My father used to put me to sleep every night when I was seven years old. He would bring me a fluffy bunny puppet each night and teach me about 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, you can try it again: 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 over our heads, where space ends?
My father would leave the room and I would continue to lie awake in terror and wonder, pondering the places of non-existence. My father was a philosopher when I was born. However, my childhood was spent hiding from Nazis at 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.
I still think about death four decades later. I am a chronically sick rabbi and have spent the past 15 year providing spiritual care for people who are dying, sick, 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. Both my clients and me can finally rest at a bedside. I used to work in hospitals and nursing homes. But, a different question kept me awake at night. Who gets to live in this country and who is left to go to heaven?
This question bothered me before and after the pandemic. But, since March 2020, the inequalities of health care have been reflected in death statistics. People of color, elders, disabled people, and/or persons of color are the hardest hit. 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. This sounds like code to me as a high-risk, immunocompromised person. Already, the risk for the chronically ill, disabled, and elderly is increasing as mask mandates are lifted and quarantine periods are shortened. We’re stuck at home, often not even able to make it to necessary medical appointments, as public society becomes too dangerous for us.
My dad used to put me to sleep with a bunny puppet. He now lives in a large public nursing home that has been hard hit by COVID. Each surge has swept through his hallway taking staff and residents with them. My father was diagnosed with Parkinson’s Disease 25 years ago, when he was not much older than I am now. He has stopped speaking in 2022 and is often confused as to whether he’s 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. This is not a rare occurrence. I often hear my clients with dementia’s relatives talk about their grandparents and parents in the past tense, as if they have died. He was a physician.They say. She was a great mother.
I have been part of numerous palliative-care teams and have consulted in many end-of life ethics cases at some of the best urban hospitals in the nation. In almost all of these cases, doctors and other health care professionals assume that disability is a sign of a diminished quality life and that the more disabled someone is, the more likely they will 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. Many studies have shown that people with disabilities rate their quality of life at the same level or higher than those who are able-bodied. peopleDo not, and that our happiness level is not related to our degree of disability. This holds true for a variety of disabilities, including severe illness and catastrophic injury.
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 ALS client who lived to the end of her prognosis. Although she had limited movement in her chin, she was able to use that part of her body to write poetry while on her journey across California with her care team and ventilator. Her insurance company was very expensive because she was often in the ICU for a ventilator issue, or a UTI. Almost every time she was there, someone would ask her if it was okay to sign a Do Not Resuscitate order to limit the number of life-saving measures doctors could take in an emergency. She always said no. As her rabbi, I was sometimes asked to help her.
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 responds slowly: Every… indignity… imaginable. When I ask if he’s ready to die, he is quick to shake his head No. Throughout his long illness, he has been very clear about this, even though he is not clear about everything else. However, his response to this surprise and disbelief is still received by some of the health-care providers who care for him.
He answers clearly when I ask him about his boredom. No. He spends most of his day sitting in a comfortable chair, staring at a wall or his hands, curled in himself like a fiddlehead, in the manner of creatures at the start and end of their lives 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. As a child, he was always seeking solitude and would often lock himself in the bathroom to write academic papers alone. He now truly enjoys daily visits with his mother, chocolate milkshakes, and family time. He is finally able to take the time to contemplate the vast unknown space above his head and maybe even make friends with it.
People have become more accepting of the lives of disabled people as less worthwhile because of the pandemic. 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, andWe would not be a great loss. This early stage was completed in April 2020. medical rationingPolicies are being introduced in hospitals across the country that exclude elders and disabled people from lifesaving care. BeforeThere were also emergencies. 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. In June 2020, Michael Hickson (a 46-year old Black father with disabilities) died from COVID. Melissa, his widow recorded that Michael Hickson, a 46-year-old Black father, died from COVID in June 2020. His doctor said that it would not be possible to treat him because he would never have a good life. quality of lifeAs a disabled individual.
Lockdown protesters are now explicit about the disability of elderly 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 prefer to be kept in your own home, do it. 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 gained popularity in the early 20th century. However, it was out of fashion after the Nazi belief that a eugenically purified species 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. People with intellectual disabilities and psychiatric disorders are considered less worthy of living.
As COVID variants spread around the globe, the message about disabled people being unsalvable has been resounding in recent months. We should simply forget about COVID restrictions and accept the fact that everyone will get it. This implicitly assumes that some people will die, and that many of those who do die will be disabled. These biases were made explicit by Rochelle Walensky, Centers for Disease Control and Prevention Director, on January 8, 2022. 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. This is a human egoism. Our grandparents and parents lived full lives before we were born. Now, as they approach the end of their lives, we may become irrelevant again. People with cognitive disabilities can still be people, even if they don’t have memory or awareness. It became clear to me as soon as my child was born that someone with short-term memory and no language skills can have deep and intimate relationships. This is what most parents see when they interact with their newborn. Yet, many of our relationships with older people with dementia are difficult. It’s much easier for most of us to be present at the beginnings of memory and language than to grieve these losses. Our aversion towards loss can limit how we relate to one another.
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. We look forward with hope to a world that is less dominated. endemic COVID, as opposed to pandemic COVID, we must be honest about the fact that risk willNot all people will see the same level of subsidence. Name what you are willing and able to lose and what you must hold on to.
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 carelessness is tragically ironic. 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 real reality. Already, more than halfA majority of the country suffers from chronic illnesses, and almost all of them are elderly. one in fourAmericans are disabled. As the population age and faces more disabling conditions like long COVID and environmental illnesses, it is likely that most of the population will become sick and/or disabled within the next few years.
The majority of society doesn’t realize how much would be lost, if public spaces were made more difficult by endemic COVID. Just as the happiness level for disabled people is greatly underestimated by medical professionals, the overall able-bodied population underestimates the creativity, joy 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 life as a chronically ill person has taught me how slow down, give and take care, accept uncertainty, and love unconditionally. These skills are especially important for those who live on a chronically ill planet.
There are times when my father seems to have lost his ability to speak, and there are other times when his signature style of speaking 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, They are not well-known enough for me to comment.This could be interpreted as a sign that he is losing memory or snobbery. But if you know your father, it is simply his endurance. He uses his extraordinary brain to evaluate philosophical ideas and not personalities. This makes him both surprisingly detached and non-judgmental. Even before he was sick, if we had asked him what his thoughts were about just about anyone (even academic colleagues of over forty years), he would have replied with a similar phrase.
When I was seven, I had a pink bunny blanket (to match my pink-clad bunny puppet). It was my favorite thing in all of the world. My father would lay on the quilt’s edge, holding the bunny puppet in one hand. It’s possibleHe said it in his bunny voice one night. There is another universe, where a dad puts his youngest child to sleep with a bunny puppet. They look exactly like us. There may be many parallel universes.I lay awake for hours watching brightly glittering universes spin around me in darkness. My father is present in every world.
