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…
Our parents in a general capacity, you know, they think ‘We’ll keep them at home with us for as long as we possibly can. If you think back about the years before that, when you had special needs people going around, they always put them in what they used to call ‘an institution’.”
Becoming (and feeling) part of the community isn’t the same as actually living in the community, as Tony Stamford discovered:
“It’s discrimination from the very places where you don’t expect it. I mean, when my wife and I first moved in here, and other people came to visit us, and they said, ‘Ooh, more disabled people coming to live here. We don’t mind you. We’re used to you, you know, but we don’t want any more. And it wasn’t until I came home half an hour… and then I thought: ‘Well, they don’t really realise how rude that is…”
Tony described how his early campaigning action was thwarted:
“Well, I was involved in that very slightly in the 1970s. I remember my friends and I (2 or 3 of my friends) went up to London, wanting to use the tube in the rush hour.
“Now, we fully expected this would cause ructions, and we would be on the local South East News, saying, ‘All these naughty disabled people are trying to stop…’ but what happened, of course, was the jolly station master, or whatever he was, stopped the wretched escalator thing, and we were bumped down the escalators and of course sent off the station. So, when we rung the press and told them that, [laughs] there was nothing controversial, so they didn’t want to know!”
Independent living isn’t about just living in the community. It’s about being supported to lead the life you choose. Anne Pridmore remembers how, in the early days, she felt almost a prisoner in her own home:
“Well, the district nurse could come any time between 8 o’clock and midnight. It’s not a flexible lifestyle so you had to stay in, and the first time the district nurse came, she came at 8 o’clock, and I went to bed. Well, I couldn’t stay in bed from 8 o’clock till 9 o’clock the next day, without wanting to go to the toilet, so this was a big issue for me.
So I taught myself to get in and out of bed. It was quite dangerous because I was in the wheelchair, I had to stand up and hold on to the bedrail, swing round, and I had to lift my legs into bed, and it would take five or more attempts to get them in. Anyway it was better than being dictated to, so mostly I would let them come and get me undressed, but then I’d go to bed when I wanted to, but it was difficult to have any sort of social life, well it was impossible.”
Jill Mahler started to speak out about her rights in the 1980s:
“It wasn’t really until 1985, when I got involved with the Disability Rights movement, that I really became more articulate in expressing myself about the rights, and saying, ‘Hey, I’m here, don’t forget me,’ and of course that was then when I began to get into trouble more at work, because I would stand up for myself…
“I remember the deputy children’s officer, somewhere where I was working, after studying me for some time, she said, ‘Yes, I suppose it’s good having people like you working for us, that our clients don’t feel so inferior.’ I just took it, whereas after 1985, I would have challenged her.
“Latterly, my passion has been ergonomics, because I believe things should be accessible to all: not specially for disabled people, but for all. For example, the problem of opening doors for someone with a pushchair or parcels are just the same as anyone with a disability.
“We have got to start shouting and saying, ‘This is not good enough that people can be excluded, even physically from places of entertainment or the local pub, because they can’t get in to the toilet, for instance, for who can get in a pub all evening and not go to the toilet?”
Disability Discrimination Act (DDA)
Part III of the Disability Discrimination Act (DDA) came into force on 1 October 2004. This required anyone providing goods, services or facilities to the public to make reasonable changes to features that make it impossible, or unreasonably difficult, for disabled people to access them.
For many like Ted Hemmings, the impact of the DDA has been less than life-changing:
“This business of the Disabled Discrimination Act. I haven’t seen one step go in Cheltenham town centre… My bank has got 3 steps, and it’s still got 3 steps. It’s ridiculous…”
“Every time I go to the bank, I sit out on the front waiting for them to come and look after me, which they do religiously, but I mean the one thing that teaches me is that it isn’t peculiar to people with disability. Mothers with prams have got equally as much of a problem getting the prams in and out of the bank…
“The bank now tell me if they had a ramp, it would go right up into the middle of the banking hall, which I admit you can’t have. It’s just a dog’s breakfast. But I don’t think the Disabled Discrimination Act has done as much as it maybe could have done, and certainly should have done, to make life easier for people with disability; and I think that’s sad…”
Slowly things are changing, partly because of the DDA but mostly because businesses are waking up to the value of disabled people’s custom.
“I go up to the local pub in the village now it’s the summer. I can go out in the garden, and I’ve got to know people up there, and so on but I shan’t be able to do that very soon because it’ll be autumn and winter, so I shan’t go anywhere… It’s access: all the pubs and that are the same. They’re not accessible…
“There’s no disabled toilet over in the community centre, and I had been fighting tooth and nail for toilets in the community centre for about 3 years…
“If you went back over the minutes, you’d see me banging on in committee meetings for about 3 years for disabled toilets. But nothing was done on the grounds that they couldn’t afford it. And they still haven’t got disabled toilets!”
Access to churches
Dr Lin Berwick MBE challenged the Methodist Church when she decided she wanted to be a lay preacher.
“I said, ‘It’s going to make the Church’s life quite difficult, in terms of access, but I feel this compulsion to communicate God’s Word.’
“The secretary of the local preacher’s meeting said, ‘I think we’re going to have a problem with you.’
“I said, ‘Oh yes! Why’s that?’
“‘Well, due to your disability, I don’t know how you’ll cope with the public speaking.’
“So, I said, ‘Well, as someone who’s done over 300 radio broadcasts, I don’t think you’re going to have a problem.’
“‘Oh,’ he said, ‘And I don’t know how you’ll cope with the academic study.’
“I said, ‘Well, I have ‘O’ levels, and I have the equivalent of a degree in Psychology.’
“He said, ‘Oh, you can learn then!’
“And I thought, ‘God, if this is the kind of prejudice I’m going to get. This is just amazing stuff,’ and I said, ‘Yes, I can learn.’
“And he said, ‘And then we don’t know how you’ll cope with the access to the church buildings.’
“And I said, ‘There, I’m prepared to admit you have a problem, but maybe together, we can work at it.’
The right to independent living
Anne Pridmore is passionate about disabled people’s right to independent living:
“I think a sense of isolation, not belonging, is what I’ve picked up during these oral history interviews with people.
“One particular interview I did about 3 weeks ago, it was interviewing a gentleman of 53, who’d been locked away in a residential home for 23 years, and he wanted to get out into the community, get his own home, and when I asked him how many times a year he saw his social worker, he said ‘One or two, if I’m lucky.’
“When I told him about the way I run my life, and that I’ve got personal assistants who support me in whatever I do, he was absolutely amazed, because basically he’d hardly heard of any scheme like that, and I felt very angry at his social worker that, was denying him the information that would make his life better.
“It really did upset me. It’s a feeling of desperation for the people that, you know, you want to be able to help them, and get them out of the situation they’re in. It’s given me a determination to fight on, to make sure that in the future disabled people do have their human and civil rights.”
Slow improvements
Antonia Lister-Kaye described how things have slowly improved:
“We are a substantial minority, and then our experience of life has been, obviously slightly different from that of the mainstream, and I do think disabled people have a much better life now than they did fifty years ago, when we were thought of as one better than freaks, and the way they cut people’s tendons who had bad cerebral palsy in the legs. They mutilated people, and very often made the situation much worse.
“Also, there was more laughing at people, jeering at people in the street. I mean you’d never find today: and the way children were brought up 50 years ago, particularly if they were disabled, a lot of them would be given too much care, and not allowed to stretch their mutilated wings enough.
“Children today, disabled children, are given much more opportunity to express themselves, and to find things that they’re good at, and to be part of the mainstream.”
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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