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Tom Shakespeare

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Tom is a Research Fellow at Newcastle University. His non-fiction books include Genetics Politics: from Eugenics to Genome and The Sexual Politics of Disability.

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Looking back, moving forward

25th September 2006

Did anybody notice the anniversary on Wednesday 20th September? Thirty four years ago to the day, legendary disability activist Paul Hunt had a letter published in The Guardian, calling for 'the formation of a consumer group to put forward the views of actual and potential residents' of residential institutions, which he called 'the successors to the workhouse'.
His initiative led to the formation of the Union of Physically Impaired Against Segregation, who published their seminal manifesto 'Fundamental Principles of Disability' exactly thirty years ago this year. It was UPIAS who dreamed up the concept of the social model of disability, arguing that people were disabled by society, not by their bodies (although the name was first applied by Michael Oliver in 1983).

Many people see UPIAS as the pioneers of disability rights, and the social model as the key to disability equality. In some ways, 1976 has become the 'Year Zero' of disability politics. But I think this is a mistake, as I have argued in my new book, Disability Rights and Wrongs, published this month by Routledge. In fact, I think UPIAS took disability rights down a cul-de-sac, which we are still stuck in today. Because I doubt many Ouch readers will shell out £30 for an academic book, please forgive me if I spend this month's column summarising my view.

As an organisation, UPIAS were hardly a role model. They modelled themselves on the revolutionary parties of the left. They practicised democratic centralism - in other words, once they had decided what the 'line' was, they expelled people who disagreed. The group was small, and dominated by men with physical impairments, which meant that they were not representative of the diversity of disabled people's experiences. By 1976, their thinking had become polarised. And in the following decades, UPIAS ideas were interpreted in an even more rigid way. I believe that today's disability thinking is still contaminated by dichotomies which UPIAS invented: social model versus medical model; impairment versus disability; disabled people versus non-disabled people. And I think that if we are to move forward, we need to understand the complexities of identity and experience, and not stick to rigid ideologies.

UPIAS did not invent disability rights. They were certainly not the first people to understand that physical and social barriers, negative attitudes, discrimination and oppression were the major problems in the lives of disabled people. Plenty of activists and academics had reached these understandings well before 1976 - in America, in the Nordic countries, and in Britain itself. After all, in America, it was the 1973 Rehabilitation Act which first prohibited discrimination. It had been the activists in Berkeley who had first campaigned against barriers. And the National League of the Blind and Disabled were marching in Britain in the 1930s.

In Britain, UPIAS were only one among many emerging groups and networks in the seventies and eighties. Groups such as the Sisters Against Disablement, Gemma, and the Liberation Network of People with Disabilities often had a far more nuanced understanding of how disability affects individuals and society, influenced by the feminist idea that 'the personal is political'. But UPIAS activists dominated the British Council of Organisations of Disabled People when it was formed in 1981, and their views have dominated the disability movement ever since.

Some activists and academics do not want to move beyond the ideologies which UPIAS pioneered thirty years ago. But I think while we should remember and celebrate people like Paul Hunt, we should be prepared to rethink everything. I would like to see a 'post social model' disability politics, where we could be more pluralist, and worry less about terminology or 'disability correctness'. So what might this involve?

First, I think that neither the 'medical model' nor the 'social model' provide the whole picture. Disabled people's lives are complex. Our limitations or difficulties of body and brain do cause us problems. Nobody wants their experience to be medicalised, but nor do we want to reject medicine. Equally, we want to challenge barriers and discrimination. In other words, people are disabled by society, and by their bodies. It is the interaction of individual factors - impairment, motivation and self-esteem - with external factors - the barriers, oppression and expectations and attitudes of other people - which combine to create the experience of disability.

Second, I think that identity politics is not the only answer. For many people, attending demonstrations and disability arts events is what it's all about. But many, many more people with impairments do not want to identity as disabled. They want to get on with their lives, and to participate in the mainstream. The Disability Rights Commission has already recognised this: they don't talk about 'disabled people' anymore. They talk about 'people with rights under the Disability Discrimination Act'.

Third, non-disabled people are not the enemy. Doctors, teachers, parents, and researchers do not have to be disabled themselves to be good allies or supporters. We want to get disabled people into positions of power and influence and visibility, but we also need to collaborate and form partnerships with non-disabled individuals and organisations, including government. Lots of us spend most of our time with non-disabled people. Many of us do not want to be separatist, and could not afford to be.

Finally, we have to recognise that the world has changed since 1976. For example, most special schools are very different from those that activists attended decades ago. Many disability charities have transformed themselves. Attitudes to disabled people and provision for disabled people have changed considerably. Slogans and ideologies which were created in a different world have less resonance or relevance in 2006. Of course there are still major issues and barriers to be overcome. Many disabled people are still living in poverty and are still excluded from the mainstream. But if our thinking and our activism is to respond to these challenges, we have to be forward looking and radical, not backward looking and conservative.

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