People can tend to forget that just because one has a learning disability or difficulty communicating, it doesn’t mean one has nothing to say—which is why I decided from a young age that I wanted to do something about this, and ultimately why I wrote my first novel.
My personal story begins when I was four years old and my brother was born. I realized even then that nothing was ever going to be the same, as it soon became apparent that my brother had very severe learning disabilities—which were later diagnosed as Autism—so severe he requires constant care, as he cannot look after any of his own physical needs and has limited language. But I love my brother with all my heart and would do anything for him.
And I’ve watched over the years as he’s been misunderstood, disregarded, and ignored by others. One day, when I was nine years old and my brother was five, we were out shopping in town when he exploded in a tantrum, shouting, kicking, and screaming. Several people came up to us, not to offer help, but to berate my mother, telling her she was a disgrace, that my brother’s behavior was disgusting, and worse. I couldn’t understand why some people were so judgmental. I wanted to tell them to “put on my brother’s shoes” for a moment and try to comprehend what it was like to be him, locked in a world that made no sense, a world where he cannot even tell us he is in pain.
Sometimes at night when he shouted out in his sleep, he could be much more coherent than when he is awake. It set me thinking, “How do we know what someone with a cognitive impairment might actually be capable of inside their heads?”
My brother might have challenges communicating, but he has abilities and skills, and is full of love. He has taught me compassion, kindness, patience, and the ability to empathize. Even when I visit him now, he greets me by placing his head on my shoulder and saying, “My Mel”. This simple statement means more to me than a thousand words ever could. I am the person I am today because of my brother and I can’t thank him enough.
And my brother has especially taught me that we must never assume that somebody who communicates differently has nothing to share.
This has stayed with me throughout my life, as I volunteered at learning and youth centers working with people with special needs like my brother, and especially when I met a girl named Rosie, who became the main inspiration for my first novel, Rosie Loves Jack, because she said something very similar to this.
I met Rosie when I worked at an inclusive college as a Teaching Assistant with a group of teenagers with Down syndrome. The specialist unit of the mainstream college offers a curriculum that accommodates the needs of students with learning difficulties and disabilities. They are offered a varied timetable and are encouraged to become as independent as possible. I loved the fact that these students were very much seen as part of the main college and encouraged to mix at lunchtime and for extracurricular activities. One of my student’s favourite pastimes was playing pool with the lads on enrichment afternoons!
Through the college some of the pupils would also undertake work experience at the local supermarket where they were encouraged to tackle the tasks given to them, independently of me, but I oversaw what they were doing. I think the highlight of their working day, like everyone else, was going to the staff café and choosing their lunch and then eating it on the rooftop veranda with the rest of the staff.
Rosie, one of the students I worked with, was kind, funny, and fiercely independent, determined to make her mark in the world—to work, fall in love, and get married. Inspired, Rosie always pointed out that her best friend’s mother had Down syndrome and was a single mother with a job and her own home. Nothing was going to hold Rosie back; except other people’s prejudices.
I recall very vividly one day when we were having lunch together and Rosie, who was normally so chatty, was very quiet. She looked at me so intently and said, “People think cos I have Down syndrome that I can’t say anything…but it’s not true. Sometimes my words just come out wrong.” This was such a powerful statement and resonated with my earlier thoughts; that we must never assume that someone who has difficulty communicating has nothing to say. Everyone has something to say, and we all deserve to be heard. This, above all else, is what I decided I want my reader to take away from my novel.
Rosie, the fictional hero in Rosie Loves Jack, is also kind, funny, fiercely independent, and has Down syndrome. Through her first-person narration, I want my reader to be able to view the world from the perspective of someone with a learning disability. I want them to feel and understand what it is like to have assumptions made about you. People tend only to talk about the negatives of a learning disability because they can’t see beyond the condition, or don’t know how to. So with this book I wanted my readers to look beyond the labels and assumptions and focus on ability, not disability. Children need to see the world they live in reflected in the books they read, because it isn’t just important for those children who have a disability, for example, but for all children. Inclusion breeds empathy, understanding, and the realization that we all have value and deserve to be heard.
So, I ask that you might walk with Rosie, hand in hand, and see the world through her eyes. I hope you feel her passion, determination, strength, wisdom, and bravery. I also hope you feel the power of the two most important things I learned from Rosie—that life is all about empathy and love.
I would like to leave the last words to my character, Rosie. “Mum told me, ‘Above all else you are a human bean…we love the same…we think the same…and we are as important as each other.’ The words in my head are the same as yours—sometimes they just come out wonky.”
Rosie Loves Jack will be published March 1st, and you can order your copy through any of the following links:
Fall in love with sixteen-year old Rosie, a girl with Down syndrome who’s fighting for little freedoms, tolerance, and love. A stunning, beautifully insightful debut YA novel from Mel Darbon.
“An enthralling story of resolve and grit… a moving and uplifting novel.” –The Guardian
“They can’t send you away. What will we do? We need us. I stop your angry, Jack. And you make me strong. You make me Rosie.”
Rosie loves Jack. Jack loves Rosie. So when they’re separated, Rosie will do anything to find the boy who makes the sun shine in her head. Even defy her parents’ orders and run away from home. Even struggle across London and travel to Brighton on her own, though the trains are cancelled and the snow is falling. Even though people might think a girl like Rosie, who has Down syndrome, could never survive on her own.
Introducing a strong and determined protagonist with Down syndrome, debut author Mel Darbon gives readers an underrepresented but much-needed point of view with a voice-driven, heartfelt story of finding your place an often big and intimidating world.