Why I Wrote “Mika and Max”

By May 21, 2020June 18th, 2020Life
It makes me sad, and mad, that the first person with a disability who I ever got to know was my own baby! This is because, growing up, I had been separated from people with disabiltiies – or, rather, they had been separated from me. Not only in my education and day to day life, but in the books I read, and shows I watched on TV. People with disabilities, and their stories, were so effectively and comprehensively excluded from most mainstream culture that I wasn’t even aware it was happening until I became the mother of a child with a disability myself, and then my eyes were opened. Not only to how destructive – to everyone – able-ism is, but also to how beneficial a culture of inclusion – for everyone – can be.
So, when my son Leo was diagnosed with autism, as a baby, there were very few examples for me to look to, in fiction or in life, of what a happy childhood for a person with a disability might be like, or an inclusive community, let alone what it might be like to connect with someone with a disability.

I wrote Mika and Max, a story for readers 10 years and up, because I wanted to write a story about the journey every person has to make to connect with others, and the importance of finding your own voice.

I also wrote it, though, because I wanted to write a story in which one of the main characters has a disability, and to give that character as much agency, personality and individuality as anyone else in the story – because that’s what I’ve found to be the case with my son.

Like Leo, the character of Max in this story is non verbal and has autism, and it was one of the challenges for me in the writing of this novel – without the usual luxuries of dialogue or direct speech – to make sure Max expressed himself in own voice. Like Leo, the character of Max has a real talent for connection and creating rapport, and he has a lot in common with the other young people in the story also, especially Mika.

But Max is also different. He’s different to anyone Mika has ever met before, and different to most of the people we come across in fiction. As well as not speaking, he reacts differently to things like water, and music, and tiredness, and at times he moves through the world very differently, as well. How much of this is due to Max’s autism, and how much of it just due to Max being Max is a question I wanted to leave open in the novel, and to explore. We can never all know all the ‘answers’ about another person, and this is no different when it comes Max.

One of the things Mika learns to know for sure, though, is that the more openly and authentically she connects with Max, the more of himself he shows her; and that when she stops listening, he shuts down. What happens in this story between Mika and Max is an example of what can blossom and grow, between any two people, when we reach across our differences to connect.

As well as writing about a young person who has autism, I also wanted to write about a young person struggling with anxiety – which Mika is – because that’s something that’s happening increasingly among young people, and seems to me to be a natural outcome of an education system and society obsessed with comparison and competition.

And that’s also where my experience as the mother of a child with a disability comes in, because, in the course of trying to ensure that Leo grows up in an inclusive environment, based on an acceptance and celebration of his own unique abilities and traits, I have experienced over and over how much happier and healthier all children are when they’re living in that way. And adults, too, for that matter, also! Mika learns more about that – how to live it, and how to create it, for herself and others – in the course of this story.

I hope Mika and Max will be embraced by readers because it has important things to say about what’s of most value when it comes to who we are and what we have to offer the world.

Even more importantly, though, I hope it will be taught in schools and distributed widely, because the stories we tell and listen to reflect who we are, and who we want to be, and people like my son Leo and our family are a crucial part of that.

Click here to see this article, in its full glory – with photos! – published in Links magazine.

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