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