In the eye of the beholder
Sean O’Kane has spina bifida and is fed up with not being treated like a normal person. Because, as he’s quick to point out, he is a normal person.
The 51-year-old Goonellabah man knows that often other people with spina bifida are the only ones who can truly understand the stigma and challenges associated with this ‘birth defect’ and is keen to connect with other people.
“It might just be a casual meeting over coffee or just a phone call, or we might be able to establish some sort of group if there’s enough of us,” he said. “In the last 12 months I have joined the online SB group Spina Bifida Connection and have met a wonderful group of people. I have learnt more about SB in the last year than I have in 50 years of seeing specialists, doctors and specialised nurses. You cannot beat real, first-hand experience.”
The term spina bifida means a split or divided spine. The spectrum of spina bifida is wide: some people may be wheelchair bound, others may have a learning difficulty, some may experience incontinence, or a combination of these.
Spina bifida may manifest as a severe disability while for others, like Sean, there may be few outward signs of the defect and they can live ordinary lives. Sean has a tethered spinal cord, which means as he ages he may experience a loss of sensation in the legs.
While you can’t always identify the defect, Sean believes there must be quite a few people living with spina bifida in the Northern Rivers.
“Downtown in Lismore I’ve seen a couple of women who I suspect have spina bifida, but I can’t actually go and ask them in case they don’t!” Sean laughed. “For the majority of my life I thought I was alone, but now I realise that there’s people with spina bifida everywhere. They say one in 2000 babies is born with spina bifida but the Spina Bifida Association of NSW only has 350 members. There’s four million people in NSW so the maths just don’t add up – where are all these people?”
Sean said one of the most frustrating elements of living with spina bifida was the attitude the mainstream health profession has towards this neural tube defect.
“Personally I feel a little sting when I hear people being interviewed about their opinion on folate in bread and they agree because it might prevent something ‘bad’ or ‘wrong’. Then there’s the ad on TV for a pill to prevent the likes of SB – we’re just not wanted in society,” he said. “There is a general push for termination of foetuses with SB, and there is so much anecdotal evidence of parents who have had to fight against that attitude, and stories where time and time again parents are just amazed at their SB children.
“The diagnosis from doctors is always so negative – they’ll say the child will have paraplegia or water on the brain. While that’s certainly a possibility often the child is very resilient and none of those negative things happen and they go on to live full, wonderful lives. I get annoyed at that attitude of doom and gloom and there are parents all around the world being traumatised and battling misinformation. Spina bifida is simply not worthy of that blanket rule of termination.”
As he rightly points out, it is only people without spina bifida who see it as a disability.
“For us, we’re just born that way,” Sean said. “We’re just people.”
For more information or to have chat with Sean, phone 6624 6967 or email sean@clearcentral.