As a young hearing impaired girl, Kate knew she was fortunate and had a dream to, one day, be a voice and inspiration for kids just like her.
As a young hearing impaired girl, Kate knew she was fortunate and had a dream to, one day, be a voice and inspiration for kids just like her. (She didn’t then know she would be unfortunate to also be vision impaired and going blind.)
Adopted from birth, Kate was diagnosed as being severely deaf as a two year old, and her father immediately took to research and letter writing being 1973, this was long before the ease and immediacy of the internet. Fortunately, a friend had just returned from working as a teacher for the deaf in the United States and told him about the John Tracy Clinic, named after the son of famous Oscar winning Hollywood actor Spencer Tracy and his wife Louise, who in turn directed him to The Shepherd Centre, newly established by Bruce and Annette Shepherd in Australia.
And so the world of sound and speech opened to Kate. With correspondence lessons sent from Annette, her mother began teaching Kate to speak, involving her two sons—a baby and four year old—and all the neighbourhood with the ‘word of the week’.
“Surely you remember some of those daily sessions, blowing out candles in front of the mirror to get the ‘P’ sound or desperately trying to master ‘Z’,” Kate’s mother asked her. “‘K’ was one of the hardest sounds and your name was Katie—a bad choice—why didn’t we call you Nancy, or even better, Elizabeth?”
Kate’s father, then Secretary of the local Deaf Association, continued his research and letter-writing. Kate wore body aids with cords connected to ear moulds and they were only receiving ten dollars a week for expenses when her father began a campaign, writing letters to politicians, government organisations and newspapers demanding post-auricular hearing aids (behind the ear) for deaf Australians just like those in the United States at the time, and more funding for education and early intervention.
As a nearly four year old, Kate was finally fitted with the new aids, but only one. Her mother remembers meeting with Annette Shepherd the next day. “Where is her other aid?” she says Annette asked, to which she timidly replied that they only gave her one. “The child has two ears, so go back to the audiologist today and demand two hearing aids!”
Kate’s father had also succeeded in lobbying for more funding on behalf of other local deaf children, which was a bittersweet win. In the process, Kate was deemed not to be struggling enough, not dumb enough, and too smart, so lost what little funding she had been receiving. All those hours spent working hard on her speech, blowing out candles in front of the mirror, all the neighbourhoods’ involvement in ‘word of the week’, proving what the Traceys’ and the Shepherds’ believed could be achieved, was not recognised.
“My father said to me, “We are so proud of you Kate, in the way you overcome this major problem (the hearing impairment, not the adopted parents!). Remember you were part of some important history and part of its making.”
But I know I was very fortunate. Yes, I did the work but without my parents, the Tracys’, the Shepherds’, and all of the neighbourhood, it seems, I would not have thrived in the way I did. It really does take a village!
As a nearly sixteen year old, an Usher syndrome diagnosis came as a shock when Kate was told to expect to be blind by forty. But believing she had little time to chase many dreams, she was resilient, determined, sometimes stubborn and fiercely independent as she wouldn’t let others deter her from what she knew she could do. When told she couldn’t, Kate showed she could. But she began hiding her two invisible disabilities to avoid the need to prove herself worthy and capable, over and over.
Kate worked as a checkout chick while at senior high school and university, then worked as a graphic designer before she set off on a working holiday to see the world while she could. Just for fun, and to prove that she could, Kate worked as a waitress, barista and receptionist before being offered a freelance contract at a top London graphic design firm without an interview. Someone knew someone who knew Kate as a graphic designer in Sydney, and while Kate loved the fun jobs, especially as there was always someone who believed she wouldn’t be capable to prove wrong, that contract opened doors to more graphic design jobs with better pay and therefore, more travel.
“I was motivated by exceeding expectations and smashing preconceptions. I could pass for abled when I was disabled, and was seen to be ordinary when really, I was extraordinary. All rather wonderful, except nobody told me hiding my two invisible disabilities would make me feel so invisible.”
For many years, Kate was lonely and alone, and never being her true self, never found a place to belong. But remembering the dream of her younger self saved her.
“I realised I was not going to be a voice and inspiration for kids like me if I was hiding. So I started writing and sharing my words. Writing became my therapy, my companion and my friend. And I made a promise to myself, to my younger self, and to all kids like me, that I will always have courage, I will believe in myself, always be true to myself. That I will keep smiling and always laugh at myself. That I will never stop dreaming and I’ll always have hope. That I will do what it takes to be the best I can be. That I will be an inspiration.”
Like her father before her, determined to do something, Kate launched two awareness campaigns for Usher syndrome. In the first, she came out with her two invisible disabilities, and gave a speech for an Usher Kids event on Usher Syndrome Day in 2016, and then in 2018, through her project ‘Sunsets for Kate’, she shared her dream to see a lifetime of sunsets in the lifetime of her sight, receiving tens of thousands of photos from all over the world.
“Although there is nothing I can do about Usher syndrome,” said Kate, “I thought I could take back from it something it would take from me. A lifetime of sunsets. And I could take the fight it has instilled in me to raise awareness and use my impending blindness to open the eyes of others, one sunset at a time.”
Kate, as a young girl, always believed that her cure would come one day, that science would find a way. Now married with two teenagers, as a fifty year old, she still has sight, and she still has faith that one day will come.
“I know I have been very fortunate. For me, and for others like me, there are many like my parents, the Tracys’, the Shepherds’ who have done so much so we can do so much. And I have so much more to do. For me, and for others like me. I am grateful there is the ease and immediacy of the internet for parents of newly diagnosed deaf children today. Access to information and services, like UsherKids, and connection to community. An online village! And so, I will keep sharing, I will keep connecting. One day, we are all going to have something really wonderful to celebrate! And until then, I will keep campaigning, raising awareness and supporting this village.”
Trish BriceTrish was diagnosed with Usher Syndrome Type 2a by an ophthalmologist when she noticed some changes to her vision in her early 20’s. Trish strives to maintain an active lifestyle, and recently fulfilled two challenges to celebrate her 40th...
Lara Miller Suffers Usher syndrome (type 2), a condition that has caused her sight and hearing to deteriorate, year after year, since she was a teenager.Like something of a modern-day Monet, Australia’s Lara Miller is capturing the world as it disappears before her...
Daniel Talko Daniel grew up in a small Victorian town of Bairnsdale. At the age of 21 he was diagnosed with Usher Syndrome Type 2a. Forced to choose between waiting for blindness, deafness and disability or a life well lived Daniel took off around the world to find...
The Schmid Family It took until Hugo was two years old, for the family to learn the boys have Usher Syndrome Type 2c.Julianne and Peter have three boys: Will (6), Hugo (4) and Callan (2). Both Will and Hugo were diagnosed with deafness through the newborn hearing...
The Sandles Family Maggie was diagnosed with deafness at eight months of age, after many months of her mother, Bronwyn, telling medical professionals that she believed Maggie was deaf.Maggie is eighteen years old and finished high school in 2020. She loves sport and...
The Feller Family Hollie and Dan found out that Harry, their third child, was profoundly deaf at birth through the newborn screening program.Hollie and Dan found out that Harry, their third child, was profoundly deaf at birth through the newborn screening program. As...