Carter still first lady of mental health

“I knew that if he was elected,” she says, “that was what I was going to work on.”

She has done just that for four decades. Starting with Central State, Georgia’s notorious 168-year-old psychiatric hospital, and moving on to the nation’s fragmented and often inadequate mental health system, Carter has become one of the most persistent and effective advocates for change.

But she was an accidental activist, as Carter relates in her new book, “Within Our Reach: Ending the Mental Health Crisis (Rodale Books, $22.99).” Released April 27, the 175-page volume follows Carter’s path from a would-be governor’s wife to head of a state mental health commission after her husband’s election in 1970. It recounts both her high-profile advocacy for mental health during her husband’s presidency and the work that has become her lasting legacy: her influential mental health program at the Atlanta-based Carter Center.

Mostly, though, the book concisely describes both the promises of recent research into the causes and treatment of mental illness and the continuing breakdowns in care. The young, elderly, veterans of the wars in Iraq and Afghanistan, and people traumatized by disasters such as Hurricane Katrina are especially vulnerable, she writes.

And the nation’s jails and prisons have become the largest mental health facilities, populated by people who once were held in psychiatric hospitals. They haven’t been “deinstitutionalized,” Carter writes, so much as “reinstitutionalized.”

The book, written with Susan K. Golant and Kathryn E. Cade, has generated a great deal of cross-generational publicity. Carter’s publicity tour has landed her not only on such old-media stalwarts as NBC’s “The Today Show,” but also on alternative news sources such as “The Daily Show with Jon Stewart” on Comedy Central, where the host, without sarcasm, described her as “filled with goodness.”

Although she writes about mental health services across the nation, Carter gives special attention to her home state. Her mental health center intervened in a federal investigation of Georgia’s state psychiatric care system, arguing that greater oversight is needed to ensure the state does not violate the civil rights of patients.

In a recent interview, Carter acknowledged she knew little about mental illness or the people who suffered from it before her husband launched his unsuccessful campaign for governor in 1966.

“Jimmy had a cousin who was in and out of Central State,” she said. She recalled visiting the hospital with her husband for a social event; when she danced with his cousin, she didn’t know the rules prevented close contact. “Everybody was laughing,” she said.

On the campaign trail, though, she heard again and again about relatives who were living in terrible conditions at the hospital in Milledgeville — or, worse, on their own with no treatment.

Three years earlier, in 1963, Congress passed the Community Mental Health Centers Act, the first legislation to require states to move people from large institutions to smaller, community settings. The problem, Carter said, is that Georgia had few community-based services for patients leaving Central State — a problem that persists today.

In the book, she recounts an experience that forged her determination to improve the mental health system. Before dawn one morning, she stood at the gates of an Atlanta cotton mill, asking for votes from workers headed home from the overnight shift. Noticing a small, stooped, older woman, obviously tired, Carter said, “Good morning. I hope you’re going home to get some sleep.”

“I hope I can get some, too,” the woman said. But she told Carter that she had a daughter at home who was mentally ill; her husband cared for the daughter while she worked all night, and she took over when he left in the morning.

“The image of the woman haunted me all day,” Carter writes. “I kept thinking about how much she and her family suffered and how terrible it must be for them to know that there was no end in sight. I knew it was useless for her to try to get help. There was none available.”

Carter carried such memories through her years in the governor’s mansion and the White House and beyond. Even now, she said, many people — strangers, usually — tell her their heart-rending stories about the mental health system’s failings, seemingly beyond repair.

Still, Carter said, she finds reason for hope.

Research into brain activity has led to treatments that allow real recovery for many people with mental illness, she said. And federal law now requires most health insurance policies to give equal coverage, or parity, for psychiatric disorders.

“There are too many things happening now to keep us back,” she said. “I really do think there is a momentum — and, actually, a revolution.”

The biggest remaining problem, she said, is neither financial nor legal, but cultural. The stigma of mental illness lingers, she said, in movies and television programs, in news stories — even in her own family.

Several years ago, her late mother had an extended hospital stay. Once when Carter visited, her mother exclaimed, “They must think I’m crazy — they sent a psychiatrist to see me.”

“I’d been working [on mental health issues] for 25 years,” Carter said. “I just said, ‘Mother!’ ”

Carter laughed as she told the story. But she said later that she wants people to know how serious a problem she considers the stigma of mental illness. It’s “a moral issue,” she said, one that demands a sophisticated, lasting solution.

She downplays her own role in pushing for that solution. “I just keep on plugging away,” she said, “trying to educate the public.”