Growing up CODA
Source: ABC News
Author: Patrick Wood
Published: April 21 2018
What it's like to be the only person in your family who can hear
Jodee Mundy was just five when she got lost in Kmart.
Separated from her mum and discovered by a friendly staffer, she was taken to the front desk and a call was put out over the loudspeaker.
A few minutes passed but no-one showed up. Another call was made. Another no-show.
Suddenly her exasperated mum Gillian was beside her, demanding to know where she had run off to.
"I said: 'But the lady made an announcement on the microphone'. And my mum looked at me, and signed: 'I'm deaf. You know that!'" Jodee says.
It was a moment of sudden realisation for Jodee: she'd never really understood what it meant that her two older brothers and both parents were deaf.
"I didn't see what they could not do, I could only see what they do," Jodee says.
"Suddenly, I realised there were two camps. My family were in one camp, people who hear were in another, and my feet were in both. Ever since then, I've been trying to bring those two worlds together, and find a sense of peace."
Capital D Deaf
Jodee is what you call a CODA — child of deaf adult — a "hidden minority in a minority community".
She describes Australian sign language (Auslan) as her first language, and English as her second. After all, in her home no-one actually spoke English. Ever.
Her family is what's known as culturally deaf — capital D Deaf. Instead of thinking of deafness as a disability, being Deaf is seen as a difference and something to be proud of.
"It's like Italian is spelled with a capital I. A Deaf person sees themselves as part of Deaf culture, and that's a capital D Deaf," she explains.
"It's not just that I'm medically deaf — I'm Deaf! I sign, I'm proud, I roar, I am not ashamed of my language."
The Mundys even had two deaf cats — white cats with blue eyes, which have a genetic tendency to be deaf.
"A lot of Deaf people get them. It's a thing!" laughs Jodee.
In many ways Jodee's childhood was like anyone else's: family holidays, backyard cricket, birthday parties and chasing around after her brothers — much of it captured on old Super 8 film.
In other ways, however, it was markedly different, as from a young age Jodee became a conduit and interpreter for an entire family.
Some interpretations were simple, like making appointments. But others were more complex.
"Things like 'tell your father there's no work for two months', or 'your great aunty has died'. Big things for a child to tell an adult," she recalls.
Jodee would often sit next to the TV and interpret the news for her parents, and remembers doing so as the Berlin Wall came down.
Sometimes dark scenarios would play on Jodee's mind — like what would happen if someone broke into their home at night.
"I used to get really scared because if someone broke in no-one could hear me scream," she said.
Lying in bed at night Jodee developed a plan. She would crawl down the dark corridor to her brother's room and wake him up, writing out the letters B.A.D — M.A.N — I.N — H.O.U.S.E on his hand.
"That's the life of CODAs," she surmises.
By the time Jodee hit her teens, she'd had enough of interpreting for her family.
"I used to fight a lot with mum. I used to scream, 'I'm not your secretary. Find someone else to do it'," she recalls.
"When I look back, it was pretty hard. But I think I've forgiven myself for being such a terrible daughter. And I was a good kid, I just didn't understand the system."
Jodee says music was her saving grace.
"It was my link to the hearing world and pop culture. I could play it as loud as I wanted," she says — adding with a smile that one time, the neighbours complained.
Jodee was about 15 when she first heard about the term used to describe kids like her, CODA.
"I suddenly had an identity. I wasn't just this kid in a Deaf family. I had a home, I had a name," she says.
It's a feeling she believes is expressed in Auslan itself.
"To sign deaf, you get your index finger and your middle finger, and you put them over your ear and then over your mouth," she explains.
"To sign CODA, you take the deaf sign but you take your two fingers from your ear onto your heart. So when I introduce myself, I say I'm a CODA, I have deaf heart."
When Jodee tells people her story their response often falls one of two ways: those who exclaim how interesting it is, and those who exclaim at how hard it must have been.
"I guess in a way two camps of people — some people are more about glass half-full and others are a bit more glass half-empty," Jodee says.
The Mundy family did look into it, but there's no discernible reason why Jodee can hear and her brothers and parents cannot.
"We don't know, we have no idea why. It's just the beauty of nature," Jodee says.
When Jodee was growing up in the 1980s, services for deaf people were very limited.
"You could only get a free interpreter for a funeral or wedding," she says.
"My mum went through labour three times without an interpreter in hospital. Can you imagine giving birth and not knowing what the doctors are saying?"
New technology, in particular phone and internet developments, is breaking down barriers of communication and offering a freedom like never before.
Jodee was never able to call her parents for a chat, but now she can video-call them. She says the first time that happened, she wept.
"I could [communicate with] my mum on my own phone. Not through a service, not out of necessity, not through pen and paper," she says.
"It was my mum and dad, in real time, on my phone. People forget how special that is."
Cochlear implants have helped other hearing-impaired Australians, and brain-scanning hearing tests are now common in the first days after birth to address any early issues.
Captioned TV — which Jodee first saw on the soap show Neighbours — is now standard.
Jodee welcomes the technological shift and advances in medicine, but not if it comes at the expense of Auslan.
For the Deaf community, Auslan represents more than just a means of communicating — it is a language of itself that is integral to Deaf culture.
"So while able-bodied people and the medical model may say, 'Hooray! We have fixed everyone!', we're actually at a serious risk of losing a beautiful language," Jodee says.
"There is a very high risk that Auslan could be extinct in about two or three generations, which is a real tragedy.
"For me and my family in the Deaf community, Deaf is to have a culture of speaking with hands, to use light as a way to signal.
"I'm really proud that I'm bilingual and that I can speak with my hands but also with my tongue."
A plan to preserve Deaf culture
Her passion for preserving this culture has driven her to create a new theatre production, titled Personal, which opens in Melbourne next week.
While Jodee is the performer, the show itself has been a collaboration with her brothers and parents over the past seven years.
It tells their story through live performance, the original Super 8 footage, and Jodee's drawings of her experience as a CODA.
Jodee hopes people who see Personal will realise the Mundys are a regular Australian family, albeit one with a somewhat unique culture and language.
"We are just as diverse as anyone else and [want people] to see beyond disability and to see our culture is about inclusion," she said.
Her mother Gillian goes further, and says while societal attitudes towards deaf people have improved in her lifetime, there is still a long way to go.
"Many things still need to improve around education for deaf children," she says.
"We need more awareness in the mainstream about our community, our struggles, strengths, our culture and our language."