Karen Sullivan, Publisher of Orenda Books
For anyone with optimum ability – physical, mental and otherwise – it’s difficult to imagine what it might be like when things we’ve always taken for granted are no longer there, to countenance a life without ease.
That was certainly the case for me. I – and then my children – rarely experienced anything other than mild illness, but then two things changed that.
When he was approaching two years old, my middle son experienced a serious brain infection as a rare side effect of the MMR vaccine. He was left profoundly deaf in his left ear, and that put us both on a steep learning curve. I was a young mother, completely out of my depth, and pretty much unable to grasp the implications let alone the mitigations that needed to be put in place – sitting at the front of the class with his ‘hearing ear’ facing the teacher; a red-flag alert when he swam competitively, because he couldn’t hear the whistle; a grudging acceptance that he wasn’t ignoring me when I spoke to him. He genuinely couldn’t hear me. Even still, there was so much we didn’t consider. When he was preparing for his first year at the University of Edinburgh, he had to ‘tick the disabled box’, something he was reluctant to do, something he had literally never done, and the services and products on offer filled me with guilt. They could, for example, provide a vibrating pillow that worked as an alarm. It honestly never once occurred to me that he wouldn’t be able to hear an alarm. Rightly or wrongly, we operated as usual and most of his friends – even close ones – were unaware that he was deaf.
But it got me thinking, which got us talking. Where’s the shame in admitting that you’re different? That your needs are different? As someone who has always encouraged my sons to be themselves, to be unafraid of being different, I was surprised and a little saddened that this particular difference was somehow embarrassing for him to admit. When he was applying for his first jobs as a trainee lawyer, he outright refused to ‘tick the disabled box’, and I didn’t really know what to think about that. He got a job; I doubt they know that one ear doesn’t work.
That’s an invisible disability, I guess. Like chronic illness or pain or emotional illnesses or anything else that makes us less or un able. And that’s where the second thing comes in. It’s no secret that I became seriously ill when I caught Covid in March of 2020, and it changed my life completely. I suffered not just from Long Covid, with overwhelming, crippling fatigue, brain fog and memory loss (to the extent that I had to surround myself with notebooks and write down everything, when previous to this, my entire business and home life was held there), arthritis in my fingers, and staggering digestive pain and headaches that would appear for no reason. I also cried a lot. And slept. My abilities were disabled, so that, in itself, becomes disability, right? With every subsequent case of Covid (and I’ve had alarmingly many) and even vaccine, I was flattened completely. Disabled. Unable.
In publishing, we talk about diversity all the time, and getting recognition for groups of people who are not represented the way they should be, but that focus has been far too heavily weighted in favour of class and ethnicity. True diversity means representation in books, in marketing, in everything, for all groups of people, including those who are disabled – visibly or invisibly, obviously or hidden – and we, as an industry, definitely fall short on that front.
A number of our Orenda team have disabilities, including chronic illness, and we are, as a result, collectively compassionate, and eager to ensure that our events, for example, are accessible, that our working practices are fair and inclusive, that our books are representative. But it wasn’t until Covid stopped me in my tracks that I realised the immense importance of including characters and situations that might fall outside the ‘able norm’ in our books.
When people see themselves represented in books, they feel seen and reading becomes more relevant and immersive. When we read about people whose lives are different from ours, who face challenges that we cannot even begin to imagine, we learn. We understand more deeply; we can take a literary walk in another person’s shoes. And only then can there be the change we need to see in our society. It took a personal experience of being unable for me to understand the importance of this; the importance of awareness, of compassion, of inclusion, of representation … of the need to include accurate portrayals of disability and the disabled in our books, and to keep this in mind in everything we do. I would, personally, devour a book that encompassed my experience; my son and I would both be riveted to a book about ‘invisible deafness’, and we would urge others to read it too.
We’re actively seeking change, within the parameters of our determination to publish bold, original, thought-provoking fiction, and we urge other publishers to do the same. Indies are well placed to forge a path, and that is exactly what we’ll do here at Orenda Books … an accessible path, of course.
