All Eyes on Neil Marcus: A Champion of Disability Visibility Through Artistry

Published January 3, 2022

Ground-breaking actor and playwright Neil Marcus passed away in his home in Berkeley, California on November 17th, 2021. According to the artist’s sister Kendra Marcus, his death was due to dystonia, a hyperkinetic neurological disorder characterized by involuntary muscle contractions which result in tremor-like movements, a condition Neil was diagnosed with at 8 years old.

Neil Marcus was many things in his life: playwright, actor, poet, performance artist. And Marcus would be the first to tell you to go ahead and add one more title to that list: disabled. Marcus is perhaps best known for his play Storm Reading, a slice-of-life journey through a disabled man’s day that made visible what most of society had made a good effort to ignore: what day-to-day life is like for people with disabilities. Following Marcus through conversational vignettes, Storm Reading invited viewers to live in Marcus’s world for a bit, and that included sharing in the humor of everyday situations. Never stoic or preachy, Storm Reading encouraged laughter, and with it, relatability and visibility.

Rod Lathim, Marcus’s collaborator and director of Storm Reading perhaps summed the artist’s intentions up best:

“Neil invited and welcomed and—in some cases—demanded that people look. He brought them into his reality, which was not a reality of disability; it was a reality of his definition of life.”

And once Marcus invited the audience into his world, they could not look away. The play premiered at the Lobero Theater in Santa Barbara in 1988 and then went on a national tour that ended in 1996. Marcus’s work even made it to a broader audience when scenes from the play were filmed as part of From the Heart, a 1989 NBC special about disability hosted by Michael Douglas, with further exposure on NPR and NBC’s The Today Show. Then, three decades later, the cast reunited for one last performance at the John F. Kennedy Center for the Performing Arts in 2018.

After Storm Reading

This notoriety in the ’80s and ’90s brought Marcus to the forefront of the “disability culture movement.” Within the context of that movement, he saw Storm Reading and indeed all his work as a reclamation of personhood in a society that tended to deprive people with disabilities of their autonomy and humanity. Marcus himself puts it best in this poem from 2014:

“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.”

After Storm Reading finished its run, Marcus sought new creative outlets to tell those stories, to tell the story of the disabled experience, and to bring more visibility to that experience. He worked with professional dancers to explore the medium of dance through the body of a disabled person. This collaboration resulted in “contact improvisation” dance performances in which the unpredictable movements of Marcus’s dystonia were a feature of the show, not a bug. These performances left all formal choreography behind to let Marcus’s natural movements take center stage, making his body, his movement, and his disability more visible.

Later, Marcus moved away from writing for the stage and toward writing essays and poetry. He began working with the Olimpias Performance Research Project, an artist collective that partners with performers with disabilities. As a result, many of Marcus’s thoughts on disability as art were published in a 2009 essay, “Research in Drama Education: The Journal of Applied Theatre and Performance.” He also collaborated on the 2008 book Cripple Poetics: A Love Story which explores the physicality and sensuality of disability via photographs and poetry.

When words would no longer suffice for this storyteller, he moved back to a visual medium, beginning a collaboration with New York sculptor Steven Lichty in 2010. Lichty too has dystonia, and the two collaborated on Study for Special Effects, an improvisational live performance featuring ribbons, rocks, and fire in which observers were able to reposition the artists’ dystonic impulses via verbal suggestions, bodily adjustments, and the employment of props.

If Marcus’s Legacy could be summed succinctly in just three words, it would have to be this: Disability Is Art. Looking back to Storm Reading, at every performance, Marcus proclaimed to the audience:

“Disability is not a brave struggle or courage in the face of adversity. Disability is an art. It’s an ingenious way to live.”

In Marcus’s case, his art brought visibility, to his life and to the lived experiences of so many people with disabilities, and that certainly was an ingenious way to live.

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