Online Conversation | Perfectly Human: Why Understanding Disability Matters to all of us with Amy Julia Becker

The gospels are replete with stories of Christ healing those who are sick and disabled. Thousands of years later, despite our medical and social advances and a thriving wellness industry, individuals and communities are still hurting. What do those gospel stories say to us now, amidst broken relationships and hurting bodies? How can the work of Jesus bring about the personal, spiritual, and social healing we long for?

Award-winning writer and speaker Amy Julia Becker addresses these questions in her book To Be Made Well: An Invitation to Wholeness, Healing, and Hope. “This book will better equip you both for your journey in the healing process and to be an agent of healing,” says David M. Bailey, founder of Arrabon.

We hosted an Online Conversation with Amy Julia Becker on March 1 to consider how the experience of disability enhances our understanding of what it means to be human.

Thank you to Ross Little and Heidi Metcalf Little, Patricia Clarke, John and Sarah Reimers, and an anonymous sponsor for their support of this event and to our co-host Herald Press

Online Conversation | Amy Julia Becker | March 1, 2024

Cherie Harder: Thanks so much, Campbell, and welcome to all of you joining us for today’s Online Conversation with Amy Julia Becker on “Perfectly Human: Why Understanding Disability Matters to All of Us.” I’d like to also thank our co-host Herald Press, as well as our several sponsors who’ve helped make this program possible. We so appreciate your generosity and support.

And we’re delighted that so many of you are here today and want to give a special shout-out to those of you who are joining us for the very first time. We know there’s over 200 first-time registrants for today’s Online Conversation, as well as a few hundred people joining us from all over the world, from at least 25 different countries that we know of ranging from Canada—and we know there’s a big contingent of you all from Canada, so a special shout-out—and Costa Rica, to South Africa and Slovakia. So thank you for joining us from across the miles and across the time zones. If you haven’t already, let us know where you’re joining us from in that chat feature. You’ll see that people from all over the world are writing in. And it’s always fun to know where people are coming from.

If you are one of those many first-time guests or are otherwise new to the work of the Trinity Forum, we seek to provide a space for leaders to engage the big questions of life in the context of faith, and to offer programs like this conversation to do so, and ultimately to come to better know the Author of the answers. And we hope today’s program will be a small taste of that for you today.

We live in a time when our value is often assessed and affirmed largely in terms of our productivity. Entire industries are built around pushing us to optimize our output, maximize our results, unlock our potential, break barriers and records, and perform perpetually at peak. The half-hidden assumption of all of this is that we should aspire to function like a well-oiled machine, or a bug-less piece of code: unstoppable, relentless, and unfailingly effective. Drowned out by the din of such appeals is the simple truth that to be human is to be limited, vulnerable, and mortal. For many of us, such limitations are impossible to ignore. Depending on the source, there’s between 42 and 62 million disabled adults in the United States—around 15 to 20 percent of the country—who live with some sort of hearing, vision, cognitive, mobility, or independent-living challenges. 

Even those of us who may currently feel invincible know somewhere in the back of our mind that if we do not die young, we will grow old and experience the limitations and constraints that old age brings. In a race for peak productive performance, we all eventually lose. And yet the decline or loss of certain capacities need not stunt and may even spur growth in wisdom, relationship, joy, and love.

So what does it mean to be perfectly human? What might understanding disability reveal to us about the meaning of the good life? Our guest today has wrestled with such questions, both in print and in person, for nearly two decades, since the birth of her first child, her daughter Penny, who was diagnosed with Down syndrome and subsequently upended many of the expectations of her own high-achieving life and assumptions about what the good life actually is. Amy Julia Becker is an award-winning writer and speaker on disability, family, culture, and faith. A graduate of Princeton University and the Princeton Theological Seminary, she’s the author of four books, including A Good and Perfect Gift, Small Talk, White Picket Fences, and her new work, To Be Made Well: An Invitation to Wholeness, Healing, and Hope. She also serves as a guest opinion writer for a variety of national publications, including The New York Times, Christianity Today, The Atlantic, Time, and many others, and is the host of the Re-imagining the Good Life podcast.

Amy Julia, welcome. It’s great to have you here.

Cherie Harder: Cherie, thank you for having me. I’m really excited to be a part of this today.

Cherie Harder: Well, I’m looking forward to it as well. And I like to start with the story behind the story, and you certainly have a fascinating account of what led you to focus on these topics and write about this. And so I’d love to hear you say just a little bit about the birth of your daughter and how that changed the course of your own life.

Amy Julia Becker: Sure. Well, as you mentioned, our daughter Penny is now 18 years old. So this was December 30th, 2005. I went into the hospital, a couple weeks early but not in any scary way, to give birth to our first child. My husband and I were both in our late 20s and had had a very typical pregnancy experience. And when Penny was born she received an 8 out of 10 on her Apgar score. And I held her in my arms and just marveled at this tiny little body with all of her beautiful features. And then a couple hours later—Penny had been out of the room for a while—a nurse came in and asked my husband to accompany her out of the room. And when he came back, he told me that the doctor suspected that Penny had Down syndrome.

And there are two stories from that night that I think might kind of frame our experience with Penny. I was in seminary at the time. I was a student in a master’s of divinity program at Princeton Seminary. And as it happened, there was another woman—we were in a Romans class together—who also was pregnant at the same time. And as fate or something would have it, she was giving birth to a baby girl in the room next door. And after Penny’s diagnosis had come in to us, her baby was born. And the words that echoed through the walls were, “she’s perfect, she’s perfect, she’s perfect”—about this other little girl. And at that time, what I felt like I had been told about my girl, my little baby, was “she’s not perfect.” She’s disabled. She has a birth defect. She’s got lots of abnormalities. Those were the types of words that either had been said or implied.

And later on that night I was going to sleep and had been awake for almost 24 hours, obviously had gotten news I never expected to have, and a nurse came in just to say good night and check my vital signs. But as she was leaving the room, she turned back and she said, “I had a special child too.” And I said, “How old is your child now?” And she said, “He died a long time ago,” which was not what I wanted to hear. And so I said, “Oh, I’m sorry.” And she shook her head as if I didn’t understand what she was trying to tell me, and she said, “He was a gift,” and she walked out of the room, and I’ve never seen her again.

But I look back on that night, and it really feels like the movement from thinking about, not just my daughter but all of us, in terms of perfection, like conforming to an ideal, to gifts that are mysterious and limited and beautiful and filled with possibilities—it was that journey that we needed to take. From perfection to gift. From “she’s perfect” to “he was a gift.” And that all happened in the course of a couple hours in a hospital room 18 years ago.

Cherie Harder: Well, let me ask you about that journey, because you’ve written quite a bit about it, and you said that the news did basically force you to both reimagine the future but also kind of reexamine what actually matters most. What changed as a result of that reexamination?

Amy Julia Becker: There’s a lot that changed. And as you know, I’ve written a lot of pages about it. So I’ll—. To try to summarize that in any way would be to say, at first what I realized— there were two things. I didn’t actually have an imagination for our future. I didn’t know other families who had children with Down syndrome or other disabilities. I hadn’t grown up around other families in that situation, so I really had this fear of the future in a different way than I had when I was pregnant and didn’t know that our child had a disability. And then, eventually, someone gave me a coffee table book that had pictures of families with Down syndrome, and it started to kind of repopulate my imagination. And it wasn’t that I thought Penny would be exactly like this little boy who’s playing the harmonica, or this little girl who’s holding hands with her dad, you know? But it just gave me pictures of what might be. And we began to meet people. We began to meet other families and to learn, you know, [for example] that the statistical likelihood that she live longer than I thought she might had increased a lot in my lifetime. So there were some real health advances that had happened.

But there was also just this sense of being able to imagine a good life for our family and to recognize that there might be something that God really had for us in giving us Penny as she was and not seeing her as someone who was particularly broken, but actually who, yes, had more visible limits that would be more prevalent, perhaps for her entire life. And yet that were also not different in category than mine, that they were human limits and that I also had human limits.

And then the other thing that I would say happened early on is what I would call ugly grief, that I had to confront prejudices that I didn’t know that I had. I didn’t know that I carried with me a hierarchy of people in which I gave higher status to those who were intellectually kind of super-able. And for a long time, I had to grieve a hypothetical child. I grieved the loss of the child I thought I was going to be given. But what was really beautiful about that was that once I kind of recognized and received Penny as the gift that we were given, [I realized] there had never been another child. Like, I wasn’t grieving something that was real or someone who was real. And so I was able to receive her and truly have that experience of movement from grief to joy, which we don’t have when someone we love— when we lose them. In this case, I only received, but I had to go through a process of ugly grief to get there.

And then, finally, the last thing I would say, is I think I began by assuming that having a child with a disability would mean that my world became very small, because I was only connected to other people in the disability community, and I was thinking about and working on that all the time, and it was going to cut everything else off. And what I found instead was that it just opened me up. It opened my heart up to other experiences and other people, to a much wider understanding of the way that humans can be in the world and the ways in which we need each other. I think for the early years of Penny’s life, I saw myself—who I have always been in a position of relative privilege within our society—and I wanted to break down barriers so that Penny could come in and be like me. And over time, I recognized that actually, I wanted to break down barriers so that I could go out and be with her and with the other people who were where she was, because there was such a richness and a depth and a gift in that giving and receiving and really different set of values than what I had grown up thinking were what mattered most. That really changed.

Cherie Harder: I’d love to explore that a little bit more, but first I wanted to ask you: You used the word “broken” to describe— a word that was used with you to describe Penny at one point. And, you know, the subtitle of this conversation is “Why Understanding Disability Matters to All of Us.” And I want to ask you about what disability actually is. Presumably it is not brokenness, but how do we understand it? I mean, is it something that is malfunctioned, or do you see it more as vulnerability? How do you understand the term?

Amy Julia Becker: Yeah, I agree. When Penny was first born, I definitely thought disability equals brokenness. And I thought that brokenness was either sad or bad, but certainly negative. And it took a long time for me to recognize that brokenness and limitations are not the same thing. And that was the beginning of an opening to a different understanding not just of disability but actually, I think, of our humanity. Because when I started to realize that brokenness and limitations are not the same—. All of us as humans have both of those things. I really believe in our bodies, our minds, and our spirits, we certainly are not living in an ideal state. And yet the brokenness that we experience in our world is often because of sin in the world. [But] the limitations we experience are not. If we look back, again, from a position of faith, to the ideal human—whether we look back to Adam and Eve in the Bible or we look to Jesus—we see humans with limitations, who needed to sleep, who needed friendship, who needed to eat, who had needs and vulnerabilities, and that that actually is part of what makes them human.

And so to see disability in terms of brokenness is to really misunderstand, I think, this idea of human limitation, also to misunderstand ourselves as beloved, as ones who do not need—to go back to your introduction—to produce or perform in order to be acceptable to God, for certain, but even to one another. But instead to be able to actually start from a place of belovedness and move into the world from that place with our limitations, but also with an assumption that we have gifts to offer, which might look really, really different from one person to the next. And, you know, we live in a culture in which the gift of being able to get on a screen and speak in a very clear way is highly valued. And there are other things that really aren’t. And yet I don’t believe those are the right measures.

And so, yeah, for me, disability is a pretty natural part of the human condition. As you mentioned, we will all, if we grow old, experience disability in some capacity. And even for those of us who won’t experience that, one of the things that I’ve come to believe is that disability is like a magnifying glass that helps us to see more clearly the human condition, that we are vulnerable, limited, broken—all words you’ve used—but also beautiful, blessed, and beloved. 

Cherie Harder: That’s great. And, actually, I want to ask you more about the words that you just mentioned—in that you’re a writer, you take words very seriously. Just in the course of doing some research before this conversation, I noticed you were quite critical of one New York Times columnist’s essentially conflation of disability with suffering. And one of the things that I have noticed in the predominance of language used, just in a lot of public rhetoric, particularly a lot of political rhetoric, is it’s either the language of commerce or the language of domination. And it seems like you have sort of doubled-down on the language of belonging and belovedness and done so very consciously. So I wanted to ask you about why it is so important to get our language right as we think about limitation and vulnerability. And how does the language we use actually affect our own assumptions about what it means to be human?

Amy Julia Becker: Yeah. It’s such a great question. And I certainly am someone who’s on the far end of caring about language, you know. And so I want and I have, over time, I think, become a lot more gracious in terms of not writing people off who, in my mind, don’t use the right language. And I know from my own experience, when I first gave birth to Penny, I literally was aware that I did not know how to speak about having a child with Down syndrome. And it’s confusing, I’m sure people feel this way, that there are— you know, am I supposed to say “child with Down syndrome”? Am I supposed to say “disabled person”? And there’s even some debate within the disability community about that. So it can feel like, I’m only going to stumble, how can I say anything? And I certainly would rather have that posture of humility of “I’m not quite sure what to say here, but I want to engage in conversation,” than feeling like, “oh my gosh, if I say it wrong, then I’m not allowed to be a part of this dialogue.”

At the same time, I also began to realize that the reason for the debate is real, that for people who said, “Oh, I hear you have a Down’s baby”—which, you know, I heard a lot, and I still hear people refer to Penny as a “Down’s child,” as opposed to a child with Down syndrome—there was a difference in terms of what the emphasis was as far as her personhood and her humanity. And it really did matter. And I do think that our language both shapes reality and is shaped by the realities that we live in. And so being careful with our language and even asking questions when we—. You know, I think there are lots of terms related to disability that get used in public. The ‘R’ word is one that has been, in many cases, excised, and yet people still say, “Oh, that’s so lame.” Or “I was blind to…” And I think just asking the question, what am I saying when I use these words that are related to disability? Am I creating a hierarchy of value? Am I playing into that unintentionally? And is there a way in which, again, with grace and compassion, I could question myself and perhaps do differently?

The one word that I do take great issue with, which is what you’re referring to as far as a New York Times’ columnist, is the idea of “suffering” from a disability. There can be suffering related to disability. And let’s not pretend that’s not true. And yet conflating those two words, I think, is actually just false. Penny has experienced very little suffering. Certainly— well, much of the suffering she has experienced for having Down syndrome has come from societal expectations or norms placed upon her, whether that’s exclusion from friendships or from just having a hard time participating in groups, not suffering that comes in some sort of, “oh, gosh, she’s been, you know, hospitalized many times” or has experienced pain in those types of ways. So I think it’s important for us to be careful in lots of different ways when it comes to language because we want to be filled with receptivity to one another as humans.

Cherie Harder: You know, in some of your earlier writings, you talked a lot about belovedness and belonging as being—or, you know, a better understanding of them—one of the gifts of loving a child with Down’s. And in your most recent book, To Be Made Well, you actually draw a connection between belovedness and belonging and healing. And you talked about the way that Jesus was not only constantly healing, but in doing so he tends to name the belovedness and reinforce the belonging of those he healed. And I’d be interested in what you see as the connection between the two.

Amy Julia Becker: Yeah. So in To Be Made Well, I’m looking at a story from Mark chapter 5. I’m sure many people are familiar with this story. It’s a woman who’s been bleeding for 12 years who encounters Jesus and touches the hem of his cloak and experiences actually the flow of blood stops. And so, many of us would say that’s when her healing is also complete. And yet Jesus then insists that she come and speak to him face to face. And when she does, he calls her “daughter,” which is a really significant term, both in the context of the story—Jesus has been interrupted on his way to a prominent religious official, Jairus’s house, where he’s been asked to heal Jairus’s daughter. And so in calling this woman—this outcast, bleeding, poor, helpless, and probably honestly ashamed; we know she’s trembling with fear when she comes before Jesus—in calling her “daughter,” he is, I think, naming her belovedness and not just her belovedness to him but to God the Father and really making this kind of implicit comparison between Jairus’s love for his daughter and God’s love for this woman. So there’s this public proclamation of her belovedness. 

And then there’s also, the public part of that, is this reincorporation into the community, in being able to say not only has she been made well, but he actually says, “Your faith has made you well,” which is kind of bizarre, because we know that she reached out her hand to touch him, and that’s when her bleeding stopped. And yet he almost doubles down on like honoring her and lifting her up and elevating her status, which again, we see throughout Scripture this idea that God lifts up the lowly. He humbles the proud, but I don’t think he does that in order that they might go to the back of the line so much as to say, we really want, instead of creating these hierarchies of status in which some people are striving and it’s working to get ahead and other people are left in the dust, there’s really a sense of the elevation of humans because of our common belovedness.

And then the belonging piece is that we are meant to be in relationship with God and with one another. And so Jesus is constantly—it’s not just in Mark 5—constantly, whether it’s the healing stories or even just his interactions with someone like Zacchaeus or the woman who falls at his feet and washes his feet with her tears, there’s very much a sense of wanting not only to heal in the physical sense, but very much so in both a spiritual sense and a communal sense, in saying part of the healing is being reconnected.

And I think we see that right now. We are in what we’re calling an epidemic of loneliness. And there are actual physical health complications that are coming. And obviously there’s a mental health crisis that is coming alongside that loneliness. So there is a sense of us needing to know that we are beloved and knowing that we belong, that we are a part of a community that doesn’t just welcome or include us, but that actually needs us in some capacity. There’s something that we get to give, as well as obviously something that we get to receive by being a part of communities and relationships.

Cherie Harder: You know, along those lines, obviously with many disabilities as well as many physical illnesses, physical cure is not necessarily possible. And, you know, in that case, do you see the healing involved being that of connectedness or is there more to it?

Amy Julia Becker: I think there’s a both/and. So what’s interesting— I mean, To Be Made Well is really a book that’s exploring this concept of healing and exploring it in the context of people who do experience chronic pain, chronic illness, disability that doesn’t change. What does it mean to say that Jesus is a healer in that context? And I do think that the spiritual restoration and communal connection is of higher value and importance to God than physical curing. There’s a man named Brian Brock who I really appreciate. He is a theologian in disability studies, and he writes about his son Adam who has an autism and Down syndrome diagnosis. And Brian writes that Adam is the healthiest person he knows. And he’s being a little provocative in saying that. But what he’s also saying is that Adam is the person who lives in the presence of God more than anyone else he knows. And that health, it comes from the word wholeness. And what does it mean to be whole? It means to be in right relationship with God and with our neighbor.

I’ll tell one other story. When Penny was first born, I have a friend who has cerebral palsy and uses canes to walk, and I was talking with her and I was trying to kind of parse through a lot of these questions and was thinking about, will Penny have Down syndrome in heaven? Like, this a permanent aspect of who she is, or is it something that’s going to be healed, essentially? And so I asked my friend Jess if she thinks that she will walk with canes when she gets to heaven. And she said, “I’ve never thought about that before,” which in some ways was all the answer I needed. Because that, to her, was just not the top of the list. What she knew was she would be in the presence of love, that she would be seeing Jesus face to face and all would be well. And again, she wasn’t saying, “Absolutely not. This is my badge of honor!” But it was not the animating question, and it helped me to recognize that I have seen—even from a Christian perspective—an ideal human as like a superhero who could do everything for myself and by myself, which is actually like antithetical to the biblical vision of what it means to be human, which is to be in relationship with God and with one another. And so that was very transformative for me in terms of starting to think differently about what it means to be made well. And that I needed to be made well, honestly, far more than my infant daughter did, that’s for sure.

Cherie Harder: You know, it can be both comforting as well as inspiring to think about disability or just our human vulnerability as an opportunity to actually reexamine and to better know both our own connectedness or need for belonging and belovedness. But it can also, I imagine, be very difficult in the day-to-day, whether one is dealing with just the constraints of disability or the difficulty of caring for someone with disability. What do you say, having walked this road for almost two decades now, to those who are either just frustrated to the core by their own limitations or the responsibility of caring for them? And relatedly, I’d be interested in what spiritual disciplines you engage in as you walk this road, to be able to heal yourself?

Amy Julia Becker: Yeah. I mean, I think you’re right. And there are different stages of our human experience, right? Whether that is, if you are a mom of a young child who has significant medical needs, those spiritual disciplines are probably going to look very different than my situation right now, which is that I have to wake my children up in the morning because they don’t want to get out of bed, so I can get up ahead of them and have kind of whatever time I need. So, certainly, there’s going to be a sense of needing to adapt whatever I say to your situation. And yet I do go back to that receiving belovedness as the starting point. And for me, that really does look like a prayer practice of receiving belovedness. And I do that in a couple of different ways. Even before getting on this call, I could feel that I was just a little bit amped up and thinking that I needed to produce and perform. And I set a timer for five minutes, and I closed my eyes and I put my hands on my heart. And when I breathed in, I used the word “beloved.” And when I breathed out, I used the word “fear.” Like, I’m going to breathe in the love of God, and I’m going to breathe out the fear that I have that I won’t be good enough. And that is something I do regularly in the morning, just as a way of sitting before God. So that’s one practice that I think is also related to just how do we get through?

The other thing I would say is just, yeah, finding people. And that might be only possible through the internet, depending on where you live, whether that’s finding groups of people who have the same diagnosis as you do or as your child does and getting practical support. Penny has just turned 18. And one of the great stresses for me about that was deciding whether or not we would become her guardians, or whether we would allow her to be an adult in the eyes of the law. And I didn’t know what to do. And I wrote a little bit about this online. And three people who I’ve never met in person privately messaged me and said, “I’ve walked that road. I’d love to have a conversation with you.” One of them had petitioned for guardian, one had not. One was a special education teacher who’d just been to a seminar and said, “I think I have some materials that might help.” But it was a beautiful example of the ways in which we can help one another. And there wasn’t a right answer, but there were people who were willing to guide me along that way.

So receiving belovedness, finding your people—in terms of being able to ask practical questions, but then just also finding people. I think, yeah, there is usually more time involved in whether it’s having a child with a disability or having a disability. Like, it just takes time. And we often sometimes we want to pretend like that’s not true, but it is. And I think that especially for people within the Church, like, being willing to give of ourselves when we have time to give and being able and willing to ask that of others, whether that’s time to pray, time to bring a baked chicken or whether it’s, “You know what? I’ve got a child who needs me. I can’t bring the baked chicken.” And you don’t need to feel guilt about that. So there’s some practicality to that as well.

Cherie Harder: Thank you. Well, we’re going to turn to questions from our viewers. And if you are one of those first-time registrants, you can ask a question in the Q&A feature. I see so many questions have come in. We can’t get to them all. But we’ll try to select a cross section for Amy Julia. So our first question comes from an anonymous attendee who asks, “Can you speak to how the Church has historically understood and treated disability?”

Amy Julia Becker: Yes. I could answer you any way I wanted, which is to say the Church as a whole has done a beautiful job and a horrible job in different times and different places when it comes to disability, which is so interesting. So again, I mentioned Brian Brock, and he has written a book called Wondrously Wounded, which is pretty dense and theological, but I love it because he went back to the early Christians and looked at how they treated disability. And the early Church Fathers, he really starts with Augustine and says, you know, Augustine said the Greek and Roman understanding of a child who was born with a disability was that they were horrors. I mean, just that they really, in many cases, might be left to die, exposed to the elements. And the Christians knew that God valued life, but they were still trying to figure out, again, back to that question of like, but is this a particularly broken aspect of creation? And should we understand these children that way? And Augustine says, just because we don’t know the answer to that question doesn’t mean that we should assume we understand. If anything, we are inclined to value the wrong things. We value strength. We value the way people look. And we know that God values the heart. And so he termed babies—they were talking about babies with disabilities—marvelous rarities. Like, we don’t know what’s going on here, but we’re going to assume they are a wonder of God’s creation and we’re just going to operate from that place.

I think that would be a good word for the Church in general. Certainly, there have been churches that have also, you know, played into even like the eugenics movement in the United States in the 1920s, which was definitely really against people with disabilities and pro-sterilization and all sorts of things. And I think the way in which both we talk about euthanasia and prenatal testing can all relate to how we think about people with disabilities. But I will say there are a lot of churches and nonprofit, faith-based organizations that are proclaiming a message of belovedness and belonging and wanting to really extend welcome and honor to people with disabilities today, at least— well, in the United States and in some places around the world.

Cherie Harder: So I want to combine two questions that really pertain to how do we get to the point of truly seeing children with disabilities as, you said, “[marvelous] rarities”—I love that. So an anonymous attendee asks, “Have you known people who have displayed an ability to value human beings without reference to their capabilities? If so, how do they get to be that way?” And somewhat relatedly, Kristen Cam asked, “Can you expand on what the process of recognizing your own prejudices was like? I don’t want someone’s disability to be the first thing I recognize about them, but that’s often the case. I want to see their whole humanity.”

Amy Julia Becker: Those are such great questions. And I’ll do my best to try to hold all of that and answer it. Gosh, what came to mind in terms of have you seen someone or people who can just receive not based on capabilities—yes. Like, people with Down syndrome are very often able to receive others without that type of hierarchical judgment. I remember speaking to a group of high school students who were at a very elite high school doing a lot of perform-and-achieve work. And I was telling them about Penny, and I asked them just to imagine having someone in their life who cared about them not because of their SAT scores or the varsity sports that they were playing, but because of the things they enjoyed doing in their spare time, because of who they were. And the number of kids who started crying just in the thought of being valued as they were and not for what they did was really startling to me. And yet also rang true.

And my friend Heather Avis, who is in charge of the Lucky Few Foundation, which is just something for those of you who are interested in these things to look up, she has two children with Down syndrome, and one of the things she’s talked about is that—well, one of the things we’ve talked about together—is the lack of ego associated with at least the people we know with Down syndrome. That there just is not ego. That doesn’t mean there’s not any sense of self-esteem, but there’s just not a sense of needing to be better than someone else.

The last thing I’ll say is we go to a camp called Hope Heals in the summer, and there’s a talent show at Hope Heals, and it’s all people with disabilities who are displaying their talents in whatever way. And this summer, there was a group of middle school boys who led the cheering at this talent show. And to see these boys who I think typically would be the most likely to cut someone down in order to display how cool they were, to see them leading the cheering, which then lifted everyone up, it gave me this sense of yeah, again, like what God wants to do in getting us to see each other on a level playing field instead of in that hierarchical way, he wants to lift us all up and not push some to the bottom and raise others to the top. But when we try to do that for ourselves, that’s what ends up happening.

All right, so now I’m going to try to turn to the second question, as far as how things changed in me, like how I kind of saw my own prejudices. You know, that’s been a long process. And I think naming— one of the things that I have come to believe about healing and wholeness is that honesty, humility, and hope lead to healing. So that sense of just what you said in your question, like, “I don’t like this about myself, but it’s true.” That’s a huge statement of honesty, but also of humility. Like, “I need help.” And help can come by reading things, and it can come by forming friendships and it can come by praying about change. But that admission of honesty and humility is what will lead to a hopeful movement of transformation that might take a long time. I mean, again, I’ve had Penny in my life for 18 years, and there are still times where I can find myself slipping into a judgmental or hierarchical model, or again, seeing someone’s disability rather than them as a whole person. But I do think that honesty, humility, hope—that’s really a helpful sense of the movement of God’s Spirit within me leading towards wholeness. And I would also say it’s a spiral. Like, it’s not a straight line. It’s like honesty, humility, hope—and again. But we’re moving, you know, we’re moving. We’re just not like rocketing upwards.

Cherie Harder: I love that. I want to continue to combine a few questions just because there’s so many good ones, and there’s two of them that are on language. So Sally Quinn asked, “You use the word ‘disability.’ My son is learning ‘disabled,’ but he hates that term and he uses learning ‘different.’ How do you feel about that?” And then— why don’t we just ask Sally’s then we’ll go on to the next one.

Amy Julia Becker: Okay. I don’t love the term “disability,” and I use it daily because I’ve come to peace with it simply because it is actually like a medical and governmental designation that is necessary in terms of recognizing what supports and services people deserve and are entitled to. And also because there is a movement within the disability rights community for saying, “Yeah, you know what, I can claim this as a part of my identity and I don’t need to be ashamed about it.” And I believe that is true. What I don’t like about it is implicit in the language is this idea that you are not— I mean, you know, a disabled vehicle is one that can’t go down the road. And that’s just not a helpful or true comparison at all. So I would completely honor your son in wanting to say “learning difference” because I think that’s actually probably more accurate, but I do use the word “disabled” and “disability” because of both the identity and the technicality behind the term.

Cherie Harder: Makes sense. So, somewhat relatedly, Claire Thiel asked, “When we hear people speaking in the way you mention—’I was blind to that’ or ‘that’s lame’—how do you suggest that we approach these situations? How can people who are not a part of the disabled community support the disabled community?”

Amy Julia Becker: Yeah. You know, that’s a great question. I find myself still sometimes using that language. So again, I think grace to ourselves and to others is important, starting with ourselves as far as examining language. And perhaps even in a conversation like that, being like, “You know, I’ve been thinking about that term, and I’ve realized I use it somewhat thoughtlessly if I’m considering what it might feel like to be someone who uses a wheelchair.” And you might get mocked for that. And most conversations, I do feel like you’re knocking on the door of someone’s house, and they might come to the door and then slam it in your face, at which point usually you walk away. Like, it’s not your job to police other people’s language. And yet it might be an opportunity for a conversation where you get invited into the living room and you sit down and talk about it.

So, I think grace, self-examination, and curiosity as opposed to condemnation are generally— and, again, when Penny was younger, not the words “lame” and “blind” in my case, but when people talked in terms that were really hard for me, I felt defensive. I wanted to cry. It was so hard. So that’s really different than where I am now. I just don’t have that same reaction. And so I just also want to say, if you’re in a place where some of that language just like cuts really deep, again, just to be gentle and careful with yourself is also really important.

Cherie Harder: So our next question comes from Anne Custer, and Anne says, “I have a four-year-old daughter with Down syndrome, and your book was really instrumental in processing our diagnosis. Thank you for that.” She says, “I am wondering, as Penny grew up, how you spoke with her about her own Down syndrome and how you have talked about it with your other children.”

Amy Julia Becker: Yeah, that’s a great question and something we really had to think about a lot in the beginning. Especially because we did not have a prenatal diagnosis, when Penny was born, we were sad and it was scary and it was hard. And I really wish that that weren’t true. I really wish that I could say we just celebrated your birth. And I know people who’ve been able to do that with their children with Down syndrome. But we decided that we, with all of our kids, including Penny, want to use the language of disability and Down syndrome. The two things I say are “neutralize” and “normalize.” So that we’re not shying away from that language, and we are also trying to use disability as a neutral term.

So one of the things we do a lot in our household is talk about the challenges and the gifts that we all face, recognizing that there are different challenges and different gifts. And those have led to some really helpful conversations with Penny, but also with our son and with our other daughter. And then on the normalizing, I think, you know, I remember when our son was three years old and he was like, “Mom, I know what Down means, but what does ‘sin-drum’ mean?” Like, he didn’t even understand, you know, “syndrome.” Like, he didn’t know what we were talking about. And we had this conversation, and we were talking about disability and we’re talking about Down syndrome. And of course, I’m like, he doesn’t know what chromosomal abnormality means either. He doesn’t know what extra chromosome means. Like, there’s no language that’s going to work here. And I remember saying, “Well, she has an extra part to her.” And he was like, “What?” And I said, “Well, you know, it makes her special.” And he’s like, “I want to be special.” I did so many things that didn’t help at all.

But then finally he had a little girl in his preschool classroom who probably was on the autism spectrum. And we were talking about her, and he just talked about how she sometimes cried a lot and threw things. And it kind of felt like this opportunity for me to be like, okay, so I can either say, “oh, gosh, life must be really hard for her. You need to be a good, special friend,” which would not be a bad thing. But, again, it felt like I would be starting a hierarchy in which he is the one who is strong and capable and she is the one who is weak and vulnerable. And what if there were strengths and capabilities that they both had, as well as weaknesses and vulnerabilities? So I said to him, I was like, “Oh, okay. Well, do you ever notice anything that she really likes to do?” And he was able to talk about that. “And are there ever any things in your classroom that are frustrating and hard for you, even if you don’t respond in the same way?” Yes. And so, again, it kind of normalized and neutralized the idea that we all approach situations and life with both challenges and gifts to offer. So that’s been, you know, my framework from really early on, and it still is even with teenagers.

Cherie Harder: Somewhat along those lines, David Sitzer asked, “What are some ways that people relate to your daughter that make you especially grateful?”

Amy Julia Becker: Mmm. That’s a great question. So, and I think she would agree here, speaking to her directly rather than assuming that I need to speak for her is an honoring thing. And that is true for people who are not able to communicate verbally as well. Penny is able to communicate verbally, but there are many people with disabilities who cannot. And that doesn’t mean that they don’t really appreciate eye contact and being addressed and communicated with, even if it’s not through language. So that would be one thing.

And I think kind of assuming possibility—so whether that is her— I remember when she was going on to the swim team, she wanted to be on the swim team when she was in middle school. And I got a call from her occupational therapist through the school ahead of time, who said, “Is it going to be challenging for Penny to put on a bathing suit? I want to anticipate this because I don’t want her to feel left out in the locker room.” I, her mother, had not begun to think about that. I mean, it was so kind for this woman to be like, “I’m just thinking ahead to what might be challenging for Penny so that we can really make sure that she’s in an environment that’s safe and fun and good for her.”

So those are two little examples. There are plenty more I could offer, but that sense of anticipating need, but at the same time—. Sorry, last thing. There’s a concept that I’ve learned about in this past year called the dignity of risk. And so also not jumping in and doing things for her that she can do for herself. And there’s obviously a fine line between anticipating need and the dignity of risk. And then also, again, just that sense of communicating with her as an individual and not assuming that I or someone else need to mediate that.

Cherie Harder: That’s great. So our next question is from an anonymous viewer who asked, “Our first child was born with Down syndrome last year. He is a gift. We plan to have more children, but I’m nervous about what it will be like to have a younger child ‘surpass’ their older sibling in learning or physical ability or whatever. Can you speak to how you dealt with raising Penny as an oldest sibling?”

Amy Julia Becker: Yes, that’s a great question. I’m not sure anyone’s asked me that before. I think what’s interesting is that, for a long time, Marilee and William did not really see Penny as disabled because she was their big sister. And I remember when William started to actually have both—you know, he’s over a foot taller than his big sister—and when he started to be taller and stronger and kind of capable of different things and especially in terms of math than she was, and that was a little bit confusing to him. And yet again, that’s where we just tried to use the, like, normalize, neutralize. Like, we can talk about this and it doesn’t mean she’s not your big sister.

So I think for them—. And the other thing I will say, actually, before I get to that is Marilee and William keep Penny in her place in a positive sense. I am much more likely to do things for Penny than I am for Marilee and William, because I know it will take Penny longer to get things done. And they will have none of that. Like, if they’re unloading the dishwasher, so is she. And, you know, Marilee, if Penny has not done her kitty litter duties, then there’s no way she’s doing it for her. And so there is a sense of, like, very much we’re not letting our big sister get off the hook from family chores. And Penny is capable of that. This is a completely fair. I just tend to jump in in ways that I probably shouldn’t a lot of the time.

So I would say that this has actually been a positive good within our family. And I will also say that I’ve talked to other siblings, adult siblings of people with Down syndrome. And I remember talking to a woman named Jenny Newberry. She runs an organization called Camp Pals and has a younger brother with Down syndrome. And I asked her about, like— you know, for me, there was a before and after, which you all have heard about. Right? It was almost like a conversion experience where I can tell you what I was like before, and I can tell you what I was like after. And I remember talking to Jenny and she was like, “No, it’s just, like, I was born into this.” And so it’s so comfortable and familiar. And it doesn’t mean there’s never been a struggle or she’s never been upset with her brother or something like that. But I do think that for siblings to grow up together gives them the gift of each other in this very natural way that does not involve at least the same struggles that I’ve had in terms of identity and what I called ugly grief earlier. So I don’t know. For us, I would say it’s been really good.

Cherie Harder: Yeah. So an anonymous attendee asks, “Have you seen Christian communities that are doing this well? And if so, what can we learn from them?”

Amy Julia Becker: Yes, I have. I’ve seen lots of Christian communities doing this well. And I think a lot of it begins with mindset. It begins with an assumption of belovedness and an assumption of giving and receiving. So I think that where we get into trouble, obviously, we get into trouble when we want to exclude people with disabilities. I’m guessing that there are very few people on this call who think that’s the proper response. What is much more natural and certainly, again, was my initial response, is to see disability either as a problem to be fixed or as a tragedy to be cared for. There’s a good Christian instinct both towards justice and care. Those are necessary and good. And yet they can distort that sense of mutuality. And so the places that I see that are doing, I think, the best job are ones in which there is a real assumption that if I am someone in a typical body or, you know, with typical intellectual capabilities, to assume that in my encounter with someone with a disability or my relationship with them, I am not only giving, I’m also receiving.

I’ll just give one short example. There was a woman in our church who had a son with autism, and she was having a really hard time participating in the life of the church. And I remember suggesting to her that she find someone within our church who could come and be with her son once a week in their home so that she could participate in, I think it was a women’s Bible study, and she was like, “I couldn’t give anything back, I couldn’t—. I don’t have money to pay them. I don’t have time to go mow their lawn. Like, I couldn’t return it.” And I said, “Oh no, you’re not understanding me. This would be asking God to provide someone where the gift is being with your son. He’s the gift. He is the reward. He’s the return. And you’re right, not everyone in our church would receive it that way.” And so that sense of, like, trusting that, yes, there’s a gift to be received, not simply care to be given, seems really important to me in these organizations that are doing it well. 

And a couple that come to mind: there’s an organization called Hope Heals, I mentioned, where we participate in camp in the summer. There’s an organization called Special Hope Network, which is actually in Zambia. And they are equipping families in the poorest sections of the city of Lusaka who have children with disabilities to really incorporate those children in their families. I love the work that they’re doing. There’s a place called Reality Ministries in Durham, North Carolina, that’s working with adults with disabilities. There’s an organization called Friendship House. So I’ll just name a few of those if you want to look them up.

Cherie Harder: That’s fantastic. Thank you, Amy Julia. And in just a moment, I want to give Amy Julia the last word, but before that, a few things just to share with you before we move on to the final word. First, immediately after we conclude today, you’ll see an opportunity to take a feedback survey. And we really encourage you to do so. We really appreciate getting your feedback and your thoughts. We read all of these. We do try to incorporate the suggestions into making these ever more valuable. And as a small token of our appreciation for your thoughts, we will send you a code for a free Trinity Forum Reading download of your choice. There’s a few that we would particularly recommend that serve as aids to kind of go further into this topic of vulnerability and belovedness and belonging, including “Babette’s Feast” by Issac Dennison, “Bright Evening Star” by Madeleine L’Engle, “Wrestling with God” by Simone Weil, “Bulletins from Immortality” by Emily Dickinson, and letters from Vincent van Gogh. So we encourage you to accept that invitation and leave us your feedback.

Secondly, tomorrow, right around noon, we’ll be sending around an email to all of you who registered with a video link, as well as a list of further reading, recommendations and other resources. So we would love for you to share the link and start a conversation with your friends and family, and be on the lookout for that.

In addition, we would love to invite all of you watching to join the Trinity Forum Society, which is the community of people who help advance Trinity Forum’s mission of cultivating, curating, and disseminating the best of Christian thought for the common good. There are a number of benefits and advantages to being a member of the Trinity Forum Society. In addition to promoting the work, it also entitles you to a subscription to our quarterly Trinity Forum Readings, a subscription to our daily “What We’re Reading” list of curated reading recommendations, and as a special incentive with your membership or your gift of $100 or more, we will send you a signed copy of Amy Julia Becker’s latest book, To Be Made Well, so please avail yourself of that opportunity. We would love to welcome you into the Society.

In addition, if you are interested in sponsoring a future Online Conversation like the one today, we would love to hear from you. And you can just indicate that in the follow-up survey or simply email us. Finally, I wanted to let you know about a few exciting new Online Conversations and other events coming up. Two weeks from today, on March 15th, we’ll be hosting Philip Yancey on “Life, Death, Poetry, and Peace.” The week after, we’ll be hosting Charlie Peacock and Andi Ashworth on the topic of “What Matters Most.” And then in April, we’ll be hosting John Inazu on his new book, Learning to Disagree, and the poet Christian Wiman on his wonderful new work, Zero at the Bone. I’ll also just flag that we are in the midst of our Lenten podcast series and have our newest episode coming out on Tuesday, featuring Jessica Hooten Wilson on reading as a spiritual practice.

Finally, as promised, Amy Julia, the last word is yours.

Amy Julia Becker: All right. Two things I want to say. One, I’ve said already, but I want to repeat it: that disability is like a magnifying glass that helps us to see our common humanity. We are vulnerable, limited, broken, beautiful, blessed, and beloved. And the second thing: understanding disability invites us to challenge assumptions about what makes life good, proclaim the inherent belovedness of every human being, and envision a world of belonging. 

Thank you.

Cherie Harder: Thank you so much, Amy Julia. And thank you to all of you for joining us. Have a great weekend.