Within Our Reach: Ending the Mental Health Crisis - Hardcover
In Within Our Reach: Ending the Mental Health Crisis, Rosalynn Carter and coauthors Susan K. Golant and Kathryn E. Cade render an insightful, unsparing assessment of the state of mental health. Mrs. Carter has been deeply invested in this issue since her husband's gubernatorial campaign when she saw firsthand the horrific, dehumanizing treatment of people with mental illnesses.
Using stories from her 35 years of advocacy to springboard into a discussion of the larger issues at hand, Carter crafts an intimate and powerful account of a subject previously shrouded in stigma and shadow, surveying the dimensions of an issue that has affected us all. She describes a system that continues to fail those in need, even though recent scientific breakthroughs with mental illness have potential to help most people lead more normal lives.
Within Our Reach is a seminal, searing, and ultimately optimistic look at how far we've come since Carter's days on the campaign trail and how far we have yet to go.
"synopsis" may belong to another edition of this title.
About the Author:
Excerpt. © Reprinted by permission. All rights reserved.:
Rosalynn Carter, a driving force in the field of mental health throughout her public service career, is the best-selling author of First Lady from Plains. She lives in Plains, Georgia.
Susan K. Golant has written more than 30 books and is coauthor of the award-winning Helping Someone with Mental Illness (with Rosalynn Carter). She lives in Los Angeles.
Kathryn E. Cade serves as chair of the board of trustees of the Judge Baker Children's Center in Boston. She lives in Massachusetts.
1.
STIGMA, PREJUDICE, AND DISCRIMINATION
Stigma: Our Biggest Challenge
STIGMA IS THE MOST damaging factor in the life of anyone who has a mental illness. It humiliates and embarrasses; it is painful; it generates stereotypes, fear, and rejection; it leads to terrible discrimination. Perhaps the greatest tragedy is that stigma keeps people from seeking help for fear of being labeled "mentally ill."
When I first began working in the mental health field in Georgia, there was such stigma attached to mental illness that no one wanted to be identified with the issue. No one wanted to talk about it, nor would anyone admit to having a family member with an illness. It was hard to get anyone involved, particularly anyone with influence. So when I announced that I would be working on the issue, the advocates in Atlanta descended on me--all five of them. "We need you," they said. At the same time, they warned me that it would not be easy, and they were right. It didn't take long for me to learn just how powerful stigma is. I thought the most important thing I could do back then was to talk about the issue publicly to try to bring it "out of the closet"--make it an acceptable subject of conversation. I still believe that to be the case.
In January 1977, only a few days after Jimmy took office as president, a letter arrived for me at the White House. It is just one example of the countless letters I continue to receive and that constantly remind me of the tragic effects of stigma and of the obligation I have assumed to try to do something about it. The letter was from a woman whose brother, a twenty- six-year-old former US Marine, had recently walked out of our big Central State Hospital and drowned himself in a river adjacent to the facility. She wrote:
The most neglected and unheard Americans are not the blacks, the women, or the poor, but the mentally disturbed. Why? Because no one listens. Is it because of their illness? Sure, they are ill, but would you discount everything a person with cancer said? I think not. But you justify not listening to the mentally ill by saying what they say is probably irrational. How do you know whether it is or not? Have you listened and checked out their story?
Having loved a person who was mentally ill, I shared the hell he lived in-- the same hell others have to endure to this very day. ... Society has compassion for the patient with cancer. The public is even being educated to have compassion for the alcoholic. This is fine, but when will our society be educated enough to have compassion rather than contempt for the mentally ill? It is as if these people are being punished for being sick.1
Upon rereading the letter now, I am reminded of something the late George Gerbner, PhD, who was dean of the University of Pennsylvania's Annenberg School of Communication, said at our very first conference on stigma at The Carter Center in 1985. For more than thirty years he studied television content and how it shapes perceptions in our society. He found that people with mental illnesses are depicted in an overwhelmingly negative light, which in turn perpetuates myths and misinformation that lead to the denial of full and equal rights, opportunities, and power. "That describes a human rights problem," Dr. Gerbner said, "and this is where the problem of people with mental illnesses joins one of the most critical problems of our society: ... how to progress toward a sense of fairness, dignity, and more equitable distribution of resources to all people."2
Stigma runs through every aspect of mental illness: It curtails attention from elected officials and funding for programs, it underlies the persistence of myths and misconceptions about the illnesses and the people who live with them, and it is a root cause of all the inequities that remain in relation to mental illnesses.
What Is Stigma?
Otto Wahl, PhD, a longtime advisor to my Carter Center journalism program and professor of psychology at the University of Hartford in Connecticut, defines stigma as "a mark or label imposed by others that leads to devaluation and discrimination."3 This brief definition encompasses all of the negative feelings that stigma imposes on those with illnesses, their families, and even professionals working in the field.
Otto's definition is simple and elegant, but trying to measure the impact of stigma and the many ways it harms people is much more difficult. One of the most insidious effects is that stigma gives rise to stereotypes: People experiencing mental illnesses are considered to be lacking in judgment or weak willed; they are seen as incompetent, unreliable, and unable to make decisions for themselves. It is thought that they can't work, hold public office, or even live on their own; they are dangerous, unpredictable, and violent; they have brought these problems on themselves; and they will never get better.
The truth is very different. Most people with serious mental illnesses recover and do well in the world--go to school, flourish in their jobs, own homes--yet they are considered to be rare exceptions. The stereotypic beliefs held by the general public and by many people who experience the illnesses do not reflect what modern science and other people living with mental illnesses themselves have to tell us.
Stereotypes Lead to Prejudice and Discrimination
A recent national study on stigma found that while the vast majority of Americans say they are willing to make friends with people with mental health problems, "it is equally clear that this tolerance does not extend to a willingness to accept these persons as family members or coworkers." On average, almost 70 percent of the people interviewed were unwilling to have individuals with a mental disorder marry a family member and almost 60 percent were unwilling to work closely with them.4 These findings hardly make sense given the reality that one person in four has a mental or emotional problem.5
Discrimination assumes many forms. Larry Fricks, a longtime friend who lives with bipolar disease, has been in recovery for years. In Richard M. Cohen's book Strong at theBroken Places, which documents the lives of five people coping with devastating chronic illnesses, Larry described his dehumanizing ordeal as the object of coercive treatment during a psychotic episode.6 "'They forced drugs on me. The doctors can do whatever they want, because the patient is cornered. ... I was in what they called seclusion. ... People could look at me through a small opening in the door.'" Isolated, he was kept in restraints, bound to his bed. "Being taken away in a police car, put in seclusion and restraints--these were not experiences that raised my self-esteem," Larry explained at our symposium on stigma. "The negative self-talk was so powerful, I had suicidal thoughts."
Larry also shared that he had experienced a more subtle discrimination during a meeting with a physician. "The cardiologist started talking to my wife when he discovered I was in recovery from bipolar disorder. My wife had to say to the doctor, 'Larry is right here. He can answer this question better than I can.'"
Larry continued, "What people believe about mental illness may be more disabling than the illness itself. At the core of stigma is the belief that our thought process is broken. If that's so, can you ever really trust us? Would you ever believe that I'm capable of thinking intelligently and logically about things even if I was tied down twenty years ago and psychotic?" He asked the assembled experts hypothetically, "Will you ever get over that?"
Where Does Stigma Come From?
Many of us may be puzzled about the origins of stigma and believe that we are enlightened, that we are not prejudiced against people with mental illnesses and don't discriminate. We may think it must be someone else-- someone less educated, someone less tolerant--who perpetuates the problem. Yet too often, as soon as the press sensationalizes a violent episode involving someone with a mental illness, we begin to question whether "those people" are a menace to society.
Where does stigma come from? Deep down, many of us who are not affected by a mental illness are afraid of people who are. They are, on some level, different from us, and therefore we lack compassion for them. We don't want community mental health centers opening in our neighborhoods. We look the other way or cross the street when we see a disheveled homeless person sleeping on the sidewalk or talking incoherently.
I used to believe that stigma grew from ignorance and our innate mistrust of odd behavior, and I still believe these are major factors, but I have come more and more to believe that fear often underlies our attitudes and behaviors. What do we fear most? That people with psychiatric disorders will suddenly turn violent.
When it comes to violence among people with mental illnesses, we need to turn our stereotypes on their heads. People with severe mental illnesses are much more likely to become the victims of violence--assault, rape, robbery, and murder-- than the perpetrators. The annual incidence of violent crimes against people with serious mental illnesses is more than four times higher than in the general population.7
Looking at these numbers, we have to ask ourselves, who are the victims and who are the perpetrators? Our perceptions simply have been wrong. To put this all in perspective, the overall contribution of mental disorders to the total level of violence in society is exceptionally small.8
Other studies confirm these conclusions. Mental illness alone does not predict future violent behavior; gender and age are greater predictors. It is estimated that only 2 percent of all the violent episodes in the United States can be attributed to people with a mental illness.9 So why are so many of us so afraid?
The Media and Mental Illness
Where do these distortions come from? Why is it that, despite the fact that mental health problems are so common and that each of us surely knows someone who has sought treatment, there is still such fear? Part of the answer lies in the notion of meaningful contact: the frequency and nature of interactions. While positive personal experiences can help challenge and change attitudes, the barrage of negative messages coming from the mass media constantly overwhelms the benefits of these encounters. Television, movies, newspapers, magazines, the Internet--all remain primary sources of misinformation about people with mental illnesses. They distort reality and perpetuate negative stereotypes.
In 1999, Mental Health America, a nonprofit mental health advocacy group, reported on a survey performed for the Screen Actors Guild, which found that characters with mental illnesses in prime-time television shows are depicted as the most dangerous of all demographic groups: 60 percent were involved in crimes or violence.10 Although Otto Wahl's more recent research suggests these kinds of stories are less prevalent these days, at least a third of them continue to focus on dangerousness. Also, the vast majority of the remaining shows on mental illness highlight either other negative characteristics, such as unpredictability and unsociability, or medical treatments. Otto tells us that positive stories emphasizing the recovery of people with even the most serious mental illnesses are notably absent.11 Other researchers have found that characters with mental illnesses on TV were ten times more violent than other TV characters and ten to twenty times more violent than real people with mental illnesses in the United States.12
The impact of these findings was brought home to me so powerfully one night when Jimmy and I watched an episode of Law and Order that portrayed a young man with a mental illness who kidnapped a little girl and locked her in a room in an old warehouse. She wasn't killed because she was found, but the implication of violence was there. We switched to Without a Trace, only to find a story line that revolved around a mentally ill older man who had killed two women. Two programs at the same time were depicting situations that we know are quite rare. It was very discouraging after all the efforts we and so many others have made to educate those in the entertainment business.
Though today we are beginning to see more accurate, humane, and compassionate images in movies such as As Good As It Gets (1997), A Beautiful Mind (2001), and Lars and the Real Girl (2007) and in TV series like Monk and The Sopranos, we still have a long way to go before we break free of the dangerous stereotypes associated with mental illnesses.
Print media also perpetuate stigma, reinforcing on almost a daily basis the most negative aspects of these illnesses. Otto Wahl and his team analyzed 300 newspaper articles that contained the term "mental illness." Over ten years of publications, he and his team found that coverage of stigma improved, the theme of dangerousness decreased, and articles with a negative tone became less prevalent. This seems like progress until you take into account that dangerousness remained the most common theme and that negative articles were twice as likely to be published as positive ones.13
In a recent study that analyzed seventy large US newspapers, Patrick Corrigan, PsyD, professor of psychology at the Illinois Institute of Technology, and his colleagues found that more stories were related to dangerousness than to any other theme. Even more discouraging was their finding that stories related to violent crimes and other manifestations of danger often ended up in the front sections of the newspapers, making them more visible to readers.14
At The Carter Center we have been working for more than a decade to develop a cadre of journalists who can have a significant impact on the public's understanding of mental illnesses. Our Journalism Fellowship Program encourages recipients to pursue in-depth stories and to share their knowledge with other journalists throughout their careers. Their projects have garnered numerous awards. They are bringing their expertise to media outlets ranging from the national network news to major weekly magazines, daily newspapers, radio, and even the Internet. I know that they are making important contributions in lifting some of the stigma.
The End of Stigma
Thirty years after I received the letter from the Marine's sister about his needless and tragic death, the following e-mail came to my attention. It was from Kelly Lehman, a woman in her thirties, who is struggling for dignity and fighting for recovery. She, too, attributes many of her troubles to stigma:
STIGMA, PREJUDICE, AND DISCRIMINATION
Stigma: Our Biggest Challenge
STIGMA IS THE MOST damaging factor in the life of anyone who has a mental illness. It humiliates and embarrasses; it is painful; it generates stereotypes, fear, and rejection; it leads to terrible discrimination. Perhaps the greatest tragedy is that stigma keeps people from seeking help for fear of being labeled "mentally ill."
When I first began working in the mental health field in Georgia, there was such stigma attached to mental illness that no one wanted to be identified with the issue. No one wanted to talk about it, nor would anyone admit to having a family member with an illness. It was hard to get anyone involved, particularly anyone with influence. So when I announced that I would be working on the issue, the advocates in Atlanta descended on me--all five of them. "We need you," they said. At the same time, they warned me that it would not be easy, and they were right. It didn't take long for me to learn just how powerful stigma is. I thought the most important thing I could do back then was to talk about the issue publicly to try to bring it "out of the closet"--make it an acceptable subject of conversation. I still believe that to be the case.
In January 1977, only a few days after Jimmy took office as president, a letter arrived for me at the White House. It is just one example of the countless letters I continue to receive and that constantly remind me of the tragic effects of stigma and of the obligation I have assumed to try to do something about it. The letter was from a woman whose brother, a twenty- six-year-old former US Marine, had recently walked out of our big Central State Hospital and drowned himself in a river adjacent to the facility. She wrote:
The most neglected and unheard Americans are not the blacks, the women, or the poor, but the mentally disturbed. Why? Because no one listens. Is it because of their illness? Sure, they are ill, but would you discount everything a person with cancer said? I think not. But you justify not listening to the mentally ill by saying what they say is probably irrational. How do you know whether it is or not? Have you listened and checked out their story?
Having loved a person who was mentally ill, I shared the hell he lived in-- the same hell others have to endure to this very day. ... Society has compassion for the patient with cancer. The public is even being educated to have compassion for the alcoholic. This is fine, but when will our society be educated enough to have compassion rather than contempt for the mentally ill? It is as if these people are being punished for being sick.1
Upon rereading the letter now, I am reminded of something the late George Gerbner, PhD, who was dean of the University of Pennsylvania's Annenberg School of Communication, said at our very first conference on stigma at The Carter Center in 1985. For more than thirty years he studied television content and how it shapes perceptions in our society. He found that people with mental illnesses are depicted in an overwhelmingly negative light, which in turn perpetuates myths and misinformation that lead to the denial of full and equal rights, opportunities, and power. "That describes a human rights problem," Dr. Gerbner said, "and this is where the problem of people with mental illnesses joins one of the most critical problems of our society: ... how to progress toward a sense of fairness, dignity, and more equitable distribution of resources to all people."2
Stigma runs through every aspect of mental illness: It curtails attention from elected officials and funding for programs, it underlies the persistence of myths and misconceptions about the illnesses and the people who live with them, and it is a root cause of all the inequities that remain in relation to mental illnesses.
What Is Stigma?
Otto Wahl, PhD, a longtime advisor to my Carter Center journalism program and professor of psychology at the University of Hartford in Connecticut, defines stigma as "a mark or label imposed by others that leads to devaluation and discrimination."3 This brief definition encompasses all of the negative feelings that stigma imposes on those with illnesses, their families, and even professionals working in the field.
Otto's definition is simple and elegant, but trying to measure the impact of stigma and the many ways it harms people is much more difficult. One of the most insidious effects is that stigma gives rise to stereotypes: People experiencing mental illnesses are considered to be lacking in judgment or weak willed; they are seen as incompetent, unreliable, and unable to make decisions for themselves. It is thought that they can't work, hold public office, or even live on their own; they are dangerous, unpredictable, and violent; they have brought these problems on themselves; and they will never get better.
The truth is very different. Most people with serious mental illnesses recover and do well in the world--go to school, flourish in their jobs, own homes--yet they are considered to be rare exceptions. The stereotypic beliefs held by the general public and by many people who experience the illnesses do not reflect what modern science and other people living with mental illnesses themselves have to tell us.
Stereotypes Lead to Prejudice and Discrimination
A recent national study on stigma found that while the vast majority of Americans say they are willing to make friends with people with mental health problems, "it is equally clear that this tolerance does not extend to a willingness to accept these persons as family members or coworkers." On average, almost 70 percent of the people interviewed were unwilling to have individuals with a mental disorder marry a family member and almost 60 percent were unwilling to work closely with them.4 These findings hardly make sense given the reality that one person in four has a mental or emotional problem.5
Discrimination assumes many forms. Larry Fricks, a longtime friend who lives with bipolar disease, has been in recovery for years. In Richard M. Cohen's book Strong at theBroken Places, which documents the lives of five people coping with devastating chronic illnesses, Larry described his dehumanizing ordeal as the object of coercive treatment during a psychotic episode.6 "'They forced drugs on me. The doctors can do whatever they want, because the patient is cornered. ... I was in what they called seclusion. ... People could look at me through a small opening in the door.'" Isolated, he was kept in restraints, bound to his bed. "Being taken away in a police car, put in seclusion and restraints--these were not experiences that raised my self-esteem," Larry explained at our symposium on stigma. "The negative self-talk was so powerful, I had suicidal thoughts."
Larry also shared that he had experienced a more subtle discrimination during a meeting with a physician. "The cardiologist started talking to my wife when he discovered I was in recovery from bipolar disorder. My wife had to say to the doctor, 'Larry is right here. He can answer this question better than I can.'"
Larry continued, "What people believe about mental illness may be more disabling than the illness itself. At the core of stigma is the belief that our thought process is broken. If that's so, can you ever really trust us? Would you ever believe that I'm capable of thinking intelligently and logically about things even if I was tied down twenty years ago and psychotic?" He asked the assembled experts hypothetically, "Will you ever get over that?"
Where Does Stigma Come From?
Many of us may be puzzled about the origins of stigma and believe that we are enlightened, that we are not prejudiced against people with mental illnesses and don't discriminate. We may think it must be someone else-- someone less educated, someone less tolerant--who perpetuates the problem. Yet too often, as soon as the press sensationalizes a violent episode involving someone with a mental illness, we begin to question whether "those people" are a menace to society.
Where does stigma come from? Deep down, many of us who are not affected by a mental illness are afraid of people who are. They are, on some level, different from us, and therefore we lack compassion for them. We don't want community mental health centers opening in our neighborhoods. We look the other way or cross the street when we see a disheveled homeless person sleeping on the sidewalk or talking incoherently.
I used to believe that stigma grew from ignorance and our innate mistrust of odd behavior, and I still believe these are major factors, but I have come more and more to believe that fear often underlies our attitudes and behaviors. What do we fear most? That people with psychiatric disorders will suddenly turn violent.
When it comes to violence among people with mental illnesses, we need to turn our stereotypes on their heads. People with severe mental illnesses are much more likely to become the victims of violence--assault, rape, robbery, and murder-- than the perpetrators. The annual incidence of violent crimes against people with serious mental illnesses is more than four times higher than in the general population.7
Looking at these numbers, we have to ask ourselves, who are the victims and who are the perpetrators? Our perceptions simply have been wrong. To put this all in perspective, the overall contribution of mental disorders to the total level of violence in society is exceptionally small.8
Other studies confirm these conclusions. Mental illness alone does not predict future violent behavior; gender and age are greater predictors. It is estimated that only 2 percent of all the violent episodes in the United States can be attributed to people with a mental illness.9 So why are so many of us so afraid?
The Media and Mental Illness
Where do these distortions come from? Why is it that, despite the fact that mental health problems are so common and that each of us surely knows someone who has sought treatment, there is still such fear? Part of the answer lies in the notion of meaningful contact: the frequency and nature of interactions. While positive personal experiences can help challenge and change attitudes, the barrage of negative messages coming from the mass media constantly overwhelms the benefits of these encounters. Television, movies, newspapers, magazines, the Internet--all remain primary sources of misinformation about people with mental illnesses. They distort reality and perpetuate negative stereotypes.
In 1999, Mental Health America, a nonprofit mental health advocacy group, reported on a survey performed for the Screen Actors Guild, which found that characters with mental illnesses in prime-time television shows are depicted as the most dangerous of all demographic groups: 60 percent were involved in crimes or violence.10 Although Otto Wahl's more recent research suggests these kinds of stories are less prevalent these days, at least a third of them continue to focus on dangerousness. Also, the vast majority of the remaining shows on mental illness highlight either other negative characteristics, such as unpredictability and unsociability, or medical treatments. Otto tells us that positive stories emphasizing the recovery of people with even the most serious mental illnesses are notably absent.11 Other researchers have found that characters with mental illnesses on TV were ten times more violent than other TV characters and ten to twenty times more violent than real people with mental illnesses in the United States.12
The impact of these findings was brought home to me so powerfully one night when Jimmy and I watched an episode of Law and Order that portrayed a young man with a mental illness who kidnapped a little girl and locked her in a room in an old warehouse. She wasn't killed because she was found, but the implication of violence was there. We switched to Without a Trace, only to find a story line that revolved around a mentally ill older man who had killed two women. Two programs at the same time were depicting situations that we know are quite rare. It was very discouraging after all the efforts we and so many others have made to educate those in the entertainment business.
Though today we are beginning to see more accurate, humane, and compassionate images in movies such as As Good As It Gets (1997), A Beautiful Mind (2001), and Lars and the Real Girl (2007) and in TV series like Monk and The Sopranos, we still have a long way to go before we break free of the dangerous stereotypes associated with mental illnesses.
Print media also perpetuate stigma, reinforcing on almost a daily basis the most negative aspects of these illnesses. Otto Wahl and his team analyzed 300 newspaper articles that contained the term "mental illness." Over ten years of publications, he and his team found that coverage of stigma improved, the theme of dangerousness decreased, and articles with a negative tone became less prevalent. This seems like progress until you take into account that dangerousness remained the most common theme and that negative articles were twice as likely to be published as positive ones.13
In a recent study that analyzed seventy large US newspapers, Patrick Corrigan, PsyD, professor of psychology at the Illinois Institute of Technology, and his colleagues found that more stories were related to dangerousness than to any other theme. Even more discouraging was their finding that stories related to violent crimes and other manifestations of danger often ended up in the front sections of the newspapers, making them more visible to readers.14
At The Carter Center we have been working for more than a decade to develop a cadre of journalists who can have a significant impact on the public's understanding of mental illnesses. Our Journalism Fellowship Program encourages recipients to pursue in-depth stories and to share their knowledge with other journalists throughout their careers. Their projects have garnered numerous awards. They are bringing their expertise to media outlets ranging from the national network news to major weekly magazines, daily newspapers, radio, and even the Internet. I know that they are making important contributions in lifting some of the stigma.
The End of Stigma
Thirty years after I received the letter from the Marine's sister about his needless and tragic death, the following e-mail came to my attention. It was from Kelly Lehman, a woman in her thirties, who is struggling for dignity and fighting for recovery. She, too, attributes many of her troubles to stigma:
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