Dania and Emelia
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.
Emelia has been the sole carer of her daughter Dania since Dania’s father died 20 years ago. Dania was born with a chromosome disorder that led to disabilities including autism, difficulties with speaking and epilepsy. She also has hearing loss and is visually impaired.
‘I'm getting weepy just trying to put this into words,’ Emelia told the Royal Commission. ‘I just want to draw attention to how much pressure can exist in the relationship between the carer and the person with disability, which no doubt often leads to anger and violence.’
Emelia said there had been times when she felt pushed to her limits by Dania’s behaviours and complex needs.
‘I have occasionally been hit and baled up by the daughter I care for, and there are many times when my patience and diplomacy have been pushed to the limit by her causing me to lose sleep, her being uncooperative or unreasonable, or just the stresses caused by her seizures and other difficulties.’
Emelia said that she has never yelled at or been violent towards Dania, but ‘it takes an enormous will‐power and unusual coping skills to keep our lives on an even keel. When I hear about abuse of people with disabilities, it reminds me how fraught the whole system is – for the carers and support workers as well.’
Emelia has another adult daughter, older than Dania, who also has disabilities, but who has been able to live independently for the past few years thanks to the Disability Support Pension. Emelia said she had also been helped financially following the death of her husband.
‘I often wonder how anyone would cope with living or working with someone like [Dania] if they were not so privileged … I love [Dania] to bits; we have a good laugh together and enjoy many simple things together. But the stresses are still there.’
Emelia received 20 to 25 hours of support per week, which she said left her little time to work and to have a social life or time to herself. She had moved to a regional area hoping to find a supportive local community.
‘Here I am trying to live a "village life" as much as possible – where [Dania] can be known by many people locally and there are many people who will chat with her and many animals to visit in the course of a week.
‘I just wish that the "village" could be held responsible for caring for the person with disability, not just next of kin. The way that the responsibility falls to the parent, partner or sibling doesn't make sense and puts too much pressure on an individual. No wonder some people build up resentment towards those they care for.’
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.