Reflecting on Health Inequities in a Global Pandemic: The Need for Disability-Conscious Public Health Strategies

“ ‘His body is so messed up!’ the nurse said, unaware that I was not sedated and could hear her perfectly,” a close friend shared as he described his recent experience in the intensive care unit during the COVID-19 pandemic. “Because I was on a ventilator, I couldn’t speak up to explain that I was born with cerebral palsy.” Encounters such as this one are shockingly common among the disability community, and raise doubts about how people with disabilities (PWD) are valued in medicine and society. Family friends relayed additional concerns about their children who have autism and other sensory needs. Because these children were unable to wear masks for extended periods, their perceived “noncompliance” frequently prevented them from accessing public spaces.

Although PWD make up 25% of the United States population, they often encounter barriers in health systems and social programs.¹ These barriers, including attitudes, inaccessible environments, and lack of accommodations, contribute to the marked health disparities experienced by PWD. Recently published research suggests there is strong physician bias against PWD.² The COVID-19 pandemic has exacerbated these health disparities and highlighted ableism, or prejudice and discrimination against PWD.³ Ableism is an unrecognized public health issue, but it can be addressed through disability consciousness, a multidisciplinary approach that incorporates perspectives of PWD and fundamental teachings from disability studies and disability justice to compel change.³ As medical students engaged in national discourse about the poor health of disabled people in our country, we advocate for disability-conscious public health strategies.

We are still lacking the fundamental tools necessary to enact effective policy change and address health equity for PWD, including disparity status for this minority group, comprehensive disability education for public health and health care students, and inclusive public health efficacy research. PWD remain unrecognized as a health disparity population despite a growing body of evidence that they experience differential, worse health outcomes that are avoidable and unjust.⁴ Importantly, failure to recognize PWD as a disparity demographic impedes data collection that is necessary to assess outcomes and drive systems change. The COVID-19 pandemic has exacerbated health inequities for many of the 61 million Americans living with disability.¹ As one example, the most significant independent risk factor for contracting SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2, which can lead to COVID-19) is having an intellectual disability. Having an intellectual or developmental disability is also one of the most significant risk factors for COVID-19 mortality, second only to age.⁵ Medical infrastructure remains largely inaccessible to PWD, which constitutes a growing public health problem. Thirty years after the passage of the Americans with Disabilities Act (ADA), the National Council of Disability’s 2021 report revealed the persistent scarcity and utilization of accessible medical diagnostic equipment.⁶ The scope and severity of these issues are alarming, especially in the context of the aging nation and increasing prevalence of “long COVID,” now recognized as a disability under the ADA.⁷ Without accessible health care clinics, screenings, and services, health care disparities will continue to worsen.

Health care trainees, such as ourselves, have become increasingly aware and concerned that ableism does not receive due public health attention. Although our didactic and clinical curricula include public health, humanities, and health systems perspectives, disability perspectives and teachings are largely absent. A 2017 survey estimated that less than 25% of medical schools provide any disability-focused training.⁸ Disability curricula that do exist tend to be sparse, highly variable, and driven by student advocates, which raises concerns about their longevity.³ Furthermore, the limited education we have received on disability contains bias that devalues the lives of PWD and reinforces ableist rhetoric. For example, outdated disability language and images are pervasive in lectures and study materials, which has frequently compelled us to advocate to faculty directly for their removal. This advocacy work can be singularly exhausting and leaves us with complex emotions, such as anger, sadness, and defeat, when we realize that disability is deprioritized at all levels of medical education.

In response, we, and many of our peers, have collaborated with faculty and disability activists to create disability-inclusive courses that attempt to fill this gap in training. Additionally, we have formed national disability advocacy groups, such as Medical Students with Disability and Chronic Illness—composed of health care trainees with disabilities or chronic illnesses and their allies—to oppose ableism in medicine and to cultivate the next generation of disability-conscious public health leaders. Our efforts seek to increase the prevalence of students and health professionals with disabilities in public health spaces and to educate nondisabled people about allyship and public health challenges unique to PWD. Interwoven through these efforts is the proactive inclusion of PWD and the amplification of their teachings, stories, and experiences.

Although we hope that disability-conscious education will translate into disability-conscious public health strategies, we need data to measure the true impact. Public health research lacks the robust data required to drive policy change for PWD. Research on the impact of COVID-19 has not routinely collected data on disability demographics.⁹ It is impossible to employ or evaluate a data-driven approach when the data for one cohort is missing. Health care decision-making must seek out and incorporate the perspectives of PWD or risk developing policies and programs that are ineffectual or oppressive for PWD.

In response to the recognition of the differential effects of COVID-19 on minority communities and the need for targeted research, the US Government created the COVID-19 Health Equity Task Force.¹⁰ The task force is an important step in addressing health inequities and mitigating future disparities. Furthermore, the Centers for Disease Control and Prevention compiled a list of recommendations for increasing the accessibility of the COVID-19 vaccine. However, recommendations will not affect practice without measures to ensure accountability. For instance, PWD report lower rates of vaccination compared with their nondisabled counterparts, despite reporting less vaccine hesitancy.¹¹ Research suggests that COVID-19–mediated barriers, including reduced transportation, inability to access the Internet, and physical inaccessibility of clinics, may be the reason for this discrepancy.¹¹ These barriers and countless others are echoed by the testimony of our community partners, our patients, and our friends. As we devise solutions to the public health problems of our time, these efforts must seek out and incorporate the perspectives of PWD to perform equitable health research and prepare for future crises.

Ableism is a public health issue that deserves immediate public health attention. Ableism is both a cause and an effect of inaccessible health systems, inadequately trained public health leaders and physicians, and exclusionary data collection. The COVID-19 pandemic accentuated the necessity for public health leaders to address inequities by employing a disability-conscious approach. Thus, the ongoing dialogue between health care students around the country, amplified by the testimony of the disability community, represents a critical moment. The prepandemic “normal” was full of barriers and inequities, but despite evidence of disparities that should compel change, the postpandemic world continues the injustice against PWD. Disability activists have often proclaimed “Nothing about us without us!” and we, as the next generation of public health leaders, must listen, learn, and act. To address the inequities highlighted by the pandemic, we advocate for public health education and research that proactively includes PWD and takes meaningful action to address ableism and promote health equity. Disability-conscious public health strategies are needed now more than ever.