Erik, Elianna and Devin
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.
Erik, 20, has vision impairment and lives with anxiety and depression because of childhood cancer. Elianna and Devin are his parents.
‘In a way, [children with cancer] are kind of given this halo. Everybody likes to think that they're inspirational and wonderful, and, “You're such a brave family”. But in terms of policy and support, it's just not there,’ Elianna told the Royal Commission.
As a child Erik was often sick or having treatment. This affected his ability to attend school and build relationships with his peers.
Erik’s primary school tried to be supportive but, because of the way the education department classified his disability, could only offer limited educational supports.
Elianna asked the education department to pay for a tutor to support Erik while he was in hospital but they refused. Ultimately a charity stepped in, funding resources to help him learn to read.
When Erik returned to school after treatment, teachers failed to take Erik’s compromised immune system seriously. For example, Elianna provided Erik’s class with hand sanitiser at the beginning of the year – the teacher returned it at the end of the year, unused.
At the start of high school, Elianna and Devin gave the teachers a presentation about surviving cancer and how best to support Erik.
The feedback was positive.
Erik did very well for the first couple of years, attending mainstream classes except for maths.
In year 9, the school transferred him to the learning support unit for all his classes. His parents believe the school did this because of NAPLAN.
From then on, the school encouraged Erik to take non-academic subjects with flexible assessments. Erik could complete an essay but needed assistive technology or a scribe to support him. They suggested he do oral assessments instead.
Devin believes the school’s attitude was, ‘Just let him be lucky to be alive, rather than actually live a life of meaning.'
Elianna and Devin fear for Erik’s future.
‘You have to question the wisdom of saving your child's life, if you're worried they're going to be a homeless person as an adult once you're gone and you can't fix it anymore.’
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.