Lisa Forestell is a mental health activist and a facilitator/trainer of the Hearing Voices Network (HVN), based in Massachusetts, USA. On the  5.6. Lisa will arrive to Prague in order to participate in a panel discussion on the psychiatric ethos, organized by Institute of Anxiety. She will additionally offer a two days workshop on voice hearing, peer organizations and mental health transformation.

B&A: You have been hearing voices since your early childhood. Can you describe the experience? How did your relationship with your voices changed over time?

Lisa: I am in relationship with three voices that I’ve heard for as long as I can remember. I also experience other voices and sounds, as well as feeling, tasting, and seeing things that others do not. All of these things fall under the banner of the Hearing Voices experience.
When asked about my voice hearing, I usually focus on the three voices as they are often easier for others to understand: One is male and two are female. When I was younger, we were all the same age. As I began to get older, the male voice chose to age with me while the girls chose to stay the same age. He is in his fifties and they are around 5. Unlike many people who have a distinct memory of their voices starting and learn different ways of dealing with their experience, I have always heard them and have always been in relationship with them. I refer to them as companions. They are my friends and my family. While we are generally supportive of one another, we argue occasionally and have gone for periods when we refuse to acknowledge one another. But, mostly, we love and care for one another.
The male voice is a “truth teller.“ He speaks his mind with little filter. He likes to challenge me, support me and play devil’s advocate. Justice is a primary theme for him and he believes that we were fated to become active members of the Hearing Voices Movement. The girls are playful and sweet. They love to sing and often sing to me when I am experiencing times of stress. Within the last several years, they have moved from singing sing-song nursery rhymes to singing more adult music, mostly pop and rock. They are fairly meek and need extra care and support. Sometimes, when the world is being particularly terrible, they are hard for me to find but I can hear them crying. This almost always means that it is time for me to stop what I am doing and care for them, me and what’s happening in my immediate life.

B&A: How did your surroundings react to your voice hearing when you were growing up and later on?

Lisa: When I was little, prior to schooling, my voices and I were pretty much left to ourselves. If adults noticed I was “talking to myself,“ they generally assumed I had “invented little friends“ or some similar explanation for the games and play of children. No one seemed to be all that concerned and I was never confronted or steered away from spending my time the way I chose.
As a result, when I was young, I assumed that everyone heard “extra“ voices. It wasn’t until I was enrolled in school, that I started to catch on. Other children would deny hearing voices of their own and began to tease me. By the time I was in second grade (age 7) I had begun to feel very different than the other children. A teacher took me aside and said that I could no longer bring my voices to school with me and that they would get in the way of my learning. This was a devastating thing to hear. I didn’t know how to leave my voices anywhere and I didn’t want to be bad at school, which is what I heard in my teacher’s comment.
I became extremely withdrawn, that year in school, trying to fit in to something I really didn’t understand. It was in response to the teacher forbidding my voices at school that my voices and I entered what we refer to as “the pact.“ We agreed that my voices would remain silent while I was with other people and we would catch up with each other when I was alone with them.
We remained in this pact until we joined the Hearing Voices Movement nine years ago. My voices still tend to be quieter when I am with others but we’re getting better about “living out loud.“

B&A: In traditional psychiatry voice hearing is often considered a symptom of a mental health disorder. What do you think about this psychiatric model? What kind of other models exist?

Lisa: It wasn’t until the early 1980s that psychiatry even began to become aware of the extent of voice hearing in the general population. As one would imagine, they only came into contact with those who were experiencing distressing voices and had sought help. In an interesting story, it was a psychiatrist, Marius Romme, and a voice hearer and patient of his, Patsy Hage, that were curious enough to change that understanding. After following Patsy’s instincts and creating ways that she could be in conversation with others who heard voices, they reached out to their broader community by way of a talk TV show. Patsy offered her story and she and Marius spoke of how helpful it was for her to be able to talk and listen to others with similar experiences. At the end of the show, they asked for other voice hearers to call in to share their experiences. What they found was that 2/3rds of those that called in, lived in harmony with their voices. It was only 1/3rd of that sample of people who experienced their voices in distressing ways.
That was really the beginning of the Hearing Voices Movement. Since then, a vast amount of research has been done and countless first person stories have been told. There are many, many ways that people understand their voice hearing beyond that of the medical model. Instead of being a symptom of a disordered process, voice hearers are: gifted mediums and empaths, hearing from their loved ones and creators, able to hear spirits or angels, able to receive transmissions from earthly and/or non-earthly entities, for a couple of examples. Many people come to understand their experience as a result of trauma and a creative way the brain seeks to cope with that trauma.
All of these different ways that we understand our experience are frameworks. They are helpful to us so we can organize ourselves around our experience. They are influenced by our cultural teachings. Challenging the framework, itself, in no way supports the voice hearer, so I become frustrated with a mental health system that requires only one understanding. Over the many years that I have been a part of the Hearing Voices movement, I have witnessed many people define their own experience and organize themselves in ways that support them to lead lives they feel are worth living. In contrast, the mental health system overwhelmingly labels the experience in negative ways that lead to increasing distress. Furthermore, people who are supported around developing ways to compassionately cope with their experience do much better long term than those who are given a pharmaceutical and other traditional interventions.

B&A: Can you tell us about your experience with the mental health system? How did it affect you and your voices?

Lisa: As a young adult, in my college years, I was referred to mental health services following a sexual assault. I was in a great deal of distress and was finding life overwhelming. I really wanted help. I was diagnosed and told that I would receive that help. I should make note that I never reported my voice hearing during the years that I was in services. I had endured years of being a closeted voice hearer, watching others labeled as schizophrenic and crazy. Over the years, I received several other diagnoses, many prescription medications and a ever growing list of professionals who never spent more that 50 minutes with me at a time. Many of the people were empathetic, several were helpful but none ever looked at me as a whole person who had experienced great trauma that affected how she was able to move through her world. It wasn’t until I began to see myself that way, that I began to move away from the clinical system. I knew that I would only feel better if I could find ways to live my life that I could be proud of. I wanted new labels: home owner, wife, mother, best friend, co-worker and more recently, international trainer and speaker. I have left the labels of the system far behind. My sense of agency and liberty has returned.

B&A: You use the term ‘psychiatric survivor’ when you speak of your experience. What does it stand for? And why do you think language is so crucial within the context of mental health activism?

Lisa: Many people who have been labeled by the mental health care system and received years of “treatment“ based on that label only to find that they need to move away from that system of care identify as “psychiatric survivors.“ Many of us feel as though we were further traumatized by that system and have had to heal further wounds due to the system’s inability to respond to us in human ways. Most of us came to realize that the healing we sought would not be provided by that system. The term is heard most frequently in activist communities but is becoming more prevalent among those who have chosen to work as “peer specialists.“
Language in mental health activism is extremely important because it has been language that has been used against us. Psychiatric and clinical language sets are almost entirely deficit based. Mental health patients are routinely subjectively labeled with diagnoses that are not only hard for a lay person to understand but form a large generalized idea of who that person is. This allows everyone that comes into contact with that person to continue the generalization and dismiss their actual personhood. This invariably affects a person’s sense of self and sense of agency, leaving them demoralized and further distressed. While it may not be the intent of clinical personnel to have this impact on their patients, it is a very real dynamic that plays out in our services.
Moreover, language sets that are deficit-based and limited in understanding, context and availability to any mutual relationship building can only result in hierarchical relationships where the clinician knows all and the patient can only act as a passive participant. The language used by the mental health field is one such language set.
To counteract the messages that we have received through mental health services, people involved in activism have worked to change the language sets that are used. We do not use clinical language. When others do, we often ask what they mean by the words they have used so that we can better understand them. When reflecting on people or situations that have been framed in a deficit-based way, we respond by pointing out the strengths that have gone unmentioned. Using everyday human language is an example of this language set.

B&A: How do you think psychiatric system reflects hierarchical power structures in society? Can you tell us something about the socio-political factors affecting these structures?

Lisa: As with many of your questions, this one could require an entire paper to respond adequately, but I’ll give it a try.
I witness the psychiatric system to be one that has been created almost entirely by white men, most of whom have had self-serving agendas. Early psychiatry had legitimacy issues and was forever trying to prove that it was as good as other professions like the medical field, for instance. As it became established, it sought to compete more directly with that field, so over the years, it expanded definitions of what was disordered and what wasn’t. The profession created the Diagnostic and Statistical Manual as proof of its worth. The DSM I was published in the 1930s, was 132 pages and listed 106 conditions. The DSM V was published in 2013 is 947 pages and lists over 300 conditions. These publications are created by committee within a political process. Caffeine dependency and grief are now among the conditions that psychiatry considers disordered. These publications are a compendium of subjective definitions and lists of symptoms for assumptive conditions, none of which have ever been scientifically proven. Regardless, the DSM and its practitioners are often considered experts in their field. Their opinions cross into the legal field, becoming law.
Furthermore, the inherent subjectivity of these texts is not able to cross cultural boundaries. What is acceptable in one culture, may not be in another or is even understood in an entirely different way. Psychiatry does not offer any flexibility around these differing aspects of humanity. It is not culturally competent.  Because its framework comes from white culture, complete with its cis patriarchal hierarchies, it is this standard to which all patients must be measured. As a result, people of color, non-binary, gay, queer, trans and female identifying people make up 78% of the patient demographic in the US.

B&A: There is a growing global trend of employing “peer workers” in psychiatric teams. Why do you think of this so-called progressive approach can be also problematic?

Lisa: This one requires another paper but I’ll synopsis as best I can. If you identify as a “peer“ from within the mental health world, you are self-identifying as a patient, as a disordered personality. You are identifying from within a marginalised class. While this class of people may be “invited to the table“ for purposes that benefit those in power, history tells us that that power will never be shared. Creating another strata of psych worker is only adding to a power structure that is already too bloated to be self critical. This position is currently being co-opted around the globe with peer workers, who came to the work to support fellow patients, now being required to exert power over them. They add opinion to case notes, hand out meds and control finances. They are mini mental health workers and they are paid less than those doing the work before they were introduced.
Creating community-based networks, that are not controlled by mental health providers, that exist for no other reason than to support one another in nonjudgemental ways may be a better long term way to offer this desperately needed human connection to those who are receiving psychiatric services. HVN-USA lists over 110 groups operating nationwide both in community and mental health settings. We are also involved in research as well as training.

B&A: Thank you and we look forward to continue our talk in Prague.