“You belong here, as you are, who you are. Come be in this place with us.” Down syndrome advocate and author Heather Avis joins Amy Julia to talk about the importance of people with Down syndrome, celebrating Down Syndrome Awareness Month, and creating spaces of belovedness and belonging.
“Founder of The Lucky Few and The Lucky Few Foundation, Heather Avis is a New York Times bestselling author, podcaster, and Down syndrome advocate, working to create a more inclusive world where everyone belongs.”
On the Podcast:
For full show notes, transcript, and more, go to: amyjuliabecker.com/heather-avis/
I’m joining Heather and other moms of kids with Down syndrome over on Instagram to give away our favorite picture books and memoirs in celebration of Down Syndrome Awareness month.
You can find all the details on my October 5, 2022, Instagram post @amyjuliabecker.
Season 6 of the Love Is Stronger Than Fear podcast connects to themes in my latest book, To Be Made Well, which you can order here! Learn more about my writing and speaking at amyjuliabecker.com.
*A transcript of this episode will be available soon, as well as a video with closed captions on my
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Note: This transcript is autogenerated using speech recognition software and does contain errors. Please check the corresponding audio before quoting in print.
For me, it was my experience stepping into the role as a mother to a disabled child that transformed me. It ended things in me that needed to be undone and in ways of thinking and believing and being in the world You know. So then as that's my in me, then I can say, Oh, exactly who you are is exactly who we pick. You belong here right as you are who you are. Come be in this place with us
Amy Julia (32s):
Hi Friends, I'm Amy Julia Becker And. This is Love is Stronger Than Fear A podcast about pursuing hope and healing in the midst of personal pain and social division. Heather Avis is here with me today. And for those of you who don't already know Heather's work, she's the Founder of The Lucky Few. She's also the Founder of The Lucky Few Foundation. And she is a many times over New York Times bestselling author. She's a podcaster, she's an advocate for people with down Syndrome. And for those of you who are listening in real time, I do wanna let You know that tomorrow, which is Wednesday, October 5th, I am partnering with Heather and with other moms who have kids with Down Syndrome.
Amy Julia (1m 13s):
And we are partnering over on Instagram to give away our favorite picture books and memoirs in celebration of down Syndrome awareness month. So you can find all the details on Wednesday's Instagram Post at Amy Julia Becker. So just go check that out tomorrow or later on this week. And today you're gonna get to hear more about Heather's own story and about the importance of people with down Syndrome to all of us. We also get to have a wonderful conversation about creating spaces of belovedness and belonging. I'm so glad you're here, Heather. It is such a treat to be here with you today.
Amy Julia (1m 54s):
Thank you so much for joining us.
Heather (1m 56s):
Oh my goodness, Amy Julia, when you're request popped up in my email or your name, you're just one of my favorites, so I'm like, Yes, let's spend time together. Thank you for having me.
Amy Julia (2m 6s):
I know I have said to a couple of people over the past year that like having not been to a conference since pre covid and not doing a ton of traveling, even now, I feel like my podcast is like this little way that I get to have meaningful conversations with people that I might otherwise just kind of miss out on. I mean, I, I hear, I listen to your podcast so I hear your voice sometimes, but I don't get to have a conversation with you. So it's really fun to be able to do that today. So yes, All, right? Let me explain to people who are listening, why I'm so excited to be talking to you and You know this, but maybe some listeners don't. October is down Syndrome Awareness Month and so I wanted to ask you to be on the show as a person to interview because this is a month of celebration and advocacy and to steal a tagline shouting the worth of people with down Syndrome, which we'll talk about in a minute.
Amy Julia (2m 58s):
But I'm sure there are people who are listening to this podcast and they don't know why I called upon Heather Avis to have this conversation. So I'm wondering if you could introduce yourself and your family and also this organization that you lead called The. Lucky. Few,
Heather (3m 13s):
Yeah, definitely. Happy down Syndrome Awareness Month, everybody. So I am Heather Avis. I live in Southern California with my husband of 20 years Josh and our three kids who are 14, 11 and eight. I grew up in Southern California and my oldest is a girl Mason. My middle daughter's truly, my youngest is my son, August Mason in August. Both have down Syndrome and all three of our kids came to us through adoption, all born in Southern California. That's a whole long story. That is probably another podcast, but we can, I can answer whatever questions. And I.
Heather (3m 53s):
When Macy entered my life as a, as a little girl with down Syndrome, she was three and a half months old. And I was a special education teacher. So I have mild, moderate, and moderate severe teaching credentials. Worked with people with down Syndrome, loved people with down Syndrome, but that was not who my child was gonna be. That was not my story. And so when we learned about Macy And that there was this baby who was available to be adopted, the narrative I had around being a mother to a child with down Syndrome was negative And. That was also what was being whispered in my ear or just said very blatantly out loud by people like, Why would you do this? Why would you adopt a child with down Syndrome? You don't have to do this And that.
Heather (4m 35s):
And society at large, just like down Syndrome equals bad and a very long story. We end up saying yes to bring this baby girl home. She comes home and I'm holding her and I'm like, She's just a, this is a baby first, right? First and foremost, she's a baby and she's amazing. Whoa. Like this kid's amazing. And then as as she's growing up and in those first few months, those first couple years, just realizing that there's this narrative around down Syndrome outside of the down Syndrome space that is very negative. Yeah, attached to devastation down Syndrome equals bad. And then you enter into the down Syndrome space as a person who knows and loves a person with down Syndrome.
Heather (5m 15s):
And it's not all rainbows and unicorn unicorns, but I had met so many people and everyone I had met who loves Sloan with Down Syndrome was like, This person with down Syndrome has changed my life forever and for the better. And so there's this disconnect, right? Like the major disconnect between what society is telling us and what people are experiencing and, and in those years I started feeling so unbelievably lucky to have Mason as my daughter. I remember being at the park with her when she was toddling. So she's probably three or four and like looking around like a moment of clarity almost where I saw all the parents there whose kids didn't have down Syndrome.
Heather (5m 55s):
And. I was the only mom there with a kid with down Syndrome. And. I was so overwhelmed like, I get her, this is what I get to do. I'm so lucky. I'm so lucky. And at the same time, social media started emerging. So yeah, Macy was born 14 years ago, almost 15 years ago. And so Instagram comes on the scene and a friend encourages me to start an Instagram account just sharing about down Syndrome for people to see like what is the real story? What is it like to a day in the life of raising a child with down Syndrome? So we started sharing our lives a little bit more publicly and using this hashtag the phrase The Lucky Few. And, and it just took off, I guess is the best way to describe it.
Heather (6m 37s):
And it's been about, from the beginning, it's been about, for us, for me and for the work at The Lucky Few shifting the narrative, there's this narrative that needs to change. And again, it's not all this is so good and it's the best thing ever. It's it's life and it's more quote, normal life than not. And it's not bad or scary and it's hard and hard is not bad. And, and these lessons that I've learned with Macy's, my daughter, so that it's just been an unfolding of stepping into opportunities, seeing where there's a lack of story and a lack of relationship and trying to fill that with the, the gifts and talents that I have.
Heather (7m 17s):
And I got tried a book and then I've written a few books and wow, it's just been this unfolding. So The, Lucky, Few started out as just a mom saying, Hey world, I'm really lucky to have a child with down Syndrome. There's there's few of us and we're really lucky. And then people in this space being like, Wait a second, I feel this sentiment too. Yeah, I just got this letter from a mom I met at a retreat from Mom. So kids with Down Syndrome, her child is a toddler and she hands me this letter and it's beautiful But it. In the first paragraph she said, When I got my diagnosis, one of the first words I heard was the word Lucky And. That's because of you.
Heather (7m 57s):
And I wouldn't have heard that otherwise. And it was like a moment of, whoa, okay. That work that we started out accidentally doing 10 years ago, 12 years ago, it's shifting a narrative You know. That's super
Amy Julia (8m 12s):
Cool. Yeah. Well I, I wanna just like respond a little bit to your story and also to say that your first book, right, which is a book for adults memoir called The Lucky Few tells that story that you just gave us in You know three minutes. It tells us that in You know 180 pages or whatever it is, right? For listeners who are interested, it's a beautiful book and it's an amazing story. And I, just wanna You know, note that here. But also I remember when Penny was born, which would've been a couple of years earlier than your initial You know, having Macy in your life and my sister who had had some interaction much more than I had with people with Down Syndrome.
Amy Julia (8m 53s):
I remember saying something along the lines of like, Penny's life is important too. And this was very, very early and she was like, I think Penny's life might be more important than almost anyone else we know because there are so few people who have what she has to offer. Like, right. And it was kind of a similar sentiment and it was really helpful for me just in thinking about the significance of not just like, Oh, I can see her as being like everybody else and find a sense of common humanity, all of which is true. But actually there's like just something distinctively important about people with down Syndrome because of their distinctions, because of their differences. And then the other thing I was gonna say, just kind of in response to what you had to say was, I really have, as much as social media can be a place where there's all sorts of comparisons happening and You know just wasted time and negativity and et cetera.
Amy Julia (9m 45s):
One of the things I've heard so much from people who have been connected, especially to The Lucky Few community, has been that sense of providing a space when there is not a space elsewhere to connect. And not again, rainbows and unicorns and sugarcoating a hard reality, but being welcomed into finding beauty and joy and hope and and goodness in the midst of that reality. And I, think You know some of that is just the nature of social media. Some of it is specifically Instagram and the photographs, like the fact that I remember being like, I need to see images of families and individuals.
Amy Julia (10m 28s):
That was part of why we started a blog was because back in the day, that's what it was, was simply to be like, And back then it was like, Oh gosh, privacy, are you really gonna show the face of your child on the internet? What's gonna happen? And Peter And I, I remember us saying like we needed to see the faces of children with down Syndrome and there aren't enough in our community. Yeah. And so we're gonna, we're gonna do that. We're gonna put that You know in that case on the blog. So I do know from many, many people who've just spoken to me about the work you're doing that that has been such a powerful way to care, to create a community, but also to care for individuals who have otherwise felt really alone. So it's, it's really beautiful to see social media used for good.
Amy Julia (11m 10s):
So I wanna pause for a minute though. You know you And I are both mothers of children with Down Syndrome, but many of the listeners of this podcast are not directly connected to someone with Down Syndrome. And so we're talking in You know as we come upon down Syndrome Awareness Month. And I'd love to hear from you like why should it matter to someone who's not personally invested in the community of people with Down Syndrome? Why should it matter that we are celebrating or observing or whatever we wanna call it down Syndrome awareness month? What do you think?
Heather (11m 39s):
Yes, I have thoughts. I think it, I think the starting point is more like why should someone else's life matter to anybody that like I think that's a bigger conversation. But that we have to ask ourselves that in simultaneous to this question. Yeah. Because if other people's lives outside of your life don't matter, then that's then there's no conversation to be had. But if you can say other people's lives outside of my life matter, then we can insert different people groups into that. And people with down Syndrome should matter to everybody because every, Everyone should matter to everybody. Right. Like that's kind of the bigger umbrella. I think there's a lot of pieces here.
Heather (12m 20s):
I mean we could go the route of, because people with down Syndrome, because the lives people with down Syndrome don't matter to everybody. We are losing the lives of people with down Syndrome to termination in utero. Yeah. Audi, significant rate, majority of women who get an diagnosis terminate in the United States in worldwide. And so that, that should matter. I mean that should matter for the lives of people down Syndrome and then those who are born that they, people at down Syndrome don't matter to everybody. They are up against a society in which their question and value is their value. And worth is at in question And that reflects in every space they step into.
Heather (13m 4s):
And to be a human being that steps into a grocery store, walks down the street, a church, a school, any community, anything. And instantly who they are as a human being is questioned if they have value and worth. It's questioned And. That is traumatizing for Yeah. A person and for an entire people group and then those who love them And. That should matter. That should matter to us. And then you can take it another step where I can think of myself personally and how my life has been transformed by people with down Syndrome. Yeah. And how my daughter Macy has been this guide for me to see the intrinsic value and worth in in her, which is an invitation to see it in everybody.
Heather (13m 49s):
And including myself. And I wouldn't have that without her. There's like a tethering, I think to my humanity, like to what it means to be human that she's given me as a person with down Syndrome. If I did not have her in my life. And if I didn't have other people with down Syndrome in my life and then disability at large, I wouldn't, I'd be missing that And I think we can look at our culture. I have no stats to prove any of this All. Right. I am not a, a researcher. That is not my wheelhouse. So it's just someone can come at me and be like, you have no idea. But I have a feeling and in the life I've led and the people I've known and met, I think that our collective humanity, I don, I dunno if I need to define that.
Heather (14m 37s):
Just all of the human beings. And then we can look at it more so on the level of like our communities, right? Those that we're connected to, whether it's physically in our community or whether it's through social media or media, large, whatever it is, we are miserable. I don't think that people can argue that. Like we are really lost. Yeah. And we are fighting each other and we don't know if we have value or worth and we're trying to like hustle, hustle, hustle to do more and be more and make it better. And everybody's pretty miserable in that. And then I have Mason, this person with down Syndrome who it doesn't matter how much she hustles or how hard she works because she has down Syndrome, there are limitations to what she will and will not do and what she can and cannot do.
Heather (15m 26s):
And she is my invitation to say And that is okay And. That is not bad. And actually that's this invitation to step back and say, Wow, as she is, she has value and worth, which means I do. Which means you do. And if we aren't as humans, if we aren't doing that and saying that to ourselves and to each other, I don't know that there's something we need much more. So that's, that's why we need to know and love someone with down Syndrome.
Amy Julia (15m 56s):
I agree. I mean there's so there's like an injustice piece to things that matters, but then there's also an invitation to belovedness that matters in a whole different way. But there are also somewhat related to each other because if we can start to understand that sense of belovedness, not because of our hustling and our achieving, then that flows into our self understanding But. It also flows into how we see other people And. I'm just thinking about like as you were describing Mason Penny You know similarly is no matter how hard she works, is not going to achieve the same results that a typical kid who is working as hard on a similar thing will achieve.
Amy Julia (16m 43s):
And it's not to say that that never bothers her. I don't wanna paint her as someone who is not affected by our culture. Sure. And by those values and things like that. At the same time, I do have a sense that she has more peace with her own limits than I often do with mine. And that's something that I appreciate about her. And she also seems to receive other people in the midst of their limits without the degree of judgment that I often do. And I think that has something to do. Again, I don't think she would be able to put these in this into words, but there's like a simple truth that she lives with about herself and about other people that I really appreciate And I mean.
Amy Julia (17m 26s):
We could probably talk all day just about like the different things that we've learned by being in the lives of our daughters and You know in your case your son as well in terms of their particular perspective as kids who have down Syndrome. But I just, when you were talking about Mason, it just made me think about some ways in which Penny also has really shown me my humanity. And I'm just really Yeah. Grateful for that.
Heather (17m 51s):
Yeah. And people with Down Syndrome, you have this idea, like they're not a monolith. Every person with Down Syndrome is their own person. They're a unique individual. They have different strengths and weaknesses. And Mason, my daughter and my son August with Down Syndrome could not be more different. I mean they are so different, however, or And I've seen in a lot of people with down Syndrome this similar thread of there's like a lack of inhibition that allows to say, here I am as I am. Yeah. And, and then here you are as you are. And like a full stop.
Heather (18m 31s):
Like I And, I don't need you to be more. And and like you said, it's not to say that our kids don't want to do better and be better and feel those same feelings that we feel and and those same pressures from society. But there is this like, here you are, you're good. Here I am. I'm good.
Amy Julia (18m 49s):
And I love. Yeah. I was, I know we'll get to talk about this maybe in a second, but you And I have both had the experience of Hope Heals camp in the summer, which involves people with multiple different Disabilities, including down Syndrome. But there's a dance party on the final night. And I. Remember someone saying to me, You know if there's anything that invites you to dance. Like no one's watching. It's this. And then we were talking about it. Cause we're like, it's not quite that because it's dancing. Like everyone is watching and saying, I love what I see. Totally. And that's a really different thing than dance. Like no one's watching like, pretend you don't have to hide who you are and go for it. It's like, no, no, you don't have to hide who you are. Just go for it and you will be received with a full embrace.
Amy Julia (19m 32s):
And I. Think that's a little bit of, I don't know. That's what it made me think of when you were just saying that, that sense of, here I am and here you are and I'm delighted. Like there's a, there's a delight to that.
Heather (19m 41s):
Yeah. Yeah. I love how you talk about the belovedness, And I. Yeah. I, I talk about like that intrinsic value worth I think it's in the same vein. Yeah. And I. I know for me, it's just the thing that I desire, I think almost more than anything is to walk into a space and to meet a person and to be in a group. And everybody there is just like, as you are, you are welcome here. I love you You know. Like I just feel that connection. Yeah. And I don't, I've never met a people group who does that better than people with Down Syndrome.
Amy Julia (20m 22s):
Amazing. Well, I wanted to ask you, because I know that you and your family embarked on a Storytelling tour around the United States this past summer. And for anyone who is not a listener of The Lucky Few podcast, you have an episode with your husband Josh describing the tour and some takeaways, And I just really loved hearing it. So I recommend that we'll put a link to it in the, in the the show notes, that conversation. But I'm wondering if you can give like an overview of what that was and You know where you went and why you did it. And then I have a couple questions just about Storytelling, but first just give us that overview.
Heather (20m 59s):
Sure. I I I'm gonna jump back a little bit even to when we started this Instagram account for Mason all these years ago, The, Lucky Few and like the, with the purpose of if people can be invited into the story that surely it will help shift this narrative, right? So we have And I didn't, I didn't call it that at the time. I didn't realize that, but I can look back and go, Oh, from the beginning we have been storytellers of and in hopes of creating relationship, in hopes of creating Change. So we started this year in 2022. Is that what you're wearing? It is. We started a nonprofit foundation for The Lucky Few.
Heather (21m 43s):
So The Lucky Few Foundation with the goal of telling as many stories around down Syndrome as diversely as we can. And in archiving all of them in a, in a space and sharing them with the anyone who wants to see them in hopes of allowing people to see themselves in the narrative. So whether you're an educator who is gonna have a student with down Syndrome for the first time, or a new parent or a grandparent or a sibling or any anyone that you can find yourself in this narrative, you can see yourself and you feel less alone. And also just a place for people to see the whole, the bigness, the vastness, the goodness of people with down Syndrome. So we started collecting stories and we're, we do it through a format of beautiful photos, photographs, and short blurbs, like 400 words or less.
Heather (22m 35s):
Because blessed, it's about as many words as people will read these days. Yeah. Quickly. And so, and we started archiving them on our website, lucky view foundation.org. And then on Instagram, And I, there's just not a lack of stories to be told. So we, a big piece of what we do with the foundation is go to them, go to people and tell their, find their stories and let, help them tell their stories. So we did that this summer. We went to five different cities in a month, brought our whole family. And at each place we did a two or three day gathering. It usually fell on a weekend, like a meal together with everybody the night before. And then throughout the day of professional photographer is at a location and people come and have like an hour chunk and we just gather whoever they want.
Heather (23m 21s):
It can just, some, some pairings were just parents and their child with down Syndrome. Some were educators and aunts and uncles and cousins and friends and therapists and coaches and whoever wanted to come and be a part of it. And we capture a story from each person's perspective. So we did about 250 stories this summer and we are now in the process of getting all of those out into the world. Wow. Starting, I think Nove, the first week of November, we're gonna start showcasing all of that content.
Amy Julia (23m 50s):
I remember a friend of mine had a poster when Penny was first born. Her daughter also has down Syndrome. And I was over at her house and it was, the photographer had, I was probably, I don't know, two or 300 people with Down Syndrome. And the photographer had them all wear the same black shirt and just took basically a headshot against a white wall. So the You know. And, and what it showed was the incredible diversity of whether we're talking about You know, race, gender, ethnicity, but also just like of the expressions on the faces of all of these people. And it was really beautiful. And I would imagine there's something like that happening where there's a common thread in looking at those faces and hearing those stories.
Amy Julia (24m 35s):
And there's also this like beautiful particularity of the different stories, the different individuals involved and getting them all together is, I don't know, it seems like a way to both tell this larger story and also make sure that we're not just saying everybody with down Syndrome has the same story.
Heather (24m 54s):
Right? Yeah. And, and we, yeah. We don't wanna force it to be something. So we have like, here's a helpful way to tell a meaningful story in 400 words. You know, but tell the story you wanna tell, not the one that is gonna make everybody feel good necessarily, because it, because the experience with loving a person with down Syndrome is the human experience. And so it has all of those messy and good and beautiful and hard pieces all intermingled at the same time. It's not just one thing happening. Right. So we wanna tell it that way.
Amy Julia (25m 33s):
Yeah, absolutely. And I. So in terms of telling stories, which seems to be You know, like a, a bit of a through line in terms of the different aspects of your work. I'm thinking also, So you've got two books that are in the nonfiction adult like memoir slash nonfiction category. You've got The Lucky Few podcast, which is also obviously aimed at adults. You've got Instagram and then you've also got your latest books, which are children's books. I've got one right here called Everyone Belongs. And. I'm curious if like you could just speak to the decision to start writing for kids and like, Yeah. What, what, what is the difference in terms of telling stories for adults and telling stories for kids and, and how they, how do they fit together?
Heather (26m 19s):
I mean, there's a few pieces to this. I can go, I can look back at in fifth grade and remember thinking and writing a short story, entering a short story into a competition, like a fun fiction story and Winning the competition and thinking I want to be a children's book author. Like, this is what I wanna do. And then that was fifth grade. And, I Pursued Education and those other things. So then I I, so there's that piece, like it was always something there that I wa that was interested in doing. Yeah. And I've loved children's literature so much prior to having kids. I had lots of children's books that I just loved myself. And so those pieces were important. But really when it comes to this bigger picture of like shifting a narrative, kids are so curious before they are judgemental.
Heather (27m 9s):
I don't know at what age that shifts, if it's an age, what experience. I think it's pretty young, unfortunately. But for the most part, when kids approach my kids with disability, they approach them with curiosity rather than judgment. And it And I. Think about people who in our life there, there have been friends who we've interacted with who were new to us initially with Mason specifically more so. And with August, who just got it. Yeah. You might have this experience too. It's hard to explain right. Where you're like, there was a friend one time in second grade, Maya and Maya just got it.
Heather (27m 50s):
And I met. And I'm like, Why does Maya, what is this You know like this is what Macy desires, this kind of a friendship. Yeah. Why does Maya get it? And then I was invited to Maya's birthday party and she has two aunts who have intellectual Disabilities. Huh. And this has been a thread in relationships with people who get it, kids who get it. Yeah. Like you connect like, Oh, they have a brother who's an autistic brother. Yeah. Oh, they have the, oh, they have this experience with this uncle or whoever. And so there's this idea that our kid, if you're talked to a kid early on and you introduced them to something early on, then it normalizes it. Yeah. So if you have a five year old interacting with a person with down Syndrome, they're gonna, they might notice differences, which isn't a bad thing.
Heather (28m 36s):
It's great. They might call it out. They might feel insecure, they might feel uncomfortable, but we, but you have this opportunity to talk about it. Right. And they're gonna usually step towards it instead of away from it. And when you step towards that discomfort, it becomes less uncomfortable. And then relationships can start to build. That's happening for little kids. They do it naturally. Whereas if you like have a fifth grader who's meeting Macy for the first time, to bridge that gap is really hard to take all of that ableism that's just been built up inside all of us, right? Yeah. In, in a, in a older child or a teenager or an adult, that's a lot of undoing that needs to happen. So then we've got kids.
Heather (29m 16s):
So this is a long answer to how do we write, how do we reach kids? And I know as an adult, how do I get, how do, like what's a powerful thing for me and learning about someone I don't know, it's books. So let's write books. Let's write book. I would love to write a book for children to embrace their differences. To acknowledge that people are different and say this is good. This isn't bad. To be able to have open up like a tool for kids to have conversations around, I don't know what this is, I don't know what this means. I feel different here. I've noticed that this isn't working for me as a person. This person is weird. Or whatever. Like let's, let's open up that conversation with, with tools, And I think children's books are an incredibly powerful And important tool in opening up conversations and building relationships and building bridges.
Amy Julia (30m 7s):
So I wanna follow up on that with a question because I've been thinking a lot lately about the relative lack of kids with down Syndrome as main characters in kind of middle grade and young adult chapter books. I've not to say there's like such a huge array in picture books, but there I've found more picture books that actually have what seems like a You know representation of kids with down Syndrome and fewer in chapter books. And so Penny You know has not ever, I just found one, so we're starting it together. But until, Right like this week has not ever read a chapter book and she's been reading chapter books for years.
Amy Julia (30m 49s):
Right. That has a character with Down Syndrome. I found a lot of chapter books who have kids with autism. I've had kids with cerebral palsy, kids with dyslexia. So we've kind of read those and talked about the experience of having a disability and da da da. But I'm curious, I mean I have some ideas myself, but I'm curious if you have thoughts on whether this is true. Like, I mean, You know, cuz it's not as though there's some database of books about people with down Syndrome that I've been able to check. But my sense is from having You know asked around a fair amount and talk to some librarians and things like this, there really aren't that many people with down Syndrome who are portrayed in this You know kind of eight year old to 16 year old literature let's say.
Amy Julia (31m 31s):
And there are other kids with other Disabilities who are more regularly Portray portrayed there. I'm curious if you have any thoughts on like why that's the case. Like what, what that's might be about.
Heather (31m 41s):
Yeah, I'd love to hear your thoughts too. My first thought is intellectual disability is different than physical disability. And it is, challenge is the, there's a better word for sure. It's a challenge to write about a person with an intellectual disability. And it's a challenge for people with intellectual Disabilities to write about themselves. Right. And express about themselves. I think that's one of the, I think that's maybe one of the biggest hurdles. Maybe I also think that like you're saying, maybe you're wrong cause there's not that there, maybe there's more out there, but you're, if you have to dig as deeply as you've already been, Right, Yes.
Heather (32m 32s):
It's not or it's not mainstream. Right. And that's a, that's the problem. Yeah. And I think, I can think when Macy was born, right? 15, 14 years ago, 15 years ago, how many children's picture books there were with people with disability, just disability that were portrayed in a honoring way and not like sidekick over here who the other person's, the hero, like the able bodied neurotypical person's to hear of the story. I can't, I had to search for them. And then 15 years later there's quite a bit more. We're just not making progress quickly enough.
Amy Julia (33m 10s):
Yeah, I I agree with you on all of those points. Like And I think this actually, it has been important for me as I've been thinking about this to recognize that the ways in which people with Disabilities physical and intellectual do often get portrayed as the sidekick or the innocent. Like there are a lot of, yeah. A fair number of books that have a character with down Syndrome who dies and is again, there's kind of this like innocence and often like a non-verbal presence that is then eliminated. Or, I actually was reading about this, the Newbery medal. There was a group of people who did a study on Newbery Award winners with characters with Disabilities in general.
Amy Julia (33m 51s):
And they said that You know often people yeah, were innocence, they died or they were miraculously healed. But either way it was like disability is not simply something that is allowed to be present as an ongoing aspect of this person's full life. Which I thought was really interesting. But I also, And I also noticed that at least the books that we have read in our household, which include Wonder, which obviously is like swept the globe. And I Love it. Big fan. There's a book called Fish in a Tree, which is a read that Girl with dyslexia, a book called Out of My Mind, which is a girl with terrible palsy. And then another one called Counting by Sevens, which has a girl with autism.
Amy Julia (34m 33s):
And in each case, although they have a disability physical and in the case of autism, there's some intellectual aspects to that. They also have a really powerful intellect And that intellect is essentially the like overcoming narrative. Yeah. And so I think back to your point of it being challenging both for writers who don't have down Syndrome and those who do, to Portray the inner world of a person with an intellectual disability. I, I mean I think that's part of, I don't think it's impossible to do, but I think it's challenging. And also we like a narrative where, well, if you have a disability, the way to overcome that is through intellectual horsepower and like this hidden talent that you have again, as opposed to really being able to enter into the fullness of a life with an intellectual disability and not quote unquote make up for that with some like hidden superpower thing going on.
Amy Julia (35m 30s):
I did find one book called A Storm of Strawberries, which has a 12 year old girl with down Syndrome as the main character. And I read it just this past week. And And I, I, I recommend it. Like, I mean I'm gonna read it with Penny. We've started it together But. It was interesting even just the number of times where we both were like, Oh my gosh, you do that. Like these little quirky things that she does that this main character does. And I'm hopeful that it will be encouraging to her to have a book where not, I mean this is by no means someone who's just like her, but at the same time to find herself mirrored in a book rather than just like looking at, which is what she typically does in books.
Amy Julia (36m 10s):
Typical kids who she sure You know in many ways is like, but also is not like, it would be nice for there to be more of those. We'll
Heather (36m 19s):
See. Yeah. I think that you are onto something here with your next books.
Amy Julia (36m 23s):
Well, we'll see, I, I have talked to Penny about actually cause I, because I really would, I've talked to her about taking photographs from things that she remembers and just writing about them. I love that. And that's where I'm gonna start is just see what happens. Like how, how much can she write about a memory? What does she do if she's You know, kind of writing more creatively, where could we go together with that? So we're gonna see. Yeah. But that kind of brings me to this other topic which I see as a through line in your work, which is the theme of Belonging. So your most recent book, Everyone Belongs. But I also think of just the, even the virtual space of The Lucky Few as like a community of Belonging, And I.
Amy Julia (37m 7s):
Just wanted to talk a little bit about the idea of Belonging. Like what is it, where have you or your kids experienced it or not? Why is it so important? Like, just talk to me for a minute about the idea of Belonging.
Heather (37m 18s):
Yeah. When we did this thing called a Strat up. So a strategic upper operation, I actually don't know what to say. And, and we met with a guy, a man who does this for huge corporations and he does some pro bono stuff for nonprofits. And you go through and do like a deep dive into everything you are, all your messaging, everything that exists and then you like create these pillars. It's a major process. But in that process, it's like we narrowed it down to what we are as The Lucky Few in our core is a place where Everyone Belongs, like that idea of Everyone Belongs is two words. Summed it up. Yeah. And it really is, maybe it's a little more profound and a complicated topic if we really wanna dig in.
Heather (38m 8s):
But I think at its core is just that human des that desire that I think we all have, which we talked about a little earlier in our conversation to walk into a space and know that as I am, I can be in that place. Yeah. That I don't have to do more, be more to be there. I just get to be there. And, I, think we all really are longing for that as people. I think we long that as ourselves, like within our own internal dialogue. Can I just just be who I am with me even? Right. Yeah. So this idea of like who you are is good and you belong here and there's not a prerequisite. You get to be here And, I'm a, as a person of faith, I think like this was, this is the story that God wrote and intended is one of everyone Belonging.
Heather (38m 57s):
So, and then like how have we not belonged? So then, or how where have we found Belonging it then it's real personal and it is a place, it is this idea of Belonging that when my kids with down Syndrome step outside our front door, they're stepping into a world that questions their Belonging in this world starting from a diagnosis in utero or app. Right? Right. Yeah. This is the narrative. And, and so I've, as I've raised them and as we've built up this, this community and this organization, there's definitely been this sense of, if I am telling the world my kids with down Syndrome belong in this place as they are, then I, it's important for me to believe that about everybody.
Heather (39m 44s):
Right. Yeah. So I mean that's kind of, that's kind of the answer I think for
Amy Julia (39m 52s):
The most part. Question have you, like I, in terms of your own family's experience, have you found real spaces, not just virtual ones where it's like, yes, this is a place of where Everyone Belongs like this is, I mean, they may be few and far between You know, we wish that that were true of our schools and churches and parks and zoos and You know, but Yeah. Have you, have you had those experiences?
Heather (40m 20s):
Definitely. And it is very far and few between. We Josh, And, I over the years have talked about it like shoulder up, shoulder down spaces. Hmm. And as a parent raising a child with a disability, you walk into most spaces and your shoulders are up. And it's like, who's saying what? Not saying what, what is she doing? What is she not doing? What is he doing? Where are they going? Who's thinking what? And this could be at a friend's house, like good friends, you could be at their house for dinner and it feels that way. So we have a handful of people in our lives who are shoulders down people that when we are with them, it's just Everyone, Belongs. Like everyone's fine. And my kids feel that my kids can sense it. I don't know if pin's like this but and August have have a supernatural sense.
Heather (41m 2s):
Talk about a superpower. It's amazing to, It's unreal to read a room and a person without anyone saying a word. It's just unbelievable. So we talked about it earlier, Hope Heals Camp this year was our first experience at Hope Heals. And we were trying Josh And I were like talking through afterwards. And the thing that was missing in that place was ego. Nobody had an ego. I've never been in with that many people with it like that. That especially in a place where there are like more like famous people in room You know. Yes. There's no ego. And we're all just, I think that we've been in that invitation of seeing the humanity in all people.
Heather (41m 49s):
Everybody there has someone in their life that has been with the dis has a disabled personal life that's been that invitation for them. Yeah. And then we're all together. That was a really, really good safe place where we've felt that. But that's it.
Amy Julia (42m 6s):
No, I mean that is certainly a place I return to when I think about the fullness of an experience of Belonging. I, when we were at Hope Heels this summer, I was talking with William, our son who is 14, and I said to him, You know, can you imagine a place that would be like a happier place for Penny? I said something along those lines. And he is like, Well heaven, Heaven is the only place I can imagine that would be better You know. Like in terms of just that sense of like that deep piece of of yeah. Of everyone Belonging here. And it's, it's a really incredible thing to get to experience.
Amy Julia (42m 46s):
And that's true. I know from having now been there a couple of years in a row, that is true for the people who are have Disabilities and who are in families with people You know all. But also for anyone who's there kind of quote unquote from the outside, there's also just a sense of like, Oh my gosh, I belong here too. This is amazing. You know. It's
Heather (43m 6s):
Really, Yeah, it's really beautiful. And I in my children's book, Everyone Belongs, the girls say that it's put on by two sisters. Yeah. Macy and True put on a show. And the girls say numerous times, Exactly who you are is exactly who we pick And. That is Belonging. Yeah. That that is one of the key ingredients to creating Belonging, And, I think it's foundational. It's not. It's not. You're not gonna get there on a checklist. It is something has to be transformed in you. It, for me, it was my experience stepping into the role as a mother to a disabled child that transformed me. It did things in me that needed to be undone and in ways of thinking and believing, in being in the world You know.
Heather (43m 52s):
So then as that's unraveling in me, then I can say, Oh exactly who you are is exactly who we pick. You belong here. Right As you are who you are, come be in this place with us.
Amy Julia (44m 4s):
One of the, there's a passage from the Psalms that I've heard throughout my life. But, it's for whatever reason been really on my heart this past year. It's a very, for people who know the Psalms, it's a familiar one. It's, I think it's Psalm 1 39. And David writes, I praise you God because I am fearfully and wonderfully made. I know that full well And that has just come back to me because I think I only ever paid attention to that idea that we're fearfully and wonderfully made, which is beautiful. That idea that we are You know each of us. But then I noticed that it was David saying, I praise you. So like, first of all, I'm the one who's like acknowledging my own the wonder of my own creation.
Amy Julia (44m 51s):
And then he says, I know that full well. And I've just been wanting that for my kids and for myself. That sense of like, I deeply know that place of Belonging with God. I mean, back to the belovedness, the idea of delight that can come from when we actually see each other for who we are and who we've been created to be. And all of that I think is really integral to what you were talking about before in terms of just like a lot of miserable people. Whether that is the divisions we have in between us or the divisions we have within us, Right? Like that sense of just like, Oh, I'm not okay on the inside and it's not okay on the outside, but just I've thought a lot about belovedness and Belonging being the center of healing like that.
Amy Julia (45m 41s):
That is when healing we're kind of opened up for healing to happen is when we have both a sense of our belovedness and of our Belonging. And so I really believe that the work you're doing is important specifically for people with down Syndrome for their families, for all the reasons we've noted. But there's also this broader work of understanding really belovedness and Belonging that I think can lead to a healing that goes beyond one particular community. So I'm just really grateful Yeah, yeah. For the work that you do and the way that you do it.
Heather (46m 17s):
Thanks. Thanks for saying that. And I agree. And that can even like, let's tie it back to the question you asked, like why is it important for someone to know someone with down Syndrome You know like, this is why, Yeah. This is, this is gonna, Yeah. It's gonna, it's this opportunity. It's just the invitation is there for all of us to have a fuller understanding of that belovedness and to feel a sense of Belonging. It's there. It's there for everybody. It's just an A matter of accepting it or not. You know. Yeah. And it's way harder to do than easier said than done, right?
Amy Julia (46m 57s):
Yes. But You know, having someone with down Syndrome in your life somehow seems to also make that an easier Yeah.
Heather (47m 7s):
Amy Julia (47m 7s):
Easier thing to do.
Heather (47m 9s):
Amy Julia (47m 11s):
Well, Heather, thank you so much for your time and your contributions, not just on this podcast, but on your own podcast and in all these different ways, we will make sure that people have opportunities to follow up and learn more and know about your books and your other work. And happy down Syndrome Awareness Month.
Heather (47m 29s):
Thank you. Thanks for having me on here and for the conversation and for all that you're doing. Amy Julia. So good.
Amy Julia (47m 36s):
Thank you. Thanks as always for listening to this episode of Love is Stronger Than Fear. I am gonna remind you again that this week I'm partnering with Heather and other moms of kids with Down Syndrome over on Instagram. And starting on Wednesday, October 5th, we're going to be giving away our favorite picture books and memoirs in celebration of Down Syndrome Awareness month. So you can find all the details on Wednesdays Instagram Post at Amy Julia Becker. Please also check the show notes for lots of links where you can find more from Heather. And we rely on word of mouth around here.
Amy Julia (48m 16s):
So please let other people know if you enjoyed this episode and leave a rating or a review wherever you get your podcasts. Thank you Jake Hanson, for your editing skills and for stepping it up a notch. He just introduced us to a new platform. We're grateful for that. Thank you Amber Beery, my social media coordinator who makes so many things happen. So grateful for you Amber. Thank you. And finally, as you the listener, go into your day today, I hope you will carry the peace that comes from believing that love is stronger than fear.