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Excerpted From: Robyn M. Powell, Applying the Health Justice Framework to Address Health and Health Care Inequities Experienced by People with Disabilities During and after Covid-19, 96 Washington Law Review 93 (March 2021) (233 Footnotes) (Full Document)
Michael Hickson, a forty-six-year-old father of five from Texas, died in June 2020 from COVID-19 after the hospital he was being treated at decided that continuing life-saving care was futile. Hickson went into cardiac arrest three years earlier, which resulted in quadriplegia and an acquired brain injury. Since his cardiac arrest, he had been in and out of hospitals, nursing and rehabilitation facilities, and his home. In May 2020, while residing in a nursing home, Hickson tested positive for COVID-19. Weeks later, he was admitted to the hospital after experiencing difficulty breathing and a low-grade fever. Days later, Hickson's physician informed his wife that the hospital believed it was time to halt life-saving treatment. In an audio recording, which has since gone viral, Hickson's wife pleaded with the physician to continue care and raised concerns that decisions about his care were being made based on erroneous assumptions about the quality of his life.
Hickson's wife failed to convince her husband's legal guardian, physician, or the court to continue his treatment. Hickson died only a few days after that shocking conversation with his physician. Disability rights advocates quickly rallied around Hickson's wife, averring that stopping his treatment exemplifies grave presumptions about the intrinsic value of disabled peoples' lives. Similarly, the National Council on Disability, an independent federal agency that advises the President and Congress on disability policy, issued a statement condemning the denial of life-saving treatment for Hickson, saying,
The presence of a disability does not lessen a person's value, nor should it warrant a person's abandonment by the medical facilities they rely on for care. When a medical facility makes a decision to deny medical care to a person with a disability that is based on, or influenced by, biased views about life with a disability, it runs afoul of federal civil rights laws.
Regrettably, Hickson's tragic experiences are neither unique nor uncommon. The COVID-19 pandemic has wreaked havoc on the lives of millions of people, both in the United States and across the globe. At the time of this writing, over twenty-six million people in the United States have been infected with COVID-19, and nearly half a million people have died from the virus. For socially marginalized populations, including people with disabilities, the virus has been particularly devastating, exposing longstanding and pervasive health and social inequities.
Although the research is still in its infancy, emerging studies suggest that people with disabilities are disproportionately affected by COVID-19. Specifically, compared to nondisabled people, people with disabilities experience disparities in exposure to the virus, inequities in susceptibility to contracting the virus, and barriers in accessing treatment and testing. Moreover, a developing body of scholarship examines whether state and hospital triage policies that ration critical health care and resources for people with disabilities violate federal disability rights laws.
Certainly, the injustices that Hickson experienced did not happen in a vacuum but, rather, are emblematic of deeply rooted inequities that have festered for too long. Comprehensively examining the disparities that people with disabilities experience and how law and policy affect such disparities is necessary. Undoubtedly, the inequalities plaguing disabled people during the pandemic extend beyond the rationing of health care and resources and adverse health outcomes and instead affect all social determinants of health. Social determinants of health are factors that influence one's wellbeing, including health and health care, neighborhood and built environment, economic stability, education, and social and community context. For example, during the COVID-19 pandemic, people with disabilities are experiencing declining employment rates, rising barriers to receiving free and appropriate public education, growing social isolation, and mounting risks of interpersonal violence. While worsening due to the pandemic, disabled people have always contended with structural injustices that contribute to adverse health and social outcomes. As Jasmine Harris aptly stated, “the rationing problem is not just about devaluation of the lives of individuals with disabilities; it is a symptom of something much deeper. The pervasive and negative impacts of this devaluation will endure long after the immediate healthcare issues are tackled.”
This Article, therefore, calls for wide-ranging and robust legal and policy responses that address people with disabilities' immediate needs during the COVID-19 pandemic as well as the root problems that have caused pervasive and longstanding inequities. To that end, this Article draws from health justice, an emergent framework for eradicating health inequities experienced by socially marginalized populations. Health justice, as a jurisprudential and legislative framework, is aimed at achieving both health equity and social justice. It demands that legal professionals and policymakers, in collaboration with people with disabilities, protect and support disabled peoples' needs and rights both during and after the COVID-19 pandemic by comprehensively responding to the “economic, cultural, societal, environmental, and social conditions” that cause inequities. In short, the health and health inequities that people with disabilities are experiencing during the COVID-19 pandemic are striking failures of justice and necessitate addressing their core institutional and structural foundations.
This Article builds on, incorporates, and extends the existing scholarship about COVID-19 and disabled people. Part I provides an overview of the health and health care experiences of people with disabilities. Specifically, this Part describes the legal framework that governs health and health care access for disabled people. It then limns the health and health care inequities that people with disabilities experience, both before and during the COVID-19 pandemic, demonstrating that the current disparities are a continuation of long-lasting and deeply entrenched problems. Thereafter, Part II presents the health justice framework and its application to people with disabilities. Finally, applying the heath justice framework, Part III concludes by drawing from the social determinants of health to suggest legal and policy solutions to address people with disabilities' immediate needs as well as a path forward for dismantling the roots of longstanding health and social inequities that disabled people experience.
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The COVID-19 pandemic has wreaked havoc on the lives of millions of people, both in the United States and across the globe. For socially marginalized populations, including people with disabilities, the virus has been particularly devastating, exposing longstanding and pervasive health and social inequities. As such, legal professionals, policymakers, and scholars should undertake a comprehensive examination of the inequalities that people with disabilities experience and how law and policy affect such disparities. This Article, therefore, builds on, incorporates, and extends the existing scholarship about COVID-19 and disabled people by positioning it within the health justice framework and proposing normative legal and policy solutions to address deeply entrenched inequities that affect people with disabilities during the COVID-19 pandemic and beyond.
Robyn M. Powell, PhD, JD is a Visiting Assistant Professor at Stetson University College of Law.
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