The Hearing Voices Network is a global affiliation of support groups where people who hear voices or see visions can find support and be believed, rather than pushed towards medication. The group was started in the ‘80s and has chapters all over the world, including the Pacific Northwest. One of their fundamental precepts is that trying to convince people that their experiences aren’t real isn’t effective. Kate Hill is the director of the Portland Hearing Voices group. Derek Pyle is a co-facilitator for Bear Creek Hearing Voices Network. They both join us to talk about their experiences.

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Note: The following transcript was created by a computer and edited by a volunteer.

Dave Miller:  Since the mid-20th century the dominant paradigm for treating people who hear or see things that other people don’t hear or see has been to give them antipsychotic drugs, in some cases against their will. But over the last four decades or so a new movement has emerged. It pushes back against this medicated approach. Hearing Voices Network provides support groups in which people who hear voices or see visions can have their experiences affirmed in a nonjudgmental setting. It was started in 1980′s and has chapters all over the world, including in the Pacific Northwest.

One of their fundamental precepts is that recognizing the validity of each person’s individual experiences can be seen as a human right.  Kate Hill is the Director of the Portland Hearing Voices group. Derek Pyle is the group facilitator for the Bear Creek Hearing Voices Group, which is based in Medford. They both join us to talk about their experiences. Kate Hill first, I gave my layman’s version of what the Hearing Voices Network is and the broader philosophy. But I’d much rather hear yours. Can you describe the ideas behind the Hearing Voices Network?

Kate Hill:  The ideas behind the Hearing Voices Network is to provide support and education for people who experience hearing voices, seeing visions, experience sort of alternative realities, spiritual experiences. Hearing voices is a bit of an umbrella term for sensory oriented experiences that are generally considered anomalous. One of the main principles behind the Hearing Voices Network is that our experiences are real, that they make sense within the context of our lives and that they are ours to make or find meaning out of. It’s definitely a social justice or human rights approach or movement. And it’s also been described as an emancipatory approach by one of the founders.

Miller: Emancipatory from what?

Hill:  Probably from traditional clinical mental health. That’s sort of where it came from, It came from a clinical environment. Marius Rome, who worked with a patient, they were able to come up with the idea that it is possible that our experiences are absolutely real. And if we start from that perspective, maybe we can actually make a little bit of progress in the direction that is beneficial to the voice hearer.

Miller:  Derek Pyle, if we’re talking about emancipation from the kind of the medicalized world maybe this question needn’t even be asked. But I want to ask it anyway, because I’m curious about your preferred language and the preferred language of this movement. Some of the phrases I’ve heard a lot over the years for talking about what we’re talking about here would be hallucinations or delusions. Or that people who suffer from these or have these experiences could be dealing with a psychotic break? How do you feel about all of those bits of language?

Derek Pyle:  That’s a great question. One of the fundamental tenets of the Hearing Voices Network is that we ask each other. So it’s a peer support. Our groups are peer support based. We do sometimes have allies that will help - people who don’t hear voices or visions that sometimes help start a group or may even help facilitate. But generally we’re led by people who, like myself, who have had these experiences ourselves. So I think one of the questions we ask each other is, ‘what does your experience mean to you?’ And I think part of this emancipatory thing is that so many of us have been forced into so many systems. [We] have been forced into medication and have had violence forced upon us just for hearing a voice. You know sometimes it’s really as simple as that. It’s [as though] I heard something and people just freak out, you know? And so I think that the question that we ask each other in the groups I’m part of and in our community is ‘but what does your experience mean to you?’

And if someone comes in and says, ‘I believe I have an illness and I’m psychotic’. [Our reply is] ‘Well, that’s a big word. What does that mean? You know, how does that actually show up for you?’ And likewise, if someone comes in and says, ‘I have aliens that are communicating with me’. [Our reply is] ‘well, that is stressful. Are they helping you? How are you navigating that experience?’ And I think Kate mentioned Marius Romme and Patsy Hage was his voice here, that they were working together and part of their relationship.  One of the stories [was that] they were trying to get rid of her voices. And she came in one day and I think he had a cross in his office maybe, and maybe Jesus. And she said, ‘how do you know that that guy is real but my voices aren’t?’  Why do we assume that some people’s experiences are real and others aren’t?

And I think in the Hearing Voices Network we’re just willing to say this human experience is quite mysterious and it’s important that we’re together and that we have community and that we’re able to explore our experiences. That’s really important, but also what does it mean to [them]? How are [they] creating that meaning? How are [they] navigating the distress? And oftentimes people are like, ‘I need to sleep’. They’re not [saying that they need] voices to go away. They need sleep right now, or need a job, or ‘I need someone to talk to so I don’t feel so lonely.’ Then if that’s what someone is asking for, support around the voices may or may not be a problem. They can be distressing, but it’s really [about] following each other’s lead and trying to get some sense of our own dignity that, as Kate was saying, our experiences are valid and have meaning and we can create that together as well.

Miller:  We’re talking so much about personal experiences here and how that is the key to respecting people’s individual experiences of their lives, of their brains and minds. Is that the key part here? So if you don’t mind, I’d like to ask both of you a little bit about your own experiences. Derek, was there a first time that still stands out when you heard a voice?

Pyle:  Sure, yeah. There are some folks who hear voices every day all day and my experiences tend to come and go in phases. I had a lot of experiences that, in retrospect, [would] kind of fit into this voice, hearing visions. But I just thought the human experience is quite broad and wide and there’s all kinds of things going on. And, so I actually was in residential treatment programs as a teenager. I spent about a year and a half in residential programs. And, at the time I didn’t identify as a voice here and I’m really grateful that I didn’t share my experiences with the people in the system in any real detail because I would have ended up in very different, much harsher restrictions. It wasn’t until my,

Miller:  But if I can interrupt, it wasn’t because of self preservation [that] you didn’t share, when you were already in treatment, I guess for something else. It was you didn’t not share that you were hearing voices because you didn’t want to say, be given bigger drugs or more intense drugs? But you didn’t think it was anything unusual?

Pyle:  It was both, yeah. I think I didn’t think it was anything unusual. I thought it was deeply personal and deeply intimate to me. And so I think, in that regard, I sort of would gauge if this someone, you know, I should trust with my really deep intimate life experiences. And in 99% of the adults and other people I knew around me, the answer was no. And it was really clearly no. And I think looking back, that was really important self preservation. But it was more about my own kind of experiences just being so intimate. And it wasn’t until my twenties where I started having experiences that were more clearly really distressing, this feeling of really kind of out of control. ‘Oh I’m really hearing voices right now and not sure what’s going on here’. That came much later in life.

Miller:  Not sure what’s going on? Could you describe what that felt like when it felt more problematic for you?

Pyle:  Sure. I’ve had experiences of being really quite sure that there’s a CIA plot that I am being targeted in. [In it I am] trying to figure out, driving down the road, which construction workers are part of this sort of CIA plot and who’s out to get me and what do I do about it? You know, what do you do when the CIA is out to get you? (Pyle laughs) It’s really quite hard to figure out where to go and where it’s safe.

Miller:  It’s a terrifying, and I think, maybe helpful example [in] understand[ing] how the precepts work. Because as you and Kate said, the central one here is that you take people’s experiences seriously and you ask what they mean to them. It also sounds like a really scary time to be given messages that could endanger yourself or others as you’re driving around. Now, if somebody came to you saying ‘this is what I’m dealing with’, how would you approach that?

Pyle:  I think I would start by listening. I would start by really listening and just trying to understand what’s going on. Folks in the Wildflower Alliance, an organization in Western Massachusetts, talk about VCVC.  It stands for Validation-Curiosity-Vulnerability and Community. It is sort of like this sounds really real, right? And sharing a bit of my own experience if and when it’s relevant. And then I think it’s just letting people be themselves. If I start struggling against someone’s reality, then we’ve entered into a power struggle rather than ‘that sounds really scary to be chased around by the CIA because that’s that’s a really scary place to be in. How are you dealing with that? What do you need?’ And I think saying, ‘what do you need right now’ is very powerful. But it often stops people in their tracks. If you ask someone that you have to mean it. You know it’s sort of like ‘and I don’t know if I can do it but what do you need? What would actually help you right now?’

Miller:  Is it hard for you to always mean it? Even to say that sounds really hard. I mean it does sound hard to feel like you’re being chased by the CIA. And even if you acknowledge the reality for the person you’re talking to of what they’re experiencing, if as you’re talking to them you don’t share that in any way and you’re pretty sure that that’s not the way the outside world is (at that moment the CIA is not chasing that person), then how can you fully be there for that person if you don’t share their experience?

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Hill:  Well it’s actually very important that you don’t have to share somebody’s experience so that you can be there for them. I think sometimes we may have a tendency to take our own belief systems a little too seriously. And that doesn’t mean that they’re not important. But they are not related to what this person is experiencing. So I think part of being in the Hearing Voices Network and particularly facilitating groups is to allow yourself to have that peaceful distance between yourself and your beliefs, enough to support somebody else in their beliefs. And if you’re really struggling that much then just take a break. It’s a community movement. We’re all in this together and there’s one on one support and whatnot. But there’s a very good reason that we meet in groups. It’s because we’re a community.

Miller:  We’re talking right now about the Hearing Voices Network. It’s a global affiliation of support groups for hearing voices or seeing visions that other people do not hear or do not see. Kate Hill is the director of the Portland Hearing Voices group and Derek Pyle is a facilitator for the Medford based Bear Creek Hearing Voices Network. Kate, do you mind sharing with us when the circumstances were around when you first started hearing a voice?

Hill:  Yeah, sure. I was 17 years old and I use the term hearing voices or hearing a voice because I feel like it most accurately described my experience. But it was actually more of a body experience. It was sort of a somatic voice or even like a possession. It felt sort of like I was being possessed by another entity - specifically by God. And it was intense enough that I felt like I might die from it and so I spent quite a bit of time trying to regulate my breath and stay calm and hoped that I wouldn’t die from it. And then it was after some hours or a day, I came to the realization that I wasn’t going to die from it.

I started to acclimate to the experience and it became a positive experience for me.I talked to my voice and my voice talked back to me. My voice talked to me about the nature of truth, love, suffering, life, things like that. And I became very attached to my voice. And I was in this dynamic relationship with this experience, with this consciousness, for about four years. And then he left and that was the end of it.

Miller:  Throughout those four years, how much did the people around you know about what you were experiencing?

Hill:  I really don’t know. I feel like people didn’t know. It’s possible they thought I was weird but I I don’t know that anybody really realized what was going on. But to be perfectly honest with you, if they did know, I’m not sure that they would have said anything, you know.  I was working and going to school and had my social life and whatnot. So I just don’t know what people knew.

Miller:  But they certainly didn’t know that. You didn’t tell them anything about what you were experiencing?

Hill:  I told two people one time about what I was experiencing or I should say rather I started to tell them. I was involved in a church group and they talked about hearing the voice of God and they talked about prophecy and stuff like that. And the language that they used felt a lot like what I was experiencing. And just a little side note. I really relate to what Derek was saying about it being a very intimate experience. It was very very precious to me. And so to expose that to anybody feels like a risk or you know, sort of a big step. But I did. I told these couple of friends what I was experiencing very, very briefly and it was met with dead silence. And so I thought to myself, ‘okay, maybe this is not the place to talk about that’. And I never actually found a place to talk about it. It just wasn’t out there until I came across a flyer for Portland Hearing Voices that said ‘are there positive or creative sides to things like bipolar and schizophrenia? What do these experiences mean to you?’ And that seemed like, even though I never thought of what I had experienced as a symptom of an illness or whatever, it seemed like a safe and respectful and even caring place to go to share my experiences.

Miller:  So years later you found a venue to talk about it and to help other people who were currently hearing voices or seeing visions?

Hill:  Yeah, it was like 10 years later.

Miller:  What was it like for you the first time you could actually be in a room with people who weren’t pushing meds on you or trying to convince you that what you’re experiencing was not actually based in reality? When you experienced the kind of openness that you’re trying to engender in these community groups, I’m curious, but when you experienced that yourself as a participant, what was that like?

Pyle:  Yeah, I remember this isn’t the first time, but  one thing that comes to mind was a number of years ago. I was in western Massachusetts at the time and I was really, really terrified that the CIA was out to get me, you know? And I thought that anywhere I went they were gonna just come and kill everyone there. So it was really terrifying to think if I seek any kind of support for this, I will be dragging other people into it. And so I went to the hospital. I didn’t really know what else to do. And I walked into the hospital and my experience in the hospital was incredibly violent and dehumanizing. I was immediately treated as if I was guilty of something horrific. And they were trying to figure out what it was. They kept taking me into different rooms. Different people kept asking me similar questions but with slight variations. It was as if I was being interrogated over the course of multiple hours. And to me, it confirmed that I was in a CIA experiment.  It was very bizarre.

And after six hours I’m like, can I have some food? And they’re like, well we’ll give you some food after you answer these questions.  And I’m in an experiment, you know? And I was forcibly hospitalized. I was medicated against my will. I lost consciousness for 18 hours. I came to and really felt like my life had just been shattered. And when I got out, I ended up reaching out to a peer run respite called Afyia, in Western Massachusetts. And I talked to Sarah [unintelligible] I had known. I actually worked at a few at one point prior to this. And I said, look, I really would like to stay here, but I’m really afraid that if I come people are gonna come and they’re gonna take it out on everyone in the house, And Sarah said to me, ‘I don’t know where we’d be as a community if we didn’t have each other’s backs’. And she said, ‘I’m willing to take that on, I think you should come’.

Miller:  And she didn’t say, ‘I don’t have that same worry’. She said, ‘we take care of each other’?

Pyle:  We take care of each other. Yeah And it was just like, come on in, you know, and we’ll go from there. And it just meant so much to me. And I do think, in groups, there are times, certainly there’s times I’ll say I don’t share that experience. But that sounds really hard.  I think there are times where it’s really helpful to, like Kate was saying, be like, yeah, wow, I don’t have that experience, but tell me more. What that’s like? I think it is really important in our groups that we give each other feedback and we’re willing to receive that. And I think I’ve heard so many people who say when they go to hospitals they’re beat up, they’re treated like animals there. And I think the hospital doctors [believe] this person is violent. Or they see the person, you know, the people who are like me when I’m in the hospital. I yell and scream. I kicked the doctor. And they come to a group like one of ours and [while] we sometimes have conflicts with each other. But it’s like the same person. To me it’s like the respect that we give each other all of a sudden just seems to really change the way people show up.

Miller:  We just have two minutes left. But on this note, I just have to get to this because I am curious how you handle situations where people are hearing voices that could be telling them to hurt themselves or others?

Pyle:  Yeah, I think again it’s really listening and really understanding and I think I think from peer support it’s okay to share each other’s concerns and say, ‘I’m really worried about you and I really don’t want you to die, really’. But I think when we talk about alternatives to policing, and these kinds of responses too, I think we are creating a different way that’s much more rooted in listening and respect and being honest and not power struggling and just meeting people where they’re at and going from there.

Miller:  Kate Hill, has it been 10 years at least since you heard or felt God in your body?

Hill:  Yeah, it’s been about that much time since I’ve experienced God in my body.

Miller:  After what you described as this intimate, intense, important relationship, what’s it like to not have that?

Hill:  Oh well, I would say it’s a lot like experiencing the death of a loved one. It feels like there’s a tremendous hole where something very valuable and treasured used to be. There’s a lot of grief involved and it takes time to work through and then you move on.

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