#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

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

2021 Happy News: A Story Brought to Life

A post saying good riddance 2020 and welcome 2021 will be along shortly but I have happy news that can’t wait for to edit post and have in depth ponders of what to write. I am going to be published! People will be able to open a book and meet the characters I have created. Eek!

A short story, The Ghost Writer, has been accepted by Cardigan Press for an anthology. I began writing it during the Dystonia Around the World challenge last year and finished with the help of a short story course run by the lovely Myszka at the delightful Foxes Retreat. I’m so happy. I keep reading the acceptance email with a huge grin on my face and know this is how Jo March felt when she got published.

Later this year, I’ll have a physical book on my bookcase containing my story and my name; what better encouragement is there for getting me to continue pursuing this emotional rollercoaster career as a writer. And to think I very nearly did not submit it. The stars must have been aligned and my spell bottle must have been working its magic when I pressed send.

Magical Spell Bottle ready for action

If I am this excited to get a short story accepted, imagine what will happen when I get an agent or publishing deal on a book.

Happy writing!

Stay safe and stay at home if you can

Love