WHAT IT MEANS TO BE HUMAN: THE CASE FOR THE BODY IN PUBLIC BIOETHICS

O. Carter Snead

(Harvard University Press, 2020. Hardcover, pp. 336. Also available on Kindle.)

Reviewed by Maria McFadden Maffucci

O. Carter Snead’s What It Means to Be Human: The Case for the Body in Public Bioethics is a vital and enlightening book; an engaging dive into the history and philosophical undergirding of the public bioethics on which our jurisprudence concerning human life currently relies. While the field of bioethics was developed in response to “the reported use, abuse and exploitation” of human subjects in research (like the infamous Tuskegee study on African-American males in the 1930s), Snead shows that America’s contemporary bioethics overwhelmingly disregards our human reality—embodiment—thus consistently putting vulnerable human lives in peril.

Snead, who is William P. and Hazel B. White Director of the de Nicola Center for Ethics and Culture, Professor of Law, and Concurrent Professor of Political Science at the University of Notre Dame, writes: “At its foundation, American public bioethics has a reductive and incomplete vision of human flourishing and identity,” one that “defines the human being fundamentally as an atomized and solitary will,” relegating “the natural world and even the human body itself as merely inchoate matter to be harnessed and remade in service of such projects of the will.” Bioethics has a fatal flaw: overlooking that we are embodied beings.

“As living bodies in time, we are vulnerable, dependent, and subject to natural limits, including injury, illness, senescence and death. Thus, both for our basic survival and to realize our potential, we need to care for one another.”

The key principle of our contemporary bioethics, Snead argues, is “expressive individualism,” a term coined by sociologist Robert Bellah in his 1985 book Habits of the Heart, the result of his interviews with Americans on how they see themselves. “Bellah found that human flourishing consists in the expression of one’s innermost identity through freely choosing and configuring life in accordance with his or her own distinctive core institutions, feelings and preferences.” This preference for individuals’ choices over acknowledging their dependence on others has steadily permeated law and policies in each of three main areas of jurisprudence Snead covers: abortion, assisted reproduction, and assisted suicide/euthanasia. In abortion, the law “frames the public question as a zero-sum conflict between isolated strangers,” forgetting that it actually involves the most intimate relationship of mother and child; in the “largely unregulated landscape of assisted reproductive technology,” prospective parents and those they turn to insist that the right to have children trumps the consequences

on the vulnerable persons affected or discarded in these procedures; and at the end of life, the law “stubbornly clings to a vision of the patient as an atomized autonomous will as its animating premise, when the embodied reality of such patients is the opposite.” (Consider a cancer patient “choosing” death while in the grips of a yet untreated clinical depression.)

The great contemporary moral philosopher Alasdair MacIntyre looms large among the scholars in this book as a brilliant and influential critic of modern society and its lack of virtuous care of the vulnerable. Snead looks to MacIntyre’s “virtues of acknowledged dependence”; McIntyre insists that to be an embodied human is to be essentially dependent on others, from our earliest days to our final ones, and that human beings exist on a “scale of disabilities.” He sees the paradigm for human caring for one another at all stages as parenthood, and, writes Snead, “pointed to parents of disabled children as the pristine model of this form of care.”

Professor Snead here not only explores the anthropological dimension of our public bioethics, he also offers ways to work for better solutions, suggestions perhaps not immediately palatable to either political side in our terribly divided political culture, but which point to an alternate vision of human solidarity. “Issues and laws,” he writes, “must be reframed according to the categories of connectivity of the networks of giving and receiving that embodied beings need to survive and flourish.” Concerning abortion, for example, “a legal regime for abortion rooted in the anthropology of embodiment would protect unborn children from conception” and at the same time “offer maximal support for their mothers, providing for their health care and other needs, both during and after the pregnancy.’’ Where networks of care are absent, “the law must intervene to protect the vulnerable from exploitation and harm, and from the temptation to harm others or even themselves in the pursuit of their own desires and interests.” Law and policies for the vulnerable are of particular interest to me. I found Alasdair MacIntyre’s depiction of special-needs parenting as the model of care momentarily disorienting—as the parent of a disabled adult, I often have to fight feeling like a failure. I wonder: Is this because the culture’s insistence on achievement and inspiring accomplishments damages our acceptance of the limits caused by physical and mental conditions? We often see stories on the evening news about a disabled individual beating the odds to attain some achievement, and we tear up and cheer—but in celebrating them do we ignore the virtue of accepting our children just as they are, which takes its own grit and perseverance?

More concerning, What It Means to Be Human reinforced in my mind the dangers of expressive individualism for the disabled. My husband and I recently attended a seminar at our son’s agency regarding guardianship. The message was very upbeat and “client”-centered. We were told several stories of parent-guardians of disabled individuals who had obstructed their adult child’s wishes—to marry, for example, or move out (or, in a young woman’s case, not be sterilized). We were told that the “trend” was away from the guardianship process, in favor of the rights of the disabled to make their own choices. The agency’s website (thearc.org) explains:

Like their peers without disabilities, individuals with Intellectual/Developmental Disabilities must be presumed competent; they must also be assisted to develop as decisionmakers through education, supports, and life experience. Less restrictive means of decision-making supports (e.g., health-care proxies, advance directives, supported decision-making, powers of attorney, notarized statements, representation agreements, etc.) should be tried and found to be ineffective in ensuring the individual’s decision-making capacity before use of guardianship as an option is considered.

I left that session emotionally rooting for the rights and dreams of the disabled—what mother wouldn’t?—and considering a health proxy document the most important immediate need for my son. But I’ve since realized it is not enough. If he is conscious and deemed able to advocate for himself, and a doctor tells him that some treatment or lack thereof is best for him, he will agree, because he likes to be agreeable, and because he doesn’t have the capacity to understand the threats to him inherent in quality-of-life biases.

A recent story from NPR’s All Things Considered (“As Hospitals Fear Being Overwhelmed by Covid-19, Do the Disabled Get the Same Access?” December 14) is a chilling example that, even with the proper documents, bias against the disabled renders this kind of “rights talk” useless. Sarah McSweeney was a young woman with multiple disabilities, living in a group home run by Arc Oregon, who was transported to the hospital with suspected pneumonia. She travelled with a legal document called a POLST—Portable Orders for LifeSustaining Treatment—a form for the seriously ill to take with them to inform physicians of their wishes, which she had filled out with assistance from her caregivers. Arc employee Heidi Barnett said: “We had her at full code. So all treatment. Because she was young and vibrant and had a great life. And that was her wishes, that’s what we gathered from her. She wanted to be alive.”

However, the several doctors who treated Sarah over the course of three weeks, as well as the hospital’s social workers, repeatedly questioned this directive, and eventually countered it by refusing her lifesaving care. Nurse manager of the group home Kimberly Conger recounted that, when aspirational pneumonia was discovered severely affecting one lung, she and the doctor “discussed the possibility of [Sarah] being intubated and letting that lung rest, giving her time to heal and letting the antibiotics do their magic.” But then the doctor himself pushed to rewrite McSweeney’s care document to a DNR—Do Not Resuscitate, saying that intubating her was a matter of risk versus quality of life. Conger said: “I was like, ‘But she has quality of life.’ And he looked at me and goes, ‘Oh, she can walk? And talk?’”

The hospital decided that aggressive treatment would cause “more harm than benefit.” Sarah McSweeney died of severe sepsis at age 45—a case that speaks to a warning Snead voices in his chapter on end-of-life decisions: “The temptation to alleviate suffering or disability by eliminating the patient must be resisted.”

Sarah’s story is reported in the context of Covid-19 and the strain on our healthcare system (though I am not at all sure she would have been saved preCovid), but I do think that our current situation makes Snead’s message in What It Means to Be Human even more urgent. Indeed, we can see expressive individualism vs. embodiment at play in the debate over masks to prevent the virus’s spread, and in the anxiety about the new vaccines. On the one hand, people express the understandable desire to exercise their individual will and follow their own conscience about what they put on their bodies and what they put in their bodies; on the other hand, the realities of physical embodiment and vulnerability to disease could make this freedom to choose at odds with one’s duty to care for and protect oneself and others.

In his important book, O. Carter Snead asks us to advocate with renewed conviction: As embodied humans, we have crucial human rights as well as inescapable vulnerabilities—and a duty to care for others. Our law and policies must prioritize the right to life and the duty of care for all humans, no matter their age, location, or abilities.

—Maria McFadden Maffucci is editor in chief of the Human Life Review.