It's a nice, warm, all-embracing, democratic kind of word. Who would not want to be included? Who could possibly be in favor of exclusion? Yet inclusion has become a lightning rod in the world of education, especially among those concerned with disabled children.
Some view inclusion as the passport to opportunity for tens of thousands of long-isolated youngsters. "Inclusion is not a program," says Charlene Green, who heads special-education programs for Chicago's public schools. "It's an attitude that has to permeate a whole building and everybody in it. It's a holistic attitude that puts kids first. We haven't got that far yet, but it's coming."
Others see inclusion as a Trojan horse, a deceptively appealing theory that will benefit only cynical bureaucrats, while wreaking havoc on children. "I'm afraid kids are being victimized," says Charlotte Des Jardins, director of the Chicago-based Family Resource Center on Disabilities. "We know how school boards and politicians operate. The way it's going, decisions are taken out of the hands of parents. Decisions are dictated far more by financial considerations than children's needs."
Clearly inclusion carries a lot of baggage, much like other high-sounding expressions--racial integration, affirmative action--that have become battlegrounds.
One hundred years ago the general consensus among professionals was that children who were "not normal"--the mentally retarded, the crippled, the deaf, the dumb, the blind--should be secluded as much as possible from the uncomprehending outside world, for their own well-being and for the smoother functioning of normal society. The institutionalization movement advocated protected environments, preferably in quiet rural settings, where the handicapped could live out their days among their own kind, perhaps never even realizing their inadequacies. But the large "schools" and "homes" that were established too often became warehouses and dumping grounds, with bedlamlike living conditions and no schooling or training. So the pendulum has gradually and grudgingly swung. Just as mental hospitals in the last 30 years have released patients in the name of deinstitutionalization, residential facilities and parents are under pressure to let disabled children be "integrated" and "mainstreamed." But integration and mainstreaming are timid, partial steps. Inclusion goes further.
Through a string of federal laws over the last 28 years the trend has become a virtual mandate--a mandate honored as often in the breach as in the observance. Beginning with the Elementary and Secondary Education Act of 1965 (which authorized the first grants for disabled children) and the Education of All Handicapped Children Act of 1975 (which said all children, regardless of disability, are entitled to an appropriate education) and continuing through the Education of the Handicapped amendments of 1990 (which extended public services to children who were emotionally disturbed or autistic or had brain injuries), the move has been in the direction of inclusion--placing even the most seriously disabled in normal educational settings to the maximum extent possible. For those who believe in the concept, inclusion has become a kind of civil rights movement.
"The work I do is satisfying and it's maddening," says Matthew Cohen. "We keep nibbling away at the foundations of the educational system, when what we need is a whole new system that isn't so rigid, that doesn't destroy creativity and imagination." Cohen, 37, is cofounder of Monahan & Cohen, a ten-attorney law firm that concentrates on special-education cases. Two-thirds of his own practice is in this area. He has represented scores of parents unhappy with their children's isolation and lectures widely on the legal aspects of inclusion.
A friendly man with a short brown beard, Cohen sits in shirtsleeves in his 22nd-floor office on West Washington explaining the intricacies of inclusion law with the patience of a Talmudic scholar instructing the uninitiated. This is no easy task. Not only are the concepts multifaceted, but the very language of special education has undergone radical change in the past 20 years. "Handicapped" as the generic, descriptive word has been replaced by "disabled," and practically every organization in the field has changed its name to reflect that fact. (The Family Resources Center on Disabilities, for example, was once the Coordinating Council for Handicapped Children.) Even history has been rewritten: the Education of All Handicapped Children Act has become the Individuals With Disabilities Education Act (IDEA). The mentally retarded are known as "cognitively disabled" or, even more euphemistically, as "cognitively delayed," the crippled are now "physically disabled," the blind are "visually impaired," etc. Practically the only remnants of the old language are "EMH" and "TMH"--to distinguish the "educable mentally handicapped," with IQs between 85 and 55, from the "trainable mentally handicapped," with IQs between 55 and 35--but they're usually used only in acronym form and rarely spelled out.
Regardless of the terms employed, the labeling of disabilities is "arbitrary and degrading," in Cohen's view. "We have all these labels like "behavior disorder' or "speech and language impaired,' and the placement of children in schools and programs is too often based on the label instead of the needs of the child. It's a compartmentalized system that tries to make the pegs fit the holes, that doesn't tolerate any flexibility."
The law, spelled out most clearly in the IDEA, declares that a free, appropriate public education shall be provided for all children without cost to their parents, regardless of the severity or type of disability. In addition, the education must be provided in the "least restrictive environment"--that is, to the maximum extent possible, students with disabilities are to be educated with children who are not disabled. For each child receiving services an individualized education plan must be developed by a committee composed of the child's teacher, the child's parent, and a representative from the local school district. Finally the law says parental involvement is required in all decisions regarding programming of students with special needs, though it doesn't say who has the final word when conflicts occur.
Cohen says school boards across the country have resisted the spirit and letter of the law. In many districts, he says, students remain in residential facilities or special-education day schools because local boards simply refuse to pay for the equipment and aides needed at the local school. In other districts, private schools are reimbursed only if the students are served by teachers licensed to work with specific disabilities, though no such requirement exists if the child remains in a segregated setting.
The labeling problem, says Cohen, shows up most clearly in the proliferation of special-education school districts, cooperative arrangements between several regular school districts, across the country. While these would seem to be a response to the call for "an appropriate public education," he believes they foster segregation. Though in many of these districts a certain amount of mainstreaming may occur--with the special-ed students mixing with the nondisabled population for lunch or gym class or school assemblies--they remain in every respect "special" both by their clearly identified disability and by the fact that they're under the authority of the special-education district. A 1992 study by the National Association of State Boards of Education called these districts "a vast and separate bureaucracy . . . characterized by separate policies for special education students and staff, separate funding mechanisms, separate administrative branches; a system of classification for labeling children that is considered by many to be demeaning and nonfunctional for instructional purposes, and a separate cadre of personnel, trained in separate pre-service programs, who serve only students with diagnosed disabilities." The result, said the study, is that only 5 percent of all students labeled for special-education services ever leave the system.
"What we need," says Cohen, "is a general starting assumption that a child belongs in a regular school and is the responsibility of the regular staff and principal. If adaptations are necessary to supplement or support instruction, let's have them. But don't begin with the assumption of separateness and make the child prove that he deserves not to be segregated."
On the wall of Cohen's office is a framed, yellowed page from a 21-year-old issue of the New York Times. It shows a picture of Albert Einstein and this inscription:
He didn't say his first words until he was 3.
At 7 his teacher said nothing good would ever become of him.
When he was 16 he left his homeland to avoid the draft.
He couldn't get a job at 19 because of his long hair and wrinkled clothes.
Before he was 30 he revolutionized man's understanding of nature.
"It was from a promo for an educational supplement in the paper, and it struck a chord with me," says Cohen.
Cohen was raised in Evanston, and both his parents were social workers much concerned with civil rights issues. After obtaining his law degree from the University of Minnesota, he worked for a small public-health agency, then set up a private practice in Skokie. He first traversed the special-ed mine field representing several parents who wanted to get their children out of separate classes in day schools and into fully segregated, residential settings. "I felt uncomfortable about that," he says, "but the parents' rights were not being respected, and they needed representation."
He's far more comfortable working with clients who are trying to get their children into fully integrated, inclusive settings. "The big argument you hear in all these cases is that inclusion is going to cost more money if it's done right, if the needed services and support personnel are provided. And they're right. It is going to cost more money. Everyone, especially school boards, has to face that fact."
One of Cohen's more publicized cases involved Nathan Carter, an eight-year-old boy from Peoria with Down's syndrome. Determined to give him as normal an education as possible, his parents enrolled him in their neighborhood kindergarten in August 1991 without informing school officials of his disability. But he lasted only eight days before his teacher complained of his "impulsive, tantruming behavior." A school-ordered social-development study and a psychological evaluation categorized Nathan as "trainable mentally handicapped" and recommended placing him in a class at a special-education cluster site some distance from his home. His parents, who have seven children, four of whom are adopted and have special needs, contacted Cohen, and a yearlong struggle began. The Carters obtained an independent evaluation that indicated Nathan could obey instructions and act appropriately, though he required "a little more time" than his nondisabled peers. Placing him in a TMH setting would require a 20-minute bus ride to school, argued Cohen, and it would greatly limit his instructional opportunities by denying him regular interaction with nondisabled children who could serve as role models for behavior and language development. The school district, however, produced testimony from teachers who portrayed Nathan as a veritable terror ("screams during play or nap time . . . writes on table . . . reported for throwing food . . . flooded the bathroom area . . . runs around the classroom . . . does his own thing"). The authorities argued he belonged in a secluded TMH environment, though they acknowledged he could benefit from some contact with normal students at lunch and in art and music classes.
Under Cohen's direction the Carters sought an impartial due-process hearing, and while awaiting that the school district was required to keep Nathan in the regular kindergarten. His mother, Julie Carter, regularly accompanied him to school and acted as an aide in the class, yet he was home for many days that year because of a chronic ear infection.
After reviewing the evidence, the due-process-hearing officer ruled last August that the district had "violated Nathan Carter's rights." The TMH recommendation, said the officer, was based almost entirely on Nathan's activities during the first week of school and ignored the progress he'd made after. Moreover, a number of teacher reports favorable to Nathan had apparently somehow been "lost" or removed from his file. In addition, there was the district's repeated contention that Nathan needed to be "grouped homogeneously" with others in his TMH category. That argument, said the officer, flew in the face of federal and state guidelines that say students shall not be simply lumped according to category. In the end the district agreed to keep Nathan in the neighborhood school for the 1992-1993 school year and to provide him with an aide. The verdict was covered in the Peoria press, since it represented the first time parents there had ever won a due-process hearing.
Nathan spent the entire last year in a regular first-grade class and in May was featured in a front-page story in the Peoria Journal Star. He was the first special-ed child to complete a full year in a regular Peoria classroom. According to his teachers and school officials, Nathan "fit in well" and made remarkable progress in talking, reading, math, and social skills. His parents called it "the best year in his life." The extra aide cost the district $13,000, but one teacher who marveled at Nathan's achievement declared that was a bargain. "As he gets older he won't need so much help," she said. "Society has to decide where to put its money. Is it spent early in a child's life to enable him to be productive, or later on to institutionalize him?"
Julie Carter says the happy outcome would have been impossible without Cohen's legal guidance. "When you go up against a school board you're supposed to assume the playing field is even," she says. "Well it isn't, and without good attorneys you won't win."
Cohen says, "Schools are the most important social agent we have. No other change agent is so powerful. When teachers are prepared for diversity, when they work in collaboration, when progress is measured individually and not at some fixed rate, amazing things can happen." The temptation, he adds, is to concur with all this in theory yet say it can't really happen because too much adjustment is required.
Ed McManus is a wiry man with an Irish face and a jutting, determined chin. A former Chicago Tribune editor and one-time press secretary for former Cook County state's attorney Cecil Partee, he's now an attorney. He and his wife Ellen, a warm, soft-spoken woman who advises young mothers on breast-feeding techniques, live in the Wilmette farmhouse where he was raised. They have a 26-year-old son, a 17-year-old daughter, and a 12-year-old daughter. The middle child, Laura, has been their major preoccupation for most of her life.
When Laura was born she seemed a normal eight-pound baby, but her parents sought a complete neurological evaluation at 18 months because she wasn't walking or showing other signs of normal development. The diagnosis was devastating. "We were told she had suffered an insult to her brain early in fetal development, probably due to a virus," says Ellen. "She had cerebral palsy and profound mental retardation." The experts said she would never talk, walk, or learn more than basic feeding skills.
The McManuses had few expectations when the three-year-old Laura began attending the Stratford School in Highland Park, a facility for disabled children run by the North Shore Special Education District, a cooperative of some 20 suburban school districts. "We were satisfied with the services," says Ed. "They helped with her motor skills, but there wasn't much focus on intellectual development."
When Laura was ten, friends advised Ed and Ellen to place her in a residential home; she was getting too heavy to carry around, and if she wasn't placed soon she might never be accepted. So Laura was moved to a home for the profoundly disabled in Wheaton. As part of the program there the children attended special-education classes at a local school, which promoted some interaction with normal children.
"When I went there and saw what was happening I couldn't believe it," says Ellen. "The kids treated Laura like a mascot. They all wanted to push her wheelchair to the gym, they tried to teach her to throw the ball, one would take her hand so she could turn the jump rope, kids would be coming down the hall giving her high fives. And she was laughing and smiling and so alert like I'd never seen her before. It was like magic."
For the first time Ed and Ellen began to believe Laura might be able to function in a regular school setting. "When we saw the difference that contact made I think we were totally converted," says Ed.
In 1989, when Laura was 13, she returned home, and her parents tried to get her into an inclusive program--with aides and other supports--at the local Wilmette junior high. District authorities looked at her records and said that would be out of the question; the most suitable place for her was the Stratford School she'd previously attended. The McManuses sought mediation, and a mainstreaming compromise was agreed on at least temporarily: Laura would attend classes at Stratford most of the day, then be bused back to Wilmette Junior High in the afternoon for physical ed and ceramics class.
In 1990 another mediation hearing resolved nothing. This time the district offered to place Laura in special-ed classes at Northwood Junior High in Highland Park. Ed and Ellen held out for Wilmette. A due-process hearing was convened, and after 20 hours of testimony the hearing officer ruled that the district's "proposed placement [at Northwood] is not appropriate and directly related to Laura's needs . . . and is contrary to the least restricted environment requirement of federal law." The officer cited the Illinois School Code, which declares, "To the maximum extent appropriate, handicapped children . . . are educated with children who are not handicapped, and . . . special classes, separate schooling, or other removal of handicapped children from the regular educational environment occurs only when the nature or severity of the handicap is such that regular classes with the use of supplementary aids and services cannot be achieved."
The hearing officer added, "The district presented no evidence to suggest that Laura was disruptive to other students. Cost, administrative inconvenience and inadequate staff are no excuse for restrictions of the least restrictive consideration. Though some courts have taken cost into consideration, cost is not a significant factor in District 39."
It seemed Laura would at last go to the Wilmette school full-time, but the district appealed the decision. While the legal discussions continued, Laura spent seventh grade dividing her time between Stratford and Wilmette. In June 1991 a second due-process hearing was held, and the presiding officer overturned the first ruling, determining that Laura did indeed belong at Northwood Junior High in a special-ed program and not at Wilmette.
Undeterred, the McManuses immediately filed suit in federal court, which froze Laura at Stratford and Wilmette for eighth grade. In June 1992 16-year-old Laura was among the graduates at Wilmette Junior High. And it was her father Ed, who had recently been elected to the district school board, who handed her her diploma as she was wheeled across the stage amid much applause. But her graduation rendered the lawsuit moot, since she was no longer the responsibility of the elementary school district. This past year most of her classes were at New Trier High School, and her final arrangement there is being worked out.
The amount of money spent on legal fees by the McManus family and the district was high, as was the cost of special aides, services, and daily transportation for Laura for four years. Ed insists the money was well spent despite the unsatisfactory conclusion to the case. Laura got at least a part of her education at her local school among nondisabled friends and neighbors. More important, she's shown surprising gains in understanding and communication. Some of this has come about through "facilitated communication," a method that allows her, with someone steadying her hand, to type out messages on a specially designed keyboard. Though she has never managed to speak more than a few consecutive words, she has on occasion typed out whole sentences on the keyboard. Early on she wrote, "I am basically mad at my school because they find me retarded."
Meanwhile, Ed has become a missionary on behalf of the severely disabled, forming the Family Support Network to educate parents about their rights and serving as cochair of the Coalition on School Inclusion, which he and other parents formed. "We were a lot like the blacks who simply accepted segregation for so long because they didn't know any different," he says. "But when they saw how things could be different, ought to be different, they demanded their rights. That's what we're doing here. Just think of the amount of money spent creating and maintaining segregated environments so people can live isolated, unproductive lives. It's a scandal. I think by standing up for what we believe we may inspire others to take on the institution."
The resistance met by the Carters in Peoria and the McManuses in Wilmette is not exceptional--at least not in Illinois. According to the U.S. Department of Education, Illinois has an abysmal record for providing even minimal integration for disabled children. In 1990 it ranked 48th among the states for integrating youngsters with cognitive disabilities, 48th for children with physical disabilities, and 45th for children with emotional problems. Arc, a national organization (formerly the Association for Retarded Citizens), has named Illinois to its "Hall of Shame."
In June 1992 a class-action federal suit was filed against the Chicago and Illinois boards of education, claiming that children with disabilities are routinely and illegally placed in needlessly restrictive settings. Its charges are based largely on research by Designs for Change, the Chicago-based educational-reform organization. The suit declared that many of the city's 40,000 disabled youngsters are bused long distances without reason, that many with only slight problems are kept in self-contained classrooms, and that some with substantial difficulties are "dumped" in regular classrooms, their teachers never given the support they need. Meanwhile, the suit asserts, Chicago's 3,000 special-education teachers are concentrated in a small number of schools instead of being dispersed through the system. One of the plaintiffs described in the suit is Corey H., a 13-year-old boy who for the past two years has had a 90-minute bus ride from his home to a school in Oak Forest that has a separate classroom for children with communication disorders; only during lunch and gym does he mix with nondisabled children. The plaintiffs called for an overhaul of the placement procedures and the appointment of a "special master" to monitor the school board's compliance. The case has yet to come to trial.
The move toward integration and inclusion has aroused more than a few critics: parents who fear exposing their children to a hostile, unsympathetic world; teachers worried about the disruptive potential of troubled students in their classrooms; private-school administrators concerned about the imminent extinction of their institutions; school-board members terrified by the heavy cost of an effective, fully inclusive program.
No one is more articulate on behalf of these assorted publics than Charlotte Des Jardins, founder and director of the Family Resource Center on Disabilities. "Don't get me wrong," she says, "I support the concept of inclusion, but I've been involved in this issue for 25 years and I know what's really going on."
Des Jardins is a short, peppy, nonstop talker who's been training parents to be assertive since the mid-60s. Originally from Maine (she calls herself a "transplanted Mainiac"), she moved to Hyde Park with her husband in 1954; she helped start a small, private school for emotionally disturbed children after a neighbor's schizophrenic son was rejected by the Chicago public school system. She read Saul Alinsky's Rules for Radicals and became convinced that ordinary citizens could defeat massive bureaucracies through imaginative organizational tactics. She's the author of two self-help books: How to Get Services by Being Assertive and How to Organize an Effective Parent/Advocacy Group and Move Bureaucracies. Her Family Resources operation is federally funded as a training center for parent groups and has organized mass mailings, telephone trees, and huge rallies; in 1988, for example, it crammed 200 vocal demonstrators into a Chicago Board of Education meeting when funds for the summer program for disabled children were in jeopardy. The center currently has nine full-time employees and a suite of offices on East Jackson. Des Jardins's personal office is so awash in papers, reports, and center literature that she prefers to hold interviews in an outer office.
Her major preoccupation in recent months is a 44-page report by a study group of the National Association of School Boards of Education that maps out in some detail how inclusion is to be transformed from a concept to a reality. The report is titled Winners All.
"I say, 'Stop right there,'" she declares. "What do they mean, 'winners all'? The report doesn't deal with parents or parent rights. It says they are to be consulted, but that's not what's happening."
Her office is "barraged" (20 to 30 calls a day, she says) by complaints from parents of Illinois students who have been "dumped" into regular classrooms while their preferences were neither sought nor respected. As she sees it, the problem is not, as Matthew Cohen and other inclusionists see it, stubborn school bureaucracies dragging their feet, but reckless bureaucracies jumping on the bandwagon without plan or foresight.
Des Jardins points to the "cross-categorical" classrooms, some 140 of which have been set up in Chicago schools. These classes, which contain children with a variety of mental or emotional disorders, are supposed to be a transitional step toward integrating the students in regular classes. "You just can't have all those kids in there together," she says. "A child with an emotional problem or an attention deficit who is depressed, withdrawn, maybe suicidal does not belong in a room with someone who has a behavior disorder, who could be violent and aggressive. They don't belong together and never will." In some instances, she adds, extra aides or special-education teachers are added to a school where integration efforts are under way, only later to be pulled out or used for other purposes by principals. "If a child is seriously hurt or hangs himself, maybe then people will realize there's a crisis."
Lending some foundation to these allegations was a five-part series in the Chicago Tribune in March and April. Reporter David Jackson claimed that Chicago is "mainstreaming children on a massive scale," with some 22,000 disabled already placed in regular classrooms and more being shifted daily. He noted ominously that 78 percent of these children "have cognitive and emotional handicaps, most of them fueled by the confounding effects of domestic violence, drug abuse, neglect, poverty and other social ills that leave them unable to pay attention, stick with schoolwork or control violent urges." Jackson also claimed that some children are deliberately labeled inaccurately to justify their transfer from segregated settings into neighborhood schools. He quoted a principal who declared that integration and inclusion are "setting everyone up for failure" and a teacher who said it's "getting harder to teach now than ever."
In Des Jardins's opinion, this rush to inclusion is powered by a crass desire to save money, and she points to Winners All for proof. The report calls for school districts to adopt an inclusive financing system, in which funds are not earmarked separately for special and regular education, as they are at present. Flat funding, says the report, would discourage labeling and give districts greater opportunity for creativity and flexibility.
Says Des Jardins, "What do you think would happen in Chicago if the special-ed funds were commingled with the regular funds? The board of education would use that money in a minute to avoid a teacher strike in the fall. Every time there's ever been a crunch the board has tried to latch on to special-education money. Budget constraints dictate how policies are implemented, and that's the bottom line."
Des Jardins knows all about "least restricted environment," "appropriate education," and the other ideals of the inclusion movement, but her pessimism remains hard-edged. In recent months her organizational work has been directed against a policy statement of the Illinois State Board of Education that was first proposed in March but has yet to be voted on. It states that the board "believes that children belong together, regardless of ability or disability. To separate children out from their peers for any reason is inappropriate, unless it is individually advantageous for that student for the delivery of appropriate instruction." It's the phrase "to separate children . . . for any reason is inappropriate" that alarms Des Jardins; she fears it will be widely quoted out of context to justify all kinds of arbitrary placements. During state-sponsored public hearings in April and June Des Jardins and many who share her concerns called the policy dangerously flawed and suggested it virtually ignores the original federal legislation, which recognizes a permanent need for "a continuum of alternative placements" for children who don't belong in regular classrooms.
But Rene Christensen Leininger, director of the Illinois Planning Council on Developmental Disabilities, says Des Jardins is letting her imagination run away with her. "Charlotte looks into her crystal ball and knows exactly what's going to happen. We've had for years a system that separates children, and it doesn't work. Why are people spending all this energy and time to preserve it? The board's proposed policy calls for each child to be evaluated individually--with parental input--and placed where it is most advantageous to the child's needs. Why not let the board establish that policy and then hold them to it?" She says mistakes will be made and some people will be badly served, "but we can't hold the children hostage until the system is perfect."
Charlene Green, since last January the interim associate superintendent for special education and pupil support services for Chicago's public schools, also deplores the negativism she hears. Her predecessor, Dr. Thomas Hehir, oversaw a wide range of integration and inclusion activities in the schools--activities mandated in part by the settlement of a federal suit charging Chicago authorities with neglecting disabled students. Regularly attacked from one side for going too fast and from the other for going too slow, Hehir resigned at the end of 1992 to take a job with an educational-research firm in Boston.
"Any time people perceive their rights are being overlooked, you have a volatile situation," says Green. "I understand what's going on here. I worked as a special-education teacher [in Indianapolis], and I resisted change at first because I wanted to protect the kids. But I came to see that isolating children doesn't challenge them or prepare them for life in the world. I tell you I can get pretty passionate about this subject."
The Tribune series, she says, was inaccurate and misleading. "We're not dumping kids into classrooms, and we're not closing down all the separate special-ed classes. We're trying to start with children and make decisions individually." Jackson's portrait of large numbers of misplaced students running amok in the schools was "inflammatory," she says, because he didn't note that 63 percent of those placed in regular classes have "mild or moderate disabilities" and are in no way disruptive; only 5 percent are considered to have serious emotional problems, and they're integrated with regular students only for brief periods. She adds that there's no foundation to the charge that inclusion is being used as a money-saving scheme or that Chicago plans to mingle special-ed and regular funds. Whatever the level of integration, she insists, students are receiving and will continue to receive the same amount of special services they've had in the past.
Green does acknowledge that many administrators and teachers have yet to embrace the inclusive vision. Grants of $5,000 are available to schools to help purchase support equipment and to free teachers for conferences and workshops on inclusion. Last year only 20 schools applied for the funds; this year 37 applied. To work, Green says, the inclusive spirit has got to penetrate the whole school, which may take five to seven years. "I know it can work," she says. "I've seen it work. What I'm talking about is already happening."
Najla Samrah arrives at Solomon Elementary School at 9 AM and goes to her class in Room 106. She's a tiny seven-year-old, the smallest in her first-grade class. She wears a lavender pantsuit with matching lavender barrettes on her long black pigtails, and she peeps out at the world shyly from behind large glasses. Najla, who spent the entire first year of her life in Children's Memorial Hospital, has undergone eight major operations, the last to correct a congenital heart murmur. She has severe intestinal problems and chronic rheumatoid arthritis in her knees, elbows, and hips. On many days she can only get around in a wheelchair. But today is a good day, and she walks stiff-legged through the hall. Najla has been classified as "educable mentally handicapped" (EMH) as well as physically disabled.
For kindergarten she was enrolled in a special-education school. Her mother, Yusra Samrah, a Palestinian who came with her family to the United States from Jerusalem, says Najla was always treated as "someone special" at her former school. "They would meet her at the door every day, put her in a wheelchair or help her walk, and get her whatever she needed. They even brought lunch to her classroom."
This year Najla has been in an inclusive program at Solomon, a multiracial, multiethnic--blacks, whites, Indians, Hispanics, Arabs--K-8 school in Chicago's North Park community. Of the school's 385 children, 95 are special-ed students, most of whom are enrolled in five EMH or TMH ("trainable mentally handicapped") classrooms; but 20, including Najla, have been assigned full-time to regular classrooms.
In the morning Najla's class breaks up for specialized reading programs based on individual needs. Najla and two of her classmates join four other students who cluster in a partitioned area at the rear of another classroom. Najla more than holds her own as her teacher, Monica Clemons, uses flash cards to test the students' ability to identify words. And she has few problems when Clemons spreads the cards on a table and asks her to find certain words and arrange them into the sentence "Look at the boy jump." In fact, her performance is on a par with that of the regular students in her reading group. The session continues with word bingo, and Najla remains in good form, patiently covering the appropriate squares on her card as the words are called out.
Afterward she returns to her homeroom and then accompanies the entire class to the computer center. Each child sits at a machine while the instructor explains how to make colored designs on the screen. Most of the class quickly gets to work, but Najla didn't quite get the part about opening up the program. She sits very still until the girl sitting at the machine next to her notices her plight. Without saying a word, the girl leans over and pushes several keys on Najla's keyboard. Najla takes it from there and produces a surreal multicolored design.
Just before lunch the boys in the class go outside for recess, while the girls trek to the gym for cheerleading practice. Najla, who throughout the day displays a penchant for holding brief, very intimate conversations with those around her, is the last to get her pom-poms from the bin in the corner, and she's the only one to keep her coat on as the girls gyrate through various jumps, punches, and chicken wings while shouting, "Hey, get up, it's time to cheer--Solomon School is here!" No one suggests she sit this one out because of her arthritis, and she does the best she can, appearing for the most part no more uncoordinated or clueless than many of her fellow first-graders.
During the lunch break Solomon principal Sarah Schwarcz explains that she's been working for five years to move the school in the direction of effective integration and inclusion. "We've brought in speakers, we've sent the teachers out for training, we've worked to get aides and equipment, we've tried to get everyone working together as a team." But she says there's no rush to dump unprepared kids into classrooms. Last year 14 special-ed students were fully included, this year there were 20, and next year there may be as many as 30.
Schwarcz's pride in her school is palpable, and it's reflected in the response she gets as she cruises the halls. She calls virtually every child by name, greets staff like they're part of her family, and points out "remarkable" student artwork on the walls.
Assistant principal Catherine Smith tells of one nine-year-old EMH boy who was placed in the inclusive program this year though the staff had considerable misgivings. She says he'd been acting out in his special-ed class, throwing fits and making himself generally obnoxious, but after four weeks in the regular class he changed completely. "It had to be the placement with normal kids that made the difference. Nothing else had changed."
Special-education counselor Julienne Williams speaks of a nine-year-old EMH girl who'd been silent and virtually autistic in her special-ed class but who made a "360-degree turn" in an inclusive setting. "We all said she's not going to make it," says Williams, laughing, "but she is making it. She fits."
Only two students this year had to be returned to their special-ed rooms for failing to adjust. Some teachers have also had rough going, says Schwarcz, because they lacked skills or support. "Nobody fits in a box," she says. "We're all different."
After lunch Najla spends a math period in a small classroom with six other children. It's the only time in the day when she's with exclusively special-ed students. To help the children learn to tell time, teacher Ann Forde is using another bingo format. Perhaps it's the extra energy provided by lunch or the mix of kids in the room, but Forde's skills are sorely tested as her students hum, talk, and push. One falls out of his chair and crashes on the floor with a thud. Najla doesn't participate in any of the high jinks, but her attention wavers. She looks tired at the end of the period and asks to use the bathroom. Her legs ache a bit, she says. Her walk has turned into something of a waddle. But she emerges from the bathroom with a large grin; somehow she's acquired a cricket clicker, and she clicks all the way back to the homeroom.
"Put that thing in your desk and keep it there, Najla," says her teacher, Denise Edelson, who has five of the "included" contingent among her 20 students. Edelson is a relaxed, somewhat rumpled classroom veteran who apparently thrives on a degree of creative disorder. Hands-on projects abound, the configuration of desks and chairs is constantly changing, curiosity is encouraged, and considerable attention is given to a tank of tadpoles in the back of the room. When Edelson reads a story titled No Ducks in Our Bathtub, which concerns tadpoles and frogs, she peppers her narration with questions about the meaning of words like "inseparable" and "imagination" and about the difference between an aquarium and a terrarium. Hands fly up, and intriguing answers bounce around the room. The level of engagement in the period is in marked contrast with that in the special-ed period earlier, and Najla appears to be absorbing some of it, though she raises her hand only tentatively.
While Edelson gives detailed instructions on drawing the tadpole tank, Najla socializes with a classmate; she needs help getting started. Edelson helps, and another student, without prompting, erases a mark Najla has made on her paper and hands her back her pencil. Najla smiles a thank-you. She's the last to finish, and Edelson declares her drawing quite satisfactory, though Najla has tripled the number of tadpoles.
"She's fine," Edelson says later, displaying a workbook on butterflies Najla produced earlier in the year. "She just works at her own pace."
Yusra Samrah is delighted with her daughter's progress. "She's happier now. She's more active and independent, even does her homework without help."
Art accompanying story in printed newspaper (not available in this archive): illustration/Kurt Mitchell.