I was handed money for being disabled a few times when I was a small child. It was always a surreal experience. You would think that for a child any money is good money. I instinctively knew that this was money from people who felt sorry for me, who wanted to ease my burden. That they almost always followed it with a saccharin smile and the words: ‘May God be with you’, gave me a very uneasy feeling. It cemented a connection between religion and personal charity that was misguided at best and incredibly patronising at worst. What these people didn’t know is that I love my life and my disability has never got in the way of a good life.
Please don’t get me wrong, the idea of giving is a wonderful one. It can change lives. The thing is, I didn’t need money as a child. My parents weren’t wealthy then but nor did I want for anything. My father has worked very hard all of his life to provide everything we need. One of my favourite memories as a child is of him carrying me inside from the van when he thought I was asleep. I peeked out through one eye to view the most beautiful starry sky. I also remember him holding me in the sea and alerting me to a group of small fish in front of us that were dancing on the surface of the water. One of my first words was pen. I used to grab at the pen in my Dad’s front pocket when he held me.
My Mum was so much fun growing up. We would laugh together all the time, which was to become invaluable during periods of my life that were frankly horrendous due to painful surgeries and medical complications. I can’t begin to describe the love and support she gave me during those times. My Mum is also the best cook in the whole world. This is an indisputable fact.
Both parents provided us with a good moral compass and a stable home environment in which to grow and flourish.
I also have three younger sisters, all of whom I have always got on with very well and who were and are the best company. They are seriously awesome people.
Ours was a happy, stable and fun household. I was a happy and well adjusted kid. Given all of this, I found it shocking that anybody would feel sorry for me and worse, that they would feel the need to give me money to try to compensate for my terrible life. It simply made no sense.
Since my childhood in the 80s and 90s, there has been a huge leap in knowledge and understanding of disability in the wider community and I have certainly noticed a difference. There is still the propensity for people to feel very sorry for me, but I haven’t been handed money for being disabled for many years. Pity. I could use it now!
There are still the street preachers who tell me that I can be healed if only I believe in Jesus as my personal saviour and who shout after me when I keep wheeling that if I believe hard enough, I can be saved. The idea that I’m not doing enough to please god yet in order to be ‘healed’ just solidifies the idea in my mind that if god does exist, he’s a bit of a bastard.
Far from needing ‘God’, as many people might assume would be the case for a person ‘like me’, I consider myself to be very fortunate. This though is, ironically, due to a combination of accident of birth, ridiculously wonderful family and friends and a lifelong curiosity about the world. I’ve also worked hard to come to a place of understanding and acceptance. I did that myself without the need to tell stories to explain away things that I don’t like.
I have heard many theories based on religion and/or spirituality as to why I was born with Spina Bifida. People like to be able to explain how and why bad things happen in a way that satisfies them and is compatible with their own belief system. Some of the explanations have ranged from the bizarre to the ridiculous through to the downright offensive. I won’t go through them all here. I’m sure you can probably imagine. That I’ve been put on the Earth to teach people various things about life seems to be a common one. Karma for bad actions in a past life is another. That I don’t believe any of these ‘theories’ should come as no surprise to you now.
I was born with Spina Bifida and hydrocephalus probably because of a lack of folic acid. It wasn’t well known or publicised around the time before I was born that taking a simple vitamin supplement can reduce the chances of having a baby with Spina Bifida by a really significant margin. There are other factors that may lead to neural tube defects like Spina Bifida such as genetic predisposition and harmful chemicals in the environment during the development of the foetus. These are scientifically proven facts. Anything else is a story used in order to comfort people and to shield them from reality. This concept is anathema to me. None of these stories have ever made any sense to me at all nor have they been of any comfort.
Rational thought is comforting to me. Science makes sense. I look forward to the day when we are grown up enough to let stories be stories and for the pursuit of truth to stand on its own as our greatest comfort in a vast and expanding universe.