Unless you’re a hermit on a mountain somewhere, cut off from all news, you might be getting the impression that the world could soon end, or will for certain end (possibly Tuesday), or maybe even has already ended. I don’t need to give you the reasons for this impression. Any newspaper does. The stories daily paint a picture of a world in which nothing works as it should and few people are any good.
I’m here to say that there’s a very small corner of this world where things are working precisely as they should. This is a story no reporter is going to tell you, especially not this weekend. But my five-year-old daughter, who has multiple disabilities, is fully included and thriving in a typical kindergarten classroom. And it’s beautiful. And it is working just as it should.
Half the size of her peers, wearing a micro-backpack that can’t fit a folder but covers her entire back, Fiona walks into the kindergarten classroom and, with help, hangs her coat on her hook. She sits with her classmates in a circle on the carpet. She orders her lunch as they do, indicating via iPad or her limited speech that she (usually) wants a ham sandwich.
She is, in many ways, very unlike the rest of her classmates, because she can’t form most consonants and she uses an iPad to communicate and she usually “speaks” in single (often unintelligible) words and she doesn’t yet write letters and she takes longer to process questions and she needs support walking down the steps and she hasn’t yet learned to run, and on and on and on. Yet there she is, learning alongside her peers.
The first day Fiona walked into her kindergarten classroom, I wanted to cry. And not just for the same reasons any mother of a new kindergartener wants to cry, which is usually because Oh my God, she’s getting so big, and Now I am entrusting my precious child with others so please Lord, let them be good and trustworthy folks. Yes, I felt those things. But I also felt the weight of America’s history.
According to the U.S. Department of Education, in 1970, only one in five children with disabilities was enrolled in public schools. Pennsylvania, the state in which I was born and raised, once declared that it did not have to educate certain children. Certain kids were seen not to “profit” from public school. Certain kids were called “ineligible.” Among these “ineligibles” was any kid who didn’t reach a “mental age” of five by first grade.
Put another way, in the not-too-distant past, people like Fiona were legally denied an education.
But the Pennsylvania Association for Retarded Citizens (PARC) sued the state, citing the 14th Amendment of the Constitution. And this is where I kind-of want to weep, maybe because it’s election week and maybe because our country has been through hell, but also because at the heart of our nation are some gorgeous, gorgeous promises. Like this clause from the 14th Amendment:
No state shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any state deprive any person of life, liberty, or property….
PARC argued that the Pennsylvania state law robbed the so-called “ineligible” children of their rights. PARC won, and Congress passed national legislation with similar guarantees. My daughter’s (and any citizen’s) right to a public education was officially granted in 1975, with the Education for All Handicapped Children Act. This was the first major legislation passed to ensure that kids with any disabilities—physical, intellectual, or otherwise—could go to school, that they had a right to a free, appropriate, public education. (Today, that right is protected under the Individuals with Disabilities Education Act, or IDEA, which was passed in 1997 and amended in 2004.)
So imagine my tender, hopeful heart as I watched my girl, just thirty-four inches tall, just twenty-one pounds big, first strutting through the door of her kindergarten classroom. Her body is not the norm, and once upon a time, she would have been barred from entering. My husband and I would have had to pony up our own funds to educate our kid. Instead, at the door of our small public school in Vermont, Fiona heard the words, “Good morning,” and “Hello.” Greetings poured from the principal and the kindergarten teacher and the speech therapist. The speech therapist knelt down to Fiona’s level, held an iPad on her knee, and hit a button on it. “Hello,” the iPad said, just like my daughter’s.
I was beyond moved. This was not just an open door. This was a bona fide welcome committee, determined to make “mainstream” kindergarten work for my girl.
Then the principal looked at me with a kind and concerned smile. “How is Mom doing?” she asked.
“Don’t ask me that,” I said gently as pools of water blurred half my line of vision. I wiped my eyes. I was sending my kid simultaneously into great promise, and great risk.
Although the major legal barriers to education have been removed for kids with disabilities, there are still plenty of cultural, logistical, attitudinal, and financial barriers. Recent reports from Texas confirm that kids with disabilities are regularly denied entitled services.
And personal stories abound. Take Amy Silverman, author of My Heart Can’t Even Believe It. She describes her rocky experiences transitioning her daughter, who has Down syndrome, into a public kindergarten. Silverman felt the most appropriate placement for her daughter was full inclusion at her local school, like any other kid in the neighborhood.
“Fine,” the principal said in reply. “But if Sophie wants to go to a typical school, she’ll have to act like a typical kid.”
This sentence was illegal, of course, then (in the late 2000’s) and now. But this sentence is the modern-day version of Pennsylvania’s nasty, exclusionist law. Rather than creating structures that are accessible for diverse bodies, our institutions have historically demanded that those bodies comply or get out. Our laws change; our culture changes more slowly. The ancestral shadow of a legally barred school building is still with us. We see it when a blind boy has his cane confiscated by school officials. We see it when a teacher’s aide gets caught on video shoving an autistic boy with such force that he falls over. The message is: If you do not fit into the norms, you should not walk inside these walls.
There’s no possible way my daughter, Fiona, can “act like a typical kid,” as Silverman’s horrible principal demanded. One of the great liberations of mothering Fiona is that she’s so far outside the so-called “norm” that there’s no point in pretending. I love that about her. But that also means that my girl must rely on people doing their jobs. On special education working as the law intended. She must rely on earnest, hardworking educators and therapists who have high expectations and provide accommodations so that the classroom in which they teach is a place where she can thrive. It’s a tall order. It shouldn’t be, but it is.
And by God, my girl has been given all of this. On day one, Fiona’s elementary school had an assembly. Parents were invited. I sat in the back of a gymnasium and listened to every school professional introduce themselves. When it was Fiona’s speech therapist’s turn, she said hello three ways: first with her mouth, second with American Sign Language, and third, with the same app Fiona uses on her talker. Then she said she’d soon visit every classroom to explain these different modes of communication. In other words, on day one, Fiona’s school began teaching every kid in the building Fiona’s language. This, this is a true welcome. This is a model of “inclusion.” This is a gesture that says, “Not only do I allow you your differences—your cane, your talker, your ASL—but among the entire community, I foster understanding of and facility with them.”
But the good news doesn’t stop there. Not only does Fiona’s speech therapist have a talker (loaded with Fiona’s identical vocabulary), and not only does Fiona’s aide have the same, but so does the class.
Her small classroom of kindergarteners have one extra talker among them so that the kids can use it to communicate—with Fiona and with each other. And this isn’t just a kind gesture in inclusion. It has become a useful literacy tool. In collaboration with the speech therapist, the kindergarten teacher decided to use some of the “core vocabulary” on Fiona’s talker—those 119 frequently used and powerful words—as the targeted “sight words” for her class. Words like “Like” and “Can.” (FYI: Fiona uses an app called Speak For Yourself.) Since the talker not only says those words when a kid touches them, but also features the word’s spelling, the talker can support each child in their literacy.
I could go on, citing all the awesome ways that Fiona’s small public school has helped her thrive, but I’ll leave the above as representative examples. Had Fiona encountered a principal like Amy Silverman’s, a person who insisted a child with a chromosomal syndrome “act like a typical kid” if she wants to “go to a typical school,” then Fiona would have been put in some self-contained classroom somewhere. The expectations for that classroom would have been different, probably far lower, than in Fiona’s typical kindergarten class. The students would probably not be working on sight-reading at age 5. But instead, my girl is expected to learn to sight read. And consequently just today, Fiona got three out of three sight words correct.
Today, just a few days away from America’s election day, there’s a pervasive, despairing sentiment that nothing works. That we live in a broken country. That the government does not serve its citizens, that it’s just a multi-headed beast fuming toxic snot-water in people’s ways.
But I want to say this: in one small pocket of one cold section of this one big country, something is working. A handful of teachers are doing a fantastic job. A kid who would have once been deemed “ineligible” for school, she is learning to read. I raise a glass to that. I even hum the National Anthem to that.