How We Started the Bay Area Hearing Voices Network

Editor’s Note 11/9/24: This article has been revised by the author to provide credit to Wildflower Alliance, Will Hall, Dina Tyler, and others for their leadership role in shaping the Bay Area HVN.

Around 14 years ago my son told me he was hearing voices.  Like many family members I was mystified, startled, and clueless about this experience so I turned to mental health professionals for answers.  They offered the prevailing wisdom about voice hearing: that he was basically out of control, his voices were dangerous, and that I had to “babysit him 24/7” to stop him from acting out on what he was hearing.

After one difficult night, we went to a local mental health crisis center.  Out of fear more than anything else, he made angry statements to a mental health care worker.  Their response: they determined he was a danger to himself and others and called the police.  He was escorted him out of the clinic, handcuffed to a gurney in an ambulance, and taken to our county’s mental hospital.  Probably the worst day of our lives.

When I was finally permitted to see him three days later, he was lying on the ground in the hospital’s rec room, alone, shaking from the side effects of the Haldol they had given him.  I bent down to comfort him and yelled for help.  A nurse finally showed up and gave him a shot to soothe him.  So began our journey through our county’s public mental health care system.

Three years later, more hospitalizations, and boatloads of drugs, nothing had improved.  He was still hearing voices and was miserable.  Now living with us, we were miserable with him though he continued to take medications as ordered by his doctor.  They did nothing for his voices or his anxieties.

I was still a believer in the medical model.  I told him he had an illness like diabetes and that taking medications were how to treat him.  I tried to fix him by talking him out of his voice hearing experiences.  I tried to convince him the voices were not real.  But it didn’t help.  Out of desperation we started to look for alternatives.  I read Anatomy of an Epidemic by Robert Whitaker and discovered the Hearing Voices (HV) movement.  At a workshop led by HV trainer Ron Coleman, I learned an alternative approach to his voices.

The first thing I learned was to respect my son’s experiences, that the voices were real.  This was huge for me.  Instead of seeing his voices as a symptom of an illness, or a threat to my son’s sanity, or a figment of his imagination that I needed to talk him out of, I adopted the idea that they were real.  I started listening to him and the content of his voices.  That led me to looking at my own responses to them.  I discovered I was nearly paralyzed with fear and anxiety about them.  Out of desperation I searched for a support community of others who were also dissatisfied with our current mental health care system.  On a leaflet at a coffee shop, I discovered a group who were looking for the same thing.

The Bay Area Hearing Voices Network was founded by voice hearer Dina Tyler in collaboration with another voice hearer and Heath Hodge, after they met at a workshop organized by Hodge and led by HV trainer Peter Bullimore.  By 2014, group of voice hearers, family members and clinicians had formed under the BAHVN umbrella, leading up to my working with Stella Allison and others in the local community to start one of the first family and friends groups informed by HVN principles.

We started meeting in a clinic where one of our members worked.  We had one thing in common: we were all searching for alternatives to the prevailing psychiatric/medical model dominated by psych meds that we felt had failed us and our loved ones.

Even though there were differences based on our lived experiences, what united us were shared values from the national hearing voices movement, HVN-USA.  Chief among them was the value that there is no assumption of illness of our loved ones; the voices themselves are not the problem; hearing voices can be understood as a natural part of the human experience; and diverse explanations are accepted for origins of the voices.  This transformation did not happen overnight and was not easy.  We struggled a lot because we were creating a new, unique, and empowered model network composed of voice hearers, family members, and clinicians.  We were also challenging the prevailing mental illness narrative espoused by NAMI, most psychiatrists, and the pharmaceutical industry.

We found it was important we to look at our language.  This included stepping away from diagnostic descriptions that limit our understanding and interpretations of experiences and realities different than our own.

Discarding these labels helped us to bridge differences within our small group.  As voice hearers many had been hospitalized against their will by their family members and so carried anger and suspicion about working together.  Conversely, as family members, we had been frightened by our loved ones’ experiences, actions, and anger, which were often directed at us.

By listening to each other and having unity around what we stood for as an organization we gradually learned to trust each other.  As family members, this was not unlike the struggles we experienced in our own families as we worked through our differences with our loved ones.  Actually, this struggle turned out to be a good model for our family and friend groups as these issues of trust, acceptance, and understanding between family members/caregivers/and siblings and voice hearer come up all the time.

We decided to put our practice to the test and started an adult, drop-in hearing voices group.  The group was free, held in a community drop-in center, and was open to anyone who heard voices or had visions or other unusual experiences.  It was led by two of us who were trained facilitators in the hearing voices approach and had lived experiences.  Both facilitators were not paid and volunteered their time.

To start the group, we agreed on a list of hearing voices group values we learned from the HVN-USA charter.  These values were explained and repeated at each meeting and helped to ground the group in the HV approach.

They included:

• No assumptions of illness:
• challenging society’s norms on what was “normal”;
• Respecting our loved ones’ experiences;
• Honoring we are all experts of our own experiences and are free to interpret our experiences in any way;
• Taking ownership of our feelings as much as possible;
• Using ordinary, common language:
• Commit to undoing stigma and stereotypes of voice hearers and others with unusual experiences whenever they appear, whether in person or in society as a whole.

Like many in-person HV groups, attendance was small at first but started to pick up when word got out.  This was the only HV group in the Bay Area region, a population of ten million.  Led by volunteers, I felt this model was not sustainable in the long term.  I felt that facilitators needed to be paid not only as a symbol of their value to their community and their work, but by paying facilitators it helped insure the group’s longevity.

Facilitator training was also important, especially if we wanted to start more groups.  In partnership with a statewide integrative mental health program that valued the HV approach, we worked with the Wildflower Alliance to provide a three-day Hearing Voices Group Facilitator using a curriculum they had developed based on HVN-USA standards and values.  This followed on the heels of earlier HV trainings provided by Will Hall and Dina Tyler and supported us to take the next steps in our development.  This served as a springboard to allow us to start more groups, including one at their SF clinic.

We learned to use VCVC (validation, curiosity, vulnerability and community), a framework developed by Wildflower Alliance and used across many of their trainings.  We learned to use it with each other, with our loved ones and in our groups.  The training also gave us confidence and support that we too could step into leading groups.  They supported us to validate each other’s experiences and, as family members, take ownership of and express our feelings and fears instead of focusing so much on our loved ones’ experiences.  We learned to value just listening to our loved ones while cultivating and expressing our own curiosity, empathy, and vulnerability.

For many of us, this was a very different approach from the therapy groups we had attended.  As facilitators, we consider ourselves members of the group and modeled these values and encouraged group members to adopt them as well.

At this time there were around six of us in our network and we decided to become a certified non-profit, a 501(c)3.  This has helped us apply for grants, fund more trainings, and expand the number of HVN groups we offer.

Our local mental health agency agreed to pay facilitators out of the resources from the state of California Mental Health Services Act,  otherwise known as the “Millionaire Tax.”  It was passed by California voters to tax millionaires with proceeds earmarked to support California’s mental health programs.

Our first contract funded one adult HV group for one year.  It still meets every week for 1.5 hours and pays two facilitators.  It’s an HVN-USA chartered group following HVN-USA values:  No notes or names of participants are taken, and facilitators are HVN-USA trained and have lived experience.  The mental health agency asks us to keep track of attendance and at the end of the year provide feedback from participants about the group, demographics, its effectiveness and impact on their lives.

Over the years, our groups have grown.  We now offer four weekly online adult hearing voices groups, two family members groups, and a “game night group.”  Voice hearers have created a community.  When they join a HV group they find a community of people who, like themselves, hear voices or have unusual experiences.  Often, for the first time, they feel safe to talk about their experiences and reach out for support.  At least in this group, their world is a less threatening place.  Outside the group, they can also reach out to people available as sources of support during good times and bad.  Many, to their great relief, are able to come out of isolation for the first time.  This is in stark contrast to hospitalization, which isolates them from family members and friends.

In the family group, we feel validated and learn how to communicate with our loved ones from a place of curiosity, loving kindness, and compassion.  I remember trying to talk to my friends and other family members about what we were going through.  We felt isolated and wary about talking about our struggles and felt cut off from support and contact from our relatives.  In our family and friends groups, we come out of isolation, often for the first time, in a group that provides a safe place to talk about our feelings, including our fears, helplessness, and grief.

All our groups are now online.  Attendance varies to around 10-15 people each night.  Our non-profit board has expanded to 15 people and we meet once a month.  On a given week nearly 60 voice hearers and family members attend our HV groups.

Our future plans include expanding our outreach to legislators and decision makers so that HV groups become an integral part of the SF Bay Area mainstream mental health care options for voice hearers and family members.  We are engaged in a marketing effort to start a hearing voices education center that can reach high schools, universities, and mental health clinics.  We are also involved in a social media effort on Facebook, Reddit, and Instagram, to help us connect with Transitional Age Youth (TAY).

Collectively we want to join with others to create a national political voice of voice hearers and family members that challenges and provides an alternative to the prevailing medical model, medication based, mental health care system, as well as advocate for an end to forced hospitalization and abusive treatment to those of us with mental health challenges.

I now co-facilitate two weekly online family and friends groups—one sponsored by Wildflower and the other for our local community—and have helped build the Bay Area Hearing Voices Network into what it is today.  Nearly 2,000 family members and voices hearers attended our six weekly hearing voices groups last year.

My son is doing well.  He works nearly full time and has learned to manage his voices.  He is also a proud father with a son who recently started college.

His journey has also allowed me to uncover and heal my own trauma and given me the interpersonal skills to communicate with him in a compassionate way.  I have learned to validate his experiences, approach him and his voices with curiosity, open up to my own vulnerabilities, and, with our network, create a supportive community for myself and our family.

For more information or to join one of our groups, go to our website: www.bayareahearingvoices.org