We’re all in this together, including the disabled
Florida may be the epicenter of COVID-19 with the number of confirmed cases skyrocketing over 500,000, but over 80% of states are seeing increased cases. While many of the young and able-bodied chafe at wearing masks and forgoing the beach, people with disabilities are concerned about having an equal shot in surviving the pandemic.
We who live in the community are appalled by the carnage in nursing homes. “They’re death pits,” Betsy McCaughey, a former lieutenant governor of New York who founded the Committee to Reduce Infection Deaths, has stated. “They’re crowded and they’re understaffed.” Roughly half of all virus deaths in Florida are linked to nursing homes.
Many disabled people are also people of color, and the crisis has highlighted racial disparities in health care. A Texas hospital denied COVID-19 treatment for Michael Hickson, a 46-year-old disabled Black man, who subsequently died on June 11.
As Ariella Z. Barker, a fellow at the Harvard Kennedy School of Government with spinal muscular atrophy, stated, “a glance into our future will likely mimic Italy’s current predicament, where they are sacrificing the medically fragile.”
Early into the crisis, with rising fear that dire medical need would outstrip medical resources, members of the Harvard Medical School Center for Bioethics wrote chillingly, “typical medical options may soon not be available to everyone.”
Yet, as concerned health care providers have said, “guidelines that evaluate patients by age or ‘comorbid conditions [that] impact survival’ or ‘underlying medical diseases that may hinder recovery’ implicitly rely on value judgments about these patients’ quality of life and deny these patients justice in our healthcare system.”
Some states have had crisis standard-of-care plans that would make functional disability fatal in a pandemic. The Tennessee plan would have withheld curative care from people with neuromuscular conditions who need help with daily living activities as well as those with permanent brain injuries. Even without such socially biased and invalid instructions, doctors choosing between a disabled and a nondisabled patient with similarly urgent levels of need and chances for survival may be encouraged to give the nondisabled patient priority out of the belief that she might recover faster, freeing up scarce resources.
Such practices are civil rights violations. Federal nondiscrimination laws including the Americans with Disabilities Act, along with comparable state laws, prohibit medical rationing measures when they result in the denial of care on the basis of disability to an individual who would benefit from it. This does not mean that disabled people jump to the head of the line in the crisis, but that they cannot be arbitrarily placed at the back of the line. These protections are absolute. They cannot be waived any more than protections against employment discrimination can be waived as job loss becomes endemic. They apply in good times and in bad.
Health care workers who are acting heroically must not be asked to pick and choose among their patients who could survive. We are all in this together.