Becoming Communities of Belonging

Kay >> I’m Kay Daigle and I’d like to welcome you to this episode of the Beyond Ordinary Women Podcast and Video Series. Our special guest today is Amy Julia Becker. Welcome, Amy Julia.

Amy Julia >> Thank you for having me, Kay. I’m really glad to be here.

Kay >> We are so excited to have you. Amy Julia is a writer, and I would call her a deep thinker. She’s a disability advocate. She’s a graduate of Princeton University and Princeton Seminary, where she earned a master of divinity degree. She’s an author of a number of books, including A Good and Perfect Gift, White Picket Fences, Small Talk, and her latest book, To Be Made Well.

So, Amy Julia, let’s begin by telling our audience what happened in your life that really caused you to see the world differently and become an advocate for people with disabilities?

Amy Julia >> Sure. Yeah. Well, again, thank you for having me. And I would say it’s interesting because if I look back on my whole life, there have been multiple moments that have caused me to see the world differently. But the one that really changed my perspective or began a change in perspective in terms of disability came when I was 28 years old.

And my husband I had been married for a number of years actually. At that point we got married pretty young and we were having our first baby. And when I gave birth on December 30th, 2005, two hours later, actually, the nurse called my husband out of the room. He came back into the room and told me that the doctors suspected our daughter had Down syndrome.

I knew very little about Down syndrome at that time, or even anything related to disability and especially intellectual disability. And so I would not say that my perspective changed immediately, but that was the beginning of a really big shift in the way I thought about disability. But honestly, ultimately, it was a shift in how I thought about our humanity, not just in terms of my daughter, but in terms of all of us.

Kay >> I read your book that tells that story, and I so appreciated just your honesty about your feelings and the journey that you went through in that time. So let’s talk about disability and let’s talk about the church. We’re really going to try to focus a little bit on how churches become welcoming spaces for people with disability. Tell us what you see happening in the church that is unwelcoming and how we can change that to make churches more welcoming.

Amy Julia >> Sure. You know, it is obviously each church is an individual space and community. And what I would say is there are some very basic things that can be unwelcoming and those might be architectural so that might be having experiences of people who use wheelchairs. And the only ramp that is available is, you know, outback next to the dumpsters with things pushed against the door that have to be moved, it’s clearly saying, sure, we have a ramp here and it’s going to be hard for you to get into the building.

Right? I mean, so there’s some architectural things that might communicate exactly the opposite of welcome. And those are worth looking at. And generally in terms of statistics, one out of five people says they are experiencing disability of some kind. Most churches probably do not have 20% of their congregation that they would say are experiencing disability. If there are no people with disabilities in your church, then something you’re doing is not welcoming them because they’re in your community.

So I think that is just helpful to think about. Actually, one of the other things that is harder to understand as far as whether it’s communicating welcome or not, is the presence of specialized programing for people with disabilities. Because sometimes if you are a family with someone in your family having disabilities, you don’t want there to be a separate program for one child than others.

Or as an adult, you don’t necessarily want to be segregated from other people because of your disability. You want to be a part of the body of Christ. That, again, is not always the case. You might have kids who have behavioral concerns or sensory issues, and they really need protected spaces. So this is a harder one, I think.

But again, individual churches can actually talk to parents and talk to kids and talk to adults and say, What do you need? How can we welcome you here and make this space one where you belong? There are lots of things. Again, depending on size, you know, you can obviously have people who have large print or if you’ve got people with intellectual disabilities, sometimes having more graphics and graphics alongside words to communicate, things can be helpful.

Having more embodied experiences of worship can be a helpful way to welcome people who are not, as able to read quickly lines of text and really looking for ways to build community that don’t depend upon either everyone having the same physical or intellectual abilities. All of those things can communicate. Welcome. And I guess it’s the inverse of that that might suggest you’re not welcome here.

Kay >> Absolutely. We were members of a large church some time ago, and my mother was, she didn’t have a disability, but she was old enough where walking far was difficult for her.

Amy Julia >> Yeah.

Kay >> And I guess that is a disability.

Amy Julia >> Yeah.

Kay >> I didn’t think of it as actually a disability, but she really couldn’t walk far because she didn’t actually walk enough and didn’t have the endurance to walk very far. And the handicapped parking area was actually not very close to the main area of worship.

Amy Julia >> Right.

Kay >> The door was, yes, close to the parking places. But the door that led to that particular area was not close to the main area of worship. And so really the only way that you could do it was to drive through the front, let her out by herself, which

Amy Julia >> Had its own issues.

Kay >> Yeah. She wanted somebody to walk with her. And if I was with my husband, it was fine. He could drive the car, we could get out. But if we didn’t have him, it was really difficult. And she wasn’t comfortable going in there by herself. And from the front, it wasn’t much closer to the area that we were walking to. It was a little bit closer. And she felt more comfortable, I think. But that just showed me what you think may be a great area, isn’t always. I guess if you talk to people, you might learn that it’s really in the wrong location.

Amy Julia >> And I think that is such a great illustration on so many levels. One that, as you said, and I’ve certainly experienced this with my own grandparents and parents now where I’m like, Oh, they don’t have a disability, they just use a walker. And you’re like, Well, maybe that would be counted as a disability. And it’s just a funny way in which we identify people.

So I like that you identified that. But then also recognizing I did the same thing in my church, I noticed someone who uses a cane having trouble getting in to the church door. So I brought it up at a council meeting and we built a ramp. And then I noticed the same person with the cane struggling to get inside the church door again.

And I finally actually talked to her and said, What do you need in order for it to be easier to get in? And she said, Well, I need a railing in addition to the ramp, you can’t just put a ramp there and make it easier for me. And it was exactly what you were saying. It all worked out because we had put the ramp as it happened in a accessible place. For both the sanctuary and the parking lot. And so we could just add a railing to it. But the fact that none of us thought maybe we should talk to the people who would actually be using this, and that happens all the time. There’s a disability kind of slogan, “nothing about us without us”.

And I think that sums it up really well that we who are not experiencing the same challenges physically or intellectually can presume to know things that we really don’t know. And that is such a welcoming thing in and of itself. How can we make sure that this space is accessible for you? Or in the case of like a parent with a small child, how can we make sure that this nursery or this Sunday school classroom or this whatever we’re talking about is accessible and welcoming for your family?

I’m sure there are things we will learn, and the process of having that conversation is an act of welcome in and of itself.

Kay >> Absolutely. Absolutely. I mean, I like being asked about things that affect me. And of course, people with disabilities would like to be asked how to help them as well. I totally understand that. That’s really helpful. And it’s such a basic thought. What if we ask them? Maybe we’ll get some different answers. Yeah, what else?

And as we think about special programs and how to staff those, do you feel like the people in our church, let’s say that they had a Sunday morning class for some people with disabilities of some kind, mental disabilities, possibly some physical disabilities. What kind of training would the people need in order to really effectively love on the people in the group?

Amy Julia >> That’s a great question. There’s a guy named Erik Carter who’s now at Baylor University. He was at Vanderbilt, and he’s created something called The Wheel of Belonging, specifically looking at questions about people with disabilities in church context. And what I love about the Wheel of Belonging is that he says we think that this is going to need training and you’re going to have to tear down parts of your sanctuary in order to get wheelchairs accessible.

And he’s like, actually, what people with disabilities want are the same thing that everybody else wants. And it doesn’t mean that they are going to be received like you can get to those things in exactly the same way. But they want to be welcomed. They want to be known, they want to be befriended, they want to be loved, they want to be included. They want to be needed, have ways in which they can serve.

Just as so many people in our churches want to be able to not just receive ministry, but actually be a part of the ministry. So again, that’s going to look different from person to person. And it’s not to say, oh, no training needed, just jump right in there. We don’t want to be presumptuous. At the same time, the basics of human connection, kindness, friendship, those are really what people need as far as training, and curiosity.

So our daughter Penny has Down syndrome, which means she has an intellectual disability. It also can involve some physical disability just in the sense that she is less kind of manually dexterous than other kids. But that’s not how it’s going to present quite in the same way. So with intellectual disability, people often assume A) that the person with the intellectual disability can’t speak for themselves. That’s often wrong. That’s a wrong assumption. So Penny knows, she’s now 18, that if someone speaks to her directly, they are respecting her, they look her in the eye.

And honestly, her friends who don’t have that same verbal ability, they also know that someone is giving them respect when they are looked in the eye and someone speaks to them, even if somebody else has to speak on their behalf or they’re using perhaps a communication device. So I think that sense of like make eye contact.

And Penny, when she was younger, she sometimes would get overwhelmed and sometimes she would be overwhelmed because she was upset about something. Sometimes it was overwhelming because there had been a change of plans and that was really challenging for her and she would tend to shut down. So she would just kind of withdraw within herself and not be able to speak. And eventually we learned in our family that when that happened, that actually for her the easiest way to communicate her for herself and by herself was through writing.

And so if I if she was upset about something, I would usually find. And she actually told me this, that I could write, what are you upset about? And she could write the answer, but she couldn’t speak it. That’s the type of thing that you can’t say that’s just not true for every kid with intellectual disabilities.

But if you are starting to get to know Penny and you notice that she’s shutting down instead of thinking, I must be doing something wrong or she must have a problem that can’t be resolved, to go in this case to the mother and say, hey, your child seems to be shutting down. I’m not sure what’s going on and have a conversation. That really is going to go a far away.

That said, last thing I’ll say here, there are definitely resources available for churches. There’s a ministry, I think it’s called “With,” but I might be wrong about that. We’ll have to check. But that they have just developed materials for integrated Bible study. When you’re trying to have a Bible study with intellectual disabilities and typical people in the same room together. And there certainly are others. There’s an organization called Bethesda that’s done Bible studies specifically for a group of people with intellectual disabilities. And there certainly are more resources out there as well.

Kay >> That’s wonderful. Can you provide us with a list of some of the resources you’ve already named and you might name in the rest of this conversation?

Amy Julia >> Yeah.

Kay >> And it’ll be downloadable on our website for those of you listening, as soon as we post this podcast.

Amy Julia >> Sure.

Kay >> As I think about churches welcoming people with disability, I know that there’s a young man in our church. I’m not sure exactly how old he is, but he obviously has a hard time sitting. He doesn’t sit in church and he moves around a lot. And sometimes he makes some loud noises. And I’m just sure that out of a large congregation, there are people who have probably complained and thankfully they have allowed him to stay because you can tell when music is going, he’s enjoying it. I mean, he’s rocking back and forth. He seems to love to be there. And I’m really thankful that he is still coming there.

But I did read an article recently about someone whose husband was one of the pastors in the church. And basically the church told them that their child who had some similar disabilities, I’m not exactly sure what they were, that their child was not welcome in the service. What can we do about that?

Amy Julia >> Yeah. So this goes back to kind of what is our assumption of welcome as a congregation and what’s the posture of our heart, especially towards people who don’t conform to the expectations that we’ve always had. And that is something that we can address in lots of different ways. Some is by doing some teaching. We can teach not just about disability, but about kind of human difference. And what it means to welcome those who are not behaving in the ways that we expect.

There’s, I think, a lot of scripture that can speak to that. And again, trying to do that, I would say with an understanding of mutuality, I think 1 Corinthians 12 & 13 are really helpful here. The idea of the body of Christ, where the nose needs, the elbow needs, the kneecap needs the brain, you know, and we can keep going and recognizing how incredibly different those body parts are and yet how much we all need one another.

So trying to do some teaching along those lines, but then also recognizing that what comes after 1 Corinthians 12 in terms of being the body of Christ and having different gifts is a passage about love that says you can have all the gifts in the world and if you don’t have love, which starts with patience, literally, that list of what love is, it starts with patience.

If we don’t have that, we’re nothing. And so again, I think there’s a role for teaching. There’s also a role for modeling. And so that might be having someone with a disability read scripture from up front or participate in, whether it’s ushering or whatever an appropriate activity is for people with disabilities, but saying not just you have we tolerate your presence in the pews, but we recognize you as a contributor and a potentially even a leader within our congregation.

If that again, not everyone is going to be a leader and it’s fine if that’s true of people with disabilities, but that those opportunities are even out there, that people can be kind of held up and modeled in that way. And then I think sometimes if you have someone who is what would be perceived by others as being disruptive, there are two things that can happen.

One is, from up front, there could be some, again, message not singling out that individual and saying, we’re really glad Justin is here today, even though he makes noises that you might not understand. Right? That could feel really uncomfortable and awkward. But to say we are a congregation that really welcomes you as you are, I mean, to make literally an announcement from up front that says we want to welcome you and we know that sometimes it’s hard to be neighbors to one another. So, again, you’re trying to welcome the person who feels uncomfortable with the guy who’s speaking “out of turn.” So I think that that’s posture of welcome.

Another thing I’ve heard about, especially for parents of children typically on the autism spectrum, who, again, are kind of making noises that you don’t expect, I have heard over and over again of someone in the pew behind them coming over and then expecting that they are going to be chastised for bringing their child into church and instead saying, “I’m so glad you’re here with your family today.”

So there is just a sense of, yes, there might be people who complain. There also can be people who say, “I’m so glad to be in this space with you,” and tell the family that also tell the leadership of the church that because generally the leadership of the church is only hearing from the people who are upset, not from the people who say, I am really glad to be a part of a community that welcomes whoever it is.

So those are just some thoughts on what we can do to really, again, create that environment of welcome from up front, but also from the back.

Kay >> Right, right. And really what we’re talking about here is just loving one another. Isn’t it?

Amy Julia >> Yeah.

Kay >> Just loving the other person for who they are and welcoming them to the church as Jesus welcomed to everyone.

Amy Julia >> Absolutely.

Kay >> That’s what we need to do. And I’ve heard you mention the idea of a place of belonging, and I think that’s a wonderful phrase to use for what the church should be for people with disabilities.

What does that require from us as individuals to help create that sacred space? We’ve talked more about the church, but what about just us as individuals creating welcome for those who come? And you’ve mentioned going over and saying something to the family and that kind of thing, but do you have any other ideas on that?

Amy Julia >> So I mean, again, I would say posture of the heart is where it begins and then practice of the people, right? We have to put those hearts into action. And that is usually going to happen in relationship, not always. But I think about for me, recognizing that there is more. Exclusion is pretty easy to understand, you’re not welcome here, you’re excluded from here. Tolerance, you’re welcome here, but we’re just tolerating you. Inclusion goes a step beyond that in terms of we not only are tolerating your presence, but we’re glad you’re here. Belonging is we wouldn’t be us without you. You matter here, right? You’re not just welcome here, but you matter.

We see you as a gift to this community. Just as much as we see you as someone who needs this community. There’s a sense of mutuality. And that only happens with practice and taking time. And again, that’s true for us with each other when we’re not talking about disability, but it’s certainly true when we are talking about disability, when we’ve got someone in our congregation who does not communicate in the same ways or who does not move in the same ways, who maybe can’t express the same interests or offer the same type of impressive singing voice or something like that.

It might take longer or it might be harder to say, “Okay, Lord, how can I see the image of God in this person and receive from them, believe that they are a gift to me, and receive that gift from them?”

I often think back to when our daughter Penny was actually about three years old. So a long time ago we had two teenage years with her twins with Down syndrome come over to our house. And I was still very much like unfamiliar with the world of Down syndrome at that time. But I had gotten this idea in mind that everyone is a gift and I need something from everyone I encounter. And that is as true of the teenager with Down syndrome as it is of the Nobel Prize winner. But I haven’t necessarily practiced that idea. So I think that my posture, my heart posture was good. I didn’t know how to put it into practice.

And so Molly and Maggie came over and they not only had Down syndrome, they both were on the autism spectrum. They did make noises that I didn’t know how to respond to. They both were still carrying dolls. They were lovely, obedient to their parents, but I couldn’t have a conversation with them. And I really over the course of our night together, at first I found myself kind of sinking, like, oh, gosh, what if I’m wrong? They seem to be people who just need me. They need me to do things for them. Or they need their parents.

Thankfully, we had a couple of hours together, and at this point, our son William was six months old and he was a very wiry, tense, colicky baby who just squirmed and cried for most of about nine months until he could walk. Thankfully he walked early.

Anyway, he was about six months old at the time. And there was this moment in the evening where I walked into the living room and William was lying on the floor, kind of limp as a rag doll, in a way I’d never seen him before. And I don’t remember whether it was Maggie or Molly, but one of them had her hand on him, and she just was sitting with him. And he’s lay there gazing at her as calm as I had ever seen him in his entire life when he was awake. As if peace itself had sat down next to him. And it was one of those things where I was really cool, but I also thought that maybe I was making this up in order to feel good about my ideas of mutuality.

I just said to her mom, I said, You know, Holly, I’ve never seen William be so calm before that so sweet, something like that. And she said, Oh, yeah, that’s Maggie’s gift. And I said, What do you mean? And she was able to tell me of multiple times in Maggie’s life when she had seen someone in the room who was upset and gone and put her hand on them, whether it was like an elderly woman or a young person, a baby in this instance.

And that her presence was peace. It was. And it was just fascinating to me because it was like I needed that posture of my heart. I needed to be looking for it. But it also was not going to come quickly and it was not going to be something that was valuable in this impressive way. But truly, it was a gift, and it was one her mom knew about.

Kay >> Wow. I love that story.

Amy Julia >> It was really a beautiful, truly transformative moment for me. You asked about that earlier in terms of I want to believe that this is true, now I believe it’s true. That every person I encounter has a gift to give and they need something from me. This is a mutual thing. I knew I liked that idea, I wasn’t sure it was true until that moment.

Kay >> Well, I think that’s just a wonderful idea for us to think about as we encounter other people. Your idea of there’s a gift here that I need to search for, that I need to watch for. What gift is God given this person that they’re giving to the rest of us in the world? That’s a wonderful mindset to go into such conversations, I think.

As a parent of a child with disabilities, how else can the church or just those of us who want to help in some way, how do we help you as parents?

Amy Julia >> That’s a great question. The thing that I think is kind of universally hard about being a parent of a disabled child comes down to time. So sometimes there’s hardship that has to do more with there’s real pain that this person is experiencing in their body. And that’s a really hard thing as a parent to know you’ve got a child who’s in pain. Or sometimes the hard thing is that they’ve got a specialized diet or serious allergies, so there are lots of different hard things that can happen.

But I would say pretty universally it takes more time to be in a disabled body or mind than to be in a typical one. And so that sense of helping out when it comes to providing time, that is one thing that I think we can give each other in general, but certainly we can give to our friends who are experiencing disabilities. And within that, again, I’ll go back to curiosity in terms of just asking, what are the particulars of a situation. But for the most part, I would say time.

And then the second thing I would say is friendship. Yes, sure, there are parents who need that friendship. But kids with disabilities and adults with disabilities even more so actually, loneliness is really a real problem, a real hardship. And it can be intimidating for those of us who are in more typical bodies and minds to think about what it would mean to be friends with someone who’s disabled. And yet that is a gift we can give. And as we were just talking about, it will only be a gift that we receive as well because we get to know this person. But the gift of friendship would be a tremendous one. And honestly, anytime someone gives friendship to Penny, they’re ultimately essentially giving it to me as well. So yeah, time and friendship are what kind of spring to mind.

Of course, there are seasons if someone is experiencing their 27th surgery where bringing a baked chicken is also really helpful. There are other ways to show up.

The last thing I’ll say is there’s a real distinction that’s important, I think, between compassion and pity. And people with disabilities and their families do not need pity. Pity is like a distancing mechanism that basically says I am so glad I’m not you. I feel bad for where you are, but I’m not there. Compassion is very different. It is I want to be with you where you are, even if that’s a painful place. So we, I think, need compassion, but we don’t need pity. And that, again, is true of most of us as humans, right? That we need compassion in the midst of hard places and people who are willing to enter in, not with easy answers or theological grids that tell us what we’ve done wrong to get us to this place or even what we’ve done right to get us to this place. But really just a sense of I’m here with you in the same way that God wants to be here with you.

Kay >> Yeah, I love that. That’s a really good distinction. I appreciate you’re adding that in here. I think that’s really important.

Well, I highly recommend Amy Julia’s books and of course, the book about her journey as the parent of a child who had been diagnosed with Down syndrome is a very honest and really it’s just a lovely book. I highly recommend it. Its name is A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. And it was a delight for me to read that book. And I just completed your latest book and I wanted to mention that before we go, To Be Made Well. I would call it a really thought provoking read, at least for me. And I admit, I’m still processing it and I’m going to go back and reread parts of it again. Would you tell us just a little bit about it?

Amy Julia >> Yeah, absolutely. To Be Made Well in some ways is a book about healing, but not in maybe the ways we might expect. Right? So this actually happened early on in Penny’s life. Someone pointed out to me that every time we come to gospel narratives about healing, we tend to focus on the miraculous aspect of some sort of physical or bodily transformation.

But they said what’s also always going on is that that person is being restored to themselves, to God, and to community. In fact, probably the least important part is that physical transformation. But the most important part is that restoration. So I started to have a lens on different stories in the Bible and really in thinking about healing more broadly for my own life and in people around me that was not just about feeling better in my body, but actually about what does it mean to be healthy and whole.

I have a friend named Brian Brock, who’s a theologian of disability and has a son with Down syndrome, also, who’s had a lot of different medical and health challenges throughout his life. And Brian says of his son, Adam, that he’s the healthiest person he knows because he lives most fully in the presence of God.

It was those thoughts and conversations that I think, as well as some personal experiences with back pain, that led me to write, To Be Made Well, to ask the question of what does it mean to understand Jesus as a healer? So what is the nature of healing? What are the things that keep us from experiencing healing in our mind, body, spirit and community?

And what does it mean, especially for Christians to participate in an ongoing work of healing that I believe God wants to do in the world? As you know from having read it, there’s one biblical story that kind of runs through the entire book. But that story is like a guide into those topics of what is healing and what keeps me from healing and how can I participate in healing.

Kay >> Well, I very much enjoyed the book, so I wanted to give you a chance to tell people about it because I feel like a lot of people will be interested, and there’s certainly a connection with people with disabilities with your book on what it really means to be well. I really appreciate the book, and I’m really so glad that I found it and read it along with the other book.

And I’m very interested in reading the one on White Picket Fences which is about racial division, right?

Amy Julia >> Yeah. I mean, it again, you know, disability, as you can tell, is kind of my entry point into lots of different topics. But I think for me, as someone who came from married parents and is white in a country that prizes whiteness, and had access to education and all sorts of kind of social stability and what we might call social privilege, when I had a child with an intellectual disability, I realized she was both born into that same place and excluded from it.

And so that got me thinking a lot about not only what does it mean to be excluded, but also what is unhealthy about this place, this position that I find myself in as a person with social power. So thinking again about that sense of mutuality and what it means to break down social barriers, not so that other people can necessarily come in and be exactly like me, but so that we can actually give and receive and maybe make a new way forward in the world. We live in a time still, I wrote the book six years ago, something like that.

But we still live in a time of great social division and the thought of being able to respond to that with hope, with a mind towards healing, rather than with cynicism or despair or anger. That was really what I wanted to explore in that book was what does it mean, especially as people of faith, to be able to actually build bridges and break down barriers rather than create more of them? Yeah, as we live in our current moment.

Kay >> I look forward to reading the book. I really appreciate that. I think our audience by now can see that I’m right, that you’re a deep thinker, and all of these books are built on some of those thoughts, and you’ve shared them all with us as you write. I really appreciate that.

You can find Amy Julia’s website at AmyJuliaBecker.com, and Becker is B-e-c-k-e-r. And all of her books are listed there, and she has a podcast. And many of you will find that interesting, and you can connect with her there.

You can also find more of our podcast episodes on our website that deal with loving others, caring for other people at beyondordinarywomen.org. Click the resources on the menu and go down to Caring Well to browse that topic and other areas where we need to care well for others as Christians. And you can also browse all of our resources there.

So thank you again, Amy Julia. Is there anything else that you’ve thought of that you want to add before we leave?

Amy Julia >> I think the only thing I will say is just to kind of underscore that the desire to care well and honestly a willingness to make mistakes in doing that, there’s courage in that. And to say I’m sorry when that’s what’s happened is really we need that so much more than some sort of perfect plan to incorporate people with disabilities. Really, what we need is, just again, time, friendship, curiosity, gentleness, compassion and anyone can offer those.

Kay >> Well, thank you for those words of encouragement. I think we all can do those things, and it won’t take any special training and it won’t take any special knowledge to be a friend and to love other people. So thank you again.

Amy Julia >> Thank you.