Speaking for Ourselves: experiences of ageing for people with cerebral palsy

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!”

Medical interventions

Dorcus Munday found that past medical interventions began to cause her problems in later life:

“There wasn’t any thought given to posture, which a lot of thought is given to posture these days – how you sit in your wheelchair, whether you’re comfortable in it, whether it’s comfortable to you, whether it’s doing any damage anywhere. None of that was even thought about, which I think is why some people with cerebral palsy now have problems because, you know, had it have been thought about we might have been in a bit better nick…

“I’m not being funny but, you know, I get aches and pains now and I think, ‘Oh goodness,’ you know, and which I didn’t get 10 or 15 years ago.

But I’m fairly philosophical; it’s part of the ageing process and some of it is, but some of it is because we had to wear callipers and had to sit in odd positions and do odd things, which were not good, I don’t think.”

Spasms and cannabis

As Antonia Lister-Kaye  grew older, she found that her spasms became more painful, but she never lost her spirit of rebellion.

“My naughty daughter, Frankie, used to get hold of cannabis, this was in the 1970s, and bring it home and smoke it. So I said, ‘Oh hey, give us a go,’ and because I knew people who smoked cannabis in the ‘50s in Hampstead, you know. Well, they do everything in Hampstead before they do it anywhere else. And so she gave me a joint, and I smoked it…

“I’m not a smoker, so I didn’t inhale properly, but I said, ‘God, Frankie, the pain’s dropping out of my fingertips.’

And so she said, ‘Oh Mum, isn’t that interesting? Have another one. I’ll roll you another one…

“And after that, I read an article in The Independent, written by somebody with MS called Liz who lived in Leeds, and she wrote about the marvellous effect of cannabis on her MS, so I thought, ‘God, I must find out more about this lady…’

Residential care

When Judy Smart was a child, her mother had fought very hard to keep her out of institutional care. When Judy’s mother was faced with the prospect of going into residential home herself, Judy found the guilt and  trauma very upsetting:

“‘Put your mum in a residential home, it will be better,’ but I didn’t want to, because I thought I was betraying her. She’d looked after me all my life, and then it got so bad that our doctor came in on a Monday morning and explained that they were going to section her on Friday, but I wasn’t to tell her. Terrible.”

Judy’s empathy for her mother was borne of bitter experience. She knew what it is like to be disabled by society. This is why disabled people’s stories matter.

The quotes in this blog come from Speaking for Ourselves, the oral history of people with cerebral palsy.