Helen Keller Tries To Tell You Her Story (Despite Your Helen Keller Jokes)

Star of happiness promotional shot: Godin with lamp on head and braille paper and Igor GuideDog, and three little girls in projected background.On to the black stage she steps. You believe you hear her cane tap tapping, then stop. Papers rustle. Suddenly you are blinded by a brilliant light. The light, emanating from a lamp on her head like that of a miner, creates dark smudges of her facial features. Under the brilliant light and shadow face, you see what appears to be an oversized pamphlet. Its pages glow eerily with the angel-sleeves of her pale robe or jacket. At first you think the pages are blank, then you recognize them as braille-dappled.

She begins reading, “I was not born blind. I was not born deaf. I was not born a joke.”

Something childish sparks in you. “If Helen Keller fell down in the woods, would she make a sound?”

“What?” she asks. She seems disconcerted, not angry, and this titillates you.

“How did Helen Keller burn the side of her face?”

Helen Keller answers, “I answered the iron.”

“How’d she burn the other side?”

“It rang again.”

“Hahaha!” You are having fun. “What’s Helen Keller’s favorite color?”

“Purple,” she says.

“No,” you tell her, “Corduroy! “You laugh. These jokes are hilarious! Isn’t she a sport playing this funny game with you.

It is impossible to say if that is a scowl on her face with the light in your eyes. You decide it’s a smile. She seems to wait to see if you’ve finished and, having temporarily run out of jokes, you let her continue. “I was born in 18 80 in Tuscumbia Alabama on a postbellum plantation called Ivy Green. The fair daughter of a southern belle and a confederate soldier, I had–”

“How did Helen Keller’s parents punish her?”

It’s like the itch of a phantom limb. It must be scratched somehow, but she ignores you. “I had, they tell me, keen eyes. They were blue.”

On a screen behind her, the opening sickbed scene of the 1962 film The Miracle Worker projects silently. Your eyes drift to the moving black and white image, while   Helen continues her story.

“In the winter of 1882 when I was nineteen months old, just learning how to talk, I was struck by a fever. Some say it was meningitis. Others say scarlet fever. It raged through my little body for two weeks and when it broke my family rejoiced.”

Talk of her family reminds you of your unrequited joke, and, you can’t help it, there is a little meanness in your voice when you repeat, “How did Helen Keller’s parents punish her?”

“Then the doctor told them the fever had left me deaf and blind, and they mourned.”

It’s like you’re not even there, like she’s forgotten you, sitting in the bright illumination of your personal, if somewhat erratic, spotlight. You raise your voice. “Come on, how did Helen Keller’s parents punish her?”

“They washed my hands out with soap,” she says, letting out an exasperated sigh, the sigh of a mother fed up with her little trickster.

“Nice,” you say, for this new attitude of hers does not bother you. You’re playing a part too. Besides, there are many punchlines to this joke. You ask again, “How did Helen Keller’s parents punish her?”

This time Helen answers with conviction, “They moved the furniture around.”

“Let’s have another!” you say.

“No,” she says, “they really did move the furniture around.”

“What?” You’re confused.

Helen continues, “Two inlets of perception cut off from the world. Taste touch and smell were all I had to connect with others. So I invented signs, little imitations of the world in which I lived. I mimed the act of buttering bread if that was what I wanted, or crawled on the ground, hands doubled in a fist, to show my little black friend–this was after the emancipation proclamation, that it was time to go hunting for guinea fowl eggs in the grass.

As I wrote in my youthful autobiography, The Story of My Life, In those days, a little colored girl, Martha Washington, the child of our cook, and Belle, an old Setter, and a great hunter in her day, were my constant companions. Martha Washington understood my signs, and I seldom had any difficulty in making her do just as I wished. It pleased me to domineer over her, and she generally submitted to my tyranny rather than risk a hand-to-hand encounter.”

The projection on the wall shifts abruptly to the famous food fight scene of the Miracle Worker–eight minutes of struggle between Helen and Teacher–foot-stomping, hand-slapping, grappling, utensils clattering, inarticulate cries, and non-verbal reprimands.

“I was strong, active, indifferent to consequences. I knew my own mind well enough and     always had my own way, even if I had to fight tooth and nail for it.

“They called me the Tyrant of Ivy Green. I snatched food off the plates of others at table and flew into violent tantrums when corrected or deterred.” She pauses, thoughtful. “They tell me it was suggested I be put in an asylum.”

“What a home for retards? Hey, I got one for yuh …What did Helen Keller name her dog?” You are dying. This is so funny. “Nymphdrumpherlmf! Hahaha!”

Silence greets your hilarity.

“Ok you didn’t like that one.”

She shakes her head emphatically, raking the light across your visionscape.

“You’re gonna love this one… Why can’t Helen Keller drive?”

She has her hand on her hip. She is not amused. You wait until you can’t wait any longer. You explode, “Because she’s a woman! Hahaha!”

You laugh uproariously. She remains looking at you, you think, with those eye pits under the light. You cover your mouth and sigh. What can you do with a person so totally devoid of a sense of humor?

“As a matter of fact,” says Helen, “I was a feminist, a suffragette.”

“A what?” Your jokes have made you dumb. Is she rolling her eyes at you?

I fought for a woman’s right to vote… I was quite the radical. A Socialist and anti-war activist. I was one of the founding members of the NAACP. I was very politically engaged.”

 

“So how’d you end up performing like a freak on vaudeville?”

“Indeed, people criticized me for ‘the deplorable theatrical exhibition into which I had allowed myself to be dragged,’ but we needed the money, and we were one of the highest paid acts on vaudeville.”

“Oh, I get it,” you say,

“you were a sellout.”

“You know,” she says testily, “it’s not easy to make a living as a deaf blind woman, even graduating from Radcliff, summa cum laude. I didn’t want to be a charity case. Andrew Carnegie Offered to give me a pension for the rest of my life… But of course I couldn’t possibly accept his money since he was a capitalist pig who, during our interview, threatened to take me over his knee and spank me for my pinko politics–can you imagine? I was a grown woman! Therefore, it was much more dignified to perform on vaudeville… Besides, being on stage gave me the opportunity to educate people about worker’s rights, and the injustices of our capitalist system.”

“Wow.” You say, allowing in a little snark, “that sounds like a fun show.”

I had jokes too.”

“Hey, did you hear about the Paralympics plane crash?”

“The what?”

“Three disabled guys, a blind man, an amputee and a guy in a wheelchair–”

“Oh no!” she says.

“Oh yes,” you say, and continue with gusto, “are flying back from the Paralympics games in the middle east when their plane crashes in the Sahara desert. They are the only three survivors…”

Helen Keller flips through her notes and then begins reading over you, “As I grew bigger and stronger, my parents began to fear that they might really have to send me to an asylum…”

Two can play this game, you think and raise your voice. “So they wait around for a while for someone to rescue them, but no one shows…”

She gets louder. “But then my mother read Charles dickens’ American Notes, in which he describes his encounter with Laura Bridgman, the first deaf-blind American to be educated.”

“They start to get real thirsty, so they decide to seek out water.”

“Now I’d like to introduce you to Charles, who will read the passage…”

“The amputee leads the way with the blind man pushing the guy in the wheelchair, and eventually they find an oasis.”

“…the passage that inspired my family to contact the Perkins School for the blind…”

“The amputee leader goes in first, cools himself off, drinks a load of water, and walks out the other side, and, it’s a miracle! He has a new leg!”

“…, where Laura had miraculously been taught to read, write and communicate using the manual alphabet.”

“The blind man offers to push the guy in the wheelchair, but he gets refused because the guy in the wheelchair wants to be mister independent and insists the blind man goes ahead first.”

Helen calls, “Dickens!” to someone over your shoulder, perhaps the guy up in the sound booth, but you don’t turn around to look. You want to finish your joke.

You talk faster, “So the blind man goes in, splashes around, drinks a load of water walks out the other side and, whoa, it’s a fucking miracle! He can see!”

“Dickens?” she calls again.

You are frantic to get to your punchline. “Now the guy in the wheelchair is getting really excited , starts pushing with all his might, goes into the water, cools off, drinks, goes out the other side and lo and behold…”

She shouts, “Dickens!” which forces you to scream out, “New tires!”

You laugh uproariously until the authoritative electronic English voice–a voice like Charles Dickens robot ghost–blares from the PA, “Long before I looked upon her, the help had come. her face was radiant with intelligence and pleasure. Her hair, braided by her own hands, was bound about a head, whose intellectual capacity and development were beautifully expressed in its graceful outline, and its broad open brow; her dress, arranged by herself–”

“You mean she dressed herself?” you interrupt, “Very impressive.”

“Be quiet,” she says to you and pulls out a flask from an inner pocket. “Go on Charles,” she says to the voice over your shoulder, and takes a giant swig.

You are stunned . Helen Keller drinks?

“…was a pattern of neatness and simplicity; the work she had knitted lay beside her; her writing-book was on the desk she leaned upon. – From the mournful ruin of such bereavement, there had slowly risen up this gentle, tender, guileless, grateful-hearted being.”

“Ugh,” you say. “dickens at his cheesiest.”

“Shh!” she rebukes.

Charles continues, “Like other inmates of that house, she had a green ribbon bound round her eyelids. A doll she had dressed lay near upon the ground. I took it up, and saw that she had made a green fillet such as she wore, and fastened it about its mimic eyes.”

“Ha!” you say, triumphant, “Even blind people don’t like to look at blind eyes! But what was Dickens doing visiting some deaf-blind chick anyway?”

“Laura was famous,” she tells you, as if you were a child. “Thousands of people visited her at the Perkins School.”

“You mean they put her on display!?”

She seems embarrassed, sensing a trap. “Sort of, but–”

“Like a freak show!”

“No. It wasn’t like that. It was about progress. About the possibilities of education and science. About enlightenment and humanitarianism.” She is regaining momentum.

“Uh huh. Did they charge money?”

“Not exactly,” she says softly, the pool of lamplight falling at her feet.

“But I bet she brought in lots of dough for that blind school.”

“Well yes, and is that so bad?” She perks up. “I mean, that helped the Perkins Institute educate Teacher and send her to me…” She grows fanatical. “to rescue me from an irrevocable descent into complete animalistic degeneracy!”

You’ve got nothing to say to that. She looks pleased. She returns her attention to her book. She shuffles her braille book one way, then the other. The oversized pages have been printed on perforated sheets, which suddenly cascade to the floor. She pulls the accordion back together and tries to find her place. This is painful to watch. You do the peeking out through fingers thing in your commiseration with her discomfort.

Suddenly she flings the pages over her shoulder and wings it. You’d suspected all along that she didn’t need them; it is her story after all.

Anne Sullivan Macy, Teacher, was blind as a child and, though a series of operations restored much of her sight, she always had trouble with her eyes.”

“Ha! The blind teaching the blind!”

She ignores you. She removes her jacket with the angel sleeves. At some point she has removed her miner’s lamp. How had you not noticed this or the fact that she is you suddenly see that she is quite attractive.

“Teacher’s life started out much worse than mine. She was the daughter of Irish immigrants. Her mother died when she was a child and her father was an alcoholic who abused her and her siblings.”

“Hey,” you try lamely, “did you hear the one about the Irish guy who went to a private investigator because he’d lost his temper?”

She does not miss a beat. “When her mother died, Teacher was put into an orphanage, where she learned early to fight. She was uniquely qualified to tame the tyrant of Ivy Green. In fact, some people called her methods unsound.” Her voice has changed registers; now it is sultry, inviting.

“hmm,” you say, “this sounds interesting.”

“yes,” she says with flirty eyes, “I was impossible. Oftentimes Teacher had to resort to physical restraints and other extreme measures to dominate me.”

The food fight scene is back up and you glance at the black and white woman tackling the little girl. Your eyes return to Helen’s pretty face, then slip down to fixate on her boobs–how had you missed those? You are very glad the spotlight is not on you anymore. Reluctantly you look back up and realize with a little jolt that she is looking directly at you, or seems to be–for with the spotlight on her now, she must be quite blind to you sitting out here in the dark–and waiting for you to say something. “Mm,” you say, “go on.”

“Well, it was very hard for Teacher to do her work with my parents scrutinizing her every move.” Helen is fiddling with the black strap that dangles from the handle of her white cane. It is a little bit obscene the way she is fiddling with it. “Finally teacher convinced my parents that, in order to master me, she must remove me from their presence.” She bats her long lashes at you. “We were installed in a little cottage some distance from the main house…”

She trails off, allowing you to follow. It dawns on you where she might be going with this and you smile at her. She seems to see and smiles back.

“And, in order to make me believe I was in a new and unfamiliar environment…Far from my family and completely reliant on Teacher… They…”

You burst in and together gleefully say, “moved the furniture around!”

“Yes!” she says, and theatrically raises her arm to present the final joyful water pump scene where Teacher (Anne Bancroft) drags the impossible Helen (Patty Duke) to the water pump and spells w-a-t-e-r into her hand while the water splashes over them and the light dawns and Helen understands language. All is joyful and triumphant. Bells ring and the movie rushes to the end.

“That’s a lovely story,” you say, a little misty-eyed despite yourself.

She is pleased. She says, “And that’s just the beginning.”

“No,” you say, “That’s the end of the movie.”

“THE END” looms above her in all its Hollywood glory, and you are a satisfied spectator.

Helen Keller, on the other hand is not happy. “But I’m only 7 at the end of the movie. And I live to be 87.”

You feel mean again. You don’t understand what her problem is. “So? You were deaf dumb and blind. You learned how to quote talk–” you make air-quotes with your fingers, “what more do you want?”

She turns as if to leave, then turns back at the wall next to THE END. The spotlight constricts, haloing her.

THE END fades and a book entitled The World I Live In by Helen Keller opens with cinematic magic. There is music now and a page has its passage highlighted while Helen recites. “Every book is in a sense autobiographical. But while other self-recording creatures are permitted at least to seem to change the subject, apparently nobody cares what I think of the tariff, the conservation of our natural resources, or the conflicts which revolve about the name of Dreyfus. If I offer to reform the education system of the world, my editorial friends say, ‘That is interesting, but will you please tell us what idea you had of goodness and beauty when you were six years old?’ The editors are so kind that they are, no doubt, right in thinking that nothing I have to say about the affairs of the universe would be interesting. But until they give me opportunity to write about matters that are not-me, the world must go on uninstructed and unreformed, and I can only do my best with the one small subject upon which I am allowed to discourse.”

Star of Happiness promotional shot: Godin in white, sleeves hanging down. The End looms large in projection.

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Helen & Friends @ Zuccotti Park: Occupy Wall Street 5-year anniversary

“ASK ME WHAT I THINK OF CAPITALISM” That was the sign I made and carried with me to Occupy Wall Street Sunday. We finally made it to Zuccotti Park, after the fact from the standpoint of many who think the movement of the physical place is dead. But it was exhilarating for me and my companions nonetheless.

Besides me and my sign there was:

1 Igor GuideDog (Mr. Popularity)

2 Caroline (blind friend with cane)

3 David (filmmaker with old school Lomo Kino camera that took 30 seconds of footage and 10 minutes to reload

4 Liam (latecomer/hanger on)

 

I’d agonized over the signs – regarding both form and content:

1 How to incorporate Helen’s fun Vaudeville Q & A

2 How to incorporate my show (The Star of Happiness: Helen Keller on Vaudeville?!)

3 How to engage with an unseen public

4 How to engage with other blind people–actually I’m lying this was not a concern. I just wanted to say to people “hey you wanna feel my sign”! this proved to be fun.

5 How to get the words on the poster without busting out the old spray paints and upsetting domestic odor 6 How to make letters legible to sighted people when you can’t see

On the night before our outing, time was dwindling and I’d not made the stencils I had considered. I finally hit upon using Velcro tape to make letters but let me tell you this is not so easy as it sounds especially when you can’t see what you’re doing. At about midnight, after more than one tall boy, I began to despair that I was making a sign illegible to all. I almost stopped right there but then decided that a sign that no one could read also had its charm.

I did poop out after that first sign, but it turned out to be just the right thing and just enough of a burden. Not sure how I thought I’d carry six signs in one hand and Igor in the other even with a ride from Accessalimo on one end of the journey and help from friends on the other.

“ASK ME WHAT I THINK OF CAPITALISM” seems suggestive rather than provocative, but even so the lady at the Dunkin’ Do– –No you didn’t?! –We needed coffee and turned to The Man. Sorry. –nuts was indeed provoked she said to David (who was holding my sign for a moment, “who’s going to pay taxes if nobody has a job?” David answered diplomatically that indeed he does have a job and pointed me out as being the owner and author of the offending sign. I was only vaguely aware of this exchange and could not defend my sign since I was busy fending off passes on my German Shepherd by German tourists!

Basically, we did not even get coffee down our gullets when the games began and they did not stop till we left the park. Between the dog and the sign there was really not a moments rest – Igor gave out many Guide Dog FAQs (jesus I wish he had hands) and I talked about Helen and the sign and occasionally got to answer the question – with a big Star of Happiness smile – “I think it has outgrown its usefulness.”

People wanted pictures of me and my sign, people wanted interviews with me and my sign, people wanted words of wisdom from me (it’s that poet prophet thing, I tell yuh–my people have cornered the market!), and I happily got to say many times over, “you wanna feel my sign?!”

We were there to film some footage for a newsreel promo for The Star of Happiness, and we hopefully got some, but since David was using this little old school wind up camera, which may or may not have taken a single decent frame – we won’t know till the film is developed what we got, if anything. The irony is that I neglected to get him to take even a single pic with my iPhone though I grace the iPhones of many strangers and poor David spent much of his time figuring out how to use their cameras so that they could have their picture taken with us!

Ok, fine, so half the people wanting pictures with us were from some kind of disabled action committee (God I hope our footage turns out!) And most of the other half were just plain lame, but still I felt like some kind of crazy pied piper singing out Helen’s song of socialism!

It was fun talking to people about Helen’s politics because it allowed me to hide behind her strong convictions–at least partly. Admittedly many people asked me if I too were a socialist, and finally, by the twentieth time or so, I formulated an answer that did not get people riled up. I had been saying that I’m not really political, but they gave me shit for this and rightly so I suppose. I live in a society that is to a certain extent civilized, meaning, I think, that we are circumscribed by laws that inhibit and punish our selfish and insatiable parts, and so I cannot help being political. What I meant and finally managed to articulate, is that I’m not that interested in current events. I can’t help but take the long view – studied the classics as an undergrad, got my PhD in early modern lit, and just recently started reading books written in the twentieth century.

That said, I do feel a socialist at heart. I feel kindred with Helen’s politics though I myself am not an activist. I tried to tell someone who asked me about policy that I’m an idea woman not a policy woman, but he wouldn’t except that. Well, too bad because it’s true. I think in terms of historical and psychological trends and cannot wrap my brains around the details of changing today’s policy. Rather I found myself clutching at one large thread that runs through Helen’s critique of capitalism: greed. Greed and a culture, which not only allows for but encourages that greed to get totally out of hand. I’m not exactly talking about specific people here – I don’t believe that there are obvious distinctions between the selfish and the unselfish, the greedy and the not greedy. I think these things exist on a continuum, like most everything else I can think of. The fact is that humans will be greedy, shit I had a dog that could be greedy. We all want all we can have, right? Maybe not all the time–hopefully not all the time, but sometimes, right? Probably we have all felt that insatiability that leads to a loss of control, and an indifferent attitude regarding the suffering our bottomless gullets, pockets, loins, etc. might be creating in the lives of others.

What I hit upon in my interviews and discussions yesterday was the thought that the real change that OWS can have, and I think already has had, is to make greediness just a little more out of fashion, which, to those who are greedy for change, may sound trifling but to me, sounds like the kind of change that lays the groundwork for a paradigm shift!

So I guess my answer to the question “What do you think of capitalism?” is tamer than Helen’s, but of course I am not a card-carrying socialist and I have lived well past the dream of her Soviet Utopia, and so there is some irony in my answering with her “I think it has outgrown its usefulness. Rather I think if asked at this moment what I think of capitalism, I should answer the way I would about my own out of control tendencies, “Maybe a little more structure and restraint are in order?!”

 

[First published on November 11, 2011, when hopes were high and my dear Igor GuideDog was still among the living. To learn more about Igor GuideDog and the guide dog fund I set up in his honor, CLICK HERE]

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Helen Keller’s Vaudeville Q & A

a full-length black & white photograph of Helen Keller standing leaning against a tree. She is in a thick woods; the background is dense with limbs and trunks, and her skirts are partially obscured by growth in the foreground. She is facing right with her cheek pressed against the trunk, her right hand rests against it at chest level; her position gives the appearance that she is listening to the tree. She is in a white, long-sleeved dress and her hair is pulled back into a bun. 1907.

 

What is Miss Keller’s age?

There is no age on the vaudeville stage.

 

Does Miss Keller think of marriage?

Yes. Are you proposing to me?

 

Does talking tire you?

Did you ever hear of a woman who tired of talking?

 

Do you close your eyes when you sleep?

I guess I do, but I never stayed awake to see.

 

What do you think of President Harding?

I have a fellow feeling for him. He seems as blind as I am.

 

Who is your favorite hero in real life?

Eugene V. Debs. He dared to do what other men were afraid to do.

 

What do you think of the Ku Klux Klan?

I like them about as much as I do a hornet’s nest.

 

What do you think of Harvard College’s discrimination against the Jews?

I think when any institution of learning applies any test other than scholarship, it has ceased to be a public service institution. Harvard, in discriminating against the Jew and the Negro on grounds other than intellectual qualifications, has proved unworthy of its traditions and covered itself with shame.

 

Can you enjoy trees?

Yes, they speak to me of the silent works of God.

 

Do you think women should go into politics?

Yes, if they want to.

 

Do you think women should hold office?

Yes, if they can get enough of their fellow citizens to vote for them.

 

Who are the three greatest men of our time?

Lenin, Edison, and Charlie Chaplin.

 

What do you think of Soviet Russia?

Soviet Russia is the first organized attempt of the workers to establish an order of society in which human life and happiness shall be of first importance, and not the conservation of property for a privileged class.

 

Who are your best pals?

Books.

 

What is your definition of a reformer?

One who tries to abolish everything his neighbor enjoys.

 

What is your conception of light?

It is like thought in the mind, a bright, amazing thing.

 

What do you think of capitalism?

I think it has outlived its usefulness.

 

What do you think of the League of Nations?

It looks like a league of bandits to me.

 

What did America gain by the war?

The “American Legion” and a bunch of other troubles.

 

Do you believe with Arthur Conan Doyle that spiritualism is the cure for the world’s troubles?

No. I think the world’s troubles are caused chiefly by wrong economic conditions, and the only cure for them is social reorganization.

 

>>>>

 

quoted from Dorothy Herrmann’s biography Helen Keller: A Life, which assures us that “Helen’s replies were not as spontaneous as they appeared. Some months before, she and Annie had compiled a seventeen-page list of questions that she might possibly be asked, and they had rehearsed the answers.” She tells us:

 

“Other topics included whether America had been true to her ideals (‘I am afraid to answer that; the Ku Klux Klan might give me a ducking’), her opinion of ex-president Wilson (‘I think he is the greatest individual disappointment the world has ever known’), her idea of unhappiness (‘Having nothing to do’), and could she really perceive colors (‘Sometimes I feel blue and sometimes I see red’).”

 

>>>

 

For Helen’s thoughts on performing on vaudeville (1920-24) see The Play World.

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Disability Pride Parades Matter

Disability Pride Parades celebrate difference, explode stigma and combat shame!

 

If you did not know that Disability Pride Month came to a close yesterday, you would be forgiven as, in NYC at least, it is only a year old. Mayor de Blasio declared July to be Disability Pride Month last year in honor of the 25th anniversary of the passing of the ADA. In a 2015 article by the NY Daily News, de Blasio was quoted as saying, “The Americans with Disabilities Act is one of the most important civil rights laws in history.”

And yet, although many improvements have been made in education, job opportunities and accessibility, disability seems not to be part of a larger celebration of diversity.

Literary and disability critic Lennard J. Davis puts it like this in his entry “Diversity” in the 2015 book Keywords in Disability Studies:

 

“Disability would seem naturally to fall under the rubric of diversity. Yet much of the time, when one sees lists of those included under the diversity banner, disability is either left off or comes along as the caboose on the diversity train. One could explain this negligence by saying that disability is just not that well known as an identity category; and that, when it is, disability will then take its rightful place along with more familiar identity markers such as race, gender, nationality, ethnicity, sexual orientation, and citizenship. One could say it will just take time and more activism and eventually people will be educated. Or one could say the problem is structural.”

 

Davis’ article explicitly takes up the latter thread, arguing that activism might not be enough to allow for disability to be fully embraced in the celebration of diversity.

A major reason for this is the perception that disability is something that, if possible, ought to be cured immediately, and avoided in future generations. Obviously this latter calls to mind some very unsavory issues of eugenics, but the point is that, for most people, celebrating diversity means celebrating a healthy body and mind, whose functions fall within the “normal” range–most people would not wish disability on anyone they loved.

Here again is Davis:

“The idea presented by diversity is that any identity is one we all could imagine having, and all identities are worthy of choosing. But the one identity one cannot (and, given the ethos of diversity, should not) choose is to be disabled.”

If diversity is a kind of empowerment, then disability would seem to represent its opposite. The very word “disability” suggests the powerlessness of limited possibilities for manipulating one’s world. As Davis puts it, “disability seems to be the poster student for disempowerment.”

Before leaving Davis, I’d like to say a little something about him. I first encountered his writings as a grad student studying 18th-century English literature, as that was his original field of interest also. From his work on the early English novel, he came to think about representations of disability in literature and began theorizing a field of study that he helped to create. The first Disability Studies program was founded at Syracuse University in 1994, and since then, many more have blossomed in the US, Canada, and beyond.

In 1996 Davis edited the first edition of The Disability Studies Reader, now in its 4th edition. That book, along with his Enforcing Normalcy: Disability, Deafness and the Body were my first encounters with an academic discipline that connected to my own work in fundamental ways.

Since my late undergrad days, I’d had the idea of studying blindness as both a metaphorical construct and a social phenomenon. Back then there seemed to be few people in the humanities working on disability as anything more than a literary trope., so I was pretty excited when I discovered Davis.

In the years since, I have left a traditional academic path and merely let that training inform and complicate my artistic/writerly work, and have only thought tangentially of my work as being related to the discipline of Disability Studies. Likewise, in the past ten or twenty years, the scope and, dare I say, diversity, of Disability Studies has blossomed. It is this blossoming as well as its difficulties that has in large degree reformed my work, though not my core artistic impulses.

I did not identify with a disabled community until recently–I barely even thought of myself as part of a blind community. A simple explanation for this is that I grew up as a visually impaired person who lived in a sighted world and, for many years, shame was a determining aspect of my sense of self. I launched out of being a visually impaired person (with no visual markers) into looking like a blind person when I was paired up with my first guide dog, Millennium. Even though I was visually impaired and probably could have done fine with a blind person cane, I refused that stigma, thinking people would treat me too differently. As it turned out, the world still treated me like a disabled person for the first time in my life and it made me very angry.

The “somewhat slutty, almost always drunken, angry blind chick shtick” was mine when I first started performing and of the three aspects of that crazy time, I would say the anger and its debilitating effects was most true. My poem, A Pain Named Dog is really about those long years when shame and anger ruled my life. It took many years and a lot of discipline to wrangle the pain into something worthwhile and not destructive.

The first time I embraced the blind cane was in my Yes we have no bananas dance sequence in The Star of Happiness, my one-woman show about Helen Keller’s time performing on vaudeville. Since then I’ve come to love my blind cane (Moses!) precisely because it is so unsexy and symbolic of helplessness, as I wrote about in Exploding Stigma.

I would certainly not wish my long and strange path into blindness on anyone, but I can’t say it’s not been a good learning experience! Likewise, I can’t say I prefer the pain of a long-degenerating eye disease to an imagined life without it, but I will say with Nietzsche, “I doubt that such pain makes us ‘better’ – but I know that it makes us deeper.”

This is all to say that although I am among those people who hope there will someday be a point when there will be no such thing as blindness, disability, degeneration of mind or body, for now, why not celebrate the chimerical nature of human bodies and minds?

That’s why I wanted to write about the Disability Pride Parade movement.

According to A Brief History of Disability Pride parades, the first Disability Pride Parade took place in Boston back in 1990, but they did not continue their pioneering work. Chicago jumped on the Disability Pride Parade bandwagon in 2004 and it is still going strong. Its 13th just took place on July 23rd, 2016. Other cities and towns which hosted (or will host) a Disability Pride Parade in 2016 include Philadelphia, PA (June 11), Trenton, NJ (October 7), and Nacogdoches, TX (April 16).

NYC celebrated its first Disability Pride Parade in 2015, and its 2nd took place this year on July 10. It was started by jazz musician Mike LeDonne, whose daughter was born in 2004 with multiple disabilities. On the DisabilityPrideNYC.org website LeDonne describes his inspiration thus:

“Even though she faces different challenges because of her disabilities she is the most beautiful creature on God’s green earth. It’s through my love for her that I started to want the rest of the world to see what I see and know what I know. One day a few years back, right after NYC celebrated Gay Pride Day, I asked myself why there isn’t a Disability Pride Day? Little did I know at the time that Disability Pride was already a national movement and an international one as well. I found that Chicago and other places already had a parade but not New York City? That just seemed wrong so I started making calls and taking it one step at a time learning as I went…. I’m hoping for a big party that not only celebrates people with disabilities but includes all people. A day to reject able-ism and worn-out stereotypes and replace them with a feeling of pride in who and what people with disabilities really are – just another diverse and beautiful aspect of humanity.”

This year it held the event in tandem with Sicily’s Disability Pride Parade, which perhaps suggests a future where the event will be celebrated internationally, lending it a universal solidity.

There can be no doubt that the Disability Pride parade movement is gathering momentum, but it seems to be in fits and starts. According to the Wikipedia page only 13 cities in the US have ever had a Disability Pride Parade, and sadly, many of these took place only one or two years (especially on the 20th anniversary of ADA in 2010) and then fizzled.

Perhaps the reason for this gets back to the structural difficulties of having Diversity embrace Disability. It sure would be nice if at least each state had a Disability Pride parade and even better if every town and city celebrated with a Disability Pride parade on the same day each year, like the 4th of July!

As the author of What’s Next? What’s the Point? Writes, the popularity of Disability Pride Parades is not a goal in itself, but a necessary step in a larger quest for acceptance on the one hand and self-worth on the other:

“Yes, popularity is important. We are happy to have the abled attend; we want them to attend and even participate. But the reason we want that is for them to hear the messages in those parades about acceptance and inclusion, because these attitudes and actions give birth to civil rights. Popularity serves our political purpose, thus we parade.

Beyond the parade that serves our political purposes with the abled audience lays a disabled audience that serves our social devotions. Ultimately, we parade for other disabled people, for they are our true audience. If disabled people who feel bad about themselves because society has taught them to feel that way see disabled people proudly parading down main street, then maybe they can learn to be proud of themselves as disabled people, and maybe even parade themselves someday.”

Cheers to that!

I knew no disability pride when I was growing into being a disabled person. These days, accessibility and disability seem to be almost hot topics, but not quite. Although There is a growing interest in people with disabilities–from memoires of people with disabilities writing their own life perspective to people with disabilities representing themselves in the media–there is still a long way to go. Marching in a parade with cool outfits, floats and different bodies and minds, is just one more way to enable one’s human power and joy.

 

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Helen Keller on Vaudeville Provides Fodder for a Lifetime of Art!

Yes! Helen Keller really did perform on vaudeville stages for four years (1920-1924). I stumbled across this odd fact while finishing up my PhD (in 18th Century English literature) and tucked it away for further investigation. That investigation–into Helen’s motivations and the reaction of others to her short-lived but startling career move–became The Star of Happiness: Helen Keller on Vaudeville?!

Much of the script of the Star of Happiness quotes Helen’s eloquent words about her uniquely glamorous life as a performer, her unenviable frustrations at not being taken seriously as a politically engaged and often radical thinker, and her poignant thoughts about living life as “an unmated.” Furthermore, as I’m wont to do, I complicated Helen’s words with my own perspective. As a blind writer, performer and doctor of philosophy I melded irreverent humor with reverential admiration in a patchwork of biography, jokes, philosophy, and the sound and vision scapes that call attention to the joys and superficialities of sensory experience.

Five years later and I’m still wrestling with Keller’s words, ideas and identity…

I’m happy to report that I’ll be presenting a portion of my strangely fictionalized adaptation of The Star of Happiness in the fall at Queens Council on the Arts with Boundless Tales‘ own five year anniversary celebration.

So here’s to more Star of Happiness weirdness, where Historical fact and schoolyard humor collide in my autobiographical treatment of Helen Keller’s time on vaudeville. It may no longer be a one-woman, two-voice, three-act theatrical production, but it will still grope towards an understanding of the blind spectacle.

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Apostrophe, an anti-suicide suicide song for accordion

To sleep perchance to dream

I hope.

Can I will myself to survive

I wish.

Last wish.

Last dying wish to live.

 

I took the anti-step

Just now

Nothing to live for so long

You see.

And nothing to die for either

I fear.

On this long

Long long

Way down.

 

When I hit the bottom

My body will break

If a miracle happens

And I’m mended some day

Do I have to believe?

Will I lose my edge?

 

I’m not like those others

Who went before ME

No sentimentality here

You see

With my back to my city

I’ve got nothing

To wave to

On this long

Long long

Way down.

 

My heart yearns for those worries

Of that world I left behind

My lungs fill with regret

On this journey

So long

So long

So long.

 

And, here’s a live performance at Sidewalk Café with my scrappy Avant accordion brain smash!:

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