The Academics of Inclusion

Published in Wabi Sabi Magazine (available on iPad) | Written in October 2011

Angela Swanson has a college degree and a disability.

Angela is described as having the intellect of a bright, young woman and the motor skills of a small child who cannot walk.

Angela is a sister, a daughter, a fiancée, a friend, a roommate, an enigma.

Angela was born with cerebral palsy, a disability that caused severe impairment to her motor function but left her cognitive function untouched. It is a “mind-boggle” of a disability, says her father, Jeffrey Swanson of Chapel Hill, N.C. While her motor functions have been damaged, hindering her ability to move and speak easily, she is extremely intelligent. Her condition is a riddle that pervades every aspect of her life.

However, despite her puzzling state, she remains optimistic.

“Sometimes I felt isolated. Sometimes I still do. But most of the time, I’ve been lucky,” Angela says. “Life is just my riddle to solve.”

For one, she has certainly “solved the riddle” of her long-distance relationship with fiancé, Alexander, whom she met at St. Andrews Presbyterian College. Although he lives in Washington, D.C., Angela talks to him on the phone every night and is able to visit him at least once a month with assistance from her parents.

Alexander has muscular dystrophy, a degenerative disability that may have crippled his body but has not affected his love for Angela.

“He [Alexander] is the love of her life,” Swanson says. “It doesn’t matter that either of them is disabled — all that matters is they are happy.”

Angela’s cerebral palsy has not prevented her from living a happy and successful life. The challenges her disability imposes aren’t about the decision of whether to allow her to participate in day-to-day activities; they are about how to enable this participation.

“I had to ask myself with every decision I made, ‘How do I include her?’” says Swanson, a professor in psychiatry and behavioral sciences at Duke University. “How can I help her meet her full potential?”

To Swanson, this question was especially relevant when it came to Angela’s education. Because she is intellectually able, she could not be educated in a special education, self-contained classroom, where students typically have severe learning disabilities and are enrolled in small numbers. She didn’t need to take decelerated learning classes. She could not be included in a generic special education program. There was only one choice: She had to be mainstreamed into the Chapel Hill-Carrboro City Schools in Chapel Hill, N.C., with an individualized personal care assistant.

Swanson and his daughter met with the disability services director in the Chapel Hill-Carrboro school system, who helped guide Swanson’s decision to mainstream his daughter.

“He was impressed by Angela because she is so sharp,” Swanson says. “He [the disability services director] says usually kids who are in the local special education services have disabilities that affect both physical and intellectual deeds.”

Angela’s will and wit fueled her achievement in high school and ultimately propelled her to obtain a bachelor’s degree from St. Andrews Presbyterian College in Laurinburg, N.C. As his daughter drove her powered wheelchair across the graduation stage in May 2008, Swanson says he was overwhelmed with pride. She had met her academic potential — defying her disability and graduating with honors — and represented a success story for everyone with special needs.

The issue over mainstreaming an individual with a special need is a hotly disputed debate within the special needs community. Oftentimes, mainstream teachers are not trained to teach a child with a disability, the school is not equipped with proper funding to support students’ needs and peer-to-peer interaction is awkward and intolerant.

However, because mainstreaming is easier and cheaper than alternative options, including at-home tutors, private schools and smaller, self-contained classrooms designed for children with a severe learning disability and/or behavioral problems, it is the “go to” option for most public schools.

The bureaucracy behind academic decisions made about the placement of children with special needs is complex. To some families, it is a straitjacket that leaves their children trapped on a path predetermined by school systems. Fortunately, Swanson is happy with the decision to mainstream his daughter.

In compliance with the U.S. Individuals with Disabilities Education Act, schools are forced to incorporate the least restrictive environment (LRE), which provides free, appropriate, unrestrictive, public education to individuals. Many times, this LRE comes in the form of an individualized education program (IEP).

Lois Miller, executive assistant to the director of The La Grange Area Department of Special Education (LADSE), says an IEP is the best way to ensure fair treatment of an individual with special needs in school. LADSE is a government-funded cooperative in La Grange, Ill., that works with schools to specially design IEPs. To achieve an IEP, she says, a team of parents, teachers, school administrators, LADSE representatives — and potentially psychologists and physical, speech or occupational therapists — complete an evaluation of a child, based on observation and testing.

From here, the child receives an IEP and is mainstreamed into public schooling. Success is achieved, right? Not exactly.

Although an IEP sounds like a foolproof plan, it is highly criticized by some psychiatrists, social scientists and parents. This is because in most cases, in order to receive an IEP, a child with special needs is given a label.

Although Angela’s label, cerebral palsy, was accurate, Swanson says it affected her peer interaction. Sometimes, he says, she was defined by her disability and isolated by her peers. However, he believes that her classmates grew to be sensitive and tolerant of her special needs.

“Tolerance is something special that you can’t teach in a textbook,” Swanson says. “It needs to be generated from experience.”

Labels, which define a child by a concrete disability, delve into dangerous waters, says social scientist Sue Estroff, Ph.D. They may be permanent. They enable skepticism. And they emphasize difference.

It is quite the conundrum to Estroff, who teaches a seminar about difference at the University of North Carolina at Chapel Hill.

“Nobody wants to be labeled with a disability,” she says. “But if you want help, you need a label.”

In order to receive any sort of scholarship or special treatment, usually in the form of an IEP, an individual has to “come out.” By accepting a label, a person is forfeiting his or her individuality to society’s predetermined definitions. This leaves a person vulnerable to isolation and discrimination because a label means he or she has a concrete disability that, by default, is associated with difference in society’s eyes.

So, children with special needs are faced with a difficult choice: to be isolated from public schooling by not accepting a label and therefore not having an IEP, or to be isolated from society by accepting a label, an ensuing IEP and the connotation of difference.

It seems to be an inescapable cycle, in which a person with special needs will forever be treated unfairly. If a person decides to embrace a label in order to achieve a fair education, Estroff questions the process of determining who can receive one.

“Who is seen as deserving?” she asks.

She calls the process of granting labels to children a “can’t v. won’t” situation. In her opinion, if a child can’t do something, he or she will get help in the form of a label and IEP.

“But if there’s just a hint of ‘won’t,’ the child is in trouble,” she says. “That’s when he or she may not get the help needed.”

She adds that some disabilities, including fibromyalgia, Crohn’s disease, migraines and chronic fatigue syndrome, have conditions that are debilitating but not often visible. In an article published on Sept. 17, 2011, “Wave of New Disabilities Swamps School Budgets,” The Wall Street Journal writer Amy Dockser Marcus highlights the disadvantages “hidden diseases” pose on those who have them. For example, when a student has chronic fatigue syndrome and cannot participate in gym or make it to a 10 a.m. math class, it doesn’t mean he or she “won’t” do something — he or she physically can’t.

Taking Estroff’s “can’t v. won’t” debate into consideration, does this mean this student isn’t worthy of a label and the resulting help? Estroff criticizes the public school system for its method of labeling in order to give a child help and for its determination of granting help.

Besides these inconveniences, labeling a child in order to give appropriate education presents additional problems. Dr. Sucheta Connolly says that unnecessary and unfair labeling has caused an over diagnosis of disability and, in some cases, prescription medicine. As the director of the University of Illinois at Chicago Pediatric Stress and Anxiety Disorders Clinic, she has evaluated many children with the intention of prescribing medication and has found that some of these children do not actually need medicine.

“In our society, there is emphasis on the connection between disability and prescription medicine,” she says. “Medicine isn’t the ‘easy fix.’”

In fact, she says, it’s dangerous. If a kid has been labeled as having a specific disability, many times, treatment for this disability includes the prescription of medicine. But if this individual doesn’t need the medicine, it could have serious side effects. Connolly says, for example, that the label and misdiagnosis of attention deficit hyperactivity disorder could mean the misdiagnosis of ADHD medicine, which could cause serious health problems.

“In order to appropriately diagnose a child with a disability, I look at the severity of symptoms and monitor the child very closely,” Connolly says. “I would never prescribe unwarranted medicine. I am a strict diagnostician who believes the risks outweigh the benefits.”

While Estroff, Connolly and others criticize labeling a child to achieve mainstream education, proponents of such labeling, like North Carolina’s Treatment and Education of Autistic and Communication-Related Handicapped Children (TEACCH) clinical director Mary Van Bourgondien, Ph.D., argue that if a label gets individuals services they need, then labels must be good.

“It isn’t the labels themselves that stigmatize,” she says. “Children [with special needs] are stigmatized when they are in a setting where they are failing or acting unusual.”

Van Bourgondien also says that some teachers are, in fact, trained to work with children with special needs, and labels help to determine appropriate placement in classrooms. Although TEACCH is an organization with a focus on the education of parents, she says there are classrooms that use the TEACCH approach. In these classrooms, teachers have been taught intervention strategies specifically designed for autistic individuals, an approach called Structured Teaching.

“This approach allows the teacher to understand where the child is coming from and understand that a child may not be doing something willfully or purposefully — it’s an empowering approach,” Van Bourgondien says.

However, this approach mainly exists in classrooms that are self-contained, and therefore have a more restrictive environment. Van Bourgondien says it is hard to educate an autistic child otherwise, because no classroom exists for all people on the spectrum. Autism can cause severe to mild learning disability, average intelligence or brilliance in affected individuals. But because it is such a broad spectrum, most teachers are unequipped to properly understand and teach autistic individuals. The goal is to ultimately be able to train teachers in both self-contained, special education classrooms and mainstream classrooms so they can understand all children with special needs.

Because this goal is slightly utopian, TEACCH’s main focus is parents. TEACCH centers provide parents with education about understanding their child’s particular learning style and how to use their strengths to learn social skills at home. TEACCH then encourages parents to talk to teachers and employers to develop these skills at school and in the workplace.

“We teach parents how to be their child’s advocate,” Van Bourgondien says.

In addition to parent-focused approaches, IEPs and self-contained classrooms, other resources exist for children with special needs. Other options include small, transition schools, such as Springer School and Center in Cincinnati. Center program coordinator Mary Ann Mulcahey, Ph.D., says Springer is an attractive option for parents of children with special needs because it provides specialized services that a child needs under one roof, takes place between 8:30 a.m. and 3 p.m. and serves as a transition school between district and private schools, altogether reducing stress on the family.

“Our students leave knowing HOW to learn, not just how to get the work done,” Mulcahey says.

Because so many educational resources are available for children with special needs, it was comforting to Swanson to know that Angela would achieve an education. He says that, as a parent, he feels the struggles she faces. He often worries about Angela being included, being treated fairly and living to her maximum potential. But he says the wide selection of educational opportunities ensured that Angela had a successful school experience.

“You’d think disability implies she would be a ghost of herself,” Swanson says. “But Angela isn’t that ghost. She is who she is — she’s a beautiful young woman who has graduated college, is engaged and is living on her own.”

Although Angela may not be normal by societal definition, there is nothing wrong with that. And, Swanson says, she is certainly not just defined by her cerebral palsy. Her disability is a part of her but does not make her who she is.

Instead, Swanson has a different spin on disability.

“I like to think that we are all disabled,” he says. “Differently abled.”

BLINDING INSIGHTS

Interested in learning more about what it means to have a physical handicap? Professor Jeffrey Swanson’s YouTube show, “Blinding Insights,” tackles what it means to have a physical handicap on the episode, “Musically Impaired.” He plays four, goofy characters who interview his daughter, Angela, and her friend, Lola Victor-Pujebet from France about their personal experiences with disability and the unique friendship they have established through Skype.

In Angela’s opinion, the show is “edgy” and says things that other people wouldn’t say in a less ridiculous context. She pokes fun at her father’s characters but says “Blinding Insights” is on the list of her favorite shows.

Check it out at http://www.youtube.com/user/capitanswan#p/a/u/2/fuDYn-1QDA4.