The written interview transcript is below, edited for clarity:
David Adams: It’s my pleasure, thank you, Leah, I really appreciate your interest and support. How did you first hear about the Hearing Voices Network and what is it about this approach that attracted you? That’s a good question because I think I took an unusual route into the organization. As an academic, I was looking for a conference where I could try out a paper on Michel Foucault’s “History of Madness.” He’s a French philosopher and that’s a very important work for the last half century of intellectual history and they accepted that paper.
I arrived there, I was one of the very few academics involved in the conference and the culture of that conference was unlike anything I had experienced before. I found it exhilarating to be immersed for several days in a culture with inverted values in a way that was really liberating and really refreshing and so I knew from that point forward that I wanted to learn more about the organization and get more involved with it.
DA: The Hearing Voices Network is a place where those who hear voices are recognized. Voices or having other extreme experiences is within this culture gives you special insight, gives you a special authority that that others lack and that that seems to me just the inversion or just the reverse of what we often encounter, and I think it can be really liberating both for Voice Hearers but also for people like me who don’t generally identify as Voice Hearers.
It took several years after I returned from that conference until I had the opportunity to become trained as a facilitator, we brought the trainer’s here to Ohio a couple of years ago, and at that point I helped start a local Hearing Voices Network group here in Columbus but I was still looking for other ways I could help the organization and contribute to the movement and I’d heard my friends at Western Mass Recovery Learning Community say on a number of occasions that they received a large number of inquiries from parents and families and requests for help and in many of the areas of the country they had no place to send them and so I volunteered to help start an online group for family and friends and they they jumped at that.
As I think you know, Leah, that the Western Mass RLC staff are very involved, they’re central to the Hearing Voices Network USA organization as well and do a lot of the facilitator training around the country and so I’ve been collaborating with them since last summer to get this family group started as just another way to contribute to the organization and also to make these services and the values of the organization available to a demographic that hasn’t had access to them before, namely, the families and friends, close friends of those with lived experience.
DA: I expected the biggest difference should present more of a challenge than it actually has so far in our first few months which is good. In a traditional group, voice hearers focus primarily on finding meaning in their own experiences and talk about themselves, about their lived experience, and I knew in a family group of participants would often wish to discuss the experience of a loved one, of someone else, not just themselves, and we feared that this could work against the HVN value of speaking from one’s own experience and letting others speak for themselves. However, in practice, that difference hasn’t been as striking as I expected.
The fact is, in our traditional HVN group, families are often a topic of conversation, right? Families are a big part of our lived experience. The family group, in the online group, the participants have been great about keeping the focus on their own experience and perception, even when they’re talking about the other family members at the same time and talking about what’s happening in their families, so it hasn’t been such a problem. What’s been more striking to me are not the differences between the family group and a traditional HVN group, but the similarities. They both can talk about anything they want and secondly the groups strive for social justice by resisting various, any form of oppressive language or discriminatory language. Those common denominators actually make the two groups feel quite similar to me much of the time.
DA: There are of course other organizations that provide services to families in the mental health field. I find it interesting the extent to which organizations tend to bear the marks or carry the character of their history, their origin, sometimes. There’s a difference, I’ve noticed, between groups that are organized by, founded by parents and organized by parents and run primarily by parents or family members generally, not just parents, and groups that are founded, organized, run by those with lived experience. HVN, of course, falls into the latter category.
I have been involved with both kinds of groups and it’s my experience that some of the groups run by, founded and run by families, can serve the interests of families more than the interests of those with lived experience and can often find it really easy to fall into the role of speaking for those with lived experience, speaking on behalf of those with livid experience rather than letting them speak for themselves and it took me a long time, it’s taken me several decades to sort of drift from one type of organization to another, but I find the values of the lived experience groups much more congenial than the values of some of the groups founded and operated by friends or family members of those with lived experience.
DA: Yes, I’ve been in a family for decades now, it’s getting close to half a century, in which as I like to say it, being somewhat ambiguous perhaps, it’s a family that has long disagreed about which voices matter. We don’t always hear the same voices and I have a sibling who hears a lot of voices that I don’t and other family members don’t and that some of the challenges of the family group that I anticipated that so far haven’t been such a challenge those are challenges I still struggle with in my own life, in that you know I want to talk about my own story and my own experience but I don’t want to speak on behalf of a family member and impose or project my interpretation on his experience and so I’m still, after all these years, after all these decades, trying to find that difficult balance between how I tell my story and how I make sense of my experience and my family’s experience without overstepping the boundaries of the family member’s truth and and without speaking on his behalf, so that’s uh it took me a long time to to get to that point, as I mentioned.
There is a concept called “anosognosia” which means “a lack of insight into illness” and a lot of family groups embrace this term, itself is considered a diagnosis, and I have come to see that word as profoundly, inherently problematic, because it is a way of saying to someone that “I understand you better than you understand yourself.”
It’s often used to justify forced treatment for people these days, whether medication or hospitalization, given the idea that someone suffering from a mental illness often doesn’t realize they’re suffering from that illness or doesn’t realize how severe that illness is and so that “lack of insight” or that “anosognosia” means that someone else has to make that decision for them to get treatment and I find that really deeply arrogant, that you know, we understand someone else’s experience better than they understand it themselves, and I have been in that place where I was trying to encourage a family member to use medication that he didn’t want to use and I think I was speaking and acting out of a place of fear, you know, a fear of the unknown and a fear of the strange, fear of what to me seemed bizarre or otherworldly.
I think it said more about me than it did about the situation I was facing and so, you know, that’s another measure I use now, it’s another mark of how far I’ve traveled over the course of my life. But it’s another mark I use now, there are some organizations in the mental health field that serve families that still find that a useful term and teach people what anosognosia is and there are others like Hearing Voices Network who thoroughly reject that term, precisely because it takes away an individual’s right to interpret his or her own experience.
DA: Right, right.
DA: Yes, I think the family and friends group is still emerging, is still in its adolescence and still finding its identity. We’ve only been going a few months so far. We really got going this fall and it can vary a little bit from week to week and so in anyone who joins us at this point has an opportunity to help shape the group or, you know, determine its focus from one week to the next. It’s a very low pressure group, no one is required to share anything or to participate, it’s perfectly fine to be a lurker, to log in and listen in and see what you can learn just by listening.
We do ask early on in the call, in the meeting, for everyone present to very briefly introduce themselves, just that so that those who are sharing and those who are speaking will know who’s in the audience, but other than a brief introduction, people are welcome to wait until they feel comfortable or feel the need to share about their own experience and there are some people who come only for one or two meetings, I think, often because they’re struggling with some issue and are looking for help short time and there are others who are like me who are turning into regulars and finding it a welcome support group to meet with and talk with once a week and there are some meetings that take a more sort of intellectual or cultural focus, they’re a little less personal.
We spend time talking about different books, articles, videos we’ve read and different theories, different concepts, like anosognosia perhaps, and then there are other weeks that are much more personal and where people talk about what they’ve experienced over the last week or the last month or the last few years and so it can vary quite a bit, it’s welcoming anyone who’s a family member, a loved one close friend of someone with lived experience is welcome to join us. Individuals sort of decide the terms and the extent of their own participation. You don’t have to commit to any length of time or are obligated to, there’s no homework, you’re not obligated to participate in any particular way.
DA: The best way is to get on our email list or just to reach out and contact us by email, and my co-facilitator, I should mention, is Cindy Marty Hadge, who is an amazing person full of wisdom and you can reach both of us through a shared email account we have which is families@WesternMassRLC.org.
DA: It’s my pleasure, thank you, Leah. I really appreciate your interest and support.