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Podcast: António Ferreira

25 April 2023

Thea Joshi is joined by award-winning mental health activist and anti-racism campaigner António Ferreira. From providing guidance for an Eastenders storyline about a young Black man with schizophrenia, to his campaign to end tokenism in the charity sector, António is a force of nature in using his own lived experience to drive real change in mental health. They discuss António’s journey, how his experience of peer support during his time on an inpatient ward stoked a fire in him to study psychology and work to improve things for people living with a mental illness. António shares what he’s learned from his campaign around tokenism in mental health charities and what meaningful participation would really look like. He also speaks about a new campaign he’s launching about improving the way the police respond to people experiencing a mental health crisis.

Listen to the episode on Spotify or Apple PodcastsThe full transcript is available below

Show notes

Music by scottholmesmusic.com

Transcript

Alethea Joshi (AJ): Hello and welcome to Centre for Mental Health Podcast. I’m Thea Joshi and each episode I speak to people with experience of mental health difficulties, someone working in a specific area, or a member of our team about advancing mental health equality. Today I sat down with António Ferreira, the award winning mental health activist and anti-racism campaigner to hear about the experiences that brought him into campaigning and activism, from advising EastEnders on a mental health storyline and speaking to Prince William, to campaigning against tokenism in mental health charities. António is so driven to use his own experience to make a difference. And his determination and passion is really contagious. Hope you enjoy this as much as I did.

AJ: Welcome, António, to our Centre for Mental Health podcast, it is a joy to have you here with us.

António Ferreira (AF): Thank you for having me. I’m looking forward to the conversation.

AJ: Ah, amazing. I mean, you’ve been an amazing friend to the Centre. And I know that our paths have crossed again and again. So you’ve been involved in our Young Changemakers project and I know last year, you worked with us as a policy intern, been involved in chairing events, it goes on and on. So I’m just so delighted to actually get you on the podcast today and actually have a proper conversation with you. Thank you. 

AF: Yeah, the feeling is mutual. As you pointed out, I’m a very big supporter of the Centre. So happy to be here, happy to be speaking to you.

AJ: Incredible. So obviously, you’re known as an award-winning mental health activist and campaigner. You’ve done work in anti-racism. So I wanted to just take us back, if you’re happy to do this, to the beginning of your story, and would you be happy to tell us a little bit about your own experience of mental health difficulties?

AF: Yeah, sure. So for me, it started as a teenager, going through high school, close to my GCSEs, I, you know, grew up putting a lot of pressure and expectation on myself. And as some would put unhealthy pressure and expectation, which ultimately came from my peers, teachers and families. Great expectation of me, I guess my expectation, I’d say would be the wrong word, but their ambition for me because, you know, I was what people call a model student, I was completing coursework and the homework on time. I was copying out books to improve my handwriting because my teacher had a handwriting competition. You know, I was in top sets for most of my classes. So there was a lot of, I guess, yeah, you know, ambition put on me to do well and succeed.

But unfortunately, that got channelled into this unhealthy expectation and pressure that I put on myself to have to live up to those ambitions people had of me. So ultimately, as I was going through GCSEs, and going on to college, that pressure and expectation I put on myself from people’s ambition became black or white thinking of I have to do it, otherwise I’m going to be nothing right? I won’t be accepted into society. And that cause physical symptoms as well, because of the stress I was putting myself under to achieve. You know, I was suffering from fits, and then my behaviour changed and I think my behaviour changing was most apparent to my teacher and my family. And one day I noticed that I’d become quite confrontational, and gotten my first detention for gross defiance, they wondered if something was up, right? And I mean, there were plenty of times in between to really see what was going on, but I felt, now when I look back at it, I was very misunderstood, because, you know, my football club would brush off my behaviour to anger issues, you know, maybe he’s just suffering with some anger issues. So they never took it as anything mental health related.

My teachers, once I had been referred to Child and Adolescent Mental Health Services, they would receive questionnaires on my behaviour in school to try to test for, so that the service, can try to tell them what was going on. And I remember one of my teachers saying to me, oh, you know, I’ve got this questionnaire, but I’m going to fill it out as perfect, so you don’t get involved in that system sort of thing, you know, which at the time seemed, you know, it seemed as he was trying to help me, but this is why I said misunderstood because no one saw the mental health aspect of it and personally, coming from African culture, there was no discussion of it either. So, you know, me trying to illustrate it was difficult and other people trying to pinpoint it was difficult. So considering all of that going on, it came to a point where, you know, I was struggling, emotionally, physically, and so on and so forth, and what actually happened was, because of those physical symptoms I had, I was referred to a neurologist but at the same time, I was on the Child and Adolescent Mental Health Services. And unfortunately, there was a miscommunication between – well a miscommunication or lack of communication because my neurologist had prescribed me this antiepileptic medication to help with physical symptoms. However, that antiepileptic medication also had a side effect for enhancing mental health-related issues. And so that’s why I say a miscommunication or lack of communication between my psychiatrist and neurologist, because ultimately, that medication did enhance my suicidal ideations, I wasn’t able to manage or cope, and I just thought the only solution was to attempt to take my own life. And in that process, you know, that’s where I was put into this unspoken territory, as I said, of mental health and now having to open up on my vulnerabilities and weaknesses.

To cut a long story short that ended up in me going into a psychiatric unit from that mental health crisis I experienced. But I think going into that psychiatric unit is probably what changed my life the most, a lot of people asked me, how does a situation like that (being sectioned) make you, rather than break you because, you know, I think, for people, it’s more common that, that situation breaks them. And I just, for me, it was accepting my mental illness first. And I came to accept that through peer support, so learning of other people’s experiences, and then it was about, I guess, just feeling bad for the fact that I felt so lonely in that diagnosis as a young Black man and that everyone else, every other patient, seemed to be quite alone as well. And to me, it was like, you know, probably, again, an element of unhealthy pressure and expectation, it was me wanting to get out of there to do better, you know, to improve services for young people in the future and to really give back to those other patients who gave me that peer support, you know, so I came out the psychiatric unit quite determined, of course, still in a sort of bumpy road trying to come back from that situation with my mental illness. But I knew one thing for sure is I wanted to come out study psychology, because in order to change something, you’ve got to learn more about it, right? You can’t go into something not knowing anything about it. So I wanted to come out and learn about psychology, which is what I’ve done, but this time, my own ambition not the ambition of others. And so yeah, you know, I went back to college, got my UCAS points, went to university, had a little bumpy road again, at university, but never gave up. And here I am today, studying psychology with Cognitive Neuroscience at the University of Essex. There’s obviously a lot in between that story that I’ve missed out on, you know, keep your ears open for you to pick out any questions.

AJ: I’ve just got to say, thank you so much for sharing that, of your own experience, of your own vulnerability. I don’t want to be cliche, but it is so encouraging and so inspiring to hear, it always is to hear about someone whose face like real struggles with their mental health. And, as you say, your experience on the inpatient ward, and how that kind of changed your life and the things that you acknowledged were not good there in terms of loneliness and isolation. And it’s just so encouraging to hear your story. And I’m really excited about all that you’re doing and are preparing to do the future. It’s really uplifting to hear. You mentioned about your stay in an inpatient unit helping and I was interested to know what are the things that you feel really helped you to come out the other side of that episode or previous struggles?

AF: Yeah, sure. I mean, I think I’ve always been quite a very analytical person, you know, I have a strong sense of self-awareness. So when I was in a psychiatric unit, it wasn’t from the beginning, I got there, I knew this is what I was going to do, this was what was going to happen. It took a lot of errors and mistakes, you know, I first went in there quite – well, actually, I first went in there expecting luxury. I was. Whenever you think of a hospital, I just think sleeping on a bed, being looked after and you know that. But it’s completely different to that, but I won’t go into too much detail, that’s a whole different story of what it’s like in there but what I’m trying to get at is there was different stages to it. Right? And the beginning was this confusion and then it became this frustrated stage to things because you were like, you know, you finally realise how limited you are being on section and what being on section actually means. But then came this point where it was like, Well, I’m here now. And I’ve understood all, you know, all the aspects of what’s going on. What is the solution? Right? I always tend to not focus too much on a problem and find out what the solution is, right? It’s very simple, you know, you, for example, you’re hanging out with friends or family, right? And I don’t know, you’ve taken the wrong turn, or you dropped something, or whatever the problem is. A lot of people will tend to do is tell you what’s gone wrong. But I will be the person that says, okay, well, we all clearly recognise a problem, let’s talk about the solution, you know, what can we do about it? Because there’s no point hanging on to the problem and I believe that’s what a lot of people unfortunately do, they hang on to the problem, and then that makes it a struggle for them to come into recovery.

So fortunately, for me, you know, again, I recognise a problem, and I accepted the problem. And for me, it was what is that solution? And so, in speaking to other patients, I learned that although our experiences are very subjective, we still had objective parts to our stories, you know, we all felt depressed at a certain time, we all felt anxiety at a certain time, you know, we all doubted ourselves at a certain time. And with our people’s real experiences, you start to learn, oh, actually, this is more than just boys being boys or, you know, teenagers being teenagers, there actually is something going on here that I was completely unaware of, because of my upbringing, right? And so, yeah, you know, that conversation with them is really what helped, and I believe as well, they really saw that you know, almost like a light bulb, I didn’t have a light bulb that was off that needed switching, I had a light bulb that was simply turned off and just needed turning back on again. And they were able to do that, you know, they would, at times put aside their own struggles to support me and on the way out, they would always tell me, we don’t want to see you back in here again, like, you’ve got so much to you, we want to see you change. And, you know, I took that upon myself.

AJ: Yeah, I’m glad you touched on the peer support element, because I think peer support is a really interesting one. We’ve done some research on it, the Centre, and I can link to that and in different contexts. And obviously, it’s grown hugely, and in the past decades, say in NHS mental health services as a kind of formal role. But equally, just as people peer support, you know, informal peer support, I think we’re like oh, yeah, it’s good, it’s great. You know, but I think similarly, when we’re struggling, at least for me, I think you think, well, no one’s going to understand because no one gets this, you know, and then when you have an experience where peer support is good, and you talk to people, and you go, Oh, you understand this too. Like, there’s something really profound in that, I think that is incredibly powerful for recovery in, in my experience of just going, oh, you get this in a way that no one else can unless you’ve literally lived through it yourself and experienced it in your brain. So yeah, I wholeheartedly agree with that.

AF: I believe a lot of isolation and loneliness, particularly in the world of mental health comes from the anxiety towards the conversation, you know, before going to a psychiatric unit, I never had a conversation about my mental illness or my struggles, but being in that unit forced me to have that conversation, fortunately. You know, I believe that’s also why I was able to learn how to illustrate what was going on for me from others’ experiences. So yeah, 100%. Yeah.

AJ: And so, I mean, you touched on it there, but I’m just interested to know more about when did you start moving into the world of mental health activism? What kind of things have you been a part of? Talk me through some of it. I know you do so much, and I’d love to hear more.

AF: Yeah, how much time have we got? I actually got into volunteering quite accidentally. So what happened was when I came out of the psychiatric unit, I said, you know, I was determined to learn about psychology to change psychology. I started at the University of Hull studying psychology with a fast-track Doctorate. And when I was there, I was part of the well-being team and so forth and had quite a lot of support there. Now, I remember a lecturer saying, the world of psychology is quite competitive, you need to go out and get extra experience because you can’t just rely on your degree to get you into that field. So, you know, being a cooperative and obedient student, I listened to my lecturer. And I went off you know, signed up to a local Mind, which at the time was Mind in Hull and East Yorkshire. So yeah, I signed up. But you know, I never really signed up to do anything, I just signed up to put it on paper, put it on my CV, you know, that kind of thing. So yeah, I done that. But for anyone listening, if you signed up to be a volunteer, you are going to be asked to do volunteer stuff. So, inevitably, I was asked to give a talk to my University about my mental health experience. Again, in the context, I was never interested in doing anything. So of course, I said, No, I just wanted to put my name on paper, that was it. But again, being in a psychiatric unit, the main thing I learned as a human is to always try, and then the next best thing to do is to try again. And then the third thing is to try again, you know, and after that, if you’ve done all of that, then don’t sweat it, you’ve tried your best, just keep it moving sort of thing. So having, at the same time experienced a relapse, I transferred to University of Essex to be closer to London, where my original mental services were from, because they were my carers, so and so forth. So in doing that, coming back to transferring to University of Essex I said to myself, I’m not gonna give up at that first hurdle of volunteering, let me just try again, right? So at this time, I signed up, I believe, to the national Mind, and I, you know, they’ve, again, as a volunteer asked me to do something. So this time, I said, Yeah, and it was to give a talk to Mind staff induction day. And I done it, you know, I went to this talk all suited and booted, I thought it was going to be so formal. I was really excited, my first time telling my story, I was sweating buckets too. But yeah, you know, that experience really became the start of the snowball, because after telling my story, you know, the feedback I received was your story is so powerful, it could really help a lot of people, you should really carry on with this. Right? And then that was that light bulb, the start of the snowball. I thought, Yeah, why not? I went on to be a major volunteer, and I signed up to I say, seven or eight other mental health charities, I’ve never actually attempted to name all of them, because I end up forgetting some, you know, but mainstream charities, mainstream mental charities and grassroots mental health charities, I signed up to volunteer for. I took part in my first media opportunity with Time To Change, which was talking about the most the, the more stigmatised mental illnesses, I think the campaign was called See The Bigger Picture.

I love that I found my passion for being in media and working in front of a camera, and just, you know, the whole idea of raising awareness for mental health, particularly within racialised communities. I believe from there I just kept taking on, I kept doing opportunities and kept really thriving to get my story out there. And as I always mention, particularly from a racialised community point of view. And I can’t remember in between how much I’d done or what I’d done, it was a lot. But I know the next big thing I’d done after that was the EastEnders opportunity with Mind. That was amazing, that came from being part of Mind’s Media Department, they have this department that supports stories and soaps with accurately portraying mental illness within a storyline and so, EastEnders reached out to Mind because they wanted a storyline on a young Black man with schizophrenia and they wanted to do it, they wanted to portray accurately and sensitively, without sensationalising. So they offered me as a case study. And fortunately, firstly, I got to meet with the directors, writers, producers, and actors to tell them my story. And I got invited on set, which was a really, really interesting experience and interesting experience because I was touching things that weren’t real, they’re actually part of the set and I thought they were real. And it was really interesting but I got to also meet some more of the actors and just consult them on the day on what it really means or what it looks like to be a young Black man with schizophrenia.

I remember there was one part of the scene where they had the actor Stevie who plays Isaac in EastEnders, holding his head when he was hearing voices. And the director came to me and he said, you know, what do you think of that? And I said, that is one of those misconstrued concepts, when we put our hands on our heads, it’s nothing like that. And he said, okay, you know, what we’re scrapping all of that. He just took it out and there were things that we’re doing as well, to really make it realistic, like, using an earpiece with the actors whilst talking to make it really seem like they were being disturbed by voices. So all in all, it was a great experience and as I said, an interesting experience, it was a really big opportunity for me, and that’s probably what started my independency for activism. Yeah. And then, you know, carried on, done a campaign. I’m sure we’ll get into more details about this, but done a national campaign around eradicating tokenism from the Mental Health charity space, that is a great campaign. And then, you know, more recently meeting the Prince and Princess of Wales on World Mental Health Day and being interviewed by them on my mental health journey to where we are now.

AJ: Amazing. That’s so cool. I remember one day I was watching BBC Breakfast, and I was like, oh, that’s António on the big red sofa. That’s so exciting. So you’ve got a fan there in me. But no, genuinely, it’s really exciting. And I’m, I’m really encouraged to hear how you’re using your story to really make an impact across things like the media, and in having major conversations with the future King. It’s very, very exciting. So you touch there on the campaign you were doing around tokenism in mental health charities. And I’d love to hear a bit more about that. And also then by extension, what does it mean to move away from tokenism to meaningful representation and involvement of underrepresented communities?

AF: I think it starts off with defining what meaningful and genuine action, and participation means, I think, you know, each organisation will have their own understanding of meaningful and genuine participation. And what I learned through my tokenism campaign is that not every tokenistic approach is done intentionally. Sometimes it is unintentional. But however, having that lack of awareness to it is also contributing to it. Right? And so it wasn’t always about changing people’s approach, it was also making people aware of their approach. Right. And that was that was quite important. Now, if you ask me what does meaningful and genuine mean within context, I probably couldn’t answer that.

Because I believe as a whole, there will be core beliefs, but for every organisation, they will have their own method tailored to their organisation, which won’t be the same for all right. When people refer to me as an expert by experience, it’s important to say that I’m an expert, in my own experience, right, I was diagnosed with a mental illness, and I do have insight into my diagnosis. But that doesn’t mean I’m an expert in everyone within that diagnosis, right. And so having me involved is great for my perspective, to hear my perspective and to offer my perspective, but one isn’t enough. And that sometimes comes into that tokenistic approach, you know, where you feel okay, we’ve already got António in this, that’s it, we don’t need anything more, that’s enough to tick the box, which isn’t necessarily the case. And then you have situations where some organisations will feel okay, well, even if our members are predominantly white, let’s create a group where more Black people can be together, that isn’t also, genuine or meaningful. I see the intention behind it. However, you’re actually oppressing us, again, you’re putting us in a group of people we’re already familiar with, we already think alike, so we don’t really have to be teaching each other anything. We need to be mixed within a group, within people of power to really create change, influence and awareness. Right. As I said, you know, when I started off, I started off with raising awareness. Then I moved on to campaigning and really getting into policy and making changes because I realised having an awareness alone is not enough, that doesn’t really do much, change needs to be informative and transformative, not just one or the other. Right? It needs to be the two together and then we need to look at coproduction and how coproduction is also utilised, because there’s a thin, there’s a small degree of using coproduction as a buzzword. We’re going to coproduce together. But actually, when you get into it, you’re not really coproducing right? And then also, participation. What does that mean? We put a price on participation and automatically assume that’s enough, we value your participation, so we’ll put a price on it. That isn’t genuine, so there’s meaningful and genuine that isn’t always genuine. I know it’s a good attempt. And this is why I say not all approach is intentionally tokenistic. Sometimes it’s unintentional. Now the big thing I had recently in all of this, was that culture is actually an illusion, or culture is blinding. And I sat down, I thought about that. And I thought, how could culture be an illusion? How could it be blinding? And I thought about everything else and I thought about how compassion can be blinding, how insight can be blinding, everything we’ve spoken on, in terms of attempts to involve genuine and meaningful participation from paying a fee to making groups and so forth, have been people’s approaches towards being non-tokenistic. However, that has also come from the culture being blinding to them realising that actually what we’re trying to do here isn’t helpful, isn’t beneficial, but we’re so engrossed in culture, culture, culture and trying to do it in a non-tokenistic way that we’re forgetting the first principle thing, which is education, awareness, and how do we get that education and awareness by genuinely and meaningfully involving those with lived experience.

So if you’re able to start off from the simple base of learning, and educating yourself on what that means, what genuine and meaningful means to your organisation and to the people you involve, then you can move on towards the right steps okay, well, how do we value that participation? How do we group that participation? And I also believe, I guess, you know, when he says, one size doesn’t fit all, the reason we think of one size doesn’t fit all is also because of culture. I just found a quote – so what it was was, if we look at evidence-based design versus experience-based design, ultimately, evidence-based design should include experience. But when we focus too much on evidence-based design, we stray away from experience-based design, experience-based design will come from genuine, meaningful coproduction because you use people with lived experience to influence your current practices and approaches. Now, the danger of being too evidence-based, is that we enter this fallacy of one size fits all. Whereas if we combine experience-based design, we move away from that and become more considerate towards diversity, and find that there isn’t a line of best fit for all of this, because everyone’s culture and diversity varies. But again, that comes into understanding and gaining that education awareness, but also not allowing culture to become so blinding that you forget everything else that matters in between. 

AJ: That was really helpful António, thank you. There’s so much I want to come back on. I thought it was interesting because we’ve done some work recently on the involvement of people with lived experience within mental health services. So it made me start thinking about that. But it’s a really interesting one, isn’t it? Because as you said, you’re the expert of your experience and not all experiences. And so often the involvement of lived experience, whether it’s specifically just more generally in mental health, or specifically looking at underrepresented groups can feel really tokenistic. Because it’s like, as you said, it’s this kind of tick box. Oh, have we got someone’s lived experience? Yes? Check. And we’re all susceptible to that. And we’re all guilty of it. To be honest, I think if you work in mental health, in any way, because it can be too easy to think formulaically. But the reality is that so many of us who work in mental health as well also have lived experience. We kind of put this weird divide there between people who have professional experience and people who have lived experience, which is arguably like a false divide anyway.

But yeah, as you say, I think it’s way too easy to fall into tokenism and saying, Well, yes, that person will speak for people with lived experience. And as I know, as I’m sure you know, we can’t because everyone is different. And it’s kind of like, you’ll say, well, I found this really helpful and then someone else will be like, well, I didn’t and you think, okay yeah, I’m only speaking from my own experience. I also wanted to pick up what you were saying around that kind of evidence-based or experience based. And I think that’s really interesting for us as a research charity as part of our stuff being research, as well as policy and campaigns. Because obviously, we want to make sure that whatever we’re campaigning and calling for is based on the evidence, it’s what’s going to work.

But as you say, the experience base within that has to be a fundamental part of that, it fundamentally goes hand in hand and I think that’s what we’ve been seeking to do through, during coproduction and peer research into our research, into our evaluations, you know, how does this feel on the ground, rather than just like using research methods that can maybe have more colonial roots and can feel more imposing and even oppressive, rather than acknowledging and embracing lived experience as part of that. We were talking a lot about your campaigns and your activism and part of that, I know, you’ve got a new campaign that you are planning to launch and I’d really love to hear a bit more about that.

AF: Yeah, my next campaign, without giving too many revealing details is based on advancing racial justice within mental health, but it’s particularly aimed at improving outcomes between the police and those experiencing a mental health crisis. We know and you probably know as well from research that a lot of people don’t feel the police should be involved in dealing with mental health crisis, and, don’t feel confident in the police with dealing with mental crisis. And so, my campaign isn’t to point the finger at the police and say, you know, this is what you’re doing wrong, or, this is, whatever, whatever. It’s more saying, actually, let me be the first person to step up as a young Black man with lived experience and offer you my support. A lot of people talk about reaching out to those who’ve lived experience. Well, I’m coming to you and I hope that the organisations that I’m aiming the campaign at will open the doors to it.

But yes, as I said, it’s aimed at improving those outcomes by imperatively seeking the input of those with lived experience to change, to improve current practices, to sharpen legislation and guidance towards policing within a mental health crisis, but not just putting more pressure on individual police forces, but also giving them the confidence and compassion to accurately and sensitively deal with a mental health crisis. There’s always two sides to a story, and I don’t believe I should only look at it from my side, which is the side of someone with lived experience. I’m prone to mental health crisis, it should also include the side of the police who might feel fearful, might not feel confident to deal with mental health crisis and that might lead to incorrect decisions or insensitive decision. So I don’t believe an officer wakes up in the morning goes to work and decides he’s going to be awful to people with mental ill health purposely, I would like to not believe that anyway. And so it’s about taking the pressure off the police so that they feel confident and have the right compassion to deal with mental health crisis accurately, by having the input of someone like myself with lived experience, but also developing a solution for those with lived experience going through a mental crisis to feel confident in the police to deal with such situations. And I guess breaking the tension between the two communities, building the relationship again, and the trust, but ultimately, by emphasising the need for lived experience input and then by being the first person to say, here’s my hand, take it and let’s walk this road together.

AJ: That’s so amazing and I can’t wait to hear more. Obviously, we will be right behind you on that because, you know, it’s clear that really fundamental change is necessary, but that has to happen at every level. And as you say, equipping people in the police with the tools to kind of understand and respond with compassion is critical to that. And obviously, I’ll put in the shownotes links to António’s various social channels. And yeah, please do get behind that amazing work. António, you continue to astound me with just the sheer amount of stuff you’re doing as well as the brilliance of it. So I’m grateful to you for taking the time today to speak to us and yeah, it’s just been wonderful to hear more about it. I know we could do another hours conversation, but it’s just been great to have a chat with you and hear more about your journey to this point. And so thank you.

AF: No, thank you for having me. And as always, I enjoy being part of any work with the Centre. And as you can tell, I enjoy speaking so it’s been a really great conversation. I’ve really enjoyed and as you said, look out for the a campaign, support it how you can and I’m sure from here onwards there will be big changes coming.

AJ: Awesome. Thanks so much!

AF: Thank you.

AJ: Thanks for tuning in. I hope listening to our conversation has inspired you in the movement for mental health equality. We rely on support to fight for change, so please give what you can at Centre for Mental Health donation page. See you next time.

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