Mental health activist Adrian Bernard says 'I don't think 'illness' is accurate. It defines us as ill or broken.'
When the voices first came to Adrian Bernard, they came in groups.
“There were the beautiful people who would sing this amazing song, the same melody over and over. Then there was a circus performer, and there were the dark ones who would come in with a token horn and blow the horn and chant dark songs. ‘Dark, dark ones’ is what I called them. There were thespians. There were children that would sing,” he says. “I was lost in that world for a while.”
Eleven years ago, those voices kept Bernard awake for five days on end, sitting up on his bed, listening to their songs and doing nothing else. He says it felt like his legs were stretched from one room of the apartment to the next.
“I sometimes want to go back there…but it’s gotten too busy now. I don’t have time,” he says.
Today, the soft-spoken Bernard works as a counselor at the Second Story House, a peer-staffed respite house for people with mental health challenges. He also works with the local chapter of the National Alliance on Mental Illness (NAMI), and is on the board at the Santa Cruz Mental Health Client Action Network (MHCAN), an entirely peer-run organization offering groups and classes ranging from cognitive behavioral therapy and help with hearing voices to yoga and sculpture.
He is also a part of the Stigma and Discrimination Reduction Initiative, a think-tank dedicated to increasing the public’s understanding of mental health issues.
“The moment I tell somebody I have mental health challenges or psychological stuff—I don’t think ‘illness’ is accurate; it defines us as ill or broken—there becomes a dead shift from openness and caring and compassion and friendship to immediate shutdown. The warmth is gone,” he says.
Many of those in the Santa Cruz community with mental health challenges say they’ve experienced the same alienation.
Sarah Leonard, the director of MHCAN, has bright red hair and an even brighter, high-pitched voice. She talks fast, and focuses intently. Over a bite to eat at a café on Soquel Avenue near her office, she blends in with the crowd of diners, save for her colorful hair. But she remembers what it was like before she did.
“In the past, people could tell that I was, you know, different,” she says. “I used to talk to myself a lot, and people would back away from me. People wouldn’t sit next to me on the bus. I also didn’t bathe for a month at a time…people were really afraid of me.”
At the time, Leonard says she heard voices in her head that tried to convince her people were out to get her, or trying to trick her. That made it even harder.
People didn’t seem to think she was aware of their reaction to her, she remembers—but she was.
“I was very much in my own world, but I was also hyper aware of everything around me. I heard every little comment,” she says. “They would say very rude things. It was hurtful. It was really hurtful. I felt like it was me against the whole world, and there was nobody else who understood.”
As our community increasingly faces challenges such as homelessness, drug abuse and violent crime, discussions about mental health are increasing as well. This is due, in large part, to media coverage—both locally and nationally—of ties between violent crime and mental illness. Countless news reports following the tragedy at Sandy Hook Elementary in Newtown, Conn., speculated that gunman Adam Lanza had Asperger’s Syndrome, despite the fact that research shows no association between Asperger’s and violence (nor that Lanza even had Asperger’s).
Here in Santa Cruz, discussions of Shannon Collins’ murder last summer centered around Charles Anthony Edwards’ schizophrenia. After the shootings of SCPD officers Loran “Butch” Baker and Elizabeth Butler, the Sentinel lamented that cop-killer Jeremy Goulet, who had no documented mental health diagnosis, “wasn’t in California’s much-heralded database that has helped authorities confiscate the guns of convicts and mentally ill people.”
Lumping both convicts and mentally ill together is exactly the kind of thing that spreads fear and stigmatization, say many in the local mental health community. Similar language can be found in a petition currently circulating, written by the group Together for a Safe Santa Cruz County, which reads, “Today, members of our community are rightly concerned about our public safety—including crime such as gun violence and theft, and social issues such as drug abuse, homelessness, and untreated mental-illness.”
“It’s very sad to me to see that the publicity in the papers tends to go towards those extreme few cases where someone hasn’t gotten help, and gets a weapon and ends up killing others, versus the thousands of others who don’t do that and don’t present any danger,” says Rama Khalsa, Santa Cruz County Interim Mental Health Director.
Says Leonard, “I’m a diagnosed schizophrenic. I am also bipolar, OCD and other things, PTSD. Anyway, the fact is that I’m a homeowner. I work two jobs. I’m not scary. I’m not violent, I’m not going to hurt anybody. Yet I’m exactly who would be treated with prejudice if someone was acting out of that kind of prejudice.”
In actuality, mental illness as a risk factor for violent crime is extremely low. “There is a slightly higher chance that a person with a severe mental illness will be more violent but it’s just like, half a percent or one percent more,” says Craig Metz, a local marriage and family therapist who formerly ran Wheelock Residential Care, a Watsonville-based mental health facility.
In those rare cases where mental illness does lead to violence, warning signs are often ignored. Though no known diagnosis of mental illness for Goulet has surfaced, his history of sex crimes prompted former U.S. Secretary of Defense Leon Panetta to lament that no one connected the dots of his troubled history. His warning at the memorial for officers Baker and Butler implored the community to be more aware of people who pose a risk for violent behavior, whether or not they have mental health issues: “At some point, somebody pays a price. These two officers on that Tuesday afternoon did not look the other way…and they paid the ultimate price.”
“Frankly, the first people that are going to see those problems are parents and relatives,” Panetta told the Weekly in a phone interview. “Sometimes we excuse that behavior, or kiss it off as just who that person happens to be, when there might very well be something that affects them mentally that requires greater care. Those bells have to go off. If we can get those bells to go off, then prevention becomes a greater key. But you’ve got to do it. You’ve got to do it at the beginning. When it comes too far, it becomes almost too late to address.”
Santa Cruz, Panetta says, has an obligation to care for those facing mental health issues.
“That’s what makes our community strong,” he says. “This is generally a community that is ahead of the game, and understanding of these kinds of problems. In some ways, that’s what makes this tragedy even worse.”
In fact, people with mental health challenges are more likely to be victims of a violent crime, or do harm to themselves, than to hurt others. Carol Williamson, the president of Santa Cruz’s NAMI, knows this first hand. She got into the mental health field because of her son Nate, who was diagnosed with bipolar disorder when he was 15 years old.
“He was this awesome wonderful guy who graduated from high school very well, went on to UC Santa Barbara, and was taking his medication, which really helped him manage his life,” Williamson recalls. “And then he went into a depression, and then a mania, and ended up having a huge psychotic break when he was 19. He couldn’t quite find the right help, and I couldn’t find the right ways to help him. My confusion about finding help for us was so frustrating. And he took his own life when he was 24.”
Like Bernard, Williamson’s son heard voices. But when he got lost in them, he didn’t come back.
“My son was so intrigued by all of that that he pretty much left this world even while he was here, constantly listening and trying to figure out what the messages were,” she says. As a mother with no experience or understanding of what her son was going through, Williamson felt lost.
“When my son had a psychotic break, I had no idea how to really handle that,” she says. She thought it would be good for him to get up and get moving, so she pressured him to get out of bed. After it was too late, she found out—from overhearing a doctor talking in a waiting room—that what he really needed was six months to a year of rest.
“If only someone had someone told me that,” she says. “How would you learn that? How would you learn that?”
One of the goals of Williamson’s organization is to teach parents how to better understand signs of emotional disturbance and mental illness in children. They offer classes for families as well as for people with diagnoses.
“When the family understands that you have an illness and it’s not your fault, they treat you more gently than if they think it’s bad behavior,” she says. “I just wanted to put my efforts into helping other families not experience the same thing I did.”
Ignorance and stigmatization of these issues has political as well as social consequences. Pam Rogers-Wyman, Chief of Acute Services at County Mental Health Department, has watched her department’s budget shrivel by 28 percent over the last six years. The economic collapse played a big part—but not the only part.
“A friend of mine who works with children with cancer said, ‘I can raise money for children with cancer every day of the week, but you cannot raise money for people with mental illnesses,’ and she’s absolutely right,” says Rogers-Wyman. “We want to find a cure for cancer. We want to find ways to prevent heart disease. We want to educate the public about obesity and diabetes. But there is not the same effort made on behalf of people with psychiatric disabilities.”
The Santa Cruz County Mental Health Department serves about 6,000 adults and children annually, most of whom are below the poverty line and have a diagnosis that qualifies as a “major mental illness.” The department gets funding directly from the state, and as a result California mandates what services the county can provide and who is eligible for the system. Because of these mandates, Rogers-Wyman says, “there are huge holes.”
“In a perfect world, everyone would be able to serve beyond their scope to make sure everyone got services,” she says. “The reason that’s not possible is because of the very significant cuts to mental health funding across the board.”
Steve DeFields-Gambrel, a pastor at the outreach-focused Circle Church on Santa Cruz’s West Side, has spent many days frustrated with the limits of our county’s mental health options—both within the county system and outside of it. He remembers a man who came into his office six months ago looking for help dealing with alcohol issues. DeFields-Gambrel spent hours making phone calls on his behalf, over three days.
“I made phone calls to Washington, D.C. and to Sacramento, as well as to every treatment program I could find locally,” he says. “Finally, someone at one of the treatment programs told me confidentially, ‘You’re not going to get this guy medically supervised detoxification in Santa Cruz County. It’s not going to happen. Take him to Monterey, to the community hospital, and dump him in their parking lot, and they might admit him for detox. But it won’t happen here.’”
DeFields-Gambrel understands that mental health workers in Santa Cruz are scrambling to help as many people as they can.
“They’re just woefully underfunded. There aren’t enough of them, there aren’t enough beds, and there aren’t enough slots in treatment programs,” he says.
Potentially, some of the people falling through the cracks will be caught in January. With the implementation of the Affordable Care Act, Rogers-Wyman expects 10,000-12,000 people in the county will be newly eligible for MediCal—the insurance required to qualify for county mental health services.
“How many of those individuals have mental health conditions that will be able to receive services?” she wonders, “I don’t know. But I’m hopeful.”
But others say the Santa Cruz community has even bigger issues to deal with.
“My sense is right now we’re questioning as a community whether we should be tolerant or not. It seems like for some people, there’s an underlying notion that people that are outside the norm are dangerous,” says Metz, the therapist.
The banner read, in giant red letters: “Mental Health facility not welcome here.”
This was two years ago, when Second Story House, one of a dozen community support services operated by the Santa Cruz Community Counseling Center (SCCCC), rented a house on Rio Del Mar in Aptos. Darcy Townsend, a counselor at Second Story, says the community “went ballistic.” There were several banners throughout the neighborhood, and on the rooftops of the houses down in the valley. Then there was a community meeting, where the residents got to voice their concerns. Townsend remembers residents saying things like:
“You people need to be watched.”
“You people need to be medicated.”
“I won’t be able to let my children play outside.”
She shakes her head as she thinks about it now at the house Second Story eventually found on Emeline Avenue. A pair of counselors bake sugar cookies in the kitchen of the four-bedroom respite house while Journey plays on the radio in the background: “Some will win, some will lose, some were born to sing the blues…”
“Because it’s a very moneyed area, they were willing to lawyer up quick,” she says. “The county caved. We were funded to run the program, not fight stigma—that was the bottom line I heard from people back then.”
After getting up and running in its current location, Second Story House has gone on to offer what many are calling the next wave of treatment for people with mental health challenges. It is called trauma-informed care, and it is the philosophy touted by the entirely peer-run MHCAN.
Based on the paradigm-changing 1996 Adverse Childhood Experiences study, trauma-informed care is a response to findings that a majority of adults with mental health diagnoses suffered abuse, neglect or other forms of trauma in their childhoods—the effects of which can linger for decades. As a result, care and treatment should be informed by a person’s traumatic experiences.
Trauma-informed care means asking, “What happened?” rather than, “What’s wrong with you?” It means that if a person had a traumatic experience of being held captive in a locked room, they are not put in solitary confinement. It means that if they were held down and abused, they should not be strapped down in a hospital.
“So people don’t get triggered, so they feel safe,” says MHCAN’s Leonard.
Primarily, trauma-informed care is about safety, she says.
“It’s about safety and choice, as defined by the person having the experience,” says Townsend, who applauds the county for writing the federal grant that eventually funded Second Story, and believes we are heading in a direction of more collaborative care.
Still, one of the main tenets of trauma-informed care is choice, and in Santa Cruz, it is county case workers who decide which treatment programs a person will be funneled into. Mental health clients can also request specific services or programs, says Rogers-Wyman, but it is unclear how much input they actually have.
Says Sylvia Beard-Blan, a county mental health client and active volunteer at the peer-run MHCAN, “It was hard for me to get what I needed without having someone advocate for me.” Rather than clients getting to create a treatment program based on what they see as their own needs, “most places want to make a program for you.”
This kind of approach can lead to distrust, says Townsend: “If you start telling me what I can and cannot do—forget it. I don’t want your help. It doesn’t look like help to me anymore, it looks like you telling me what to do.”
The challenge of improving the mental health landscape truly does affect everyone, as the people facing such issues can be just about anybody. The National Institute of Mental Health reports that about one in four Americans over 18 will have a “diagnosable mental disorder” in any given year.
“Your best friend could have a condition that you don’t even know about. Or your mom, or your sister. Half the people you work with,” says Loren Crabb, a peer group leader with NAMI who has been diagnosed with Schizoaffective Disorder. “I know a lot of people that are totally functional work-wise. They go to work. They hold down jobs for years, but yet they’re crying uncontrollably all the time. They’re in the bathroom for literally an hour washing their hands until their hands are rubbed raw and bleeding.”
Being open about our experiences and limits, and those of others, could go a long way towards creating a more compassionate community, says Interim Mental Health Director Khalsa.
“One of the things that makes it hard for people to get help is the shame factor that our culture has put on anyone raising their hand and saying, ‘You know, I think I have something going on and I’m not able to manage it,’” says Khalsa. “And I think as a culture we need to let that stuff go. And we will be much healthier for it.”
Having a number of celebrities, such as Catherine Zeta-Jones and Jean-Claude Van Damme, “come out” with bipolar disorder in recent years has helped to ease the stigma of mental health, and representations of those with mental health challenges in the entertainment industry are slowly becoming more accessible, too.
“I think our society is moving to be more accepting of individuals that are different,” says NAMI’s Williamson. “I was happy to see the movie Silver Linings Playbook [about characters with Obsessive-Compulsive Disorder and other issues]. It was really well done, and we need more of that. In all kinds of media, you see more about disabilities and about quirky people still being appreciated. But we have a long ways to go.”
Pastor DeFields-Gambrel says the people he knows who have struggled with addiction and mental health are the ones who have taught him the most in life—because they learned to accept limitations:
“I can do this; I can’t do that. I can control this; I can’t control that. Extraordinary wisdom comes from that. The wisdom of knowing what the problem really is,” he says. “They have taught me more about spirituality than I ever learned in seminary or church.”
Bernard, whose voices come, these days, as more of a unified entity, says he considers them spirits. With acceptance, he was able to transform them into a positive influence in his life, he says. His doctor now refers to them as “angels.” His friends call them “The Committee.”
“They are always working towards building a better character for me,” says Bernard. “If my thoughts get a little bit out there, they bring it back in and make sure I don’t do something unethical. They’re always that moral backbone—no yielding. I’ve got to be as good as I can. They’re a moral compass in a lot of ways. They keep me always on a path of empowerment, both for myself and the community. That’s kind of what they do.”