From her own experience, our Forums Community Manager shares some tips on using your story to advocate for systemic change.
All decisions made about laws, policies, and services concerning people with mental health issues (or the people who care about them) must be made with people who have lived experience.
You may have heard the phrase before, “Nothing about us without us.”
This is systemic advocacy, and often involves using your own mental health experience to represent a wider group of people, perhaps as part of committees, consultations, or other settings.
This can be really rewarding. For me, becoming a representative and building my systemic advocacy skills helped me to make meaning and purpose of my experience, as I put what I learnt into improving mental health services for others.
If you want to use your lived experience to advocate for change, here are some tips from my experience, as well as some thoughts from the Forums community.
To represent your own experience and the needs of others, you will need to be connected to others. One way to connect is to contact with peak bodies, representative services, or lived experience networks. Here are a few to explore:
There are lots of ways to get involved and advocate systemically. For example, you can join consultations, join a committee, or start your own initiative.
The National Mental Health Commission has a page for all their mental health reform initiatives, which I find helpful to explore what's happening in mental health in Australia and see what opportunities there might be to link in with advocacy efforts.
You can also write to politicians or make submissions to government inquiries.
Reading policy documents is not everyone’s cup of tea, but they will be your best friend!
They contain crucially important information to help you strengthen your advocacy by backing it up with commitments and direction from government and peak bodies.
Documents such as the Fifth National Mental Health Plan, the Victorian Royal Commission into Mental Health Services, or your local or state governments’ strategic plans all have actions and recommendations committed to by governments. These policies and strategies can be evidence to support your advocacy.
This information can be hard to find and understand. The Department of Health and National Mental Health Commission websites are good places to start. Going to the document’s Executive Summary, any companion documents for service users, and looking at the lists of recommendations gives you a sense of what is proposed in the document.
Learning the skills to communicate well in committees was a big learning curve for me. Lived experience advocacy training was really helpful when I first started and helped me understand how to contribute to meetings and consultations.
Purposeful storytelling is a powerful tool of advocacy. It’s about picking parts of our story to share with an intention or purpose in mind.
“When I first started sharing my story, I would often feel a 'yucky' feeling in my stomach because I said too much or I wasn't happy with how I expressed myself. It became an important part of my self-care to actually think really hard about what I would share and when. This helps keep myself safe but also others.”
– periwinklepixie, Forums Peer Support Worker
For many of us, there are big feelings attached to our story and the reasons that led us to advocacy. At times, advocacy can bring up hurt and trauma we have experienced before or leave you feeling exhausted.
Make sure to take care of your wellbeing first and have a strong support network around you. I have taken breaks from advocacy for my wellbeing before, which helped to sustain mental health.
“I think every day we get up and live our lives as people living with mental illness, we are making a statement and engaging in a form of advocacy. And sometimes that is enough.”
– periwinklepixie, Forums Peer Support Worker
We also need to be mindful that many others we meet in the systemic advocacy space have lived experience, and sharing our story in safe ways can protect us all from re-traumatisation.
Advocacy is most effective when it inspires hope for change. There are courses available to help you build your advocacy skills, but most of all, other advocates in the space can be incredible mentors and teachers.
I regularly seek the support of experienced advocates to help me grow my skills, and am grateful for their insights, learnings and tips. We are all always learning, and peers can be some of the best people we can grow with.
To find out more, read the full Topic Tuesday discussion on mental health advocacy over on our safe and anonymous Forums. Whether you’re interested in advocacy for yourself, alongside someone you support, or for systemic change, you’ll find plenty of stories and experiences to learn from.
And to join the conversation, register here to be part of the Forums community!