Just like paralympians, writers with disabilities strive to achieve their goals on a daily basis. Simon Whaley chats to two writers about how disability influences their writing business.
After the spectacle of the Rio de Janeiro Olympic Games comes the Paralympic Games, where athletes with physical disabilities show the world what they’re capable of. Not all disabilities are physical, something Prince Harry focussed on during this year’s recent Invictus Games, but living with a disability creates a range of challenges on a daily basis.
Yet those determined enough will find ways to overcome them, and that’s just as true for writers with disabilities as it is for paralympic sport stars. Having a disability need not prevent you from being a writer, or force you to give up writing, but it might change the way you run your writing business.
Christopher Nolan was born with cerebral palsy and, despite only being able to move his head and eyes, went on to write poetry and novels. His childhood memoir, Under the Eye of the Clock, won the Whitbread Book of the Year Award in 1987.
Meg Kingston, author of The MonSter and the Rainbow: Memoir of a Disability (https://www.amazon.co.uk/Monster-Rainbow-Memoir-Disability/dp/095526023X/ref=sr_1_1?ie=UTF8&qid=1465477438&sr=8-1&keywords=Meg+Kingston), points out that every writer has challenges in their life, not just those with physical disabilities. ‘All writers have hurdles to overcome. A chronic health problem doesn’t need to stop you writing. I have a MonSter, while other people have kids, different health issues, elderly parents, demanding jobs, all of which steal your precious writing time. All writers know how life has a habit of ruining their plans. A disability isn’t so different. I firmly believe that the difference between a writer and a wannabe is how you deal with life’s obstacles.’
Meg refers to her disability as her MonSter, because she has Multiple Sclerosis (MS), a condition of the central nervous system. The body’s immune system attacks the coating surrounding the nerve fibres, which can interrupt the messages travelling along those nerve fibres between the brain and the rest of the body. It can even cause damage to the nerve fibres themselves. What this means is that Meg’s health varies on a day to day basis, with some days being worse than others. This means her approach to her writing business changes from day to day.
‘Everything takes more effort than it used to. It randomly messes with my physical abilities and steals my energy, so I have to manage my resources carefully. The sheer unpredictability of the condition complicates even the simplest task.’
One of the most debilitating symptoms of MS is fatigue, which not only affects the physical body, but can make thinking and, therefore, being creative, extremely challenging. Despite this, Meg has gone on to develop a flourishing writing business. She’s a successful independent author, her short stories have won competitions, and she’s also contributed to publications such as the New Scientist and the Radio Times. Ironically, much of this may not have happened if it hadn’t been for her MS condition, which forced her to re-evaluate her life.
‘I only began to write when the MonSter forced me to retire far too young from a silly-hours job. So it would be fair to say that MS is the root of all my writing. I have written a lot about disability, but I’ve also had fiction and factual material on other subjects commercially published in a variety of magazines. MS is a significant part of my life, but it doesn’t dominate.’
The writer in Meg has also exploited this life experience, which is how she came to write The MonSter and the Rainbow. Like many writers’ ideas, the book filled a gap she’d found in the market.
‘I wanted to write the book I would have liked to read when I first experienced weird symptoms and had to cope with other people’s reactions to my changed status. At that time, there were a lot of misery memoirs by disabled people and medical texts about illness, but none of these were written to be readable, and none told me what I wanted to know. Since publication of the MonSter, I have had grateful feedback from people with various chronic medical conditions, from medical professionals and people who just wanted to know more about life at wheelchair height.’
Meg is now in discussions with her local health board about ways in which her book can help medical students get a wider understanding of the condition and the day-to-day impact it has on those diagnosed with it.
American writer Kayla Whaley (no relation) was born with the neuromuscular disease spinal muscular atrophy type 3. It’s a condition that requires her to use a power wheelchair, yet it’s not the condition that challenges her writing, but the consequences of coping with it that can cause problems. ‘My physical disability doesn’t present many day-to-day challenges to my writing,’ she says. ‘However, my depression has absolutely negatively impacted my writing at times. My depression tends to manifest itself as intense fatigue and apathy, with a side helping of anxiety. Writing, or doing much of anything, is nearly impossible under those conditions.’
But like Meg, Kayla appreciates that in some ways her disability has given her the ability to develop her writing business. ‘In a roundabout way, it provides me much more time to write, than I would otherwise have, seeing as holding a traditional office job would be difficult.’
Managing this writing workload means being realistic with herself and how she feels each day. ‘It helps to regularly and honestly check in with myself,’ she says. ‘If I genuinely need to take a break, I let myself rest and put self-care first. But if I’m just procrastinating, or avoiding my writing for other reasons, I try to refocus and get back to work.’
It’s a question of understanding your body and knowing when pushing yourself too far will have a detrimental affect on your writing over the next few days. It’s a sensible business approach, because Kayla’s written many essays and articles for American publications. Her agent is busy finding a home for her first novel, and she is currently working on another young adult novel, which features a wheelchair user.
Kayla’s disability affects how she interacts with the world around her, and therefore it influences her writing. ‘My disability is a core aspect of my identify. It shapes how I perceive and interact with the world, how I relate to other people. It’s one of the lenses through which I filter all of my experiences. There’s no way it couldn’t influence my writing. While not all of my writing has an explicit focus on disability, although some does, my disabilities inform me as a person and therefore inform my writing.’
Many writers with disabilities find themselves writing about disability. Not only is it a question of writing about what you know, but living with those challenges gives you experience from which you can draw.
There’s been a lot of discussion in the publishing world about characters in fiction needing to better reflect society, which means including characters with disabilities, as well as those from different cultural backgrounds. An article in The Bookseller last December had publishers and agents praising an increase in the number of books published that featured mental health, lesbian, gay, bisexual and transgender themes, but acknowledged more still needs to be done to feature characters with disabilities.
Kayla is trying to help with this process. She is a senior editor at Disability in Kidlit (www.disabilityinkidlit.com), a website whose goals include helping writers to create more authentic, accurate and respectful disabled characters in their work, and helping middle grade (8 to 12 years) and young adult (13 to 18 years) readers find books with good portrayals of disability in them. But increasing character diversity in literature is not simply about having a checklist of different characters to tick off. Any disabled character needs to be portrayed accurately.
‘There is no one way disability should be portrayed,’ says Kayla. ‘We should have a varied and number of portrayals that it would be impossible to ever read them all. We should have as much choice in narratives as non-disabled readers do. My advice to writers is twofold when it comes to diversity. Firstly, are you the right person to tell this story? Be incredibly discerning in answering this. Be honest and really interrogate your motives, your qualifications, your goals, your privilege, etc. Secondly, are you prepared to put in the effort needed to write a respectful, sensitive story? If you answer no to either of the above points, don’t try to attempt those stories. There’s so much harmful representation out there. Don’t contribute to it, if you can help it.’
That does not mean writers without the challenge of a disability shouldn’t create disabled characters, or that writers with one kind of disability shouldn’t create characters with different disabilities. But we should put just as much effort, if not more, into researching those characters when we create them. As any writer knows, if we get anything wrong our readers soon get in touch.
Both Meg and Kayla demonstrate brilliantly that a disability needn’t stop anyone from running a writing business. It may mean we have to change the way we work, and it might influence the focus of our writing, but that need to write we all have within us will find a way to express itself.
And as Meg says, ‘Just get on with it. If life gives you lemons, make lemonade. If life gives you limes, look for someone with salt and tequila.’
If you have a disability that makes writing more challenging, you may be eligible for a grant payment to cover the cost of acquiring specialist equipment, or to pay for the adaptation of existing equipment. Grant providers who may consider such applications include:
Arts Council England: www.artscouncil.org/funding
Disability Arts Wales offers links to many potential grant funders: http://www.disabilityartscymru.co.uk
Creative Scotland: http://www.creativescotland.com/funding in particular its Unlimited Programme: http://www.creativescotland.com/funding/funding-programmes/targeted-funding/unlimited-programme
Society of Authors: http://www.societyofauthors.org/grants-writers-need lists the various schemes the Society administers, in particular the Frances Head Bequest.
Disability Grants website: www.disability-grants.org/disability-arts.html
© Simon Whaley