FFew people leave the world with as much grace and influence as Rosalynn Smith Carter, who died Sunday at the age of 96. Although she called her autobiography “The First Lady of the Plains,” to many she was also the first lady of mental health reform. . Decades ago, she took bold stands 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 rather than hidden in overcrowded and dangerous institutions.
His leadership on this crucial issue began in Georgia, when a young Jimmy Carter was elected to the state Senate, and continued for decades; she only recently retired from the mental health section of the Carter Center. She has often been called upon to guide, inform or reflect, as she did in 2002 when Mike Hogan, chairman of President George W. Bush’s New Freedom Presidential Commission on Mental Health, asked her to speak to the commission – the first of its kind. presidential body since the one her husband had created a quarter of a century earlier.
“Twenty-five years ago, we didn’t imagine that one day people would actually be able to recover from mental illness. Today, that is a very real possibility. … For someone who has been working 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 wrote “Fighting for Recovery: An Activists’ History of Mental Health,” working with people like Larry Fricks, a pioneer of the peer services movement, helped shape her understanding recovery and its possibilities.
This was the common thread of her work: she placed humanity at the center of her efforts and believed that society should abandon no one. This partly explains her focus on ending stigma, a powerful force that denies respect to people struggling with mental health issues and often prevents them from living fully in their communities.
Much of his wit came from his ability to see the personal side behind the condition or situation. There was Tommy, Jimmy’s distant cousin, who they visited at Georgia Central State Hospital in Milledgeville. These visits opened a window into the deplorable and dehumanizing conditions of the 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’s election, attended the 1976 convention of the National Mental Health Association (now Mental Health America) in Philadelphia. There, she told her friends that her husband was going to create a commission to study mental health.
As Georgia’s first lady, she said the highlight 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 young people were struggling with intellectual disabilities or mental illness. They asked him: Would Jimmy Carter help them if he were elected governor? When she relayed this question on their behalf, he said yes.
True to his word, after being elected in 1971, he announced the formation of a governor’s commission to investigate and implement mental health reforms. And Rosalynn Carter has been honing her skills. She visited all 12 of Georgia’s psychiatric hospitals and volunteered one day a week at 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. Ultimately, Georgia followed the commission’s instructions to scale back outdated institutions.
Another commission decision expanded the number of community mental health centers from 23 to 134, allowing people living at home to receive services. This turned into a dry run for the next commission her husband would appoint and which she would serve – this time with confidence, eagerness and experience.
In 1977, a month after his presidential inauguration, Carter created the Presidential Commission on Mental Health (PCMH). Due to nepotism rules, Rosalynn Carter could only serve as honorary chair, but no one was in doubt who controlled the event. Soon she transformed the East Wing into a nerve center for mental health reform. Twenty people were selected as commissioners and held hearings in Chicago, Tucson, Philadelphia, Nashville and San Francisco with former patients, clinicians, providers and local politicians.
In October 1980, this tedious work led Congress to pass the Mental Health Systems Act, which focused on the unmet needs of an often-neglected category of people: minorities, the elderly, children, poor people and those in rural areas. America. Performance grants required contracts, which led to accountability. Patient rights would be identified. A prevention program would be part of the National Institute of Mental Health (NIMH). These, and many others, could have been transformative.
But the celebrations were short-lived. The following month, Ronald Reagan won a landslide presidential election, dealing a major blow to the first lady. Once in office, the new Republican president stifled mental health reform. Even before the inauguration, he sent a delegation to NIMH with a message about cutting the budget and ending services. This was followed by the National Block Grant Program, which gutted the public health approach to health and replaced it with a funding program for states. Mental health became part of the block funded by the black lung disease, rodent control and blood pressure reduction programs.
Rosalynn Carter left politics and heartbreak behind when she returned to Plains, Georgia. Perhaps his most lasting work occurred in the years that followed. True to its mission of mental health reform, when the Carter Center opened its doors in Atlanta, the mental health program would continue its priorities. She was no longer able to influence government policy in the same way, but her new role allowed her to combat stigma and contribute to the training of journalists.
It’s no surprise that at the first annual Rosalynn Carter Mental Health Symposium in 1985, stigma was the topic. And over the next two decades, Rosalynn Carter’s annual mental health symposium became the centerpiece of the showpiece for reform. In his 1998 book “Helping Someone With Mental Illness,” Carter wrote that for many years his goal was 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. PCMH member Priscilla Allen touched her deeply when she described having to fabricate referrals because landlords wouldn’t rent apartments to people who had already been in a mental hospital.
Ensuring the press understands how it contributes to the stigmatization of people with mental illness requires informed journalists. She was furious when a 1979 Newsweek article discussing PCMH called patients prisoners. “Inmates,” she chided the editor, “was a word for criminals, not the mentally ill.” She later learned that a reporter didn’t think mental health reform was “a sexy subject.” Taking note of this, she wrote: “We do not have the luxury of giving in to these views. The facts – the impact of mental illness on the nation are too compelling to ignore.
In 1996, the Carter Center announced a fellowship program that has now supported 220 people around the world, helping them learn about science, treatments, policy, and especially how patients and former patients were facing a behavioral health challenge. She also believed that more respectful and precise language could slow, or even deter, persistent stigma. In 2015, the center made available “The behavioral health journalism resource guide“, which advises journalists to use words that describe a person with an illness, not the illness itself, and to avoid terms like “psychopath” or “crazy” that perpetuate stereotypes. This is just one example of how his legacy will live on.
Peter Bourne, a psychiatrist and longtime 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 ensured that years of hard work and dedicated investment in the issues of the mentally ill have come to fruition, in a way that will have a positive impact on the life of every mentally ill person in the country. It’s only because you care. …We all owe you a very great debt. I couldn’t agree more.
Phyllis Vine is a historian and journalist and author of “Fighting for Recovery: An Activists’ History of Mental Health Reform” (Beacon Press).
