Liam MacGabhann, Martha Griffin, Harry Gijbels and Elaine Browne – The Launch of Mad in Ireland
This week on the Mad in America podcast, we are really pleased to be announcing the launch of a new global affiliated site: Mad in Ireland.
Mad in Ireland launches on August the 22nd and joins our other global sites which include Mad in the UK, Mad in Canada, Mad in Finland and Mad in Brazil amongst others. Joining me to discuss the launch and the important role that Mad in Ireland will play are Liam MacGabhann, Martha Griffin, Elaine Browne and Harry Gijbels who are part of the team that has been working hard to get Mad in Ireland up and running.
The transcript below has been edited for length and clarity. Listen to the audio of the interview here.
James Moore: Welcome all, thank you so much for joining me today for the Mad in America podcast. We’re here today to talk about the launch of Mad in Ireland and this is going to be a new global site affiliated with Mad in America. We’ll come on to talk a little bit about the site but I wondered if you could each briefly introduce yourselves and maybe say a few words about how you came to be involved in the project to launch Mad in Ireland.
Harry Gijbels: My name is Harry Gijbels. Thanks, James for organising this podcast for Mad in America in advance of the launch of Mad in Ireland. It’s been a long time coming and I am glad to see it come to fruition now. I’m a retired mental health nurse professional but I’ve worked in mental health nursing education for many years at University College Cork in Ireland. I had a sort of critical position really since I became a mental health nurse myself many, many years ago. I’ve had to shed a lot of knowledge and gained a lot of more valuable knowledge over the years, which as far as I’m concerned, was much more valuable in working with people in distress.
I have been and am still involved in various different projects in Ireland. The main one is the Critical Voices Network Ireland, together with Lydia Sapouna. We kept it going for the last 14 years. I’ve also I’m very active in the Hearing Voices Network Ireland which was launched in 2015. I’ve also been involved in setting up an alternative type of project called the Social Farm to support people in distress or in their recovery. Those are the three main areas of my involvement.
One of the things that led to setting up the Mad in Ireland was the presence of Bob Whitaker some years ago when he did a lecture tour which was organised by the CVNI and Mind Freedom, Ireland. Then Bob came back a couple of years ago at the Cork Critical Voices Network Ireland conference and I think the discussion started there again in setting it up. Here we are a few years later, it’s come to fruition. That’s a little bit about myself, and, and also a little bit about Lydia Sapouna because we’re working closely together on the Critical Voices Network Ireland.
Elaine Brown: My name is Elaine and I’m delighted to be part of this. I was originally trained to be a counsellor and I saw an advertisement in the local newspaper that you could train to be a mental health peer support worker and be open about your mental health to help others on their journey. Immediately I got the application and trained through Leanne McGowan and Paddy McGowan and shortly afterwards quit the counselling and did some amazing training.
I suppose that I’m described as a psychiatric survivor. I would have arrived at the training with what I didn’t know at the time was a lot of internalised stigma. A lot of people who go to the services, I’m learning through the years, like myself would have come out of the services feeling a lot of guilt and shame and that was a long recovery road, rather than the recovery road from my mental health really. I was recovering from the services a lot.
I worked within the services as a mental health peer support worker until 2016. In 2017, I started my own practice as a mental health peer support worker within the community and started having peer support groups in my living room. I started meeting people on park benches, I started Facebook in 2018 and then it all started happening and I had to find premises. Through Dublin City University, I would have been part of setting up the Hearing Voices Group here in Castlebar, in County Mayo in the West of Ireland and officially started the Perspective Mental Health Peer Support Center in Claremorris in 2019.
A lot of what happens at Perspective is very much a constant dialogue in the community about mental health. It’s very much intentional peer support and there would be two peer support groups that would happen during the week. I would also work with children because my mental health really would have started when I was young, so I would work with children in a well-being focused way.
Some of the people who have come to Perspective have gone through DCU and trained as peer support workers. There’s one this year who has just completed the Sheri Mead training in intentional peer support. There’s no kind of intentional plan with what I’m doing in the whole focus of peer support. I’m just taking the next step and just enjoying it all but definitely doing the training back in 2011 for me was a game changer.
Liam MacGabhann: My name is Liam MacGabhann and I’m a mixture of things, I suppose. I’m a lecturer, I’m a researcher and a mental health practitioner. Most of my work which would draw me to Mad in America has centred around alternatives and trying to question and change the status quo. Not just for the sake of it but it’s what the call is from people with experience, from radical professionals, I suppose from anybody who is looking at alternative evidence to the bio-centric model of mental illness. For quite a long time I was drawn to that.
I was spawned in some of the radical movements in England in the late 1980s and early 90s and came back to Ireland with some of those ideas and had the opportunity because I was invited into academia, which at the time was a place where you could get involved in changing practice. Very early on, I was able to get involved in practice that was cutting edge and educational programs that were cutting the edge and collaborating with the Survivor Service Movement from the outset, which is key to everything I’ve done since.
In terms of Mad in Ireland, Elaine referred to Paddy McGowan, he would have, been responsible for starting the visible Service User Movement in Ireland. For a long time, we were nationally and internationally looking at and challenging alternatives and both would have been part of an international movement which brought us in touch with Mad in America and the international network towards alternatives to recovery. Since then it has changed to the international network towards rights-based approaches.
That brought us into connection with the new paradigm development that Mad in America talks about. Trying to shift from a bio-centric paradigm towards a paradigm which is accepted by the World Health Organization, by the United Nations, by various reports and by government policies where it’s really at the regional and local levels that that cultural shift is not happening.
There was a synergy with Mad in America, INTAR and our, I suppose, philosophy and we had several conversations with Bob over the years including at CVNI that Harry talked about. It just seemed right because there was a surge of survivor recognition in Ireland about maybe five years ago and a push to bring them into the voice and the development of statutory services. But then there was what I would consider, and this is personal, a co-opting of what was a really strong survivor services user position. It’s happened elsewhere all over the world. The user voice began to sink and mainstream media only carries the bio-centric voice.
For me, what was the final push for Mad in Ireland was that kind of, “Oh god, here we go back down into another cycle of the voice being suppressed again” socially and media wise. That’s kind of where I’m coming from, it is about giving voice to the new paradigm on mainstream.
Martha Griffin: My name is Martha Griffin and currently I’m working as an expert by experience at Dublin City University. I have my own experience of mental ill health before I ever worked in the area. I suppose what I learned from that was that it never got to the root cause or it didn’t match what I was feeling on the inside. It was lovely to get labeled and it was lovely to think that something I experienced was being taken seriously because it was all inside me rather than outside but it didn’t go any further than that.
I suppose where I got most of my learning was when I worked in the Gateway Mental Health Project in Rathmines and I worked with lots of people who have mental health issues. I suppose when I walked in the door, I said, “Why didn’t I know this was here before that?” It was there that I started having conversations with people and you’d hear people’s stories. I knew very early on that there was no proper science to say it was the brain and there were no quick solutions. When you hear people’s stories of loss or hurt or pain, I suppose that resonated better with me.
I worked in the Gateway Project for seven years and then I finished up there and I ended up in DCU, which I love. It’s great working in the Dublin North, North East Recovery College as well. I suppose sometimes, Liam and I, we’ll have these conversations, we’ll ask ourselves are we doing the wrong thing? We have to reflect because the world outside looks different and you read some good papers, and you’ll say, “Oh that sounds good.” I suppose there’s a truth and there’s a kind of a veneer PR piece as well. I suppose I want to bring the truth into the light as much as possible. That’s kind of why I’m drawn to Mad in Ireland.
Moore: Thank you all for introducing yourselves. You all touched on it in different ways there but I wondered if you had thoughts about the context behind how mental health care is approached in Ireland. Some of you alluded to the bio model, so I just want to ask for your thoughts on how things are now in Ireland and maybe what Mad in Ireland could do differently?
Gijbels: Let’s see if I can reflect on that particular question. I retired from University College Cork five years ago as a mental health nursing educator. I’m still very active but I find it very difficult now to get a sense of what’s happening in Ireland being away almost from it.
If you look at the media, as Liam was saying, you only get one perspective and it’s very difficult. I happen to know a lot of stuff because I have many networks and contacts. I can imagine that for the average person in the country, it’s very difficult to know what’s going on apart from the usual traditional way of thinking because of the information is lacking. I hope that Mad in Ireland can make a position there and maybe share different ways of thinking and working and maybe by doing that we can generate some changes.
We’re all working very hard, in a sense, individually or in small groups, right across the country. There are so many people doing such good work, and that in a sense is how we started the Critical Voices Network Ireland all those years ago to try and bring people together and try and do something.
I think if we can bring all those diverse groups and individuals back together under one roof, we may be getting somewhere. I’m not that optimistic about it because the power of psychiatry and the power of Big Pharma is very strong indeed. But I think being part of an international movement is very important and it’s good to see that Mad in America is moving to Mad in the World. A global network would help us as well in Ireland.
Moore: Thank you, Harry, that discoverability of alternatives is so important, isn’t it? Any thoughts from the rest of you about how mental health care is in Ireland now, and what Mad in Ireland can do differently?
Brown: If I can answer from a peer support worker point of view within the community. I’m in year three within the community and I feel that what’s common to Perspective is ordinarily people would go to the doctor and expect a quick fix or a cure. They’re almost in the mindset of ‘if I take this pill this will cure it’. Or they will go to the services in times of crisis for things that really when you sit down and talk about them and deescalate are grief, loss, long periods of low mood, lack of meaning and lack of purpose.
There’s no pill that will cure that, but I suppose, from my point of view, people are still in that mindset of, ‘oh my gosh, I don’t know how I’m feeling or what’s going on for me, so I have to go to the only service that is available’ and that is the medical model of care.
As Martha mentioned earlier, the root cause is really something else and people can feel like they’re going mad and in those moments they don’t know what to do other than go to a service that is highlighted for mental health. But really, the way that I’m trained as a peer support worker is that mental health is a human response to life events and to life itself and the interior response to life events and there are no pills that can cure that.
I suppose for me, Mad in Ireland would very much be widening and I can see a change at Perspective in your three. People are beginning to see that there isn’t a pill that cures this stuff. I would hope that Mad in Ireland would open that up by saying that these are human issues, these are human responses to life events and there isn’t a pill that can cure it and that you have choice. If we really deescalate the situation, you have the answers within you to find the solution.
It’s the same as myself, I got locked into that kind of model and it didn’t serve me. It’s heartbreaking for me to see all the people who get locked in that sort of doctrine. For me, it took a long time to come off medications like Effexor and Lithium because they’re heavy-duty drugs. I feel there is a way forward and I’m not an anti-medication but I feel there is a way forward for people to have choices and alternatives and to be able to have a menu of stuff that’s out there because there are amazing people doing amazing work.
What works for me doesn’t work for somebody else and vice versa, but to have choice, that would be my hope and I suppose the mental health services in Ireland at the moment, there’s no menu. There’s only a one-stop shop really.
MacGabhann: I suppose for me when I think about Mad in Ireland and what it can do there are two things happening. There’s no doubt that there’s a very slow attempt by services through well-meaning people, through policy change, to try and change the status quo, but as Elaine said, there’s no menu. We’ve got an infrastructure that’s just not recovery-orientated. Part of the challenge for people who actually want that system to change is how can we do it within an unchangeable infrastructure?
Probably everybody here on the call is so used to knowing people and ways of working alternatively that it’s very easy to forget that the majority of people think there’s only one way and that’s the only choice to have. I keep having to remind myself of that. As Harry was pointing out earlier on, mainstream media sells that ‘no menu’ approach. There’s mental illness and we have a really strong bio-centric professional stance at the moment. It’s a resistance to an actual beginning of a paradigm shift, you can see it.
I know of good practices in services and I’ve been part of that movement with them in services, doing Open Dialogue, doing trauma-informed care work. One of the services we’re going to showcase at the launch, called 49 North Street, has turned what would traditionally be called a day hospital into a completely different kind of place for people to go. So there is this possibility because, unfortunately, probably 90% of people have to use statutory mental health services.
What I’m hoping is that Mad in Ireland can showcase the other story and the other paradigm that can work wherever. It’s not just a paradigm for the people who can afford it or for the people who live alternative lives. It’s a paradigm for professionals working in the services who can also say “Jesus, I could do that where I work in the community mental health team”.
I see something that is going to influence part of that cultural shift on the inside as much as on the outside. I see Mad in Ireland as a kind of a lens for a way out and a way of shifting that culture and showcasing good practice inside and outside of our services.
We’ve been pushing alternative, cutting-edge work, trying to do stuff and successfully in several areas through Critical Voices, for example, or Hearing Voices. Some of the radical courses and peer support is on everybody’s lips now. Back when Elaine did the course, it was some sort of ‘heebie-jeebie’ thing that people were talking about. So this is now a lens for that to be seen because it’s not being seen outside of the people that know about it. It just gives an opportunity, that’s my hope anyway.
Griffin: I suppose I’m focused on the mental health amendment bill that’s coming through in Ireland at the moment. There was hope that it would change and be in line with the UN-CRPD (Convention on the Rights of Persons with Disabilities) and it’s been put off until the autumn now.
There have been many presentations before the committee on mental health, there were conversations that they probably hadn’t heard before but there’s still a kind of nervousness around giving full rights to people with mental health issues in Ireland. I suppose that’s the backdrop for societal change that needs to be pushed on. There are some powerful people in Ireland working on it and I suppose maybe this can be a platform as well for them to let lay people know what the legislation says in Ireland about people with mental health issues. I think that’s important.
Moore: If we can turn to the site itself a little bit. I have to say that all of us at Mad in America are thrilled to see you get underway. We know from the other global affiliates that there are so many important roles for a site like yours to have in terms of sharing survivor stories and connecting people with experiences outside the kind of traditional system. I just wondered what your thoughts were on what kind of content Mad in Ireland is going to have, and what your plans are after the launch to develop it?
MacGaghann: I think the message is letting people know what it is you’re trying to do which is what we’re aiming for the launch with some samples of survivor stories, examples of good practice, stuff that’s globally relevant. There’s that section there of globally relevant stuff from Mad In America that will be just as relevant to Ireland, at least in our view.
For me, it’s about ‘build it and they will come’. We want to be strong about our submission guidelines. We have quite a good representative editing committee because we’re all connected to so many networks. We know that people will be screaming to get stuff up there, and it’ll probably be a challenge to hold it back, I think in one way.
For me, it’s to try and maintain our vision and our principles from the outset and to have a regular reflective process for ourselves so that we keep that critical edge. We keep to the notion of this as an alternative and showing an alternative to regular media. I’m also aware that when this is launched that there will be approaches from contemporary media to try and link into what’s happening. There will almost be an attempt by the standard media to take some of this content.
We just want to be very reflective and present after the launch to what the response might be. In our own lives, some of us will probably get some fallout as well and that’s fine. We’re all comfortable with that or at least comfortably accepting of it. That’s as far as I can think, to just hold true to the values and the launch will be an example.
Griffin: I think it’s timely as well because it’s been a while since we’ve had a kind of movement in Ireland. Podcasting and the internet are new ways of getting to people. I remember looking up forums in my day trying to gather information, whereas people are more used to going to podcasts so I think it will take off quite quickly. People are looking for answers and alternatives and difference and connecting in, so it’s very exciting.
I’m looking forward to seeing the Irish flavour coming out through the website on the podcast as well because it’s lovely to listen to Mad in UK and Mad in America to be able to hear all the different voices as well from around the country.
Brown: I suppose for me, in a cultural context, I think we as Irish people are really good at secrets and we’re really good at putting things into the cupboard and not saying anything about it. That would be a lot of our cultural background of mental health. That was the great side of my training as a peer support worker in 2011, that I could come out of the closet. When I met my peers, the first day I felt like I was coming home. I could voice what was happening for me. I think, for me, the content as a peer support worker is very much about normalising these experiences because, as a peer, I don’t see them as illnesses.
The people who come to Perspective and the people I have met on my journey are not ill, they’re having extraordinary experiences internally to life or to life events. People have voices and visions as well that are part of their makeup and who they are. It doesn’t always mean that they’re ill. Sometimes this can be an enhancement to life, I feel, and they make the world more colourful.
I’ve definitely met amazing people through my life and work as a peer support worker. I feel that the content should be normalising mental health. I hate to even call it mental health, so normalising being human. We’ve had three suicides here in the last month, so I want Mad in Ireland for those people who didn’t make it. I want it so much and I feel guilt every time somebody doesn’t make it. I want the content to be for the people who before crisis are feeling sort of ‘what’s wrong with me? Am I going mad? What am I experiencing? Who do I talk to? Where do I go?’
I want them to talk to people who, as Liam said, used to have mental health who’ve done the journey, who’ve done the road and who hear about other therapies and other things that are out there without it escalating and without it coming to a crisis point. I would hope that the content would be very much based around the evolvement of the person as being human rather than being ill and unwell.
Gijbels: It will be interesting to see how the site develops over time. I don’t think we have any idea at the moment. We’re talking about control in the sense we are in control, we do control what goes on and what doesn’t go on.
It will be interesting to see how the media responds to it or how we respond to the media and vice versa. What do we do to engage with the media after the launch? Do we wait for a while and see how things develop before we maybe approach the media and say, “Here we are take note.”
No doubt social media will be very important and we’ve talked about it in our recent meetings. But also what will the site hold, will it be a repository of information? Will we have particular specific themes that we want to focus on over a period of time? Martha referred to the new mental health bill and it might become a theme for a while just to focus on aspects of things that are happening in Ireland.
I’m thinking about all the different Mad in the World affiliates. They all have their own ways of working as well. They focus on different aspects, such as in the Netherlands, focusing very much on psychopharmacology. There are different affiliates who focus on different things. They share a lot of things but also have their own focus and, as Elaine just said, we have to try and sell the Irish one. Also conscious that we are of course representing the island of Ireland or the corners of the island and we hope certainly that we get people from the northern parts of Ireland on board as well in influencing and working on the site.
Moore: In terms of people listening to this, I don’t think people generally know how much work and effort goes into launching a site like this and how much of a labor of love it is. I’m really grateful to you all for everything you’re doing to pull this together.
Listeners can really help by publicising what Mad in Ireland is doing and its online presence. I think you said yourself that the nice thing about the affiliate sites is they can take really interesting international work and apply a local lens and make it meaningful for the people of Ireland who are desperately seeking an alternative to perhaps a very difficult situation they might find themselves in.
Certainly, I encourage listeners to visit the site and read the articles, promote the site on social media and share it with friends. That’s hugely important to the life and survivability of these sites, isn’t it?
Griffin: Yeah, I think it’s necessary as well if we want to push what’s coming down the line over the line. It really sets the tone for the policy and practice in mental health services as well as outside.
There’s been a few worrying developments in Ireland recently where NGOs are attending conferences that are supported by pharmaceuticals and people more leaning into the mental illness language rather than mental health because they are saying, “Well, some people who suffer, it’s different, there’s a small cohort over here who won’t recover and who won’t do well.” There’s a kind of division or a keeping and disabling a whole group of people based on old ideas.
Even when we have our policy or we draw up new policies, we don’t think ‘let’s bring in the latest scientific evidence for it’. It’s more like, ‘this is the structure we have, where do we go from here?’ There isn’t a reinventing at all. I suppose I’m particularly worried about young people in Ireland. I always think of my kids and them accessing services and what that would look like or what would happen if they needed support for their mental health. I will say, currently, and a lot of people who work in mental health services would say the same thing, they wouldn’t send relatives in. We see situations where young people are lactating because of the amount of drugs they’re on and there’s no clinical oversight happening in some areas.
I think if the legislation backdrop was strong with the UNCRPD and capacity legislation and support around decision-making, all of that would make a huge change in people being able to demand their rights. There’s no right to service in Ireland, that’s very lacking. It’s kind of, “oh, we don’t have money, it’s not in your area” so it’s a postcode lottery. A lot of that would change if the legislation was pushed forward, so I think it’s a good lens to look from.
MacGabhann: You reminded me there, and it comes up in a lot of global affiliate conversations, the need to also provide strong evidence. A much broader evidence than the pharmacological-chemical evidence for most of the bio-centric stuff but a broad evidence. So that the old paradigm gang don’t use the standard “Where is the evidence, where is the evidence, where is the evidence?”
We know there’s more evidence backing up alternatives than there is backing up the originals. But I’d like to make sure we keep that there so that when people are making arguments they have evidence at least as the old paradigm understands and our society understands to back up what others are saying and doing.
Brown: Just going back to the human rights issue for a minute. A human rights issue for me is confidentiality and the issue of having choice and for the person’s pain to be witnessed and acknowledged rather than to be observed. There are alternatives out there that that pain can be witnessed and acknowledged confidentially without going to part of a bigger team and for it to be observed.
From my pain and my peers’ pain to be observed, I can’t even put a word to it. I requested my files from the psychiatric services and it was ‘observed’ that I was having a relationship with another patient, which was not happening. In all of that time that I was there, it was never asked, “Well, what do you think, how are you?” I was told how I was and that’s a human rights issue as far as I’m concerned.
I suppose the other thing as well is that I would be asked to go into schools and what I witnessed was that children are told about illnesses. They’re given the names like depression, schizophrenia and bipolar. That’s not what I want for my child, my friend’s kids or any child.
Moore: It’s conditioning, isn’t it?
Brown: It’s conditioning. They’re already put into this mindset of illness and if you get ill this is what you do and this is where you go. I want something different for people and that they hear that human distress is normal and for it to be acknowledged and witnessed in confidential environments. This is part of the overcoming and healing and recovery journey of it all.
I think people have a right to that information and I don’t want us to be us against them. I would like more of an amalgamation or an awakening if you like. For people to see that this is not working so we need to look at a more authentic and honest picture of the reality of what it’s like to be human in 2022. Not from an illness perspective but from a loving and humanitarian and dignified perspective.
Moore: Thank you all so much for taking the time to join me today and to share really exciting details about Mad in Ireland. There is such an appetite for all that you’re going to do and so many people will feel empowered and touched and reached and connected with it. We know from other affiliate sites that while it’s a lot of work, it’s hugely valuable and beneficial. It’s been fantastic to talk to you all about it today.