WEST PALM BEACH, Fla. — In the movie The Peanut Butter Falcon, a young man with Down syndrome lies on a beach, stares up at the stars and questions whether he can really be a hero in pro wrestling — or anything in life. He’s more likely the bad guy, he tells his newfound friend.

“I can’t be a hero because I am Down syndrome.” Coaches, teachers, they called him retarded, he says. Retards can’t be heroes, at least that’s the message he’s gotten all his life.

That’s on-screen Zak.

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Becoming on-screen Zak was its own journey for the 34-year-old actor from Boynton Beach who plays him, real-life Zack Gottsagen.

Where on-screen Zak encountered barred windows, real-life Zack faced down an entire education system.

Palm Beach County school leaders aimed to bar 7-year-old Zack from a regular classroom, later they refused to teach him to read, and years down the line, they attempted to block his path to their elite school of the arts.

Zack barreled through their roadblocks and countless others to become the star of a recent feature film and a real-life hero, particularly to his co-star, Shia LeBeouf. Zack became the one friend who could speak truths to the sometimes troubled star and be heard. The man who LeBeouf called the alpha male of their Savannah, Ga., movie set.

Zack and Shia weren’t the only winners. In fact, the winners in Palm Beach County alone number in the tens of thousands — tens of thousands of children with disabilities, who like Zack yearn for one thing: to be included, to be the stars of their own story.

Institutionalize him

Before Zack could advocate for himself, the job fell to his mom. More accurately, Shelley Gottsagen took the mission by the throat.

“When he was diagnosed, they told me he’d never walk or talk. He’d be a vegetable. They had a room in an institution. I really should not take him home with me, they said. I was so overwhelmed,” Gottsagen recalled.

But the 30-year-old single mom with a lifetime of ’60s-honed activism in her back pocket wasn’t taking their advice.

“A vegetable? That’s OK, I’m a vegetarian. I’ll take my vegetable to go,” Gottsagen said.

Like most parents, Gottsagen became her son’s first teacher, immersing herself in the study of Zack and challenges of Down syndrome.

But a formal classroom loomed on the horizon. And, for better or worse, Zack’s education was poised to become the county’s front-line case for the rights of children with disabilities to go to school with everyone else, a practice referred to as “inclusion.”

A federal law dating to the 1970s promised students with disabilities an education in the least-restrictive environment possible. As Zack turned school age in the early ’90s, advocates were celebrating another weapon in their arsenal: the Americans With Disabilities Act, which forbids discrimination.

Still, in Palm Beach County, no child with Down syndrome had ever spent his or her school career from first grade through 12th seated for most of the day in classrooms beside children who did not have disabilities.

That was about to change.

‘I do not belong here’

By the fall of 1992, Zack was headed for first grade and school No. 5. District officials directed Gottsagen to enroll her son in The Royal Palm School, a campus exclusively for students with disabilities.

He’d been segregated before in a Lantana Elementary kindergarten class for students with speech and language disabilities, but a visit to Royal Palm School left Zack in tears, Shelley said.

“I do not belong here,” he told her.

“He was incredibly intuitive and insightful,” Shelley said. “I had to feel my gut and what he was saying and believe him.”

Instead of Royal Palm, Shelley drove Zack to his neighborhood school, Palm Springs Elementary. There he walked into a first grade class with 36 other students, one teacher and no one who had experience including a child like Zack.

By some measures, Zack was a typical first-grader.

At home, he liked to play with the neighborhood kids and ride his bike, training wheels on. He was into Disney movies and TV. Pizza and french fries. He was funny and loving, but could also be petulant and sulky.

He learned to swim before walking — necessary in order to build the muscle tone Down syndrome had robbed him of. The disorder showed up in other ways, too.

A Palm Beach Post story chronicling that first-grade year, when Zack still went by Zachary, put it this way:

Zachary, like other Down syndrome children, has trouble with things such as tying shoes, holding a pencil and buttoning, because of poor muscle development in his hands. He is so small they had to saw inches off the legs of his desk and chair at school. He wears glasses to read and to see things that are close; six operations have improved, but not cured, his hearing problems. Otherwise, he is remarkably healthy.

His vocabulary is wonderful — his pronunciation uneven. He has gaps in his learning: He might know all the numbers from 1 to 10 on Monday but not on Tuesday. He’ll know them again on Wednesday.

Most people think Zachary’s a mentally handicapped overachiever, doing more academically and socially than their tests predict.

Parents of other kids irate

In the beginning, Zack’s presence unleashed chaos in teacher Bonnie Taylor’s room.

He’d run out of class or disrupt whatever lesson the teacher was giving. If he couldn’t be first in line, he’d have a tantrum. He often wet himself when he went to the bathroom, so Shelley sent a fresh change of clothes with him in his backpack, The Palm Beach Post reported.

“I wasn’t prepared,” Taylor told The Palm Beach Post that year. “I was not familiar with Down syndrome. I didn’t know what behavior I should expect and not expect.”

Parents of the other kids were livid, not so much at Zack, but at his mom for forcing the matter.

One mom said she resented the power Shelley wielded that kept the boy in the class. Another suggested Zack wasn’t getting his needs met and, with him in the classroom, the other kids weren’t getting what they needed either. A dad chimed in, “I would like to think the lady’s doing the best she can for her child. But I think she’s got a political stance.”

Even Zack could recognize certain issues, and, in what would prove to be an enduring knack for problem-solving in his life, Zack also had an inkling of how to fix it.

Shelley recalls picking him up from school that first day and asking him how the day went.

“Not good.” He’d been punched in the belly by a classmate in after school. Zack alerted the teacher and she put the puncher in time out, he told his mom.

Shelley figured that was a victory. But Zack knew better.

“She didn’t make him apologize,” he said. “If he doesn’t apologize, how am I going to be respected? Can you help me talk to the teacher?” Shelley did. The kid apologized. Then the boys became friends, Shelley said.

(Zack proved equally astute when more than two decades later two filmmaker friends told him his potential to become the star of a movie star was bleak. No one is making movies with Down syndrome leads. You can guess what he told them.)

This first-grade victory, however, was fleeting.

The school district filed a lawsuit against Shelley attempting to force Zack out of his first-grade classroom and into a program for kids with disabilities. Shelley fired back with complaints to the federal Office for Civil Rights and the Florida Department of Education, claiming the district was denying Zack’s right to the least-restrictive education.

The district’s suit prevented Palm Springs Elementary from seeking a middle ground such as hiring an aide or adapting the curriculum to better suit Zack, The Palm Beach Post reported.

Five weeks in, the school suspended Zack because of his behavior. Shelley pushed back. The law forbids expelling a child with a disability for behavior that is rooted in his or her disability. The district relented; the principal apologized.

Schools won’t teach him to read

A reprieve came in second grade, when a teacher volunteered with gusto to take Zack in her class. But every year mother and son met with struggle, and they didn’t always win.

At some point in elementary school officials refused to give Zack the help he needed to learn to read. They said the skill was beyond his abilities.

Shelley sought a hearing. “I had videos of people with Down syndrome reading, but they wouldn’t let me submit them. The district relied on their experts in elementary education and won. Shelley hired a tutor — a teacher from elsewhere in the district.

By fifth-grade, a new school opened west of Lake Worth. Thanks to a visionary principal, Manatee Elementary was the first in the district to open with a model of full inclusion. Zack was a welcome fit.

The principal hand-picked teachers and staff who were comfortable leading a classroom where the Zacks of the county would mingle with their peers and be held to high standards. The research backed this approach, showing that when done right, not only do kids with disabilities do better, aim higher, learn to navigate the real world, but also the students without disabilities benefit socially and are not dinged academically.

Shelley sold her home and moved into Manatee’s boundaries. She was tired of fighting.

More than one future Palm Beach County principal passed through Manatee’s halls early on, including Keith Oswald who was destined to become the district’s chief academic officer and now deputy superintendent. That experience and Zack’s example would help peel away biases for years to come, Oswald said.

But those changes took time, leaving the Gottsagens to continue slogging through the trenches and gathering allies.

Among them, Sandra Richmond, a school board member at the time and the mom of Tony, another boy with Down syndrome and just a bit older than Zack.

It was Richmond who kept Shelley in the fray when early on she was ready to give up at Palm Springs — “What message are you giving to the other children in the school and to Zachary if you don’t bring him back? What are they going to learn from this? Are they going to learn that children who are different can be excluded? They can just dump them off? He’s going to learn that he doesn’t belong?”

A new kind of audition at Dreyfoos

Richmond was also in the wings when Zack set his sights on the revered Dreyfoos School of the Arts.

Since he was 3, Zack has told anyone who would listen that he wanted to act. When it came time to choose a middle school, an assistant principal nudged him in the direction of the district’s Middle School of the Arts (later renamed Bak). A performance of Shel Silverstein’s poem “Sister for Sale” sealed the deal.

But Dreyfoos was the next level. The high school handed students auditioning for its theater program a script and asked them to perform it cold.

Shelley sought accommodations for Zack, who was still reading closer to a first-grade level. Perhaps they could explain the scene to Zack, allowing him to then act through improvisation. (Twenty years down the road, LeBeouf would credit Zack’s improv skills for heightening his own performance, “He forces you to listen in a different way. I’ve never had a more intimate relationship with another actor… he is my whole performance. I’m stealing his looks and falling into his eyes.”)

But back in 2000, Dreyfoos officials weren’t having it. They refused.

Shelley filed a complaint with the OCR.

In an attempt to appease her, Dreyfoos created a program for students with disabilities and offered a seat to Zack, Shelley recalled. But those teens, Zack and Sandy’s son Tony among them, were segregated from the rest, kept out of the traditional classes. Zack wanted more. He wanted to interact with the other students, take the same performing arts classes. He wanted to audition.

Nearly a year later, Shelley was vindicated. Federal investigators found fault with the school’s audition process for students with disabilities.

The district was forced to re-audition Zack and another student and make accommodations for students according to their disabilities in the future.

In legal terms, it was a win. Zack was included.

Teachers like Debbie Drolet, at that time going by Stranahan, made the school a welcoming place.

“He was always the star. Persistent. Charismatic. He always wanted to dance and act,” said Drolet, who was the school’s special education language teacher. “He told me he was going to make it.” And she believed him.

The public wasn’t wholly swayed.

Letters to the editor poured in to The Palm Beach Post. “I believe we are carrying the American with Disabilities Act too far. Unfortunately, there is no way Zachary Gottsagen will ever be able to perform as a normal child does. It is very difficult for any parent to accept. He should not be allowed to enter Dreyfoos,” wrote one West Palm Beach resident.

“Shelley Gottsagen insists that her son and others be integrated. She does not sit in the classroom and watch these students suffer, however, because the class must keep its pace while the disabled students gain nothing because they cannot be educated properly in such a situation,” wrote a reader from Jupiter.

Teacher who wouldn’t let him on stage

Zack didn’t find complete acceptance within the school’s halls either.

Even as fans lined up to have Zack sign movie posters in a Lake Worth theater in August, he gave Drolet a smothering hug and then declared his resentment for another teacher.

For Zack, time has not taken the edge off the sting he feels for the teacher he remembers most for her refusal to give him a shot on her stage.

Without dropping her name, the woman is the source of the same frustration he shared earlier this summer from a stage in Los Angeles after The Peanut Butter Falcon was screened for the American Academy of Motion Pictures.

“I have been working so hard for all of my life just to be in this big movie. I’m not going to back down. I’m not going to give up, to keep trying… to prove. Those teachers will understand how those children can become a regular actor. That’s how I became The Peanut Butter Falcon.”

One of the Falcon’s writer/directors, Mike Schwartz, put it more succinctly in a phone chat weeks later. “Zack is aware when people don’t believe in him. He’s aware why. And he’s pissed off about it.”

His anger at that teacher fueled on-screen Zak’s emotional recollection of being ridiculed by teachers.

There are lots of Zacks.

When he stepped foot in Bonnie Taylor’s first grade room, the district of more than 120,000 students counted Zack among 16 children with disabilities who were included in mainstream classrooms most of the day — the only with Down syndrome.

That same year, Shelley went to battle on the ball field as well. She called the Justice Department and the American Civil Liberties Union when the Palm Springs Little League board voted to bar Zack from T-ball because he had Down syndrome. Three months later, the board reconsidered, though not unanimously, to put Zack back on the roster. They apologized.

Next comes a friend with autism

When Zack’s story appeared in the pages of The Post, it caught the eye of the mother of a boy with autism named Matthew. She picked up a pen and wrote Shelley. Could they have lunch? Could Shelley help her with the same kind of fight?

Shelley didn’t hesitate. Helping other parents face down teachers, principals, the system would become a decades-long calling.

Matthew became the first student with autism to be fully included in district classrooms, according to his mom.

Matthew and Zack became friends. Matthew inspired Zack to get his first job at a movie theater. Matthew’s mom, Karen Brill, became an advocate for children with disabilities and, for the past nine years, a school board member.

By 2004, the year Zack graduated from high school, the board had appointed a task force on inclusion and directed staff to come up with a plan to put an end to the segregation for students with disabilities, who account for roughly 15 percent of the county’s students, by 2008.

When the task force was formed, fewer than half of those students were included in regular classrooms. In 2018, the number of students with disabilities had grown to roughly 30,000 of more than 195,000. The district’s inclusion rate was up to 74 percent, a rate higher than Florida’s other large urban districts but one percentage point short of the state average.

Inclusion in schools has become mainstream, so to speak.

Real life can still be a challenge.

Zack grew up. He should be wearing glasses and using hearing aids, but he’s not having it, Shelley said. At 34, he now reads on a ninth-grade level. He stutters noticeably in conversation — but not when acting off a script or ad libbing lines or singing or rapping.

He has his own apartment. He doesn’t drive.

Years ago, he got a job at a movie theater and kept it until the place abruptly closed this summer. His friend Matthew Brill may have a lead on another, but really, Zack’s been too busy to consider it.

He’s been bouncing around the country, making repeated stops in L.A. but also Phoenix and Nantucket and Bloomington. Shelley, now 64, retired just in time to travel with him. In September he got an agent and began talking to casting directors.

A leading role in a feature length film didn’t just land in his lap.

From that first-grade belly punch, Zack was learning to navigate in a world that didn’t always get him. Inclusion, Shelley argues, made him better at it.

“He was an advocate and better than I am,” said Shelley, who in district halls became known as “That Gottsagen woman.” Her and Brill together? “The moms from hell,” says Brill.

But Zack? “He’s much more diplomatic,” Shelley said.

What to do with a wheelchair

When Zack earned a spot in the school’s safety patrol but was then told he couldn’t go on the patrol’s epic annual train trip to Washington, D.C. Shelley protested. Then they said he could go, but only with his mom as his companion.

She raised a ruckus again and called OCR for a quick ruling. “They ruled if he qualified (to go), he had to go,” she said.

On the morning of the trip, the grown-ups greeted Zack with a wheelchair — a device he’d never needed or used. Shelley was beside herself.

“I’m ready to have a fit about it,” she said. But Zack wasn’t.

He declared the chair a luggage trolley and invited his friends to load up. Everywhere they went in D.C., Zack’s wheelchair carried what his fellow patrol kids would rather not.

“He thinks out of the box. He doesn’t get angry — well, he does sometimes — but he’s a good problem solver,” Shelley said.

By middle school he was commandeering the annual meeting with the principal, teachers and his mom that mapped the accommodations he’d get in class. As any parent will attest, an individualized education program meeting is often fraught with tension.

“I remember being in an IEP meeting in middle school, the principal and a teacher were yacking through it. Zack stood up, crossed his arms silently. When people noticed, he said, ‘That’s OK, when the principal finishes her private conversation, we’ll continue.'” Shelley said.

When Zack left high school, he was invited to enroll in a program at then-Palm Beach Community College for students with disabilities who weren’t intellectually up to earning a degree but who could benefit from the college experience.

He called a meeting several months into the inaugural year. Shelley was invited but didn’t know what was coming. Zack, it turned out, was going to give it to them straight. He liked the classes he was taking, but why couldn’t he earn the credit rather than just audit them? And he was given an on-campus job, but unlike other jobs he’d had before, this one didn’t pay. Why would he do a job that didn’t pay?

“Can you tell me the difference between this program and slave labor?” Zack asked as Shelley’s jaw dropped in surprise. “He said, ‘I also studied fascism and this looks a lot like fascism.’ He was right.”

Before then, he’d worked for seven years at Publix. He worked at a child-care center for a couple of years, too, but wasn’t able to pass the state exam to make it a career.

‘My heart is like yours’

All the while, he acted.

Shelley recalls Zack landing the lead role in a play at the Royal Palm Playhouse. The director hadn’t worked with an actor with a disability before, but the role was a character with a disability and Zack owned the audition.

At the end of the first performance, the curtain went up and the audience was invited to ask questions. By Shelley’s account, a kid asked Zack, “What does it feel like to have Down syndrome? Zack answered, ‘I feel everything you feel. My heart is like yours. I learn things. But we share the same heart.'”

“After hearing that, the director had Zack talk about that to every audience. It opened him up to working with actors with disabilities afterwards,” Shelley said.

Zack’s lucky break, if you could actually call it luck, was meeting Mike Schwartz and Tyler Nilson, now 40- and 38-years-old, respectively.

They met at an acting camp for people with and without disabilities where Schwartz and Nilson, close friends who had showbiz jobs, were volunteering. The trio had been buddies for a couple of years. Schwartz was an editor working on commercials. Nilson worked as a hand model who had doubled for big names including Brad Pitt and David Beckham. Zack had already acted in a handful of short movies.

“Zack is one of the most confident people I’ve ever met and when you’re confident, you can create a lot of opportunities,” Schwartz said. “At dinner one night, we were having a conversation about how he was ready for a feature film. He said ‘I want to get into features. I want to be a movie star, and we had a real conversation that there’s not a lot of roles written for people with Down syndrome. It was a grounded conversation.”

He looked at them and said: “You guys write and direct movies. Write one for me.” Scwhartz recalled looking at Nilson and saying, “OK.”

They compared their process to an episode of the cooking show “Chopped.” They were handed very specific ingredients and within their limitations turned it into a buddy travel story that swiftly won hearts on the Indie circuit.

They customized the character, feeding off Zack’s speech patterns, his swimming skills, his love of pro wrestling.

But they, too, had to battle for Zack to be included when Hollywood executives took an interest in the script, but not the actor. They offered up millions but wanted to cast an A-lister to play the lead. The pair stood by their casting, despite being down on their fortunes.

“Tyler built a tent in the woods. I was sleeping in the car,” Schwartz said.

But anyone other than Zack wasn’t going to work.

“We made a promise to Zack. We take our commitment seriously,” he said.

Eventually, Zack’s potential was embraced, when the pair shopped around what they call a “proof of concept,” mapping camera angles and locations in 10-second scene snippets.

“Most importantly you could see that Zack could carry a movie. When Zack acted with Tyler, you could see that Zack could carry it,” Schwartz said. “Getting any movie made is a miracle. It really is. Tyler and I are really nobodies. We’d really never made a movie before.”

They landed not only Shia LeBeouf, but Dakota Johnson and Bruce Dern — all three of whom worked for basement union wages. Zack did his own stunts and gathered the crew at day’s end. He set the tone.

“We just thought Zack was a great actor and we wanted to tell his story. We’ve been surprised by the ripple effect — the resonance we’re having with people who have Down syndrome,” Schwartz said.

“We had the mother of a young man with Down syndrome come up to us with tears in her eyes after seeing the movie. ‘You don’t understand how important this is for my son,’ she said. ‘He just graduated. He can’t get a job. The more people see this — my son might get a job if people see this movie.'”

Once again, including Zack is changing the lives of others like him.

“He’s free of self-doubt, and I think that’s what I try to learn,” Schwartz said. “When everyone is free of self-doubt, doors seem to open.”

Recently, Justin Timberlake saw the movie and emailed LeBeouf to say it was “really beautiful,” according to Schwartz. Zack’s reaction: “Me and Justin should make a dance video. Not a joke. He was just saying, ‘Why not?'”

Why not?

Advice from Zack’s mom; an epilogue

Just because Zack Gottsagen knocked down barriers for students with Down syndrome like himself in the Palm Beach County schools, doesn’t mean the path is always smooth for children with disabilities or their parents.

After Zack graduated, his mom Shelley Gottsagen continued to fight for other children, advising parents how to advocate for the best classroom experience.

That advocacy can happen in the principal’s office, or a teacher meeting. But most often the big work gets done in annually scheduled meetings where teachers and administrators hash out accommodations to help students succeed despite their disability. The tweaks come packaged in what is called an individual education program, or IEP.

Gottsagen has this advice:

Understand the laws and your child’s rights.

Don’t be intimidated by authority, and don’t be lulled into thinking the people in the room are your friends. “You may like them. The ideal is you work together as a team to teach your child. But often they’re looking at how much does this cost.”

Write down what you want for your child and keep it in front of you.

Don’t talk only about academics, but also clubs, extracurricular opportunities because that’s often what keeps children interested in school.

Bring someone with you even if it’s just your neighbor. “You need support and someone on your side. They (school staff) outnumber you.”

Keep a list of phone numbers handy. Gottsagen said she stopped one meeting to call the state’s head of special education to clarify for those in the room that weekly speech therapy written into the IEP, meant the therapist must meet with Zack weekly. The same number of hours every couple of weeks didn’t count.

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