• I Like You So Much by Heather Avis
• More of Heather’s books
• The Lucky Few podcast
• Small Talk by Amy Julia Becker
• Heather’s Substack
• Reimagining the Good Life Workshop
• Subscribe to Amy Julia’s Substack newsletter

WATCH this conversation on YouTube by clicking here.

ABOUT:

Heather Avis is a New York Times bestselling author, 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 three kids, Macyn, Truly, and August and two Goldendoodles, Maeby and George Michael.

Website: https://www.heatheravis.com/

Instagram: https://www.instagram.com/theluckyfewofficial/

Facebook: https://www.facebook.com/TheLuckyFewOfficial/

YouTube: https://www.youtube.com/channel/UC99_OFh29y9lVqZyHY2Xztw

Podcast: https://podcasts.apple.com/us/podcast/the-lucky-few/id1349646917

New Book, I Like You So Much: https://www.amazon.com/Like-You-So-Much-Celebrating/dp/0310166594/

Photo Credit: © Camilynne Photography

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

Amy Julia (00:04)
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’s episode is the final episode of this season of Reimagining the Good Life and I cannot think of a better guest to end this season with than Heather Avis. Heather is a New York Times bestselling author of multiple books, both for adults and for children.

She is the founder and chief visionary officer at the Lucky Few, which is an advocacy organization dedicated to shouting worth, shifting narratives and reimagining what it looks like when we create spaces of belonging. You might be able to tell just from that description that Heather and I have a lot that we love to talk about and a lot in common. She lives in Southern California with her husband, Josh, and her three kids, Mason, Trulie and.

August, you’ll get to hear a little bit about them today. And Heather is also one of the people who I look to regularly. I’m a subscriber to her sub stack. I listen to her conversations with her fellow co hosts and guests on the lucky few, which is a podcast as well that I highly recommend. I look to Heather to help me think through questions around inclusion, justice and belonging. And that’s all certainly

as it pertains to people with disabilities, but honestly what I really appreciate about Heather is also just thinking about what it means to be human and to be intrinsically beloved and what that actually looks like within our everyday lives and not just in abstract terms. As I said at the top, this is the final episode of the season and I would love to stay in touch. So I want to invite you to subscribe to my email list.

When you do that, which you can do through the link in the show notes, you will be the first to know both about when this podcast starts up again, but also about other exciting new projects that are coming next fall. I will be thrilled to tell you about that. So for now, have a wonderful summer. And here is my interview with Heather Avis.

Heather, it is so great to be here with you today.

Heather (02:16)
Amy Julia, it is my pleasure.

Amy Julia (02:18)
So you are the founder and the chief visionary officer I love that title of the lucky few and we’re gonna talk about what that means in a Minute, but I want to read some of this list of things on your bio You’re an advocate for people with disabilities You’re a writer your mom of three kids including two who have Down syndrome And you have a new children’s book that just came out called. I like you so much So we have a lot to talk about today

But I thought that we would start by asking for people who don’t know your story, if you could just tell us about your family, because at least in my understanding of your life, your family has informed a lot of the other things that show up on your bio and resume.

Heather (02:58)
Yes, absolutely. I actually was a special education teacher before I became a parent. And I can remember from a young age having like a real interest in the disability community and then kind of wedging my way in there through as a young person through like volunteer opportunities and ⁓ just growing to love the population so much. And then…

My husband and I were unable to have children naturally. And the shortest version is we ended up adopting a little girl with Down syndrome with no desire to want a child with Down syndrome. And it’s a super long story, but we couldn’t say no to her. I call her my scariest and best yes. And my yes to her was I couldn’t say no. So it wasn’t this like resounding like, we want a child with Down syndrome. It was more, ⁓ gosh, I can’t say no to this.

Yeah. And so we said yes to her and she changed my life forever and for the better. And I remember when she was real little, ⁓ actually right when she came home, because in an adoption process, it’s often the story, not always, of like a hurry up and wait. And you’re waiting so long for to be placed with the child or to be matched with the child. And then you get the phone call and it’s like, OK, tomorrow or next week or, you know, it’s so fast.

And so ours was a three week period from saying yes to her coming home and she had a lot of medical issues. So there was doctor’s appointments and some logistics that had to be figured out medically before she could come home. And so in all that time, in our hesitation of saying yes to her, even as someone in who I would have considered myself years ago, a disability advocate, as a special education teacher, there was always this narrative being quite loudly shouted.

not even like a small whisper of, do not want a child with a disability. Like you do not want this child with Down syndrome. People when we said, share the news that we were going to adopt her, it was always this like, ⁓ okay. Not like a, yay, congratulations, you’re getting a baby, right? And that we often hear in the Down syndrome community, that story of like saying, I’m sorry, before saying congratulations, when you learn about somebody’s child having a diagnosis.

So was all this negativity in my ear about having this baby with Down syndrome. And I remember bringing her home the day she came home and sitting in the little nursery and she’s fallen asleep on my chest and she has this itty bitty like nine pound three month old. And I just held her in my arms and looked at her face and thought, huh, what was I so afraid of? Like, what was everyone talking about? There’s this baby, oh my gosh, like this beautiful human being who’s my daughter. What was I so afraid of?

As the weeks and the months unfolded and maybe it was the first years especially, the feeling that I had felt overwhelmed with was how lucky I was to be her mom and finding myself at the park and at play dates and in the grocery store and everywhere I went, she was the only person with Down syndrome there most often. the one in 700 babies born with Down syndrome. So it fit most places we were. And I just would have this feeling of looking around and thinking, you guys have no idea how lucky I am.

She’s the only kid here with Down syndrome. She is my kid. in those, was around that time, was 2008 she was born. So 2010, a thing called Instagram comes out and I joined that little craze and I started using the phrase the lucky few, because there’s so few of us who love a person with Down syndrome and those of us who do feel very lucky. I felt that way. But as I shared that sentiment with other families, I heard from them as well like, yeah, that’s how I feel. I’ve never had a word for it, but that’s how I feel.

That phrase got put into the world and then was very quickly grabbed up by the Down Syndrome community. And granted, not everybody feels that way, but it is ⁓ a lot of people.

Amy Julia (06:49)
Yeah. I remember when Penny was born, I had no experience with anyone with Down syndrome or intellectual disabilities or physical disabilities, anything. But my sister had been involved in Best Buddies in college and her best buddy had Down syndrome. she would say that that friendship was actually the most meaningful. She ended up transferring out of the college where she was because it was so hard. And she was like, this is the most meaningful relationship I had. And she said to me, ⁓ she didn’t use the words the lucky few. ⁓

This is, but what she said to me was kind of like, I think you’re thinking about this wrong. Like Penny is more important than anyone else in this room because she is rare. she’s, think of this like a rare gem as opposed to a broken piece of pottery or something. You know, I mean, she didn’t, again, use those words, but it was this sense of your vision of this is actually.

almost the opposite of, because again, what I had been told and what I had absorbed from the world around me was to see her as like a problem that needed to be fixed and probably couldn’t be, as opposed to as this like precious gift, which obviously, you you and I both wrote books about these early experiences. And I’ll just tell any listener who’s here that The Lucky Few is the name of your first book, which is a memoir and is ⁓ really…

wonderful and much longer than you just told us story of all of that. But I think that the idea of a good and precious gift or a good and perfect gift, a good and the lucky few is very similar, ⁓ but it does take a while and not obviously everybody gets to a place of seeing it that way. I guess you and I both did.

Heather (08:32)
Yeah.

And I do hear from families all over the place and who are like 100 % agree. I’d say the majority of families who are raising a child with Down syndrome and most of my friends who have Down syndrome feel great about who they are. And the families are so they understand the sentiment behind the less a few. Is it all rainbows and unicorns? Not at all. It’s so hard and life is so hard. And so here we are. Right. Like it’s just the human experience.

Amy Julia (09:00)
Well, so in again, kind of your materials online, when I read about the lucky few, the very short version is an advocacy organization dedicated to shouting worth, shifting narratives and re-imagining what it looks like when we create spaces of belonging. So I’m curious if you could maybe elaborate on really any of those, but what does it look like to shout worth, to shift narratives? Have you seen narratives shift?

in the time you’ve been doing this work. I’d love to kind of hone in on that for a minute and then in a minute we can talk about the spaces of belonging part two.

Heather (09:34)
I mean, to shout, the idea of shouting worth is that we are up against our kids with Down syndrome, people with disabilities are up against so many of those false narratives that it’s not this little whispery thing that needs to be done. This is like any platform, any soap box, any opportunity to say absolutely not. This narrative is untrue and it is harmful. Everybody has value and worth disabled people as they are period full stop have value and worth. Now, whether or not we’re looking at

certain scientific advancements to change certain aspects is not what’s on the table here. It’s who you are as you are, that intrinsic value and worth that you and I share that idea. I think we have different language around it, but we’re on the same path here, So that’s the idea of shouting worth. And one example that I talk about sometimes is with my kids with Down syndrome, so have three kids, like you said, my oldest is 16, she’ll be almost 17, Jiminy Christmas.

and has Down syndrome and then a daughter without disability and my son August is 11 with Down syndrome. And we’re in December months and when we’re going in to sign them up for things, I’m not asking permission if they can be there. No, the expectation is, yeah, this is you are a human. This is a thing for humans who are teenagers, or humans who are 11. So we’re gonna show up. So that’s kind of like in action, Shoutingworth. Now we’re gonna like create a plan of support. And there’s been times we’ve shown up

try to create a plan of support, the support’s not there and so we don’t go. But at the end of the day, my kids are not asking permission to exist in the world. They’re going to show up in the spaces where other humans exist. So that’s kind of like the physical manifestation of this shouting worth. And then in doing all of that in hopes of shifting a narrative, so going back to like the origins story of the lucky few, there was this narrative around what it meant to have a child with Down syndrome that was mostly harmful.

Amy Julia (11:18)
Yeah.

Heather (11:32)
to the point of, and it does still exist today, but to the point of ⁓ termination based solely on a diagnosis, ⁓ both of my kids with Down syndrome, had they not had Down syndrome, would have been parented by their families. So this brokenness that’s happening because of this false idea of what it means to have Down syndrome. And so telling the real true story around what it means to be a person living with Down syndrome and doing that through the books I write, I have a podcast called the Lucky Few Podcast. ⁓

opportunities to speak, the social media work that we’ve done is just telling that true story, not like the feel good story, right? Or the inspirational story. But no, this is what it means to love a child with Down syndrome. Because from my perspective, I can just tell it as the mom, not the person with Down syndrome. And then creating a platform for people with Down syndrome to also be able to say, this is what it means to me to be a person living with Down syndrome, because that’s who we should be hearing from, right?

Amy Julia (12:19)
Yeah.

Heather (12:31)
and all of that and other families. So that’s the narrative shift. I mean, you could speak to this too, Amy and Julia, but there has been a big shift when it comes to a Down syndrome narrative. And so much so in the last 50 years. mean, the fact that 30 years, 40 years ago, 50 years ago for sure that you have Down syndrome, you’re institutionalized, right? All the way to…

people with Down syndrome will never speak, they can’t hold jobs. And then you see people with Down syndrome doing all, accomplishing all of these things that we were told they never would not very long ago. And you see people being more open to people with Down syndrome and you see people with Down syndrome in the media. And so the shift is significant and we’re in it, we’re in the middle of it. And what it be in 50 more years is gonna be significant.

Amy Julia (13:26)
No, I agree. I definitely am amazed at just looking back almost 20 years now for us of being Penny’s mom and recognizing the, mean, you know, think college, for example, as an organization did not exist when Penny was born. And so that now they’re again, not to say that college is where every person with Down syndrome should end up, but the fact that anyone has an imagination for that as a positive good, ⁓ like that.

it was hardly even ⁓ thought about even 20 years ago. And then even just in terms of like medical research being, people with Down syndrome being kind of deserving of medical research that might improve quality of life. And I think about the ways that the life expectancy for our kids has, I mean, tripled in almost our lifetime, right? I mean, it’s like incredible. So I do think there are some really concrete ways in which, I guess that demonstrates the fact that

shifting a narrative is not just a feel good thing. there’s actual, again, like ⁓ of course that’s better in terms of like our understanding of the truth of who humans are and who we are together. But there’s also these real implications as far as like policies and outcomes in, yeah, school and in jobs and ⁓ in healthcare that are incredibly important for individuals as a result of the type of work that you’re doing.

Heather (14:51)
Yeah. Yeah. And even just like in family life, you know, like I met this mom last year who ⁓ her child is like five or six years old and she got the diagnosis in utero and felt pretty devastated at this diagnosis. And she said one day she got home from somewhere and her husband said, babe, I did all this research and people call themselves lucky. Like there are people out there who think they’re lucky for this and how that like he

he heard that idea and it transformed his reaction to his child who was going to enter their life. Right. I think we need to, yeah, when we’re experiencing the unexpected in a way that is kind of in that negative way, right. We’re experiencing that, that there are voices of people who have already been there who can help us imagine, reshape our imagination towards what could come ⁓ is amazing. And then

And I credit to where we’re at with technology and while social media I think is mostly harmful, that’s a very different podcast. There are opportunities to hear and learn of people that we never would have before, to see ourselves in the story in a way we never could have before.

Amy Julia (16:04)
Yep. Now I’ve said it before that I do ⁓ for parents ⁓ who are in the early stages in particular, I do think that, your decision to be on Instagram in 2010 or whatever, and my decision in 2006, a few months after Penny was born to be a blogger who shared photos of our family was informed by my experience of not having an imagination for life with Down syndrome that was actually

positive that mattered that was meaningful in the world. ⁓ And that was meaningful in the world not because Penny actually was going to be someone who had like tremendous accomplishments, but that was meaningful in the world because we were a family that actually loved each other. Like that was it. That was the only, you know, based

Heather (16:49)
Totally. I love that you say that because I, where I’m, what I’m observing in the last few years, especially as an advocate in the space and within those things of like shouting worth and shifting narratives, creating belonging is I feel like this is a little controversial, but I have, but I want your opinion on this. Yeah. I have seen in the Down Syndrome community, especially, and I think this can be true for disability at large, but this pendulum’s shift. So there was this narrative that was so harmful, right? Like literally people are,

not given an opportunity to live a life or separated from family because of this false harmful narrative of what it meant to be a person alive with Down syndrome or you could insert other disabilities. And so we had to prove it wrong, right? Like it had to be proven wrong, ⁓ which wasn’t hard to do because we just had to give opportunity to live a full life. However, the pendulum has swung to like, think of the new mom with a new diagnosis. Don’t worry if your child has Down syndrome because they can and it’s all ability.

It’s all they can go to college, they can drive a car, they can get married, they can have a job, which is all true and really, really important. Those stories have to be told. But what if they can’t? Right. Right. Like, what if they can’t do those things? And so instead, what my heartbeat is, is can we say, my gosh, because this child is going to love you fiercely and you are going to love them. And then let’s build on that because all any kid can or can’t do things. But we’ve gone so far to.

connecting the value and worth of a person with Down syndrome to what they’re able to do, that it really makes my heart feel burdened for people with Down syndrome and for parents who then have to like strive so hard to get your kid to be and do A, C, and D when it’s like, no, the gift is who they are, right?

Amy Julia (18:34)
In fact, in my life, part of the gift of Penny has been in helping me unlearn the lesson I learned about myself as the gift is only in my abilities as opposed to the gift is who I am. My abilities may come and go, I might fail at things, I might never X, Y, or Z, and that does not in any way

mess with my intrinsic worth in this world. And once I understood that about her, it gave me just a very, very different understanding of myself as a beloved human, period. And so again, I needed to understand that about her in some ways for different reasons maybe than I did for me. Like there were different narratives that I needed to disrupt. But in both cases, when my identity for myself or my identity that I understand her to have is based on ability, it is

A, something that is going to be continually in question because the ability may or may not prove itself effective. It may change. Like I might not or she might not have that ability anymore, you know. And yet if the identity is based on belovedness, then I think it actually can give us great freedom to explore abilities. Like to say, okay, you’re loved. What do you love? Like what do you passion about? What do you want to explore? And whether it goes well or badly, so to speak, doesn’t actually

change who you are, I think there could be tremendous freedom, both for people with Down syndrome and for the rest of us, if we could change the way we understand identity. And Penny has certainly helped me with that.

Heather (20:10)
Yes, and that’s that has been for me the invitation, like everything you said, yes and amen. it’s part it’s a huge reason why I want to invite other people into it as well, because it is knowing and loving people with Down syndrome has been so freeing for me ⁓ to see myself a certain way. Right. And to to like and it spills over. have a daughter without a disability. It just spills over into every relationship.

that I have this idea of like, oh my gosh, who you are as you are is so good. Let’s start there. Do we have room to change and grow? That’s being a human, of course. Like that’s what life’s about, learning and growing and changing. But oh my gosh, this is the starting point for you. Oh, then it is for me too. And that’s so freeing. Yeah.

Amy Julia (20:56)
Yeah. Yeah, absolutely. Well, so this is all a nice segue into your most recent book, but let’s talk for a minute just in general. You’ve written a couple of different children’s books, and the most recent one, again, I want to talk about, which is called I Like You So Much. But I’m curious to hear you just talk about where children’s books fit into the work of narrative shifting.

Heather (21:18)
⁓ I’ve always said and I’ve observed this, like if someone meets my daughter Macy, if she met you when you were in preschool together, or if you’ve met her as a small child, if your child meets a person who is fill in the blank, has some kind of a disability, some kind of a different way of being in the world, child, those children are going to connect without judgment. It’s just curiosity and they’re going to create relationships and then those relationships are going to spill over year after year after year.

compared to if in fifth grade you meet my daughter Mason as the first person you’ve ever met with Down syndrome, the likelihood of a relationship is very slim because she’s so different, right? And so then now there’s like a fear of the unknown instead of a curiosity and being drawn into it. And there’s studies done that I’ve read that I’d have to pull up the exact statistic, but we do as humans start as curious and then we become judgmental.

And there’s outside factors that affect all of that. But those judgments keep us from being in relationship with people who are different from us and instead create barriers and boundaries between ourselves and those who are different. So my first children’s book is called Different, A Great Thing to Be. My second one is Everyone Belongs and my next is I Like You So Much. And all of them have this like central message of embracing people as they are and creating space for all different kinds of people. And they’re

I went from writing adult books to children’s books because that’s our starting point with any lesson, you know, is kids. And so to create a tool where maybe a parent also has never had an interaction with someone who has a disability, it’s like, that’s okay. You can’t know what you don’t know. We can’t create like harmful judgment around that because how can you know what you don’t know? But here’s something to help you know and to help your kid know. Because then your kid’s going to enter the world. ⁓

more compassionate, more empathetic, more open to being around people who are different from them.

Amy Julia (23:23)
I think it also one of ⁓ I ⁓ don’t know, things that achieves ⁓ is to normalize the idea of difference. I think there are lots of people who don’t have experience with disability. And I think we can see this with other human differences as well, where it seems like, especially as a parent, like, we’re not supposed to notice that.

So in some ways, the curiosity that our child might have about someone else’s behavior that seems different or appearance that seems different is seen as bad and negative because parents can view that through that lens of like judgment and ⁓ pushing away. it’s like, don’t talk about that as opposed to no different is a great way to be. this is actually an opportunity for curiosity. I remember our son, William, when he was three, was in an integrated preschool classroom with other kids with disabilities.

He didn’t have a disability and I didn’t know what anybody else’s diagnosis was. But he came home one day and he described a little girl in his classroom. He said, I don’t know, let’s call her Ashley. ⁓ Ashley cries a lot and doesn’t share her toys. And I just remember feeling like, this is my moment to not put William in a position of being the kind child who needs to just be nice to Ashley because she has a problem. I just felt like that was…

what I had been kind of primed by the rest of my life to do, but I really wanted to be like, how do I help him, like not shame him for having noticed these things about Ashley, but also not put him in some like, well, you can be a helper because Ashley, you know. And so I just said, was like, gosh, sounds like something is hard for Ashley in the classroom. Are there things that are hard for you?

And he talked about that. And I was like, have you ever noticed things that Ashley’s really good at or that she really enjoys? And he talked about that. And I asked him about that for him. And like, we just had this conversation where it really did become him stating a fact about his, you know, companion in class. I don’t know if they were friends or not. And me being able to kind of find my way into a conversation that had more to do with curiosity and came out, I think, in a place where it was like, yeah.

There are things in the classroom that are challenging for Ashley and there are things that are challenging for you and they’re different things. So yeah, maybe you guys can help each other in those ways, but it became, it kept it like mutual rather than becoming hierarchical. And I’m sure there are plenty of ways in which William has picked up a message that he’s supposed to be the helper in our family and in the world. Like I’m not sure that I’ve succeeded in that, you know.

undoing that message. But in that moment, I felt like I was learning a little bit of a different way to approach ⁓ mutuality in relationships without trying to ⁓ say there is no difference or the difference is so severe that it means you are in a kind of position of

being the kind one and she is in the position of being the needy one. But actually both of you have those opportunities. I think that’s some of what your work is, helping parents ⁓ have conversations with their children about, or even just giving them language for

Heather (26:36)
Yes, yes. Oh my gosh, it’s such a good example. And I feel like you should write a whole something about that if you haven’t yet an article, a book, do something so.

Amy Julia (26:44)
I think there’s a chapter in Small Talk which came out 10 years ago, but nevertheless, I do think I wrote about that in that.

Heather (26:50)
So good to revisit because the idea of mutuality is one that is often, in my experience, completely missed when we’re talking about being a child with a disability or when we talk about being friends with or in relationship with a child with a disability when you don’t have one. It’s just missed. And then we create this idea around this hierarchy of people ⁓ of like non-disabled, disabled, and you sweep.

non-disabled person. look how sweet your friends with Macy. It’s like, my gosh. mean, like, you know, in elementary school, one of Mason’s good friends, ⁓ one day after school, she came over and she goes, I got this bear paw at school today for playing with Macy on the playground during recess. And I lost, mean, internally lost my mind. And I’m like, wow, let’s talk about that. And then went to the school right away. Like, what are you doing? Like what in the world? Yeah. You’re rewarding Mason’s friend for playing with her.

Let’s step back. What are we communicating? But I think that idea is still so tightly wound around disability. because there’s not a lot of opportunity for non-disabled people to come into mutual relationships with disabled people because we’re still very much a segregated world when it comes to disability and that. with these books, I, ⁓ it is a real hope of my heart that they are tools that parents…

can then be invited to have a further conversation. You can just sit and read the book and it’s a sweet book to read to your kids, right? ⁓ But then also there’s gonna be pictures in it that it’s gonna be a kid that looks a certain way. And so then you get to in the safety of your living room, have these hard conversations and say to your kid, don’t know. Well, let’s learn this together. Why don’t we pull up Google? Because that’s a great tool. And let’s find out what this is and what this means. And yeah, I feel nervous too. When I’m around someone who’s different from me.

That makes me feel certain ways too. get this feeling in my stomach. Do you feel that way? Like we can have those conversations and start to unpack that in our living rooms so that when we leave our living rooms, our kids can see a person and be like, ⁓ I know this because this isn’t my first introduction to it. I saw it in the book.

Amy Julia (28:58)
Yep. Let’s, this is, you touched on this in what you were saying about ⁓ how segregated our society still is when it comes to disability. And that’s true from early days, you know, up certainly through adult spaces. And one of the things that you ⁓ want the lucky few and all the work that you’re doing to be is about creating spaces of belonging. And so I’d love to just talk about that. What is a space of belonging? Why are they so, ⁓

rare in our society, where have you seen them, where have you not, you know, if you can just speak about like the idea of a space of belonging.

Heather (29:34)
Yeah. mean, finding belonging is what like it’s the deepest desire of every human being, maybe even every mammal. Right. Like this is this is how we are created. There is no getting away from it. It is the thing that we are striving and wanting and needing from that second. So it’s it is being human is to find go in search of and find belonging. ⁓

And I, in my own personal life, when I’m finding spaces that I feel a sense of belonging with my family, like my family unit with the makeup of our family, I talk about like shoulder up spaces and shoulder down spaces and places of belonging, I can have my shoulders down and we just get to be who we are. So we get to show up in a space unapologetically ourselves and we just get to be. And those spaces are so…

so few. feel like I can count them on one hand, right? ⁓ But it doesn’t have to be that way. And I am my best self in those spaces and most open to inviting others in as well. ⁓ Because I think when we find that place of belonging, it gives us a sense of the security in who we are. And we don’t have to be

apologetic for who that person is, we just get to be. And that is an inviting environment, right? Like that’s the kind of place I want to walk into. So then you hopefully other people want to walk into that.

Amy Julia (31:12)
So what do you think characterizes, like are there, I mean, again, not to put this into like in the four steps towards becoming a space of belonging, but do you feel like there are ways to identify whether it’s ⁓ attitudes or like, yeah, practices, so to speak, that create spaces of belonging?

Heather (31:30)
⁓ It’s interesting that you said like the four steps to belonging, because I’ll talk about this with different people and it is frustrating because it isn’t a checklist. Like it is a thing of the heart. It’s foundational. It’s a thing of the heart. It’s a mindset and you can’t do A, C, and D and then be that way. ⁓ And so I think that like step one is an awareness around it. I think self-awareness and awareness around, am I a

Am I in spaces? Am I creating spaces within my power that are spaces where people feel a sense of belonging? ⁓ What is my idea about certain kinds of people? I want people to ask, what do I think about people with Down syndrome? Do I think, they’re so cute. And they are, they’re real cute. is there something about a certain people group that I have this mindset or this idea of that’s dehumanizing to them? ⁓ and then you have to…

do that internal work. It’s hard. It’s hard work. I wish it was just to do these three things and you can create spaces of belonging. think another, something that is a little more tangible is notice who’s missing in a space. Like that you can do this in your schools, in your churches, in your community. Like who isn’t there? When was the last time you saw a person with a disability in a mutual way at your school?

or at your kid’s school or in your church. And if that’s missing, then you need to ask yourself, why is this missing? And have those hard conversations. What the power is that be? Maybe you’re that power. ⁓

Amy Julia (33:06)
Yeah, and I’ve been thinking, I wrote actually last summer, I wrote a little bit about like creating actually a space of belonging within our own family ⁓ because we only have Penny with Down syndrome. So I’ve got two typically developing kids, all of, we’ve got lots of cousins and aunts and uncles and everyone embraces Penny, but at the same time, she is the only person with the kind of same, the physical and intellectual limitations that she has are different than everybody else in the family.

And I was thinking about it in terms of, okay, how do we create a space of belonging that also still allows other people in the summertime to, know, Penny has absolutely no interest in riding a bike. And so is it like bad for people to go on a bike ride and when Penny can’t go. And we actually ended up getting a tandem bike, which after many years, and she does enjoy that, which is actually was this wonderful solution. But before we even got to that, I was like, you know, or there are certain card games that she’s not interested in playing.

And I’ve been thinking about like, okay, if all we are doing is playing games that exclude Penny or going on doing activities that exclude Penny, then there’s no way we are creating a space of belonging. At the same time, if there’s a sense of like, have central activities as a family and everybody has a part to play in that, again, whether that’s like being on a tandem bike or ⁓ being the person who’s like keeping score if it’s a game that you don’t want to play, but you want to be a part of. ⁓

Honestly, there are many times as a family where we choose not to do something because it would mean that Penny can’t do it. But I’ve just been thinking about the like, how do you create spaces of belonging that still allow people to be themselves and not that doesn’t like flatten everything out to like we’re all we all have to have the same abilities and the same interests and the same. ⁓ Yeah, ways of, you know, exploring the world. I’m curious if you have any thoughts about that.

Heather (35:03)
mean, as I’m hearing you say all that, what I was thinking of is again, that like, foundational mindset of in our family. Yeah. And I’m thinking about all our families together. Macy’s not, my daughter Macy isn’t one to jump in and participate in much that’s going on, but she knows she can show up as she is and she’s embraced in the group. Right? So it is, it’s less about what we’re actually doing and more about the fact that she can come in and out at any time and

lean on someone or make herself known or say that she likes something or doesn’t. And there’s no question in the room whether she gets to be that person or not. Right. So I like what you’re saying too about. then also let’s be intentional and find an activity where we can all connect, which I just feel like that as a parent, like with my kids, like how can we do something intentionally so the five of us can just connect with each other? So I like that too. But there also is that sense of, ⁓

Amy Julia (35:42)
Yeah.

Heather (36:01)
who you are as you are, get to be in, you get to show up as you are in this space and you don’t have to be anything else. You don’t have to like the game and you still get to be here. And everyone in the room, there’s just no question about it. I think you could probably picture this when you’re with family too. Whereas it’s different when she’s in a room with a bunch of other peers, like her teenage friends, it does feel like, we got to find something, ways for them to connect. But the people who know her and love her and cherish her, the belonging is built in because they’ve known and

They know her and love her.

Amy Julia (36:32)
for her. Yeah. And so that’s, don’t know, I just think about that as far as creating spaces of belonging in churches or in schools, you know, where, again, there are going to be kids and I was never one of them who want to study like advanced physics. And I’m not sure that it’s like an exclusionary space that I would never want to be there.

Heather (36:34)
That’s what I’m thinking.

Amy Julia (36:54)
And quite frankly, I’m fairly certain that my brain would never be able to be there in that space. But I was never devalued as a result of not being there. And I think maybe that’s a part of it. And of course, the people who were in the advanced physics class also were at the lunch table with me. so I think there are just some, I don’t know, I feel like there are some ways that if we were to be in a different place with the postures of our heart,

⁓ as towards one another that sense of like just an implicit ⁓ worth known, you’re valued and beloved, right? Then some of these other questions, it wouldn’t seem like, ⁓ advanced physics class is a segregated space. It would seem like it is a particular space for the people who are interested in this. Yeah. But maybe not quite so, ⁓ I don’t know, divided. ⁓

Heather (37:48)
Yeah.

Yeah. think what I think people get a little tripped up sometimes when you talk about belonging and inclusion is like, so what everyone gets to be there and that no belonging and inclusion absolutely includes separate spaces. The way that I’ve come to understand it is we can have a separate space that honors and a separate space that others. And so we create separate spaces that honor all day long. Like we have to have those. middle daughter is black and in a family that’s all white.

and she started a black student union at her school. And it’s like, yes, you are gonna have a space where the people who look like you in the space are gonna get together because that honors who you are. And the understanding of the majority of the other people on campus are, this is an honoring thing. Whereas in disability, it’s often been like, you are different, so you will go here to this other place, right? So it’s othering. But absolutely we need to have separate spaces.

Like to have everyone in a space can become very harmful for other people or silly, like the physics thing. It’s like, why in the world would Mason take a physics class? And why would I? And why would we ask all these people who want to sit at lunch together and discuss physics to like come talk about hair and nails with someone? Like, no, no, we can do this. It’s not about, yes, separate is very important and it’s not a harmful thing. It’s what we’re communicating to the people in the separate space.

And in the disability, what my kids with disability, what we’re lacking so much is that who you are as you are, you are an asset. It’s not. When we look at people with disability, we say who you are as you are, there is a deficit here and you’re going to need to change in order to be a part of. That’s not belonging. Right? That’s the opposite.

Amy Julia (39:40)
That’s really helpful to me, what you just said, all of it, but the honoring versus othering, and yet they’re being said, because I’ve felt the same way where I’m like, affinity spaces are good. Penny is at a, it’s interesting, she’s at a college program now. ⁓ One thing I actually really like about it is that there are about 30 or 40 students in the program who all have intellectual disabilities, and she is really forging friendships, ⁓ and it’s easier for her in that space than it has been for much of her life where

⁓ She has just had a harder time. She’s been kind of thrown into the mix with typical kids and there have been some friendships, but it’s been harder. At the same time, one thing I find is that this program is fairly segregated on campus. so, and I wish there were more interaction, were both, both Anne, like there were opportunities for her to have almost like an affinity group where it’s like shoulders down, you know, this is.

And honestly, think seeing disability as a positive aspect of identity where other people who have that same identity can understand me and be alongside me in a different way. Great. ⁓ But at the same time, wanting there, as you just said, like to be an assumption in the wider community that, yes, you belong here and your presence is an asset and a value rather than just this weird thing that happens over on the side at our school.

Heather (41:01)
Yeah, I always say that about inclusion at school. Like, ⁓ it is not bad to have separate living skills classes in your school, but are those classes viewed as an important part of the larger school community? And if they are, it will be reflected in that community, but often it’s not. It’s the separate other space over here. Whereas when it’s the honoring space, that community is seen as an important part. The smaller community is seen as an important part of the broader community and needs to be a part of it. ⁓

And that’s that’s where the yeah, it’s so much it’s real tricky.

Amy Julia (41:36)
Well, for anyone who’s listening, I subscribe to your, you sub stack and so read some of your reflections along these lines regularly. And I highly recommend them because I do think you do a great job of telling stories, but also articulating some of these ⁓ kind of broader truths that have been really helpful for me ⁓ as a mom and as someone who thinks about these things. I’ll just, ⁓ we’ll put a link in the show notes to that. But as

We come to the end of this conversation. I could ask you many more questions, but I was thinking about, again, back to this most recent book that I like you so much. What I love about it, we’ve talked a little bit about the class that I teach, the workshop on reimagining family life with disability. And the kind of first, I don’t know, tenet of that is to delight in your child. Like if you’re a parent who has a child with a disability, to like delight in your child as like the beginning of…

your journey, which doesn’t mean there’s no lament or grief involved. It doesn’t mean that you’re never gonna face hard things or suffering, but that sense of like beginning with delight. in this book, there’s a lot of like celebration and delight over who we are as we are. And I just wanted to ask you how you think that work of delight or celebration helps us in the work of re-imagining.

the world of reimagining spaces, of reimagining narratives, of all of that. Yeah, why is delight and celebration so important?

Heather (43:01)
I gosh, think delight and celebration. ⁓

They feel important to what I’m thinking, especially about kids and being an adult who loves a child, like a parent who loves a child. It’s such the easy, it’s how do I articulate this? It’s the starting point. It’s like the jumping off point. You think of a mom and a new baby. Oh my gosh, like the feelings that you’re physiologically are happening to your body. It is delight, right? Like it’s just that it is what it should be and what it’s supposed to be.

And then we get these outside narratives ⁓ for any of us and our kids and really, really young about like, this is why we celebrate who you are, right? We’re going to read this children’s book and the kid in the book who’s the hero is going to be celebrated for all that they can do and because they do this and because they are this. And wait a second, what if we’re just going to celebrate you and delight in you because you’re you? That’s it. You know, like that’s it. You’re you. And

Amy Julia (44:03)
Yeah.

Heather (44:07)
We’re going to love the body you have because it’s the only body like it. And it’s great. Not because of how fast you run or not because of how fast you swim or not because of how high you jump, but wow, look at your body. It’s amazing. And we’re going to celebrate who you are because you’re trying your best. And that’s what’s best about you. And not because you got a first place ribbon because you know what? You may never get a first place ribbon. And that’s OK because that’s not what we’re putting your value and worth on. We’re not delighting in that.

We’re delighting in you. So I think it’s our most natural instinct to do as a person who loves a child is to delight in that person. And then those outside narratives come in and start to mess with us. So it’s like a way to protect or to remind, to tether us, right? I would love for my new book as a tool, as something that you read over your child that is just like a love letter and to like,

Amy Julia (44:39)
Yeah.

Heather (45:07)
tether us, right? To buoy us and tether us to these things that we know are true, that we’re going to be fighting the outside narrative so much. So now let’s go back to this. You are important and you are to be celebrated. And the reason I like you is because you’re you, period.

Amy Julia (45:17)
Yeah.

Well, I think that’s a good place to end this and I really am grateful for ⁓ that message. And obviously on a podcast, it’s hard to convey the illustrations part of this book, but it’s really, it’s a fun, beautiful book in every part of it. So thank you for bringing that into the world, but thank you also for the work that you do and for sharing just a little, a little bit of that with us here today.

Heather (45:47)
Thank you, Amy Julia. This is just a thrill to get to hang out with you today. Thank you.

Amy Julia (45:57)
Thanks as always for listening to this episode of Reimagining the Good Life. I will say it one more time, this is the final episode of this season and I would love to stay in touch. So please do use the link in the show notes to subscribe to my email list. You’ll be the first to know about some exciting new projects that are coming up in the fall. And of course the email list will also tell you when this podcast is starting up again. I also use email to…

receive your questions or suggestions, you can email me directly at amyjuliabeckerwriter at gmail.com or also again through Substack or all sorts of social media spaces. I always am grateful when you share this conversation with others and rate or review it. That helps other people know about it. The algorithm likes ratings and reviews. So if you want to get the word out about this conversation, please help me to do that.

And then I finally want to end with some thanks to Jake Hansen for editing this podcast, to Amber Beery, my social media coordinator. She does everything and more behind the scenes to make sure that all of this happens. And I’m also thankful to you for being here and giving me some of your time and your, ⁓ so many of you write me and tell me how you are thinking also, and you challenge me and you help me to ⁓ think more deeply and broadly about all of these topics. So thank you for that.

I hope this conversation is just one among many that helps you to challenge assumptions, proclaim belovedness, and envision a world of belonging where everyone matters. Let’s reimagine the good life together.