PloughCast 19: On Ability and Disability, Personhood and Motherhood

About This Episode

Peter and Susannah discuss Peter’s lead editorial, describing his friendship with and care for a profoundly disabled young man. They consider the simultaneous truths of the good of health, the resurrection of the body, and the full image of God in the bodies and lives of disabled people.

They discuss the phenomenon of the “ugly laws” of the 19th and 20th centuries, the Nazi eugenics program, the limitations of communitarianism, and the way that questions of disability touch on everybody, because they are about what it means to be a human in a body.

Then they welcome Plough contributor Victoria Reynolds Farmer, a writer with cerebral palsy who discusses her Marian devotion, her recent Catholic conversion, and what that has meant for her marriage and the prospect of motherhood.

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

Recommended Reading

• Victoria Reynolds Farmer, “Mary’s Song”
• Victoria Reynolds Farmer, “The Effort in the Image”
• Peter Mommsen, “Made Perfect”

Transcript

I. Made Perfect: The Teacher who Never Spoke

Peter Mommsen: Welcome back to The PloughCast. This is episode one of the series covering the latest issue of Plough, Made Perfect, on ability and disability. I’m Peter Mommsen, editor-in-chief of Plough.

Susannah Black: And I’m Susannah Black, senior editor at Plough Quarterly. This is the episode where we kick it all off. We’ll be talking about Pete’s lead editorial, and then we’ll be welcoming Plough author Victoria Reynolds Farmer, to talk about her piece “Mary’s Song,” covering disability and motherhood. Pete, this is, I think, one of your juiciest and best editorials, I would say. Good job. There are so many rabbit trails here that I am tempted to follow.

Peter: This is a real case of overnight writing that just got really fun, but it was an issue that, because of the story I told at the end of it, about my late friend, Duane, one that was pretty close to my heart, and one I’ve been thinking about for twenty-five years or so.

Susannah: Duane’s story actually was essentially my introduction to both the world of the Bruderhof and the world of Plough Quarterly, because Maureen, one of our coworkers here, Duane was her brother. She wrote a piece about his life and death, which was, I think, the first big piece that I edited for Plough.

Peter: Right, “The Teacher Who Never Spoke,” one of my favorite pieces that we’ve ever published. Duane, to tell everyone who he was, was a man with a profound disability. He never spoke, never walked, never talked, required 24/7 care, and yet had an enormous impact on many in my community, in Maureen’s family, and on dozens of young men, one of whom was myself, who had the privilege of caring for him.

Susannah: Yeah. I feel as though Duane’s story is a kind of window into both the specific issues that we get into in this issue of the magazine and also into what it means to be human beings in community and Christians who are seeking to live out our faith in the most practical possible ways. Because Duane’s story doesn’t allow you to flinch at anything that has to do with what we’re called to do as Christians and what we’re called to do as human beings. There’s no way that you can look at Duane and see his life as a meritocratic success, and there’s no way that you can look at Duane and see his life as anything other than deeply valued by God.

Peter: Now, that’s exactly it. To me, getting to know Duane – and just to be a little autobiographical here, I got to know Duane when I was twenty-five years old; he was twenty-one. I had finished college, three, four years earlier and then eventually become a member of the Bruderhof, and then fallen flat on my face in a bunch of ways and was looking for an opportunity to restart, regroup, also find my faith again.

One of the pastors in our community suggested, hey, Duane is twenty-one, his brothers and sisters have recently grown up and left home and they could really use somebody to be an older brother and caregiver for Duane, which I then did for like five months, I think. Roomed next door to him and spent all day, every day with him, and it was one of the most transformative times of my life.

Because like many people, as I mentioned in the editorial, I really had done all I could to avoid people with profound disabilities before. It was anything but something that I felt to be my calling or something that I was good at. Duane really did school me because I found very fast that being a super-good caregiver was not what mattered to him. I did my best and I got really good coaching from his doctor and a nursing team, because I hadn’t had any experience doing that kind of thing – some nursing for older people before, but nothing like this.

What he fundamentally wanted was a peer, a buddy, a friend. Although he never obviously articulated that in words, over time we really did get to know each other and did get to be good friends. It totally exploded a whole way of thinking that I’d been pretty deeply indoctrinated in by my college and striving high school years where I measured myself and other people in terms of various kinds of achievement and success.

He made me look at what it means to be human in a whole different way, and I think a much truer way. Whether you want to use, in secular terms, the language of human dignity or in Christian and, I would say, truer terms, the image of God in every human being, Duane is the person I largely have to credit for opening my eyes to that. I was really grateful to him and I was really excited about the chance to write about him.

Susannah: This is one of these issues where I feel like we need to keep two truths in our mind at once and both are completely true. Neither is partly true. One is that health is good and that being able to do things is good. Living free from pain is good. These are all good things. At the same time, there’s also the fact that the God we worship became a human being, who was someone who was … in Isaiah, one of the prophecies talks about him being so disfigured that we turn our faces away from him, and on the cross he was, and in his resurrected body, he retains those wounds.

Those are two things that we need to completely have in mind. Neither of them is partly true, they’re both completely true. It seems to me that people like Duane, people from whom we’re tempted to turn our eyes away because they make us uncomfortable, because they show us our own weakness, because they make demands on us by their very existence, we see the image of Christ in them in a very particular way, in a very powerful way. I wonder, how in your life have you wrestled through that tension between those two truths?

II. Made Perfect: The Ugly Laws

Peter: Well, I certainly don’t claim any special insights here, but I start off the editorial, actually, with a bit of US history, which I found both horrifying and fascinating. I happened onto it through an article by Susan Mary Schweik, who then also I’ve discovered, wrote a whole book on the “Ugly Laws.” This was a horrific spate of municipal ordinances in the US, primarily in the Midwest and the West Coast, but also they were proposed in New York City, although they were never passed, which essentially banned, criminalized, people with visible disabilities from appearing in public spaces.

It is, in a way, an oddity of US history, although these laws have their analogues in other cultures, but for instance, San Francisco was the first one to pass it in 1867, banned any person, I quote, “who was diseased, maimed, mutilated or deformed in [any] way, so as to be an unsightly or disgusting object, to expose himself to public view.”

You just mentioned Isaiah’s words, which Christians interpret as referring to Jesus, about how he was “despised and rejected, a man of sorrows, acquainted with grief. We hid ourselves from him; we esteemed him not.” There’s something deeply anti-human in the thinking that went behind these “ugly laws.” The last one was only repealed in 1974, although they were spottily enforced.

There’s something also deeply anti-Christian in those ugly laws, and yet they correspond to something that is a pretty common human reaction. That got me thinking, what is it about the sight of people who have disabilities, who have impairments, that makes people so uncomfortable that they would go to the extent of banning them from public space?

Of course, there’s this long history, as disability justice advocates have pointed out, going back to the ancient world, where infants with disabilities were liable to be exposed, a practice that actually was only fully ended when Christianity became the dominant religion in the Roman empire, up until, most infamously, the Nazis campaign, the Aktion T4 campaign of extermination against people with mental and physical disabilities. All of them with the same impulse: that we need to clear away, we need to push aside, we need to get out of here, either by killing or by marginalizing or by institutionalizing people who make us feel uncomfortable. In the words of the ugly law, again, “an unsightly or disgusting object.” There’s this aesthetic language there.

You were asking, well, how does that play in with our natural desire for health, for strength, the wish of most parents, for their kids, that they do grow up to flourish in body and in mind. I can’t unravel that, but I do think we have to be able to bear in mind, and this is in Christian terms, both the Christ who suffered, who was deformed, who was disfigured and the Christ who rose again in glory.

I was recently in Rome again, and had a chance to spend more time in the Sistine Chapel, which of course is almost a visual cliché because you’ve seen all of it a million times before, and it is, of course, almost then quite something different to see it in person.

You look at the Adam, this perfect human male being called to life by God, out of the Earth. And you look at the last judgment where all the saints bear the signs of their disfigurement, of their torture. They haven’t lost them, but they bear them in hand. Bartholomew has his skin on, but he still has this skin that was taken from him, and he holds the knife with which he was flayed in his hand. And Christ himself, of course, has the stigmata, the wounds.

Although I think it’s a mystery, the gospel promises both, that original Adam will be restored to a perfection, and yet, and here I think of Duane, in the world to come, in a way that we don’t know, but which Michelangelo somehow intuited, our disabilities, our impairments, our wounds will be glorified with us. Maybe that’s all we’re meant to know.

There is, I think, in today’s culture – and I’d get into this in writing – but there’s also, in the same way that there’s a despisal of disability and of impairment, there’s also, on the other side, almost a despisal of the old values of health and of being all you can be in the right sense, which is to use your talents, and what’s been given to you, to be your full self as God may have had in mind for you. I think, as Christians, for sure, we shouldn’t set those two things against each other.

Susannah: Yeah. The other thing that I feel like is a tension here, that again, this particular issue, I think shoves right in our face and should be a tension is, we’re communitarians here. We talk a lot about the bad of individualism, and we talk a lot about how we as persons really only become ourselves as we’re caught up into the life of a community, and that’s true, isolation is something that is grinding and does prevent us, in some way, from becoming ourselves.

At the same time, there’s two things to say. One of them is that although individualism is bad, the individual human person is still the site of the image of God. The phrase that’s used in these ugly laws is “public hygiene.” Obviously the idea of the Nazis was that you have to cut out some people from the body politic because they are like a cancer. The body politic is the real locus of value and individual people don’t have value of their own, they might be pure sources of sickness, and the right thing to do is to cut them out.

Christianity has no truck with that whatsoever, even communitarian Christianity. I think that looking straight at that tension is something that I think helps us dig deeper into the mystery of who we are as persons and what it means to be the body of Christ. Jesus doesn’t let us think of ourselves as individuals in the contemporary sense, and he doesn’t let us think of ourselves as disposable. Neither of those is acceptable.

Peter: It all comes down to this idea of the image of God and the way that profoundly unsettles a whole bunch of categories that people – on both the right and left sides of the way these issues get played out politically – are all too comfortable with. If being made in the image of God is what it means to be human, you don’t get to cut any human being out of it, you don’t get to rank who’s more human than other humans. You also don’t get to make gradations on whose life is worth living and whose life isn’t worth living.

Yet, if you look around us right now, and this is one of the things that prompted us to do this issue, Susannah, there’s so many phenomena where exactly that’s what’s being done. Two examples – and they’re culture war-y, but they’re really happening, and they need to be talked about – are disability selective abortion: the fact that, for instance, a few years ago, a country like Iceland could proudly proclaim that it was free of Down syndrome. In other words, that they had so successfully rolled out a prenatal screening program, and there was such wide societal acceptance of abortion for children with Down syndrome, that you effectively have eliminated all children with Down syndrome before they are born.

This was celebrated in some circles in this weird way, as if it was Albert Schweitzer having conquered a disease rather than the very successful elimination of a whole class of people. In a way that’s at war with all our society’s equally fervent professions of disability rights, enshrined in the 2007 United Nations Convention. In the UK, there’s a very strong provision in the Equality Act that even makes verbal harassment of those with disabilities a hate crime. The US, of course, has the ADA, Americans With Disabilities Act.

You have that on one hand, and on the other hand, just deeds, patterns of action – and Iceland, of course is only the most extreme case – that are completely non-reconcilable with that. Then the discussion around assisted dying and euthanasia. Peter Singer is the Princeton utilitarian philosopher who has argued, for instance, that infants with severe disabilities should be euthanized or their parents should be able to euthanize them. He was an outlier when he first made that argument back in 1979 in his book, and now, that’s the law of the land in the Netherlands and Belgium, and there’s people pushing that stuff here.

Those are real rankings of human beings – whose lives are worth living and not worth being? And just to state the obvious here, if parents are making this decision for their infant, the autonomy argument doesn’t even enter into it, this is a violent action being taken without the consent of the person whose life is being ended.

How do we reconcile this? There’s these glaring contradictions that really need to be looked at. That’s, I think, where the Christian teaching of the image of God, or if you want to take the secular analogue, the teaching of the inviolability of human dignity, that’s something that we should all be talking about and thinking about a lot more.

It’s not just about this niche group of people who have disabilities or have disabilities in their families or disability advocates, as some might think. The more I got into this issue and you and I talked about it, as we put it together, the more I realized this is just fundamentally about what it means being human beings with bodies, with abilities and disabilities, because all of us have those to various degrees.

Susannah: There’s so many parts of this that just does not allow you to flinch away from the most interesting questions. When you first brought up the possibility of doing this issue, I kind of thought like, that’s kind of niche. Yeah, I guess the Bruderhof have this Rifton Equipment business, which makes gait trainers and other kinds of equipment for kids with physical disabilities, to help them participate more fully in their friend group and life. It’s something that, yeah, I can see why the Bruderhof cares about this. But still, the whole issue on disability?

And the more we got into this, the more I realized, first of all, the idea that the disabled are this small fraction of the human race is completely bizarre. One of the things that being around the Bruderhof makes you realize, I remember thinking about this over our writer’s weekend, is that the fraction of the human race that is between the ages of eighteen and sixty-five and fully able-bodied, that’s maybe a third of people, half of people. Everyone at one point in our lives …

Peter: … is going to be on either side of that.

Susannah: Yeah. The idea that this is a niche thing is bizarre. And it’s also not niche because it just gets right to the central questions of what it means to be a human being, and it totally strips away any possibility of, I think even … I think the secular dignitarian account doesn’t really begin to account for what we instinctively know through our consciences and what we can reason out as we start to think about this stuff more carefully.

For example, the idea that our dignity lies in our agency and our ability to make choices and therefore assisted suicide, if you’re choosing to do it, is something that you ought to be able to choose to do, runs right up against the idea that, okay, if you are doing that, there’s no way that you doing that does not have effects on other people who are in your same physical situation.

Say you have some condition which you feel to be worthy of a death sentence on yourself, and you choose to commit suicide, to do assisted suicide. You are then requiring that everyone else who has that same condition make a case for their own life. They now no longer have that kind of claim of, I’m a human being, I may not be in perfect health, you’re not allowed to ask me to end my life. They now have to make a case for themselves.

Obviously, there are parallels in prenatal testing, like when you and Wilma were having your first child …

Peter: Right. This was back when we were having our first child, we were living in Germany and we just had our meeting with our midwife and we were part way through the pregnancy. She said, “It’s time for the Down syndrome test.” We were nervous young parents. We hadn’t really thought through pregnancy or Down syndrome or prenatal testing at all.

We asked her quite foolishly, really, okay, what if the test comes back positive? It was just one of those moments where the truth of the matter hits you, particularly at a time when you’re so excited for this first baby whose first stirrings you’re already feeling. The midwife, her eyes teared up, and it turned out she’s a devout Catholic, although we hadn’t known that, and she just explained the obvious that if there was a positive Down syndrome test, there is really only one medical procedure that would deal with it, which would be termination.

We then had to sign a waiver that we didn’t want the test. It’s a perfect example of this kind of nudging. A lot of this stuff is framed in the language of autonomy, but if you look at it, for both the assisted dying and for prenatal screening and abortion of those with chromosomal aberrations or other disabilities, there’s big studies out there by the public health bodies, definitely for the prenatal testing, but I also found some stuff pointing that direction for the assisted dying, where these big public health systems realize that there’s big savings to be made if you can nudge parents toward making decisions for death.

That is why, that is what justifies, certainly in socialized systems, the cost of the testing itself. That is why, presumably, we had to sign this waiver because the German health system really wanted us to know, and to decide that we were the kind of couple who either wanted a Down syndrome baby, if she would’ve turned out to be that, or wanted to, I guess, have made the decision not to have a test.

Having a Down syndrome child, as many have pointed out, stopped being a gift, a baby that arrived for you, and started being a choice. You affirmatively have to want to be the kind of parent who has a Down syndrome kid, which is entirely different, and, of course, one that we certainly, as new parents, a kind of decision I would never want to have to make, and no new parent is actually prepared to make that decision, you have no idea what you’re talking about.

Susannah: If you’re a parent in a society like Iceland, where this is so uncommon, you know that if you walk around with your child with Down syndrome, everyone in that society is going to be looking at you and thinking, what’s wrong with these people? Were they irresponsible? Do they not know … How dare you bring this child into our society where now... It’s basically, you feel as though you’re having to justify the existence of your child.

Peter: At a minimum, it would be awkward. Now, the one to two children per average year that apparently are born in Iceland with Down syndrome are actually the result of false negatives on the test results it seems, but that is absolutely the case, everything becomes a choice and to provide love and equal dignity, equal recognition to children and adults with disability becomes a choice that society makes, rather than something they’re owed by virtue of who they are.

Susannah: Yeah. This obviously impacts the way that we think about ourselves as well, because if it is not the case that our lives are gifts and that we don’t have the right to kill ourselves any more than we have the right to kill someone else, if that’s not the case, then every day that we choose not to commit suicide, we better have a good reason for that.

There’s a perpetual requirement of having a utilitarianly good experience of your life in order to justify not killing yourself in this kind of psychological mode. It’s not a question of depression, it’s not a question of feeling suicidal, it’s a question of, philosophically, suicide is almost the default under these kind of social and psychological conditions. If you’re not going to do that, if going to choose every day to not kill yourself, it better be because you’re having positive affective experiences. It better be because you’re being all that you can be.

There’s this perpetual need to run away from negative experience, need to deny pain, need to prove the worthwhileness of your life at every point in order to make the case to yourself and to the rest of society that you’re not one of the ones where today is your day to go under the gun.

This seems to me to be the most profound locus of de-Christianization right now. The way that we think about assisted dying seems to me to be … right now, it’s still thought to be, at least by most people, especially by most people who are boomer generation, it’s still thought to be not normal to just off yourself at the end of your life in a way that you choose and probably has some nice music playing. It’s assumed that it’s okay to just, when it’s your time to go, you’ll die. That’s all right. I’m not sure that that’s going to be the case for future generations. I think that the idea of natural death might end up being one of these niche hippie things.

Peter: Yeah. Almost like anti-vaxxers …

Susannah: Yeah, it’s like crunchy granola. Oh, you’re just going to let yourself die? You’re going to just let it happen?

Peter: How gross is that?

Susannah: Yeah.

Peter: It comes down, so much of it, to these kind of aesthetic arguments. You see that, for instance, there was recently some media around these Sarco capsules that some horrific Dutch company has built, 3D printed sarcophagus that you can put yourself in and extinguish your life basically by appointment and it’s legal in Switzerland to use these things.

The goal of the CEO of the company, the founder of the company that makes these, is essentially to allow people, without going through the medical system at all, without seeing a psychiatrist or even having to ask for the drugs that are currently usual, to just make an appointment to exit.

Susannah: Have it be fully their own decision, fully autonomously their own decision.

Peter: But also a very easy decision, a decision that you could imagine somebody building an Uber-like app to arrange. You could imagine funeral services teaming up with it, for there being a seamless experience that you could just log in and have the whole thing delivered to your house, and you could pick your Spotify playlist. This is the sort of sense you get from the interview with the guy. This is the way of death [that] is being proposed to us.

But as you point out, it’s also a way of life that’s being proposed to us. One in which anything that either doesn’t help me, in terms of careerist way, or in terms of an Instagram-friendly lifestyle, somehow makes my life not worth living and radically devalues all human beings in the process.

That’s what really got me going with this, because you couldn’t imagine anything that’s more in tension with the fundamental idea that Jesus Christ became a human being, took on human flesh, that God chose to become a man to become vulnerable. If you think of the great mysteries of the Christian faith that we recite in the Creed, this whole way of thinking, you can’t imagine a more fundamental attack on them. It’s not just a matter of these culture war issues of abortion and euthanasia, but also a whole catechesis, and a whole absolutely false anti-human way of approaching the whole rest of your life.

Susannah: The existence of that company teaches people something false about being human, about what it means to be human. I think, from what he said, the owner of this company, his ideal was that you wouldn’t even need to interact with a psychiatrist at all. You would fill out a form on a website and an artificial intelligence would evaluate whether or not you are of sound mind enough to make the decision to off yourself.

There’s something thoroughly desacralized about your own perception of yourself, and that’s combined, in an inevitable way, with a complete isolation. What Christianity offers in the face of that is a sense of each of our lives as something we’re given in trust. We didn’t make ourselves; we couldn’t have earned ourselves. We hold ourselves as people who will have to give an account of what we’ve done with ourselves to God, because ultimately we’re not our own and we’re his.

Because we’re his, we’re a lot stranger and a lot more mysterious and fundamentally aimed at holiness in a way that just is not compatible at all with the widget-like idea of humanity, that those Sarco death pods imply.

Peter: How do you like my Socrates quote? Had you ever run into that before?

Susannah: I did not, but I liked your nerdy gym bro reference as well. The Socrates quote was, “No one has a right to be an amateur in physical training. It is a shame for a man to grow old without seeing the strength and beauty of which his body is capable.”

Peter: It actually led me back. I’ve seen this quote in gyms, and obviously, it’s inspiring you to your ultimate body- building self, to some degree. I jumped back and it actually is from Xenophon, this great dialogue which I had never read. It’s with Socrates but a bit of a different Socrates than Plato’s Socrates. He’s just chewing out this young man for just allowing himself to become flabby and saying … Of course, Socrates’ reasons start out in the dialogue, with the duty of this young man to be such a person as would be helpful in the common defense of the city-state.

But then he does get down to also just, hey, as a human being, you owe it to yourself to be your best self. Now, you can almost roll your eyes at meritocratic Socrates sounding like some type of life coach –

Susannah: Jordan Peterson. Oh, come on.

Peter: Yet in the context of the dialogue it’s something that you can absolutely affirm, this is actually true. In raising my kids, I absolutely want them to push themselves to do all the things they can do. I don’t know if we’re going to reach the grand synthesis here, but there is this way, and this is what I was thinking about and trying to think through, in terms of writing about Duane, there’s a way that those two things aren’t actually in conflict.

Susannah: I’m seeing that. I did not realize that until you repeated the quote.

Peter: My grandfather used to always tell this story about my great-grandfather, Eberhard Arnold, the guy who founded the community, who was a huge fan of an essay by Johann Fichte on “The Vocation of Man” [Die Bestimmung des Menschen, 1800]. In fact, he read this entire essay to one of his sons on the son’s eleven-year-old birthday as an inspiration to him.

It’s this romantic call to realize you are full of human potential. I think that stuff is great, and I think there is a lot of today’s culture, actually, that wars against it, that pushes people to a lukewarm, over- easy self-acceptance, that can sound very tolerant, that can sound accepting, but actually in its own way, devalues all the potential that God has put into humanity. Yet, that can’t slip into a valuing of people based on how far toward Socrates’ ideal …

Susannah: How swole they are.

Peter: Yep.

Susannah: When you got me to reread that quote, as I was reading it, I was seeing how it was a fusion. Because what Xenophon’s Socrates says there is that we don’t have the right to neglect ourselves. Just as much as we don’t have the right to kill ourselves and take ourselves out of action. That’s killing yourself, going MIA from the defense of Athens.

At the same time, we also don’t have the right to neglect our health. And so it actually ends up revaluing the human being, because again, we’re saying like, it’s not up to you, whether or not you stay alive is not up to you. Whether or not you seek your own actual, real good, your actual eudaemonia, that’s not up to you. You’ve got to do that, because seeking your own eudaemonia is fundamentally seeking Jesus, and it’s fundamentally seeking to live in love with other people.

Those are not optional extras for life. We have our marching orders and part of our marching orders is to stay alive. Part of our marching orders is to treat ourselves with a certain kind of respect. Part of our marching orders is even to use the talents that God’s given us. Obviously, the parable of the talents, the way that we use the word talent is adopted from that. Part of our marching orders is to not abandon the community that God’s put us in.

That does seem to me to be something that is this almost reappropriation of those pre-Christian ideas of virtue, back into something that’s more holistic and more truly Christian. To be honest, I’m deeply obsessed with this idea of the bastardized version of natural law that people on Twitter talk about called gnon, G-N-O-N. It’s essentially natural law as in the survival of the fittest or natural law as in, get swole and be healthy.

Peter: This whole Bronze Age …

Susannah: Yeah, our Twitter frog avi people who are very into this, and it’s extremely wrong. This is not natural law that’s understood in Christian teaching, but there’s also something that’s not totally misguided about it, because it does have the sense of human excellence and strength as goods. I think it’s only in the context of the religion of Jesus that those things can be recognized as goods without becoming poisoned, and without it starting to be implied that people who haven’t achieved those things ought to be eliminated from the body politic.

I think what it comes down to is the fact that Christianity is a religion of hope. You end your essay with the idea of our lives being full of promise. Before the New Jerusalem, before we see God face-to-face in Heaven, we are only living on promises. None of us are as healthy, as well as we could be, either physically or spiritually or morally.

Peter: Then, even if we were, we all know how temporary that is.

Susannah: Yeah. All the goods that we have, even our … this is Saint Paul, this is Saint Augustine, all the goods that we have, even all the goods that we’ve been able to bring out of ourselves through application or through training or whatever, the very self-discipline that allows us to do that is also a gift. There’s nothing that we have that’s not a gift. We all exist as terminal cases, we’re all going to die. But receiving each day of life as a gift, with whatever quality of life is given to us in that day is something that is … it’s the unity of duty and joy, we have to do it, it’s our duty, but it’s only because it’s a duty that we can, I think, fully enjoy our lives as well.

III. Victoria Reynolds Farmer: Disability and the Christian Life

Susannah: Now we are at the part of this podcast where we get to welcome a guest, a Plough fellow traveler. Victoria Reynolds Farmer has a doctorate in English and gender studies from Florida State University. She currently works for a market research firm and she helps to run the Christian Feminist Podcast, which is one branch of the ever-expanding, world-dominating Christian Humanist Podcasting Network, which is, I think, where I know you from, and also from Twitter. Welcome, Victoria!

Victoria Farmer: Yes, that’s true. I am a proud member of the Christian Humanist Radio Network, and we are slowly taking over the world. It’s great.

Susannah: You’ve written for us before, and I think we had reached out to you to write this piece pretty early on. This was one of the first pieces that we talked about actually for this issue. Do you want to just describe the piece and the whole process that you went through in writing it?

Victoria: Sure. First, I would just like to say, thank you so much for asking me to contribute to this special issue. I feel like a lot of disability stories don’t get to be told by disabled people themselves. There’s a lot of framing around parents of children with disabilities and communal relationships, both of which are valuable, important things, and I think we’ll probably talk about interrelatedness and community later. But because I think disabled people don’t get a lot of opportunities to tell our own stories in our own voices, I was really honored that you guys reached out to me for this issue. So, thanks for that.

But the piece, it’s a lot of things, I guess. It is my attempt to reconcile my conversion to Catholicism and my desire to live out a more embodied theology with some struggles I’ve had surrounding my inability to have children as a disabled woman, which is a really complex situation. Even though I really wanted to write this piece, I didn’t want to write this piece at all. I was really terrified to put something so scary and sorrowful and grief-filled out into the public. But because your team and your editors were so supportive of my previous piece, which was also very personal and scary, I felt like this was the right place for me to do that. I wrote about those embodied theology experiences and decided to frame the piece around the phrases of the Hail Mary, because that prayer and the way I use it to connect to the people around me has been a really important part of my journey into Catholicism.

Susannah: You talked a little bit about the first time that you prayed to Mary or that you asked for Mary’s intercession. Do you want to tell that story?

Victoria: I love this story. I am apparently the only person who remembers that this happened. I asked my family about it and they do remember the musical. I was the Christmas star in my Baptist Church’s nativity play when I was six. I had my first ever solo, where I wasn’t just part of the choir, I was actually singing a few phrases by myself. Because it was the first time I’d ever done that, I was nervous.

My mom told me not to be nervous, because if you try your best and you trust God’s plan, things work out okay. When she said that to me, my brain flashed to the Sunday school lessons that we just had about Mary. I don’t think I thought of myself as praying to her at the time, because I didn’t know, as a very Baptist small child, that that was a thing that people could do. But certainly, now, looking back, I do think what I was doing was praying to Mary, and I asked her to help me be brave and tell people about Jesus. Everything worked out, and I didn’t forget any of my lines.

Peter: Well, the way that piece came together is just so beautiful. What was amazing to me is how you tell the story, it gradually unfolds with each new phrase in the Hail Mary prayer, in a way that, I hope many readers will, right now, click through to – we’ll put the link in the notes for this episode., it’s so important, as you were saying at the beginning, the voices of those who live with disability are often not heard.

For me, getting a chance to read this piece when it first came in, there were so many things I learned and understood for the first time about the story you told coming to the end. I would love to hear just what are some of the things that you hope that people coming new to disability, who maybe haven’t thought about it a lot before, what are some of the things that you hope they would walk away from this piece with?

Victoria: I would hope that people who aren’t familiar with the way disabled people experience the world would broaden the voices that they listened to. Do you follow disabled activists on social media? Do you seek out pop culture that contains disability representation? If you count invisible and mental disabilities and physical disabilities, 20 percent of the US population is disabled in one way or another. That’s a huge chunk of people, and I don’t think that representation happens culturally or pop culturally. Seek out those voices, and secondly, and I think related to that point, when they tell you how they experience the world, believe them.

Susannah: Part of your piece was describing your own experience with disability, both as a child and as a young woman. Can you just let our readers know what that is? What is the place that you’re speaking from?

Victoria Farmer: I have spastic diplegic cerebral palsy, which is a lot of large words. That means there is damage to the part of my brain that controls muscle strength and tightness. Essentially, in layman’s terms, the muscles that control my legs are programmed backwards. They are tighter than they’re supposed to be, and the synapses don’t exactly work right.

What that means practically is that I walk within an awkward gait and my hips overrotate. Cerebral palsy is a really common, catchall diagnosis. Some people have muscles that are too tight, and some people that have the other kind that I don’t have, have muscles that are too loose. You may have also seen people like that, but it is a very common diagnosis, and my case is milder than a lot of people’s. But that’s my specific experience. I should say, of course disability is not a monolith, cerebral palsy is not a monolith, these are my experiences.

Susannah: You also describe, in your piece, the way that encountering especially some of the stories of some of the women in the Bible, and in particular Mary’s visitation to Elizabeth, was something that helped you towards a more embodied understanding of your faith, and essentially a greater peace at being inside your own skin. I’m really interested to know how Catholicism, in particular, has interacted with that, because, obviously, one of the things that people say about it’s a more physical kind of Christianity, it’s an embodied faith.

Victoria: I was supposed to be confirmed Easter 2020, but everyone knows what happened. My confirmation was delayed until the fall, but I’ll get to that. Growing up Southern Baptist, and this is not a criticism of my particular church or community who really loved me very, very well, and tried to create an environment in which I could do everything that all the other kids could do, and was very supported and listened to and cared for.

But generally, in my experience of low church Protestantism, there can be a drift toward a kind of Gnosticism, in which the soul is so elevated that the body is considered lesser or unimportant in a way that for me, as a disabled person, felt like my physical self and my spiritual self could not coexist. But because I am someone for whom it’s really difficult to hide the physical effort with which I move through the world, I had a problem with that separation. I am never not aware of my physical body. So, the idea that I would step inside my church that was supposed to be the safest, most accepting place and have to not recognize or not think about my physicality in that space, or think about it as purposefully subordinate, when it’s such an always-present part of my life was difficult for me.

One of the things that drew me to Catholicism is how much the sacraments are grounded in physicality and how much Christ as incarnational is really, really emphasized. That taught me that not only is there room for both the spiritual and the physical, but that the spiritual and the physical need to be relational and equally holy, and that was a really liberating thing for me.

IV. Victoria Farmer: The Visitation and the Culture of Life

Susannah: Can you talk about the parts of scripture that spoke to you as you were going through this discovery or this recalibration?

Victoria: Yes. I mentioned in the piece that growing up, I was always looking for female representations of how to be a Christian in the world. I would read Bible stories over and over of women whose faith would be tested. I really liked the bleeding woman in Matthew 9, because that’s someone who, her body is supposed to separate her from society, and she doesn’t agree with that, and she touches the hem of Jesus’ garment, anyway, and then her faith is rewarded.

But for me, I was always really drawn to the Visitation, the relationship between Mary and Elizabeth, because … Well, at first it was just because it seemed like this really emotionally rich relationship between two women, and there aren’t a lot of those that are really fleshed out in the Bible. So that’s something that really spoke to me as a young girl and still speaks to me as an adult.

But then when I started thinking about that passage more, I realized it’s not just that they’re sharing emotional experiences, though they are, and it’s great that that’s validated in that passage. They’re also sharing a very particular embodied experience because they’re both dealing with this miraculous pregnancy, which must be such a terrifying, isolating thing, even though it’s a miraculous, wonderful thing. It’s both/and.

The idea that these two women who are experiencing the same physical thing at once are finding solace and friendship and recognition and compassion in one another is just still incredibly powerful to me, the idea that God gives us the gift of people who experience the physical world, the way that we do, and that being known is a particularly powerful and grace-filled thing.

Susannah: One of the powerful things about the Visitation for me has to do with the fact that there are four people in this room, there are four people in that encounter. There’s Mary and Elizabeth, and then there’s John who leaps in Elizabeth’s womb because he’s so excited. Obviously, she feels it, he’s kicking. Then there’s Jesus who, [Mary’s] already his mother. Elizabeth says, “Who am I, [that] the mother of my lord should come to me?”

Mary is already his mother, even though he’s an embryo at this point. The idea that the fetus John is worshiping the embryonic Christ, it turns your brain inside out and it does not leave much room for ambiguity about the personhood of the unborn, at least, for Christians, I would think.

I wonder: obviously there are so many parts of the disability movement and the pro-life movement that intersect with each other in interesting and complicated ways. In general, the disability movement tends to be seen as on the left, for some reason, and the pro-life movement tends to be seen as on the right. I find this bizarre. Do you want to discuss how that’s played out in your life or any reflections that you have on that?

Victoria: I am a pro-life feminist. That means a lot of people think I don’t exist. As you say, that’s a very complex sociopolitical position to hold. I do think that disability is very much a pro-life issue. Peter, you touched on this in your really wonderful editorial, the idea that disability and eugenics have always historically been linked. You mentioned the “eradication” of Down syndrome in Iceland, which when that happened, literally everyone I’ve ever known sent me newspaper articles and said, “What do you think about this? What do you think about this?”

I said, “I have to take a break from the internet right now, because I can’t.” It’s very terrifying to know that there is a segment of the world that thinks your life has so little value, that it would be better for the world if you and people like you did not exist. That you take too much effort from other people. It’s just such a ghoulish mode of thought.

It’s really insidious, too. It creeps into places in culture that if you’re not looking for it, you don’t expect. There is, for example, an entire subgenre of romance literature, that the way to show that you most love a disabled person is to let them kill themselves. If you’re familiar with the Me Before You trilogy, that’s essentially the plot of those books. They’re also made into romcoms that people actually saw. Ghoulish is the only word I’ve got for it.

Susannah: I’m going to have to sit with that one for a while. That’s hideous. I wonder whether you could talk a little bit about what it seems to me is probably one of the most difficult parts of writing this piece, which is the decision you came to in the course of, as you were becoming Catholic, about having children and how … I’m also curious about how the priest that you talked about this with thought about it, and how this works with general Catholic teaching, because this is not something that you did as a cafeteria Catholic.

Victoria: Well, my husband and I had a very serious conversation about … when we were deciding to convert, we very early had these, so, what does this mean for birth control conversation? Because I was on hormonal birth control early in our marriage before we converted, at the advice of my doctors, primarily for reasons to do with very painful periods.

But after that, we looked at church teachings and we had already decided if we were going to convert, we were going to convert and we were going to recognize the teachings of the Magisterium, go all in because why do it otherwise? If you’re going to make this decision, make this decision. We spoke to our priest and told him the situation and he was very kind and talked to us about grief and said that it was clear that we weren’t entering into this situation lightly, that we had thought about it, that we were pained over it, and that it seemed like we should listen to medical advice because we’d weighed the options. He says, the church lets priests and parishes give dispensation for that.

Even though I’m glad that he said that to us, and even though I do feel that that’s the right decision for me and my marriage, as I said in the piece, I’m still grieving over it. That doesn’t mean I’m done with this decision, or done with the experience. I appreciate the fact that the communities I’m in, specifically the Christian communities I’m in, have given me space to express the maternal energy that I have, that I have to think is divinely originated, have given me an outlet for that energy.

Susannah: I’m just really moved by your ability to gradually describe this set of personal experiences and weave scripture in. Again, I just would urge everyone who’s listening or watching to read this piece. Victoria’s a writer, this is a crafted piece, and it’s a very well-crafted piece.

Peter: It’s, in many ways, the heart of this issue of Plough. Thanks so much. It’s been so great to talk with you, Victoria. I would also urge folks, if you get on our website, you can also read Victoria’s earlier piece for us, which is revelatory in a different way. It’s called “The Effort in the Image: On Seeing Cézanne’s The Large Bathers From a Rented Wheelchair.” It’s another piece that I could promise you, most of you have not read an essay like this before.

Thanks so much for this conversation, also for wanting to share these very real, quite painful topics that go to the heart of what it means to be human beings, in many ways. Thank you.

Victoria: Thanks so much for having me. I really enjoyed this conversation.

Susannah: Thanks for listening. Be sure to subscribe on iTunes or wherever you go for your podcasting consumption needs and rate us, give us five stars on iTunes, that helps us with visibility. We’ll be back next week to talk with Amy Murphy of Rehumanize International and repeat PloughCast offender, Ross Douthat.