"Damn It, That's Huge": Actors With Down Syndrome Are Finding More Work in Hollywood

Peanut Butter Falcon Still 1 - Zack-Gottsagen and Shia LaBeouf -Roadside Attractions and Armory Films Publicity- H 2019
Courtesy of Roadside Attractions and Armory Films

More casting directors and industry organizations are realizing that there are roles for talent with intellectual disabilities, a group that faces a "shockingly high" unemployment rate.

Zack Gottsagen is a movie star. 

In The Peanut Butter Falcon, a coming-of-age tale about a young man named Zak who runs away from a nursing home to pursue his dream of becoming a professional wrestler, the actor leads a cast of Hollywood A-listers, including Shia LaBeouf, Dakota Johnson, Bruce Dern, Thomas Haden Church, Jon Bernthal and John Hawkes. A major break for any fledgling star, the role was specifically written for Gottsagen, a former Special Olympics athlete with Down syndrome.

"I was 3 years old when I started acting," Gottsagen tells The Hollywood Reporter. "I really enjoy it."

Getting a film made that stars an individual with Down syndrome was not an easy task. Originally, Josh Brolin and Ben Foster were in talks to star alongside Gottsagen in the film (playing the roles that ultimately went to Church and LaBeouf, respectively), but co-writer-directors Tyler Nilson and Michael Schwartz wouldn't budge from having Gottsagen in the starring role.

"The directors went around to a bunch of other production companies but they all wanted to switch out [Gottsagen] with another actor," Chris Lemole, co-founder of Armory Films and a producer on Falcon, says. "For us, it was, 'You wrote this for Zack, Zack is fantastic, we’re making it with Zack.'"

"In order to effectively tell this story you needed to do it with someone who actually has Down syndrome. Otherwise, it would have defeated the purpose of the movie,” adds Tim Zajaros, Armory Films' other co-founder and another of the film's producers.

Gottsagen's role in The Peanut Butter Falcon is a landmark for actors with intellectual disabilities, leading an all-star cast in a major Hollywood production, but a wave has quietly been forming in recent years with stars such as Lauren Potter and Eddie Barbanell landing more substantial parts in high-profile projects. Potter broke out on Fox's Glee as a series regular from 2009 to 2015, and Barbanell starred alongside Johnny Knoxville in 2005's The Ringer and has booked roles on film and television projects such as Audience's Loudermilk, Comedy Central's Workaholics and 2011's Owen Wilson-led comedy Hall Pass.

"We started decades ago trying to talk to folks in Hollywood," says Special Olympics chairman Timothy P. Shriver, who also served as an executive producer on Peanut Butter Falcon. "We started in television, on ABC’s Wide World of Sports all the way back in the 1970s, trying to interest big networks in the idea that you could put people with intellectual differences on the screen."

Representation for the intellectually disabled community has been slow-going. According to the CDC, Down syndrome continues to be the most common chromosomal disorder, with one out of every 700 babies born in the U.S. estimated to have the condition. As of 2008, the most recent year with census data available, the CDC estimates 250,700 individuals in the U.S. have Down syndrome. Abortion rates of fetuses diagnosed with Down syndrome are roughly 67 percent in the U.S., while in countries such as Iceland, the number is almost at 100 percent. Coupled with a stigma that has existed for years surrounding the disorder, visibility for the community is low and, as a result, Hollywood inclusion of individuals with Down syndrome has historically been low.

"When I took my son on audition 15, 20 years ago, when they asked for someone with Down syndrome, we'd show up and quite often he'd be the only one with Down syndrome in the room. Everyone else would be some guy with overalls on," says Gail Williamson, whose son Blair is an actor with Down syndrome who has appeared on Scrubs, Nip/Tuck, CSI and more. "I had a casting director tell me that she sent out for people with Down syndrome and the agencies sent her all their comics," Williamson says. That call took place only 10 years ago.

Williamson works as an agent at KMR Talent where she leads the diversity department, which represents a number of performers with intellectual disabilities. Before that, she was the executive director of the Down Syndrome Association for eight years.

Williamson was instrumental in landing Barbanell his big break in The Ringer. He performed a scene from William Shakespeare's Romeo & Juliet for a group of agents and Williamson, impressed by Barbanell's performance, convinced the Farrelly brothers to cast him in the film. 

"My life changed a lot," Barbanell says of the role. "At first, people were afraid to see a movie that portrays people with disabilities, and when I was at grocery markets people were pointing and staring at me with fear and mumbling to each other. Then, when the movie came out, people recognized me, they wanted my autograph. That made me feel great. It boosted my self-esteem and I’m happy the movie promotes acceptance and inclusion and shows respect to everyone with an intellectual disability."

KMR is one of the leading agencies in representing talent with intellectual disabilities, but the industry overall has become much more focused on inclusion. In October, the Entertainment Industry Foundation launched a new campaign, Delivering Jobs, which aims to equip “neurodiverse” individuals with the resources they need to enter the workforce and motivate employers to hire, support and promote inclusive workforces. The initiative hopes to fight the "shockingly high" unemployment rate for people with intellectual differences in the entertainment industry. Over the past five decades, onscreen representation of individuals with Down syndrome, specifically, has been scarce.

"The National Down Syndrome Society is fighting for inclusion and acceptance every day — that includes in the entertainment industry," says Kandi Pickard, president and CEO of the advocacy organization. "Most studies put the rate of unemployment or underemployment for individuals with intellectual disabilities at more than 80 percent — this must be the next frontier for the disability community: tackling employment and meaningful careers for those with intellectual disabilities."

In 1975, Jason Kingsley made history as the first person with Down syndrome to be featured on a children's television program, Sesame Street, at just 15 months old. He went on to appear in 55 separate episodes over the next 12 years. He additionally booked roles on programs like The Fall Guy and Touched by an Angel. The next decade, in 1989, Chris Burke became the first actor with Down syndrome to land a recurring role on a broadcast television series, Life Goes On. As Charles "Corky" Thatcher, Burke earned a Golden Globe nomination and broke barriers for the intellectually disabled community.  

"After the second season of Life Goes On, we found that in restaurants where people used to ask us what Blair wanted to eat, they would now ask him, because they now had permission to talk to that face," says Williamson. "That was my introduction to the power of the medium."

Since then, a number of other performers with Down syndrome have booked roles in Hollywood productions, with notable highlights such as Belgian actor Pascal Duquenne's lead performance in 1996's The Eighth Day (for which he shared a best actor win at that year's Cannes Film Festival with co-star Daniel Auteuil), Paula Sage's BAFTA Scotland Award-winning turn in the 2003 drama AfterLife, Luke Zimmerman's recurring role on ABC Family's The Secret Life of the American Teenager, Jamie Brewer's starring turn on multiple seasons of FX's American Horror Story and Evan Sneider's role in 2010's Girlfriend, billed as the first English-language feature film to star a person with Down syndrome.

"It was a thrill," Brewer says of landing the American Horror Story gig, her first big Hollywood audition. Brewer had previously seen Ryan Murphy's Fox musical comedy Glee, on which her friend Potter starred, and was excited to work with him. After landing the role, she ran to IMDb to see who else was on the call sheet. 

Brewer sees herself as someone who has broken barriers. In addition to her numerous television roles (she's starred in multiple seasons of American Horror Story as well as an episode of Southland and a number of upcoming projects), Brewer also became the first woman with Down syndrome to walk the runway at New York Fashion Week in 2015 for designer Carrie Hammer.

"The best person you can be is yourself," Brewer says. "There are boundaries in the entertainment world, but it's about seeing what the hurdles are and saying, 'What can I do to break these?' It opens a lot of perspective for individuals that see you break those boundaries."

"Collectively, the actors in our diversity department made a big $50,000 the first year I was here," says Williamson. "This year, we'll make over $3 million. It's growing like crazy."

Currently, there are a few stars with Down syndrome who have recurring roles on network television. Jared Kozak voices the role of CJ on Nickelodeon's The Casagrandes, the first performer with DS to land a series regular role at the network; Cole Sibus (a current Special Olympics athlete who also plays on softball team the Whittier Dirty Dawgs) plays Cobie Smulders' younger brother on ABC's Stumptown; Evan Vourazeris stars as Tuck on Netflix's Ozark. Outside of scripted roles, A&E's docuseries Born This Way follows the lives of seven individuals with Down syndrome, and ESPN tapped former Special Olympics athlete Dustin Plunkett (who does not have Down syndrome but a separate intellectual disability) as an on-air broadcaster for the network at the 2015 World Summer Games and 2017 World Winter Games.

"I never thought in a million years I’d be in front of millions of people in the media, especially ESPN," Plunkett says. "When they first came to me, they’re like, 'Yo, Dustin, it’s good to have you as on-air commentary,' and then they really thought about it a bit more and they knew how much I knew about Special Olympics from all the way back to when we started in 1968. And they’re like, ‘Oh my God, he’s not just a commentator, he’s an analyst!'"

Seeing individuals with Down syndrome portrayed in media has an effect not only on the community, but also on those making the projects. Emily Kingsley, Jason Kingsley's mother, was a writer on Sesame Street when her son first appeared on the show in the '70s. That appearance eventually led to a role on Fall Guy, where a young Burke saw Jason's performance and became pen pals with Emily. Years later, director Michael Braverman (who would later create Life Goes On), asked Jason to star in a film he was working on. Jason was unavailable and so his mother recommended Burke for the role, which eventually led to Braverman creating the role of Corky in Life Goes On. Glee creator Murphy told Entertainment Weekly in 2012 that he wanted to "feature a kid with Down syndrome [in a way] that has never been done before" with the role of Becky (Potter) on his Fox program.

"I was given a chance of working on a comedy that was so different than anyone with a different ability had ever done before," Potter tells THR. "I think I proved that I am a good actor."

Still, as for all actors, landing a big role doesn't mean the time in the spotlight will last forever. Potter says she's "still waiting for the next great role" to come along. "I want someone else to give me the chance that Glee and other shows have given me," she says.

"We are frankly in a comparison-driven business, meaning studios, and most of the buyers, if they don’t have an apples-to-apples comparison to another movie they know has worked, it scares them," says Zajaros.

Lemole hopes that Gottsagen's role in Peanut Butter Falcon helps "kick in doors" for similar projects to get the green light in the future. 

"It’s huge!" says Shriver. "There’s just such a relief that someone sees them as human beings, as attractive, fun, exciting."

"He has no disabilities when he was acting," Williamson says of her son. "That's the moment that he is exactly who he should be, and he does a really great job at it."

"There is beauty and talent in all of our community. I urge those who are making hiring decisions to think differently and learn about those with intellectual disabilities and how they can enhance and make the industry more impactful for storytelling," says Pickard.

Being onscreen is just one half of the battle for representation, however. The actual depth of the role is a much bigger aspect. "If you’re going to try to force something in just for the sake of doing it, it’s not going to work," says Lemole.

"I had a slogan for Coca-Cola eight years ago and there was no response," says Barbanell. "I advocated for people with disabilities and Special Olympics to be in commercials, TV, films and there was no response."

Shriver says that while there have been "some bright spots" for Hollywood representation over the last 20 years, there are also lingering "glaring problems."

"Much of the representation was about pity or mocking," he says.

Shriver points to various comedies (from film and TV shows to late-night hosts' monologues) that have used individuals with intellectual disabilities as the butt of jokes and specifically points to 2008's Tropic Thunder as a glaring offender. In the film, writer-director-star Ben Stiller's character, Tugg Speedman, plays a washed-up action star attempting to reboot his career after a string of poorly received films. One such role was that of "Simple Jack," a portrayal of an individual with intellectual disabilities that is a source of much ridicule throughout the film from Speedman's co-stars. At the time of release, the Special Olympics condemned the film for its repeated use of the word "retard" and multiple disability advocacy groups objected to the film and called for boycotts. 

Both Stiller and co-writer Etan Cohen defended the film, stating they "were making fun of the actors who try to use serious subjects to win awards," pointing to examples such as Sean Penn's Oscar-nominated role in 2001's I Am Sam and Dustin Hoffman's performance in 1988's Rain Man (for which he won a best actor Oscar. The film itself won best picture).

"I know a lot of people don’t want to go back over that because it’s sensitive and controversial and painful for a lot of us, but the general reaction from the people I talked to involved in the making of the film, was that 'No one told us. How could we have known that you weren’t supposed to say, "You don’t go full retard?"' And our response is, you should have known," says Shriver. 

Roles like Gottsagen's in The Peanut Butter Falcon represent a major shift from the old guard, allowing performers with disabilities to portray nuanced, complex and conflicted characters with intellectual differences. Zajaros sees Gottsagen as a legitimate awards-season contender and is leading a campaign for the star to earn an Oscar. 

"This is a great performance from a great actor who just so happens to have Down syndrome," says Zajaros.

"A lot of casting people have producers telling them now to fill roles with someone diverse," says Williamson. "We're starting to get people to understand what we wanted all along. We don't want the story to be about the disability."

"It has gotten better, but I still think there's work to be done," Barbanell says. 

Shriver is happy to see Hollywood becoming more inclusive for people with intellectual disabilities and maintains that Gottsagen's role is a major step in the right direction. "It’s a big change and it’s a good one," he says. "Zack is an aspirational figure and people want to be like him. God damn it, that’s huge."