Representation in film is a hot topic at the moment. From equal pay for female actresses to the 'whitewashing' of roles that were originally created by and for actors from other ethnicities, there is much debate and change afoot in popular and social culture.
I've now seen 'My Feral Heart' three times, each time special and unique in their own right. My first viewing was during Norwich film festival in 2017. I was lucky enough to get a ticket for a Q + A with the films writer, Duncan Paveling. A beautiful memory for me from this experience was knowing that within five minutes of the film starting and 'Luke' , played by Steven Brandon (a man who has Down syndrome), appearing on the screen was that I wanted to tell everyone I knew to go and see the film! The film felt like a beautiful companion piece to Sally Philips' Documentary, 'A world without Down syndrome'. Here on screen was the perfect answer/riposte to what the world would be missing out on if we were to continue following down the path of countries such as Iceland, which had seen 100% of Downs syndrome pregnancies terminated.
My second chance to see the film was during Down syndrome awareness week 2017. I had enthused about the film to the support team I was working with at the time and had shown the trailer to the gentleman we provided to support to in the hope he might decide to come along , the gentleman in question also has Down syndrome (and usually only really likes action films). My over-riding memory of the day is of his face when he saw Luke appear on the big screen for the first time; The BIGGEST smile, the WIDEST eyes and a glance over at me, I'm assuming, in recognition of, 'He's like me!!! , 'I DO THAT!!!
Luke is a charming, engaging, humorous and kind individual who, in the early part of the film, is acting as carer for his elderly mother. The film depicts Luke as an independent man who cooks, cleans and shops independently and provides emotional support and warmth to his mother until she sadly passes away and Luke is placed in a residential service.
Many of the questions at the Q+A were from people who had no prior knowledge of learning disability services and voiced surprise and shock that Luke would have to leave home despite showing obvious abilities of self-management. Luke finds support and friendship from a charismatic support worker (Shana Swash) and a young man on community service at the home (Will Rastall) and finds opportunities to demonstrate his worth, his caring nature, his abilities and his compassion for others.
My third viewing was in the comfort of my own home due to being the lucky winner of a dvd copy of the film (thank you Steve Hardy) and as a newly qualified Learning Disability Nurse. Full of excitement, passion and zeal for the role and the opportunities this position provides me to be a voice for, and enabler of the voices of people with a learning disability in wider society. For me, this film is a testament to character, individuality and positive influence that people with a learning disability can and do have on those people they meet, work and live with. This film provided members of the public who were unaware of the options facing people with learning disabilities a chance to learn, reflect and question the actions of those charged with their support , but it also has the ability to provide moments of real joy and celebration for those of us; health professionals, family members and individuals who are already in 'the community'.
The power and significance of having a lead actor with Down syndrome, the first-hand experience of seeing what this representation in media can have for someone with Downs syndrome and their family and friends and the real quality of performance by Steven Brandon make me hopeful for a future where we won't have to ask the question of what a world without Down syndrome will look like.