Yale Bulletin and Calendar

April 23, 2004|Volume 32, Number 27

Panel: Respect is key to proper
treatment of those with disabilities

Sometimes when Yale faculty member Glenn Weston-Murphy is maneuvering his wheelchair up an incline, an operation he describes as "delicate as walking a tight rope," a good-hearted individual will come up from behind and -- without asking -- start pushing.

The manually operated wheelchair is "deliberately designed to be unstable in order to give it greater flexibility" so this sudden acceleration from behind can actually "propel me onto the ground," noted Weston-Murphy, engineering design adviser and lecturer in mechanical engineering.

For people with disabilities, most of whom have already devised strategies for navigating the wider world, unasked-for help can sometimes be a hindrance, agreed the participants on a panel on "Disabilities Etiquette" held on April 14 in the lecture hall of the Sterling Memorial Library. The discussion was part of a two-day forum and informational fair titled "Open Doors: The Diverse Paths of Disabilities." (See related story.)

The panelists talked about their lives as individuals with disabilities and their interactions with others -- both the well-intentioned and the less-than-enlightened -- and offered guidelines on how they'd prefer to be treated.

Molly Lubin '06 of Morse College, who has a hearing impairment, said most people don't realize she has a disability right away unless they notice her hearing aid.

Although the device picks up most of the sounds around her, it is less accurate in conveying the complexities of speech, and Lubin relies on lip-reading to follow most conversations. Because it requires such concentration, lip-reading can be tiring work, said the sophomore, so she asks the professors in her classes to wear a small microphone that links directly to her hearing aid.

"Then I don't have to stare all the time, and I can take notes," she explained. While most of her instructors have been happy to oblige, said the sophomore, "some have said, 'But you can hear me fine now' or 'Can't you just sit in the front row?'"

Often when people do discover her disability, "they speak really loudly and slowly, until they begin to sound ridiculous, even to me. They have the best of intentions, but what they're really doing is calling attention to my disability," said Lubin, expressing her desire that people "treat me like a normal person, which essentially I am."

For Nico Lang, a student at the School of Drama and a little person, her short stature is "the first thing people notice" about her, even before they notice that she's female.

As she goes through her daily life, Lang often finds her travels delayed by individuals who mistake her for someone much younger. When she tries to cross the street, "people will put their hands on me, thinking I'm a child, and that they're saving me from walking out into traffic. They'll grab me by the back of my coat and physically move me back," said Lang. Then, for the next 15 minutes, "they end up apologizing to me, and I end up apologizing to them." When Lang was young, her parents made no radical changes to their home to accommodate her disability -- a decision that helped her prepare to cope with the outside world, she said. When she was accepted at the School of Drama, she was contacted by the University's Resource Office on Disabilities to see if she had any special needs, she recalled. "I told them, 'Just give me a stepstool for the light in the bathroom, and I'm good to go.'"

Laura Micklus, on the other hand, always has a faithful helper at her side -- a golden retriever named "John," one of an increasing number of "service animals" that are making the day-to-day lives of individuals with disabilities a little easier. While guide dogs for the visually impaired have been in existence for a long time, there are now also seizure alert dogs for people with epilepsy and dogs that alert their hearing-impaired owners to important sounds, such as the doorbell or telephone -- as well as "new-fangled service animals" such as service monkeys and service ponies, explained Micklus, who works for the Disability Resource Center of Fairfield County.

Micklus, who uses a scooter, said John helps her in myriad ways: He picks up things she drops, brings her the phone, alerts her neighbors if she's in trouble and even helps her make transactions at the bank by standing with his forepaws on the high counter and a check in his mouth. One time after John did this, Micklus recalled, "There were suddenly five security guards around us. They thought I was going to rob the bank."

People often want to pet John, who -- like his peers in service -- is a "highly trained animal that functions on praise," said Micklus, cautioning: "Always ask first."

Improving the lives of people with disabilities by removing the architectural barriers that prevent them from accessing buildings is the mission of Cheryl Killam, accessibility specialist for the New Hampshire Governor's Commission on Disability.

A large part of the job is education, said Killam. Sometimes she gets calls from business owners and contractors who say they want to make accommodations for individuals with disabilities, but don't have much money. Killam often tells them that she'll come out to visit their site without mentioning that she herself uses a wheelchair. "I don't tell them what they're going to get when I get there," she said.

Some of these individuals will demur that "we don't get many people with disabilities coming in here," notes Killam, "and I say, 'I wonder why.'" People need to understand that any architectural feature that is more than one inch high "is a barrier" and that any bathroom that doesn't have a 60-inch turning radius is inaccessible to people in wheelchairs, she added.

"People with disabilities have to do things in a different way," she noted, pointing out that even for a simple visit, they need to consider whether they will be able to find nearby parking, get inside the building or through the doorways inside, or even be able to use the bathroom.

She works with architects and contractors to encourage them to incorporate such considerations into their plans, but recounted one frustrating incident when a builder balked at the cost of putting taller-than-normal toilets in apartments that were going to be used primarily by seniors, many of whom would have stability or mobility issues. He eventually opted to use standard-sized toilets, said Killam, who predicted that many of those eventually will have to be replaced -- at a greater cost.

"People still don't get it, and I don't know when they will," said Killam. "But when they do, I'll be out of a job."

Lawyer Michelle Duprey, director of New Haven's Department of Services for Persons with Disabilities, discussed some of the mistakes that able-bodied people make when dealing with those with disabilities.

Duprey, who is of short stature and uses a wheelchair, said that people need to realize that "your chair is your personal space." She noted that some people lean on her chair while waiting in line, or stand and talk over her head, leaving her unable to move.

While grocery shopping, Duprey is often stopped several times in each aisle by people who want to help her get things off the shelves. "Some people get offended if you say you don't need their help," she said.

Children will often stare and point or ask Duprey what's wrong with her, she said, but that doesn't bother her as much as the reaction of the parents who slap their hands over their child's mouth or drag the youngster away, whispering: "She's sick."

Parents, advised Duprey, should instead follow the lead of one mother who told her child: "Remember I told you that everybody is different on the outside, but the same on the inside? Well, she's different from you on the outside, but the same on the inside."

More problematic, said Duprey, are the adults who have come up and patted her on the head, or said, "You poor thing."

"People suppose that because you have a disability, your life is full of misery," said Duprey. "They need to understand that you're a person first and disabled second. ...

"The question I struggle with on a daily basis is: Do you correct people or just let it go?" she noted. "Should you let people keep making the same mistakes over and over?"

In summing up the feelings of the panelists at the conclusion of the discussion, Weston-Murphy offered these words of advice: "What we're really looking for, what we really want, is to be treated with dignity and not made a special case because we're different from you. Don't try to put us in a box or a room or a cage.

"Look, listen and observe, and most of your questions will be answered. Ask before you do something. Think before you leap. Ask if in doubt. Treat everyone as an individual, with respect."

-- By LuAnn Bishop

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