Read the Introduction
Until I was 36, I lived in what I thought was the normal world. I was a solicitor with a happy marriage, a healthy toddler and a nice house. Then in 1999 my second child James was born at 25 weeks, with extensive brain damage, and I entered the disabled world.
It began with a four-month fight in hospital for James's life. When he survived, we pressed his consultants to tell us what he would be like – what he would be able to do or not do. They could only guess.
When he came home, we faced a slowly emerging picture of a boy who couldn’t walk, talk or use his left hand. He was also handsome, clever and funny. Everyone who cared for him fell in love with him, and he fell in love back. As he grew older, he began to show signs of unusual behaviour. He hated to leave the house except to go to school. He was only happy when watching clips of Teletubbies over and over again. He would eat nothing but ham sandwiches and crisps. We overlooked these foibles, uneasy about what they might mean. All small children had tantrums and food fads, didn’t they? But the behaviour crossed the line between the normal and disabled worlds and heralded another devastating diagnosis: James was severely autistic.
Before long he began to attack us on a regular basis. He separated his food into piles of different things before eating it. He also ate his own faeces. He woke at 4am almost every day and shouted for hours. We became stupefied zombies.
When James was five, we sat in front of his consultant and wept at the unbearable lives we now led. She referred us to the social care department of Birmingham City Council, and so began the final transformation of two confident professionals into two broken people who were tremblingly dependent on the state to save them.
What followed is the reason I have written this book. I was so shocked by the inadequacies of the system that greeted us that I felt compelled to do something about it. I have taken a deep breath, put my privacy to one side and given a personal account of my family’s experience, to try and raise awareness of what is going on.
In her foreword, Rosa Monckton has referred to what happened to us. But we are not alone. All over the UK, parents of disabled children are feeling tortured in their homes by lack of sleep and respite, and by the sheer unremitting responsibility they bear.
Their children aren’t getting the physiotherapy they require, so their limbs are seizing up, leading to a lifetime of immobility and pain. Siblings are losing their childhoods because they're being deprived of parental attention and basic life opportunities, or turned into little carers. Some women have even been driven to kill themselves and their children out of sheer despair and exhaustion.
Throughout the book I have referred to normal or ordinary people, as opposed to disabled people. This isn’t very politically correct, because the philosophy in the disabled world is that there is no such thing as normal – there are just people, with their different needs and abilities. I agree with that philosophy. I see it as an extension of the view that it doesn’t matter what language you speak, how you dress, or what colour your skin is – you are a human being.
However, in talking about children who are as extremely disabled as James, I had to find some context that everyone could easily understand. That is what mattered, not the semantics of disability.
Although I have changed some names at the request of the people described, everything in this story really happened.'
© Jane Raca 2012