Challenging the Status Quo with Musician Austin Halls
Manage episode 412581171 series 2944016
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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