CARLSBAD — Longtime Carlsbad resident Scott Chambers spent three years helping his close friend, disability rights activist Neil Marcus, bring to life the late playwright’s autobiography, “I, Spastic” — a raw, funny and deeply personal account of a life shaped by dystonia and defiant creativity.
Chambers, 74, is a cartoonist, musician and author who met Marcus when both were students at Fairhaven College in Bellingham, Washington, in the early 1970s. Their friendship culminated in the production of Marcus’ memoir, which was released in print and audio formats earlier this year.
“As we worked on the book, I was referred to, half-jokingly, as Neil’s ‘able assistant,’” Chambers said. “I took his writing and, with his guidance, smoothed it out and extended it a bit. To be clear, I was not his ghostwriter. As the title suggests, the work is an autobiography. All the ideas and most of the words are his.”
Marcus, best known for his award-winning play “Storm Reading,” was a pioneering voice in disability arts and performance. He died in November 2021 at his home in Berkeley at age 67 from complications related to dystonia, a neurological disorder that causes involuntary muscle contractions and affects speech and movement.
In “I, Spastic,” Marcus explores his early life, including the onset of dystonia at age 8, his struggles with communication, and his emergence as a performer, writer and activist who challenged public perceptions of disability.
The audiobook opens with a recording of Marcus reciting his poem “Disabled Country,” commissioned by the Smithsonian’s National Museum of American History.
Chambers said editing the memoir was the longest writing project he’s ever taken on. The pair began working on the project together in 2018 — a painstaking process due to Marcus’ limited mobility and speech.
Making things more challenging, Marcus was precise in his language, often shortening passages that had taken Chambers hours and sometimes days to draft.
“It was very slow going — maybe six hours a day for three years,” Chambers said. “He typed one letter at a time with one finger.”
While slow and meticulous, Marcus was unflinching when discussing the more complex aspects of his life — depression, romance, jealousy and the tension between public admiration and private doubt.
“A lot of books about disabled people make them out to be one-dimensional heroes,” Chambers said. “Neil made a point of showing his full humanity. The book isn’t a tragedy or a triumph story. It’s readable, funny and honest — appropriate even for younger readers.”
According to Chambers, Marcus insisted on writing for a general audience and aimed for a ninth-grade reading level. The book was recently recommended on Maria Shriver’s Summer Reading List.
Chambers helped finalize the manuscript after Marcus died, with additional editing support from Marcus’ sister, Kendra, who also hired a copy editor to complete the project. Chambers said that while a few of Neil’s edgier lines were deleted in the final stages of editing, his voice and message were carefully preserved.
Marcus’ art spanned multiple disciplines — acting, poetry, dance and visual art — and always sought to push against the social stigma surrounding disability. “Storm Reading” toured internationally for eight years and was featured in an NBC television special hosted by Michael Douglas.
Marcus also appeared in an episode of the television drama “ER,” playing a disabled linguistics professor. The episode was directed by the show’s rising star, Anthony Edwards, also a disability rights advocate. Chambers was on set as Marcus’ assistant during filming in Burbank.
“Neil was successful — he had friends, he was an author, a playwright, a dancer, an actor, a poet. He literally did all those things,” Chambers said.
Yet Marcus often wrestled with how the world saw him.
“One of the biggest questions he asked himself: Are people opening doors for me because I’m a freak show or because they actually appreciate my work?” Chambers said.
Throughout his life, Marcus grappled with how the public perceived and labeled him as a disabled person. People stared or ignored him entirely, something Marcus believed was a reptilian fear in humans of anything perceived as different.
In college, Marcus attended classes and immersed himself in campus life. However, when he prepared to leave after two years, administrators discovered that he had never officially enrolled. For years, no one questioned his presence in classes — not even professors.
“They were embarrassed,” said Chambers. “But Neil said, ‘It’s okay. I came and got my education.’”
At this time, Marcus had lost the ability to walk entirely and began using a wheelchair full-time. Back in Ojai, Marcus started writing a newspaper column and worked on the film “The Other Side of the Mountain,” developing a friendship with screenwriter David Seltzer, who would later support his theatrical work.
In the book, Marcus also recounts his early surgeries and attempted suicide at 14, his role in the disability rights movement, and how deep brain stimulation (DBS) treatment — a series of electrical impulses delivered to specific areas of the brain — helped relieve some of his dystonia symptoms.
According to Chambers, Marcus’ physical presence defied expectations. A longtime dancer, Marcus would often perform onstage with Japanese Butoh dance groups across the Bay Area.
“He was very physically fit — his muscles were like ropes because they were tense almost all the time,” he said. “He was sometimes a showstopper on stage, challenging every notion of what dance could be.”
Throughout his life, Marcus experienced ups and downs in his ability to speak, which made him difficult to understand at times. There were certain words he wouldn’t use — not by choice, but because his physical limitations made them too difficult to say.
For example, he couldn’t say “Bertrand Russell” — the mix of R’s and T’s was impossible, Chambers said. But “Salvador Dali” came relatively easily.
“Rolls off the tongue,” Chambers said.
Marcus could also reliably say “garbanzo beans,” which his mother theorized was due to the shape of his epiglottis, Chambers said.
When interacting with Marcus, Chambers said the artist was often unpredictable.
“He was a very surprising guy. You could not predict what he would say next at all,” Chambers said. “He was entertaining and had insights into things that most people missed.”
Marcus often described disability not as a limitation but as a different lens for experiencing life. A line he frequently repeated at each performance of “Storm Reading” captured this view: “Disability is not a brave struggle or courage in the face of adversity. Disability is an art. It’s an ingenious way to live.”
Chambers, who described Marcus as “a comic, an epigrammist and a philosopher,” said the goal of the memoir — like all of Marcus’ work — is to dismantle fear and discomfort around disability.
“If he could expose people to disability in a positive way from an early age, the fear of difference would begin to evaporate,” Chambers said. “That was Neil’s mission — and I believe he succeeded.”
“I, Spastic” is available in paperback and audiobook formats on Amazon. The audiobook features Marcus’ real voice, as well as narration by his brother and a professional actor.
“Storm Reading” is available on YouTube. The “ER” episode featuring Marcus, “Of Past Regret and Future Fear” (Episode 20, Season 4) is also accessible online.
