1. Living with Voices What does the experience tell us?

2. Hearing Voices Prevalence 4 – 10 % Normal phenomenon A minority gets a psychiatric diagnosis HV not a sign of illness but a sign of problems

3. Hearing Voices Movement Intervoice Accepting and owning voices Emancipation of voice hearers Coping with voices Origin of voices Recovery process

4. Two surveys 1. 60 Constructs 2. Living with Voices

5. What is a Construct? Marius Romme and Sandra Escher (2000) WHO or What do the voices represent? What problems do the voices represent?

6. Construct Deconstructing symptoms and complaints to real persons and conflicts Relating voices to individual solvable problems These data can direct a recovery plan

7. Construct what data do we need? Romme and Escher 2000 – The Maastricht Hearing Voices Interview 1. Identity 2. Characteristics and content 3. Triggers 4. History of the voices 5. History before voice hearing/youth/ vulnerability

8. 60 Constructs Who? People who attended our courses for voice hearers and professionals (2002-2009) in different Western countries (Denmark, UK, The Netherlands, Australia) Voice hearers who were willing to explore the origins of their voices in front of a group Long term history with voices All on medication that didnt effect their voices very much

9. 60 Constructs what did we find? Demographics

10. Identity

11. Characteristics 5% only positive voices 50% only negative voices 45% both positive and negative voices 50% of the voices only spoke to the voice hearers

12. Characteristics

14. Triggers 23% couldnt identify triggers, the rest could: Uncertainty Doubt Feeling depressed Loneliness Social situations

15. History of the voices

16. Circumstances Trauma: sexual abuse (20%), surgery (7%) physical violence (2%) Relational and social problems: in an intimate relationship (12%), loneliness/social isolation (7%)

17. Circumstances Problems in family of origin: death of a (grand)parent, sibling rivalry, leaving home, adoption Other people: moving, giving birth, becoming unemployed, physical illness, visiting a paranormal healer... For 8% it was not possible to identify a special circumstance…bullying/dysfunctional family... One person couldnt identify anything about negative life circumstances

18. History of Youth Problems and circumstancesAmount/percentages Dysfunctional families25 (42%) Sexual abuse9 (15%) Bullying5 (8%) Physical ailment2 (3%) Specific family conflicts2 (3%) Physical violence2 (3%) Numerous moves1 (2%) Unsafe environment1 (2%) Unclear13 (22%)

19. Who do the voices represent IdentityAmount/percentages Family32 (53%) Specific individuals outside the family29 (48%) Aspects of the voice hearer19 (32%) Non-specific17 (28%)

20. What kind of social/emotional problems are the voices representing? Social-emotional problemsAmount/percentages Low self-esteem17 (28%) Problems related to sexual abuse13 (22%) Not able to express anger11 (18%) Not able to trust other people9 (15%) Decreased autonomy8 (13%) Sexual problems6 (10%) Feeling rejected6 (10%) Mourning6 (10%) The inability to express ones emotions and needs 5 (8%) Strong self-criticism5 (8%) Feelings of guilt5 (8%)

21. Conclusions You can talk about life history with voice hearers It is possible to deconstruct the psychiatric label Often you can identify circumstances and people that triggered the emergence of voices Underlying problems can be a focus for a recovery plan Recovery from problems is easier than curing from a brain disease

22. My Life with Voices

23. Living With Voices Our Evidence

24. Trilogy Romme, M. & Escher, S. (1993). Accepting Voices. London: Mind Publications. Romme, M. & Escher, S. (2000). Making Sense of Voices. London: Mind Publications. Romme, M., Escher, S., Dillon, J., Corstens, D. & Morris, M. (2009). Living With Voices. Ross-on-Wye: PCCS Books.

25. Living with Voices Anthology of 50 stories of voice hearers who have learned to live with their voices through accepting them. Contributions from voice hearers from all over the world, including England, Scotland, Wales, Holland, Sweden, Germany, Nigeria, New Zealand, America, Denmark, Norway. Several key themes have emerged that illustrate how it is possible to live a fulfilling life with the experience of hearing voices.

26. Living with Voices: Key Themes Voices are a survival strategy: Point at real life problems in the past and the present Use metaphorical language that can be translated into real life challenges Are split off feelings - feelings that are unbearable Are awful messages about terrifying past experiences

27. CausesEndorsementPercentage Sexual abuse1836 % Emotional neglect1122 % Adolescent problems 612 % High stress48 % Being bullied24 % Physical abuse24 % Not clear714 % Causes of Hearing Voices: (as reported by the 50 voice hearers in the book)

28. Living with Voices: Key Themes Recovery is not about getting rid of voices but about: The person understanding their voices in relation to their life experiences The person changing their relationship with their voices so that the voices become harmless and/or helpful.

29. Living with Voices: Key Themes Recovery is only possible outside of traditional, biological psychiatry: Equating hearing voices with the diagnosis of schizophrenia Schizophrenia is a lifelong label The no hope and lifelong illness approach The passive victim of pathology approach – not encouraged to help oneself The dominance of the diagnosis of schizophrenia – disregarding all other problems Difficulties in social acceptance arising from the diagnosis of schizophrenia The negative effects of psychiatric hospital admission

30. Living with Voices: Key Themes Recovery is only possible outside of traditional, biological psychiatry: When medication doesnt have the desired effect, no alternatives are suggested Medication leading to social breakdown Inability to accept peoples experiences Neither interest in the voices nor in what underlies the experience The disease concept destroying the relationship and possibility of a therapeutic alliance between the voice hearer and professionals Promoting a belief in society that hearing voices is a sign of madness

31. Living with Voices Audrey says: I was first admitted to hospital when I went to see my GP and told them to take me in. I believed that I had an implant in my head. I was having a lot of migraines so I had a lot of pain in my head and it felt like there was something just above my brow which was the root of the pain and I was dopey with the drugs so it made sense to me. I did feel very controlled and like a lot of people were out to get me. Doctors do have a lot of power over you especially if you feel like you are cracking up. Doctors can take all your power away. I had a real go at my GP saying, you are part of a conspiracy and take this fucking implant out of my head. This was a sure way of ending up in hospital!

32. Living with Voices I was back in after about 3 months. It all seemed so pointless. Nothing changed, nothing got better. It was just a place to go when things got out of control. The 2 nd time I was admitted I was so angry. I went in voluntary because otherwise they would have sectioned me. Again I was feeling very angry and fearful, I had been sleeping with knives under the bed. They sent me on an anger management course which just made me fucking furious! Why wasnt I allowed to be angry?

33. Living with Voices The drugs made me sleep so much and the small times when I was awake I was cracking up and it was a really despairing time. I was 26 years old and I was asking, what am I doing with my life? Going round in circles and not going anywhere. It was very frightening and I felt such hopelessness. No one in the psychiatric services gave me any hope, in fact, it was the opposite. In one week I had 2 appointments and on the Tuesday they told me that I had manic depression and on the Thursday they told me it was schizophrenia. What do you do with that? They are completely bizarre words that dont mean anything. I cant even spell schizophrenia so what are you supposed to do with these bizarre diagnoses?

34. Living with Voices: Key Themes Important steps in recovering from the distress associated with hearing voices: Meeting someone who takes an interest in the voice hearer as a person Giving hope by normalising the experience and showing that there is a way out Meeting people who accept the voices as real; being accepted as a voice hearer by others, but also by oneself Becoming actively interested in the hearing voices experience

35. Living with Voices: Key Themes Important steps in recovering from the distress associated with hearing voices: Recognising the voices as personal and becoming the owner of your voices Changing the power structure between you and your voices Making choices Changing the relationship with your voices Recognising ones own emotions, accepting them and expressing them

36. Living with Voices Ronny says: Looking back at the problems I have had, it was essential for me to get them treated by someone who was interested in me as a whole person. That was the foundation for my recovery.

37. Living with Voices Eleanor says: I went back to Bradford and my new psychiatrist was Pat Bracken and that was a massive help. The very first time I met him he said to me: Hi Eleanor, nice to meet you. Can you tell me a bit about yourself? So I just looked at him and said, Im Eleanor and I'm a schizophrenic. and in his quiet, Irish voice he said something very powerful; I dont want to know what other people have told you about yourself, I want to know about you.

38. Living with Voices Audrey says: One of the things I did was to support Aud junior (child's voice) to confront the blue voice (voice of abuser). It took quite a lot, supporting her to stand up to him and to tell him what he did was wrong. He did back off and she became stronger. That was a really big breakthrough and took a huge amount of power away from that blue voice.

39. Living with Voices Antje says: A shaman taught me to talk friendly and slowly to my voices, and ask them to go to the place they belong. After three or four weeks, talking three or four time a day to the voices in this friendly, slow way, they slowed down and became quieter. This made is possible to let the voices Id heard for so many years vanish.

40. Living with Voices Andreas says: I realised that the continuous chain of hatred in the relationship between me and my voices needed a breakthrough. Only when I acknowledged that many things the voices were telling me were true did I become able to forgive them. Only when I asked the angry voices to forgive me did I become less depressed.

41. Living with Voices Ami says: My relationship with my voices changed when I learned to see them as a signal of my problems, when I learned to react positively to them. When they said to me, Look at her, what a disaster, I looked in the mirror and thought They are right, I should dress properly. From a negative influence they became a stimulus.

42. Living with Voices Debra says: I also began exploring other areas of my life and discovered what role the voices played in my life: the need to feel connected to someone, a need for a friend, a need to belong. The voices kept me so busy I had no time for any other relationship, and they also spared me the pain and hurt I had experienced by numerous rejections from people in the past. At least they didnt desert me. I decided I needed to take the risk of inviting real people into my world, and cautiously and clumsily this became my new quest.

43. Living with Voices Rufus says: I believe that, if we can educate people to respect voice hearing and other unusual experiences, there will be a big pressure on psychiatry to change; to stop just trying to repress these experiences, rather than understanding them and helping people to live with them and get on with their lives.

44. Living with Voices Eleanor says: I have had to look down into that black hole and my mind has taken me to some of the worst places that a human mind can go to, but I got through that and I am still here and I am still a voice hearer…It is an incredibly special and unique experience. I am so glad that I have been given the opportunity to see it that way because recovery is a fundamental human right and I shouldnt be the exception, I should be the rule. That is why I want to be part of this movement to change the way we relate to human experience and diversity. Your soul cant breathe when your mind has been colonised.

45. What evidence is this? These stories can support other voice hearers in their recovery – they contain HOPE These stories prove that there are alternative ways of recovery outside the illness-model directed psychiatry We are in need of research methodologies and publications that personalise experiences and at the same time have sufficient power to convince professionals and usesr to act in a more discovery- oriented way Discovery and recovery are intertwined

46. Intervoice 2010 November 2 Intervoice Meeting November 3 & 4 Second World Hearing Voices Conference Nottingham – Sherwood Forest www.intervoiceonline.org Contact: dirkcorstens@gmail.com