How the Biopic ‘Being Heumann’ Pulls Off Two Revolutions

With a punk-rock spirit and a trailblazing disabled cast, director Siân Heder and star Ruth Madeley bring a lesser-known civil rights uprising to life, while challenging the Hollywood status quo

Judy Heumann is just trying to cross the road in her wheelchair. It’s New York City in the 1970s, and the streets are chaotic. Traffic barrels past, pedestrians crowd the sidewalks, and the concrete curbs are steep cliffs. Unable to get her wheelchair up onto the sidewalk, she rolls in the middle of Madison Avenue, giving the middle finger to a city bus driver behind her who is laying on his horn. 

Set to the propulsive guitar riff of Iggy Pop’s proto-punk anthem “The Passenger,” the opening sequence of Being Heumann — a new biopic about the disability-advocacy pioneer — introduces a woman who refuses to be dismissed and has zero patience for anyone standing in her way as she navigates through potholes, puddles, and pedestrians.

“You are not introduced quietly to this character,” says Ruth Madeley, who portrays Heumann. “You literally meet her in utter chaos and noise. She’s unfazed because she is doing that every damn day of her life.”

Denied access to school until she was nine years old because administrators considered her and her wheelchair a fire hazard, Heumann later sued the New York Board of Education for the right to become a teacher. Her fight for equal access grew into a lifelong crusade. 

In 1970, she co-founded Disabled in Action, a grassroots advocacy organization, and went on to become a leading voice in the independent living movement. Her activism helped pave the way for landmark legislation including the Individuals with Disabilities Education Act and the Americans with Disabilities Act. Audacious, confident, and fiercely determined, Heumann became known as the “mother of the disability rights movement,” helping to transform disability from a matter of charity into a question of civil rights.

Siân Heder, the 2022 Oscar-winning director of CODA, first encountered Judy Heumann in the 2020 Sundance-winning documentary Crip Camp. When she read Heumann’s memoir, from which the film takes its title, Heder saw a fascinating contradiction in a leader who demanded humanity from the world but sometimes struggled to recognize the limitations of those around her.

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In Being Heumann (now streaming on Apple TV), we see Judy charismatically inspire fellow disabled activists into action. And we also see when she pushes them to take on more risk than their bodies might be able to endure, like a hunger strike she urged others to take part in, even if that wasn’t wise considering their medical conditions. 

“The title took on these other levels of meaning,” Heder says, “where it’s as much about Judy having to learn how to be human as it is about her asking the world to treat this marginalized group of people as human.”

For Madeley, portraying the fierce and complicated civil rights icon was “the biggest acting undertaking of my life. Finally, I get to play somebody who gets things wrong? Who is kind of brash sometimes? Who is so focused that she sometimes can alienate people,” Madeley says.

After the opening scene in New York City, we fast forward five years to April 1977 San Francisco. Rather than attempt to chronicle Heumann’s entire extraordinary life, Heder and her co-writer Rebekah Taussig focused the film on Heumann’s organization of a sit-in protest for Section 504, the first federal law that protects against discrimination based on disability. Heumann and her coalition of more than 100 disabled protesters staged the longest peaceful occupation of a federal building in U.S. history.

But Being Heumann isn’t your typical reverent biopic or a pedantic history lesson. Heder turns the fight for Section 504 and disability-rights legislation into a kind of high-stakes caper – an outrageous pursuit of an almost impossible prize. 

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Heder recalls, “When I got to the section on the 504 [protest], I thought, ‘Oh, this is Dog Day Afternoon with disabled people. This is a bank robbery with people who don’t know how to rob a bank.'”

 ”This is a heist movie with a group of people who no one would expect to see in a heist movie,” Madeley says. “They weren’t going in for money or jewels. They were going for their rights. It was so much more expensive and so much more precious.”

EVERY GREAT HEIST HAS a plan within the plan, a twist the audience never saw coming. For Being Heumann, that second heist happened behind the camera. “Judy’s next mountain, her next mission, was Hollywood,” Madeley says. 

Before her death in 2023, Heumann turned her attention toward the entertainment industry’s dismal record on disability representation. A 2019 Ford Foundation study authored by Heumann revealed “that disabled people were one in four in the population, and the media representation was under three percent,” according to Heder. “When disabled roles came up, they were played by non-disabled people.” 

Some of this discrimination may be due, Heder says, to archaic ideas about the physical grit required for the job. “There’s an ethos around filmmaking where you die for the movie, and it’s like war, and it’s a badge of honor that you can’t walk at the end of every day. And what it’s done is exclude a lot of really talented people who can’t be on their feet for 14 hours,” Heder says.

Committed to upending that status quo, Heder hired widely from the disabled community. Being Heumann features 12 disabled leads and, at times, up to 60 disabled background performers. She was also determined to address inaccessibility on set. While the art department filled in modern curb cuts to recreate the inaccessible streets of the 1970s, the Being Heumann accessibility team was simultaneously building ramps, installing lifts and modifying trailers to make the set accessible.

For Madeley, who uses a wheelchair, the difference was transformative. “To have accessibility completely cared for, I was able to show up every day as an actor, and I didn’t realize how liberating that was.”

The film’s most powerful intersection of historical activism and present-day disability experience comes during a congressional testimony sequence. One by one, the disabled protesters share the indignities and injustices that have shaped their lives. Heder invited the actors to draw from their own experiences, blurring the boundaries between historical reenactment and personal testimony.

“I met with each actor and asked them what aspect of their experience they would be interested to share. What followed was one of the most powerfully cathartic experiences I’ve ever had on a set,” Heder says. “We rolled the camera in one long take, allowing actors to take turns coming up to the microphone. I sat by the camera and interviewed them, sometimes as their characters and sometimes as themselves.”

The scene transforms a decades-old debate about federal regulations into a profoundly contemporary portrait of discrimination, dignity, and belonging. “We were building something bigger than us. Whatever the outcome of the movie, we were allowing people who had been unseen and unheard to be centered,” Heder says.

AFTER 26 DAYS, THE protesters in San Francisco achieved what many believed impossible. Secretary of Health, Education and Welfare Joseph Califano (played in the film by Mark Ruffalo) signed the Section 504 regulations, establishing enforceable federal protections against disability discrimination and helping lay the groundwork for the Americans With Disabilities Act, passed 13 years later in 1990.

On the final day of filming, Madeley recalls when first assistant director Walter Gasparovic wrapped production by calling out the names of every cast member, including the background performers. Like the activists they portrayed, the cast and crew pulled off something Hollywood long considered impossible — an accessible production with one of the largest ensembles of actors with disabilities in history.

Madeley remembers thinking, “We did it. We pulled off the heist!” 

But even in that triumphant moment, she could hear Judy urging them onward. “I could literally feel Judy being like, ‘That’s great! Now get in the edit.’” Because for Judy Heumann, a hard-won victory was never the end of the fight. It was simply the beginning of dismantling the next obstacle.

At the Los Angeles premiere of Being Heumann at AFI Fest, Heder discovered that the historic theater hosting the celebration had an inaccessible stage and backstage area, preventing members of her cast from participating onstage and forcing the Q&A to be relocated to the middle of the auditorium.

Even as Hollywood celebrated a film about disability rights, the building itself was excluding the very people whose story it was honoring. Heder publicly called out the theater during the premiere. “I had to say something because Judy would.”

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“Hollywood’s all about world-building,” Madeley says. “We build buildings. We build car chases. We build things that we can set on fire. Things are done in the industry that are hard and expensive. Building a ramp is not that big a deal. Hollywood, no more excuses. We’ve done it.”

“Being Heumann” is now streaming on Apple TV, debuting alongside a new accessibility feature offering optional onscreen ASL and BSL interpretation. The film’s sign language interpretation was directed by “CODA” and “Being Heumann” cast member Daniel Durant.