disabled culture

having a body; what is direction ?

disability is an Art

cultivating braille

cultivating braille
I listen to the waves at the seashore and watch them roll in. in and out. They never stop.
My mind wanders. I think of love. I smell the sea life air. I think of grains of sand slipping through my wet toes. I think of starry nights and streaming comets and glowing rounded moons. I think of thousands of fishes that will run with the tides at a certain season and time each year.
There are moments in my life when everything is so completely and totally understandable, all I can do is gasp in wonder and cry a special brand of joyous tear and try to tell someone all about it.
There is a postcard that I TREASURE. I found it in a postcard store in 1984. It totally says a lot of what I want to say. Maybe it says everything! !
the card stock is braille with braille dots as the postcard “scene” thats raised little “bumps”
on a white background. The effect is that you are sending this postcard to someone and its so complete that at first glance…it seems like nothing is there. To a sighted person, the card seems blank. Its all white.
Turn it over. In very small print it says ,
”I often imagine myself being here. Sitting on the beach,listening to the waves, feeling the salty air upon my face and tongue. Everything seems possible. i wish you were here”
so.. its not blank. The front is the poem translated into braille. Touch. speaks a language that is very real but is little known.  What could be more communicative than a fingers touch.
And the artistic statement is so strong . my words dont do it justice.

on point


  • Berkeley, CA, United States

following a storm

following a storm
Bio: Neil Marcus
Neil Marcus is an artist and performer living in Berkeley, California, USA. His books include Special Effects: Advances in Neurology (99read book online in reading commons) ​https://publication-studio.myshopify.com/products/neil-marcus-neil-marcus-special​​​  , and Cripple Poetics: A Love Storyhttps://www.youtube.com/watch?v=IaDaTcw7qsk​​​  , and  The Princess and the Dragon  (a ...:disable.d fable). His most performed play is Storm Reading​​​ Audo slidesho  https://youtu.be/qG_K-J9lC-8

Here's the chapter. Hope you like it all right....
First, here's the table of contents so you see how it fits in -- and remember
there are pictures.
Foreword by Michael Douglas
Author's Preface
Introduction by Anthony Edwards
1. Beginnings
2. Steven: Stagestruck
3. Lori: Speaking from the Heart
4. On Sign Language Interpretation
5. Robin and Leslie: Pas De Deux
6. Tamara: The Mermaid's Tale
7. Neil: The Storm
8. On  Stagecraft and Accessibility
9. Remi, Susan, and Leo: Three Plays
10. Anne and Clarke: The Dream Makers
11. Billie: Winging It
12. Jud, Tyler, Devon and David: A New Generation
13. On Funding and Support
14. Rod: Epilogue

“Storms and Illuminations: 18 Years of Access Theatre
by Cynthia Wisehart
Published by Emily Publications

neil: the storm
In March of 1988 a few days before Storm Reading opened at the Lobero Theatre
in Santa Barbara, 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. Maybe it was when Storm Reading received its final standing ovation
at the Cultural Paralympic Festival in Atlanta. Actually the dream came true
little by little, audience by audience -- in famous houses such as Miami’s
Coconut Grove Playhouse, and in small 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 whose
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. Literally. 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
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
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 rollercoaster 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
Neil Marcus
Even with his diagnosis, Neil had nothing to conform to, just a desire to
live with meaning and style, so 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 solo journey to Laos; he
handcuffed himself to a cable car in San Francisco to protest lack of
accessibility. He ended up living across the bay 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 Neil 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 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 dystonic finger at a time. Rod saw a mix of insight,
frustration and humor and a Walt Whitman-esque economy of words, that seemed
perfect for the stage. "There’s no fat on Neil’s work," Rod says. "He doesn’t
have the time or stamina to sit and type with one finger about nonsense. When
he speaks it’s direct and concise."
Even so, there was a massive amount of raw material that needed editing,
shaping, and revision. Most of all, the words needed a theatrical context.
There had to be a powerful stage picture to match the power of Neil’s words.
Rod, Neil and Roger went to work on the adaptation and decided to create a
kind of one-man show for three players. Neil would appear as himself, while
Roger would be his voice and portray the many characters that populate Neil’s
life and imagination. Kathryn Voice’s artistic sign interpretation was woven
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."
Two months later, Access Theatre gambled $13,000 on a one night stand at the
Doolittle Theatre in Hollywood. Funded largely by Michael Douglas,
screenwriter David Seltzer and producer Gary Goddard, the performance was a
showcase for executives at Disney, Warner Bros., Columbia, NBC and others
intended to generate more opportunity for Storm Reading. The performance was
greeted with a standing ovation, followed by…nothing. For weeks, Rod and
company wondered if they had lost the gamble, when gradually the phone
started to ring. Los Angeles based Mainstage Management International took
the show onto its roster, and secured the first crucial touring engagements.
A few more dates trickled in, and then a few more. Every time the company
performed Storm Reading there were more bookings. Through word of mouth its
reputation would continue to spread until people had seen the show across the
country from Honolulu to Portland, Maine.
In June of 1989, skies over Washington D.C. raged with the worst
thunderstorms anyone could remember, 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 would
culminate 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, Melissa
Manchester, Jim Henson, and Kermit the Frog.
Years earlier, long before Storm Reading was conceived, Rod had been in
Washington and had taken the guided tour of the posh Kennedy Center, never
imagining Access Theatre would perform there. "When I walked in there and saw
the set and the TV cameras, it hit me, we were really there," Rod says. He
walked out onto the theater’s terrace overlooking the Potomac and took a rare
chance to savor the accomplishment.
"It was a very heady time for Rod," Kathryn Voice remembers, "for all of us."
But Katie points out that the opportunity also came with one of the
inevitable drawbacks of television. "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
this isn’t the vision I hold for this company, and that 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. 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 on stage 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. It diffused the
producers’ desire to milk the moment for everything it was worth. 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 message be broadcast on national TV. I was glad we got to
hold on to our integrity."
During the week in Washington, Linda Werthheimer invited the cast to NPR
studios for an interview that aired with excerpts from the show on "All
Things Considered."  Back in Santa Barbara, the company phones began ringing
immediately, as calls came in from people who had heard the radio broadcast
and wanted to book Storm Reading. Meanwhile back in Washington, Rod and the
cast finished a round of press conferences and workshops, and at a party on
the White House lawn Neil shook George Bush’s hand, man to man.
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 learn 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
Neil kept writing, and inevitably the show kept changing to reflect Neil’s
new writing and his changes as an actor and a person. Rod continuously
reevaluated the text, adding things, cutting things, changing blocking, even
sets and costumes, as the production evolved. In 1989, Rod realized that it
was time for Roger Marcus to leave the show. For two years, the chemistry and
strong physical resemblance between the two brothers had been a magical
aspect of the show, and Roger had carried the load as the more experienced
actor. But the show had also come to be too much about Roger, too much of a
vehicle for him.
"Neil had grown tremendously as an actor," Rod remembers. "It was time for
Neil to come into his own as the focus of the play." Rod didn’t believe this
could happen without changing the show in ways that would not work for Roger.
Improvisational artist Matthew Ingersoll replaced Roger and Storm Reading was
reinvented for its next incarnation.
                "I remember the very first time I performed before a live audience in
Duluth, Minnesota and it bombed," Matt remembers. "Usually when the audience
is quiet Rod says it’s because they’re listening, but this time they weren’t
listening. It was a disaster. I thought this is it, this is the end for the
play." The "disastrous" performance received a standing ovation. So did the
next night’s performance at the World Theatre in Minneapolis, best known for
Garrison Keillor’s broadcasts.
As the new cast continued to work together, Neil blossomed in the spotlight.
With Matt’s comedy background the show began to lighten up. It also became
less predictable, which suited the improv-trained Matt, who used his skills
to help keep the play on track each night as the three actors developed an
almost telepathic rapport on stage.
"It makes the play very exciting and very immediate," Matt says. "More real.
With Neil, a line may take longer than you think to get out and the momentum
of the play might flatten out for a second, or a mark will be missed, or I’ll
drop a line, so the air will sometimes get let out of the balloon. But that
doesn’t have to be a bad thing," Matt says. "Sometimes the suspense is
thrilling," Neil adds.
"It gives us a lot of variety," Matt continues, "and you start rebuilding the
momentum immediately, or you take that mistake and use it. It may create an
opening for me to say something that will read as funny to the audience. You
have to think quickly; in fact it’s like what people say about car accidents
-- that time slows way down. Things would happen every night; Neil’s leg
would go up and he would hit us. He might end up being in a different place
on stage where he isn’t supposed to be. He spits when he talks; so you’ll be
in the middle of scene and all of a sudden you’ve got spit all over your
face. Now do you choose to ignore that or do you acknowledge it? Now I would
choose to acknowledge it, because the audience has seen it happen and that
happens in real life.
"With Neil it’s always fresh," Matt concludes. "Neil’s whole life is improv,
and the play is part of his life. I prefer it when it doesn’t go the same way
every night. Otherwise the play is driving you, and I’d rather we were
driving the play. We all looked forward to the little spontaneous moments of
magic that make it worth doing it over and over again."
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.
Backstage, when things got tense, technician Tal Sanders would go into his
Bob Dylan imitation; program director Daniel Girard would counter with Beavis
and Butthead. "It cracked Rod up and it was kind of a mantra for chilling
out," Tal says. Tal, Daniel, company manager Thom Rollerson, and technical
directors John Kelly, Ted Dolas and Kathleen Parsons traveled with Storm
Reading over the years, and helped Rod handle the ever-changing demands that
go along with taking a show on the road. 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," Thom 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 walk
out of their way to avoid Neil before they see 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
"In Reno we pulled up to perform at a school that looked like a prison," Rod
remembers. "We couldn’t figure out how to get in; we were dreading the
experience. It was an enormous wooden floor auditorium, no set, acoustics
from hell, uncomfortable bleachers for the audience. It was a Catholic high
school, and an Irish priest led a prayer before the performance. So we prayed
with him. We rolled out there onto this big bare, silent space. You could
have heard a pin drop. Then the kids caught on and began to laugh, and
support and clap. It was an incredibly elevating experience for all of us.
And it just proved we should never prejudge what’s going to happen."
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 limitation 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." After seeing the opening night of the company’s
five-week run at the Tiffany Theatre in West Hollywood, Mike Frym wrote in
Daily Variety, "An unforgettable perception altering experience…profoundly
revitalizes the audience ‘s sense of humanity…placing Storm Reading in the
‘must see’ category."
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."
Dear Neil,
I came home tonight and I told my parents of your performance. It’s not like
me to talk sincerely with them very often, but I found myself describing what
I saw you and your companions express today. What I saw was absolutely
extraordinary. You managed to touch the hearts of over three hundred
teenagers, which is no easy accomplishment. You opened many eyes today and
revealed to them the incredible power of the human mind and spirit and their
ability to overcome adversity. We can all learn so much from what you say and
I truly thank you for giving me the opportunity to learn from you. Someday I
wish I could be a part of something as worthwhile as what you do.
Frank, October 1994
Dear Neil,
My cousin Daniel has cerebral palsy. After watching you perform I called him
up to tell him what I saw and learned from the performance. For the first
time I was able to talk with my cousin, without the sense of being
uncomfortable or having the fear of saying something that would offend him. I
finally talked to Daniel as a cousin instead of a human with cerebral palsy,
who I had trouble opening up with. This was one of the greatest feelings of
my life and I would like to thank you completely for giving me that
Josh, October 1994
Dear Neil,
Your name reminds me of Neil Armstrong, but you are more handsome! Please
read on, this is not a love letter. I had the opportunity to see Storm
Reading yesterday. I saw the storm in you, I saw the storm that is you. You
are the storm that calmed everything that was disturbed and confused in me.
Thanx Neil. Wow!
You taught me that I should stop pretending what I cannot be and start liking
what I am. You have given me reason to smile every time
I go to Burger King
I travel in a train
I eat garbanzo beans
You are so rare Neil, I would have hated going through life without knowing
"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 with
incurable dystonia, confined to a wheelchair…Neil Marcus received critical
acclaim in theaters that were inaccessible to him, where he had to be carried
up stairs to reach the stage to receive his standing ovation. This is not
just ironic, it is reality. And it is still 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.
"Its 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 simple 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 all 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
"Every dream I ever had came true, the person I never thought I was or could
be…I am."
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 really, 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, which
directly followed 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
 SPECIAL DELIVERY. Playwright Neil marcus is back and triumphant
 in S T O R M  R E A D I N G       cynthia wisehart
Neil marcus had one or two ideas about celebrities and movie
stars,but he was on the whole more interested in his own mysteri-
ous self. It was a big subject and he spent a lot  of time watch-
ing his life, asking thousands of ordinary and sometimes
difficult  questions. He was a hound for reality, hunting it down
,gobbling up life in his gentle and voracious way. He wrote down
everything. He typed it slowly, one letter at a time  with his
spastic fingers.   last spring,after 10 years of this,it was all
made into a play,STORM READING. Starring Neil, his brother Roger,
and Kathryn Voice.  That was how he became somewhat famous and
how he got on the Today Show with Maria Shriver Schwarz-
enegger,and why there was fan mail and standing ovations. It was
thrilling.  It was just right for Neil because he had a lot to
say. It was an ingenius way to be heard.
Letter to SANDY GLEYSTEEN producer of N.B.C Sunday Today show.
Interview with Neil aired Sept.  11th 1988 and again on Dec 25th
as one of the years best interviews.
Dear Sandy,nbc tv, I know that there is a great pull,i feel it
,to make me look like an incredible human being...brave and cou-
rageous who has fought well this deadly disease that is so
I know you're in a rush to fill a deadline but I encourage you to
go slow with me.  I have a rich life and a rich philosophy and I
cant force it out and it does come out...maybe taking a walk or
talking in the park or riding a subway or answering a telephone
call or going to assemble some zerox. or having lunch in a cafe-
So you might get something in the first minute you meet with me
or it might take hours. we are meeting eachother and making a
connection. Human connection .
Usually tv is all about appearance and surface stuff . Thats not
what I want with this.
I think that living is so important and its not talked about and
it needs to be. Human connection. Important.
Theres space on my floor with an extra futon. Please consider
staying in my apartment while you're here.
What ive done with my life really is important but too many peo-
ple have too many preconceived notions about it. Those first
impression are way to limiting.. [Wow hes brave.does he really
have a life??  How amazing. He does so much. How tragic]
 I look forward to our meeting and seeing all this for what it is.
UNCOVERING REALITY!!!!!!!!!!!!!!!!!!!!!!!!!!!!Love Neil
STORM READING started out with a collection of Neils writing and
a tape recording 'radio drama' that he and his brother roger
thought might turn into something if it got into the right hands.
Enter Rod Lathim,director and founder of access theater
Ironically,at the time,Lathim  was trying to steer away  from
an inaccurate image as 'Disabled' theater. "'Enabled Theater is a
term Lathim prefers ,but that doesnt quite tell the story either.
'access' is really the word. for 10 years Lathim has been inte-
grating disabled and nondisabled performers in his productions.
access theater has consistently premiered original works by by
new writers ,disabled and nondisabled - a commitment no other
santa barbara theater company can match. Neil's writing was ideal
for access:Lathim loved its theatrical images as much as its
messages. as a director,Lathim likes the overlaping possibilities
of sign language,body language ,music and the spoken word. his
award winning productions have always been quite visual and STORM
READING is no exception. it was inevitable that STORM READING be
a collaborative work. Lathim knew of Neil marcus as a
writer/activist who published a creative newsletter from his home
in berkeley ca. he knew roger marcus from the santa barbara thea-
ter scene. but he didnt know they were brothers. VOILA.roger met
rod at a party and gave Lathim a sampling of the tape . it was it
was  roger's broad  range as a character actor that made it pos-
sible in many ways. the show was born.
Lathim added kathryn voice  ,a sign language interpreter and
access veteran,to the cast. working together,the four devised a
vivid expression of Neil's inner and outer life -a kind of one
man show for three players. STORM READING opened at the lobero
theater to astonished and approving audiences. everyone
involved was relieved. they knew it was good when they  put it
together,but how good?? would Neil be seen as just a disabled prop?
it was very good,but it was exhausting on stage because Neil's
body was working harder than anyone\elses/to do the same amount of
work. Neil was clear enough about  his message: Be
yourself,joyfully even when it hurts..but he didnt know that
when his dream of communicating came true ,it would be very hard
in unexpected ways. as it turned out,acceptance into a bigger
world tested his resolve as much as isolation had. maybe more. it
was tough on his body and really\tested/the notion that he could
be an unlimited person.
 ultimately Neil's new experiences had an effect on the STORM
READING that returns to the lobero theater this weekend ,because
it keeps changing. it's become it's own documentary.Lathim said.
the show  has been to santa ynez,to portland ,and to hollywood-
for one crazy night- and Neil kept writing the whole time. he was
still looking inside for the small truths.
people are watching  me. you're watching me all the
time. you're watching me when you're pretending not  to watch me.
you're watching to see if how well I DO,this thing called human.
...when you look in a pool of water.. you know how it shimmers and
reflects. there is a point when the image you are looking at in
the pool emerges from the pool  up out of the water to face
you. it comes  A L I V E....
 I have created my first script.  its about:
on 11/25/87 we did our first runthru of the script. at the school
of culinary arts' auditorium. on that day I asked the director,
who am I onstage. who is my brother.what is theater anyway. what
am I doing here?
I must concentrate...sometimes I forget where I am,what im do-
ing,where im going.on stage you must be aware of many things.face
out.head up.project.remember who you are. I forget that I wrote
this play.
they love it.we take them on a whirlwind ride.it flows.its
totally unexpected from moment to moment.its not 'comfortable'
.it doesnt fit any prexisting mold. WE'VE GOT A HIT ON OUR HANDS!
2/4/88 I pulled the set over one rehearsal .the suitcase stuck in
its shute.the lights are blinding.i cant see.i cant move.i ll
never make it I cant keep my eyes open.
 what an amazing time. interviewed for tv.dress rehearsals.discov-
ering what its like under lights..makeup. dressing rooms,cos-
tumes. the green room.wings.precenium arch.all this new.
everybody says,'break a leg'.
did one show this morning
did second show that night.opening nite.was so tired so tight
pouring sweat.at intermission I collapsed.they extended intermis-
sion so that id have more time .roger suggested I take a muscle
relaxant.i did.it helped tremendously.
netherworld backstage before play begins.its dark.people float
by,the tech crew,actors,directors.they know im nervous..about to
go 'l I v e' before thousands of people.all there is to say is
hi.how r ya? feeling is strong that ultimately im, going out on
that stage and that all I have is myself.
maybe thats why they cheer.
MET WITH DAVID SELTZER [writer producer of PUNCHLINE] ON 3/13/88
DISCUSSED BIG PLANS. micheal douglas' support is being sought.
L.A.'S hottest pr firm is doing the work for our showcase on may
17th. people tell me what a great work ive  created.
the phone man told me hes not really doing all that he wants to
be  doing but he  sees that I am.
on may 5th and 6th we had showings at the santa inez auditori-
um.first show was for high school students who felt either scared
or bored .im not sure. lots of things went wrong,like the set
fell down,i fell down,i couldn't get my lines out..but it worked
out well anyway/we made an extra effort to put them at ease . a
young woman afterwards came up to thank me. I said thank you
too.she said,'you make it easy'.
they all appreciated it.i figure that its all about learning!!
Solvang is where we stayed overnight.at some royal hotel.i wan-
dered round town before saturdays performance.watched candy mak-
ing.ate danish  pancakes. cabbage   .watched tourists and a
parade of RANCHEROS/wealthy landowners who were marching on hors-
es through those valleys for days. it was very depressing.had a
good chowder dinner at a smorgasboard.
I am starting to f e e l this show as I do it.it feels like a
high voltage roller coaster ride with every seat in the house
wired to the generator and I control the power.
                            Los Angeles
May 18th,THANK GOD ITS OVER!!!!!!!!!!!last night,yesterday was l
o n g.we drove to hollywood from santa monica.that was easy.we
found the theater.we parked the car.unloaded our stuff..walked in
the theater it was lovely.retired to our dressing room . the
union is very touchy tight atmosphere no do it yourself had to
point to every thing that needed doing in and around set .its was
lilly tomlin's dressing room,air conditioned.pink carpets.black
marble counters.lots of room.great.at noon we break for lunch.
hotel time. tight schedule.eat be back at two in costume and
makeup for filming by nbc. and lighting cue runthru. PANIC mom
took the car. roger needs to eat.i need to eat.my food is in
boxes in the dressing room. time is running out. mom arrives. she
checked in hotel but is very upset by the valet parking. rogers
upset.wendy is upset cuz rogers yelling dont touch my makeup
kit..arguing about parking.
we get our room.it has'nt been cleaned. I eat my
lunch.noodles,muffin and banana yam drink.roger eats in restau-
rant describes how painful it was ,confusion generated by order-
ing simple things.  we dress and put on makeup.maid cleans room
meanwhile. were back at theater by two.'hi,im bill anderson the
house carpenter.pleased to meet you.ive heard so many good things
about you.good luck.
crew not ready til 3. nbc tapes  this wireless to my back.we do a
scene for film.i freak.it jabs me.i start spazzing out.
roger  says,'whats wrong?this is not how we rehearsed it./then we
do a three hr runthrough every step cued with lights through
computer. tiring. were all getting edgy.break at 6 for dinner.im
exhausted.scared.two hours til curtain.nbc filming getting
dressed again at seven before curtain .DILEMMA/PROBLEM im tired
and tight.if I have to fight this for the opening,i might die.
yet if I take a drug  i'll make it through but it'll affect my
acting.  WHAT TO DO? I take it. I eat noodles and tunafish sand.
nbc films our preparing for opening.just ignore us.
act like were not here.
ok. curtain at 8. its 8.      rod encourages us to just do
it,throw away  our cares.         go.   so we go.we  do our
best.after 2 hours.its over. GOOD. we do questions and answers.
people line up front stage to greet us. reception in lobby .were
invited to russia.hugs kisses.you were great.thankyou.ok 12 mid-
talktime.visit time. ------- is in the room nextdoor.spend the
night she asks? ok. say i. up all night talking. showers .yam
drink im so tired,body so stiff,,,but hey..this is love..this is
6/2/88 woke up angry.and hungry .eat grits and shriveled apple
and stale cheese.spend terrible morning thinking too much and
feeling tense and afraid. kris calls at ten to say she cant come
over but would I like to join her in taffic court in marin. ok.
it felt good to get out.we had a nice chat by the lake near the
courthouse.i cried over being lonely and misunderstood.
60 people in line for court to open. the judge is stoic mean and
cruel.this is gonna take hours.he spends twenty minutes explain-
ing guilt,non guilt,contesting,appealing,do this for that,fined
this if that..etc. could'nt follow any of it.one by one he de-
cides our fate.real melting pot of crimes AND WIDE VARIETY OF
wrong way.disco lights in dashboard.speeding.seatbelts,insurance
lack and no licence on boat.no show for court.etc..judge has
great power.the worst fate is traffic school it seem like he
passes that sentence on a whim,and if he thinks you're to naive.
every person who walked outta that room breathed a huge sigh of
lifts me right out of my depression.
great experience. felt sorry for all these terrorized people
encountered purse snatcher tonight. joyce and I were talking in
the street and a guy slammed into her he missed the purse but
tripped over me.
6/16/88 telex to roger
/so..this being a **s*t*a*r is balony.life is hard.to live it
well is hard.to have help when I need it is a challenge.to have
friends,to be honest,not to hide...this all takes WORK!!!!
my life is not rosey.its getting more unrosey all the time .MY
shortcomings are being pushed in my face.my body hurts.My love
life ..its clearer why I dont have one.my lack of financial sav-
vy,my relationships with family ANd friends,my dreams all must
reach to a higher level
                          7/88 PORTLAND
every artist dreams to achieve what I have  achieved.to create a
work that moves people that stirs them up inside ...that rattles
their cage.that makes them scream and yell and laugh and cry.this
ive achieved
july 18th we begin rehearsing for our portland show.everybody has
very high and good spirits.i am very scared.very tense
,sweat,dizzy.we are refining the show a lot.changing lots.polish-
ing details.i tell them im scared.its hard for them to listen to
that. so we move on
 before I was using a peashooter to affect change.with storm,ive
got a shotgun.
theres a feeling that I dont really exist.this new fame is hard
to believe.like if I tell someone what im doing...they'll say
come on.like right now  im being filmed.by n.b.c .  theres a film
crew in my living room.they'll be following me  round berkeley
the next few days. what have I done?
9/10/88 taiko drum festival.dance calligraphy.seeigi kato.banging
on drum and yelling is a good thing to do.one piece called living
in the present. waking the dead.making rain.taiko resembles acro-
batic/dance/prayer/joy drumming.it was good.
culture is a good thing.it reminds us the value in
life.life=magic. they whack those drums with everything they got.
kris says im a fascinating/intriguing person.she wants to know
me.she wants to get inside me. this makes me feel good to be so
fascinating. but I wonder what exactly it is. is it my aloofness
,my aloness,my mysterious nature.? my disability,my speech prob-
lem,my body,my fear,my love? I dont know what it is.i feel like
SPOCK .everybodys always making light of how he is and he just
looks at them and says something 'how he fails to see the humor
in their statement'.he has a look of 'thats the way I am.**
do those big strong men with the buldging muscles make love?
do they make tiny gentle movements ,are they tender,are they
sweet are they shy about this secret dance.
 why do we all wanna be perfect? why is love poetry so etherely
perfect. I will try to remedy this
 i'll keep in touch  i'll keep at it I wont let it get away
[credo of disabled erotica]
it doesnt work like that
it works like this
I talked. I told her I was afraid. I told her I wanted to be
close. I told her I didnt know who to love. if sex was love.i
asked her if she had a boyfriend. I told her I felt ugly. I told
her I was unsure.i told her I avoided her....she asked me for a
hug.we kissed.
                           on a train
im on a train going from oakland to santa barbara. im sitting in
a special handicapped seat in a handicapped car. older folks are
there. I   know you're really curious about me. I eat I go to the
toilet I stare out the window.they eat they go to the bathroom
they stare out the window.they talk a little .traveling.marriag-
es.illnesses.getting old.
an old man passes by me.smiles and asks how im doing? when I say
fine,he says ,'like a rock.' and I say ,'yeah'.
later on in the trip.it takes 9 hours. im standing in the front
of the car,looking around at the people there  and doing my
calesthenic excercizes. the old man starts photographing me and I
start hamming it up.i then tell them all about the play and the
guy says, 'i knew there was something special about you.'
july 19
stood waiting in the wings.was sort of relaxed.chatted with
ta Da.the opening I get up to do the thing unfolding like a
catarpillar it ends,lights go out and I fall off the podium.  I
roll so it doesnt hurt.i rush to get in place to deliver my 2
spoken lines.i cant get them out.the suspense is thrilling.im
panting...but then everything clicks and I feel like im master of
the stage and after 90 minutes its over and theres standing
what remains hard for Neil is making his cues. he knows exactly
where he is supposed to be,when,and with what motivation . his
director made sure that he got all that, which is a directors
job.the project wasnt so much rod teaching Neil how to act be-
cause Neil was a natural; it was getting Neil's  body to go along
with it. the pressure is always there and practice only helps so
much. relaxing is the only thing that really works. but how do
you relax when you cant be sure of anything, even the things most
people take for ganted?? like hitting their marks,or opening
their mouthes??
I knew I had something important in and about me.i didnt know
it was a heaviness a lightness and a depth  a way of seeing . I
looked inside myself and found treasures.i could see the richness
of life.
santa barbara conversation with cynthia wisehart at roger marcus'
house  nov 8
'Life moves forward all the time',Neil said. Im afraid of change
also,but I think I like change more than im afraid of it. I need
it to do better. To love myself.
  If I thought about what could go wrong,i would'nt do it. If I
thought I had nothing to say or it was unimportant,i would'nt be
doing what im doing. most people feel stupid afraid and ugly. If
I focused on my bad feelings ,id never fall in love or speak in
Thats what learning is...daring.
Maybe its ok   to be weak,to stumble trip or fall..i mean,this
play is my life.the event of doing it is in reality what my life
is like. why should'nt they see everything.exhausting,frustrat-
ing,joyful,liberating,desperate  I quit.maybe this is unlike any
theater ever before. Its real.
Theater might be life. I might be theater.


1 picture=1000 words poem=1 idea 1 idea = an image

life work​​​

 .... 20 years ago, I was on a supersonic jet airliner bound for
Rome to meet with the pope. I was gettin hungry midway part
Nevada somewhere approaching Salt Lake. So I went to the refrig-
erator or at least what I thought was the refrigerator to get
myself a peanut butter and jelly sandwich. I opened the door and
boooom... lust as the plane was crossing the sound barrier, I
fell out. and landed in the Green River at Steamboat Rock. Of
course, I've never been the same since and you'll find me return-
ing to that river at just about this time every year.

A disabled wind
Stirs A disabled leaf
Which grows by disabled light
Guided by the disabled neutrino
A key principal
In the power of variety over uniformity
Promising no limits to regeneration of that which matters to the universal design

i would be happier to see more disabled waiters in resteraunts
i would be happier to see more braille on sidewalks
i would be happier to see more opera singers with speech impediments
i would be happier to see more spastic security guards
i would be happier to see more one armed grocery checkers
i would be happier to see more blind toll booth operators
i would be happier to see more firefighters with disabilities
i would be happier to see more dancers with limps
i would be happier to see more fashion models with twitches
i would be happier to see more airline hostesses who are deaf
i would be happier to see more crutch using physical therapist
disabled ACTORS are great people
disabled POETS are great thinkers
disabled WRITERS are wonderful tto know
disabled HOLY/WOMEN are corageous
disabled BELLHOPS have great bodies
disabled LAWYERS belong in the world
disabled DENTISTS are compassionate
disabled METERMAIDS are smart
disabled PRESIDENTS are great lovers
disabled COOKS have a lot to say
disabled FATHERS are fun people
disabled WINETASTERS are loved deeply
disabled SEX SYMBOLS love deeply
disabled FARMERS are playful
disabled INVESTMENT BROKERS lead rich lives
disabled ART STUIDENTS thin,k profound thoughts
disabled COURT JUDGES are capable
disabled TALK SHO HOSTS are well balanced
disabled MILLIONAIRES are sensitive
disabled GARBAGE MEN are deep
disabled FLIGHT ATTENDANTS are joyous
disabled TAXI DRIVERS are freedom fighters
disabled FLORISTS are adventurousd
disabled DOCTORS are great learners
disabled SURGONS are proud allies
disabled FISHERKINGS are daring
disabled FIREFIGHTERS live close to reality
disabled HOUSE SITTERS are inventivly clever
disabled HEALERS are great friends
disabled PLASTERERS are nice to touch
disabled ROCK CLIMBERS are lighthearted
disabled SOUX CHEFS have much to offer
disabled SIOUX CHEIFS are world changers
disabled SWIM SUIT MODELS are sexy and intelligent
disabled ASTRONOUGHTS are experts on loving
disabled HOSPICE WORKERS are movers and shakers
disabled SENIORS are world class leaders
disabled PEOPLE are shining examples of human beings



best tell a book by its cover

windancer film

i started to think about speaking. my speech require much labor/intense physical work my thoughts come easy.my speech is slow tho like a .5 in windows movie maker frames pr second i think i am frugal with words.making them count does?this make me THINK carefully? i think so

windancer film
DEAR DELTA AIRLINES,the movie you showed on your sf flight to
atlanta was incredible.called WINDANCER,it featured a young girl
in a wheelchair.BRAVO for the visibility of persons with disabil-
ity in film.this is rare. the plot revolved around her hate love
relationship to the horse [windancer] on whom she acquired this
injury. and on her fathers relationship to her and her disabili-
ty.and on her therapists relationship to her fathers
overprotectiveness and to her [the daughter] wanting to be cod-
dled [as they say] .im all for that. the only thing is ,I never
saw the young girl be anywhere but in the wheelchair and I never
saw her enjoy any friends.did she have friends? surely this is a
difficult situation.i know because im a quadraplegic myself.so I
do fault the film for making her 'the scapegoat,spoiled brat'yet
not showing any of how hard my life is.and how I should get angry
because the ranchouse does have stairs and everyone feels so bad
around me.and why does this therapist think she knows every-
thing.? the therapist looks kind  of miserable in her own life.what
kind of role model is that.no one hugged or touched with genuine
affection in the movie except the young girl and the horse.no
wonder shes depressed.
she has no disabled people as role models out there in
montana.and probably if there are they are  poor and  in nursing
the role of the grandfather [brian keith] I
thought was cool.he looked on knowingly and didn’t get wigged out
by the wheelchair and...he hung out with the natives [Native american
 people] although I dont think its fair you always have them
be trackers on the trail of something
 WINDANCER,all in all I think is a good learning experience.
I should have had the headphones for the full effect.thankyou for
showing it .and thankyou for providing me with free airfare to
atlanta.with the paralympic spirit truely alive

DEAR ANNIE  Liebowitz C/O SUSAN,   FEB 25TH 1993





                           neil marcus   
it's clear