Reviewed by Nancy Nyquist Potter, Professor of Philosophy and Associate with the Department of Psychiatry and Behavioral Sciences at the University of Louisville.
Emily Knoll offers readers a first-person account of her experiences with voice-hearing, telling of her journey of fear and despair, and her growing path to understanding not only herself but the phenomenon as well. Her memoir is aimed at a young adult audience and is written accessibly but powerfully in the present tense, giving an immediacy and concreteness to Emily’s story. This memoir is extremely rich in conveying to readers a non-pathologizing way to think about voice-hearing and voice-hearers. It should be read not only by voice-hearers themselves, who will find comfort in her narrative, but also by mental health professionals, as it presents a challenge to the biomedical model of voice-hearing as evidence of psychosis.
Phenomenology.
Emily describes in detail the experiences of overwhelming emotions that accompany and sometimes lead up to voice-hearing. Terror, shame, confusion, anger, failure as work and education become too difficult, and low self-esteem are almost constant companions in her path toward knowledge, recovery, and employment. These varying emotions are conveyed clearly in ways that many readers can relate to and which may help them understand what Emily’s experience of being a voice-hearer has been. As Emily interprets them, her voices are separate from her (87). During one period of her early life, she develops eating disorders as a way to cope with her emotions. Later, she turns to alcohol, which she learns makes her feel more depressed and even suicidal. She also goes through agonizing periods of isolation, which serve to protect her but tend to increase the voices and her anguish. She longs for connection—to tell others what she was feeling, and she needs listeners who will understand and not treat her like she’s crazy. But as she begins to see psychiatrists who diagnose and medicate her, she fears that she is ‘trapped within a world of illness’ (108). ‘I’m not who I was before I cracked up,’ she screams at her mother (p. 90). Cycles of retreat and resistance are discouraging and defeating. She does have some close friends, such as Beth and Daniel, who listen, spend time with her, and stand by her, and the role of these people in her life cannot be over emphasized; friends keep her tethered to love and reality, and give her hope that she is capable, worthwhile, interesting, and fun just as she is.
Challenging the biomedical model.
Challenging the biomedical model.
Emily’s experiences with mental health professionals illuminate the need for more clinicians to learn to think differently about voice-hearing and to challenge the prevailing model. While some clinicians in Emily’s story play a crucial role in departing from the biomedical model, others do so less. The question directly arises in Emily’s story of what the ontology of voice-hearing is and what meaning to make of it. Emily receives numerous diagnoses, including Borderline Personality Disorder, schizoaffective disorder, and schizophrenia; none of them seem to fit. Schizophrenia seems to be the most common diagnosis given, perhaps due to an ontological and epistemic commitment to categorizing voice-hearing as a symptom of psychosis. But, as I explain below, it has become increasingly clear that not all voice-hearers are mentally ill, and the question arises as to just what to make of such experiences and when to think of them as symptomatic and when not to. Causality is also a contested issue in voice-hearing. Emily, who as an adult is an academic student working towards her Master’s degree, is a brilliant, talented, and sensitive child when we meet her. Her childhood development occurs in the context of her father’s abandonment, pressure from her mother to be a high achiever, and tension between her grandmother and her parents. Early on, Emily draws on imaginative powers to entertain herself and to escape difficulty in daily life. She often needs to retreat from uncomfortable and tense environments. Yet it is not clear that her voice-hearing is caused by traumatic experiences. After undertaking considerable research into others with such experiences, Emily concludes that ‘This trauma paradigm risked being as reductive a model as the biomedical explanation that psychiatry gave for voice-hearing’ (154).
In terms of treatment, some clinicians suggest that she needs to lower her expectations, and they medicate her in ways that she finds are dampening her creativity (96). These forms of treatment are fairly common experiences for voice-hearers. But other clinicians normalize Emily’s voice-hearing, bringing together questions of ontology with questions about treatment and recovery. When Emily arrives at University, for example, her therapist Daphne Coton explains that ‘You can hear voices and not be psychotic,’ a position that some clinicians who are committed to the biomedical model of mental disorders may reject (154). Daphne also tells Emily that ‘the voices are parts of yourself’—an idea that seems antithetical to Emily’s belief that they are separate from her— and she asserts that no medication can make the voices go away. ‘We all hear inner voices,’ Daphne says to Emily. ‘It’s just that yours are outside your head. So you have to work hard to remind yourself that they come from within you. And that it’s your mind creating them’ (104). Later, when Emily tells Daphne, ‘I just wish that I was like the others, and I didn’t hear voices,’ Dr. Coton bluntly replies, ‘Well tough, you do. So you’ve got to think of ways to cope.’ A central part of Emily’s coping and recovery includes becoming part of a network of people who are talking about voice-hearing and reframing it so that it isn’t as stigmatizing and damaging (see below.) Many clinicians guide Emily toward communities with whom she can feel more comfortable. For instance, she is recommended to attending a ‘hearing voices’ training course to learn to facilitate peer support groups, and this somewhat alleviates isolation and stress by finding connection with others who will listen openly and respectfully and will be encouraging of change and growth.
An important message in Emily’s book is that there is no monolithic way to frame voice-hearing. Instead, there exist diverse experiences and many strategies of dealing with voices. Some reject their voices and yell at them to go away, others have a dialogue with them. Emily learns that some voice-hearers accept their voices and even welcome them.
Stigma
In terms of treatment, some clinicians suggest that she needs to lower her expectations, and they medicate her in ways that she finds are dampening her creativity (96). These forms of treatment are fairly common experiences for voice-hearers. But other clinicians normalize Emily’s voice-hearing, bringing together questions of ontology with questions about treatment and recovery. When Emily arrives at University, for example, her therapist Daphne Coton explains that ‘You can hear voices and not be psychotic,’ a position that some clinicians who are committed to the biomedical model of mental disorders may reject (154). Daphne also tells Emily that ‘the voices are parts of yourself’—an idea that seems antithetical to Emily’s belief that they are separate from her— and she asserts that no medication can make the voices go away. ‘We all hear inner voices,’ Daphne says to Emily. ‘It’s just that yours are outside your head. So you have to work hard to remind yourself that they come from within you. And that it’s your mind creating them’ (104). Later, when Emily tells Daphne, ‘I just wish that I was like the others, and I didn’t hear voices,’ Dr. Coton bluntly replies, ‘Well tough, you do. So you’ve got to think of ways to cope.’ A central part of Emily’s coping and recovery includes becoming part of a network of people who are talking about voice-hearing and reframing it so that it isn’t as stigmatizing and damaging (see below.) Many clinicians guide Emily toward communities with whom she can feel more comfortable. For instance, she is recommended to attending a ‘hearing voices’ training course to learn to facilitate peer support groups, and this somewhat alleviates isolation and stress by finding connection with others who will listen openly and respectfully and will be encouraging of change and growth.
An important message in Emily’s book is that there is no monolithic way to frame voice-hearing. Instead, there exist diverse experiences and many strategies of dealing with voices. Some reject their voices and yell at them to go away, others have a dialogue with them. Emily learns that some voice-hearers accept their voices and even welcome them.
Stigma
Goffman describes stigma as an experience of being deeply discredited due to some characteristic or attribute of a person. He argues that, rather than thinking of stigma in terms of negative attributes, it is better to think of it as a relation between groups. In mental illness (or perceptions of it), the relation is that the stigmatizing attributes are always understood in the context of the ‘normals’ (Thachuk 141). ‘Public stigma encompasses negative stereotypes, prejudice and discriminative behaviours present in the general public, while self-stigma refers to internalization of these stereotypes, prejudices and discrimination’ (Vilhauer 2017, 6). Thus, stigma is part of a complex knowledge structure that negatively affects marked social groups (Corrigan 2004). In fact, Thachuk reports that people considered to have mental illnesses often find the stigma attached to them to be far more painful than ‘having’ the mental illness itself(141). Just referring to voice-hearing as ‘auditory hallucinations’ is stigmatizing, because hallucinations are clinically and popularly associated with schizophrenia and psychosis. Vilhauer (2017) found that media associates voice hearing with schizophrenia; she performed a literature review on damage experienced by voice-hearers who are stigmatized. Harms suffered by the stigma of voice-hearing include not being able to talk with others about the experience because of fear and shame; isolation; low self-esteem; and heightened stress of living alone with a confusing problem. Additionally, when mental health professionals hold low expectations for recovery, voice-hearers can become discouraged and trapped in illness (see 108; 173). These are all difficulties that Emily writes about in her memoir, where she makes vivid how destructive the stigma of voice-hearing really is.
Persistence.
Persistence.
Emily’s story is one of struggle, terror, and pain—but it is also one of persistence. Readers come to see that lowered expectations of people who hear voices and have a diagnosis of psychosis are not always appropriate and may even be undermining. Despite mistakes, Emily continues to pick herself up, find avenues of recovery, and dedicate herself to playing the cello and to research on voice-hearing. In fact, I have permission to report here that Emily is a pseudonym for Roz Austin, who received her Ph.D. in 2017 from Durham University as a member of the ‘Hearing the Voice’ research project. Drawing on work in cultural and emotional geography, Dr. Austin’s survivor-researcher-led project investigates emotional aspects of the experience of hearing voices and demonstrates the significance of space and spatial metaphors in voice-hearers’ relationships with their voices.
Emily’s Voices is a poignant and ground-breaking memoir on the phenomenological experience of one voice-hearing person that plainly illustrates the fears, hopes, and strength it requires to face stigma and loneliness yet come out radiant. I was moved by reading this memoir and urge clinicians to read it and consider the limitations of the biomedical model and the successes of other treatment options for voice-hearers.
References
Corrigan, P. 2004. How stigma interferes with mental health care. American Psychologist: 614-625.
Thachuk, A. Stigma and the politics of biomedical models of mental illness. International Journal of Feminist Approaches to Bioethics, Special Issue: Feminist Perspectives on Ethics in Psychiatry, 4(1): 140-163.
Vilhauer, RP. 2017. Stigma and need for care in individuals who hear voices. Int. J. Soc Psychiatry, 63(1): 5-13.
Posted on JANUARY 19, 2018 by MDICLHUMANITIES
http://centreformedicalhumanities.org/emilys-voices-by-emily-knoll-reviewed-by-nancy-nyquist-potter/
Emily’s Voices is a poignant and ground-breaking memoir on the phenomenological experience of one voice-hearing person that plainly illustrates the fears, hopes, and strength it requires to face stigma and loneliness yet come out radiant. I was moved by reading this memoir and urge clinicians to read it and consider the limitations of the biomedical model and the successes of other treatment options for voice-hearers.
References
Corrigan, P. 2004. How stigma interferes with mental health care. American Psychologist: 614-625.
Thachuk, A. Stigma and the politics of biomedical models of mental illness. International Journal of Feminist Approaches to Bioethics, Special Issue: Feminist Perspectives on Ethics in Psychiatry, 4(1): 140-163.
Vilhauer, RP. 2017. Stigma and need for care in individuals who hear voices. Int. J. Soc Psychiatry, 63(1): 5-13.
Posted on JANUARY 19, 2018 by MDICLHUMANITIES
http://centreformedicalhumanities.org/emilys-voices-by-emily-knoll-reviewed-by-nancy-nyquist-potter/
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