Disability advocate on humour, invention and rebellion

Published on 20 December 2020.

In the 1960s and 70s ‘dine and dance’ venues offered a glimmer of sophistication in towns up and down New Zealand.

And, if you were a frequent patron of ‘dine and dance’ evenings at the Hillcrest Lodge Restaurant in Hamilton in the 70s, chances are you would have seen John McIntosh behind the drums four nights a week in the Max Cleaver Trio.

Drums were an unlikely choice of instrument for a young man like John. He was born with scoliosis – a severe curvature of the spine. Typical symptoms include limited mobility and heart and lung difficulties – the type of symptoms that make lugging around a drum kit challenging.

But, John explains, he was a drummer almost from the day he was born on 22 December, 1947.

John McIntosh was born with scoliosis – or curvature of the spine. The Hamilton resident has never let his disability slow him down. But, he admits, as he gets older his disability is having a bigger impact on daily life. “My curvature of the spine is getting worse; therefore my breathing is getting worse. I tire easily and I’ve developed glaucoma…and that’s just gradually getting worse too.”

Encased in plaster from neck to ankle from infancy until the age of three, John spent a lot of time in pain.  A love of music provided much-needed relief.

“The only way my mother could keep me occupied was to prop me up in front of the radio. She noticed I really loved music. As I got older, she’d give me spoons and a couple of pans and I’d bang and crash away.”

John’s parents were his greatest advocates early on. “When I was almost five and it was time to go to school, the doctor said ‘put him in an institution and come back and get him when he’s 18.’

“But my parents said no. He’s going to a normal school; he’s going to live a normal life – which was pretty impossible back in those days. Schools were not set up for children with disabilities.

“I went to an ordinary state school with no provision for disabled children, so I had to make the best of what was available. And I guess part of that – and it’s unique to people with disabilities – is you have to find different ways of doing things. We don’t stick to the normal, because we can’t do normal. So we become inventive. And I certainly did that.”

John also credits his sense of humour for getting through almost every challenge. But there’s a pinch of rebellion too.

After the plaster cast was removed, John was told he would have to wear a heavy metal and canvas brace around his torso for years.

“When I was 15 or 16, I thought I’m not going to get a girlfriend strapped up like that. So I made the decision to get rid of it. I took it off and never wore it again, and in fact – this is not an advisable thing to say – I threw it off the bridge into the river. I didn’t want to ever see it again.”

John McIntosh is one of the stars of our Question Time series made in partnership with Attitude Live. Watch his video where he talks about growing up with curvature of the spine, meeting wife Marilyn and what it’s like growing older when you have a disability. There’s a great demo of John on the drums at the end too.