Nico and his sister, Ellie, getting ready for school. (David M. Perry)

“Nico will get to participate as an audience member.”

With those words, the teacher explained why my son, a second-grader with Down syndrome, wouldn’t be part of the end of the year performances. These were just little informal plays that emerged from reading groups, groups in which my son was supposed to be included. But the teacher had announced these end-of-the-year events with a flier cheerfully titled, “Come One, Come All.” There were 23 names on the flier, detailing who was in each play on a given day. Nico’s name was conspicuously absent.

The end of the school year should be a happy time filled with celebrations of all the hard work and preparation for a busy summer ahead. For us, though, Nico’s exclusion from these plays was just another reminder how far we have to go.

This year marks the 25th anniversary of the Americans with Disabilities Act (ADA). Later that year, the Education for all Handicapped Children Act (EHA) was reauthorized and re-named the Individuals with Disabilities Education Act (IDEA). While the ADA mandated “reasonable accommodations,” EHA and IDEA ensure “Free and Appropriate Public Education” in the “Least Restrictive Environment” for children with disabilities. In the 1990s and more recently, as the ADA has begun to transform our culture, “least restrictive” increasingly means a  typical classroom with an adapted curriculum.

I’m 42 and graduated from high-school in 1991, the year after IDEA was enacted. Throughout my education, in both public and private schools in the Northeast, Midwest, and South, I can’t remember ever meeting a child with visible disabilities. For me, like most people of my generation and older, the “handicapped” kids were kept in separate classrooms and separate schools, fully segregated from the general population.

But all those seniors who are receiving their high school diplomas this year are part of a growing generation of people, with and without disabilities, who have been learning from each other in inclusive classrooms throughout their lives. They’ve seen both the rewards and the challenges. Ideally, they’ll carry the knowledge that inclusion is possible and desirable into their future, shaping how they interact with others throughout their adult lives. That’s only going to happen if they get the right cues from their teachers and parents.

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Nico’s Individualized Education Plan (IEP) proposes a roughly even split between included and segregated education. We are not hardliners. My mantra is that inclusion is not same-ness, and that the best approach is to carefully consider the needs of the individual. Nico is very social. His time in the full classroom builds on those strengths. For some subjects – math and writing especially – he needs a quiet space and one on one instruction, so he gets pulled out for those subjects.

He’s made great strides this year thanks to such instruction. I cannot overemphasize the joy and gratitude that we feel when Nico sits down with a book, his finger tracing each word, reading aloud, clearly understanding and understandable.  At such moments, his potential feels limitless.

And then something like this flier happens and the doors slam shut. What’s apparent to us is that if Nico’s potential is, in fact, limited, it’s because of a culture that builds barriers towards inclusion, not because of his genetic makeup. In the disability community, we call this the “social model” of disability, in which problems emerge from a society not ready to be inclusive. His teacher is not a bad person, but she is part of a culture for which exclusion seems natural. In her mind, it’s not a big deal to her to send out a flier listing every name but for my son’s, and then, when we asked, to brush us off. No one is fooled by the idea that sitting in the audience equals full participation. Not us. Not Nico. Not his classmates.

What lessons are his peers learning from Nico’s exclusion? He’s had great relationships with them. They whisper to each other that he’s “famous” in the school. When we showed up for a school musical performance in March (another instance in which his teacher had no knowledge of plans for his inclusion), his classmates surrounded him with cheers, hugs, and happiness to see their friend. We regularly get notes sent home, often misspelled in adorable ways, addressed to their “budy Niko,” and painted with pictures of kids having fun.

When a child with disabilities is kept out of an activity, not only will it hurt them (and their families), but the typical children internalize this segregation as necessary. They will carry that lesson forward. Right now, one of the biggest challenges facing the disability community is how to build more inclusive workspace and living spaces, so that people with disabilities don’t have to be housed in isolated institutions and work in sheltered workshops (often for sub-minimum wage). The ADA and IDEA generation is primed to shake up society, but they are going to need positive models.

It doesn’t have to be this way. Last weekend, Nico got invited to a birthday party. The instant we walked into a party room, four or five kids leapt to their feet to come over and say hello. Overwhelmed, Nico had to lay down on the floor for a few minutes, and the kids just understood that including Nico didn’t mean same-ness. They patted him on the back, returned to their seats, and waited for him to be ready. Within a few minutes, he was up, playing video games and otherwise hanging out with his friends. They found ways to include him, and he found ways to include them.

But for how long? How many times does an authority figure have to signal that Nico is just audience, not participant, before the kids stop seeing him as a peer? How many times do parents have to decide to exclude Nico from social functions? He has been invited to exactly zero play dates by other parents this year. He has been invited to only two birthday parties. By the time he’s in high school, will he no longer be welcome in the loving community of peers that I witnessed last weekend?

Nico is going to be fine. We will meet with the principal of the school, articulate a more robust philosophy of inclusion in his upcoming IEP, and make sure to build better pathways of communication next year. Hopefully, the next time this teacher wants to do readers’ theater, she’ll collaborate with the special ed teacher, rather than just inviting those students to watch. All it takes is a consistent expectation of inclusion, something that may not come naturally to those of us raised in schools that segregated the children with disabilities, but we can all learn.

To celebrate the 25th anniversary of IDEA, I am asking all educators and parents to go out of their way to be more inclusive. The law mandates certain kinds of formal structures, but that’s not enough.  Kids are smart. They know that “participating” as an “audience member” is that special kind of nonsense with which adults patronize children. Participation is participation, and “come one, come all” must really mean everybody, for everyone’s sake.

David Perry is a freelance writer who focuses on disability issues. He can be found at How Did We Get Into This Mess and on Twitter @lollardfish.

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