Jamal
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 might be paralysed, but treat me like you treat anyone else.’
Jamal, a First Nations man, broke his back playing football when he was a teenager. He’s now in his 40s and living with quadriplegia. Jamal uses a ventilator and an electric wheelchair, and has a complex care routine.
‘Ever since my accident, I have been my own guardian,’ Jamal told the Royal Commission.
After his injury, when Jamal was in his early 20s and living in a regional town, he continued to go out with his mates.
‘One of my mates from school, we’d go night clubbing at 12.30 until four in the morning. Instead of going back to my home to get back into bed, I’d just go to his place … I’d have my doona there, my heater and my overnight bag, and I’d just sleep in my electric wheelchair. I’d just tilt it back like a La-Z-Boy.’
Jamal taught his mates how to use his ventilator and clear his lungs so that when he went out with them, they knew how to make him comfortable and safe.
‘It made you feel normal that you could go out to sporting games, do anything, and they were willing to do it, too, and all that. Even when they had children, their wives and all that, and it just made you feel normal.’
About five years ago, Jamal moved to a city to be closer to specialist care. He moved into a group home run by a private provider. There was little privacy.
‘I didn’t like it because when you go into the lounge, you’re sharing it with all the other clients and family, and you can’t watch what’s on the TV because other clients are watching TV or they’re playing games.’
Jamal said the staff were inexperienced. When a wound became septic, he had to explain to staff how to treat it.
‘I was managing a wound and all that myself.’
A few years ago, he moved into a self-contained unit in a facility with a large number of elderly residents. There were no other people with quadriplegia.
‘When I do get up with my electric wheelchair and go out of the unit, all I see is other clients and staff members down the corridor, and it makes you feel like you’re not normal.’
Jamal says the staff are so inexperienced in his ventilator and bowel care, he’s reluctant to leave his room. He spends most of his days in bed.
‘The last time I went out [into the community] was early 2019.’
One day, the fire alarm went off and staff evacuated the facility.
‘And I told them, I’m in the middle of my care. They’d say, “You still have to go out”.’
Jamal said the staff took him to the front gate and by the time he was allowed back into his unit he was ‘lying in faeces’.
Jamal is applying through the NDIS to move into his own house with fully trained support workers. His care provider has already modified a house and installed his television, but Jamal said he can’t move in until the NDIS agrees to fund the support he needs to be safe.
Jamal needs an experienced nurse with him at all times to keep his lungs clear. He said the package doesn’t provide enough staff for him to be able to safely go out into the community.
‘It makes me feel normal [when] I can still enjoy things I want to enjoy.’
When he spoke to the Royal Commission, Jamal was still negotiating a suitable NDIS plan.
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.