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.