Ubiquitous Ableism Run Amok Department

The Finnish poet Tua Forsstrom once wrote “nothing terrifies us more than the godforsaken places” but I don’t think it’s true. I think disability frightens people even more than death or a profane landscape with goblins. A wheelchair or a blind man scares the pants off of most folks. They’re not even circumspect about it. “I think if I had to ride around in a chair like you, I’d have to kill myself” is a phrase heard often by my paralyzed friends. I kid you not. It’s in circulation, this idea that disability is worse than dying. Once, riding in a cab in New York the driver told me I must be the victim of voodoo. My blindness was living evidence of demonism. His subtext was clear: I’d be better off dead.

Lately we’ve seen several instances of disability murder—from Japan to California to the Middle East. From ISIS murdering children with Down Syndrome to a ceremonial garden party where tastefully dressed men and women say goodbye to their hostess who’s decided to end her life because she has Lou Gehrig’s disease, the idea that disabled lives ain’t worth living is absolutely everywhere and largely unchallenged. Of course there are plenty of us in disability circles who cry foul. We ask on social media why the news reporting is so ubiquitously one sided; why disability life remains so undervalued in our media. How frustrating it is for those of us who raise this question, since we already know the answer. We’re locked out of television networks; under represented in even the progressive press. Where’s the disability writer for The Nation or Mother Jones?

In our absence networks treat disability almost exclusively as inspiration. Recently NBC’s “Today Show” raised a guide dog puppy “on air” as a year long feature. While this was engaging the program never explored what blindness in America means, how real blind people live, what they do, how they do it. The treatment of the guide dog puppy was reduced to what we in the disability rights community call “inspiration porn” which is to say it was designed explicitly to make able bodied people feel good. That sweet Labrador puppy would soon change a blind person’s life. Fair enough but they missed the chance to interview blind computer designers, attorneys, school teachers—you name it. Who’d know blind people aren’t passively sitting in dark rooms awaiting the gift of dogs who’ll save their lives? Who’d know blind lives aren’t summed up by dogs?

When able bodied people don’t understand the richness and beauty of disabled lives they remain convinced disability is a calamity. Sometimes I think we should just drop the word disability and use calamity instead. Calamity Parking. Calamity seating. Calamity services.

Imagine the conversations. “How did you become calamitized?” “Oh, I played with dark magic…” Or: “God grew tired of me.”

I’m closing with a link to this terrific interview with disability activist John Kelly over at the website of Not Dead Yet. Disabled lives are not merely under represented in the mainstream, they’re actually under attack in movies and TV shows that suggest our deaths are better than our lives.

http://notdeadyet.org/2016/08/in-case-you-missed-it-john-kelly-video-interview-on-me-before-you-assisted-suicide.html

On Being a Token

I have to face it, I’m a token. Let’s visit tokens and tokenism. “Mistletoe was cut from an oak tree as a token of good fortune…”—the noun—descended from “betoken” (verb) “to be a sign of”—those of us so “tokened” are like laborers one sees wearing sandwich boards on city streets. The betokened are mobile sign systems. “Eat at Joe’s!” “Look! We Hire the Handicapped!”

I’ve been resistant to my betokened place. I’m a 60 year old university professor who entered higher education in his early thirties during “wave one” of feminism and I was present as the academy extended to include people who broadly hail from historically marginalized positions. Along came Disability Studies. “Aha!” I thought, (for I’m one of those “Aha” guys) “Disability is being taken seriously at last!”

Lucky me, I even landed a job.

So I’m fortunate but alas, I’m not a lucky token. Make no mistake: I’m a hanging plant.

I’m perfect for photo ops. I look fabulous standing with my guide dog next to the former astronaut, later a senator who graces the university with his good name. And I’m the “go to” professor when visiting “disabled” suddenly appear on campus and they want to showcase multiculturalism. Because I’m not a token when I’m more than a symbol I have to make choices. (I reminded the astronaut that as senator he voted against the Americans with Disabilities Act.)

Yes, Professor, you are a token.

He’s a token when he has no agency. When software and websites are inaccessible. His abled colleagues don’t really understand that this “inaccessibility thing” is a genuine problem. One Dean told me, “well it takes a long time for me to get my computer upgraded,” when I told her I’d been waiting months for someone to install a talking word processing program on my laptop. She equated ordinary delays and inconveniences with my inability to work. She saw no difference. Moreover, the comment was a micro-aggression. It ended further conversation. Where software and hardware support and disability are concerned I’ve been told to stop asking. My job is to look good and keep quiet. Tokenism indeed.

I know other disabled faculty, know they experience the same things, or worse.

Why then have I been slow to admit my entire betokened status?

In Finnish, my father’s language, “toivo” means hope. I’m a toiveikas mies—a hopeful man. I come from a long line of optimistic Scandinavians. Like many Finns I’m accepting of slow change. Essentially I’m more of a Finn than an American. I push steadily, keep on message, say what I think needs to be said.

I’ve told administrators at each academic institution where I’ve labored about their ADA snafus.

I’m almost inured to the eye rolling, though not entirely. It’s painful being a civil rights nag.

But here’s the rub: every day the place I work for makes decisions that perpetuate or extend inaccessibility I’m still a token.

In a way, when I’m not taken seriously I’m a stick figure. All tokens are cartoons.

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