Thursday afternoon fever

“The main challenge I’ve had is dealing with society’s belief that since deaf people can’t hear, they can’t dance. What people forget or do not yet know is that we all hear with our bodies before the sound enters our ears. This is not just through vibration but also through instinct and impulse.” – Jo Dunbar, deaf choreographer and dancer.

Leave nothing behind.

Leave nothing behind.

WHO SAID deaf kids can’t dance? Or respond to music, the rhythm in the air, their feet, or in their hearts?

Not me. Not after I saw my sassy six-year-old Amelia and her fellow classmates bring their best jazz hands and a whole lot of funk (is my age showing?) to an afternoon dance concert worth remembering. For like, ever.

We knew Amelia had been working with Jo Dunbar from Deaf Can Dance every week. Some nights she’d come home and try out some sweet new freestyle moves on the lounge room rug and I felt sure she must have been watching repeats of Breakdance (no judgement) as part of her training.

She’s no private dancer. No, she demands a captive parental audience, and as usual when her rockin’ recital is done we are instructed to clap as she bows solemnly like the most respectable English gentleman in the county.

We were eager to see how this confident home practice would translate to the bright lights of the school stage. Because every event like this, no matter how small, brings with it a new sense of who our daughter is.

Standing in front of a crowd I see more of Amelia’s true self than when she is in repose or playing by herself in the garden. The shifting expression on her face, the way she moves her hands, that tiny twitch of her bottom lip that signals shyness and something else. Something far more determined.

Like sardines, we packed into a small multipurpose room at the school; sweaty parents stacked on top of each other like a human game of Jenga, jostling for the perfect view.

Jo introduced her drumming accompanist, Koffi Toudji – a veritable man mountain with incredible command of his instrument and the 50-odd children in the room. One wave of his giant hand was enough to magnetically draw the dancers from one side of the stage to the other.

Then we watched, as mini troupes of well-rehearsed kids with painted faces twirled onto the stage, guided by Jo’s conducting hands and the deep, resonant boom of Koffi’s drum. It was a wonderfully rich sound that seemed like it was emanating from inside the walls.

We felt it reverberate through our own bodies, and saw its impact on the smaller bodies dancing on stage. The beat was powerful and intoxicating, pounding in my chest alongside my heart doing the rest.

If my smile had stretched any wider it might have fallen off my face.

And the dancers. They came in all shapes, sizes and abilities, but they held nothing back. Deafness was no barrier to their instinctive feeling for the music, nor their sense of rhythmic movement in response to it.

If one performer lost their way, another (or a patient teacher) would quickly gather them back into a carefully choreographed circle or tap them with a reminder of what to do. They danced with passion and with pride, in themselves and each other.

Warrior #1

Warrior #1

Finally it was Amelia’s turn. I couldn’t get a clear view of her, but I did see her little hips swinging with great verve and her intense concentration as she executed the steps she’d been practicing for weeks.

Sometimes she would get lost in her search for our faces in the crowd, but the distraction was only fleeting. She quickly got her groove back.

Then it was time for Amelia to bang on her own little bongo and I saw the raw delight on her face when it was time to pause and shout a barbaric yawp at the rafters. She looked like a warrior and she sounded like one too.

My husband and I clutched each other’s hands and laughed loudly with pleasure at how free Amelia was, how open and entirely herself. It felt like we were stealing a glimpse of something she didn’t mean for us to see.

At the close of her last performance, Amelia stood and did her uniquely refined doff and bow. She held no feathered hat in her hand but her gesture was so expressive I imagined I saw its soft, wide brim brush the floor.

She danced with sheer joy to the thunderous beat of Koffi’s drum, and more joyfully still, to the one you can’t see; the one that beats inside her, ever constant and true.

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Acting out a mellow-drama

No-one does pathos better than Jackie Coogan in The Kid (1921)

No-one does pathos better than Jackie Coogan in The Kid (1921)

I was talking to the mother of one of my daughter Amelia’s kinder mates the other day. Her little girl, like mine, was born with a hearing loss and has additional needs.

She was telling me about how her daughter had started ballet this year and how transformative the classes had been, how happy they had made her.

The impetus for enrolling her in ballet came partly from her child’s interest but also from the family’s need to do something ‘normal’ outside of all the therapy and medical appointments that populate their days.

Just one day, a single hour, a few stolen moments, where her daughter is merely a girl who likes to wear a tutu, stand in first position and have a go at a plié.

As Hooper says to Quint when they famously compare battle scars in Jaws, I got that beat.

Meaning, I know what it feels like to long for normality in the midst of intense times punctuated by diagnoses and treatments that stretch out before us like a highway with no end.

Our weekly escape isn’t ballet though, it’s Drama Play which is held every Friday in a small church hall on the other side of the city.

The program is run by a youth theatre company and a finer group of creative adults working with children you could not hope to meet.

It’s not that I think Amelia is a budding thespian or the next Jackie Coogan (pre-Uncle Fester), even if she does seem to have a flair for mock-pathos.

The point of going is partly about tapping into a stress-free activity which might help to build her confidence and her understanding of social situations.

But the main reason is far less didactic – I’m just looking for a safe place outside of home and kinder where Amelia can simply be herself. No needles, no tests, no judgements, just fun if and when she chooses to participate.

Each session is loosely structured around a wonderful children’s story which is told in various modes: verbally, visually and through play. A hand-drawn map of the morning’s activities (courtesy of the gifted HL) shows us where we are and also where we’re headed.

Over a child-friendly 45 minutes, the little troupe aged between three and five are led by three awesome pied pipers whose intuitive approach to the creative needs of their charges has been inspiring to watch.

To commence, we sit on colourful cushions for the welcome song (accompanied by animated gestures) then we do some mad cavorting as we ‘sign’ our names with our bodies.

Time is set aside for some free-form dance where every child has a turn to express their individuality and lead the group with their own special moves. No-one directs or pushes. The adults are there to guide and encourage, or step back if that is the appropriate response.

Amelia still talks to me excitedly about a session from a number of weeks ago when the theme tune from the Harry Potter movies was the soundtrack to her turn at the helm of the dance parade.

Back then it didn’t seem as though she was super aware that the spotlight was on her for her two minutes of fame, but these happy recollections tell a different story.

There is a clue in this for me that involves not worrying too much about what Amelia appears to be feeling or experiencing in the moment because looks can be deceiving about just how deep her engagement with the world really is.

Story time is conducted by the dynamic AW who reads to us enchantingly from a carefully chosen book, like Where the Wild Things Are, by Maurice Sendak. Then this narrative world is opened out to include the children and the scope of their imaginations.

The little actors are helped to set up key parts of the story with props, often tactile objects like furry carpets or textured grass-like mats. Then they become ‘Max’, playing the role of the little boy from Sendak’s tale – untamed things on the hunt for an adventure of their own making.

There are no passengers on this journey of self-discovery; parents can’t opt out for fear of embarrassment. We are drawn into the performance fray as much as the little ones and for me it’s actually incredibly freeing to run and jump and sing and harness my ‘child within’.

A final map-check tells us it’s time to go home, so we belt out the closing number and say our goobyes. The time really flies when you are laughing and soaking up the kid’s joyful antics.

I like the sessions because they are so visual and full of non-verbal communication. I’m also a huge fan of the way they follow a familiar pattern every time but allow for loads of flexibility and inventiveness. You won’t find a more go-with-the-flow space to be with small children.

For a bilingual (Auslan and speech) deaf girl with autism who is often inflexible, sometimes anxious and always into routine, Drama Play is a match made in heaven. And there is so much ROOM to play or not play, whatever her mood is on a given day.

Sometimes, she takes 20 minutes to warm up but no-one fusses over her. If she prefers to lie on a cushion or draw, then there is freedom for her to do that.  When she wants to keep holding onto a torch prop long after they are in use, honestly, no-one gives a damn.

But they never stop encouraging. The fabulous artistic director, SA, is always at ground level asking Amelia to engage and then backing right off if the response in speech or emphatic head shake translates to a resounding NO.

And when Amelia is ready, the team embrace her involvement with warmth and positive energy to burn. I don’t really have to do anything, except model what ‘joining in’ looks like, provide some Auslan interpretation and assist with the gentle coaxing.

I don't know, do you think she likes it?

I don’t know, do you think she likes it?

Last week provided something new: a whole session where Amelia was on board from the start of the map, not somewhere down the track after she’d walked her own road for a while.

It may have been because her Dad came with us that morning and Amelia was excited to show him this special place where we go most Fridays.

Or it could also have been because there was only one other little girl there that day who was keen to share in all the drama with her. The girl took her cushion for story time and positioned another one next to her for Amelia to occupy.

Usually, Amelia does not connect with the book reading part of the session or with the other children but on this occasion she sat next to her fellow thesp and really listened.

After a few moments she went back to sit with her Dad, her parental anchor in the circle. But her new friend looked around for her and tapped the cushion as though to say “Come back, this is your place, next to me”.

It was a sweet gesture of inclusion and after a brief hesitation Amelia did go back and take her place next to that girl who I wanted to hug for simply looking back and asking my daughter to join her. To belong.

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.