For the first time in a long time it’s been a relief to get to use my equity and inclusion knowledge and facilitation skills for something that feels joyful. I’ve been supporting the British Science Association and UKRI to convene a diverse range of essays on what good community-led research looks like. My role has been to support the 13 contributors to produce a powerful output which will further possibilities for them and their work in this space. Not only has it been healing to facilitate a brilliant and committed group of people who really understand the tensions and opportunities in this work, the team I’m working with at British Science Association have demonstrated an openness to learn and adapt continuously as we go in order to hold a process which truly centres our contributors.
But as any good facilitator does, along the way I’ve been noticing my reactions to what is being shared in the spaces I’ve held. And a question I’ve had to keep on asking myself: why are you so damn triggered? And I realise now, because I was traumatised by my first experience of community-led research back in 2021. As part of the youth programmes we ran at Collaborative Future, we were invited to be youth partners on a £5million consortium of academics, design agencies and community organisations all investigating the underlying causes of poor adolescent mental health. We were excited to hear that the team was wanting to engage our young people, on a paid basis, to help inform the research hypotheses. And given the diverse cohort of young people we were working with at the time and the fact that every single one of us had experiences of navigating mental health issues and systems it felt like the perfect fit.
But three months into the relationship we found ourselves being managed off the project. Why? According to the lead academic, the consortium wasn’t seeking to hear the realities and ideas of “those kind of young people”. Our cohort included black and brown people, trans and non-binary people, people from immigrant families, autistic people, people living in social housing, people navigating multiple mental health issues, people who had experience sexual assault, people who were badly treated by the health system. These same young people were also articulate, intelligent and able to understand and meet the researchers where they were at.
From day one our team had always known the power of young people. We invested in our youth programmes as a route to disrupting the oppressive system because we knew young people saw the status quo with fresh eyes, and brought a unique and nuanced perspective on how to create change. The fact that this creative, passionate and thoughtful bunch were being actively ignored by the institutions involved in this project demonstrated a deep-seated fear of the truth, and how those academics could consider their research as a vehicle for change when they were dismissing the very people that mattered was eye-opening.
But in many ways I also played a role in perpetuating the wilful ignorance. I should have been faster to spot and respond to the red flags. In the first group meeting with 30 white middle-class academics the academic lead was allowed to make claims that “the real problem is black on black violence”. We should’ve walked straight out of that project as soon as the group had no answer for what they meant by “communities” and whether it was being used as a euphemism for racially minoritised people. As a trans autistic person who had little academic legitimacy at the time it felt impossible to speak up in such an environment, but over the past few years I’ve honed my capacity to step into the protection my whiteness provides me in these spaces and to call out the profound harm that this rhetoric reproduces
But even if I didn’t act in all the ways I wished I had, my body knew the score. I sobbed all night following this first meeting. Not only was I angry at the audacity and ignorance of the people working in this space, I was also grieving for myself. I never got to go to university for reasons I now believe are connected to being autistic, working class and a rape survivor, while this room of men in their 50s and 60s were paid 6-figure salaries to study a topic I likely knew more about when I was less than half their age.
We took a long-time healing from that experience. It was my team who had to hold our young people through the re-traumatising nature of the work, even though we ourselves were also struggling with it. What I am proud of is that as a result of our learnings we ran our own peer research into youth unemployment and loneliness - not for the eyes of any academic or government department or health service - but for our community of young people. Led by Prisca, together we held inclusive spaces where people gained knowledge from each other, we paid the young people from our programmes to be facilitators or speakers at the event, and everyone left with something of value from the space. It felt like a truly mutual approach to research.
Which brings me to the question: what do we do when the system doesn’t want to hear the answer? We make it so that knowledge serves us. There are many self-organising communities that have been curating and collating extensive knowledge for one another long before ‘community research’ became something that would be funded. Whether it’s consciousness raising groups that have been part of black liberation and women’s liberation movements since the 60’s, or practical knowledge production such as this Neurodiversity Support Centre - a collection of resources created by and for neurodivergent people.
While community research has become better funded, there are still very few funders that are willing to take communities’ lead in how research should be done and who it should serve. When me, Nick and Alvin ran an evaluation of The Ideas Fund I was energised by the fact that while many groups wanted to be able to use their research to advocate for change in the system, they also generated knowledge that was solely for the benefit of the community that led the research. Many of the researchers I spoke to wanted to create something the community could use, not just a research paper that sat on the shelf. While their research into grief among autistic people and people with learning disabilities was being contested by the university ethics committee (for calling autistic people what they requested to be called as part of the research), Informing Choices NI had already taken their findings and turned it into resources for service providers and hired people with lived experience to deliver training based on the research too.
And while many of the contributors to this essay series deserve to have their research taken seriously by academics, service providers, funders and policy makers alike, community-led research is already doing so much more. It is supporting marginalised people to put a shared language to their experiences, so that the system can no longer gaslight them. It is connecting people with a wide variety of skills, who truly care about the issues they are involved in researching to design their own interventions and support. And when equitable practices are adopted it is delivering change through the process itself - providing resources to communities that are currently under-resourced, offering skills and networks to individuals who have been overlooked, and centring issues that we have ignored for too long.
So while the system might not yet be ready for community-led research, those of us who know its power and potential must continue to develop the practices and learnings, and hold each other to account to ensure research is truly for the benefit of society. As bell hooks argues “education is the practice of freedom” and so even if community-led research is not yet getting the traction or recognition it deserves, we must continue to invest in knowledge that is generated by and for the communities it affects.