Below are excerpts from a talk given by Dina Tyler — a psych survivor, family counselor, and cofounder of Bay Area Hearing Voices, among others — at UCSF Grand Rounds last month.
“I was and still would be non-compliant. I’ve spent my life creating compassionate alternatives to the traditional mental health system because my hospitalization was really bad. I would never ever want to seek help in a psychiatric hospital ever again. I’ve seen over and over that what happened to me happens again and again and is completely normal and common. Even today, right now, there are people being traumatized in psychiatric hospitals right here in the Bay Area. I know because I’ve talked with many patients, families, and advocates in the area for years. So this isn’t just a Dina Tyler story. This isn’t just a plea from my perspective. This is a story of many, many patients, and the perspective of an international movement of patients, families, clinicians, researchers, legal advocates, and disability rights activists. This is a story of normalized violence and human rights violations, and a plea for how we can all choose to no longer participate in it.
. . . If I had been surrounded by people who could help guide me through the withdrawal and teach me how to prioritize getting sleep, by people who were curious instead of afraid, I may have been able to get through this without the need for hospitalization. That maybe if I and the people around me could have been helped to see that there was some significance in what I was proclaiming, that I could actually do something meaningful in the world, something with impact, something with power to affect change — was that so crazy? Or did it come true?
I had what was labeled as a ‘manic episode’ — more evidence for my ‘illness.’ Yes, I had been up for five days without sleep; I guarantee you anyone in this room who stays up long enough will go psychotic and manic. It is not an illness; it is a stress response. Maybe they should have asked me why I couldn’t sleep; maybe they should have helped me understand withdrawal effects and learn how to take better care of my sleep.
So I had this vision; it would have been incredible if I had been supported, but instead it became the evidence that I was ‘ill’ and needed to be hospitalized. I wasn’t suicidal; I wasn’t starting fires; I wasn’t threatening to kill anyone; I wasn’t committing crimes; I got really excited about something I figured out. That was it.
. . . After experiencing such dehumanizing treatment there is no amount of convincing or coercion that could ever make me want to go back voluntarily to a psychiatric hospital. For years I felt the threat from family members and treatment providers that I would be rehospitalized if I came off my medications or for any other number of reasons. Since there are so many of us who would never want to be involuntarily hospitalized, I have spent my life trying to create alternatives to any forced treatment.
There is a problem with the design of what we call ‘care.’ We always need to look at the design when we’re not getting the outcomes we want and refrain from blaming it on the patient when they refuse our services. We must consider the possibility of iatrogenic harm: harm that is caused by the treatment. My refusal to seek ‘treatment’ was called a ‘lack of insight.’ This is an incredibly dangerous and offensive clinical trope that has been gaining traction over the last decade. There is even an unproven myth often presented as fact — similar to the rise and fall of the ‘chemical imbalance’ theory — called ‘anosognosia,’ something that is studied in brain injuries that is being falsely attributed to mental illness — that someone ‘lacks the insight’ into their condition, that they are so ‘ill’ that they do not know that they are ill, and that this is used as an explanation for why people refuse medications and conventional treatments. This idea of lack of insight is dangerous because it assumes that people do not know what is best for them and that they can be ignored, and another person gets to decide what is best for that person. ‘Anosognosia’ is a loophole, a trap door, an exception, that lets in one group of powerful people to step on a group of vulnerable people.
What is it truly? The idea that a person has a lack of insight arises between two people who are having a disagreement: two different perspectives, different ideas about what is and is not helpful. Humans have had disagreements over belief systems for a very long time. If we look at how opposing belief systems have contributed to the amount of violence and oppression — from arguments at a family dinner table to countless genocides and brutalities on this planet — we know that there is no easy solution to proving who holds the truth. ‘Psychosis’ is a disagreement over what is reality. Psychosis is often a disagreement over belief systems. If you tell the person that what they are experiencing is not real — like hearing voices is ‘just’ an auditory hallucination — it doesn’t make their experience go away. You just become a person they cannot talk to about what is really going on. It simply leaves them to be alone with their experience.
By a show of hands, has anyone here ever had a song stuck in your head? Well, that’s an auditory experience that no one else can hear. We all can experience some degree of auditory hallucination. The research by Romme and Escher that spawned the international Hearing Voices Movement showed that many people who hear voices are managing the voice-hearing experience without any need for psychiatric interventions, and that hearing voices is not a sign that there is something inherently wrong with you that needs to be eradicated. And actually across different cultures, voice hearing can be seen as a normal part of human experience. Here is a fantastic study of the Maori indigenous people of New Zealand and how what gets labeled as ‘psychosis’ by Western doctors is actually understood and held well within their spiritual beliefs. I also recommend the documentary Crazywise for anyone who hasn’t seen it.
. . . This is how we can hold crisis as a potentially transformative experience in the life of the person in front of us. There is always a possibility that it could provide some meaning and purpose to the person’s life, maybe even a spiritual awakening, or that there could be much-needed growth and learning that sparks a change in how they want to live their life. Growth is not usually a blissful experience. From the outside looking in, and even for the person going through it, it can look very painful. And of course, our first instinct is to try to stop the pain and discomfort at any cost; but this isn’t always the best response for the long-term outcome.
. . . If you really ask those of us who were struck with quote unquote ‘madness’ about the content of our messages, there is often a common theme of somehow wanting to save the world. That those who are ‘mad’ may represent transcendence: being outside the social order and able to see beyond it. And it is not uncommon that the savior is viewed first and foremost as a mad person or a fool.
. . . We need to ask people why they are non-compliant. We have to acknowledge the anger of those that feel harmed by this system. It is not a lack of insight, it is trauma. Trauma caused by the treatment. Force or coercion is not the answer. But the answer is understanding why people feel this way and designing a different kind of care.
. . . No one person holds the ultimate truth. There is always a bigger picture. There is a purpose to different perspectives. There is a purpose to those that we think of as ‘fools.’ It stretches us to grow to see beyond our own narrative, to learn from our own ‘foolishness.’ Those who actually lack insight are those who do not try to see from another’s perspective, do not try to understand the context or bigger picture of what is going on for a person in their life, those who simply reduce everything into ‘these symptoms mean this, thus the person must do this.’ ‘Psychosis means that a person must take medications.’ This is not truth.”
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