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Amy Julia (00:06)
I’m Amy Julia Becker and this is Take the Next Step, a podcast for families experiencing disability. We’ve teamed up with our friends at Hope Heals to bring you weekly conversations with fellow parents, therapists, disability advocates, and others about practical ways to cultivate a thriving future for your whole family. Here at Take the Next Step, we see your family as a gift to our society and to your local community. Your family matters, your child matters,
We need you among us. Today’s episode gives a real life picture of the goodness that can come to a whole community when parents and kids affected by disability participate widely in community life. I’m talking with Kevin Chandler, founder of the nonprofit organization, We Carry Kevin, and co-author of The Hospitality of Need. We talk about the idea of peer-to-peer caregiving, about ways that every family can invite others into relationships of care.
And we get to hear a little bit of Kevin’s own story as a man with spinal muscular atrophy, his own story of neediness and mutual care. I’m so excited to share this conversation with you today. One thing I wanted to let you know in relation to this conversation, I have a free gift for you. It’s a worksheet to help you begin your own process of connecting to community. This one page guide helps families experiencing disability map out the connections that matter most.
You’ll get some simple prompts to help you identify the peers, mentors, experts, supports, both within the disability community and in your wider circles. Those supports that will create strength, encouragement, and belonging for your family. You can find that link in the show notes. One final word before I get to this great interview with Kevin, I wanna let you know we are collecting questions now for an upcoming question and response episode. So go to the show notes, click the link, record your question,
and we are really excited to respond to as many as we can. And now for my conversation with Kevin Chandler.
Kevin Chandler, thank you so much for joining me here at Take the Next Step.
Kevan (02:20)
Yeah, thanks for having me.
Amy Julia (02:22)
Well, I’m delighted to have you on this podcast because you are the author of a recent book co-written with Tommy Shelton called The Hospitality of Need, which even in its title might be something that causes people to wonder what it is exactly that you’re talking about. So we’re going to talk about that today. But I thought maybe you could start with giving your listeners a sense of yourself.
⁓ You are someone who describes yourself as needy in fact, that’s somewhat central to this whole book Can you talk about what it means for you to be needy and what that neediness has taught you?
Kevan (02:54)
Sure. Yeah, so I’m 39 years old and ⁓ I’m married. My wife, Katie, and I are married for five years and we live in Indiana. And I have a disease called spinal muscular atrophy, which ⁓ means that I’m fully dependent on a power wheelchair. ⁓ And even with that, I’m
⁓ fully dependent on other people to make my everyday life happen. We just had a friend of ours come over this morning and get me up and showered and ready for the day. And we have different guys that come in and out of our house a lot and help out with things. And ⁓ Kavi does a lot as well with, ⁓ you know, we cook together and she helps me eat and helps me with the restroom.
⁓ she knows the driving and everything. And so, ⁓ really I, I don’t think I go more than, right. I just can’t get through a day without other people being involved. ⁓ which, you know, the, the world would look on and I’m, tempted to look on and say, wow, that’s, that’s a lot. That’s not really a full life or a, a full like great quality of life. But,
I experienced firsthand and I believe fully that it actually has led to a fuller life and a more, ⁓ not to be cliched, but a wonderful life. Because of my needs, these relationships have gone deeper. They’ve taken deeper roots ⁓ that I just am so thankful for.
Amy Julia (04:52)
Well, and again, what shows up in the book is that, as you just said, this is it’s a relational experience. Your your needs are relational. And even the way you described your own day to day life, which has perhaps magnified an understanding of need, is also not completely dissimilar to my life as a woman who walks around the house and can’t reach the top shelf. And I know that’s a.
Small example, I can get a stool, but I do, I ask other people in my household to help me daily with various things, whether that’s because I don’t want to do something or I’m physically unable to do something. And sometimes we don’t like to think of ourselves as needy, but the way you’re talking about need allows us to reimagine it a bit as a way in which we can actually call upon each other and interact with each other.
as humans, right? And I just love that idea of ⁓ kind of a network of care that is both attending to your needs, but that’s not all that’s happening there. It’s like you’ve ⁓ created a, yeah, a network that’s not a hierarchy of people who are in and out of your home and your life. And I’m curious how that came to be. How did it come to be that there are people who are coming over on Monday?
and Tuesday and Wednesday and showing up ⁓ in a way that is actually good for everyone involved.
Kevan (06:23)
Yeah, that’s a really good way to predict that there’s not a hierarchy. It’s not them just coming to meet my needs, but we are stepping in together. And as a result, because my needs are being met, I get to focus on theirs. And so it’s a mutual ⁓ care for one another, which is what friendship is. ⁓
it’s just maybe cranked up a little bit. But again, that’s a good thing, I think. ⁓ So as far as where it came from or how it originated, ⁓ you know, I have to say it started with my parents. ⁓ I grew up in North Carolina and I’m the youngest of three. ⁓ My sister also has spinal muscular atrophy. so ⁓ growing up in a house with two wheelchairs and
⁓ that’s a lot, ⁓ going on. And, and I think my parents could have very easily and in some ways justifiably just, you know, close the door and, and shuttered the windows and said, we’re going to hunker down and, and just survive and take care of this ourselves. ⁓ but instead they invited
their friends in and ⁓ invited the world in and they sent us out. We went ⁓ to normal everyday classes at school. I played soccer when I was a kid before the other kids were too big and if they ran into me, it’d be catastrophic. But up until then, I played with just normal old soccer. ⁓
went on field trips and went on, ⁓ you know, missions trips with our youth groups and summer camps. And, ⁓ and we also had an open door policy. We got to bring our friends over to the house and, ⁓ even did a few slumber parties at other friends houses. ⁓ and my parents invited their friends into our home and, and what that did, especially for our kind of small town at the time.
⁓ was that it really normalized not just our disability, but normalized the needs that we had ⁓ for the world around us as well as for me. And so I got really comfortable and really used to inviting people into those needs. If I needed a door open, I just ask someone or if I… ⁓
you know, drop my fork or whatever it is, then it’s not making it a big deal, but asking people to help with that. so what that ⁓ and also like my parents had friends who, ⁓ you know, could help with ⁓ my caregiving, you know, so my parents could go away for their 25th and or three, you know, and that kind of thing.
⁓ One of their friends could stay over and take care of my sister and I. And so what that translated to was in ⁓ like near the end of high school, going into college, realizing that I could now invite my peers into my needs at that deeper level. So it went from, you know, can you…
scoop me over or help me with my jacket or whatever to, hey, what if we go on a road trip and you help me ⁓ get ready for bed and get me up in the morning? ⁓ so it just felt like a very natural ⁓ progression because of the ⁓ examples and framework that my parents had set before me.
Amy Julia (10:29)
⁓ I love that and it’s ⁓ inspiring to me as a parent. ⁓ And I’m curious if we could like drill down a little bit on that, because I know in your book you write about a new model of care that you call peer to peer caregiving. And so I just wondered if you could describe that and like practically how that has worked in your life.
I know we talked before we even started recording about how you don’t have a checklist of exactly what other families should be doing. All of us have different circumstances and different social situations and all of that. So I don’t mean it in like a checklist way. But I also said to you that one of the things reading your book did for me as a parent was help to shape my imagination for our daughter, Penny, living outside of our home, not independently, not all by herself, but in an interdependent way with people who would benefit from that alongside her.
And so I would like to just ask if you could, yeah, tell us more to shape our imaginations, not to give us a checklist.
Kevan (11:27)
Yeah. Yeah. Well, ⁓ so peer to peer caregiving. I don’t even know where I like at what point did that term came about. I just kind of started saying it and it kind of stuck. But and I’m sure other people have said it or said it better. But but the idea is ⁓ I’ll tell you where I am now with it. But then we can go back a little bit. ⁓
So the idea of peer-to-peer caregiving is rather than having ⁓ hired professional ⁓ nurses or in-home caregivers coming in and getting hired ⁓ to take care of you, it’s actually just your friends, just your peers. And it’s peer-to-peer because it’s going both ways, as we said earlier.
⁓ that there’s a reciprocality, a mutual caring for one another. I have a lot of guys that get me up in the morning or are involved in our lives and the way that they see it, and I see it as well, is that this is our opportunity to ⁓ have quality time. I had a friend who ⁓ was a pastor
And, you know, lived on the other end of town and was really busy being a pastor. ⁓ and he said, you know, me coming to get you up every other Tuesday is our predictable pattern. So that if, if, you know, we don’t get to touch base any other time, we have that. And, ⁓ and there were mornings that, ⁓ you know, I had additional
things on my heart that I was so happy to see him and work through. And there were days that he was going through really hard stuff and he didn’t say, well, then I’m not going to come. It was, good, I get to be with Kevin and as my friend and we get to work through this. And so that’s kind of the basic idea. Now I do want to back up and say, I don’t think
hiring people is the worst thing in the world. ⁓ And actually my sister has kind of a hybrid of hiring people for some things, but then having friends come in for the other things. And she’s ⁓ done a good job of the people that she hires end up being friends. Or like I used to do ⁓ back when I was in college and we were all just starving artists, know, and musicians.
⁓ using means to hire my friends was a way to care for them. And so ⁓ kind of what happened was in college and right after college, ⁓ through vocational rehabilitation, I was able to hire a couple of friends to help with my caregiving. ⁓ I’ve never
just gone through an agency. Some people do that and that’s fine. for me, I just always wanted my friends to help. And when I moved from North Carolina up here to Indiana, I just really had this burden. And I will say, I think it’s a personal burden ⁓ that ⁓ I don’t want to place on others, but I think it’s something to consider, which is that I felt like, you know,
⁓ All these people, all these guys are my friends helping out and they do get paid and the trickiest, most frustrating and time consuming annoying part of that transaction is them getting paid because we have to deal with the government. And not to mince words, but I was like, so I wonder if I just take that part out and
And it will put more responsibility on me to care for them and to be present because I can’t say, well, you’re getting paid to do this. This is a friend just doing it because they love me. I’m thankful for that season and thankful for those resources. But coming to Indiana, thought, prayerfully, I’m just going to invite people in and never bring up
fund finances, never bring up contracts or anything. I’m just going to say, Hey, would you mind getting me up tomorrow? You know, and, and stepped into that. And that was 11 and a half years ago. ⁓ and, it’s just been really, really amazing, ⁓ to see what that looks like. And I think I say in the book at one point,
You know, you can do it either way or some hybrid of all of that. But what I’ve found in my own life is that, ⁓ because I hear this a lot in the disability community, it’s like, well, I don’t want my friends taking care of me because it gets too messy relationally. So I’m just going to hire people and then, you know, have my friendships over here on the side. And what I found personally is that
whether money is involved or not, all are going to be messy. again, personally, adding a lot of caveat there, but personally, I would rather get into that mess with my friends. And, and so that’s kind of how I ended up in this spot. And, ⁓ just really thankful for how it’s worked out and how it’s, ⁓ now something that I can
point to as like, here’s the love of Christ that I get to experience and invite people into to not just experience from me, but to exercise themselves and I get to experience it from them. So it’s been a wonderful experience of mutual care.
Amy Julia (18:06)
Yeah, and you write beautifully about it. I’m thinking about just the ways in which what you’re saying also hinges upon friendship and that there are ⁓ many people with disabilities, parents of kids with disabilities who would say that loneliness or a lack of friendship is one of the core needs, actually. And in fact, like that if there’s neediness, it’s actually in that area.
I’m just curious if you have any thoughts for parents or individuals with disabilities who are like, yeah, I want friends like that and I don’t have them. Like, I don’t know what to do to actually begin building those relationships, much less asking people for, I mean, maybe the only care I need is actually that relationship, you know? Yeah, so I’m just curious if you have any thoughts on that.
Kevan (18:55)
Yeah, yeah, well, ⁓ I would say a couple of things. The first is to ⁓ what is your position and posture toward your own needs? You know, are you seeing them as a burden? Are you seeing them as an obstacle to those relationships? Or are you seeing them as an opportunity or a tool that you can use? You know, because
For a lot of us, disabilities are not. The hardest part of starting a friendship is, you know, how do you start the conversation? I mean, you look at when you’re in high school and you have a crush on someone, and you’re like, ah, how do I talk to them? You know? Totally. That’s the same with friendships. How do I start this? Well, if you…
If you have a need, inviting someone into that is a great way to start. ⁓ Not always the way to start, but it’s something, you know. ⁓ So seeing your need as a tool or an opportunity is huge as far as your posture toward your own need, because the way you see your need is going to influence and inform how other people see it. Not everyone, but it will, it will help.
Um, and then the other thing I would say is it just takes one. Um, you know, people look at my life and, and the lives of many other people around them or online. And they say, wow, this person’s got all these friends around them or they, like Kevin can only make this happen because he’s got 20 guys, you know, and said, yeah, but when I moved to Indiana, I had one guy, you know, and then a few weeks later.
I had a second guy and then a few weeks later it just, you know, it grows and what I found that’s really beautiful is that ⁓ if you have a couple of people that you’re close with and you’re, you and people see that relationship, then what I’ve had is other guys look on and say, wait, can I be a part of that? You know, and, and so
Don’t set out thinking that you need a whole football team. You just need one friend in a contented, satisfied way. Don’t say, all right, I got one. Now where’s the next? Just really lean into a genuine relationship and go from there and give it.
to the ward, see what happens. Because you may only end up with one or two and that’s great. Or that may grow into four or five or 10. But, you know, I think don’t overwhelm yourself with needing that. And the last thing I would say there is it’s not everybody. It’s not going to work every time. You know, people are going to not want to be a part of it. People are not going to want to
⁓ it’s, that’s unfortunately the world that we live in that you’re going to be misunderstood sometimes or, ⁓ it’s kind of backfire, but for the, and I’ve experienced that. yet for the number of times that it has ended it ended, ⁓ poorly, the, the number of amazing, ⁓
Kingdom of God experiences ⁓ far outweigh it. I can’t give you a specific number, but I mean, it’s a huge, huge difference. And I think it’s worth the risk. ⁓ And for the parents that are listening, as that’s our main audience here, just like my parents did, you can set the example for your kids. ⁓
by inviting your friends into this and into your app.
Amy Julia (23:24)
I love that. I’m kind of cataloging some of the different things that you’ve said over the course of this time. And I want to know if you have anything to add as we start to wind up our far too short conversation. But I wrote down just ask as one just kind of very small takeaway, but I do think a really important one. I also wrote down normalized need that idea that we
we get to be needy. Like that’s just true about who we are. And in fact, it can welcome other people into our lives and into an experience of their own needs. So just ask, normalize need and ⁓ examine your own posture towards need, which I guess those things kind of go together. I also just love what you had to say about, and it just takes one and take the risk. Like the risk of…
disappointment, the risk of mess and the risk of like an ongoing loving mutual relationship, right? All of those things together. I just am curious again, as we kind of come to a close, if there are any ⁓ other things you would add to that list of wise things I’ve heard from you today.
Kevan (24:35)
Hmm. I mean, as far as those first three ⁓ points, I think you could sum them up into saying ⁓ that it’s an invitation. You know, there’s a difference between ⁓ which the way you said it was great, but there is a difference between, you know, asking and inviting or ⁓ getting people to do something or invite. There’s a ⁓ shoulder to shoulder. ⁓
kind of invitation. I like to think of it as my need is a house and I’m saying, let’s walk into this together, ⁓ to ⁓ be together in that space. so, yeah, I think that there’s a lot of opportunity that God’s called us into, if we’re willing to give it a try and take that risk, as you said. So, and right.
people will do that.
Amy Julia (25:37)
So beautiful. ⁓ The way you just talked about it makes me think maybe your need is a house and so is mine and we’re going to get to live next door to each other and visit often. So ⁓ thank you for that invitation and just that picture. And again, for all the parents ⁓ and perhaps individuals with disabilities listening, ⁓ I hope that we each will just take a step into that invitation ⁓ today in response to this conversation. Thank you so much.
Kevan (26:05)
No, thanks.
Amy Julia (26:08)
Thanks so much for joining me here at Take the Next Step. This show is produced in partnership with our friends at Hope Heals, a nonprofit that creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inter-ability communities. I three things I want to mention to you. So one free gift, I told you about this at the beginning, the Connected Community Download. It’s a one-page guide that helps families experiencing disability
map out the connections that matter most. can find the link to that in the show notes. Two, we are collecting questions for an upcoming question and response episode. Again, show notes, click the link, record your question. We’ll answer as many as we can. And three, there are some great conversations in store. So I hope you will stick around, we’ll take the next step. I will be talking with Gillian Benfield, author of Overwhelmed and Grateful, Eric Carter about becoming communities of belonging.
Heather Avis about delighting in our children, and so much more throughout this season. So to make sure you get all of those fabulous conversations, please follow this show. You also can help the algorithm tell other people about it by rating it and reviewing it. And of course, you can personally share this conversation with other people who you know would benefit from it. I love to hear your questions or suggestions. You can send us a text. There’s a link at the end of the show notes. You can email me.
at amyjuliabeckerwriter at gmail.com. And last but not least, I want to thank Jake Hansen for editing this podcast and Amber Beery, my assistant, for doing everything to make sure it happens. And finally, I want to thank you for being here. I hope you leave this time with encouragement to start with delight, connect a community, and take the next small step toward a good future for your family.
