Director's Message: Reframing the Paradigm

Updated on 8/8/2011 9:47:15 AM.

by Elisabeth Dykens, Ph.D., Annette Schaffer Eskind Chair and Director, Vanderbilt Kennedy Center; Co-Director, Vanderbilt Kennedy Center for Excellence in Developmental Disabilities; Professor of Psychology & Human Development, Psychiatry, and Pediatrics

Imagine the thrill of seeing Special Olympian runners at the World Summer Games dressed in blue and white passing the “Flame of Hope” up the Acropolis hillside in Athens to reach the Parthenon. The Special Olympics global movement offers hope that persons with intellectual disabilities will be accepted and valued and have opportunities “to excel without barriers.” I attended the 2011 Special Olympics World Summer Games as a new Board member. From opening to closing, from competitions to Healthy Athlete screenings, the experience was extraordinary.

The World Games gathered not only athletes but researchers worldwide who over 3 days of meetings shared challenges and opportunities in cross-cultural research. My own challenge to our research community is to “reframe our paradigms.”

First, let’s focus on families, to move from documenting their stress and ill health to giving them tools that will empower them to cope and grow as healthy adults. If parent stress has not diminished in the 40 or more years of developing and providing interventions for children and adults with disabilities, isn’t it time to rethink intervention models?

Respite care (which is difficult to come by) provides needed breaks but no new skills. Parent-to-parent groups and information, tips, and advocacy are necessary but not sufficient. Parents often become in-home therapists, increasing their stress. We need to flip the target of intervention and provide parental tools for stress reduction and positive adult development.

Second, let’s shift the focus from the negative attributes of disabilities to a balanced view that gives equal research attention to the positive. Our field has long studied cognitive and adaptive deficits, maladaptive behaviors, poor social outcomes, and psychiatric disorders. More recently, our field has examined the genetic and neurobiological factors that underpin deficits. Disability professionals provide services that individuals with disabilities “consume.”

Individuals with disabilities are not only “consumers” or “receivers”—they are “givers.” We should expect reciprocity. Let’s learn from the field of positive psychology and look for ways to enhance and promote engagement, happiness, and well-being. Let’s examine strengths and positive internal states, and search with equal determination for the genetic and neurobiological factors underlying positive traits. Let’s develop models of appreciating the “whole person,” with a balanced view of individual strengths and weaknesses—abilities as well as disabilities.

Doing this will require us, as researchers, clinicians, and disability professionals, to move outside our comfort zones and to embrace complexities that come from a broader appreciation of people with intellectual/developmental disabilities. Let us see how these individuals enrich, contribute, engage, teach, and give back.

Third, as researchers, let’s be resolved to count all individuals with intellectual disabilities worldwide, to collect meaningful data, and to stop excluding them from our scientific agendas. Research registries are more than a convenience for researchers. They have the potential to empower persons with intellectual/developmental disabilities and their families to dramatically change the current state of affairs.

An IQ of less than 70 is an exclusionary criterion for most research and intervention proposals. This represents lost opportunities for discovery. Even in autism research, 90% of publications in a leading autism journal were on children or adults with IQs above 90.

The Special Olympics motto is “I’m In.” Let’s create a new motto: “We Are In.” Let individuals with intellectual/developmental disabilities and their families be in, collaborating on their inclusion in research and discovery and helping to set and direct our research agendas.

Let’s put our advances in neurobiological interventions into a broader living context so that we develop interventions that improve quality of life. Let’s move from individual research labs with small numbers to an international movement for research inclusion and discoveries that make positives differences in the lives of people with intellectual/developmental disabilities and their families.