I received the following writing in an email around the end of September 2019 from Linda Mary Montano and with her permission am reproducing it here in the hope that it might have some further reach. It powerfully continues her ART AND LIFE project into age and disability. I find it a crucial reading and once again, a powerful teaching from Linda.
WIKIPEDIA SAYS, DISABILITY:
According to many definitions, a disability is an impairment that may be cognitive, developmental, intellectual, mental, physical, sensory, or some combination of these. Other definitions describe disability as the societal disadvantage arising from such impairments. Disability substantially affects a person's life activities and may be present from birth or occur during a person's lifetime.
Recently I was working on editing a video with artist/video producer and editor Tobe Carey at his studio in Glenford NY and was beyond amazed/appalled/surprised/shocked to see images of myself taken during a performance in Albany NY 2019. Given I have had Cervical Dystonia aka Torticollis since 2005, I never have seen these extreme kinds of moving images , that is videos of myself in action or in this case in spasm and tremors. Admittedly I had made a video titled Dystonia, https://youtu.be/lj9OlegCsBc when I first felt torques and twisting of my body and neck but these video images I saw in 2019, some 10 years later, were a shock, a NEW wake up call! Was I really that disabled? Since my art=my life and I have made a commitment and vow to make art about my personal life, I felt instantly drawn to a deeper action and so this confessional essay is not the beginning but a continuation of my commitment to address my personal life in my art. So here we go; Dystonia Round Two: 10 Years Later.
The Dystonia video was made when I was a newcomer to the neurological twisting game that turned me eventually into a BOBBLEHEAD whenever I was stressed or dehydrated or excited or emotionally torqued into unexploded feelings. And Super Bobblehead is the way it has progressed according to the images seen on the recent video 2019.
WIKIPEDIA SAYS: BOBBLEHEAD
"A bobblehead, also known as a nodder, wobbler or bobble head, is a type of collectible doll. Its head is often oversized compared to its body. Instead of a solid connection, its head is connected to the body by a spring or hook in such a way that a light tap will cause the head to bobble, hence the name."
Disabled I really am now but the opportunities to address my "condition" publicly are actually fundable ($$$$$$$$), that is I can make money to make my disabled art!!! Why is this? Social media has made likeable, made visible, made lookable, made public, made defensible millions of our quirks, idiosyncrasies, peculiarities, oddities, eccentricities, foibles, whimseys, vagaries, kinks, mannerisms, wounds, singularities and characteristics that were once hidden in closets and behind closed doors. The internet has made it cool to be DIFFERENTLY ABELED.
And these are a few places to shop for support so folks like me can get moolah to make art and still be "different."
ACCESSIBILITY-NEA
LEEWAY GRANT
COMPASSION PROJECT SEED GRANT
PHILAN TOPIC PND
POCKETSENSE; LESTER PETRILLO FUND
AMERICANS FOR THE ARTS
GRANTWATCH
AWESOME FOUNDATION
WIKIPEDIA SAYS; FRANKLIN FURNACE:
Franklin Furnace Archive, Inc. is an arts organization based in Fort Greene, Brooklyn, New York that serves to preserve and encourage the production of avant-garde art, particularly forms such as performance art that are under-represented by arts institutions due to their ephemeral nature or politically unpopular content.
Founded by Martha Wilsonin 1976 as an archive for artist books and variable media, Franklin Furnace gathered the largest collection of artist books in the United States before 1993 when most of the collection, or 13,500 books, was acquired by the Museum of Modern Art.[2][3]I t was first created at a storefront in Tribeca in Manhattan. It was established as an "alternate" space for artists to "find an audience outside of the mercantile, aesthetic, and tempermental hassles of the gallery-museum circuit."
Franklin Furnace in Brooklyn has ALWAYS been 10 years ahead of the curve as far as it's fabulous foundress Martha Wilson right from the beginning, included performance that was/is literally "beyond" nomenclature, "beyond" inclusion in the gallery game. She not only showed/shows the impossible but has archived books about it and funds it!!! So it was not surprising to recently (2019) find on Facebook the notice for an event at Franklin Furnace devoted to the title near and dear to me and my condition: DISABILITY.
It reads:
"The exhibition, titled [Label This] highlights five different artists who have created work which challenges audiences to evaluate their own preconceived notions of how ability, in its infinite configurations, can shape the ways in which we exist in the world.
The exhibition, contained in two museum cases, features documentation of work by artists Lisa Bufano, Gary Corbin, Dustin Grella, Frank Moore*, and Linda Sibio from their performances at Franklin Furnace and beyond, and is conceived as a complement to the Disability Rights Timeline which was installed this Spring by Pratt’s Learning/Access center."
WIKIPEDIA SAYS: FRANK MOORE*
"Moore was born with cerebral palsy, could not walk or talk, and communicated using a laser-pointer and a board of letters, numbers, and commonly used words. Using his pointer, he wrote books, directed plays, directed, acted in and edited films, and regularly gave poetry readings. Moore played piano, sang in ensemble music jams, and led bands in hard core punk clubs all along the West Coast of the United States until his death. He also produced, and exhibited across the United States and Canada, a large collection of original oil and digital paintings.
Moore was known for his long (5–48 hours) ritualistic performances with audience participation, nudity, and eroticism.His writings on performance,[ art, life, and cultural subversion, and his performance/video archive on Vimeo.com seen by over 32 million people, further influence Moore's legacy.
Moore coined the word "eroplay" to describe physical play between adults released from the linear goals of sex and orgasm. He explored this and similar concepts in performance and ritual as a way for people to connect on a deeper level beyond the social and cultural expectations and limitations."
So as you see Disability is now and was hot, funded, included in the money making runways of the art world, the pages of Facebook, high end jet-set magazines and TV shows. So why am I shocked, abashed and so embarrassed by my own public contortions during performances having collaborated once with Frank Moore and not judging his disability? Without a partner/manager/fluffer/hairdresser/close relative to tell me: "Linda you really shake when you are performing," I would not have known that I have WORK TO DO. It is the work that will take X amount of therapy, prayer and detachment from the thought that I am perfectly fabulous when I appear publicly either on or off stage. It is the work of knowing/feeling/getting it that I am an elder and that I shake/contort/twist/turn and I have a medical reason for doing that. It is called Dystonia.
But the argument heats up when I think of and express love for Katherine Hepburn and say it is totally not triggering that she has Dysphonia and her voice fluctuations are fine with me, acceptable, her trademark later in life and certainly no reason to boo HER OFF THE STAGE. Yet as a newbie in accepting my own Disability, I boo myself off my stage.
WIKIPEDIA SAYS; KATHERINE HEPBURN:
he actress Katharine Hepburn (1907–2003) had an essential tremor, which she inherited from her grandfather, that caused her head—and sometimes her hands—to shake. According to Dickens (1990), the tremor was noticeable by the time of her performance in the 1979 film The Corn is Green, when critics mentioned the "palsy that kept her head trembling". Hepburn's tremor worsened in the 1980s, when she was in her 70s to 80s
Not only Katherine but Stephen Hawking's crippled body was never an oye vey for me! And yet I oye vey my twisted body and oye vey me doubly because i'm supposed to be so aesthetically/spiritually advanced that Nothing should bother my wonderful, detached-self. WRONG! I admit, i'm bothered and not detached yet I have rehearsed aging but I guess I never really, fully, gently received permission to let my face fall into Wrinkle World. That is,even though I'm 77 and a beginner at OLD AGE, this face betrayal has not laid the ground work for my other, this time neurological slip into fragility.
PRAYER TO KATHERINE HEPBURN:
Dear Katherine, in the name of God how did you do it? How did you get onstage and keep talking with that shaky voice? Tremored body? Were you a wreck, embarrassed? Did Humphrey still kiss you even though when you said " I love you Humph," it came out shaky and you spasmed all over? Did he or your manager tell you to quit making films because your voice was the voice of a sick person? Just asking. Let me know in your good time. Basically I'm impressed that you played the show must go on card . Show me how to do that even though the world is a complete catastrophe and i should be an art activist and not a nacissistic performance artist!!!
FOR EXAMPLE, SOME WORLD ISSUES:
URBAN POVERTY
FOOD INSECURITY
DEFORESTATION
INTERNET, FOOD, DRUG ADDICTION
PROTECTION OF INTERNATIONALLY DISPLACED
GIVING REFUGEES RIGHT TO WORK
CLIMATE CHANGE DISPLACEMENT
CHRONIC UNDER FUNDING
GOVERNMENT TAMPERING WITH TICKS
GLYSPHOSATED FOOD
INFANTS CAGED AT BORDERS
RACISM AND UNLEASHED ANGER
DESTRUCTION OF ENVIRONMENT/FAMILY VALUES/RESPECT
FAILED EDUCATION SYSTEM
GUNS
CORRUPTION
SUICIDE
BULLYING
LOBBYING
SEXISM/AGEISM
MEDICAL INSURANCE DISCREPENCIES
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OH NO It's all too much!!!!!!!!!! Now I have a headache. Help, I need a friend!!!
WIKIPEDIA SAYS; FRIENDSHIP:
"Although there are many forms of friendship, some of which may vary from place to place, certain characteristics are present in many types of such bonds. Such characteristics include affection; kindness, love, virtue, sympathy, empathy,honesty, altruism, loyalty, generosity, forgiveness, mutual understanding and compassion, enjoyment of each other's company, trust, and the ability to be oneself, express one's feelings to others, and make mistakes without fear of judgment from the friend. Friendship is an essential aspect of relationship building skills."
Just because my video image showed me all distorted and I saw myself for the first time because of that video, I decided to ask my friends what they thought about my public performances that included me shaking via Dystonia. This is what a few said:
MONTANO'S QUESTIONS: TO LYNDA CARRE
HOW DO U FEEL SEEING SOMEONE PHYSICALLY CHALLENGED PERFORMING?
I notice that I’m noticing. I make a decision to either include or to look through the physical disability so I can focus on the performance intended. I am aware that I become very inspired by the grit and bravery of individuals who perform while challenged with a disability.
HOW DID U "FEEL" SEEING ME TWISTING AND IN OBVIOUS TREMORS IN THE PERFORMANCE IN ALBANY?
I emphathetically feel somewhat how I imagine that the physical effects are in my own body. I feel some anxiety about the body tremoring and owning my will. The twisting and tremors make me curious about how exhausting it must be to be in constant motion, to not be at resting stillness. When I see you using the larger motion of walking about, that action seems to control and manage the tyranny of the smaller involuntary tremor movements. At some point I don’t notice at all.
WOULD YOU BE "ONSTAGE " IF U HAD A DISABILITY
I would need to feel an overwhelming compulsion, a drive, a mandate that I had something really significant that HAD to be shared or performed and that I was guided by Spirit to do so.
HOW DOES THE "AUDIENCE" FEEL WATCHING SOMEONE WITH A DISABILITY?
In general I imagine any “audience” is comprised by individuals with many different experiences, beliefs, and biases they project, and empathetic sensations they feel, when watching someone perform with a disability. Therefore, the intent, confidence, presence, and talent of the performer is extremely important to counter “freakishness”, “pity”, “disgust”, or some other projections or judgments from an audience. On the other hand an audience may award a performer working with disabilities too much critical “slack”, or kudos, BECAUSE of the disability, even when the quality of the performance simply doesn’t warrant it.
ASK YOUR OWN QUESTION
I expect that a seasoned performer challenged by physical disabilities would be “at home” with their issues so they may not be constrained much at all. It may not even be a conscious “thing” when it is lived with 24/7.
How is it for you: Is it manageable? Does it trigger anxiety? Do you feel like you actually conquer the disabilities by performing in spite of the challenges? Does it take additional motivation to move through, or integrate, the disabilities to perform what is being called for? Do you judge and compare yourself to a self before disabilities? Do you feel compelled to perform while you can, in case the physical disabilities worsen? Do you have acceptance and compassion for yourself? Do you ever consider how it could be so much worse? Do you experience gratitude that you are able to perform even with the physical disabilities? Do you ever consider that the physical disabilities add layers of texture, character, and personality to your artistic performing voice?
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QUESTIONS TO ADAM SILVER
HOW DO U FEEL SEEING SOMEONE PHYSICALLY CHALLENGED PERFORMING?
I am in admiration of their courage and inner strength
HOW DID U "FEEL" SEEING ME TWISTING AND IN OBVIOUS TREMORS IN THE PERFORMANCE IN ALBANY?
Shakes make me think of sacred spirals spiraling motion, kundalini energy, earth energy . I love seeing the dance of the body.
WOULD YOU BE "ONSTAGE " IF U HAD A DISABILITY
I hope so
HOW DOES THE "AUDIENCE" FEEL WATCHING SOMEONE WITH A DISABILITY?
Depends on the audience, the individuals, and their own ability to be in touch with themselves. They must feel love energy towards others and themselves.
ASK YOUR OWN QUESTION
I give you a challenge : feel the tremors as sacred earth energy and the spiraling of healing motion.
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Dr. LAURIE MONTANO ALDERSON
Many people develop a benign head tremor with age. Look at Katherine Hepburn in On Golden Pond. It doesn’t necessarily mean you have a disability or neurological problem. Many are familial. You could try a medication to see if it makes it stop if you were interested. It doesn’t bother me to see it, and as a doctor it just makes my mind wonder if it is due to age or if it’s from a different diagnosis. Keep doing what you love and ask your neurologist about meds if you’re interested
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QUESTIONS TO LAURA KOPCZAK
HOW DO U FEEL SEEING SOMEONE PHYSICALLY CHALLENGED PERFORMING?
At first I reject the person because I think it it is ugly. But after a couple of minutes I settle down and find the way the person is moving interesting. But it is still sometimes distracting. It depends on whether I settle down enough.
HOW DID U "FEEL" SEEING ME TWISTING AND IN OBVIOUS TREMORS IN THE PERFORMANCE IN ALBANY?
Lately I think of adults as children. We tolerate differences in children. After a while you were just a different shaped kid that moves differently. But I think watching tremors triggers my own nervous system. I get a headache.
WOULD YOU BE "ONSTAGE " IF U HAD A DISABILITY
I could be onstage if I stuttered. But if I developed a disability I would probably be embaressed and not go onstage.
HOW DOES THE "AUDIENCE" FEEL WATCHING SOMEONE WITH A DISABILITY?
I imagine they have to settle down. Or it could have this voyeuristic thing to it for some people - watching someone who we believe is suffering. Or sometimes there is even a special theatrical performance like a play in which all the performers have disabilities. I haven't seen one, but my sister has.
ASK YOUR OWN QUESTION
Were you in pain while you were performing?
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PAUL McMAHON
Go for it! Your courage is what i see.
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JOSEPHA GUTELIUS
The only disability I honor and feel badly seeing is shame, shyness, wishing to be invisible, self-hatred, self-criticism. Everyone has some disability to some degree. The ones who are bold and unashamed and willing to be Out There performing are very exciting to behold! Yes, no holding back for them! The more tics and tremors the better. They are us, unmasked. They are the outermost of our innards. I don't want to see Linda Mary Montano gagged, trying to go straight. I love seeing her in any physical state she is in, in the moment. As the saying goes, our weaknesses are our greatest strengths.
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LYNN HERRING
I think it is courageous and real to perform exactly as you are. It gives others with disabilities the strength to do the same... to come out and be who they are. When you do it with humor, you are allowing people to laugh and be vulnerable with you and to help them open their hearts wide to themselves and to others.
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CONCLUSION:
I end with a quote I found on Wikipedia: Essential Tremor.
"Director-writer-producer-comedian Adam McKay was diagnosed with essential tremor. He’s insistent on doing press for his work telling himself, “if I get shaky, I get shaky, who the f*ck cares."
Linda Mary Montano, Saugerties NY 2019
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VIDEO: LINDA PERFORMS WITH DYSTONIA, below