Neil Marcus, who’s had dystonia since the age of eight, appeared on the TV show ER several years ago, playing a genius with cerebral palsy who is assumed by the staff to be homeless and inarticulate.
”NBC was breaking new ground,” he says. “As little as ten years ago they would have hired a non-disabled actor who would act disabled, and he’d be portrayed as a victim or to inspire others. But the person I played had a strong sense of himself, and I had the freedom to move or talk any way I wanted. I didn’t have to hide my disability.”
Marcus’s acting credits include performing at the Kennedy Center in Washington D.C. with Lauren Bacall, and ten years in, “Storm Reading” his autobiographical show. The latter was produced by Access Theater, which puts on plays by and about people with disabilities.
“I have a passion for acting,” says Marcus. “It satisfies something in my rebellious nature to be seen acting in this spastic body.”
It was "Storm Reading" that landed him on ER: Anthony Edwards, a friend of Access Theater's producer, toured with the show for two weeks and later directed “Speaking Through Walls,”a half-hour documentary about it.
“They treated me just like any other actor,” says Marcus of the ER staff and crew. He rolls around the floor in a frenzy of enthusiasm, his legs scissoring the air. This is the way Marcus, now 46, has inhabited space for 38 years: he leans back, he rolls, and every so often a leg flies up in the air. Anthony Edwards says that eating dinner with Neil inspires people "to join in and eat with the same kind of recklessness.”
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 Neil's attitude about his condition, and his humor is infectious: during our interview I’m totally relaxed, oddly delighted by the weird and interesting shapes his body forms cutting through space.
This positive attitude came from his family, most of whom are involved in one way or another with his career. His brother helped write the script for “Storm Reading”and for a time performed in it; his sister sometimes serves as his agent.
In “Storm Reading” Neil and two other actors portray his experiences as a person with dystonia whom others frequently misjudge as having a cognitive disability. Skits depict encounters with strangers in the laundromat, on the street, and in a supermarket, with snippets of poetry and dancing interspersed. The play has been performed over 200 times in the U. S. and 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 the up-close-and-personal kind of interaction that I was fortunate to enjoy. I’d seen Neil around Berkeley and the disability community for years, and I must confess I made the same assumptions about him as the people in his skits. I had no idea that a brilliant artist lived in his wild, unruly body. But ten minutes into our interview I stopped perceiving Neil’s slow speech patterns as cumbersome, and saw the human being in this unconventional body, a person who feels deeply and who conveys those feelings vividly, with facial expressions and head movements.
In addition to “Storm Reading,” Marcus has written several plays, including “My Sexual History” and “The Art of Human Being,” which received the 1993 Isadora Duncan Award from Dance Bay Area for “Outstanding Achievement in Sound/Score/Text.” His writing appears in several anthologies, including the World Institute on Disability’s “Just Like Everybody Else”; “Making Your House Accessible,” published by Berkeley’s Center for Independent Living; and in a disabled poets’ anthology, “Towards Soloman’s Mountain.” He self-published “The Princess and the Dragon,” a fable, and frequently serves on panels throughout the country addressing topics related to disability, art, and accessibility.
“Disability is not a ‘brave struggle’,” says Neil, “or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.”
It's no surprise that his hero is Sidney Poitier, who broke through Hollywood’s racial stereotyping to become one of the leading actors of our time. “I think that a disabled person acting is not just an actor,” he says. “A disabled person on the screen is a statement. As we gather a greater audience, I think the world will change for the better. We will one day have our own Xenas, Seinfelds, and Agent Mulders. Our time will come.”
Videos of “Storm Reading” are available free from Dystonia Dialogue, One East Wacker Drive #2430, Chicago IL. For information on dystonia see www.dystonia-foundation.org.
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