Contact: Ranjit Arab, University Relations, (785) 864-8855.
LAWRENCE--It seems like an obvious concept: research on families of children with disabilities should include plenty of input from the families themselves.
Unfortunately, that often is not the case.
However, a symposium sponsored by the University of Kansas Beach Center on Families and Disabilities hopes to change all of that. The first Maria Eloisa Garcia Etchegoyhen de Lorenzo Family Quality of Life Symposium, to be held July 31 to August 1 in Seattle, will present a novel way of conducting such research, by pairing up each researcher with the parent of a child with a disability.
"Researchers often have the best of intentions," says Ann Turnbull, professor of special education at KU and co-director of the Beach Center. "The questions they ask may be interesting to other researchers. However, that information may not be important to the families on a day-to-day basis. And, after all, who knows more about the family quality of life than the families who live it."
To help special education researchers better understand the challenges these families face, each parent-researcher team has prepared a chapter on family quality of life that they will present at the symposium. The chapters will be published as one book after the symposium.
Turnbull, one of seven KU Beach Center delegates coordinating and participating in the symposium, says that not only does special education research frequently overlook the input of families, it also tends to focus on the negative aspects associated with raising a child with a disability, such as depression and stress - what she calls "the pathology of families."
"Research has traditionally focused more on the breakdown of families, rather than what makes them resilient and gives them a sense of empowerment," Turnbull says.
She, of all people, should know what makes such families succeed. She and her husband H.R. "Rud" Turnbull, also is a professor of special education at KU and co-director of the Beach Center, have a combined six academic degrees and more than 50 years of research experience in the field. More importantly, perhaps, they also have a 33-year-old son, J.T., who has autism, mental retardation and a bipolar disorder.
"We always say that J.T. is our best professor, but he always gives us the final exam before we've had the course," she says.
Another researcher from the KU Beach Center who understands the challenges that researchers and parents of a child with a disability face is Denise Poston. Poston, a doctoral student in special education at KU, will deliver a presentation at the symposium that draws heavily from her personal experiences as a single mother raising two sons - one of whom is a 13-year-old with autism. She uses her presentation to recount the difficulties her family recently faced in finding the proper health care for her son when they moved to a new town.
"I draw a lot on my own experience with my own family," Poston says. "But we'll also be drawing on the research we've done with families from three different parts of the country."
The Beach Center symposium is named in honor of Maria Eloisa Garcia Etchegoyhen de Lorenzo, a native of Uruguay and a former associate honorary researcher at KU. She is widely respected throughout the world as a champion of people with disabilities. And, she will receive a posthumous citation from the president of Uruguay, Dr. Jorge Battle, at the symposium.
The Beach Center has chosen to hold its symposium next week in Seattle so it will coincide with the 11th World Congress, sponsored by the International Association for the Scientific Study of Intellectual Disabilities. The congress is one of the largest gatherings of international special education researchers, with more than 30 countries represented at the weeklong event.
Turnbull says she and her husband also will help their son, J.T., deliver his own presentation at another conference to be held during the same time. J.T., who holds a clerical position at the Beach Center and lives in his own home, will describe a week in his life at the First International Conference on Self-Determination, Freedom & Citizenship and Individualized Funding.
"He is thrilled," Turnbull says of her son's participation in the self-determination conference. "For the last six months, it's all he's been talking about. He has so much energy and excitement because he will get to share his life with other people and be in a leadership role."