Finding Joy In Your Journey Growing Up With A Cleft Or Facial Difference MyFace, MyStory podcast

On this month’s myFace, myStory podcast, host Dina Zuckerberg is joined by Jeremy and Henry Shipp. Jeremy is a writer for the Disney Junior cartoon, Firebuds. His son, Henry, was born with a cleft lip and palate and was the inspiration - and the voice - for the car character Castor on the Clefthood episode. Jeremy and Henry will talk about their journey and why positive representation in the media matters. - [Narrator] Welcome to myFace, myStory. Voices from the Craniofacial community, with your host, Dina Zuckerberg. - Hello and welcome to myFace, myStory, voices from the Craniofacial Community. Whether you're watching on YouTube or listening on Apple podcasts, click subscribe now so that you'll never miss a future episode. And if you're a fan of myFace, myStory, rate and review the program on Apple podcasts so we can get a message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. myFace, myStory is about people like us being seen and heard. About sharing stories within the craniofacial community and with others. Today I will be joined by Jeremy and Henry Shipp. Jeremy is a writer on Disney branded television's animated series Firebuds, about a team of young kids who are the children of first responders, and their talking vehicle sidekicks, as they embark on adventures together, and learn what it truly means to be a hero. Previously Shipp was part of the Emmy Award-winning writing team on Disney channels for Rapunzel's Tangled Adventure, with over a decade of experience as a writer for animation. His additional credits include Teenage Mutant Ninja Turtles, the Family Tools, and Dino Trucks. Shipp began his career as a production assistant at Dreamworks, while working his way up to pursue his passion for writing. Born and raised in rural upstate New York, Shipp currently lives in Burbank, California with his wife and two children. He is a graduate of Syracuse University where he majored in Visual and Performing Arts. Henry is delighted to be making his television premiere, on Disney's Firebuds. This role is especially important to him because like his character Castor, Henry was born with a cleft. It is so rare for characters to have facial differences and is a privilege to be a part of representing the cleft community. At a young age, Henry expressed a desire to advocate for cleft affected kids. Since he was seven years old, he has been baking cookies and selling them to raise money for Smile Train. Through this project, he has not only made donations to a special organization, but he has also raised awareness of cleft throughout his community. Henry is very active at his school. As vice president of his elementary school, he successfully advocated to the school board to get updated playground equipment that benefits students of all ages and abilities. He loves to sing in the school's annual musical review, play the drums in the band and help raise and lower the flag every week. Most of all though he loves playing with his friends, his little sister, Izzy and his tiny dog Wilbur. Welcome Jeremy and Henry. I really look forward to our conversation. - Thank you for having us. - Yes, so Jeremy, can you share with us what it was like for you when you found out that your son would be born with a cleft lip and palate? Take us back to that day. - I remember distinctly, because I was filming a video at the time. I was filming my wife's sonogram and the doctor seemed unusually muted in his energy and he calmly waited until we stopped filming, and then he said, you know, I've got something to tell you. Your son will be born with a cleft lip and palate. I can see it. And I didn't really know what that was. All I could understand was that my son wasn't going to be born the way I thought he was going to be born the way he, you know, the way I thought he would look. So I was really thrown for a loop, and my wife and I walked from that session kind of in a daze. And I remember calling my mother who was a nurse, so she kind of walked me through it. I was, I didn't really understand what, what we were, what to expect. - Right. - Then once I understood, you know, I resolved, you know, to myself that, you know, no matter what we were going to give him the best life, he would be, you know, he would come out just fine. I remember being kind of determined that would be the case, but I had a lot of mixed feelings. That was a, that was an interesting time for me. - Right. Yeah, it, it sounds very familiar. Except when I was born they, my parents didn't even know I was gonna be born with a cleft lip. And my father, I remember my father saying to me that when they found out like, she's gonna be just fine and everything's gonna work out, and she's gonna be able to do what she wants, and all of that. - Yeah. - It sounds great. - Yep, that's right. - So can you explain what a cleft lip palate is, for those that may not know? - Sure. When the, the face develops in utero, the skin kind of forms over the, the top of the teeth on the upper lip. And in Henry's case, and in many others, the, the skin just kind of stops, doesn't make that full connection. And very often that is combined with a cleft in the palate, so the roof of the mouth. And so Henry has what's called a fistula. It's got the space and the roof of his mouth goes up to his nasal cavity. And, you know, surgery has intervened and repaired much of that. He looks fantastic, but it's still, you know, it brought with it its own challenges, its own, you know, there was a, there was a hearing issue that needed to be attended to when he was, when he was young, and required speech therapy and he put in a lot of work, and he's doing well. But he was, so he's born with a, a bilateral cleft palate, a unilateral on the lip. - Okay. Okay, and Henry, how many surgeries have you had? - Four, I think. - Four. - Okay. So Jeremy, can you give us a brief synopsis of Firebuds and specifically Cleft Hood, without I guess giving too much away? - Sure. Firebuds is a Disney Junior show and it's about the kids of first responders and their first responder vehicles. And they live with their vehicles. They play with their vehicles, they live in the same house. So the main character is a young boy named Bo, who wants to be a firefighter, and he gets to live with his best friend, his roommate. - Uh huh - Flash, who happens to be a firetruck. So it's a lot of wish fulfillment. A young boy gets to hang out with his firetruck and he's friends with a young EMT on the make, and her ambulance, and a young police officer and his police car. So they go out on adventures, and they perform a rescue every episode. Cleft Hood is an episode that I pitched early on in the first season of the show. Where I suggested what if there was a car that was born with a cleft so we could have in our show the analogy of a real life cleft experience. And the creator of the show is Craig Gerber and he is responsible for Sophia the first, and Elena Avalor. He instantly cottoned to the idea, he said absolutely, I wanna do that. So briefly, the show is about a young car named Castor. Who has a cleft and he is due for a a repair surgery and it happens to be on the same day as a carnival that he really wants to go to. - Right. - So he ends up trying to go to the carnival despite the fact that he has this surgery that he needs. And this really confuses one of our main characters, Axl, the kid Ambulance. So she's trying to discern why young Caster is avoiding the surgery that he needs, to attend this carnival. - Yeah, I actually got to watch it. I loved it. It was great. So Henry, what was it like for you to audition for the role of Caster on the show and were you nervous? I know I would be. - I was terrified. Maybe one of the scariest moments of my life and they took me to a dark room with a bunch of people on Zoom and they were all talking and I couldn't hear them, so I had no idea if they liked what I was saying or not. - Uh huh. - But most of the time I was pretty sure that they did like what I was saying, but I wasn't a hundred percent sure. And that was what was really scary. - So he's describing the record, our audition, we did in the safety of our home on the laptop, and I sent that in and he got the part. The record itself, which, you know, we could circle back to if you want. But yes, it was an, a strange experience. It's at the height of the Covid Pandemic. - Right. - And there was all, it was Zoom, so there was, weren't many people in person, and they would frequently mute themselves so they could discuss notes. So it was very kind of strange experience. - Right. - I think for young Henry. - And Henry, did you have any acting experience before you even tried out for the part? - Not really. I mean, I've been in like short skits, but not really. This was my first ever acting thing. - That's great. Must have been exciting when you found out you got the part. - Yeah, I was dumbfounded. I really didn't think I would get it. - Love it. - Yeah, we were very taken by the, the news that he would play the part. - That's great. So in TV and movies it's often the villain who has facial differences, who has scars, and why is it important for our children, and even adults to see positive images on screen of those from the facial difference disability community. - Because so many children have scars and have facial difference. And I want them to see on their favorite movies and shows, other characters and kids that look like them who aren't villainous. And you said it, exactly. There are so many villains in, in media who have scars and that's supposed to represent their, I guess you could say, ugliness on the outside, which is unfair because I don't think scars are ugly. - Right. - And I want to see more positive portrayals of, of characters with facial difference so that kids can be inspired and, you know, we're all in this together. That's really what I want. I want kids to take away from this and try to change that, that narrative. - Yeah. So has Cleft Hood helped, do you think Cleft Hood has helped to open up a wider conversation about representation of people with facial differences in the media? And if so, do you foresee any changes in the near future in your mind? - I can say that it has certainly inspired conversations. The response to the episode has been rather overwhelming. It took me off guard as to how large the response has been. I met you Dina, at Cleft Con. - Right. - We were invited by Smile Train to talk there. I was invited to write an editorial for Huffington Post and some other outlets speaking about this very thing, about facial difference representation, villainy and so forth. And so, yes, I really do believe it has inspired conversation. Certainly within Disney I've received some accolades and appreciation from the executives, and I think they are keen to continue that trend. As to whether it will reflect a grand difference across future shows and movies, I can't say for sure. I know that I'm, I am continuing to work on Firebuds and other shows and that is still a priority of mine to keep that, keep that moving. - And will we see more of Castor in the future episodes? - That is something we are not allowed to talk about, talk about any future episodes that haven't yet been announced, but that would, would be lovely. - Yes. So Henry, what message do you hope children and parents take away from the Cleft Hood episode? - Well, I've really, really, really, really, really, really, really want, the kids who watch this to like well. I've read some stories about some people who have been bullied because of their facial differences and I want like little kids to know that it's a normal thing and like they'll grow up knowing that it's a normal thing and they won't be mean to other people who have clefts. - Right. - And other facial differences. - Yeah, what I love about this, 'cause I, I'm a big believer of when you get kids at such a young age, they're still, they're like sponges. And when they, when they don't understand something, it's when they get kind of scared or uncertain. But when you just say, oh, I was born with a cleft lip and I have a scar or I, it sort of becomes no big deal to them. It's like, oh, okay. That's just a part. And so I love getting kids when they're younger because I feel like they, they stand a better chance as they get older because they've been, it's just a matter of just exposing them almost to those differences. - One of the things that I really liked about what you just said, Dina was normalizing facial difference. - Right. - And that has been a priority in our household. My wife Elizabeth, in working on raising Henry, we started at an early age. We were encouraged to normalize discussion of his cleft, to not make it a foreboden topic. It's something that is normal, it just happened. No one's responsible for it. It's just something that happens in life. - Right, right. - And I've been proud to see that that has really, you know, I hear him talk about it with his peers and his friends at school and he's totally cool. Oh, it's my cleft. And when, very often when, when it's brought up in that kind of matter of fact way, kids don't really have any other signals to say that it's bizarre, so they say, oh, cool. - Yeah, right. - And they move on and that's, that's what I want. - Yeah. I agree. So who is Anya and how did Anya make it into the episode? - Do you wanna talk about Anya? - Anya was my doll. I've had her for like eight years, and she was brought into the show because just like Castor, and just like me, she also had a cleft lip and cleft palate. - Yeah, that's right. - And she got turned into a car on the way through and now she's in the show. - She's in the show. She, yeah, my wife found a doll that had, was, had a cleft indication on the face, so that Henry could have a doll that looked like him. And he was, he became quite attached to the doll and named the doll Anya after no thought. I said, what's the doll's name? Anya he said. I don't know whether he knew it was Anya before I asked or whether by asking, he decided the name was Anya. - Right. - He's a little too young to remember. You don't remember. - No, no I remember that movie. - You do remember? - I had no idea what I was gonna name him. - It is Anya, Anya. So Anya was such a fixture in his young life. So I, I gave Castor his very own Anya and I would have named if I could the car Henry, but we tend to have our cars names, some sort of, you know, cary sounds. and Henry doesn't, - Right. - Henry sounds like a person, not a car. - Right. - But we were able to name the doll the same name and the designers took a cue from, from Anya in trying to kind of evoke its essence. So I was very glad to have that aspect reflected in the show. - So Henry, what was it like to work with your dad? And Jeremy what was it like to work with your son, on this show? - Well, when we did work with each other, which was not a lot, he just, he just kind of wrote the episode and then he told me, hey, do you wanna audition? And I'm like, yeah. But when we did work with each other, like when I practiced my audition, he was very supportive and I'm really glad that he helped me out. - He has been a trooper and yeah, I wouldn't say it's been taxing on him. We haven't, we didn't work on it 24/7 or anything like that. - Right. - But I wrote a script, and when it came time for the audition, you know, I highlighted his lines and he read them through, and I have to say I have heard a number of voice recordings and I've been in a lot of auditions. Yeah, as you mentioned, I was a production associate, a production worker for Dreamworks Animation. So I've been privy to a lot of voice records. Henry has a very good cold read. He read through the lines and he was able to understand the emotion needed, and I think my wife is an actor, he has that. - Uh huh. - It's DNA, he's able to evoke emotion and personality fairly succinctly and quickly. So I talked him through a couple of things 'cause I kind of know the tone of the show and he glommed onto that rather well. And when we went into the record, he, I think did two or three takes for his lines, but not too much more than that. They were pretty pleased. - Amazing. - And he came in with a take. He came in with a kind of a performance in mind. He had done his homework. So I'm impressed. He puts in the work. - That's great. To our audience, I hope that you are enjoying this episode of myFace, myStory. Whether it's your first time joining us or you've been with us since the beginning, make sure you've subscribed to our YouTube and Apple Podcast channel and sign up for our mailing list at myface.org/mystory. So what was it like for both of you when you saw Cleft Hood on screen for the first time? - Hmm, do you wanna start or you want me to start? - Umm, you can start. - I saw it in bits and pieces throughout its production. As soon as I heard that they had animated Henry, I brought it up on the server and watched it. And what a thrill, to know that the geniuses who animate these characters were listening to my son's voice, and molding the performance based on that voice. It was really exciting. And I showed Henry, so I, I think I showed him all the iterations that I had access to along the way. And when they finally completed the episode, even before it was on air, you know, we were, we were allowed to watch it because we were, we were part of it. I brought it up on the computer and we sat and watched it and it was, for me, it was a pinch me moment. Here's my son as a, as a Disney character. I don't know if how that felt for you. - The first time that I saw it, my dad filmed a video of it, while he was on one of his meetings and he showed me that. - That's right, that's right. - Afterwards and I remember I thought it, he looks just like me if I were purple and if I were a car. - Oh, that's so funny, yeah. - And it was amazing to see, like, it matched perfectly with my voice, and I was so proud to be a Disney character. - Aw. - It was just kind of crazy. - Yeah. Like who wouldn't wanna be a Disney character? - Yeah. - We had a, when the show debuted, we had a small party. - Small? - Some of his friends. - A hundred people went. - It turned into a bigger party, of people and a lot of people ended up showing up. And I remember, I won't ever forget seeing all of Henry's friends surrounding him and how proud they were of him, and how excited they were for him having just watched the show. That was really neat. - That's great. So Henry, what was it like, what was the reaction of your mom when she saw it for the first time? - Oh, oh boy. Well, she was very excited and man, I can't, I can't remember. - She was, she was very, she was very excited. I, I'm a proud, I'm proud of this episode. So like Henry, I showed her all of the bits and pieces as soon as they became available to me. I showed it to her. So maybe in hindsight if I could do it all over again, maybe I should show her all in one fell swoop so she can get the whole experience at once. - Right. - But she had, I was too eager, too eager to show her. So, but she, I think is, she's so involved in the cleft community, on social media and, and so forth. So I think she, she was especially appreciative of what the episode has done in the community and has been by our side from moment one. She came with us to CleftCon, she's been listening to our, you know, speech, she's been, she read the episode, she gave me notes. So a real huge advocate and supporter. - That's great. So do you each have a favorite moment from the episode? - Hmm, I have a favorite moment. - What's your favorite moment? - Yeah? - I remember Castor's like on the Ferris wheel and then the Ferris wheel stops. - Right. - And Axl car comes up to the Ferris wheel, and then Castor slams the Ferris wheel, and then she, and then he makes it ca, Axl falls to the ground. - Right. - And I thought that that was pretty funny. - That was a good moment. - I have two favorite moments. The first comes from watching, so we had a number of question and answers that we did at, Henry and I in the wake of this episode. So we would watch it several times in these interfaces and we were on mute and I remember Henry watching himself as Castor and Castor refused, refused to go to the surgery and said more Ferris wheel, and ended up accidentally causing the Ferris wheel to break. And Henry, Henry said to himself, I'm the devil. I thought that was really funny. And then my, the part that touches me the most is the very end, when he wakes up after his surgery, and he sees that his smile is different, not better. We were sure to make sure it wasn't a value judgment, but it was different and he liked it. - Right. - And I really admire that part. And I'm also gratified, he said that the way they filmed him coming out of his surgery, kinda his haze, he said that that's kind of how he feels and how it looks to come out. So I thought that was, that was cool. - Yeah. - And to, to be able to give Castor another little stuffy that he could call Axl, that was a, a nice button to the show for me. - Right. - That's my favorite scene. - So I love the, the fact that there was music and song in it. And one of my favorites was, put yourself in another's wheels. I think that's right. - Right. - Can you tell us more about it, and about that song and? - Absolutely, the song is called Put Yourself in Their Wheels. It's about empathy, you know, put yourself in someone's else's shoes, is the metaphor. And that was baked into the idea when I pitched it, I wanted the episode to feature a lively, enthusiastic, wonderful, joyful character with facial difference. But I didn't want the episode to be a pure lesson about what clefts are, a kind of black and white, you know, detail about this is what happens to kids. I wanted to impart a more broader kind of heartfelt lesson. Empathy is big for me for so many people, and I felt like that was a good thing, a good concept for our audience, for Axl to learn to understand why this, this effervescent Castor who knows that he needs the surgery and wants the surgery. - Right. - But, he's also kind of avoiding the surgery. - Right. - So that was, it's confusing to her. So the song is meant to help her understand, you know, what it's like for someone else to experience something that she hasn't experienced, but she can use her imagination. And that I think very powerful. And I wanted to put that in the song and put that on screen. - Right. I can totally relate to Castor of needing to have surgery and then avoiding it and hoping that it'll just sort of go away, right. - Yeah you know, it's funny you say that and I'm happy to share at this point my, my first pitch, the story is very similar to what I first pitched with the, with the big exception that in the early, my early pitch had Castor afraid, afraid of the surgery. And I think that is reflective of our experience. Certainly when you were younger, I think you associate hospitals with unpleasantness, to say the least. So you it, and that's where the idea for the episode came from. - Right. - A young car that needs the surgery, but doesn't want to go to the hospital. And that was where the empathy was gonna come in as to why he's afraid of them. But what I learned and what I was, you know, part of learning to write for this audience is, you know, portraying fear is a delicate thing for preschool audience. - Right. - An example I can give you is if you do an episode about a, a young boy for example, who's afraid of the dark, just by being a good storyteller, you have to show, show the boy being afraid of the dark early before they learn to overcome that fear. - Right. - And in showing them afraid of the dark, you may accidentally model for children who aren't afraid of the dark, that the dark is scary. And that's what Disney Junior wants to avoid if at all possible. So it was suggested, is there a way to play the story with fear kind of lifted out. So I think that's what, that's it, it came out well and that's the way it is seen. But I, the idea of avoidance is still very much foregrounded. - Right. - In the episode. - Yeah, that was definitely me. And I was definitely. - I hear you. - I definitely did not like surgery. I was not a good patient, I must say. So how has your life changed since finding a community of people with facial differences, and realizing that you could use your voice to make a difference? - Well, at the start of this when, before Cleft Hood was even a thing, I always kind of felt like I was the only person in my community who had gone through this stuff. But then Cleft Hood came out and I realized that it wasn't just me and there's so many other people out there. - Right. - Who have a cleft lip and a cleft palate, and now I feel always like, there's somebody who gets me out there. - Right. - You know? - Do you, was that kind of, did that hit home when you went to CleftCon and, - Yeah. - Saw so many others? - Yeah, I always say, and I think it's true, there's power in a shared story and knowing you're not alone. And when you meet others who are on that same journey, it can be such a, it's, because others may not understand who are outside of that community. And so when you find that community and hear others tell their own stories, you go, oh I'm not the only one who has felt that way or thought about that. So it is definitely, I think, empowering to know. - Beautifully put, and that's storytelling. That's, that's the beauty and power of storytelling. - Yeah. - And that's, I in many ways what Cleft Hood has done. So thank you for that. - Thank you. - So what would you like to say to parents and families who may be at the beginning stages of their journey? Just learn that they have a, are going to have a child with a cleft lip and a palate. - I would share with them that everything will be okay. Your child will be wonderful, your child will be, may not look exactly as you have imagined when you learned that you were going to have a child, but your child will be beautiful. And this, if anything, will give them a superpower because it will allow them to overcome hardship and difficulty early in their life. And that will resonate as they grow older. So you're gonna be great, your child's gonna be great, you can do it and you're not alone. - I love that. And Henry, what would you say to somebody, a young child who is maybe not quite sure or having a hard time, or what would you say to them? - I would say that it is perfectly fine to have a cleft palate and a cleft lip. And it, it's, yeah, it's kind of just like having a superpower because you get to see the world through a whole different point of view. You get to see the world as a person who's not like other people. You get to be unique. You are not different, you're unique. - Unique, I like that. So Henry, do you have the acting bug? Do you wanna do more acting in the future? - I do, but my mom does not want me to. - She's been through the ringer as an actor. It's tough out there. - Yeah. - To you know, we're, we will support Henry if he decides he wants to go into acting. But there's some heavy warnings, go along with the profession. - Right. So Henry, do you have an an idea of what you wanna be when you grow up? - Well, I really wanna be a video game designer, but if that doesn't work out, then I wanna be a National Geographic photographer, and if that doesn't wanna be work out, then it'll be a park ranger and. - Wow. Three, three jobs, two contingent jobs. That's a pretty good plan right there. - I like it. So you like taking photos? I love taking photos. - I love taking photos. - He's good. - Yeah. - He's good. - That's great. So where can people watch Cleft Hood if they wanna watch it? - They can watch it on Disney Plus. It is in the Disney Junior section, so it's called Cleft Hood and there it will remain as long as Disney Plus allows it to stay there, which I imagine will be quite a while. - Also, hospital waiting rooms are a really great place to watch Disney Juniors. - Sometimes they put it up, yep, that's right. - I like that, I like that. Yeah. So thank you both for sharing your story and about the Cleft Hood episode. I watched it, I loved it. And I actually watched it with my mom, so we both watched it. And even though we're adults, we still loved it. And I hope lots of people who are listening to this and watching it will watch it as well and have that conversation with their own kids about differences, about clefts, about empathy and all of that. So thank you. - Thank you for saying that Dina. And thank you for hosting this wonderful podcast and facilitating the sharing of other stories. It's so important. - It's been an honor. - Thank you. So Jeremy and Henry are an inspiration to me and everyone they meet. Everyone has a story and I'm hopeful that by sharing stories like theirs, we can create a kinder world. For more than 70 years, myFace has been dedicated to changing the faces and transforming the lives of children and adults with facial differences, by providing access to holistic, comprehensive care, education, resources, and support that paved the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the myFace Support groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to myFace, myStory on your favorite podcast app and on YouTube to get notified of our next episode. If you'd like to receive email reminders of new episodes, sign up at myface.org/mystory. That's myface.org/mystory. Thank you for joining us for this episode of myFace, myStory. Remember, it takes courage to share your story, so be brave and speak out. - Hi, I'm Stephanie Paul, the Executive Director of myFace. myFace is a nonprofit organization dedicated to changing the faces and transforming the lives of children and adults with facial differences. We do this through various programs and events such as the Transforming Lives Educational Webinar Series, Races for Faces, The Wonder Project, and the groundbreaking, myFace, myStory conversational series. You can learn more about all of these on our website at myface.org. If you enjoyed today's program, we hope you'll consider making a donation to help keep programs like this possible as well as to further the support of the craniofacial community. Thank you.…

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The Psychology of Facial Differences: A Conversation with Dr. Kathleen Bogart 43:24

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On this month's myFace, myStory podcast, host Dina Zuckerberg is joined by Dr. Kathleen Bogart, who will bring us on her journey growing up with Moebius Syndrome and why she pursued a PhD in Psychology that would shape who she is today. She will share some of her research including her most recent Facial Differences Disclosure Study as well as talk about the importance of mental health in the craniofacial community.…

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Finding Joy in Your Journey Growing Up with a Cleft or Facial Difference