Welcome to Topic 2 in your TnT Toolkit. Things are moving along. You've made some connections. Maybe you've engaged with some members of communities who are keen to work with you to make a difference.
Topic 2 deals with how to work alongside peers and what it will take to make that collaboration work, so that you can move on and co-design (our last topic in this toolkit).
Let’s go back to Suzy and Dave:
‘Nothing about us, without us’
This catch cry has been used by several civil rights movements, including the Disability Rights Movement, as a rallying point.
Central to this idea is that the people most concerned about an issue are at the heart of the issue.
‘Nothing about us, without us’ resonates with many people because:
If we have learned one thing from the civil rights movement in the US, it’s that when others speak for us, you lose.
(D. Drigger, (1989.) The Last Civil Rights Movement: Disabled Peoples’ International. New York: St. Martin’s Press, p.28)
As you will see in the last topic of this toolkit, ‘nothing about us, without us’ is also at the heart of co-design, where the people impacted most by an issue are the people at the centre of designing solutions.
- This video called ‘Nothing about us without us’ was made by peers from some of the partner organisations involved in this project as well as others.
- Type 'nothing about us without us' into your search engine and look for videos, there are some great resources, including this one showing a global perspective of women with disability.
The expertise of people with lived experience
The second critical element Dave and Suzy identified is the idea of people with lived experience being experts.
We will talk more about this in the co-design section, but, as it is such an important principle, we want to talk about it here from a human rights or self-determination perspective.
From a peer perspective, the advice and support provided by a peer, an expert like yourself, with similar lived experience is invaluable and lives alongside advice and support provided by other experts such as people trained in certain disciplines or knowledgeable in certain topics.
- Check out the 'What is peer support?' video made by some of the TnT project partners to better understand what peer support is, what it does and why people with disability might be involved in it.
- If that sparked your interest, see the Diversity and Disability Alliance page for more videos on peer support.
In Australia, it is probably the community of people with lived experience of mental illness who have most experience in working alongside governments and organisations to improve outcomes for the community.
- The Mental Health Commission of NSW worked with people with lived experience of mental illness to co-design the Lived Experience Framework. This is a great resource especially if you want to understand some of the systemic, broader thinking.
The guiding principles referred to in that framework (and below) are worth reading and thinking about, as they require cultural and practice shifts for most agencies and individuals:
- trust the expertise and lived experience of people with mental health issues and caring, families and kinship groups
- respectfully apply and embed lived experience skills, information and insights
- develop a ‘safe’ space for dialogue and respectful inclusion of people with lived experience and caring, families and kinship groups and continued learning
- allow for ongoing capacity building of all participants (awareness and skills to change culture)
- work to challenge the status quo regarding mindsets, values, culture and current work practices
- develop a response with a structured and phased implementation (embedding) process
- create or adopt existing practical tools for change and provide support and training
- commit to ongoing collaborative engagement through co-leadership, co-design, co-creation, co-production, evaluation and shared accountability across the system.
The expertise and knowledge that people with lived experience bring to any initiative is invaluable, particularly from the perspective of an organisation like Fair Trading wanting to work with a community.
Dave and Suzy have some ideas and tips you may want to consider when it comes to working alongside peers:
Some of the top tips from Suzy and Dave include:
- Listen (more on this below).
- Don't assume (what people can and can't do).
- Pay is for our expertise. Talk to your Human Resources department or get some advice on how to pay peers.
- In the TnT project, peers became employees employed by the different partner organisations. That employment was subject to the award the organisations operated under.
- For the production of videos, peers were contractors and paid as suppliers. It can be complicated, so check out this ATO webpage for more information.
- Know the difference between getting input from a peer and from a peer-led organisation. Don't underestimate the expertise that comes from lived experience. But remember, input from only one peer means that whatever you do is based on one person's experience. If you want to create something that is more reflective and responsive to a range of people, it's best to engage more people, particularly a diverse range of people (see the co-design section for more).
Equally valuable and important is the experience and expertise a project partner (like Fair Trading) brings to different communities. One of the things we have learned along the way is that each partner has to bring their expertise to the project and be valued equally for it.
Watch the NSW Fair Trading staff discuss what it meant to work alongside peers and how it impacted their work.
The NSW Fair Trading staff (as well as Suzy and Dave) highlighted the importance of listening, so let's have a closer look at it.
In the video Angela who works in Broken Hill says:
“I can’t even word it. But I know there’s a difference between how I listened and how I listen now. As I said, I listened before and I wrote. Now, I listen, and feel it. I think that’s where the difference comes in.”
And while Angela might not be able to put words to it, there are people who can. We have all heard of active listening, but what Angela is describing is beyond active listening.
Maybe what Angela is trying to describe does not have a word in the English language, but it might be something the Indigenous people of the Daily River region in the Northern Territory call ‘dadirri'. It is a 'deep listening, a listening that comes from still awareness”.
Or it might be called ‘ngara’ an Eora language term meaning ‘to hear, to listen and to self-reflect and to finish off what has been heard with an action.’
So, listening to someone means having an obligation to do something with what has been told. This implies a connection, a reciprocity and an obligation by the listener to the speaker.
The Fair Trading staff also talked about opportunities to learn, and in the final section we will come back to learning as one of the key elements of successful co-design.
Now let’s go to the final and most detailed topic of this toolkit - Co-design.