TRANSCRIPTION 🔗
WEBVTT
00:00:00.320 --> 00:00:06.639
Get Real is recorded on the unceded lands of the Boonerong and Warunjury peoples of the Kulan Nation.
00:00:06.879 --> 00:00:11.279
We acknowledge and pay our respects to their elders, past, and present.
00:00:11.519 --> 00:00:24.719
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.
00:00:28.160 --> 00:00:31.519
Welcome to GetReal, Talking Mental Health and Disability.
00:00:31.839 --> 00:00:34.240
Brought to you by the team at Erma 365.
00:00:34.719 --> 00:00:44.880
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.
00:00:48.640 --> 00:00:55.359
We recognize people with lived experience of mental ill health and disability, as well as their families and carers.
00:00:56.479 --> 00:01:07.519
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.
00:01:12.400 --> 00:01:28.079
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.
00:01:28.480 --> 00:01:39.280
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.
00:01:39.439 --> 00:01:41.599
Now she's the Chair Commissioner.
00:01:41.840 --> 00:01:52.560
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.
00:01:53.040 --> 00:01:54.959
Now let's hear from Maggie.
00:01:56.319 --> 00:02:01.359
Maggie, we're recording live from the Complex Needs Conference, day two.
00:02:01.599 --> 00:02:02.959
It's been great so far.
00:02:03.120 --> 00:02:04.480
How have you been finding it?
00:02:04.560 --> 00:02:06.079
Like you were here yesterday?
00:02:06.319 --> 00:02:07.680
Yeah, I was here yesterday.
00:02:07.840 --> 00:02:13.039
The workshops that I went to, like the first keynote speaker, really started the day off well.
00:02:13.199 --> 00:02:14.960
I thought she was fantastic.
00:02:15.199 --> 00:02:28.400
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.
00:02:28.639 --> 00:02:37.120
And it really, you know, I've worked in a lot of spaces, homelessness, youth work, sexual assault.
00:02:37.280 --> 00:02:48.080
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.
00:02:48.639 --> 00:02:55.039
We had a really interesting conversation yesterday about sometimes we seem to have a justice response to complex needs.
00:02:55.120 --> 00:02:57.039
And is that is that the right kind of response?
00:02:57.120 --> 00:03:11.360
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.
00:03:11.759 --> 00:03:21.360
You know, the general public and politicians often go to law and order as a standing kind of platform.
00:03:21.919 --> 00:03:35.280
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.
00:03:35.520 --> 00:03:43.120
It makes a whole community of people in the justice system separate to who we are.
00:03:43.520 --> 00:03:44.879
And how is that fair?
00:03:45.039 --> 00:03:46.719
It's just not right.
00:03:47.439 --> 00:03:55.759
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.
00:03:55.919 --> 00:04:02.719
So I'm interested in what are the key things that you're gonna, you know, really want the audience to hear today.
00:04:03.120 --> 00:04:08.960
Well, I think one of my key platforms is about elevating the voice of lived experience.
00:04:09.199 --> 00:04:55.839
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.
00:04:56.560 --> 00:04:57.680
What does that say?
00:04:57.920 --> 00:05:00.480
So that's one of the messages that I'll be giving.
00:05:00.720 --> 00:05:24.560
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.
00:05:24.879 --> 00:05:37.360
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.
00:05:37.759 --> 00:05:39.680
That quit.
00:05:40.319 --> 00:05:43.600
I can get you here, I can get you this support, I can get you that support.
00:05:43.680 --> 00:06:00.079
So when they come across somebody
Load full transcript
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.
00:06:00.879 --> 00:06:03.439
I think that's very powerful, isn't it?
00:06:03.519 --> 00:06:07.279
Uh I think when you give people it's about power, isn't it?
00:06:07.360 --> 00:06:08.560
It's about giving people power.
00:06:08.720 --> 00:06:15.920
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.
00:06:16.000 --> 00:06:23.279
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.
00:06:23.360 --> 00:06:24.399
And look, I'm English, right?
00:06:24.480 --> 00:06:37.040
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.
00:06:37.199 --> 00:06:38.240
And I thought that was really powerful.
00:06:38.319 --> 00:06:46.560
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.
00:06:48.160 --> 00:06:51.279
Uh it's interesting that you say about passive care.
00:06:51.759 --> 00:07:04.000
I think one of the biggest points about First Nations consumers is that they always having to fight to be heard.
00:07:04.399 --> 00:07:16.560
Fight for their land, fight for their history, fight for their farno, fight for every single thing that they do.
00:07:16.800 --> 00:07:29.600
So they often answer back when somebody's trying to tell them what to do, and that puts them on the outer straight away.
00:07:29.920 --> 00:07:31.759
They're standing up for their rights.
00:07:32.160 --> 00:07:38.160
And sometimes services I won't say sometimes, services don't like that.
00:07:38.480 --> 00:07:43.680
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?
00:07:44.000 --> 00:07:52.879
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.
00:07:53.360 --> 00:08:00.959
It's part of the system we're in because of colonialism, we're very paternalistic.
00:08:03.759 --> 00:08:10.319
Yeah, we're a paternalistic society and we other others to be less.
00:08:11.120 --> 00:08:23.040
And I think what this conference has done for me is really reminded me who I'm here for.
00:08:23.360 --> 00:08:25.439
I think I always know who I'm here for.
00:08:25.519 --> 00:08:33.919
Like I I I am 150% committed to elevating the voice of lived experience consumers.
00:08:34.480 --> 00:08:35.279
Totally.
00:08:36.480 --> 00:08:47.919
But in my travels and in my work, I haven't forgotten the complex consumers I used to work with.
00:08:48.399 --> 00:08:54.799
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.
00:08:55.600 --> 00:08:58.720
And and she said, I used to work with so-and-so.
00:08:59.120 --> 00:09:01.039
And I said, Oh, I work with so-and-so too.
00:09:01.120 --> 00:09:02.320
And she said, That's where we met.
00:09:02.480 --> 00:09:08.799
We worked with this young bloke who was a complex care client 15 years ago.
00:09:09.120 --> 00:09:09.679
Wow.
00:09:10.000 --> 00:09:13.039
And he stood out to us, you know, both of us.
00:09:13.200 --> 00:09:28.879
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.
00:09:29.120 --> 00:09:35.279
Absolutely, and so I'm going to do whatever I can to elevate their voice.
00:09:35.519 --> 00:09:36.639
I'm excited, Maggie.
00:09:36.720 --> 00:09:37.360
That's really good.
00:09:37.440 --> 00:09:42.960
And I think if the conference is doing that for all of us, that's an that's a really awesome thing.
00:09:43.440 --> 00:09:52.240
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?
00:09:52.639 --> 00:09:53.200
Sure.
00:09:53.519 --> 00:09:58.559
So I have been diagnosed with schizophrenia.
00:09:58.879 --> 00:10:03.120
I don't really like that title.
00:10:03.440 --> 00:10:04.559
I never have.
00:10:04.879 --> 00:10:10.000
But what it means for me is I hear voices 24-7, homicidal voices.
00:10:10.639 --> 00:10:14.159
I have experienced the weirdest thing lately.
00:10:14.399 --> 00:10:17.919
For 25 years, I haven't been able to go to the movies.
00:10:18.720 --> 00:10:26.320
So I go to movies, but I don't stay in the room because I hear voices the minute the lights go down.
00:10:26.559 --> 00:10:31.600
So I've had to get up and walk out and just not go for 25 years.
00:10:31.840 --> 00:10:41.679
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.
00:10:42.000 --> 00:10:42.559
Wow.
00:10:43.200 --> 00:10:45.360
And I don't know what that's about.
00:10:45.600 --> 00:10:47.679
But I'd be like, this is good.
00:10:47.840 --> 00:10:50.080
Yeah, it's it is really weird.
00:10:50.320 --> 00:10:52.320
But I still can't watch TV.
00:10:52.639 --> 00:11:00.159
I can't read books because I get messages in the books, and my son asked me, he said, what kind of messages?
00:11:00.320 --> 00:11:03.279
And I said, Well, you know how you have the introduction.
00:11:03.440 --> 00:11:06.240
Well, my introduction is really horrific.
00:11:06.639 --> 00:11:14.320
So, and it continues throughout the book, but I can't
watch TV, and so I spend a lot of time in silence.
00:11:14.799 --> 00:11:24.000
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.
00:11:24.320 --> 00:11:27.039
So that's it's called drug-induced Parkinson's.
00:11:27.120 --> 00:11:27.360
Yeah.
00:11:28.080 --> 00:11:31.360
And so I take Parkinson's medication now for that.
00:11:31.600 --> 00:11:34.159
So, because they never tell you when you take medication.
00:11:34.240 --> 00:11:37.039
Like I've been on heaps of medication over the years.
00:11:37.279 --> 00:11:40.159
One gave me a heart murmur, that was clozapine.
00:11:40.720 --> 00:11:42.799
They never tell you the side effects that happen.
00:11:42.960 --> 00:11:45.039
You know, you you put on heaps of weight.
00:11:45.759 --> 00:11:50.399
You for people who are on lithium, they get the shakes.
00:11:50.799 --> 00:11:53.200
Uh it's quite and it can be quite severe.
00:11:53.600 --> 00:11:57.759
So they never tell you the side effects, they just say, take this tablet or take this injection.
00:11:57.919 --> 00:11:58.320
Yeah.
00:11:58.559 --> 00:12:03.120
And I tell you, so I'm on the depot, and what is that, Maggie?
00:12:03.519 --> 00:12:05.759
That's an injection every fortnight.
00:12:06.080 --> 00:12:12.080
Most people who are on the depot mandated to take it, they don't have a choice.
00:12:12.559 --> 00:12:15.759
And so for 10 years I didn't have a choice.
00:12:16.080 --> 00:12:23.360
And you can try to get off it, but it's really hard to get the powers that be to listen to you.
00:12:23.519 --> 00:12:24.960
But it works for me.
00:12:25.279 --> 00:12:28.559
So I voluntarily take it.
00:12:29.039 --> 00:12:32.159
But there's this little part of me that thinks, why should I?
00:12:32.639 --> 00:12:33.440
Why should I?
00:12:33.600 --> 00:12:35.440
You know, like, where's my rights?
00:12:35.519 --> 00:12:35.679
Yeah.
00:12:35.919 --> 00:12:37.840
And being able to say, I'm not gonna take it.
00:12:38.080 --> 00:12:39.360
That's a big question, isn't it?
00:12:39.600 --> 00:12:41.840
Well, I don't have rights in that paint, in that space.
00:12:42.000 --> 00:12:43.360
Well, not if you're made to take it.
00:12:44.720 --> 00:12:46.320
Just they're taken away.
00:12:46.559 --> 00:12:52.159
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.
00:12:52.240 --> 00:12:53.759
I think people think, oh my god.
00:12:54.000 --> 00:13:00.080
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.
00:13:00.159 --> 00:13:04.559
Like, you know, you have who's the bad character, we'll give them schizophrenia, that'll explain all of the bad.
00:13:05.039 --> 00:13:06.559
They hearing voices, you know.
00:13:06.879 --> 00:13:08.480
Yeah, so that's smash a few myths.
00:13:08.559 --> 00:13:15.360
I mean, here you are, consumer commissioner, working for the Victorian government, living as a person who has schizophrenia.
00:13:15.600 --> 00:13:19.600
What would you say to people that are listening to the podcast?
00:13:20.720 --> 00:13:28.399
What I'd say is don't believe everything that you bloody read or that you see.
00:13:28.559 --> 00:13:28.639
Yeah.
00:13:29.919 --> 00:13:30.399
So true.
00:13:30.720 --> 00:13:32.639
It's just not how it is.
00:13:33.039 --> 00:13:40.639
I mean, I wasn't there have been times in the past where I've been really dangerous.
00:13:41.279 --> 00:13:48.240
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.
00:13:48.879 --> 00:13:50.720
It just happened.
00:13:51.039 --> 00:13:59.759
And from trauma in my childhood, from trauma in my life, don't listen to everything that you read or everything that you see.
00:14:00.000 --> 00:14:09.600
And most of the portrayals of people with schizophrenia on TV and movies and that is just so extreme and just so ridiculous.
00:14:09.840 --> 00:14:12.159
It's just it's just not how it is.
00:14:12.639 --> 00:14:14.320
It's irresponsible.
00:14:14.639 --> 00:14:16.480
Yeah, it's more than irresponsible.
00:14:16.559 --> 00:14:27.759
It it just theatre painting a picture and media painting a picture of othering some parts of the community.
00:14:28.240 --> 00:14:31.759
So we as the public are always suspicious of them.
00:14:32.639 --> 00:14:40.399
Yesterday, at the end of the day, I had the most fantastic conversation with two people, two voice hearers from Voices Vic.
00:14:40.559 --> 00:14:49.840
And wow, they they mentioned you, like it I learned so much because it's so great.
00:14:49.919 --> 00:15:15.759
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.
00:15:16.320 --> 00:15:16.799
That's right.
00:15:16.879 --> 00:15:23.919
There are some voice hearers who hear positive voices and they enjoy the conversation that they have with them.
00:15:24.240 --> 00:15:27.440
But voices, they're they're fantastic.
00:15:27.679 --> 00:15:31.679
And I did training with them like 20 years ago.
00:15:31.919 --> 00:15:47.120
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.
00:15:47.360 --> 00:15:51.519
What a difference that is when you realize I'm not the only person that feels this way.
00:15:52.639 --> 00:15:53.600
Well, I felt that way.
00:15:54.000 --> 00:15:58.799
I mean, I I felt that way when I when I c when I discovered Voices Vic.
00:15:59.200 --> 00:16:06.799
It was
like, oh, I'm not the only person, and I'm not the only person being tormented by my voices.
00:16:07.120 --> 00:16:10.080
So it was really an awakening.
00:16:11.360 --> 00:16:17.679
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.
00:16:17.840 --> 00:16:19.279
I thought, oh, I'm gonna do it.
00:16:19.360 --> 00:16:27.279
Like it's so that I was just tired yesterday, but after speaking to it was Janet and Harley, and I was just pumped.
00:16:27.360 --> 00:16:30.960
I was like, oh Karenzo, I just had the most amazing conversation.
00:16:31.200 --> 00:16:31.519
Yeah.
00:16:31.759 --> 00:16:37.440
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.
00:16:37.519 --> 00:16:44.720
And I went to see a play, and the play was written by the sister of a woman who had schizophrenia about hearing voices.
00:16:44.960 --> 00:16:45.919
It was so well done.
00:16:46.000 --> 00:17:07.279
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.
00:17:07.680 --> 00:17:19.200
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.
00:17:19.839 --> 00:17:25.839
So Yeah, you proved your psychiatrist wrong, Maggie, because you ended up working for government.
00:17:26.160 --> 00:17:31.680
Well, I mean, the thing with my psychiatrist, he used to say to me, I think you need to give up work.
00:17:32.000 --> 00:17:39.519
I think you need to go on the disability support pension and and just not do anything.
00:17:39.759 --> 00:17:42.400
And the more he said that, the more I worked.
00:17:42.480 --> 00:17:54.400
Yeah, because work actually gave me consistency, it gave me my own personality, and so I just worked and worked and worked.
00:17:54.640 --> 00:18:08.160
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.
00:18:08.400 --> 00:18:09.279
I love that.
00:18:09.519 --> 00:18:12.880
If I can be commissioner, trust me, you too can be commissioner.
00:18:13.119 --> 00:18:23.359
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.
00:18:23.519 --> 00:18:32.480
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.
00:18:33.039 --> 00:18:37.920
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.
00:18:38.079 --> 00:18:38.799
What would you say?
00:18:38.960 --> 00:18:40.079
What would you say to them?
00:18:40.559 --> 00:18:46.480
To the to the carers, to the carers, and and also the also people who have just you know got that diagnosis.
00:18:46.640 --> 00:18:48.000
Now this is what's happening for you.
00:18:48.319 --> 00:18:49.599
There is recovery.
00:18:49.839 --> 00:18:50.880
There is recovery.
00:18:50.960 --> 00:19:01.680
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.
00:19:02.000 --> 00:19:09.759
And for those of you who have been diagnosed with any diagnosis, you are your own leader.
00:19:10.079 --> 00:19:13.680
No one can lead you better than yourself.
00:19:13.839 --> 00:19:15.680
You know yourself better.
00:19:15.920 --> 00:19:22.079
So stand up for your rights, stand up, stand up and be proud of who you are.
00:19:22.240 --> 00:19:24.160
There's nothing to be ashamed of.
00:19:24.400 --> 00:19:33.359
And for those who look after people who have got a diagnosis, you can watch them thrive.
00:19:33.599 --> 00:19:46.160
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.
00:19:46.799 --> 00:20:04.880
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.
00:20:05.200 --> 00:20:11.759
Maggie, there's no doubt that you are an incredible human being, you know, absolutely.
00:20:11.920 --> 00:20:17.119
And I love your fire and passion and energy and the things that you talk about.
00:20:17.200 --> 00:20:22.559
And I know you're going to be absolutely stellar on today's complex needs panel with First Nations leaders.
00:20:22.640 --> 00:20:29.599
I know Emily and I would absolutely love to have you back for a much longer conversation on such a really compelling subject.
00:20:29.680 --> 00:20:35.599
And you know how you've how how you are changing the world, actually, because it it's really powerful.
00:20:35.680 --> 00:20:36.079
So thank you.
00:20:36.319 --> 00:20:36.720
Yeah, thank you.
00:20:39.680 --> 00:20:45.599
You've been listening to Get Real, talking mental health and disability, brought to you by the team at Irma365.
00:20:46.319 --> 00:20:51.519
Get Real is produced and presented by Emily Webb with Karenza Louis Smith and special guests.
00:20:51.839 --> 00:20:54.079
Thanks for listening, and we'll see you next time.