The soft-spoken burn nurse from Indiana was about to tell her audience, World Burn Congress convention-goers who had lost fingers and skin and friends, a hard truth about life after fire.
She was not going to mention the skin grafts or plastic surgery or the disfigurement. She placed a sheet of paper on her overhead projector, letting the words sink in before she spoke them.
"When People Stare."
"No one," she told them, "is ready for the staring they are going to receive in the community."
"You need to know, people are going to stare."
The audience at this workshop at an annual convention for burn survivors in Cleveland 10 days ago included those wounded from the Rhode Island nightclub fire in February. They had just entered into a conversation as deeply etched into the burn community as the scars -- the staring, gaping, and gawking by the public. And then, the embarrassed looking away, the avoidance of eye contact, when eyes do meet. Don't look away, the survivors say.
Robert Feeney, 31, is a lawn-care specialist who lives in Plymouth, Mass. He was in Cleveland looking for strength that he could take home, where people have stared at him. This was especially true in the first two months after The Station fire, when the burns on his face were blood-red, and his singed hair had not come back.
One day he was leaving his doctor's office and found himself walking toward a woman, who eyeballed him like a possum frozen in a car's headlights.
"Her eyes were focused on me from like 30 feet away," he recalled, in a phone interview after the World Burn Congress. "I'm staring at her, and she's staring straight at me. She was just staring at me. I don't know what she was thinking."
Feeney said his mother muttered a comment that snapped the woman out of her gaze. She quickly looked away -- probably feeling embarrassed, though according to experts, she should have offered a kind look, or a quick comment such as, "I wish you well in your recovery."
The incident stung, and it awakened insecurities Feeney knew as a boy, when a German shepherd attacked him and gave him facial scars he lived with until he was 12 or 13, and underwent plastic surgery.
Although experts say people stare out of curiosity or compassion, rarely cruelty, the woman staring at Feeney outside his doctor's office might well have been one of those schoolchildren who used to call him "dog face," or ask him to snarl for some cheap thrill.
So as he walked by her, he leaned in and widened his eyes. He didn't speak, but he put his burned head near her face, as if to say: Here it is, take one last look.
That encounter made him want to stay home and avoid people, when isolation wasn't what he needed, especially after his fiancée, Donna Mitchell, died in The Station fire.
At the Cleveland burn congress, which was sponsored by the Phoenix Society of Burn Survivors, a Grand Rapids-based peer support organization, Feeney saw people injured much worse than him. He came to admire them, partly for the way they had come to terms with the staring that constantly reminded them that they looked different.
There were people like Don Miller, an affable man of 50, who one day mingled about the conference wearing shorts, a T-shirt, and a Smokey Bear baseball cap.
Don and his wife, Joelle Miller, had traveled to Cleveland from Brodhead, Wis., where Don has had the same friends since childhood, and is known for the elaborate model-train layout in his backyard. At General Motors, he's a paint specialist. Everyone at home is used to his face, which was severely burned when he was 3 and a lantern caught fire in a tent in his family's backyard as he and his brother played cowboys and Indians.
Miller is so warm that his personality is all you notice after meeting him. Not so for strangers.
The Millers noticed while walking around Cleveland that passerby fixated on Don. He was surprised. The burn convention was in town, after all. Didn't people know? Didn't the city have a good-sized burn center?
"Don commented on it last night," Joelle Miller said. "He has gotten more stares in the last two days than he has in a long time. People don't seem to really know what to do with him."
"It doesn't bother me but I do notice it," Don said.
"Maybe it does bother me a little bit," he added. "But what are you going to do?"
He chuckled, saying that growing up, one of his brothers used an old saying for people who stared at Don -- "Just take a picture, it'll last longer."
Lots of people get stares. Just ask any celebrity, said Leonard Cassuto, an associate professor of English at Fordham University. He has taught and published in the field of disability studies.
Yet a celebrity walking down the street feels people looking up to him. A person with burns senses pity or being looked as an "other," he said.
Cassuto believes that people stare partly because when they see a person with a disability, they are reminded of the ephemeral nature of their own life.
"To see a burn victim is to be reminded in the most radical way how fragile your physical self is and how scary that fragility can be," he said.
Others describe staring as hard-wired behavior, a reflex.
Frank McGonagle, a member of the board of trustees of the national Phoenix Society, was burned in a car explosion in 1966. Of the staring that followed, he said, "I was ready to knock people's blocks off."
He said people have an almost uncontrollable compulsion to look at those who appear different.
"Maybe they are funny looking themselves, but they are part of the herd," McGonagle said, "then they round the corner at Wal-Mart and see someone burned, and it's . . . whoa, wait a minute. It doesn't conform to our expectations of what someone is supposed to look like."
Rosemarie Garland-Thomson, a researcher at Emory University in Atlanta, is writing a book on staring.
Garland-Thomson, who was born with one of her arms short and misshaped, calls staring a social compulsion, one born out of a society where seeing is more of a form of knowing than anything else. "We don't even listen to each other as much as we see each other," she said.
Also, she said, until measures such as the Americans with Disabilities Act, the disabled were kept out of the public realm. People are still unaccustomed to seeing different kinds of bodies in public.
"Basically," she said, "the disabled body is the unexpected body."
But Garland-Thomson, and some burn survivors, say there is an opportunity for something positive to happen in a stare, if one side breaks the stare with a smile or eye contact or conversation.
Researchers say injecting a little humanity into an otherwise awkward encounter can make a magical thing happen -- the scars and deformities fade into the background. ("Spend a day with Christopher Reeve, and by the end of the day, he is just Christopher Reeve," said Cassuto, from Fordham University.)
And many of the survivors interviewed at the World Burn Congress said they would rather someone ask about their burns than just stare at them. "If you really care and you really want to know just say, 'Hey, do you mind if I ask what happened to you?' " said Robert Feeney, the Station nightclub survivor.
The best rule, said Barbara Kammerer Quayle, an image expert for burn survivors, from the University of California Irvine Medical Center, is to look but don't stare.
"If you stare," she said, "and you do meet eyes, give a person a big, bright smile and a hello."
