Shattering Stigma

Rosalynn Carter continues her crusade to bring mental illness out of the shadows-and onto equal footing with physical ailments.

Published in the Autumn 2010 issue of Emory Magazine.

Underneath Emory's Briarcliff Campus, a system of concrete subterranean tunnels connects most of the seventeen buildings, forming an underground labyrinth worthy of an ancient castle in a dark fairy tale. Built in the mid-1960s as part of the foundation of Georgia Mental Health Institute-the site's previous incarnation-the network was meant to provide safe, efficient passage for patients from one part of the facility to another. Since the institute closed in 1997, the tunnels have been a source of much speculation, fascination, and spine-tingling tall tales for students and others in the surrounding community.

Undoubtedly built with good intentions-and useful in their time-the tunnels also kept mentally ill patients hidden from the outside and compounded public perceptions that they should be held apart from society, lest they pose a threat to safety, or at the least, decency.

Now the unused underground warren might well serve as a symbol of the outdated attitudes and practices in mental health care that former First Lady Rosalynn Carter has been battling for most of her public career.

In her new book, Within Our Reach: Ending the Mental Health Crisis, coauthored with Susan Golant and Kathryn Cade, Carter calls on early memories of campaigning with former Georgia Governor and U.S. President Jimmy Carter to describe how she became a champion of mental health care. In many of the small Georgia towns she visited, the people she encountered told her stories of relatives at Central State Hospital, the major psychiatric facility in Milledgeville. There were few treatment options for mental illness at the time and many patients, regardless of ailment, prognosis, or age, wound up at the hospital because there was simply nowhere else to go. Conditions and treatment were said to be poor.

"When I first got involved, there was little understanding of the causes of mental illness, the complex relationship between brain development and environmental factors, or how to determine the most effective treatment," Carter writes. "The world has changed in many ways since then."

One of the most significant shifts has been the gradual fading of large institutions such as Central State Hospital and Georgia Mental Health Institute in favor of smaller clinical settings. This trend-heralded by the Mental Health Centers Act of 1963-is a positive one, says Carter, but as state facilities have closed, the more localized services needed to replace them have not kept pace with demand.

In 1980, President Carter signed into law the Mental Health Systems Act, a bill that Mrs. Carter had been deeply involved in crafting and pushing through Congress. But not long afterward, the Reagan administration largely abandoned the plan. Since then, Carter says, little progress has been made at the federal and state levels; a 2002 government study found many of the same systemic problems and shortfalls that her work had uncovered in 1978.

"The report," she writes, "also confirmed that stigma remained a major obstacle to progress in our field."

What is different today, says Carter, is the explosive increase in scientific knowledge and understanding of mental illness that has taken place during the past thirty years. Brain scan technologies, groundbreaking research into genetic and environmental influences, and the development of powerful medications and treatments have given clinical practitioners new tools and patients new hope.

Now, Carter says, the system needs to catch up with these advances, ensuring their availability, affordability, and recognition as medical necessities.

"The timing is right, because there is more awareness about mental health issues than ever before," Carter said in a recent interview. "The whole mental health community is ready to do something. There is a parity issue when it comes to other kinds of medical care."

At the heart of Carter's work, which is centered in the Carter Center Mental Health Program, is her determination to chip away at the stigma that has shadowed mental illness for many decades, placing it in a different-and darker-category in the public consciousness than physical ailments. "Mental illnesses are just like other illnesses," she says. "They can be diagnosed and treated successfully. People can recover and lead productive lives, and go on to help others lead better lives."

As advocates like Carter have helped to promote that understanding, mental illness is slowly coming to be viewed and treated more like other health problems. In 2001, the Federal Employee Health Benefits Program was amended to provide equal mental health and substance abuse coverage to more than eight million government employees, with less than two percent increase in total cost. That helped pave the way for the Paul Wellstone and Peter Domenici Mental Health Parity and Addiction Equity Act of 2008, which applies to private insurance plans that cover mental health services. Carter calls the law a "great victory."

Within Our Reach brings together the work of an impressive range of mental health professionals from around the country, from practicing psychiatrists to lab researchers to scholars such as Emory's own Benjamin Druss, Rosalynn Carter Chair in Mental Health at the Rollins School of Public Health. Carter counts Druss among a "new breed of researchers who believe that scientific research must be relevant to the people who will ultimately be using it."

Druss is particularly focused on life expectancy for the mentally ill, who generally live about twenty-five fewer years than those without psychiatric problems. He has studied whether ongoing nurse care and disease management programs, similar to those offered to patients with chronic physical illnesses, might boost health and increase life span, with positive results.

The practical application of discovery, to be brought about through this sort of direct connection among researchers and caregivers, is a high priority for Carter and a theme sustained throughout the book.

"I think it is good for policymakers because I state both the problem and the solution," she says. "For people with mental health issues, it gives them hope. I actually wrote it for people who don't know much about mental illness. Most people, I think, would get a lot out of reading it."

Carter also hopes the book, and her ongoing work in The Carter Center's Mental Health Program, can help influence large-scale health care reform efforts to give equal attention to mental health. She is heartened by new emphasis on prevention of health problems and eager to see that focus reach out to encompass mental illness, too.

"We have learned that mental illnesses are developmental, so the earlier we can detect risks and begin treatment, the better we can do to keep them from developing into so-called mental illnesses," she says. "There are programs working with parents who have depression to try to prevent children from getting it. We know that for women who may suffer from post-partum depression, steps can be taken before the baby is born. The whole future of medicine is going to be looking at prevention."

This year's Rosalynn Carter Symposium on Mental Health Policy, hosted by Carter each fall at The Carter Center, will highlight the special plight of military veterans and their families when it comes to mental health-particularly those in the National Guard and Reserves. Lingering attitudes about toughness still prevent many vets from seeking help when they need it, Carter says, and posttraumatic stress disorder can be as crippling as an injury from a land mine. "The military culture has been not to show weakness," she says. "We have to help people understand that it's not weakness, it's illness, and they can be helped."

Carter also has worked with the media to overcome stereotyping about mental illness in the news and in fictional portrayals on television and film. The Rosalynn Carter Fellowships for Mental Health Journalism have helped dozens of journalists dispel harmful myths with solid, in-depth reporting. Still, she says, most of the stories about mental health continue to be negative. "There are not enough stories about people who have been helped, who have recovered and are leading good lives in their communities," she says. "I'd like to see a lot more of those."

In Within Our Reach, Carter does her part to make up for that shortfall. The book is loaded with facts and figures, doctors' names, institutions, and studies, but these are woven into a warm and conversational work that is, at its core, a series of personal stories. Carter seems to remember just about every person with mental illness she has ever met, as well as those professionals and advocates who join her in the battle against it. From the woman she encountered outside the cotton mill in Atlanta who worked tag-team shifts with her husband so that one of them could be home with their mentally ill daughter, to the depressed and addicted man who recovered to become an accomplished mental health professional, to the diagnosed schizophrenic who became a successful artist thanks to the correct medication-Carter says each new story strengthens her resolve to see progress made.

"Research shows that the best way to overcome stigma is for people to realize that the woman you talk to from the house next door, or the friend from work, has a mental illness, and there is nothing to be afraid of," Carter says. "You are probably sitting in an office next to a person with mental illness right now."