Defining Beauty: A Conversation with Celina Leroy

myFace, myStory

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.