Jean Wilson, sporting a foam shark hat whose toothy mouth flapped as she moved, strutted toward the Magic Hat Stage of the North Coast Music Festival. "No walkie-talkies on during the show," she shouted at a security guard. "I'm singing loud!"
It was Labor Day weekend in Union Park. A guy with her started chanting, "Shark a-ttack, shark a-ttack." He turned to me and said, "Have you heard 'Shark Attack'?" He laughed. "I had it in my head for three weeks once."
Wilson's hat was a kind of mascot for the Jaws-meets-B-52s tune, whose lyrics begin, "He's got big sharp teeth / And a nose to smell blood." Wilson wrote the song with other members of the Arts of Life Band, who have played at venues such as the Empty Bottle, the Old Town School of Folk Music, and the Cork Lounge in North Center, where I first caught the band three years ago. I remember being hesitant before that show, almost scared for the performers for some reason—how often do you see someone with Down syndrome hanging at the bar and then rocking out onstage?—and then totally embarrassed when they performed with a nonchalant confidence.
Arts of Life Inc. is a nonprofit that encourages adults with developmental disabilities to explore visual and performance art—and to show it off in mainstream public venues. "It's really about integration," says Arts of Life art director Ryan Shuquem, who heads up the band, plays keyboard, and contributes to the vocals. "This is the meeting of two different worlds that have definitely been separated over many years."
After the North Coast performance, Wilson came out into the audience clacking her drumsticks and getting down to Orville Kline (a DJ from the weekly Porn and Chicken dance party), her shark head still bouncing along.
"We want people to realize, 'Hey, this person is in the same world I'm in; they enjoy the same things I do—that we all have some form of disability, and that we should focus on the similarities and not so much the differences," Shuquem says. "But just like any other rock band, we're here to wow the audience and make them dance their asses off."
Jean Wilson is 52. You maybe wouldn't guess it from her rock-star attitude and exuberant one-liners ("I wanna see some rock, man—with his shirt off!"), but she spent most of her life in state-run institutions. She remembers being pushed around, being angry, and hardly ever interacting with anyone. Now she lives in a place called L'Arche—part of an international network of small, community-based residences—and has two housemates, one with a developmental disability that keeps him from living independently and one without.
Before coming to L'Arche in 2000, Wilson couldn't really communicate her feelings verbally; she'd pound on things with her fists and growl. In her new environment people asked her opinion on things and allowed her to make choices, such as what she wanted for dinner, and her reactions started to change. But Alex Conroy, executive director of L'Arche Chicago, says Wilson would revert to old behavior whenever she came home from her vocational program, which had her doing work along the lines of putting brand stickers on cups.
In 2007 Conroy helped enroll Wilson in the Arts of Life. Every week day Wilson spends five hours at the studio, where she plays and records music and makes art. One of her boom box paintings is the cover art on the band's first album.
"There's a lot written about what's wrong with the programs in Illinois, but I don't know if there's a lot of attempts to find the good ones," says Conroy. L'Arche and Arts of Life share the same philosophy, she says: each person's interests and talents—and that includes staff members—should be nurtured and shared in a larger community.
"People with disabilities, by necessity, live much of their lives in environments that are designed—and to a certain extent, controlled—by other people," Conroy says. That's especially frustrating, she says, if the residents and the staff aren't on the same page about the ways in which they deserve to be respected as adults.
At Arts of Life, the resident artists can choose how they spend most of their day. And they don't have to ask permission to head to the bathroom.
Wilson has trouble with some concepts, such as how to use money and how to travel alone, which keeps her from being fully independent. But after she came to Arts of Life she quickly acquired a new set of social skills.
"If someone would say something about a piece she was working on—like maybe you could add some more color—she'd rip it up or paint over it," says Denise Fisher, cofounder and executive director of Arts of Life. "But now she's able to listen to critiques, think about it, and make her own decision based upon that instead of either shutting down or getting super-mad."
Now she pounds on drums. Well, on one drum. And it was her idea to play it. "I hear it in my heart," Wilson said this March during a segment on WCIU profiling the band. The drumming helps Wilson connect with the band's other drummer, an Arts of Life volunteer. "They have to really be in sync with each other to play at the same time," Shuquem says.
The physical act of making music is therapeutic, according to Greg Stasi, a neuropsychologist at North Shore Pediatric Therapy. He says it reduces stress and boosts processing speed by stimulating a number of senses at once, from the tactile to the visual and auditory.
"Any presentation of information increases cognitive awareness, but when you have something with multiple stimuli, like music, the synapses become more sensitive, so the brain will respond more quickly and be able to work at a quicker pace," Stasi says. "The act of repeating words over and over again, and being encouraged to speak in a format that's fun and engaging, can also help with memory retention and speech."