Skip to content


A different kind of research

5 July 2023

This is the fourth in a series of blogs by Peter Beresford about a research project which Shaping Our Lives has carried out jointly with King’s College London. You can also read a report we have written about the project, Match Making In Research

While it might not be an obvious priority for groups facing oppression, research has long been a concern of the disabled people’s and mental health service user/survivor movements. This is because research tends to be associated with producing the ‘official’ knowledge and evidence about people and things. Policymakers and politicians may not act on research but they are more likely to believe what it says than any individual or group with lived experience.

So, in the 1960s and 1970s when some disabled people in residential services wanted to live ordinary lives alongside non-disabled people in ‘the community’ and no one believed that they would be able to, they had the bright idea of calling researchers in to show that they really could. (Learn more about this famous case.) It became famous because the researchers, from the Tavistock Institute concluded that they couldn’t and said that they would instead always be ‘social parasites’. The disabled people involved in turn called them ‘parasites’ for just confirming the official non-disabled view and vowed that in future they would carry out their own research.

And this is exactly what has happened since, under headings liked emancipatory disability research, user-led research and survivor research. All these put a very different meaning on research, how you should do it and the principles that should shape it. It is important to understand this difference in any discussion of research or a particular research project.

Traditionally research has emphasized its ‘scientific’ basis. It isn’t just a matter of opinion, one particular point of view or individual conclusion. Its advocates have always highlighted that this is the most authoritative way of generating knowledge. It is done according to particular clear and agreed rules and in a systematic, rigorous and replicable way. It’s long been claimed that research tells objective truths; it is independent, objective and distanced from its subject.

All this sounds positive and reassuring – it’s not just someone trying to sell us a particular view, or their prejudices. But yet looking back at the conclusions of the Tavistock study, we know now how wrong they got it with their traditional research. Disabled people can live in the mainstream. With the right kind of support they can do most of the things it was said they couldn’t. They certainly don’t have to be and aren’t dismissable as parasites. What is crucial here is not putting barriers in their way and excluding them. This has all since been proved by research.

Moreover, service users, starting with disabled people, came up with a fresh set of principles for their new emancipatory, user-led research. These make it absolutely clear that the fundamental purpose of research as far as they are concerned is to improve the lives of the people with and by whom research is undertaken. Thus, the principles set out that:

  • The relation between researchers and researched should be equal
  • Research should support the empowerment of research participants
  • The aim of research should be to bring about change in line with securing the rights and interests of research participants and people like them.

So research is about making positive change, treating people as equals and improving people’s lives. It is not based on abstract ideas of the neutrality or ‘scientific’ nature of research, but its ability to generate knowledge that can lead to self-defined improvements at personal and political levels bringing about change.

This is not about a special group claiming to be experts making claims to be superior knowledge creators as ‘scientists’. It is about people working together to develop the knowledge for self-defined reform and rethinking. Research isn’t just a technical exercise – it is a political one too. And it is this recognition of that fact which has created some of the biggest arguments and disagreements seen in research for many years. This is a point we need to take with us on this journey of trying to make sense both of the specific research project jointly undertaken together by Shaping Our Lives and King’s College London and of research much more generally and why it makes for added complexities.

We’ll be hearing much more about that in the next blog. See you there.