Why “Nothing About Us Without Us” Should Be Required Reading for Everyone in Higher Education

In his groundbreaking book Nothing About Us Without Us, published in 1998, James Charlton declared the disabled have a culture, an extensive one, and that time is up for able bodied people to be making decisions about the disabled without their input. In one of my favorite passages Charlton writes about the imperatives behind his book:

““Nothing About Us Without Us” requires people with disabilities to recognize their need to control and take responsibility for their own lives. It also forces political-economic and cultural systems to incorporate people with disabilities into the decision-making process and to recognize that the experiential knowledge of these people is pivotal in making decisions that affect their lives. Third, while the number of people affected by this epistemological breakthrough is relatively small, a movement has emerged. The disability rights movement has developed its own ideology and politics. It is a liberation movement that is confronting the realpolitik of the world at large. The demand “Nothing About Us Without Us” is a demand for self-determination and a necessary precedent to liberation. Fourth, the philosophy and organization that the international DRM {Disability Rights Movement} embraces includes independence and integration, empowerment and human rights, and self-help and self-determination. The demand “Nothing About Us Without Us” affirms the essence of these principles. Finally, the DRM is one of many emerging movements in which new attitudes and world views are being created. Through its struggle comes a vision that requires a fundamental reordering of priorities and resources.”

Excerpt From: James I. Charlton. “Nothing About Us Without Us.” iBooks. https://itun.es/us/gEPDU.l

Nowadays self-determination for the disabled has grown from a nascent concept to a global movement. From Africa to Asia, Finland to the Middle East, disability activists are not merely calling for their rights but are living their lives in accord with the best principles of independence and empowerment—educating others, assisting their sisters and brothers, demanding opportunities for children, health care, freedom to travel…just to name the basics.

The passage of the Americans with Disabilities Act in 1990 helped create international opportunities for dialogue between the disabled and served to incite a worldwide confrontation with what Charlton calls “realpolitik” but I’m calling “business as usual” because—why not?

What does “business as usual” mean where disability is concerned? Historically the disabled have been segregated, locked up, hidden, euthanized, sterilized, denied educational opportunities, kept out of public spaces, and perhaps worst of all—they’ve been talked over. Their lives are narrated (and mediated) by medicine and rehabilitation programs that always fortify pejorative meanings about disability—not disability as it’s actually lived, but instead reinforcing how it’s understood by the public. Biz as Usual pushes a medical model of disability which designates imperfect bodies, ill bodies, “incurable” bodies as outlier corporealities, things not devoutly to be wished—they become failed patients, abnormalities. Accordingly the abnormal must be farmed out to “special” places which stand at the edge of the fairground where normal people remain happily assembled. Consider the average college campus. Disability is “dealt with” “managed” “serviced” “accommodated” by underfunded offices that in many instances are hard to locate both physically and administratively. I’ve been to many universities where the disability services office is in the basement of a building—reachable only by elevator, or on the top floor of a building, reachable only by elevator—where in the event of fire there’s no way out. I’ve been to campuses where renovations to facilities have left out necessary improvements to make auditoriums accessible; classrooms usable; technology approachable; where there’s minimal or entirely unacceptable transportation for disabled people. These examples are legion and not exceptions. In Biz as Usual disability is conceived as a marginal issue, something that must be grudgingly acknowledged because of the Rehab Act of 1974 and the ADA of 1990, but not as a matter of culture, inclusion, communication, or respect. When college administrations make decisions about the physical or digital agora they seldom if ever consult with the disability communities on their campuses. “Nothing About Us Without Us” should be required reading for administrators, staff, and faculty in higher ed. Of course in 99% of the cases, there’s no required reading for the aforementioned. Faculty know next to nothing about disability, relying on the hidden “special” unit to solve whatever student accommodation request comes their way—and note, accommodation is always narrated as a problem. And so the disabled student is a problem. He or she is defective and trying to get into the happy tent. Faculty Member A resents having to think about this. “Doesn’t someone else handle this?” The disabled must be “handled” —the imagery is perfect given our histories, we’re straight jacketed and dragged away.

At Syracuse we offered the first disability studies courses in the country. We understand disability is part of our diversity and inclusion aspirations. But still we have problems. All too many students, staff, and faculty with disabilities feel left out of important conversations. And we have real problems. Unfortunately, raising them, we’re often made to feel like oppositional figures, malcontents, stylized figures with megaphones, waving our crutches. This should be easy to solve. Invite the disability community “in”—ask them what they think. Employ what I like to call the Ed Koch gambit—“How am I doing?” If the question is sincere it will come after listening. And then we will take positive, culturally engaged action.

Back to James Charlton whose book remains indispensable.

“Life itself is a series of struggles—some won, some lost. Resistance for most people with disabilities is a necessity for survival. The DRM should never lose sight of this. Throughout the course of this project, I have been impressed with how many of the stories and experiences of politically active people with disabilities reflect this proposition. We have begun to speak for ourselves, to make demands, to organize, and to educate others. ”

Excerpt From: James I. Charlton. “Nothing About Us Without Us.” iBooks. https://itun.es/us/gEPDU.l

In the coming years “best practices” in every human endeavor must acknowledge the experiences of the marginalized and embrace the opportunities for education diversity offers.

Ode to the Lesbian Farmers

Here come the Lesbian Farmers who we love,

Stomping home from the fields, damp and very hot,

For how else should they be, their farms like stoves,

And critters, machines, tall beans, even doves

Stealing the cool air? Farms are really Hell

Don’t kid yourself, agronomy’s pure Sisyphus,

That’s the way it is, repetitious, it smells,

There’s no time for love poems! There ain’t no Sappho-mus!

 

Ann Coulter and the R Word Ride Again!

In her book In Trump We Trust Ann Coulter has a chapter entitled: “Disabled Reporter Joins Media Effort to Create More Disabled Americans” (a giddy and generously flatulent title indeed) in which she writes about “The Donald’s” famous on camera imitation of NY Times reporter Serge Kovaleski who in fact, wait for it, is genuinely disabled. With the video rolling Trump made claws of his hands, flapped his arms and directly referenced Mr. Kovaleski. Coulter writes:

Trump denied knowing that Serge was disabled, and demanded an apology, saying that anyone could see his imitation was of a flustered, frightened reporter, not a disabled person. It’s true that Trump was not mimicking any mannerisms that Serge has. He doesn’t jerk around or flail his arms. He’s not retarded. He sits calmly, but if you look at his wrists, you’ll see they are curved in. That’s not the imitation Trump was doing—he was doing a standard retard, waving his arms and sounding stupid: “’Ahhh, I don’t know what I said—ahhh, I don’t remember!’ He’s going, ‘Ahhh, I don’t remember, maybe that’s what I said!’” 

Even a casual fact check showed that Trump did indeed know Kovaleski. His cruel pantomime was exact. It was vicious. Now Coulter wants us to believe that this was OK because Trump’s gesture wasn’t about a particular instance of disability—instead Trump was making fun of everyone who’s critical of him—they’re all imbeciles. And, according to Coulter, to make his point, lest his audience not be sufficiently alert, well, Trump just had to flap his arms and slur his speech and start babbling. Yes, he was doing a “standard retard” and apparently, according to Coulter, this makes the nefarious business OK.

As a disabled American I know a great deal about the “Standard Retard Complex.” Blind, wandering the playgrounds of childhood I was routinely called retarded and beaten by bullies who loved the “R” word—moreover the “R” word was always their opening gambit as even a six year old knows that once you’ve called a person “retarded” you’re free to do anything you want to him. You can dismiss him. You can punch him. You can push him down flights of stairs. You can put gum in his hair. You can poke him with sticks. You can push him to the ground and rub snow in his ears. You can follow him down the street chanting the foul poetry of scorn.

The examples above are entirely my own—I was a retard Ann. And to acknowledge your point dear Coulter-geist, they waved their arms and slurred their speech as they abused me.

For a disabled audience none of this is news. The disabled experience this and continue to experience it. Just last week a friend and colleague of mine who has a Ph.D. from Columbia University in Anthropology and is a noted human rights activist was followed in downtown Syracuse by a gaggle of boys as he made his way with his wheelchair. You guessed it. They called him a retard. Have you ever attempted to get away from bullies in a wheelchair? Have you ever tried to elude them when you’re blind?

“Standard Retard” is a lubricious phrase, oily, arousing ugly passion. For Coulter there’s nothing wrong with it—it’s no different than saying: “I’m gonna fuck you hard like you’ve never been fucked before, baby!” Hey! What’s wrong with that? That’s how tough men talk and tough women like it. Why I’ll bet retards would like it too if only they understood it. Duh! Wiggle arms. Make drooling mouth. Maybe drag a foot. The crowd loves it!

One suspects Coulter loves “retard jokes.” As a Retardologist I’ve heard them all.

Q. How do you get Ann Coulter to shut up?

A. Ask her about the etymology of the R word.

It of course originally meant to keep someone from doing something.

 

 

 

Placido Domingo…It’s that Kind of Day…

Why is it I prefer the voices of Placido Domingo and Jussi Bjorling over Pavarotti’s? Caruso was the greatest of them all. Jonas Kaufmann is a nice boy—very good looking, and more than passable though not as great as Bergonzi. You my blog readers shouldn’t care about any of this. There’s a world out there—a big scarified nasty place, lives short and brutish—Jesus, why should such punctilious amateur criticism mean a damn thing to you? Oh look at me this way: I’m giving you room to say what you like and don’t like and I hope you’ll join me.

I should say I grew up listening to opera. I had a shut in’s kind of childhood. I was either in the bomb shelter or the attic. And I listened to old recordings. That’s how it is with shut ins. When I was a college student I marveled at the improbable fact I was living in the age of both Domingo and Pavarotti. I heard them both. I also heard Jose Carreras, Alfredo Kraus—all at the Metropolitan Opera in New York. So there it is. I earned my opinions by being a fan. What I’m getting at is that over time I grew to feel that Luciano Pavarotti’s voice, as rich and soaring as it was, contained a strange quality, especially in the mid register—what I can only call a kind of “bleating” which I’ve never been able to un-hear, having heard it. He came to be known as “the King of the High C’s” and there’s no doubt Pavarotti could soar to high notes as assuredly as “the Great Caruso”—but it’s the middle range where much of what a tenor must produce and over time I came to appreciate the smoothness and control of Placido Domingo, who even today is my “go to” guy when I’m listening to opera recordings that aren’t vintage.

Why am I bothering you with this? I don’t know exactly save that I admire Placido Domingo tremendously and felt like writing it today on my blog. My favorite recording of La Boheme is with Domingo and Montserrat Caballe. If you’ve not heard it, download it. It’s probably even on YouTube. I’d be surprised if it isn’t. But the recording is really worth having.

I admit there are bigger issues to discuss today. The shooting of an unarmed deaf motorist has me all shook up. Bombings in Aleppo. Hospitals ablaze in Syria. How can anyone bother with opera?

Well, a shut in has to soothe himself. Herself. They-self.

Here, because you’ve read this far, is a lovely moment from La Traviata, Domingo with Teresa Stratis, another one of my faves:

https://www.youtube.com/watch?v=nR-MG9lcfXo

 

It is Early or Late for Different People

It’s a Mozart morning—not all of them are—there’s Suor Angelica or Gillespie, Dizzy; Caruso; even Peer Gynt. But this is a dawn for Piano Concerto #23 in A, K 488, it’s second movement breaking my heart the way it first broke it when I was a boy. Dangle a heart—there’s flying in our lives. Drop it like a sucking wave—there’s so much sorrow. A little boy with bandages on his eyes listens beside a record player, A late summer’s day…

**

How early did he know himself? Very. Don’t you understand what Mozart does?

**

It’s the adagio kills me.

**

It is late or early for different people

I am without a name

Others talk in the smoky railway car

Morning sun—the loneliest physics—

My feet shift under the seat

As though my toes

Stitch seams on carpet

How one makes poems from nothing—

A train, a few flickering points—

Don’t cry body, we’re going someplace

**

Finnish poet Tua Forsstrom: “Nothing terrifies us more than the godforsaken places”

I don’t know about this

When I think about it—terror and nothing sacred, I think less of the outer world and more about my bones

She would say: godforsaken means bones too…not just ruined orchards…

But the bones invented godforsaken in their private sphere

**

Well well

I didn’t have much when I came

Don’t have much now

I do have a well worn record of “Swan Lake” which you can have if you like

**

I like black currants

 

 

A Fish Called Oswald: A Donald By Any Other Name

“Jump!” says a fish to the other fish. When some actually do they’re carried off by hawks. You can’t trust everyone in a school. There’s also the adage: “fish stink from the head” but that’s a story for another day.

The problem, such as it is (it’s more than a problem really) has to do with failing to distinguish the difference between impulses and facts.

For a start, the eyes are deceiving. The sun sure looks like it orbits the earth. The famous “Zapruder Film” certainly appears to demonstrate Kennedy was killed by multiple people. “Jump,” says the conspiracy fish, and fishes leap.

You know all this. Why should we entertain the matter? Well for one thing, hordes of Mexicans are not crossing America’s borders and raping people. JFK was really killed by a single psychotic man who was given every opportunity to be a good citizen both in the United States and the Soviet Union. Only Cuba had sufficient sense to reject him.

We feel things and imagine they must be true. Bigots are especially prone to feelings. Trump’s supporters believe everything The Donald says—that President Obama was born in a hut in Kenya, that Mexicans are murdering Americans in droves, that Muslims are a threat to our very survival. Since none of these things are true let’s think about conspiracy theories for—oh, about one minute.

All conspiracy theories rely on the truth being uninteresting. Donald Trump could conceivably run a campaign about serious economic ideas but of course that’s not captivating. In point of fact he has no interest in fixing anything about the American economy. It’s better if you can get the easily misled to jump. And easier.

I remember as a college sophomore in the mid 1970’s sitting up late and arguing with a guy in my dorm who “knew” that JFK was killed by Lyndon Johnson. He talked about “the Yankee-Cowboy Theory” as I recall, and nothing I said about ballistics, fingerprints, forensics, and the ugliness of reality had any impact on him. That was my introduction to conspiracy and pathos as a way of life.

That’s of course “the thing”—belief in conspiracy depends on feelings—unexamined, fact-proof, and always self-serving. Let’s say for the sake of argument your life sucks. You feel it. It’s a daily struggle you have. Everything is wrong, even under your skin. It must be a force beyond you. They stole Camelot, killed the music, swiped your Mojo.

No one would say, “well Lee Harvey Oswald ruined my American fantasy,” since Oswald isn’t a coercive impetus, a strength, a force. Even if you have almost no critical thinking skills you can’t blame a lone nut for your misery. But if there’s a cabal, a secret society, an invasive horde, well then, you’re in good shape Sonny! You’ve been victimized! You’re not at fault if you believe America died on November 22, 1963 or your life has been destroyed because dark skinned foreigners do the jobs you and your children won’t do. If you’re miserable it has to be the product of someone else’s design. And there must be several conspirators, thousands, perhaps millions who are involved. How do you keep the fact that Barack Obama is a Muslim from Kenya hidden from the decent people of America? Millions are complicit. Don’t you see it? The sun orbits the earth. JFK was killed by his own driver. “Jump!” says The Donald.

The facts are of course touted by conspiracy nuts. My wife has been following a woman on Facebook who insists that if only those of us who distrust Trump would just watch a certain video, the smoke would be washed away, we’d see the truth, that The Donald is a messiah.

Trump’s supporters are wholly addicted to conspiratorial misery. Bigotry grows in such environments—I don’t think it always precedes the conspiratorial mindset…that is, you don’t have to distrust people of color or other minorities to hate yourself. But then, ah, how easy it becomes. You’re not a shifty little undistinguished ex-army corporal who couldn’t get into art school—you’re the purveyor of dark facts.

 

 

Disability in the Morning

Why am I such a sad man? Oh I’m funny alright. I can talk Dolphin like Robin Williams and imitate a medieval jester’s lavish chicken bone dance, but I’m sad. Some days I think it’s because of disability—a “dis-life” is a daily struggle and there’s no use pretending otherwise. If the attitudes of the able bodied don’t get you, the build environment will. Every cripple knows it.

My friend Bill Peace (who is paralyzed) and I often talk about the moments when, early in the morning, we sense respectively we don’t want to leave our houses. The spirit flags. Bill can see it coming: the ugly encounters with parking lot bullies who steal the handicapped parking; the smarmy waitress who says, “I don’t think I could live if I was in your situation.” These things really do occur almost daily. Blind? There are all sorts of miscreants waiting for you. “You can’t come in here with that dog.” “We don’t have time to make our software accessible.”

Whatever. And then one has to imagine the possibility that sadness precedes this life. We bring it with us. Born crying. We die crying, most of us. In the middle we’re supposed to smile.

Don’t get me wrong. I love smiling. I’m not against a good grin.

Sadness, conditional, part of mortality, is exacerbated by disability and there’s no way around it.

The politics of disability struggle keep me awake, literally, for I think about all the disabled who don’t have jobs. They don’t have jobs because there’s profound discrimination in HR circles. If you don’t think so, try this:

Apply for a job. When they call you, tell them you’re blind. You’ll be astonished at what happens next.

Longfellow said: “Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.”

A consolation I think: few will call me cold.