Why Independent Living gave birth to the Social Model and the Civil Rights campaign
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 such as John Evans OBE fought to receive money directly to buy their own care.
I became quite active in the campaign for disability rights in the late 1970s, originally through the campaign for Independent Living.
For me, Independent Living was the real liberation of disabled people from institutions and settings that restricted inclusion into society. Independent living was about disabled people regaining control of their lives and making their own choices.
Building the Independent Living movement
The two 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 of the Disabled People International which was formed around this time in 1979 — ‘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 at Liss in Hampshire in Southern England, and wanted to leave the institution.
In 1979 we pioneered ‘Project 81’, and began to apply the principles of Independent Living. We used this title because 1981 had been designated the United Nations International Year for Disabled People, and we thought the year would be significant for promoting our cause.
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.
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 some other disabled people who wanted 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.
Some years later this was the reason we set up an Independent Living Committee in 1989 with the primary goal of getting a law for direct payments to make it available for all those who wanted.
At the same time as we were setting up our independent living schemes, we set up the first Centres of Independent Living to share our experiences, develop a supportive infrastructure and build our campaigning. We set up the Hampshire Centre of Independent Living in 1984, which was the first of its kind in the UK along with the Derbyshire Centre of Integrated Living.
In 1989, Rachel Hurst, Phillip Mason, Etienne D’aboville, myself, and Carl Ford - who sadly isn’t with us now — went to a disability event at the European Parliament in Strasbourg in 1989. Most of the people were personal assistant users, drawn from eighteen European countries.
This was where the European Network on Independent Living (ENIL) was created to campaign throughout Europe on the key issues of Independent Living. From that meeting, we established an Independent Living Committee inside the British Council of Disabled People capable of working within the Europe-wide network.
We were striving for civil rights legislation at this time, especially after we saw the American disabled people get their legislation in 1990 with the Americans Disability Act. The Independent Living movement in the UK took inspiration and ideas from the Independent Living Movement in Berkeley, California in the 1970s. During 1981 I travelled on a research trip to Berkeley and the US and visited the first ever Centre for Independent Living along with three other Centres of Independent Living in Boston, St Louis, and Albuquerque.
Developing the Social Model of Disability
Project 81 was close to the development of the social model because Paul Hunt — who came up with the idea— was a resident of the same residential home during the early 1970s. I had lots of contact with people such as Mike Oliver who developed the social model which was very inspirational.
A breakthrough came when I was the Chair of the British Council of Disabled People from 1989 to 1991, and we commissioned a piece of research into the Government’s argument that discrimination was not systemic.
The publication of that anti-discrimination research was one of the key turning points in the campaign for civil rights. The Government’s position of education, persuasion, and raising awareness was exposed demonstrating it did not work. Discrimination was widespread and institutional and legal change was absolutely necessary.
Campaigning for Civil Rights
I don’t think discrimination legislation would have been passed without a campaign publishing research, lobbying Parliament, and finding MPs to back Private Member Bills year in, year out. But, the impact of Direct Action was immeasurable. The Rights Now! group was formed as an amalgamation of organisations of disabled people like the British Council of Disabled People and disabled activists along with the traditional charities.
It wasn’t easy working together but did strengthen our cause. I’m sure that the fact that we all came together and campaigned was decisive.
Standing up for equal rights at a rally in Trafalgar Square
A rally in Trafalgar Square in 1994 calling for disability discrimination legislation was one of those great moments when everyone came together to create a party atmosphere. There was a lot of anger within disabled people, but there was a tremendously uplifting feeling because we had come together in large numbers and with such a high energy level.
We felt hopeful because we knew the idea that we had was so powerful and the vision so strong that we had to achieve it. We knew what we believed and we knew it was right. We knew it had to be the future for disabled people in this country, and I think the buzz we all got at Trafalgar Square was important to keep us going on and keep fighting.
We’d seen the same thing happen in the fight for Independent Living. We started Independent Living in the late 1970s when barely anybody knew what Independent Living was. Yet all of us had known that Independent Living had to be established as a way of supporting disabled people in the community and freeing them from imprisonment, isolation, and segregation.
I spoke on the stage at the rally. With those kinds of speeches, you need slogans and soundbites and have to arouse feelings. It’s inspiring and uplifting, but daunting at the same time. To go onto a stage with experienced public speakers like Tony Benn felt nerve-racking. I’ve had more experience of public speaking since the rally, but I can still remember how nervous I felt.
In my speech, I told the crowd that we couldn’t give up. We had to keep on campaigning to get this Bill. We need our rights in this country. Disabled people have their rights in America, and we couldn’t be left behind. It was so important to keep going. Our strength is our unity, together we had to push forward to get the rights we needed and deserved.
At that rally, I mentioned Independent Living because it was a key part of what the disability rights movement was about: the right to Independent Living for public transport, employment opportunities, and so on.
There was a lot of anger inside of us because we were fighting for a cause we believed in. At the same time, there was a real sense of community, a sense of belonging. All of these people from across the country were all fighting for the same thing. It was a very unifying factor and that’s always very inspirational. The adrenaline gets going on those kinds of actions.
Reflecting on the Disability Discrimination Act
When the Government’s Bill finally did come out, it was a watered-down piece of legislation. The Disability Discrimination Act didn’t look anything like what civil rights campaigners wanted from a civil rights statute. Unfortunately we had to live with it.
I don’t think we would have had the Disability Discrimination Act without Direct Action and the media coverage that focused on our protests.
A few MPs were critical, going onto television saying things like “they’re a load of hooligans and we are not going to let their protesting bring London to a standstill and put out the public.” They were very reactionary.
But, Direct Action is the reason why the Act came about so quickly after the collapse of Roger Berry MP’s Private Member’s Bill and after fourteen years of campaigning for legislation.
A shorter version appeared on our website as part of a series of stories to celebrate disabled campaigners who fought for civil rights. You can find out more on our website or on social media using #DDA20.