This excerpt is from an article titled #WithNotFor: The Importance of Inclusivity in Research originally posted on The Samuel Centre for Social Connectedness website.
Ben Haack is an accomplished Special Olympics athlete and the Athlete Representative on the Special Olympics International Board of Directors. Despite his outstanding achievements, Ben’s story has not always been one of triumph. As a person with an intellectual and developmental disability (IDD), Ben faced relentless bullying and harassment throughout his school years. He recognizes that people with IDD are “fundamentally undervalued by society.” Today, Ben is outspoken on the lack of inclusive research on IDD. He emphasizes that one of the biggest challenges for Special Olympics in developing effective support programs for individuals with IDD and their families is that there is “extraordinarily little inclusive research on individuals with IDD.” He highlights that the little research that is conducted on IDD typically only includes the perspectives of people without IDD, like parents, teachers, or medical experts. Although these perspectives do have value, the perspectives of the population being studied are notably missing.