The Fault in Our Stars and Me Before You are great novels by amazing authors that bring understanding about those who live with disabilities, but as Lily Rouault said, “They’re quite sad.” Which is one of the reasons why Lily wanted to become an author, to be able to portray disabilities is a happy and positive light.
Lily, 28, from Newbury, has Cerebral Palsy and Epilepsy, “I’ve never considered myself disabled, I consider myself a person with disabilities.
“Having epileptic fits, they’re not fun. They’re really not and they take a toll on you for weeks and weeks sometimes and these take a toll on the people around you.”
However, this hasn’t stopped her from achieving her dreams. Lily has worked in early years for 11 years and has volunteered for numerous charities.
“The reason why they hired me was because I have cerebral palsy and epilepsy and I’ve been there, I’ve done it, I’ve seen it. A lot of children don’t get that voice and don’t get that ‘it’s ok, you can get out of this’, they don’t have that person to see it as an adult.”
Not only has Lily had the opportunity to work with children, but provide support to adults as well, “It was a big eye-opener because I had conversations with adults of all disabilities and they were able to be honest with me. They were able to say what they struggled with, what they don’t struggle with and also misconceptions about disability.”
But through all of this, Lily knew that she wanted to become an author. Throughout her life, Lily has always read as a hobby, “I find that books are a way to escape your life. When work, uni or whatever is getting crazy you can pick up a book and in 20 minutes you can escape, enjoy and just forget about what you’re dealing with.”
For the past year, Lily has been working on her novel ‘Life is what you make it‘. The book follows a girl, Amy, who has Cerebral Palsy and Epilepsy and is trying to achieve her dream as a West End actress. However, the road to that dream is not a smooth one. With the help of her best friend, Jack, Amy navigates life’s ups and downs.
Before Lily began writing her novel she watched a lot of YouTube videos and completed research into writing. When she started, Lily had six chapters and wrote a sentence for each one about what she wanted to happen, “That’s all gone out the window! I let my mind run free of how I think the characters should develop. So, I didn’t have everything planned out, I didn’t have the ending, I didn’t know how it was going to end, no idea!
“It was tougher than I thought. I think the hardest part was the editing process, I knew what I wanted and I knew what the message of the book was going to be.”
One of the characters that Lily was sure about was Amy. With both Lily and her character Amy having the same disabilities, readers may think that Lily wanted Amy to be just like her. However, Lily said she “made sure that Amy isn’t me”.
“There are things that people who know me would go, ‘Oh, that’s Lily!’, ‘Oh, Lily does that!’ but I made sure it wasn’t an alter-ego of me because I didn’t want that.”
Also, it’s not just Amy that is based on a real person but other characters as well, “The story details are slightly different but I want to protect them and don’t want to feel like I’m telling their story when they might not want it to be told.
“I looked at the people I have very close to me and that have been through my disability journey with me, through the good and the bad. It was important that they got a mention and they were able to inspire me to create these characters.”
But one of the most valuable characters for Lily is Amy’s mother. Lily said that her favourite part of the book is the interactions that Amy and her mother have.
“Amy, her mum and the relationship they have, it’s not the same as me and my mum but it’s just having someone that is your biggest fan but also tells you the truth. That’s what you need in your life, disability or not. You need people to be honest with you and say, ‘Look, this isn’t a good idea, don’t do it’ but also, ‘come on, you can do this, you’re better than this’.”
And Lily’s mother has been just that, “Every single version, she has read. She’s been absolutely incredible. We’ve sat down for so many hours and brainstormed. She read through and was like, ‘that’s good, maybe tweak that, maybe do this instead, maybe go down this road’. So, she never told me what to do but she was definitely a mentor and a guide throughout this whole process.”
When asked what those with disabilities should take away from her book, Lily said, “That it’s ok! I grew up in a world where the people closest to me accepted me but school was hard. I was put in a box that was part of a disability unit, which supported me incredibly, they’re incredible people and I’m so thankful for what they have done but it was sort of, ‘oh, you’re part of that unit, we don’t want to really deal with you’.
“Now we need to have the knowledge and I feel that people are sometimes people are scared to ask the questions because they feel they’re offending which I totally understand. However, I would rather somebody ask me what disability or what I can’t do than make assumptions about me because they’re usually wrong.”
On the other hand, for those who don’t live with disabilities, Lily wants to convey the message, “We still have dreams and aspirations.”
As this is Lily’s first book, her writing journey is only just beginning.
“So, I am already working on book two, which has been on the pipeline for about six months. It’s in the very, very early stages but it’s a big risk and it’s going to be based on lockdown. It’s going to be looking at the darker side of disability and more mental health and how things could affect us without even realising.
“Then I hope to revisit Amy and Jack and see where they are in five or ten years. So, that is the timeline for the next sort of two or three years.”
To purchase Lily’s book, follow this link!
If you’d like updates on Lily’s books and to follow her journey, go and follow her on Instagram at @authorlilyrouault.
Feature image by Elisa Calvet B on Unsplash.