The Atlantic: Americans with disabilities are terrifiedApr 3, 2020
The 50-year-old lawyer from Maplewood, New Jersey, was born with spinal muscular atrophy, a genetic disorder that makes him unable to walk or use his arms. His disability makes him more vulnerable to the virus than most people, and he’s afraid of what will happen if he ends up in the hospital with a serious case. Intubated people cannot speak, and Florio would not be able to use gestures or otherwise communicate with his doctors. Given infection-prevention rules, his caregivers would likely not be allowed to accompany him.
“I would be in an awake coma for weeks,” he told me in an interview this week. “The fear of that … it’s overwhelming.”
But Florio is afraid of something else too: the possibility that, if he contracts the virus, he could be denied lifesaving treatment because of his disability. And like other Americans with disabilities, he worries that could happen not just because of overt discrimination in hospitals, but also because of implicit bias. “People overwhelmingly believe that being disabled implies a worse quality of life than it does,” Florio said. If doctors act on those beliefs—wittingly or not—“what that means in practical terms is that people like us will die.”
In catastrophic circumstances, doctors should try to save as many lives as possible, says Matt Wynia, the director of the Center for Bioethics and Humanities at the University of Colorado at Anschutz. But equally important is protecting the country’s social fabric and preserving confidence in institutions. That can erode when people feel as if the lives of certain citizens are valued more than others. “We need to be able to look back and say we made those decisions in a way that maintains the trust of the community, that maintains social cohesion, and allows us to heal,” Wynia says.
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.
Read the full story at The Atlantic.