RACHEL MARTIN, HOST:
Many people with disabilities in this country are frightened by the coronavirus. It's not just that their health conditions make them among the most vulnerable. Some don't trust doctors or the medical system because of bad experiences with the system they feel devalues their lives and denies them care. Now there's talk of rationing medical supplies and care. And they fear they could be the last to get treatment. NPR investigative correspondent Joseph Shapiro explains.
JOSEPH SHAPIRO, BYLINE: Lax Frieden is a successful man - a research scientist, a professor at the University of Texas Health Science Center at Houston. He was a personal friend of President George H.W. Bush - used to go to the movies with him. Frieden helped write the Americans With Disabilities Act, which Bush signed into law 30 years ago. That law prohibits discrimination against people with disabilities. But none of that helped Frieden in 2006.
LEX FRIEDEN: A car ran a red light and hit us on the side of the vehicle. The impact literally threw me from the wheelchair onto the floor of the vehicle.
SHAPIRO: At the emergency room...
FRIEDEN: The doctor who was attending me said, you've got a badly injured broken hip. We've also observed that you're not walking.
SHAPIRO: Frieden's a quadriplegic, the result of another car accident years before.
FRIEDEN: And I said, no, sir. I broke my neck in 1967. And I haven't walked since then. And he said, well, we're not going to repair the hip then.
SHAPIRO: That doctor's decision, that it made no sense to fix the shattered hip of a man who would never walk anyway, turned out to be a mistake. It's led to years of trouble for Frieden. He still needs to sit up in his wheelchair. Now he can't put his weight on the broken hip. To put all his weight all day on his good hip causes pain. Now he limits how many hours he sits in his wheelchair, and that limits how much he can get around. Months after the accident, Frieden went back to the hospital and explained why he got the wrong care. The director of the ER listened and changed its policy.
FRIEDEN: They fixed it now. I mean, people who go to that emergency department with disabilities are looked at in a different framework. And I'm happy about that.
SHAPIRO: As cases of coronavirus spike, states across the country have issued rationing plans that allow ventilators and other health care to go to younger and non-disabled people first. The Civil Rights Office at the Department of Health and Human Services said, that's wrong, that people with significant disabilities can benefit just as much from that treatment. For many people with disabilities, the medical system is a place of constant fights even to get access to routine care.
ANGEL MILES: It's fairly upsetting. It's humiliating, in a way.
SHAPIRO: Angel Miles has a Ph.D. She's the health policy analyst at Access Living, a Chicago disability center. Even with her expertise, when she seeks treatment, she says she's dismissed as a black woman in a wheelchair. She reels off a list of frustrations - the doctor's office that insists she bring someone with her to help her get on their inaccessible examination table, the people in medical offices who don't even talk to her directly.
MILES: I'm often ignored. I'm often spoken at and not to. Sometimes the person next to me is addressed instead of me. And I don't even know them half the time.
SHAPIRO: Recently, Miles sued a hospital that twice gave her hospital rooms that she says were inaccessible for her with her wheelchair. She sued, in part, because with her education and her job, she feels she can make change. And that's especially important in a pandemic.
MILES: Right now, like, we can't afford to have these barriers. We can't afford to have these biases because they literally are life and death.
ALICE WONG: People who see me in a wheelchair, they see me wearing this mask over my nose that's attached to a tube that's attached to a wheelchair.
SHAPIRO: Alice Wong's portable ventilator is on the back of her wheelchair. She speaks through a plastic mask and that tube.
WONG: It's not easy, but my life is so rich.
SHAPIRO: She's an online organizer, a founder of the Disability Visibility Project. A book she edited about disability just got published. She turned 46 the other day.
WONG: It's ironic. But at a time when I'm really the most disabled I've ever been in my entire life, I've been the most active in terms of what I want to do in my life and the choices I'm making.
SHAPIRO: Technology and the medical system, especially some devoted doctors, allow her to live that active life. But she's still afraid of the medical system if it's overwhelmed by the pandemic.
WONG: I really don't think I could survive if I was, you know, affected. I just - I think about that a lot. I think about how much of a priority will I be given. Will I even get tested? Do I even have access to treatment?
SHAPIRO: In overcrowded intensive care units, doctors will be forced to make choices about who will get scarce ventilators and lifesaving care and who will go without.
Joseph Shapiro, NPR News.
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