As a wheelchair user, I am quite familiar with discrimination. I face it head on nearly every day. The moment I leave my home, I’m forced to navigate a society that was not built to accommodate people like me. Strangers often feel free to comment, “I don’t think I could live with myself if I had to use a wheelchair.” Despite all this, I was not prepared for the special risks people with disabilities face during the coronavirus pandemic.
As businesses begin to reopen across the country, hospitals still foresee rationing of medical supplies and health care. The Centers for Disease Control and Prevention have provided guidance for allocating resources in a pandemic. Yet several states — including Alabama, New York, Tennessee, Utah, Washington and my home state of Kansas — have allocation guidelines that explicitly favor giving lifesaving care to non-disabled individuals over people with disabilities.
I suffer from a degenerative neuromuscular condition. The Kansas guideline indicates that people with “advanced neuromuscular diseases” such as mine could be excluded from obtaining a ventilator or other forms of lifesaving care. If Kansas faces medical shortages and resources must be allocated, I would be placed on the back burner for receiving critical care.
Disability advocacy groups have voiced concern about guidelines such as these that blatantly discriminate against people with disabilities. On March 28, the U.S. Department of Health and Human Services published a bulletin stating that “people with disabilities … should not be put at the end of the line for health services during emergencies.”
Nevertheless, disability advocates such as myself worry that states and independent institutions could still act on discriminatory emergency protocols. No state should categorically exclude large patient populations from receiving good care.
People with disabilities also face other risks during the pandemic. Implicit and explicit bias against the disabled is widespread. According to one study, bias against disabled people is even stronger than biases against many other social groups. In the study, 76% of survey respondents showed bias in favor of people without disabilities. Other studies find that even health care professionals exhibit comparable levels of bias against people with disabilities.
Biases influence judgments, perceptions and actions. The coronavirus is already putting strain on health care workers. It is not unrealistic to worry that prejudice against those with disabilities may translate into discriminatory access to critical care.
Sen. Ben Sasse, a Nebraska Republican, has drafted model legislation to prevent such discrimination. Under the EQUAL Care Act, proposed in the Senate on May 5, states with discriminatory allocation guidelines would be blocked from receiving resources from the Strategic National Stockpile. That’s a good start.
Yet more is needed. In times of crisis, doctors and other health care workers should work even harder to avoid being influenced by stereotypes or stigma, and to treat disabled COVID-19 patients like anyone else. No disabled patient should have to receive suboptimal care because of her disability.
I’ve dealt with explicit and implicit discrimination because of my disability for more than two decades now. But I should not have to live in fear of being denied lifesaving care by the state of Kansas. And I shouldn’t have to fear inadequate care by doctors and others who hold implicit biases against the disabled.
Lauren Gibbs is a graduate student studying bioethics and science policy at Duke University in Durham, North Carolina.