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Building a Grassroots Mental Health Movement (part 2): Haydée Cuza, PEERS

March 22, 2016

“We often go into movements because of [our own] trauma. Most people don’t just wake up one day and say, ‘Oh, I just want to change the world.’ There’s something that pulls us in.” – Haydée Cuza, PEERS

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 2 of the series, Haydée shares the work of PEERS and the attributes of an effective grassroots mental health movement. (Read Part 1 of Haydee’s interview here)

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

HIGHLIGHTS FROM PART 1:

Haydée Cuza: PEERS is a mental health consumer peer-run 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 in community—either through crisis, through maintaining our wellness, or just understanding our experiences. All of our work has the foundation of reducing or eliminating stigma and discrimination for people with mental health experiences. This, and peer-to-peer support, runs through all of our work.

Everyone that shows up at our door could be in treatment, if that’s their goal. [However] not everyone needs “treatment,” but they may need engagement with community and peers. For me that community is part of treatment. And we are all in the process in supporting our wellness. It takes a while to learn what you need to support your own wellness. So, providing that space for prevention, early intervention, and treatment are not separate spaces. It’s a continuum. And things like being clothed, housed, fed – basic survival – that’s on that continuum.

We all deserve to be our most authentic selves. And as a grassroots movement, we need to create a system that supports that. I want us all to be able to eventually operate in a culture/community that supports this. And by “authentic selves” I mean that we are truly connected to our emotions, our physical experiences, what’s going around us and inside of us. I think the other takeaway is that this about environmental justice, racial justice, the criminal justice 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.

Grassroots Change: What do you think the goals of a grassroots movement for mental health should be? Are there some specific policy changes or other milestones you’ve thought about?

Haydée Cuza: The pharmaceutical [industry] has the loudest voice in mental health right now. So my goal would be to eliminate that as the primary voice when we’re talking about mental health. I think clinicians are important; I think there’s a role for everybody. But when we make that the priority focus, that they’re present in every mental health setting, and we give more funding to the field of psychiatry, I think that all takes away from the individual experiences under the umbrella of mental health.

Also, if we are increasing [the focus] on psychiatry, then I want to also look at: Are we being culturally appropriate in serving people? Are we reaching the communities that are being inappropriately served, and supporting people who are culturally attuned to work in mental health communities? So, unfortunately, this is currently a “fighting against” instead of a “fighting for” situation.

The struggle is similar to the one for reproductive justice – there is more conversation and places where people can discuss options and then there is this other force where we are preoccupied doing defensive work, which takes away from the focus on maintaining and growing the positive change. I feel like mental health and reproductive justice both have that same push and pull.

So, I would envision a more inclusive mental health movement. Culturally inclusive, not just in terms of ethnicity, but living experiences: homelessness, foster care, people from privileged backgrounds. How do we all join in this movement?

Caregivers and loved ones of people in mental health crisis need to be involved as well. We need a joint movement, whereas right now it’s more of a civil war. We’re so busy fighting each other nobody is getting well. We are not reducing mental health crises. In fact, as homelessness increases, as the jail system is getting worse, it’s increasing. So I wish that the movement was broader and less divided.

GC: So one of the goals would be for more collaboration across different social movements?

HC: Yes, absolutely. Racial justice, reproductive justice, gender justice, sexuality – all of that is part of mental health. In part because when you’re an advocate in a movement, you also have to focus on yourself.

We often go into movements because of [our own] trauma. Most people don’t just wake up one day and say, “Oh, I just want to change the world.” There’s something that pulls us in.

GC: Would you agree that another tangible goal of this movement is creating more community centers like PEERS?

HC: Yes. We need more community-based places where there is food, sports, art, places to gather, peer support groups, AA-type meetings – community gathering spaces. We do have wellness centers, and Alameda County [California] is focusing on creating more, but I personally feel like they’re underfunded for what they’re supposed to achieve. People think that “peer staff is cheap staff.” That’s unfair – peer specialists deserve a living wage, too, they are professionals doing important work.

GC: What resources does that kind of movement require?

HC: I would like to see funding strategies that prioritize community-based services and reduce money that goes into hospitalization and criminalizing mental health and move it into peer-to-peer work and into the education system to support young people that may be having their first experience of suicidal ideation, hearing voices or seeing visions – avoiding the crisis and providing support services that validate their experiences. I would like to see the research money move away from pharmaceutical research and more into prevention, early intervention and healing. I’d like to see money going into more indigenous practices that honor cultures on a broader scale. I’d like to see a reduction in hospitalization and shift into holistic community-based programs that provide options for people, that provide resources of peer support, community engagement, resources for stability.

One of the things that’s interesting about mental health crisis is that we often know when we’re on the cusp of crisis, when we are heading towards a place of crisis – we feel the signs. We [need to] provide a support system around the stigma of those experiences, because the minute those crises start there’s shame. What if there wasn’t? What if that was something we taught in schools? “Look, this is something that could happen [to you or someone you know]. And when this happens, come here – this is how you can meet other people with the same experience.” If we started there I think we could have a completely different system. Additionally, when trauma happens, we have to address it immediately. Trauma requires a time for grieving and healing, and when you’re not given a space to grieve, it’s going to come out in other ways, in unhealthy ways.

But not all mental health is trauma based. The majority is, particularly in our society, because of how we define mental health. For many, it’s something different. Chemicals in our systems, what we eat, where we are raised, what water source we have, what is in the air- the reasons for physical symptoms such as asthma. It’s the same thing with mental/behavioral symptoms.

Mental health experiences are not always trauma based, but the movement that pushes against the peer movement, that pushes against a non-medical approach to healing, to finding ways to be in a world that sees you as having something “wrong” with you, defines everything as a brain disease. We can’t do that – we have to honor life experiences, historical trauma, genetics, systemic factors, all as contributors to the negative impact on wellness and wellbeing.

GC: Are you familiar with Adverse Childhood Experiences (ACEs) research? How do you think the ACEs framework relates to building a grassroots mental health movement?

HC: PEERS has not worked directly on ACEs, but I think fundamentally because of our political system and our economic system, I think it’s we absolutely need that reference for talking about things that affect children… [who] then become adults.

So when we are looking at the things that impact a child, we need to also look at the expectations that we have for adults to be fully “functioning.” And so, how do we make sure we are applying that same model within the adult system, and not being judgmental that a person is “not productive?” So I think addressing ACEs is necessary.

I also think to dramatically reduce childhood trauma we have to work on eradicating poverty, eradicate racism. But that’s a whole other grassroots movement!

GC: So in terms of resources, there needs to be a funding shift involved in all of this.

HC: Yes. And again, a language shift. We need the resources for a movement, a curriculum to help people shift language and attitudes around mental health. And a shift in funding to study cultural nuances that honor receiving of messages and experiences life from different realms, different approaches to when someone needs support in making decisions around their health, when someone needs hope and to feel validated.

GC: What do you think the benefits are of engaging the community in a movement in favor of the peer-to-peer model?

HC: This is where I would use the word “normalizing.” For the individual, they can feel that their experience is 100% valid, they’re not an “Other” and there isn’t something “wrong” with them. This is their experience, this is who they are, this is their life path, and there are other people who also have this experience. For people to have this kind of conversation together, it’s very validating. When you listen to other people who receive messages, and don’t identify as having a mental illness, just see it as their existence in this world, and to be able to sit in peace with your mental health – that’s the shift that happens in a peer group.

Also, wellness tools are shared – something that works for you may work for me. It empowers us to speak more about our experiences, so we feel that when we tell our stories we don’t have to carry shame after we share our story. We actually feel proud of ourselves for sharing the story and educating providers, the public, and making the space safe for all of us to share our stories and what they mean to us.

GC: How do you measure success?

HC: So we are actually in the process of attempting to do that. To me, that’s part of our grassroots movement. We are doing pre- and post- studies with our programs, to measure stigma reduction, increase in hope, and other things. We are designing participatory research tools and also using other people’s tools. So there are ways you can measure it.

But I would flip that around, because here we are, we want evidence-based practice, and we use medications in a certain way, and yet things are not improving for individuals or society. So how do we define evidence-based practice? And who is influencing decision-making?

On the other had, at PEERs we have seen improvements. We can see the change in people. There’s no way I would do a randomized study, I don’t believe in that for social programs. We have to come up with a better way. People have done randomized studies of medications, and yet we are watching medications ruin some people’s lives. For example, permanent Tourette syndrome, so a person can never be employed again because of side effects. So there are all of these negative reactions to the medication but it’s not used as evidence to say: “don’t use this medication,” it’s used to say, “we’ve suppressed the symptoms.”

I think that’s a political problem, much bigger than any problem I’ll help solve in my lifetime.

GC: What advice would you give to community builders who want to do this kind work? And how can people can involved with PEERs?

HC: Join our community! Join one of our wellness groups, invite us to speak and share our work. Visit our website and explore the free videos and podcasts we’ve produced. PEERS has a lot of resources and we are always developing more.

I would say, approach this work as a multi-pronged issue, not a single issue. Maybe in your community there’s a lot of grief, because there’s a lot of death? Maybe you think about dealing with that grief as part of dealing with the mental health of your community. Look at the underlying stuff that’s leading to this.

Also, keep the joy and the fun in it! Have art, have dance, have expression. Bring that into this type of community building. You also need to have a safe space. It can start in your living room. It can start in a psychiatric hospital, even! If that’s all you have in your community, peer-to-peer work can start there. You can connect people to community-based resources and other people. So start with what you have, don’t feel like you have to create something new. You already have people in the community with these experiences. Give them the space, funding, and resources to begin simply working with other people.

At PEERs, we are very accessible. Check out our website. We get an average of three phone calls a month from organizations interested in trainings, so call us for that. For implementing this in the work place, you can come to PEERs to learn about making the workplace a safe space. We have hired people with lived mental health experiences, everyone from the Executive Director to training staff

That is our philosophy, and we can help others do similar things with the tools we have used to build our own organization that supports peer-to-peer work. Our speakers’ bureau is really awesome. We provide stipends to help support transportation and maybe a meal when they come to workshops. Check out our drop-in WRAP groups, and our Transition Age Youth Group is also growing.