What’s the difference between limitations and brokenness? What does it mean to be blessed? How can a dual diagnosis of Down syndrome and autism be a part of a flourishing life? Micha Boyett, a writer, poet, and mom, joins Amy Julia Becker to talk about her new book Blessed Are the Rest of Us. They explore the intersection of blessing, limits, and longing within the context of the Beatitudes, including:
- The meaning of ‘blessed’ and how it relates to the gifts and challenges of being human
- Flourishing in the midst of grief and hardship
- The importance of insisting on presence and inclusion for people with disabilities
- How to recognize and accept limitations without equating them with brokenness
- Using our imaginations, minds, and bodies to move toward a new vision of the good life
Workshop with Amy Julia: Reimagining Family Life With Disability
Guest Bio:
Micha Boyett is the author of Blessed Are the Rest of Us: How Limits and Longing Make Us Whole. She is cohost of the award-winning The Lucky Few podcast, creator of The Slow Way podcast and newsletter, and has written for publications such as the Washington Post and Christianity Today. Micha lives with her husband and three children in northern New Jersey and works part-time as a youth pastor at Good Shepherd Church in New York City.
Connect Online:
- Website: michaboyett.com
- Instagram: @michaboyett
- Threads: @michaboyett
On the Podcast:
- {The Transition to Adulthood} Amy Julia on the Lucky Few Podcast
- {Living into the Really Real} Micha on Amy Julia’s podcast
- The Beatitudes
- The Sermon on the Mount and Human Flourishing: A Theological Commentary by Jonathan T. Pennington
- Nick Cave on Krista Tippett’s On Being podcast
- Amy Julia’s book White Picket Fences
- The Slow Way podcast and newsletter
- Workshop with Amy Julia: Reimagining Family Life With Disability
YouTube video with closed captions
Note: This transcript is autogenerated using speech recognition software and does contain errors. Please check the corresponding audio before quoting in print.
Amy Julia (4s):
What’s the difference between limitations and brokenness? What does it mean to be blessed? How, can a dual diagnosis of Down syndrome and autism be a part of a flourishing life? I’m Amy Julia Becker, and this is Reimagining, the Good Life A podcast about challenging the assumptions about what makes life good, proclaiming the inherent belovedness of every human being and envisioning a world of belonging. Today I. Get to talk with my friend Micah Boyett, who’s also the author of a beautiful new book, blessed Are, the Rest of Us. Micah is a fantastic writer. If you don’t already subscribe to her newsletter the Slow Way, I would highly recommend that you push pause right now and do so.
Amy Julia (50s):
The link is in the show notes. She’s also a podcast Host for the Lucky Few, one of my favorite podcasts and honestly the Go-to podcast for parents of kids with Down Syndrome. Micah lives with her husband and three children in Northern New Jersey, and she works part-Time as a youth pastor. She is a poet and a writer, and just a beautiful human being. I’m so glad she’s here with us today. One more note before we get started. I do have space in my live virtual Workshop Reimagining family life with disability. So if this episode leaves you asking questions about how your family can live a life of flourishing, this Workshop is a perfect place to work through the messages our culture tells us about disability, and to make a manageable supported plan forward towards a good future.
Amy Julia (1m 41s):
I would love to have you with us, and please tell your friends about this opportunity. I know some of you are not parents of children with disability, and I’m so glad you’re here, but I also imagine that you have people in your life who you could maybe invite into this space that is safe and hopeful. We already have people signed up from all over the nation, a few from across the globe. I’m really excited. I would love for you to be there and you can find out more at Amy Julia Becker dot com slash Workshop or go to the link in the show notes. Okay, now to today’s episode with Micah Boya.
Amy Julia (2m 21s):
Micah, I’m so glad that you’re here.
Micha (2m 24s):
Thanks Amy Julia. I’m so glad to be here with you and we’ve had so many good conversations over the years and yeah, it’s always been such a delight to like share this very particular experience of the world, having a child with Down syndrome, and I just love the way that you think about it and the, the way you write about it. And so it’s a, it’s a real pleasure to be here with you and I love your podcast. I listen every week.
Amy Julia (2m 55s):
Oh, thank you. And actually, for listeners to this podcast, Micah is also a podcast Host in her own right of the lucky few. So we have gotten to be on each other’s podcast Yes. In the past. And we’ll link to some of those conversations in the show notes, both Micah being here before and me being there because if you enjoy this conversation, maybe you’ll like some of those too. And I thought, because we do have such a history of walking together and talking together and, and all of these things, I wanted to start with this conversation with the title of your book because it was one of those where I thought this both sums up so much and it sends my thoughts in all these different directions about blessing and limits and longings and wholeness.
Amy Julia (3m 40s):
And I, I, you know, I wanna cover all of those topics, but I, at the same time, at the very end of the book, in the acknowledgements, you write about some writing friends who helped you recognize that this was not only a memoir or only a reflection on this part of the Bible that I want you to talk about, but it was actually both. And so I would thought that maybe we could start by asking you to tell us about your son Ace and tell us about the Beatitudes. And some people might not know what I mean when I say the words, the Beatitudes, and then tell us how and why Ace and the Beatitudes have come together in this book.
Micha (4m 15s):
Okay. Okay. Well, I’ll tell you about Ace. He’s, when this comes out, he’ll be nine years old. So as we record, he’s almost there. He’s a kid who’s favorite thing in the world, is jumping on the trampoline. He also, second to that is probably dried Mango, his favorite food in the world. He is, he’s, he loves swimming and wrestling and with his brothers and swinging and music. And he also has a dual diagnosis of Down syndrome and autism, which has, has become, it’s a pretty complicated concoction for him.
Micha (5m 1s):
He’s non-speaking, and he has struggled not just to, to find communication through his voice, but to find forms of communication that work for him outside of speech. We signed with him his whole life. And that’s been really hard for him to grab onto. He uses an iPad device, which he’s slowly starting to use, but we’ve been working on it for four years. So there’s, there’s a lot going on. Yeah. And it, you know, there’s just things that, that hold back his communication, like motor planning and being able to attend to the world around him. And so there’s that going on with him. But at the same time, he is like this, he’s kind of magical in his ability to be present and, and like to find delight in the world and show how he feels.
Micha (5m 55s):
He’s, he can show us love and show us his anger. And it feels, both feel right, you know, both feel real in a way that a lot of my experiences with people, and even like my other kids, I, I can see us posing. I can see us leaning into personas that doesn’t exist for Ace. And it’s, his presence with me is like powerful because he’s wholly himself. And I feel like I’m always kind of in this back and forth space of, of like working with all my heart and, and time and resources to help him build skills so that he can thrive in like this brutal world that demands us to communicate, that demands that we move up to these expectations of ability.
Micha (6m 50s):
And, and also like his presence reminds me that there’s an alternative world. And you know, in the book I talk about, I use two different phrases. I use Stephanie Speller phrase, God’s Dream for the World. Yeah. I use Richard Rohrs phrase also the really real, and when I’m using those, I’m thinking about this alternative way of living where our weaknesses are actually the truest things about us, as opposed to the other way that, that most of us live, where the truest things about us are what we can do. And, and that’s how the world judges us.
Micha (7m 32s):
So, you know, I think I’m always kind of thinking about, and as I’ve raised him, I’ve come back over and over to like, how do we create this alternative world where the non-speaking, non literate boy who wants to jump on the trampoline all day, where he’s the most important among us, and what does that look like? So that’s kind of what brought me to the Beatitudes in the first place, was that I, after he was born, I just kind of kept thinking and thinking and thinking of like, what do I believe about what is life means?
Micha (8m 13s):
What, what is my, like what is the most solid and true definition of what it means to be human? And, and I think at these different points of, of realizing even even that his development wasn’t gonna go the way of many people with Down syndrome, who, you know, most people with Down syndrome start speaking at a certain, maybe later than most typical children. But there, there’s, there’s a lot of, of opportunities to live independently in the world. And when those, as those things haven’t come for Ace, I think I’ve gone more and more into like, you know, like you, I think, and we’ve talked about this Amy Julia, like the Amy Julia to all our listeners was there for me when I, she’s the first first person I called when I got my prenatal diagnosis.
Micha (9m 10s):
We were already friends and praise God, because you were there for me that day when I needed you and onward. But I think that in those early days, you are given a diagnosis of Down syndrome and the things that people say to you, or like the, the, the pamphlets you’re handed or whatever it is I in, in this, in our culture right now, as people are trying and trying to, to, to give like a more positive ex their positive experiences of Down syndrome. I was told a lot like, it’s gonna be okay because people with Down syndrome, down syndrome can go to college, do all these things, you know?
Micha (9m 54s):
Yeah. People with Down Syndrome can get married. People with Down Syndrome are, you know, look, this woman’s a lobbyist and this person ran a marathon. And, and I think there’s still like, you just kind of a adjust your barometer of here’s, here’s what, you know, maybe my, my son won’t do this, but he’ll, he can do this. And even, and I think the gift that has come with being like, oh, I’m grieving again. Like I grieved this first time, but now there’s an autism diagnosis. Now there’s like the speech therapist telling me that maybe he’ll never speak, you know, now there’s each thing that has happened.
Micha (10m 37s):
Yeah. I’ve had to go further into this, into my, what do I believe makes him valuable? And it’s not just turning down the dial of like, well, he’s still valuable because someday he may, you know, be the first what, you know, person with Down syndrome to do whatever. But like, he is valuable in his Limits even because of his Limits. And, and so what, like, what does that mean? And so I just kept coming back to the Beatitudes because I think I began to find my footing there, because it always comes back to limits and Longing.
Micha (11m 18s):
And those are the two words that I see over and over in, in the Beatitudes in this portion of Jesus’s teaching. So now that I got there, what are the Beatitudes, tell me about the beat. Thank you. So Jesus’s longest documented Sermon is the Sermon on the Mount in Matthew. And he starts the Sermon out with this, you know, I call it a poem. I think there’s probably theologians who would debate me on that, that, and I’m no theologian, so I’m just, but you’re a poet. So I’m a poet.
Micha (11m 58s):
So they’re, yeah. So there’s, so Jesus kind of uses this structure that was pretty common in that day among Greco-Roman virtue, like, or orator, what are they called? Orator orders, I think they’re just, or orders. Orders. Okay. And, and in that kind of structure where these thinkers would stand up and speak to crowds and say, the good life is, and then they would like list like, this is, this is what the good life is someone, and then they like someone who’s honest, someone who, you know, follows this kind of truth.
Micha (12m 49s):
And so they would list these virtues. And so Jesus is taking that structure and he is kind of turning it on his head before he starts this Sermon that will really like, set the foundation for what his ministry is gonna be and who Yeah. How he’s gonna teach. And the kind of example he’s gonna be of, of who God is. And instead of saying basically, here’s how to be good, which is what the virtue tradition was doing, Jesus is saying here, all of you who are suffering, like you’re, you’ve already got it. You’re, you’ve already got the good life now.
Micha (13m 29s):
Let’s think about that. Yeah. And, and so, so I, I came to these words like, you know, it starts with the poor in spirit, the meek, like these people, the people who don’t have power. Yeah. And, and I would think about Ace when I thought about the porn spirit and the meek, like those who aren’t impressive to the outside world. And then it would circle back to me because every time that I had a longing for Ace, and it, it would look like, oh, we’re not getting there. This is not the story right now. There would be this grief. And, and I felt like I was in this kind of cycle of grief and then being like, Nope, I’m not feeling that we’re going back to therapy.
Micha (14m 16s):
You know, like, I, I’m gonna, I’m gonna make ace be safe in this world. And the way to make him be safe is to get him to figure this out. Mm. And and when it, that was, that was the longing. It was this yearning. And, and you know, I was just listening to this interview with, is it Nick Cave, the musician with Krista Tippett, yeah. And he was talking about yearning and grief and how they’re so interconnected and how that’s the human experience for all of us. We, I mean, I have a particular kind of grief that I’ve lived through in longing for things for Ace.
Micha (14m 60s):
Yeah. But everybody has some kind of grief where, and you live long enough and we will grieve and will grieve and will grieve. Yeah. And, and that, that ache, I, I felt for Ace’s lack of power, I just began to see us both in the Beatitudes so clearly, and, and coming back to the fact that like, Jesus starts his whole ministry by saying, this is what it means to, to be, to flourish, to have a good, the good life to be whole. And and if I’m finding myself there and I’m finding ace there, then, then there’s something deep that God is doing in both of us
Amy Julia (15m 44s):
Through
Micha (15m 45s):
That passage.
Amy Julia (15m 45s):
So I’m thinking about people who’ve like read the Beatitudes and are familiar with them, which is probably most people, even if you’re not from a Christian tradition, there is just a, they’re somewhat of a cultural reference even now. And the word that I at least grew up with hearing the Beatitudes was Blessed. Right? Blessed, Blessed are the poor in spirit. Blessed are the meek Blessed are those who mourn. And you pick up on that word in the title of your book, right. Blessed Are. the Rest of Us. And so I’d love to hear a little bit of just a reflection on blessing. Like, when you use the word blessed, what do you mean? What do you think Jesus meant? You have a, I’m gonna add one more little piece to this question because on page 32, you write about how the word blessed is a word that you’ve removed from your daily life because it’s was such a spiritually rosy coded notion.
Amy Julia (16m 41s):
You say, and you say, I stop believing that a long time ago, but then later on you actually call Ace Blessed. Not just that his life is valuable and, but like that there’s actually a blessing to it. So I just would love for you to like explain what you mean and, and what you think Jesus means by that.
Micha (16m 59s):
Yeah. I, yeah, I do feel like the word blessed is so fraught for me. And I think for a lot of us, I, I, I think even though it’s in the title, I think I spent a lot of the book saying, let’s not call it blessed, let’s call it something else. And, and I found like, even as I found this like kindred connection with the Beatitudes, I struggled with Jesus using that word, Blessed. You know, I kind of joke in the book about hashtag blessed and Right. How it stands for everything. Like, like hashtag blessed, I got a good parking spot and I have helpful children, you know?
Micha (17m 40s):
Yeah. And like, we got a new house with a three car garage. We’re obviously blessed, you know, I, I found it on a pair of, of pajamas in TJ Maxx. Yeah. I, so I think that that what we usually mean when we say blessed is that we’re fortunate and that good things have happened to us. And I think that that’s why the Beatitudes is confusing for people.
Amy Julia (18m 5s):
I mean, ’cause it’s almost the opposite, like in terms of what Jesus is saying, like our popular usage, even in like Christian or spiritual circles is almost like the direct opposite of what it seems Jesus must be getting at. And and that is where I do think that you’re calling this like the Good life belongs to, or the Flourishing life is, is helpful for me in terms of being like, okay, wait, this is not just blessed. Yeah. This is not only hashtag blessed that we’re talking about.
Micha (18m 38s):
That’s the danger of the Beatitudes is that people read it as a transaction. That there’s sort of this, if you are poor in spirit, you will be blessed. Like something is good is gonna happen to you because of it. Or like, if you grieve, there will be some sort of magical surprise that comes from it, or your life’s gonna get better somehow. And I, or, or like, if you long for justice, then God’s gonna be happy with you enough to give you what you want. And so this transactional nature is not, I think that’s the problem with that word blessed and the way we think about it.
Micha (19m 18s):
So one of the things that really opened up my, just opened the passage up for me during my research was finding Jonathan Pennington’s book the, the Sermon on the Mountain humanFlourishing. And he, he is the one who introduced me to this idea of the Greco-Roman virtue poets and how these, these speeches, every time the speaker would, would take this notion of the, they would always be talking about the good life. Here’s what it is to be whole, here’s what it is to be, to flourish as a human. Yeah. And, and so, you know, we could kind of go into the Greek, but I think the case that Pennington makes is that it is an appropriate translation for us to, to say whole or flourishing are the ones who are porn, spirit whole and or Flourishing are the ones who are meek.
Micha (20m 17s):
And to think about it in that way, and I think as we do it, the Beatitudes become less transactional and more compassionate, more Jesus seeing the people in front of him in the moment and naming the pain he saw and saying, you’re, you’re in the middle of God bringing you to wholeness.
Amy Julia (20m 42s):
So here’s a question I have I think related to that. So I was noticing the verb tense in the Beatitudes for anyone who does not have them in front of them, I think this is correct. The opening and closing lines are in the present tense, like it says blessed are, and then it says for these people, theirs is the kingdom of God, like present tense. Yeah. Yeah. and then I think all the ones in the middle are future tense, like, Blessed are these people because they will be satisfied, comforted, shown mercy, that kind of thing. So they’re like two different verb tenses is and will be. Yeah. And I’m curious how you think about it. Like, do you think Jesus is saying you are Blessed here and now, or blessing will come someday?
Amy Julia (21m 29s):
Again, like I, I really wanna get away from that transactional understanding of the Beatitudes or even just an understanding that this is only for the future. Yeah. Like a pro. I, I mean, I do think there are promises embedded throughout like God’s relationship with humanity that have not been fully realized. And yet I also, and I wonder if you have this experience with Ace, I also think there is something true about saying no right now, even in the midst of the mourning, even in the midst of the, you know, grief that you’ve experienced along the way or the, the hardship there is, there is something that is like whole and flourishing and good even there.
Micha (22m 12s):
Yeah. Yeah. I think, you know, this is very Enneagram four of me, but I, I just have no problem saying that it’s both and yeah. That it’s that we’re, we are living at the intersection of like this moment in time when we believe that all things will be made new and, and we also can see the really real and God dream for the world, like, like being made manifest in the present moment. So, and I think Jesus lived at that intersection too. You know, he said the kingdom of God is at hand, and he also said the kingdom of God is like a mustard seed. Like it’s in its present form, it’s here right now, and it looks like one thing, and then there will be a time when it is a flowering plant, and both are true.
Amy Julia (23m 6s):
Yeah.
Micha (23m 7s):
And so, you know, I think that probably culturally it was maybe easier for him to flow back and forth between those two realities in a way that it’s harder for us living now to accept, but I think it’s problematic when we choose one or the other. Like, he’s obviously talking about heaven because these people are suffering and they’re not gonna stop suffering and anytime soon to get the blessing. So the blessing is later or, or this like present tense that can also feel mean like, you know, like you’re, don’t worry, you’re blessed, you’re fine.
Micha (23m 49s):
Yes. Like, you’re like, I know you’re grieving, but it’s, it’s, if you really love God, then you, you should be, you know, rejoicing in all circumstances. Yeah. You should be experiencing spiritual transformation there. So there’s, I think we need both things and, and I think that there’s like somehow, I mean, this is so hard for me to put words to, and I don’t know if I quite can get there in the book, but I, there’s this, this way that our limits and longings live in the core of us. And there’s, there’s this other way where we live in this outside shell shell most of our lives.
Micha (24m 36s):
And that what suffering and struggle does for us is like move us down into the core so that we can really reckon with what’s true about life and God and love. And, and I think that that is our way into the flourishing life, even as we believe like this, this side of the flourishing life is the mustard seed side. And there’s another side that’s like the plant. Yeah. I don’t like how I,
Amy Julia (25m 10s):
I feel like there are these moments in the book where you also give us a vision of the plant, which I think is what Jesus does too. I’m thinking about some Scenes where whether there’s a scene between Ace and his, your oldest son, August, where you and August have gotten into a fight, and then Ace comes in and I don’t know what, I can’t remember what age he is at this time, but he just like puts his body next to August and loves him. Like that’s, it’s just this really tender scene. And I don’t know, I mean, maybe there are some people who would see that scene and say, that’s still the mustard seed in the sense of, you know, there are no words spoken or, you know, ace is still so little, or I don’t, I don’t know.
Amy Julia (25m 53s):
But for me, that’s the plant. Like, that’s the flourishing, blooming beautiful. I, I think this was in, I’m trying to remember, I think it was in my book, white Picket FencesThe, where I spent some time kind of asking or thinking about like, what does it mean to be created in the image of God and landing on the place of it means the capacity to love and be loved. That that is the, at its core, at its core, like what it means. And so that image of like ace loving August in that moment to me seems like the, the flourishing plant. Yes. So to
Micha (26m 28s):
Speak. Yeah. I think that that’s the, the, the notion that I want to get across about who Ace is and, and how he does invite us into like this different way of being alive is these, the moments like that where I, I don’t know what it is. Like I, the Holy spirit, like he’s, he was two years old, barely walking. I was having a panic attack in the hallway and was not present for my son, who is, who was really struggling. And, and he walked right past me, pushed open the door, climbed into my son’s bed, and Yeah.
Micha (27m 13s):
Laid there until, until August was ready to, until really until August could like, take deep breaths again. Yeah. And, and you know, I, in that scene with Ace taking August sock and like chewing on it and August being grossed out because I feel like that’s really important too. Yeah. Like we, it’s, he’s still, he can hold this capacity for love and be fully human and I think we’re always moving back and forth between those. Yeah. It’s a vision of the mustard plant and, and it’s also, we’re in the real world and this, we’re all, we all have our things, you know.
Micha (27m 58s):
So there was something else I was gonna say, but I can’t remember now.
Amy Julia (28m 3s):
Well, maybe it’ll come back. I’m, I’m curious just in thinking about Ace’s presence, because one of the things that you have done, you and Chris, your husband have done is kind of insist that ace b present certainly in your family, but also in school settings where that may the, and you’re, I think, really gracious in the book in writing about how our school systems, when we talk about inclusion, we mean inclusion for a certain type of child. And yet saying no, that that’s actually what we’re gonna insist on. We’re gonna insist on Ace being present. And that his presence, again is a, is a gift that comes with some challenges. Let’s not be pretending about that.
Amy Julia (28m 44s):
So I’m just curious if you could speak about the ways in which Ace’s presence, and you can choose where you wanna go with this in family, in school, in a church community in friendships, has brought some of that different way of being Yeah. Into those spaces.
Micha (29m 5s):
Yeah. Yeah. It is, it, it is such a challenge because public schools are not, public schools were built for a kind of student, a certain kind of student. And when, when kids with disabilities were, were finally welcomed in, which wasn’t until the late seventies there was it, the, the school systems have always been adjusting since then and, but the system was not made for them. Yeah. And so it’s, it’s always a struggle as you’ve experienced too. Amy Julia. Yeah.
Micha (29m 45s):
And the, there are a lot of challenges of, of, I, I don’t know, advocating for him to be in spaces where it’s hard for teachers and schools to see the value of it because it requires so much more of, of staff and more creative thinking of what it means to teach kids who are learning at one level and also include kids who are learning at a different level. But some of the gifts that we have seen in that is just opening up other children’s experience to seeing his value.
Micha (30m 29s):
I went to the color race at, at school, like back in October. Hmm. And ACEs in third grade this year, and he’s tiny. He’s like, he’s the size of a maybe kindergartner, maybe 4-year-old. And he was out there with all his third grade buddies and at the colorways, and if your listeners haven’t experienced this, like you run in a circle and people throw powder colored powder on you, and hopefully you’re wearing a white shirt and then your shirt’s like all cute afterwards. And it’s fun and silly. And so Ace got out there and he’s sort of like, what is this?
Micha (31m 9s):
You know, what are we doing? Right? And he has a couple of buddies in the general ed class that we, you know, he, he’s part of this general ed class in the morning and for art and for, he goes to Spanish and then he, like, then he goes to special education classroom for part of the time, and then he goes back at the end of the day to the general ed classroom. So these kids know him. And I watched them kind of take turns running through this. It was a pretty small path for the color run. So one friend took him and they held hands and Ace was still kind of trying to figure out what was going on.
Micha (31m 50s):
And some big kid came and cut him off and Ace fell down and the other kid who was with him, like helped him stand back up and they, they kept running together and then he traded off and somebody else took Ace and ran the color run with him. And there was almost like a line for who was gonna ride run with Ace through the kind of color run. And when I see that, I think about the way that I was formed by, I had a neighbor who had Down syndrome who was in my grade all through elementary school, through high school. And she was in on the volleyball team with me in elementary school, and we did brownies together.
Micha (32m 32s):
Yeah. And she, she shaped my understanding of disability and I learned how to receive her presence because I think that so many of us who don’t grow up around disability, especially intellectual disability, don’t know how to respond to a person. Yeah. And it, it’s such a gift to offer to, to children. Yeah. And so I think getting to see those kids run the color race with Ace, and even to see that little boy who watched Ace get knocked down and then took the time to help him back up, or Ace was the bat boy for the little league team last spring.
Micha (33m 18s):
Yeah. And he, he had to work hard to like figure out the notion of like going out and getting the bat and bringing it back. But he was really good at hanging it up. And his favorite part though was just hanging out in the dugout. Like he loved being with his friends Yeah. And watching them just talk to each other and sit and feel like he was part of it. And so, you know, I think that anytime we, my friend Heather Avis talks about how we’re any of us who are, are caring for a person with a disability are advocates just like any person living with a disability as a self-advocate.
Micha (34m 1s):
And it doesn’t take doing some special task, like, you know, having a big Instagram account or having a, a job with an organization. It’s showing up at the park with your child and insisting that they belong there and showing up to school with this person you love who is not as easily received. And so living our lives as caregivers for a person with a disability is advocacy. And, you know, I feel that having him show up at, at the baseball game and seeing how these kids are being transformed.
Micha (34m 41s):
So, and sometimes people say, you know, they, he’s just so cute. You know, like it’s kind of the response. And I’ve tended to think that that most people just don’t have the right word yet for what they’re experiencing because it really is, it’s his presence. It’s like he envelops this invitation to the really real Mm. And and I think that that’s what I’m offering when I push for him to be in inclusive spaces. Mm.
Amy Julia (35m 10s):
So this is a little bit of a pivot, but I wanted to hear your thoughts on this. When Penny was young, I was kind of wrestling similarly to you with questions of like, what does it mean to be human? What is there about her experience that is different? Like, I didn’t wanna flatten and say, oh, we’re just the same, but I also, what are the things that are, that do tie our humanity together that I need to understand about her and about me? So asking all those questions. And a friend of mine said, you know, brokenness and limitations are not the same thing. And that was really helpful for me because I think I had put them in the same category in my mind without knowing. And so I was seeing disability as brokenness, and I knew that wasn’t right.
Amy Julia (35m 54s):
Like I, but I couldn’t figure out why it felt so tangled in my mind. Yeah. And so, so adding some distinction between brokenness and limitations was like really, really helpful for me. So I’m wondering if you can speak a little bit about that in terms of like, what do you think the difference is between brokenness and limitations and where have you seen that in your life or in Ace’s life? Are there things that you look at and you say, yeah, I think that might be like brokenness, not just limits. And, and, and in other places other people might see this as brokenness, but it’s really just limits, you know, and we haven’t learned how to receive them yet. Yeah. So what, what, wherever you wanna go with that, but I’d love to hear some of your thoughts.
Micha (36m 33s):
Yeah. The first thing that comes to mind is that each week at my church during confession, our pastor reminds us what sin is. And he always says sin is cutting against the grain of love. And I think that that’s what the difference is for me, is like the world is broken in as in so much as like its systems cut against the grain of love. Systems have chosen power over love. Andy Crouch, like uses the word mammon. And I, I talk about that a little in the book. And that word mammon, he describes as the anti-God impetus that finds its power and money.
Micha (37m 18s):
And he calls it a will at work and history. And, and then he kind of, he says it, it does this thing that allows us to experience power without relationship. And, and those are kind of the ways that I’ve started to think about what brokenness is like in this big sense of a broken world. That’s what’s going on. Like that it’s cutting against the grain of love, whether that’s like in systems that enact racial injustice or economic injustice or, or war. It’s like this power at work in history, and that’s continuing into this moment and it leaks into our lives. Yeah.
Micha (37m 58s):
So, you know, I think that when I participate in systems that oppress, which I do, you know, there are like, there are so many ways that we’re always untangling the ways that we do. Yeah. But those are places where I’m choosing power over love. And I think limitations are something different where, you know, I think I’ve, in the last few years, I’ve had to come to terms with some of my limitations, which, you know, several years ago I had, I had multiple concussions in a row and, and I have these debilitating migraines that come and I’m just kind of like, you know, I wanna say useless, but that’s not like, that’s not helpful language.
Micha (38m 42s):
But I, I can’t really participate in my life when they come. And that is not brokenness, it’s a limitation. It, it’s brokenness. When that, when my frustration and anger that this has happened to me comes out in my relationships and I hurt people with my, with, you know, my lack of presence or my unkindness or, you know, I’m, I am quick to anxiety. I have this anxiety diagnosis that’s a limitation. Mm.
Micha (39m 23s):
But my reaction in if I, if I allow it, and, you know, this is tricky, this is tricky because I think there are times there’s different ways of thinking about how mental health affects us. But there are times when I’m emotionally reactive and I’m not present because the anxiety has taken control. And when there are times that it becomes cutting against the grain of love. So that’s what I was gonna say. Yeah. Yeah. So yeah. When does it become brokenness? When I think it’s, when my limitations are reasons to hurt others or when my pain leaks over into another person’s life
Amy Julia (40m 8s):
And reasons to hurt yourself. Yeah. Yeah. You know, I mean, I think there can be brokenness in our own, I mean, I think you write about this actually a fair amount in this book. Like that sense of not being willing to accept our own limitations is often its own brokenness. Because what that means is we’re constantly saying, I’m not good enough. Yeah. And I just have to work harder in order to be okay rather than understanding an inherent belovedness that comes not because of proving myself. Yeah. And I, I was really struck in, in the chapter called for the ones who release their power, which is related to these ideas you write under God’s reign on Earth, love is not a squishy ideal.
Amy Julia (40m 55s):
It’s a way of being neighbors together. It’s a way of living for the good of everyone. And the only way to accomplish that lofty goal is to reject our dependence on and submission to the power we’ve been taught to hoard for ourselves. And I was so struck by your use of the word dependence on power, because I think I tend to think about dependence on self as a contrast to depending on God, rather than depending on power. But I think that’s helpful because, and what I also wanna say here is I think that the only power that God ever chooses to wield is the power of love.
Amy Julia (41m 36s):
And that’s a really non-coercive, gentle, patient kind power. But it is powerful. Like it’s actually there. That’s the really real right, is that like, this is, this is a power, but it’s incredibly different than the power of the world. And so there’s a sense of we are gonna be dependent upon a power, whether that is the power of mammon or the power of love, and it’s not ever quite going to be myself. Like I’m gonna be kind of caught up in that. And I just really appreciated that meditation really on power and, and what it looks like for us to be dependent upon the power of love rather than the power of mammon.
Amy Julia (42m 22s):
Which I think is related to what you were just saying.
Micha (42m 24s):
Yeah. Yeah. I think so. And I think, you know, you, you wrote so beautifully about this in white Picket FencesThe like that, that dependence on power is so clearly evident for those of us who are reckoning with our own white privilege. And there’s, we, we have grown up connected to this power that has come easily for us. And recognizing our dependence on it is a hard, it’s a, like, it’s a difficult thing to see, and then you start to see it, and then you realize you’ve, you need to start like, you know, un prying your fingers from it because it’s, it’s, what’s the word?
Micha (43m 10s):
Like, you, you know what I’m saying?
Amy Julia (43m 19s):
No, I do. I mean, I think that is the, like I’m the, well you write, this is a quotation about mammon. All of us who have lived subject to mammon have been trained to question the humanity of my son, even if we’re too polite to say it out loud. I mean, there’s like, in terms of just the nefarious effects of clinging to that power that that actually distorts love in and corrupts love, I mean, in our own lives and in and all around us. Yeah. And we see that, I think in, I mean there’s in just a multitude of different ways. Yeah.
Micha (43m 53s):
Yeah. That, yeah. I think there’s, that, that sense of when we believe, I mean, it’s, it’s this wholly like foundational sense of like it’s ableism at its core is kind of how we’ve been taught to live our lives, especially those of us who are achievers and, and who can like earn the praise of others by what we do. And we’re told over and over that what we do is what gives us worth, even if no one says it, they, that’s, that’s how I got all my awards, you know, in, in high school what the harder I worked, the nicer I was, the more that I joined clubs, the more I, I got the like, best girl awards.
Micha (44m 40s):
And, and it is this undercurrent that, that tells us we’re good when we perform. And then then like, you know, for me coming to terms with what that means and how I’ve been living my life, it’s, it’s the opposite of how I want the world to see Ace. And I’ve had to change how I believe, what I believe about myself and what makes me good. Because if, if my goodness is dependent on what I can do achieve, or even how good I can be, how happy I can make God with me, then I am missing the core of what Ace has to give the world.
Amy Julia (45m 23s):
Well, and this I think is related because I’m thinking about, you know, we just recently this, I guess winter and spring renamed this podcast, reimagining the Good Life. And so I wanna ask two questions related to the name of the Podcast, but also to the work you’re doing as we kind of come to a close here. So the first is the Good Life, which you’ve just been talking about, but in the past, what would you say you understood the good life to be? And how has your experience with Ace and studying the Beatitudes changed it?
Micha (45m 52s):
Hmm. I, I have to say that I was very happy with your name change and I think it’s just right on point. Yeah. I think, I think one of the things I’m grateful for is that like, I think my idea of the good life has always been a, a spiritual, like my own, my own understanding of a spiritual wholeness. I think my parents modeled for me the gift of, of a simple life. I never had this like, I will be happy if I can just get rich. I will be happy if I’m a very successful fill in the blank. Yeah. My mom was a teacher, my dad like, was an architect who did small things in a small city.
Micha (46m 37s):
Yeah. And, and that that idea of like loving your community, your family, loving God, like those are things that were really beautiful about how I was raised. And I think I also have had to work to separate that notion from perfection. Yeah. Like, because it was still like, how good can you be at this like, small life? And in childhood I just, I caught on really fast to the fact that adults thought I was good at being a lover of God. It was like my natural tendency. And so I, I just, I found my identity in that, even as a little little girl and struggled with this idea that I could make some kind of dramatic mark in the world for Jesus.
Micha (47m 33s):
That I would finally like land on a life that was good enough for God to, to love it, for God to give that seal of approval. And you know, I think in my twenties I started kind of kicking off the burden of my early understanding of faith. I was questioning everything. I was sort of like the, I, I don’t believe in a God who is like waiting for me to be perfect so that God can love me. But I knew I still always had this, like, someday I’ll reach it, someday I’ll like get there.
Micha (48m 13s):
And yeah. Then I’ll finally like find what this good exists, this good life this. Like, I didn’t have the language of the whole life, but it still was around this idea of I would finally get it right myself. Hmm. I think that having kids in my thirties and also I ra I like those, that decade was spent far from all of our family. So I was raising them, you know, fairly alone. And I think that’s, that really knocked the, like, I’ll fi I’m finally gonna get there. That’s someday I’ll get there.
Micha (48m 53s):
Idea. Like I think the relentlessness and just the monotony of the ordinary and what I felt were my constant parenting failures, I think I started to kind of like grow this new notion of like God shaping my ordinary life into something good outside of my achievements. And I think now in my forties I’m settling more into that. Like, you know, my older kids now can tell me how I failed ’em. And they do sometimes. And it’s, that’s not fun. But I think I’m living more fully in the idea that what makes life good is not perfection.
Micha (49m 34s):
Yeah. That this, this life is always going to ache. And you know, that idea of the kingdom of God is only the mustard seed right now. And we wish it were the whole plant. Yeah. But like the really real is here in the present. It’s not this moment that I’m gonna finally develop all the Wisdom that I Right. I need to have, it’s not gonna come into completion in this like perfect way. I’m just gonna keep aching and keep growing and, and that like, that movement toward wholeness is, is the good life. It’s that process.
Amy Julia (50m 15s):
Hmm. I love that the, that movement towards wholeness is the good life. I, one other thought for you, which is just the idea of the imagination. So part of what I mean when I say reimagining the good life is exactly what you just described, kind of recognizing what culture, whether that’s kind of Christian culture or secular culture tells you is the good life. And then saying, hold on, is that really true? But then also I really have been considering like, what is, what is the spiritual imagination? Like how, how can we use something like the Beatitudes as a guide to reimagining?
Amy Julia (50m 56s):
And I think for me especially, and for you too, like Reimagining not just the good life in a general sense, but the good life for a family that includes children who are not typical. Right. Like how, what does that look like? So I’m, I don’t know, I just thought would love to hear your thoughts about using the imagination. I think the dream of God is related to that, the ways in which Jesus might have been inviting us to use our imaginations in speaking the Beatitudes through his teaching in general. But like, yeah. What does it mean to you to Reimagine the good life in general or in particular?
Micha (51m 32s):
Hmm. Yeah. Well I think that that’s like Jesus was absolutely always inviting people to use their imaginations like that. That’s the way he taught was in story imagination is how we envision a different world. So if we, if we want to believe that it’s possible for there to be a world where mammon is not in charge, where, where those systems of oppression are not the, the things that have the power, then like it’s our imagination that’s gonna take us there. I I think that the spiritual life is meant to be like a dance between our thinking minds and our imaginative minds and our bodies.
Micha (52m 18s):
And so often we keep, we keep it in our thinking minds. And, but I think what Jesus, when Jesus told us stories, like he was living out all of those things. And yeah, I’m really thankful that you’re thinking about the good life in terms of re re-imagination. ’cause I think imagination is really the most underutilized tool in the church. Mm. And I think it’s kind of the beginning of transformation. Like we, we can dream of what could be and then, then we use our thinking minds and our bodies to move towards that vision.
Amy Julia (53m 2s):
I love that. And I think it’s so interesting, at least I think for the two of us, the ways in which God has given us people to help in exactly that, that reimagining too. And I love what you’re saying. It’s, yes, you’ve got this dream or vision, which again, that idea of imagination as an image, right? Like something you can see that maybe has not been called into existence yet, but it’s still kind of visible in some, some way. But living into that with our thinking minds, but also with our bodies. And yeah. I I, I really appreciate those thoughts. I really feel like I’ve asked you about maybe half of the questions I would want to ask about this book because there’s a lot of real richness there.
Amy Julia (53m 49s):
And so hopefully what that means is that people who’ve listened to this conversation will go by the book and will enjoy it. And I would also, and I’ll say this and I’m sure I’ve said this already in the introduction that I haven’t actually recorded yet, but in that I’ll also commend people to find Your Slow Way newsletter because I am a regular subscriber and Love it. Thank you. You get those weekly emails and a lot of them I delete, but I never delete yours because I always wanna read it. And yeah. So we can point people towards that and towards the Lucky Few podcast, but especially towards Blessed Are, the Rest of Us because it’s a beautiful book.
Amy Julia (54m 30s):
Thank
Micha (54m 31s):
You so much.
Amy Julia (54m 35s):
Thanks as always for listening to this episode of Reimagining The Good Life. Please take a second to rate or review it, to share it with others. And don’t forget to subscribe. You can get email updates, learn about more details related to the Reimagining family life with disability Workshop. And please reach out to me if you have thoughts, feedback, ideas about this podcast. My email is Amy Julia Becker [email protected]. I wanna conclude by thanking Jake Hanson for editing this podcast. And Amber Beery my social media coordinator for doing everything else to make sure it happens as we go into our day. Today I.
Amy Julia (55m 16s):
Hope this conversation helps you to challenge assumptions, proclaim belovedness, and envision a world of belonging. Let’s Reimagine the good life together.
Learn more with Amy Julia:
- Workshop: Reimagining Family Life with Disability
- BOOK: To Be Made Well: An Invitation to Wholeness, Healing, and Hope
- BOOK: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
- S6 E17 | Questions for a Life Worth Living with Matt Croasmun
- S6 E3 | Down Syndrome and Belonging with Heather Avis
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