From Inclusion to Belonging

What if “all are welcome” still leaves people standing alone? Statistically, chances are high that either you or someone close to you lives with a disability. Yet far too often, people with disabilities find themselves pushed to the margins. This special episode comes from The Leader's Journey Podcast, where Mac and Josie open up about parenting their son Griffin, who has Down syndrome and likely autism. His life has forced them to rethink ability, achievement, and what church is for.

They further explore how ableism shows up in ordinary moments: the rushed band tryout, the inaccessible bus plan, the Sunday greeting time where some are always left out. They talk candidly about the limits of inclusion, the harm of disability blindness, and why pity and programs can’t create the mutuality needed. Instead, they point to Jesus’ pattern of noticing, honoring dignity, and disrupting the crowd’s anxious order—and what that means for pastors, volunteers, and anyone who wants their community to reflect the kingdom.

If you’re a tired leader wondering how to start, take a breath. You don’t need another ministry to manage. You need a fresh lens and an asset-based posture that surfaces the gifts already in your congregation, especially from people with lived experience. Practical ways to guide attention, reduce anxiety, and build real friendships are shared. Along Mac and Josie's journey, Griffin has taught them that persistence opens doors, belonging transforms rooms, and joy can be loud, off-beat, and exactly what the body needs.

If this conversation resonates, follow the show, share it with a friend, leave a review, and be sure to check out The Leader's Journey Podcast for more great content.

Transcript

Welcome And Series Setup

Mac 0:02

Welcome to Praxis, a podcast where we explore how to practice and embody the way of Jesus in our everyday lives. Thanks so much for taking the time to listen. Today we're starting a short series on disability in the church, and I want to encourage you not to tune out. Did you know that roughly 17 to 20% of the population lives with a disability? That's far more people than many of us realize. Statistically, chances are high that either you or someone close to you is part of that number. Yet far too often people with disabilities find themselves pushed to the margins. In a culture that tends to value people for what they can do or how much they can achieve, those with disabilities are frequently overlooked or perceived as having little to contribute. And while our society has made real progress toward greater inclusion, which we want to celebrate, we're convinced that inclusion alone is not enough, especially in the church. So in this series, we're exploring how to move beyond mere inclusion toward becoming communities of genuine belonging. And we're going to kick off this series with an episode where my wife Josie and I share a bit of our story as parents of a son who has Down syndrome. So let's get into it.

Josiah 1:28

And I'm Mac. And we are missing someone. We are. Normally this is a three-person intro.

Mac 1:36

Yeah, as you were just saying before we hit record, um Katie has one of those, she has a presence that's felt when she's not here in a good way.

Josiah 1:45

Yeah.

Mac 1:45

Um, but yeah, uh, Katie had a baby boy and is on maternity leave, Jack Henry. I went to their house uh the day they got home from the hospital to bring over a meal. And you just forget. I mean, I have a 16, almost 14-year-old and 11 and a half, and you just forget. Like I had this moment where I'm like, this human, this is a human being, so tiny. Yeah. And it just came out of your body. Like, this is insane. It's just kind of this. We forget how incredible that is.

Josiah 2:18

Yeah, it's pretty crazy. It's pretty crazy the um just to watch someone like they they walk through pregnancy and there's so much, there's so much preparation. Um, and you kind of forget, like, it's not just uh their body changing, there's an entire another body inside them.

Mac 2:32

Totally. And they're so they're so helpless. Uh that's the other thing that stood out to me. And coming off of Christmas, just like the fact that God came in this helpless form, uh, felt like it connected some dots for me in a fresh way. Like I knew it, but now I'm experiencing it. Like this baby is completely reliant on uh, you know, assistance in every way, including like holding up your head. You can't hold up your head, you need to be like you know, propped up the entire time. And yeah.

Josiah 3:01

Yeah, well, I'm happy that they get to um, you know, have some extended time to begin that journey. I mean, they're this is their fourth kid, so yes. This is more like the end of their journey, but well, Katie the last leg.

Baby News And The Vulnerability Of Life

Mac 3:14

Katie, if you happen to listen to this episode and know that you're missed and you're missing out. I know you have FOMO, so yes, you are absolutely missing out on all sorts of fun. Um, speaking of FOMO, um we are headed into a series uh on disability in the church and how we can move from mere inclusion to becoming communities of belonging. And in just a moment, you're gonna hear a conversation that took place this past summer um over on the Leader's Journey podcast between Trisha Taylor, um, my wife Josie, and myself. And so, first of all, let me I want to thank my friends at TLJ for allowing us to release this as part of Praxis, because it originally aired on their on their podcast. But before we jump over to that, I thought it might be helpful to do a bit of orientation to this topic. Um and I want to address maybe some discomfort, maybe some intimidation and a learning curve many of us have around this conversation of disability. And Josiah, you know, as we were thinking about this series a little bit, you shared a little bit just about how it's a little intimidating for you. And I imagine, you know, you're not an insider, so to speak, with this conversation. So it can feel like I don't, I don't really, I don't want to say or do the wrong thing. You know what I mean? There might be some apprehension. And yet I think many of our listeners might feel that way. So I actually think your voice is essential in this conversation. Can you feel that out? Like having been a parent of a son with Down syndrome for like over a decade, I'm I I I've forgotten how that might feel. So Yeah.

Why Disability Belongs In Church

Josiah 4:54

Yeah, I think I think it's just worth mentioning that it's normal to feel um to feel some apprehension when diving into a topic you don't know anything about. So um especially when it comes to people, as opposed to just a topic. Like if I want to learn a lot about a topic, it that can be exciting and I can I can have uh an increased curiosity to like learn a new topic and to find out different facts about different things and learn some some learn something new. But I think this topic specifically, um, because it is so close to people and um and the fact that it is so uh it's very nuanced and um can be uncomfortable to to step into because we're not just talking about like we're not just talking about people um who might struggle with a certain type of thing. We're talking about people who are very um we're vastly different from the way m we might experience day-to-day life. Um, it can be intimidating to pick up as a topic. And so mud so many of us are so used to using that as an excuse to put it out of our mind and just focus on our normal lives. Yes. And I'm noticing uh the fact that uh although that is a normal way to experience it at uh on the outset, as people who follow Jesus, um, there is a vast world of people and culture. And this goes for many topics that um that that we are completely tuned out to and there are they are people that God's heart is very close to. Yeah. And I don't want to um I don't want to let my apprehension make me miss out on something so important.

Mac 6:49

Yeah, and that's probably my biggest fear in uh doing a few episodes on disability is just that it may not pique people's interest. You know, they might go, oh, that's not, I don't have uh a sibling or someone in my family that's disabled, so this doesn't matter to me. And I want to go, but but hold on. First of all, I think it is more it hits closer to home than most people realize. We were just talking about uh Katie's baby. Like we all exist on some spectrum of ability, and when we come into the world, we're totally helpless. And at the end of life, Josie's grandma just passed away. She was literally needing care around the clock. And so at some point in our life, we're gonna return to more limited ability than we already have. And of course, that's different than like a diagnosis, a diagnosis like Down syndrome or autism or something like that. But I'm just gonna name there, there's a strong chance that at some point you or someone in your family, someone you know, whether it's through an accident or whatever, might end up with a disability and all of a sudden it shifts your worldview to go, they still matter. And why do we live in a world where everybody walks past without noticing or thinking they have anything to contribute? Yeah.

Josiah 8:07

Yeah. And we often, I would, I would also name that in our society, in a modern world within a democratic society, we do, I think we've gotten so used to offloading the responsibility for certain um for certain acts of justice to be done with the government. We sort of we have this mindset, I'll elect if these leaders would just get their act together, we could come up with a program and everybody who's marginalized will be helped. And although I'm thankful, and I'm I know many people are for some of those programs in the church, I I feel a sense of conviction that um we need to have we need to be more on the forefront of that, not on the outside looking into it.

Mac 8:53

That's right. I mean, God's kingdom vision, God's kingdom is a place where everybody belongs in all of its diversity. And maybe as we kick this off, as you'll be a conversational partner, you know, throughout this series, I will just tell you there will always be a grace available for you and other people who are leaning in and trying to join the conversation and the work. Like whenever we're starting something new, we're not good at it right away. So I have so much grace for people who are genuinely trying to lean in to understand, to engage if they do or say the wrong thing or, you know, no big deal. Yeah. Um, and I think that it's really important that we actually have multiple perspectives involved in this conversation, including those who are intimately impacted by disability as well as those who are a little bit more distant from it, so that together we can figure out what this actually looks like to lean in and pursue God's kingdom vision of a community of diversity that reflects love and belonging.

Apprehension, Curiosity, And Learning To See

Josiah 9:53

Yeah. I did have a, as I was reflecting on this, I realized I I think I have more experience with this topic than I gave myself credit for. Um, I remember in high school, uh in high school, you know, it wasn't a long time ago, but it was in a in an era in which um the people who were disabled um were very much separated from the rest of the classes. You know, we would sell like, oh, those are the special ed kids, and they had a totally separate um schedule, they had a separate room, and they were very much uh isolated from the normal populace. And I remember um we had uh a kid that would went to our church on Wednesday nights. His dad was um a pastor in another um in another part of town and uh was friends with my dad, who's also a pastor. So he would come on Wednesday nights. His name was Colin. Um, he had a uh a genetic uh defect called um CDLS, if you're if you're familiar. Anyway, um he was the sweetest kid. And but I remember uh feeling on the outset when you're around someone and their behavior is unpredictable to you, that's like there's this awkwardness and this discomfort where you're like, I'm not, I'm not quite sure what what to expect. And so it's easy to sort of dismiss someone or or to like put it out of mind and try to avoid that's sort of the natural inclination. But I learned that through um through high school, um, when you start seeing someone differently, not only do you start seeing through their eyes. So now at the lunch table, you'd see them all sitting alone. So often me and my sister would go and sit over there by uh Colin and Michael was another guy who was fun. But these people that on the at the beginning, when you're introduced to this era or world, that you're like a little uncomfortable, it's unpredictable. I don't quite know how they're expecting me to behave, and I definitely don't know how to expect them to behave. Um it starts out there, but then when you push through some of that, you realize like these are really, really awesome people. Totally. And Colin, if if you knew Colin, um, actually found out that uh Joe Hince knows Colin. Oh, that's that's come from something before, but he's a friend of ours. But anyway, yeah. You start realizing that these are not only these aren't just like people with disabilities, these are people. And they're they are um they ended up being dear friends. And you start looking forward to their presence and realizing like, oh, they have Colin had this innocence about him that I don't think exists anywhere else. Um, and ended up being a very dear friend throughout high school.

Mac 12:41

I think you just named something that might be helpful for our listeners, is um, in terms of kind of pressing in, you acknowledge that I have some discomfort because uh individuals with disabilities often don't meet our social norms. Yeah, they do things that are different that kind of violate some of those, and that creates anxiety in me. That uncertainty of what are they gonna do and how are they gonna behave um makes me anxious or nervous, and then I'm apprehensive to like lean in. But once you lean in and see things from their perspective, um, they're still gonna violate those social norms. I mean, my son Griffin does all the time, but actually it's normal for him. It becomes less unpredictable. I mean, he's still unpredictable in some ways, but like, but like uh that's not the the primary lens I'm thinking through. I'm not primarily relating to my son out of uh meeting social norms, but I'm meeting him on his terms. And it sounds like as you did that with Colin, it just opened up a whole world of friendship and knowing and being known that is actually fruitful.

Josiah 13:44

Yes, yes, so much laughter, and he never didn't have a smile on his face, and so many fun stories. We would go out to Culver's as a group after Wednesday night church, and he always went, and you're always like helping him count his change at the counter because it's taking forever, you know. Like those it it just became a fun dynamic. Yes. Anyone who grew up in that era with us, like all like Colin made an impact on our lives. Yeah. And and that would but would have been completely missed out on if you just if you can't push through some of the some of the awkwardness. Yeah, yeah. I I think that I would have an encouragement for anybody listening to this episode. When I went back and listened to your conversation uh with Trish and and Josie, the biggest realization for me was that um Griffin's story defines so much of your story. And if if I put myself in your shoes, if someone didn't understand how much his disability and his and his life affects yours, how much of your world is defined by having to navigate so many things. Um, I think that if I were you, I would feel very unseen. And if if you are gonna feel that way, I imagine that many other people feel very alone and very isolated. Um if we as followers of Jesus aren't willing to acknowledge, not just acknowledge, but like what does it look like to hear someone's story? Um, it just opens up there's just an entire world that you exist in that I don't. And if I don't take the time to acknowledge it and try to understand it, I would imagine that even trying to be your friend would be difficult because there's so much of you I don't even understand.

Mac 15:32

Yes, I think that is capturing something significant and connects to the way of Jesus. I mean, one of Jesus's uh we've mentioned this before, but one of Jesus' primary miracles was the healing of sight. And the gospels are regularly calling attention to when Jesus was traveling or doing different things, they'll note he saw that person. And that then motivated the seeing is what mobilized him to take action, to move towards the person. So maybe that's just a good place to end as we transition into the into the conversation to go, hey, this is about first and foremost our ability to see the things that Jesus sees and get on the inside of it a little bit more. Yeah. All right. Well, enjoy this conversation and God bless. We have to shift from seeing these people as people to be served, as as friends to embrace. And not just that, but they're a vital part of the body of Christ who have gifts to offer and contribute and are part of our interdependence as a community to fill out what God is doing among us.

Friendship Beyond Social Norms

Trisha 16:42

I'm Trisha Taylor, and this is the Leader's Journey Podcast. And today we get to explore a part of life and leadership that we don't always make time for, um, that we don't always know exactly how to talk about. And that is how we think about, relate to, include, and even more than include people with disabilities, um, those whose disabilities are lifelong. And I think I also want to stop and say just the reality that almost all of us at some time or another in our lives will find ourselves grappling with disability in one way or another. So um this is not for them, this is for us, but we also want to think about how we're creating systems that work for all of us. And so um back in uh November of 2023, we had a conversation with Ann Cansfield about leadership and neurodivergence, and we just barely scratched the surface of that, and we are just going to barely scratch the surface again. But um toward that end, I am really, really glad to have Matt McCarthy and Josie McCarthy here for this conversation. So, Mac um is the lead pastor at Cross Point Community Church in the suburbs of Milwaukee. If you're a listener to this podcast, you already know Matt. He is already he is on our team at the Leaders Journey and is a coach and a consultant and all the things. And we love having Mac on the podcast. And this time he brought Josie, and this is just so much fun. Um, Josie is a nurse who ICU nurse for like 18 years, something like that. Now I'm a recovery nurse after day surgery. Um I'm just really excited to have both of you here. And so welcome.

Mac 18:48

Thanks, Tricia. It's good to be here. Yeah, Josie is the special edition. You guys are in for a treatment.

Trisha 18:56

Well, what I love is that I didn't really know Josie till just fairly recently. And now I just I mean, I want to have this conversation, and it would be fun to just sit around and talk. So yes, absolutely. We had a great time. Uh, but this is a conversation that comes out of your own story. We've been talking about it for a little while. So I kind of just want to turn things over to you and ask you to tell us why we are having this conversation right now with you.

Josie 19:31

Yeah. Well, I can kind of start us out. Uh, Mac and I have a son with Down syndrome. Griffin is 10 years old. And I guess we'll just start with our story. Um, we did not find out that Griffin had Down syndrome until the day he was born. But what kind of makes part of our story a little bit more intense is that leading up to his birth the year before. Mac and I experienced a miscarriage. And it was painful, you know, both physically and emotionally. So when the doctor gave us the clearance that we could start trying to have kids again, and Griffin is our third, our third son. So uh when we got the clearance, it was it was very difficult. Um, and I was pretty anxious. So I began to pray, you know, before we even conceived him, I began to pray through every body system from head to toe that we would have a healthy uh child. And I even specifically prayed against any genetic abnormalities. Being a nurse, I I got pretty crazy with this, even uh praying through every body system. So uh it was a great pregnancy, you know, really nothing out of the ordinary. We chose not to have any genetic testing because we had two healthy children already. And on uh, you know, a couple weeks before his due date, I was 36 and a half weeks, I went into a fast and furious labor. Um, and my water broke at home. So we get to the hospital and it was only a couple hours in length total. And it was pretty intense because his heart rate was decelerating and I was on my hands and knees with 100% oxygen. And um I definitely was minutes away from having an emergency C-section. But thankfully, he was born naturally. And the minute he was laid on my chest, I knew something was wrong. He flopped on my chest, like didn't have any tone in his muscles. And so I'll kind of hand it over to Mac to describe how that was for him.

Introducing The Leaders Journey Conversation

Griffin’s Birth And Diagnosis

Mac 21:49

Yeah, I don't think that um right after he was born, I I wouldn't say I was in the framework like something's clearly wrong and we need to figure it out. It was more after we had received the diagnosis that I began to like, oh, that's what I was noticing there. But my my uh mom and our boys came to visit. Uh, I think my dad was out of town, and so we we got to visit, and and pretty much right after our immediate family left, I remember Josie was holding Griffin sitting in the uh on the bed, and I was standing next to her, and the a team of doctors and nurses came in and sort of surrounded us, and they had very serious looks on their face, faces. And they just kind of came out with it. They said we were noticing, you know, characteristics consistent with Down syndrome. And there's really nothing that prepares you for that kind of a moment. It it's still, when I think about it, felt really surreal. I remember uh Josie looking down at Griffin and then looking up at me with tears in her eyes. Um, I remember the the room sort of it got cloudy almost. Like I like they're still talking, they're still saying things, and I'm just kind of standing there. And the first couple weeks were a major blur. Uh, but I do remember a few things. I remember crying a lot, which was interesting because I'm not a big c uh crier. Um I remember that first night, I I didn't sleep much. Um, but the one time I fell asleep, I had a really unusual experience. It was I I sort of like re-encountered or had a dream of all the different people that had Down syndrome I had met in my in my life. So a guy named Jerry, I remember from when I was a kid, and um I had a professor in grad school whose daughter had Down syndrome. And it was almost like my brain had kept a file of like all these experiences and opened it up. And I woke up like in a panic, uh, just uh in a sweat, uh breathing uh really heavily. And I just remember really being flooded with anxiety and uncertainties. I remember thinking, I'm I'm not a patient person. This is gonna require a lot of patience. I'm not there's some dads who crush it with the toddler stage. I didn't consider myself to be one of them. Now I have a child who might be a toddler for the rest of his life. Um, I'm an incredibly independent person. Now I have a child who might be dependent his entire life. Um, how are we gonna afford this? You know, I'm a pastor. Um will be will we ever be empty nesters? I was really looking forward to that stage, you know? Um what will Griffin be like? And I just remember um I remember really feeling overwhelmed, but also noticing that when I just simply held Griffin and looked at him and embraced him, a lot of those anxieties and fears uh dissipated. It was almost as if um the stories I was telling myself about disability uh began to fade as I just became present to it. And of course, that was 10 years ago. And I would tell you, it's complicated. Um, our lives have been incredibly enriched by Griffin. Um, he's one of the greatest gifts in my life. We laugh harder than we've ever laughed before. Um, our joy has multiplied, our love has been refined, apart from you know, achievement or athletic ability or good looks. And my goodness, there's not a day that goes by where we're not dealing with significant challenges and complications of having a son with a disability. Um, he's got uh, I mean, so many doctors, so many PTEs, so so much going on all the time, behavioral issues, all of it, that it's really hard to. And we have to live in that tension.

Josie 25:42

Yes. Yeah, and I would add it, we both went on our own journeys of accepting his diagnosis of Down syndrome. And for me, right after he was born, they do a blood test called a fish assay. And they it's about five days from when they take the blood to when they get the results back. And in my heart, I was like, Well, I know God has the power to heal this. So even if Griffin does have Down syndrome, I know in within five days he also may not. And so I really like had my heart set on that in five days, even though he might have it now, God will heal him from Down syndrome. And when the results came back positive, I was devastated. I was like, I had the faith. I have faith, and and Mac has faith. Why, why hasn't he been healed from this? So, over the course of the following nine months, I I went through, you know, therapy, a lot of things, and uh ultimately heard from God and that he is a gift. And this led to being able to accept him. But it was really a struggle for me. And I know that um we each kind of had our own journey on it, but it is definitely I never anticipated being part of this club that we now find ourselves in, the disability club, which we I didn't want to be part of it. I didn't, but here we are.

Trisha 27:12

Yeah, you didn't apply to join. And no, it's it's just it it's clear that both of you were in a grieving process, understandably. And I think of grief as just that natural thing we go through to clear out space for reality. And so it sounds like in different ways y'all were both doing that. Um and it it seems like both of you came to a place maybe early, maybe maybe later, where it was just a sense of this is this is what we have now. Yes, and the easy parts, the hard parts, the parts that feel like blessing, the parts that maybe are blessing but don't feel like it, and then all the other things and all of that mixed up together. Yeah. You mentioned, Josie, that your first faith go-to was God heal him. I mean, absolutely understandable. Yeah. And then at some point y'all y'all had to move toward something like how do we understand where Jesus is in this story. And both our story, and then I know you also think about that in terms of of your work now being in the as you said it in the club, um, and and figuring out where Jesus is in that part of the story as well. Yeah.

Mac 28:44

Yeah, I think um I had Josie had more work theologically to do to understand Griffin's diagnosis in light of God's agency. And um, I had done a lot of work before then um in both uh college and grad school, just theologically. And so I didn't, I didn't, I don't feel like I really uh I had a framework for understanding that this happens and now we're part of that. And for me, it didn't have a sort of a disruptive uh dynamic in terms of understanding God or how God was at work as it did for Josie. Um, but I think watching Josie and giving her permission to be where she was and and uh encouraging honesty um was an important part of her journey. And I think that when we come to God honestly and in our frustration, in our anger, um, God often meets us there and is very gracious. I remember a particular morning, um, we do like pancake breakfast on Saturday mornings, and we were cleaning up, and there was a song playing on our uh, I don't know, on our podcast or whatever on our our whatever we were listening to doing.

unknown 30:00

Yeah.

Mac 30:01

Yep. And uh the refrain on the song, it was a John Mark McMillan song, and it talked about how God was good. And Josie was standing over the sink and sort of like dropped a plate more forcefully than I she, you know, it was kind of like startling. And she's like, Yeah, right, God is good. Then why didn't He answer my prayer?

Josie 30:20

Yeah, yeah.

Mac 30:21

And as a pastor in that moment and a husband, I was kind of like smiling, like, we're doing it, like we're getting honest.

Josie 30:28

We are doing it.

Mac 30:29

But it was this clear moment where she was like, I was like, that's it. Like, that's it. You're getting at this core question you have, and God is big enough to sit with that question with you. And and I think God met her in a way that was uh completely refamed reframed things.

Trisha 30:46

Josie, what was that moment at the sink like for you?

Grief, Faith, And Reframing “God’s Goodness”

Josie 30:50

It was honestly, I was surprised by Max's response as you were, Trisha. I I really it and it what it did is it gave me freedom to be where I was, permission to be where I was, so that I could really reckon with our reality. And I think my deep-seated belief was if you if you are faithful to God, if you do all the right things, although I wouldn't have said this out loud, but you know, this was my core belief, then then God will, you know, respond in faithfulness to you and you will get what you ask for. Almost like a genie in a bottle. If you do things the right way and ask for the right things, then they'll be granted to you. And I was a rule follower. I did everything correct in my pregnancy. I didn't have lunch meat and I didn't, you know, like all the little tiny nuances that no one ever pays attention to. I followed the rules and then I prayed with faith. And so I think it really shattered me in a way that this could happen to me despite having all of my ducks in a row and being prepared, you know, for bad things to happen by praying against them. And so in that moment, I think the love and compassion that Mac gave to me was sort of a picture of how Jesus is towards us in that he can handle my honesty, and that that is not the issue. The issue is is me uh accepting where I really am and accepting that that is how I operate and letting God transform me in that space.

Trisha 32:36

And so both of you had to start thinking about so how does Jesus see Griffin? And then over time, how does Jesus see individuals with disabilities? Maybe more generally, and what does that have to do with us?

Josie 32:55

It kind of starts going back to that moment in the delivery room a few hours after Griffin was born. Um I was holding Griffin, and this team of doctors and nurses came in and they said to Mac, you might want to sit down for this. And I was holding Griffin and I felt like this incredible weight in him. Like I have a huge, you know, he was only six pounds, but it felt like a 50-pound weight on my lap. And they, when they said he has every characteristic of having Down syndrome, this was a pediatrician that had been our other boys' pediatricians. We had known him for years and years, and he was nearing retirement. And I looked at him and I said, Dr. Ulery, you are wrong. My son's perfect. And but at the same time, I knew I couldn't ignore the physical symptoms and signs that Griffin was exhibiting. And so in that moment, it was like my gut was telling me, no, he's right. And it's this huge weight that's now been given to you, a huge burden now that's been given to you. It is um in in the days after his birth, they give you so much information that's overwhelming. He's more at risk for diabetes and cancer and um heart disease, and you know, the list is like a mile long. And so all of a sudden, I go from having, you know, just having this transition of my third son being born to, oh, and you're gonna have a child who is dependent on you for your whole life. So in my mind, the world as I knew it was over, like my life was over. Um and so I for months I asked God to speak to me about this, about my disappointment, about my frustration, about um his agency in it. If you are good, why did this happen to me? And I would try time and time again to hear from him and nothing. I just felt radio silence. I felt all alone. And so it was out of that that this moment came in the kitchen at the sink when I said, Well, God isn't good. And it was honestly like an unconscious thought. I don't know that I really thought that, but it was just sort of under my breath and it kind of revealed this moment. So after that, I was able to specifically pray, like, God, what do you want me to know about this belief that I have that you really aren't good because you gave me a son with a disability. And I was nursing him. It was like a few weeks later, after the sink moment, I was nursing him in his rocker, in his room. And I looked down at his hand, and there's many symptoms signs of Down syndrome. One of them is there's a line. Like if you look at the palm of your hand, there's lines like creases in your hand. And our creases in our hands don't go across the whole length of our palm, but his does. And I look down at this crease that went across his entire palm, this sign that yes, he's different, he has a disability. And this is one of the confirming signs of it. And all of a sudden, in that moment, I felt this flood of emotion. I felt warm inside, and I felt like the Lord was speaking to me, saying, But look at what I've given you. Like this is my gift to you. And you get to unwrap him, you know, for the rest of your life. Like you get to peel back the layers and find out who he is and how he operates. And um, his life is a gift. And in all your prayers, I answered them because you asked me for a healthy child and he's healthy and I preserved his life. The statistics of Down syndrome and uh of fetus, you know, in utero, making it to birth for someone who has trisomy 21 is like 98% don't make it. They miscarry. So the fact, and I knew these statistics, you know, and so God was bringing this to mind like this is the 2% that make it. And I did answer your prayer and preserving his life, and he's my gift to you. So it kind of spoke to all the things, all the questions that I had in that moment. And that was a big turning point for me.

Seeing As Jesus Sees

Mac 37:32

Yeah, and I got to observe that turning point. I mean, uh, from perceiving Griffin as a as an unanswered prayer that reflects God's sort of negligence or lack of care. Now all of a sudden going, whoa, 98% of um infants who are conceived who have Down syndrome don't make it, and God preserved his life. Um, and and this is a sign of his love and care. That just reframes how you now look at Griffin in our daily life to go, this is an answered prayer, actually, not an unanswered one. And of course, uh for me, I I began to notice, and this is complicated because as you raise a child with disability, you're in a world with people who have very different perspectives and ways of relating to those who have disabilities. And one of the things that I really uh had fun doing was just noticing how Jesus related to those who had disabilities. I mean, uh, if you read through at one point, I just read through the gospels with the lens of disability. And I noticed that it started with Jesus' eyes. Over and over, not just with those with disabilities, but the gospel writers note how Jesus saw. Jesus saw their faith. He saw that woman weeping, he saw the crowd around him, he he he saw and and moved in. Like he over and over, they're making notations about Jesus' eyes, his perception, who he's noticing and how he's relating. And um, and I noticed that Jesus, after seeing people and and um in a way that affirmed their humanity and dignity and that they're image bearers of God, um, he often did things that were disruptive to the people around him, those who weren't able to see individuals in light of their dignity and humanity. Um there's accounts where the the disciples were trying to quiet or push aside someone um who was disabled, and Jesus would stop and attend to them and in a way turn the entire value system upside down. And so that's something I've become increasingly passionate about is learning how to see uh individuals who have disabilities um as gifts, as image bearers, treating them with dignity and respect, but also um I kind of have a prophetic edge, um you know, being a force of disruption in a culture where We still have a long way to go.

Trisha 40:02

Yeah. And we do have a long ways to go. I mean, what you one of the things I think that you've said, beginning in the in the delivery room, is that this whole experience surfaced your own mental models about what it would be like to have a child with disabilities, your own core assumptions. But Griffin's presence in the world challenges all of our mental models about that.

Mac 40:27

And it's almost like we needed to have our, like it took Griffin to heal our own sight.

Trisha 40:33

Yeah.

Mac 40:34

And, you know, of the 30 some miracles recorded in the gospels, almost one-fourth of them are um healings of sight. And what I'm suggesting is I think all of us need to have our vision corrected. We need our sight restored to be able to see the way that God sees. And I do want to orient with a lot of grace and compassion because for us it took conceiving and raising a child with a disability. And not everybody, I'm not, I definitely wouldn't be where I am now without having Griffin. So if you hear me, I'm going, hey, I I have a uh a passion for this, there's an edge to it. I can get feisty about it. And I recognize that I wouldn't be where I am without the unique opportunity to have a child with a disability.

Trisha 41:19

Yeah. I you know, I I think about, you know, the disciples who come to Jesus and say, you know, who sinned? This blind man or his parents? And um, you know, that exposes that mental model. And in that culture, that culture of maybe um ritual purity and that sort of thing, you know, that would have been so important. It seems like in our culture, what gets exposed often is our um our addiction to efficiency and to excellence. And you know, past cultures didn't even have the shot of perfectionism that we have now. And you know, that's just built into our Western, I'm gonna say US culture, even into our Christian culture, right? That God is there to make sure that I get all the good things that are coming to me. And um and not the bad, I'm putting that in quotes, the bad ones. And so I can imagine maybe one of our listeners hearing what you said about, you know, the two percent and thinking, oh, I can't wait to just go tell someone who's going through this, oh, this is the two percent, this is the gift, you know, yeah, at a time when that would be very premature, or where that would be more about, you know, if I were to say that to someone, it would be much more about my anxiety about them facing absolutely um the the the future that they're imagining or that I'm imagining for them than it is about offering anything helpful to them.

Ableism Exposed: School Stories

Mac 43:06

And so Yeah, I would I would just jump on that for a moment and say one of the things that made our acceptance or I would uh adapting to our new reality more challenging and not less was absorbing well-intentioned um people, yeah, um, using cliches and positive platitudes in a way that actually spiritually bypassed. I think you're pressing on that, Trisha, which is to say, hey, um be careful about, and this applies more broadly than just uh uh people who have maybe absorb are absorbing news of a child with a disability or whatever. I notice this in in as a pastor, anytime someone who's going through grief, we're often like Job's friends. We're anxious about what they're experiencing, and so we rush in and say things that are less than helpful and more designed to comfort us.

Josie 43:59

Yeah, almost like you have to have an explanation to relieve your own anxiety. And so you're offering the explanation to that person while bypassing just sitting and being present to them and listening to how they're feeling and how they're doing.

Trisha 44:13

And trusting that the spirit will have the moment with them that the spirit had with you, Josie. And with me at different times in different ways. Yeah. Um, I know that you've named some of those things that happen um that get in the way of us really being helpful and actually become unhelpful. I want you to tell us um what some of those things are so that we can um, you know, grapple with that ourselves. And then I'm gonna push back just a little bit. How's it been? Okay.

Mac 44:52

Let me um I'll name some pitfalls I've noticed. And this, I want to be careful. Um, this is our story. So I can only see things from where I sit in light of our experience with Griffin. There are lots of disabilities, there's lots of different experiences and stories, so I want to acknowledge that. But as we've raised Griffin for the last 10 years and watched how people interact with him and some of the challenges he's experienced and we've experienced as his parents, I have noticed a handful of pitfalls that I would encourage people to avoid. Okay. And the first one I think most of most of our listeners would agree with, but I don't know if they would see how it how it still plays out, and that is prejudice. So we we do live in a culture where inclusion, thank goodness, is is sort of a you know, a common cultural value now. And that's wonderful. Just 50 to 60 years ago, most individuals with Down syndrome or other disabilities were simply institutionalized.

Josie 45:51

Yeah.

Mac 45:52

And so there's been a lot of progress that we're deeply grateful and thankful for in creating environments that prioritize inclusion. However, um, I think sometimes people think because they have the value, it's not happening anymore. Like prejudice isn't a thing anymore. We've sort of arrived. And um, and in fact, we've we we still encounter instances like that with a fair degree of frequency.

Josie 46:19

Yeah. So Griffin is going to middle school this coming year. Um, and part of middle school is that you get to choose what music you're going to do. And he has been in music therapy since he was three. So, really, for a long time, I've been like, yes, percussion is his thing. He loves the drums and he's been playing the drums uh with his music therapist faithfully every single week for years and years. So when it came for the tryouts for band, I kind of got ahead of it. I called the school, I made sure, like, yes, we can accommodate you, we can try out for band. And when I got there, there was a music teacher that wasn't from the specific school. She was part of the district, but not part of the specific school that Griffin will be attending. And I think she got a little bit caught off guard as far as she wasn't prepared for when Griffin came into the room. So the way it was was that you waited in line uh until your time, and then the band teacher takes you and maybe one other student and works with you to see how you are adapting to percussion. So she'll go through some rhythms and some songs and see if you can rat-a-tat-tat along with her. And when she was finishing up, Griffin and I were sitting there and he has a lot of sensory issues. So he's spinning beads while he's waiting and he's listening to Spotify on my phone and looking at pictures and stimming out as he does. And she looked over and I said, Yes, this is Griffin. He's going to be in fifth grade next year. And with all the other students, she took them over and worked with them. With Griffin, she sat and talked to me. And when we were done talking, um, she was ready to move on to the next students. And so I kind of stopped her and I said, Well, I think he would like to try, you know, the instrument. And so I I initiated it. I took him over to the drum and he doesn't take well to new situations. And so immediately he was whining and kind of done. He says, All done, all done, and uh sitting on the floor. And for maybe 10 seconds, she attempted to kind of try to, and after she realized that it wasn't going to work, um, in her weak attempt, she bypassed him and moved on to other students. And so in that moment, I kind of made the quick decision, you know, I'm gonna let him have an opportunity here. Like he doesn't, he's not gonna get into the drums and understand what this is about unless I'm here for, you know, a portion of time so that he can actually adapt to this new environment. And he ended up having a fantastic time. And she was across the room with other students. We were making a total ruckus. And he ended up having an absolute blast. But I walked out of that in tears because I felt like she did not take the time and attention it required to really give him a shot. And she just moved on to kids who were able to perform in the way that she wanted them to.

Mac 49:30

Yeah, and this is where the justice lens comes in when I wasn't at the appointment, um, but I heard about it. And um, and so we quickly organized a meeting with higher-ups to say, hey, this is this is what we just experienced, here's what that is, and um, and here's what we want for our son. And um, we're grateful they responded. Does make sense?

Beyond Inclusion To Belonging

Trisha 49:52

And so I'm thinking about in the places where we are leading, where we are, you know, helping to shape systems, that reminder, whatever it ends up looking like, that reminder that um how did you say it, to put a person's humanity, their personhood before the disability, as we're as we're taking in all the whole variety of information about a person.

Mac 50:20

Yes.

Trisha 50:20

To remember that that comes first.

Mac 50:23

That's right.

Trisha 50:24

Yeah.

Mac 50:24

Now the offside of this, so if one pitfall is sort of prejudice, the flip side or on the other uh end of the spectrum, I would say, would be almost like a disability blindness. So there's some people who say that I've noticed and we've had experiences where it's like they know, oh, prejudice is wrong. But it's almost like let's get to this place where we we we we don't even see, for instance, the disability itself. We only see that they're created in God's image and their humanity and dignity. So we've had instances where we're standing there, you know, um, with other kids who are in Griffin's class, and the parents will say, you know, when I when I see Griffin, I don't see him different than anyone else, you know? I see him just like any other kid. And at first you're just kind of like, you kind of cock your head and you're like, You what you what? Like, well, clearly he's different. Like, you know, um, this is just it's kind of comical, but then you realize, oh, there's there's actually more to it that like that there's there's a harm and hurt that does. Um, because if you're not able to see the Griffin's disability, you're also not able to be present to the unique challenges and hardships he experiences day to day. And and uh maybe the challenges and difficulties we experience um as his parents or as a family. In other words, if you're not able to see his disability, then you're you're sort of ignoring reality, right?

Trisha 51:52

Yeah, and you can't really see him as the unique individual that he is.

Mac 51:57

That's right. That's that's right. And so part of my conviction and what I if if people are willing to learn alongside us, I say, look, to truly see Griffin, you need to see his humanity and dignity and to learn how to honor that. Um, but you also need to learn to see his disability and how that shows up and some of the challenges that come with it.

unknown 52:19

Yeah.

Trisha 52:20

Because I'm guessing if I don't see his disability, and then I'm interacting with him in whatever setting, and his disability just becomes very glaringly obvious, I'm I I think I would run away. I I wouldn't be able to stay engaged. Yep. Because I wouldn't be able to hold on to that idea that, well, I don't see this.

unknown 52:42

Yeah.

Mac 52:42

Yeah. And another example where this was hurtful and harmful again was just recently we have a lot of IEP meetings because Griffin is jumping from elementary school to middle school. And in the first round of IEP meetings, um, there we walk Griffin to school. He's close to our elementary school, but the middle school is not close. And there's a there's a bus that's available for individuals with disabilities to prioritize their safety, and because they can't walk to the bus stop. And so our uh hope and expectation was that that would be extended to him. And for whatever reason, it it was not written into the IEP. So we had to have a second set of uh IEP meetings just addressing the bus. And the head learning strategist came. And again, I'm gonna summarize because I wasn't at this one, Josie was. Um, but as it was recounted to me, this woman was very much wanting to try to see if we could just put Griffin on the normal bus. And in addition to Down syndrome, we're fairly confident that Griffin has autism. So he has a lot of sensory issues. He gets overwhelmed, especially when there's chaos around him or uh unpredictable noises and things of that sort. And we're just kind of going, no, like no, like that's not safe for him. He could show up at school and be completely dysregulated just because of the bus ride. This isn't a good idea. And she went on a long rant about how this is her vision. If kids take the special bus, everybody's gonna see that they're special. And if every kid could just ride the normal bus, then um then everybody would be normal and see them normally. And and that's an example where I was like, nope, see, you're you're you're you're actually compromising his safety. We're not prioritizing what's best for Griffin, that he needs a a certain ride to school. And I don't want everybody to see him normal because he's uh quote unquote normal, um that's doing bad work. So your vision is rooted in a disability blindness that's harmful.

Trisha 54:44

Because we're not saying that everyone is the same. No, we're saying that everyone is valuable, yes, yes, and that's not the those are different things. But I can say that I believe that Griffin is valuable, but still not really want to do life with him. Yes, you know, not want him, not want to have a full engagement with him. Yeah, yes.

Leaders’ Fears, Limits, And Next Steps

Mac 55:12

And that's the third pitfall I would name. Wisconsin is amazing with all of its programs to support, and it's one of the best in the country.

Josie 55:20

Yeah.

Mac 55:20

And there's also some like nonprofits in our community that exist to support individuals with disabilities that are doing incredible work. So, in no way am I wanting to like slight those organizations and the opportunities they're providing for people to serve a community that's often overlooked. Having acknowledged all of that, however, um I've I've noticed that there is a way of being involved in serving uh through programs to support the community of those who are disabled that's very much on my own terms. I can I can like sort of like swoop in and give of my time and energy and oh, I even feel good about it. You know what I mean? I get some warm fuzzies about it. Um, but it's in a very confined and controlled space, and then I can leave and go out and live my life.

Josie 56:10

Yeah.

Mac 56:10

People will serve in programs and ways that make them feel good. Um, but but they're not necessarily like creating space in their life to befriend individuals with disabilities, which is much more inconvenient.

Josie 56:23

Yes.

Mac 56:24

The way I'd get at that is there's a lot of people who would help Griffin for a moment, but Griffin has very few friends.

Josie 56:30

Yeah.

Mac 56:32

And when we go back to Jesus, I don't think he just had a momentary like a moment where he served someone with a disability to make a difference. He actually uh invited that and challenged the community around him to see this individual differently such that they're now included in that they're part of the community.

Trisha 56:50

Yes. Just a vision for Gliffin, not just being in not just being um included in general, but belonging. Yeah. Um what what do you see about that? What do you hope for?

Josie 57:08

Yeah, I think it's hard because there's some level of reciprocity that has to happen in a relationship for it to for it to be a true friendship. And and that's part of the one of the barriers is that Griffin often doesn't operate on anyone's terms but his own. Like he kind of forces you to meet him where he's at, and he's incapable of meeting other people where he's at. So there is there are barriers to this. But I think one of the biggest things that Mac named is that most people want to meet him on their own terms. They want a set of time or a chunk of time they're willing to give this, but not that. And if you really want to enter into a relationship with him, you kind of have to take the good and the bad and the ugly. You kind of have to go beyond maybe your comfort zone of what you're willing to do.

Mac 58:04

Yeah, I think the shift is from pity to presence.

Josie 58:07

Yeah.

Mac 58:08

Um, I think we actually need to move beyond inclusion to a place of belonging. We have to shift from seeing these people as people to be served, as as friends to embrace. And not just that, but they're a vital part of the body of Christ who have gifts to offer and contribute and are part of our interdependence as a community to fill out what God is doing among us. Just as every other person has received the power of the spirit, individuals with disabilities have the power of the spirit are activated to make a difference. And I guess what I'm trying to name is inclusion often doesn't create that interdependent interdependence, even though it may not be uh 50-50 in terms of reciprocity. There can be a sense of mutuality and relationship, even though the table may always be bent a little, tilted a little bit to go, I I you need assistance, right?

Josie 59:04

Yeah. And I think perhaps one of the biggest pictures that Mac and I have gotten of this, like the person that comes to mind that who's gotten closest to it is one of Griffin's aides at school. Her name is Mrs. Allen. And she is a wonderful human. And the way that she interacts with him is with lots of dignity. And she will get on his level and she will, you know, kind of wait for him to speak first. And she is very gracious to him and always is so grateful for how much he teaches her. She's constantly telling me, like, I learned so much from Griffin. I'm so grateful he's such a gift. And the way that she just exudes love in that way and compassion is something that is very rare, rare for me to see. And so some people do get it right. And it really is a gift to us as parents because you kind of have that moment where you're like, oh, like this person. Really sees Griffin the way I see him or the way Jesus sees him, like for the gift that he is. And he may not meet them where they want him to meet him, but he does have a lot to offer. And it's in the way of love and millions of kisses, and you know, um, singing songs and saying rhymes. I mean, it's it's in his own way, but he has a lot to give that if you stop for a minute and get on his level and see him for who he is, that you you get a lot in return.

Disability Theology And Mental Models

Trisha 1:00:33

Oh okay. I told you that I was gonna push back because I can hear some of our listeners who are listening to this not as parents, but as leaders. I can I'm and I'm gonna say I can hear them because I've heard this in my own head, okay? I can hear them saying yes, and I am already so tired, and it is already so hard to keep people coming to our church with even the least kind of distraction. And the people that are coming to church are consumers and they're not looking for this. And I can imagine people saying, I want to do what you're saying, but I know I've gotten it wrong because I've done some of the things that you've called out, and so now I just want to go crawl in a hole and not do this anymore. I can imagine, I I have heard um leaders say, I have this family, they have a child or children with disabilities, and none of the small groups want them. And I don't know what to do about that. Or um, I want to take this on, and I have no idea how to go about that in a way that doesn't just completely burn me out. And maybe kind of um when they see the family coming, think what you thought at the very beginning is this really a gift? Is this a gift to our congregation? Or is this just going to be a challenge? And those are all really hard questions, and they're questions that I know people are grappling with. I hope they're still listening and would be willing to have a really challenging conversation about that. So let me just jump in and ask you so, what about what's in the listening of some of the people who are tracking, but also thinking, yeah, but yeah.

Mac 1:02:44

Well, I think I said be kind to yourself. I remember saying something along those lines. And and part of what I would want to start with saying is that God already knows everything you have on your plate. He sees your exhaustion, he knows your fatigue, he knows the responsibilities you're juggling. And so maybe the starting point is just to ask God, what are you wanting me to do? Maybe, you know what I mean? Maybe maybe it's not uh add one more thing to your plate, but it's asking God to organize your plate, which feels different to me. But let's assume that you wanted to engage. What would that even look like? How could you go one step further? One of the first things I would say is you need to continue engage the mental model work around this conversation. Um, there is a whole field of study known as disability theology that is very much challenging the existing and predominant mental models around disability. And um and it's kind of your responsibility to engage that. You know, just as um there's literature around what women might experience in the workplace or uh black people in the United States, it's our responsibility to educate ourselves on those dynamics so that we can show up differently. And there's a lot of really cutting-edge uh material that is that is being written and produced from those who are disabled or studying this in a in a very focused way. And the way I would get at it is, you know, when I was in seminary, I had to take numerous theology courses, and I still have textbooks where like maybe a chapter heading would be uh a feminist theology, uh liberation theology, uh Asian theology. And many people have pointed out, hey, why is there that disclaimer in front of their theology, but we just call basically Western white male theology Christian theology?

Trisha 1:04:36

Now, why is no, we'll save that for another.

Mac 1:04:40

But the but the point is, I think a lot of people have done a great job addressing that conversation to say, hey, everybody's writing from a social location um and and through and and and are processing theology through a particular lens. And that's a both a that can be an advantage and a disadvantage. Um and so for example, Esau McCulley's book, uh Reading While Black, I think he does a great job saying, hey, I'm a black man and that shapes the way I see things. And I want to be careful about imposing that onto the biblical text in a way that would distort it. But I want to argue that that also gives me a lens to be able to see things that maybe other people aren't able to see.

Trisha 1:05:20

And I know when I read that asking me as a white person to recognize that I also come to the text with a particular lens.

Mac 1:05:28

Yes.

Trisha 1:05:29

Um, not just it's not just that Esau Makali comes to the text with a particular lens.

Mac 1:05:35

All of us do. All of us do. And yes, the more we're aware of what those lenses are, it can help us, it can prevent us from imposing things onto the biblical text that aren't there. But it also um maybe helps people see things that are there that those who don't have that unique experience aren't able to see. So, as I read, for instance, again, I'm using Isamakulay as just one example, he was able to show me things that I would miss as a middle-aged white man. Okay. What I'm trying to name is that there's a whole bunch of people who are writing from the hermeneutical perspective of disability. If we put on uh the glasses of disability and then begin to read the Bible, read scripture, what is it that we might begin to see that we would otherwise miss? And just like everybody, all of us, we want to be careful about imposing things on the text that aren't there. These authors, I think, are doing a great job sort of exposing things that are there that we would otherwise miss.

Trisha 1:06:39

So, what's something that we would otherwise miss about disability, for example?

Mac 1:06:44

Yeah, I think um Some of the voices around disability theology are naming that there's this common perspective that disability is the result of brokenness and sin in the world, and the ultimate end result is healing, meaning who sinned this man or his parents.

Trisha 1:07:03

Correct.

Mac 1:07:04

Yes, that would be an example of giving insight into that text, right? And so many of these authors are arguing or advocating that disability is an identity marker that doesn't need to be fixed or changed. So it's not a problem to be fixed. Um, it's actually sort of a vital and God, God-honoring part of diversity that belongs in the church. So maybe, maybe um it's not about becoming independent, but rather disability gives us insight into God's ideal, which is interdependence. And when we emphasize that just disability is a result of sin brokenness or something that needs to be healed, then that shapes the way we engage people who are disabled, namely, you're a prayer request that I need to fix.

Trisha 1:07:52

Yeah, yeah, you're a problem I need to solve. Exactly.

Mac 1:07:55

Yes. All of these authors would say that in the new heavens and the new earth, all of us will be made whole and restored. Okay, so they're not disagreeing that there's some wholeness waiting for someone who has a disability on this side of heaven. But there is a question about what does that wholeness look like? And so positively, it's really pushing back against uh, I think, um, poor ways of engaging that are rooted in pity, maybe some tokenism around preding disability as evidence of inclusion, um, confronting how ableism shapes our church life. They're doing a lot of great work, and yet there's also some really sensitive questions that need to be asked.

Trisha 1:08:45

And if people could come to that, not with do I agree or disagree with this theologically, but more with the idea of what is this angle on this help me to see about myself, my mental models about disability, my mental models about what church should be, um, and so forth. Um, that could be a really breakthrough kind of conversation, it seems to me.

Mac 1:09:14

Yes. Yes, and some of that work can be done on your own. You can, if if you're from a if you have a theological background or are interested and enjoy reading, you can do some of this reading on your own. And if there's someone in your commute community that enjoys dialoguing about this, that can add to your mental model work.

Asset-Based Ministry And Calling

Josie 1:09:34

I would also add to that, it really helps to know someone, have a relationship with someone who has a disability while you are sorting this out because it brings a different aspect of humanity and dignity and individuality to the conversation that you wouldn't otherwise have as well.

Trisha 1:09:56

And that goes to what y'all said last time about um we're so glad that we've moved toward inclusion, but we don't want to stop at inclusion, not that we're even there yet, but we don't even want to stop there. We're what we want is belonging.

unknown 1:10:11

Yeah.

Trisha 1:10:11

And until we have those kinds of relationships, y'all were saying, Yeah, and I agree, we we're not at belonging, we're still at the place that y'all were describing in terms of um this is a problem to be solved or a brokenness to be fixed. Yes.

Mac 1:10:32

So just like any live conversation, I would just maybe forewarn you, there's a lot of divert, there's diversity of opinion. So it's not monotone, not everybody's saying the same thing. Um, I don't agree with everything that's happening in this conversation. I just listened to a podcast last week where uh this is literally the guy's doctoral dissertation, so he knows way more than I do. But he argues that Paul's circumcision was perceived as a disability within the Roman world, that Paul probably the thorn in his flesh was some sort of speech impediment, and that he may have suffered from dwarfism or been because of the basket story. And I just remember thinking, huh? Yeah, I would never have thought those things if I wasn't going back to your curiosity thing, Trisha. I would have never thought those things until someone raised those questions.

Trisha 1:11:21

Uh-huh.

Mac 1:11:22

And they're worth exploring, they're worth considering.

Trisha 1:11:25

Not again, not in an agree-disagree way. Correct. This is true or not true, but just what if?

Mac 1:11:32

What is this open up?

Trisha 1:11:34

Yeah, what if the thorn in Poss flesh was related to some kind of disability? What would that mean?

unknown 1:11:40

Right.

Trisha 1:11:42

So so I still want to go back to our hypothetical listener who is saying, yep, I agree. I think that this is probably, you know, that however however it works out in terms of the details, God's plan is for the church to represent everyone, for all of us to be able to participate, to belong. And I'm just tired.

Mac 1:12:10

I'm overwhelmed.

Trisha 1:12:11

I'm overwhelmed. And I and I am afraid that if I lean into this, people will leave.

unknown 1:12:21

Yeah.

Josie 1:12:21

Take a deep breath. Right. I think I think that's a very common feeling, you know, to just be overwhelmed. And there's so many opportunities, even within a church community, that you can be involved with. And you certainly can't be involved in all of them. And so I do think a large part of it comes down to your calling, you know, kind of what Mac had mentioned before, where is assuming that God is at work, that Jesus is ahead of us and working in every person's life. We can assume that God is working in the area of disability within a community. And who would God raise up in your church or in your circle of people? Not everybody is equipped or passionate about working with people with disabilities. Now, everyone should have some baseline knowledge and um ability to interact, but not everyone is being called to head up this area of ministry or be passionate about it. And I think that that is a key factor in this conversation.

Practical Vision: Guiding Attention

Mac 1:13:35

I would add to that by saying I'm right there with you. And let me explain what I mean. Um, we had someone come and lead our staff this past Monday on a comp in a conversation around disability. Um this is a woman who led a disability ministry for over 15 years. And uh recently attended a church conference on disability in the church. And so she was just bringing a lot of helpful information. But at one point, we started talking about other churches in the area that seemed to be champion embodying um this really well. And one of the things I noticed in each one of the stories was that the person who embodied, who championed this throughout the church was usually a parent of someone who had a disability. And Josie and I, in fact, know an incredible couple who we we knew at Bethel in our undergraduate program, who ended up having a son with a disability, and they're now leading a nationwide ministry. I mean, it went bonkers. She's been on um the Kelly Clarkson show, and like, but at no point did Josie and I ever feel like, hey, this is going to become our mission in life to start some ministry around disability. And I named that to our staff on Monday. I said, I this is overwhelming to me. We're trying to survive some unique challenges that we're experiencing with Griffin in this particular season, like we're in survival mode. I'm not the person who can like take the baton and lead the charge in this area. But nor am I supposed to. And that's kind of where we have to get to our philosophy of ministry and some of the mental models we bring to church leadership. There's a strong inertia for if this matters, then the leader needs the leader, or more broadly, the staff needs to be taking, taking the reins. And I want to flip that upside down a little bit and ask the question not only is what is God doing already in your community, but what who in your community already has more expertise than you do in this area? And I have a son with a disability, but there are at least five people I can name that actually are way more knowledgeable than I am when it comes to disability in our community that would do a much better job um spearheading this and leading us into something that looks like God's kingdom.

Trisha 1:16:07

And I would add, um, you know, not only who knows more, but in every congregation we've been in, often these are just these are people who just have a deep well of caring who might not be the ones that are signing up for everything else. Yeah. You know, that has been true in our congregations. The people who just noticed, wait, we want this to be a place where anyone can flourish.

unknown 1:16:36

Yeah.

Trisha 1:16:36

And, you know, they take that on in a way. And and maybe they're not the experts, maybe someone else has to kind of come in and help structure things like that. But they're the ones who I don't know, in some ways, they're the ones that aren't moving 90 miles an hour, you know, like I am, like many of the pastors. But they're often, at least in the congregations that we've served, been some of the ones who um just have a little more, I don't know, um a little more willingness to just walk with people. Yeah.

Mac 1:17:14

Yeah.

Trisha 1:17:14

Without having to start programs.

Mac 1:17:17

That's right.

Trisha 1:17:18

And then the program comes out with that. Um yeah.

Mac 1:17:21

That's right. Yeah. I would, I would, I would actually um encourage you not to go out and try to start some sort of a program. Yeah. Because it will be probably half-baked and really difficult to sustain. But what I am advocating, and this is some technical language, is to take an asset-based community development framework. And so take missions, for example. Oftentimes we go on short-term mission trips and we try to kind of come in with sort of a messiah complex and bring our own resources to the area to provide relief or development or whatever it is. The best thinkers are going, well, what if we assumed all the resources we need are actually in that community? And our job is to help bring those to the surface and equip them to coordinate and activate on those. So, what I'm suggesting is rather than you assuming, hey, I need to figure this out and then present it, what if you assumed that the diversity God wants in your church community pertaining to disability is already present in your community?

Trisha 1:18:21

Yeah.

Mac 1:18:22

And you want to foster an environment where that can begin to surface and grow and take shape.

Trisha 1:18:28

Yeah. We've so I don't want to tell other people's stories here, but we've served three congregations, and in each of those congregations, what you're describing has been exactly what has happened.

Mac 1:18:39

Yep.

Trisha 1:18:40

Um in some really lovely ways.

Mac 1:18:42

I love that. I love that. This affects more people than we realize. So I know we've been talking about Down syndrome a lot because that's part of our story. Um, but statistics suggest when you look at all the adults, children, there's invisible disabilities, um, ones we don't even see. There's physical disabilities, cognitive, mental health. Um, about 17 to 20 percent of the American population um has some sort of a disability when you consider all the different types and varieties, which means about one in five. I mean, it's already present in your church, is what I'm trying to say.

Trisha 1:19:22

Absolutely. And I don't know if that statistics takes this into account, but I know that in our congregations, often that goes along with aging as well.

unknown 1:19:35

Yes.

Trisha 1:19:36

You know, people start moving slower, they can't climb the stairs that they could. They're having a cane or a walker and and so on. And I wonder if they even get counted in the conversation about how to make our congregations a place where everyone can flourish.

What Griffin Needs From Us

Mac 1:19:57

That's right. Um, able, able. Bodiedness exists along a continuum or spectrum. And I know there's even people in our church as they've aged and are no longer able to make it to our weekend service, they feel useless in our community.

Josie 1:20:12

Yeah.

Mac 1:20:13

Um, so what does it look like to acknowledge that, hey, um, it's not just able-bodied people that are valued here, but that everybody has a contribution to make. And what does it look like to engage those folks rather than go, hey, since you can't make it here, you no longer are part of our church?

Trisha 1:20:28

Yeah, which we would never say out loud, but we just kind of forget that they're there.

Mac 1:20:34

Yes.

Trisha 1:20:35

Yeah.

Mac 1:20:36

That's right. That's right. I think prayer is another piece again. Um, I want to suggest that God is on your on your team here and is working when you can't and don't feel like you have the resources. I remember years ago doing a ton of reading on systemic racism and how that shows up and going, yeah, but I live in a predominantly white, affluent community. And one of the things that happened, and the leader's journey has been part of the answer to this prayer, was God, just color my life. Bring people of color into my life. I want a more diverse group of friends. And um, and I've noticed God answering that prayer over uh um three or four years. I now it's way more diverse than it used to be. And so if God's kingdom is um values diversity and interdependence, I believe that when we when we ask God to help us move in that direction, that God that God answers and um and can work even when you don't have the energy to do so.

Trisha 1:21:38

Yeah. Okay, yeah. Josie, anything that you want to add?

Josie 1:21:43

Yeah, I was just thinking about that. And I think when you are just humming along life, and I kind of think back to when before Griffin, you know, life before Griffin, it was oftentimes that I didn't even see the disability around me. Like I didn't have eyes to see it. I wasn't paying attention to it, I wasn't um going about my life in a way that would foster interaction with individuals with disabilities. And I think that if God puts that on your heart as a desire or something you want to lean into and grow in, uh, He's gonna give you a different set of lenses to be able to see. Because as Mac is saying, it is all around us, you know, from the entire spectrum of children through adults, uh, at the grocery store at church, wherever you go, like you will, if you have eyes open, you will encounter people um with differing abilities. And so I just I kind of want to reiterate that and um and give like a little bit of vision for man, you have you have a whole world out there that God has in front of you. And if you only have eyes to see, you can join him in the work that he's doing in this particular community.

Trisha 1:23:00

Often, though, as leaders, we have an idea of what kinds of people we want to our communities to be made up of. And I don't care what the category is, God tends to pry our hands off of those. Yeah.

Mac 1:23:17

Um and that's that's maybe some pushback. You know, Trisha, I'm not afraid to push back a little bit. Um, I fully want to acknowledge that many leaders and myself included often feel like I can't add one more thing. I don't have space for it. And I kind of want to go, but is that really the case? Because we live in a world that's focused on upward mobility. How much time do you spend, for instance, engaging in work or effort to climb the ladder or to you know put yourself on social media to boost your you know what I mean? And I think of maybe one of the most inspiring people for me in this area is Henry Nowen, who left a prestigious academic career at Ivy League schools, abandoned it all, um, not to sacrifice his voice, but to move into a community with those who have disabilities. And very much it wasn't a pity move, it was a belonging move. There was a sense of reciprocity and mutuality that comes through in his writing. Yeah, and that was a life of downward mobility. And that is required. The way of Jesus is the way of downward mobility, and it does require us to reshape our priorities.

Trisha 1:24:29

Yeah.

Mac 1:24:30

You know what I mean?

Trisha 1:24:32

Absolutely.

Mac 1:24:33

So I hope that's not like maybe too much of a pushback, but sometimes we may not feel like we have space for something because our priorities aren't where they they need to be or could be.

Closing, Next Guest, And Outro

Trisha 1:24:44

And I know that you're saying that. Um, you know, it if you're just listening, you can go look on the YouTube video of this conversation and see that Mac is saying that with a very compassionate face. That you're both pushing back. That that you are pushing back, you're you're challenging, but that you're doing that in a safe and compassionate way. And I think I think too, um I want to go back to what y'all said earlier about what the role of the leader is. But the role of the leader in this case for for both of you, you're talking about noticing, you're talking about creating openness. And the role of the leader may be to do that, not so much to okay, now we've got to start some kind of program, sure, but to just guide a community in noticing and guide a community in being curious and just um you know, taking that initial um uh anxiety that we all have when we're thrown into a situation where we don't have it, and then helping us get past that um long enough to wonder okay, what might God be doing here? And how do we stay open to that?

Mac 1:26:05

Give one example to cast vision for that because our community is very much growing. We're not we don't have it, we don't have this solved or figured out. We have room to grow as well. We have a group um of people who have praetor Willie who come to our church, which is a kind of disability. There's probably about five to six of them that come periodically and they stand in the front row and they worship passionately. Okay. Um, we also in each one of our weekend services just have a the introverts hate this, but we create some time for community. Find someone nearby, maybe you don't know, and just spend a few minutes hanging out. We give them a fun question or whatever. I've noticed that on the weekends I'm preaching or hosting our service, nobody interacts with the individuals who have Praetor Willie. So this is an example. Very in the very near future, I plan to name that for our community when our friends aren't present.

Trisha 1:27:07

Yeah.

Mac 1:27:07

I'm noticing something. And I want to make sure that in future weeks they're never standing alone. And I know our community doesn't mean to do that, they just don't see it. And the moment I say, Do you notice that? they're never gonna stand alone again. They just need some help. Yeah, you know what I mean?

Trisha 1:27:27

Which we have talked on several occasions about that the work of the leader is guiding the attention of the group.

Mac 1:27:35

That's right.

Trisha 1:27:36

That's what we're talking about.

Josie 1:27:38

Yes. Yeah, yeah. And in addition to that, uh, we kind of have this idea that we need to add something to our plate. Like you were saying, I'm so overwhelmed. I can't add another ministry, I can't add another initiative. But I think it's not so much adding as it is just becoming more intentional. And in that way, this isn't requiring more time. Like with Max's example, we all already have community time at our church every week. You'll be doing it either way. But if you have eyes to see this group of people that aren't being engaged, then you be can can become more intentional with the time that you already have.

Trisha 1:28:18

Oh, that's perfect. I love that. Yes, because if we're already in community, that's absolutely true.

Josie 1:28:25

That's right.

Trisha 1:28:26

Um okay, I'm gonna put you on the spot just a minute before we wind this up. So um for you and your lives, this is now after Griffin. And so many people will interact with Griffin in his life. What is just one thing that you wish that people um in any kind of community, maybe not just at church, um, would just be able to remember or track with as they are interacting with Griffin.

Mac 1:29:01

I know my answer. Um, my answer would be don't give up.

Josie 1:29:06

Okay.

Mac 1:29:07

And the reason why is because Griffin has Down syndrome. He's also autistic. And when he um isn't interested in interacting, he won't interact with you. He'll say bye and he'll walk away. And I've watched repeatedly, both in my own family, but also in our church community, and people have had they'll try to interact with Griffin, and if he doesn't respond right away in the way that they might assume or expect him to, they give up.

Trisha 1:29:35

Ah, okay.

Mac 1:29:36

And Griffin rewards those who persist.

Trisha 1:29:39

Okay.

Mac 1:29:40

You get what I'm saying? Like you have to get inside his world through repetition till he feels connected to you. Um and so, and I think that that maybe translates into other scenarios too, that those who are disabled may not interact the way you would expect them to or want them to. And you might have to linger, slow down and linger a little longer in order to reach a place of friendship and mutuality.

Josie 1:30:03

Thanks. Yeah. Mine kind of mine kind of dovetails right off of Max. What I was thinking about was connection. It's very few people that will actually take the time and the patience that it requires to connect with Griffin. And it's what I desire for him for his entire life. You know, when you sit at IEP meetings and you're talking about his goals, they're like, what do you have? Like, what kind of goals do you have for Griffin's life? And above anything else, aside from him loving Jesus, I want him to be connected to people. And I want him to have some form of intimacy with other humans. And a lot of times he just it he's in a different environment and it's just not the time or place. But if you do take the time and have patience and find like creative ways to connect with him, that's when you see him for who he really is. And I think see him for for who God knows that he is. And above all, I just want him to reach his full potential, as we all do. And it's gonna look different than it would, yeah, for a typical individual. But um, yeah, I just want people to see him connect with him.

Trisha 1:31:14

Uh I think we're gonna leave it there. This is a conversation that as we were preparing for it, in some ways, I realized um, oh, I I do have the stories and the experiences, you know. Um and on the other hand, I realized I really have a lot more to learn. Um, a lot more. And so um I'm really grateful for y'all um having this conversation with us. Um I I think that there is a readiness um for this. And so maybe in the near future we'll convene a Zoom dialogue around this. That'd be great. Listeners need to uh go sign up for our newsletter on the website so that when we decide to do that and we really can have a conversation where everybody can um take part, you'll know where and when that is. But um until then, let me just say thank you to our listeners for being with us today. Um, you can reach out all the normal ways, the leadersjourney.us, all the socials. Um, for now, let me just say um we're jazzed about the idea that God wants everyone to flourish and that that's part of our design, which is something we talk about a lot. So, anyway, thank y'all for listening. Y'all take care.

Mac 1:32:40

Thank you for joining us today. We hope you enjoyed today's episode and you will enjoy this entire series. Next time we're going to have a guest join us, Emily Enixton will be here with us. She's an awesome, awesome human being. Um, she's part of our church community, runs a local organization for people with disabilities called Zacharias Acres. And she's a lot to contribute to this conversation. So stay tuned in and we'll see you next time.

Josiah 1:33:05

Practice is recorded and produced at Crosspoint Community Church. You can find out more about the show and our church at crosspoint WI.com. If you have any questions, comments, or have any suggestions for future topics, feel free to send us an email. Also, if you enjoy the show, consider leaving a review. And if you haven't already, be sure to subscribe wherever you get your podcast.