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Reading Storms, Embracing Life: A Remembrance of Neil Marcus

Reading Storms, Embracing Life: A Remembrance of Neil Marcus


Steven E. Brown


“I’m a human bridge in a moment of time, spanning as far and as relevant as my

thoughts will carry me.”

Neil Marcus to Esther Ehrlich, 2004


One late night last November, my wife, Lillian Gonzales Brown, and I, were stunned to learn of Neil Marcus’s death. Neil (Jan. 3, 1954-Nov. 17, 2021) was a friend, co-conspirator, and joy to be around. I met Neil in early 1991, a few months after I left my job directing an independent living center in Norman, Oklahoma, and moved to Berkeley in late 1990 to work at the World Institute on Disability. One of my new colleagues gifted me a ticket to see a play they thought I’d enjoy, called “Storm Reading.” The play starred Neil and two other actors, all signing or verbalizing Neil’s words based on years of his diary. I loved it!

At that time, I’d been talking about Disability Culture for several years, mostly in Oklahoma. For the first time, watching “Storm Reading,” I experienced Disability Culture being performed right in front of me. I was thrilled. What I loved most was the humor and there was a lot of it. 

My still-favorite skit is Neil rolling up to a Burger King drive-through window and placing an order. With his speech impairment, Neil and the person waiting on him have trouble communicating—but after a series of comic interactions, the Burger King “employee” finally gets it right. Cracks me up every time.  Lots of other skits, vignettes, and observations make up “Storm Reading,” a version of which is available on YouTube.


Not long after that, I sat in a line to see a local singer, Betsy Rose. I noticed Neil in line near me. I introduced myself, let him know I’d recently seen his play, and it didn’t take long for us to realize we had a lot in common. We also discovered we lived within a few blocks of each other. Soon after our first meeting, I visited his apartment, a Disability Culture treasure trove, full of his writing, pictures, and disability memorabilia of all kinds. We remained friends, though he remained in Berkeley and I moved, first to New Mexico, then Hawaii, California, and Arizona. In fact, Neil and his partner at the time, Petra Kuppers, also an artist and scholar of disability culture and art, visited with Lillian and I, in Hawaii, when, among other activities, they talked to one of my classes and led a community performance. 

Neil and I didn’t communicate often in the past few years, but we maintained an email correspondence and shared our various ventures. I wanted to know what he was up to as I began work on a still-in-progress book about Disability Culture. 

Since his death, many friends, colleagues, admirers, co-conspirators have shared stories and some pictures about Neil and his love and joy and dancing and swimming and simply living. 

In 2004, Neil was interviewed for the University of California at Berkeley Artists with Disabilities oral history project. Neil and his interviewer, Esther Ehrlich, broke new ground in how they conducted these interviews. Paying attention to how physically difficult it was for Neil both to speak and to write and observing his limited energy, they came up with a plan for how to conduct these oral interviews. In the lengthy introduction to their conversation, Ehrlich described Neil as, “an unusually creative man, with a wildly active, associative mind and expressive body. In planning for our oral history interview, a central question emerged: How do we capture this artist in all of his boldness and complexity?”

They met several times in summer 2004 to plan how to do these interviews. They decided that when they met in person they would communicate via instant messaging on two computers placed side-by-side at the Regional Oral History Office. Neil decided he’d be able to say more via writing than speaking. But, they also: 

decided that it was important that Neil have the freedom to switch to speech whenever he felt that he would be able to express himself more fully in that way. Videotaping the interview sessions would allow us to preserve any verbal exchanges between us. It would also provide a record of our nonverbal communication and give Neil the opportunity to slip in a spontaneous bit of performance art, if he felt so moved. 

From these interviews, and other sources, I learned Neil was born in Scarsdale, near New York City in 1954, to Wil and Lydia Marcus, the youngest of five children, with two older brothers and two older sisters. His memories of New York included walking on the beach, which he continued to do after his family moved when he was six, to Ojai, in southern California. At that time he even thought of himself as a marine biologist—enjoying things like finding petrified whalebone on the beach.

His parents and grandmothers were artists and musicians. His mother was an actor/radio personality and actress. Neil recalled his father, who produced industrial films, had an unconventional, rebellious sense of humor. At an early age, while still in New York, Neil fell in love with musicals and memorized them. 

When he was eight, Neil went to summer camp. When he returned a month later, both his fists were involuntarily clenched, a hip was misaligned and his tongue wouldn’t cooperate. He was diagnosed with a form of dystonia, a neurological disorder that in Neil’s case, led to spasticity, involuntary movements and difficulty speaking.

At the time of Neil’s first symptoms, several medical interventions were performed to destroy some of the nerves in his brain that were sending mixed-up signals to his limbs. After a third surgery he seemed to be cured, but soon thereafter spasms returned. Much later, in “Storm Reading,” Neil said, “Some people, when they see my twisted frame, dystonic disarray, embrace the storm. Their eyes light up and they rush to hug me as a long-lost brother, as if embracing a storm was food for their soul. I can teach you to read a storm.”

In the Berkeley oral interviews discussing his younger years, Neil recalled his parents’ Ojai home as a hotbed of creativity. Artists of all kinds visited, including at a weekly Friday night poker game where many of the players had been on the 1950s Hollywood blacklist. He remembered that even  though he was only 8 or 9, they’d let him play with them. 

A friend of his mother’s, Beatrice Wood, was the last living Dadaist, an avant-garde art movement. She was known as the mother of Dada. Wood, who died in 1998 at the age of 105, was also the inspiration for the Rose character in the movie Titanic, though she was not on that ship. Neil recalled she wore Indian saris and talked about her love life. He also said he remembered hundreds of people like that and one of the things he learned in the Ojai environment was that everyone has an incredible story.

As a teenager, several events that influenced him for the remainder of his life occurred at the age of 14. One was that while writing high school assignments, he realized he liked it and it was in high school that he began to think of himself as a writer, artist, and performer.  

Neil’s public speaking began in his senior year in high school. He learned the power of speaking from his heart and when he did that it had an impact on his fellow students. He also learned he could combine art and social change based on his own experiences. This belief stemmed as well, from another experience begun at the age of 14, when Neil’s father took him, not long after what Neil described as “a half-hearted suicide attempt” to co-counseling. 

Aspects of co-counseling remained with Neil for the rest of his life. This included a belief that we are never to act a victim or believe we are powerless. Neil also learned to see the goodness in everyone and view love as a basis for moving through the world.

As a young adult, Neil moved to Berkeley in the late 1970s. He was attending a junior college near LA and his roommate brought him to Berkeley. On that trip, he learned about the Center for Independent Living and later moved to Berkeley to attend the CIL Computer Training Program.

In Berkeley, in the late 1970s and 1980s, Neil wrote lots of observations in his diary and began to write and distribute his Special Effects newsletter. He described this newsletter as “writing about what i saw and felt and what the vision of disability might be…like a new kind of jazz ………” 

I recall being introduced to Special Effects on my first visit to his apartment.

The 1980s was also when “Storm Reading,” which came directly from his diary, was produced. He toured from 1988 to 1998 in over 300 places throughout the world. He recalled, “It changed my life and taught me that I can influence the world.” 

One of the ideas and most well-known of Neil’s writings is that “disability is not a brave struggle or courage in the face of adversity, disability is an art.” This is in “Storm Reading,” and has been reproduced multiple times in many other publications.

Another of Neil’s pieces that has become famous is his poem, “Disabled Country.” I asked him once if he remembered when he wrote it. He said he didn’t but that it was sometime in the mid-1980s. When the Smithsonian Institution created the online website exhibit, “EveryBody: An Artifact History of Disability in America,” in the early 2000s, they contacted him about using this poem. It follows (there is also a video of the poem on YouTube):

Disabled Country (n.d.)

by Neil Marcus

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.

If there was a country called disabled,
Then I am one of its citizens. I came there at age 8. I tried to leave.
Was encouraged by doctors to leave. I tried to surgically remove myself from disabled country but found myself, in the end,
staying and living there.

If there was a country called disabled,
I would always have to remind myself that I am from there. I often want to forget. I would have to remember…to remember.

In my life’s journey I am making myself
At home in my country.

Neil and Petra Kuppers, who I mentioned visited us with Neil in Hawaii, were together as a couple for several years. They wrote about their relationship in a book called, Cripple Poetics: A Love Story

Petra also described Neil’s pivotal 2013 role in the beginning of a group of artists in the Bay Area swimming together as an art project. Neil needed to exercise more but didn’t want to do it in the usual way. Petra wrote:

What did work for him, though, was performing for a camera, to an audience. Neil bought a small underwater camera and invited his collaborators to come with him and take photos of him underwater…we worked out that this project had a lot of juice and created a meaningful experience for many people. So we created a conceptual frame that included but went beyond self-care and called the project Salamander, as many of us had strong mythical associations with artful water play and with the myth valency of creatures like salamanders.

Petra and Neil are sitting side-by-side in their wheelchairs in or just outside a building in Honolulu. Petra, a smiling woman with short hair and glasses, is wearing a bright yellow top and wearing a lei as she gazes at Neil, to her left. Neil, a man with short hair and a beard, both dark with some gray mixed in, is wearing a white shirt and a lei, and gazing mischievously toward Petra. Courtesy of Petra Kuppers.
Petra and Neil are sitting side-by-side in their wheelchairs in or just outside a building in Honolulu. Petra, a smiling woman with short hair and glasses, is wearing a bright yellow top and wearing a lei as she gazes at Neil, to her left. Neil, a man with short hair and a beard, both dark with some gray mixed in, is wearing a white shirt and a lei, and gazing mischievously toward Petra. Courtesy of Petra Kuppers.

When I asked Neil in recent years about his current work, he emailed me a link to a 2015 essay by graduate student Chelsea Miller. She wrote:

What is disability? Performance artist, writer, and actor Neil Marcus  encourages his audience to rethink disability as something that is not medical or physiological. Marcus aims to live artfully: non-medically, non-stereotypically, and full of soul. “It requires a lot of creativity to do life.”

Or, to put it another way, as Neil did in the 2004 interviews, “maybe being who you are is the greatest dramae (sic) ever to take place.” 

Thanks Neil, for including me in the drama. I am one of many who both miss you while celebrating how you gifted us all with your life.



Betsy Rose.

Kuppers, Petra and Neil Marcus. (with Lisa Steichmann, photographer). (2008). Cripple Poetics: A Love Story. Homofactus Press,

Kuppers, Petra. (2018). “Writing with the Salamander: An Ecopoetic Community Performance Project,” in Angela Hume and Gillian Osborne (Eds.). Ecopoetics: Essays in the Fieldpp.118-142

Marcus, Neil. “Disabled Country,” EveryBody: An Artifact History of Disability in America. Smithsonian Natural Museum of American History. Retrieved from

Marcus, Neil (nd). “Disabled Country” video. Retrieved from

Marcus, Neil, ed., “A Limited Edition Collection of SPECIAL EFFECTS Newsletter,” (Santa Barbara, CA: Access Theatre, 1988).
Marcus, Neil. “Neil Marcus: Performance Artist.” Interview by Esther Ehrlich in 2004. Oral History Center, The Bancroft Library, University of California, Berkeley, 2006.
Interview date(s) 2004. {Note: in interview Neil asked for Esther’s full name and title so it would be written into record: p. 57: < Esther Ehrlich, interviewer/project manager of the Artists with Disabilities oral history project, Regional Oral History Office, UC, Berkeley.>

Marcus, Neil.  Storm Reading. (1996).

Marcus, Neil. Storm Reading. (1988). Access Theatre. See “Celebrating Storm Reading” Nov. 7 2018. Retrieved from

Miller, Chelsea. (August 18, 2015). “body/freedom/art”: Rethinking disability through art.  graduate student in Public History, University of Massachusetts Amherst. Retrieved from:

Sullivan, Meg. (March 30, 1989). “Storm Reading”: Disabled Man Uses Own Experiences in Play Seeking to Dispel Prejudices. Retrieved from:



Steve Brown, an older, smiling, man with graying brown beard is shown in his office in Arizona, wearing a sleeveless, “Access is Love” purple tank top.
Steve Brown, an older, smiling, man with graying brown beard is shown in his office in Arizona, wearing a sleeveless, “Access is Love” purple tank top.

Historian Steven E. Brown (PhD, University of Oklahoma, 1981) is Co-Founder, with his wife, Lillian Gonzales Brown, of the Institute on Disability Culture and retired Professor of Disability Studies, Center on Disability Studies (CDS), University of Hawaii. He is an individual with a disability and family member of individuals with disabilities. In 2002, he moved to Hawaii and began working at CDS. He retired as a Full Professor and returned to the mainland in 2014, though he continued teaching online through 2019. His books are Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride (2003); Surprised to be Standing: A Spiritual Journey (2011); and Ed Roberts: Wheelchair Genius (2015) for middle grade readers which can all be found at:

He’s also published many articles and presented on disability rights and culture throughout the U.S. as well as in Canada; Germany; Hungary; Korea (via remote video) Japan; Norway; Saipan; Sweden; Taiwan; and Thailand. He’s currently working on a book about Disability Culture.


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