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Amy Julia (00:06)
Hi friends, I’m Amy Julia Becker and this is Take the Next Step, a podcast for families experiencing disability. We have 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 your whole family. Here at Take the Next Step, we see your family as a gift to our society and to your local community. Your family matters.
Your child matters. We need you among us. Today, I’m thrilled to introduce you to Heather Avis, if you don’t know her already. Heather is a New York Times bestselling author, a public speaker, podcaster, and a Down Syndrome advocate. She is the founder of and chief visionary officer at the Lucky Few, an advocacy organization dedicated to shouting worth, shifting narratives, and reimagining what it looks like when we create spaces of belonging.
She lives in Southern California with her husband, Josh, and their three kids, Mason, Trulie, and August, and their two golden doodles, Maybe and George Michael. So I have one more announcement before we dive into my conversation with Heather, which is that we are collecting questions for an upcoming question and response episode. I would love to hear what is on your mind. Just click the link in the show notes to record your question or send it by email, and we will respond to as many as we can.
And now, my conversation with Heather Avis.
Heather, I always love getting to talk with you. So thank you for being here with us today.
Heather (01:44)
Same, Amy Julia, thank you for having me.
Amy Julia (01:47)
So for anyone in our audience who’s not familiar with your work, you’ve worked for years as an advocate. And I love one thing that you say about yourself, that you shout the worth of people, specifically with Down syndrome. Although I do think so much of the work you do is very applicable outside of the Down syndrome community. You’ve got a podcast and an organization called the Lucky Few. But I also wanted to just dive in today with you as a mom of three kids, two of whom have Down syndrome. And I just wanted to ask if you could tell us about your family.
And then I wanted to ask specifically if you can tell us what delights you about your children.
Heather (02:21)
Yes, so I have three kids. My oldest is 17 and has Down syndrome. My middle is 14 and has no disabilities. And my youngest is 11 and has Down syndrome, a boy. So two girls and a boy. And all three of my kids came to me through adoption by way of infertility initially. And gosh, there’s so much there. So much to the story. My oldest daughter, I call her my
scariest and best yes, because when we pursued adoption, there was nothing in my plan that included disability. And we learned about her through a series of events. I, my yes to her was I couldn’t say no. And there was just this like gentle push towards her from the Lord to say yes to her. And so we said yes to her.
And it was very scary. She had Down syndrome, but she also had a lot of medical complexities. And we were told she might not live very long. I was 27 years old. ⁓ And it was my first time being a mother. And she just changed the game for me forever. So at that, yes, the trajectory of my life just completely changed. I say for the better, forever and for the better. ⁓ And then we adopted Truly, who has no disabilities. My husband and I are Caucasian. Macy is Caucasian. She’s Armenian. ⁓
by ethnicity and then my son is also Caucasian, middle daughter is African-American and Guatemalan. And so we brought her home and that’s a big journey. And then August joined our family as a newborn baby from the day he was born. We got to know his birth mom while he was in utero. She chose an adoption plan because of his downstream diagnosis. and then that just ⁓ really catapulted me into the disability space as an advocate because…
the world is not made for our kids with disability, for them to thrive and find belonging. And so I said, no way, I’m going to make this work for my kids or do my darnedest. And so I have had over the last 15 years for sure, I’d say even 20, just the absolute honor and privilege of getting to come alongside disabled people and be in the community as an advocate and an ally.
Amy Julia (04:40)
One of the things that we are kind of circling around here at Take the Next Step is the idea of delight ⁓ because so much of the disability narrative is around deficit and around even identifying milestones that have not yet been reached or ⁓ IEPs that are in well-intentioned setting goals to overcome as opposed to ⁓ really identifying these areas of ⁓
Yeah, just particular enjoyment and delight in our homes and in our families. And so I was wondering if you could just speak a little bit, because I think you do this both in your work, your books, and we’ll talk about that in a minute. But how do you delight in your kids? And did you have to learn how to do that in any way?
Heather (05:28)
gosh, I love this question. It makes me smile so big because I am not exaggerating when I say this every day, many moments in the day. I look at my kids with Down syndrome and I am so delighted in who they are. I’m delighted in my non-disabled daughter as well. But I’m so delighted in the fact that they have Down syndrome and that I get to know them and love them. It feels like just the privilege and honor of my life and something that I had avoided.
and a lot of people avoid. And so that’s why it feels so special. And I find so much light there. like, my gosh, I actually got in here. Like I got to step towards this and know it in such an intimate, sweet way. So ⁓ the organization that I run is called the Lucky Few. And the shortest answer is I had this narrative about Down syndrome or this framework around it, around disability that was real negative, ⁓ real based on deficit. And then when my daughter Macy injured our life, I just had
these moments of being in a space with a lot of other parents and babies at parks or different play groups. And she was the only one there with Down syndrome and feeling just so delighted by that, like tickled that, oh my gosh, I get to be her mom. Like no one else here gets to know her. I get to know her. And that framework really set us down this path of feeling very lucky to love a person and know a person with Down syndrome. And so something that I find so much delight in
with raising two kids with Down syndrome is how unbelievably different they are. ⁓ I mean, they could not be more different. Macy and August and Macy is ⁓ six years older than August. And for many years, we called them our bookends. Like we refer to them that way. And now they’re the same height and they get asked if they’re twins all the time. So now Josh and I started calling them the twins, which cracks me up. But they’re so, different. ⁓
Something about Macy that I find so much delight in is how uninhibited she is in a space. Macy has this incredible talent or skill or just natural ability to show up in a space unapologetically herself in a way that’s really refreshing. It’s not obnoxious. It’s not obtrusive. It’s like you see people like we were at Disneyland this week. We have annual passes. We live close by and she’s
delighting, she’s 17 and there’s a parade and she’s finding so much joy and delight watching the parade. And as soon as it’s done, she is on her feet doing her own parade and she’s dancing and she’s waving in a way that you see people watch her. like, I know there’s a lot of 17, like teenagers around here who in their hearts, they’re on that sidewalk dancing and you know, like delighting what happened. And she just does it. She just does that. And then she also has this really sweet way of
being uninhibited in her relationships with others. ⁓ And she just shows, she just sees you and loves you. Or if she’s irritated at you, then you know it, but it’s gonna be short-lived. There’s just, you don’t have to guess with her. And when it comes to relationship, there’s so much guessing in a lot of other ways because of her language. But I find so much delight in this, like, she’s just such a treasure in how she shows up in the world and in relationships with others.
which I love and then August. ⁓ I’ve never known another person to be such an empath. August like steps in a room and he can read what’s happening in that room on another level that I have. I just marvel at and I find a lot of delight in. ⁓ It’s pretty incredible how he can read a room and a situation and a person.
And then he, I’m just going to say he internalizes it, but he doesn’t, he’s real contemplative about it. Like he’s slow to make decisions and thinks things through in a really mysterious way that I marvel at.
Amy Julia (09:43)
Did you have to learn how to move? You mentioned just seeing disability originally as like a deficit and moving to a place. And again, not to say that all you ever do is delight in your children because I’m sure there are moments that are not delightful. did you have to move from like, was there anything that you learned or shifted in how you approached your kids or yeah.
I’m sure you could answer this for like the next two hours, but in a short way, like, is there anything that shifted in you or that other people might be able to like learn from your experience as far as moving from that place of deficit to a place of delight?
Heather (10:23)
⁓ I don’t know that there’s like a checklist for it. It definitely was, I made a decision and I encourage people to do this, to like lean into what is happening with my children with disability, with curiosity and learning. a foundation of, I don’t know everything. And ⁓ if I don’t know everything, then there’s a good chance I’ve been wrong about a lot of things. And I know, I know I’ve been wrong about a lot of things. So maybe I’m wrong about this.
⁓ And to really lean in towards, for me, was, when it’s your own child, there’s like this instinctual draw to them and this deep, deep love that ⁓ I think, unfortunately, a disability diagnosis and a downstream diagnosis specifically kind of makes it blurry or takes away from this joy and delight because of fear and scarcity. And so my encouragement to people is that
But you’re going to feel the feelings you’re going to feel, but really lean in towards that instinctual love. Yeah. And let that it sounds cheesy, but like let that guide you. Yeah. Right. Like take a step towards your kid. And instead of and maybe if there’s this conflicting feeling for me, it was like this conflicting narrative of Down syndrome, bad Down syndrome, bad. And then I’m like, I love this kid. I love this kid. You know, like, wait, what am I supposed to do with this information? And I leaned towards the love, you know, and in that
took me down slowly one step at a time of this undoing and this reframing that I had to do. I had to rebuild it. I had to take it all down, my understanding of disability, and rebuild it around what was true and real, which was my kit.
Amy Julia (12:07)
I love that and I do think that sometimes the social messages we get ⁓ cause us to even doubt the love that we have and the delight that we feel towards our children. so I, and even the idea of like having kind of like a rational or objective perspective on humanity. I’ve realized like, actually, like my perspective on my daughter and on many other humans is not objective or rational at all. It is relational.
It is based in love. And that’s actually what I want. And that that quote unquote bias or whatever we want to call it is actually how I think we should be biased towards one another as humans is to assume to be here, not to assume, to assume goodness, to assume love, to assume relationship, to be curious, ⁓ to lean into love instead of fear. So I think that’s really helpful. And I think it gets to my next question for you, which is.
even when we do have that instinctive and even habitual delight in our kids, the rest of the world does not always have that, especially for our children with disabilities. And so sometimes the rest of the world seems to see them as problems. And I think sometimes that can mean that we delight in our children, but not necessarily in our family life, because it looks really different from other families. It’s harder to figure out, you know,
sporting events or vacations, or you mentioned going to Disney World, or even obviously school is a big thing. And so I’m curious if you’ve felt that tension and whether you’ve learned anything about how to find a light in the life of your family and not just in your kids as these beautiful individuals that they are.
Heather (13:42)
Yeah, that’s such a good question. Like the feeling, the tension, anytime I step outside my front door, we’re like stepping into tension. And what I think for a long time in my life prior to having my kids with disability, there was this idea of like trying to fix things and make things work. And a lot of things we talk, we say in our family, like this is a tension to hold, not a problem to fix. And so when we step into
places that it is hard, right? It’s hard. It is hard to navigate and the world doesn’t make it work for our kids with disability. And even if like physically there’s things in place to help support, the mindset is so skewed and harmful around what it means to live with disability. ⁓ And we fight that every space we go, right? It’s at the grocery store, it’s at Disneyland, it’s at school, it’s at church, it’s every place we go, there’s that tension.
And it’s just something we hold. I think that it sounds, maybe it sounds simple or maybe it sounds obnoxious or I don’t know how it sounds, but instead of trying to fix it all just to exist within it ⁓ has also been a little bit of the gift for me. Like when I think back to the delight that my kids have given me, the delight seems like, and maybe it is, and you can lead me a different direction here, but it seems like
It’s all good and sweet, but it’s not. I think there’s a depth to it ⁓ that is actually really hard and complex. my kids with disability, because I’ve stepped towards them to get to know them and to love fully who they are and not to fix or change, ⁓ they’ve led me to this place of like real complex depth of understanding of being a human.
and understanding of existing in the world and understanding that we’re going to go into the world as a family and it’s going to be hard and hard is not always bad. Sometimes it’s just hard. And so here we are and let’s move forward, right? Like, let’s take a step in a direction that we all want to step as a family and know at the end of the day ⁓ that we as a little unit are
fully committed to seeing the full humanity in each other. And that’s gotta mean something, you know? Like, and standing firm in that and not letting the outside narratives make me question if my kid with Down syndrome is fully human or not. Like if she’s, if she, he, if they are good or not. Like those answers I know because I’m standing firm in that, delighting in that truth, right? The depth and the complexity of that truth. ⁓ And so then those tense moments, all that tension, we’re just gonna
exist in it. Does all that make sense or does that seem like woo woo?
Amy Julia (16:45)
No, I mean, I agree. And I think one of the things you and I have talked about before is just longing for other people to have the experience of our children and the assumptions, not just with our children, but of kids with disabilities in general of, yeah, assuming that full humanity and assuming that it is delightful that they are among us, right? that they are, I think one of the things I want listeners of this podcast to hear over and over and over again,
is your family matters. It’s not to care for families affected by disability is not simply a matter of charity or even justice on our society side, even though I think there is both like charity and justice that, yeah, sure, good things. But actually, like we need you. You need to be among us ⁓ as a society because of the gift that your family is. And I just want to underscore that even
in a world where that often, it doesn’t often feel that way.
Heather (17:46)
Yeah. Can I say something to that too, just to add to it? I know as an advocate for me choosing that ⁓ as a career even, right? It’s something I’ve really chosen to be very intentional in my actions of advocacy. And I know, and I’ve talked to parents before and families before that feel overwhelmed by this idea of like, well, now I have to advocate. And my encouragement to families is when you as a family step out into the world,
Your existence is your advocacy. Like you are stepping into a space and you’re saying, we are going to be in this space just as we are. And my kid with disability or me with disability, I’m going to look different, act different. I might cause a little bit of a ruckus. I might be a little bit of a distraction to the table next to us. But you know what? We’re by choosing to step out our front door, by choosing to step into this place and just exist in a world that has been totally resistant to the existence of people with disability.
That is advocacy. You just get to live your life fully. people are watching, for better or worse, some days, right? Depending on the circumstance. But really for better. Because we get to step in the world and say, no, we actually get to exist in this space. our person, our loved one, our child with disability gets to be exactly who they are. We’re not changing them for you. This is who they are. Here we are. You’re welcome. know, like not with an arrogance, but.
We know we’ve been changed. We’ve been transformed. So just be who you are. And that’s your advocacy.
Amy Julia (19:20)
⁓ I really love that, that your existence is your advocacy. I think that’s like a huge takeaway ⁓ from just this conversation. I wanna also just mention your most recent children’s book, ⁓ but you’ve written a number, but most recently wrote one called, I Like You So Much. And it really does extend this idea of shouting worth and delighting in one another. And you’re extending that beyond your own family to all sorts of ⁓ individuals and ⁓ types of people.
And it makes me think about just what can happen in relationships and in society when we begin with kind of an assumption that we can delight in one another, right? With what we’ve been talking about here. And I wanted to ask you to speak to that. Like, what can happen when we have this lens of delight instead of deficit? What can happen in our relationships and potentially even just like a ripple effect beyond our immediate families?
Heather (20:14)
Yeah. ⁓ Gosh, that’s a really good, deep question. I know what’s happened for me, and this might just start to get repetitive a little bit. But again, is this like depth of understanding of the goodness of a human life that that I for me, I can see.
Like from starting from a place of goodness, it just creates bridges instead of walls. know, like there’s a sense of an understanding of other humans that we’ve got a lot in common. Like at our core, we are very, very similar in what we desire and what we need in this world. And all of those bridges and all of that understanding I think are gonna create
more goodness and more peace ⁓ in our own personal lives, but in our community as well. And we don’t all, we’re not all going to agree on things. Like there are people in my life that I disagree with big, big things about, you know? ⁓ And that’s life. not all going to agree on things, but if we can start from that point of like seeing the goodness in another person, I think it creates a lot of peace in our own lives.
and builds bridges towards one another that I would hope can make this world a little bit better.
Amy Julia (21:48)
I know for me that ⁓ when I am in a public space and I see another family who has a kid ⁓ with Down syndrome, also because, you know, Down syndrome is usually rather visible, but also just another child who ⁓ is experiencing disability in some way, there is a sense of welcome to me in that space, even if I’m not there with Penny. That’s almost, I mean, they don’t even know what it is that I’m thinking and…
I’m sure sometimes there are people who think, gosh, is it okay that we’re here? Are we being welcomed here? But ⁓ I often remember that, that like what you were saying just about ⁓ our family being out in public can sometimes, maybe people don’t want us there and I’m not gonna apologize for being there. But other times it actually can be this source of welcome. You’ve talked before about shoulders down spaces of just being able, as you said, to like.
have a sense of just like peace and being able to kind of like exhale in a space. And I think sometimes our families that, ⁓ you know, don’t look like they necessarily have it all together all the time can actually bring some, yeah, some real peace and goodness into spaces that might otherwise feel ⁓ kind of scary to show up within.
Heather (23:03)
Yeah, I think like a sense of being known and understood even though we’re not talking to you, like even though I’m not, hey, what you like the way you’re living or I don’t have to really know anything about you, but I can see you out in the world and be like, they don’t have it all together. Phew, neither do I. Like, and I’ve been trying to fake it this whole time. Yeah. You know?
Amy Julia (23:20)
I have one final question for you, which is thinking about like a young parent who’s in the midst of perhaps an unexpected diagnosis or just still wrestling in that tension, whether that’s the tension of the public life versus what we experience in our family or the tension of what you described of like, I have a kid with a disability. I don’t know how I feel about this. I love this kid. know, how is there anything you can encourage our listeners to do to lean into love?
⁓ to kind of lean into the delight and the love instead of the fear and anxiety of it all.
Heather (23:56)
Hmm. The first thing that came to mind, and I hope it’s helpful and doesn’t feel burdensome, is we don’t have to ask permission for our kids to exist. And we don’t have to ask forgiveness for who they are. And I remember when my kids were real young, especially, there was this pressure that just came from a narrative that wasn’t helpful or necessarily true, that it was like, oh, is it OK that we’re here? Oh, is it OK that we’re here? Oh, I’m so sorry.
if fill in the blank. And I encourage parents to like, to just even if you have to fake it a little bit, you know, until you get there, to just know, just say, Heather told me that I don’t have to ask permission for my kid to be in the world. And if we’re going to go to fill in the blank, I don’t have ask permission to be there. I get to be there. And my kid gets to be a part of this because they are a human in this world and they’re a citizen of this world. So they get to participate in that.
⁓ So I hope that a new parent can take that and feel empowered and maybe even a little bit of relief and not pressure. I don’t say it with any kind of pressure, but you just get to take your kid into the world and be a part of it just like however you’re able to within your capacities.
Amy Julia (25:13)
I think that is beautiful. And truly, I ⁓ wish that someone had been able to say that to me when when I was really little. So I will receive that on behalf of some other young moms, because we’ve certainly walked in those shoes and we hope that there are some who are listening today and who might be encouraged to show up as they are, knowing that that actually is a tremendous gift to those who will receive it. So thank you so much for all of that and for the work that you do and for being here with us today.
Heather (25:43)
Thank you.
Amy Julia (25:48)
Thanks so much for joining me here at Take the Next Step. This show is produced in partnership with our friends at Hope Heals. Hope Heals is a nonprofit that creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inter-ability communities. I do want to mention that if you are a listener who wants to continue thinking deeply about disability and culture,
I have a conversation on my other podcast this week that I think you would enjoy. My other podcast is called Reimagining the Good Life, and I’m talking with theologian John Swinton. He’s a disability theologian who does really thoughtful work in areas related to this show. you can just find a link to that podcast in the show notes and join me over there if you’re interested.
Again, we are gathering your questions for an upcoming question and response episode. So click the link in the show notes. You can record a question or send it by email. I really would love to hear from you. And we have more great conversations in store. So stick around. Next week, I will be talking with Matt Mooney, the co-founder of 99 Balloons. He’s going to help me answer some of your questions. ⁓ And then after that, we’re also going to have conversations with Jordan Arigetti, who is the founder of an organization called Support Now that I’d love to introduce you to.
Carrie Hahn, who’s the author of Beyond Inclusion, ⁓ and other wonderful people up ahead. If you are new here, please follow this show. If you’ve been around for a while, or if you’re new, it would be great for you to rate or review it. We would love to continue to spread the word about this resource for other families who have been affected by disability and want practical, manageable, measurable, meaningful ways to take the next step towards a good future.
As always, you can send questions or suggestions my way. There’s a little link at the end of the show notes that says ⁓ send us a text. You also could email me at amyjuliabeckerwriter at gmail.com. I want to thank Jake Hansen for editing this podcast and Amber Beery, my assistant, for doing everything else to make sure it happens. And I hope that you leave this time with encouragement to start with delight, connect to community, and take the next small step.
for a good future for your family.
