'I Am Breathing': empowering people with Motor Neurone Disease

Summary 

Emma Davie’s feature-length documentary explores the ethics and aesthetics of making a film with, rather than about, a man dying of Motor Neurone Disease.

What was the problem? 

Neil Platt had only six months left to live when he asked Emma Davie and Morag McKinnon in the Scottish Documentary Institute to film with him in 2008. Earlier that year Platt had been diagnosed with Motor Neurone Disease (MND), a degenerative illness that attacks the nerves in the brain and spinal cord. Above all else, Platt wanted to raise awareness of MND. He wished to give voice not only to his own experience but also to others living with the same diagnosis.

I Am Breathing was made ‘with’, rather than ‘about’ Platt. Platt, Davie and McKinnon worked together closely throughout the production process. The filmmakers wanted to demonstrate how such a film collaboration could work to empower Platt. They also hoped the unique style of the film would help viewers to share Platt’s experience.

What did we do? 

The project raised ethical questions about the filmmaking process, and about the relationship between the subject and object in documentary film. Davie wished to experiment with filmic practices to make sure the story came through naturally.

I Am Breathing was an honest portrayal of Neil’s life and final days with MND. Given the intense and intimate nature of documentary-filming, the process began with discussions between Platt, his family, and the film crew. These discussions made sure the film stuck to ethical principles, from filming to distribution.

Danish editor Janus Billeskov Jensen provided mentorship throughout, and the Danish Film Institute provided feedback on drafts. This feedback persuaded the filmmakers to focus less on Platt’s suffering. It also leaves more space in the film to show Platt’s story with empathy.

The filmmakers used quotes and excerpts from Neil’s blog to shape and narrate the story. They also varied camera angles; this ensured the audience views scenes from Neil’s eyes and from the ‘outside’.

Genuinely powerful film-making...an intimate portrait of heartbreaking courage — a haunting and inclusive encounter with...time, experience and mortality
Trevor Johnston, Sight and Sound (July 2013)
What happened next? 

I Am Breathing premiered at the International Documentary Film Amsterdam Festival in 2012. It subsequently screened at festivals in fourteen countries. As part of MND Global Awareness Day on 21 June 2013, the film was shown at 242 screenings in 34 countries organised by people with MND, their relatives and friends, charity workers and activists. Venues included an old cinema in Kosovo, a Taoist temple in Beijing, a nightclub in Tallinn and even a taxi in the Home Counties. Engagement with the film on this day was tracked via social media and the I Am Breathing blog was used to document the events.

I Am Breathing has been nominated for and won numerous awards. It was nominated for Best Documentary at the International Documentary Film Amsterdam Festival; nominated The Best of Hot Docs in Canada, and for Best Documentary at the Tempo Festival, Sweden. It won the Best Documentary Award at the River Run Festival in the USA.

Neil’s wife, Louise Oswald, spoke about the documentary and MND on ITV’s This Morning, which has an audience of nine million viewers.

I Am Breathing was distributed using unusual techniques for documentary including link-ups with charities, most notably with the MND Association (MNDA). It helped the MNDA to reach out to people online. For example, a post on the MNDA’s Facebook page on MND Global Awareness Day (21 June 2013) reached an audience of 68,000, which was a social media record for the organisation. Their website also recorded a 239% increase in visitors that month in comparison to the same time the previous year. Sally Light, Association Chief Executive of the MNDA said: “It [the advertising of the film] was a unique opportunity to reach out to thousands of people with no previous knowledge of the disease … Thanks to the film, the film-makers, and, ultimately Neil and his family for sharing their story, we have spread the word to many thousands of people during our Awareness Month.”

About the researcher(s)

Reader

Research unit

Subject area:
  • Scottish Documentary Institute

Funder(s)

  • Channel 4
  • Creative Scotland
  • Danish Film Institute
  • DR, the Danish Broadcasting Association
  • Motor Neurone Disease Association
  • Nesta
  • Scottish Documentary Institute
  • The Wellcome Trust
  • UK Film Council
  • YLE, The Finnish Broadcasting Association

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