Earlier in the year MHRUK asked for our help in reviewing applications for three PhD Studentships. They wanted to strengthen the peer review process by including reviewers who could contribute their expertise from experience. We asked Gary, Dolly and Remi to reflect on their experience of acting as reviewers, and we publish their blogs here. One of the themes that emerges from all three blogs is how the language that researchers use to describe the people they are studying can engage them or push them away. They identify the tension between the language that researchers feel they must use with each other to be taken seriously, and the language they would use when actually dealing with a human being in front of them. Hopefully one of the benefits of adding expertise from experience into the peer review process is that funding decisions will be made with the people the research is trying to help in mind, as well as the excellence of the science.
This is Dolly’s blog, there are links to Gary and Remi’s at the bottom of the page
What struck me was how the person with schizophrenia seemed so distant from the research.
Recently, I was asked, along with my fellow peer researchers on the Life Stories Project, to review some PhD applications. I was asked to read them to assess them for clarity of writing, perceived relevance and in our opinion whether it was a useful piece of research to carry out within a PhD programme.
We were given four applications each, to read through and review from a lived experience perspective. I found it an enlightening experience. I have some academic research experience, but even I had to read and reread a few of the applications to fully comprehend what was said – they weren’t a straightforward, easy read. I was surprised that even a few of the lay summaries needed extra effort to be made sense of. Therefore, I obviously connected more smoothly with applications written clearly, and related better with applications that did not turn me into a thing of shame, for having an ‘aberrant’, ‘abnormal’ or ‘wrong’ brain. Why would I like being called abnormal, I would like to put to some researchers.
Some researchers I know, on a personal level, have told me that they don’t like using that kind of language but they have to use this shared language in order to be accepted or to be taken seriously. I am waiting for the day when using pathologising language will be unacceptable, and that they can share their language with me – and others like me – and not push us away.
What struck me was how the person with schizophrenia seemed so distant from the research. For me, the experience of psychosis is not dry and mechanical, nor wholly negative. Hence, I struggled to feel connected to some of the research being put forward. There may be something different about my brain, but I would, by far, have preferred research look at socio-political impacts on mental health, or how we can stop trauma being translated into distressing mental and emotional experiences.
What the process has taught me about mental health research today is that in academia studies still individulise mental distress. We have to fix the broken brain, not the possibly broken world that may elicit these experiences.
As more people from BME communities get diagnosed with schizophrenia, as do refugees, it would be nice to see how racism and social isolation impacts on psychosis, and not put it all on the person’s shoulders, and further isolate them by saying it’s all in their brain. I have been waiting decades for researchers to ‘fix the brain’ in schizophrenia, and it still hasn’t happened yet. Maybe some of that can be diverted to explore external influences on psychosis?
I hope to do a PhD soon, which will explore psychosis artistically, and reviewing these applications has helped me see what makes a strong, clear and inspired application, and to keep an eye on my language. I don’t doubt that all these researchers care about people with schizophrenia, but the principal things this experience has shown me is that there is incongruity in saying ‘I would like to help you, and I will start off helping you by calling you broken.’ Maybe we can’t fix brains at this moment in time, but I hope we can fix research language much sooner.