Why I Wanted to Write About Disability
Children's writer Nicola Davies had a difficult journey towards getting her new picture book, Perfect, published. However, she was determined to get the book, which tells the story of a young boy and his disabled sister, into the hands of readers. In this blog post Nicola tells us a bit more about the beautifully illustrated book and explains why she was so passionate about it.
Perfect is a story about the birth of a disabled child, told from the perspective of an older brother waiting excitedly for the birth of his little sister. Although I was the youngest in my family by a decade, there are many things from my own life that I used in the story, including my mother’s experiences as a deaf person. Mummy heard the world through a hearing aid. As a girl it had been the size of a car battery but by the time I was born her ‘aid’ was mobile-phone sized. It buzzed and whistled constantly and she’d joke about receiving messages from aliens. I never heard her express a shred of self-pity, but she often said that she would rather be blind than deaf, because of how isolated it made her feel. And she raged sometimes about people who treated her like an idiot because she couldn't hear properly. She always said that other people’s attitudes to her deafness were a bigger problem than the deafness itself.
I never for a second thought of my mother as disabled. She was just herself; her deafness was familiar to me, so I didn't think about it as something that defined her. But I’ve often caught myself making assumptions about people whose disabilities were unfamiliar to me - defining them by a medical diagnosis, and so making my attitude into a bigger problem than their disability.
I wanted to write a story that gave a space for children's feelings, that allowed the unsayable to be said
As a society, our attitudes to disability need to change. But we are stuck in a negative cycle that shuts out people with disabilities in so many ways - everything from a lack of ramps to access public places to bullying. People with disabilities can be forced into invisibility, and so become ever more unfamiliar to the rest of us.
One of the ways in which this happens is through our reluctance to talk about disability and the challenges it raises for the people and families who live with it. When a disabled child is born, there is a lot of fallout. Everybody has to adjust their expectations and there are, inevitably, powerful feelings involved: disappointment, grief, anger. All sorts of ugly things rear their heads. In time, as the new family member shows that they are a person, not a label, those negative feelings are erased and replaced by love. But pretending that the initial difficulties do not exist isn’t helpful, particularly for young children who may be confused by their own feelings.
This wasn't a story that was received with open arms by the publishing world. Perfect was rejected by publishers, time after time. So, I was delighted when it found a home with Graffeg Books and a stunningly talented artist to illustrate it in Cathy Fisher.
It has had its first outing in schools over the last month, and I’ve been bowled over by the response. For example, in a class of 30 children in Hackney, six had direct experience of the birth of disabled siblings or close cousins. They absolutely understood what the book talks about. The story opened up an amazing conversation about how the children felt about their siblings and about how the world had reacted to their various disabilities. It also sparked something else. Without any prompting, the children instantly acknowledged that ‘disability’ is just a label of ‘difference’ and began to talk about other sorts of difference that leave a person isolated. In this multi-ethnic class where, for more than half the children, English was a second or even third language, this was a particularly powerful discussion.
I’ve come to realise that there are many, many more families than I first imagined who will identify directly with the experience of the family in my story. This is a story about disability and how we see it, but it's also about any sort of difference, and how we make space for diversity in our society. And of course, it’s a story about the family, that magical, difficult institution, which can, in its best form, transcend all trials and make us more human, through love.
Here are a few clips from children's writing in response to Perfect:
On may both my cousin was born. She had a hole in her heart. I still don't leave her alone. She will never be different than other people, she is a normal person just that she has a disability. I always get happy when people give nice phrases about her. She always get happy when I play with her.
from ‘Be Proud’ by Jibran
They say ‘you have a problem’
They say ‘cross eyed clown’
They say ‘he has a disease’
Do you know, whatever people say would not matter. You should be proud of how you are and what you have, people who name call you, will never change your life…always respect everyone, and be proud.
from ‘He’s Perfect’ by Sonny
He’s got a disability. So what? He’s the same as us. I will keep on living him non stop.
He’s always happy. He likes ducks who’s feet are flappy. His best friend is me. My friend is him.