What Rosalynn Carter understood about mental health

Few people leave the world with as much grace or influence as Rosalynn Smith Carter, who died Sunday at the age of 96. While she called her autobiography “The First Lady of Plains,” to many she was also the first lady of mental health reform. Decades ago, she took bold stances on mental health topics that, today, have become conventional wisdom: Mental health is health, stigma is deadly, and people with mental illness deserve to be part of society instead of hidden away in overcrowded, dangerous facilities.

Her leadership in this critical issue began in Georgia, when a young Jimmy Carter was elected to the state senate, and continued for decades; only recently did she step back from the Carter Center’s mental health section. Often she was called upon to guide, inform, or brainstorm, as she did in 2002 when Mike Hogan, chair of President George W. Bush’s newly named President’s New Freedom Commission on Mental Health, asked her to speak to the commission — the first such presidential body since the one her husband had established a quarter-century prior.

“Twenty-five years ago, we did not dream that people might someday be able actually to recover from mental illnesses. Today it is a very real possibility. … For one who has worked on mental health issues as long as I have, this is a miraculous development and an answer to my prayers,” she told the commission. As she told me when I was writing “Fighting for Recovery: An Activists’ History of Mental Health,” working with people like Larry Fricks, a pioneer in the peer services movement, had helped shape her understanding about recovery and its possibility.

That was a throughline to her work: She put humanity at the center of her efforts and believed that society should not give up on anyone. That helps to explain her concern with ending stigma, a powerful force that denies the respect due to people struggling with mental health challenges and often keeps them from living fully in their communities.

Much of her spirit came from her ability to see the personal behind the condition or the situation. There was Tommy, Jimmy’s distant cousin, whom they visited at the Georgia Central State Hospital in Milledgeville. These visits opened a window to the deplorable and dehumanizing conditions for 13,000 Georgians then crammed into this state psychiatric hospital. With friends and associates, she volunteered and visited hospitals in Georgia and, shortly after Jimmy was elected, attended the 1976 National Mental Health Association (now Mental Health America) convention in Philadelphia. There, she told her friends that her husband would establish a commission to study mental health.

As Georgia’s first lady she said the high point of her work was mental health reform. During one of her husband’s gubernatorial campaigns, she recounts in “The First Lady of the Plains,” she met distraught parents whose youngsters struggled with a developmental disability or a mental illness. They asked her: Would Jimmy Carter help them if he were elected governor? When she relayed that question on their behalf, he replied yes.

True to his word, after he was elected in 1971 he announced the formation of a governor’s commission to investigate and implement mental health reforms. And Rosalynn Carter polished her skills. She visited all 12 of Georgia’s psychiatric hospitals and volunteered one day a week at the Georgia Regional Hospital, working on every floor where, she said, she “listened and learned.” She read to children, talked with adults trying to stay sober, and gardened with the elderly. In the end, Georgia followed the commission’s directions to downsize the obsolete institutions.

Another of the commission’s charges expanded the community mental health centers from 23 to 134, thus enabling people living at home to receive services. It turned into a dry run for the next commission her husband would name and she would serve — this time with confidence, alacrity, and experience.

In 1977, one month after his presidential inauguration, Carter established the President’s Commission on Mental Health (PCMH). Due to nepotism rules, Rosalynn Carter could only be the honorary chair, but nobody doubted who was in control. Soon she turned the East Wing into a nerve center for mental health reform. Twenty people were selected as commissioners, and they held hearings in Chicago, Tucson, Philadelphia, Nashville, and San Francisco featuring former patients, clinicians, service providers, and local politicians.

In October 1980, this all-consuming work led Congress to pass the Mental Health Systems Act, which focused on the unmet needs of a whole category of people often overlooked: minorities, the elderly, children, people who were poor, and those in rural America. Performance grants required contracts, and this brought accountability. Patients’ rights would be identified. A prevention program would become part of the National Institute of Mental Health (NIMH). These, and many others, could have been transformative.

But celebrations were short-lived. The next month, Ronald Reagan won a landslide election to the presidency, dealing a profound blow to the first lady. Once he took office, the new Republican president smothered mental health reform. Even before the inauguration, he sent a delegation to the NIMH with a message about cutting the budget and ending services. This was followed up with the national block grant program, which eviscerated a public health approach to health and replaced it with a funding program for states. Mental health became part of the block funded with black lung disease, rodent control, and blood pressure reduction programs.

Rosalynn Carter left politics and sorrow behind when she returned to Plains, Georgia. Perhaps her most enduring work occurred in the years that followed. Holding tight to her mission for mental health reform, when the Carter Center opened in Atlanta, the Mental Health Program would perpetuate her priorities. She was no longer able to influence government policy in the same way, but her new role allowed her to fight stigma and help train journalists.

It’s not surprising that for the first annual Rosalynn Carter Symposium on Mental Health in 1985, stigma was the topic. And for the next two decades, the annual Rosalynn Carter Mental Health Symposium became a centerpiece for staging reform. In her 1998 book “Helping Someone With Mental Illness,” Carter wrote that for many years her goal had been to “see the stigma of mental illness eradicated.” She knew that people were reluctant to share their experiences with mental illness because they feared discrimination and rejection. One member of the PCMH, Priscilla Allen, had deeply affected her when she described having to fabricate references because landlords didn’t rent apartments to people who had once been in a psychiatric hospital.

To guarantee the press understood how it contributed to stigmatizing people with mental illness required informed journalists. She was furious when a 1979 Newsweek article discussing the PCMH called patients inmates. “Inmates,” she scolded the editor, “was a word for criminals, not mental patients.” She would later hear that a journalist didn’t think mental health reform law was “a sexy topic.” Making a note to self, she wrote, “We do not have the luxury of giving in to these views. The facts — the impact of m[ental] illnesses on the nation are too compelling to ignore.”

In 1996, the Carter Center announced a fellowship program that has now supported 220 people worldwide, helping them learn about science, treatments, policies, and especially how patients and former patients were meeting a behavioral health challenge. She also believed that more respectful and accurate language might slow, perhaps even deter the persistent stigma. In 2015, the center made available “The Journalism Resource Guide on Behavioral Health,” which advises reporters to use words describing someone with a condition, not the condition itself and avoid terms like “psycho” or “lunatic” that perpetuate stereotypes. It’s just one example of how her legacy will live on.

Peter Bourne, a psychiatrist and long-time special assistant to Rosalynn Carter, regretted being out of the country when the MHSA was signed. In a note to his friend Rosalynn, he said, “You have made years of hard work and dedicated investment in the problems of the mentally ill pay off in a way that will touch positively the lives of every mentally ill person in the country. It is only because you cared. … We all owe you a very great debt.” I couldn’t agree more.

Phyllis Vine is a historian and journalist and the author of “Fighting for Recovery: An Activists’ History of Mental Health Reform” (Beacon Press).