Jonathan
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.
Jonathan has hemiplegia, which is ‘one sided cerebral palsy’. The impacts of it vary from day to day, but generally it effects his ability to walk, causes medium to severe pain from the neck down on one side of his body, toileting issues and stomach problems. He requires frequent professional massages and physiotherapy appointments.
Recently, an NDIS physiotherapist suggested leg casts would help improve Jonathan’s spasticity (a condition in which muscles stiffen or tighten, preventing normal fluid movement).
Jonathan explained that after the cast is removed, ‘the foot’s movement ability is tested by pushing the foot in a variety of ways’. The physiotherapist records the measurements and the progress.
‘The last time the plaster cast came off, I was very sore … the two physios pushed and prodded my foot to get the measurements they wanted, which was very painful,’ Jonathan told the Royal Commission.
By the time he got to the car he could barely walk. He rang the NDIS physiotherapist who ‘seemed to think there was no issue’.
The pain was so bad Jonathan visited his regular physiotherapist who he’d been seeing for more than 10 years. There was nerve damage to the foot, most likely caused by the NDIS physiotherapists ‘prodding and pushing for their own measurements’.
At the next appointment with the NDIS physiotherapists, Jonathan was going to challenge them but lost his nerve. He ‘mentioned it in passing and said it wasn’t a big deal’.
One reason Jonathan was reluctant to say anything is because ‘there aren’t many places for people with cerebral palsy to go’.
‘When I mentioned it to one of my disabled friends, he was shocked for me and very supportive. He and his wife encouraged me to not go to the provider anymore.’
Jonathan is not interested in doctors and physiotherapists taking measurements so they can evaluate how close he is to the ‘norm’. He needs them to act in his best interests.
‘I have cerebral palsy, and I’m not going to stop having it. Medical professionals need to stop trying to “fix” us. Instead, they should have an open dialogue with us to help us achieve our goals, not their goals.’
‘I have been pitied and stared at for having a disability, and judged for getting NDIS funding, as I'm sure others have. I wish none of this on the next generations 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.