Rosalynn Carter: Stigma has `a long way to go`

Some months ago, Lori Ashcraft, Ph.D., an editorial board member and longtime contributor of the popular “Tools for Transformation” column, suggested that Behavioral Healthcare ought to interview Rosalynn Carter, wife of former President Jimmy Carter and one of the world’s most prominent mental health advocates. The exclusive interview that follows, along with other stories about the 28^th Rosalynn Carter Symposium on Mental Health in Atlanta last November, are proof of what a good idea and a little determination can accomplish.

There are no better words to introduce the comments of Mrs. Carter than those of Lori, who joined me at the Symposium and volunteered her skills as a reporter and observer to extend our coverage. Lori writes:    

In 1966, the idea of advocating for people with mental illnesses was even less popular than it is today, cloaked in shame, stigma, and discrimination. Mrs. Carter took it on anyway and for the past four decades has addressed issues related to consequences of mental illness that cry out for reinvention and transformation. She seems to come from a place that overrides fear and shame and goes right to compassion. And it’s the compassion that has fueled her commitment to a segment of our population that had been dismissed as having nothing meaningful to contribute to our society and needing nothing more than ‘to be taken care of.’

Rosalynn Carter has been one of the longest and strongest voices for transforming the views held about mental illness and the systems that supposedly treat it. She was an early supporter of the recovery movement and believes that it has set the foundation for a new set of beliefs regarding the potential of those who have been diagnosed. She is a strong supporter of the peer movement, saying that, ‘next to recovery, it is the best thing that has happened yet.’

In chairing her 28^th Mental Health Symposium, Mrs. Carter now focuses her passion on community inclusion, an evolution of the needs expressed by her fellow Georgians so many years ago. She wants people who are on their recovery journey to have access to community resources so they will be able to contribute in a meaningful way to their communities. The timing could not be better: the Symposium’s participants and findings will be harnessed to develop policy recommendations to support this end.

There is a sense of urgency in her voice as she describes her hopes for the future.

Mrs. Carter: I’m glad to speak with you today. It’s a very important subject. 

BH: What was it that got you involved in the cause of mental health?

Mrs. Carter: I became interested while campaigning with my husband, when he ran for governor in 1966. He got into that race late, after our leading Democratic candidate had a heart attack, leaving Lester Maddox, a very popular segregationist, as the only candidate. When no one else would take him on—this being the midst of the civil rights days—Jimmy decided that he would run.  

I had never campaigned before, and it was already eight to 10 weeks before the election, so Jimmy (then a Georgia state senator) went one way and I went the other. Every day, somebody would ask me, ‘What will you do for my mentally ill loved one at Central State Hospital?’  There had just been a big exposé about the hospital in the news—it was happening all over the country. The Community Mental Health Act had been passed [in 1963], but the state was moving people out of the hospital before the any services were there for them. I became very concerned about the issue, and even though Jimmy lost that time, I kept learning more about it.

When Jimmy became Governor in 1972, he appointed a commission to improve services to mentally and emotionally handicapped people.  That’s where my real education began . . .

BH: Where are we today, and where do we need to go in terms of mental health treatment in the United States?   

Mrs Carter: We have a long way to go.  But there are movements in the mental health field that are very important right now.  One involves community services. Another is community inclusion. Another is how treatment is moving toward recovery.  And, there’s the idea of integrating services, mental health and primary care, getting rid of the separation between physical and mental health care.  All of those are good. 

But, the stigma and discrimination against mental health issues has always been so bad. Stigma curtails funding for services, it hurts programs in the community, and stands in the way of getting policymakers—the people who can make a difference—interested in the issue.

To me, stigma has come a long way and yet, it still has such a long way to go.  I say that because of the perspective of having seen what it was like 41 years ago. When I started with the Governor’s Commission in the 70s, nobody wanted to talk about the issue, nobody wanted to be associated with it.  At that time, we had great problems in even getting people involved in the meetings, since they didn’t want to be identified with mental illness. We’ve seen great changes since then.

Stigma is lifting a little bit for those with depression and anxiety disorders, but we still have a long way to go, particularly for those with more serious mental illnesses.

BH: What are the barriers to community inclusion?

Mrs Carter:  The Symposium is about removing the barriers to social inclusion in the community for those with mental illnesses. There are barriers that limit their ability to get a job, to get housing, to get the things that all of us want to have a good life.

One of my friends—who is in recovery from mental illness—travels to hospitals and teaches those who work with the mentally ill that respect is the number one thing. If we treat people with respect, we let them know that we care about them and that we’ll reduce the barriers that exist in the community.

It is also important for us to integrate our services in the community—primary care and mental health care—so that everybody can go to one place to get health services.  I think that would make so much of a difference because so many people with mental illnesses are living in the community. People could see them going for their services, just as we all do for any health problem, like a physical.  Notice I don’t like the distinction between physical and mental health—it is all just illness to me. 

I believe it’s important for people to see those in recovery living, working, raising families, going for services when they need them.  I believe that this would go a long way toward inclusion in the community, toward reducing stigma, and improve our acceptance and respect for them.

BH: What might those in treatment or recovery give back to their communities?

Mrs Carter:  I have seen many examples of those living in recovery from mental illnesses giving back to their communities.  Next to the recovery movement, the peer support program is one of the best things that has ever happened in the field.  The peer support program started in Georgia. A friend of mine living with bipolar disorder was asked to develop a peer program with the Georgia Department of Health and after a few years, he was able to get Medicaid to pay for peer-supported services.  It’s a program that works wonders, and its spreading across the country.

BH:  What are your thoughts on the recovery movement?

Mrs Carter:  The recovery movement is the greatest thing that has happened in my time in the mental health field.  Even when Jimmy was President and I worked with the President’s Commission on Mental Health, I never—we never—dreamed anyone would recover from mental illness.  Yet, today, we are. And now, we’re even talking about prevention.

Recovery has made such an impact, I think, due to peer support programs where you see people who were once so sick doing really well.  That [recovery] approach has come so far as a means of treating mental illnesses. And, as we see more and more people recovering, more and more people speaking out, I hope that it will become the way we treat all people with mental illnesses. That movement is already underway and I hope I can see that movement completed.

BH: Do peers have a special role in community inclusion efforts?

Mrs Carter:  Absolutely. I believe that they have a vital role to play everywhere. But we’ll need to change public policy—that’s the most powerful way to end discrimination.  We’ve seen this done in the civil rights movement, in the campaign for people with HIV/AIDS, and I think it can be done for those who live with serious mental illnesses. Today, their life expectancy is 25 years shorter because they frequently have so many untreated health problems.  

Peers will be the ones leading the way—they have already gone from managing mental illnesses to managing wellness programs, for example.  In Georgia, we have one wellness center for those in recovery and are developing three more, helping those in recovery to eat right, exercise, and feel better. The peers are just doing such a great job.

Changing public policy is so powerful, so important. I hope that we can make such an impact with social inclusion that people will become interested in how we work with and treat people in our communities with mental illnesses. I don’t mean just treatment—but how we look at them—as good citizens who need help.  I believe that social inclusion, community services, peer support programs—all of those things are moving in the right direction.  

BH:  What would you say to my readers, those who manage and deliver behavioral health services in the community?

Mrs Carter:  I want everybody to know that there should be no shame or embarrassment about having or living with mental illnesses.  Today, mental illnesses can be treated effectively—in many cases far more effectively than many other illnesses—and the overwhelming majority of people who live with mental illnesses can live fulfilling and valuable lives in the community.  You can spread the word about that and about the fact that recovery is possible.

Professionals can see to it that people are treated with respect and work as advocates, along with peer support specialists and others in the community. We need to look at what’s standing in the way of those with mental illnesses being able to lead a fulfilling life in the community and break down those barriers by changing public policies.  The more we can do about that, the better off we’ll all be.

There is so much potential in people who have mental illnesses. If we give them the things, the opportunities, to make life better they will—just as I have seen so many do already. 

NOTE:  Mrs. Carter is scheduled to appear at the 2013 National Council for Behavioral Health Conference in Las Vegas in April.