Berkley Center For Religion, Peace & World Affairs
The New Normal?
A Buddhist Perspective
on Disability and COVID-19
By: Darla Schumm
April 17, 2020
In these coronavirus dazed days, I keep noticing people yearning for a return to “normal.” Social media accounts are flooded with memories of normal activities from past times; political pundits prognosticate about when the economy will return to normal; media commentators toss out hopeful predictions about when we can resume normal social activities; and friends and family members mourn the loss of some vague notion of a normal life. As disability studies scholar Lennard Davis observes, we live in a culture propelled by the “hegemony of normalcy.”
As I faithfully practice social distancing while working from my new office on the couch, interacting only with two humans (my husband and son), one dog, and one parakeet, several questions float to the surface of my mind. What was this “normal” to which we so desperately long to return? For whom was the “normal” of even just a month ago so wonderful? And, perhaps most urgently: Do we really want to go back to “normal”?
Questioning a glorified notion of normal is not new for many of us who live with disabilities. The disruptions, chaos, stresses, fears, anxieties, and uncertainties unleashed by the onset of COVID-19 are all too familiar to people with disabilities. The “new normal,” so unsettling and shocking for the majority of Americans, is, for people with disabilities, simply the old normal. We understand the stress and fear accompanying life in a body that surprises you with its inability (sudden or expected) to perform typical functions. Many of us recognize feelings of loneliness and isolation resulting from social distancing, whether it is externally imposed because of a global pandemic, or because exposure to large groups of people is potentially dangerous to our health even without a pandemic. Still more of us know all too well that the intersections of race, class, gender, and disability exacerbate the precarious nature of our economic stability. In other words, the “new normal” is not new at all; rather it is an old reality avoided, ignored, dismissed, and denied by systems and structures of power and privilege that fuel extreme poverty, inequity, and injustice. Too many of us were able to pretend that these inequities and injustices did not exist until the novel coronavirus forced us to confront the uncomfortable truth.
Even as I am acutely aware of the tragic wreckage wreaked by COVID-19, I stubbornly refuse to let the end of this story be one of complete despair. How can we unearth the hidden opportunities for learning and growth that might be lurking beneath the rubble of the coronavirus? What are the possibilities in this historical moment to imagine a new normal that is truly new? How can we map the terrain of a new normal rooted in principles of justice and equity? What are some religious teachings that can inform our creative imagining and mapping of this future new normal? In other words, how can we harness our collective energy to dismantle the current hegemony of normalcy?
The wells of religious teachings for re-molding the contours of the hegemony of normalcy run deep. It is my fervent hope that multitudes of individuals and communities are engaging in this type of life-generating justice work, even if from an appropriate social distance or via the ever-present world of Zoom. I offer some entry points into this creative imagining by drawing from the well of Buddhist teachings and from my embodied experience as a person with a disability.
Buddhism teaches that impermanence is the true nature of reality. The only constant in life is that life is constantly changing. Suffering results from our inability to grasp the true nature of an impermanent reality, or conversely, from our clinging to a desire that things remain the same. According to this worldview, it is not change that causes suffering, but our inability to accept the inevitability of change.
Buddhism further emphasizes the interdependence of all sentient beings. We dwell in an interconnected web of existence where my suffering and your suffering, or your joys and my joys, are inextricably linked. Suffering or joy do not belong to any one individual, they belong to the collective community. The medieval Indian monk Shantideva describes it this way: “I should eliminate the suffering of others because it is suffering, just like my own suffering. I should take care of others because they are sentient beings, just as I am a sentient being. When happiness is equally dear to others and me, then what is so special about me that I strive after happiness for myself alone?”
As a blind person, I am intimately acquainted with the Buddhist conceptions of impermanence and interdependence. Inhabiting a non-normative body means that in some circumstances I can count on my embodied knowledge, but in other situations I cannot. Contrary to what most able-bodied folks think, this is neither tragic nor scary; rather it is my normal. In fact, it affords me frequent and welcome opportunities to discover surprising and delightful ways of being in the world. I rarely expect constancy or stability because I understand at a cellular level that life is unpredictable and ever-changing. Likewise, blindness reminds me daily of my interconnectedness with others. There are basic life tasks I simply cannot complete without assistance. As a fiercely self-possessed woman, I have learned to graciously and humbly ask for help, and I in turn strive to return those kindnesses whenever possible.
The novel coronavirus has revealed much about the hegemony of normalcy in American culture and society. It has demonstrated the fragility of some of our most dearly held institutions. It has displayed in bold relief many of our most unjust systems and structures. It has illuminated with new and disturbing clarity the overwhelming gaps between the haves and have nots. It has shifted the very foundation of almost everything we thought we knew about the world. Yet, these seismic shifts have also cracked open possibilities for imagining and creating a new normal—a normal grounded in the beauty of impermanence and the gift of interconnectedness.
Other Editorial Responses
We Are All Responsible:
Ethics of Elder Care in COVID-19
By: Sarah Moses | May 1, 2020
When I teach my comparative religious ethics course, I have found that one of the moral insights my college students find most compelling is from Jewish thinker Abraham Heschel: “Few are guilty, but all are responsible” . Heschel applied this argument to the 1968 My Lai massacre during the Vietnam War in his insistence that all Americans were responsible for ending the conflict. But Heschel’s insight, drawn from his reading of the Hebrew prophets, could be applied to the current situation of elderly people living in long-term care facilities which are being ravaged by the COVID-19 pandemic. In a press conference regarding Canterbury Rehabilitation and Healthcare Center in Richmond, VA, site of one of the highest death tolls nationally, medical director Dr. James Wright acknowledged it would be important to assess what steps the facility could have taken to better protect its residents. However, he went on to state: “It’s also important to see what we, as a society, could do differently, because this will not be the last untreatable virus to decimate our elders. When we, as a society, see that it’s appropriate to warehouse our elders, and to put them in small spaces, to underpay their staff so that there are chronic staffing shortages — I think if we see that as an adequate treatment of our elders, then we’re going to have a bad time. We are going to see this over and over again. We all opted for this type of environment for our elders” [emphasis mine]. Heschel’s call to universal responsibility together with Dr. Wright’s insight concerning societal accountability for the conditions in which elders live suggest that the COVID-19 crisis provides us an urgent opportunity to radically reshape elder care for the future.
In the United States about 1.5 million people live in nursing homes and about 1 million in assisted living. Furthermore, with the significant growth of the 65+ population projected through 2050, there will be an increase in the number of older Americans living in congregate care settings. While the majority of older Americans live in the community, we must recognize that those living in long-term care settings face acute vulnerability in this crisis. In fact, the grim picture of COVID-19’s devastation for these elderly is now painfully clear. The World Health Organization (WHO) now estimates that up to half of coronavirus deaths in Europe were residents of long-term care facilities. Disturbing stories of neglect and death have arisen in countries like Italy, Spain, and France: For example, on March 23 in Madrid, Spain, soldiers sent to disinfect a nursing home discovered dozens of elderly residents who had been left dead in their beds, abandoned by staff who themselves were sickened or feared being infected.
Here in the United States a similar pattern is evident. The New York Times reports about one-fifth of COVID-19 deaths in the United States come from long-term care facilities, and at least 36,500 residents and employees nationally have contracted the virus. Since the first confirmed outbreak in Kirkland, Washington, deadly outbreaks have plagued nursing homes and assisted living facilities across the country, from Louisiana to Maryland to Indiana to New York. In hard-hit New York City, nursing homes account for one in four coronavirus deaths, and in one large nursing home in New Jersey, police discovered 17 bodies stacked up in a small morgue. These painful realities led one former New York state official to refer to nursing homes as “death pits.”
Watchdog groups are warning the true extent of virus infection and death is still likely undercounted as reporting from long-term care facilities has been inconsistent nationally. In fact, across the country family and friends of elderly residents have been frustrated by the inability to get accurate information about their loved ones and the conditions within the facilities where they live. While the Trump administration recently announced strengthened reporting requirements for long-term care facilities, compliance is still a challenge without enhanced surveillance and enforcement nationwide. As in Europe, long-term care administrators and elder care advocates have documented chronic staff shortages and a lack of access to testing and personal protective equipment, as these resources were allocated elsewhere. The situation is so dire that states like Maryland and Rhode Island are now bringing in National Guardsmen to shore up struggling facilities. As one nursing home executive in New York asked, “The story is not about whether there’s COVID-19 in the nursing homes. The story is, why aren’t they being treated with the same respect and the same resources that everyone else out there is?”
Even in facilities without outbreaks, the measures recommended to protect vulnerable residents increases social isolation and loneliness for a population already marginalized from their communities. Following the outbreak in Kirkland, elder care facilities across the country banned all visitors, including family members; ended congregate activities such as religious services and communal meals; and in some cases prohibited residents from leaving their rooms. While such measures may be warranted from a safety perspective, as one observer put it, more isolation is not what older people need emotionally and psychologically. In fact, a report issued in February by the National Academies of Sciences, Engineering and Medicine warned of the negative psychological and health impact related to the social isolation and loneliness experienced by many older adults. Old age in and of itself doesn’t make a person lonely or isolated; but as the report explains, the current conditions within elder care facilities create a much higher risk for this population.
Understanding the vulnerability of elderly living within long-term care facilities is not complete without recognizing the intrinsic link between the condition of careworkers and the well-being of elders. Advocates for improved elder care have long identified chronic problems with the work conditions of direct careworkers, including CNA’s in nursing homes and homecare workers: low pay, lack of benefits such as paid sick leave, inadequate training, professional disrespect, and little opportunity for professional advancement . These conditions lead to high levels of staff turnover, making it difficult to ensure a well-trained staff equipped to prevent the spread of infections. Lack of paid sick leave also results in staff coming to work sick and thus spreading illness to those under their care. Because of low wages, direct careworkers often pick up extra work in other facilities, thus increasing the likelihood of spreading a virus like COVID-19. The vulnerability of elderly living in long-term care facilities is linked to the vulnerability of careworkers caused by poor working conditions which disproportionately affect women and minorities who make up the bulk of long-term care workers.
While the pandemic’s impact on elderly people in long-term care facilities is heart-breaking, this suffering can awaken all of us to a new sense of shared moral responsibility. Drawing from the Jewish tradition, Heschel argued that moral responsibility is “the heart” of the dignity of the human person; it is “the capability of being called upon to answer” . While only some of us have a loved one in a nursing home, we all should feel a deep sense of responsibility for creating a different culture and society around care for the frail elderly. While some nursing home administrators may be found criminally negligent in violating safety requirements, all of us are responsible for the society that has tolerated the warehousing of the elderly and the exploitation of low-wage care workers.
Perhaps the first step in taking responsibility, in claiming this core aspect of our human dignity, is to acknowledge that things can be different. Already such alternative models of elder care exist. For example, the Green House Project, founded in 2001, has partnered with senior care organizations across the United States to build small family size care homes with 10–12 residents, each having a private room and easy access to an outdoor patio. The Green House also has a revolutionary vision for staff, empowering direct careworkers, lowering staff turnover, and increasing professional opportunities. With over 15 years of experience since the first Green House homes were built, research has shown this model is financially feasible and produces better outcomes for staff and residents than traditional large institutions. Experts have reported the “staggering” financial loss COVID-19 is inflicting on the long-term care industry, especially for the 70% of facilities that are for-profit. However, given the chronic, systemic problems with this industry even before the pandemic, there should be no bail out for the nursing home industry as it exists. Instead, we must all take responsibility in this moment and advocate for federal and state policy and funding to radically remake long-term elder care in a way that truly promotes the well-being and dignity of elders and careworkers.
Religious communities in particular can play an important role in taking responsibility for vulnerable elderly. Given the intergenerational make-up of religious congregations, faith communities could even have a special role in fostering and modeling friendship and solidarity between generations. One example of this is an organization with which I have worked—The Community of Sant’Egidio. Founded in 1968, this international Christian lay community has served elderly people throughout the world with a model of intergenerational friendship in which care is provided to older people at home and in institutions. In some European cities, Sant’Egidio has also founded small family homes and co-housing arrangements in which frail elderly can receive residential care in a personalized manner. In addition to providing direct care, Sant’Egidio has exercised moral responsibility for the elderly by advocating for the abolition of traditional nursing homes and reallocating resources for providing care in the home. In the context of the COVID-19 crisis, for example, the Sant’Egidio chapter in the United States published an appeal calling for concrete actions to ensure the safety of elderly people living in care facilities and efforts to overcome social isolation. And despite the need for social distancing, Sant’Egidio communities have found concrete ways to maintain solidarity with elderly friends, such as writing cards and talking to residents through outside windows. Sant’Egidio seeks to form an alliance with people of goodwill to bring about a lasting shift in societal attitudes toward the elderly.
In a moving op-ed in the Washington Post, nursing home resident Brenda Dikes shared, “The coronavirus makes [living here] so much worse. I’ve been locked in my room, and living in this place doesn’t feel safe . . . How would you feel if you were next in line to get this virus–if you were in danger–and no one would tell you anything?” Heschel’s understanding of moral responsibility suggests that our individual dignity, and the measure of our society, resides in our capacity to be called upon to answer to the voices of those like Brenda Dikes. As Heschel himself declared at the first White House Conference on Aging in 1961, “But the affection and care for the old, the incurable, the helpless are the true gold mines of a culture” . It is my hope that this tragic crisis will finally help us realize that care for and solidarity with vulnerable elderly persons is the responsibility of us all.
- Abraham Heschel, “Required: A Moral Ombundsman,” Moral Grandeur and Spiritual Audacity (New York: Farrar, Straus and Giroux, 1996), 220.
- For instance, Paul Osterman, Who Will Care for Us? Long-Term Care and the Long-Term Care Workforce (New York: Russell Sage Foundation, 2017).
- Heschel, “Required,” 220.
- Abraham Heschel, “To Grow in Wisdom,” in The Insecurity of Freedom (New York: Farrar, Straus & Giroux, 1966), 72.
Disabilities in Hiding:
How the Pandemic Might Shape Justice
for All of Us
By: Jana M. Bennett | April 16, 2020
The coronavirus story is one that both reveals and conceals. We have seen how coronavirus exposes systematic health care injustices for the poor, for example. Yet the pandemic continues to conceal the problems with another American injustice, which is the habit of assuming that most people are able-bodied. That habit, over the years, has involved several, sometimes well-intentioned, but yet troubling responses to disability. Our past responses to disability have chiefly included attempts to fix or normalize individuals, as well as attempts to fix society’s accommodations to disabilities via the Americans with Disabilities Act. We also have a very strong habit of hiding away disability as something shameful. My hope is to reveal ways that the coronavirus may instead compel us to respond to people with disabilities with much greater wholeness.
Let me first underscore the kind of broken system that already exists when it comes to disabilities. My own story, which is just a small story among scores of stories that could be told, is that I have a moderate-to-profound hearing loss. It has been “fixed” with hearing aids and 20 years of speech lessons. Society around me has been “fixed” by providing a limited supply of flashing light fire alarm systems in some buildings and a captioning telephone in my office.
A serious problem with these fixes is that they serve to hide me, to my detriment. Colleagues will often marvel: “Aw shucks, I forgot you have a hearing loss because you don’t act like it,” when I ask for words to be repeated or written down. I will miss whole conversations because someone was talking literally behind my back, where I couldn’t lip read. When it comes to the social fixes: Woe to me if I end up needing to talk on a different phone, or find myself in an older building with older smoke detectors, or in a place where no one knows that I have a hearing loss.
My hiddenness is quite mild compared to some who worry that genetic testing might eradicate them and people like them, or that whole populations of people might be belittled for seeking cultural recognition of their difference. In addition, that person apparently hogging a handicapped parking space may have an invisible disability – a heart condition or MS. Cognitive disabilities, too, often get overlooked. Many scholars of disability in recent years have emphasized the importance of broadening our categories of disability because of that hiddenness.
The pandemic threatens to hide disabilities even more. Consider, for example, questions about pandemic triage and scarcity of medical resources. People with disabilities have sometimes featured as people who, however regrettably, should be denied care, in favor of more able-bodied people. “Aw shucks. It’s terrible, but these are terrible times in which we must negotiate scarce resources.” People with disabilities are made hidden by the fact that they are shunted to the end of waiting lists. There are also the strong and healthy—the dads in their thirties—we are reminded, who are also affected by coronavirus. The bioethical question in a time of scarce resources is that maybe they are the ones who most deserve triage care.
It is tempting to believe that most Americans would be on the right side of that triage care. Yet that would be a false belief, a belief that yet again underscores the hiddenness of disability.
So much language, especially early on, about the pandemic has emphasized that it is the elderly and vulnerable who are most at risk for complications from coronavirus. The Centers for Disease Control, as well as several states, continue to emphasize that point. Our collective imagination may describe the elderly and vulnerable as rather small percentages, compared to the vast majority.
Yet consider the CDC’s list of those who are higher risk, and therefore more vulnerable. They include: Americans older than 65 (15% of the population), about 5% of whom additionally live in nursing homes; adults with underlying conditions: chronic lung disease (13.4% of adults); asthma (7% of adults); people with heart conditions (48%); immunocompromised people, including those currently in cancer treatment (14%); smokers (14%); and those who have organ transplants, or a history of corticosteroid use, or who have other immune deficiencies. Also on the list are Americans with obesity (42%), diabetes (13%), chronic kidney disease (15%), and liver disease (1.8%). While there are surely crossovers among these conditions, it is safe to say that at least half of the American adult population has been hidden in plain sight, counted as part of the very large group of vulnerable among us.
“Aw shucks, just stay at home. Wear a mask. If you go out, it’s on you.”
That kind of a statement, made about at least half the American population, fails to recognize how systematically we attempt to push disabilities away, to make disabilities something that a few “others” have, but never, ever, me. In turn, that kind of a statement permits a broad range of injustices. Such injustices include the kind of spotty attention to flashing light fire alarms and building accommodations I mentioned earlier, to frustration with people who move more slowly, think more slowly, and need more help than “most” apparently independent, able-bodied people, to the scariest point of all: that at the end of the day, a majority of us might not be counted among the “fittest” in this pandemic, or indeed in society at all.
We deserve to live in a society that affords more time, more space, more assistance to people with disabilities. If we fail to recognize disability as having a much deeper impact on society, we shall be failing ourselves as human beings. A more inclusive society might begin with simple words: with turning “them” and “you” into “us” and “me.” Then, perhaps, we shall see justice done for people with disabilities—that is, for us.
Judaism, COVID-19, and “Crip Wisdom”
By: Sarah Imhoff | April 16, 2020
This year, people who lived alone had Passover seders without the physical presence of friends and family. A profoundly social holiday, one that celebrates the movement from bondage to freedom with the telling of a communal story, looked different this year. Lonely, for some. Most churches also have empty pews, an unhappy sight for many Christians. Religious gatherings can remind us of the importance of the presence of others. Loneliness and isolation not only feel bad. They can also create or compound physical and mental health problems. There are times when all humans need other humans, physically and emotionally.
Judaism, as a tradition and a practice, particularly emphasizes this theological and social need for others. For instance, a minyan, or prayer quorum, consists of ten adults (or ten men, depending on the community), and these group prayers hold more theological weight. God gives certain blessings to the community as a whole rather than just the individual, prayers from a minyan are more effective than solo prayers, and God is more intimately present with a minyan gathered. Some prayers are only recited in the presence of a minyan. There is a rich theological tradition and language for the importance of people’s presence together with one another—so much so that this presence together also brings the divine presence.
People with disabilities are some of the most vulnerable people in this time of COVID-19, for reasons having to do with medical care and decision-making, but also for reasons having to do with social isolation. Adults with disabilities are more likely to be unmarried. They are more likely to be of lower socioeconomic classes, and thus less likely to have access to the computers and high-speed internet that have become essential for many kinds of human contact.
Others have a different problem with isolation: that they cannot be left alone, and thus risk their own health and that of their caregivers. In addition to friends and family, professional caregivers “are faced with their own agencies’ directives, heeding the pleas of public health authorities, protecting themselves and their families, and fulfilling their responsibilities to people they care for,” Andrew Pulrang writes. “At times like these, there are no easy answers.”
In addition to being a vulnerable group, however, people with disabilities can also provide insight and practical advice on the problems that are new to many non-disabled people. And so we should ask ourselves not only about how we should collectively care for the medical and social needs of people with disabilities during this time, but also how those of us who are non-disabled can people learn from people with disabilities.
The Disability Justice Culture Club, a small group of disabled Californians, has been making their own hand sanitizer as part of emergency kits they hand out to people living in homeless encampments. They point out that they already have many of the skills and knowledge that so many other U.S. Americans scrambled to learn: how different infections spread, how to wear a protective mask properly, and how to wash your hands properly. “We call it crip—crippled—wisdom,” one member told the news outlet KQED.
Want to learn good hygiene tips for cleaning your house to minimize your risk of exposure to COVID-19? Ask someone who has a compromised immune system and has been cleaning that way for years.
Want to learn how to feel more connected when you can’t leave the house? Learn from someone who lives with chronic pain or chronic illness and often spends time at home for extended periods. Rabbi Eliot Kukla writes: “Sheltering in place has somewhat broken down the isolation of illness, as the rest of the world learns the tools sick people have always had for staying connected from home.”
Want to know how to understand that underlying anxiety that always seems to be with you now? Listen to someone with an anxiety disorder. Sociologist Cate Taylor points to the ways that people with anxiety disorders can be prescient and excellent planners: “So those of us with anxiety, let’s raise our hands proudly. We have an adaptation, not a disorder. In this global emergency, we are a precious resource.”
Frustrated that your movement depends on the rules and schedules beyond your control? Wondering what to make of the disorienting way you are experiencing the passage of time? Read the wonderful Julia Watts Belser, who uses a wheelchair, on the topic.
Some of these people use Jewish tradition as they articulate their experiences and social knowledge about physical health, isolation, anxiety, or limitations. Kukla uses the seder plate as a reminder of both the presence of people with disabilities and the fact that each of us must now carefully “tend to their energy in this time of shelter.” Belser uses Jewish ideas about Shabbat to help think about how uneven the passage and qualities of time can feel.
But all of these people, whether or not they use Jewish concepts to explain their thoughts, offer insights into experiences that may be new to many non-disabled people. The COVID-19 virus and response have made clear how people with disabilities are more likely to be vulnerable, but also how they can lead the way.
Concerns for People
with Disability During COVID-19
By: Mary Jo Iozzio | April 15, 2020
The coronavirus pandemic has exposed the shortcomings of a social system that misses the mark in its care for many vulnerable people, among them the at-risk populations of the elderly, people with chronic illness, and people with disability. Human beings are social creatures by nature, dependent on many kinds of services—from health care and education, to safe harbor and friendships. Unfortunately, the vulnerability that susceptibility and social distancing poses for these at-risk people requires the attention of policymakers and a national commitment that ensures no one will be left wanting due to a lack of recognition of their needs. Among these needs are the accommodations necessary for them to access the common goods that support well-being (food, education, health care, employment, safety). Such a commitment will guard against failures of oversight about these goods concerning them.
Chief among the many reasons for the lack of critical and informed attention to people with disability in this pandemic and in other catastrophic events (remember Hurricane Katrina? See People with Disability Tell Their Stories and No One Left Behind) are the social constructions of disability. Ableism—a set of beliefs inclusive of prejudicial approaches to “the disabled” that discriminate against them, and akin to and often overlapping other “isms” like racism, sexism, heterosexism, etc.—is the principal culprit in these constructions. Embedded into the fabric of contemporary societies from our philosophical, political, and religious heritages, ableism has orchestrated exclusion of people with disability and other minoritized persons in our nation, and in general human political and economic commerce.
As the disability critique has demonstrated, more often than not, “professional” conclusions about the cause, severity, or rehabilitation of a person with this or that impairment were faulty at best and dangerous at worst, resulting in wholesale exclusion if not sequester of persons with disability and other presumed dangerous folk (of course, exceptions are found in the use of persons with disability in entertainment or those with brilliant minds, among others). What today’s ableism fails to recognize is that the world as we know it was constructed—with laws and policies or with brick and mortar—for abled access, with results that make access for people with disability prohibitive if not entirely revoked without assistance from abled others.
COVID-19 exposes an acute miscarriage of justice regarding the common goods of access to life, home, health care, nutrition, education, friendship, and employment in meeting accommodations for people with disability that include protections from the risks of infection as a matter of course as well as the full gamut of resources to treatment once diagnosis is confirmed. Rationing on account of disability is blatantly discriminatory. Preemptively, The Partnership for Inclusive Disaster Strategies, National Council on Independent Living, and the World Institute on Disability along with 150 other organizations working with and on behalf of people with disability present an urgent “National Call to Action” for immediate strategies and solutions from the federal government and governments at every level to address specific needs of persons with disabilities throughout the COVID-19 outbreak and all public health emergencies. In a March 9, 2020 letter introducing the call to Vice President Mike Pence, the appointed leader of the Trump administration’s COVID-19 control, the signatories state in no uncertain terms that “we have seen nothing in the administration’s strategy indicating that continuity of services for people with disabilities is being addressed.”
Such continuity of services was recognized as a critical need by the Centers for Disease Control and Prevention (CDC) in 2018 in their Public Health Emergency Preparedness (PHEP) Cooperative Agreement. The 2008 National Response Framework, replacing previous plans, provides a blueprint for how the nation “conducts all-hazards response. … to save lives, protect property and the environment, and meet basic human needs. … The National Response Framework is always in effect, and elements can be implemented at any level at anytime.” Included among the eight scenarios that the framework identifies is, presciently, “pandemic influenza.” Today’s critical state of vulnerability to the coronavirus remains defiant in the face of failures apropos the nation’s own forethought in meeting the preparedness imperative and to develop effective response capabilities for people with disability and vulnerable others through a national infrastructure that was and remains designed, nevertheless, for the nondisabled.
The Centers for Disease Control offers what at face value appears sufficient for “others at risk.” They identify people with disability who may be at increased risk of infection: people with limited mobility or those who cannot practice social distancing on account of necessary support personnel and personal/family care givers, and people with intellectual or developmental disabilities, among others.
The challenge I submit to the CDC is the insufficiency of directions as to how persons with disability will “protect themselves” when they may be dependent on the kindness and coronavirus-free status of strangers. The Administration for Community Living has developed a guidance resource that, while including the CDC basics, goes further in response to the needs of people with disability with links to information offered by their network partners. The University of Cincinnati Center for Excellence in Developmental Disabilities takes two additional steps, one promoting dignity in healthcare for people with disability to “Know Your Rights” and the other directed toward healthcare professionals and other service providers to “Safeguard Against Disability Discrimination During COVID-19.”
What can our religious traditions offer in help of understanding a neglect of the all-too-frequent invisibility of vulnerable populations?
Though change beckons slowly and similar to recognition of the scourge of racism and sexism, ableism persists in an as yet decidedly ableist hermeneutic. However, like women and people of color, people with disability are “people first” and, as people, they too are created in the image and likeness of God. While in past generations the divine image was, theologically speaking, limited to the male gender and limited further to men with power, thankfully, in today’s theological discourse, a more comprehensive and inclusive image prevails.
Moreover, as Nancy Eiesland has instructed, Jesus of Nazareth the Risen Christ of Faith whom we celebrate this week in more palpable ways than at any other time in the liturgical year is the Disabled God. The Disabled God convinces many of God’s total incarnation: complete solidarity with those who are socially and materially poor, marginalized, oppressed, and distanced on account of their disability. Except for the infancy narratives (Matthew 1:1–17; Luke 2:1–7) where the poverty of his birth and refugee flight from danger are treasured, the material impoverishment of Jesus’ whole life story is an often-missed but critical part of the revelation that Jesus is the Incarnate Word of God.
The pandemic may yet inspire the Christian community to exercise solidarity in ever more concrete ways with one another and especially with those who are in most need of mercy, the willingness even to touch another’s wounds in novel ways of social distancing. For what we fail to do for others—that is, the failure to notice and then to make a way through the barriers constructed by the strong and powerful—we will have failed to do for Christ.
Disability and the Politics of Vulnerability
By: Julia Watts Belser | April 15, 2020
Pandemic has brought religious communities to the front lines of crisis care. Clergy and chaplains are offering spiritual support to the ill and the dying; to their loved ones; and to health care providers who are working to save lives amidst tremendous risk, many of whom are now the sole witness to their patients’ final words and last wishes. Congregations are responding to immense need, maintaining food pantries, organizing grocery delivery, and maintaining virtual spiritual community amidst lost jobs and bitter choices, amidst hunger, grief, and fear.
Religious voices are also raising urgent calls for a revolution in our civic values and public commitments: for debt relief and living wages, for rent forgiveness and universal health care, for the release of prisoners, for immigration justice. This is crucial testimony, and it underscores the disproportionate vulnerability that certain bodies face.
COVID-19 hits hardest among communities that are already marginalized: disabled people, people of color, queer and trans people, fat people, and others whose bodies are maligned and disdained; people who live in poverty, people who rely on public transit, people who live on the streets, people who are incarcerated or institutionalized, people at risk of deportation, and people who work essential, low-wage jobs.
As a scholar of religion and disability studies, as a rabbi and a disability activist, I am often asked: How can religious communities better support disabled people in pandemic times? How can religious allies address not only the immediate needs of people in crisis, but also act in long-term solidarity with disabled people and other marginalized communities?
Recognize the root causes of disabled people’s vulnerability.
In the early days of COVID-19, we were told again and again that it was elders and those with “underlying health conditions” who were most at risk of serious complications from the virus. That message chilled me. Not just because I fit that category, but because I know that vulnerability talk is a dangerous business.
Let’s leave aside for a moment the way the “vulnerable populations” message slowed our response to the virus, keeping young and healthy folks from taking the threat seriously. Let’s leave aside the way that message bought reassurance to the nondisabled world by positioning other bodies as expendable. Don’t worry, it said. It’s only the older ones and weaker ones who’re going to die.
Here’s the other problem with vulnerability:
Focusing our attention on the vulnerability of the body makes disabled people’s deaths seem inevitable. It obscures the social and political dimensions of risk. It lets us off the hook for the way we’ve built a world that makes certain people less likely to survive.
For people with disabilities, the social risks of COVID-19 are stark. Many of us rely on care workers and personal attendants who work for low wages and few benefits, whose social safety nets are thin or non-existent. Many of us live in poverty, making it harder to stock the fridge and prepare for quarantine. Many of us live in institutions or group homes, where residents have few choices and no good options; where staff have even less access to personal protective equipment than hospitals; where lockdowns have further eroded already shoddy systems of accountability, leaving people even more vulnerable to violence, neglect, and abuse.
These aren’t body problems. This is ableism in action, working hand in glove with capitalism and white supremacy.
Name the violence and marginalization that disability communities face.
When religious voices engage with disability, they often affirm love and welcome. This kind of declaration matters, especially in a world that disparages disabled people and treats us with disdain. All too often, though, that doctrine of love is left to stand alone. Proclaiming the infinite value of each and every individual as an image of God is a powerful theological principle. But it’s cheap talk, unless it’s coupled with a deeper commitment to reckon with the concrete ways disabled people’s lives are harmed by ableism, racism, poverty, and structural violence.
Confront the politics of triage and medical rationing.
Disabled bodies, black and brown bodies, immigrant bodies, fat bodies, old bodies, queer and trans bodies have long borne the brunt of this brutality. We live—so many of us—with the visceral knowledge that our lives are valued less. But pandemic lays it plain. As physicians and health care workers on the front lines of crisis face wrenching decisions about how to allocate scare resources, disability communities are terrified.
Yes, if I get sick, I’m afraid my lungs might fail. But I’m even more afraid of this: that someone will use my wheelchair or my disability diagnosis as a reason to move me to the back of the line. That if we’re running out of ventilators, I won’t get a chance because they’ve already decided I’m less likely to survive.
One of the most powerful acts of solidarity religious communities can offer in these times is to help channel money and resources to mutual aid networks led by disabled people of color. Consider two examples: The Disability Justice Culture Club, based in Oakland, California, pairs higher risk people with volunteers who help meet their day-to-day needs; they’re also making and distributing protective kits for disability communities, elders, and unhoused neighbors in tent encampments. Or the Autistic People of Color Fund, which provides critical mutual aid and empowerment through individual micro-grants. The fund is currently overwhelmed with need.
Both organizations—and similar initiatives around the country and around the world—are powerful sites for grassroots action. Want to support disability communities in these days? Tithe resources. Redistribute wealth. Follow the lead of those most affected.
Compassion in the Face
of the COVID-19 Pandemic:
A Christian Perspective
By: Domenic Marbaniang | April 13, 2020
Karuna (meaning “compassion”) is a key virtue in Karmic religions. It is also a key virtue in all Abrahamic religions (reham in Hebrew, rahmah in Arabic). Indubitably, karuna/reham is the common ethical call that beckons various religions together in their fight against the current pandemic.
The New Testament calls Christians to participate in caring for the vulnerable through individual and corporate endeavors. While the Good Samaritan is an epitome of individual compassionate action, we also see Christ’s compassionate mission involving a corporate effort when he calls his disciples to feed a huge crowd in an isolated situation (Matthew 14:14–15). Of course, the call underscores the doctrine that serving the vulnerable means joining hands with the all-compassionate God. In all respects, serving the multitude in a dependent and isolated situation was an act initiated by God himself.
We may observe the following structure of service in the New Testament:
- Individual ethical obligation towards family members (1 Timothy 5:4–8);
- Individual and corporate ethical obligation towards community members (1 Timothy 5:3–11; Galatians 2:10); and
- Social ethical obligation towards fellow humans calling for both individual and corporate efforts (James 1:26; 2:15).
Karuna/reham calls one to go the extra mile, beyond mere “ethical obligation.” As the COVID-19 pandemic drives many into isolated situations, the sound of the call also grows stronger; for evidently humans do not suffer alone, but in all their suffering God also suffers (Isaiah 63:9) bearing them along. Our responses to the suffering ones within our reach are our responses to Christ (Matthew 25:31–46), as Christ says, “Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.” Karuna/reham functions as the true motivator of genuine service and assistance.
Karuna towards Vulnerable Ones in the Family
Paul instructs Timothy in 1 Timothy 5 that the primary caretakers of vulnerable ones (specifically here, the elderly and by implication anyone with vulnerabilities) ought to be their own immediate family members. In fact, “And whoever does not provide for relatives, and especially for family members, has denied the faith and is worse than an unbeliever” (1 Timothy 5:8). While physical assistance is an important aspect of caregiving, providing a strong sense of belongingness and care (in word and deed) is also crucial, especially when we find ourselves in a state of isolation. A great example of this is the deep care that Christ showed towards his mother when he was in a dejected and helpless state on the cross. The COVID-19 pandemic reminds us the importance of karuna/reham towards our own family. The virtue of karuna gets often doused by utilitarian and selfish materialistic pursuits that instrumentalize other humans, objectifying them, and thus dehumanizing them. At such times, the Golden Rule speaks louder: “In everything do to others as you would have them do to you” (Matthew 7:12).
Karuna towards Vulnerable Ones in the Community
1 Timothy 5 talks about the obligation of the church to help the totally helpless within the Christian community. The church is obligated towards its own and must go beyond mere obligation in its ministry of compassion. In response to the pandemic situation, churches throughout the world observe physical distancing and meet or reach out chiefly online. At the same time, there is an increasing synergistic move to reach out to and assist members of the Christian community both at the local level and at areas hard hit by the pandemic. Individuals and churches have responded to calls by national and international organizations (Open Doors and Samaritan’s Purse, for example) that are providing assistance to the needy. COVID-19 reminds churches of their ethical obligation towards the vulnerable within the community with the expectation that an understanding of this call will motivate each church to organize its own community outreach efforts during the present crisis.
Karuna towards Vulnerable Fellow Humans
Though it does seem that the biblical structure of caretaking is based on the priority order of kinship (we are called to care first for our own family members), there are clear instructions regarding compassion towards fellow humans as well. The greatest example of this is the Good Samaritan (Luke 10:25–27). The Samaritan, though an outcast who could not call the Jewish man “his own” was willing to do to him what “his own” (the Levite and the priest) were not willing to do. This karuna towards a fellow human constituted the fulfillment of the second Great Commandment, to love one’s neighbor as oneself. While the Bible does call one to contribute to the needs of the saints, it also calls one to show kindness to strangers (philoxenia in Romans 12:13 and Hebrews 13:2). Several Christian organizations have gone frontline in caring for people most vulnerable to COVID-19 (Salvation Army, for example).
The model presented in this post holds both individuals and communities ethically obligated to assist the most vulnerable in the present crisis. But, family caregivers (the primary ones in the model) need to be well-informed. The John A. Harford Foundation provides a list of resources for the same. Churches can function as resource centers. This is also an important time to come together on an inter-denominational, interfaith platform and also in partnership with non-ecclesiastical organizations to proactively fulfill the Great Commandment. Physical distancing should not mean social isolation. There are various ways in which communication, fellowship, and communion are possible, eliminating the risks of absolute social distancing. The call, certainly, is more urgently for genuine compassionate care for each other.
In the Time of COVID-19, Ventilators Are Scarce.
How Do We Decide Who Gets Them?
By: Rebecca J. Epstein-Levi | April 13, 2020
How much your life is worth?
In an emergency, is your life worth saving? Or are you already too broken?
These sorts of questions are bioethicists’ bread and butter, and they are about to become increasingly acute as the wave of the COVID-19 pandemic breaks in full force across the United States, and we face the kinds of crises, such as ventilator shortages, that have contributed to killing thousands in Italy.
I’m an expert on social ethics and health risks, so let me be clear: The ways our social and medical systems currently pose these questions have immediate and deadly consequences. This is especially true for disabled people, whose lives are often deprioritized even more than usual when life-sustaining resources become scarce. We’re trained to see disabled and elderly people as acceptable casualties of disasters so that we can accept the use of scarce resources to ensure the survival of the young, the abled, and the healthy. We make these judgments even in non-crisis situations — consider, for example, the “Quality-Adjusted Life Year” (QALY), which assigns a monetary value to a year of life and deducts value for illness or disability and is widely used to determine the allocation of medical funding. The COVID-19 pandemic will only exacerbate matters.
What I’ve said isn’t speculation. Recent ventilator allocation guidelines from the University of Washington medical system define the “greatest good” as “maximizing…healthy, long-term survival…weighting the survival of young otherwise healthy patients more heavily than that of older, chronically debilitated patients.” These guidelines have explicitly and unambiguously judged the lives of young, able-bodied people to be worth more and to contribute more to the “greatest good” than those of disabled, ill, and elderly people.
Nor is this stance on ventilator allocation new to the time of COVID-19. As Ari Ne’eman has pointed out, these sorts of ventilator allocation guidelines have existed for years: New York State’s 2015 guidelines, for example, permitted withdrawing ventilators from chronic users if the users were admitted to a hospital during a ventilator shortage.
But think about the ethics of such guidelines: Most of us would be, rightly, appalled if we killed people to give their internal organs to others. Why does it become less appalling to take away the life-sustaining breathing apparatus of a living person just because it’s outside their body?
Here’s the thing: Lives are valuable, period. They’re valuable in and of themselves. If we become accustomed to the idea that some people’s deaths are “acceptable losses,” then we lose our ability to see a world in which no preventable deaths are acceptable.
The question we seem to be asking now is “who must die so that others may live?” But that’s the wrong question. We should instead be asking, “What kind of resources do we need so that we aren’t tempted to value some lives above others?”
Resisting the temptation to valuate lives according to perceived utility isn’t easy. The world we live in has conditioned us to do this in myriad ways, and ingrained habits are persistent. As I write, I’m constantly tempted to offer utilitarian rationales for the value of disabled lives — to point out, for instance, that disabled people and communities often have critical knowledge for surviving all sorts of disasters, something that Congresswoman Ayanna Pressley recognized recently on her Twitter feed.
But these arguments actually undermine my point: People’s lives matter regardless of what they do or do not produce, regardless of how useful they may or may not seem to be in any given moment.
Disabled lives are no less valuable than any others. Disabled people deserve access to medical resources, scarce ones included. To affirm anything less is to countenance a system in which ranking the value of human lives is acceptable. Societies with such systems have always turned out badly.
To be sure, affirming my point won’t in and of itself solve the very real shortages of ventilators and other lifesaving treatments. There are not enough of them during this pandemic. The U.S. government has failed to prepare for what it knew was coming, and so when the wave breaks, we will not be poised to stay afloat. People have died. More people will.
We must not, however, become resigned to deaths that should have been avoided. We must instead generate the collective will necessary to build a world in which it is actually possible to prevent these deaths. Every triage decision must point towards a duty to do better in preparation for the next pandemic.
We must stop treating this scarcity of resources as an unalterable given. We must instead demand that our federal and state governments order the manufacturers of ventilators and protective equipment to massively increase production. Demand they relax restrictions on imported medical equipment. Demand that we train more medical personnel in the proper operation of this equipment as quickly as possible, and incentivize the training of many more physicians, nurses, and aides against future need. Demand that medical personnel and caregivers receive hazard pay.
Demand that our government, instead of bloviating about the “10/10” response the president believes he has mounted, immediately offer the kind of massive economic support necessary to radically expand our diagnostic capacity and enable as many people as possible to practice the kind of genuine social distancing that we know saves lives.
In my work on ethics, I draw on classical Jewish sources. In Jewish law, there is a concept called pikuach nefesh (saving an endangered life) which not only allows but requires one to break any other laws if doing so will save a life. Any laws, that is, save for three: those against murder, adultery, and idolatry.
Why idolatry? One way to understand idolatry is as the act of treating anything other than the image of God as though it were God’s image — or, conversely, treating the image of God as though it were anything else. And a human, so scripture teaches, is the image of God.
In other words — you must not value profits, or reputation, or protocol, or some abstract idea of the “greatest good” above any living image of God. And no expression of the image of God is more or less worthy than any other.
Triage protocols created by artificial scarcities sacrifice disabled lives because doing so supposedly saves the lives of others. But these protocols — and those lawmakers who put them in place — are accepting that they must ultimately choose between two lives. They are wrong. Rather, the choice is between our current system that forces us to classify some lives as more valuable than others, and a revolutionary system that would make it materially possible to treat all lives as equally in the image of God.
To truly affirm the inherent value of a person, to understand that person as being in the image of God, entails an obligation to build a society in which no one person, and no class of persons, is an acceptable loss. It means treating artificially imposed scarcity as the murderous idolatry that it is.
It means saying that no person, no body, is too “broken” to be worth saving.
Editor’s note: This post was originally published by Disability Acts on March 26, 2020.
the COVID-19 Outbreak
By: Jeff Levin | April 13, 2020
By now we all know that the world is in the midst of a global outbreak of an acute respiratory disease caused by the SARS-CoV-2 virus. Most of us believe we have a bare-bones sense of the outbreak’s parameters, although no thanks to the deluge of misinformation circulating on the internet, in social media, and even among mainstream news sources. What is not widely understood, even by so-called experts making daily pronouncements and projections, are the nuances of infectious disease transmission. While exposure is widespread, only a subset of exposed people will become infected; only a subset of those will become pathogenic cases, that is develop signs and symptoms of the disease named COVID-19; and only a subset of those cases will be virulent enough to require medical care. Most will recover. A much smaller percentage, primarily the elderly or those with other chronic or acute diseases, have a substantially higher case-fatality, but still only a minority of those are at risk of severe illness or death.
A troubling development in the face of such uncertainty, not unique to the current outbreak, is that the lacuna of accurate information has bred fear and loathing and even violence directed toward those presumed to have harmed the aggrieved. So often, when we consider the history of infectious disease outbreaks, the truly aggrieved are the innocent victims of such attacks, and typically they are religious minorities. The most famous example is the widespread genocide unleashed against Jews in almost every country in Europe during the plague pandemic of the fourteenth century. Other outbreaks, epidemics, and pandemics of infectious disease have led to violent episodes targeting respective religious, racial, and ethnic minorities, for no reason other than a deep-seated need to strike out at anything and anyone misperceived to be the cause of the crisis.
These are bleak chapters in the history of religion. But this is a predictable response to the desperate feeling that such unpredictable events prove that God has forsaken us, lifted his veil of protection over us, and abandoned us to the forces of the natural world. Rather than face the public health challenge rationally in an effort to find a solution, many folks seek to lash out and demonize the Other. In the present crisis, the Other is primarily the Asian-American community. In previous social and political crises in the United States, it was Muslims, and before that Mexican immigrants or gays or African Americans or Roman Catholics. Today, this din is fed by innumerable unsourced news stories, clickbait websites, conspiracy blogs, pseudo-experts speaking with undeserved authority, and government officials seeking to make political hay. The Chinese government may be complicit in some disastrously misguided decision-making, especially early on, but it goes without saying that this in no way speaks to any complicity on the part of people of Asian origin. This kind of response may be expected in a way, given human nature, but it is never acceptable.
Examples of hatred, persecution, and violence during the current outbreak abound throughout the world. Stupidity, as well, which perusal of the nightly news reveals to be a steady constant: for example, bars staying open in defiance of stay-at-home orders which they deem “unconstitutional,” or churches staying open so as not to “give Satan the victory.” But such foolishness, too, is not unique to the present situation. It is reminiscent of instances, right after 9/11, when Sikh Americans were attacked in the street for being Muslims. Some people are so stupid that they cannot even get their bigotry right. Sadly, so much of the ignorance and aggression regarding the current outbreak and about the control of infectious diseases in general—think the antivaxx movement—originates in the pulpit, in the noxious messages put out by pastors seeking to inflame their respective congregations, or perhaps for some messianic glory.
But it does not have to be this way. There is another way that faith-based institutions and people of faith can respond. Religion and religions can be sources of ennoblement and other-regard, calling us to treat all beings with dignity and respect and respond to their needs and their suffering. In a recent interview, I noted that the present public health challenge is “a social-justice teaching moment for us as a society,” perhaps one we’ll look back on later with some gratitude. The great faith traditions all implore their believers to prioritize care for those in dire need above one’s own immediate concerns, as a matter of moral righteousness and civic duty, as in the verse in Deuteronomy (16:20) that instructs us with the words, “Justice, justice shall you pursue.”
There are people in our midst—coworkers, neighbors, friends, members of our congregations and communities—who need our help but may be too paralyzed with fear or confusion to ask for help. The most vulnerable among them may be older, living alone, out of work, and at risk of running out of financial resources. They may also be anxious or depressed, which by itself can have downstream effects on one’s immune response. It is up to each of us to seek them out and assure them of our continued presence. We can do this through offering tangible assistance, and also through providing emotional support, (virtual) fellowship, and prayer. We need to do all of the above.
When the postmortems are written, will this outbreak be viewed as a case study in religious hatred, persecution, violence, and general stupidity, or as an exemplar of faith-based cooperation and communal solidarity? I suspect there will be plenty of evidence for both positions, but in the meantime we can all pray that the latter prevails.
Source: Berkley Forum
Concerns for People with Disability During COVID-19
By: Mary Jo Iozzio | April 15, 2020
Responding to: Religion and the COVID-19 Pandemic: