A Mother's Journey: A Conversation with Erin Ashayeri

myFace, myStory

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<div class="span index">1</div> <span><a class="" data-remote="true" data-type="html" href="/series/the-vanished">The Vanished</a></span>

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The Vanished

إلغاء الاشتراك

منذ 5 weeksمنذ 5w ago

إلغاء الاشتراك

شهريا

Join us on a journey into the perplexing world of disappearances, where individuals vanish without a trace, leaving behind a void filled with questions and speculation.

منذ عامين 29:46

MP3•منزل الحلقة

On this month’s myFace, myStory, host Dina Zuckerberg sits down with Erin Ashayeri, the Mom of a child born with a cleft palate. When he was born, like all parents, they were thrilled, overwhelmed, and exhausted. Then to their surprise, they learned the next day that their son was born with a cleft palate. Erin shares her journey to finding support, a community, and giving back so that other mothers could have the products and resources they need in the first 4 weeks of life.

Learn more about the Newborn Craniofacial Care Kits at: https://www.myface.org/newborn-craniofacial-care-kits/

Donate a Newborn Craniofacial Care Kit today at: https://www.myface.org/welcome-baby/

If you’d like to learn more about how hospitals can provide Newborn Craniofacial Care Kits to new parents contact myFace at sandy@myface.org

Sign-up for Email Reminders at www.myface.org/mystory

Apple Podcasts: https://podcasts.apple.com/us/podcast/myface-mystory/id1573954821

Spotify Podcasts: https://open.spotify.com/show/0F7qJTNNj9LwIPtaMHrLRm

Amazon Music: https://www.amazon.com/item_name/dp/B08JJT9TK1/

Audible: https://www.audible.com/pd/Podcast/B08JJMXLCD

43 حلقات

#Society #Documentaries #Podcasting Education #MyFace #Dina Zuckerberg

A Mother's Journey: A Conversation with Erin Ashayeri

myFace, myStory

published منذ عامين

MP3•منزل الحلقة

Learn more about the Newborn Craniofacial Care Kits at: https://www.myface.org/newborn-craniofacial-care-kits/

Donate a Newborn Craniofacial Care Kit today at: https://www.myface.org/welcome-baby/

If you’d like to learn more about how hospitals can provide Newborn Craniofacial Care Kits to new parents contact myFace at sandy@myface.org

Sign-up for Email Reminders at www.myface.org/mystory

Apple Podcasts: https://podcasts.apple.com/us/podcast/myface-mystory/id1573954821

Spotify Podcasts: https://open.spotify.com/show/0F7qJTNNj9LwIPtaMHrLRm

Amazon Music: https://www.amazon.com/item_name/dp/B08JJT9TK1/

Audible: https://www.audible.com/pd/Podcast/B08JJMXLCD

43 حلقات

#Society #Documentaries #Podcasting Education #MyFace #Dina Zuckerberg

كل الحلقات

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Empowering the Facial Difference Community with Special Guest Adele Capitella-Liu 40:39

منذ 12 يومًا40:39

40:39

On this month's myFace, myStory podcast, host Dina Zuckerberg is joined by Adele Capitella-Liu, a retired NYC teacher and a passionate advocate for the facial difference community. Diagnosed with Parry-Romberg Syndrome and having faced the challenges of breast cancer, Adele shares how her personal experiences have shaped her journey of resilience and advocacy. As the administrator of the Adult Facial Difference Community on Facebook, Adele fosters meaningful connections and supports individuals navigating life with facial differences. Join us as Adele discusses the power of community, the importance of self-expression through art and poetry, and her mission to uplift and empower others in the facial difference community. PROGRAM TRANSCRIPT…

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Defining Beauty: A Conversation with Celina Leroy 37:00

منذ 20 weeks37:00

37:00

In this episode of myFace, myStory, host Dina Zuckerberg speaks with Celina Leroy, an artist, art teacher, and advocate born with a Port Wine Stain birthmark. Celina shares how her personal experiences have inspired her to create powerful portraits of individuals with craniofacial differences, such as birthmarks, cleft lip and palate, and Sturge-Weber syndrome. Through her artwork and accompanying video interviews, Celina seeks to raise awareness, end the stigma surrounding visible differences, and redefine society’s standards of beauty. - [Announcer] 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." I'm Dina Zuckerberg, your host, and Director of Family Programs at myFace. Like many of you listening, I have a craniofacial difference. 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. This podcast episode is made possible through support from the Integra Foundation committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, click Subscribe Now and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "myFace, myStory," please rate and review the program on Apple Podcasts so we can get a message of inclusivity and empowerment to more people. Today, I am joined by Celina Leroy. Celina is an artist, art teacher, and advocate. Born with a Port Wine Stain birthmark, Celina creates painted portraits of individuals born with craniofacial differences, including birthmarks, cleft lips and palates, Sturge-Weber syndrome, et cetera. She hopes that her work will shed light on this underrepresented group of people and end the stigma surrounding visible differences and disabilities. Along with each portrait, she gives a video interview of that person giving more context to their story and journey. Welcome, Celina. I really look forward to our conversation. - I'm so excited to be here. - Yeah. So can you share your personal journey growing up with a Port Wine Stain birthmark? And how did that experience shape who you are today? - Yeah, I was born with a Port Wine Stain on my chin, lip, and cheek. When I was a baby, I had like so many laser treatments to kind of reduce the color of it and the size. Like throughout my life, probably had like 90 or so laser treatments. - Wow. - Yeah, and then I had two kind of major surgeries on my lip to like reduce the size, because it's kind of larger on one side. And like with Port Wine Stains, it's a progressive lesion, so it gets larger as you grow. As any kind of like adolescence age, it will grow more. So that's why I've had those surgeries. So when I grew up, I always felt like pretty ashamed of my birthmark and really felt like I was different because of that and it's something that I should hide. So I like immediately like started wearing makeup and just kind of trying to cover it and blend in with other people. And I was always in the back of my mind like afraid that someone would notice, someone would see it and like just think that I was ugly or think that something was wrong with me. And it was like kind of like sad. I always loved making art since I was a little kid. And I wanted to create portraits of people with birthmarks. After I started going on Facebook and finding like support groups for people with Port Wine Stains, and I was looking at all these people and I was like, "Oh my God, like actually Port Wine Stains "are so beautiful." "They're like this red color, "and they're all different and unique "and they're like maps of color on the face." And I was like, "I should make a portrait series about this." 'Cause so many people feel like they deal with the same thing, like feel like that they're like ugly or something, so I wanted to use art to be like, "No, actually you're beautiful "and like you're a masterpiece." - Right, I love that. So I have a good friend who wrote a book about how she hid her difference for over 20 years, and then she came sort of out of hiding and how freeing that is. Was there a certain point in your life where you felt like you didn't have to hide anymore, that you could be who you are? Or maybe you still haven't quite gotten there, but I was just wondering. - Yeah. Actually like really recently, I would wear makeup like all the time and like only in rare situations would I not wear makeup. But this school year, so I'm a teacher. And this school year, I didn't wear makeup like the first days of school and like throughout the year. So it's been literally like a month. Something about like the kids seeing me without makeup. 'Cause you know, kids are like, can be kind of ruthless. And I like want to be putting up like this front that I'm like a teacher, like professional. Like I don't want them to come at me saying like, "Oh, you look weird and you're like..." And I still have those negative thoughts in my head. Even though I do all this work to try to like not have those thoughts, I still have them. This month, I haven't been wearing makeup. And I actually just brought my students to my art show today. - Amazing, I saw a video of it, yeah. - And I was talking about my birthmark and stuff. And like they were so supportive and sweet and loving. And I was like, hmm, like I didn't have to be so always like going to the negative of like how people will perceive me. - Yeah, it's hard to get rid of those negative thoughts, isn't it, especially when you have grown up with it somehow. - Yeah. - Yeah. - I think in some ways, that is one of the biggest challenges. So can you describe the process of creating a portrait of someone with a facial difference? And how do you connect with the individual to capture their story? - Yeah, so at first, I was just on Instagram, and I was like adding people and finding people. And then people would like request, like send me photos of themselves. And then I would paint them and talk to them and like post the process of making the painting. And they'd be so excited and it was like really great. And then I kind of like wanted to move on to like more serious work. So if the person lived in my area, like in New York, I would meet them and take their photo, and paint from that, and then also doing an interview with the painting. So like along with every painting, I'd put an interview. Because I think that it's important not only to see what they look like, but to hear their story and their journey. Because we're more than just our physical appearance. We're like a human that goes through so much. And it's interesting how like we're all so different but then have this like similarity of like looking different, and like feeling, and like just our journey to like self-acceptance. So yeah, I think that it's like really cathartic and nice. And like I get a lot from it like emotionally just like hearing everyone's stories and like connecting on that level. - When did you know you were an artist? - Oh, I grew up in a pretty creative family. Like my grandfather's an artist. Like my dad is like an antique dealer but went to art school. so everyone was like very encouraging of my art making. And then, because I was like pretty good at it at like a young age I guess, or I thought I was good at it... Everyone told me I was good at it, so then I was like, "Oh, this is my thing." So I like went to art school. I always loved drawing. And I always felt like, "Oh, that was like my talent," you know? So, that's fun. - Yeah; no, you are incredibly talented. And yeah. So how do you choose the individuals you paint? And how do their personal stories influence your artistic process? Where do you find them? How do you choose them? - Yeah. Well, a lot of it's just like, "Oh, I have an art show. "Like I need to meet people and like make it happen." Like and who's available and who's here. Some people, I think it's a process of... It's like a pretty big step for some people to put their face out there. Like, some people I've talked to and they wanna do it. But then somehow they flake and like they don't come through. I don't wanna be like, "Oh, you're flaking." But it's like, I think that it's hard for someone to really be vulnerable. And like I am asking a lot of them. So like putting their face out there and then also talking to me about their story, not everyone's like comfortable doing that. So the people that are, like feel like they're at that moment in their life and they're willing to talk about their birthmark or their facial difference, like being vulnerable, and they're in New York City. But I also started traveling and meeting people out like side of the country. So I took some pictures in LA when I went there in the spring. I went to France and England over the summer. And so I met up with people with birthmarks and took their photos. So hopefully, I'll be making paintings of them soon. Like it does take a while to make a painting. So there is like a kind of time delay with that. But I'm trying. - So I had the pleasure and the honor of being photographed and then having you do my painting and interview, which is pretty amazing. You are so incredibly talented. - Thank you. So I'm excited to see it. So I have to thank you. So as an art teacher, an advocate, what do you hope your students and followers learn from your advocacy work and your artistic creations? - Yeah, like it was interesting like today bringing them, the kids, to the show. I was like very stressed out the whole time thinking that they were like not gonna be into it or they're like, "Oh, it's too long." Like all those negative thoughts. I was like, I bit my nails. I was like so stressed. And then at the end of it, like Rick, who runs Positive Exposure, he was like, "You're doing so good. "Like this is amazing, they're so into it." And I'm like, "Oh, my God." And then once I went up front, they all like clapped for me and they were like, "This is so amazing." I was like, "Do you think I should edit it shorter?" And they're like, "No, keep it the way it is. "It's perfect." And then I was reading their notes that they wrote in the book and like how did they thought of the show. And they were like, "Oh, like you have so much confidence." "Like it's such a journey." "Like this inspires me so much. "I hope to make art like this in the future "that actually has meaning." And that really like meant a lot to me. I was like, "Yeah, what I would hope to do is like "not just art that..." I think art can have the ability to just be like beautiful. But then I think art that has meaning and helps other people is like, I think kind of better. So I hope that they would make that kind of art, like something that's meaningful and like is helping other people and themselves. - Yeah, I will say I think vulnerability plays a big part in this. And I understand what you were saying before about you have to be vulnerable in order to do this. I mean, I'll confess, I'm a little nervous that it's gonna be like up there and people are gonna see my interview. And yet, I think if we want to create awareness and we want to show people who we are, vulnerability has to play a role in that. Or else, what are we doing this for in some ways, I think. - Yeah, yeah, being vulnerable is really scary. Yeah, I agree with you. And I thank you for doing that and like opening up. And I know when I'm asking people these questions, like it's sometimes like you have to dig deep and like think about like the time that someone hurt you because of the way that you looked and like talking about it. And then I think just through the dialogue of talking about it and kind of being able to relate with someone else on that, then it'll like start healing those wounds that you felt. - And hopefully, helping others who may be. 'Cause I think, I always say this, but there's power in just knowing you're not alone. And so hopefully, by sharing the interviews and sharing those stories, others will say, "You know what, I feel the same way." And they may or may not even have a facial difference, but it's just their connection. Because I think we all have insecurities, whether we have a difference or not, but some are just more visible than others, right? But I think we all have those differences, or the insecurities that we feel about ourselves. - Yes. Like one of my students, I wrote on a board like, "What is the meanest thing that someone's said to you?" And I'm gonna post it on the gallery. One of my students participated because the rest of 'em left. So only one of them did. But then she was like, "The meanest thing, "like someone said that my hair, like my facial hair, "made me look like a man," or something. And I feel like those kinds of small things that you remember, that mean thing that someone said to you when you were a kid really relates to everyone. I feel like there are a few people that like have never dealt with that. So I think it is relatable. - Yeah. So to our audience, I hope that you're enjoying this episode of "myFace, myStory." But if it's your first time joining us and you've been with us since the beginning, make sure you've subscribed to our YouTube and Apple Podcast channels and sign up for our mailing list at myface.org/mystory. So Celina, what challenges have you faced in your efforts to bring attention to visible differences and disabilities through your art? Have you faced any challenges? - I guess one challenge is just like Rick has been great at Positive Exposure because they've shown my work two times. But like the in-between times, like where to showcase the work. And I'd love to like, any opportunities out there in the world. Like if you have galleries, no galleries, or places to show the work so like the message can be spread further. I think just awareness is about like making people aware, so as many people as possible. That's the challenges. - So related to that, in your opinion, how can art play a role in changing societal perceptions of beauty and breaking down stigma around visible differences? - I think, yeah, that's like my main goal. So I think that art can do that just by showing, giving someone the space and the platform to present themselves. That is, in its own way, like breaking down those stigmas. Because if you only see one type of beauty that fits in a certain kind of box, then you won't... Like art has the ability to expand our perceptions of what is beautiful by seeing other things that are beautiful. I mean, like 200 years ago, like European perception of beauty was like white, thin. It changes throughout time. And this can be very narrow and won't allow other beauty to come in until we like have diversity and see everyone. And then you're like, "Wow, everyone's so beautiful." - Right, do you think we're making progress or we're making headway? - I mean, I would say so, yeah. I mean, there's a lot of like initiatives to show diversity like in the media. I think, like "A Different Man." I think even just like having diverse bodies in like Victoria's Secret, like that is... When I was a kid, in Victoria's Secret, all the girls were like size zero, and perfect skin, flawless. And now, they're making an effort because that's like what the consumer wants to see. I mean, probably they could be doing more. But I do think like compared to when I grew up and like shows like "America's Next Top Model," like I remember watching those shows and being like, "Ah, like I wanna be a model. "Like I wanna be perfect, I wanna be..." And they would just tear down the girls if they were like overweight, and they were like not even overweight. You look at the videos, you're like, "This is so toxic." - Right, right. - So I do think we've moved like in the past 10 years in a good direction. Hopefully. - Yeah, I think that's right. I think we have a while to go, but I think there's definitely more attention to that, and more awareness, and we're seeing it more. We're seeing those people out there, the models in the media. But like I said, I think we still have those challenges. But I think we're moving, hopefully, in the right direction. - Yeah. - What has been the most meaningful or rewarding experience in your journey as an artist and advocate for individuals with craniofacial differences? - I think just having the opportunity to like showcase my work, and then hearing everyone's responses to it. Like hearing that the work is like moving them or makes them think of something differently, that is so rewarding. I'm like, "Oh, I'm gonna cry." If they're moved by it, then it makes me feel like all my hard work is like successful, and people are getting it and it's working. Like I had a parent, one of the chaperones at my trip, and she was like, "I was like gonna start crying." She's like, "I think it's so important "that high school students especially see this." She's like, "I didn't even know what I signed up for. "All this was great." And so like that moment I was like, "Yay, I'm so happy." - Yeah. - Yeah. - So you shared many stories through your portraits and interviews. Is there one that stands out to you as a particularly powerful or transformative one? And I know there's been so many, so I'm putting you on the spot. - I mean, yours was really powerful. Like hearing your story and how you like now are this like powerhouse running myFace and coming so far from like being a kid that like wanted to sit alone. And now, everyone is around you. - Right, right. - That's pretty powerful. And like, I think that those are the choices that you made to like be like, "I'm defining my life. "And I wanna go in this direction, and I wanna change it, "and like I wanna change the lives of others." And that's so powerful. Hearing like Austin, who I painted, just him talking about like disability rights and like how there should be more disabled people at the table and like making choices, and Pride and Disability Joy, like I love hearing about that. And now he's like, "People with disabilities "are not here just to make able-bodied people "feel good about themselves." I think it's really powerful. Like people are not just inspiration. They are like real people doing things, working hard. Like he was saying, like, "Disabled people are like the," what did he say? Uh, I forgot what he said. But it was like, "not your inspiration, "like to make you feel better." It's like, "We're inspirational "by doing inspirational things, "like being vulnerable on the internet." So yeah. Another one. My friend Ava, she was born with PHACE syndrome. - Okay. - She also has like a little bit of a Port Wine Stain. She's undergone like so many surgeries. And she also has like a learning disability, so it was like harder for her in school. But now, she's working as like a patient transport at Transporter, and like has a full-time job, and is spreading awareness about vascular birthmarks. And she's a runner. She like runs miles. She's like running everywhere. She's doing marathons. And I'm proud of her. Like, you know, she was like a shy kid, and now she has all these friends. And like, that's so amazing. Every single person is inspirational. I don't know how to choose just one. - Yeah, you can learn so much. I always say in my job, I feel like as much as I give, I learn so much from everybody else, that they give me so much more. And I imagine for you, what you're giving everybody, you get so much in return for that. And you learn so much, right? - Yeah. - So, what advice would you give to others with visible differences who are looking to express themselves or share their stories either through art or another medium, somebody like you who wants to express themselves in some way or, you know, do something similar in whatever way. - Yeah, I think it would be like just starting and like working hard and doing it and being consistent and seeing like what inspires you and like working on that. And then like, it'll grow from there. And like, what kind of art making do you like to do? Are you a singer? Are you a visual artist? Do you like painting? Do you like watercolor? Like finding your mediums that you like and then exploring them and making content, making your products. Like I think that art is beautiful, but it is a lot of work. So you do need to have a certain amount of like dedication and like go for it. And then once you do do that, and all that hard work will pay off and you'll like be like, "Wow." Yeah, just do it. - Love it. I know I think about writing sometimes. I always think, talk about negative thoughts. "I'm not a good writer. "I don't know if I can do this," all of that, you know? - Yeah, I also feel like those negative thoughts, like the perfectionism in you, like you just need to like start and then just do it. And like, just the process of making, process of writing, like through the process, you won't even have a moment to even think about is it good or bad because you're just doing it. - Right; right, right, right. - Then you can reflect maybe later. But I think, not even trying to listen to those thoughts. Because something is better than nothing. That's what I tell my students all the time. Because they'll be like, "I don't wanna, I don't wanna." I'm like, "Just finish it, like you're so close." A lot of people will be like starting a project and be really excited. And then they're like, "Ugh, I don't wanna finish." - And then you abandon it, yeah. - And then they abandon it and it never happens. It's like, "No, just finish it and then..." - So what advice would you give to other young people living with a facial difference who may be struggling with self-acceptance? - I'm just like thinking about it, 'cause I ask the same questions in my interviews, in like everyone's interview. Like Aaliyah was like, "Just do it. "Just be yourself. "Like go like push yourself, go out there." If you're like a young person with a disability or facial difference, like one, like see other people that are like you. Like try to connect with other people. It was really helpful for me to just talk to other people with birthmarks. I think when I was younger, I didn't wanna... I was so ashamed of my birthmark, I almost didn't wanna be associated with other people with birthmarks because that would be like acknowledging that there is something wrong with me. And that was very toxic. So I think once you realize like there are other people like you, there's nothing really wrong with you. It's just a like thing that happened in the birth. Like you just have a birthmark. Like it's not that big, it's not that serious. Like you're okay. And then you meet other people that are like you, and then you'll have so many connections with them. And that will be so meaningful and rewarding. - So when was the moment that you met somebody like you? - Well, there are many... Like I've seen people on the street that had birthmarks. One of my friend's mom had a birthmark, but she was like working for Avion Makeup concealer. So she had all this makeup. And she was like, "This is how you cover it, "boom, boom, boom." So I feel like, she was nice because I could relate. But then I was a little bit like negative 'cause I was like covering it. But she was great, like no hate. But I think the first time I like really connected with people was when I went like to the Vascular Birthmarks Foundation and I went to one of their conferences that they had in New York. And I met like a whole bunch of people with birthmarks. And then it was really like 2020 during COVID when I was like, "I wanna do this project," that I started talking to people more and like diving into it. So kind of relatively recently, four years ago. Yeah. - For me, it was in my early 20s when I started really connecting with people in the craniofacial community. And that was just sort of the beginning of it. Because I think, like you, I spent so much of my life wanting to hide it or not really talk about it or acknowledge it. And so it was not really until I was in my early 20s that I even started to talk about it really. So I think that's true for a lot of people, I think. Although I think there's a lot more support in doing it today than there was when I was growing up. Because you have social media. You have these Facebook groups. You have organizations like the Vascular, what is it, the Vascular Birthmarks Organization and myFace. So you're able to connect much more, I think, than when I was certainly growing up, so. So what advice do you have for parents who have just learned that their child has a facial difference? What would you say to them? - Well, my first thing is like, if they have a Port Wine Stain, I would definitely say like, "Go to a doctor and like see. "Check your kid out. "Make sure that they don't have like Sturge-Weber syndrome. "Or if they do, then like, it'll be okay. "Like you'll get the treatment. "Like there's a lot more. "Like compared to some people I've talked to "who grew up in the 70s and 80s, "like the treatment has developed so much more. "So your kid will be okay. "Like also, and then reach out to other parents. "Reach out to like people like me. "And we can, like, we can talk to like your kid." I don't know. Like I have to think about like, "Oh, if I had a kid with a Port Wine Stain, "like I would be so equipped to help them." But I don't know that I will, because it's not like genetic. And I think that's one thing that's different about like having a facial difference or disability. It's kind of like random between families. So your parents might not have the same experiences that you will have, the kind of connecting. Did I answer your question? - Yes, absolutely. So how important do you think it is being part of a community like myFace? - Yeah, definitely. I mean, going to the Spaces for Faces, I felt so like, finally like the sense of belonging. And I think that sense of belonging, I haven't really found in a lot of spaces where I felt welcomed and like I was supposed to be there. It's so major, like to feel you belong in a space, that you're accepted and understood by the people around you even if you don't know them that well. - Right. - And it was great. - And I think it's so freeing, I think, to know that there are others that are on that same journey. 'Cause sometimes, I think you can feel very alone, like no one else could possibly understand or no one else could have that experience. And yet, when you connect with others, you realize, "Oh wait, I'm not the only one." Others have gone through that same journey or that same experience or have felt that way. So I think that's the beauty of Spaces for Faces or when we all went to see the film screening together of "A Different Man" or what you are about to do. So share a little bit about... Well, this will come out after your gallery opening, but I know it'll be up for a couple weeks. So share a little bit about where the paintings can be seen and what's happening. - Yeah, so on October 6th will be my gallery opening of my portrait series, Defining Beauty: Portraits of Birthmarks and Facial Differences, at Positive Exposure Gallery. So the opening will be from one to four. And then afterwards from 4:30 to 6:30 will be like a life drawing event where some of the models who I painted will be like posing, and the audience will participate and draw them as well. - And how long will it be up for? - So it will be up for like a month but not in the original space upstairs at Positive Exposure. So if you wanna see it at Positive Exposure, you can email them. And they will be able to show it to you. - Oh, okay. - But also, all my stuff is online and on Instagram. You should follow me, Port Wine Stain Paintings. And hopefully, I'll have another show coming up. - Okay, so speaking of another program or another exhibition, looking ahead, what are your hopes for the future of advocacy and getting your message and your paintings out there? What changes do you hope to see in the future? - I hope that I just have more spaces to show my work. Any galleries or like interviews like this or just making more work and like having it go further so more people can see it. I hope in the future, there will be all different types of artists who have disabilities or facial differences and having a platform to create their work and have it being celebrated and understood by the masses. Yeah. Yeah. Like I want every kid to not feel like they're, like if they have any kind of disability or difference that they're not alone. Also, just for people to learn that it's not cool to make fun of someone further, something they can't change. - Right. Did you deal with teasing and bullying or anything like that when you were growing up? - Like I always feel like I was very sensitive, so I would kind of like to not allow that to happen, I would kind of really go inward in myself and just try not to talk to people. So I'm lucky I wasn't like physically bullied, but maybe like a lot of emotional bullying, exclusion, like people not wanting to hang out with me when I got older and around middle school age and just feeling left out. And I always thought it was because of my birthmark. And then just growing up, being older, like people being like... I would always hide it. So it was always like a fear. Like if I was dating someone, like if they saw me without my makeup, like would they still like me? - Mm, yeah. - Would their family still accept me? Like one guy I dated, he said, "Oh, like please wear makeup "like when you see my grandfather. "You know, he's old school. "He doesn't understand these things." And I was like, "Okay, I'll do it but like..." Yeah, you know. - Yeah. - Like who are you to judge? Like who are you? - Yeah. - Yeah. - So speaking of that, what would you say to your younger self knowing what you know today? - I would say, "You're so cute." Yeah, I think I did have like so much like self-doubt when I was little. And I just want like my younger self to feel like loved and have that community. If somehow I could have had the community when I was younger, that would've been really helpful. Because I think I just desperately wanted to feel included and part of something, and not feeling so different. So I would tell my younger self like, say, "Things will get better. "You'll find your community. "Just hold on, you'll be okay." - Mm. - Yeah. - And so who do you see when you look in the mirror today? - Ahh, this amazing person. Yeah, I'm proud of myself for being like so vulnerable and like letting myself out there. Like it's like kind of hard but like I'm proud of myself for doing it, and, you know, helping other people connect with each other too. Yeah, I'm very proud of myself, so. - Well, you do have a lot to be proud of. And Celina, thank you so much for sharing your journey, your advocacy through your incredible artwork. And I can't wait to see my painting on the wall, and everybody else's paintings. And to see what you have accomplished is just amazing and so special. So thank you. - Thank you, Dina. Thank you so much for everything you do in this. - Ah, thank you, thank you. I feel like it went so fast, the interview, so yeah, the conversation. So thank you. - I could just talk all the time with you. - Yes, exactly. Thank you. - Thank you. - So Celina is an inspiration to me and everyone she meets. Everyone has a story. And I'm hopeful that by sharing stories like these, 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.…

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Taking Control of the Narrative 51:26

منذ 25 weeks51:26

51:26

On this month's myFace, myStory podcast episode host, Dina Zuckerberg, is joined by Amy and Lazer Schefer, a dynamic mother-daughter duo who have turned their personal challenges into a mission of advocacy and support for the craniofacial and rare disease communities. Join us as we explore their inspiring story of resilience, the challenges they’ve overcome, and the impact they continue to make on the lives of others. - [Announcer] Welcome to "My Face, My Story: "Voices from the Craniofacial Community," with your host, Dina Zuckerberg. - Hello, and welcome to "My Face, My Story: "Voices from the Craniofacial Community." I'm Dina Zuckerberg, your host and director of Family Programs at My Face. Like many of you listening, I have a craniofacial difference. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "My Face, My Story" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, click "Subscribe" now and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "My Face, My Story," please rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. Today I am joined by Amy Schefer and her daughter, Lazer. Amy is a passionate advocate for the craniofacial and rare disease communities. She is Lazer's mom and a director of Advocate Angel, an organization that helps guide families through the medical maze. She shares her intense journey as a medical mom, navigating with Lazer through dozens of surgeries and challenges to engaging in pioneering research efforts and advocating tirelessly in one-on-one family assistance endeavors and legislative action. Lazer is a 20-year-old patient advocate and public speaker with Goldenhar Syndrome. She has appeared on the TLC series "Two in a Million: A Face Like Mine." She has also appeared on numerous podcasts and radio interviews and has moderated panel discussions at Seattle Children's Hospital. Welcome Amy and Lazer. I really look forward to our conversation. - Hi. - Hi. - Hello. - Us too. - Yeah. So, Amy, can you share the early days of your journey with Lazer's diagnosis and what were some of the initial challenges you faced as a mother navigating the medical care system and her care? - Well, we're country folk, and one of the biggest challenges that we had is we were at a teeny tiny hospital, nobody had ever heard of Goldenhar. We had a great emergency room, I mean NICU doctor, who stayed up all night trying to figure out what condition this may be. But the fact that we were farther away from the central areas where medical care happened made it more difficult, And then early on, we also, we knew we needed to get to a craniofacial team. - Right. - The team that was assigned to us through our insurance was a not well-known team. They met once every three months. They brought, they brought somebody in who said, you know, who was a professor emeritus, you know, who said, "Wow, this is really, "you won't find a kid like this very often." And that was kind of like- - Wow. - Their amassed wisdom, and it was hard... to get referred to the top team in the state, and the top team in the state was in disarray. They kept losing their funding. So, one of the biggest challenges for me, aside from not knowing ahead of time, despite all the ultrasounds and stuff, that Lazer was gonna be different, one of the biggest challenges was just getting situated in the right medical team so that the quality of care could be better than what we started with. - Mmm, right. And- - Yeah. - So you did not know, and did, and was there anybody else in your family that you knew of that had Goldenhar or? No, so this was a total- - No, the one and only. - Surprise for you. - Yeah. And luckily my dad was a psychiatrist, so he went to medical school. So he asked all of his med school buddies, "What do you do in a case like this?" And they said, "Find a craniofacial team." That was pure luck- - Right. - And not something that most people have. And, you know, some of the reason I just became an advocate is because... the information that families have access to is so scattershot. - Right. - And if you don't have that information, your results are way different. And not only that information, but lots of other kinds of information. So- - Mm-hmm. - We also just didn't have really great facilities, we didn't have great home health agencies, we didn't have, you know, it was, I had to learn how to fire people who were coming to take care of Lazer who- - Right. - Who, you know, didn't do as good a job as they needed to. - Right. - Lazer had a trach and a G-tube at the beginning, and other things, and it, you know, substandard care doesn't cut it. - Right. - So, there are a lot of challenges, and you know, common sense, you would think, okay, when any person is born, they're, you know, the medical system will wrap you in its arms and all will be well, you'll know what to do, you'll be speaking with the right people, and it's kind of, no, you actually have to take some action on behalf of yourself and your family. - Right. - To get that, so. - So, Lazer, growing up with Goldenhar Syndrome, what was some of the most significant challenges you encountered and how did you find the strength to overcome them? - I have a couple different answers for this, but one is, which is a very common answer, is just learning how to deal with people's reactions to you. - Right. - And I had a couple of like really, really hard moments that triggered like a whole bunch of years' worth of not wanting to be seen in public or like trying to literally hide the left side of my face. - Mm-hmm. - Because that's what I considered to be the more different side. Then, another one of the harder things has been dealing with my face changing so many times. - Mm-hmm. - It's like I get used to the way my face looks and then I have another surgery that is ultimately, of course, for the better, like betterment of my health, or at this point, I'm just now at the point where I can, I'm getting surgeries to more even out my appearance as well. - Right. - But learning to love each face that has come into my life over the 20 years has been one of the more interesting challenges, let's say. - Yeah. - And one of the main things that has like helped with that, honestly is just taking time. - Mm-hmm. - It took a lot of time for me to really start to, like, listen when my mom and like... my other close family members would say that, look, you really are beautiful. And I would always brush it off like, "Oh, no, you're just saying that you're my parents, "come on, shush." - Right, right, right. - One thing that ended up really helping with that was I got really bored in 2020, you know, quarantine time. - Mm-hmm. - And I was on TikTok a little bit before that, but I started just posting a whole bunch of different, like, content regarding what it's like to live with a facial difference. - Mm-hmm. - And a lot of them were more funny, but some of them were really like expressing how it feels to look different. Even though I did, I have gotten quite a few like nasty comments over the same years, just sharing, sharing that part of myself really helped ground ground me in the sense that I, in the knowing that I am different and that's not a bad thing. - Right. - And different is beautiful. - Exactly. And when you talk about, Lazer, about, you know, having surgeries in your face changing each time you have surgery, that's something that I've heard quite often from individuals in the craniofacial community, so I don't think you're alone in that. So you both have touched on it, but advocacy has become a significant part of both your lives. And so I'm wondering what motivated you to turn your personal experiences into a mission to support others in the craniofacial and rare disease communities? - Well, I can say for me, naturally people started referring people to me because I had bushwhacked a path through the jungle with a machete, and they were like- - Right. - "Talk to this lady, figured it out." So I naturally was doing that and I was passionate about it. And even to the extent where I had some medical professionals referring people to me, 'cause I could say things they couldn't say. Like, in this previous state we lived, G-tube food, once a kid had a G-tube, the doctor was legally responsible for failure to thrive. I'm doing a little quote marks off the screen, and failure to thrive in Lazer's case was, they were putting formula through the G-tube that was a bunch of chemicals and that didn't, Lazer's body didn't like that. - Right. - It's kind of a simple matter. But the doctor had responsibility... Like, in other words, if you have a non-G-tube food kid, you can feed them, you know, Velveeta and Cheetos and, you know, gummy bears and nothing else and nobody gets in between you, not that you should. - Right. - But... if you take your kid off of the prescribed G-tube food, you can have your kid taken away in the state that I was living in, so it started at a very young age, 'cause this medical person from DSHS couldn't tell people, "to use goat milk... "or use the breast milk bank." - You know, so she'd say- - Right. - "Talk to Amy." So, because that's how Lazer began thriving. - Right. - You know, just having natural food, so I worked out a special thing with the dietician to basically look the other way for a couple weeks. And if Lazer's weight went up, then we could, you know, have her look our way again. You know, these are the kinds of things, of course I would wanna help anybody that was, you know, right after me in the same shoes that I was in. - Right. - You know, and I think parents are just like that, or anybody that's gone through difficulty. You know, if you actually found your way through the woods, you wanna help somebody because you know what it was like and especially how long it took you, wouldn't it be nice if the next person didn't have to spend- - Right. - That much sweat or that much time, you know, with tough diagnoses? The longer something takes, the tighter the circumstances you might be in. So, we all, I love that about craniofacial parents and rare disease parents, and we're all ready to help, and that was my motivation. - Yeah. And Lazer, do you have anything to add to that about your motivation and why you- - Yeah. When I was younger, I had never met anyone with the same condition, Goldenhar Syndrome- - Mm-hmm. - Up until I was 12 and got invited- - Okay. - On that TLC show. And so I always grew up feeling very, very, very different and not really having anyone else who was in the kind of exact same boat. - Mm-hmm. - The other part is I have not seen a whole bunch of facial differences out in like the media, in the general media if it's not to like poke fun at them. - Mmm, yeah. - Or if, not like a villain in a movie, or something like that. And so a lot of my advocating just came from me... realizing like, "Oh wow, I'm not the only one here. "I'd also love to see more people like me." You know, just out in the world thriving, doing their life, and, I mean, that's what got me into it. - Right. What kind of feedback have you gotten since sharing your story and appearing on TLC's "Two in a Million?" How has that, what has been the feedback? How has that changed you or impacted you? - Honestly, just meeting someone for the first time with the same facial difference was like a godsend. Mm-hmm, yeah. - And really made me realize that, oh, there are a lot of other people that also have this issue, it's just not that common, right? So it makes sense. - Right. - But my mom actually would probably have a better answer 'cause I don't really know exactly the changes that I went through. - Okay. - Right after, but I do know that a whole lot of people were just sharing about their own kids- - Right. - Seeing me on the TV show or, I had a lot of families trying to get in contact with me, and that was really, that was really lovely, and also at the time I got overwhelmed and then kind of like, which is, I don't really like that I did that, but I was 12. - Yeah, I always say there's power in the shared story and knowing you're not alone and I just feel like what you just shared, that is so true. I mean, when you realize you're not the only one who has Goldenhar or been through experiences or had lots of surgeries, I think there's a comfort in that when you know you're not the only one, the day you realize that, so. - You know, and that's the thing with craniofacial differences is that Lazer always looked different, and what people were responding because of that, and it is super isolating if there's nobody like you- - Yeah. - And you never met somebody like you, and that was the whole premise of the "Two in a Million" series, it was a whole series. What if you had a condition so rare that you had never met another person like you? - Mm-hmm. - So, and the series was like these two people who had this condition meeting for the first time, some of them were adults. - Mm-hmm. - So, I think, you know, what I noticed after the show also is you had been singled out. That's easy to do if you have a craniofacial condition, you were singled out, you were bullied because of that. - Mmm. - And at that time, more like when you were 11, you started like looking for where the bully was, like it was your first understanding that- - Mm-hmm. - 'Cause we, your school- - Mmm. - Everybody loved you, you knew the people well, you had sort of, you knew you were different, but you didn't have a sense that it could be dangerous to you. Then after you were bullied it was like, "Oh, where's the danger? "You know, where's the danger?" And, "Potentially anybody could dislike me." And then you did that really cool bullying video for Pacer with Austin on the show, and a lot of people were like, "Wow, you guys are courageous, that was awesome. "Tell me more," and then you kind of flipped. It was like, "Oh, there also could be a lot of people "out there that really appreciate me "because I'm articulate," and you were, it really made a big difference. And then, so that's what I noticed happening - Right. - It was a kind of a weird lightning bolt from heaven to be like invited onto a show, and then even it was, you know, international, so, you know, a girl in Norway with a pony was like, "I have Goldenhar and this is my pony, "you wanna come ride the pony," like it was... wildly, it was a wild experience. - Right. So, Amy, you shared a little bit about Advocate Angel, but can you tell us why you started Advocate Angel and the work you're doing, you want to do, to navigate the complex medical maze, I know it is complex, and what inspired you to start Advocate Angel? - Yeah, it's basically, you know, I always found that when I was super up against it and had no options and didn't know what I was gonna do and was about to lose it, an angel would jump out of the woodwork, and I mean, somebody in Walmart would go, "I got you, blah, blah, blah." Like, and you're like, "What?" You know, so when that happens, it is so profound and you, there's no way to pay it back, you just wanna pay it forward. So, I... I think our family went through something really different because we moved in order to get the best craniofacial care because even though eventually we got referred out of the small town we were in to the major city, then out of that particular office to the top office, the top craniofacial team was falling apart, we went and we got bad advice there, basically. - Mmm. - They wouldn't do any surgery for Lazer until Lazer was six, and Lazer couldn't, Lazer had a trach and other things, so Lazer was always a very articulate person in sign language, right? And I knew as a teacher that not, Lazer not being able to communicate directly with somebody by mouth, but needing to sign to me and have me sign to somebody else, that would really not be good for Lazer. - Mm-hmm, right. - So then we got another, we got another input that, "Yeah, "we've been doing these surgeries much younger than Lazer. "Absolutely Lazer can have a surgery "to advance the jaw and remove the trach." And that required us eventually moving states. So, how that plays into Advocate Angel is. I know how, like we have... pretty much like 40% better across the board experience with everything and being now exposed to other families that haven't known how to advocate, or haven't had the team that we got, or haven't had... certain blessings that we've had, we've seen the outcomes be really different. So I just, I'm pretty much on fire about it. There's two things that you need to make a good decision. You need enough information, and typically it's really hard to get good information on, oh that's funny. And you need heart and courage, and that means connecting to people in a community, and so I just thought if I could help families get good information and expand their heart and courage, that would mean the world to me. - Yeah. And no doubt that this probably will help a lot of people, because I think you're right. I think when you have a child with a craniofacial difference and if you're not in a major city, it can be really hard to know how to navigate and you feel so alone in that, I think as a parent, you just feel like, "What do I do?" And I don't know about you, but I mean certainly my parents didn't have access to the internet and all these things, and Facebook. - No. - Or any of that, yeah, right? - Didn't have that. - We didn't even know about the Facebook support groups until I was 12, I think. - Yeah. - Literally, that lady from the show- - Yeah. - Was trying to contact me on Facebook. - Oh wow. - I didn't use Facebook, and plus, I thought this was somebody scamming, like they were gonna sell me a bunch- - Right. - Like, "We're the TV show with TLC." I'm like, "Yeah, right." So, they almost packed up the offer, like literally they were going, "Well, we're not gonna film this episode. "We didn't get the person, they never replied." And then, I dunno, somehow they reached me. - Right. - Yeah. - So, to our audience, hope that you're enjoying this episode of "My Face, My Story." Whether it's your first time joining us or you've been with us since the beginning, make sure you're subscribed to our YouTube and Apple Podcast channel and sign up for our mailing list at myface.org/mystory. So, Amy, as a mother, how do you balance being an advocate with the emotional and physical demands of caring for Lazer and managing all her medical needs? And I mean, although Lazer you are now 20, so I'm gathering, you probably are able to now make a lot of your own decisions, right? - Yeah, that's a lot more true. When I like reached 16, she was starting to go, "Now, here, you do this, I'll still do this. "Now you do this and this and I'll do this." - Right, right. - And over the years- - Yeah. - but now you, you get to do most of it. - Yeah. That's- - So that's what I'm happy for. - Yeah. That's actually one of the real timing things of starting Advocate Angel, because I've always advocated, people have always sent people to me, but now, you know, Lazer is thriving and... driving their own three trailer semi. I mean it's not a small transfer all that stuff over, and so, I am in celebration of all of that and have more bandwidth to share with other families. - Right. And... Amy, I think you are involved in also some research that's being done, if I'm correct. - Yeah. - Can you share about that? - Yeah. - Yeah, I've been involved with the CARE project, which is a study of craniofacial microstomia. It's a psychosocial study. So, we've interviewed, it's an NIH grant. Across five years we've interviewed caretakers, patients and medical professionals in a bunch of different ways about craniofacial microstomia. Rare conditions are very hard to study because amassing data, now that the internet is more impactful, it's easier, but amassing data used to mean that you'd have to fly people all to one city, and even finding all those people is hard with the rare conditions. - Right. - So, this is one of the first studies of craniofacial microstomia and it's, there's a, we've done a lot of published stuff about what the parents say are the hardest things and so that they can, we can take this information to providers and train them, you know? So, some of the first published stuff was about parents' comments that it's like drinking from a fire hose, there's so much going on. - Right. - And that's not something that, you know, providers have known. So, I'm involved with that research. I'm also involved with the EveryLife Foundation, RDLA, which is Rare Diseases Legislative Action. - Okay. - There's a lot of crossover from craniofacial to rare diseases. There are many craniofacial conditions that are rare, like where they are. - Mm-hmm. - So, RDLA pairs advocates with legislators to bring certain topics that are being considered in the legislature, to bring a personal voice to that. So, I just recently talked with my state representative and state senator about a piece of legislation that's going to allow Medicaid doctors to sign up for multiple states. - Okay. - That's really relevant because, and my personal story that adds good material for them so that they get why to do that is, I had the audacity to convince the top doctor for the surgery that Lazer got on their ear and hearing aid post, to get out of his exclusive contract at Cedar Sinai, get a license to practice medicine in Washington, and surgery privileges at Seattle Children's. And he agreed to fly himself out on his own dime and- - Wow. - Do the surgery with Lazer's doctor to train her. Who in their right mind would ask, like, like, I was shaking in my boots for a long time, but the, I did not see another way to do it. - Right. - And the point is, nobody should have to do that and he shouldn't have had to, bless his heart and soul forever- - Right. - Agree to be that gracious, and... I have a particular knack for stuff that another parent shouldn't even be expected to have. So, anyway- - Right. - So anyway, I was able to say all that to the legislators and RDLA coordinates efforts like that, that hopefully can give back to other families, again, in our circumstances. - Yeah. - That's great. - Gotta get past, yeah. - So Lazer, what advice would you give to other young people living with a craniofacial or rare condition who might be struggling with their own self-acceptance? - It's a little hard to say 'cause I think it's different for everyone. And one thing I would definitely say is join one of the support groups that like My Face hosts or Faces, which is one of the foundations that was really helpful to my family. - Mm-hmm. - 'Cause they have a whole bunch of resources on connecting with others with facial differences, with your exact condition if you want that or, but that was one thing that I didn't necessarily have a whole lot of growing up, but the moment that I met another person like me that had the same experiences in a lot of areas, that opens the door in the sense of, oh wow, no, I'm not alone in having these experiences and just 'cause I am different, it's not a bad thing. And, you know, I think that's one of the best, the best resources you can make use of. As well as just talking, sharing yourself. Even when it's hardest to be who you are, that's when it's the most important to. - Mmm, I like that. - That's beautiful, yeah. - And Amy, what advice do you have for parents who have just learned the child has a facial difference? - Well, I think now that the, like for example, My Face wasn't out and about in the public sphere- - Right. - When Lazer was little. Yay, now My Face is there and I'm constantly referring people to My Face because there are just so many resources. - Right. Thank you. - There's like, the ACPA, the American Cleft Palate and Craniofacial Association, they have vetted the craniofacial teams, and you wanna get to a vetted craniofacial team, especially if you have a more, if your child has a more serious involvement, you really want the top-notch pre-established team that you can get. The other thing is social media is really great. There are a lot of Facebook groups. The only, I have a hack for that though, and it's an important one. I see families getting on the social media groups and, you know, you're gonna have, as a parent, the uncomfortable experience of taking advice from a doctor who's never been in your shoes, and you also are gonna have access to parents, and you have to understand that even though they've been in your shoes in some ways, they haven't been in your shoes because they don't your exact kid. - And I- - Yeah. - I see people asking other parents like, "Should I get the... "whatever, Epibulbar dermoid surgery?" And it's like, well, you know, Lazer's Epibulbar dermoid is not obstructing vision, it's to the side of the eye and it's not very big. So if I answer that and I'm sort of like just answering from what I know, I say, "No, "don't get it." - Right. Right. "Our doctor said no." But, like, if it's occluding the eye and it's getting in, whatever, it's- - Blocking vision. - Blocking vision, right? - Right. - Then you should, so you have to sort of draw on your community and draw on your doctors and- - Right. - Really be with the decisions thoroughly, you have to understand that nobody is in your shoes. It's kind of a lonely road. - Right. - And even with Advocate Angel, you know, I'm reaching a hand, I wanna help, and like, I do what is called a... tiny challenge, and that is like a few sessions where I'm just listening and learning about you, 'cause every person in this situation, maybe you're not in a rural area, you're in a city. Maybe you don't have a good craniofacial team near you, maybe you do. - Right. - Maybe your Medicaid doesn't pay for stuff that my Medicaid does, because every state is different. There are so many particularities. So, get with people that you trust that can help you. And to second what you said, the support groups, that's the other thing I'm referring people to all the time, you guys as support groups. Oh my goodness. - Thank you. Thank you. - Our therapy, are you kidding me? Like, just being able to be around community. - Right. - It's priceless. - Yeah, I really believe that having that community is so important because- - Yeah. - Again, if you know you're not alone and somebody... You know, you have a three-year-old who's in a hospital so much, but you're talking to a mom of a 6-year-old who's further along on that journey and a mom who's 10 years old and 20 years old, and they can see the future because I think so many parents can't see the future. - Right. - For the child, you know, and I think- - I even had, so I had a family that I helped that, the man, who's now a young man, with a craniofacial difference had his vocal cords damaged in the last surgery, couldn't express, was isolated during Covid and no longer is served by the pediatric craniofacial teams, so care was an issue, and the degree of isolation of that is terrible. - Yeah. - And it... It's a simple thing that I said was, "Join a support group and you can type in, "or make yourself understood," because on Zoom, you know, people were- - Got that ability. - And that, just that simple thing, made a huge difference, even with, you know, different medical problems remaining, and different, like, these problems don't just go away like that. They're, you know, a long, a lifelong thing that you may have another question when you're 34. Right? - Right. - And you don't know any 34 year olds, so... Anyway, just being able to connect him to a group, that was awesome. - Yeah. Yeah. Can you talk about a mentor support network that has been crucial in your journey at this point? - Yeah, holy cow, I have the best mentor ever, that's Lazer's godmother. And if I, myself, had not had strong arms outside of our nuclear family to catch us and if Lazer had not had those strong arms, I literally don't know where we would be. I think it would be, we would be in a much different place, and we were just talking about that yesterday, because the impact of the isolation, and it's like a pressure cooker, it's a kind of a pressure cooker. And sometimes parents, you know, any parent, just is not like, they didn't come in with the skills necessary for the challenge in front of them. Like that's like the, almost the definition of parenthood, right? - Right. - So, this mentor is Anahata Graceland, and she like changed my whole life by making so much available. And even though she hasn't had craniofacial differences, she has had different genetic difficulties in her life, so just being like, you know, "I've been there. "Listen, let me tell you this. "You gotta do the Oreo cookie approach. "You gotta do joy on the front end, "then the difficult thing in the middle, "and joy on the other side. "And since you know you've got these appointments coming up, "schedule it, schedule the zoo, schedule the appointment, "schedule the kayaking," or whatever. - Right. - To have somebody like that is, this is the other part of my inspiration of being an advocate. I am blessed beyond belief to have had that. So, there's nothing like that, I tell you. - Yeah. - Yeah. - And Lazer, who do you think of as your greatest mentor and advocate, if you have one? - I would honestly answer the same. My godmother, Anahata, has been a very wonderful close friend, and, like, I'm forgetting the word, of course, "avid," there we go, avid supporter and like being able to relate to a lot of situations, interestingly enough, even though our cases are very different. And also just being a support to... remind myself of who I am in the more challenging times. - It is really important thing because, like when you have a lot of mental, medical... intrusion, I'm gonna call it. - Right. - Like, and you're trying to level up at your own skills and abilities to navigate because you know that, you know, from here you're gonna have a better outcome. You're sort of in a rabbit hole, and if you're too far down the rabbit hole and you forget your regular life and what makes you joyful and what gives you strength, you can get lost there, and that's one of the things, having a mentor and having a community brings, is like, you know, what did, you know, what do you do to enjoy? - Right. - Or just, just focusing, you know, after all, Goldenhar is just one sliver of life. It's a big sliver and an important sliver. - Right. - But, but... there's all kinds of big excellent life out there. - Right. - And part the balancing act is to just be in the larger excellence of life as much as possible and be really good at the stuff you need to do in the medical and- - Right. - System. - Lazer, I don't know if you feel this way, but I always, when I go into schools and speaking to kids, I always think about like how my facial difference is just one small piece of who I am. That I am so much more than my facial difference. I don't know if you've had that, but I really have come to realize that, that I'm just, that that's just is, at times, it's been a big piece, but it, I think as we get older it becomes a, we are so much more than our facial difference. - Mmm. Yeah, totally. - Yeah. So, looking ahead, what are your hopes and dreams for the future in the craniofacial and rare disease communities and what change do you hope to see? - One of my hopes is that I could come in and join more in with the craniofacial, like, groups that you guys have. 'Cause even though like I've done pretty well, over here, we don't really have in-person support. - Right. - Over on the West Coast as much as you guys know on the East Coast, and so I'm really excited to be coming to the races walk or- - Races For Faces. - Yay. - Yeah. - Yeah. - So I'm really excited to come and meet a whole bunch of you guys and come closer in with my people, and one of the things I hope to see more in the future as a whole is, see just more of us craniofacially different people being really successful with whatever they're wanting to do. Seeing media, seeing like models, seeing actors. You know, the one craniofacial actor, or difference-having actor that I've seen is Gaten Matarazzo, right? - Right. - And I didn't even realize he had a facial difference at first until my mom pointed it out. - Right. - And I was like, "Oh my God, one of us!" - Yeah. - Yay. - Right. - And- - Yeah. - So, I hope to see more of that because that was such a big part of feeling alone was not seeing anyone. - Right. - So, community and... having more of us out there is like great. - Yeah. - I feel like we've got- - And like this podcast. - A lot of work to do, but we're doing it. - Dina. - Yes, what? - Yeah. - Like this podcast. - Yeah! Right. - I mean, I was so touched when I learned about this podcast and just started seeing different people sharing their experiences. - Right. - It's almost unspeakable, just seeing people, and having it be normalized part of life. - Right. - It's precious. - Yeah, and it's also always really wonderful to see like what interests that... people have outside of their craniofacial difference as well. - Right. - So that's always a reminder to me too, that you are so much more than your difference, like you were saying earlier, and seeing, like, I watched... the one you did with Naomi and Aaliyah. - Uh-huh. - And just learning like what they're doing outside of having the craniofacial difference is like really wonderful. - Mm-hmm. - Thank you, so last two questions that I'd love to ask. So what would you each say to your younger self, knowing what you know now? - You got this. - I would say, it's gonna be okay. - Mm-hmm. - That's what I'd say. - It's like when I say, "You got this," it's like keep the faith, because you can't really see what is ahead. The doctors are gonna portray certain things, and unfortunately, psychologically, they're like, "This limitation, that limitation." - Right. - "This... "abnormality-" - Yeah. - And this lack of function and that, you know, these difficult, you know? - Right. - You can't reduce a person to that, and it's actually, you have to know that they have to cast it that way so that they can apply their measures of remedy, but that does not define your child, or you- - Right. - Or whatever, so keeping the faith is knowing that you will know more than you do now, you'll get better at navigating than you are now. - Mm-hmm. - You will use the information to make a better outcome and you will change the outcome and... you can totally defy odds knowing that. - Right. - So that's what "keep the faith is," and stay connected with people. - Mm-hmm. - So who do you see when you look in the mirror today? You can say it in one word, one sentence, a thought. - I see someone who is almost done with the major part of the surgery part of their life, and that's something that I'm really excited for. So every new surgery, right now for me, is leading up to like the quote unquote, "finally, "final surgery." - Good. - But I probably will need a couple more in the future sometime, I don't know when, but the main bulk of my surgery days are almost over, which I'm really excited about. I see someone who's... looking forward to what's ahead, because right now I don't know, but I'm exploring my options and that's really exciting. - Love that. Love that. So, thank you, Amy and Lazer, for sharing your story. - Thank you. - I am so inspired by your advocacy, your passion, and how you have, Amy, advocated for Lazer, and Lazer, how you've advocated for yourself, and what you're both doing, and so I can't wait to see what the future holds for both of you, actually, and I really appreciate that you have shared so much because I know that you're gonna help so many individuals who might be struggling with their own self-esteem or just the overwhelmingness of this medical journey, so thank you to both of you. - Thank you, Dina. - Yeah, thank you very much for having us on. - Thank you. So Amy and Lazer are inspirations to me and everyone they meet. Everyone has a story, and I'm hopeful that by sharing stories like these, we can create a kinder world. For more than 70 years, My Face 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 pave the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the My Face support groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to "My Face, My Story" 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 "My Face, My Story." Remember, it takes courage to share your story, so be brave and speak out.…

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Two Sides to a Face: A Journey from Adversity to Advocacy 42:53

منذ 29 weeks42:53

42:53

On this month's myFace, myStory podcast episode host, Dina Zuckerberg, is joined by Chelsey Peat, born with Sturge-Weber Syndrome, and recently published author of her memoir, Two Sides to a Face . She will share her journey from childhood, marked by curiosity and challenges due to her condition, to her current achievements and advocacy work within the facial differences community. She hopes to serve as a beacon of hope, encouraging deeper understanding and acceptance for all who feel marginalized due to their physical appearance. - [Announcer] 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." I'm Dina Zuckerberg, your host and Director of Family Programs at myFace. Like many of you listening, I have a craniofacial difference. 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. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, quick subscribe now, and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "myFace, myStory," please rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. Today I am joined by Chelsey Peat. Chelsey was born with Sturge-Weber syndrome, a rare condition that led to multiple surgeries, including a lifesaving brain surgery as an infant. Despite doctors predicting significant limitations, Chelsey has defied these expectations throughout her life. She graduated from high school and college, and she's currently pursuing a degree in sociology, alongside a certificate in diversity, equity, and inclusion. With nearly 40 years of personal experience living with a facial difference, Chelsey has faced and overcome numerous challenges, including discrimination and stigmatization. Her deep understanding of these issues is reflected in her work with various organizations where she educates and advocates for individuals with facial disfigurements, differences and disabilities. Chelsey's debut publication, "Two Sides of a Face," offers an inspirational narrative of her life. This memoir details her journey from childhood marked by curiosity and challenges due to her condition, to her current achievements and advocacy work within the facial difference community. The book explores themes of self-acceptance, self-love and resilience, highlighting pivotal moments that shaped her identity and empowered her to embrace her imperfections. Through personal anecdotes and her role as a mentor and public speaker, Chelsey's story in "Two Sides of a Face" is not just about overcoming facial differences, but about transforming adversity into advocacy. Welcome, Chelsey. I really look forward to our conversation. - Hi. - Hi. So glad you can join me today. - Thanks for having me. - You're welcome. So can you share with us the moment you first realized that your facial difference would significantly impact your life? - I wouldn't say it was an exact experience. Growing up, I think everyone that grows up with a facial difference, you kind of just, you know that you're different once you're old enough to just, you just know. - Right. - But definitely going to school and those younger years, there was definitely times where for sure there were the points, the whispers, the stares, the awkward moments, you know, awkward conversations with grownups, noticing people looking a little too long, you know, all those awkward. Yeah, those moments where it was just less than respectful. - Yes. I can relate to that somewhat. So for those that don't know in our audience, can you tell us about Sturge-Weber syndrome and how rare it is? If you know. - Of course. Sturge-Weber syndrome happens approximately one in 50,000. Now kids nowadays can, I think it's one in 10, can be born with a birthmark of some kind. But Sturge-Weber syndrome is far more complex. Everyone always kind of takes notes when you say syndrome, and they automatically assume that that means we have some sort of disability or learning development, when that's not the case. It just means syndrome multisystem. So I don't have a regular birth mark. I have a hemangioma or port-wine stain. It goes far beneath the surface of the skin. And it interplays with blood vessel involvement through all the crucial organs and tissue on, for example, with me, in my eye, my brain, throat, sinus passages, ear canals, all that fun stuff. - Wow. - Yeah. - I did not know that. So how many surgeries have you had? - Well I had my one major brain surgery as a baby. I have had multiple eye surgeries for the glaucoma in my left eye, and I have had, oh, probably close to 100 cosmetic procedures on the birthmark. - Wow. So what is the most challenging thing growing up for you? What was the most challenging? - Trying to fit in, trying to make a friend, trying to have that inclusive aspect, you know. We, of course, at least for myself, you know, we were growing up having shows tell us, you know, everyone, if you look alike, you get along. And knowing, you know, that was never going to be possible for someone like me. It was kind of growing up realizing I wasn't gonna be that sweet princess that gets her prince, like all the movies told me that I should be. If I'm pretty, I'll get that magical kiss and I'll get my happily ever after. And you know, it's that instead you're siding with the bad guys in the movies because you understand their tragic backstory. You know, you kinda understand the whole aspect of everyone, all the Disney characters that were getting pushed to the shadows or, you know, sent to the outcast, you know, aspect. It was, yeah, you connected more with that. And I found myself, you know, "Phantom of the Opera," "Hunchback of Notre Dame," anybody with a scar or a burn, you know, I didn't like the heroes in most movies because I thought they were just self-entitled, you know, pretty people. - Right. Right. - It was, you know, more of those, oh my goodness, that poor person, you know, they went through this horrific thing. Well, they're the bad guy because they look different. So I must be a bad guy. I must be a villain. And yeah, it was having to try and break free of that. - So how did all of that impact your self-identity, self-esteem, especially as a teenager? 'Cause that can be really hard, right? I mean, for anybody, but especially with a social difference. - Yeah. The teen years were hard. I can definitely agree there. It was, you know, I tell a lot of people that's probably the hardest battle, especially for someone with a different or of disability, is the battle of self love. You know, you're basically every day getting up out of bed and being told by the world around you that you don't belong, you will never succeed, you aren't pretty, you know, things won't come easy. And it's trying to kind of break apart from all of that, push it all away and go, actually I'm not normal, yes, but my journey is gonna be far more exciting. So it was kind of that aspect of self-love and going, I get to have a far more exciting journey. It's not going to be like everyone else's. Instead I get to do things I know for a fact people look at me at awe with and go, "Wow." And, you know, using that more as motivation than you're a scary monster go away. - So do you have a specific example of a story where you felt especially isolated or misunderstood? - I can definitely, I can think of several, but I know for me, one bad example was, I grew up just perfectly, elementary school started one year and I'd already been struggling a little bit with bullying. And unfortunately a Batman movie got released. And it just so timed, yeah, it just so timed perfectly that the bad guy was the infamous acid-burn survivor Two-Face. - Oh wow. - And I remember the previews. I remember looking at him and connecting with him on a level, going, "I look like him. This is exciting." But then realizing that's not a good thing. And having the kids at school, the ones that had gone and seen the movie, you know, run up and start calling me that and with fingers and, "She's so bad." You know, "Oh, where's Batman?" And having that whole negative aspect of, "Yeah, you're the bad guy, we don't wanna play with you." And, you know, struggling with that for sure. Yeah. - So how did you deal with that? I mean, it's interesting because I talk to kids all the time when I go into schools and I try to tell them what they can do if they're faced with this. But how, I mean, how did you address it or deal with it? Or did you? I mean... - I have to bless my family at this point because they raised me so strong and resiliently. And I think that's such a crucial aspect is, you know, once you have a child with a difference, it's not only exciting that you've, you know, educated yourself and all of that, but it's also learning those great advocacy techniques so that you can start teaching your child how to educate and, you know, kind of jump in and say, "Hi," and start that conversation and make people see that we're not scary and all of that. And I know my mother, I bless, you know, I'm thankful that I got her as a mom because she taught me very early, you know, don't worry about the staring. Don't worry about the ogles. Walk up, say, "Hi." Start the conversation, let them touch it if they want to, you know, let them talk to you. Let them see that you are completely normal. You just have a few extra blood vessels. And that was me on the school playground, "Hi, I'm Chelsey. Wanna go skipping, wanna go play, wanna go do something?" And yeah, I still dealt with some people that were extremely awkward and couldn't handle it. But I think it gave me such tools to just kind of push past the awkwardness, deal with the elephant in the room. - Right. - You know, and get things done. Yeah. - Yeah. I think sometimes, especially for younger kids, it's the unknown, the fear of the unknown. So you introduce them to it and they go, "Oh, it's not a big deal." It's just a part of somebody. And it doesn't work for everybody. But I do think there is that element of just introducing them to what it is. 'Cause sometimes they just, the fear is, I don't understand. I don't know why they look so different. And that makes me a little nervous or even a little scared. Right? And so, yeah. So what was the pivotal moment in your life where you started to have more self-acceptance? I mean, I think it's a journey. I don't think it sort of happens overnight, but is there a point in your life where you started to accept yourself more? - I have to agree with you. It's definitely a journey. But I know one big piece of it for me was I had been going to the Boston Shriners Hospital and I was receiving laser treatments on my birthmark. And I could do that up until the age of 21. And my 21st birthday came and I knew I was done. I couldn't go back. I'd have to look for a private clinic. And there was so much trauma and stress with that, that I went, "Okay, Chelsey, well you've gotta either kind of grow into your birthmark or look more into makeup or look into a way to hide it or never leave the house again." - Right. - And I went, "I can't do that." You know, I wanna go out, live a life, do my things, you know? And that kind of pushed me into going, okay, well if I'm gonna go out, I'm gonna go out loud and proud and, you know, accept me for me. And it was definitely a journey. There were days, you know, you didn't wanna get out of bed or leave the house. There's still days, but it's, you know, dealing with that dark stuff to get to the light stuff again. - Right. And so speaking about going out into the world, what motivated you to pursue your education and to do what you're doing now in terms of studying sociology and DEI. - Growing up, I didn't see a lot of people like me. I didn't see a lot of people like me in important roles. You know, I'd gone back to school a couple times with things, I'd worked and then I got married and then I had kids. And I had two little faces looking up at me going, you know, "Mom, how do you do this?" And I went, if anything's gonna motivate me to be that role model, it's going to be all the cousins I grew up with, all the friends of cousins, all my siblings and my kids. And I look at my two daughters and I can look at them proudly and know that, you know, every little ripple that I make is for them. And they have in turn shown me so many instances where they're willing to get up and advocate for me or someone with a difference or disability. You know, and I know, okay, I did that. You know, I helped create that motion and that, you know, that's what should be done. Or those are the good ways to advocate or to talk about someone or deal with someone. Yeah. - Do you think your kids are more empathic because of your experience or because you have a facial difference? - Yes. Definitely. My 7-year-old iwears her heart on her sleeve. And she is the kindest, that's all the teachers ever tell me. And it's in her report card every time. - Aw. - And, you know, she's such a kind soul, but the fact that she will talk to someone and go, "I love your birthmark." And she'll have these conversations with people that I go, I wish someone had been there to have those with me. And I go... You know. Yeah. Yeah. Very impactful. - Yeah, so I don't have kids of my own, but I do have a niece and two nephews. And I feel like because they grew up with me and all the things that I was doing, 'cause we did theater at one point, telling the story of our lives and all of that. And I feel like they are so much more empathic - Yeah. - Because of me. And I just remember even when they were little kids and they would tell me stories about how they did, you know, kind things or they saw somebody who looked different and they talked to them, whatever that was, you know, it was just, so I do think it makes a big difference. So let's talk about your memoir, "Two Sides of a Face" and your journey with Sturge-Weber syndrome. So what is the inspiration? Why did you decide you wanted to write it? - People had been talking to me for years. You know, with all the adventures that I had had, and connections, and the rarity of my condition, and kind of my self journey. It kind of all just rolled into one. And I went, you know what? I think it's time. I think it's time I write some stuff down. And then taking note when I did start researching and looking into it, that there are only a couple books out for my condition. But both of them were told from parents' point of view. - Mm. Interesting. - And I went, that's great, but you weren't there dealing with painful treatments, or the bullying, or the interactions with people, or the biases in workplace practices, or, you know, all the things that I might've experienced. So I went, you know what, I think it's time. And you know, the more people with facial differences that get our stories out there, the more we can help the face equality movement along. So, I mean, I am pro that. - Yeah. So how long did it take you to do from the moment you had the idea to being a published author? - Probably about five years. Yeah. Yeah. Hobby on the side. - And what has been the, I know it's recently come out, but what's been the response so far? - So far it has been overwhelming, almost. The amount of people that have reached out and been like, I've actually had a few colleagues, even from like high school reach out and go, "I didn't know you were experiencing this or going through this," or, "life was so hard, you know, we just assumed." And I went, "That's the problem with assuming." You know, it's taking the time to kind of understand that, yeah, I'm different, I'm gonna experience my journey a little different than you. - Right. - And you know, people in the facial difference community have been so incredibly kind and sweet and sharing and, you know, proud. And, you know, it feels like I have family, extended family, now reaching out, kind of going, "We didn't realize your condition was so extensive," or that, you know, "the amount of work you're doing," or it's been enlightening and incredible really. - Mm. I think about doing it one day. We'll see, I'll write my own story one day. - Oh, I will buy the first copy. - Oh, thank you. Thank you. So I know you are doing a lot of advocacy and what is the thing that you are advocating for? What is your impact of advocacy? - Oh, several organizations. Of course, you know, Sturge-Weber Foundation, Vascular Birthmark Foundation. Here in Canada, we have AboutFace Canada, even Face Equality International, I work with them a little bit as well. All incredible organizations. The more work we can get ourselves out there, or the pun, you know, the more we can get our faces out there, you know, and be seen and be heard and be advocated for and be treated like anyone else, the more the perceptions and the cultural awkwardness and all of that can be worked on. So, I mean, for me, the more that we can kind of move towards working on critical things like diversity, equity, inclusion, workplace biases, bullying in the workplace, all these horrible stigmatizations that I know even just I have experienced, but I know many in the community have. You know, the more we can get the ball rolling on critical pieces to that, the better. - Yeah, I feel like people don't necessarily think, you know, we talk about bullying in school and all of that, but they don't really necessarily think about how that translates the transition from high school into adulthood, whether it's going away to school, whether now you're advocating for yourself, your parents aren't advocating for you as much. And then, you know, what happens when you go into the workplace. I'm not sure that is talked about nearly as much. - No. - The other thing is, I think that facial difference, and I think it's happening more and more, but it's not really a part of the conversation when you talk about disability and all of that. It's just not part of the conversation. And I think, as a community, what I love is seeing that there's more of that happening. And I think FEI, Facial Equality International, is helping that. I think all the organizations working towards, there's more awareness I feel like, than ever before. And I think, in some ways I think "Wonder," the novel, and the movie helped that along somewhat. For sure. - Yeah. - 'Cause it was for me, and I think for many others, the first book that even talked about it in a very big public way. But I don't know what you think, but I feel like there's a lot more work to be done. I just wonder if we're seeing the change that we want, what do you think? - Oh, I've just finished my certification in diversity, equity and inclusion, and I'm still working on my sociology. But even when it comes to academia, we do not have enough knowledge, if any, on any sort of aspect of disabilities other than these standardized, you know, couple categorizations. - Right. - Very similar to how the LGBTQ community feels where you have, you know, different representations that just aren't getting the coverage. Facial differences, we have barely scratched the surface. I know they're not mentioned. Doing personal work myself, just trying to look into the diversity, equity, inclusion aspect. So many organizations claim to be DEI-related. But none of them know anything about face equality, facial differences. You know, they go, "Oh, well are you part of a disability? Do you get coverage?" And I go, "I'm not disabled. No." I'm actually perfect. I'm, well not perfect, but I am abled enough that I don't classify myself as that. - Right. - Should that matter though? Does that mean that I get less support? As of right now, it does. - Right. - And that is heartbreaking for people, you know, like us that go, we need support, we still need help with things. Yet I have more human rights right now as a woman than I do as an individual with a facial difference. - Correct. - And if that doesn't hit people's heartstrings, I still remember hearing that for the first time and doing some research with my human rights aspect work. It was a slap in the face. It was heartbreaking to know that right now we have not made enough movement. And thank heavens for Face Equality International because they're working on it the little bit that they can. But we as individuals, that's where people can get away with so much workplace biasing and bullying and discrimination and stigmatization, because we do not have the support that we need. - Right. Right. And on the flip side of that, I feel like people, I think, make assumptions because we look different. Oh, you're not smart, you're not capable. And then those biases translate into the workplace because then you get treated differently because those assumptions are made. And that to me is, I think, one of the biggest challenges as well. I mean, there's so many challenges, but I think that is one of the biggest ones of how do you change that? How do you change that thinking? Well, wait, I'm smart, capable, I went to school, I went to college, all of that. But people still make those assumptions. And I don't know if you've experienced this, but even growing up, when I was with my parents or another adult, sometimes they would even talk to them. It was like they talked through me. It's like I was in the room, but I didn't really exist. You know? So there's so much work to be done. But I'm thrilled that it's happening more and more. I mean, I don't know how old you are, but I am as old as I am and I feel like in the last few years we're really starting to see it. There's more and more talk about it and more coming together as a community and advocating hard. - Yes. And I mean the more that we can do that, the more. You know, and that is the only, the only struggle that I see with us is right now so much of society is trying to break groups apart into littler pieces. - Right. - If all of us stick together as a community, you know, facial differences community, we are millions of people. So we can easily stand up and go, "Hey, it's about time people started taking notice of us in the right way." And we get progress moving in the right way. - I agree. - Yeah. - So to our audience, I hope you're 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're subscribed to our YouTube and Apple Podcast channels and sign up for our mailing list at myface.org/mystory. So, you talked about earlier about being married and having kids and going to school and all of that. So how do you manage the life-work-balance as a student, professional advocate, wife and mother. I'm impressed, by the way. - How I get sleep, that's usually what people, that's the first question they ask. "When do you sleep?" You know, and I laugh and I go, "I, somehow I'm still here." Advocating is always a crucial piece, but you know, of course end of the day my kids come first. That one's easy. Right now, unfortunately, due to workplace bullying, I'm not working. I was let go very unprofessionally. - Mm. Wow. - Looking for work, but that's okay, gives me more time for schoolwork and you know, kind of doing all my extra stuff now. It was actually perfectly timed with the book coming out. And right now it's more just kind of seeing where I'm needed and kind of going with the flow of things. Yeah. - So I have to ask, because it's something I think a lot about, like how did you put your self out there in terms of dating and meeting somebody and all of that? 'Cause I'm really curious, because it's something that I personally struggle with a little bit. - I think everybody does, but you know, especially for us, we're going to a little bit more because we're so stressed about not fitting that cookie cutter expectation of what the other gender or that other partner's going to need. For me, I was brave and I put myself out in a social situation. A group of friends went out and my husband happened to come with a friend and I had the courage to just kind of walk over and start talking with a couple people. And we chatted and then from there it kind of led to, well you know, do you have, this is gonna age me, "Do you have MSN messenger?" He asks me. And I go, "Yeah." He's like, "Well, do you wanna, you know, we can chat." And I'm like, "Sure, yeah, let's do that." And you know, one thing led to friends, to suddenly we were chatting almost every day to, "Hey, I'm going to the mall. Do you wanna come?" You know, and it was trying to gain that self strength and that I can do this, come on. To the next thing I know he's asking me out. And yeah, it kind of just went from there. I thank my lucky stars. And you know, it's having that bravery, that moment where you just go, you know what, again, heck with what society says, I have a connection, or I'm feeling this with someone and just getting the strength to do it. - Okay, I'm inspired. Thank you. So what advice do you have to a listener who might be struggling with their own self-acceptance? - Oh, first thing I would say is, especially with someone with a difference, is never feel that you are failing. Every day that you are getting up and you are taking a look at that mirror and you still have the strength to leave your house and do what needs done. You have exceeded more than the average person ever expected. From there, I would say that the hardest battle that you're ever going to fight is the one of self-love. And again, that is not something that will be cured or fixed in a day. That is a journey. That is, you know, finding that light at the very end of the tunnel and reminding yourself that if you only knew how incredibly special that you are, our journeys are far more extensive and elaborate and beautiful and different. And there isn't even strong enough word for unique. - Right? - That we should be celebrated and praised for the fact that we actually are accomplishing so much more than the norm. So it's just getting past those negative, indoctrinated, cultural setups that have been placed upon us and breaking free and just rocking it, you know. Being your own you and owning it and loving it and loving you. - I love that. Somebody recently told me to own my power. And I think I just love that phrase. I keep using it. I'm gonna own my power today. So, yeah. And what advice do you have for parents who've just learned that their child has a facial difference? - Oh, probably one of the strongest things that I know stuck with me with both my parents was, you're going to treat your kids like you would with any other kid. You're gonna treat them, especially when they're at home, like normal kids. - Right. - They want that normalcy. They don't want to feel like 24 hours a day, seven days a week, they are strange or odd. They wanna be loved for them. You're going to treat them the warriors that they are. You are gonna celebrate every accomplishment, love them, you know, but you're also going to know when to step in, and support them and be that shoulder because they're gonna come to you. They're gonna have days where they just wanna cry. Let 'em cry, let 'em scream out rock songs like my parents used to from their room. - Right. - And you know, be there as support. Know when to get them support and reach out to the community. Because a lot of us, especially us older generation, we are happily here for support, for questions, for love, to remind you you're doing an awesome job, because you are. And you know, connecting, family. We are extended family. We may not be connected through blood, but our experiences are so similar. We will understand every struggle that you're going through because we or our families have gone through the exact or similar thing. - Like I always say, there's power in the shared story and knowing you're not alone. - Yes. - It's so true. I think we all think we're the only one, you know, we have times when we think we're the only one. And then when you find a community, whether you found myFace, any community, and you realize, "Wait, you had that same experience. I had no idea. I thought I was the only one." So I've seen it with parents, with individuals. The other thing I was thinking about, because you said you had siblings, right? - Oh yeah. - How did it impact your siblings having you with a facial difference, would you say? - I know it affected them socially. I know there were friends and there were parents of friends that, oh, once they saw me or they saw my parents dealing with me, you know, they kind of pulled their kids away from my siblings. And you know, I actually have a spot in my book where, you know, I apologize to my siblings, because part of me felt bad that, you know, I may have affected them. But that's where it's so crucial as a family that you support one another. And you know that those siblings grow up to love one another and be strong and be a team. And if anything, my siblings probably brought me the most normalcy than, you know, any part of my world growing up. And you know, I still remember having the fights with my sister and you know, having my brother chase me up and down the stairs, and loving every minute of it because I felt normal. Nobody was talking to me about Sturge-Weber or birthmarks or seizures or anything medical. It was, "Chelsey, it's my turn with the game controller." And you know, it was that same, you felt like the kid in the TV and it was what we needed. So. - Mm-hmm. So how has your experience as a public speaker and social media influencer, helped in promoting your message of inclusivity and diversity? - Oh, the connections that I have made. I have had so many parents reach out and community members reach out. You know, people that didn't have the strength at the time to deal with what they were going through, that chatting with me, connecting with me, you know, reading some of my social media things, or even recently with my book, having a couple reach out after a book just to say, "Wow, you know, I get where you're coming from. I realize my struggle is similar, but I see how you got through it." And you know, I'm not trying to win gold stars. I'm simply sharing what I went through in hopes that I'm enlightening someone, or giving someone, you know, maybe they hadn't thought of something before and I've helped them reach a new point. So, you know, whatever support I can do,. Be the big sister that I wished I had growing up. - Yeah. So speaking of having support, is there a mentor or a support network that has been crucial in your journey? - Oh, there have been several. I know here in Canada, we have AboutFace Canada. They are an incredible organization. They have a wonderful program called the Peer Support Program, where individuals from the facial differences community can kind of connect with one another and you kind of get to sit down and chat. And I've been a peer now three times. - Okay. - And all three of my peers, you know, I feel like I've left them in such brighter positions than when we first met. And I thought that, you know, that's been life changing for me, knowing that I could make that difference. Along with the Face Out Project, wonderful organization, my friend Sora, actually, we all work together with that. And the amount of work that we're trying to do in the facial differences community has been enlightening and astounding. And, you know, the small progress that we can make, you know, you have that family, the support system of people that are going through similar things. - Right. - And we can touch on topics that, you know, not regular people usually discuss. So it's kind of nice to connect on that part. Yeah. - Yeah, I have found that we have the adult support group and I have found the same thing is when the power of one, but the power of coming together and talking about things that again, we can't always necessarily talk about with family or friends and outside of the community. So, yeah. So, speaking of community, and you've kind of touched this, but the importance of being part of a community like myFace and how important that is. - Oh, very crucial. You know, whether it's your organization, like if you have an existing condition or you join a support group because you've had an acquired facial difference, it's having that family and it's having the family that actually isn't connected or that, you know, isn't with you all the time, but understands every situation. Or you name a procedure and they go, "Oh, I remember getting one of those." - Yeah! - That was fun. Yeah. You know, it's, "Oh, and I had to deal with this." Or "Oh, I tried this new medication." You know, "Did you guys have this kind of side effect?" Or, you know, it's people that have gone through such similar things that you can have these most random conversations, that, yeah, family support is nice, but it's not the same. You know, your parents, your partner, they can try as much as they can to give you that hug and that support, but at the end of the day, unless I'm speaking to another person with Sturge-Weber, they don't understand laser treatments for birthmarks or eye procedures and yeah. It's that brother from another mother. - Exactly. Exactly. So what are your future goals, Chelsey, in your advocacy work and personal development - At this point it's, you know, getting out there as much as I can, sharing my story as much as I can, helping the face equality movement along as much as I can. Maybe another book. We're seeing, I'm trying not to fill the plate too full right now obviously. It's, you know, helping the face quality movement with the wave, you know, being that ripple, ripple starter. You are one as well. So, I mean, it's just an honor to connect with you. So that's where I'm like, ah! You know, it's whatever we can do to get out there in those positive moments and make those changes and know that, you know, the younger generations and the kids looking up to us go, "Wow, look what they've done for us." - Yeah. - It's making those hard conversations happen, bringing those elephants in the room forward. It's standing up and going, yeah, you know what, it's about flippen time people started taking notice in a good way. - And I think we, especially for younger kids with facial differences, for them to see us and the role models that are out there. And look, we are thriving members of society just like everybody else. And I think for them, it is so helpful for them to see that because they can. And even for parents to see it, because when they have a 3-year-old who's, somebody, a 6-year-old, even, they can't see much beyond the future. And so for them to hear our stories, which is why I think it's so important to get our stories out there because I think they need that and yeah. So what would you say to your younger self today, knowing what you know now? - I have thought about this and you know, there's days where I have like cried wishing I could just walk up to her. And especially through those teen years, I can picture her laying on the bed sobbing and I just wanna pick her up and I wanna give her a hug and I wanna just tell her, "Yeah, I know it's not fun right now, but it does get better. There is light at the end of the tunnel, I promise it gets so much better. Yeah, there's gonna be some struggles, there's gonna be a bunch of dark moments, but you're gonna shake through it and wipe away the tears, pop on some motivational music. Sing your heart out if you've got to, and stay strong, you know? Keep smiling. It's it's gonna get better." - I wish I knew that then, 'cause that would've been really helpful. Honestly. I can relate. So who do you see when you look in the mirror today? - Oh, I see a strong, confident woman. I see a woman who, almost in the sense of a true Gemini, my birthday's in May, so it works out perfect, but, you know, having one side of me that yeah, is strong and smart and coherent. And yeah, there's that little bit of a rebel side to me too, who also goes, you know what? I'm sick of being held down by very aged practices of what is okay and what is acceptable in society. I'm tired of being cast into the shadows. I would much rather be out in the light, being seen as a role model and being there in an image for all those kids and all those, you know, individuals that are struggling to see that, yeah, it's gonna be dark, but it's right there. You're so close. - I love that. So before we wrap up, where can people find your book? "Two Sides of a Face"? - I am available on Amazon, Barnes & Noble. It should be coming to Chapters in Indigo shortly. It is on Kindle. It is on Kobo. You can basically look it up online and you can probably find it. - Okay. So Chelsey, thank you for sharing your story and your journey. And it has served as I think, a beacon of hope, encouraging deeper understanding and acceptance for all who feel marginalized in their physical appearance. And I can relate to so much of what you talked about today. And I, again, encourage everyone to read Chelsey's memoir, which you can purchase online. And I confess that since we scheduled this last minute I only just started reading it. But I love what I've read so far, so I encourage everyone to do so. So thank you Chelsey. - Thank you. - Okay. So Chelsey is an inspiration to me and everyone she meets. Everyone has a story and I'm hopeful that by sharing stories like these, we can make the world a kinder place. 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.…

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Finding Courage, Finding Self: A Conversation with David Cohen 44:18

منذ 35 weeks44:18

44:18

On this month's myFace, myStory podcast host Dina Zuckerberg is joined by David Cohen, recipient of the 2024 myFace Courage Award. David talks about the dark twists on his journey of hope to acceptance of his life with Pierre Robin Sequence to who he is now. He shares what he thinks should be happening to support children and adults in the craniofacial community. Dina Zuckerberg: Welcome to myFace, myStory: Voices from the Craniofacial Community with your host, Dina Zuckerberg. Hello and welcome to Dina Zuckerberg: Voices from the Craniofacial Community. I'm Dina Zuckerberg, your host and director of family programs at myFace. Let me tell you a little bit about myself. Like many of us in the community, I have a craniofacial difference. 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. This podcast episode is made possible through support from the Integra Foundation committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, click subscribe now and we'll keep you updated on future episodes so you never miss out. And if you're a fan of myFace, myStory please rate and review the program on Apple Podcasts so we can get a message of inclusivity and empowerment to more people. As we begin National Craniofacial Awareness Month I'm very excited about my guest today, the recipient of this year's myFace Courage Award. David Cohen was born with Stickler's Syndrome. One of the primary symptoms of Stickler is Pierre Robin sequence, a rare genetic disorder that stunts the growth of the lower jaw causing the person difficulties with swallowing and breathing. By the time David was 10 years old, he had undergone more than 10 craniofacial surgeries to correct this issue. David, welcome to myFace, myStory. David Cohen: Thanks for having me, Dina. Dina Zuckerberg: Yeah. So David, you've been on a very long what we like to call a journey of hope, which includes not taking no for an answer when the US Navy turned you down for service. So can you share with us, David, your earliest memory of knowing you had Pierre Robin sequence? David Cohen: My earliest memory is probably, and this is thanks to the capturing of it when we did myFace video, but it was probably my second jaw distraction surgery when I woke up in the hospital. Dina Zuckerberg: And can you say a little bit about what that was and what that was like? David Cohen: I was about eight years old, if I remember correctly. It was my second jaw distraction surgery. And at that time in my life, honestly, the biggest challenges were the mental health aspect and the isolation that came with it. I remember being in second grade and always being taken out of class, being sent back to school after the surgeries with jaw distraction devices and people, especially the other kids not understanding what was going on. I wasn't able to play with other kids my age. So the isolation that comes from that was probably the biggest challenge. But I had a loving family and I was lucky enough to have the incredible angelic team of doctors and nurses that I had. So we get through it. Dina Zuckerberg: So what were some of the challenges you faced in school? Did kids bully you? Did they stare? David Cohen: Absolutely kids bullied me. At eight years old, people don't understand what compassion is. People don't understand what looking past physical appearances looks like. So having metal devices on your head, it just calls me back to a specific memory when I was in a playground in Central Park and kids kept their distance noticeably saying that I had lasers on my head, looking like an alien. And it's incredibly isolating, especially for a child that young when you don't understand end that it's not your fault and you internalize it. So it creates a bunch of shame messages that become part of your being. And also there's a lot of internal resentment both towards yourself. For me, resentment towards my family and towards, especially my mother as an older kid came up like, why was I born this way? And I wasn't even able to process that and that didn't even come out until I was 24 years old, which is how old I am now. So it really does create, using a building reference, it creates a building on a very, very rotten foundation that it takes a lot of work to clean out and rebuild. Dina Zuckerberg: So how do you think those experiences shaped your identity as a person? David Cohen: Well, it's still an emotional journey, and it is very much about resilience and that the challenges that I had as a child have given me some of my best, but also some of my worst qualities. I'll start with the worst, so I can leave the note on a positive one, but I was very emotionally immature and I'm learning now how to properly handle my emotions also back then and until very recently, I felt like I was a burden and I was just work for the people around me. And I am starting to learn that that's not true. We need to accept who we are. We need to accept that our craniofacial differences make us assets, not liabilities, which I'll touch on in a little bit with the military, but we need to realize that it's who we are, and that's nothing to be ashamed of. That's something I'm still working on now. Dina Zuckerberg: Yeah, I can relate so much to what you're talking about in terms of the resilience and how, I think because of our experience, we had to constantly, I don't know if fight's the right word, but to push ourselves in a way that I think others outside of the community may not have to do in the same way always. David Cohen: Absolutely. Dina Zuckerberg: And I think that it is so much more about the emotional. I mean, somehow for me, the surgeries, it was sort of less about the surgeries, but more about the emotional piece, the social emotional piece that we have to contend with, I think in a way that, yeah, others don't. David Cohen: Surgeries are physical, surgeries are physical pain. They are tangible. They are finite in time, and they pass. When you heal, you stop hurting. It's over. The emotional piece is the untangible, the emotional piece, the incomprehensible, because it's not visible. For the listeners who have seen the video that was aired at the gala where I was presented with the Courage Award, I touch on a piece of self-harm. I started self-harming when I was 10 years old. And the reason why I started self-harming is because I was no stranger to physical pain because of my surgeries. Whereas the emotional pain that we were dealing with, that I was dealing with was uncomfortable. It was strange to me, and I didn't know when it would end. So a lot of people who self-harm, the reason why a lot of people self-harm is because it takes an emotional pain and converts it into a physical one, one that's tangible, one that you have control over. And that was one of the biggest things that I had to kick. And one of the biggest things that was detrimental to my self-esteem was the fact that I was still self-harming. And while it helps deal with the emotional pain, it also reinforces it. So in order to stop, in order to help yourself heal, you first have to let go of those negative patterns that reinforce that negative pain. Dina Zuckerberg: Right. Yeah, that makes a lot of sense. So how did your family, because I really believe that when you have a child with a craniofacial difference, it does impact the whole family, including the sibling. And I know you have a sister. How do you think it impacted the rest of the family? David Cohen: So my sister was born when I was six years old. Part of that resentment piece that I touched on earlier, especially if the sibling does not have a craniofacial difference and is born, as I like to a boring normie, it creates that resentment towards your sibling as well. For me, what it looked like was when my sister was born without a craniofacial challenge, to me, when my parents now are paying attention to this seemingly perfect newborn baby, that gave me the message that I only get the attention when I'm sick. I only get the attention when something is wrong with me, because at that point, I wasn't going through surgeries. And then to reinforce that message when I was eight years old and I had my second jaw distraction surgery, the attention went from my sister straight to me because we were doing the video, I was in and out of hospital. So that sort of was the nail in the coffin for that specific shame message. It also created a lot of resentment towards my sister because she, to me, to the six-year-old me, she was the one who took away the attention, the love from my parents. And the reason why it's stronger for people in the craniofacial community is because the attention that we need is so much more because there's a medical aspect to it. So the delta between the attention that you have and the attention that you don't, between, to boil it down into simple terms, sick and healthy is huge. And when you throw a sibling's birth into the mix of that, that is an existential factor that is, for us, makes it very easy to just zero in on that and use that as the cause of that [inaudible 00:12:59]. And in turn, to go back to your question, Dina, in turn, that causes a lot more stress on the family because now there's a innate sibling rivalry that it's not solvable by an existential solution. I mean, my relationship with my sister only started getting better when I left for college at the age of 17, the better half of 17 too, I was almost 18 when that happened. And we have a lot to work on. There's 18 years, or rather 12 years of trauma to work on that, that we need to sort of unbuild and rebuild. Dina Zuckerberg: Yeah, I think trauma is very real for people especially in the craniofacial community, and it's something I think about often how that impacts so much of your identity. Yeah, so David, I think you appear so confident now. How is that? I mean, let me just preface that also by saying that I didn't have, in my opinion, nearly the confidence that you have at your age. So how do you think that is or why that is? David Cohen: So the military definitely increased my level of confidence as sort of a trial by fire. My first confidence lesson that I failed miserably was when my first day at work in front my division of sailors, I was a division officer in the Navy, so I was an officer in charge of 16 sailors. And the first confidence lesson was when I was standing right in front of my division, all people older than me and everyone had more naval experience than I did, but I was supposed to be in charge of them. And that shakes a person. You're being asked to tell someone what to do when you have absolutely no idea what the job entails. So that's what I meant by trial by fire, you have to learn on the job, learn as you go, and you also have to have that self-respect to be able to admit, respect for yourself, but also respect for the people you are interacting with, to be honest and to say, I don't know, please teach me. Dina Zuckerberg: Can you take us back, David, to when you wanted to join the Navy and what happened? David Cohen: I decide that I want to join the Navy, this is a little known fact, but I guess it will be much better known now, I did not originally want to join the US Armed forces. When I was in high school I wanted to join the IDF, the Israeli Defense Force, like my father and my grandmother before him. And my father, because I was graduating at the age of 17, I needed my dad's signature to be able to sign up for the IDF before my 18th birthday, he wouldn't sign. So in a rebellious move I went to a US Armed Forces recruiting office and said, "I would never join the US Armed forces, but just to say that I tried all my options, I'm going to go and see what they have to say." And I came out with an ROTC package. And I started doing ROTC. When I joined college, I went to George Washington University, which had one of the best Naval ROTC units in the country. And I was awarded a scholarship, I was awarded a contract. Dina Zuckerberg: So how did you go about getting, because I know you dealt with rejection and they weren't so eager to take you so quickly and you had to get people to say that you could serve in the US Army. Can you share a little bit more about that? David Cohen: Yeah, because of my craniofacial difference, part of the screening process is medical. So you have to give up all of your medical history, and for me there was a lot, as I'm sure you can imagine, and they got daunted. And they started diagnosing me with random, completely unrelated stuff. Most notably I think they diagnosed me with gastrointestinal disorder, reflux disorder, which I'd never had ever in my life. And so I had to start getting a bunch of letters from doctors, Dr. Flores saved my bacon when it came to this because he wrote me letters basically saying there is no reason why he shouldn't be able to serve and Dr. Flores at the time being one of the most notable experts in this field, he was taken as a subject matter expert and I was allowed through. But yeah, I mean, it's rough. You're born with something that you have no control over, and you're born with something that you didn't choose. It's not like mom went to a baby vending machine and plugged in a Stickler syndrome, cleft palate, all of that stuff. We have no control over this, our parents have no control over this, but something that you want to do with all your heart and something that you feel like you're made to do. I committed to the US Armed forces with my entire being, and I still do. I mean, I'm a veteran. I'm proud of my service, and I'm proud to have served alongside so many wonderful men and women, brave, our nation's bravest human beings. And it's an honor. But when you feel like you're made to do something and something that you have no control over stops you from doing that, it's heartbreaking. Dina Zuckerberg: Yeah. I thank you, David, for your service. So I was just thinking as you were talking that what's I think really hard is to dispel, if I'm saying this right, the perceptions that people have about people in the craniofacial community, whether it's you're not smart, you're not capable, I think that. So how do you think we can, or society can work to change that? I think education is certainly a piece of it, but I'd be curious to hear what you think. David Cohen: So the biggest one that I've noticed, especially in my interactions with other beautiful capable members of our community is that we look different. And that is the biggest, for craniofacial challenges, it's not as physically hidden as say, autism or another learning disability. So first of all, as you can see, I am not visibly obviously a member of our community, but I have a little bit of a conundrum where to, as I like to call boring normies, I don't look normal enough, but to members of the craniofacial community, I look normal. And so I should be an example to the rest of the world that you never really know. And it's important to be sensitive to this community, just like we're sensitive to people with learning disabilities. The craniofacial community, we come with challenges of our own and we don't need the rest of the world to pile onto that. And how do we combat it, I completely agree with your point about education. I also think that members of our community need to be comfortable taking a stance for themselves. And when we take a stance for ourselves, especially because many members of our community, especially those who are born with craniofacial difference like you and me, the hardest part is when we're dealing with peers, especially at a younger age. So our schools need to support members of the craniofacial community unquestionably. Dina Zuckerberg: I agree. David Cohen: There needs to be undying support from our school administrations. I'm incredibly lucky, I went to a Jewish day school and the value base of that school was zero bullying. It still happened. One million percent I was bullied relentlessly, but my school was supportive. They did conflict resolution. The whole nine. My school, without having not gone to the school that I went to, my experience would've been 10 times worse. But I would be remiss to say that all schools are supportive as mine, but they should be. And then in terms of the rest of the world for adults, we need legislation that protects us as a community, just like it protects any other minority community or any other member of the, so-called disabled. I hate the word disabled, but that's how we refer to it in our society. But it is a challenge that we face that takes a little bit longer to get through and takes a little bit more work on our part and on our family's part, but that is no reason to believe that we can't do exactly everything that everyone else can do, sometimes even better. Dina Zuckerberg: I agree. And I think that sometimes I think we need to educate adults more than we do kids sometimes. David Cohen: Absolutely. Dina Zuckerberg: And I also believe that having a craniofacial difference needs to be a part of the conversation. I feel like it is not currently part of the conversation- David Cohen: Oh, a million percent. Dina Zuckerberg: ... especially around disability, although I know you don't like that, but around all of that, we are not part of the conversation at this very moment. I think we are moving in that direction because there are so many advocates like you and me and others that I think are bringing it more to the forefront, but I think there's a lot more work to be done. David Cohen: Oh, absolutely. And something that you said, Dina really resonated with me. Kids need to be educated, but there's only so much that a child can actually internalize. How is a child educated? How is a child taught to be compassionate? By the behavior of their parents, by the behavior of the teachers, by the people, by the adults around them who they decide to model after. So if we can educate parents and teachers, that's how we educate our children. We don't educate our children by sitting them down, "This is what craniofacial difference looks like." We need to be nice to this person because [inaudible 00:25:52] even didn't even though they look different from us. That's not how it's supposed to be. In fact, honestly, in some situations it would actually isolate us even more because we become that person who we have to be nice to because they're different. We don't want that. We are the same as everyone else, we just have different... Our challenges just come in different boxes. That's the only difference. Our challenges make us assets, not liability. Dina Zuckerberg: Right. I love that. I love that. David Cohen: Because of my craniofacial difference, I'm a more compassionate person, I'm a more resilient person, and I'm more measured in my thinking than the average 21-year-old was graduating college and joining the service. So I was able to use those lessons to be a better naval officer and serve my country in a better way. Dina Zuckerberg: Yeah, I feel the same way. Yeah. David Cohen: In no way was it a challenge. In no way, sorry, it challenged me, in no way did it make me a liability. Dina Zuckerberg: Right, agreed. I feel the same way. I feel like it gave me all those qualities that you just talked about in a way that, because I think because of what I went through, it made me a more compassionate, kind, more resilient for sure individual because of my experiences. David Cohen: You are definitely a force to be reckoned with Dina. Dina Zuckerberg: Thank you. Thank you. So to our audience, if you are enjoying this conversation with David Cohen, there are more myFace, myStory episodes coming to you to enjoy. Please be sure to subscribe to our YouTube and Apple podcast channels and sign up for our mailing list at myface.org/mystory. You gave an amazing speech at the myFace Gala, in my opinion, and you also performed at the gala. And one of my favorite moments, David, was witnessing you interacting with one of the kids and really being a mentor to one of these kids. When I was hanging out with you before the gala started and just watching that connection, what was that like for you? David Cohen: I'm assuming you're talking about Joseph? Dina Zuckerberg: Yes. David Cohen: Awesome. Yeah, first of all, Joseph, if you're watching this or either of his parents are watching this, Joseph is a perfect example of the kind, warm-hearted person that represents who our community is. And being able to honor that and being able to foster that and nurture that kindness and showing that his kindness isn't shown as weakness, and that he's not going to be treated differently or be pitied for his craniofacial difference, I was able to give him what I wish I had had from a member of our community. And I'm not saying that my community failed me, not at all. The myFace community is the reason I am still standing and I was able to accomplish what I was. But if we had a more tightly-knit interactive community when I was a child, I feel like I would've been a lot better off than I was, and I would've had a lot less independent individual work to do growing up. But yeah, it's always heartwarming to see a little kid just be able to look past his own challenges and say, "I'm not going to let this get in my way," and just have a grand old time. It was amazing. Dina Zuckerberg: Yeah, it really was. It was an amazing evening. And what you just said about, I feel like I didn't have that tight-knit community for sure when I was growing up and I think that was the basis for why I do the work that I do today, because I want the children today to have the things that I didn't have when I was growing up, that support the resources, in the same way. I mean, I had some of it for sure. So what advice do you have for others struggling to get into a career they choose because of their difference? David Cohen: Short and sweet, and I'll elaborate on this, don't take no for an answer. You are an asset, not a liability. One million percent. I mean, by letting your challenges get in the way, you are doing yourself a disservice and you're doing the world a disservice because you're not sharing your own greatness with the world. You're not using your experience and your tenacity to make the world a better place. I can rattle off a few names of examples of what happens when we allow our challenges to better the world instead of keep us back. Naomi, a friend of mine who's a makeup artist, she does amazing work and she supports our community every day by doing so. Recently this year we have a finalist in Miss New Jersey as a member of our community, Aliyah. Seeing what can happen when we allow our challenges to propel us as opposed to hold us back, it's a beautiful, beautiful thing. Austin, who's a craniofacially different artist, he allows his "disability", I use that word because one of my favorite songs of his is Disabled, he allows his craniofacial difference to come out in his art and in turn help other people, other members of his community. And I am beyond honored and privileged to call myself a community member alongside them. So use these people as inspiration. Don't let your difference hold you back, and in turn deprive the world of your own greatness. Dina Zuckerberg: David, I love that. It's perfect advice. So now, what advice do you have for parents who have just learned that their child has a facial difference? David Cohen: If I could say just model my mother, I would. I was so privileged to have a mother who was able to find a balance between being there to support me and turning over control to the medical experts and the psychological experts. My mother, I can't speak for her especially because I'm not a parent, but I can only imagine how difficult it is to turn control over to professionals and give them control over your child and your child's wellbeing. As a parent, I can only imagine that's incredibly difficult to do. But my mom was able to do that, and while doing that, she never stopped being by my side, being there to support me. She was at every doctor's appointment, every myFace shoot. She was a constant in my life, and she was a constant of compassion and of protection, which goes into the other piece. So number one, please don't for one second think that admitting that you can't do this on your own is admitting that you're a bad parent. There are people who've trained for years on how to help craniofacial difference and allow those professionals who have that training to make our lives better, to save our lives, to minimize the long-lasting damage. On the second part, which is being there for your child, the most important part that my mother did for me was she was relentless in her defense of me, no matter how crazy she came off, no matter how unreasonable people told her she was being, my mother never, ever let up when it came to defending me against bullies, against schools. She was a force of nature. And having someone like my mother and seeing my mother go to bat for me and always being there for me, reinforced my self-worth and reinforced my knowledge that I am loved. I am love, I am loved, and I'm lovable. So please relinquish control to the professionals, but also go to bat for your kids. It doesn't foster weakness, it just shows them that they're worth it. Dina Zuckerberg: Yeah, I have a parent group, and when the parents, the moms, I tell them because they worry about their kids and they worry that they're doing a good job and I watch them and I just think... I tell them, "You are such incredible advocates for your children and that your children will remember that always." And just what you were just saying and what I say all the time is that the support that my mom gave me, I still remember to this day when she sat in the hospital after I had, recovering from surgeries and everything that she did for me, I still remember that to this day. And so I tell them that because I think they worry so much that they can't quite see the future and they're in the now, in the moment. So yeah. So why do you think a community like myFace is so important? David Cohen: Because we're niche. We're very unique. We are not a one size fits all. But we're also very unique as a community, and there aren't really resources out there in the normal infrastructure of disabled resources. So because of that, myFace is the one stop shop and needs to be the one stop shop. Therefore, because it is one community, I think the fact that we don't have separate communities for [inaudible 00:38:07] and all of the other craniofacial differences, it makes us more unified. So being able to have the myFace community be for the entire craniofacial community, it is so incredibly eye-opening and strengthening. That's on the internal piece, on the external piece, without the myFace community, there's no advocacy. And we need the MyFace community to advocate for us in Congress for legislation, but as well as a unified front to educate the world at large, society at large to what craniofacial difference is and why it should be honored and respected and not shied away from. Dina Zuckerberg: Right. And also for people to understand that having a craniofacial difference is just one piece of us that we're so much, I think was so much more than our difference. David Cohen: Absolutely, one million percent. And that's what the education piece is all about. It's all about showing, like I said, we come in all different shapes and sizes, but it doesn't define us. We're not defined by what we have, we're defined by what we do, and we should be able to take our challenges and let them impact our actions for the better, not stifle who we are and what we do. Dina Zuckerberg: So David, what's next for you? What's on the horizon? David Cohen: Honestly, I have no idea in terms of my day job, however, I'm going to be a avid advocate for the myFace community and the Craniofacial community at large. I have made such incredible friends, a few of whom I've rattled their names off in the session of this podcast. But yeah, I'm going to commit my life to making sure that our community is well represented and well-supported. Dina Zuckerberg: And I look forward to working with you, David, on that because it's something I too am very passionate about. So last question, who do you see when you look in the mirror today? David Cohen: I still see a little bit of a cracked mirror, and I'm trying to repair that. But who do I see now? I see someone who is able to overcome a challenge and prove to a highly bureaucratic organization that sometimes the rules in place aren't the best ones to follow. Sometimes we need to rewrite the rulebook a little bit. I'm not saying that the Navy's rules aren't meaningful and they're not there for a good reason, they are. They're there to make sure that people who serve our country in the most stressful situations can handle those stressful situations. But I'm here to show that I see in myself someone who is able to take the rule book and push past it for the better. I see someone who loves to help members of his community and who wants to give back. But I also, like I said earlier, see someone who has a lot more work to do. Our journey of hope is never ending, and it's important that we as a community support each other's journey of hope. Dina Zuckerberg: I always say we're always on that journey. Somehow, I think it never quite ends, but it is a journey from the day we're born until we're older and hopefully wiser. So David, when you spoke at the myFace Gala, this stood out for me when you said, "We are a beautiful and able community, and that's what gives us strength. That's what gives us courage. Together as a community, we are unstoppable." And David, I think you are truly unstoppable, and I can't wait to see what the future has in store for you. David Cohen: Thank you, Dina. Dina Zuckerberg: Thank you. Thank you for sharing your journey with us. David's joy is an inspiration to me. Everyone has a story, and I'm hopeful that by sharing stories like these, we can create a kinder world. This podcast is just one of the many programs developed at myFace, a nonprofit organization that has been supporting the life journeys of individuals with craniofacial differences for 73 years. From the myFace Center at NYU Langone Health, to online support groups, to the myFace Wonder Project, created to increase visibility, awareness, understanding, and kindness among school-aged children and delivering new mothers of babies with cleft lip and palate special care kits. myFace believes every individual has value and the world is stronger when every person, no matter how they look, is valued, respected, included, and empowered to achieve their greatest potential. Have a great day, and remember, it takes courage to share your story. So be brave and send me your thoughts, go to Www.myface.org. And be sure to subscribe to myFace, myStory on your favorite podcast app and on YouTube to get notified of our next episode.…

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Stronger Together with Megan Gaydosh and Tiffany Kerchner 37:38

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On this month's myFace, myStory podcast episode, host Dina Zuckerberg brings you an inspiring conversation with Megan Gaydosh and Tiffany Kerchner. Both Megan and Tiffany have turned their personal experiences with facial differences into powerful advocacy work, promoting self-love, acceptance, and awareness. Together, they discuss the importance of visibility, advocacy, and support for those with facial differences and disabilities. Their stories highlight the strength found in community and the transformative power of embracing one's uniqueness. Tune in for an insightful and uplifting episode that celebrates resilience, courage, and the belief that we are truly stronger together. - [Announcer] 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 that 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. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. Today, I will be joined by Megan Gaydosh and Tiffany Kerchner. Megan, a former special education teacher, is now a birth doer. She loves to sing and write song parodies to inspire self-love and acceptance. She was born missing the seventh cranial nerve on her left side. While having a facial difference once held her back for pursuing her dream of becoming a singer and actress, she now confidently affirms that anything is possible and that differences only make us more of who we are. Tiffany is a nurse by day and a facial difference advocate on social media. She uses her platform to educate and spread awareness for the social injustices that her facial difference community faces every day. She was born with a rare neurological disorder called Moebius syndrome, which causes the right side of her face to be completely paralyzed. In her spare time, she enjoys reading, hanging out with her dog and cat, and tending to her houseplants. She believes it's time to break beauty standards and showcase more individual with physical differences, disabilities, and other medical complexities. Welcome, Megan and Tiffany. I really look forward to our conversation. - Hi, so happy to be here. - Yeah. - Hi, thanks for having me. - Yeah, so let's get started. Megan, can you share a bit of your personal journey of growing up with a facial difference? - Yeah, like you said, born paralyzed on my left side, missing a facial nerve. And it was always something that I felt needed to be fixed or was always hoping for some surgery or something that would make me feel and look normal. And in my teens, I did have a two-part nerve graft surgery where I did get some more movement on my left side. But I found that even having surgeries that still was not going to look like most people, and that even having those surgeries brought more questions and comments about scars and how long is it gonna take to smile normally and just kind of added some extra layers of insecurity, actually. But I'm glad that I did it because I think I probably would have wondered what if, if not. But I think in realizing that my face is going to be different for my whole life, it felt kind of crushing in my teen years and then into my like adult years, making connections with my family and with other people with facial differences and finding that community and seeing them as so beautiful helped me be able to then see that in myself and just sort of completely reframed how I see my difference. Like now I feel like it's kind of like a superpower, like I can make a difference with my difference instead of feeling less than because of it. - It is freeing, right? I mean, when you can just be out there and sharing who you are without needing to hide it or being uncomfortable with it. And I think it's definitely a journey. So Tiffany, I imagine you can relate some and can you share with us your personal journey? - I feel like I should be talking about how traumatic my childhood was because there is the trauma of being hospitalized frequently. There is the trauma of the negative stigma against us and going out in public and then being bullied in school. But I was a pretty happy child despite everything. I think between the ages of two and 16, I had 13 surgeries. Despite all of that, I was still happy and I did still as happy as I was, I did have that shame about my appearance. I started growing my hair out and I started wearing it a certain way so that it wasn't as visible when I was out in public. And like Megan said, I would hope and pray like one day I'd get a phone call like, "Hey, we're gonna do the surgery "and you're gonna look like everybody else." And that day never came. And I carried that shame with me. And I think just when I started getting like more onto social media and I started seeing more people with facial differences and I'd be looking at them and I'm like, "Wow, they're so beautiful. "Like look at that woman, she's so beautiful." And then one day it clicked and it's like, "Well, if she's beautiful with a facial difference, "why can't I be beautiful with a facial difference?" And then I just started seeing my difference as this, I almost feel like it's a gift because it's made me the person I am. And it's given me this community of people. It's given me a lot. - I always say it, right? There's power in the share story and knowing you're not alone. And when you find that community, it really does make a big difference to realize, "Wait, I'm not the only one that felt that way. "I'm not the only one that thinks this way." - Yes. - So Tiffany, why did you want to become a nurse? - As I said, I spent a lot of time in hospitals, in doctor's offices. When I'd have surgery, I'd spend a couple of days up to like weeks at a time in the hospital recovering. And some of my surgeries, I would have drainage tubes coming out of my head and face area or wherever they operated on. And it would just make my hair this like matted mess and just from laying in the hospital bed. And it was the day I was being discharged and I had my nurse and her name, I still remember her name was Brittany and she was wearing a butterfly on her shirt. And I will never forget her. She came in to go over the discharge paperwork with my parents. And then she said to me, "Why don't we go take a shower "and I'm gonna fix your hair "so you can look really pretty to go home." And she washed my hair and she put my hair in braids. And I was like, wow, like she didn't have to do that. Like I know how busy her job is. I know she has more important things to do yet she took 20 minutes out of her day to make me feel good. And that really inspired me to want to do the same thing for other people. - Megan, I know you were a special education teacher and now you are a doer. If, I don't know if it did, but did your facial difference influence your choices? - Yes, because I really wanted to empower kids with disabilities. And it was sort of in that job where I did kind of start to make the shift of like, 'cause I would talk to my students and tell them, anything is possible. You can do anything. I would like show them slideshows of different people with disabilities who are famous. We would have these conversations of like, you can do anything that you want to do. And then I would kind of internalize that and be like, why can't I tell that to myself? 'Cause I definitely haven't done the things that I wanted to do, because I felt like that was not possible looking the way that I look, to audition for something or to put myself on stage. It was just always so terrifying. So I feel like in special education, it kind of helped me send that message to myself. And I did really, really love being a special education teacher. And then I just had my own children and found I did not have the time. I didn't feel like I could do both well or have patience for my own kids at the end of the day. And so that's kind of how I shifted to the doula role, because no matter how many babies I have, I will have baby fever. And it kind of helps me get the baby fixed. And in giving birth to myself and being postpartum, I really thought that I knew what to expect and realized I had no idea. And just wanted to help other women have an easier time through that process. - How did your journeys lead you to become advocates now? And was there someone or something that inspired you to want to share your story and messages with others? - Started for me on TikTok. It was about three years ago. And I was just scrolling, staying up late. And I just thought, there really is something for everybody here. I wonder if they're, I just searched facial paralysis, facial differences, and I just found multiple people in the community. And I just had this big aha moment of like, okay, these are my people, I want to join them, I want to do this too. And then yeah, the next day, I just started posting about my story. And I had posted before, but nothing about my face or my story of living with a facial difference. And yeah, finding that community kind of made it feel like a safer space, like I wasn't alone. Even if it didn't go well, I had these people in my corner. And the more I've done it, the more connections I've made. And like Tiffany, it's one of my, we call each other soul sisters. Because we have just so much in common and can relate to so much with each other. And yeah, it's just really cool to feel like you have this whole community supporting you. - And Tiffany, did you have anybody who inspired you or what made you decide that you wanted to do that? - I did have somebody who inspired me and her name is Megan Gaydosh actually. Similar kind of story, I had been, I think I joined Facebook in like 2007 when Facebook came out. And then when Instagram came out, I joined Instagram and I was posting, mostly just like my personal life, like pictures of going out with friends. And then I started learning more, like if you want to get more followers, you should post about like the same, one thing. And it's like, okay, so should I post about my plants? Should I post about reading books? Because I read a lot of books. It's like, yeah, I could do that. And it's like, but there's a lot of those out there. And then the same thing, I joined TikTok, I think in the pandemic, I think when everybody did. And I remember like, I was just scrolling on and Megan comes on and she was doing a parody of a Megan Trainor song. And I was like, oh my God, this is awesome. And I was like, wow, like people are making videos about their facial difference. And I'm like, this is it. Like, this is what I need to do. Like, what better for me to talk about than my life? And so then I started making videos and people started commenting like, yes, this is so relatable. And it's like, oh my gosh, yeah, like this is what I need to do. - I feel like you both by doing that, you give voice to others to feel that they can also share. I mean, look at the two of you, right? Megan did that and then Tiffany, you're like, oh, I can do that too, so. - Yeah, I hope so, yeah. - And can I just also say that I didn't have, well, you're somewhat younger than I, that I didn't have nearly that confidence or desire to do that at your age. Of course, I didn't have social media then either, so. So what are some of the social injustices you have encountered and how have you addressed them? - There's just such a stigma around facial differences between the media and then that translates into real life. I was called two-faced in school and deformed girl and constantly reminded that my difference was something to be mocked or something undesirable. And even just going out with friends, we went to a makeup counter at the mall once and everybody was getting their makeup done and she didn't wanna, she wouldn't do my makeup 'cause she was worried about my eye, I can't close my eye all the way. And that was just, as a preteen, going out with your friends and then just, it was so humiliating and I felt very discouraged from makeup at that point and was like, oh, maybe I shouldn't do this. Finding other people in the community wearing lipstick and emphasizing their differences. I always stayed away from anything that would highlight it and different, like Naomi, different creators who have all these amazing skills. I was like, okay, actually, I am gonna wear the lipstick. I am gonna do my makeup how I want but it's just like the injustice is everywhere all the time. Majority in the media and I think that's the biggest thing that we are trying to fight against is like, yeah, having a facial difference doesn't... We're just like normal people, you know? Can we just not see any more villains? - Right. - And like, yeah, or like a pity story or yeah. We just need more representation and inclusion to just show us who we are. - Absolutely, I can totally relate by the way to wearing makeup and always feeling like that it's accentuated my differences. And I just believe it or not, just starting to get much more comfortable with it and having Naomi and for those who don't know, Naomi is a makeup artist and photographer also born with a facial difference and having Naomi do my makeup recently has, and then looking at it and going, wow, like so beautiful. But like, I never felt that comfortable with it. So yeah, it's definitely something that it's grown on me to realize that I can wear makeup. And one of the things is always my lips. Like I feel like if I accentuate my lips then people will see the scar. - Yeah, I mean, there's a lot of social injustices I think that come along with having a facial difference. Everywhere you go, you get stared at. It just feels like I can't go anywhere without people staring at me. And it's like, oh my gosh, like I just wanna go grocery shopping one time and not have everybody staring. And I feel like I also didn't get jobs that I was more than qualified for. And I was actually told during an interview that you're very qualified that you don't have the look that we're going for. - Wow. - And it's funny because at the time I didn't even think anything of it. I was just like, okay, like maybe they wanted a blonde person like maybe they wanted a blonde girl, but I was like, all right, maybe it's my curly hair. I don't know. And then later on I was like, oh, it's because of my facial difference. And yeah, like Megan said, being portrayed in the media as villains, as the outcast, like the Quasimodos, the Freddy Kruegers, it just adds to that negative stigma. And it's why children I feel like are scared when they see people like us because that's just the norm in our society. And it just needs to stop. They need new ideas. - So I know this is a big question. So what do you think we can do to change it, to improve it, to shift the way we think about these things? - I mean, I think we're doing it. I feel like we're in a point of change, like little steps forward, which then can sometimes feel like we're taking steps back when we see facial differences portrayed in that way again. But I think everybody advocating is what's going to bring change. Like the more people that call it out and say, "Hey, actually, this is very harmful to those of us living with facial differences." And I do feel like, even with Disney, including in their show "Firebuds," the character with the cleft lip, little things like that are starting to become, I think, more accepted. And what I think is so cool about that is that character in the show is just a character. It's not emphasized that they have a cleft. It's just, this is a person that exists in the world. And I think the more that we see that, and it's not like, "Wow, look at what they can do even though they look like this." And it's just, "This is just a person living their life, hanging out with their friends, doing normal things." It is such a small piece of who we are, and there's so much more to tell. And I think we're heading in that direction, hopefully, little by little. - Absolutely. It is a slow process for sure. But I do, I feel like it's happening. There's things that are happening. - I agree. I think it would be awesome to see a movie where the main character has a facial difference, but it's a romance movie. And it's not about her having a facial difference. It's just, she just happens to have a facial difference and she's in this romance. And I think that it needs to start, like the education needs to start when there's babies and there's children and they need to be educated. Like, "Hey, there's people out there that look differently. There's people out there that have disabilities. There's people out there in wheelchairs. There's people out there that use walking aids." And maybe making, I've seen more toys out more recently than like when I was a child. Like I've seen dolls that are in a wheelchair. And I think like that is definitely a great step forward because it gets the kids like thinking. And then once they encounter somebody in real life, it's not like a shock. It's like, "Okay, I know all about this." And there's several children's books out there. I think that's the right step is to start teaching the little ones. - And I always, when I talk to the kids, I think about that a lot when I go into schools and getting them when they're young because then it's like, "Oh, it's no big deal." It's just, that's a part of who somebody is. Just like somebody has glasses or they have whatever it is. And I also love seeing when they wake up to realize, "Oh, wait, somebody else has hearing aids like I do. Oh, that is so cool." That too. And so I think getting kids, I agree, getting them at a young age to be exposed to all kinds of differences just helps put everybody in some ways on an even playing field. It's just like we all have differences. And I always emphasize that too, that we all have differences. - Right. - And how boring the world would be if we were all the same. To our audience, I hope that you're 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 subscribe to our YouTube and Apple podcast channels and sign up for our mailing list at myface.org/mystory. Can you each share a particularly impactful moment or story from your journey as an advocate? - Probably connecting with myFace is like kind of the first time that I got to see people in person that looked like me or that just got it, you know? And there's just something so healing and comforting and just exciting about getting to be with people for the first time that really understand you in kind of this unspoken even way. And yeah, getting to participate in myFace Celebrates last year and then again this year. But last year was my first time getting to be in person with people with facial differences. And it can feel very isolating and kind of lonely when you don't have those relationships. And so even though it's nice to have it from afar and talk to those people to be in person is just such a gift. And yeah, so I thank myFace for that. - And what was it like for both of you to get up on stage and perform at myFace Celebrates? - Amazing. - It was, it was, yeah. I used to, I did a lot of performing as a child. I was actually involved in the choirs and I did dance and after high school that stopped and I wasn't performing on stage anymore. But so it took me back to that and it was, I was nervous, but it was so incredible. Like Megan said, just making those connections, knowing that this person knows what it's like, they get it. And just to be able to do that and maybe show other people like, "Hey, I can do this too. If she can do it, why can't I?" - So what advice do you have for parents who've just learned that their child has a facial difference? Tiffany? - I would say, don't get all hung up on the comments that you see on people's, 'cause I know, I've heard from other parents that when they first learned about their child's condition, they went on the internet, of course, to research and then they found social media accounts of people maybe that have that same condition and the comments that people leave are just awful and that's putting it nicely. And I think just, as hard as it is to just kind of brush it off, 'cause it is hard, find that, try to find that community, try to find that us, like those of us that notice, like, "Oh, we will support you." And make connections with organizations like this and I think that's what I'm trying to do with myFace. I think that having that connection is gonna make a world of difference. - In what ways do you think society can better support individuals with facial differences and promote inclusivity? - I think that kind of goes back to like, a combination of showing kids differences, making that just normalized, and like in all children's books and shows and so that it's more accepted and not like this mystery, the curiosity is kind of, like I understand we're, as humans, we're curious, but the more that kids are exposed to these things at home and not just out in the world, it can reduce the stares and questions and things like that. And then hopefully translate also to the media to just also represent people with differences in that way as well, to just normalize it and make it, like the more representation there is, the more normalized it becomes, the less stigmas we have attached and hopefully younger generations with facial differences will have an easier time accepting themselves and feeling confident to just be who they are. You know? Yeah. - So Tiffany, I was just thinking, when a parent is out with a child and another child says something, so your child says something about somebody who has a facial difference or any difference, how or what do you think a parent should do or say to help facilitate that conversation or that? Because I think what I hear too often is parents saying, shh, don't say that, you shouldn't do that. And what that does is almost creates a negative response. So what do you think a parent should do or say to help that? - Yes, I agree with that. And that's the same experiences that I've had is, you know, you hear, shh, don't say that, don't stare. It's not nice to stare. And I agree. I think that that does make it a negative impact on the child 'cause now the child is afraid they're gonna get in trouble. - Right. - And when really they're just curious. And yeah, I think the dialogue needs to start at home and it needs to start putting that idea in their brain. And I think it's like when children ask me, I always say something kind of like, well, you know how like some people have blonde hair and some people have dark hair or some people are born with maybe nine fingers instead of 10. And then I say like, I was born with, and I tell them about Moebius syndrome and what it is. And I just am like straightforward with them. And I think that's a great way for parents to address the situation. And I always recommend the book "Wonder" of course, 'cause I know the author wrote that book because she had that exact situation where she almost like shushed her child and told him not to stare. And then she realized after the fact that that was not the right way to approach that situation. - Yeah, I mean, as a parent, I think, like I understand the, I think they're embarrassed, you know, I understand that desire to just be like, stop, stop, stop. But then, you know, also being somebody with a difference. I think it's just, you know, say hi. Like, you know, like, yeah, aren't they, yeah, aren't they pretty? Or like, yeah, you wanna talk to them? - Yeah, I agree with that. - Not to make it seem like, don't look at them, don't ask questions. But that's also why I think it's so important to just do that, as much exposure to differences at home as possible so that there's less of that when you're out in the world. Like my kids have so many books on differences. And so when we do see things out there, like, you know, my six-year-old just commented like, they have a facial difference, you know? I'm like, yeah, isn't that cool? So just, yeah, just humanizing it, understanding that kids are gonna be curious and that's okay and it probably is gonna make the person feel more uncomfortable to like shush them and make it seem like they're not there than to just like acknowledge them. Like I used to, when people would stare at me when I was younger, like I would just stare back, to try to make them feel as awkward as it felt for me. And then as I got older, when that would happen, I'd just like smile and wave. Try to realize that that probably wasn't the best tactic, even though it felt like, oh, you wanna stare at me? You see how it feels, but just smiling, saying hi. And then they usually smile back and then it's fine. - And I remember just walking away or wanting to turn away and not answer them and then as I got older, especially now, even with little kids 'cause I realize that they still stare, they notice. And like you, Megan, I'll just turn and smile and say hello and sometimes that's just okay, that works. So if you could give one piece of advice to your younger self, what would it be and why? - That's a great question. I think I would tell her to learn how to love yourself, to make time to do things that make you happy because, you know, you can't control what other people say or do. And I truly believe that if you love yourself and if you embrace yourself and your difference that it doesn't matter what anybody says because that's just, you know, people have their own opinions based on their own perceptions of things they've experienced in their own life. And yeah, I think like once you learn to love yourself, it's just what other people say about you doesn't really matter. - Yeah, I would tell little me that nothing about you needs to change for you to love yourself and to pursue the things that you wanna do. But yeah, you are perfect just as you are. - Yes. - Go get 'em. - Yes. - So who do you see when you look in the mirror today? - Badass. - Love it. - Yeah, yeah, I see a warrior. I see somebody who's fought many battles and yet I'm still here and I'm still trying to make the world a kinder place. - Love it. So thank you, Megan and Tiffany. You both are so beautiful and your beauty shines through. I am so grateful to have advocates out there like the two of you because I didn't have, as I mentioned earlier, half the courage to advocate for others when I was younger. So there's no doubt in my mind that you are impacting so many lives, including mine. And so thank you again for sharing your journeys with us. - Thank you. - Yes. - Likewise. - Yeah. - Dina, you are making a lot of change now. So even if you didn't have that when you were younger, you're making up for it now. - Thank you. I'm trying. - Yes, I agree with Megan, yes. Thank you, thank you for having me and you are such an inspiration to me too, Dina, because I see you doing things and I'm just like, that's amazing. So thank you for being you. - Thank you. Now I'm gonna get teary eyed. - Big love fest. - Thank you. Bye. Megan and Tiffany are an inspiration to me and everyone they meet. Everyone has a story and I'm hopeful that by sharing stories like these, 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 paves 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.…

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Advocacy - Be The Change: A Conversation with Melissa Tumblin 45:11

منذ 42 weeks45:11

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This month on the myFace, myStory podcast, Dina Zuckerberg welcomes Melissa Tumblin, a passionate advocate for the hard of hearing and deaf community. Melissa, the founder and Executive Director of Ear Community shares her remarkable journey—from navigating her child's microtia and atresia diagnosis to leading pioneering research efforts and advocating tirelessly for legislation like Ally’s Act. - [Announcer] 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, quickly 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 our 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 Melissa Tumblin. Melissa Tumblin is the founder and Executive Director of the Ear Community Organization and the Microtia and Atresia Support Group on Facebook serving the microtia and atresia community. She's an advocate for the deaf and hard-of-hearing community, and a hearing health activist, and assists on many boards and councils including the NIDCR, National Institutes for Dental and Craniofacial Research; the Friends of the CHHC, Congressional Hearing Health Caucus; and on the advisory board for a biotherapeutics company working on 3D printed regenerated ears. She has presented accredited presentations for audiology, educational organizations, and has also presented at many hearing-device-manufacturer meetings, microtia and atresia surgical conferences, and at the FDA. She launched the Microtia and Atresia Clinic at the Vanderbilt University Medical Center, and champions genetic research for the microtia and atresia community as a co-investigator on a whole genome sequencing genetic research grant with Harvard, Vanderbilt, and the MIT Ford Institute. Melissa wanted the children and adults in her community to have a special day, so she established National Microtia and Atresia Awareness Day taking place every November 9th. She's the recipient of the Family Leadership Award for EHDI Excellence, and the Oticon Medical Advisory Award, including the Legacy Award for helping the microtia community in South Africa. She has over 20 years of experience in marketing, medical devices, and electrosurgical equipment, and holds a Bachelor's Degree in Biology and Psychology from the University of Colorado Boulder. Welcome, Melissa. I really look forward to our conversation. - Thank you, Dina. - Yes. So can you share the personal journey with your daughter, Ally, and take us back to the day she was born and how you found out about her diagnosis? - Of course. Well, first, Dina, thank you so much for having me on the podcast today. It's quite an honor. I appreciate everything you do. And there need to be more Dinas in our world. - So thank you. - Thank you. - So as a parent, you know, we are very excited to start families and have children. And on the day that Ally was born, to our surprise, and I apologize if I get a little emotional, but, you know, I had quad screenings done. I went to all my ultrasounds. I did everything right as a mom carrying a child. And to our surprise, Ally was born missing her right ear. And as a mother, the first thing I did was blame myself. I thought, "Oh no, you know, did I really eat something "or drink something that I wasn't supposed to "that I maybe didn't know about, didn't show up on a label?" Because I was good. And in the delivery room, you know, I delivered Ally via C-section. My husband was the first to see her. And I just remember him coming over to me saying, "You know, there's something a little different "about her ear." And I didn't know what that meant. But when they brought Allie over to me, I saw her sweet, beautiful little smile and her beautiful face. And I was just so happy she was with us finally. And we were just definitely surprised during our delivery. And we did ask our doctors, you know, "Do you know why her ear's missing, or what happened?" And there was silence in the delivery room, which caused a little bit of concern for us. So we didn't understand what had happened. So that was our experience, even though we were so excited that she was here. - So for those who may not know, can you explain what microtia and atresia is and then how rare is it? - Absolutely, so first of all, this is my daughter Ally. - Sweet. - And as you can see, her right ear is missing. And she has a little crooked smile. She has slight craniofacial microsomia because the one jawbone is shorter on the other side. And when children have microtia and atresia, they're often missing ears. And so, when a child is born without an ear, the ear canal is typically missing as well. So that results in hearing loss. And here in the United States, it's a 1 out of every 6,000 births that this happens. - Okay, so it's pretty rare. - It's very rare. And it's rare enough to where it's not typically on most doctors' radar. So oftentimes, families deliver children, and this was our experience as well with the majority of our community. The doctors really just don't know what to tell you. And you feel, you know, a little lost. You know, when you're told something's rare, you think, "Gosh, are we the only family in our state, "you know, with a child like this?" Or, "What doctors can we go to?" And sometimes they just don't often have all the answers. You end up going through a lot of doctor's appointments trying to piece together the puzzle pieces. - So how did this lead you to become an advocate for the hard-of-hearing and deaf community, particularly focusing on your experience with microtia and atresia? - Yeah, so when I was marketing medical device equipment, I was a product manager. And I was over, you know, technical equipment in the OR. And so I learned how to be an advocate for the patient in the OR, and to also help the surgeon, you know, make sure everything was okay. And when I had my own children, I think I was surprised that there wasn't someone there to advocate for me. So this came out in me, and I quickly realized that if we didn't get the answers from our doctors, there must be many other families that are struggling along the way as well. And so, that led into me creating a support group on Facebook. And that support group's called the Microtia and Atresia Support Group. Until this day, it is the largest support group out there. And within a year, we already had 1,000 people join from all over the world. And what was crazy to me is that it was the same stories. It didn't matter if you were from the UK or Mexico or, you know, wherever, it was the same questions. Like, why did this happen? Did I do something during my pregnancy? Will my child be okay? Will they be picked on or bullied? And, you know, what's a BAHA? That's the specific type of hearing device that our community uses. And just all kinds of questions. And I couldn't believe it, that we know so much about the ear and hearing loss in today's world, that all these families have these questions. - Yeah. And I was gonna say there really is that moment when you realize, "Oh, wait, I'm not the only one." - Absolutely, absolutely. - That there's whole community of people that feel the same way, that have the same questions. Yeah. - And also, you know, when I started my support group, Dina, I had to think long and hard before I hit that button to create it that I'm going to put my child out there, you know, to try and help the community. And so I had a lot of thoughts go through my mind before I started that. And here we are today, a nonprofit organization and the popular community for these families to find. Because they all feel lost and alone. - Mm-hmm. - Yeah. - So tell us about the Ear Community Organization that you started. - Yeah, so Ear Community is a nonprofit that serves the microtia and atresia community specifically. And our organization started just after I started the support group, so around 2010. And I was encouraged by some of my now sponsors to create a nonprofit. It would be easier for them to work with me and help because we have events and, you know, we donate hearing devices and try to help those in need within the community. And yeah, I never thought I'd be running a nonprofit, but here we are. - And you do it well from what I've seen. You're doing an amazing job. - Thank you, thank you. - And you have a small staff, right? It's just basically... - Yeah, I'm pretty much a one-woman show, Dina. - That's what I thought. - And I do have one employee that helps me with our events. And yeah, we're very grassroots, but it's where it starts. You know, it's from the passion and in recognition of seeing what your community is lacking and what it needs. That's where it begins. - I always say that. It's like, what does the community need and how do we fill that gap for them? Yeah. - Absolutely. And you wouldn't know unless you're a parent or an individual that is experiencing the struggles along the way. - I agree. So speaking of struggles, what are some of the biggest challenges faced by individuals with microtia and atresia? And how does your community support them? And you've touched a little bit on this, but... - Right, yeah, of course. Thank you for asking. So, with Ear Community, our individuals have different struggles. And you know, they all kind of vary on different levels. So you can have individuals that are missing one or both ears. So some of them can still hear if they have a unilateral hearing loss. And then there are others where both ears are missing. They're completely deaf unless they have a hearing device on. When the ear canals are missing, you know, you have these challenges faced at the very beginning as a baby, when parents have to choose, you know, we're gonna use baby sign or try to adopt sign language and make sure that your child has another means of communication. But in addition to that, some of our individuals in the community also have craniofacial challenges. And so, that's craniofacial microsomia. A lot of times when you have unilateral microtia and atresia, the one side, the jawbone's slightly shorter than the other. That causes many, many tooth extractions for children along the way over the years. As they develop and get older and their bone structure develops and settles, many of them have TMJ, which is temporal mandibular joint syndrome: locking jaws, chewing problems because the teeth aren't aligned. And so this is a whole thing among our community. And most importantly, it's finding confidence within yourself and finding that, you know, self-acceptance and self-love if you don't have that right circle of friends. So there's a whole psychological component to our community as well. In addition to, these children and adults are perfect and beautiful in every way, as far as I see it. They can go on and they can go to college. They can start a business. They can become whatever they want to be in life. But as you know, society and the public can be cruel. And it's a lot of challenges along the way with just finding self-acceptance. - Yeah, absolutely. So how do you approach collaboration with medical professionals, researchers, and other organizations to advance the cause of the deaf and hard-of-hearing community? - Right. Well, specifically this began with microtia and atresia. The atresia part is the hearing loss part for our cause. But originally, you know, I started wanting to bring these families together. So I'd host events. And that's when, you know, the hearing device company saw, "Wow, this is amazing." And as I mentioned, so many of our family members, we feel lost and alone. These families didn't have a place to go. I mean, there are resources out there, but not everyone knows about all the resources. And not everyone specifically caters to certain causes. A lot of times, we have a combined community where we have a lot of individuals that make up the same dissimilar situation. But in our case, people started coming to the events. They found them incredibly priceless and walked away with a newfound self-confidence, a sense of belongingness. So basically, a whole community had been created through our events. And the individuals that attend know that they're in the same situation, the same boat as everyone there. And our events are a day for these children and adults where they're not stared at. Everybody's the same. And it's a place and an opportunity or time to fit in, and at the same time be educated, get all your questions answered. And so at our events, you know, we include fun for the kids. It's a magician, a face painter, a balloon artist, no matter how old you are. I absolutely see adults get tattoos, everything on their faces and enjoy. But we provide lunch. And we have, you know, anaplastologists that make prosthetic ears, and the hearing device companies. We have medical professionals that mingle. It's just a relaxed opportunity for events. And it was much needed. Because, as I mentioned before, these families will end up going through 10, 12 different doctor's appointments, Dina, trying to find the answers. And depending on who you go to, your second or third or fourth or fifth opinion, you know, that you get from the doctors, it can become incredibly overwhelming for these families. And just trying to figure out who do you go to, and what kind of help do you need at what time? - Right. - Yeah. - That's why the community is so important, right? - Community is everything, Dina. - I agree, I agree. - Oh my goodness. - I think about it all the time, yeah. - Yeah, I know you do. - So could you explain what Ally's Act is, the significance of this legislation and your efforts to get this legislation passed? I know you're about to embark next week on it, right? - Yeah, next week, the second week of May is basically our flight in week in DC. So we'll be traveling on, you know, Capitol Hill. And we have a bunch of meetings scheduled and we'll be advocating for our bill. But before I dive into Ally's Act, I just wanted to explain. When I created Ear Community, I wanted to make sure we talked about all options and that families were educated on every single option, not just some, you know, that might've been mentioned in an appointment or something that they just didn't even have a chance to be informed about. And so it's always been our organization's mission to offer everything. So in addition to the hearing devices, I've realized along with that for the past 14 years that I've been running Ear Community, I have watched family after family be denied these hearing devices. - Yeah, it's a huge thing, right? - Yeah, and while others are covered. So it's kind of a mess with private insurance. And sadly, it comes down to oftentimes the representative you have on the phone or, you know, how well the ENT or audiologist office is able to fight with your claim versus if they have to enter an appeal process or not. And so, you know, hearing is everything, Dina. It is a part of everybody's everyday life. It allows you to go on and be independent, have a life, have an income, thrive in your community. And to not have that available when technology does exist is awful. And what's even worse is when private insurers make the final decision over what your doctors say. And so during this month, it's the month of May, which is now National Speech-Language-Hearing Month, which used to be known as Better Hearing and Speech Month. So during the month of May, Ally, my daughter, for a homework assignment in third grade, she was asked to reach out to the community and see if they wanna, you know, participate in like meal drives, cleaning up trash alongside of, you know, the highway or in the neighborhoods, and/or write to a lawmaker about a cause that you care about. And so she wanted to write about our bone-anchored hearing device and how hard it is to get. And so that is how Ally's Act started. We wrote to our congressman, and he wanted to help Ally advocate to hear better. And so he wanted to honor her by naming this federal piece of legislation after her called Ally's Act. And when this bill passes, every state will benefit from the spill services for bone-anchored hearing devices and cochlear implants. And it's an amazing piece of legislation. It has everything in it that is needed. It provides the upgrade for the devices every five years, the accessories, the services behind it with an ENT and audiologist. And when you're ready to have the device implanted surgically, it will cover the cost of surgery as well as the postoperative care appointments and speech therapy. So it's everything that's needed. And it will help children and adults from birth to 64. But this bill's five years old now. - Huge, huge. - Yeah. - Huge piece of legislation that needs to get passed. - It does. - So if people wanna get involved, how would they get involved? - So we do have information on our website under the Ally's Act menu tab. But what is important to know is that people can write and they can ask their congressmen and their senators to please co-sponsor Ally'S Act. And then you put that session's bill number. So for example, this session which is every two years, this session's bill number for the House or Congress member is H.R. 2439. And for the Senate, it's S. 1135. And so these are the members that serve you over your zip code. These are not state level representatives. These are House. These are national lawmakers that are your representatives. You just write a letter; you speak from your heart. You can email them, you can call them. You say, "I have a family member that has this, "or is affected." You don't even have to have microtia and atresia. For example, with Ear Community's Ally's Act covering cochlear implants and bone-anchored hearing devices, this could help an individual who wakes up tomorrow and suddenly they've lost hearing in one ear. And sadly, a regular hearing aid is not gonna be strong enough or help them. You could have someone who was in an accident and had head trauma. There are viruses like meningitis, things that cause people to lose hearing. It can quickly deteriorate and show up when you least expect it. So these devices, BAHA and cochlear implants under Ally's Act, would help those individuals as well. - To our audience, I hope that you're 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're subscribed to our YouTube and Apple Podcast channels and sign up for our mailing list at myface.org/mystory. So Melissa, how do you, because I don't know how you do it as a one-person operation, but how do you balance your role as a mother, advocate, and a leader of the Ear Community? - Yeah, so the whole work-life balance is a constant struggle, I think, for a lot of people. And I just luckily happen to have a lot of energy, Dina. And, you know, with my organization's passion and behind everything we're trying to do, I have an intense passion for helping our community, including my own daughter. And so together, I have learned to fight for her, to fight for others. And I just find a way to get it all done. It's not easy. It does take a lot of hours. I think most people, and you probably know this, Dina, anyone who runs a nonprofit, they're a different kind of individual. It requires a lot of, lot of work. And you're often doing it all on your own. And you may not have enough resources, you know, whether it's funding or staff. And you just do the best you can. And oftentimes, when there is an organization that has those individuals behind it with the very passion, those organizations are incredible. You know, they kinda speak for themselves with what they end up doing. Like for example, after having Ally and wondering if I had done something as a mother, you know, during my pregnancy, I didn't want another mother to ever blame herself, thinking that she must have done something during the pregnancy. And so I embarked with some researchers from MIT, Vanderbilt and Harvard. And yeah, we found new genetic information. And so it is hereditary, it's genetic. It's on chromosome 3 specifically for microtia and craniofacial microsoma. There is increased risk of this happening time after time, even when you have two parents that have a child where the parents are not affected but the child is. And I just wanted to make sure that mothers knew, you didn't do this. You know, depending on where these families are from, there's a lot of ethical and religious struggles that go behind what happens when a child's born. And a lot of these mothers end up struggling. They get the blame of the family, you know, and it's not their fault. It really is a genetic issue. And so we have new information. And our organizations publish those papers. So this is part of that passion that I'm talking about is we can't always wait for things to happen. And sometimes, you do things a certain way that nobody else would do but you. And so it's very important with these organizations that the individuals running them and behind them, it's the true cause that they understand. - I remember, it reminds me of when I joined myFace 10 years ago and I said, "I never wanted any child "to go through what I did growing up." And that's why I wanted to do the work that I'm now doing. So, yeah. - And your work's incredible, Dina. Like I said, we need more Dinas in this world. Because not everyone is going to be brave enough, you know, like you, and have that passion and drive to really want to make that difference. And to put yourself out there, it can be very frightening. You know, I don't know about you. I've talked with other, you know, organizations. And there's trolls. There's people out there that they're just not very nice and they just like to try to ruin a good thing. So thank you for what you do, Dina. - Thank you, and likewise. You're doing amazing stuff too for this community. So thank you. So what advice do you have for parents who've just learned that their child has microtia and atresia? - Right, so when a child is born with microtia and atresia and the family is getting used to their new baby, they're tired and they're scared all at the same time, please know that everything is gonna be okay. Chances are, in the next like six months after or following the birth, that family will be doing their research. And sometimes, they can become the expert on what their child has even over going to see the doctors. Because they will have sifted through information in and out. And they will know exactly, they'll find good information on our website. And it's honestly a wealth of information that is needed. And to just know the steps. You may not be told who to go to at first or what to do. But once you have a child with microtia and atresia, they'll be screened for hearing. The doctors may wanna check their heart and their kidneys. Because the ears, the heart, and kidneys all develop during the same first trimester. - How interesting. - So if there is an issue with one or any of 'em, they're gonna... They should check all three. And then from there, you'll be referred to the right helpful resources, including audiology and ENT. And most importantly, you know, find those organizations that offer what you need, that help that specific community. Because it can be very frightening. And families always worry. Mothers will always worry the most along with the fathers about their children. We just don't want anyone to hurt our beautiful children, pick on them or bully them. And at the same time, they have a lot of medical needs. And it can be very scary, but everything will be okay. It's normal to feel overwhelmed at first. It's normal to feel guilty, even though I hope they don't. And you just have to go through the time process of letting it all sink in. And finding someone else in the community in the same situation is priceless. It is amazing to find another parent with the same child. It's amazing. It's hard to have that same kind of conversation with a doctor no matter how wonderful and amazing they are and how knowledgeable. To have someone in that same boat is amazing. The first time I saw a little girl was when I was looking at preschools for Ally at one point. And I had already been having my events and everything. But this little girl came into the preschool classroom, bilateral microtia and atresia. She had her bone-anchored hearing device on. And she came up to me and said, "Hi, my name is Illy," signing at the same time. And she was all excited. And she said, "Today's my birthday." Dina, for me to see that little girl was what I needed. Even though, you know, I had been bringing people together, there are those moments where you have a conversation with someone and you run into someone at the grocery store or the swimming pool, and they're the same as you, and it's just truly amazing. And I will always remember that day. - I love that story. - Yeah, well that is how important it is to have community. - Absolutely. I always say, there's power in the shared story and knowing you're not alone. And I think about that all the time 'cause I think it's so true. - It is. Well, you realize your child's gonna be okay and you're gonna be okay. And maybe things aren't going to be as bad as you thought because it showed you hope. And hope goes a long way. - Right, absolutely. - Well, and also for the community for these new families too, it's to know that their children will grow up to be just fine. They're gonna be able to go on and do whatever they want in life. They can go to school or, you know, become a doctor, a teacher, a musician. It's gonna be okay. It's just, they can't see into the future. And that can be terrifying. - So true. One of the things we do is support groups for parents. And sometimes, you'll have a parent with a 1-year-old and a 3-year-old and a 10-year-old and a 20-year-old. And the mom with the 3-year-old can't see into the future. But the mom with the 20-year-old can say, "It's gonna be okay. "Your child's gonna be okay." And that is such a comfort for those younger parents who just, they can't see it. You know, and it's understandable why they can't see it. But just to have that kind of support is priceless. Like you said, it's priceless. - Well, and to have those communities, like I said, combined communities or blended communities where a lot overlaps, when you have older individuals to talk to where you can kind of see how they're doing, it's something that it's twofold. It helps that younger family, but at the same time, it gives that older individual the opportunity, whether they're a teenager or an adult, to be a role model, Dina. And that's where it starts, with people willing to share their experiences and meet with others or talk. And it's so important because, again, you cannot get this in a doctor's appointment. - Exactly, exactly. So I have so many different questions to ask, but I think we need to wrap it up soon. But one of the things, because it is something that really bothers me, what are some of, you think, the misconceptions people have about people who have microtia and atresia and could be deaf or hard of hearing? And how can we work to dispel them if we can? - Right, so there are labels in our world. Some can be good and helpful, and some can just have a negative tie to them. And the word disability can be devastating to someone because many people defy disabilities. In the microtia and atresia community, we always say, "We never let little ears or missing ears define us, "and the same with hearing loss." So as I mentioned, sadly, with the public, the public can be cruel. There's this whole idea of, you know, perfection and things on magazine covers and things that really aren't real oftentimes to begin with. But when you have someone who has microtia and atresia, A, they feel alone because they oftentimes will not see someone or find someone just like them. And so they feel different. And different can be a strong word too. It's all really about fitting in and self-acceptance. But, you know, with these individuals in our community, you really just have to find your path. And that takes time. You have to find a great circle of friends, someone who's there to support you. Many of our families offer a safe haven at home for them to go to. But, you know, they really need to just realize they're perfect just the way they are. And that can be hard to accept that. People on the outside may view individuals with microtia as, "Oh look, their ear's missing. "I wonder why." Or, "They have a crooked smile." Or, "What's that device on their head?" You know, like the hearing device. And a lot of these things can attract attention. It can raise questions, whether it's curiosity or, unfortunately, if you encounter someone rude. But it's something that you just have to, sadly, go through, hope for the best, and find your inner strength and how to respond, how to come up with a good explanation or response when these questions start being asked. So parents end up just kinda learning along the way. And then they end up coaching their children, "So this is just how I was born." And honestly, the bottom line is everyone has something going on, Dina. Nobody is symmetrically perfect. No one's perfect to begin with at all. But whatever challenge or difference you may have, it's even better if you can just own it. You know, embrace it and find your way of fitting in, whether it means covering your ear. We don't promote that. We want you to just be proud of yourself, wear your hair up, have that short haircut. But if you want a shaggy haircut to cover the part of your ear, whatever helps you get through that day at school to where you can find happiness, or if you want a surgical procedure done. All of this, if you wanna just accept yourself the way you are, it's all great. You just have to find your way and be strong. And then, like I said, going back to community, there are people you can lean on knowing that you're not alone. - And it's taken me a lot of years to get to the point where I'm comfortable talking about it and sharing it. But I realize how important that is, and also to, to come to the realization that it's not all of me, it's just a piece of me, that I'm so much more than my hearing loss and my cleft lip or any of that. But I think it's important. And, again, that community helps that so much. I mean, I didn't have that community when I was a child. And to see what's happening now, it makes my heart sing. It make me so happy to know that this is out there. - Well, times change. Yeah, times change. And thank God, like you said, today, there are more available resources. We have the internet. You know, there's so many more things. But, you know, everyone's different, Dina, even uniquely and individually. You're going to have individuals in both overlapping communities, no matter what their challenge is. Some have this amazing confidence about themselves. They're doing great. They may even pass on a lot of options that could help them live better quality lives, or they seem to be doing fine. And then there are others. I don't know if it's genetically predisposed, but they struggle. They struggle with accepting themselves, worrying, a lot of stress and anxiety, depression. And again, it goes back to that circle of friends. Who do you have? If you have nobody, unless you're that strong individual, it's gonna be different for each and every child and adult. - And I always say, it takes one. All you need is one friend. If you just have that one friend in your life, one advocate, one supporter. - Absolutely. If you don't mind, I wanted to share something just real quick. So a lot of people, you know, have asked me, like, you know, "How did this start, Melissa? "Like, how did you figure out how to like help "and reach out to this community?" And sometimes you realize, you know, maybe this is a calling or, you know, maybe someone was looking out for me. But I have lived in my neighborhood for 20 years, Dina. And here in Colorado, the very neighborhood that I live in falls within the best school district in the state that offers the best deaf and hard-of-hearing services. - Wow. - I had already been here well before Ally was born, never realizing that someday I'd have a child with hearing loss that would benefit. We actually have families that move in from other states to move into our neighborhood within the school district with deaf and hard-of-hearing children. And the crazy thing is, is in addition to that, at my daughter's elementary school, she at one point in time, there were 11 children in her very elementary school that had microtia and atresia. In fact, there were three children including my daughter in the same grade, three little girls all missing the same ear, wearing the same hearing device. And they all had each other. Now call that living in a crazy bubble. But most people, I've met many adults, 35, 45, 65, and they'll say, "I've never met someone like me." And to have lived here before all of this started with Ally. I've had people point this out to me where at the time I didn't even realize it. But yeah, looking back now, I realize I think someone was looking out for my child and this was meant to be. - Yeah, I was just gonna say, because I say it about myself. Like maybe this is exactly where this journey has led me to exactly where I need to be, doing exactly what I'm doing. And if I didn't have the experience that I had when I was born and growing up, maybe I wouldn't be doing this. And I love, and I'm really passionate about what I do. And I feel like in talking to you, maybe this is exactly where you were meant to be. And, you know, you don't always wish these things on people, but you wouldn't be doing the work you're doing if not for the experience of having Ally. So this is my last question to you. What are your hopes and dreams for Ally, your daughter? - So for Ally, Ally has some additional challenges in addition to her microtia and atresia and her craniofacial microsomia. She's got a little extra going on. My hopes and dreams for Ally are for her to live the happiest life possible. She, quite honestly, is the happiest little girl I know. And I hope that with what I do with Ear Community, that over the years she has seen that it's all okay. You know, there's a lot of people out there just like me. I don't ever want her to feel different or not like something about herself. And I hope that she will have this confidence. She has her moments of confidence. And, you know, I want for her to be able to fit into society. And I don't ever want her to feel or be discriminated against. And I just want her to have the best life that I can help her find. And so, through our organization together, she's the face of Ear Community as you are for myFace. And I just hope that she will always have that with her and always know who she is, and that it's okay. - Well, with a mom like you, I have no doubt that she will have that in all that you're doing. So I thank you for that. - Thank you. - And I wanna, Melissa, thank you for sharing your journey with us. And you have accomplished so much advocating for your daughter and for others. And you hear, never underestimate the power of one. And this is so true. And I see how passionate you are and how tirelessly you work for the community you serve. So no doubt, you will continue to change the world for the better. So thank you. - Aw, thank you, Dina. Thank you for all that you do as well. - Thank you. - Where would people be without organizations like ours? - Mm-hmm, absolutely. - Somebody has to start it somewhere, and it's amazing. I wished I had an Ear Community when Ally was born. - I feel the same way. I wish I had a community like myFace when I was born. So yeah. But here we are, and always moving in the right direction. So thank you. - Absolutely. - Melissa is an inspiration to me and everyone she meets. Everyone has a story. And I'm hopeful that by sharing stories like these, 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 pave 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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Challenging the Status Quo with Musician Austin Halls 38:27

منذ 47 weeks38:27

38:27

On this month's myFace, myStory podcast episode, host Dina Zuckerberg is joined by Austin Halls born with Moebius Syndrome. He has incorporated his psychology degree, his journey, and his music to promote that you can love yourself and overcome any challenge that comes your way. Austin will share his journey to the musician and now model that he is today. - [Announcer] Welcome to My Face, My Story, Voices from the Craniofacial community, with your host, Dina Zuckerberg. - Hello and welcome to My Face, My Story, Voices from the Craniofacial Community. Whether you're watching on YouTube or listening on Apple Podcasts, click subscribe now so you'll never miss a future episode. And if you're a fan of My Face, My Story, rate and review the program on Apple's podcast so we can get our message of inclusivity and empowerment to more people. I'm your host, Dana Zuckerberg, the Director of Family Programs at My Face. I was born with a cleft lip, a hearing loss, and no vision in my left eye. My face, My story 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 Austin Halls. Austin is a positive force changing how people view themselves and the world around them. Austin was born with a rare syndrome called Moebius syndrome making him born with facial paralysis. At the age of 25, he has been through four facial surgeries just to smile. The doctor said he would never be able to eat orally, and at the age of three, he has proven the doctors wrong. He has carried this attitude with every aspect of his life. Austin's strives to incorporate his degree in psychology, his story and his music to promote that you can love yourself and you can overcome any obstacle that comes your way. Austin has been a lover of fashion, style and art since he was young due to him not being able to show expression through his face. Being a professional recording artist, he has since released two albums and a powerful pop dance song called "Disabled" reclaiming the identity of being disabled. Welcome, Austin. - Hello. I'm so happy to be here. - Yes, I'm really looking forward to our conversation. - Me too. - Yes. So for those who may not know, can you tell us about your facial difference and how, well, you've talked about how many surgeries you've had, but tell us a little bit more about your facial difference and what it means. - Yes. So Moebius syndrome is a super rare syndrome. The chances of getting this syndrome are two people out of a million. That's what I say, I'm two in a million. But with this syndrome, it is where the sixth and seventh cranial nerves are under developed. So I cannot move my face really at all. And I also cannot move my eyes laterally. So my face and my eyes are paralyzed. I also cannot blink. So I used to win all the staring contests in my school. - Love that. - But yeah, it's mostly facial paralysis. And just like any other disability, there's a spectrum and I'm very happy to have a more milder face. Some people have missing limbs, some people have tracheas. I had to have a feeding tube, like you said. So it just depends on the person. But facial paralysis is the biggest thing with Moebius syndrome. - Okay. So just outta curiosity, when you sleep at night, are you able to close your eyes? - So people have told me, because obviously I can't know myself, but my eyes close about like 90% of the way. So like, I think when I am, I can't really blink, so my eyes look super, super dry. I have eyedrops on me at all times. But when I am sleeping, people have confirmed I'm not sleeping with my eyes open and I'm happy because that sounds a little scary if I was just sleeping like this. So, yeah. So I think at night, it's closed like 90% of the time. I do wake up and I'm always like, my eyes are always burning, which is like just a classic case of Moebius. - Right, right. So can you share with us your personal journey, what it was like for you growing up? - I feel like my childhood was very, very, very normal. And I hate that word normal because everybody is normal, normal is literally just a made up word. But I feel like, the first three years of my life, I was in the hospital, it was back and forth. I was just really having a hard time adapting to, you know, this world. And after I got my feeding tube out and I kind of became, you know, stable in all medical issues, I kind of just lived the life that everyone else lived. I really didn't talk about my disability. It wasn't really in the forefront. I knew that I was different because I didn't see anyone with a facial difference. So I knew that I did have a disability, but I just lived, you know, my life knowing that I am just Austin. And I'm very happy that I grew up in a small school of 26th people, kindergarten through sixth grade. And it was just a really nice, like, they don't care about my syndrome. They just knew me. And my parents always pushed me to be vocal and to get myself out there. So I feel like a lot of the disability story is parents trying to protect them and almost coddle them where that could kind of limit their, you know, confidence, self-esteem. My parents were complete opposites and threw me out there and said, you're gonna go baby, and you're gonna talk to them and you're gonna do everything for yourself because as an adult, I'm not gonna be there to do everything for you. - Yeah, I feel like in some ways my parents always led me to believe I could do anything I wanted. There were no real limitations to the differences that I had. So I can relate a little bit to that. I also went to a very small school as well, so. So how do you think your journey with Moebius syndrome has shaped the person you have become today and your outlook on life? - I think that I would be a completely different person. There's like a dichotomy of, I was just talking about this, like, there's a dichotomy of like Austin with Moebius and then Austin without Moebius. And I really do believe like Austin with Moebius is a lot nicer, a lot kinder, a lot more empathetic. And I think we really do live a different path of the road that people don't even know is a thing. And I just think being, you know, being a different kind of minority group and going through this world with different experiences, you really learn what it's like to be on different sides of the field. I feel like, like I never want anyone to feel the way that I was growing up, especially if my bullying was, you know, a lot of it was a lot of like microaggression. It was a lot of staring, it was a lot of, you know, questioning my intelligence. And I know that's a huge thing in the facial difference community. We get just undermined in a lot of aspects of our life. So I feel like we have learned how to treat other people nicely, nicer and kinder and just be more empathetic for people. So I think Moebius has given me so many like just tools to be a better human being. And I think about like Austin without Moebius would just be a tornado and just going through life and just not even questioning anything. So I've gained so much like wisdom. I'm only 25, I'm gonna be 26 next a month and I tell people that I'm emotionally like 87 years old. - Right, right. Yeah, I couldn't have said it better myself 'cause all the things you just said I think of like... I mean I think we are more empathetic, we are more aware, we are so much because of experiences of growing up with a craniofacial difference. And then at the same time it's just a part of who we are. There was so much more than a craniofacial difference. - Do you feel that, I know this is your interview, but I would love to know how you feel about, you know, I think a lot of people on social media only see us talking about our identity of being disabled. And it's really funny because people comment and they're like, why are you only talking about your disability? And it's so funny. Do you feel like there's such a, I say dichotomy, said it twice, but like dichotomy of like normal life, you are not really talking about your disability but then your social life, you're only talking about your disability because it's so important. - Right. Well, it's interesting for me, I grew up never talking about it when I was younger. And so it was only, it started maybe in my early twenties like you. And then it really, I think took off in the last 10 years, 10, 15 years, but really in the last 10 years when it came to my face. And then I started going into schools and speaking to kids, which you've done with me as well. And it's sort of opened up my world. And I found the more I shared my story, the more people could relate and especially within the community to say, wait. And then I realized, wait, I'm not the only one that felt that way. Like, I thought I was the only one that felt that way growing up. So it's been, and I don't think I would necessarily go back and change it. Like I feel like because of my experiences, it's made me the person I am today. And I wouldn't be doing the work that I do if not the experiences that I had. So I'm not sure I would change anything. Do I wish sometimes it could have been a little easier? For sure. But I think it's shaped the person I've become. And I have found the more I share my story, the more people even outside the community can sometimes relate to what I'm saying 'cause they have their own insecurities or they have their own experiences. And so yeah, it's been a journey. - I think vulnerability is like the biggest thing. I think just like anyone with a disability, without a disability, like just being vulnerable. Like you said, sharing your story. Like people are, I think just trying to relate to anything nowadays. Like I feel like it's just hard to connect. Everyone's on their phone. You know, with the whole pandemic, I think just interactions socially are very limited. And people are afraid to talk to people that are new, which is crazy. But I think we're all just looking for something to connect with, and you sharing your story and telling people like, it's gonna be okay and this is what I've been through, like it builds so much like community in the disability community. But also too, I feel like my biggest and best friends are literally people that I am not building walls with. And I think we need to kind of let those walls down for people to come in. - Right. Yeah. Which is for me has always been a little bit of a challenge is letting those walls down. But I find when I do, it allows for a whole different kind of relationship with actually feels pretty good when you do that. So I also think when you were just talking, I was thinking about how our stories are, I think in some ways so helpful for parents to see because when they have a three-year-old or a newborn, they can't even see the possibility of what their child can do. And so seeing our stories or hearing those stories, I think is so helpful for the families as well, not just for others. - Yeah, my parents did not know if I was gonna be living a normal, I keep on saying normal, I hate the word normal, but socially normal life. And I think that really like, kind of scared them. My parents had no information about really Moebius at all, and it took two months to diagnose me after I was born. So I think the resources back then were not as amazing as they are now. Every day I'm calling my parents and telling them, like really cool things that's happening and they're just like, Austin, I literally never would've thought that you would even leave and go into college, let alone being a influencer and, you know, changing the world. And it's just, it's really, I'm very grateful. I'm very blessed. - Very cool. So when did you first become interested in music? - I have always been obsessed with music. And I feel like art has always been just something that I've drawn to just because I was not able to show expression in my face. And that raised a lot of questions for people, like, especially how I feel. Like I feel like I'm such a bubbly person, but I feel like people in high school would be like, oh, Austen's like so mad right now. And like, I would be like, no, like I literally just can't show anything on my face. Like people would say like, you should smile more. Like, I don't know why you're not smiling. And I feel like I had to kind of, kind of reroute how I express myself. And I tried to do that with music and I definitely feel like for me, when you hear a song, it is like undeniable. You don't have to question the emotions that are in the song. So I always related to music and I've been singing since I was like three years old. So I just, I've always been into music and I just think it's such a good way to express yourself. - So tell us about your music. What kind of music is it? - Well, I have changed my music for sure. I think as you grow as a human, I think your music has definitely changed. So I got into recording professionally at the age of 15, a baby with Moebius named Easton, their family is amazing. They live in Nashville. And they saw me posting covers and they knew that I just had an urge to become an artist. So they knew Gavin Degrass producer, he is a pop musician who's incredible. And they talked to the producer, they're like, please, we'll pay you. Like, we just really want him to like experience going to the studio for the first time. And the producer was like, no, I don't want any money. He sounds amazing. Like as long as he can go to Nashville, Tennessee, he's coming to my studio and he's gonna record. So I was 15 years old. They told me like, write some songs if you want, like, or if you wanna do covers, but get your butt to Nashville and let's record for like a week. So it was like a huge thing. It was still in high school figuring out like what kind of person I am. Like, I mean, who knows anything in 15. You know, like I thought I knew everything and I really did not know anything. So I wrote a really cheesy, like my first song that I ever wrote so, so cheesy. It was called "Take a Stand." And I was doing a lot of like social media and like advocacy and inspiring other people. Like, everyone was like, you're so inspiring. So I was like, well, I have to write an inspirational song because that's just what I am doing, right. So "Take A Stand," cheesy lyrics, very, very like, you know, like. Yeah, it was very cheesy. I don't know, I'm just also very critical. But it was an amazing experience. I recorded professionally for the first time. I walked to the studio and I was like, this is something that I wanna do for the rest of my life. So I came home and I started writing like actual songs. I started realizing that like, I don't have to just write about being inspirational. I can write about all different aspects of my life. So I was, you know, doing organic instruments, acoustic piano, and I listen to pop music and- - I never heard it before. It's a great story. So speaking of disabled and lighting music, can you tell us about your song "Disabled" that you wrote? - Yes, I cannot, like, I really think that this would be like such a stable, iconic song in my repertoire. And I think when you think about disabled pop songs, well actually I don't even think there is a disabled pop star, sorry, I don't think there is a disabled pop song. I think a lot of songs that are close to talking about like differences in disabled is just like very, like we are the world, like very like sad and like very like community. I don't know, I just think, I think it's a little cheesy. I think it's a little overdone and a little too on the nose. And it's just talking about like, we are together, which is great, I love the message, But I wanted to twist that a little bit and I wanted to reclaim the word disabled because there really is not any other term that talks about disabilities. There's no other umbrella term. So why are we kind of shying away from that term? I feel like any other minority group, they are celebrating their history. They're celebrating their identities, they're celebrating their terms. And the disability community is no different. So, you know, it definitely takes a while to come to terms with your identity and your terms. And I think there's a lot of negative connotation on being disabled in general. Unfortunately, you know, the terminology of disabled is not abled, but we don't have any other terms. And it's just unfortunate that we're shying away from our history and our culture. So I said, you know what I wanna do? I wanna flip the script. I wanna write a pop song being like, I am disabled. So what? I am disabled. And I'm gonna own it. And it's just, I've never heard a kind of dance song reclaiming that identity. And it happened very quickly. I had the idea and I was in the studio that week and we got it done in like a week. So I just didn't even think about it. I was like, this is happening. This is iconic. And it's one of my most streamed songs, which is like really, really cool. - That's great. So most people probably don't even notice. So what made you decide to pursue modeling? - Oh, yes. So modeling is something that I didn't think I was gonna do. I really enjoy taking pictures. I'm really into photography and you know, I love sharing myself on social media just to be authentic and share my kinda world with the other people and kinda share that light for others to feel inspired. And I have also been really a lover of fashion because just like I said about my facial paralysis, I needed ways to express myself. And I know if I dress how I wanna dress, people can kind of get a glimpse of how my personality without trying to explain it to them. So I just started posting like, you know, my outfit pictures and style inspiration and I just got the opportunity kind of sent to me and they were like, you should be a model. You should sign up, you should apply. This is a huge deal. Zebedee is one of the biggest disabled talent agencies. It's a huge London, UK based thing. It's also in LA in New York City. So it's crazy. I never thought that I would be doing something so different from what I wanted to be doing. And I think that's just life is just being open to anything. But yeah, it's really, really, to say that I'm like a assigned model is like insane. . - So what does representation mean to you? - Oh, representation means that we are seeing everyone. I know that is representation, but I just know that like, especially in the disabled community, I never had anyone looking, I couldn't look up to anyone. I didn't see anyone like me in social media, especially being gay and disabled. It's just a lot of layers of diversity and I never saw myself like on movies and media. I didn't know like if that was like something that could be accepted, you know? So I'm just so happy that we're finally seeing people with facial differences not painted as villains because that is literally the only thing that I would see on movies and media. Why are we painted as villains? Anyway, that's another story. I'm happy that we're finally seeing also like the multidimensional aspect of disabilities. Like we are not just, you know, one thing and there's so many types of disabilities that need to be seen. And I'm happy that the social media aspect is showing just more than one type of disability. I think they try to, oh, well we have someone in a wheelchair, so we really checked the mark with that one. I'm like, you really didn't and there's so much more that we need to do. So I think we have a long way to go, to be honest. I think we're just starting on the right foot, but we have so much more to do. - I agree. I feel like we're making a little headway. And also the thing is, I feel like having a craniofacial difference was never really a part of the conversation or part of the, you know, you talked about being in a wheelchair, being on the spectrum, but having a craniofacial difference is, or a facial difference has never been a part of the conversation and part of media representation and all of that. So I feel like it's just beginning to happen and this opportunity that you have to be out there being a model and others in the facial difference community, I think is huge. It's a huge step in the right direction. - I never would've thought that I would be changing people's lives. Like, I feel like you just grow up and you're like just trying to survive and sit and you are trying to find that puzzle piece of like, where I fit in in this world. And like the fact that we're changing the game of like, you can be successful. Just seeing people that are successful and proud, and I think, I love to talk about the dichotomy. I've been really saying dichotomy this episode. I love it, I guess. But the dichotomy of disabled and confidence. I think we've never seen that in the media. We've only seen people like, you know, being inspirational for doing literally things that normal people can do. Don't celebrate disabled people for going to school or going to college. Like that's a normal thing. It does take strength, it does take courage, but applaud me for being vulnerable. Applaud me for going out and above and talking to people about my weaknesses or how differences are better because of it. So I really am so grateful that I can just be a light for other people and just do what I love to do 'cause I know you and I both have very much the same passion. This is not work to us for sure. Like, we love doing what we do and it's crazy that... And do that and also inspire other people. - Right. A hundred percent. And I think about that all the time, how much I like this life that I'm in now. Because, like I said, I spent so much of my childhood trying to hide it and looking away and wanting so badly to fit in and realizing that this is just feels so much better and showing vulnerability, which I said is not so easy for me, but it's just amazing when it happens. And even our conversation right now is just, I'm so enjoying it. So to our audience, I hope you that you're enjoying this episode of My Face, My Story. Whether it's your first time joining us or you've been with us since the beginning, making sure you're subscribed to our YouTube and Apple podcast channel and sign up for our mailing list at myface.org/mystory. So how do you balance advocating for awareness and acceptance of craniofacial differences while pursuing your career in modeling? Because I feel like it's, you're trying to, you're doing it all, which is amazing. - I am very tired. I tried to also do what I love to do. I wish that I had one basket with like one thing and I only did that one thing. But I am very grateful and blessed to have so many different baskets. And I just have been hosting with the world and like whatever. I just know that the universe has me. I have, you know, I'm just ready to go on my journey and not worry about anything and know that the universe will allow me to kind of enjoy the things. I think there is a balance of like doing what you love and also advocating. But everything, I feel like everything I do is like fun and everything I do is not really work to me. Like becoming a social media influencer, like I'm really manifesting that to be my full time. So like, I don't have to work a job that I don't wanna do because I come on here and like, even though it's very early in the morning, I'm just so happy to have the platform. And I think about like, even when I have my days where I'm like, because I'm in Aries and I'm always like trying to do the next thing and I can't just sit for a minute as I'm always just wanting to do something more. But when I have those days that I'm not feeling like I am doing enough, I have to kind of reflect and sit back and realize that like people would kill to have the opportunities and the platforms that I have, and I really am trying to be more grateful about everything, but just especially realize that like, this is not the normal disability story. You know, there's people who don't even feel comfortable going on camera. So I have to really be mindful and appreciative and grateful that we are able to share our stories because some people can't do that. - Yeah, I do feel like when you do what you love, it doesn't feel like work. And then I also can relate to feeling, the times when I feel like I'm not doing enough, I need to do more. I wanna do this, I wanna do that. And then slowing down and realizing, okay, that will happen when it's time, when the moment's right. So I can relate to that. - I'm very into spirituality. Like I really feel like the universe, you know, it doesn't matter what you believe in, but what is right for you will come to you. And like, everything is supposed to happen the way it's supposed to happen. So trying to lose control of everything is like, and just kind of get your hands off of it and just let it happen, like that's even the biggest thing that I, because I wanna do everything all at once now and that is not possible. So I've just been letting- - So as someone who has become a role model for others with craniofacial differences, what messages do you hope to convey to those maybe facing similar challenges in their lives? - I hope to inspire them to just be authentic and to be more vulnerable. I feel like I've received the most amazing people, opportunities and connections when I was not thinking about how people were perceiving me and just being and living in the now. I also have my degree in psychology, so I'm really keen on your thoughts and your feelings about yourself. So I really hope that people can get outta their heads because we're so... I live in this head too and I know that like, it can stop you or it can propel you to greatness. And I think that we need to just stop worrying about what other people think and stop worrying in general and just be. So, I would say just inspiring others to live their authentic lives, to be unapologetically themselves, to take up spaces in rooms that they don't feel comfortable in. And to go to tables that they have never been invited to and sit down and not apologize for anything. - Right. So, great advice. So why is finding and being part of a community like My Face so important to you? - I love My Face so much because I did not realize that there is a facial difference community out there. And I felt like even though I lived right by New York City, there was just not a lot of community that was here. I'm a part of the Moebius Syndrome Foundation. I'm on the board and I love visiting the conferences and helping with the conferences, but they're every two years. So I would have to wait, you know, two years for the best weekend of my life. And I just wanted more community. I wanted to feel more connected with people with facial differences. And I did not realize that there is a social difference community in New York City. And I just found it a couple years ago when I needed it the most. And I've met just like amazing people from My Face. And it just is like really powerful to know that like, you have your friends, you have your high school friends, you have your normal day-to-day life friends, but like, that's a family, that's a support system, that's a community that like, is so like unconditionally loving and like knowing that when you are alone, like you can hit up anyone in that community and there's like such a immense amount of love. So I think just knowing that like you have people that love you and support you and understand truly what it feels like is just, it's really, it's powerful. - Yeah, I agree. So looking ahead, what are your goals and aspirations for the future, both personally and professionally? - Oh gosh, I hate looking into the future. I like, I really try to live in the now and I will have a mental breakdown if I try to plan out things because life is gonna throw some curve balls at you. - I love that. - What I would like, I'm gonna like manifest what I would like put out an album in July, which is so fun. It's like very much about like disability, joy and loving yourself. Lots of modeling gigs. I would love to work with a huge, like fashion brands, like a huge men's fashion brands, to get over, you know, 100K followers hopefully on TikTok. We're almost at 25K. And just really cool opportunities of like speaking and sharing my voice and whatever that means, you know, in that moment. - Love that. So knowing what you know now, what's one thing that you would tell your younger self? - Oh, that's a hard one. - I know. I like it though. I always think about it. - That's a great question. I would tell myself that everything's okay. Literally calm down, sit down, take a minute and take some breaths. Like, literally life is not that deep. We are on a floating rock in space and literally nothing matters. And what you really think is like, people are gonna see me and they're gonna judge me, you're not gonna see that person probably ever again. So stare back at them, be unapologetic. And I am choosing to live the life that I want to live. So just do what you wanna do. Like do what makes you happy and not care what people say. And just know that like, yeah, you're gonna see future Austin in a couple years, like killing it. And that the trials and tribulations that you go through, like are so meant to be and it's only gonna make you stronger for sure. - So what are the three words you think of when you look in the mirror today about you? - Ooh, powerful, energetic, and eclectic. - Love it. So Austin, last question. Where can people find you or follow you on social media and where can they find your music? I think you have a new website, right? - I do. I do have a new website. You can follow me on TikTok @AustinHalls, just Austin Halls. On Instagram, by bio name is in the title, TheAustinHalls. Spotify, iTunes on all music platforms @Austin Halls. Just type in my name and yeah. - Great. So Austin, thank you so much for sharing your journey with us, your story. You have accomplished so much in just 25 years, way more than I did when I was that age. And you do so much to advocate for yourself and for others. And I can't wait to see what the future holds for you, even though we are not looking into the future yet. And no doubt you're going to do so much to help change the world for the better. So thank you. - Thank you. And thank you for letting me share my story on this amazing platform. - Okay, thank you. Austin is an inspiration to me and everyone he meets. Everyone has a story. And I'm hopeful that by sharing stories like his, we can create a kinder world. For more than 70 years, My Face 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 My Face Support groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to My Face, My Story 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 My Face, My Story. Remember, it takes courage to share your story, so be brave and speak out. - Hi, I'm Stephanie Paul, the Executive Director of My Face. My Face 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 My Face, My Story 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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Expanding the Concept of Beauty with Justin Stewart 33:09

منذ 51 weeks33:09

33:09

On this month's myFace, myStory podcast episode, host Dina Zuckerberg is joined by Justin Stewart, who will share his journey from being born with frontonasal dysplasia with a cleft in his nose to being a signed model and the adversity and challenges he faced along the way. Through motivational speaking, he encourages others to be true to themselves and to be brave in this action. - [Announcer] 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 to the You'll never miss a future episode. And if you're a fan of "myFace, myStory" rate and review the program on Apple Podcast 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 Justin Stewart. Renowned as a signed model and influential figure in the world of social media, Justin has left an indelible mark through his impactful participation in numerous viral campaigns, amassing over five million views across various platforms. His portfolio boast features in esteemed publications such as Vogue Magazine, Truly, VH1, "Good Morning America," and "ABC News." With a career adorned by collaborations with prominent brands like Nike, TELFAR, Google, and Rick Moss Maybach Music, Justin has become a recognizable face in the industry. Beyond the glamour of modeling, Justin's platform is a beacon for advocating inclusivity and representation, especially for the craniofacial community. His relentless efforts strive to reshape the modeling and entertainment landscape, emphasizing the importance of diversity and empowerment. Through his work, Justin stands as a beacon of inspiration and change, aiming to pave the way for more inclusive and diverse industry. Welcome, Justin. I really look forward to our conversation. - Good to see you. - Hi, Dina. Thank you so much for having me. - Yes. So I'm looking forward to our conversation. Can you share about your facial differences for those who may not know, and tell us about how many surgeries you've had. - Yeah, so I've had two surgeries in my life. I have frontonasal dysplasia, which is a form of cleft. So I'm in the cleft family. - Okay. - But yeah, I've had two surgeries. One when I was six months old, and the other one was when I was about 13, 12 to 13 years old. Of course, I don't remember the one when I was six months, but the one when I was about 12 or 13, I can remember them taking cartilage from my left ear and doing some reconstructive work with that from my nose. - Okay, and how has growing up with a facial difference affected you? Give us a glimpse into your life growing up. - I mean, it was definitely challenging being one of the only in my neighborhood and where I played sports at and where my family resided. I was always the standout. I didn't look like anybody else or resemble anyone, so I always felt like I just stood out where I was the shadow. So growing up, trying to navigate that and trying to figure out who I was and who I wanted to be was definitely a challenge for sure. - I can relate to that for sure. So what was school like for you? I know you dealt with a lot of bullying. - Yeah, school was rough. I mean, kids can be cruel. I feel like I had a few friends throughout my life that were very supportive of me, and we're still friends to this day as me as an adult. But just the overall general, like school was rough. It was really rough just dealing with kids, asking questions, kids being ignorant, kids saying mean things. It was rough, but I had a great support system at home. I had a great support system with my friends. And I played sports. Like, that was really, really big for me in my development as well. So it was rough, but we made it through. - I always say when I talk to the kids when I go into school, they always say that all do you need is one or two good friends to get through it all. So yeah, for sure. So what or who gave you the strength to get through all that bullying growing up? - I think that's an interesting question. I feel like for me, I knew that all of these things were happening to me for a reason, and I just didn't know what the reason was yet. Like, I knew I was here for a purpose. I knew I would be doing like some really big things in life. I knew that at a very young age, but I just didn't know what. And that was something that really inspired me and kept me motivated and kept me inspired to keep going and keep pushing forward, just that idea of, I don't know what it is or what that reason may be, but I know I have it, and I'm just gonna just keep pushing forward and keep striving for greatness, essentially. And like I said before, I had a great support system. Like my older brother is my hero, my oldest brother, Donald, he's my hero. I have a twin brother named Jordan, was not cleft affected, but we're twins. So we were very, very close growing up. Literally my best friend. So without him I wouldn't be here either. And my little sister Victoria was major when it came to that as well, because I stepped in a role as a older brother. So I knew I had somebody that was looking after me as well. And of course, I have my parents, like I have a great support system between my mom, my dad, my uncles, my grandfather, somebody that I truly, truly admire, my grandfather. So I had the whole package when it came to support. - Amazing. Yeah. I always say that my family was my greatest support too. So speaking of big things, what made you decide to be a model? How did you get into it? - That story is really crazy in itself. I was in high school. I think I was a senior in high school and kind of segueing into college, my freshman year of college. And I was just sharing a lot of things on social media. Like, school was really hard, didn't really have a sense of community, and I went on social media essentially looking for that. Like, my whole goal was sharing my story on social media. Wasn't even to be an influencer, it was just to find people that understood what I was going through and just trying to connect with them. And that's how I pretty much started on social media. And a few posts caught a lot of attention. And then that's when I got into sharing more and being an advocate, being a cleft advocate, being an anti-bullying advocate was something that was very, very important to me in the early stages of my career. And from then with all the influencing work came these modeling opportunities that I never dreamed would be possible, never a million years would I have thought that, you know, I could do any of these things. I've never like seen anybody in the craniofacial community in movies, on TV, on the billboards in Times Square, so I just never thought it was possible. And I knew of like athletes or just public figures that had cleft or had a craniofacial difference, but they weren't people that we could touch. They weren't people that were reachable to us. So it was definitely a thing where it was just, like, a lot of nerves, like not really having anybody to talk to about that aspect either that was already in the industry that dealt with some similar things. But I definitely took the leap of faith, and we're here now. And I can just, you know, shoutout my agency for believing in me and taking a chance on me and seeing something that I didn't even see in myself at the time. - Right, so what was it like for you when you did your first modeling job? - My first modeling job was actually really cool. My first experience on any set, I would say, it was probably like the experience that you would probably want to hear about it. It was just a lot of nerves. Like, I was really scared. And I remember like asking everybody in my family, like, I needed somebody to come with me because I didn't wanna go by myself, but everybody had something going on in that particular day. So I had to go by myself, which I didn't want to do. And I remember just being there alone, and everybody had like a friend there, or like a family member there, and I was like the only one that was by themselves. And I remember being on set and it was just a lot of lights, a lot of cameras, like, a lot of direction and movement. And it was really hard, it was really hard. My anxiety was through the roof, and it was challenging, it was very challenging. And I remember I met somebody there that day, one of my biggest mentors in my career. Her name's Christiana. And I remember walking in, and I remember seeing her not knowing who she was. She's a very renowned model, been on "America's Next Top Model," like she is big time. And I remember just seeing her not knowing anything about her, not knowing who she was. And she just made the experience so much better for me. Like, I was so anxious, so nervous, so just out of it. And she spoke to me, we talked, she gave me a lot of pointers, she gave me a lot of great advice. And she just overall just made the experience so much better for me, and we ended up keeping in touch. Like, I remember leaving there. I remember calling my mom after I left and I was like, "Listen, I will never, ever, ever do this again in life." Like, that was a conversation I had with my mom at the time. But I can remember leaving and Christiana kept in touch with me, like I went back to school, did some things down there in college, and she kept in touch with me all the way and was very supportive of me with my advocacy work and my modeling career as well. And she's one of the reasons why I decided to stick with it and continue to pursue a career. - Right, so what do you love most about modeling now that you've done it? - Honestly, I love everything. Like, the best part would probably be seeing the creator's visions come to life. Like, I'm such a small part in creating the vision. Like, there's so many things that go into, you know, creating something meaningful or just creating art. Like I'm just the talent, I'm just one piece of it. There's so many other things that go into it. And just seeing all those things come together to make something out of art is just really incredible to me. - And do you have a sense, like, what has been the response that you have received from people as someone who's a model in the industry? - I've received a lot of good responses. I received some negative responses as well, but that's what comes with it, you know, like, not everybody's gonna see the vision and that's on them. The vision is for me. God placed it on me. So if people don't understand, and people don't see it and recognize it, I don't fault them for it. I don't, you know, put my head down. I just continue to move forward and continue to collaborate and support the people that choose to do the same with me. - Do you think modeling has helped shape the person you are today? - 100%, I don't think I would be the person that I am today if it wasn't for this journey that I'm on. I've met so many people, so many people, including yourself. I don't even think we would have been able to connect if it wasn't for this journey that I've been on as well. So I've just been able to meet so many people and build so many relationships that have truly helped me and inspired me, not just in my professional life and my career, but my personal life as a cleft-affected adult as well, you know? And I feel like that's something that normally gets forgotten about. Like, I am a model. I've done some really great things. I've accomplished some goals. I've been in the spotlight for our community, but I do think my personal cleft-affected story does get forgotten about, and that's something that I still have to just cherish and take care of and uplift as well. So I would say no, I wouldn't be the person that I am today if it wasn't for this journey that I've been on in my modeling career. - I say that all the time when I do the work that I do about how I wouldn't be the person I am today if not for the journey that I've been on. So I can totally relate to that. To our audience, I hope you're 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 from mailing list at myface.org/mystory. So Justin, how do you think the outside world, popular media perceives facial differences? And has that ever affected how you see yourself with regards to your beauty or who you are? - I think that's a great question. I've had this conversation with somebody the other day. We were talking about just representation and inclusivity as a whole within not just the modeling industry but the entertainment industry. And I think we've came a long way. I really do. I think we're moving in the right direction. I think things have kind of stalled out a little bit when it comes to inclusivity and representation, and not just the facial difference community, but the plus size community as well and just the difference community overall. Just anybody with a difference, anybody that looks different. But like I said, I think we've made some meaningful steps. There are a lot of people out here in the modeling world, the acting industry and just social media that have been given the spotlight and given the chance to share their story and showcase their skills because we have some very, very talented people that have a lot to offer that are in our industry. So, like I said, I think we've made some meaningful steps, some leaps and bounds, but I do think that there's a lot of work to do. - Right, which that was my next question, are we're making headway? So I agree. I think there's a lot of work to be done. But I feel like in the last, I don't know, three, four years even, there has been a, it's changing and I think for the better. - Yeah, I think it started around like that 2020 to 2021 period where we just saw like, just a huge increase of attention being brought to, again, not just our community, but all these communities. And we have some really, really great people. It's interesting that you ask that question though. And I always have to give credit to the plus size community because they were the ones that really started this thing of people that were different that just didn't care, and they wanted to be seen and they wanted to be heard. And that plus size movement that started, I don't think we would be here if it wasn't for them, honestly speaking. And I just want to give them their flowers whenever it comes time to speak about representation and inclusivity and tokenism and all those kinds of things that we're dealing with in the industry right now. - Are there others that you know of in the craniofacial community who are doing what you're doing, modeling, and have you come across it? - I've met a few. I've met a few. I don't want to name drop 'cause I don't wanna forget anybody. - No, it's fine. - But I've met some really great people. And it's a great feeling to know that I've been able to inspire others to start their journey as well. And that's something that, again, like I couldn't even have dreamed of, was somebody saying like, "I'm starting this because of you." Like "Me, little me." - Right, right. - So, it's very just heartwarming, and it keeps me grounded and it keeps me humble, and it's a constant reminder on this journey to keep going and to keep pushing forward because it is tough, it is hard. And it does get discouraging at times. It does get lonely sometimes, but to know that, you know, I'm not alone on this journey means everything to me. - Right, so shifting a little bit, why is advocacy so important to you? - I think advocacy is important to me because I just wish I would've had, you know, the Wonder Project at my school when I was in the third grade, or somebody just around that just looked like me, that could pull me to the side and just tell me like, "Nah, you're gonna be all right, and you're not the only one that's going through this." When I was growing up, I literally had like no idea that there were other people out there that looked like me or resembled me or just went through some of the similar things. Like, I grew up in pretty much the same neighborhood all my life, same block, same kids. So I'm around like the same people. And social media wasn't as big as it is now when I was coming up. Like it was around, but I didn't have access to it as much. So advocacy is just important to me because I know that there's kids out there, there's even young adults, adults out there that we're all going through the same thing. And sharing our story is just so important because it's just a reminder that we're not alone in this journey, and we can all come together, you know? - Yeah, it's really powerful when you realize that there's others that have been on that same journey. I spent so much of my childhood thinking I was the only one who had certain experiences. And then as I've gotten older and started to meet others in the craniofacial community, I realized, wow, I wasn't the only one that felt that way or that had those experiences. So it is really empowering, so thank you for your advocacy. So speaking of social media, you are a influencer and have a big following. What are the messages you are trying to get out of there? And what do you want people to know when you're posting and sharing your story? - I think that's a good question as well. I feel like I'm on an interesting journey right now, and I have a interesting relationship when it comes to social media. I feel like when I first started, I was just doing a lot of advocacy work and sharing my story and just really just trying to put myself out there to be a advocate and to meet people and to connect with followers, connect with the community, connect with people outside of my community. Like I was just all in, you know? And now a few years down the line, just dealing with life, growing as a young adult, like, not that I've gotten away from it, but I just really care more about the authenticity of my work and my craft and what I choose to put out there. I think like just the influencer world can get really performative at times, and a lot of stuff isn't really authentic and realistic. And I think I had like this tug-and-pull relationship. Like, well, do I post stuff that I really and truly care about that I align with, me personally? Or do I continue to feed, you know, my audience things that they would like and what they would enjoy? Like, would they enjoy the things that I truly like, you know? So I really have like this interesting relationship with social media right now, but I feel like I've been trying my best to just stay as real and as authentic as possible. And I don't think I was always like that early on in my career. I think this is like the most, like the things that I've been posting about now and sharing now I feel like this is like the realest and the most authentic Justin that my audience has ever seen, especially with me letting them in with other aspects of my life as well outside of advocacy and the craniofacial community, because that's just a fraction of who I am as a person. Like, I do have cleft, I do identify with the community, but that isn't my entire identity. Like, now I'm an educator, I'm a brother, I'm a son, I coach basketball, I'm a college basketball coach. So like, there's so many other things that I have to offer and I can give to the world, and I'm just trying to find ways where I can share that and still be true and authentic to myself. - So speaking of that, that was the next segment I was gonna go into. So you have a passion for basketball and are basketball coach. Tell us about that. - Well, I started off really young. My father has been a basketball coach my entire life. And he's somebody that I will always look up to. Like, the men in my life, I just have great men in my life overall. Like my dad, my grandfather, my uncle Steven, my uncle Keith, like those are my heroes, like, my heroes. I was blessed to have really, really strong men in my life. But back to my dad in particular, like I said, he was a basketball coach all my life. So I've been around basketball just from the beginning. And I can just remember just being at high school games and being at recruiting visits when he would be recruiting kids and I would have to tag along, him doing home study with kids, working with kids. So I've just always been around basketball, I've always been around education, I've always been around the youth. And I guess that says a lot about the path that I chose for myself, 'cause of following in the same footsteps. So yeah, my father's just, he's great, man, he's great. And like I say, he is always been a coach. And I'm glad that I can follow in his footsteps a little bit because I mean, as sons, like, he has three sons, and you know, as sons looking up to their dads, all you wanna do is be like your dad, you know? So it feels good to follow in his footsteps and do something positive, you know? - Nice. So you've also worked in education, as you mentioned. What is it like working with kids, and how have they reacted to you having a facial difference? - I've had some interesting conversations, and it's led to me being able to be an advocate and to educate. I don't know if, like, in the building that I work in particular, like, I don't think they've had anybody cleft-affected ever in that building, you know? So I look at it as an opportunity. Like if I get questions or I get a comment, I don't really look at it in a negative way. I look at it as an opportunity to be an advocate and to educate these kids, because I know when they leave here, like they'll remember me and they might see somebody one day that resembles me or has cleft or just anything in general. And maybe they'll think back to those conversations that we had about how treating people with respect is important because you never know, you know? - Right, right. Well, we definitely, I know you wanna do the Wonder Project. We definitely need to make that happen, 'cause I know we've been talking about it. So have you found acceptance in your life, or is it a lifelong journey, would you say? - I feel like it's a lifelong journey. I remember the first time we met, the first time we met was a really heavy day for me because that was the first time, and I remember we talked about this, but that was the first time I was actually in a room with people that were all cleft affected. And here I am at, what, 22, 23 at the time. And you would've thought I'd been in a couple rooms considering all the advocacy work that I've done and all the things that I've been able to do. But for me, that was my first time ever. - Wow, yeah. - So I was just dealing with all these emotions, positive, negative, just flowing with all these different emotions that I never necessarily felt before and had to process that. And that was, what, just a year ago, a year and a half ago. - Right. - I think it'll always be a constant journey of acceptance. When it comes to my career, like my career is solely based upon my appearance and my performance. So again, it can get negative, and it can get discouraging at times, and I just have to continue to push through and move forward. I don't think there's, like, I don't know if I'll ever get to a point where I'm just fully content and fully happy and just fully just, I'm here and this is great and everything's perfect. I don't think that'll ever be something for me personally. I think it's just a constant journey of just watering my plants and continuing to love myself and just taking it day by day. - I love that image, and I'm not sure, honestly, there's anybody out there that's perfectly happy and content, and I think that's life. It has its ups and downs, it has everything. So I think, yeah. So what are your hopes and dreams for the future? - My hopes and dreams for myself or just in general? - I think for yourself. Or the industry that you're in or, yeah. - I would say the hopes and dreams for myself would just be just to continue to strive and to actually become the best version of myself, in whatever that may be. I'm working in an industry where things aren't really consistent and there's a lot of ups and downs. So if that's not the avenue, then I would have to be okay with that, you know? - Right. - It would be great to say, I would achieve all of those goals and be a full-time model and work with all the brands and the companies in the world. But just like we spoke about before, like, that is just a fraction of who I am. So I would just say to be the best version of myself, in whatever God and the universe see that to be, I would want to be that, you know? - I love that. So knowing what you know now, what is one thing you would tell your younger self going back in time? - Well, one thing I would tell my younger self would be, "You were right." "You were right, you knew you would be doing something special. Way to not listen to the haters and the doubters." I would pat myself on the back for that. But I would also say just stay patient and trust the process and trust the journey. Like, I feel like I'm a very goal-oriented person. Like, I have like a lot of goals. Like I'll write 'em down, I'll put them on my wall, just goals and things that I wanna achieve. But I feel like the journey and the process, like I'll miss that along the way sometimes because I'm so focused on the end result, and I'll forget about the entire journey, and I won't cherish and take in the entire journey in the process and what I'm supposed to learn from that. I'll lose sight of that sometimes. So I would tell my younger self, like to continue to trust the process and fall in love with that and fall in love with the journey, and your goals, they'll take care of themselves. - Right. That's great. So who do you see when you look in the mirror today? - I see somebody who's come a very long way. I'm not the person that I was a few years ago. I'm not the same person I was a few months ago, you know? So I would see somebody who's constantly changing, constantly evolving, constantly growing and open to you trying new things and being just better. And I like what I see in the mirror. - Love that. So where can people follow you on social media or anywhere? - Everybody can get at me on Instagram and TikTok @JustinStewart, full. - Great. So Justin, thank you for sharing your journey with us and for being a trailblazer in a career that is hard for anyone with or without a difference to succeed in. You are not only a model but also a role model for so many in the craniofacial community and beyond. So keep doing what you're doing and thank you. - Thank you so much, Dina. I appreciate you, always. - Yes. So Justin is an inspiration to me and everyone he meets. 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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Rebuilding a Life After Facial Cancer: A Conversation with Kathleen Watt 42:10

منذ 1 year42:10

42:10

On this month's myFace, myStory podcast episode, host Dina Zuckerberg is joined by Kathleen Watt, an opera singer on some of the biggest stages whose life changed when she was diagnosed with bone cancer in her face. She will speak about her memoir, REARRANGED where she writes about coming face-to-face with mortality, disfigurement, having her face reconstructed, and the meaning and uses of beauty. REARRANGED is a tale of letting go to hold on, of putting old pieces to new uses—and of the unlikely arrangements that make it all work out. - [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 that we can get our 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 cranial facial community and with others. Today I will be joined by Kathleen Watt. Kathleen Watt sang principal roles with various opera companies and in the extra chorus of New York's Metropolitan Opera, before her singing career was severely ended by osteogenic sarcoma, bone cancer in her face. She recently wrote her memoir "Rearranged," which tells of leaving the operatic stage for a starring role opposite the Big C. Bone cancer in her cheek, ended her career and brought her face to face with mortality, disfigurement, the meaning and uses of beauty, and a lot of leftover pieces. "Rearranged" is a story about letting go to hold on, of putting old pieces to new uses, and of the unlikely arrangements that make it all work out. Since retiring from performing, she has written frequently on performing arts and cultural issues, including features, profiles, and essays. As a writer and cancer survivor, Kathleen has collaborated with doctors and artists on a range of projects, including an appearance on a BBC Four series about facial disfigurement. Formerly an assistant art director in publishing, Kathleen attended Rhode Island School of Design, Brown University, and Brigham Young University, earning a double BFA in art and music, with postgraduate studies in opera performance at Boston University. Kathleen now writes from a windswept hay farm in the Catskill Mountains of New York, where she resides with her partner, 10 chickens, three dogs, and on occasion her two grown stepchildren. Welcome, Kathleen. I really look forward to our conversation. - Thank you, Dina. It's a delight to be here. - Yes. So why and how did you become an opera singer? - Well, my mother was a classically trained singer, so I grew up with the sound of that kind of a voice in my ear early on. But I personally, I took a long way around. I went to several different schools, as you just recounted. I got a BFA in art and a minor in voice, but I chose to prioritize singing, because it has, you know, supposedly it has an expiration date. And also with serious singing, I had to come to the grudging understanding that the only way to get paid was to get hired by a company, so that meant opera. But once I got into it, I was really hooked on grand opera, One of the things I liked about it, besides the comradery of other musicians and the music and the lights and the costumes and everything, was the way that operatic singing is almost like an athletic activity. It's full-bodied, muscular and musical and lyrical all at the same time. So I really enjoyed all of that, so I was hooked. So I had to get a job. - Right, right. I fell in love, the first opera I ever saw was "Madam Butterfly," and I fell in love with the opera after that. - Oh, that's one that will make you fall in love. - Yes. So take us back to the day when you learned that you had bone cancer in the face. What was going through your mind? - Well, my tumor was identified by my dentist, as often happens with head and neck cancers or serious head and neck conditions. I asked my partner, Evie, to help me identify a bump in the gum line over my back teeth, and we agreed that I should ask my dentist about it. But he sent me to an endodontist who thought it might be a condition requiring a root canal, and then he sent me to an oral surgeon, who thought it might deserve a biopsy. So by March, I had my diagnosis, and I first heard the news on my answering machine. It's not something you're ever really prepared for, even if you've seen it in others and you know it might be coming. We took one step at a time as it was revealed to us, what else can you do? And I had surgery in April, which coincidentally I had my surgery in April on the very same day that I was scheduled to audition with the Met for my full-time position. So it was very karmic in that way. - So as you said, you were an opera singer and then you auditioned for roles. How did preparing for your surgery, especially your first surgery, how have that experience of auditioning for the offer, how did that experience help you in your medical journey, if it did indeed, helped you? - Yeah, that's a great question. And it came upon me, the answer to your question came upon me as I was writing. As an opera singer, of course, my diagnosis was cataclysmic. It put my career plans in jeopardy, and my instrument, that is my body, was at risk. And it was my whole reason for being. At the moment I was in mid-career, the diagnosis came right in the middle of the operatic season. So I was more or less in performer mode as we took on the cancer. And I remained, so actually, for a couple of years. And my very first questions when I heard about the diagnosis, or when I first got my tests and I knew what was in the future for me, was could I make it back to the season? Could I make it back and have enough time to practice and be ready for the season? I would miss the second half of the current season, but could I get back for this for the next season, you know? So I was in performer mode, and in retrospect, as I was writing, I realized that I kind of, I prepped for my role as a patient in much the same way that I might prepare to sing a character role. In fact, right from the outset, because I learned of my hiring at the Met by way of an answering machine message, which the maestro told me that I had missed my first rehearsal, which nobody told me about, and I would be fired if I missed the next one. - Right. - Similarly, I learned about my cancer on an answering, a telephone answering machine message, it's so ancient, I can't even remember how to say it. But this time from my oral specialist, and he was saying it never was a dental problem, that was a waste of time, it's cancer, and I might die if I don't find a head and neck surgeon. So, they were two very, you know, distinctly different embarkations on a big adventure, so. - Right, right. - And then I basically took on the responsibility of the role I had to play as a patient and learned everything I could about it, and attended coachings, consultations, and then I showed up for the downbeat. And then once the curtain is up, just as in a performance, there's no way to go but forward. - Right, right. - Go on. - That's what you had to do, right? You had to go forward through the whole thing. - Yeah, yeah. And in retrospect, I really think a lot of my training as a singer gave me resources that I would come to rely upon. And it's not unique to singing, but anybody who becomes a, I think anybody who becomes a hostage of the hospital situation in, you know, whatever their situation is, brings to it all of their resources. I mean, I had physical fitness and patience, I think, as a long time student of classical voice, but whatever it is, you have a lot of the resources within you to meet and sustain the ordeal that seems like something completely novel. Until you recognize that you bring your whole self to it, and very often you're more equal to it than you expect. - Right. So what or who gave you strength to get through, I believe it's 32 surgeries, to get to where you are today? - Yeah, 32 with general anesthesia, not counting the little ones. - Okay. - Well, I have to credit my support system. Of course, there's nothing more powerful or sustaining than a strong support system. I had my siblings, and my primary caregiver was my partner, Evie, who was absolutely essential. And she was never able to breathe easy until the whole thing was over. And we never knew how long it was going to be. So we were kind of in an isometric holding pattern for a decade. And she as a mate, and the role she played, the role of the caregiver, are actually major characters in the book. But they all showed up, my siblings and my partner, and because they kept showing up, I felt I ought to make it worth their while, I guess. It gave me an incentive to keep showing up. If this was worth it to them, I better make it worth it for them to come. And I will add to a certain extent that we entertained each other. I mean, nothing is more important than a committed support system. But I will also add that we should never underestimate the value of humor. - Absolutely. - And there's science behind that now too. As I understand it, nothing releases the brain's healing hormones, the endorphins, the dopamine, that everybody's always trying to get from somewhere, there's nothing that releases it like a good joke. Cracking good laugh. And that's something you can do for yourself. Have you found that? - I love humor and that is something, yes. And I also think that's what I loved when I was reading your memoir about how you talk about those moments that like seems so crazy or hard, and then you're talking about the humor that you brought into that. And I love that. And also, when you're talking about caregivers or having that support, I always say like, I remember my mother being there for every surgery I had, and I talk to parents today and they talk about how they worry so much, and I say, "You know what? Your child's gonna remember that you advocated hard for them." And I still remember that. And I think that's, I'm sure that's what they had to advocate I'm sure all the time for you as well, especially because you couldn't communicate so much. - Yeah, well, that's a perfect example of your mother showing up, of how your life is not on hold. While you're there, you're having your life. So during that time, as difficult as it may have been, and you would not choose it or we should on anyone, but in that time, you're building this relationship with your mom, and yourself, in all kinds of ways. I do think that it's self-defeating to think of serious illness as you know, something that you have to just get through or you have to put everything on hold, and then pick up again after it's over. I think you miss your opportunity there. - Right. I agree. So for me, I was born with my facial differences. It's what I've always known. I imagine that experience would be so different for you having your face reconstructed and seeing how it changed your appearance. Can you talk about that? - Well, you know, Dina, I'm pretty much okay about it now, but I've been watching you and others, you know, in your field for quite a while. And I have to admit, I don't wear it as smoothly as you do. I just, you know, I used to avoid mirrors, and you know, picture windows and overturned spoons, you know, I just, so at least that part has improved. But I admit, you know, I shied away from Zooms or FaceTime or Skype or anything, even during the pandemic. And if it weren't for this book forcing me to get out there, I, you know, I've had to, you know, make my peace with it. And even now, you can see, I use my strategies, you know? Trying to look casual as I hold up the bad side of my face, you know? - Listen, I don't think anybody loves to see themselves on camera, even the most beautiful people, - Exactly. - I'm not sure love it either, and can find the flaws. So, yeah. And I still don't like watching myself, so yeah. - Yeah, yeah. Truth to tell, I was worried about it before I had my, you know, acquired deformity. I think it's quite different, as you say, in the fact that I think maybe it's, you know, it's not something I've been able to develop into, as you have. I mean, I'm a lot older than you are, so probably I've had as long to develop into my deformity as you had from birth. But, you know, it's silly, because it's, as you say, it's not silly, but it's an obstacle that I place in my own way, I can only speak for myself, that I need not, because the real cost, and nevermind what it indicates about me, is inside. You know, you have much more self-assurance than I do, and I still have to work on it. I'm not as free as you are, you know, I- - Well, it took me a lot of years to get to this point. This did not, I promise you, did not happen overnight. And if you told me 15 years ago that I would be hosting a podcast or going into school, I would've said you were absolutely crazy. That would never happen. And so I guess you never know what life has in store for you. And it definitely, I mean, I'm sure doing this is making you grow in ways that you never thought that you could, probably five years ago or 10 years ago, so. - Never, never. Never would've imagined it, never could have planned it. So, keep working at it and I can't say that I regret any of it, you know? - Right. To our audience, I hope that you're 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 channel and Apple Podcasts channels and sign up for our mailing list at myface.org/mystory. So let's talk about your book. Why did you decide to write your memoir, "Rearranged?" - Well, why did I write it? I wanted to write, that's why I did. And to be honest, Dina, I really never, I really, I took field notes along the way and I had a lot of them, because my support team saved all my notes, including from my scratch pad when I was in ICU psychosis and couldn't talk. So I had my notes, but I never really wanted to write a cancer story, even a survivor's story. I just didn't want to do that. But I wanted to do more writing. And, you know, cancer was the biggest, most dramatic thing that had ever happened to me. So, I decided to stitch together all those notes that I took. And I've found that it's not, people ask me, you know, what was it like giving up singing. It has not been an empty crater, you know, it's been filled by, I have thought of it even as the persistent joy of singing, albeit with a different voice. So that's one reason why I wrote the book, is to use my new voice. And I think the byproduct of a very selfish, you know, that's kind of, I think of it as sort of a, you know, well, an artist always wants to perform, and maybe I have an artist's spirit, I don't know, but it seems a little self-seeking to me to just, you know, use it because I wanna write about something, so I write about myself. But it's been gratifying to me having done it, to see that just having stuck it out can be an inspiration or an encouragement, and in some ways living proof, you know, to anyone facing this or any other battle of a lifetime. You know, whatever form it may take, you know, yours or mine, or an internal kind of disorder or a challenge of any kind, can be surmounted, putting one foot in front of the other, and believing in the best, I think. - So, was it cathartic? - That's why I wrote the book. - So was it cathartic for you to write the book? - You know, it was more than I expected. More than I expected, because from a writing perspective, it was a joy, I felt, and when I was unable to return to singing, a friend, became a dear friend, gave me an opportunity to begin writing for the performing arts. So I had that niche, and I had a start at it, and I'd had some practice with it. And this was a big, rich project, but it had been more than 20 years. And I'd written all these notes, and I was extremely familiar with the story. I thought I, you know, I thought I'd moved on. Well, I had, I've moved on to a completely different life. And honestly, I was very surprised to see the flood of feelings that I still had, locked away somewhere. I guess I must have, you know, triaged them until I, you know, until I could get to them, I guess. And then with each chapter, there were the feelings again. And I had a good writing situation at that time. So some days I just let it all fly, you know? And sometimes I just did that for the rest of the day. But, you know, and this is another link to singing, with young singers, especially, you know, trying so hard and so devoted to getting a character and the music, and embodying it and doing justice to it, a young singer will often, you know, especially in coachings or in a voice lesson, begin to weep, because they're so moved. And as a young singer, you know, the same thing happened to me, especially with characters that I absolutely loved and couldn't wait to get working on. I would go in and I would weep, and I would kind of, you know, in the back of my mind, I'm sure I was kind of hoping to be approved for that, you know, for being so deeply moved. And all I heard was, you know, get over your emotion. Just get it all out and then get over it, because you are not able to deliver to anyone else the opportunity to be moved by the material in the way that you were. People want to come and be moved by your performance, they don't wanna see you be moved, you know, all over the stage. So in some ways it was, I'm not gonna say that it doesn't bother me anymore, I mean, there's certainly fraught, but you know, when I go over the details of things, it has been a great relief to have it in one piece, like you know, an orb of some kind that's full of the story, and I can put it over here and look at it and observe it, but it doesn't affect me, you know, to emotional breakdown as it did before. And I feel that I've completely lived that and completely left it there to live the rest of my life. So yes, I guess that's the definition of cathartic. - Okay, okay. So we know the techniques are so different today. What advice would you give someone today in making the choices about their care? - Oh, about if they had what I had? - Yes. Or, you know, going through all these reconstructive surgeries and is it- - Yeah. The advice I would give, is to inform yourself as much as possible. Try to understand what's in store for you. Prepare yourself with specific questions about procedures. These are things that you can do, and include questions about whatever you may have heard somewhere or seen on Google. Doctors appreciate this. They wanna know where you're coming from. The best doctors want to hear what you need to know as a patient to take responsibility, and in the best way that you can to be a partner in this project, and make their elite, you know, sophisticated brainiac skills reach the greatest outcome. So they need to know, even if they don't admit it, but many of the younger generation of doctors coming along are very much more open to that. As you prepare yourself, don't forget to include the things that scare you. Let them know what scares you, and what things you're gonna need help with. And then after you've prepared as much as you can with questions about what's going to happen to you, and with the things that you're able to articulate about yourself, that you can offer to them to add to their toolbox, then you have to kind of audition a couple of teams with these questions and how they, you're not ever gonna be able to judge the quality of their intellect or, you know, the comparative professional preparedness, you're not gonna know those things, 'cause it's a completely different thing, and it's not your specialty. But as a patient, you'll know how you feel about the way they answer your questions. If the only thing you can do is evaluate their character and kindness, is it important to them to listen to you? Because it's gonna be a long road, the consultation, you know, the consult is just a couple of hours on the front end. But it is important to know that you're joining a team that need your input, whether they know it or not. And you need to be a willing patient, which you will be if you trust them. And so you can tell from the way that they answer your questions, whether you're important in their mind to the whole enterprise of your care. So, communication is crucial, and trust are the most important things, I think, that fall to a patient at the beginning of their treatment. - I'm always careful to, you know, people say, "Oh, who do you recommend, or who do you like?" I think it's such a personal decision who you decide to go with, what medical team you decide to go to, because one person may have a great experience and another not so great experience. And it's, I agree, it's who you trust in the end, who feels right for you, to get through that process, because if it doesn't, I don't think it's gonna work well. So I think trust is so key to it. And I think also for, I think so many in the cranial facial community, and I think I'm sure you would probably agree, is that having coordinated care, you know, having a team that works together, is probably very valuable as well. - Oh, coordinated care is crucial, because at the top of the team, if you take two or three consults, I think that's enough to demonstrate that at the top the elite physicians are pretty equal to each other. They're all doing miraculous things, but the caliber of the care in the steps after the surgery or you know, the top entrance levels of the serious illness after the elite surgeon has finished, these can make or break their work. And there's so much else going on with the patient, other than just that first level. - Yeah. And it's not just the surgery, it's also in some ways the psychosocial, what's going on, the mental health too, I think is probably key to the whole- - Absolutely, the psychosocial with... And then you've got, you know, speech pathologists and movement coaches, and you have an interaction with them, and they have an interaction with your primary surgeon, and all of that has to be smooth, in order for, you know, the miracle to be sustained. And in my situation, I had a very, the surgery that they did on me is regularly done now, but it was kind of out on the frontier at that time. But it was doable and it had good numbers behind it. And in the first instance, it was successful on me. And I would choose it again, it had a 97% success rate. And that was a good number for me. And the outcome when it was successful was one that I wanted. But I had a cataclysmic complication. - Yes, I've read that. - And if I had not had a smoothly running team after that, even though a miracle had saved me once, you know, there are many times when my goose could have been cooked, and over the period of time that I had to recover from, you know, once all the miracle was accomplished, then I had to recover and grow into that, you know, different person, different body, different looks. I mean, my outcome was good. But at any point, if they had not had equally brilliant and sensitive adjuncts at the other levels, the stepwise levels into wellness, you know, I won't say they're below them, they have different skills. And the patient is equally dependent upon those. So, coordinated teams are absolutely crucial. And they were kind of new at the time. The hospital that I went to, it had been built like maybe five years prior and it had a revolutionary edition called the family waiting room. I mean. - Right, right. - I mean to have such a thing, such a common, obvious, logical thing be considered a revolutionary contribution is unbelievable. But yes. And teams are getting smoother all the time. - Absolutely. So, knowing what you know now, what is one thing you would tell your younger self? What is that one thing you would say? - Well, nobody could ever tell my younger self anything, to tell you the truth. - There you go. - So I wouldn't wanna have to. - Okay. So who do you see when you look in the mirror today? - I see a striver. You know, I see my whiskers, you know. - Right. - I miss the face that I used to have, you know, but it's not, your priorities change, and in some respect the rearrangement of my priorities is something that happens with, you know, age or maturation anyway. It just is not worth the trouble that it would take to, you know, to make up. But in the absence of, you know, wearing makeup or striving for a certain level of, you know, socially definable attractiveness, it just all seems so silly to me. - We could have a whole another conversation about beauty. And I mean, that's a whole another conversation, but- - It is, and we should have it sometime, Dina. - Exactly, we should. So where can people go to find out more and buy your book? Do you have a website? - Oh, yes, I do. And it's my name, www.kathleenwatt.com. And it has some of my other writing there too. But it's most, you know, it's kind of flooded now with information about the book. Also, the book has its own story. There's a lot of, you know, people pull different things from it, besides just the medical, the arc of the medical story. But at the end, I want to mention that I intentionally added an afterword to describe how what happened to me is not going to happen to anyone else who has craniofacial osteogenic sarcoma in 2024. Not because the oncology part of it, unfortunately, is not very much advanced, but the way they do it. And the technology and the techniques that are, you know, in current medicine that are brought to bear with the reconstruction phase, which is the thing that altered my life. Well, it's the thing that used up a decade, not the cancer, but the, you know. And that aspect has changed dramatically. And so I would direct people who are facing this particular challenge to heed that part as well, because, you know, so as not to be completely daunted by the medical part of the book. But that's where it is. And it's also available on Amazon and barnesandnoble.com and bookshop.org. And you can ask your local bookstore to order it. - Okay. Well I read it on my Kindle, so. - Oh, you did? Good. - I did, yes. Thank you. So Kathleen, thank you for sharing your journey with us and your story. You have gone through all of those surgeries and medical journey with self, you could have gone through all those surgeries and medical journey with self pity, instead, you did it with incredible strength, support, and what I love is your humor. So thank you. - It was my great pleasure and getting to know you Dina a little bit as I have. Dina showed up at my launch party, so that was great. - Yes, definitely. - And I just, I'm in awe of what you do. - Thank you. - So onward and upwards. Let's support each other. - Absolutely. Yes, for sure. Thank you. - Thank you, Dina. - Kathleen is an inspiration to me and everyone she meets. Everyone has a story. And I'm hopeful that by sharing stories like hers, 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 pave 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 non-profit 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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Don’t Stare, See Me: A Conversation 50:45

منذ 1 year50:45

50:45

On this month's myFace, myStory podcast episode, host Dina Zuckerberg is joined by Naomi Levinshtein and Aaliyah Booker. They will share their personal journeys, and their advocacy work, and discuss the profound importance of the "Don't Stare, See Me" campaign for themselves and their community. - [Announcer] 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 better get our 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, 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 Aaliyah Booker and Naomi Heather. Aaliyah Booker is a facial difference and disability advocate. She's also a D1 student athlete at St. Peter's University, majoring in biology, aspiring to work in the medical field. She too was born with Goldenhar syndrome, which came with a long road of surgeries, therapies, and a lot of rehabilitation. Aaliyah shares her story to empower the youth who look different, that different is beautiful, and to prove to society that we are more than just our differences. You can find her on all social media platforms celebrating her uniqueness, especially on YouTube, interviewing others within the facial difference community, for them to share their story as well as their accomplishments and goals. Additionally, she recently started her own business, Born to Stand Out, that focuses on self-love and acceptance. Naomi Heather is a 24-year-old makeup artist, photographer, Brooklyn College graduate, and facial equality advocate born with Van der Woude syndrome. Naomi loves blending her art with her advocacy and believes everyone deserves to feel beautiful. You can find her on Instagram at NaomiHeatherMakeup, where she showcases her makeup and photography. Welcome Aaliyah and Naomi, and we look forward to our conversation, hi. - Hi. - So, can you each share about your facial difference for those you may not know, and tell us how many surgeries you've had? And I'll start with Aaliyah. - Oh, Dina again, it's so good to see you again. - Yeah. - But, like you said, I was born with Goldenhar syndrome, and Goldenhar syndrome is a facial difference where your facial features is, some of them are underdeveloped, and for me, it only affected the left side of my face. And that means I was born with a underdeveloped mandible, underdeveloped ear, and underdeveloped eye. And within that, I had like multiple surgeries. I can't remember, like let's say, I had like over 26 surgeries we can say. - Wow. - And within that, you know, that didn't stop me for anything, you know. Right after those surgery, therapies, you know, I went straight to, you know, practice or anything, so, that's Goldenhar syndrome and it didn't affect me. - And Naomi? - I was born with Van der Woude syndrome, popliteal pterygium syndrome, kind of a mix between the two. I've had around 20 surgeries. It affected my lips. So I had a bilateral cleft lip and palate. I had bottom lip pits. So I have a lot of scarring here and it affected my nose and my hearing. So yeah, that's me. - Thank you both. I can't imagine having that many surgeries. I only had six growing up, so, yeah. So how has growing up with a facial difference affected your life? Give us a glimpse into your life growing up with a facial difference. Aliyah? - Me? Okay. So growing up with the facial difference, you know, I wouldn't say it was just always as tough. I feel like everyone always said it is tough, but I was brought in an amazing and strong family and they never treated me any different. They like how we should, you know, we're all human. There shouldn't be any, you know, oh, just because I have a difference, oh, I should be treated differently. No, we're all the same. And, you know, just being raised in a great family, you know, they really uplift my spirits even though when I was down and like, you know, just didn't feel like I belonged. You know, they always reminded me like, you do belong. There's nothing wrong with you. - Yeah. - And they're actually right. There isn't, and wasn't nothing wrong with me. And, yeah, I did have my times. I did have my moments like everyone in the craniofacial community did. And, but I didn't let that stop me at all. You know, I did everything. Like I have three brothers and I did, I wanted to do everything they wanted to do and I did. So like say they did karate, I did karate, say they did football, I tried to play football, but you know, I was just a regular kid, regular kid. And growing up with the facial differences, yeah, we had, I had multiple surgeries, therapies and a lot of rehabilitation. But, they always made it so much fun for me. I, even though I hated going to the hospital 'cause I never understood why I needed to go, but I did at the same time. But I think I was just so ashamed of, you know, of being there and why, and the reason of being there. 'Cause you know, being in a family, they're telling me like, oh, you don't look different, but why am I being put into a hospital doing these different things with different children? So I'm going to the hospital like, oh my gosh, like, what am I doing here? And I see all these children and they all had these differences. And I'm like, why am I here? I don't have a difference. Because my family is telling me like, oh, you're, there's nothing wrong with you. So it did confuse me for a minute, but then, you know, I would say like at a certain age, like around in middle school, that's when I realized I do have a difference. And it was really tough, you know, growing up, you know, going to school, you know, interacting with kids, you know, not everyone is too kind and, that really did something to me. And, you know, I didn't let it affect me too much because I always knew I had a, you know, I was always coming back to a place which is my home. I was always coming back to my family and they always reassured me. I was, you know, just me and Aaliyah, like, there's nothing wrong with you. So I was blessed to have such a amazing family. And even though I did have some trials and tribulations with growing up with the facial differences, it all led me to where I am today. Speaking in front of you and Naomi right here. Like, I, this is such a big blessing for me to overcome my battles and just share my story with y'all. Like, this is so much fun. It is so cool. - Yeah. - That's my experience of growing up with the facial difference. - And I have met your family and I could see how they are such a huge support for you. - Oh. - And I always felt the same way when I was growing up, that my family was always there no matter what. - Yeah. Mess. But I love them. - Yeah. And Naomi, tell us about how your facial differences affected your life and give us a glimpse into your growing up. - So, I mean, I think growing up with a facial differences affected me in many points of my life. I grew up with a single mom and so things were really hard for us growing up. I was always kind of like chronically ill on top of my cleft and had complications with it. So a lot of my medical problems kind of had to be watched over. I, but I also feel that it has brought my family very close together and they've always been really supportive of me and encouraging of me. I always kind of knew there was something different about me. I think like my first kind of interactions with kids my age kind of solidified that for me. But I, luckily I was, had really lovely mother. I had a lovely brother that didn't allow me to stop what I wanted to do or let me feel that my difference made me less than. I had a lot of issues connecting with people my own age growing up. Not in the sense that there was like anything wrong, but I think kids can behave negatively to what they do not understand. And I was always, you know, a very loud, proud person. So I came into a few bad bullies. And in a way I do think that it shaped my life and my perspective of the world and people. But I don't see that as a negative per se. I just acknowledge it. I, but yeah, I feel really grateful to be who I am no matter what I went through, because I feel as though my experiences growing up with my cleft, with all these medical problems has helped nurture a very empathetic spirit. - Right. - Resilient kind of personality and I found a piece of my purpose because of it, which is advocating for people like me. So, yeah, that's me. - Wow. Speaking of purpose, what inspired you to become a makeup artist? - So I found makeup one year when I was dealing with a lot of medical issues. So, makeup kind of became a comfort for me. It became a way to express myself because I always felt as a kid that people were looking at me and talking about the way I looked. But with makeup I felt like a sense of control in that and a way to express myself visually and show people not only who I am, but also my talent and my craft. And to this day it's become sort of a comfort place, something that soothes me and gives me peace. And I feel like everyone, no matter what, should look for that one thing that helps center them. So that's, makeup has been my thing. - I have to say, you've in some ways, 'cause I never like wearing makeup, it's still, I find it hard, especially when I'm accentuating my lips. But you actually inspire me to think more about it and to take more risk with that, so, thank you for that. - No problem. I mean, I think amazing things happen when you step out of your comfort zone. And I think we can always surprise ourselves. And I think there is a misconception with makeup that makeup is meant to hide. I personally don't see it that way. I see it as if something makes you feel more comfortable and something that makes you want to express yourself or just feel good, like feel glamorous, like why not? Why is that a negative thing? Yeah, I mean that's how like, I mean I, my first piece of makeup I got when I was a kid was concealer- - Right. - 'Cause I wanted to cover up my scars, but it took some time until I rediscovered it again and saw it in a very different way. - I love that. So Aaliyah, I love your phrase different is beautiful. Tell us more about that. - Oh, of course. So, I always say that, you know, ever since I started my advocacy journey, which was a year ago, that was like one of my like catchphrase. And whenever I say that, beauty has no standards and growing up with a facial difference, I always thought I would, I had to fit in a standard. I thought I would never, ever be placed in a standard within society's viewpoint. - Right. - And growing up as a, you know, a young girl and just, you know, looking around, always going out in society and just seeing how other, you know, I always had this jealousy part of myself. You know, seeing other girls like looking normal, looking all cute, looking just, you know, no differences, no traumas to the face, nothing. So yeah, basically every time I stepped out in society, you know, I always viewed myself, always belittle myself when I always stepped out, when I was younger and seeing all, you know, different type of, you know, young girls being themselves and just, you know, looking all pretty and everything. I never thought I could ever fit in that category. And, with the phrase different is beautiful, I can finally live up to this 'cause I finally build self-love, self-acceptance. And what I'm trying to say with that phrase is that different is beautiful and I feel like people use the term different in such a negative way. - Right. - And I wanted to, you know, bring light to that term 'cause different is beautiful and there's the beauty of different, I feel like people don't really see the beauty in things until you actually get to know them. I feel you gotta peel off the layers, get to know, you don't, you can't judge a book by its cover. And I feel like, you know, everyone within the craniofacial community can agree with this. Like, we have been judged based on our appearances our whole life, our whole life, which is unacceptable. Like what are we doing? And it is just crazy how society has just like, just stamped and input that in everyone's viewpoint and just, you know, just one look at me, they're just gonna base me off and just, oh, she can't do this or she can't do that. - Right. - You know, so with different is beautiful I just wanna make it known that, you know, we can do more than just, we can do more than what others perceive us of doing. You feel me? But what different is beautiful, I just really wanted to make it known to anyone within the craniofacial community or anyone that even has a difference. Doesn't have to be a facial difference, just difference in general that you're absolutely beautiful 'cause I didn't hear that phrase growing up. So I really want the youth definitely to hear that phrase because it is true and it's possible and yeah. - And I think the first thing people see is the face. - Yeah. - And then people make judgements on that first look without necessarily finding out more and that's - Yeah. - the difficulty. - Yeah. - Naomi, how do you think about beauty? How do you define it? - I mean, I don't think there is one definition of beauty. I believe that, I mean like how can you define such a word when it's so reliant on everyone's individual perception or opinion? - Right. - You know, to piggyback off what you were saying with beauty standards. Beauty standards have evolved all throughout history. You know, some of the most like oddest things, I'm sure have been an object of, you know, affection or attraction all throughout history. - Right. - So, knowing that it evolves and knowing that it is completely dependent on where you are, reminds me that the only person that really matters is myself and the people around me that celebrate me. So that's one thing. And another way I view beauty is I believe people that are living authentically, like themselves, and being themselves are the most beautiful of people. I think it requires a lot of bravery to be yourself in a society. As cliche as that sounds, I think for many, many years since the dawn of time, anything that has stood out has been hammered down. And I'm really grateful to be living in a time where I think we're starting to see a shift in that. So I just think people that do what they love, are loyal to themselves and their values, and who they are, are the most beautiful people. Which is why I think Aaliyah is like stunning. - I agree with you wholeheartedly. I think that when you are authentic, when you are your true self, that's where your beauty shines. And I have to say, that is challenging and hard to do sometimes, but that's when you really are beautiful. So I agree with that. - Thank you. - So Naomi, you recently started taking photos as well as being a makeup artist. And I can say that you're really good at it. I've seen some of your work. Can you tell us about your campaign, "Don't Stare, See Me." - So, I came up with this project probably long before I even knew the settings of a camera. I think it was always kind of destined for me. I just needed the right tools. And I think once I started taking makeup more seriously as a job, as a career, it pushed me to take up the camera. And then I started seeing all the possibilities that come with being your own muse, your own, you know, creative producer and doing your own thing, instead of waiting for someone else to do it. Because I really haven't seen too many campaigns featuring people like us. So I got this idea, I spoke about it with you, Dina. - Right. - And you guys helped me nurture this idea into fruition. So basically the whole premise is to be able to share the beauty that is the craniofacial community in a more artistic lens. I think my first kind of episode, rendition, I was just getting my feet wet. But now I'm starting to see my creative side come through because I feel as though, like a lot of the images I have seen of people like us are quite, how do I say? They're tame. They're like, we're human, you know. Which is important and necessary, but I wanna show we're more than just human. - Right. - We can be beautiful, we can be attractive, we can be powerful in anything we wanna be, because that's how I always felt. That's how I always wanted to present in my head. So, I got a group of people together and I'm really grateful. I'm starting to see it, you know, grow more. I brought people on my team. I met an amazing designer named Theo, who helped me with the large project, with Aaliyah, with the whole group. It was, I'm really grateful for that. And I hope the more this project expands, the more people see it, the more it can be socially acceptable to be people like us and not have to hide who we are or feel like we can't be those gorgeous people we see on a magazine. Because why the heck not? - Yeah. - I agree. - Why not? - Absolutely. Aaliyah, you participated in one of the photo shoots that Naomi did. What was that like for you? - Oh, it was beautiful. Like, that was my first ever time, like first time being, you know, behind the camera, doing the whole process, makeup, hair, I'm getting ready. And at first I'm not gonna lie, I was nervous. I was scared because I never, you know, celebrated my uniqueness like that, you know, and advocate in a way like that. So I was a little hesitant, but you know, you gotta put yourself outta your comfort zone to be able to be who you're, you know, authentic self, who, you know, who you're made to be. And when Naomi messaged me, I was like, oh my God, like this is so cool. Like, I always, I, when I tell you, I followed Naomi before she hit me up. So it was such an honor to hear from her, like, oh my God, you wanna talk about me, me? - Right. - Overall, it was such a great environment to be around, to be in a space with other people, with facial differences and just to behind the camera, oh my gosh. When I was behind that camera, I was a whole nother person. You couldn't stop me. And for the first time I felt seen, I felt alive and I felt beautiful. And, it was just like a wake up calling for me is like, wow, like, this can be something that I can do. This can be something that the whole craniofacial can do, which is modeling, which I never thought I could ever be when I was younger. Like me, a model like, I have differences. Why am I, you know, being viewed, but like just being behind that camera, I felt, like Naomi said, powerful. I felt so, so beautiful. And it was just such a amazing feeling. And I know that everyone else did as well. And we had such a great time. We had a great group. Like Naomi said, Theo the designer, he hooked us up with some exquisite designs he created and he just brought it to life. And Naomi, you know, she captured everyone's beauty and everyone's essence. It was just such a amazing time and I, that, I feel like that moment is, I always will cherish that moment because like I said, it literally switched the flip, flip in my head and I'm like, okay, now it's time to, you know, cause chaos but good chaos within craniofacial community. You know, it's time to wake us up. It's time to wake up 'cause we deserve to have our face seen and it deserves to be seen and be blasted on like a billboard or anything 'cause why not? Why not? - We need to get it out there. We certainly, I've seen these photos, they are gorgeous and I watched the whole process and I wanna participate in the next one. That's my- - I want you so bad. You imagine Dina in a gown, like I'm, I have the whole vision in my head, like a nice gown with her hair, like blown up. - I would love that - Ah, ah. It's gonna be so good. It's gonna be so, I am manifesting it. I'm putting out into the universe. It's gonna happen. It's gonna happen. - It's happening. - I'm excited. I am totally excited. - Me too. - So do you think there's more representation of people with facial differences in the media? Are we making any headway, you think? - I think we are. I think we are. I mean, Rome wasn't built in a day of course, you know, but I have been seeing more people included and it makes me really excited. I mean, I know someone in the community, Justin Stewart has a cleft nose and he was in a tell bar campaign, which is insane. - Yeah. - But seeing, I'm seeing things slowly move, you know? - Right. - I see albinism, I see people with scars, you know, it's baby steps. And I think we're on the right track. - We are definitely on the right track. Like you said, Justin Stewart, he's out there showing out. He, it's just crazy. I know, what's his name? Austin Halls. - Yes. So good. - Singer, model, like it continues and he's so like vibrant in his energy and he does not care what anybody says, but like his social media, his presence, it gives so much life and that's what we need. We need to show that to the craniofacial community, especially to the youth, especially to the teenagers, you know, - Right. - because they need to see that this is possible. You can be who you wanna be and express it beautifully well. You know, and, you know, like Naomi said, you know, it doesn't take a day to build Rome, you know, this is baby steps, baby steps. And you know, I feel like we're on a great track. We're, you know, doing this right here, this podcast, this YouTube series, this is a big step. But these are baby steps, you feel me? And we're all, we're going the right way, we're going the right direction. But it's just so good to have, you know, good and amazing people in our corner, in the craniofacial community that is enforcing a light and you know, pushing down doors, breaking down barriers for us so we know that we're capable of doing this. You know, such a nice way, beauty, come on. She's already breaking down the beauty standards and just breaking down these doors and just showing up to her, her job and her environment. You know, just doing the actions - Absolutely. - She's advocating because she's showing others that, okay, I look different, but I'm doing what I'm gonna do and I'm gonna do it lovely 'cause this is what I love. You feel me? You're not gonna take that away from me. You know, so just doing her daily activities, that's a big way of advocating and she's doing it in the beauty world and I feel like we're dominating and we're just gonna continue to dominate and yeah. - Well, representation matters, right? - Yep. - Absolutely. - It does. Yeah. - The benefit of social media is that, you know, more people have the ability to create platforms and share their stories. - Right. - So it's much harder for people to be able to pick and choose whose voice really matters. - Right. - Right. - So, you know, say what we want about how, you know, social media can be pretty toxic. It is the kind of fuel for change in our community, I would say. - Right. - Right. Right. And I, it's crazy you say it is toxic, social media can be toxic, but I realized that I've hid so much, like a part of me and like, so like, been so private and because of social media and how I felt about social media that, you know, the main reason I decided to open myself on social media is to change the narrative of social media. 'Cause like, if no one's doing, might as well, I do it for social media and I wanted to change, make it a positive environment for the youth. And I know I'm speaking, every time I speak, I always say the youth, because it really starts with the youth. It really starts- - Right. - How you're growing up in an environment. And my goal is to really start on social media and just spread a lot of kindness, love, positivity 'cause social media, it can really mess with you mentally if you're, you know, using it the wrong way. So I really wanna make a change with that social media side. And it's been working 'cause I've been seeing a lot of people on TikTok within the craniofacial community just talking, they're sharing their story and I've just been connecting with them. Like Naomi, I met Naomi on social media. I met so many other people like Justin Stewart, Austin Halls, Sophia, who was a part of the thing. Like, it just, I feel like once someone does it, everyone will start to do it. It's like a, you know, what's the a word? It's like a, it is like a, you know- - The domino effect. - Yeah, yeah. If someone sees you do it, you're gonna do it as well. So. - Right. - That's what I'm trying to teach to the other and the youth and it's just so cool, like I said, to see people just, you know, now celebrating your uniqueness on TikTok, whether it's Instagram, Facebook, and yeah, it's just been such a beautiful transformation, transformative thing to see what's the craniofacial. It just keeps on expanding, which is just so beautiful. - Absolutely and it's something that I didn't grow up with. So seeing all this is just amazing to watch and I sometimes I wish I had that when I was growing up. So, to our audience, I hope that you're enjoying these, 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 channels and sign up for our mailing list at myface.org / mystory. Steven Speliotis, hopefully I'm saying that right. Recently did a short documentary about you both called "Don't Stare, See Me," which recently won the best newcomer documentary at the River Dance New York Short Film Festival, and was also nominated for the Berlin International Art Film Festival. What was that experience like for both of you to share this with the world? - You go first Naomi? You go first. - You know, I, it all happened so quickly. We only had a few days to shoot and it was first of all, incredible how fast Steven was able to throw this all together. - Yeah. - And, you know, Steven had a vision in his head, but he was always so open to thoughts, ideas, feelings, concerns. And I was really grateful for him, you know, to wanna take on my story. I think, like still, for me its, crazy to think that people aren't so interested in the things that I do, that, like that really mattered to me. And I'm really, really grateful for that. I'm grateful for him and I wish I could have been there to see it in theaters for the first time, I was away on vacation in Japan that I know Aaliyah did so. - Yes. - Good. - And you can share what that experience was like. - Oh my gosh, I was speechless. Like to see your face and to see someone else that you admire as well, just on a big screen that you never, ever, ever would imagine was such a surreal moment and an eye-opener. And just to share that moment with you, Dina, and the whole myFace and my parents- - Yeah. - Was, I just, it just, it was just such a memorable and beautiful moment that I will forever cherish and throughout the whole day just recording, "Don't Stare, See Me" film was just amazing as well, you know. Just sharing the meaning and just redefining beauty and how growing up with a facial difference in society today. And it was just so, you know, so important and so raw to just share with the world. And I felt like it needed to be talked about, you know, real things need to be talked about and sensitive topics. - Yeah. - Because it spreads awareness and that's when people will actually listen, you feel me? And it was just so nice to be vulnerable in front of Naomi, Steven and Theo. They made everything so comfortable. It was just such a beautiful time just expressing our beauty in different type of ways, you know. And that will be my second time modeling for Naomi and her photographing me. And it is always, it's always a time with her. And we just had so much fun. Like, if we could do it again, I would do it all over again and- - We sure will. - And Steven, he captured everyone's beauty. He captured all the moments, all the key points that needed to be, you know, talked about and seen and the way he just edited everything and just combined everything together. It just came out so beautiful. And I'm very blessed to be part of this and just, yeah, it was so nice. I did, Naomi, I did shout you out during the, on speaking, like, you know how we had to introduce the short film and that was my first ever short film festival ever. So I didn't, you know, expect anything so big. But then I walked in, I'm like, oh my god, I'm in the movie theaters watching myself. - Right. - I'm like, what is going on? And I'm like, wow, this is real, this is real and this is possible. This can be our future. And I feel like the people in the craniofacial community, we forget that. - Yeah. - We think that we're so less in our minds and it just based on society and how society treats us. But just, you know, just keep going, come through the fire, just keep going, you know, you never know. And just keeping you, authentically you, it you and you can be anything you want to. 'Cause I never thought I would be modeling in front of Naomi and being on a film like, that is crazy but it's possible. The impossible is possible. - Absolutely. - And I never thought I would be able to be an artist in any sense. I always thought I had to be a certain way or do a certain thing because I felt like a part of me was missing because of this. - Right. - But, you know, the older I get, the more I realize that just because I have had this experience doesn't mean I need to change- - No. - Who I'm. - No. - And that anything is possible and that, you know- - Right. - I'm engaged where my voice matters, where our voices matter. We're, you know, we're able to tell our stories and I'm really grateful. - So I wanna let people know that they can find the short documentary "Don't Stare, See Me" on YouTube. So it is up there. So do you, have you found acceptance in your life? Or do you think it's a lifelong journey? - Who you talking to, me? - Yeah. - Oh me. It is a lifelong journey, but I did find a good side of self-acceptance. Like I'm in a better mental space now. I know who I am. I'm still on the journey on finding who I am as well. Every day I'm growing, every day I'm learning more about the craniofacial community, better ways to advocate. It's been such a beautiful experience to, you know, be on. And, you know, I'm literally at the point like, yeah, no one can't tell me anything. Like no one's opinion really matters, you know, 'cause I've been so caught up on that all my life, well, not all my life, majority of my life. And it feels so good to be free and just like, just on a mission, on self re-defining self and reinventing myself and just exploring things I never, you know, thought of doing and just building new interests. And it's just been such a great time. I've just been having so much fun, you know, just playing around with different ways to advocate and just being myself in different ways, like modeling, like I never thought that would be an interest in mine. And now it's like becoming like a thing that, like I think I can really do this, like take it as like a serious job. And I know I can, and I know I'm powerful with it. So I'm just, my mind is just all over the place. And I, and it's good. It's good because back then, like I mentioned, I didn't, I wasn't able to, you know, brainstorm ideas like that because I thought less of myself, I thought, I belittle myself and- - Right. - I hated that and so now I'm in a better space, state of mind and I hope to continue, well, I am, not hope 'cause it is going keep going. I hope to always, what's the word? To always exalt self-confidence to others so they know that, you know, just because I have a difference doesn't make me ugly, doesn't make me more, you know, just, you know, not what society portrays us to be. So, that's my big goal, you know, be the image for the craniofacial community. Yeah and just preach that with self-love. Everything I do is self-acceptance, self love. So yeah. - So who are your role models? - I wouldn't say I have role models. I do have inspirations. I really look up to, well, are you talking about like in the craniofacial community or in general? - In the, it can be either one, in the craniofacial community or... Who's that one person that- - Oh, one person? - Yeah. Let's try one person. - One person. My mom. - Okay. - My Mom, I know she's not in the craniofacial community, but- - She is. - Yes, she's a part of it. - Included, yes. - Exactly. Exactly. She is. But my mom, she knew like when I was born that I was going to tell my story. She knew, she kept all the receipts and she literally told me this, like when I started my journey, she was like, Aaliyah, I always knew you were gonna tell your story, but I didn't know when or how you will. But, she's my rock. She's been there through everything, all my surgeries, everything. And she accepted me for who I am. And she just been so, she's just such a determined and just such a, mom, I can't even say the word for you 'cause you already know who you are. But you know, she made me the woman I am today. You know, my mom is a boss of her own, she is her own entrepreneur and she has a whole business. So just seeing that and just watching her, you know, as me growing up, just watching her dominate the way she runs her business, the way she runs her household, the way she, you know, makes me feel and the way she raises me. It just brings out the best of me. And it made my personality and it made me who I am today. So shout out Ms. Gloria Booker 'cause that's my girl, for real 'cause without her I don't think I would've, I would be here today and just speaking in front of you. So that's my girl. - And Naomi, who's your inspiration or a role model. You have somebody? - You know, after you saying your mom, I'm like, dang, if I don't say my mom, I'm kidding, I kidding. She's up there like- - She's up there. - Susie Q, I love you so much. But I think my role model, not to be a kiss up or anything would be Dina. I think Dina was the first person I ever met with a craniofacial condition that I really connected with, that I felt was a really good influence to me. Dina has always encouraged my projects and has taken me seriously when there were times where I definitely did not. You know, to like piggyback off what the previous question of, is self-acceptance like, have I reached it or is it like a continuous thing? I personally think it's a continuous thing. There are times where I feel super authentically myself and I love myself and there are times I don't. And, you know, Dina has always been a driving force to me and never let me give up on my own ideas. So, yeah, you. - Thank you. Thank you and so last question for both of you with maybe one word or say three words. Who do you see when you look in the mirror today? Aaliyah? - One word - Or three. You can do three words to describe who you see when you look in the mirror today. - Okay. Three words. An icon. Huh? What's the two other ones? An advocate and a change maker. - I love that. And Naomi? - I would say, I'm resilient. I am charismatic. And, it's not exactly like a one word, but I'm full of love. - Love it. And I say to both of you how true that is. So Aaliyah and Naomi, thank you both for sharing your journey with us. The confidence that you both have is something that I wish I had when I was your age, and I can't wait to see what the future holds for you. No doubt you will change lives. You already are. So thank you. - Thank you. - Thank you, Dina. I love you. - Aaliyah and Naomi are an inspiration to me and everyone they meet. Everyone has a story and I am hopeful that by sharing stories like theirs, that 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 pave 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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Taking Center Stage: A Mother and Son's Journey 37:50

منذ 1 year37:50

37:50

On this month’s myFace, myStory podcast, host Dina Zuckerberg is joined by Leah Riman, who will share her journey from when her son, Logan, was born with a bilateral cleft lip and palate, blindness and other challenges to the music prodigy he is today. At the age of 2, Logan started playing the piano and he has played on some of the greatest stages including Madison Square Garden, Radio City Music Hall and Carnegie Hall. Logan is her greatest joy and Leah is his greatest champion. - [Announcer] Welcome to "myFace, myStory," voices from the craniofacial community, with your host, Dina Zuckerberg. - That was Logan on the piano. Today we'll be talking to Leah Riman, Logan's mom, about her journey and Logan's passion for music. 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 you'll never miss a future episode. And if you're a fan of "myFace, myStory," rate and review the program on Apple Podcast so that 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 Leah Riman, and we will hear from her son, Logan, on the piano. At the age of 19, Logan is a musical prodigy and has been playing the piano since the age of two. Born with a bilateral cleft lip and palette, microphthalmia, a rare eye condition where a person is born without eyes, resulting in blindness and other challenges. Logan's whole world revolves around music, and he plays everything from classical, to show tunes, to today's greatest hits. Besides piano, Logan also plays the drum, plays guitar, and tap dances. Logan has performed on some of the greatest stages in the world, and as he says, "he's just getting started." He is inspired by the powerful words of Helen Keller, "The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart." And also the words of Hans Christian Anderson, "Where words fail, music speaks." Recently graduating high school, he is currently trying to find a placement in a musical conservatory or program on a college level where he can continue to study what he loves, music. Leah Riman is a property manager in a the New York City area, who holds a master's degree in audiology, and whose dream it was to earn her PhD in cochlear implantation, when life took her in a very different direction. Her greatest achievement in life is her son, Logan. And she's proudly watching him accomplish what she was told he would never be able to accomplish. She is his greatest cheerleader, advocate, and supporter. Welcome, Leah, I really look forward to our conversation. - Hi Dina, thank you so much for having us. - Yes. So take us back to the day Logan was born. - So Logan is my Thanksgiving baby, and yeah, he was born via C-section. So 10:40 AM you know, first-time mom, nervous, excited, and you know, you wait for that cry that you're supposed to hear and then, you know, everything is kind of okay. And my heart's beating and I hear the cry and I'm like, okay. And then I hear the doctor say, "oh, we have a cleft lip, it's only cosmetic." And I'm like, "oh, oh, cleft lip, okay." Well, I went to school, so I know it's not only cosmetic, but okay, that's the least of my, you know, anything. He's here, he's okay, he's okay. Cleft lip, we'll figure it out. And then everybody's hush, hush, quiet, quiet, you know, and there's that big curtain in front of you. So I don't know what's going on. And then nobody's really saying anything to me. And then I'm like, "well, can I see him? Can I see him? Can I see him?" And they finally like, shown him to me and put him by my shoulder. And I'm like, "oh, why are his eyes closed?" And nobody's saying anything. I'm like, "why are his eyes closed?" And they quickly, like, literally, took him away and they're like, "oh, it's normal. Sometimes babies are born and their eyes are closed for 24 to 48 hours." And that was it. And as I'm still being worked on and sewn up and all that, my blood pressure starts to rise crazy. And I start having very bad reaction, you know, 'cause I'm stressing. And they like, knocked me back out, you know what I mean? They put me out 'cause I started reacting not very well. Yeah, that's not quite how I expected it to go, but yeah. - So what was your reaction and what went through your mind when you then heard, so you said you heard that he was born with a cleft lip and palette, but when you found out that he had no eyes? - I didn't find out about the no eyes for probably a couple of days because he was taken to a different hospital. He was moved and I wasn't moved with him. And it was Thanksgiving weekend. Doctors were, you know, it wasn't a full staff or whatever it is. And that wasn't, I didn't know anything, put it that way. And nobody was telling me anything because again, my stress level was on another level, you know what I mean? And I just wasn't reacting well at all. And I asked if I could be moved. They kept saying no. I literally early, checked out after a C-section, which probably isn't advisable, but to get to him, you know? And still, eyes were closed. I wasn't, I honestly wasn't thinking, no eyes. I don't know what I was thinking, but it wasn't no eyes. I didn't know what to concentrate. You see your baby in this little thing with a whole bunch of tubes and I didn't even like, the way, speechless as I am right now, that's kind of how I was, staring at him right there, you know? But I was next to him, so I was already calmer. - Right. - And the first thing I remember, when I did come up to him, he pulled out his tube, you know, and they're like, "oh, we're gonna feed him, we're gonna feed him." But again, he wasn't eating from anything. But when I got there, he pulled out his tube. I dunno, I took that as like a weird, like, he knew I was there, you know? And still, it was a couple of days after that, I think it was that Monday after, I guess, Thanksgiving weekend where they had the ophthalmologist come out. And you know like, in the movies when they start talking to you and giving you some kind of news and everything in the background goes slow motion? - Mm Hm. - As the doctor is telling me, you know, "I'm sorry," and like, "your son is never gonna see, he has no eyes." - Wow. - It's like, the world was going slow motion. - Wow. - And I was like, I wasn't comprehending what he was saying. And I'm like, "oh, okay," you know, "take my eyes," you know, "when can we do this?" And he's like, "that's not how it works. There's so many nerve endings, we can transplant almost anything, not eyes." And I was like, the cleft wasn't even an issue at that point. - Right, right. - It's a whole different ballgame at this point, you know? So yeah, that was, that's our birth story. - Wow. - You know? Yeah. - So what did the doctors tell you once, I mean, what did they say? - So they didn't know what it was because he had several anomalies. The microphthalmia, he had ear pits, which I know are connected to kidneys. He had a heart murmur. - Yeah, uh huh. - He had something called anal stenosis, and the cleft. So there must be a syndrome associated with it. They didn't know right away if he had a brain, was it a functional brain, what it was gonna be. And the best that they could say is "he may not walk, he may not talk, he may not be able to feed himself. We don't know," you know? That's kind of what I was left with. "We don't know, he has something, but we don't know what," so yeah, that was- - Yeah. My parents took me to a neurologist, so I couldn't hear when I was born, but they didn't do hearing tests those days. So my parents took me to a neurologist when I was three 'cause I wasn't talking, I wasn't communicating. And the doctor said something along the lines, similar, you know, and that I may not be able to talk, I may not be able to play the piano, I forget what it was I could play. - Right, right. - And clearly, they didn't get that right. But I think it was because I basically didn't hear anything, so I wasn't reacting. - Right, of course. - But it's crazy how they didn't do a hearing test in those days. Now, they do it automatically when a baby is born. So I can relate a little bit to that, and I'm sure my parents could, yeah. - Yeah, so I went to school for this, so I was familiar with the whole newborn hearing screening and all that. But when it's your child on there and they're like, oh, we have to do the screening, I'm like, "what? What do you have to do?" I was completely like, in a fog, you know? - Wow, yeah, I'm sure. - So yeah. - So how many surgeries has Logan had? - So we've been actually very, very lucky that we got, you know, Dr. Cunning. And he had one very long surgery, but he did have it. And they were able to repair everything at once. And anything else that he made, like, I get recommendations, you know, from those, "oh, well, you should get him," like, "fix his nose. He's got a very bulbous nose and he's of the age, and you can do that." And if it's not medically necessary- - Right. - I'm not doing it, I'm just not doing it, you know? So I'm happy with the way things are, thankful that he only had to endure one surgery. - Right. - And that's it. We got very lucky. - Good, so I know he graduated high school in June, which is very exciting. And you must be so proud of him. What was school like for him? - Oy, so school, school was never easy. Logan never quite had the proper setting for him. He was either too advanced or too delayed for a program. So he was kind of bouncing around, you know? And so fairly early on, they said that he's possibly on the spectrum, which is something that I actually fought that diagnosis his whole life. So he went into a school for kids who have autism, where it was quickly realized by the educators that he didn't belong there because, and he was being underserved. And then it took me time to get him into a school with a vision program. But now he was, we were kind of playing catch up 'cause now he missed a whole year, you know what I mean? So that's kind of how it went. It was very hard to get him all the services that he needed, to be in place. Speech being number one, like yourself, he wasn't talking. He was past three years old, you know what I mean? - Right. - So that was the big one. And here I am, fighting for five days a week of speech. And then he's got every therapy you can imagine, you know, at this point. - Right. - But again, it's very hard. He went to public school and it's very hard because therapists change out, by the time one gets to know him, you know what I mean? They're out, the next one comes in and they gotta start all over again. So it's like taking, you know, one step forward, 10 steps back, always. - Right. - So that was hard for us in school, you know, and academics never came easy. - Right. - But if it involved music, he was a completely different kid. - Mm. - Yeah. - So speaking of music, when did you realize that Logan had a talent for playing the piano? - Right away, it's one of those miraculous things where it was evident when he was a baby, a baby, baby. - Wow. - Music somehow, always, you know, we had an appointment maybe three, four, five times a week, be it for the cleft, be it for the eyes, be it for trying to figure out what else he had going on. And I always used to put like, baby Einsteins, you know, they had like the music and stuff. So I used to take that along everywhere we went. And it literally, maybe I couldn't soothe him as much as the music did, you know? And it was very evident. So I literally would walk into Babies R Us, or Buybuy BABY, whatever it was. And I would close my eyes and I would touch any toy, that if a sound came out, if music came out, if it rattled, if it vibrated, if it's saying anything, I wanted him to have it. So he had his selection, and whatever worked to calm him, you know, we got. - Right. - And so it was evident. Anything that had music he loved. So we knew it right away. - Wow, wow. - Yeah. - So how does Logan approach learning new songs without relying on visual cues? And how does he memorize complex musical compositions without the aid of sheet music or other visual cues? - So we did, he does know braille music. - Okay. - Just to be an overall rounded, well, good musician. He knows it, but anything he hears, he can play right after hearing it, you know what I mean? He'll hear the whole thing- - Amazing. - And then he brings up a little, it's honestly amazing. I watch him do it and I don't know how, I don't know how. I've tried playing "Happy Birthday," which is a little tiny song, can't do it. Can't do it, can't. - Right. - So I don't know. I don't know, but yeah. - And did he have any training when he was little? Or did he just literally could see the music or hear the song and play it without any formal training? - So when he was little, little, it was repeating songs, like "Mary Had a Little Lamb," or the "ABC" song, he would repeat, I had keyboards all over the place, you know? And then as he was getting older, I tried to get a teacher, you know, to work with him. I literally put ads in the paper for somebody to work with him. But A, he was tiny, he was five years old. They're like, "oh, he's not mature enough." And he probably wasn't, but it was hard. And they were afraid to be too strict with him, and that's something that was needed, you know? And so no, until, I think he was eight, is when we found the most amazing school. It's called FMDG Music School, for the blind and visually impaired. And that teacher opened up a whole new world to Logan. You know, he went from playing "ABC" to Mozart, you know what I mean? So they found a way to work with him. They found a way that worked for him, and they were able to teach him. And what he's accomplished there? More than he's accomplished through 12 years of schooling, honestly, you know? - Does it bring him joy, you know? - Absolutely, his face changes when he's playing music. It's like, you know, for him, communication is very difficult, you know what I mean? He doesn't have a lot of social, so he doesn't socialize a lot, you know what I mean? - Right. - And so when he does try to say something, not everybody understands him, but when he starts playing for you, you understand everything you need to understand, you know exactly what he's saying to you. And it's not even something that I can explain. You just see his demeanor changes, everything changes. And it's like, it gives him life, you know what I mean? - Amazing, yeah. - Yeah. - So what was it like for you? I know he performed in the myFace Talent Show, what was that like for you, to see him perform in the on stage for that? - So anytime that I can see him on stage, it brings me like the most, the proudest moments are always when he's honestly, on stage because he's there on his own merits. You know what I mean, he earned that. And I think like, I think it was maybe the second time, but he played "Perfect Symphony," and- - Oh, right, yeah. - I actually wanted him to play that because seeing the year before, all the kids, you know, them all together, they did make up the perfect symphony. They were perfect, exactly as they were. You know what I mean? - Yeah. - And I don't know, I just kind of loved it, even though the words don't match what I'm saying. But that's the feeling I get when that song is on. And it was amazing, honestly. It was amazing for him to get to do that with them. - It was an amazing moment. And I remember when Wyatt took him off of the stage. - Yes, yes. And that's another thing, you know, again, like I told you socially, things are difficult for Logan, but then there's kids who have been through or know kind of like, what he's going through, and they gravitate towards him, and they're there to help him. - Right. - You know, in a way that maybe somebody else who wasn't in his position would, you know? So to see that, just that alone, and it's incredible. - So 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're subscribed to our YouTube and Apple Podcast channels, and sign up for our mailing list at myface.org/mystory. So what is it like to see Logan play on some of the greatest stages, from Carnegie Hall, Radio City Music Hall in Madison Square Gardens, which is amazing. - So bringing it back to when he was little, you know, I'm very guilty of perhaps pushing his stroller while he's still facing me, a little longer than the average mom would. And maybe putting on a bigger bucket hat when we took him to the park, you know, to avoid the stares and- - Right. - People literally putting their baby onto a swing one over from us, as if they can catch whatever it is they think Logan has, honestly, you know? So it went from stop looking at my kid, to his name in big bright lights at Radio City Music Hall, you know, look at my kid, that's my kid, look at my kid, you know? - Uh huh, yeah. - So that's what I get, that's where we are now, you know? - So I know he got to play with one of my favorite performers, which is Billy Joel, tell us about that. - That was honestly amazing. That was one of the most unforgettable, once-in-a-lifetime opportunities that Logan had. So he was playing, when he played Radio City, it was for a talent show also, for a foundation, Garden of Dreams. And in the thing he was known as Logan Piano Man, you know? And after that, he played "Love Story," which is a very meaningful song to us, because he is my love story. That is my whole life, you know, I'm gonna get emotional, but anyway, so he played it and they were like, "oh, well, he's piano man. Well, would you like to come listen to 'Piano Man' at the Garden?" And we were like, "sure." They're like, "well, does Logan know any of his songs?" And I said, "no, we can learn." So we obviously, learned, we, he obviously, learned "Piano Man," and we got to listen to soundcheck. - Okay. - And like, we had a whole video prepared to show just in case. But then he took it a whole different step further and came down, introduced himself to Logan. And it was really, really sweet and innocent. And this is what I love about Logan. He was like, "Logan, I hear you like to play the piano. What do you like to play?" And Logan's like, "Piano Man," by Billy Joel, like, not even realizing, you know, like, it's Billy Joe in front of you, you know? And he's like, "well, would you like to play my piano?" And he invited him on stage and Logan got to play with him. And you have to understand the acoustics in an empty Madison Square garden, like 22,000 seats. I was like, I was shaking. I couldn't believe that this was happening. You know what I mean? And one thing I will never forget is what he said to me. He's like, "oh, he learns this all by ear?" And I'm like, "yeah," he's like, "you have to understand, there's a very small difference between magic and music, and this, what you're seeing is magic." - Wow. - And it really was, it really, really was. - Amazing. That's such an amazing moment. - Yes. - So who is your and Logan's favorite performer, and why? Do you have one? - Yeah, so hands down, it's Andrea Bocelli. Very early on, I think, Logan must have been not even two years old, I read his memoir. And he has a very fascinating life also. Like, I don't know if you know, or a lot of people know, he was actually an attorney, he went to school for law. - Wow. - Yeah. But his whole life was music also, you know? He wanted to be an opera singer, and he kept getting the door shut in his face also, hence pursuing law. And everything was a no, no, no. But his parents and his family, they fought to get him where, you know, they didn't take no for an answer. And so he honestly, every time we got a no, and I was like, okay, well this guy did it. And now, he is the world's most famous tenor and the most incredible, you know, entertainer. And that's kind of like, he got me through so many moments. And it might sound silly, like somebody you don't know and somebody whose parents you don't know. But that gave me strength to every time, okay, so you're telling me no over here, so we're gonna go over here, you know? - Right, right. - Until we get a yes, somebody's gonna open the door. And that's kind of like, where we are now, in terms of schooling, in terms of other things that, you know, we try to get done. So yeah, it's Andrea Bocelli. He used to do like, these PBS specials. - Yes, I've seen them. - 'Cause we'd get phone calls all the time, "Oh, Andrea Bocelli's on, watch, watch, watch." And I would watch it in tears, you know? And I was like, "stop calling me, call me when Logan's on one of these things," you know? But I took it to heart and I needed to watch that. And when we finally got to see him live, I bawled the entire show. But we haven't stopped- - And you've seen him year after year, right? - Yes, yes, yes, every year. And honestly, it is my favorite day of the year, it is. He's so powerful, and then just knowing his story and what it took to get him there. - Right. - You know, and he wasn't 15, 20, 25 when all this happened, you know what I mean? He was well up there. Gives me hope that one day Logan will be somebody's Bocelli, and we will be watching it, you know, the same way so that's- - I have no doubt. I have no doubt, yeah. - I hope, I hope. - Yeah, so what do you think are some of the best unique qualities about Logan? - Logan is very innocent, you know? He's very innocent, he is very loving. And I don't know if unique or not, but he's very loving. He's very sensitive, you know? He doesn't have that influence of everything that's going on in the world affecting him in the way that you and I do. And he's also very intuitive, you know? He knows when somebody wishes him well, and thinks of him and looks at him as him. And when somebody might not have the best intentions or doesn't really, you know, care too much for him. And that was true when he was little, he would literally exit a room if he felt somebody, you know, thought maybe something of him. And I always found that to be very interesting. Like, how does he know? But you know, the sixth sense or whatever it is, it's there. - Right, right. - So yeah. - So speaking of negative comments or not, but what are some of the things people have said about Logan? How have you handled it? - Not very well. Not very well, I'll be completely honest. Especially, when he was little. Besides the staring, you know, and people don't always know what to say, and I get it. People are also, could be fearful of the unknown and what they don't understand. - Right. - And that's okay. But you looked at him once. You looked at him twice. You looked at him three times. Unless you can help him in some way, stop. - Right. You know? And when he was younger, and I'm still actually, not even when he was younger, I'm still very, you know, alert to people's stares and glances and things that they say, you know? But I would literally, I would be confrontational. I'm like, "what is it you're looking at? Do you wanna ask me something, or if not, stop," you know? - Right, right. - Why put your baby a seat away from him? What is it you think is gonna happen? And I never understood that, you know? And that's why I'm very conscious if there's something that I'm not understanding or something where I do a double take, I'm so conscious of not making somebody feel the way we felt. And that's something that I never wanted him to feel. You know what I mean? - Yeah. - So if you ask Logan, who's the handsomest, he's gonna say him. If you ask him who's the smartest, he's gonna say him. Who's the best, he's gonna say him, because every day I remind him of that. So if anybody anywhere, ever tells him different, "well Mom said, I'm the smartest, and I'm the handsomest," you know? "So you're wrong." - I love that, yeah. - So yeah. - I love that. - Thank you. - So why is being a part of a community, like myFace or Garden of Dreams so important to you? - You know, there's probably less than a handful of places, besides being home, where I feel that I can totally put my guard down and not worry about what somebody's saying about him, what somebody's thinking about him, somebody's devaluing him or seeing him less than what he actually is, you know? And it's in a place, like all the events that you guys host, when he's around everybody, I know that nobody's judging him. - Right. - You, of all people. You know, I tell people all the time when they're like, "oh, well you should have done this," or "he could have been more independent than this." I'm like, "do me a favor, walk in my shoes one day, and then give me your opinion," in this situation. And being at any one of your events or in this community, we are all wearing the same shoes. - Right. - The size may be a little different, you know, the direction that we choose to walk in might be a little different, but we all know how the other feels and what the other is going through, you know? And that is where I feel the most safe and no judgment on any level. And that's such a comforting feeling that we need, especially after day, after day, after day of having to kind of be like on guard all the time, you know what I mean? - Right, right. - So that's why this is, it's crucial to have a community like this and grateful that you do what you do to bring us all together, you know? - Thank you, yeah. I always say, and it's so true, and people have heard me say it all the time, but there's power in the shared story and knowing you're not alone. And that community and knowing that, even for me, has been a game changer. - Of course. - 'Cause it's just, you think, oh wait, I'm not the only one who feels this way or has dealt with that so. - Yeah, thank you. - What message, let me see, what message or inspiration do you hope Logan's music conveys to an audience, especially considering his perspective as a blind musician? - What message? So he is online, right, on Instagram. And since people have come across his profile and read his story, and I've actually gotten messages from all around the world, you know, that he, in some way or another has gotten them to pick up an instrument that they haven't played in 10 years. I get people who tell me very, very, like, intimate details about their lives, you know? Oh, I'm here, I'm getting chemotherapy, watching videos. You know, they bring me comfort, you know what I mean? Or I lost my job and literally came home and what, but it's like the craziest thing, people I don't know, that I've never spoken to, they write to him, they write to me, you know? So he has a way of reaching an audience just because we are so transparent. - Right. - Listen, not everything is great every single day, you know what I mean? And we show that part as well, you know? So I think people gravitate towards honesty, towards that transparency. And somehow he brings them some sort of comfort also, you know, through his music. - Right. - They're thinking they have something difficult that they're going through, but then they're watching him achieve something that, you know, he was also told he was never gonna do. So that gives them hope that they'll be able to do it also, you know? So I guess that's pretty much it, yeah. - Yeah, hope is such a important thing. And when somebody has hope, it can change your whole life. And so Logan brings hope to lots of people. - Yes, he brings me hope too, you know? - Oh, absolutely. - It's not just other people, it's me too, so yeah. - Yeah. So knowing what you know now, what is one thing you would tell your younger self? - Hmm, that it's gonna be okay. It's not gonna be easy, but it's gonna be okay. And literally, you have to take it day by day. You can't, you know, 10 years from now, where am I gonna be, 20 years from now, what is he gonna do? There is that essay that somebody sent me fairly early on. I think it was "Welcome to Holland?" - Right. - Do you know that essay? - I have heard this one. - Yes, that's exactly, that's exactly what it is. And it's about having a child with a disability. And it's like your whole life, you're planning this extravagant trip to Italy and how it's gonna be and how you want it to be. And you get the guidebooks and plan all these tours, and then the plane lands and they're like, "welcome to Holland." And you're like, "what am I doing in Holland," you know? And it's very true, if you, you know, he still did all the cute things, babies did, and he's doing, you know, he reaches his milestones in his own way. And right away, when everything is thrown at you all at once, you know, it's not easy, day by day. Day by day, and things will be okay, you know? And I say that to myself now also 'cause I'm like, "well, what is he gonna do in terms of work?" And is he ever gonna get into a school? And what happens when I'm old and gray? And, you know, so gotta take it day by day and hope for the best. - Absolutely. Well, who knew that Logan would be where he is now? And I have no doubt where he's gonna be in years to come. And I will say, it is truly a testament to you, as his mom, for what you have, you've believed in him, and like you said, he brings joy to so many. And I've witnessed your devotion and dedication to Logan, and you truly are his greatest cheerleader, advocate, and supporter. I've witnessed it every day. So I have no doubt that Logan will go far with you by his side. - Thank you so much. - And we look forward to Logan's performance at our annual holiday party on Friday, December 15th, where he will play a variety of holiday songs on piano. - Yes. He's getting ready, he's getting ready, so we're excited. Thank you Dina. - So thank you, thank you. - Thank you so much. - Leah and Logan are an inspiration to me, and everyone they meet. Everyone has a story, and I'm hopeful, that by sharing stories like hers, 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 myFace support groups so that you can get connected 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. Please stick around for a final performance and a message from Logan. Thank you. - Happy holidays everyone. - 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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Hiding Behind a Mask: A Conversation with Mary Avella 39:27

منذ 1 year39:27

39:27

On this month’s myFace, myStory podcast, host Dina Zuckerberg is joined by Mary Avella, born with Crouzon Syndrome. They will discuss how those with facial difference can hide their true selves wearing both figurative and/or literal masks, even creating a personality. What happens when you remove those masks and reveal who you are underneath? - [Announcer] Welcome to "My Face My Story, Voices From the Craniofacial Community," with your host, Dina Zuckerberg. - Hello and welcome to "My Face My Story, Voices From the Craniofacial Community." Whether you're watching on YouTube or listening on Apple podcasts, quick subscribe now so that you'll never miss a future episode. And if you're a fan of "My Face My Story," rate and review the program on Apple Podcast so that we can get our message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the director of family programs at My Face. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "My Face My Story" is about people like us being seen and heard, about sharing stories within the cranial facial community and with others. Today I will be joined by Mary Avella. Mary was born with Crouzon Syndrome and she has had 30 surgeries. She is a student at Hunter College where she is majoring in psychology, neuroscience, and aspires to be a neuroscientist. She is passionate about advocacy for the disabled community and has been a member of the My Face family for a long time. She is also passionate about reading. Welcome Mary, I really look forward to our conversation. - Thank you so much for having me. I'm so excited to be here. - Great. So Mary, can you share with the audience about your facial difference and describe your difference for those who may not know what it is? - Absolutely. Crouzon Syndrome is where the seams of the skull are not fused properly, and one the main symptoms is that growth in the middle of the face is decreased. - And what was your childhood like for you growing up? - That's a very good question. I mean, I do have plenty of good memories, but I have just as many bad. I mean, surgery was, I had my surgeries very young in childhood, so they were all very traumatic for me. And again, that was half my childhood. So it definitely was not easy. I was also very different from all the other kids at school. I was the only one that looked like me. I was in special ed class, one of the special ed classes. I had a nurse. At some points later, I had a para, so it was definitely an abnormal childhood. - So what drew you to psychology neuroscience? And why do you wanna be a neuroscientist? - Well, it is a very complicated answer. I was trying out a few different majors and I really didn't find the right fit. I was math, I was English, which is like total opposites, and I really didn't know what I wanted to do. And then I've been going to therapy since I was five. So I had like, I had an inside piece to that world of psychology. So I've been a part of it for so long. So I figured, let me just try this, and I took my first introduction to psychology class in 2022 and I absolutely loved it. I wanted to help people like me who have facial differences and who have autism. I'm on the autism spectrum, and I wanted to just help people because a lot of people don't have both autism and a facial difference. And it's even rare just to have a facial difference. So I wanted to, as I said, just help people. But then I realized maybe being a therapist wasn't for me, that was the initial path I wanted to go, and I figured, well, I still wanna help people, but I wanna do the research behind that. That's how I can still help people. And all that is neuroscience. - Yeah, and I think we can use more researchers, especially in the craniofacial space. So that's great. So during the pandemic, we were all literally wearing masks, but I think many of us figuratively wear masks, especially for those of us with craniofacial differences. And you and I have talked a little bit about this. Why do you think we figuratively wear a mask? - Well, it's actually, I'm studying this with psychology, everybody does it to a point. We all have different aspects of ourselves. Like for me, I have work, Mary, I have school, Mary, I have family, Mary, it's, everybody does this. It's how we function through the world. But some people put on different aspects of their selves a lot more, or they try and hide who they are a lot more. I think that some of us wear figurative masks more than others because society has taught us that we're not good enough and we're very ashamed of who we are. So we feel like we have to be somebody different. - It's almost like creating a different persona of who we are. - Yeah. - To try to fit into that mold or that experience that we think others want of us, I think. - Exactly, exactly. We think that, especially from a very young age, we're taught, okay, so if you are this type of person or you're born this way, you're supposed to act this way and you're supposed to fit into this mold, and if you don't, then there's something wrong with you. So then a person will feel like they have to be less of themselves and more of the mold that were taught to be. - So how does wearing a mask protect you? - Wearing a mask, now, a bigger reason why I wore a mask was actually, it was more motivated by my autism than my facial difference. But there were so many aspects to this. Wearing a mask helped hide me in the fact that I didn't want people to know that I had autism. And obviously I can't hide the facial difference, but it would just help people like, hey, look at me, I'm a normal person like you are. I just have this very different face. It shouldn't be a problem. So wearing a mask, definitely, I tried to mold myself to be more like other kids in school, other girls, what women are supposed to be. So I definitely tried to do that. And for a long time it did hide me, it hid me well. And also masks definitely hide our deep, inner emotions. So a lot of the pain that I was going through was hidden by trying to be like everybody else. - Yeah, it's like I didn't want people to see that side of me. So I created this whole other person so that I could appear this way when maybe I was still feeling that way. But it allows you to do that, when you wear a mask in some ways. So during the pandemic, do you think there was a normalizing or leveling of the playing field when we were all wearing masks? - 1000%. That was one thing that I noticed right away. I've been stared at since I was five years old because of how I look. And it's especially because again, Crouzon Syndrome, it affects the middle of the face. Half of the middle of our faces were covered by masks. So if you're just seeing me from like halfway up the nose up, it's very, it hides a lot of the parts that were very different. So I mean, my eyes are not the same size. My nose is a little pinched on the very top. So that part was seen, but like the difference in my jaw or, which has been fixed, but the difference in my jaw or my lips already been, or maybe like how much bigger the lower part of my nose is compared to the upper part, were all covered, and I noticed a lot less staring. - Right. And were there any challenges for you in wearing the mask? - Yes, because of Crouzons, I'm primarily a mouth breather. It's very hard for me to breathe through my nose. I have to like, like people do it naturally. I have to like, okay, I'm breathing through my nose now. I have to like prepare my body. So if you have a mask covering, that's like right on top of your mouth, that makes it very hard to breathe. Most masks I couldn't wear because every like two minutes I'd have to take it off and engulf so much air through my mouth. I had to wear more flexible ones or maybe made out of more stretchy material. Like I could not wear blue hospital masks. I could not breath in the those, it was very hard. But I had to wear these specific black, like stretchy masks that were right on top of me. They had more of like a gap in between the mask and my mouth. - Right, I found also, because I'm also a mouth breather, that, and I don't know if this was true for others, but I found my glasses were always getting fogged up with the- - Yeah. - The mask because I think I breathe so much here, so if it wasn't capturing it all in here. Yeah, so I get it. So what are the consequences of wearing a metaphorical mask? Do you think we can wear a metaphorical mask and be authentic at the same time? - That is a very gray area question. - Yeah. - With wearing a mask, you know, you're performing, you're putting on a part. You can't always perform. Like psychologically, that will wear and tear you and that will do a lot of damage to your mind. And eventually the jig's gonna be up, or eventually you're just gonna get so, I know me personally, you're gonna get so angry at yourself or just so tired of having to play two parts that you're just gonna- one day, and the jig is up. And I feel like you, it's very hard to be authentic. Being authentic and wearing a mask are two opposite things. It's very hard to do two opposite things at the same time. But it's funny that you mentioned this, that you asked this question because there is a quote, I heard it in a TV show, "Disguise is always a self-portrait," and I think there's a lot of truth to that. We incorporate a lot of subtle truths about ourselves in the mask. Like we, maybe the person that we want to be, or like a certain quirk that they have will incorporate that. Or maybe a quirk that we have, as being as our authentic selves, it'll still be in the mask a little bit. Or sometimes the, or sometimes even the mask will be some of our inner emotions that we wanna let out, but we just label it as another personality. - Right. And I think the vulnerability, I think, plays a part in this because it's really hard to be vulnerable and let people see you when you're hiding behind the mask. But it's almost, I also think of a mask in some ways of a wall, you kind of build a wall in some ways. There's another layer, so it's hard for people to get too close to you if you're wearing the mask or not willing to show your vulnerability. - When I was in middle school, I felt the exact same way. For a lot of people, middle school's a terrible time. I think for people who have disabilities like us, we get a much worse middle school experience. So I remember it was right before middle school that I was diagnosed with autism. Well, that's what my parents told me, I was diagnosed in elementary school. - Okay. - But that was like a big thing in middle school, like half the high school and people could not know that I was on the spectrum. I felt like I was already bullied enough or teased enough. I didn't want people to know. And I felt like everything that I did was just wrong. And that's how I was treated by the peers that I was with every day. So imagine going through that every day, people being like, there's something wrong with you or stop doing that. Or a big thing was, because I'm a mouth breather, I had to eat with my mouth open, like kids literally reprimand me, "Eat with your mouth closed." And so I felt, just because of the autism, it was very hard to make friends and because I didn't fully understand social cues or I went to a co-ed school, so boy, girl dynamics, I didn't fully understand, or I tried to, but I just couldn't quite get it right. So I would always try to be somebody else, and I thought there was just so much pain in friendship. I thought people are just terrible and the world is cruel. So I had to literally envelope parts of my heart in ice, metaphorically, and I put up a wall. I wouldn't let anybody in, at least outside of my parents, and I felt that way, very much so. - And I think a lot of us in the craniofacial community, and I imagine in other communities, that wall was a very prevalent theme I think. I think a lot of us put up a wall to all those things you just talked about. So to our audience, I hope that you're enjoying this episode of "My Face, My Story." Whether it's your first time joining us or you've been with us since the beginning, make sure you're subscribed to our YouTube and Apple Podcast channel and sign up for our mailing list at MyFace.org/MyStory. In the young adult novel, "Wonder," a book that I think we both love, Auggie, the main character, was born with a facial difference and he wears a mask for Halloween. Why does he like wearing a mask, and why do you think a lot of people in the cranial facial community can relate to that? - Well, I remember in the book, even though I read it a long time ago, he said that he, kind of what what we said earlier, he was just a normal kid on Halloween. If he wore a mask, like there was a part of the book where there was a rumor spread around that he had, like a plague. If you touched him, you had to sanitize yourself right away. People thought that he was like, he had a disease or something, and there was a scene, at least in the movie, where kid dressed in the same costume, or no, I think it was Chewy from "Star Wars," high fived him, touched him, totally normal. And he felt like if I was not wearing a mask, that wouldn't happened. But if I wear a mask, then nobody stares at me, nobody treats me like I'm different. I'm just a normal fifth grader. - Right. Yeah, it was such a powerful scene. And then when he overhears the kids talking about him and they don't even know that it's him under the mask, or under the costume. - Yeah. - So do you think it can be hard to remove your mask, which for many of us, we've been wearing most of our lives? And what do you think is the hardest part of doing that? - It is 1000% one of the hardest things I did. It is 1000% extremely hard. I think because again, all of us are wearing a mask. It's actually become kind of a norm, especially for people in the autistic community. A lot of autistic girls, research has come out that masking is very common for them. So like, they'll mimic how other kids act. They don't understand it, but they imitate it. And then that actually prevents them from getting diagnosed and they will get diagnosed once they have, like a mental breakdown, in their twenties. So it's really, it has very serious consequences, masking, because as we're seeing with disabled people, you might have people, if it's mild enough or you're what's called high functioning enough, you slip through the cracks and then you don't get the help you need. Like if I, for example, even though my result is very mild, if I got complete reconstructive surgery, I might not be a part of my face. I might not get certain services that I need or be entitled to certain surgeries because I look fine. If I acted completely normal and I hid my autism so well, people would, I wouldn't be entitled to some of the services that I have. - Right. - I, because, they're gonna say, "Well, nothing's wrong with you, you don't have anything." So, and then you just dig a deep hole for yourself. - Right? - So, it turns into this big problem and then it just escalates further and further. I think the hardest part of it is knowing what's gonna happen after you take off the mask. Because it's like, okay, I'm doing this. How will people react? Will I lose friends? Will I get hired for a job now? Will people even care about me anymore if I actually am myself because they've known this other person this entire time? - Mmhmm. So is the work that you will do, I think, and the importance of mental health and psychology and really thinking about this because it's really important because like you said, that piece is so hard. I mean I am much older and it's taken me a long time to actually remove the mask. And I think there's still elements of myself that I hide. And I wanna say that I think, like you said at the beginning, we all do this to some extent, whether you have a facial difference or not, but as you say, it's much more prevalent or much more, the desire is greater for those of us in the craniofacial community and for those on the spectrum. So. So I think you alluded to this, but have you taken off your mask and what has that been like to reveal more of yourself? - First time I took off my mask, well I started in junior year of high school. I was finally like, "That's it, I'm not hiding anymore. This is exhausting." I was petrified that I was gonna lose friends. My parents were like, "Mary, they probably figured out that you are autistic already just because of some of your mannerisms," or saying something that was socially wrong in an instant, or just being like quirky. My parents are like, "They probably have already figured out that something's up." But I still thought that I've hid it so well, and even if they did figure something out, but I'm officially telling them now, I'm gonna lose everybody. Facial difference, again, is harder to hide unless you have massive plastic surgery. But because I had so much surgery already, I figured that, oh, it's mild enough that I can get away with saying I don't have a facial difference. And I was just so scared, I was petrified, but I really just told my friends and that was it. They were accepting of it in high school and then I started to just talk about it more because I knew it needed to be talked about more. And I also, again, was just tired of living this false person's second life identity that I just didn't care anymore if people knew. And then I officially took off my mask last year, in the spring semester of 2022. I actually had a class about wearing masks and I'm in the honors program as well, and they do special classes that just the honors students could take. And it was my first honors class, and this professor, she was teaching a class on masks that have been worn throughout time, like masks, like at a masquerade ball or certain criminals, they will wear masks, superheroes wear masks, but we talked a lot about the Covid masks as well, and we talked a lot about figurative masks and she knew, I told her who I was. I told her about the diagnosis, about everything, and she brought up the idea, she said, "You don't have to do it, but if you want, I would really like it if you talked about your experience in the class." And I was like, "Let's do it." And it was one of the last classes and I talked about all the different personas I put on. I talked about the autism diagnosis, all the surgeries, briefly, 'cause that's a lot. But I did this whole PowerPoint presentation. I showed before my 2020 surgery. I showed after my 2020 surgery. I showed so much and I literally said, "I am taking the mask off." And it was just so rewarding. It was amazing finally being myself. - And what was the reaction you got from the students? - Tons of applause. Tons of applause, everybody was so happy for me, I got cheers. - Great. - Yeah. - It's like Auggie says at the end of the book, "Everybody deserves a standing ovation," at at least something like that, at least once in their life. And it's such an amazing feeling when that happens and you, yeah, so that's amazing Mary, that you did that and- - Thank you. - Yeah. And I think we could all learn from that, 'cause I'm still working on removing the mask completely. So amazing. So what advice would you give to someone with a facial difference who is afraid to remove their metaphorical mask, or the figurative mask? What would you say to them based on what you just shared? - Oh, I would say, I would say it's hard. It's gonna be a long road. Don't, like, I don't want to romanticize it in any way, like don't think that it won't have consequences because you might, I had a very fortunate experience, you might lose some people. And it's, you might lose some things. But in the end, it's definitely rewarding because it's so taxing on your brain, on your mind, that it's just so rewarding. And sometimes when you have the mask, you become so immersed in the mask, you even forget who you actually are. That's happened to me. - Right. - So I feel like if you want to be yourself, do it slowly. If you don't do it, if you do it all in one, it's gonna be harder. It's gonna be more taxing on you emotionally. Do it piece by piece. Trust, make sure you have a support system to do it. Make sure that you have family and friends who truly love you, but have known you with the facial difference, who have been with you through the surgeries and have been with you through the diagnosis and have talked to doctors and have done everything. And make sure that you have them there with you. Remove the mask with them first, then move on slowly to other groups of people. - So how has finding a community like My Face helped and shaped who you are today? - My Face, oh my God, we have such deep history. It was so relieving and it was so nice to meet a whole community of people like me. It's been one of the circles where I get the respect that I deserve. I get the humanity desire that I deserve and I get to be friends or at least acquaintances with people who look like me, or if not exactly like me, like some of them don't have Crouzon Syndrome, they have other facial differences. So we're all in the same boat. We've all had a million surgeries, we've all had the good and the bad doctor experiences. We all have been through the recovery phases of after surgery, and we've all walked, we've all walked the long road between each surgery, and we've all been through what it's like emotionally, how emotionally taxing, even if you are putting on a mask, the lives that we have lived has been emotionally taxing because who would wanna go into surgery as such a young child, who would wanna go through that pain? So who- had major anxiety every time I had a surgery, especially at a very young age. I only started to not be so nervous when I was like towards the end of it, when I was like eight years old. - Right. - So, and then my 2020 surgery, which is conquering my fears, it felt incredible. And I would just say, do it slowly and make sure that, make sure it also, My Face has, My Face has made sure that I have a community that I could take the mask off in front of before doing it in front of the world. My Face has definitely given me the support to do it. It was actually, this was a very recent decision after, it was actually after a, My Face, one of the support group sessions, I decided I'm not gonna have anymore surgery because I don't, none of them are medical necessity anymore. It would just be for aesthetics. The big reason why I first wanted to do my 2020 surgery was because it was aesthetically pleasing to others, and I just wanted to be accepted and I was doing some of it for me, but some of it for others, and I was finally, after one of our support group sessions, I was just like, no, I'm not doing that anymore to please others. I'm not going through trauma just to get other people to like me. - Right. It's a great learning, and it's such a great advice you're giving, Mary. - Thank you. - So speaking of advice, what would you say to parents and families who may be at the beginning stages of their journey? - Well, first of all, most parents, like my parents, had no idea this was gonna happen. It's very much, it's a rare, again, they're all rare genetic mutations. And my parents definitely got a surprise when I was born. And they were, the doctors were running tests and they realized she's not breathing through her nose and they had a feeling it was Crouzons, and they told us go to NYU, see Dr. McCarthy, the legend, Dr. McCarthy, and get a confirmation from them. And the rest is history. But I would definitely say to parents, and families going through this, the most important thing you could do for your child, treat them the way that you would wanna be treated, give them their humanity, give them love, teach them to, I would also say be realistic. Don't try and make everything like pie in the sky because sometimes it's not okay the way that we're treated. Sometimes not everything is gonna be okay. But teach them that it's gonna be hard, but you will have successful moments in life. There will be good moments, it won't be all doom and gloom. And also, definitely every once in a while, parents give yourself a pat on the back. It is not easy going through this process of all the surgeries and a lot of parents, whether their kids are born with a facial difference or not, they're always worried about messing up. I'm not a parent, so I wouldn't fully know, but you are going to mess up at some point. Everybody messes up and there is no book on parenthood. So just, you are gonna make a mistake here or there, and it's totally normal. And also just make sure that your child, or whoever you're watching over, if you're their guardian, let them know that there is somebody there who is always in their corner, and you will always be there for them. That is the most important thing. - So much wisdom right there, Mary. So knowing what you know now, what is one thing you would tell your younger self? - Oh, one thing I would tell my younger self, you are going to be more successful than a lot of the people who are not nice to you. That's happened to me. I literally like, randomly have seen them on the internet somehow or like get a notification- and you know this person or I run into them, and on Staten Island, that's where I'm from, and I will talk, you know, how have you been? And it was all worth it because I turned out to be, I turned out to have a lot of good later in life. Is it perfect? No, do I still deal with a lot of the insecurities that I've had since I was a little girl? Yes, do I still go to therapy for it? Yes. But you will meet people who, and it may take a while, you will meet people who you mesh with, who you work well with. You will actually make friends. I know people on the spectrum will think that's impossible. And I'm not saying that's still not hard to make friends. It is. But you will at least have a couple of friends and just because of everything that you've been through, nobody can stop you from what you wanna do. I've seen, 'cause we have a lot more, we've had to grow up at a young age, in some ways, but we have so much bravery, determination, strength, wisdom, and just superpowers that a lot of people do not have, that we can apply to every aspect of our lives and we can come out to be very successful. Like I am in a neuroscience program called BP-Endure. If you go to Hunter College or NYU, you should apply. And I'm the first person that we know of that has autism, and I'm the first person who's been accepted that has a facial difference in this program. So I get to do what I love and I'm making progress for our communities. - Yeah, I always believe if you do what you love, it feels so good. So who do you see when you look in the mirror today? I know what I see when I'm listening to you, and knowing you, but who do you see when you look in the mirror? - Sometimes, depends on the day. Sometimes I still see that, sometimes I look at myself and I'm like, what did I look like before the 2020 surgery? I don't remember. Sometimes I am like, I really don't wanna be me today. I just don't because it's hard, especially with people with disabilities, it's hard to be us. So I feel like some days I'm just like, I can't do it today. And other days I'm just like, you're a queen, basically, and we're gonna have a good day. - Amazing. I will say that I, when I see you, Mary, and I've known you for a long time now, you are, you have so much wisdom and so much poise and so you are putting yourself out there in so many ways and I have so much respect, and I think I was not that person that you are when I was your age. And I think I didn't have that, I didn't have the My Face support in the way that you do, which I guess is also a piece of it. But- - Yeah. - Thank you Mary, so much for sharing your story with us, and your thoughts about hiding behind the mask and then revealing who you are. And as I said, I can relate so much to wearing that mask and even creating another persona. And it's only in the last few years that I have begun to reveal more of my true self, my authentic self. And I look forward to seeing where your journey takes you in the future. I am so excited to see where you go and supporting you all along on that journey. So thank you Mary. - Thank you so much. And I do wanna see where that journey goes, and I think it'll definitely be an interesting road. - Okay, thank you. So Mary is an inspiration to me and everyone she meets. Everyone has a story, and I'm hopeful that by sharing stories like hers, we can create a kinder world. For more than 70 years, My Face 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 pave the way for better outcomes. To learn more, please visit MyFace.org. If you would like to learn more about the My Face support groups so that you can connect with others in the cranial facial community, please visit MyFace.org/online-groups. Be sure to subscribe to "My Face My Story" 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 "My Face, My Story." Remember, it takes courage to share your story, so be brave and speak out. - Hi, I'm Stephanie Paul, the executive director of My Face. My Face 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, "My Face, My Story" 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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Clefthood: A Conversation with Father and Son 37:30

منذ 1 year37:30

37:30

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

منذ 1 year43:24

43:24

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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يقوم برنامج مشغل أف أم بمسح الويب للحصول على بودكاست عالية الجودة لتستمتع بها الآن. إنه أفضل تطبيق بودكاست ويعمل على أجهزة اندرويد والأيفون والويب. قم بالتسجيل لمزامنة الاشتراكات عبر الأجهزة.

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