Living with cerebral palsy: 'It just means having a different operating system'
Public Interest Journalism funded through NZ On Air
Approximately 10,000 people in New Zealand live with cerebral palsy - a physical disability that affects movement and posture. Yesterday marked World Cerebral Palsy Day. Te Rito journalism cadet Will Sangster, who also has cerebral palsy, spoke with rapper Benza about living with the condition.
Rapper Ben “Benza” Tuimaseve lives life in the key of CP - cerebral palsy - as he puts it.
The 34-year-old, from South Auckland, has cerebral palsy and left hemiplegia, which impairs his motor skills on the left side of his body.
“It just means having a different operating system - like Windows for PC, we have CP and there [are] so many versions of that,” he says.
Tuimaseve wants to raise disability awareness and reduce the stigma among Pacific peoples.
“For our Pacific people, historically, disability has been seen as a curse.”
He honoured yesterday’s World Cerebral Palsy Day with a freestyle rap.
“Coming to you in the form of rap. Clap twice because I’m that nice. But today, make it three - for everybody living the life in the key of CP.”
Cerebral palsy is a disability that often affects muscle movement, communication and motor skills.
On the voluntary NZ Cerebral Palsy Register, 26 per cent (about 368 people) of the 1416 people are Māori and 12 per cent (about 170 people) are of Pasifika descent.
National population averages for Pasifika - 8 per cent - and Māori - 17 per cent - are lower.
The Cerebral Palsy Society of NZ is working with the NZCP register to gather more data in this area.
Tuimaseve elaborates on his disability in a video he made to promote World CP Day.
“Cerebral palsy, in a nutshell, is when your brain sends a message like: ‘up to?’ to one side of your body.
“And [the other] side of your body usually ghosts.”
Born in New Zealand, Tuimaseve hails from the villages of Hakupu in Niue, Lufilufi in Samoa and Palmerston in the Cook Islands.
He is also a talented athlete; representing New Zealand at the Tokyo 2020 Paralympic Games in the shot put.
Starting his shot put career in late 2016, he went on to place 9th in the men’s shot put F37 at the Tokyo Paralympic Games - throwing 13.31m to set a new Oceania record.
He says the sport has been an adventure and discovery of himself and cerebral palsy.
“Tokyo was a mean reward of hard work, support and what happens if you don’t give up.
“The highlight was throwing amongst the best in the world at a tasty stadium and seeing the worldwide spectrum of disability.”
Tuimaseve has also had a passion for dancing since he could remember - describing it as a place to escape bullying.
“A place where I feel free for a bit and can express myself when I can’t find the words.”
Hero image: Te Rito journalism cadet William Sangster has created a video to raise awareness of the condition known as cerebral palsy in celebration of World Cerebral Palsy Day. Photo / Supplied