Kindness doesn’t cost money, it doesn’t need a policy, it doesn’t require funding approval. It’s free. But in healthcare kindness can sometimes feel like a scarce resource. One participant from What I Would Like to Say… put it simply:

“Being nice doesn’t cost anything. It’s not something you can charge to the government.”

They were quick to acknowledge the reality: hospitals are massively overrun. Staff are underpaid, overworked, and exhausted. Staff often do twelve-hour shifts, back-to-back night shifts and hold the emotional weight of constant crisis. This is not about excusing emotional detachment, but about recognising the conditions that make empathy hard to sustain within healthcare.

We all have bad days — even on our best days, showing up fully can be a stretch. But when the same groups of people are consistently met with unkindness, indifference, or disbelief — that’s not exhaustion, that’s a systemic problem. One participant half-joked:

“If you’re going to be a bit of a jerk, at least be consistent. Be a jerk to everyone, not just specific people.”

Behind the humour lies a truth about bias and selective empathy. Kindness shouldn’t depend on who’s sitting in front of you.

Advocacy, Activism, and the Long Game

It’s easy to feel powerless when you’re up against slow-moving institutions however, change doesn’t always look like revolution. Sometimes it’s small acts, the community research projects, the advocacy work, the mutual aid groups, that slowly reshape healthcare culture.

“There’s not an amazing amount we can do as individuals but so many disabled people are doing brilliant work, online and offline. Even if it doesn’t change things for us, maybe it will for the next generation.”

That hope — for their kids, their communities, for the ones coming next — is what keeps many advocates going. It is what keeps me going as a lived experience researcher. Participants are the reseason my research exists, by sharing deeply personal, often painful experiences, they are creating a new pool of academic knowledge. It takes courage to speak up about being mistreated by an institution.

That’s what community-based research gets right: it’s built on trust. It’s led by people in the community, not just studying it. And when you bring lived experience into the process, it stops being purely academic — it becomes relational, empathetic, and deeply human.

Why Stories Matter

One participant shared something that stuck:

“Even if nothing changes overnight, there’s a ripple effect when we share our stories.”

That’s the whole point of narrative work. Stories don’t just describe experiences — they connect them. They build empathy.

It’s powerful to hear that someone in your own town, someone who maybe even went to the same school, lived a completely different life. It reminds us how much we don’t see, and how easily we assume our version of the world is universal. It is also powerful to hear stories that are very much like your own – that is how belonging occurs. We can share parts of ourselves that we thought were unworthy or burdensome with others who share those same experiences. It’s very cathartic.

Through listening to stories, and sharing our own, we can shift something fundamental. It doesn’t require expertise. Just presence.

There’s No Community Like the Disability Community

When I walk into a room full of disabled people, I feel like I’m home. I am in safe space where there is no judgement, just understanding. I can stim, talk loudly, misunderstand social ques, sit on the floor, stand up when I need to. People might check in but they never bother me.

This is a big reason I love doing research with other people with disabilities – even when the research is heavy — like cancer studies or discussions of systemic exclusion — there’s laughter. Connection. The shared joy of being with people who just get it. We may have different bodies, minds, access needs but there is an unspoken connection and mutual recognition.

It’s that connection that fuels my work — the conferences, the projects, the papers. At the heart of all my research busy-ness is a desire to make things better. All of this advocacy, research, community — it’s meaningful, but it’s also heavy. The work will always be there but so will the need for rest, connection, and kindness — the quiet, consistent, human kind that sustains everything else.

“Kindness doesn’t cost anything but maybe it’s time we treat it like the most valuable thing we have.”