Note: The terminology around intellectual and developmental disabilities has changed significantly since the time periods talked about in this story. Because of that, some of the direct quotes from President Kennedy, documents, titles, and other sources contain outdated terms such as mental retardation. All instances in the story have been removed or replaced with intellectual and developmental disabilities in order to reflect the change in terminology. Brackets indicate where those changes have been made. Links to the original documents have been provided.
By Emily Leclerc, Waisman Science Writer
When President Kennedy made his inaugural speech in 1961, there was no mention of initiatives on intellectual and developmental disabilities (IDDs). Yet, the efforts by his administration and the Kennedy family to improve the lives of individuals with disabilities and their families are one of their most enduring legacies. The Waisman Center, University of Wisconsin-Madison bears the indelible fingerprints of those efforts.
Every day researchers and clinicians at the Waisman Center work side-by-side to determine the causes and consequences of intellectual and developmental disabilities and transform this knowledge into interventions and treatments for conditions like autism, Down syndrome, and cerebral palsy. The center is one of the original 12 (now 15) multidisciplinary intellectual and developmental disability research centers (IDDRCs) launched under the direction of the Kennedy administration as part of a national “program of action” on intellectual and developmental disabilities.
The inspiration behind these efforts was Rosemary Kennedy, who had an intellectual disability and was one of the president’s nine siblings.
It quickly became evident as she grew that Rosemary had some developmental delays and behavioral challenges.
Origins of a Presidential Plan
“Early in life Rosemary was different,” wrote Eunice Kennedy Shriver in an article for the Saturday Evening Post in 1962. Eunice was one of the Kennedy siblings, an ardent advocate for individuals with disabilities, and the founder of Special Olympics. “She was slower to crawl, slower to walk and speak than her two bright brothers. My mother was told she would catch up later, but she never did.”
It quickly became evident as she grew that Rosemary had some developmental delays and behavioral challenges. Only three years apart in age, Eunice and Rosemary were close. Eunice was always a staunch advocate for Rosemary, doing what she could to help her sister. In 1941, when Rosemary was 23, she underwent unsuccessful brain surgery that resulted in impaired speech and motor abilities. After that, Rosemary was sent to St. Coletta of Wisconsin, a residential facility for individuals with intellectual and developmental disabilities, where she would spend the rest of her life.
At this time in history, intellectual and developmental disabilities were not openly talked about. Instead, people with those disabilities were hidden from the public or sent away to live out their lives in institutions. There was a stigma surrounding IDDs and scant resources to assist people and their families. Inspired by Rosemary and now with a presidential platform, Eunice and President Kennedy set out to reform the systems and support for individuals with IDDs.
With Eunice as a driving force behind him, President Kennedy quickly began putting plans in motion. A mere eight months after his inauguration, he revealed that he was forming a panel of experts to address the nation’s issues with IDDs. “I have today announced my intention to appoint a panel of outstanding scientists, doctors, and others, to prescribe a program of action in the field of [intellectual and developmental disabilities]… The central problems of cause and prevention remain unsolved, and I believe that we as a country, in association with scientists all over the world, should make a comprehensive attack,” President Kennedy said during a press conference on Oct. 11, 1961.
“I have today announced my intention to appoint a panel of outstanding scientists, doctors, and others, to prescribe a program of action in the field of [intellectual and developmental disabilities]… The central problems of cause and prevention remain unsolved, and I believe that we as a country, in association with scientists all over the world, should make a comprehensive attack,” President Kennedy said during a press conference on Oct. 11, 1961.
This announcement was the beginning of an important panel which is now referred to as The President’s Committee for People with Intellectual Disabilities. The panel was charged with identifying comprehensive solutions for how the federal government should approach intellectual disabilities. A year later on Oct. 16, 1962, the 27-member panel presented President Kennedy with a 200-page report that outlined a national effort and action plan to address intellectual and developmental disabilities through research, clinical services, training, and support.
“Dear Mr. President,” wrote Leonard Mayo, the chair of the panel and a renowned social worker and advocate, “I have the honor to submit herewith [this report]… We have devoted the intervening months to carrying out this assignment and have prepared for your consideration recommendations concerning research and manpower, treatment and care, education and preparation for employment, legal protection and development of federal, state and local programs.” The report provided more than 100 different recommendations on how to improve the nation’s response to IDDs.
One of the main suggestions the panel proposed was to increase research on intellectual and developmental disabilities to facilitate better understanding of the conditions themselves and to find new and improved treatments and therapies.
“More research support and capacity is therefore necessary not only specifically with respect to [those with intellectual and developmental disabilities] but in the basic areas of health, learning processes, and other fundamental human processes which will apply to all people alike,” stated the report. “The gaining of new fundamental knowledge can benefit not only the U.S. citizenry but all of mankind.”
This need for new knowledge would come in the form of an addition to the National Institutes of Health (NIH) and the establishment of research centers across the nation.
Establishing a national framework
A day after the panel presented President Kennedy with their report, public law 87-838 was authorized. This law officially established the National Institute of Child Health and Human Development (NICHD) within the NIH. The NICHD’s mission is to, “lead research and training to understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all.” Research conducted by the NICHD has contributed greatly to our understanding of pregnancy, overall human development, and to medical rehabilitation of people with disabilities. In 2007, the NICHD was renamed the Eunice Kennedy Shriver National Institute of Child Health and Human Development in recognition of Eunice’s contributions and advocacy for people with IDDs.
Alongside the NICHD, President Kennedy planned to establish research centers across the nation with a specific focus on intellectual and developmental disabilities. A few months later on Feb. 5, 1963, President Kennedy delivered a special message to Congress that detailed his recommendations for addressing IDDs. Page 13 of the letter outlined the very early beginnings of the Intellectual and Developmental Disabilities Research Centers (IDDRC) we have today.
“Our single greatest challenge in this area is still the discovery of the causes and treatment of [intellectual and developmental disabilities],” President Kennedy writes. “To provide an additional focus for research into the complex mysteries of [intellectual and developmental disabilities], I recommend legislation to authorize the establishment of centers for research in human development, including the training of scientific personnel.” The letter outlines that three of these centers had already been budgeted for with an ultimate goal of 10.
Another important facet mentioned in the message is the structure under which these centers should be built. “The importance of these problems justifies the talents of our best minds. No single discipline or science holds the answer. These centers must, therefore, be established on an interdisciplinary basis,” writes President Kennedy.
Finally, on Oct. 31, 1963, only 22 days before his assassination, President Kennedy signed bill 88-164 into law which authorized the funding for the construction of dedicated research centers across the U.S. “I am delighted to approve this bill,” President Kennedy said. “It was said, in an earlier age, that the mind of a man is a far country which can neither be approached nor explored. But today, under present conditions of scientific achievement, it will be possible for a nation as rich in human and material resources as ours to make the remote reaches of the mind accessible. The mentally ill and [those with intellectual and developmental disabilities] need no longer be alien to our affections or beyond the help of our communities.”
“Our single greatest challenge in this area is still the discovery of the causes and treatment of [intellectual and developmental disabilities],” President Kennedy writes. “To provide an additional focus for research into the complex mysteries of [intellectual and developmental disabilities], I recommend legislation to authorize the establishment of centers for research in human development, including the training of scientific personnel.”
With all of the groundwork laid, the twelve original IDDRCs began to take shape. Sites to build these new research centers were chosen across the country. The University of Wisconsin-Madison was one of the first sites to be selected, at the urging of Harry Waisman, MD, PhD. Waisman was a prominent researcher and physician known for his work on phenylketonuria – a rare hereditary condition that prevents a person from metabolizing the amino acid phenylalanine which can lead to profound intellectual and developmental disabilities if left untreated. Waisman was a key figure in advocating for the mandatory newborn screening of PKU and was the first to successfully treat a child with PKU in Wisconsin. By the time Waisman began pursuing the establishment of an IDDRC at UW-Madison in 1965, he was already well-connected with the Kennedy family.
“It is a pleasure to extend my best wishes and congratulations to Dr. Harry A. Waisman and his associates on the occasion of the dedication of the Joseph P. Kennedy Memorial Laboratories at the University of Wisconsin Medical School,” the telegram reads.
The Kennedy and Waisman Connection
Waisman and the Kennedy family were connected in several ways. Waisman was one of Rosemary Kennedy’s physicians at St. Coletta of Wisconsin where she required regular medical care. The Kennedy family was also very supportive of Waisman’s work and helped to establish his research laboratories in 1961. The laboratories, named the Joseph P. Kennedy, Jr. Memorial Laboratories, opened in 1963 with support from the Kennedy Family Foundation. The labs were a precursor to the Waisman Center. Eunice made several trips to Madison to meet with Waisman on behalf of the foundation but was unable to attend the dedication on November 20, 1963. Senator Edward M. Kennedy and Sargent Shriver, Eunice’s husband, flew in for the dedication in her absence. President Kennedy, while not there in person, sent a telegram to Waisman congratulating him on the opening of the lab.
“It is a pleasure to extend my best wishes and congratulations to Dr. Harry A. Waisman and his associates on the occasion of the dedication of the Joseph P. Kennedy Memorial Laboratories at the University of Wisconsin Medical School,” the telegram reads. “It is my hope that through the facilities of this and other such laboratories throughout the country, many more of the causes of [intellectual and developmental disabilities] now afflicting millions of Americans will be discovered and that preventative measures to this most serious medical problem will be developed.”
The dedication of the laboratories and the telegram took place two days before President Kennedy’s assassination.
Two years later in 1965, Waisman advocated for UW-Madison to apply for funding to establish an IDDRC on campus. UW-Madison became one of the first two sites chosen to receive the funding but was one of the last constructed. Waisman was present at the groundbreaking for the building in 1971 but unexpectedly passed away later that year before the building was completed in 1973.
The building was named after Waisman to honor his vision and work. Fifty years later, the Waisman Center continues to be a beacon of interdisciplinary research and clinical care in intellectual and developmental disabilities upholding the legacy set forth by President Kennedy and his family.
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Learn more about the Waisman Center's 50th Anniversary, including events, history, stories and images: 50 Years | 1973 - 2023 |