A New Group for People Who Hear Voices Celebrates Mental Illness Diversity
Source: Portland Mercury - Portland, Oregon, USA
original article in Portland Mercury: http://tinyurl.com/mad-mercury
AN AVERAGE-LOOKING, middle-aged man stood in the public meeting room of the downtown Multnomah County Library, asking a question. He was having trouble distinguishing "dream from reality," and he wondered why he should bother to do so when the information he is given turns out to be verifiable and useful. (Once, he was instructed to overturn an empty cup left in a phone booth—and when he did, he happily discovered someone else's forgotten pocket money left underneath.) A woman then stood and spoke of the series of spiritual transformations she has gone through, mentioning that her Catholic phase was initiated by a vision she had of the Virgin Mary. ("Why else would you become a Catholic?" she cracked.) Another younger man admitted that he has embraced the "spirituality of nothingness" after finding that meditation only exacerbated the noisy mind from which he hoped to find relief.
They were all attendees of the first-ever gathering held by Portland Hearing Voices, a new group that has formed to address the spectrum of circumstances surrounding the experience of hearing voices, seeing visions, and holding extraordinary beliefs. If the language sounds deliberate, consider that commonly accepted words like "crazy" and "deluded" are steadily developing the dark shroud of epithet among those who are beginning to recognize that our society's understanding of mental diversity is, at the very least, oversimplified.
Most people, even many of those working within the mental health system, are only dimly aware of the issues being raised by groups like Portland Hearing Voices (PHV). Nonetheless, the questioning of traditional approaches to experiences that are usually associated with schizophrenia has become quite common, particularly in the UK. (PHV's kickoff event featured a screening of the hour-long BBC documentary Hearing Voices, produced as early as 1995.) While the Portland group is among the first of its kind in the United States, intervoiceonline.org, an international network and online community for voice hearers, estimates that there are over 170 Hearing Voices groups in England alone.
The New York-based Icarus Project is an example of the growing "Mad Pride" movement, which, according to its mission statement, "envisions a new culture and language that resonates with our actual experiences of 'mental illness' rather than trying to fit our lives into a conventional framework." Through online forums, a database of resources, the co-sponsorship of a weekly radio program (Madness Radio, madnessradio.net), and publications such as the Harm Reduction Guide to Coming off Psychiatric Drugs, the international network's bustling activities indicate growing interest in the cause.
The Portland group's initial goals are simple: to provide a safe, comfortable place for people to talk about their experiences, be they negative or positive, diagnosis identified or not, or medicated or not. It also seeks to re-educate a public that not only tends to associate voice hearers with a higher potential for violence, but also habitually treats these people by snuffing their irregularities into silence with potent medication.
The New School
Nutritional analysis, detoxification, and stress and lifestyle management are just some of the alternatives and supplements to pharmaceuticals that have successfully provided relief. PHV hopes to connect practitioners in these fields with potential clients who might be anxious to seek them. It's important to note, however, that Hearing Voices groups, the Icarus Project, the Mad Pride movement in general are not focused on pushing people to reject medication—the aim is to illuminate the existence of alternate means of coping and provide honest information on all available resources.
Dr. Krista Tricarico, of Portland's Open Mind Medicine, is one such resource. A naturopathic physician who specializes in mental health and has experience with clients who hear voices or otherwise go through non-ordinary states of consciousness, she explains, "In conventional psychiatry, someone who hears voices would likely be diagnosed with schizophrenia. Based on this diagnosis, an individual will be prescribed a medication or a variety of medications in hopes of suppressing the voices. These drugs have difficult side effects, many requiring additional drugs to manage, and often disrupt a person's sense of self. Hearing voices may be a sign of an imbalance in the brain, but simply suppressing the voices does not necessarily improve the health of the individual."
Anusuya StarBear (who changed her surname at the behest of the voice she hears) says she first remembers hearing the voice of what she believes to be her great grandmother—a Cherokee woman she never knew—when she was less than a year old. Lying in her crib, lit by the moon, the voice told her, "You are the light," after which she had an out-of-body experience. The episode began recurring.
A therapist herself, with a unique blend of training that incorporates Native American practices and artwork therapy, StarBear has been visited periodically by the same voice throughout her life. At around four years of age, as she passed an optometrist's office on the street, the voice matter-of-factly informed her that she would need glasses in a few years. When she walked into a lecture hall and first glanced the back of the head of the man who she would later marry and have kids with, the voice chimed in, "That is the father of your children."
StarBear has trusted her voice to the extent of changing her name despite reservations over what people would think, including a fear that it might cost her clients (it did not). Even more profound was when she battled cancer and trusted her voice's insistence that she refuse an operation, against her doctors' strident recommendation—and the cancer went away, without the procedure.
"I never thought for a moment that I was mentally ill, or that it was a bad or a dangerous thing," says StarBear of the voice, which she always consults before making important decisions. "Always that [the voice] was a spiritual teacher. When I hear it I don't always like what it says, but always feel the truth of it."
While the idea of a wise, insightful voice or altered state of consciousness can sometimes seem appealing (ever experiment with psychedelics?), it's important to realize that for many people, it is a source of grave torment. It's also not the purpose of PHV to recast negative experiences in such a way as to assume that everyone would be just fine with their voices if they simply weaned themselves off medication and took up herbal tinctures and yoga instead.
Many people's stories are as nightmarish as they are bizarre. The following are excerpts of stories shared by PHV attendees who wished to remain anonymous:
I was lying off the edge of my bed, and looking to the window. For hours I stared in a trance as the trees gently moved from the wind. I felt as if my tongue was as thick as a strand of my hair, and vice versa. I can't fully describe how frightening and horrible of a feeling that was, but it would occur from time to time when everything around me would be silent.
I started hearing voices—a new symptom for me. They were God and Jesus' voices, tormenting me. They informed me that I had crossed a barrier that should have been impossible to cross, and therefore had corrupted the perfection and order of the universe. Also, God told me that I brought venereal disease into heaven, and that it was spreading.... There was a great deal of blasphemous content in my thoughts, which made me very fearful and paranoid. The voices finally drove me to two more suicide attempts, stating that this was how I could correct the harm I had done.
It's essential to PHV's purpose to include and recognize the legitimacy of the full spectrum of voice hearing, with respect for the individual choices made to address it. PHV's founder, Will Hall, has undergone a personal journey marked by horrific events of his own, beginning with voices and fearful out-of-body experiences since childhood.
Over the course of his life, Hall has been subjected to destructive side effects caused by prescribed medication (from mania to weight gain to the aggravation of his suicidal urges), isolated and confined against his wishes in public psychiatric wards, and shuttled through a system that treated him as a problem that needed to be controlled rather than a person in need of help. For a time during the mid-'90s, he was homeless, living in a tent in Forest Park after being kicked out of the then-sketchy Ben Stark Hotel (now the Ace Hotel) when he ran out of money. "I once got into trouble with the manager there because I was crying so loud in my room nonstop it was disturbing the tenants," he remembers. "Those were scary days."
The Will Hall of recent years has become something of a celebrity in Mad Pride circles. He was recently profiled in a Newsweek article about the Icarus Project, with which he has been involved in various capacities, including as a frequent interviewer on Madness Radio, and as the author of the Harm Reduction Guide to Coming off Psychiatric Drugs—both projects are collaborations between Icarus and the Freedom Center, another support group in Massachusetts co-founded by Hall.
In addition to his activism, Hall is now an avid practitioner of meditation and yoga (he started yoga after one of his voices, in a rare helpful moment during the bad years, told him if he didn't begin practicing yoga he was going to die). With the guidance of a herbologist, he is learning from his "very strong relationship to plants, including sage, nettle, yerba santa, and eleuthero." Along with StarBear, Hall is currently studying at the Process Work Institute in Portland, a nonprofit institute teaching process-oriented psychology. He attributes the progressiveness of this institution as the primary reason for his return to the area.
"When I was growing up, I wanted to be a magician," remembers Hall. "Then I wanted to be a biologist, then I wanted to be a psychologist, then I wanted to be a community organizer, then I wanted to be a philosopher. Now I'm sort of all of them."
Portland Hearing Voices
Portland Hearing Voices meetings are scheduled to take place several times a month at the Downtown Chapel (601 W Burnside), Monday nights from 6-7:30 pm, beginning with a Holistic Mental Health Education group on July 6. For updates and more information, including opportunities to volunteer and donate, go to http://portlandhearingvoices.net.