OUR COLLECTIVE VISION
The declaration is a collective dream about the future.
We dreamed about what it would look like when we replace the mental health system with something wonderful.
This declaration was collectively created by people from all around Victoria with lived experience of emotional distress, trauma, neurodiversity and mental health challenges. It was first launched on 1 November 2019.
This is a living vision. It will keep evolving as long as we all keep dreaming.
The sections below provide more detailed information about the dreams in the declaration.
LISTEN UP, OUR DREAMS MATTER MOST!
For too long, governments have listened to the wrong people about what’s needed in the mental health system.
The sector will always lobby for their interests first: more hospital beds, more clinical jobs, more funding. And with that comes many things that we don’t want.
Family and carer interest groups can also lobby for things that we don’t want. Like more compulsory treatment and detention.
The fact is, WE are the people who actually need support. And we don’t need people to speak about what’s in ‘our best interests’. We can speak for ourselves, and we know what we want and need.
We call on governments and mental health leaders to listen to our dreams, and to help us create the kind of society, systems, services, places and supports that matter to us.
WE WANT MORE CHOICES
There is one theme that stands above all others in The Declaration. We want more choice. We want lots more options, and then to choose what works for us. Choice was a strong theme in every topic in The Declaration.
People spoke about diverse choices.
When we asked what supports you need, MEDICATION rated the same as MEDITATION.
When we asked what kinds of people you need to support you, PSYCHIATRISTS rated the same as YOGA INSTRUCTORS.
Many people dreamed about human rights, rights-based laws, non-coercive experiences and freedom.
THE EIGHT DREAM TOPICS
People’s dreams were grouped into eight topics. In the sections below you can read about our dreams for each topic.
We have used ‘word clouds’ to display our collective dreams. These are set up so that the dreams that were shared by more people, are bigger and bolder. However, even the smallest items in each word cloud matter. Please note that, for legibility, we have had to leave out dreams that were only mentioned by a single person. However, all of the dreams, in their full detail, will be shared at a later time.
If we remember that choice is the overarching need, then these word clouds tell us the scope of those choices.
The topics include:
- OUR EXPERIENCES: How we conceptualise and understand our experiences
- SOCIAL CHANGE: How we want society to change
- CONCEPTS: The concepts that would shape a wonderful mental health system
- PEOPLE & VALUES: The people and values we need for support
- PLACES & SERVICES: The places and services we want to access for support
- ACTIONS & SUPPORTS: The things we need to do, or receive, for support
- ACCESS: How we need to access these things
- OUR LIFE OUTCOMES: How our lives will be different
We have very diverse ways of understanding the experiences that are often called ‘mental illness’. However less than 20% of people thought that ‘mental illness’ was a helpful or accurate description.
Our collective dream is that people will respect that there are many varied and different ways to understand and describe our experiences. And each of these worldviews matter if they are helpful to the person who believes it.
The language that most collectively describes our experience is this:
We are people with lived experience of emotional distress, trauma, mental health challenges and neurodiversity.
We note that this description includes different worldviews:
- A worldview that we have painful, human experiences rather than a health problem
- A social determinants worldview, that our experience is a normal response to trauma
- A more traditional, but hopeful, view of mental health and challenges to be overcome
- A worldview that our experiences can be positive too, and that rather than trying to change us, the world should be more welcoming of diverse ways of thinking, feeling, perceiving and being
At least one or more of these terms was liked by 80% of people in our survey, and another 16% said they ‘could live with’ this language.
We also asked people about the words used to describe us, like consumer, patient, survivor, or ‘the mentally ill’.
The only options to be liked by more than half of us was person-first language (i.e., person with mental health challenges, or person with lived experience). However, around 11% dislike the term ‘lived experience’. Every possible descriptor was liked by some and disliked by others—demonstrating great variability in our preferences.
What about the term ‘consumer’? The views are very mixed: 24% like it, 42% can live with it, and 32% dislike it.
The terms ‘users’ and ‘mentally ill’ were liked by the least amount of people, at 5% and 7% respectively.
We asked people to imagine a miracle had occurred, and that society had changed to be wonderfully supportive. What would that look like?
Most of all, we dreamed of a society that shows us understanding and where we are safe:
“A social security system designed to support people instead of punish them.”
“First and foremost, people need to feel safe. Being free from violence and coercion is essential.”
Housing and real, supportive, social security were imperative dreams for many. We were saddened by the current state of society, when some people said their dream was ‘to be able to afford food’.
In a great society, we want connection with others, human rights and equity, respect and for society to stop pathologizing our beliefs, thoughts and emotions.
We dreamed collectively about what concepts would shape a wonderful mental health system. We imagined what it would take for us to disband the consumer/survivor movement because our work was done.
Our dream was that a wonderful mental health system would be shaped by compassion, love and the social determinants of health. It would be trauma informed and holistic. And it would address climate change and be accessible.
Not everyone could share in all of these dreams. This is understandable, as society has historically not listened to us, often hurt us, and showed little interest in our dreams. One person described this future society as “impossible, utopian and idealistic”.
PEOPLE AND VALUES
We asked what kinds of people we need to support us, and what skills and values they would have.
The two disciplines that were most often in people’s dreams were peer workers and therapists. We note that these are two of the least funded roles in the mental health sector.
The two qualities that we most often dreamed about were listeners and compassion.
Some individual dreams about people and values:
“Having special people with kind people skills listen, understand and believe your story.”
“People providing support would be those like ourselves, people who know what it’s like to live in this world, who have experienced similar issues/challenges and lived similar experiences.”
“Having people to talk to who don’t panic and go into rescue/ carer/ freak out mode. And who let you be.”
PLACES and SERVICES
We explored what kinds of places, spaces and services we might want in a wonderful future. Would it be anything like the system we have today? No, it wouldn’t.
The places people most spoke about were peer-run services, and this included many variants: peer-run respites, recovery houses, crisis centres, peer support groups, recovery colleges and retreats.
Many people dreamed about the importance of nature in an ideal healing space: gardens, trees, lawns, flowerbeds. Many also dreamed about light and windows.
Places that might be more familiar, but currently receive little funding, were respite, drop-in services, community spaces, learning spaces. Some people dreamed that the only place they should need is their own home.
A minority of people told us that hospital was the best place for them in a crisis. But these people spoke about the need for hospitals to be nicer, cleaner, with more light and unlocked doors.
These are some individual dreams:
“Safe. Quiet. Calm. Tranquil. Open doors. Light. Windows. Gardens. Warm.”
“Community spaces that are calm or a space to shout loud.”
“Yes, for those of us abused as children in institutions we need non-institutional spaces. Desperately. That means the physical environment but also the way we access services.”
“Therapeutic communities (both peer run and other), respite houses in the community, nature escapes, community support spaces (NOT health clinics, but literally places for community to gather to offer mutual support). Learning spaces to explore and understand diverse experiences.”
ACTIONS AND SUPPORTS
We asked people about the kinds of actions or supports they needed, whether that was by themselves or provided by others. This was the topic with the largest number of themes, which makes sense when we consider that:
- There are many pathways to healing
- Current mental health systems really only offer medication
Groups, classes and therapy were the supports that were most often dreamed about.
Victoria used to have a large community support system that provided many groups and classes, but these have largely disappeared since the advent of the NDIS. People wanted support groups, creative groups, therapy groups, peer support groups, nature activity groups, social groups, classes about life skills and recovery, and many more.
Not everyone dreamed of groups. Some people explicitly said that their dreams would be for individual support because groups can be difficult.
Therapy is also an impossible option for most of us, yet it is dearly wanted.
People dreamed about many different types of therapy, including trauma therapy, art therapy, music therapy, equine therapy, narrative and group therapy. Therapy is practically non-existent in the current public mental health system, Medicare does not support enough sessions for any kind of in-depth work, and so therapy is simply not accessible for most of us—yet.
Music and art were commonly spoken about as powerful supports, as was taking political action. People spoke about being consumer activists, Black Pride, the #MeToo movement and speaking out about child abuse and family violence.
Conversations and listening were also strong themes. Many spoke about the deep need to be heard be another person, to talk over what was happening to them.
Some people said that the best people were not people at all: but animals.
“Having dogs or cats in a space can sometimes do more than people to make us feel human & here again”
“Able to open up, ventilate, and relax… and they would listen…”
“It would be a place where I felt heard and understood without the shadow of diagnostics”
“Nurses should have to talk to the patients.”
We wanted to know how people would access supports and services in this wonderful future. This topic has fewer themes because the messages were very consistent.
Walk-in access was a dominant theme. We want to be able to just walk into a service and receive support. We want streamlined access, with no or much fewer forms and bureaucracy.
We want help when we ask for it. If we say we are in a crisis, we want to be believed, not assessed and sent away.
Importantly, we need services to be affordable, and open when we need them. Mental health crises don’t just occur between 9-5, and we want a mental health system that responds to this.
OUTCOMES IN OUR LIVES
Finally, we asked people to dream about how their lives would be different, if we could achieve a wonderful alternative to the current system.
People said they would be happier. They would feel accepted and cared for. They would have employment, justice and human rights. They would feel connected to other people.
Some individual dreams about how our lives could be different, in a better future:
“We will feel accepted and welcomed in the world, not judged, feared and controlled.”
“Free to be me and not hide in the corner. I could be a member of society.”
“Survivors would be empowered. We would be treated with respect and kindness and free from harm. Free from being re-traumatised by a system that does not understand the roots and causes of emotional distress. We would be safe and given hope of leading a meaningful life, free from suffering. We would have social connectedness and optimism. We would be validated and have the potential to heal and make meaning out of our lived experiences. We would be able to make sense of what has happened to us and be able to overcome the adversity so that we can thrive.”
WHAT WE DID AND WHAT’S NEXT
Why we developed The Declaration
The Declaration is an important part of VMIAC’s strategic plan, which includes a commitment to advocate for radical change.
The Declaration is important for many reasons. One is because there are an unprecedented number of royal commissions and inquiries into mental health, but what is common throughout is that the voices of lived experience are not being heard.
We also made this decision because we wanted to develop something hopeful and inspiring. We want The Declaration to be a beacon of what is possible.
We will continue to advocate about the things we do not want, like seclusion, restraint, compulsory treatment, detention, and violence. But The Declaration is the other side of the coin–it’s what we are working towards.
How we developed The Declaration
This first phase of The Declaration was developed from July – October 2019. We used multiple methods to gather people’s dreams, including online surveys and face-to-face workshops. We also established a private online group for people to discuss the merging findings with us and help cocreate the collective vision.
This was an entirely lived-experience-led initiative.
As at the launch, over 190 people have contributed their dreams and ideas to The Declaration.
The Declaration is a living document. We will continue to collect dreams and ideas, and we will revise the dreams as needed. We will also share more detailed results from The Declaration over the coming months.
Our online surveys will remain open, so if you’d like to contribute just follow these links:
Share your dreams about a wonderful mental health system: Link to survey
Tell us about your language preferences: Link to survey
We sincerely thank the many people who shared their dreams and their time. This was an inspiring process for many, but it was also emotional and painful for many.
We make a commitment at VMIAC to honour the dreams shared in The Declaration, and to continue advocating for our voices to be heard, and our dreams to be honoured.