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There’s a haunting moment in the traditional liturgy for Rosh Hashanah and Yom Kippur when Jewish prayer acknowledges that all hangs in the balance. In spare, stark poetry later evoked by Leonard Cohen in the lyrics for “Who by Fire,” the words of the Unetaneh Tokef prayer-poem call listeners to grapple with mortality and mystery: “On Rosh Hashanah, it is written, on Yom Kippur, it is sealed—how many will pass away and how many will be born. Who will live and who will die?”
Like many contemporary Jews, I shy away from the notion of a God who sits in judgment. The medieval poet imagines a scene where God surveys each individual soul like a shepherd taking stock of the flock. But when I recite those words in synagogue, I’m not thinking about the hand of God, scribing the fate of every life in some vast cosmic ledger. My heart isn’t trembling before heaven. My eyes are on the earth.
I’m thinking about the cruelty we’ve built into the basic fabric of this world, the way we chose to bow before the altar of efficiency, the way we privilege profit and productivity over decency and care. I’m thinking about racism and white supremacy, about queer and trans hatred, about disability injustice, about the violence borne by so many of us whose bodies and minds are marked as undesirable. I’m thinking about way the world runs roughshod over those of us who are deemed too sick, too slow, too poor, too fat, too mad, or too much trouble to embrace.
I’m thinking about ableism.
For years now, I’ve kept my own private practice during Yom Kippur. As the congregation sings those age-old lines—who by water, who by fire—I call to mind the names of those who died before their time.
I’m thinking about Carrie Ann Lucas, a brilliant disability rights attorney and activist who died after her insurance company denied a crucial antibiotic because it was too expensive.
I’m thinking about Twilla June Morin, one of more than 200,000 Americans who died of COVID-19 in nursing homes and long-term care facilities in the first two years of the pandemic—a staggering reminder of the way structural failures intensify the brutal risks borne by elders and disabled people during this ongoing public health crisis, mirrored now by our utter abandonment as the rest of the world rushes back to normal.
I’m thinking about Eric Garner, Tanisha Anderson, and Keith Lamont Scott—each of them Black disabled people who died as a consequence of police violence, their names a haunting testament to the way that disability intensifies the risk of incarceration and death at the hands of law enforcement.
I’m thinking about Stacey Park Milbern, a beloved friend and activist who died during the first year of the COVID-19 pandemic, after complications from surgery. Milbern worked tirelessly to challenge the systems that devalue disabled people. In 2019, California’s electric utility shut off power to more than 700,000 homes and businesses—a precautionary measure designed to reduce the risk of wildfires. But despite the planned nature of the outage, PG&E failed to ensure continued power for essential facilities or for residents who use ventilators, supplemental oxygen, C-Pap machines, electric wheelchairs, and more. Milbern helped launch and lead a grassroots rapid-response network to keep disabled people alive during the blackouts.
I’m thinking about the commitment to fight hard for disabled people’s lives—about the bedrock conviction that we are all worth fighting for. Because I want us all to recommit to transforming the systems that treat disabled people with such disregard.
The rabbis of the Talmud recount the cruelty of the world’s most wicked city, a city where the men in charge force every traveler to lay down upon a single bed. They demand their hapless guests fit the bed exactly. If the man is too short, they stretch him to fit. And if he’s too tall? They cut off his feet.
While the Talmud never names it in exactly these terms, this is a story about the brutality of ableism. It’s a story about the violence that follows when we force people to fit complex bodies and minds into a one-size-fits-all society; when we demand that everyone walk up the stairs or read the fine print; when we assume everyone’s body and everyone’s mind better fit the same bed. This is the world in which we live, a world that would rather chop us up and spit us out than cherish the real, riotous diversity of all human kinds.
And it isn’t only disabled people who pay the price. Fat bodies, Black and Brown bodies, Jewish bodies, Muslim bodies, women’s bodies, queer, trans, and nonbinary bodies—so many of us know the cost that normativity exacts from those of us who don’t fit neatly into “standard” spaces and rigid expectations. The cultural logics of normalcy and deviance are weaponized against all of us whose bodies and minds don’t measure up.
Whenever we hear a disability story, we face a crucial choice. Do we assume the problem is a person’s physical or mental difference? Or do we focus our attention on the way certain bodies and minds are denied access? Ableism privatizes the problem. It tries to convince us that the mismatch is a consequence of our own personal failures to conform.
It’s time we flipped the script. Rather than trying to shoehorn disabled people into the narrow confines of the normative, we must change the world in which we live. Rather than expecting everyone’s body and mind to work the same way, we can challenge the policies and social structures that disenfranchise disabled people and make our lives more difficult. Don’t shorten the traveler’s body; build them a bed that fits.
We all have a stake in dismantling ableism. None of us have bodies or minds that will always run like clockwork, that can always keep on pushing. We’re all at risk in a world that treats our bodies as an obstacle to someone else’s bottom line.
To challenge ableism, we have to teach ourselves to notice normativity, to recognize the way it’s embedded in the very fabric of our lives. The exclusion of disabled people isn’t a natural, inevitable fact of the body. It’s a product of policy choices, of built environments, of cultural norms that have visceral, real-world impact. Human beings designed our cities and our schools, and we built them for a particular sort of people. We designed standardized tests and impossible beauty standards. We came to value efficiency as a signal mark of excellence. We designed sheltered workshops, where people with intellectual disabilities labor for pennies an hour. We developed mass incarceration, insane asylums, and the eugenics movement. We built this world—but we can build it differently.
This Yom Kippur, that’s what I’m praying for—that we build a world that welcomes us. A world that wants the very quirkiness that ableism would outlaw. A world that savors neurodiversity, that sees our singularity as a witness to infinity. A world that celebrates and cradles us. A world that desires us.
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