By Sarah Fenske
By Danny Wicentowski
By Lindsay Toler
By Danny Wicentowski
By Danny Wicentowski
By Jessica Lussenhop
By Lindsay Toler
By Lindsay Toler
There are many ways to fight for social change: marching, shouting, stripping. Joan Lipkin has tried them all, most memorably in 2004 when she enlisted 51 other women to help her protest the war in Iraq by lying down stark naked on the roof of the City Museum in the shape of a peace sign.
But Lipkin has always preferred the theater. On this sunny September morning she's about to launch the fourteenth season of the DisAbility Project, known as the DP. It is one of the few theater groups in the country that produces original shows and promotes disability rights. Under Lipkin's direction, actors have put together a collection of sketches based on experiences from their own lives. Once an audience sees what life is like for a disabled person, Lipkin believes, they'll think and behave differently.
"The theater is a departure point," Lipkin says. "Everything cracks open."
This is the cast's first meeting in its new rehearsal space, the sanctuary of the Central Reform Congregation in the Central West End. The ten actors, eight of them in wheelchairs, sit in a circle and update one another about their summer: job-searching, apartment-hunting, accidents with their chairs. The atmosphere is familial. Lipkin calls it a "safe zone."
In February, as part of the Big Read Festival, the ensemble will perform its own version of Tom Sawyer. Lipkin has already arranged two shows for elementary school students in University City. All that remains is for the actors to memorize 30 minutes' worth of lines, songs and blocking, and rise to the dramatic challenge of playing characters vastly different from themselves.
"Most of our work has been about the culture of disability, but why not stretch ourselves?" Lipkin asks the group. "Why can't Tom Sawyer be played by someone in a wheelchair?"
The group members nod in agreement. "I'm tired of playing a disabled person," says Tom Allen, who has epilepsy and is blind in one eye.
"However," interrupts Fran Cohen, "I want to know how Tom Sawyer relates to disability." Cohen is an occupational therapist and the group's cofounder. Lipkin calls her the "den mother"; during rehearsals, she dispenses hugs, massages and stern reminders to visit the doctor and exercise.
"We don't want to be relegated to the way others see us," explains Aarya Sara Locker, a former clown with Cirque du Soleil, and now the project's associate director. She turns to the actors: "I want you to come in and kidnap this story and make it yours."
Lipkin and Locker pull out the script and begin to read the opening scene. A narrator starts to recite some witheringly dull facts about Mark Twain. Tom, Huck and Becky Thatcher, quickly bored, incite the rest of the cast to beat the narrator into silence with foam pool noodles. But when Tom and Huck announce they are leaving to go find some excitement, Becky wonders aloud why she and the chorus can't have adventures, too.
"How do I relate to this?" Lipkin asks the cast. "Same way an urban kid in U. City might. Strip away the language and the rural setting, and you've got this desire for something exciting in their lives. You say, 'Just because I'm driving around in a chair doesn't mean I don't want an adventure.'"
She and Locker move on to the first song. Locker reads the verses, and Lipkin sings the chorus: "I won't mope around and curse my luck, on the outside looking in." By the third go-round, all the actors have joined in.
"That's us," exclaims Ana Jennings, one of the group's long-time members, "on the outside looking in."
"Yeah," Stuart Falk agrees, "but now we're staring back."
"When I go to certain places," Lipkin likes to say, "I notice who isn't there."
Lipkin herself is difficult to ignore. Now in her mid-fifties, she abandoned a consulting career twenty years ago to become a playwright and director. Her curly hair is streaked copper and gold, and she wears spectacles with thick black frames. In rehearsal she usually goes barefoot, revealing bright green toenails.
Her plays tend to be about people who she feels have been overlooked by the theater establishment. Her early work focused on women, gays and lesbians. Lipkin says her 1989 revue, Some of My Best Friends Are..., was the first piece of gay and lesbian theater performed in St. Louis. (In the Best of St. Louis issue, RFT named it that year's best play.)
Under the umbrella organization, That Uppity Theatre Company, which includes the DisAbility Project, Lipkin's usually working on three or four projects simultaneously. Uppity's office is also her home, a Central West End apartment she shares with a cockatiel named Mr. Crisp.
This year, in addition to Tom Sawyer, she created Becoming Emily, the story of a nurse severely injured in an abortion-clinic bombing, and Beyond Stonewall: Why We March, in honor of the October 11 National Equality March on Washington.
"I get tired of seeing the same conventions and stories," she says. "I don't want to see conventional pretty people in the theater. I watch Project Runway for that."
Lipkin cannot point to one particular incident that inspired her interest in disability issues. Growing up in Chicago's Hyde Park, she was friendly with a one-armed fruit and vegetable seller. Much later, as an adult working with Uppity, she began to realize that disability theater was a natural outgrowth of feminism, in the sense that both women and disabled people are defined by their bodies.
In 1996 she attended a workshop at the Atlanta Center for the Arts with the playwright and director Joseph Chaikin, who had written several experimental plays about disability. Chaikin suffered a stroke in 1984, which left him with aphasia, a language disorder. "His speech was difficult to follow, but he was amazing, the model of an artist I'd like to be," says Lipkin.
"After his stroke, he and Sam Shepard wrote a play. It was like how Monet made cutouts after he started to go blind. To be an artist is to look at the world and uncover truths, to dissect the world and put it back together in a different way. Joe made me look at disability in a new way. I wanted to go back to my own community and do this."
Back in St. Louis, she met Fran Cohen, a teacher at Washington University School of Medicine's Program in Occupational Therapy, and proposed they establish a theater troupe to perform work like Chaikin's. Cohen liked the idea. "For people with disabilities to advocate for themselves is very empowering," she says.
Lipkin and Cohen's new theater company had its roots in the independent-living movement that started in Berkeley, California, in the late 1960s. Disabled activists had begun to demand better access to buildings and public transportation so they could work, attend school and live as normal lives as possible.
Some wanted to be actors, too. There weren't many disabled characters in traditional theater, though, and most directors were reluctant to cast people in wheelchairs. A few activists decided to create their own performance art. By the 1970s disability theater began to expand beyond California. The DisAbility Project was the first group of its kind in St. Louis.
In the fall of 1996 Lipkin was diagnosed with breast cancer — "ironically," she comments dryly. After she recovered, she began to work with her ensemble to create a repertoire of sketches. The group gave its first public performance in the spring of 2000 at the downtown Marriott for 300 attendees of the International Post-Polio and Independent Living Conference.
"It felt almost holy," Lipkin remembers. "We went out on the staging area and looked out at the sea of people. Some of them were on ventilators. I said, 'It's been a long day, wouldn't it be nice to do some deep breathing and gentle stretching as a way of starting the performance?'
"There was this sea of people, their eyes wide and expectant, and they were stretching. I thought, 'This feels powerful; they're going along with us.' They were open to the first thing I suggested. Something is really starting to happen."
Unlike a traditional theater troupe, Lipkin's actors travel to their audiences, comprised mostly of students and office workers undergoing diversity training. Lipkin understands that most of the people her group performs for don't necessarily want to be there.
"We use humor a lot," she says. "In one skit, 'You Going to the Show?', we have people in wheelchairs arguing about why they don't want to see the performance. It's very, very funny and completely upends expectations of the audience by acknowledging their discomfort."
It's also not above toilet jokes: In the skit's biggest laugh line, one character, when informed that disabled people do in fact go the bathroom, complains, "I know they go to the bathroom, but I know they don't go like we do. That's gross! And what if they have sex?"
There's one other disabled-theater company in St. Louis: Theatre Unlimited at the Jewish Community Center near Creve Coeur, which puts on musicals. But Lipkin prefers to produce original work.
"The DisAbility Project is community-based theater," explains Ann Fox, a professor of English and gender studies at Davidson College in North Carolina. Fox was part of the ensemble when she taught at Wash. U. "It's coming out of the community for the community to answer questions it has about itself, like the work Anna Deavere Smith does. It's pretty unique."
Offhand, Fox says, she can only think of only two other similar groups: Actual Lives in Austin and the Wry Crips in Berkeley.
Reid Williams, a cast member since 2005, once played Conrad Birdie in a Theatre Unlimited production of Bye Bye Birdie. Because of his spina bifida, he couldn't stand up and wiggle his pelvis. "I wiggled my chair," he says.
"I want to be a sit-down comedian," he quips, "but I ended up loving DP. It opened my eyes to a lot of things. The word 'handicapped' comes from an old English term for 'cap in hand,' like you're begging. That's why people don't like that term. I didn't know that till a few weeks ago."
There is, however, no language mandate for cast members. The term "disabled" didn't come into widespread use until the 1990s. Actor David Stech, who is 48, has no problem calling himself "handicapped." But nobody has embraced "crip" yet, the disability-rights equivalent to "queer."
Every rehearsal begins with the "sharing circle," where cast members talk about their lives. These discussions furnish the raw material for most of the group's skits.
A few years ago, Stuart Falk, who has multiple sclerosis, spent several weeks in and out of the hospital owing to a series of urinary-tract infections. He described the experience to the group as a trip to a resort — not quite Club Med, but Club Medicine.
"Ann Fox and I looked at each other, and I said, 'Stuart, tell us more, but stay within the metaphor of being at Club Med,' Lipkin remembers. "Ann and I went home and typed it up."
The result, a five-minute monologue titled, unsurprisingly, "Club Med," remains Falk's signature piece. "I find myself in the back of a warm van with a woman in uniform. She says, 'What's your name?' and begins touching me in different places. 'How does this feel? Here? Here? Now, do you have insurance?' OK, so that bubble bursts."
There are about 25 sketches in the repertory that are rotated in and out of commission depending on the group's audience and who happens to be in the current ensemble. "Club Med," for instance, would not be appropriate for an assembly of first-graders (particularly the part where the narrator bemoans his inconveniently timed erections) and most certainly wouldn't be as funny without Falk's New Jersey whine.
"We focus on what everybody can do and not get caught up in what they can't do," says Aarya Sara Locker, the associate director. "The hard part is not to assume what they can't do. It's easy to take people at face value, and everyone in the group is more than their face value."
Two years ago, Lipkin invited Sara Burke, a former dancer with the Katherine Dunham Dance Company, to help choreograph a number. "Aren't they in chairs?" Burke remembers asking. "Joan said, 'Yeah.' I thought, 'That shouldn't stop me.'
"Looking at it in terms of dance," she continues, "we couldn't have high-low choreography. Everyone had to stay on the same plane. So I taught them Dunham technique, which has a lot of body isolations. They raise their arms and do rolling of their heads and shoulders. Isolating the shoulders isn't easy. It was an exhausting workout, but it was really fabulous."
The final number, performed to Will Smith's "Gettin' Jiggy Wit' It," is called "Gettin' Jiggy" and is an audience favorite. Each dancer has an eight-bar solo where they wave their arms, bounce in their chairs or, in the case of Dianne Falk — whose MS severely limits her mobility — flash the peace sign.
"David [Stech] bounced so hard one day, he almost fell out of his chair," says Locker. "He was cracking up. And we found out exactly how much he could bounce. It's very freeing to find out how far we can go."
Margaret Jorgensen and her fellow thespians have built an arsenal of snappy comebacks for people who treat them like freaks or bombard them with (in Locker's words) "invasive empathy."
Cracks Jorgensen: "People see me in a chair, and my IQ goes down ten points."
"When I was a kid," Reid Williams remembers, "people used to put their hands on me and say, 'Are you OK?' I'd say, 'Are you?'"
Alison Chancellor tells people who stare at her, "Take a picture; it lasts longer."
"One time," says Stech, "this guy at a bar said to me, 'Why are you here? You can't dance.' I said, 'The hell I can't!' 'Venus' by Bananarama was on, and I spun my chair in circles all around the bar."
Twice now strangers at the Walgreens in Kirkwood have presented Williams with hundred-dollar bills. He's still debating whether to use the money to take Chancellor, his girlfriend, out to a fancy dinner or donate it to his church.
A few weeks ago, recounts Chancellor, "I went to Straub's, and this crazy lady gets down on her knees — I kid you not — and says, 'Bless you, woman.' Then she put her hand on my head, pulled out her Bible and said, 'You are healed!' I was ready to run her over with my chair."
Allen turned his own life into a monologue called "Tom's Story," about how his epilepsy and partial blindness, the effects of a brain tumor when he was seven, helped make him a painter. Jorgensen wrote a commercial for the Nitro-Shot high-speed wheelchair ("[Stop] only to watch able-bodied people covet your wheelchair!").
Chancellor has had cerebral palsy since birth. Ana Jennings' spine was permanently damaged by tuberculosis when she was eighteen. Together, the two women developed a dialogue called "You Never Know," in which they debate whether it's worse to have lost the ability to walk or to have never walked at all. They don't actually argue about this in real life, Chancellor says, but the point is clear: "We're not like a blue-light special. We're not all alike."
Lipkin describes the group's writing process as collaborative, but in the end, she's the one who has the final say about what goes onstage.
Because the DP's official purpose — as stated in its mission statement — is to educate and entertain, the collective sense of humor is a gentle one, designed not to offend anyone in the audience. There's none of the equal-opportunity offensiveness of South Park where the two disabled characters, Timmy and Jimmy, behave just as idiotically as everyone else.
Williams loves South Park. "It doesn't make fun of people with disabilities," he explains. "Handi-Boy [on In Living Color] does. He's a superhero with mental disabilities, and it's very, very ignorant."
Jennings in particular has what she calls "a gallows sense of humor. My husband [Steve, who also uses a wheelchair] likes the term 'crip.' He calls the little accessible parking guy Chris the Cripple. He's such a jerk. I laugh. On our fridge we have a Gary Larson cartoon of two people in chairs in a sanitarium saying to each other, 'You got struck by lightning, too?' We call it 'Steve and Ana's First Date.' I make a lot of jokes Joan doesn't appreciate. Sometimes I have diarrhea of the mouth."
One of the troupe's more didactic skits is called "Facts and Figures." The performers read snippets of offensive language ("That is so retarded," "Are you deaf, or just dumb?") and disconcerting facts ("Most people with disabilities live below the poverty line"). It ends with everyone shouting in frustration and then informing the audience, "Welcome to our world."
Real life is different and full of daily irritations and humiliations. None of the cast members works full-time. Jorgensen cobbles together a living from two part-time jobs, one as a reporter for the Ste. Genevieve Herald and the other on the assembly line at Ste. Genevieve Industries. Williams works part-time as a security guard at the Mildred Lane Kemper Art Museum. The rest are either looking for jobs or living off Medicaid or Social Security. "If it weren't for our families," says Stuart Falk, "we'd have nothing."
Many have to rely on unreliable public transportation to get around and maneuver their chairs through buildings that aren't fully accessible, including their own homes. Some live in nursing homes. Some depend on attendants to get them out of bed in the morning and take them to the bathroom. "Finding an aide that's halfway decent is incredible," Stech sighs. It's impossible to do anything spontaneously.
"Disability is a pain in the ass, literally," Jennings says. "You have to tilt the chair backwards sometimes, as a pressure-reliever."
Some of this has made its way onstage, but many of the sketches show the characters turning bad situations into jokes or triumphing over adversity. As Jennings puts it, "If you get too emotional, you're not taken seriously."
Many cast members say their favorite skit is one that's no longer performed very often, called "Go Figure." To write it, Lipkin collaborated with Katie Bannister and Rich Scharf, who have both since left the group. The skit juxtaposes Bannister's account of the first time she had sex after the car accident that left her a quadriplegic with Scharf's initial sexual encounters with men.
"It's the most beautiful two-person interplay," says Stuart Falk. "They're both discovering their sexual identity."
Chancellor played Bannister once in a performance of "Go Figure." "The look on my mom's face!" she remembers, laughing. "I was talking about sex!"
The actors have plenty of ideas for future sketches. Allen and Jorgensen want to write one about people like Allen whose disabilities are not immediately obvious. Cohen is interested in the siblings of disabled people. And Chancellor and Williams are playing with some ideas about wheelchair dating.
"It's the disabled version of Days of Our Lives," Williams jokes. "Like trucks in the sand, these are the wheels of our lives."
Call time for the first performance of the season is 7 a.m. It's the first Wednesday in October, and the venue is the Missouri Botanical Garden's quarterly staff meeting. It's a limited cast today; some of the actors didn't feel like getting up that early. Lipkin fully sympathizes. "I don't want to tell you what time I went to bed last night," she groans.
The sun is still rising as the performers roll through the automatic doors of the Ridgeway Visitor Center. The meeting doesn't start till 8:30, but Lipkin wants to give her ensemble time to adjust to the auditorium and do one last run-through. Locker and the assistant administrative director, Kevin Chestnut, escort the cast into the auditorium and start adjusting their microphones. Lipkin stays in the lobby to schmooze.
The DP is a time-consuming operation and runs on a shoestring budget, barely enough to pay the Internet, phone bills and salaries for Locker and Chestnut. Though the troupe gets paid on a sliding scale for performances, the money is distributed among the actors to cover transportation expenses.
Occasionally, some money comes streaming in, most recently from the Regional Arts Commission and the Christopher & Dana Reeve Foundation. But usually it's a trickle. "Corporate clients have not been lining up to donate," Lipkin explains. "It's easier to get funding for children with disabilities. They're cute."
Despite the early hour and the fact that they're at a meeting, the botanical garden audience manages to muster some enthusiasm: They laugh at Jorgensen's delivery of the bathroom line in "You Going to the Show?" and clap along when Jennings delivers the "DP Rap." ("Our worlds may vary, but it's my reality. My identity is more than a 'disability.'")
When it's over the cast takes a bow and intones, as they do at the end of every show, "We are among you, we are of you, we are you, do not be afraid." The audience responds with a standing ovation. Some women later say they had to wipe away tears.
The actors line up to introduce themselves and their disabilities, making sure to mention if they have jobs or are married. "Education!" Cohen prompts like an anxious stage mother from her seat in the front row.
"Our audiences don't always realize the people in the group are well educated," she explains later. "They also think disabled people are asexual."
Afterward, as the cast prepares to go upstairs to the garden's Sassafras café for breakfast, a woman stops to talk with Dianne Falk. "She thought our wheelchairs were props," Falk says, bemused. "She didn't know we were disabled until we introduced ourselves. That's one of the strangest reactions we've ever gotten. That and the middle-school girl who asked us, 'Can we catch what you have?'"
Over breakfast, the cast nibbles on fruit and scones and reflects on the performance.
"I think it went well," Jennings says. "They were laughing at the right time."
"Even though they were adults," Chestnut adds.
"You had such a level of focus and professionalism and such energy and presence onstage," Lipkin tells her actors. "I could not be more proud of you."