Krista Vernoff, Shoshannah Stern break down bringing the first Deaf doctor to ‘Grey’s Anatomy’

from Variety: 

When “Grey’s Anatomy” introduces Dr. Lauren Riley in its Feb. 13 episode, “Save the Last Dance for Me,” it marks more than just Shoshannah Stern’s (pictured) debut on the long-running drama: Dr. Riley is also the first recurring deaf doctor on a primetime network series. 

To tackle the groundbreaking character, Stern teamed up with “Grey’s Anatomy” showrunner Krista Vernoff, who initially didn’t realize this would be a historic first.“I didn’t know until we were on set shooting it,” Vernoff tells Variety, calling the vibe on set “electric.” “And that is the power of Shoshannah: I fell in love with her as a human, as a communicator, as an actress. I thought she was incredible and I wanted to put her on my show. I did not even know it had never been done before. That’s wild to me. And so to learn that on the day that she was working that this was the first deaf doctor who’s ever appeared on network television? How is that possible?” 

Stern met Vernoff on a 2019 Television Academy Foundation panel about representing disabilities in storytelling. “We just got to talking backstage, and she was talking about the lack of work, even though she’s put her own incredible show on the air,” Vernoff recalls. “And I was so smitten with her.” 

Vernoff suggested on the spot that Stern come play a doctor on “Grey’s Anatomy.” “I don’t know if I’ve ever invented a character because I fell in love with an actor,” Vernoff admits. 

The guest spot is also a literal dream come true for Stern, who had a recurring dream about being on the medical series a decade ago. “It was always just me walking around in scrubs with the other doctors like I was one of them,” Stern recalls. “I remember always having trouble adjusting when I woke up from these dreams, because they always felt so vividly real.” 

The first day on set felt almost dreamlike because she “felt super calm, like you do when you’re dreaming,” she explains. “Everyone was unbelievably welcoming and nice to the point that I kind of felt like I’d been there before. Members of the cast who I didn’t even have scenes with still went out of their way to come and say hello to me.” 

Prior to meeting Vernoff, the path to joining the show was bumpy, as Stern was let go by a manager a decade ago when they couldn’t understand why she declined to audition to play a patient on the hit drama. “It made no logical sense for me to turn down something real for something that wasn’t,” she says. “But something inside me was telling me not to.” 

Now, with Vernoff on her side, Stern was invited to the writers’ room to discuss coming on to the series, and the actress came prepped with her own research on deaf doctors. 

“I’ve always been fascinated with all the deaf doctors out there in the wild,” Stern says. “They’re all very different, but a commonality they share is that they seem to bring a special touch to their job. Some have actually invented medical technology to allow them more access, some of which you’re going to see in Riley’s episodes.” 

When Stern told the writers that deaf doctors traditionally make better diagnosticians than the average hearing doctor, the final pieces clicked into place. The writers then crafted a longer-term patient (Sarah Rafferty’s Suzanne), whose mysterious case would prompt DeLuca (Giacomo Gianniotti) to call in outside assistance. 

Although Stern’s characters in the past have been primarily English-dominant (using a combination of lip-reading and Stern speaking) — and many deaf doctors also utilize that way of communicating — the collaboration with the writers led to taking Dr. Riley in a different direction. 

“For Riley, I really wanted her to sign,” Stern says. “She deals with people’s bodies, and you use your entire body to sign, so I just thought it would carry a special kind of weight. My deaf cousin [who is also named Lauren] is a nurse that uses an interpreter at work, and my husband does a lot of video relay interpreting in the medical field, so the inspiration for me for how Riley would communicate was cross-bred between my cousin and my husband.” 

Working with Vernoff, episode writer Tameson Duffy, and director Jesse Williams, the quartet utilized technology to allow for Riley’s interpreter to communicate via an iPad, which was used in scenes with multiple characters. However, when she was one-on-one with someone (and when there were mobility concerns about being tied to the video screen), Riley would switch to lip-reading and English with her new colleagues. 

“The team at ‘Grey’s’ also reached out to some deaf doctors on their own to ensure what they were writing about was accurate,” Stern says. “It was just an absolute spectacular example of the magic that collaboration can bring, and I’m so grateful to Krista and everyone at ‘Grey’s’ for their commitment to that.” 

 

In portraying this trailblazing character, “it was most important to me that Riley was the best at what she did because, not in spite, of the fact that she’s deaf,” Stern says. “It was also important that being deaf isn’t something that defines Riley, it just adds a unique layer to her. I loved how it was executed on the page, too, because Riley does eventually kind of touch on how her being deaf has actually helped her be as good as she is, but she’s kind of an enigma in that you never really know what she’s thinking or why she’s saying what she is.” 

Off-screen, “the response has just been so profound,” even before the episodes officially air, Stern admits. “I’ve gotten tweets from other deaf doctors and deaf people in the medical field. One mentioned that they dropped out of medical school because stuff like face masks prevented them from being able to read lips. I remember freaking out on the table in the OR when I had an emergency C-section because I understood nothing anyone was saying because of these face masks too. I think that’s why some people will drive hundreds of miles to where there is a deaf doctor so they can be understood.” 

Stern also relied on her cousin Lauren to help her with the medical signs on the show. “There aren’t even existing signs for a lot of the medical stuff, or really science based signs in general, because the incidence of it being used is so low,” she says. “That’s a huge detriment in deaf people’ access to science and medicine, but we have people working on that now. It’s such an incredible feat and hopefully the more it’s utilized, the more it will spread and become normalized because that will provide more access and understanding for deaf patients when they go to the doctor. I hope that people will see Riley and realize that it can be a reality for them, too. So hopefully ‘Grey’s’ can also change lives in that particular sense.” 

“Grey’s Anatomy” airs Thursdays at 9 p.m. on ABC.

Al Jazeera explores why disability clichés are so destructive for the community

You can watch the 25-minute report here: https://www.youtube.com/watch?v=tLnSDa-OhPM&feature=youtu.be

"'Disabled people are lazy and just need to get off their self-indulgent butts and do some hard work.' That’s just one of eleven tropes on disability that author Cindy Baldwin [who has cystic fibrosis] listed in a Twitter thread exploring old-fashioned narratives of disability and how they make people with disabilities feel.

“'We are also so shaped with these narratives in a very ablest society and people don’t recognise these tropes are harmful. They have active real life connections to the way people are treated,' Baldwin told The Stream.

"In this episode, we will use Baldwin's Twitter thread as the basis for a discussion on how these tropes are used in the media, pop culture, literature, politics and more. And we will explore why accurate representation and authenticity are so important."

Also on the report were Lawrence Carter-Long, the Director of Communications for Disability Rights Education & Defense Fund (DREDF) and Maryangel Garcia-Ramos of the Mexican Women with Disabilities Movement (pictured).  

"Who Am I To Stop It," a documentary film on isolation, art, and transformation after brain injury directed by Cheryl Green, Cynthia Lopez

Reprint from the BMJ Medical Humanities blog:
https://blogs.bmj.com/medical-humanities/2020/01/28/who-am-i-to-stop-it/

If you are interested in showing the film or hosting a screening, contact filmmaker Cheryl Green at New Day Films. 

Review by Karina Sturm, filmmaker and journalist

Who Am I To Stop It is a feature-length documentary portraying three artists in the US who live with brain injuries by following them through their lives and capturing the social challenges they face due to their disability. The film illustrates how they try to find their way back into a new life using art.

This review is written from the perspective of a disabled journalist who focuses on representing people with disabilities in media, and who has seen too many stereotypical portrayals of that community. Who Am I To Stop It is different in its accurate depiction of an invisible and misunderstood disability.

I watched the three short films that have been excerpted from the full-length documentary, featuring Kris, Brandon, and Dani. The fact that I live with a disability myself was not the primary reason why the films caught my attention; it was because of their engrossing narrative structure. The filmmakers thematized its subjects’ challenges without enforcing artificial emotional responses. This documentary is not about telling a sensational story or a beautiful recovery journey; it focuses on the here and now and shows how people with a disability can find a new identity and a sense of self.

The first story was Kris’s, an artist creating intricate paintings. People don’t realize that she has a brain injury. They see her as “the eccentric artist,” and she often feels misunderstood. “If I didn’t have the art, I would be suicidal.” For Kris, her art isn’t only a job; it is a coping mechanism that helps her to survive in a world filled with people doubting her disability. Kris’s story does not end with a heart-warming resolution like other films do, but with a hard truth that many disabled people have to face: Kris loses her apartment and gets evicted.

The second short film was Brandon’s, who is a singer. He experienced traumatic brain injury after his car was hit by a truck. Brandon made peace with his past and fights hard to regain his independence. Presented in a humorous way that helps the audience empathize with his tragic fate, he talks about the fact that he is not allowed to go anywhere alone until he manages to find the right bus stop, catch the right bus, and then get off the bus at the correct location three times in a row. When he finally managed to complete this task, he joyously says: “It has been magic.”

The third artist was Dani. She is the youngest, who struggles the most to accept her limitations. Following her pain and self-doubts was deeply shattering, because it reminded me of my own journey. She can’t quite find the right way to come to terms with her disability. “If I knew this would’ve been my life, I would’ve asked to die. I hate life,” she says. One crucial aspect of Dani’s story is the fact that her family have a totally different perspective. It’s hard for them to see her unhappy, when they are just glad that she survived the brain injury. In the end, Dani finds her voice by rapping in a place where she fits in: an LGBTQ organization.

The film tone and narrative make one assume that one or both filmmakers are disabled themselves because they know exactly the right questions to ask, and the people in the film feel comfortable to confide in them. The film protagonists were engaging, but without being emotionally manipulative. Moreover, Who Am I To Stop It is highly educational. Right from the beginning of Kris’s story, we see her in a doctor’s office, where she talks about her symptoms. The way Kris describes the effects of her brain injury immediately gave me a sense of what she had to deal with daily as a disabled person. I also appreciated the filmmakers providing closed captions and descriptive audio throughout the film. It is obvious that they had the disability community in mind when they produced those films.

In summary, all short films felt honest and real. They were short enough to keep my attention but long enough to provide the necessary information to understand and relate to its contributors. Who Am I To Stop It is one of a few films that accurately portray disabled people, and this alone makes it incredibly worthwhile.

Watch the trailer here.

Conflict of Interest statement from Karina Sturm:

As I was working on my own documentary film about living with EDS, another disabled media maker put me in touch with Cheryl. We have since formed a friendship discussing everything from Audio Description in film to ableism and the lack of disabled media makers telling our own stories. My review of her films was not a favor to Cheryl, but my honest opinion about Who Am I To Stop It as a fellow filmmaker and journalist.

Who Am I To Stop It is a fiscally-sponsored project of The Hollywood Theatre and is distributed by New Day Films.

Correspondence with the reviewer: https://www.karina-sturm.com/en/contact/

"Crip Camp," documentary on a summer camp that inspired disability rights, premieres at Sundance

From Berkeleyside:

The disability rights movement in Berkeley takes center stage on the opening night of the Sundance Film Festival in the film “Crip Camp,” a documentary that traces the infancy of the movement to a revolutionary summer camp tucked away in upstate New York. 

Directed by Bay Area filmmakers James “Jim” LeBrecht, a Berkeley resident, and the Emmy award-winning Nicole Newnham, the film premieres Thursday at the festival in Park City, Utah. It is one of the first films that Barack and Michelle Obama produced for Netflix. 

“Crip Camp,” tells the story of how a summer camp for disabled teenagers helped give birth to an important but sometimes overlooked civil rights movement in the 1960s and 1970s. 

Before the Americans with Disabilities Act (ADA) was passed in 1990, there was no federal law that prohibited discrimination against individuals with disabilities. 

Institutionalization was more common than it is today. But the teenagers who attended Camp Jened, a summer camp for teenagers and adults with disabilities, imagined a brighter future. A group of campers found community and camaraderie during their weeks in upstate New York in the 1970s, and Camp Jened served as an incubator for the disability rights movement. Many of the campers later moved out west to Berkeley, where the struggle for equal rights and representation was already well underway. 

“Berkeley as a city is the home of the disability rights movement so it makes perfect sense that this film would be coming out of the Bay Area,” says Berkeley City Councilwoman Susan Wengraf. 

“Crip Camp” director was a part of the movement 

LeBrecht, the founder of Berkeley Sound Artists, an audio post-production house, and the co-director of “Crip Camp,” was among the group of campers that landed in Berkeley in the 1970s. “Crip Camp” is told from the perspective of LeBrecht, whose long history of activism on the part of the disabled started in high school and carries through to today.

LeBrecht, who declined to talk to Berkeleyside ahead of the movie’s release on Netflix, was born with Spina Bifida, a condition that occurs when the spine and spinal cord don’t form properly and often results in restricted mobility. LeBrecht was born in an era where individuals with disabilities had limited, if no, options in terms of accessible living, workplaces, and transit. When he was a young child, he navigated the stairs of his split-level childhood home by crawling or climbing, he told SFGate. 

But LeBrecht’s parents didn’t want him to live a sheltered life and he worked hard to ensure his opportunities were not limited by his physical disability, he told the newspaper. He became active in the disability rights movement in his teens and helped start the Disabled Students Union at UC San Diego, according to Catapult Film Fund.
Lebrecht worked as Berkeley Repertory Theater’s resident sound designer for 10 years and worked in sound design at the Saul Zaentz Film Center and at Skywalker Ranch. 

LeBrecht has had immense success as a sound designer, with more than 179 film credits on IMDB.

“When I was growing up, people like Jim were institutionalized, they were shut out of society,” says Wengraf. “I’d love to meet Jim’s mother someday. She must be an extraordinary woman. She raised Jim with an enormous amount of self-confidence and the belief that he could do whatever he wanted. That was an extraordinary thing for the time. She was on the cusp of the disability rights movement.” 

LeBrecht is a former colleague of Wengraf’s husband, Academy Award-winning sound designer Mark Berger, and has known the family for many years. Similar to LeBrecht and Camp Jened campers, Wengraf told Berkeleyside that she came to Berkeley in 1969 on a mission to help children with disabilities express themselves through filmmaking and photography. 

“I think film is a powerful medium for telling any good story,” said Wengraf. “Film has the capacity to envelop you in an experience, unlike any other medium. I’m sure [“Crip Camp”] would be a good book but I think film is more effective at telling this kind of story.” 

The history of activism for disability rights in Berkeley 

By the time Wengraf and the activists from Camp Jened arrived in Berkeley in the 1970s, the struggle for equal rights for the disabled had already started. In 1962, Ed Roberts, the University of California Berkeley’s first student with severe physical disabilities, started a protest group called the Rolling Quads, whose activism helped establish the first Disabled Student’s Union on campus back in the 1960s. 

Ten years later, the work of activists such as Roberts, Hale Zuckas, and Jan McEwan Brown led to the opening of the Center for Independent Living, Inc. (CIL) in 1972, an organization dedicated to peer support and helping persons with disabilities lead independent lives. The CIL is still active today and is connected to the Ashby BART station at the Ed Roberts campus. 

Telling the story of the disability rights struggle 

“Crip Camp” might elevate the history of the disability rights movement, which is lesser-known in Berkeley than other protest movements born here. 

The film is included in the first slate of films being produced by Higher Ground Productions, the Obamas’ film company, which is devoted to telling the stories of civil rights pioneers. 

By recognizing a story about the struggle for disability rights alongside stories of other civil rights movements, Netflix and the Obamas are helping bring more awareness to this often overlooked and underrepresented movement, says contributor Sarah Kim in an editorial for Forbes. 

Wengraf expressed similar feelings, saying the support of Michelle and Barack Obama is an enormous honor, noting “…it’s kind of a dream for every documentary filmmaker to be acknowledged in this way and get this kind of boost, it’s phenomenal. This is a dream come true for Jim and everyone else who thinks this is an important story to be told.” 

Wengraf says she has a vision for a museum in Berkeley’s Civic Center that would have a wing devoted to the disability rights movement, alongside other important moments in Berkeley’s history. 

“I think this is a very important story to be told [and] it’s going to be up to us, it’s not necessarily our issue, it’s going to be up to us to bring it to the public realm,” says Wengraf. 

Netflix will be releasing “Crip Camp” in spring 2020.

"Everything's Gonna Be Okay" explores grief, love, autism, with autistic character played by autistic actor Kayla Cromer

From Teen Vogue:

Freeform's new comedy Everything's Gonna Be Okay is unconventionally hilarious. Set in California, the show explores how three siblings cope with the sudden loss of their father.

Nicolas, played by Australian actor Josh Thomas, steps up to be the father-figure of his two teenage half-sisters: an angsty Geneviene (Maeve Press) and Matilda (Kayla Cromer, pictured), who has autism.

The show screened for an intimate audience at Chicago's Davis Theater on Tuesday and was met with laughter and applause.

What sets the show apart from other family sitcoms is that it bluntly unpacks grief, sex, love, and independence in a darkly humorous way. It also makes history as the first show to ever cast an actor on the spectrum in a lead role. 

"Everyone that's been cast as a character with autism doesn't really have that disability themselves," Kayla, who plays the outspoken but kindhearted Matilda, says. "So how can they expect to act like one of us, when they haven't walked in our shoes?"

Previously a model, Kayla was one of the first actresses to audition for the role and landed it soon after. And while she's thrilled with the opportunity to give nuance to what it's like having autism, she's also well aware that there should be more representation on big and small screens of people with neurological disorders.

"I know there's always going to be people that won't like my performance and [others] will like it," she says. "But in reality, one character with autism can't represent every person with autism — everyone is different. We all have our different quirks. Not all of our brains are alike."

Read more about Cromer here. 

Everything's Gonna be Okay premieres Jan. 16, 2020 on Freeform.

Social anxiety family comedy, 'The Healing Powers Of Dude,' lands on Netflix January 13

From Romper:

Adding to its selection of wholesome shows for the entire family, Netflix is dropping a highly-anticipated new comedy about an 11-year-old boy with social anxiety disorder and his (talking!) emotional support dog. Thankfully, you won't have to wait much longer to catch this series, which is sure be a heartwarming story for kids and adults alike. In fact, Netflix shared The Healing Powers of Dude's release date exclusively with Romper and good news: it's right around the corner. 

The first eight episodes of The Healing Powers of Dude will land on Netflix on Jan. 13, 2020. Described as a live-action family comedy, the series centers on Noah, an 11-year-old boy with social anxiety disorder, as he transitions from homeschooling to middle school with the help of his emotional support dog Dude. Although he's described as a "sarcastic" mutt, it turns out that Dude (voiced by Steve Zahn from Diary of a Wimpy Kid and That Thing You Do!) might need Noah (played by Jace Chapman) just as much as Noah needs him.

Husband-and-wife team Sam Littenberg-Weisberg and Erica Spates co-created the series based on their personal experience with social anxiety disorder. While a comedy, the series touches on very real things, like how Noah's social anxiety can make what may seem like simple, everyday activities, feel like being submerged in quicksand.

So when Noah decides he wants to start at the local middle school after years of being homeschooled, his parents (played by Tom Everett Scott and Larisa Oleynick) bring home an emotional support dog to join him on his new journey. According to U.S. Service Animals, the official service and support animal registry, an emotional support animal's main role is to provide emotional support and comfort to their owner both throughout the day and in times of distress. 

Unfortunately, Dude isn't the most experienced emotional support dog and his short attention span and obsession with treats result in a number of comedic hijinks. Still, the dog's got charm and spunk, and ultimately, wants nothing but the best for his new best friend.

While kids will get a kick out of Dude, the show is likely to have parents laughing as well as it reunites Zahn with his That Thing You Do! co-star Everett Scott. "Tom is one of my oldest friends so it was inevitable that I would eventually play his dog," Zahn tells Romper. "In the next decade, my goal is to play his 'Aunt Hilda' or imaginary friend 'Larry.' Tom is absolutely hysterical in this show."

You and your family can catch The Healing Powers of Dude when it drops on Netflix on Jan. 13, 2020.

How 'This Is Us' discovered the blind actor who plays Kate and Toby's son

From ET online:

Warning: Spoiler alert! Do not proceed if you have not watched September 24 season four premiere of This Is Us.

Meet Blake Stadnik (pictured), the newcomer playing Kate and Toby's grown-up son on This Is Us.

The fourth season of NBC's family drama kicked off on Tuesday with three seemingly disparate storylines introducing several new faces. There was Malik (When They See Us' Asante Blackk), a teenage father that Deja meets at a party in Philadelphia. There was Cassidy (Jennifer Morrison), a war vet at an Alcoholics Anonymous meeting where Nicky throws a chair through the window and gets arrested. And then there was a visually-impaired singer, who finds the love of his life (Auden Thornton), gets married and is expecting a baby.

But it's that last "new" character who has a direct connection to the Pearson family. As revealed in the closing minutes of the season opener, the singer turns out to be none other than Kate and Toby's adult son, Jack (Stadnik), named after Kate's late father. 

Creator Dan Fogelman shared that it was always the plan to have Jack, whose premature birth was explored last season, be blind. The decision wasn't made lightly. 

"We’ve always known for a while now that Kate’s son was going to be born prematurely and blindness retinopathy is a very common thing that would come from that. It wasn't a debate about what type of thing may or may not happen. It was always part of the character and the story that we were planning on telling," Fogelman told a handful of reporters, including ET, on Tuesday. "But certainly, music has always been a big part of this family's story generationally and it continues on down the line." 

So, who is the actor playing grown-up Jack? Stadnik is a theater actor who is legally blind. This Is Us, as Fogelman noted, is Stadnik's first on-screen credit ever. He is also one of the first visually-impaired actors to play a major character on a network television show.

The process in finding Stadnik for the character was laborious and long. Fogelman revealed that the casting department for This Is Us began scouring for the right actor during hiatus between seasons three and four.

"It was an interesting casting process because we wanted to cast a blind actor. We had started our casting process very early, even in our off-season. I was looking for a leading man who was without sight and who could be funny, charming, accessible and sweet," Fogelman told ET, adding that he was "worried" about it. "One of the wonderful things about our casting department was it wasn’t like they only found Blake. There were a bunch of really viable, wonderful casting choices that came through our casting department. Blake, when he came to us, was clearly the guy."

A veteran of musical theater, Stadnik has starred in productions of Newsies, Sweeney Todd, 42nd Street and up until recently, the Colorado-based show, Guys and Dolls.

"He was actually in a local production in Colorado that we had to get him out of in order to shoot the order, but he had never acted on camera before," Fogelman said. "We wanted to find an actor who could be a leading man and [was] very handsome and very funny and looked great with his bare abs on national television, but also be able to stand in the Greek [Theatre] in front of a live audience and actually perform and sing a song. There were a lot of boxes to check."

"Blake’s first day of shooting was literally walking completely naked in the bed and then having a six-hour makeout scene with a young woman opposite him and going up to the stage at the Greek in front of thousands of people during an intermission of a concert to perform," he marveled. "It was quite a trial by fire for him and he just blew us away in every possible way."

While This Is Us has already fast-forwarded to the future with a salt-and-peppered Randall and a bed-ridden Rebecca, the introduction of an adult Jack in season four moves the timeline several years after that moment. Fogelman confirmed that Kate and Toby's son would be about 12 years old, or "in his teens or pre-teens," in that period with Rebecca and the "her" mystery. "What you're seeing is about 10 years-plus after that," he revealed.

"When we talk about the endgame of that storyline that's already been established with 'her,' it's kind of where this story for our Pearson family -- the immediate family of the Big 3 -- and the family heads toward," Fogelman said, "but it doesn't mean it's the endgame in terms of timelines."

Though Fogelman remained coy about the next time we'll see Jack as an adult again, he teased that the character "will be returned to" this season.

"We're in love with the actor that we found. It's a difficult period to go to all the time because we're pretty deep into the future and it presents production challenges. We do plan on returning to it," he reaffirmed. "Right now, we're telling stories in the beginning half of the season that focus a little bit more on the present-day stories. But it is a place we're heading towards again multiple times, especially because we had a young man who was acting on camera for the first time in his entire life. Sometimes the parts get even bigger than you were planning on making them."

As for the new characters setting up the rest of the season, Fogelman promised that they are all people "who are going to have massive impacts on our main family's lives."

"They are massive parts of the season. They’re not just in a one-off episode as the person who was in the room when Nicky threw a chair in the window. Or to meet Deja at a party. It’s going to go far beyond that. It’s a slow build," he told ET. "Part of the intent here was to establish these characters so that you met them pure and outside of the purview of the Pearson family. Now you really are inside of these characters’ stories and now we slowly start building them into their world and see how they affect and really change their lives."

This Is Us airs Tuesdays at 9 p.m. ET/PT on NBC.

Can Zack Gottsagen, an actor with Down syndrome, change Hollywood?

From the South Florida Sun Sentinel (From left in picture: Dakota Johnson, Zack Gottsagen and Shia LaBeouf)

Boynton Beach actor Zack Gottsagen faces life with a contagious optimism, an undaunted confidence in himself, and in others, that inspires people to accomplish things they may think impossible, even while they are doing it.

It is all the more remarkable for someone who has spent much of his life hearing the word “no.”

He would never talk or walk, doctors said. He would not be in the school play, his high school said. A feature film starring someone with Down syndrome would never get financing, said two young filmmakers who then spent five years making sure it got finished, living in a tent for much of that time.

Audiences across the country soon will be introduced to Gottsagen in “The Peanut Butter Falcon,” a bittersweet buddy comedy whose release in more than 500 theaters on Aug. 23 is as improbable as the standing ovations that film-festival audiences have given its star, an unknown 34-year-old actor with Down syndrome who willed the story, from a script no one in Hollywood wanted to read, onto the screen.

Veteran film actor Shia LaBeouf, Gottsagen’s co-star in “The Peanut Butter Falcon” — along with Dakota Johnson and Oscar nominees Bruce Dern and Thomas Haden Church — calls the Zack effect “magical.”

And no one fell under Gottsagen’s spell with more intensity than LaBeouf, the mercurial Hollywood antihero who was arrested and jailed during filming near Savannah, Ga., in 2017 after a booze-fueled breakdown that threatened to pull the plug on the project.

It was a moment of reckoning for the film and for LaBeouf, who has acknowledged that a face-to-face, tough-love conversation with Gottsagen got him sober and changed his life.

“There’s something about Zack that feels altruistic and, dare I say, omnipotent. He can look through you in a way that feels really beautiful,” says Tyler Nilson, who co-directed “The Peanut Butter Falcon” with Michael Schwartz. “I made a promise to him. I made a promise to him that we were going to do this film and I was going to deliver on my promise, hell or high water, living in a tent or whatever.”

‘Like a brother to me’

In “The Peanut Butter Falcon,” rated PG-13, Gottsagen is Zak, a young man with no family who has been consigned to a rural North Carolina nursing home, looked after by a caring staffer, Eleanor, played by Dakota Johnson (“Fifty Shades of Grey”). One night Zak escapes, intent on finding the wrestling school in Georgia run by his favorite ring villain (Thomas Haden Church) and realizing his dream of wrestling stardom as a character he will call the Peanut Butter Falcon.

This opening escape scene, with Gottsagen tumbling from a window in his underwear, seems determined to reassure the audience from the get-go that, yes, it’s OK to laugh at an actor with Down syndrome. Because he’s an actor, who is trying to make you laugh.

Nearby, an Outer Banks shrimp boat captain, Tyler (LaBeouf), barely scraping by and battling depression over the death of his older brother and dark impulses that lead to petty crimes, makes enemies of the wrong people. He is fleeing in a stolen boat when he crosses paths with Zak. Improbably, the hard-hearted Tyler develops a soft spot for Zak and agrees to let him tag along on his way to a new life as a fisherman in Florida. Perhaps, he says, he’ll even help Zak find his wrestling school.

With Eleanor and Tyler’s enemies in parallel pursuit, the two march through cornfields, wander along country roads and train tracks, and drift down the coast on a makeshift raft, meeting blind backwoods preachers, moonshiners, truckers and brawlers in a journey that invites comparisons to Mark Twain and the dark comedy of the Coen Brothers.

Scheduled for initial screenings in New York, Los Angeles and other select cities on Friday, Aug. 9, the film also features veteran actors John Hawkes and Jon Bernthal, rapper Yelawolf and wrestling legends Jake “The Snake” Roberts and Mick Foley.

Critical to the success of “The Peanut Butter Falcon” is the relationship between its protagonists. Tyler’s brutal candor is balanced with an evolving warmth and protective patience, while Zak opens his troubled friend’s eyes to a simple code of life defined by honesty and fidelity. This mirrored the close bond the two actors nurtured off screen.

“Since we did this, Shia has been like a brother to me,” Gottsagen says during a conversation in his Boynton Beach apartment, surrounded by pictures and memories from the shoot, including a clapper board autographed by the cast and a copy of Down Syndrome World magazine, with Gottsagen, LaBeouf and Johnson on the cover. 

As the film has forced audiences to rethink what it takes to be a movie star and how to respond to a comic actor with a disability, “The Peanut Butter Falcon” has enchanted viewers across the country, winning audience awards at the South by Southwest Film Festival in Austin and the Nantucket Film Festival. Gottsagen and his family have been at many of the screenings.

“Every showing he’s been at, he’s gotten a standing ovation. Even places where they say nobody gets a standing ovation, like Nantucket, he does. It’s just incredible,” says his mother, Shelley Gottsagen. “It’s very emotional. People want to stay and talk afterward, sometimes for an hour, two hours. They pour their hearts out. It touches them so deeply.”

Heroes and villains

Filmmakers Nilson and Schwartz met Zack Gottsagen several years ago as volunteers at Zeno Mountain Farm in Los Angeles, a camp where performers with and without disabilities meet every year to write, produce and star in original short films.

Zeno Mountain Farm was profiled in a critically praised 2014 documentary, “Becoming Bulletproof,” that followed filmmakers and cast as they shot a western (“Bulletproof”), with Gottsagen as the villain.

Nilson and Schwartz were shooting ideas for short films and commercials at Zeno Mountain Farm, both teaching and learning, when they first noticed Gottsagen.

“We saw Zack give a performance in a short film that was really, really fantastic. He was making decisions as an actor that were really informed and present, adding meat to a character. It was something that I had personally not seen from an actor in my entire life,” Nilson says by phone from Washington, D.C., where “The Peanut Butter Falcon” had a recent screening.

A friendship formed over films and filmmaking, with Gottsagen telling them he had studied acting at Alexander W. Dreyfoos School of the Arts in West Palm Beach (he graduated in 2004), taught acting and dance at the local Jewish community center, and worked as an usher at Alco Boynton Cinema.

When Gottsagen told them he hoped to be a movie star one day, Nilson and Schwartz tried to let him down easy.

“It was one of those moments for Mike and I where we were, like, ‘I love you, Zack, but I don’t know if the opportunity is going to arrive for a feature film starring somebody with Down syndrome,’” Nilson says. “And Zack, very sweetly and lovingly, was, like, ‘What if we did it together?’ We thought about it for, like, two seconds, and said, ‘You’re right. Let’s do it together.’”

They started with a blank slate and an empty checkbook, Nilson and Schwartz working odd jobs and living in a tent in Los Angeles. They wrote a script and set the film in the Outer Banks because Nilson had lived there and knew people who would lend them boats and property on which to shoot. Gottsagen enjoys pro wrestling, so that became part of the story. Nilson would play the Shia LaBeouf character.

At that point the scant resumé that Nilson and Schwartz brought to the project included credits for writing, directing or producing a half-dozen videos and short documentaries with such titles as “Alex Honnold: At Home Off the Wall,” “The Moped Diaries” and “Taking My Parents to Burning Man.” Nilson once had a bit part in the 2007 Judd Apatow-John C. Reilly comedy “Walk Hard: The Dewey Cox Story,” and he also had worked as a hand model in a variety of commercials for cell phones, soft drinks and beer.

“I was living in a tent in Los Angeles, but I had made a promise to Zack and Mike that we were going to do this,” Nilson says. “But we were nobodies, with no agents, no manager, no famous friends and a guy that has Down syndrome. We went to the library and checked out books, you know, ‘How to Make a Movie.’ " [Laughs]

They sent the script to industry people they thought might be receptive. No one would read it. After a year of seeing the script ignored, the three shot a five-minute trailer (a “proof of concept” in industry jargon) that gave the viewer a feel for the film’s atmosphere and tone, but also "showed that Zack had the chops to do the acting,” Schwartz says.

They distributed the trailer in cold-call emails and by any means necessary (“I don’t even want to tell you what kind of tricks we used,” Schwartz says) and it found its way to producers Albert Berger and Ron Yerxa, who had helped make a 2013 movie called “Charlie Countrymen,” which starred LaBeouf.

“That’s when things started happening,” Schwartz says. “Shia LaBeouf FaceTimed us on his phone and said, ‘I saw the proof of concept, I’ve read 30 pages of the script, and I’m doing it. Will you please let me do it?’”

No fear

Ask Gottsagen if he was intimidated by his celebrity co-stars and his reply is matter-of-fact: “Actually, no. I felt good for that.” Perhaps because he understands he is a good actor, with nuanced comedic skills. “Yes, I am,” he says, looking you in the eye.

Gottsagen says he taught himself how to act by watching favorite movies, including “Grease,” “Hairspray” and “The Greatest Showman.” Also a singer and dancer, he’s performed for years with the SpotLighters, a Palm Beach County program sponsored by Arts4All Florida, and Southern Dance Theatre in Boynton Beach.

Nilson and Schwartz say Gottsagen’s professionalism and improvisational skills were noticed by his more seasoned castmates.

“If you were doing a scene with him, you had better be ready. Zack brought it,” Nilson says.

Shelley Gottsagen and her wife, Navy and Air Force veteran Trish Carland, have nothing but good things to say about LaBeouf.

“He said to me, when we first met him, ‘How do you feel about having your son hanging around with me? You must be not so happy about this.’ And I said, ‘I don’t know you. Let me get to know you,’” Shelley Gottsagen says.

“Shia has the biggest heart. He’s so kind,” she says. “When they walked onto the set, when they first started to film, Shia’s name was up there, top billing, on the call sheet. And Shia said, ‘Take that down. Zack has top billing.’ Actors don’t do that.”

During filming in the summer of 2017, LaBeouf was arrested in downtown Savannah and charged with obstruction, disorderly conduct and public drunkenness. The incident was amplified when TMZ shared police body-cam footage of the actor’s profanity-laced tirade against the arresting officers.

When LaBeouf arrived at a cast party a couple of days later, Gottsagen immediately confronted him. They sat cross-legged on the floor, facing each other, and had an emotional conversation, according to Shelley Gottsagen and Carland.

“His actual words were, ‘Don’t blow it for me. This is my one chance,’” Shelley Gottsagen says. “They talked it out for over an hour. … They are at one point crying together, at one point laughing and hugging each other. Shia gave him a commitment.” 

Gottsagen is more circumspect about what he and LaBeouf shared. “I was really mad about what he did. I just don’t like to see Shia like this,” he says. “Shia knows everything about what is going on with him. Shia knows about my words, about what I said. And that’s why Shia was trying to fix himself for the better. What he was before, instead of the old Shia, who did what is wrong.”

In a 2018 profile in Esquire magazine, LaBeouf said the episode had a profound effect on him.

“To hear him say that he was disappointed in me probably changed the course of my life,” LaBeouf said. “Zack can’t not shoot straight, and bless him for it, ’cause in that moment, I needed a straight shooter who I couldn’t argue with.

“I don’t believe in God... But did I see God? Did I hear God? Through Zack, yeah. He met me with love, and at the time, love was truth, and he didn’t pull punches. And I’m grateful, not even on some cheeseball s--- trying to sell a movie. In real life. That mother------ is magical.”

Lesson in inclusion

Confronting movie stars is not the only example of Gottsagen’s courage. He did all his own stunts in “The Peanut Butter Falcon,” telling the filmmakers that using a body double, which the Screen Actors Guild had provided, would compromise the movie’s authenticity.

This includes an intense scene in which Tyler pulls a floundering Zak (the character can’t swim) across a river as a shrimp boat bears down on him.

“Did you see there were sharks in the water? Which they didn’t tell me until last week!” Shelley Gottsagen says, with a nervous laugh.

Zack Gottsagen has lived on his own for 12 years and you don’t have to look far for the source of his self-determination.

“Shelley was a huge proponent of independence,” Carland says.

Shortly after Gottsagen was born, doctors at a Brooklyn hospital diagnosed his Down syndrome and told his mother he would never walk or talk, he would be a “total vegetable” and was better off in an institution.

“I thanked them and told them I’m a vegetarian, and I’ll take my vegetable to go,” Shelley Gottsagen says.

She continued to be an aggressive advocate for her son’s independence and his talents, especially when they did not seem apparent to others. She had to intervene when Dreyfoos School of the Arts was reluctant to admit him, she says, acknowledging that his subsequent experience with the theater department was frustrating. “They wouldn’t really give him roles,” she says.

Zack Gottsagen was the first student with Down syndrome to be fully included in mainstream classes in the Palm Beach County School District, according to his mother. She says his success is a lesson in the benefits of inclusion.

“This is what happens when kids are not segregated, when they are allowed to be able to be with everybody and learn from everyone. The best experiences he had in school were the kindness and friendliness of other students without disabilities,” she says. “They say kids are cruel. They’re not. Kids don’t discriminate.”