Elevating complex needs lived experience with Maggie Toko OAM

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Get Real is recorded on the unceded lands of the Boonerong and Warunjury peoples of the Kulan Nation.
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We acknowledge and pay our respects to their elders, past, and present.
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We also acknowledge that the first peoples of Australia are the first storytellers, the first artists, and the first creators of culture, and we celebrate their enduring connections to country, knowledge, and stories.
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Welcome to GetReal, Talking Mental Health and Disability.
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Brought to you by the team at Erma 365.
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Join our hosts Emily Webb and Karenza Louis Smith as we have frank and fearless conversations with special guests about all things mental health and complexity.
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We recognize people with lived experience of mental ill health and disability, as well as their families and carers.
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We recognize their strength, courage, and unique perspective as a vital contribution to this podcast so we can learn, grow, and achieve better outcomes together.
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Maggie Toko has spent decades raising the voices of those who live with mental health issues and emotional distress, using her own living experience and professional work in homelessness, sexual assault and youth services.
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At the time of recording this chat with Maggie at the Complex Needs Conference, she was the consumer commissioner for the Victorian Government's Mental Health and Wellbeing Commission.
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Now she's the Chair Commissioner.
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New Zealand-born Maggie was appointed a member of the Order of Australia earlier this year for her significant services to mental health governance and awareness.
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Now let's hear from Maggie.
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Maggie, we're recording live from the Complex Needs Conference, day two.
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It's been great so far.
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How have you been finding it?
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Like you were here yesterday?
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Yeah, I was here yesterday.
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The workshops that I went to, like the first keynote speaker, really started the day off well.
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I thought she was fantastic.
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Really interesting that she had data from Canada, uh, Australia, and New Zealand, as well as Europe, about women being incarcerated at such high levels.
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And it really, you know, I've worked in a lot of spaces, homelessness, youth work, sexual assault.
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So I've known a lot of consumers who have ended up in the justice system or who are on the fringe of the justice system and not getting support.
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We had a really interesting conversation yesterday about sometimes we seem to have a justice response to complex needs.
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And is that is that the right kind of response?
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So we had a really big conversation about why sometimes they'll be so quick to go to that justice response and people find themselves incarcerated, you know, I'd like to use the word warehoused, in jails when when actually programs in the community are probably going to be a whole lot better.
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You know, the general public and politicians often go to law and order as a standing kind of platform.
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And it doesn't allow, I don't think, it allows for human beings to treat other human beings that they have rights and they deserve to be respected.
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It makes a whole community of people in the justice system separate to who we are.
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And how is that fair?
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It's just not right.
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So, Maggie, you are one of the uh people on the uh expert panel discussion this morning about First Nations leadership talking about complex needs.
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So I'm interested in what are the key things that you're gonna, you know, really want the audience to hear today.
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Well, I think one of my key platforms is about elevating the voice of lived experience.
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So actually, one of my messages will be about listening to the person because all they want is to be heard and respected, and that is such a hard thing for people to do, and I don't understand why it is like that, but I've been a youth worker in a past life, and I've seen young people, I've seen children just disrespected and not heard and not entitled to their rights, and it just goes on as they become adults, and I thought it was really interesting what the keynotes weaker said yesterday about we had children taken away from parents when they're younger, and now they're adults, and they've been taken away again.
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What does that say?
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So that's one of the messages that I'll be giving.
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The other thing is that there's just there's not enough kindness in the world, and it is a really easy thing to do is to be kind to another human being, but there's just not enough of it around, and people jump, jump to solutions for consumers who have complex needs.
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You know, one of the things that I've learned over the years is to sit in silence with somebody, actually sit with them and wait until they're ready to talk, and not enough people do that.
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That quit.
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I can get you here, I can get you this support, I can get you that support.
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So when they come across somebody who's really complex, who's like a two million dollar person or something like that, they bring everybody in their dog along to work with them without actually asking them what they want.
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I think that's very powerful, isn't it?
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Uh I think when you give people it's about power, isn't it?
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It's about giving people power.
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And I remember a long time ago somebody saying to me, and it was a person with lived experience, I'm not going to be a passive recipient of care.
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And I think that's what some what you're describing as that passive recipientness, if that's a word, you know, and being told what to do.
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And look, I'm English, right?
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So I was brought up like you the doctor tells you to do this, you do this, the teacher tells you to do this, you do it, you don't question, you you know, and it took me a long time to actually understand I've got my own kind of agency here, I can make decisions and and choices myself.
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And I thought that was really powerful.
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It was a time when I was working at Shark, and it was very much about, you know, we're not going to be passive recipients of care, we're going to own own this journey.
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Uh it's interesting that you say about passive care.
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I think one of the biggest points about First Nations consumers is that they always having to fight to be heard.
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Fight for their land, fight for their history, fight for their farno, fight for every single thing that they do.
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So they often answer back when somebody's trying to tell them what to do, and that puts them on the outer straight away.
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They're standing up for their rights.
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And sometimes services I won't say sometimes, services don't like that.
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Yeah, or don't understand that either, perhaps do they, you know, and that's is that the cultural safety piece as well, isn't it?
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Is that missing, you know, the understanding of that, you know, you've been other if you've been othered your whole life and told all of these things, like I would I would hate that.
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It's part of the system we're in because of colonialism, we're very paternalistic.
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Yeah, we're a paternalistic society and we other others to be less.
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And I think what this conference has done for me is really reminded me who I'm here for.
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I think I always know who I'm here for.
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Like I I I am 150% committed to elevating the voice of lived experience consumers.
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Totally.
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But in my travels and in my work, I haven't forgotten the complex consumers I used to work with.
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But I met somebody yesterday who and she said, I I'm sure I know you, I'm sure I I've met you before.
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And and she said, I used to work with so-and-so.
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And I said, Oh, I work with so-and-so too.
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And she said, That's where we met.
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We worked with this young bloke who was a complex care client 15 years ago.
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Wow.
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And he stood out to us, you know, both of us.
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So we have this memory, but what coming to this conference has done, it is I remember him and I remember all the young people that I work with, and they still deserve a voice, even though they're adults now.
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Absolutely, and so I'm going to do whatever I can to elevate their voice.
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I'm excited, Maggie.
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That's really good.
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And I think if the conference is doing that for all of us, that's an that's a really awesome thing.
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Maggie, can you tell us and the the listeners who will be listening to this just a little about your own lived and living experience?
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Sure.
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So I have been diagnosed with schizophrenia.
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I don't really like that title.
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I never have.
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But what it means for me is I hear voices 24-7, homicidal voices.
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I have experienced the weirdest thing lately.
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For 25 years, I haven't been able to go to the movies.
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So I go to movies, but I don't stay in the room because I hear voices the minute the lights go down.
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So I've had to get up and walk out and just not go for 25 years.
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Recently, I don't know what has happened, but I've been able to I've been to four movies in a month and sat through the whole thing and not had a voice.
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Wow.
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And I don't know what that's about.
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But I'd be like, this is good.
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Yeah, it's it is really weird.
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But I still can't watch TV.
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I can't read books because I get messages in the books, and my son asked me, he said, what kind of messages?
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And I said, Well, you know how you have the introduction.
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Well, my introduction is really horrific.
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So, and it continues throughout the book, but I can't watch TV, and so I spend a lot of time in silence.
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I'm on the depot injection and have been for 10 years, and what that's done for me is it's caused a tremor in my chin.
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So that's it's called drug-induced Parkinson's.
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Yeah.
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And so I take Parkinson's medication now for that.
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So, because they never tell you when you take medication.
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Like I've been on heaps of medication over the years.
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One gave me a heart murmur, that was clozapine.
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They never tell you the side effects that happen.
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You know, you you put on heaps of weight.
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You for people who are on lithium, they get the shakes.
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Uh it's quite and it can be quite severe.
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So they never tell you the side effects, they just say, take this tablet or take this injection.
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Yeah.
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And I tell you, so I'm on the depot, and what is that, Maggie?
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That's an injection every fortnight.
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Most people who are on the depot mandated to take it, they don't have a choice.
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And so for 10 years I didn't have a choice.
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And you can try to get off it, but it's really hard to get the powers that be to listen to you.
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But it works for me.
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So I voluntarily take it.
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But there's this little part of me that thinks, why should I?
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Why should I?
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You know, like, where's my rights?
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Yeah.
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And being able to say, I'm not gonna take it.
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That's a big question, isn't it?
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Well, I don't have rights in that paint, in that space.
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Well, not if you're made to take it.
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Just they're taken away.
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I want to smash a few myths, Maggie, because whenever people hear the word schizophrenia, you know, like it's a scary word, you know.
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I think people think, oh my god.
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Because when you I don't know, you say you don't watch telly, but on telly, schizophrenia's not often portrayed in positive ways.
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Like, you know, you have who's the bad character, we'll give them schizophrenia, that'll explain all of the bad.
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They hearing voices, you know.
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Yeah, so that's smash a few myths.
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I mean, here you are, consumer commissioner, working for the Victorian government, living as a person who has schizophrenia.
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What would you say to people that are listening to the podcast?
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What I'd say is don't believe everything that you bloody read or that you see.
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Yeah.
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So true.
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It's just not how it is.
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I mean, I wasn't there have been times in the past where I've been really dangerous.
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But I didn't wake up one day and think I'm gonna be this dangerous human being that can't be trusted around people.
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It just happened.
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And from trauma in my childhood, from trauma in my life, don't listen to everything that you read or everything that you see.
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And most of the portrayals of people with schizophrenia on TV and movies and that is just so extreme and just so ridiculous.
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It's just it's just not how it is.
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It's irresponsible.
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Yeah, it's more than irresponsible.
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It it just theatre painting a picture and media painting a picture of othering some parts of the community.
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So we as the public are always suspicious of them.
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Yesterday, at the end of the day, I had the most fantastic conversation with two people, two voice hearers from Voices Vic.
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And wow, they they mentioned you, like it I learned so much because it's so great.
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And I was able to because you know, I'm I'm not a professional in this space, so I asked questions that maybe the general public would ask, and I I honestly didn't know, or I don't know why I didn't think of it, that hearing voices isn't necessarily associated with diagnosed mental illness or a condition, but also the voices they're they're very individual for people.
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That's right.
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There are some voice hearers who hear positive voices and they enjoy the conversation that they have with them.
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But voices, they're they're fantastic.
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And I did training with them like 20 years ago.
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Uh run hearing voices groups with young people where there's a gathering where they came together and they realized they weren't the only person in the room, that there was somebody else who actually got them.
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What a difference that is when you realize I'm not the only person that feels this way.
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Well, I felt that way.
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I mean, I I felt that way when I when I c when I discovered Voices Vic.
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It was like, oh, I'm not the only person, and I'm not the only person being tormented by my voices.
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So it was really an awakening.
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Yeah, I really want to do their training, and I think uh quite a few Irma people have done training because anyone can do it.
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I thought, oh, I'm gonna do it.
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Like it's so that I was just tired yesterday, but after speaking to it was Janet and Harley, and I was just pumped.
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I was like, oh Karenzo, I just had the most amazing conversation.
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Yeah.
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I mean, I think the thing about hearing voices while we're in this conversation, I I never really kind of I don't think you can get it and understand it.
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And I went to see a play, and the play was written by the sister of a woman who had schizophrenia about hearing voices.
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It was so well done.
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I thought I think I kind of got a sense of what it might be because as you as we came in and this this whole play had all the different voices that the person in the play was hearing, and as a member of the audience, you got to sit and experience that moment, that time for an hour in my life, you know, and it was just like I couldn't have imagined what that would have been like.
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So I almost acted on some things, but I didn't, and it's just by pure luck that I never my psychiatrist would often say to me, you'll end up in the forensic system.
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So Yeah, you proved your psychiatrist wrong, Maggie, because you ended up working for government.
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Well, I mean, the thing with my psychiatrist, he used to say to me, I think you need to give up work.
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I think you need to go on the disability support pension and and just not do anything.
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And the more he said that, the more I worked.
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Yeah, because work actually gave me consistency, it gave me my own personality, and so I just worked and worked and worked.
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And one thing that I say, I do quite a lot of talks around town to young people, to drunk alcohol workers, to lots of people, and I say to all those consumers, you too can be commissioner.
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I love that.
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If I can be commissioner, trust me, you too can be commissioner.
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So I'd love to know, Maggie, uh people listening to this podcast, and we're gonna 100% bring you back for a much longer conversation about this, because I know that we've got to get you moving in a minute to get ready for your panel.
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But for people that have someone in their family, I know you're talking, you've got a career consumer as well, you know, or or someone who has a schizophrenia diagnosis.
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All the things that you've just shared and talked about, people saying don't do this, don't do this, give up this, do all of those things.
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What would you say?
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What would you say to them?
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To the to the carers, to the carers, and and also the also people who have just you know got that diagnosis.
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Now this is what's happening for you.
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There is recovery.
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There is recovery.
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It's a long journey, it's not a race, it's not a sprint, but hold on to the hope because there is hope at the end of the day.
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And for those of you who have been diagnosed with any diagnosis, you are your own leader.
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No one can lead you better than yourself.
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You know yourself better.
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So stand up for your rights, stand up, stand up and be proud of who you are.
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There's nothing to be ashamed of.
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And for those who look after people who have got a diagnosis, you can watch them thrive.
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They have the ability to thrive, they have the ability to go on to do bigger and greater things than just sit at home smoking in the room.
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With the right supports around them and Fano, which is family and Māori, Farno play a really important part in providing that avenue of support to go on and do the best that you can do.
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Maggie, there's no doubt that you are an incredible human being, you know, absolutely.
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And I love your fire and passion and energy and the things that you talk about.
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And I know you're going to be absolutely stellar on today's complex needs panel with First Nations leaders.
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I know Emily and I would absolutely love to have you back for a much longer conversation on such a really compelling subject.
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And you know how you've how how you are changing the world, actually, because it it's really powerful.
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So thank you.
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Yeah, thank you.
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You've been listening to Get Real, talking mental health and disability, brought to you by the team at Irma365.
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Get Real is produced and presented by Emily Webb with Karenza Louis Smith and special guests.
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Thanks for listening, and we'll see you next time.