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.”
When Ryan Shuquem became Arts of Life’s art director in 2006 he quickly noticed how much some of the residents enjoyed the drum circles Fisher arranged. An artist and musician himself—he helps run the Reversible Eye Gallery in Humboldt Park and plays with circus-punk marching band Mucca Pazza and his own band, the Loto Ball Show—he got the Arts of Life Band off the ground the same year.
The band has its shining moments during live shows, but it also runs into technical problems. Some of its members sing exceptionally loud and others exceptionally quietly, so adjusting the sound just right is a trial. “They don’t always know to say, ‘Hey, turn me up,'” Shuquem says. And they don’t always sing directly into the microphone.
But what the band lacks in technical proficiency it more than makes up for in stage presence. Last year, when they opened for the Loto Ball Show at the Whistler in Logan Square, “the Arts of Life Band blew my other band away,” Shuquem laughs. “Twenty-three people didn’t get in.”
Shuquem recalls how a city-sponsored performance of the Arts of Life Band was cancelled last year because the organizers—Shuquem doesn’t want to say who—were nervous that the band would be heckled by drunks. But that’s never happened. “I think that’s a thought that’s pretty prevalent, that we need to be protected from drunk people,” Shuquem says. “But 100 percent of the time our audiences have welcomed us with open arms. Everyone is always like, ‘You guys are awesome. This rocks.'”
Shuquem describes the Arts of Life band members as “five musicians who are able to drive themselves and seven who are not.” (Driving, he says, is a significant indicator of processing speed.) Shuquem drives. So do two guitarists, a drummer, and a bassist/vocalist/keyboardist. The band covers a range of genres, all spun through an indie rock filter. There’s the rap-inspired “Happy and Proud,” sung by Mike Marino as a tribute to his kidney donor, and the rock ballad “Puppies and Babies,” sung by Kelly Stone and inspired by an Arts of Life session with a social worker on what makes you happy. (“Puppies and babies / They are soft / Warm and smooth / They are cuddly / Cuddle and hug / I love them.”) Fisher points to the improvement Stone has shown since joining the band. “He came to us with very little language because of his autism—not that he couldn’t talk, but because he didn’t understand the value of using language, so he would become very physical,” Fisher says. “And now he’s singing onstage.”
When I played “Puppies and Babies” for local DJ Dave Duchek, without telling him anything about the band, he said, “It’s kind of quirky. It reminds me of something Beck would do in the studio just fucking around, churning out little ditties. Who is this?”
Local glam rock legend Bobby Conn, who has shared a bill with the Arts of Life Band, including a Pitchfork afterparty last summer, says they remind him of the 60s all-female outsider rock band The Shaggs. “They have a similar songwriting aesthetic—honesty,” Conn reflects. “I wish I could write songs as directly.”
The Arts of Life Band is part of a growing lineage of American musical acts that include performers with disabilities. In 1987 Bill Gage—who has Down syndrome and a mesmerizing voice—began fronting the rock band BILL with his brother John, an early collaborator of Stephin Merritt of Magnetic Fields. In 1988 the Kids of Widney High (named for a special ed high school) formed in Los Angeles, and its songs have been covered by bands including the Yeah Yeah Yeahs. The late Chicago icon Wesley Willis, who suffered from schizophrenia and was known for his intricate ink drawing of city scenes, came up in the early 90s, and songs of his such as “Rock and Roll McDonald’s” became standards of the era’s underground music scene.
John Gage of BILL says it’s hard for some people, including booking agents, to picture what to expect from mixed-ability bands. “But once you see us functioning as a band, when Bill grabs the mike and starts talking to people and singing and rocking out and doing what he obviously, clearly, loves to do, it doesn’t seem unnatural.”
“I guess people are always trying to look for descriptions, and I’ve thought of the movement in terms of a new kind of punk rock,” says Shuquem, who got the band a gig opening for a side project of guitarist Greg Ginn, who was the lead songwriter for seminal punk band Black Flag.
“These are people who have been alienated from the mainstream for a long time, and are now playing in bands, being included on compilations, getting press,” Shuquem says. “And they don’t care what anyone thinks. They’re just up there to have a good time.”
The way Arts of Life got rolling in 2000 had nothing to do with music. Denise Fisher, who was then managing a residential program, noticed that one of her charges, Veronica Cuculich, was coming home extremely agitated from her workday sorting bottles. So she asked Cuculich what she’d rather be doing.
Cuculich—who became one of the original Arts of Life band members and who died last year at age 79—was “super-creative,” Fisher says. “She would take, like, 5,000 bobby pins and try to create an art piece in her hair. So one day we asked her, ‘You seem to like art—what about being an artist?'”
Fisher started doing art projects with Cuculich as a cool-down activity after work. When she realized that about 20 other residents—a third of the house—were coming home with similar behavioral issues, she offered them all a chance to paint too. “I just saw how limited their lives were,” Fisher says. “And I thought, ‘This sucks; I would be freaking out too.'”
Within ten months—with a bit of her own money, a loan from her parents, and ten interested residents—she founded Arts of Life, a cooperative of sorts where residents could act creatively and share in the decision-making, including the hiring of staff.
Fisher was then 30 years old, part of a new generation of support professionals. Her older colleagues were touting the improved conditions at state institutions and the emergence of smaller-unit housing and “sheltered workshops” that offered what’s now called “prevocational training.” Fisher was less impressed. “Sheltered workshops were a creative idea in the 70s because people weren’t doing anything all day locked in an institution,” Fisher says. “But it’s really just busy work. Practice sorting these colored poker chips and we’ll find you a job—and the job never comes.”
One advocate for the disabled I spoke with argues that making art all day is also busy work. Yet the artists at Arts of Life display and sell their work—at a dozen Starbucks outlets and at venues such as the Judy A. Saslow Gallery and the Kinzie Corridor Art Walk. “We use art as a tool to teach things that are important to people—dignity, self-efficacy, independence,” Fisher says—things the residents hadn’t necessarily been thought capable of learning.
At Arts of Life, Shuquem and volunteers contribute to the songwriting process—finding loops in GarageBand, helping the band members talk out and rhyme lyrics, and singing with some of them onstage to help them remember lyrics. Andrew Martinec, a volunteer guitarist, recalls what it was like working with Wilson on “Shark Attack.”
“We really wanted to have a Jaws theme in the beginning, at a really peaked volume, and Jean said, ‘No, you have to start it slow—it has to build to somewhere. If we play it really loud in the beginning where is it gonna go from there?’ She said, ‘You just gotta listen to me.’ And that’s one of the best parts of the song. It’s like a rock explosion.”
Another song, “Around the World,” was selected for the second volume of Wild Things: Sounds of the Disabled Underground, a series released by Heavy Load, an English punk band that has two members with developmental disabilities. (The 2008 documentary Heavy Load focused on the band’s ongoing “Stay Up Late” campaign to encourage caregivers to work later shifts so their charges can get a taste of nightlife.)
“Around the World” is a call-and-response routine Shuquem does with band member David Krueger, 48, who has Down Syndrome. They improv about places they’d like to travel to (Turkey’s been one, and so has hell) and Krueger goes out into the audience, getting people to join in. “I’m shy,” Shuquem says, “and when I go places with Dave it’s easier for me to interact with people. When we do ‘Around the World’ I’m following his dance moves.”
“If we look back 50 years, the societal approach to people with disabilities was ‘out of sight out of mind,'” says Shawn Jeffers, executive director of Little City, a private provider of housing and services for people with disabilities. “People were considered uneducable.” Jeffers worked 23 years for the state of Illinois; during a visit to the Dixon State Hospital in the early 1980s he witnessed crowded wards, inadequate clothing, and “biters” who were dealt with by having their teeth pulled, often without anesthesia.
“People used to be warehoused and provided with ‘sheets and eats,'” says Tony Paulauski, executive director of the advocacy group the Arc of Illinois. “Feed ’em and put ’em to bed.”
It wasn’t until the election of President Kennedy, whose sister Rosemary had received one of the first lobotomies in 1941, that Washington started to change its approach to disabilities—one change being federal funding for programs such as special education. “After many years, we of course realized that kids should be going to school with their friends and neighbors rather than being segregated,” Paulauski says.
To help commemorate the 50th anniversary of JFK’s inauguration this past January, Arts of Life was invited to exhibit its work at the Kennedy Center in Washington D.C. But for some disability advocates, it was a tough time to feel celebratory. Even in good times, Illinois has ranked low when it comes to how much money it spends on programs outside its own institutional system. And this year, as Illinois prepared to release its next fiscal-year budget, the state faced a $2.2 billion deficit.
A 2008 report out of the University of Colorado, The State of the States in Developmental Disabilities, ranked Illinois 43rd in the amount of money it spent on community programs versus state institutions. A 2011 update released in February dropped Illinois two spots to 45th—and listed it behind only Texas and New Jersey for the largest number of people living in state institutions. (In what some disability advocates see as a positive development, Gov. Pat Quinn announced this year the closure of two of the state’s eight institutions for the developmentally disabled.)
“Institutions aren’t the horror stories they were in the 70s—they just don’t provide the chance for people to interact with people who aren’t disabled,” Fisher says. “Some people want to live on closed campuses and work in sheltered workshops. We just want to make sure that’s not the only option.”
The state budget was finally passed in June, and Paulauski says community programs weren’t slashed as drastically as their advocates had feared—but “we’re not out of the woods yet.” Because of the state’s budget woes, the time community providers must wait to be paid for services already provided keeps getting longer and is now about six months on average. “Wouldn’t you be fearful if your paycheck was delayed that long?” Paulauski says.
Fisher opened the first Arts of Life studio (on Grand near Damen) with $15,000, but she had to raise $50,000 to launch a Glenview studio in January 2010. “When we opened the Chicago studio ten years ago, the state was paying us on time, every month,” says Fisher, whose facilities provide daytime vocational services to about 50 people. “But now that we’re not getting paid on time I have to account for at least three months, sometimes six months, of expenses.”
Because Arts of Life has no assets to borrow against, Fisher explains, the state put it on an expedited payment schedule, and checks arrived only 45 days late. But in August she received an email from the governor’s office telling her the wait would be extended—by how many weeks or months, it did not say.
The two Arts of Life studios operate on a total budget of about $385,000. When Arts of Life was launched 11 years ago it received 90 percent of its funding from the state; that portion is down to 65 percent, and Fisher says that every year she tries to drop it another 5 percent. The balance comes from grants, individual donors, and entertainment-driven fund-raisers, such as the Half Acre Chili Cook-Off on November 5 at the Chicago studio.
“I’d like to see the state raise their expectations for what people with disabilities are capable of—meeting their basic needs, but also taking risks so they can grow as individuals,” Fisher says. “Jean [Wilson] used to be in an institution. Nobody thought she’d be a rock star. Now she’s signing CDs at events.”
One night last March at the Hideout, Wilson ordered a nonalcoholic Clausthaler and asked a bandmate if his mom would take them to go see the film Little Red Riding Hood. Then she broke into a howl—her stage name is Jean the Wolf. The band was out to celebrate the release of its second album, Around and Around, and premiere its music video for “Shark Attack.” Filmed at the 31st Street beach, it features Wilson and Krueger taking turns wearing a shark costume and attacking people in the water. There’s a lot of fake blood.
I asked Wilson why she wasn’t performing in the shark costume. She said, “David tore the eyes off and tore my fins off. What am I gonna do now for Halloween?”
Local mixed-ability band DHF Express—part of the arts-based Project Onward—were the opening act, and the Arts of Life musicians were the first ones on the dance floor. During a cover of “Down Home Blues,” David Krueger got down on one knee and started headbanging.
When the Arts of Life Band took the stage the dance floor filled and began to sway. Wilson pounded hypnotically on a drum and chanted, “Let’s get this band going.” The keyboards came in, then crashing guitars. The bouncing of 12 bodies made the Hideout stage seem even tinier than it is.
“As a live music fan, I won’t be able to see things the same way again. And I mean that in a good way,” said Chris Charles, who came to see headliner Bobby Conn and knew nothing about the Arts of Life Band. “And I also just started to play music, so to see them up there and have joy and support and doing it for the purest reasons—it’s pretty invigorating.”
As for Conn, he took home a picture of him that Krueger and Shuquem had painted and brought to the show. “They really captured me,” said Conn. “That’s what’s so disturbing about it.” He sauntered off singing, “Puppies and babies . . . Puppies and babies . . .”
Like any band, the Arts of Life Band has dealt with creative differences and the kind of personal issues that affect performances. Kelly had a seizure the day of the record release show, and another member was dealing with a change in medication, battling voices in her head in the bathroom. But she was good to go come showtime.
Michael Dutka, who was at the Hideout show, got to know the Arts of Life while looking for places in the midwest to screen the Heavy Load documentary. He’s also technical director at the dance company Momenta, whose dancers with full use of their legs perform alongside those in wheelchairs—but he admits that it took him a while to get comfortable talking to people with disabilities. “Growing up, we were always told, ‘Don’t look at that person,'” says Dutka, 59. “But in time you realize that we’re all different, and we’re all human.
“This movement is picking up momentum. It’s 10:30 PM, and we’ve got people from group homes out enjoying themselves. This is a success.”