The phenomenon that is Fionnathan




Seán Kelly interviews a remarkable father and son team from Ireland who created Fionnathan Productions to demonstrate how having Down’s syndrome is not an obstacle to living a rich and fulfilling life.

If you are keen to know what Imelda May loves about her life, or indeed to find out what Sir Kenneth Branagh loves about his, then you need to turn to the YouTube channel of Fionnathan Productions.  Sir Kenneth and Imelda are just two of hundreds of people who have been asked about their lives by Fionn Crombie Angus, who has Down’s syndrome. The resulting films are sharp and engaging, perfect for modern viewers’ busy lives because they rarely last more than a minute or two.

Fionn and his father Jonathan Angus are the heart of Fionnathan Productions. Inbetween the crackling of the Skype link from their home in County Clare in Ireland to mine in London they tell me all about it.

Fionn tells me that the first film was made as a promotional video for a cyclist group called the Tour de Munster. The Tour involves 120 cyclists and raises significant amounts of money for Down Syndrome Ireland although many of the cyclists have no direct contact with any of the people they are raising money for. “We decided we would travel around and interview people with Down’s syndrome.  We wanted to include people who wouldn’t be able to answer many questions.”  Fionn came up with a nice simple question.  “I asked: ‘What do you love about your life?’.” Jonathan had a background in film making so they decided to film the interviews.

Great lives

The cyclists loved the film, a charming portrait of people with Down’s syndrome leading great lives. Fionn tells me one person said they loved playing with their dog, another going surfing.  Others loved cooking and baking, greyhound racing, driving their car and listening to music. The film showed each person answering Fionn’s question and then moved on to shots of the activities. The film was so popular it lead to them being featured first in the local and then the national press, followed by a surprise call from the Saturday Night Show, a popular programme on RTE [Irish TV].  The appearance was a success but one question drew a lot of attention – and some laughter. The host, Brendan O’Connor, asked, “Tell me Fionn, how does it feel to have Down’s syndrome?” Fionn replied, “How does it feel not to have Down’s syndrome Brendan?”  The exchange sparked a lot of discussion in the following days but Jonathan now admits that Brendan O’Connor was in on the planning. “I threw that question to him beforehand. We just really wanted to make the point, to help people see that people with Down’s syndrome are just like everybody else.”

With a raised profile and 1,000 new Facebook followers the day after the show, they decided to continue with the interviews.  Since then they have completed literally hundreds, available on YouTube (look for Fionnathan Presents: What Do You Love? from Fionnathan Productions).  As well as Sir Kenneth and Imelda they have featured musicians like Bill Frisell, Lucinda Williams and  Kristen Hersh as well as the actors Angela Lansbury and the Peaky Blinders star Cillian Murphy. Fionn’s interview with Cillian has had almost 60,000 views.  They have also interviewed both the President of Ireland Michael Higgins and the Taoiseach Enda Kenny, as well as lots of ordinary people from all walks of life. Jonathan says that this question from Fionn really puts people ‘back on their heels’ and they have received some very ‘open-hearted responses’. Fionnathan Productions are now heavily in demand to produce films for many organisations. Their short, focused interviews seem to be a perfect medium for reaching people online.

Fionn’s support is organised via a personal budget. This is still very unusual in Ireland where only a handful of people have such an arrangement. Jonathan says, “I believe that Fionn was the very first person with intellectual disabilities to receive his own support budget.” Ireland’s Health Service Executive is considering it as a pilot project.

When Fionn was finishing secondary school, he and his father went to see what was on offer for his future support. Jonathan says the response they got from the various service directors was not good. “I said: ‘Fionn is interested in music and he’d like to study and extend his violin performance. Is that something he could hope to do with you?’ And they said, ‘No that’s not really something we do.’ Well, how about studying wildlife? They said, ‘We don’t really do that.’  Could he learn about film-making? They said: ‘Well that’s not really something we do but maybe we could fit a bit in as a workshop in a year or two.’  So we said, why don’t you just give us the money?  And they laughed nervously and said, ‘That’s not really how it works.’  But we had done our homework and we told them we knew that their policy documents say they intend to do this and we’re here ready to help them!”

It took a year’s negotiations but in the end Fionn got his personal budget.  He now sits on the government’s Personal Budget Task force which is planning to roll out personal budgets across the country.

To receive the payment they needed to set up a company. Friends and neighbours gathered round to form a committee.  When they needed a name Fionn, who likes playing with words, joined his and his father’s names to make the name ‘Fionnathan Productions’. He says, “We also liked it because Fionnathan sounds a bit like ‘Fear Nothing’.”

The company has just three aims: to help Fionn have a great life, to help other people by sharing their story, and to change the world by removing barriers preventing people from having great lives.

Through an Irish government scheme for disabled employees Fionn’s work is now done as an employee of Fionnathan Productions and attracts a government subsidy. Jonathan says they are the first in Ireland to take advantage of this in tandem with a personal budget to create a person-centred job, and he hopes it will catch on.

One of Fionn’s early dreams was to be ‘the next David Attenborough’. Jonathan says he struggled with this wish. Surely no TV company would ever accept someone with Down’s syndrome presenting mainstream nature programmes?  But, Jonathan says, “I just overcome that. What Fionn is saying is that he loves nature. He loves film making. He loves travelling. He loves connecting with people”.  “And connecting with animals”, Fionn adds. And so they have recently been to East Africa, a dream of Fionn’s since he was small, and also to the Amazon.  Soon after we speak they are off to America where Fionn plans to celebrate his 21st birthday in a Redwood forest.

Fionn has made wildlife presentations at primary schools around the country on such subjects as ‘The mammals of Ireland,’ ‘Dolphins and whales’ and ‘The white-tailed sea-eagle’ and is now recognised as a heritage expert by the Irish government. He and Jonathan also give guest lectures on personal budgets to students on social care and nursing courses.

Both Fionn and Jonathan are also artists. They have had several exhibitions, organised with ‘Heart and Sold’ which represents artists with Down’s syndrome. Fionn has sold a number of excellent portraits and also collaborated with other artists for an art exhibition called ‘Collaborations’. Fionn tells me ,“I worked in wood, in metal, in stone, in textiles and painting”.  They hope to do more collaborative art works on their future travels and have also recently taken on the lease of an art studio which they intend to develop as a community project.

Confidence

“Most of the things we do are very small”, says Jonathan. “Just helping people to have a laugh is something we do frequently. And if people are having small laughs often enough, that can really make a difference.  Fionn is so good for me, Seán. You have heard him say in this hour that he loves me – I hear that just about every hour of the day.” Fionn turns to him and says, “Well, I DO love you my dad, you are a very, very beautiful father.” Fionn says this with such confidence and honesty that it is impossible not to be moved by it.  I tell them that many people share love but it is not often so visible.

There is one more story to tell. Among so many other things Fionn is also a musician. He plays the traditional Irish fiddle. Fionn’s fearlessness has inspired Jonathan to pick up the guitar and they sometimes busk together in Galway or Dublin, although recently Fionn has been heading out to play alone.

Recently Fionn and Jonathan received a letter from a woman who had just given birth to a girl with Down’s syndrome. Her partner was a musician who felt sad because he believed that his daughter would never be able to play music with him. But in Galway one day they found Fionn playing the fiddle. In her letter the mother thanked Fionn for showing them that ‘all things are possible’.

Their website states that “Fionnathan exists to have fun and change the world”.  It looks to me like they are doing just that.