Without relying on arms or legs, teen succeeds at Sacramento’s Luther Burbank High School

Stephanie Arnold, 15, uses her mouth to hold a paintbrush in art class at Luther Burbank High School in February. Stephanie has arthrogyposis, a rare condition that limits the use of her arms and legs. But she doesn’t let it hold her back in school.
Stephanie Arnold, 15, uses her mouth to hold a paintbrush in art class at Luther Burbank High School in February. Stephanie has arthrogyposis, a rare condition that limits the use of her arms and legs. But she doesn’t let it hold her back in school.

Spanish teacher Elizabeth Villanueva said she will never forget her first day teaching Stephanie Arnold.

She was passing out pencils to her first-period class at Luther Burbank High School when she came to the teenager who was born unable to use her arms or legs.

“I asked Stephanie, ‘What can I do?’ ” Villanueva recalled.

From the back of the room came another student’s answer: “It’s OK. It’s Stephanie. Just put a pencil in her mouth.”

So began high school for the freshman, now 15, who has lived her life against all physical odds by not wanting to miss a thing. She is open to sharing who she is, she said. And she knows what she wants.

“My parents said I was always an open kid. I am not shy,” Stephanie said. “I learned to deal. I never got picked on.” At least, she said, she never got picked on for being disabled.

Stephanie is one of more than 70 students who are moderately to severely disabled at Burbank, which has about 1,700 students, said special education teacher Greg Polo. The mix has helped generate a culture of tolerance as the school seeks to include all those who are capable in general education classes, he said.

Stephanie was born with arthrogryposis, meaning that at birth her limbs were in fixed positions, requiring multiple surgeries. She lacks all but the most limited use of her arms and legs.

But she is determined, said her father, Brian Arnold. And smart.

Stephanie is enrolled in advanced classes at Burbank, including Spanish, English and geometry, all precursors to the International Baccalaureate diploma program she’ll pursue in her junior and senior years. She has straight A’s, say those who know her.

Arnold said his daughter wants to do most things herself. Stephanie writes with a pencil in her mouth. Her penmanship is careful and clear. She turns the pages of her notebook. She leans forward in her electric wheelchair to draw or paint.

She began writing in preschool. “The teacher’s aides said, ‘You should try doing it like this (pencil in mouth) instead of having someone write for you,’ ” Stephanie remembered.

She laughs at the recollection. “I was really horrible at it,” she said. “My penmanship was horrible. But now people say I have better penmanship than they do.”

By the time she arrived last fall in teacher John Doolittle’s art class, she was savvy.

“Instead of having to teach her what to do, she already knew,” he said. “I would demonstrate some things to the class and she would naturally adapt.”

The week before Christmas, he said, she surprised him by how she accomplished one project: origami, using her mouth and nose to fold paper into a twirling airplane.

“I have some students who, for whatever reason, say they don’t feel like doing (the work) today,” Doolittle said.

“Here’s this student who can’t (easily) do it and has every reason not to want to, and she pushes herself to make it work,” he said. “It’s every reward that a teacher wants in a career.”

The school is encouraging Stephanie to use a MacBook Air with voice recognition. Stephanie hasn’t yet warmed to the idea.

“I like writing, like notes, with my mouth and stuff,” she said. “But they want me to take a more professional approach to it.”

What Stephanie wants is what many teens want: To date. Be independent. Go to college. Live a full life. Have friends.

She wants to pursue art and hopes to attend the Academy of Art University in San Francisco or the University of Oregon, she said.

One morning, after Stephanie had finished her breakfast but not yet left for class, freshman Giovanni Figueroa dashed into the cafeteria looking for his shoes.

“The custodian took them,” Stephanie told Giovanni, 15.

Giovanni headed toward the door, still in a hurry, when he stopped short and asked Stephanie, “Are you going to the band concert tonight?”

“She’s an easy person to be around,” Giovanni said later. “First of all, she’s hecka smart. And she’s fun.”

Giovanni said he has known Stephanie since both were in the fifth grade, when he volunteered to be a helper for classmates with disabilities.

Stephanie’s friends are a combination of disabled and not, she said. When her aide is not on hand to feed her breakfast, Stephanie’s friends may feed her.

Among her friends are classmates from her days at Bowling Green Elementary and Fern Bacon Middle schools, she said.

Arnold said his daughter benefited from inclusion in general education early, in the second grade, after she spent kindergarten and first grade in special education classes.

Teachers urged him to allow the switch, he said, telling him that if she stayed in special education classes, she would be held back academically. “She’s too smart,” they said.

She adapted well to the change, he said.

“They had a buddy system,” Arnold said of her elementary years. “She had so many friends around her, if she dropped her pencil they were quick to get her back on track.”

Stephanie said her path through public school has made all the difference.

“When I started my regular education, I felt normal,” Stephanie said. “Well, not normal. There is no such thing.

“I felt that if I can do this, I can do anything.”

Call The Bee’s Loretta Kalb, (916) 321-1073. Follow her on Twitter @LorettaSacBee. The Bee’s Manny Crisostomo contributed to this report.

About arthrogryposis multiplex congenita

The condition describes curved, fixed joints in multiple areas of the body at birth. Symptoms can vary from person to person; in Stephanie’s case, it left her with virtually no use of her legs and arms. It is not a progressive disease, meaning that it does not get worse over time. Causes can vary. It is estimated that 1 in 3,000 are born with the disease.

Sources: American Association of Neuromuscular & Electrodiagnostic Medicine; Arthrogryposis Multiplex Congenita Support Inc.