Editor’s Note: The Hearing Voices Network (HVN), an international movement of and for people who hear voices, see visions, or have other unusual perceptions (with or without emotional distress or a psychiatric “diagnosis”) has begun offering an online support group specifically for family and friends of people with these experiences. Here, co-facilitator David Adams explains the history and philosophy of HVN and the role of the group in its work. If you know a voice hearer and you would like help navigating the best way to support your loved one, this essay serves as an invitation for you to join the online family group.
The origin story of the Hearing Voices movement is a story of rebellion. A courageous Dutch woman, Patsy Hage, grew exasperated with her psychiatrist’s reluctance to discuss voices she alone could hear. Her radical idea: Instead of dismissing the voices as hallucinations and medicating them as symptoms of schizophrenia, perhaps the two of them should listen to her voices and consider what they might mean? You believe in a God you cannot see or hear, she reminded him, so why not listen to voices that I do hear? Confronted with this challenge, the psychiatrist had the good sense to set aside his medical training and listen to Patsy. Together, they reached out to other voice-hearers to start collecting stories and organized a call-in television show that produced a flood of responses. They founded the Hearing Voices Network later the same year, 1987.
The next year the Hearing Voices movement expanded to Manchester, England. It has thrived in the United Kingdom, which has become its unofficial home. The key word here is unofficial, as one would expect from a rebellious, grassroots movement, yet it has increasingly infiltrated and influenced British institutions from prisons to hospitals and universities. Reflecting such influence, Durham University, with funding from the Wellcome Trust, is currently undertaking an ambitious, eight-year interdisciplinary study called Hearing the Voice. This endeavor is not a single study but an impressive collection of events, documents, and projects including the recent launch of a new online resource, Understanding Voices. In addition to the UK, about 30 other countries have loosely organized “networks” of local voice-hearer groups, and these national networks collaborate via Intervoice, an international charity registered in the UK. This umbrella organization succinctly disavows its authority: “Intervoice aims to support the movement, not lead or govern it.”
I have been drawn to grassroots movements throughout my life, from trying to form a union with mistreated coworkers at a local business to cooperating with other parents to opt our children out of standardized testing, and I have found these initiatives prove short-lived or soon require central organization and leadership. The Hearing Voices Network (HVN) is remarkable for lacking central control or top-down administration, remaining after so long—over 30 years!—a radically egalitarian movement, its network of self-governing local groups working from below like a rejuvenating mycelial net. This stunning feat alone makes it worthy of study and respect.
Spreading HVN to the United States
The United States has been very late to join the movement. The national network, HVN-USA, did not form until 2010, at which point only a handful of local groups existed. Trying to make up for lost time, a local peer-support organization in Massachusetts has assembled a team to travel the country training HVN group facilitators. This spirited group of activists is in the process of changing its name from The Western Massachusetts Recovery Learning Community (WMRLC) to The Wildflower Alliance. With a boost from Mount Holyoke College professor Gail Hornstein and The Foundation for Excellence in Mental Health Care, the WMRLC has begun, along with others, to help fill in the desolate expanses on the map of the country’s locally organized HVN groups. The United States now has over 100 local groups, though they are distributed unevenly; the movement remains predominantly bicoastal. Two years ago, Ohio State University, where I work, hosted a WMRLC training for HVN facilitators, and I subsequently started and have helped facilitate the first HVN group in central Ohio, a state still woefully underserved.
Online Support Groups: The Next Step
To serve those not within range of a local group, the WMRLC’s Caroline Mazel-Carlton and Jeannie Bass began to develop innovative online HVN groups in 2016. And now the WMRLC is launching the first-ever online HVN group for family members and friends of those who hear voices, see visions, or have other experiences of non-consensus realities. Cindy Marty Hadge and I are serving as co-facilitators. Cindy is Lead Trainer for the WMRLC and a voice hearer who has facilitated HVN groups for years. She is also a parent and has supported her five children through a variety of extreme experiences. I am a co-founder and now group facilitator for the Central Ohio Hearing Voices Network. I am also a son, sibling, partner, and parent who has spent over four decades in a family with sharp disagreements about which voices matter.
As an HVN group, we strive to adhere to the values laid out in the HVN-USA charter, but for a group of family members upholding these values is likely to involve some unique challenges. I mentioned the rebellious roots of the movement, and sometimes the ones against whom one must rebel are one’s own family members, placing them occasionally on the wrong side—or on both sides?—of the rebellion.
Another challenge: One of the fundamental principles of the HVN is that “the person having these experiences is in the best position to decide or discover what they mean” and thus each person must “not try to speak for” another. In a family group, where many members are invested intensively in the experiences of their loved ones, this value becomes more complicated and, I think, more nuanced to uphold. At the very least, these challenges show why having separate support groups for voice hearers and family members is important: We are freer to explore the meaning of our experiences with loved ones if the loved ones are not present—and this holds as true for family members as it does for voice hearers.
The challenge for a family group will likely be for members to move past speaking about our loved ones to find or imagine the space where we ourselves are liberated. This would address both complications at once, making clear that friends and family members can indeed join the rebellion once they recognize they do so out of self-interest, not as “allies.” Too often the concept of ally serves primarily to make the ally feel virtuous while paradoxically marking the ally’s distance from the marginalized group they wish to support.
A Movement for Social Justice
At first the HVN may seem exclusive—generally one is not welcome at a meeting if one does not have “lived experience” of voice-hearing or some other “non-consensus reality.” When one looks a little deeper, however, the movement proves radically inclusive, giving us all reason to get on board. A new revision of the HVN-USA Charter released last summer articulates and extends the movement’s political underpinnings, evident already in Patsy Hage’s righteous anger towards her psychiatrist and the medical profession. Here is the new passage transforming the charter into a manifesto:
“[T]he Hearing Voices Movement is a part of a social justice movement that intersects with other movements and marginalized experiences. People’s experiences with systemic oppression are accepted as real, and there is a commitment on the part of the group to interrupt words or actions rooted in racism, sexism, ableism, homophobia, transphobia, psychiatric oppression and other types of systemic oppression.”
This passage shrewdly changes the word “intersectionality” back into a verb (intersect) and gives it an optimistic application. Intersectionality is an ugly-sounding academic term for an ugly truth: Different types of systemic oppression have a cumulative effect that exceeds the sum of its parts such that, for example, a black woman finds her experience adequately represented in neither feminism nor the Civil Rights movement. In the 1989 essay where she coined the term, Kimberlé Crenshaw wrote that “because the intersectional experience is greater than the sum of racism and sexism, any analysis that does not take intersectionality into account cannot sufficiently address the particular manner in which Black women are subordinated.” The burgeoning interest in intersectionality since Crenshaw introduced the term reflects the unfortunate fact that identity-focused social-justice movements can suffer from blind spots and exclusions.
The HVN charter is primarily a guide for conducting meetings, and so it appropriately, optimistically shifts the focus from intersecting systems of oppression to intersecting liberation movements. Without ignoring the gaps and tensions among various social-justice movements, we can find strong historical and theoretical precedents for the deep inclusiveness of such movements. They have a magical way of benefitting not just a single demographic, but the entire body politic. The various branches and waves of feminism and queer pride and disability studies have helped everyone by loosening the constraints, for example, of gender roles, normative desire, and ableism. For those who prefer more concrete examples: family medical leave, gender-neutral bathrooms, and curb cuts have benefitted far more people than the “special interest” groups who first advocated for them.
The Hearing Voices movement, too, has the potential to benefit many who have never heard of it and many who have never heard voices. This is because the “psychiatric oppression” referred to in the charter extends far beyond the profession of psychiatry. When HVN participants distance themselves from the medical model, this is a shorthand recognition of what some sociologists call the “social construction of reality.” The contemporary Western medical construction of mental illness, replete with diagnoses lacking biomarkers, consists of makeshift narratives built around our persistent ignorance about the human mind. Many users of psychiatric services know from experience what the academic field of medical humanities helps highlight: the fact that the meaning of “illness”—and thus “madness”—is culture-specific and evolves through history. In short, madness is an attribute of the culture, not the individual.
This shift of focus can be remarkably empowering, and it explains the force behind the HVN charter’s insistence that “people’s experiences with systemic oppression are accepted as real.” (In other words: Stop gaslighting me, telling me a product of our culture is merely a problem with my brain!) In the HVN, this shift of focus is accomplished less through academic analysis than through its groups’ simple but radical core practice: the nonjudgmental acceptance of people’s own understanding of their experiences—in this case, the meaning of voices not heard by others. This encourages suspicion of psychiatric labels with their stigma-inducing, socially constructed boundary between “normal” and “pathological.” In this regard, mad pride and queer pride have a deep affinity, undermining the tyranny of the normal and weakening the pressure to conform. Indeed, this sort of liberation can benefit everyone.
A Nick Lowe/Elvis Costello song about walking through the darkness of this world asks, “So where are the strong / And who are the trusted?” Participants in the Hearing Voices Network are, in my experience, such survivors without guile. They know “pain and hatred and misery” all too well; nevertheless, they persist. The HVN often appears to be the ignored, irrepressible younger kid among social-justice movements, willing to be a friend to anyone in need even if the favor is often not returned. But one would be foolish to mistake this generosity for weakness; it can come out of a prophetic relationship to our communal life.
Hearing Voices groups can offer a momentary glimpse, even experience, of utopia: a world with a blurry border between the normal and the pathological, a world where idiosyncrasies and eccentricities enjoy full play, a world so radically nonjudgmental that it opens a social space for a richer range of mental, spiritual, and emotional phenomena. Take it or leave it—but leave it at the price of your own diminishment. Those who hear voices and see visions may be the ones who created HVN groups, but everyone can seek the courage to imitate such nonjudgmental acceptance of others. What’s so funny about peace, love, and understanding?
The HVN Family Group (friends, lovers, and caretakers are welcome too) meets online for 90 minutes every Monday at 8:00 PM Eastern / 7 PM Central / 6 PM Mountain / 5 PM Pacific. Facilitators are myself (David Adams) and Cindy Marty Hadge. Our meetings are non-clinical social groups where we can share our experiences confidentially and without judgment. We are free in particular to talk about our efforts to be present for and sustain supportive relationships with family members and loved ones who may hear voices, see visions, or have other non-consensus experiences and beliefs. The group is still very new, and we are figuring things out as we go. As such, we are open to adding more groups as the need warrants.
To be added to the group email list and receive a link for joining the meetings, send a message to [email protected] indicating your name and your relationship to a voice hearer or vision seer (one sentence is adequate). We use the Zoom platform (accessible by computer or phone, no account or download required).
Well, hello David,
apparently we are fellow Buckeyes. I will definitely contact the email you gave, though at this point, I’m hoping my wife and I are on the far end our healing journey, though that could be wishful thinking, lol, as the last girl to join our family has taken longer to get connected to the others than all the rest combined, sigh.
I have walked with my wife thru her d.i.d. for the last 11 years, without the use of medications and outside the mental health industry. I accepted where she was and then we walked together from there to create our own reality as we both have healed and changed and grown. I never treated her as if she was crazy, but validated all the experiences that come along with extreme dissociation, such as voice hearing and a host more.
Thank you for your comment, Sam. I have added you to the online family group. If your wife wishes to connect with the HVN group in central Ohio, she can email us at [email protected].
Thanks so much, David, for writing this important article of invitation.
Zoom requires a download if using a mobile phone, not for a computer, as far as I know from them.
Some points I would have liked you to include–more of an emphasis on non-family loved ones who care about voice hearers–friends, other relatives not immediate family, lovers, fellow students and co-workers, etc.
And it might be nice to add some specific and graphic family interactions. Otherwise what you have described is a bit academic and disconnected to me. But that’s another story, I guess.
Thanks so much for your work! There is a significant lack of anything for family seeking HVN support, and I think this incorporation is an outstanding move to maximise visibility, access, and contribution to the HVN movement! The greater the movement, the faster we show how HVN is working for people! It is truly a labor of love to put something like this together, and to facilitate it too! With heart felt thanks for all you do to promote HVN… I look forward to when our paths cross in this group!