By Alexia Elejalde-Ruiz, Tribune Newspapers
8:16 PM EDT, June 12, 2013
In the seven years since a motorcycle accident left him paralyzed from the neck down, Ben Trockman has stopped paying attention to stares from strangers, or at least he's stopped being bothered by them.
"I tell people they're staring because of how tremendously good-looking I am," said Trockman, 24, who is studying public relations at the University of Southern Indiana in Evansville, Ind.
Though he's learned to use humor to handle all manner of awkward encounters, Trockman wishes people would put their nervous attention to better use. They could say hello. Or strike up a conversation about baseball. He welcomes questions about life in his power wheelchair, or how he ended up there.
"I would so much rather someone say, 'What happened to you?' than stare from a distance and then walk away," Trockman said. "It makes me feel better, it makes them feel better and that person will learn a little that day."
Though people with disabilities have become increasingly integrated into mainstream society, thanks to disability legislation and technological advances that have made it possible to flourish in an able-bodied world, they continue to be stared at by uncomfortable strangers — even some relatives and friends — who don't know how to behave around people who may look, walk, talk, think, see, hear or get around differently from the norm.
At the heart of the problem is that "people don't acknowledge the person first; they acknowledge the disability," Michael Carmody said. He co-founded the nonprofit Opportunity Knocks in the Chicago suburb of Oak Park to provide after-school programs for young adults with developmental disabilities — from flag football to leadership projects — to chip away at the wall of misconceptions that separates people with disabilities from a mainstream that assumes them incapable of doing things.
Carmody, whose youngest brother John, 26, has Down syndrome, welcomes every ignorant encounter — be it baby-talking or discussing John as though he weren't standing right there — as an opportunity to demonstrate, by example, how one should behave around people with disabilities, which is quite simple.
"Treat them like you would treat yourself," Carmody said.
Patricia Wright, national director of autism services at Easter Seals, which provides services to children and adults with disabilities and special needs, said respectfully addressing people with disabilities as competent beings is paramount to the well-being of both the individuals and society.
"If we instantly think, 'I can't interact with this person,' that eliminates them from the community," she said.
But well-intentioned people can also misstep.
During a family portrait session a decade ago, Jessica Herrera was pleased to see the photographer establish a friendly rapport with her younger brother, Robbie, who has cerebral palsy, then was jarred when he turned to ask her, "How long has he been like this?'"
"I just saw the energy and joy empty from (Robbie's) body," Herrera said. "It was that contrast between, this person sees me and gets my humor, to being reduced to someone who just has a disability."
Herrera, a speech pathologist who lives in Seattle, said there should always be a presumption of competence, and everyone should be given the chance to answer for themselves. She also urges patience and compassion for "hidden disabilities," such as autism or mental disorders, that are not always outwardly obvious. It's easy to judge a child throwing a tantrum and blame shoddy parenting, "but you can't really know for sure what that person might be dealing with," she said.
Perhaps the most common reaction people have when confronted with disability is to stare, which in itself is not offensive.
Staring is a neurologically and physiologically driven response to the human craving for novelty, as natural as eating and sex, said Rosemarie Garland-Thomson, professor of English and women's studies at Emory University in Atlanta and author of "Staring: How We Look."
But there is a difference between a look of respectful recognition or interest, which can be communicated with as subtle a gesture as a smile, and a stare that is unwanted or invasive, Garland-Thomson said.
Often people who are stared at will lead staring to a productive conclusion.
"They learn to shut down the stare, like staring back directly or saying something or turning in the other direction, or they might use it to strike up a conversation," Garland-Thomson said. "To be attentive to that interaction is the most respectful thing to do."
Garland-Thomson has spent her "whole life being stared at" because she has a foreshortened arm, and she aims to convey that "we don't understand ourselves to be victims of starers."
Kathleen Houghton, whose younger sister has severe cerebral palsy, said that over the decades she has gotten good at telling the difference between stares.
"Sometimes they're just curious," said Houghton, who lives in Somerville, Mass., and is co-guardian of Mary, 49. "Other times it's patronizing, a sad smile, 'Oh you poor thing.' Other times people look stunned — they don't know what to do or how to act."
The pitying glances are the most bothersome, Houghton said, as are the times well-meaning people talk about Mary as though she's a toddler or not there at all: Would she like a drink? How is Mary doing? (I don't know, ask her, Houghton responds.) Mary cognitively understands everything, Houghton said, and she is aware when she's being stared at.
The solution is not to look away. Houghton said she welcomes questions about Mary and is thrilled when people offer help carrying a grocery bag or other tasks that can be cumbersome with a wheelchair — though not when they insist. She happily engages kids who point and gawk, despite their mortified parents, because it's an opportunity to introduce them to Mary.
The most uplifting moments are when people approach Mary in a friendly, social way.
"There are a lot of times when she can get kind of ignored or not noticed, so it's really nice when people talk directly to her and include her," said Houghton, who runs recreational programs for special needs students.
Trockman, the college student in a power wheelchair, said a major thing people often forget is that he's interested in the same things as they are.
"I love football; I love baseball. I go to dinner and to the movies," Trockman said. "We want to be included in anything as much as anyone else."
When people try to shake his hand and realize he can't, he'd prefer a pat on the hand or a fist bump than a flustered retreat.
If anything bothers him, it is when people talk to him through his companions as though he can't speak for himself, or when they express sadness at his condition.
"I love my life every day," Trockman said. "I do not wake up in the morning thinking about the limitations of my life as a person with a disability. I think about the things I'm going to get done that day. There's still life, and there's so much left to do."
Feeling awkward about interactions?
The Tennessee Disability Coalition offers some tips on disability etiquette:
Speak directly to the person with the disability, not just the people with him or her.
Don't patronize, talk down or lavish praise for having the "courage" to overcome a disability.
Be patient and give your undivided attention, especially with someone who speaks slowly or with great effort. Don't try to finish their sentences.
Avoid mentioning the person's disability unless he or she talks about it or it is relevant to the conversation.
Offer assistance, and wait for it to be accepted before assisting. If you are declined, don't insist.
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