My life with spina bifida

Posted on 31 August 2015 by Peter Johnstone

This week we're taking a closer look at spina bifida, to dispel myths, highlight key resources and hear from those living with spina bifida.

Volunteer Speaktank speaker Peter Johnstone is a happy, easy-going guy who teaches young people with disability how to record and edit videos. Peter shares his experience of living with spina bifida. 

I was born with spina bifida, which is known also known as a neural tube defect. This means that the spine doesn’t develop properly and the neural tube breaks and sends cerebellum fluid around the body to places it really shouldn’t be. In some cases, this can cause fluid on the brain, resulting in brain damage.

If the fluid is left to build up it can be dangerous, so like many others with spina bifida, I had an operation to insert a device called a shunt. The shunt does exactly what it sounds like: ‘shunts’ the fluid out of harm’s way. In my case, out of harm’s way means keeping the fluid away from my heart, according to the doctors. 

As a result of spina bifida I am paralysed from the waist down. I have no sensation below my waist and nothing functions in the way it was designed to.

I get around in a manual wheelchair which assists with the management of bodily function, matched with the medication I use and several operations to keep my system working as it should, which gives me greater independence. 

Advances in medicine and technology over the years have meant there are more options for me in terms of what I can achieve. At times I have had to have vigorous discussions with doctors about what I would like done to me opposed to what they would like to do. We have now found and equal playing field and they allow me to choose. 

As a child, I went to a specialist school where I spent three years before transferring to a mainstream school. I was a pretty normal kid who lived at home and led a fairly integrated lifestyle. My disability and my wheelchair were innocent to me, and looking back, I am glad they were.

It wasn’t until my teen years that I became more aware of my disability, but this didn’t stop me doing anything. After my school years, I completed a Diploma of Professional Writing and Editing. I still use these skills today in my voluntary work with Yooralla’s Learning Hub, SpeakTank! and various television shows with Channel 31.

Volunteering allows me to lead a meaningful life while also giving me the flexibility to take time out and have ‘arguments’ with my body – which I generally win!

Author profile
Peter JohnstonePeter Johnstone teaches young people with disability videography skills at Yooralla's Learning Hub. Peter has been public speaking for many years in the community, at Yooralla staff inductions and also to university students, where he openly shares his experiences of living with spina bifida. “I enjoy interacting with people and answering any questions they might have about living with disability, from my childhood through to being a teenager then as an adult,” Peter says. Peter is passionate about car racing of all kinds– especially his team Holden.


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