Simon Fitzmaurice: Triumph of strong human will and determination

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When we were at Zlín Film Festival, there was screening of a film called “ My name is Emily” directed by Simon Fitzmaurice. Probably it wouldn´t be anything special in flood of other films but we read that this director suffers from MND and directed his film only by using his eyes for communication. Immediately it raised our interest so we asked organizers for contact. They were sympathetic and duly obliged. Then it went pretty smoothly. Mr.Jerry Li from Visit Films put us in touch with Mr.Kathryn Kennedy who helped us with interview. Some answers were done by her, some by Simon Fitzmaurice himself. We didn´t expect it would go so smoothly and fast and thank all concerned for their effort and help.

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Simon Fitzmaurice is talented film director. He says he loved film since his dad took him to see a movie called “ The Cat from Outer Space” He started to write at the age of 14 and was influenced by directors such as Terence Malick, Wim Wenders or Peter Weir. He himself directed e.g. “ The Sound of People” and “ Full Circle” and got awards under his belt. Films were showed on such prestigious festivals as Sundance Film Festival. In fact it was upon return from this festival in summer 2008 when he felt something is going wrong in his body. He was diagnosed with Motor Neurone Disease(MND).He had to use ventilator to be able to breath and doctors basically told family to let him die. But Simon refused to grant permission for that despite the fact that MND affected his speaking, walking, breathing, swallowing and general movement. After four months battle Simon returned home in March 2011 and got full time home care. Incredible at that very time, they decided to have another baby to their three offsprings. Nine months later they turned out to be twins. Simon breaths through ventilator and is fed through a peg tube but it doesn´t put him off constant work. Despite his illness he completed the script for his film “My name is Emily”, which he started to write by his hands. Simon started directing from his wheelchair using eye device to communicate with his crew. He became first ever man to direct film that way. Film received crucial help from Irish Film Board but when additional money was needed, the late Alan Rickman lent his support to a crowdfunding campaign which helped to get film into production. Contributions and donation were sent for various people from all over the world and included also stars like Colin Farrell or Sam Neill. Film was showed in various festivals and received positive response. To us, just making film the way Simon did is an extraordinary achievement in itself and he pushed the boundaries bit further. With his determination he shows that for some people only sky is the limit. We take off our hat to Simon Fitzmaurice, he is true fighter.

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How does it work technically, when Simon can only move his eyes? Are they somehow focused at a censor in computer, so say, one wink means “ A” two winks mean” B”, three winks mean “ 3x” etc? Was that device in use long time before and Simon just applied for that or it was made specially for him?

Simon uses an ‘Eye Gaze’ computer which is manufactured through Tobii Dynavox and supplied to Simon through the Irish Motor Neuron Disease Association. Many people live and communicate with these screens, Simon is not a special case. There is a sensor under the screen which tracks every movement of his eyes. On the screen, this movement acts like a computer ‘mouse’, and wherever Simon concentrates his gaze, it ‘clicks’. There is an option to have the ‘click’ in tandem with a ‘wink’, but Simon prefers to stare and click.

To start writing script by hand and finish it only by eyes must have been pretty different experience. How long did he have to learn to use his new technology and do you think it can fully express his feeling he wanted to incorporate into story?

(from Simon) It does take time to adjust to using a computer solely with your eyes. I have been using the system for six years and so it's second nature to me now and there is nothing I can not do with writing on a computer.

Simon was treated as every Director, he did his job the same way as everybody

Obviously he wanted to make a film no matter what, which is unreal. Did he require the crew treat him as healthy director or they were instructed and were tolerable and stuck together to make it easier for him?

Simon was treated the same as every Director, and he did his job the same way, answering all questions and emails and providing creative briefs. The crew had to get used to working a little differently, in that answers from Simon would be slower then usual. The fastest way to get an answer would be to talk to Simon in person rather then email, and frame the question so it would have either a ‘yes’ or ‘no’ answer, in that way Simon could blink for ‘yes’ and stare for “no”. Simon also had a wonderful Support Director, Liz Gill, who helped with communication from prep to post production, they developed a shorthand and Liz would relay Simon’s wishes to the crew. It was a very unique set up but Simon worked just as hard, if not more so, then any other director and the crew treated him the same.

Do you think his film a) made him forget about serious state

                                     b) was like an example for similarly ill people that anything is possible with strong will

                                     c) pushed boundaries of filmmaking into another level

A/ (from Simon) Directing this film focused my whole self on the work of each day, so it absolutely turned my mind to what I can achieve rather than what I can not.

b) Yes it was a remarkable achievement and we hope Simon’s work will inspire people in all walks of life.

c) From our knowledge, no other film has ever been directed completely through Eye Gaze technology by a physically incapacitated person. It was unprecedented and as such, Simon has certainly pushed the boundaries of what is possible in film making.

We don´t know how film “ My name is Emily” was accepted by critics and public but do you think that even if it wasn´t the best film made with the best story he would have got favorable reports because of the conditions under which he made it, which is more remarkable than anything else?

When promoting the film it is too tricky to talk both about My Name is Emily and Simon’s condition together, because the audience gets confused and wonder if the film is a documentary. So, many critics and audience-goers had no knowledge of Simon’s condition prior to watching the film. From our experience, critics have judged the film on its own merit in terms of the wonderful script writing, the acting, the cinematography, the film as a piece of art, and Simon’s condition has not impacted on that.

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He wrote his book which is again incredible. Was it made the same way as filming? Do you think his only healthy organ he can make contact with-eyes- can soon get overused and fail to work, too? Is he first ever author who actually “ winked” his book and not “ wrote” it

Yes, Simon’s book was written through Eye Gaze technology. It is difficult to know for sure, but there is every chance Simon’s eyes will remain healthy. Simon is not the first person to write a book through his eye, another book ‘The Diving Bell and the Butterfly’ was also written like this.

Obviously seeing a man who is heavily disabled, has to be fed and breath through ventilator can be heart- breaking experience which can affect people. How did the actors take it? Was it hard for them or on contrary they worked their socks off to make Simon happy?

Everyone who worked on the film knew about Simon’s condition before meeting him, so they were fully prepared. Communication takes a bit of getting used to, but everyone on the cast and crew worked really hard, there was a different feeling on this job for a lot of people, everyone really wanted to make sure it all came together because they could see how hard Simon was working and how much it took for him to come to work every single day.

Simon found extraordinary energy and drive to achieve the film

Things like editing, producing, promoting was done by the team without Simon´s personal involvement or he was present at every step?

Simon was there every step of the way. He found an extraordinary energy and drive, a new lease of life, to achieve the film. We didn’t really know how much he would be able to do at first and we only planned for him to be on set for 4 hours a day. But Simon surprised us all and showed up on day one of filming with the crew at 8am, and kept going through the whole shoot, going home with the crew every night at wrap. It was the same for editing and promoting the film, Simon has been fully involved every step of the way.

Simon Fitzmaurice 2How long did he work on set per day and how long was actual filming? Didn´t you have enough money from Irish Film Fund so you set up crowdfunding campaign or you had enough money to start with, but run out of them, so then campaign was set up?

Simon was on set with the crew every day for the full shooting day, we filmed for 5 weeks. The overall film budget was 2 million, so this is impossible to finance entirely from a single source. The Irish Film Board were our biggest supporter every step of the way, providing financial support and guidance, the film would not have been made without them. We also received funding from BAI, TV3, and the S481 tax break in Ireland, and through our co-Producers in Sweden, Garage Films we accessed Swedish finance from SVT, Film Vast, and finally our co-producers in Norway Paradox Pictures invested in the film also. The crowd funding campaign was launched to fund the specific extra requirements Simon needed to do his job outside of the regular production budget, for example, his Support Director, a special van with monitors for the set, a new Eye Gaze computer, batteries etc.

Was Simon personally at some film festivals showing his film or it is not possible with his state? Does he intend to make another film or it was one-off, ground breaking experience?

Simon has attended 3 festival screenings – his first being the domestic premiere of the film as the opening night from Galway Film Fleadh in Ireland, which was very special because it screened for the first time in a location that Simon and all is family and friends could attend easily. The North American premiere was at Toronto International Film Festival and Simon surprised us all by making the trip to the festival! It was his first time out of the country in 5 years, so it was very exciting. The last festival for the film which Simon attended was Edinburgh Film Festival in June, where he got the boat from Ireland to Scotland. He is hoping to next attend the London Screenwriters Festival this coming September. So again he has pushed all boundaries and expectations. Simon is writing at the moment and hopes to make another film.

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