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FEATURE

Rising to the Challenge

A Louisiana Children's Museum exhibit takes the "dis" out of disability.

At 11, Adrian Livous may have some growing ahead of him, but he already stands tall on the playground basketball courts in and around his New Orleans neighborhood.

"We stars," he says in the clipped lingo of the streets. He is speaking of himself and his buddy Carl Wagner as the two of them, on a school field trip to the Louisiana Children's Museum, wait in line for a chance to shoot baskets.

This is no ordinary game of hoop. Kids are putting up shots from a wheelchair as they participate in one facet of an exhibit designed to give them a glimpse of the special skills required of peers who have disabilities.

Adrian settles into the seat and jimmies the unfamiliar chair into position for his first shot. He puts a hand on either side of the ball and raises it awkwardly over his head, only to have the chair scoot backward as he thrusts the ball forward. The shot falls way short. In three tries, Adrian manages one basket, which sets off a clanging bell. His buddy Carl does no better.

"We thought this would be a walk in the park," Adrian says.

What stayed with them, both boys say, was the peculiar feeling of weightlessness in their legs as they dangled uselessly over the wheelchair seat -- that and the powerful compensatory demand on their upper body and arms, a demand that kids who are mobility impaired must meet every waking hour.

With that, the two boys bolt off in search of the exhibit's next challenge.

Tucked away in a corner of the second floor, the exhibit, called simply Challenges, is one of numerous participatory experiences offered at the Louisiana Children's Museum, a thriving, constantly evolving magnet for busloads of kids in the heart of New Orleans' revitalized warehouse district. Other exhibits range from the nearly lifesize bridge of a Mississippi River tugboat to scientific displays of static electricity and wave motion.

The simulations woven into the Challenges exhibit are generally subtler experiences, touching on deafness, blindness and disorders of the muscular and nervous systems. Exhibits also address difficulties associated with disease, chronic illness and conditions that require long-term treatment such as dialysis.

One wall of the exhibit is adorned with a sweeping frieze of 26 variously colored human hands, each signing a letter of the alphabet. Kids stare intently at the hands and try to mirror the signs with their own fingers. Across the room is an introduction to another symbol system: Braille. Young visitors pass their hands gingerly over giant dots, the size of halved Ping-Pong balls, embedded into plastic bricks and try to memorize the patterns and the letters they represent.

"See these tiny dots. Here, feel them." A teacher, guiding her class of 3rd graders through the exhibit, has brought along a book in Braille with standard-sized dots. "You can hardly tell one letter from another, but a blind person has fingers so sensitive that these tiny dots feel just as big and clear as these plastic ones."

Thus, visiting children experience disabilities in terms of the adaptive abilities they engender -- genuine skills and achievements worthy of respect and admiration. According to Lola LeBlanc, the museum's education director, each part of the Challenges exhibit is calculated to underscore the skill a person with a disability has mastered rather than the disability itself.

"It's the whole idea of 'What if you couldn't?' expressed in a very positive way," LeBlanc says. What If You Couldn't? was the name of a traveling exhibit on disabilities developed by the Children's Museum in Boston. That exhibit was so successful when it visited the Louisiana Children's Museum about five years ago that the staff knew they wanted to create their own permanent exhibit on living with physical challenges.

The difference in the titles of the two museum exhibits reflects how thinking about people with disabilities has changed over the years, according to Linda McVille, a veteran special education teacher who headed the program committee responsible for Challenges' design. "We have accessibility now that's guaranteed by the ADA [Americans with Disabilities Act], which is something we didn't have before," McVille says, explaining that the law removed a lot of obstacles for people who are differently abled. "The change in focus for people with disabilities is that now you're limited only by what you think you cannot do."

 

Household Help

Another set of challenges, and devices to meet them, awaits kids a few yards further into the exhibit at Maison Loubat, a small house named for the family who built the 19th century brick-and-timber warehouse that was renovated in the mid-1980s to create the museum. Maison Loubat has some of the typical adaptations that allow people with disabilities to achieve greater independence: a wheelchair-accessible sink, a shower with a built-in bench, a one-handed jar opener, a Braille clock and low-slung shelving, as well as other user-friendly features.

Kids blindfold themselves or settle into a wheelchair and play house in Maison Loubat. McVille chuckles as Jason, a little boy who brings more exuberance than science to the task, wings through the structure both blindfolded and in a wheelchair. In real life, Jason's eyes and legs are fine, but as a survivor of fetal alcohol syndrome, he faces challenges of other sorts, says McVille. For most children who visit the exhibit, Challenges is an introduction to ability differences. For Jason, already coming to grips with the severe learning disabilities he faces, the exhibit may help expand his empathy for other challenged youngsters.

Part of the genius of the Challenges exhibit is its simplicity. Many of the experiences -- blindfolding, for example -- can be readily duplicated in a classroom. Another easily borrowed exhibit simulates manual impairment or loss of coordination by having participants slip on industrial rubber gloves, as bulky as they are stiff, and then attempt activities that require fine motor control, such as stacking small blocks. But the breadth of the Challenges message -- the awareness it fosters of the range of human conditions and capabilities -- would be hard to re-create piecemeal.

How kids approach the exhibit, and what they glean from it, varies with their age. Early adolescents can have complex and sophisticated reactions. Adrian Livous could draw on keen intelligence and his knowledge of basketball and anatomy to understand why shooting from a wheelchair presents such a challenge.

"In basketball, usually you jump for extra power," he points out. "Shooting this way [from a wheelchair] is all in the biceps and triceps."

Younger children tend to romp through the exhibit as if it were a playground. They wobble a few steps on crutches before throwing them aside. They reach into a wall of cubbyholes to see if they can identify a series of familiar objects -- a padlocked latch, a screwdriver, a horseshoe -- by touch alone. They ponder a sequence of wall-mounted photographs of a child named Daniel, who has muscular dystrophy. In texts accompanying each picture, Daniel describes the difficulties he faces, such as pulling on his clothes with only one functioning arm, and challenges children to try the same thing themselves sometime.

But even this elementary level of exposure to disability has a way of making special challenges less mysterious, easing the anxiety that can separate children who have disabilities from those who do not.

As a tool for aiding the social integration of children with special needs into "mainstream" environments, the exhibit earns high marks from Mary Banbury, a professor of education at the University of New Orleans. Banbury, whose field is special education, regularly brings classes of preservice teachers to Challenges to show how they might use the exhibit to help clarify children's misconceptions and allay fears about people who have disabilities.

"Kids sometimes fear or make fun of or tease about what they don't understand," says Banbury. "When I was growing up, if you saw somebody who had a disability and you looked and asked a question, the adult with you would say 'Shhhh! Don't look.' And you'd say, 'Why can't I?' But children want to look. They want to ask questions." The exhibit, she says, offers a prime opportunity for young people to voice questions they may have but are afraid to ask and for teachers and parents to help answer them.

 

Familiar Territory

Taking the fear out of the unknown was part of what Challenges' developers intended, according to Dr. John Lewy, chairman of the Department of Pediatrics at Tulane Hospital for Children. Lewy, who helped plan the exhibit, found inspiration for Challenges' design in the hospital's own Child Life area. There, children facing surgery or learning to live with demanding treatment regimens, such as daily insulin injections or colostomies, are given medically and anatomically accurate "buddy dolls" to help them become familiar with the challenge they face.

The prototype was "Kelly Kidney," a doll that can be unzipped to reveal detachable kidneys as a teaching aide for children requiring dialysis. In play therapy, children practice giving the dolls injections with a fake needle. "Now, this won't hurt," Lewy hears children tell their dolls, and it is a reassuring sign that they are internalizing the doctor's role in a way that makes them feel less passive and fearful. That same process of demystification would underlie the Challenges exhibit, Lewy decided.

Museum educators hope that children's increased understanding will breed sensitivity toward peers with special needs. Courtney Giarrusso, a teenager with spina bifida who uses a wheelchair to get around, remembers the deepened sense of empathy that she detected among her classmates after their visit to the exhibit last year. Courtney, whose family had to overcome considerable resistance among New Orleans public school administrators in assuring that she be educated alongside kids in mainstream classrooms, long since broke down many social barriers that might have separated her from her peers. But going through the exhibit moved some of them, even some who knew Courtney well, beyond mere acceptance to the threshold of real understanding.

"They experienced what I experience every day," Courtney says.

A brisk, blindfolded walk through Maison Loubat gave Adrian Livous a new appreciation for the challenges faced by people who are visually impaired.

"You know, this is kind of scary," Adrian says, pulling off his blindfold after tapping his way here and there in the living space. "I'm farsighted. I have an astigmatism, but blind people can't see at all. I couldn't stand but 20 seconds or a minute of it. Blind people have to do this all day, every day. I can't believe they can do it."

On the weekend after Adrian and his classmates romped through the exhibit, a guest speaker at the museum offered further insight into the lives of people who are blind. Kenneth Dupré, who lost his sight in a car crash 16 years ago, spoke to visitors about the important role guide dogs play in the lives of the blind. Kids sat mesmerized as Dupré described how his black Lab, Loki, helps him navigate city streets by reading traffic and spotting curbs and crosswalks.

After his presentation, Dupré asked education director Lola LeBlanc to escort him through the exhibit. His presence had a way of turning Challenges into a photo-negative of the usual visitor's experience. LeBlanc had to steer the young man's hands into cubbyholes readily apparent to a sighted person, whereupon Dupré identified the unseen objects with a tactile dexterity every bit as sharp as his former 20-20 vision.

As he turned to leave, Dupré unwittingly entered into a two-person tableau that seemed to capture the essence of the Challenges exhibit: The blind man and his dog passed close by the tapping white cane of a blindfolded youngster. Oblivious to Dupré's presence, the girl took her first tentative steps into a world in which the full spectrum of human abilities are respected and appreciated.