From April 2023 — March 2024, I worked with NSUN on a piece of research exploring community and the mental health lived experience landscape. The research involved a survey, interviews, and focus groups with people doing lived experience work in mental health.
This work was motivated by the desire to understand more about how community works in the lived experience landscape. Key areas of focus included how people with lived experience understand the term “community”: whether we are one, who gets to be a part of it, and how lived experience work can be co-opted for interests other than our own.
Here, I want to reflect on some of my key learnings, particularly focussing on issues around power, access, and lived experience work. Overall, this work highlighted a need for a more nuanced engagement with the term “community”. While I am the author of these words, only some of the ideas are my own — my gratitude goes to the many people who spent time thinking, reflecting, and sharing their insights with me.
You can learn more about the work and find the publications here.
Definitions: In this piece and throughout the report I use the term “lived experience” as a shorthand for those with lived experience of mental ill-health, distress, and/or trauma.
What is a “community”?
Overall, I found that there is no single definition of “community”and people experienced it in lots of different ways and places. Communities could be any size, and exist in many different places (both in person, and online). “Community” was more of a feeling than a particular place or characteristic, requiring a mixture of both sharedness and belonging. Some people were part of multiple communities, and valued being able to bring different parts of themselves to the fore in different spaces.
One of my first learnings was to realise that “community” is not always wholly a good thing. Emphasis on “community” can make people feel isolated. People can be harmed in, and excluded by communities. Even where we do feel part of a “community”, only certain parts of us might be welcome. Sometimes we choose to be part of a community, other times we are told we are part of one.
The potentially negative uses of the term “community” stand in contrast to often vague and virtue-signalling uses of the term, particularly by funders, healthcare service providers, in policy landscapes, and often too, the third sector. Instead of promoting some new term or encouraging different language, what I really wanted was to promote nuance, sensitivity, and caution when thinking about “community”.
I want people to reflect on the ways that the word “community” is used both by and about them, with a sensitivity toward the power dynamics of claiming that people could or ought to belong to a particular group.
The lived experience landscape: are we a community?
Part of my work involved asking whether those who have lived experience could be considered a “community”. Though, this became difficult when I began to realise just how broad the term “lived experience” is. Really, the term could mean anything — after all, as one participant pointed out, all experiences are lived, aren’t they?
“Lived experience” is an inclusive and anonymising term, allowing a broad range of people to identify as having a set of experiences without having to make specific disclosures. It is also important to have the language to articulate the value of, and advocate for, expertise gained from people’s everyday lives rather than academic or theoretical knowledge.
At the same time, the breadth and vagueness of the term “lived experience” can also make it seem as though we all exist on equal footing, with equal access to power and resources. This is not the case.
Participants spoke to me about the ways in which the lived experience landscape had become dominated by those who are closer to power (for example, those with “low intensity” mental health problems, are white, university educated, middle class, able-bodied, and/or hold professionalised mental health roles). People felt that there are still many groups we do not hear from, such as those who are acutely unwell, are facing multiple minotirisations, and/or are incarcerated (whether in a psychiatric facility or prison). Because we all fall under the banner of people who have “lived experience”, it can be difficult to identify specific sub-needs within our “community”.
In this sense, as another participant put it: “the pursuit of inclusivity can end up inadvertently eroding solidarity”. The favouring of those with most power is exacerbated by funder practice and tokenistic attempts at co-production, which tend to give resources and opportunities to those most proximate to “the system”, and to projects concerned with reformist rather than abolitionist approaches to social change.
Similarly, not everyone is equally able to identify as having “lived experience”. This fact is often unacknowledged when trying to build solidarity and community in mental health. While “lived experience” is anonymising in some sense, it is also a disclosure of sorts. There is a privilege (however small), in being able to position ourselves as having lived experience. Identification can be limited by many things: our jobs, citizen status, age, “capacity”, the safety of our environments, whether we are afforded the vulnerability to be considered “mentally ill”, and in some cases, the sheer fact of whether or not we are still alive.
We can try our best to build inclusivity in lived experience communities, but there will always be some of us who are unable to describe ourselves as such; it is an uncomfortable truth, but one we must learn to hold, acknowledge, and try our best to reconcile.
The lived experience “community”
I also wanted to explore what it is like to be part of the lived experience “community”: to be someone who has lived experience and feels in some way connected to others within the mental health space. Through my research, it became clear that those of us who could be considered “lived experience leaders” are most likely to think of ourselves as part of a “community”. This sense of being a part of something bigger than ourselves generally rested not simply on shared experiences but also a sense of shared ethics and politics in relation to mental health. The exact contours of this political stance are hard to articulate, but generally involves a commitment to abolitionist principles, justice, autonomy, an attention to intersectionality, and some kind of identification with the lineage of survivor activism.
Feeling part of the lived experience “community” has many benefits. It helps us carry the pain of this work, to vent, and to protect one another. We can share our insights, link each other up with others in the space, lend an ear, and build new forms of care for one another. It also helps us to sustain some sense of hope — recognising that while there is still so much work to be done, we might possibly achieve our ends together.
But being part of this “community” is also hard and not simply because of tokenistic and exploitative approaches to lived experience. This work can be painful and exhausting. It is easy to lose faith. People can feel pressure to take “stances” or speak out on issues they feel uninformed about, exacerbated by social media contexts which encourage division and misunderstanding over dialogue and care. People also spoke to me about the dangers and toll of “overidentification”, this sense that being part of the lived experience “community” requires us to constantly invoke and be in relation to our painful histories.
Recognising the difficulties of this work is not to damn it entirely, but to tell the truth. If we are ever to “win”, we must tend to our losses, together. We must acknowledge the difficulty of doing this work while also ensuring it still gets done — this will, and must, be a collective project.
“Community” and the powers that be
Another key learning from this work was to notice the ways in which “community” is used by those with power to homogenise groups and maintain the status quo. In many ways, these groups (be it funders, service providers, or researchers) can capitalise on the breadth of the term to avoid confronting difficult issues around power, access, and justice.
For example, the issues around co-production are well documented: many of us are asked to tell our stories and express our opinions in ways that maintain the status quo, offering only a little but not too much challenge. Often, this work is underpaid and under supported. Those with power can make use of the vagueness of “lived experience”, cherry picking people they involve, and citing our own names to rubber stamp initiatives that harm us.
“Community” is also used vaguely within NHS services, with “care in the community” often used in opposition to being in hospital, assuming that people do in fact have “communities” they can rely on, or that not being in hospital is what people want the most. “Community” here can be used to reject responsibility for care.
Similarly, funders can also use the term “community” in non-specific ways, also entrenching the idea that “communities” could and ought to support one another. While we are always best placed to support one another, participants told me how uncomfortable they felt when funders make us responsible for one another. It is important to fund small, community, lived experience-led projects, of course. But this must not be seen as a substitute for fixing institutionalised and systems wide projects in the first place.
For example, one participant spoke to me about having received an award for being a “community leader”. While this person felt (in some senses) grateful for the recognition, and was proud of the work they do, they would rather not have to do the work in the first place. Often, the existence of community groups, particularly user-led groups in mental health, exist as a response to state and systems-wide failings. Our work is precious, but sometimes we shouldn’t have to be doing it in the first place.
We must be critical of how those with power use the term “community” to virtue signal, and to make us responsible for mopping up failures that are not our own doing.
Conclusion
I am blessed to feel part of many communities — places I feel I can rest and be nourished by others who understand and care for my experiences. Many of these communities overlap and intersect with those who have lived experience. I belong to and care deeply for the Mad folk, the Survivors, and the Neurodiverse. Along with the Queers, the Buddhists, the Witches, and the makers of terrible Dad jokes: these are my people. Not all of me is welcome in each of these spaces, but enough is. Collectively, I feel there is a place for me in the world, and community is a large part of why I feel this way. The privilege of this assertion is not lost on me.
While everyone deserves the blessing of belonging, we must be careful not to push, strive for, or manufacture it. Community can bring us a sense of safety, autonomy, and care, but in some instances, it can also stand in the way of these things. Communities can be sites in which we are harmed, and they can also be used by others to harm us.
This research taught me a lot about community, both its value and also its limits. Instead of trying to resolve or hide from those limits, I wonder what it would be like to embrace them. Not as acceptance, but as acknowledgement. Only when we are able to tell the truth about community — however painful — may we work to ensure that everyone feels that there is somewhere in the world, however small, that they belong.