It has been more than 30 years since the federal government first declared that children with different abilities shouldn’t be automatically separated from one another in school. Julia Horsman’s parents, and others all over the country, are still fighting to have the law enforced. Too often, they say, school administrators’ first instincts are separation, not inclusion.
“But when you read the law it’s so clear cut,” says Julia’s mother, Lisa Horsman.
The problem is that the radical changes the law promised never sunk in at the ground level — namely, in teacher-education programs, says Kathleen Whitbread, an associate professor of education at Saint Joseph College in Connecticut.
The latest figures from the U.S. Department of Education show that, overall, almost 57 percent of students with disabilities spend the majority of their day in traditional classrooms. But that number masks a wide range of outcomes for a diverse group of students. For students with mental retardation, for example, the inclusion rate is less than 16 percent.
“Change is slow, yes,” Whitbread says, “but this is ridiculous.”
When Whitbread was studying to be a teacher in the early 1980s, her special education classes didn’t include teachers learning to be math or kindergarten or chemistry teachers.
“All of the students in my classes were special-ed teachers,” she said. “We were focusing on things like behavioral modification, functional skills, teaching kids how to tie their shoes and brush their teeth.” Then she met an inclusion activist who put things in perspective for her.
“She said, ‘Is the child breathing? Then they belong in a regular class,’” Whitbread says. “I think that people respond to the civil rights argument, that it’s wrong to separate children. Would you put all the blue-eyed children in one classroom? Of course you wouldn’t.”
While St. Joseph and a small number of teacher-training programs no longer have separate tracks for special education teachers and everyone else, Whitbread says the combined approach remains uncommon.
She and other advocates say the time has passed — though not everyone has accepted it — for special education to be thought of as a place, instead of a service.
“Teaching is about taking the child that you get and using what you’ve learned to reach this child,” Whitbread says. “This is what we should have been doing in 1976.”
The Case for Inclusion
Early on, Julia was in a separate classroom but the teacher seemed passionate and her daughter seemed to be learning, Lisa Horsman recalled. Isolated, but educated.
Then the teachers seemed to stop caring.
And Julia stopped learning.
“I went in there to watch one day and the teacher said ‘Let’s go back to the reading we were reading yesterday,’” Horsman said. “They had nothing to look at, nothing to follow. They were seven or eight little zombies sitting there, with their desks cleared off.”
After watching Julia languish in that separate room — where all the other students were boys — she decided she couldn’t let the school district in Prince George’s County, Maryland, make decisions for her anymore.
“I [had done] what I thought was best for my kid, what the doctors told me, what the school told me,” she says. “And I was punished for it.”
Horsman called the Maryland Coalition for Inclusive Education, where attorney Selene Almazan took on Julia’s case.
“I represent families who want their children to go to their neighborhood school,” Almazan says. “Really, it’s just an enforcement of what their child is legally entitled to.”
“There’s been some progress,” she says, but “it is not uniform across the country. There is this whole idea that with kids with disabilities, you need to take care of them. It really is rather paternalistic in many ways, rather than looking at each individual child. I’m hard-pressed to find where there’s good education in these segregated classrooms.”
It’s no wonder, she says, that many schools continue to assume these same children won’t be successful in a regular classroom, she says.
“I’ve found that the opposite is true,” she says.
As with Julia.
And an experience like Julia’s is possible only if schools put in the effort to make inclusion meaningful.
“As kids started to spend more time in regular classes, then we had to fight for teaching them,” Whitbread says. “That to me has been the more frustrating fight.”
Who Wrote Holden Caulfield?
For many parents of children with disabilities who manage to get their children included, their work is far from over. Many say they have turned into part-time teachers once their kids make it into a regular classroom.
Ricki Sabia says creating study guides and finding supplemental materials for her son has been a part of her life for years — on top of her work as a lawyer and on the staff of the National Down Syndrome Society.
Her son, Steve, is in the 11th grade and has Down syndrome. When the rest of his class read the Odyssey, Steve read the 130-page abridged version, watched the movie and used a computer program that tested his comprehension.
There's been some progress, but it is not uniform across the country. There is this whole idea that with kids with disabilities, you need to take care of them ... rather than looking at each individual child.
When his class read Shakespeare, she found something called “No Fear Shakespeare,” which had the original text on one side of the page and its modern English translation on the other.
“Why should he read Shakespeare? Why is that important for any kid?” Sabia says. “To broaden his horizons. To have common experiences. To see what he likes and to shape what he is going to do. When he’s on the subway and he sees a picture of Shakespeare, he knows who that is.”
Getting through The Catcher in the Rye was particularly difficult, she says, because she couldn’t find this novel — centered on one character’s feelings of alienation — in any other format. Still, her son plodded through it. And the experience stuck with Steve, a boy the Maryland school system wanted to teach how to sweep floors, run a washing machine and cook.
“He likes the band Green Day, and they have this song, ‘Who Wrote Holden Caulfield?’” she says. “He knew what that was.”
Sabia says the development of curricula designed for all kinds of learners is finally happening on a large scale, such as Universal Design for Learning, created by the Center for Applied Special Technology in Massachusetts. It offers a blueprint for teachers working with students with varying needs.
“Their idea is the curriculum is what’s broken, not kids,” she says. “Schools should look at who are in their classes now. We’re not designing curriculum for them all.”
Even without an investment in a ready-made curriculum like Universal Design, the inclusion process might go more smoothly if all teachers in a school were to collaborate, Whitbread says.
Well-trained special education teachers already know many unique ways to reach children who have different learning styles, Whitbread says. If one approach doesn’t work, they will know of another.
But if individual classroom teachers continue to be confronted with reinventing these approaches each time they have a student with disabilities, inclusion can seem impossible.
“It’s always been ‘Special education? You go there,’” says Sharon Leonard, an educational consultant at the Pennsylvania Training and Technical Assistance Network. Instead, Leonard says, teachers should see special education as a service they bring to the student. “We can’t get a better placement than that general education classroom.”
Learning the Ways of the World
For Julia Horsman, life at her old school, in that separate classroom, was lonely. As the only girl, she was already isolated. She learned some vulgar words from the boys in her class, which she repeated at home. Her sweet temperament turned sullen.
She stopped smiling, says her mother.
But school district administrators warned that Julia would be just as isolated in a regular class. They said she would fail. They said she would be miserable.
The Horsmans consulted a neuropsychologist, who had a different vision. He expected Julia to blossom, and predicted that other kids would be nurturing.
“It was exactly the way the neuropsychologist said,” Lisa Horsman says. “The teacher said, ‘Whenever I would tell the kids to pair up, everybody would be fighting over Julia.’”
Almazan, who helped get Julia into her inclusive setting, notes that Julia didn’t just raise her reading level during her first year in a regular classroom.
“She got birthday party invitations,” Almazan says. “When a child is a part of the classroom and accepted by peers, peers get it. Kids know when another child needs help. Kids are the ones that can tell another kid, ‘You’re not supposed to hit.’”
Sue Davis-Killian’s daughter Lisa has Down syndrome, and Davis-Killian insisted on full-time inclusion in Florida schools. Beyond her firm belief that Lisa will get a real education in an inclusive setting, Davis-Killian wants her daughter to learn the ways of the real world.
“Most adults with cognitive disabilities are unemployed,” Davis-Killian notes. “And the biggest reason that they lose their jobs is that they don’t understand the rules: They don’t show up on time or don’t show up at all. They don’t listen to the boss.”
In segregated classes, Davis-Killian says, too often there is no reinforcement of basic social norms, like being on time. Special education buses often arrive at school late and leave early, she says. But for Lisa, an eighth-grader, school starts at 9 a.m., period.
“She knows she can’t just go walking into class whenever she wants,” Davis-Killian says.
Behaviors that can draw attention to a particular disability aren’t curbed in segregated classrooms, she says.
Like many people with cognitive disabilities, Lisa had her own soothing behavior. Lisa would put her head down and make a humming noise.
“It took me and the school two years of saying, ‘Get your head up’ to stop her from doing that,” she says. “I saw another girl in a segregated classroom and watched for 15 minutes as she hummed to herself. She was 6. Nobody ever said anything.”
The teachers in the special-ed classroom “don’t hear it anymore,” Davis-Killian says, while in a regular classroom, it wouldn’t be tolerated. “That behavior will incredibly limit what you can do in life,” she says.
From her life of inclusion, Lisa has learned hip lingo, and she knows how to send text messages to her friends — and how to delete the call logs so her mother doesn’t know she made calls after bedtime.
“It’s not that she doesn’t do anything different — she does have Down syndrome,” her mother says. “But that’s the aspect that inclusion can’t quantify: She still doesn’t realize that she’s different.”
After all the years of fighting over Julia Horsman’s placement in her neighborhood school, her inclusive status will become uncertain again when she heads to middle school next fall.
The school district only agreed to a two-year trial, at the end of which they will evaluate Julia to see whether she should go back to a segregated setting.
Tina Progar’s son Patrick was included from kindergarten through middle school. But when Patrick, who has Down syndrome, entered high school two years ago, the district balked. They say they don’t have the resources to make general education classes fit Patrick’s needs. So now he spends most of his day in a special education classroom with other teenagers who have a variety of disabilities.
“Pat’s life is now part of a group,” says Progar, of Maryland. “He is now a special-ed kid.”
Her once-independent son with a knack for technology, a host of friends and a sharp sense of humor has become withdrawn.
And Progar is exhausted. As she continues to plead with the school to let Patrick spend more time in general education classes, she is working on another project. She wants to find a place for Patrick to spend part of his day volunteering, which would give him the opportunity to socialize and regain some of his independence.
“I have gone before the school board. I joined a group that’s working for the least restrictive environment for kids with disabilities,” she says. “All of these families are getting burned out. And I cannot wait for my son to get out of school.
“Inclusion can be law in the books, but this is an attitude issue.”
For now, Julia Horsman is just one of the kids at her school. Julia still takes time out of class for occupational therapy, so she can master things like opening zippers, but otherwise, her mom says, “I almost forget she’s in special ed. There’s so much less fighting to do.”
At a parent-teacher organization meeting last school year, Lisa Horsman ran into Julia’s principal, Justin FitzGerald.
“I know there was some reluctance to have her,” Horsman told him, but “she’s where she belongs.”
He looked at her and replied: