That means that when the time to triage comes, medical professionals should not consider a patient’s disability status, Wynia says. Ideally, patients would be given preference based on whether and to what extent treatment would help them. “If you have Down syndrome, I don’t see why that should matter, unless your Down syndrome comes with a lung condition that makes you less likely to benefit from treatment,” he says.
This is what most advocates are arguing, too. People’s fitness for treatment should be evaluated on a case-by-case basis. Disability-rights laws, such as the Americans With Disabilities Act, are “all about individual determination,” says Shira Wakschlag, the legal director at The Arc, an advocacy organization for people with intellectual disabilities. “A diagnosis is not the whole picture.”
When 33-year-old Conrad Reynoldson heard about some of the state protocols, he told me he had “a moment of sinking dread.” The Seattle attorney has Duchenne muscular dystrophy, and he’s worried that if he becomes seriously ill, his diagnosis could prevent him from getting treatment. “I’m healthy, stable, and I’m contributing to the community,” he told me. “I don’t want someone looking at my diagnoses and rationing care based on inaccurate assumptions.”
Assumptions is an important word here. People with disabilities worry that doctors, nurses, and health-care administrators may not even realize they have biases against disabled people. Research indicates that people without disabilities tend to rate the quality of life of disabled people lower than those people would, says Nancy Berlinger, a research scholar at the Hastings Center, a nonpartisan bioethics-research institute. “We do make snap judgments about whose life seems better than another person’s life,” Berlinger told me. “Allocation protocols must guard against that.”
Read: Don’t believe the COVID-19 models
The HHS Office for Civil Rights’ Saturday guidance assures Americans that the federal government will not tolerate this kind of discrimination, and the office has promised to open investigations into advocacy groups’ complaints. “We’re concerned that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care,” Roger Severino, the director of the Office for Civil Rights, wrote in the guidance.
But people with disabilities and advocacy groups want states to make clear to the public that they understand that guidance by proactively issuing statements and rewriting their emergency procedures immediately. States should indicate that they will not include diagnostic categories at all—not for intellectual and physical disabilities, and also not for diseases, such as COPD, that may make someone more vulnerable to the virus, but are also very treatable. Each diagnosis varies too greatly, they argue, for doctors to make sweeping judgments about any of them. “We want to make sure this message gets to the people who need to hear it in a very timely way,” Wakschlag says—so that both doctors and Americans with disabilities are aware of these obligations.