‘In one scene, Celine Dion’s dancing. Next, she’s on a gurney’: making the film about the singer’s tragic condition
The star has Stiff Person Syndrome, meaning moments of elation can trigger potentially lethal spasms. We meet the director who captured the singer’s Las Vegas home life – and one shocking attack that almost killed her
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.”
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© Photograph: Amazon