Easter Seal Symbol : Poster Child Quest: Cute Isn’t Enough

CHICAGO —  Susie Wilcox’s left arm flew up to protect her face, her right fist punched the air straight ahead and she cried out: “KEEEEEE YA!”

The 10-year-old stared down her imaginary adversary in the restaurant in rural Connecticut. Then she pulled up her sleeve and cocked her arm to show off a tiny bulge of a biceps.

Sandi Gordon Perkins was impressed.

That takes some doing, given the spelling bees, piano recitals and art exhibitions that are put on for Perkins as she travels the country in search of one child who will be the most-traveled, most-photographed and most-interviewed youngster outside of Hollywood in 1987.

What Perkins really wants is “a regular, delightful kid,” 6 to 12 years old, who has another, far more elusive talent--the ability to be happy and whole despite a physical disability.

That’s the special talent of the National Easter Seal Poster Child.

40-Year-Old Promotion

Every year for 40 years, the National Easter Seal Society, based in Chicago, has chosen one child to be featured on the seals it sends to contributors each winter, to meet with the President, to pose with executives whose corporations are the society’s largest benefactors, to appear on its annual fund-raising telethon and to jet around the country--expenses paid--being seen and listened to by millions of Americans.

The 1986 poster child, Jamie Brazzell, an 8-year-old quadriplegic from rural Kentucky, has already logged tens of thousands of air miles. He has visited the White House, Las Vegas and Puerto Rico. He has sung a song with his mother on nationwide television, has met Hollywood stars and has addressed real estate conventions and truck drivers.

Where he cannot go, his picture stands in. The tow-headed youngster’s image has appeared roughly 70 million times, on everything from the Easter Seal seals to Crayola crayons posters to Safeway delivery trucks. And his reign is only half over.

Child Chosen for 1987

Meanwhile, the search for Jamie’s successor has already ended. It was down to four children in February, when Perkins, director of communications for the Easter Seal Society, began her round of personal interviews at the finalists’ homes. Susie Wilcox, paralyzed from the armpits down, lives in Connecticut. Brian Carr lives in New Hampshire. Sierra Prine lives in Northern California’s Humboldt County and Olivia Campbell’s home is in Alabama.

Each child has been disabled since birth. Three are paralyzed and one has a brittle-bone disease. Each uses a wheelchair or braces to get around. Each goes to a public school with able-bodied children. And each child, like Susie the karate aficionado, has found ways to do things that other people thought impossible.

Choosing the perfect poster child has its own set of rules. Fashions in this business, as in most businesses, have changed. Cute children who pull heart strings--and purse strings--are out. Articulate, self-sufficient youngsters are in.

“I refuse to have heart-tugging cute,” Perkins said. “The national child doesn’t have to be gorgeous, as long as they look OK.”

But the competition does have some of the earmarks of a beauty pageant: stage mothers trying to boost their youngsters to fame and fortune, children trying too hard to impress, and local Easter Seal officials going to great lengths to promote their nominees.

One chapter last year arranged for Perkins to be flown in on a sponsor’s corporate airplane, gave her a party featuring fine California wine--and followed up with an angry letter when the chapter’s candidate was not selected. (“Adorable, but not verbal enough,” was the official decision.)

Unlike Miss America, however, the poster child is chosen by a one-judge panel--Sandi Perkins, a 41-year-old mother of three who has worked in the field of disability rights most of her professional life. She also is the poster child’s frequent chaperon during the yearlong adventure, which begins in November at the annual Easter Seal convention.

Application Runs 5 Pages

The process of selecting the 1987 winner began in January, when nominations from across the country arrived at the national office in Chicago. The five-page application, which is filled out by the local Easter Seal director, requires, among other things, detailed descriptions of the child’s medical history and therapy, “response to strangers” and “response to publicity experiences.”

Although the application is intended to be an objective source of information, the local official doing the nominating often adds a comment or two.

“His clear, sweet, high-pitched voice . . . together with his very angelic face, breaks hearts,” the Easter Seal official in Eureka, Calif., wrote about finalist Sierra Prine.

Finalist Olivia Campbell “has a special magnetism that will draw you near and steal your heart,” an Easter Seal official promised in a letter with Olivia’s application.

Letters of recommendation, color photographs, newspaper clippings of feature stories and videotapes of the child playing the piano or in conversation with relatives are parts of the standard nomination package.

The number of nominees is usually small--just 12 arrived this year. Not many disabled children are considered up to the rigors of travel and fewer still have a parent free to accompany them.

Diane Sibley, whose daughter Danielle was poster child in 1985, remembers the year as a rewarding experience but “a lot more tiring than we expected.”

Perkins and her staff sift through the nominations, looking for qualities the national office considers important.

Makes Appearances

First, the child must have received extensive Easter Seal services, such as attendance at camps, physical therapy or speech therapy. The national poster child makes appearances for companies “who invest a lot of money in Easter

Benefits Count Heavily

Perkins once had to dismiss a “darling” candidate in Los Angeles because the girl had received only braces and crutches from Easter Seal services. “That’s important, but not enough. I want to show we’ve made a difference,” Perkins said.

The child is, after all, the most visible symbol of what the Easter Seal Society does. Its 800 affiliated chapters spend nearly $200 million a year on rehabilitation, job training, recreational facilities and psychological counseling for more than 1 million people. (The society also selects an annual “National Adult” representative.)

Perkins looks next at specific disabilities. A child who cannot speak clearly does not have much chance of becoming the poster child. Being able to tell people about their lives is important.

Perkins set aside the application of one girl who has brain damage caused by a head injury. “I’d love to spotlight that disability and tell people more about it,” Perkins said, but speech problems and memory loss usually make individuals with brain damage poor poster-child candidates.

One application describes the child as “shy at first.” That nomination is doomed. “I hate to discriminate on the basis of shy, but ‘not shy’ is part of the job description,” Perkins says.

Another important criterion is that the child has been “mainstreamed,” that is, has attended school with able-bodied children. That shows that he or she has not been sheltered and is accustomed to answering questions about his or her disability.

Backgrounds of Publicity

Having had some experience in the public eye is not required, but most candidates have been a city or state poster child and have resumes rich in television commercials and personal appearances.

Perkins narrows the field to four children, and schedules her travel so that she can spend a couple of hours at each finalist’s home, followed by lunch out with the family. That lets her see how the family treats the child, how comfortable they are in public places and how willing they are to share their experiences.

She is looking for a family that has overcome the natural urge to coddle and is helping the child to be independent. She also looks at the family’s “story”--experiences that might make a good feature article for newspapers or television.

Child a ‘Good Example’

Jamie Brazzell, this year’s poster child, was chosen partly because his mother and father had fought to have him accepted into the local public school and to have him picked up each day in a specially equipped school van. “He is a real good example of the rural experience for disabled people,” Perkins says.

A sense of humor and a spirit of adventure are important attributes to any poster child and family, for the days when airports are fogged in and homework has to be done after only a few hour’s sleep in a hotel room.

Year of Fame Must End

A sense of perspective comes in handy as well. When Danielle’s year in the spotlight was over, “we had to remind her that she wasn’t going to be a princess or a Hollywood star, and that she had to return to real life,” her mother says.

In the end, though, after studying the applications, interviewing the finalists and talking with her colleagues, Perkins usually turns to one remaining criterion--”My gut feeling,” she calls it.

This year’s interviews began in Manchester, N.H., a factory town where Brian Carr, a brown-haired fifth-grader, lives in a tough neighborhood on the edge of downtown. His father is a bus driver for the local Easter Seal center and his mother is a part-time teacher’s aide. He has a teen-age sister and shares a tiny room with a Vietnamese boy the family took in a few years ago.

Brian, 11, has spina bifida, a spinal condition that 8,000 children are born with every year. When he was born he was so ill that his parents were faced with deciding whether he should be allowed to die. One doctor told them that choosing life would be unfair to their son because he would never become financially or socially independent.

“They were wrong,” Brian’s father says now. “Doctors can see what’s wrong with someone but they don’t see the spirit in a person.”

Mobilized in Therapy

Brian’s legs are paralyzed and he gets around the house in his wheelchair, on crutches or by using his hands and arms in a modified crawl he learned from the Easter Seal physical therapists.

Within minutes of Perkins’ arrival, Brian is showing her his drawings, including a self-portrait he gives her. He says he loves baseball and professional wrestling and wants to be a stunt man when he grows up.

What Brian likes best about Easter Seal therapy, he says, is that “they don’t get mad at you if you don’t do something right . . . and if you don’t have any spare change and you want a gum ball, they give you 10 cents.”

Sense of Humor Needed

Brian thinks the national poster child “should have a good sense of humor. He shouldn’t have stage fright, and he should be intelligent--like me.”

His mother laughs. “I think Easter Seals did too good a job,” she says.

Perkins outlines the year’s highlights: The child and accompanying parent will make several dozen trips, with expenses paid by the society or its sponsors, although there is no other financial reward. Brian’s mother seems surprised by the amount of travel and worries that she would have to miss too much work. That concerns Perkins, who wants the entire family to be behind the project, without reservations.

Speech to Finalists

After lunch, Perkins gives Brian a speech that she gives to all finalists: “There is only one child chosen,” she says. “And even if you’re not picked you are still a neat kid. You know that, don’t you?”

Brian says that he understands, but he seems confident. “No contest,” he tells his sister. Then he flashes a No. 1 sign.

Perkins’ next stop is a snow-covered, ranch-style home on a quiet street in rural West Simsbury, Conn., a bedroom community west of Hartford. Susie Wilcox, a dark-haired girl with a broad smile, lives there with her mother, Louise, and 12-year-old sister. Susie, also born with spina bifida, was a finalist for national poster child last year and Perkins remembers it as a difficult choice: “I couldn’t sleep, it was so hard” to choose between Susie and Jamie Brazzell.

Susie’s parents are divorced. Her father is a high school English teacher. By talking about the divorce, Perkins says, Louise Wilcox would illustrate a fact of life with disabled children: their presence often puts pressure on marriages.

Susie says that she thinks the ideal poster child would be “someone who is real friendly, never shy, never impatient, never stealing--and never sucking his or her thumb at the White House.”

Competed in Karate

She admitted, though, that she might be a little less than perfect, because “there’s one habit that I still have--sleeping with a blue blanket.”

Susie has been taking karate lessons, performing the punches with her arms and hands--and announcing them in a booming voice. She has worked her way up from a white belt to a yellow belt to an orange belt, and her efforts earned her a second-place trophy in a recent tournament in which she competed with able-bodied children and was judged on her movements above the waist.

Easter Seals “made me a star,” Susie tells Perkins.

Perkins has to smile. It is true. The walls of Susie’s home bear much of the evidence: Susie posing with Easter Seal officials, local television stars, entertainers and politicians. Her application notes more than a dozen public appearances, from local fund-raisers to promotional films for hospitals and charities.

Susie created a stir when she appeared in a commercial for an Easter Seal “Strawberry Sundae Promotion” at a local ice cream restaurant. Her job was to say how much she liked strawberry ice cream, but she balked. She informed the director that chocolate, not strawberry, was her favorite flavor.

The director pleaded and finally, Susie relented. The cameras began to roll. Susie said her line: “I love strawberry ice cream.” After a pause she added: “But I like chocolate better.” That’s how the commercial appeared.

Northern California Nominee

Perkins left New England for California, to resume her quest in Fortuna (population 4,000), a long day’s drive north of San Francisco.

Sierra Prine, a tiny 6-year-old with brown bangs framing soulful eyes, lives there among the giant redwood trees with his parents, two dogs, several chickens and rabbits. His father, Jim, a quiet, bearded man, is a cabinet-maker. His mother, Sue, is president of a support group for parents of children with disabilities.

Sierra has osteogenesis imperfecta, a disease that affects one child in every 50,000, or 78 a year in the United States. His bones fracture easily and he uses a small, customized wheelchair.

The director of the local Easter Seals chapter, Bonnie Kavanaugh, who nominated Sierra, says to Perkins that he has been practicing his speech. “He says that if he were the poster child he would help all the children of the world,” she says. “His mother thinks he’s seen too many Miss America pageants on TV.”

It turns out that Sierra’s true passion lies with more common stuff: cartoons and rockets, playing checkers and going fishing. He stretched his arms wide to describe the fish his father recently pulled out of the Pacific. “It was so big that one end was out of my wagon and the other end was out of my wagon on the other side,” he said.

Too Young for the Job

Sierra talked nonstop at times, but his attention span was short and he was too young to answer most of Perkins’ questions.

Two days later, in early March, Perkins was visiting 7-year-old Olivia Campbell in a tidy, one-story house surrounded by magnolia trees on a coastal plain 20 miles from Mobile, Ala.

Olivia--or “Livvy” as she is called at home--has long blond hair, blue eyes, a brimming smile and a soft Southern accent. She was born with spina bifida and uses leg braces.

As Alabama’s Easter Seal poster child in 1985, Olivia was nominated for national poster child last year but Perkins thought she was too young. Her application this year describes her as “articulate and definitely not shy.”

Olivia turns out to be a good listener, if not as talkative as advertised. When asked why she wanted to be the national poster child, she smiled and said quietly: “I’m just so excited about it! All the time my Mommy talks about it, I get happy.”

Her mother has been teaching the local school how to handle a first-grader with a physical disability. “You have to get out there and be your own advocate,” she says.

Finalists Compared

Perkins headed back to Chicago. It was time to make a decision.

Susie Wilcox is “a real charmer,” Perkins says. “She would come up with some things during the year that would bring the house down.”

Brian Carr and his father would also be good, but his mother’s lack of enthusiasm is a drawback. “I want someone who looks at the travel as an adventure,” Perkins says.

Sierra Prine is “a bright little kid, fun to be around, and he has a terrific family,” she says. But he is still too young.

Olivia Campbell was more talkative and patient than Sierra, but still not as spontaneous as Susie. “In a year, she’ll be a more interesting person to interview and talk to,” Perkins says. “She could make it real easy for me next year.”

Perkins talked it over with her boss, Executive Director John R. Garrison, and called Connecticut with the news.

“I did it! I did it!” Susie shrieked, raising her hands and doing wheelies in her chair in the living room.

Later, she went to her room to sing some of her favorite songs, already thinking about performing on next year’s Easter Seal telethon. “I better start practicing,” she said.