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Peer Perspectives

The Hearing Voices Movement — A Different Perspective

By W.J. Casstevens, LCSW, MSW, PhD

According to 2011 data, clinical social workers comprise almost one-third of the behavioral health workforce in the United States. In the mental health arena, social workers often work with clients who report auditory, visual and/or tactile experiences that other individuals do not. Psychiatry commonly refers to these experiences as hallucinations or, in some circumstances, as flashbacks. Psychiatric terminology, however, can carry stigma and mental health consumers have advocated on their own behalf for changes. The mental health consumer/survivor and service user movements originated, respectively, in the United States in the 1970s and in the United Kingdom (UK) in the 1980s. The Hearing Voices Network, a service user organization based in the United Kingdom, refers to these experiences as “voices, visions and other unusual sensory perceptions.” To respect the consumer/survivor movement, the author uses the terms “voice-hearing” and “voice-hearer” throughout this article, with the exception of quotations.

In response to the question “do you hear voices?” someone in the United States might reply: “No—I’m not crazy!” However, an individual can hear voices without being “crazy” or having a psychiatric label. Research tells us that voice-hearing is found in the general population among individuals not eligible for psychiatric diagnosis. In the course of normal human experience, e.g., after the death of a loved one, individuals have reported experiencing visions and/or reassuring words from their lost beloved. According to Kingdon and Turkington in Cognitive-Behavioral Therapy of Schizophrenia, extensive sleep deprivation, among other conditions, can also lead to unusual sensory perceptions. Further, DSM-5 acknowledges that “[h]allucinations may be a normal part of religious experience in certain cultural contexts.”

Nonetheless, many individuals who hear voices or see visions may not be comfortable sharing these experiences in our society, and much of their discomfort might be due to not wanting friends or family members calling them “crazy.” Sharing such experiences involves additional risk for individuals already involved with the mental health system. Upon discussing unusual sensory experiences, they could find themselves locked up and/or forcibly medicated, if the individual receiving this information responds with fear or panic. States’ criteria for involuntary commitment vary, but generally include being considered a danger to self or others. In some states, e.g., Florida, licensed clinical social workers can commit individuals involuntarily, within legally specified parameters. Commitment involves suspending or removing an individual’s civil rights in addition to enforced confinement.

In this context, mental health professionals may place social values and needs over those of the individual; this can impact how social workers treat clients and how clients respond. According to DSM-IV, voice-hearing, while “particularly characteristic” for schizophrenia, can also be a symptom in bipolar and depressive disorders with psychotic features, as well as many other diagnoses. In sum, hearing voices may be seen as so abnormal that it may in itself lead to involuntary commitment.

In the late 20th century, however, a different perspective on voice-hearing began to develop in northern Europe and the UK. It was Patsy Hague’s insistence that her psychiatrist, Marius Romme, MD, PhD, hear and acknowledge her view of the voices she experienced that led to a “journey that continues to this day, a journey that crucially has always involved voice-hearers and others finding out together what this experience might mean and how it might be overcome.” In the Netherlands, Romme supported this journey from its inception in 1987 through the present movement.

The International Hearing Voices Movement aims to connect people, share ideas, distribute information, highlight innovative initiatives, and encourage high-quality respectful research. This global network allowed the movement to take root and start to flourish worldwide. It supports a “close and respectful partnership between voice hearers—who are experts by experience, their careers and mental health workers, academics, and activists—who are experts by profession.”

This approach to working with voices has been embraced by many voice-hearers, including Ron Coleman, who was diagnosed with schizophrenia and spent 13 years in and out of inpatient psychiatric care, including electroconvulsive therapy (ECT) and neuroleptic medication, in the UK.

In 1991, Coleman began on the road to recovery when his support worker encouraged him to attend a hearing voices self-help group in England. He went on to develop his own ideas about how to recover from mental illness, stating that he owed his life to Hague, Romme, and Sandra Escher, PhD. According to Coleman, “The journey through madness is essentially an individual one; we can only share part of that journey with others, most of the journey is ours and ours alone. It is within ourselves that we will find the tools, strength and skills that we require to complete this journey, for it is within ourselves that the journey itself takes place.”

Colman and his wife Karen Taylor’s team at Working to Recovery provide training and speakers internationally. In Australia, their Hearing Voices Approach training was recently endorsed for continuing professional development by the Australian Association of Social Workers.

The hearing voices approach is not limited to Australia, Europe, and the UK. In the United States, for example, the Foundation for Excellence in Mental Health Care sponsors a Hearing Voices Research and Development Fund to help train peer facilitators in five regions across the country. The fund further aims to support the development of a hearing voices support group network, and Hearing Voices Network USA has an active board of directors.

Despite these initiatives and the international efforts of voice-hearers and collaborative professionals, the Hearing Voices Movement has also received criticism. It disagrees with Western medical model approaches emphasizing primarily pharmaceutical and/or somatic (e.g., ECT) treatment of serious mental illness. Instead, it emphasizes psychological approaches to, and relational aspects of, support and treatment. The movement has observed that the roots of psychiatric symptoms often seem to lie in traumatic life experiences. This is a view many medical model adherents can and do support.

A potentially serious criticism is that individuals on neuroleptic or other psychotropic medication can experience serious adverse effects, if they learn about the movement and then decide to stop prescription medication “cold turkey.” This, indeed, is cause for concern. Stopping some types of medication abruptly and without skilled psychiatric supervision can lead to withdrawal symptoms that may involve a long-lasting reactive psychosis, or even death.

It is important to recognize that the Hearing Voices Movement is not antichoice; it recognizes some individuals can and do benefit from psychotropic medications, and will choose to continue taking these medications as part of their recovery. These individuals are welcome in the movement, as are individuals who do not benefit from such medications and/or who experience serious negative side effects when taking them. To all voice-hearers, the movement offers support and hope.

Social workers in the mental health arena know that with serious mental illness, and persistent negative voices, hope can appear to be in short supply. The movement’s perspective on voice-hearing is one more tool with which social workers in mental health can familiarize themselves, to better support clients who may hear voices.

W. J. Casstevens, LCSW, MSW, PhD, is an associate professor at North Carolina State University department of social work.