Title:
The Book Every Disabled Child Deserves: Angelea Yoder on Let Them Stare
Subtitle:
A powerful conversation about VACTERL, visibility, photography, and why disabled children deserve to see real kids like them in books, schools, hospitals, and beyond
Transcript:
Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week, we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths, let’s go.
Hey, everybody. Welcome back to Pushing Forward with Alycia. Today is so fun because I have my soul sister, Angelea Yoder.
This is her second visit to the podcast, so welcome back. Y’all, she is a photographer to the stars and musicians. Big names, Reese Witherspoon, Kane Brown, the list go on and on. So she’s big time, number one. But she’s also a storyteller, a speaker, a disability advocate, an author and she is the creative force behind Let Them Stare.
It’s a powerful photography project that is changing the way the world sees disability and differences. She was born with VACTERL. and has had more than 20 surgeries throughout her life. She and I have connected on so many ways, through advocacy, through speaking, but honestly
We have found so many commonalities in our stories. We were actually just going through it again before we started recording. We can compare notes about our disabilities and the differences in our body and I’m pretty sure, though I haven’t been diagnosed with it, that I am in the VACTERL family as well.
And today we are here to talk about all of everything she’s doing, but especially this beautiful children’s book that she has just authored called Look at Me: Look What I Can Do. It is now in a Kickstarter program. This book celebrates disabled kids, their joy, their strength, their confidence. I think it’s kids with disabilities and differences, honestly.
And all of the amazing things that they can do in their beautiful bodies. And this is part of the Let Them Stare project and the amazing impact that she’s making from a representation and education standpoint in this beautiful movement that we are in together. And I am so excited to have you back on the show, my sweet soul sister, and to lift up this project and get people involved. Welcome to the show.
Thank you. I’m so excited to be here, and it’s so good to see you too.So good to see you too. And I know you’re on a major media tour right now, so taking time to be on the pod is, I appreciate it.
Angelea Yoder: Oh gosh, no, I will always make time for you, Alycia.
Alycia Anderson: I love you. Let’s start with a little backstory of who you are and what is lighting you up right now in your career?
Angelea Yoder: So my name is Angelea. I’m a photographer, disability advocate, and storyteller based in Nashville, like Alycia said. But I moved here about 14 years ago. I worked in country radio after college, and, wanted to work in the music space, so I just up and left Wisconsin where I grew up and moved down here and without a job or friends or didn’t know anybody, and I just up and moved. Yeah, worked my way through multiple jobs and stuff to photography my full-time career. So I’m super grateful to have the opportunities that I’ve had, but now I’m shifting my career into a more purposeful career. Instead of, just doing music or just doing fashion, which I completely love, I want to start doing something that can help people and change the world. So I was born with something called VACTERL Association, and each letter of that acronym stands for an anomaly of the body. And a lot of them are invisible, so you can’t see them to the physical eye. But I’ve struggled so much with those just because you have to carry it mostly alone. instead of hiding those now, two years ago, I started telling that story and it’s become so liberating and it’s helped others and it’s launched myself into this project called the Let Them Stare project, and the first phase is a children’s book.
Alycia Anderson: So I love that. I wanna talk about the children’s book, but I wanna just pause there for a minute. And you have grown so much and become so brave since the first time you and I met. Not that you weren’t there, but when we first met, we started talking about the VACTERL thing, and the conversation between both of us was like, “Oh, my God, that’s part of your body?
That’s part of mine. Oh, my God, I can’t believe that we have that in common. That is… Wow.” And we both kinda connected the dots and we go, “Should we talk about this on the podcast?” And you weren’t there. I definitely wasn’t there. And then literally a couple weeks later, you’re on NBC or some big national show and campaigning.
You’re talking about it. And I want you to talk about going from hidden to heard, hidden to seen, and what that liberation is. Because I think a lot of us with differences in disability whether it’s visible or not, we’re constantly trying to hide things, which is okay, but it is pretty liberating to just stop and allow yourself to be who you are fully.
Can you talk about that moment? ‘Cause I think it would help a lot of our community.
Angelea Yoder: Yes, absolutely. So after we talked, yes, I went on Good Morning America to talk about the project and a little bit about my story. And two years ago, I had not told anybody about the complexities of VACTERL. I’ve talked about scoliosis, I’ve talked about, having one kidney and a little bit of a limb difference, but never talked about the anorectal malformation or the urinary differences that are in VACTERL.
When that Good Morning America segment aired, or they told me, “Hey, this is going live in a half an hour,” I actually had a panic attack right before it aired because my mind went back to elementary school, middle school, high school, college, and all of the comments and the jokes and all the feelings that came with being made fun of or feeling like belong or embarrassment and humility. All those feelings came back and I thought that was going to be what the world saw again is, ew, gross or this girl’s got so much just gross stuff going on, but it wasn’t. It was overflow of positivity and acceptance. And so from a panic attack, it actually went to a lot of crying but positive crying of oh my gosh people actually accept this they love it and they love me for who I am.
So it was truly…
Alycia Anderson: I love you
Angelea Yoder: liberating.
Alycia Anderson: Talk about what VACTERL is a little bit for those. And your Good Morning America, interview really explains all of this so well, so everybody go check out Angelea’s website and social media to really learn about her story. And we’re gonna leave all the links in the show notes.
But will you give just a little bit of rundown of what it is? Because the hiding is a place that I’ve been into my whole life, for sure. And when you say things like, “Oh, people are gonna think I’m gross,” or, “They’re gonna think this is weird,” or, “This is like way too out of the box,” I dealt and deal with all of those things myself.
And so can you just paint a little picture of what it is to explain that piece.
Angelea Yoder: Yes. VACTERL, also known as VATER syndrome or VADER syndrome, people interchange the sayings. VACTERL, I’m gonna go through the acronym. So V is vertebrae, A anorectal, C is cardiac, T is tracheal, E is esophageal, R is renal, and L is limb. And they did recently add a G to that for gynecological differences. But all of those, letters stand for different organs and anomalies. So a person, to be diagnosed with VACTERL, you have to have three or more anomalies that, fall into those categories. And so VACTERL can look different on every single person, and I think that’s why it’s not difficult, but it’s not known.
VACTERL hasn’t been known super long or it’s super rare. So V, my story, V, I was born with severe scoliosis and a tethered cord. I have an anorectal malformation or anal atresia, which means you were born without an opening, so I wasn’t able to relieve myself like a normal person would. I had a colostomy bag when I was young and then rectal enemas, and now I do a bowel management called the balloon, and it’s given me so much independence.
It’s still not fun, it’s a lot of stuff behind the scenes and a lot of just keep up, but that’s probably the most vulnerable ever to anyone, and it’s not accepted by society because, yeah it’s bathroom related. But that was probably the biggest liberation of them all. I’m getting off track, sorry. so C, cardiac, I don’t have anything heart related or T or E.For R, I have one kidney, then urinary-wise, don’t have any muscles at all down there or it’s a neurogenic bladder, so there’s no motility or continent. So growing up, I just had accidents all the time multiple a day.
Had to change clothes constantly, leave school. And then now as an adult, just a couple of years ago, I discovered Botox injections and that’s helped so much. It changed my life, and I haven’t had an accident in, like two years. So that has changed forever, and I’m sure other people have experienced incontinence, just, as you grow older and stuff.
And it’s embarrassing. It’s humiliating. I think everyone can maybe relate to that on some level. And then, limb difference, my foot just has a little bit of an arch because of the scoliosis and stuff. And so I had foot surgery when I was in high school. And then G, I just discovered two years ago that I had a didelphys uterus.
Basically two uteruses a wall in between. And yeah, that’s my VACTERL story
Alycia Anderson: And my VACTERL story is exactly the same as yours. And it’s absolutely unbelievable. When we met, and you said to me, “I think I wanna talk about the anal rectal piece of it, but I don’t know. I’m scared.” And I was like, “Oh my God, I was born like that, too.” And you said something like, “Should we talk about it?”
And I was like, ” No.”
Angelea Yoder: I remember.
Alycia Anderson: And that’s the first time that I’ve said that, this out loud as well. We have exactly the same of the acronym VACTERL the way it shows up. The G, the female, the one kidney, the anal rectal, the scoliosis, the what am I missing? Everything that you just said I have, too, and I’ve never ever in my entire life met anybody that I can relate to that in my entire life.
It is… Like, when I was just in the hospital with my bowel obstruction, you were the only one that actually knew what I was going through. It, so it’s… I’m so proud of you for that piece of education that you’re putting out and normalizing it because me watching you be so brave to go from, “No, we’re not talking about that,” to ripping the Band-Aid off on Good Morning America and then two years later it’s just been a major part of your platform.
It’s been such important advocacy. You’ve really helped me become one with my disability as well. And so I’m grateful for you for that. Like, when you’re not alone, you’re like, “Oh if she can do it, then I can, too, maybe.” So-
Angelea Yoder: It makes a difference. And I’m proud of you because I know you have not… This is the first time you’ve said that.
How does it feel?
Alycia Anderson: You know what? It feels like I feel safe with you. I never had the diagnosis of VACTERL. My parents whispered to me or my dad, “You were born without an anus.” There had to be reconstruction done. Like I’ve had reconstruction on my bladder. I dealt with a lot of accidents, urinary tract before my bladder was reconstructed, and all the things that I had to go through.
And that stuff is embarrassing when you’re young. And especially with the anal rectal piece it’s really hard. It’s embarrassing, and there’s a lot of maintenance and management that has to go along with it, like you’re saying. And that causes a lot of extra work and stress and navigation when you’re just trying to get through life, go to school, have a job do all the things.
I’m really proud of the advocacy that you’re doing and that you’re really leaning into it. And it’s, I’m sure, helping a lot of people. It’s definitely has helped me, for sure.
Angelea Yoder: You’ve helped me…
Alycia Anderson: Yeah.
Angelea Yoder: too. I just wanted to say that just because it’s VACTERL does have a really high rate of suicide, and it’s really sad, but it’s, it people carry these things, and it’s really hard. So it’s just love finding people who don’t let any of this stop who they are in helping others.
And I think when I met you, it was like, “Oh, there is somebody out there who is trying to change the world as well, and maybe they still don’t tell others about everything, but they’re still trying their best.” And I know exactly what you’re doing behind the scenes, and it’s hard.
Alycia Anderson: Yeah.
Angelea Yoder: But yeah.
Alycia Anderson: I love it, thank you. And it’s just been a really cool experience and very personal to have a friend like you. We just had a moment before we got on where you were talking about the two uterus and the wall, and it was the same thing the last time. “Oh, I have that too.”
We’re constantly like, “Oh, wait, I have that too.” I don’t have any other friends that that I can say and relate to that. I just don’t. I love it. Anyway, very important advocacy, and I’m very proud of you. Lead, sister. Lead. Okay. So I know your journey in this was a lot of the motivation for the Let Them Stare project, and specifically the first piece of the project.
And I want you to explain it ’cause I don’t wanna misarticulate it. But the Look at Me, Look What I Can Do, talk about what that piece of the project is, what you’ve been working on, and where you’re at with it, and and all the things.
Angelea Yoder: Look At Me, Look What I Can Do is the first phase of Let Them Stare. It is a children’s book, and it focuses on showcasing ability with disability with kids and teens. So my friend Laura and I met for coffee few years ago, and, we were talking about this idea, and I wanted to do something with Let Them Stare, and she’s “You should make a children’s book.” And I was like, “Oh, I was gonna actually write an autobiography, and it just … I wasn’t there yet ’cause I wasn’t ready to tell my story. And she said, you should use photography. Use your gift of photography to tell these kids’ stories or…” And so I had the idea of, not just focusing on Nashville, but traveling all over the country to photograph all these kids with disabilities, but disabilities that are not represented in society as much as others because, no child should ever feel like they’re alone, and they should see themselves represented in mediums of- everywhere.
Start of Embedded Episode Advertisement
Alycia Anderson: I wanna tell you about my friend, Nashville photographer Angelea Yoder, and her beautiful new children’s book, Look at Me, Look What I Can Do. This isn’t just a photo book, it is a chance to shift perspectives.
By celebrating children and teens with visible and invisible differences, Angelea is helping the world see possibility instead of limitation, and ability instead of assumption. Join me in helping Angelea bring this beautiful project into the world. Support her Kickstarter today at letthemstare.org.
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Angelea Yoder: So over the last few years, traveled across the country photographing these kids, but instead of just focusing on their disability, it’s focusing on what they like to do and what they can do to show other kids that they’re so much more than what the doctors tell them or what their diagnosis is. So whether it’s just a smile, they can smile really bright, or they’re a really good sister or brother, or of course, they like music, riding their bike, that shows that they’re just so much more. And I think disability is taught best when you can actually see it, and most children’s books focusing on disability are cartoons. And I think just from my experience, it was so much better as a kid when I was able to see in real life or real people, and I think that builds more compassion and perspective as well. I’m hoping that some kid in a waiting room thinking that they’re alone in their journey will open up this book and instantly have community or feel like, “Oh, I’m not the only kid out there that has a similar journey to mine.” And then, at bedtimes for other kids who are fully able-bodied to learn about disability and to give these teachers and tools to teach them about real-life kids, but not in a negative way, in a positive way, and that they can do anything. So that book is coming out in July, next month.
Alycia Anderson: Congratulations. And let’s talk about the Kickstarter.
Angelea Yoder: Yes. I’ve launched a Kickstarter about a couple weeks ago, and I’m raising $40,000, and that’s just to print it. So people ask me, “Why is it so expensive?” it’s expensive because first of all, I’m self-publishing this book. I wanted the creative direction to be able to give these kids the authenticity and the creative care that they deserve. Because as we all know, it’s scary to tell a story that’s so vulnerable and… all these kids wanted to help children and others in the world, and that was, like, really important to me that they had a choice to participate or not, because a lot of kids with medical complexities don’t get a choice on what happens to them, especially in a medical setting.
So that was important to me that this was their choice. Where am I going with this? Hold on.
Alycia Anderson: You know what, though? Before you even go. I love that you mentioned that, and have we talked… I think we talked about this last time,
Angelea Yoder: Did we?
Alycia Anderson: About the social media culture and this might sound a little judgy, but there’s a lot of parents out there that are trying to educate the world on their social media about their kids with disabilities.
Alycia Anderson: And I think to a certain extent that is really valuable. But there are moments that I see it go too far. A child that is too young, or you can obviously tell they’re non-verbal, and there’s things that are going on, and it’s gotten to the point of changing diapers or very intimate moments.
And for me I love that you say they have the choice to participate or not because if that was me at X, Y, and Z age and my mom was blasting anything that was very personal and hygienic. Even if it was showing my legs and I wasn’t ready to do that yet or something, I’d absolutely think that it is extremely important that children with disabilities have the choice to blast themselves or not.
Because once it happens, that is on the internet forever. And I assume that I probably would get a little pushback from this from certain people that are doing this. But I do feel like it’s my responsibility to speak up for the ones that can’t and go, that is the last thing that I would ever want, ever, without deciding that I’m signing on the dotted line and going, blast away.
And I think that parents and leaders out there need to be really cognizant of that and what the future looks like for that young disabled child that is now in high school, trying to make friends, and there is stuff on the internet that is humiliating potentially to them.
100%. I agree. 100%, and I am all for advocating for your child, all 100%. And especially those differences that are not represented, because how else are you going to show the world what these differences are? But same. If my parents pictures of what I had to go through when I was a kid because a lot of it was behind the scenes and very invasive. I don’t know if I would’ve loved that. Now yeah I agree wholeheartedly that, it needs to be the child’s choice if able. I know that there’s some specific situations, but yeah, I think just being cognizant and having perspective of if this was you in their shoes, would you want this on the internet? I think you should ask yourself that. And especially in like hospital settings, even if someone else is in the hospital and you’re just there. When you’re not disabled. We don’t feel the greatest in the hospital, so do we want our picture taken, and posted? Or maybe we should just type that, “Hey, she’s in the hospital. Please send prayers or please send thoughts.” ” So, maybe I shouldn’t post a picture, but maybe I should just type it. Yeah, anyway, I love it that you’re creating this path of self-advocacy for the kids, and I love it that you’re creating a space that the kids that you worked with can take ownership of that of themselves and show off what they choose and what they like, and probably hide what they don’t still, and I think that’s a beautiful thing.
You’re not only creating a book that’s gonna help them feel in community, you’re creating a book that is gonna allow other children to see diverse abilities way further than, like you’re saying, the typical, kid in the wheelchair that’s rolling around campus. But you’re also creating an avenue for the bravery and self-advocacy in the students, and the children that you’re working with, which is really amazing.
I wasn’t there when I was younger, I think it’s such a huge cultural shift book that you’ve created to really expand the, disability and differences in ability culture. Huge. Huge.
Angelea Yoder: I’m excited. I’m nervous, but it’s in my heart that this book needs to be into the world, and I just keep thinking of the child. Even if it changes one child’s perspective of, “Oh, I’m not alone anymore,” then this whole thing was worth it.
Alycia Anderson: It’s gonna change a lot of children’s perspectives, and it’s gonna change the world’s perspective. You’re such a talented photographer. I agree that this is the perfect avenue for you to be telling your story and having your advocacy shine bright because you’re such an artist in your photography alone.
So the fact that you’re leaning into that in this way is so beautiful. It’s lovely. It’s wonderful. So the Kickstarter’s really important. We’re on a timeline, and you are over halfway to your goal, but we want to and need to get the support from our community and any corporate sponsors that are out there listening to this.
Like, how do we help you meet this goal to get this book into the world and make a huge difference?
Angelea Yoder: My Kickstarter goes until July 4th going out with a bang.
Alycia Anderson: Good. I like it.
Angelea Yoder: But yes, my Kickstarter has several different tiers and, support can go from small to large. It all means so much. So there’s tiers on there where if you wanna be like, “Hey, I support you. Here’s $10.” You can donate as much as you want or as little as you want. It all means so much, and it has so much impact. There’s tiers on there where you could pre-order the book, do a signed book, or, buy one and give one away for a gift.
But then there’s also tiers where you can donate books, so to schools hospitals, organizations. Just places that might need them, even a library. And then there’s also tiers where I could come to your school or come to your organization and talk to your kids or even your adults, about disability or a little bit about VACTERL or story.
So I think there’s a little bit for everyone, but I’m just so appreciative of the support that I’ve received so far. It’s overwhelming. It’s stressful. It’s eye-opening, but it’s been the best experience. So yes, I would love for everyone to support me these last couple weeks, and we’re gonna get to 40,000
Alycia Anderson: Definitely getting to 40,000 and beyond. And I’m so proud of how brave you are in just leaning into all this stuff. It’s been so inspiring for me to watch from the sidelines, and I’m cheering you on every single step of the way. Can we talk about what’s next for Let Them Stare after this?
Angelea Yoder: Yes. So after the children’s book, I’m still going to focus on the children’s book, but hopefully doing it in the community. So bringing it to schools, bringing it to organizations, and talking to kids at schools about differences and how to treat others with respect, but at the same time, I’m starting on my adult coffee table book, which is called Let Them Stare.
Alycia Anderson: It’s very similar to the children’s book, but instead of children and teens, it’s focusing on adults in the United States who are … Actually, not even the United States. I could go worldly with this one. You could.
Angelea Yoder: Yeah, I could. Yeah, let’s not put limitations on that one. So yeah, just adults who are thriving with their disabilities or their differences and not letting it stop them.
Alycia Anderson: And, you don’t even have to be, an influencer or somebody it’s so much quieter than that. It’s just, you’re a mom, you’re a sister, you’re a musician. Something that has taken a lot of work for you behind the scenes, but you’re just doing an amazing job. And it’s like the Humans of New York style, if that makes sense. So instead of 27 kids though, I think it’s gonna be 100. 100 different adults around the country or around the world who are showcasing their disability, but also it’s going to be their choice as well. Ooh, I like the going around the world.
Angelea Yoder: That would be so amazing.
Now we’re in a brainstorming session
Alycia Anderson: Yeah. That would be so cool to see, like all kinds of disabilities and differences and culturally around the world. Whoa, that would be deep. Did we miss anything?
Angelea Yoder: So simultaneously, while I’m doing the adult table book, I would love to start a modeling agency in Nashville or the Southeast. But it represents adults with disabilities, and I think that will bridge the gap between fashion and disability.
And as a fashion photographer, that’s really important to me just because I would love to see disfigurement and disabilities in so many more media campaigns and PR campaigns. And I think to be able to have the Let Them Stare modeling agency, it would be a perfect hub for people to come and get representation in their campaigns.
Alycia Anderson: Love it. Dreamy.
Angelea Yoder: Yes, we’re gonna, we’re gonna go big. And then hopefully it could be a freestanding building or something and, people with disabilities or difference, or it’s not even at all. They could come and co-work and meet other people and learn about nutrition or mental health and just be a whole and all-in-one hub.
Alycia Anderson: Congratulations on all the success you’ve had in the last couple years, like taking the leap, starting your full-time entrepreneur journey, becoming such a, beautiful, bright light in the movement that is so sweet and calm and bright and authentic. I think you bring a lot to the advocacy and the movement, and I just really appreciate everything that you’re doing.
You’re scratching the surface on where this is gonna go. I cannot wait to see. I’m so excited for you. And I’m here to support it. Here to support it all the way.
Angelea Yoder: Thank you.
Alycia Anderson: Okay, how do we find your Kickstarter? We are gonna leave everything in the show notes to go click, easy, donate. Any bit of donation is worth its weight in gold.
Please, community, go right now. Go click on the link right now and donate to this project. You are gonna be a significant piece of a beautiful movement that is just about to launch. So get involved. Tell us how to find it.
Angelea Yoder: If you go to either my website or the book’s website. So probably the easiest would be letthemstare.org, and there is a huge banner that says, “Back the book, support the Kickstarter,” and that will lead to the Kickstarter page, and then you will see all the reward tiers.
Alycia Anderson: Awesome. Okay. Again, all those links are gonna be in the show notes. I’m so proud of you. Congratulations on getting here. We’re in this together.
Angelea Yoder: Yes, we are.
Alycia Anderson: We’re in this All right. Thank you so much for coming back to the show. It was so good to connect again.
And thank you to our community for listening. Please, if you are gonna re-share any other episode, please share this one so we can get Angelea across the board on the Kickstarter and really support this beautiful project. Look at Me: Look What I Can Do is coming very soon.
Angelea Yoder: Thanks, Alycia.
Alycia Anderson: Congratulations.
Angelea Yoder: It means the world.
Alycia Anderson: You’re welcome. Oh, wait. Pushing Forward moment. I forgot the Pushing Forward moment.
Angelea Yoder: Oh, OK.
Alycia Anderson: Little mantra, a little something that you live by, some motivational something to give away to our community
Angelea Yoder: Can it be as simple as let them stare?
Alycia Anderson: Yes, it can be… Yes, let them stare, absolutely!
Angelea Yoder: Yep. Okay, great.
Alycia Anderson: Perfect Pushing Forward moment. Let them stare. All right, we’ll see you next week. Thank you, everybody. This has been Pushing Forward with Alycia and Angelea, and that is how we roll on this podcast. We will see you next week.