#DystoniaAroundTheWorld Challenge, Dystonia Around the World Challenge, Short story, Writing journey

Short Story: Old Jax’s Quilt by Kate Kenzie

Short Story: Old Jax’s Quilt by Kate Kenzie

PUBLISHED ON 

September was dystonia awareness month and time for the fundraising challenge, Dystonia Around the World. I promised to write a short story if the target of £100 was reached and here it is. For those at the Enchanted Emporium, it is about the Willow’s grandmother, Old Jax from a small village in the Yorkshire Moors. I hope you enjoy.

If you do, why not make a small donation to Dystonia UK – here. £1 can make a huge difference in providing support and research possibilities into this neurological condition.

Happy reading!

Illustration of a child covered with a quilt on a crescent moon
Image by Oberholster Venita from Pixabay

Old Jax’s Quilt by Kate Kenzie

          Early 1980s   

Hettie didn’t need the fragrance of sweet apple drifting through the open window to tell her something was amiss. Earlier, she’d accidentally snipped an inch from the end off one of her plaits while cutting fabric into squares and now Jenny Ramshaw cursed as she stitched her skirt into the quilt she was making. Aunt Mildred mutterings were also louder than normal. Not that anyone else heard or saw her. Only Hettie had the pleasure of possessing that “special gift”, apart from one other who was now in the village.

Hettie’s needle came free from the thread, fell, and rolled across the wooden floor sloping towards the window. The problem with old ramshackle buildings was nothing stayed where it belonged, with or without spectral help.

“It wasn’t me,” Mildred huffed. Her translucent form joined Hettie as she picked up the needle. “But while we’re here, you may as well look. You know you want to.”

The high street below was quiet. Even the Jack Russell outside the village shop resisted his usual incessant yap. He stood still looking toward the top of the hill, waiting as Hettie was. A circling crow landed on the roof opposite and did the same. A figure appeared on the horizon.

“She won’t come in, you know,” said Jenny recognising the signs of Hettie’s discomfort. “She never does.”

“Aye,” another of the sewing circle agreed. “She’ll pop into Pritchard’s place, pay her bill and be gone.”

“No. Too early for that,” said Clara Turner, the newest and youngest member of the circle. “Pritchard sends the bills out at month’s end. Besides, Old Jax just pops a cheque out for our Larry to collect.”

Roland Pritchard ran the newsagent that vowed to sell everything you ever needed, and Hettie knew he wasn’t the reason for the visit. Not when the thirteen-year-old paper kid, Larry, remained unfazed about cycling up the back lanes to the isolated farm at the edge of the village. Few ventured that way, but there was always one in the younger cohort brave or desperate enough for money to deal with the old crone from Speedwell Cottage.

“Whatever the reason, it’s nowt to do with us, Hettie. If you’re not sewing, you can make us another cuppa. We’re parched.”

With tea now served, Hettie joined the chatting group of women basting the large quilt together. Her ex, Tommy, once complained the sewing circle resembled a coven, but she didn’t take offence. Many members were distant descendants of the witches once scattered across the county by fear centuries before, but any magical abilities in the bloodline were now so diluted they’d become redundant. Unless you counted the occasional blown fuses when they all got together or the faint whispers in the air from seamstresses past. Tommy also said he couldn’t wait to leave this godforsaken place. Now that statement was unfair. Everyone who knew the history of Mexenby knew it was blessed,  just not by the conventional god. Was it Hecate? Or  was it Brigid? This was often up for debate. Only one person knew the answer and now she was coming their way.

The bell tinkled as the shop door flung open. The incoming customer was never one for subtlety and Hettie heard several thuds of feet descending the stairs behind her. No one wanted to miss this encounter and the electricity in the air mirrored their anticipation.

 “Jax,” said Hetty to the stooped woman whose hands were as gnarly as the stick they clasped. Thin and frail, her veneer of vulnerability fooled no one except newcomers or tourists to the village. Everyone knew she was capable of single handily helping sick or lost sheep on the moors and farmed her smallholding alone. Jax never accepted anyone’s help and ignored the villagers as they did her unless a specific need drew them up the lane.

Jax offered a brief nod, but her silvery eyes flashed, warning Hettie not to get too close – not that she wanted to. The pungent lingering whiff of sheep was enough to make her keep her distance. 

The click of the stick’s brass ferrule echoed around the small shop, muffled only by the endless bolts of fabric lining the walls. Hettie couldn’t resist a new design, a new hue and pattern she’d not seen before. Every time a salesman visited with a suitcase full of samples, she was in heaven. Despite Aunt Mildred’s warnings that people didn’t want that “overpriced fancy stuff” when a cheaper synthetic fabric would do, Hettie chose with her heart rather than her head. Yes, some customers wanted budget material, thread to fix clothes or ribbon to add a finishing touch, but others like her wanted more. Under Hettie’s care, the little haberdashery flourished. It lured people countywide to buy fabric for that extra special quilt, a unique pattern or just to be inspired. Forget bibliosmia, fabric had its own legion of fans. The refreshing smell of cotton and starch, combined with the dazzling array of colour, hypnotised visitors. Their clean hands trailed over the rolls of crisp linen, baby soft brushed cotton and silky-smooth satin. The quality and texture urged them to spend.

Hettie studied Jax’s hand tapping her stick, the only sign Hettie could see that the old woman was uncomfortable in her surroundings. Calloused and twisted from years of manual labour, mud encrusted every nail and a tide mark of muck circled each cuff. Jax extended her arm towards a delicate yellow fabric. This was too much. Those hands mustn’t touch Hettie’s wares! If smudged with farmyard dirt, they could never be cleaned, and would have to be discarded in the reject bin at a reduced cost. 

Aunt Mildred screeched in her ear, “Move.”

Hettie shot across the floor, snatched the roll away from danger and held it tight against her chest. 

“Are you looking for anything in particular, Jax?” Hettie smiled despite the thunderous scowl on the old woman’s face. While the huddle of sewers eagerly waited for Jax’s response, Hettie stood her ground. Whatever renowned reputation Jax held, this was Hettie’s shop, and no one caressed her fabric with grubby hands, not even the infamous witch of Mexenby.

Jax leaned back on her staff and scrutinised Hettie. Her skin prickled cold under Jax’s intense stare, but she grasped the fabric tighter and met the gaze head on. To her surprise, Jax blinked, and her shoulders dropped.

“I need fabric. For a girl,” she snapped. “Something pretty. Soft.”

“Something like this? For a dress?” Hettie enquired, knowing the sewing group longed to know more. After decades of hiding on her farm, Jax’s appearance in this shop must mean something. Any juicy titbits to share over coffee were a small ask. 

Jax remained guarded. “A blanket. Something like that.” She pointed to a sample quilt hanging on the wall, a complex interlocking design that took Hettie many evenings and shop hours to complete. 

Hettie’s eyes washed over Jax’s clothes for clues that she would be up to the task which even advanced quilters cursed. Rising from mud splattered boots, heavily darned woollen tights covered Jax’s whippet thin legs, and her thick drab skirt and coat showcased similar repairs. A hotchpotch of patches covered larger areas of damage. Every stitch had only one purpose – to mend. Hettie fought the urge to recoil. The poor child, her poor fabric. Nothing could battle against the crudely jabbed stitches that would be their fate. Quilting required an abundance of patience, creativity, and care. Jax had none of these.

“I’ll make it. Tell me the colours and I’ll make her one,” Hettie offered. Aunt Mildred nodded in agreement. Her customers’ projects were the best advertisement for Hettie’s shop and Jax’s creation must not be allowed to thrive.

Jax’s upper lip quivered with refusal and her eyes pierced Hettie’s. Again, Hettie forced herself not to look away. A migraine threatened along with increased pressure in her head. The shop fell silent, waiting for an answer. If causing a crushing headache to her opponent was Jax’s response to an offer of help, no wonder people avoided her. Hettie debated whether to retract her proposal when Aunt Mildred coughed and broke the silence. Jax broke the eye contact and her eyes flicked to the ghost.

 While rubbing head, Hettie tried to decipher the murmured communication between the two older women. Whatever Mildred was saying, Jax was listening. 

Jax clicked her tongue against her remaining teeth and jabbed the stick to the ground, making everyone jump. “Fine. Mildred trusts you. You do it.”

She reached into her coat pocket and pulled out a battered leather purse. Her swollen fingers counted out several notes and flung them on the counter. With a hasty spin, defiant of her age, Jax flounced out, leaving everyone aghast.

Later, when the shop was shut, Hettie closed her eyes and took stock of the task ahead. All afternoon, the others offered their opinions and ideas. The mystery of who the girl was fuelled their conversation. Was she a relative? The next generational witch? Jax’s son had been disowned years ago when he left the village. Had there been a reunion? Unlikely, everyone decided, so maybe she was a distant cousin? The gossip turned to what the mysterious girl would prefer. Hettie refused to engage. That part was for her and the fabric to decide. 

Hettie scanned the material, caressed those which attracted her and listened to the fabric hum. One by one, she dragged out the bolts she needed. Laying them on the large table in the workroom beside the yellow fabric Jax chose, she allowed her imagination to arrange them into a design devoid of childlike motifs. The colours resembled the sunrise seen over the Moors. The bedspread would be appreciated by a child and later, the woman she would become.

 Hettie measured, and snipped into the night, until, with a yawn, exhaustion set in. She slumped over the table and slept.

A loud knock on the shop door woke her. Stumbling down the rickety stairs, she rubbed her eyes and smoothed down the wayward strands of hair escaping from her plaits. It was too early for customers.

 Larry grinned when she opened the door and leaned on his bike. He didn’t acknowledge her dishevelled appearance but pulled out a tiny package from his fluorescent newspaper bag. Wrapped in crinkled brown paper and bound with twine, he handed it over with discretion worthy of an illicit drug deal.

“Jax said you needed this. Mildred knows what to do.” 

Hettie slipped it into her apron pocket. Larry climbed on his bike and pedalled away. The door was nearly closed when he called over his shoulder.

“She’ll collect it in ten days.”

Ten days. Hettie swallowed hard. Jax expected a quilt to be ready in ten days? There weren’t enough hours in the day for her to do it. She’d have to tell Jax, it was impossible. With no phone at the farm, she’d have to trudge up there and tell her herself. Aunt Mildred appeared at her side and offered a smile. “You can’t do it alone, but this blanket was always one that required a team. It’ll work better that way.”

With a fresh cup of tea in hand, Hettie grabbed her telephone book and made a few calls. 

All across the village, sewing machines whirred as each quilter made the blocks as directed by Hettie. The next day, the true work began. In exchange for copious amounts of tea and biscuits, the Mexenby quilters sat at the large frame and they stitched Jax’s quilt. Chat remained at a minimum as they concentrated on the pattern. Mildred was right. A quilt like this was better made with many hands. Quilts were magical like that. They forged friendships within groups, and love flowed into each stitch, which the recipient felt when they wrapped themselves in the end product. A hug from the community; proof they were seen and not alone. Hettie believed whoever this child was, they’d need it more than most. With Jax’s package still lodged in her pocket, she wasn’t the only one to think this. 

Time progressed, as did the quilt. Stitches indented the material and brought the patterns alive. Did the quilters realise amongst the swirls and curves, they’d sewn several runic motifs into the fabric as instructed by Jax? No one mentioned them, to her relief. Hettie didn’t know the meanings despite, according to Mildred, the motifs being common in older quilts and garments made by those in the village. 

“Just because you think you brought this quilting idea back from your globetrotting to America, generations before you made them here, we just didn’t rave about it,” she’d muttered when Hettie commented about them. Hettie hadn’t dared disagree. She still needed her great aunt’s help.

On the ninth night, the women snipped off their threads and placed their needles into their pincushions for the last time. 

“Well, it’s done, apart from the final strip of binding,” Jennie stated. “Are you sure you don’t want us to stay and help? It’ll be quicker.” She failed to hide her judgement that Hettie was a slow stitcher. 

“No, it’s fine. I can finish up. Thank you all. I’m sure Jax will appreciate it.”

This was met with low chuckles and Jennie shook her head. “Doubt it, love. But the kid might.”

With that, the women left with a murmur of goodnights until only Hettie remained.

Could she do what Jax required? The precise and bizarre instructions from Mildred bore a heavy responsibility. Maybe she could take the unfinished quilt to Jax to let her do the required ritual. A few mismatched, ugly stitches wouldn’t matter, would they? She was the witch, after all.

“Don’t even think about it” A frigid blast cooled Hettie’s shoulder with Mildred’s arrival. “Jax trusts you. Besides, you wouldn’t be the first Henderson to do it on behalf of the witches on the hill.”

Hettie raised her eyebrow. It was the first time she had heard about anything about a connection between her ancestors and the Mexenby witch legend. There was no time to question Mildred now. The last section needed doing. Hettie flung the blind open, flooding the room with moonlight and she unwrapped Jax’s package revealing an old coin, a tiny pouch of herbs, several dried apple seeds from the Speedwell orchard, and a bobbin of thread. Under Aunt Mildred’s guidance, she lit a candle and whispered the words from Jax’s scrawled note.

“Well, you need to say it louder than that, dear,” Mildred interrupted “and say it as if you mean it. Intention sets the magic.”

Hettie took a deep breath and despite feeling ridiculous, repeated the words. Maybe magic was as real as the ghost haunting her shop. It was worth a go. She blew out the candle and passed the needle through the smoke three times before threading it with Jax’s cotton.

She slipped the coin, and pouch of herbs into the embedded secret pocket she’d made earlier in the quilt and added the seeds into the binding. With Jax’s words lingering in the air, Hettie finished the last stiches as dawn broke on the day of the deadline.

Wrapped in brown paper and neatly tied with ribbon, Hettie popped the quilt under the counter for collection, but Jax didn’t come. A week passed and another before news of Jax’s son’s fatal accident sent shockwaves through the village. Jax retreated into further solitude refusing to talk to anyone including Larry. A month went by and then several. After a year Hettie placed the package in a cupboard. Apart from the occasional visit from a spider or two, it lay forgotten for the next four years.

A sweet aroma of apples hung in the air and Hettie’s new electronic till refused to work. She snapped at Mildred whose mutterings made it hard to think. Jennie stomped down the stairs to complain the kettle refused to boil. They looked at each other, aware of a shift in the air.

“Jax” they said together. Jennie stood on guard while Hettie rushed to the cupboard to retrieve the forgotten order.

The bell tinkled above the door when it opened.

It wasn’t Jax.

A young woman in a vibrant pink jumpsuit stepped in clutching the hand of a young girl. Hettie knew before anything was said. The air hummed as the girl hopped from one foot to another. A sprig of Speedwell apple blossom tucked into her golden hair confirmed the thought.

Flashing a huge grin, the girl said, “Grandma says you have a gift for me.”

#DystoniaAroundTheWorld Challenge, All about Books, Dystonia Around the World Challenge, Writing journey, Writing process

Meet The Author: Karl Kiddy

As you are aware September is dystonia awareness month which makes having my next author to meet on my blog more exciting. Karl Kiddy is a writer and dystonia advocate who published Warriors of Dystonia which I’m proud to have my story so far in.

Meet The Author: Karl Kiddy

Photo of author Karl Kiddy
Author Karl Kiddy

A huge welcome, Karl. Please tell us a bit about yourself?

My name is Karl and I am a Welshman living in Belfast, with my two amazing daughters, my wife and a cat named Willow.   I have been an artist since I was a teenager and have dabbled in everything from Pyrography (burning pictures into pieces of wood), to photography, blogging, video editing and production, to writing, and dipping in and out of podcasting.  I’m a heavy metal music fan, as well as having a passion for horror movies and pretty much anything in that genre when it comes to comics and books too.  In my spare time, I as the whole reading and project thing, I am a gamer, and would play a lot of Xbox, I also love cooking and would do just about all of the cooking for myself and my ladies.  I have self-published five books, with Warriors of Dystonia being my most recent book and project.   Only one of my other books have been written under my name, with the rest of them, as well as many of my other projects, being done under a pseudonym due to the shamefully juvenile humour that I use throughout.  About 14 years ago my journey with Dystonia began.

Q. The book released is a compilation of the stories of people with dystonia, what made you decide to raise awareness to this little known condition?

It’s difficult to really narrow this down as I believe that Warriors of Dystonia had been bubbling under the surface for a long time.  Having dystonia myself and knowing that due to very little being known or understood about the disorder I had been plunged into a few scenarios where I struggled and I was left feeling humiliated.  A combination of this and having to say that I had Parkinson’s for people to consider my limitations made me think, “enough is enough.”  I want to be able to live in a world where we can say, “I have dystonia,” and for people outside of our community to have some sort of an idea of what it is that we are talking about.  I knew that there was no way I would be alone with wanting this and so I thought about using one of my favourite mediums, writing! 

So, my goal was to make a book where fellow people who have dystonia can see they are not alone and that they can handover to a person and say, “this is my world!”

Q How easy was it to get people together to share their experiences and bring it all together.

As a whole, it was hard work.  I wanted the book to feel like you were having a conversation with the person or perhaps you were sitting in on a chat that they were having.  No matter what anyone tells you, we are a nosy bunch us humans, and we are naturally very interested in the ins and outs of the lives of others.  I’d originally been thinking of ways of directing the content that was share with me, but I am glad I gave everyone free reign now!
Getting people to share their stories was the easy part.  I won’t go into too much, as I will probably use the same methods again, but it snowballed to a point where I had to close the original submission date three months earlier than I planned.  At that point, I had so many and at that point the book was four hundred pages!  The hard part was the admin behind the scenes.  I needed to set up a form which logged the names and details of everyone who contacted me either sharing their story or offering to share a story.  The editing of the book was difficult.  I had a file which was a mass of various length stories, terms, medications and treatments that I had never heard of and I then had to work out how I was going to compile it.  This was before I even started to then format the thing!

Q. You are an active campaigner to raise awareness of dystonia, how do you fit it in with other aspects of your life?

Anyone who knows me will know that when I have my heart set on something I will do it.  Whether it is work related or a new artistic venture I want to try, if I want to give it a go then nothing will stop me.  Then, once I have set my mind on it, I will invest everything in it.  For as long as I can remember, I have never really slept for long and so I work on Warriors of Dystonia in the early hours of the morning.  It would also be these early hours that I would squeeze in some of my other passions too.  By the time my girls get up for school I have probably already got a few hours of my actually job done, an hour on the Warriors of Dystonia or perhaps I have been out and taken photographs of the lovely sunrise.  As I start my job so early, I often have a bit of time in the afternoons to work on my projects too.  Then there’s the weekends, where I will still be getting up and out of bed at some ungodly hour of the morning!

Q. Lots of stories must have been overwhelming to hear, do you have a support network around you?

Yes, absolutely.  I have to be honest, when I knuckled down and began to really read the stories back-to-back I was struggling at times.  Reading the book is different and there’s a bit of a barrier or distance between the reader and the storyteller. I was interacting directly with every single person in the book.  Many of which we were in back-and-forth correspondence.  Going through the story and knowing that person and talking with them was a very different experience.  However, with that being said, it also made me so proud to be able to do this.  There were a few people who I spoke with who have dystonia so bad that this book was their first opportunity to tell the world what it was that they were battling and dealing with every single day.  The sheer determination was inspiring.

I’ve always been very open with my feelings, so have no problems of just saying, “I am having a crappy day.”  You know, that feeling when you wake in the morning and you think to yourself, “I don’t know why, but it’s going to be one of those days.”  I just warn everyone.  That way, it isn’t a great shock to anyone if I am not my self.

I have a great support network in my wife and daughters.  Just having a cuddle from them or listening to their stories about their little lives is priceless.  I love going for walks, so I would often go for a long walk with my wife and talk at her about whatever it is that is going around in my head at that point.     

Q. Have you found this project has impacted your life more than you expected?

Yes, definitely.  I have made so many new friends and my faith in humanity has been restored thanks to the dystonia community being full to the brim with some of the most lovely and sincere people I have ever had the pleasure of interacting with.  Absolute warriors and so inspirational!  From the very start of working on the book, I was exposed to a whole world of forms of dystonia that I had not only not heard of, but wouldn’t have ever stumbled across if it hadn’t been for the work I was doing.  It showed me that dystonia awareness is not only vitally important outside of the dystonia community, but within it too.   Finally, I guess what I almost selfishly planned to be a one-and-done in regard to this project has lead to me wanting to champion and awareness as much as I can whenever I can.  Warriors of Dystonia continues to grow, and I am proud to have started it.

Q. You are also a self-published author, can you say a bit about this or is it top secret?

Being a complete control freak means that the self-publish route suits me just perfectly.  Whenever I have written a book, the formatting, layout, cover art and pretty much every other aesthetic as well as the writing must look exactly how I want.  There’s a method and plan behind my madness!  The downside is that you discover that writing a book is easy, it’s the getting it out there into the public eye that is difficult.  Although it would be fantastic to see Warriors of Dystonia in books shops, the word Dystonia isn’t something that you just stumble across, so I would expect that most people who are looking for a book about dystonia will stumble across my book when scouring the internet. 

Anyone going down the self published-route needs to be prepared to have a plan of how they will release their masterpiece onto the world, and this needs to begin before the date you plan of unleashing it.  You need to drum up interest, use all of the tools the internet gives you, put yourself out there so that people get to know you and then talk to your audience.  Warriors of Dystonia the book didn’t exist in January 2020, but by the time it was released, everyone who had been following the project knew exactly what it was that I was putting together, when it was coming out and knew a lot about me.  Once the book is released, you must keep up that momentum.  This is where I struggle, because I keep thinking that any time that I am investing in marketing could be time spent writing or working on a new project!

Q. What is your next project?

I have been writing under a pseudonym for many years and my plan is to continue something I started many years ago under that alias.  When it comes to writing, my passion is in surreal, off-the-wall comedy and horror.  As well as that, I have drafted a plan for a podcast that I will be hopefully starting this year, it will be another one-man-show, and will be a mix of reviews, random stories of the week and probably a lot of swearing.

These are regular questions I ask everyone, but you may want to skip some if you don’t want to discuss your other books.

Q. What is your favourite book? 

The Pilo Family Circus and the Skulduggery Pleasant Series.  Pilo Family Circus is one of the most unique horror stories I have ever read.

Q. Who is your favourite author?

Derek Landy, bit that’s because I absolutely love the Skulduggery books.

Q. Is your writing influenced by the books you have read? 

I would say not really.  My writing is a messy amalgamation of influence from films, comics, music, with a splash of books.  One of my biggest influences is life and the characters I meet along the way. 

Q. Where is your favourite place to read or write?

I enjoy reading in my living room with movie soundtracks or instrumental music playing in the background.  If I have music on that has lyrics my brain tends to start drawing me to the music.

Q. When did you begin writing and how did being published come about? 

I have been writing ever since I was a young teen, but I really got into it after I wrote a controversial short story about my secondary school, a killer bear and the carnage that ensued when that bear got to the school.  It was over-the-top, completely inappropriate comedy mixed with horror; a printout of the story started to circulate around my school and I became a legend!  I absolutely loved hearing about how funny people found the story.  Years later, at university, I wrote a series of stories about my life and once again I found it fantastic to see people reading my work in the workshops and laughing.  In 2006 I completed Nanowrimo and at the end of it I put the transcript into a book.  Seeing an actual physical copy of the story in this way made me want to put more out!  I then created my first writing alter ego and haven’t looked back.

Q. If you have a genre you write, how did you begin writing in this style?

I love writing comedy that is mixed with horror, occult and it always tends to be quite surreal and totally unpredictable.  Some of my inspirations would be the unpredictable comedy of Reeves and Mortimer, the surrealness of Monty Python and the crude, horror-tinged shock tactics of League of Gentlemen.  I also love to listen to paranormal and conspiracy podcasts too as they offer a writer such a diverse pallet of characters and stories!

Thank you so much for joining me for a natter and all you do for the dystonia community. More information on Karl’s book follows.

Warriors of Dystonia by Karl Kiddy

Book Cover for Warriors of Dystonia by Karl Kiddy

Blurb

“Dystonia is the third most common movement disorder behind essential tremor and Parkinson’s disease, yet hardly anyone has heard of it. Little is known about the condition or what causes it, but what is certain is that it can affect anyone at any age, at any time, any part of the body and has no cure.  Whether directly having dystonia or caring for someone who has it, Warriors of Dystonia shares the candid, emotional journeys and experiences of people from all over the world whose lives are affected by this chronic neurological condition.”

Warriors of dystonia
Website – https://warriorsofdystonia.wordpress.com/
Facebook – https://www.facebook.com/WarriorsOfDystonia/
Instagram – https://www.instagram.com/warriors.of.dystonia/
YouTube – https://www.youtube.com/channel/UCEFh6BtXWlE8BYM_T7AC6cw

Purchase book: https://warriorsofdystonia.wordpress.com/

More information about dystonia: https://www.dystonia.org.uk/

Thank you again Karl for joining me and good luck in your next project.

An update on my challenge for Dystonia Around the World, migraines and dystonia attacks have meant I’m slower than normal but I’m now on book 5 of my readathon to raise awareness and fundraise for dystonia UK. I will be updating my page here

Happy reading and writing!

Love

#DystoniaAroundTheWorld Challenge, All about Books, Dystonia Around the World Challenge, Guest post

Guest Post: Cured or Dead by A.G Parker

Like many I was glued to the Paralympics in the last couple of weeks especially the swimming as I followed fellow dystonian, Tully Kearney. What an achievement to get a silver and gold! Channel 4 did a wonderful job at presenting the Paralympic games and it was great to see disabled people in the limelight on mainstream television which was not limited to just those competing which had happened in years previously. I only hope the representation of disabled people continues and not downgraded until the next games. Representation matters. It gives people, who are normally forced into the shadows, a voice, shows them they are not alone and what can be done if given the opportunity but also shows that we are like everyone else with our own stories. Representation is also important in publishing and books. I’m excited to pass over my blog to A.G Parker, author of Twisted Roots, to discuss this further.

Image: graffiti of two people in wheelchairs about to kiss

Guest Post: Cured or Dead by A.G Parker

“If in the first act you see a disabled person, by the end they must be cured or dead.”*

Don’t look at me, that’s what Chekov said.

Ok, he didn’t, but that’s my version of Chekov’s gun, and after eighteen months leaning on escapism – oftentimes being at the mercy of whatever’s on, in stock or wedged in the shelves – I can tell you it sadly rings too true. From romance to science fiction, fantasy to crime, disabled people are rarely anything but plot devices to make an able-bodied protagonist look good/bad/kind/sadistic. Disabled characters aren’t given the nuance or the opportunity to represent the disabled community authentically. Heck, we’re not even given agency or a personality half the time.

And the fact is, we can see all too clearly just by looking at our pandemic statistics how art and popular culture influence life and vice versa. In the UK, 60% of deaths in this pandemic were disabled people†. The mechanism by which this was allowed, even pushed for, goes thus: Society is sold a story, saturated with multiple stories, actually, which depict disabled people as, as a certain government phrased it, eaters – a drain on the precious economy, offering little in the way of contribution. The public, already operating under fear because pandemic, follow the brutal logic that herd immunity and prioritising the economy over disabled lives is the right course of action. Because, despite ¼ of us being disabled, most people absorb the stories they’d fed rather than rely on evidence. Even if they don’t consciously believe it, information shared this way goes in. It’s one of the most vital and effective ways of sharing knowledge. But at the moment stories, along with politicians, aren’t doing us any favours. Internalised ableism – as a result of media, politics, literature, society’s perception of us – was one of the main issues I had with being disabled. Because aren’t we all wheelchair-bound, benefit cheats and scammers? Isn’t our disability as a result of sin? Either that or we’re inspirational.

Ableist storytelling is nothing new. It’s a ripple from decades past which has gathered strength – political manifestos and the media and literature ricocheting off each other – until finally, at the peak of the crescendo, the wave breaks and we’re left with 80,000 (disabled people) dead to a virus, and no-one is even asking for the government to be held accountable.  

So how do we change that? How do we stop disabled people, too, believing the narrative that we are ‘less than’, others. How do we eradicate the deadly ableism?

We have to be represented.

Simply put, we have to change the narrative perpetuated by media, politicians, economists, and fearmongers. We have to push for representation which authentically shows the disabled community as it is. We need protagonists and side-kicks, background characters and entire casts who are disabled.

(We don’t need more disabled villains.)

We need disabled characters whose raison d’être is disability-focused, and we need others whose disability is incidental. And we need to imagine futures where there is equality for disabled people. That mainstream speculative fiction and fantasy haven’t achieved this yet makes me incandescent with rage. You’re literally writing about made up things; if you’ve got a talking dragon or a hat that can see into your soul and choose which school house you belong to, you can damn well envisage a disabled person being a hero. We do not deserve to be side-lined or sideshows.

I won’t list the abundance of ableist nonsense I’ve read, watched or heard in the past two years, but I will say, I read a SFF book about a deadly pandemic where NO DISABLED PEOPLE SURVIVED, but suddenly, fairies appeared. Another book where the MC sampled multiple versions of their life and in none of them were they physically disabled. You can guess how that affected my mental health.

But.

I’ve also read S. L. Huang’s Zero Sum Game, which has a badass disabled character who doesn’t die and even, how dare he, remains steadfastly disabled and badass until the end. No cure or desire for one in sight.

I read apocalyptic fiction where a bunch of disabled people banded together and lived.

I watched Ryan O’Connell’s Special and loved it.

I read Stephen Lightbown’s The Last Custodian. (And cried.)

I watched disabled burlesque performers.

Saw a disabled stand-up act.

Read books with protagonists working through mental health crises.

Attended an exhibition about eugenics put together by disability activists.

Connected with other disabled writers and talked about disability representation in literature and other media, and listened to poetry written by other people in our community. There’s work out there. We just need more of it.

Luckily, somewhere along the course of this pandemic, I remembered I’m a writer. So, in the last year or so, I’ve written and performed spoken word about disability, queerness and politics. I’m 40,000 words into a SFF where two of the main characters are disabled. I’ve written essays and articles and been interviewed by the FT about disability. In short, I’m being LOUD. Because that’s what our community deserves – more authentic voices telling our own stories, reminding the non-/not yet-disabled people that we are just like them. Deserving of life, and all the wonders of creation.

Author Biography

A.G Parker

A. G. Parker is a London-based writer, editor, and Best of the Net nominated poet. Their debut dark fantasy novel, Twisted Roots is now available to buy, and their poetry, fiction, and essays have been featured in various publications, including Mslexia, The F-Word, Elevator Stories, The Feminist Library, Prismatica, Ogma, Sufi Journal, Sage Cigarettes, Earth Pathways, and more. Their craft essay about disability representation in fiction features in Human/Kind Press‘ anthology Musing the Margins. They are the English Language Editor for Angeprangert! and a staff reader at Prismatica Magazine. They run mindful writing workshops that encourage people to explore and develop a connection with Self through creativity; Sacred Anarchy will run from September 2021. As a pansexual, genderqueer and disabled writer, they hope their work offers readers an inclusive perspective. Will read your tarot for a price.

Purchase link for Twisted Roots

Instagram @a_g_parker

Twitter @amara_gparker

Website amaragparker.wixsite.com/agparker

Book cover: Twisted Roots by A.G Parker

Thank you for popping by A.G Parker and can’t wait to catch up with your book, Twisted Roots which I have been recommended to more than once.

Happy writing and I’d love to know your favourite book with disabled characters. Please comment below.

Love

P.S Currently reading book 5 on my reading challenge for #DystoniaAroundTheWorld challenge. More info can be found here.

#DystoniaAroundTheWorld Challenge, Dystonia Around the World Challenge, Just life, Writing journey

How did August get here so fast? A catch-up and Dystonia Around the World

How is it August already? This year is galloping by and I feel I’m still stuck in March with a never-ending to do list and a WIP which is going slower than a garden snail despite my best efforts. Unlike last year when everyone was in lockdown and zoom calls to boost morale and word counts were the norm, being ‘good’ as a clinically vulnerable person is much harder and soul destroying. The world carries on outside and it’s hard not to feel left behind, trapped and bored. Even my imagination has got fed up with my sense of gloom and decided to scarper  – not ideal when have a deadline to meet. Yes, you heard someone wants to read my WIP about ballet and friendship when finished. Time for a happy dance followed by a frenzied panic. How do authors write under pressure without sobbing in a corner with their inner critic shouting at them? Answers in the comments below, please.

The last couple of months have ground productivity to a halt with the unexpected death of Randall, the inspiration of many stories and dear friend, and umpteen other things life has colluded to throw at me at once. But it’s time to turn things around, take back control, get some writing done, wake up my brain cells, and encourage seeds of ideas and my word count to grow. To start living again. Accountability is key so the arrival of the Dystonia Around the World challenge email was perfect. I’ve signed up and ready to go with a new pen, paper and walking shoes.

Dystonia Around the World Challenge

Dystonia is a neurological condition affecting in the UK and can range from focal dystonias affecting one part of the body and linked to a certain activity, such as writer’s cramp or musical dystonia, to more general ones affecting many areas. All types create challenges throughout the day. After living with dystonia for over twenty years, the charity Dystonia UK is dear to me and supported me often. Last year I wrote several short stories but now it’s time to convert chapters of my WIP, catching up with my overflowing TBR and increase my dwindling mobility into miles. Every 10 minutes of activity equals a mile. The hope is as a collective everyone who signs up will manage to walk around the world.

Let the globe trotting adventure begin.

I’ve signed up for the #DystoniaAroundTheWorld challenge

More information can be found here and on my From Under the Duvet blog. Or follow my progress on Instagram. If you would like to sponsor my efforts and help fundraise for Dystonia UK click here.

How have you all been? Are you out and about enjoying the summer weather or still shell-shocked from the last year and struggling to join back into society?

Take care and stay safe!

More soon.

Love