An episode of “Changing the Conversation” podcast
Vesper Moore and Tracy Puglisi share perspectives on surviving systems and how systems can be re-built to prioritize human connection and community with host Katie Volk. This episode is sponsored by the New England Mental Health Technology Transfer Center Network (MHTTC).
February 8, 2021
Katie Volk, Host: [00:05] Hello, and welcome to Changing the Conversation. I’m your host, Katie Volk. Today’s podcast is sponsored by the New England MHTTC. Today, we’re talking with Vesper Moore and Tracy Puglisi about what it means to be a system survivor. Vesper is a community activist. They are also the Senior Director of Organizational Equity and Young Adult Supports at the Kiva Centers. They’re joining us from Worcester, Massachusetts. Vesper, welcome.
Vesper Moore, Guest: [00:32] Thank you. Wonderful to be here.
Katie: [00:34] Tracy is joining us from Long Island, where she works at the Association for Mental Health and Wellness. Tracy, it’s good to have you here.
Tracy Puglisi, Guest: [00:41] Thank you. Happy to be here.
Katie: [00:43] You both identify yourselves as system survivors, and I want to unpack a little bit of what that really means to you. And so Vesper, I’ll turn to you first and just ask if you could explain a little bit about what it means to identify in that way.
Vesper: [01:02] Yeah, sure. I think for myself, identifying as a system survivor is really the aspect of having been oppressed or harmed in some way by a system, and being disadvantaged and disenfranchised by those systems. For me, it’s primarily the mental health system and some of my history with the mental health system. I identify as a psychiatric survivor, more specifically, a system survivor on a larger scale, and a trauma survivor. And trauma more from the perspective of an experience that happens to us, and trauma absent of the biomedical model, but just as living human experiences.
Katie: [01:50] Yeah. That makes a lot of sense. And Tracy, what do you think of when you think of system survivor?
Tracy: [02:00] I agree with Vesper. When I say system survivor, I think of some of the systems that I was in, and the things that have happened. Mostly what comes to mind is from, the most, psychiatry. I was told by the system and psychiatry that I was sick, ill, and defective. I was given messages of, I’ll never be able to work then, that I couldn’t be a mother to my children, that I couldn’t be in a relationship. We just can’t figure you out. The focus was on me being wrong and not the things and the environments that I was in having harmed me, which led me to believe I was broken. Being around folks in our community, our survivor community, helped me to realize that I’m okay, that it’s okay not to be okay. That I have been through some pretty hard things in my life, and that perhaps the very things that others are saying were wrong with me are the things that helped me survive those things.
Katie: [03:16] Thank you for, for sharing that. Vesper, I wonder if this is what you were alluding to when you talked about the human part of trauma and not the medical model part of trauma.
Vesper: [03:28] That is what I was alluding to. Really thinking about how we pathologize human experiences as a whole. Meaning, more or less, the amount of things that have been diagnoses, usually different social class groups. If you think about homosexuality as a diagnosis, being trans as a diagnosis, asexuality as a diagnosis, actually going very early on, early-DSM, pre-DSM, some of the diagnoses for Black people and people of color, the fact that Black people and Indigenous people are five times more likely to be diagnosed with schizophrenia than White people. These are all studies and things that are understood, that that exists, but yet these forms of oppression aren’t really spoken to. And largely, a lot of that impact is that we are then told that we are the individuals that need to fix it.
Vesper: [04:29] We need to take care of our issues, that there is something inherently wrong with us. And that takes the pressure off of systems to be more accessible for us. When I think about survivorship, I think about that narrative. When I think about mental health and mental illness, in quotes, as a narrative as well, of putting pressure on the individual, I also think about, again, that accessibility circumstance and actually that the notion of mental illness is inherently ableist.
Katie: [05:05] I talk a lot with people about trauma-informed and recovery-oriented services. It’s a space that I spend a lot of my time in. And one of the things we often talk about is that traditionally, our systems and services have been set up to say, you’re broken. You need protection from yourself, and we will fix you. And I think a true trauma-informed, recovery-oriented perspective turns that on its head, to say, you have strengths and challenges. We have strengths and challenges, and we’re going to figure this out together. I wonder how that kind of flipping resonates.
Vesper: [05:47] There’s a few elements there. When I hear you say trauma-informed, I think about being informed, or trying to be as informed as humanly possible to different experiences and social class impacts that people can inherently have from being alive. Different forms of, again, trauma as emotional distressing experiences that can have some type of impact in our lives. Simultaneously, when I just think about the term, trauma-informed, I think about it as the intention. That intention, again, to approach people with different social class impacts and understanding that trauma is widespread, and that it can be directly and indirectly felt. When I think about recovery-oriented, I think about how the term recovery has been used, as I was referring to earlier, when pressure is put on the individual to, in quotes, “recover”, or that recovery is a specific journey. And I understand that there’s a lot of the idea of recovery being non-linear, that you can be on that path and experience things differently and things can impact you differently.
Vesper: [07:02] And you’re never “out of recovery,” in quotes. Before a lot of us who have these experiences, a lot of us who have experienced emotional distress in these ways, in these very human ways that are sometimes inherently tied to our personalities, aspects of who we are, or is very much separate, putting the notion of recovery on us is very negative in that lens. I think the flip is important, though. I think how we describe the flip is different. I think community healing approaches are the next step, versus trauma-informed. I think about the idea of recovery being more of a healing lens, more of a self-healing and community healing lens, and us approaching things more and more as emotional distress and trauma, rather than through a mental illness lens.
Katie: [07:57] There’s so much to unpack in what you just said. I want to give Tracy a chance to chime in here. What’s on your mind, Tracy?
Tracy: [08:05] I appreciate everything Vesper shared. I believe that we can’t talk about trauma-informed support, trauma-informed, mutual support without talking about social injustice, and acknowledging it, and sitting in the uncomfortable-ness of it. It’s not enough to say, “I’m not racist, I’m not sexist.” We have to be anti. We have to be anti-racist. We have to be anti-sexist. We have to be anti-ableist and move towards more inclusive environments of all people. I think a huge piece of that is moving away from the… I think most things I call our social construct. I’m so quick to say that, but one of the things that I really believe are part of being human and a beautiful part, is to see another human in such deep pain, and want to fix that and take that away. But that’s not what we are and what we offer.
Tracy: [09:11] I know for me, that’s been damaging, and for many others. I think the willingness to sit with one, and be, and hold space for such deep distress and despair and pain and be uncomfortable is so meaningful. I don’t know how it is in all other parts, but in, in New York we have Kendra’s Law. That is involuntary outpatient commitment, IOC, which was whitewashed as AOT, which is assisted outpatient treatment. If you look at the demographics of that, if you actually go to the New York State Office of Mental Health page and look at the demographics, you see the folks who are there, and the ones who are not. You see that it’s people of color, you see all these things.
Tracy: [10:07] It’s in the numbers. And that right there is something that we need to talk about more. As Vesper said, why is this happening? How is this still allowed to happen? I think there’s some key questions that we need to be asking. And when we’re told, oh, okay, we don’t know what to do with this, but keep saying stuff about it. Who do we go to? Who do we go to when the systems, when the government are the abusers?
Katie: [10:41] I so appreciate that perspective, and I think from where I’m sitting, listening to both of you have this conversation, we have to heal our communities in so many ways, and not just heal the individual and hold space for, Tracy, like you were talking, but really think about the systems-level healing that has to happen, and the systems-level corrections that have to happen, because so much of the history is unjust there. There’s so many -isms we could talk about, I think that feed into that, like you’ve both mentioned, and I wonder, as part of this conversation, what has helped you survive? Or where do you find the hope? Where do we turn to from here?
Vesper: [11:28] I think for myself, when I think about what’s really supported me, it’s been community efforts. I think a lot of things that are community-led…. And, I think I’ve had support from professionals who are outside of the community space, sometimes when I need consensus outside of that community. Simultaneously, I’ve found community most effective, because if you alter the culture in which people are approaching things, the impact and the nature of the impact is going to be different. What I mean by that is, is that if you have a culture that’s primarily not telling someone that there is something inherently wrong with them, that it is very likely they’re going to be able to move forward and continue to have those supports.
Vesper: [12:25] What I mean by that is, as you know, there’s people in community spaces who are asking the questions of, hey, I understand that this happened to you recently, instead of being like, oh, do you think that that’s because you’re a schizophrenic? Or, do you think that that’s because you are bipolar, or do you think that that’s because of this? People are just genuinely asking, oh, what type of systemic circumstances have occurred that have brought you to this place?
Vesper: [13:01] I do want to emphasize that that doesn’t mean that systems are inherently monstrous, that the people who work within them are inherently monstrous. I think that the system is just this complicated amalgamation of, first of all, intergenerations of individuals, different policies and practices over time that are constantly trying to be up-to-date, different processes that have separated human connection several degrees, many, many, many, many degrees. Just like capitalism isn’t inherently monstrous, capitalism originally being to the benefit of people to be compensated for their time, for the amount of effort that they put in. And instead that system becomes corrupt and inequitable.
Vesper: [13:49] Now, you see people who have the anti approach. The anti approach is necessary right now in a lot of ways. I think right here, when we really talk about being anti or critical of specific systems or services or approaches, it’s really again, in a way of seeking to rebuild human connection. When we dismantle a system, and we try to build something more humane, we’re going to have to build a new system in its place. And that’ll inevitably become corrupt, and we’ll have to check ourselves once again. I think that there’s something to that.
Katie: [14:28] That’s the beauty and the agony of being human in so many ways. Tracy, I want to give you a chance to chime in here.
Tracy: [14:38] I really think Vesper summarized a lot of it all at once, especially with that last part. It’s been something I’ve been reflecting on, actually, a lot lately. When things stem from this money place, and the haves and have-nots, and then something else comes into power, then what happens to that? I appreciate you putting that out there and sharing. It’s been something I’ve been reflecting on. I don’t see, in my lifetime, at least, what’s currently happening being dismantled. I don’t. There’s a piece of me that wishes, yes. And then I also have a fear of what’s to come next. I think, yes, we need us to be anti and to say things as they’re being said, and to offer different perspectives on the many things that are happening, because a lot of people are hurting and unnecessarily and from evil roots.
Tracy: [15:40] And yes, community, and community of our choosing, I think, to go back to the initial ask. I think that’s so important. Community of choosing of our understanding, and where we don’t have to be afraid of speaking out that it will mean that our freedom will be taken away, which is dwindling in this time of a pandemic and has been, even more so. It’s hard enough,
Tracy: [16:12] I think, for those of us who have had trusted places, people in our lives, and have been hurt by that in some aspect. And then for us to go to a system that says, yes, please, tell us what’s going on. And then if we say something about us sharing our thoughts of the very human experience of wanting to die, chances are we will be told, oh, but not that, hold on, let me get a supervisor. Hold on, let me call the police, which can result in deaths, especially if one is a person of color, and it results in further harm. I often like to share with folks because I have to say, I’ve worked with some, as Vesper said, some wonderful people that work in a system, both as colleagues, and as folks that I’ve met through trainings and other things.
Tracy: [17:17] The system says, yes, talk with us, but it also says risk control, and the two things collide. I often ask folks to think about, hey, think of the most hard thing that has happened in the past month. Now, picture going to someone with that pain because you feel you can trust them. Because that’s what it is. If I’m willing to open up to somebody, if most people are willing to open up to somebody, that’s because we trust them. We feel okay with them to be able to share this pain that we’re feeling, this despair. And to be told, hold on, I need to go get somebody else. What does that say?
Tracy: [18:08] And then to have the police called, and if you’re lucky enough to live through it, if that doesn’t cause further distress to be then cuffed and criminalized for feeling emotional distress and pain, and then most likely put in the back of a police car and taken to a hospital where then I’m going to get stripped of all my personal belongings, all of my, anything that is part of me, put into a gown with other folks that are also experiencing distress, observed, and then finally asked a bunch of questions that are not something… That are intrusive, that not wanted to be answered. It’s not how we should treat anyone that’s experiencing any kind of pain. And I wish that would end in change.
Katie: [19:05] I think what you’re getting at is that, the whole conversation is getting at, is that it’s not connective, right? We want to be connected in those times of distress, in those times of pain, to have someone really sit with us and be able to hold that, rather than what you just described, which is really disconnection and dehumanizing rather than humanizing. And that’s, I think, something that clinicians and people in the mental health system and people at hospitals and people in law enforcement, with the best of intentions and with the best of training, walk that line all the time, that tug that you, that you described. We are coming towards the end of our conversation.
Katie: [19:52] And so I’m wondering right now, as we record this, we are still in the midst of a pandemic. We are still in the midst of a time in our country when we all need a lot of healing, and we’re all having, many of us are having distressing experiences, to say the least. And I wonder in the midst of all of that, where are you finding strength and healing? Vesper, I’ll toss it to you here first, and then Tracy, we’ll come back to you.
Vesper: [20:24] I think I find strength and healing, again, in being grounded in community, but also having time to self-reflect. I think right now is a very interesting time, a very unique time, historically. And I also think, along with that, we’re seeing a lot of efforts on the rise with disability justice, as everything has all of a sudden become accessible, when it has been accessible, and when we see the issue of access, largely, when we see that the primary populace of people who are impacted are people with disabilities, largely. I get a lot of solace in myself with some of my identities, absent of a lot of these systems of oppression.
Vesper: [21:16] And I find it very connecting to have conversations with people who understand that, and who understand that my emotional distress is human. It’s okay to experience. It’s not some illness or some disease that’s inherent. Some people might want to say there’s something inherently wrong with your behavior, and it doesn’t fit into society’s mold, but if you’re willing to just have a conversation as to either why that happened or why society isn’t accessible to people, we could work, closer to collective liberation and collective sustainability.
Katie: [22:04] Thank you for that. And Tracy, how about you? Where are you finding healing and strength these days?
Tracy: [22:13] I know one of the places that I find that is in places like this, that allows spaces to have these types of conversations that are open to bring others into these types of conversations. And I appreciate that. I also find within nature, I like to be outside. I like to be in the woods. And my friends and the communities of my choosing, and also my two now adult children and our relationship.
Katie: [22:53] I want to thank you both for having the conversation, for joining us today. I really, really appreciate all of the openness and honesty you bring to this conversation. I wish you both nothing but the best.
Vesper: [23:06] Thank you for having me.
Tracy: [23:08] Thank you guys so much. That was a beautiful conversation and so needed right now. I’m just struck and moved by this conversation, and I hope that folks who listen will be as well, so thank you very much.
Katie: [23:21] And to our listeners, join us next time on Changing the Conversation.
Erika Simon, Producer: [23:27] Visit c4innovates.com and follow us on Twitter, Facebook, LinkedIn, and YouTube for more resources to grow your impact. Thank you for joining us. This episode is sponsored by New England Mental Health Technology Transfer Center, and was produced by Erika Simon and Christina Murphy. Our theme song was written and performed by Peter Hanlon. Our host for this series is Katie Volk. Join us next time on Changing the Conversation.
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