MAY 16, 2020
“DISEASE METAPHORS ARE NEVER innocent,” writes Susan Sontag in Illness as Metaphor, a warning especially relevant as we consider how to cope with a global pandemic — one that has been frequently weaponized, through metaphor, by the American president. Though Lynn Casteel Harper could not have predicted our current circumstances while writing On Vanishing: Mortality, Dementia and What it Means to Disappear, her examination of the fears and metaphors that the Western world has attached to dementia makes for urgent reading now, when nursing home patients and older people are at risk of being reduced to statistics, their lives considered expendable by politicians and others eager to reopen the economy. It’s a reminder that our most vulnerable citizens do not merely vanish or fade away, and that we all exist somewhere on this continuum of normal human development.
In this piercing and surprisingly hopeful book, Harper draws on her own experience as a minister to older adults, a chaplain in a nursing home, and a granddaughter in order to examine our fears surrounding dementia. The people who experience dementia are still vital, she argues, with preferences, opinions, and things to say. Weaving together compelling personal stories with theology, literature, philosophy, history, and science, Harper shows what our resistance to hearing these voices says about us and our fear of mortality. Like Andrew Solomon’s Far from the Tree or Eula Biss’s On Immunity, two works that challenge assumptions and fears about disease and medicine, this is a mind-opening book that deserves a wide readership.
I interviewed Lynn as we both sheltered at home in April.
BELLE BOGGS: This is an extraordinary time for anyone to publish a book, but in addition to your work as a writer, you also serve as minister to older adults at Riverside Church in New York City, the current epicenter of the COVID-19 outbreak. Can you tell me a little about how your life has changed since the outbreak began?
LYNN CASTEEL HARPER: On March 12, the church’s older adult group that I lead met for the final time before going on hiatus. The virus was rapidly descending upon the city, taking aim at exactly the population I serve. I was never so happy to see people I love get out of my sight, go home, and stay home. The next morning my husband, who teaches at a college in Maine and keeps a small apartment there, drove seven hours to pick me up. I’ve been in Maine since. The church shifted to online worship that weekend, and my clergy colleagues and I began working remotely.
The best part of my job — being with elders in the non-pixelated flesh — has vanished, along with visiting congregants in hospitals and nursing homes. That’s been hard. But I am encouraged by how the older adults I know are supporting one another. When one member, who is blind, was having difficulty getting groceries and supplies, other members coordinated a plan to help him. They are calling, writing, and emailing each other, and I am in touch with them, too. Pandemic aside, social isolation is an everyday threat for elders, but I’m hearing from many of them right now: “I know how to do this; being alone is familiar territory!”
As of this writing, most of our elders are healthy, but the reports of illness are trickling in, which is scary. To have a book come out on “what it means to disappear” in a moment when actual lives have disappeared, are disappearing, sometimes feels a little too pointed. While I focus on disappearances related to dementia, I’m also discussing what it means to suffer loss and to face our fears of dying.
I’ll admit I was a little afraid to read On Vanishing — not only because of the fear of the idea of “vanishing” through cognitive impairment, but also because of the guilt I carried about the way some of my older relatives were cared for in their last years: a great-grandmother who died in a nursing home, a grandmother I didn’t visit enough. How did we develop such a “dementia-phobic culture”?
We’re up against a whole Western philosophical tradition that equates personhood with rationality. Descartes’s “I think, therefore I am” still deeply informs how we view ourselves and others. By this formulation, thinking — not relationships, not affection or care in community, not empathy — is the defining attribute of what makes us human. This tradition throws into question the humanity of people who have trouble thinking, or who don’t think in normative ways.
The rise of industrialization and the middle class also has contributed to increased stigmatization of cognitive impairment. As one’s worth became closely tied to one’s ability to participate in an increasingly specialized, fast-paced economy, dementia became not just one among many difficult conditions but a shameful, discounting illness. Dementia is an affront to the American myth of independence; if we’re supposed to pull ourselves up by our own bootstraps, then the dependencies associated with dementia represent a kind of failure. It’s hard not to see patriarchal logic at play here, too, which denies or dismisses the creativity and intelligence of caregiving — work that has historically been relegated to women — as well as the creativity and intelligence of people who receive care, especially people with cognitive impairments.
Your interest in working with adults experiencing dementia grew in part from your years working as a chaplain at a retirement community in New Jersey. You write that you remember an administrator giving you a tour of the skilled nursing unit, telling you that you wouldn’t spend much time with the dementia patients, who could hardly be expected to remember your visits. You also allow that you may have misremembered this tour — perhaps it was something the administrator said directly, perhaps it was an indirect attitude you absorbed, or maybe it was a bias you carried within yourself. You write, “[the patients] were considered to have disappeared from themselves, and I was expected to disappear from them.” What changed your mind? How did you come to see dementia differently?
The more time I spent on the dementia unit, the more I got to know the people as complex individuals with histories, preferences, relationships, desires — not as undifferentiated “dementia sufferers.” I talk in the book about Betty, an evangelical resident on the unit who started a Bible study with me. The study, which eventually morphed into an interfaith spirituality group, opened me to whole new layers of understanding. I witnessed how people with deep dementia engaged stories, appreciated spoken and silent prayer, and actively encouraged one another. They enlivened me, teaching me the importance of spontaneity and silence. The richness I witnessed did not square with the stereotype of the “vacant” dementia patient.
While really knowing people with dementia changed my mind, equally key was placing these relationships in the context of my faith tradition, which seeks to prioritize “the least of these,” understanding them as the embodiment of Christ. So, it’s not just about being nice to sick people as an act of charity — it’s about seeing them as the incarnation of Christ, which transforms me. The little church where I spent my seminary years and that ordained me — a remarkable gathering of everyday people — ran a homeless shelter, gave half of their offering away, served communion in back alleys. They taught me to always ask: “Who is being left out, and why?” When my spiritual antenna is working properly, it goes up whenever a group is being dismissed or discounted. And reading Tom Kitwood’s Dementia Reconsidered solidified my sense that people with dementia suffer from unjust treatment just as much as from their disease.
Like so many of us, you have a personal connection to dementia, which you trace alongside your research and the stories of older adults you’ve worked with as a chaplain. Your grandfather, a doctor and World War II veteran, suffered from dementia before he died, and you also learned that your parents each carry a copy of a gene variant linked to a higher risk of Alzheimer’s. Why was it important for you to include some of your own story in the book?
This may have something to do with my sensibilities as a preacher. When I’m in the pulpit, I always strive to preach for and among the congregation, not at them. If I don’t connect with the scripture I’m preaching on — if I don’t open myself to being changed or feeling something — then why should I expect the congregation to relate? This does not always mean sharing a personal story, which can become gimmicky or narcissistic, but the sermon should prompt some gut-level engagement for the preacher. I feel the same way about writing for the page. I aim to write for and among readers, not at them. This doesn’t require overtly confessional writing, but I do need a visceral link to the material. Fortunately (or unfortunately), I didn’t have to search too far to find this connection with dementia. I hope that including some of my own story might help to humanize and soften what can be a very hard, intimidating subject.
Though we see examples throughout On Vanishing of the negative ways bias and economics shape elder care, you also write about people and institutions pushing back against what geriatrician Bill Thomas calls a “declinist” view of aging. Tell us about what you’ve seen in these newer models, and why they give you some hope.
The newer models I’ve encountered have a common emphasis on holistic well-being. They represent a philosophical shift from seeing people with dementia as patients in need of management to subjects who deserve the same rights and respect as others. These efforts focus on enabling people living with dementia to engage in regular daily life, shape their own surroundings, and give back in meaningful ways — freed from being defined by what they cannot do. I find hope in aggregate living settings that run on a more human scale, that articulate and implement person-centered values: The Green House Project in the United States, Schlegel Villages in Canada, and Hogeweyk in the Netherlands. But more than anything, I am compelled by visions of dementia-inclusive communities, where people are welcomed and supported within their own homes and neighborhoods. Geriatrician Allen Power, in Dementia Beyond Disease, outlines the features of a “Dementia-Inclusive Society,” which includes redesigning neighborhoods, creating intergenerational networks, and educating the general public about dementia. That sort of revolution excites me! I hope this pandemic nightmare will lead the United States to change our health-care system, opening the way for more and better support of community care initiatives and care workers.
In examining the metaphors surrounding dementia, you focus especially on its association with darkness — the lights going out, “endless darkness,” the “dimming mind” — and write that you want to “undermine light’s supremacy, to affirm dark’s worth.” How is this also a spiritual process for you?
We often use darkness as a synonym for evil, menace — as something to overcome. We see dementia in much the same way, as something bad and shameful that needs to be eradicated. So part of my spiritual practice involves intentionally reclaiming the beauty and efficacy of darkness. For me, embracing darkness (and dementia) has meant becoming more comfortable with absence, silence, emptiness — which has led me to a faith less consumed by words and propositional content, and more taken with the affective and contemplative: Centering Prayer, labyrinth walks, reading the mystics. The Cloud of Unknowing speaks of a “darkness about your mind” that actually makes way for deep connection with God — that’s a real shift away from seeing darkness/dementia as an enemy. A group of old Baptist women taught me contemplative prayer, the practice of letting thoughts fall away, as opposed to generating, examining, speaking, and writing them. These women, the oldest of whom was 98 and blind, seemed to understand the need for a community based on something other than shared skills and abilities.
Reckoning with the shadow side of life — doubt, sorrow, limitations, death — not as evil but as part of the human experience is important to me. Being with people who are dying, sick, grieving, or otherwise suffering keeps me grounded in this way. Older adults at my church, the majority of whom are African American, often understand the power and beauty of darkness. I try to listen to these teachers, too.
On Vanishing arrives at a time when the elderly and cognitively impaired are at even greater risk — not only of illness but also of isolation — and where our sense of interconnectedness is heightened. If, like Susan Sontag’s Illness as Metaphor and AIDS and Its Metaphors or Eula Biss’s On Immunity, your work is a kind of corrective, what do you hope it accomplishes for readers?
I hope it brings dementia down to earth a little, deflates fear, and gives some hope — not for a cure, but for the possibility of a good life with dementia. By lifting up the untold or lesser-told stories of dementia, I hope the book articulates what others have experienced but didn’t have the words or platform to share. I hope it celebrates the humanity of people living with dementia, revealing them as vital individuals — not a blur of disability disappearing into their disease. I hope it moves the needle a little toward destigmatizing the condition. And I hope it helps people like me who don’t have dementia to value ourselves and others differently — prioritizing kindness over cleverness, compassion over cognitive acumen.
Belle Boggs is the author of The Gulf, The Art of Waiting: On Fertility, Medicine, and Motherhood, and Mattaponi Queen. Her stories and essays have appeared in The Paris Review, Harper’s Magazine, Slate, and elsewhere. She teaches at North Carolina State University.