, and Sexuality Studies and the Crawford Graduate Fellow in Ethical Inquiry at the Rock Ethics Institute at Penn State University. Their work on disability bridges the fields of phenomenology, ethics, bioethics, social philosophy, and feminist philosophy. Samples of their work can be found in Hypatia, The Journal of the American Philosophical Association, and the Bloomsbury Guide to the Philosophy of Disability.
