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While filming a supporting role in Mila Kunis’ new film Luckiest Girl Alive, I spent several months getting to know the cast and crew, attending cast dinners and read-throughs and interacting with everyone on set. I shook everyone’s hand. We had great conversations about the characters, the plot and all of the possibilities surrounding our characters’ respective journeys. It was a wonderful experience. And, at no point did anyone ask me about my hands (I have three fingers on each hand, not the standard five), nor did I have to explain them.
This is an example of what “real life” is like for a disabled person. In real life, my hands may come up once during my first conversation with someone — but that’s about it. They are not an ongoing focal point for conversation, as would usually be portrayed in film and television. My conversations are also not about how I can or can’t overcome this or that. Yet on screen, it can seem for disabled actors like the only characters we can play are characters who solely talk about their disability — or whose lives revolve around their disability as if that is the totality of their existence, when in fact it’s one of the most minor parts of our conversations and our lives.
I was born in Baltimore with a condition called fibular hemimelia, which gave me three fingers on both hands (like the Nightcrawler or a Ninja Turtle) and no right fibula bone. I have undergone 43 surgeries so far. I got through all of the pokes and prods from doctors, fights at school with teasing kids and years of physical therapy, and I’ve built up grit over the years. It has made me a well-rounded man. And I would love to see more well-rounded, true-to-life characters with disabilities on TV and in film.
I go to the gym six days a week with my friend and creative partner Kurt Yaeger, who also has a disability, but often when I get a script, I’m reading for disabled characters who are sad about their disabilities and must explain them constantly. And it can seem like no matter how hard we work to get in shape in real life, we never get cast as powerful, as alpha or as the strong, capable one.
I would love to see more stories of disabled characters who go to the gym, ride bikes, are in loving relationships, struggle with life’s ups and downs just like everyone else and just happen to have a disability. That would be authentic representation.
There are still so few breakthrough examples of authentic portrayals of people with disabilities in film and TV. That’s why I’m proud that in Hulu’s upcoming series Dopesick, I play a guy, Tucker, who happened to lose fingers in an accident and jokes about it with his doctor, played by Michael Keaton. Dopesick‘s writers didn’t make Tucker’s disability a sad character trait but rather just a part of his story. (Tucker even pokes fun at his situation, just like I do in real life!) And my buddy Kurt is on the second season of Netflix’s Another Life portraying a badass who’s fully capable, is hyper-athletic and whose disability comes up only once in the entire season. That’s how it should be!
I mentor young people with limb loss at an organization called Camp No Limits, where we enjoy fun camp activities in an environment free of judgment. [Editor’s note: THR Next Big Thing Zyra Gorecki, who stars on NBC’s La Brea, recently spoke about Camp No Limits.] We also teach the kids’ parents how to treat their kids like kids and to let them live their lives authentically without unconscious biases. I think there is plenty of opportunity to use TV and film to create this same type of judgment-free environment. The types of characters that these young ones can look up to on screen are few and far between. We need to see characters with strength, tenacity and grit. We need superheroes, love interests and leading men and women. A person with a disability is any of these things in real life, so it only makes sense that we reflect that reality on screen.
To do so, we need production companies to hire more disabled creators, writers and producers bringing their authentic experiences and perspectives to stories about disabled characters. According to a recent study, 93 percent of writers rooms have no disabled writers at all. It’s important to give creatives with disabilities the power to control their own creative fates, just like Hollywood allows able-bodied writers, producers, actors and directors to do. My experience working on Luckiest Girl Alive was so great because the director, writer and producers worked with me directly as we discussed how we wanted to portray my hands in the film and, most importantly, allowed me to be a part of my character’s creative process. It would be a huge step forward if every set allowed this type of creative collaboration!
It’s also important for disabled artists in our industry to always be creating our own content, which is why in 2015 I created a show that Eli Roth ultimately picked up. Our docuseries A Little Different, which aired on CryptTV, showed audiences that being different is badass. It’s hard for some people to wrap their heads around the image of people with a disability being attractive or fully capable, but our show proved it’s possible. Fans of the show tell me to this day how A Little Different gave them hope and motivation to chase their dreams despite having a disability, and that limits can be pushed within their own lives and aspirations. Kurt Yaeger and I also wrote, shot and are currently in postproduction on a comedic skit series called Tommy & Bobby, which will drop on our social media channels over the next six months. Even though Kurt and I are the two leads of the show and both of us have a disability, we only actually mention those “disabilities” once in 140 episodes!
Here’s my call to action: We’re looking for able-bodied allies to elevate us to an equal playing field as creators, showrunners, writers, directors and actors, held to the same high standard of creative excellence and given the same opportunities. Netflix and BBC have developed programs to cultivate more content with disability in front of and behind the camera. If other companies follow suit, we can increase representation and amplify the voices of disabled creatives and writers, allowing them to tell their own authentic stories — and change the perception of what actual, real life is like for people living with disabilities in America and all around the world.
Stop assuming that our lives are sad. Let us show you what we can do.
Alex Barone is an actor based in Los Angeles. He was featured in ABC’s Discover Talent Showcase in 2019 and his credits include truTV’s Adam Ruins Everything, Hulu’s upcoming miniseries Dopesick and Lionsgate’s mystery drama Luckiest Girl Alive, out next year.
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