Mental health advocate, heart of gold, eternal optimist.
Rose Cuff is an eternal optimist. Which is hard to believe when, over the 34 years of her career working in mental health and the last 25 working with children and families where a parent has a mental health challenge, she has been the keeper of a huge number of distressing and heartbreaking stories. But stories too of hope and resilience. Rose has only ever wanted to make a positive difference to this world and has used the diversity of these experiences to grow, to learn, to heal, and to try and support people in whatever way they want.
As a university student in England in the 1970s, Rose took the lesser trodden path in her occupational therapy degree, away from the physical and down the psychiatric route. Horrified at the extent to which people living with a mental illness were ostracised, mistreated and misunderstood, Rose has made it her life’s work to create safe and non-judgemental environments for every person that she comes across.
Bringing her knowledge and enthusiasm to Australia in 1981, Rose has ended up, by fortunate accident, working primarily with families where a parent has a mental illness. In realising there was little to no support for the children, who felt an overwhelming sense of loneliness and isolation in their situation, Rose now heads up The Satellite Foundation, a not-for-profit committed to changing outcomes for children and young people where a parent has a mental illness, to futures of hope and possibility.
Rose is also the mum of one of my very good friends, and I spoke to this kind, generous human being about the importance of sharing story to create community and a sense of belonging, changing the dialogue and stigma around mental health, and the power of how just listening can bring about your biggest lessons in life.
Rose Cuff is…
I think I’m someone who’s also always wanted to be in people’s lives in the best possible and positive way that I can. Because it’s a two way thing, that it’s not just a way that might be helpful for them, but I also find it gives me purpose and meaning in life. I think that in allowing people to shape my life, and me to shape theirs in a really gentle, positive way, then that makes me happy.
I’m also probably one of the most optimistic people, you know, like ridiculously optimistic. It comes from a childhood living in grey old England, and my mother was a very optimistic person too. She used to think the sun was coming out, even when it was pouring rain. And I’m really grateful for that. I’m really grateful that I carry that optimism, because I think it’s the best thing we can be and the best we can give. It’s actually a mantra of mine – being the best you can be for yourself and others.
What is it that you do and when did you decide this is what you wanted to do with your life?
The second question first, because it’s all intricately bound up. I work in mental health and I can remember almost exactly when I made the decision to do that. I was studying to be an occupational therapist, and as part of the training we did back then, we spent half our focus working to support people that have physical disabilities and half the time on psychiatric disabilities.
Very early on, I had no understanding of mental illness, but I could tell the psychiatric side was not seen as equally important and that began to irritate me. I’d learned enough by then to know that the stigma that people experienced back then, we’re talking 1977 in England, was just profound and shocking.
I can imagine it wasn’t talked about, was it?
It wasn’t talked about, it was deeply shameful. This is when they still had the big psychiatric hospitals open. So that was a turning point. I remember thinking, this is not right, and nobody else felt the same as me. Nobody else felt so angry and I began to think there’s something wrong with me, because I was so angry. That was the moment I decided to learn more about and just try and sit in the shoes of people living with mental illness.
There were two other things that profoundly influenced my decisions to stay in mental health. The first one was a close family member who developed a serious psychotic illness, schizophrenia. I feel very privileged to have had that person in my life, to love them and learn from them.
And the second thing that happened got me into my current field, which is working with families where a parent has mental health challenges. I was a young mother myself and doing a locum in a community mental health clinic in Toowoomba. It was 1994. I was very naive and hadn’t worked in that kind of setting before. One day a woman came in to see me for the first time, and in preparation I had a look in her clinical file which was very thick. Buried somewhere in there was the fact that she had children, and they had been in and out of her care because of her mental illness, but there was almost nothing written about her children or her as a mum.
So without thinking about what I was saying, or how she might hear what I was saying, I said in my enthusiastic way without any preamble, I’ve got young children too, and let’s talk about children! And she was terrified because she thought I was going to judge her, and question her negatively and even take her children away.
I hadn’t understood that, and it wasn’t until she left the room clearly distressed that I realised, and that took me on a really big journey, of accepting that there was a huge amount I just didn’t understand. But I wanted to understand, and I wanted to make a difference. I wanted to make it better. That was the big turning point that got me into this current area of work.
Can you tell me about your work with The Bouverie Centre?
The Bouverie Centre is a state-wide organisation that works with and for families, with family therapy at the core of it. I’ve been there 13 years, and my role has been to coordinate a program across Victoria for families where parents have mental illness, and I have also developed some programs for children.
What do you mean by programs?
When I landed in Melbourne ‘95, I was lucky enough to get a job doing the first ever research project at the Mental Health Research Institute looking at the impacts on children if they had a parent with a mental illness. It was a two year project and, broadly speaking, nothing like it had been done before.
I set about doing interviews with children and their parents, and found that the children felt extraordinarily alone. They felt they were the only ones who were going through that experience, that it was their fault that their mum or dad had a mental illness, and that they had to fix it. Parents were feeling alone and carrying a deep sense of shame and guilt.
Often children have no idea what’s actually happening and you can see them scrambling to make sense of it – some parents may be having psychotic symptoms like paranoid delusions or hearing voices and their children are trying to interpret it as best they can.
Generally, children are intensely loyal and in my experience are especially so in this situation, so they don’t tell anyone what’s going on at home. So there’s this perfect storm of illness and stigma, this bloody great elephant in the room, and children not knowing what’s going on. So these were the things I was finding out from these kids throughout the project.
In my completely naive and optimistic way, I responded by creating a program based on this concept of peer support, which for me remains one of the most important things I have done. The first program I wrote, I called it CHAMPs, which was loosely Children and Mentally ill Parents, but it deliberately also has a very positive connotation.
It was an after school program for children in primary school to come together, to know they aren’t alone, to learn about mental illness, and to have some fun. That program is still being run in different parts of Victoria. We took kids on camps and horse-riding, and it was those same things that kept coming up again and again, where children would say how incredible it was to see other kids with similar experiences.
One thing I don’t want to do is to portray the kids or the families as victims. Some of them live in extraordinarily difficult circumstances. But I always assumed the best. I always assumed that the parent or the parents wanted the best for their children, even in the face of really huge adversity, they were the ones who knew their children best.
I mean, it may or may not have been the understanding years ago, but I feel like it’s quite well known now that mental illness is just that, an illness. It’s not something that people can control for the most part?
There’s a bit of controversy about that because of the role that our environment and childhood experiences influence our mental health and wellbeing. The nature vs. nurture debate. The role of medication is important as some people have a really positive response. Many people living with mental health challenges or with a mental illness have a history of childhood trauma and we know a lot more now about what helps people recover from trauma. So anything that we can do to break the intergenerational wheel or cycle of trauma is important – we want to be able to provide different experiences to change this pattern.
Can you tell me about the Satellite Foundation? Was that a by-product of your work at the Bouverie Centre?
The Satellite Foundation was one of my light bulb moments – they’re very dangerous! The Foundation came about in 2009, when I was moving from a clinical role at Eastern Health into my current one at The Bouverie Centre – the Families where a Parent has a Mental Illness (FaPMI) program coordinator which supports mental health and family services across the state work to improve the way they respond to families, parents, and children. And it is funded by the Victorian Government! With a change in funding focus, there was a risk the CHAMPs programs and camps we’d been running would not be continued. I was at a conference I think in Adelaide and was naturally talking about the programs, because they are my passion, and as a throwaway comment said, “Why don’t we start a foundation or a charity?” And that’s what ended up happening.
I knew a lot of people who were as passionate about it as me but we had no idea how to start a charity. So it was a lot of asking around for lawyers, people who knew about business banking, all the things you actually need to set up a not-for-profit organization. Up to this point, the work undertaken by Satellite has been in a voluntary capacity, with a dream that one day we would be funded. So I’ve been doing two jobs for 11 years!
Fast forward to now, and amazingly Satellite has funding for 12 months subcontracted to work with Emerging Minds, which is an amazing National Workforce Centre for Child Mental Health funded by the Commonwealth Government, and I’m moving into the role of Satellite’s Executive Director full-time.
I’m really keen to see how the FaPMI program and Satellite can work in a complimentary way so that workforces are supported to build capacity to work with families. This way families get greater access to the kinds of fun and sharing and connecting and creative experiences that will make a difference in their lives. And it’s not just for a few kids. I want all kids and all families to experience that. I want them all to know they’re not alone, that they can do incredible things.
I’m still in contact with some of the young people that I have known now for 20 years, since they were eight and in a CHAMPs program. They are incredible young people, so strong, so kind and so compassionate.
I think that’s testament to the program, and to you, to the experience these young people had with those programs.
I think the kind of connection with others, the peer support, undoubtedly made a difference to their lives, but it’s also about how they have their potential recognised and that they have learned how to survive, to thrive, and have learned skills that will equip them for life.
Some people say it’s terrible that children have to cook for their mother who is in bed with depression, or they have to look after younger siblings and maybe take them to school, or call for help in a crisis. And of course for lots of those young people, without knowing that they can get support means it can be really tough, and they may go down a different road.
But I think because the kids who came to programs like CHAMPS heard stories from others and got support from people working in the space that said – you are amazing. Yes, you have a big load to carry, but you’re smart, you’re caring, you’re kind, you can help run the camp, you can take on leadership roles. We want to harness and tap into your wisdom and your knowledge. It goes back to purpose.
When I was 20, what I wanted to do was make a difference. And that’s part of the human spirit. A key voice from Satellite is to turn round the dialogue from one of pity to, what can we learn from you?
What tools and what skills are you hoping to equip these young people with?
So Satellite is in the middle of a really exciting online program for young adults, Satellite Connect, which will equip them with skills around how to share their stories in positive ways and how to both hear other people’s stories from a position not of judgment, but of curiosity. It’s amazing seeing how already being in the program diminishes their sense of isolation, loneliness and disconnection. We want to give people who do the program a sense of connectedness and belonging and let them know that they are really important, that they have something to offer.
We also want to equip them with skills to understand how to look after themselves from a self-care perspective. Self-care and self-compassion is really important for anyone, but what we know is that young people in families where parents have a mental illness can take on substantial caring responsibilities, so can end up feeling that they don’t deserve to look after themselves. All their energy is going into looking after other people. It’s the classic reminder about putting your own oxygen mask on first! There is a workshop on storytelling and public speaking and communicating creatively, and all the participants will be able to complete Mental Health First Aid for free, which is a really important qualification and will support their opportunities to work or volunteer in Satellite or similar organisations. So for example, we would love the young people who complete Satellite Connect to be part of designing our resources for children, running camps, helping to facilitate our workshops. So exciting!
I would think that one of the biggest things that they have to offer is that lived experience – that’s a really unique, special offer that no training can provide.
Completely. It’s at the heart of Satellite that we really want to keep hearing and including and involving. We’ve got a growing group of young people who we call our Satellite Squad, who have been through the programs. They will be supporting what we call our Satellite Squids, which is going to be the group of younger children who come through the programs.
It’s quite extraordinary when you see a younger child, say nine year old, in a program with older kids. They talk to someone who’s older and who’s perhaps at uni, or working, and they can see that anything is possible. They can see that they’ve got a similar story to them, but they got through it.
I feel like a lot of there’s a lot of hardship around you and it would be hard to not take on a lot of that emotion. I know you’re a very optimistic person, but how do you protect yourself, and ensure that you’re not taking on a lot of the struggles of both the young people, but of the parents and the families as well?
It’s something I’ve asked myself a lot over the years. It’s always ensuring you’re getting really good support and supervision – incredibly important – and having an external sounding board that will just absorb the feelings. Remembering what you can and can’t do.. And to trust that people can and do survive.
I really want to credit my family, that is, my family of creation, my children. They are the most important people in my life, and without a doubt, having them has really anchored me because they make sure I’m looking out for myself. If I don’t look after myself, I’ll run myself ragged, and then I can’t be what I want to be for them. It’s filling your own cup, isn’t it?
But most importantly it’s striking a balance between being permeable and open enough to actually hear the stories and sit and listen. And then to be able to say, that’s not my story. And there’s certain things I can change, but also that I can’t change. I tell my kids all the time, you can only control what you can control. So just focus on the things that you can change, and what you can’t, you have to just let go of.
Have there been any particular people you’ve worked with that have shaped this perspective?
So many incredible people have shaped my life and when you ask this question I come back to the people I’ve met who allowed me to sit for a moment in their shoes.
When I was a student at a very big psych hospital, a young woman was in hospital in the ward because she had tried to end her life. She was about my age, and I went to see her and I was so shocked that she had tried to end her life and I just wanted to fix it, because I was very young and I just wanted to make everything better.
I began to talk to her in that way of trying to suggest solutions, and I remember, she put her hands up and she said, “You don’t need to talk. I want you to sit and just be, just feel and be that’s all you have to do”. I’ve never forgotten that.
With all that training, I can imagine that it would be so hard to not want to find a solution for everyone’s problems. That sometimes, just being there is what they need.
There are times when I have to keep coming back to that person in that bed, to what she said. Basically, I scared her. I went in like a bull in a china shop. So in my career, but also in my life, you have just got to be humble enough to say, I don’t know or I need to stop. Practicing humility and being reflective enough to be able to say, I stuffed that up, it’s not easy. We’re all flawed and we’re not always going to be right, not always going to do the right thing and we will make mistakes.
I think really the greatest teachers have been the people I’ve worked with, who’ve had the courage to trust me, to say things to me or to just to allow me into their lives. Like the woman in that bed, or the children who are carrying the weight of the world on their shoulders but have still allowed me to learn my greatest lessons through them.
What’s next for the Satellite Foundation? I hear you’ve recently received some funding, congrats! What will that be used toward?
Well we have started Satellite Connect and we will be running three more of those, open to people from across Australia. We are also planning a heap of really cool activities for younger children and teenagers kicking off this next school holidays. We have a fantastic Creative Director so there will be photography, graffiti, music and song writing, creating ‘creature comforts’, and of course connecting up with others and making friends. And camps and retreats again once restrictions have changed!
How would you like to see the Satellite Foundation grow over the next five years?
I would like Satellite, and the programs Satellite runs, to be available across the whole of Australia. A lot of that would be in partnership with other organisations and with lived experience at the heart.
My dream would be that it wouldn’t matter where you live, whether you live in Geraldton or in Hoppers Crossing, that there would be a central point of contact, a national hub where you can find out what you need to know. A place where you can talk to someone, share your unique story with someone who gets it, sign up for a program or event that is right for you, learn new skills, contribute to designing a new program or resource. Infinite possibilities for people with infinite potential.