The campaign for a law to ban discrimination was energised by the campaign for Independent Living. Under a 1984 Act, local authorities paid for disabled people’s care, not the disabled people themselves. Independent Living campaigners fought to receive money directly to buy their own care.
John Evans OBE, one of the first disabled people to set up an Independent Living scheme, and Rachel Hurst CBE, who was chair of Rights Now! and founded Disability Awareness in Action, tell us about their campaigning work.
This blog is shared as part of a series of stories to celebrate the campaigners who fought for civil rights. You can find out more on our website or on social media using #DDA20.
John Evans OBE
For me, Independent Living was the real liberation of disabled people from institutions and settings that were restricting inclusion into society.
Two key principles of independence were control and choice. We believed that rehabilitation, medical and social care experts shouldn’t be making fundamental decisions about the lives of disabled people.
The motto ‘nothing about us without us’ summed up the movement well. I started one of the first independent living schemes in the country. A group of us were living at Le Court Residential Cheshire Home in Hampshire and wanted to leave the institution.
Along with seven other people I began to assert control over the decisions affecting my life and making choices. The law at the time was a problem. A local authority directly paid the residential home of the individual, not the individual themselves. We developed a solution which involved the indirect payment to the individual.
Our thinking was this: why should the local authority go on paying the residential home? Instead they should transfer the money into an individual’s bank account so we could control our own budget and pay our own personal assistants.
We negotiated a financial agreement with the residential home which led to us moving out of the institution and living independently in the community. This marked the beginning of the Independent Living Movement in the UK.
This loophole worked in some areas, but other disabled people wanting Independent Living did not live in residential care. As some local authorities would not accept that transferring money to the individual was legal, they wouldn’t take the risk.
Changing the law
In order to change the law to make Independent Living schemes available to all, we set up an Independent Living Committee inside the British Council of Organisations of Disabled People (BCODP), the umbrella organisation of groups run by, not just for, disabled people. Our goal was to ensure direct payments would be made to everybody wanting them.
At the same time, we set up the first Centres of Independent Living to share our experiences and build our campaigning. We set up the Hampshire Centre for Independent Living in 1984, which was the first of its kind in the UK along with Derbyshire Centre for Integrated Living and later the Greenwich Centre for Independent Living.
Rachel Hurst CBE
One night in 1968 I awoke to find myself completely paralysed. I was finally diagnosed with a congenital myopathy, became a wheelchair user in 1976, and lost my teaching job. I thought the only thing to do at that time was to find other disabled people, so I looked up ‘Disability’ in the telephone directory. I found RADAR (The Royal Association for Disability and Rehabilitation) who put me in touch with Greenwich Association of Disabled People (GAD).
When I first got involved with Greenwich Association of Disabled People, it was clear that disabled people had almost no role. After I became Chair in 1981, we changed that, becoming an ‘of’ organisation and a Centre for Independent Living (CIL).
At Greenwich, we took responsibility for running the Dial-a-Ride transport from the Greater London Council, worked with the council to develop flats for disabled people to live in with their personal assistants, and set up a personal assistant’s agency – the only one still to this day run by disabled people for disabled people.
Learning from others
I was talking to John Evans from Hampshire Centre for Independent Living and Ken Davis who had set up Derbyshire Centre for Independent Living. We had pioneered independent living centres drawing on local needs of disabled people, what we had learned from CILs in America and the social model that Mike Oliver had developed. However, the Americans we discussed Independent Living with didn’t talk in social model terms because they had the constitutional protections that we didn’t have.
I’d been inspired to join Greenwich in the first place by watching a TV programme on the Centre for Independent Living in Berkeley, California. I had the fortune to go out to Berkeley just two weeks after John Evans’ visit, and see people living their lives with choice and control over them.
I saw the Independent Living movement as a vehicle for changing society instead of people or their impairments. We wanted to live in our own homes, for those homes to be accessible, for personal assistants if we ever needed them, and for a transformed environment because there’s no point having an accessible home if you can’t leave it.
‘I didn’t want to be a burden’
Independent Living was a big revelation to me. I’d expected to go into an institution. I didn’t want to be a burden to my family.
I didn’t want my son or daughter to feel that they had to stay home to look after Mum. But, once I joined with other disabled people in Greenwich I found my liberation from discrimination – and the liberation of many others who realised that they had a right to be fully and equally participating human beings with personal dignity and integrity.