What is normal?

The Enterprise — Melissa Hale-Spencer

Michael Puzio’s classmates wait for him to compose his thoughts.

Michael Puzio is an inspiration. He’s a bright boy, learning and growing — despite having cerebral palsy — in a school where people care about him.

His third-grade teacher said the Guilderland School District was courageous to take him from a self-contained classroom where he was frustrated to place him in a regular classroom — hers.

His teacher this year, for fourth grade, said, “Michael is just trapped inside that body. He is just like everyone else. He wants everyone to know he doesn’t want to be in a wheelchair or to wear a helmet.” She spoke of how perceptive Michael is. “He doesn’t just hear what I say; he sees my body language,” she said.

His father likened the device Michael uses to talk — pointing to symbols that create speech — to that used by the world-famous physicist and cosmologist, Stephen Hawking.

Hawking said he wants to be known as “a scientist first, popular science writer second, and, in all the ways that matter, a normal human being with the same desires, drives, dreams, and ambitions as the next person.”

We don’t know who Michael Puzio will grow up to be — he just turned 10 — but we can understand his desire, as expressed by his teacher, to be understood as “just like everyone else.”

Michael Puzio, Stephen Hawking, all of us, share a common humanity.

We worked in our youth, in the 1960s, at a camp for the developmentally disabled in Brookfield, Vermont. One summer, we comforted a terrified camper, frightened because no one had told her about menstruation, and she was bleeding. When we explained that this was a normal part of growing up, she seized on the word “normal” — having always felt so different — with great delight, brandishing her bloodied napkin for all to see.

As a society, we’ve come a long way from that era — one that segregated children with disabilities in a state institution. Some people spent their entire lives at the Brendon Training School in Vermont because their families or communities didn’t know what to do with them.

Eventually, parents pressed for changes as a matter of civil rights. In 1975, the Education for All Handicapped Children Act was passed, mandating that all children, regardless of disability, had the right to a free, appropriate education in the least restrictive environment. Public schools across the country set up self-contained classrooms and resource rooms to educate students with disabilities.

Just over a decade later, Madeleine Will, who was then the assistant secretary for the federal Office of Special Education and Rehabilitative Services, produced a report describing unintended problems with special-education pull-out programs, advocating instead educating mildly and moderately disabled students in the mainstream of regular education.

That same year, 1986, the National Council on Disability recommended an Americans with Disabilities Act, finally passed in 1990, a wide-ranging civil rights law prohibiting discrimination based on disability and requiring changes — some as basic as ramps to access public buildings — that would force an end to segregation.

Those with disabilities are no longer contained in institutions or in their homes; they are, as they should be, an integral part of American society. Or are they?

Just 35 percent of students with disabilities are attending school in regular classes, according to the United States Department of Education’s annual report on the Individuals with Disabilities Education Act, or IDEA, as the 1975 act was renamed. Of the other 65 percent, 36 percent receive services in a resource room, 24 percent are in self-contained classrooms, and the others are educated outside regular school settings.

The push that Guilderland is making now and that Michael Puzio is an example of, is inclusion of special-needs students in regular classrooms. Demian Singleton, assistant superintendent for instruction at Guilderland, distinguishes inclusion from the earlier trend of mainstreaming special-needs students in regular classrooms.

Singleton explained, “Every child in a classroom has strengths and weaknesses, disabilities, if you will…That’s acceptable and valued.”

With mainstreaming, he said, a light was shone on the disability. With inclusiveness, “We shift our expectations. We’re not trying to make everyone normal. We shift to a mindset of focusing on what the student can do, not what the student can’t do.”

By all accounts, inclusion has worked well for Michael. His father says, not only is Michael liking school and learning, but he’s made friends, too. Singleton said his classmates have benefited from knowing Michael, and further, he points to research showing that typical students do better academically in classrooms that include special-needs students.

The key to this success, though, lies in the resources and care dedicated to the project. Michael is getting the tech support he needs to use the devices that let him communicate. He is getting the benefit of a social worker’s expertise when he needs it. He has the backing of an enlightened principal who has visited his home and, according to Michael’s father “turned things around.”

Michael also has an aid that works solely with him in the classroom. He has various experts in subjects that push into the classroom to work with him. He has a classroom teacher, both this year and last year, who works with the other students in the class to help them understand and become friends with Michael.

And, all of the professionals working with Michael check in with each other daily, sometimes several times a day, to coordinate in their work.

The danger with any school moving to inclusion is in cutting corners. Over the years, we’ve written heartbreaking stories of mainstreaming that didn’t work.

The money-saving plan in a rural district to bring students back from outside specialized programs, for example, didn’t work for a boy who had Tourette syndrome and was made fun of by his classmates, creating more stress for him, and more outbursts in an ever-escalating cycle. Because the classroom teacher didn’t have the support she needed, the rest of the class suffered, too.

We commend Guilderland for starting on this journey. “It’s complex work; it will take years,” Singleton told us.

He’s right on both counts. Understanding the complexities, which involve transforming an entire system, is wise. Guilderland has long focused on a child-centered approach, where teachers view their role as understanding what their students’ academic and social needs are to help them learn best, rather than just handing down knowledge.

This approach will work well with inclusion, but teachers and other staff will need training and commitment to make it work. They will also need resources. The sort of support, both in time and expertise, that Michael is receiving is costly.

The American Federation of Teachers has said, when inclusion efforts fail, it is often due to “a lack of appropriate training for teachers in mainstream classrooms, ignorance about inclusion among senior-level administrators, and a general lack of funding for resources and training.”

We believe the cost is worth it. The pledge that students begin their school day with is to “one nation… with liberty and justice for all.” It’s inherently unjust that some in the school should be fettered.

The National Association of State Boards of Education reports that 43 percent of students in special education do not graduate and, two years after high school, only 13 percent of youth with disabilities are living independently with less than half of all youth with disabilities being employed after being out of school for two years.

Other than the anguish suffered by those students and their families, this costs us all as a society.

We urge Guilderland and other districts considering inclusion to develop a clear and shared vision of the transformation, to calculate and provide the needed resources and training, to continually evaluate both the successes and failures to add any needed supports, and to create a school culture that supports the transformation.

A tall order. But it will insure that students will feel “normal” in the sense that Hawking used that word — accepted as a human being — but not reduced to norms; rather, each will be able to cultivate the best he or she has to offer the world.

— Melissa Hale-Spencer

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