TOM PUTNAM: Good afternoon. I’m Tom Putnam, Director of the John F. Kennedy Presidential Library and Museum. On behalf of David McKean, CEO of the Kennedy Library Foundation, and all of my Library and Foundation colleagues, I thank you for coming, and acknowledge the generous underwriters of the Kennedy Library Forums, including lead sponsor Bank of America, Boston Capital, the Lowell Institute, The Boston Foundation, and our media partners, The Boston Globe, WBUR and NECN.
Programs like this one would not be possible without your support. We thank those of you who are members and ask those who are not to consider taking out a membership by visiting the Library’s website.
Earlier this year, I was afforded the extraordinary opportunity, along with my fellow Library Directors and the Archivist of the United States, to take a tour of the newly renovated Museum at the Jimmy Carter Library with President and Mrs. Carter as our guides. Not surprisingly, given President Carter’s training as an engineer and his and his wife’s well-deserved reputation as enterprising global activists, the new Museum includes the most creative, state-of-the-art, and engaging exhibits within the Presidential Library system.
Despite the fascinating interactives on the presidency and post-presidential years, I was most struck during my visit by the selfless dedication of President and Mrs. Carter, informed by their childhoods and courtship in rural Georgia. As Mrs. Carter writes in her autobiography, on the morning of her husband’s inaugural she knew that the man who took the oath of office that afternoon was the very same person who, the day before, had helped her mop up water in the garage of their home in Georgia after a water pipe burst from the cold. “Though we faced extraordinary responsibilities and lived a life we could have never, ever dreamed of,” she writes, “we are first and always Rosalynn and Jimmy Carter from Plains, Georgia.”
We all recall the honesty and transparency the Carters brought to our nation’s Capital at a pivotal moment in our country’s history, symbolized by their decision to walk down Pennsylvania Avenue, preceded only by Thomas Jefferson, who also traveled from the Capitol to the White House on his own two feet. While those may have been Mrs. Carter’s first steps as First Lady, they were familiar to her in a tireless march for the causes she believes in, especially in her efforts to improve the lives of those living with mental illnesses.
The genesis of this interest, she describes in her new book, stemmed in part from an encounter during her husband’s campaign for Governor. Shaking hands with workers at a cotton mill, she met a very tired looking woman at four-thirty in the morning, who had just clocked out from the night shift. When Mrs. Carter encouraged her to get some rest, the woman explained she was headed home to take care of her daughter who was mentally ill, while her husband headed off to work himself. Mrs. Carter campaigned the rest of the day and then stood in line at one of her husband’s late night rallies, taking her turn with others, waiting to shake her husband’s hand. “What are you doing here?” Mr. Carter asked when he came to her in the line. “I came to see what you are going to do to help people with mental illnesses when you become Governor,” she replied. [laughter] As he made his way to the next person in line, he answered, “We are going to have the best program in the country, and I’m going to put you in charge of it.” And that he did.
Mrs. Carter served as a member of the Governor’s Commission to Improve Services to the Mentally and Emotionally Handicapped and later as the honorary Chair of the President’s Commission on Mental Health, which led to the passage of the Mental Health Systems Act in 1979. Never one to back down from a fight, she testified before the Senate on behalf of the Mental Health Systems Act, despite the fact she was counseled not to do so as the committee was chaired by Senator Edward M. Kennedy, soon to be her husband’s rival for the Democratic nomination, but who was an ally with her on the fight for the rights of the mentally ill as a moral issue facing our country.
In her testimony that day she stated, “The mental health problems facing our country are the problems of all citizens. The people with these problems are ourselves, our families, our neighbors and our friends.” She continues this crusade today through her work at the Carter Center where she created and chairs the Center’s Mental Health Task Force. And I should note she counts Senator Kennedy’s son, Congressman Patrick Kennedy, as a friend and collaborator in this cause.
Her newest book, Within Our Reach: Ending the Mental Health Crisis, is on sale in our bookstore, and Mrs. Carter will sign copies at the conclusion of this program. Mrs. Carter will open the Forum with a few words and then have a conversation with our moderator, Dr. Peter Kramer, described by the New York Times as “possibly the best known psychiatrist in America.”
A professor of clinical psychology and human behavior at Brown University, Dr. Kramer is the author of numerous books, including the best sellers Listening to Prozac and Against Depression. Joyce Carole Oates describes him as an “analyst of exceptional sensitivity and insight,” writing, “to read his prose on virtually any subject is to be provoked, enthralled and illuminated.” We could have no better moderator for this afternoon’s session, and we thank you, Dr. Kramer, for being here with us today.
During my trip to Atlanta, I admit to beginning to feel tired after the two-hour tour of the Carter Museum and the Carter Center and amazed by President and Mrs. Carter’s seemingly boundless energy. When we next sat down around a conference table to hear them describe their recent trip to Sudan, where they have led the effort to eradicate Guinea worm disease and where the Carter Center monitored the recent Democratic elections, I felt humbled to be in their presence and in awe of their tireless perseverance, abiding faith, and indefatigable efforts to alleviate suffering and create a more peaceful world.
Mrs. Carter, you honor us here with your presence, as you did at this Library’s Dedication and Opening 31 years ago. You and President Carter exemplify the very best of our nation.
Paraphrasing President Kennedy, the energy, the faith, the devotion which you bring to these endeavors has lit our country and all who serve it, and the glow from that fire truly lights the world.
Ladies and gentlemen, please join me in welcoming First Lady Rosalynn Carter. [applause]
ROSALYNN CARTER: Thank you. Thank you. Well, it’s good to be here and to see so many people in the audience interested in mental health. That always makes me feel good so thank you for coming. I have worked on mental health for a very long time. I’ve worked with Senator Kennedy, as you said, and I’ve worked with Patrick. Patrick was at the Carter Center Thursday. We had a program on National Guard and Reserves, the problems of these troops coming home, suffering from PTSD, and traumatic brain injury. He opened our session and gave a really, really wonderful speech. Then, I had to follow him, which was a little difficult, but he makes such good speeches.
Once, when we had a mental health meeting, something had happened. I don’t know whether it was apparent to him, and not past, because we had worked on parenting so long. Anyway, we had a lot of people together to see what we’re going to do next. Patrick got up and made a speech, and I agreed with everything he said. It was so good. Every time he makes a speech, I get to where I want to do more and more and more. So I went up to him and I said, “Patrick, I think you ought to run for President.” Well, he hasn’t forgotten it because he tells the story every time I hear him. I just think the same way he does about issues and such.
Well, I’ve been looking forward to coming here. I have been working on mental health for a very long time. In fact, Jimmy was inaugurated Governor in 1971 in January. In January 2011, I will have been working in mental health issues for 40 years. That is a very long time. [applause]
I did become involved in campaigning for Jimmy the first time he ran for Governor. He ran once and lost. He was actually in the State Senate running for Congress, and our leading Democratic candidate had a heart attack and left Lester Maddox-- are you familiar with Lester Maddox, our only Democratic candidate? Jimmy went to Atlanta because nobody had announced to run against Lester Maddox. We had a Republican candidate, first time in 100 years, running for Governor. So Jimmy went to Atlanta to see who was going to run and nobody was. Lester Maddox was very popular, you remember, this was in the late 1960s.
I was going home from our peanut warehouse. I was keeping our business while Jimmy was gone. His mother lived about halfway between the office and my house, and she called me, and Jimmy was on the phone. So I went in and he said, “Are you sitting down?” I said “No.” He said, “Well, you better get a chair.” Then, he told me he was going to run for Governor. Well, it was all very sudden. We only had, I think, maybe seven or eight weeks to campaign. But you couldn’t just let him have it, no, it was big segregationists. So the first time I had campaigned, he was in the Senate but I had done telephone calls and things. But I’d never done any campaigning.
Everywhere I went people asked me what my husband would do with someone with mental illness. I kept getting the question, and it was a time when the community mental health centers acted in the past. People were being moved out of the huge institutions, but the community mental health centers had not been established yet. So they were going from the institutions just into the communities with no services. I did meet that woman. But it was after I had just heard it day in and day out, and I became really distressed about it.
Jimmy did appoint the Governor’s Commission to Improve Services to the Mentally and Emotionally Handicapped. I would take the “the” out of that if we did it again -- but this was 1971 -- to the Mentally and Emotionally Handicapped. You don’t say “the mentally ill” anymore. You said, “The person with mental illness.” So every time I look at that, I think how wrong we were and how little I knew back then about mental health.
I was a member of the Commission. He didn’t put me in charge of it, although he said he was going to, because I didn’t know anything about the issue. But he did set up the Commission and my job was to tour the facilities in the state and come back, not in a critical way, but just to go and see what was happening, and come back and report to the Commission, which I did. Then, I got more and more concerned about what was happening after seeing the institutions.
What we did when Jimmy was President, we set up 123 community mental health centers. Now, these were by no means comprehensive. Some were just an office in the middle of a small town. In larger cities we did other things. But many times, just an office with a telephone, so that somebody could go by and find out where to go for help. At the same time, we were trying to get homes for mentally ill.
I remember going to one town in Georgia, I was going to talk to the City Council about a place that we wanted to establish -- a home for some young people. I got off the airplane at the airport and they told me that the City Council voted the night before not to do it. So it was really interesting situations back then. Nobody would talk about mental illnesses. Nobody wanted to be involved with it. I would call meetings, and the people who would come … But I didn’t tell you about my five advocates. When I said I was going to work on mental health issues, all the advocates in Atlanta descended on me, all five of them. [laughter] And that was it. Nobody would talk about the issue. But they would come to my meetings and maybe a few employees, a few government workers, because Jimmy was Governor. It took us forever to try to get a group together that would work on the issue. It was an interesting experience, to say the least.
But then we were in the White House, Jimmy appointed the President’s Commission for Mental Health and we actually worked hard and developed legislation that was passed and funded. That was in October of 1980. In November, 1980, as Jimmy says, he was involuntarily retired from the White House, and my mental health legislation was gone. The next President abandoned it. It wasn’t perfect, but it could have made a considerable difference. It was one of the biggest disappointments of my life.
Even more distressing is the fact that 25 years later, a second Presidential Commission concluded, in 2002, that the mental health system in the United States is in a shambles. That’s where we are now. Then, when we looked at the recommendations of the second Commission, it was shocking to see how many of them were the same ones that we had in our Commission in 1978, filling the gaps in care for children and for elderly citizens, correcting the shortage of trained mental health professionals.
Just think what it would have been if we had incentives for mental health for young people to go into mental health as a profession, to choose mental health. We are so lacking in mental health professionals, especially those serving minority populations and providing adequate support services for those suffering from serious mental illnesses.
We have a program for those with serious mental illnesses in the legislation, but very little has been done in this whole length of time. Except that, when George Bush was President, he increased research considerably. Jimmy had increased research, and then George Bush increased research. And from that research is what we know today, and that’s one thing that has developed the research that we know, and the knowledge of the brain that we know now.
Since I first began working in this field, I’ve met hundreds, even thousands of citizens, young and old, rich and poor, people from all walks of life, who have shared with me their personal stories of pain, suffering, and even loss of a loved one because help was not available. What is so sad is that we know what to do. We know what to do. We’ve learned so much about the brain and the power of individuals to recover, even from serious mental illnesses. We have excellent knowledge about effective treatments and good models for delivering them. We have early intervention strategies to prevent more serious problems later in life. We’re even beginning to understand how to promote resiliency in children at risk and those struggling with the most serious disorders.
When many people ask my why I decided to write my book, and actually I did write one in the late 1990s and I have a very good task force, mental health task force, at the Carter Center. They wanted me to update it. I started looking, but I felt kind of an obligation to do it anyway. But then, when I looked at it, it was so out of date, everything has changed, that I decided I had to write another -- start on another book.
I want people to know that mental illnesses can be diagnosed, can be treated. The overwhelming majority of people can live full and productive lives in the community. People don’t know that. That’s one reason I wrote the book. But I want everybody to know what I know, so we can get over the stigma and go on to do what is good and right for people with mental illnesses. [applause]
Thank you. The themes of my book are recovery. It’s possible for people to recover from mental illnesses and that is something we never dreamed of when I began working. In fact, in 1978, when we were working on the President’s Commission on Mental Health, we didn’t even mention recovery. It was not something, even then, that we ever thought was possible. But hope plays an important part and the social movements like the peer support program with people with mental illness talking with others and helping them. It’s been so wonderful to see what happens because they treat them -- the consumers, those living with mental illness -- treat the others with respect. One member of my task force, who is a consumer living with a mental illness, said that if respect is not there, then it’s nothing. Everything is respect. Now he’s in Georgia. He is a consultant, and he teaches people -- doctors and people in the mental health field -- to work with people who have mental illnesses and teaches them how to show respect. He’s in all the hospitals in Georgia, now, doing that.
Recovery is one prevalence. Mental illness affects all of us. They touch every family in our country. One in four Americans is diagnosed with mental illness every year, one in four. This is one reason why I cannot understand why stigma is still so bad because everybody knows somebody, if not a family member, a close friend, living with a mental illness. Stigma is the third thing. Stigma is the greatest barrier to seeking care for individuals who have mental illness, the greatest barrier for a person with a mental illness. And it’s the greatest barrier for those of us in the field who are trying to do something about it.
Prevention, early intervention and prevention have the potential to reduce the risk and severity of mental illness, especially among children. We have learned that mental illnesses are developmental illnesses. The sooner they can be diagnosed, then the better it is. Because sometimes, it will always mitigate the consequences, but sometimes it can even prevent another episode later in life.
It is so important to watch babies. I want mothers to know to watch their babies. Watch to see how they bond with their parents, whether or not they meet the age-appropriate milestones like when they crawl, when they walk, and so forth, and how they react with peers, with their classmates, even in very little, very young ages. It is so important if there is any deviation, parents must take their babies to see a doctor or mental health professional. Some day I’m dreaming of the time when people will be taking their babies to a mental health professional for a checkup, just like you take the baby to a medical doctor for a checkup. I hope, I hope, I hope that day will come.
Well, I hope my book will help dispel the myths and misconceptions about mental illnesses that cause so many people to keep their problems hidden and hinder all our efforts to help them.
Ultimately, the way we treat people living with mental illnesses is a moral issue. To neglect those who, through no fault of their own, are in need, runs counter to our values, our decency and equality. Today, with our knowledge and expertise, we have a great opportunity to change things forever, for all people with mental illnesses, with what we know now, to move forward to a new era of understanding, care and respect. Thank you very much. [applause]
DR. PETER KRAMER: Well, what an honor it is to chat with you. Tom Putnam said it is humbling to be up here with you and it is, and I think not just because of the aura of the mantle of the Presidency. We were backstage, and you were talking about your schedule and I thought one could be in awe, merely of the energy and focus. You're involved with so many important issues.
I want to go back to the beginning, because I think the mental health field and the mentally ill have been very lucky that you have chosen this issue as your central one. And to ask, again, how is it that that happened? Because I think people must have come up to you with questions about women’s rights and civil rights and care for the elderly, all issues which you since have gotten involved with. What was it, not just in these voters and constituents, but in you that allowed you to choose this issue, which was not mainstream at the time?
ROSALYNN CARTER: Well, Jimmy lost the first election, and Lester Maddox was elected and four years later he won. In that length of time, I looked at the issue. We had been to Central State. Jimmy had a cousin in Central State Hospital. That was a big institution. We didn’t see anything except the few people they had chosen coming in for a little tea. This was before he was elected Governor, after he had won, so he did see the bad situation.
And then also, I had already decided that maybe that was what I’d work on. After he was elected Governor, before the inauguration, we went to North Carolina to a conference for the Governors and the incoming Governors with the Governors, ones that were already Governors. I had sessions with the incoming Governors’ wives and some of the …I don’t think there was anybody there from other Governors except the wife of the Governor of North Carolina. She told us that everybody with a cause was going to come to us and ask us to work on their cause, and the best thing to do was choose one issue. Then, you could just have an excuse and say, “I’m working on mental health.” And so, that helped me decide. And you were right. Every issue came along. But by then, I was so engrossed in mental health and working with that issue.
DR. PETER KRAMER: And you actually went and did something like clinical work. You worked with many …
ROSALYNN CARTER: When Jimmy was Governor, I went to Central State several times. It was awful. There had been 12,000 people there, with room for 3,000. They were packed into rooms. People were sitting in chairs and they weren't strapped, but there were, like, diapers tied around them and rocking like this. Now, this is how much I knew about mental illness at that time. We would get a mirror. We would try to make them smile. We would hold the mirror up to them and say, “Smile.” Every once in a while, somebody would smile, but most of them didn’t. They were just sedated, and it was so bad.
But then one Air Force base or Army base, some base in Georgia that was not being used anymore, was made into a mental health center -- moving people out of the hospital. I visited some of those and it was so interesting, because here were people who had been in institution. People back then just put their loved ones away. There are 30,000 grades at Central State of people who were not claimed, that were put there, and just stayed there for the rest of their life until they died. The cemetery was just found not very long ago. They’ve cleaned it up and put a plaque there.
But they would move them out and I would visit these facilities. You would see these people, they let them choose their clothes, which they never had made a choice, forever, of anything. They let them go through cafeteria line and choose what they wanted to eat. It was a new experience. It was so wonderful to see what happened to them. I remember watching two sitting on the steps, steps that went down off of a porch. I was standing behind them and one of them had a cigarette, and the other one wanted a puff. He kept trying to reach over. You know, there were no social connections. He was trying to reach over, and finally touched him enough to ask him for a cigarette. Probably the first time this man had …I mean, it was just so wonderful to watch and to see what could happen when people have a chance. But this was not much of a chance, but it was a total difference.
The more I learned about the issue and the treatment people got, I always said they got what was left over after everything else was funded, everything else in health, which was nothing almost. It was tragic.
DR. PETER KRAMER: And that is the complaint of the field, that it always gets the scraps. It always comes last.
ROSALYNN CARTER: It still does.
DR. PETER KRAMER: I was going to ask a question, which almost has been answered, that you seemed, at first, to have an affinity for the families of people with mental illness. But it’s lucky, in a way, that you also had an immediate and easy feeling for people with mental illness. I wonder why that is, because that’s certainly not universal, that people can enter a state mental hospital and see people there.
ROSALYNN CARTER: I don’t know why. I don’t know. But I did. I just felt like they needed help and that nobody was helping them, and nobody wanted to be involved with helping them.
When I was growing up, we had two people at home with mental illnesses. Of course, we knew nothing about the brain back then, very few treatment methods, mostly just out of sight and sedated.
One was Jimmy’s cousin, who would come home and he would walk up and down the street. We have one street in Plains a block long with stores. He would walk up. Sometimes, I would be walking down the street, he’d come up and frighten me. He would get to where he was wringing his hands, and getting louder and louder. Then, he’d go back to Central State. They would come in a police car and take him away. Because back then, you could put them away anytime you wanted to. In fact, there was a woman in Plains who had her husband put in Central State and nobody ever knew whether he had a mental illness or not. But I don’t know.
The other one, her father locked the door at night because he was afraid of her. You know, I heard stories like that. So I don’t know why I felt so strongly that I needed to do something about it. Then, when Jimmy was Governor, I volunteered at our local hospital, one of the hospitals in Georgia, instead of doing community centers, they had already built this one hospital. They built, I think, four more in the state, four or five more in the state. I used to go and volunteer out there. You know, to see people out planting flowers in the garden and knowing they had a mental illness, knowing that … Back then, I didn’t think it’d ever be a fulfilling life.
DR. PETER KRAMER: What do you make to be the difference? Because I think it’s true, whatever the limitations of our abilities now, that there are extraordinarily more opportunities for the mentally ill now than there were then. What are the changes that you see in the way we treat patients?
ROSALYNN CARTER: I think we’ve learned so much more about the illnesses and that they are biological like the other illnesses. I just think it made all the difference, the research, in what we know. There’s one other thing, though, that made me want to stick with mental illness and that was that I got to know Margaret Mead. She came to see me when she heard I was going to work for mental health issues. She said, if we’d become interested and take the most vulnerable among us as our -- something we want to help; I don’t remember exactly how she said it -- then we humanize our culture.
And you can see that when you work with people. Like when I did, when people were just sedated and knew nothing and now we realize they are human beings with hopes and dreams and thoughts just like everybody else. They want to have good lives, and we still don’t treat them that way.
DR. PETER KRAMER: I want to hear about the encounter with Margaret Mead. I’m remembering, as you say this vaguely, reading in your memoir that you were a bit despairing, maybe a bit anxious at some moment. And she came in, this was maybe 1971?
ROSALYNN CARTER: -- Mm-hmm, when Jimmy was Governor.
DR. PETER KRAMER: And I wondered more about what the encounter was and also what she said. Because I think probably what she believed about mental illness is somewhat different than what we believe today.
ROSALYNN CARTER: It’s in my book. [laughter] But she came to see me and she said, “It’s going to be hard,” which is true. Then, she came back to see me when Jimmy was elected President and we went to Vancouver, I think. Anyway, it was just a great experience to be with her. She talked about the most vulnerable among us. If we take our first consideration the most vulnerable among us. Go ahead. You can go ahead and talk.
DR. PETER KRAMER: Well, I may want to jump to another issue, as well, which is it’s hard not to ask you political questions when we’re up here. But you write in your book about issues that contribute to the crisis in mental health that are effectively political issues. We send young men off to war quite regularly. They come back. Nowadays they're less likely to be killed, more likely to come back in terrible shape, physically and mentally. We incarcerate people more than most other cultures. We use solitary confinement more than the advanced cultures in Europe relative to incarceration rates that they have. I wonder, are you optimistic or pessimistic about this change? And what’s your view about the politics that impact on mental illness?
ROSALYNN CARTER: Well, we just had a session on National Guard and I said that in my remarks. That’s going to be with us for a long, long time, with people coming back with PTSD and TBI. I don’t quite understand your question.
DR. PETER KRAMER: Well, I’ve complicated it too much. You are going around the world, looking at enormous issues of peace and war, as well as looking at mental illness. I just wondered what the outlook is. We’ve just been through an election which is discouraging for liberals and Democrats and I'm wondering what you see on the horizon, in that way.
ROSALYNN CARTER: About mental illness?
DR. PETER KRAMER: Well, I think issues like Afghanistan.
ROSALYNN CARTER: I don’t see the things I would like to see on the horizon, particularly after this election.
DR. PETER KRAMER: What about incarceration? You write a great deal about prisoners. What sorts of reforms do you want to see here?
ROSALYNN CARTER: The prisons and jails are the largest mental institutions in the country. It is tragic to me when somebody who is homeless on the street, living with mental illness, gets hungry, goes into a restaurant, has a sandwich or a cup of coffee, gets up without paying, and they're taken off to jail. That is tragic. But there are some good jail diversion programs now. In my state, we have mental health courts and I think there are other states too. But I’m familiar with those at home and the one close to my home, 35 miles away, has a nurse, somebody at the prison that can, when anybody comes in, determine whether they have a mental illness or not, and sends them to mental health court. I’ve visited the mental health court, and it is incredible to see what happens. The court will be responsible for them for a year, and they have social workers that look after them, to be sure they're getting along all right. Then, they come in every once in a while to see him, to see the judge.
The first day I went, the courtroom was kind of small. It wasn’t like a huge, big courtroom, scary a little bit to me. The first person that came in, he said, “Mrs. Carter, I’m not going to be very formal. It’s not my style to be too informal, but I’m not going to be really formal.” Well, this first young woman came walking in and he said, “Oh my. You look so good today. How are you getting along?” And, I mean, it was totally different from the way we look at people with mental illness and the way they're treated naturally. She was this wonderful person who had mental illness. She had gotten her children back and had been taking care of her mother, who was sick, had gotten a job, and just living a good life. She would have been in prison. Look what would have happened to her. She would be worse. To go to prison is worse for people with mental illness.
DR. PETER KRAMER: They are terrible places. As I said, I think there are some political issues around the question of how much incarceration there is. I want to ask about stigma, which is one of the themes in your book. You quote a study, which I thought was interesting, that says - if I'm getting it right -- that people today say they're willing to make friends with people with mental illness. They may actually have friends who have mental illness. But they're less likely to accept them as family members or want them as family members.
And I wonder what you think is going on. I’m going to say something I think I see on campus, because I practice near a college campus, near Brown, where I think we may have traded moral stigma where, in the past, people were blamed for being lazy or not trying enough or not having willpower, for biological stigma, so that you might not want your child to marry someone with mental illness out of a fear having to do with genetics. I wonder whether the nature of stigma changes as we define diseases as less moral, or even less psychological, and more medical.
ROSALYNN CARTER: Probably.
DR. PETER KRAMER: What do you see? Let’s make it a broader question, which is where do you see stigma getting in the way of change?
ROSALYNN CARTER: Are you familiar with the new report done by Columbia University and Indiana University?
DR. PETER KRAMER: No.
ROSALYNN CARTER: Because we’ve been working with Columbia. Columbia University liked my Mental Health Fellowship Program so we’ve been doing a lot of work with them. This study, the conclusions were written up, and I got one. It was dated September 15th. It says that 85% of people now recognize mental illness as neurological illnesses. It has had nothing to do with stigma and discrimination. It says that stigma, in some cases, the knowledge of the brain and the talk about that, must fight in people. The mental health community -- what we always have been trying to do -- is say it’s a disease like any other disease and that that is backfiring.
Evidently, sometimes it’s even making stigma worse.
DR. PETER KRAMER: I hadn’t known the name of the report, but I had read that conclusion. That was very much along the lines that I was thinking. It turns out to be very hard to make people comfortable with mental illness, and the frame isn't the whole story.
ROSALYNN CARTER: I think the main thing is the fear factor. What people don’t know is that people with mental illness are much more likely to be victims of crime than they are to be perpetrators of crime, four times more likely. In fact, this stigma article that I read said that it was 10-20 times more likely for a person to be victimized than the average person walking down the street.
DR. PETER KRAMER: I want to ask about the President’s Commission on Mental Health and the Mental Health Systems Act. I was, I guess, just entering the Carter administration at a low level in mental health when that Act came through. I know some of the principles, and you write, I think appropriately and bitterly, about the Act not going into effect.
But I went back and spoke to some of the doctors involved and they said, well, you know, that Act had a good deal of effect, conceptually, in that much of what has happened, both in the states and federally, in terms of parity, which is this ability to have equal effective insurance for mental illnesses as for other illnesses, that a good deal of that change is really attributable to the work of the Commission. I wonder what you think, with a broader look, about what was important about what you did and what remains.
ROSALYNN CARTER: Well, I made a speech a couple of years after we came home from the White House. And Herb Parties(?) was in the audience. He was, I think, in the NIH when Jimmy was …
DR. PETER KRAMER: He was head of NIH.
ROSALYNN CARTER: When Jimmy was President. And he was in the audience. I didn’t know it. But I got a letter from him saying, “Don’t feel too bad about it because states”… He told me about different states that were taking our recommendations and putting them into force in their states. Anyway, he said that it had made some differences. This was just a few years after. But it didn’t make enough difference. Look what’s happened and look how far backwards we went. Well, I don’t guess we went backwards, we didn’t go forward, certainly, if the President’s Commission in ’78 and the President’s Commission in 2002 made the same recommendations.
DR. PETER KRAMER: What do you make of that Commission in 2002? That was under the second President Bush.
ROSALYNN CARTER: That’s right.
DR. PETER KRAMER: And it was a Commission that was very interested in medication. Also, at the same time, interested in empowering patients in some ways.]
ROSALYNN CARTER: I don’t know. I spoke to them not too long before they published the recommendation. The man who headed it, it was a Chairman … Anyway, it was my mental health symposium at Carter Center so I knew him well. He was a mental health commissioner in Ohio, I think, and I know his name.
DR. PETER KRAMER: I’m not going to help you. [laughter]
ROSALYNN CARTER: Well, I knew his name. He’s good, he’s really good. But I told him that the greatest difference in our Commission and this Commission was recovery. I mean, that’s the thing that’s happened. That’s the greatest thing that’s happened, that we can now know that people can recover from mental illnesses and that’s what they used as the theme of the Commission, so I was pleased with that.
DR. PETER KRAMER: And recovery is one of those interesting issues. I do want to hear a little more about it. I think it is a wonderful concept that occurs sometimes. I think sometimes, also, though, the notion that people should be recovered rather than just somewhat better gets doctors to pursue illness so vigorously that there is a piling-on of medications and so on. I wonder what exactly recovery ought to mean.
ROSALYNN CARTER: Well, recovery doesn’t mean they're cured. But people can recover just like you can from high blood pressure if you take your medicine all the time so your high blood pressure doesn’t get worse. And people who take their medicine live a full and fulfilling life, a full and contributing life. But what’s so exciting to me is the consumer movement. I’ve seen so much of it with …Well, to go back a little bit, Judy Chamberlain wrote a book in 1978 entitled On Our Own, something about a patient’s alternative to mental healthcare. She thought that people living with mental illness ought to have some say-so about their treatment.
And we got her to come and report before our committee. And then, she became-- she helped work with our committee. And, for the first time, we had a section on human rights, human and legal rights of people with mental illness. We had a whole section on that in our 1978 report. But she started having meetings with consumers and discussing having some say in their treatment. Anyway, two of those people, in the early movement with her, one is on my Mental Health Taskforce at the Carter Center. He started the first consumer section of the Alabama State Government. One that I work with all the time at the Carter Center started the first -- he was one of them too. Both of them -- one had schizophrenia, Joel was totally out of it for eight years, in the hospital for two and a half years and then in and out of group homes and everything. He’s recovered. He has his consultant business. He’s the one that I was telling you about is teaching respect to the doctors and nurses in Georgia.
DR. PETER KRAMER: I actually wish I remembered his name because …
ROSALYNN CARTER: Joel Slack(?)
DR. PETER KRAMER: I had him on a radio show I was hosting.
ROSALYNN CARTER: And the other one was one of those early people. He had bipolar, and he said he did outrageous things because he thought God was telling him to do them and he tried to do them. He lost his wife. He lost his business. He was, for seven or eight years too and he said after two attempts of suicide and the third hospitalization, he made another pact with God that he was going to go to new places and see new things and meet new people. He started taking his Lithium ad then he started writing and getting some money from his books. He started the first consumer program in Georgia. Hhe said, “This is what made all of the difference.” We had a good Democratic Governor back then. He was able to get Medicaid to pay consumers to work with other consumers, recovered consumers. We now have, in Georgia, over 500 certified peer specialists and they're getting paid by Medicaid to work with those who are not recovered.
I had one young man that I had been talking to. I wrote about him in my book. Now, they have their own health and wellness center. It’s just one in the state, now, but they're working around the state. I sent him over there. I think they can stay for two weeks, maybe two. Anyway, he had been having all kinds of trouble. He had, I guess, a policeman …Anyway, who had gone through the crisis intervention training on how to recognize people with mental illness, so that they go to the mental health facility instead of the jail. He would work with them every once in a while.
This young man lived with his grandmother, and she would have to call them because he was acting up. But he went to that place and he’s just a totally different person, and he could not thank me enough for sending him there. He said, “I’ve been in all kinds of group homes. I’ve been everywhere.” But now, he’s just changed. I mean, I see it. I have seen it. It is so great.
DR. PETER KRAMER: You worry so much about federal involvement in healthcare, at least it seems a debate in this country in which people do worry. And it strikes me as extraordinary that Medicare was flexible enough to …
ROSALYNN CARTER: Medicaid.
DR. PETER KRAMER: … Medicaid, I'm sorry, to allow peer counseling, and to recognize …
ROSALYNN CARTER: Well, it’s in a lot of states now. That’s what he’s doing now, going around the country, getting other states to adopt it. And Medicaid, I think, depends on what the Governor of the state says.
DR. PETER KRAMER: We have a number of questions from the audience. Some of them are in the same area, and they overlap with a question that I asked you before we came out here, which is, what you make of the debate over medication. There's so much worry -- some quite legitimate -- about the role of the pharmaceutical companies in influencing what research is published and doctors’ views of medication, debate about whether children, in particular, are over-medicated, as well as concerns that people don’t have adequate access to medication when they need it. Where are you with that?
ROSALYNN CARTER: Well, I think with children, particularly, there is a debate in the whole mental health community. I don’t think anybody has good answers to that. But I think, with children, we don’t know. I mean, I don’t think children have had medications like they're having now long enough to have the research, or to know what’s going to happen to them in the future. But the only thing I do know is that so many children have been helped, that I would hate for them not to be taking medication. But, one thing I think that has to be done is to monitor the child continuously when they're taking some kind of medication. Just watch for any sign of trouble.
DR. PETER KRAMER: Right. I mean that seems, to me, with a lot of signs of uncertainty, the one thing that’s well established that if you're going to give medication, you need to monitor people, children and adults both.
ROSALYNN CARTER: That’s right. And also parents should not focus entirely on medication and not go for therapy too. That’s important.
DR. PETER KRAMER: That’s right. I think that, in some ways, there’s another set of questions about the insurance industry. The insurance coverage seems to favor medication over psychotherapy, that insurers are afraid of what happens once they start allowing a good deal of psychotherapy. I wonder what you think about that. I’ll see if I can find the exact question here. But the gist of it is to what degree people, even with insurance, can actually get adequate mental health coverage, in an age of parity.
ROSALYNN CARTER: I don’t know whether they get appropriate coverage or not. I think insurance companies do favor medication. Insurance companies try to get away with covering somebody with spending as little money as they can spend. It probably is that psychotherapy is more expensive than medications, so just give them medications.
DR. PETER KRAMER: Yeah. But we don’t know. I think, over the long run, it might be …
ROSALYNN CARTER: You can tell that I get so upset with insurance companies. I know how long and hard we worked on trying to get parity. We had to get statistics showing that from companies that cover their employees, showing that it didn’t break the bank. And it didn’t matter how many we got, they still wouldn’t look at it, no officials would. They all listen to the insurance companies and just the whole insurance issue rubs me wrong.
DR. PETER KRAMER: That does seem one of the areas where research has very little effect. And if you show that there are savings to be had by putting money into mental healthcare, it’s not convincing.
ROSALYNN CARTER: What do you think? [laughter]
DR. PETER KRAMER: You know, that would be a whole other interview. [laughter] But I am a big fan of psychotherapy. I taught psychotherapy at Brown for 15 years, and I think it is very cheap, relative to the benefits that people get. Especially this intensive work with people with serious mental illness, that you often can make big leaps when people have not been exposed to …
ROSALYNN CARTER: I have a question for you. We have a grandson with depression. He has medication, he’s fine. He’s a junior in college and making good grades. Two days ago, one of his classmates died. We haven't found out whether it was suicide or not. And this is his high school graduation class. He’s a junior in college. This is the ninth young person to die of his close friends, five of them with suicides.
DR. PETER KRAMER: Oh my goodness.
ROSALYNN CARTER: What do we do about him?
DR. PETER KRAMER: You know …
ROSALYNN CARTER: I called the National Guard Hotline, that I had just been in this session talking with the National Guard and the woman from Georgia was there. She said she was the hotline for Georgia. I called. I wouldn’t give them his name because I think it would hurt him more for somebody to call him than it would …I mean, I just don’t want them to call him now. But I wanted to know what to do.
DR. PETER KRAMER: You know, I think that people with mental illness are vulnerable. It both is true that they're vulnerable and also, in some way, that partly understandable and partly, maybe, less understandable. They are more exposed to stress than other people to terrible events.
I think you know the answer to your own question, which is when things like this happen, it’s important for people to step up, see what’s going on, talk, don’t just cross your fingers and hope that things are going to be all right, that someone whom he trusts ought to be able to talk to him and continue to follow up.
And it certainly does happen that, at these times, doctors have to adjust medications or increase the frequency ... I think one reason that …You asked about psychotherapy earlier. I think we’re preaching to the choir, that one reason psychotherapy is important is that it’s important to have one of these ongoing relationships based on trust that’s there when things go wrong.
ROSALYNN CARTER: He has that. And our son and his wife have …Every time this happens, they have all his friends together, you know, because they're friends of the ones that died, too. They get them all together, and they stay at their house for spend the night parties, you know, to be together. But it’s frightening to me.
DR. PETER KRAMER: It is frightening. You know, I think this is …I don’t know if this is a good place to come to a conclusion. You know, you make it entirely clear, spontaneously, that this issue is one that affects everyone. There isn't anyone, in any family, who does not have members who need help. And that extends from these diseases that, luckily, we’re really quite well able to treat.
I think one of the complexities for mental health services on college campuses is that they are, today, getting young people who, maybe, wouldn’t have been able to go to college at all. They're getting a collection of people who are, thank goodness, more vulnerable in the sense that that means there are opportunities for them, while vulnerable.
These issues are universal and extending to diseases that we’re much less good at treating, which also are in all families. I don’t know if you want to stop by saying something a little about the special interest of the Carter Center on Mental Health and what programs you're involved with and which ones you think are especially important.
ROSALYNN CARTER: At the Carter Center?
DR. PETER KRAMER: Yeah.
ROSALYNN CARTER: Other than mental health?
DR. PETER KRAMER: No, in mental health.
ROSALYNN CARTER: In mental health. I don’t know. We had the first Conference on Prevention, how many years ago? I think it was 1999 or 2000 or something like that. Anyway, we invited everybody in the world that we knew who had worked on prevention. It was one of the most fascinating things I’ve ever seen. 85 people came from overseas at their own expense, like the Head of the NIMH of Germany and The Netherlands. It was just really wonderful. They got so excited about it.
We don’t have any special program on prevention. But let me tell you this, because this is exciting, Georgia has been under court order to do something about the mental health system since the Olmstead Act, which was, I think, 1999, that said that every disabled person had to be in a community setting in a good facility close by or something like that. I don’t know exactly what it is, but it was for a community center.
Georgia just never complied. Then in 2007, I think, the Atlanta Journal Constitution did this big exposé about our state hospitals. 136 people had died, one 14 year old girl from bowel obstruction. I mean, for things that should not have happened. So NIMH got the Justice Department to investigate. They did, and they told them they had to provide community centers.
To make a long story short, the Carter Center got involved for the first time in local. We work on stigma and trying to influence legislation, to influence good health of people with mental illnesses. But we got involved with that because advocacy groups asked us to and advocacy groups were split, and they never worked very closely together. So we got involved and we started to get others involved. I spoke to the Pastors Association in Atlanta, with stakes in most of north Georgia. We spoke to the Sheriffs Administration, got the sheriffs, just different organizations. We got a big lobbying group and working against the state, and I even had the state and the federal government -- the judiciary meeting at the Carter Center, anyway.
On October the 19th-- I’ll always remember, because it’s Amy’s birthday. Well, the Bush administration, like 24 hours before he went out of office had handed down a settlement. I have to go back. And that’s what we were fighting now, because we didn’t like the settlement. It just said people had to have services when they left the hospital. But they didn’t say what kind or anything. That’s just what it said. They did it hurriedly.
So anyway, the judge was on our side. On October the 19th, the settlement came in, and they said that Georgia now has to provide community services for every person in an institution. It has to be done by 2015. We’ve got a long job ahead. But there are states all over the country that have the same kind of cases lined up. So now it’s going to go nationwide. I’m so excited about it. Because if we get …[applause] … If we can get people out of those institutions, into the community, I think everything will change.
DR. PETER KRAMER: I think this is a terrific note on which to end. Thank you, Mrs. Carter, for spending the afternoon with us. Mrs. Carter is going to be signing books outside the hallway here. If you would remain seated and let her find her way there, and there are books for sale in the shop, and she’ll be doing signings. You’ll be able to say a word to her then.
ROSALYNN CARTER: Good. I enjoyed it.
DR. PETER KRAMER: Thank you. I did as well. [applause]