By Sue Bott
Ask a silly question you get a silly answer. Ask an irrelevant question you get an irrelevant answer.
Why doesn’t social care research work for the people relying on social care? It doesn’t work because researchers often don’t ask the questions that people want the answers to. And that’s because people are not asked about research and involved in the doing of the research. So we end up with research that is decided by social care professionals and professional researchers and it matters because that is what comes to determine policy of the future direction of social care.
The UK independent living movement got going in the late 1970s because a group of disabled people got angry with researchers for not asking relevant questions. Famously a group of residents in a Leonard Cheshire home in Lis, Hampshire got together to form what became known as Project 81. They wanted a life, not to spend the rest of their days languishing in residential care. Researchers were asked to research possibilities. The results were very disappointing. The ‘findings’ were all about how the care home could be improved. The researchers didn’t bother asking disabled people for their views or involve them at all. The disabled people rejected the finding and the rest, as they say is history.
Since then we’ve seen disabiled people led research, liberation research – research that has asked the questions that make a difference to people. Much of our social policy has been better as a result.
But we can and should go further.
In 2015 Disability rights UK alongside Disability action Northern Ireland, disability Wales, and Inclusion Scotland were awarded a 5million lottery grant to fund a five year research programme Disability Research in Independent Living and Learning DRILL. We have invited bids from academics and disabled people’s organisations. There has been a huge response. We could have spent the money many times over.
What marks DRILL out as different is that all the research has to be co-produced and led by disabled people. We have encouraged academic institutions and disabled people’s organisations to work together not just on coming up with the ideas in the first place but carrying out research and developing research skills amongst disabled people.
Finding our emerging from the first cohort of projects. Projects have looked at what really matters to disabled people such as the experiences of Asian disabled women, decision making by learning disabled people, peer support in practice, participation in civic and public life, supported decision making and how it can work, young disabled people and friendship – what matters? And many more
The money has nearly run out but we have one more opportunity where we have decided to ask for tenders to do research on 2 very under researched areas: getting our voices heard and seldom heard groups of disabled people such as disabled people in the traveller community.
These are exciting times in research which should inform a better more inclusive social care future.
Disability Rights UK