I’m often asked about how I came to the idea of my 9-year-old protagonist Milo having an eye condition like Retinitis Pigmentosa.
As all things in my writing process, it was the magical coming together of experience, research and imagination.
Ever since the age of three, when I got my first pair of glasses, I’ve been fascinated by sight and vision. I am also hugely shortsighted – when I take out my contact lenses, everything’s a blur. So, every day, I’m aware of having a visual limitation, albeit a very small one compared to those who struggle with real sight loss.
Perhaps because of the huge discrepancy between the world I see with and without glasses, I have a recurring nightmares of being unable to find my glasses or contact lenses. The most frequent of these dreams is driving down a high speed motorway without being able to see the road, signs or other cars. I think it must be one of those anxiety dreams like turning up late to your exams or standing in public space naked. In the dream, I feel completely out of control.
As writer, I naturally made the imaginative leap of wondering what it would be like to lose my sight altogether, or to have a condition that severely limited my vision. This idea buzzed away for quite a while before I wrote Milo.
Then, during one of my contact lens check-ups four years ago, I spoke to my optician about the kinds of visual impairments that children struggle with, and she told me about a little boy she was looking after who has Retinitis Pigmentosa. She explained how Retinitis Pigmentosa (RP) is the name given to a group of inherited conditions of the retina that all lead to a gradual progressive reduction in vision. Difficulties with night vision and peripheral (‘side’) vision are the first things that are noticed. She explained it as being like seeing through a pinhole, a term I use in the book. Later, reading vision (detailed vision), colour vision, and central (‘straight-ahead’) vision are affected, until no vision remains at all.
Sadly, RP does not yet have a cure and, sadder still, it often strikes in childhood. Shortly after I talked to my optician, I read a touching article about a six-year-old girl called Molly Bent who had created a bucket list of the things she wanted to see before she went blind.
The awesome Molly Bent.
One of the things that really struck me about the condition was how, on the one hand, people with RP miss a great deal – they have virtually no peripheral vision. On the other hand, certainly in the early stages, they have the ability to focus very precisely on what they can see. They also develop their others senses. I thought this was a powerful metaphor for how the body and the mind compensates for weaknesses: when we struggle in one area, whether that be social, physical or psychological, we usually develop a real strength elsewhere. I’ve seen this weakness-compensation pattern time and again in the pupils I’ve taught and I believe that it’s a combination that makes for a great protagonist too. Dear little Milo misses a great deal.
These personal feelings, observations and conversations all came together while I was planning and writing What Milo Saw. Almost immediately, I immediately knew that I wanted Milo to have a very special view of the world, in both a literal and metaphorical sense. And that, although he misses a great deal as it gets lost in his peripheral vision, he is deeply perceptive and so, ironically, notices things that others miss.
I did all kinds of research to make sure that my presentation of RP was as authentic and sensitive as possible. I joined online forums, attended events by the wonderful charity, RP Fighting Blindness, and made contact with the RNIB and Blind Children UK. It has been a joy to work with these charities following the publication of What Milo Saw. One of them most special writing events I’ve done so far was a writing workshop with an extraordinary group of children of St Joseph Clarke, a school for the visually impaired.
RP Fighting Blindness have kindly given me a set of sims specs that I take to my events – they look a bit like the 3D glasses you get at the cinema only the lenses are blocked out with black cardboard, leaving all but a tiny pinhole. It’s a great way for my readers to understand Milo’s world. Little, Brown, my publisher, has also created an amazing game that helps readers to see key things from Milo’s world through an online game. You can find a link to this on my homepage.
Pupils at The Eagle House Lit Fest trying on the Sims Specs.
Over the months, I’ve been hugely touched to hear from readers suffering from visual impairments. Just the other day, I was contacted by a young woman who said that her dad read the whole of What Milo Saw out loud to her mum, who has RP. Writing the novel was worth it for just that one story. It is also a joy that we an unabridged audiobook of Milo was created at the RNIB studios so that everyone can hear the story.
There’s a more philosophical side to the story of Milo’s vision and to my writing. Both physically and metaphorically every human being has a unique view of the world, which is something I want to capture in my novels. As a result, I often write my novels from several points of view. It’s a technique I love as it allows me to step into the shoes of different characters and to see the world from their standpoint. It also reminds me that there are hundred ways of telling the same story, a concept that creates the kinds of tensions and muddles that lie as the heart of every great story.
As a contemporary writer, I tackle strong issues relevant to the way in which we live today. It’s been a privilege to explore the world of individuals who struggle with visual impairments and to experience how, just like Milo, these individuals are, without exception, amazingly resourceful, positive and courageous. I hope that What Milo Saw will raise awareness of the condition and spur researches to work ever harder on a cure for RP.
There are some brilliant events taking place around the UK and the world to raise awareness of people living with visual impairments and to celebrate how brilliant, courages and resourceful they are. Have a look at the World Sight Day website and the Sound For Sight concert taking place tonight.