Breathing Lessons: Disability Rights in the Wake of COVID-19

The novel coronavirus (COVID-19) has provoked an unprecedented reality for much of the global population by streamlining widespread bureaucratic frustration, health anxiety, and social distancing. Most people know that older adults and people with underlying health conditions are disproportionately affected by COVID-19, although many people fall under both these categories and identify with a disability. Also, due to the limited resources available to treat people with COVID-19, concerns have emerged about who receives what type of care. This would force health providers with the grim task of dictating whose lives are worth saving. This blog addresses concerns about rationing care amid the influx of COVID-19 patients and how this might affect the largest minority group in the United States (26%) and world (15%), people with disabilities.

Word Health Organization suggests COVID-19 is particularly threatening to people with disabilities for a list of reasons: (1) barriers to implementing proper hygienic measures, (2) difficulty in social distancing, (3) the need to touch things for physical support (e.g. assistance devices; railings), (4) barriers to accessing public health information, and (5) the potential exacerbation of existing health issues. These issues add insult to injury because, even without COVID-19, people with disabilities by-and-large receive inadequate access to health care services. This is largely due to the competitive nature of health systems which value profit maximization and, thus, disadvantage people with disabilities as consumers in the health care market.

Recently, select states and hospitals have issued guidelines for health providers that would potentially deny people with disabilities treatment for COVID-19. Two entities, Alabama Department of Public Health (ADPH) and Washington State Department of Public Health (WSDPH), have recently come under scrutiny because of their efforts to fulfill such guidelines.

ADPH’s Emergency Operations Plan suggests that ventilator support would be denied to patients with “severe of profound mental retardation”, “moderate to severe dementia”, and “severe traumatic brain injury”. This controversial protocol has recently grabbed the attention of Alabama Disability Advocacy Program and The Arc thus leading to a complaint with U.S. Department of Health and Human Services Office for Civil Rights (OCR) regarding discrimination toward people with intellectual and cognitive disabilities.

With Washington notoriously being one of the first COVID-19 hotspots, WSDPH and the University of Washington Medical Center have come under fire for their plans to develop a protocol that would allow health providers to access a patient’s age, health status, and chances of survival to determine treatment and comfort care. These efforts have been confronted by Disabilities Rights Washington with their own complaint to OCR that declares any medical plan that discriminates against people with disabilities effectively violates the their rights and is, therefore, unlawful.

OCR swiftly responded to these concerns, as well as those from Kansas and Tennessee, by stating that, even in the case of pandemics, hospitals and doctors cannot undermine the care of people with disabilities and older adults. OCR Director Roger Severino exclaimed, “We’re concerned that crisis standards of care may start relying on value judgments as to the relative worth of one human being versus another, based on the presence or absence of disability,” and “…that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care.”

Also, with New York currently having most of the U.S.’s confirmed COVID-19 cases, they may very well be the first state to face the imbalance of available ventilators and patient demand. Disability advocates have recently decried verbiage in New York’s Public Readiness and Emergency Preparedness (PREP) Act that could provide immunity from civil rights for some patients. Thus, U.S. state and federal powers are playing tug-of-war with the status of disability rights during the COVID-19 crisis.

Not Today #COVID19 Sign Resting on a Wooden Stool.
Not Today COVID-19 Sign on Wooden Stool. Source: Pexels, Creative Commons.

However, these concerns are not limited to the U.S. In the developing world, many people with disabilities are segregated from their communities in overcrowded facilities, while thousands of others are shackled and incarcerated. This weak enforcement of disability rights positions people with disabilities, in countries such as Brazil, Croatia, Ghana, India, Indonesia, and Russia, at-risk of further inhumane treatment by receiving limited or no appropriate care related to COVID-19. As a result, Human Rights Watch urges state and local authorities to return these populations to their families and demand they provide needed support and services within their communities.

Nearly every country in the world has ratified the United Nations’ Convention on Rights of Persons with Disabilities (CRPD) which aims to fulfill the human rights and fundamental freedoms of people with disabilities. More specifically, Article 25 of CRPD suggests people with disabilities have the right to non-discriminatory health care and population-based public health programs. Thus, nearly every person with a disability around the globe is associated with a governmental power that claims to be dedicated to fulfilling the promise of CRPD. However, in the wake of COVID-19, will these words be put into action?

These unprecedented events are a turning point for how we view our bodies, health, and communities. This is also an opportunity to view the world through the perspective of those in your community such as people with disabilities who represent an array of impairments, challenges, and experiences. Despite boredom and apathy being at the forefront of many people’s isolation, images of life versus death surround others, and for a good reason. In these decisive weeks, and likely months, there has never been a greater time for people in the U.S. and abroad to acknowledge that disability rights are human rights.

A Time to Recognize and Safeguard The Rights That Connect Us

by Peter Verbeek, Ph.D. (Associate Professor, Program Director MA Anthropology of Peace and Human Rights)

A picture of a girl with a surgical mask covering her mouth and nose
Source: Yahoo Images

On March 6, 2020, the UN High Commissioner for Human Rights, Michelle Bachelet, issued a statement calling for an holistic human rights based approach to combat COVID-19. She wrote, “As a medical doctor, I understand the need for a range of steps to combat COVID-19, and as a former head of government, I understand the often difficult balancing act when hard decisions need to be taken.” However our efforts to combat this virus won’t work unless we approach it holistically, which means taking great care to protect the most vulnerable and neglected people in society, both medically and economically.” She added, “COVID-19 is a test for our societies, and we are all learning and adapting as we respond to the virus. Human dignity and rights need to be front and centre in that effort, not an afterthought.” 

To heed Dr. Bachelet’s call we must remind ourselves of the fact that human rights are universal and inalienable, indivisible, interdependent and interrelated. We also must recognize that the essence of human rights is human dignity. All human rights arise from it and all human beings are born with it and posses it throughout their life span. Human dignity is not measured on a sliding scale. To illustrate, there is no difference in human dignity between that of the office holder of the Presidency of the United States and the migrant at the US Southern border. The accused in the court proceeding has the same human dignity as the judge presiding over her case. The convict and the prison guard do not differ in their human dignity. The human dignity of the disabled veteran is the same as that of the person pushing her wheelchair. And the human dignity of the COVID-19 patient in the isolation ward is the same as that of the health-care worker taking care of him. 

The recognition of our shared human dignity and the safeguarding of the rights that arise from it is a powerful unifier in troubled times. Now that we are faced with a near global outbreak of an until recently unidentified corona virus we can stand united in the recognition that every person on this Earth has an irrevocable right to health care and security in the case of illness (UDHR, Article 25). With rights come responsibilities, and the unifying power of universal human rights is the way that each of us in accordance with our specific context and abilities has a role to play in safeguarding access to appropriate preventive and interventional health care and personal security regarding COVID-19. Our individual roles are necessarily varied, from driving a neighbor without proper means of transportation to a health care facility, to following “doctor’s orders” concerning personal hygiene or social distancing. If infected or taken ill we have a right to receive the best available care and the responsibility to follow the guidelines in place so as to minimize the risk of infecting others. Each of us has a responsibility to listen to the relevant and evolving science as communicated by medical experts, and each of us has the responsibility to comply with the local and national guidelines that are based on this science. 

Some of those taken ill with COVID-19 will die in spite of our best efforts to care for them and protect them. If the fight to save their life is at the cusp of being lost we have the responsibility to see to it that their death reflects the human dignity that they possess. Medical science does not yet have the answer to the question of how to protect oneself conclusively against viral infections such as the current corona virus. That realization, while sobering, should not keep us from doing all we can in terms of what we do know about prevention. There is much that we can do to limit the risk of infection, provided we follow the relevant science. The human rights motto is that any infection, or worse, any death, linked to insufficient preventive measures is one too many, and we all stand united in this through the human dignity that each of us possesses.