Neil Marcus, Whose Art Illuminated Disability, Dies at 67

Jennifer E. Engen

At each performance of his play “Storm Reading,” the writer and actor Neil Marcus offered his audience a reminder: “Disability is not a brave struggle or courage in the face of adversity. Disability is an art. It’s an ingenious way to live.”

Mr. Marcus, who had dystonia, a neurological disorder that causes involuntary muscle contractions and affects speech, starred in the play, which comically illuminated how he passed through the world in a typical week, through vignettes of him conversing with grocery shoppers, doctors and passers-by.

In 1988, when the show had its premiere at the Lobero Theater in Santa Barbara, Calif., people more often than not looked away from those with disabilities. “We’ve always been taught as kids we don’t point, don’t laugh, just basically ignore them,” Rod Lathim, the director of “Storm Reading,” said in an interview.

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

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

The success and longevity of the play, which toured throughout the country until 1996, turned Mr. Marcus into a pioneer of the disability culture movement. He called his work a reclamation of personhood in a world determined to deny people with disabilities their autonomy.

Mr. Marcus died on Nov. 17 at his home in Berkeley, Calif. He was 67.

His 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 mounted plays featuring disabled artists. Neil Marcus sent over samples of his writing 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 draft the play, whose cast of three originally also included Roger as “The Voice,” who portrayed Neil’s thoughts during his interactions (the role was later played by Matthew Ingersoll), as well as a sign language interpreter.

The show was physically taxing for Mr. Marcus. But it also invigorated him.

“There’s no drug, there’s no treatment, that is, in my opinion, as powerful as the interaction between a live audience and an artist on the stage,” Mr. Lathim said. “And watching Neil transform from that was astounding.”

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

Neil Marcus was born on Jan. 3, 1954, in Scarsdale, N.Y., the youngest of five children of Wil Marcus, who worked in public relations, and Lydia (Perera) Marcus, an actor. When Neil was 6, the family moved to Ojai, Calif.

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

But counseling gave him confidence. He attended Ojai Valley School, where he was often spotted zooming around in a golf cart. After graduating from high school as valedictorian in 1971, he traveled to Laos; when he returned, 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. With professional dancers, he participated in “contact improvisation” performances, which eschewed formal choreography and instead followed the seemingly frenetic movements of Mr. Marcus’s dystonia.

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

The Neil Marcus Papers, including his essays, poems and correspondence, are held at the Bancroft Library.

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

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

His poem began:

“If there was a country called disabled, I would be from there./I live disabled culture, eat disabled food, make disabled love,/cry disabled tears, climb disabled mountains and tell disabled stories.”

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