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Fighting Mental Health Stigma Is A Lifelong Battle

Ryan Faughnder |
July 5, 2011 | 6:33 p.m. PDT

Senior News Editor

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

David Gonzalez collects movie posters and memorabilia of old films, pop culture and news illustrating the stigma attached to mental illness.
David Gonzalez collects movie posters and memorabilia of old films, pop culture and news illustrating the stigma attached to mental illness.
Daily News headline reading “Get the Violent Crazies Off Our Streets” in all caps. 

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.

Deleon came to the U.S. 20 years ago after her father was killed in the Salvadoran Civil War. The move was traumatic. With her fear and distrust of people, life in the city was a shock. She began to have suicidal thoughts, and she was hospitalized for depression. She sometimes preferred hospitals to everyday life.

"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."

Reach Ryan Faughnder here. Follow on Twitter here.



 

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Comments

Susan (not verified) on August 15, 2011 10:30 AM

It is reaffirming to know someone else understands the stigma prevalent even in the mental health system by doctors, therapists and hosptials. Some of the most traumatic experiences of my life happened while in the "hospital" for care. I became certified as a NAMI Connections Recovery Support Group facilitator two and half years ago and find that many of the people in my groups didn't know they were suppose to have goals, dreams and aspirtations.Recently at a NAMI monthly meeting the guest speaker asked me what I did to avoid many of the same pitfalls you spoke of in your article. I explained that I set goals for myself and expected my doctor,therapist and support tteam to work with me to help me achieve them. Many people diagnosed 30 years ago with Manic-Deperession gave up and believed they were victims of their genetics or environment or perhaps just because everyone around them told them they were victims. I believe in recovery and consider myself a prosumer not a consumer. No one has the right to destroy someone's hope and dreams. Thank you for your spotlight on the grossly under reported progresses in mental health, the huge hurdles yet to traverse and for sharing this story. We need many more news outlets to focus on the successes and hope in regard to mental illness rather than those who continue to spread fear that feeds the ignorance,lack of compassion and understanding that creates stigma.

Your rating: None
D. Clark (not verified) on August 2, 2011 8:35 PM

Shereen, thought you would find this interesting.

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Tut Makal (not verified) on July 11, 2011 8:44 PM

I think that stigma might impact women differently than men for verities. Women live in Stereotyping style. Women like to learn to cope with depression rather than to get ride on depression; while men like to get ride with their depression than to learn about how to cope with depression. Suicide attempts and succession are examples of differences between men and women in term of stigmatize impacts. Women attempt suicide than men, while men achieve suicide than women.
I think women should overcome stigmatize when they quite to learn to cope with depression than to get ride on depression. For instant, women involved in drugs and alcohol because their husbands and boyfriends involved; women smoke drugs and drink alcohol to cope with their depression that caused by their addicted husbands and boyfriends rather than to kick out these addicted relations. Women should get away from addicted husbands and boys friends if they want to get ride on their depression than to learn how to cope their depression.
The suggestion about people with severe mental health concerns are not as stigmatize as they are in more developed countries is true because in developed countries, there are many activities that help mentally ill people to cope with their mental ill problem such as exercising in gym, group seasons, self-help activities, and clinical drugs to help severe mental ill comedown . But, in underdeveloped countries, health program like these are not sufficient.

Your rating: None
Tut Makal (not verified) on July 11, 2011 8:34 PM

I think that stigma might impact women differently than men for verities. Women live in Stereotyping style. Women like to learn to cope with depression rather than to get ride on depression; while men like to get ride with their depression than to learn about how to cope with depression. Suicide attempts and succession are examples of differences between men and women in term of stigmatize impacts. Women attempt suicide than men, while men achieve suicide than women.
I think women should overcome stigmatize when they quite to learn to cope with depression than to get ride on depression. For instant, women involved in drugs and alcohol because their husbands and boyfriends involved; women smoke drugs and drink alcohol to cope with their depression that caused by their addicted husbands and boyfriends rather than to kick out these addicted relations. Women should get away near addicted husbands and boys friends if they want to get ride on their depression than to learn how to cope their depression.
The suggestion about people with severe mental health concerns are not as stigmatize as they are in more developed countries is true because in developed countries, there are many activities that help mentally ill people to cope with their mental ill problem such as exercising in gym, group seasons, self-help activities, and clinical drugs to help severe mental ill comedown . But, in underdeveloped countries, health program like these are not sufficient.

Your rating: None
Tut Makal (not verified) on July 11, 2011 8:29 PM

I think that stigma might impact women differently than men for verities. Women live in Stereotyping style. Women like to learn to cope with depression rather than to get ride on depression; while men like to get ride with their depression than to learn about how to cope with depression. Suicide attempts and succession are examples of differences between men and women in term of stigmatize impacts. Women attempt suicide than men, while men achieve suicide than women.
I think women should overcome stigmatize when they quite to learn to cope with depression than to get ride on depression. For instant, women involved in drugs and alcohol because their husbands and boyfriends involved; women smoke drugs and drink alcohol to cope with their depression that caused by their addicted husbands and boyfriends rather than to kick out these addicted relations. Women should get away from addicted husbands and boys friends if they want to get ride on their depression than to learn how to cope their depression.
The suggestion about people with severe mental health concerns are not as stigmatize as they are in more developed countries is true because in developed countries, there are many activities that help mentally ill people to cope with their mental ill problem such as exercising in gym, group seasons, self-help activities, and clinical drugs to help severe mental ill comedown . But, in underdeveloped countries, health program like these are not sufficient.

Your rating: None Average: 4 (1 vote)
David Gonzalez (not verified) on July 8, 2011 5:41 PM

What most readers in California may not know is that this front-page headline (Let’s Get the Violent Crazies Off Our Streets) led to New York’s passage of “Kendra’s Law” (California’s version of Laura’s Law) which authorizes forced treatment of any individual who has received mental health services and has been deemed “a danger to self or others” whether or not this individual has a prior history of violence. Once you are labeled “mentally-ill” you are no longer “innocent until proven guilty,” you are forevermore “guilty until proven innocent.” The irony behind Kendra’s Law is that Andrew Goldstein, the individual who committed this crime, would not have been subject to this law because he had actually plead for treatment at numerous facilities and he was refused services everywhere he went. In fact, when a reporter asked him why he had committed the crime Mr. Goldstein’s reply was “Do you think I can get some help now?” It is clearly evident from Mr. Goldstein’s reply that he did not commit this heinous crime because “voices” told him to do so or because he was “psychotic” but because he was frustrated by a mental health system that turned him away everywhere he went. While these types of overt stigma that existed back in 1999 when this headline was published have been toned down and sanitized for political reasons, they are just as prevalent and misleading in this era of transformation and recovery. What mainstream media consistently fails to report is that unbiased studies have concluded that people labeled “mentally-ill” are 11 times more likely to be the victims of violent crimes vs. the perpetrators of violent crimes and what rational-minded people need to ask themselves in this era of tabloid-based journalism is: “Does the Media Report the News or Distort the News?” On Tuesday, September 11th, 2001, immediately following the attack on the World Trade Center Towers, while most of the offices around them were shutting down and fleeing the city, the Director of Community Access's Employment and Training Center (a mental health community service agency run for and by people labeled mentally-ill which is located four blocks away from "ground zero") refused to evacuate and close the center's doors, and instead, the training center became a sanctuary of refuge for hundreds of stunned survivors who were frightened, confused and disoriented. Within minutes, those very people whom the media typically portrays as violent and deranged were on the front lines offering support and providing comfort in this time of dire need. Even the NYPD and Fire Department personnel were directing debris-laden victims to the center. The cruel irony behind this story is that with all of the heroes who were being recognized and honored on a daily basis following this disaster, not one member of the media felt that this was a story worthy of mention.

Your rating: None Average: 4.7 (3 votes)
Pookah (not verified) on July 8, 2011 6:48 PM

David Gonzalez: Thanks for a thoughtful and informative comment. I didn't know any of that. I live in CA but never heard of Laura's Law. Scary.

Your rating: None Average: 4.5 (2 votes)
Kathy (not verified) on July 12, 2011 7:28 AM

This is such an important issue for people to understand. I live with depression and have been on a journey of Recovery for about two years. I also work with people shortly after they are discharged from a psychiatric unit or hospital. I am paid by their insurance company because it's proven that working with a peer specialist such as myself results in a higher rate of remaining in the community rather than returning to a hospital. (This saves money for the insurance company.)
I think the underlying reason for the social discrimination(what I used to refer to as Stigma) experienced by people living with the diagnosis of a mental illness is the ignorance of the general public. The media has not taken enough opportunities to educate the public of the truths surrounding people living with a diagnosis. They regularly update us on advances in cancer treatment, autism and other public health issues, but not on the experiences of people living with depression, or bi-polar, or on the peer run services now proven effective.

Your rating: None Average: 4 (1 vote)
David Gonzalez (not verified) on July 12, 2011 12:30 PM

Thanks Kathy. You raise an excellent point. I think it's time that insurance companies take a close look at the cost effectiveness of peer services and look for ways to integrate such services (Peer Specialists, Peer Counselors, peer support groups, etc.) into their medical plans as a way of minimizing relapse and recidivism and ultimately minimizing expenses.

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David Gonzalez (not verified) on July 9, 2011 7:22 AM

Pookah: I would venture to say that the reason why you have never heard of Laura’s Law is because violent crimes in California committed by people labeled mentally-ill rarely occur. That’s not to say that they never occur. They rarely occur! A special interest group called the Treatment Advocacy Center (TAC) has pursued similar versions of Laura’s Law and Kendra’s Law in just about every state of the nation. These so-called “public safety” laws are nothing more than knee-jerk reactions perpetuated by exaggerated and misleading stereotypes. Note the American Heritage Dictionary definition of paranoia: “extreme and irrational fear or distrust of others.” The bias evident in these types of laws is that we will never see such laws targeting law enforcement officials guilty of violent crimes, or psychiatrists guilty of violent crimes (such as Nidal Hasan) or parents guilty of violent crimes, etc. etc., because politically it would be unacceptable when it comes to these groups of people (and others).

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