Birth of Hope for People with Intellectual Disabilities: 50 Years and Counting

The Dominick P. Purpura Department of Neuroscience is firmly rooted in the Rose F. Kennedy Center Intellectual and Developmental Disabilities Research Center. The IDDRC celebrates its 50th year this coming November.

 

Although we have attacked on the broad front the problems of mental illness, although we have made great strides in the battle against disease, we as a nation have for too long postponed an intensive search for solutions to the problems of the mentally retarded.* That failure should be corrected.” – President John F. Kennedy October 11, 1961

*At the time these words were spoken “mental retardation” was the accepted term for the condition we now know as “intellectual disability.”

 

A week after President Kennedy spoke these words at a news conference, Eunice Kennedy Shriver hosted a meeting of the 27-member President’s Panel on Mental Retardation at the White House. The panel, headed by Dr. Leonard Mayo, was charged with delivering—within a year—a report on what the nation should do to address the problem raised by the president.

The panel quickly broke into two factions, one headed by Dr. Seymour Kety and other scientists who emphasized the importance of basic research, the second by Dr. Anne Ritter and other behavioral/social scientists who advocated for high-quality clinical care. In 1962, after a year of debate, the President’s Panel delivered its report. It recommended development of research facilities (called Mental Retardation Research Centers or MRRCs) to advance understanding of the causes of the condition, and university-affiliated facilities (UAFs) to address the need for excellent clinical care for those affected.

At around the same time, an article appeared in the Saturday Evening Post in which Eunice Kennedy Shriver revealed for the first time that her sister, Rose Marie Kennedy, had intellectual disability. People soon realized that the president’s October 1961 news conference had held personal meaning; one of his siblings was affected. In October 1963, just three weeks before he was assassinated, President Kennedy signed into law PL88-164, which established 12 MRRCs and 18 UAFs.

The MRRCs were to be funded by a newly established section of the National Institutes of Health (NIH), known as the National Institute of Child Health and Human Development (NICHD), which had been created as a result of lobbying efforts made by Eunice Kennedy Shriver and others on behalf of the Kennedy family. Following widespread recognition of the pejorative nature of the term ' mental retardation,' the NICHD changed the name of the MRRC's to Intellectual and Developmental Disabilities Research Centers (IDDRCs).

A key advisor to the Kennedys during this period was Dr. Robert Cooke, a prominent pediatrician at Johns Hopkins who himself had two children with intellectual disability. A colleague of Dr. Cooke's in Baltimore was another pediatrician, Harry Gordon, who in 1962 was recruited to Albert Einstein College of Medicine. Once here, Dr. Gordon, undoubtedly through the influence of Dr. Cooke, set out to bring one of the coveted 12 MRRCs to Einstein.

His effort was successful, and in 1966, Rose and Robert Kennedy attended groundbreaking ceremonies for the construction of a new center, which would bear the name of the president's mother.

As Rose Kennedy said during this momentous event, "Fifty years ago when I was seeking help for my own daughter who was retarded, there was no place to turn. I was bewildered, frustrated and heartbroken to learn how little was known and how little could be done ... l hope my name, as a mother of a retarded child, may bring faith and hope and confidence to other mothers, as they realize the perseverance and zeal, the self-sacrifice and devotion, of scientists and doctors working here."

Over the past half century, we have come to better understand the causes of intellectual disability and ways to treat it. The Rose F. Kennedy Center has been at the forefront of many of these developments; in 1974, the center also gave rise to one of the first departments of neuroscience in the country, under the leadership of Dr. Dominick Purpura, who succeeded Dr. Gordon as the center's director.

To celebrate these successes, and in anticipation of future advances in intellectual disability research and treatment, we are holding a 50th anniversary symposium for the Rose F. Kennedy IDDRC on November 2, 2017. Please mark your calendars for this important event.

 

- Steven U. Walkley, director, the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center (RFK IDDRC)