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Building a Grassroots Mental Health Movement: Haydée Cuza, PEERS

March 7, 2016

This is about environmental justice, racial justice, the criminal system, gender justice, sexual justice, class justice, health justice, and food justice. We would be a healthier society, both physically and mentally, if we focused on the caregiving of our society. – Haydée Cuza

Haydée Cuza is the executive director of Peers Envisioning and Engaging in Recovery Services (PEERS) in Oakland, California. PEERS is a diverse community of people with mental health experiences. They provide community-based mental health programs that honor diverse experiences and eliminate stigma and discrimination. In part one of this two-part series, Haydée shares the work of PEERS and the need for a multidimensional grassroots mental health movement. 

Grassroots Change: What is the mission of PEERS?

Haydée Cuza, Executive Director of PEERS Photo credit: PEERS
Haydée Cuza, Executive Director, PEERS
Photo: PEERS

Haydée Cuza: We are a mental health consumer organization and we provide peer-to-peer work focused on wellness. We honor the broad range of mental health experiences, as well as supporting one another through crisis, through maintaining our wellness, or just understanding what’s happening happening [with us]. We work with caregivers, other providers, and political circles to create a foundation for collaboration and community.

There’s so many ways we talk about mental health, and a lot of stigma around mental health. So all of our work has the foundation of reducing or eliminating stigma and discrimination. This, and our peer-to-peer support model, runs through all of our work: The way our staff are trained, the way we set up our support groups, and the way we do our art workshops. Everything is focused on peers working together and sharing space with one another.

GC: What is a “consumer mental health organization”?

HC: I don’t use the word consumer too often, because “consumer” implies someone who has been hospitalized or used the public mental health system, whereas we may touch people who have never been in the public system. They [may] have private insurance, or insurance through their disability, and may never have been hospitalized. They may have experienced receiving messages, but see it as a gift and don’t identify themselves as being in crisis. They’re all a part of this community, and we definitely work with people who are consumers and go through crisis, too.

GC: How did you come to work in this field? What motivates you to work on mental health stigma reduction and community building?

HC: From the beginning of my career, I’ve been focused on mental health, mostly in the foster care system. I was formerly homeless and in foster care as a teenager, and attempted suicide at 14. I feel that that has been a foundation for my professional choices and even my educational choices.

I started out as an advocate in foster care. I was introduced to the peer-to-peer format, where as foster youth we supported other foster youth. I started out in mental health work long before I knew I was in mental health work. I came to PEERS as an associate director. I met the former executive director and loved her, and was looking for work that was meaningful and I knew wanted to work with her!

My [Ed.D.] dissertation was focused on the impacts of racism on high school attainment and what it means when you are in a community where the police are the primary presence and you feel racism from your teachers, and the trauma that comes with that. Again, I didn’t go out and say “I’m focusing on mental health,” but that became the thread of what I found.

GC: Do you see any current grassroots movements for mental health?

HC: I was raised in a very political, grassroots family – you know, you hit the streets, you go to rallies, you talk on soapboxes – and I’m not sure that that exists in mental health right now. I do feel like there’s a movement, but I think it looks different than some grassroots movements because there has already been a foundation for the mental health consumer movement.

Decades ago, people fought against locking people up—the asylum model. Then that movement split into two directions. Now you have people who advocate for absolutely no systems—no medications, no hospitals. And then you have people who went into the system, trying to make change from the inside. You see that in Alameda County (California), and it’s why PEERS is able to exist.

PEERS started out as a small grassroots organization, with someone saying: “I’m not getting the services I need, so this is what I’m going to do, to make that change.” But after being funded by the county, or others, you are no longer your own movement—you are responsible to a funder.

I do feel that Black Lives Matter (BLM) is focusing on mental health with their concept of love in the way they talk about the movement. It’s not about individual achievement; it’s about community equity. So, the BLM movement may be addressing mental health in a nontraditional way, but they are definitely supporting the mental health of the people and communities.

GC: In your own vision, what would the ideal grassroots movement for mental health look like?

HC: I think in this current climate we have to stop fighting against, and start moving towards changing our language about mental health. We need to start reframing it. All of us are touched by mental health and there’s a spectrum, just like physical health. We need to pay special attention to those on the spectrum who go into crisis, whose lives are on the line. And not just with the measurement: “can we work or not work?” It’s not about being a “productive member of society.” It’s about being able to fully love and accept your authentic self.

There are cultures in which people who receive messages are considered the messengers in the community, the ones who carry the voices of other lifetimes and higher planes. If we honor those people, they will see themselves differently and operate in the world in a way where they can stand fully within themselves. And then, there are other people that receive messages out of trauma and the messages are the survival response to trauma triggers.

We have to address those underlying issues of trauma and poverty. Some people receive messages because they’re starving. Because they’ve been on the street for years, they haven’t eaten in five days, haven’t had a full meal in months. Then they’re going to go into what looks like psychosis, what looks like delusion, but we’re not treating that. Oftentimes a doctor sees someone like this in the hospital for 15 minutes and says, “you’re acting erratic, let me put you on this medication.” If we fed people and housed people first, and addressed the crisis first, we would eliminate some of the medication need.

Beyond that, I think a grassroots movement needs to really partner with economic justice movements, food justice movements, racial justice movements, gender justice movements, LGBTQ justice movements, and housing justice movements. You can’t have any of those without mental health, and vice versa.

GC: So a grassroots movement for mental health would address both prevention and the underlying causes of mental health crises?

HC: Yes. And also honoring that when you experience trauma it’s not about suppressing the reaction to that trauma, it’s about moving through and addressing the trauma itself. You have to grieve, you have to be angry, you have to cry, scream, isolate – and then move through and live again, feel connected to yourself again. Because with trauma, you get disconnected. You have to grieve that you are no longer that person who was safe. You now have this other reference in life.

GC: Let’s talk about the underlying causes of these mental health experiences. What would it look like to have a movement that bridges prevention and treatment?

HC: I always put the word “treatment” in quotes. Everyone that shows up at our door could be in treatment if that’s their goal. But maybe not everyone needs “treatment,” but they do need community. For me that community is part of treatment. It takes awhile to learn what you need to support your own wellness. So providing that space for prevention, early intervention, and treatment are not separate. It’s a continuum. Basic survival—things like being clothed, housed, and fed—are all on the continuum.

There are some real practical things, especially when people are in crisis. One of the best things is a team approach: People with lived experiences to help others avoid the crisis before it happens, or plan for it if it does. How do we help prevent you from having to be hospitalized at all? People can lose their housing because of an unplanned hospitalization, so what if you had a team that came in as you approached hospitalization and helped you plan for it? So prevention and treatment are a continuum.

Also—and this is a policy goal—I think anyone who qualifies for disability should be given two case managers who can tell them what resources they are eligible for and help them get connected to these programs. I feel particularly, for mental health, that family members or loved ones have to be involved. It needs to be a team.

GC: So what is your takeaway message about the movement for better mental health, and the role of grassroots engagement?

HC: We all deserve to be our most authentic selves, and as a grassroots movement, we need to create a system that supports this. By “authentic selves” I mean that we are truly connected to our emotions, our physical experiences, what’s going on around us and inside of us. The other takeaway is that this is about environmental justice, racial justice, the criminal system, gender justice, sexual justice, class justice, health justice, and food justice. We would be a healthier society, both physically and mentally, if we focused on the caregiving of our society.