Nothing About Us Without Us…How the bottom-up approach is saving lives in NSW
Before I moved to Australia I worked for the NHS in the UK. My area was improving patient centred care in the community and I learned very quickly that the best way to make a difference was the mantra “nothing about us without us.” Since then, my research and experience in community building has confirmed that approach, time and time again.
So, when I got the chance to visit a centre that supports a very marginalised community, I jumped at it.
It’s fascinating for many reasons. Firstly, it’s the only place where it’s legal to inject drugs in NSW. The law is literally different within its walls than anywhere else. And the reasons for this are important - the Uniting Medically Supervised Injecting Centre Kings Cross, known as MSIC, saves lives.
And not only that, it empowers and trains people who inject drugs to go out into the community and help save the lives of those who are overdosing. An amazing example of listening to a grassroots community and responding to a need.
Because these communities can often struggle for acceptance in our broader community they have experiences, ideas and insights which can inform us about building welcoming and supportive communities.
The recurring themes in these articles are the lived insights of those involved in community building, overlaid with scientific research that backs their thoughts up. There are so many papers that back up the lived experience, the problem is deciding which to leave out! In the podcast there’s only so much room to cite peer reviewed research, so here’s some ‘added value’!
Now I promise I don’t sing in the podcast- but the overarching message is encapsulated in the great Aretha Franklin song, RESPECT. In fact, it’s playing in the background whilst I write this. We are ALL in a better position to achieve our collective goals if we treat each other with dignity and respect. Listening and looking after each other benefits the whole community.
Chief Psychiatrist at South Australia Health Dr John Brayley emphasises the need for dignity and respect to be actively embedded in organisational culture. Respecting those we work with is fundamental to achieving any collective task.
Community development experts Susan Kenny and Phil Connors remind us that community building isn’t “based on virtuous acts that involve pity for disadvantaged people”. Instead, it “involves recognising and respecting” differences and working together for change. Trust and respect are also critical for building alliances with community members, linking into existing networks, and learning from members of the community.
In the podcast Matt Dibbayawan, Health Education Team Manager at MSIC sums it up – without dignity and respect, there is no trust. And without trust there is no sustainable partnership within communities. Trust is the word that keeps on coming up in every article and podcast I do. So hard to gain, so easy to lose…
Another key word coming up regularly is empathy – which is something we at The Missing Piece think should be in everybody’s job description. But it can be hard when you’re busy, the person you need to show empathy towards is not always instantly likeable (often for very good reasons!) or if you are having a bad day yourself.
But there’s solid science behind why it pays to be the good guy.
Neuroscientists have found that when we see someone in pain, the pain pathways in our brain are activated as if we were experiencing the pain ourselves. Although the pain we experience is not nearly on the same level as the person actually in pain, our bodies know how to give us just enough empathy to motivate us to feel concern or offer help. Herbert Spencer, 19th century philosopher and contemporary of Charles Darwin, even proposed that our capacity to empathise has actually been key to our species’ survival.
Empathy is also key to creating a “climate of support” and care within organisations. The Empathy in the Workplace report, which analysed thousands of leaders across 38 countries, found that empathy makes leaders more effective and makes businesses more successful.
And here’s a lovely phrase - Helen Reiss, psychiatrist and author of The Empathy Effect, tells us that “it’s the human bond that adds the music to the words in life”. In her research on empathy in health care, Reiss has shown that the emotional distance practiced by doctors when treating patients - thought to help doctors remain objective and provide better care - actually harms patients and physicians. She observed that when physicians practice empathy in their care, the experiences of patients and doctors and the quality of human interactions in general are improved.
I’m going to leave you with one final thought. Many of you reading this just now will have a boss. And many of those bosses will be managers who tell you (nicely or otherwise) what you should be doing. And then perhaps you impart that information to your direct reports. It’s the trickle down from the top management style and very traditional. But there is another way.
Remember I started with “nothing about us without us.”?
Regardless of your education or expertise, there is really no substitute for lived experience. Not only are community members best placed to identify their own needs and priorities, but they have really valuable skills and experiences which are critical in developing creative solutions.
This approach is grounded in the idea that people who are affected by decisions should be empowered to influence those decisions. It’s called the bottom-up approach.
A crucial component of this approach is listening. At MSIC, Matt has helped to develop the peer volunteer program, which exemplifies what we can create when we listen to members of our communities.
And the bottom-up approach is valuable in taking a fresh look at innovative solutions in companies too. Staff and customers have a unique understanding of what impacts them which fuels creativity and problem solving. A Swedish study of successful innovation in companies found that creativity and innovation were largely generated from the bottom-up. So really listening to people on the ground benefits the whole community and leads to more sustainable solutions.
This article is a bit longer than previous ones - my visit to MSIC has given me so much food for thought, so here are my three community-building takeaways.
1. Walk with your community – Being that stone on the path of someone’s journey, treating people with dignity and respect in even the small part you may play, may make all the difference.
2. Nothing about us without us – This is about listening at the grassroots, hearing what your community needs and acting accordingly.
3. Empathy is everything – Putting yourself in someone else’s shoes doesn’t have to be painful and empathy can motivate us to help in ways that they need.
This is all information I’m using on a daily basis to help build the communities within UNSW, because #belonging is better.
I hope you find the podcast interesting and remember to connect with me.
Listen to this episode on Apple Podcasts , Spotify
