When I was three I developed severe asthma. It was bad enough for me to be put on corticosteroids even at that age. From then on my life became rather different from how it might have been if I’d remained the sturdy, healthy child I was up to then.
I don’t remember not having asthma, not really. Back in the sixties the treatments for asthma were limited, and the disease far less common. Even then it was known that corticosteroids stunted a child’s growth, so there were long periods in which they were withdrawn and which I spent wheezy. In most of my memories I am wheezy: it was normal. Some of my earliest recollections are of waking in the night unable to breathe and crooning ‘ay-lelooly’ over and over as I struggled for breath. My dad even had a term for it, saying he heard me ‘coughing and aying’ in the night. It might sound strange to contemporary ears that he and my mum weren’t at my bedside comforting me at such times, or the doctor called out, or… but this was the sixties, we had no phone and a car that didn’t work, and asthma was normal in my family. My dad had it, and his dad, and his dad before him. You just put up with it.
And that wasn’t the only disability in the family. My granddad – the one who had asthma – had one paralysed arm caused by polio in his twenties. It resulted in him being invalided out of the Navy, after which he worked at a variety of jobs, including gardening, one handed, until he began work as a postman. The fact that ‘Dandan’ had a paralysed arm wasn’t something we kids even thought about much. He never used to talk about it. He rode a bike, gardened, looked after himself after my grandmother died, without any outward sign of difficulty.
Then there was my mum’s deafness. This wasn’t so apparent when we were children, but her hearing worsened until she had lost all hearing in one ear by the time we were teenagers. We got used to her saying ‘eh?’ all the time. When she finally got a hearing aid for the remaining functioning ear she was stunned at all the things she hadn’t been able to hear up to then!
Lastly there was my aunt. Auntie Beryl, my mum’s sister, had polio as a child and walked with a limp thereafter. On top of that she had very bad sight from an early age and was diagnosed with retinitis pigmentosa, which eventually led to her becoming registered blind. Auntie Beryl’s disabilities worsened as she aged, with the retinitis pigmentosa being progressive, and the strain on her good leg eventually damaging her other hip.
Because my asthma was so severe, and because I then developed a form of pneumonia, I was admitted to hospital when I was six, and a year later I was sent to a special boarding school for sick kids. In both places I came across children with other disabilities and illnesses, from cerebral palsy to spina bifida, and from diabetes (far more problematic in those days) to coeliac disease.
It’s because of this background that disability is one of the issues I feel passionately about. It has been present in most of my writing, published or not (oddly, The Legacy is the exception to this!). It’s present in The Dream, and it’s very much to the fore in Angelica Died, which I’m completing right now. If The Legacy was my paean to all my favourite childhood Enid Blyton and C S Lewis books, and The Dream my homage to New Zealand, then Angelica Died is my tribute to the people who cared for me as a child in those institutions. They were, in fact, both good and bad, but for Angelica Died I’ve concentrated mainly on the good ones.
Today is World Cerebral Palsy Day. One of the minor characters in Angelica Died, a child of fifteen, has cerebral palsy. He is based on a real boy of fifteen that I knew in hospital. I don’t know his whole story; I only know what I saw as a child of six/seven. What I remember is very sad, so I’ve tried to give the boy I remember as almost voiceless more of a voice, based partly on what my mum recalls about him. I hope I’ve done him justice.