disability – Planet of the Blind

The Truth About Taxicabs and Ride Shares and Disability

I’ve been blind all my life and have traveled with guide dogs at my side for the past thirty years. Since guide dogs are trained to watch for traffic and take evasive maneuvers to avoid danger, my dogs have opened up limitless horizons for me, enabling me to travel across the globe. And I have: from Helsinki to Milan; San Francisco to Miami. But there are places I can’t go despite laws which say I can—for even though service dogs are permitted everywhere the public goes, taxi cabs and ride share services often discriminate against me.

There are very few service dogs in the United States. The number is likely somewhere around 30,000 when one includes dogs trained to assist with all kinds of disabilities and not just blindness. The odds of meeting a service dog team are not high. I like to say we’re the few, the proud, the canine-human equivalent of the Marines. We’re exceptionally trained. How many times have I been in a restaurant with my dog lying still under the table only to have other customers remark with pleasure and admiration when we get up to leave. They say: “I didn’t know there was a dog under there! That’s amazing!” A service dog is not just polite, it knows how to be an ambassador for the distinction of working dogs everywhere.

So wha’t with the cabs and ride shares? The drivers pull up, see the guide dog and drive away. Or they roll down their windows and complain loudly that they won’t take a dog. When I say its a guide dog and its allowed in their vehicle by law, well, you guessed it, they drive away. This has happened to me dozens of times over the years. Sometimes I ask a stranger on the sidewalk to flag me a cab and open the door and then I jump in. Sometimes I report the ride share driver to the head office. But nothing stops the discrimination.

Wheelchair users also face ride refusals. This has lead me to understand that the problem isn’t the dog at all. It’s the stigma associated with disability. In his famous book “Stigma: Notes on the Management of Spoiled Identity” Erving Goffman reminds us that deviant physicality has a long history: “The Greeks, who were apparently strong on visual aids, originated the term stigma to refer to bodily signs designed to expose something unusual and bad about the moral status of the signifier. The signs were cut or burnt into the body and advertised that the bearer was a slave, a criminal, or a traitor—a blemished person, ritually polluted, to be avoided, especially in public places. Later, in Christian times, two layers of metaphor were added to the term: the first referred to bodily signs of holy grace that took the form of eruptive blossoms on the skin; the second, a medical allusion to this religious allusion, referred to bodily signs of physical disorder. Today the term is widely used in something like the original literal sense, but is applied more to the disgrace itself than to the bodily evidence of it.”

People like me represent signs of physical disorder and even though our dogs are cute we’re to be avoided. I’ve come to realize its not the dog that’s the problem its my own physical presence. Yes, I now believe the drivers who refuse me would happily take the dog and leave me behind.

D.H. Lawrence, Disability and Two Fires in the Mind

When I entered college in 1973 I found no one was teaching Lawrence. He was considered a kook. At best he was a polemicist for psychoanalysis and at worst a pornographer but in any case professors assured me he was nothing more. If you wanted an English moralist you were instructed to read Hardy.

I fell in love with D. H. Lawrence as a high school student. His poems reached me first; then the essays. I don’t know if it matters what kind of reader I was back then. We spend so much time pre-fronting our subjectivities nowadays but yes I was legally blind. I read what I could get via long playing records and tapes from the Library of Congress. I listened slowly and in more than ordinary solitude. (It wasn’t possible in those days to hear a record while sitting under a tree.) I received my Lawrence in dark rooms.

The photo on my freshman I.D. shows a boy-child who was 5′ 6″ tall and weighed 102 pounds. I’d barely survived a bout of adolescent anorexia. I started reading poetry in the hospital. I read this:

“The Uprooted”

People who complain of loneliness must have lost something,
lost some living connection with the cosmos, out of themselves,
lost their life-flow
like a plant whose roots are cut.
And they are crying like plants whose roots are cut.
But the presence of other people will not give them new, rooted connection
it will only make them forget.
The thing to do is in solitude slowly and painfully put forth new roots
into the unknown, and take root by oneself.

Of course I read all the poems of Lawrence I could find in recorded formats. “The Ship of Death” with its Egyptian incense, “The Snake” and the lesser known “Almond Blossom”:

“Trees suffer, like races, down the long ages.
They wander and are exiled, they live in exile through
long ages
Like drawn blades never sheathed, hacked and gone black,
The alien trees in alien lands: and yet
The heart of blossom,
The unquenchable heart of blossom!”

If you’re lonely by circumstance and you’re in “alien lands” then you’ve got to make something of it. You must believe the “unquenchable heart of blossom” is the signature of all things.

Lawrence was disabled. Like so many people born in the latter part of the 19th century he had tuberculosis. He was born on September 11, 1885. He was ten years younger than Thomas Mann who’s canonical novel “The Magic Mountain” offers the best description of the social psychology of TB.

No one has written with greater lyric urgency and intelligence than Lawrence about the side by side flames of soul and death. And yes eventually they become one flame but our work is different for now. We must adore them both:

“Medlars and Sorb-Apples”

I love you, rotten,
Delicious rottenness.

I love to suck you out from your skins
So brown and soft and coming suave,
So morbid, as the Italians say.

What a rare, powerful, reminiscent flavour
Comes out of your falling through the stages of decay:
Stream within stream.”

Jeffrey Meyers writes in his excellent biography of Lawrence:

“Lawrence’s life and character were strongly influenced by the progress of his disease. He had (at various times) all the symptoms of consumption, which intensified toward the end of his life. He suffered from irregular appetite, loss of weight, emaciation, facial pallor, flushed cheeks, unstable pulse rates, fever, night sweats, shortness of breath, wheezing, chest pains, frequent colds, severe coughing, spitting of blood, extreme irritability and sexual impotence. The toxemia of Lawrence’s lungs influenced the state of his mind and provoked febrile rages. As John Keats had told Fanny Brawne, emphasizing the gulf between the sick and the well: “A person in health as you are can have no conception of the horrors that nerves and a temper like mine go through.” Witter Bynner wrote of Lawrence’s stoic attitude but uncontrollable anger: “He had never given me any evidence of his illness by complaint in words or faltering in spirit but only by bursts and acts of temper.”

One supposes Bynner wasn’t much of a reader when it came to Lawrence’s poetry since poem after poem stills us, stands us on the by turns dark, then evanescent unseeable line between living and dying; between apprehension and the vatic. Here’s the end of
“Medlars and Sorb-Apples”:

“Sorb-apples, medlars with dead crowns.
I say, wonderful are the hellish experiences,
Orphic, delicate
Dionysos of the Underworld.
A kiss, and a spasm of farewell, a moment’s orgasm of rupture,
Then along the damp road alone, till the next turning.
And there, a new partner, a new parting, a new unfusing into twain,
A new gasp of further isolation,
A new intoxication of loneliness, among decaying,
frost-cold leaves.”

“Parting, partner, infusing, twain,” “a new gasp of further isolation.”

This is conceivably the greatest description of disability as lived experience at the hot core of soul and body as they engage in tug of war.

Disability, Pornography, Kompromat, and Trump

Kompromat in this instance employs paraphilia: abnormal sexual attraction, and at “The Act” Trump was treated to the sight of a deformed blind man as sex toy– a convoluted projection of teratophilia–a sexual attraction to deformed people or monsters.

In a ghastly but revealing article over at The Washington Post
Aaron Blake details some of the overlooked details in the Senate’s findings about Donald Trump and Russia. There’s the usual fawning over Putin, Trump’s beseeching of oligarchs, a probable affair with a woman (kompromat) while “the Donald” was in Moscow for the Miss Universe pageant…and then there’s this:

“And two witnesses — Rob Goldstone and former Trump lawyer Michael Cohen — recall the Agalarovs and the Trump team visiting a club that featured a strange show which Cohen said involved a “sex act.”

Goldstone, a Brit who later served as an intermediary for the 2016 Trump Tower meeting, said Trump bodyguard Keith Schiller approached him about the proposed trip to a club called The Act, where an associate of Emin Agalarov was an investor. “Mr. Trump wants to come,” Schiller said, according to Goldstone.

Cohen described the club as “more than a burlesque club” and a “wild place.” Here’s Cohen’s recollection

He said the show that night featured a “young man” in a body suit who was blind and, in Cohen’s estimation, appeared to have suffered from birth defects. He said the man sang a patriotic song while a large woman in a thong bikini performed “sex acts” on him.”

Straight away my ears perked up–(I read with a screen reader) here’s kompromat meets disability meets freak show. Evers to Tinker to Chance.

In her book “Media, Performative Identity, and the New American Freak Show” Jessica L. Williams writes: “The freak show succeeded…because it reinforced binaries about gender, race, and ability but its failure was cemented when scientific advances and human rights issues altered the ways viewers saw otherness. ”

In other words, the freak show returns as pornography when science and human rights are nuisances.

The Russians are terrific at Kompromat. After viewing “the act” should the news ever get out, the headline would read: “who’s the monster now?”

Blake adds:

“Trump’s visit to The Act was reported in a 2018 book by Michael Isikoff and David Corn, though it didn’t specify what was onstage that night. Cohen has teased his new book by apparently referencing the club visit but referring to another act — one involving urination — that doesn’t appear in the Senate’s report.”

Disabled in the Faculty Ranks, a Tiresome Tale…

If you’re like me and you’ve a disability and you work in higher education you know that discrimination on the basis of physical difference is just as rampant from the left as the right. If you’re a faculty member who requires accommodations in the workplace you’re a nuisance. You might even be an embarrassment. I’ll never forget walking in a faculty procession with my guide dog and actually hearing a university trustee snicker as I passed. The chuckle wasn’t friendly and it spoke volumes. “Look! There goes our esteemed faculty! I always told you they didn’t know anything!” This happened at Syracuse University and yet it could have occurred on any campus. Disabled faculty are not the norm. Worse, we face bureaucratic delay and dismissive arguments when we bring up the inaccessibility of physical and digital spaces.

I submit it’s hard to avoid growing bitter. It’s hard to feel the very apparent lack of interest in disability discrimination even from faculty who hail from other marginalized positions. No one wants to imagine disability as being intersectional. Diversity and inclusion generally doesn’t include the cripples. Because this is so, the loneliness of being disabled in the faculty ranks is considerable. Ableism is a machine for isolation and deprivation. When you say, well people of color also have disabilities people look at their watches. The great liberal fiction is that universities are welcoming. All of this came to the surface for me this morning when I read about two black professors at the University of Virginia who were denied tenure. The academy does not welcome bodies of difference and while I’m not a person of color I can say I’ve seen the discriminatory daily routines “up close and personal” and I’m getting pretty close to being worn out.

Not so long ago I was called an “ignoramus” by a fellow faculty member who was snotty to me and my white cane. I know, it’s hard to believe. Of course It is never appropriate to call anyone an ignoramus in an educational setting for the term’s antonym s are “brain “ and “genius” and its synonyms include: airhead, birdbrain, blockhead, bonehead, bubblehead, chowderhead, chucklehead, clodpoll (or clodpole), clot [British], cluck, clunk, cretin, cuddy (or cuddie) [British dialect], deadhead, dim bulb [slang], dimwit, dip, dodo, dolt, donkey, doofus [slang], dope, dork [slang], dullard, dum-dum, dumbbell, dumbhead, dummkopf, dummy, dunce, dunderhead, fathead, gander, golem, goof, goon, half-wit, hammerhead, hardhead, idiot, imbecile, jackass, know-nothing, knucklehead, lamebrain, loggerhead [chiefly dialect], loon, lump, lunkhead, meathead, mome [archaic], moron, mug [chiefly British], mutt, natural, nimrod [slang], nincompoop, ninny, ninnyhammer, nit [chiefly British], nitwit, noddy, noodle, numskull (or numbskull), oaf, pinhead, prat [British], ratbag [chiefly Australian], saphead, schlub (also shlub) [slang], schnook [slang], simpleton, stock, stupe, stupid, thickhead, turkey, woodenhead, yahoo, yo-yo…

As a disabled person I know full well what the delegitimizing effects of language can do to anyone who hails from a historically marginalized background but where disability is concerned the labeling I’ve described has a particularly specious and ugly history. Idiot, moron, half-wit, dolt, cretin are all familiar to the disabled. One would expect relief from these terms at a university. What’s particularly galling is that the subject I was discussing with the professor in question was ableism—namely that I’d said hello to him on an elevator, I, a blind man with a white cane, and he simply stared at me. No acknowledgement. When two students got on the elevator he lit up and talked breezily about how he hates snow. I followed him to his office and said that by not acknowledging a blind person he creates a social dynamic that feels off-putting and I wanted to discuss the matter. He became instantly contemptuous.

Now of course that’s because of the synonyms above. In this man’s antediluvian world view the disabled really shouldn’t be in the academy. Ableism is not only more pervasive than people generally understand its also more consistent at universities than is commonly recognized.

As for me, I’m an ignorant man to professor “p” for that’s what I’m calling him. “P” for privileged.

He doesn’t know it yet, but incapacities likely await him.

Some day, long after I’m dead colleges and universities will be welcoming places for all. And disabled folks who are people of color will thrive. And yes blind people will not be laughed at.

Disabled in the Faculty Ranks, A Tiresome Tale…

As for me, I’m an ignorant man to professor “p” for that’s what I’m calling him. “P” for privileged.

He doesn’t know it yet, but incapacities likely await him.

Some day, long after I’m dead colleges and universities will be welcoming places for all. And disabled folks who are people of color will thrive. And yes blind people will not be laughed at.

Old White Finn’s Homage to Black Disabled Lives Matter

Some of the most important intersectional human rights work being done in the United States comes from Black Disabled Lives Matter. This work doesn’t have analogies. Strictly speaking it’s not a slogan, only the meretricious and ill conceived parodies (Blue Lives Matter, All Lives Matter) are slogans, for DBLM is proleptic, it materializes objections to disabled black human rights by stating what should be true but isn’t. Blue lives already have the money and power; “all lives” means white able bodied life and we know it has the bacon.

I’m a 65 year old Finnish-American blind writer and activist. I don’t know what it’s like to be black and disabled. As a guide dog user I’ve been prevented from entering public accommodations. I’ve been denied cab rides. When I was unemployed a social worker told me I’d never find another job and I should be content to collect social security disability. I’ve been treated badly by airlines, academics, bus drivers, weirdos on the streets and even once in a church. But no one is generally out to shoot me. And because of my cheerful whiteness I’ve even been approached by cops who wanted to help me. (They thought I was lost. You know all blind people are permanently lost.)

If you’re disabled and black you’re pre-judged by systemic racism and ableism. Disability is cheating. Blackness is nascent criminality. Illness is a civic burden. Added together: the black disabled must be locked away. In public they can be tased, shot, whatever, and before you say, “why is this different from non-disabled people of color” let me add that it isn’t but disabled people of color are imagined by racist and ableist society as not ever belonging in public. They are rolling, tapping, ventilating reminders of all civil rights history. Hence they make even some black people uncomfortable. Kudos to Rev. Al Sharpton for mentioning black disabled lives at George Floyd’s funeral.

One of the best things happening is that Black Lives Matter means black disabled lives matter. BLM is amplifying the voices of black disability activists who have critically important stories to tell. Check out the Black Lives Matter page “Black, Disabled and Proud : College Students with Disabilities: https://www.blackdisabledandproud.org/black-lives-matter.html

There you can read Darnelle Moore’s excellent piece on racism as a mental health trigger. Moore writes about the horror and exhaustion of systemic racism.

Check out the Black Lives Matter Washington Disability Rights page: https://www.disabilityrightswa.org/2020/06/01/black-lives-matter/
Here you can read about BLM and disability rights where policing is concerned:

https://www.disabilityrightspa.org/newsroom/black-lives-matter-justice-in-policing/

If you know your history you’ll remember that the Black Panther Party was a significant promoter of disability rights and inclusion. If you know your history you know that Brown vs. Board of Education opened the doors of public schools for disabled kids like me. The intersections are tight between civil rights movements. But if there’s a moment beyond history—whatever we mean by history in the making—black disabled activists are pushing for true universal rights. They speak for veterans, the elderly, those who steer their chairs with breathing tubes, the guide dog teams, the mentally ill, the homeless, the unemployed, the deaf and non-speaking.

Now being blind I’m terrible at posting videos and I even struggle with pasting links but please check out the work of Vilissa Thompson, LeRoy Moore, and this terrific article published just two days ago at The Guardian; https://www.theguardian.com/commentisfree/2020/jun/09/sandra-bland-eric-garner-freddie-gray-the-toll-of-police-violence-on-disabled-americans

In creative writing circles we’re asked, all of us, the old question, “who are you writing for?” I’ve never known how to answer this. I don’t think I write for blind people only. Certainly not cis gendered white men; not ableist or racist or homophobic types. I think though that today I’m writing for an old friend who is black and trans and has a guide dog.

And yes, nothing here is exhaustive, there’s so much more to be read and said. And yes I’m in total awe of disability activists everywhere.

Mr. President I’m One of Those Who Needs Reassurance

I’m disabled, Mr. President. I work with the disabled. We represent every ethnicity and nationality: we’re old, young, veterans, parents; we’re gay and straight, and yes, we have physical and other limitations that cause us to be medically and socially vulnerable. When yesterday you rebuked NBC reporter Peter Alexander for his “nasty” question about how you might reassure anxious Americans you essentially dismissed the 60 plus million Americans with Disabilities. I think you knew you were doing it.

Not once in any of your press conferences about the novel Coronavirus has the word disability been uttered. Not once. I know why. You think Americans who need “reassurance” are weak. Moreover you think without irony that life is unfair. When asked why star athletes are getting virus tests while ordinary Americans are waiting you told us this is how life in America operates. Reassurance is a pesky word isn’t it? It means to restore people to confidence. What about those of us who’ve never had it in the first place? While you berated Mr. Alexander you were essentially saying America is a cruel craps game and the losers can go to hell.

There was nothing nasty or corrupt about Alexander’s question, Mr. President. Where will the disabled get treatment when the majority of our hospitals and clinics are only conditionally accessible? Where will those who rely on Medicare get help when so many states have been cutting services prior to this health emergency? What is the VA doing to assist wounded warriors who may contract the virus, especially older veterans? I suppose you’d say these are nasty questions too.

When the Nazis came to power Hitler declared the disabled “useless eaters’ and insisted the only valuable citizens in Germany were those who were hail and hearty. That’s an extreme way of saying life is unfair. By showing no empathy toward the most vulnerable in society you’re essentially saying the same thing. No wonder the health experts who stood behind you yesterday looked stricken. No wonder they wanted very clearly to hide their faces. You thought you were demeaning NBC but you were stomping on those who need help the most.

Eye Rolling and Disability, a Brief Explanation

Do the blind have occult powers? I’m not sure generalizations about any group are worthwhile but as a blind man I can hear sighted people roll their eyes at me.

I hear this at least twenty times a day and sometimes the incidents number higher.

When sighted people roll their eyes it makes a sound like the world’s smallest theremin. It’s a squeaky Hollywood monster movie effect almost below the level of human hearing.

In a meeting with colleagues I say: “I need an accessible version of this handout,” and I hear a dozen teensy monster movies around the table. “The Thing” has risen in all those unseeable heads. The blind guy needs access. We don’t feel comfortable. Oooooweeeeeeeoooooo!

In monster movies it’s not the monster himself (herself) who starts the theremin music. It’s the scientist behind the creature.

I like to think of normatively constructed civic life, which is narrow and grudging about disability in public as the scientist behind the creature.

We can call the scientist the social construction of normalcy as we tend to do in the field of Disability Studies. But the invisible hand of normalcy is perverse, phobic, gloating, superior before its private mirror. The cliche we use most often when thinking of social normalcy is “thinking outside the box” and I’m here to tell you that the disabled are always outside the box. This is where all our thinking and working occurs.

The compulsive normals in their invisible lab coats don’t like inconvenience which means anything or anyone that alters their routines. Need a Braille menu? Theremin. Need an accessible website or application? Theremin. Need a functioning wheelchair lift into a university lecture hall. Theremin. Want audio description of a film being shown on your campus. Theremin. Ooooooweeeeeooooo! If you ask for these things you’re the monster. And worse, you’ve gotten loose. Quick! Hide the children!

There’s theremin music in the supermarket. The little child sees the blind person with a cane or dog and says: “Mommy, what’s that?” And mommy replies: “Shhhh! Don’t look!” Cue the scary music.

Meantime I hear the eye rolling everyday. Catch a cab? Squeeee… Boarding an airplane….
Entering the restaurant. Just walking on the ordinary street.

Checking into a hotel.
Attending a sporting event.
Once, when I was entering a major league baseball stadium with my guide dog, a rather drunken woman said loudly to her man, “why would a blind man go to a baseball game?”
Oooooooweeeee….

The disabled ruin the neat social order.

I almost never have a day without the music.

ABOUT: 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

(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.

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

(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

Universal Design and Utopian Insistence

If you’re disabled you must explain yourself always. You’ll never get a medal for this. You’ll say I belong, I participate, I’m equal, though the phrases are gestural, utopian. You might as well say there are mermaids inside the sun.

A poem then:

Five crows in a dream last night
Faces of the old—a woman
Older than iron came near
The skin on her face
Like ice to a pond
But she was speaking
The language of crows
I saw it—the myth
Of speech—
She made no sound at all

I’m up early rummaging. Being disabled is a garage sale of the mind. I’m always moving things around. Seeing if things have more value in different settings. The salt shaker on a window sill feels better than when it was in the corner of a cupboard. Does this have something to do with what they call “universal design”?

Design: from Latin designare—to mark out, point out; devise; choose, designate, appoint. Later in English it comes to mean to form an outline or scheme. It’s a hopeful word if you bleach all the history out of it.

Universal is so hopeful it puts Shirley Temple to shame.

I think we can’t achieve universal design unless we understand what we mean by defect. I am not a defective sighted person. My friend D.J. Savarese is not a defective talking person. My pal William Peace is not a defective walking person though he gets around with a wheelchair.
Until we understand that defect or defective is as unhelpful as the mermaid inside the sun we’ll get nowhere. We will go on designing things that the majority of people cannot use.

The majority of people is a wonderful phrase. Too bad it’s unconnected to reality. It assumes that humans are static. Real people age, go blind, have industrial accidents, become wounded in wars, develop illnesses bases on genetics, have auto accidents, dive head first into shallow ponds, it’s a longer list than we’ve time for.

The majority of people are not defective, they are us.

It’s better I think to say we’re a planet of universal defectives.

Let’s call ourselves unifects.

A poem then:

Letter to Borges from London

When I was a boy I made a beehive
From old letters—dark scraps from a trunk,
Lost loves; assurances from travelers.
It was intricate work.
The blind kid and the worker bee lost whole days.
I made a library for inchworms.

Now I’m a natural philosopher but with the same restless hands.
Some days I put cities together—
Santiago and Carthage;
Toronto and Damascus.
If strangers watch closely, Borges,
They’ll see my fingers working at nothing.

In Hyde Park near the Albert Memorial and alone on a bench
I reconstructed the boroughs of New York—
Brooklyn was at the center, Kyoto in place of Queens.
This was a city of bells and gardens, a town for immigrants.
The old woman passing by saw my hands at work.
She thought I was a lost blind man, a simpleton,
Said, “Poor Dearie!” and gave me a quid.

Excerpt From: Stephen Kuusisto. “Letters to Borges.” Apple Books. https://books.apple.com/us/book/letters-to-borges/id564556086

Now I hate to sound like a high school English teacher but really, which of us is the more disabled in this poem—the blind guy thinking or the old woman?

The blind guy has design. He’s imagining better cities.

The old woman, who we’ll say has a tender heart, believes in the 19th century social construction of disability. In her unexamined view, the disabled belong in special places, are helpless, and need charity.

It’s worth remembering that this 19th century view required a design to begin with.

Here’s some helpful prose from the National Disability Authority in Ireland:

“Universal Design is the design and composition of an environment so that it can be accessed, understood and used to the greatest extent possible by all people regardless of their age, size, ability or disability. An environment (or any building, product, or service in that environment) should be designed to meet the needs of all people who wish to use it. This is not a special requirement, for the benefit of only a minority of the population. It is a fundamental condition of good design. If an environment is accessible, usable, convenient and a pleasure to use, everyone benefits. By considering the diverse needs and abilities of all throughout the design process, universal design creates products, services and environments that meet peoples’ needs. Simply put, universal design is good design.”

This is excellent.

The problem arises, especially in higher educational settings, when people are asked to consider the diverse needs and abilities of students.

University faculty and administrators are not skilled when it comes to thinking about diverse learning styles or needs. In historical terms the university is built on a model of exclusion, a narrow model, one which suggests quite openly that only certain bodies and minds need apply.

Jay Dolmage writes in his wonderful book “Academic Ableism: Disability and Higher Education”:

“Disability has always been constructed as the inverse or opposite of higher education. Or, let me put it differently: higher education has needed to create a series of versions of “lower education” to justify its work and to ground its exceptionalism, and the physical gates and steps trace a long history of exclusion.”

Without universal design in classrooms, curriculum, teaching methods, websites, the university creates a de facto “lower education” system. If the blind student has to struggle to get accessible books; the wheelchair user can’t sit in the front of the room; the autistic student can’t use the proper accommodations for her needs, then the educational system is exclusionary. Let’s be clear: there are some faculty and deans who like it this way, just as they like lots of step steps that mark off the university as a place of climbing and advantage.

Colleges and universities are the least disability friendly places in the United States. The average airport is more accessible and engaged with design.

In order to have universal design in higher ed we must have inclusive education in mind when we teach.

I’m a blind college teacher. There should be nothing remarkable about this. Yet my daily presence haunts the academy. At all three universities where I’ve held tenure I’ve met obstacles to my participation in everything from meetings, classroom teaching, library research, online systems, even simple sporting events. All these basic things have been largely blocked.

Bad as these stumbling blocks are, and I promise you they’re lousy, what’s worse is the extraordinary degree of ableism I’ve met over the course of my roughly thirty year teaching career. Setbacks are one thing, perhaps even to be expected (at least initially) but prejudicial behavior is worse and I’ve experienced it over and over again. I’m a well known blind person. I have managed despite these problems to achieve “senior status”—that necrotic term for full professors.

Yet I’m not a full professor at all. I’m essentially a steerage passenger on a luxury liner, one who has wandered onto the wrong deck. This analogy should be ridiculous but it isn’t.

I’m still waiting for accessible “on boarding” materials at Syracuse University though I came there eight years ago. I asked for them four times. Because I’ve never received them I know less about the place where I work than almost everyone.

Getting accessible research materials in a timely way is grueling and often impossible yet I’m expected to teach as much as anyone else—oh, and also to be a leader in my field.

A colleague criticized me not long ago for speaking out about accessibility problems, saying, “you set back our reputation.”

In the meantime disabled students tell me almost weekly how they’re patronized by faculty and how difficult it is for them to get the help they need to succeed. What do I do? I complain. All too often my reward for speaking “behind the curtain” to multiple administrators about access problems is that I’m essentially conceived of as a malcontent. The eye rolling says it all: I should go back to steerage immediately.

My “non-disabled” faculty colleagues are not generally reliable allies. Even the ones who theorize disability and confront the social and economic history of disablement are seldom on the front lines when it comes to speaking up. Can’t get into the famous basketball arena with your service dog? That’s too bad. We’re all going to the game tonight.

A famous scholar once wrote about the “spoiled identity” the disabled are forced to endure—have been forced to suffer—every day. The word for this is stigma and everyone who hails from a historically marginalized background knows what it feels like. There’s a moue of unhappiness at the sight of you. Many sighted people think the blind don’t know it when it comes but we do.

Lately blind students have been filing civil rights complaints against colleges nationwide. I have not done this because I keep thinking my persistence and whatever in me passes for eloquence will pay off.

But you see, there’s the problem. I want a broad coalition of faculty to speak up.

In order for this to happen we must educate faculty about inclusive education as a human right and underscore the central place of universal design in that expectation.

Why is the rhetoric of diversity and inclusion at universities invariably so wooden and dead one would rather succumb to the prolixity of self help manuals? Give me Leo Buscaglia over prose exhorting the building of individual competencies or better, let’s imagine collective talent and free students (and staff) of the corporatized idee fix of the happy happy individual. If we’re to be honest we should admit universities are competitive and structurally opposed to whatever is meant by inclusion. (I like Paolo Freire’s sense of it, grass roots, promoting literacy for all, but on the American campus the term seems to mean—“tag along” as if we’re all going for a nice walk and you’ve been invited, lucky you.)

Lucky you indeed. It’s estimated that almost three quarters of disabled college students fail to graduate. What was it? The food? Must have been the chow. Yes, inclusion stops at the classroom door; stops at the inaccessible website; stops when the disability services office posits there are just a few hoops you have to jump through to get accommodations and you better follow the procedures exactly or your semester will go down the drain faster than your costume jewelry. Structurally speaking disability is to inclusion as mice are to kitchens.

At most universities and colleges disability isn’t included under the rubric of diversity. As a former administrator once said in my presence: “we don’t want people to know we have learning disabled students, it will affect our rankings.”

Talk about “Typhoid Mary”—disability might be catching! But back to the rhetoric. Consider the following, a fairly typical “letter” which a prospective college student must give to a physician in order to receive accommodations on campus:

Please provide the following information under separate cover and on practice letterhead. The authorized release of information is to include but not be limited to the following:

1. Presenting diagnosis(es) utilizing diagnostic categorization or classification of the ICD or DSM IV. Diagnoses should indicate primary, secondary, etc., and significant findings, particularly in respect to presenting problems.
2. Date the examination/assessment/evaluation was performed for the presenting diagnosis, or if following the student for an extended time, date of onset and date of an evaluation of the condition that is recent enough to demonstrate the student’s current level of functioning.
3. Tests, methodology used to determine disability. PLEASE do not send copies of the student’s medical records.
4. Identify the current functional impact on the student’s physical, perceptual and cognitive performance in activities such as mobility, self-care, note taking, laboratory assignment, testing/examinations, housing conditions/arrangements. Is this condition temporary? If temporary, what is the expected length of time to recovery?
5. Describe any treatments, medications, assistive devices/services the student is currently using. Note their effectiveness and any side effects that may impact the student’s physical, perceptual or cognitive performance.
6. Recommendations for accommodations. Explain the relationship between the student’s functional limitations and the recommendations.
7. Credentials (certification, licensure and/or training) of the diagnosing professional(s).

This information is kept confidential except as required by law.

Again, the prose above is standard boilerplate. It’s what’s for breakfast. If you have a disability and want to go to college you’ll need to be medicalized and sanitized. This is what passes for accommodation language at matriculation for most university students. Get a doctor or a psychologist to affirm you are indeed disabled—moreover, ask a medical professional to articulate “for you” what you will need in order to succeed in higher education. The falsity of the claim—that a standard MD or Ph.D. knows much about disability and it’s circumstances is nearly laughable but not quite. Inclusion is in the balance. Let’s see your disability certificate kid. Let’s see what it says we “have to” do for you. Do you feel included? What’s that? Not quite? Perhaps you have a bad attitude.

A campus that’s inclusive is accommodating because it’s classrooms, it’s digital domains, it’s syllabi, it’s assignments, it’s library, all are “beyond compliance”—which in turn means no one should need a letter from a doctor or a specialized office with its reliance on “treatments” and “functional impacts” and “cognitive performance” and the like. This language by its very nature is not inclusive nor is it meant to be—it’s designed to weed out students who might be tempted to fake a disability, because lord knows, maybe extra time when taking a test will give certain underachievers an advantage. I know of no other area of diversity where one’s provenance and authenticity must be vetted and confirmed.

Back to universal design— from the National Disability Authority in Ireland
it is:

The design and composition of an environment so that it may be accessed, understood and used
To the greatest possible extent
In the most independent and natural manner possible
In the widest possible range of situations
Without the need for adaptation, modification, assistive devices or specialised solutions, by any persons of any age or size or having any particular physical, sensory, mental health or intellectual ability or disability, and
Means, in relation to electronic systems, any electronics-based process of creating products, services or systems so that they may be used by any person.

Universal Design should incorporate a two level approach:

User-Aware Design: pushing the boundaries of ‘mainstream’ products, services and environments to include as many people as possible.
Customisable Design: design to minimise the difficulties of adaptation to particular users.

Viewing Universal Design at the Micro Level

A single design feature or a simple product, designed so that it can be used by as many people as possible.

At this level, the designer is not expected to find one design solution that accommodates the needs of 100% of the population, as Universal Design is not one size fits all. Rather, designers are urged to explore design solutions that are more inclusive; those designs that push the boundaries as far out as possible without compromising the integrity or quality of the product.

If more than one option is available for a design feature, choose the more inclusive feature. For example, when installing a handle on a door, it is always better to opt for a lever handle, rather than a door knob, as the lever handle can be opened using the elbow or a closed fist, benefiting people carrying shopping bags as well as people with limited strength in their hands.

Viewing Universal Design at the Macro Level

At this level the designer has the opportunity to combine accessible and usable design features, with customisable or adaptable features, alongside more specialised design solutions that deal with the most extreme usability issues (see levels 1-3 above).

By stepping back from the individual features and looking at the product, service or environment as a whole, designers are in a position to investigate alternatives providing equivalent experiences to users.

Examples include a user-friendly website that meets web accessibility initiative’s (wai) web content accessibility guidelines 2.0 (wcag 2.0), has a customisable user interface, and is compatible with assistive technologies.

From micro to macro, Universal Design has implications for the design of any single feature of a product, service or environment, as well as the design of that product, service or environment as a whole.

The 7 Principles of Universal Design were developed in 1997 by a working group of architects, product designers, engineers and environmental design researchers, led by the late Ronald Mace in the North Carolina State University.The purpose of the Principles is to guide the design of environments, products and communications. According to the Center for Universal Design in NCSU, the Principles “may be applied to evaluate existing designs, guide the design process and educate both designers and consumers about the characteristics of more usable products and environments.”
Principle 1: Equitable Use
Principle 2: Flexibility in Use
Principle 3: Simple and Intuitive Use
Principle 4: Perceptible Information
Principle 5: Tolerance for Error
Principle 6: Low Physical Effort
Principle 7: Size and Space for Approach and Use

The issue of inclusion for people with disabilities in higher ed is a matter of culture: far too many colleges and universities fail to imagine that people with disabilities represent a cultural movement. (Let’s leave aside for the moment the powerful statistical urgencies represented by the finding that nearly 10 per cent of matriculating freshmen are self-identifying as having a disability.)

A cultural understanding of disability means at its very core that students or staff with disabilities are our children, our sisters, daughters, sons, fathers and mothers, our veterans, our colleagues. But it means more than that: an academic or curricular awareness of disability means that our nation’s institutions of higher learning will finally sense that what they “do” they do for all and with no oppositional and expensive and demeaning hand wringing. Such a position requires that disability services and academic culture–matters of curricular planning and cultural diversity be wedded as they should be.

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

(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