Frans Spierings is a lector at Rotterdam University of Applied Sciences and a researcher at KOPLOPERS, a project that aims to make mental health problems among young people easier to talk about. From start to finish, young people are involved as co-researchers.
As a researcher, I have always been interested in deviant behaviour. Where does it come from and how does the environment react? During my research on homeless people, I had a lot of contact with people living on the street. Some of them even came to my promotion ceremony. So yes, I have always been interested in the voice and experience of others.
However, I have to say that this way of working had sunk in a bit the last few years. In the world of research you have to deal with deadlines, grant applications and your own important 'self'. That sometimes makes it difficult to remember what it's all about. And the more you become an expert on a subject, the easier it is to reason from your own point of view. "You've already researched so much, haven't you?" Just call it a bit arrogant.
When doing research, researchers are used to determining the problem and the research question. But whoever determines that, actually has the power. With this project KOPLOPERS, I handed over that power. We wanted to know from the young people themselves what they had to deal with. That was scary. Because let's face it, the more closed off your plan, the more chance you have of controlling its course.
But the more you try to control things, the more you view things from your own bubble. And that's the way that researchers come up with plans to which people from the target group will say: 'You've come up with a solution for a problem that we do not have'. Participation gives people ownership of a research project, it makes it about the people with the people. The voice of the other is clearer, the support for your project is greater and new insights arise.
My mentor and Professor of Methodology Ilja Maso always said that a researcher must set aside all his previous ideas while collecting data. While that is very difficult, it is a requirement to really understand the reality and experience of the other person. For example, one of the young peer experts I work with had suffered a psychosis. He walked the streets in his underwear, wearing a bed sheet on his head and body. Like Jesus from a movie.
Real listening is done with an open mind and - equally important - an open heart.
Yet suprisingly, the experience was not at all negative for him. He felt as if he understood the whole universe, which was actually great. So it turned out that for him there could also be positive elements to the disruption of such a moment. If you don't know that, because you haven't experienced it, you have to be humble.
To really be open, I had to get out of my comfort zone. But I managed to go back to that blank page, tabula rasa. And to listen to what the young people thought. Really listen. I thought I could do that, until someone said, 'You're only half-listening. You're listening with your theoretical view about how the world works.' That shook me up. I realized that real listening is done with an open mind and - equally important - an open heart.
Suddenly, in a conversation, I heard myself talking about my own psychological vulnerability. I hadn't planned on doing that at all. It happened to me and it led to something new; a relationship, real contact. That is the most important thing you can have. As a human being, but also for the research. We researched the contact strategy as a means of discussing vulnerability; honesty and authenticity turned out to be very important.
Language is also important. This became clear from the start of our research. Initially, we spoke of psychological problems, but the young people thought that was too negative. We chose the term' vulnerability'. Because that is something that belongs to everyone. They found many more new words. A 'hope provider' instead of a 'care worker'. Because, they say, the only one that can help you is yourself, but someone can give you hope.
Or not talking about recovery - going back to the state something was in - but talking about adjustment; on the way to something new, something better. It is a reversal of thinking that I also learned during the project. Yes, there is vulnerability in our peer experts, but also strength. What they are very good at is experiencing and feeling. Or facing their own demons. So, the starting point is not 'we can help them', but 'they can help us'.
I would certainly not say that I have lost my arrogance forever. But the young people and their experiences have touched me.
Because society belongs to all of us. To the healthy and what we call 'successful' people, and to the people who struggle with a part of themselves - their psyche. They too deserve a voice that goes beyond the current stigma. That happens with participative research like this. We can all learn from that voice. That is how we build a more just system, with new patterns and power structures.
Clearly, I am back to believing in participation in research. Yet, participative research is not for everyone. You have to have the courage to really approach the other person openly. Because that can also produce views that deviate from previous ideas. This kind of aproach can be difficult for scientists who think they have a monopoly on wisdom.
I would certainly not say that I have lost my arrogance forever. But the young people and their experiences have touched me. For me, that's reason enough to keep this renewed open mind.
© ZonMw 2020
Author Marieke Kessel. Photography Studio Oostrum, Marieke Kessel