The User/Survivor Research Community just released an open letter to Lancet Psychiatry regarding their new pilot project to include people with lived experience as reviewers of their research articles. Several User/Survivor Researchers found critical flaws in the Lancet's pilot, including their request for lived experience reviewers to identify with specific diagnoses and to have no prior research experience. Not having prior research experience can considerably add to power dynamics already at play in the academic world ("professional researchers" vs "service users") as well as preclude the ability for true critical engagement in research. In addition, there is already a very large (and growing) community of researchers with lived experience that are trained PhD-level researchers that would perhaps be more equipped for the positions (or at the very least mentor those without professional research training). Similarly, the request for identification with specific diagnoses inherently places an emphasis on the "medical model", whereas the "lived experience perspective" seeks to deconstruct traditional ways of understanding mental distress. This requirement makes the pilot an example of tautology rather than true engagement with difference.
You can read the full letter HERE.
Really excellent coverage on the Hearing Voices Movement in the US on NBC News today. The piece features some of the amazing people involved in Hearing Voices New York City, as well as Dr. David Kimhy, a researcher who focuses on CBT and exercise interventions for psychosis. The story was a well-balanced and non-stigmatizing take from both the medical/psychological and Hearing Voices point of views.
Watch it here.
Here's a quick list of some interesting things to do & read this Fall related to 'psychosis' & mental health:
Lacan on Psychosis: From Theory to Praxis edited by Jon Mills and David L. Downing. I just started reading this book which is an edited collection of both theoretical and clinical papers on Lacan's approach to psychosis. So far, the book seems accessible for those not particularly well-versed in Lacanian theory. It includes a chapter by the people of The 388, a psychoanalytic center for people with psychosis located in Quebec, as well as many other psychodynamic theorists. I might not agree with everything written in the book (e.g., Ver Eecke's chapter on ego-restructuring therapy is not my cup of tea), but it is an interesting look into Lacanian theory on psychosis and worth checking out. The book includes chapters that extend theory to outside individuals and the therapeutic sphere, questioning what 'psychosis' means in relationship to the wider social world.
Angela Sweeney & Danny Taggart (2018) (Mis)understanding trauma-informed approaches in mental health, Journal of Mental Health, DOI: 10.1080/09638237.2018.1520973
This is a really excellent journal article that lays out misconceptions/myths about trauma-informed care as well as key principles regarding what trauma-informed care means. The authors also discuss how trauma-informed care can be problematic, particularly in the over-determination of trauma by well-intentioned clinicians, as well as the co-option of trauma-informed care & the development of practices without using the voices/guidance of trauma survivors.
Bjornestad J, Veseth M, Davidson L, Joa I, Johannessen JO, Larsen TK, Melle I and Hegelstad WtV (2018) Psychotherapy in Psychosis: Experiences of Fully Recovered Service Users. Front. Psychol. 9:1675. doi: 10.3389/fpsyg.2018.01675
A qualitative study on what people who have experienced psychosis found most helpful in psychotherapy. Some things people found helpful were suggestions/advice during times of crisis; unconditional acceptance and closeness; creating a common language to talk about their experiences; and helping get connected to the social world.
The new IDHA course series "Experience Transforms Practice" started this month. I'm particularly excited to attend the workshop on December 1st with Nev Jones, Katrina Michelle, & Jazmine Russell, titled Making Meaning from Visions & Voices: How To Support People Through Altered States and Finding Solid Ground. The workshop focuses on non-pathologizing approaches to experiences commonly called "psychosis" with a particular focus on social context. The workshop will also provide clinicians with tools to help people navigate these sometimes stressful states of mind. Sign up here.
The ISPS-US 17th Annual Conference is happening November 9-11th in Philadelphia. The theme this year is "Life, Liberty, & the Pursuit of Wholeness in Extreme States." I'm particularly excited about Erin Soros' one-woman show called "Where to Find Liberty" happening on Friday afternoon. The whole program is pretty amazing this year, with many talks on trauma-informed approaches, psychodynamic approaches, and peer supportive. Register online here.
I am thrilled to announce a new training series titled "EXPERIENCE TRANSFORMS PRACTICE" which IDHA will be offering throughout the Fall and Spring. This new training offers advanced continuing education opportunities to learn from a number of experts-by-experience and mental health professionals who have each made unique advances in alternative mental health narratives and practices. Each course at IDHA is taught by both a mental health professional as well as someone ho is an expert by experience. I am teaching a course with Dr. Noel Hunter called "Trauma, Growth, & Resilience: Re-defining Trauma Informed Practice" on November 4th. There are many other amazing courses including "Working with Dangerous Gifts: Reframing Bipolar Beyond Symptom and Cure Mentality" with Sascha Altman DuBurl from Icarus Project and "Supporting those Affected by Suicide: Myths, Challenges, and Collaborative Approaches" with Dr. Peter Stastny and Denise Ranagan from Western Mass Recovery Learning Community. See the whole list here.
Nowhere else in the NY metropolitan area are experts providing education on truly transformative models that have the capacity to shift the way mental health care is practiced. This course is aimed at front-line mental health workers, peer specialists, social workers, psychiatrists and psychologists, who are interested in learning about a new mental health paradigm that goes beyond recovery and clinical support - Experience, Inclusion, Human-Rights, Transformation!
At this point IDHA is offering advanced subscription rates to agencies (and individuals) who want to sign up early and thereby enable others to attend the course, who may not be able to afford tuition. As an agency, you can reserve spots for your staff members at $ 600 for the entire 7-week series (a total of 42 hours of training with C.E. eligibility). It is not required that spots must be filled by the same individuals each time. Each Saturday session is $ 150 dollars full fee for the day. Class size is limited to 35 people.
More info can be found at: IDHA-NYC.org/experience-transforms-practice
I hope that you’ll join us for this incredible opportunity!
The following is a re-post of a blog I wrote for the TRP Collaborative, an organization developed by Dr. Nev Jones to promote stakeholder engagement in the creation of knowledge about psychosis. This post talks about how the history of psychotherapy research began with a "lived" perspective:
During the early days of psychotherapy, a clinician’s understanding of the therapeutic process was closely associated with personal experience. With the influence of psychoanalysis came an expectation that clinicians should undertake their own therapy. You had to be a patient in order to be a therapist, and it was assumed that you could not adequately understand the psychotherapeutic process without first having been a patient yourself. In this way, knowledge about treatment was primarily derived from a lived-experience perspective. Although it is easy to eschew psychoanalysis for reductive or distancing language (at least in its more classical iterations), it should not be forgotten that the psychoanalytic approach has always been grounded within a framework that sought not differentiate between oneself and one’s patients. All were seen as prone to the same intrapsychic conflict(s) and “common unhappiness” (Freud, 1895).
With institutional pressures forcing the pursuit of “evidence-based” research to determine psychotherapeutic “efficacy,” a radical shift has occurred— no longer is the scientist’s subjective experience considered worthy of serious attention. Instead, research is thought legitimate only when one upholds a (seemingly) objective stance. In turn, the individual participants or “stake-holders” of psychotherapy treatments are no longer active participants within the research and development of therapies. Instead, research is conducted primarily by outside observers and based on targeted outcomes created by third-parties. Although there has been some shift in in recent years, for example, with research into peer-support groups such as the Hearing Voices Network, the extent to which the experience of service-users now influences clinical practice is limited. When participating in research, peer perspectives are often ‘justified’ through a clinical framework, as opposed to clinical frameworks being influenced (or justified) by peer perspectives.
My interest in the TRP Collaborative is to bring back the role of stake-holders/service-users in the development of psychotherapeutic treatments/approaches. As a clinical psychology trainee and therapist, I am particularly interested in how therapy is experienced by those who attend it; what their ideas are for how we can improve it; and what outcomes they personally find meaningful. The TRP Collaborative is one place where this type of dialogue can begin to develop. Together, I look forward to seeing what shifts we can bring to psychotherapy research and practice.
I first learned about Isabel Clarke's work from a CBT for Psychosis workshop run by Sally Riggs, a clinical psychologist and the Director of NYC CBTP, a group practice in NYC specializing in evidence-based practices for treating distressing psychosis. The workshop focused on various group psychotherapy CBT techniques. One of the many things that I learned about in the workshop that particularly stood out was the "What Is Real?" group developed by Isabel Clarke for use with people on inpatient units. The "What Is Real?" group draws a great deal from the Hearing Voices Movement in that it just opens up a conversation about things such as voices, visions, or unusual beliefs, from whatever framework the participants seek to discuss them from. The group also focuses on the continuum model of usual experiences, citing the work of Marius Romme and Sandra Escher and the idea of "schizotypy". Rather than asking participants "What makes people more vulnerable to these types of experiences?" the group instead asks people "What are some things that might make people more open to these types of experiences ?" I was struck by this simple change of language, and have since started using it when I run groups on the inpatient unit where I am a current psychology extern. I find that people are much more interested in talking about their experiences when framed in this non-stigmatizing way. The phrasing also seems to add more of a sense of agency-- if someone can be open to an experience, they can also close the experience or modify the experience if they want to. After Dr. Riggs workshop, I looked up Isabel Clarke online and found that she has a whole interesting body of work (as well as several free psychotherapy manuals up on her website). In particular, I discovered Clarke's interest in the spiritual (or what she terms "sacred") aspects of psychosis and how this both can and cannot be reconciled with scientific understandings. This lead me to read her 2008 book Madness, Mystery, and the Survival of God .
Quiet interestingly, Madness, Mystery, and the Survival of God in some respects uses cognitive-behavioral techniques to lead the reader to question a wholly secular stance toward the world, the existence of God, and 'psychotic' experiences. She starts by discussing the work of George Kelly, a therapist and mathematician, who spoke about the ways in which our frameworks for understanding the world can sometimes lead to difficulties incorporating new information, resulting in "rigid construct systems". Much like the concept of "core-beliefs", these frameworks shape the way that we view the world, making it predictable and understandable based on past experiences. Clarke argues that in the secular West, we have several sets of core beliefs or what she calls "assumptions" that go unexamined, all of which contribute to an inflexibility regarding the existence of the sacred. According to Clarke, this set of assumptions include the ideas that: 1) Rationality is more important than feeling/experience; and 2) Human beings are self-contained within the confines of their bodies. Clarke uses the example of advertising to question the first assumption. She states that advertising does not typically work on rationality when selling products, but through experience and emotion (e.g., car companies do not list the safety features when selling a car, but show glamorous images targeted to our emotional system). Likewise, Clarke questions the idea of the second assumption through ideas from psychoanalysis, such as the concept of "transference" or the phenomenon where people throughout life respond to others in the same manner as that of formative relationships with caregivers. Here, the caregiver is not "present" in a bodily sense, yet a relationship to that person is still maintained.
Clarke also draws from John Teasdale and Phillip Barnard's Interacting Cognitive Subsystems (ICS) Model of the mind. ICS posits there are two main subsystems which scaffold our experiences, The Propositional, which organizes experiences using words/logical and (what she terms) The Relational, which involves emotions and feelings. These two subsystems are synchronized and work together to make sense of the world. Clarke describes The Propositional as providing 'boundaries' to experiences of The Relational. She posits that in the case of psychosis, these two subsystems become 'de-synchronized' resulting in an un-mooring of The Relational, such experience becomes ungrounded (i.e., without logic and language to organize them). Clarke suggests that such 'de-synchronizing' can occur during particularly difficult times of emotional upheaval, such as times of loss and trauma. This aspect of Clarke's work, although grounded in a cognitive theory, reminds me a great deal of Lacanian ideas of psychosis-- i.e., psychosis consists of 'holes' in the ability to use language to organize or make sense of experiences. These concepts tie in with Clarke's original discussion on the 'cognitive bias' towards the rational, i.e., she shows that understanding experience actually relies on both the rational (The Propositional) and emotional (The Relational). In addition, the existence of two subsystems, according to Clarke, is evidence that we are not as 'unitary' as we would like to believe, and that our sense of self is a great deal less boundaried. Clarke relates these two subsystems to the sacred (The Relational) and profane (The Propositional) aspects of our experience.
What is clear in Clarke's book is that she is not looking to dichotomize experiences as clearly delineated into "mental health problems" or "spiritual concerns". Instead, she stresses the importance of "both-and logic", that multiple explanatory models can be used to understand an experience without cancelling each other out. In this way, her work reminds me of the Alcoholics Anonymous conceptualization of addiction, which conceptualizes alcoholism as both a "disease/illness process" and a spiritual conundrum. What is important here is the ethic of pluralism- it is not about arguing for one particular underlying "Truth" to what these experiences "are", but that people should be able to explore many different lenses of their experiences, including the spiritual, if they should desire to. Clarke's book is an accessible, engaging and fun read, which opens up many more questions than it provides answers for, both in terms of mental health, and it terms of how we understand our world more broadly.
Clarke, I. (2008). Madness, mystery and the survival of God. O Books: Winchester, UK.
One goal of mine in creating this blog is to make psychosis research more understandable to the general public. As a former librarian, I have always been interested in understanding the ways knowledge is spread and disseminated, including questions such as who has the privilege of gaining access to certain forms of information and who does not. Too often, important research never makes it into the mainstream media, significantly limiting the audience that can learn from it. In fact, on those occasions when psychological research does make it into the mainstream, it is usually sensationalized or distorted in some way, appearing very different than what was originally presented in the research journal it came from.
Since this post is my first attempt to describe research in clear and accessible terms, I decided to start with a project I did as part as part of my doctoral studies. At my university, all Clinical Psychology doctoral students need to complete something called a Second Year Research Project or "SYRP" (yes, we sometimes pronounce this like the word 'syrup'), as a way to learn how to develop and conduct psychological research. My project, mentored by Dr. David Kimhy, looked at what characteristics or aspects of voices (often called "auditory hallucinations") cause the most difficulties for people. The development of this project came out of the observation that not all people that hear voices have a low quality of life, so there must be something about the voices themselves that leads a person to have more or less problems in living.
For the purposes of the study, the quality or "richness" of a person's life was based on several things, including the quality of their social relationships, their employment status and satisfaction with work, their level of motivation and curiosity about the world, their sense of purpose, and their engagement in the community. We measured this using something called the Quality of Life Scale, a type of interview that can be given to a person and then transformed into a total score (higher scores mean you have a better quality to your life).
In order to understand more about the characteristics of the voices that people hear, we used something called the Psychotic Symptom Rating Scale (PSYRATS). This is an interview which asks people about certain characteristics of their voices, including the frequency of which they hear them, the duration (how long they hear them for at any given time), the location (e.g., inside or outside of the head), their loudness, their beliefs about the origin of the voices (e.g., coming from their own thoughts/mind or an outside source.), the amount of negative content they have, how distressing they are, and their controllability. The interview gives people scores on each of these aspects. For my SYRP, we gave these two interviews (the Quality of Life Scale and Psychotic Symptom Rating Scale) to 35 people who had been diagnosed with schizophrenia or related disorders in order to see which characteristics of their voices impacted their lives most.
So, what did we find? What characteristic of the voices had the most impact on people's lives? We found that people that had a greater sense of control over their voices had a better quality to their lives. That is, control was the most important characteristic, over and above other characteristics such as amount of negative content, the frequency of hearing voices, and the duration.
Why is this important? This finding is important because it means that helping people gain a sense of control over their voices can in turn help lead them towards richer, more fulfilling lives. In fact, there are many ways that people can gain a sense of control over their voices. For example, the Hearing Voices Movement is a self-help approach to voices which emphasizes cultivating relationships with voices rather than trying to get rid of them. Developing a relationship with the voices one hears can shift the power-balance, leading to a greater sense of "controllability". Of course, not all people want to start a relationship with their voices. Cognitive behavioral therapy is another approach, which is based on the idea that people can change their beliefs about their voices, including their beliefs about powerfulness of their voices. If a person is able to shift their perspective about their voices, this can also lead to a greater sense of 'controllability'. For example, a person may come to view themselves as powerful (or more powerful) than the voice they hear.
In sum, it is not hearing voices in and of itself that causes problems in people's lives, it is the way in which these voices are perceived by the listener.
Did you find this post interesting? Leave me a question or comment below. I am also interested in hearing people's personal tips on how they learned to control their voices, so leave a comment if you have any suggestions/tips for others.
** This research study was originally presented as a poster at the International Consortium on Hallucinations Research (ICHR) meeting in Chicago **
We all hear voices: A psychotherapist’s perspective on ‘The Voices Within: The History and Science of How We Talk to Ourselves’
The following is a re-post of a review I wrote back in 2016 for Durham University's Centre for Medical Humanities on Charles Fernyhough's book The Voices Within: The History and Science of How We Talk to Ourselves.
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The Voices Within by Charles Fernyhough offers an engaging and informative look at an aspect of our experience that typically goes unexamined — our thoughts. In fact, the very process of reading the book provokes an uncanny response, as it inevitably forces the reader to pay attention to the experience of their own inner dialogue. Fernyhough directly engages the reader in this process by offering the following exercise:
Now ask yourself some more questions about the thought you just had. Did it sound like a person speaking? If so, was that person ‘you’? … Would you recognize it if it happened again? How do you know that it was your own? (P. 19)
These questions have particular relevance for me — I am a trainee clinical psychologist who works with people experiencing psychosis. My interest in reading The Voices Within was prompted by two clinical questions: How can ‘typical’ inner speech help us understand ‘unusual’ voice-hearing experiences? And how can this inform therapeutic practices for working with individuals experiencing distressing voices?
Fernyhough’s understanding of inner speech is influenced by the work of Lev Vygotsky, a developmental psychologist who viewed the ‘self-talk’ of a child playing as a form of planning and a way to move into physical action. He positions inner speech as an internalization of this self-talk, and sees thought as dialogical, sharing the same interactional styles and features as conversations we have with others. What makes this important for understanding voice-hearing in psychosis, is that although the experience may be perceived as unusual, it is most likely a variant of common human experience. We all hear voices to some degree, since we are all in constant dialogue with ourselves. Fernyhough examines how some of the areas associated with self-authorship of inner speech — such as the supplementary motor area (SMA) — show less neural activation during a hallucinatory experience (described as the brain “seeing” or “hearing” itself). This concept corresponds with the theoretical work of Sass and Parnas, who view the dual processes of “hyper reflexivity,” or exaggerated awareness of the self, and “diminished self-affection,” or the weakened awareness of one’s agentic qualities, as the fundamental disturbances in psychosis (Sass and Parnas 2003). As such, The Voices Within provides a destigmatizing look at voice-hearing in psychosis. Indeed, Fernyhough is keen to compare and contrast voice-hearing in psychosis to all the varieties of inner speech, from the creation of literary characters, to reading a novel, to laughing at daydreamed jokes. Although the primary focus is on thought more broadly, Fernyhough periodically returns to the topic of individuals who hear voices, contextualizing their experiences within the greater notion of inner speech.
Drawing on previous research, much of which builds on the work of the international Hearing Voices Movement, Fernyhough acknowledges that for voice-hearers, it is often not the voicesthemselves that are distressing, but the ways in which they are thought about and experienced relationally. He hypothesizes that our inner speech is derived not only from our own experiences, but also from the ‘thoughts, feelings, and attitudes of the people with whom we share our world’ (2016: 76). This concept is particularly relevant for understanding trauma-informed theories of psychosis, as voice-hearers seeking psychotherapy often experience their voices as hostile, abusive, and domineering. Fernyhough expands upon this concept by asking members of the Hearing Voices Network about their experiences of voice-hearing, connecting the experience to the concept of dissociation. Importantly, in addition to peer-support, this aspect of the book has implications for the psychodynamic treatment of psychosis, a modality often shunned for use with individuals diagnosed with schizophrenia or what is commonly termed ‘severe mental illness.’ For example, theories on dissociation and voice-hearing are compatible with the work of Philip Bromberg, an American psychoanalyst interested in concept of ‘multiple self-states,’ both in healthy development and dissociated self-states resulting from trauma (Bromberg 1996). Bromberg’s approach to therapy is predicated on helping people recover lost elements of their experience, a theory in keeping with Fernyhough’s description of the Hearing Voices approach.
The Voices Within stresses the importance of gaining knowledge by attending to the subjective reports of people who hear voices. For example, in Chapter Eight, we meet Jay, a dance-instructor who can hear the voices of three different disembodied individuals. Fernyhough expands on his own concept of inner speech in these instances, while also acknowledging differences — one of Jay’s voices takes the form of a memory, while other times Jay’s voices cannot be heard, but are experienced as physical presences. Fernyhough describes how Jay is undergoing Cognitive Behavioral Therapy (CBT) to help him understand the emotional and psychological processes that underlie his voice-hearing experiences. One of the key things that Fernyhough highlights is how CBT has helped Jay gain control over his voices. For example, by ‘time-guarding’ so that he will only listen to the voices at a certain time each day. Although many clinicians (particularly researchers) base psychotherapy outcomes on a reduction of voices, The Voices Within shows that we may be off the mark — it is not often about reducing or “getting rid” of voices, but changing the voice-hearer’s relationship towards their voices. To eradicate voices is problematic, firstly because for many people voices have positive qualities, and secondly because silencing them in this fashion seems to be contingent on intentionally inducing a dissociative split.
One of the most important elements of The Voices Within is its interdisciplinary approach — no single perspective or ‘voice’ receives privilege over another, as Fernyhough tackles the subject of inner speech across neuroscientific, theological, historical, literary, cultural, and lived perspectives. Strikingly, the format of the book, as well as the implications of the theory, correspond to one therapy that has been gaining a great deal of attention for the treatment of distressing psychosis: Open Dialogue. This community-based group therapy is guided by a founding principle of ‘polyphony’ or “the co-existence of multiple, separate, and equally valid ‘voices’ or points of view, within the treatment meeting” (Olson, Seikkula and Ziedonis 2014: 5). Perhaps herein lies the crucial element for helping those who hear distressing voices — gaining some measure of inner peace depends on allowing for the inevitability of discord. Within my own practice of psychotherapy, I have found a commitment to the multiplicity of meaning to be essential when working with individuals, as they learn to tell their story and make sense of confusing or painful experiences. In this light, the need for multiple perspectives and communal dialogue about voice-hearing within academic discourse seems essential. The Voices Within offers a significant contribution in this direction.
Bromberg, Philip. 1996. Standing in the spaces: The multiplicity of self and the psychoanalytic relationship. Contemporary Psychoanalysis, 32: 509-535
Olson, Mary, Seikkula, Jaakko, Ziedonis, Douglas. 2014. The key elements of dialogic practice in open dialogue: Fidelity criteria. Worcester, MA: The University of Massachusetts Medical School.
Sass, Louis and Parnas, Josef. 2003. Schizophrenia, consciousness, and the self. Schizophrenia Bulletin, 29(3): 427-444.