AG Healey and National Federation of the Blind Announce Agreement to Make Health Care Kiosks Accessible to Blind Consumers

FOR IMMEDIATE RELEASE                                                   

July 26, 2016

MEDIA CONTACT:
Emalie Gainey (AGO)
(617) 727-2543

Chris Danielsen (NFB)
(410) 262-1281

AG Healey and National Federation of the Blind Announce Agreement to Announce Agreement to Make Health Care Kiosks Accessible to Blind Consumers

Announcement Marks 26th Anniversary of Americans with Disabilities Act

BOSTON – On the 26th anniversary of the passage of the Americans with Disabilities Act (ADA), Attorney General Maura Healey and the National Federation of the Blind (NFB) announced a first-of-its-kind agreement with Pursuant Health, Inc. to make its self-service health care kiosks accessible to blind consumers.

The agreement reached with Pursuant Health, an Atlanta-based company that manufactures and operates thousands of self-service health care kiosks in retail stores nationwide, provides meaningful benefits to individuals nationwide who are blind or who have low vision, including 27,000 Massachusetts residents who are legally blind.

“Technology should be used to improve people’s lives, not create barriers,” said AG Healey. “We must take steps to ensure that all Massachusetts residents have equal access to health care services, and that technology is accessible to consumers with disabilities. We are pleased to have worked with the NFB and Pursuant Health to make these kiosks accessible.”

Pursuant Health’s kiosks offer important biometric health screenings, including vision assessments, blood pressure screening, weight and BMI assessments, and pain management advice. Health risks and recommendations for further testing or treatment are displayed on the kiosk or sent to the consumer via email. Until now, however, blind consumers have not been able to use the kiosks effectively.

“Living the lives we want as blind people includes monitoring our own health so that we can take steps to maintain or improve it,” said Mark A. Riccobono, President of the NFB. “Health information has the potential to be more accessible than ever to the blind with twenty-first-century technology, but only if the manufacturers of technology keep accessibility in mind. We are delighted to have reached this agreement with Pursuant Health, working with the outstanding civil rights advocates in Attorney General Healey’s office, and believe that it will result in health information kiosks that set an industry-leading example.”

According to the terms of the agreement, Pursuant Health will implement a detailed project plan to make their kiosks and website accessible to consumers who are blind or visually impaired. The kiosks will be made accessible over time and will be reformatted to provide audio instructions and easily locatable “hot spots” on the kiosk screens to help blind consumers navigate the system. Pursuant Health will also offer membership options to make it easier for blind consumers to activate the kiosks and track their individual health assessments.

Finally, Pursuant Health will make payments totaling $95,000 to the AG’s Office and the NFB, which will be used to further improve access and opportunity for individuals with disabilities.

“Massachusetts Commission for the Blind applauds the efforts of Attorney General Healey for negotiating a settlement that takes one more important step closer to providing equal access to technology and health care,” said MCB Commissioner Paul Saner.

The agreement is the most recent result of collaboration between the AG’s Office and the NFB. Past collaborations have included making Monster.com’s websiteApple’s iTunes services and Cardtronics ATMs fully and equally accessible to blind consumers.

State and federal laws not only prohibit disparate treatment of individuals with disabilities in employment and housing, but also require that all businesses operating places of public accommodation provide people with disabilities with full and equal enjoyment of their goods, services, and facilities.

Continuing her efforts to protect the civil rights of all Massachusetts residents, AG Healey formed a Disability Rights Advisory Committee in July 2015. The Committee is comprised of advocates and experts who meet on a regular basis to consult with and advise AG Healey and her staff on matters pertaining to inclusion, access, and equality for individuals with disabilities. Please click here for more information on AG Healey’s disability rights work since taking office.

This matter was handled by Assistant Attorney General Genevieve C. Nadeau, Chief of AG Healey’s Civil Rights Division on behalf of the Commonwealth, and by Daniel F. Goldstein of the Baltimore firm Brown, Goldstein & Levy, LLP on behalf of the NFB.

###About the National Federation of the Blind

The National Federation of the Blind knows that blindness is not the characteristic that defines you or your future. Every day we raise the expectations of blind people, because low expectations create obstacles between blind people and our dreams. You can live the life you want; blindness is not what holds you back.

National Federation of the Blind

200 East Wells Street
at Jernigan Place
BaltimoreMD 21230
United States

(410) 659-9314 

from “Letters to a Young Cripple” #5

Dear ________,

The most despairing moments in literature stay with me and frequently become plastic, malleable, and serviceable. To put it another way: if you can’t know everything, you better know this—a boy named Raskolnikov saw a dying horse beaten in the street, and the barbarism is imprinted so deeply one understands cruelty is contagious and the sight of it often destroys a burgeoning life. Easy to say it, but impossible to forget after reading Dostoyevsky:

Near the entrance of the tavern stood a cart, but a strange cart. It was one of those big carts usually drawn by heavy cart-horses and laden with casks of wine or other heavy goods. He always liked looking at those great cart-horses, with their long manes, thick legs, and slow even pace, drawing along a perfect mountain with no appearance of effort, as though it were easier going with a load than without it. But now, strange to say, in the shafts of such a cart he saw a thin little sorrel beast, one of those peasants’ nags which he had often seen straining their utmost under a heavy load of wood or hay, especially when the wheels were stuck in the mud or in a rut. And the peasants would beat them so cruelly, sometimes even about the nose and eyes, and he felt so sorry, so sorry for them that he almost cried, and his mother always used to take him away from the window. All of a sudden there was a great uproar of shouting, singing and the balalaïka, and from the tavern a number of big and very drunken peasants came out wearing red and blue shirts and coats thrown over their shoulders.

“Get in, get in!” shouted one of them, a young thick-necked peasant with a fleshy face red as a carrot. “I’ll take you all, get in!”

But at once there was an outbreak of laughter and exclamations in the crowd.

“Take us all with a beast like that!”

“Why, Mikolka, are you crazy to put a nag like that in such a cart?”

“And this mare is twenty if she is a day, mates!”

“Get in, I’ll take you all,” Mikolka shouted again, leaping first into the cart, seizing the reins and standing straight up in front. “The bay has gone with Matvey,” he shouted from the cart—”and this brute, mates, is just breaking my heart, I feel as if I could kill her. She’s just eating her head off. Get in, I tell you! I’ll make her gallop! She’ll gallop!” and he picked up the whip, preparing himself with relish to flog the little mare.

“Get in! Come along!” The crowd laughed. “D’you hear, she’ll gallop!”

“Gallop indeed! She has not had a gallop in her for the last ten years!”

“She’ll jog along!”

“Don’t you mind her, mates, bring a whip each of you, get ready!”

“All right! Give it to her!”

“They all clambered into Mikolka’s cart, laughing and making jokes. Six men got in and there was still room for more. They hauled in a fat, rosy-cheeked woman. She was dressed in red cotton, in a pointed, beaded headdress and thick leather shoes; she was cracking nuts and laughing. The crowd round them was laughing too and indeed, how could they help laughing? That wretched nag was to drag all the cartload of them at a gallop! Two young fellows in the cart were just getting whips ready to help Mikolka. With the cry of “now,” the mare tugged with all her might, but far from galloping, could scarcely move forward; she struggled with her legs, gasping and shrinking from the blows of the three whips which were showered upon her like hail. The laughter in the cart and in the crowd was redoubled, but Mikolka flew into a rage and furiously thrashed the mare, as though he supposed she really could gallop.

“Let me get in, too, mates,” shouted a young man in the crowd whose appetite was aroused.

“Get in, all get in,” cried Mikolka, “she will draw you all. I’ll beat her to death!” And he thrashed and thrashed at the mare, beside himself with fury.

“Father, father,” he cried, “father, what are they doing? Father, they are beating the poor horse!”

“Come along, come along!” said his father. “They are drunken and foolish, they are in fun; come away, don’t look!” and he tried to draw him away, but he tore himself away from his hand, and, beside himself with horror, ran to the horse. The poor beast was in a bad way. She was gasping, standing still, then tugging again and almost falling.

“Beat her to death,” cried Mikolka, “it’s come to that. I’ll do for her!”

“What are you about, are you a Christian, you devil?” shouted an old man in the crowd.

“Did anyone ever see the like? A wretched nag like that pulling such a cartload,” said another.

“You’ll kill her,” shouted the third.

“Don’t meddle! It’s my property, I’ll do what I choose. Get in, more of you! Get in, all of you! I will have her go at a gallop!…”

All at once laughter broke into a roar and covered everything: the mare, roused by the shower of blows, began feebly kicking. Even the old man could not help smiling. To think of a wretched little beast like that trying to kick!

“Two lads in the crowd snatched up whips and ran to the mare to beat her about the ribs. One ran each side.

“Hit her in the face, in the eyes, in the eyes,” cried Mikolka.

“Give us a song, mates,” shouted someone in the cart and everyone in the cart joined in a riotous song, jingling a tambourine and whistling. The woman went on cracking nuts and laughing.

… He ran beside the mare, ran in front of her, saw her being whipped across the eyes, right in the eyes! He was crying, he felt choking, his tears were streaming. One of the men gave him a cut with the whip across the face, he did not feel it. Wringing his hands and screaming, he rushed up to the grey-headed old man with the grey beard, who was shaking his head in disapproval. One woman seized him by the hand and would have taken him away, but he tore himself from her and ran back to the mare. She was almost at the last gasp, but began kicking once more.

“I’ll teach you to kick,” Mikolka shouted ferociously. He threw down the whip, bent forward and picked up from the bottom of the cart a long, thick shaft, he took hold of one end with both hands and with an effort brandished it over the mare.

“He’ll crush her,” was shouted round him. “He’ll kill her!”

“It’s my property,” shouted Mikolka and brought the shaft down with a swinging blow. There was a sound of a heavy thud.

“Thrash her, thrash her! Why have you stopped?” shouted voices in the crowd.

And Mikolka swung the shaft a second time and it fell a second time on the spine of the luckless mare. She sank back on her haunches, but lurched forward and tugged forward with all her force, tugged first on one side and then on the other, trying to move the cart. But the six whips were attacking her in all directions, and the shaft was raised again and fell upon her a third time, then a fourth, with heavy measured blows. Mikolka was in a fury that he could not kill her at one blow.

“She’s a tough one,” was shouted in the crowd.

“She’ll fall in a minute, mates, there will soon be an end of her,” said an admiring spectator in the crowd. 

“Fetch an axe to her! Finish her off,” shouted a third.

“I’ll show you! Stand off,” Mikolka screamed frantically; he threw down the shaft, stooped down in the cart and picked up an iron crowbar. “Look out,” he shouted, and with all his might he dealt a stunning blow at the poor mare. The blow fell; the mare staggered, sank back, tried to pull, but the bar fell again with a swinging blow on her back and she fell on the ground like a log.

“Finish her off,” shouted Mikolka and he leapt beside himself, out of the cart. Several young men, also flushed with drink, seized anything they could come across—whips, sticks, poles, and ran to the dying mare. Mikolka stood on one side and began dealing random blows with the crowbar. The mare stretched out her head, drew a long breath and died.

“You butchered her,” someone shouted in the crowd.

“Why wouldn’t she gallop then?”

“My property!” shouted Mikolka, with bloodshot eyes, brandishing the bar in his hands. He stood as though regretting that he had nothing more to beat.

**

Let me pair alongside Dostoevsky this marvelous quote from Carson McCullers:

But the hearts of small children are delicate organs. A cruel beginning in this world can twist them into curious shapes. The heart of a hurt child can shrink so that forever afterward it is hard and pitted as the seed of a peach. Or again, the heart of such a child may fester and swell until it is a misery to carry within the body, easily chafed and hurt by the most ordinary things.

In his Basis of Morality Arthur Schopenhauer wrote: The assumption that animals are without rights and the illusion that our treatment of them has no moral significance is a positively outrageous example of Western crudity and barbarity. Universal compassion is the only guarantee of morality. Ultimately Crime and Punishment will become a meditation on compassion but not before the moral failure of men, women, and life in public and private are measured by deliriums and sophistries of cruelty as yet unsurpassed in literature.

If you want to know a human being you must first examine his or her relationship to cruelty. Portraits of brutality in novels are in no small measure opportunities for tragic irony—He stood as though regretting that he had nothing more to beat. 

Now a friend of mine, who is paralyzed, who rides a wheelchair, has on more than one occasion crawled down the subway stairs in New York City—no mass transit system in the United States has less accessibility than the Big Apple’s subway system, for though there are a handful of station elevators in the city, they’re almost always out of order, or worse, they stink of urine and feces. Want to go to a job interview? Try spending hours looking for a way into the subway without getting shit on your wheels or shoes. Just try.

He crawled down the filthy steps, dragging his paralyzed legs. Commuters stopped and stared. Passengers were shocked. A cripple was actually working his way, hand over hand, rolling and gyrating down the stairs with a stranger behind him, carrying a wheelchair.

Many cripples have done this.

Cruelty happens by design, though it’s aided by superstition, or as Tom Paine said, it’s driven by the Bible. (“It is from the Bible that man has learned cruelty, rapine, and murder; for the belief of a cruel God makes a cruel man.”)

What do I mean when I say it happens by design?

The adoption of physical barriers is always a matter of indifference. Indifference is what I like to call the 80% rule of cruelty. Susan Sontag: “10 percent of any population is cruel, no matter what, and 10 percent is merciful, no matter what, and the remaining 80 percent can be moved in either direction.”

Erect a cruel building and you promote cruelty.

**

So one thinks of universal design as compassion.

How elastic compassion is!

Arrayed against compassion are the architectures of wantonness. Raskolnikov’s room.

Behind closed eyes one sees that room.

Confession: having lived in some bitterness, I fear the cruelties of human indifference more than anything in this world.

from “Letters to a Young Cripple” #4

Dear _______,

“Who the Hell am I?” you ask, as in “who appointed you to speak on behalf of anyone?” This is the best of all possible questions. I seized the talking stick long ago and you should feel free to grab it back any time you like. But don’t design to take it—plans are insulted destinies and one elemental aspect of cripple-talk comes from the marriage of impulse and necessity. Before you use your tongue, know whether it’s time to voice a requisite inclination.

It’s time for us to get close. For now let’s imagine we’re on opposite sides of a tiny island. It’s a Robinson Crusoe situation. I’ll be Friday and you can be Crusoe. Most would choose to be Crusoe I imagine—he has all the goods and boy does he ever have designs.

Older cripples, those who’ve lived some years before the Americans with Disabilities Act know something about emptiness. We grew up without Crusoe’s nails, drift wood, string, pulleys, guns, and whatever else he hauled away from his foundering ship. Cripple Island is, perhaps, not much of a place but Crusoe has accommodations, and moreover, like any son of industry he knows what to do with them. He builds little England.

Old Crips live in old haunts. In his new and exceptional memoir Hurricane Street Ron Kovic writes of life in the paralysis wards of the early 1970’s. Think “no civil rights” and without rights, think life without dignity—or better—the organization and assembly of life without dignity. Think horror:

Dr. M., the chief surgeon at the hospital’s Spinal Cord Injury (SCI) Center, walks past me. He is very tired but still he recognizes me and says hello. He has been in the operating room all day. His first patient, a paraplegic from D ward, had to have a flap put on his rear end for a bedsore that wouldn’t heal. There are a lot of them in here with that problem and sometimes the flap doesn’t take and they have to do it all over again. It can be very frustrating. Dr. M.’s second patient was not as lucky and had to have his gangrenous left foot removed. The nurses did all they could to save the foot but in the end they just weren’t able to. There are a lot of paralyzed guys around here with amputated legs. You can get a really bad burn and not even know it. I remember hearing a story once about a guy who came home drunk one night with his girlfriend and she filled the bathtub and placed him in it, not realizing the water was scalding hot. He got burned really badly and died the following week. There are a lot of stories like that and you try to never forget them. These are important lessons, and as horrible as it may seem, remembering them is crucial to our survival.

For nearly three months last year I was a patient here at the Long Beach VA hospital, healing a terrible bedsore on my rear end after a fall in the bathtub at my apartment. The accident happened not long after I had broken up with a woman named Carol who I first met at an antiwar demonstration in Los Angeles in the spring of 1972. Carol was the first woman I loved and the very first woman to break my heart. After we broke up I felt as if my whole world had fallen apart.

I was depressed and hardly getting any sleep at night. I remember putting a bandage over the bruise but it just kept getting worse. After a while the bruise became a sore and the sore an open wound, until finally I had to turn myself in to the hospital.

The last place I wanted to be was back in the Long Beach VA hospital. I hated the place. The conditions were atrocious, as bad if not worse than the Bronx VA in New York where I had been after I first came home from the war. The wards were overcrowded and terribly understaffed. The aides would sit in their little room at the end of the hall drinking coffee and cackling away as men on the wards cried out for help that never came. All the windows were tightly shut. The air was rancid, and I would push my call button again and again but no one would come to help.

The anger and frustration would build up inside me and I remember several times screaming into my pillow as I lay on my gurney until I was exhausted. I felt so helpless, so lost. During the entire time, in that depressing place, Carol never called or came down to visit me once. I felt abandoned, betrayed, and soon stopped shaving and began to let my hair grow long. I remember looking in the mirror one morning thinking how much I resembled Jesus Christ hanging from the cross. I thought back again to the Bronx VA when I had been stuck in that chest cast for nearly six months after breaking my femur, and how as I had lain on a gurney on my stomach I would paint pictures of the crucifixion with myself as Christ, and how they’d sent the psychiatrist down from the psych ward because they were concerned and I immediately stopped painting, afraid they would have me committed just like my Uncle Paul who had been beaten to death in a mental hospital years before.

For old crips there was always that need, a desperation to figure out how to live “for yourself.” Life was a terrifying mathematics—an algebra—part hope, part reaction, part belief. We’ll get somewhere with this chalk. Then they came and took the chalk away. “Chalk just makes you more hopeful,” they’d say. Accordingly old crips had to say, a la Beckett: “I can’t go on, I’ll go on.”

Maybe the better Beckett quote is: “Try again. Fail again. Fail better.”

Either way none of the Old Crips had prerogatives. If you expressed yourself in the wrong way the next stop was the mental hospital, make no mistake. One of the great backstories in American poetry is the fact that Allen Ginsberg’s iconic poem “Howl” represents his bold refusal to be quiet about the effects of forced institutionalization. (Ginsberg had been sent to a psychiatric hospital because of his queerness and his passionate intensity.) Yes, none of the Old Crips had “privilege”—unless screaming into your pillow can be understood as a private Theater of Cruelty.

Old Crips had to incorporate and gestate psychological, corporeal, and existential densities, literally hour after hour. In one of my college notebooks (written just three years after my own stint in a psychiatric ward) I copied these lines from Simone de Beauvoir:

Regardless of the staggering dimensions of the world about us, the density of our ignorance, the risks of catastrophes to come, and our individual weakness within the immense collectivity, the fact remains that we are absolutely free today if we choose to will our existence in its finiteness, a finiteness which is open on the infinite. And in fact, any man who has known real loves, real revolts, real desires, and real will knows quite well that he has no need of any outside guarantee to be sure of his goals; their certitude comes from his own drive.

 

This is the essential problem, often expressed to me by Old Crips: young cripples believe in an outside guarantee—for what after all is a civil rights law but a warranty, a certitude, a “writ” that should alleviate us from want? That is exactly what the ADA should be. That is precisely what it ain’t.

As disability rights activist Bob Kafka notes: “If we believed that ADA is the power and we are the recipients of its strength, rather than we are the power and ADA is a tool for us to use, I fear we may still have a long way to go.”

The ADA isn’t a warranty and worse, Old Crips will tell you, the power doesn’t reside there, just as it doesn’t reside in a hammer. The strength is in your mind. Easy enough to say, but harder to enact, especially if you believe there’s an ADA Geek Squad that will ameliorate the obstacles.

We like the ADA. But it hasn’t changed things as much as we’d predicted. If in fact we’ve a long way to go, read more tough people. Kovic’s new book is a good place to start.

 

 

 

 

Notebooks…1980

Don’t moan!

Just pull your hair

as I do—waltzing

in my head

with death

& a glowing point

straight before me…

**

Who appointed you? Nah. Forget Spinoza. I mean “who” besides your mother told you your thoughts are worth a damn?

“Well, when I was a boy the postman said I was smart.”

**

My face is a flag of surrender. I’ve cultivated it. My torso fights on…

**

Happiness crawls in and out of me like that childhood song about the worms and the corpse…

**

How beautiful to see we are still funny. Five friends and no one is selling anything. Though one of us who has lost a lot of weight lifts up his shirt and I say if he keeps this kind of display up, a piano will fall on him. The dog walks into the room with her dish clutched in her teeth. A five point buck looks in the window. Any moment now, Dr. Doolittle will drop by for coffee. We are just laughing animals. Save the human textbook for tomorrow.

**

Carl Jung thought the plants were talking to us. I’m with him.

**

I want you to understand me. I come from one or two regions beyond the blurry pasture. The dark pines are engraved with the bold eyes of my sleep. Here I am, new to this day. What should I do?

from “Letters to a Young Cripple” #3

Dear _________,

You may feel they hate you, and I believe many of them do; “they” the apparatchiks, bureaucrats, customizers, shampooers; artists; school teachers; airline personnel; politicians; Human Resources minions; architects; do-gooders; priests; academics; tour guides; short order cooks; taxicab drivers; salespeople of all kinds; mechanics; happenstance strangers, some of them damaged, who call out: “Why do they let you people in here?”

You must feel they abhor you, that they’d wrap you in old newspaper and throw you out with yesterday’s fish if they thought they could get away with it. Insult to injury: they often “do” get away with it, tasering autistics, denying access to medical help, defying civil rights laws as a prima facie position—“let the cripple sue us—it will take him years—and in the meantime we can put up (insert structure or software system here) without the thin extra dime accessibility would have cost us. Ableism is knee-jerk and wholly consistent.

So yes, they hate you, but not for the reasons you’d suppose—or for the reasons they’d imagine (I promise not to digress) but we’re symbol making animals and we tend to believe the glibbest fancies, for what else is required for flourishing bigotry but a glittering pocket watch made of vivid untruths?

They dislike you because your presence, your very being, the sight of you, the dynamic realities you represent—all this—makes them think. And by God they hate thinking. They hate it even more than they hate children (though they certainly do) and more than they hate the manifold nuances of history (they do) and even more than they hate women (though they most certainly do.)

You are polyphony when all they wanted was cheap guitar. Forgive me Wallace Stevens. The man with the cheap guitar wants to conjure a place, a godforsaken place in his head, and fill it with godforsaken people—the poor, the dazed, the idiots, the blind, the lame, toothless women, stuttering children, war veterans, people fit for dark and empty imaginings, for the man with the cheap guitar has a cheap imagination.

As I say, you’re polyphony. One thinks of Anton Webern’s quote about music: “The idea is distributed in space. It isn’t only in one part; one part can’t express the idea any longer, only the union of parts can completely express the idea. The idea found it necessary to be presented by several parts. After that, there was a rapid flowering of polyphony.”

 

I know of no better definition of nuerodiversity than that. No better description of disablement as it meets the body politic.

It’s not your inconvenience; your extra lap robe; your breathing tube; your service animal that bothers them—it’s that the old ways of doing things cannot express or reflect human complexity. Humanity must be understood, nay, the individual must be recognized as an idea in several parts. Normalcy can’t be easily played any longer. The cheap guitar is outmoded. You stand for a rapid flowering.

 

Old Notebook

You never walk into the same street

& fears are never quite the same—

& like dark animals they’re present

whether you wanted them or not

but white rubber boots are Apollonian

& you see the sun is as strong as always….

**

Pete Seeger…

**

Here come the leather skinned lizards.

Everything they write is between the lines…

**

The dog in me wants reassurances about the sun and stars. Let’s call him Proclus, the dog who models circles, mimic of the universe as he lies down.

He has come home from the woods; his fur smells of horse weed, a Scandinavian mid-  summer scent, part hay, part flowers. That the dog in me has been roaming is clear. Less obvious is his uncertainty, for his instinct is to worship the body’s capacity for survival, but his cultural memory won’t have it–one of the things most people do not understand about him. Dogs do understand death. Meanwhile, the poor boy is epicurean. He knows how to savor found fruit. He does not temporize.

**

Funny, all the vain pastries behind glass in the Strindberg Cafe.

Meanwhile the Heavens turn in silence…

From a Journal

 

Was it you who sat up writing in the summer night?

Was it you who feared poetry won’t solve a thing?

Yes. Despair lay on the water.

Yes. Ghost widows carried books

& vanished

Behind the apple trees…

**

Memory: a girl, her dress yellow as a buttercup…

Behind her, the green chill of the Baltic…

**

Politics in my time is much the same as in Voltaire’s day:

Off with his head; let him keep his head

But live exiled; rail against him;

Read his books in secret.

**

Catherine the Great did not die under a horse.

It’s not even a good story.

**

Livelier dreams do not always await the dreamer.

A principle problem.

**

Then there are the oldies:

The shirt in my dream was from my childhood. It had dreadful stripes. I wore it in the hospital, blind child, alone in a ward. The damned thing came back last night. You can count on the Id.

from “Letters to a Young Cripple” #2

“All societies are rational and irrational at the same time. They are perforce rational in their mechanisms, their cogs and wheels, their connecting systems, and even by the place they assign to the irrational. Yet all this presuposes codes or axioms which are not the products of chance, but which are not intrinsically rational either.”

(Deleuze, Gilles. “Capitalism: A Very Special Delirium” in Chaosophy. Ed.. Autonomedia/Semiotexte. Ed. Sylvere Lothringer. 1995.)

 

This is how it is with disability—the connecting systems of culture (which are concerned with the assignment of meaning) imagine physical difference can be assigned a rational position or location. The asylum and the disability resource center at You Name It University are alike because they separate physical difference from the body normal. For college faculty (many of whom have no authentic civil rights position beyond saying the word “diversity”) disability is a cut off category, because that’s what they’ve believed since elementary school. In this way they are perfectly rational. Power relations have taught them compulsory able-bodied-ness. But the problem for the advocate, the activist, the person with a disability (who presumes entrance to the academy or associated academic venues—conferences, lectures, etc.) is that his or her presence is assigned the status of irrationality.

 

If you say you want accommodations—computer aided real time captioning; sign language interpreters, braille, accessible websites, ADA compliant restrooms—just to name the basics—you are assigned the status of irrationality. This dual status—rational segregation and the irrational claim for civil rights makes disability citizenship almost impossible to attain.

 

Its a ragged self that survives. Its one that refuses to stop insisting on full inclusion and not mingy half granted and grudging accommodations. I’ve been saying things like this on this blog for 7 years but now I’m going a step further: I’m not excusing casual hand gestures from academics or conference organizers—the old “well we just forgot” moue of false sympathy—“So sorry friend. Yes, once again we don’t have accessible stuff. We’re good people. You should like us anyway.” I can no longer afford to forgive the easy assignment of physical difference to categories of complication or inconvenience.

In this way I feel like James Baldwin. I’m not playing along anymore. I’ll call my culture what it is. As Baldwin said: “The paradox of education is precisely this – that as one begins to become conscious one begins to examine the society in which he is being educated.”

 

Ah Baldwin. I need you today. He said: “The price one pays for pursuing any profession, or calling, is an intimate knowledge of its ugly side.” I belong to a generation of writers and academics who came of age before the Americans with Disabilities Act. As a high school student, a college student, a graduate student I endured horrific commentaries from teachers and professors. The dominant trope in American education is speed. Every syllabus is a race. The blind guy with glasses thick as padlocks needed more time to read. He wasn’t supposed to be there. In graduate school at the U of Iowa a famous literature professor named Sherman Paul said I shouldn’t be in his class if I had trouble with my eyes. Against this kind of power-leverage the disabled should demonstrate an all forgiving, all understanding, good nature.

 

Baldwin again: “No people come into possession of a culture without having paid a heavy price for it.” But you see, my generation of “cripples” has paid a heavy price. I’ve paid many times over. This is why I’m not going to forgive inaccessible conferences, university events, programs, and the like. Its not 1978 anymore.

 

Baldwin: “The world is before you and you need not take it or leave it as it was when you came in.”

 

Well I know what the world was like when I came in. I ain’t leavin’ it the same.

 

Here’s the deal. You get called “uppity” as Baldwin well knew. If you’re a cripple you’re a “malcontent” or you have a bad attitude.

 

And one more Baldwin quote: “Pessimists are the people who have no hope for themselves or for others. Pessimists are also people who think the human race is beneath their notice, that they’re better than other human beings.”

 

I think this is the problem with the overt or casual disregard for disability rights—both are ableism and both rely on pessimism.  Perhaps the better word is abjection. In her groundbreaking book “The Power of Horror” Julia Kristeva famously said of abjection:

“There looms, within abjection, one of those violent, dark re- volts of being, directed against a threat that seems to emanate from an exorbitant outside or inside, ejected beyond the scope of the possible, the tolerable, the thinkable. It lies there, quite close, but it cannot be assimilated. It beseeches, worries, and fascinates desire, which, nevertheless, does not let itself be seduced. Apprehensive, desire turns aside; sickened, it rejects. A certainty protects it from the shameful—a certainty of which it is proud holds on to it. But simultaneously, just the same, that impetus, that spasm, that leap is drawn toward an elsewhere as tempting as it is condemned. Unflaggingly, like an inescapable boomerang, a vortex of summons and repulsion places the one haunted by it literally beside himself.”

 

Abjection is Wallace Stevens’ “the nothing that is not there and the nothing that is” and it lies there, quite close, and cannot be assimilated. As cripples we cannot be assimilated, though our estrangements are conditioned to point us always toward an imaginary elsewhere which can only exist in repulsion–we exist because we cannot exist. One thinks of abjection as the tenor of horror if not its gestalt.

What’s a be-horrored cripple to do? Keep getting into their buildings. Be suspicious of medicalized elsewheres, fake summonses, and external and internal repulsions.

Easy? Right?

from “Letters to a Young Cripple”

from Letters to a Young Cripple (a work in progress):

Dear ________,

So forgive me for starting with a grayness but as I recently joked with a paralyzed friend, “I feel like a battered old fish with many dents in his flesh”—the context—that it’s not probable I’ll see the advances I’d hoped for us when the Americans with Disabilities Act was enacted over a quarter century ago. I’m old enough to be feeling what academics call accidie, a weariness, and if I’m not defeated I’m suspicious. Shorthand: we haven’t gotten far enough, and daily the news is incontestable. The “fish conceit” is what can happen to believers and how not to become the fish is the story (mine and yours) since disability bias surrounds us. (Bias is a story with many chapters like Bocaccio and knowing it never renders comfort, though if you’re a bigot you may enjoy schadenfreude. I once had an “iffy” friend who practiced “vengeance fantasy”—as he said, doing it nearly as much as he masturbated, seeing his enemies staked out in the Colosseum with lions chewing at their entrails, etc. He’d rub his hands and imitate Charles Laughton: “how do you like your God now, Christian?”)

Bias is a variorum edition. My spotty pal really meant what he said—if he’d had his way he’d have fried you in oil. Everyone has his own grayness. Discrimination, personified, wants us to join the Centurions, at least inside, and its first sign is indifference. In my experience street theater is one way to resist it. Thirty years ago when I was a Fulbright Scholar in Helsinki, Finland I went one night to a gritty, working class bar where I was accosted by a wildly drunken laborer. Everyone was painfully drunk–that manly near death atavistic Viking berserk hallucination of everything, and I thought: “all these years, so many wounds, so few praises.” That was when a man I did not know turned to me and said: “You are a Jew!” “You’re right,” I said, since I was young and in love with poetry, “I am a Jew!” It was the first time I’d ever felt the pins of anti-Semitism, I, a Lutheran with a long beard. He reached for me then but missed and grabbed another man. “You are a Jew!” he shouted. “No, it is I,” I said, “I am the Jew!” But it was too late. They were on the floor and cursing, two men who had forgotten the oldest notion of them all: in Jewish history there are no coincidences.

 

As Kurt Vonnegut would say, “bias is a clunker” and though it must be taken seriously, if you’re one of its chapter headings having a shield of irony becomes essential. You’re a cripple. You don’t belong in here. Don’t belong on this website, on this campus, don’t belong in a customary place of business. For years I used to carry custom made stickers depicting the universal disability access symbol inside a red circle with a line through it. I’d paste them on the doors of inaccessible restaurants and academic buildings and the like. I really need to get more of them but I can’t remember where I they came from, and as I say, I’m in danger of weariness. Dear young Cripples, I’ve been fighting a long time. Thank God for ADAPT. And don’t stop fighting. But don’t stop laughing either. As the great disability writer and activist Neil Marcus says: “Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’…Disability is an art. it’s an ingenious way to live.”

 

Once while I was teaching at The Ohio State University I was invited to a meeting with a dozen faculty and former astronaut and Senator John Glenn. We discussed the future of digital teaching. Afterwards I boarded a Columbus City bus only to face a woman who loudly asked if she “could pray for me”. She assumed blindness was a sad matter—or worse—a sign I needed spiritual rescue. My guide dog shook his collar. Suddenly I felt wickedly improvisational. I stood up, grabbed the overhead pedestrian bar, and announced loudly so every passenger could hear: “Certainly Madame you may pray for me, but only if I can pray for you, and in turn pray for all the sad souls on this bus—souls buttressed on all sides by tragedies and losses, by DNA and misadventures in capitalism, for we’re all sorrowing Madame, we’re all chaff blown by the cruel winds of post-modernism. Let us pray, now, together; let’s all hold hands!” She fled the bus at the next stop. Strangers applauded. Improvisation allows us to force the speed of associational changes, transforming the customs of disability life. Disability Studies scholar Petra Kuppers writes: If the relations between embodiment and meaning become unstable, the unknown can emerge not as site of negativity but as the launch pad for new explorations. By exciting curiosities, by destabilizing the visual as conventionalized primary access to knowledge, and by creating desires for new constellations of body practice, these disability performances can attempt to move beyond the known into the realm of bodies as generators of positive difference. 

The polarizations, magnetic fields of crippledness are generators. It is not true that rebellion simply makes us old. We’re old when we give up.

And yet…the fights before us are promising to be both rewarding and very hard.

Dear young Cripple: I have the happenstance blues. They’re both accidental (aleatoric) and whatever is the opposite of accident, which, depending on your point of view might have something to do with the means of production, racial determinism from same, or all the other annotated bigotries of the culture club.  As a disabled writer I know a good deal about the culture club. Now back to my happenstance blues…

I’m right here. I’m terribly inconvenient. Blind man at conference. Blind man in the lingerie shop. All built environments are structured and designed strategically to keep my kind out. My kind includes those people who direct their wheelchairs with breathing tubes, amble with crutches, speak with signs, type to speak, roll oxygen tanks, ask for large print menus or descriptive assistance. I’m here standing against the built geographical concentrations of capital development. I’m here. I’m the penny no one wants anymore. My placement is insufficiently circulatory in the public spaces of capital. Which came first, the blues or the architectural determinism that keeps me always an inconvenience?

Capital creates landscapes and determines how the gates will function. Of course there was a time before capital accumulation. It’s no coincidence the disabled were useful before capitalism. The blind were vessels of memory. The blind recited books. Disability is a strategic decision. Every disabled person either knows this or comes a cropper against the gates when they least expect it.

What interests me is how my happenstance-disability-blues are exacerbated by neoliberal capital accumulation. For accumulation one must thing of withholding money from the public good or dispossession, which is of course how neoliberal capital works.  Here is geographer David Harvey in an interview, talking about just this:

Accumulation by dispossession is about dispossessing somebody of their assets or their rights. Traditionally there have been rights which have common property, and one of the ways in which you take these away is by privatizing them. We’ve seen moves in recent years to privatize water. Traditionally, everybody had had access to water, and [when] it gets privatized, you have to pay for it. We’ve seen the privatization of a lot of education by the defunding of the public sector, and so more and more people have to turn to the private sector. We’ve seen the same thing in health care.

What we’re talking about here is the taking away of universal rights, and the privatization of them, so it [becomes] your particular responsibility, rather than the responsibility of the state. One of the proposals which we now have is the privatization of Social Security. Social Security may not be that generous, but it’s universal and everybody has part of it. What we are now saying is, “That shouldn’t be; it should be privatized,” which, of course, means that people will then have to invest in their own pension funds, which means more money goes to Wall Street. So this is what I call privatization by dispossession in our particular circumstance.

    

At the neoliberal university and all its concomitant conferences, workshops, and “terms abroad” (just to name some features of higher ed where my own disability has been problematized) the provision of what we call “reasonable accommodations” under the Americans with Disabilities Act is often considered to be in opposition to accumulation. For instance: I was asked to teach a term abroad in Istanbul. When I pointed out that Istanbul isn’t a guide dog friendly city and that I’d have trouble with the traffic and requested a sighted guide accompany me there, I was told this was too expensive. Think about it! One additional human being to keep me from getting run over was too expensive! The “term abroad” was actually designed to accumulate capital, right down to the lint in each student’s and instructor’s pockets. I decided to avoid getting run over and didn’t go.

Privatized culture means everything, including your safety is your own responsibility. I’m in mind of this. I’m not fooled.

When Trayvon Martin was murdered I wrote about gated communities and the intersection between a black teen’s death and disability exclusion. I opened my piece this way:

I know something about being “marked” as disability is always a performance. I am on the street in a conditional way: allowed or not allowed, accepted or not accepted according to the prejudices and educational attainments of others. And because I’ve been disabled since childhood I’ve lived with this dance of provisional life ever since I was small. In effect, if you have a disability, every neighborhood is a gated community.  

 

I also wrote:

…as a person who travels everywhere accompanied by a guide dog I know something about the architectures and the cultural languages of “the gate” –doormen, security officers, functionaries of all kinds have sized me up in the new “quasi public” spaces that constitute our contemporary town square. I too have been observed, followed, pointed at, and ultimately told I don’t belong by people who are ill informed and marginally empowered. Like Trayvon I am seldom in the right place. Where precisely would that place be? Would it be back in the institution for the blind, circa 1900? Would it be staying at home always?

I concluded:

There’s a war against black men and boys in this country. There’s also a backlash against women and people with disabilities and the elderly. The forces in all these outrages are the same. The aim is to make all of the United States into a gated community. On the one side are the prisons and warehousing institutions; on the other side, the sanitized neighborhood resorts. I hear the voice: “Sorry, Sir, you can’t come in here.” In my case it’s always a security guard who doesn’t know a guide dog from an elephant. In Trayvon’s case it was a souped up self important member of a neighborhood watch who had no idea what a neighborhood really means. I think all people with disabilites know a great deal about this. I grieve for Trayvon’s family. I haven’t been able to stop thinking about him and will never forget.

I have the happenstance blues and they’re a function of design. Differences, and the welcoming of differences require architectures and expenditures of inclusion. It costs money to include the outsiders. You might have to train security guards, authentic ones to protect Trayvon and Stephen. Imagine if they were able to live in peace, share their stories, and spend their money in your neighborhood. (One can’t forget Trayvon was found dead with skittles and a can of soda, the smallest reckonings of teenage happiness…)

Just as accumulation by dispossession involves the creation of labor-free territories, local dispossession requires the devaluation of the individual. As a disabled man I am Trayvon and he is me.

 

 

 

Disability and Thistle Soup

Disability, understood as a social construct, must stand for resistance to custom much as a thistle represents soup in hard times. One thinks of disability soup as the unlikely but affecting disparity within divergence. In turn social construction is tenuous, febrile, a poor product of imagination. (For years, teaching creative writing, I’ve reminded students imagination is not wholly good as it’s wildly inattentive to reality and committed to paranoia. I think of “normalcy” as construct in much the same way. All the disabled must.)

Thistle and soup. (Moose and squirrel.)

Thistle: custom’s weed. Grows anywhere. Makes a good soup in times of famine.

Resistance: custom’s weed. Grows anywhere. Makes a focused alternative to normalcy’s paranoid fantasies—the worm inside the thistle if you will.

Do you see I’m having fun?

Disability soup: with or without the worm?

I’ll have mine with the worm. Extra protein.

Will this be a good day? Disparity within divergence. Resisting normalcy, foregoing it’s food.

Yes. Having some fun.

Have some thistle soup.

No one uses spoons.

A medicine dropper is best.

You don’t need much.

Henry Ward Beecher once said: “To array a man’s will against his sickness is the supreme art of medicine.”

Just a little thistle soup.

Gives a cripple the strength to get up and do her true divergence.