Remembering Rosemary Kennedy

In this week of remembrances about the assassination of President Kennedy, I couldn’t help but think of all that his family did on behalf of people with intellectual disabilities. And that leads me to the tragic story of Rosemary Kennedy.

Like everyone who was alive and aware of the world on November 22, 1963, I remember

Rosemary Kennedy

Rosemary Kennedy

exactly where I was when I learned that President John F. Kennedy had been assassinated. I was in the sixth grade in Champaign, Illinois, and I heard it from one of my classmates.

I don’t have as vivid a memory of the day I learned the truth about Kennedy’s younger sister Rosemary, who had some kind of disability that was kept secret from the public for many years.

There has never been a definitive diagnosis for Rosemary, whom the family eventually claimed had an intellectual disability. By some accounts, she could read and write and perform mathematical calculations, all skills that would put her IQ above the 75 threshold for mental disability.

No room for being different

Still, there was something not quite right with Rosemary. She developed and learned more slowly than her siblings and as she entered adulthood, she became increasingly frustrated and prone to rages. Her father Joe Kennedy had lofty political ambitions for his family and didn’t want to risk Rosemary causing a scandal of any kind.

So in 1941, when Rosemary was 23, Joe Kennedy hired two surgeons – Dr. James W. Watts and Dr. Walter Freeman – to perform a prefrontal lobotomy on her.  It was an experimental treatment at the time, designed to relieve psychiatric symptoms.

The operation was a disaster, leaving Rosemary unable to speak or care for herself. She spent the rest of her life in an institution.

As mentioned before, in all the writings about Rosemary, there remains some disagreement about her diagnosis. Jack El-Hai, who wrote a biography of Walter Freeman, once told me there can be no doubt that Rosemary had a mental illness and not an intellectual disability. It would have been medical malpractice to perform a lobotomy on someone who had a mental disability.

Indeed, Dr. Watts, interviewed many years after Rosemary’s operation, confirmed that he believed she suffered from depression.

Which stigma do you want?

Whatever the truth, the Kennedy family always maintained that Rosemary had an intellectual disability.  To admit that there was mental illness in the family might have been damaging to John’s chances at the presidency. Yet, there were also stigmas associated with intellectual disability.

Nevertheless, Joe set up a foundation dedicated to research and public policy concerning intellectual disabilities. His daughter Eunice ran the foundation and also started Special Olympics, which promotes athletic achievement for people with mental disabilities.

The story of Rosemary Kennedy is a heartbreaking one, to say the least. All that can be said looking back on it is that some good came from the high price she paid for being different. The rest is pure tragedy.

Fifty years of reform

An important milestone occurred last week in the history of how our nation treats people with intellectual disabilities. Fifty years ago, on Feb. 5, 1963, President John Kennedy issued a “Special Message to the Congress on Mental Illness and Mental Retardation.”

President Kennedy signs the Maternal and Child Health and Mental Retardation Planning Amendments of 1963 and hands signing pen to Eunice Kennedy Shriver.

President Kennedy signs the Maternal and Child Health and Mental Retardation Planning Amendments of 1963 and hands signing pen to Eunice Kennedy Shriver.

In it, he made several recommendations regarding changes he felt were necessary in the treatment of people with mental illnesses. He also urged congressional action on many of the 97 recommendations issued by his President’s Panel on Mental Retardation.

This panel was appointed shortly after Kennedy was inaugurated and after it was revealed that he had a sister, Rosemary Kennedy, who had a disability.

Combating ‘mental retardation’

In this historic 1963 message, President Kennedy announced a “National Program to Combat Mental Retardation.” Many cases of “mental retardation,” he said, are caused by inadequate health care for expectant mothers and young children. To remedy this problem, the president proposed a greater emphasis on maternity care, especially for women in low income areas, and on infant health care.

He also called for an increase in community services and a move away from the use of “outmoded,” “distant custodial institutions.”

Eight months later, President Kennedy signed legislation that would put into place many of the recommendations he had made. A second piece of legislation, enacted shortly before the president’s death in November 1963, provided funding for research centers that would study the causes of intellectual disabilities. Also included was increased funding for community-based care.

The report card

At that time, more than 175,000 individuals with intellectual disabilities were housed in large, state-run residential facilities – most of them in remote, rural locations.  It would take about six years for that population total to decline, but it has done so annually ever since.

Today, around 29,000 individuals reside in these types of institutional settings. A total of 12 states and the District of Columbia no longer operate large residential institutions.

According to the JFK Library, “President Kennedy and his family forever changed public attitudes toward people with intellectual disabilities. Their influence on related policies and programs can still be seen today.”

In the 20 years after President Kennedy’s administration, Congress passed 116 pieces of legislation providing support for people with intellectual disabilities and their families.

We’re not done yet

Still, much remains to be done. In a monograph titled “Honoring Eunice Kennedy Shriver’s Legacy in Intellectual Disability,” David Braddock of the Coleman Institute at the University of Colorado pointed out that thousands of people remain on waiting lists for community services.

Family support services are sadly lacking nationwide and many students with intellectual disabilities are still educated in separate facilities.

But an enormous amount has been accomplished. We who care about and work with people with disabilities owe a great deal of gratitude to President Kennedy, Eunice Shriver and the Kennedy family for all they have done in this arena.

The Kennedy legacy

When most people think about the Kennedy dynasty, they think of politics and power and wealth. How could you think otherwise when three of the Kennedy brothers became U.S. senators and one became president?  One might also think of tragedy and heartbreak – with the assassinations of John and Robert and the deaths of Joe Jr. on the World War II battlefield and Kathleen in a plane crash.

Of course, when I think of the Kennedy legacy, I think of all these things. But I also reflect on all the family has done to advance the standing of people with intellectual disabilities. As is so often the case among people who take up causes, the Kennedys had personal experience with disabilities. John’s oldest sister Rosemary had a disability of some kind – the family always said it was an intellectual limitation. There is some debate about that diagnosis; nevertheless, Rosemary was the impetus for the family’s activism in the field of disabilities.

The Kennedys as activists

Rosemary’s younger sister Eunice prevailed upon John, when he became president, to establish the first President’s Committee on Mental Retardation. During his administration, he was the first president in history to welcome a person with an intellectual disability into the White House.

Later, Eunice and her husband Sargent Shriver founded the Special Olympics, providing athletic competitions worldwide for people with intellectual disabilities. Today, millions of athletes participate in sporting events in 170 countries.

The Shrivers’ son Anthony Kennedy Shriver built on their legacy by founding and building Best Buddies, an organization dedicated to creating one-to-one relationships and employment opportunities for people with intellectual disabilities. It is a volunteer organization, pairing college and high school students and adults with peers.

Best Buddies recognizes that people with intellectual disabilities are often excluded from society. By creating meaningful friendships, Best Buddies seeks to change public perceptions and to help people with intellectual disabilities live richer, more meaningful lives.

My dad was a Best Buddy

As I’ve mentioned in previous posts, decades ago, long before the founding of Best Buddies, my dad filled a similar role for his younger brother. He tried to include his disabled brother in neighborhood baseball games and he protected him from tormenters. Later in life, I became my uncle’s Best Buddy, taking him out for hamburgers and for rides in the park.

As I’ve learned in writing about my uncle, people with intellectual disabilities want the same things as everyone else – love, belonging, and a sense of purpose. I’m grateful there are organizations like the ones the Kennedys founded to help people with special needs find a place in this world.