The disabled author experience

The disabled author experience

Paula Knight’s books include her graphic novel The Facts of Life (Myriad Editions). She has written three children’s picture books and illustrated many more. She is currently concentrating on nature writing and poetry. Readers can find her on Twitter @Paula_JKnight.

Liz Nugent is an award-winning writer of the bestselling psychological suspense novels Unravelling Oliver, Lying in Wait, Skin Deep and Little Cruelties (all Penguin). Her books have been optioned for screen adaptations and translated into 16 languages. She tweets @lizzienugent.

Nydia Hetherington grew up in Leeds. She moved to London in her twenties to embark on an acting career, before creating her own theatre company. She completed a creative writing degree at Birkbeck, and A Girl Made of Air (Quercus) is her first novel. She tweets @NydiaMadeofAir.

What are the biggest obstacles you have faced in your writing career?
Paula Knight: My début graphic memoir coincided with a severe deterioration of three chronic conditions, and I became disabled and, eventually, bedridden. This presented a problem for book publicity. I had been looking forward to new opportunities but was able to attend only two events in person that year. As well as the publicist’s work, the good will and enthusiasm of colleagues and peers in my absence was important. However, accommodating Disabled and Chronically Ill (DCI) authors should be integral to the industry, rather than authors having to “overcome” illness.

Liz Nugent: I have a neurological condition called dystonia as a result of a childhood brain haemorrhage, which has recently been exacerbated by a very unlucky fall. The biggest challenge for me is the choice between walking or writing. If I take too much medication, it messes with my head and I can’t write. If I take too little, the pain and spasms in my right leg become unbearable and I can’t walk. I have found an acceptable level of pain I can work with, and in time, I will get used to it and it will become discomfort rather than pain. This isn’t my first rodeo.

Nydia Hetherington: Living with chronic illness, the biggest drawbacks to my writing life are, unsurprisingly, pain and fatigue. Hours sitting at a desk is exhausting and painful. 

What is your writing process and has it changed as a result of your disability? 
PK: Pain and severe energy impairment led to me being unable to draw, hold a pen or type. At first, I used a digital dictaphone, which had to be transcribed. I now write using voice-to-text assistive technology (AT), and help from my carer. With energy impairment, AT isn’t necessarily the answer because I can’t always speak, so I’m not as productive as I’d like. My aim now is to be the Tortoise, not the Hare, and the “write every day” maxim has become ashes in the dying embers of my internalised ableism (discriminatory practices and beliefs against disabled people). 

LN: I type with one hand. I could use dictation software and I have tried but, weirdly, it doesn’t quite work for me. I lose something in the process of getting from brain to page. Perhaps the act of physically typing makes my imagination work harder.

NH: I’ve invested in all manner of gadgets to help with sitting at a keyboard all day. Nothing works. So, I plod on through the pain and fatigue until I need to stop. That’s the only way for me to get my writing done. I’m used to pain, it’s a constant. So, I accept it and deal with the physical and emotional ramifications.

How do you navigate the publication process? 
​PK: My latest publisher was aware of my illness before signing the book, so I felt comfortable discussing any needs and negotiating deadlines. There was a healthy mixture of professionalism and mutual understanding. Years ago, I was reluctant to be public about my illness because I experienced an incident of ableism while freelancing. I’m open about it now and have found most other professionals to be amenable, although I’m apprehensive about whether this will affect future publishing prospects.

LN: I have had to ask for concessions—taxis instead of trains, wheelchair transfers through airports, ready access to a seat at all times, no high stools on a panel interview, etc. This isn’t easy when you are new to the business because you don’t want to be seen as demanding, but the things I ask for are necessary, and I have found that once the people concerned understand why you are asking, they will go out of their way to help you. 

NH: Being a début author, I had no idea what to expect from the industry. In fact, as with most things I expected very little. To be fair, this was not the fault of publishing, but rather the difficulty I have talking about my condition. I have Rheumatoid Disease/Arthritis, an autoimmune disorder and one of the often-referred-to “invisible illnesses”. If I don’t tell you I’m in pain, then the chances are you won’t know. As I’ve got to know my publishing team, I’ve spoken more openly about it. They have always listened and been kind. Plus, these have been extraordinary times and in a way the lockdown and its effects have been a boon for me. 

Book launches often require lots of publicity and events, how have you found this?
​PK: I managed to attend my book launch partly because my editor provided a space to rest. Planning rest time around events is essential, but few venues can accommodate this. Virtual presentation was necessary for me to partake in other events. My editor, [Myriad Editions’] Corinne Pearlman, presented on my behalf several times; I provided the text and images. I made a video for Cardiff Book Talk, and called in live by video conferencing for the Q&A. Recently, I wrote a podcast interview, which was recorded and voiced for me. I was still semi-ambulatory when I attended a major literary festival and was able to secure “VIP” parking close to the authors’ tent, and a guest ticket. Had I been a full wheelchair user, the stage had stepped access only. I have had to forego many in-person opportunities.

LN: I almost never say no to publicity opportunities because let’s face it, they are few and far between. Ask for time to rehearse walking into the TV studio from backstage. Make sure the interviewer will focus on your books and not your disability. I don’t mind talking about the disability angle, because my experience might help someone else who feels they could never do it, but talk about my books first, please.

NH: The rise of online platforms was a blessing. In September 2020, when my book was published, there was a sense of, “We’re all in it together” [owing to the pandemic restrictions]. I didn’t need to explain myself; everyone was staring into their webcams now. I had a wonderful online launch. It was oversubscribed, with people from all over the world turning up to show their support. A live event would have been a dream come true. But the after-effects on my physical and emotional health can’t be ignored (I’m usually in bed by 7 p.m.–8 p.m.), and there wouldn’t have been as many bums on seats. Back then, it was early days for the webinar, and we were still navigating the online events system. The fact that most of my author events didn’t go online and were cancelled was, and still is, upsetting. 

Do you think that your disability informs your writing?
​PK: A significant proportion of my comics and life writing involved personal testimony of illness. Our stories, whether autobiographical or fictional, are important in culture to counter society’s normative narratives of illness and restitution, and medical status quo, which is often dispassionate. There’s an activist element to some of my work, especially after learning more about ableism, but equally I like writing about pigeons enjoying relations on rooftops—some are disabled! 

LN: I don’t really think it does, in my case. It has been said often about writers that we are “outsiders” and that makes us good observers of human nature. I guess you can double that feeling of being an outsider if you have a disability.

NH: Living with chronic pain isn’t something I have written about specifically. This is mainly due to the fact that I still don’t know how to categorise myself (this is how it is with invisible illness, you’re never quite sure where to put yourself), but to say that I am not utterly alive to it when writing my fiction would be untrue. Like anything that defines us, it is reflected in my writing as much as being a cis woman is, as much as my personal history, as much as anywhere I have lived or anything I have have done, or am, or have been. That might sound simple and obvious, but it’s not really. My condition has never appeared in my work as yet, but the fact that I live with it means it will be unconsciously reflected in there somewhere.

What more do you think could be done to support and encourage disabled authors?
​PK: I would like to see provision for virtual presentation and attendance remain for events. This will help towards ensuring wider inclusivity in the industry. We saw it become possible for majority needs—to take it away would be marginalising. I would also welcome more submission windows for underrepresented writers, and for diversity discourse to include disability.

LN: Perhaps publishers could ask the writers they sign up if they have any additional needs, rather than the writers having to eventually volunteer the information? For example, I know several writers who suffer with mental health issues and anxiety, and I think some of them are terrified of admitting it. There are plenty of ways to make everyone feel more comfortable, physically and emotionally. It is in your publisher’s, agent’s, editor’s and publicist’s interests for you to perform at your absolute best.

NH: Publishing, like everyone else, is chomping at the bit to get back to live events. I understand, of course, but it’s unlikely I’ll be a part of that, at least not soon. I’ve no doubt my publishing team will continue to be kind and understanding—they’re lovely people. But the industry isn’t under their control. As always, I’ll push through, find a way, I always do. Still, I wish I didn’t have to.

What’s the best piece of advice you would like to share with other disabled writers? 
​LN: Your physical and emotional limitations should not stop you becoming the writer you want to be. The late filmmaker Simon Fitzmaurice, who had Motor Neurone Disease, wrote his autobiography with eye-tracking software. Shakespeare wrote his entire works with one hand and a feather. There are no excuses any more. If you want to write, do it.

NH: My advice to writers with chronic illness is to talk about your condition. It doesn’t have to be the thing that defines you. Our illnesses might be invisible, but we must be seen.

PK: There’s no need to apologise for asking for accommodations and inclusivity.