Achievement of pretty much any sort has value precisely because of the fight that has to be engaged to gain it, to be tough enough to overcome what is thrown at us and to keep on keeping on. Those born with a disability, whether of mobility, hearing, vision, cognitive or a learning disability and those born with, or who fall victim to, complete immobility as a result of neurodegenerative disease, face challenges every day which often only extreme determination can overcome.
There are many causes of complete or almost complete immobility. As we age we are more prone to degenerative conditions, such as arthritis or Alzheimer’s disease, for example, which reduce our ability to interact with the world in their own ways. Somewhat less publicised however is the plight of youngsters and young adults who live with a wide spectrum of immobility every day.
In the UK there are many who live with profound disability and forge a life of creative achievement that sustains and upholds the best of the human spirit. Such is the story of Christy Brown who only had control over his left foot and whose remarkable life as a writer, poet and artist was well told in the celebrated film My Left Foot. When Christy was born in 1932 there were few, if any, charities or organisations to help those born into such circumstances and the medical profession gave parents no hope of their children growing up to accomplish anything of value
Today, there are many more charities, government sponsored organisations and community assisted programmes in place to help. Thanks to the internet dedicated websites and resource forums are readily available. One such is Ableize which has links to a number of sites including theatre companies, dance groups, music therapy, photography, painting, drawing and a mixture of both physical and learning disabled arts groups and activities throughout the UK.
A number of charities are under the umbrellas of international organisations. The International Association of Mouth and Foot Painting Artists (VDMFK) presently has 802 artists in 76 countries and the UK MFPA partnership was formed in 1957 as part of this cooperative. Eric Stegmann, a polio victim who lost the use of his arms grew up in Germany, and built a successful career painting with a brush which he held between his teeth. He formed the VDMFK cooperative with colleagues to make it possible for artists who painted using their mouths or their feet to make a living through their work which, until then, was not possible.
Leanne Beetham, 28, was born with the disease muscle arthrogryposis, which meant her muscles didn’t develop properly. As a young child she learnt to do everything using her mouth and began painting when she was three. Leanne loves painting wildlife, and says her degree in Applied Animal Behaviour helped her understand her subjects better. “My grandma, whom I live with, and my teachers, have always pushed my art. I didn’t think about doing something good, I just enjoyed doing it, and now I’m making a career out of it, which is great,” she says. She gives art demonstrations and talks in schools about the work of people with disabilities. “I’ve never been able to use my hands, so you just adapt. I have personal assistants who help out, but I try to do everything with my mouth. Only your mind stops you doing anything.” She is fundraising for a trip to Africa to paint wildlife. “The only time things are impossible is if you give up.”
In 1983 Londoner Andy Baker lost an arm and suffered paralysis in the other as a result of a motorbike accident. Already an artist, Andy began painting with his mouth after leaving hospital and, encouraged by his early efforts, was determined to continue. Eschewing formal training and driven to improve his technique, he became influenced by Balinese and Indonesian design and spent time living and painting in Bali. Richly naïve and stylised, the creative inspiration for his work, he believes, comes from the unknown and he feels art is about embracing that unknown force.
Throughout the UK a number of art studios are dedicated to helping those with disabilities. Action Space, Shape Arts and Rocket Artists are among those who have these studios. Although lottery funding and university participation in some of the programmes is available, they are dependent almost entirely on donations and volunteers.
Friendship Circle UK joined the international Friendship Circle in 2008 and became an independent charity in 2010. It’s an organisation dedicated to helping those with special needs. In our social, media-savvy world it is difficult to imagine those who are trapped inside a body unable to communicate, whose creative yearnings cannot find an outlet. Friendship helps to support them and to become members of an inclusive community to which they can contribute and support others with their own needs.
UK indie band, The Autistix, play a unique form of experimental rock music with heavy guitar riffs underpinning their classic garage sound, but what makes their achievements unusual is that three of them have autism. Their difficulties with interpersonal relationships made the prospect of playing with other musicians problematical, so they formed their own band in 2010 and continue to create their own brand of rock. Many parents with autistic and developmentally impaired children find that in learning to play any kind of musical instrument offers a medium through which to express themselves and find enriching opportunities to interact with the world around them. The results speak for themselves. Playing music has been shown to increase attention and improve cognitive function, auditory processing and verbal skills.
It’s not surprising that music therapy for depression has been shown to improve mood and mental health. In the jargon of such research, active music-making in the therapeutic frame offers opportunities for new aesthetic, physical and relational experiences.
One doesn’t have to reach for the research however to discover how music and art can enhance and change our lived experience whether we suffer from a disability or not. Art of every type, whether making it or sharing in it connects us to a deeply enriching seam of vitality that can repair the disconnected self. Fortunately it’s not an arcane mystery that when we open up the windows through which we sense ourselves and the world around us, the world expands and our experience of it and of ourselves expands at the same time.
Simon Hatchard-Parr M.A practices as a healer and therapist in North London.
For information visit: www.sanctushealing.com