Celebrating a success story for International Cochlear Implant Day

A big step forward in my professional career was the day I presented myself at the Bionic Ear Institute in Melbourne and asked for a job from Professor Graeme Clark. I found the Bionic Ear Insitute to be a very special place. It had a greater concentration of experts than I had ever experienced anywhere before. A researcher is accustomed to using libraries to learn more, but at the Bionic Ear Insitute, it was often easier to just go and ask an expert.

It was typical of Graeme to give me a chance even though I had been out of the scientific workforce for years. Of course, going to the Bionic Ear Insitute was exciting because, at the time, cochlear implants were often giving someone who had very little or no residual hearing an ability to understand speech in good listening environments. But there was still a lot to be done, to make it work better.

So, I had been working on a new curly electrode with Graeme Clark, the talented engineers at Cochlear and many surgeons around the world. The new design implant we were developing was pre-curled, that is, it went in straight, and end up tightly curled around the central spiral of the inner ear. This meant it could be nearer to the hearing nerve and thus more efficient.

Jodie Harris was an early recipient of this new device. Jodie is one of the bravest and most determined people I know. She had lost most of her hearing by the time she was five but I think if she had been born with only one leg she would have climbed mountains. She’s an actor today, an actor with a cochlear implant, and mother to two beautiful children.

In 2007 Jodie asked Gareth Ellis to write a script based on her experiences of losing hearing and getting a cochlear implant. In response, Gareth gave us The Sound of Waves; a play for a solo performer, with all characters to be portrayed vocally and physically. 

Jodie said, “My first response was “how on earth am I going to do this?” Me, a deaf actor who has struggled for years to find a voice that could be heard, not only by her audience but in the everyday world? Then a tiny voice inside me, in the words of the weedy Seahorse in the play, said… “I can do this, and that, check it out, I can DO this.” 

When I saw The Sound of Waves, shown only to a small invited audience, I found the impact enormous. This is how I came to add Producer to my resume. 

This is Jodie’s    story:
Before she was 6 years old, her parents witnessed Jodie racing around the house, panicked, unable to hear them respond to her calling. She was getting in trouble for not doing as she was told. Finally, it was confirmed that Jodie had a moderate to severe hearing loss, not a cold. She would rely on her, already well developed, lip-reading skills through the next 23 years of her life as her hearing progressed to a profound loss.

Jodie seemed to be coping well for a while: she was close to her family and had firm friendships. She loved people and was interested in everything. She wanted to act for as long as her parents can remember. Her parents never treated her differently from her sisters and it never crossed her mind that acting might be a somewhat challenging career choice! It gave her a chance to delve into the lives of others and in a sense, escape from hearing loss in that moment of transformation to another being. Jodie was always positive about her hearing loss – there was nothing she could do about it so no point dwelling! She knew it shaped who she was and that it brought blessings so for a long time she wouldn’t have changed things. She could not sign and she went to a “hearing” school. She already knew she needed to work twice as hard to get half as far no matter what she did, so she may as well do what she loved.

Over time, those close to Jodie began to bear the brunt of a growing, uncontrollable, all-consuming sense of rage. It was explosive and erupted at the tiniest provocation. It never erupted towards her hearing loss – she had to be positive about that. There was no way out. As time went by, Jodie began to retreat further and further from those she loved and from the world. The amount of concentration it required to stay connected with her family, friends and the community was just too hard to maintain for long periods of time. The world was very different then: no email, no internet, no texting on mobile phones. She hated how dependent she was on others. She had heard of the cochlear implant but was told she was not a suitable candidate.

One day Jodie stumbled across a specialist who decided to refer her to the cochlear implant clinic even though she had some residual hearing. Residual hearing meant she could hear sound with hearing aids that amplified things to the level of a jet engine however Jodie couldn’t make sense of that sound. At the time people with residual hearing did not receive implants because when the electrodes are pushed into the cochlea they usually destroy the remaining hearing. Months of testing and tears followed as the Cochlear Implant Clinic tried to determine whether Jodie would be better or worse off. At this time Jodie was in her first year at Victorian College of the Arts studying acting.

June 11th 1999, Jodie became a recipient of a new type of cochlear implant as a research patient. It was at this point she developed a firm friendship with the leader of the research team, Elaine Saunders. She also began to work on her voice intensely at VCA with Geraldine Cook. Her articulation was not bad, but her voice was high and thin, which is probably how she last heard it as a little girl. When she started at VCA, she could not make an audience hear her voice.

The cochlear implant gave Jodie a new life. She was able to be herself again and the rage evaporated. She found the world and how to be in it again – she found her voice. She discovered that hearing and being heard are vital to remaining connected to the wider community.

Geraldine guided Jodie in investigating her voice and continued to encourage her to push past new boundaries. They were both excited about what they discovered, and their partnership resulted in an Australian Research Council Arts/Science linkage grant to investigate whether their discoveries could benefit others with hearing loss. The original showing of The Sound of Waves was Jodie’s research outcome. Jodie sat down with writer, Gareth Ellis, and for the first time shared and reflected on what had actually happened to her.

That first performance, produced on the smell of an oily rag, revealed something special. Through the metaphor that the audience shared they were able to identify their own experiences of loss, grief, isolation, despair, and depression. And they had a good laugh along the way.

Elaine Saunders and Peter Blamey were in that original audience and believed in the project enough to offer cornerstone funding and a great deal of in-kind support to raise the required funds and support from a diverse group of individuals and organisations. They demonstrated much patience as an extraordinary team of artists kept developing, dreaming big and pushing up the budget!

We live in a society with escalating mental health issues. Many of us hide what we are really experiencing from the world. The Sound of Waves gives a voice to these unseen experiences. In a society that requires us to ‘get on with it’, it articulates something that we are unable to describe in words. It gives us the space to connect to and find a greater understanding, of each other and of ourselves.

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