To honor the 30th Anniversary of the Americans with Disabilities Act (ADA), In The Know is asking young people with disabilities about growing up with the law, and how it’s impacted their lives.
Julian Gavino can sum up his mission with one simple word: representation.
As an activist, he pens essays about the ways people with disabilities face discrimination online. His modeling career, meanwhile, has taken him as far as New York Fashion Week, where he took the runway in his wheelchair.
Gavino was born with Ehlers-Danlos syndrome, a condition that affects the body’s connective tissues. As he describes it, the genetic disorder has had an impact on “most areas” of his body.
“I mostly use a wheelchair,” Gavino told In The Know. “I have a feeding tube, which gives me the nutrition that I need. And I have a service dog that helps me.”
Gavino’s disability is a crucial part of his extremely public image — as is his identity as a transgender man. He came out as trans in his early teens, and today, his intersectionality allows him to advocate for the LGBTQIA+ community as well as people with disabilities.
“Most of my work has to do with trans and disability activism,” he told In The Know. “So whether that’s through writing articles on my social media, personally modeling, everything has to do with that: representation.”
It’s only recently, however, that Gavino has seen his activism on such a heightened platform. The 24-year-old originally started his Instagram account in college, when his worsening condition left him spending plenty of time by himself.
“I got a lot sicker in college, so there was a time I had to take a break,” he said. “I felt very alone and kind of like I had no one to relate to. So I started writing about my experiences [on social media] and I found that there were a lot of people having the same experiences that I didn’t know about.”
Within a few years, Gavino was modeling on some of the country’s biggest stages — including LA Fashion Week. That’s in addition to collaborating with gender-inclusive and gender-fluid brands like Tomboy and dapperQ.
Gavino has faced plenty of speed bumps along the way though. From practically day one, he’s encountered spaces and situations that simply weren’t prepared to accommodate his disability.
A prime example came during his first-ever fashion show, when he realized that even seasoned professionals weren’t sure how to properly represent someone in a wheelchair.
“I was so excited to be invited there,” Gavino said of the show, which took place at the Brooklyn Museum. Everybody was like, okay, let’s practice our runway walks, and I was like, ‘Well, how do you guys want me to like pose?’ Or like, ‘What should I do?'”
“And they were like stumped,” he added. “They were like, ‘You know, we never thought of that … we’ve never worked with someone in a wheelchair!'”
It’s an unfortunately unsurprising story. The history of fashion models with physical disabilities is, in many ways, extremely brief.
A prime example: New York Fashion Week (NYFW), one of the industry’s biggest annual events, hadn’t featured a model in a wheelchair until 2014.
Gavino got his own shot at the NYFW runway in February, posing in all white as cameras flashed around him. The day was, in many ways, a career highlight.
“Whenever I feel lost I just look to the future and remember where I’m going. The only way to look is forward,” he wrote on Instagram after the event.
Despite these personal victories, Gavino knows there’s still a long way to go. He told In The Know that the fashion world still has a “long way to go” when it comes to representation, adding that he knows his industry isn’t alone.
“We still don’t see enough disability representation like in the media, which is hard because so many people get their information from the media,” he said. “These days. That’s what they’re going to see. That’s what has the real-world implications on real disabled people.”
Gavino is thankful for legislation like the Americans With Disabilities Act, which protects several essential parts of his life — including his service dog, Atlas. But he knows the law could be improved, especially when it comes to enforcement.
“Just because it’s written doesn’t mean people follow it,” he told In The Know. “They don’t [follow it] all the time.”
That’s why “representation” is always the word at the top of Gavino’s mind. To him, people with disabilities need to be more visible — on the runway, on social media, on TV and in politics — in order for things to fully improve.
“In the future I’d like to see more people with disabilities in power, making the decisions,” he said. “You know, I’d like to see more education within schools, within the media, more effort on allies and other marginalized groups to bring us up and to include us.”
“We’re at the very beginning of this,” he added. “And a lot of people have been fighting for this for a long time and we need to enlist the help of everybody.”
If you liked this story, check out In The Know’s article on the 21-year-old transgender model who’s speaking out about his deafness.
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