When Emilio Bernier was born in May 2016, doctors informed parents Hilda and Olivier that their son had Down syndrome. As a toddler, Emilio received speech, occupational and physical therapy, but finding a preschool that would allow him to study alongside kids who were not disabled proved difficult. The frustrations experienced by the family — including an intransigent bureaucracy led by rigid school administrators — are the subject of Forget Me Not, a full-length feature film directed by Olivier.
Emilio’s story, at least for now, is a relatively happy one: He is enrolled in a general education kindergarten class in a suburban New Jersey public school where he is able to play and learn alongside his peers. He also receives supplemental therapies. Hilda and Olivier describe him as thriving.
But getting Emilio the education he is legally entitled to has been riddled with roadblocks — and he’s far from alone.
Fifteen percent of those enrolled at the start of the 2020-2021 academic year — 7.2 million children — had a diagnosed disability, according to the government-run National Center for Education Statistics. However, unlike children with physical disabilities or those with specific learning disabilities, the majority of whom are integrated into mainstream classrooms for most of the school day, only 19 percent of children with an intellectual or developmental disability (IDD) — kids like Emilio — spend the majority of their day in general ed.
Predictably, this has dire consequences, with just 40 percent of kids with IDD graduating from high school and just 15 percent of the 6.5 million U.S. residents with IDD finding work when they come of age.
This, despite the fact that for the past 47 years, the Individuals with Disabilities Education Act (IDEA) has promised a free appropriate public education at public expense to disabled kids in the least restrictive environment possible.
And herein lies at least one of the sticking points to inclusive education. Although IDEA states that the least restrictive environment reflects the law’s preference for educating students with disabilities in regular classrooms with appropriate aides and supports, schools routinely flout these recommendations, segregating and warehousing students with cognitive delays.
As the Crane Center for Early Childhood Research and Policy at Ohio State University notes, “for every year of the last 40 years, most children with intellectual disability were educated in classrooms where they spent little-to-no time alongside peers without disabilities. Further, there is evidence that there are factors outside of the severity or nature of a child’s disability that are driving these trends.”
Denise S. Marshall, chief executive officer of the Council of Parent Attorneys and Advocates, Inc., a national organization that works to protect the legal and civil rights of students with disabilities and their families, blames this on ableism. “At the heart of civil rights and equity is the notion that separate does not mean equal,” Marshall told Truthout. “An inclusive school honors diversity within the classroom and tries to build a sense of community so that all students can learn and grow. When a school removes a child from a general education setting and puts them in a more restrictive special education classroom, we’ve seen physical restraint and isolation increase. The kids who are most at risk of physical restraint or seclusion are those with IDD.”
Jordyn Zimmerman, director of professional development at The Nora Project, a group working to help educators develop curricula that meet the diverse needs of all student learners, knows firsthand the trauma this can cause. As a non-speaking person with autism, Zimmerman communicates using an iPad that “speaks” the words she types.
“I’ve used an iPad for nine years,” 27-year-old Zimmerman told Truthout. “Obtaining one took a lot of advocacy by my parents and my own persistence.” Before obtaining this life-changing device, Zimmerman says that she was assumed to have an intellectual disability and was sent to both local public and segregated schools far from her Hudson, Ohio, hometown. While in public school, she was subjected to physical abuse, including being handcuffed by police for acting out.
Being underestimated, she explains, was extremely frustrating. “I was constantly trying to make sense of the world around me,” she explains. “Speech is a motor movement. Language is a cognitive function. They are often conflated to the detriment of non-speaking students.”
Her high school experience, she says, illustrates the consequences of this conflation. She describes being given little beyond busywork, with tasks including putting name cards in alphabetical order, washing windows at a local bus depot and arranging clothes on hangers in a department store. Her teachers, she explains, assumed that she could understand only the most basic commands.
“I was lucky in eventually getting access to technology, but students should not have to rely on luck to be included,” Zimmerman says. “People are denied access to technology every day,” which leaves approximately 5 million non-speaking children and adults without the augmentative and alternative communication equipment they need to fully participate in their schooling, family and community life.
Zimmerman, who has completed a master’s degree in education, now works full-time to promote educational equity.
“Inclusion allows people to meaningfully belong in a space. It’s better for everyone in terms of school outcomes, mental health, and other markers of successful learning,” she says. “As assistive technology expert Erin Sheldon has pointed out, inclusion is also safer. It’s better to be in a classroom with 30 classmates who can see what is happening and speak up if something is wrong, than to be in a room with three classmates who may not be able to communicate.”
Other benefits of inclusion are well documented. Disabled students in inclusive classrooms have higher math and reading scores than those in segregated settings. They also have higher self-esteem, more social interactions and friendships, and better communication and social skills. Kids without disabilities also benefit and become more patient and respectful of human diversity.
Filmmaker Dan Habib, director of the Inclusive Communities Project at the Westchester Institute for Human Development, and his son Samuel, who has cerebral palsy, have been working to promote inclusion for more than 20 years, making films that give people with disabilities a platform to discuss their lives and experiences.
Both Dan and Samuel see inclusion as a matter of will. “It’s about attitudes,” Dan told Truthout. “I’ve seen schools in Mississippi and on Native American reservations, where 100 percent of the students are poor, do inclusion well. It’s about leadership, not money. Unfortunately, there is a lot of inconsistency, and inclusion can vary from city to city, school to school, teacher to teacher.” In addition, he acknowledges that there is still a tremendous amount of prejudice against people with disabilities, something he hopes teacher training programs can help to eliminate. The goal, he says, should be to break down stigma toward people with disabilities and simultaneously underscore the benefits of inclusion for everyone in the community, regardless of their health status.
“Teacher training has improved and some universities and colleges are no longer putting general education and special education in separate silos,” he says. “In these programs, aspiring teachers are learning to teach all children, but this is not yet happening enough. Segregated structures have been in place for 80 or more years, and some people have trouble reinventing systems. Many schools simply take the path of least resistance, which means maintaining segregation and putting kids with challenges together in a room. This denies them a truly representative education in the real world.”
Parents, Dan says, also need to be educated to question what they’re told by evaluators and educational authorities. “Many guardians assume that the school is operating in the child’s best interest. They believe what they’re told, but they shouldn’t.”
What’s more, teachers and school administrators need to include the disabled child or teen in discussions of educational goals and how best to achieve them.
“Aspiring teachers need to learn directly from people with disabilities and not just rely on research studies and textbooks,” Emily Ladau, author of Demystifying Disability: What to Know, What to Say, and How to be an Ally, told Truthout. “They need to hear about lived experiences.”
Lorenzo Van Ness — a disability justice trainer at Sins Invalid, a disability justice performance project that centers disabled artists of color and queer/gender non-conforming people, and a graduate student in special education at New York City’s Hunter College — agrees and argues that much more needs to be done to prepare teachers to understand disability and how stigma against the disabled has been perpetuated.
“The U.S. educational system came out of a desire to assimilate new immigrants and reduce child labor,” Van Ness says. “At the same time, public school was modeled on the idea of industrial standardization and mass production. This led to some people being seen as ‘less valuable’ than others because they were seen only in terms of conventional productivity. Prejudice against them was a direct result of this mindset.”
Changing this, as Habib noted, typically comes down to who is in charge of public education.
“The principal of a school is key in setting the tone,” Carol Quirk, CEO of the Maryland Coalition for Inclusive Education, told Truthout. “The second-most important thing is collaboration. Teachers need time to plan and coordinate work with other instructors.”
And then there are the parents or guardians of disabled children, people whose expertise is typically discounted by teachers and school administrators. “Testing is not the only way to identify basic issues for a particular child,” Olivier Bernier says. “Schools also need to look at how they are set up and see what stigma still exists. This will enable them to address prejudicial beliefs, including the idea that children with intellectual or developmental disabilities can’t learn with other students, that they will slow down class achievement. They also need to own that there is no such thing as an ‘average’ student. Everyone has learning challenges of one kind or another.”
“We all have to buy into inclusive education,” Hilda Bernier adds. “But it just takes one person who believes in the benefits of inclusivity to get it started in a particular school. I am hopeful that things are moving in that direction. When teachers realize that they can teach all kinds of students, all kinds of minds, it opens a window to education that benefits everyone. I look forward to the day when we no longer talk about inclusive education, but just talk about education, knowing that this refers to classrooms where everyone learns together. We can’t be afraid to embrace change.”