Tolly and Marg
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.
Around 15 years ago Tolly – he was 19 at the time – had a scholarship to go to university.
Days before his scheduled departure a car ran him over. He spent months in hospital but did not fully recover. Along with other physical issues he now has aphasia.
Tolly told the Royal Commission that aphasia is a relatively common disability but few people know about it.
‘That is very frustrating,’ he said. ‘No-one hears of what it is and no-one is really understanding of what it is.’
Aphasia affects Tolly’s ability to speak, to read and write and to process information. He also has problems with short-term memory.
‘Everyone has got a different kind of flavour of aphasia,’ he explained. ‘And I got the full monty of everything – global aphasia – so I can't talk, I can't read or write. And it is difficult to understand … Normally I just say "Yes, I understand," but I don't.’
When he was hospitalised after the accident, Tolly couldn’t speak at all. He was supposed to receive 24-hour care, but one night he woke up alone. As he struggled to get up he fell out of bed. No-one told his mother, Marg. She only found out when one of the nurses mentioned it in passing.
‘He is not able to say anything and so they don't have to bother saying anything to anyone. And so, I mean, that is horrible negligence, but it is also just the neglect that it is someone who is not able to advocate for themselves so they get lower priority,’ Marg said.
Tolly has had many experiences of neglect since then.
‘Because aphasia is a communication disorder, it is easy to ignore him,’ said Marg.
‘You get really zero help,’ Tolly said. ‘Doctors I believe have no clue about aphasia, zero understanding. And they treat you like a five-year-old … They treated me this way and, yeah. Doctors have no clue. So awareness, that would be a very good start.’
Marg recalled attending medical consultations with Tolly and specialists who just ‘talk and talk’.
‘Well, [Tolly] can't process the language the way they are talking. Or they write things down and give him a bit of paper. Well, he can't read that.’
She believes notes about his aphasia should be at the very front of Tolly’s medical file. Every interaction he has with a doctor or specialist should begin by making a communication plan.
Tolly told the Royal Commission his dream is to read and write again.
‘[But] you get zero help and you don't know what to do. You just have to find it on Google and you just hit and miss. You just don't know,’ he said.
‘And it is an invisible disease and … they just want me to just stare at the wall and watch TV in my life. And I do that, but I want to do a little bit more in my life. And I don't … I don't like it but I do need help. And I tried many times and it just so – it is tiring, it is exhausting and it is just like, yeah.’
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.