How Can We Design a Better Mental Health System?
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We sat down with Emily Unity to get their insights into how we might create a more inclusive mental health system.
Emily Unity is a mental health professional and software engineer. Recipient of countless accolades, including the 2022 Victorian Multicultural Honour Roll and the 2021 Mental Health Youth of the Year, they identify as a queer, culturally diverse, disabled and neurodiverse young person.
What is your story and how did you get into this space?
My mum is a Vietnam War refugee and my dad is a Malaysian migrant. They came to Australia as young people and worked hard to give me everything. So I grew up hyper-aware of my privilege and the things I had that they did not.
In my family’s culture, mental health does not exist. As a result, I did not recognise that many of my symptoms or experiences were important enough to share. For example, my first memorable panic attack occurred around age four, but it was not until I was about 12 or 13 that I was diagnosed with an anxiety disorder.
After that, I struggled with various lived and living experiences, including domestic violence, suicide and self-harm, neurodiversity, eating disorders, being a young carer, homelessness, and my gender and sexual identity.
I went through various traditional therapies and medications, which helped to an extent. However, the catalyst in my recovery journey was finding peer support – people who understood what I felt because they had lived it. So many people are out there with propaganda saying, “it’s okay to not be okay,” but no one was genuinely ‘role-modelling’ vulnerability.
Online spaces were (and continue to be) places of healing for me. It was in those spaces that I saw diverse representations of mental wellbeing. In addition, I saw people of various cultures, genders and sexualities. As a result, I started using online spaces to experiment with identity and become who I am today – instead of the person I was trying to be when I was younger.
I started volunteering in mental health, albeit secretly, because volunteering is not something you do in a refugee migrant family. I graduated high school, went to university, studied software engineering, and then worked as a software engineer. But I felt like my heart was in mental health. So I kept volunteering and eventually shifted my entire career to the mental health space.
My first ‘formal role’ in mental health was as a peer worker, where I worked alongside people on their healing and recovery journeys. Together, we navigated the mental health system as equals. Through my work, I found that many young people preferred to engage with me rather than with a clinician with whom they did not identify in age, identity, culture or interests.
Currently, I work a lot more in strategy – improving services, shaping systems and building frameworks that enable people to share their own lived experiences. Most recently, I worked with the Royal Children’s Hospital, developing a lived experience, strategy and engagement framework where people can be paid for their expertise. I also sit on a couple of boards and advisory committees where I get to be part of broader conversations about how we can co-design systems that are accessible and inclusive for everyone. I am privileged to work with many fantastic people from different walks of life who sometimes have very challenging but often eye-opening views.
More recently, I have been excited to delve back into technology, focusing on the intersection of technology and mental health. I have been working with Meta and PROJECT ROCKIT to run lived experience consultations about designing the metaverse in a safe, accessible, and inclusive way for young people.
How might we design a better and more inclusive mental health system?
In my opinion, the primary imperative should be embedding lived experience into system design, which requires many traditional power holders to step back and ask, “Who are we missing at the table?” Lived expertise at the table holds people accountable and makes them consider things they would not have otherwise. Then, we should be embedding those people in every system and layer to keep solutions relevant.
With whom does that responsibility lie?
We have had significant government funding, but I am concerned about where the budget has landed. So much of it goes to the big companies, ignoring many of the lived experiences that are making changes. It takes humility and power relinquishing to say, “There are many gaps in my knowledge because I haven’t lived through it.”
What failures do you see within the current mental health system?
A primary problem is the siloing of systems and the creation of ‘missing middles’. Our understanding of mental health is so limited and specific that unless you tick certain boxes or present with certain diagnoses, no one can help you, and you must go somewhere else. People are scared to seek help because getting that help is so complex, let alone the inaccessibility of systems themselves and how unsafe they can be. Most places in Melbourne are culturally dangerous, and they are unsafe for many people with different non-traditional gender identities and people with neurodiversity. They have been designed by a particular cohort who do not have specific lived experiences or have not considered them. We have not been inclusive with how we have shaped our services, and we are not inclusive with how we view mental health. Until we respect lived experience as expertise, I do not believe throwing money at the problem will solve it.
How would your ideal service operate?
My dream is the no wrong door approach. No matter where you ask for help, you will be supported to be made aware of all the services available to you, and you can either do it yourself or connect with a peer worker to help you navigate those options. Wherever you are, they will have those options for you, and you will get to the place you need.
Considering the many competing interests, I do not think we can get everyone to work under the same umbrella. However, I do believe we can get providers to acknowledge that they work in tandem with other services and that sharing resources and people can be good. So I hope the government puts more funding into bridging those service gaps and making our support systems much more collaborative.
Do you think implementing those changes is a federal responsibility, or should it be left up to the states?
I think it should be on a federal level. It distresses me that one state is much more privileged than another when we should all have the same rules and live by the same standards.
What are some positives of the current system?
We are seeing a massive shift towards lived experience, which is excellent. However, there still needs to be a lot more movement. It is up to people in traditional power-holding systems to create space for us to shape that change.
Can you talk a bit about the Royal Commission?
The two main recommendations that stick with me are establishing a dedicated lived experience body and the focus on children and youth mental health.
The system change has been difficult because the system is disempowering. You feel you have a right to speak up and are often the only one. Peer networking prevents you from gaining the critical mass necessary to create a movement. Our voices will be amplified when they establish an agency where people are all together.
Recently, there has been a focus on youth mental health. So much work has been done, particularly with young people aged 12 to 30. However, we often do not engage meaningfully with children under 12, despite their health and inputs being essential. We keep talking about ‘early intervention’ whilst ignoring the critical population.
The 10-year plan is a welcomed mental health initiative of the Victorian Government. What do you anticipate as being its pitfalls moving forward?
Honestly, ego. And when I say ego, I mean a refusal from traditional power-holders to display humility and admit when their plan is not going too well, when they have missed the mark, or have not involved too many people of different identities. So we can put in these excellent reports and funding announcements, but until decision-makers are willing to speak up and say, “This is not my place anymore; here is where I could have done better,” we will not see that change.
What can we do as individuals to better support the mental health system?
Learn about the power of your expertise. People who have experienced mental health challenges or recovery can use their experience to inform the future of the mental health system. It is not just people who have direct experience but also those who have cared for or supported loved ones. I do not know anyone who has no lived experience. Everyone is affected by mental illness. We each have the power to engage in the conversation and incite significant change.
