PLEASE NOTE: This is a minimally-edited transcript that originates from a program that uses AI.
Paige Miranda 0:00
Today's episode of Embodied includes numerous references to suicide and suicidal ideation. You can find this episode later at our website, embodiedwunc.org. If you or someone you know is in an emotional crisis reach out to the national suicide and crisis lifeline by dialing or texting 988.
Anita Rao 0:26
We've talked about mental health often on this show had the experience of living with symptoms of OCD, schizophrenia or bipolar disorder shapes your relationships, how getting a diagnosis can at once be a relief and a burden. How the experience of writing your mental health story can be a tool for expanding your sense of self. These are all threads We'll also explore today. But this conversation starts somewhere really specific at the doors of inpatient psychiatric hospitals.
These institutions have been around in some form since the late 1800s. And their numbers peaked in the mid 1950s. They've in the sights of lobotomy operations, forced sterilizations, and ever evolving pharmaceutical treatments. While the vast majority of these institutions have now closed their doors, 10s of 1000s of Americans each year still experience voluntary and involuntary commitment. And it's those stories that we're talking about today. This is Embodied. I'm Anita Rao.
Suzanne Scanlon - reading 1:40
I was led to an office. This was August 1992. I took off my shoe laces and handed over sharps, my eyeliner pencil sharpener, a compact mirror, a spiral notebook, I met a doctor. He may or may not have asked questions. He said it would be six months, wasn't it three? I asked. He nodded. We'll see. He said, it usually takes longer than that. I signed papers, I agreed to something. They were not forcing me to be there. Not really, though. What else would I have done? If I see now, that was the moment I should have said, No, thank you. I should have walked out. It wouldn't mean anything to the person I was then. She could not imagine leaving. She cannot imagine being anywhere else.
Anita Rao 2:43
That's writer Suzanne Scanlon reading from her memoir committed on meaning and mad women. That day she describes in 1992 was the beginning of a nearly three year long stay at an inpatient psychiatric hospital in New York City. During that time, she experienced a wide variety of treatments from anti psychotics and mood stabilizers to psychoanalysis and family therapy. Suzanne is with me now. Hey, Suzanne, welcome to Embodied.
Suzanne Scanlon 3:09
Hi, thank you.
Anita Rao 3:11
So you moved to New York City in January 1992. You were 20 years old, you were a college student transferring to Barnard. And seven months later, you began this years long stay that we just heard you talk a bit about in that excerpt. So can you tell us what happened in that seven months, timespan that led to your commitment.
Suzanne Scanlon 3:31
I moved there in January and I was already quite severely depressed, I can see now in retrospect. And I can also see that it's a very bad idea to be young and depressed and to move to New York City in January when you don't know anyone. And so I had this idea that I would kind of save myself through my intensive kind of study and work, but my depression was certainly getting worse. So I made a suicide attempt. And that led to my hospitalization, a kind of acute crisis in the short term hospital, and I was there. And I think that was by March, when that began. And it was there that I you know, I was still depressed, if not worse, after some weeks, and there was this hospital, this long term hospital that the doctors decided I would be a good candidate for. And so a doctor from that hospital came over, and it was something of a teaching hospital and research hospital, and they presented it as something that would be actually the best cure or the best treatment for me. And so I agreed to it, and it took some time for them to get a bed for me. And so it wasn't until late that summer that I was moved over there. And again, it was just a few blocks away from the short term hospital but it was a completely different way of treating patients.
Anita Rao 4:59
You meant To the research nature of the hospital that you were affiliated with. And that meant that you were exposed to this wide range of different kinds of therapeutic interventions, different kinds of medications, and you situate your story at a moment in time in which pharmaceutical drugs and psychiatry were really on the rise. So what was it like to be on the frontlines of this experimentation with medicine?
Suzanne Scanlon 5:23
It took me years in only in writing this book to kind of see exactly that specific historical moment, because I think it was presented very much as you know, therapy as an intensive place for long term therapy, and that that would be the main way to kind of heal. And yet at the same time, there was this kind of explosion of pharmaceutical treatments SSRIs, which had been around, but there were more and more and there was kind of an increase in use. So that was happening at the same time. And I was, you know, again, I was put on antipsychotic medications that I now see, were just ridiculous. Because they, they were muting my experience, I wasn't, I definitely wasn't getting better, I was becoming kind of numb to these and I was sick in a new way. It was like, let's try this one. And this one, nothing was stable for a long time, if ever,
Anita Rao 6:17
You write in the book that they needed me to get better, and instead, I got better at being sick, I got better at being a mental patient, I got better at planning my death and better at speaking to psychiatrists, can you talk about this relationship with the institution and how that evolved over this first six months to a year that you were there? Yes.
Suzanne Scanlon 6:38
I think that being a young person, and being in a hospital with other young people like me, it's inevitable that I, you know, became influenced by these other people that I became part of this community of young women, mostly mental patients. And so I think that is how I what I mean, when I say that I learned how to be patient there. And because there was no plan for me to leave anytime soon, I could sort of indulge or spend a lot of time in my depression in my sense of hopelessness in my thoughts of being suicidal. And I think there's this unconscious thing that happens, that I wanted to be sick because I wanted the doctor's care. And I'm not saying that as if I had a choice, I don't think it was quite conscious, but I wanted the care that I was able to get there. And the attention I was able to get and, you know, at the same time, we were told it was a problem that we wanted attention. And yet everything about being there was almost like fulfilling that desire for attention. So in many ways, it was offering me something that I, I really needed. At that time in my life.
Anita Rao 7:53
You really beautifully in the book, explore this long term depression, as well as the experience of grieving your mom, your mom died when you were nine years old, from breast cancer. And you spent a lot of time in the hospital thinking about that period of life and how your need for maternal care and comfort was not met for so long. And how that was showing up in your experience as an adult. Can you tell me more about that yearning in that time that you were living in the hospital?
Suzanne Scanlon 8:22
Well, I think that I had decided, again, as a child does, which isn't conscious or deliberate. But I had decided, as she left me that I would become defended against feeling against being vulnerable. You know, that was how I my personality formed with this idea that I could, you know, save myself that I could be so strong and powerful that I wouldn't be vulnerable anymore to that kind of completely devastating loss. But I also don't think at that age, or as a young girl, it was possible to feel it. And so when I left and went to college for the first time and went to move to New York, I think that that was when I felt it in a new way I understood what I lost in a new way by not having a mother because I had never felt so completely on my own. And so being in that hospital, had me feeling that, you know, none of my attempts or strategies to move beyond that had worked at all, and here I was, I've completely fallen apart. And I thought a lot about my mom in the hospital too, because she was sick. And my last memories of her were in the hospital and that was when I saw her. You know, as a young girl, I saw her falling apart and kind of her pain sort of making her vulnerable and losing the kind of the personality I needed as, as a mother I needed her to be and so in some ways again, I think I was returning to her without intending to, to that son of needing help of needing to be cared for.
Anita Rao 10:03
You had the experience 20 years after leaving the institution where you got access to your medical records, and you reflect in the memoir about how the process of reviewing those records showed you in some ways, how the way that you told your story about your mental health was evolving over the course of your time living in the institution. What was it like to read about your younger self through the eyes of the doctors that you had been seeing?
Suzanne Scanlon 10:31
Well, it's bizarre, because I can't in general recognize the person they're writing about when I asked for the records, I really hoped that there would be kind of day to day details. And those weren't there. It was a shorter stack of summary. And there was a very clear narrative written to present the beginning, middle and end of my stay and my treatment there. And that was really so strange to me, because it never felt like that for me. And I've never looked at the experience that way. I've never seen it as Oh, I went in, and I was healed, and I came out better. And yet that was the story in these notes that was told so that it just became interesting to me as something given that I had been writing about it and I'm a writer, and that this narrative they had provided was so unlike my own just became interesting to me.
Anita Rao 11:29
Writing and reading are some of the primary ways Suzanne processed or hospitalization in real time. Through the words of women like Sylvia Plath, Audre Lorde and Virginia Woolf, Suzanne began to put her own experience in context. After she left the hospital in the mid 90s. Reading continued to be a tool for her healing. Coming up, we'll hear about what it was like for her to transition out of the hospital, and how literature has shaped her concept of madness. We'll be right back after the break.
This is Embodied our show about sex relationships and your health. I'm Anita Rao. Today's episode includes references to suicide and suicidal ideation. If you or someone you know is in an emotional crisis, please reach out to the national suicide and crisis lifeline by dialing or texting 988 Suzanne Scanlon spent nearly three years living in an inpatient psychiatric facility in the early 1990s. We left off hearing about her day to day life there from experimental therapies and drugs to her processing the loss of her mother. Towards the end of her state, Suzanne was permitted to leave the ward during the day to attend classes at Barnard, she was living in an intermediate space with one foot planted in the psychiatric hospital, and the other in the halls of her college. So Suzanne, take me back to this particular time in your life, what was it like to live in that transitional space between being an inpatient and being a college student?
Suzanne Scanlon 13:10
Well, it was strange on both ends, I mean, I think I was thrilled to go back to school to be in these classes to be reading in this way that felt so exciting as my education did. And yet at the same time, I felt quite separate from the students around me, I didn't know how to make connections there, I still felt very connected to my friends in the hospital to the world of the hospital, which felt like my home. And I suppose, you know, in some ways, what I brought to college, really this return was that people would be horrified if they knew, or they would certainly judge me, or they would look at me differently. I wouldn't be seen as, as just another student, if I sort of presented that. But also, you know, whether or not they would respond that way, I just didn't know how to, I didn't know how to explain it, you know, and I felt, I felt great shame around it. Around my experience, even though, you know, it was the only way I could step back in was with this sort of gradual approach. I still felt really ashamed of where I'd been how long I'd been that I was still there. Yeah.
Anita Rao 14:21
You mentioned that you formed some really deep friendships and relationships in your time living in the hospital, and you lost touch with a lot of your friends from life before, but you made friends that were living alongside you. And there's one in particular that you talk a lot about named, Hank, and I'd love to learn a little bit more about the significance of that friendship for you in those years.
Suzanne Scanlon 14:42
We just really hit it off. And I think we had a lot of shared interests and kind of writers and books and just sort of cultural interest and you know, when we were able to toward the end or afterwards we'd go to place to Gather and at the time, I was very much in the theater world and I was acting or wanting to be an actress. And he was, you know, super smart and funny. And yeah, I mean, in retrospect, he was, he was my best friend there. And I, it was very difficult to keep that friendship going after we left. And that surprised me. But it made me very sad. And it's still, I'm still sad about it, because I don't I think in other circumstances where you would, you know, in college or as a young person, you know, you make these college friends, let's say, and they lost your whole life. And we were that age. But given the, you know, the context of our, our meeting, it wasn't set up for that, that you that you have, you know, like a college reunion, or that you stay in touch with these people. In fact, a lot of the steps of getting better were to sort of move beyond the identity of being a patient. And that could mean kind of moving beyond these friendships.
Anita Rao 16:00
There was a lot of this exploration of identity that you were doing through reading, you're reading a lot of authors who had talked openly about mental health, Virginia Woolf, Sylvia Plath, you were thinking about ways that they told their story around health and illness. And it seems like these stories helped you really process your own experience. Why? Why were you drawn to these authors in particular?
Suzanne Scanlon 16:26
Well, again, they were writing about the things that people didn't like to talk about, they were writing about the states of, you know, extreme psychic difficulty that would lead somebody to want to die. And those weren't things that people talk about, there still are things that people don't like to talk about. And you can be shamed, or stigmatized, as we know for dealing with these issues. So it was thrilling to me to find these writers who were having these conversations, and it continues to be and I I think I was always getting messages that, you know, these people were romanticizing mental illness, and so on. And that that's, again, a kind of built in stigma we have and yet, it wasn't romantic to me, but it was representing something real it was representing what my life was and what clearly many people's lives have been. And so it took me years, I think, to really embrace the importance of these writers and the power of these writers, and helping me to get through and to understand it to make meaning of my own experience with mental health.
Anita Rao 17:34
We talked earlier about when you signed into the institution, you were you had to kind of say that this was happening voluntarily, and you chose to go in and as the years went on your perspective around how voluntary these terms were began to shift. Can you tell me about that, and what the process was like, of figuring out how to leave and how much agency you had in that?
Suzanne Scanlon 17:58
Well, I think I was so I was so young, and I was so depressed that I was very passive from the beginning, from the, from the moment I enter the hospital, so that the idea that I had, I was making a choice is strange to me now, because I didn't have perspective. At the time, I couldn't see ahead to the next three years, I couldn't see the consequences of this, that would last for a long time. So I went along with it. I went along with the suggestions, both in the short term hospital in the decision to move to the long term Hospital. My saying no to any of that would have been going against doctor's orders, it would have required a kind of strength that I was there because I didn't have that I I wasn't able to make any positive choice for myself. I wanted to die. I was so depressed. And so I was so desperate for help. And I was doing what I would was told would help me.
Anita Rao 19:02
You had a turning point in your hospitalization experience that you described as a decision not to consider suicide. And that felt like a big moment for you feeling that kind of active agency. How did you come to that moment?
Suzanne Scanlon 19:16
That was after I left the long term hospital and I had been trying to live on my own and it was extremely difficult after being a patient for so long, to sort of make my own life. And I had this I think what they call learned helplessness, which had been reinforced being in the hospital. So I was continually re hospitalized. And I think there was one point at which that had gone on for so long. And it was I began to see it was a dead end. I began to see this was not helping me. And maybe it was because I'd been able to be in school or was around people who were enough outside of that world of The hospital. But something clicked for me one day that this is a dead end, and you can stay, you could stay here in this dead end for the rest of your life and people do. And you know, I don't judge anyone because people need help. But I had something in me that was able to then try a different way. And I don't at all want to pretend that that was sort of an obvious or clear I didn't trust myself even to announce that that was happening. In retrospect, I can see that that's what I did. But I didn't trust it would work. And my life was not suddenly better. And it's been very difficult. And it was especially difficult for the many years after that.
Anita Rao 20:43
You had this evolution in your thinking about what it means to get better. And you really wrestled with that and your time living in the hospital, whether you have to get worse to get better, which was something that you heard a lot whether there is this binary between I'm sick, and now I'm well as your years, kind of since that time have increased? How was your perspective shifted on, on what it meant to get better?
Suzanne Scanlon 21:09
Well, I think that I, in many obvious ways I did get better. I haven't been hospitalized for one thing. But in other ways, the things that led me to the hospital are still, you know, feelings that I deal with I, you know, certainly have to work very hard to take care of myself in terms of dealing with depression and learning how to cope. I think that what changed was the focus on sort of coping skills, right, and, and emphasizing ways that we learned to live with these issues that kind of come with life come with being alive, and the intensity certainly eased up. And I built other parts of my life that were quite healing and supportive. But I also learned to kind of integrate this way of, you know, understanding my feelings as they arose and learning how to kind of deal with them. And certainly not, there was something about being young that I had the sense that I would never feel anything else, when I felt those feelings that despair. I did not believe it would change that it would ever be otherwise. And I think that with aging I have that certainly what I've learned is that nothing is nothing lasts forever.
Anita Rao 22:27
You talk about motherhood as a moment of really important shift for you. And for a number of reasons. You did have to stop taking medication you'd been taking for a long time. You tried new medication in that era, but there was also a lot about mothering that seems like kind of helped you learn how to sit with discomfort? Can you talk a little bit more about motherhood and that shift for you?
Suzanne Scanlon 22:52
Yes, well, I think, you know, it's also connected to having had very loving and supporting relationships in my life. And my husband then was, you know, quite loving and supportive. So all of that was was part of this healing, I would say, and success in other areas of my work life. But there was something about having my son that was, it was such a joy in a way that I think really connected me to my mother, again, to the kind of mother daughter, parent child relationship in a new way, being a mother was a way to return to my sense of having a mother in ways that I couldn't explain, but it was kind of that depth of feeling and love and joy. And it was so it was so totalizing at least when I was pregnant and he was baby, that i i stopped really being able to imagine these other states or other ways I had been in the world I stopped being able to even imagine being so depressed that I would want to kill myself like that became so far from my consciousness because I was just so unloved and so committed to being the best mother and I still am. And I it changes as my son has grown up. But you know, that was a huge part of my life. And my story. I think
Anita Rao 24:15
You talk a lot in your book about other narratives of illness and the ones that you looked to from the past the ones that were being published at the time when you were in the hospital Girl Interrupted, for example. And then in your years since leaving the ways that you have acquainted yourself with more diverse narratives, realizing that a lot of the people that you were surrounded by in the hospital were white, like you, what was it like to become acquainted with more diverse experiences of severe mental illness in those years after your own hospitalization?
Suzanne Scanlon 24:51
Yeah, I mean, I want to say that not everyone was white like me in the hospital. Perhaps the majority of patients were but I do think that the majority of narratives like Girl Interrupted, or the bell jar, that get presented as Mental Hospital narratives are the main ones are, of course, white women. So I certainly, you know, my reading has, I've worked to kind of understand that and see that as problematic, of course, and to read more diverse narratives and to understand sort of the way you know, racism, of course contributes to mental health or what we consider mental illness. And all of that has helped me reflect on the ways that our treatment in the hospital was considered separate from what was going on politically, or socially, or culturally in this world that we had come from, and how strange that was, when I've spent my life as a writer and educator, kind of looking at the ways social forces affect who we are and who we become and our identity and opportunities we have or don't have. It's bizarre to me to think how that was not considered or in a book like Girl Interrupted, that she doesn't do much with that, you know, presented as something neutral at the time, I'm with the bell jar. And you can see, you know, there, being white women put from privileged backgrounds is so central to both of those books, reading the bell jar, you can really see now the racism is quite overt, but she wasn't aware of that at the time. And then Susanna Kaysen just ignores it, I think she doesn't go into it. So for me that it was important to draw attention to that, and it continues to be,
Anita Rao 26:39
I want to talk about the word madness, and your choice to use that word as a way of situating your story in a larger context to kind of express your complicated feelings about specific mental health diagnoses? What does kind of sitting at this vantage point writing using the word madness do to help you understand your experience of institutionalization?
Suzanne Scanlon 27:08
Well, I have such an allergy to certain diagnostic categories as they are because I think I understand the history of what has gone on with psychiatric care what's considered, you know, best practices, I understand how variable that can be, and how how random it can be when you happen to be, you know, born and treated, whether you're considered hysteric whether you're considered a candidate for a lobotomy, and so on. So I, I feel frustrated by the limitations of a contemporary diagnosis, which, you know, some are very trendy, but madness is a it offers a lot of just larger understanding of what it is to be alive and to respond, and to deal with the sort of extreme emotional states and the way that it's connected to grief, for example. So when I'm talking about Shakespeare, and I'm thinking about Hamlet, and I'm thinking about the way, you know, Hamlet, the way Shakespeare talks about Hamlet is mad, or he's acting mad, and no one really knows the difference. And this is something that I could really identify with, because he was, you know, his father had died, and he was so angry, and his madness is this way of acting out. And I don't see that as romantic. I think people are afraid of the word madness, or they might dismiss it as romantic. And it's not, it's just that it allows for the larger conversations that you know, writers and philosophers have had, and continue to have about these experiences that are far beyond a kind of contemporary moment. And in psychiatric care. You know, the problem with contemporary psychiatric care is this desire to fit everything into a clinical lens. And we all know that doesn't work. It's not that medications or diagnoses don't help or can't help. But it's that for many of us, there's so much more to it. And it can be really offensive to be limited by this clinical category.
Anita Rao 29:06
There is so much that has shifted in how we understand and treat mental health in the course of your lifetime. You saw some of those changes in real time. As you were ending your time and hospitalization, fewer people were staying for longer periods of time, we talked about some of the medication shifts. I'm curious, what type of care you wish your younger self could have received during that period. As you look back from today's vantage point.
Suzanne Scanlon 29:36
Well, I wish there was a kind of community based care, that would have been less stigmatizing. Because I do believe what I was offered on the level of being part of a community of having these people around me people who cared about me people I could I could talk about these feelings and these experiences on that level. I think it was I was incredibly lucky. Got to have that support. But I don't, I think the problem was that it was in this setting where, you know, I had to be considered ill, and I had to be probably over medicated. So I think I try to imagine a world in which that could be provided somehow, in a more integrated into day to day life, that kind of communal living. I mean, you know, and not something that isn't necessarily religious or like a cult, right, which is where other people go, I think to sort of get that same experience that I received. What if there were another way to do that that wasn't damaging.
Anita Rao 30:39
Suzanne's experience in the New York state psychiatric institute and hospital was in the early 90s. And since then, approaches to medication diagnosis and hospitalization have really shifted. After a short break, we'll hear from a number of folks about their space and modern institutes, and we'll meet an organizer who's working to reimagine the future of care outside of hospitals. We'll be back in just a second.
This is Embodied. I'm Anita Rao and today we're talking about inpatient psychiatric care. A note that this part of the conversation references suicide. If you or someone you know is in an emotional crisis, please reach out to the national suicide and crisis lifeline by dialing or texting 988. We just heard about Suzanne scanlines experience of living for years in a mental health ward in the early 90s. And now I want to bring us forward a few decades and talk about the experience of being held in a contemporary psychiatric facility. Here's researcher Dr. Laura Lopez-Aybar, who spent a portion of her childhood, in and out of hospitals.
Dr. Laura Lopez-Aybar 31:54
I started my journey, I guess, as a psychiatric survivor, when I was about 13 years old. I was only in psychiatric hospitals as a child and as an adolescent. And it was a harrowing eye opening experience of constantly being compliant, having no privacy being being made to be stripped naked, and having your cavities checked. Then I also experience psychiatric coercion being degraded and humiliated by psychiatrists and other mental health providers. So, based on this, what I want to see in a mental health system being improved is shared power informed consent at every stage, people having choices in their treatment and what they want to do. And I want to see community engaged services where we're engaging in activism and pro social action to reduce disparities and offering other choices instead of just incarceration.
Anita Rao 33:26
We'll get into some of those alternatives to inpatient psychiatric care in a little bit. But first, one more perspective from interdisciplinary artist Chanika Svetvilas. She's experienced multiple inpatient stays in the past few years and calls her experience psychiatric incarceration.
Chanika Svetvilas 33:48
I have been traumatized by psychiatric incarceration. When I was hospitalized, there was no communication about when I would be released, or why I was there. I was course beside myself involuntarily. I experienced severe side effects from psychiatric medication that was given to me. And it made it difficult for me to walk or talk or be aware of time. The second time I was hospitalized, was for suicide attempt. And I do remember waking up strapped to the bed. I had coughed up activated charcoal from having my stomach pumped. What I remember most was being scolded for my actions. There was no compassion.
The last time I was hospitalized, I was again away from friends and family. But my parents were able to visit me and my doctor at the time that psychiatrists made no effort to speak to them which left my parents puzzled. They knew I needed something familiar. So my parents brought me Thai food. My dad pleaded with my psychiatric team to release me to their care, but he was refused. The most prominent feelings I had during my hospitalizations was fear and feeling trapped, feeling like I would never see home again.
Anita Rao 35:32
Today, many folks who've experienced involuntary institutionalization call themselves psychiatric survivors, activist Stefanie Lyn Kaufman-Mthimkulu considers himself to be in that group. They were institutionalized twice, once when they were 17. And the second time when they were in college at Brown University.
Stefanie Lyn Kaufman-Mthimkulu 35:53
I have very embodied memories of my experiences with psychiatric incarceration, especially as somebody who has survived sexual violence, I think it can't be overlooked the way that we get to the hospital and the process that that entails, which is can be very violent for people and involve a lot of aspects of your consent to being violated, you can be touched against your will, you can be restrained against your will. And that's something that can start the minute the first responders who are typically police kind of arrive at the scene, I can feel myself as we're speaking, getting warm, having memories of being injected with a sedative against my will. I was also hunger striking during my time in the hospital ward, and have just chronic memories of dehumanization, and not being able to access my support network, or information about how long I could be held or what the process was like or locating a patient representative. And I think my experience was was one that I have had to continue to heal from it was not healing for me, it became an additional trauma that I continued to heal from in my life.
Anita Rao 37:17
Stefanie is the founder and director of the grassroots group project, let's an organization that's built around peer support for mental health. But before we dig into the changes Stefanie's trying to make today, I want to zoom out a little bit and talk about how we got to this point. In the 1950s, the number of people living in public psychiatric hospitals was more than half a million. In the early 1960s, John F. Kennedy signed the Community Mental Health Act. The goal of the legislation was to shut down inpatient hospitals in favor of creating community based mental health care centers. Over the course of the next few decades, many hospitals were shut down. But very few community health centers were actually built. This movement was called de institutionalisation. Many cite de institutionalisation as the source of the mental health crisis we're faced with today. But it's a little more complicated than that. As funding for mental health declined, incarceration rates increased. Today, when someone is experiencing a mental health crisis, their first point of contact is most often law enforcement before they would move on to an institution. Here's Stefanie.
Stefanie Lyn Kaufman-Mthimkulu 38:30
There is often a narrative that when many of the state asylums were closed, that that type of you know, quote, care doesn't exist anymore. I think what's what's really happened is that the asylum has actually proliferated. So we might not actually think of something like community, forced community treatment, right, there are people who are under court orders that are being people come to their home, potentially injecting them against their will, or watching them take medications. And if they don't comply with that treatment plan, they will be taken to an institution. So for me, that is essentially the same thing as as being held in a facility, the kind of optics of it are looking different. We're also seeing people who are embedded in to different facets of the psychiatric system. So potentially, they are coming in and doing shorter stints or shorter stays, and then they're being released, and then they are being recycled into these facilities over and over and over again. So we might not count that as a longer continuous stay, but folks are experiencing that chronic nature of living inside of institutions. So I have worked with folks who stay for 72 hours for a week, 10 days for months. Some folks I worked with have stayed up to half a year longer than that. And oftentimes as well It is under the guise of threat. So folks might look like they are voluntarily signing themselves in to continue treatment. But that is being done under some kind of pressure or coercion or being told that it'll look better for you. If this is not involuntary.
Anita Rao 40:16
I want to talk about the some of the work that you were doing to create community care alternatives to inpatient psychiatric care. And I'd love for you to share some specific examples of what those alternatives can look like.
Stefanie Lyn Kaufman-Mthimkulu 40:32
Absolutely, something that's really important in the work that we do is understanding that healing is something that is self determined. And it can look like a lot of different things for a lot of different people. And that is where we start. So if we're thinking about community care, it doesn't just mean that it's happening outside of institutions, we're really thinking about what are the values that make community what it is, that is knowing people having relationships with people being able to gather as much context as we can about people's experiences, or what is moving around them what is happening in their life world, so we can understand and meet their needs a little bit better. So for some people getting care in the community might mean having people bring food to you, the for some people, it's access to money. So that's something that we do at Project, let's having mutual aid funds and stipends for people to access, whether it's medications or a safe place to stay. Sometimes someone's in crisis, and they just need to get out of their home, or the current environment that they're in and be in a different space. So how can we make that happen? For some people, it looks like ongoing peer support, where you are receiving care and engaging in mutual reciprocal relationship with other people who navigate similar aspects of your lived experience. So community care can be so many things. And the most important thing is that it's defined and determined by the people who are seeking the support.
Anita Rao 42:05
You have had moments of acute crisis and self harm since you began getting more involved in this work. And you've called on peer mental health advocates and tapped into some of the systems that you've helped create for other people. Can you talk about what this experience was like for you to get this kind of alternative model to care, unlike the models you experienced growing up?
Stefanie Lyn Kaufman-Mthimkulu 42:30
Yeah, I think for me, I was not able to access any kind of healing until I left the psychiatric system. And being able to access support from people who I know have a similar experience, either in an embodied way of having been a psychiatric survivor or spent time under involuntary care, there is a trust there, that we know that we can hold these dimensions of experience without fearing that somebody will call the police or that other carceral outcomes will happen in our lives. And as a mother, that has been almost another cage that has been put on me this fear of, okay, well, if I talk about my experiences to the fullest extent, or tried to seek care for suicidality, or self injury, what are people going to think about my parenting capacities? Or what kinds of surveillance might I invite into my life, and as somebody who has had experiences with paranoia that have both been rooted in a very real place and also have gotten, I'll say, loose and been part of what's drawn me into crisis, it is so important for me to know that who I share information with, it will stay there, and that we have no boundaries and a container in that relationship to be able to hold that. And that someone can tell me, Hey, this is not something that I can fully hold by myself, what can we do here? So that has been really huge for me, I will say that, even within the last few years, I had attempted suicide after I gave birth to my daughter. And I had a moment of saying, Okay, you're a mother. Now, the right thing to do is try and go back to the mental health system. And I remember calling about like, 15 different providers. Nobody had any space to see me within like weeks. And one person said that they could hold an appointment for me if I put a $250 deposit down, and maybe I'd get an appointment within a few weeks. And I remember hanging up and saying, oh my god, like so much of the reason why I'm experiencing these feelings is due to financial stress. And that is certainly not helping. And I was able to connect in those moments with peers and with non clinical healers who were more rooted in a spiritual lens and in lineage Is of ancestral healing and community based healing. And that was huge, hugely important for me as well to turn to folks who were coming at these types of crises not solely from a medicalized lens, and actually encouraging this kind of breaking open, and really leaning deeply into the experience and not just shoving it away enough so that I can continue functioning as a person or as a mother. So for me, I needed the space to fully break open. And that was something that peer support was able to hold for me, non clinical healers are able to hold in a way that I never experienced within the mental health system.
Anita Rao 45:42
Centering the needs of people who've experienced mental illness is a core part of project let's and that kind of care is something we heard about from a few other folks as well, including Chanika Svetvilas, who we introduced earlier, Chanika is actually a psychiatric survivor, clinic facilitator with project let's where she supports others who've been harmed by psychiatric hospitalization.
Chanika Svetvilas 46:07
If we're going to talk about the future of mental health care in the United States, first we have to acknowledge the societal and cultural context. And I'm not just talking about stigma, but oppressive systems like the medical industrial complex, which is dependent upon profit curing from our well being, and it usually does not incorporate alternative or non western methods of healing. We also have to acknowledge that mental health care is not going to remedy systemic racism, lack of housing or food insecurity. Mental health care is not about what you do in crisis. It's about supporting each other and recognizing our interdependence. We need each other and we cannot live in isolation. Mental health care has to be a collaborative process, which means working together as a community.
Anita Rao 47:08
Embodied is a production of North Carolina Public Radio-WUNC, a listener-supported station. If you want to lend your support to this podcast, consider a contribution at wunc.org now. Special thanks to Chanika Svetvilas and Laura Lopez-Aybar for their contributions to today's show. And to Stefanie Lyn Kaufman-Mthimkulu and Suzanne Scanlon for sharing their stories. You can find out more about both of them at our website embodiedwunc.org.
Today's episode is produced by Paige Miranda and edited by Amanda Magnus. Kaia Findlay also produces for a show Jenni Lawson is our technical director.
And before we go, I have to say a very bittersweet goodbye to Paige Miranda, who brought us this show and so many other incredible hours of radio in the past year. She may be the kindest person I've ever worked with and has such a big open heart. She brings warmth, connection and real intimacy to this work and does it with such dedication and craft. You will miss her so much. Thank You Paige, for everything.
Until next time, I'm Anita Rao, taking on the taboo with you.