What even is community, anyway? / What we’ve learned from seeking community participation

Published 15 October 2026

Words by Megan

If you’ve been with us for a while you’ve probably heard us utter the phrase “there is no single Lived Experience voice.” Likewise, there is no single Lived Experience community.

This also means that a lot of our mahi is now invited because our ways of doing allow us to reach many different communities. But over the past 18 months we’ve seen how this connection to communities doesn’t always lead to connection to those who belong to communities.

To put it bluntly, we don’t know if people think of themselves as part of a community anymore.

It’s research design ‘101’ – do people understand what you’re asking of them the same way you do? At the time we started the Mapping the Wellbeing System research, we thought this was a straightforward question as part of the expression of interest process. But what happened – no one signed up. So, what could be going on here?

Let’s start with what I think is the easiest of these three levels of community participation to critique.

Leadership

When I followed up with people who I thought of as community leaders, I heard things like, “oh but I'm not part of a church”, or “'such and such would be great but they’re not working at the moment”, or “I’m not old enough...”.

So, people are imposing expectations on themselves and others. These were people who host spaces for people in need, who advocate loudly for others, who step into roles they may be personally uncomfortable in because they see a greater goal.  All traits of a leader in my books. And surely a leader must belong to a community... right?

Tall Poppy syndrome is rife in Aotearoa, and often “leader” feels like a title we should be gifted, not one we step into. But does leadership imply belonging? And examining my own assumptions then, is community belonging something you give to?

Active participation

Maybe belonging requires you to do something for others. Does it require showing up? Are you a member of a community or space if you show up once? What about twice? Ten times? What about following a forum online? What if there’s a space you want to be in but there are accessibility barriers or limits on how you show up?

This year we’ve hosted several co-designs to create “crisis cafes” (my thoughts on this naming convention could write a whole other series of posts, but I digress...) and we’ve invited people who don't have Lived Experiences to participate.

One of the most uplifting findings we’ve heard from those spaces is that anyone is welcome.

Why? Firstly, because while participating in community can be driven by seeking similarities, it forces us to acknowledge differences (and addressing those differences – power imbalances – is what co-design is all about). And secondly, Lived Experience wisdom (and normative statistics) tells us that a good number of people who aren’t currently part of the Lived Experience community, are likely to find themselves experiencing the distress or harm that unites us at some point in their lives.

One of the most uplifting findings we’ve heard from those spaces is that anyone is welcome.

But then belonging by participation in community can’t be quantified by frequency or degree. So, if community is giving something, and ‘being’ community can’t be counted. What does it mean to ‘belong’?

A large part of my mahi at Changing Minds involves asking and inviting people to share their knowledge. And one of the most frustratingly common things I hear is “I don’t know if I can participate – was my experience bad enough?”

Belonging

Now I can hear Kevin’s voice in what I'm about to write....

What it means to belong to Lived Experience is a hotly contested point in Aotearoa, and I've often reflected that Changing Minds takes one of the broadest definitions I know of: You have experienced mental distress, addiction, substance or other harms. We ask no questions about what that included, nor whether you experience compulsory treatment, and we certainly don’t compare one person’s journey to another's.

However, there is a tiny asterix over this definition (and this is where I'd like you to imagine Kevin’s voice for a moment) do you belong to a Lived Experience community if you have personal experience? Kev would say you  will have learned something and made sense from that experience and want to do something with it.

A large part of my mahi at Changing Minds involves asking and inviting people to share their knowledge. And one of the most frustratingly common things I hear is “I don’t know if I can participate – was my experience bad enough?”

This was particularly common in the Mental Health and Wellbeing Strategy Consultation, people who had personal experiences were stepping up to give their insights, many people shared that it was the first time they had done so. But they didn’t know if they belonged. Taking Changing Minds’ definition, everyone we spoke to belonged to the Lived Experience community. They knew something and they intentionally did something with that knowledge to help others. It didn’t matter if it was their first time sharing or their thousandth.

I think now that maybe the criteria for belonging isn’t recognition, it’s intention and invitation. Someone intends to be a part of something, and someone holds an invitation.

To create community then is an entirely different responsibility. You are often holding both the intention and invitation and giving to community, so that when people want to belong they have a place to be, even if they can’t or won’t act now.

To end with a challenge to you – if belonging is inherent, what must communities and especially organisations, do to create spaces to belong in?