The transcript below has been edited for length and clarity. Listen to the audio of the interview here.
Leah Harris: Welcome to the Mad in America podcast. It is my honor and pleasure to welcome Celia Brown to the podcast. A psychiatric survivor and human rights activist, Celia is president of MindFreedom International, and has been a longtime activist in this movement. Welcome to the podcast, Celia!
Celia Brown: Thank you Leah. I’m so happy to be here.
Harris: Well, it’s great to have you. If you could please tell the listeners, how did you get involved in this work, and in the movement?
Brown: Well, I stumbled onto it by chance. I was living in a supported housing mental health program. And the counselors thought of me as “high functioning.” I hate that word, but they thought that I could go to a conference in Troy, New York, and it was called “The Self-help Vision Conference.” So I went to the conference and I met Judi Chamberlin, Howie the Harp, Joe Rogers, Ed Knight, a few people that were already in the movement. And they were talking about alternatives to the mental health system, and developing drop-in centers and a self-help consciousness, that everybody has a right to choice. I was in a program where that wasn’t happening. I had no choices, really, only the choices of what the program wanted me to do.
And I was just blown away. I remember saying to Judi Chamberlin, “Who’s allowing you to do this conference?” And they said, “No one, we’re empowered, we’re activists and we can do this.” And that conference transformed my whole life. I always knew that there was something different, there had to be something where people were talking about choices and talking about their rights. And here I found it.
I have to say that that experience really changed my life. I came back to my housing program and I started to organize. I organized some of the residents, we had meetings. Of course later on, the staff stopped that from happening. And then we met outside of the program and developed an inter-expressive support group. At that time, the language was self-help, mutual support, advocacy. That was the language back then. And that was 1988. That’s when I went to that conference.
And since then I got involved with becoming a member of MindFreedom. At the time it was called Support Coalition International. And I was getting all these different newsletters, like Dendron, just everything that had to do with rights. There was a listserv, that’s when we were doing so many listservs. We didn’t have social media yet. And that really helped me through my own recovery, because I wasn’t really feeling like I was recovering. I didn’t understand how I was going to move forward in my life, according to the mental health system or to my housing program. But then I met these wonderful people who had a vision already. You know, were doing consciousness raising, have been in the movement since the civil rights movement, you know, in the 60s and 70s. And I was just blown away. I was so honored to meet them. I said, “Oh my God, I can’t believe I’m meeting Judi Chamberlin, I’m meeting Howie the Harp.” And I learned from them, they were like my role models. And I read everything I could read about what they were doing. One of the “bibles” that is sort of out of print now, but if you’re lucky to have a copy in your home like I do, it’s great: Reaching Across. I don’t know if you’ve heard about that, Leah?
Harris: I’ve heard of it, but unfortunately I don’t have it in my library. Maybe you could tell the listeners a little bit about it?
Brown: Sure. So Howie the Harp, Sally Zinman, who’s also an activist, and Sue Budd, they wrote this self-help manual with different chapters like, How do you start a self-help group? How do you develop a “drop in center” (which was the language then)? How do you fundraise? It was just incredible. So they gave you tools back then if you wanted to do your own self-help group, if you wanted to do a self-help program independent of the mental health system. And now we have IPS, Intentional Peer Support, we have so many different tools and manuals. But then, I didn’t see that we had a lot. So Reaching Across was excellent to have.
Harris: Thank you, Celia. Having these kinds of organizing manuals and tool kits is so vital and so important. So we really honor them for that early work and what they were able to do in that regard.
Brown: Yeah. Yeah. And you know, we were involved at that time in teleconferences to talk about all of this activist work that people, Judi and others were doing. And it got people more involved. And I respected the fact that they were doing things that were outside of the system. They were creating a new way of doing self-help at the time, that had nothing really to do with the system. It had to do with their experiences, and how we can change the world. How we can create something for ourselves. I just thought that that was really powerful at the time.
Harris: And so you went on to do your own organizing and create these self-help groups. When did you start to get actively involved in human rights work?
Brown: You know, I went to the Highlander meeting. This was in the early 2000s. We were starting to see a shift in mental health legislation, that outpatient commitment was coming over nationally. And there’s some people in the movement, including David Oaks, Janet Foner, Gayle Bluebird, and many who said, “Let’s get together and figure a strategy on how we’re going to fight this.” So we were there for like two days, two or three days in Tennessee at the Highlander Research and Education Center. And it’s very significant, because the Highlander Center is where Martin Luther King and Rosa Parks went to strategize, and there were pictures all over. And they had these rocking chairs there. Some people said they were uncomfortable. But it was just telling to have these rocking chairs. When you’re in a rocking chair, you’re going back and forth. It’s sort of like a meditative state in some ways, to be thinking about all these different issues, you know. And from there I started to really organize, and Judi Chamberlin was there as well. They always were role models to me, even to this day. And I was always listening to them and trying to figure out how do we move forward in our own rights, our own human rights, our own recovery, our own healing? And they gave the blueprint to me on how to do that. And so I just learned so much from them, and I took what I learned from them into the next era, into doing more community organizing with people.
Harris: How did you then get involved with the human rights organizing at the UN around the Convention on the Rights of Persons with Disabilities (CRPD)?
Brown: David Oaks, the former director of MindFreedom, was trying to get Consultative Status for MindFreedom. Which means at the United Nations, you could consult and advise some of the UN bodies at that time. And so he asked me, and believe it or not, he asked Kate Millett, who’s a famous feminist writer and activist, who was also a member of MindFreedom. And I had never met her. I didn’t know anything about her. And I said, “Oh my god, so here’s another icon.” So we went together to the UN to argue that we really needed a Consultative Status for the organization of psychiatric survivors. Kate was very instrumental, and I helped as well. And at that same time, the CRPD was coming up for review. And for your listeners, it means a treaty, and it has several articles that are legally binding. So I was there as a MindFreedom representative. And that was just such an honor for me to be at the United Nations. And I also brought other people to come as well. So it wasn’t just me. It was other members who wanted to have the experience of the UN.
And then it was the World Network of Users and Survivors of Psychiatry, and they were also leading the charge, mainly Tina Minkowitz. And so we all worked together as a coalition. We also were working with people with physical disabilities, like the World Blind Union, the World Deaf. And we understood that their disabilities were going to be more visible, more understood than ours. So we worked so hard to have them understand what it’s like to be a psychiatric survivor; what it’s like to go through the mental health system, and not have a choice most of the time. And that your rights may be taken away from you. And we also said that it could happen to you: you could have a mental health issue, if you’re blind, deaf or in a wheelchair. All of this could happen.
They started to really understand. We said, “We’re going to go in as one. We’re not going to go in as, ‘Here’s physical disabilities over here, on one end. And here’s people with, the language was, ‘psychosocial disabilities.'” That’s the term at the UN. We weren’t gonna let the powers that be separate us. “Oh wait, that’s ‘mental illness’ and that has nothing to do with physical disabilities.” And that was the going trend. We said, “No, we’re all going to go in together as a coalition.” And we did, and it was excellent. There were several meetings at the UN and they had what they called “side events.” They’re like workshops that anyone at the UN body can come to. And it was usually in the afternoon, after morning sessions. And I would talk about the ADA (Americans with Disabilities Act) and having reasonable accommodations. And it was just an incredible, incredible experience.
What I wanted the listeners to know is that the Convention on the Rights of Persons with Disabilities was written by us. It wasn’t written by people who didn’t have a disability. So every article, we looked at and changed, or commented on. I’m really proud of this, and I just think this is one of the groundbreaking legislations of our time to have this Convention, and it’s really for people all over the world. But it can be used in the U.S. even though it’s not ratified here.
Harris: One of the articles in the CRPD is Article 12, which is about equal recognition before the law, and it’s really about legal capacity, which as you know, is a huge issue for those of us who are labeled with ‘mental illnesses.’ There’s some push, as you mentioned, going back 20 years now, to reduce our rights and to involuntarily commit us whether outpatient or inpatient. Talk a little bit about that article, because as I recall, it was one of the more challenging ones to get consensus on.
Brown: Yes, it was very challenging. And the reason is because as you know, for years, people with psychiatric disabilities were, and are still today thought of that they cannot make a decision, because of a perceived disability or “mental illness.” So you have no rights to even make your own decisions. This says that even if you’re in a condition, an emotional condition, you still have the right to make a decision. And that we wanted to make this a part of equal recognition upon the law: That if you needed support, you would do supported decision-making. Like someone, whoever you trust can help you with a decision: moving into housing, voting, or whatever it is. That it shouldn’t be what they call substitute decision-making or guardianship that just based on you having a mental illness, you no longer have the right to make any decisions in your life. And that was a strong part for people who were there who are psychiatric survivors. We really wanted to make sure that that didn’t happen to us or anybody else with disabilities.
Harris: Thank you for that. And again, even though the U.S. has not ratified this, which is very unfortunate, we can use this as an organizing tool in our advocacy and activism to resist efforts to take away our rights, to reduce our legal rights.
Brown: Yes. One other one I just want to mention that we worked on really hard on is Article 17, and that is the right to mental and physical integrity. And what that means is that we have a right not to get, for instance, shock treatment. That it is our right to say, “That is going to compromise mental and physical integrity.” I just think it’s so profound, that language. There is so much different language at the UN that we don’t really use outside of it. But here I just think it’s very profound and I just want to thank everyone who was involved with it. Tina Minkowitz led the charge, MindFreedom, all the other disability organizations. I just feel so fortunate to have been a part of that.
Harris: I think that this is so incredibly vital in these times. It always has been, but especially in these times where there’s so much more interest in things like forced antipsychotic injections and you know, I wrote recently about pills with microchips, you know, which really violate the integrity of the person. I appreciate that this gives us another set of tools and language with which to organize.
You know, obviously we saw a huge paradigm shift in our country around 2014 when Michael Brown was murdered [by law enforcement] in Ferguson and it really launched the entire Black Lives Matter movement. I remember at the time, a lot of us were talking about how can we be in solidarity with that movement? How can we figure out how to integrate those struggles into the work that’s done with psychiatric survivors and people with disabilities? And it was right around that time that the whole idea of ‘Surviving Race’ as an organizing principle and as a movement came to be. And so I’d love for you to talk about that from your perspective.
Brown: I was so horrified by what happened to Michael Brown, you know, just sitting in my living room watching it on television. And I just felt like, ‘What can we do?’ And then I started to think of my son, and my nephews. What if they go through this and they don’t survive? I was really afraid, especially for my son, he’s a young Black man, and everyone else. And then I started to think about, what can we do as a movement, because we’ve done so many incredible things, to be a part of this time in our history? So yes, Black Lives Matter came, but what about our movement partnering with them, and any other coalition that wants to fight for this? And I was so happy that you and other activists collectively said, “We have to do something about this. This isn’t right. Let’s get involved.” So we created Surviving Race as a Facebook page. But also we do have monthly calls to get outside of social media, so we can all talk to each other. And we also were thinking, you know, how can people of color — because it’s always been, and I’ve heard this from everyone, the movement is basically white. And how do we work together? A lot of us have gone through similar things, you know, forced shock, forced medication — all of this collectively, we all go through. So what’s keeping us separate is the race issue. And all of us have gone through different experiences and that’s okay, but how can we get together?
So we had several dialogues with people who are white who are in the movement, and people of color. And I think it was a start to do it, but I don’t think it really brought us together. It helped us get dialogue, but we didn’t have the accountability that you talk about and helped introduce that to me, Leah. Restorative justice, things that have been maybe in the criminal justice system, but not in not in the mental health survivor world at all. And I’m just really excited about looking at that to heal some of the things that have happened in our movement, and also to make people accountable in our movement as well. So I think this work is just beginning, and I’m really looking forward to all of us working on that and reading more about it.
Our movement needs to be more mainstream than it is. And I know we’ve been doing this for a long time. We did manage to get into the media at some points in our movement history, but for some reason it’s not totally happening. Except I’m really thankful for Mad in America for really bringing out a lot of the different issues that people are facing. So I’m really, I’m grateful for Mad in America. I think that’s a really important tool. And different articles and different perspectives on the mental health system, on drugs and everything else. I just think that it’s great that’s there.
Harris: I so appreciate that, and you know, this idea that it’s a matter of social justice. I think there’s so many opportunities to build bridges, because I’m sure most of our listeners are aware, but the vast, vast majority of people who are killed by the police are people of color who are experiencing some kind of a crisis. Shaun King, other folks have sort of written about this, that calling 911 on a person in mental health crisis can be a death sentence, if you’re a person of color. So I think there are so many opportunities to build bridges with the movement against mass incarceration, with the Movement for Black Lives. And let’s face it, you know, the vast majority of people who are the most oppressed in the mental health system and in the criminal justice system are people of color.
Celia, I wonder if you can talk a little bit about your vision for the conference. What are we moving towards? Maybe you could share your vision with the listeners.
Brown: Sure. We want to have a Surviving Race conference and bring people together. I think it’d be more like a retreat, like a strategizing conference. I think our vision is to deal with the issue of police brutality, you know, mass incarceration, people in our mental health system. And I want it to be educational for people of color. I think sometimes because of the racism and psychiatric oppression, we’re not really able to fight as we would like to fight. It’s trauma to always be looking over your shoulder every minute, if you’re a person of color in this country. No one deals with it, but it’s trauma. How do we heal from that, for one thing? And then how do we create a social justice agenda? And I think all of us can work together to do that and produce something that can go into all of our local communities. Even though it’s a national conference and we’ve gone to many of them, but that we come out of this conference and how do we do this? How do we use strategies and different approaches in our local communities? I really think the answer is local communities.
The conference is going to be in Charlottesville, which is historical, because of what happened there on August 13, 2017 with the white supremacists and the Nazis. And it was a very horrible time in our history. And I think as we move forward, whether you’re labeled with a psychiatric disability, we’re all subject to traumas we never thought we would even deal with in our time. And we have to have approaches on healing and social justice. I think that is the future for our young people. I think we are people that can lead youth, and also listen to youth on what do they need now, and then tools that we could share with them, and tools they could share with us. How do we move together, rather than ‘I know more because I’ve experienced more as an adult’? But ‘You also know more.’ My son knows more, and I’m sure you also listen to your son. How do we listen to that and incorporate that into something that we can move forward in this world?
Harris: One hundred percent, it has to be an intergenerational agenda. And for folks who are white in this movement and want for this to be a truly inclusive movement, not to sort of integrate people into a movement that’s mostly white, where they may not feel comfortable. What would be your counsel to folks who are white and want to do better?
Brown: I would say that first of all, there’s simple things. It’s just really listening, learning about our history, because our history is all of our history. When I was growing up, I learned a lot about everyone’s history, the Holocaust, civil rights history, slavery, everything. I think from that stance, I think we need to be reading or looking at some of these issues because it’s all a part of our history. So that’s one thing.
Second, when there are opportunities for a person of color to be on a panel or to be keynote, really be thinking of people who could be a part of that panel or conference or workshop. I think sometimes we don’t even think about that. So we need to be multicultural, when we’re asking people to speak or deliver a message, not just saying, “Oh wait, we need people of color.”
We’ve already done that and it’s not been helpful. So I think that’s the second thing that we may need to do, and just really continue to dialogue and deal with what’s now. What are you feeling now? What can a white person learn from us? And what can we learn from them, too? How can we work together? Because all of our existence, our human existence relies on all of us.
Harris: From what I’m hearing you say, it really sounds like you’re speaking to the spirit of solidarity and also centering those most impacted. Because overwhelmingly it’s people of color who are most impacted by forced treatment, forced drugging, mass incarceration, and police violence. As a Jewish person who benefits from white privilege every single day, this is also my call and invitation to folks in the movement to really think about how can you not just invite someone to be on a panel, but to really center the leadership and the perspective. Even if it’s not what you like to hear. To listen, as you said.
Brown: It’s uncomfortable for all of us, but at the end of the tunnel we’re gonna be coming out with some really good healing and solidarity together. And I think us as a movement, we’re in a position to do this. I really believe that we could do it.
Harris: Absolutely. And I think that is what we bring. And I think that’s also what Black Lives Matter has really done incredible work around, not just ‘How do we resist these oppressive forces?’ but how do we create structures that are not based on punishment but as you said, on accountability and transformative justice, and all these principles that have been put forth by us. And also really with the leadership of folks like Incite Women of Color against Violence. How do we do this differently? I think that’s one of the things that gives me a lot of hope.
Brown: Yeah. It gives me hope too. One other thing I want to say. You said, where are we moving? What do you see the movement doing really well in? And I thought about it this morning, and I think it’s the Hearing Voices Movement. I think we’re really getting momentum in this movement. It’s excellent. And I see that not only people who do have visions and voices, but there are people that don’t hear that, who are trying to understand, “What do people go through when they’re in an altered state? What are some of the different healing approaches that we can all learn from?” I think it’s fascinating. I really do. I think that that’s an important piece to be involved with, and to learn from.
Harris: Right? It’s about learning and understanding those experiences. And also seeing the potential visionary aspect of hearing voices, right? And how might we all benefit from those gifts when we’re not pathologizing or shutting them down. So I absolutely agree with you that there is something really, really powerful and potent there that continues to be building as a movement.
Brown: Yes. Yes. And the work that you’ve done on trauma has been excellent. That’s something that people should be more aware of or reading about. Of course, Intentional Peer Support. And I remember when Shery Mead was first conceptualizing what Intentional Peer Support would be, and it’s gone so far. And I’m gonna mention the WRAP plan. I know some people have issues with it. But the Wellness Recovery Action Plan, I remember no one in the system would use it. And now you have to have that in, when they come and they do an audit in the mental health system: Does that person have a WRAP plan? And kudos to Mary Ellen Copeland for doing that. So we have so many different approaches and tool kits that we just really need to get out there more and share with other people. I just think we’ve done incredible work over the years. And creating another tool kit for people. Community accountability, all these different terms that we’re not really used to in our movement that now we can embrace, and figure out how do we use that to help us move forward.
Harris: Every movement has its challenges. All of that is part of, I think when people live with internalized oppression, and issues of power and privilege. And I think the more that we can just be really open about that, the better, and the healthier a movement is, I think, when we can talk about those things openly.
Brown: But it’s ultimately gonna heal all of us. And I think we’re at the forefront, to create this for ourselves and then to put it into the world. Cause I think we need to get outside of us, and into the community because believe it or not, people are going to be suffering from trauma. They’re going to be head on with the mental health system and where will we be? Can they reach us beforehand, when they’re being forced or when their rights are being violated? They need to know that we exist. This is what we’ve gone through. Here are our stories. I’m looking forward to that, to making it more a part of the world, a part of the mainstream. It’s really separate. It needs to not be separate.
What do we give family members, like a parent or a mother whose son or daughter is going through something? What kind of tools would we give to them? We could say, “Here’s what we’ve done.” Here’s some tools that you can share with your loved one, that’s other than what we always use, you know, ‘treatment models’ and that kind of thing. Here’s some other models. I’m looking forward to that day, and I hope I get to see it in my lifetime, Leah.
Harris: Right? I know. We’re looking at not just all the issues around racial justice, but climate justice. And the amount of distress that is happening now and that is coming. And we as a movement of people who have created alternatives to the system, which will not — even if the system was great — be able to meet the needs that are coming at us with climate change. So in the face of all of that, which can feel really overwhelming, there’s a lot of grief and fear that people are feeling. What are your words of encouragement and support in these times?
Brown: I would say, let’s build community. Let’s build each other up, one by one, person by person, group by group. We’re in a time that we need so much healing, and the healing leads to social change and social justice. This fight, I think we should continue to have, because it does lead to healing and really living, you know, an authentic life.
Right now our youth are suffering. They don’t have the tools to fight off feelings of suicide. I’ve seen this in my whole family, and try to be supportive of them. Where do they go? And it can’t be just, “So now you have to be locked up.” What are some tools — why is the person even thinking about suicide? What is going on with that person and in conjunction with who they’re around in the community, how does that happen?
I’m really concerned about it. Like if things aren’t going well in this society or your family or wherever, and then you internalize all of this, how do you get through that? What are we gonna do to help you think, “I want to be here in this world, and I want to be here on my terms. And how do I heal?” What can we bring around the people who are feeling this? Incidentally, there’s Black youth who are committing suicide at twelve years old. I think that’s a tragedy. Why would that happen? And I think we have to ask ourselves, “What are we doing?” And we can’t hide behind “risk,” this person’s “at risk,” and superficial ways that they think people are going to get better. I think we have to work through that and we have to have the patience in this fast-paced world.
Harris: Glad you brought up the issue of suicide and how it’s increasing not just across all age groups, but across all races. Alternatives to Suicide came out of the Western Mass Recovery Learning Community, and has since taken root in many other places. It’s an opportunity for people to be together and talk about suicide in a way that they don’t need to be afraid of having someone freak out and call the cops on them. It’s a really safe space that does not exist in suicide prevention, where there is such a coercive function behind it. And there’s also a lot of resistance. It’s threatening, right? It’s threatening when we get together and take charge of talking about suicide and finding our own reasons to live.
Brown: Right. And in terms of climate change, what I learned from climate change is the incident that happened in Puerto Rico [Hurricane Maria] and I learned that climate change is tied to all of it. To race, to privilege, all of it. It took them a while to even get aid. They tried to blame them for the tragedy that they had nothing to do with. Okay. And I was really horrified by that, Leah. And that’s the first time I really, really looked at that. “Oh my god, what is the government doing to help the people so they can help themselves? It’s not a handout. We genuinely need help, you know?” And I just felt like people were not getting help and they were fighting to get the help they needed. People weren’t having water, you know, just clean water. Everything was destroyed. I’m just giving you one example, we’ve had many other tragedies after that, but that struck me. And then what happened is everyone came together and were sending donations, and people were coming in and helping out. And that’s what helps bring us together. But when there’s something like this, “Oh they’re, you know, they’re a person of color. We’re not gonna give as much as we would give to another country that had this happen, or another place in the US.” And that taught me a lot. So I definitely want to work with [the] climate change [movement]. I think we all need to be doing that. The youth, I think, are leading the way in this. I want to follow them and see what I can do to be supportive, or any ideas I can give for climate change. I think that’s the next wave. I do.
Harris: What I hear you saying in all of that, is that individualistic solutions have never worked, and even movements that are “staying in their lanes.” This is no longer a time where that is a viable way of working. And figuring out ways to build bridges, to find common cause, to be in solidarity across movements and across generations is really the way that we’re going to — if we’re going to — get out of this climate catastrophe that we’re in, and this general time of such extreme instability and unrest. It’s gotta be together. None of us can be in this alone, whether as individuals or a movement. I’m really looking forward to the possibilities with Surviving Race, and thinking about how can we break down some of these silos and connect.
Brown: Absolutely. We need to find resilience. That’s another word that we’ve been using, and we’re all going to have to do it together, as you said, and I’m looking forward to that, you know?
Harris: Thank you so much, Celia. I am as well! And I so appreciate you taking time to be on the podcast. And I really want to express my gratitude for all of the pathbreaking work that you’ve been involved in, in so many different arenas. So thank you for that.
Brown: Thank you so much.
MIA Reports are supported, in part, by a grant from the Open Society Foundations