Disability: Tragedy, Inspiration… or Something Else? with Matthew Mooney

E15 — Tired of feeling like you have to “fix” your child—or turn their life into an inspiration story? Parents of kids with disabilities are often pushed toward two extremes: tragedy or triumph. But what if both miss the point? In this conversation, Amy Julia Becker and Matthew Mooney (co-founder of 99 Balloons) offer a healthier way to understand disability—rooted in shared humanity, vulnerability, and real relationships.

Plus: simple language shifts you can use at home and with friends starting today.

Ask Me Anything: Record (or email) your question for our upcoming Ask Me Anything episode: amyjuliabecker.com/qr/

00:00 Intro: Understanding Disability
04:52 The Four Myths of Disability
08:01 Theology and Disability
11:21 The Importance of Relationships in Disability
14:39 Defining Disability: A Shared Human Experience
21:18 Practical Language Shifts in Discussing Disability
25:36 Navigating Challenges and Celebrating Joys

MENTIONED IN THIS EPISODE:

• Websites: 99 Balloons
• Exploring disability as tragedy on Amy Julia’s Reimagining the Good Life podcast: RFK Jr., Autism, and the Story We Need Instead

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WATCH this conversation on YouTube: Amy Julia Becker on YouTube

SUBSCRIBE to Amy Julia's Substack: amyjuliabecker.substack.com

JOIN the conversation on Instagram: @amyjuliabecker

LISTEN to more episodes: amyjuliabecker.com/shows/

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ABOUT OUR GUEST:

When Matthew Mooney 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. 

Matt 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 received his PhD 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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Take the Next Step is produced in collaboration with Hope Heals. Hope Heals creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com. Follow on Instagram @hopeheals.

Transcript

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

Amy Julia Becker (00:06)
I'm Amy Julia Becker and this is Take the Next Step, a podcast for families experiencing disability. We've teamed up with our friends at Hope Heals to bring you weekly conversations with fellow parents, therapists, and disability advocates about practical ways to cultivate a thriving future for the whole family. Here at Take the Next Step, we see your family as a gift to our society and to your local community. Your family matters.

Your child matters. We need you among us. So parents of kids with disabilities are often pushed towards two extremes, towards tragedy or triumph, like feeling like we have to fix our children or turn their lives into, and our whole lives, our family lives into an inspiration story. I think both of these extremes miss the point. And today I'm talking with our friend, Matt Mooney, father, writer, attorney.

Disability Advocate and co-founder of 99 Balloons, which is a nonprofit supporting people with disabilities and their families around the world. We're talking today about a healthier way to understand disability. We're talking about disability as something that is rooted in shared humanity, vulnerability, and real relationships. You might already be able to tell that this conversation is a little more theoretical than most of my conversations here on Take the Next Step. So get ready for that. On a practical note,

Matt and I will also talk about some simple language shifts that you can use when talking about disability at home and with friends. So here's my conversation with Matt Mooney.

Well, Matt, thank you for joining us again today on Take the Next Step. ⁓ Some people have heard you talk with me here before, but in case there are listeners who have not been introduced to you, could you just give a brief introduction to who you are and to your family and, know, kind of why I might have you on the Take the Next Step podcast?

Matthew Mooney (02:06)
Sure, thank you for having me. Well first, I don't believe in disability experts, so none of this is to set me up as though I'm that, because I don't believe in that. But I do have a wife, and my wife and I is first child, my wife is Jenny. We had a son named Elliot, and we found out at 30 weeks pregnant that Elliot had trisomy 18. And Elliot lived for 99 days, and...

And we celebrated a birthday for his life every day, because we couldn't take for granted any day with him. And so it was hard and wonderful, both and. ⁓ And from Elliott's life, we started an organization called 99 Balloons. And now, if you fast forward, that's been an 18-year journey of helping primarily churches build relationships with people with disability in their community, primarily through programs called Recess and Befriend. ⁓

And so through also through 99 Balloons, we got to know a beautiful girl named Lena, who we adopted as our daughter. So I am a father of a, daughter with profound autism, cerebral palsy, and the list keeps going. She's wonderful and loves music and lights and dancing. Um, so through 99 Balloons being immersed into a community of folks with disabilities, um, I'm a father of a beautiful girl with disabilities.

I recently finished my PhD, got to study with Brian Brock at Aberdeen ⁓ on the church and disability.

Amy Julia Becker (03:39)
Well, and you have two additional children. do. So there's ⁓ there's much to your life and to your story. And we're really glad to have you here as a dad, as a scholar, as a leader in this space. We won't call you an expert, but I would say that you've done a lot of you've had a lot of different hats. And that's really helpful, especially because what I want to talk about today is kind of a basic question. But it's a question that's taken me a long time to answer. Perhaps I'm still answering it, which is just like, what is disability?

Matthew Mooney (03:42)
Have you about

Amy Julia Becker (04:08)
And I thought maybe we could start by asking the question, how do some people understand disability, even if we wouldn't say, here's what disability is? Like, how do we understand?

Matthew Mooney (04:18)
Amy Julia, not only are we talking heads here today, but we are friends and I'm going to propose that we flip the script a little bit and I'm going to ask you to answer your questions. you think about this? This will a little different. So usually you're interviewing people. We've done this now a few times and I always feel like I want to hear what you have to say. So today we get to hear from both of us. If you'll humor me.

and answer your own question and then I get to respond which is fun and easy.

Amy Julia Becker (04:48)
I know it's kind of easier to be the responder, isn't it? So, ⁓ but I will do this. So, you know, when I look out over kind of the images and the messages that I receive on a regular basis, whether that is through the news or through children's books or through movies or ⁓ advertisements, I think we see some pretty common messages about disability that I have come to believe are false messages.

At the very least, they are false in the sense of not being too small, like not encompassing enough of the truth to be helpful. And sometimes I think they're like outright wrong. And those are what I've taken to calling the four myths of disability when I've done like teaching on this. The first is that disability is a problem to be fixed. You know, there's a kind of physical or intellectual or emotional problem, and we need some sort of medical or behavioral intervention to fix that problem. And ⁓ again, that

can be, I guess, helpful in the sense that sometimes disability does bring with it some concerns that need to be addressed. so, great, if we can help with that, fantastic. But I think that also can lead to this understanding of people with disabilities being problems, the concept of disability being a problem. And that has not in any way been my experience ⁓ as I've gotten to know our own daughter as well as the disability community.

I that also bleeds into a second myth, which is that disability is a tragedy. And this becomes, I think, even like more dangerous because we see language that assumes life with disability is tragic. We've heard that. In fact, you and I have had a conversation about that before in public. We'll link to that in the show notes. ⁓ And so families can experience themselves as though their lives are tragedies. And we also see that in terms of just some real ⁓

whether it's decisions about prenatal testing and abortion or about euthanasia where there's actual lives being devalued because of that message. And then I also think disability, and this is probably even more common, it can be used as like an insult or a joke. months we've had a big uptick in the use of the R word, which is a way of just kind of dehumanizing and devaluing people and making...

real human lives into a joke or an insult. And then the final thing that I see in our culture around disability is disability as an inspiration, which is the most tempting way, I will say, for me as a mom to falsely understand disability is that this is kind of a lesson for me to learn from. This is an experience that, again, I can ⁓ get some sort of personal meaning and inspiration from rather than ⁓

a real full human life that someone else is experiencing. And sure, I can learn from that. But if I kind of reduce it to inspirational material for my sake, then I think I've really missed the point. So those four myths, a problem, a tragedy, an insult and an inspiration. ⁓ Those are just some of the ways that I have kind of categorized disability in our culture. How about you?

Matthew Mooney (08:00)
Well, first of all, I'm brilliant for letting you answer because those are four wonderful things. I'm glad that we got to hear those things and I see and experience those all the time and don't quite know what to do with it. ⁓ You know, as I thought about this question, what are the ways that people understand disability? I'm kind of thinking through that theological lens and I'll say this just about Christians. They believe that if they know the right things,

If they hold the tenets of faith in the proper order about disability, then they will act the right way towards those with disability. And this is a lie that I often tend to poke at every chance that I get. Scripture says that they, the world, will know that we are Christians by our love. This idea that knowledge

proceeds from the act of love, not that proper action or love proceeds from believing the right things. I'm not devaluing what we believe. What we believe is super important. What we believe about people, about being human, about God. These are super important things. But scripture does not say that they will know we are Christians because we hold the right beliefs. In the church, when we talk about disability, the conversation almost

always comes back to what we believe about disability. I, my, my entire work of my life and I'll, I'll die on this hill is trying to steer the church toward the conversation of relationship with people with disability. The quick and easy truth, the way that I get to help people understand this.

it's not quick and easy, but is I say I can tell more about what you believe about disability in 30 seconds of hanging out with Lena and interacting with her than I can have three hours of you telling me what you believe about disability, right? That there's, don't care what you say you think or what you know you should think, I care about how you act and what you do and how you treat.

as Christians, we're hesitant to admit that we're afraid or we're hesitant to admit that it makes us feel awkward or hesitant to admit that we're scared to death because we know that we shouldn't be. And we know that if we believe the right things, we shouldn't be that way. I believe that most Christians in most church theology, they would never say this outright. This would never be written down in their creeds. But really, when you dig underneath it,

that most of them, what they really believe is that disability is a tragic effect of the fall. That is where it would boil down to, and it's back to tragedy, right? ⁓ it's this idea that disability is big, capital B bad. And I just don't think that's the whole story. There are certainly terrible, difficult, hard realities that I experience and live with because of disability. Those are real.

Yeah. That is also true of my relationship with my typical kids. That is also true of my relationship and my marriage and my wife. So most things in life come with this experience also with it of, hardship, of things that are difficult. And so I'm just trying to get us to get into that immersion equation of relationship with this, with people with disability and reminding us that, that

the hard tragedy piece of it, just not the whole story, both in scripture and in life.

Amy Julia Becker (11:37)
So what do you think happens when we make that shift instead of kind of ⁓ trying to get it right in how we think, ⁓ just diving into relationship? Like what does that happen? What happens in assuming that we're talking about ourselves, like, you know, as typical as one might call themselves, you know, typically developing people, entering into relationships with disabled people. What happens in both kind of on both sides, so to speak, of the equation?

Matthew Mooney (12:07)
I think the easiest thing to pick on, I think many things happen. I think the easiest thing to pick on is ⁓ just the pity that flows from that. If disability is big B bad, if disability is a tragic effect from the fall, how do we as the church show the world a picture of celebrating the Imago day and something we're declaring big B bad? It doesn't fit. It doesn't work.

And therefore, I believe the voice of the church is just muted in a conversation that it should be leading. What do you think?

Amy Julia Becker (12:44)
Well, you know, it's so funny. I'm thinking about Penny, our daughter with Down syndrome, who is now, you know, a young adult, ⁓ had some friends over, all of whom have intellectual disabilities of different types. And one of the things that just struck me about their time together, and this is a group of kids who you might from the outside looking in view in the ways that you just described, you know, this is a sad situation for these individuals. might.

think that there is something to be pitied here. And I sat in my little office and they were in the other room and all I heard was laughter. I mean, over and over and over again. And it was so delightful. And I asked her afterwards about one friend in particular. I was like, has she ever not been happy in your relationship with her because they know each other through school? And she's like, no, not that I can think of. But I later just said to Penny, was like, Penn, do you ever get frustrated? She was trying to do something and she wasn't able to do it. And she was like,

really. I'm like, please tell me you can think of one time. And again, I don't want to like glorify my daughter or her friends. They have hardships. They have real things that get them mad. You know, but there also was just this sense of this is not a life to be pitied. Like this is like these are such lives to delight in. And I'm doing that just from sitting in the other room. So I guess I just want to affirm what you're saying about the relational. ⁓

the significance of relationships in understanding disability and in really being like, it's actually like we can give every definition in the world. And if that doesn't come hand in hand with the relationship, it is meaningless, even if it's quote unquote accurate according to some other measure. So yeah, I just want to affirm, I love that you took us there and I really appreciate it. And I guess though, then we should go to like, if you had to give a definition of disability, what would you say?

Matthew Mooney (14:39)
Well, let's do what I'm trying to do on this. Let's hear what you have to say. What do you have? I feel like you got a working definition of disability.

Amy Julia Becker (14:48)
I have a working definition, but I'd like to hear what you think about it. ⁓ Okay, okay. So, I have been saying for a while that that disability is a natural aspect of the human condition. And what I mean by that is that, first of all, most of us will experience disability, whether that is temporary or permanent, at some point in our lives, ⁓ in a physical and or emotional and or intellectual way. And so, it really is quite natural that

we as human beings in these bodies and minds experience what we would call disabling conditions anyway. And I think what that often means is that we confront physical, emotional, or intellectual limitations. ⁓ And for someone like Penny, who was born with ⁓ probably a kind of better understanding of those limitations, I don't think that confrontation has been quite as challenging as it is for me ⁓ as someone who had.

different limits when I was born. ⁓ And certainly for people who experience disability as a result of an accident or ⁓ as a result of aging, I think that sense of increasing limitations can be really, really challenging and can feel really, really bad. But I'm not sure that it is bad, although I do think we sometimes experience it that way. So my shorthand is disabilities, a natural aspect of the human condition. I don't want to therefore say we're just all the same.

And your experience of using the wheelchair is the same as mine of wearing glasses or something like that. But I also want to say there's a line that connects those two experiences that I don't want to sever. So, yeah, how about you? What do you think?

Matthew Mooney (16:29)
Well, this is why I love talking to you, because I think you and I, we're striking the same notes, I don't know what song I'm putting together. And so often for me, you're so tactful and wonderfully spoken, and I'm just a lot of energy coming at you pretty quickly. But ⁓ I agree, the bullets in what you're saying is just so important. I get to teach a class. ⁓

a university level class about disability. And I start with ⁓ this exact question on purpose. I say, what is disability? And then every single one they get in groups of four and every single one of their definitions, I can pick apart and pick on. Cause I've thought enough about this and it's really not that hard. It's really hard to come up with a sufficient answer that's airtight because you're not going to do it. So when I was thinking about this, know, here, here's what I have come to think.

That disability as a word and a term is really, really not all that helpful. It's just, it's just really not a word that there's a through line in the experiences of those that, that we're, putting under that umbrella. So I think you would just have to start at this place of like, it's real wonky. So, so here's what I came up with. ⁓

Again, these are more on the negative side, shockingly for me. ⁓ But I said, a too broad descriptor encompassing too many life experiences to actually be helpful by actually pointing at anything. ⁓ I said, a socially engineered category often willed to cordon off a segment of humanity as other. And when instead, whatever, I think whatever disability is,

It is certainly, and this is where you have to be careful of what you're not saying, but it is certainly part of our shared humanity and it is anything but other. ⁓ Certainly we have in all experiences of disability are equal in the same. and, but there is a common, there's a shared humanity ⁓ among people with and without disability. And that categorization is very blurry.

and changes by the minute, ⁓ by the second, in a way which if we are all gifted to have a long life, we will all become disabled. So it is a part of the human experience. And so, so often I think it's just, we don't want to face what, what disability is reflecting back to us. Oftentimes we're trying to ignore those things that you mentioned earlier, limitations, vulnerability.

pain and suffering, whether the person with disabilities actually suffering pain or not, I put it onto their experience when I see them. And I can't stop people from doing that. So I just think for me, these Genesis realities of being human.

come to us, as we come into experience of a person with disability, all these things are coming at us, which we pretty much spend our Instagram time and our whole lives trying not to be reminded of, right? We want to be reminded of hacks to optimize and be our best. You know, I'm 48, so I get more, you know, if I'll just eat more protein and then, and I'll take this pill, I'll be amazing.

We love that. You know, what we don't love is to be reminded that everybody that we love their life is going to come to an end. We don't like to be reminded of that. We don't like to be reminded of the reality of our situation as humans. And I think the greatest prophetic voice that my friends with disability ⁓ have back into my life is that I'm vulnerable. ⁓

that I'm not in control, that I have limitations, and that the good life includes pain and suffering. It doesn't just navigate away from it.

Amy Julia Becker (20:49)
Well, and so now let me turn the corner to like some, you know, life hacks. And I don't mean it that way, but I do want thinking about parents who are listening to us having a kind of heady conversation about disability. Yes. And yet who also might be saying, ⁓ shoot. I mean, if any parents are like me, they'll say, I find myself in some of what you're calling false messages. Right. Like, you know, these situations where those of us who are not potentially potentially right now experiencing disability to other

the person, even if it's our own child. So if we want to bring a truer understanding of disability into our own families, into a world that does not necessarily understand us, I'd love to leave with just us sharing a few ideas of how to go about doing that. ⁓ You've already spoken to relationship as a key component to doing that. I'll add one and then you can see if there's anything more you wanna add. I found that examining language in our family, how do we talk about disability?

⁓ We try not to use language of strength and weakness, but of challenge or of limitation and of possibilities of giftedness. That has helped when we're talking about ourselves and our kids just to again kind of say, yeah, all of us have challenges and limits. All of us have gifts to offer. How can we see that and support that in each other?

rather than ⁓ thinking about just in terms of like strength and weakness. So that's one kind of language shift we've made. Are there other things you can think of that might help kind of, ⁓ yeah, experiencing disability differently within our families?

Matthew Mooney (22:25)
Yeah, along that vein, think this fits, but ⁓ I mean, these are hard, right? These are the hard things come out of the clouds of philosophy and theology and what do we do? These are the hard questions. you know, so we have three teenagers and like we, one thing that we've tried to cultivate within our family is ⁓ an ability to talk about the hard

Because what's often intuited by siblings and by family members is like, well, we don't talk about it. And that tends to cause a lot of frustration, a lot of problems in the long run from research and reading. And in real life that I do is, know, so if we go in, you know, if we go to a restaurant, we are an absolute parade, right? Like, I mean, you know, we're there. Lena might scream at the top of her lungs. She might bang the table. She might.

grab somebody on the way in and with, sorry, she likes her shirt because she's really into plaid. You know, this is our reality of going to, you know, lunch, ⁓ which we love and accept and get out of our way. But ⁓ like we try to go back with our kiddos and say like, man, was that that could kind of be embarrassing or like when that happened, that was tough or that was hard or how do you feel about that? Yeah, we just try to in a a loving, kind, dignifying way.

Talk about it in reality and not make it something that we can't talk about. Yeah. And not make it something of some experience that can never be shared together. ⁓ It was hard. It was difficult. People did look at us, you know, I mean, that didn't feel great. know, particularly teenagers, turns out they don't love that.

Amy Julia Becker (24:12)
Totally. I don't love it either. And I'm also 48. So yeah, I agree. I think that kind of normalizing the not just what just normalizing the conversation around both what's good and what's hard is has been really important in our family as well. And I also think the other thing that's been helpful to me has been when I start to think that disability equals suffering.

to try to ask some questions about that ⁓ of myself or of someone else, but just like, is the suffering coming from the disability or is it coming from the people around us? Or is it coming from my own perceptions? I mean, even the description of being embarrassed in a restaurant. Well, did someone actually, you know, get mad and lash out at Lena or did we all just think maybe that's going to happen and that's scary and which is a real feeling and gets to be talked about. And yet at the same time,

Was there really suffering and hardship here or are we navigating ⁓ our own ways of being in the world? ⁓ Which again, I don't want to minimize the especially for teenagers, very real experience of embarrassment. But I also want to be really clear that like, ⁓ you know, being I mean, again, just to think about the laughter of the kids in the room next door to me, there was not any suffering, at least when I was listening to them in the room next door.

Matthew Mooney (25:36)
Absolutely, I think just like all experiences of disability and the stories that flow from that, from those experiences, they're valid. And that's where it's like not a super helpful descriptor because there are people with disability whose lives are, they are much happier than mine on like any scale that you could make, you know, and we talked about that. And there are people with disability whose lives are tremendously more dark and hard and difficult than mine. it, you know.

That's why disability is not one or the other. It is not a one lane thing. It is a huge group of people experiencing massively different things. we can't, I see people sometimes in the church world, you can camp out in the positivity camp and you never can talk about difficulty things. And sometimes I'm in worlds where it's

gloom and doom and it's terrible and the vibes are like, well, this is, this is tragic. And it's like, well, neither one of those camps are actually living the full experience of disability. And I, I think just it's, it's not a one way lane of one experience. It's just, it.

Amy Julia Becker (26:56)
I agree. ⁓ And I know that we need to come to a close with, you know, without answering all the questions and without tying anything up in neat bows and yet also hopefully giving the people who are listening some sense of freedom to experience their families and their lives as actually one piece of this messy, vulnerable, beautiful ⁓ life that we all share as humans. Some of us with a

know, descriptor of disability on us for some part of that experience in this world.

Thanks so much for joining me here at Take the Next Step. This show is produced in partnership with our friends at Hope Heals, a nonprofit that creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inter-ability communities.

We are gathering your questions for an upcoming Ask Me Anything episode. I would love to hear your questions. So please click the link in the show notes and you can record a question or send a question by email and it would be wonderful to hear what's on your mind. We also have some really great conversations in store for you in the next few weeks. I'll be talking with Julie Henderson about caregiving and especially for those of you who are both a parent and a caregiver. What are those roles?

How can we make sure we're taking care of ourselves even as we are taking care of our families? And in upcoming episodes, I'll also be talking about finding belonging within faith communities, talking about behavior as a means of communication, and finding hope and joy in the midst of disability. As you go from here today, I would love to ask you to follow this show, to rate it, review it, let people know that this is out there, share it with others.

Questions or suggestions my way, I'm always open to those. Just tap the send us a text link at the end of the show notes or email me at amyjuliabeckerwriter at gmail.com. I will really conclude today by thanking Jake Hanson for editing this podcast and Amber Beery, my assistant for doing everything else to make sure it happens. And I hope you leave this time with encouragement to start with delight, connect to community and take the next small step.

toward a good future for your family.