For Mackenzie Trush, what she feels most about is being among the donkeys and horses on her family farm in Franklinville, New Jersey.
“Growing up here was a really fun and unique way to grow up,” she told Nightline. “These are my pets and my family.”
Trush’s upbringing was unique in several ways. 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 has found ways to adapt throughout her life and even find a way to participate in equestrian competitions. Now the aspiring actress is making her own way on TikTok, where her sudden rise to fame was a “really welcome, fun change,” she said.
“So the quarantine started … I thought to myself,” Now is the time to do what I always say, which is create a TikTok and post educational but funny videos, “she said.” And so did I just made one. “
She said it felt silly at first to post something.
For Mackenzie Trush, what she feels most about is being among the donkeys and horses on her family farm in Franklinville, New Jersey.
“Then I woke up the next day with nothing crazy, but like a few thousand views on my first video ever, and it’s been a roller coaster ride ever since.”
Trush is not alone. For the first time, disabled content creators have used a massive platform in TikTok to build real audiences like never before.
Check out the full story on “Nightline” TONIGHT at 12:35 PM ET on ABC.
Influencers with a range of disabilities have reached 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 disabilities – while introducing a new generation of a different kind of star. They fight for representation in a media landscape that they otherwise ignored.
Spencer West is a disabled creator who was a social media star for some time before he had a large following on TikTok.
“Society often tries to put us in a box. For me it was, “See yourself as not disabled,” West said in a video. “Don’t be gay and money plus stuff equals happiness. Everything changed for me when I leaned into my disability when gay came out and started finding happiness in my own way. “
West was born with a genetic disease called sacralagenesis, and doctors decided to amputate his legs when he was 5 years old. As a YouTuber and inspiring speaker, West gives the audience an impression of his life.
Spencer West is a disabled creator who was a social media star for some time before TikTok exploded onto the social media scene.
West has built quite a number of followers. He befriended pop star Demi Lovato and climbed the mountain. Kilimanjaro and has done charitable work in Africa with the WE organization, including fundraising to provide clean water to communities in Kenya. But it wasn’t until he got to TikTok that his influence really began to wane.
Now, with over three million followers on the platform, he uses his space to educate himself. But he also wants the audience to know that it’s okay to be proud of your disability.
“I grew up in the 80s and early 90s and back then you wanted to be seen like everyone else,” West said. “That your disability does not define or limit you in that way, and now we are learning that this is a terrible way of thinking. … I am proud of a disability and it is part of me. “
Imani Barbarin could no longer agree. She is an activist and writer focusing on the intersection of race and disability.
“We represent so many different faiths and political backgrounds and I wish we were no longer seen as a monolith,” she said.
Barbarin says if you look it up you get “the truth. I think my videos are very focused on not really glossing over the disability. “
Imani Barbarin is an activist and writer with an emphasis 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.
Barbarin says that she experiences not only skills but also sexism and racism on a daily basis. Her existence encounters bigotry on several fronts, she says.
Barbarin also wants to make it clear that she does not want to “overcome” her disability. She doesn’t apologize for herself and is ready for a change in the way society represents both black people and disabled people.
“In terms of the media portrayals of disability, it is [is currently] The point is that non-disabled people feel better by comparison, ”she said. “Our body is a litmus test of how much worse your body could be and how [much] you should be more grateful, because you could be us. “
Alyson Patsavas, Ph.D., co-produced the film “Code of the Freaks,” an in-depth study of how films address on-screen disability.
“I really hope that people with black and brown disabilities can at least find themselves on social media,” said Barbarin. “We need to be seen by the public and society because we exist and are here.”
The representation, or lack of, of people with disabilities in Hollywood and the media has long been a glaring problem. While 26% of the US adult population live with a disability, a study of the 100 Most Popular Movies of 2019 found that only 2.3% of speaking characters had a disability.
65% of these 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 study of how films address on-screen disability.
“If the only place you have access to is the movie, or if you’ve seen a disabled person and that story is the only narrative you learn about, it has a much bigger impact on your understanding of what a disability looks like could, “said she said.
These stories are everywhere, but Hollywood wants to force them into cookie cutter narratives, Patsavas said.
Nevertheless, there were more differentiated 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 in the Hulu comedy “Ramy”.
As an aspiring actress, Trush promised never to take on roles that turn her disability into a punchline.
“As I got older [I was] offered roles in commercials. But, [they would say]”You’re going to play an elf,” said Trush. “It was just about further portraying this stereotype. It does not help. That hurts the church. “
She said she couldn’t sleep because she knew she contributed to this stereotype, but she acknowledged that being able to say “no” is a privilege.
“I’m happy that I could say no because it can make such a difference around the world and contribute to ongoing change,” she said. “I am proud of my content. I like to tell myself that maybe the video will stick with them somewhere in the back of their minds. And maybe at some point they will take a small step to be more open and understanding, empathetic and thoughtful. “
Mackenzie Trush was born with a form of dwarfism called spondyloepimetaphyseal dysplasia, or SEMD. It is one of only 175 documented cases in history.
Barbarin said she was glad the community was getting some of the visibility it deserved.
“It’s always funny when people ask, ‘Where has this community been all this time? ‘ Exactly here. … We were here the whole time, ”she said. “And I think it’s our time. I really do. “
Comments are closed.