Man with Down syndrome works with brother to fulfill lifelong dream of becoming a movie star

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Luke Johnson hugs his younger brother, David Johnson. Luke Johnson hopes to make his younger brother a movie star. (davidmoviestar.com)

Brothers David and Luke Johnson were on a family trip in Hawaii when David met the girl of his dreams. He even got her phone number. But on the journey home, he lost it. David kept a photo of that mysterious girl on his dresser for years.

That experience inspired the Johnson brothers to create a film using the interaction as the inciting moment of the movie. Luke Johnson, a film and television producer in Provo, promised his little brother years ago he’d make him a movie star and they’ve been working to make that dream a reality ever since.

Growing up, Luke said he and David would perform skits and jokes and record it all on a VHS camera. When they weren’t making their own content, they’d watch ’90’s comedy icons — Chris Farley, Jim Carrey and Adam Sandler. However, even they weren’t funny like David is, Luke Johnson said.

“He is so funny situationally. Everywhere he goes, he cracks everyone up. Anyone who knows him is like, this guy should be a professional comedian,” he said.

The movie is motivated, in part, by Luke’s desire to share David — his joy, his humor, his energy — with the rest of the world, because representation of people with disabilities isn’t very common, he said.

For much of his life, David encountered well-intentioned people who didn’t understand or know how to interact with him. But maybe a film like this could change that, Luke said. “Hopefully people will see this (movie) and be like, ‘I’ve got to find a best friend with Down syndrome because this looks like the greatest thing ever,’” he said.

Born into a world that didn’t understand

When David was born, Gina Johnson, David’s mother, said expecting parents couldn’t know whether their baby had Down syndrome until after they were born. So the news came as a shock to her and her husband, Curt Johnson.

“(Curt) laid his head on my chest and he just sobbed,” she said.

Gina Johnson cooks with her son, David. She played an active role in his education, even teaching sign language to his classmates for yeas to help them communicate with David. (Photo courtesy of Sharing Down Syndrome)

Gina said she remembered a social worker dropping off a few books, meant to be helpful resources, but when she opened them, she was ambushed by facts she described as cold and insensitive: the high divorce rates of parents of kids with disabilities, the frequent decision to send disabled children to institutions and the extent of developmental delays.

Gina said as she read, she thought, “‘I can’t do this.’ I literally cried myself to sleep that night. I’ve never been so depressed in my whole life.”

Before David was born, she didn’t know much about Down syndrome — and it quickly became clear the people around her didn’t know how to grapple with it either.

She said nurses treated her with somberness and severity — a stark contrast to the excitement she received during the births of her other babies.

As David grew up, people told her, “He needs to be with people like him.” Practitioners and friends reminded her that David wouldn’t, and couldn’t, be a dentist like his dad. Once, she said she even had a stranger tell her she should have had an abortion.

“I thought, ‘David, you’re not even three days old and the world hates you,’” she said.

But even though it was hard, and took time, the overwhelming fear and sadness that defined the beginning of David’s life eventually dissipated. In its wake, she said she found a purity and a love within David that was entirely unique. “He needs to be in the world,” Gina said. “The world needs him.”

Luke Johnson wants to make his little brother, David Johnson, a movie star. He said he hopes their crowdsourcing campaign will raise enough money to fund the project in full. (Video courtesy of davidmoviestar.com)

Sharing David with his community

The Johnson family moved from Utah to Gilbert, Arizona when David was one. The move was prompted by his mother’s desire to keep David as integrated as possible. Options were better in Arizona, she said. David graduated high school without ever having been in a special education class.

When David was young, Gina she said could barely say the words Down syndrome. But now, she said her friends can’t get her to stop talking about it.

“Someday, somebody is going to have a baby with Down syndrome, or their best friend will, or their sister or brother. And instead of feeling like I did, like it’s the end of the world, they’re gonna say, ‘Oh, wait, I know, David,’” she said.

In Gilbert, Gina started a nonprofit organization, Sharing Down Syndrome. Nowadays, she visits new mothers of kids with Down syndrome and offers them the support she wished she had when David was born.

The importance of proximity

In psychology, the contact hypothesis says that contact between different groups can promote tolerance and reduce bias. In fact, some research asserts “all that’s needed for greater understanding between groups is contact, period, in all but the most hostile and threatening conditions.”

Luke and David hope their film can be a tool for proximity, something that promotes interactions between disabled and non-disabled people. Representation of disabled people has gotten better in the past decade or so. Some scholars contend those representational strides, specifically in television, might have played a role in softening broader attitudes towards people with Down syndrome. 

“We’ve come a long way,” Gina said, “But we’ve still got a ways to go.”

“Contact hypothesis” can be applied in a number of different ways. These sorts of interactions can decrease bias. (Created in Canva by James Hoopes)

Luke said one of the reasons their film is important is because David’s experience is one that’s underrepresented in the already sparse arena of media about disabled people.

“David can’t memorize a screenplay worth of material. But we should tell many stories about people with Down syndrome. And not just people with Down syndrome who are very high functioning,” he said. For that reason, much of the movie will be improvised, led by David and his impeccable comedic timing, Luke said.

Adam Woodall, a media arts major at BYU, agreed. He said media, particularly documentaries, provide opportunities to see people authentically. He made a short documentary about his older sister, who has Down syndrome, and submitted it as part of his application to the film program.

Woodall wants to see more positive representations of people with Down syndrome. “It makes me happier when I can understand people.” Media, he said, helps him do that.

Strides in Provo and beyond

For those who don’t know where to start, media, like David’s movie, could prove helpful, but one need not wait for the film to drop to get involved.

Courtney Isaac is the Executive Director of BYU’s chapter of Best Buddies. She’s been building relationships with the Down syndrome community since sixth grade, when she met her best friend, Britney, in gym class.

Courtney Isaac stands with her childhood friend Britney (left and right) and with BYU’s Best Buddies club (middle). Britney was Isaac’s maid of honor. (Photos Courtesy of Courtney Issac)

Best Buddies offers an opportunity for college students to volunteer with disabled peers in their community. BYU is home to the largest Best Buddies chapter in the world, Isaac said.

“We go into it thinking we’re serving them. But I almost feel like volunteers get more out of it than the buddies,” she said.

Isaac said she’s seen families move to Provo because they have a child with special needs and know BYU has the opportunities, resources and support they’re looking for.

Both Isaac and the entire Johnson family testified to the power of foraging relationships with disabled people. Gina said while they “can get frustrated or discouraged” like anyone else, she’s noticed the special way people with Down syndrome epitomize “Christ-like love.”

Isaac noticed the same thing in her relationship with Britney. “She’s just as committed to our friendship, whether I live 1000s of miles away or I’m home for a bit. She’s constantly been there for me,” she said.

Luke said he feels just as strongly about David. “He’s just the greatest person ever made,” he said. “I know it. Anybody who knows him knows it. And soon — hopefully — the whole world’s gonna know it.”

Whether the film gets accepted in film festivals or picked up by a distributor doesn’t matter much to Luke. “What matters is I make this movie for David and show him up on the big screen so he can see that he’s a movie star,” he said.

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