Zack Gottsagen: The actor with Down's syndrome who could scoop an Oscar

He is the 34-year-old breakout star of a new film alongside Shia LaBeouf and Dakota Johnson – and he's already being tipped for awards. Now can Zack Gottsagen change the way studio bosses view disability? Interview by Ben Hoyle.

You have not seen anything quite like The Peanut Butter Falcon before. Nobody has.

It isn't intimidatingly different. There are big-name stars. The cinematography is breathtaking. The script blends humour, grit and fairytale wonder to winning effect.

But you won't be talking about any of that. You'll just be raving about Zack Gottsagen.

The unknown 34-year-old makes his big-screen debut (opposite Shia LaBeouf and Dakota Johnson). Unlike every other person who has ever played a lead role in a mainstream Hollywood film, Gottsagen has Down's syndrome.

And he is fantastic.

We meet his character, Zak, in the opening moments: a young man who dreams of stardom, is desperate to break out of the retirement home he's been forced to live in and is trying to bribe the elderly residents to help him do it. At bedtime he is called "retard" by a care worker. Shortly after that, Zak greases up his plump body, squeezes through a gap in the window bars and sprints into the night clad in nothing but his white underpants.

The film, as it unfurls from there, contains no jarring surprises. The film-makers have simply thrown together a mismatched pair of outsiders – the escaped disabled man and a grief-stricken fisherman who is also on the run – and set them on a journey of self-discovery through a picturesque Deep South landscape.

There is moonshine drinking and banjo music. Nobody watching will be shocked to learn that our heroes and the woman who joins them go on to forge a life-altering connection.

It works, though, not least because by the end of the film Gottsagen has delivered a performance so captivating, so polished and so emotionally powerful that it has the potential to change, for ever, the way that studio casting directors think about disability.

There is a lot of catching up to do.

Tyler Nilson and Michael Schwartz, the writer-directors, struggled for years to get their film funded. When they did get people to read their script, discussions took a predictable turn, Schwartz says. "Producers said, 'OK, we'll do it like Rain Man. Let's get a really famous actor to play this Zak character and we'll give you a couple of million bucks.' And we said, 'No, that's not how we're doing it.' "

They wanted Gottsagen, their friend.

"Dustin Hoffman did a great job [as the autistic character in Rain Main]. Tom Hanks did a great job [as Forrest Gump, a character with an unspecified learning disability]. That's how they used to do a story like that. But Zack was the best actor for the role, regardless of having a disability or not," says Schwartz.

Eventually Nilson and Schwartz got Oscar-nominated producers on board, a major cast and a budget of several million dollars.

That made Gottsagen's first day of shooting in Georgia all the more terrifying. "We didn't know how he would act or react in a situation where there were 100 people and lights," Nilson says. "It was a risk. All eyes were on us. Nobody had asked to see Zack do lines."

His first scene was with LaBeouf. Immediately Gottsagen was "doing improv and saying things better than we had written them", Nilson says. They shot an entire complex montage in 40 minutes. "I had been stressed. I'd spent three years of my life leading up to that place, telling people Zack can do this. I didn't really know." The moment that shooting ended for the day, "I started sobbing. It had worked. He did it. He was in a scene with one of the best actors of our generation and holding his own. I was like, 'He can do it. Not only can he do it, but he did it better than I even thought he could.' "

A great deal has changed in his life since the six-week shoot in 2017. He is now someone who visits LA for "meetings" to explore future projects, which is why he is here. He has signed with a manager, whom he shares with Jordan Peele, the director of Us and Get Out. He has become firm friends with a pair of major movie stars. According to his mother, Gottsagen remains "very close" to both Johnson and LaBeouf. LaBeouf, for his part, has repeatedly said that meeting Gottsagen turned his life around after it almost spiralled out of control.

Gottsagen is preparing for his first trip abroad, to this month's London Film Festival for the UK premiere of his film. He has already seen it receive a standing ovation and an audience prize at the South by Southwest festival (SXSW) in Texas. He has been on America's two top-rated morning chat shows. He has been part of a panel for a screening hosted by the people who organise the Oscars. His film has become both an underdog Academy Awards contender and a box-office hit, taking more than US$16 million in its first few weeks, before any international rollout.

None of this seems to surprise Gottsagen, who has an invincible self-belief. The way he sees it, he worked hard to earn his break and is now merely reaping the rewards for a lifetime of effort. "I am a very good actor," he explains. "I want to show people my talent."

Is it the process of performing or the response you get for doing it that you like more? He thinks. "Uh, actually, everything."

Gottsagen has been acting since he was three (he played a frog in his first role). As a young child he was obsessed with performing. One morning at the bus stop, his mother realised that she had forgotten to pack anything for his show-and-tell session. She sent him inside to find something. "He came running out with the toilet plunger. He sang into it. He thought it was a microphone."

Her son honed his craft at one of America's top arts-focused high schools before joining a dance theatre group 13 years ago. He has taught acting and dance at his local Jewish community centre and been involved for the past decade with Zeno Mountain Farm, a charity that puts disabled and able-bodied actors together with film-makers to make short films. One of those films, in which Gottsagen stood out, became the subject of an award-winning documentary. That led to an invitation to be the keynote speaker at a Smithsonian museum in 2015 to mark the 25th anniversary of the Americans with Disabilities Act.

In 2011, he befriended Nilson and Schwartz at Zeno Mountain Farm at a time when the pair's combined film-making credentials amounted to a handful of short documentaries and videos. About a year later, he confided to them that he was serious about becoming a movie star. "We were like, 'Zack, there's not a ton of opportunities for people with disabilities,' " recalls Nilson. "Zack was like, 'Well, let's do it together. You know, you guys are writer-directors and I'm a movie star in the making, so let's go for it.' "

Nilson realised then that his friend was not mucking about. "He was like, 'This is not playtime for me. This is my life,' " the director says. "I think it's really common to think, 'Oh, I see a glass ceiling, so I'm not even going to approach it.' Zack just believes, 'No, I can do anything. I can be a movie star.' " That makes things happen. "The other day he told us, 'Justin Timberlake is going to do a dance video with me.' " Gottsagen has never met Timberlake, but apparently he loved the film.

"I actually wouldn't be surprised if next week Justin Timberlake did a video with Zack," says Nilson. So I put this question to Gottsagen: everybody else had doubts; did you really always believe that The Peanut Butter Falcon would get made? "Oh, yeah," he says decisively. Did you always know it was going to be a hit? He grins, the expression of a man you would never want to disappoint. "Yes."

"When he was born [in New York], they told me he would never walk or talk. There were all these doctors in the room and they kept telling me he'll be a total vegetable. Finally I just looked at them and said, 'That's fine. I'm a vegetarian, so I'll take my vegetable to go.' And I just picked him up and walked out with him."

Gottsagen, noticing before I do how emotional this is for his mother, moves his chair closer to her. When tears begin to well in her eyes, he gets up and hugs her.

As a child, Shelley had a friend with Down's syndrome. Subsequently she had been active in the disability rights movement. During her pregnancy, she had dreamt that she was carrying a disabled child. She was only 29 and had no reason to suspect it.

The diagnosis was not easy to hear. "I gave myself 24 hours to grieve and then I said, 'That's over with. I have a beautiful child.' "

When he was ten months old, Gottsagen developed severe respiratory problems. "They wanted to put a tracheostomy tube in him because he couldn't breathe," his mother says. She was told that he would need artificial heat unless he went to a warmer climate urgently.

"I had to quit my job and leave everything behind. I took my dog, my cats and my kid and drove south. Picked up my sister along the way. One of us made sure he was alive while the other one drove."

They settled in Florida. "I had to find a job and childcare. Nobody would take a child with disabilities into childcare. I went to a hundred different centres until I found somebody who could watch him."

Work was easier to find. She took a low-paid job at the daycare centre where he was enrolled, where she got to meet lots of families of people with disabilities. "The ones that had the best outcomes were the ones whose parents didn't accept their disabilities. Rather than overprotect, which is your instinct as a parent, I realised that he needed to be in regular childcare and in regular school."

The fights came thick and fast, starting with a battle to get him into school. Shelley won by signing him up without mentioning his disability and then not backing down.

At around the same time, she filed one of the first lawsuits under the new Americans with Disabilities Act to enable him to play Little League Baseball. "His third game, they realised that he had Down's syndrome and said he couldn't play." The American Civil Liberties Union, looking for a test case, offered to represent them and won a settlement that obliged every coach and assistant coach to be trained in including children with disabilities.

The stand-off was recounted in a story in the South Florida Sun Sentinel in 1993. Shelley told the reporter: "I just wanted him to be able to play ball … That's all I signed him up for. I didn't sign him up for a lawsuit."

That same year, Shelley adopted a daughter. She did it solely because of her son, who "wanted a baby sister more than anything".

Elysha, now 26, was always athletic. She currently works for the Miami Dolphins American football team and the Miami Heat basketball team. Gottsagen likes swimming, running, baseball, football and bowling (he's on a team for that).

As a young child he always used to watch Life Goes On, a groundbreaking TV drama about a suburban Chicago family, one of whom happened to have Down's syndrome.

He tells me that its disabled star, Chris Burke, is the actor he most looks up to. "Normally I was pretty strict with him. We had dinner at the table," Shelley says. "But every Sunday night, we set up our little TV trays and watched Life Goes On together. Once we went to a conference and the actor was there. Zack was little and ran over to him and just went, 'You're my hero.' And the actor turned to Zack and went, 'You're my hero.' They hugged each other. I think that's what made him want to become an actor."

That's who Gottsagen is now for a new generation. Is he aware of that? "Yes," he says, comfortably. Does that add pressure? "Um, no. A lot of people come to me. I'm a role model."

So, do you ever get nervous? "No." Are you scared of anything? Gottsagen smiles broadly. "No, nothing." His mother confirms: "Zack has never experienced nervousness. I raised him with praise and applause."

When Gottsagen was ten, he asked his mother when his Down's syndrome was going to go away. "My daughter was three and we used to go to meetings for families with children with Down's," Shelley remembers. "When she found out that she was not the one with Down's, she was so angry. She went, 'He gets everything.' " At the same time they were going to meetings for multiracial families, because Elysha is black. The children were equally uncomprehending about racial differences. Eventually, Shelley explained to Gottsagen, "Elysha's black and we're white. And he goes, 'No, we're beige and she's brown. What are you talking about?' "

Both children faced prejudice, usually traceable back to adults in their orbit. "They always say kids are cruel," says Shelley. "I don't think they are. I think they learn cruelty. Because when Zack was little, he was always with all kinds of friends. Friends with and without disabilities. Friends of every colour."

Adam Sussman, 35, was one of those friends, and helped to organise a group with Gottsagen at high school to bring disabled and non-disabled children together. "He was full of positivity and excitement for life," Sussman remembers. "His energy was contagious and he wasn't shy to befriend people."

When Gottsagen learnt that Sussman, whom he hadn't seen in years, now lives in LA and works in television, he invited him to hang out at his hotel, then brought him along to a screening at the Screen Actors Guild and gave him a shout-out from the stage.

Not everything about school came easily. I ask Gottsagen about his acting technique. There's a powerful scene where he and LaBeouf are discussing wrestling and Gottsagen's character says, "I can't be a hero because I am a Down's syndrome person." There's a lot of pain behind that line. "Yeah," says Gottsagen, becoming increasingly animated. "Um, actually, my pain is about my school. At middle school, those teachers didn't care about my acting very much. And at high school, a teacher rejected me." According to him, this teacher did not notice that he was a "good actor" and just looked out for her own daughter, who got lots of roles. "How about me? [What if] I had that chance too?"

"That pain was real," says Shelley. "He would try out for roles and some of them made so much sense for him. I even said, even if he doesn't have a speaking role, wouldn't it give authenticity to the play to have someone with Down's syndrome? [The teacher] was opposed to him even coming to the school. We got the Office for Civil Rights involved and the school was almost shut down."

Shelley pushed her son to be independent. From the age of 11, he was taking buses to school. In his early twenties he got his own flat, a few blocks from Shelley and Trish. "It was scary as hell," says Shelley. But she thought it was crucial for his self-esteem that he moved out before his sister.

Parents of young people with disabilities have for years asked Gottsagen to take their children out to "teach them how to navigate the community", Shelley says. "He's always been incredibly responsible. He'll walk into a room and go, oh, that cord is sticking out too much and somebody might trip."

So when the opportunity came up to make The Peanut Butter Falcon, she wasn't worried about leaving him on set in Savannah while she held down two jobs in Florida. "He had this suite at the hotel and his own trailer. The first day there, I'm at work and I get this picture he sends me. He's sitting wearing a white robe, eating breakfast, on a yacht."

Gottsagen bonded quickly with his co-stars. He and LaBeouf would watch wrestling every Monday and Tuesday night and make up rap lyrics (Gottsagen loves hip-hop).

"Dakota would take him when she went for a pedicure. She thought it was funny because he has super-ticklish feet and would just die laughing. They became really close."

At the end of a day's filming, Gottsagen would take the bullhorn and thank people in the crew for contributions he had noticed, Shelley says. "He would just call them out and say: so and so, that was the best chicken I ever had; you drove that van so well – look how safe we've all been. Everybody felt valued."

Then, one day halfway through filming, a drunk LaBeouf got into an argument with a police officer and ended up in a police station in handcuffs, cursing obscenely and firing off racially loaded insults. The footage ended up on a celebrity news website. It was the latest, and by far the most damaging, evidence of erratic behaviour by the actor and it threatened to turn him into an industry pariah.

How did you feel then, I ask Gottsagen. "Not good," he mutters.

The very next day, he went to a party with the cast and crew. LaBeouf arrived. It was awkward for everyone. Nobody knew what to say to the film's biggest star. "Zack confronted him," says Shelley, who was there too. "He said, 'This is my one chance. Don't blow it for me.' And the two of them sat down and they cried together and Shia made a promise. He said, 'I will not have a drink the rest of the time we film.' And he's never had a drink since then. It's been more than two years."

LaBeouf has talked about that conversation too. "To hear him say that he was disappointed in me probably changed the course of my life," he said last year. "Zack can't not shoot straight, and bless him for it, because in that moment I needed a straight-shooter I couldn't argue with … He didn't pull punches."

Slightly awkwardly, I ask Shelley about his romantic relationships. "He was engaged," she says. "He was in a relationship for about ten years, but they split up. He wanted to get married and they went and talked. Her mum and I waited outside the restaurant. They came out smiling and said, 'We both realise that we need to grow more as individuals.'

"But he has a date tonight. He met somebody yesterday. They're having dinner."

Actors with Down's have appeared on screen before, but never in a film with such box-office appeal or sharing top billing with A-list stars.

So would it be surprising for Gottsagen to end up with an Oscar or at least a nomination for his performance? Perhaps it should be more shocking if he doesn't.

Written by: Ben Hoyle

© The Times of London