MENTIONED IN THIS EPISODE:

• 99 Balloons
• Amy Julia’s Vox essay: My daughter has Down syndrome. Would I “cure” her if I could?
• NYT Essay by Emily May: Kennedy Described My Daughter’s Reality
• I Corinthians 12, Exodus 4, and John 9:3
• Hans Reinders
• RFK Jr.’s statements about autism

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WATCH this conversation on YouTube by clicking here. 

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ABOUT:

When Matthew and his wife Ginny were 30 weeks pregnant, they learned their son Eliot had trisomy 18. Eliot was born eight weeks later and lived for 99 days. The Mooneys founded 99 Balloons, a nonprofit supporting individuals with disabilities locally and globally. 

Matthew now serves on the 99 Balloons Board and lives in Fayetteville, Arkansas, with Ginny and their three children—Hazel, Anders, and Lena. 

A writer, speaker, and consultant on disability and inclusion, Matthew is also an attorney and a PhD candidate in Theological Ethics at Aberdeen University. His work has taken him to Haiti, Mexico, Ukraine, Uganda, India, and beyond.

Websites: 99 Balloons :: matthewlylemooney 
Social: insta 

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Note: This transcript is autogenerated and does contain errors. Please check the corresponding audio before quoting in print.

Amy Julia (00:05)
Is disability a tragedy? Is it a gift? What place is there for grief and for joy in this story of disability that so many of us are living within our families? 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 where everyone matters.

Today I’m talking with Matt Mooney, co-founder of 99 Balloons, an organization that works with persons experiencing disability in over 50 locations across 13 states in the United States, as well as sites in Australia and Canada. Matt is also working on a PhD in theological ethics, and he has an autistic daughter, Lena. You’ll get to hear more about Matt’s story and his thinking in just a minute, but I wanted to give a little context for our conversation. So I reached out to Matt.

after RFK Jr., the current head of the Department of Health and Human Services, made public remarks in which he called autism a tragedy that destroys families. So I wanted some help naming the problematic thinking behind RFK’s remarks, but I also wanted some help considering why so many parents of disabled kids might find solace in what RFK had to say. I read a beautiful essay by Emily May titled,

Kennedy described my daughter’s reality. There’s an essay she wrote for the New York Times where she, this is her writing. Kennedy’s remarks echo the reality and pain of a subset of parents of children with autism who feel left out of much of the conversation around the condition. Many advocacy groups focus so much on acceptance, inclusion, and celebrating neurodiversity that it can feel as if they’re avoiding uncomfortable truths about children like mine.

I’ll link to her essay in the show notes and I do commend it to you. I’ve been thinking about these issues myself for many years. Even though I do not have a child with autism, I do have a child with an intellectual disability with Down syndrome. Will Penny have Down syndrome in heaven is a question I asked myself after she was born. It’s one that other people ask me regularly. I wrote an essay for Vox a few years back.

about whether or not I would cure Penny of Down syndrome if I could. And I’ll link to that essay in the show notes if you want a little more of my thinking. But all of this pondering, plus the lived experience of a child with an intellectual disability and our introduction to the disability community more broadly, it’s led me to a few conclusions, even though I still have so many ongoing questions. Here are the few conclusions that I have reached. One, that human brokenness

and human limitations are not the same thing. Two, disability and suffering are not the same thing. Three, every human has limitations, brokenness and possibility. And finally, four, I will never have all the answers to all the questions. So that leads me back and Matt speaks well to this in this episode, leads me back to the relationships.

that are actually at the heart of the matter. Our approach to disability as a society needs to make space for both lament and celebration, sorrow and joy, grief and embrace. I hope this conversation at least helps us to head in that direction. Thanks for joining us.

Hello, Matt. Thank you so much for being here with me today.

Matt (03:48)
Hello, hello.

Amy Julia (03:50)
⁓ all right, so Matt and ⁓ His wife Jenny are the co-founders of 99 balloons and I wanted to start with 99 balloons because this organization if you go to their website and we’ll link to it in the show notes States that the vision is to change the story of disability by proclaiming the worth and image bearing beauty of each and every human being So we’ll get back to the vision. But first, you just tell us the story of 99 balloons?

Matt (04:19)
Well, this happens to be the story of our lives, ⁓ which is ⁓ to fast forward you through some of life. ⁓ Our first child, when Ginny and I were first pregnant a few gray hairs ago, I believe it was about 37, 36, 37 weeks pregnant. ⁓ We were kind of ushered into a doctor’s office and it was all…

all fun and games and newborn baby fun. And then it took a little turn, you know, and one doctor became three doctors and they walked it down with their heads down very slowly. And without words, we knew in that moment that something had changed. We didn’t quite know what. And so they began to give us a diagnosis, not that day, but over time, you know, that that day they told us things aren’t looking good. We don’t quite know what.

got a lot of work to do here to figure things out. so we began the journey that day of figuring out that our child would have a condition called trisomy 18. So many people are familiar as you are with Down syndrome, which is trisomy 21. So this is three instead of two chromosomes on what would be the 18th pair. So ⁓ we found out again, while we were pregnant and we were kind of told to this child may not make it to birth.

this child may make it to birth. This child may live for seconds, may live for minutes, may live for days we don’t really know until this child gets here. So we didn’t know if it was boy or girl. Fast forward, it was a beautiful boy named Elliot and Elliot lived for 99 days. And Elliot’s life required around the clock care. ⁓ so that was that was an introduction to us of a different world, a different reality, really a time for our faith to

see where we stood. And, so that was, that was Elliot. And to fast forward you through a lot, we started an organization called 99 Balloons, ⁓ out of Elliot’s life, as you referenced the website. And so now we have the beautiful reality of living in community with people with disability through it. and we also have a daughter, ⁓ that we got to know through 99 Balloons and adopted from Ukraine named Lena.

Lena is 18. We will probably talk a little bit about Lena. She might be most of my stories today, but she has profound autism. You know, she is, does not use words. She uses a few signs. She uses a device. She probably has about 20 to 30 words. uses consistently on that device. She could use more, but she doesn’t want to. And she’s a joy. She’s a beautiful reality of our family. It is complicated. We have two other typical

kiddos, Hazel and Anders. So we’re a family of four today, having lost one. ⁓ Sorry, a family of five today, having lost one. And it’s complicated. I can’t count.

Amy Julia (07:24)
Well, thank you just for giving us that sense. Tell us a little bit about like the work of 99 Balloons and then let’s talk about the vision. But like what on a practical level, what are you all doing through that organization?

Matt (07:37)
So we primarily work with churches to help them build relationships with people with disability in their community. do that through a variety of ways. We do that stateside. We do work globally as a reference earlier as well. And so a couple examples of what we do. We have a night called recess that we train and equip churches so that they can provide respite for children with a disability and all their siblings.

the whole kind of serves the whole family. So that’s recess. We have a lot of recessed churches throughout the United States, Canada, Australia. So we get to get to be a part of a giant community, having a lot of fun. And again, keeping the center central focus on helping them build relationships through recess. And then we have an adult model of ministry called befriend a one to one friendship model of being paired into relationship with adults with disability.

So it’s a great filter. We work with some of the best folks.

Amy Julia (08:40)
I bet. So within that, in terms of the vision for 99 Balloons, it’s to change the story of disability by proclaiming the worth and image-bearing beauty of each and That’s a tongue twister. Yeah, it is. But so why, what prompted that sense of a need to change the story of disability?

Matt (09:03)
Yeah. So as I talk and as I gave you my brief history there, you know, I shuffle three hats and sometimes I confuse people because I shuffle them, but I am a father. I am approaching this discussion and I think of all things disability through being a Christian, through being a theologian, studying, doing some PhD work now with that at Aberdeen, which has been beautiful and fun.

So I shuffle between father, kind of theologian, if you will, and someone immersed into, just commute. I have dozens and dozens of friends with what we’ll talk about today. And so I shuffle all of those hats, but ⁓ why do I think the story of disability needs to change or why is that the vernacular that we’re using? And I think, here’s what I think, in America, most people,

When they think of disability, first of all, they don’t have a relationship with the person experiencing profound disability, most likely right here in America. And they think that things are going pretty good, right? They have some basis in their mind of what the past treatment was, and that was bad. And now they think, well, good gracious, people with disability get all the best parking spots. I mean, that’s great. That’s a good thing. Look how far we’ve come. Or they might think of their church and they might hear of

some work, like what we just talked about, our church is providing respite for kids with disability in our community. Man, what a cute thing. That’s so neat. So to be honest, I think that that is the typical thought process of disability. as someone, again, immersed in relationships, just totally graced with a community of people

with disability, I would say that there absolutely has been great things that have happened over time for my friends with disability and for rights and ⁓ for things that have been championed. And I’m happy about that. But I think from my view of being a father and from my view of having many relationships with people with disability, I believe that the story of the disabled community, the story that

that is happening, whether it be in America or it be right here in our town. I’m in Fayetteville, Arkansas. So right here in my town, the story of disabilities, if you look at it historically, and if you look at it currently, has not done a 180. It has not turned around. And that would be ⁓ that people with disability are marginalized, that people with disability are isolated. ⁓

And ours is a world that seeks to eliminate or normalize disability. And what I mean by normalize, that’s a particular word in disability space. And I mean something different when I say it. I gotta, I gotta put an asterisk. I mean, to take the difference away. That the world, the world seeks to eliminate or make normal, gravitate to what we consider normal.

Amy Julia (12:28)
Yeah.

Matt (12:29)
towards people with disability. And that is the story that I think must change. I think that people with disabilities have gifts in our churches. I believe they have ministries that we need. ⁓ And I believe the way to that change is through relationships.

Amy Julia (12:47)
All right. Well, we’re going to get to talk about all of those things a little bit more and I really appreciate that ⁓ idea of I find this with my children as a parent that I when they are experiencing something that I’m not quite sure how to help them with some emotion that I can’t or I feel like I either am supposed to fix the problem that is causing them to feel sad or angry or to minimize

the fact that they feel sad or angry. And I feel like that’s a little bit what you’re saying in terms of as a culture, we want to either eliminate like, okay, which in this would be like, fix the problem, like, no, let’s just make it go away, or essentially pretend that it’s not what it is. And if, and there’s a middle way I have learned as a mother of saying, I’m so sorry that you feel sad right now. And I’m just going to sit with you in that, like, and again, that idea of like relationship actually being what we’re invited into and some of those

complex, sometimes challenging, sometimes, you know, we’ve got lives of disability that involve suffering, we’ve got lives that involve joy, there’s all the human emotions and realities. ⁓ But that idea of like actually sitting together, walking together, being together, being with in the midst of a nuanced, complex, and sometimes hard reality is hard for us as humans. And, ⁓ and yet when we do that, I do think there’s great like beauty that can come from it.

So, all right, sorry, my little soapbox there. ⁓ I am with you, as you know, in a desire to re-narrate or as this podcast hints at, reimagine disability. And so I’ve, for a long time, wanted to talk about how we ⁓ tell a story of disability. But the recent comments that ⁓ are, what is he, the Director of Health and Human Services, ⁓ RFK Jr. made, the comments he made about the autism community,

are what finally prompted me to reach out to you and say, can we have this conversation? So we’re gonna insert the clip here of RFK’s comments so you can all listen along.

Matt (14:56)
This is an individual tragedy as well. Autism destroys families. More importantly, it destroys our greatest resource, which are children. These are children who should not be suffering like this. These are kids who, many of them, were fully functional and regressed because of some environmental exposure into autism when they’re two years old. And these are kids who will

never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date, many of them will never use a toilet unassisted.

Amy Julia (15:42)
I just want to ask you, what story of disability do you hear RFK Jr. telling and where do think that story comes from?

Matt (15:52)
Well, well, well, here we go. First of all, you know, a question you didn’t ask, but I do not consider myself a conservative. I do not consider myself a liberal. And I think that’s important because this conversation is so tribalized that people are just looking for cues on where’s this guy coming from? Which one of those camps is he coming from? Yeah. And I don’t consider myself politically either one of those. I’m going to try to give

RFK the widest, biggest amount of grace that I can muster. And to be fair, I do not know that he deserves that. do not know the guy. There’s a million ways I could take it the worst way. I’m going to fill in the gaps with just the best possible scenario, which still, which still, by the way, isn’t a great story. ⁓ I love that ⁓ people are talking about autism. I don’t necessarily love the catalyst, but I love that we’re talking about it because

Amy Julia (16:38)
Yeah.

Matt (16:50)
I believe that the story that RFK is going in front of cameras and putting on the record ⁓ is the way that most people in America, ⁓ and dare say most people in our churches, this is the way that they think about disability broadly and autism in particular. And I actually went back to his words, you know, I wanted to actually think

a little deeper than I might be tempted to ⁓ about, you what is it they say it? So I think he’s saying, you know, that autism and for that matter, probably Down syndrome, Rubekulzy, a little bit broader, most likely. And on and on is tragic. It is sad and it is a terrible thing that needs to be fixed, that needs to be remedied, that needs to be cured in church lingo, that needs to be cured. And while we’re at it, ⁓

Amy Julia (17:21)
Yeah.

Matt (17:46)
you know, the way that the, that the church would kind of spin the exact same thing that he’s saying is that disability is a tragic effect of the fall. so it, but he continues to go from there because not only is it sad, but it is dangerous. ⁓ It needs to be eradicated. so his words, it destroys families, destroys children, produces great suffering. ⁓ So then after kind of hitting the pity button,

He goes straight and lays on the good old American meritocracy horn and he lays on it. So they will not pay taxes. They will not hold a job. They will not play baseball. And so he conflates very quickly. He’s doing a lot of moves and he conflates the pity. ⁓ He conflates the worth of and he conflates the cost.

Amy Julia (18:37)
Yeah.

Matt (18:41)
When I look at it, I see those three narratives, kind of this pity, sadness narrative, connecting them to the worth narrative, connecting them to the causation. And again, giving him the benefit of the doubt, not putting devil horns on him. But I do think that a lot of people think this way. And I think that you and I, you’re a mom of a child with disability, so many more things, but you’re involved in this community. I’m a father.

You and I got to know each other at a great camp of our friends called Hope Hills where we’re just surrounded by people with disability. Yeah, and it’s beautiful and wonderful and This is our lives, but but I I want to remind I always want to remind people Who are in the spaces that we’re in and are graced with people with disability in our lives there was a time when we weren’t there and

those relationships, and this is why I’m so passionate about relationships and having actual relationships with people with disability, those relationships changed us. And they changed the way we thought, they changed who we are. And so ⁓ his story is that autism is sad and tragic, and therefore we are responsible to do something about it in order to alleviate the suffering of those with disabilities and their families. ⁓

And so your second question was, where did this come from? And I certainly, and we might want to do this. You could go historical on that. I think I just, I kind of want to go to the opposite just to say, of course he thinks this way. This is the cultural modernity air that we breathe. Again, not many people will state it, but like if you live in the disability community, you come up against this all the time.

I can take my daughter to the grocery store. ⁓ And she is, everybody knows that there’s no, there’s no hidden disability with Lena. She’s gonna, she’s gonna be doing many things that give you signals that she’s got autism, cerebral palsy, and the list keeps going. But you know, I will get this all the time. What a great dad I am. By taking my daughter to the grocery store, what a great dad I am. Now,

Amy Julia (20:53)
Mm-hmm

Yeah.

Matt (20:59)
To me, that is super nice. And I’m not going to rip anybody a new one for that. ⁓ Though I am on this podcast about to. what a pathetic bar that you have for humanity. And for me as a father, that you think me taking my daughter with autism to the grocery store makes me a great father. That is the pity tragedy narrative that we encounter and we live out from well-meaning nice people everywhere.

Amy Julia (21:27)
Yeah.

Matt (21:28)
He is speaking so much of the air that we breathe and the way that people think about disability that often goes unnoticed, unspoken, we’re uncomfortable talking about it. ⁓ so there is definitely some historical context that is important, but I kind of thought of it the other way.

Amy Julia (21:53)
Yeah, I really appreciate that. And I want to get back to your story with Elliot and with Lena and 99 Balloons, but I thought it might be helpful to insert here. For me, it has been helpful to have some frameworks for thinking about disability and the way I’ve understood that there more than these out there in like the scholarly literature. But the two that have been the most helpful for me have been what’s called the medical model of disability and the social model of disability. And I’ll just spell those out for listeners who aren’t familiar with them. So.

As I understand them, the medical model is the idea that disability resides within an individual, within an individual body or mind. And in this model, disability is a problem that needs fixing so that the body or mind can come back to the norm. And I think you’ve already spoken a lot to that way of understanding disability. There’s another way of understanding it called the social model where disability is a social reality.

So you’ve got a body or a mind that doesn’t fit within the structure of our society. So in that realm, the problem, quote unquote, of disability is from the culture. The culture is the problem, shunning, stigmatizing a disabled person, their family. ⁓ And the problem comes from a world that’s not built, whether that is, you are a ⁓ person who’s deaf and you can’t understand and communicate, not because you can’t understand and communicate, but because the person you’re ⁓

with does not speak sign language. Or ⁓ we could kind of go down the list, ⁓ again, historically speaking, and listeners have heard me use this example before, but you use a wheelchair and the curb does not actually have an indentation in it, so you can’t get across the street. is the problem? You or is the problem the way the city has been built? So those to me have been really helpful.

partially because I grew up with such a medical understanding of disability as we’ve been talking about. And then when Penny came into our lives, I had so many questions about, wait, she does not seem to be the problem here. I don’t understand. Like, she’s happy. We aren’t experiencing a lot of suffering. And we can talk more about that piece of disability in a minute. But ⁓

And so I started to also feel really grateful for a bigger understanding of kind of our social perceptions of disability and the part I play in perpetuating a way of being in the world that doesn’t make room for Lena or for Penny. And it doesn’t, I mean, I now assume that I have a lot to gain from knowing Lena, Penny and on down the list. did not, that’s not how I saw it 20 years ago. I thought they would have a lot to gain by becoming like me.

which again, I think is what we’re seeing in what are often well-meaning attitudes and comments. So I’m curious if you could speak a little bit to like the medical model, the social model, if there are helpful and unhelpful aspects of these ways of understanding disability as you see it.

Matt (24:54)
Yeah, I think you, you, you explained it well. think, as I, as I think about it, where we locate the problem determines where we locate the solution. So when you locate the problem within the body, the solution is always medical. It’s always, we need to make that better, get it back to what it could be.

You know, what we think of as good. The medical model is, is it helps when there’s an answer. I think the medical model falls short with so many of our friends with disabilities and it’s, it’s not helpful. it’s not helpful with long-term chronic ongoing things that the medical community can’t solve, which is our world. Like that, that is our world. So the medical model becomes completely unhelpful, but

So the social model is super helpful and it’s been devised and championed by lot of disabled self-advocates, the disability rights movement. And by the way, just a note, listen to disabled voices. When I say relationship, is the push that I am making that we would listen to people with disabilities and what they’re having to say. And the social model is one of the things over the last few decades that they have had to say.

And the social model has produced a lot of good in our society, you know, that the just the accessibility of buildings and things such as this, they were coming out of the social model. The problem that I’m in a wheelchair is not actually the problem if I can’t get in your building. It’s that when you built your building, you built 20 stairs, right? That so where we locate the problem determines where the solution comes from.

So, the social model, these are just two ways of thinking and the social model, ⁓ it falls short a little bit. And I’m gonna kind of broaden the discussion of just the social model too, ⁓ kind of, it is championed by rights and social justice. So when we think of rights and social justice and the social model, ⁓ then you begin to,

particularly as a Christian, you begin to see how the social model falls short. And what I mean by that, a rights-based conversation will never get us to where I believe the church is called to be when it comes to our friends with disability. And when we have a rights-based conversation, ⁓ what that means in disability spaces, if you can use your voice,

and you can assert your rights, then you too have rights in our society and we will be on board with those rights. The problem with some of that in disability space is there are people with disability who are not going to assert their rights and they’re not going to use their voice on their own behalf. That is not their game. And so that is one kind of issue with the social model. And then just

Just as we think and we talk about, and for me, theologian hat, as we think and we talk about what is the church called to? What is it that we’re supposed to do? Inclusion and equal rights is the absolute floor for the church, not the aspiration, right? In 1 Corinthians 12, you know, I love this verse. 1 Corinthians 12 says this, says, the eye cannot say to the hand, I have no need of you.

nor can the head say to the feet, have no need of you. On the contrary, the parts of the body that seem to be weaker are indispensable. And on those parts of the body that we think less honorable, we bestow the greater honor. so the world, what they look down on, we’re given a word picture of what the body of Christ is. How do you know the body of Christ when you see it in the world? Well, here’s how you’re gonna know it.

you’re gonna know it because they’re gonna bestow greater honor on the very things that the world looks down on. The church’s calling is one not of equal rights. The church’s calling is one of sacrifice, of laying our own rights down, of esteeming others higher than ourselves, particularly the very ones that the world looks down on. So to me, inclusion is a terrible game for the church.

And Hans Reinders is a good reference for this, if you’re familiar with him. But when we talk about building, what inclusion can never do, inclusion can get you in the room, but it can’t make you have a relationship, a freely given relationship of love. That’s not inclusion. That’s like way beyond inclusion. And that’s the calling of the church with our friends with disabilities is to know them and to

love them and to freely offer relationships whereby we may not, we may lay our own rights down. And that’s something I never honestly expect the world to do. That’s not the world’s game. That’s the church’s game. And let me be the first to say, ⁓ the church has been terrible at it. And, ⁓ I love the church. I’m part of the church. So I speak as a we, but we’ve been awful at

Amy Julia (30:30)
Yeah, gosh, there’s so much that I want to respond to and thinking through. Just the so much of it has to do with your vantage point in the sense, not just of what we were saying about the individual versus the society, but also if we start with that image of the body of Christ and the assumption that everyone has value.

And there may be times where we’ve been culturally conditioned and we cannot understand what that value is, but assuming that that’s my problem, like that I am the one who does not have eyes to see as opposed to, then that must mean that unless you change, you’re not kind of equal to me or good enough for me or something like that. Since you brought up 1 Corinthians 12 and just the idea of how theologians might understand disability,

One thing that has come up over and over and over again in my life as a Christian and as Penny’s mom is that many religious people, as you’ve already mentioned, see disability as a sign of brokenness and the brokenness that exists within our fallen world. Kind of pure and simple. And so it really is something that we would want God to cure, whether on this side of heaven or the other.

Certainly many non-religious people also see disability as a tragedy or a sign of brokenness from just like a molecular, genetic standpoint. But in either case, that’s very different than what we’re talking about. But can you speak to what’s problematic, whether it’s the secular or the religious view of disability as brokenness?

Matt (32:09)
Yeah,

I believe that my friends with disability and the families that I know experiencing disability are a prophetic voice in our world, reminding the world that the good life is not found in how well you navigate away from what you perceive as pain and suffering.

the conversation of disability really begins to force like, what do you really believe and what are you really seeking? And really where are your desires, right? Because, and that is why relationships with disability, that is why it’s such a grace that you have Penny, that I have Lena in our lives, because otherwise we’d be running in a different direction. This is not the direction we would have otherwise run, right? We had to be interrupted.

And I’m so thankful that I’ve been interrupted. But I’ll speak to followers of Christ and listen, the way is narrow. So even though it’s ⁓ popular in America to quote unquote be a Christian, I think it still is, the way is narrow. So it’s one thing to want power and be a Christian, it’s another thing to lay it down and to sacrifice. And that’s a different calling. But if all that we have,

to say to the world about disability as followers and believers of Jesus is that it’s a tragic effect of the fall. ⁓ You know, that’s not wrong is what’s tricky. And what’s subtle about that is it’s just really, really missing the point. And what I mean by that, Amy Julia, you and I, our lives are in effect of the fall, right?

But what we mean when we say that is that what we mean is that your life is further removed from ideal than mine in some way. Your life is more tragic than mine. And that, that I will stand up against all day. I do not believe that. I believe

Amy Julia (34:14)
Right.

Can

interrupt you for a second? Would you say that every human life is a tragic result of the fall? And when we only talk that way, when it applies to people with disabilities, we are getting something incredibly wrong in our understanding of what it means to be human.

Matt (34:27)
Absolutely.

Yes, you got it. My life is a tragic effect of the fall. And when I stand my life up against another’s and say there’s their life is more. I’m certainly prone to be building an idol factory that looks a lot like me. And that and that is what happens when we do that. And so and that that is that is the game. The thing that we have to be aware of and and I responded to RFK’s. ⁓

thing on some Instagram and I got lots of feedback. But it’s healthy to disagree, by the way. It’s okay. in a good world, we should be disagreeing healthily, kind and loving. I don’t mind disagreement. I welcome it. I think it’s a good thing. I hope we talk more and disagree more and go deeper with more people. ⁓ But the church has such a better, more rich story to tell than disability is a tragic effect of the fall.

⁓ Let me give me another scripture, deal with this one. Exodus 4, I got to read it. The Lord said to him, who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord? Now, that one is tough. People will maybe struggle with that one. And I have…

tremendous sympathy and grace for that. That might bring up all sorts of questions for you. But I’m using that to say in the New Testament, another one, John 3, the disciples, like the good guys, they completely got it wrong when they came across a person with disability said, who’s sinned? This person or his parents, right? And Jesus looks at them and says, no, no, no, like this happens so that the works of God could be displayed, right?

you’re looking for causation when you should be looking for God, right? And instead of people with disability or tragic effect of the fall, we as Christians have so much more of a beautiful story to say, hey, God makes human beings in his image. God makes good things. What might God be saying through the life of this person in front of me?

Amy Julia (36:57)
Yeah.

Matt (37:04)
That’s so much more biblically sound and also more beautiful.

Amy Julia (37:10)
Right. I think for me, this one of the early lessons that I, I don’t know if it’s a lesson I learned or distinctions that became helpful to me was that there’s a difference between brokenness and limitation. And in fact, my understanding, my unquestioned understanding of kind of ideal humanity when Penny was first born was definitely one that really had no limits.

It also had no brokenness, whatever that might mean, but had no limits. And I came to believe very differently that actually as humans, are given limitations, different ones within different ones of us for a variety of reasons. But that that is a part of actually God’s good creation. And I don’t know where the line is in terms of ⁓ those limits. don’t know what we say about, you know, a

There is suffering that is associated with often with disability and I don’t believe that that is part of God’s good design. At the same time, I would not be willing to say that God, exactly what you just read from Exodus, that God has never created someone blind, mute, deaf, with Down syndrome, that that’s not also a part of God’s good creation because sometimes what I can say is, yeah, there are limits there that I don’t experience.

And there are also limits that I do experience that lots of other people don’t. And I just don’t want to be in the business of assessing, ⁓ assessing human brokenness, I guess. And so I think my question for you, I mean, respond however you want, but I am trying to acknowledge the suffering that can be associated with disability. And I think that’s some of what RFK was speaking to and wanting to actually do something about that.

And yet the way in which he did that, and this often happens, was to diminish the worth, the image-bearing beauty, to use your phrase, of disabled people very broadly. And I don’t want to do that either. So how do we talk about suffering and disability while holding on to the inherent worth, keeping away from pity, and not trying to…

identify a cause that we’re supposed to fix.

Matt (39:33)
Yeah, great question. you know, when you look at our story, we lost our son because of disability. the worst, most terrible, hardest thing I’m still walking through. Lena, you know, I don’t share with the world the hard parts of Lena, not because I don’t feel like I can, it’s not her story and not mine. It’s some mine and I feel free to, if you want to go to coffee with me.

Amy Julia (40:03)
Right.

Matt (40:03)
But I’ll suffice it to say, like Lena has real meltdowns. Lena has self-injurious behaviors. Lena has very hard days that affect our whole family a lot. So it is difficult. want to always be, I am not saying, let’s don’t pretend like things aren’t hard. Let’s don’t pretend like they’re suffering. I’m saying the human life includes hard things.

suffering. And if you try to find a way out of it, you become miserable. And if you if you will live the life that is in front of you, I believe that you can find beauty in that and that there is meaning and beauty in that. so

I think I’m going to take you, is through an experience or through many experiences with dozens of dozens of families through 99 Balloons. I’m going to, this one’s going to go, we’re going to deep dive on this thought. When families get a diagnosis, when families have a child with disability and they’re getting that, they go through grief. They should go through grief.

The best families that I know that have disability in their family, they have walked through grief because of it. And Jenny and I, my wife and I define grief as when the reality of life does not meet the expectations that you had. When there’s a gap between those two things, there is something to grieve and you should grieve it. Okay? So our families, I…

I tell them all the time, I get to have this conversation all the time. Man, like I understand that you’re experiencing grief in that. I experienced grief in that and it’s okay because that is a really mind altering hard place for a parent to be because you are on guard and you are already aware from day one. Like, well, wait now, like I love my child with my

heart. is not a fiber of my being that doesn’t love, and I know you love Penny the same way. There’s not a fiber of my being that doesn’t love Lena Mooney. I love her so much.

And yet, ⁓ when you have this grief of a diagnosis, and Lena was adopted, so we skipped a little bit of that. It’s a little bit different. But when you have that as a family, like we had with Elliot, this is not what I expected. There’s a time to grieve that. I think that families experiencing that, I have the utmost grace and love and tender spot for families that are walking through.

just the hardest things, you know? And those are the ones that got mad at me, right? When I say, when I said autism is not tragic, is I said, you know, I took all kinds of bullets from those families. I understand that. I love those families and I have tremendous grace for what they’re experiencing. There is something to grieve there, but that is a very, that’s a very hard concept to walk through because you, both you love this child with all your heart and you have something to grieve. So there’s just this tension of that.

saying that, having said that, when a family grieves, we should come alongside them in that grief as the church or just as friends in a community. Like that is what we should do. But I emphatically think this, that was all the buildup to get to this. Our churches, our societies and our communities, when they meet our children, they have nothing to grieve. That is not experience they should be having of our children.

Amy Julia (44:04)
the

Matt (44:07)
They should never have had expectations for what my child and who my child was. The responsibility of our churches and of our society and of our cultures when they meet our children is to embrace them, to provide them whatever support they need, to meet them just as they are. Not, and that’s where it’s off putting, not to grieve Lena.

Cause when you start grieving Lena, I’m like, what are you doing? No, no, no, no, no, no. Like in my experience today, day in and day out is not grief of Lena, right? I had to walk through that. That is something I had to go through. But when, when I, when, when she is experienced in the world, that is so it, depends on what part you play in this role, people with disability, the families of people with disability and the community at large.

Amy Julia (44:47)
Yeah.

Matt (45:04)
Those are wildly different spaces.

Amy Julia (45:06)
Yep. And I do think that those postures are part of what ⁓ create the story of disability that we as families enter into or or not. I’m thinking of a woman who actually at Hope Hills Camp told me about attending a church for the first time with her children, both of whom have autism, and one of them had a meltdown as soon as they walked in the door.

And so this mom was on the floor with her daughter thinking, ⁓ my gosh, like what is happening right now? And we will never be coming back and I’m never gonna go to church again and et cetera. And a woman who was sitting at the welcome table, it’s a big church, came over and again, the mom who’s on the floor is being prepared to be kind of ushered out of the building. And the woman from the welcome table got down on the floor.

took her arm, looked her in the eye and said, we are so happy you’re here. How can I help? And she said, I mean, it just was this like the most beautiful experience. But what was also so interesting is that her child calmed down. There was some measure of like, I’m actually welcome here. The story here is that I belong. And I don’t mean there’s some like magic solution if we all just had better attitudes.

everyone would have all you know there would be no more self-injurious behavior or whatever but at the same time I do think that what you are describing just rings so true that if you come to my family with pity or an assumption of grief or those a are distancing me and b they don’t invite me into a way of seeing our lives as part of the goodness of

the whole world and yeah, the complex goodness that involves hardship and suffering for sure. But I don’t know, just, really appreciate the way you put that. we’re coming to the end of our time. I could talk to you for seven more hours, which we’ll do, I think at some point. But I wanted to land by just asking, and maybe this is reiterating what we’ve already said, but why does this matter? Why does it matter that we reimagine disability? What happens in the world if we begin to live

with a more expansive understanding of our humanity. What happens in our churches, in our families, in our communities? What do you see as a kind of hoped for reality if the vision of 99 Balloons to change the story of disability, if that were to come to be?

Matt (47:47)
Yeah, I just I firmly believe there’s one human story and it they all include Some sort of suffering. It’s not that it’s not to to watch out the particular stories of suffering with that ⁓ We need to learn to listen and set with one another ⁓

But there’s one human story and anything else and anything other than that is othering. And we live in a world that wants to separate itself from any sort of vulnerability. They want to distance themselves from that reality because we’re uncomfortable with that. And so in my greatest dream, in the work of 99 Balloons, ⁓

You know, we would be community building in such a way that both sides of the equation are welcome in just as they are in their humanity. It’s not, you know, when you come to this, when you come to night and balloon stuff, it’s hard to tell who’s many times who’s serving who. And that’s the, the beauty. That’s the beauty of a community that allows for all the experiences of humanity.

It’s, like the opposite of a fraternity, right? Like we don’t, we don’t all look alike. We don’t all think alike. We didn’t all vote alike. Like if you come, if you come to 99 balloons, man, you, you better be ready to engage in conversations on things you never cared about or really wanted to have a conversation about. And that, that is the beauty, you know, like, like imagine, just allow yourself to imagine that you might be prone.

Amy Julia (49:18)
Really?

Matt (49:37)
to seek your own happiness in places that make you sad. And you might be, you just might be walking away from some of the greatest, most beautiful possibilities that I believe God wants to put into your life.

Amy Julia (49:53)
Yes, I think for both of us, we’ve been invited into a story that has more beauty and wonder and misunderstanding, sometimes again, hardship than we ever imagined. ⁓ And I’m really, really glad to be a part of that. But ⁓ it can feel sometimes like ⁓ I’m speaking a different language than most of the people. ⁓

At this point, I’ve got so many people who know Penny and who know our family that in our little context doesn’t feel quite as foreign. then I do hear or see ways that disability is portrayed more broadly. ⁓ I think, my gosh, yeah, that’s so different than how I see it and how I experience it every day.

Matt (50:42)
Well, thank you for who you are and thank you for what you’re doing. Keep going. ⁓

Amy Julia (50:47)
Thank you

for being here with us and for sharing some of your story as well as just your thoughts on all of these things. I appreciate it.

Matt (50:55)
Thank you.

Amy Julia (51:01)
Thanks as always for listening to this episode of Reimagining the Good Life. I love hearing from you. Please do email me. It’s amyjuliabeckerwriter at gmail.com if you’ve got comments or suggestions. I’d love for you to share this episode with other people who might benefit from this conversation. I’ve also got more resources that have to do with disability, faith, family, and reimagining the good life on my website. So please head over to amyjuliabecker.com if you’d like to learn more.

If you aren’t already a subscriber, I would like to invite you to become one. In the next few episodes, I’m going to be talking with Emily McGowan about households of faith, with theologian Miroslav Volf about the cost of ambition, and with Down Syndrome advocate and Lucky Few co-founder Heather Avis about shifting the narrative around Down Syndrome and disability. Thank you, Jake Hansen, for editing the podcast. Thank you, Amber Beery, my social media coordinator, for doing everything else to make sure it happens.

And thank you, listener, for being here. I hope this conversation helps you to challenge assumptions, proclaim the belovedness of every human being, and envision a world of belonging where everyone matters. Let’s reimagine the good life together.