July 26, 2020 marked the 30th anniversary of the Americans with Disabilities Act (ADA). The ADA provides civil rights legislation affording persons with disabilities legal protection from discrimination. The ADA is specifically the protection that should serve persons with disabilities during a pandemic like COVID-19. However, 90 days into the pandemic according to Marcie Roth, CEO of World Institute on Disability, “of the 43 percent of COVID-19 deaths attributed to congregate facilities, almost 100 percent are disabled people.”
COVID-19 impacts people with disabilities more disproportionately than other disasters, with devastating outcomes. Under “usual” circumstances, people with disabilities are two to four times more likely to be injured or die in disasters, due to inadequate community-wide planning and access to emergency and disaster assistance. Black, Brown and Indigenous disabled people and others at the intersections of oppression comprise the vast majority of lives lost. Despite this, little attention has been given to people with disabilities in the press and through research.
People with disabilities comprise more than a quarter of adults and 20 percent of children in the nation, and are represented across all geographies and all age, sex, racial, and ethnic subgroups of society. One in four Black people are disabled. Notwithstanding federal laws requiring equal treatment and prohibiting discrimination, people with disabilities often remain an afterthought, living as invisible citizens. People with disabilities are equally marginalized in health care.
Contrary to legal and policy standards requiring the provision of reliable preventative and treatment advice, accessible information about COVID-19 (e.g., Braille, plain language, American Sign Language) has been neither immediately nor consistently available since the pandemic began.
Moreover, there are systemic issues, including inadequate federal and state funding for home- and community-based services; a lack of accessible, affordable and quality housing; the privatization of congregate care living options; and the bias against Medicaid—the major funder of long-term care.
Nursing homes with a significant number of Black and Latino residents have been twice as likely to be hit by the coronavirus as those where the population is overwhelmingly White. Underpinnings of the immense disparities were witnessed in New York, the epicenter of the US pandemic. In New York, the age-adjusted death rate per 100,000 persons or White New Yorkers is 27 and doubles and quadruples for Blacks, Latinos, and Asian New Yorkers.
Democratic New York Gov. Andrew Cuomo is at the center of an escalating controversy over deaths in long term care facilities, how they were counted and how they handled requests for that data. In addition to the issues inherent in living with a disability, some disabled people feel more acutely hurt by the long-term isolation, forced dislocation, disruption, and restrictions, than by fear of COVID-19 itself.
In Texas, Michael Hickson, a 46-year-old father of five was sick with COVID-19 when doctors reached a crossroads in his treatment. He had pneumonia in both lungs, a urinary tract infection and sepsis — a dangerous immune response leading to multi-system organ failure. Michael needed a ventilator to help him continue breathing, but the hospital felt further intervention for the disabled man was futile. A doctor explained to the family that there was little hope Hickson would survive or regain “quality of life.”
Hickson’s sister, a physician, agreed with his care team. So did the agency acting as his legal guardian. But Michael’s wife, Melissa Hickson, was appalled, horrified doctors were placing less value on her husband’s life because he was a Black man who was disabled.
Michael’s case shines a spotlight on issues of race and disability, including the different ways individuals, even within the same family, assess what makes a life worth living.
In the days after his death, the audio recording shared by Michael’s wife created a furor among disability rights activists across the country. Their outrage has been echoed by faith-based organizations and antiabortion groups, which have argued that stopping Michael’s treatment was tantamount to failing to recognize the inherent value of a human life.
Though the COVID-19 vaccine has been available for many weeks, California officials were among the first to announce just last week Friday that people ages 16 to 64 who are disabled or at high risk for morbidity and mortality from COVID-19 will be eligible for vaccination in the middle of March. But is isn’t just the US that is under fire for their negligence and outright abandonment. Disability rights advocates in Britain are condemning the discriminatory response by the government and hospitals in treating COVID-19 patients with mental disabilities. A recent investigation found “do not resuscitate” orders were given to people because they had mental disabilities, causing potentially avoidable deaths.
There’s a dark history of disabled people being actively erased, through mass institutionalization, forced sterilization, and outright killing. This makes it seemingly easy in a supposedly enlightened nation to think that actual hatred of disabled people exists only in the past.
Imagine listening as the messaging at the start of the pandemic emphasized that only the elderly, disabled, and chronically ill people were at risk and less worthy of saving. The horrible sinking feeling that must have fallen heavily in the pit of a human being’s belly as they listened to members of Congress openly arguing that high-risk Americans should be willing to die in order to keep the economy humming. The public was repeatedly encouraged because COVID-19 death was an issue for people with “pre-existing conditions.” In fact, COVID skepticism itself is strongly influenced by the idea that the virus is really only a problem for others, namely elderly, chronically ill, and disabled people – as if that makes it less of a problem.
Or does it?