Talking with Louise Byrne

Louise Byrne, as far as anyone knows, is the world’s first full-time lived experience academic in mental health. It’s her official role at an Australian university, and she came to my attention when her recent thesis popped up on a Lived Experience Research Network listserv. Her introduction, conclusion and particularly chapters four and five are a good read.

“Anything to do with the mental health sector must have lived experience leadership,” she says. “Any organization that currently has lived experience or consumer participation needs to look at a major upgrade.” She explains, in her thesis and our talk, how to make that happen.

In our conversation, she also briskly but thoughtfully addresses tokenism, the co-opting of recovery, the “clinicians’ delusion” and plain old misunderstanding. “Like the gay rights movement, unless we stand up and are unashamed of our experiences, nothing will change,” she says.

Who are you? Please introduce yourself.

My name’s Louise Byrne. I work from my lived experience of mental health challenges and using mental health services and on the importance of recovery. I’m 36. I live in Rockhampton, a fairly small, semi-rural community.

How did you come to be talking with me?

Well, I used mental health services for probably 15 years. I was first hospitalized in my mid-teens. Specifically speaking with you, I did seriously attempt to commit suicide a number of times in my teens when I was very unhappy. I was OK for a while, then had rough times in my mid-20s. I was deeply disenfranchised with life again at this point, but being older and more connected with my family, I didn’t attempt suicide, but I had no connection with life, either. But a couple of years later, I found the idea of peer work, working from lived experience, and it made a lot of sense to me. It was the beginning of a different journey.

I worked in government services, and I trained in intentional peer support. Currently, I’m a lived experience academic in mental health. It was the second lived experience academic role in Australia and the first full-time position of its kind in the world that we know of.

I have a lot of autonomy and control. For the first time, people are really listening to me. In my other roles, it’s been a matter of being there but relying on the interest of others around me, being reliant on whether they decide to engage with me. Here, I have control. The recovery approach in mental health must be taught from the lived experience perspective now. I have complete control over course content and the way it’s run. I had 480 students last year, and 320 in undergrad and 20 in post-grad this year. Central Queensland University hired another lived experience academic.

I just finished my Ph.D. on lived experience roles across the sector. Because of my diverse experiences, sometimes it’s very tokenistic, other times accepted. It’s not policy but the personalities of the people around me. Here at the university, there’s the acknowledgement of my role as a leader in this space. That was sort of what drove that approach. So, yeah.

You mentioned tokenism …

Well, that’s about being there on paper but not really being there in any meaningful way to effect change. In my research, and anecdotally, I found it most common in government services. And then in my experience in academia, it’s the only place I really felt my role is as accepted as any other role.

With tokenism, if I can talk more broadly, people are not having adequate access to resources, not being remunerated enough, not being included in meetings, experiencing professional defensiveness from colleagues, a range of experiences that stops people from being able to meaningfully do their work. It’s common over here. I think it stems from our roles not being accepted yet as legitimate by a large part of the workforce. It’s allowed to happen because in policy, and where we sit in organizations, we aren’t able to force change. It doesn’t allow us to get in a position to make sure those things happen.

How to get into these positions?

The really important first step was having a powerful ally. Professor Brenda Happell initiated the first consumer academic role in Melbourne many years ago. Here we have schools, institutes, centers. As the director of a center, you can employ someone and no one really says anything about that. She was committed on a personal level to lived experience input and leadership. She brought on a woman who started in this position, Cath Roper. Years later, Brenda happened to move up here, where I was working in a mentors program, a national program. We started talking. She asked if I was interested in doing university work, and I was. I started writing for the mental health program, with an emphasis on the recovery course, in 2009. And then in 2010, there was a scholarship for a Ph.D., and she asked if I was interested. I had put in for a Ph.D. scholarship on a similar topic about six years earlier and not gotten it, so we put in for that. That definitely helped. The scholarship allowed me to focus. She was able to sort of beg and plead and bully her way into a one-day-a-week position for me, teaching in the recovery program.

A lot of early stuff was about powerful allies. At that stage, there was still a mental health nurse in control of the course, and I was feeding into it. With the help of that ally, she was able to argue that lived experience should lead recovery, that it came from us, belongs to us and was unjustly taken away from us. People don’t understand recovery because it’s not taught by people with lived experience.

Then, I was still one day a week. Then the next year, the course was doing well. I was doing the work, and she was leaving me to it. And the response from students was really strong. We were starting to get bigger student numbers. With the strong response from students and other staff and some research Brenda led, we were able to argue for recovery as a core unit of the program. We were able to then argue for my role becoming full-time in order to do that.

Part of that was being lucky in some ways. I think again it was about group consensus. There were enough people in the school who were like, “Yeah, great idea, brilliant.” There are a lot of people who have children with significant mental health issues, and they love my role. They get hope for themselves. They see a lot of sense in it. Really useful. They’re backing it and are happy to see it progress. The academic environment is all about constant change, the next big thing, whereas government services are very resistant to change. That’s part of the reason why we were able to make enormous bounds in three or four years. The decision makers are more open.

Has it also led to a change in disclosure among students or colleagues?

Certainly to me. But I always have that experience. When I tell people what I do for a job, it’s a very common experience. Within the school itself, I don’t know it shifted in terms of culture, people talking about their own stuff more broadly with each other. It’s a fairly sort of special group of people anyway, very supportive. People are aware of what’s going on for each other. I don’t think I can claim credit.

What’s needed to have these lived experience positions spread elsewhere?

First, you need to create targeted positions. Without lived experience in positions of authority, you’re unable to see meaningful change happen. Colleagues never respect what they’re saying as long as they’re low on the social ladder. Just relying on the kindness of strangers certainly has not got us where we need to be at. Targeted positions in senior places in a range of positions and organizations. Anything to do with mental health reform should be clearly led by lived experience people in positions of authority.

I think we need a lot more research. The first thing we need as a movement is to define our own theory, what underpins us. Things like intentional peer support has done that beautifully. But as a wider movement, we need to define what makes us us. So we can say, this is what defines us, the perspective from which we speak. We need to get in there before others get in there, mental health officials, before us. There’s training here that’s not necessarily lived experience-led but directed at our group. Research, unified statements, where we’re coming from and where we’re headed. Like the recovery movement, we’re at risk of being co-opted.

It’s been co-opted?

Yes, to a large degree. All you have to do is Google search academic articles, and there’s not a single person with lived experience in sight in a lot of these articles. There’s a strong use of clinical terminology. The thing we hear a lot is, clinicians are not clear about what recovery is. I think the concept has very much been co-opted. There’s frustration on both sides. Clinicians are just saying, “What is this? It’s just words.” People with lived experience are saying, “This is not what we’re talking about.”

When you mentioned targeted positions in organizations, what kind of groups do you mean?

Anything to do with the mental health sector must have lived experience leadership. Any organization that currently has lived experience or consumer participation needs to look at a major upgrade. One issue we’re having is people talking about consumer participation in the mental health sector but not really doing it. Here we have the Mental Health Council of Australia, you’ve got district-wide mental health services, community-wide, your departments of health and aging, any organization that directly is involved with policy and delivery of mental health services is mandated to have consumer participation, but it might be a few hours a year, one day a week. There are a lot of complaints: “The consumers we get, they don’t do enough,” or whatever. “Their input is not valuable enough.”

If you want to have the best people in the job, create a substantial full-time position and coerce people who are already in good positions. Make sure the jobs are attractive enough.

How has the response been when you say this?

Well it’s early days yet. These are also the recommendations of my Ph.D., which was just released. The good news is, people are reading it. We have a mental health commission here, looking at a range of issues, how fairly things are delivered, change that needs to happen. I know senior people in Queensland are reading it or have read it, so that’s good. I think Health Workforce Australia, which does planning and training for a range of people, including peer workers, people there at least have received it. I think it’s probably too early.

When I speak about it, the initial reaction is always, “Yes, of course, makes sense.” From people who are already on board. For those who are not, there’s normally a bit of conversation afterward. So far, there have been no conversations where people walk away saying, “I see no sense in this.” People agree in principle, but whether that will translate into actual change, I’m dubious. I see this as the very first step in officially stating these things, putting them in the public arena with empirical research that people can use to argue in their own organizations: “In Byrne, it says this and this.” A tool for people to advocate in a range of spaces.

How much of a movement is this?

I’m certainly not the only lived experience academic out there. People have been plugging away longer than I have. I’m following on and taking further research before me. I’m a member of an international service users in academia association. Part of our intention is to make sure research is happening. We’re creating a powerful voice by being unified. We’re only a few years old, but we’re growing.beyond the academic context.

The lived experience movement is quite broad. In Australia, lived experience roles have increased exponentially in the past 10 years, but the majority of people in those roles are not necessarily aware of our collective history or of our power or that we’re a civil rights movement. I don’t know if it’s clear to a lot of people who end up in lived experience roles. It’s one thing we need to make clear.

What’s your impression of the situation in the U.S.?

I’ve had very little exposure. New Zealand is quite advanced, or was. I’m probably more aware of what happens in America from the intentional peer support perspective. In terms of the broader movement, not so much. I get literature from Canada and the UK.

Surprisingly, I must say, since the civil rights movement was so massive in America in earlier decades, I would have assumed it was the language people are using. It’s powerful language. When this work is related to it, it starts to make more sense to people.

How did you make the decision to be open about your experience?

It just made complete sense to me as soon as I heard about that concept. I’d been in youth work since I was 18, working from my lived experience of homelessness and drug use, and in a way it made official the perspective that I thought was valuable.

Like the gay rights movement, unless we stand up and are unashamed of our experiences, nothing will change. As many people coming out as possible. I guess I see it as a social responsibility.

How did people react?

I think people are pretty positive. My family’s pretty proud of me. It’s a small town, and I’m in the newspaper a little bit, talking about this stuff, and my family is certainly proud of me. There’s not the sense of, “Oh god, we wish Louise would shut up about this.” I’m surrounded by people who believe that veil of silence about mental health issues does more harm than good.

What else is needed to take away that silence?

I think it will be a case of small changes to create the larger change. We need to get people respected in our communities, and well-known people, to be out about their experience. Now the problem is, most people, including in the mental health field, believe that mental health issues are chronic and unremitting. That in itself is an enormous barrier for us. We need more education, more people understanding that recovery is possible and even likely. More people standing up and saying, “Here I am, running for Senate or running a successful feed business, and I have significant mental health problems.”

We need to give room for those conversations. People need to be willing to sit with their own discomfort and just go there. It’s a whole of society kind of thing. Small shifts in different areas. Prominent people coming out will encourage that the idea of recovery is possible. Ultimately, what we need is less emphasis on treatment and services and more on community responsibility. Each of us needs to take responsibility for mental health, whether listening to a friend, speaking about your own stuff or what have you.

How do you address the mental health professionals who hold on to stigma?

The best way is to have many, many conversations. The lived experience practitioners, that’s where they really shine. We need to build relationships. It’s more about morning tea conversations, lunch conversations, over time, slowly influencing how they view things.

I think what we call the “clinicians’ delusion” plays into it. Most see people when they’re acutely unwell, and they don’t have the people popping back and saying, “Hey, I’m doing well, back at work.” Their reality is people are unwell, because that’s what they see. They need to do rotations in community-based spaces where people are doing better. They need to be exposed to people who are engaged in their recovery.

Is that happening anywhere?

I don’t think so, not yet. I think some are advocating for it in their own services. I think that’s feasible. The links in Australia between government and non-government are stronger all the time. Recovery is not going away, whether they accept it as rhetoric or not.

Going back to your experience, do your earlier feelings still come back, or are you “cured”?

No, I don’t believe in being recovered. There are certainly times when my mental health slides like an avalanche. I like a life of self-control. It’s not about managing my symptoms. I don’t believe in mental illness. I think of it as stress and distress. I live a life that’s good for me. I eat very clean food. I don’t use stimulants, I don’t drink alcohol, I don’t smoke. I go to bed early. I focus on my wellness.

(I mention what others have told me about being identified as “the exception.”)

What I’ve heard a lot is, “You’re not like our consumers,” which I find deeply offensive. It disregards the 15-year journey I’ve been on to this point. Now if it returns to me, I can get on top of it in a few days. But for many years, I didn’t. Mine is a bad story, it was a living hell. By anyone’s standards, it was a shocker.

I understand where it’s coming from. They see me with my nice dress-up clothes on, where I’m speaking from. But yeah, it denies a lot of things they’ll never understand.

What else would you like to say?

Be brave, take risks. Trust that person. Trust that there’s a person in there. No matter what they look like to you, there’s someone in there who can take control. It’s their mental health, don’t take their reins off them.

What are the next goals you’ve set for yourself?

My big thing is, I want to start conversations. Thousands and thousands. I want to somehow contribute to a situation where a person can walk next door and ask for a cup of flour and ask how the person dealt with anxiety three years ago. I want us to talk about these things. Everything else is Band-Aid measures. In order to truly reverse and change the situation, the terrible situation, where mental health issues are epidemic, we need to stop it from becoming a big issue. We need to reconnect people to others early on, allow them to find support organically, in existing support networks.

Can there be a community among people who’ve been suicidal, or in that case is it not helpful? There’s still the idea out there that putting “those people” together can be dangerous.

No, it’s incredibly helpful! Anyone who has shared unique experiences certainly should come together, because no one else can understand that experience. There’s a lot of that old, paternalistic, in the end not trusting the person who’s experience it is.

What you’re describing is the root of why mental health services on the whole do more harm than good. Mental health services fundamentally do not get us, and they work in opposition to what we need. It’s exactly what you just described. It’s that fundamental idea that we cannot be trusted. And in fact, we can. We just need supports to allow us to work through our trauma, our pain. And who more appropriate than others who’ve been there? And to discourage those people from having those relationships is the opposite of what we need. They’re disempowering us when we need to be empowered.

Can people find your thesis online?

There are a couple of places that put it up. I’ll look into it. I argue for the end of the DSM, so I’m not pulling any punches.

Finally, since you’re more than this experience. who else are you?

I’m a mom of two maltese terriers and two rescue birds. I’m a member of a big extended, loving family. Yeah, that’s who I am.

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9 thoughts on “Talking with Louise Byrne

  1. Wonderful article. I love this idea of those who have lived through, or currently live with any form of mental illness, being at the forefront of helping those with the same struggles. The conversation absolutely should be happening among mental health professionals to dispel the stigma of those with lived experience. Those who know these experiences from the inside out are invaluable in the most effective, successfull treatment for any mental health issues.

  2. Louise, thank you for your wonderful story. I am embarrassed to say that after all your exposition on your work, what really snagged my attention was that you said you didn’t believe in recovery. I was very proud of my “recovery”. I saw myself as “recovered”. But then, a week ago I was in extreme stress and I did something that I hadn’t done for years. I engaged in self abuse for the first time in decades and it was like it had never stopped. I was ashamed, because I “shouldn’t have done that”. Maybe recovery is a continuum, a destination that is a goal, but never really reached. Perhaps there is no on and off, but more or less. And maybe that’s got to be okay. Thank you for sharing. You touched many people, I’m sure. But I thank you particularly for teaching me something that I should have known all along.

  3. Thanks Josh and Mary, it means a lot to get feedback and really inspires me to keep on beating the drum. It can get discouraging sometimes in the system but I always feel re-energised and purposeful when people let me know it matters to them :)
    Funnily enough Mary I wanted to think of myself as ‘recovered’ and therefore unbreakeable/better than, for quite a while and used to get really frustrated when I didn’t live up to the image of who I ‘should’ be. Truth is I felt dangerously close to self harm just last night, luckily I had someone wonderful to talk to. It wasn’t out of the blue, it’s been building up. Despite a good, safe life I still have times – like the last few weeks, when I really struggle to engage with my life but now I know these times will end whereas before I didn’t. To me recovery is about that core concept of having a meaningful life beyond the constraints of mental distress, which I do despite the down times. We’ve been critical enough of ourselves and have enough burdens to bear without the pressure of being ‘recovered’. Now I just accept the down times are part of who I am, and I agree, that’s got to be okay!

    • Louise,
      So very inspiring! It’s so important to make sure it is known that there is light after the darkness. I’m glad you are ok! My mom is diagnosed as bi-polar and she has had countless suicide attempts. I, for years, have tried to remind her that that feeling will pass, and there is always hope just around the corner.Keep staying strong:)
      Best wishes,
      Josh Richardson

  4. Thanks Josh :) I definitely will. Your mum’s lucky to have someone who understands, is empathetic and won’t give up on her, it’s critical.
    Best wishes,
    Louise

  5. Thank you Louise you do make me so happy to know your warmth is the blessing this earth is so greatful please keep the world in the sweet contributions of your life ps love you on qna

  6. Saw you & heard what you had to say on Q & A the other night… was so inspired had to do the Google search.
    I so agree with where yr coming from regarding addressing mental health issues.
    I’m a registered nurse working in general nursing areas.
    Had a major depressive period when my marriage ended twenty years ago & dipped a few times since.
    I was fortunate as my father paid for me to be able to stay in a private psychiatric hospital in NZ (home).
    By far the best thing about it was that sense of it being a ‘soft place to land’…to feel cared about & some sort of respite.
    Working in the ‘health’ system, I’m sensitive to how obstructive/hostile the environment & staff attitudes & behaviour can be.
    I think you’re at the forefront of a much needed long overdue revolution.
    Sincere respect & admiration for the fantastic work you are doing and inspiration you provide.

  7. Thanks Louise for being a voice in the vast wilderness of mental health.
    I have had periods of bad mental health all my life, hospitalised twice! And yes you do need
    A soft place to rest…..I’ve been fortunate to have family and friends all around me!
    People who have suffered mental illness, stress or trauma are so much more emphatic towards others. Now I have secondary stage IV ovarian cancer that is terminal, and funnily my mental health is very strong……life there is always a curve ball

    Kind regards Tricia Paul

  8. Hello to Louise and the genuine replies that you have received. Recovery from a mental illness is ongoing and a supportive group of family, friends or pets enables one to be brave and walk down the pathway of life. Often, the paving is missing and we trip, stumble or fall but with help we can continue the ups and downs in the streets of life. Hugs to each of you great survivors on the MH battlefield and, in particular, to Tricia Paul; the sky needs more shining stars, to cling our hopes and dreams upon, be brave and have no fears because the moon will shimmer over the ocean and the Milky way will speckle the sky to welcome those who have travelled from the dark, dark night.
    Biggest hugs, Gail – Western Australia.

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