Cerebral palsy, a physical condition that affects movement and communication
William Horwood is probably best known for his Duncton Wood books. But for me, his novel Skallagrigg, based on his experiences as a father of a child with cerebral palsy, is his masterpiece.
(more…)It gets the most regular and deepest and most moving correspondence. It was the book I was most pleased to write. Skallagrigg is different; I feel it’s an important subject.
I was once introduced at a webinar as “Alex White who has been talking about the language of disability before it was fashionable.” By which they meant until the webinar made it so!
Fashionable or not, I believe that words matter, but language changes all the time.
(more…)
When I joined Scope’s disabled graduate scheme in November 1994, I knew very little about cerebral palsy.
I joined the UK disability charity at a historic time, the Monday after it changed from The Spastics Society to Scope.
Early on, I met Bernard, an older man with cerebral palsy who was looking for help to write his life story. From my work for the York Oral History Project, I knew the power of oral testimony. This encounter with Bernard made me realise how important is it that history hears disabled people’s voices.
(more…)
Alison White (no relation) is a mother of a child with cerebral palsy. Her Letter to Louis, published by Faber, is shocking about the callousness or perhaps carelessness of people’s reactions to a mother with a disabled child.
(more…)
In later life, Bill Hargreaves found a new kind of equality:
“What, then, has growing older meant to me? Firstly, a much fuller and more interesting life than I could have imagined. Secondly, because most people of my age suffer from, or are beginning to suffer from various physical ailments and joint and back difficulties, there is now no difference between us. I am as able-bodied as they are, perhaps even more so, for throughout my life I have had difficulties in moving, which they are only now coming to terms with and cannot understand why I can be so cheerful!”
(more…)
After visiting a school for pupils with cerebral palsy (CP), Bill Hargreaves said:
“It’s all very well giving people a piece of paper to say they’ve got an examination pass, but have you told them how to deal with buses? Have you taught them how to use an outside phone? Have you taught them how important it is to get the work done on time? Academic learning is not enough.”
(more…)
One of the common misconceptions about disabled people is that they are somehow not sexual beings. The reality, of course, is that relationships are just as important to disabled people as they are to everyone else.
(more…)
At the first Annual General Meeting of the National Spastics Society in 1952, Bill Hargreaves asked parents to think beyond schooling their disabled children. What would happen next? How would they earn a living?
(more…)
Valerie Lang MBE found the medical label of cerebral palsy (CP) followed her into her education.
“The diagnosis was not helpful. They just followed the book, which said cerebral palsy included what was then mental handicap, and therefore they were constantly telling my parents I was ineducable.”
The doctors’ pessimistic prognosis about cerebral palsy made it difficult for parents to find a suitable education for their children.
(more…)
Michael Wilkinson’s childhood experience of operations and long stays in hospital (in an attempt to make him walk) were typical of the 1950s:
“I had 4 operations altogether. Before that I used to crawl everywhere. After that because my legs were different, I couldn’t crawl again for ages afterwards… It was autumn and I was getting really anxious that I was not going to get out before Christmas.”
For many children with cerebral palsy, the medical obsession with walking ‘normally’ was the cause of much frustration and agony.
(more…)
Alex White writes 