Persistent prairie pragmatists: LSI’s role in the history and future of human development science

Persistent prairie pragmatists: LSI’s role in the history and future of human development science

We were nearly 200 strong, scientists, researchers, staff, students, friends and leaders from the state and national disability communities when we commemorated and celebrated this 50-year endeavor of doing science and doing good on September 29 and 30, 2006.

And we were only the representatives of 350 current employees and the several thousands who have studied, supported, taught and discovered here since Dick Schiefelbusch was given two rooms, a part-time secretary and the charge to bring to life an entity that existed in name only in 1956.

Through this collective effort the Bureau of Child Research and the Schiefelbusch Institute for Life Span Studies helped bring about a sea change in the status and outcome of people with disabilities and disadvantages over the last 50 years.

Declaring the LSI a “national treasure,” keynoter Dr. Yvonne Maddox, Deputy Director of the National Institute of Child Health and Human Development said that, “the Institute is truly a testimony to how the concept of scientific research was first envisioned, as a means for translating the most basic discoveries to improving the health of the nation.”

Thought-provoking questions were raised and examined by the distinguished panel of national disability research and policy leaders and our own distinguished Mabel Rice and Steve Fowler. 

In a future world “flattened” by globalization that assigns supreme value to those who can compete, how will children with significant and sustained challenges in deciphering and negotiating symbolic and non-symbolic systems compete?

This challenge was posed by Edward Kame’enui, Commissioner for Special Education Research, Institute of Education Sciences, U.S. Department of Education and Director of the Institute for the Development of Educational Achievement (IDEA). Kame’enui suggested that in the next ten years there will be an “adjudication” of what passes as rigorous evidence in educational research.

George Jesien, Executive Director, Association of University Centers on Disabilities, spoke to the balancing of interests in how science is funded, conducted and disseminated. While acknowledging the energizing nature of advocacy groups who want to push the scientific agenda, for example, Jesian noted that “science has its own process.”

Maddox, touching close to that point, challenged scientific researchers to bring the community in early “as we think about studies,” to build the community’s trust in, value of and response to biomedical research. Maddox listed newborn screening and autism research as top national priorities.

Mabel Rice, Distinguished Professor of Advanced Studies and Director of three of LSI’s 12 centers, quipped that BCR/LSI was clinical and translational “...before we knew what translational was.” Today, she says, LSI scientists are at the “biobehavioral interface” but asserted that there is a desperate need for solid biobehavioral theory.

As a society, we must be prepared for the consequences of our research-to-practice successes, urged U.S. Assistant Surgeon General Dr. José Cordero. Cordero, who directs the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, suggested that research and public health policy should be less focused on “cross-sectional” and more on longitudinal data. People with Downs Syndrome, for example, are now living well into middle age. But with that success has come the emergence of conditions in later life not previously seen in that group.

One of those conditions is an accelerated Alzheimer-like syndrome, said Stephen Fowler, Senior Scientist, Schiefelbusch Institute for Life Span Studies and Professor of Pharmacology and Toxicology, Fowler described how scientists are testing compounds on the molecular level in genes that are associated with mental retardation common to humans and other organisms. One recent study found that, surprisingly, antibiotics had a beneficial effect on a gene that is known to be involved in the protection of neurons. This was confirmed in mouse models. Fowler speculated that this and other such discoveries could be used preventatively in children with Downs syndrome.

In his closing remarks, Steve Warren recalled that 50 years ago, many people - even at KU - scoffed at the ambitions of our founders, “pragmatic prairie optimists” like Dick Schiefelbusch and Joe Spradlin, and again in the dark days of 1980s, when it looked like the Bureau would collapse from radical federal budget cuts. “And yet we are here tonight as a living example of the folly of those predictions,” he said.

Today, the challenges, failures and crises are not over, Warren warned, but suggested that grounding ourselves in our history of persistence that has created solutions to the problems of human and community development, disability and aging will continue to inspire us in the future:

Quoting Helen Keller, Warren asserted, “No pessimist ever discovered the secret of the stars or sailed to an uncharted land, or opened a new heaven to the human spirit.”