The Peanut Butter Falcon — Actor Zack Gottsagen & Advocate Shelley Gottsagen - ABILITY Magazine (2024)

An actor with disabilities is born to a disability rights activist. It seems like a far-fetched Hollywood script, but, in reality, it’s 100% true. Meet the Gottsagen—Zack whose breakout role in Peanut Butter Falcon has put him on the map and his mother, Shelley, whose activism for disability rights predates her son. ABILITY Magazine was able to chat with Zack and Shelley in between events in an increasingly busy schedule.

Zack is the lead actor inPeanut Butter Falcon, along with Dakota Johnson and Shia LaBeoufa. The role was written specifically for him. In it, he plays Zak, a young man who lives in a nursing home because his family isn’t in the picture, and the state has determined he can’t live on his own. In his quest to meet his hero, an all-star wrestler, he escapes and takes off into the night. Zack is a man with Down syndrome. The film is authentic to things in his life experience, something we don’t see in media often enough. Throughout the conversation, we learned about Zack, but we also learned about his activist mom. Shelley said when doctors told her to leave Zack at an institution because he’d be a vegetable, she told them, “It’s a good thing I’m a vegetarian. I’ll take my vegetable to go.”

Shelly Rohe: Hi, Zack!

Zack Gottsagen: Hi.

Rohe: I saw the movie, Peanut Butter Falcon. It was great.

Zack Gottsagen: Thank you.

Rohe: I hear that you have been an actor for a long time. Can you tell me a little bit about that?

Zack Gottsagen: Yeah. For me, I was in school before I was in movies. I went to a Palm Beach High School. Dreyfoos School for Arts and, of course, Middle School of the Arts.

Shelley Gottsagen: We had to rely on the Office of Civil Rights because Dreyfoos refused to take any students with disabilities. So, we had to get the Office of Civil Rights to let them know that if they didn’t comply, that their school was being shut down.

Rohe: Wow.

Shelley Gottsagen: Zack was the first student with Down syndrome to be fully included in the Palm Beach County school district. We spent most of his childhood in court. (laughs)

Rohe: That’s so frustrating. Look at what it got you! Now they get to say that they’re proud that your son came through the system, but they won’t mention that they didn’t want him to come through the system.

Shelley Gottsagen: They won’t. They know better. He’s come out very strongly in local newspapers and said that this was despite the school system, not because of it.

Rohe: Really?!

Shelley Gottsagen: And he talks about how he was mistreated. They would not even answer any questions or try to take claim for his success. They know better. (laughs)

Rohe: That’s good.

Shelley Gottsagen: Yeah, they were pretty wicked. There were some good people along the way, but it was a system that had to be fought.

Rohe: And it’s still happening now, but back in the day, it was a national issue. Even with IDEA, they’re still trying to fight it.

Shelley Gottsagen: There’s lots of compliance issues. It’s awful. It’s still awful. I still struggle.

Rohe: Zack, how many movies have you done?

Zack Gottsagen: Eight movies.

Rohe: Eight? Wow! What was different about this one?

Zack Gottsagen: This one was kind of like more of a business.

Rohe: Business?

Zack Gottsagen: Because it was a feature it was more like a business.

Rohe: I see. What were the other ones like?

Shelley Gottsagen: I don’t know if it’s OK if I help out a little?

Rohe: Sure.

Shelley Gottsagen: He did many movies with a group called Mountain Farms. It’s a group that believes in inclusion and high-quality movies. They do short independent films, and they gather a group of people, half of them without disabilities, half of them with varying types of disabilities. And they actually write the movie together and they perform it together. They are independent films. There was one movie that was a behind the scenes, and that movie won multiple awards. Zack was the keynote speaker at the 25th anniversary of the Americans with Disabilities Act at the Smithsonian, and they showed that movie. He was able to talk about that whole process. They followed three of the actors with disabilities into their real lives, and Zack was one of the actors they followed. They came, and he lived in his own apartment. At the time, he was working, so they interviewed his employer and the things that were important in his life. They followed him, and that one was shown all over the world.

Zack Gottsagen: Yeah. I would say it’s kind of more learning.

Rohe: How long was your speech, Zack?

Zack Gottsagen: How long was it?

Shelley Gottsagen: Oh, he talked for about 15 minutes or so. And there were advocates from all over the world attending.

Zack Gottsagen: Yeah.

Rohe: What was the most fun thing you did at the Smithsonian?

Zack Gottsagen: Several fun things.

Shelley Gottsagen: They had a lunch counter where the well-known protests took place for the civil rights movement. They were celebrating all types of civil rights, but particularly the part that Zack was involved in was the civil rights of people with disabilities.

Rohe: And that was the 25th anniversary of the ADA?

Zack Gottsagen: Yes.

Shelley Gottsagen: He was the keynote speaker.

Zack Gottsagen: Yeah.

Rohe: So you were asked to be the keynote, which is really great. Have you done other talks around the country on different anniversaries like the ADA or December 3rd, which is the International Day of Disabilities?

Zack Gottsagen: Yes, I have.

Shelley Gottsagen: Zack is doing a lot of things at the Center for Independent Living. It was more local things, not really national.

Rohe: In Florida?

Shelley Gottsagen: Yeah. He was speaking in Palm Beach County. Zack does a lot of advocacy. He’s met with different legislators on different issues, issues around the enforcement of the ADA and also the lack thereof, of enforcement, is what the issues were.

Rohe: When you were in Washington DC, were you able to meet with legislators like Senator Harkin, who drafted the ADA?

Zack Gottsagen: Yes, I did.

Rohe: You did get to meet with him? I think he was just retiring right around that time, which is great if you met him.

Shelley Gottsagen: Yes. There was a big march. We were able to go to the march, and he was there.

Rohe: Senator Harkin wrote a column for ABILITY Magazine for 14 years.

Shelley Gottsagen: Oh, awesome!

Zack Gottsagen: Yeah, cool.

Rohe: Can you give a background of how you got involved in the Peanut Butter Falcon, how that came about?

Zack Gottsagen: Tyler and Mike, I met at camp, at Zeno’s camp.

Shelley Gottsagen: Through that group, Zeno Mountain Farms, Tyler, who is one of the writers in movie, was an actor in a movie that Zack was in called Bulletproof Jackson, and Mike did some camera work or editing. They got to know Zack over a period of three years and they formed a friendship. Zack told them that he wanted to be the star of a feature movie, and they told him, basically, Hollywood isn’t exactly looking for actors with disabilities. And so he told them, I guess that means you guys need to write and direct, and I’ll have to act in it.

Rohe: (laughs) How long did it take for all of this to come together?

Zack Gottsagen: I’ll say five years.

Rohe: That’s a good amount of time. Did you give them some ideas? Did you have any ideas about the film?

Zack Gottsagen: For the film, yeah.

Rohe: Can you tell me one thing you thought of?

Zack Gottsagen: I’ll say The Peanut Butter Falcon.

Shelley Gottsagen: He came up with the name of the film.

Rohe: Oh, did he? Nice!

Shelley Gottsagen: Some of the dialogue in the film was improv that Zack did, like Rule number one: party. That was not in the script. He did that. (laughter) Also, Zack did all his own stunts in the movie.

Zack Gottsagen: Yes.

Rohe: Wow! You fell out of the window?

Zack Gottsagen: Yup.

Rohe: Wow! What else did you do? Did jump off that big platform?

Zack Gottsagen: Yup.

Rohe: Do you like to swim?

Zack Gottsagen: Yes, I do. That’s high, 40 feet.

Shelley Gottsagen: They had a stunt double for him, but Zack refused to use the stunt double. Zack, you tell them why you did your own stunts.

Zack Gottsagen: Why? Because for me, on this one film, I wanted to show Tyler and Mike I could do it.

Rohe: What was the wrestling scene like? Was it hard to do?

Zack Gottsagen: Um, no.

Rohe: Was it fun?

Zack Gottsagen: Yeah, it was fun.

Rohe: So Zeno Mountain Farms, you had flown up there and done Becoming Bulletproof, you said?

Zack Gottsagen: Yes.

Rohe: How long did it take? Did you film up there?

Zack Gottsagen: LA.

Shelley Gottsagen: Yeah, it was in Venice, California, where they filmed. And they all lived together for a period of time while they wrote and filmed the movie. There were bunk beds and mattresses all over the place, and they all just hung out. Zack would go every year. He would fly out there by himself and hang out with his buds.

Rohe: I thought they were in Vermont?

Shelley Gottsagen: They’re out of Vermont, but the movies they would do they would film in LA, like in Venice.

Rohe: We did an article called The Homecoming, I wonder if you saw that film?

Shelley Gottsagen: We haven’t seen it yet. Zacks in it.

Rohe: Oh, he’s in The Homecoming as well? How funny!

Shelley Gottsagen: Yes.

Rohe: Then you probably know Eileen Grubba. Do you know her?

Zack Gottsagen: Oh, yeah, actually, I do know her, yes. Yes, I was with her.

Rohe: Should we tell her you said, “Hi”?

Zack Gottsagen: Tell her “hi” from me.

Rohe: One of the things that I noticed was the language in the movie. Was there a concern about the way language was going to be presented?

Shelley Gottsagen: Are you talking about the use of the R-word?

Rohe: Yes.

Zack Gottsagen: Yeah.

Shelley Gottsagen: That was a big discussion and a lot of input. It was important that Zack’s role be authentic, and unfortunately, that word has been used for him and many others, and we wanted the horror of that to be in the movie.

Rohe: (sighs) Yeah. Do you know Andrea Friedman. She’s the first actress who was on a network show that has Down syndrome.

Shelley Gottsagen: I’ve seen her.

Rohe: She was on the show Life Goes On. She was the love interest of Corky, if you remember the show.

Shelley Gottsagen: Yeah, right, right, definitely! Corky himself Life Goes On was so important to Zack.

Zack Gottsagen: Right.

Rohe: We have a video with Andrea Friedman about that. It’s very short and very moving, of kids using that word when she was in school.

Shelley Gottsagen: Yeah.

Rohe: Zack, any similar issue with you when you were growing up, that kids were teasing you and using the R-word?

Zack Gottsagen: I don’t know.

Shelley Gottsagen: I remember at the Boys and Girls Club. (laughs) I remember I almost killed somebody over it. (laughs) Yeah. The kid tried to recover real quick and said, Oh, no, no, that’s not what I said. I thought his name was Ricardo. I was like, Yeah, quick thinking, kiddo!

Rohe: That’s a great comeback!

Shelley Gottsagen: I took his shirt collar, I said, “I think you need a staff member to deal with you because you don’t want to deal with my rage over it!” (laughs)

Rohe: When the kids say that to Andrea, she said, “If you don’t stop, I will tell my sister.” And her sister would take care of them. (laughs)

Shelley Gottsagen: (laughs) Yeah, you know it still happens.

Rohe: The other thing we noticed on language in the movie is that you weren’t using ‘people first’ language. Was that also more indicative to being real, being authentic?

Shelley Gottsagen: What they’re saying is that instead of staying ‘I’m a person with Down syndrome,’ you were saying in the movie, ‘I am a Down syndrome person.’ Do you know why?

Zack Gottsagen: That’s how I played it for the movie.

Shelley Gottsagen: The writers were using it the way Zack said it. They gave me an example of when they were all hanging out one night, and Zack kind of disappeared for a while. They didn’t know where he was. I guess he had gone to a bar somewhere. I don’t know where he went. Anyway, when Zack came back, they said, ‘We were worried about you?’ And he said, “Don’t you know? I’m a Down syndrome person. Everybody likes me. I can go anywhere I want and make friends.” (laughs) They were just using the language the way Zack tends to speak.

Rohe: Do you remember? Did you go to a bar, Zack? Where did you go?

Zack Gottsagen: I don’t know.

Rohe: You’re not going to say it in front of your mother. (laughs)

Shelley Gottsagen: (laughs)

Zack Gottsagen: (laughs) I don’t know.

Shelley Gottsagen: Do you remember the night when you and Mike were talking about that, when you disappeared?

Zack Gottsagen: Yeah.

Shelley Gottsagen: I think they said he came home with ice cream. I don’t know where he went. But you know where you went. I can step out of the room if you want to tell them. (laughter) But I’d read it! (laughs)

Zack Gottsagen: Look at the credit card statement.

Rohe: Zack, do you know your way around Venice pretty well, then?

Zack Gottsagen: Yeah.

Rohe: What do you do when you’re in California? Did you go into the ocean?

Zack Gottsagen: Yeah, yes, I did.

Shelley Gottsagen: Zack has a great sense of direction. By the time he was 11 years old, he was navigating a couple of types of transportation, taking buses and trains. He’s really good with figuring things out.

Rohe: Both of your lives have probably changed some since the movie’s been released, I would think. As we noticed, the phone is ringing a lot. Has that been the case? Have things changed because of the success of the movie in your lives?

Zack Gottsagen: Yes.

Shelley Gottsagen: What are some changes in your life since the movie?

Zack Gottsagen: Uh, everything.

Shelley Gottsagen: (laighs) Everything, yes! The same people who didn’t want to listen to you before are now paying to hear his speech! (laughter)

Rohe: That’s good! I know this is a typical question that everybody asks, but can you say some things about working with your two co-actors?

Zack Gottsagen: I would say Shia is a very good person. We have fun and work hard and just do everything that we love to do together. And then Dakota Johnson, she is really good. She too has been fun and she loves working with me, going over the lines and just doing our work putting our show together so people can see our film.

Rohe: Who came up with the secret handshake?

Zack Gottsagen: That was, me and Shia.

Rohe: It’s no longer a secret.

Zack Gottsagen: (laughs) Yup.

Shelly Rohe: How about when you were patting each other’s cheeks? Was that in the script?

Zack Gottsagen: Yeah.

Rohe: Did you learn lines with Shia, too?

Zack Gottsagen: Yeah.

Rohe: Where did you film this?

Zack Gottsagen: We filmed it at Savannah, Georgia.

Rohe: So, you’ve done a lot of traveling?

Zack Gottsagen: Yeah. Yes, I have.

Rohe: (laughs) Will you be traveling more for the promotion of the movie?

Zack Gottsagen: Yup.

Shelley Gottsagen: Where’s the next trip, Zack?

Zack Gottsagen: England.

Rohe: Oh, very nice. Have you been overseas before?

Zack Gottsagen: Nope. I have not.

Rohe: You’ll have a great time. Is this for the movie? Is it a speaking engagement?

Shelley Gottsagen: The London Film Festival.

Rohe: Are you coming out to Los Angeles any time soon?

Zack Gottsagen: I think so, yeah.

Shelly Rohe: Do you know what the event will be?

Zack Gottsagen: I don’t know yet.

Shelley Gottsagen: Well, what we think (laughs), we’re waiting for the final word, but it looks like Zack may be invited to the Academy for the—

Zack Gottsagen: The governor awards.

Shelley Gottsagen: Oh, yeah, that’s right, the governor awards. We’re waiting for definite, but we heard yesterday that it looks like he may have a seat at the table.

Rohe: That would be great! What about Media Access? Are they inviting you out?

Shelley Gottsagen: I’m not sure yet. Right now, he’s got so many invitations all over the country that I’ve turned it over to his manager and his agents. It was more than Zack and I can handle.

Rohe: Sure.

Shelley Gottsagen: It was getting overwhelming. I had to retire from my job in order to try to keep up with everything.

Rohe: That’s good news-bad news, right?

Zack Gottsagen: I’ve been off of work for the past five years.

Shelley Gottsagen: Five weeks.

Zack Gottsagen: I mean five weeks.

Shelley Gottsagen: Zack worked for a theater, and the theater unfortunately closed. He wouldn’t have been able to keep up with his work schedule anyway.

Rohe: Are you part of a speaking bureau now?

Zack Gottsagen: Yeah.

Shelley Gottsagen: We’re just still kind of balancing, he’s going to be the keynote at the National Down Syndrome Society in June. He keeps getting so many invitations. He just spoke to 2,000 people up at the Hearst Castle, and Maria Shriver. That was really cool.

Rohe: That is a great venue.

Shelley Gottsagen: He’s getting a lot of opportunities, and it’s really good. He’s being received well.

Rohe: I’ve heard so many times people talking about the success of the movie, being a pivot point to show the industry that you can be successful. It’s a little bit of history being made.

Shelley Gottsagen: Yeah. I mean, really, what’s been amazing is some of the reactions, like, we were just at the Angels game, and Albert Pujols, the baseball player, he has a 21-year-old daughter with Down syndrome. His wife said that after they saw the movie, they pulled their daughter out of her day program and realized she could live an independent life. And we’ve heard that from other people, that they’ve made life changes. Zack was working on a PSA when he was out in LA last week on employment of people with disabilities. One of the other actors was a man with autism. This man is a young man, and he came over and he gave Zack a superhero cape that he said he would wear to get strength. This young man had recently attempted suicide because things were so difficult in his life, but he said after he saw the movie that he had the strength inside and he can accomplish his goals and dreams, too.

Rohe: Wow, that’s nice. So, Zack, that must make you feel pretty good.

Zack Gottsagen: Yeah.

Rohe: Did you ever think anything like this would come about, to where people looked at what you’ve created in the movie and had that kind of response?

Zack Gottsagen: I would say it’s for everybody in the world to see. To inspire the world.

Shelley Gottsagen: When we talked about doing the movie, the goal was to change the world for people with disabilities and to make the world see that everybody has talent, everybody has ability. It’s so necessary. I got involved with the disability rights movement back in the 1970s fighting for curb cuts at my college at Penn State.

Rohe: Wow, good for you! I had no idea you had this background. This was before Zack was born, then?

Shelley Gottsagen: Yeah, it was way before Zack was born. In fact, I’m a social worker, but I quit my first job because I didn’t believe in the institutionalization of people because of disabilities. So, way, way, way back in the ‘70s, I did a lot of activism on the disability rights movement. I ended up as the director of a center for independent living and worked as the development director for CILs for 18 years. It was just fate that Zack ended up being my kid.

Rohe: I’ve been thinking about that.

Shelley Gottsagen: It was like, it was just one of those things that’s so cool. I was fortunate that I didn’t buy into the whole medical establishment bullsh*t. Like, when he was born, they said he’d never walk or talk. He’d be a total vegetable, and I had to put him in an institution. This is New York City in 1985.

Rohe:’85?

Shelley Gottsagen: I looked at them and I said, “It’s a good thing I’m a vegetarian. I’ll take my vegetable to go.”

(laughter)

Rohe: Oh, ouch! That’s a t-shirt!

Shelley Gottsagen: I was fortunate that I have a strong civil rights background, too. I did anti-Klan work for years, so I could stand up. We did one of the very first ADA suits after the ADA passed against Little League for refusing to allow kids with disabilities to play.

We asked that every coach in the system, every coach throughout the U.S., be trained to include kids with all disabilities. The ACLU took the case on Zack’s behalf.

Rohe: So, Zack, you’ve been quite familiar, then, with your mother’s antics?

Zack Gottsagen: Uh, yes, I have.

Shelley Gottsagen: (laughs) Zack has always been an excellent advocate. When he was in school, he conducted his own IEP meetings.

Rohe: Oh, my gosh!

Shelley Gottsagen: By the time he was in middle school, and Zack was a better advocate than I am because he’s very diplomatic. I get angry. He gets quiet and he stands up and folds his arms and says, “I’ll wait for you-all to be quiet, and then we can proceed and move forward.” They had started a program when he was getting out of high school. They selected eight students with intellectual or developmental disabilities, whatever, to go to this college thing. He was one of the eight students who were picked. He started it, and then he called a meeting. I had no idea what he was going to do. He said, “You know what? This program, I’m auditing classes, but other people go to college and get degrees. You’re not giving me a degree. You’re having me work in the cafeteria saying you’re giving me work experience, but other people work; and when they work, they get paid.” He said, “I just can’t get the difference between your program and slave labor.” (laughter) I was flabbergasted. He said, “I’ve studied fascism, and this really resembles it.” (laughs) I was happy he had gotten into this program, but he said, “I want to let everybody know, Mom and everybody else, I’m outta here. This is not the way people should be treated.”

Rohe: Wow!

Shelley Gottsagen: He’s a remarkable advocate.

Rohe: Any comments on that Zack?

Zack Gottsagen: No. (laughter)

Shelley Gottsagen: He’s been really great at standing up, not only for his rights, but he would go in front of the county commission and give them hell on para-transit and how they pull up and expect people who use wheelchairs to get down and there’s no curb cut there. Or he would talk about issues around people with autism, with any type of disability. He was very articulate and able to confront the county commissioners or legislators on their bullsh*t.

Rohe: Yeah, getting off a bus and there’s no curb cuts, there’s always an area of disconnect that, “It’s not my job. That’s city planning.” It’s amazing how people disconnect and don’t want to take on having common sense on certain things.

Shelley Gottsagen: Yes, yes. Remember when you were talking to them about that, in front of the county commission?

Zack Gottsagen: Yeah.

Shelley Gottsagen: Yeah, you were pretty young when you were doing that, too.

Rohe: So, he was working for people with mobility issues? Zack, you’re not using a wheelchair, right?

Zack Gottsagen: No.

Shelley Gottsagen: Never. But he had friends who did.

Zack Gottsagen: Yeah.

Shelley Gottsagen: Also, when I was fighting to get Zack into that School of the Arts, we were fighting on behalf of several kids with disabilities. The one who still kills my heart because I didn’t win this one was a kid with autism who was a filmmaker, so talented. And they said when he went in front of the judges, he didn’t make eye contact. And I’m like, “He makes perfect eye contact with the camera. What else do you want?”

Can I tell one more Zack story?

Rohe: Sure.

Shelley Gottsagen: When Zack was in fifth grade, he was on safety patrol. Everybody on safety patrol gets to go to Washington DC. But they said Zack couldn’t go because they won’t take a student with a disability. So, we filed with the Office for Civil Rights, and of course they ruled that Zack has to go. He has the same rights an anybody else. So, when we showed up that morning, they said that because he has a disability, he has to use a wheelchair.

Rohe: What?!

Shelley Gottsagen: Well, I was about ready to wring somebody’s neck. And Zack, very calmly back then, luggage didn’t have wheels on it, and very calmly Zack said. “Mom, I’ll handle it.” Here he was in fifth grade, and he said, “Anybody who wants to be in my group, we can put all our luggage on the wheelchair. We can just push it and get around faster!” (laughter) He’s always been able to think out of the box. He says, “It doesn’t pay to get mad. Just figure out a better way to do it.” He’s taught me. He’s been my teacher in terms of advocacy. He does it with such flair. (laughs)

Zack Gottsagen: I love you, Mom!

Shelley Gottsagen: I love you, too, kiddo!

“Feature image courtesy of a Global Down Syndrome Foundation. Zack received Global’s Quincy Jones Exceptional Advocacy Award at their 2018 Be Beautiful Be Yourself Fashion Show, the largest fundraiser for Down syndrome in the world,” bebeautifulbeyourself.org/zack-gottsagen

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