The following interview is part of a “future of mental health” interview series that will be running for 100+ days. This series presents different points of view about what helps a person in distress. I’ve aimed to be ecumenical and included many points of view different from my own. I hope you enjoy it. As with every service and resource in the mental health field, please do your due diligence. If you’d like to learn more about these philosophies, services, and organizations mentioned, follow the links provided.
Interview with Jacqui Dillon
EM: Can you tell us about the Hearing Voices Network, its intentions and activities?
JD: The Hearing Voices Network (HVN) in England is an influential, grassroots organisation, which works to promote acceptance and understanding of hearing voices, seeing visions and other unusual sensory experiences. HVN is a collaboration between experts by experience (voice-hearers and family members) who work in partnership with experts by profession (academics, clinicians and activists) to question, critique, and reframe traditional biomedical understandings of voice-hearing.
As the limits of a solely medical approach to hearing voices and other unusual perceptions becomes more widely known, and people become better informed about alternatives, there has been a growing acceptance by mainstream mental health providers of the approaches that we promote. Rather than being seen as a radical, fringe activity, HVN in England, which is probably the most well established and well developed network in the world, now has more than 180 groups operating in many conventional mental health settings, including child and adolescent mental health services, prisons, inpatient units, secure units as well as in community settings.
The position advocated by HVN – that hearing voices and other unusual sensory perceptions are common human experiences, for which there are many explanations, provides a much needed antidote to the dominant medical discourse which deems these experiences as symptoms of serious mental illnesses, which need to be suppressed and eradicated with medication. Although some people find these approaches helpful, many do not. Finding a safe, confidential space to share your experiences with other people who are accepting of you and your voices, trying to understand the meaning of these experiences in order to make better peace with them, has been a transformative and healing experience for many.
EM: The Hearing Voices Movement is international in scope. Are there differences and similarities from country to country and culture to culture?
JD: A testament to the significance and impact of the work of the Hearing Voices Movement (HVM) is its rapid expansion across the world. Over the past 25 years we have seen the development of 33 national HVN’s, spread across Europe, North America, Australia, New Zealand, Latin America and Africa, with practically no material support of any kind. These developments are co-ordinated by Intervoice (the international coordinating body for the HVM and allied Hearing Voices Networks).
Although the experience of hearing voices is solitary, complex and varies from person to person, and some research suggests that hearing voices may be shaped by local culture, there are also themes which seem to be common for many voice hearers, across cultures. When I was working on Living with Voices: 50 Stories of Recovery, an anthology of testimonies from voice hearers from all over the world, what struck me was that even though each person’s account was entirely unique, there were a number of key themes which emerged from all of the stories: that the voices were often a survival strategy, that the voices were deemed significant, decipherable and intimately entwined to the hearer’s life story, that voices sometimes used metaphorical language and that healing was not contingent on banishing the voices but about understanding their meaning, improving communication with the voices and consequently, having a more positive relationship with them.
The acceptance of a diversity of explanations for hearing voices, which is a central tenet of the HVM, has been crucial in developing the HVM internationally, without trying to export and impose Western ideas and assumptions about the mind or human experience. The HVM stance is one of respectful curiosity about the myriad ways people have of understanding voices, visions, sensory experiences and altered state of consciousness; we seek to support people to make sense of their experiences, on their own terms. So despite the well-established link between hearing voices and traumatic and adverse life experiences, the HVM explicitly accepts all explanations for hearing voices which may include an array of belief systems, including spiritual, religious, paranormal, technological, cultural, counter-cultural, philosophical, medical, and so on. As well as this, research suggests that perhaps other, ‘non-Western’ cultures have something to teach us about how to live more peacefully with voices.
A recent paper published in the British Journal of Psychiatry compared the voice hearing experiences of people from America, Ghana and India and found that even though there were many similarities in the ways in which people experienced their voices, what was strikingly different was that all of the participants from the USA, were more likely to see their voices as a consequence of a brain disease, to use diagnostic labels and to report violent commands whereas those in Ghana and India reported rich relationships with their voices and insisted that their predominant or entire experience of the voices was positive. None of the American participants did so. I will be travelling to India later this year to speak at the Intar conference and hope to meet with voice hearers there to share experiences and continue to learn more about this fascinating area of human experience.
EM: Can you tell us a little bit about your books Demedicalising Misery and Models of Madness?
JD: What both books have in common is that they challenge the simplistic, pessimistic and often damaging theories of the biomedical model of mental health.
Demedicalising Misery (which I co-edited with critical psychiatrist Joanna Moncrieff and the critical psychologist, the late, Mark Rapley,) attempted to show that the modern conception of madness and misery as diseases, illnesses or disorders that can only be understood within a specialist body of knowledge, fails to do justice to the range and meaning of these experiences. As well as that, such concepts obscure the features of modern society that make sanity a precarious state for many people, and that all too often, their encounters with psy-professionals effects the transformation of despair, withdrawal, disorientation and distress into meaningless ‘illness’.
Models of Madness (2nd Edition, which I co-edited with psychologist John Read), also questions the assumptions underlying many of the dominant theories of mental health – that human misery and distress are caused by chemical imbalances and genetic predispositions – as propagated by the biomedical model. We cite an extensive body of research which shows that so called hallucinations, delusions etc., are best understood as reactions to adverse life events and that psychological and social approaches are safer and more effective than pharmacological interventions and electroshock treatment. We conclude with examining why such a damaging ideology has come to dominate mental health, why it persists and how to change it.
EM: What are your thoughts on the current, dominant paradigm of diagnosing and treating mental disorders and the use of so-called psychiatric medication to treat mental disorders in children, teens and adults?
JD: I think that the dominant paradigm of medicalising people’s suffering and the consequent proliferation of psychotropic medications is a deeply disturbing feature of modern life that urgently needs to be addressed. As it stands, most treatment is administered by people who are often well intentioned yet unaware of the contested nature of such conceptualisations of madness and distress, the vested interests in constructing experiences in such a way and the iatrogenic harm that is frequently caused under the guise of treatment.
Frankly, I believe that it is a scandal that in the 21st century, intelligent people are expected to accept discredited diagnoses for fear of being labelled as `lacking in insight' and having treatment forced on them. Every week, many thousands of people are coerced into taking medication that they don’t want and which frequently does more harm than good. Every week, people are incarcerated against their will, detained under mental health legislation, “for their own good.” Fighting for the rights of people deemed mentally ill, many who have already suffered more than enough, is the last great civil rights movement.
Individualising and pathologising people who display normal responses to oppression, discrimination, trauma and adversity conveniently focuses the attention on the supposed deficits of victims meanwhile maintaining the status quo. We have to take collective responsibility for the endemic suffering in our society – how widespread violence, abuse and injustice is, how cruel human beings can be to each other, how insane the world really is. Otherwise we become bystanders – our silence gives consent. We become complicit, colluding in the further oppression of people who have already suffered enough meanwhile providing huge profits for pharmaceutical companies with their voracious appetite for the control of human experience.
I am proud to be a part of a collective voice demanding a paradigm shift in the way we understand madness and distress. As far as I am concerned, improving all of our personal experiences means that we must collectively address oppressive political structures.
EM: If you had a loved one in emotional or mental distress, what would you suggest that he or she do or try?
JD: Whenever someone I love has been in emotional or mental distress, I would want to start by offering them a consoling hug. I would suggest finding a private and comfortable space to speak and encourage them to try to express how they were feeling, mindful that it is sometimes hard to articulate your thoughts and feelings when you are distressed and overwhelmed. Even if I didn’t immediately entirely understand what was making my loved one feel so distressed, I would assume that their distress was real but that it might take some time for the meaning to become apparent. In any case, I would just sit alongside them; sometimes, simply just being with someone who is distressed is the best, sometimes the only thing to do.
In my experience, people in distress can need reminding that it is perfectly okay to cry and that they don’t need to apologise or to feel embarrassed for expressing their pain and that in fact, it might be helpful. If relevant, I might also try and encourage the person to be as kind to themselves as possible – so often people beat themselves up when they are already feeling awful, which just exacerbates their pain – so gently encouraging someone to treat themselves as you might, a beloved friend, can be soothing.
Sometimes people find it helpful to talk to someone else, outside of their immediate situation. If so, I would support my loved one to find safe, additional support. I might also consider getting some support for myself, if it better equipped me to be there for my loved one.
If someone hits rock bottom, and feels despairing and hopeless, I would endeavour to hold the hope for them; the hope that they can get through this difficult time, the hope that pain can bring new insights, and to remind them that I love them, and together, we will find a way through. Having people in our lives who can take a leap of faith and hold the hope for us, believing in the possibility of healing and transformation for us, when we feel terribly lost and afraid, can be lifesaving. It was for me. This knowledge is a gift we can share and pass on to others.
Jacqui Dillon is a respected speaker, writer and activist, and has lectured and published worldwide on trauma, psychosis, dissociation and recovery. Jacqui is the national Chair of the Hearing Voices Network in England, Honorary Lecturer in Clinical Psychology at the University of East London, Honorary Research Fellow in the School of Medicine, Pharmacy and Health, Durham University and Visiting Research Fellow at The Centre for Community Mental Health, Birmingham City University.
Jacqui is the co-editor of Living with Voices, an anthology of 50 voice hearers stories of recovery, Demedicalising Misery: Psychiatry, Psychology and the Human Condition and the 2nd Edition of Models of Madness: Psychological, Social and Biological Approaches to Psychosis. She has published numerous articles and papers, is on the editorial board of the journal Psychosis: Psychological, Social and Integrative Approaches and a foreign correspondent for Mad in America. Jacqui is also a voice hearer. See www.jacquidillon.org
Eric Maisel, Ph.D., is the author of 40+ books, among them The Future of Mental Health, Rethinking Depression, Mastering Creative Anxiety, Life Purpose Boot Camp and The Van Gogh Blues. Write Dr. Maisel at firstname.lastname@example.org, visit him at http://www.ericmaisel.com, and learn more about the future of mental health movement at http://www.thefutureofmentalhealth.com
To learn more about and/or to purchase The Future of Mental Health visit here
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