When I was growing up in Chicago, most of the kids in my neighborhood either walked a few blocks to the local public school, John H. Kinzie Elementary, or to one of the nearby Catholic schools. But a big yellow school bus would arrive to take my sister and me to Walter S. Christopher Elementary, a Chicago public school for kids with disabilities. It was a round trip of about twelve miles.
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That was because my sister and I were in wheelchairs. It was the 1960s, and public and parochial schools were allowed to turn us away simply for that reason. There were no laws to stop them. Kinzie wasn’t wheelchair accessible anyway. There were stairs on the entrances and I sincerely doubt it had wheelchair-accessible bathroom stalls or anything like that. Such schools were not meant for kids like us.
No, Christopher was the school for disabled kids. Many of our classmates were bussed in from neighborhoods much more far-flung than ours. And these weren’t just kids in wheelchairs. There was a Black girl who walked and talked just fine, but she had no nose. It looked as though she had a homemade prosthetic that was vaguely shaped like a nose and maybe was made of clay. It was several shades darker than her skin tone and literally glued onto her face. It would sometimes fall off when she did something physically active, like jump rope. She’d pick up her nose and run off to the office of the school nurse to get it glued back on.
There was another Black boy whose face was scarred and distorted by a fire. Another kid had rotten teeth. He just had a few grayish-brown spikes in his mouth that looked like tiny stalagmites and stalactites. But it sure didn’t seem like there was anything else disabled about him.
All of these kids could easily get into and around a neighborhood school like Kinzie, but still they were turned away.
The Americans with Disabilities Act defines a disability as a physical or mental impairment that substantially limits one or more major life activity. It seems that in my grade school days, the unwritten definition of disability being applied by school districts was a physical or mental imperfection that makes others feel uncomfortable.
We were segregated away because we were freaks.
During my school days, the only public high school for disabled kids was Jesse Spalding. Most kids who graduated from Christopher or one of the few other public schools for disabled kids would be bussed there. My local high school, John F. Kennedy, was as inaccessible as Kinzie.
The generation of disabled kids before us were even more isolated and shunned by the public school system. Judy Heumann, an internationally renowned disability activist, grew up in Brooklyn and became disabled as an infant during the polio epidemic of 1949. In her memoir, Being Heumann, released last year, she recounts the day in September 1953 when her mother got her all dressed for school and lugged Judy in her wheelchair up the stairs of the neighborhood school on the first day of kindergarten. The principal turned Judy away, saying that because she was in a wheelchair, she was a fire hazard.
So, instead, Judy was tutored at home for two-and-a-half hours a week. In her memoir, she writes, “The idea that I could learn anything meaningful in two and a half hours of instruction a week was, of course, ludicrous.” She described the homework as “meager.”
Thanks to her mother’s persistent advocacy, when Judy was nine years old and halfway through fourth grade, she was finally admitted into a public school program for disabled kids called Health Conservation 21. It was housed in the basement of a public school. The students in Health Conservation 21 ranged in age from nine to twenty-one.
Nondisabled kids went to school throughout the rest of the building. She writes, “They were taught a regulated curriculum that required them to be in school from eight-thirty in the morning until three in the afternoon—about six hours of instruction. The quantity and quality of their instruction was designed to ensure that they would progress in school, from elementary school to middle school, and then to high school and, ideally, college.
“Nobody, not the teachers, not the principal, not the New York City Board of Education, expected the special-ed kids to learn. Many didn’t expect us to progress from elementary school, to middle school, high school, university. We were expected to stay in Health Conservation 21 until we were twenty-one years old, at which point we were supposed to enter a sheltered workshop.”
But in 1975, the U.S. Congress passed the landmark law that is known today as the Individuals with Disabilities Education Act (IDEA). It states that disabled kids have the right to a “free and appropriate public education.”
That was intended to ensure that school districts would no longer ignore or segregate kids with disabilities, as they did with Judy and me. IDEA has produced several generations of students that we older folks often call “mainstream crips” because they went to school with their nondisabled peers.
But even forty-five years after Congress made equal access the law of the land, many school facilities, and the people who run them, are not very welcoming to students with disabilities.
At the request of Congress, the Government Accountability Office conducted a physical access survey of K-12 public schools. The GAO’s subsequent report, which came out in June 2020, drew many sad conclusions.
It found “barriers that may limit access for people with disabilities” in all fifty-five schools visited by GAO officials in sixteen school districts nationwide. The report estimated that, as a result, 17 percent of school districts—enrolling more than sixteen million students—have one or more schools that “are not typically attended by students with physical disabilities due to the number of barriers.”
Schools with accessibility problems shut out disabled people who are not students, too. The GAO report said, “People with disabilities have too often been excluded from participating in basic civic activities that can take place in school facilities—such as voting, seeking refuge at an emergency shelter, or simply attending a high school sporting event or parent-teacher conference—due to physical barriers that limit access.”
Anja Herrman’s education experience gives credence to the GAO’s findings. She’s fifteen years old and has used a wheelchair since she was in third grade. In the fall, she will be a sophomore at her local high school in the Chicago suburbs.
Anja wrote a first-person essay that was recently published online in Input magazine. In it, she lamented the prospect of being required by state law to return to school in-person, in the fall, now that the pandemic has subsided somewhat, after completing her freshman year entirely online.
In the essay, Anja recounts how, in grade school, in order to cover the great distance between classes, she left one class five minutes early and arrived at the next class five minutes late. Thus, she calculates, she missed eighty minutes a day and twenty-four hours a month of classroom instruction time.
“What did I miss?” she asks in the essay. “I don’t know, maybe how to solve for X? Or how to conjugate a French verb? Perhaps how to dismantle a bomb? This is valuable learning time I will never get back.”
Anja says she “struggled with all manner of access issues” as she tried to get an education. “There were the times that the elevator was broken, keeping me from reaching my classes upstairs. None of the classroom doors had been outfitted with access buttons, so I had to beg my teachers to please leave the door ajar.”
When Anja toured her present high school for the first time early in 2019, she encountered barriers “ranging from steep ramps to heavy metal doors that I wouldn’t be able to push open” that made her feel unwelcome.
But, ironically, because the pandemic forced all classes online, Anja didn’t have to deal with the physical access struggles at her new high school. This she found to be quite liberating.
“Once the physical barriers were removed, I could actually participate academically to the fullest extent possible—the same way my peers did,” she writes. “I’m feeling like a bigger part of my broader school community, and I’m overall a much happier person. My grades have gone up significantly.”
That’s why Anja now dreads navigating around access barriers that will slow her down, wear her out, and cause her to be left behind, again.
“When we go back to the tired, inaccessible way of doing schooling, I am anticipating a terrible sophomore slump, and I will mourn my freshman year, when I was finally able to soar,” she writes.
In some ways, the school days of the mainstream crips are very different from mine. But in other ways, they are not.