This report explores the meaning of “community” in the mental health lived experience landscape. It explores whether those with lived experience of mental ill-health, distress and trauma could be considered a “community”, and also how the term “community” is assumed or forced upon us from outside.
It aims to inform and challenge work focussed on engaging communities and lived experience, exploring the complexities of claiming, building, representing, and working with communities: how people can be harmed, who is left behind, and how the terms “community” and “lived experience” can be co-opted for interests other than our own.
This report is the result of research conducted by survivor researcher Dr Courtney Buckler, coordinated by NSUN, and grant funded by the Communities Team at Mind.
Alternative formats (plaintext Word documents, Easy Read)
Full report – Word document:
Click here to download the plaintext (Word doc) version of the full report
Executive summary – Word document:
Click here to download the plaintext (Word doc) version of the executive summary
Easy Read summary (2 parts) – pdfs:
Click here for the Easy Read version of the executive summary (Part 1, pdf)
Click here for the Easy Read version of the executive summary (Part 2, pdf)
Easy Read summary (2 parts) – Word documents:
Click here to download the Easy Read Version of the executive summary (Part 1, Word doc)
Click here to download the Easy Read Version of the executive summary (Part 2, Word doc)
Key terminology
Lived experience:
- Direct, first hand experience of a particular issue: in this report, of mental ill-health, distress, and trauma.
- While “lived experience” is a broad and inclusive term, it can be vague, making it harder to identify differing needs or analyse how power operates among those with “lived experience” and/or intersecting marginalisations.
Community:
- Throughout the project, no single definition of community arose. Instead, it could mean lots of things: a group we share experiences or politics with, somewhere we belong, or people we feel we do not have to explain ourselves to.
- Community can be something we claim for ourselves, or something we are told we are a part of.
About the report
The aim of this research was to explore what each of these terms mean in relation to each other, including some of the complexities of talking about “community” and “lived experience” alongside one another.
The report brings together the results of a survey, focus groups, and interviews with people who have lived experience of mental ill-health, distress, and trauma. Research was conducted between August – November 2023.
The findings may be particularly relevant to those with lived experience seeking to reflect on what it means to be part of or claim community, as well as those wanting to learn from, represent, co-produce or otherwise work with people and groups who have lived experience (such as policy makers, mental health charities, NHS services, funders, or researchers).
Findings
Overall, the project shows that claiming “community” in the mental health lived experience landscape can be complicated. While much has been gained in the lived experience movement, there are still many people who are neither able or willing to participate in it, largely due to issues of access and power. Even for those who do feel part of a lived experience “community”, it is not easy to stay part of. It is easy to become disillusioned, burnt out, or tired of this work.
The breath of the terms “community” and “lived experience” can also be used by groups with power to homogenise us, paving the way for extractive or tokenistic approaches toward engaging with people who have lived experience. There is not a singular, neatly unified “community” of people with lived experience from which to draw knowledge: we all have different experiences, needs, and views on what needs to change.
Key findings of the research are grouped into themes – please click on the boxes below to expand them:
Defining “community”
- “Community” is hard to define. Participants in this project meant different things by the term. It could mean a group you feel aligned with, those who support you, a group you’ve been told you’re part of, or a space that felt painful to be in. Some people valued community, others felt ambivalent. Some people had negative experiences or felt harmed by community.
- People valued being able to be part of lots of different communities, allowing them to be different people in different spaces. People valued being able to self-define what communities they were in (rather than being told they were part of a group they didn’t feel or want to be part of). Categorising people as part of broad communities they do not identify with can be painful and alienating.
- A focus on “community” can sometimes take a single-issue approach, invisibilising intersectional experiences of multiple marginalisation. There may be value in exploring smaller, more specific communities, which are sometimes viewed as most valuable by people within them.
Defining “lived experience”
- Lived experience is a broad term. Its breadth allows lots of different people to feel part of something. However, the breadth can also make it difficult to identify differing needs among those with lived experience. It can also individualise, depoliticise and sanitise conversations around mental ill-health, distress, and trauma.
- As a vague term, it allows people to identify their experiences without having to make specific disclosures. However, the vagueness can also mean that those with power can claim to have involved “lived experience voices” without specifying how or what experiences those people had. The vagueness of the term “lived experience” can be used to rubber stamp interests that are not our own.
- Despite hearing more from people with “lived experience”, there are still voices we do not hear much from, particularly those with so-called “severe mental illness”, or people who are incarcerated (whether in prison or psychiatric facilities). The breadth and vagueness of the term “lived experience” may contribute to this. While inclusive, using “lived experience” as a catch-all category can make it harder to identify differing needs or analyse how power operates among those with “lived experience”.
The “lived experience community”
- Lived experience can refer to a shared experience(s) or shared politics. It is not clear that those with shared experiences are a “community”, whereas those with shared politics might be.
- Not everyone is willing or able to describe themselves as “someone with lived experience”. Many people are excluded from identifying as having lived experience, particularly those whose experiences are criminalised, or for whom making a disclosure would be dangerous.
- It can be difficult to stay part of the lived experience “community”. This includes the toll of witnessing others’ pain, or having to be/stay in a particular relationship to our distress. It is important that we have or are given space to be something other than someone with lived experience.
- It is also hard to keep faith in doing lived experience work, particularly as it is undervalued and underfunded, and we often work hard for marginal gains.
- Tensions can arise between different individuals/groups doing “lived experience” work; often this comes from differing views on what needs to be done (reformist versus abolitionist approaches), and a lack of resources which can lead us to fight over scraps. Tensions within the movement are exacerbated by funding criteria which miss the specificity of our work, and are most likely to under resource groups doing liberatory organising, or facing multiple minoritisations.
Uses of the term “community”: specificity, co-option, and co-production
- Community can be a powerful term in grassroots work, particularly when trying to create a collective voice or highlight issues that most of us face.
- Community could include those we feel aligned with, accountable to, or those whom we hope our work would benefit. In order to evaluate the efficacy of our organising, it is important to get clear on what we mean when we use the term “community”.
- In mental health, the term “community” is also often used as a synonym for “not in hospital”. While this paints a rosy vision of life not-in-hospital, it can also be used to reject responsibility for care, and assumes that people have either a home/support to return to.
- The term “community” can be co-opted for interests other than our own. “Community” can be used by the powers that be to make minoritised groups responsible for keeping each other well (communities of necessity). While this work can be life affirming, many of us would rather not have to be doing it all.
- Those running co-production initiatives can capitalise on the breadth of the term “lived experience”, cherry-picking people they involve to tick a box of having involved “the community”. This can also include extractive approaches to “storytelling”: asking people to share vulnerable stories from their lives without payment, promise of change, or consideration of how this may impact people. Too little attention is paid to the ways in which “co-production” or “telling your story” can be harmful to people with lived experience.
What would we like to see?
There are issues relating to the use of the terms “community” and “lived experience” that are often overlooked. At the end of the report we offer suggestions for what might happen next. While there are some practical changes that could be made (like changing language or practice), there are no simple catch-all fixes, so our suggestions also offer opportunities for reflection.
Some things we would like to see are:
- Less glamorising of “community”. More consideration and specificity is required when using the term “community”; particularly how it can be used to homogenise groups, or to make them responsible for rectifying structural issues.
- More space for those with so-called “severe mental illness”, ongoing/current (rather than historical) distress, and multiple minoritisations to participate in lived experience spaces. This includes looking seriously at how and why people are currently excluded, and whose interests this serves.
- More engagement with the politics of claiming “lived experience”. While its breadth and vagueness can be inclusive and anonymising, it can also erode solidarity and make it difficult to identify or prioritise differing needs.
- Increased recognition of the toll lived experience work takes on people, including experiences of being in community with one another, the emotional labour it takes to stay a part of, and how easy it is to become disillusioned.