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additional needs, british film, creative, down syndrome, down's syndrome, equality, family, film, inclusion, independent, love, music, special needs

Whilst I am not an advocate of the line “everything happens for a reason” I certainly believe that everything thrown at us shapes, moulds and influences who we are – and there is no doubt that life guides us down certain paths and chance meetings in a way that seems too perfect to have been random. It is certainly true of my journey, and writer and filmmaker Duncan Paveling.

Back in the days when I still wore knee high socks and milk was served warm in little glass bottles with blue straws and rich tea biscuits, I had a dear friend Natalie. Whenever I think of her I remember her gorgeous red hair and freckles and a face that was always smiling. There was a tight knit gang of us in my class and, even though we have largely lost touch, our friendships will stay with me forever. I don’t know what it is about “old school friends” but somehow the foundations run deep and nothing ever changes that. At aged 11 Natalie and I went off to different senior schools, seemingly without a care in the world, and set off to new pastures. A couple of decades passed and our paths crossed again, thanks to social media.

It turned out we shared more than just memories. Natalie, like me, has three children and, like me, one of her children has special needs. It sparked a new “virtual” friendship comparing notes on our different, but equally similar, experiences. In time, she told me about a friend and work colleague of her husband’s who was in the midst of writing a film about a young man with Down’s syndrome. I was intrigued, checked out what I could about it and loved what I saw.

For so long, about 7 years to be precise, I have yearned for positive press surrounding Down’s syndrome. I have my own agenda of course, as my son has Down’s syndrome. I was wrongly devastated when he was born as I assumed it was a bad thing. I imagined a lifetime of “difference” and exclusion. When I was growing up, disability was largely something to be pitied and feel awkward about. I can’t remember much representation in films, but what springs to mind is sick and ill children, weak and vulnerable and certainly no heroes. In time I realised my own ignorance as I fell in love with my son and realised it “wasn’t Down’s syndrome”, he just has it – and it is really small part of who he is. Our lives could not be further from that initial bleak vision and I find it frustrating that still the stereotypes exist.

Needless to say, I wanted to find out more, about the film and the motivation behind it, so back in the place we both call home I arranged to meet Duncan. My expectations were high……

……….and I wasn’t disappointed.

My fairly predictable opening question was “why?” and when Duncan responded with a “why not?” I found my inner thoughts thinking “yes, why not? What a ridiculous question, I for one should know better!”

Duncan has always loved film and when he was a teenager had a spell as a voluntary care worker. He was partnered with a boy with learning difficulties and used to take him swimming. He felt a real connection with the boy that stayed with him and, after studying media at college, he went on to become a counsellor at a local school for children with special needs.

In the meantime, a whole host of chance meetings and sliding doors offered Duncan the work experience and contacts that would prove to be invaluable in making his writing a success. Having played cricket for Essex and in Australia for Eastern Suburbs, he became connected with keen cricketer and prolific musician and composer Barrington Pheloung, best known for writing the iconic Inspector Morse score as well as the theme to Dalziel and Pascoe, and he offered Duncan the chance to work for him.

Duncan’s connection and empathy with young adults with learning difficulties, combined with his passion for writing, film and media, inspired him to set about creating something that would help challenge outdated perceptions as well as utilise his work and life experience. He set about writing My Feral Heart and a friend of a friend put him in touch with Jane Gull, the film’s director, a link that proved to be the perfect collaboration – Jane has always pushed boundaries in her film direction and supported “people on the edge of society”. Duncan also called on his friend and colleague, award winning composer Barrington to write a moving and poignant score.

“My Feral Heart is a film about ability not disability” Duncan was quick to explain “The fact that the lead character has Down’s syndrome was never a gimmick, in fact it is pretty much irrelevant. It is really just an interesting story, about a young man who loses his mother and what happens to him next”.

Each of the main characters is fascinating and compelling. Perfectly cast, each brings an equally important dimension and depth to the plot.

Despite all the incredible chance meetings and perfect collaborations, Duncan admits that the whole process has been a labour of love, with the team (Jane Gull – Director & James Rumsey – Producer) raising a large amount of finance privately and through investment from Goldfinch pictures in order to get the film into production. The obvious passion and belief has been the main driving force behind it but Duncan has also been spurred on by the ripple effect the film has had, most notably on Steven, who plays the lead character and has been described as “enchanting” in his role, as well as Steven’s peers from the Mushroom Theatre Company, an inclusive drama group, who play other characters with special needs in the film.

Before being involved in the film Steven did not always appear to have the confidence he does now. Steven and his family have said how landing the role of Luke has totally transformed him socially – to the point of him reportedly saying he doesn’t have Downs syndrome anymore.

Duncan also recounted the alarming tale of the casting. It was an open casting event, auditioning for the 4 lead roles, including Luke the character with Down’s syndrome. Of 1500 people that been put forward for the 4 roles, 70 were there for the role of Luke but only 2 of them had Down’s syndrome. Casting someone with Down’s syndrome in the role was essential – and Steven turned out to be the obvious choice. He is already meeting with great acclaim for his acting, often leaving the production team teary eyed and stunned by his performances.

By the end of our conversation it was impossible for me to be anything other than gripped by Duncan’s deep rooted passion for his film and amazed at his spread of skills from semi-professional cricketer, to counsellor and filmmaker. Add to this his care for, and belief in, those with learning disabilities I was honoured and expecting something pretty special when he offered to show me a teaser for the film.

and…..well…….I was blown away……(and crying in the middle of a public space whilst Seb tucked into another bowl of chips and ketchup at 10am)

A strange mix of emotions, I wasn’t even sure why I was crying. It seemed to burst from nowhere. Pride and happiness of this positive and powerful plot, a tinge of sadness that so many people still cannot see beyond “labels” and assign outdated assumptions to people with Down’s syndrome. Feeling the first hand effect of inclusion, something which undoubtedly inspired the strog and powerful plot. And it was also gratitude that someone had enough belief to write such an incredible story – and make it happen. A story about ability, not disability, whose lead character, the hero, is a young man with Down’s syndrome and it took just one glimpse into those strong yet vulnerable almond eyes to set me off. At a time when we are being bombarded with the “celebration” of non-invasive testing for Down’s and some European countries vowing to eliminate the condition altogether, this film could not be more timely. A film that has the chance to show what it means, and more importantly doesn’t mean, to have Down’s syndrome in the 21st century.

And if that is what this film can do in a matter of minutes, imagine what it can do in its’ entirety…..

Photo: Actor Steven Brandon, who plays Luke, and actor Will Rastall, who plays Pete, taken during the filming of My Feral Heart

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