Friday, July 10, 2020

Dyslexia Runs in Families by Karen Downs-Barton

Light slants into the scullery kitchen
where I am looking at pictures in comics.

Tripe is bubbling in a battered saucepan
while in a Pyrex jar an onion cools in white liquor.

Bapo has rocked back on his one good chair,
balanced between floating and falling.

His newspaper is a curtain concealing his face;
he might be sleeping or pretending, like I am.

I look at the smudged lines of old print,
his earthy fingers supporting the pages.

I scan the images of upside-down people,
whose lives his hold has made a turmoil.
Note - Bapo:  Grandfather, colloquial Romani
Biography:  Karen Downs-Barton is a neurodiverse poet from the Roma community. She is a Creative Writing Masters candidate at Bath Spa University, UK where her manuscript explores experiences of a Roma child growing up in the state childcare system. Her work is forthcoming or published in Tears in the Fence, Night Picnic Journal, The High Window, Alyss, The Otolith, The Fem Review, The Goose, The Curly Mind, Persian Sugar in English Tea, amongst others. Find her at:

Friday, July 3, 2020

Q&A: Jake Goldsmith Founder of The Barbellion Prize

The Barbellion Prize is a new book prize for people with chronic, lifelong conditions whose work speaks on the experience of disability or chronic illness. All books submitted must be published in the current year or published later in the year. From the website: "The awarded work can be of any genre in fiction, memoir, biography, poetry, or critical non-fiction from around the world - whether it is in English, in translation, traditionally published, or self-published." The deadline is October 31st. There is no submission fee. You can find more at the website (click here).

I thought I'd ask Jake Goldsmith, the founder, a few questions about the award.
How long did it take you (from concept to execution) to create the prize?

I had always wanted to see a greater representation of illness and of disability in literature, given how weighty and important these subjects are. And history has some great examples of brilliant work from ill writers. Kafka. Nietzsche. Virginia Woolf. But often when we discuss being inclusive and intersectional, we leave disability and the chronically ill off the list. That’s upsetting, we need to be heard a lot more. Representation is still pretty low. That was the concept, then, that I’d been thinking more about since last year.

I wanted better representation and to reward it. It took maybe a couple months before I met one of our trustees, Elizabeth Ferretti, who lives locally to me, and discussed the idea of such a prize for ill and disabled writers, like me, and started to talk about what we’d need to do. It was easy to create a website and Twitter was invaluable for finding people and contacts. It’s surely been much easier to do this in the Internet Age too.

The National Centre for Writing are also playing a part. Elizabeth had contacts there, such as Chris Gribble, and they should be helping us in the future with publicity and possibly hosting events. They also help other book prizes such as the Republic Of Consciousness Prize, for independent publishers. This has all happened in under half a year or so, slowly persevering.

In a few months we had judges and advisors on board and we made accounts for donations. Some of that process was stressful in finding out exactly what to do, whether we are a small charity, etc, but it worked out pretty quickly. We are still having to work things out as we go, and in the future will likely need a lot more help if we become anywhere near vaguely successful. We have support in principle from the MS Trust, and would hope to have further support from others too in the future.

What factors lead you to include books by caretakers as well as chronically ill/disabled writers for the prize? Where do you see caregiving by able-bodied, non-ill folks in the spectrum of disability/sick literature?

Again, disability literature and writing on illness is still thin on the ground, really. Certainly it is not often a mainstream consideration making bestseller lists or being readily discussed as much as it should be. There is a strong sub genre of works written by doctors about working with patients, and cancer memoirs, but it’s still divided in part from other disability lit.

Carers play such an integral part in the lives of many people who are ill. My mother is my primary carer – I’d very literally be dead without her. They play an important part in the life of many disabled and long-term ill people, and often also go unheard. Literature from the perspective of carers - memoirs, poetry, novels, etc - is just as underrepresented. It deserves to be heard and rewarded too, so it felt inconsiderate to exclude it.

How is the judging process going to work?  Will there be volunteer readers before the judges see the finalists, or will the judges read every submission?

We have a main panel of 3 judges, including myself, and a panel of advisors that are also helping to read some of the submissions and help the judges better form their thoughts and opinions. The judges will be the ones with the final say on any longlist, shortlist, and the winner. The advisory panel does not have a direct vote but are there to help diversify opinion and ideas and help with the workload. As well as help with the running of the prize, publicity, and, well, advice. With 3 judges we should not be stuck in any deadlock situations, such as with an even number of judges, but if for some reason the judges cannot decide on one particular winner, I, in an executive role, will be able to make an executive decision.

We are publicly announcing our judges and advisory panel in July, delayed due to Covid-19 swallowing up the news so much.

The submissions are also being lent out to various trusted friends of the judges and advisors to read at their leisure - to help us form our opinions. These people won’t have any voting power on who wins, but are of course helpful for us in finalising a longlist, and then the rest.

Why did you decide to open the prize to self-published books (alongside traditionally published)?

Few prizes do this, notably the Jhalak Prize does. As disabled literature and illness literature is not often attractive to publishers (unless, cynically, it’s the ‘inspiration porn’ kind), many writers often have to resort to self-publishing. Independent publishers are much more likely to accept disability literature than large publishers, it also seems.

Theoretically, a poor housewife from Peru unheard of by anyone could self-publish a work of poetry about their life with MS, and we could discover it and it could win – if it’s good enough of course.

We would also hope than any self-published works that reach a shortlist could be accepted by a publisher if the author so wanted. How much talent and good literature has been slighted due to the lack of money or recognition? This is an even more acute problem for disabled people, so it’s good to help rectify that.

What are your three favourite books on illness/disability?

Barbellion’s ‘The Journal of a Disappointed Man’, obviously. That work is beautiful. The prize is named in homage to Barbellion for a reason.
I love Oliver Sacks, and many of his works. You could take anything from him. ‘On The Move’, his biography, being a good summation. ‘Awakenings’, too.

My favourite authors are people who suffered with illness (TB) but didn’t write explicitly about it. Albert Camus; and Manès Sperber, who also had respiratory problems. What they wrote best about was political and moral injustice. Camus is at his best in his ‘Combat’ articles and essays, a reluctant moral voice, and Sperber wrote wonderfully about historicist dogma overshadowing human needs, in his biographical trilogy ‘All Our Yesterdays’ being especially good. It has always resonated with me considering the injustice I felt and saw against the disabled, and oppressed, and the more general political evils they were describing certainly affected and did not care much for those with illness or disability. Their own health too gave them a perspective on these things that would be harder to access if they were conventionally abled and healthy.

I feel close to them, politically and in spirit. All of us struggling to breathe, as it were.

How important is it (in your opinion) for awards, presses, and other ventures for the disabled/ill community to be run by members of that community?

All our judges have some sort of long term illness or disability. I have Cystic Fibrosis, diabetes, autism, scoliosis, depression, and a host of other conditions.

Our advisors also have disabilities, but some of them are also abled people with knowledge of the publishing and book industry, as well as academic knowledge on disability.

I do not believe it is imperative that all those advocating for disabled and ill representation be disabled themselves. We can have good allies and friends working for us too, obviously. We need their help. Of course, publishing particularly needs to work in better representing, in who it employs or publishes, disabled people as well as underrepresented black, Asian, and other minority ethnic groups. We seem to be living in an acute moment right now where racial injustice and brutality is receiving more reflection. Those issues often also intersect with disability. Many people killed by police in the US are also disabled. Brutality towards disabled people is even worse in countries like Brazil and India. There’s some shocking statistics. In short, better treatment and representation of these groups is truly important.

Friday, June 26, 2020

An Untitled Poem by Pamela Hope

Pamela's note:  This is a piece of a collection in progress, on themes of trauma and deformity.
TW:  Blood and violence


Get out your knife
                Snatch my blade

Press it into this rotting flesh

Check for marbling, watch for green
The content maggots eating me
Your five sharpened edges

Fingers pinching me
Squeezing this raw meat
Ground up and slab
                I mold around your touch
I squeeze through your fingers

Those blades drawing blood

The vulture sniffs me out
                And caws from afar

Look up
                We see
                                Him circle
Biography:  Pamela Hope is a disabled and disfigured creative and thinker.  She has a background in education, organizations, and free-lance writing; and currently works in banking, of all things.  Follow her @PamelaHope3.

Friday, June 19, 2020

(Review) Keep Clear: My Adventures with Asperger’s by Tom Cutler

Image:  The background is white. At the top in big, black letters "Keep Clear" appears.  Below is a road sign of a red triangle with a picture in black and white of a car falling into water from a cliff.  Below the triangle, in smaller black text, the subtitle of the book and the author's name appears.
Note:  I received a copy of this book in order to review it.  The American release is early next month.

Book content warnings:

Alcohol use
Abuse (mentions/brief descriptions)
Dead animals
Suicide (discussion/description)
Racism in others (brief)
Part manual on autism/Asperger's and part memoir, Tom Cutler takes us through his Asperger's diagnosis at age fifty-five and his life events with a newly-acquired lens.  This book has British humor, heartache, and a whole lot of knowledge.  There are few chapters to guide us through, but there are numerous section breaks to make things more manageable.

The descriptions and details are vivid and plentiful.  The author tells you what it feels like to have a panic attack, be near meltdown, have an aversion to touch, and other things some people may never feel.  He goes through the history of autism/Asperger's being recognized as a neurodiversity, some of the famous people throughout history who've had (or were suspected to have) Asperger's Syndrome, and what a diagnosis can mean for people... what it meant for him.

There is discussion on the possible evolutionary advantages of people with Asperger's in the general population, and the author makes the distinction between autistic people (low functioning) and those with Asperger's (high functioning).  I believe people can take whatever label applies to them that feels right, but I have complicated feelings on differentiating any disability or neurodivergence in what seems like an "us versus them" view.

The book discusses the suicide rate for people with Asperger's (nine times higher than neurotypical people).  At one point, while struggling through his early college days and a breakup, Tom (who has type one diabetes) stopped taking his insulin.  His depression was so immense that it cost him two touch-and-go weeks in the hospital.  No one knew how lonely he was.

There are spots of sunshine.  Tom Cutler is a successful humorist with a family.  His depression, a constant visitor throughout his life, loosened its grip once Tom could view his actions (and those of others towards him) through the lens of his diagnosis.  His interest in spinning things, sound effects, and British road signs had an extra dimension once he found out he had Asperger's.

I'd recommend this book to anyone looking to understand autism/Asperger's better, and my lovelies on the spectrum looking for an excellent account of a fellow traveler.

Friday, June 5, 2020

Giveaway: Only Air by Stephen Lightbown

Image:  On a white background, a drawn tree with white bark stands, taking most of the image. On the left side, the limbs are bare. On the right side of the tree, green leaves are being blown by wind. At the top of the cover, the title is in all caps in the same shade of green as the leaves. The poet's name is below in all caps in black.

We are giving away a copy of the poetry collection Only Air by Stephen Lightbown. The entry window starts today (June 5th) and ends on July 30th. Learn more about the book by clicking here (the link goes to Amazon).


1.  This giveaway is only open to people in the 48 contiguous United States because the book is available in physical format only.  (I apologize to readers living outside the eligible area.)

2.  People may enter by leaving a comment on this post, emailing us at or getting in touch with us on Twitter @HandUnPen. Please make it clear what you are contacting us for.

3.  Only one entry per person.

4.  Drawing will be random, and the winner will be notified on July 31st (by 11:59 PM CST) via the method they entered with. So, if the person who won entered via email, they will receive an email... and so on.

5.  No substitutions. Void where prohibited.

Friday, May 22, 2020

Frida Kahlo and Lying Down

When a friend told me Frida Kahlo attended her only solo gallery show in her bed, I had to research it.  I knew Frida created lying down because chronic pain is a blight, but never fancied the possibility of such a bold move.  Many disabled and neurodivergent artists must create lying down at some point in their lives.  But, most of us would never attend something in bed.

"At first it seemed that Kahlo would be too ill to attend, but she sent her richly decorated fourposter bed ahead of her, arrived by ambulance, and was carried into the gallery on a stretcher."

Frida completely embraced her most authentic self in that moment.  Who would go, not only to an event in bed, but elaborately deck out the damn bed?!  There was no passing up her once-in-a-lifetime chance to see something she worked her ass off for, and there was absolutely no timid apology.
I'm one of those chronic-pain crips who is also fat (I know Frida wasn't).  Most of my days are spent in bed.  My studio/writing space/crafting station is a mattress on the floor.

I don't talk about certain aspects of my life much because of judgement.  Most people who find out how I live just assume I'm a "lazy fatty" who ruined her body with "smothering lard".  They didn't see toddler me crying herself to sleep because of back and hip pain in the late 1980's.  They only know what they want to know.

Would I ever be brave enough to attend an award ceremony, reading, or other event lying down?  Doubtful.  Did it change something inside of me to know Frida did?  Definitely.

Wednesday, May 6, 2020

2020 Mentee Applications are Open!

We are open to mentee applications until June 27th!  You can find our application when you click here.  Please check all eligibility requirements.  We have expanded the pool for who can apply to ensure more people benefit from the program.

The list of mentors can be found by clicking here.

There are a few differences in our program this year:  

1.  We have a mentor for teens (me), but I could possibly "roll in" if we get an absolute deluge from 18+ applicants.

2.  Having an advanced degree no longer disqualifies you from applying (there are a few slight restrictions, though).

3.  You may still submit to a mentor if you have one or two traditionally-published books if the genre you're applying to is newer for you.  If you're a journalist just dipping a toe into fiction, you're welcome to apply to a mentor for the genre.  If you wrote story collections but have little experience in poetry, you can pitch to a poetry mentor.  Please be honest about your past publication experience.

As always, please contact me with any questions:
@HandUnPen on Twitter
Or, you can comment on this post.