Disability rights, disability oral history
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.
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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.
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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.
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As a lifelong member of the National Union of Journalists (NUJ), I believe that writers and photographers should get paid for their work. I also think tech giants shouldn’t be able to scrape our creative work to make huge profits out of Artifical Intelligence. Controversial, I know, but that’s why people come (or don’t come) to this blog for my ground-breaking, game-changing, earth-shattering opinions.
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The retirement of my friend and colleague of over 30 years, Penny Dickinson, has brought back fond memories of one of my favourite projects that we worked on together, In The Picture.
In The Picture was an innovative, 3-year Big Lottery-funded project, created by the wonderful Susan Clow,. Aimed at the children’s book world, In The Picture wanted disabled children to find themselves represented in the books they read.
Since 2006, the impact from this project continues to be profound.
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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!”
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Independent living is what non-disabled people usually take for granted: living your life, deciding what you want to do and making it happen.
For many disabled people in the twentieth century, living independently was a distant dream. It often came after many years of struggle, and living in institutions, as Pauline Johnson recalls:
“Now that I am older, and I have done it since… since early forties, I feel that to lose so much independence all those years, that you could have lived independently and didn’t…
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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.”
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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.
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Alex White writes 