Celine Dion did not want any changes to footage of spasm in film, says director

Celine Dion did not want any changes made to footage of a lengthy spasm which occurred during filming for her new documentary, the director has said.

I Am: Celine Dion, which is available on Prime Video from Tuesday, has an almost 10-minute scene towards the end where the Canadian star has an acute intensification of her rare stiff person syndrome (SPS), which causes progressive muscular inflexibility.

It shows her grunting, appearing to be in pain, while lying on her back in spasm, unable to move. She is attended by medical workers, before recovering and singing.

Director Irene Taylor told the PA news agency she was thinking “should I film it” when Dion went “very quickly” into the attack. She said she decided to continue as the singer, known for her powerful voice, had told her not “to ask permission to film something”.

She added: “So in that first 30 seconds, I was not focused on filming, I was the sound person and my cinematographer was there.

“But there were several people in the room and everyone was doing what they were trained to do to help her, they’d all been given medical training on what to do if this happens.

“So she was in the best hands she could be in. If they needed an extra pair of hands, I would have dropped my microphone and gotten in (to) help them without a doubt. But I did decide to keep filming, knowing that we didn’t have to use it.”

Dion revealed her diagnosis in 2022 and has previously said it that can cause spasms so strong that can break ribs and feel like strangulation of the throat.

Taylor added that Dion said “we can always talk about it later if I’m uncomfortable with it” and “just basically stayed out of the way”.

She also said: “After the episode occurred, and she sang that beautiful song, she left in very high spirits. Believe it or not, she left that location in very high spirits. And she was actually taking care of me.

“She squeezed my hand and she was just about to drive away in the car, she reached her hand out the window. And she said, ‘Don’t worry about what happened’.

“And I think that was her way of saying, if you filmed that you can you know, it’s OK. It’s OK. I don’t know what it looked like. And I thought, yeah, but she doesn’t know what it looks like. Like… she was only semi-conscious. So ultimately, I did edit it into the film.

“And what you see in this final film is exactly what I showed her the first time. She didn’t want me to change it at all.”

Celine Dion on stage in a pink dress
Celine Dion (Yui Mok/PA)

When asked why she thinks Dion grabbed her hand, she replied saying she thought she was “hiding” her emotions.

“In that moment when she reached out and grabbed my hand,” she said. “Maybe I was showing how upset I was, but I was so relieved that she was OK.

“But I was also inspired because she sang and she performed and I had never seen her in concert.

“And I was like this is what it must be like to see Celine in concert.

“Because I was like so overcome with, you know, this like ‘Hell yeah’, like (I felt) emotion (on) me. You know, when she did all of her Celine Dion things, her mannerisms, and so, I really appreciated that.”

Taylor, also known the Oscar-nominated documentary The Final Inch and Beware The Slenderman, said: “I would have never shown it if she didn’t want me to, that’s just the honest truth. It’s too personal.”

Celine Dion dressed up for the Met Gala in 2019
Celine Dion (Jennifer Graylock/PA)

Taylor says that Dion “never asked me how I was editing something”, but explained “it’s fair to say that she set the film on the course it took by wanting to give a lot of herself”.

She said: “I couldn’t have done it without her will, you know the will is very powerful and I think any public figure can decide to let go of this narrative that’s been constructed about them for a long time, because sometimes they don’t even have control of that narrative, it’s like, it becomes a force of its own.”

Directed by Academy Award nominee Taylor, I Am: Celine Dion has been available worldwide on Prime Video from June 25.