Amy Julia Becker: Reimagining Disability

[00:00:00] Speaker A: Foreign. [00:00:10] Speaker B: Welcome to Becoming Church, the podcast where we discuss how the message and movement of Jesus is not just about becoming Christians, but about becoming the church. I'm your host, Kristin Mochler Young, and my guest today is Amy Julia Becker. She helps people reimagine the good life specifically for people in the disability community. If you get to love a child or a person with a disability, I hope this episode feels like a hug and a reminder that you are doing a beautiful thing in loving this person that God has gifted to you. If you don't have anyone in your life with a disability, this conversation may introduce you to some invisible disabilities and help you see the people around you in a different light. Amy Julia. Welcome to Becoming Church. [00:00:56] Speaker A: Oh, I'm so glad to be here. Thank you for having me. [00:00:59] Speaker B: Yes. Glad to have you. I also want to thank you publicly for your grace, as I had to text you this morning. My kids are currently on spring break, and so we had one of those mornings where I, like, couldn't get out of the house and then I hit a train and all those things. [00:01:13] Speaker A: The way you said that, it sounded as though you actually physically ran into a train. And I'm really glad that was not what your message communicated. [00:01:20] Speaker B: Yes, but I did. I was. Your email back was so gracious, and I had the thought. I was like, I genuinely love interviewing moms because they get it. Like, they just get it. [00:01:30] Speaker A: So in there. Done that. It's always nice to know that I do not have to be, you know, perfectly on time and all put together in order to have a conversation. [00:01:40] Speaker B: Yeah. Yes. Well, tell the people listening a little bit about your family and your work, because I have a feeling that they're kind of connected. [00:01:48] Speaker A: They're very connected. That is true. I have three teenage children now, so our oldest daughter, Penny, is 19 and has down syndrome. And so her story was actually what introduced us not just to the world of disability, but to being a parent. And that has shaped our family in many, many ways. I also have two typically developing kids, William, who is 16, and Merily, who is 14. We live in Connecticut, actually on the campus of a boarding school. So that's kind of a funny piece of my life that we live amidst 600 students who are from around the country and around the world. High school kids, 9th through 12th grade. My husband is the head of the school, and I was like, how did that happen? [00:02:31] Speaker B: That makes sense. [00:02:31] Speaker A: Yeah. Yeah. So we've been kind of in. He and I have lived on boarding school campuses for our whole adult life. So for A long. And we went to boarding school. It's like a weird piece of who we are as a family. But what it means is, actually, I've got lots of teenagers in my life, which I love, including three of my own. And I have, ever since, um, Penny was born, been kind of. Well, a couple years after she was born, actually, because it took a lot. Lot of journaling where I was writing privately about what was going on in my heart around the fact that she had down syndrome. After that, I got to a point of being able to write and speak and teach more publicly about all of those things. And that's continued for now, almost two decades. [00:03:12] Speaker B: Okay. Yeah. And we're going to get a lot. Thank you for sharing your family with us. We're going to get a lot more into your work and how you kind of got there, the things that you've. But I think it's funny, you use the word reimagine a lot. I was on your website and looking into your stuff, and we also love that word. We use it a lot around here at Mosaic, talking about reimagining, you know, what it means to be a Christian and what it means to be a church. But you are reimagining family life, especially for families where there's a child with a disability. So what does that. What does reimagining mean for you? [00:03:46] Speaker A: So that I later looked back on and came up with that word to describe our experience early on, where we had an imagination for our family that we didn't even know we had. When we went into that hospital, you know, without a diagnosis, and I gave birth to a child, and I didn't know that I had already imagined the path she would walk. And it wasn't as though I was, like, super specific, oh, someday she's going to be a varsity tennis player or something like that. But I did have a sense of an imagination for our future based on the images literally, I had from other families that I saw as being like ours. And when we found out that she had down syndrome, which was a couple hours after her birth, it was as if the imagination was completely stripped away and I had nothing left. And the things that the doctors gave me were not helping me to reimagine, at least helping me to reimagine in any positive way, it felt like all I was hearing were lists of things that might be real challenges, health problems, concerns. I was getting words like defect and disorder. And, you know, I was just overwhelmed. And I actually took a couple of months. This, thankfully, I think, for Many parents happens more quickly now because of social media. And this is a positive for social media that, you know. But for me, what happened was a couple months into Penny's life, I was given a coffee table book, and it was called Common Threads celebrating Life with Down Syndrome. And it just had photos of families and friendships that involved people with down syndrome, little kids, older children, and little stories. I mean, you know, paragraphs to describe them. So it was mostly those images of, like, wait, what if we could be a family that had love and dinner and just kind of like somewhat ordinary life that included a child with down syndrome? And so it helped me begin to reimagine. And, of course, actually meeting people who had down syndrome helped to fill that in in an even more of a full way. But it was really those initial images that made me think about our family could be something different. And I've had to do that at lots of different moments along the way of our journey where I get scared about what's ahead. And that happens a lot with transitions for Penny, like going to middle school, going to high school, finishing high school, you know, and. And honestly, our culture has shaped our imagination around disability in ways that I don't think are particularly helpful or true. And so that's another piece of the reimagining is not just, I don't know what to think, but actually I need to counter some of the messages that I've received with. With a new imagination for what is possible in our family. [00:06:25] Speaker B: Well, I really appreciate that you talked about it being a process, because I think so much of life is a process. Right. And I imagine this is not one of those things where you're like, okay, now we fully have accepted Penny and her diagnosis, and now we just, like, go on with our life, because kids are constantly changing, you know, and every child is constantly changing. As soon as we think we have them figured out, they're like, just kidding. We're doing something else. Now, is there a common thing that you've seen either in your life or in your work? I mean, let's just start here that. That you think people need to unlearn or let go of when it comes to people with disabilities? [00:07:02] Speaker A: Yes. [00:07:03] Speaker B: And I want to know just a couple. [00:07:05] Speaker A: I was and still am sometimes one of those people. So as you said, continues to be a process, because I do think we have an understanding of disability that sees disability as problem, brokenness, lack, even tragedy. And certainly there are aspects of disability that can be really hard and very painful. So it's not to say that's not true. But at the same time, I really think that disability is a natural aspect of our human condition that most of us will experience temporarily or permanently at some point in our life, whether that's a part of our bodies or our brains. And there is a sense of not being quite so black and white in our thinking about, like, oh, well, this is brokenness, and this is wholeness, or something like that, as opposed to recognizing the real gifts and possibilities as well as the real limits and challenges that people with disabilities face. The other way, disability, you know, I needed to kind of unlearn. Was the idea of disability as, like, a joke or an insult. That comes out a lot where people mock people with disabilities. You see it all the time. And then finally, the other way that we can. We need to unlearn disability as inspiration or lesson this idea that someone with a disability exists so that I can learn something. Like, there's, like, an objectification of a human that happens when we just want the really, like, beautiful story. And, of course, again, people with disabilities are often quite inspiring because they are telling stories of overcoming. And it's not to say that that's not true, but when they are reduced to that, where there's not really an understanding of that, the fullness of, you know, their humanity, then we can. Again, we need to do some unlearning. [00:08:49] Speaker B: That's really good. I had a conversation recently with a girl named Renee Dolanmayer who is in a power wheelchair. And so we kind of had a similar conversation. I talked with her more about, you know, disability in general. I want to talk more specifically with you about families and kids. But that was something that she said, too. She was like, I'm not an inspiration just because I was born differently. And now I use. She's like, I'm just in my kitchen. I have to do my dishes like everybody else. [00:09:16] Speaker A: Exactly. [00:09:17] Speaker B: You know, yeah. [00:09:19] Speaker A: That's a great example of just allowing people to be ordinary and not feeling like they either have to be a tragic story or an inspiring one, as opposed to a very human one with the particularities of whoever they are and their bodies and minds, but also just this kind of common humanity that we actually share. [00:09:37] Speaker B: What do you think it does, Amy? Julia, what do you think it does when we either go like, okay, you are an inspiration, or you're a tragedy, and we can't, like, land in the middle? What are we robbing those people of when we do that? [00:09:51] Speaker A: Well, so I think we are robbing them of the full humanity of being, and therefore Separating ourselves from them. And I think that's a lot of it. Is that the kind of typically developing population. Well, all of us are inclined to set ourselves onto, like, social hierarchies. Like, we want to be somehow comparing ourselves and finding out that we are better. And yet we also know, I mean, it's not just that we're robbing them of something, we're robbing ourselves of something. If we do that, because we're robbing ourselves of the connection that is possible. We're robbing ourselves of understanding our humanity more fully, and we're robbing ourselves of what happens when we actually can step off of that status ladder and be human together. Because there's so much beauty and goodness and truth in that place. But we are really conditioned to want to make sure that we are a little bit better in some way than somebody else. [00:10:42] Speaker B: Yeah. Yeah, that's good. That's good. Well, hopefully the things that you can share with us today will help us to be able to make that connection the next time we do come across someone that has a disability. So I want to start. We're going to kind of break this into two sections for people that are listening. I want to start kind of with some questions for people, for parents who maybe have recently learned of a diagnosis. And then we'll move into people, quote unquote, outside of the family, and see how we can educate them as well. So what would you say for maybe someone who is new to this, like, the world of disability, Maybe they're about to welcome their child? I imagine that there's a secret guilt that pops up that kind of says, you know, it's their fault. Like even in the Gospels, right? We hear the story of the man born blind, and the first question is like, well, is it his fault or his parents fault? [00:11:31] Speaker A: Right. [00:11:32] Speaker B: What would you say to a parent who keeps hearing this quiet voice of blame? [00:11:37] Speaker A: Well, so I was again, one of those parents. So I would say I. I get where you're coming from. And certainly the truth of the matter would be, especially when we're talking about the. These diagnoses that are either inexplicable or. Or genetic conditions, which, again, I think can feel like Penny has an extra chromosome, right? That is what it means to have down syndrome. And that is usually passed through the mother. We don't know that that came from me, but it's generally. And of course, I had nothing to do with how the chromosomes stuck together, but it did feel like, well, what, did I do something wrong? You know, and that was A very real thing. So I think we need to enter into the kind of the realness of that emotion, as opposed to being dismissive of it. Because for me, at least, I knew in my head that I had nothing to feel guilty about and that I would tell someone else in my position that that was the case, but in my heart, that's not how I felt. [00:12:34] Speaker B: Yeah. [00:12:34] Speaker A: And so someone telling me that simply shut down my heart because I was like, well, I guess I'm not allowed to tell you that. That's not how I feel. So I think the first thing is to kind of enter into that place of, like, that must feel really hard. Why do you feel that way? You know, just that. So some sort of kind of acknowledgment of the guilt. Not as a how you should feel, just as how you do feel. [00:12:55] Speaker B: Permission to feel what you're feeling? [00:12:57] Speaker A: Yeah, permission to feel what you're feeling. But then I also think, for me, at least, the sense of actually wondering whether Penny was created exactly as she was meant to be, that was actually a pretty scary thought, but also a really ultimately freeing one. What would it look like to receive her as a good gift who has all sorts of limits and all sorts of possibilities, and to just be delighted in who she is and who we get to have in our family? That also was really helpful over time, and I think so. I think those would be the two things I would say is just the kind of being able to feel your feelings to lament the losses. I think this is the other thing for me. Early on, I felt like I had lost the child who I was supposed to be receiving, and I did need to grieve that. So it wasn't just guilt, but there was also grief. But then I felt guilty about the grief because how terrible to be grieving your child who's alive and doing well. And ultimately, I got to a place where I realized I'd been grieving a hypothetical child, not ever a real one. So the grief really was gone, but I still needed to go through that. It wasn't like a real, you know, child who had died, because that the grief would always remain, you know, even if it got slightly less profound and acute. So I think I would say, yeah, feel the feelings. Go through the feelings. You know, let's not try to add shame to the feeling of guilt because you feel guilty about feeling guilty, but also that place of, like, moving towards receptivity and wonder and delight in the child who you have been given. That was a tremendous turning point for me. [00:14:39] Speaker B: I Know, you do a lot of. You've got workshops and books and all kinds of things to help parents get to that place. Is there anything right now that you can just practically say, like, for people that are struggling to maybe accept that idea. Right. That God made this child exactly as they were meant to be? That is a hard concept to accept. Is there any. Like, how can they. They start taking the steps to get to that place? [00:15:07] Speaker A: Well, one place is to actually take delight in your child. And again, that can. Especially for a child who is experiencing physical suffering or kind of separation in terms of emotional or intellectual capacities from a parent. I think what I just said can feel really hard. And so, again, delight does not let. Does not mean you're not loud to. Or you shouldn't lament or experience all these other feelings. But at the same time, looking for ways in which we can understand our children's belovedness does help to shape our imaginations and our lived reality. Right. So for me to recognize the gift that Penny is in our family has meant. So I'll give a. This is a more recent example, and it's very small, but I feel like it's kind of helpful. We were. She was writing down goals when she was a teenager, and one of the goals she wrote down was not rushing. I have always seen the fact that Penny moves more slowly through the world as either a hardship or an irritation. Like, this is annoying. I want you to move more quickly. And it was kind of hilarious for me to be like, oh, she sees the rest of the family as the problem because we are, like, zooming out the door and always moving so quick. And she's got a point that, like, we do. I. If there's anything I would say about myself, it's like, yeah, slow yourself down. Like, you move too quickly through this world. And so that's an example of just something that seemed like a deficit in her, but that could be received as a gift. And not just a gift to me, but to our whole family. And that doesn't mean there are no times where I need to, like, you know, move her along. Exactly. As any parent knows. But at the same time, I do think, or like, one other friend of mine was telling me about a child of hers with autism who often was unable to express anything other than crying and groaning. And so it was really hard as a parent. And again, it is important to name those hardships. But at the end of listening to that story, I asked her, what do you love about your child? And she went on just to tell me the things that she loves and that experience of being able to connect not only on the hardship, but also on the love. It was like very healing. I think for really for both of us. There was just this sense of like restfulness and peace that comes. So it says much. Just naming the ways in which you see God's hand in your child's life in terms of bringing, whether it's, you know, love or kindness or encouragement or whatever it is, being able to name that I think is really helpful. [00:17:53] Speaker B: Yeah, that's good. And that's applicable. I mean, the parent listening with a, you know, typically developing two year old who's throwing temper tantrums all the time can still take that wisdom and be like, God, help me remember what I love about them right now, because. [00:18:08] Speaker A: Exactly. [00:18:09] Speaker B: So hard. Or, you know, whatever. If it feels like we're moving really quickly, you're only kind of dipping a toe into the shallow water of what we can do. It's because this conversation is just the tip of the iceberg when it comes to supporting people with disabilities. If you feel like you didn't get enough information or you yourself are looking for a community to surround you, I'm linking up some resources in the show notes. I also encourage you to reach out to Amy Julia as our expert today with any specifics. All right, let's get into some more practicals. I think too, there's of a lot when we think of disability, you know, we do think of down syndrome, we think of cerebral palsy, we think of autism, we think of all of these things that we can look at a person and just automatically go like, oh, we would call this person disabled. But I think there's also a lot of invisible disabilities. And I know that there are a lot of people listening that maybe their kids fall under that umbrella, whether they've got anxiety, they've got some kind of learning disability, you know, some other kind of cognitive disability that people can't look at them and see. And I know that it's tricky sometimes. I almost said trickier, but I know it's just a different kind of tricky. You know, when Penny was born, the doctors were like, here is the label. So now you know kind of what you're dealing with and you know how to handle it. For parents of children, maybe they're, they're, they didn't have an initial diagnosis, but there's these like little red flags that pop up here and there. [00:19:49] Speaker A: Yeah. [00:19:51] Speaker B: What encouragement can you give to people that are listening who are maybe seeing these little flags that their kid might Might not be, like, normative or typically developing, but they're afraid of either pursuing a diagnosis or maybe they have a partner who is, you know, keeping them from, like, pursuing an appointment with a professional. [00:20:10] Speaker A: Yeah. So I think one thing to name is just that parent intuition is pretty strong and good and to try to see those red flags as, like, helpful information rather than scary information. You're right. Actually. I think it is really helpful to have an immediate diagnosis and a visible one. As much as I would not have said that when Penny was first born, but it gave me a community of people. It gave me a sense of kind of clarity and identity. Actually, even ultimately, that was really helpful. And. And yet, I mean, the last thing in the world I wanted and would have said I wanted was to be a parent of a child with down syndrome. I was like, I do not want to be a part of that club. Like, no, no, no, thank you. And of course, within not very long, I was like, I'm so glad I'm a part of this club. But it doesn't feel that way in the beginning at all. And there's fear about what you might find out, and there's fear that you are going to be told you did something wrong as a parent. I mean, they're all. All the things we've already talked about. And yet you're kind of like, maybe I don't have to know. But what I would say is, so there are two approaches. One is kind of the rational approach of, you know, early intervention is really positive. And that's true not only in terms of, like, therapies and, you know, basic supports that you might receive as a family, but also emotionally, kind of the sooner the better that you start being able to know your child and receive your child and receive supports for your child, the better. At the same time, we are often not rational. And so there's again, a place of kind of the emotional. And you said, you mentioned, like, well, what if a mom is in that place but not a dad or vice versa? How do you have those conversations? And I think that's where story can be helpful. So whether it is saying like, well, can we just meet another family who has experienced some of the same concerns? You know, maybe we're not going to see a professional, but maybe there's another family we could connect with. Maybe there's a television show, maybe there's a book, you know, even if meeting someone in person feels more scary, and then I think also asking the questions, what would happen? In what way might more information help us and that's, again, it's a little bit of the rational, but it's also a little bit of the imagination in the sense that, okay, if we found out that our child was autistic, what would that do for us? Well, maybe it would help with the fact that he's not sleeping, or maybe it would help with the meltdowns. Maybe it would help us understand and connect with our child more, you know, just that. Or maybe it would say, oh, that's not actually what's going on. And that would be helpful information. So I think those are the things that come to mind about what might help to move in that direction. And probably it depends a little bit on the person in terms of whether you're going to connect most through your head or your heart. [00:23:05] Speaker B: Oh, yeah. Wow. You can apply that to anything. [00:23:08] Speaker A: True, true, true. [00:23:09] Speaker B: Yeah, I. I was in the education system for a long time before I moved into ministry. And so I remember I have two daughters. One of them currently has a 504 and the other one is in a. Is in the process of being evaluated. And we're pretty sure she's also going to come out with a 504 on the other side of this process. And I just remember explaining to just family members who are like, why do you need to call it a thing? Like, just. It's just behavior or it's just personality, or can you just, you know, let her be? Like, don't make it a bigger deal. And I had to explain that, like, a label is not actually a bad thing. That the label is what allows us to get help. A label is what enables us to then say to her teachers, no, she does need to sit in the back of the room. Here's why. No, she does need to have extended time on her. On her state tests. Here's why. And they. Then they don't get to fight us on it and they don't get to have the choice of, like, I don't care if you believe it or not, because we've now got a label and paperwork, which means you gotta do what the team came up with to say, this is what's best practice for my kid, you know? [00:24:18] Speaker A: Totally. And I think you make a good point, even just in naming. It's not. Yes, it's. The label is helpful and the team is helpful. And one of the things that actually felt really scary for me when my son was born, I was like, where are all the people who are going to help me be a mom? Because with Penny, I really felt like I had a Team of people who were, like, teaching me how to be a mom to Penny in particular, but in general also. And then when he was, like, crying in the night, I'm like, I don't know what to do, you know, So I think you're right. That, that sense of, like, receiving community, a team of support, a label. What we don't want that to do is box your child into some category of never being able to grow or thrive. Yeah, that's just not true. What this should do is actually help us understand the ways in which we can better nurture that growing and thriving. Because we understand, as you said, that sitting in the back of the class or the front of the class or, you know, having more time or what, whatever it is, is actually what's going to enable them to become who they are becoming. [00:25:19] Speaker B: Yeah. To support them in everything that they need. Yeah, exactly how God made them. Just like you said, you know, from the very beginning. All right, well, let's move to people outside of the family. For people that are listening who maybe have not had, you know, the opportunity to interact with people that have disabilities that maybe are just like kind of starting and, and realizing that they don't know what they don't know, they don't know what to ask. I know that there's a Christian idea of wholeness that for many people is tied to what they would consider to be, like, ideal. [00:25:51] Speaker A: Yeah. [00:25:51] Speaker B: But I wonder if you have seen damage done by well meaning people who want to, like, pray for your daughter to be healed of her down syndrome. [00:26:00] Speaker A: Yes. So, I mean, again, this. This in our case has only happened a few times. I remember very vividly a man at our church who asked if he could pray for her. And at the time, she was having some health concerns, and that was what I thought we were praying about. And then he prayed that she would be cured of her evil down syndrome. And I literally was like, I don't. I mean, I didn't have any idea how to respond because I knew he really cared about our family and about Penny and wanted to pray sincerely. And I was like, no, no, no, no. Like, this is literally how she was created, and I don't want her to be hospitalized. Like, that part I'm praying about, but not this. And so I think there is a sense of. You mentioned wholeness and health. Biblically speaking, health is essentially being close to God. It's being held in the wholeness of who God is. And that happens, obviously, on a spiritual level. It also happens through community when Jesus heals people, which he certainly does. Throughout the Gospels, what we often see, if not always see, is not. Yes, we see physical transformation that happens. But more than that, we see Jesus returning people to their communities and to themselves and to a relationship with God. And so over and over and over again, healing is literally incomplete without that sense of being connected back to community. You know, we think about, like, Gyrus's daughter, when she, you know, woke up from her sleep or was raised back from the dead, he says to Gyrus and his wife, go, you give her something to eat. Like, it's time for you to reconnect in your care for your daughter. Or when we see the bleeding woman, right in that same story, it's not that she's not. She is not considered the word that Jesus uses for health. He does not use in describing her when she just stops bleeding. It's only once she is kind of publicly named as daughter. Once she is connected back to the community, she can participate in the synagogue again. She can be restored in this wholeness that she's considered healthy. I have a friend who's like a disability theologian named Brian Brock, who has a young adult son with autism and down syndrome. And Brian often says that Adam is the healthiest person he knows because he is the one who has the least filter between himself and God. Like, he's just in. Like, he's there. He's in the presence of love in the way he lives his life. So I think really, the first thing we have to do is ask, what do we mean when we say healthy? Because as many of us who would live in much more typical or even idealized, you know, bodies and minds would say is like, yeah, this is. This is not healthy. We even use that. I use that word to describe my life all the time. And someone looking in from the outside, comparing me to Penny might call me healthy and her not. And yet again, she sleeps better than I do. She doesn't experience anxiety the way I do. I mean, there are lots of things that would say, maybe she's the healthier one here. [00:29:04] Speaker B: Yeah, well, I think it's just an easy. It sounds simple. But then I look at the world and I'm like, no, I don't think it is. But it's just a simple. Like, would I ask the same question of another kid? Like one of, you know, one of Penny's siblings? Like, if. If you're gonna. Somebody's gonna walk up to your family and say, hey, do you want me to do me to pray for Penny to be whole and healed? Would you ask that question of her brother and sister? And if not, then maybe let's not ask it of Penny. [00:29:30] Speaker A: Totally. I have a friend who experienced a stroke, and half of her face is paralyzed. And she's like, the number of times people have, like, put their. Have said, can I pray for you? But have not said how. Like, ask her why or how. [00:29:44] Speaker B: Yeah. [00:29:44] Speaker A: And. And so, like, put their face on her hand, on her face in order for it to be healed. And she's like, actually, I would like you to pray for the short temper I have with my children. I would like you to pray, you know, like, this is not my problem right now. [00:30:00] Speaker B: Yep. Oh, gosh. Well, you talk a lot about families with disabilities not being a burden or a problem. And as outsiders, I think this is where we can come around. You talked about community. Like, how can we. What can we do to communicate to families like yours that you are not a burden or a problem? What should we say and what should we not say when we're interacting with a parent whose child has a disability? [00:30:26] Speaker A: Yeah, I mean, I think, you know, one of the things that many of us feel in that situation is fear that we're going to get it wrong. Like, as you like, we are going to say the wrong thing or we're not going to say the right thing. And. And certainly that has happened, you know, to me, and I have been someone who said the wrong thing. So the first thing I would say is, like, go into it with honesty, humility, and grace, because. And curiosity, like, on, you know, where. Oftentimes what families like mine need is simply people who are willing to be present with us, not to get everything right and certainly not to know everything that we need. But at the same time, there are a couple of things that I've found helpful. One is to not be dismissive of things that are hard and so. And not trying to, like, downplay those right. Where, like, you know, I remember times where it was really hard for Penny to make friends. And I do think that had a lot to do with her experience of down syndrome. And instead of other parents being like, oh, yeah, girls this age, it's so hard. And I'm like, no, like, never being invited to anyone's house. That's what we're talking about. Like, never, ever, ever. And yet I'm not going to insist on that. And so it just creates a barrier. Instead of being curious, being like, so what's going on with that? And. And letting it be hard, saying, gosh, that sounds really hard. But again, we're going to keep showing up. We're going to be in your life. We're going to, you know, maybe we're someone who's going to invite Penny over and we can that. So I think for people to recognize there's, again, that sense of, like, common humanity, but also particular hardships and particular joys so that we can, again, not just say, you know, what's going on, that's hard in your life right now, but also what's good, what's bringing you delight. That is something that we can do for one another. But I do think that a lot of it has to do with. Yeah. Being able to give grace to ourselves and one another when we do say the wrong thing, but also then to keep showing up in love, not in pity for one another, even after that's happened. [00:32:39] Speaker B: Yeah. I feel like I hear you saying not to pretend like, the disability is not there. Like, not to just go like, oh, yeah, school's middle school is hard for my kid just the same as it's hard for your kids. And we can acknowledge, like, it is different. [00:32:53] Speaker A: Yep, I think that's very true. [00:32:56] Speaker B: Yeah. Talking about kids specifically, you know, I am a mom of two daughters. My kids are in public school. Lots of people that are listening have kids. What can we do? How can we teach our kids to help see other kids around them and be able to, like, break through the fear? Or how can we. How can we raise them in a way that they don't even have a fear of someone who's different? Like, what can we do? [00:33:22] Speaker A: So I do think, like, normalizing, what I would call normalizing and neutralizing disability is really helpful. And this will be, you know, again, more extensive than just kids with down syndrome or like, a kind of named diagnosis, hopefully. But when you do know someone who has a named diagnosis, that sense of, oh, yeah, so and so has autism or, you know, down syndrome or cerebral palsy or uses a wheelchair or. So there's some normalizing of that that can happen, especially when we do talk about the language of limitations and gifts. I remember when my son was in a classroom and I assumed that one of his classmates, he was three years old, had autism based on some behavioral stuff. And he came home and he said, aubry cries a lot and screams. And I kind of was like, shooting. How am I going to talk about this? Because I don't want to downplay the fact that that must be hard in your classroom. I also don't want you to put him on a pedestal. Well, you just need to be kind to Aubry, because she is having a hard time. Because that's probably true, but like, how do I not set up some hierarchy again? And so I said, gosh, you know, that sounds like something in your classroom has been. Is really hard for Aubry. Have you ever noticed anything like that? You know, and so we talk about that and I say, gosh, is there anything in your classroom that's hard for you? And he talks about that. And then I say, do you anything that Aubry's really good at? And he says, yes, she's really good at coloring, you know. And I say to him, well, there are things that you're good at. I'm really good at listening, you know, and it's like, okay, you all have gifts and you all have challenges, and not to minimize those or to pretend they're the same ones, but also at the same time not to set up a hierarchy. So that's what I mean by kind of normalizing and neutralizing. Like, this is not some are better than others, or some have it, you know, have it better than others, but at the same time saying, yeah, disability is a real thing. And it can mean that whether it's a classroom or a playground, things are challenging. And I guess the last thing I would say is let's assume that humans want connection. There's a lot of behavior that we interpret as like, oh, clearly they don't even want to talk to me because they didn't ask a question, or they're just rude because they chew with their mouth open. That's gross. Right? Those types of things. It's like, do you think they want to be making you not want to have lunch with them? Probably not. So, like, is there something else going on here? That, that sense of assuming connection, a desire to communicate and be together. That's true for almost every human you encounter. [00:35:58] Speaker B: Yeah. Curiosity is such a key component, I think, in raising our kids. [00:36:04] Speaker A: Absolutely. [00:36:05] Speaker B: For so many things, but especially for this. And I would say too, I think, because my girls are 9 and 11, so we're still a little bit in like the toy. We're moving more from away from toys into like, media a little bit more. [00:36:19] Speaker A: Sure. [00:36:19] Speaker B: But the world has changed and there are so many more opportunities. So even if somebody's listening, it was like, well, there's nobody in my community who has a disability or a child with disabilities, not in my child's classroom. Barbie has done a phenomenal job of including representation. [00:36:37] Speaker A: Yeah. [00:36:37] Speaker B: So we bought my nine year old. She has so many. She has so many Barbies. So We've been able to talk about what does it mean to be blind. She has a Barbie with down syndrome. She's got an. A Barbie that's an amputee. She has one that has vitiligo. So like, even just play one in a wheelchair. And so now she'll make up different stories of reasons why that Barbie could be in a wheelchair. And it's just been a way to be able to have conversations with her without sitting her down and being like, so sometimes kids are born different. [00:37:08] Speaker A: Right. [00:37:09] Speaker B: She generally starts to ask questions, you know. [00:37:12] Speaker A: Well, and I think I also love the idea of, again, shaping the imagination through play, which we know is how that happens. And with something like, yeah, whether it's blindness or using a wheelchair, this sense of seeing how these tools even, like the wheelchair as a tool to get around, rather than as a. People talk about being confined to a wheelchair, as opposed to. This is amazing. This thing gets you from here to there. I mean, including the fact that, like, most of us get in cars in order to go from here to there. Like, most of us use wheels to get somewhere every single day. And so, again, trying not to, like, create all of these stigmas and separations. And I love that there are, as you said, and this is true, again, there are plenty of problems with social media, but there's also a lot of representation that you can have access to through social media, as you said, in addition to these toys. And I'm so glad that we have so much more of that in our world right now. [00:38:09] Speaker B: Yeah, well, and books and movies. You know, there was Wonder came out first, and then we just watched last night. I think it's called out of My Mind or Out of yes, yes, yes, yes. [00:38:18] Speaker A: Which I have read but not seen. But I heard it's wonderful. [00:38:21] Speaker B: Oh, my gosh, it's so good. But get Kleenex. [00:38:23] Speaker A: I know, exactly. [00:38:25] Speaker B: I know. But even that, again, is a tool that parents can use. Sit down. I feel like, as parents, we're more uncomfortable than the kids are. And so if we can sit in our own discomfort, they're going to ask the questions. And it just leads to a way of, like, again, in curiosity, having conversation, and letting them kind of almost figure things out for their own as they watch. They'll watch and they'll relate to, you know, why is this girl being so mean to her or she should have done this instead, and they kind of get to figure it out without the stigma maybe that we've had for decades and decades. [00:39:01] Speaker A: Totally. I remember when we watched Wonder As a family, whenever it came out. So a long time ago now, our kids were pretty young, and we asked each of them, which character did you relate to the most? And it was so interesting to hear because Penny did not say Augie, who's. For anyone who hasn't seen it, the kid with a disability. And one of my other children did, because they. And it was just so interesting to hear the ways they related to different characters. And I don't even remember all the details now, but I just remember thinking, huh, I'm so glad we asked this, rather than just assuming that, oh, you must feel like Augie's sister because you're Penny's sister. And it's like, no, no. Like, there's so much to each of these humans and getting them talking about it. And there are really a lot of good films and books, which has not always been the case. [00:39:47] Speaker B: Right. [00:39:47] Speaker A: Over the past few last 10 years, I would say there's been so much better representation of children and adults with disabilities in the media, and I'm really grateful for it. [00:39:56] Speaker B: Yeah. It just helps us to see things through the eyes of someone else, which I think can only ever lead to more compassion, more empathy, better education. You know, I know. Amy, Julia, I know that you are not a, like, policymaker, but I do want to ask you one question about privilege and disability law, because it feels very relevant in our current timeline. I think disability is something that people really don't think about unless it affects someone that they love. But because, like we talked about earlier, it encompasses so many things. I want people to, like, care more, as I'm sure that you do. So can you speak to some of the current, maybe executive orders, or why it should matter to more of us who are not personally affected? [00:40:43] Speaker A: Yeah. So I do think we've seen a slate of executive orders in recent months that are potentially, if not already immediately harmful to people with disabilities. And there are a couple reasons why that can be problematic. So one is that it is actually all of us could be disabled tomorrow. I mean, there's just a sense of this is really not as rare of an experience as it might seem. Seem. And the protections that have existed in our laws are there for all of us. The other is justice. Right. We might say, well, those are rights that should not be taken away from people. They deserve them. But the third is back to that idea of, like, if we start setting up a hierarchical system where your value in our society comes from your ability to do things, whether that's in a family fast way or in a way that produces money or in a way that is, for some reason valued and other people are not valued, we start dehumanizing everyone. That actually ends up harming all of us. And, you know, there again, we'll see what happens. The idea of the Department of Education ceasing to exist, the implications for that for kids with special education plans and programs are pretty profound. Because if you put the Department of Education under Health and Human Services, you're saying that disability is a medical condition rather than one that has a lot to do with our social, cultural, and, you know, collective understanding of how we treat one another and how we care for one another takes it into kind of the wrong realm, honestly, in terms of how we understand disability. That's just one example of ways in which, you know, people who are the most vulnerable in our population are potentially not just being overlooked, but actually, like, kind of cast to the side. So my hope would be that these things don't, you know, go all the way to that place and that states are able to continue to support people with disabilities and certainly that churches and families do the same. But I think you're right. There are implications for all of us when we start to devalue people with disabilities in our laws and in our practices. [00:43:07] Speaker B: Yeah. I mean, it just shows what we care about or who we care about. Like you said, that hierarchy that God did not ever actually create, he was not like, hey, you guys are going to be the best ones, and then everybody else, you know, fall into place. I could go on and on about that. I will. I will not step up on that soapbox today. [00:43:29] Speaker A: I'm with you. So. [00:43:31] Speaker B: Yes, I know. I know. Well, for churches, specifically, Amy, Julia, I know that it can be being on staff at a church, it can be difficult and tricky when a family comes in, maybe with a child that has a disability, and we want to do everything we can to support them, but either maybe we don't have the resources or we don't have the right people. Is there anything that people can do? Whether it's like, a child, you know, I'm thinking of, like, younger kids, whether it's like a children's worker, like volunteer, or even just other families. What can we do to, like, support people in our church, in our community? [00:44:07] Speaker A: Yeah, that's a great question. I do think that churches can't. Are tricky in the sense that they're kind of unusual. You know, you're generally only showing up there once or twice a week if at, you know, maybe not even that often. You've got A lot of volunteers who maybe don't have the same amount of training as, you know, a special educator or something like that. And so it. I think, again, just to acknowledge that that can be challenging. At the same time, a lot of the research has show that families with disabilities do not want or need a lot of specialized services and programming. What they want is a sense of belonging here and being welcome here. So I heard from a family who had two daughters actually, with autism, and one of whom, when they walked into a new church, had a meltdown and just fell to the floor, like, you know, tantruming, whatever you want to describe it. And the mom got down on the floor with her, and she saw someone from the welcome table at the church kind of running over in their direction and was like, oh, my gosh, I'm going to be asked to leave right now. And this other woman got down on the floor, put her hand on the mom's arm, looked her in the eye and said, we are so happy you are here. And literally she was like, done. Okay, we will be here forever. The fact that my child is screaming and pounding the floor and you are telling me welcome. That's all I needed. Like, sure, maybe we'll have a buddy program. Maybe, I don't know. But you just told me we are welcome here. And. And that is like, it's so important for us just to remember that. That sense of, like, we want you here, we need you here. We're going to look for ways to communicate that and make that true. But we're also going to work with you. If something's going on in a Sunday school classroom and it's really hard for the teacher to know what to do, well, then what supports can we provide? How can we mobilize people to be connecting and supporting you? But the fir. There's a researcher named Eric Carter who's now at Baylor University, and he has created, I guess he calls it, 10 dimensions of belonging. And they're really helpful because they talk about just being present. You know, are people in your church, Are there people with disabilities present in your church? If they're not, it's not, because they're not in your community. Community. So why are they not there? Are they present? Are they known? Are they welcomed? Are they invited? Are they accepted? Are you saying, oh, all the people with disabilities belong in this room over here, but not with the rest of us. Sometimes kids with disabilities need a sensory overload room right where it's like, I need to get away from the bright lights or whatever. So it's not to say there should never be spaces for kids with disabilities, but in what ways are we also saying, we are here together and you belong here. So there's some pretty simple questions to ask and postures of the heart that can be changed that, honestly, I think will be welcoming for everyone. Back to that idea that, you know, if we learn how to value the humanity of people with disabilities, we're actually going to learn how to value everyone in a more rich and full way. [00:47:11] Speaker B: And I think, too, you know, our big thing here is that, like, we don't go to church. We are the church outside of Sunday. It's not just up to the pastors and the staff or even the. The children's volunteers or teachers, but I think for people that are listening, that are part of our church community, again, it goes back to, like, how are you talking to your kids about the other kids? You are allowed to have a conversation of like, hey, what. What is happening when this kid is getting up from the table and maybe not listening to the teacher? And what should. What. Why could that be? And does that mean that you get up and you don't listen to the teacher, too? Or, you know, and I think just having these conversations, even if we don't have all the right answers or we don't think we know exactly what to say, having these conversations with our own kids, specific to, here's what we're seeing in our community, here's what you're going to experience on a Sunday allows them to also then welcome that other. That child in better when there's not a parent or an adult necessarily there to say, like, say this, do this, don't do this. [00:48:14] Speaker A: And I think you're right. Like, so, yes, we can do a lot of those types of conversations, and we can essentially, like, reorient the way we assume order is going to happen in a classroom or in a church, which is not to say order is a really good thing, but there's also a sense of allowing. There's like, disruptive grace also where, you know, you imagine a scenario like that where one child is getting up and not listening and another child decides to come alongside that kid. And so maybe they're both not listening, or maybe one child is learning what it means to actually be with someone who is not typical. And maybe there's something beautiful that's happening there. So trying to have eyes to see what God might be doing and to really experience the blessing of being with one another amidst all of our challenging humanity, I think is a really, really Positive thing. And I mean, gosh, so many families who have children with disabilities feel overlooked, overwhelmed, and alone. And if churches could be places of refuge and respite for them, again, what would that communicate to our entire culture about what it means to be the church? As you said, inside or outside of the sanctuary? What does it mean? Well, gosh, it means to be a place where you are beloved, where you belong, where you are welcomed as you are, where rest and celebration and delight in who you are is something that we're about, where we want to be connected to God in you and to trust that that's true of every individual. We encounter that, like, you've been made in the image of God, and we want to look for that. I mean, there's so much that we could give to so many people if we had the eyes to see how God has made each of us in these particular ways. And again, with limitations and also with great gifts to offer. [00:50:04] Speaker B: I think that in the churches specifically, too, our kids know what to do better than we do. I think it's like, you know, again, that hierarchy. We're like, we're adults. So we want to teach you where we have story after story. We have multiple kids in our church who have a variety of disabilities. And I've heard from our elementary volunteers especially that, like, the normative kids, as I'm air quoting, like, they're teaching the volunteers what to do because they are recognizing. The kids are recognizing, oh, she really likes to sing. Or when she can do something with her hands, then she does better. So the kids will, like, bring her coloring pages or they'll bring her play D'oh. When they see that, she starts to kind of, like, spin out. And if the teachers were trying to control and be like, no, sit down and do that, we would have missed those opportunities. But instead, the kids are recognizing it, and they're teaching our volunteers, our adults, like, hey, this is how we can love this child right where they are and give them what they need. And it's been, my gosh, just so incredibly beautiful to watch. [00:51:06] Speaker A: I was about to say that's just. And so. And it's simple, but it's really beautiful, too. I mean, again, it doesn't require some sort of, like, specialized degree in order to say, I'm just going to be paying attention to who you are and what you need and trying to meet that need without, again, kind of making a big deal about it or shaming you for it or saying you need to be set apart. [00:51:28] Speaker B: Yeah. Amy, Julia, thank you. This has been so helpful. Is there any last thing that you want to say to the people listening about how they can become the church, to the people around them, maybe especially, you know, people with disabilities? [00:51:41] Speaker A: One of the. There have been a number of passages from the Bible that have just been kind of almost lifelong now. Passages for me related to this. And one is super famous and kind of can sound trite as a result of it, but it's in First Corinthians 13. And what I'm so struck by is, you know, Paul starts writing about love and he's just written about spiritual gifts and all this sense of like, oh, you think you're real important because you can do all these different things. And sure, great, go ahead. But then he says the most excellent way is the way of love. And when he describes love, the first thing he says is that love is patient. And I return to that all the time, especially in this whole question of moving quickly and moving slowly and the idea of slowing down in order to love my family and the people around me as they are. I do think in a really busy and distracted world, certainly, I mean, again, it can sound really trite to be like, go be the church. Love people. But for me, it's a real challenge to say and remember, love is patient. So love people today and then again tomorrow and then again the next day. Love people when it doesn't feel inspiring, you know, and really thinking using that love is patient, love is kind. You know, that whole description as a way to guide my interactions with especially the people I meet who seem. Who would be easy for me to disregard, to actually say, what would it mean for me to love you? And that would include receiving whatever you have to offer, not just giving whatever I have to offer. That I think is one way that we can become the church. [00:53:22] Speaker B: Well, thank you, Amy, Julia, this has been so helpful. I'm going to link up your books and your courses and everything in the show notes so you guys can jump over and follow her her and learn from more of her wisdom. [00:53:31] Speaker A: Thank you for being. Thank you so much. It's great to be with you. [00:53:39] Speaker B: As you go through your week. I hope God illuminates someone that you might have overlooked. My prayer is that not only will you see their humanity, but that you'll ask yourself, what can I learn from this person? Be it compassion, empathy, or a check of your own personal assumptions, I know God will lead you when you're willing to be curious. Please share this episode with someone else to help change the narrative when it comes to disability and to join in the reimagining of what health and wholeness really is. Until next time, thanks for listening and keep becoming the church to the people around you.