When Access Theatre started in 1979, the company was like something out of a Mickey Rooney/Judy Garland plot line-the absolute embodiment of grass roots theater. Artistic director Rod Lathim was 21 years old, and the first show was funded with $2000 from the City of Santa Barbara.
Eighteen years later, Access Theatre completed a dizzying ride that took the company to theaters all over the country, to the White House, and into millions of homes through television.
In between, Access Theatre produced 100’s of shows-many of them acclaimed original works, most of them musicals. Some dealt with disability issues; some simply proved that actors who have disabilities can be effective in any kind of role, any kind of show. Most of all, Access Theatre focused on inclusion, on creating a place for people to pursue their art without the everyday obstacles Company members were deaf, hearing, blind, and sighted; some used wheelchairs or other mobility aids, some did not, and ages ranged from eight to 78. Some company members were first-time performers, others were veteran professionals; a few including ER’s Anthony Edwards were famous. In this well-integrated environment, people’s disabilities (whether physical or otherwise) were just part of the mix, and everyone had to be flexible and inventive to get the job done. That’s the way theater is. The challenge, teamwork, and problem solving are as addictive as the applause.
In order to write Storms and Illuminations I spent two years interviewing more than 80 participants in the company about their experiences in the theater. The storytellers include a man who lived 25 years of his life in institutions because of his cerebral palsy: a veteran stage actress who had to reinvent her career after a gymnastics accident; a stubborn, able-bodied teenager who came to learn the importance of sign language: and a deaf grandmother who became a comedienne.
I also included sections on sign language, stage craft, and funding in the hope that Access Theatre’s experiences might inspire others-not just people in theater, but anyone who wants to include people or pursue a new idea.
Following is an excerpt from Storms and Illuminations, about the company’s best-known work, Storm Reading:
In March of 1988 a few days before Storm Reading opened at the Lobero Theatre, playwright/actor Neil Marcus and Rod Lathim sat in an all-night restaurant eating cake. Neil was saying earnestly” I want the world to hear my words,” and Rod was thinking “Nice dream, Neil.
It’s hard to pinpoint the exact moment when the dream came true. Maybe it was when Maria Shriver interviewed Neil on The Today Show or when Linda Wertheimer broadcast her interview with him on National Public Radio’s “All Things Considered.” Maybe it was the night Neil took his bow at the Kennedy Center with Michael Douglas and Lauren Bacall before a national television audience. Actually, the dream came true little by little, audience by audience in famous houses such as Miami’s Coconut Grove Playhouse, and in smaller theaters in Alaska,
Albuquerque, England, Vermont, and Vancouver. Over the course of eight exhausting, exhilarating years, the world did hear Neil Marcus’ words, and they are still heard today, as Neil continues to write and perform, and Storm Reading continues its life on video.
It’s the kind of success all playwrights hope for. It was all the more surprising that Neil should be one of the few who achieved it. Neil’s awkward speech, and body like an unbroken colt, can inspire the man on the street to glaze over or turn away rather than decipher what he has to say. Having said that, if anyone was going to make an international spectacle out of himself it would be Neil, and he had the ammunition to make it work.
That ammunition was contained in his diaries and writings, a ten-year collection of wise, funny, biting and empathetic observations about life, specifically his life. It wasn’t just Neil’s words that got to people. For many, the real punch of Storm Reading came from Neil’s appearance on stage as himself – a storyteller like no one had ever seen before. Night after night, as audiences sat with Neil and his memories, they also experienced him in real time, up on stage. They got a glimpse into his unusual life as it was happening. To their unlimited surprise many, many people saw themselves in Neil’s stories and others felt lifelong misconceptions wither away in two hours of staring at him. A lot of people cried when it was over, then stood in line to hug Neil in the lobby after the show. They felt relieved of a burden they didn’t know they had and they loved him for it. That’s one theory anyway.
Whatever the reason and there were probably many-Storm Reading was to become Access Theatre’s most widely seen and successful show. It brought the company international recognition and gave Neil Marcus his debut to the whole wide world. And the world, to its amazement, is very glad to know him.
“His body is curved like a sensuous pretzel,” Neil writes of himself, of the body he has been collaborating with since he was eight years old and his dystonia began. Initially, and for many, many months, Neil was told that his body’s rebellion was all in his head; to a little boy that meant the terrifying and lonely thought that he was crazy. Psychologists blamed his nervous parents, masturbation, and assorted repressed emotions. They noted with surprise that Neil’s symptoms failed to respond to a placebo, indicating that he was hanging on to them rather more tenaciously than expected. Meanwhile his body continued to reinvent itself in scary and inconvenient ways, until finally there was a name for it: dystonia musculoram deformans, a rare neurological disorder that causes severe, sometimes continuous, muscle spasms and involuntary jerks. It has no effect on the mind, except maybe to make a person think a little more about things. Neil was relieved to know that he wasn’t crazy. But he still had to deal with a million questions about his life, which doctors told him would probably not last into his mid-twenties.
Playwright Neil Marcus has flourishing dystonia, a neurological condition which allows him to leap and soar and twist and turn constantly in public, thus challenging stereotypes of every sort and making him very interesting to watch and sit next to during lunch hour. It rides him like a roller coaster at times. Not much is known about dystonia. Touch, understanding, and attention can be very helpful. Fear and dread are not helpful. The playwright has generalized dystonia which means it is all over him like a phone line that links world nations. It makes Neil very alive, but then again, aren’t we all??? -NEIL MARCUS
Even with his diagnosis, Neil had nothing is com form to, just a desire to live with meaning and style, he tried different things. He took up skateboarding he became valedictorian of his high school class; he went off to college in Washington State. He went on a soles journey to Laos, and threw himself onto the steps of the Oakland city hall to protest funding cuts for accessibility programs. Neil ended up living in Berkeley in an 8th floor apartment with a great view and access to the legendary Center for Independent Living, the hub of the nation’s liberation movement for people with disabilities. There he met other non-conformists and began to write voraciously, starting his newsletter Special Effects and accumulating the observations and words that would become Storm Reading
Storm Reading began to take shape as a play when Neil’s brother Roger, an actor, created a dramatic interpretation of Neil’s writing and taped it for Rod. Roger had a feeling that there was theatrical gold in the diaries Neil pecked out on his word processor, one drystone at a time. Rod saw a mix of insight, frustration humor and a Walt Whitman-esque economy of will that seemed perfect for the stage.
Even so, there was a massive amount of raw material that needed to be edited, shaped, and revised Ma all, the words needed a theatrical context. There had be a powerful stage picture to match the power of Neil’s words Rod. Neil, and Roger was to work on the adaptation and decided to create a kind of one-man show fi three players. Neil would appear as himself, which Roger would be huis voice and portray the many characters that populate Neil’s life and imagination, Kathryn Voice’s artistic sign interpretation was w into the action and she assumed some of the characters as well.
Over the next months, rehearsals were harder than anyone could have imagined, especially for Neil. As a first-time actor he needed hours of rehearsal, punctuated by breaks-sometimes every few minutes to rest his body. Tension made his spasms worse; it was nerve wracking to try to hit a mark the same way twice, or coax a line out of his reluctant tongue. Rod worried that Neil might be seen as a prop in his own show. At the same time, Rod could see they were creating something wholly original. Neil’s emotions fluctuated from an ecstatic ‘we’ve got a hit on our hands’ to this journal entry the following month: “I pulled the set over in rehearsal. The lights are blinding. I can’t see. I can’t move. I’ll never make it.”
“Acting on stage is like a giant pinball/bio-feedback machine.” Neil finally concluded. “The goal is to relax and act well.” Opening night Neil was so tense, sweaty, and dizzy that he collapsed during intermission. He took a Valium, then went on to finish the show to a standing ovation and the stunned response of critics. “A knock out,” said the Santa Barbara News-Press. “Dazzling, profound, ingenious.”
In June of 1989, the skies over Washington D.C. raged with the worst thunderstorms in 100 years, as Access Theatre arrived in town for the Very Special Arts International Festival. Storm Reading would play at the historic Ford’s Theatre, where Lincoln was assassinated. The week culminated in a gala performance at the Kennedy Center taped for broadcast as an NBC special “From the Heart.” Some 3500 people attended the taping, which featured appearances by festival artists, as well as two dozen stars including Mikhail Baryshnikov, Lauren Bacall, Lou Gossett and many others.
“It was a very heady time for us,” Kathryn Voice remembers. But Katie points out that the opportunity also came with one of the inevitable drawbacks of tele vision. “There’s always a temptation in the media to portray people with disabilities as heroic.” she says, “to go for the heartstrings. That element certainly brings in funds and audience, but it’s actually a very safe and mediocre view. Rod’s been brave enough to say, ‘that isn’t the vision I hold for this company,’ and his conviction was tested at the Kennedy Center,” Katie says. “We were rehearsing with Michael Douglas, who was introducing us on the show,” she explains. “At the end, the producers from NBC wanted him to somehow put this warm congratulatory arm around Neil, to milk the moment for all that it was worth. Rod was watching in the audience and I knew he was not going to like this idea. The producers were pretty big names, and I thought I wonder if Rod will say something?’ And sure enough he came right up onstage and without making a big deal about it, he quietly said, ‘we’d like to make another choice.’ So Michael just finished his words with his hand by his side, very respectfully. A lot of people might not have known that etiquette-wise it was not appropriate to touch Neil and his wheelchair in that way in a formal setting. So I was glad to not have that inappropriate message broadcast on national TV. I was glad we got to hold on to our integrity.”
When Neil’s dream of communicating with the world came true, it was hard on him in unexpected ways. As it turned out, acceptance into society tested his resolve as much as isolation had, maybe more. It was tough on his body and tough on his self-image as an unlimited person. “It was hard to ask for help,” remembers Neil, who normally lives alone. “I learned how to get help and hopefully to not be so scared. I needed more help caring for myself in order to do the play. I had to accept that.” And though Neil’s stamina and articulation as an actor increased with every performance, most nights it was still a battle on stage.
My shortcomings are being pushed in my face… maybe it’s OK to be weak, to stumble, trip or fall onstage. I mean, this play is my life. The event of doing it is really what my life is like. Why shouldn’t they see everything? Maybe this is unlike any theater ever before. It’s real. Theater might be life. I might be theater. -NEIL MARCUS, telex to Roger Marcus
Storm Reading traveled successfully off and on through 1996 to twenty states, Canada, and England. It had its Manhattan debut at the Tribeca Arts Center. It played at universities including Stanford and UCLA, and in theaters from Idaho to Ohio to Maine a broad diversity of towns and venues and an endless variety of conditions.
Though Storm Reading became a well-oiled machine, there was always the unexpected-broken equipment, lost luggage, and worst of all an electric wheelchair that emerged from baggage claim in pieces more than once. But most often the unexpected came from the audiences, who always had a strong reaction, usually good. “It’s easier to single out the few people who didn’t get it,” company manager Thom Rollerson says, “like the guy who thought Neil should be put into bed and spoon-fed. Some of the people that came to see Neil’s show would have walked out of their way to avoid Neil before they saw the show, and they come up to him afterwards and want to hug him. We witnessed many, many tears and testimonials of personal transformation, sometimes in the most unlikely places.”
In fact, with Storm Reading, gambling on an audience was part of the point. In Vancouver, at a performance sponsored by the founders of the Dystonia Medical Research Foundation, Neil took particular satisfaction in performing for a full house of medical professionals-shaking clinical views of dystonia and its limitations with living proof. When the company appeared at Manchester’s Green Room Theatre as part of the United Kingdom’s City of Drama Festival The Guardian responded with a review that echoed many other reviews throughout Storm Reading’s long touring life. “(Neil Marcus) captures the audience defiantly. unsentimentally for two hours of wildly funny, sharp philosophical musing on his and the human predicament. It’s an astonishing celebration of life. It’s an exhilarating, liberating experience.
Everywhere they went, the company used the opportunity to raise awareness of disability issues, giving what seemed like endless workshops, consultations, and press interviews, which often turned into impromptu therapy sessions. “The show got people to stop and think about what they are doing on the planet,” Rod says. “To ask, ‘am I using my time wisely? Am I communicating? Am I carrying baggage around I don’t need? This show is a great reminder to get over it and live.” “I had been using a peashooter to effect change in the world.” Neil says, “with Storm Reading I had a shotgun.
I have always maintained that disability is a never-ending struggle to achieve perfection. It is not a brave struggle or courage in the face of adversity. Disability is an art. It’s an ingenious way to live. Who would ever think of living that way if they weren’t disabled? –NEIL MARCUS
Neil says things in a way that people can understand. Access Theatre’s Storm Reading presented him in a way that was even clearer and more vivid. Yet, even well-meaning journalists, even those who saw the show, still used words to describe him such as twisted, wracked, dependent, tragic, stricken within curable dystonia, and confined to a wheelchair. Neil Marcus received critical acclaim in theaters that were inaccessible to him, where he had to be carried upstairs to reach the stage to receive his standing ovation. This is not just ironic, it is reality. But Neil also tries to see it all as an opportunity.
“It takes a great deal of effort not to be overcome by the sheer weight of discouragement and hopelessness that I as a disabled person feel.” he writes. “It’s scary to be real, to be vulnerable, to admit that I’m not happy all the time. If I can talk to another human being and tell them what’s in my heart, it helps, that’s meaning for me.
“Our lives-disabled people’s lives-provide us. in a unique way, with tools for living. Our lives give us knowledge which can be useful to others. Disabled people hold a powerful store of knowledge about coping with unfavorable and sometimes hostile environments. and creating a sense of self worth beyond one’s physical limitations.” Storm Reading proves this with an unflinching tour of Neil’s life, and closes with a challenge, an invitation to find grace and empathy:
When you walk into a room full of people and there’s a disabled person in the room and she scares you or you want to avoid him or she mystifies you or you want to reach out and help but don’t know how, when this happens you are on the cutting edge of liberation.
See a disabled person clearly and chances are you’ll see yourself clearly. That is when there are no limits. And there are no limits as to when that will happen. It will probably happen-now –NEIL MARCUS, Storm Reading
In 1991, the United Nations Society of Writers honored Neil Marcus with the Writers Literary Award and a Medal of Excellence. In 1993, Los Angeles’ Drama Logue magazine gave Storm Reading three awards for production, ensemble, and direction. In 1996, after nearly a year of not performing together, the cast reunited to tape two performances at the Lobero Theatre for television and video distribution. Back on the same stage where it debuted, lit for the camera, and supported by an adoring local audience, Storm Reading looked mature and polished. Neil was now, unmistakably, an actor, confident in his material and able to play off Matt and Katie with often subtle gestures. It seemed a fitting last performance. It did not turn out to be the last performance. Seven months later they all traveled to Atlanta to appear in the Cultural Paralympiad Festival, directly following the Atlanta Games, before an international audience of fans. During that same trip, a special performance was filmed for national television as part of the USA Network series “Erase the Hate” (since retitled “It Just Takes One”). “The work that I do with the arts reflects the respect that I feel towards all of life.” Neil Marcus says, “I have knowledge that people are good and that I am good. I didn’t always know this. The message we often get in society that we are worthless, unimportant beings is a lie. We are glorious, essential. intelligent human beings, deserving of absolutely the best from life.”
Author Cynthia Wisehart grew up in Santa Barbara, California where she danced in many local productions. She is a journalist whose work has appeared in the Los Angeles Times, Santa Barbara Independent, Santa Barbara News Press, the Philadelphia Daily News and ABILITY Magazine.