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.
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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.

Q&A: Taruni Tangirala, EIC of Rèapparition Journal

1.  Why did you start Réapparition Journal?

There is a specific subset of people in our world that has a particular disadvantage in expressing themselves, their difficulties, and their aspirations—namely, those who endure chronic diseases/disabilities. First of all, having a disability/medical disorder in itself is sometimes difficult to discuss without a large amount of shame and embarrassment to lug around. Second, these disorders/disabilities many times inhibit people from pursuing their interests, passions, and hobbies—and creative expression is an incredible way to help heal from that helplessness. Third, many of such disorders deal with sensitive topics that some may find uncomfortable—and writing about them for the world to see is quite unnerving for some. I realized that a creative platform of some sort is necessary to encourage the discussion of topics such as these. Fundamentally, I started Rèapparition Journal to create a safe space for writing that addresses these topics.

2.  How did you come up with the name?

I hope that this journal will help heal—heal the rift in people's minds through writing, and heal the stigmatization that occurs with some of these disorders. Rèapparition is french for reappearance—and I hope this journal will help spark the reappearance of passion and vitality in people.

3.  Tell me a bit about yourself.

I am a student currently residing in Texas who is passionate about using computation to back advocacy in health. Through my advocacy exploits at various non-profits, I have seen how so many uncomfortable topics that are important to our lives are dismissed in conversation purely because they are too sensitive to discuss. Yet, I've also seen how all it takes is one powerful force to tell the world that yes, these issues need to be discussed, and yes, they are important, to bring about a paradigm shift in old-fashioned thinking. In the case of chronic diseases and their effects on people's everyday lives, I hope to contribute to the movement through this journal. My hobbies include writing, playing my ukelele, and photography.

4.  What is your ideal submission?

All I can say at this point (because we are so new) is to be authentic—an ideal submission shines a light on disorders and other relevant topics in a novel manner.

5.  Do you have any pet peeves submitters should know about?

Sometimes the term "sensitive issues" throws people off—we mean sensitive issues as in the prospect of not being able to discuss that you have a certain disorder to people because it is embarrassing and makes people uncomfortable. However, we definitely don't want any gory/beyond PG-13 material—we want this journal to be accessible to youth as well as adults.

Additionally, the goal of the journal is to be positive and spread positivity. We encourage the discussion of difficult situations, yes, but at the end of the piece (whatever it may be), we want our readers to be left on a positive note.

6.  Your guidelines state:  "Anyone who is empathetic to the causes of the journal may submit pieces."  How did you make the decision to include the voices of those who don't have chronic conditions?

Sometimes, the prospect of having a chronic condition hurts just as much for loved ones and other witnesses—therefore, those who are undergoing a condition may not be the only people to have something to say about it. Furthermore, the goal of the journal is to de-stigmatize chronic disease through discussion, and a discussion always has two sides; we want to hear the thoughts of anyone who can help us advance the cause, even if they don't necessarily have a chronic medical condition.

7.  When are the deadlines for your issues (if any)?

For our first issue, April 1st is the current deadline, but it may be extended.

8.  What is your ultimate hope/goal for the magazine?

Ultimately, I hope that this journal becomes a safe place for discussing chronic medical conditions—not despite the fact that they are sometimes sensitive topics, but because of the fact. Eventually, we hope to become more than a journal—we hope to become a movement.

9.  Is there anything else you want submitters or readers to know about you or Réapparition Journal?

We would really appreciate your involvement in advancing our cause—we can only advance our goals with your support!
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Website:  https://www.reapparitionjournal.org
Instagram:  @reapparitionjournal
Facebook:  Rèapparition Journal
Twitter:  @ReapparitionJ

Q&A With Katharine Quarmby (Nottingham Festival of Literature)

Photo of Katharine Quarmby
Credit to Tom Green

You are well-known for your disability advocacy.  How did you come to advocate for disabled people?

There are a number of reasons - as I will say in my speech, I have had chronic migraines myself since I was a teenager, so have quite an intimate knowledge of pain. We also have a rich history of disability within our own family. When one family member suffered (and I use the word consciously) a traumatic brain injury, it become clear during the recovery period that our relative was treated very differently after the injury. I became much more aware of how some people in society view disabled people. That led on to my work on disability hate crime - along with particular cases of that crime where I felt justice was not done. I then wrote my book, Scapegoat: why we are failing disabled people (Portobello, 2011). I also became a co-ordinator of the Disability Hate Crime Network and have served, or continue to serve, on a number of expert committees related to disability. 

What are your favourite books on disability as a topic, theme, written by disabled writers, or starring disabled protagonists?

I think there are some particularly good ones but of course it depends on how one views disability. Do we, for instance, count writers who experienced mental distress? In that case, I would single out Virginia Woolf as one of my favourites. She wrote about war-time traumatic stress, famously, in Mrs Dalloway, for instance. But, crucially, I think she wrote well about the experience of difference in all sorts of ways - sexuality and gender, in Orlando and of course being a woman in many of her books. For me one of the key tests is can you make your writing about difference universal? Does it break down walls? Then there is much of Audre Lorde, who again writes so brilliantly about all forms of difference. Susan Sontag is another key writer, for me. Then there's Hugh Gregory Gallagher, whose books on both the only disabled US President, and then on how disabled people were murdered during the Holocaust, are key texts. But there are so many it's hard to choose. 

You are giving the Keynote Address at The Nottingham Festival of Literature (which runs from the 8th of November through the 13th). How did it come about?

I was asked to do it and gladly agreed as I think this is a crucial time for writers to address certain themes - difference, universality and cultural appropriation.  

Your Keynote (on the 11th of November) is going to focus on portrayals of disability in literature, spanning from the ancient Greeks to modern writers like Jojo Moyes.  That's quite a large amount of time. How did you decide what writers and trends to include?

I drew on some of the research in my first book, Scapegoat, as I think it's important to give a sense of the historical and cultural context in which disability representation sits. I also wanted to look at some modern (and controversial) texts as I think it's important to address current concerns. 

You are also talking about appropriation of disabled culture.  Do you think able-bodied/neurotypical people see disability as its own culture?  Why or why not?  Has the attitude shifted in the past two decades?

I welcome the fact that more writers are including disabled characters in their works. I think it's always important, however, for writers to do their research and be respectful. I think attitudes have shifted - and mostly in a good way, with more disabled people writing, for a start, and some non-disabled writers wanting to write about key themes in disability current affairs.

  

What trends do you see happening in CripLit?  Are they positive?

I welcome CripLit as I feel it asks some very searching questions of both writers and publishers. However, it's important that non-disabled writers do not get the impression that writing about disability is off-limits. Some 83% of people acquire their disability during their lifetime, rather than being born with a disability. Most of us will die, impaired, in one way or another. For me disability, and writing about it, is about humanity itself at a very deep level.

  

In what ways does the publishing industry fail disabled people/writers, in your opinion? Are there ways it is getting things right?

I'm not a publisher so it's hard to say, but it's important that all new writers are encouraged to find 

ways to the marketplace. The test should be whether the writing is good, however.

  

Lately, at least in some countries, there has been a push to include disabled writers in retreats, conferences, etc.  What do you attribute to this push?

I suspect there is a growing awareness that disabled writers are bringing great richness to the mix of diverse voices.  

What role do able-bodied/neurotypical advocates have in the careers of disabled writers?

I think any alliances are good as long as there is respect on either side.  

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Biography:  Katharine Quarmby is a writer, journalist and film-maker specialising in social affairs, education, foreign affairs and politics, with an investigative and campaigning edge. She has spent most of her working life as a journalist and has made many films for the BBC, as well as working as a correspondent for The Economist, contributing to British broadsheets, including the Guardian, Sunday Times and the Telegraph. She also freelances regularly for other papers, including a stint providing roving political analysis for The Economist, where she has worked as a Britain correspondent. 

Her first book for adults, Scapegoat: why we are failing disabled people (Portobello Press, 2011), won a prestigious international award, the Ability Media Literature award, in 2011. In 2012 Katharine was shortlisted for the Paul Foot award for campaigning journalism, by the Guardian and Private Eye magazine, for her five years of campaigning against disability hate. Katharine and her fellow volunteer co-ordinators of the Disability Hate Crime Network, were honoured with Radar's Human Rights People of the Year award, for their work on disability hate crime in 2010.

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A Description of the Keynote Speech:

A MESSAGE FROM OVER THE WALL - KATHARINE QUARMBY 

FRIDAY 11 NOV 7-8.30PM

NOTTINGHAM ARTS THEATRE / NG1 3BE

American author and disability advocate Hugh Gregory Gallagher wrote eloquently of the “land of the ‘crippled”, adding, “a great wall surrounds this place, and most of what goes within this wall is unknown to those outside it. What follows is a message from over the wall.” In this address, Katharine Quarmby will explore the canon of literature to look at the characterization of disability, as a message within both mainstream literature and emerging disability literature. For writing about disability – invisible and visible – is a message about humanity itself, and the stories we tell ourselves about what it means to be human, and to live with impairment.

NOTTSFOL.CO.UK  WARNING:  The website to the festival has a lot of red.  Be aware epileptics, migraine sufferers, etc.