Fighting Mental Health Stigma Is A Lifelong Battle
David Gonzalez’s studio apartment in downtown L.A. is filled with what he calls “artifacts” – movie posters and memorabilia of old films, pop culture and news illustrating the stigma attached to mental illness. There’s a doll of Michael Myers, the “escaped lunatic” from the Halloween movies, and a copy of a 1999 front page New York
He shows off a poster from the 1976 horror movie “Schizo.” The tagline: “Schizophrenia... When the left hand doesn't know who the right hand is killing!”
Ideally his studio time capsule would show a long-gone era of the public’s view of mental illness, when people assumed that mental health clients were inherently dangerous. Yet the underlying attitude persists today, Gonzalez argues. “We’re supposed to be in this era of transformation where people supposedly don’t believe in these antiquated stereotypes, but they still do to some extent.”
The 53-year-old Gonzalez was diagnosed with bipolar disorder and severe depression more than two decades ago. Due in large part to a drug and alcohol problem combined with his illness, he spent 12 years in and out of hospitals in New York. At one point, after a suicide attempt, he was put in five-point restraints. He witnessed the results of some of the stigma that existed even within the mental health services profession at the time.
He became frustrated that he was not allowed a voice in his treatment. He wanted to set goals for himself. He most wanted to wean himself off medications, minimize his reliance on treatment and even go back to work. “They almost teach you to be dependent on them, to be dependent on the system,” he said. “A lot of providers don’t think recovery is possible.”
Gonzalez, along with a network of similarly driven people in Los Angeles, is now part of movement of mental health clients who push for more recognition of the client’s perspective in mental health services. He was a social worker and activist in New York for many years before he came to L.A. and met people like Ron Schraiber, who has been deeply ingrained in the network of mental health clients since the 1970s. Gonzalez currently writes about these issues on his website.
The movement encourages clients to participate in their own recovery by helping them set their own goals, rather than doctors dictating a program for them. It also pushes for more people with “lived experience” with mental illness to go into the system of providers. They call it the “client movement.”
These issues have been acknowledged by departments of mental health across the country. According to a 1999 U.S. Surgeon General report, “Stigma is the most formidable obstacle to progress in the arena of mental illness and health.”
A 2009 training document for the Los Angeles County Department of Mental Health acknowledged that providers need to continue to change the culture of mental health services.
“There was a shared frustration that ‘the stigma of mental health illness permeates all provider/consumer interactions,’” the document reads. “Consumers described providers as patronizing, having low expectations of consumers’ abilities, exerting minimal effort, and reinforcing learned helplessness and dependency within an unresponsive uncaring system.”
Schraiber, now the manager of client-peer relations at the L.A. County Department of Mental Health and a prominent activist for clients, notes that much has changed over the last two decades and that more people have embraced a model of care that emphasizes holistic recovery. But the work is not nearly done.
There are many compassionate, skillful and helpful providers, he said in an email. “But the prejudice and discrimination found in the general public, including so often in the media, is also reflective and manifested in the mental health field.”
Schraiber cites holistic mental health agencies such as Lamp Community in Skid Row and Mental Health America Los Angeles's Village facility as examples of positive care that adopt the movement’s ideas about self-determination. However, he says, such agencies are a small minority.
When the client movement began about three decades ago, it saw the deinstitutionalization of the mental health system as a civil rights issue. The most extreme of its ideological wings called for the abolishment of mental health departments altogether. Now departments are offering jobs to people like Schraiber.
Delphine Brody of the California Network of Mental Health Clients has witnessed what she calls the slow, frustrating transformation of the system. She calls “mental health institutions” an oxymoron. “No one gets better in there,” she says. Despite years of organizing and talking with legislators, she says, the movement has had a “marginal impact in a handful of places.”
“On the plus side, we have a voice on the inside,” she says. “But to what extent is a big question.” Many mental health clients work not only for government departments but also for national organizations such as Mental Health America and National Alliance on Mental Illness.
The client movement’s fingerprints can be seen all over California’s Mental Health Services Act of 2004, which not only provided a badly-needed windfall of taxpayer funding for mental health services but also helped move the state’s mental health system in the direction of recovery-focused care. However, the fact that much of the Mental Health Service Act funding is being cut in Gov. Jerry Brown’s budget shows how tenuous such gains can be.
On the other hand, David Gonzalez says he feels the rewards of his work whenever he believes he’s made a personal impact on someone, whether that person is a patient or a provider.
While Gonzalez lived in New York, he regularly gave presentations to sociology students at New York University, telling them about the needed paradigm shifts in mental health care. In 2009, he ran into one of those students, Maria Cristina Sandez, at the L.A. Department of Mental Health’s Hope and Recovery Conference. Sandez, who now works as a primary therapist at the Percy Village Adult Residential Facility in Boyle Heights, approached him to tell him how his talk inspired her.
“I have to say that that day, David made a difference in my understanding of recovery and mental illness,” Sandez said. “He instilled hope for recovery which is something that I carry with me in my work with clients.”
"A self-fulfilling prophecy"
Blanca Deleon is a peer advocate at a local wellness center serving mental health clients. She helps people with mental health issues find quality care, overcome stigma and lead productive lives. She also engages with providers to help them see things more from the client’s perspective. Like so many of the people working within the system in order to change it, she has a long history of mental illness.
"It was a place to isolate myself,” she says.
Deleon was taking 12 pills a day for depression and paranoid schizophrenia. But she didn't have schizophrenia. The daily cocktail of medications numbed her, further taking her out of society. "I didn't function," she says. "I didn't have a life."
When she was put in a locked facility after being hospitalized too many times, she became afraid and started seeing a social worker who discovered her misdiagnosis and introduced her to a new psychiatrist. The psychiatrist quickly changed her diagnosis to post-traumatic stress disorder and reduced her 12 daily pills to one. This was a turning point. After that, she could enjoy life and interact with people, she says.
With the help and inspiration of Schraiber and others, she became involved in the client movement, advocating for more recovery-focused care. It has been recognized that peer advocates such as Deleon have a unique ability to empathize with clients who are stigmatized in society, Schraiber said.
As few as 10 years ago, it wasn't common for mental health service providers to disclose their own diagnoses because of the negative attitudes and shame that can come with them. Deleon found only a few people like her in the system.
The biggest roadblock to change, she says, is the stigma within the mental health system. Even as mental health providers have become more accepting of recovery-based models, it is hard for some to change their mindsets. "I don't think we can sensitize them, but at least they will recognize that we are valuable and our lived experience is important," she said.
Dr. Christopher Camilleri, a psychiatrist who has worked at several nonprofit mental health agencies and frequently works with the client movement, has a history of depression, which is one of the reasons he decided to become a psychiatrist. He is one of the professionals with “lived experience” who considers himself an activist along with the likes of Gonzalez, Schraiber and Deleon. He has witnessed the slow changes in the system that has long adopted a clinical model of care. "The system's not used to people who do not have licenses and degrees working alongside them," he said.
Stigma can go both ways, however. Consumers of services sometimes demonize psychiatrists. At a recent conference, a friend was introducing him to other clients. During one introduction, she whispered into his ear, "Is it okay if I tell them you're a psychiatrist?"
Camilleri, who says he sometimes acts like a kind of chameleon in his field, can use his own experience with depression to make breakthroughs with his clients. At professional conferences, he tries to convert other psychiatrists to a more empathetic, recovery-oriented model that sometimes means not prescribing medication for certain problems.
Though he finds many people in his profession open to change, there are many who want to stick to the model of managing symptoms. That, he said, is not the way to give patients hope. "If you send that message to clients," he says, "it's a self-fulfilling prophecy."