“I had no help at all from the medical center where I was treated, in how to manage questions and stares and how to meet new people. How to start a conversation.”
Sociologists have analyzed what happens when a person with a facial deformity or other disfigurement goes out. People around them stare, do double takes, or exhibit what are called “startle reactions.”
In response, burn survivors often retreat from public or hide their scars behind clothing or hats.
“We all stare, I mean it is human nature to look; however, we do not want social death to happen to burn survivors, because they’re afraid to go out and have people stare or ask so many questions.”
Instead of ignoring the stares, Quayle uses cheerful confrontation.
speaker, Barbara Quayle
“You look ‘em in the eye and you smile at them. Somehow there’s a barrier broken and they see you as a person, not an object.”
Quayle spoke recently in Galveston, at the annual convention of the Phoenix Society for Burn Survivors. Galveston is home to two well-regarded burn treatment centers.
“I’m there. I’m so ready to improve the whole process.”
Wendy Albrecht was attending her first convention. She’s an artist from California, still recovering from a burn injury that happened a year ago.
“I want to wear clothes that reveal and I don’t always want the stares.”
One big problem for burn survivors is that complete strangers will often come up to them and ask personal or intrusive questions. Quayle teaches them to rehearse a prepared response.
“So it’s three sentences: ‘I was in a house fire. I was in a car crash. You know, back out in life again, getting back to life. Thanks for asking.’ Three sentences. Fini! You do not owe everybody the five-dollar answer.”
This advice came as a relief to Albrecht. She’s still learning how to handle people’s reactions.
“Burn survivors now are living. 20 to 30 years ago, if you were burned, you died, because of complications, infection, whatever. So people are seeing what we look like now and if we can get more people to be more comfortable with what we look like. It’s gonna not only help them, but also help us.”
Barbara Quayle is collaborating with the American Burn Association to teach her coping skills in burn centers across the country. She wants all patients to leave the hospital better prepared to deal with the stares, whispers and questions about their appearance.
From the KUHF Health Science and Technology Desk, I’m Carrie Feibel.
"Burn Survivors Fight Social Isolation" first aired November 9, 2010.