Neil Marcus, whose art shed light on disability, dies at 67


With each performance of his play “Storm Reading”, writer and actor Neil Marcus reminded his audience: “Disability is not a courageous or courageous fight in the face of adversity. Disability is an art. It’s an ingenious way of living.

Mr. Marcus, who suffered from dystonia, a neurological disorder that causes involuntary muscle contractions and affects speech, performed in the play, which comically lit up the way he traveled the world in a typical week, to through vignettes of him conversing with grocery shoppers, doctors and passers-by.

In 1988, when the show premiered at the Lobero Theater in Santa Barbara, California, people with disabilities most often looked away. “We were always taught as kids not to point fingers, not to laugh, to just ignore them,” Rod Lathim, director of “Storm Reading,” said in an interview.

In contrast, “Storm Reading” encouraged the audience to laugh with Mr. Marcus about his experiences.

“Neil invited and greeted, and in some cases demanded that people watch,” Mr. Lathim said. “And so he brought them into his reality, which was not a handicap reality; it was a fact of his definition of life.

The success and longevity of the play, which toured nationwide until 1996, made Mr. Marcus a pioneer in the disability culture movement. He described his work as reclaiming personality in a world determined to deny people with disabilities their autonomy.

Mr. Marcus died on November 17 at his home in Berkeley, California. He was 67 years old.

Her sister Kendra Marcus said the cause was dystonia.

In 1987, Mr. Marcus and his brother Roger contacted Mr. Lathim, the director of Access Theater, a Santa Barbara company that regularly staged plays featuring artists with disabilities. Neil Marcus sent samples of his writings and asked Mr. Lathim if the theater would be interested in adapting them.

Their conversation led to the genesis of “Storm Reading”. Mr. Marcus, his brother and Mr. Lathim worked together to write the play, the cast of three of which also originally included Roger as “The Voice,” which portrayed Neil’s thoughts during his interactions. (the role was then played by Matthew Ingersoll), as well as a sign language interpreter.

The spectacle was physically trying for Mr. Marcus. But it also invigorated him.

“There is no drug, there is no cure, it is, in my opinion, as powerful as the interaction between a live audience and an artist on stage,” Mr Lathim said. . “And to see Neil transform from that was amazing.”

Scenes from “Storm Reading” were filmed for NBC as part of a 1989 disability television special, “From the Heart,” hosted by actor Michael Douglas. The cast gathered in 2018 for a performance at the John F. Kennedy Center for the Performing Arts in Washington.

Neil Marcus was born January 3, 1954 in Scarsdale, NY, the youngest of five children to Wil Marcus, who worked in public relations, and Lydia (Perera) Marcus, actor. When Neil was 6, the family moved to Ojai, California.

Neil was 8 when he learned he had dystonia, and he attempted suicide at 14 after a series of grueling surgeries, he said in a 2006 oral history interview for the Bancroft Library at the University of California at Berkeley.

But the advice gave him confidence. He attended Ojai Valley School, where he was often seen zooming in a golf cart. After graduating from high school as a valedictorian in 1971, he traveled to Laos; on his return he hitchhiked around the west coast and eventually took classes at Fairhaven College, part of Western Washington University, and elsewhere. He moved to Berkeley in 1980 and became active in the disability activist community there.

He explored art through various partnerships. Along with professional dancers, he participated in “contact improvisation” performances, which eschewed formal choreography and instead followed the seemingly frenetic movements of Mr. Marcus’ dystonia.

He also wrote a lot. He worked with University of Michigan professor and activist Petra Kuppers on the Olimpias Performance Research Project, an artist collective that highlights artists with disabilities in performances and documentaries. Their conversations about disability as art were published in a 2009 essay, “Research in Drama Education: The Journal of Applied Theater and Performance”. The two have also written a book, “Cripple Poetics: A Love Story” (2008), which features poetry and photographs highlighting the physicality and sensuality of disability.

Neil Marcus’ documents, including his essays, poems, and correspondence, are held in the Bancroft Library.

In addition to his sister Kendra, Mr. Marcus is survived by another sister, Wendy Marcus, and her brothers, Roger and Russell.

In 2014, the Smithsonian National Museum of American History commissioned Mr. Marcus to write a poem dedicating his online exhibit “EveryBody: An Artifact History of Disability in America”.

His poem began:

“If there was a country called disabled, I would come from there. / I live the culture of the disabled, I eat disabled food, I have sex with the disabled, / I cry disabled tears, I climb mountains for the disabled and tell disabled stories. “


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