- Email: [email protected]
Voices, identity, and meaning-making
Perspectives
The art of medicine Voices, identity, and meaning-making See Comment Lancet 2015; 386: 2124–25 See Perspectives Lancet 2015; 386: 2136–37 See Perspectives Lancet 2015; 386: 2248–49 See Perspectives Lancet 2015; 386: e54–55
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A person comes in to your clinic—any clinic—and says “I am a voice-hearer”. What do they mean? Auditory verbal hallucinations have been clinically defined as auditory perceptions in the absence of an appropriate external stimulus. This definition seems fairly neutral, even benign: it is simply hearing a sound when no sound is present, hearing a voice when there is no-one speaking. However, far more powerful, and at times pernicious, is the idea that hearing voices is first and foremost a feature of severe mental illness, and therefore that it must necessarily involve hearing loud commanding, abusive, or commentating voices. People do report such experiences but they are by no means the whole story. In fact, people hear voices in a wide range of circumstances: for some it is an unremarkable feature of everyday experience, for others it is part of religious and spiritual devotion, an aspect of bereavement, or a source of intense creativity. Studies have shown that voice-hearing in the general population is more common than is usually thought and that up to 13% of people will hear voices at some point during their adult lives. People can hear voices during extreme states of physical exertion or sensory deprivation, and in the context of various neurological and physiological disorders, as well as in a range of psychiatric diagnoses. Like having a fast heart rate, then, hearing voices can occur in a range of contexts and in states which may or may not be regarded clinically as pathological. People who have tachycardia may be exercising feverishly, smoking heavily, or experiencing intense anxiety in response to a social stimulus, but common to all is a resting heart rate of more than 100 beats per minute. By contrast, and even in the absence of any definitive biomarkers for auditory verbal hallucinations, firstperson testimonies and phenomenological studies of voice-hearing repeatedly highlight the heterogeneity of these experiences. Indeed, these accounts call into question the very terms “voice” and “hearing”: some people report hearing non-verbal cries, rustling or buzzing, some describe experiences of “shouting thoughts” and “soundless voices”, others are in communication with alters or other aspects of the self. Research suggests that it would be difficult to draw many immediate conclusions about what the experience of hearing voices is actually like, and what it means, for the person in the clinic. But listen again to the words they have chosen. Is “hearing voices” the same as “being a voice-hearer”? To explore this question—and to explain the apparent paradox that not everyone who hears
voices is a voice-hearer, and not all voice-hearers hear voices—it is instructive to reflect on events at the sixth annual World Hearing Voices Congress in Thessaloniki, Greece in 2014. “Odysseying with the Sirens: Struggling Towards Recovery in Times of Crisis” was the title of the congress. At a time when longstanding crises in Greek psychiatry were reaching breaking point, voice-hearers and their allies travelled there from across the world to share their experiences, campaign for social justice, take part in workshops and film screenings, and hear talks on topics ranging from the medicalisation of suicide, to participatory arts practice, to randomised controlled trials of psychotherapeutic approaches. The unmistakable atmosphere of trust and openness at the congress was underpinned by a strong current of conviction: “We met in Thessaloniki because our lives have value”, begins the declaration produced by delegates at the end of the congress, “Our voices have value and acquire meaning when they encounter other voices”. People at the congress shared an identity that has meaning, an identity made possible through the voices that constitute the global Hearing Voices Movement, or more precisely the people who make up its 20 000-strong membership across 28 countries. The capacity for this collective identity to be a source of hope and pride, rather than shame and stigma, was strongly evidenced in Thessaloniki, and in Madrid at this year’s congress. The psychologist and voice-hearer Eleanor Longden has described how the Hearing Voices Movement has had a positive role in her life: “I’m now very proud to be a part of Intervoice, the organizational body of the International Hearing Voices Movement, an initiative inspired by the work of Professor Marius Romme and Dr. Sandra Escher, which locates voice hearing as a survival strategy, a sane reaction to insane circumstances, not as an aberrant symptom of schizophrenia to be endured, but a complex, significant and meaningful experience to be explored. Together, we envisage and enact a society that understands and respects voice hearing, supports the needs of individuals who hear voices, and which values them as full citizens.”
Although not everyone who uses the term voice-hearer endorses or participates actively in this movement, without it the term would almost certainly not be available or visible as a cultural resource through which people can articulate and share specific experiences and values. www.thelancet.com Vol 386 December 12, 2015
It is worth reflecting on the meaning of this term. Voice-hearer is not part of a medical taxonomy or diagnostic framework. It is not a label given to someone by health-care systems and professionals. Rather, it is an identity which a person chooses for herself. Many who do so embrace it as a way of negotiating, challenging, or rejecting psychiatric diagnoses, especially the diagnosis of schizophrenia. One of psychiatry’s most bitterly contested terms, schizophrenia is typically associated in the clinical sphere, as well as the popular imagination, with devastating dysfunction, chronicity, long-term incapacity, and risk of violence. It is little wonder that few people identify with this diagnosis, positively or otherwise: to say that calling someone “a schizophrenic” is stigmatising doesn’t seem to go far enough in recognising the ways it can simultaneously stereotype, diminish, and dismiss people’s suffering. The term voice-hearer, by contrast, is firmly part of the vernacular and has been nourished, enriched, and popularised through an international people’s movement. It points to a distinct but complex aspect of experience without invoking ideas of disease, illness, abnormality, or even distress. If psychiatric labels frequently construe those so diagnosed as objects of medical knowledge and as passive recipients of care, voice-hearers positively claim an identity which signals an affiliation or belonging to a wider community of people who share their experiences and the desire to change negative perceptions and treatments of them. With the goal of not just supporting but emancipating voice-hearers, and transforming mental health services, the Hearing Voices Movement and the 180 Hearing Voices groups supported by the UK Hearing Voices Network are regarded by many as leading examples of mental health advocacy and peer-support. These networks explicitly welcome all people who “hear voices, see visions, and have other unusual experiences”; indeed, some of the leading figures in the movement have worked closely with voice-hearers for many years on the basis of other kinds of shared experience. It is only in the context of these networks, then, that the apparent paradox of the voice-hearer who does not hear voices starts to make sense. Our project at Durham University—Hearing the Voice—has a longstanding engagement with the Hearing Voices Movement, collaborating in a range of arts and community events as well as in research itself. Although the aims of interdisciplinary academics and international activists are not identical, we share a common commitment to recognising, respecting, and illuminating the frameworks that individuals, professionals, and communities bring to making sense of experience. A voice is rarely “just a voice”; even at its most private it is a cultural and sociological www.thelancet.com Vol 386 December 12, 2015
Paul Baker imhcn.org
Perspectives
2014 World Hearing Voices Congress in Greece
phenomenon and rewards investigation through the myriad of methods we have available to us. Returning to the clinical setting, it is now possible to hear the words “I am a voice-hearer” take on a new resonance—rich in meaning, and suggestive of phenomenological and hermeneutic complexity, it speaks to an understanding of the self that is also part of a collective. “I am” not “I have”. “We are” not “we were diagnosed with”. As much as it articulates an individual identity expressive of experiences that are intrinsically subjective, and could have been or continue to be intensely distressing, this simple phrase also brings with it critical energy and ideas, as voice-hearers are at the forefront of service-user led critiques of biological psychiatry and campaigns for the radical reform of mental health services. If we listen, really listen, the statement “I am a voice-hearer” issues a twofold invitation: it asks that we bracket any assumptions about the nature of auditory verbal hallucinations and their status as symptom, and it opens up a space for conversation, a space in which it is not only possible but important to ask about who or what the voices are, what they say, and what meaning they have in the context of a person’s sense of self and world. “I am a voice-hearer” might not be an easy thing to hear but the real challenge lies in how you, the clinician, respond.
Angela Woods Hearing the Voice, Durham University, Durham DH1 1SZ, UK; and Centre for Medical Humanities, School of Medicine, Pharmacy and Health, Durham University, Durham, UK [email protected] I am the Co-Director of Hearing the Voice.
Further reading Blackman L. Hearing voices: embodiment and experience. London: Free Association Books, 2001 Longden E. Learning from the voices in my head. New York: TED Books, 2013 McCarthy-Jones S. Hearing voices: the histories, causes and meanings of auditory verbal hallucinations. Cambridge: Cambridge University Press, 2012 Woods A. The voice-hearer. J Ment Health 2013; 22: 263–70 Woods A, Jones N, Alderson-Day B, Callard F, Fernyhough C. Experiences of hearing voices: analysis of a novel phenomenological survey. Lancet Psychiatry 2015; 2: 323–31
For Intervoice: The International Hearing Voices Network see http:// www.intervoiceonline.org/
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The art of medicine Voices, identity, and meaning-making See Comment Lancet 2015; 386: 2124–25 See Perspectives Lancet 2015; 386: 2136–37 See Perspectives Lancet 2015; 386: 2248–49 See Perspectives Lancet 2015; 386: e54–55
2386
A person comes in to your clinic—any clinic—and says “I am a voice-hearer”. What do they mean? Auditory verbal hallucinations have been clinically defined as auditory perceptions in the absence of an appropriate external stimulus. This definition seems fairly neutral, even benign: it is simply hearing a sound when no sound is present, hearing a voice when there is no-one speaking. However, far more powerful, and at times pernicious, is the idea that hearing voices is first and foremost a feature of severe mental illness, and therefore that it must necessarily involve hearing loud commanding, abusive, or commentating voices. People do report such experiences but they are by no means the whole story. In fact, people hear voices in a wide range of circumstances: for some it is an unremarkable feature of everyday experience, for others it is part of religious and spiritual devotion, an aspect of bereavement, or a source of intense creativity. Studies have shown that voice-hearing in the general population is more common than is usually thought and that up to 13% of people will hear voices at some point during their adult lives. People can hear voices during extreme states of physical exertion or sensory deprivation, and in the context of various neurological and physiological disorders, as well as in a range of psychiatric diagnoses. Like having a fast heart rate, then, hearing voices can occur in a range of contexts and in states which may or may not be regarded clinically as pathological. People who have tachycardia may be exercising feverishly, smoking heavily, or experiencing intense anxiety in response to a social stimulus, but common to all is a resting heart rate of more than 100 beats per minute. By contrast, and even in the absence of any definitive biomarkers for auditory verbal hallucinations, firstperson testimonies and phenomenological studies of voice-hearing repeatedly highlight the heterogeneity of these experiences. Indeed, these accounts call into question the very terms “voice” and “hearing”: some people report hearing non-verbal cries, rustling or buzzing, some describe experiences of “shouting thoughts” and “soundless voices”, others are in communication with alters or other aspects of the self. Research suggests that it would be difficult to draw many immediate conclusions about what the experience of hearing voices is actually like, and what it means, for the person in the clinic. But listen again to the words they have chosen. Is “hearing voices” the same as “being a voice-hearer”? To explore this question—and to explain the apparent paradox that not everyone who hears
voices is a voice-hearer, and not all voice-hearers hear voices—it is instructive to reflect on events at the sixth annual World Hearing Voices Congress in Thessaloniki, Greece in 2014. “Odysseying with the Sirens: Struggling Towards Recovery in Times of Crisis” was the title of the congress. At a time when longstanding crises in Greek psychiatry were reaching breaking point, voice-hearers and their allies travelled there from across the world to share their experiences, campaign for social justice, take part in workshops and film screenings, and hear talks on topics ranging from the medicalisation of suicide, to participatory arts practice, to randomised controlled trials of psychotherapeutic approaches. The unmistakable atmosphere of trust and openness at the congress was underpinned by a strong current of conviction: “We met in Thessaloniki because our lives have value”, begins the declaration produced by delegates at the end of the congress, “Our voices have value and acquire meaning when they encounter other voices”. People at the congress shared an identity that has meaning, an identity made possible through the voices that constitute the global Hearing Voices Movement, or more precisely the people who make up its 20 000-strong membership across 28 countries. The capacity for this collective identity to be a source of hope and pride, rather than shame and stigma, was strongly evidenced in Thessaloniki, and in Madrid at this year’s congress. The psychologist and voice-hearer Eleanor Longden has described how the Hearing Voices Movement has had a positive role in her life: “I’m now very proud to be a part of Intervoice, the organizational body of the International Hearing Voices Movement, an initiative inspired by the work of Professor Marius Romme and Dr. Sandra Escher, which locates voice hearing as a survival strategy, a sane reaction to insane circumstances, not as an aberrant symptom of schizophrenia to be endured, but a complex, significant and meaningful experience to be explored. Together, we envisage and enact a society that understands and respects voice hearing, supports the needs of individuals who hear voices, and which values them as full citizens.”
Although not everyone who uses the term voice-hearer endorses or participates actively in this movement, without it the term would almost certainly not be available or visible as a cultural resource through which people can articulate and share specific experiences and values. www.thelancet.com Vol 386 December 12, 2015
It is worth reflecting on the meaning of this term. Voice-hearer is not part of a medical taxonomy or diagnostic framework. It is not a label given to someone by health-care systems and professionals. Rather, it is an identity which a person chooses for herself. Many who do so embrace it as a way of negotiating, challenging, or rejecting psychiatric diagnoses, especially the diagnosis of schizophrenia. One of psychiatry’s most bitterly contested terms, schizophrenia is typically associated in the clinical sphere, as well as the popular imagination, with devastating dysfunction, chronicity, long-term incapacity, and risk of violence. It is little wonder that few people identify with this diagnosis, positively or otherwise: to say that calling someone “a schizophrenic” is stigmatising doesn’t seem to go far enough in recognising the ways it can simultaneously stereotype, diminish, and dismiss people’s suffering. The term voice-hearer, by contrast, is firmly part of the vernacular and has been nourished, enriched, and popularised through an international people’s movement. It points to a distinct but complex aspect of experience without invoking ideas of disease, illness, abnormality, or even distress. If psychiatric labels frequently construe those so diagnosed as objects of medical knowledge and as passive recipients of care, voice-hearers positively claim an identity which signals an affiliation or belonging to a wider community of people who share their experiences and the desire to change negative perceptions and treatments of them. With the goal of not just supporting but emancipating voice-hearers, and transforming mental health services, the Hearing Voices Movement and the 180 Hearing Voices groups supported by the UK Hearing Voices Network are regarded by many as leading examples of mental health advocacy and peer-support. These networks explicitly welcome all people who “hear voices, see visions, and have other unusual experiences”; indeed, some of the leading figures in the movement have worked closely with voice-hearers for many years on the basis of other kinds of shared experience. It is only in the context of these networks, then, that the apparent paradox of the voice-hearer who does not hear voices starts to make sense. Our project at Durham University—Hearing the Voice—has a longstanding engagement with the Hearing Voices Movement, collaborating in a range of arts and community events as well as in research itself. Although the aims of interdisciplinary academics and international activists are not identical, we share a common commitment to recognising, respecting, and illuminating the frameworks that individuals, professionals, and communities bring to making sense of experience. A voice is rarely “just a voice”; even at its most private it is a cultural and sociological www.thelancet.com Vol 386 December 12, 2015
Paul Baker imhcn.org
Perspectives
2014 World Hearing Voices Congress in Greece
phenomenon and rewards investigation through the myriad of methods we have available to us. Returning to the clinical setting, it is now possible to hear the words “I am a voice-hearer” take on a new resonance—rich in meaning, and suggestive of phenomenological and hermeneutic complexity, it speaks to an understanding of the self that is also part of a collective. “I am” not “I have”. “We are” not “we were diagnosed with”. As much as it articulates an individual identity expressive of experiences that are intrinsically subjective, and could have been or continue to be intensely distressing, this simple phrase also brings with it critical energy and ideas, as voice-hearers are at the forefront of service-user led critiques of biological psychiatry and campaigns for the radical reform of mental health services. If we listen, really listen, the statement “I am a voice-hearer” issues a twofold invitation: it asks that we bracket any assumptions about the nature of auditory verbal hallucinations and their status as symptom, and it opens up a space for conversation, a space in which it is not only possible but important to ask about who or what the voices are, what they say, and what meaning they have in the context of a person’s sense of self and world. “I am a voice-hearer” might not be an easy thing to hear but the real challenge lies in how you, the clinician, respond.
Angela Woods Hearing the Voice, Durham University, Durham DH1 1SZ, UK; and Centre for Medical Humanities, School of Medicine, Pharmacy and Health, Durham University, Durham, UK [email protected] I am the Co-Director of Hearing the Voice.
Further reading Blackman L. Hearing voices: embodiment and experience. London: Free Association Books, 2001 Longden E. Learning from the voices in my head. New York: TED Books, 2013 McCarthy-Jones S. Hearing voices: the histories, causes and meanings of auditory verbal hallucinations. Cambridge: Cambridge University Press, 2012 Woods A. The voice-hearer. J Ment Health 2013; 22: 263–70 Woods A, Jones N, Alderson-Day B, Callard F, Fernyhough C. Experiences of hearing voices: analysis of a novel phenomenological survey. Lancet Psychiatry 2015; 2: 323–31
For Intervoice: The International Hearing Voices Network see http:// www.intervoiceonline.org/
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