inclusion – Planet of the Blind

Thirty for Thirty on the ADA: A Largely Lonely Triumph: Disability and Contemporary Higher Education

As we near the thirtieth anniversary of the Americans with Disabilities Act I’ve decided to post thirty short essays about the law, the anniversary, and the cultural impact of #ADA @30. I’m doing this as a disabled person who’s lived half his life before the ADA. I’m reflecting on the “before and after” of the law.

Essay Six: “A Largely Lonely Triumph: Disability and Contemporary Higher Education”

I have lately been reading “Helen Keller: A Life” by Dorothy Herrmann. The following passage jumped out at me:

“It was largely a lonely triumph. As the twenty-year-old Helen soon discovered, college was not the “romantic lyceum” that she had envisioned. At Radcliffe, which had been forced to accept her as a student, she was more profoundly aware than ever before of her blindness and deafness. Only one of her classmates knew the manual finger language. Another girl had learned to write Braille, copying as a present Elizabeth Barrett Browning’s Sonnets from the Portuguese, but Helen never heard from her after graduation. The other students tried to be friendly whenever they saw her at a local lunchroom, and according to Helen, “Miss Sullivan spelled their bright chatter into my hand.” But she was painfully aware of the gulf between them, even though her classmates tried to bridge the gap by such lavish, awkward gestures as buying her a Boston terrier, which she promptly named Phiz. Presumably the dog would compensate her for what they were either too timid or too busy to give and what she secretly longed for: “the warm, living touch of a friendly hand.”

And here’s another revealing passage:

“Of Helen’s professors, only one, William Allan Neilson, who later became the president of Smith College, took the time to master the manual finger language so he could communicate directly with her. As Arthur Gilman was closely associated with the college, she and Annie were politely ignored by the rest of the faculty and administration, including the autocratic Agnes Irwin, the dean of Radcliffe, and the august Dr. Charles W. Eliot, the head of Harvard.

The snub did not surprise Annie, who was still furious about the plot at the Cambridge School to separate her from Helen. “I would much prefer to have people despise me as they certainly would if they guessed how full of distrust and contempt my heart is towards my fellow beings,” she wrote to Hitz. “I know it pains you to hear me speak in this way and doubtless it will hurt you still more to have me write it: but I want you to know just how detestable I am. I find people hateful and I hate them. Mr. Gilman seemed to me a fair specimen of our noble race. . . .”

“Radcliffe did not desire Helen Keller as a student,” Dean Irwin later explained to an interviewer. “It was necessary that all instruction should reach her through Miss Sullivan, and this necessity presented difficulties. They were overcome and all went well if not easily.”

Helen was wounded whenever her classmates passed her on the stairs and in the lecture halls without a sign of acknowledgment. Most of her teachers were “impersonal as Victrolas,” she recollected years later, and “the professor is as remote as if he were talking through a telephone.”

I have a recurring sense that the realities of campus life for people with disabilities may not have changed much when it comes to what we nowadays call “inclusiveness” in higher education. We have laws of course, and assistive technologies, and surely we do better at providing reading materials in alternative formats. Yet for all that I think that at far too many colleges and universities in these United States one will find that where disability is concerned the faculty and administrators are still “impersonal as Victrolas”. One need only visit the web site LD Online for an overview of the struggles that students with learning disabilities have faced and continue to face as they struggle to gain accommodations in the classroom. Or one can visit the U.S. Department of Justice page and see findings against American colleges and universities. See in particular Duke University but also Chatham University or University of Michigan or Swarthmore College or Colorado College or Millikin University or University of Chicago–each of these cases of discrimination against students or staff with disabilities is fairly representative of the landscape in post-secondary education–what we might call the “Autocracy of the Victrola” if you will. And if you believe (as I surely do) that these problems start earlier, you can visit the DOJ’s web pages on school district discrimination settlements.

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.

In the meantime there are autocratic talking machines aplenty. One senses their steady banishment to the attics of history. Those of us who labor in higher education should do all we can to grease the skids.

The noted scholar of disability studies Lennard Davis writes in his book Bending Over Backwards a trenchant overview of the academic relativism that consigns disability to Diversity’s basement and argues for the critical importance of disability studies in higher education:

“The fact is that disability disturbs people who think of themselves as nondisabled. While most liberals and progressives would charitably toss a moral coin in the direction of the lame, the blind, or the halt, few have thought about the oppression committed in the name of upholding the concept of being “normal.” Consequently, one of the major tasks of this new field is to determine why this “fact” of disturbance exists, is accepted, and is promulgated. Disability scholars want to examine the constructed nature of concepts like “normalcy” and to defamiliarize them. David Pfeiffer writes that “normal behavior is a statistical artifact which encourages people with power and resources to label people without power and resources as abnormal.”’° Rosemarie Garland Thomson coins the term “normate” to make us think twice about using the term normal: “The term normate usefully designates the social figure through which people can represent themselves as definitive human beings. Normate, then, is the constructed identity of those who, by way of the bodily configurations and cultural capital they assume, can step into a position of authority and wield the power it grants them.”’

Normates thus enforce their supposed normality by upholding some impossible standard to which all bodies must adhere. To further demystify such terms, disability activists have called attention to the routine ways in which language is used to describe people with disabilities. Such activists refer to themselves as “crips,” as in the video documentary by David Mitchell and Sharon Snyder called Vital Signs: Crip Culture Talks Back, and choose words like gimp, geek, deaf and blind over more polite euphemisms. Expressions like “confined to a wheelchair” are being replaced by the more active “wheelchair user.” And expressions that use impairments metaphorically to convey a negative sense–such as “a lame idea,” “turn a deaf ear,” or “morally blind”–are being seen as the equivalent of racial epithets. This obsession with being normal has a history, as I attempt to show in my book Enforcing Normalcy)2 The use of the word normal in reference to physical bodies appeared in English merely one hundred fifty years ago, coinciding with the birth of statistics and eugenics. Before the nineteenth century in Western culture the concept of the “ideal” was the regnant paradigm in relation to bodies, and so all bodies were less than ideal. The introduction of the concept of normality, however, created an imperative to be normal, as the eugenics movement proved by enshrining the bell curve (also known as the “normal curve”) as the umbrella under whose demanding peak we should all stand. With the introduction of the bell curve came the notion of “abnormal” bodies. And the rest is history, including the Nazis’ willing adoption of the state-of-the-art eugenics funded and developed by British and American scientists, as Martin Pernick points out in The Black Stork.13 The devastating result was the creation of procedures for exterminating deaf and disabled people, procedures which were later used on the Jews, gypsies, and other “degenerate” races. But the Nazis were only the most visible (and reviled) tip of an iceberg that continues quite effectively to drive humans into daily frenzies of consuming, reading, viewing, exercising, testing, dieting, and so on–all in pursuit of the ultimate goal of being considered normal.

Disability studies demands a shift from the ideology of normalcy, from the rule and hegemony of normates, to a vision of the body as changeable, unperfectable, unruly, and untidy. Philosopher Susan Wendell sounds a clarion call that in the end provides a rationale for the disability perspective: “Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal’ and sane …. If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.”4″
–from Bending Over Backwards by Lennard J. Davis, New York University Press, p. 24

We can argue that “the body normal” is still culturally of considerable importance in administrative circles within American higher education. That disability clouds the picture is entirely understandable. Disfigurement is a terribly problematic matter if the goal on campus is simply to look good (whatever your social background).
Academic accommodations for learning disabilities, special provisions for assistive technologies or note taking or the like are still, to this very day, unconsciously imagined by many administrators and faculty as being somehow a matter of cheating the system.

That accessible facilities are not part of the cultural capital of Normates should not be surprising given the historical exclusivity of higher education. But that the problem of ADA compliance remains IS surprising especially in a time when we are seeing wounded veterans returning to colleges and universities in the greatest numbers since the years following World War II. Clearly its time for the Department of Justice to demand compliance with the ADA in higher education. And its time for regents, trustees, college presidents, and faculty senates to demand that their campuses be audited for accessibility and adopt serious plans for reaching accessibility goals.
The final question and perhaps the most important one is to ask how a college or university can be culturally inclusive for people with disabilities, a matter that if answered properly will take away the embarrassment and distress of having to ask for simple acceptance within the academic community.

Thirty for Thirty on the ADA

Essay 1:

“Bicycle-Blind & Belabored”

In the mid 1990’s just three years after the adoption of the ADA I decided to write a memoir about growing up blind before I had any rights. Nonfiction was suddenly all the rage. The critical and commercial success of books like The Liars Club and Angela’s Ashes brought the memoir to the public’s attention. Where formerly “the memoir” had been the metier of statesmen or Hollywood has beens (I exaggerate only slightly) young writers were sharing stories about achieving self-awareness. The memoir was now about comic irony. Everyone could have his or her own bildungsroman and it was refreshing and by God there was a new law for cripples and overnight we had the public’s eye in new ways. Lucy Greeley’s Autobiography of a Face was brand new as I began my first book, Planet of the Blind. Memoir was fresh; the ADA was new; disabled writers had a chance.

Literature aside this is what the ADA means: the disabled getting their chance. (A joke I love says we call the United States “the melting pot” because scum rises to the top while the people on the bottom get burned.) The disabled were always on the bottom, a fact made all the worse if they were poor, black, or if they were crippled women. America had always believed cripples belonged in asylums, “special” schools, that room behind the family garage—anyplace but the village square. In her groundbreaking 1998 book Claiming Disability Simi Linton presented a new vision of the Parthenon marbles, a bas relief for what the ADA meant and means:

We have come out not with brown woolen lap robes over our withered legs or dark glasses over our pale eyes but in shorts and sandals, in overalls and business suits, dressed for play and work — straightforward, unmasked, and unapologetic. We are, as Crosby, Stills, and Nash told their Woodstock audience, letting our “freak flag fly.” And we are not only the high-toned wheelchair athletes seen in recent television ads but the gangly, pudgy, lumpy, and bumpy of us, declaring that shame will no longer structure our wardrobe or our discourse. We are everywhere these days, wheeling and loping down the street, tapping our canes, sucking on our breathing tubes, following our guide dogs, puffing and sipping on the mouth sticks that propel our motorized chairs. We may drool, hear voices, speak in staccato syllables, wear catheters to collect our urine, or live with a compromised immune system. We are all bound together, not by this list of our collective symptoms but by the social and political circumstances that have forged us as a group. We have found one another and found a voice to express not despair at our fate but outrage at our social positioning. Our symptoms, though sometimes painful, scary, unpleasant, or difficult to manage, are nevertheless part of the dailiness of life. They exist and have existed in all communities throughout time. What we rail against are the strategies used to deprive us of rights, opportunity, and the pursuit of pleasure.

It was a dazzling party. Even if disability scholars and writers didn’t quite know each other in the last moments before the world wide web, the ADA had sprung us; provided us with optimism; it gave us what Linton calls the dailiness of life. And along with that came stories. I wrote about being lonesome as a boy, about the hardships of blindness and the static miseries of shame. I described my mother’s terror of disability and how she pushed me to pretend to be normal—a story which is legion among the disabled and is all too often prevalent among people like me who are legally blind. We can’t see well enough to read books, recognize people, read signs—we see like abstract painters. My mother wanted me to go to a public school, not the dreaded school for the blind, and she pushed me into a very unfriendly world always demanding that I never reveal how blind I really was. That was life pre-ADA. Pre-inclusive education. No one in my parents’ circle believed the disabled could pursue pleasure unless they appeared normal. One of the first passages I wrote in Planet of the Blind was a memory about riding a bicycle in early childhood:

I would conquer space by hurtling through it. I wore telescopic glasses, suffered from crushing headaches, but still chose to ride a bicycle—with nothing more than adrenaline for assurance.

How do you ride a bicycle when you can’t see? You hold your head like a stiff flower and tilt toward the light. You think not at all about your chances—the sheer physicality of gutters and pavements. One submits to Holy Rule and spins ahead.

Picture this: A darkness rises. Is it a tree or a shadow? A shadow or a truck? The thrill of the high wire is the greatest wonder of the brain. There is, at the center of our skulls, a terrible glittering, a requiem light. I lower my face to the cold handlebars and decide it’s a shadow, a hole in sunlight, and pedal straight through.

Here’s another shadow, and another. I turn sharply but this time plunge into tall weeds. Insects rise into my hair, cling to my sweaty face. From the road comes the hiss of angered gravel, a car roars past. Thanks be to God! I’m alive in the wild carrot leaf!

I let a bee walk along my wrist, feel it browse on my perspiration. The bicycle coasts, and I squint in the glare, and then I hit a root. As I fall, I take the sting of bee, then the sting of cement. My glasses fly off. The only thing I wonder is whether I’ve been seen. Nothing with this boy must be amiss! He belongs on the street!

Now I’m on my knees groping for the glasses. My wrist has swollen. One wheel is still spinning. I’ve barely struck the ground, and my fingers are everywhere. I must find the glasses before anyone sees me. No one must know how evanescent is my seeing. No one must know how dangerous my cycling really is.

In summary, if I didn’t look normal, if I wasn’t successful in the attempt, then putative strangers would come and take me to the “blind school”—my mother made certain I understood this. She passed her fears down to her altogether trusting little boy.

Pre-ADA was about ugly charades, the “on fire” agonies, the humiliations of passing. God help you if you couldn’t. There would be no public square for you. By this I mean available, open, admissible space. If you were crippled on the street you were subject to cruelty. If you were crippled at the university they’d be sure to tell you to leave.

As late as 1985—yes, believe it—just five years before ADA, I was told by a graduate professor that if I was blind I shouldn’t be in his class. This was at the University of Iowa. That’s pre-ADA in a nutshell. I went to the department chair—he called me a whiner; I went to the Dean, he looked at his watch; I went to the university’s “ombudsmen” (quite a feat since his office was incredibly well hidden) and he also looked at his watch; I talked to the moribund and ineffectual disability support office—they said, the best we can do is give you a note that says you can have more time for exams. The demeaning, bigoted, ableist hostility was untouchable.

I left without my Ph.D. I already had a graduate degree in poetry writing. I packed up. Pre-ADA there was no recourse. If they told you to get lost, well, you didn’t have ammo to fight with.

Those who say the ADA has’t done enough for the disabled are not wrong. And there are still professors everywhere like the late Dr. Sherman Paul who treated me with unspeakable disdain. But post-ADA you can fight back. Post-ADA there are consequences provided you’re willing to snarl and push. There’s still a boatload of ableism around. It may even be fashionable with some. But ableism is long past its sell date and it smells funny—by which I mean you can’t hide it anymore.

I know the ADA hasn’t created lots of jobs and I know it hasn’t changed every mind. Even now the Chamber of Commerce still fights disability rights. Last year with the Chamber’s help Domino’s Pizza tried to say the blind don’t have the right to use their websites—they lost in court—but you see how it goes.

No one should have to risk death to prove he or she or they belong on the street as I had to so long ago. The ADA has driven a stake through that monster’s heart.

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

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.

Civil Rights for People with Disabilities vs. “The Usual Suspects”

Right now, even as we drink our coffee there are powerful forces working overtime on Capitol Hill. I like to call these forces “the usual suspects” because I love the old TV series “Dragnet” and also because it takes too long to type all the acronyms of the various business and human resources lobbying groups that have assembled to fight the “ADA Restoration Act”. Oh yes, and there are prominent corporations opposed to the full inclusion of people with disabilities in the workforce.

The Usual Suspects are opposed to the legislation because it would require that employers actually make reasonable accommodations for employees who have disabilities—rather than allowing said Usual Suspects to proclaim that these accommodations are wildly unreasonable. Why, By Golly! even reassigning a disabled employee to a different but equal job is an undue burden on said Usual Suspect. Enter the extraordinary, well funded, hence powerful Allied Usual Suspects who are working like junior attorneys to “mark up” the bill.

Their aim? To do to the “ADA Restoration Act” what the Supreme Court has done to the original ADA of 1990. In decision after decision the Supreme Court has exonerated employers from having to make workplace accommodations for disabled employees. The court has used a cynical loophole when deciding “for” employers against disabled workers: they’ve argued that Congress, in adopting the ADA has assumed the power to regulate commerce within the respective U.S. states—in effect the conservative majority on the court has asserted that Congress doesn’t have the authority to legislate civil rights for people with disabilities—and by extension, for any other group.

What’s the final final rationale for such a position? Why by God if you give one disabled employee an accommodation well then, by God you’ll have to give all the differently abled people accommodations and heck, that would mean living up to occupational safety and human rights standards and that’s an undue burden on capitalism which, it turns out, doesn’t always see the opportunities for new markets.

So what you do is declare the authority of Congress null and void. You do it by the process of red herring-ism, you confuse the public that the issue is about disabled people in the workplace who are always a suspect group in the view of the general public—aren’t these people faking something? Trying to get an advantage with a better parking space?

If Americans don’t demand of their Congress true accountability on behalf of our nation’s disabled citizens then they are in effect giving away the last measure of our civil rights—the stakes in this argument are really that important.

Write to your Congressman or Congresswoman; take a stand. Don’t let the “usual suspects” continue to evade social responsibility by means of obfuscation.

S.K.

LINKS:

"Permanent Link to ADA Restoration Act Blogging Round-Up, Feb 11-28 ‘08"