‘In one scene Celine Dion is dancing. Then she lies on a stretcher’: the making of the film about the singer’s tragic condition

IRene Taylor has traveled the world telling stories about sex abuse scandals and oil spills, staunch conservationists and blind Nepalese farmers trying to regain their sight. The Portland-based filmmaker isn’t someone you’d normally associate with celebrity-obsessed mainstream America. But a decidedly gentler environment provides the backdrop for her latest project: a documentary about Canadian pop singer Celine Dion and her struggle to cope with a rare neurological condition called Stiff Person Syndrome (SPS). The film is called I Am: Celine Dion.

Pop documentaries have become an affordable trend in the streaming age, but if there’s anyone who can avoid hagiography, it’s Taylor, who readily admits he knew barely anything about Dion before signing on for the film. “When Titanic came out,” she says of the blockbuster for which Dion provided the theme song, “I was a mountain guide in the Himalayas. I don’t even think I can remember when it came out.” When she was approached to work on the documentary, she adds: “I wasn’t a fan. The Celine I understood was ‘Celine Dion’ – what I knew about her was the low-hanging fruit.”

Now that Taylor and Dion have become friends and collaborators in recent years, that has changed. But it wasn’t a given that the Oscar-nominated director would take on the project when a friend first asked her what she thought of Dion during the pandemic. “I really didn’t think I wanted to make a movie about a celebrity. I was very concerned about artifice, that I wouldn’t be able to penetrate the barrier of excessive production. Even in today’s world you can have Instagram and it should feel personal, talking directly to your fans, but it’s so obvious that you’re not writing your own posts.

But within the first hour of speaking to Dion via Zoom, Taylor’s doubts disappeared. The pair talked openly, without pretenses. Dion took great interest in the parts of Taylor’s house that she could make out and in the trees that were visible through a window. “She’s really quite open – she wasn’t just disarming, she was disarming. Her shoulders dropped. It became clear that I could let down my guard and say to myself, “You’re actually talking to a fellow woman, a fellow mother, someone who loves trees just like you.”

Taylor didn’t set out to “become a puppet director and have someone else tell 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 produced a film that is intimate and sometimes uncomfortably raw. After the pandemic, Taylor and two crew members made trips to Dion’s Las Vegas home to film her as she dealt with mysterious body spasms that limited her vocal range and made performing impossible.

The film is largely set in the singer’s home, where she visits doctors, spends time with her teenage children and plays with her pampered Labrador. There are no talking heads and little archive footage of concerts. Taylor explains: “Celine said, ‘I want to ask you one thing: Is it possible that this movie isn’t about other people talking about me? Could it just be a movie where I’m the only voice?’ I was like, ‘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 on 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, a researched Dion’s career and why critics are so dismissive of artists like her, and was charmed by the writer’s genuine awareness of Dion’s importance as a cultural force.

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

Did she have journalistic concerns about sleeping with Sony and Feeling, not to mention being so won over by Dion? “I couldn’t have asked for better partners,” Taylor says. “Sony didn’t touch me until I showed them a rough cut, and we barely changed the film at all.” Sony executive Tom Mackay, she says, effectively became one of her closest confidants, offering comfort and support on one of the most difficult days of filming – when Dion suffered a full-body episode of SPS and needed urgent medical attention.

The scene isn’t just devastating. It also offers a reversal of the traditional pop documentary narrative. After trying 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 song. In the next scene, she’s confined to a gurney, crying and unable to speak, as medics try to calm her down over the phone.

The series, Taylor says, reveals the heartbreaking truth about Dion’s life: happiness and the thrill of performing are a major cause of her condition, which at times threatened to kill her. “I don’t look at Celine’s life as a tragedy,” she says. “But there are tragic elements to her illness that most people don’t understand. She sings with so much emotion – and she learns that every time she gets too emotional, the rug is pulled out from under her.” Consequently, the singer has had to curb any elation. “Can you imagine? Having a show, tens of thousands of people waiting for you, and you purposefully downgrade your emotions.

As a documentary filmmaker, Taylor found filming the scene – which lasted forty minutes but was cut to five – traumatic. “It was a horrific personal experience,” she says. “I’ve never been in a situation where I felt like someone was going to die in front of my eyes. My director of photography didn’t back down. He saw that I was trying to be a first responder, with my human response, but if something was going to help her, I wasn’t the person to do it. Her doctor was on the phone, her security guard kept her from falling off the table, and her therapist was there.

“It was profound, how everyone was doing their job – and I realized, ‘I’m doing mine too.’ At that point I had been filming for months. And she had said, ‘Never ask to film anything because if you do, it will ruin it for me.’ She was only semi-conscious. I knew this would be very safe, so I wanted to have the choice to include it in the film. When Taylor showed her the final cut of the film, Dion said: “Don’t cut that scene – if there’s something you can add to it.”

This, Taylor says, 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 ordinary person living her life. She had no intention of censoring herself.”