~ Neil Marcus ~
Banishing Fear & Dread of
People with Disabilities
UC Berkeley campus on Oct. 27, 2002, left
arm extended over the slogan –
“underrepresented now.”
Underrepresented Is a
Metaphor for ‘Not Understood’
“Neil and I were moving off the UC Campus, heading home, when I noticed the inscription in chalk, on the asphalt. Students wrote the statement. The salient part ‘underrepresented now’ I wanted in the foreground with Neil and his chair positioned nearby. Neil decided to lie prone with arm extended and fists clenched. The original content of the message I do not know. Underrepresented is a metaphor for ‘not understood,’ a part of everyday for Neil Marcus.”
— A Spontaneous Event: Gary Ivanek on
His Photo of Neil Marcus on the Asphalt
By Michael Chacko Daniels
Editor & Publisher, New River Free Press International
LEGENDARY Neil Marcus says it’s an urban legend that he goes up to people and handcuffs himself to them.
Or wrestles with them.
An urban legend that grows out of viewing his revolutionary work — Storm Reading.
(Storm Reading is a work in two acts written and performed by Neil Marcus, adapted for the stage by Neil Marcus, Rod Lathim, and Roger Marcus. It has been performed 200 times in the U. S., Canada, and England since1988).
But what of the rumor that Neil does the same things off stage as on it.
Y – e – a – h, folks, it’s an urban legend — far as I know.
And I’ve known Neil since the early 1980s. Neither has he put handcuffs on me nor have I seen him place them on anyone.
That is, you understand, handcuffs made of metal or plastic.
What other kinds are there?
Well, there are his SPECIAL EFFECTS, some of which got distilled into Storm Reading.
More about that after an enlightening Storm Reading meditation on Dystonia — a condition that he and half a million to over a million people in North America have, a meditation that offers a glimpse into Mr. Marcus’s playful personality, the liberating way he views the world and himself, and his role in freeing us from whatever we have handcuffed ourselves to:
“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? Perhaps dystonia is, in a way, a universal condition. Something we can all identify with. We must all become more conscious, more humorous, more insightful, more creative. We must fill our lives with grace and empathy.
“(Neil raises a fist triumphantly and lets out an empowered yell.)” (http://www.newsun.com/StormRead.html)
The above excerpt gives us an opening into Neil’s revolutionary perspective, one that moves him to never act powerless or as the victim, but instead to act out of a sense of love for himself and for others.
And here’s how the medical folks define Dystonia [Dystonia Medical Research Foundation] as they must:
“Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures. Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords.”
GETTING HANDCUFFED I’d been at Berkeley’s Center for Independent Living (CIL) for a couple of years, back in the early 1980s, providing housing and access services to virtually thousands of persons with disabilities a year, when I first met Neil.
One day, he was there suddenly parked beside my desk in the narrow confines of the housing services area, his blue eyes looking at me with infinite interest as if he’d made a great find — perhaps discovered a creature of a rare species, or just a kindred spirit.
“How can I help you?” I wanted to say, but I didn’t quite get started with that line.
Because it looked like he was about to say something.
But he didn’t.
Instead, he rose from his motorized wheelchair on one leg, the other impossibly high up in the air, and like a yogi effortlessly performing a difficult asana, he swiveled, fought with the Berkeley Farm crate fixed to the back of the wheelchair, extracted a folded paper, placed it on my desk.
He smiled, pointed with a finger at the paper.
I must’ve appeared a bit reluctant because up went his eyebrows, chin rose, eyes twinkled; his finger directed me as if it were a wand.
“Go ahead. It won’t hurt. Read!” they all seemed to urge.
I complied.
SPECIAL EFFECTS, the paper said.
Its contents were marvelously eclectic; the visuals surprised me:
Items from different sources, some clipped from newspapers, others typed or written or drawn, had been patched on to a legal-sized sheet and copied.
They refracted the world as it is, was, and could be.
My head turned, neck bent, eyes squinted, mind jogged, thoughts multiplied.
I was impressed.
“Did you do this? Is this your work?” I asked, always profoundly impressed by the work and passion of poet-artist pamphleteers when they cater to no mean intent.
“Y – e – a – h,” he said, slanting his head and grinning.
I was hooked.
In my work during those years at CIL, the world — geniuses all — had a way of flowing in from Telegraph Avenue into the little housing services area that Mark Lee and I ran.
Carpenters, designers, graphic artists, cartoonists, poets, dancers, ramp builders, survivors of institutional and domestic abuse, revolutionaries, holocaust survivors, story tellers . . .
“Lasso him before he gets away,” I told myself.
I urged him to contribute his poetry to my second manual in The Architecture of Independence series for CIL.
“Very encouraging,” reflects Neil, recalling my verbal lassoing in a recent e-mail.
So, in a sense you might say, we had ‘handcuffed’ each other.
And that would very well provide an insight into the reciprocal world of Poet-Playwright-Dancer-Philosopher-Visual Artist Neil Marcus, whose favorite teacher is Harvey Jackins, of Re-evaluation Counseling (or Co-counseling) fame, the essential Neil Marcus of Ojai and Berkeley, both of California, who not only counsels through his art, his performances on stage and off, and his spirit, but who also seeks to be counseled by all his audiences.
Years later, in workshops conducted by Jobs for Homeless Consortium’s Fast-Track Training Academy, Neil Marcus opened the minds and hearts of Bay Area Workforce Development professionals about the worlds of human possibilities — that of their clients with disabilities as well as their own — as he leaped and soared with them, challenging their stereotypes.
I watched, fascinated, each time he banished “fear and dread” of disability.
From the workshop evaluations, I can confidently say, Their world is a more liberated one because of their encounter with Neil Marcus.
High School
Ojai Valley School
College
Fairhaven College
Bellingham, WA
Teacher That Influenced Neil The Most
Harvey Jackins, Co-Counselling
Books That Influenced Neil The Most
Buckminster Fuller's Books
Favorite Philosopher
Cornell West
Favorite Singer
Rickey Lee Jones
Favorite Quotation
The heart is a small thing that desireth great matters
-Francis J Quarrels
Neil's Published Works
"Through my 40+ years of living with a neurological condition which affects all voluntary movement, I have made some remarkable discoveries that I have applied to Theater , Dance, Social Process, Psychology, Writing, Poetics, and Education. I have been able to apply these discoveries in very tangible ways that have remarkably good effects on people and society."
Beautiful Bright Eyes
About Neil - what I can say is that his beautiful
bright eyes and smile seem to hold such passion
for life and whatever he is involved in.
That's the thought I hold of Neil when I think of him.
~ Ann Cupolo ~
Q________________________Q
New River Free Press International
Tell us about yourself.
What makes you who you are?
Q________________________QNM
that the image of fear and doom
associated with disability
needed change.
After all I was disabled,
I was probably going to continue being disabled
and I wanted to enjoy my life and my future.
I guess I just happened to stumble into the arts.
I mean, I saw that images of disability were confining
because they lacked artistry.
Further, when I acted with an artistic purpose,
Q________________________Q
New River Free Press International
What do you think we
should remember as we remake
the world through the work we do?
Q________________________QNM I have been learning to think about my disabled body and how it has been socially constructed to fit inside society.
I am beginning to learn how to critique this construct and how to resist it such that it loses its power. Very hard to do because this construct of disability is widely accepted as ‘Truth’ or ‘that’s the way it is’ and this web of construct is virtually invisible.
As too are scars and all that lies behind them.
I would say that Dance and Disability are very much influenced by the invisible web too.
Can I resist such ingrained beliefs? that of “normal” being the hardest to resist.
I say, I am resisting the urge to be ‘normal,’ but am I?
I say, I can resist, but can I?
From now on, especially in choreographed texts, I wish to strike no pose or make no move that does not claim or express my wholeness and complete power as a person in this body and that also makes the invisible web shrink a bit.
I need all of your thoughts, help, and innovation to do this.
Q________________________Q
New River Free Press International
Has your vision changed
as you have participated
in the remaking of the world?
Q________________________QNM
there must be disabled art.
art which represents disabled people;
the pride of our being,
the character of our culture
and the vision of our future.
Q________________________Q
New River Free Press International
What challenges do you
perceive in achieving your
vision of society?
Q________________________QNM
that moves people, that stirs them up inside . . .
that rattles their cages,
that makes them scream and yell and laugh and cry.
I am learning that in spite of all this seeming pressure,
time is really infinite
and that nothing "big" hangs on moments.
Moments carry endless possibilities.
It's a full house and boy am I up for tonight.
I feel free.
I am using everything I have.
I'm using time, space, and my movement and senses.
How Gary Ivanek Met Neil Marcus
“The soft side of street photography is a rich source of subject matter for me. I live in the San Francisco Bay Area where street musicians, religious fundamentalists, political rabble rousers, and other visually interesting folk express themselves on street corners, in parks, and at staged events. Events such as the Folsom Street Fair, the Haight Street Fair, the Love Parade, and The Castro on Halloween provide interesting and colorful subjects. While photographing a street comic on the UC Berkeley campus, I met Neil Marcus. A portrait session followed, using the black windows of the UC Art Museum as a backdrop. Over the last few years, Neil and I have collaborated to produce hundreds of Neil portraits in various locations.”
Rod Lathim on Neil Marcus
Neil is acknowledged by his peers in the disability
culture world, by scholars, and by the press as a
key figure in the development of disability culture,
awareness, and education. His unique approach
to disability — as an art versus a medical condition
that creates barriers in one’s life — is the center
of his message. As a writer, dancer, actor,
philosopher, and visual artist, his work
has had a profound impact on our country
and specifically on the lives of people living
with disabilities.
Storm Reading, a play based on Neil's life and art
which was taped for television in 1995, was recently
transferred to DVD and is used across the nation
and internationally as an educational tool in countless
secondary school and college settings. The demand
for Storm Reading has never subsided since the
show ended its tour in 1996. The tour of the show
included university campuses, regional theatres,
and such venues as The Kennedy Center, and was
featured on National Public Radio's
"All Things Considered" and
"NBC's Today Show" with Maria Shriver.
—Rod Lathim, Director and Founder, Access Theatre
Availability of Storm Reading
Storm Reading is available on DVD –
free to non-profit and educational organizations,
plus $5 for shipping and handling.
Contact: Rod Lathim,
2428 Chapala Street, Santa Barbara, CA 93105.
Send check for $5 made to Emily Publications.
It is available in Open Caption, Closed Captioned,
and Audio Described formats.
DVD is funded by:
Access Theatre Endowment Fund
at the Santa Barbara Foundation
NEC Foundation of America
Blanche and Irving Laurie Foundation
Mathers Foundation.
Also available through Emily Publications:
Storms And Illuminations:
18 Years Of Access Theatre
by Cynthia Wisehart ($19.95)
Neil Marcus on Accessibility
“Accessibility means
you feel O. K.
about being in a place.”
— neil marcus
From:
Going where you wheel
On Telegraph Ave
Landmarks on Telegraph
dwight way i know
because of the island,
krishna copy,
the old soup kitchen,
a used book store.
haste i know because
of cody’s
la villa,
la fiesta,
and the flower booth.
channing i know because
of cleos,
logos, &
millers.
durant i know because
of b or a,
yarmo
tower posters,
& blondies.
bancroft i know because there is, where is, the university
a lot comes and goes on telegraph ave.
•neil marcus•
A Center for Independent Living Book
Berkeley, 1986
Edited & Designed by
Michael Chacko Daniels
Reprinted with the permission of CIL ©
From:
The inner & outer art & practice of
Making your home accessible
Welcome.
Enter.
Be here.
Hi.
How are you?
Relax.
Take Charge.
You r home.
•neil marcus•
A few musicians have met a few disabled people.
A few famous musicians are disabled.
Not many architects have much contacts
with disabled people. Few builders
and developers have contact with disabled
people. Some restaurantowners have had
contact with disabled people. Maybe some
cooks and chefs know some disabled people.
More food market managers are
meeting disabled people.
Solar hot water consultants haven’t had a great
amount of contact with disabled people. Japanese
corporate heads are talking to more disabled people.
Ministers are meeting a lot of disabled people.
•neil marcus•
In my disabled kitchen
of the future
there will be trampolines
where I can jump and roll
to counters
and appliances
to stir and fry
and to move pots around
•neil marcus•
A Center for Independent Living Book
Berkeley, 1988
Edited & Designed by
Michael Chacko Daniels
Reprinted with the permission of CIL ©
"We do not need pity, nor do we need to be reminded that we are vulnerable. We must be treated as equals, — and communication is the way we can bring this about." — Louis Braille (1841)
About the Editor: San Franciscan Michael Chacko Daniels, formerly a community worker and clown, and now a re-emerging writer and editor, grew up in Bombay. Books: Writers Workshop, Kolkata: Split in Two (1971, 2004), Anything Out of Place Is Dirt (1971, 2004), and That Damn Romantic Fool (1972, 2005). Read all about his Indian and American journey at http://indiawritingstation.com/community-service-calls/. He helped found the Jobs for Homeless Consortium in 1988 and was its executive director from 1995 till its closing in 2004.
This interview can also be read @:
AGREEMENT: NEW RIVER FREE PRESS INTERNATIONAL/US-INDIA WRITING STATION/AND/OR CAREER VISIONS FOR A SMALL PLANET WILL RETAIN THE FOLLOWING RIGHTS: ALL RIGHTS TO PUBLISH THE ENTIRE INTERVIEW, OR PART(S) OF IT, IN ELECTRONIC, AUDIO, VIDEO, AND/OR PRINT VERSIONS; ALL RIGHTS TO RETAIN IT IN ITS PUBLIC AND PRIVATE ARCHIVES INDEFINITELY; AND ALL RIGHTS TO INCLUDE IT IN FUTURE PRINTED COMPENDIUMS AND BOOKS. THE EDITOR RETAINS THE EDITOR'S PREROGATIVE TO EDIT THE INTERVIEW FOR GRAMMAR, STYLE, CONTENT, AND LENGTH. THE INTERVIEWEE FULLY UNDERSTANDS THAT HE/SHE WILL NOT RECEIVE ANY PAYMENT, EITHER NOW, OR IN THE FUTURE, FOR PARTICIPATING IN THIS INTERVIEW. BY SUBMITTING WRITTEN AND/OR ORAL RESPONSES TO THE ABOVE QUESTIONS BY ANY METHOD, INCLUDING, BUT NOT LIMITED TO, ELECTRONIC, TELEPHONIC, MANUAL, AND/OR POSTAL METHODS, THE INTERVIEWEE AGREES TO THE ABOVE CONDITIONS AND STIPULATIONS. AFTER FIRST PUBLICATION BY NEW RIVER FREE PRESS INTERNATIONAL/ US-INDIA WRITING STATION/AND/OR CAREER VISIONS FOR A SMALL PLANET, THE INTERVIEWEE RETAINS THE RIGHT TO USE HER/HIS IDEAS AND WORDS THAT ARE CONTAINED IN HER/HIS RESPONSES IN THE INTERVIEW FOR ANY PURPOSE WITHOUT RESTRICTIONS. THE FORMAT OF THE INTERVIEW AND THE QUESTIONS WILL REMAIN THE PROPERTY OF THE EDITOR AND PUBLISHER.
-END-
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