September 05, 2022
Emily has over 14 years as a lived and living experience professional. They have a diverse portfolio focusing on diverse identities, including LGBTQIA+, multicultural, neurodiversity, and disability.
Their work has included media, policy, service design, training, research, workforce development, and government relations. They ground their work in peer values and their postgraduate in psychology.
Emily has won numerous awards in the mental health space and, in all seriousness, is probably the most accomplished person I have had the pleasure of interviewing.
Thank you to Emily for their time.
To learn more about Emily visit - https://www.emilyunity.com/
Welcome to the live experience. I'm your host Joel Kleber. On today's show, I have a really special guest and their name is Emily unity. Now I normally write a little bio, or normally get everyone's LinkedIn profile and describe that and read that out for you to know who they are. But with with Emily, that just will not do it justice. So please check out Emily youtube.com. For everything that I have achieved. It's quite astounding. Like when I looked up Emily and researched them a bit more. I just could not believe how much they have achieved. And it was just made me feel so inferior, to be honest. And I was just like, What the hell am I been doing for the last 34 years, and someone like me who has achieved so much it was, it's very inspiring to talk to someone like Emily, and just an amazing, amazing person. I think you get a lot out of today's interview as well. But please check out Emily unity.com. And a big thanks to Emily for sharing her story and lived experience, but also released another interview. This was this week or last week with Tara Stark, who was a lawyer, young carer as well, and also a director on the board, we set my foundation and Tara showed her story or background with apparently mount on us. And I think it's a really good and important story to hear. So please check that one out. If you do want to come on the show, I'm looking to talk to anyone and everyone and and your story is valuable. So please reach out to me via lived experience podcast.com I really do hope you enjoy today's episode. If you do, please consider leaving a review as well which you can do so via the platform you're listening to hope you enjoy it. And a big thanks again to Emily unity and check out Emily unity.com.
So I'm joined by Emily unity today. So thank you very much for making the time to do this. And I I discovered your profile. Basically, I think you did an interview with someone on LinkedIn. And I thought oh, look at what you've done. And it was just I looked at your website, all that sort of stuff. I thought wow, this is amazing. Someone I've got to talk to so I don't know maybe talk maybe rather than me. extended by of everything you've done, people can go to your website, Emily unity.com. To have a look. But do you want to talk about your yourself first or just introduce yourself regarding your lived experience? And, and why you're passionate about mental health? Medical? Yeah, sure. Thanks, Joe. Um, so my name is Emily, my pronouns are they them? Honestly, getting involved in the lived experience space was kind of a accident, like a very happy one. I feel like I accidentally got involved in advocacy through being through very, like, difficult experiences of my arm. So I was first diagnosed with mental health challenges when I was about 12, or 13. But I definitely don't think that was the first time that I experienced them. I grew up in a like quite culturally diverse background. So my mum's a Vietnam War Refugee and my dad's a Malaysian immigrant. And they both didn't really have the words for depression, or anxiety or mental health, in that language is so yeah, I grew up without any sort of mental health literacy, I guess, and help seeking was really discouraged, particularly within like a wide society. And I just didn't really know what to do when I first started struggling. And it's really been through like, really difficult experiences of first going through those types of things that I've managed to just get into the system and kind of had these less than ideal experiences, I guess. I think it's through those sorts of hard journeys that I've learned to, like, actually meet people that understand me for who I am. And it's that sort of shared lived experience that I found as being the most powerful thing for my hope and recovery, like medication. And traditional therapies have definitely helped to an extent. But the main thing for me is that peer support that shared that experience, and that's what brought me to this type of work. So yeah, I've been volunteering in mental health since I was first diagnosed. So from around age 13. And now I work as a mental health professional and kind of designing services around like, how do we better engage with people with lived and lived experience and mental health challenges from a variety of backgrounds, and kind of use our experiences to inform those service designs to make sure that like, things don't happen the way that they've happened to us. And we're really like, making sure that there's nothing about us without us. Awesome. And you've also got a heap of awards as well. So I'm not going to embarrass you already, I thought was quite impressive. And I think there was one which was the mental health was his mental health first aid Australia one. Yeah, yeah. So I think like, particularly a lot of my mental health advocacy was like within youth type work. So I've got a couple of like youth awards. So the next I think young people are really missed out of the Mental Health conversation a lot of the time. That's what appealed to me to talk to you about that, because that's what I noticed is I saw the youth stuff, and I thought, well, if I had a bit more courage or bit more brains when I was younger, I would have done something similar but I'd be later on and I'm starting to do something but in regards to what you've done, you've Yeah, you said for the young people and, and you that's where you've been really involved so maybe don't talk about at 12 or 13 Did you when you first had challenges did you know what to call or what? How'd you work that out that that was what was happening to your what was happening? Yeah. So honestly, I'd say like the earliest meant Write that I have in terms of something that I would describe as like symptomatic, if anything was around age six, where we were in class in school. And we were taking turns like reading out of a book. And I remember like counting the number of people in front of me, and determining, like which passage I was going to read and practicing that over and over and over in my head. And then I started on a word, and I thought about it for the rest of the day, and found it really hard to sleep for the rest of the week. But of course, like that sort of stuff just really didn't get caught at the time. And I just went on to experience other things. So other things that didn't get picked up. So I was growing up in a very domestically violent household, I had different experiences with like eating disorders, and struggle with my gender and sexuality. And it's only like, when I was 12, or 13, where I had this very big breakdown at school, it was very public. And that was after like, a really hard night at home. And like I had struggled with like physical health as well. So everything just kind of came to that sort of mass, or that that end where I dropped the mask. And if it weren't for that, I think I would have just still kind of kept pretending I guess, I just felt like everyone else around me, could just do everything. And I couldn't, that everyone was expecting me to just kind of get on with it and be this, quote unquote, perfect human, or their idea of perfect, and it was just very tiring. And it only got to that crisis point where I was referred to the school psychologist and then referred to an external, external psychologist, and then a psychiatrist and kind of put within, like different private and public systems. And going through that type of like, General, I guess, more traditional journey of diagnosis. But yeah, if it weren't for that crisis end, I don't think I would have ever gotten the help that I needed. And I'm very thankful that people were able to pick that up at the time and refer me to the right people. But I think that's why I'm so passionate about youth mental health is because so many of us go through these types of experiences, and we all are sort of just pretending that everything's okay. And it's only until someone really notices and really questions it with a compassion and creates that safe space that we can open up about and catch it early before it gets to that really pointy end. Okay, so you had to have almost as you said, you had that broke down moment. And then other people got involved. And how's the system? From your perspective, once from a 12 or 13 year old? What was the what was the process like? Or what were you What were you getting help me, honestly, like, very overwhelming. Like coming from a background where, you know, I couldn't talk about my emotions generally, let alone like anything health wise, or mental health was even more stigmatized, like within the community that I was growing up in. It was horrifying, I guess, like, within the culture that I grew up in as well, like, you're either quote, unquote, normal, or quote, unquote, possessed. And I thought that there was something really, really wrong with me. And I was never meant to get better. And I had been like, labeled with, like this diagnosis, and that that was going to define the rest of my life. And I think it was something that, you know, wasn't just me making it up in my head, there were a lot of like, discussions around it as well, like people around me were worried about my career. And I'm 12 at this point, like, I'm still a junior school, I'm really worried about like the rest of my life being determined by everything that's happening in this one moment. But I think, as like I was sort of given to different psychologists, who just didn't seem to really understand different parts of my journey, because I wasn't able to explain it, because I didn't have the language, it was just really hard like, going from place to place feeling like I was the thing that was broken, because if I didn't fit into their mold, then I must be the problem. And I think that's why I'm so passionate about what I do now is that young people are not the problem, the system is just really quite fragmented. And people don't get the help that they need. And they don't get the right like, connection to the pathways that they need to seek. And it's only through like, really a lot of perseverance and trying out different things that you actually get to this point where you find out what works for you. And what worked for me was, well, a mix of things. But it was really, like a big catalyst is finding peer support and finding that shared experience. And for me, that really motivated me to think hey, what else haven't I tried? Like these people who say, like, all these various other things have helped them? Maybe I'm not the problem. And maybe if I don't fit into this, like, if I don't suddenly feel better after this one hour session talking in a room, then there's something inherently wrong with me if that makes sense. Yeah. Now, what was your What was your family's reaction to this? I have had another I've had a lady on Zoe Car Talk. We talked a bit about the multicultural side. I don't think it's something that's talked about or thought about a lot. So in regards to your your background, and obviously they do cultural differences with with mental health and, and that sort of thing. How was that or do you want to recall that? Honestly, so I can't claim what it's like to be refugee at all. Like I grew up in Australia, where my parents had already immigrated as teenagers. And so I grew up speaking English as a first language, but being around like predominantly white people and going to a very privileged school, I didn't really see any people that really look like me. So I felt just quite disconnected from everything like I was too Asian to fit in, but too white to fit into my parents cultures as well. I think like there's a lot of intergenerational trauma that happened from there. And there's a lot of pain that they weren't supported with as well. Like my mum escaped the Vietnam War when she was 13. And she didn't understand what trauma was until I started going through therapy for my PTSD like that is a wild concept to me. And I think like that sort of generational distilling of like, understanding of mental health just really passed on to me. And it was something that I really wanted to work on to make sure that I didn't pass it on to anyone else as well. You mentioned that PTSD, and I think it's something that's not talked about enough. So you want to talk about PTSD and the treatments as well, because I think most people will have some sort of traumatic event in their life, it'd be different a family member, they've seen something, whatever it is, and it's something that not, you know, we just tend to think of maybe only war veterans, or people like that, who get PTSD. But imagine talk about your perspective and PTSD, and they help you go for that and actually help, how that helps you move forward and have a better. Honestly, I think I didn't really understand the sort of signs of my PTSD until I was diagnosed with it. I think. So when when I was 12, I was diagnosed with depression, anxiety, which I think is like a very sad sort of cover to be diagnosed with for some reason. And then like, as more and more diagnoses came on, I just kind of felt more and more tired. And I got worried that like, you know, when is this going to end. And I felt like each label was like a heavier thing. And PTSD was, for me, it was like one of the harder ones to get through, because that's what I noted, as you know, like something that like war at war veterans had gone through. And like, I felt this huge imposter syndrome and be like, what I've gone through is nowhere near like, what some people have gone through, like, I can't, yeah, I felt like I wasn't deserving of this diagnosis or the help that came with it. But I think, as I've become a lot more okay with myself and my recovery god, I've learned that it's something that is actually there's a lot of ugly strengths within that as well. Like the strengths within each label that I've been given. And each experience I've gone through, even if they're really challenging, like PTSD is something that for me, like, I will, I will go into situations I will get triggered, but I know how to handle them. Now, it's not something that I feel like I'll ever get over, but it's something I manage. And the strengths that have come from that is that I'm able to connect with other people through their sort of shared trauma. And I think that that connection, or shared experience is something that's so unique to people, they've only lived through that. It's, it's so hard to say it in such a positive light now, and it was something that I just really feared earlier on. And I just I couldn't accept about my own identity. But I think now that the trauma that I've gone through, it doesn't define me. But I manage it on a daily basis. And it's something that I can see like, I can see the connection and the strength in it. And it wasn't the trauma that made me stronger. It was what I did with it, and like being proud of yourself within that. Okay, well, when you say manage it, how did you How do you manage it? Like, what's some advice for managing PTSD? I think a lot of I think it's a big problem. I think a lot of people's circumstances in their life, let's say if they're into alcohol, drugs, whatever they do, it's up to them. And I think a lot of it, most people could trace it back or it could be traced back to some sort of advanced incident, something from childhood or whatever it is, it's it goes unresolved and it goes into all these behaviors. So maybe didn't talk about how you deal with your PTSD in regards to what are some things that you've done, or what helps you with that, honestly, for me, like, it's a really big mix of things. Like I've been through very traditional type therapies, there's a lot of talk therapy they've come with, with PTSD type training. There's also there's, there's one that I tried literally, like last year, because something suddenly happened and particularly around like domestic violence last year, and I tried a new tribal trauma therapy. And I have to say, like, I wasn't quite sold on it conceptually, even after like so much time in therapy, but there's this thing called EMDR, which is like, they wave this like light or a finger in front of you. And it kinda like tricks your brain into thinking like this is a safe place like you can relive the memories without them having them like roll your life going forward. And I think like that's something that was really powerful and I started learning like different strategies, whether they be creative or grounding. So like I have these anxiety rings that I spin all the time and they definitely kind of like sensor really bring me back to the moment and think like, what is actually happening right now like how all do I feel in this moment? am I reacting to what's happening now? Do I kind of feel reminded of something that's before I think being really aware of the situation and your triggers. And what you can do about it is the main thing for me, like most of my trauma has kind of come from places that I feel entirely out of control. I feel like frozen in place, I feel like I can't do anything about it. But I know that like, now, if I get triggered, that's not the circumstance anymore, I have these strategies, I feel a lot more empowered to actually control my own narrative. And I don't feel weak anymore, which is like, it's just such a fantastic feeling to kind of celebrate the recovery that you've gone through and that each trigger that you go through, you can manage it a little bit better every time. I think it's very impressive and very admirable that you'd so self EQ, self actualized to actually have things like anxiety or anything, you've got all these things in place, like a lot of people probably wish they do, but don't have the same the courage, but they don't have the Yeah, maybe self actualization, or they may let's use the word courage to not do that. So I think it's very courageous. Obviously, very good. self actualization to actually know that a lot of people probably have, I think, and they probably need to Yeah, I honestly think like, it's, it's like lack of knowledge and resources like I've, I've been so lucky to. Well, obviously, there's a lot of work that's gone into as well. But I've also been very lucky to meet the right people and have the right things around me that I have access to those sorts of things. I think that's why it's so important to like, really increase our knowledge of mental health literacy, that it's so much beyond like, one to one to talk therapy, that it's beyond just medication, and that we can have like, and create healing everywhere that we go. Because for me, like healing from trauma is not just within those one to one sessions, like I walk out of there, and I might see something on the street, and I will need help. And I think it's What can I do in that moment? How can I be there for myself when other people aren't there? Like it's? Yeah, creating healing everywhere is such a wild journey, but it's such a fulfilling one. That's all stuff. Well, what are what is out there for people beyond let's say, Talk therapy you've just mentioned? Well, you mentioned the AMA, what, what is B? What else is there out there for people? I think for me, like, possibly the biggest healing is peer support. And I think those is just kind of the realization, you know, people say, you're, it's okay to not be okay, all the time. But I think that there's a still a lack of kind of visibility of people who are actually showing that they're not okay, and demonstrating a role modeling that real vulnerability. And I think that that comes through peer support for me, like, meeting someone that's really real with me about their experiences and seeing with them, like, oh, my gosh, they they're not, you know, just telling me that I can cry on their shoulder or something like the happy to cry on mine, too. It's mutual, it's reciprocal. And I, I feel like they're really human. And they're really real about who they are. I think that's something that I wish I had a lot more when I was younger was everyone just kind of felt impenetrable. Everyone felt like they were doing everything brilliantly. And no one was kind of demonstrating vulnerability. And what I found that it was really foreign to me, but it gave me the permission to just be real about what I was feeling at that moment. Like, I definitely have my stronger moments. But there's such strength in vulnerability as well. Like that, that piece of what's a very big deal for me. And then on the other side, just lots of creative stuff. Yeah, creative things have just been such a fantastic outlet for me in terms of finding expression or ways to deal with things that are not necessarily like with words. I'm autistic. So like words don't come to me super naturally all the time. But sometimes I'd much prefer like to sing it, or I'll play some music, or I'll draw, the main thing is like, that I don't have to fit into like one particular mold or traditional way of expressing myself. It's kind of whatever I want to do. Well, you're extremely creative, and anyone can look at your website, really calm. And let's say that you mentioned you're autistic. So you're new or diverse. I've had another lady on Rachel, Rachel was neurodiverse, as well. We talked about some major and talk about how autism or how that relates to, to live experience and mental Sure. So this is only a more recent Oh, I'm sorry about my. So this is only a more recent diagnosis, maybe when about like four or five years ago. And it's so odd. I definitely shouldn't have a kind of like, favorite diagnosis. But definitely the ones around neurodiversity are the ones that are most, they have the most strengths, I think in the most like different ways to see things. Like finding other neurodiverse people is just, it's so healing and the conversations that you can have with them. The way that people's minds work is just it's so beautiful. I I've loved learning about my neurodiversity and seeing that like the way that my brain works, it's not necessarily a bad thing. I think that that's what I've been told, like, since I've been really young, it's like, you know, I wasn't the stereotypical because I also ADHD, you know, I think if you think about stereotypical eight HD picture like a young boy in class, like not beat like being quite unruly, but I was super obedient. And a lot of that was masked by the autism and the anxiety. And I think like, a lot of the punishments that I was given in terms of like, oh, you know, You're being weird for thinking that way, or like slurs and stuff like that. And now strengths for me, like being able to, so I have synesthesia, which means that like, officer, which means that like, I, if I hear music, then I can see some colors sometimes. And I think like, seeing that as like, for the beauty that it is, rather than something that makes me weird or worse is, it's, it's so empowering. I love being able to, like, connect with different different minded people and be able to, like, bring things together and like problem solve in ways that are unique to each of us. I think that's, that's the best thing for me is like, I love meeting such different people. And the differences that I have are not bad anymore. I think I just spent so much of my life thinking that everything that made me different was worse, but it's not it's a it's a strength is opportunity. Well, I think what you've Yeah, that's a Cato is what you've done is you created a massive amount of strength, obviously, you got very successful in a lot of different fields. And that's where your creative strips come out. And I'll say to people, again, check out your website, you can see everything, it's a great website, and it's you know, all the different things you do. It's very, very impressive as well. But it's gonna say in regards to your role as a as a lived experience, co designer, you do design, what does that entail? Or what do you do in regards to so when I graduated from school, and went to uni, I was still sort of kind of playing, I guess the role that my parents wanted me to play. So I became a software engineer, and was just very skilled in like project management, stuff like that. But all the time I was volunteering mental health in the back end. And it's, I kind of did the flip a bit more recently where I'm doing mental health on the front end. And part of that is like doing not just por que one to one type therapies and group therapies, but also building programs and platforms in a sustainable way that really embeds lived and living experience and surface design. Because I think a lot of the reason why I've had like less than ideal experiences, a lot of reason why my peers have as well is because our voices are not represented in decision making that actually affects us. And I think that's because there's a lack of kind of opportunities for us to create that space and for us to really give meaningful input. So one of my jobs at the moment is with the Royal Children's Hospital. So I'm working to embed lived and living experience and their different services. And that sort of looks like establishing a network of people that have different experiences and mental health challenges and recovery, whether that be young people or carers, and they come and they share their experiences and say, Hey, this is what it was like, for me, here's how we can do a bit better. And I think that it's only through that consistent co design and involving voices that actually experienced AI services that we can make them improve. Okay, cool. So with with that, so you get the you get the people telling off their experiences. So with the coders on what is what changes have already been done on what's the changes you're seeing in regards to these services that have been provided based on that information. So for me, like there's kind of like two sort of segments of of change. First is for the people that have lived in an experience that are involved in that. I think, like, there's so much healing and hope that comes from it. And it's really empowering to kind of say, I've been through these really difficult experiences, but I have the power the agency the opportunity to create change, and make sure that this doesn't happen for other people. And whenever you talk to people like that, like myself included, a lot of us are doing it for like the people that we care for, or for like younger versions of ourselves. And it's just, it's so healing to be able to be provided that opportunity and to be able to connect with other people as well. And then the other sort of heart of it is for like the clinicians and the staff in the organization. And there are lots of like tangible things that make it really easy to argue for, like the use of lived experience in terms of like this reduced need for those services, those reduced like rehospitalization. This reduced, like need for restrictive practices, because people are actually involved in the service design. But there's also like, like the optimization of their resources. A lot of healthcare professionals are really passionate about helping people and have the means to do so. But then it's often funneled in a slightly off kilter way. Like it's not quite on the mark because they don't have that input. And I think like being able to actually target that meaningfully is really, really powerful because everyone just kind of wants to help us in the end. And then finally, like something that I just love so much is the culture change around like, reduction of stigma around lived experience, because it's not Just it's not just like a dichotomy between the clinicians and the people seeking help. It's also like the clinicians accepting lived experience within themselves and within their own wealth, work culture, because a lot of health clinicians have lived experience, but it's often like, it's not been accepted historically, to speak about your own experience, you kind of have to be the perfect healer, you have to be well enough to help someone else. But I think being really real about that and say, like, okay, I can actually use my experience to inform how I treat other people. I'm trauma informed, just by my own experience is actually quite valid, I think like that culture around. Yeah, clinicians speaking up about the experiences they've been through and how hard it is for them is what can really change to the service as well and the sector widely. So I really love the culture change that's happening, because, you know, it's kind of it's shifting power intensive, who is the expert in the room? Because traditionally, there's experts by profession, like clinicians, academics and researchers. And then there's experts by experience, the lived in living experiences come into it, and we're creating partnerships between the two. And it's just the most wholesome Conversations. I'm, I'm so privileged to be a part of it. And I think that's a lot of the reform that's happening at the moment. Just with the reform that's happening at the moment, what do you see in the space of, because I focus a lot of people who had apparently the minister has been honest. So what sort of the reform that you see happening, or what is the stuff that is going to be happening in regards to it so young carers or children over a family with a serious mental illness, I think particularly for like that younger age bracket, and for like young carers, so I identify as a young carer as well. But I wasn't familiar with that language until more recently, I think like that there's so much stuff that's been completely missed in the past. Like, often, if say, like, your parent has a mental mental illness or your sibling does, they're often the main focus of everything that's happening, and you get kind of lost along the way or dragged along. And then it's only when you're older, or you have actually more time and space that you're able to reflect. And there's a lot of grief in that and kind of recognizing what you could have done better what could have been done better for you. I think what's really amazing now is that we're able to tackle it as it's happening. So we don't have to design in hindsight, we're proactively designing and we're changing the system from being a crisis focus, and crisis driven sector, to something that's more continuously getting better at actually helping people that are experiencing the issues right now. We're not basing our knowledge on like literature that was conducted in a study like 20 years ago, it's people on the ground, living their experiences right now and creating programs themselves that help people just like them. There's this fantastic initiative that I am very privileged to be a part of where we partner with a group of young carers and like help them express their journeys and this really creative piece with an artist. And so the artists listen to their stories, and over a series of workshops produce these artworks where it shows what it's like to be a young carer and their experiences, and then a little bit sort of like tied to individual parts of their stories. And it's through like those sorts of creative expressions that really raise awareness of what people like and those sorts of scenarios because not many people know what a young carers unless you're really in this space, like you and I are, I think like through that sort of creative expression or awareness raising, it's that CO design that can spread more and more awareness and bring us all into this conversation. Because as far as I concerned, if we define lived experiences, either personal experiences mental health challenges, recovery, or supporting someone with their experiences, I don't know anyone that isn't a facet of lives and living experience. I think we're all affected by mental health. And we all decide to be involved in the conversation about how do we improve it? Absolutely. And what's so what's your experience as a young kid? Did you ever view yourself as a young kid? Or was it something where like, I never called myself a young kid, I didn't really, I still don't really use that term for myself. But what was your experience with it? And how did you come to the call yourself? A young kid? Yeah. So I was caring for someone in my family. And I think like, the thing is, particularly within the culture that I was raised in, like, being the oldest sibling was something that was just expected of me to do like I was the older sibling but I was also like the older femme presenting siblings, I, I was identified as female at the time. So older sister, I think like that was meant to be something that was expected of me, I guess, I didn't think that I was a carer. I didn't think that I was doing something that was outside of my role, or, yeah, I thought other kids had to do the same things as me. It was only until I really got involved in this space. And I learned about that term that I looked into a little bit more and said, Oh, wow, that that sort of happened to me too. And it's, it's pretty wild. I think like that's it's a passion area of mine because I think there's a lot of kind of gaps in our knowledge like when you think about people that care for people with mental health difficulties you often think of either clinicians are biological parents, but you miss like so many other people in that equation you miss the supporters and the carers are not traditional, I guess. And there's, it's systemic, I guess, in terms of how you can heal a mental health journey you have to create, you have to bring everyone along with you. And you have to involve everyone with that. So interrogating like, who are the people around you, who's looking around you is something that I wish happened to me. But it's nice now that at least within the Royal Children's Hospital, we're involving a lot of young carers and the design, and its young carers, not just siblings, but people that also care for, like the other family members or friends as well. And which are kind of changing the definition about what it means to be someone that looks after someone else without having to just be a parent. I think it really the important thing for people to realize is that the the child is in that situation is the person who's affected generally, by the most because it's your parent, and they're responsible for raising you. So you're affected by their mental health, or their mental illness or their manic depressive, whatever, the most plus regards to suicide prevention, you're really the first person or if there's multiple children, or whatever, you're the first, you know, more than that person, then you will then the psychiatrists will, psychologists, Will, external parties, whatever, so you're really affected the most, yes, I get the sense that I don't think we will ever Are you ever included really by anyone who's trading, let's say, with your parents, or your or your loved ones in the whole thing. So maybe don't talk about your perspective for people rather hearing from me from you about how you're the first person there, you're the one who's most affected by the larger gamut of mental health in the home. 100%. Like, I think the kind of term first responders is something that applies to young carers, like children, siblings, but also teachers and stuff like that, and coworkers as well. It's people who like, you can get triggered, or you can have a moment, anytime, anywhere. And it definitely, at least for me, it tends to happen outside of the one hour appointments rather than within them. And I think, if I didn't know, I hope that the services that we're currently implementing the projects that we're working on that through codesign, I hope that in the future, when they're implemented, we actually can, like, include other people in that care. And so when you're asked like, what can help you and the time now, you know, like, we also build it recommends health literacy for the people around them in their daily lives to say, like, suicide prevention, training is not just important for clinicians, but it's also important for a best friend, or a parent or a cousin or a teacher or colleague, it's really important that a lot of us have that mental health awareness and have these conversations, so we know each other best, and what can we do to help you in the times that you need it the most. And I think, for me, I really wish that I was a part of those conversations a lot more, because you just feel really powerless, if you don't understand if you just been left out of conversations, and you don't have the language or the knowledge or the resources to take care of someone that you care about, and then afterwards take care of yourself, too. Like there's just so much vicarious trauma that happens for carers, and I think, like, within the network that I coordinate, there's a lot of historically unlived living experience. It's kind of like a difference between or a separation between like personal experience versus care experience. But for me, like there's a huge overlap. Like in the network that I have, which has like near 1000 People now it's about 80% of overlap between both parties. And I think that's because carers often have their own experiences, whether that be before or after their caring experience, but it's it, they're not separate. And I think it's important to really, really emphasize that is that the carers need support to for their own well being and they're not just a supporting role and someone else's story. Yeah, I couldn't agree more. Do I talk about the network? You is that your network, you've established the 1000 person that we're gonna talk a little bit about that? Yeah, what I'm sorry, are a lot of it to my boss, who is this absolutely brilliant woman. She first establish a campus mental health strategy at the hospital. And it's something that is making sure that mental health is everyone's business, and not just people who present at the hospital just for mental health difficulties, but everyone kind of gets assessed for it. So if you come there with a broken leg, or you come there, in terms of like Kasetsart treatment, you're making sure that everyone's kind of assess of, hey, how you going today, mental health is still a priority for you. And I think that historically has not been done. A really big part of that is the involvement of people with lived and living experience. And that's where I came on board and just helped establish this. In terms of like getting people in, we have to establish a pathway for them to actually engage with us or for us to engage meaningfully with community. And it's part of like that network that we're building at the moment. If we have opportunities within In the campus or within the hospital, we send them out to the network and say like, Hey, we're looking for advisors within this project, like, please apply if you're interested. And then people can apply. And then we get that sort of engagement that way. And it's something that I'm constantly wanting to work on, because the network is so ever growing. But there are limited opportunities at the moment. But those are going to, I think the resistance that the hospital and most like clinical places have had to lift in living experience engagement is that they're just not used to it. It's something that's really new. And it's a really, really big shift in power. And I think, through that culture change that I was talking about earlier, like, it's so small, but in the meetings where they have lived and lived experience fires, as you can see clinicians like really wanting to connect with them, and really want to connect with themselves as well and celebrating lived and living experience in such small ways. And I think it's going to actually change the entire way that we look at, like what expertise looks like at the hospital. And I think there's just gonna be more and more opportunities as we go on. I'm really hoping for it to not be like, such a separate network, which is at the moment, like just going through my team, but I hope it to be something that's just really integrated as a hospital where it's just part of everyday type work, not the people that you know, kind of stop and say, oh, you know, we should have someone with lived experience here. It's just something that's expected. You know, everyone, every meeting, every team will have something that's informed by lived in living experience. And it's just going to Yeah, be completely normal. That's great to hear. No one will ask you about the, the system itself now. So in regards to mental health awareness moving, which is happening, everyone knows mental health is an issue, right? So we know it's an issue, where there's awareness, there's charities left right center, promoting it, right? What's to you needs to happen next beyond this, let's say surface level awareness, where we all know it's an issue, what do you seem that needs to happen next? I think like, there's such an amazing initiatives such as, you know, like, Ioh K day and a lot of awareness raising days. And like you said, you know, were aware that mental health one exists, and two is quite prevalent. But I think there's still a sort of lack of real representation of our stories and reels spaces where we can learn how to express our stories. Like I only really learn this sort of literacy and how to speak about my experiences through speaking workshops, like very dedicated, specific training. And I think if that was more available to the public, then we could just talk generally about how we're experiencing life in a really safe way. I think that's what's important is like, one were allowed to speak about what we're going through, but to how do we do it in a way that's safe for us. And so for the people that are listening to it, I think that's the main kind of barrier right now is that we know that like, most of the people that we know, are probably experiencing mental health difficulties. But how do we actually communicate about that, that we don't have the support to go further than the just are you okay? Or that? Are you really, okay, it's how do we actually navigate that system together? How do we seek support together? How do we have each other's backs through a day to day basis. And it's, I think it's the step after awareness that is really difficult is the action taking, and it's the interrogation with curiosity and compassion that not many people have the skill of resources to do. So I hope that through kind of people that go through these types of trainings and get more familiar with the language, such as lived in living experience, that we can just start these little ripple effects and go out and communities and start raising more awareness that way, but through like upskilling people and empowering them that their voice is important. It's not just awareness, like they're part of this and this movement, something that can be really healing for them too. Awesome. But what about from the actual, let's say, the hospital services, right? So my job until, you know, my mom passed away at the start of the year, but up until then, I've been involved in deal with hospitals, psych wards, all that sort of stuff, right? So for me, there's a real lack of the funding that will is getting getting allocated that doesn't actually go into physical you need physical places you need more mental health nurses need a payment, these sorts of things. So from your perspective, going beyond the top level stuff from the from the actual services side that the real the real life services, what do you see these that happened from, from your experience? So Well, firstly, I'm sorry to hear about your mom. And thank you for sharing that with me. But I think like one of the biggest things that I'm seeing slowly, at least at the mental health service level, is this thing called transformation. And at least a Victoria. Part of the Royal Commission into mental health was rolling out transformation are among the main mental health service areas, and a really big chunk of that is implementing lived and living experience workforces. And so that's peer work is one of the main branches of that. And I think through that peer to peer work is something that I'm extremely biased on and that I just love to pieces that I think like at the moment within our hospital we can see family peer work is being rolled out so they are people All who have experienced being family members are carers or supporters of their young people, and they help other people who are currently going through that service with their experiences. And that that sort of embedding of a whole new workforce into those services is something that has just had the most amazing effect. And it's only in one ward at the moment. But I'm saying that like that being a sort of demonstration of how important this is, and it's not just important for the peer workers, or the people who are using the service, but also for the other clinicians in terms of their understanding of mental health and well being. And that being implemented and sort of, what do you have one model, and you demonstrate that it works? Well, at one service, you can really easily implement that elsewhere. And I think that that's something that I'm seeing is just such great potential, I'm really keen for that to be normalized. And so for everyday services to involve peer work, and that to be like a much more broad a sector wide change at the moment, like I'm saying that implemented it to the hospitals that I work at, but it's something that's entirely statewide in Victoria at least. And I think that the other hospitals and other states will catch on as well. Yeah, and there's also community based services like they're like in my mom used to have a service called wellway. Always was basically people who've had mental health challenges themselves that might have Bipolar, or schizophrenia, or whatever. And they would have a role might be a part time job, for example, but they would go and take out people, or go meet with people who were on the NDIS, for example, who had by phenomena bipolar, but they had bipolar or schizophrenia, or take him out for a day or just go have a coffee with them, that sort of stuff, right. And that works both ways. It gives that person a job and some purpose. And it's also good for the person as well, that they're not getting a random psychologist or caseworker come to their house, they're getting someone who's more of a friend slightly, and can just be there. And they can have that instant level of respect, because they both know, what's going on in regards to their mental health challenges. Yeah, I think the non clinical support is so huge, and having to like be able to connect to someone that's your equal is really rare within help seeking, it's, it completely changed the game for me, and it has changed it for a lot of my peers as well. I think like that sort of community type partnerships is something that I hope to see a lot more because, yeah, I don't think that we can, like, just clone mental health professionals or make more services necessarily, I think it also involves a lot of services, kind of having humility and saying, you know, this is where expertise sort of stops, like we provide the clinical services we can provide, like inpatient units and stuff like that. But when if you want to go and heal through, say, religious healing, or say through culturally specific healing or other things like that, we can refer you and create partnerships meaningfully so that we don't just handle you to another service, but we create that relationship and really walk you through that whole pathway. And that's, that's something that I'm seeing a lot more of, and I hope that we have like a much more integrated system, because at the moment health, you know, mental health is so separate to a lot of other things, whether it be physical health, whether it be homelessness, or employment, or alcohol and other drugs, but really it we're all all those types of things affect our well being. And I think like those meaningful partnerships within clinical or non clinical services, can really make just help seeking a lot easier as someone that seeks help, like, be able to just present somewhere and say, Hey, here's what I'm experiencing, and not having to be handled and just being led in one direction would be a brilliant change. Yeah, agree with you. I mean, you sent us a couple really good points that we want to hammer on or ask you more about, love that word you said about humility with the services because I don't think my experience, I was treated with a lot of disregard by psychiatrists and psychologists treat my mom. And I love that how you said that humility. So you think, the professional stand to be a bit more humble in regards to hey, we don't know everything about this person, we can, obviously if they come with us bipolar or schizophrenia, we know there might be certain things about the actual person who lives in them is will be more an expert on the subject than us really. So do you see that sort of attitude coming around now? Or? Absolutely, I definitely see it from like, it's, it's really wild. Like I, you know, I'm still young person. And I can't really imagine what it would be like to be some of the clinicians that I work with, you know, there's psychiatrists who have a million different personnel models and letters after their name. They've worked for X number of years in different universities all across the world, different hospitals, they have such specific and brilliant expertise. But if I were in that position, and that I was told that I had more gaps in my knowledge, and someone would come into the room that was like, younger and didn't have like any letters off the name, it would be kind of uncomfortable, like not necessarily bad, but just different. So that's the extent that I can sympathize with that. So I think like to have someone in that position that I see on a daily basis, constantly ask for more and say, like, Hey, I actually don't know what it's like to like live with someone. What is it like for you, like that sort of acknowledgment of that are in limit of their experience and willingness to learn more is massive. I think like, I just see that on a daily basis from some clinicians who were initially very, very Are you reluctant to engage with people like me, people with lived and living experience because, you know, where where the help seekers, like we're not the experts in the room usually. But I think like them willing to learn and then willing to shift that power over to us. And hand decision making to us sometimes is, unbelievably, it gives me so much hope. Like I say in some of the most, quote unquote, this is their words that mind the clinicians words, they call themselves across the aisle clinician, and now they're just really enjoying engaging with us. Because the depth of our experience, it's not something that can just be read in a book. It's something that has to be lived through. And it's only through our own expressions that people can learn from that. And I think there's just such diversity and all the different things that people like us have lived through. And it's, yeah, through conversations and relationships that we can learn from each other and partner together to build the future. Well, I definitely think Emily that you raised, there's always been a barrier for whatever reason they might Summon, the psychologist might think I'm completely out of school here. But I've got the sense, from my perspective, that there's always been a barrier between treating psychiatrist or psychologist, patient and then family or extended people who know the person really, really well, right. There's always been, that barrier has never been right, we're going to treat you all. It's always been that our patient we don't really care about. Yeah, that's that's from my perspective, right. So I've you're saying, from your experience, now that you've started to see a change regarding psychiatrists or psychologists in regards to involving those people more willing you from your perspective? Absolutely. Like I, you know, I think many of us have, when we go through difficult experiences, and then learn that it could have been better. The initial reaction might be sadness, or guilt. But I think there's also a level of anger sometimes. And I think when you get involved in advocacy, you can get pretty angry and just be like, the hero, the injustice is like, Why? Why are these being addressed? And I was definitely like that for a really long time. And I kind of joined, like this small segment of the delivery experience community where like, it's easy to blame a psychologist or psychiatrist and say, like, why didn't you do this better, but I think acknowledging that they're human, or acknowledging that we're all on this learning journey, that we all have gaps in our knowledge, and that it's just, it's human to kind of not like to admit when we're wrong. That was something that I've really had to go through in terms of my advocacy and personal and professional journey. And now seeing that there are so many clinicians that are so willing and ready and, like, it's not just willing and ready, but they're excited and passionate about changing the way that we do things. It's it's so motivating. I really wish that like, this is something that I I wish this is something that I knew earlier on, because I think it's like the disenfranchised people who feel really disempowered, who like can't see an opportunity or resources or chance to get better or to make a change. But now I'm among people that like, they are the traditional power holders, and they're stepping back and letting new people in the people live the living experience, people who are really young. And yeah, have just been like seriously disempowered, like people that were like me, and I'm seeing it happen right now. I think that that's something that is just so motivating for me in the work that I do. And I know that the system will get better the more people there are like that. Yeah, that I'm not saying that every, every clinician psychiatrist is like that. But I think that everyone has the opportunity and the chance to be like that. And I've definitely seen a lot of people demonstrate that it's and that they're just fantastic to work with. That's great to hear. You mentioned some of the four as well, I want to go back to integration, integration of services. And a lot of people might not know what that means or how that affects you. You said some really good stuff regarding the wellness, the totality, wellness, like you know, nutrition and stuff like that. So I want to talk about from your perspective, what's How would integrated services work? Let's say for example, someone's got a serious mental health challenge. And it's obviously there's a psychiatrist involved or a psychologist in regards to how would other services or how would you see that relating or working together? Yeah, um, so for me, what the ideal so this is, like, you know, infinite money and resources. If someone were to seek help, they were present somewhere or look online, and they were kind of just be asked this question of like, what would you like help with? Or at least like, what do you not want help with? I think, like, we know what we don't want help with a lot of the times more than we do with what we want, but there's, and then a service be able to identify like, here's what we can help with, here are your options and kind of presenting it in like a menu type setting, and then be able to say, here are some other services that can help you and how can we help you get there? That is something that I wish I had from the very beginning. It's only something that I know now like being very embedded into the system. But I think being really clear about what's available, is really important because as helps because we often feel like it's scary seeking help, you don't know whether you're going to get the right help, you don't know whether there is help available. And often if you do go down a certain pathway, it's the only pathway that you know. And I think just knowing that there are other options available and knowing like, here's how we can refer you to someone better, is really important. What came to mind when you asked me that question visually, is this Aboriginal and Torres Strait Islander Social emotional wellbeing wheel, and it has like different segments there. And I definitely don't identify with all of it, because I'm not First Nations. But there's parts of the wheel that like go into connection to like can in connection to country, and connection to like, different parts of yourself, as well as things like food and employment and study. And I think like checking out each of those different kinds of sectors of wellbeing, or how they might intersect is really important, rather than just kind of asking someone that overall question of like, how are you feeling? Or what do you want help with or going through a specific diagnosis type route, we need to be more like holistic without understanding of mental health and well being. And I think providing those specific questions about how you're going in this area of your life is as important to you because you know, not all of us were employment or anything else is the same weight. That is a way that I think we can actually really identify what matters to each individual person and get them the help that they need, not the help that we think that they need. Yeah, that's a really, really great answer, Emily, and just want to comment on that point for people because let's say for example, if you had mental health challenges, most traditional readings, you either call a number or you go to the GP write for referral. And all too often I hear from friends that they're just really, really tired, give them antidepressants, or that's it, there's no really attempt, as you said, to find out more, what's going on, is there a relationship breakdown? Or you're doing a work that you find purpose football? Or is there something unresolved from your childhood, for whatever reasons come up again, like all these sorts of things, right? So we seem to just go to that antidepressant. So here's a medication, where you go, yeah, it's so restrictive the current model, I guess, like there are definitely some. So there was strength that I see within diagnoses. Because I went and got some psychological training, I did my post grad. And I think their strength in terms of if you die, if you diagnose someone, there are different pathways of treatment that are like proven to work for people who have those types of symptoms. That is one thing, but like, it might not be the totality. It won't fix everything. It's like one way of managing it. But there are other things that you can delegate to. But I think what has happened, in my experience is that a lot of clinicians haven't seen me within that sort of hacking diagnosis help one part of this person's life. It's mostly like, how can diagnosis like, they just put me into that sort of box, and then I'm just shipped off in that box, and there's nothing questioned outside of it. So I think, like, yeah, the was definitely a point in my advocacy journey, where I was part of like a group that said, you know, we should throw out a diagnostic manuals and stuff like that. But I think that there's definitely strengths within that. But it's not at all the totality of our healing. There are lots of things outside of my healing that have helped, that are not medical, that are not clinical at all, I think we need to be a lot more cognizant of that and know that mental health is not one size fits all. We can not just be medicated, and everything's fixed, that might work for some people, but definitely does not work for all of us. And I think being really cognizant that mental health is so individual, and we need to kind of see all the different options available and be able to choose those options and have autonomy within that is what's really, really important. And what's your hope, like? What do you what do you advise for young people or for people now who might be listening to this and haven't got any help? Or they've got unresolved issues? What's the what should they actually do? What's if this was the some advice from you into what people should do if they want to start actually getting some help today? Honestly, like, if you're listening to this, and you're struggling with whatever it might be, I firstly want to say, like, Thank you for admitting it to yourself. Because I think that that's a really hard step is being real with yourself about what you're going through. I think the next thing is for me to tell you that you're not over exaggerating, and you're not too sensitive, you're not too much, and you're just enough the way that you are. But the king key thing is, is that you're not alone and what you're going through, if you do want to help, there is help available and there are people that can walk you through that too. You don't have to seek help alone, because it's it is terrifying. It is a scary thing to go through. But being with other people makes it a lot less scary. And whether it be someone that you know, or someone like me if you want to shoot me a message like that's totally fine. There are always people out there that are ready and available to help you and understand. Like I might not have the exact same experiences as here. But someone will understand a part of your experiences and you need to know that like, you're not crazy, no matter what you or anyone else tells you that you are like it's I think that's something I wish that I could say to my younger self, because I just, I spent so much time thinking that I was everything that was wrong and that I didn't deserve help. Like, I kind of knew that there was help available, but I was too scared to seek it. Or I just thought that I wasn't good enough for it. And I think the key thing that changed for me is meeting someone that was really honest about who they were and said, like, you know, they're struggling to like, maybe we can go through it together. And it's that sort of community that changed everything for me. So if you're struggling, like, please know that there are people out like out there that can help you help is always available, and you're never alone. That's some great advice. That's what I've just done with this. One question is, well, how did you? Have you gone? Like you've achieved a lot? How you managed to have time to do what you've done? Was it something where you talked, you spoke about earlier was about creativity, right? So you knew that you've heard this creative side, and it was something where you just dive into your creativity, and that's what's absorbed you? And that's what's allowed you to sort of, let's say progress, or? Or is that sort of how you've managed to really do all the things you've done? Because I don't think any, like I said, I've done and as I said at the start advisable to go to your website and have a look, but it's quite amazing. So was that something where you've achieved that because of that element of you, and you've just gone dive, dive straight into the creativity and just let loose and you've gone on to achieve all these things? Honestly, I feel like creativity is just something that like I kind of had to do. It's kind of like breathing, I guess, like, if I copy? Let's be creative, then. Yeah, I don't know. I feel really suffocated. I don't I don't think I know how to express myself. I think a lot of the things that I've like, I feel like high achieving is something that I still sort of struggle with, because I have impostor syndrome in that regard. But I think the the things that I've managed to achieve, because I've been really supported to get to those different points. And I think identifying what I'm passionate about, I'm really bad to dedicate a lot of energy into that is, yeah, it's been really fulfilling. I think the main motivator for me most recently is knowing that I can help other people and making tangible change out of that. Like I definitely, you know, studying and stuff like that. I was, you know, quote unquote, high achieving in school, but I definitely, I guess didn't kick as many goals as I feel like I am right now. I think the reason is, is that now I actually am doing it for a purpose. And I'm doing it for younger me. And for people that are currently that I'm helping right now. Like I think that's the transact tangible change that I'm making. And it's what I feel like it gives me a sense of purpose and makes me want to keep doing more. There's so much healing that I definitely don't claim that I'm not I'm not selfless completely. I'm not like, completely altruistic. Like, I've gotten so much healing and journey from this as well. Like the conversations I have, every day where I'm, you know, in that quote, unquote, help opposition, I'm getting that help from the other person as well. It's mutual. And I think that's what's really beautiful is about like, conversations like you and I are having today, like I've learned from you, I've appreciated the space that you've held for me. And I think this sort of communal healing is something that I don't know, I just, I never want to stop doing. There's no difference really, for me between work and personal life, I can't believe that I'm doing the work that I am now it can really be cold work. It just, it feels natural, it feels like it's something that yeah, I didn't know existed, lived in living experiences. Something I didn't know existed until, like, more recently. And it's I can't imagine myself doing anything else. That's great to hear. I'm very happy for you. I was gonna say the so where can people find out more about yourself? Obviously, plug your website already 20 times, obviously, maybe talk about where they can find is there anything else you're working on? Or what can they do? To find out more about? Yeah, sure. Um, honestly, yeah, you can hit me up my website, you can find me on LinkedIn. I'm currently working on. So a series of a couple of books, actually, at the moment. One of them is about multicultural mental health. I'm looking for people who have multicultural experiences and mental health journeys and who want to speak a bit more about that, because I feel like a lot of the kind of discourse around multicultural mental health is about, like people speaking about us, but not us speaking for ourselves. So I'm just putting together a collection of stories. So if you want to be involved in that, let me know. But otherwise, I'm also making a origami book about endangered Australian animals, which is kind of odd. But yeah, if you if you want to get a copy of that, let me know as well. But honestly, I just, I can't promise what I'll be doing in a year's time. It's pretty eclectic. But if you ever only get in touch, I'm always open to conversations. And yeah, I love chatting about these types of things. I'm very appreciative of your time today, Joel? No, I'm very appreciative yours and it's very, very been a great discussion to have someone who is passionate about yourself and has achieved so much it's really good. I'm looking forward to following your journey and seeing what you achieve in the future. So thank you very much for joining me today.
Thank you for listening to the entire interview if you made it to the end and a big thank you to Emily unity for their time, please check out Emily unity.com as well, to read up about everything Emily's achieved it's as I said, it's very amazing and very impressive person, I was very lucky to have their time to talk about their lived experience and everything from their perspective as well. Now, if you do like the show, please consider leaving a review online. Now if the audio is sounding better to you as well, today, I have actually figured out how to record with Adobe Audition better, especially during the post editing. So I've finally figured that out. So hopefully did sound better for you. I'm also on the lookout for someone to help me write a memoir. I'm trying to write my story down at the moment. And I just think trying to write it down has been very hard, but I just want to I just think I need to have some sort of PDF or some sort of book that I can share my story that will hopefully help others but also helped me try and spread the message a bit more and do some talking. He helps with the show role and stuff like that. So if you do have any experience writing memoirs, or no writer, please put them in touch with me as well at Joel kleber.com Until next week, guys, thank you for listening to the episode and I hope you enjoyed it.
Lived Experience Advocate and Mental Health Innovator
Emily has over 14 years as a lived and living experience professional. They have a diverse portfolio, particularly focusing on diverse identities, including LGBTQIA+, multicultural, neurodiversity, and disability.
Their work has included media, policy, service design, training, research, workforce development, and government relations. They ground their work in peer values and their postgraduate in psychology.
These are just a few episodes that focus on young carers and people growing up with a parent who had a mental illness.