March 25, 2011
By C.J. Janovy
|KU Medical Center professor Michael Fox in New Orleans' Lower 9th Ward.|
A team of researchers from the University of Kansas Medical Center and the University of Kansas are receiving an award this week for a paper they published after studying the psychosocial impact of Hurricane Katrina on people with disabilities.
Michael Fox, ScD, a professor in the University of Kansas Medical Center's department of Health Policy and Management, and Glen White, PhD, a professor of Applied Behavior Science at the University of Kansas, have been working together since 2001 at the Research and Training Center on Independent Living at the Life Span Institute on the Lawrence campus. At the Life Span Institute, they have studied factors that put people with disabilities at risk and ways to help people with disabilities participate more fully in society. A particular focus of their research is disability and emergency preparedness.
Their work intensified after 9/11, when they heard stories about the heroic measures that people fleeing the Twin Towers had taken to help people with disabilities evacuate. With funding from the U.S. Centers for Disease Control and Prevention, Fox and White finished a project called Nobody Left Behind, which included including a national survey of how well county emergency managers were prepared to handle the needs of people who had difficulty walking, seeing or hearing, or who had other functional limitations, in emergencies.
"Not unexpectedly, the survey indicated that county health departments were aware of the issue but didn't know what to do," Fox says. "Many felt that modifications and training, especially training fire departments, would be cost-prohibitive."
Studying the Gulf Coast
|KU professor Glen White in New Orleans' Lower 9th Ward.|
This work uniquely prepared them to explore the impact of Katrina on people with disabilities. Among its heartbreakingly iconic images: the abandoned, anonymous body of a woman in a wheelchair, covered with a poncho (we now know her name was Ethel Freeman).
Fox and White received more grant funding for their research. Because the Department of Education funds independent living centers - transitional support centers that help people with disabilities with issues such as housing, retraining, self-help and advocacy - Fox and White, along with their colleagues Catherine Rooney, MA, from KU's Research and Training Center on Independent Living, and Anthony Cahill, PhD, from the Center for Development and Disability at the University of New Mexico, conducted interviews at six such centers in Louisiana, Alabama, Mississippi and Florida.
"We came down about five months after this happened," White says. "I thought we were way late in the process, that people would have moved on. But at the point we came, they were really ready to talk. They wanted to tell their story."
Fox remembers wandering through New Orleans' Lower 9th Ward. "There was nobody there. The homes were empty. We came across a couple of homes that had ramps, and we saw a wheelchair that was in a living room three feet under the watermark. We were able to track down the person who lived there, and she was included as one of the individuals we spoke with."
They interviewed 56 people, ending up with 140 pages of transcripts - and some consistent themes.
Not surprisingly, interviewees were incredulous - they didn't believe that what had happened could actually have taken place. They had a tendency to blame others (such as New Orleans city officials) for what they had experienced. They framed what they lived through in terms of faith. Interaction with families, close or extended, played a crucial role in how well they made it through the disaster. Also important was a sense of professional responsibility - i.e., making it to work after the storm.
What the researchers didn't expect was the level of adaptation and resiliency they discovered.
"Numerous stories combined elements of heroism, luck and endurance with a consistently optimistic variation of moving forward to transcend the incredible difficulties each individual faced," Fox and his co-authors later wrote.
One such story involved a person stuck on a highway without any water:
As a quadriplegic, I don't sweat like normal people and my temperature gauge was broken so I get overheated.... If somebody that I knew from the fire department had not been volunteering to help out, I probably would have died that day from heat stroke....They iced me up and sent me back to my friends and family. So, I got sick then and terribly ill with the infection that I got because of the wheelchair and having to live with it I wound up with what's called a void, where the bone rubs on the muscle tissue and the muscle tissue doesn't spring back like normal people and it gets infected and then the infection tries to eat its way out of the body and you wind up with these huge wounds that take a lot longer than the average to heal up after surgery. I'm going to finally get my skin flap this March the 30th and I'll get out of bed and be released, to go back and try to find a home probably in the middle of May.
Fox attributes that resiliency partly to the unique ways in which people with disabilities must continually adapt in day-to-day situations.
The KU researchers published their findings last year in the journal Rehabilitation Psychology. On March 25 of this year, their paper, "The Psychosocial Impact of Hurricane Katrina on Persons with Disabilities and Independent Living Center Staff Living on the American Gulf Coast," received a first-place award by the American Rehabilitation and Counseling Association at its annual convention.
Fittingly, the convention was in New Orleans.
Revisiting New Orleans
White traveled there to accept the award on behalf of his colleagues, and had plans to visit the woman whose wheelchair they discovered in the empty house. He calls her Miss Helen.
"She's probably 76, 77 now. She was trapped in her attic for three days." Her house has been restored. "I called her the other night and she's hanging in there," White says.
As the researchers note, 19 percent of the U.S. population - approximately 50 million people - self-reports a disability. More than nine million have a sensory disability involving sight or hearing; 21.2 million have a condition that limits walking, climbing stairs, reaching, lifting, or carrying objects; 14.3 million have a cognitive disability, and 18.2 million people over the age of 16 have a condition that makes it difficult to go outside the home.
White says he hopes their research will sensitize other investigators or people who work with disaster survivors. "We hope it will provide a foundation for advanced discovery about what we can do to help people cope when they run into these circumstances that are beyond their control."