It's not just all about the kids!
I keep a close eye on what is going on in the world of faith and disability and it worries me that the majority of what we see seems to be about families with disabled kids, books are written training days are hosted etc by either parents of disabled children or on behalf of the parents of disabled children , all of which focus on disability from a parental view point.
Let me tell you a little of my own journey from my own perspective, a perspective that focuses on coming to terms with my disability. My version of events is very different from the version my parents would tell you. Does that mean my parents version is not true? No, of course not it simply means they were walking that journey in their own shoes. There was a constant tension throughout my childhood as my parents, out of the best possible motivation, wanted to wrap me in cotton wool and keep me safe and as I grew I was left simply feeling stifled by that cosseting and wanting to break out, to push the boundaries of what the medical profession were saying I would be capable of.
I remember as a child of around 8, I had just come home from hospital from one of many operations, my mates were outside playing football and I was not being allowed to join them. I remember standing in the kitchen overhearing a conversation between my mum and gran in the sitting room, my gran was telling my mum that if she clung on too tightly she would lose me. As I reached my late teens my gran was to be proved right, my parents worried about me and that the life choices I was making might be beyond my abilities, the more they forbid me, the more I rebelled against them.
My late teens and early twenties saw a period of estrangement between myself and my parents, happily that is long since resolved but I can't help but wonder if it could have been avoided.
Back in my childhood my grandad perfectly understood and tried to intervene. Grandad was a very practical, stoic Geordie, a train driver in the age of steam.
One winters day, again having just come out of hospital, I was not being allowed out to play in the snow with my friends. Grandad waited till gran had gone out, he put a stool next to the kitchen bench, stood me on it and told me too watch out the kitchen window. I watched as he brought 4 sheets of plywood from his shed and laid them on the kitchen floor, he went back outside and wheeled in to the kitchen four barrow loads of snow, placing them on the plywood, he then came back in and made me a snowman right there on my grans kitchen floor. He passed away very shortly after that some 50yrs ago but that memory has sustained me through so much.
So please can we have a more balanced approach to disability in the church we need to hear far more from disabled adults who have lived with their disabilities from childhood, people who have had to fight to achieve their full potential when very well meaning adults have tried to wrap them up in cotton wool.
Remember that wrapping disabled children too tightly might simply be storing up trouble for the future, please can we have a more balanced approach, yes let's ;listen to the concerns of the parents of disabled children but when looking for advice it is important that we hear from disabled adults themselves.