Jay Spencer, a physically disabled sixth grader at Hayfield Elementary School in Alexandria, Virginia, says he wishes his mainstream teachers knew what it felt like to see how he sees.
“It’s like if you put your finger in between your eyes and then it disappears,” he says.
Jay, 12, has Leber congenital amaurosis (LCA), an inherited retinal degenerative disease. People with this disorder typically have severe visual impairment beginning in infancy, or in Jay’s case, when he was two years old. His fine vision is lost, and he can’t detect light and color, but he can see shadows of figures.
Jay is one of 2.8 million school-aged children with a disability, according to the 2010 U.S. Census. Of those children, many of them are included in general education classes in our public schools and the numbers continue to grow, especially among children with cognitive disabilities such as autism. The population of students with physical impairments may be smaller, but more and more educators have these students in their classrooms. Educators widely agree that all students can participate in the general education curriculum when provided with appropriate supports and services, but few of us really know what a school day is like for physically disabled students and how they think can we better accommodate their needs in our classrooms.
Much of it depends on their Individualized Education Plans (IEPs), but sometimes the best ideas come from the students themselves.
“A lot of teachers act like I’m totally blind, but I can see some things when I look out of the side of my eyes,” he says, tilting his head to the right and looking out of the corner of his left eye. “Sometimes people think it’s rude, like I’m not looking at them when they’re talking to me, but it’s the only way I can see.”
Jay, who is on the cusp of middle school, shares his experience as a visually impaired student, and Curtis Whitley, who finished high school and is now an NEA Student Member at Cal State San Marcos in San Marcos, California, explains what it was like to go through school with cerebral palsy.
Though every student is unique and Jay and Curtis have very different disabilities, their stories reveal common themes. The one that emerges most often is that physically challenged students are, for the most part, just like any other student, and they don’t want to be treated any differently because of their disability.
‘You Just Gotta Try’
Curtis recalls an elementary school Field Day. Realizing that he couldn’t participate in all of the games, he joined in when there were races around the track.
“I had a wheelchair then and I was burning rubber around the track,” he says. “Everyone was cheering. Inclusion can happen every day, if we’re being as inclusive as possible. You just have to let kids find a way to participate.”
Jay is a competitive swimmer and wrestler, and even played T-ball when he was younger.
“A lot of people might say a blind kid can’t hit a baseball,” says Gina Spencer, Jay’s mother. “But when all the other kids were signing up, Jay asked when he was going to sign up, too. If he couldn’t think of a reason why he shouldn’t play, why would anyone else?
Jay is a natural athlete who has been swimming since he was a toddler. He began wrestling a few years ago and is one of the best in the league, with gold, silver, and bronze medals to prove it.
“In wrestling, I’m always touching the figure in front of me, so I don’t really need to see,” explains Jay, adding that one of his best friends, a fellow wrester and sixth-grade classmate, helps him learn the moves.
When it comes to sports, Jay says, “You just gotta try. Find one thing you’re good at, and then stick with it.”
Unfortunately, finding a sport isn’t as easy for everyone, and is an ongoing struggle for Curtis.
“I have cerebral palsy in all parts of my body and it affects everything, but it manifests in my lower body more,” he says. “I have spastic dysplasia—that’s when your muscles tighten up, and a lot of stuff is very tight. But my arms pick up the slack from my legs.”
With more command over his arms, Curtis was able to play goalie on a grade-school soccer team, and when a kickball game would break out on the playground, he’d hit the ball with his crutch and another student would run the bases for him.
“My runner would jam! Lots of kids wanted to buddy up with me to be my runner,” he says. “Sometimes I’d run the bases myself, and when I got tagged out, it would sting. But it stings for anybody who gets tagged out, doesn’t it?”
Teacher Motivation is Key
In high school, Curtis realized his sports options were limited, and he felt left out of the athletic “jock” culture American high schools celebrate. Fortunately, his P.E. teacher in high school was especially inclusive. He’d find activities for him in the weight room, and when the high school held a jog-a-thon fundraiser, he set up cones for Curtis on the asphalt so he could complete the same distance the other students were running by doing laps around the cones in his wheel chair.
“He said, ‘We’ve got money to raise, now get to it!’” Curtis remembers.
Both Jay and Curtis say that children with disabilities need to be pushed and motivated just as much as any other student.
Curtis says he was grateful for teachers like his sophomore year math teacher.
“He said, ‘Hey Curtis, I hear you say you want to go to college. Then you need to get the heck out of special education classes, Dude! You need to figure out some way to get into mainstream.’”
So Curtis tried harder, and he got into more mainstream classes, and it paid off. He attributes it not only to teachers who pushed him, but his own determination that is born of having to overcome so many physical challenges and other people’s preconceived notions about what those challenges mean.
“I would argue that in some ways, you have to be even more confident than physically-abled students,” he says. “You constantly have to prove yourself—you have to prove that you belong in that room with everyone else and that you’re just as capable as everyone else.”
Parental Involvement Makes a Difference
When a student is Jay’s age, it takes a little help from motivated parents, like his mom Gina, who is constantly advocating for him and seeking out the right teachers and administrators. He’s had supportive and inclusive teachers at Hayfield Elementary, but his parents are a little worried about middle school next year.
When Gina toured the middle school, she wanted to visit the honors and AP classrooms. Instead, she got a tour of the special education resource rooms.
“He’s an A student, but there are people at the middle school who assume his visual disability means he has a learning disability, too,” she says.
“You expect that kind of assumption from the general public, but the schools are supposed to know their students better.”
Gina says her son is a straight-A student not only because he’s very intelligent, but also because he’s a perfectionist. His dogged perfectionism helps him in some ways—visually impaired people need to be highly organized, with a place for everything and everything in its place. But perfectionists also put an enormous amount of pressure on themselves to never make mistakes.
His third-grade teacher was the first to tell him it was OK to make mistakes. “Everyone makes mis- takes,” she told him. “And you are just like everyone else.”
That went a long way toward building his self-esteem and confidence, Gina says. “He is like everyone else, and he needs to be reminded of that.”
Inclusion is Invaluable
Spencer was also an elementary school teacher for 13 years, and she says Jay’s third-grade teacher had that indescribable “it” factor that all good educators have. Jay can’t see what his teachers write on the smart board or the chalkboard, and he needs them to explain what they’re writing or what they’re pointing at.
“My third-grade teacher always did that,” Jay says.
Jay has no visual cues, so if a teacher assigns an essay and then points to a poster listing the five steps on how to check writing, he has no idea what his teacher is pointing at, and wouldn’t be able to read the steps if he did. When there’s a visually impaired student in the room, or a student with difficulties processing information, educators need to remember to not only point at the poster, but also to read it aloud so that all students in the class have a chance for it to sink in. Here’s what you should do, according to Jay: “Talk—a lot.”
Jay’s third-grade teacher was a talker. “A really loud New Yorker,” laughs Jay’s mom. She also had a gift for motivating all of her students, and challenged everyone in the class to strive for more.
Here’s what you shouldn’t do: Leave disabled students alone. This is obvious for any decent educator, but Jay’s second-grade teacher (who left the profession to start a family) had no experience with inclusion or mainstreaming and thought Jay would simply work independently from the rest of the class.
He spent a lot of time listening to books on tape and would sometimes become so engrossed he would lose track of time. One day he realized he’d lost track of so much time that he found himself sitting all alone in the classroom. His second-grade teacher had forgot- ten about him, ushered the other children into the room next door for read- ing, and turned off the lights. With the earphones on, he couldn’t hear the class leaving. And with his visual disability, he could- n’t see that the lights had gone off.
“I can’t believe she just left me,” Jay says.
That kind of negligence is the rare exception, and many educators actually go in the opposite direction.
“Sometimes teachers can be over-helpful,” Jay says.
He wants to assure them that he’s quite capable of keeping up with lessons—he has all the work-sheets and textbooks in Braille, and there’s a lot of assistive technology online for the visually disabled that he takes advantage of. He also finds his way around the school quite well, and has a bunch of friends who help him navigate through the day.
It’s in a caring teacher’s DNA to want to be helpful, but both Jay and Curtis recommend that you let disabled students do as much on their own as they can, even if it’s picking themselves up after a fall.
He realizes that teachers just want to help, but asks that they remain calm and realize that the “kid probably falls all the time. He’s probably a pro at falling.”
Rather than trying to help him up right away, he says they should take a breath and remain calm, because the other students take their cues from what their teachers are doing. Ask the student if he needs help, and offer an arm before grabbing him, Curtis suggests. If the student says he can do it on his own, let him—trust that he’s done it before and is the best judge of whether he can do it again.
“I know it’s a gray area, especially when it’s a younger kid, so you have to make that adult decision, but err on the side of the student being capable,” he says. “Then try to get the class back on track as soon as possible, because the last thing the student wants is to prolong the situation.”
Addressing Classmates’ Concerns
No student wants to be embarrassed in front of classmates—everyone wants to fit in, and belonging becomes especially crucial during early adolescence. Jay, who is on the threshold of adolescence, is anxious about entering his new school next year.
He doesn’t like to walk with his cane, and though he will likely need it in the much bigger and more labyrinth middle school, he’s not ready to admit it.
Unlike learning disabilities, physical challenges are immediately recognizable, as Curtis remembers all too well. It was especially tough when it came to interacting with girls, he says, because “Prince Charming doesn’t walk with crutches.”
What scalded him the most, however, was being asked, “What’s wrong with you?” He knew most children were just curious, but the phrasing implied that he was somehow not right, but wrong. After the initial hurt wore off, he’d explain that he was born prematurely, stopped breathing, and that his brain was deprived of oxygen.
“I’m very open to talking about cerebral palsy and raising awareness about disabilities, but kids can be so direct, and then boom, they’re asking what’s wrong with you.”
Children are naturally curious, but to make it less uncomfortable for disabled students, it helps a lot if educators address questions at the beginning of the school year. At Hayfield Elementary, Jay’s vision teacher conducts a presentation to let the other students know what to expect.
She shows them Jay’s “Brailler,” which is like a typewriter with a key corresponding to each of the six dots of the Braille code. She demonstrates how it works and then lets the students try it. At the end of the presentation, each student has a sheet of paper with his or her name in Braille.
“This just squashes any problems from the get-go,” says Jay’s mom. “Kids go home and tell their parents, ‘Guess what? There’s a kid in my class who can read with his fingers! It’s so cool.’”
Curtis, who is studying to become a history teacher, is already educating children about students with disabilities like his. On Disability Awareness Day, he visits an elementary school on Camp Pendleton in California. He brings a poster he made when he was in fourth grade with pic- tures of him playing soccer, of his father in his mil- itary uniform, and of camping trips he went on with the Boy Scouts.
“Who likes to play soccer?” he asks. “Who likes to go camping? Who has a parent in the military?”
Every hand goes up.
“Wow, looks like we have a lot in common,” he says. “Maybe we could have done this stuff togeth- er. I bet there are physically challenged kids here who also have all these things in common with you. Who knows, you could be BFFs!”
At the end of the day all of the students write about what they’ve learned, and Curtis gets copies. He says they always include that even though another student has physical differences, they could be “BFFs.”
“My goal is to be a mainstream high school social studies teacher educating a rainbow of ability levels, including physically challenged kids,” Curtis says. “Just being in front of them communicates the level of achievement they can reach.”
As Curtis has learned—and Jay is learning— despite the constraints put upon them by society, the most powerful are the ones they put on themselves.
“Hearing a disabled kid say ‘I can’t’ is like nails on a chalk board to me,” Curtis says. “What I want to do is show them that they can. There’s no giving up, and no excuses. Let’s rock and roll! Now, that’s for every kid.”