Opinion: Rosalynn Carter’s powerful legacy of advocacy

Former First Lady’s long support of mental health, in a sense, paved the way for the announcement of her own dementia.
Rosalynn Carter marks 95th birthday with butterflies

Rosalynn Carter marks 95th birthday with butterflies

The Carter family recently shared publicly that former First Lady Rosalynn Carter has dementia. The announcement is especially meaningful because of Mrs. Carter’s own legacy on the issues of mental health and caregiving. Thanks to her lifelong advocacy, issues that were once shrouded in shame and secrecy have since been elevated to the global stage.

“We recognize, as she did more than a half century ago, that stigma is often a barrier that keeps individuals and their families from seeking and getting much-needed support,” the family said in a statement. “We hope sharing our family’s news will increase important conversations at kitchen tables and in doctor’s offices around the country.”

Her persistent fight against stigma has characterized her dogged pursuit of better treatment for people with mental illness for more than 50 years. It all began in rural Georgia while campaigning for her husband, who was running for governor. At a factory gate early one morning, she heard the pain of an exhausted mother leaving a night shift to go home to care for her daughter who had a serious mental health problem.

Kathryn Cade.

Credit: Caroline Joe

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Credit: Caroline Joe

Deeply affected by the woman’s plight, Mrs. Carter took her concerns to her husband and asked what he would do to bring this issue out in the open. Once elected governor, Jimmy Carter created a commission to recommend reforms to mental health services in Georgia and appointed Mrs. Carter as a member. At the time, she said there were only five other people who would join her in speaking out about mental health.

I first met Mrs. Carter in 1976 when I began working on President Carter’s presidential campaign as a young staffer. In the years since, I witnessed how she stayed constantly engaged on the topic and listened carefully to the needs of ordinary Americans.

As First Lady, she led the President’s Commission on Mental Health, whose final report laid the groundwork for major advances and reforms. She fought to increase funding for research, training and prevention programs. She rallied support among advocacy groups and professional organizations across the country. She testified before Congress. She championed federal legislation to support mental health, never hesitating to pick up the phone to speak with lawmakers directly.

Her hard work paid off. In 1980, President Carter signed the Mental Health Systems Act.

After leaving the White House, she started a mental health program at The Carter Center, the nonprofit she and President Carter co-founded in 1982. In 1996, she created the Rosalynn Carter Fellowships for Mental Health Journalism. Their stories helped bring mental health out of the shadows and into the public dialogue.

She has been a tireless advocate for parity, making the case that insurers must cover mental health services the same way they do treatment for high blood pressure or a broken leg. She returned again to Congress to lobby, and in 2008 federal parity legislation was enacted. She then turned her attention to the states, including her own. Last year, the Georgia General Assembly passed the Mental Health Parity Act in a bipartisan, near unanimous vote.

She expanded her efforts beyond our shores by helping the West African country of Liberia, which had been ravaged by two civil wars, develop a mental health program. Working with the Carter Center, Liberia has created a system that includes frontline mental health workers throughout the country. Other countries are assessing the work for replication.

Much has changed in the decades since Mrs. Carter first learned that the systems of support for mental health were broken. The stigma that for so long held back progress in this field has begun to lift. No longer are most people afraid to seek help.

Yet despite this progress, Mrs. Carter has never forgotten the plight of that exhausted mother at the factory gate, the caregiver for a vulnerable daughter. Today, there are more than 53 million Americans serving as family caregivers, and many are experiencing their own mental health challenges as a result of the stress, strain and isolation of their caregiving responsibilities.

In 1987, Mrs. Carter founded the Rosalynn Carter Institute for Caregivers to complement her mental health program at The Carter Center. She recognized that the two issues are inextricably linked and knew that in order to address one, we must also address the other.

The COVID pandemic strained family caregivers in new and profound ways and set back the state of mental health in every country. It laid bare how much remains to be done. Most recently, the National Institutes of Health reported that rates of anxiety, depression and substance use disorder have increased since the pandemic began. The U.S. surgeon general has called youth mental health “the defining public health issue of our time.”

As Mrs. Carter and her family continue their caregiving journey, we need to redouble efforts to continue her work.

Too many people who are poor, disadvantaged, or marginalized still do not have access to good mental health care. Suicide has become an epidemic among young people. And the burden of caregiving falls disproportionately on those most vulnerable.

We know what to do. We simply must find the political will to invest in programs and policies that address these issues -- respite care and paid family leave for family caregivers, training a whole new generation of mental health professionals to work with youth and mental health coverage for all Americans.

We must bring the perseverance, compassion and empathy that was the hallmark of Mrs. Carter’s advocacy to a much more robust national conversation on mental health and caregiving.

The goals she pursued for so much of her life are within reach. Now we must finish the job.

Kathryn Cade was Rosalynn Carter’s director of projects while she was First Lady and continued to advise her on her mental health program after she left the White House. Cade serves on the boards of The Carter Center and the Rosalynn Carter Institute for Caregivers.