Jenny Holzer, Selection from Survival Series, 1983-85
There are some people who can speak with passion or conviction about sport, others about film. This being the Bay Area, many people can do this about food. But there are few that have that nerdy attention to detail and fascination with all things mental health. Who can speak at length about diagnoses, stigma, programs available and language used. Who get excited about the work that can be done in this area. Lisa Smusz, Executive Director at PEERS, Oakland, is one such person.
We met recently to talk about the work of PEERS (which Lisa herself calls a ‘disruptive innovator’) but which is, in short, an organization run by people with mental health issues for people with mental health issues. Their programs stretch across peer support and education, TV and radio (excerpts from which appear in this piece), poetry slams and even art exhibitions (I’d come across PEERS through the Exploratorium’s current exhibition, The Changing Face of What is Normal). What follows is a very abbreviated extract from our conversation:
Joe’s Daughter: Let’s start with the major difference that I see between PEERS and much of what’s out there for mental health, which can fall into a frustrating, oppressive, or condemning tone. PEERS talks about and offers a language of hope, recovery and compassion and I’m wondering where this comes from.
Lisa: If you go to our website you can find a list of our values. Some of this comes out of where the organization started in 2001. It was founded by Tracy Thode (now Hannigan), because as a consumer of mental health services, she wanted to see a mental health organization that was run by and for people who have had experienced a mental health issue in their life and recovered—to get that message of hope out there. She wanted to create an organization that would provide the tools that people could use for their own recovery and wellness, in order to have their own choice and be the guiding force of that process rather than just the recipient of services. The main tool for this was, and still is, WRAP (Wellness Recovery Action Planning), which was itself developed by Mary Ellen Copeland on the east coast.
WRAP is a group facilitation method and is led by somebody who has had lived experience of having a mental health issue and has recovered. People have the opportunity to examine what they look like when they’re well, what their triggers are, what they need to do a daily basis to keep well, what is needed on a weekly basis, what are early warning signs and how to respond and what to do when things are going in a worse direction. Also, to decide in a worse case scenario, if there is a mental health crisis, who do I want to take care of me, what kind of things are really helpful for me, what things are not helpful for me, so even in the moment when someone might not be able to express themselves or make choices for themselves and are really unwell, their voice is still there.
Joe’s Daughter: Because they have already advocated for themselves.
Lisa: Yes, they’ve done it ahead of time. It’s almost like an advanced medical directive only it’s much more detailed and the focus of it is: “this is what I look like when I’m we’ll and this is how I’m going to maintain it.” It’s not about symptoms and diagnosis. WRAP has a set of ethics that the people who facilitate it have to abide by – hope and self-determination amongst these. All the values found on our website are really founded on that.
WRAP came out of Mary Ellen’s research studying what was working for people who have had a mental health issue and had recovered and had managed to stay well and thrive in their life. What were the things that were really key to their recovery? And those were the elements that she found to be critical across the board in this group of people. Those values ended up being the basis of this organization, because WRAP was the first tool that we used.
Joe’s Daughter: Can WRAP be accessed by people who are in a state of wellness, can it be used by those who are susceptible to developing a mental health condition. Or is it just accessible to people who are already undergoing symptoms?
Lisa: All of our groups are open to everybody at any point in their wellness. How quickly someone can move through making that plan is very individual, but there is no judgment associated with it, and no sense that you have to make this criteria, that criteria, before you can come into the group. We believe that anybody can work on his or her wellness at any point in time.
Joe’s Daughter: I find that approach unusual. Our inclination when are we are well is not to work on anything. Then if you’ve had a breakdown, you are in the system. That idea of the need to be working on your wellness so you don’t get to that endpoint doesn’t abound. And similarly, if you experience a mental health issue, usually you don’t get to be around people who are well. The two are separate.
Lisa: Yes, it’s polarized. And it sets up a dichotomy in how you see yourself. It’s an “us versus them” situation. It’s the people who are well versus the people who are ill. And the reality is that every single one of us needs to be working on our wellness all the time. Mental health is not a this-or-that category, it’s a continuum. All of us can be at any point on that continuum at any point in our life. Someone who is currently in a state of not being well might in a different time or place be a person who is extremely well. Someone feeling extremely well might at some stage feel not-well. And somewhere in between. It’s this continuum. Its not that you achieve wellness, but wellness is a state of being.
Joe’s Daughter: And then you are done.
Lisa: And then you are done. That sense that everything is great and will remain so. There is this misconception in society that someone who has never had a mental health issue, doesn’t need to worry about it, doesn’t need to do things that are proactive in maintaining a state of wellness and wellbeing.
Joe’s Daughter: This is something that I’ve thought a lot with my mother. There’s a stage that she got to–she didn’t show anything, nothing I remember–then she got to her mid-50s, and something really shifted for her. So in my head, there is something in me that might mean that I have an inclination to go down that path. But what do I do with that? I’ve read around how to maintain wellness: I know I should be in company, I know I should exercise, I know I should contribute to something bigger than myself, and have a gratitude practice. But the big shift in my thinking is getting to this idea that I have to do this now, so that if I get to that point that she got to I’ll have a support system, I’ll have tools, I’ll know what I want. I don’t know what she wants, because it’s hard to have that conversation now: How do you feel about being in-resident treatment, how do you feel about medication, how do you feel about recovery?
Lisa: What would your choice be? What works for you? What doesn’t work for you?
Joe’s Daughter: And it’s very hard to have that conversation now. And I’ve spoken to my partner about it. Not a living will but this idea that I want you to know and I want me to know now what that looks like. What am I ok with you doing on my behalf?
Lisa: And that’s exactly what the WRAP program is. The crisis plan – it’s that piece. If I should ever be in crisis, if I should ever be in a position that I can’t make decisions for myself, these are my wishes, this is what works for me, this is what doesn’t work for me. I’d like to transition back and end on a very hopeful note as the WRAP plan includes a post-crisis plan as the very last piece. That if you have a crisis you are not necessarily going to stay in crisis but you would be in a transitional point, and there’s a point at which you transition into crisis then out of crisis and into recovery again. Its possible to resume a normal life.
Joe’s Daughter: Do you see that happening? There’s the program and people who go through it, but what does the reality of that look like. Do you see people come through this? Do they get well? Do they recover? I always have that question. Do people actually get well? And if so, how often and how do they get well?
Lisa: The statistics are really interesting. In the United States, and I’m not sure about the statistics in the UK, 1 in four people in any given year will be diagnosed with a mental health issue. But yet if you look at that in the course of a lifespan one in two will have some kind of a mental health issue. So at some point in your life either you or me, are going to have some kind of a mental health issue. It really impacts everyone. But if you just look at the sheer numbers, of 25% of the population at any given moment, and half of us over a lifetime, right there is your answer. Do people recover? Yes, because otherwise no one would have a relationship, no one would be having children, this country would grind to a halt. The face validity alone tells you that this has to be happening. But it’s this great big secret. That’s the thing that’s really fascinating: why is recovery and hope a secret?
My first experience of this was in graduate school when I was training to be a licensed clinician and a big part of that training is psychopathology – learning to diagnose mental health issues. But the interesting part is that no one talked about anyone getting well, it was always that focus on how do you recognize a mental health issue, how do you diagnose it. Then of course, we learned about treatment, but this didn’t seem to include that assumption the person would get well.
Joe’s Daughter: There’s never that next part of the story.
Lisa: It’s just continuous treatment. When you are in psychopathology classes, they show you films of people who are experiencing acute distress. The idea is, of course, that you can recognize what that looks like in real life, not just in a textbook. But they only show you pictures and films of people who are in acute distress. And then you go into your internships, which usually means psychiatric wards or places where people are often acutely ill, so all you are seeing are people who are very ill. You never see people who have recovered. And no one ever talks about it. No one ever says “no one recovers” but that’s the unconscious message that you receive as a clinician in training. Now that is an incredibly dangerous thing, because you get very good at recognizing pathology and how to continually treat someone, but you never have the framework of expecting wellness and recovery. And as a clinician, by the time I got my license, I was in a place of hopelessness about it.
It’s horrific when you think about it, because that’s the point at which someone is coming to you because they are not able to hold hope for themselves. If I’m the clinician and they are coming to me for treatment and I can’t hold hope about their ability to recover, what in the hell are we doing there? That’s tragic.
If you look at the literature–there are long term longitudinal studies, we’re talking 20 year studies of the most severely ill patients, that look at their recovery rates—the surprising thing is that most of them recover and no one talks about that. The majority of people with the most significant mental illnesses over time recover. Where recovering means living independently, in healthy relationships and working.
Joe’s Daughter: That’s the news piece. That’s the piece you want to focus on. But why is that not a message that I’m aware of. What comes up often with mental health issues is the difficulty of it, and the struggle of it, but not that its possible to get well.
Lisa: I think that’s a really complicated question and I’m not sure I have the answer to it. I have my own personal guesses, which are not scientific in any way shape or form, one of which is that I think a lot of it has to do with the stigma that surrounds mental illness. There are a lot of people who don’t want to talk about it. There’s a lot of stigma to come out and say I’ve been diagnosed with a mental health issue. So if you are a person who has had a mental health issue, and you’ve managed to recover, usually you hide it.
Joe’s Daughter: And you don’t want to touch it.
Lisa: You don’t talk about it. You don’t mention that you even had it. Because the shame associated with it and any discrimination associated with even saying that you had it, even though you are well now, shapes everyone’s perception of you in the present.
If you are a person, who has had a diagnosis, and you talk about it, like: “I was diagnosed with schizophrenia and I’ve recovered,” people then look at you through that lens. Every behavior from that point onwards, if you are having a bad day, if you are feeling moody, if you are just being a human being, you are viewed through that lens of ‘are you going to snap’? There’s a distancing, and so many, many people have learned that to get through in life, to have job opportunities, to get people who are willing to date you, be your roommate, you just don’t talk about it. And if people don’t talk about it, you don’t hear about recovery. You don’t hear their stories.
Jenny Holzer, from The Survival Series, 1983-85
Joe’s Daughter: I’ve had this experience remotely. My mother has a mental health condition and even with me, there’s this pulling away. And it’s very immediate, in the body language someone displays, and in them not knowing what the questions are, not knowing how to handle it. Which is so interesting to me, because we know how to deal with other things, how to talk about substance abuse and alcoholism, we’re much more versed in that, we are more open about these other subjects. But with mental illness there’s this shutdown that happens.
Lisa: So people who are recovered don’t talk about it. The stigma keeps everyone silent.
Joe’s Daughter: I’d like to end here then and talk about that non-silence piece. How do we talk about mental health issues when we choose to? The words that we use seem so critical to how we see it.
Lisa: Yes, the language that we use to describe something shapes the perception of our reality, so language is really important. I have a background in broad disability rights activism, and we’re really big on people-first language in the disability rights community, so the label doesn’t become the identifying characteristic of a person – so for example: you would say “a person who uses a wheelchair” rather than “a wheelchair bound person,” or “a person with a visual impairment” rather than “the blind.” So in this case, we would use terms like “a person with a mental health issue.”
I sometimes will use the word mental illness, but I say that as a code-switching tool, because you have to use the language that people are already used to and understand so that they know what we are talking about. In our society, people say “mental illness,” that’s what they understand. So if I say things like “challenges” then it doesn’t convey the same thing. If I get up in front of a group and I say, “I’ve had challenges with my wellness and recovered,” that doesn’t have the same impact than if I say: My name is Lisa, I’ve been diagnosed with bipolar disorder, but I’ve recovered from that.” That gets the message across. So in certain contexts using the language of the audience is important so that you are talking apples to apples and can address the stigma.
In terms of how we shape the messages here at PEERS, we keep our language much more focused on the person, so “a person with lived experience” is what we say, someone who has had an experience of living with mental health issues. The person isn’t a diagnosis, rather they have had mental health challenges.
Joe’s Daughter: So it tends to be in the realm of mental health issues rather than mental illness. And less of the suffering from or an idea of disorder, which I’ve seen often, even in mental health organizations.
Lisa: That’s kind of an old language. I’ve also seen lots of people doing “brain disorder”…
Joe’s Daughter: But I think that somehow they feel better in the realm of neurological illnesses, because nobody is responsible, it happened to them. That biological model is something that people are more comfortable with.
Lisa: But that theory is actually pretty old: I came from neuropsychology where it was conveyed in a very benevolent manner, that biological model makes the person not responsible for it—it’s not their fault—but the downside is that it suggests permanence and a biological difference between me and you. It helps create that separateness between them and us. I think what it really does is help preserve people’s fear. People are terrified of mental illness. So if I say a “biological brain disease” it makes them feel safer. As if it’s not going to happen to me, or my kids. But if I say “someone with mental health issues,” that could happen to me and it could happen to anyone.
Joe’s Daughter: It makes it very universal.
Lisa: Yes it does, but it can happen to anyone, and that’s the point. We need to take care of ourselves and have that as a discourse, embrace everyone no matter what’s going on with them, and help each other get well rather than creating more words that separate and divide us. That’s why we put the person first always. You are a person and you have been diagnosed with something, but we’d like to think that you are a more complex individual than that one aspect of your life, than a component of an experience of your life and we use language to convey that. And we ideally convey a sense of hope with that too – that you are someone who has had mental health challenges, but it doesn’t mean that you can’t overcome those challenges.