Tag Archives: DDA

Fighting for independent living – #DDA20

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.

Making Choices

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

Rachel Hurst smiling for a photo outside of HarrodsOne 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 Rachel Hurst smiling for a photo in her homeBerkeley, 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.

Find out more about the activists and campaigners who fought for civil rights and about the Disability Discrimination Act.

How the social model liberated people and inspired a movement – #DDA20

The social model of disability – the idea that society, not a person’s impairment, disables – inspired many disabled people to take action to change the law.

Professors Mike Oliver, one of the key individuals who developed the social model of disability, and Colin Barnes, who published definitive research showing that disabled people faced discrimination, tell us how the social model of disability liberated many disabled people and inspired a movement. 

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.

Professor Mike Oliver

The idea behind the social model stemmed from a document called the Fundamental Principles of Disability that was first published in the mid-1970s by the Union of the Physically Impaired Against Segregation.

This document argued that we were disabled by the barriers we faced in society, not our impairments. I was teaching a master’s course at the University of Kent, the first course in what has now become known as disability studies. The course was mainly for social workers and occupational therapists. I wanted to interpret the social model as a practical tool for professionals in their everyday practice in order for them to move away from a framework based on the individual model.

From theory to front line

I was staggered over the next few years that the social model became the central vehicle for forming a collective consciousness and connecting people with a wide range of experiences of disability. The social model became the basis for the emerging disability equality training and the disabled people’s movement that had been developing for a decade. I never took out the social model to become the all-encompassing, all-seeing, all-singing and all-dancing thing that it became by the end of the 1980s. For me, it’s always been a practical tool for disabled people to change the areas of the world they interact with, never a total explanation of all the experiences of all disabled people all of the time.

Building a community

Mike Oliver posing for a photo in a purple shirt at his homeI remember going to meetings in the 1970s where people with a range of impairments would spend most of the time talking about those different impairments and arguing over who deserved what and who didn’t. Once the social model got picked up by the community, disabled people had a common language to interpret different experiences of disabling barriers. The social model drew people into a movement who might not otherwise have been drawn in. The idea that disabled people needed to remove the disabling barriers that we all had in common was a unifying factor in the movement.

People with impairments often take individual responsibility for their impairments. I spent the first ten to fifteen years of my life with a spinal cord injury thinking that my impairment was my problem. The knowledge that I couldn’t easily enter bars or folk clubs when I went out on a Saturday night meant that I felt I had to take responsibility for taking enough friends to help me get upstairs or downstairs, as and when we might have been required.

Changing society

Once the Fundamental Principles document came out, I realised that I didn’t have to take responsibility because it wasn’t my problem. Society installed steps in the first place and I wasn’t the one who created barriers preventing me from participating in the same things as my non-disabled friends. Talking to other disabled people who had been through the same journey and shared this collective experience of attacking a whole range of barriers instead of existing as isolated individuals was hugely empowering.

Professor Colin Barnes

Disability has always been a huge part of my life. Both of my parents were disabled. I left school without qualifications, so the only job opportunity open to me was low-skilled and low-paid. For seventeen years I was a caterer, while taking night-school classes. The end result was that I went to Leeds University, graduating with a PhD and a published book on the experiences of young disabled people in day centres.

Disabled campaigners had been campaigning for years for anti-discrimination legislation without any success. Opponents of anti-discrimination legislation had cast doubt on how widespread discrimination was in society.

Building the case

The British Council of Organisations of Disabled People (BCODP) set about finding the evidence that would support the case for anti-discrimination legislation. BCODP secured funding for a research project from the Joseph Rowntree Foundation and advertised for a researcher to work under Mike Oliver. I applied and got the job.

My research was conclusive. Disabled people were three times more likely to be out of a job, and unemployed for longer periods, than non-disabled people. When disabled people did find jobs they were usually poorly paid and low-skilled, as was the case with my catering career. Disabled men working full-time earned on average a quarter less per week than non-disabled people working the same hours. And most of Britain’s public transport and public buildings were inaccessible and blocked off from disabled people.

Colin Bzrnes posing for a photo in a suit and tie‘Discrimination was widespread’

The social model liberated and inspired many disabled people. My research showed that what we had already known was definitively true. Discrimination was widespread. We needed the anti-discrimination legislation that we’d been campaigning for. And the opponents of anti-discrimination legislation had to accept research, based on their own figures.

You can find out more about the social model here. 

Find out more about the activists and campaigners who fought for civil rights and about the Disability Discrimination Act

20 years since the Disability Discrimination Act – #DDA20

November marks the twentieth anniversary of the Disability Discrimination Act (DDA) becoming law in Britain. The law improved the lives of many disabled people and put anti-discrimination law on the statute book.  

For many disabled people the DDA was a bitter-sweet victory and didn’t go far enough. However, the civil rights campaigners and activists who fought tirelessly to change the law made 1995 a remarkable moment in disability history. 

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 

Over the coming few days (between 2 to 13 November) we’ll be sharing the stories of some of the people who were on the front line of the movement. People like Baroness Campbell, Mike Oliver and Agnes Fletcher who have all dedicated their lives to making the country a better place for disabled people.

Through a series of videos and blogs we want to share the stories of these remarkable individuals. We believe it’s important to tell this history. Not because it is Scope’s history – it was a movement of activists and campaigners, disabled people and allies – but because a new generation need to know what can be achieved when people come together and call for change.

We also want to hear from you. If you have stories of memories of the campaign for civil rights then get in touch. You can email us or get involved on social media using #DDA20

The next 20 years

We’ll also be sharing the ideas and activism of young disabled campaigners who are now picking up the baton to make Britain a better place for disabled people. This month we mark 20 years since the Disability Discrimination Act, but what will we mark in another 20 years time? In 2035, when we look back, what will Britain and the world look like for disabled people?

We hope you enjoy the stories and they inspire you to keep fighting for a world where disabled people have the same opportunities as everyone else.

Find out more about the activists and campaigners who fought for civil rights and about the Disability Discrimination Act.