The Ableist Shrug at Licorice University

Ableism: I’m the problem. I didn’t get cured. Didn’t stand up. Couldn’t read the books with my peepers. “Jeepers Creepers, where’d you get those peepers?” 

Good eyes are productive, produce results; bad eyes, get cured baby! 

Ableism: a term no one likes. Like licorice. (No one really likes licorice. Studies have shown this to be true.) 

What if I substitute “licorice” for ableism? Would it be easier to talk about? 

Licorice: a set of beliefs that hold everyone must like licorice. All licorice eaters are equal but some are more equal than others. If you don’t favor Glycyrrhiza glabra you can’t sit at the table. The great big licorice table. 

Note: too much licorice will poison animals and humans. But that doesn’t mean there aren’t whole cities of licorice. 

Side note; when I was a boy in Finland, licorice candies were sold in bite sized pieces, wrapped in wax paper featuring a cartoon of a little black child. 

Licorice is not innocence. 

Ableism: a predominant belief that discrimination against the disabled is just a matter of innocence. E.g. “We really care about disabled people. What’s that? You can’t get basic accommodations? Oh dear. That MUST be awful! I’m sorry you feel that way!”

Ableism: the disabled have ungoverned feelings. That’s their problem. Really. It is their problem not ours. 

I call the example just above “the ableist shrug”—universities are especially good at this. 

Back to licorice: “So Billy, you don’t like licorice? Then you can’t be in our club house!”

Ableism is infantile. 

The shrug is privilege. It’s not convenient to think about those people today. Perhaps we will get to them tomorrow. 

I’m sorry you feel that way.

Candy can represent hegemony. Finnish candy. 

The shrug: we are good people. We care about you. But your accommodation is way down on our list of priorities, because, well, how do I say this? You’re not in our budget. Not in our plans, not convenient, yes, that’s it! You’re really really really not convenient. We love convenience here at Licorice University. We may talk big about being the best! Frankly, business as usual is just fine. We especially like the Licorice Clubhouse. 

Shrug:  the word comes from Late Middle English and it originally meant “to fidget”—and fidget is an early Modern English word meaning “uneasy”—the shrug, the licorice ableist shrug signifies that disability makes the ableist both uneasy and vexed. Having to think about disability is nettlesome. 

When the disabled bring up their problems—lack of access to buildings, bathrooms, educational materials, transportation, zero dignity in the village square, the shrug works this way: 

  • We personalize the problem. 
  • It’s the disabled person’s difficulty not ours.
  • All disabled people are just failed medical patients. 
  • If you can’t be cured, you’re a failure as a human being.
  • While the disabled are talking, we look at our iPhones.
  • We all know there’s something wrong with the disabled, it’s below the surface, like icebergs.
  • You can’t see it, but below the waterline they’ve got bad attitudes. 
  • If the disabled just had better attitudes. 
  • When the disabled say, “we really hate it here” you say: “I’m sorry you feel that way.”
  • Which means the problems are not about accessibility and inclusion but all about the individualized disabled person.

If you were the right kind of disabled, (Tiny Tim for example) you’d be grateful for the little we’ve given you. “I know it’s a dinky crutch, hand made by your impoverished father, but it’s yours Tiny. It’s yours!”

 

 

Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
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Have Dog, Will Travel by Stephen Kuusisto

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger 

Disabling Your Enemy is Terrorism

During the past month of demonstrations along the border between Gaza and Israel, at least 17 Palestinians have suffered gunshot wounds that ultimately cost them their legs, according to the Palestinian Health Ministry in Gaza.

The Washington Post

Lest it’s lost on anyone the purpose of warfare is not to destroy enemy combatants but to shatter their village square. Disablement is a strategy, rape is a policy, affecting civilian casualties, all are matters of policy.

Disablement isn’t an unfortunate side effect of protests in Gaza as the Israeli Defense Force’s argument has it. Disabling civilians is overtly designed to shatter not just legs but the human will to freedom and dignity. What is the best semiotic for imprisonment and despair? Disability of course. Disability as a practice of war is criminal. It doesn’t matter who is producing the disablement. Disabling your enemy is an act of terror.

Terrorism is defined in Title 22 Chapter 38 U.S. Code § 2656f as “premeditated, politically motivated violence perpetrated against noncombatant targets by subnational groups or clandestine agents.”

Nations that paralyze their enemies should be forced to pay for their health care.

Think how quickly that would put a stop to war.

Yeah. That’s what I think.

Two days ago I took an Uber ride. My driver was from Iraq. He told me that his wife has a master’s degree, he has a master’s, his children are in college in the US.

I told him how angry and ashamed I am that the United States has killed one million civilians in his land.

He got out of the car and we hugged. We stood there, uneasily on the street, my guide dog looking on. Who provides guide dogs to Iraqi children? No one.

Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
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IndieBound.org

Have Dog, Will Travel by Stephen Kuusisto

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger 

Disability, Expectation, and a Just a Whiff of Episcopalianism

“I expect color to be used against me,” writes John Edgar Wideman in the closing story of his latest collection American Histories. “Amen,” I think, early, the sun not up, reading alone with my talking computer. Race is the first they “they” see—the predatory “they” ruthless, short tempered and ubiquitous—good God is it everywhere. And the sun not up, alone, I want to reach through circuits and virtual pages and shake Wideman’s hand.

Each of us does her or his or they own dance with the expectation of disadvantage in advance. If you’re black, or Latinx, or queer, or disabled you are far more likely to live this on a daily basis. Not likely. I take that back. One does. What was I thinking?

I expect disability to be used against me.

Long ago I read a definition of resentment which I can’t attribute or source: resentment is drinking poison and waiting for others to die.

I not only expect but know disability will be used against me so how do I escape the poison-resentment-complex? Or “we”—how do we do it? Black, queer, neurodivergent, women in male dominated professions, in my case blind at a university that has poor support services for the disabled and more than passing hostility?

I don’t like poison. It tastes like wormwood and iodine. Trust me I know what it tastes like.

When I’m home alone, after a day of discriminatory treatment, being told to shut up, etc., I think, as I’m sure Wideman must, “I’m a good guy; I’m funny; I like people, why is this happening to me?”

That’s the effect of the poison. Swallowing it you fall into false consciousness, a false expectation about others. You think they’re supposed to change and you’re dying inside and the ableist, racist, homophobic people go on happily about their business. As Auden says famously in his poem Musee des Beaux Arts—suffering is unnoticed by the privileged. He says it better. Read the poem.

The key to having a good life when you know your difference is going to be used against you, perhaps in a minute, perhaps later this afternoon is mysterious and there are few prescriptions in tablet form or in holy books that are proper anodynes. I love the psalms. I adore Eleanor Roosevelt: “No one can make you feel inferior without your consent.” Shit, I’m an Episcopalian. I have whole passages of the New Testament memorized. I love Christ not for his suffering but his transcendence of it. He’s both the king of those who are mocked and of those who persist in love. But I’ll admit it: most days Jesus is too mystical for me when I’m struggling disabled in a hostile world.

I expect disability to be used against me.

It’s that word “expect” that’s the killer.

Expect is related to spectacles. It comes from Latin “to look out”.

Later it comes to mean imagining things that will happen. Somewhere in the 16th century the word transitioned from “fact” (to see what’s coming) to fiction—one of the pejorative dynamics of imagination, suspecting things will happen because they’ve happened in the past. I often tell creative writing students only ten percent of imagination is worthwhile. That estimation may be generous.

This is the poison of imagination. I expect the next bad thing. Ungoverned this becomes depression. The depressed imagination sees everything in the world as equal and equally bad.

Wideman’s literary character is correct: race will be used against him. Finding love in the face of this is the most difficult challenge of all. We can invent machines that defy gravity but so far no machine has defied hate.

I like to think they’re working on this at MIT—maybe something like an aluminum spaghetti colander with wires sticking out that you wear on your head and with a flip of the switch voila hate disappears and water turns into chablis.

As far as I know—not far of course—is the only machine that can zap hate is the imagination which we’re currently under utilizing. Like the oft repeated maxim that we only use ten percent of our brains, we simply fail most days to push our imaginations toward loving others.

I expect to be disliked. It’s a certainty. This is the story of Christ. It’s the story of my neighbor.

I expect to be more loving. Will start today.

I expect to spit. (Expectorate)

“I tell you, you will not see the new beauty and the truth, until you make up your minds to spit.” (Malevich, Essays on Art)

Aim carefully.

Read John Edgar Wideman.

Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

Have Dog, Will Travel by Stephen Kuusisto

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger 

Optimism, Cripples, Family Bibles, and Good Old John Rawls….

“Call me Ishmael” says the family bible which sits lithically on its shelf and which no one has opened since grandmother died. “Please call my Ishmael” it says, adding: “let me wander to the far off houses…” But the Bible you see is like an impoverished man who must sit and sit. In this way the old thing is like a cripple alone in a back room in a farm house in a country town. The lame one who, if revealed, will spoil the daughter’s arranged marriage. Try this if you think I’m kidding: take the dark, thick, dusty family bible into the street and offer it to passersby and see what happens…

**

“Change the subject,” says Uncle History. He’s sick of religion. I don’t blame him. “Let’s have some of those American prunes,” he shouts.

Meantime: Pierre Fournier, Beethoven, Sonata for Cello and Piano #1 in F.

**

“For the most part I examine the principles of justice that would regulate a well-ordered society. Everyone is presumed to act justly and to do his part in upholding just institutions.”

John Rawls “A Theory of Justice”

Oh Rawls, you were such a willful optimist. But you see, I struggle with you—yes, you’ve a fictive epistemology; yes, the rights of the disabled derive from just such optimism.

The lesson: imagine rational utopias. Evidence may come later.

**

Meanwhile the disabled, people like me, we trouble the mechanisms.

**

I want more patience. Dear Rawls…..

**

So the river with all its catfish is filled with various kinds of music. Let’s get that straight.

**

“But the main reason we are so anxious about the genomic revolution is that we are psychologically equipped to misunderstand it. Unlike, say, the study of subatomic physics, where almost no one outside of the physics community feels that he or she can make heads or tails of it, the notion that we possess genes that make us who we are makes intuitive sense. But it turns out that conclusion is inaccurate, or at least imprecise. Yet we persist in this belief that our genes control our lives. We are genetic fatalists.”

Excerpt From: “DNA is Not Destiny.” iBooks.

And so, back to the dark toad family bible….

I picture a two horse race: science is in the lead, but wait, here comes superstition…oh my, this race is coming down to the wire!”

**

For me, well, it takes a bus load of Beethoven to get by.

Piano and cello off shore in a boat….

**

Please, I just want a horse race where the animals are trained with optimism and no one gets hurt.

Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

Have Dog, Will Travel by Stephen Kuusisto

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger 

Fear of Falling, Twenty Times Each Day

I walk up and down stairs while I’m awake and as far as I know I don’t do it in my sleep. Stairs are bad enough in my waking life. My blindness means every set of steps will be both challenging and vaguely frightening. Often walking with sighted friends they sail down staircases talking all the while as I nervously feel my way with electrostatic feet. I’ve always loved James Tate’s line: “when riding an escalator I expect something orthopedic to happen.” Me too James. Or worse. I expect to fall face forward into death’s arms.

No matter how proficient you are at traveling blind you’re always aware of the manifold instances when, frankly, you’re risking physical harm. It is not fashionable to say this. What’s fashionable is to assert blindness is a minor inconvenience—with the proper accommodations it is practically nothing.

And then there are stairs, intersections, drunk drivers, distracted bicycle messengers, tiny revolving doors, all the daily invitations to behead myself.

On the surface I appear collected. Underneath, even with a guide dog by my side I feel that old fear of falling, feel it at least twenty times a day.

Connie Kuusisto :
Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available:
Amazon
Barnes and Noble
IndieBound.org

Have Dog, Will Travel by Stephen Kuusisto

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger 

I Just Lost My Civil Rights Thanks to the GOP

Yesterday, February 15, 2018 the U.S. House of Representatives voted 225-192 to gut the Americans with Disabilities Act.   The bill known as “The ADA Education and Reform Act, or H.R. 620” is designed, so its proponents argue, to prevent frivolous “drive-by lawsuits” brought by lawyers who see inaccessible businesses and want to capitalize on the problem. The bill requires those filing against businesses for violating the ADA to first give business owners 60 days to describe how they’ll fix the problem. Then they have another 120 days to implement the changes. Sounds reasonable right? But the bill is actually designed to make the problem of lawsuits go away and does not put any onus on businesses to actually make changes.

As the Consortium for Citizens with Disabilities correctly notes: “H.R. 620 would create significant obstacles for people with disabilities to enforce their rights under Title III of the Americans with Disabilities Act (ADA) to access public accommodations, and would impede their ability to engage in daily activities and participate in the mainstream of society. Rather, the burden of protecting the right to access a public place is shifted to the person with the disability, who first has to be denied access; then must determine that violations of the law have occurred; then must provide the business with specific notice of which provisions of the law were violated and when; and finally, the aggrieved person with the disability must afford the business a lengthy period to correct the problem.”

The “lengthy period” is a red herring as the bill’s supporters know. Again from the Consortium for Citizens with Disabilities: “We know of no other law that outlaws discrimination but permits entities to discriminate with impunity until victims experience that discrimination and educate the entities perpetrating it about their obligations not to discriminate. Such a regime is absurd, and would make people with disabilities second-class citizens.”

As of this morning my civil rights and the rights of over 50 million Americans are now in jeopardy. Like thousands in the disability community I’ve watched with growing alarm as a well organized largely Republican lead coalition both in state and federal government has moved aggressively to weaken or even eliminate the rights of the disabled. Betsy DeVos has instructed the Department of Education to look the other way when matters of equal access for students with disabilities are on the table. Congress and the Trump administration are cutting Medicate.

These are outrageous developments.

Imagine this scenario if you are not disabled. One day you decide to go to a commonplace establishment. A popular eatery or coffee joint. When you get there the owner says, “Well, I don’t like serving  people with cartoon character tee shirts.” Then he adds: “Mickey Mouse violates my decor. And I don’t have time or resources to change my decor” You’re turned away.

Do you think this analogy is fatuous? I admit it seems ludicrous. But the principle is the same. The shop owner has made a decision, rather consciously, that there’s a type of customer he doesn’t want. Rather than admit his prejudice he complains that resolving the issue will likely cost him plenty. He tells you to go away.

Imagine that you then had to explain through lengthy filings why your rights were violated. Then further imagine that the owner has almost unlimited opportunities to do nothing.

How does that grab you?

Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

Have Dog, Will Travel by Stephen Kuusisto

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger 

No to H.R. 620, No to the GOP, Defend the Disabled!

Some days are hard to bear—you’re a single mom and rent is due. You don’t know where that money is coming from. Child care is hit or miss. Your children are sick and what meagre health insurance you have is being depleted by politicians who imagine poverty is a moral weakness.

There’s a lot of “moral weakness” going around these days in the United States. If you listen to GOP senators, and house representatives you hear that the lame, the halt, the poorest among us are undeserving of public help. There’s something wrong with them, according to the right wing narrative. They’re lazy. Feckless.

The disabled are part of this objectified collection of wanton souls. We’re costly. What with our needs for ramps and Braille and breathing tubes. What with our claims on health care. It’s hard to escape the lingering horror of Adolf Hitler’s dictum that the disabled are just “useless eaters.” The aggressive, rightward tilt of the GOP leans toward the wholesale elimination of Medicaid and deep cuts in medicare. This isn’t some kine of fiction—fake news—the GOP is working overtime to make sure the elderly, the poor, and the disabled have no supports to help them live. Pro-life party indeed.

Right now the GOP is pushing in the house a bill (H.R. 620) which is the product of long standing and relentless lobbying by organizations like the Better Business Bureau, and which is designed to eliminate the capacity of the disabled and their allies to sue businesses for willfully ignoring the accessibility provisions in the Americans with Disabilities Act. Here are some basic bullet points that have been shared nationally by The Disability Rights Education and Defense Fund.

HR 620 will eliminate the need for businesses to be accessible until a complaint is received; there will be no need to make a business accessible until someone complains; that will mean many groups building new buildings, renovating buildings, opening new businesses will not make their services accessible

HR 620 shifts the burden of accessibility from those who offer services to the person with a disability; no other group needs to prove their right to access to publicly offered services

We should not be gutting the rights of people with disabilities; if there is a problem, we should be limiting the actions of a small number of lawyers who are bad actors

HR 620 will take away the civil rights of people with disabilities; would we ever think about eliminating the rights of any other group of Americans? This is disgraceful.

You can read more about H.R. 620 and the cover language the GOP is using to confuse the public about the bill here:

https://dredf.org/wp-content/uploads/2017/08/myths-and-truths-about-the-ada-education-and-reform-act.pdf

**

What does it mean when a nation decides that the most vulnerable of its citizens should be stripped of their rights to participate in civic society? What’s the deep text underscoring predates of the weak?

The answer lies in right wing melodrama. Like the Third Reich, today’s Republicans have a scarcity narrative which is predicated on the idea that Mom and Pop America won’t get what’s due them if we take care of these obviously non-productive people. That we’ve come down to this just 28 years after the wholly bi-partisan adoption of the ADA is both horrifying and quite telling. Not long ago I was at an event in Washington, DC where former U.S. Senator Bob Dole, a wounded veteran, who championed the ADA said openly, “Today I fear that law could never pass on Capitol Hill.”

Please, if you’re reading this, call your local U.S. Representative and say “No!” to H.R. 620.

Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org