Dr. Jill Bennett, Scientia Professor and Australian Research Council Laureate Fellow at the University of New South Wales
How can a “community of care” model be the future of mental health? Dr. Jill Bennett, a Scientia Professor and Australian Research Council Laureate Fellow at the University of New South Wales advocates for demedicalizing mental health by emphasizing cultural and community-based solutions. She shares immersive media projects from her book, “The Big Anxiety: Taking Care of Mental Health in a Time of Crisis” that empower individuals through creative approaches to working with trauma and mental health. Her vision for the future includes an inclusive experience that provides solutions for those marginalized by conventional approaches.
Dr Jill Bennett is Scientia Professor and Australian Research Council Laureate Fellow at the University of New South Wales, Sydney [UNSW].
A specialist in arts-based approaches to trauma, mental health and engagement design, she is Founding Director of The Big Anxiety festival– an award-winning mental health arts festival – and of the Big Anxiety Research Centre [BARC] at UNSW.
Through her Felt Experience & Empathy Lab [fEEL Lab], she also co-designs immersive media and virtual reality tools for communicating and working with lived experiences of mental distress. Through BARC she has advanced trauma-informed, experiential programs, foregrounding the design challenge of creating safe environments for exploring and transforming traumatic experience. Her books include Empathic Vision (Stanford UP, 2005) and most recently,The Big Anxiety: Taking Care of Mental Health in Time of Crisis (Bloomsbury, 2022).
Show Notes
Dr. Jill Bennett shares her background and an arts-based approach to healing trauma. [03:04]
What is the award-winning mental health arts festival, The Big Anxiety? [04:50]
Dr. Bennett discusses her book, "The Big Anxiety: Taking Care of Mental Health in a Time of Crisis," and how the First Nations approach to health is culturally connected. [06:56]
What happens if we stop diagnosing mental health through symptoms and instead look at a person’s experience? [08:58]
The Edge of the Present is the world's first virtual reality suicide prevention. [12:50]
Why demedicalize mental health treatments? [18:04]
Peer-led mental health trauma support outside of the traditional medical model can empower people to flourish. [20:21]
How is it beneficial not to impose diagnostic criteria or to label people in any way? [24:20]
Are there downsides to demedicalizing mental health? [29:15]
Why should we change the way we think about time? [33:25]
Transcript
Bisi Williams 00:04
I'm Bisi Williams, you're listening to Health2049.
Dr. Jill Bennett 00:08
It's not the lead facilitator and a few on-call counselors or clin psychs who intervene when things get tough. The idea is that the community is sort of skilled up to take responsibility and to hold the space. So we can create this community of care as we sometimes call it where people are in a position to support others.
Bisi Williams 01:39
Hi, I'm Bisi Williams and you're listening to Health2049. Today we'll explore the question, could the future of mental health be demedicalized? My guest today works mainly with trauma survivors, First Nations people and those whose needs have not been met by existing services. Dr. Jill Bennett is Scientia Professor and Australian Research Council Laureate Fellow at the University of New South Wales in Sydney, Australia. She's a specialist and arts-based approaches to trauma, mental health and engagement design. She's founding director of an award-winning mental health arts festival, The Big Anxiety and of The Big Anxiety Research Center also at UNSW. Through her felt experience and empathy lab, she also co-designs immersive media and virtual reality tools for communicating and working with lived experiences of mental distress. It is my pleasure to welcome Dr. Jill Bennett to Health2049. Jill, welcome to the show.
Dr. Jill Bennett 02:54
Thanks, Bisi, good to be here.
Bisi Williams 02:56
I'm so delighted to have you. So first of all, could you tell us a little bit about your fascinating background?
Dr. Jill Bennett 03:04
Yeah, well, as you say, I have a background in trauma and arts-based approaches. And over the years, I've developed what we always refer to as a bottom up approach to trauma. And we do that through public engagement of all kinds. We work with communities, we work through our festival, which is carefully curated and unlike a lot of festivals, and then they travel around. It’s very much about responding to community needs. Often we do work with leading artists and designers and interdisciplinary teams to sort of iteratively test out ideas and programs but always really driven through communities and lived experience. I think that's really the innovation that we're pushing thinking about what can a cultural approach that comes from people really do
Bisi Williams 04:16
What I love about your festival and how you describe it, is that the iterative approach and keeping it consistent. I suppose when dealing with anxiety and mental health and so on that the need for constant but surprise and delight is always interesting and even though it's a fun festival, it's actually built on research. So you don't really go out on a crazy limb, you do research when you decide what you're going to do,
Dr. Jill Bennett 04:50
Yeah, absolutely and I think you're right and if you talk about an arts mental health festival people think it's this cheery kind of stuff that is just improving people's mood in this kind of superficial way. Or they think about representing trauma in ways that are quite scary and distressing. And ours is neither of those, it's really working with people with lived experiences to fill a gap. So you mentioned that I work principally with people who say they haven't been well served by existing services, they don't access them, they've had bad experiences, they're just not there. And they're not abundant enough. So we typically will go to communities, research people's needs, and think about what we can co-create together that might meet those needs. And it could be a technologically-based virtual reality experience, or a series of programs that are enjoyable and awesome. But usually we've put quite a lot of research into that, so that we think very carefully about what the mechanisms are, we work in a trauma-informed way, always thinking about how to build safety and trust and agency, and really make collaboration work so it's not like a treatment, it's something we do with people rather than to people.
Bisi Williams 06:38
That's a very important fact, Dr. Bennett, I love that idea. I also want to talk a bit about your new book, “The Big Anxiety: Taking Care of Mental Health in a Time of Crisis.” Tell us about your book.
Dr. Jill Bennett 06:56
Okay, so that brings together discussions of a number of the projects that we've been running and developing through The Big Anxiety Festival. So for example, there are contributions by First Nations practitioners who are absolutely at the center of our program. And the reason for that is that in Australia, we're very lucky to have First Nations cultural tradition that makes no separation between mental health, health and general well-being and the arts and culture. So in order to be well, communities have to be functioning, people need to be connected and feel the safety of community. I think looking to those models is really inspiring for those of us who are caught up in a medical model, that sometimes delivers good things, but generally, it kind of abstracts us from community looks at individual kind of disorders and symptoms, and all well and good if we have a treatment that makes us better. But very often we don't, and those feelings of alienation and disconnection, just continue and cycles of trauma continue. So we work on the basis that we really need to reintegrate people into communities, and that the way we approach health has to be culturally connected.
Bisi Williams 08:38
That's amazing. That idea of baking wellness and health, culturally connected, is so inspiring. I'd love for you to explain your vision for what health and wellness will look like in the year 2049.
Dr. Jill Bennett 08:58
I think, first of all, mental health will be something that exists apart from our medical model. So at the moment, it's kind of an offshoot of the health medical system. What we need to do, I think, is to really build a cultural vision and cultural approaches to mental health and well-being. I think this is a conclusion that the medical sector itself is reaching. The WHO says something like 80% of people worldwide who are deemed to be in need of mental health care aren't able to access the support they need. So to me what that says is not just that we need to pull people into existing supports that they're fine as far as they go. But there's a huge issue of engagement and disengagement. So we need to be starting from a different place, we need to be going out and connecting with people in communities, and looking at first of all the psychosocial determinants of trauma, so called mental health disorders. So if we do that we're committing to understanding mental health within an ecology on the ground. And so any intervention has to take account of all factors. It has to be situated, it has to be community-based. We've been having some success with that already working in communities where we sort of cut through asking people what's wrong with them, and we're looking at what happened to people, and how we can empower them to make change. So in that model, we may take insights, obviously, from psychotherapy and research into trauma-informed practice. But we cut through the need to diagnose people and identify symptoms, because we're looking at experience. I think this is where the arts and culture come in, because you have actually a much richer language for describing embodied experience and emotional experience, and all of those sort of existential experiences of alienation that are, in fact, the symptoms of trauma and depression. But if we work with those feelings, and work on shifting them, understanding those feelings, and working collaboratively to change them, I think we can use all sorts of resources and tools that haven't yet been imagined within the health sector. And crucially, we can think about how we embed them at all levels. So if people are not living there, suburb, town, house, apartment, bedroom, or street, we can work from where people are, and what's going on there and redesign all of the mechanisms for delivery. And I think that we'll have solutions that don't look at all like treatments, in fact, the ones that we have today, deliver through clinical service providers.
Bisi Williams 12:38
I think that's amazing. And I would love for you to paint a picture of what that could look like. I mean, you've done some work with VR and when you say you bring it to us, tell us what that would look like.
Dr. Jill Bennett 12:50
Absolutely, so and you asked me a question about the book as well, and I mentioned one dimension. But of course, we discuss a lot of these projects in the book. So one of the projects we discuss is called Edge of the Present, which is, as far as we know, the world's first VR suicide prevention. And that, as with all our projects came a bottom up through working with, in this case, young men who were survivors of repeated suicide attempts. And what happened in those workshops, we arrived at the idea of working with technology, because young men were making it clear, they didn't particularly want to sit around and talk about feelings. They weren't signing up for these kinds of CBT programs where it requires a whole lot of cognitive discipline and commitment. So we thought, well, let's think about designing something that people actually want to do. But that doesn't mean simplifying at all. We actually then in the workshops, introduced people to a whole lot of research around the mental imagery of suicide, what does what does it feel like to be suicidal? What is actually in your mind? We did a lot of work on data that suggests that there are problems making affective and emotional connections when we're suicidal or severely depressed. So in memory, it's hard to think of things that happened with any kind of emotional intensity or passion and consequently, it's hard to imagine ourselves into the future with any sort of enthusiasm or feeling or passion. So it tends to be this really flat affect. So we knew that one of the things we wanted to do was to create an intensity of experience so that something could be felt. The other thing was the title of that project, Edge of the Present, came from one of the men in the workshops, who said, the feeling is like being at the edge of the present where you just can't move forward, you can't see any future. So the other thing we were working on was how do we invent the future, the next 5 or 10 minutes, just by taking small steps. So we wanted to encourage, doing sort of small actions, but receiving some reward for it. So what we ended up creating, people can see this on online in a video, is a piece that is an roughly 8-minute experience, where you put on a headset, you're in a very plain room, nothing much there, door, window and a table, you initially see a facsimile of that room. But as you move around it, the room transforms, say, open the door, or the window, and massive transformations happen to you in a rainforest, you're on a beach, you're on a mountaintop, and it's just relentlessly gorgeous, then what we found was everybody's mood improves. And we also sort of measured people on the hopelessness scale to see if people became more hopeful. And they did, especially if they were coming from a really low baseline. And the point of this is not just to make people feel good, but it's a series of small actions, big reward. So you're actually making this happen. And that's quite an interesting project. Because although we tend not to focus on the short term measures, because they often don't mean very much in themselves, but this is really an exemplary project to me, because it opens up the potential for having this kind of intervention, absolutely anywhere, in your bedroom, in the workplace, on a building site, anywhere, what if we could fill social spaces with these kinds of activities that cumulatively enable people to take action, and to actually shift the way they're feeling.
Bisi Williams 12:51
I think that's really fantastic. When you talk about in your vision, that mental health will be largely demedicalized and you start to meet people where they are, and you use art, and wonder and community and co-creation, to start to reimagine your future, I know why you're confident that your idea and vision can be achieved in 30 years, but can you sort of explain to us how we're going to transform?
Dr. Jill Bennett 18:04
I do think we need a paradigm shift. So I started off probably more tentatively, trying to build partnerships, and everything's always about partnerships, what we need is a really integrated process. But I also think partnerships can tie you up, if you partner with a health partner, and you have to go through a whole series of approvals and trials and measure yourself by the standards of what works in health, you can end up in the same place and not get very far. So my vision is very firmly that we have to build this cultural approach outside of health. And by that I don't mean that we are in any sense antagonistic to people doing fantastic work in health. I think we can always have partnerships at every level, but I think this idea of growing things from the ground up, has to really kind of stand on its own. And there's always going to be lots of transactions and everything's going to be interdisciplinary. We will borrow what works from anywhere and if a neuroscientist wants to collaborate, that's what we do. We have lots of these kinds of collaborations. But actually in the festival, we evolve this tagline that is people plus art plus science.
Bisi Williams 19:39
Which I think is really quite marvelous and really quite striking. And what I love is working adjacent to all the other institutions but recreating and actually making space for all folks who are interested in healing from within and from without, and with the community that they can all play a role. And I love what you're saying about this co-creation and world building. And from your perspective, and from the work that you do, can you just share why your idea and the work that you do is important, and I know it is. Then can you tell us how it makes the world a better place?
Dr. Jill Bennett 20:21
I mentioned the project that we were doing last week, we've been working with this community in Queensland all year, coming back and doing workshops, and then making media and film with them in between times and what's happened there is, people are really saying that they're finding a way to go back to the trauma, to work with deep feelings that are deeply distressing that they haven't really been able to shift. And so fundamentally, it's opening up a safe space to do that, and having some skills around it. But again, it's not clinician-led, it's peer-led, but saying that it's by expert peers who've been working in trauma support for a long time. And it's using creative resources to visualize internal processes, but also to visualize shifts. But it's really about building that empowerment. And when I see that happen, it's especially in this case, I realized that this is not just as a sort of one off creative imagining, but it's really a process that can be generalized, because we're working on intergenerational trauma, which is something that actually the medical model doesn't have much to say about because it's very hard to identify and understand the mechanisms by which trauma is inherited, you can't sort of see that under a microscope. But we do know that First Nations communities and in Australia, along with many others around the world understand it, because we see that trauma revisited, we see how hard it is for traumatized parents to parent in a way that ensures children don't inherit these high levels of anxiety, alienation, disaffection, and trauma. And so the solution is to build the capacity of the community to have insight into what's happening and to support them to be able to deliver effective levels of support and to actually be able to sort of self validate, I think that's really important, often we carry levels of shame and the feeling that we are ineffective and can't overcome the distress that we're feeling but but all of us can if we are supported to do that, and enabled to have that kind of agency over our own lives and the lives of our families. So watching that happen is really empowering and you realize in seeing it, that actually, the processes are known and they're simpler than we imagined. But they are processes that aren't allowed to flourish in systems that simply pathologize trauma or the effects of trauma.
Bisi Williams 24:01
I'm going to ask you a bit more about pathologizing, but I also want to ask you about, you have a theory, which I support, about the doing rather than being done to. Can you talk about that in your work and in the communities?
Dr. Jill Bennett 24:20
Yeah, I think we're actually very open, as I say bottom up always and so we never know what a project is going to be until it emerges. But we do work with some irreducible trauma-informed principles, and those would be ones that are widely recognized as trauma-informed but we prioritize building safety, trust and trust means, often removing hierarchies and being non-judgmental, so listening rather than labeling. So at that point, it's very useful to us not to impose diagnostic criteria or to label people in any way, to just work with the experience that people bring. Then to promote choice and collaboration. So those will be the other other pieces and promoting choice means really enabling people's agency and opportunities, and then working together collaboratively. So everyone is doing with rather than, you have some facilitators or experts doing, too. And I think the point there is that in the event we ran, last week, there was actually a wonderful First Nations facilitator host Marianne Waltke, who's part of our center, and she's actually a trained nurse and a midwife and has worked for many decades on sort of frontline trauma support. So she was, in a sense, the lead facilitator, but she is at pains to say no, there was no leader and that process works because what we build as a community of care where it's not the lead facilitator and a few on call counselors or clin psychs who intervene when things get tough, the idea is that the community are all able and that they're sort of skilled up to take responsibility and to hold the space. So, not everybody needs to be doing that at the same time. You can take time out, it might not be the right day for someone to really listen and absorb the experience of another. But that doesn't matter because within a given group, different people can take up that role. I think that happens when the community of care is working. I always remember, we did a workshop a few months ago in that community and there was one woman who, in mental health terms, is really significantly ill, lots of diagnoses, but very disaffected. And she came up to me at the end, and she was very pleased because the event had gone well for her. And she said, Oh, you know when you said there's a counselor in the room who's on call, if anybody wants to talk, I made a note to avoid that person. I love that because, she said it as a joke, her whole thing had been, ah, I'm so over professionals. But the serious side of that, and what was really pleasing, if you get that kind of comment in a feedback survey, is that what it's actually saying is we didn't need to go to a professional because we the community, were functioning, I felt safe, it was working, we can create this community of care, as we sometimes call it, where people are in a position to to support others.
Bisi Williams 28:40
I love the term community of care and that it's horizontal, because ultimately you want everyone to be in community. This is really important and community in an authentic fashion. So given all of this positive research, feedback, actual people thriving and building communities, do you imagine that there could be any downsides to demedicalizing mental health?
Dr. Jill Bennett 29:15
No, because there is such a big gap so we have to put something in the gap. We have to be operating across community spaces. Now, I suppose the knowledge is held tightly by the medical community and they might say, well, there's all sorts of risk. In one of the recent events we did in Melbourne someone came and joined one of our long tables, which was a discussion on suicide and trauma. She told a story where she'd been discharged from hospital and she had gone into a space that had a sign up saying community mental health center, all welcome. She went in and had a five minute screening and was told she was too high risk, and so they wouldn't accept her and that was absolutely devastating. This is the way this kind of triage works, it's too high risk so there's nothing, just wait until you're an emergency case, and then you're admitted to the emergency department. So what we're thinking is, we need to step in where there isn't care. And if we do that, in a respectful, trauma-informed way, there isn't much that can go wrong. We do a lot of work in these workshops around triggering and projection, people have a propensity to be triggered, and to feel marginalized and left out and let down and everything else. This is not just people who are diagnosed with mental illness, it's every one. So we always place an emphasis on reflective practice and catching those feelings early. At the point at which stuff's coming up, you're a little uncomfortable, you want to get out of here, of course, we have a lot of bodywork, massage stuff going on, so you can go out, you can process, you can come back. But we always say don't rush off, we do have a principle actually don't rush home, we say just touch base before you do that. Because if you're triggered, the thing we can do is to support the processing of that in a reflective way. Then you're triggered in a good way, because you learn to regulate and to manage that triggering and that's something we require of all the practitioners and facilitators as well. It's all in it's, there's no difference here. You're not there managing a bunch of patients with thinking about how we interact and what creates a safe environment all the time. So that would be the danger that people are triggered. But it's not a danger if we build into practices an awareness and learning how to be with others. And I think that's not rocket science. It's a long project and it requires listening and attentiveness and listening to ourselves. But it's something we can build into everyday practices, it's not specialist knowledge. So that will be something that I think we can all access.
Bisi Williams 33:05
I just want to touch on one other thing that I've just learned from you today, that time is very important. Designing the time. What is it about our time now, how would you design time differently from a societal perspective?
Dr. Jill Bennett 33:25
Yeah, we need more space and time, and I have been caught up previously in those cycles where someone gives you a grant or something to do something, and then you have to evaluate it, as soon as it's done, do a survey, is everybody feeling better? And maybe they are, often they are, but really some of my best results are two weeks after we've done the survey, someone calls up and says, big things are happening. I've cleaned the house for the first time in two years. This is why we have some of these projects where we work with a small town, small community and go back and see what's happening. Because I think we get caught up in what we think is evidence-based when we really need to have a different lens on what change is and so we need this bigger picture, actually, we need to look at what's happening with people in communities and how it can be sustainable. I think that is about changing the way we think about time. We also think about what we can deliver in a really short timeframe. So especially with our VR tools, we think about what can be delivered in 15 minutes so that people can access it when they have a break at work. People don't have to go far, they don't have to prep. They don't have to give up a lot of time, that's not intrusive, but if we can put this in the right place, give people access, and then they can come back for more and access other resources. That's really important as well. It's not like signing up for a big lengthy, expensive time-consuming program. If people don't have the time, okay, we'll we'll start with five minutes, we've got something.
Bisi Williams 35:42
Okay, that just warms my heart. I'm sold and I can't wait to participate in this future. I just want to thank you, Dr. Bennett, for sharing your vision for health and wellness in the year 2049.
Jill Bennett 35:59
Well, thanks Bisi and I'm really keen to work with you more to and before that timeframe. Let's start now.
Bisi Williams 36:07
I'm agreeing, I think nothing like the present, so I'm 100% with you on that.
