“A lil kid from the hood walking with his head down:” How Justin Stewart is shattering dysplasia’s limitations

Justin Stewart and I share a rare diagnosis: frontonasal dysplasia. The condition manifests in distinct facial features – widely spaced eyes, a broad flat nose, and a vertical groove down the face. From personal experience, I know the challenges of living with a visible condition are difficult beyond comprehension. However, Justin has continued to shatter every obstacle it presents and I’m incredibly grateful he has offered The Courier time to discuss how he did it. 

Between his two brothers (one of which is his twin) and sister, only Justin carries frontonasal dysplasia. Nevertheless, growing up Justin never once felt like an outsider: “until I stepped outside the home, I was never treated any differently.” Justin described his first personal recollection of acknowledging his condition as in kindergarten. “I had been in for a few months, and a new kid comes into class. He sits next to me, and I could tell he was a little reluctant. He turns to me and asks, ‘what’s wrong with your face?’ and I told him I was born like that. Over the days we would go on to develop a friendship but all I could think was, God, this new kid, and the first thing he notices is my face.” 

Unaware of the future ahead, Justin likened those difficult early years to a time of “survival;” “when I say survival, I don’t mean life or death, I mean mental survival. I remember walking around with my head down at a young age to avoid confrontation.” Discovering a shared sense of emotional resilience, Justin and I recognized how dealing with such a condition required early mental maturity in our respective childhoods. As with Justin spending weekends on the train from New Jersey to New York for doctor’s appointments, I would spend days out of school travelling to the closest specialist hospital. 

Delving into the topic of puberty, a phase difficult enough for the average teenager, Justin reflected on this time as a none-starter. He shared, “puberty, girls, that world is a lot to navigate as a teenager, but I would say it was non-existent for me. I was always the last picked, I was always the shadow. It’s not something any kid would want; I would be a liar to say it didn’t affect me.”

During this challenging phase, Justin underwent his second nasal surgery, during which doctor’s utilized cartilage from his left ear to shape his nose. Justin described the aftermath to this surgery as raw isolation. “I don’t know how I did it, there’s no secret, I had no therapy, I dealt with it. There are obviously some long-term effects because of that. It’s not healthy, it’s not how you deal. It was all I had available to me at that time. I just went through that shit. I had my brothers, I had my sister, I had my family, that was it.” Today, Justin passionately advocated for the importance of therapy. He emphasized, “therapy is a must, I’m not talking about intense therapy, just an unbiased outlet that isn’t your mum, dad, friends.” During this trying period, I inquired about the source of Justin’s resilience. He responded, “I never once knew I’d be doing the stuff I do now, but I knew I would be doing something big. I knew there was something bigger, I had no idea what it was, but I knew there was a reason why it was me going through it.”

In 2018, Justin’s breakthrough arrived after he embarked on a gradual journey into the Instagram influencer realm. He began sharing his personal experiences, one of which was particularly pivotal – a drawing that someone had made of him, accompanied by a death threat. Justin vividly recalled the immediate sense of paranoia that washed over him, nonetheless, it was this  post that propelled Justin further into the influencer sphere, and in 2019, he caught the attention of WESPEAK modelling agency. 

Justin described his initial shoot as a shaky start. “It was terrible. I had a lot of anxiety, the lights, cameras. People shouting pose here, do this, do that. It’s a lot to be around after never been in that environment.” A key turning point in his unease came when he crossed paths with the second runner up of America’s Next Top Model Khrystyana Kazakova. Justin recounted their first meet, “I saw this beautiful 6’3/6’4 blonde Russian woman, and I’m like eighteen-year-old, in a daze, but she calmed me down, showed me a few poses. We danced, we had fun.” It was the support of Kazakova that bolstered Justin’s confidence to continue this path. 

Despite a challenging beginning, Justin persisted in his modeling career, conquering one milestone at a time. He shared with me, "a lot of things started happening really quickly," referencing his interview with The Washington Post and his feature in Vogue. Perhaps his most significant career highlight came with his role in the music video for Rick Ross, 21 Savage, and Jazmine Sullivan's 'Outlawz.' Justin recounted the thrilling experience: "I was literally walking to the train station and my agency call me. They tell me I’ve got a job and it’s a music video, but they won’t tell me who it is. So, I’m walking to set, and I see a Maybach. And I listen to rap, my dad’s favourite artist is Rick Ross. Then I see Maybach after Maybach and I’m like it has to be Rick Ross.”Justin regarded the opportunity to work alongside such renowned figures as a validation of his mindset. He said, "These individuals aren't here out of chance or luck; they put in the work."

I was keen to inquire about the potential experience of imposter syndrome in a space traditionally reserved for a specific prototype. I asked Justin about this, and he shared, “I still feel it now. My job is based solely off performance and appearance, and you know, going from a small lil kid from the hood walking with his head down to a job based off my looks. It’s a lot.” Given the growth of Justin’s mentality and confidence, I was curious to ask to what he believe he owed to his condition, and experience living with it. “I think there’s some credit to it. I feel like I’m in a funny place right now. I feel stuck between advocacy for our community and condition but also, I want to be just a model with cleft, not a cleft model. Basketball players with cleft aren’t cleft basketballers, no, they’re just basketballers. I don’t want my condition to be my identity, I’m so much greater than that, bigger than that, my mind is better than that.”

In the future, Justin stated how he hopes to see the modelling industry continue to explore diversity, believing “the industry is going in the right direction, but there is still a lot of work to do.” Justin especially gave credit to the black plus sized community – “they paved the way for people like me, they started it and don’t get enough credit.”

Living with frontonasal dysplasia I have often seen jobs centred around image and appearances as beyond my grasp. To witness Justin, so fearlessly and brilliantly not only shatter barriers but also excel in an industry never meant for us is undeniably inspiring. With this in mind, I proposed to Justin, with his biggest limitation conquered, what is next? 

“I do in a way feel like there is nothing I can’t accomplish now. I have already slayed my biggest dragon. There are still so many more things I want to do modelling. Hopefully I can stay in the industry as long as I can; I can really see myself transitioning into acting.”

Justin and I both agreed on the significance of seeing someone who looks like us on television – and we both concurred we’re still waiting on our cheques from Lord Voldemort and Avatar for ripping off our looks. As Justin quipped: “If we’re going to be catching licks, least you can do is pay us the cheques!”

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