(FRANKLINVILLE, N.J.) — For Mackenzie Trush, being among the donkeys and horses on her family farm in Franklinville, New Jersey, is where she feels most herself.
“Growing up here has been such a really fun, unique way to grow up,” she told “Nightline.” “These are my pets and my family.”
Trush’s upbringing has been unique in more ways than one. She was born with a form of dwarfism called spondyloepimetaphyseal dysplasia, or SEMD. Her condition is one of only 175 documented cases in history.
She’s found ways to adapt her whole life, even finding a way to compete in equestrian competitions. Now, the aspiring actress is making her own path on TikTok, where her sudden rise to fame has been a “really welcome, fun change,” she said.
“So quarantine started… I was like, ‘Now is the time to do the thing I always say I’m going to do, which is make a TikTok and post kind of educational but fun videos,’” she said. “And so, I just made one.”
She said that at first it felt silly posting.
“Then I woke up the next day to nothing crazy, but like a couple thousand views on my first video ever, and it’s been a roller coaster ever since.”
Trush isn’t alone. For what might seem like the first time, disabled content creators have leveraged an enormous platform in TikTok to build a genuine audience like never before.
Influencers with a range of disabilities have tapped into a young, eager audience.
Now, these disabled creators are using the app to tell their stories in their own words, without being forced into the conventional narratives of disability — all while introducing a new generation to a different kind of star. They’re fighting for representation in a media landscape that has otherwise ignored them.
Spencer West is a disabled creator who had been a social media star for some time before he gained a huge following on TikTok.
“Oftentimes, society tries to put us in a box. For me, it was, ‘See yourself as non-disabled,’” West said in one video. “Don’t be gay, and money plus stuff equals happiness. Everything changed for me when I leaned into my disability, came out as gay and started finding happiness in my own way.”
West was born with a genetic disease called sacral agenesis and doctors made the decision to amputate his legs when he was 5 years old. A YouTuber and inspirational speaker, West gives audiences a sense of his life.
West has built quite a following. He became friends with pop star Demi Lovato, climbed Mt. Kilimanjaro and has done charity work in Africa with the WE organization, including raising money to provide clean water to communities in Kenya. But it wasn’t until he joined TikTok that his influence really began to take off.
Now, with over three million followers on the platform, he’s using his space to educate. But he also wants audiences to know that it’s okay to be proud of your disability.
“I grew up in the ‘80s and early ‘90s and, at that time you wanted to be seen just like everyone else,” West said. “That your disability doesn’t define you or limit you in those ways, and now we’re sort of learning that’s a terrible way to think. … I’m proud to have a disability and it is a part of me.”
Imani Barbarin couldn’t agree more. She’s an activist and writer with a focus on the intersection of race and disability.
“We represent so many different faiths, political backgrounds, and I wish that we would no longer be seen as a monolith,” she said.
Barbarin says that if you look her up, you’ll get “the truth. I think my videos are, very much so, geared toward not really sugarcoating disability.”
Imani Barbarin is an activist and writer with a focus on the intersection of race and disability.
Her videos offer an uncompromisingly honest take on the reality of life as a Black woman with cerebral palsy.
On a daily basis, Barbarin says she experiences not just ableism but sexism and racism as well. Her existence is met with bigotry on multiple fronts, she says.
Barbarin also wants to make clear that she doesn’t want to “overcome” her disability. She’s unapologetically herself and is ready for a change in the way society represents both Black and disabled people.
“In terms of the media representations of disability, it [is currently] all about making non-disabled people feel better about themselves by comparison,” she said. “Our bodies are a litmus test for how much worse yours could be, and how [much] more grateful you should be, because you could be us.”
“I really hope Black and brown disabled people see themselves reflected on social media, at least,” Barbarin said. “We need to be seen by the public and by society because we exist and we are here.”
Representation of disabled people in Hollywood and the media, or lack thereof, has long been a glaring problem. While 26% of the adult population of the U.S. is living with a disability, a study on the top 100 grossing films of 2019 found that only 2.3% of speaking characters had a disability.
Sixty-five percent of those characters had a physical disability while only 29% had cognitive disabilities and 28% had communicative disabilities.
Alyson Patsavas, Ph.D., co-produced the film “Code of the Freaks,” an in-depth exploration of how movies treat disability on-screen.
“If film is the only place that you can access or you have seen a disabled person, and that story becomes the only narrative that you learn about, it carries so much more weight in shaping your understanding of what disability might be like,” she said.
Those stories are everywhere, but Hollywood wants to force them into cookie-cutter narratives, Patsavas said.
That said, there have been more nuanced roles for disabled actors. For example, RJ Mitte, who has cerebral palsy, played Walt Jr. on the TV series “Breaking Bad.” Steve Way, who lives with muscular dystrophy, stars on the Hulu comedy Ramy.
As an aspiring actor, Trush made a promise to never take roles that make her disability a punchline.
“As I got older, [I was] offered roles in commercials. But, [they would say], ‘You’re gonna be playing an elf,’” Trush said. “It was just portraying that stereotype even further. It’s not helping. That’s hurting the community.”
She said she wouldn’t be able to sleep knowing that she contributed to that stereotype, but she acknowledged that being able to say “no” is a privilege.
“I’m lucky that I could say no, because it can make such a difference worldwide and help progressive change,” she said. “I’m proud of my content. I like to tell myself that maybe, somewhere in the back of their mind, the video will stick with them. And maybe, eventually, they will take a baby step in being more open and understanding and empathetic and thoughtful.”
Barbarin said she’s happy the community is getting some of the visibility it deserves.
“It’s always funny when people ask, ‘Where’s this community been this whole time?’ Like, right here. … We’ve been here the whole time,” she said. “And I think it’s our time. I really do.”
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