‘In one scene, Celine Dion’s dancing. Next, she’s on a gurney’: making the film about the singer’s tragic condition | Music documentary

Irene Taylor has travelled the world to tell stories about sexual abuse scandals and oil spills, staunch conservationists and blind Nepalese farmers trying to regain their sight. The Portland-based film-maker is not someone you would usually associate with celebrity-obsessed mainstream America. But decidedly cushier environs are the setting for her latest project: a documentary about Canadian pop singer Celine Dion and her struggle to contend with a rare neurological disorder called Stiff Person Syndrome (SPS). The film is called I Am: Celine Dion.

Pop documentaries have become a bankable streaming-era trend, but if there is anyone equipped to avoid hagiography it’s Taylor, who readily admits to knowing hardly anything about Dion before signing on to the film. “When Titanic came out,” she says of the blockbuster Dion provided the theme tune for, “I was a mountain guide in the Himalayas. I don’t even think I remember when it came out.” When she was approached to work on the documentary, she adds, “I was not a fan. The Celine I understood was ‘Celine Dion’ – what I knew of her was the lowest-hanging fruit.”

In the past few years, as Taylor and Dion have become friends and collaborators, that’s changed. But it was not a given that the Oscar-nominated director would take on the project when she was first asked by a friend, during the pandemic, what she thought of Dion. “I really didn’t think I wanted to make a film about a celebrity. I was very concerned about artifice, that I wouldn’t be able to penetrate that barrier of being overly produced. Even in today’s world, you can have Instagram and it’s supposed to feel personal, talking directly to your fans, yet it’s so obvious you’re not writing your own posts.”

Within the first hour of speaking to Dion via Zoom, though, Taylor’s doubts evaporated. The pair chatted openly, without pretence. Dion took great interest in the parts of Taylor’s home she could make out and the trees visible through a window. “She is really pretty open – she was not only disarming, she was disarmed. Her shoulders went down. It became clear I could let my guard down and say to myself, ‘You’re actually talking to a fellow woman, a fellow mother, a person who likes trees like you do.’”

Taylor had no intention of being “a puppet director, with someone else telling me how to make the movie”. Yet her close collaboration with Dion – and Dion’s company Feeling Productions, and her record label Sony Music – has yielded a film that is intimate and sometimes uncomfortably raw. After the pandemic, Taylor and two crew members made trips to Dion’s home in Las Vegas to film her as she dealt with mysterious body spasms that throttled her vocal range and made performing impossible.

The film largely unfolds in the singer’s home, as she sees doctors, spends time with her teenage children, and plays with her pampered labrador. There are no talking heads and little archive concert footage. Taylor explains: “Celine said, ‘I want to ask one thing of you: is it possible that this film isn’t about other people talking about me? Could it just be a film where I’m the only voice?’ I was thinking, ‘Are you kidding me? That’s my fantasy.’”

Taylor’s preparation was minimal. As a “voracious New Yorker reader”, she looked up Dion’s name in the magazine’s app and saw an article about Carl Wilson’s 2007 book Let’s Talk About Love: A Journey to the End of Taste. She read Wilson’s book, an investigation into Dion’s career and why critics are so dismissive of artists like her, and was charmed by the writer’s earnest awakening to Dion’s importance as a cultural force.

“I don’t want to put words into Carl Wilson’s mouth,” says Taylor. “But the way I understand it, he was saying, ‘Mea culpa. I thought she was this and now I think differently.’ That is also where I met her: I don’t love your music. In fact, some of her songs, I would probably change the radio station. But when I got to know her, it was like, ‘Yeah, this is what Wilson was talking about. She’s very kind and genuine. The people who are fans, who bother to go down the rabbit hole – that’s really what they’re drawn to.”

Did she have any journalistic concerns about getting into bed with Sony and Feeling, not to mention being so won over by Dion? “I couldn’t have asked for better partners,” says Taylor. “Sony did not touch me until I showed them a rough cut, and we hardly adjusted the film.” Sony executive Tom Mackay, she says, actually became one of her closest confidants, providing comfort and support on one of the hardest shoot days – when Dion had a full-body SPS episode and needed urgent medical attention.

The scene isn’t just devastating. It also provides a reversal of the traditional pop documentary narrative. After trying and failing to record a new song for the film Love Again, due to her spasming throat muscles, Dion finally hits her notes, and we see her happily dancing and singing along to her new track. In the very next scene, she’s locked up on a gurney, crying and unable to speak, while medics try to soothe her by phone.

The sequence, says Taylor, reveals the gutting truth about Dion’s life: happiness and the exhilaration of performance are a key trigger of her condition, which has at times threatened to kill her. “I don’t think of Celine’s life as a tragedy,” she says. “But there are tragic elements to her disease that most people don’t understand. She sings with so much emotion – and she’s learning that, every time she gets too emotional, the rug gets pulled from under her.” Consequently, the singer has had to start reining in any elation. “Can you imagine? Having a show, tens of thousands of people waiting for you, and you purposefully downgrade your emotions.”

As a documentarian, Taylor found filming the scene – which lasted 40 minutes but was cut down to five – traumatic. “It was a horrifying personal experience,” she says. “I have never been in a situation where I felt like someone might die in front of me. My director of photography did not flinch. He saw I was trying to be a first responder, having my human response, but if anything was going to help her, I was not the person to do it. Her doctor was on the phone, her security guard was making sure she didn’t fall off the table and her therapist was there.

“It was profound, just how everyone did their job – and I realised, ‘I am also doing mine.’ At this point, I’d been filming for months. And she had said, ‘Don’t ever ask if you can film something, because if you do that, it ruins it for me.’ She was only semi-conscious. I knew this would be very safeguarded, so I wanted to have the choice to put it in the film.” When Taylor showed her the final cut of the film, Dion said: “Do not cut that scene down – if anything, you can add to it.”

This, says Taylor, was the beauty of working with Dion through the ups and downs of her illness. “She was so disarmed and so open, willing to look like an everyday person living her life. She was not going to censor herself.”

• I Am: Celine Dion is on Amazon Prime now