May 18, 2022

myhomefranchise

Making living better

Disability Doesn’t Make Us Less Worthy of Life. COVID Policy Assumes It Does.

11 min read

When I was 7 years old, my father put me to bed each night with a fluffy bunny puppet and a lesson on human finitude. With the bunny’s glassy blue eyes fixed on me, his voice pitched high and cartoonish, my dad would ask me big questions. What if you’re the only person in the world, and we’re all just figments of your imagination? How would you ever really know that’s not true? That’s called solipsism. Or, another time: We fear the time after we die, but why don’t we fear the vast time of non-existence before we were born? Or the room above our heads, where we finish in space?

Long after my father left the room, I would lie awake in both terror and wonder, contemplating the places of my non-existence. Although my father was a professor of philosophy when I was born, his own early childhood had been spent hiding from Nazis in various Christian foster homes and orphanages in Belgium. It wasn’t just that he didn’t believe in sheltering children from hard truths (which he didn’t); a soft landing in life had never even crossed his mind.

Four decades later, I still spend much of my time thinking about death. I am a chronically ill rabbi who has spent the past 15 years offering spiritual care to people who are ill, dying or bereaved. But fears of mortality don’t keep me awake at night anymore; in fact, as a chronically ill person, it’s a relief for me to hang out with dying people. With the dying, I don’t have to explain that bodies can’t always be fixed. At a bedside, both my clients and I can finally rest. Until recently, I worked in institutional settings like hospitals and nursing homes, and a different question has kept me up at night: Who gets to live, and who is left to die in this country?

Even before the pandemic, this question bothered me, but since March 2020 the inequities in health care have been written starkly in death statistics (with disabled people, elders, and/or people of color being hit the hardest). White House Chief Medical Officer Anthony Fauci said last month that the “full-blown pandemic” is nearly over, and we will be transitioning to a phase when individuals will make their “own decisions” about risk. As a high-risk immunocompromised person, that sounds to me like code for no longer trying to protect high-risk lives. Already, as mask mandates lift and quarantine times are shortened, the chronically sick, disabled and elderly bear increased risk. We’re stuck at home, often not even able to make it to necessary medical appointments, as public society becomes too dangerous for us.

Rabbi Elliot Kukla, a white non-binary person, stands in front of a green background holding a wooden cane.
Rabbi Elliot Kukla, a white nonbinary person, stands in front of a green background holding a wooden cane.

My dad, who once put me to bed with a bunny puppet, now lives in a large, public nursing home that has been hit hard by COVID. Each surge has whipped through his hallway, taking residents and staff with it. My father was diagnosed with Parkinson’s Disease 25 years ago, when he was not much older than I am now. In 2022, he rarely speaks, and he is often confused about whether he is dreaming or awake. As it is for many elders with cognitive disabilities, people often talk about my dad in the past tense, as if he’s already dead. He is not alone in this; I hear relatives of my clients with dementia talk about their parents and grandparents in the past tense all the time, as if by becoming disabled they are as good as dead. He was a doctor, they say. She was a great mother.

I have served on numerous palliative care teams, and have consulted on many end-of-life ethics cases in some of the most progressive urban hospitals in the country. In almost every one of those cases, I hear physicians and other health care providers uncritically assume that disability is a clear indication of a diminished quality of life, and that the more disabled a patient is, the more likely they are to want to die.

These assumptions translate into high-stakes care decisions, particularly when a patient’s disabilities impair their capacity to speak or communicate their wishes. But numerous studies show that disabled people consistently rate our own quality of life as the same or even better than able-bodied people do, and that our happiness level does not correlate with our degree of disability. This finding holds true across a wide variety of disabilities, including catastrophic injury and illness.

At the same time, a recent study found that 82 percent of physicians assumed that disabled people see ourselves as either a “little” or “a lot worse off” than our able-bodied peers. This profound misunderstanding of the subjective experience of disability — coupled with unwillingness to listen to disabled activists trying to signal-boost the message that our lives don’t suck — is particularly pernicious in life-threatening situations.

I once had a client with ALS who lived for decades beyond her prognosis. She had movement only in her chin, but she used that chin to write poetry while traveling across California with her ventilator and care team. She was also extremely expensive for her insurance company: Every month or two, she would end up in the ICU for a ventilator issue or a UTI, and pretty much every time she was there, someone on staff would ask her if she wanted to sign a Do Not Resuscitate order to limit how many life-saving actions doctors would take in an emergency. Every single time, she said no. As her rabbi, I was sometimes asked by someone on her hospital care team to try to talk her into it, as if it was a spiritual flaw that she wanted to live as long as possible, given how disabled she was.

Though my client with ALS was deeply inspiring, disabled people shouldn’t have to be “heroic” or “inspiring” to deserve to live.

My father’s flawed and captivating personality has remained surprisingly consistent throughout his long illness: He was always a brilliant, hilarious, emotionally distant person, with moments of a terrifying, violent temper, and all of that is essentially unchanged. On a rare day when he is speaking, I ask him what it’s been like as an intensely private person, to live in an institution, in a shared room, depending on overworked staff for feeding and toileting. He answers slowly: Every… indignity… imaginable. When I ask if he’s ready to die, he is quick to shake his head no. He has been clear about this throughout his long illness, even when he is clear about almost nothing else, and yet his response is still met with surprise and disbelief by some of the health care providers who care for him.

Even when I ask him if he gets bored, he answers clearly: No. He spends most of his time now sitting in a chair, gazing peacefully at a wall or his own hands, curled into himself like a fiddlehead fern, in the way of creatures at the beginning and end of their life cycles. He used to be a fiercely ambitious academic of the “publish or perish” variety, as well as a world traveler, an esoteric spiritual seeker, an activist and a psychedelic journeyer. When I was a child, he was constantly in pursuit of solitude, often locking himself in the bathroom for hours to write academic papers in peace. Now, he genuinely enjoys daily visits with my mother, and chocolate milkshakes. He finally has the time to fully contemplate the unknowable space over his head, and perhaps begin to make friends with it.

In the pandemic, more and more people have come to see disabled lives as inherently less worth living. From the earliest days of March 2020, the public health message was that “you” didn’t need to panic about COVID; only elders and disabled people would die. Implicit in this message were the twin unquestioned assumptions that disabled people weren’t the ones reading the news, and that we would be no great loss. This early stage gave way in April 2020 to medical rationing policies popping up in hospitals across the country, excluding disabled people and elders from lifesaving care, even before there were emergency shortages. Disability advocacy groups fought in the courts to overturn these largely illegal policies, but laws can’t legislate the ableist thinking of individual medical providers. For example, in June 2020, Michael Hickson, a 46-year-old disabled Black father, died of COVID. His widow, Melissa, recorded his doctor saying that treating him would be futile because he would never have a good quality of life as a disabled person anyway.

Meanwhile, lockdown protesters have been explicit about the disposability of elders and disabled people. On May 6, 2020, conservative stay-at-home mom Bethany Mandel tweeted: “You can call me a grandma killer. I’m not sacrificing my home, food on the table, all of our docs and dentists, every form of pleasure (museums, zoos, restaurants), all my kids’ teachers in order to make other people comfortable. If you want to stay locked down, do. I’m not.” Thousands of people cheerfully thumbs-upped this statement and retweeted it.

When disabled and elder deaths are treated so flippantly, it begins to sound a lot like eugenics (the view that only some kinds of people are “fit” to thrive and reproduce; in other words, only some people are people). Eugenics rose in popularity at the beginning of the 20th century, and went out of fashion because the Nazi belief in a eugenically purified race led to the Holocaust. Ableism has always been at the heart of eugenics; Hitler called disabled people “useless eaters,” and he murdered us first. In the ableist eugenic mind, inferior races are “unwell.” In this worldview, Black and Indigenous people are seen as inherently less intelligent, while queer, transgender and nonbinary people are labelled as mentally ill and perverted. Meanwhile, people with intellectual disabilities and psychiatric disabilities are seen as inherently less worthy of living.

In recent months, as COVID variants sweep the globe, the message that disabled people are unworthy of salvage has once again become mainstream. The view that we should just get over COVID restrictions and accept that everyone will get the virus tacitly assumes that some of us will die, and that these deaths will overwhelmingly be disabled people. On January 8, 2022, Centers for Disease Control and Prevention Director Rochelle Walensky made these biases explicit during an interview about the Omicron variant on “Good Morning America” when she said that she was “really encouraged” that only “unwell” people were dying of Omicron.

When aging brings cognitive disabilities, my clients’ family members often say, “I feel like my person died already,” when what they mean is that it’s intensely painful for us to sit with dementia and their loved one’s loss of memory. There is a very human egoism in this. Our parents and grandparents had full lives without memory of us before we were born; now, as they come to the end of life, we may again become irrelevant. People with cognitive disabilities are still people, even without memory or awareness of us. When my child was born, it became vibrantly clear to me that profound intimate relationships can exist with someone who lacks long-term memory and language. This is obvious to most new parents interacting with newborns, and yet many of us struggle to relate with genuine intimacy to elders with dementia. It’s much easier for most of us to be present at the beginnings of memory and language than to grieve these losses. So much of how we relate to each other is limited by our aversion to loss.

As a country, we have not even begun to grieve the losses of the last few years; we have lost so much, and we don’t know yet what will be restored. As we look with hope toward a world a little less dominated by endemic COVID, as opposed to pandemic COVID, we must be honest about the fact that risk will not subside at the same rate for everyone, and name what we are willing to lose and what we need to hold on to fiercely.

I fear that we’re moving toward a reality where it’s increasingly risky for many elders, sick and disabled people to leave their homes, with the able-bodied creating a strange new kind of public society without us, while online access to public spaces like college campuses and religious services wanes. This is tragically ironic in its carelessness. Disability justice activist and writer, Alice Wong, coined the phrase the “future is disabled” and the disabled author, Leah Lakshmi Piepenza-Samarsinha, has a book forthcoming by that title. This phrase speaks to a very tangible reality. Already, more than half of this country has a chronic illness, and almost one in four Americans is disabled. As the population ages and we face more disabling conditions, like long COVID and environmental illness, it seems likely that the majority of the population will be sick and/or disabled in the near future.

The mainstream world does not yet grasp just how much would be lost if public spaces became even less accessible due to endemic COVID. Just as (largely) able-bodied medical authorities vastly underestimate the happiness level of disabled individuals, able-bodied society, as a whole, underestimates the creativity, joy, innovation and connectivity of disabled culture. On a warming planet, as life gets more tenuous, disabled communities have some of the knowledge, experience and innovations needed for everyone’s future. My chronically ill life has taught me how to slow down, give and receive care, sit with uncertainty and love unconditionally. These skills are particularly valuable for life on this chronically ill planet.

There are times when it seems like my father will never speak again, and then there are moments when his trademark speaking style is clear and sharp. I ask him what he thinks of the certified nurses’ assistants who literally wipe his ass for him, and he says slowly, I am not familiar enough with them to comment. Some might hear this as a sign of memory loss or snobbery, but if you know my father, this is merely the endurance of his personality. He uses his exceptional brain to evaluate philosophical ideas, not personalities. This makes him both painfully aloof and surprisingly non-judgmental. Even before he got sick, had we asked him what he thought about just about anyone (including academic colleagues of over 40 years), he would have answered with a similar turn of phrase.

When I was 7, I had a pink bunny quilt (to match my pink-clad bunny puppet), which was my favorite thing in the world. My father would sit on the edge of it, with the bunny puppet on his hand. It’s possible, he said one night in his bunny voice, that there is another universe somewhere, where there is another dad putting his youngest child to bed with a bunny puppet, and they look just like us. Perhaps there are dozens, hundreds, thousands of parallel universes. Afterward, I lay awake for hours, bright glittering universes spinning around me in the dark. In each and every possible world, my father is there.

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