By Dr Afsana Elanko
This is my last Showcase for July and what an honour it has been to share your work as writers. As the month draws to an end, I’d like to celebrate a subject close to my heart: the brave individuals who chase their literary passions and guilty pleasures when disability precludes them. Engaging with society, literature, art and pleasurable things is an uphill struggle when faced with adversity. But these courageous individuals, with a little help along the way, are able to turn their lives around. It’s important to stand tall and face situations head-on, even if in our hearts and minds we feel weak. So, a thought from my heart to yours:
Face Your Fears
Face your fears, even if you are not ready, as you will never by truly ready.
Remember: a parent/guardian makes you stand up to walk when you are not ready.
© Dr Afsana Elanko, 2022
I would like to give the floor to a poem which is a literary delight in so many ways. I like its rhythm, words and imagery but, more than this, it’s co-created by a group of eight people who have acquired communication difficulties secondary to some medical condition.
The next poem is a literary delight in so many ways. I like its rhythm, words and imagery, but it is so much more. It is co-created and written by a group of eight people who have acquired communication difficulties secondary to a medical condition. They themselves are very proud of what they have achieved with the help and support of Aphasia Reconnect: a charity which supports and enables people living with aphasia and acquired communication difficulties to build on their experiences and strengths to re-engage with life. It’s rare to see a joint composition in poetry from a group like this, and it’s an honour to include a celebration of their creativity.
I remember matches as a child,
Increasing excitement as we drew closer,
Cohesion of strangers,
All looking forward to the match.
So much depends on the weather,
Sometimes boiling, other times freezing.
Cold, noticing my breath in the air,
Nevertheless, people will sing songs.
Excitement expanding exponentially,
Singing, shouting, exploding sensation.
It’s a goal, celebrations,
Sliding over when they score, we’ve done it!
But what if you don’t like football?
I go for a walk along the beach at the weekend.
With my dog and the sounds of the sea,
A long walk with the air and the smell of the sea.
Sounds, art, mud; Blood, beer and grass,
Passing the ball, sweeping from side to side.
Silently still anticipation,
Suddenly the whistle blows.
Sounds of crowds singing cheers,
Don’t forget the girls, they rule.
They make art simply,
by their dazzling moves.
© A4A Our team, 2021
This work is fully copyrighted but the writers wanted to keep their anonymity so please contact Sally McVicker for more information. You can connect with Sally McVicker and Aphasia Reconnect on Facebook: Aphasiareconnec1, Twitter: @Aphasiareconne1, Instagram: @Aphasiareconnec1, LinkedIn: Sally McVicker and on their website: aphasiareconnect.org
Let’s explore this theme further by looking at pieces from two charities working with people who have disabilities that affect language, helping them reengage with their love for literature, among many other things. The love and passion for literature come alive on the page as you read these pieces, which have had very few edits. When it comes to the voice of the participants, I want you as the reader to hear the writer’s voice. The first is from Rosette Life. Lucinda has included the following:
Literary Passions With Acquired Brain Injury
Photo of the Reading Brain Injury Performance company singing in an opera, Weather The Storm on the Garsington Opera stage. They are singing words they wrote: “We need the strength of the lion to get back to who we are’. © Ben Joseph, July 2021
Rosetta Life is an arts in health innovation charity, leading programmes that drive social and healthcare change. It was founded in 1999, pioneering life story programmes in the hospice movement. The artists were originally inspired by Virginia Woolf’s Moments Of Being; a belief that life is not held in a linear progressive narrative but in moments of being. This practice lends itself to fragments of memories, celebrating imagery in poetry and song.
Since 2010, we have worked almost entirely in the field of stroke and brain injury. Fragmented narratives are particularly appropriate for people living with stroke and brain injury who reconstruct speech through disrupted expression. We celebrate the stories of these communities through a co-created performance arts programme that combines text composition, songwriting, movement, music and performance.
One of our ambassadors, Phil Kingston, recalled: “You pick up a postcard that speaks to you, and then you swap it with another person and discuss it. Another ambassador saw in it the farm he lived on in Kerry, and I saw an artist studio, and this idea became lyrics in our collective song. Many of us who have acquired brain injury now live with communication difficulties (eg, Aphasia), which makes language, communicating and expressing ourselves more difficult.”
The groups are integrated groups of professional artists and people living with the effects of stroke and brain injury. We acknowledge that every stroke or injury is unique and every story is different. We listen to each other’s stories and in the act of listening, we notice the moments that are cherished and meaningful. These orally shared moments are recorded verbatim and set to music. We have worked with one composer in particular, Orlando Gough, who celebrates the musicality of the spoken word and translates a natural musicality in the rhythm of spoken inflections.
Phil commented on the process: “The telling and speaking of my stories to an audience and, in the most recent performance, my dreams as well, has been really empowering. Words have been truly transformative for me and my life before, and especially after, my stroke.”
A critical ethnographer, Jean Harrington, has observed our workshop processes and interviewed the participants in an independent piece of research for Kings College London in 2018. She noted that, for one participant, it is: “Purpose in life, very important – if not, just bed and eat. Richer, fuller life – more worthwhile, self-worth.” These points* indicate that self-esteem may be lacking in stroke survivors’ lives and the benefit that being a stroke ambassador brings. He added: “Life continues,” and now he feels: “There is progression, moving forward, little-by-little.” The sense of ‘progression’ to which this participant refers is an essential key-finding, intrinsically bound up with self-esteem and confidence.
In summary, performance arts practices can enable people to recover confidence in communication. We hope that this ignites a passion for literature, and poetry in particular, and becomes a resource for personal recovery from the trauma of brain injury.
© Lucinda Jarrett, 2023
In this next piece, the participants are given the opportunity to engage with literature and enjoy their love of reading. Within the groups, there are people with a huge wealth of literary talent, from avid readers to those getting back into the love of reading, those learning about literature, and even writers. We hear how they encourage the participants to follow their passions and encourage the users to make choices and get involved.
Plunged Into A Different World
Imagine being plunged into a world where, suddenly, you were unable to read the letter that arrived through your post-box, the newspaper properly, or even to attempt your favourite book. This is the true reality for many people suffering from Aphasia. Aphasia impacts on your ability to comprehend what people say, follow the radio, articulate what you want to say, read a letter, write to a friend, or use numbers. Aphasia and communication difficulties affect each person in different ways and it can be debilitating without the right help and support.
Aphasia ReConnect exists to support and enable people living with aphasia and acquired communication difficulties to build on their experiences and strengths to re-engage with life. We frequently support individuals with form filling, banking, writing letters and offer communication support to enable people to articulate what it is they want.
Between The Lines is one of our many groups that aims to enable people to reconnect with their love of books and reading. Held weekly, we discuss our favourite words, literary brain teasers, and an author of the week with excerpts from their books and occasional video clips to bring it alive. The charity has created a safe space for members to enjoy their passion for literature with their acquired communication difficulties, be it reading, writing or discussions.
The Thrill Of Being A Facilitator At Aphasia Reconnect
I recently became a facilitator and, as well as assisting others and taking more responsibility, I find it very beneficial for further development of my speech. Having had an Ischemic stroke, I have had to piece my life back together, including my love for literature. I understand there are different types of strokes and everybody is affected differently.
I joined Aphasia Reconnect after a referral. I have difficult speech and have made great progress. Sally, her team and my fellow survivors have been very supportive of my condition. I like reading autobiographies and non-fiction books. It’s difficult reading out loud, but great for my speech. You have to push yourself to make any improvement. Between The Lines group is great for my speech, great fun and great for learning new topics. The peer support and encouragement from fellow survivors is a great motivator.
I used to be well-read and often had two books on the go. I was an avid reader and would get through more than 70 books in a year. I read mostly military history. I have read poetry and specifically, war poetry. I used to like Stephen King’s The Dark Tower series. After the stroke, more than a decade ago, you can count the number of books I have read on two hands. This has been devastating for me, but I thank God I can still read. My love for literature has not changed, but my ability to read has changed. You can call it a disability, but I call it a reality.
To get my literary pleasures I have become a group junkie. I enjoy attending the Aphasia Reconnect groups as I am able to read aloud and people give me the time and courtesy. I have even logged into groups in America in order to get my literary pleasures. I can read the slides aloud and get involved in discussions. I joined Rosette Life for the creative pleasure it brings me. I have had to dictate this piece while a fellow survivor typed it for me.
© Sally McVicker, © Eamonn Hayes, © Gareth Jones, 2023
You can connect with Sally McVicker and Aphasia Reconnect on Facebook: Aphasiareconnec1, Twitter: @Aphasiareconne1, Instagram: @Aphasiareconnec1, on LinkedIn: Sally McVicker and via their website: www.aphasiareconnect.org
My Love Of Literature With Aphasia
Pre-stroke, I’d been an avid reader of literature and now, post-stroke, it has been a real challenge to focus on and retain information from new stories. Aphasia Reconnect sessions have given me the chance to learn about new authors, find out about their genres and find positivity after a challenging and life-changing event.
I enjoy the group’s sessions, which are eclectic, as we have a varied group of peoplewho all have different passions in literature. We are all unique, not just with our specific aphasia, but with genres that spark our interests.
I have a real passion for the horror genre, with a smattering of ghost stories from old and new ideas. I don’t try to shock anyone with horrors and ghostly happenings, though. Maybe that is a secret pleasure for me.
I am learning to become more aware of my different abilities now, but I do engage with my literary pleasures. Although challenging, I categorically will not let aphasia cheat me of this passion. Strategies help to make a communication disability more bearable.
Literature passions are not for everyone. I get that. But perhaps we can all find something interesting in a new thing. We all need that inspiration. We all need that spark. Let’s find that spark and the world of literature pleasure is our oyster. Obviously, metaphorically…
© Paul Robb, 2023
A huge thanks to the Write On! team, who worked tirelessly in order to make the reasonable adjustments for some of these writers to be included in this month’s Showcase. I am extremely grateful for their support in allowing different writer voices to be heard.
Title picture Glorious Beautiful Books Givers Of Great Pleasure© Dr Afsana Elanko, 2023
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