Disability in the Future Perfect Tense

1.

It’s axiomatic that disability—personal or collective—is generally represented as a pure disadvantage. The word itself comes to us from the Industrial Revolution when disablement signified workers injured on the job. The term is outworn, inexact, and now itself an obstacle to people with physical differences like a bad curb cut.

The future perfect is the verb tense that expresses the idea that something will occur before another action in the future. It can also show that something will happen before a specific time in the future. Example:

By next October the Boston Red Sox will have achieved first place.

As a blind person I’ve lived my life via the future perfect. At 18 I remember saying: “By the time I’m thirty I will be a writer.” The future perfect is critical for ambition. I can and will do this.

The thread-worn term “disability” has no future perfect about it which is why disability activists have taken up the ancient word “cripple” to designate, ironically, that they’re not without capacity. A cripple can work, the disabled cannot. Parse this however you like, the issue for the disabled is how the future will stand as distinct from the past. The future perfect.

The future perfect must be concerned with diversity and center disablement as central to human experience and not as an outlier position. Strictly speaking disability is the inability to perform a major life function—standing, walking, hearing, seeing, processing information, speaking—disablement is broad. Disablement is also part and parcel of every ethnicity and community. It’s at the center of diversity.

When I worked at one of the nation’s premier guide dog schools it became apparent to me that none of the dog trainers spoke Spanish. I pushed for this but was unable to convince my superiors that multi-lingual service and outreach mattered. There are blind folks who do not know that guide dogs are available and are without cost. Blindness is also at the center of diversity.

So the future perfect where disability is concerned is about inclusion but its also about something much more generous than that term may customarily signify: it’s about us. By next October the disabled will have achieved their just place at the table.

2.

The future perfect means understanding our ways beyond the scylla and charybdis of the medical model of disability vs. the social modal. The former suggests that an incurable patient is a defeat for the physician and hence he or she becomes a problem—a living embarrassment for the medical establishment. When I spoke to a graduating class of young ophthalmologists some years ago I said the number one worst thing you can say to a patient is: “I’m sorry, there’s nothing more I can do for you.” What can an eye doctor do for a blind person? Plenty. Why? Because of the future perfect. Even as I type advanced work is happening around the globe in the fight against genetic forms of blindness. What seems incurable now will be curable tomorrow, but not for the patient who disappears and never seeks medical help again because her doctor said good riddance.

I do not argue that the blind need to be cured to be citizens. Which leads us to the social model of disability. The disabled, as evidenced by the word itself are accorded a pejorative or second class status in society. This is a 19th century idea based on the principle that the built environment (the factory world) cannot accommodate a woman without hands. (For example.)
The term reasonable accommodation means, among other things, that redesigning our work environments makes good sense. In the future perfect almost every disabled person is employable. There are a hundred reasons why this matters but let’s put an accommodating work place in a broader context: when facilities are good for the disabled they’re actually better for everyone. This is indisputable. Who, when pushing a stroller, has not been grateful for a wheelchair ramp and an alternative to a revolving door?

3.

Folks who talk about diversity often don’t think of disability as part of the matter. They think of it in purely ethnic or gendered terms. This is understandable because there’s a lot of discrimination that’s still in force and which has not been sufficiently addressed. But the disabled are part of every socially and historically marginalized group. The future perfect says that a blind person of color should have a first rate educational experience no matter where she lives and that her schoolroom should be fully inclusive from the get go.

In the future perfect disability will be understood as cross cultural competency and not as an outlier position.

In his fabulous book “Strategic Diversity Leadership” Damon Williams notes that diversity is protean, that its language changes quickly and that the best university leaders must understand that the movement of identity language has everything to do with the awakening needs of diverse communities. He writes:

“Different people use different words or names to signify membership in a particular cultural group or to define diversity on a broader level. Because these terms can be culturally specific, diversity leaders should not assume they know them. Asking members of the group their preferred term is an essential first step.”

Excerpt From: Damon A. Williams. “Strategic Diversity Leadership.” Apple Books. https://books.apple.com/us/book/strategic-diversity-leadership/id1032365916

The preferred term is about the future perfect. We will not be who we were when other people named us.

Williams adds:

“Strategic diversity leaders must be ready to work with individuals and among communities where once-stable terms and categories are undergoing considerable scrutiny. What matters is that these leaders work to address the profound and continuing challenges that lie beneath these terms, including equality, inclusion, and fairness.”

Excerpt From: Damon A. Williams. “Strategic Diversity Leadership.” Apple Books. https://books.apple.com/us/book/strategic-diversity-leadership/id1032365916

4.

In her now canonical essay “On Being a Cripple” the late poet and memoirist Nancy Mairs (who had M.S.) wrote:

“First, the matter of semantics. I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are “handicapped” and “disabled.” I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering. People–crippled or not–wince at the word “cripple,” as they do not at “handicapped” or “disabled.” Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates /gods /viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.”

In the future perfect the disabled are central to every community and yes, they get to swagger.

Swagger is likely one of the many words first used by Shakespeare. It appears in English for the first time in “A Midsummer Night’s Dream” and its probably a take off on the word swag witch originally mean to sway ostentatiously. As Shakespeare uses it it means to strut in an insolent or defiant manner.

Why would swaggering matter to a cripple?

Because it’s fun. In an inclusive world everyone gets to show off.

5.

Diversity within group identity is the future perfect. The black hip hop artist Leroy Moore who started a group called Krip Hop Nation puts it this way:

“Just like hip-hop is global, hip-hop artists with disabilities are global with common experiences of discrimination inside and outside of the hip-hop arena. These opportunities and my activism during the 1980s propelled my advocacy on activism, disability, police brutality in the US and across the globe.”

In the future perfect disablement is intersectional with all aspects of multiculturalism.

But there’s much more to think about.

Dancing for instance.

Everyone recalls Emma Goldman’s famous quote: “If I can’t dance I don’t want to be part of your revolution.”

Right now disability art is entering, has entered the mainstream. We’re beginning to see television and films from Hollywood make the first turn toward using disabled actors where possible. In the future perfect this will be customary.

We’re seeing more articles and essays about disability by disabled writers in publications like the New York Times.

In the future perfect disability won’t require its own section of the newspaper because it will be part of every diverse groups experience.

In the future perfect Leroy Moore has his own show on TV.

5.

A decade ago, more or less, I was sitting in a room with world class physicians and geneticists who were talking about the genes that cause congenital blindness. They were already finding ways to modify those genes as part of a future perfect plan—to restore sight in children born blind.

During the meeting one of the doctors pulled out of his pocket a brand-new device: the IPhone.

I’d no idea at that moment the iPhone and Apple Corporation would change my life profoundly.
They had the future perfect.

Today’s iPhone allows me to read anything instantly.

When I was a grad student thirty years ago the electronic scanning and reading machine in the university’s library was the size of a Maytag washing machine.

Not only will the iPhone read anything, it will take photos and then describe what’s in them.

The future perfect of disability is swagger, confidence, attainment, ease of accommodation, and respect in the public square.

The future perfect of disability will break down the biological and experiential aspects of identity formation.

The future perfect of disability will be a pure, swaggering agency.

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 

Emmanuel Kant and the Barometer

In the early summer of 1798 Emmanuel Kant decided to publish his lecture notes on metaphysics so that future scholars might use them. The Enlightenment was not without transparency—a matter easily forgotten in late post-modernity. It’s also often forgotten that Kant’s primary research topic was human nature.

For Kant, “virtue” was the point at which morality makes contact with human nature. Lately I’ve been (in my mind’s eye) viewing (daily) the Kantometer—like the barometer it measures pressures unseeable. Its point of departure is virtue as recognized above. There are other indices of course. They’re tiny gradients etched at the margins.

Morality meets the Aristotelian idea of the good, virtue index 12. A good score. Now a certain greasy American senator announces black people should go back where they came from and the Kantometer, measuring the virtue contact drops like the barometer in the Caine Mutiny.

Kant believed virtue and the pursuit of moral life are the duty of humankind.

The Kantometer is busy and mostly sinking.

**

I have tried to be a good man, though I fail, much as anyone must. The clouds come close, deer nest under the apple trees. I fancy vengeance as I want so much to consign all the meretricious bureaucrats to Hell. I ask Jesus to forgive me my lambent distress. I want to be good. I wish the love my animals show me to be merited. I want to be the kind of poet who builds houses for people.

**

I agree with Jurgen Habermas: “each murder is one too many.” I wander around grieving. There is so much death and its industries are fed by good and bad citizens alike. This is why terrorists hate the nation states. Try and locate the moral centers of the United States or France. Refugees stream across uncivil borders desperate for food and medicine and they’re met with realpolitik. Neither Vladimir Putin or Trump wants to save the children of this thirty years war. As I write, the half starved deer are nosing among the daffodils in my yard. I see them as children.

**

How to be good? “Hell isn’t other people. Hell is yourself” (Ludwig Wittgenstein) I think, “even Jesus went to Hell, and he came back, stronger.” We’re here to endeavor for strength. Such proud words. I fail and often. Old Ludwig Wittgenstein often sounded like my Finnish grandmother: “we’re not put here to have a good time.”

I’m the electrolysis of good—you too. That’s how we’re wired. God grant me more volts.

Calling All Enfant Sauvages

Everyone knows what the “enfant terrible” is and to the extent one values resistance to conformity may have a private E.T. Hall of Fame. I’ve had one since junior high school. There are no photos or news clips scotch taped to my walls. It’s all in my head. So who’s in there?

Samuel Beckett; Rosa Parks; Robert Nesta Marley; Sojourner Truth; Leon Trotsky; Carolyn Forche; Wislawa Symborska; John Lennon; Cesar Chavez; Pentti Saarikoski; Frederick Douglas; Richard Wright; Langston Hughes; Chance the Rapper; Voltaire; The Clash; Rodney Dangerfield; Groucho; Allen Ginsberg; all graffiti artists; Wanda Sykes—they were all young and pesky at one time or another—and yes its a long list and unending so long as I have consciousness….Desmond Tutu; Malala despite her saintliness; the young people of Hong Kong and Puerto Rico….

Now a group of enfant terribles is called “enfant sauvage” which means just what you think it means—a savage collection of children. The current putative president of the United States is just now launching his campaign for reelection and his strategy is to label the opposition party enfant sauvages which is to say, primitive, dark skinned, extremist, and dangerous. What’s worse than a socialist? A woman socialist wearing a scarf.

Trump is clever. He will bill his racializing slanders as simple ideology. That will be enough to get the older infants in his corner. We’re going to need a lot more young and angry voters and those formerly known as savages to come out and vote. This is obvious. What’s less clear is whether opposition candidates can sidestep the conditioned interview questions we’ve come to live under—no one questions the questions. The enfant terrible resists conformity. Trump pretended to be one. I think we need a genuine fighter from the left.

I’ll vote for a former savage child but only if she or he understands the plight of Americans who’ve not been helped by Trumpism. By this I mean “deeply” understands. Without such a viewpoint and without this fire the 2020 election will be a humiliating debacle.

I Still Have Enough Money to Eat With….

The testimony of Robert Mueller this week highlighted the dubious and nauseating quality of post-factual American political life: facts matter less than vitriol and spit. The GOP won the day and the impoverished Democrats, stuck with truth have almost nowhere to go.

Amid corruption charges and political intrigue the Dems long standing failure to attract middle class voters has left them powerless. The GOP cares not a whit for election security so long as foreign influence can keep people of color out of Congress and the White House.

Unless facts make a resurgence (doubtful) Trump and his cronies will retain power in 2020.
I’ve come to believe thinly Democratic candidate who has the power of factual persuasion is Elizabeth Warren. She alone understands the debacle of the Dems complicity with Neo-liberalism.

In an era when celebrities and politicians are able to condition their interviewers speaking truth is nearly impossible unless one confronts inequality head on.

The 2020 election must be about inequality period.

These are my two cents on an otherwise lovely morning in Syracuse, New York. I still have enough money to eat with.

A Disability Take on Mueller’s Testimony Yesterday

Watching Robert Mueller’s testimony before the U.S. House of Representatives yesterday I couldn’t escape the sense that both disability and race were twin ghosts in the room. I cannot say with certainty that Mueller has hearing loss but I know when hostile speakers are making it impossible for people to hear them accurately. Several GOP representatives engaged in high speed barking. As a person with a disability I know something about this. As for race, let’s not forget that today’s Republican Party is filled with yesterday’s Democratic southerners—a matter that’s not unimportant because it answers the question so many are asking, namely, why would the GOP not care about the proven Russian interference in the 2016 presidential election and Trump’s role in securing it? The answer is simple: Republicans fear people of color entering the corridors of power and influence more than Vladimir Putin.

Yes there was a third ghost in that chamber: the spirit of illusion, best articulated by James Baldwin long ago: “And have brought humanity to the edge of oblivion: because they think they are white.”

When Donald Trump screams about fake news he’s telling us he knows he’s an illusory man.

So You Elected a Pornographer, Now What?

First things first: wash your hands. It doesn’t matter whether you’ve actually shaken hands with Donald Trump or not. All the major studies agree that frequent hand washing is good for you. My Finnish grandmother once shook Richard Nixon’s hand and then didn’t wash that hand for a month. As far as I know Nixon wasn’t into porn but he certainly had dirty hands.

I’m not an expert in pornography but like a famous Supreme Court justice I know what it is when I see it. We’re now living in the age of decline porn. Every story coming out of Washington or Biloxi is like something out of a soap opera. The National Basketball Association? Soap opera. Congress? You get the gist.

People have to love their porn. They have to wallow. Trump brags about grabbing women by their privates. Abuse ‘em and ditch ’em. That’s how he runs the government, conducts foreign relations, handles his business dealings. The man is a grifter. He’s also the decline pornographer in chief. He tells people the country is in trouble though he inherited a prosperous and largely well run nation. He tells people the dark hordes are coming although immigrants fleeing persecution are part of our national history and social identity. The man is sticky with self loathing, which, as I take it, as a necessary pre-condition for spreading porn.

Yes he’s the decline porn star in chief. He’s the Harry Reams of politicians. (Remember when he boasted during the debates about the size of his thing?)

The decline porn star needs endless dysfunction to succeed in spreading false misery narratives. Remember, he’s only happy when he can abuse and mislead people.

A thoughtful, earnest, truth telling chief executive doesn’t need decline porn–he or she can see the real problems facing the nation and bring decent people together to tackle them.

In order for Trump to spread his stickiness all over the place he needs smaller decline pornographers like Mitch McConnell and Lindsey Graham and countless others with dirty hands to admire his fecklessness and abuse of dignity.

Susan Sontag said famously: “What pornography is really about, ultimately, isn’t sex but death.”

Look at the children and adults dying on our border with Mexico.

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 

Fast Virgin Train, Blindness, and the Talking Toilet

If you’re blind and travel you know a good deal about the world of talking appliances which are designed by sighted people and are intended to help people with vision loss but are really rather goofy: elevators that announce “doors open” and the miserable voices of bank machines. But just this week I met the greatest talking device of them all: the speechifying toilet on the Virgin train from Liverpool to London.

Now the Virgin fast train talking toilet (hereafter known as the VF3T) wasn’t designed for blind people. She was created for morbidly depressed travelers. I call her “she” because I’ve been told her voice is that of a woman who won some kind of contest.

Imagine reading an advertisement: “Be the voice of the Talking Toilet!” and thinking it sounds like a great opportunity. You want to break into the big time, be a star of stage and screen. Surely you’ll work your way up from the crapper. (Whatever happened to being on the radio?)

Picture me in the unfamiliar swaying toilet cubicle. No Braille on any buttons. I can’t figure out how to shut the door. A passing stranger reaches in and says, “Here, I’ll press the shut button for you.”

Poof. Door shut. The toilet starts her speech.

Before saying anything more let me just ask: “who thought that giving a toilet a woman’s voice, an actual human voice was a grand idea?” Of course the answer is “a sighted person” for if you’re blind and groping in a vaguely intimidating water closet hearing the following is piercingly bad:


“Hello there! Welcome to Virgin!”

I was mortified.

Had I entered an already occupied WC?

“I hope you’re having a wonderful day!”

“Did you know there are many splendid traveling opportunities with Virgin?”

“Alright,” I thought, “she’s a toilet bragging about train service. Not a big deal.”

But she continued. She was a kind of self help guru talking up the glories of life, the virtues of moving about the world and the joys of being alive.

The VF3T wants to keep you alive.

The VF3T is designed to prevent disheartened travelers from offing themselves in the loo.

“Aren’t sighted people funny?” I thought.

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 

Corporate Culture and Disability Employment, or Blueberries and Battleships….

While the GOP pushes its anti-unionist “right to work” narrative I think it’s high time the disabled steal the slogan. My global village remains unemployed. The right to work should be a matter of citizenship.

In their 2005 article “Corporate Culture and the Employment of Persons with Disabilities” Lisa Schur, Douglas Krusez and Peter Blanck raised a number of vital questions about business culture and disability: “What role does corporate culture play in the employment of people with disabilities? How does it facilitate or hinder their employment and promotional opportunities, and how can corporations develop supportive cultures that benefit people with disabilities, non-disabled employees, and the organization as a whole?”

(http://disability.law.uiowa.edu/lhpdc/publications/documents/BSL_JanFeb_2005/Corporate_culture.pdf)

One thing that really caught my eye in the article is this prodigious quote:

“When individuals with disabilities attempt to gain admittance to most organizational settings, it is as if a space ship lands in the corporate boardroom and little green men from Mars ask to be employed.”
—John, a 58-year-old employed man with paraplegia.

John, who I’ve not met, is my neighbor in the global village. If, like me, you’re disabled and have a job you’re automatically exceptional though the chances are good you’ll not feel that way. That is, once inside the workplace you’re still a little green man or woman. Meanwhile 6 out of 10 disabled people of working age remain jobless in the United States.

(https://www.brookings.edu/blog/the-avenue/2018/07/25/only-four-out-of-ten-working-age-adults-with-disabilities-are-employed/)

The Schur, Krusez and Blanck article highlights “the taken for granted beliefs” within corporate cultures:

“These ‘‘taken-for-granted beliefs’’ usually are unspoken and often unconscious. More formally, corporate culture at this level consists of a pattern of shared basic assumptions that the group learned as it solved its problems of external adaptation and internal integration, that has worked well enough to be considered valid and, therefore, to be taught to new members as the correct way to perceive, think, and feel in relation to those problems.”

The espoused values of the organization generally reflect what has worked in the past. Inviting green men and women into the community has not been a part of past practice.

**

Now the obstacles to change within organizations are considerable. Several years ago I came across a small pamphlet called Rejoicing in Diversity by Alan Weiss. The subtitle of the booklet was: “A Handbook for Managers on How to Accept and Embrace Diversity for Its Intrinsic Contribution to the Workplace”–-certainly a mouthful and perhaps not much of an advertisement. But I liked the word “rejoicing” and I also liked “intrinsic” for when you put these words side by side they speak of poetry. (The Chinese have two ideograms that stand together for poetry: a figure for “word” and a figure for “temple”). In any event, diversity in the workplace is seldom framed in ways that suggest spirit. Yet at the core of culture, spirit is all there is. Take away politics, real estate, the fighting over which end of the egg to crack and what you have left is the human wish for meaning. We tend to lose sight of this in Human Resources circles, substituting phrases like: Raising the Bar, Leadership, Assets, and the like. Talking about spirit is embarrassing. It’s like talking about the philosophers’ stone. Not even medieval historians feel comfortable talking about alchemy. You might look foolish. And we all know that the workplace should not be foolish.

I have advised many organizations on matters of disability and inclusion over the years. These opportunities came about because my first book of nonfiction was a bestseller and because for a time I was a senior administrator at one of the nation’s premier guide dog training schools. I had the opportunity to travel widely. Between 1995 and 2000 I visited 47 of the states in “the lower 48” and spoke at local, state, and federal agencies and public and private colleges. I have advised lots of blue chip organizations including the Museum of Modern Art in New York, the Metropolitan Museum, the Kennedy Center, even resorts and hotels. Inevitably, wherever I have spoken I’ve heard the rhetoric of middle management: “empowerment”; “equal opportunity”; “productivity”; “zero tolerance”; “bias”; “sensitivity” and the like.

There is nothing wrong with these terms but to paraphrase Bill Clinton there’s nothing right about them either. And this is because the terms have no alchemy in them. They’re just nouns. Not all nouns have spirit inside them. The word “battleship” has no spirit but the word “blueberry” does. One of the first things a poet has to learn is that not all nouns are obedient to the soul.

Well meaning organizations (and some that may not be so) rely on the rhetoric of inclusion without imagining the opportunities for soul–and I mean “soul” the way Marvin Gaye would mean it: its what’s goin’ on. The human soul is present everywhere whether management acknowledges it or not. By way of analogy one can think of management as playing “battleship” while the soul is picking berries. Human souls are looking for ways to be fed and to be happy; management is often trapped in brittle or arid pronouncements.

Alan Weiss wrote:

“I have had the rather unique experiences of providing comprehensive reports to top-level executives on the acceptance of diversity in the workplace, only to have them shout, wide-eyed, “That’s not my company you’re describing!” Yet the feedback has been based on extensive focus group and survey work. Who’s wrong?

No one is wrong. What’s happened is that the respondents have reported what they are actually experiencing, I’ve conveyed that feedback accurately, and the executives are using their own intent and strategy as their frame of reference. The psychologists would call it cognitive dissonance–fully expecting one set of circumstances, while experiencing quite another.

The phenomenon at work is what I call the “thermal layer,” which is a management layer capable of distorting communications and directives it receives, turning them into something quite different. Managers in the thermal layer are the ones who actually control resources, make daily decisions and deal with the customer. They often have strong vested interests in preserving the status quo…think they have a better way of doing things, don’t trust senior management, don’t buy-into the strategy or, for whatever reasons, have some agenda of their own. “

Alan Weiss has perfectly described the breakdown that most often creates obstacles to true diversity and inclusion–or to use the language of the soul, communal berry tasting and picking.

For many years I’ve been asking folks at the universities where I’ve taught to take ownership of disability and accessibility and I have found a deeply invested thermal layer–a phenomenon I like to call the “Campus Rope-a-Dope” to borrow from Mr. Ali. The Campus Rope-a-Dope takes advantage of highly silo-ed administrative hierarchies to in effect pass the buck where disability and accessibility are concerned. Let’s be clear: no one wants to be identified as being part of the thermal layer just as no faculty member wants to be outed for being “dead wood”–and let’s also be clear that the person who persists in calling for blueberries when everyone else wants to talk about battleships will eventually be the victim of considerable distortion.

Alan Weiss again:

“Organizations seldom if ever fail in their intent, executive direction or strategy formulation. They fail in the execution and implementation of their initiatives. Nowhere is that more true than in the accommodation of diversity.”

For my own part I’ve called for universities to provide accessible bathrooms in buildings where I’ve taught. The struggles were astonishing. At the level of departmental administration, no one knows who’s in charge of these matters. That’s because the thermal layer is in charge. And the T.L. has a hundred silos. It also has committees.

I was once upbraided at the University of Iowa by someone from the human resources department. I’d been calling for the installation of assistive technology in the classrooms where I’d been teaching for over three years. The lack of compliance and communication around the issue had been comical and my method of handling it had been to bring my own talking laptop into each classroom and manfully wired it to the projection system–sometimes this worked and sometimes it didn’t. My every teaching experience was therefore a kind of gamble. No one was in charge. How was I upbraided? I was told that by calling attention to my difficulties with assistive technology compliance I’d done considerable damage to my reputation with the committee that handled disability issues–the point being that I’d apparently not gone through the proper channels in my requests for accommodations. This is how the thermal layer works. The thermal layer likes to deflect by distortion. And there were no proper channels.

Alan Weiss:

“How could anyone oppose an accommodating, equal-opportunity workplace?”

“Well, we know that some people can, sometimes with malicious motives, sometimes with prejudicial judgment, and sometimes because they perceive themselves to be adversely affected by the policies. You must be constantly on the watch for thermal zone reactions and distortions. If there’s a policy or value which causes conflict in the workplace, bring it to the surface and discuss openly. If there are misconceptions about policies, resolve them. The failure to do this doesn’t make the policies go away, it simply preserves the thermal layer until, like the executives above, the key decision makers get some shocking news. The reaction to that is usually worse than any other alternative, because senior management will try to legislate change rather than help people to embrace it.”

This brings us back to blueberries vs. battleships. The spirit of diversity vs. the demeaning of diversity initiatives through the employment of thermal language.

Because no one is really in charge when it comes to planning and implementation all disability accommodations are treated reactively and not proactively.

**

Workplace culture is a misnomer. Workplaces are generally affected by habits, old ones, and the thermal layer is where old patterns reside.

The green men and women are afterthoughts.

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 

The Original American Good Man: Walt Whitman Discovers Disability

As we honor the 200th birthday of Walt Whitman it’s worth recalling the poet who praised the human body was also our nation’s first writer of disability memoir. This often surprises people since his great opus “Leaves of Grass” famously celebrates strapping health. In fact one may say Whitman turned physical desire into a sexy religion: America’s body was ecstatic, eternal and spiritually orgasmic. In Walt’s nation there were no bad couplings. That was Whitman circa 1855. Then came the Civil War.

One response to crisis is the making and shaping of a new imaginative body. In his seventies, and having suffered paralysis from a series of strokes, Whitman began collecting, arranging, and then supplementing his civil war prose written while he served as a nurse in the terrible army hospitals in Washington. Revisiting his old journals, their pages literally blood stained, he worked both with his paralysis—he could barely write—while giving shape to a historical moment of national crisis. In effect, Whitman created the first American disability autobiography.

His response to social and personal crises is expertly detailed in a marvelous essay by Robert J. Scholnick entitled, “‘How Dare a Sick Man or an Obedient Man Write Poems?’ Whitman and the Dis-ease of the Perfect Body.” This essay appears in the breakthrough collection, Disability Studies: Enabling the Humanities edited by Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thompson.

Scholnick examines Whitman’s early positioning of the healthy body as a metaphor for a strong democracy and shows how the poet used disability to represent political failure as America headed into the Civil War. Referring to Whitman’s unpublished 1856 essay “The Eighteenth Presidency!” Scholnick notes that Whitman is: “Expressing his belief that a healthy body is a metonym for a healthy nation and, the converse, that an enfeebled body reflects a failure within the body politic…” (248). Scholnick correctly observes that Whitman, who is writing about the political failure of the Buchanan presidency to stop the spread of slavery into the western territories resorts to disabling metaphors:

…[Whitman] deployed a rhetoric of health, disease, and disability to address the national crisis. Describing the supposedly enfeebled political class as “blind men, deaf men, pimpled men scarred inside with the vile disorder, gaudy outside with gold chains made from the people’s money,” in “The Eighteenth Presidency!” he summoned what he imagined as a generation of vigorous young men to take charge. “Poem of the Road” (later titled “Song of the Open Road”) warned that “None may come to the trial till he or she bring courage and health” (Leaves 232). (248) Scholnick observes that Whitman’s disabling metaphors are balanced by a call not just to political health in the United States, but also by a prescriptive exhortation to America’s citizens to practice the art of good health:

Whitman’s urgent summons to his fellow citizens to adopt the practices of healthy living constituted a significant portion of his agenda for America. “All comes by the body only health puts you in rapport with the universe,” he wrote in “Poem of Many in One” (later titled “By Blue Ontario’s Shore”). “Produce great persons, the rest follows,” he affirmed (181). “Poem of the Road” stated flatly, “He travelling with me needs the best blood…” and warned that only the healthy are eligible to join him in the great American procession. (249)

Scholnick quotes Whitman in “Poem of the Road:

Come not here if you have already spent the best of yourself! Only those may come who come in sweet and determined bodies, No diseased person no rum- drinker or venereal taint is permitted here. (249)

In turn, Scholnick details Whitman’s reified and “schizoid” body politic:

In promoting physical health as a means of fostering national stability, control, and improvement, Whitman excluded those lacking the best blood. This exclusion raises the question of just how he and his contemporaries understood the etiology of sickness and disability. (249)

Robert Scholnick’s essay explores how the language of Whitman’s later notebooks displays the poet’s alteration from rhetorical inattentiveness about the disabled body to a position of cultural empathy. By ministering to the maimed and dying soldiers, Whitman faced unimaginable physical suffering. The poet’s prose reveals Whitman’s new and profound appreciation for the literal suffering of men and the spiritual suffering of the nation.

I agree with Scholnick that Whitman is the progenitor of the “disability memoir.” He created a new and wholly conscious rendering of altered physicality in prose. Whitman begins his reminiscence (which he called “Specimen Days”) in a wholly new mode. This is not the metaphorized body of the ideologically constructed man of robust, democratic labor:

Specimen Days

A HAPPY HOUR’S COMMAND
Down in the Woods, July 2d, 1882. — If I do it at all I must delay no longer. Incongruous and full of skips and jumps as is that huddle of diary-jottings, war-memoranda of 1862-’65, Nature-notes of 1877-’81, with Western and Canadian observations afterwards, all bundled up and tied by a big string, the resolution and indeed mandate comes to me this day, this hour, — (and what a day! what an hour just passing! the luxury of riant grass and blowing breeze, with all the shows of sun and sky and perfect temperature, never before so filling me body and soul) — to go home, untie the bundle, reel out diary-scraps and memoranda, just as they are, large or small, one after another, into print-pages. (Whitman 689)

This is Whitman, the disabled poet working to shape and re-shape his memories as well as his present circumstances. He does so with fragments, jottings, things untied, things untidy, nature notes, bureaucratic memoranda… He is announcing his intention to create a “lyric collage” –and by announcing that this is for the printed page he is also announcing that this is a work of art, one created out of a new urgency.

Here is Whitman again, writing of his increasing paralysis and its effect on his ways of living:

Quit work at Washington, and moved to Camden, New Jersey — where I have lived since, receiving many buffets and some precious caresses — and now write these lines. Since then, (1874-’91) a long stretch of illness, or half-illness, with occasional lulls. During these latter, have revised and printed over all my books — Bro’t out “November Boughs” — and at intervals leisurely and exploringly travel’d to the Prairie States, the Rocky Mountains, Canada, to New York, to my birthplace in Long Island, and to Boston. But physical disability and the war- paralysis above alluded to have settled upon me more and more, the last year or so. Am now (1891) domicil’d, and have been for some years, in this little old cottage and lot in Mickle Street, Camden, with a house-keeper and man nurse. Bodily I am completely disabled, but still write for publication. I keep generally buoyant spirits, write often as there comes any lull in physical sufferings, get in the sun and down to the river whenever I can, retain fair appetite, assimilation and digestion, sensibilities acute as ever, the strength and volition of my right arm good, eyesight dimming, but brain normal, and retain my heart’s and soul’s unmitigated faith not only in their own original literary plans, but in the essential bulk of American humanity east and west, north and south, city and country, through thick and thin, to the last. Nor must I forget, in conclusion, a special, prayerful, thankful God’s blessing to my dear firm friends and personal helpers, men and women, home and foreign, old and young. (1298)

In lyric terms this prose is necessary to assure the poet’s survival. Gregory Orr’s useful polarities of lyric incitement come to mind: Whitman is experiencing “extremities of subjectivity” as well as the “outer circumstances [of] poverty, suffering, pain, illness, violence, or loss of a loved one.” As Orr points out: “This survival begins when we “translate” our crisis into language–where we give it symbolic expression as an unfolding drama of self and the forces that assail it” (4).

It’s interesting in this context to note that Whitman imagines his paralysis as part of the unfolding drama of family loss as well as the national trauma of the civil war:

1873. — This year lost, by death, my dear dear mother — and, just before, my sister Martha — the two best and sweetest women I have ever seen or known, or ever expect to see. Same year, February, a sudden climax and prostration from paralysis. Had been simmering inside for several years; broke out during those times temporarily, and then went over. But now a serious attack, beyond cure.

Dr. Drinkard, my Washington physician, (and a first-rate one,) said it was the result of too extreme bodily and emotional strain continued at Washington and “down in front,” in 1863, ‘4 and ‘5. I doubt if a heartier, stronger, healthier physique, more balanced upon itself, or more unconscious, more sound, ever lived, from 1835 to ’72. My greatest call (Quaker) to go around and do what I could there in those war-scenes where I had fallen, among the sick and wounded, was, that I seem’d to be so strong and well. (I consider’d myself invulnerable.) But this last attack shatter’d me completely. (1297-1298)

One notes Whitman’s use of military metaphors to describe the onslaught of paralysis: the disease “broke out” and “then went over” –figures that suggest the illness has scaled the healthy wall of his body, the fortress of self. It’s interesting also to note that Whitman arrives at this correspondence between his paralysis and the national trauma of the civil war by way of his doctor who believed that the strain of working in wartime hospitals was the likely cause of Whitman’s stroke.Describing his youthful and healthy body Whitman writes, “I doubt if a heartier, stronger, healthier physique, more balanced upon itself, or more unconscious, more sound, ever lived, from 1835 to ’72” (1297-1298).

By distinction Whitman as the writer of lyric prose is no longer unconscious and balanced but self-conscious and obviously unbalanced. This “imbalance” is reflected by the unevenness of the memoir. Sentences read like fragments. Memories and the contemporary circumstances of the writer are narrated “paratactically” –the past and the present are presented side by side.

One is reminded of the contemporary American poet Gregory Orr’s assertion that:

…our instability is present to us almost daily in our unpredictable moods and the way memories haunt us and fantasies play themselves out at will on our inner mental screens. We are creatures whose volatile inner lives are both mysterious to us and beyond our control. How to respond to the strangeness and unpredictability of our own emotional being? One important answer to this question is the personal lyric, the ‘I’ poem dramatizing inner and outer experience. (4)

In the case of Whitman’s lyric prose this instability links with the art of memory to address the very meaning of the lyric self: the self that possesses comic irony—a self that understands it is a shaped thing. It can be shaped by personal or physical suffering or by social forces. Whitman ends “Specimin Days” by speculating about the divine or philosophical nature of suffering:

Just as disease proves health, and is the other side of it. . . . . . . . . The philosophy of Greece taught normality and the beauty of life. Christianity teaches how to endure illness and death. I have wonder’d whether a third philosophy fusing both, and doing full justice to both, might not be outlined. (1300)

Here Whitman, writing in paralytic bursts, wonders about the construction of normalcy and its origins in stoic philosophy Then in one swift lyric shift, he wonders about the Christian view of illness, a view which leads in Western civilization to the so called “medical model” of disability. This is the “I” of lyric prose, working its way through inner and outer experience. The “I” of lyric prose assembles its greater sense of irony from scraps.

Whitman’s lyric prose is more than the short hand for a self help book. The prose he wrote in crisis lead him away from his early figurative representations of the muscular
democratic body. He wrote in the civil war hospitals on pages stained with the blood of dying soldiers. He wrote fast and he wrote about something larger than ideological metaphor:

FALMOUTH, VA., opposite Fredericksburgh, December 21, 1862. — Begin my visits among the camp hospitals in the army of the Potomac. Spend a good part of the day in a large brick mansion on the banks of the Rappahannock, used as a hospital since the battle — seems to have receiv’d only the worst cases. Outdoors, at the foot of a tree, within ten yards of the front of the house, I notice a heap of amputated feet, legs, arms, hands, &c., a full load for a one-horse cart. Several dead bodies lie near, each cover’d with its brown woolen blanket. In the door-yard, towards the river, are fresh graves, mostly of officers, their names on pieces of barrel-staves or broken boards, stuck in the dirt. (Most of these bodies were subsequently taken up and transported north to their friends.) The large mansion is quite crowded upstairs and down, everything impromptu, no system, all bad enough, but I have no doubt the best that can be done; all the wounds pretty bad, some frightful, the men in their old clothes, unclean and bloody. (712)
In the Preface to Leaves of Grass Whitman wrote, “All beauty comes from beautiful blood and a beautiful brain” (11). As the writer of lyric prose Whitman writes:
I must not let the great hospital at the Patent-office pass away without some mention. A few weeks ago the vast area of the second story of that noblest of Washington buildings was crowded close with rows of sick, badly wounded and dying soldiers. They were placed in three very large apartments. I went there many times. It was a strange, solemn, and, with all its features of suffering and death, a sort of fascinating sight. I go sometimes at night to soothe and relieve particular cases. Two of the immense apartments are fill’d with high and ponderous glass cases, crowded with models in miniature of every kind of utensil, machine or invention, it ever enter’d into the mind of man to conceive; and with curiosities and foreign presents. Between these cases are lateral openings, perhaps eight feet wide and quite deep, and in these were placed the sick, besides a great long double row of them up and down through the middle of the hall. Many of them were very bad cases, wounds and amputations. Then there was a gallery running above the hall in which there were beds also. It was, indeed, a curious scene, especially at night when lit up. The glass cases, the beds, the forms lying there, the gallery above, and the marble pavement under foot — the suffering, and the fortitude to bear it in various degrees — occasionally, from some, the groan that could not be repress’d — sometimes a poor fellow dying, with emaciated face and glassy eye, the nurse by his side, the doctor also there, but no friend, no

relative — such were the sights but lately in the Patent-office. (The wounded have since been removed from there, and it is now vacant again.) (717-718)

Think of Whitman writing after a series of strokes, revisiting his old notebook pages, tying them together with seasoned reflections on his diminished body. By gathering “Specimen Days” and arranging its pages, Whitman claimed disability—both for himself as well as the civil war veterans. Claiming disability requires claiming the lyric. If people with disabilities have been exiled by history, by the architectures of cities and the policies of the state, then the lyric and ironic form of awareness is central to locating a more vital language. The lyric mode is concerned with momentum rather than certainty. This is the gnomon of lyric consciousness: darkness can be navigated. The claiming of disability is the successful transition from static language into the language of momentum. But of particular importance in this instance is the brevity of the lyric impulse. The urgency of short forms reflects the self-awareness of blocked paths and closed systems of language. The lyric reinvents the psychic occasion of that human urgency much as a formal design in prosody will force a poet to achieve new effects in verse. Igor Stravinsky put it this way: “The more constraints one imposes, the more one frees one’s self. And the arbitrariness of the constraint serves only to obtain precision of execution.” We are in a hurry. We must tell the truth about the catastrophe that is human consciousness. And like Emily Dickinson who feared the loss of her eyesight we will tell the truth but “tell it slant”—the lyric writer may not have a sufficiency of time.
Twice then we see Walt Whitman, lacking a sufficiency of time, writing the lyric claim.

Citations:

Orr, Greogry. Poetry As Survival. Athens: The University of Georgia Press, 2002.
Scholnick, Robert J. “‘How Dare a Sick Man or an Obedient Man Write Poems?’ Whitman and the Dis-ease of the Perfect Body.” Disability Studies: Enabling the Humanities. Ed. Sharon L. Snyder, Brenda Jo Brueggemann and Rosemarie Garland-Thomas. New York: The Modern Language Association of America, 2002. 248-259.
Whitman, Walt. Complete Poetry and Collected Prose. Ed. Justin Kaplan. New York: Library of America, 1982.

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 

Your Astrology

If you were born on this date

It was likely wartime

And hardly your fault

Though it was likely wartime.

America eats with a baby spoon

But this is not your fault

A violent infant state

Is scarcely your fault.

It was wartime

And the pond where you were born

With its oxidizing auto

Was not your fault.

An infant state

Is not your fault.

A violent state

Is scarcely your fault.

No one can blame you

For the martial music.

Yes I stare at my mirror

Leaning close as the blind do

And I declare

This isn’t mine

Though it is

As Poe knew—

This telltale

War-heart

Mine and yours

You can look it up.

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