- Patience centres on a young woman with Rett Syndrome, which you have direct experience of, could you tell us a little about your own experiences and how these fed into/motivated your writing of the novel?
Yes, my sister Clare has Rett syndrome. Being her sister has changed my life – overwhelmingly for the better. Having that sort of unconditional love in your life, that constant amongst all of the fickleness of modern life, is incredibly grounding. She’s now an auntie to my two kids and they love her, too. You can’t not. That’s not to say that it’s always been plain sailing; it’s been the opposite. Rett is a very cruel disease, in that it creeps up gradually on families, stealing away skills bit by bit. My parents had no idea that anything was amiss until she was about eighteen months old, when the skills she’d developed – speaking a few words, pushing her trike, shuffling around on her bottom, holding things – simply fell away. Clare, now 40, can’t walk, talk or do anything for herself, requires 24-hour care and is at constant risk of life-threatening infections. There’s only 18 months between Clare and me, and so our childhoods are completely intertwined. Growing up as the sibling of a severely disabled person can be a very lonely and scary experience and writing about that – and the upsides of our life, too – was a huge part of my motivation for writing Patience. I feel that the experience of siblings of disabled people are often not really considered, and I thought that needed to change.
- You take a multivoice approach in the book and one of the most fascinating aspects of the novel, I felt, was that despite being unable to speak, we get to hear Patience’s perspective, how important was this to you?
It’s incredible how close you can get to someone who is non-verbal. So much communication is unspoken, and our family is pretty adept at anticipating and interpreting Clare’s needs from looks, noises and the tension in her hands and limbs. Despite this, however, there is always an acute frustration that we can’t ask her opinion about issues that affect her, or ask her what hurts when she’s ill. And that silence means she’s often ignored by other people. That’s why writing from Patience’s perspective was crucial for me, because I really wanted people to be able to feel that itch she can’t scratch, or feel that throb she can’t ask for a paracetamol for. I could have written the book without Patience’s voice, I suppose, but it would have been the poorer for it, and I simply didn’t want to. I was determined to do so, in fact. All too often, people like Clare are side-lined, not consulted about their own care, left in a corner while other people talk about them. I wanted to turn that on its head.
- We learn Patience’s thoughts on all manner of things, and crucially on her illness, care, respite and concerns for her family. It’s always difficult to inhabit other’s shoes, but was there an extra difficulty or concern in taking on the voice of someone with such different experiences, whose voice perhaps has not been heard much before? Did you feel added responsibility?
Yes, I felt an incredible responsibility to try get this right. The thing about fiction of course is that you are able to explore other experiences and other worlds – that’s the joy of being a writer. However, I took my decision to write from Patience’s perspective very seriously, did a great deal of research and gave it a great deal of thought. I hope the impression of Patience people will be left with is of a sassy, funny, clever, complex woman with a great deal to say. I’m sure Clare has lots of opinions – she certainly does, if she’s anything like me! I hope she’d be proud of the character I’ve created. She’s a fabulous woman, is Patience.
- Patience’s internal world/character is much more nuanced and sophisticated than her disability allows her to show externally, how important was it to move away from stereotypes and a narrowness of perception around those with disabilities?
Vitally. If readers take anything from the book, I want for them to appreciate the absolute humanity of every single disabled person, however they might appear. Clare has very specific tastes, particularly musically (she’s a Kylie fan, actually. The Take That obsession is mine, and I have so far failed to get her to share it.). She has her own ideas about life too, I’m absolutely sure of it. And yet people routinely ignore her and talk over her, and society in general stops paying much attention to severely disabled people when they become adults. That’s just a fact, and I want to help change that.
- We also get to hear from each of Patience’s family members, including her mum, dad and sister, who have their own struggles as well as their relationship with Patience, how important was it to show this family angle, but also to show that each of these characters have lives and troubles of their own?
Parents of disabled people are unsung heroes. Their experiences are incredibly diverse, but their struggles are very similar – getting the right treatment, the right schooling, the right care packages, the right support for their child. There are hundreds of thousands of people in the UK bringing up a child with special needs, and yet this experience is rarely found in fiction. When I set about writing Patience, it was clear to me that her family were going to be a vital part of her story, and I really wanted people who read it to understand what dealing with those challenges is like, and for people who are in that situation to realise they’re not alone, because parenting a disabled child can be incredibly isolating. I also wanted to make it clear that parent carers aren’t perfect. The media is often guilty of painting them this way, but they’re simply human, and many struggle with depression and anxiety on a daily basis. I feel the pressure to appear superhuman is one most special needs parents would love to be free of, so that’s why Louise and Pete are presented as complicated, imperfect humans – as we all are. As far as Eliza, Patience’s sibling, is concerned, I obviously know very well what the experience of a sibling is like, particularly of being the only non-disabled sibling. I felt a huge variety of emotions growing up, some of which I’m not proud of. Eliza feels a huge pressure to be her parents’ happiness, to somehow compensate for their pain and stress. It was really important to me that I reflected on the sibling experience in the book, and I hope my fellow ‘sibs’ will read Patience and find themselves in its pages. I really wish I’d read a book like this when I was growing up.
- The novel tackles the complicated and multifaceted feelings towards Patience’s disability within her own family head on, were you determined to show the range of emotions/experiences around Patience’s disability?
Yes, as I’ve said, I think it’s important to be honest, and not describe people as heroes, and expect them never to feel pain or jealousy, or guilt, or a desire to be selfish for a change. Families are complicated things, always, and having disability in the mix doesn’t magically change that.
- I was struck by the way you use different narrative styles for the characters, with first person present narration for Patience and third-person past narration for the other members of the family, what was behind this choice and what do you feel is gained by each style in relation to the characters?
Writing Patience in first person present was initially instinctive – she just seemed to fall onto the page that way. However, I realised pretty soon afterwards why I’d done it – it meant that readers could inhabit her mind and her body at that very moment, seeing the world through her eyes. As I’ve said, I want people to really think about her experience, and first person present really does that. However, third-person past narration feels very natural for me, too – I love writing it – and it felt right for my other three characters, while providing a contrast with Patience which I felt really worked.
- At the heart of the novel is a moral conundrum created by the gene therapy trial, which is a real thought provoker and throws up some big questions and dilemmas, what did you particularly want to explore with this?
When I read the first news stories and papers that described the seemingly miraculous recovery of mice with the Rett gene fault following gene therapy, I was astounded. I had obviously daydreamed about what Clare might have been like if she’d been born without Rett, but I had never really believed it might be a possibility. However, alongside this magical thought, I also had some concerns. How would it be done? How would her body and brain cope? Would it frighten her? And what if it went wrong? And really, was it worth it – after all, Clare is a wonderful person as she is – a happy person, a person who loves and is loved. It was this conflict that spurred me on to write the book, to explore how different people might feel about it. I don’t believe these things are black and white.
- I particularly loved the chapters where we have Patience and Eliza ‘communicating’, with Patience’s internal answers and comments to Eliza, do you hope that this portrait of Patience will make people rethink the way they interact with and perceive those with disabilities?
Yes, I really do. Clare and I have always had an unspoken language, and I can see very clearly that she is listening to me from her expression. I hope people might feel more confident about talking to people like Clare after they read the book. That would be wonderful if so.
- It’s hugely touching the way that Pete celebrates Patience’s disability as central to her individuality, her character, and the novel raises the question of what ‘normal’ means, do you think there is still a problem with the way society thinks of disability?
Yes, I do think there’s a tendency to see disability as a flaw, when in fact it’s just part of the variety of life. None of us conforms to a standard version of “human” – our differences are wonderful and myriad, and being “normal” (a usage I hate) isn’t a guarantee of happiness. Patience observes that she doesn’t think much of the way so-called “normal” people make a mess of their lives, and I have to say I’m with her there! The thing is, I simply see Clare as Clare. Not as someone who needs to be “fixed” in some way, although I desperately wish I could take away her pain and her discomfort, which is where Louise is coming from, of course.
- There has been a big push for diversity in publishing in recent years, but disabled characters’ voices are perhaps still not especially prominent or common, was this something that you wanted to address? Would you like to see more fiction prioritised in this area?
Absolutely, yes. Publishing desperately needs more books written by more diverse voices. I should say that in choosing to write from Patience’s perspective, I’m not in any way trying to speak for people with Rett, or other people with disabilities and their families – that is absolutely not my place. I’m simply using fiction to explore how one family and one woman, someone like my sister, who has no voice, might feel – to try to reflect her fears, her pain and her joys, to shine a light on her experience and to begin a conversation.
- And following on from that point, are there any books/writers that have spoken to you/your experiences?
I haven’t yet read a novel which reflects the sibling experience, but there are several books that have done a wonderful job of describing the impact on parents, particularly Shtum by Jem Lester and The Cracks That Let The Light In by Jess Moxham.
- The novel also throws a spotlight on Rett syndrome, which a lot of readers may not be familiar with, how important was it that the novel raised awareness and perhaps even helps gather interest and momentum in research?
I do hope so, yes. All charities have suffered financially since the pandemic, and the two UK Rett charities – Rett UK and Reverse Rett – desperately need more funds to continue their amazing work. I also hope that if there are any parents who read Patience who have a niggling concern about something their child is or isn’t doing, something that is keeping them awake at night, that they should feel confident enough having read it to mention Rett to their doctor, and get their child tested. Early intervention can make such a difference to Rett people.
- Both the gene therapy and eye-gaze technology that are explored in the novel are based in fact you explain in your author’s note, where is the research currently at and how hopeful are you about the possibilities for the future?
The first human gene therapy trial for Rett Syndrome is slated to begin next year in the USA. There are still lots of unknowns, but I really do hope it yields great results. Meanwhile, eye-gaze technology for Rett is now well-established, and seems to work really well when started young. Unfortunately, Clare was in her thirties by the time we had access to it, and she hasn’t really taken to it. We haven’t given up hope, though.
- As a debut novelist, this first book explores themes that are very close to your heart, how did writing the book help your own experiences?
I realised very late in the game (long after I’d finished writing Patience) that part of my motivation for writing it was to give myself the opportunity of living in Clare’s head for a while, to be able to have conversations with her I’ve never been able to have. Writing it had a profound impact on me.
- The last twelve months have been difficult for the world as a whole, but perhaps even more so for those with disabilities, families and carers, did this impact your writing at all?
Clare has had a few close shaves with pneumonia over the years, so the news that a respiratory disease was sweeping across the planet causing the deaths of even apparently healthy people was petrifying. I was convinced Clare wouldn’t survive it if she caught it. I haven’t been able to see her for more than a year now, which has been awful. However, she’s now fully vaccinated, and we are allowing ourself a tiny bit of optimism. She’s a tough cookie. So yes, it’s been a worrying year. Add to that home-schooling (my husband and I had to manage teaching two kids, combined with our own jobs) and writing took a back seat. However, years of meeting tight journalism deadlines has trained me well, so I’ve still managed to finish the first draft of my second book, Grace, which is going through the editing process now. I can’t wait to share it with the world.
- And finally, what one thing do you hope readers take away from Patience?
As it says on Patience’s front cover – that we are all extraordinary.