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Excerpted From: Amanda M. Caleb and Stacy Gallin, Policies of Exclusion: The Impact of Covid-19 on People with Disabilities, 14 Saint Louis University Journal of Health Law & Policy 321 (2021) (167 Footnotes) (Full Document)
“The Government should acknowledge persons with disabilities in the same time as they include others. They will go right past us, and leave us out if we don't speak out.” These words, spoken by Susan, a deafblind woman living in Massachusetts, encapsulate the feelings of many people with disabilities (PwDs): a sense of exclusion has been exacerbated by the COVID-19 pandemic and related policies, which, while intended to protect the health of the population, have led to the further marginalization of PwDs. For the approximately 61.4 million adults (25.7% of the population) in the United States who report a disability, COVID-19 has further exposed the systemic inequities they face; these include unmet health care needs due to cost (31.4% of PwDs, ages 18-34), lack of internet access (54%, compared to 85% of all U.S. adults), and inadequate transportation (34%, compared to 16% of all U.S. adults). Early research from the United States and the United Kingdom suggests that people with intellectual disabilities are dying from COVID-19 at rates between three and six times higher than people without intellectual disabilities.
The health outcomes related to these statistics are not, in fact, products of individual bodies (impairments) but rather of social, cultural, and political models that have historically marginalized PwDs and created the notion of disability as oppositional to normal, a statistical average of what people should be able to do. Understanding disability as a product of historical, cultural, and political discourses (i.e., systems designed to contain and control individuals as part of the body politic) complicates both the reporting about disability and our response to disability, moving it away from an individual-only issue to an issue of structural injustice. The dividing practices embedded in disability--how a PwD becomes a disabled person, linguistically, medically, and politically--is an example of Foucault's biopower, the means by which a state controls the national body by regulating the individual body. Framed within neoliberalism, disability becomes that which has decreased value because of its decreased usefulness--its dis-ability.
Biopower during a pandemic is even more pronounced, particularly for PwDs who experience increased levels of control via restrictions that may impact their health and mental wellbeing. Pandemic responses are about regulating bodies--both “sick” and “healthy” ones--in an effort to reduce disease transmission. Quarantine and isolation strategies, social distancing policies, and shelter-in-place mandates all serve to control the movement of bodies and the movement of disease itself. None of this is bad from a public health standpoint; however, the balance of pandemic biopower is delicate, as the very nature of these policies is built upon modes of difference (i.e. sick vs. healthy). Acts of control that are informed by a neoliberal sentiment of value and product(ivity) are often implied in decisions such as the allocation of scarce resources and vaccination distribution--risk the further marginalization and subsequent health of PwDs.
For those in minoritized communities, the failings we are witnessing are merely a case study of the exacerbation of a broken system for which equity and justice do not apply to all people. Particularly for PwDs, the national response to COVID-19 has proven to be a continuation of our country's tendency towards structural ableism, both in practice and policy. The bioethical foundations of autonomy, beneficence, nonmaleficence, and justice have continuously been violated with respect to the care of people with disabilities, thus creating an environment of distrust of the medical profession. In non-pandemic times, “our country has forced sterilizations of people with mental illnesses and developmental disabilities, exploited institutionalized persons with disabilities for research, and instituted routine use of prenatal genetic testing that raises concerns about devaluing and increasing hostility towards disabled people--to name a few.” Data on the treatment of PwDs during crises such as 9/11, the H1N1 pandemic, and Hurricane Katrina are limited, yet one glaring finding from these emergencies that has been highlighted by the media is the failure to properly care for and evacuate those with disabilities, leaving them to suffer and die in favor of saving the able-bodied. This history of medical mistreatment and abuse of PwDs calls into question the standards of care, policies, and practice being utilized as the world struggles to deal with COVID-19.
COVID-19 has exacerbated the already numerous challenges facing PwDs in health care. Just as it has for other minoritized groups, the pandemic has highlighted systemic discrimination and inequalities confronting those with disabilities. The current strain on the global health system is unprecedented in modern times, thus making it incredibly difficult to mandate any type of immediate reforms to a system that was already in need of repair before the pandemic hit. However, strides made in disability studies and bioethics should not be ignored in favor of “catastrophe ethics” invoked in times of crisis. As argued by multiple scholars in a recent Hastings Center Report article, “there is a moral duty to shine a light on structural disability bias that may distort how crisis standards of care are put into practice.” Therefore, it is necessary to examine these public health policies and standards of care policies and how they are being practically applied to ensure that the rights of PwDs are being protected and to take action if and when improvement is needed.
This Article analyzes how health policies implemented during the COVID-19 pandemic act within a biopower that further marginalizes PwDs. Divided into four sections, this Article first discusses public health policies that were implemented during the pandemic that, while intending to be inclusive, were modes of exclusion of PwDs, through social distancing guidelines and the use of remote health care. Second, this Article analyzes diagnostic care in light of triage policies for the scarce allocation of resources and the harm of such policies on PwDs. Third, this Article considers the concept of social utility as it applies to early vaccine prioritization and the ramifications for PwDs. Lastly, this Article offers recommendations for changes in policy and practice that allow for better accessibility and inclusion.
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Rather than viewing COVID-19 as a once-in-a-lifetime pandemic for which global health systems could not adequately prepare, we need to understand it in light of systemic inequalities that have exacerbated the health impacts on marginalized groups, especially PwDs. It is important that we do not allow a crisis situation to be an excuse to further marginalize a group by neglecting their moral and legal rights to fair treatment and care. As the one-year anniversary of the discovery of the coronavirus approaches, society has begun to acknowledge the unjust, unethical, and ineffective methods that have been haphazardly put into effect to deal with this crisis and the effect these policies have had on the disabled community. The challenge we now face is to remedy these policies of exclusion.
Amanda M. Caleb is Professor and Director of Medical and Health Humanities and Professor of English at Misericordia University..
Stacy Gallin is the Founder and Director of the Maimonides Institute for Medicine, Ethics, and the Holocaust. She is currently a Visiting Assistant Professor of Medicine, Biomedical Ethics and Humanities Program at New York Medical College.
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