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The dance was in the largest party room at the bowling alley. When lanes freed up, people left to have a turn at bowling. No one was dancing. The music was the same as what was playing in the whole bowling alley, so aside from streamers and a disco ball hanging from the ceiling, it didn’t look much like a dance.
Donald had been part of a club for people from the Life Skills classes since he entered high school, and this was their regular meeting place once a month. The dance was designed to raise money for the club so that they could go on a camping trip to Catalina Island. Some of the members in this group had much severer disabilities than Donald. I saw a couple of wheelchairs and one girl using a walker. I don’t know what all else was required for these kids to be safe and healthy, but I assumed that a trip as big as traveling on a boat to an island and then camping overnight would need quite a few adult volunteers and probably a number of paid staff as well. Based on the small attendance, I had a feeling this dance was not going to raise enough money for all that. Hopefully they had some other ideas in mind.
After meeting all the teachers and assistants who helped Donald and his friends with their work at school, I thought I might like to go on that trip, too, to help out in some way. My mom had been right. I was having a pretty good time, mostly because in this setting Donald was one of the highest functioning people there. It wasn’t possible for me to be embarrassed by him.
Due to the fact that everyone in the group was so different from each other, I was desperate to know which disabilities Donald’s friends had. My mom told me I wasn’t allowed to ask that. She said it was rude. “Just talk to everyone like they’re no different from you or me.”
“But Mom, I just want to know the condition—”
“I’ll make you sit outside on a bench all evening if I hear you asking anyone,” she said. Dad backed her up with some extra warnings of his own.
I thought they were being pretty ridiculous, and the questions burned on my tongue all evening with each person I met. Donald’s best friend (whom I didn’t know existed) was a guy named Peter. Even though he had the ability to recite the first five pages of The Hobbit by heart, I had to walk this hulking, six-foot-three boy to the bathroom because he couldn’t understand the directions. I also had to keep him from biting his left hand, which was permanently scarred from his front teeth. What kind of disability was that? Was it like Donald’s but way more intense?
Then there was this other boy named Kincaid. He was on the small side, almost as short as me, so I took him to be a freshman. This boy twitched, barked, and swore alternately, particularly when he got nervous. What caused a person to do that? I met a few kids who looked like some characters I’d seen on TV. Their faces were round and their eyes small. One of them, a girl named Kathryn, was very cheerful and was excited about the e-reader she recently got for her birthday. In a thick voice that was sometimes hard to understand, she told me several times that she could enjoy all the popular books now because she could make the font big enough to read.
When I knew my mom wasn’t in earshot, I asked her, “Do you have trouble reading because of your. . .?” I let it dangle on purpose, hoping she’d finish my sentence for me.
“Oh, yes,” she said, nodding enthusiastically. “My Down Syndrome makes my eyes have trouble.” She pointed at another girl who was walking by. “Claire has a hard time reading, too, but that’s because she’s mentally retarded.”
“Wait. You actually called her ‘retarded’?” I whispered the last word, afraid to say it all the way out loud. It didn’t matter, though. Claire heard us anyway.
Claire stopped in her tracks and began to shout at Kathryn and me. “I’m not retarded! I’m not! Shut up, Kathryn! I don’t like that!”
Ms. Anderson, my brother’s Life Skills teacher, rushed over to us, put her hands on Claire’s shoulders, and led her out of the party room. Kathryn and I followed her out to the main lobby where we found Ms. Anderson saying some quiet, soothing words near Claire’s ear. It took a minute to calm her down because Claire kept shouting things like, “She’s not supposed to say that! You said she couldn’t say that!”
Their teacher said some more things that I couldn’t hear over the music playing, but after a moment Claire quit raging and lifted her tear-streaked face to Kathryn. “Say you’re sorry.”
“I’m sorry,” Kathryn said easily enough. “Want to go bowl?”
Then they took hands and strolled away together like nothing happened.
I imagined going up to Cathy and ordering her to say she was sorry for blabbing about my brother to Jackie and the others and ruining my life. How awesome would it be if she just did it and then we wandered off from the other girls at recess to play handball and laugh with each other like old times?
Ms. Anderson was about to walk away, and that snapped me out of my ridiculous daydream. I skipped up beside her and touched her shoulder to get her attention. “Why did Kathryn call that girl retarded? Isn’t that a bad word?”
Ms. Anderson smiled gently at me. The lines around her eyes deepened in a way that let me know she smiled more than she frowned. I would think her life would be very hard working with these special needs teenagers all the time, but her bright eyes and laugh lines suggested otherwise. “We’re all pretty sensitive about that word being used incorrectly. There is, in fact, a condition that goes by that name, but we prefer to say ‘developmentally disabled’ or ‘developmental delayed’. A little more eloquent, don’t you think?”
I liked the way she spoke to me in a light voice that made her words very clear but didn’t make me feel like she was treating me like I was a baby. How long did it take her to perfect that style of speaking? I wondered whether that was how she talked to my brother and his friends. It would be hard to talk to them like normal teenagers, wouldn’t it? So many of them sounded like little kids.
I agreed. “My mom said I couldn’t ask about what’s wrong with everyone here.”
She winced. “We’re also pretty sensitive about saying something’s ‘wrong’ with our friends here.”
“Oh. Sorry.”
“Look, I see that you’re interested in learning something, but I can’t go into specifics about everyone’s different diagnosis. There are confidentiality laws . . .”
“I understand,” I told her.
Right then I heard a cheer from one of the bowling lanes. I followed the sound to find Donald, Peter, and two other boys cheering about someone’s score with their arms raised over their heads. Donald and Peter did an awkward high five. I wondered what the score could be.
“Great job, Donald!” Ms. Anderson shouted.
“Donald?”
I guess the shock in my voice came out a little more than I expected because Ms. Anderson patted me on the shoulder and said, “Your brother is a pretty good bowler. The best in the group by far.”
“Really?” I could hardly believe it. My awkward brother? “I can barely pick up a bowling ball, let alone score well.”
“Donald just might surprise you sometimes, I think.”
“Ms. Anderson?” I bit my lip and then blurted it out. “I know you can’t talk about the other kids in your program, but can you tell me about Donald? He’s my brother and all, and I would love to know more about why he’s, you know, the way he is.”
Ms. Anderson sat down with me by the concession stand and took the time to explain to me how Donald had a combination of disabilities. She said he was on the higher end of the Autism Spectrum. Along with that he had poor eyesight and Attention Deficit Hyperactivity Disorder. That made him, in simple terms, slow to understand things and mature.
“Do my parents know all this about him?”
“Yes. We have meetings a couple times a year to discuss how he’s doing and make goals for him.”
I focused on the group around my brother’s bowling match. My mom and dad sat at a table behind them, cheering for him like he was a five-year-old in a T-ball game. “Why have my parents never told me about his condition?”
Ms. Anderson gave a tiny shrug and offered, “I couldn’t say. Perhaps they didn’t think you were ready to hear it?”
All those times I got in trouble for yelling or making fun of Donald, doing mean things like locking him out of the house or just being impatient with him—I hadn’t exactly been proving myself to be very mature. No wonder my parents thought I wasn’t old enough to handle this kind of information. I was grateful that Ms. Anderson was giving me this chance to understand.
“Will he always be like this?”
That was the big question.
“Yes, he will,” Ms. Anderson said, raising her eyes to watch Donald and his friends. “We’ll help him get a job before he graduates from high school, and maybe someday he’ll be able to live on his own. But he’ll always be Autistic and will always need someone to watch over him and help him out with things.”
“As long as he lives? His whole life?”
Ms. Anderson nodded and patted me on the knee. “You’re a good sister, Heidi. Donald is very lucky,” she said. Then she walked away from me to go check on how everyone was doing. I sat there a few minutes longer, thinking over everything the teacher had told me. I didn’t feel like I was a good sister. I felt mean and hateful. Mostly, I felt really trapped.