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Disabled Performing Pioneers

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I want my art to be so good, so powerful, that someone who doesn’t give a damn about disability comes to see me because I’m good, and goes away with a new consciousness about disabled people. —Cheryl Marie Wade, writer and performing artist.

A couple of weeks ago the New York Times ran a story about the changing roles of actors with disabilities on TV and in film, noting that, rather than overcoming tragedy in sentimental movies-of-the-week, these days people with disabilities play all kinds of roles, some that aren’t even related to their physical condition. I was struck, as always, by the fact that the mainstream media is finally catching up with reality: it’s been nearly ten years since Neil Marcus, a funny and brilliant actor with dystonia, portrayed a genius with cerebral palsy on an episode of ER. In fact, for over two decades Berkeley, California has been the hub of a thriving culture of performers with disabilities forging new roles and attitudes. After reading the Times article, I decided to brush off a few of the profiles I wrote years ago for the SF Bay Guardian and other venues and post them on my blog.

(Note: People’s ages and other dated data are obsolete.)

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I. Neil Marcus in the ER
I’m sitting on the carpeted floor of Neil Marcus’s Berkeley apartment, the place where he has space to be himself and therefore feels most comfortable. Throughout our interview, Marcus assumes a variety of positions: he lies, he leans back, he rolls, and every so often his leg flies into the air. This is the way that Marcus, who has dystonia, has inhabited space for 38 years.

Anthony Edwards of the TV drama ER describes eating dinner with Neil: “Neil Marcus {is} famous for his table manners and for making people join in and eat with the same kind of recklessness he does.”

In his bio, Marcus rewrote the medical description of dystonia to read: “Neil Marcus has flourishing dystonia, a neurological condition which allows him to leap and soar and twist and turn constantly in public, thus challenging stereotypes of every sort and making him very interesting to watch and sit next to during lunch hour.”

That pretty much sums up his attitude about his condition–and that attitude is infectious: after a short time in his presence, I find myself totally relaxed, watching with fascination and delight as his body cuts weird and interesting shapes through space.

He shows me his most cherished souvenirs: two cartoon drawings, one that depicts a director shouting, “Nice spasm, Neil!” The other shows three set chairs, one labeled “George,”–as in Clooney–another “Tony,”–as in Edwards–and one for “Mr. Marcus.”

”NBC was breaking new ground,” he says of the episode. “As little as ten years ago they would never have thought of hiring a disabled person–they would have hired a non-disabled actor who would act disabled. And that character would be portrayed as a victim or as someone meant to inspire others. The person I played had a strong sense of himself. Though the script was already written, I had the freedom to move or talk any way I wanted. I didn’t have to hide my disability or blend in.” It was the highlight of his acting career–so far. “It satisfies something in my rebellious nature,” he says,” to be seen acting in this spastic body.”

As veteran television and movie actors know, filming can sometimes be a tedious ordeal, with more time spent waiting than actually performing– but Neil was never bored. “I was so excited,” he says, rolling around in a frenzy of enthusiasm, his legs scissoring the air, “to be on television.”

Not that Marcus’s previous credits are chopped liver: he’s been interviewed by Maria Shriver on The Today Show and by Linda Wertheimer on National Public Radio’s All Things Considered. He performed at the Kennedy Center in Washington D.C. with the likes of Lauren Bacall.

Marcus’s acting career actually pre-dated the onset of dystonia: at the tender age of three he appeared on The Story Kitchen, a television cooking show for children. There followed a long hiatus from the footlights until, in the 1980s, he got serious about his career. He joined up with Access Theater in Santa Barbara to perform his autobiographical show, Storm Reading, in which he and two other actors portray his experiences as a person with dystonia whom others frequently misjudge–most assume he has some kind of cognitive disability. The skits depict encounters with strangers in the laundromat, on the street, in a supermarket; snippets of Marcus’s poetry and shots of him dancing, some in silhouette, are interspersed throughout. The play has been performed over 200 times, throughout the United States as well as in England. Excerpts were included in It Just Takes One, a 1999 television movie starring Edward James Olmos and Dennis Franz.

To fully appreciate Neil Marcus, though, it takes an up-close-and-personal interaction of the kind that I was fortunate to enjoy for the two hours of our interview. I’d seen Neil around Berkeley and the disability community for years, and, I confess, I harbored the same stereotypical assumptions about him as the people portrayed in his skits. Never would I have imagined that in that wild unruly body lurked the heart of a brilliant artist. But ten minutes into our interview, I began to view Neil’s physicality in a new way: I stopped perceiving his slow speech patterns as painful; I saw, first and foremost, the human being who inhabits this unconventional body, a person who feels things on a profoundly deep level, and who vividly conveys those feelings with intense blue eyes, facial expressions and head movements. A hug from Neil is unforgettable.

“Disability is not a ‘brave struggle’,” says Marcus, “or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.” Not surprisingly, his hero is Sidney Poitier, who broke through Hollywood’s racial stereotyping to become one of the leading actors of our time.

Will Neil Marcus become the Sidney Poitier of disability? He’s certainly trying. “I think that a disabled person acting is not just an actor,” says Marcus. “A disabled person on the screen is a statement. As disabled people gather a greater audience, I think the world will change for the better. I believe our time will come. We will one day have our own Xenas, Seinfelds, and Agent Mulders.”

Videos of “Storm Reading” are available free from Dystonia Dialogue, One East Wacker Drive #2430, Chicago IL.

 

II. The Body as Story: Cheryl Marie Wade

Time was when someone like Cheryl Wade was kept locked indoors, her crippled hands and wheelchair deemed unfit for polite company. These days, supported by an emerging disability culture, Wade rolls her high-powered wheelchair onstage, shakes her “gnarly” hands like five-fingered banners and shouts, “Booga booga! Mine are the hands of your bad dreams!” Mostly, the audience does not look away. Mostly, they’re also in wheelchairs.

“I don’t care about inspiring the able-bodied,” says Wade, flying in the face of tradition: disabled people’s stories, a la Helen Keller, are usually welcomed by the mainstream only when they serve to uplift. “I feel most honored,” says Wade, “when disabled people say I’m an artist of the community and they’re proud of me.” She adds, however, that “We do have a unique experience to offer the dominant culture. The gift of disability is the experience of not taking physical or mental abilities for granted.” This is exemplified in one of Wade’s poems:

Do you walk?
Do you feel your muscles tighten?
Do you drag bare feet through warm shag carpet?
Do you feel the muscle in back of your right calf tightening and loosening, tightening and loosening?
Do you walk?

“The able- bodied,” says Wade, “need to recognize their position of privilege–they can get from here to there without making a life story out of it.”

Wade tells her story in two solo performance pieces, A Woman With Juice and Sassy Girl: Memoirs of a Poster Child Gone Awry, both of which have played in the Bay Area as well as in Minnesota, Washington DC, and Los Angeles. With her wild mane of graying hair and her hooded brown eyes, Wade employs an extraordinary range of expression in her performances.

Wade grew up in an alcoholic, abusive household that psychologists call “dysfunctional” but which she calls “your typical American middle class family.” Upon learning that their daughter had juvenile rheumatoid arthritis, her mother drank herself into oblivion and her father disappeared for a week. Still, Wade credits her parents with fueling her ambition. “My father was a frustrated performer, and my mother a frustrated writer. My parents never took the chance to do what they wanted to do. I saw what not following your dream can do to people.”

Wade says the changes she’s seen in her lifetime in how society treats disabled people are extraordinary. “As a kid the only disabled adult I ever saw was a guy on the corner selling pencils. My story tells the story of the change: I’m someone who sat isolated, hiding my hands under a shawl. Now I get up on stage and say ‘booga booga’.” In fact, Sassy Girl is almost a chronological microcosm of the disability rights movement. In an anecdote of historical significance, she describes her attempts to enter the local movie theater in her wheelchair.

“Do you think,” the manager asked her, “that your cause will be helped by alienating people?” “My cause,” Wade replied in disbelief, ” is to see the movie!”

Watching Wade roll around her house or zip across the stage accompanied by the foghorn-like drone of her motorized wheelchair, one cannot help but notice her sense of physical ease. There’s no shameful hiding of the hands, no coy apology of any kind–in fact, Wade seems more accepting of her body than many able-bodied women. Indeed, she says an important focus of her work is female self-esteem, physical and otherwise. Being disabled, it turns out, does not exempt a woman from the problems female flesh is heir to. Wade is going through menopause, which she jokes is turning her into a “gnarly-boned crone.” And, like many women, she was sexually abused as a child by her father–the theme of A Woman With Juice. Wade believes this abuse was directly responsible for her disability.

“I related to the trauma with rheumatoid arthritis,” she says, acknowledging that while there’s a genetic proclivity to the disease, she believes that not being able to speak about her abuse triggered her immune system to turn on itself. “That may not be everyone’s story,” she says, “but that’s how I choose to see it. My body is the story of abuse. It’s my sorrow and my power. If at 46 you don’t have sorrow in your life and admit it, then I wonder what planet you’ve been living on.”

Wade thumbs her nose at the stereotype of the asexual disabled person. She is openly erotic on stage, simulating an orgasm that tops Meg Ryan’s in When Harry Met Sally, and says she has an active fantasy life: “Some of the things I’ve done in my mind with Bruce Springsteen, Al Pacino and a bottle of extra virgin olive oil are way over the edge of anything remotely connected to polite sex!”

When Wade read an editorial by an able-bodied man proposing that people with certain levels of disabilities be allowed to die, she responded with an angry poem, I’m not a reason to die. “I’ll be damned,” she says, “if I’ll let anyone judge this life as not quality. Thousands of non-disabled people would be very fortunate to have my life.”

That life includes a 16-year monogamous relationship with a disabled man. Though Wade shares her home with her mate, she doesn’t believe in “being sewn together at the hip. We’re good friends but we have our separate lives.”

Wade grew up in San Rafael, not so far away from Berkeley, but, she says, in terms of disability issues “it might as well have been the moon.” She came to Berkeley to attend college in 1977; in Sassy Girl she describes rolling down Telegraph Avenue, gazing with awe at storefronts she’d seen in the movies. In the play, when she reaches People’s Park she is so overwhelmed that she has a full-blown panic attack. She is rescued by an orange-haired, stetson-hatted woman in a purple wheelchair who hands her a joint and says, “Welcome to the community of crippled women with attitude.”

Wade also gets to live out vengeful fantasies in her plays: she gets even with one “Dr. Zeus,” who treated her as an interesting specimen rather than as a human being. When the sassy girl learns that Jerry Lewis, whose “vomitous kids” make her “want to puke or get a gun,” was nominated for a Nobel prize, she throws off the shawl she’s been using for years to hide her crippled hands and shouts “No fuckin’ way!” In real life, she says, the shawl came off gradually, over many years, “but onstage you need those kinds of dramatic moments.”

Wade sometimes performs in shows where several artists are spotlighted; I caught a performance when she came on after Afi Tiombe-Kambon, whose devastatingly powerful Black Diamond tells the story of a disabled African-American baby deemed useless by the slave-owner and killed before her mother’s eyes. Sobs reverberated throughout the theater as Tiombe-Kambon left the stage, a pair of crutches assisting her one stockinged and high-heeled leg. When Wade glided out from the sidelines in her wheelchair I wondered how on earth she was going to launch into her upbeat–and by comparison hilarious–routine.

“I realized that I had to do something,” she says, “to acknowledge that this is where we’ve come from. Disabled white babies have been killed too–that’s our history.” So in a soothing voice, Wade spent a full ten minutes easing the audience through the pain. “I hope that someday Afi will develop that piece into a full show,” she says. “Right now it’s like hitting people with a brick; it leaves them with nowhere to go. We can’t do anything about the disabled African-Americans who were slaughtered, but we can make sure that it never happens again.”

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Wade scoffs at terminology for the disabled like “physically challenged” or “differently abled.” “I don’t like euphemisms,” she says. “I use the word cripple with artists and with those who can deal with it. The meaning of crippled is about a bodily experience– it’s to the point.”

Afi Tiome-Kambon

Another of Wade’s pet peeves is when people ask her why she only writes about disability. “People ask Alice Walker why she only writes about black women,” she says. “But that’s her juice. Writing about disabilities is mine.”

A picture of Walker hangs on the wall of Wade’s pristine study, along with photos of her other heroes: an elderly woman playing King Lear from a wheelchair, writer Grace Paley, a pre-military Elvis, Theda Bara pulling on her long stringy hair, a gesture with which Wade identifies. Front and center sits a regal Frida Kahlo, whose work, Wade says, “had a major impact on me. She suffered enormous pain, and she never stopped being female.” She pauses thoughtfully before turning away from the wall. “When you’re younger you’re worried about whether you’re doing it right. Now I figure, we’ve only got one life. This is the package I’ve been handed to play with, to learn from, to celebrate with. My body is my story.”

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III. I Love Your Funny Face: David Roche

David Roche’s fondest fantasy is to win an Oscar for playing the leading man in a Hollywood movie, “just like the cuties who get Oscars for playing disabled people.”

Born with a slight discoloration around his eye that doctors said would disappear, by a year old his condition had only worsened. The Mayo clinic diagnosed extensive cavernous Hemangioma, a proliferation of cells. Part of his lower lip was surgically removed, and he was treated with radiation therapy, which left his face misshapen and scarred.

It’s not clear if such radical treatment was necessary. Roche’s father told him that before treatment his mouth resembled “a bunch of grapes,” but pictures he recently obtained from the Mayo clinic show only a slight swelling. In fact, medical science still doesn’t know enough about his condition to know if any of his treatments were absolutely necessary. Today it would surely be treated more conservatively.

In any event, Roche was left with a face that cannot be ignored: one side is striated with dark purple burn marks, his chin is crooked, his teeth have fallen out, and his mouth is only half there. Rather than hide in shame, Roche turned his face to his advantage, making it the centerpiece of a comedy routine that’s propelled him into places as high up as the White House; he even uses his disability to earn a living.

“My face has given me a great deal of humanity and compassion for the underdog and disenfranchised,” he says.

We’re sitting on the terrace of the pristine Mill Valley home David shares with his wife, Marlena Blavin, shaded by giant redwood trees, while he relates his story. He grew up in the Irish Catholic steel mill town of Hammond, Indiana, a close-knit community where he was accepted and protected. When new kids came to town and teased him, his friends defended him. His parents, while loving, were in denial; they never spoke about his condition, but simply pretended he was normal.

His real difficulties began during puberty. As the oldest of seven children he was expected to become a priest–but Holy Cross University of Notre Dame rejected him because of his appearance: he was told that he wouldn’t be respected as a priest. “Basically, they said I was too ugly to be a priest.” By now Roche says he’s figured out that the theological perspective of disability is as a manifestation of punishment for sin–but at the time, he says, “This was the voice of God speaking, and it left a deep mark on me.”

He was eventually accepted at St. Lawrence Seminary in Wisconsin, which he attended for four years before being kicked out as “the most secular student they ever had.” He believes it was actually his humor and rebelliousness that got him thrown out. Roche later used this experience to create a skit about “The Church of 80% Sincerity,” in which he pokes fun at Catholic customs and beliefs.

Roche’s 1990 acting debut was in a show called Lay Down Comedy held at Romantasy, a San Francisco sex boutique, for which he was paid twenty-five dollars. Since then he’s performed his solo act at conferences, disability venues, and schools in seventeen states as well as in Canada and Australia. His audiences are all over the map–Black, Native American, Chinese, New Age, gay. “My face is elite but my experiences are universal, ” he says.

He sees himself as having a unique part to play in disability culture: while he is visibly “different,” he’s able-bodied, and can travel and put on a low-tech show. “I symbolize disability,” he says, “and evoke people’s fears about it.”

Roche’s pet project is performing a piece for middle-school audiences called “Love at Second Sight,” developed with his wife, whom he met while learning massage. She heard his voice on the phone before she ever saw him, and imagined him as handsome; when they first met, she rejected him. In their performances he tells pre-teens what it was like for him at their age, and his wife talks about their meeting and relationship. “Kids never get to talk about this,” he says. “They’re all caught up in the Britney Spears kind of culture, and their whole life is absorbed with looks. It stuns them to see a guy who is on the margins of society yet successful.”

In October 1999 Roche performed at the White House for Disability Awareness Month. Before the performance, he was totally freaked out, thinking, “I’m a monster, that’s why they want to see me. But as soon as he stepped onstage, his years of professionalism kicked in, and he brought the audience to tears as well as laughter. Though he wasn’t paid for the performance, he says it represented a “huge breakthrough” for him.david_mirror_175pixel.jpg

Roche rarely looks in the mirror. When I ask him if he knows what he looks like, he says, “My wife notices any changes and she lets me know. She’s the guardian of my face.”

 

These people are pioneers in the field of performance art and disability. I’ve included links where possible, but some of my information may well be obsolete. It shouldn’t be too difficult to find them, though, so I hope readers will look them up and hopefully catch their acts. Believe me, you’ll never be the same.–MS

About marcys

I'm a writer. What do I write? Words. I write words.

4 responses »

  1. Thank you for resurrecting these disabled performance artists/pioneers. I’m a fan of all of them, but don’t often see their work discussed in areas other than disability related groups. Crip culture has a lot to say about living with disability, and those stories have much to teach about the human experience. Bravo!

    I put them up because they’re my heroes. Thanks for commenting.–MS

  2. Fantastic. Thanks.

  3. Yeah, what Kay said. Thanks.

  4. wonderful stuff. amazing. so empowering. have you heard of frankie krainz? a performance artist from kansas city who calls himself “mr. looneypants.” he writes the strangest plays and songs about mental illness. i saw a dance he wrote at the Folly Theatre in KC this April. it was about being on disability. wonderful! i think it’s on youtube.com as “disability romp” thanks for your blog. we’re all beautiful creatures!

    Thanks for the pointer. I’ll check out Mr. Looneypants!–MS

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