Monday, March 03, 2008


My daughter, a young woman who has Down syndrome, is in the chorus of her high school’s production of the musical Crazy for You. How wonderful that she is included!


Here’s what inclusion looked like: Eliza and her friend, another young woman with Down syndrome, dancing and singing in the back row, behind everyone else. Eliza is four feet, eight inches tall. The chorus members stood shoulder-to-shoulder in front of her, wearing heels. They’re of normal height. They faced forward. They did not interact with her. On opening night, from the audience, I caught only split-second glimpses of my daughter, and I had to crane my head this way and that and sit up very tall to do so.

Of course there were lots of parents in the audience looking for their children. A woman behind me said to the person sitting next to her, “Where is she? Where is she?” And then a few moments later, “Oh, look, she’s so beautiful.”

I think my daughter is beautiful, especially when she smiles with joy and delight. Did I ever get to see that look on opening night? No. I was looking through the legs of all the dancers, trying to pick out her shoes—flat Mary Janes rather than the character heels on everyone else—trying to discover where she was. I never saw her face long enough to know if she was enjoying herself.

For the second show, on Sunday afternoon, I had green room duty. During rehearsals there has been a teaching assistant present for the special ed kids. But for some reason, there isn’t one for the three performances after opening night. So I and the mothers of Eliza’s two friends with Down syndrome who are in the show have volunteered to be there to help the girls. It’s hard for them to put on pantyhose by themselves.

Yesterday’s matinee was my day in the green room. The show’s brand of inclusion looked even worse from backstage. After walking the girls upstairs to the stage when it was time for chorus entrances, I waited in the wings during their numbers. I watched them perform—two girls (one was sick) dancing by themselves at the back of the stage, behind a solid line of others. Like ugly ducklings shunted off to a corner of the room so they won’t be seen. It is an image that will stay with me for a long time.

In the dressing room before the show, the cast members—approximately 75 kids—participated in vocal warm-ups. They joined hands in a circle and listened to the director’s praise and instructions. My daughter and her friend sat on the floor outside the circle, looking on—until I made them get up, pushed them toward the other kids, and made the normal teens aware of their presence. As those kids “circled up,” nobody had thought to come over and urge or invite these two “special” girls to be part of the show community. Nobody.

I don’t know how things got to be this way. I don’t attribute it to maliciousness. I know that special needs kids can marginalize themselves and need lots of encouragement in situations that may be overwhelming for them. I know that having a teaching assistant present during rehearsals can mean that the special kids come to depend on the TA instead of becoming independent. The normal self-absorption of teenagers can mean that the regular kids never interact with, much less assist or enjoy the special ed kids. I also know that there’s so much to do in getting a show up and running that some details—like my daughter—inevitably fall by the wayside. I also know that plenty of people would take the attitude that my dismay and anger about the show is my problem, perhaps attributable to an inability to accept my daughter‘s limitations. And that I should just be happy—thrilled even—that my daughter gets to be part of the show.

Only she isn’t really a part of the show. Of course, she doesn’t realize that the audience mostly can’t see her. She wears a costume and make-up. A few kids in the cast greet her. One young man, whom Eliza knows from church, warmed my heart yesterday. When Eliza said to him, “Marek, you’re doing a great job,” he replied, “You’re doing a great job, too, Eliza.” But people in the audience can hardly see her. They don’t even have to know that she’s there.

Eliza’s high school has a Special Olympics basketball team. Every year, the special ed kids play a basketball game during the school day against another high school’s special education students. The regular kids can get out of class to go to the game and cheer, so the bleachers are full. Who would miss an opportunity to skip class? Everyone enjoys it. It’s a big day for the special ed kids, and it’s a day that the high school community points to with pride as evidence of everyone’s support for the disabled community.

It’s easy to support these kids when they are all together on a basketball team—their own community. It’s much harder to figure out how to make them part of a community that includes everyone else.

Copyright Gwen Gotsch 2008. Do not reproduce without permission from the author.

No comments: