It was November 1972 when American disabled activist Judy Heumann took to the streets, quite literally, endangering her own life. In Madison Avenue, in midtown Manhattan, Heumann and others had arrived outside Richard Nixon’s campaign headquarters. Their concern was the Rehabilitation Act, which was then grinding its way through Congress. Designed to prohibit discrimination against individuals, the Act included a clause – Section 504 – that would change the lives of millions of disabled people. Yet it remained in limbo.

It was four days before the election when Heumann and her friends pitched up, frustrated by the treacle-like slowness of Capitol Hill. "They were outside Nixon headquarters and they were protesting and handing out flyers and no-one's paying attention," says filmmaker Siân Heder. "Judy looked out at the street and she was like, ‘You know what? Put me in the street.' She rolled into the middle of traffic – at rush hour. Put her body in incredible danger. And it was so punk rock and radical to go, 'That’s what it's going to take.'"

A crux event in the life of this remarkable woman, this brave piece of activism became the opening scene of Heder’s new film Being Heumann, or "the moment that made me want to make the movie" as she puts it. Heder, who previously directed the Oscar-winning film CODA, about a family led by hearing-impaired parents, has been working on the movie since 2020, after seeing the Academy Award-nominated documentary Crip Camp, which featured Heumann and told of a summer camp for teens with disabilities – and those who went on to become activists.

The same year, Heumann’s book Being Heumann: The Unrepentant Memoir of a Disability Rights Activist hit shelves, forming the backbone of Heder's movie, which she co-scripted with Rebekah Taussig. The core of the story comes five years after her New York protest in 1977. With President Jimmy Carter in the White House and Section 504 still not ratified, Heumann and other activists led a 24-day sit-in, the longest in American history. Entering a public building in San Francisco, they refused to leave until the secretary of health, education and welfare, Joseph Califano, signed the regulations.

Heder met Heumann shortly after reading her book, spending three years getting to know the real subject of her new movie. "It was an experience of getting Judy to open up because Judy was so on message," she reflects. "Oftentimes I would interview her about something, and then I would go talk to her friends, and then I get the real story, and then I come back and be like, 'Hey, Judy, I heard you got really way too high before that hearing, and then you had hid in the closet and covered yourself with paper towels because you were so high that you couldn’t go out and talk to the person.' She’d go, 'Oh my God, I forgot about that!'"

Playing Heumann in a remarkable performance of defiance is British actress Ruth Madeley. The Lancashire-born star, who was born with spina bifida, is best known to homegrown audiences for starring in Russell T Davies's Years and Years. But becoming Judy Heumann was the challenge of a lifetime. "From a perspective of just career-wise, this was always my aim, my plan," she says, sitting alongside Heder when we meet during the London Film Festival. "This is what I’ve been working towards: leading a Hollywood movie. To have this for me was huge."

She calls Being Heumann, quite rightly, a "punk rock" movie. "Just the whole Revolutionary fight and excitement of it, it feels electric to me when I watch it as well as when we were doing it. It's just so timely. The tone of it is electric rather than 'Oh look isn't that wonderful, all these disabled people doing such wonderful things – well done.' It wasn’t that. There was rage, there was frustration and there was excitement and fun in there. It was just such a badass period in all of their lives."

Heder ensured that punk spirit worked its way into the soundtrack. "The music of the time was about rebellion and was about protest," she notes. Among the chosen songs, the incredibly apt track by The Ramones, 'Judy Is A Punk' and Iggy Pop’s 'The Passenger'. "I wrote to so many people [to ask for music rights]," adds Heder. "I wrote to The Ramones. I wrote to Iggy Pop, and I didn’t know if I should call him Iggy or Mr Pop! I can’t be like, ‘Dear Mr Pop'"

Heder even contacted Stevie Wonder, the sight-impaired singer-songwriter whose "joyful" song 'Sir Duke' features at a crucial point. "Stevie Wonder is obviously a part of this community, and so I had tried to use his music for CODA. And so I wrote him another letter just about what the movie was about, and he gave us that song. An deal on that song." In her eyes, artists like Wonder made the movie feel big. "This was not a little niche story. This could be a movie with mass appeal that could be for a big audience and reach a lot of people. Because I think people need to know Judy’s name."

The fact that Heumann died in 2023, aged 75, also super-charged the story. "I felt intense responsibility when she passed away," says Heder. "I had so many questions. I had Post-It notes all over my desk: 'Ask Judy about this. Ask Judy about that.' Things that I didn't know if I could put in the movie. I really had to rely on her family, her friends, people that were still involved to feel like I was honouring her and also showing the sides of her that weren't so likeable and rubbed people the wrong way or had some friction."

For Madeley, playing Heumann meant understanding her experience, with the activist contracting polio when she was young, confining her to a wheelchair. "There was the moments of the sheer frustration that she had that built up since she was tiny. I mean, she wasn't allowed to go to school until she was 11 years old. She watched her mum every year fight to get her in school, and be told no. And I could really relate to that, seeing my Mum fight for me at my school. So there was that building of frustration that you could show just bubbling underneath."

At the time of the sit-in, Heumann was just 29 years-old – and despite being "such a fearless leader", as Madeley puts it, there was doubt in her mind. After all, her fellow protestors had all different disabilities – from cerebral palsy to hearing and sight issues. "She was unsure and uncertain of how to get this right and lead so many people with so many different needs," says Madeley, "and she knew exactly what she wanted as the end result. She knew what the end result should be, but she wasn’t always sure of how to actually get there."

Heder's film is unafraid to show that Heumann was not the easiest person to deal with – with one character even referring to her as an "asshole". "There was a physical vulnerability that Judy had that she never understood how she could be so intimidating to people," says Heder. "She was like, 'I’m invisible. How could you be intimidated by me? How could you feel overwhelmed by me?' And that was really interesting; that contradiction of the way that she felt small and not any kind of threat, on the one hand, and then the other hand, people were like, 'I was more afraid of Judy than I was of the FBI!'"

Cast opposite Madeley is Mark Ruffalo, known to millions as Dr. Bruce Banner / Hulk in the Marvel Cinematic Universe. Here, he plays Califano, who becomes the target of the unrelenting Heumann. "The first time I met with Mark, he was like, 'This guy is not the villain. This guy is in an impossible situation,'" notes Heder. Fully aware that signing off Section 504 will cost millions of dollars – partly to make federal buildings across the United States fully accessible to disabled people – Califano was fearful that agreeing to it would cost him his job.

"Califano had an incredible civil rights track record," Heder adds. "He had worked with LBJ [36^th U.S. President, Lyndon B Johnson] He worked on desegregation. He had fought to protect the Selma march, and in this case, he was tasked with cutting the budget." But this was different. "He looked at this as the stain on his career, this moment where he had to be the villain in the situation. And so I think that empathy for your villain is really important."

In Heder's eyes, this is why Being Heumann is relevant to the times we live in. "We’re talking to the person who's caught in a bureaucracy who knows what the right thing to do is but is too fearful to act, and that's a lot of people right now, particularly in the US," she says. "We've got the moustache-twirly villains. We've also got a lot of people who probably have a good moral code and yet are not speaking truth to power, are not standing up, are not taking action because they're afraid." The radical spirit of the Seventies – and of Judy Heumann – is something "we could learn from right now in terms of what it actually takes to move the needle."

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