This morning over breakfast in a hotel lobby, I found myself overhearing a bizarre exchange between 2 men, and I was one of those being discussed.
The conversation related to the BBC’s “The One Show” last night. There was a piece on sailing which concluded with Matthew Pincent interviewing quadriplegic Hilary Lister. Hilary is attempting to repeat my circumnavigation and sail around GB. She tried last year but was defeated by bad weather and kit problems. The piece on TV, although stating she hoped to be the first female quadriplegic to complete the voyage, it made no reference to my trip in 2007. “So what?” you might say. Well, for no other reason, by ignoring what has gone before, it is an insult to all of those who made it happen; sponsors, crew, friends and family. There is also a danger that history gets re-written and, with the journalists always keen for stories of “the first”, they are allowing themselves to overlook the facts.
But then I hear this guy in the hotel say to his colleague, “I’m sure some guy already did that last year”. To which his friend replies, “it’s not the same, that guy could move his arms”.
“Move his arms!!!” They were referring to me. I was dumbstruck. These two, fit, healthy guys, discussing the merits of two quadriplegics, and just because I have 25% arm mobility (0% hand mobility), that somehow made my achievement less “newsworthy”.
And then it kind of dawned on me that people have no real comprehension of quadriplegia. Quadra means 4 in Latin. It is when all 4 limbs are effected. I broke my neck at the 5th cervical verbrae, and it paralysed my triceps and all my wrist, hand and finger movement is non-existent. All the movement I have above my chest is a severely reduced bicep function and no feeling at all in my arms and clawed hands. But because I have adapted a trick movement which allows me to move my paralysed arms around, it has, in the minds of some, made me “less disabled”.
I know Hilary well, we are friends. Like me, she hates being referred to as courageous or brave. We are just getting on with our lives the best we can in difficult circumstances. Even though I can just about “move my arms”, like Hilary, I can not get out of my chair unaided, I can not get onto a bed unaided or go to the loo unaided; being a quadriplegic is bloody tough and it makes you reliant on others to exist – it is that which I hate the most and, I would guess, so too would Hilary.
Yes I am lucky, having a bit of arm movement does allow me to steer my own wheelchair and to put food in my own mouth, but it is not without pain and discomfort to do so. Unfortunately for me it would appear that little bit of movement makes my story less impressive – 109 days away, visiting 51 destinations and sailing 1,500 miles (all without self-steering and using my teeth and limp arms to pull ropes.
So when I hear people who don’t know the true meaning of quadriplegia suggesting that someone who can move their arms is “less disabled” than someone who can’t, I do get quite upset. This isn’t a case of “she’s more disabled than you”, it’s about recognising the strength of the human spirit which drives us, not the strength of our limbs.
In case you are wondering, no, I didn’t introduce myself to the men, I was too saddened by what I heard.
