Music re-makes what Parkinson’s breaks
In anticipation of my dad’s second album launch, I consider how artists use their creative practice to think through their experience of disability and illness.
Tony on the beach. Jean-Christophe Godet, 2018.
There is a glass table in my father’s studio with some interesting items on display. Dad says they are muse-worthy; that means they inspire and become his muse-the-inspiration that composers need to motivate and energise creativity within themselves. His jumbled furnishings were not quite what the rest of our family had in mind when we viewed what is now our Guernsey home in 2018, attracted to its vast attic space with spectacular views of the surrounding islands. To a stranger, that attic, now my dad’s studio, would likely seem an Aladdin’s cave, teaming with musical memorabilia: recording kit, song books, musical scores plus stamp albums, photographs and a collection of unlikely and often bizarre objects obtained at auctions.
Diagnosed with Parkinson’s Disease in 2009 when I was 11 years old, my father’s response as a musician, teacher and theatre director has been with music. When he could no longer work full-time, my parents relocated to the Channel Islands where Dad continued to make music, creating songs that are a musical road map to his condition. A live response to the intrusive, subversive and ultimately devastating effects of this neurological progressive and incurable disease.
Out My Head. Tony Coffey, 2018. Photography: Jean-Christophe Godet. Design: Mike Chatfield.
Music offers Dad a means to express and communicate the lesser known and misunderstood aspects of the disease and reveal to listeners what it is really like to live with Parkinson’s. All in a vivid and engaging vocabulary of sound that mere words alone cannot encapsulate. Music has an expressive and transportive power that releases my dad from the grasp of PD and takes him to a place Parkinson’s cannot reach. It has served as a powerful resource for our family to connect, communicate and celebrate life, in spite of his illness. This phenomena is what I have sought to explore - how and why artists choose the creative act as a means to think through their encounter with disability and illness, and how their creative practice supports and gives solace to them and their loved ones.
My dad says music is part of the big bang; that the ultimate act of creation still resonates in every particle of the universe. His profound stories and insights into the human condition have captivated me for as long as I can remember. He tells me that moments before the universe was created there was a tiny speck the size of a grain of rice which exploded into the universe - an awe-inspiring, incomprehensible idea for human beings to contemplate. Dad believes every living thing is a continuum of the Big Bang and that is why it stands to reason that music can change mood; that happiness lives in music. In this way the composer is the manifestation of the notion of creation from chaos; someone who creates and shapes sound to express meaning - or simply gives the audience an opportunity to create meaning. When asked about his inspiration, Dad compares it to tuning into a radio or waking up from a dream. He can vividly recall what he was doing when the moment of inspiration arrived, as if there were a bolt of creative energy; a surge of power. “It definitely comes from within but can combust quite violently leaving an imprint on the memory wall” he tells me. His readiness to capture ideas on a dictaphone (he always has one to hand), enabling him to instantly record that fragment of cosmic energy. It is as if music is my dad’s armour against Parkinson’s. “The dark forces of Parkinson’s recruit pains and aches, and curse the temper. Defiled by creation… fighting for positive creativity, and that is why music re-makes what Parkinson’s breaks.” he says. “Facing the future with Parkinson’s is looking at an approaching super storm, but has given me the drive to fire up my imagination, get my muses into shape and face the future with as much music and song as possible.”
On My Mind. Tony Coffey, 2021. Photography: Jean-Christophe Godet. Design: Mike Chatfield.
Back to the studio.
Find me a place beyond the flow of time, states an artwork resembling a backdrop to a village railway platform. A striking, minimalist piece by Ian Ditchburn which takes up the full width of the table. It was a gift to my father from an old friend. Everyman stands at the fence with his back to the viewer - the original inspiration for the front cover of Out My Head. Find me a place beyond the flow of time. At first consideration, an unexpected utterance from a musician. Of course, to operate out of time’s flow, is a release for the musician who is used to the world of strict pulse and beat over which the sounds are patterned according to stylistic practice in the past and present. “A dollop of rubato and a sprinkling of accelerando, and so on, communicates the message and the mood of the composition” Dad would say.
A c1820 hand notated book of hymns and simple polyphony also features on the table. Scribed precisely with great skill in a strict metre with tones that are meant to resonate around the transepts, only to return to ears in "a glorious interwoven sonority that evokes the beauty, awe and majesty of heaven… or at least a Westernised version!” Dad says. The metronome on the end of the table represents the importance of time in relation to musical sound. Time is the canvas and this has been a characteristic of all cultures. Giving shape to sound in terms of time, beat and rhythm, along with the voice, and creating instruments from materials found in nature, have all become the cultural heritage of communities across the world. What is ironic, and significant, is that the bending of time, the rubato, is what gives music ‘life’, makes it human. You become more human by stretching and bending time, building a tapestry of sounds that can express the human experience. Music can reflect the emotional journey, the need for a journey, and the need therefore for music to make the journey. “As Mozart put it, any fool knows you keep a strict pulse in the left hand while the right sings the melody out in rubato” Dad says.
Moving around the studio, the superb view of Sark from the window in inescapable. You can see the whole island and everyday the vista is different, my dad assures me. It is like a framed photograph of a landscape that evokes serenity and awe at nature’s wonder, inspiring my dad to see the ‘bigger picture’, he says. That is what his latest album On My Mind explores - how someone with Parkinson’s disease sees the world in light of their encounters with the darker side of neurological disease. How the unseen symptoms and the side effects of drugs combine to give a heightened sense of the risk to life on this beautiful but fragile planet, from the reckless folly of humanity. It is an example of what someone with a disability or illness has to offer the world not in spite but because of their experience of pain and suffering. A member of the community who has experienced danger and lived to tell the tale has a lot to offer the community by telling the story. Our ancestors were exposed to frequent danger, so learning the lessons from those who were able to live through these experiences was of great value to community and could be life-saving information.
The Dog’s in the Car. Tami Aftab, 2019. Image: Tami Aftab.
My dad is not alone in his ambition to use his craft to explore his lived experience of illness. Photographer Tami Aftab, in her series The Dog’s in the Car, focuses a lens on her father’s short term memory in a tone that is both sensitive and playful. Created in close collaboration with her immediate family, this work demonstrates the power of mixing affection with humour to draw in viewers to consider subject matters that often provoke discomfort.
When introduced to the series in my role on a judging panel for the Guernsey Photography Festival competition, I was drawn to Tami’s story and the parallel between our experiences. Tami’s father, also called Tony, suffers with hydrocephalus - a condition which causes an abnormal build up of cerebral fluid in the ventricles of the brain. Around 25 years ago, he underwent a endoscopic third ventriculostomy to bypass blockages when an internal bleed occurred, permanently causing damage to his short term memory. The title, itself, is a nod to the everyday reality of living with memory loss. As Tami recalls, “the dog’s in the car! Mum shouts from upstairs. My dad, Tony, has been running around the house, in and out of the garden thinking that he has lost Rudi, our dog. This is a common occurrence, where dad drives back from a dog walk, forgets the dog’s in the car, comes in to the house and proceeds to think he has lost him.” Beginning the series while studying BA Photography at London College of Communication, Tami set out to visualise memories and notions of her dad’s way of living with photographs that have a lightness to their core.
Each image is composed with immense attention to detail and yet a lightness of touch. They capture the nuances of a life, known intimately by Tami’s family and which provoke intrigue within the viewer. They build up a broader picture of a person and stay clear of framing illness as something that defines identity or should be pitied. We know that illness strains and complicates life, Tami chooses therefore not to express pain and suffering through her images. Instead, she captures her father’s ability to make light of the dark and we can see Tony living, despite his illness.
In an interview with It’s Nice That, Tami describes her ambition to make sure her photographs “give my dad the confidence he deserves, by seeing himself the way we see him and recognising his strength.” The project is truly collaborative, “whilst my mum and sister aren’t in front of the camera, they are frequently there throughout the image making process” she says. This demonstrates the potential of a project of this kind to function as a form of re-looking at the self and making sense of one’s experience. Similarly, following the launch of my dad’s latest album, my family will listen to the music anew through the ears of a stranger and reconstruct our story with each song. Through sharing his story, my dad can reassess his relationship with Parkinson’s in the language he is best versed - music.
Starfish. Tami Aftab, 2020. Image: Tami Aftab.
If telling the story is key to finding meaning in the madness, then Tami had to make images because she speaks with photography. My dad had to make music because with sound he is able to articulate that which words alone cannot express. As curator, it is my job to draw attention to the possibilities of these crafts. In the hands of the skilled artist they can broaden and enhance our understanding of experiences of disability and illness, and offer healing to those who see themselves within the narrative. In this way, music and art can be understood as a form of resistance against the ignorance, intolerance and misunderstanding felt by those with a disability or illness. Positive creation resisting that which disease and illness takes away; music (and art) re-makes what Parkinson’s breaks.
You can listen to Tony Coffey’s music via all major streaming platforms. Listen via Spotify here.
You can view Tami Aftab’s series The Dog’s in the Car on her website.
