"Taking A Stand" Fergal Keane interview with Rufus May.
Produced by Jane Bersford 6/2/01 (winner of 2 mental health media awards)
To be a clinical psychologist who takes a stand against the wide-spread use of medication in treating mental illness isn’t perhaps all that unusual these days, but it is unusual to find a clinical psychologist who takes that stand as a result of their own experience. Rufus May was eighteen years old when a psychiatrist told him he was a paranoid schizophrenic and would have to take medication for the rest of his life. There followed seven months in a mental hospital and the traumatic experience of being forcibly administered drugs. The man labelled “paranoid schizophrenic” sits in front of me now as someone who hasn’t taken any medication in thirteen years and who works with the mentally ill as a psychologist. Rufus May, can I just start by asking you, was there a moment when you were in the mental hospital where you thought to yourself, “when I get out I’m going to change things?”
I think there was a specific moment when I went to a friend’s funeral and I thought that things could have been done differently and I felt a sense of outrage. She had jumped off a building. Her name was Celine, she was a young black lady and shortly before she jumped off a building her medication was increased to the degree that she had a constant tremble and shuffling movement and she was dribbling and I could tell that this wasn’t helping. These effects were adding to her problems, they weren’t taking away from her distress and I just felt that other options hadn’t been tried and it gave me a tremendous sense of purpose that I wanted to try and change things. But at the time I didn’t know exactly how I’d go about doing that.
In what way do you believe that, in the case of Celene, this friend of yours, drugs contributed to her death?
I cannot say directly that they contributed to her death, but I can say that the increase in medication added to her problems. I’ve been there, I’ve been shuffling from foot to foot, dribbling. It’s dehumanising and she was putting on weight. Her appearance was important to her and I am sure that it added to her feeling of entrapment. I was suggesting that she needed to negotiate a lower dose but there was a kind of culture, “a doctor knows best” and perhaps for a young black woman it was difficult to negotiate that. It might have been easier for me to negotiate. It took me a couple of admissions before I got the confidence as somebody who came from quite a middle-class background. I wouldn’t go to the conclusion that it caused her to kill herself. I am sure there were a lot of distressing problems she was struggling with, but no-one was exploring those with her and that was key.
When did your own journey into mental illness begin, the process that ended up with you being admitted to hospital?
I think I’d been struggling for some years with some emotional difficulties. Only a few weeks before, I’d just gained a new job. My girlfriend left me a couple of months before so I was struggling with some sense of abandonment and struggling with just becoming eighteen, feeling that I suddenly had to achieve something and be somebody. So there were those pressures and I think the job was actually very boring.
What was it?
I was a trainee draftsman. I was given very little to do and I think rather than seeing myself at the beginning of a dull career, it was easy to move to playing with ideas that I might be really an apprentice spy. An example would be, I turned up at my job one day and they asked me to deliver a parcel at short notice from Kings Cross to Manchester and so they gave me some money for the ticket. I got down to Kings Cross and just before the train was leaving I noticed that I had lost my ticket and I wondered, a man had brushed past me, and I wondered if he’d pick-pocketed me. With no time to think, the train whistle went and I decided impulsively to run round the barrier and jump onto the train. I went into the toilets because I thought I might have been spotted. So I thought well, I need to change my appearance. So I went into the toilet and I got some water and I wet my hair and I took my tea-shirt out from underneath my shirt and put it over my shirt. So I changed my appearance as much as I could to avoid the ticket collector and this was very exciting for me. It reminded me of stories of when I was a child reading about spy stories, and then I thought well, what if I really am a spy, what if this is all set up to see if I’ve got the ability to deliver a parcel under difficult circumstances and this idea really appealed to me, until on the way back I really came down to earth when a diligent ticket collector knocked on the toilet door, which I lodged myself in to avoid him and he only let me off when I acknowledged that I was just an office junior. I think that was the time when I was gradually beginning to drift more and more into this fantasy world and it had a lot of appeals to it.
So you created the fantasy, an alternative fantasy life for yourself?
That’s right. It gave me a sense of importance and I could use my creativity to really escape from a dull reality. A depressing reality, because I had to some extent messed up in terms academically. I drifted for many years really.
Many people create alternative visions of themselves or daydream, but with you it was something that became much deeper?
I think these ideas were very exciting and the more I invested in them, the more I got from them. I started to enter more and more my own world and the intense excitement meant that I found it more and more difficult to sleep, and I think that sleep depravation played a key part and in a way I started to dream while I was awake. If you notice in your dreams, you’re always the central figure. Whatever happens around you is related to you and that’s what my life became like. Street signs became personal messages for me. A person scratching their head was a special sign that I had to decode. Newspaper articles had special meanings. Everything revolved around me just like in a dream.
Was that what people call madness or is it simply a case of the psyche being very clever and inventing ways for you to escape what was a dull or painful reality around you?
Madness is when other people choose to stop trying to understand you. I think madness has a social context. I think I was pretty difficult to understand but I think that people didn’t try to understand me. The moment when my GP decided not to try and reason with me about my gadget inside my chest I believed I had, the moment the psychiatrist decided that I probably had schizophrenia in the first initial interview, that was when I became mad.
So it was not by your own definition, but by that of the medical profession, they looked at you and said, not to put too finer a point on it, here’s a nutcase, let’s get him into hospital?
That’s right. I think there is no doubt I was very confused and needed someone to make sense of those experiences with me, but crucial in the next few months was that decision to kind of dismiss everything I was going through as a kind of a meaningless product of a carnivorous illness, a disease called schizophrenia, which I think is a very contentious idea. There’s a lot of evidence to suggest that people’s psychotic experiences, hearing voices, having unusual ideas, are actual responses to their environment and to their experiences and have an emotional meaning to them and we’re just beginning to start to try and make sense of that with clients and self-help movements are also starting to invest in these ideas as well.
What’s it like to be eighteen years of age and in a mental institution for the first time being forcibly administered drugs, what’s that like?
It’s very frightening. There were people from prison there, people from Broadmoor, people who were very institutionalised and part of me feared that this was the end of the road for me, and as I tried to do things that helped me, helped me deal with stress, I’d always been a fitness fanatic, I found I was unable to do those things. I found I could only now do three press ups. I went for a run, these are the side-effects of the medication, I went for a run and as I came running up the hill my whole upper body seized up in a spasm and I had to crawl up the hill. I didn’t know what had happened to me and as I got to the top of the hill, this African domestic lady led me silently into the hospital grounds and took me to the lift, and as I got up to the third floor, where my ward was, the crampness disappeared. So I thought the nurses wouldn’t believe me what had happened. But apparently it was the side-effects of the medication. So physical exercise which had been an important means of expression for me was now severely limited. There was a sense of hopelessness. I was severely concerned about my future and the ability that I would have to live a meaningful life, a life with excitement, a life with ups and downs. It seemed like there was a danger of me having a life that was going to be very numbed.
What was the doctor’s response to you when you tried to say, “look I need something more than being locked up here, I need something more than drugs?”
I think we got into a battle about that. I think it was seen as me lacking insight into the fact that I had mental illness and therefore I needed medication. It was very difficult to bring up embarrassing side-effects like impotence. That was very difficult to bring up in a ward round with maybe fifteen people, lots of student doctors. To bring that up was very difficult. It felt like appearing on stage, a very important five minutes once a week, to go in and show that you were ready to have your medication reduced or ready to be discharged. There seemed to be a battle of wills really going on.
How were people treated, the rest of the patients, I mean what was the general attitude to all of you?
Different staff were different. There were kind of staff who treated you with disrespect who were quite bullying and quite dismissive and there were staff who treated you as an equal but they were trained not to talk to you about your unusual ideas. If you mentioned an idea that you had, somebody would get out a game of chess or something and suggest you play that.
So there was no therapy?
There was no therapy.
How often a week did you see a psychiatrist?
Once a week.
For how long?
A few minutes.
So that was it, that’s what your therapy amounted to, a few minutes a week?
Therapy was drug therapy.
How was that administered when you expressed to them the fact that you didn’t want to take drugs any more, what happened?
I would be taken by five or six nurses and pinned down and given medication, injected it in my backside. It was quite humiliating and felt very degrading.
So your clothes were torn down?
Yea, trousers were taken down, I was given a needle into my buttock. It was often a very powerful medication that would then leave me for several days extremely sedated. But it didn’t help me understand my confusion. It drove me away from wanting to work in partnership with the people who were supposed to be trying to help me. One time I managed to escape, and this is one of my reasons why I think compulsion is dangerous, is that it drove me to escape the hospital at a time when I was quite vulnerable and I didn’t have the patience to wait for the trains so I just started walking down the track and the train came up behind me and I heard the hooter and I froze and it just stopped in front of me, just beside me, and I got onto the train and I was preoccupied with religious ideas at the time and I said: “Do you believe in Jesus?” The train driver said, “I don’t know about him but it’s a good job Harry saw you”.
(Laughs) Were you able to see the humour in that at the time?
Yes. I suddenly held on to it.
You ran at that time out of fear?
Yea, this is my concern with the present government plans to increase compulsory powers, is that people will run away, people will then be at more risk to themselves and that tiny minority who are risk to others will be more risk to others. So it will actually increase dangerous behaviour and damage people’s lives. We’re beginning to enter an age where we accept difference more, where we understand people who have different beliefs, different religious beliefs who come from different cultures, and it seems one area where we’re only just beginning to do that is in mental health. That’s the next civil rights movement, I think. People who hear voices who are able to live very fulfilling lives, we’re learning that hearing voices is much more common than it was previously thought. The paranoid beliefs, many of us have paranoid beliefs, and flirt with paranoid beliefs and mental illness isn’t the other. There’s a continuum between what we see as mental health and confusing ideas and we all slide along it, distress and pain are part of life and living. If we medicalise it and pigeon hole it, we’re going to only breed misunderstanding and I think that’s dangerous. One of the government proposals is to further medicalise people with personality disorders. People who are considered to be potentially dangerous, that is increasingly being now seen as a mental illness. To me that’s deeply problematic, you know, when are we going to pathologise love? Is that going to become an obsessive affection disorder? It can often act to take people’s sense of responsibility away from them. If somebody thinks they’re ill, they think there’s nothing they can do about it, whereas research shows there’s lots you can do to cope with difficult experiences like hearing voices or having unusual ideas.
How difficult was it for you to come off medication, describe that process for me.
The first two attempts were failures. I got very high and I was living at home, my parents got very anxious. We got into a battle and ended up back in hospital. I’ve since discovered, and I suspected at the time, but I’ve since discovered that there are actual withdrawal effects, but when you come off the medication instead of coming down you come up. Having been sedated your brain is extremely active and if anything stressful or exciting happens, it’s very easy to experience a sense of mania or a sense of excitement that keeps you awake and your thoughts race. I believe that those states were very much contributed to by withdrawal effects. They were qualitatively different to the original confusion I experienced. Anyway, it was assumed that this was a relapse of illness and I almost became convinced of that myself and felt that maybe I shouldn’t try coming off the medication. But eight months later, I managed to get myself into art college and I couldn’t paint in a straight line because of the tremors I was experiencing. I wrote to my psychiatrist asking to be withdrawn from my medication and the answer was, “no”. So I felt I had no choice, I had to come off again, I had to try it again. I think the difference this time was that I’d left home and I was able to manage some of the withdrawal symptoms by actually smoking cannabis which helped me stay calm. Also these withdrawal effects lasted for many months. I ended up squatting with friends and there seemed to be quite a tolerance really for unusual behaviour, people allowed me to go out walking late at night.
And in that way you were able to come off them?
Yea, I don’t blame my parents for being very worried when I was living at home, but in this different environment I was able to, for example, walk down at night time in the rain with a bin liner to keep me dry down to the non-stop picket outside the South African Embassy and talk at length with the protestors there with zest and passion and then walk home in the morning and nothing happened. You know I could pass through these highs….
Nobody said you were crazy?
That’s right. You know it was a little crazy but it was okay, it didn’t lead to any major problems.
How difficult was all of this for your parents?
It was extremely difficult. They were very worried. I think because there was a history of problems labelled as schizophrenia in my family, I think it was easier for them to believe the doctors and not to believe me because I was saying, “look this isn’t working for me”. But I think they were in a very difficult position, they could see that hospital wasn’t a nice place to be and they could see I wasn’t happy there, but they also felt unable to cope, and I must make this clear that hospital was a safety net for them and me, but my problem with the safety net is that it’s a very sticky net, it’s very difficult to get out of once you’re in there, you become ascribed to this role as a mental patient.
From that point where you successfully weaned yourself off medication to becoming a psychologist?
I did a range of jobs, I even worked in a Highgate cemetery as a night security guard. I started doing drama at a community centre and they started asking me to do work with adults with learning disabilities and I asked them why and they said, “because we think you’re good at it”. I was moved by this and thought I could develop that role as a care worker, and as I started to do this I started to develop the idea, what if I managed to infiltrate the mental health system and change things from within but this took many years. I did ten years of care work and psychological training where I kept quiet about my psychiatric experiences because I wouldn’t have been allowed to do that training probably, I wouldn’t have been allowed to do that work if people had the knowledge that I had a diagnosis of schizophrenia. I think we still live in a society that discriminates strongly against people with mental health problems. I’ve got a friend of mine who’s also been given a diagnosis of schizophrenia. She hasn’t had admission for five years. She can’t get insurance so she can’t buy a house. Her life is seriously disabled, not by her mental health, but by everybody else’s prejudices and I think that is something that we need to change. I think we need anti-discrimination legislation specifically for people with mental health problems.
In your process of training you were very concerned, as you say, to keep the fact of your past illness quiet. Yet you did, didn’t you, encounter people who had been nurses while you were a patient? What was their reaction to you?
It was strange because in a sense I’d become the undercover spy of my delusions and there I was being spotted by someone. One time I was in a meeting and the nurse had recognised me and he was saying, “don’t I know you from somewhere?” And he was trying to work out how he knew me, and I was kind of grinning broadly with my teeth slightly gritted saying, “yes, but let’s not go into that right now”. I met with him afterwards and he was very good actually and said, “don’t worry, this is confidential between you and me”. It was very stressful but it worked out okay.
What was the reaction of your colleagues when they heard that you had been a patient diagnosed as a paranoid schizophrenic?
There was a mixed reaction. Some people were clearly extremely uncomfortable and felt that it was something I should keep to the therapist’s couch, whereas I see it as an important consciousness raising process.
Did some people feel that it was you looking for visibility, looking for notice?
I think it’s a bit like people being at funerals, people don’t know what to say. It is fairly unusual. I am the only clinical psychologist I know in the country whose been given a diagnosis of schizophrenia. There probably are others, there’s many people in the closet and I think you know it’s like homosexuality in the 1960’s. People are only just beginning to come out.
Because it’s not uncommon in the field of addiction treatment, for example, in fact it’s quite common for former drug addicts, former alcoholics to become counsellors and therapists. Why is it so unusual in the field of clinical psychology?
I think in the mental health professions in general there’s a them and us culture. I think all the mental health professions in a way feel that they have to be role models of what it is to be sane, that we end up being sanity consultants and in denial about the rest of our lives, the complexity of living.
Stop labelling people do you mean as paranoid schizophrenics or demented or whatever?
Yea, but see unusual experiences, see distress as part of the rich tapestry of life.
Isn’t it all very well until somebody whose in the midst of that rich tapestry is beating someone to death with a hammer or a machete?
That is extremely rare. Since “care in the community” has happened the actual killings by people with a mental illness has gone down. But you wouldn’t think that the way it’s reported in the press and the way the present government panders to that perception that mentally ill people are dangerous. People who drink and drive are far more dangerous, drivers are far more dangerous. What I’m arguing for is not complete laissez-faire, I’m arguing for better relationships with patients that we build services based on negotiation, not dominated by ideas of compulsion. Yes, compulsion is necessary sometimes, but we should try everything else first. We don’t really know how far we can go with negotiation until we try it and we haven’t tried it, particularly in this country. In Scandinavia, in Holland, services are much more based on negotiation processes and collaborative approaches.
How great is the task that you see ahead in terms of defeating the drug culture? I mean I should ask you first, is the drug culture still the prevailing, the dominant, ethos in the treatment of mentally ill people?
We are beginning to get a more holistic rhetoric, we’re beginning to have more time given to psychological ideas and social ideas. But nevertheless the drug culture still predominates and across the country when I visit services, there’s no question given by doctors to the fact that patients with psychotic problems will be maintained for a very long time on their medication. Recovery is not really looked at, there’s more of an idea of we need to maintain people.
Those who argue the case in favour of the much more therapy-based talking-cure approach say, that doctors are part of a culture, becoming part of a culture, which wants to medicate away pain, and the legitimate pain that people face in their lives is something that they’re not being encouraged to face, they’re told instead look, take Valium, whatever, to avoid the pain. Do you agree with that criticism?
I think doctors are in a difficult position. I think they’re expected to come out with a quick remedy. There’s huge investment by the pharmaceutical industry in this. They sponsor a lot of research and they won’t look at the kind of research that I think will be really interesting like how people like me recover. If you had HIV and there was a group of people doing really well, you’d want to look at them to see why they were doing well, what was different about them. But that hasn’t happened in mental health. It’s a much more fatalistic set of assumptions.
Just get him on Librium and keep him there.
Yea, and there’s a huge investment in that. Drug companies you know spend millions of pounds producing very dodgy research which shows the effectiveness of their treatment.
But if you’re a doctor, for example, on a big housing estate where you have people coming in to you every day, lots of people coming in every day with nervous complaints of one kind and another, you’re not going to have the time are you to sit down and make that personal investment, to ask them about their lives, the roots of their problems?
What I’m trying to do in Tower Hamlets, where I work where there is a high level of poverty and depravation, is work as an ally with self-help groups, hearing-voices groups, recovery groups, to help people rebuild their lives, and in doing so help the community rebuild itself. I think that when people get together and share ideas they can achieve amazing things and in recent years the self-help movement here in this country, the hearing-voices network, I’ve learnt more from them than I have in my six years of psychology training.
But yours is a story ultimately of hope of what can be achieved. When you look back on the experience of mental illness, the trauma that you went through. Are you glad you went through it, is it something that you believe was worthwhile in your life?
Definitely. Even my psychosis itself for me it actually enables me, emotionally it allowed me to move on. If you look at the six or seven years before I actually had a psychotic episode, I was kind of struggling, I was blocked. The actual psychosis allowed me to come out of myself and move on. I very nearly became a long-term mental health patient, I strongly believe that. But nevertheless through the struggle that I went through, it has given my life a sense of meaning and I want to create better mental health services that are more enabling, you know, I want to change the way we think about human experience.
Rufus May, thank you very much.