It took Oliver Robertson almost six years to learn how to play.
- Just 7 per cent of us believe people with disabilities are supported “very well”, according to the Australia Talks National Survey 2021
- Deaf Australians and parents of deaf children say access to Auslan lessons and Auslan interpreters is hard to come by
- Parents report their children who have cochlear implants are pushed towards hearing and speech, even if it’s not the best path for them
When he was three years old, he would smile when other children bullied him in preschool.
One afternoon when Oliver’s mother Suzie Robertson picked him up from daycare, she watched another child scratch his face and arms — but he wasn’t crying or trying to get away, he was apologising.
“Sorry, sorry, sorry, sorry,” was all Ms Robertson heard her son say until he walked away and played with a toy car, blood seeping from his arms and face.
Oliver was born with acute auditory neuropathy, a rare type of hearing loss caused by disruption of the nerve impulses travelling from the inner ear to the brain.
Doctors believed hours of auditory therapy a week and a cochlear implant would allow Oliver to learn to hear and speak.
His mother wanted to teach Oliver and his twin brother Alec Australian sign language (Auslan) so the family could communicate and, importantly, Oliver could begin to learn a language.
But when Oliver’s medical team found out they told Suzie to “stop it immediately”.
“We were told by the majority of our specialists we couldn’t sign with him because it would affect his ability to listen with his ears,” she said.
During the first four years of his life, doctors thought Oliver was learning to hear with his implant, but he wasn’t.
He couldn’t hear anything unless there was no background noise and he could focus solely on someone’s voice.
When Oliver was almost five, Ms Robertson was told her son was not meeting language milestones and the doctors recommended she begin investigating other pathways of communication — like Auslan.
“I was shocked and devastated as I suddenly realised I had withdrawn the access my son needed and now he was even further behind,” she said.
Ms Robertson wasn’t provided with any information about how to access sign language lessons for herself or her son and “felt so isolated and alone”.
“If there was too much noise in a room he would start hitting himself because his brain couldn’t decipher what was going on,” Ms Robertson said.
She eventually found the Deaf Society and was told there was a bilingual preschool in Sydney Oliver could go to.
The family drove the eight-hour round trip, from Forster to Sydney, four days a week so Oliver could learn a language.
Oliver’s Auslan began rapidly improving.
Majority of Australians believe people with disabilities aren’t supported enough
About 90 per cent of deaf children in Australia are born to hearing parents, and the Roberston family’s experience is not unusual.
Parents of deaf children and deaf Australians have told the ABC they fought for years, sometimes decades, to access Auslan lessons and Auslan interpreters.
But they were pushed towards learning to speak and hear and barred from signing as it was believed it would inhibit their ability to function in a hearing world.
It’s no surprise to these families that just 7 per cent of us believe people with disabilities are supported “very well”, according to the Australia Talks National Survey 2021.
The survey found 35 per cent of Australians believe people with disabilities are supported “somewhat poorly”, and 18 per cent believe they are supported “very poorly”.
Rodney Adams, the acting chief executive of Deaf Australia, said support for children born deaf was too often geared towards a “medical model” that emphasised the importance of speech and hearing, often to the detriment of language development.
From the time a deaf child is born, parents are told their best chance at a “normal” life is being implanted with a cochlear implant and learning to hear as soon as possible, he said.
That way the child has a chance at being able to speak “like a normal person”.
While Mr Adams said a cochlear implant could be a brilliant tool if it works, he said it could not continue to be the only option available for those with hearing loss.
“Language is a basic human right,” he said.
“I have seen a lot of children experience language deprivation because their cochlear implant never allowed them to hear and speak to a high enough degree to communicate with the hearing world.”
Families ‘fall through the cracks’
Stacey Johnson’s nine-year-old daughter suddenly lost her hearing when she was two.
When her daughter was provided hearing aids, Ms Johnson — who is a parent mentor with Deaf Children Australia — said the family was “sent on their way” and weren’t given any information about how to access Auslan.
Her daughter was born premature and has an acquired brain injury, so learning a way to communicate that was visual was extremely important for her development, Ms Johnson said.
“I had to look everything up, I’m lucky I’m obsessed with researching but there are a lot of families who aren’t and fall through the cracks,” she said.
It has only been in the past two years Stacey has been able to access Auslan lessons in the home.
Ms Johnson’s situation isn’t out of the ordinary. She said few families she worked at Deaf Children Australia were granted ongoing access to Auslan lessons because it was classed as a second language under the NDIS; if a child had a cochlear implant or a hearing aid, they were deemed able to communicate with speech and Auslan was “an unnecessary second language”.
Families that do manage to get access to another 40-week block of Auslan are usually the ones with resources to go to court, she said.
‘You want the child to understand the world’
Macquarie University linguistics lecturer Della Goswell — an Auslan/English interpreter and educator — said the lack of access to a first language for some deaf children had created “a generation of deaf adults who are frustrated and angry they didn’t get the education and socialisation they deserved from the start”.
She said many deaf children experience an “illusion of inclusion”: they may be in a classroom with other students but they’re not accessing what other children are accessing because of a lack of communication skills.
“If your hearing is good enough with cochlear implants and you can keep up with the class that’s one thing, but the deaf kids who don’t have enough hearing to do that or have unsuccessful implants are in a little world of their own without access to what’s going on.”
She said not being able to communicate well in any language from an early age could lead to lifelong language deprivation.
“Deaf adults who are language deprived can have huge holes in their world knowledge and relational skills. Mental health is a significant issue for deaf people because of the struggle to be understood and to belong somewhere.
“Solitary confinement is what I’ve heard some deaf people call what they have gone through.”
Chelle Destefano was born profoundly deaf and grew up only being able to communicate with her mum through cued speech — a type of signing that mimics full English sentences.
“It’s not always easy to grasp and most deaf people hate it,” Ms Destefano said.
She was given a cochlear implant aged 13 and said she was led to believe she would be able to hear clearly, but it never happened.
Ms Destafano can only make out different sounds like birds, cars or a phone ringing, but individual words are extremely difficult to decipher.
She learnt Auslan when she was 14 with the help of friends, but she said there were gaps in her knowledge of the language because she missed out on learning it from a young age.
Schools lack appropriate teachers
When Oliver Robertson started primary school, his mother once again struggled.
Ms Robertson requested Oliver have an Auslan interpreter in the classroom with him, but she said the teachers saw Oliver’s cochlear implants and “once again the focus was on his hearing and speech”.
For years, she fought the NSW Education Department in court for an Auslan-trained interpreter to be in the classroom.
Instead, she said Oliver was provided different teachers’ aides that were learning Auslan while supporting her son at the same time.
A NSW Education spokesperson said students who were deaf or hard of hearing were offered tailored support which “can include access to an Auslan interpreter”.
They said almost 300 itinerant support teachers supported more than 1,900 students with hearing disability, which “may include staff that are proficient in Auslan”.
When Oliver was in Year 3, his test scores showed he was failing and had regressed into the “severely delayed” range of learning.
Ms Robertson pulled Oliver from school and began home-schooling him — at the time he was about two years behind in his learning.
Since then Oliver has been immersed in Auslan and at 13 years of age, his speech and language are back in the average range.
The Australia Talks National Survey asked 60,000 Australians about their lives and what keeps them up at night. Use our interactive tool to see the results and how your answers compare.
On iview, watch the Australia Talks TV special, as hosts Annabel Crabb and Nazeem Hussain take you through the key findings and explore the survey with some of Australia’s best-loved celebrities.