‘I was a rebel without a cause before my breakdown… I saw psychology as an avenue to change things’

Rufus May had a breakdown at 18 years of age. He was diagnosed with schizophrenia, which resulted in three hospital admissions. Dr May, now a Clinical Psychologist and Mental Health Trainer, tells Assistant Psychologist Fauzia Khan how his experiences in and out of the mental health system spurred him to train as a psychologist.

Can you tell me a bit about yourself and what brought you into the field of psychology?

When I was 18, I had a breakdown. It was a powerful experience and I ended up being hospitalised several times. Through my journey in the mental health system, I developed an interest in psychology. Being a patient who was seen as ‘psychotic’, I felt as though my experiences weren’t being listened to and I didn’t think patients were being treated very well. When I was in hospital, I was treated with medication as I had strange beliefs that people didn’t understand. I was a bit lost in the inner world that I had retreated into, but there was no sense of people trying to be curious with me or trying to empathise, and I found that more challenging than the experiences I was going through. In ward reviews, I was treated almost as an object of curiosity – but this was not warm and open-minded curiosity, more as though I was a kind of specimen, which I found quite alienating.

I found the medications I was on difficult to endure as they had a lot of side effects. I came from a more privileged background than most of the people I was in hospital with – for example, I went to a fee-paying school, and so I think I had a bit more confidence to challenge how I was being treated, and to ask for different medication eventually. I saw that fellow patients perhaps didn’t have that confidence. I was struck how you lost status and rights if you were seen as mentally ill – that there was a kind of apartheid going on. In a way I was a rebel without a cause before I had my breakdown and after my breakdown, I thought there was a real injustice going on and that I could do something about it. I saw psychology as an avenue for that.

How has your lived experience shaped and informed your practice as a clinical psychologist?

I’m not a fan of the term ‘lived experience’. The term has become quite institutionalised and I’m not sure what it means because we all have lived experience. I have personal experience of using mental health services and of states that were judged to be psychotic by society. The term is a bit vague and some people might feel on either the inside or outside of it. But I guess that leads into your question, because one of the things that has influenced me from my own experiences is the power of language and how it can really shape and influence how we see things.

When I was diagnosed with ‘schizophrenia’ at 18, I noticed how that label shaped how everyone viewed me and when I said I didn’t want to take medication for a long time, people said I lacked insight. The concept of schizophrenia was so powerful that it vetoed my subjective experience and hopes and dreams. So, I’m very conscious of how we use language. I don’t think we should be policing language though, but I think we should be questioning it and looking at different ways to frame things. I actually found it helpful for people to use terms like ‘mad’. Someone once said to me ‘you’ve got to be mad to be sane’ and I felt really included. Whereas when I was told I was mentally ill, I felt like there was this barrier put up, so I tend to avoid using polarising concepts like mental illness. 

I’m also interested in power and how we can share it more. We live in a very hierarchical society and in academia and mental health these hierarchies are very strong – people aren’t treated as equals, which can be counter-productive. I’m always thinking of how to bring in more partnership and collaboration with clients, whether that’s involving someone from the beginning in their hospital mental health ward review, really giving them choice about who is in that review, or if someone is going to sit in a session with me. I look at my own practice in terms of how I can improve in being honouring and respectful. Everyone has expertise and wisdom, and I think that’s important to acknowledge.

I have been involved with a lot of hearing voices groups, where there’s this idea that there’s no right way to see the world. So I think we need to be very humble about our own realities: if someone has a different belief to us then being gentle around how we might explore that, or if we want to suggest an alternative way of seeing things being very respectful about how we do that.

There are spiritual, psychological (often competing!), biological and social perspectives; they all open up some possibilities and close down others. I know from my own experience that when I sometimes seemed quite ‘mad’ in hospital, some of that was quite spiritual, and empowering for me, so to just see it as a mental health problem wouldn’t completely do it justice. I have different ways of understanding my own experiences, so it’s important that I respect other people’s different understandings too. With that, I think it’s important to think critically and its okay to disagree. In fact, I think a healthy environment in mental health settings is one where a team can respectfully challenge and disagree with each other.

What kind of challenges have you experienced as a psychologist with ‘lived experience’?

I moved away from a team which didn’t seem very comfortable about my experiences, but I do sort of sympathise with them because I kept quiet about it as I didn’t know whether I would be discriminated against or not. It was only when I qualified that I told the course about it. In my first job I waited nearly a year before I started to speak up about my experiences and I did that quite dramatically – I’d written a paper about how my own experiences of mental health and recovery had influenced how I worked with others and I put that paper in everyone’s pigeonhole, so I didn’t have to tell everyone over and over again. At one point, I was talking openly about my experiences at a psychotherapy project, where there were service users and professionals and some professionals weren’t comfortable with that and brought it to supervision. I explained that I saw it as something political and was thus open about this breakdown and discriminative thinking. I think this discomfort exists because traditionally therapists are expected to be boundaried and keep their personal experiences to their personal therapy. I then left that team and went to work in Bradford where there seemed to be a lot more progressive things happening. They had service user consultants who shaped the philosophy of the team, and I was attracted to work with two critical psychiatrists who were based there.

However, when I wrote a book about my own experience and how it influences my practice, I found it difficult to find a publisher – I do wonder whether that’s society not being ready for the idea that you could have some wisdom and have been ‘mad’. It’s quite challenging still. Even though in some ways I may be deemed as being successful, a lot of people that I qualified with have higher paid jobs than me, so I think there’s a bit of a glass ceiling for me. But I don’t know whether that could just be due to my outspokenness rather than my ‘lived experience’ that I reflect on.

Historically there has been a lot of discrimination against professionals with ‘lived experience’ of mental health difficulties. Do you think that there is still discrimination around this, and if so, why do you think that is?

I think culturally since the Enlightenment we have been haunted by the idea of the ‘rational man’ who has a unitary consciousness – is objective and able to rationally problem solve. Psychology is influenced by this Enlightenment dream, which is quite individualistic in nature. Anyone that is opposite to this idea of rationality if they’re for example, highly distressed or suicidal; there isn’t space for it in this dominant narrative. And so, if I’m reflecting on how my experience of being in the mental health system has helped me become a better practitioner that is deeply challenging to this model. I prefer a model where we’re all much more complex than that. Rationality is useful but it is also useful to be vulnerable, creative, spiritual and contemplative – to be all these different mind states – they all have value. This being said, being ‘mad’ is still highly undesirable and the media probably keeps that going by constructing people as being dangerous, potentially immoral and unpredictable. 

Women were often also discriminated against traditionally in the mental health system, so I think there’s a lot of judgement towards gender. I think that it is an interesting time though as more people are talking about mental health, predominantly about depression and anxiety. There is still a lot of taboo about more extreme states, but in the last 30 years people have been telling their stories about extreme states a lot more and that’s a good thing. Furthermore, there is an interest in the mental health system to reduce restrictive practices, which might be a bit tokenistic but it is a start. In sum, I do see a lot of discrimination, but also some hope there too!

What do you think needs to change?

There needs to be a re-evaluation of the value of personal experience of extreme states of mind. At times we can learn a lot from the contents of those extreme states: it can tell us a lot about what a client and their family need to heal from. My dream would be that we have a sort of recycling approach to mental health. Rather than trying to get rid of depression or voices, we instead try and understand their purpose and meaning and learn from them about what we need to heal from as a community. 

You use a lot of holistic and alternative approaches in working with individuals with mental health difficulties; can you tell me a bit more about that?

Holistic approaches work pro-actively with the difficulties rather than against them. For instance, in my 1:1 work and in the hearing voices groups that I facilitate, I work with people who hear voices to try and form an alliance with their voices; helping the person to understand that the voices might be suffering and I talk with people’s voices, so I ask them to ask their voices questions and they report back what their voices are saying. I encourage them to carry on this more constructive way of relating to their voices. This approach is known as voice dialogue work. Traditionally however, psychiatry might try to silence the voices with medication, and cognitive-behavioural practitioners might try and encourage people to ignore the voices. This approach is more about taking back control, learning from the voices and helping people work collaboratively with them. 

I also like using things like boxing. A lot of people have repressed anger and it might be that they’re either punching walls on the ward or harming themselves, so giving them a way to let it out constructively can be beneficial. Sometimes I might also teach them martial arts ideas. People seem to get a lot out of that and it can reduce anger on the wards, so it has been very welcomed where I work. It is helpful to balance it with other things, like mindfulness or anger management ideas. If someone is angry, rather than trying to medicate them or put them in solitary confinement with low stimulation, you can help them dance or box it out instead.

Are there any current or future projects that you’re working on?

My team, partly through the influence of the Black Lives Matter movement, has become really interested in the under-representation of Black and Asian people in the clinical psychology profession, so we have been looking at ways that we can work towards increasing representation and becoming more inclusive. We are developing a website, which will be called www.letsfacechange.com; in a nutshell, this will look at how we can better understand and approach racism in mental health services and in clinical psychology.  

Regionally we have also had some funding come through for mentoring schemes as that has been shown to be beneficial, and we are looking at putting on an event around racism and psychology and how we can become better practitioners around promoting inclusion and respect for diversity. This has been an interest of mine for a while because we do see more black people at the harsher end of the system and I want to do something about that, so it’s been nice to be joined by others passionate about it too, as it can be really exhausting campaigning for something on your own!

Aside from that, I am working with others on building an evidence base around using boxing as a way to de-escalate and using boxing exercises therapeutically.

What advice would you give to other professionals about working with professionals with lived experience of mental health difficulties?

I would like all psychologists to be more comfortable talking about their own vulnerability in contained ways. If you don’t talk about it then when you do, it’s going to be difficult. I think it’s really important whether it’s psychologists or other health professionals, that we learn to talk about what is going on for us, because if you’re in touch with how you’re feeling and comfortable being open, then people tend to gravitate towards you if they need support. 

I also think that at times there can be confusion between competence and vulnerability, with vulnerability being equated with incompetence. Showing vulnerability (in a balanced way) is actually a healthy thing and does not mean you’re not a good professional. I really value those moments when people are able to share their vulnerability because the great thing is that it helps us connect with each other. So, I would say create environments to model ways of being authentic to what’s going on for you and that will help other people feel safe. Be the change you want to see!

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