LINCOLN — Fifth-grader Jesus Rosa-Ivey Jr. opened the hearts and minds of his fifth- and sixth-grade classmates at Lincoln Community School this year. He inspired his teachers to think beyond the boundaries of conventional education and consider new levels of intelligence.
He was also a student with severe cerebral palsy, who couldn’t walk or speak.
When Rosa-Ivey entered the fifth grade at LCS last fall, his teacher Alice Leeds dedicated a unit of study in her fifth- and sixth-grade class to disability rights and awareness in the United States.
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The unit’s culminating component is a play running this week at LCS. Derived from the Sharon Draper book “Out of My Mind,” the script was written by Leeds and local theater artist Deborah Lubar. It details the struggle and frustration that an 11-year-old girl with cerebral palsy encounters when she tries to fit in and succeed at a public school.
As the catalyst for the unit of study and the theatrical performance, Leeds was planning to incorporate Rosa-Ivey into the show.
“For the kids, he was the star,” said Leeds. “We were going to have him in the play. But we were in the process of figuring out what was going to work for him.”
As the school year progressed, Leeds and her students said, they began to learn how to better include Rosa-Ivey in classroom exercises. The students would take turns spending time at recess with him. They’d read to him. And they created a song with music teacher Chris Gribnau for Rosa-Ivey, who smiled joyfully when he heard music.
A chorus in the song chimed, “When you’re not near us, we’re blue. Oh Jesus, we love you.”
But in December, as rehearsal for the play got into gear and Rosa-Ivey moved deeper into the hearts of his classmates and teachers, he fell ill.
Sadly, 11-year-old Jesus Rosa-Ivey died at his home in Lincoln on Dec. 14, 2011.
“His death was huge, especially for certain children,” said Leeds. “There were kids who were very, very connected to him.”
One of those students was fifth-grader Tom Carlton, who was in the same fourth-grade class with Rosa-Ivey. The two friends communicated using a special language based on touch.
“He was out for a little while, and I was hoping that day he would come back because I really liked having him there,” Carlton said after the first LCS performance of “Out of My Mind” on Tuesday. “I thought it was going to be a normal day with Jesus there. Then they told us the news, and the day wasn’t really normal, it was …”
Carlton trailed off into silence.
THE PERFORMANCE
The LCS fifth- and sixth-graders dedicated “Out of My Mind” to Rosa-Ivey. It opened with a 1 p.m. show on Tuesday, with three more shows over the week. Roughly 200 students from other area schools who also read Draper’s novel, which was nominated for a Dorothy Canfield Fisher Children’s Book Award, will see the show Friday morning.
Four students spoke before the first performance.
“We dedicate this play to Jesus Rosa — a great friend to all of us — who recently died on Dec. 14, 2011,” said Carlton, who made one of the four speeches. “We all miss you, Jesus. It was great getting to know you.”
The main character, Melody, is represented in the performance by Jesus’ empty wheelchair and the voice of sixth-grader Aine Alexander. Leeds didn’t think a student could respectfully play the role of a child with severe cerebral palsy, and she wanted to draw the audience into the emotional performance. When characters speak to Melody, they often face the audience, invoking feelings of loneliness, confusion and delight.
“Initially, the idea was to have the audience be Melody because we knew it would be too hard for a child to play a student with that level of disability,” said Leeds. But to get into Melody’s mind and give her a strong identity, Leeds gave the main character a voice.
At the start of the show, audience members find themselves in the mind of an 11-year-old child, struggling with cerebral palsy and the usual odds and ends of adolescent life.
“By the time I was two, all my memories had words and all my words had meanings, but only in my head,” resonated Alexander’s voice through the PA system, representing Melody’s thoughts. “I had never spoken one single word. I never will.”
The play depicts a student with disabilities, who is stranded by an education system that is constantly trying to make her fit a mold she’ll never squeeze into. After having the ABC’s rammed down her throat for four years, the lights flash, the music grows discordant and Melody’s thoughts scream, “I can’t take this anymore! It’s making me nuts!”
Stuck in a body that won’t function the way she’d like, Melody finds herself tangled in a world of words without a way to let them out.
“It’s like somebody gave me a jigsaw puzzle, but I don’t have a box with a picture on it,” thinks Melody. “So much is stuffed inside my mind … I’m surrounded by thousands of words. Maybe millions.”
Melody eventually learns how to use a special computer and is able to communicate and attend class with the help of an aid and her thumbs. But even after proving she’s as smart as any student in the class, she still has to deal with the social construct of discrimination.
ISOLATION
Research conducted in recent years by leading neuroscientists suggests that humans are inherently social animals, and loneliness can cause profoundly negative psychological and physical effects.
As two fifth- and sixth-grade classes learned this school year, this social phenomenon is true of all people, including those with disabilities. The “Out of My Mind” performance illuminates how society can ostracize people that are different and why it’s important to include others.
“Even though the Americans With Disabilities Act has created an accessible environment of much greater access for people with disabilities, it’s up to all of us to fully embrace people who are, on face value, much different than the rest of us,” said Leeds. “It’s not a very cut-and-dry issue, but if we do have students with profound disabilities we need to find ways to integrate them socially, not just academically.”
Through this year’s unit of study, many of the Lincoln fifth- and sixth-graders began to look at their own personal challenges, said Leeds. One autistic student told Leeds that she wouldn’t give up her disability because it creates other abilities for her. The exploration into disabilities helped Lincoln students take a critical look at their own skill sets, identifying not only their weaknesses, but also their strengths.
None of these realizations, said a group of students after Tuesday’s performance, would have arisen if it wasn’t for Rosa-Ivey.
“Everyone loved Jesus because he was like the shining star in a whole school,” said Carlton.
Reporter Andrew Stein is at [email protected].