After CODA won Best Picture at the 2022 Oscars, director Siân Heder grabbed a coffee with fellow Best Picture winner Guillermo del Toro, looking for advice.

“I was very torn between projects,” Heder told Decider in a recent Zoom interview. “He said, ‘Make the movie that can’t get made without you.’”

For Heder, that movie was Being Heumann, a biographical drama about disability rights activist Judy Heumann, which began streaming on Apple TV today, after a limited run in theaters.

“I knew in my heart that this was the one that probably wouldn’t get made if I didn’t push it forward,” Heder said. “And if it wasn’t my next film after CODA, I wasn’t sure I would ever have juicer power in the industry again to be able to make it happen.”

Being Heumann, as Heder pointed out, is not an easy yes for most Hollywood studios—especially given that the director wanted to do it right, with a cast of entirely disabled actors, who required a fully accessibly set, interpreters, special assistance, and more. But Heder had been hand-selected by the real Judy Heumann to direct the film adaptation of Heumann’s 2020 memoir, after the director cold-emailed the activist at the exact right moment (after seeing the 2020 documentary Crip Camp, whose director, James LeBrecht, is a producer on Heumann). Heder had already had multiple conversations with Heumann and forged a friendship.

When Heumann died in March 2023 at the age of 75, Heder felt a weight of responsibility. So, she made it happen. She hunted down the perfect cast, with Ruth Madeley, an award-winning actress with spina bifida, at the lead. She had an accessible set built. She immersed herself in the disabled community. And she made got the impossible movie made, telling the story of the activists who staged a sit-in in 1977 to get legislation signed that would change accessibility standards in the U.S. forever.

“It was important to me that the world know her name, and know what this small, raggedy group of activists in the 1970s pulled off,” Heder said. “It’s why our world looks the way it does.”

The director spoke to Decider about getting the movie made, her conversations with the real Heumann, and the film’s stand-out sex scene.

DECIDER: You mentioned in your director’s statement that after Judy Heumann died in 2023, you used all of your clout from winning the Oscar for CODA to get this movie made. Can you talk to me more about that decision?

SIÂN HEDER: On paper, this was an incredibly difficult movie. It was a period piece with a large ensemble of all disabled, unknown actors. There’s real resistance in the world to telling stories around disability, based on the fact that there’s almost no representation in the media or in movies.

There were a lot of voices after CODA won Best Picture telling me what I should be doing next. I had been working with Judy, developing this project, before CODA even came out in the world. There was a period of needing to return, as a filmmaker, to why I tell stories—what moves me, compels me, and is a film that I would like to see in the world. I remember having a coffee with Guillermo del Toro. I was very torn between projects and not sure which movie to do. I asked him how he makes decisions and he said, “Make the movie that can’t get made without you.”

That was very clarifying for me, because I knew in my heart that this was the one that I felt probably wouldn’t get made if I didn’t push it forward. And also if it wasn’t my next film after CODA I wasn’t sure I would ever have juicer power in the industry again to be able to make it happen. That was a large part of my decision making. When Judy died, I felt that she had left her story in my hands. She had chosen me to be the one to tell it. It was important to me that the world know her name, and know what this small, raggedy group of activists in the 1970s pulled off, because it’s why our world looks the way it does. 

What conversations did you have with Judy before her death? What stories did she tell you that found their way into the movie? 

It was hard for Judy to open up to me at first, because, I think, she was so on message, as she is as a character. She’s very much about the cause and what she wanted people to know. I would always ask her, “Judy, who were you having sex with in the building? Tell me about the time you got high.”

She would go, “Well, who cares about that?”

I said, “That’s what’s gonna make the movie. Those elements of times that you were uncertain, moments that you had fear or didn’t know what you were doing, that’s what makes you an interesting character.”

Judy, later in life, had worked in two presidential administrations. She was a very polished leader. When the movie takes place, she was 28 years old. She didn’t really know what she was doing. She was acting very impulsively, sometimes at the detriment of the people around her, because she was a rebel and didn’t really give a shit. There were so many elements to her that made her messy that were important for me to put in the movie.

She really did open up to me. Judy told me her boyfriend in the building was this guy, Jim Pechin [played in the film by Jon Beavers]. I interviewed two other protesters who were in the building, asked who they were hooking up with, and they both said Jim Pechin. I came back and confronted Judy about how her boyfriend was having sex with everybody in the building. She was like, “Oh my God, I have to call Lynette!” [She] ended up calling all these people and having it out, 50 years later.

I think it was really fun for her to think about this, not from an angle of her activism, but from the angle of what it meant as a young person to live through this time. There were so many beautiful things she shared with me—[like] what it was like for her to be intimate with a non-disabled person, and the power shifts that sometimes happen when you’re in a sexual situation with someone who has more mobility than you. Things that I think she was reluctant to share at first, but ended up telling me because we became friends, that were amazing texture to her character in the film. 

The sex scene shows Judy as a sexual person, but also acknowledges the danger of sexual violence for disabled people, with that moment where [Jim] pushes her chair away. Can you tell me about writing and filming that scene, and why it was important to include? 

Judy shared a story with me about a time she was almost assaulted on a blind date in New York. The thing that struck me about that story is, once he allowed her to leave his apartment, she couldn’t leave without his help. He had to pick her up off the bed and put her back in her chair.

She wasn’t assaulted, she sort of talked him out of the situation, but she was very emotional, explaining to me what it’s like to have someone you’re very afraid of pick you up, hold you, put you back in your chair, and then have to help you leave. There was no escape for her on her own. Judy was such a powerful person in the world. [She] intimidated a lot of people, and was this incredibly forceful, determined leader. But she was also a woman who had moments of intense vulnerability.

I love the sex scene, because she’s simultaneously exerting power and taking control of the situation — being a bold, sexual person, seducing the guy who’s caregiving for her in that moment. There are so many power shifts within the scene, that are very subtle, unsaid, and occur mostly on Ruth Madeley’s face, with this beautiful performance that she gives. That scene was very important for me to stay in the movie, because I think disabled people are never shown as sexual beings. And Judy was hot! Judy had a lot of lovers.