About Me

Credit: David Lance Goines

I've lived in Berkeley for over 20 years: I'm the girl in shabby black clothes who is always carrying a book. Hmm, that could describe half of Berkeley.


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Neil Marcus: Playwright, Performance Artist, and Disability Culture Activist

Neil MarcusNeil Marcus is an artist and an activist: his performance art is a political act and he lives his life as ongoing performance art. He describes himself as being “creatively endowed with disability”. If the power to change perceptions is what makes art important, Neil Marcus is one of the most important artists living today. His life takes place in  another world – “disabled country”, but his work offers outsiders a bridge to that world. In 1992, Marcus was awarded the United Nations Society of Writers Medal of Honor, Outstanding Achievement in Play Writing. Just about everyone who was watching TV in the late 90s saw Marcus’s revelatory guest appearance on ER.

Marcus is best known as the author and auteur of the play Storm Reading (excerpt here). Storm Reading was noted as one of Los Angeles’ top ten plays of 1993 by the L.A. Village View and toured around the U.S. for nearly a decade. Storm Reading was filmed for television and ultimately performed at the Kennedy Center. According to Wikipedia, “Storm Reading challenged audiences to reevaluate conventional ideas about disability and set a standard for performing artists with disabilities, and for performance access technologies.”

For those interested in Marcus’s background and how he surmounted the barriers that have traditionally blocked people with significant disabilities from participating in the arts, here is an in-depth interview conducted for the Artists with Disabilities Project archived at the Bancroft Library Oral History Office, University of California, Berkeley. This interview underscores the defining aspect of Marcus’s life that he uses art to redefine: each word must stand in for a hundred thoughts. Oral communication must be focused to a pinpoint, and body language must provide maximum support.

Marcus’s performance of his poem/play Disabled Country is available on YouTube.

This piece asks why the terms set by the “abled” world should be the standard for a disabled person. The experience of disability generates its own world, which is a disabled person’s home. Traversing dimensions to reach the alien world of the “abled” involves all the crafted gestures and deliberate distortions of art, which makes all disabled people de facto performance artists. What a profound truth.

Neil Marcus’s oeuvre also includes The Art of Being Human, PHreaksMy Sexual History, and Cripple Poetics. All of these works, like Marcus himself, defy convenient categories, but they are usually performance pieces involving dance, poetry, and abundant challenges to the audience’s preconceptions. Marcus also produced a wonderful book/zine called Special Effects: Advances in Neurology (available here) that was inspired by the ideas of Buckminster Fuller and modeled on Fuller’s experimental book I Seem to Be a Verb. An online “interactive” version of Special Effects collects ongoing annotations from readers. Marcus’s current work – dubbed Salamander – explores how the context of disability, and the opportunities for communication, changes in a different medium – under water. This is amazing, brilliant work.

You might notice love and sexuality as a persistent theme in these works. The physical expression of love has been a strong theme in the disability culture renaissance of the last two decades, and the work of Neil Marcus helped crystallize the issues and brought them to the attention of the general public. While researching Marcus’s work, I learned that my friend Larry Buchalter was one of the performers cast in a San Francisco performance of My Sexual History. Larry never told me about his adventures as an actor! I’ll have to interrogate him about this later.

In many ways Berkeley is ground zero for the Disability Rights Movement. I live only a few blocks from the Ed Roberts Campus which houses the Center for Independent Living. I’ve had to come to terms with my own physical challenges, and I realize how lucky I am to live where I do. It was important for me to bring up Disability Culture and the Disability Rights Movement as central to Berkeley’s cultural communities. I’m grateful to Neil Marcus for hosting my exploration of Disability Culture.

Neil Marcus requested that I write an article instead of posting my standard interview. I’m neither a journalist or practicing artist, so I can only pray this sketch does Marcus’s life work justice. Better yet, I hope this piece inspires a few people to investigate Marcus’s work further and to become advocates for Disability Culture themselves.

A video of Neil Marcus’s Storm Reading is available on Amazon.

Storm Reading 2

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