Devon - Interview 12

Age at interview: 49

Age at diagnosis: 22

Brief Outline: Devon, 49, is married and was born in Jamaica; he came to the UK in 1965. He was diagnosed with paranoid schizophrenia aged 22 and depression aged 48. He is a founder member of the organization Sound Minds a user-led music project.

Background: Entertainer, married with 1 adult child and 7 stepchildren. Ethnic background/nationality: Afro-Caribbean (born Jamaica); in UK for 42 years.

More about me...

Devon, aged 49, is of Afro-Caribbean origin and came to the UK aged 7 to join his parents when his grandmother died. Devon is a founder member of the music project Sound Minds. His band, Investigators, reached number one in the reggae charts in the 70s.

In his twenties, Devon began grieving for his grandmother' he was squatting, not eating properly, smoking drugs and didn't care what happened to him. His mother became concerned and called a doctor who wanted to admit Devon to hospital, Devon protested and the police came. In hospital, Devon was sectioned under the Mental Health Act and restrained and tranquilised. Devon believes he was given a heavy dose of medication (Modecate) because he was tall with long hair and therefore perceived to be violent' he couldn't stand up and would dribble. After a year, he attended a day hospital and then a community day centre. 

When Devon ran a music workshop for young Black men he felt like he was getting better so he stopped taking his medication, had a relapse and was hospitalised again. After leaving hospital he attended a rehabilitation service but felt isolated' he thought the only person who could help was God. Devon asked a minister to pray for him to be well again and the minister laid his hands on him and prayed and Devon gave himself to Jesus as a Christian and became a Deacon, preaching and teaching Sunday School.

While working in the hospital as an occupational therapy technician, the hospital asked Devon to run a community music project. The project became Sound Minds - www.soundminds.co.uk - a user-led charity. At Sound Minds Devon plays in a reggae band, runs live band sessions, works with their drama company Theatre Vision, and runs a buddying scheme. For Devon, music is therapeutic. Devon also sits on the London Implementation Team meetings, and does media work speaking and advising about mental health. He's glad to have a voice.

Devon thinks his mental health problems were caused by the death of his grandmother and the lack of bonding he had with his parents. He believes that symptoms differ for Black people because of their culture and because they are more spiritual. He also believes that medication affects Black people differently, perhaps because of the pigmentation in their skin. Devon says institutionalised racism is no one's fault but is embedded within the system. To treat mental illness Devon believes you should address the root problem mentally, physically and spiritually. He doesn't think there is a cure but that people need different treatment and support as they develop. 

Devon says his story is a calling, a spiritual quest and that mental health problems can be a gift. He describes himself as a 'wounded healer' because he helps other people going through what he has been through. He thinks service users should create their own services and help each other and that services should provide support and training for this.

Devon reflects on why Black people don't want to use services and says the system needs to be...

To experience bereavement is different from actually saying it. I never thought I go through bereavement until happened to me. Yes. It just gets hold of you, you can't shove it off, it's a hard thing. Causes a lots of mental health problems, bereavement, loneliness, social inclusion. Being in your flat on your own. Not having no work. Unemployed. No money to buy a proper meal. There are loads of people out there in the community. Loads in the community like that. But they don't know where to go to no one. They don't go to a doctor or no GP. They want to deal with it themselves. It's called Breaking the Circle of Fear. Which is something by the Sainsbury Centre in mental health has brought out a paper. You know, some Black folk they don't want to go to the GP, they don't want to go, then them's not treated, because the stories they hear about the system, so we've got to find a way to make it more attractive to help them to go and get treatment before it gets worse. All these things because of the way how the system is. And the GP, oh they have no clue about mental illness. If you go to them about any major problem, they look into the book, any tablets they can give you. Oh.

Devon believes people with mental health problems should support each other and help themselves.

I think we are a community of people within the community and one of the things that I think we should be doing as sufferers, or survivors or people with medical condition, is actually create our own community and support each other in our community. A lot of the treatment and services we don't do. We speak out about how we want them to change but it's down to professionals they are the one who are funding the money. But the one thing they can't give us is the care and loving. The care and loving doesn't come from professionals. They haven't got time to hug me and kiss me and tell me how much they love me, and give me sweet things, chocolate to eat. That comes from a different source that comes from your friends, it comes from your family, it comes from the community. It comes from your spouse, your husband, your boyfriend and that happens after you've finished the day time treatment. So I think that is what the other thing is. The care and loving that we need. A lot of people talk to me with their mental health problems. Like myself, when I first came here I didn't know my Mum and Dad. I came here. So I didn't have that bonding, or that loving and hugging from my Mum and Dad. I lost it. And through my life I still don't have that love and care from Mum and Dad. Now I am bigger I still don't have it. Only my Dad hugged me once you know, she was different. 

She is a different person. I kiss my Mum. I say 'bye Mum, but she doesn't kiss me. So a lot of people ask me about their mental problem. It's about loving and caring. They lost that when they were younger and it affects them. Yes. A lot of people were abused as children. So that has what caused a lot of mental health problems. The loving and the caring goes. They don't trust people no more, you know, and stuff like that. Abusing babies and what do you think, paedophile and all that. It affects the paedophile person as well. They can't cope with it. That's why they go out and do it. And the people they abuse it affects them and all. So, but that loving and caring, that's the other part of the treatment which you can't get from the professional. That comes from the community. And we are a community of people within the community and we have got to support each other. Make our own community. And you know create our community. Like for instance there is a them and us thing. When we go out there in the community people might know you have got a mental health problem, you might not look different to the, but they know you have got that. There is a stigma against it and a discrimination taboo, you know, because of the label, and because of what it stands for. Which is people don't understand. So we have got to stick by each other and that is what we are doing now, creating our own, our own services buddying, you know, all these things. We're creating our own community now, so that we can meet in a safer environment and live in our community and people can understand us. So I think we should build our own community and help ourselves. Yes.

Devon believes that the system makes it difficult for professionals to listen.

When people are interested in me. Or people say, you know, they want me to, they say, 'Devon I want you go on this board or I want you to speak at this meeting.' I'm thinking thanks very much, you give me a chance to speak. And that's important in mental health. And so that's what I'm saying, one of the important things in mental health, is actually listen to what they are saying. Attention. Give them attention. Because in my experience of mental health system. You might say, the doctor say, no the nurse might say, 'You can't go into the kitchen and drink the milk, Devon, from the machine. You keep drinking the milk. I am going to lock the door.' He's not hearing what I am saying to him. He's doing what he wants you to do. I'm not saying I want the milk in the kitchen. I'm saying, I'm saying something else. But he's not hearing me. I'm saying I want something. Can you give me something, but he thinks I want the milk in the kitchen because I am going into the kitchen. So he locks the door. 'Don't go outside the ward, Devon, you are on section and we don't want you to go out there.' 

He's not hearing what I'm saying. I don't want to go outside. I said to him, 'Can I play my music. I want to hear my music. I want my Mum to bring some of my music in. That is what I would like, to get my music.' But he's not listening. He's got lots of things to do on the ward that day. He can't cope with it all. And even to this day when professionals are working here like [name removed]. The way how to do it, like, you have got to keep say to them, I want to, keeping saying to them, and one day it triggers off and hear what you're saying. They've got loads to cope with. It's not their fault. Most of these things, people have a go about their consultant and the doctor. It's not their fault why these things are happening. It's the way the system is. It's the way of the system. It's way the system has been done, you know. So the important thing is they listen to what people are saying, especially the people who have the illness. They should listen to what they are saying. But they don't listen to them. They just make presumptions. Because of the label of they have been given them. They look at a label. 'He's paranoid schizophrenic. So we put him in that category, he must be saying this.' Not necessarily. Things can change. Actually listen to what he's saying. Look at what he does. Look at his care plan. And listen. Yes.

And now people are beginning to listen to me and that is what makes me feel good.

Devon says professionals could treat people with mental health problems as a whole' mentally,...

The other thing is. There is another thing that I can say. You treat people wholesome, healing is the proper word. There's no cure for some of these illness. Cancer there is no cure. Blood pressure, no cure. Alzheimer's no cure. Mental illness there is no cure. So you're looking for healing. When you have a healing, it keeps you going and supported along the way, until somebody finds a cure. 

So healing of any illness is to treat people mentally, physically and spiritually and the root problem. And then you find the root problem. You can treat people just for one thing only. If you are Alzheimer, you can't treat them for the Alzheimer's alone. You have got to treat them spiritually as well. You have got to treat them physically as well. Because what, when one triggers off it affects the other. And it is all those three things, mentally, as well as the person, mentally, physically and spiritually. And those are the things that make a person. So I think the professionals should, you know, take that on board.

Devon says he was given bigger dose because he is Black, and couldn't walk properly as a result,...

So I was down in the hospital on all fours, very badly treated. Either because of institutionalised racism, because of my long hair and smoking dope. Being sectioned for no reason. I responded to treatment and that's why I got better. The other thing why I got on to the responding treatment I worked with the people that were helping me, the doctors, where other folks, other Black guys who didn't, they gave them the medication' Oh it affected me physically, I was like this on all fours. But because I wanted to get better, and get back out into the community and do my music. That is what gave me the driving power, the will to get better. Because people said to me, 'Devon you are a good musician. You write songs, your band.' So that made me really want to better and get out there and do my music again. 

So I listened to what the doctor was saying to me. I never disregarded. They used to say to me, 'We are going to give you this medication.' Some of the guys would say, they would fight them. 'No way.' I said, 'Give it to me. Even though it was making me bad.' Because I knew that was the right thing to do. I said to myself, 'These are doctors and nurses. They're not trying to harm me.' Because when you are paranoid you think people are trying to hurt you or harm you. It did seem that way to me at some point, that they were trying to hurt me, or trying to harm me. But something in the back of my head said, 

'They have been trained. They wouldn't want to harm you. They've been trained. If they have been trained as doctors and nurses why would they harm me?' But other folks because of their paranoid mentality, it seems that they are trying to have a go at them and that is why I responded to the treatment I was getting.

Devon thought his hospitalisation was a mistake and talks about institutional racism.

So stayed here' I fell asleep actually on the bed. This is the evening time I was admitted, and it was a Wednesday night. I remember it very vividly and then I fell asleep and I woke up in the middle of the night. I got up and I went to the office again and there was a nurse sitting there with her head down like that, I think she was sleeping. I said, 'Excuse me love. I am all right now. I think there has been a big, big mistake. I need to go now.

The next thing I know she had pressed a buzzer and four big white person ran down the corridor and got me on the floor, held me down, and injected me with tranquillizer for the first time and I was unconscious for four days. I nearly died, you know. And on the fourth day I came back conscious and they examined me.

I collapsed again that day, and I said to them, when I was on the bed. 'Can you let my parents know what has happened to me.' But they didn't let them know. It was days before they told them.

Anyway it was at that point that I felt different in my body. My mind left me, my body was different. The way I was thinking was different, you know, like I had lost my spirit. I lost the drive. I lost myself. Due to what they gave me in the medication. It was an injection for me, they held me down and forced it upon me. 

One other, most of the problems, most of the situations was, was it wasn't so much racist it was more institutionalised racist. It's embedded within the system. Not actual racist coming from the mouth of the people. But it's embedded in the system, because it's embedded from the Empire as I am saying, from that time. It's embedded in the system from when they came over in the Wind Rush and no dogs, no Irish, no Black people. As I am saying it's embedded within the institution from that, from that era and so it was still in the hospital system, not just in the mental health hospital, it was in the institutions in the country. The church, all institutions, the government, that is what they mean by institutionalised racism that is what it means, it doesn't mean racism from a person. It means it's embedded within the institutions and that is why they call it institutionalised racism. That is what it is yes, so it is embedded with them. So when the, the police came, 'Oh you've been smoking dope Devon.' So it is in the system, the police system, you know. Without questioning it or understanding it, it's in the system, so you have to deal with it, because it is part of the system. In the school you can't come to the trip, you're a Black sambo. All these different. It's in the system and that is what they mean by institutionalism racism which is different from racism and it's different from prejudice. They're the three areas, institutionalised racism is from the institution. It's still in it now. It's not going to come out for years yet. Because it is still in the institutions and the court system or the probation, it's all in there. Not because of the people working there, but from the past. It's still there. And that is what everyone's trying to fight now. Right now everyone is trying to fight to get it away from the system and make it a new system where everyone is accepted and everyone is treated the same and fairly. Which is right, isn't it when you think about it? It's no one's fault. It's no one's fault. It just that it's imbedded within the system because of the way our, the world was before it's no one's fault now, it's just the way it happened within the system, so that is why I don't fight anyone now because of it. I argue and criticise and talk and debate about it. How we may change it. It's no one's fault. It's not the police fault, it's not the fault of the government. It's the fault of the institution and the way the Empire was before it all happened. Yes.

Devon's mother called the doctor and then the police because she noticed that there was something...

My Mother didn't know where I was in the borough. So someone said to her they saw me walking around the street looking a bit like I needed some attention like. I needed someone to look after me. Because I stopped eating. I was just drinking alcohol, smoking drugs, and partying every night and not taking care of myself, because I was grieving. 

So I went round my Mum's place. She had just came back from Jamaica on holiday and she brought back some stuff for me. And she cooked dinner. And she said to me, 'I have not seen you for a long time Devon. Are you all right? I have called a doctor. I am concerned about you.'

So not long after that the doctor came and examined me at my Mother's place and then he said, 'I will speak to you another time.' Then not long after that another doctor came back, this was from a hospital doctor. So he came and examined me and said they would take me to the hospital. I am saying, 'I am fine. There is nothing wrong with me.' But my Mum is saying, 'You go with them Devon. You are not well.' So I am saying, 'I am fine.'

Anyway so not long after that the police came at the door. So I am thinking what is the police here for? Have I done something wrong? And then my auntie was there, my Mum said, 'Go along with them Devon. Don't worry. Take the treatment they give you so that you will be well again.'

But this is all like I couldn't understand what it was all about. Because I did nothing wrong against the law. I felt fine. Just a bit stressed, you know hungry, but I came home for dinner. 

Anyway they took to me to the local hospital, mental hospital, and admitted me. And they were in the office talking to the doctor and the nurse about me. The police was there, and my Mum was there and my Mum's sister. And the police asked me, 'Have you been smoking dope, Devon?' I was a religious person. My hair, long locks. So the first question was, 'Have you been smoking dope.' I said, 'I do smoke, because I am religious. I don't smoke for fun. I am a religious person.' And then they talked among themselves.

Not long after that my Mum left, and my aunt left, and the police. And the woman, the nurse, said that is my bed over there. So they took me to another room, examined me, the duty doctor, and they took my clothes and gave me some other clothes. And I started to sit on the bed, and I thought, 'There must be something wrong then, because I trust my Mum.' Something, might be wrong, something that I don't know of that I am suffering from.

Devon says the voice he heard sounded like "my own spirit" and also described believing that the...

They asked me if I was hearing voices. But, I did hear something but it wasn't a voice, it wasn't like a voice out there. It was my own inner self, my own inner' it was coming from me. I could hear it from within me. Like my own spirit saying something to me. He would say things like, 'Stand up off the chair.' And I used to stand up. If he said, 'Sit down.' I sat down. so for someone our there it would look odd for me to stand up and sit down like that all time. Occasionally I would do that. So it was, 'Oh he's got a mental problem.' Right. So the other thing was, 'Give your cigarette to Tom over there and give him one.' So I give him one, and then Tom would come back and say, 'Can I have another one.' And then I would say, 'No.' Not laughing at the voice myself and say, 'Give him one.' So I would call him, 'Tommy have another one'

I was hearing my own inner self saying things to me or just talking, it was no other voice out there. It was within me I could hear it. And when I was watching TV I thought it was talking straight to me. I thought on the TV they were actually talking to me. I said, oh they are talking to the person out there to the viewer. So yes, but I just thought they were talking to me especially because what they were saying, I began to hear what they were saying in the news, because before when I the news was on. I mean I was watching it but I am not actually watching it because the news is boring. You know, I was a young person, but when I got the illness, I began to get ill, I actually listened to the news and the newsreaders they were talking to me. I was thinking these was the newsreaders talking to me, so I was just used to listen to what they were saying, and what they were saying was depressing, it's the news, so that is what made me depressed.

Devon says don't use drugs or alcohol.

Every one has got a different way of treat, coping with' everyone has got mental health problems, everyone has got mental health, but you have got to look on the positive side of using it and the negative side. Some of the negative side, don't use drugs. Don't use marijuana. If, if you can't use marijuana, leave it. But some people use it because they say it helps their mentality'

But nowadays, people, younger folks using it for different reasons, some of them don't use it for religious reasons. They use it for like recreational reasons. To unwind. Or, or to use it to find out experiment with. But when you are young. I can use marijuana now, you know, it doesn't affect me. I'm older now. But if you are young I don't think you should use it. I've heard of stories of people using skunk, American skunk weed, it will make you paranoid. It will make you hear voice. It will make you think people are against you. I advise no young people to use marijuana. Not even alcohol either. To me alcohol is worse than marijuana. People say stop smoking, I think alcohol is worse. Alcohol makes you vicious, violent against your wife, against your family, whereas smoking doesn't. Smoking marijuana causes you to do no harm to no one at all. You're only harming yourself. Smoking cigarettes you are harm yourself. Well passive smoking. If you drink alcohol, it's a bad thing. It makes you aggressive, it changes your mood, everything like that. So alcohol is worse.

Playing music and being an entertainer is therapeutic for him.

But people realise the music I play, you know therapeutic, especially when I am playing my own style of music people say it's fantastic, you know, it helps them. It's just therapeutic. It is gift. I played music before which is good, but I looked at as music as in you know CD and, you know, doing gigs, which I still do, but it is therapeutic as well. And people that come in their music has become therapeutic as well. Because when I play with, because I play with the live bands, I run most of the live band sessions. I work in the live studio and I sit in with each band and play the drums mostly and lead the band, facilitate the band from playing the drums. So I make sure people are playing the right instruments. The songs we are playing, get ready to play, the rehearsals for gigs, get our photographs done, or biography for the website, stuff like that. So I am working with live bands, plus I do theatre vision, the drama section here, because hence coming from the acting background. So I run a Theatre Vision, which is a drama company here. The first time we founded, I founded a drama company, it was a play I put on called the Nancy Web Show which tends from the Nancy the spiderman, the Black spiderman. So I told that story which is a West African folk tales which used to be in the West Indies when I was growing up, as stories, folk stories, but I took the character from the folk stories, and Nancy the spiderman, so he was a Black man and I give him his own show on stage. So I call it the Nancy Web Show and within the Nancy Web show there is music, poetry and improvised sketches and it won acclaim, it won an award. Yeah.

And The Voice newspaper did a big spread of it and it was on BBC 2 Newsnight, depicting Black people with a mental health problem, that was the same thing I went through, it stars racism, the police system, all these things that you have been discussing about Black people. I did into a form of entertainment. And that's quite unique. And from time to time I get 'phoned in to stage it, you know. So at the moment I am still working on to update it a bit more. So that is something else I do. And that is how we founded the Theatre Company here at Sound Minds. We do other theatre stuff as well. So I do mostly live bands, theatre and media work at Sound Minds.

Devon describes how he came to form the organisation Sound Minds.

And then I got involved with my local community, and joined my local community church. All this time I am suffering from paranoid schizophrenia and depression. But because I was suffering from that it made me want to do more of what I am doing. More of this music, more of this drama, helping people. Anyway, I got involved with my local Baptist church and then I got involved with the church itself, they made me Deacon, a Deacon in the church, I was preaching, taking Sunday School, doing entertainment within the borough in the hall of the church. I used to organised music events and at one of the event, the group that was organising it I met two people from my local hospital who knew me when I was admitted to the hospital. Because they know me and knew I played music, they said they were looking for me, they were looking for space in the community to do music with a few guys from the hospital, like myself. 

And I said to them, 'Oh, there is a space round the local Methodist Church. Let me know ask the minister because I know him. Because I meet him when I preach, I'm a preacher there. And yes, and he said they could use a space that they have got in the basement, of the basement studio which was a proper music studio, which actually had people working there professionals, it was a professional studio. But they had a bit of a problem with the church, they weren't paying and rent and stuff like that so the church got rid of them.

And at the same time I asked him so I said to the two persons from the hospital, 'There is space here.' So that is how we, I got involved with a few people at Sound Minds. It wasn't called Sound Minds then. It was just the music group. And then they asked me, they said, 'Devon would you like to get funded and run this, because you are a music man, you used to do music with the bands from Balham, for people in the community' So I said, 'No, I can't do that, I'm all, I'm sick, I'm all drugged out, I can't cope with that. But if you get someone else to do it with me I don't mind.'

So they applied for funding, they got funding, and then they employed someone from the community. We had advertising in the local, in the press and the national Guardian and they found someone and interviewed and I started to work at Sound Minds Black person and that is how Sound Minds started, plus I was working at the local hospital where I was admitted, they took me on as an OT technician to work with the same person who I spoke to in the community who started with the music with me. So he felt, he helped me to, to work at [the psychiatric hospital], to work at the hospital, so that I get some sort of background of working within mental health. And he, and my position there was an OT technician so I did that as well as working for Sound Minds I did three days at Sound Minds and two days working with the, in the hospital. 

I would leave the hospital grounds, come, drive down to Sound Minds, do a session there and drive up to, in the evening time, drive up to Mitchum, do a drop in at Mitchum and then from that time from 8 o'clock go home. And the next day do a bit of [psychiatric hospital], come back do a bit of Sound Minds. It was very hard work then, because at that time, people with mental health problems was working. I was one of the first person to work as a mental health patient full time and in mental health because of the project which was headlining down in the local hospital called User Employment Project, was a new thing. Where, the, the people who employed were people that were part, who had a sickness working within the same hospital that they were admitted in which was never done before. So I was one of the first people to be on that project and that is how I first went to work at Sound Minds and work as an