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Volume 51 Number 3 Summer 2018
Edited by Tehseen Noorani
Editor's note: This issue's contribution comes from 'Sarah', who lives in Michigan and hears the voices of Broken Siri and the Jerk Squad. Sarah describes the onset of her distressing experiences, encounters with the psychiatric system, and coming to find the Hearing Voices Network (HVN). The HVN satisfies all seven of Humphrey's criteria for mutual aid groups (see this column, TCP volume 50, issue 4). It has spread rapidly, building its own network of groups independently of mainstream healthcare services. Understanding voices as meaningful, the HVN advocates not to 'shoot the messenger' but to 'decode the messages' - a radical alternative for this most-stigmatized and stigmatizing of experiences.
The Hearing Voices Network: Finding Hope in Peer Support
Written by Sarah, Hearing Voices Network group facilitator, Michigan
Many people who are in extreme distress and end up hospitalized leave without adequate support. It is especially hard for people who experience unusual sensory perceptions like voice hearing, visions, unusual beliefs, or altered states like psychosis to find the help they need. It often becomes isolating, as people are encouraged not to talk about their experiences. In 1987, Dutch psychiatrist Dr. Marius Romme listened to one of his voice-hearing patients named Patsy Hage. She wanted to talk to other people who were experiencing similar things. Soon enough the Hearing Voices Network (HVN), part of a larger Hearing Voices Movement, was born, where voice hearers can talk to one another, providing mutual support. The HVN views voices as a meaningful, despite unusual, human variation. Since its formation in 1987 it has spread to many countries around the world, in the everyday community, in closed psychiatric hospital wards and prisons. Local hearing voices groups (HVGs) provide non-pathologizing spaces where it is safe to talk about what one experiences and to share coping strategies. In its best form, an HVG can hold hope for those who might not have any left.
If only I heard of the words “peer support” or “mutual aid” when I first started hearing voices. I was in great distress, perpetuated by extreme fear. I thought that my life was in danger, and that people were spying on me and out to get me. I became obsessed with finding “hidden cameras” and “recording my voices” so that I could “prove” what I thought was happening. I needed help, but the help that I ended up getting was very traumatizing. I needed to know that I was safe, and desperately needed compassion. Unfortunately, my treatment plan did not start from a place of trust. I was taken to a city that I have never heard of, an hour away from where I was going to school. I was forced to swallow different pills that made me feel strange. Also, I was held down and injected with something which initially wasn't explained, beyond 'doctor's orders'. Some of the medication that I was given gave me awful side effects. I thought that I would never make it out of the institution alive. My voices were telling me that the staff were going to kill me. I did not trust anyone.
After being released from the hospital, I was still psychotic, but hid it well enough so that when I was out in public, I did not act too strange. I moved back with my family and returned to my old job. I lasted in the world for maybe a little over a month before I was hospitalized again. My voices were telling me that I had ESP. In my mind, I thought that I could get a diagnosis of ESP, to replace the diagnosis I had been given and really hated, schizophreniform. Things did not go as planned when I walked into an ER and asked for an ESP diagnosis. During my second hospitalization, I made a pact with myself that no matter what happened to me, I was never going back to a psych hospital again. In the hospital, I learned that if I wanted to avoid going back, I couldn't talk about the people that I thought were spying on me. Because I didn't talk about what I was experiencing, no one thought anything was off. I would go to work, and for many months afterwards would go home and squeeze the heck out of my eyebrow, thinking that there was a camera implanted in my head. I was afraid to cut it out because I thought that in doing so, I would end up in the hospital again.
My life changed forever when I came across Eleanor Longden's Ted Talk “The Voices in My Head,” which spoke about the existence of peer support and the HVN. I was apprehensive when I went to my first meeting since I was not sure what I was walking into, but what I discovered were other people who had similar experiences as me. I learned that there were places and spaces in this world where it was ok to talk about hearing voices, experiencing visions, unusual beliefs, or other sensory perceptions that people sometimes experience but don't really talk about. While finding the hearing voices movement and seeing Longden's Ted Talk was helpful for me, this may not be the case for everyone with similar experiences because surviving, coping, and recovery all look different for each individual. Some people in HVN view Longden's type of recovery as unattainable. As a result, I can only speak from my own experience.
Something that works well with our HVG is our pro-choice stance on psychiatric medication. Most people in our group take medication, and we encourage people to keep doing what works best for them. We never tell anyone to stop taking their medication without first consulting with their doctor but are open to people using other options if medication was not effective.
After several months of going to my HVG, I learned that there was a HVN facilitator training nearby. The training was free to attend, but participants were selected from applicants who had to apply by writing a short piece about why they wanted to attend. What was really cool about the training was that our student group was about a 50-50 mix in terms of people there with lived experience and professionals who wanted to learn how to make a real difference in the lives of the people they worked for. After my negative experiences with my hospitalization, it was extremely reassuring to see so many caring professionals who wanted to better understand what people with lived experience of extreme distress and altered states including psychosis actually go through. In the three days that we came together as students, we learned so much information about the history and values of the HVN, and about the lived experiences of our two instructors. We ended the training having mock HVGs where voices hearers took over and shared parts of their stories with everyone.
My favorite part of the training was when we broke into groups of three. One person was supposed to be interviewing for a job, one person was supposed to be the interviewer, and one person was holding up a roll of wrapping paper up to the interviewee's ear whispering into their ear, acting like a voice that only they could hear. This activity gave all the professionals who did not hear voices a first-hand experience at what it might feel like for someone to hear voices. Also, it put into perspective for them how hard interviewing for a job could be for a voice hearer, because the voices can be really distracting. One other thing that really stood out throughout the course of the training was when a professional gave the rest of our group an example of patient mutual aid. He was working on a psychiatric unit and a patient was frozen in a catatonic state for hours in a position where it looked like he was holding something. It took another patient to come along and tell the guy in the catatonic state that he will take over and hold that thing for him. When the other patient took over in holding this thing, the guy who was catatonic got up and went to eat dinner.
I started supporting my HVG as a facilitator shortly after the training. Our group was started by a psychologist in Michigan. She started our group in 2011 despite having no additional supports. For the first couple of years she would sit in the room holding space for our meetings. Often only one person would come to the group, while sometimes it was just her in the room. Eventually more people started coming. Every HVN group runs a little differently – ours usually starts with everyone going around the room and saying their names. We then repeat our two ground rules of confidentiality and the importance of mutual respect - even if we don't agree with each other. Then the conversation usually goes in whichever direction people take it. Some groups have more structure, but ours lets people talk about what is on their mind. As facilitators, we sometimes check in with people to see if they had a chance to share, and we might try to redirect the conversation if needed.
Our group's biggest challenge remains that we have people from many different backgrounds coming together to share with each other some very personal aspects of our lives. Sometimes there are differing points of view present amongst the people in the discussion, ranging from things related to where voices come from, what coping skills work for different people, and what our views on religion or spirituality are. As a facilitator it is sometimes challenging to balance all points of view and to provide all people with the right support. Learning how to become a good facilitator was a learning process. I've made facilitation mistakes before, but now I know to try to handle certain situations differently if they come up again. For example, I learned that it's important to check in with people who are quiet to make sure that everyone who wants to share has a chance to do so. Sometimes it's important to politely stop a person who is sharing so much that they are not leaving any space or time for other people to talk. I have learned that what I consider to be validating for me is not always what others need as validation. As a result, I now know that it is important to acknowledge how hard it is for a person to talk about certain things and to give them extra support beyond what I might need. Also, I learned to ask people questions about pressing issues that they might have brought up in previous meetings to see what has happened with that situation since then.
One key principle of the HVN is for groups to be as user-run and user-facilitated as possible. While that is the ideal situation, in reality the only way that an HVG often initially starts is if a professional starts it. In our HVG I see it as a benefit that I can co-facilitate the group with a psychologist. She never comes to our meetings as the sole authority in our discussion because she is a professional and the rest of us are people with lived experience. With where I am in life, it is helpful to have her be the public contact for our group because there is less pressure on me to be fully 'out' about my lived experience in my community and day to day life. For a person with lived experience to start taking on a role in supporting and facilitating their group, they have to feel ready. My guess is that they probably would be a person in the group who has found some coping skills and has learned to deal with enough challenges of their own lived experience where they feel comfortable taking on a helping role. Some ways that a professional can take over an HVG would be by not listening to the people who hear voices, or by telling people what they need to do. While this may possibly be a problem for other groups, I am glad that this has not been an issue in ours. It's also helpful to have two facilitators because if one is not there, the other can facilitate. Also, while my co-facilitator is a professional, she still comes to the table with her own personal experiences which help her relate better to some people in our group compared to me.
While my HVG is a great example of peer support and mutual aid, it is not the only option out there in today's world. Over the years I have learned about other great examples of peer supports which provide mutual aid, including online support groups on Facebook, the Icarus Project, and Intervoice, a part of the overall international hearing voices movement. The World Voice Congress is the annual meeting of people from around the world who are all a part of the hearing voices movement. Being in such a large crowd of voice hearers and professional supporters is an amazing experience! It feels wonderful to meet other people who have experienced similar things from around the world, and to see just how huge and supportive the HVN really is! The next World Voice Congress is coming up in September 2018 in the Netherlands. I also went to another peer-run conference last summer, called Alternatives. Alternatives focus on all peer aspects related to mental health. At Alternatives, I discovered the existence of peer respites, places where people in crises can go as alternatives to a hospital, and 'warm lines', call lines where people can call if they are in distress and just want to talk to someone without calling a crisis line that will connect the person with emergency services. It makes me happy to see so many different options involving peer support and mutual aid because when I was in distress they were unheard of in my area.
Usually peer support takes place outside of traditional mental health settings, but sometimes it makes its way inside them. I find it amazing when there are HVGs on closed psychiatric units in the UK and in Massachusetts in the US. The group might start out with volunteers with lived experience coming and working with hospital staff to run the group. Over time, some hospitals let peers with lived experience run the group independently. While it is still rare in today's world, when hospitals hire peers without compromising the peer role to help provide support for patients, it's a sign that things are moving in the right direction, to a more patient focused treatment plan and to a shift in the mental health care paradigm.