Janet
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.
‘I accept my new lot in life [but I have] to fight for even the smallest amount of help due to having an invisible disability.’
Janet is in her 50s and lives with an acquired brain injury. She has short-term memory loss, uses a walking stick and crutches, and needs help getting in and out of her shower, bed and car.
‘It has not taken away my intelligence, but I have no short-term memory. It sucks,’ she told the Royal Commission. ‘I now have an "external" memory i.e. whiteboards, dairies, alarms, audible buzzers on appliances etc.’
Janet’s NDIS plan paid for support workers, but the COVID-19 pandemic stopped them visiting.
‘The support workers have multiple clients and my husband and myself are not comfortable having other people in our unit. I have a lot of chest infections due to my brain "forgetting" to breath deep enough.’
Janet’s husband lost his job during the pandemic and they struggled financially. She applied for the Disability Support Pension, but her memory loss made dealing with Centrelink ‘a nightmare’. Each time she phoned, she had to wait at least an hour for someone to answer.
‘I rely on emails and notes I write in my dairy to assist me to remember where I am up to.’
Centrelink told Janet to produce reports to prove she was disabled, only to be told later she wasn’t eligible in any case, at that time, for the Disability Support Pension.
‘I was informed that my best option was to transfer a carer’s payment my daughter was receiving for a few months over to my husband (which I did) resulting in him getting $200 less a fortnight.’
Her daughter’s Youth Allowance was also terminated. She was told to reapply to get the payments reinstated.
‘I am afraid this is not the correct forum to express my exasperation with my Centrelink dealings and trying to find a way out of our problem situation. I just don't know how to be heard.’
Janet acquired the brain injury during an operation 20 years ago. Since then, she struggled to find work.
‘When I apply for a job and divulge that I have a disability, 100 per cent of the time I did not get the job. [If] I lie and get the job [I] then get fired as my memory problem is perceived as ignorance and arrogance.’
Janet said she wishes her acquired brain injury was visible so she wouldn’t always be asked to prove she lives with disability.
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.