History of the Mad Movement - with Vesper Moore

Episode Transcript

Keith Casebonne (00:00:00):

You're listening to You First: The Disability Rights Florida Podcast. In this episode, we talk with Vesper Moore about the history of the Mad Movement, history of psychiatry, and the future of collective care and access.

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Hey, everyone. I'm Keith.

Maddie Crowley (00:00:32):

And I'm Maddie, and we're the hosts of You First and we have a wonderful episode for you today.

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So today, we're talking with Vesper Moore. Vesper is an Indigenous activist and leader deeply involved in promoting health, mental health, and disability rights through activism, leadership, organizing, public speaking, and education. Vesper focuses on cultivating social movements and enhancing public awareness to foster lasting social change. They have actively contributed to the establishment of mental health organizations worldwide and have fought to uplift civil rights in the United States.

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Vesper has brought the perspectives of people with mental health challenges and disabilities to national and international spaces with their advocacy. Vesper works with both the US government and the United Nations in shaping strategies around trauma, intersectionality, and disability rights. They have been at the forefront of legislation reform to shift the social paradigm surrounding mental health, and I will just say, such a cool person and what a wonderful conversation. As y'all will listen, they are just so purposeful and intentional in the words they use in a way that explaining concepts that have maybe been hard to understand or hard to make the connect between just so simple and so easy and accessible to understand.

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So just truly an awesome person and an awesome conversation.

Keith Casebonne (00:02:01):

Yeah, for sure. We really had a great time talking to them. And like you said, Maddie, they really do have a great ability for relaying what can be really complicated and sensitive topics in a very clear and calm way that really gets the message across. And yeah, it's understandable, it's clear, and that's even with some intersectionality talk in there with Indigenous populations, it's some history of that, and it's just a really great conversation. I honestly can't wait for you to hear it, listener, and so we hope you enjoy.

Maddie Crowley (00:02:36):

Before we get started, we wanted to include a content warning. This conversation includes instances of ableism, sanism, racism, involuntary incarceration, and mentions of violence against black, Indigenous, and people of color, disabled people, and houseless people. Listener discretion is advised.

(00:02:57):

Hey there, it's Maddie, one of the co-hosts of You First. I am a white person with blonde and brown hair in clips with clear, white glasses sitting in a room full of plants, and I am absolutely honored and excited to introduce Vesper Moore, who is here with us as a guest for the podcast.

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So Vesper, could you tell everybody a bit about yourself, share your own visual description, and also share how you identify and relate and connect with disability?

Vesper Moore (00:03:28):

Hello, everyone. My name is Vesper Moore. I'd say I identify in a lot of ways in the disability community. I do have physical disabilities, which we were just talking about earlier, a tachycardia and just other conditions that have formed over time. But I do find that my journey with disability started with being an autistic person and being a person with a mental health condition. I often like to say, "Mad person" as a way of subverting and defying the paradigm, what we have to call mental health. So social identity is so important and an identity can be in the disability.

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A quick visual description of myself. I am a brown Indigenous person currently with wavy black hair, although I'd say my black hair is normally a little bit more curly. It's weighed down right now. I'm wearing a black, V-neck T-shirt, primarily white background with a gourd sculpture, and I'm wearing a clay pendant of an ancestor. So it's great to be here.

Keith Casebonne (00:04:30):

Well, we're thrilled to have you here, Vesper. So I'm Keith, I'm the other co-host. I am a white male wearing a black shirt with brown hair, a salt-and-pepper beard and mustache, and a beige background with a single piece of art behind me.

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So Vesper, this topic is, I think, new to our podcast in general and may also be a new topic to a lot of folks out there who are listening and may not know the term psychiatric survivor or Mad Pride and Mad Movement and things like that. So can you give us a little overview and history of that psychiatric survivor movement and also how do race and power impact this history?

Vesper Moore (00:05:09):

Oh, powerful question right out of the gate.

Keith Casebonne (00:05:13):

Boom, we like to get started.

Vesper Moore (00:05:17):

So I would say in terms of psychiatric survivor history, there's many different histories of psychiatric survivors historically. We're talking over 200 years, even further back if you wanted to go further back. And there are many different movements that have emerged along the way that have been led by survivors of the psychiatric system.

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If we go back to the early asylum reform movement in Europe, you have patients coming out of institutions such as Bethlem Asylum or Bedlam, as we often call it, and working on lunacy laws. There's a group called the Lunatic Friend Society that did a lot of that work. It was run by ex-patients of institutions. Then you have the Enlightenment era in France where psychiatrists and other professionals were like, "What if we hired former patients on as staff to see if they can support others in these spaces?" And then there was also this idea of what if a lot of the inmates were unchained and had access to light, food, and basic necessities? And I know it sounds wild for like-

Keith Casebonne (00:06:31):

Go figure, yeah.

Vesper Moore (00:06:34):

When you fast-forward, I would say like 100 and something years, you have the emergence of the mental health hygiene movement and the mental hygiene movement was this idea of keeping good mental hygiene. It was rooted in ideas of eugenics, but it was led by ex-patient advocates such as Clifford Beers, who was the founder of Mental Health America, those organizations.

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You don't truly hear about a psychiatric survivor movement in formal name probably till the 1960s and 1970s. You actually hear about a consumer survivor, ex-patient, ex-inmate movement because people identify as friendly, some people identified as survivors, some people identified as patients and inmates because everyone's experiences are different, but psychiatric survivor seems to be very much overarching when discussing.

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And I think what's some big key moments in the 1950s, like just before the rise of the psych survivor movement, there was a rebellion at Rusk State Hospital led by Black inmates during the height of segregation in the United States. Rusk State Hospital, it's still around today by the way, was a segregated institution and Black inmates had less access to food, less access to water, regular exercise, received regular beatings from staff. And eventually, this led to a rebellion led by a Black inmate named Benjamin.

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And I know that this is difficult, but I do think it's so important when we talk about this history because seeing how this history impacts Black, brown, and Indigenous people of color is so critical. If you go further back, talk about chattel slavery, enslaved people in America, you have drapetomania, this syndrome where apparently if you ran away from your enslaver, it's a condition, it was a type of mania called drapetomania. Then you have Hiawatha Asylum for Insane Indians, which incarcerated 300 Natives and labeled them horse-stealing mania.

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So as you can see, there's this common threat of mania, violence, perceived violence as it relates to race. So the psychiatric survivor movement sought to speak out against that, sought to be critical of institutions and dismantle a lot of institutions. There's always been movements towards abolition and there have been movements towards reform and there's been great work, I think, amongst both sides of that because I think to work towards a better society, you do have to figure out what institutions have oppressive roots that aren't benefiting our wider society. And you also have to think, "Oh, okay, there are also things that intended to do good that could be changed," sometimes policies, laws.

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And I think that comes with the idea of, "Nothing about us without us," right? It comes from South African disability rights movement and has spread internationally. It's really, we should be involved every step of the way.

Maddie Crowley (00:10:00):

Thank you for sharing such a condensed but yet enlightening... Not a pun on the Enlightenment thing you shared, but yeah, I think it's really important for people to know where these things came from and how some of these conditions were created with incarceration in mind. When you mentioned drapetomania, when I had learned about that a few years ago, it was like a light-bulb moment for me personally when it comes to discussions of mental illness, mental wellness, what does it mean to be well, how does power play a role in all of this? So yeah, I really appreciate that and I look forward to continuing to learn and investigate some of the other instances that you shared.

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And just as a note before the rest of the episode, everything that we talk about, we're going to do our best to link to in the show notes or throughout the transcript. So just know if there's something you're interested in that Vesper mentions, that we'll hopefully have links and resources to those things.

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So you talked a little bit about how there's different components and different facets of what is now regarded as the survivor movement. So with each individual's experience or almost like different institutions having maybe somewhat different impacts on people, but similar net impact in a way, that's all to say now that this movement has been created, what are some of the core principles and beliefs of people who are involved in the Mad Movement and how does that differ from traditional psychiatric approaches? Could you just talk a little bit about those critiques and concerns that Mad folks raise about institutionalization and traditional processes?

Vesper Moore (00:11:59):

That's a great question. I would say the Mad Movement focuses primarily on collective ways of caring and caring for each other, this idea of community care being so important and central to it. And I know that sounds like a simple thing, "Oh, community care," but you have to keep in mind that when we talk about the psychiatric system and psychiatric institutions today, there is this constant need to follow the systems that finance these institutions, and the systems that finance these institutions usually require that they bill per bed that is full in that institution, usually require an assigned diagnosis to bill for those beds, usually tracking individual progress through EHR systems, electronic health record systems, and all of these different pieces. That can be important for legal reasons, institutional reasons, all the things that we know today.

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However, what comes along with that is that you view an individual as an individual who could be billed, an individual who is liable, and they're not always perceived in their full humanity or I would argue often they end up not being perceived in their full humanity. And I think the reason for that is that we take the person out of the narrative. So for example, there have been statements, I think Ted Chabyznski would say this early on, he's a psychiatric survivor, he would say, "I'm not a case to be manned." People always think of people by caseload in the health system. They think about them as, "We have to reach this many people." What gets lost though is the person.

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So I think the psychiatric survivor movement and the movement for Mad Pride, which seeks to find pride in every state of being and to every state of mind is really seeking to recenter the narrative of we should be creating these approaches ourselves in partnership with allies, true allies, and we should be working towards a type of collective liberation for our community. And what liberation means in this context isn't just freeing people's bodies from institutions. We're often in those institutions. It's about freeing our minds of these ideas of in order to treat someone, it has to be punishment and reward-based, which is something that we see often in institutions.

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For example, someone who's in an institution for a long period of time being told that, "If you behave, you might have a shorter-term stay in this institution," these ideas of fake it till you make it till you get through, these ideas of you're working towards a certain success and a certain progress. And what often comes with that is a loss of, okay, where's the collective narrative? It puts the pressure on the individual to achieve a certain standard of what's often called recovery versus meeting me where I actually am, ensuring that the supports that I receive and that we work collaboratively together towards a better benefit for my life because it's my life. It's so important.

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So I think it's reimagining our society and I think a part of that reimagining is if we had everything we needed in our communities, like in our school systems, in our community centers, in our housing centers, in all these spaces where we were talking about mental and emotional distress and wellness and some of these concepts in our community and the way that it works well for us, we would be addressing a lot of these issues earlier on and we wouldn't see people being in a space where they struggle in engaging in the community and potentially feeling like involuntary commitment is a solution to these issues when in fact what we're doing is often disappearing people. And I think that narrative is something that we speak out a lot about because we see such a rise of involuntary commitment today and yet a robust investment in community approaches. We should really exhaust every community approach before turning to something like that.

Keith Casebonne (00:16:37):

Yeah, for sure. I really love the way you described the movement as being like community care and that collective approach to caring for each other. I think that's a really beautiful way of putting it and I haven't heard it said quite that way before. I really like that because of course we know historically, psychiatric care, I would say, has really been the opposite and is very isolating. And you mentioned of course stripping away the person aspect and it becomes more of a case, but even what's left of that person is sometimes very much isolated and feels alone. So the idea of a collective community care approach, it just sounds beautiful. It sounds wonderful compared to the alternative.

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We also have involuntary commitment here in Florida with the Baker Act, and so people get put in facilities against their will and that's what happens is they get that traditional psych care, the focus on diagnosis and meds, and then out you go, and not really any supports there in the future. You don't get that community side of it.

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Of course, that traditional approach to care often will lead to stigma about mental health, and so let's talk a little bit about that. So how has mental health stigma impacted you? What is your lived experience with these traditional psychiatric approaches and how does that inform the work you're doing right now?

Vesper Moore (00:18:08):

Yeah, I think for me in my own life, the issue in terms of the discrimination and experiences I had, I don't think always were related to my emotional distress or the trauma I experienced. I think it also had to do a lot with other social identities I hold. But I do think that when I look back at those experiences, some of the ways in which I experienced stigma, discrimination, sanism today and throughout my life has always been, I think, the way in which when we speak out for ourselves and advocate for ourselves, when we believe what might be best or when we're processing something and there's a level of truth to what we're processing, but we might not be able to fully communicate it right, when you're not in a full state of clarity, I would say a lot of the discrimination in my life has been related to that.

Keith Casebonne (00:19:08):

Interesting.

Vesper Moore (00:19:10):

One of my experiences in a mental health acute unit, I was trying to speak out about the medication I was on. I was struggling with concentration, focus. I was on Thorazine at that time, which is a really heavy psychiatric medication. And while I was speaking out, I was perceived as dangerous, as someone who needed to be contained, as someone who was non-compliant often. "Non-compliant" was being written in your notes and wondering, "Comply to what? What does that look like?"

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And sure, in that moment, yeah, I was shouting because in a mental health acute unit, when you're advocating for yourself, you can just as easily be brushed off and there's no checks and balances, I would say, that are held accountable to ensure that you are being heard. There are human rights officers in mental health acute units, there's admin staff, there's people who work in a wide variety of positions, but since it's a self-contained institution, and if it's a private institution, forget about it, but because it's a self-contained institution, they can operate often however they like.

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So for me, when I started advocating for myself and speaking out, it started calm. I was like, "Hey, can you help me? Hey, can you help me with this?" And after a while of not being heard, you start to shout, you start to be upset, and now you are non-compliant. So I think-

Keith Casebonne (00:20:46):

It's the tail wagging the dog.

Vesper Moore (00:20:48):

It's the tail wagging the dog, right. I would say in terms of mental health stigma and discrimination, I always like to think about it like when you think about ableism, you think about disposability and you think about inability, this perception of inability and disposability in our society. Now when you think about stigma, discrimination and/or sanism in the context of mental health, it's when you add the aspect of dangerous. So it's like you are not only unable and disposable, but you are also dangerous so we have a reason to dispose of you or not listen to you. And I would say that happens on a really subtle level in our day-to-day lives, more covert, and then sometimes it happens in more overt ways throughout our lives.

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And I always like to say, because I think right now, the effort around involuntary commitment is really centered around people who are houseless, who are on the streets and saying, "This is a great solution for them." You're determining that's a great solution for them and you are witnessing people who are experiencing distress when they don't have access to the resources that would actually get them out of that situation of distress, and your solution is to put them in a treatment system and bill for them. That's the aspect of disposability that relates to mental health stigma because if you look at someone in distress and you're like, "Yeah, you're a disruption. I'm going to just... Let's make a choice about your life because you are an unreasonable disruption."

Keith Casebonne (00:22:32):

And it's an interesting difference between when we talk about disability rights, and I think all too often, people think about physical disabilities, cognitive disabilities, developmental disabilities, all these disabilities, but no one thinks of any of them as potentially dangerous. But with mental health disabilities, unfortunately there's that added component and it becomes like its own category and it's a separate...

Vesper Moore (00:22:58):

When you look at the institutional history, schools that were related to incarcerating individuals with intellectual disabilities and mental health conditions or challenges, those institutions were often together. And that was a segregation of its very own, continues to be, removing people from society and putting people in these spaces on the basis of their disability. It's still very true when you think about someone who is unhoused on the streets screaming for help in some type of way. Help isn't helpful if it's not helpful. I think that's a saying from Pat Deegan, but it's this idea of you come into the space and you can't help that person or support that person.

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I think a good example is I've been seeing a lot of intentional efforts to, as a part of "the solution," in quotes, I don't think it's a solution, but to remove migrants in the United States off the streets and put them into psychiatric facilities, and a lot of folks that I've met in these psychiatric facilities just need resources. They have kids on US soil, but they didn't have that kid in a hospital, so they don't have the documents needed to really support that kid. And then all of a sudden, DCF is called, and all of a sudden they're like, "You're really struggling. Oh my goodness, you're crying about this. You seem suicidal, you should stay here." It escalates very quickly.

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In all of these circumstances, all of the people here in these scenarios are experiencing mental and emotional stress, but how many of these people may actually find these experiences truly disabling versus they are being pathologized on the basis of who they are and how they're currently navigating this?

Maddie Crowley (00:25:01):

Yeah, I think that is, first of all, I'm sitting so heavy with this and it's so important. I'm really happy we're talking about this on the podcast because I think we've talked about it in reference in other episodes, but not given a full episode to this topic. And I'm really happy we are because like you both mentioned, it's been treated like this other part of disability-related activism or it's just always been separated. And I think the way you just put it very clearly how the current way things are set up specifically in the States, but this happens internationally as well, but would people be deemed the same or viewed as the same if they just had what they needed to thrive and be well and be fed and nurtured and housed?

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And yeah, I'm happy we're talking about it and dispelling the myths because when you think about anytime in the news when something's blamed on mental illness, whether that's related to it or not, is it really mental illness or some kind of disabling experience or is it that their surrounding identities or supports aren't there that have created a situation? Anyways, you said it perfectly and now I'm going...

Vesper Moore (00:26:38):

Yeah. No, I think that's right on. That's exactly right. It's about having access to those resources. And I think in a big way, our society is also not set up in a way where we have those resources built-in.

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I think people talk about suicide prevention, for example, which is an industry that makes a lot of money, but a lot of the suicide prevention initiatives aren't truly focusing on the capacity-building in society to truly prevent instances of suicide. It's often there's a lot of investment into intervention, which there are ways of, I would say, I don't necessarily even want to say compassionately intervening, but I do want to say finding a way to work with the person in circumstances of distress to be able to work through it. But I do think the investment is really this. Often we talk about things like mental health first aid where it's, "Detect the condition, detect what's going on, find this in your community," and it's instead of focusing on what's the potential condition, what's potentially wrong with someone, it's understanding what is happening to someone, what is the context of their life, what do they have access to? And I don't think that we talk enough about that when we talk about early childhood and with children. It's like I think there's so much there.

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And I think often, when we talk about involuntary commitment and a lot of these issues too, and in the United States, I have a lot of family members who are often like, "Vesper, are you proposing my kid shouldn't get the treatment they need to get well? This is the treatment they need to get well, which is involuntary commitment." And I'm like, "No, I'm not saying that at all." I'm just saying that there should be resources in your community and our society should be set up in such a way where you wouldn't even miss involuntary commitment. You'd be happy for everything that your kid had in your community, and I just think we should invest our government dollars, private dollars into that instead.

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And then usually that conversation makes things a lot easier because it's not an us-versus-them; it's actually it's families, survivors, and individuals working together and talking to systems and being like, "This is what we need." Speaking to private behavioral health doctors, "This is what we need, and if you're not offering it, we need to build it in our community." Right?

Maddie Crowley (00:29:15):

Yeah. Thank you for elaborating on that and I really think that's going to hit home with a lot of folks that are listening, and I know everybody listening has some kind of relationship to mental health, mental illness, whether that's themselves or someone they know. So I just think this is just a really important conversation and I'm happy you're here for it.

(00:29:43):

I do, I want to pivot a little bit and talk about what are those other solutions in the community? What are other ways to think about experiencing madness or relationship with madness or mental health, however someone might describe it? So a quick segue, it makes sense with the question.

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So about a year ago, for folks who have followed the podcast or listened to some other episodes, we had Jen Deerinwater on the podcast and we were talking about the intersection between disability and indigeneity and how they hold both of those identities and navigate both communities. And one of the things that Jen talks a lot about is how disability is viewed quite differently in Native communities and how there isn't really... Disability is a colonialist concept that was put onto other people's disability, and experiencing madness or mental health-related things is not something that kind of existed within Native communities for as long as they've existed, right? So that's one part of my segue.

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And then another part is that I watched, I promise since... I promise. I watched the latest series of True Detective: Night Country with a variety of really awesome Native actors, and in the episodes, the sister experiences visions of her mother, visions of other people in her life. She thinks she sees things and the show left it up for interpretation. But I think that is a really tying those two little segues together to have you talk a little bit about how does your indigeneity and other people, other Native folks' experience with their ancestors, with their communities, and with their culture kind of frame how you think about disability and mental illness?

Vesper Moore (00:32:03):

There's so much when we talk about Native and Indigenous communities and we think about storytelling and belief system and what these things all look like. Wonderful that you had Jen on here. I have a lot of love for the Cherokee Nation and Jen's awesome.

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I think but so the link is really this: I think we talk a lot about ancestral healing in Indigenous and Native communities. We can hear voices, see visions of ancestors, messages that come to us through spiritual practice and spaces. A lot of these things a person could deem as crazy or as a deficiency or as a thing that, by most standards, would be considered abnormal and unacceptable. I think it's always that there's a line, I think, with spiritual practice and religion and often what we can experience as altered states.

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I think for myself, it's really interesting because when I look at the history of places like the Hiawatha Asylum for Insane Indians and I look at Indian boarding schools and industrial schools, those same institutions that are often called schools, but I wouldn't consider them schools, that harmed so many of us, there's an intrinsic connection between survivors of institutional settings and the disability movement and community because of these historical abuses that have occurred. We're fighting for that liberation in that regard. There's a similar connection too when we talk about the Black community and the early Civil Rights Movement during the Detroit Riots, civil rights activists being incarcerated into psychiatric institutions and then their psychiatric notes reading, they were being diagnosed with schizophrenia or something like that on the basis of their association with the Civil Rights Movement. We see this use of social control, psychiatrist's tool for social control.

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But in terms of my indigeneity, I am a Taino person. My tribes are Kiskeya and Borinquen. And the Taino people, for those who might be hearing about the Taino people might not know enough, our struggle as a first contact tribe was with paper genocide and physical genocide. We had a lot happen to our land. The Taino people, we are Indigenous actually of the southern tip of Florida and the Caribbean. There's a strong resurgence movement because the paper genocide that I'm referring to was basically we were labeled as either Spaniard or as African enslaved peoples in the Caribbean on the census, so many of us were living in the community and we were labeled in such a way. So there's this weaponization of documentation that led to our erasure.

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A lot of us took to the movement. That's how we survive. Today, 60% of Puerto Ricans and Dominicans and Cubans are Taino. And a lot of them don't find out until later. My mom would often say, "Our ancestors were Indian. You're not Indian. I'm not Indian. Those are people of the past. Now let's make pasteles together," which is a 500 to a 1,000-year-old Native American tradition, "and let's move on with our day." And it's like there's just this disconnection.

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And I've heard this with other Indigenous peoples across Turtle Island, the Anubiak tribes having facial tattoos or bringing back facial tattoo practices and their grandmothers and mothers being like, "Why are you doing that? Our ancestors did that and we don't do that anymore." And they're being like, "But why?" And then when you get to the reason why, a lot of it has to do with colonization.

(00:36:19):

When we talk about the psychiatric survivor movement, it is an arm of colonization and colonial structures. If you even look at the history I was just talking about of institutions, the asylum reform movement starts in Europe after a vast expanse of what is often referred to as empires, European empires that were expanding at that time. You have asylums as a tool of colonization, which I've named a few examples so far.

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So I believe that these movements are very much connected together. I think when you talk about the context of disability and all of this, I think there is this... I think the idea within tribes and Indigenous and Native folks across the world, there is this... I think in the public eye, it's often perceived as okay, to be disabled, there's something wrong with you. It's a deficit, like medical perception. But I think a lot of people forget about the social model of disability or they don't know about the social model of disability.

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So I think if you think about it through the lens of the social model of disability, it's actually aligned to the values of many tribes and many people because it's the question of what do my people need for it to be accessible? It's not that there's something wrong with them. They may be missing an arm, they may be going through these experiences mentally and emotionally, they may be going through a lot of these things. How can our community collectively support them and work together?

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I think one great example that I love to use often is the Dagara tribe, which is a tribe in South Africa. And that tribe has the belief that when a young adult experiences something like psychosis or what we often call psychosis, that it's actually good news from another realm and it's a potential gift. They are coming into their vision and sightseeing, divination. In many tribes, we talk about a vision quest, going on vision quests and finding these things for ourselves. In Diné or Navajo, it's often to referred to as Navajo, but the people are Diné, there is the concept of Hózhó, which is communities collectively coming together to support each other, that we only heal in community.

(00:38:54):

And I think when you look at disability justice, it's values of collective liberation and coming together and interdependence that are cornerstones of the disability community in ways. So I think it's more when we look at the medical system and those ideas that are from the medical system of disability and people who are disabled being viewed as disposable that can miss a lot, but I think if you really think about it, it's more when we actually perceive.

Keith Casebonne (00:39:48):

Yeah, that's a really interesting perspective. As you were going through your answer, I was thinking about just how there's just too many times throughout history where one culture deems another culture "mentally ill" because they're just different and they do things differently or the society wants to conquer that society. And like you mentioned, it's psychiatry as a tool for cultural control and it's been going on forever. So hearing that from the perspective of Indigenous populations and communities, I just found that fascinating, and the idea that the last thing you were saying about vision quests, one man's vision question is another man's "crazy," and that's just, yeah, it's fascinating. I don't even know how to... I don't think there is a way to rationalize that or even give it any... It's generally shortsightedness, essentially, in my opinion, of most Western cultures, I think.

(00:40:48):

Taking it back to where we were talking about the idea of community support, can you tell us a little bit about the Kiva Centers that you run and what peer support groups, peer respite, what that is just in general, and a little bit about the Kiva Center specifically, and how are these peer support centers different from more traditional psychiatric institutions?

Vesper Moore (00:41:11):

I'd love to. I do want to say just a little bit about what you were talking about earlier.

Keith Casebonne (00:41:17):

Please.

Vesper Moore (00:41:19):

Even amongst some of my wellness practices, some of those involve easy breathing techniques like deep belly breathing, which are things that we often talk about, but I think the medical system might perceive as just more like holistic care that's on the side, but not a primary form of treatment. It's something that you do. And then I also have wellness practices like praying to my ancestors and taking time to do that, and then sometimes feeling like that message is answered, and someone could easily say when that message is answered or when I'm praying to my ancestors, those are delusional things I'm [inaudible 00:41:55] to, right? When in fact, those are traditions that predate the United States, they predate the European empires, they predate a lot of these things.

(00:42:08):

It's the same thing with ideas of gender, two-spirit, third, fourth, and fifth genders, and oracles not necessarily being viewed as a deficit or a blight on society, but rather you have a lot of insights because you hold energies across this spectrum of what we often call masculine. I like to think of it as beyond that, and we can get into a whole nother conversation about that. But I do want to say Indigenous societies, when we look at them, they haven't been so dichotomous or linear in that same.

(00:42:49):

So Kiva Centers, Kiva Centers is a fascinating, awesome organization. I'm so glad to be a part of Kiva. Kiva has been a part of my journey in a lot of ways. But yeah, I'm the Chief Operating Officer at Kiva. I work with a team of people, so it's not just me running it. We have a lot of people running this, and Kiva is a term of the Hopi and Zuni people, of the Hopi and Zuni Pueblos. Kiva means to go deep within yourself and come out healing yourself.

(00:43:29):

Kivas are physical structure. If you're ever in New Mexico, go to the Bandelier National. And then when you go hiking, you'll realize in that area of the Taos and the Hopi and Zuni, you'll see these mountains with holes in the side and ladder structures coming in. When you climb up that ladder and you go into that hole, those holes are called Kivas.

Keith Casebonne (00:43:55):

Oh, sweet. Nice.

Vesper Moore (00:43:57):

Yeah, you can go inside of that. It's 113 degrees outside. You climb up this ladder, you go into this hole and it is nice and cool. So you take a moment of cool, there's an echo when you speak out so you can hear your own voice return to you. And the idea of the echo is so common amongst Indigenous and Native people because we often think of ourselves as an echo of our ancestors echoing across generations. So you might hear about peer support initiatives like ECHO or the term echo or that new Disney show called Echo. And that concept of the echo is present and there's a resonance when you speak out in a Kiva.

(00:44:40):

And folks cook in Kivas, they would store in Kivas, they'd be in Kiva's as places of rest and reflection. But Kiva is also, in a way, like a womb of the Earth. You go in and you are reborn of that Earth, which is why it's like the ladder climbing into the hole, going deep within yourself, and coming out here. So that's what Kiva means. Such a deep meaning, right?

(00:45:10):

But the Kiva centers and interesting facts, we emerged from an organization called Transformation Center, which used to be a mental patients advocacy group called Mpower and Mpower came from the Mental Patients Liberation Front in Massachusetts and the Mental Patients Liberation Front is directly from the psychiatric survivor movement. The reason why we changed into Kiva is because Indigenous leadership came to it. So we're an initiative led by Natives and working collaboratively together to show, as a society, we can return to these roots.

(00:45:52):

We train a certified peer specialists for the state of Massachusetts. We train and certify them. There are many states that have different trainings and what they look like. Our training does include a history of the psychiatric survivor movement at greater length than what I was able to discuss during this episode. And it contains a lot of great skills for folks who are working in the field. And then we have continuing education trainings that are pretty great. We do technical assistance for peer support across the country and in different parts of the world. There's an organization in the Netherlands called Nieuwe Schoenen, which is the word for new shoes.

Keith Casebonne (00:46:32):

That's interesting.

Vesper Moore (00:46:34):

Yeah. And their community is based off of one of our drop-in centers because they came to visit us a few years ago, and I did a keynote at their conference, and then they opened Nieuwe Schoenen, and they've been doing great work ever since. And then there's a lot of different initiatives in Singapore and many other countries that have been developing their peer support initiatives. So we do a lot of that work also.

(00:47:00):

And then we have our peer-run respite. So our peer-run respites are such an important initiative. They are an alternative to psychiatric institutions and psychiatric facilities. They are homes, they're like houses that are staffed by survivors, disabled folk, people with a wide variety of experiences, and they're trained as certified peer specialists, and they support their communities. They operate 24 hours a day, seven days a week.

(00:47:33):

The way it works is that someone fills out a recommendation form when they need support, we contact them within 24 to 48 hours. We see if it's a good fit. They can stay with us for five to seven days, 14 days. We've had people stay with us for a month before. The stays can vary. People request extensions, but generally, it's five to seven days.

(00:47:53):

And it's been really great. We've been able to support 800 people who would've otherwise gone inpatient, who would've otherwise had their medication adjusted or put on medication that maybe they wouldn't have wanted to prior. They would've had their work interrupted, their ability to pay rent interrupted. A lot of things could have been interrupted. So this alternative is really great in that way. But I think the most beautiful thing is someone who understands what these experiences might feel like being available to you 24 hours a day, seven days a week.

(00:48:27):

We have three of these houses, two of them are in rural spaces, and one of them is in the second-largest city in New England. The names of the peer-run respites are Karaya, which is the Taino word for moon to represent self-reflection; the other one in Bellingham, Massachusetts is referred to as Juniper, and juniper berries have healing properties and the wood is resilient and it's a Native plant; and then the other one is La Paz, which is a Spanish for the peace. We primarily support a lot of Hispanic and Latina folks in that area.

Keith Casebonne (00:49:03):

Beautiful names, all of them.

Vesper Moore (00:49:05):

It's a lot of exciting work, and I think a lot of this wouldn't have emerged if it weren't for one, the Indigenous rights movement, talking about a lot of these ideas of collective liberation; and the psychiatric survivor movement, talking about ideas of self-help and consumer-run initiatives, which became peer-run initiatives; and the disability rights movement and disability justice movement, talking about interdependence and independent living and interdependent. Those ideas are all at the center of what Kiva does.

Maddie Crowley (00:49:43):

Thank you so much for telling us about Kiva. For those who are listening, of course we're going to include links to Kiva and stuff in the show notes so you can follow and support their work or just learn more about peer support, peer respite, because that's something that exists across country. There's options in Florida, so we'll definitely flag some of those too. People don't just listen to the podcast in Florida.

(00:50:12):

But yeah, we'll definitely be sure to highlight some of those options for folks because like you said, 800 people that otherwise would've experienced an institution, that's really powerful stuff, and I really hope that this teaches more folks about that option because some people just... They don't know. You don't know what you don't know. And if you can offer a good alternative that's so supportive and community-led and having peers that have had the same experiences with you to guide you through that and support you through whatever you're going through is really powerful.

(00:50:53):

And yeah, I love the names, but I'm really happy that we're going to pivot to some of your other advocacy work. But it's wonderful, in this advocacy work, having you lead in so many different spaces because you just are a fantastic advocate and I think you're making incredible impacts on those spaces that you engage with. So can you tell us a little bit about your work, both nationally and internationally, whether that's with the Bazelon Center for Mental Health Law, you also do some stuff with the United States government, the United Nations, and anybody else that you can talk a little bit about your work with?

Vesper Moore (00:51:40):

Absolutely. I do want to say with Kiva also, some of our national work that we're focusing on a lot more is supporting tribal and Indigenous communities in developing peer-support initiatives. So if you're a tribe or an Indigenous community or person from that community listening and you'd like that support, feel free to contact us, and you'll have my information linked in some type of way.

(00:52:07):

So that national work is always exciting because we talk about different standards for peer support and peer-run respite across the country, we talk about different standards for training and a lot of those things. And some of those things do involve the United States government, like The Substance Abuse and Mental Health Services Administration, talking more and more about how peer support is implemented and what it looks like it could be. So there's a little bit of that national work.

(00:52:37):

But then I have other national work, which is a lot of the advocacy and a lot of the advocacy includes defending our civil rights. One example is there was a case called HHC v. Talevski. I don't know if you all are familiar with that. And I worked with the Bazelon Center, advocates out of Indiana, Judy Heumann and many other advocates, trying to ensure that that case didn't lead to a potential law of the lands that could have come to fruition that would've impacted the rights of disabled people, people with disabilities to be able to sue healthcare providers or private insurers who are funded by Medicaid or Medicare. And it would've impacted a other wide variety of our protections.

(00:53:30):

So a lot of that advocacy was social media awareness first and foremost, letting people know what was happening, supporting people in signing on to petitions and initiatives, discussing what the protests and demonstrations in Indiana would look like, helping organize in a lot of ways, and then writing statements to both the local government, but also the Health and Hospital Corporation out in Indiana that was really fighting this case.

(00:53:59):

Another thing was CVS v. Doe. If you're not familiar with CVS v. Doe, that was right to access our medication and be able to reach our medication, having it shipped to our homes, and the height of COVID, so much going on.

(00:54:12):

And then involuntary commitment, there's a huge expanse effort right now around involuntary commitment from the CARE Court in California, they call it CARE Court, to Mayor Eric Adams's mental health initiative. And a lot of these initiatives include targeting houseless and unhoused people and getting them into care with involuntary commitment being the entry point. And as you remember, earlier I was saying, "You should exhaust every option before you reach that." Honestly, I hope we don't reach it at all. But yeah, so a lot of it's fighting for our rights, but it's also fighting for ideas of justice and coming together.

(00:54:55):

I think one of the more noted moments in my advocacy was fighting for Ketanji Brown Jackson being appointed to the Supreme Court. I was amongst the advocates that fought for that, and she was successfully appointed after months and months of advocacy. And even though today, we still see a majority Supreme Court that is against a lot of our rights, and I want to name that.

(00:55:24):

But I think a lot of it is it's advocacy in one, reimagining who has authority over our society, and working on initiatives that can allow our society to sustain and uplift human rights as much as possible. And then the other piece of the advocacy is fighting for justice for individuals. For example, Jordan Neely, a young autistic Black man who was murdered in a subway train, I helped coordinate and participated in a lot of those demonstrations and speak out for justice across for Black and brown disabled folks. It's so critical and it's not spoken to enough.

(00:56:13):

So there's a wide variety to that advocacy work, and it looks different every day.

(00:56:18):

In terms of international, in the height of 2020, there were a few people around the world who were being mistreated in institutions, and there were a lot of moments to speak out. There was one such person in Singapore who was going to be executed, put to death for bringing in a tablespoon of hair into Singapore. They were a person with a mental health condition. They were, I believe, diagnosed with schizophrenia, and they were detained for 10 years and then we're going to be executed by the government of Singapore. There was a lot of advocacy there that I worked on. I became a part of the Convention on the Rights of Persons with Disabilities as a consultant, really looking at how the convention focuses on the rights of people in psychiatric institutions.

(00:57:24):

When we're looking at what's happening in Sudan and the amount of people being murdered in Sudan as a part of the Economic and Social Youth Forum, we called for a ceasefire in Sudan, and we see a lot of that right now when we talk about war and mass killing of people in the world. And when we talk about things like that, there's also mass disablement that comes out of that. That's important to recognize.

(00:57:52):

I think in terms of my international work, it's hard because I think international and national work, you can talk very broadly about the issues, but where the work actually happens is in the local. So for me, it's often looking at the big picture of what's going on, working with advocates who are also looking at that big picture, and then connecting with people who are doing work in that community and being like, "How can I uplift your work as much as possible? And if I can, I will go into that community with you and do some of this advocacy work alongside you."

Keith Casebonne (00:58:33):

Wow. Well, thank you so much for all the work that you do, and unfortunately, it's a rare trait to stand up for other people to the lengths that you do, and so it's amazing and really appreciated.

(00:58:48):

So all of that information is a good lead into sort of this last question. Essentially, what do you think about or how do you view this present moment in our history when it relates to mental health? And we're in a world where there's an increasing re-institutionalization in some respects, we're almost bringing back ugly laws. It's a strange time indeed. And so how do you view it? Where do you see things now and where do you hope or are working toward pushing things to go? Which direction are you leading things toward?

Vesper Moore (00:59:36):

It's interesting work. When you work with the United States government, there's a lot of... I mean, I find for myself as a Taino person, Puerto Rico is like... It's a territory of the United States government. It has been under colonial rule for a very long time. So to be transparent, it's hard. It's hard doing a lot of that work I think personally for myself. I love the work though also. It's like I hate it and I love it because if there are people who truly hold these values in these spaces regardless of how hard it's going to be, the work will continue with it. Completely. It just simply will.

(01:00:19):

So with that preface, I want to say in terms of the direction we're going, President Biden had talked about access to mental health care last year and putting in ample investments, billions of dollars into mental health care. And I knew when we talked about those billions of dollars, I knew a portion of it would go to involuntary commitment and a portion of it would go to community initiatives. So we're going to see a rise in both, and we have been seeing a rise in both because we've seen the implementation of community behavioral health centers, and we've seen involuntary commitment bills popping up all over the United States.

(01:01:01):

In terms of direction, in direction, we, as disability rights activists, should be looking at how at every level we ensure that these initiatives are peer-run, disability-run. And that's going to be hard to do because you can do that and those initiatives can still be coercive. However, this is a good way to mitigate and work through a lot of the harm, meaning having peer supporters in emergency rooms when people initially are struggling in that moment, having a lot of us on the streets doing mobile support with models like CAHOOTS, Crisis Assistance Helping Out On The Streets, or like our mobile peer-run respite initiative where we meet a lot of people on the streets, or our peer street outreach. Looking at how, within institutions and hospitals, that there is access to every type of professional in those spaces, and also taking a critical look at how those environments operates.

(01:02:11):

There are certifying entities for every state institution and hospital. There are boards, there are medical review boards that approve everything in those spaces. So it does have to do with writing to your medical review board being critical at times. And it's also looking at the involuntary commitment legislation in your state and speaking out about your experiences. Whatever your experiences are, whether if they're negative or positive experiences, I want to encourage you to just speak out.

(01:02:45):

And I know that's a controversial statement because one voice is often heard more than others, which is talking about the benefits of these treatments, but I do think we need to reach a point where we recognize that in order for us to get to a place where we're actually critical of these systems, we actually have to engage in that uncomfortable dialogue. Right now, what's happening is we're speaking past each other.

(01:03:13):

I do think the disability community and psychiatric survivors need to think more about what family solidarity looks like, true family solidarity, not just parents being like, "I know what's best for my kid," but instead getting into a dialogue of, "You might want to do what's best for your kid, but sometimes the decisions you make may hurt your kid." We're looking at revelations around the troubled teen industry right now where parents put their kids in private institutions and pay $50,000, easy, a year or more to have their kids in a space where their bed is taken away unless they start to behave, where they are brought into harmful ideologies and many other things. And we see a lot of these abuses happening too in private and public institutions behind closed doors.

(01:04:07):

So there needs to be a solidarity where we acknowledge these abuses and we think about the promises of the disability rights, disability justice movement space, which is really like Olmstead, our right to community access, desegregated; and the Americans with Disabilities Act, our inherent rights in society to not be discriminated against on the basis of our disability.

(01:04:36):

And our movements need to come together. I see a lot of separation between the psychiatric survivor movement and the disability rights movement. And I do think there's a reason for individual identities, but there needs to be more cross-movement solidarity to work with a lot of these ideas.

(01:04:55):

That's a big answer, but I think that's... You look at the whole picture, everything that's needed, and some of those ideas where you have peer supporters working in these spaces will inherently have their issues, and I don't think just reforming all of these institutions is the answer. I do think there are institutions that need to close fully. We do need to fully abolish some of these for this too. And that's a hard one. When you say that, they're like, "Oh my God, now there's less resources." It's like, "No, no, no. We're going to build the capacity for everything beforehand in our community." And then by the time those institutions are dismantled, we will have the appropriate resources in place.

(01:05:44):

It doesn't mean that we will probably not have any institutions because there are still violent instances and violent things that happen in our society. There is still an accountability, a community accountability that has to occur at every level, and maybe there will still be institutions for a period of time that are centered. But over time, when we destigmatize and work away from the discrimination of discussing a lot of our distress and experiences, we will find more compassionate and understanding communities and be able to address a lot of the violent things that people perpetuate or experience and prevents them completely because we will have a community reaching in and being...

Maddie Crowley (01:06:34):

I think that is the perfect way to close out the conversation. And I want to thank you so much for sharing all of your wisdom and all of your insight and resources with the both of us, but also everybody listening. And yeah, I just want to thank you so much and also offer you a moment if you had any other thoughts or any other different things you wanted to spotlight before we close out.

Vesper Moore (01:07:04):

Absolutely. I think spotlighting the fact that there will always be different experiences when we talk about mental health. And I think you may feel like your experiences are disabling, you may feel like they're more of an illness or a sickness within, you may feel like they're more of a spiritual journey or a distressing journey. And I think holding space for a really holistic perspective.. And I think the other piece to that too is every person will have a different experience with their journey. People may feel psychiatric medications are life-saving and/or life-destroying, and those are two truths that we hold. People may feel similarly too about involuntary commitment. And again, we just have to engage in those difficult conversations.

(01:08:01):

Please, continue to reach into humanity and across communities, and I hope that you don't give up on you because I think that there's a lot of kind beauty that is inherent in the world.

Keith Casebonne (01:08:14):

A wonderful way to put it. Again, we really do appreciate the conversation. I think this has been a really wonderful talk and it's been a joy chatting with you today. So thanks so much again for being our guest. We really appreciate it so much.

Vesper Moore (01:08:32):

Thank you for having me.

Maddie Crowley (01:08:34):

Thanks so much, Vesper, for being our guest today on the podcast. We had such a wonderful time talking with you.

Keith Casebonne (01:08:41):

Yes, indeed. So please check out the show notes. You'll get lots of links and resources to things that we talked about in the episode.

Maddie Crowley (01:08:48):

Yeah, and while you're perusing those links and resources, take a moment and subscribe wherever you're listening as well. That way, you'll get notifications when new episodes drop, but it also helps us out to make sure that we reach more folks and people that might be interested in this kind of content. We're on all of our various podcast platforms, on YouTube, and on our website where we have both the audio recording but also the transcript of each episode at disabilityrightsflorida.org/podcast.

Keith Casebonne (01:09:23):

Yeah, and while you're perusing, if you feel like leaving us a review, we'd be very happy with that as well.

(01:09:28):

By the way, we will be taking a little break for another month or so, so look for the next episode coming probably in early May. Thanks again for listening, and please email any feedback, questions, or ideas about the show to podcast@disabilityrightsflorida.org.

Announcer (01:09:44):

The You First Podcast is produced by Disability Rights Florida, a not-for-profit corporation, working to protect and advance the rights of Floridians with disabilities through advocacy and education. If you or a family member has a disability and feel that your rights have been violated in any way, please contact Disability Rights Florida.

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You can learn more about the services we provide, explore a vast array of resources on a variety of disability-related topics, and complete an online intake on our website at disabilityrightsflorida.org. You can also call us at 1-800-342-0823.

(01:10:28):

Thank you for listening to You First: The Disability Rights Florida Podcast.