Ableism Rearing Its Ugly Head: What COVID-19 Reveals About the Valuing of (Disabled) Lives
By Shanna K. Kattari
The coronavirus pandemic is terrifying to everyone, yet when people say that COVID-19 does not discriminate, that statement is wrong. We have already noted that existing illnesses in Black populations (to be clear, health disparities as a result of racism) have resulted in significantly higher rates of infection. People with disabilities and chronic illnesses (who sometimes prefer identity first language such as disabled and chronically ill), make up over a quarter of the adult population in the United States, according to this report from the Centers for Disease Control and Prevention, and when it comes down to it, access to care during this crisis is dismal for members of this population.
Some individuals have lost access to their personal care aides, due to exposure risk and lack of needed PPE. Many are not able to get to their regular medical appointments, grocery deliveries, and other such services that allow them to live their lives. Others, namely those with lupus, rheumatoid arthritis, and other autoimmune conditions, have been denied their needed medication due to the focus on hydroxychloroquine as a potential treatment for COVID-19. I myself am unable to get my greatly needed migraine shots, deemed non-essential, resulting in me entering my sixth week of having a daily migraine. Alone, these challenges are enough to cause additional stress and worry.
However, one of the biggest concerns amongst disabled and chronically ill individuals is that of medical rationing of COVID-19 related care, and access to ventilators. Some countries, and several states, released triaging policies that indicated people with disabilities should not access ventilators that could be used for non-disabled individuals. One example is Alabama (who has since taken down their policy from their website given the backlash from disability rights communities), whose policy states that “disaster-related ventilator triage protocols must be evenly and fairly implemented” but then continues with “individuals may be excluded under Tier 1 with…functional domains include cognitive, neurological, and psychosocial. For example, persons with severe mental retardation, advanced dementia, or severe traumatic brain injury may be poor candidates for ventilator support.” Kansas’s policy released by their Department of Health and Environment includes barring admission to critical care from those with “advance and irreversible immunocompromise.”
Once again, disabled and chronically ill bodies and minds are seen as less valuable than our counterparts. Those living with AIDS, as well as individuals with cystic fibrosis and other illnesses requiring home oxygen use prior to this pandemic are also included in this Tier 1 triage list. Similar policies exist (or have been proposed and withdrawn) in Tennessee, Washington, New York, Pennsylvania, and Utah. Sadly, these mandates aren’t just hypotheticals; a (non-corona virus related) terminally ill patient was taking off of a ventilator in New York (based on their aforementioned triage policies), so that the machine could be given to someone with COVID-19. Moreover, the discussion of medical rationing also doesn’t take into account the many disabled people already using ventilators on a daily basis, as noted by disability activist Alice Wong. The rationing rhetoric reinforces the idea that ventilators are for the very sick in order to get them to become healthy once again, without delving into the nuance that people can and do have high qualities of life while living on ventilators.
Law professor and disability advocate Samuel Bagenstos discusses the legal and ethical ramifications of such ableist rationing practices, noting that these policies violate several laws, including the Americans with Disabilities Act, the Rehabilitation Act, and the Affordable Care Act. He also engages questions of ethics, such as: how does one place value on a life, whether through quality of life (and what happens if a disabled patient considers themselves to have a high quality of life, while non-disabled people view it as a low quality of life?), ability to be productive in a work context, etc., and whether it matters how many lives total can be saved versus which lives can be saved. Although the Office of Civil Rights released a bulletin that rejects the concept of valuing non-disabled bodies more than disabled ones, it is hard to imagine a single bulletin being enough to stop the ableism present in medical rationing conversations and the world at large. However, it has been enough to pressure some states into explicitly stating the value of people with disabilities and their right to care during these times, as with this statement from multiple governmental and public health agencies in California and this one from the Governor of Michigan.
Around every corner are stories of people with disabilities and chronic illnesses impacted by society’s response to COVID-19. Many people are concerned about access to accessible voting if the post office should fail, as they would be denied the right to vote or, at the very least, forced to choose between getting sick/possibly dying and exercising their right to vote. Those in the middle of Social Security and Disability Insurance (SSDI) hearings are being impacted by the pause in the hearings, meaning that they have no income to support their disabled or ill selves during this international crisis. Those individuals already on SSDI who have SNAP or EBT food benefits cannot use them for many grocery delivery or curbside pickup services; yet, these are the very people for for whom going into a grocery store is unsafe.
So, what do we do?
Rather than falling back into prejudiced habits that claim certain lives are more or less worthy of sustaining than others, we must name that privilege and how ableism in inherent in our many social structures, including our healthcare systems. Disabled and chronically ill people should be part of the teams making these decisions (as should people of color, those from lower income communities, and others disproportionally impacted by COVID-19), rather than having these edicts being passed down from administrators and/or political figures who may not understand the role that ableism plays in this decision-making. Here, in Michigan, the governor has created a task force to look at the health disparities of African American individuals and how they are affected by COVID-19 at higher rates due to the ongoing impact of racism. Similar tasks forces should be created that focus on the needs and experiences of people with disabilities and chronic illness, rather than seeing us simply as an afterthought. We should be included in public health task forces within local, state, and federal governments; it is only when we are at the decision-making tables that our voices can be heard in the creation of these policies and decisions.
In the disability community, we often discuss how it is society that disables us (rather than our disabilities, medical conditions, or impairments) and how disability is simply a natural facet of human diversity. This is the social model of disability, which takes a “person in environment approach” to understanding disability in the context of society. Disabled lives are not inherently any less valuable than those of non-disabled people. However, our current state of affairs, our medical system, and the push towards medical rationing de-value these lives, naming them as less than, and continue to disable our community as we work to fight for our very right to survive.
Shanna K. Kattari, PhD, MEd, CSE, ACS is an assistant professor at the University of Michigan School of Social Work and in the Department of Women and Gender Studies (by courtesy). A queer, White, Jewish, cisgender, disabled, chronically ill Femme, her practice and community background is as a board certified sexologist, certified sexuality educator, and social justice advocate. Dr. Kattari’s research focuses on understanding how power, privilege, and oppression systematically marginalize, exclude, and discriminate against people regarding their identities/expressions through negative attitudes, policies reinforcing oppression, oppressive actions, and isolation. Her work centers on disability and ableism, and transgender/nonbinary identities and transphobia, using an intersectional lens.
