4 hours ago
6
After I watched Siân Heder’s “Being Heumann” in the weeks leading up to its world premiere as the opening night film at this year’s Toronto International Film Festival, I had a long list of things to talk to the filmmaker about.
Top of that list: curb cuts.
Curb cuts — those graded concrete ramps at the edge of sidewalk corners that allow anyone and anything with wheels to glide gently onto the street below — aren’t really the sort of thing most people think about. But if you need them, if you’re in a wheelchair or pushing a stroller or dragging a heavy suitcase, they’re tough not to think about. It’s hard to jump off a curb if you can’t, well, jump. At best, you need help. At worst, you just can’t do it.
That’s where Heder’s film opens.
Starring British actress Ruth Madeley as the iconic activist Judith Heumann, “Being Heumann” wastes no time putting our star in the middle of a busy New York City street, with not a curb cut to be seen. She doesn’t really have a choice. A wheelchair user for most of her life (Heumann contracted polio as a toddler), Heumann grew into the “Mother of the Disability Rights Movement,” and the film finds her at an important crossroads.
First, she needs to be able to navigate the world around her, which was simply not built for her. No curb cuts.
But things are changing. When the film begins, the first U.S. federal civil rights protection for people with disabilities, Section 504 of the Rehabilitation Act of 1973, has been signed, but no one is putting it into actual action. Heumann set out to change that. The film jumps ahead four years, following Heumann as she leads hundreds of fellow activists and disabled people into a massive protest, including a historic sit-in in the San Francisco Federal Building that lasted a month.
It’s real history, but it’s also rousing and funny and entertaining. And deeply human.
It is, of course, very similar to Heder’s previous film, “CODA,” which followed a deaf family and their one hearing child as they navigated a world not built for them. The film premiered at the 2021 Sundance Film Festival, where it proved to be a huge crowdpleaser (no easy feat, as that edition of the festival was held entirely online). A year later, it won Best Picture, changing Heder’s life forever.
After her big Oscar win, Heder had some immediate needs to meet. “I had worn these high heels for so many hours the night of the Oscars that my toes went numb, and it took maybe two months to come back to life and have feeling in my toes again,” she told IndieWire with a laugh. “But there was a moment of recovery, not just from the energy that it took to go through an awards campaign, to do a Q&A every night, to fly all over the world with the movie, but also the adrenaline leaving your body, which was a very intense feeling.”
Choosing what project she’d take on next was also top of mind for Heder, who admitted that it took awhile for her to get back into the process of actually creating after spending more than a year sharing “CODA” with the world. That was intense, too.
“It’s shocking moment as a filmmaker, because suddenly there’s a bunch of eyes on you that were never there before,” she said. “‘What are you going to do next?’ and ‘How are you going to follow that up?’ It took some time for me to tap back into why I tell stories and what moves me. I developed a lot of projects. I had maybe five different movies that I was developing or writing or overseeing a writer on and didn’t really know which one would come together first.”
On the set of ‘Being Heumann’And then there was “Being Heumann,” which Heder has been working on in earnest for about five years. She first met Heumann at Sundance in 2021, when Nicole Newnham and James Lebrecht’s documentary “Crip Camp” premiered, in which the irrepressible Heumann appeared as a young woman. (Heder also co- wrote the script alongside Rebekah Taussig, based on Heumann’s autobiography.)
“It was before ‘CODA’ had come out, it was before I had taken the whole Oscar ride,” Heder said. “I had been drawn to this story because it was a great story, long before I was thinking about what’s the right move in the industry or how do you follow up a film that goes on to do [win Best Picture]. It was just very close to my heart.”
There was also Judy Heumann. Heder said she knew from her very first meeting with Heumann that she wanted to make a film about her. She hadn’t even been aware of Heumann until she saw the documentary, and then? She couldn’t take her eyes off her.
“There’s a scene where she’s yelling about lasagna in the cafeteria at summer camp, and I was like, ‘Who is this woman?’ She looked like she was conducting a senate hearing, but she’s talking about what they’re going to have for dinner,” Heder said. “I was very intrigued by her as a character, but I felt like there was a deadly version of this story, which would’ve been a traditional biopic.”
Heder had been working with Heumann for nearly two years before Heumann died in March 2023. Heder said she had a “a very strong feeling that Judy died having chosen me to make this movie and tell the story, and so there was a sense of responsibility to her and her legacy.”
There was also, by her own telling, “a little bit of fear of, if I follow up ‘CODA’ with another film that’s about disability, are people going to put me in that box? But after ‘CODA,’ I had a rare moment of power in the industry where a lot of people wanted to make what I wanted to make. There was a moment where I could have used that capital to go make a Marvel movie and get a big paycheck and move out of my small home in Eagle Rock or use the capital to try to tell the hardest story I could imagine trying to tell and probably a film that not a lot of people would’ve financed or gotten behind.”
She went with the latter. “I knew it was going to be an all-disabled cast with a lot of new actors and without movie star names, and it was a period piece and it was more expensive than your average indie movie,” Heder said. “So it felt like if there was ever a moment that I could push it through to tell this story, that was the moment I was in.”
‘Being Heumann’And while it was not an automatic yes from Apple, which also distributed “CODA,” Heder said, “They believed in the movie for sure, and they believe in me as a filmmaker. But, on paper, this movie is a challenging film.” Those challenges went beyond the already-daunting needs around casting.
“Yes, on one hand, it’s a story about a disability rights activist in the 1970s,” Heder said. “It was important to me that the film not feel like ‘eat your spinach’ or that it was not there to educate people on something important that they should know about. What I pitched to Apple is ‘I want to make “Dog Day Afternoon” with disabled people. I want to make a story that has a lot of momentum and humor.’ These people were building sex tents in the hallway, they were smoking pot, and the Black Panthers showed up! That’s a movie that I think will be fun to watch and joyful and entertaining. They understood not just that I was trying to tell the story, but the way I was trying to tell it.”
While Heder eschewed any “eat your spinach” angles, she’s still very passionate about sharing the incredible impact of Heumann’s work in the disabled community. “Most disabled people at the time didn’t even really understand that they could demand to be a part of society or demand equal rights,” Heder said. “There was a feeling of, ‘Well, your body is broken, so you don’t deserve to leave your house,’ and I think a lot of people had internalized that, and Judy awakened that understanding in a lot of people.”
Judy Heumann’s story also awakened a different understanding in Heder herself. The film doesn’t canonize Heumann, instead showing her as dedicated leader who is also prickly, brash, and set in her ways. Heder didn’t just want to tell a story about a leader, but what it actually takes to be a leader and continue growing in that role.
“There are so many tropes around disability, so the idea of meeting this young person who feels invisible and finds her voice and becomes an activist and comes into her power was the more expected story,” the filmmaker said. “But meeting someone who is at the height of their power, who has this radical empathy where she’s fighting for people to be seen and heard, and yet has a really hard time seeing and hearing and including other people, was a much more interesting character arc. On one hand, Judy is fighting for this group of people to be seen as human. But being a human on a very basic, connective level? Saying thank you to the people who are helping you, being kind, putting the people first? That was also a journey Judy had to go on.”
There’s a moment in the third act of the film when Judy is unable to physically be at the San Francisco sit-in. She not only has to trust that the more soft-spoken Kitty Cone (Madeline Delp), who has become her closest confidant, can keep the sit-in going in her absence, but she must also say that to her. You can see how hard that is for her, but how revelatory, too.
“I do think, as a director — and not to say ‘woman director,’ because I hate constantly qualifying director with my gender — there was a feeling when I started out as a young woman that I had to always have the answers, always seem in control and I knew what I was doing because if I expressed any self-doubt or any waffling, it would be perceived as ‘she doesn’t know what she’s doing,’” Heder said. “It took me a long time to get comfortable enough with my skillset, with my ability to be on a set, and go, ‘I actually don’t know. I actually don’t know where we should put the camera right now. What do you think?’”
‘Being Heumann’Casting that kind of powerful person to portray Judy was charged on many levels. There was no question that Heder would find a disabled actress, but how do you cast someone to be Judith Heumann, so naturally without peer? Heder had worked with the real Judy for years. She knew all the important people in her life.
“There was an intimacy that you almost never have with your lead character,” Heder said. “Yes, Judy was a wheelchair user, but that was one element of her identity. It was also about Judy’s blunt sense of humor, Judy’s directness, Judy’s drive, Judy’s sense of humor, and all of those qualities were things that I was looking for. It was trying to find someone that physically resembled her, who also could embody her energy, which was very specific.”
She likes to joke that her casting directors, Bernie Telsey and Adam Caldwell, had to take on the “casting Olympics, because every character was a unicorn.” “I was like, ‘Hey, go find me a 19-year-old Black blind man who can sing, who has this relentless optimism and just embodies Dennis Billups,’” Heder said with a laugh. (They did, with first-time actor Charlie Rush-Reese, a gem in a sea of them.)
She found Madeley in a slightly different way. “I was working with a deck designer to put images together when I was trying to get the movie greenlit at Apple, and he was British, and he said, ‘This character really reminds me of this actress, Ruth Madeley. Do you know her work?,’” she said. “I didn’t know her, but she was in this film called ‘Then Barbara Met Alan,’ and I watched the film and I could see exactly what he was talking about. She has an earthy, wry humor, and she exudes intelligence and has this big well of emotion and vulnerability.”
Still, Heder said with a laugh, she didn’t make it easy on Madeley. “Ruth had done so much work before I ever met her, but I put her through the ringer. I auditioned her many times,” Heder said. “I saw many, many actors for that role, and she truly won that part. I knew it was going to be an incredibly difficult film to make, and I felt I really had a partner with her. Even aside from performance, which is the most important thing, having a true collaborator in your lead actor is invaluable as a director.”
Heder’s film is filled with incredible star turns by a number of new (and, in some cases, brand-new) performers. Among their ranks is, however, one very recognizable name: Mark Ruffalo, cast here as Joseph Califano, the Secretary of Health, Education, and Welfare. He’s the guy who needs to sign the meaningful regulations that would put 504 into actual action. And, for most of the film’s running time, he refuses to do it. He’s the bad guy of the story, sort of, and to have an outspoken activist like Ruffalo in that role adds real dimension to the part.
“Mark is someone who has been unafraid in his life to be principled and stand by those principles, whatever the cost,” Heder said. “And Califano was someone who really considered himself a good guy and had, throughout his career, protected the Selma March, pushed forth the Great Society Program, had stood with the students at Kent State, and really felt like ‘I’m on the right side of history.’”
When the film begins, he has just started to work for President Jimmy Carter, and the pressure is on. The president gave Califano a strict mandate: cut the federal budget by $3 billion. He was less than three months into his job when the sit-ins began. The moment he signed the 504 regulations, he’d have 60 days to enact the necessary changes to meet its requirements. And they would cost $3 billion.
“The more I read about Califano, the more I felt like you could tell this story from his perspective, you could absolutely understand that he was between a rock and a hard place, but that’s when people’s principles are actually tested,” Heder said. “In my first meeting with Mark, he was talking about fear, and there are a lot of politicians now who are living in a state of fear, whether it’s their reelection, whether it’s losing money that backs their campaign or offending lobbyists or constituents.”
She added, “The reality is, the movie is not speaking to a mustache-twirling villain who is out to make life hard for disabled people, it’s speaking to the good guys who are stuck in inaction because it feels too hard or too scary. That’s very timely for me, because we all have something to protect that you risk by going out on a limb and announcing what you believe in. There’s a lot of fear right now, and we see it real time, and so there are actual repercussions to speaking up and standing by your morals.”
‘Being Heumann’Inaction isn’t Heder’s bag. In making a film like “Being Heumann,” which is literally about the fight for accessibility, there was no question she had to build a production that was comfortable, creative, and open for all. That didn’t scare her. Why should it? It’s attainable.
“With ‘CODA,’ we were trying to make a set accessible to a deaf cast, which was one very specific thing, and so it was about communication and ‘where do we put interpreters?’ and ‘how do I call action and how do I call cut?,'” she said. “But it was all working toward meeting a very specific set of needs on this movie because it was cross-disability. Someone who is paraplegic has very different needs than someone who is an ambulatory wheelchair user versus someone who lives in chronic pain. It was about making a set that is accessible to a deaf cast at the same time that you’re making that set accessible to a blind actor. And we didn’t know what we didn’t know.”
Heder and her crew had to figure out how to navigate everything from ramps to scripts. How do you do a table read with a blind actor? How do you do ADR when they can’t see their own mouth moving? How many braille scripts do you need? Will audio earpieces help? How many interpreters need to be there for the deaf performers?
“At every stage of the process, we were coming up against these hurdles that were unexpected, even though we had built an accessibility team and we had really done our best to do intake forms for every actor to understand what their needs were on set,” Heder said. “A lot of our cast had never been in a movie before, or some of them were non-actors and so didn’t even know to ask, didn’t even know what they would need to ask, because it’s very different to say, ‘Yes, I’m fine in a vintage wheelchair, but are you fine in a vintage wheelchair for 12 hours?’ Because that’s what a movie set is. There was a lot of real time adjusting that had to happen and problem-solving in the moment. It never stopped.”
Heder is clear, however: this was worth it. “I never want people to take from this at all that it is too hard to work with a disabled actor, I think it’s about knowing what you need,” she said. “Once we figured out what people needed, it really did flow and run as any other set would. It was just a learning curve figuring out what those accommodations were. Judy impulsively led a hundred disabled people into this federal building, many of whom went in without their attendants or their caregivers and then had to figure out how to survive in this building over this 30 days. They all had to find their superpower in their own disability.”
The challenges they faced (and overcame) also helped align them with what Judy Heumann and the rest of the protestors felt during the sit-in. “When I interviewed Dennis Billups, who is blind, he said he was standing lost outside the protest, and he offered to push a wheelchair user if they would guide him into the building,” Heder said. “There was all of this interdependence that started to happen in the protest that was about survival, and that happened in real life on our set, where our cast started jumping in to fill each other’s needs in a way that is very hard to describe and was incredibly profound.”
I mentioned how touching it is to see the way that Heder shows that on the screen, that everyone is useful and that everyone has something that they can do, when she added a compelling corollary. “Not only is everyone useful, but everyone needs help,” Heder said. “Everyone needs help. It’s not just the disabled cast that needed help. There were moments where my non-disabled cast needed help, and there were moments where people on the crew needed help.”
She continued, “It’s like the same way when I was a new mom and I was pushing a stroller around the city, ‘thank God for curb cuts,’ or getting off the subway in New York City and having to lug a stroller up the stairs, ‘thank God for the elevator.’ We all have these moments where you understand that accessibility helps everybody. We built ramps onto our set from every direction, and the grips were like, ‘Thank you. We are lugging thousands of pounds of equipment, and this is the first set I’ve been on where there are ramps everywhere you look, and we can wheel that stuff up.'”
It’s the exact lesson we see in the film, and one that people still need to be reminded of: we can make the world a better place for everyone, but we have to work together.
“I remember there being a big scandal or pushback when there were directors who came out and said, ‘I don’t allow chairs on my set,’ and what you are saying through that,” Heder said. “I understand the intention, which is ‘I want people committed and energized and not kicking back and not participating.’ However, you are also saying that you are not inviting anybody onto your set that cannot stand for 12 hours. … When you refuse to provide any accommodations, you are shutting off an avenue to so much talent and creativity.”
Heder added, “That was the thing I really felt more than anything on this. It was profound to me that what Judy did with these protestors, how this group of people physically changed our world. It’s things that we all take for granted, now that there are curb cuts or Zoom or FaceTime or even texting. All of these moments of innovation came out of inclusiveness that are now accepted as our reality.”
Thank God for curb cuts.
“Being Heumann” will premiere at the 2026 Toronto International Film Festival. Apple will release it in theaters on Friday, November 13.
English (US) ·