The ADA @ 30: “Nightmare”

I had a nightmare last night. What does this have to do with the ADA @ 30? The dream was “noir verite”—I was in a university environment and unable to use crucial websites, read documents, fill out forms. As a blind citizen these experiences of digital exclusion have been customary and continue to be so.  

This morning I tried to use Submittable to endorse applications and discovered, you bet, that the platform is only conditionally accessible for the blind, though their website trumpets their commitment to disability. They’ve a long way to go. Typically the sighted put up these statements. I’ve heard it before. “Our program is “robust” when it comes to accessibility!” When you try it you discover almost everything in it doesn’t work with screen readers. 

Was my dream a harbinger as in Shakespeare? No, it was reality drilling down into the tissues of my unconscious repression. Somewhere in the middle of the thing I shouted at administrators who rolled their eyes at my disclosure of inaccessible websites. The dream made them into department store mannequins. I told them to get their act together. Told them the ADA is 30. 

In Digital Land accessibility is an afterthought. Universities and colleges don’t generally pay attention to the matter. Neither do the vendors. There’s a whole platoon of designers and digital CEOs who proclaim accessibility when in fact they’ve never consulted the disabled end users who need it. 

In the dream I was in pain. Then I woke, went to Submittable, and discovered it wasn’t a dream at all. 

The ADA @ 30 is still a work in progress. Can we say the ADA has been two steps forward, one step back? I think so. At least accessibility is possible. When blind activists fight in the courts outfits like Scribd are forced to retrofit their services so the blind can use them, even though they don’t like it. 

Truth is, the disabled have to fight like hell. 

Consider the collective beating the disabled are taking during the current pandemic. As Andrew Pulrang writes: “Disabled people know better than most that in a crisis, in times of confusion, fear, and deprivation, rules and norms meant to protect us can disappear like wisps of smoke.” In the stertorous and ugly national conversations about the pandemic the disabled are often depicted as a necessary sacrifice. In her article “Disabled People Are Not Simply Disposable” Liz Moore writes: 

Charis Hill, a professional disabled writer, speaker and model, echoed these concerns in a recent piece they wrote: “Plans and public messaging are drafted with only healthy people in mind as the audience, as if no one listening will be ‘those in poor health’ — and if they are, well, someone else will handle that, and it’s OK if they die.”

The ADA @ 30 can’t fully protect the disabled from the underlying principles of utilitarianism, social darwinism, and the ghost of eugenics. 

So I had a nightmare. 

The ADA @ 30: “Pollux and Castor”

I want you to help me. I don’t want your help. The push-pull of disability, the Pollux and Castor, a civic constellation. “Help me,” doesn’t mean we need you able bodied citizens to become Boy Scouts who escort us across streets; doesn’t mean “pity us” or by turns imagining we’re somehow inspiring. Thirty years after the ADA “help me” means picturing new ways of doing things. It also means accommodations for the disabled are reasonable so let’s stop pretending otherwise. 

“Who pretends otherwise?” Why would anyone be opposed to providing the disabled with reasonable accommodations? What is a reasonable accommodation? Let’s look:

Title I of the Americans with Disabilities Act of 1990 (the “ADA”)(1) requires an employer(2) to provide reasonable accommodation to qualified individuals with disabilities who are employees or applicants for employment, unless to do so would cause undue hardship. “In general, an accommodation is any change in the work environment or in the way things are customarily done that enables an individual with a disability to enjoy equal employment opportunities.”(3)

See: https://www.eeoc.gov/laws/guidance/enforcement-guidance-reasonable-accommodation-and-undue-hardship-under-ada#intro

Perhaps no bigger transformation in the lives of the disabled has ever happened. The very idea that it’s reasonable to modify basic workaday structures and appurtenances was radical and remains so. Few people understand that disability is a product of the industrial revolution with its vast reorganization of labor. The advent of dark Satanic mills lead to the valuation of labor ready bodies. The factories of the 19th century redefined the value of bodies just as they exacted standards of physicality. What’s the Castor to the factory’s Pollux? The asylum. The disabled were stripped of civic and economic value in the early 19th century. Rather than modifying the work environment why not warehouse those with physical or neurological differences? 

We shouldn’t forget what a radical concept “reasonable accommodation” truly is. It is reasonable to provide the blind with Braille signage or technical adaptations. It’s reasonable to provide a bank clerk with lupus a tall stool to sit on and modified work breaks. Reasonable to provide deaf employees with supportive technology. The provision of these things does not induce undue hardship. They’re not expensive. As a blind employee I can’t demand my own jacuzzi on the roof. I can ask for a talking computer. 

I say that reasonable accommodations are revolutionary and they’re the antidote to pity. 

This begs the question “why would any employer fight reasonable accommodations?”

Consider most recently the story of Dominos Pizza which cried foul when a blind customer demanded that their website and phone app be usable by those with vision impairments. I want to streamline this: the blind use screen reading software to access digital sites. In turn websites need to be written with the proper coding to allow the computer or phone to talk. This is really simple. I kid you not. Making an app or website accessible to the blind costs next to nothing. 

Dominos took their umbrage and hostility all the way to the US Supreme Court. They lost. Turns out even the pro-business Supremes saw through the ruse: Dominos website is in fact a public space and most therefore be accessible. Moreover, Domino’s spent more money fighting the blind than they’d ever have spent making their website and app friendly for the blind, Reasonable means reasonable. 

When a business fights the ADA its resistance generally speaks to why the law had to be adopted in the first place. In shorthand: it’s easy to include the disabled in the workplace. It’s inconvenient for some to have to think about it. Reasonable accommodations are not inconvenient, They do require imagination. I know of an agricultural studies  student who used a wheelchair. Her university easily modified a tractor so she could ride it. With imagination and a can do spirit you can do almost anything where disability is concerned. And yes,  the tractor modification was cheap. 

Another way to put this is I don’t need help crossing the street. I do need help using your bank machine if it’s  not blind friendly. Only unimaginative built environments trigger my need for assistance. I don’t want your help. I want to use the damn device. 

Dominos argued that the blind could call up their stores and have staff read them the menu options. Imagine that. Why does the app exist? So you can do it yourself. I’ll just say that if you call a Domino’s, tell then you’re blind, and ask them to read their entire menu and the prices they’ll hang up on you.  

The ADA @ 30: “The Happenstance Blues”

So forgive me for starting with a grayness but as I recently joked with a paralyzed friend, “I feel like a battered old fish with many dents in his flesh”—the context—that it’s not probable I’ll see the advances I’d hoped for when the Americans with Disabilities Act was enacted over a quarter century ago. I’m old enough to be feeling what academics call accidie, a weariness, and if I’m not defeated I’m suspicious. 

Shorthand: we haven’t gotten far enough, and daily the news is incontestable. The “fish conceit” is what can happen to believers and how not to become the fish is the story (mine and yours) since disability bias surrounds us. (Bias is a story with many chapters like Bocaccio and knowing it never renders comfort, though if you’re a bigot you may enjoy schadenfreude. I once had an “iffy” friend who practiced “vengeance fantasy”—as he said, seeing his enemies staked out in the Colosseum with lions chewing at their entrails, etc. He’d rub his hands and imitate Charles Laughton: “how do you like your God now, Christian?”)

Bias is a variorum edition. My spotty pal really meant what he said—if he’d had his way he’d have fried you in oil. Everyone has his own grayness. Discrimination, personified, wants us to join the Centurions, at least inside, and its first sign is indifference. In my experience street theater is one way to resist it. 

Thirty years ago when I was a Fulbright Scholar in Helsinki, Finland I went one night to a gritty, working class bar where I was accosted by a wildly drunken laborer. Everyone was painfully drunk–that manly near death atavistic Viking berserk hallucination of everything, and I thought: “all these years, so many wounds, so few praises.” That was when a man I did not know turned to me and said: “You are a Jew!” “You’re right,” I said, since I was young and in love with poetry, “I am a Jew!” It was the first time I’d ever felt the pins of anti-Semitism, I, a Lutheran with a long beard. He reached for me then but missed and grabbed another man. “You are a Jew!” he shouted. “No, it is I,” I said, “I am the Jew!” But it was too late. They were on the floor and cursing, two men who had forgotten the oldest notion of them all: in Jewish history there are no coincidences.

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

Once while I was teaching at The Ohio State University I was invited to a meeting with a dozen faculty and former astronaut and Senator John Glenn. We discussed the future of digital teaching. Afterwards I boarded a Columbus City bus only to face a woman who loudly asked if she “could pray for me”. She assumed blindness was a sad matter—or worse—a sign I needed spiritual rescue. My guide dog shook his collar. Suddenly I felt wickedly improvisational. I stood up, grabbed the overhead pedestrian bar, and announced loudly so every passenger could hear: “Certainly Madame you may pray for me, but only if I can pray for you, and in turn pray for all the sad souls on this bus—souls buttressed on all sides by tragedies and losses, by DNA and misadventures in capitalism, for we’re all sorrowing Madame, we’re all chaff blown by the cruel winds of post-modernism. Let us pray, now, together; let’s all hold hands!” She fled the bus at the next stop. Strangers applauded. 

Improvisation allows us to force the speed of associational changes, transforming the customs of disability life. Disability Studies scholar Petra Kuppers writes: If the relations between embodiment and meaning become unstable, the unknown can emerge not as site of negativity but as the launch pad for new explorations. By exciting curiosities, by destabilizing the visual as conventionalized primary access to knowledge, and by creating desires for new constellations of body practice, these disability performances can attempt to move beyond the known into the realm of bodies as generators of positive difference. 

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

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

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

Now back to my happenstance blues…

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

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

What interests me is how my happenstance-disability-blues are exacerbated by neoliberal capital accumulation. For accumulation one must thing of withholding money from the public good or dispossession, which is of course how neoliberal capital works.  

Here is geographer David Harvey in an interview, talking about just this:

Accumulation by dispossession is about dispossessing somebody of their assets or their rights. Traditionally there have been rights which have common property, and one of the ways in which you take these away is by privatizing them. We’ve seen moves in recent years to privatize water. Traditionally, everybody had had access to water, and [when] it gets privatized, you have to pay for it. We’ve seen the privatization of a lot of education by the defunding of the public sector, and so more and more people have to turn to the private sector. We’ve seen the same thing in health care.What we’re talking about here is the taking away of universal rights, and the privatization of them, so it [becomes] your particular responsibility, rather than the responsibility of the state. One of the proposals which we now have is the privatization of Social Security. Social Security may not be that generous, but it’s universal and everybody has part of it. What we are now saying is, “That shouldn’t be; it should be privatized,” which, of course, means that people will then have to invest in their own pension funds, which means more money goes to Wall Street. So this is what I call privatization by dispossession in our particular circumstance.

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

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

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

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

I also wrote:

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

I concluded:

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

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

Just as accumulation by dispossession involves the creation of labor-free territories, local dispossession requires the devaluation of the individual.

If nothing else, the ADA @ 30 says the cripples have value. 

The ADA @ 30: Thinking of Rousseau

Jean Jacques Rousseau had a dog named Sultan who accompanied him to England when his life was threatened in France. Poor broken Rousseau with his malformed urinary tract, cloying hypochondria and hot paranoia–also poor in cash, resolutely poor in friendships. Sometimes we think we understand him–we, the descendant cripples–those who spent fortnights alone in childhood and more than once. We who occupied our attentions with flowers and seeds. Rousseau had the triple whammy: his mother died when he was very young, then his father ran away. He was forced to learn the baleful adolescent art of beseeching strangers for protection and love. He was easily tricked into churches and bedrooms. And he was easily discarded. The cripples understand this.

No wonder he discarded neo-classicism for what others would call the romantic. No wonder Shelley and Byron adored him–passions of betrayal and resolution always feel the most authentic. Rousseau’s enemies substituted “savage” for “authentic” and prided themselves for calling him “uppity” which is of course what is generally done to passionate cripples. Small wonder Rousseau took up the matter of social consent among the governed.

Sultan lead him into the English countryside where he seldom encountered another soul. I love knowing this. A dog can stir and extend solitary human concentration which is the reward of stigma, but you must understand it in a canine manner–pay attention to what’s here and here; not yesterday; never tomorrow; and yes, a dog looks the other way when you take from your pocket a handful of French seeds and push them into British soil.

What does Rousseau’s depression and malformed urinary tract have to do with the Americans with Disabilities Act? We’re in a mood of celebration! We can do both. Consider the opening to Rousseau’s Reveries of the Solitary Walker which is in fact one of the first disability memoirs: 

“So here I am, all alone on this earth, with no brother, neighbour, or friend, and no company but my own. The most sociable and loving of human beings has by common consent been banished by the rest of society. In the refinement of their hatred they have continued to seek out the cruellest forms of torture for my sensitive soul, and they have brutally severed all the ties which bound me to them. ”

He was in fact disabled by malformations of his nether parts and he had profound depression. Being a liminal figure owing to these conditions he was caste out by the congealing engines of 18th century normalcies. On this the aristocrats and the bourgeoisie could agree—the salon, the atelier, the coffee houses were not places to be troubled by the inconveniences of broken embodiments. Having a troubled body meant staying away—meant the asylums and hospitals. It meant living in  the poor houses.  Good bodies meant public bodies. Rousseau’s solitary journeying on foot is disability journeying. He was Basho, a travel weary skeleton. 

Poor Roussea! He had inherited disorders, porphyria which lead to abdominal pain and vomiting; acute neuropathy, muscle weakness and seizures; hallucinations, anxiety, paranoia—and as if these weren’t enough he had cardiac arrhythmias.  He was by turns aggressive, provocative, contrarian, and yes, he was always ill. 

Today in the disability arts community we talk of disablement as epistemology. We know that altered physicality and neurodiversity offer unique and valued ways of thinking. What’s different now from Rousseau’s time is that “with” the ADA the disabled are not as easily caste aside, and though this can be done (one thinks of all the micro aggressions the disabled invariably experience even now, arguing for accessibility, making their point for inclusion and respect against structural ableism) it’s no longer possible to lock the gates of Geneva on that annoying cripple. 

On the subject of micro aggressions much of the Reveries of a Solitary Walker tells of the slights and the disdain Rousseau absorbed and encountered. He was in fact an unpleasant man. I too some days am an unpleasant man. Human rights and their advocacy demand it. Seldom does progress develop for polite societies. But I’ll add also that in Rousseau’s time there was no language for depression—the term itself comes from an age when treatment and acceptance are commonly understood. Instead it was called “melancholia” and it was considered a form of madness. You don’t have to read Foucault to know what happened to the mad though why shouldn’t one recommend it? In any event Rousseau lived in an age when mental illness was believed to be a moral failing. This sub-Cartesian idea has never gone away. 

So as we celebrate the ADA @ 30 let’s remember how it protects and defends our outlier minds and bodies. Let’s not depreciate how crucial this is. Our solitary walks or “rolls” in our chairs are a matter more of recreation than enforcement, at least where the law is practiced. And may the global adoption of disability rights make this so around the world. 

I’ll let Rousseau have the last word:

“Always affected too much by things I see, and particularly by signs of pleasure or suffering, affection or dislike, I let myself be carried away by these external impressions without ever being able to avoid them other than by fleeing. A sign, a gesture or a glance from a stranger is enough to disturb my peace or calm my suffering: I am only my own master when I am alone; at all other times I am the plaything of all those around me.”

One might say, post-ADA, we’re playthings no more. 

The ADA@30 “Campus Cocktails”

I’ve met hundreds upon hundreds of college faculty throughout my life. I grew up on campuses. My father was a professor, then a Dean, and eventually a college president. My childhood was filled with cocktail parties and chatter. Over the course of my own career I’ve taught at four well known academic institutions and have served in various administrative roles. What I’ve come to understand is that higher education still functions like those cocktail parties of yore and I can attest as a blind man that it’s a party that doesn’t love the disabled. 

My wife worries when I write so candidly about academic ableism. She fears it will brand me, that a prospective future employer will be troubled by my candor. I worry about this also. Yet I can’t shake off what I know. The party is chummy and its held in houses without ramps, where the host doesn’t want your guide dog, where you’ll not be able to use the rest room. And when the clubby faculty actually see you they’ll quickly look past you to see if there’s someone better to talk with. 

Cocktail parties are engines. Their fuel isn’t the vodka, it’s self-contempt disguised as jocularity. As a boy I heard the terrible laughter of the professors—a horse laugh; the basso profundo guffaw; various squeals. They were “me me me” chortles. They scared me. Hawks, wolves, rapacious fish. 

The contempt of faculty for other faculty is an old story. I’ve seen feminist scholars who don’t like other women and who’d do anything to undermine their women colleagues. I’ve seen faculty hiring committees sneer at a job candidate who hailed from a working class background; seen faculty of color dismissed in coded lingo only the chummy would use—his work needs more grounding; further evidence from the published record, etc. 

Ableism in the academy is rampant and college faculty pass it around without scrutiny because it’s the last easy bastion of smug satire—contempt disguised as jocularity—chuckle, if you need an accommodation sonny you’re not a real student. You certainly shouldn’t be on the faculty. 

The professor who advertises that he studies “micro-aggressions” is an ableist. He’ll be the first to tell you if you were a nicer person you’d get the accommodations you need and really it isn’t structural ableism that prevents you from having what you require to work in dignity, it’s your pesky attitude.  Be nicer little fella. By the way while you’re up, can you get me another drink?

The controlling metaphor of higher ed is the boozy get together. Once you’re in, even if you hail from a historically marginalized background yourself, you’ll want to do some sneering about the aspirants who want educations in the land of exceptionalism. The super ego of the academy reflects the ethos of the private club. 

If the boy I was, the one in the attic, who feared the monstrous laughter of the professors had chosen the career outlined for a blind citizen of that era I’d have learned how to cane chairs or sell magazines. Higher ed was my route and yet the road was and is unfriendly just as it is for Black students and all others who are claiming their citizenship and rights from outlier positions. 

But still I expected more from the professors. I expected that by this time in our nation’s history they’d have put down their drinks. 

Some years ago I wrote a little send up “poem” for the professoriate: 

The Professors

Triflers beware! The professors are here:

Punctilious, mindful, on the move,

They’ll flush you out, invest your reveries,

Or close your brown studies. It’s you they’ve watched

Woolgathering, or nonchalant, improvident- tant pis!

Micawbers, slackers, skimmers, here’s your match,

The professors have arrived: the robed Savonarolas!

Leap in the dark, grope or guess, send up a trial balloon,

Rummage, ransack, winnow or appraise–

Inquisitors will grill you: mooncalf, booby, lout, buffoon.

It’s time for gumption, prudence, brains and mother wit:

A bluestocking’s wrangle, a sine qua non;

Alas, poor duffers, bookless, smattering, you invent

A limerick, an Irish muddle, clearly heretic.

O the professors are here: praise Mentor!

They swoop through the long schoolroom,

Vertiginous, oracular, confirmatory, O rodomontade!

Yes you can argue the professors don’t like anybody. But notice the poem reveals how the uneducated serve as metaphors for dumpling students or colleagues they so ardently despise. 

Am I being unfair? The question is absurd. American higher education is the last bastion of nearly undivided disability discrimination. Just visit this website: 

https://www.d.umn.edu/~lcarlson/atteam/lawsuits.html

Thirty for Thirty on The ADA: “Masks”

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 Nine: “Masks”

The American writer William Gass once wrote “culture has completed its work when everything is a sign.” It’s an ominous statement if, as I do, you believe culture moves like a river and is never still. Progress rides on currents. Still I’ll take Gass at his intended word—small “c” culture demands petrifaction, signs to rivet the mind and stop all thinking. Gass was warning us and his employment of culture has invisible quotation marks. One may also fairly say this about disability signs. They circumscribe the disabled, are sometimes a matter of envy among able bodied people who resent our perceived privileges, and though our signs are liberating, they can entrap us—they’re outdated the moment we post them, they don’t represent real humans. And who is really disabled anyway? It’s a 19th century word. It’s as outdated as antimacassars on horsehair chairs.

The ADA @ 30 cannot know this. It’s a living law but not your disabled neighbor. That the very word disability needs to be retired is unquestionable even as perhaps, the opinion may not be universally popular. We the disabled have fought too hard for our place at the table. We’ve fought too hard for our dignity and our sense of inclusion. Giving away the disability word would be foolish. Even a kind of defeat.

But one thinks of Willian Gass. Disability is an ossified sign and the public that imagines itself without disability (a fantasy if ever there was one….like believing in the tooth fairy) takes it to mean lack of capacity. The ADA @ 30 cannot fix this but its a real problem. The employer who turns away disabled job applicants believes culture has completed its work—thinks disability means lack of intelligence, stamina, gumption, power, potential, on and on it goes.

We change the universal wheelchair logo to make the wheelchair look more mobile, even a bit jazzy. I like it. Every wheelchair user I’ve ever known was both mobile and jazzy. This is true of blind folks whether they travel with a cane or a dog; true of the deaf who are poets of the vernacular and the sublime, sometimes making the the same thing. It’s true of my autist friends. They all know what Emily Dickinson meant when she said poetry makes the top of her head fly off. Autists move in spaces even NASA doesn’t know about.

Disability activists have claimed the world cripple to offset the cultural bone yard of the “d” word. As the late Nancy Mairs wrote” “as a cripple I swagger.” I’ve always liked this. I also admire the idea of “crippling” as a troubling of normal-think. Disabled lives are inventive lives; we are indeed “troubling” to normal people but we offer tons of imagination. Siri came from the blind and not your business as usual dudes.

I’ll take cripple over disability but main street still doesn’t see it. We need an expanded word for citizen as Black Lives Matter tries to tell us, as the Me Too Movement tries to tell us. I’m not abled or disabled, I’m a citizen, equal to you and you.

I like universal citizen.

This means I’m imagining citizenship as achievement, accomplishment, capacity.

Now I’ve a theory of sorts. Lost in the American culture war over wearing masks in a pandemic—lost in all the back flips from the right—lost in the arguments (such as they are) about the freedom to not wear a mask, the liberation from government control, the “don’t tread on me” flag waving—lost in all of this is a fundamental ableism, a sign, a William Gass irony. Masks make people look ill; appear disabled; resemble second class citizens. This is primitive ableist exceptionalism smothering science and common sense.

The disabled know all about it. I remember the cab driver in New York City who told me I was obviously a victim of voodoo. How else to explain blindness?

The cripples know we appear sinister. And the maskless believe they’ll be stuck forever in the land of broken toys if they succumb and do something that would save their lives.

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 

 

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 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.

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 

Of Floating Barrels in Virus Time

In Mark Twain’s “Life on the Mississippi” which I consider to be his greatest accomplishment (for it is Twain as scholar, essayist, and social psychologist) he describes a crew of riverboat men who think they’re being followed by a floating barrel of supernatural origin:

“Everybody was sober and down in the mouth all day. I don’t mean the kind of sober that comes of leaving liquor alone—not that. They was quiet, but they all drunk more than usual—not together—but each man sidled off and took it private, by himself.”

Now a barrel is just a barrel and a virus is just what it is. The virus does’t care about your mood and while you can use war metaphors all you like it is not your enemy. This is why Donald Trump’s press conferences are so dreadful. Dr. Fauci recognizes the virus is just what it is and needs to be confronted with reason. Trump turns it into a figure of sinister foreign origins or a hoax or a political cudgel.

^^

I carried around with me for years a tattered copy of the “Oxford Book of Superstitions” and I think I still have it somewhere. In Scotland it was believed as late as the 18th century that upon leaving the house if a man or woman met a blind person they would go blind UNLESS they went to the woods and located a tree with two trunks—a tree with a crotch filled with water. They had to gather that water and, as they say in cookbooks, put it aside. Then they had to find a black cat and burn it. Retrieve the water and mix it with the cat ash. Rub this fetid unguent in your eyes. The “Oxford Book of Superstitions” does not say where this apothecary and alchemical nonsense originated.

**

I hope you’re too wise for superstition. If you’re American I have my doubts of course. In general the great migrations of the late 19th century brought plenty of evil eyes and hats on the beds to the good old USA. My Finnish grandmother once shook hands with Richard Nixon and she didn’t wash her hand for a whole month. Imagine.

I’m guessing my good old Finnish grandmother thought Nixon’s handshake a harbinger of luck. She’d have been better off hanging a golden horseshoe above her door.

Did you know the Romans used to hang horseshoes above their doors to ward of plague?

**

Americans also like to “knock on wood” and cross their fingers.

My favorite widely believed contemporary superstition is “the itchy palm”:

There are many variations on this superstition. But the idea of having an itchy palm generally refers to someone who is greedy or has an insatiable desire for money.

In Shakespeare’s “Julius Caesar,” Brutus says, “Let me tell you, Cassius, you yourself are much condemned to have an itching palm.”

Some believe that if the right palm itches you will meet someone new, while an itchy left palm means that money is coming.

Others say that an itchy right palm means money coming in and a left-handed itch foretells money going out.

The superstition warns you not to scratch your palm unless you want to counteract the effect. The only way to scratch it without stopping the effect is to use lucky wood or brass.

https://www.everydayhealth.com/healthy-living/10-common-superstitions/

**

The disabled are thought to bring bad luck and if you think I’m joking just look at the ableist narratives going around. Our lives are deemed in many quarters to be sacrificial.

On Being Expensive, Difficult, and Lonesome in Higher Education

I feel like opening up. Some days, owing to blindness, because of my internalized “super crip” expectations (all that rococo internalized ableism) I think my job is to make being a disabled professor look easy. Alright, most days. OK. Every day. Yes daily I saddle myself with the false and unachievable supposition I’m supposed to be absolutely flawless. After all, to admit a flaw would be to succumb to vision loss. The medical model of disability IS the academy as it’s currently established. Of course I know too much to live this way. Sure. Absolutely. But the academy doesn’t care what I know. Universities have almost no interest in unpacking their nascent ableism since this would require examining a thousand years of questionable institutional exceptionalism. Alright, maybe eight hundred years. The academy is constructed entirely around the idea of the elect, the promotable, the meritocracy, the lithe and nimble of mind and body. As a professor I too must be this way. If I have merit it must mean this business of researching, writing, teaching, and serving is natural. If it comes with hard work it’s only the difficulty of ideas, the speed of a required curriculum that stands in your way, not your body or your learning style. If these are impediments you shouldn’t be within a hundred yards of the ivory tower.

I’ve been a tenured professor (lucky me) at three American universities and I was a long time adjunct at a fourth. My blindness has been a problem at all of these places—sometimes an ugliness—and now I must admit at the age of sixty four and still likely a decade away from retirement that the career—mine—has been painful, clotted, steep, and wearisome. In the faculty ranks the disabled are not naturally linked with other academic diversity initiatives. While my historically marginalized colleagues have many many problems (which I do not dismiss) they also have (at least at the institutions where I’ve worked) something like society, something like a collective voice. I am the only blind professor at Syracuse University and have been the only blind professor wherever I’ve worked. My embodiment and my accessibility needs are lonely and exhausting things.

I remember the famous poetry professor at the University of Iowa who told me when I was a graduate student that I shouldn’t be in his class. In his view, if I couldn’t read as fast as other students I was uneducable. All disabled students who read differently or communicate differently know this story. Certainly autists who type or students with learning disabilities know their very presence in college is secretly or overtly questioned by faculty and administrators. Academic ableism is the norm. It’s been the norm throughout my forty plus year career as a student, grad student, and faculty member. Wherever I’ve worked or studied I try for consistency: calling out accessibility problems and ableist attitudes. Behind this though is the pressure to appear perfect and make the “life” look easy.

Nothing could be more unachievable or hopeless. I have faculty colleagues (some of whom teach disability related courses) who don’t care a whit about the inaccessibility of websites, academic research materials, PDF documents, HR surveys, adopted computer programs, online teaching and learning portals, PowerPoint presentations at department meetings or campus events, films or video presentations—the list is long when you’re blind. I’m the outlier asking for admission to all these things and after years in higher ed I feel no closer to inclusion or admittance today than I did years ago.

The only good thing is that computers have gotten better. Tablets and phones have become more blind friendly. Apple has made my life better. Microsoft is getting on board. The technology now exists to assure colleges and universities are fully accessible to the blind. But they’re not. The ableism of bureaucracy and meritocracy holds back the blind over and over again.

Meantime I’m supposed to be (as I said above) absolutely flawless. Despite the lack of good usable assistive technologies across campus I should be a superior teacher, graceful, kind, cheer up the normal people who find disability either consternating or distressing, publish as much as my colleagues, if not more, and be a “thought leader” whatever that means.

Not long ago during the same week when I was faced for the umpteenth time with a new university web portal that was inaccessible, I was asked to participate in a campus inclusion workshop. I declined. I said I couldn’t do any more emotional lifting for the university. This was a breakthrough for me.

“What’s that?” you say, “you can’t help the able bodied faculty anymore?”

That’s right.

I’m not going to pretend at easiness anymore.

My weekdays are clogged with inaccessible features.

The built environment is consistent. I don’t belong.

I’ve spoken about these things over and over for years and my spirit is patched. It has holes. The moths of ableism have eaten my beret.

In recent weeks I’ve called on Syracuse University to make films and videos accessible to the blind.

Some people have responded positively to this. Others not so much. One faculty member went out of her way to tell me how difficult and expensive this is.

Blindness is always “difficult and expensive” whether the subject is audible traffic signals, a Braille menu, or getting screen reading software for a PC.

I’m difficult and expensive and noisy and bothersome and mostly lonely in higher education.