My favourite article of the week has been this one on Community Based Participatory Research by Green and Mercer. I particularly like the discussion on the first couple of pages about the common subjects of research getting entirely fed up of the process and refusing to be involved unless they were treated as knowledge holders themselves rather than merely objects of study. As a person who lives at the intersection of multiple forms of disadvantage, I feel this! I’ve witnessed many people become utterly fed up with being part of research into their experiences and despite their passion for learning and knowledge and health, step out entirely. I’ve participated in a great deal of research myself and it’s incredibly uncomfortable how frequently my experiences don’t fit the framework provided, or are distorted by underlying assumptions I can’t correct.

For example, as a voice hearer I am often invited to be involved in research about voices. Most is predicated on the idea that voice hearing is a harmful experience or that voices are either helpful or harmful in a simple, fixed binary. For those of you who know, my voice is neither. She generally speaks the same phrase on a loop (“I hate myself”) and I would describe her as profoundly distressed. Trying to answer questions about her and my balance of power in relation to her often means I’m aware my data is being warped to fit a theory that was conceived light years away from my experience – and worse, that will not be impacted by my actual experience in any way.

So, participatory research. Fascinating, collaborative. Like so many of these things, it often works better on paper than in practice where lofty words like collaboration and community become code for collusion, petty arguments, and the plundering of the cheese board at the meeting. It’s harder than it sounds and like any genuinely collaborative venture, it’s easy to derail if anyone involved wants to poke a stick in the wheels.

Some of the better research I’ve been part of has given me space somewhere to share what I think and feel or how my experiences do or don’t fit. It also follows up in some way with the conclusions. There’s a relationship, a sense of reciprocity at least in the process even if we don’t agree at all about anything else. It doesn’t have to be participatory to be collaborative in that sense. Nor does participatory research bypass issues of exploitation or harm in and of itself. The nature of community is the diversity of perspectives and voice – it is rare to be able to accomodate each of them.

The other kinds of research (and I include interview here) feel exploitative. My experiences are collected as evidence of ideas I don’t agree with and contorted to fit arguments that don’t include me. Or they are simply inept, using my time to educate themselves on matters they haven’t bothered to read about. If I had a dollar for every interview that began “So, what does it feel like to have DID?”…

Research fascinates me. It’s something we all do in our own way, whether it’s asking our friends online, checking out a review, reading a memoir or book, we are all constantly in the largely unconscious and informal process of gathering data and testing hypothesis. How did they do that? Does it work better if I do it like this? Perfecting a recipe, buying a car, learning to ice skate, dealing with grief. We navigate experiences, community, and skill building. Sometimes giving a little thought to that process can hone it in powerful ways for us. Who are we looking to? What questions have we not thought to ask? What’s unsayable? And how do we relate to each other, as objects of study or scrutiny, or as people who likewise are looking at us?

Good research is powerful. May there be much more of it.