Isolating kids from their peers is unjust.
In the fall of 2020, as my son and his neighborhood friends started to trickle back out into the world, my daughter, Izzy, stayed home. At the time, Izzy was 3 years old, ripe for the natural learning that comes from being with other kids. I knew by the way she hummed and flapped her hands around children at the playground—and by her frustration with me at home—that she yearned to be among them.
The question of where Izzy would attend school had been vexing me for two years. Izzy had been a happy infant, but she was small for her age and missed every developmental milestone. When she was eight months old, my husband and I learned that she had been born with a rare genetic disorder and would grow up with a range of intellectual and physical disabilities. Doctors were wary of giving us a prognosis; the families I found on Facebook who had children with similar disorders offered more definitive—and doomful—forecasts. When Izzy showed signs of some common manifestations (low muscle tone, lack of verbal communication, feeding troubles) but no signs of others (vision and hearing loss, seizures), I started to lose confidence in other people’s predictions—and to instead look to Izzy as the determinant of her own abilities.
While managing Izzy’s medical care and her therapy regimen, I also started the process of finding her a school in Oakland, California, where we lived at the time. I knew what options weren’t available to her, such as the small family-run preschool in a cozy Craftsman home that my son had attended. Private schools in general have fewer obligations to accommodate students with disabilities—they don’t directly receive government funding and aren’t covered by the federal special-education law that requires the provision of free and appropriate public education. California’s public preschools, at the time reserved largely for low-income families, weren’t an option, either, because our family exceeded the income threshold to qualify.
Read: Grieving the future I imagined for my daughter
Although kids with disabilities are spending more and more time in general classrooms, in the United States, “special” education still often means “separate.” Kids with disabilities rarely receive the same education as their peers without disabilities; commonly—or mostly, in the case of those with intellectual disabilities—they are cordoned off in separate classrooms. The one special-education preschool in Oakland I found that could accommodate Izzy would have sorted her into a siloed classroom for students with heavy support needs. The prospect of her being hidden away from other kids seemed unappealing to me—and unjust. As desperate as I was for Izzy to attend school, I didn’t want that to mean removing her at an early age from the rest of society.
Another approach—placing students with disabilities, with the support they need, into general-education classrooms—is known as inclusive education. If the goal of education is to prepare students for the real world, an inclusive approach makes a lot more sense. “Students educated in segregated settings graduate to inhabit the same society as students without disability,” writes Kate de Bruin, a senior lecturer at Monash University’s School of Curriculum, Teaching and Inclusive Education. “There is no ‘special’ universe into which they graduate.”
In her role training teachers, de Bruin promotes tiered intervention systems where all students are given a base layer of general support, and additional services (small groups, more time, more detailed or focused instruction) are added on for students who require them. (For example, when doing counting activities, my daughter’s teachers and therapists often pair her with another child and incorporate her favorite toys.) Depending on the situation, a specialist might “push in” to the general classroom, sitting alongside a student at her desk to work one-on-one or they might “pull out” and remove the student from the classroom to find a quieter separate space.
There’s a concept in disability studies called “the dilemma of difference.” The legal scholar Martha Minow coined the term in 1985, and discussed it in her book Making All the Difference: Inclusion, Exclusion, and American Law. The issue of whether students with disabilities should be treated as “different” or “the same” underlies many of the mechanics of special education. In both of my kids’ schools, specialists also build relationships with students without disabilities and include them in activities as a way to normalize disability and the basic human need for help. Thoughtful inclusion reinforces a paradox of the human condition: We are all different and the same.
Read: Is the bar too low for special education?
“Inclusion is quality teaching for all kids, designed to make sure that everybody gets access to quality instruction—and then for some kids, it’s intensified,” de Bruin told me.
In 2019, de Bruin published an analysis of 40 years of research on the benefits of inclusive education. She cites more than three dozen studies showing positive outcomes when students with disabilities are included in a classroom setting designed for all children, rather than siloed off for “special” instruction. In an inclusive model, she writes, students with disabilities achieve higher test scores and grade point averages, stronger math and literacy skills, and more developed communication and social skills. Some studies suggest that Individualized Education Programs, road maps for the schooling of students with disabilities, tend to be more ambitious and academically focused in inclusive settings; separate “special” schools (or siloed classrooms within schools) can sometimes resort to a focus on “life skills” instead of curriculum-based goals. Research has indicated that for students with disabilities, an inclusive education can have positive long-term effects on almost every aspect of their lives, including their likelihood of enrolling in college and graduating, finding employment, and forming long-term relationships.
A newer meta-analysis found mixed outcomes for inclusive education. The study doesn’t specify which types of disabilities are better served by inclusion or separate education; it merely states that some children “may benefit from traditional special education in a segregated setting” and that more tailored research is needed. If nothing else, the study’s inconclusive findings serve as a reminder that in my role as Izzy’s parent and advocate, some of the most important decisions I’ll make will rest not on data alone, but also on personal and moral judgments.
Martha Minow and Prof Martha Minow
We know that failing to include students with their peers when they are young can leave them with deep and lasting psychological scars. In her memoir, Easy Beauty, the author Chloé Cooper Jones reckons with the emotional armor she built up over a lifetime of being excluded due to her physical disability, a congenital sacral disorder. “I’d believed completely that it was my nature to exist at a distance, to be essentially, at my core, alone,” she writes. “My body was constantly seen, but this thing I called my ‘self’ was invisible … People make spaces I cannot enter, teaching me how forgotten I am, how excluded I am from ‘real life.’”
Assessing how many U.S. schools are inclusive of students with disabilities is challenging. Sending students with disabilities to the same schools as their peers without disabilities is not the same as inclusion, which is an added layer of services within those general-education schools that allows students with disabilities to attend the same classes. Integrated schools, at least, have become very common—the U.S. Department of Education reported that, in 2020, 95 percent of students with disabilities attended regular schools. That’s considerable progress given that 50 years ago, before Congress codified their right to an education, only one in five children with disabilities attended school, according to the Department of Education; many lived full-time in residential facilities that resembled hospitals and prisons. In one well-known example, children with disabilities were warehoused in a “school” complex notorious for filthy conditions and rampant abuse.
Changes to federal legislation propelled this shift. In 1975, a law now known as the Individuals With Disabilities Education Act (IDEA) made it more difficult for school districts to separate students with disabilities from their peers, which led to a massive increase in the proportion of students with disabilities attending regular schools.
But a federal law like IDEA doesn’t reach into individual classrooms. In 2020, only 66 percent of students with disabilities spent 80 percent or more of their time in general classes; 30 percent spent significant time in segregated classrooms. Inclusion rates plummet for students with intellectual disabilities, just 19 percent of whom spent 80 percent or more of their day in general classes. In 2020, students with disabilities were more than twice as likely as their peers without disabilities to drop out of high school. The lack of a high-school diploma layers on an additional disadvantage: The national employment rate for people with disabilities hovers around 20 percent.
In fairness, inclusive models require resources that not all schools have access to. An inclusive program that provides individual and small-group support for students with disabilities will require more funding to pay a larger staff—a problem, given that well-trained teachers and specialists are becoming harder to find. Since 2010, nationwide enrollment in teacher-preparation programs has decreased by 36 percent, with a handful of states facing declines of 50 percent or more. Laurie VanderPloeg, the former director of the Office of Special Education Programs at the U.S. Department of Education, told me that the pandemic hit special-education teachers and their students especially hard, given the challenges of remote learning. “We have high demand; we simply don’t have a good supply of teachers to develop the effective workforce we need,” VanderPloeg explained, referring to a recent study estimating that at least 163,000 underqualified teachers—long-term substitutes and others without appropriate training—are teaching in U.S. schools.
VanderPloeg believes the shortage could be reduced by de-specializing teacher training. In her vision, all teachers, not just special-education teachers, are equipped with techniques to handle a much wider range of abilities. “What we’ve done in the past is focus on specific disability needs, instead of the teaching practices,” VanderPloeg said. “All teachers need to be trained to address all needs. That’s good teaching.”
Whether due to the teacher shortage or other factors such as dwindling school funding, it’s clear that many families don’t feel that their children with disabilities are getting an appropriate education. During the 2020–21 school year, families in the U.S. filed more than 20,000 IDEA-related complaints against schools, less than half of which were resolved without a legal hearing. In California, the state with the most people (and students), special-education-related disputes rose 85 percent from 2007 to 2017.
But despite funding and staffing challenges, de Bruin and other experts view historical bias as the primary hurdle to inclusion. “The problem we’re dealing with is a very entrenched attitude that these children remain ineducable,” de Bruin told me.
As the pandemic raged on and Izzy’s school search grew more urgent, I began to doubt that I just hadn’t looked hard enough and that an inclusive school would pop up out of nowhere. Stuck at home, Izzy wailed with boredom.
I contacted a special-education advocate who happened to work in New York City. The advocate recommended several schools and programs in the city, including a highly rated program for autistic students, a growing movement of intentionally inclusive classrooms, and a Brooklyn preschool with a 25-year history of integrating children with disabilities into regular classrooms. In all my searching, I hadn’t found any such programs in California.
“Can you move?” the advocate asked. She was serious.
Read: The pandemic is a crisis for students with special needs
California had been the backdrop for my entire adult life. It’s where I built my career, earned a master’s degree, developed deep friendships, met my husband, got married, and had two kids. And in the summer of 2021, my husband and I packed up our Oakland bungalow, stuffed our kids into the minivan, and drove away.
Morning drop-offs at Izzy’s new school in Brooklyn are chaotic: Pedestrians maneuver around parents crouching to hug their toddlers, their goodbyes drowned out by garbage trucks. Izzy’s wheelchair appears, pushed by Alanna, Izzy’s dedicated teacher and aide, whom Izzy greets with a gentle high five. I deposit Izzy into the wheelchair; she kicks her feet in anticipation of the day ahead. She might work on her expressive language by mastering ASL signs for “ready” or “music,” or on her receptive language by learning to recognize signs for body parts—two goals specified in her Individualized Education Program. Like her classmates, Izzy is occasionally expected to perform “helper of the day” duties (sorting the attendance ledger, helping a teacher pull lunch boxes from the fridge), which Alanna modifies so Izzy can do them from her wheelchair. In photos shared by her teachers, I can see from the proud smile on Izzy’s face that she gets satisfaction from helping others.
Alanna’s role is to include Izzy by making adaptations that allow her to participate; in official-speak, this is called “accessing the curriculum.” Recently, Izzy had trouble sitting through a 20-minute art lesson. Alanna gradually increased Izzy’s time in the class by a few minutes each day, moved her materials to a quieter spot in the classroom, and found some thicker oil pastels (which require less strength to hold than standard ones). Alanna also helps other kids relate to Izzy by demystifying her disabilities and framing them in neutral and age-appropriate terms. When they call now-5-year-old Izzy a “baby,” Alanna reminds them that Izzy is their same age with a smaller body. Her friends vie for a turn joining her for collaborative games in speech therapy, or to ride with her in the elevator. During recess, Izzy’s wheelchair is a choice prop for playing “queen”—the lucky throne bearer gets to rule the playground kingdom. I recently got a text from the father of one of Izzy’s classmates, a 5-year-old girl who’d been slithering around at home on her stomach—army-crawling in the way toddlers do before they learn to walk. When her dad asked what she was doing, the girl said, “I’m strong like Izzy.”
Izzy and her friends are different and the same. They have different learning needs, but they share a love of barn animals and ukuleles. Sure, Izzy is unique, rare, one in 10,000. But in an ideal world, no child’s specialness would override their contribution to a shared humanity, or be used to justify their separation from everyone else.
Chloé Cooper Jones
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