INTRODUCTION

1. I AM BREATHING by Emma Davie(co- director) Produced by Sonja Henrici of Scottish Documentary Institute A feature documentary asking “ How can film communicate the experience of a 34 year old man, paralysed with Motor Neurone Disease ? How can fiction and documentary combine to find a new and original filmic language to tell this story ethically ? How could we as filmmakers empower Neil, the subject of the film, so the story felt like his even though he died 6 months after we started filming ? How could we get this film out to a large audience all over the world to raise awareness of this disease ? ” †

2. INTRODUCTION I AM BREATHING by Emma Davie ( director) • I am Breathing explores how the language of documentary film can relate the experience of a young man paralysed by Motor Neurone Disease. 34 year old Neil Platt had 6 months left to live when he asked us to start filming with him in 2008. • I started to film this in collaboration with fiction film maker Morag Mackinnon I filmed and edited it and was the main director over the period but the process was fuelled by our discussions and questions. We wanted to combine documentary and fiction to find a fresh form which could tell this hard story; to create an original filmmaking language that would make Neil’s "felt" experience be at the centre of the film. • Our task was to make a film " with" not "about" Neil Platt. Underpinning the 4 year process of filming, editing, distributing was the quest to communicate his physical and emotional experience of being "stuck" to a wide audience whilst avoiding the ethically questionable sensationalism such stories can evoke. • The force of Neil’s character and our desire to communicate his experience, led to a large scale feature documentary which has played in festivals all over the world, won awards ,good reviews and will be pivotal in raising awareness of MND through an innovative global screening day on June 21st . • It was commissioned by Film 4, Danish Film Institute, Welcome Trust, DR, YLE, MND Association, Creative Scotland and has been sold to many distributors and broadcasters . INDIEWIRE “Docs to watch” 2013. David D’Arcy. Film critic “ the film is alternately heartbreaking and disarmingly sardonic” . Basil Tsiokos Nov 1th 2012 Indiewire

3. I AM BREATHING by Emma DavieOriginality The film was ethically complex. We had to question the nature of documentary in such circumstances and come up with an approach that empowered Neil so he was not a “ victim” or defined by his suffering. When filming, I wanted to to use the camera to attempt to communicate the ‘haptic” experience of his paralysis - to get under Neil’s skin. I deliberately tried to re-create his subjective experience of the world about him - often in unexpected ways. We also tried to “enter’ both the frustration and determination of his attempts to communicate by using the words he created in his blog (through his voice recognition) to become a motif up on screen. This formed the backbone of narrative, creating both a fragility but also an intense sense of his character. By using his words in his blog to narrate the film as text up on screen,and mixing fiction with documentary to evoke his memories, we created a new filmic language which was genuinely explorative but importantly allowed Neil to be presented in an honest and unsensational way.. By using narrative approaches from fiction, and how to bring us into a character's " world" , we liberated the documentary form from just using " real" footage and inserted imaginary sequences to evoke his inner world. . “the extreme close-ups, the camera positioning ( often filming from Neil’s pov) and the eternal drone of the ventilator, which constantly drowns out other sounds, quite literally suck the viewer into Neil’s world. The film is incredibly personal, yet universal” Joost Daamen IDFA Catalogue

4. “I am Breathing”by Emma Davie Process • We began filming with Neil in 2008. The film for him was a means to raise awareness about Motor Neurone Disease. Neil had a genetic form of the illness and was scared his son would inherit it . He felt communicating about it , could help raise the funding for crucial research. • His need to speak pushed the film to become more ambitious. We realised it wasn’t just a story about MND but about a man looking at the big questions of life at this charged time . • Neil died 6 months after we started filming. We started to piece together his blog which would enable us to form a narrative mingling the material we shot with this • We pitched the film at the Scottish Pitch in Edinburgh to funders and broadcasters from all over the world in June 2008 . It generated interest and won Best Pitch and we got development funding from The Welcome Trust and Creative Scotland. We were invited to pitch the film in Docs Lisbon ( 2009) and Nordic Panorama ( 2010) as well as Sheffield Meetmarket (2011) and managed to engage many funders and broadcasters.Over the next 3 years we edited the material , fllmed new imaginary scenes with collaborators, embedded the story of the science through working with leading scientists such as Prof Chris Shaw from King’s College London who we filmed with twice. • In the development period we worked with Danish editor Janus Billeskov Jensen as a mentor. He has won 2 Oscars for original editing in documentary and fiction e.g. “Burmah VJ” , Billie August’s work etc . His deep questions helped us probe the material further and see how far documentary could go when the motives of the film and edit were to understand- not to entertain. I edited trailers and rough cuts and for a short period we also. Ultimately I finished the film in Copenhagen with Peter Winther from Nov 2011-April 2012 ( Morag stayed in Scotland as had a baby). “ranks among the year;s most powerful films“ Hollywood Reporter

5. “I am Breathing” by Emma DavieRIGOUR The repeated questioning required to address both narrative and ethical issues meant the process was exceptionally rigorous. We also had to be very clear in order to resist being swayed by demands of funders and broadcasters. This rigour continued in the edit itself. We initially edited segments and trailers to explore narrative structure and communicate to funders. The final edit began in 2011 and lasted 5-6 months. It was mainly done in Denmark with the editor Peter Winther and myself. We constantly showed it to other prominent members of the Danish film community including editors and directors. This nvolved booking cinemas and inviting representatives from the Danish Film Institute, other directors and producers to the screenings. (Top directors such as Mikala Krogh, Pernille Groenkjaer,Eva Mulvad, editors such as Camilla Skousen )The questions asked during these screenings challenged our approach. For example, we saw how intense images of his suffering became alienating for an audience and how by leaving more to the imagination, the film became more powerful. We needed to create space for the audience to feel. This fitted in with other explorations I have made into narrative in documentary.( see interview with Jean Perret in DOX “An rreducible Otherness” June 2009) " Very strong film. ...But it's the way the other more abstract, slightly metaphorical material, and the footage reflecting the bits and bobs of an ordinary life made incredibly poignant by the curtain coming down on it, which really lift the film to a whole other level. It certainly belongs on the big screen, since the emotions are universal, and made even more potent by the admirable refusal to let sentiment seep into the proceedings. The final, grainy self-shot material in the hospice is about as powerful a sequence as you could ever hope to see." Trevor Johnstone Sight and Sound 2013

6. “I am Breathing” by Emma DavieIMPACT • The film has played at festivals all over the world. • It opened at the IDFA festival in Amsterdam in November 2012 where it was nominated for Best Feature Documentary. This is the most important festival for documentary in the world and this prize, the most prestigious.Only 16 films from all over the world are nominated for this. (selected out of 3,500 submissions from around the world) The film was shown 5 times in large public screenings which sold out and was also shown in a side fair on video where it was the 4 th most seen film out of 100's. It received great reviews including " one of the year's most moving films" from the Hollywood Reporter.Since then, the film has played at top documentary festivals all over the world, including True False in the States, Hot Docs, DocsBarcelona, DocEdge in New Zealand. It has been chosen to represent best of IDFA in Russia and also Best of Hot Docs in Vancouver and won Best Documentary in River Run Festival; • “an emotional and unsentimental diary about life and • Once we have toured the film to festivals it will play on tv around the world.The film has already broadcasters on board including Film 4, YLE in Finland and DR in Denmark so this will guarantee large audiences.We also have a distributor - DR Sales who will ensure the film is sold internationally and we have edited a one hour version for this purpose. • Simultaneously ,we are developing a website which will have interviews with scientists about cutting edge genetic research and its impact on finding a cure for Motor Neurone Disease. The filmmakers, Emma Davie and Morag MacKinnon with Neil’s widow Louise Platt and producer Sonja Henrici of SDI at IDFA where it was nominated for Best Feature Documentary ( Nov 2012)and below at Hot Docs Docs Festival ( May 2013) in Toronto where it was selected to tour as “ Best of the Festival” . This also launched out distribution with KinoSmith in Canada to cinemas across the country. • WEBSITE

7. I“I am Breathing” by Emma Davie IMPACT We are currently planning Global MND Day with the film reaching global audiences in June 2013 through distribution to selected cinemas , festivals and VOD screenings. We are developing this with the MND Association to have maximum impact on the general public internationally. The take up has been more than we could ever have hoped for. We have over 300 offers to screen the film all over the world ranging from a huge cinema in New York,in China, in Nairobi, to a boat on the Bosphurus, a house in Yorkshire. It has caught the public’s imagination and we have had a 4 page article in the Telegraph and many good reviews from international press. It is our hope by raising this awareness that the film will help the scientific struggle to find a cure. Care givers and groups who work with the terminally ill also want to use the film to help people face this difficult time. Prof Chris Shaw has recently discovered some of the genes responsible for MND. With more funding, other genes could be located. It was always hoped by Neil that by raising awareness of the illness, it would facilitate more funding for research. Chris Shaw will appear on our website, and will participate in a Q and A at Bloomsbury Theatre with me on 21st June discussing recent discoveries which give hope: