Rosalynn Carter, now 83 years old, is the Former First Lady and Co-Founder of the Carter Center (with Former U.S. President and husband Jimmy Carter). The Carter Center’s Mental Health Program works to promote awareness about mental health issues, reduce stigma and discrimination against those with mental illnesses, and achieve greater parity for mental health in the U.S. health care system. In Mrs. Carter’s new book, Within Our Reach: Ending the Mental Health Crisis, she shares her knowledge from almost 40 years of work in the mental health care field, including the problems with stigma and the mental health care system.
How did you become aware of the problems in our mental health care system?
What kind of progress have we made since you started in this field almost 40 years ago?
What is wrong in our society that causes people not to get help?
How does the Carter Center's Mental Health Program work to reduce stigma?
What are some of the problems in our mental health care system?
I understand that your mother had depression in her later years?
What do you think families can do to address the problems we face?
How did you become aware of the problems in our mental health care system? Before Jimmy came into office as Governor in Georgia, there had been a Community Mental Health Centers Act passed in 1963, which called for closing the huge, overcrowded state mental hospitals and replacing them with community mental health centers. In Georgia, there had been a big expose of the terrible conditions in our Central State Hospital, a very large psychiatric facility (12,000 people were in a facility built for 3,000 patients). People were moved out of the hospital, but there were no community-based services available yet to them. I found that this was not just happening in Georgia; it was happening all over the country.
While we were campaigning, everyone was asking me what we were going to do to help their loved ones who were suffering from mental illness and had no place to go. At one of his campaign sites, I asked Jimmy publicly, “What are you going to do to help people with mental illness when you become governor?” He said “We’re going to have the best program in the country and I’m going to put you in charge of it!” When he did become governor, (and then president of course), I dedicated myself to this cause.
What kind of progress have we made since you started in this field almost 40 years ago? I am both excited and frustrated about what has happened since I began this work. The exciting news is that because of all the research that has been done on the brain over the years, we know now that mental illness is a brain disease. We know how to deal with mental illness so that people can be diagnosed, treated, and go on to lead full and productive lives. One in four Americans has a mental illness, that means we have the ability to help a huge number of people and their families in this country.
What frustrates me are the problems with accessing and providing mental health services to people who need them. When Jimmy was in office, we established a gubernatorial and then a presidential commission to research the mental health care problems in our country and identify solutions. We found that the system was broken and so we proposed many initiatives. Then, 25 years later in 2003, President Bush had a commission research mental health care problems again and found the same thing--that the system is in shambles, there is no way to fix it, and we need to start over.
What is wrong in our society that causes people not to get help? It is the stigma that is so bad. We have been working on this issue at the Carter Center since we first created it. We try to measure if any of the efforts that we make to reduce stigma are working. A recent study done at Columbia and Indiana University said that because of all the work the mental health community has done to raise awareness, today most people (85%) do understand that mental illnesses are neurological illnesses, just like other biological illnesses, and that they are not the fault of the individual. But surprisingly, this has not reduced stigma. People are still afraid of individuals with mental illnesses.
The media projects an image of people with mental illnesses as violent. But, the truth is that people with mental illnesses are four times more likely to become victims of violence than the general population. What we need to do now is to focus on personal connections. For example, if you know someone, say a neighbor who you care about, and then you learn that this person has bipolar disorder, you accept the person. We can reduce stigma by helping other people get to know someone with a mental illness.
How does the Carter Center’s Mental Health Program work to reduce stigma? At the Carter Center, we’ve always worked on getting out the word that mental illnesses are brain disorders. One day, we were brainstorming what more we might do to reduce stigma, and we thought, “Why don’t we educate the press?” So, we’ve been doing that now for 11 years through our Journalism Fellowships. We have trained more than 100 journalists on what mental illnesses are and how to report on them accurately, without creating or perpetuating stigma. This helps the reporters with their news stories, and it also has an effect on the journalists’ peers in the newsroom. Over the years, we have reached many major news organizations including PBS, the Washington Post, Newsweek, and 60 Minutes.
What are some of the problems in our mental health care system? I worry a lot about children. We know that mental illnesses are developmental. Fifty percent of mental illnesses are diagnosed by age 14, and 75% by age 24. Most develop early. If someone can be diagnosed early, the illness might not develop further, and it can definitely be treated.
I want new mothers to look out for possible signs of mental illness in their children. Does the child bond with me? Does the child reach normal developmental milestones? How does the child relate to their peers? How do they do in school? If there is deviation from the norm, then mothers need to take their children to see a mental health care professional. Everyone needs a physical and a mental health checkup. If you catch the problem early, you can often reduce or mitigate the effect of the illness.
Another priority is addressing the mental health needs of the elderly. Stigma is really an issue among this population. I am an older American, and I grew up in a small town with 635 people. There were two people in my town that we all knew suffered from a mental illness. I remember one man who walked behind me on the streets and tried to reach out to touch me. It really scared me.
Older Americans have this picture of mental illness in their minds. They don’t realize that depression, for example, is so common or that they may even have it. They go to their primary care doctor and complain about physical pains instead. In one recent study mental health issues came up in more than 20% of elderly patient visits to their primary care doctors, but on average the doctors spent only two minutes discussing these issues with the patient. It is no wonder so much depression goes untreated. Older Americans can be helped. One model that works is having a psychologist in a clinic or nursing home who can counsel the primary care doctor and monitor treatment.
I understand that your mother had depression in her later years? Yes, when my mother was elderly, she wouldn’t live with us so she eventually had to go to an assisted living facility. She became very depressed. I tried very hard to convince her to accept help for her depression, but she refused. One time she called and said “They think I’m crazy, they sent over a psychiatrist!” I said, “But mother, this is what I have been working on forever, trying to help people understand that it is ok to accept help.” There were so many other people in the facility that I saw who also needed help. They just sat around rocking in chairs, looking miserable, suffering because their mental health problems went untreated.
What do you think families can do to address the problems we face? I think the best thing they can do is to get professional help. Today we know how to treat people, so they don’t need to suffer. Also, finding a peer for someone with a mental illness is very useful. In Georgia, we have peer support specialists who have recovered from a mental illness and are available to help others. Larry Fricks, who suffered from bipolar disorder and is now in recovery, started this peer support movement. He had been psychotic and kept doing detrimental things--things that he believed “God told [him] to do.” He made two suicide attempts. Finally, he made a new pact with God and started his journey on recovery. He began taking lithium, volunteering, and even writing again.
He realized that people with mental illnesses can become empowered, have a say in their treatment, and once recovered, can help others suffering from a mental illness. He created a training program for consumers to become certified peer specialists, convinced Medicaid to reimburse for these services, and now there are over 500 peer specialists in Georgia alone. This program is spreading across the country but is not yet available in all states. Families can contact their state mental health department to see if there is a certified peer support program available in their own area. Information is also available from the Depression and Bipolar Support Alliance (www.dbsalliance.org).