‘CODA’ didn’t change Hollywood’s attitude about disability. Siân Heder hopes ‘Being Heumann’ can

TORONTO (AP) — A line has been running through Siân Heder’s head lately: “What would Judy do?”

Heder, the director of the best picture-winning “CODA,” was taking a moment to reflect a few hours before she premiered her new film, “Being Heumann,” at the Toronto International Film Festival. The movie is about Judy Heumann, the disability rights pioneer, and the protest movement she shepherded that ultimately led to the landmark Americans With Disability Act.

Heumann died in 2023, but as Heder prepared to debut the film, she was very present.

“It’s really sad that she’s not here to see this,” Heder said, beginning to tear up. “I’ll cry with you so I don’t have to cry tonight. I think about her all the time. I hope she would be proud of the movie and the way that we made it.”

“Being Heumann,” which Apple will release in theaters Nov. 6 and begin streaming Nov. 13, is Heder’s attempt to not only pay tribute to the relentless, hardscrabble protest movement, but to challenge the way movies are made.

“CODA,” the first film featuring a largely deaf cast to triumph at the Oscars, already marked a watershed moment for the film industry. It derived much of its crowd-pleasing power from the charisma of Troy Kotsur and Marlee Matlin, both of whom are deaf. But five years later, Heder has seen any momentary embrace by Hollywood of the disabled community come and go.

In “Being Heumann,” the opening night film of TIFF, Heder again strove for authenticity in a cast peopled with disabled actors. On Thursday night, just the presence of the cast of “Being Heumann” was a statement.

“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,’” Heder 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.”

‘Dog Day Afternoon’ with disabled people

“Being Heumann” stars Ruth Madeley, a BAFTA-nominated actor born with spina bifida, as Heumann. It chronicles the historic 28-day sit-in when Heumann and more than 100 disability rights activists occupied the San Francisco Federal Building to demand the government sign the long-delayed accessibility regulations of Section 504 of the Rehabilitation Act of 1973.

Heder’s film derives much of its vibrancy from its day-to-day detail. Such a lengthy protest would be challenging for demonstrators without disabilities; for people in wheelchairs, it was dramatically more daring. But while “Being Heumann” captures that struggle, it’s also filled with a collective protest spirit. There is sex and drugs and rock ‘n’ roll. Heder calls it “‘Dog Day Afternoon’ with disabled people.”

Although Hollywood has made some gains in representation over the years, the industry still often overlooks people with disabilities. According to the Centers for Disease Control and Prevention, about one in four U.S. adults have some type of disability. Yet the USC Annenberg Inclusion Initiative has found that over the last decade, the number of disabled characters in popular films has held steady at about 2.4%.

That legacy — which includes a long list of dubious depictions by able-bodied actors — was part of what led Heder to make “Being Heumann.” Following the success of “CODA,” she had a wide array of options. She met numerous times with Marvel. But after seeing “Crip Camp,” the 2020 documentary that featured Heumann, reading her autobiography and working with Heumann on the film, Heder became resolved.

“I was incredibly moved by Judy’s story and her life, and her relentless pursuit of the desire to make this group of invisible people visible,” Heder said. “I could see with this film an opportunity to carry on that legacy in casting a bunch of unknown disabled actors. In a way, we were storming the building of Hollywood.”

Remaking Hollywood film sets

Little of the accessibility that Heumann and company sought in 1977 exists on film sets today. When Heder began prepping for production, she found one accessible trailer in all of North America. They instead built trailers from scratch, created a “ramp village” and empowered an accessibility team.

“We had to discover all the ways that the set could become accessible,” Heder said. “It was kind of reinventing moviemaking while we were making a movie. It definitely laid a path that other people could follow.”

The cast of “Being Heumann” includes some familiar names like Mark Ruffalo (who plays Joseph Califano, the government official reluctant to sign Section 504) and Dylan O’Brien (who plays the reporter Evan White). But much of the film’s lived-in authenticity comes from performers like Andrew Pilkington (who used his letter board to talk), Madeline Delp (paralyzed from the waist down after a car accident in childhood), “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,” said Madeley. “You can’t do that without proper accessibility. Being on the set of ‘Being Heumann’ really healed part of my acting journey. To have that on a Hollywood movie, that was my dream to see that.”

That doesn’t mean there weren’t challenges. But for Heder, authenticity and specificity are the only ways to tell a story. “I think generality is the enemy of representation,” she said.

And for her it was also creatively inspiring. For example, Heder described a moment on set when Rush-Reese and Durant were working together to transfer Rio Finnegan out of a wheelchair.

“The way the communication started to move around between the three actors was one of the most beautiful things I’ve ever seen,” Heder recalled. “Rio was having to narrate to Charlie with his voice while gesturing to Daniel with his body, while also acting as a translator between the two of them. That kind of interdependence was what kept this protest alive for 26 days. And I would never have been able to write that.”