Siân Heder Brings Disability Rights Pioneer Judy Heumann to the Screen

Director Siân Heder has been asking herself a question lately: "What would Judy do?" It was on her mind as she prepared to premiere her new film, "Being Heumann," at the Toronto International Film Festival. The film tells the story of Judy Heumann, a pioneering disability rights advocate, and the protest movement she led that helped bring about the Americans With Disability Act.

Heumann died in 2023, and her absence weighed on Heder before the debut. "It's really sad that she's not here to see this," Heder said, growing emotional. "I hope she would be proud of the movie and the way that we made it."

"Being Heumann" will be released in theaters by Apple on Nov. 6 and begin streaming Nov. 13. It serves as both a tribute to the hard-fought protest movement and a challenge to standard filmmaking practices.

Heder's previous film, "CODA," was the first movie with a largely deaf cast to win best picture at the Oscars, drawing much of its appeal from the performances of Troy Kotsur and Marlee Matlin. But five years on, Heder said the industry's embrace of disabled talent has faded. "I watched this incredible adjustment happen for 'CODA' in Hollywood, and then the moment 'CODA' was done, it was like, 'Phew, now we don't have to have interpreters anymore,'" she said. "Out of necessity, my cast showing up on a red carpet is going to force people to adjust. That's going to be messy, but interesting and important."

The film stars Ruth Madeley, a BAFTA-nominated actor born with spina bifida, as Heumann. It chronicles the 28-day sit-in in 1977, when Heumann and more than 100 activists occupied the San Francisco Federal Building to demand that the government sign long-delayed accessibility regulations under Section 504 of the Rehabilitation Act of 1973. Heder described the film as "'Dog Day Afternoon' with disabled people," noting its mix of struggle and collective spirit, including sex, drugs and rock 'n' roll.

Despite some progress in representation, disability remains underrepresented on screen. About one in four U.S. adults has a disability, according to the Centers for Disease Control and Prevention, yet the USC Annenberg Inclusion Initiative found that disabled characters in popular films have held steady at roughly 2.4% over the past decade. That gap, along with a history of able-bodied actors playing disabled roles, motivated Heder. After "CODA," she had many offers, including repeated meetings with Marvel, but she committed to "Being Heumann" after seeing the documentary "Crip Camp," reading Heumann's autobiography and working with her. "I could see with this film an opportunity to carry on that legacy in casting a bunch of unknown disabled actors," Heder said. "In a way, we were storming the building of Hollywood."

Accessibility on film sets remains limited. During preproduction, Heder found only one accessible trailer in all of North America. The production built trailers from scratch, created a "ramp village" and set up an accessibility team. "It was kind of reinventing moviemaking while we were making a movie," she said.

The cast includes familiar names such as Mark Ruffalo, who plays Joseph Califano, the official reluctant to sign Section 504, and Dylan O'Brien as reporter Evan White. Much of the authenticity comes from performers including Andrew Pilkington, who used a letter board to communicate; Madeline Delp, paralyzed from the waist down after a childhood car accident; "CODA" actor Daniel Durant, who is deaf; and Charlie Rush-Reese, who is blind. "The majority of sets I've been on, I've literally been the only disabled person. This is most of the cast," Madeley said. "Being on the set of 'Being Heumann' really healed part of my acting journey."

Heder said authenticity and specificity are essential. "I think generality is the enemy of representation," she said. She recalled a moment when Rush-Reese and Durant worked together to transfer actor Rio Finnegan out of a wheelchair, describing the communication among the three as "one of the most beautiful things I've ever seen." That interdependence, she noted, was what sustained the protest. "And I would never have been able to write that."