Learning from our different experience
20 July 2023Research
This is the sixth 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.
Shaping Our Lives’ collaboration with King’s College London was a positive learning experience in very many ways. We were lucky we worked with a partner whose heart was in the right place, who like us wanted to see an equal partnership work and we had some lead-in time to get to know each other. But still it wasn’t easy and there were confusions, between us and among us. So really what is needed if inclusive, collaborative research like this is to work is some initial funding from research funders to help us get to know each other to work best together – before we even properly start. At present that rarely happens unfortunately, but funding early on would avoid many difficulties later on.
More inclusive funding
That brings us to the whole bigger issue of funding. We were very lucky we got funding from a special pot of of high status money intended for just such partnerships. But there are few of these on the ground.
There really needs to be a ground up review of research funding to keep pace with big changes that have taken place in research in recent years. Until that happens user led research and partnerships like ours will not get the support they need. We must have a more inclusive approach to research funding that innovates and experiments and enables newer players to get involved.
If we are serious about inclusive research; that is to say research which truly challenges routine exclusions around issues of age, impairment, distress, gender, sexuality, ethnicity and so on, then we must recognize that inclusion often costs money. It’s needed to ensure accessible environments, communication and the additional time that’s often needed to get people up to speed. That money needs routinely to be included in grant giving. Otherwise for all the talk of ‘protected identities’ and challenging discrimination, funders and researchers will perpetuate traditional exclusions and only ever get part of the picture.
More support for service user researchers
The worker on this researcher did not identity as a service user or disabled person. We wanted to recruit someone with lived experience but were unable to. This highlights the fact that while more disabled people and service users are now undertaking research training, enlisting on PhDs and so on, they are still a relatively small number overall. Much more support needs to be made available for service user researchers so that they can take on the increasing number of research jobs where their experiential knowledge is at a particular premium.
From elitist to inclusive universities
Universities have always been concerned with being powerhouses of knowledge, drawing together ‘the brightest and the best’ to advance society through developing prestigious education and knowledge. This sits rather uncomfortably with the mission of movements like the survivors, disabled people’s and service user movements and organisations like Shaping Our Lives, committed to achieving the full citizenship of groups often marginalized and seen as inferior, whose knowledge is routinely devalued.
This pressure on universities to be elite institutions, to be seen to compete on a world stage, has grown over the years, with increasing competition imposed on them through developments like the Research Excellence Framework (REF), overshadowing the lives of academics, however much they want to be part of and a supportive resource for their communities and those who live in them. We all have to recognize this tension and work to challenge it, remembering that universities are also meant to involve their local communities, to achieve change and to support participation in their research and learning. We have to learn the best ways to press these buttons!
In the next and final blog we’ll offer some top tips for taking forward the lessons learned during this positive collaboration.