Novah and Avalynn
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Novah, 21, has Down syndrome. She lives with her family and has a job with a supportive employer.
Novah’s mum, Avalynn, told the Royal Commission the employer has been ‘fantastic’.
‘The general manager actually said to me, "What can I do to help?" He is the first person in 21 years who has said, "What can I do to help?” Nobody else has said that.’
At the public school Novah first attended, the principal told Avalynn her daughter ‘would never achieve anything’. The school psychologist told her she needed to accept Novah’s disability. ‘I'm traumatised over what that government school did to me,’ Avalynn said.
She is concerned that Novah and others like her are ‘denied the basic rights of citizenship’ because of the barriers they face participating in society.
She said these barriers exist partly because the services that are supposed to help them – the NDIS, schools, disability agencies – segregate Novah and others with disability, so they’re mostly unseen.
‘So when we go out shopping you get stared at. It's like going to the zoo. We're the zoo.’
The problems begin in the education system, she said.
‘We have to beg for our kids to even get educated. We've had a horrific experience from the education system. And it's like “Shut up, just stay at school. What more do you want?”’
Yet, she points out, education really matters, as it is key to avoiding isolation later.
Too often kids with disability are excluded. ‘So we're telling normal children and normal parents – it's okay, you don't have to put up with those people.’
She feels people with disability are often underestimated and patronised.
‘You get the service providers, “Oh, let's make a macaroni picture.” I mean, my daughter's 21. Don't demean her and give her something that a five-year-old would do. And then you bundle them all together … “Oh, we've got a weekend away, let's do 18 to 65-year-olds.” Oh my God, really?’
She explained that in trying to build opportunities for Novah, she keeps hitting dead ends.
‘I wanted the local libraries to provide suitable activity for people between the age of 18 and 54. They don't want to. They do it for earlier, kids before they go to school. They do it for over 55s. But they refused to do it. It is not their role to cater for somebody like my daughter.’
Avalynn says that for people with intellectual disability, connecting with others socially is difficult, particularly when support workers are happy to sit with their clients and watch TV for three or four hours.
‘Or by being told “Oh yes, you can go to a park to form friendships.” … How would you like it – an 18-year-old being friends with a four-year-old? Where is that dignity and respect?’
Avalynn has become an advocate for increasing the visibility of people with disability and creating connections in their local communities. She sometimes feels the fight is too hard, and wonders if she has done Novah a disservice by wanting more for her.
‘It's like, you know, little orphan Annie, where you took somebody out of an orphanage for complete luxury, and then put her back. So have we done our daughter any good? Should we have just ignored her, so she didn't know what [she] could be? … I don't know. But I think that's how all parents feel … You will have heard a lot of parents just say what I've said.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.