PloughCast 21: Disability, Embodiment, and What It Means to Be Human

About This Episode

Susannah and Peter talk with O. Carter Snead about his book What It Means to Be Human: The Case for the Body in Public Bioethics. They examine the question of the anthropology of expressive individualism as the framework for our current legal bioethical regime, and look at hot-button cultural issues including abortion, assisted reproduction, assisted suicide, and end-of-life care.

How should we die? How can we value and care for those who no longer have the same abilities they had when they were younger, but who are still vital members of the human family?

How should we make babies? How can we guard the mystery and gift of children from a false sense of our own mastery over their creation?

How should we live? How can we become the people we are meant to be by exercising care towards those who need our help, and by receiving care from those who love us?

[You can listen to this episode of The PloughCast on Apple, Spotify, Amazon Music, Google or wherever you get your podcasts.]

Recommended Reading

• O. Carter Snead, What It Means to Be Human: The Case for the Body in Public Bioethics
• Leah Libresco Sargeant, “Let the Body Testify”
• Henry George, “Broken Bodies Break Liberalism”

Transcript

I: O. Carter Snead: What does it mean to be human?

Susannah Black: In a conversation I’m looking forward to a great deal, we get to speak with O. Carter Snead. Professor Snead is William P. and Hazel B. White Director of the de Nicola Center for Ethics and Culture. He’s also a professor of law and concurrent professor of political science at the University of Notre Dame and is the author most recently of What It Means to Be Human: The Case for the Body in Public Bioethics. Welcome, Carter.

I feel like I’ve been hearing pre-echoes and then echoes and then lots of people talking about this book. Then I finally read it and when we were doing our “Creatures” issue and then when we’re doing this current “Disability” issue, as I said, so much of what you talk about is central to the way that we think or the way that we try to think at least. Do you want to give an overview, really brief overview, of what your case here is? You’re basically talking about …

O. Carter Snead: Sure.

Susannah Black: … what the underlying issues with a lot of current law are.

O. Carter Snead: The book basically makes two claims. One’s a methodological claim, the other is the substantive claim, and the substantive grows out of the application of the method. The methodological claim is that if you want to understand law most richly, you need to ask the question, what does the law, and who does the law, assume human beings to be? And that’s for the simple reason that law at bottom exists to protect persons and to promote the flourishing [of] persons.

So it’s unavoidable that the law rests upon a kind of ex ante understanding or preconception of what persons are and what human flourishing is. Now, that’s not the very same question as when life begins or who counts as a person, although it’s deeply connected to those questions which are essential to the issues in bioethics that I take up, the issues of abortion and assisted reproduction and end-of-life decision-making. But it’s meant to be a broader claim.

The law has to have assumptions about what you and I are and what we need and what the threats to us are and what our flourishing consists in. So the best way to understand law, the deepest way to understand it, I argue, is through this particular … what we’ll call an anthropological lens. When you ask that question, when you analyze different areas of the law with that inductive question in mind, [you’re asking] what exactly does the law think we are, what we need, what should we be afraid of and what should we pursue?

When you ask that question and you focus that question on particular areas of what I describe as vital conflicts of American public bioethics, the law of abortion, the law of end-of-life decision- making, the law relating to assisted reproduction, what you find is the vision of the person in human flourishing that the law assumes is woefully incomplete and inadequate, so much so as to be dangerous.

For twenty-plus years, I’ve been working in public bioethics and trying to get to the bottom of why it is that the law so frequently fails to protect the weakest and most vulnerable among us: children, the disabled, the elderly, and so on. The answer that I came up with and what I wrote up in the book is that it gets the fundamental question of what it means to be human wrong. What it misses about our humanity is our embodiment. It misses the fact that we are inexorably bound … We are our bodies. We don’t have bodies, but we are bodies. We’re a dynamic union of mind and body.

The law only focuses on the mind and the will as the fundamental reality of human existence. It takes the fundamental reality of human existence as the individual and it describes what human flourishing is as the cognitive practice of interrogating the depths of your own sensibilities, finding your own authentic truth, and then expressing it and configuring your life plan accordingly and pursuing your own truth, your own authenticity. That’s what the law thinks people are and that’s what the law thinks human flourishing is, at least as applied to these particular areas of bioethics.

And that just doesn’t even come close to describing what a human being is. That describes maybe one snapshot on the arc of human life for the very most privileged and successful and lucky people. It doesn’t capture the life arc of everybody. It doesn’t describe accurately entire swaths of the human population who are either temporarily or permanently in a state of complete and utter dependence upon others.

But what I argue is, because the law understands human beings through this lens of – I use Robert Bellah’s phrase, “expressive individualism.” That’s the anthropology that I just described. Because it only views humanity through that lens, it misses the entirety of what it means to be embodied and then what follows from our embodiment, which is our vulnerability, our mutual dependence, and our subjection to natural limits. So there are entire swaths of the human community that are invisible to the law, that are left unprotected by the law, and then human flourishing is not served either.

What I describe as necessary for human flourishing is what Alasdair MacIntyre describes as networks of uncalculated giving and graceful receiving, which are essentially networks of people who make the good of others their own good. That’s what we need to survive as embodied beings. That’s what we need to flourish as embodied beings. That’s what we need to learn to become the thing that we’re supposed to be, that is to say, to become the kind of person who can make the good of another their own good without seeking anything in return.

So that’s what the law should assume and that’s the measuring stick we should use to describe or to determine whether law and policies are working or not. But that’s not what’s happening right now in the areas of the vital conflicts of public bioethics that I talk about. I suggest that we could try to focus more on these networks and focus on the virtues of dependent rational animals,, virtues of uncalculated giving and graceful receiving. They’re necessary to shore up these networks of people.

Peter Mommsen: So is this view, what you argue to be a false view of what human beings are, is this a new thing? I mean, you’re speaking specifically about the law in your book, which I thought was a very helpful lens to think about how society at large also extra-legally approaches questions of what it means to be human, what it means to flourish. But is this expressive individualism a new development? Specifically in law, we tend to think of law as resting on Roman civil law, common law, and Anglo-Saxon countries’ law and history of development, which historically was much conditioned by Christianity. Where did the snake enter the garden? Or was it always there?

O. Carter Snead: Let me say this. Two things. One is about law generally, right? Law is irreducibly normative. Law always aims at particular goods and always aims away from or tries to remediate or even punish particular harms. So the law has two pedagogical mechanisms, one of which is it reflects the goods and harms of the society it particularly cares about, how people see themselves, and also informs people as to what they should think about themselves, for better or worse.

And that’s true of the norms of a given polity, but it’s also true of an anthropology of a given polity. So, insofar as the law has these conceptions of expressive individualism undergirding these areas that I focus on in the book, that’s in some ways a reflection of where we are, I think, as a country, at least in the most important circles that are responsible for making the law and interpreting the law. Then also, I think it’s unfortunately a teacher of folks as to how to think about how they should see themselves.

Now, where did this start? It’s a very deep and interesting question. In the book, I talk a little bit about Mary Ann Glendon, my friend. Recently retired from Harvard Law School, wonderful legal scholar, and diplomat. She was ambassador of the Holy See. She was a member of the President’s Council on Bioethics, which is where I got to know her originally, when I was serving as the general counsel of that body under the wonderful chairman Leon Kass. She talks about the notion of individualism being built especially in American law.

If you look at American law, both public and private American law, the individual is the center of most of the laws’ considerations. And Roscoe Pound talks about this. She [Glendon] has a really interesting essay describing the person in American law and individualism in American law. I think the United States in particular is especially individualistic for reasons that others know more than I do in terms of the genealogical diagnosis of what entered into the law. The expressive individualism more generally is very old.

Charles Taylor has a wonderful genealogy of expressive individualism, and I talk about it in the book. That begins with Rousseau and then makes its way and grows and becomes enlarged in the romantic literary era and Byron and Shelley and others. Robert Bellah’s work in Habits of the Heart in 1985, he’s a social scientist, diagnosed this self-understanding as a more popularly shared view, self-understanding, that really took hold in the ’60s and ’70s here in the United States.

I mean, it’s a very deep question as to where it comes from and where it comes from in American law and it would take a lot more time and thought to give it the attention that it deserves. But it is true that American law in particular and American society in particular tends to be more individualistic and maybe a more fertile ground for expressive individualism to grow.

Susannah Black: There are two parts that I’d like to highlight, I guess. One is just that the way that you describe law as perpetually being surprised and unable to deal with human beings as they are, and particularly human beings when they’re infants or when they’re fetuses and human beings at the end of their lives. The other aspect is that it seems as though the law that seems to address human beings at their peak earning years or at their prime of life actually also doesn’t see those human beings as they are, because in our prime of life, we also need to be needed.

We need to be part of those networks of care, maybe in more of a giving mode at that point. But it’s not like you are immune from those networks of care except in those very young or very old periods of life. We need to be part of those networks of care throughout our lives. That actually just highlighted for me the way that how we treat each other at our weakest has an impact on how we treat ourselves and each other the whole time. Do you want to talk a little bit about that?

O. Carter Snead: I couldn’t agree more. You hear people say, and it’s true, that you can measure the decency of a society by how it treats its weakest members. I also think it’s really important to amplify what you just said about the importance of these networks of uncalculated giving and graceful receiving for the strong as well as for the weak, because in the book, I point out that it’s not just that we need them for survival. It’s not just that we need them when we’re sick or disabled or young or old, or what have you, but we need them, as you say, when we’re strong.

We need them to be in the posture of uncalculated giving because that’s – and this is a normative claim that I make – that’s what we are, right? We are made for love and friendship by virtue of our embodiment. We stand in a relation to each other by virtue of the fact that we’re embodied beings who are fragile and vulnerable. And it’s not simply a challenge or an obstacle, to be embodied. It’s a gift. There’s a wonderful moment in the early stages of writing the book where I took my old friend and mentor, Leon Kass, to dinner at his favorite restaurant in DC, which I think just closed recently, sadly.

We were at dinner and I showed up and gave him a hug. And Leon’s a … He probably wouldn’t want me to say this. But he’s a great hugger. So we sat down and we started chatting and I was going on and on about this book I was going to write and how thinking entirely about the challenges and deficits of embodiment and how they make us vulnerable and therefore dependent, and so they place us in a relationship to each other. He said, “Well, it’s not just a challenge.” Right? He said, “If we weren’t embodied, we couldn’t have hugged each other when we met at the front door of the restaurant.”

He’s like, “There are great gifts that come with being embodied. There are great gifts that come from mutual vulnerability, mutual dependence.” Like I say, you get as much in terms of developing into the thing that you’re supposed to be by taking care of other people. We’re most human when we’re taking care of each other. And of course, there are some people, the very severely disabled, who also participate in these networks of uncalculated giving, graceful receiving simply as the passive recipient of unconditional love and care and they’re still part of that network.

It’s not the case that they’re excluded. It’s not a network of only people who can somehow acknowledge or recognize consciously the benefits that are accrued from their existence in their network. So in any event, that’s a long-winded way of saying I completely agree with what you’re saying and it is the case that we just have to recognize that these networks aren’t just for survival, they’re not just for meeting our needs, they’re for learning to become the thing that we are and that we’re meant to be, which is, I recognize, a deeply normative claim that I’m making.

II: O. Carter Snead: Embodiment and Disability

Peter Mommsen: What you’re just saying about how particularly, for instance, those with profound disability, by their embodiment, can help focus us on these networks of giving and receiving … In the process of reading your book and also putting together this most recent issue of Plough that’s our springboard for this series of podcasts, I’ve been thinking more and more about that. I wonder if people just haven’t had that experience in their own lives, because it’s only through embodiment that you can learn to appreciate the value of other humans as embodied.

It may be that, particularly you look at the last couple of years when people have been physically isolated, we’ve become estranged from our own embodiment in a lot of ways and it makes it a lot harder to appreciate what it can be just to say, be with a person who’s disabled with whom one can’t necessarily have a fascinating conversation, who may not be able to talk, who may need a lot of help in the day, and yet you need to have done it to know that person is a real person.

Everybody is [as] capable as anyone else of that kind of uncalculated giving and receiving that you were talking about. So I wonder how much of this is also a product of this kind of technological isolation that we’ve got ourselves into in the last couple of decades.

O. Carter Snead: I think there’s a lot in what you’re saying. The one thing that immediately reminds me of is how we are depriving ourselves of being present and having the encounter with persons with disabilities by virtue of the fact that a lot of persons with disabilities are being eliminated in the womb by abortion. The percentage of children who are aborted because they have Down syndrome, as you all discussed in your Disabilities issue, is staggering. Iceland claimed that they had successfully defeated Down syndrome, right? There was no more Down syndrome in Iceland.

What they meant was they were killing all the unborn children who were diagnosed with Down syndrome before they could be born. I recognize it’s a harsh way of saying it, but that’s the reality of the matter. The absence of these people from our lives is a massive deficit in our own understanding of what it means to flourish as a human being and learn how to [be] humane ourselves. I was thinking, when you were talking just now, about the article that you wrote about your friend, Duane, the disabled young man that you worked with and befriended and helped take care of.

The kind of encounters that you were describing, they weren’t verbal encounters, they weren’t the kind of encounters you have in a faculty lounge or in a college coffee shop or in wherever, but they were richly human. You described being with him out in the woods and him lying in the leaves and even just the glances that you exchanged were fraught with deep, deep human meaning. And you’re right.

If you don’t ever meet a person who has a disability or even be around someone who makes you uncomfortable because of their physical disability or their physical impediments and you don’t realize what that discomfort in yourself means and how it’s necessary to grow out of that and to learn to be with and recognize another fellow human being, albeit one in possibly a distressing disguise, as Mother Teresa used to say about the poor in Calcutta, we’re never going to be able to become what we’re supposed to be.

We’re never going to grow into and mature and become fully human ourselves unless we learn how to take care of each other and especially take care of people who have profound disabilities, which is why I think it’s essential that we structure society in a way in which persons who have disabilities and those who don’t live together. You have beautiful models of this, like in the L’Arche communities. There are wonderful communities doing this.

At the Ukrainian Catholic University, they put in place this wonderful program where persons with disabilities lived in community with the students. And it was a fantastic antidote – .Which is not to say that these people simply exist to teach us things about ourselves; obviously, that’s not the case – but it was a useful antidote to what you described, Peter, in your article as the sort of meritocratic fixation that the value of people is in their cognitive capacity to produce value or insight or get good grades or work at Goldman Sachs or whatever, go work for a nonprofit. Who knows? It doesn’t have to be a capitalist thing. But you know what I’m saying.

Bishop [Borys] Gudziak, the Ukrainian director of the university who now is a patriarch, I think, of North America for the Ukrainian Catholic Church, said when you encounter these folks, they don’t want to know what your GPA is or where your summer internship is or where you’re going to go to work after you graduate. “They have one question for you,” he said. And their question for you is, “Can you love?” You think about the value of that, I mean, that’s as human as it gets, right?

That’s stripped down to what it is that we need to be and what we need to embrace about ourselves and our friends and neighbors and community. It’s not about what we can produce. That’s fundamentally what it’s about. And it’s in that kind of moment of encounter with a person with disabilities that that emerges as the truth.

Peter Mommsen: You’re getting at one of the themes that we keep on coming back to, is this is not a niche issue. So often we speak of disability as one of those niche issues, it affects a certain subcategory of people. Thank you for what you said about the story of my late friend, Duane, but that’s what he taught me. It really is a habit of the heart, to borrow Robert Bellah’s phrase, that you have to practice. You need to do it to develop it.

Then it’s not just about the person with this disability that you are in relation to, but really about, first of all, your relationship to yourself. If you think of yourself, as in some ways I feel I used to and probably still do, think of yourself in terms of your measurable achievements and qualifications, are you going to think of your kids that way, your spouse that way, everybody else in the world that way? It really leads to a deeply flawed and twisted sorting of people that goes way beyond the apparently narrow question of disability and people with disabilities and disability rights.

O. Carter Snead: And it gets dark really quickly. I mean, you have people who will say without any kind of embarrassment that they would of course abort their child with Down syndrome, or they would of course discontinue life-sustaining measures for a child or a loved one who was incapable of ever recovering their full cognitive functioning because those are not lives worth living. I mean, that’s a phrase we’ve heard before, albeit in German. I think it’s a direct result of this fixation on achievement and merit and producing value.

And that’s not meant as simply as a criticism, you see it everywhere. I mean, I teach at a wonderful elite research university that is deeply Catholic and very intentionally Catholic, and you constantly … It’s like a gravitational pull, like, “Oh, well, what internship? What’s your GPA? What journals are you on? What do you want to do after you’re done?” You quickly reduce people to those elements of their capacity to perform or their record of achievement. It’s just really unhealthy and we have to constantly fight it.

People who are in the knowledge-producing business, people who are in journalism, people who are in law, people who are opinion makers, these are always people drawn from these communities where merit was the central animating goal and central animating quality and it’s disastrous to one’s full understanding of, again – and I’m not suggesting that I’m free of these problems. I mean, myself, I find myself all the time thinking about this stuff. I mean, I have teenagers, I was a teenager, and I’ve got two wonderful little boys, identical twin boys, who are on the autism spectrum.

Then I’ve got a sixteen-year-old who is neurotypical. And we’re talking about where he’s going to go to college and that sort of thing and you get drawn into this bizarre and oppressive self-imposed prestige and merit-based thing that is the antithesis of actually loving each other the right way.

Susannah Black: Yeah. I mean, it’s such an interesting balance in a way, because of course, we are called to exercise our gifts. And one of the things that when we are at the strong points of our lives, one of those gifts precisely is being able to show up for other people. They’re called gifts, we are meant to give them. We are not meant to use them as CV fodder. The anthropology that you’re describing is not an anthropology of human passivity or not seeing humans as called to a greatness. It’s just questioning the model of greatness that we’ve been given.

I mean, one of the phrases that I thought was actually really helpful that came at the end of the book, or I noticed at the end of the book, was … so I was going through this as I was reading and you were talking about seeing ourselves as independent, individual willers and choosers. Then I was thinking, “Versus what? How is it that we should think of ourselves primarily?” The phrase that you used, I think in the last chapter, was “members of the human family.” I thought that was really helpful as a touchstone.

Are we living now as though we’re members of the human family? Whether or not we are at our most independently willing and choosing, that is what we have always been and will always be. That is what we were before we could will and choose and that’s what we’ll be in our last moments, and – we’re Christians – in the resurrection of the body. That is what we always are. So that was a really helpful phrase for me.

O. Carter Snead: Thanks for that. It can seem a little abstract when you’re talking about networks of uncalculated giving and graceful receiving and all these virtues of just generosity and hospitality and making the suffering of another person your own suffering, and then of course the virtues of graceful receiving, gratitude, chief among them openness to the unbidden and tolerance of imperfection, which are essential by the way for making room for people with disabilities. But that’s pretty abstract. To make it concrete, what we’re talking about is a family, right?

I mean, the family is the network of uncalculated giving and graceful receiving par excellence. It’s like that’s what it is. You can see in parents and children, intrinsic to those relationships, those roles, not the individual wills of the participants, but the roles themselves. Being a parent inclines you, directs you to a particular set of unchosen obligations that you have to care for and to support the wellbeing of your child, and being a child gives you a whole array of unearned entitlements that you don’t have to earn to be cared for by your parents.

You don’t have to earn the right to be not left alone. Then those relationships as the parents age and the child gets stronger and older, that balance recalibrates and those obligations and entitlements invert and they run in different directions, right? But in the case of the communities are like … I mean, we don’t want to go too far with the analogy, I guess. But communities are like families and we do owe obligations of care and concern to one another just by virtue of our shared membership in the human family. So yeah, I’m glad that that resonated with you.

III: O. Carter Snead: Abortion, Assisted Reproduction, and End of Life Issues

Susannah Black: Let’s talk about where the rubber meets the road. This is a book, among other things, about what are basically a lot of hot-button, culture war-ish issues. We’ve touched on abortion a little bit and you’ve talked a great deal about the way that seeing unborn children as children of particular mothers and fathers, children of parents, as opposed to persons, or possibly not persons, in abstract competition with other persons who are strangers to them, can help us think more accurately. But there are other practical issues beyond abortion that you touch on as well. Do you want to describe just the three or four top issues that you look at in the book?

O. Carter Snead: Sure. Yeah. I mean, in a way, the arguments, again, they are focused on law and public policy, but they are arguments ultimately about how to care rightly for each other. And it begins by framing the human question itself and the reason … and just to stay on abortion just for one second, the reason that we have the most permissive and aggressive law on abortion really almost in the world; we’re almost without peer in terms of how permissive Roe v. Wade and Planned Parenthood v. Casey are, the paradigm that they’ve put in place, that they’ve imposed on the country, in terms of access to abortion throughout nine months of pregnancy. In the book, I explain mechanically, legally, doctrinally, how that works. The reason for that really begins with the misframing of the human context in which the question arises.

Justice Blackmun in Roe v. Wade describes what’s happening in the human context as basically a competition between strangers, a woman and a stranger, sub-personal, less than human, less than personal, a being that is invading and encroaching upon her interests. And we shouldn’t undervalue that. I mean, obviously, unplanned pregnancies are extraordinarily burdensome and we owe women and children and families a duty to come to their aid in every possible way we can when that happens, both with law and with private action.

But when you begin with the proposition that these are atomized individuals and one of them’s a person because they can do the things that make you a person, namely exercise the introspection and the cognitive abilities that make you a person, and you’ve got the other thing that’s less than human or less than a person and they have a conflict over scarce resources that rightly, in the judgment of Justice Blackmun, belong to the woman, it makes sense that she should be allowed to use lethal force to repel that intruder.

But that’s not, properly speaking, what is humanly happening in those contexts, right? You’re actually talking about two living beings, two living human beings, members of the human family, who are not strangers, but already are embedded in a relationship of parent and child. If you frame it that way, [that] this is a crisis involving a mother and her child, every decent society, every decent person is going to stop what they’re doing and rush to their aid and surround them with love and protection and support and to help them in any way that they can.

The anthropological framing affects your response. That’s how we get the law of abortion, I think, fundamentally that basic anthropological mistake, along with a lot of very bad mistakes in terms of constitutional interpretation and understanding what the role of judges are. But I’ll leave that for another time. But as you say, I also talk about other topics. I talk about assisted reproductive technology in which we have the opposite of the abortion landscape.

In the abortion landscape, we’re dominated by the law of the Supreme Court and states and political branches. Basically, we can’t do very much other than what the Supreme Court allows them to do. In the context of assisted reproductive technology, it’s essentially the opposite. It is the Wild West. It’s a completely open field where there are almost no limits on individuals and on practitioners to make a baby by almost whatever means necessary or whatever means are chosen.

Again, it operates through the human framing of the situation that is implicit in that kind of landscape, that legal landscape, which is characterized by a very specific, narrowly understood freedom, is to think about people and what their interests are and the desire of individuals to have a child that they’re biologically related to.

That beginning anthropological mistake, not understanding, but in fact, what we talked about is people who are embedded in webs of relationships already, and including especially what these people want, is not just to impose their unencumbered will on their bodies to produce a child that will then become the vessel of their hopes and dreams – and by the way, let me just say very clearly, I want to be very clear about that, I’m not suggesting that that’s what people who seek fertility treatments have in their minds.

It’s not the anthropology of the patients that I’m talking about. It’s the anthropology of the law itself in constructing or permitting a legal landscape in which there are no protections, restrictions, regulations, frameworks of really almost any kind. In fact, the fact [is] that the people, the patients themselves, don’t merely want to assert their unencumbered wills. What they want is to be parents. They want to participate in a particular kind of relationship. So the law should be constructed in a way to facilitate the flourishing of persons who want to be parents.

And that framework includes the children themselves. You can’t have a parent without a child. So if you’re going to construct a just, humane, and wise system of regulation for fertility care and fertility treatment, you have to measure it according to the standard of, is this a system that is adequately protecting and promoting the flourishing of every single person involved in this interaction, parents and children alike? And that includes gestational surrogates and gamete donors and physicians and technicians: everybody. We have to ask ourselves, is the legal landscape actually well designed to respond to the human needs and threats and risks that are present in this human context? We’re not doing that because we flatten the context and we assume all that matters is to allow certain kinds of people to assert their unencumbered will with the aid of technology. That’s the anthropological mistake infecting the legal system there.

Then the final area I talked about is end-of-life decision-making both in terms of the choices, the freedom to discontinue life-sustaining measures, or to decline life-sustaining measures, as well as assisted suicide. In both of those situations, the law assumes for its part [that] the purpose of the law is to help the autonomous individual chooser to author the last chapter of his or her story in a way that coheres with their own self-understanding. And that completely misunderstands the reality, the clinical reality, of those situations. I focus in the end-of-life decision-making context, declining life-sustaining measures, on people who can’t make their own choices because they are no longer capable of doing so.

So what the law tries to do is shoehorn that very unique clinical context into the paradigm of the autonomous chooser, when you don’t actually have an autonomous chooser anymore. And frankly, when you go to the doctor, you don’t go to the doctor in any context to be an autonomous chooser to impose your unencumbered will on your body. You go because you’re sick and you’re vulnerable and need help. You need help from somebody who knows how to take care of you and who wants to take care of you, who’s interested in taking care of you.

And that’s true in the end-of-life context as well. It seems to me that if we drive everybody to these pre-commitment legal instruments where you’re going to govern your treatment beyond competence, once you’ve lost competence, we’re going to figure out how to manage your end-of-life care strictly based on what you thought you wanted to memorialize in some kind of living will, that’s important, right? Living wills are important, but that can’t be the sole tool to deal with end-of-life decision-making.

You have to have real people involved in the decision-making process, hopefully people who love you, people who have your best interest in heart, making decisions about what your needs are in your current state as this patient. To idealize the autonomous chooser as the patient and to impose that onto the patient who can’t meet that standard is to do a disservice to that patient. And you end up with decisions like, “Well, let’s discontinue life-sustaining measures because this person will never have the same level of cognitive capability that he or she had before. They won’t ever be at the level of functioning they were before.”

That’s just a false idol. I mean, it’s taking an image of the autonomous chooser and making that the standard for whether or not to even continue someone’s life-sustaining care. I think that that’s a serious defect that we see in the law.

Then with assisted suicide, it gets even worse because the regime for assisted suicide certainly in the United States – and it’s worse in Europe – is to facilitate the freedom to end one’s life when we know that the clinical context in which those desires to end one’s life emerge almost always involve things like clinical depression, treatable depression, a sense that one’s a burden to others,.

And the system itself is not designed to take that into account at all. It doesn’t take into account the fragility and vulnerability that’s owing to the embodied state of these patients and instead imagines them to be really just rational choosers who need to facilitate their one final existential choice when that’s generally not at all the actual context of that scenario.

Susannah Black: A couple of different things. First of all, when you go to a doctor, one of the reasons that you’re putting yourself in the doctor’s hands is because the doctor has a vision of what your end is, what a healthy human being is. So the doctor is helping you towards that telos.

You’re not telling the doctor, I would like to be this kind of human being. I would like to be sick in this particular way or well in this particular way. The doctor knows what you ought to be and so helps you become that. You tried very much to make this not a Christian book, which I appreciated because it’s the kind of book that you can put into the hands of people who aren’t Christian. But at the same time, we do have a vision as Christians of what our actual telos is, what our final end is.

Putting ourselves in the hands of people who will help us die to get to that end in the way that we put ourselves in the hands of doctors who will help us live towards the end of being a flourishing human being seems really important. Obviously not help us die in the sense of finish us off quickly, but help us die in the sense of death in accord with who we are as people, people who don’t belong to ourselves. So it seems to me that even if you were in the position of fully autonomous chooser, which sometimes we actually are, there’s still this other question of, what are you to choose as a fully autonomous chooser?

Do you have the right, if you were a fully autonomous chooser with no depression and no compromise in your will, no compromise in your intellect, under those hypothetical circumstances (which I feel like are rare in any human life, everyone’s compromised a little bit) would you then have the right, would it be an acceptable choice to choose to die? It seems to me that the answer is no. That also seems to me to be a kind of memento mori that I feel like I’d like to incorporate into my own life, which is not just living in remembrance that you will die, but living in understanding that you don’t have the right to choose when you will die, which actually strikes me as a profoundly hopeful thing.

One of the things that you talked about as an alternative to the living will framework is the healthcare proxy framework. This was an incredibly helpful section to me because obviously we all are probably going to run into these kinds of things. It had always been very terrifying to me to think about being someone’s healthcare proxy because it’s like I didn’t want to take that burden on, I didn’t want to take that moral burden on. But what you describe is that people almost don’t want to be able to will the circumstances of their own death or care.

People make living wills, they say that they want to be able to dictate, but what they would rather do is turn their care over to people who know them and love them. That seemed to me to be a real, profound liberation from the framework of, “the best way to do this is to impose my will right to the end.” Instead, the best way to do this is to give myself into the care of those who love me and who want my flourishing, my profound flourishing. So that was … I don’t know. Thank you for that, I guess, is one thing.

O. Carter Snead: Oh yeah. Absolutely.

Susannah Black: It does seem to me as though you sidestep a little bit the idea of, even if you were absolutely free psychologically and intellectually to make a decision, would you then have the right to decide when you died .

O. Carter Snead: Yeah. I chose to focus on the clinical context in which the person who is dependent upon life-sustaining measures is not capable of making decisions for themselves because it seemed to me that that was the most dangerous situation legally speaking and morally speaking and just humanly speaking, right? It’s that situation in which people are charged with making choices for other people who cannot in that moment choose for themselves anymore.

What I try to argue is that the emphasis on autonomy and expressive individualism leads us in a wrong direction because it impels us to apply categories that don’t make sense and are incommensurable to the clinical context of a person who can’t decide. And I try to say that it’s really important and that there should actually be legal … Let’s just back up one step. It’s a very hard question as to what the law should do in terms of managing end-of-life decision making.

I mean, we have to think about what it would mean to impose the mechanism involved in that context and what it would do to that context and is it worth it for the law to intervene and to interrogate people about the reasons why they are declining unwanted medical care or discontinuing life-sustaining measures. Of course, discontinuing someone’s life-sustaining measures for the sake of ending their lives, hastening their deaths, or even discontinuing life-sustaining measures for ourselves so that we can hasten our own deaths, is a choice for death, which I think is … I mean, I would disagree with that choice.

I don’t think people have the right to make those decisions as a moral matter. Then the question becomes, should the law interpose itself and say, “All right, every time, every clinical instance in which we’re going to discontinue or decline life-sustaining measures, should the prosecutor or whoever interrogate the family about why it is they’re doing what they’re doing? Or make the individual prove that they’re not doing it to end their own lives?”

I think that where I come down, and I don’t make this case in the book, I mean, I sort of do by omission, that it’s better in the discontinuing life-sustaining measure situation for … Actually, I think I do say it directly. For people who are fully competent, the law shouldn’t intervene to interrogate them about their reasons for discontinuing life-sustaining measures or declining life-sustaining measures with the understanding that that’s going to open the possibility of people making immoral decisions about their own lives.

I recognize that they’re going to make decisions that I strongly disagree with. My point is that I think I’m willing to let that … well, I don’t think. I am willing to let that happen in a regulatory regime rather than interpose the mechanisms of the state into the clinical context involving people who are fully capable of making clinical decisions on their own behalf regarding life-sustaining measures.

Now, when we’re talking about people who are incompetent, I have a different view. My view is the state has to insist that people who are discontinuing life-sustaining measures are doing so in a way that is not imposing their own view of quality of life on the patient, that they’re not making a judgment to discontinue their life because they think that that life is become a life not worth living anymore. Now, bracket the question of whether or not a person should legally be capable of binding themselves to have others do that for them once they’ve lost competence.

I think it’s bad policy. I haven’t taken a position really as to whether or not I would make that illegal. But the law right now, the way it stands, is you have to prove by clear and convincing evidence that you’re implementing the person’s wishes that are specific to this precise clinical context. And in practice, that’s a hard standard to meet. That’s a very high standard and I think that that’s pretty good.

Until I’m convinced that there’s a spate of people being eliminated by their caregivers, I think I’m probably comfortable with the standard of proof and the burden of proof being allocated to the person who wishes to discontinue life-sustaining measures for a now incompetent patient. In terms of best practices, what I think is the best thing to do … The question shouldn’t be what did this person want when they were young and in the peak of health? The question should be, what’s the best way to care for this patient right now?

One important side constraint on that query of what’s the best way to care for this person right now is you never seek to hasten someone’s death because you think that their condition is a condition that’s not worthy of living, that you think that their quality of life or their incapacity to gain consciousness or something like that is … that’s never a sufficient justification in my mind to discontinue life-sustaining measures for someone. And that has to be a kind of standard consistent with what the President’s Council on Bioethics suggested in its report, Taking Care: Ethical Caregiving in an Aging Society.

Susannah Black: Yeah, I think I’m more of an integralist or more of a … I don’t know, legal authoritarian in this than you are. But I also recognize the strategy that you’re taking. I also want to refocus the way that you’ve talked about this on. … Again, I think that your massive criticism is leveled against, for example, Ronald Dworkin. There’s this horrific Ronald Dworkin quote.

People “want their deaths, if possible, to express, and in that way, vividly confirm the values they believe most important to their lives,” which, yeah, I want my death to do that, but it’s also, given that it’s Ronald Dworkin, given that it’s going to be the legal and sociological framework for the way that boomers are going to think about their own deaths, it raises this specter of a bunch of people essentially designing their deaths as die-ins or experiential self-care focused art pieces complete with “Imagine” playing.

O. Carter Snead: That’s not a hypothetical. I mean, that’s happening. There are articles about this in San Francisco where people have these events where they take the barbiturates to end their lives at the end of some kind of event where people do whatever they do to honor that person’s self-understanding.

Susannah Black: Yeah. The reason that that seems to me to be horrifying is because death strikes me as the last moment where you are able to not be the god of your own life and not be the art director of your own life, but actually be a vulnerable subject and ask for help both from other people and possibly from God. And that asking for help from other people is the default or thing that we ought to be focusing on. The Council on Bioethics has this quote that you have towards the end of the chapter.

“ [The healthcare proxy approach] emphasizes less the importance of self-determination and correspondingly more the importance of solidarity and interdependence. It invites us to move towards our final days and years not in a spirit that isolates our free decisions from the networks of those who love and care for us, but instead in a spirit that entrusts our dying to those who have supported us in our living. It enlists them to stay by our side to the very end.”

I feel like opening yourself up as you think about dying to those who love you and opening yourself up as you think about dying to God are parallel for me. I don’t know if that’s something that you’ve contemplated.

O. Carter Snead: Very nicely said. Absolutely. I agree with that. Let me say also that the dark side, and Carl Schneider of University of Michigan Law School has pointed [out], the dark side of an over-emphasis on autonomy, the flip side of patient autonomy is patient loneliness. You talk about how people want their loved ones to care for them and stay with them as they’re dying. If the paradigm is the assertion of the unencumbered will, then as a loved one, why would you stick around?

I mean, if what this is about is the individual’s final assertion, the final existential assertion of his or her unencumbered self, that’s a solitary act. That’s not something that involves others.

Susannah Black: The doctor is going to take that instruction and go with it. Yeah.

O. Carter Snead: Yeah, exactly. So acknowledging vulnerability, acknowledging interdependence is something that the emphasis on autonomy and expressive individualism can’t abide, and that’s why it has to be moderated, it has to be rooted out basically from the foundations of the law, it seems to me.

IV: O. Carter Snead: Assisted Reproduction and the Gift of Children

Susannah Black: Yep. So let’s turn back a little bit. I’d like to talk a little bit about assisted reproduction. One of the things that I’ve noticed about the way that this is talked about among Christians is obviously conservative Christians tend to be very, very strongly and universally against abortion, and there’s a much, much less strong cry, outcry against things like IVF and other things like – Well, we can talk about birth control, but certainly evangelicals often have no problem with the birth control pill even though one of its modes of activity is abortifacient.

But IVF is something that’s extremely popular among evangelicals, from what I can tell. That leads me to think that the reasons that Christians have often for being anti-abortion – it’s not that they shouldn’t be anti-abortion – they should, but their reasons are fundamentally liberal in the sense that often I think they think, “We shouldn’t aggress against the fetus.” There’s a non-aggression principle as opposed to thinking about a deeper anthropological understanding of what humans are and what parents and children are, because if there were that deeper understanding, I think there would be a more resounding evangelical rejection of IVF. Is that something that you’ve noticed?

O. Carter Snead: Yeah. I haven’t thought much about what you said about the impulses and where the folks are coming from. I’m Catholic and so I’m a little bit nervous to talk about what evangelicals think or what they don’t think. I mean, I have wonderful evangelical friends and they’re extraordinary people. I’ll just speak generally about it. I’ll just stick to Catholics, and what you run into with Catholics sometimes is, well, if you can make sure that no embryos are destroyed, we can do IVF. We do believe that human beings are entitled to moral respect and full personhood from conception onwards.

Isn’t the problem with IVF the use and destruction of embryos? What the church says in response to that is, no, that’s not the full problem with it. The problem with it is that in fact is a kind of distortion of what it means to be a parent and what it means to conceive and to have children, that it interposes rational mastery in a way that threatens to transform the process of one of procreation where the new life supervenes on the loving act of husband and wife into a drive for manufacture of a human being. That fractures the unitive and procreative dimensions of the conjugal act and ends up imposing biotechnology in a place where it has no business.

It’s not even a cure for infertility. It’s a circumvention of it and the pathologies that are responsible for infertility are not addressed. In fact, all you’re doing is working around it by conceiving a human being outside of the body with the aid of technology and then transferring her to her mom’s uterus or to a gestational surrogate’s uterus or whatever. I mean, by fracturing all the integrated parts of human procreation, we risk a lot of things.

Gil Meilaender, who himself is of course not Catholic, he’s an amazing Lutheran Christian ethicist, talks about thinking about, well, it matters how children come into the world. You can’t stand in equal relation to someone who you’ve made. Children are begotten, they’re not made. I mean, forget the fact that it’s a giant money-making industry that in some ways exploits very vulnerable people. It involves things like sex selection and trait selection and all sorts of pre-implantation genetic diagnosis, this whole array of human choice and rational mastery being interposed into a situation where what a child fundamentally is, what being a parent finally is is to accept and love a child as a gift unconditionally.

Leon Kass said a child is a mysterious stranger that you welcome and you love unconditionally, and we should measure our success or failure at becoming parents against the standard of how well are we doing in terms of promoting the concept and promoting the practice and the embrace of the reality that a child is a gift who is meant to be loved and welcomed into the world unconditionally. And if we’re doing things, or if the law is facilitating things, that are antithetical to that truth about what a child is and what it means to be a parent, then we have some work to do and we need to fix the law in order to bring it into alignment with that.

Susannah Black: Yeah. There are a bunch of people who I know who get very freaked out by the idea of CRISPR babies, babies who are genetically enhanced or whatever or whose genes are altered. Are they going to be fully human? I know a bunch of people who have extremely science fictiony and weird takes towards that. It seems to me that these are people, these are human people made in God’s image who he loves and for whom Christ died. The problem isn’t them.

The problem is in the way that their progenitors or their makers are going to start thinking about them, because it will be potentially be harder to recognize the fundamental mystery that they are because they’re human beings if you think that you understand that mystery because you think that you know everything that went into making them.

O. Carter Snead: When you assume the role of creator, it’s hard not to think of the thing that you created as your creature, something that you made and that you made in whatever image you made it in. And this is not meant as a criticism of other people, this is meant as a general call to self-reflection that includes me and everybody else, is that we need to ask ourselves what it is about an impulse to do whatever it takes to have a child that is the child of your flesh. Where does that come from?

I mean, what’s the drive there when there is a world of children who need to be adopted, who need homes? And we understand, especially as Christians, that adoption is essential to our story of who we are as Christians. We weren’t the chosen people, right? I mean, we’ve been placed in the position, as Saint Paul says, of sonship and daughtership despite the fact that we’re not entitled to it by lineage.

So I would just take this opportunity to ask yourself, why is it you want to be a parent? Do you want to be a parent because you want to recreate yourself in some way? Or do you want to be a parent because you want to practice self-emptying love for a person who needs a family, who needs a place of belonging, whether that’s a biological child or a child by adoption?

Susannah Black: Yeah. It seems like that might be a good place to end because you’ve gotten right around again to the idea of the fundamental reality of who we are, both adopted and natural children and parents and friends and just who we are in general. We’re gifts and we’re givers and we’re in relationship to each other as people who both give and receive and we are members of this human family. Again, I would just urge all of our listeners to grab and read Dr. Snead’s book, What It Means to Be Human: The Case for the Body in Public Bioethics. Thank you so much for coming on the podcast.

O. Carter Snead: No, it’s my great pleasure. Thank you for Plough, a wonderful gift. I enjoy reading it all the time.

Susannah Black: Thanks for listening. Be sure to subscribe on iTunes or your app of choice and rate us as well. Tune in next week for a conversation with acclaimed bioethicist Rosemarie Garland-Thomson, and with Leah Libresco, a dear friend and in fact contributing editor of Plough.