In the 1950s, doctors were white-coated gods who would pronounce on a disabled child’s future and set the course for the rest of their life.
The well-rehearsed diagnosis would go something like this:
“This child is spastic. Take her home. Forget about her. She’ll never be any good. You’re wasting my time, your time and everybody else’s.”
This was the verdict given to the parents of Dr Lin Berwick MBE.
“My mother was absolutely gutted by this experience, and she cried all the way home, from Carshalton to Poplar. And then her tears turned to anger, and she said, ‘How dare this man say that you’re to be taken home and forgotten about. We’re going to try and help you to make your way in the world,’ and basically that’s what she did.”
In Lin’s case, her parents decided to fight the prevailing view of the medical establishment. Not everyone was as lucky. And it was hard to go against this hopeless orthodoxy.
Some parents of children with cerebral palsy accepted the medical advice to put their child into an institution and have another child.
This was the case for Tony Wilson. He was brought up in the so-called subnormality ward of a hospital with many other disabled people.
The difference between Lin and Tony’s life chances as a result of these decisions was stark.
For Lin, she lived with her parents, went to school, got a job, got married, became a writer and lay preacher.
For Tony, he had an unrecorded childhood with no family snapshots. He had few Christmas and birthday presents. He received a segregated education, was regarded as ‘unfit for work’ and was unable to marry the love of his life because they lived in different residential institutions.
It wasn’t until he was in his 60s when he applied for a passport that he even knew who his mother was. He also found out from his birth certificate that for his whole life, he’d been celebrating the wrong birthday.
Jill Mahler’s experience echoed Lin’s:
“I don’t even know how old I was when I was diagnosed as having CP. Maybe it was obvious at birth: but, you know, the doctor just said to her ‘Well, forget about her. Put her in a home and go ahead and have another baby.’ But, as my mother was quite a cussed person and said, ‘No way’ etc and she kept me.”
The reality of a subnormality ward hit Alan Counsell hard. Before becoming a writer and teacher, he got a job working on the wards:
“I was a therapy assistant, so I used to work with occupational therapists, physiotherapists etc. and became a nurse in a subnormality hospital. And, er, that frightened the life out of me, because, had the authorities had had their way in my early years, that’s where I would have ended up, and that was terrible…
“In the end, I got into trouble one day, big trouble, and I was absolutely furious because of my own experience.
“I couldn’t stop thinking that had the education authorities have had their way, when they said I was mentally defective, I could have ended up as a patient in that hospital. And that was a rather daunting thought… “They had a block, a ward, called ‘H Block’, and, you know, they had A, B, C, D wards. H was a ward for ‘low-grade’ patients. That meant their intelligence was very low, and they also had behaviour problems. Many of them had to be restrained for a time. Every student had to do at least one month on H Block, and my first day there I just lost it. I went into orbit, oh, terrible…
“We had to feed the patients, and the staff on the ward got a main course and a dessert and mixed them both together and fed it to the patients.
“I couldn’t do that. I kept thinking, ‘This could be me.’ You know, ‘This, this could be me.’ There’s no way I’d want my food like that. So, I refused to do it…”
Being written off in that way seems extraordinary now. But it was common in the 20th century when childbirth was an especially precarious business and knowledge of cerebral palsy was still in its infancy.
For people with cerebral palsy, their birth story is vital. So much follows from it: seconds without oxygen can lead to a lifetime of disability. That’s why, like Lin, Antonia Lister-Kaye knew the story of her birth:
“I just plopped out. It’s almost as if I couldn’t bear to be there any longer… And I think they thought I was dead. Anyway, the doctor did arrive, late, and he said, ‘Well, this thing, this thing’s alive, I think.’
“I was born in Cardiff in 1931: 22 November, a gloomy month to be born in, at the height of the Depression.
“My father was in the Army, and I was actually born, practically on the barrack square… I was very early, and my mother didn’t realise it was all so imminent, and she’d been to an Army cocktail party. She said to one of her friends, ‘Oh I do feel peculiar,’ but I wasn’t due for another 2 months.
“No doctor, no nurse… It was a bit ballsed up, and that’s why I got this slight disability. My mother was a Christian Scientist, and she didn’t like doctors. I think it was explained to her that we must at least have a nurse, and my father got a chicken incubator from his brother, who was a farmer, who rushed to the house, and I never went to the hospital. I was kept in an incubator, a chicken incubator, in my father’s study, but my mother didn’t see me for weeks and weeks, because she was quite ill, and I don’t think she wanted me anyway. I mean, I know she didn’t.”
Antonia’s sense of rejection, of being forgotten, is palpable:
“I can’t remember her ever cuddling me. If she had to have a baby at all, she wanted a boy: an athletic boy… And, you know, she got this miserable mewling, puking, slightly distorted object. I think that’s how I came to be how I am.”
“When I was 5, they buggered off to India, my parents, and my mother refused to take me or my sister, so we were left in York with my grandmother, my maternal grandmother, who I hated… And they went off to India to have a jolly time in Agra: gin-slinging and pigsticking and polo-playing, but I was left a very furious, abandoned little girl of 5. It was a hard childhood, as all disabled childhoods are I think…”
David Mills also lacked decent medical care when he was born:
“I was born in 1942 at my grandparents’ home near Glastonbury in Somerset. It was wartime. Because there was no facilities at that time, it had to be a home delivery, and my mother has always said that for the first 10 minutes after I was born, I was perfectly all right, but after 10 minutes or so, I stopped breathing. Fortunately, they revived me after 5 or 6 minutes, I think, but it was that time that I sustained some damage to the brain, because of the lack of oxygen, the cause of my cerebral palsy.
“My father was serving in the army. He was present when I was actually born, but he had to return to serve in North Africa and Italy, and he didn’t see me again until after the war. We think that my poor mother was left at home to cope as best she could with a baby who obviously was not developing normally.”
Joan Ross’s parents were given a bleak prognosis:
“My mum was told very bluntly that I had brain damage, and it was highly unlikely that I’d grow up to recognise my parents, that I would never walk.”
This sort of confident prediction was often carelessly given by doctors. But their words would haunt parents. For some, it made them fight harder for their child, to prove the medics wrong. But how many parents felt hopeless in that moment? And how many, years later, got to tell the doctor that they were wrong?
Joan’s autobiography, I Can’t Walk, But I Can Crawl, is a defiant response to the doctor’s assertion.
The quotes in this blog come from Speaking for Ourselves, the oral history of people with cerebral palsy.
Alex White writes 
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