Facial Difference as an Underrepresented Disability: A Conversation with Sora J. Kasuga

myFace, myStory

Host Dina Zuckerberg sits down with Sora J. Kasuga, Face Equality Activist, to discuss her intersectional experience of living with multiple marginalized identities including being Japanese-American, neurodivergent, queer, and having a facial difference (lymphatic malformations and venous malformations on the left side of her face). Sora shares her journey of finding her voice as a disability justice and face equality activist, loving herself more, and how she hopes to instill that passion in others. The two also discuss understanding how others perceive our worth versus how we perceive our own worth, as well as Sora's wish to come together as a community to be visible and be activists on the world stage.

- [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 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 Sora J. Kasuga. Sora J. Kasuga, they she, is a face equality activist, writer, speaker, circus artist, and co-founder of CirqOvation. Their activism is fueled by the historical and present context of their many identities, Japanese-American, disabled disfigured, neurodivergent, and queer. Sora's advocacy aims to break down societal barriers, and bring awareness to the human rights issues at stake for those with facial differences. Throughout her 15 year career as a performer in the entertainment industry, she's experienced firsthand the ironclad system that erases and denigrates people with physical differences, starting with the lack of positive representation for facially different people, onstage, onscreen, in print, and throughout the media atmosphere. In a society built on shutting certain people out, Sora reaches for an inclusive world that emerges stronger because of our differences, not despite them. Welcome, Sora. I really look forward to our conversation.

- Aw, hi Dina! It's so good to be here. It's good to see you.

- Yes. I'm excited for our conversation. So, can you share with the audience about your facial difference, and describe your differences for those who may not know what it is? And how many surgeries have you had?

- Sure, yeah. So I was born with a couple rare conditions. I had venous and lymphatic malformations throughout my face, like on my eye, and on my tongue, and on the left side of my cheek, and the chin area. And you know, it's so weird, I usually don't lead with how many surgeries I've had, just because most of my surgeries were aesthetic. They weren't to help with, I mean, not all of them, but most of them were aesthetic. And I always feel a little weird, because I'm like, well, I had a certain number, you know, I did have a lot of surgeries. It's so weird, because I feel like that feeds into the medical model, and it's like, this is a personal thing for me. This is not right or wrong. I'm not, it doesn't come with judgment or criticism, but for me, I'm just like, oh well, you know, I am very, I feel very complicated about the surgeries that I had in my life. It's not all good, it's not all bad, but it's just very complicated for me.

- Right. No, I understand. I understand. So what was your childhood like for you, and what was your family like?

- My mom wanted to give me the most typical childhood possible. My mom, my whole family. And so I felt that love and support throughout my life, and I was, my mom was always saying you're normal, which is absolutely not true, but really wanted to give me that sense of just being a typical kid, and so I grew up not feeling any barriers, or I did, but just always trying to push through them, and I developed habits, right? So when I would walk into a room, I would look straight ahead, so I would block out a lot of the noise that I think a lot of other people in our community really took in, and I very consciously, I was just like, no. Tunnel vision, right? So if I walk into a room, I would look at where I was going, and I would just block everything else out. I'm also very good at suppressing things, which is a, that's not something to be proud of, but it's a survival technique that developed within me as a kid. And so the ability to block things out and suppress emotions, which years of therapy have helped to unlock that later in life, and work through those things, but yeah, so you know, growing up, I always think back, and as a kid, I really felt like I had a typical childhood, looking back as an adult and reflecting, now I know that it was not a typical childhood that I had, and that I had to develop a lot of survival strategies. But I had such a supportive community around me that it made it a lot easier.

- I can relate so much to what you're talking about, that sort of sense of normal childhood, the sense of being able to do, being told I could do whatever I wanted, but also the idea of suppressing emotions, and all of that, and just what you just said, I can relate so much to.

- Did you have siblings, Dina?

- Did I have what?

- Or, did you. Do you have siblings?

- I do, I have an older brother who's seven years older.

- Oh yeah? Was he like, he was super supportive also?

- Yes. And he was, I think, very much, I don't really quite remember, but I think very much a protector of me, you know? Especially when I was younger. Yeah.

- Yeah, I felt, you and I are similar. My sister is only three years older than me, but she was my protector, and she always was so kind, and just let me hang out with her and her friends, even though I was the annoying kid sister.

- Right.

- Right? Like, she was always just like, ugh fine. And would let me come along. And was just always very welcoming, and also protective. So it was really, yeah. That's the kind of community that I want for everyone.

- Yeah. I agree.

- Which unfortunately is not what everybody gets, but you know. I hope that we can move towards that.

- Absolutely. So as a kid, did you want to run away with the circus?

- No. I had no idea. I had no designs. I remember watching, my grandfather took me to go see Ringling Brothers, and Barnum & Bailey, as a kid, he took my sister and me. And I remember watching the trapeze artists, and the showgirls, and being like, oh, that looks like fun. But it was never like, anything in my brain that I could ever become a performer. I was actually on the fast track to becoming a doctor. So like, from the age of three, my grandfather was a doctor. He worked with the public health service, and I wanted to follow in his footsteps. I really wanted to heal people, and do good for humanity, and I thought being a healer would be that. And so that was my goal, through college. And then college, everything changed.

- Right.

- Everything, college, and a few major life events led me in a different direction, and then from that, I was going into the ministry at one point. I left that life path, and from there, I discovered circus. And I discovered, and this is all, this feeds into supportive community, right? And so in Cleveland, I found, I had always been a dancer. I loved dance as a kid. It just made me feel so strong and so powerful, to dance, like I felt like, and maybe this is the wrong mindset, wrong, but it wasn't, it was a way that I felt empowered as a kid. Like, when I was on stage I felt like, well when I'm on stage, people can see what I do, not my face, right?

- Right.

- Which is not quite what, like now looking back, I'm like, oh, that's not quite what I want for my childhood self. What I wish is that people would just look at everything, accept me for everything I was, and value that I was a dancer. Because I showed up at the studio, and I decided that I wasn't going to leave until they let me perform with them. And so I just kept on showing up until I became part of the company, and started gigging with them. They gave me my first professional contracts, and they gave me all the tools to become a freelancer. And they were incredibly empowering for me. Like, my face was never an issue with them. Never, not once was I asked critically about my face. You know, as we got to know each other, and share stories, it came up. But it always does when we're with our family and friends who really care, right? But it wasn't the thing that was on the forefront of their mind when I showed up at the studio. And they empowered me to then go on, one thing led to another, and landed me in New York City, and that was where my real full-time professional career started.

- Right. So you've been a professional entertainer for almost 20 years now?

- Yeah, yeah.

- So, how did you, so what was it like when you started working in the industry, and how hard was it to break into the industry as someone with a facial difference?

- Yeah, that was really, so that was a shock, I will say. So coming from Cleveland where I felt unconditionally loved and supported as an artist, then once I went to circus school. Like, okay. So you know, in circus school, I was offered a contract for the next touring season on a circus. And when I got back, so that circus was in the UK. When I got back to the United States, a bunch of us got called into the boss' trailer to sit down and have a chat, and he looked at all of us, and he said, I want you all on next year's tour. And so we were celebrating, and we thought that was really great, and we all went back to our homes to get ready for the next season, for the next touring season. And when I got home to the US, I emailed over and over again, waiting for that contract to come through, and one day an email came through that said unfortunately we can't have you on next year's tour. It doesn't have anything to do with your talent. We just, you're no longer needed. And I thought that was a blow, because I had, in our circus school, I was one of the longest running acts, and I found out later, not much later, like a day later, that it was because the boss was afraid of what would happen after the shows when we performed meet and greet with our audiences, right? He was afraid of what people would think when people saw my face. And that was stunning to me, because I had never encountered that yet in my time, that had never been an issue.

- Right.

- And so that was just like, it was a really big blow to me. And I finally got onto another circus tour, and it was in the US. And the day I showed up to the lot, I was taken into the costumer's trailer, and she immediately just, very quietly, she didn't say anything to me, just started trying to figure out how to cover the left side of my face. And I just stood there, and I just stared straight ahead, because I just didn't know what to do at that moment. And it's hard, because in that moment, I'm like, I need work for this season. So what am I going to do here? I'm on this tour. I need this tour.

- Right.

- I felt like I couldn't say anything, so I just stared straight ahead. I just let her exhaust her options, because she couldn't find anything to do, right? And so I just let her exhaust herself without saying anything, and then she let me go from the trailer, and I just wore the costume that everybody else wore. Right? And I got into rehearsals that day, and the choreographer saw me dance, and she said oh my gosh, we have to feature you. Like, how do we get you, let me talk to the boss, and we should have you on a platform in the center of the ring.

- Right.

- And so I was really excited, because I'm like, ah, this is it. I'm gonna be featured. This is so great. And you know, time passed, and one day I saw her, and I walked up to her. I could see all this frustration on her face. And she's like, I'm so sorry. We can't actually do that. The boss won't let me. I'm like, I was like, why? Like, do you know why? And she just like, all she had to do was give me a look. And she wouldn't even, she couldn't even bring herself to say it.

- Right.

- And so I was just like, okay. Fine. Right? So you know. And you know, and it goes into, it wasn't just on circus lots, it was like, I got a nightclub job at a casino, for a casino that did circus shows in their nightclub. And I was, a director said, you know, we really wanna work with you, but in the future, we've gotta ask you to cover your face. So like, these are the things that started my career. Right? Like, I got out of circus school, and it was like one right after another after another after another. To be fair, and here's the thing. This is the beautiful thing, because it is not all like this, right? I have a lot of companies throughout my almost 20 years who just never, it was never an issue. Right? Who saw me perform, who saw my promo materials, who valued me for me, for my professionalism, for my skill, for any number of things that none of them having to do with my face. So it is, you know. But there has been a lot of finagling. So I just always was trying to be like, what is the backdoor that I can slide in here?

- Right.

- What's the backdoor, what's the backdoor, right? Which is, I don't think, it makes me angry, because I don't think we should have to do this. I don't feel like we should have to struggle this hard to be valued. And in our society, our faces are a piece of commodity, right?

- And that's the first thing people see when they look at you.

- It is the first thing people see. We are either valued or devalued by how we look.

- Right.

- By how we sound. Right? Like, all of the first impressions, that determines our immediate value, which I think is total BS. Right? Absolutely. It's not how it should be, but it is historically accurate, physiognomy and phrenology date back to Ancient Greece, so for anyone who doesn't know what these terms are, these are pseudosciences, so physiognomy is linking facial features to moral qualities, or identity qualities, like all these qualities. Phrenology is like the shape of the head, determining things like intelligence, you know, moral goodness.

- Right.

- Right? And on and on, right? And so these date, this is ancient history. So it is really hard to fight against something that wasn't a concept, but still persists today.

- Right.

- Right?

- Do you think it's gotten easier? I mean, I feel like, I don't know. Do you think it's easier today than it was 20 years ago with all this talk about inclusivity, and diversity? Or do you think it's, do you think there's been a shift, or not?

- Okay, so I think we're making progress. But for me, progress is never fast enough, right?

- Right. I agree.

- But yes. I think we're making progress. The body positivity movement is great. What I have issue with is that it stops here. Right?

- Yeah.

- So it is from chin down is the body positivity movement, and it very much still focuses on but here she has a pretty face.

- Right.

- Right? So that is valuable, right? So I take issue that we are excluded from different movements, right?

- We're not part of the conversation.

- Yeah, we're often excluded from the disability movement, also. So you know, oftentimes in disability circles, people don't recognize that facial difference is a disability. It 100% is. It is protected under the amended ADA. As of 2018, we are a valid disability, and by the social model of disability, which is being shut out from society, it is not about our bodies, right? Our bodies do give us challenges, right? Anybody who's disabled knows that our bodies, our body minds, give us challenges, right? But it's really not centered on that. It's not about fixing ourselves, right? It's about challenging society to open its doors. The onus of responsibility is on society to let us in.

- Right.

- Right? So we are disabled because of society, not because of our body minds, right? Society can open accessibility to us, so if we are fully accepted into the folds of our communities, into our families, into larger society, that takes away our disability.

- Right.

- Right?

- I agree. So you're a face equality activist now?

- Yeah.

- What does that mean to you, and what keeps you going, how'd you get here, what keeps you going in that?

- Right, so honestly, Dina, and I don't know if you're the same way, but I spent my entire life running away from my face. This is a thing. Like, I built my career off of running away from this. Right? Just like, it doesn't exist. It doesn't exist. Like, I am normal.

- Right.

- I take issue with the word normal. But you know, I am normal, right? And I think you and I have had a lot of conversations about this too, right? What's been your experience with that?

- No, I did. I spent my childhood not wanting to talk about it, not wanting to acknowledge it, not wanting to, I pretended I could hear everybody. I wanted to be, quote unquote, normal. Fit in, be like the other kids. And it went even into my adult years. It's only in the last 10 years or so that I really have come out with who I really am, and be so willing to talk about it, but I spent a lot of my years not wanting to acknowledge it or talk about it.

- Yeah, it's really hard, right? Because it feels like, I've had a lot of conversations recently about coming out as facially different, right? There was like, I feel like coming out as queer was so much easier than coming out and acknowledging that I have a facial difference. It was like, way less scary. I wear so many identities visibly, and so coming out as loving that I'm Japanese-American, like loving myself, that was really hard, because all my life, I really tried to, I really tried to be white, my entire life, right? I really tried, and so my whole life was like, as a Japanese-American, was trying to hide my JA identity, because I wanted to fit in. I wanted to have friends. I didn't want to be too Asian. I didn't wanna be seen eating weird food, right?

- Right.

- That was like possibly disgusting to other people. And it was just like, having my culture being scrutinized, that has to do with a long line of generational trauma that starts with the Japanese-American incarceration camps of World War II that my family was in, like my family was incarcerated in camps during World War II, and that carries a lot of generational trauma, which builds, it is built into our DNA. It's built into our psyches. So it's just, you know, there's all of that, and then having a facial difference on top of that, and also being queer on top of that, and neurodivergent, you know, I'm ADHD and autistic. And so just all these things piled on top just made me feel like, I don't want to be me. I'm good. I'm gonna create a new identity, right? And what that does is like, so in some ways, yes. That built the life that I'm living right now.

- Mm-hmm.

- And in so many ways, I'm still working through the trauma that that caused, because when we run away from our core selves, when we run away from our identities, it builds this self-hatred.

- Yeah.

- Right, internal racism. It builds internal ableism. It builds all this internal hatred, so when you hate yourself, then who are you? Who do you become? And it is impossible to become anybody than who you really are, and so you're living this ghost life, like an avatar of someone who you want to be, but is not really truly you, and it creates this whole dysphoric universe of feeling completely disconnected from yourself, and reality.

- Yeah.

- And always guessing at who you should be to be the most palatable to the most people.

- Yeah. You have just said the thing that I have been struggling with and thinking a lot about. It's like, who am I? Because I've spent so much of my life trying to be something that I wasn't necessarily, and wanting to please and be out there for everybody else, but not for who I was at the core. And it's a journey, right?

- Absolutely.

- And I think about who am I outside of everybody, of the image that I've created for everybody else?

- Right. Right. And I just turned 40. And I'm reaching this period in my life where I'm just like, screw it. Screw it. Screw everyone, I don't care what you think. And that is actually not really true. Like, I still deeply care about what people think. Like, no matter what we say, I will always deeply care about what other people think of me.

- That's hard.

- And that is a life for me also, right? But just being like, you know what? I actually just need to focus on who I, what my values are, right? And right now my values are very much like I need to love myself. I just got back from Washington. And my husband, Josh, we all visited there. And we sat around, and Jen, my sister and I, and my Uncle Sid, we sat around and shared stories, and spoke our stories back to each other about our life as Japanese-Americans and what that meant, and ancestrally, what that meant, and what it meant from his experience of living in the camps, as a kid. He was like a little tiny child in the camps. And to be able to take that and internalize it, and feel the tragedy, and feel the suffering, but also feel the resilience, and the survival, and to understand and finally love ourselves, and to see my uncle finally start to love himself as a Japanese-American, right? Like, that is very parallel to facial difference, right? To taking our struggles, and internalizing them, and you know, knowing that we have a larger community that have experienced the same thing. So talking to you, Dina, is always such a beautiful experience for me. We share our stories. We're like oh yeah, and that. And that, right? I didn't discover the facial difference community until, oh jeez, when was it? 2018.

- Right.

- Right?

- I remember talking to you pretty early on.

- Yeah.

- And having conversations with you.

- Yeah. Right? And it was just like, when I found the community, I felt like I found home. Another piece of my soul. Because I was like, oh my gosh. This is something that I didn't have as a kid, and it's not something I wanted as a kid. I didn't want other disabled community. I didn't even know I was disabled as a kid. We need more leadership within organizations that are for disabled people, right? Disabled organizations, facial difference organizations. Like, we need leadership for our voices, need to be heard, so I think oftentimes we are spoken for, or spoken over. Right? And so you know, when we're talking about beauty, I'm also talking about there's a wider expanse. It starts with visual for us, and expands outwards, as far as that sense of beauty infiltrates every single part of life, right? And so expand what people can see as beautiful and valuable, value humans for humans, and drop the commodification of our faces, like, that is the vision. That's really what I want for us, for our community, but for everyone. This affects everyone. Right? On a parallel, the LGBTQ community. The 2SLGBTQ, QAQI2S+. I started with 2S. Anyways, right? So, and especially the trans community right now. We have a very parallel movement, right? So, we need to, and you know, the trans community has their own struggles. Right? It isn't interchangeable. It is not the same, but we have a lot of similarities. And so the idea is to get society to open up the perception of what is valuable.

- Right.

- Right? And what is correct, right? And we all know that there is not a correct, right? So you know, facial difference, disfigurement, is often linked with the moral model of disability, which is, we are disfigured, we are disabled, because of something that our families did, or something that we did personally. Right? A lot of people come upon their facial difference through, if not through birth. Right? And so it must have been something that we did to deserve this.

- Mm-hmm.

- That our families did that made us deserve it, that made their babies disfigured, right? And that is completely wrong. Disability is not right or wrong. It is just a part of human variation.

- Right. And it's just a part of who we are. It's not all of us. It's just a piece of us. I always think that. It's not all of me, it's just a piece of me.

- It's a piece, right? And it's a strong piece, right? But I do, what I want from society is to see us and value us because of our difference, right? We bring a long of wisdom to the table because of our experience of the world, and our perceptions of the world. Our perceptions of the world have been informed by being shut out, and I think that makes a lot of us way more compassionate, and able to show others how to feel that same compassion, both for ourselves, and for others.

- 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?

- Honestly, these days, finding the community was the best thing that could have ever happened to me.

- Right.

- Honestly. Like, when I stopped running away from who I was, and I started reaching out for others like me, because my life has been pushing away, like no, no, no. Don't wanna be associated with, you know, like I was saying, with other disabled people, with other people with facial differences. Because I don't want to be like them. No, no, no. Right? Which was not right. When we built community, when we find each other, this is how we build our movement. I really want to instill activism into as many people as possible, right? We need national strategies right now. We need to make this be political, get lawmakers involved in this, right? We need national strategies, we need a national movement to bring awareness and positive representation to our community. We need cost disability solidarity. And we need stronger protections, all of these parts of the community, right? This is a grassroots effort. We have to, and there are so many organizations that have been doing this work for years. Right? Face Equality International, I will shout them out over and over again. You had Phyllida on this show.

- Yeah.

- Right? She and the organization are doing amazing, amazing, amazing work.

- I agree.

- And there are other grassroots activists out there. There are so many. And we just need to come together, and just keep on pushing, right? Support each other, support the movement. Get other people involved in shouting out that we are valuable, and we deserve everything that we are fighting for. We deserve to be treated with equal respect.

- Absolutely. And I know you spoke on the UN panel, which is amazing. That's getting our voices out there. I mean, I think that was an incredible thing that you guys did.

- What I really love about the UN panel, A, personally, I got to meet so many amazing people, and also, you know, it brings an international awareness also, right? We have some protections here in the US, but internationally, it is really hard. It is so much worse. And you know, think about how things are in the US, and you know, internationally, people are just thrown away. Our community is thrown away.

- Right.

- And so we need to, this is a major human rights issue. What is beautiful about being at the UN is it validates our movement, right? We are a valid disability. It gives us voice. And this was Face Equality's second time, my first time, but Face Equality's second time at the UN. So we are building scene. And so even though we have our panel there, even though we've done it twice, right? So we have a long ways to go.

- Right, we have a lot of work to do.

- Yeah, we can, as we come together as a community, we can do this.

- So before we wrap up, who do you see when you look in the mirror? Who are you today? Who do you see?

- Aw Dina, I love this question. I see someone who is on a journey, and that is always going to be it. Who I am today is gonna differ from who I am tomorrow. All I wanna do is advocacy, and I have all these other things. Like we have to eat, and so I have to still run our company, right?

- Right, right.

- Right? But you know, it is not always like that. I see someone who is trying to love themselves. And I'm not perfect yet. I'm not there yet, right?

- Is anybody perfect, honestly?

- I don't think it's ever gonna be perfect.

- I don't think we can be.

- But I'm working towards self-love, and I think that's all any of us can do. And yeah. I just see someone who is working, and who's on a journey, and I think that's really all I can do right now. What about you, Dina?

- I agree. It is a journey. It's a lifelong journey. And I think, I mean, even from the first time I talked to you a few years ago to now, like, you are on an incredible journey, and you are amazing. I think you're amazing. So thank you. Thank you for sharing your story with us, and I actually I look forward to seeing where your journey goes in the future.

- Same with me.

- Because I have no doubt you're going to do some amazing things in this phase, so thank you.

- Thanks, Dina. Thanks for having me on.

- Yes. 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 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.