The other night, I found myself still wide awake in the early morning hours, trying to slow the rhythm of my breathing. I’d just read yet another article on the ethical dilemma of rationing health care in the face of the ever-growing coronavirus pandemic. I was terrified. I finally drifted off to sleep, only to have a nightmare that I was in a locked ward with hundreds of other disabled people who had all been left to wait out the effects of the illness without any medical intervention. At the very least, this was a sign that I needed to stop scrolling through social media before bed. But even if it was just a bad dream, it felt a little too close to our looming reality for comfort.
As a physically disabled woman who uses a wheelchair, it’s pretty commonplace for me to run into reminders that society deems my life and the lives of people in my community less valuable than those of nondisabled people. These reminders have built up over my lifetime like a thousand little cuts that never heal.
I feel the familiar sting of being seen as unworthy every time I try to find a spot for my wheelchair at an event, only to be told that I have to move because I’m presenting a fire hazard. Never mind that I’m a human being sitting on those wheels that are taking up space. If there’s an emergency, it doesn’t matter that I need to get out quickly like everyone else — I’m just in the way.
I feel the sting of unworthiness every time I take an elevator and there’s a sign staring me in the face that says, “In case of emergency, take stairs.” It might as well read, “In case of emergency, you’re trapped.” I remember vividly a frightening moment in high school when a fire alarm went off, but since I wasn’t sure if it was a drill and I couldn’t use the elevator, I had no choice but to shelter in place. While I watched every other able-bodied student file outside to safety, I sat there contemplating the fact that there was no plan in place to evacuate me. My teacher, in an attempt to make me feel better, said, “Don’t worry. The classroom doors have a three-hour burn time.”
“I remember vividly a frightening moment in high school when a fire alarm went off, but since I wasn’t sure if it was a drill and I couldn’t use the elevator, I had no choice but to shelter in place. ... My teacher, in an attempt to make me feel better, said, 'Don’t worry. The classroom doors have a three-hour burn time.'”
And now, here we are again without a plan — except this time, it’s not a drill. As the coronavirus continues to spread, deciding who to save is no longer a hypothetical exercise in a medical ethics textbook. It’s very real in regions such as Italy, and it’s becoming increasingly likely in the United States. According to a New York Times article published Saturday, “guidance endorsed and distributed by the Washington State Health Department ... suggested that triage teams under crisis conditions should consider transferring patients out of the hospital or to palliative care if their baseline functioning was marked by ‘loss of reserves in energy, physical ability, cognition and general health.’” In one fell swoop, this terse, cold guideline could eliminate my life and the lives of so many people I love who have disabilities and chronic illnesses. Truth be told, though, this is always how it’s been for disabled people.
NPR noted that “social usefulness” is also a potential factor that might determine who lives and who dies if health care rationing becomes necessary in the U.S. Now, I completely understand the critical importance of saving those with the skills to help save others in return. But this line of thinking can quickly go beyond protecting people on the front lines and become a slippery slope leading toward judgments on the lives of disabled people.
The disability community is already constantly up against stereotypes that we are nothing more than parasites on society, despite the fact that it’s society that so often fights us every step of the way when we try to pursue access to basic things like education, employment, transportation and adequate health care. We’re stuck in a vicious cycle of being pushed to prove ourselves in a world that places every possible disadvantage before us. Here we go yet again.
Chillingly, this pandemic is bringing into sharp focus the fact that millions of disabled people on this planet have always lived in the position of being one crisis away from those with power determining their lives are not worth saving. Everything I read about medical facilities grappling with what to do if they reach capacity seems to make clear what disabled people have recognized all along: We’re all too often seen as the clutter in the way of cleaning up the world.
“Chillingly, this pandemic is bringing into sharp focus the fact that the millions of disabled people on this planet have always lived in the position of being one crisis away from those with power determining their lives are not worth saving.”
And what happens once we do finally rid the world of this particular mess? Who of the disability community will have met the fate of being remembered as someone sacrificed to save others? And for the disabled people who survive, are we simply supposed to continue on with the knowledge that next time, it might be our turn to be sacrificed? Or will society take this as a real opportunity to learn how to prepare for the future so we won’t have to ask the impossibly difficult question of who deserves to live? I have no answers. But I am afraid.
In times of crisis, it’s all too easy to throw out the notion that every life has inherent worth. Medical practitioners and ethicists are already saying that heartbreaking and devastating though it might be, triage is nothing more than the cost of doing business in an unprepared world. Abandon the few to save the many, as the logic goes. But disabled people are not the few. There are more than 1 billion disabled people around the globe. And we are not merely a statistic. We are human beings, calling on those in power to reassess the ways we value and care for others. We are calling on everyone to recognize that disabled lives are worth living.
Emily Ladau is a passionate disability rights activist, writer, speaker and digital communications consultant whose career began at the age of 10, when she appeared on several episodes of “Sesame Street” to educate children about her life with a physical disability. She is the editor-in-chief of Rooted in Rights, a platform dedicated to amplifying authentic narratives on the disability experience through an intersectional lens. And she co-hosts The Accessible Stall Podcast, a show that dives into disability issues. Her writing has been published in outlets including The New York Times, Self, Salon and Vice, and she has spoken before audiences from the U.S. Department of Education to the United Nations. More about Emily’s work can be found on her website, Words I Wheel By. Follow her on Twitter at @emily_ladau.
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