Choose your own experience

David signs his crucial moment in Four Weddings and a Funeral (1994)

David signs his crucial moment in Four Weddings and a Funeral (1994)

It’s not often my daughter Amelia will see her specific life experience as a deaf child reflected sensitively in the media, in books, on television or in movies. She could count the instances to date on one small hand.

Of course there is more to my girl than her deafness and I hope like me she will one day fall in love with wonderful real and imaginary hearing characters like Elizabeth Bennett, T.E. Lawrence, Sam Spade and Angel (the vampire with a soul) regardless of how far their lives diverge from her own.

It’s called having an imagination, and we think Amelia has a vivid one.

But let’s face it, there is a dearth of representation in popular culture of deaf people and their experiences, from the historical to the contemporary or the entirely fictional. If you take Helen Keller and Marlee Matlin out of the mix, it’s slim pickings indeed.

I never realised how ‘cutting-edge’ Four Weddings and a Funeral was to feature a young signing deaf man called David (played by deaf actor David Bower), who is more than incidental to the plot, until I grasped how rarely this happens in mainstream cinema.

Ever on the search for positive examples like this one to show Amelia, I was excited to come across a company called Experience Books which sells texts for deaf children and children with autism.

But they’re not just selling books, ready-made in the hope that they might mirror something about your child’s journey, they are (and the clue’s in the title) offering a rewarding experience that is both interactive and tailored to tell their unique story through words and pictures.

So, a few weeks ago Amelia and I sat down to personalise a book about her deafness and what it means in her life right now. It’s a three-step process: you build the main character (hint: she’s a rambunctious, blonde four-year-old), choose the text and create the book. Too easy.

First we selected the book’s theme, which for us was deafness (rather than autism or say, a book for siblings). Then Amelia was able to choose how she wanted her ‘avatar’ to appear, so that in the finished product she would recognise herself in the blonde hair, pale skin, dark eyes and most importantly, silver hearing aids of the main character ‘Amelia’.

Then, the website provided us with an opportunity to drill down into greater detail about the kind of hearing loss Amelia has and the type of equipment she uses to access the world of sound.

A free-text section prompted us to talk about what she wanted to say about herself – who her family is, who her friends are and the activities she loves. The nature of Amelia’s ‘self’ is somewhat enigmatic so I welcomed the chance to test how far she could talk about small things that make up her identity.

Amelia was so excited by my questions and our enterprise that she kept throwing names at me for inclusion, like all of her cousins and almost all of the kids from her deaf kindergarten class (which, in most cases, I had no idea how to spell). It was intoxicating.

We ran out of text space, but we filled in more than a few gaps about what is important to her, about what ticks the workings of her innermost clock.

Another key section of the book is on communication, and it’s great for parents who want to share some crucial aspects about what makes things difficult for their deaf child (loud noise, people talking at the same time), or how people can help (use sign language, get their attention first before speaking).

And finally, the website asked us to enter more detail about Amelia’s favourite things. So, it’s not simply about her deafness and describing what that’s like for her, it’s also about Amelia the girl who likes painting and dancing and signing with her friends.

After we finished entering all of Amelia’s characteristics and clicked ‘send’, it occurred to me that I didn’t really care what the book ending up looking like.

The experience of sitting with my daughter, jostling for space in front of the laptop as we chatted loudly about the big ticket items in her life (“we can’t fit any more names, Amelia!”), is one of my favourite moments as a parent.

Because I’m still working out the best way to be with her or how to reach her, and the opportunity to sit and talk and learn together in a relaxed way does not present itself that often.

Happily, for the purposes of this story, Amelia’s enjoyment and my bank account, the book is a winner. It’s not long and there is a typo where I managed to misspell Grandpa (Granpa is still phonetically correct, right?) but it does everything I hoped it would and more.

Amelia with the book created just for her

Amelia with the book created just for her

It offers that rare thing, a child character with a hearing loss who also wears hearing aids and does kooky, fun things like most four year olds. She lives hard and she plays hard. And has four million friends.

But it’s not just any child’s story, or an approximation of Amelia’s, it is precisely HERS, with the right language to define her hearing loss, the colour of her aids worn in both ears and some of the things that I want people to understand about her deafness before she can grasp them herself.

I don’t expect this degree of looking-glass reflection every time Amelia opens a book or switches on the television. If you constantly search for yourself in the stories chosen by a media beyond your control you will inevitably be disappointed.

Deafness and the lives of deaf people are a marginal interest in that mainstream world, so you have to grab every representation you can find and shine a big light on it.

Like this book called ‘All About Amelia’ which for other families is just a mouse-click away from telling the story of their deaf child in bold colours and important words to cherish for a lifetime.