Disability Arts Cymru have introduced me to the amazing Sophie McKeand – the gifted writer, poet, performer who is the current Young People’s Laureate Wales April 2016 – 2018, winner of the Out Spoken award for Innovation in Poetry 2015 and longlisted for the Poetry Society’s National Poetry Competition in 2014.
Writing about the incredible collection of poetry, Rebel Sun, by McKeand, Martha Sprackland [me neither] says:
“This is mythological, musical poetry that not only crosses borders but seems to dismantle them entirely, collapsing time and space, transfiguring and prefiguring the world we live in.”
I have a signed copy and can confirm the books brilliance.
Anyway, Sophie is an admirer of my Tanka work and has encouraged me to try different poetic forms such as the List Poem below. I was fortunate enough to perform a list poem alongside Sophie at the #SaveWILG community awareness day at Set the Bar in February.
This was a resounding success and gave me the belief in my talent that I needed. It also led to further ideas for more poems such as the one written below. Maybe I can perform this in future with Sophie as I think we made a good pairing. Sophie is an esteemed poet in her own right so she probably doesn’t want me hanging around like a bad smell, but I think that I should maybe be looking for a person to complete my double act. I need an Ant for my Dec.
Anyway, here is my latest list poem:
Introduction: Music of this type will be created and performed as a backdrop to the introduction phase of the poem. This will be narrated by a third party.
Friedreich’s ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system. It manifests in initial symptoms of poor coordination such as gait disturbance; it can also lead to scoliosis, heart disease and diabetes, but does not affect cognitive function. The disease is progressive, and ultimately a wheelchair is required for mobility. Its incidence in the general population is roughly 1 in 50,000.
The ataxia of Friedreich’s ataxia results from the degeneration of nervous tissue in the spinal cord, in particular sensory neurons essential (through connections with the cerebellum) for directing muscle movement of the arms and legs. The spinal cord becomes thinner and nerve cells lose some of their myelin sheath (the insulating covering on some nerve cells that helps conduct nerve impulses).
The condition is named after the German physician Nikolaus Friedreich, who first described it in the 1860s.[1]
Symptoms typically begin sometime between the ages of 5 to 15 years, but in Late Onset FA may occur in the 20s or 30s. Symptoms include any combination, but not necessarily all, of the following:
- Muscle weakness in the arms and legs
- Loss of coordination
- Vision impairment
- Hearing impairment
- Slurred speech
- Curvature of the spine (scoliosis)
- High plantar arches (pes cavus deformity of the foot)
- Diabetes
- Heart disorders
It presents before 22 years of age with progressive staggering or stumbling gait and frequent falling. Lower extremities are more severely involved. The symptoms are slow and progressive. Long-term observation shows that many patients reach a plateau in symptoms in the patient’s early adulthood. On average, after 10–15 years with the disease, patients are usually wheelchair bound and require assistance with all activities of daily living.[3]
[The lines in italics throughout the poem are to be spoken by different people dressed in appropriate clothing and illuminated on a dark stage by a spot light]
Living with Ataxia
Is a struggle
Living with Ataxia
Sounds muffled and unclear
Living with Ataxia
Smells of wet denim and shame
Living with Ataxia
Tastes of bitterness
Living with Ataxia
Feels brittle
Living with Ataxia
Wibble wobble, wibble wobble jelly on a plate
Living with Ataxia
Effects everyone around you
Living with Ataxia
Leaves you wondering what might have been
Living with Ataxia
Demands formidable mental strength
Living with Ataxia
Beats being programmed by The Man From Auntie
Living with Ataxia
Could be the best thing that ever happened [discounting Maggie’s demise]
Living with Ataxia
“He’s just lazy and clumsy”
Living with Ataxia
Means wanting what you can’t have
Living with Ataxia
Forbids carnal delights
Living with Ataxia
Limits your liberty
Living with Ataxia
Allows your imagination to run rampant
Living with Ataxia
Prevents the attainment of Aquarian ambitions
Living with Ataxia
“Trampoline legs”
Living with Ataxia
Colours your life
Living with Ataxia
Black, dark grey or midnight blue
Living with Ataxia
Is not all bad [he lied]
Living with Ataxia
Results in a dark sense of humour
Living with Ataxia
Is no laughing matter
Living with Ataxia
“Sorry sir, I forgot my kit”
Living with Ataxia
Adds fuck all
Living with Ataxia
Subtracts hope
Living with Ataxia
Divides friends and family
Living with Ataxia
Multiplies hurdles
Living with Ataxia
“Maybe it’s a trapped nerve”
Living with Ataxia
Confuses small minds
Living with Ataxia
Frustrates
Living with Ataxia
Embarrasses
Living with Ataxia
Teaches you virtues, such as “Good things come to those who wait”
Living with Ataxia
Makes you wonder who the fuck wrote virtues?
Living with Ataxia
“Have you got a licence for that?”
Living with Ataxia
Highlights injustice
Living with Ataxia
Illustrates that beauty isn’t only skin deep [thank God]
Living with Ataxia
Condemns you to a life less ordinary
Living with Ataxia
Contradicts
Living with Ataxia
Imposes barriers around ghostly souls
Living with Ataxia
“Sorry, only genetically perfect people can donate sperm”
Living with Ataxia
Did I mention it’s a struggle?
Living with Ataxia
Underlines inequality
Living with Ataxia
Objectifies the body
Living with Ataxia
Mystifies my mixed up mind
Living with Ataxia
Disqualifies true contenders to the crown
Living with Ataxia
“I charge by the hour hun“
Living with Ataxia
Locks lively minds in dying bodies
Living with Ataxia
Mangles the idea of perfection
Living with Ataxia
Twists the spine
Living with Ataxia
Causes caustic sorrow
Living with Ataxia
“Fill your pockets chaps. These disabled freaks are easy targets”
Living with Ataxia
Suffocates the soul
Living with Ataxia
Haunts empty shells
Living with Ataxia
Implodes
Living with Ataxia
Crushes everything that’s precious
Living with Ataxia
Guess what? It’s a fucking struggle
