Good Morning, Mr. and Mrs. Benevolence

Purgatory, from purge: “an abrupt or violent removal of a group of people from an organization or place.”

Purgatory, in Roman Catholic doctrine: “a place or state of suffering inhabited by the souls of sinners who are expiating their sins before going to heaven.”

“Well that’s it,” said Aunt Benevolence, “the good times are over. It’s time to send the lame and the halt straight back to the dirty boulevard.”

Uncle Benevolence wasn’t so sure. He scratched his purple wen. “I don’t believe, my dear, that there IS a dirty boulevard anymore. It’s been replaced by a heated, closed to traffic, “promenade” with decent shopping.”

“Well,” said Auntie, “we’re going to have to send them somewhere. Once there’s no Medicaid to speak of, and no health insurance for the knock kneed elders and the scoliatics, etc..”

“Well I hear North Dakota is empty,” Uncle said. “It’s mostly empty, anyway.”

“How will we get them there on the cheap?”

“Everyone knows boxcars are cheap.”

They sat for a time side by side in silence.

“It was easier on the old days to just take care of people,” Auntie said after a little while.

“Yes,” said Uncle, “but they’ve gone Pagan now. You know, Horace and shit. The best days are the first to go.”

“When did they forget Jesus?” Auntie asked.

“In America?” Uncle asked.

“Yeah,” Auntie said, “you know, Christian’s bundle, noblesse oblige, shit, even just a minimal sense of national regard for appearances…”

“It was never a Christian nation,” Uncle said. “And the Devil loves a vacuum.”

The Washington Post’s Distorted View of Rural Disability

The Washington Post has published an article that purports to examine a steady increase in disability Social Security claims by poor families. Under the heading “Disabled America” the headline bellows: “One Family, Four generations of disability benefits. Will it continue?” If you’re disabled like me and you’ve a sense of disability history you have to shudder since the half-rhetorical question evokes an edict by Supreme Court Justice Oliver Wendell Holmes who infamously wrote: “three generations of imbeciles are enough” in Buck vs. Bell, a 1927 ruling that upheld the right of Virginia to sterilize “mental defectives” without their consent. (You can read more about the case here.) In short, the Post’s headline raises the specter of eugenics whether the writer or editor knows it or not. Either way its fair to say “shame on them.”

Shame also for committing the journalistic equivalent of what I call “Betsyism” for Betsy DeVos who presides loudly over our education system without experience, knowledge, or curiosity. Only Betsyism, the willful extrusion of facts for ideological purposes explains the Post’s perfervid and ill informed article. Why is it ill informed? Because like other mainstream media forays into the subject of disability and Social Security there’s only a singular narrative: the US is filled with fake cripples who are stealing from good old you and me–a story that received considerable traction two years ago when the redoubtable radio hipster Ira Glass rebroadcast (without journalistic fact checking) a spurious story from Planet Money asserting phony social security disability claims are officially out of control in America. The provenance of the story hardly mattered to Glass, who, when confronted with its falsehoods simply declared himself a journalist and shrugged. It mattered not at all to the doyen of “This American Life” that the tale was largely the dream child of a notorious rightwing think tank, or that the outright falsehoods contained in the broadcast might do tremendous damage to the disabled. Falsehoods about the powerless play well.

One also remember’s NPR’s broader foray into this terrain when Chana Joffee-Walt launched a blockbuster series of stories about disability benefits. Her stories argued there’s a massive fraud taking place, that the number of people claiming disability benefits has gone up alarmingly. What’s of interest from a disability studies perspective is that Joffee-Walt offered (as a means of laying the foundation for her story) that there’s no medical diagnosis for disability–a matter that she found shocking.

Disability isn’t a medical condition for obvious reasons: the limitation of function that renders a person “disabled” depends on multiple factors–some have etiologies, some have a great deal to do with structural and social barriers. This is why scholars who study disability do so through both medical and social analyses. A Betsey-esque analysis lacks this sophistication and suggests poor people with disabilities should be held as suspect for not being–well, rich. Or as Herman Melville put it: “Of all the preposterous assumptions of humanity over humanity, nothing exceeds most of the criticisms made on the habits of the poor by the well-housed, well- warmed, and well-fed.”

The Post’s article (which I won’t summarize) argues that poor people beget intellectually disabled children—actually pray to have them—for kids with bi-polar disorder or who are on the so-called autism spectrum are trailer park cash cows. A la Betsyism if you want people to believe an elitist narrative, startle them with the nefariousness of poverty as Reagan did with his mythological story about a welfare cheat who owned several Cadillacs. If you want readers to evince a collective moue of disgust tell them about real life hillbillies who are just like the characters in Katherine Dunn’s novel Geek Love—circus performers who’ll do anything they can to have crippled and deformed children—this is the insidious face of American poverty. Don’t tell your readers that impoverishment increases the likelihood of illness, that the lack of access to prenatal care and education increases the probability of childhood disability. Don’t tell them that the absence of accommodations in pre-school and all subsequent schooling assures failure for children with intellectual disabilities. Don’t tell them. Just insinuate the poor are up to dirty tricks. Don’t remind your readers that Adolf Hitler called the disabled “useless eaters.”

Anderson Cooper and Sanctioned Scorn

The tide of Fascist contempt (evinced by Donald Trump’s sordid campaign for the Presidency)  has turned quickly to sanctioned scorn, something far worse than “blowing off steam” or simple exultation. Two days ago a hijab wearing woman was pushed down subway stairs in Manhattan; swastikas now appear everywhere from the University of Iowa’s library to a Jewish cemetery in upstate, New York. These are hate crimes. Moreover under the emerging administration they’re going to be business as usual.

I’ve been shivering. I recently experienced my own first bit of hate when a cab driver, (also the owner of the company) refused to give me a ride because of my guide dog. That refusal quickly became a matter of putting me in my place in the new “order” for he invoked Trump when I said this would become a news story, when I said I’m a writer and have written for many publications including the New York Times. “Trump is taking care of you people,” he said. He also said, “now I suppose you’re going to whine about your rights.”

In his canonical book The Rise and Fall of the Third Reich William Shirer described Hitler’s first meeting with Germany’s industrialists.

“Hitler began a long speech with a sop to the industrialists. “Private enterprise,” he said, “cannot be maintained in the age of democracy; it is conceivable only if the people have a sound idea of authority and personality… All the worldly goods we possess we owe to the struggle of the chosen… We must not forget that all the benefits of culture must be introduced more or less with an iron fist.” He promised the businessmen that he would “eliminate” the Marxists and restore the Wehrmacht (the latter was of special interest to such industries as Krupp, United Steel and I. G. Farben, which stood to gain the most from rearmament). “Now we stand before the last election,” Hitler concluded, and he promised his listeners that “regardless of the outcome, there will be no retreat.””

A sound idea of authority and personality. The struggle of the chosen—by which Hitler meant the people sitting in that room. The population at large? They’ll get what they get when we say so. Others—those who resist—will be eliminated.

Now in America it will be hard to directly eliminate opponents. Of course it will. But the broadcasting houses, the churches, the state governments, all can be turned toward the immediate work of reinforcing a narrow view of private enterprise, a slim view of acceptable citizenry, and certainly the cult of personality. My cab driver said so. He said it plainly. My people are now being taken care of by Trump.

On Sunday evening CBS ran a vicious piece about the Americans with Disabilities Act, essentially portraying it as a profound impediment to business. Lainey Feingold, a noted disability rights attorney writes at her website how 60 Minutes filmed a piece about the 25th anniversary of the ADA many months ago, a story which highlighted breakthroughs in technology and employment for the disabled. They never ran that story. Instead, Feingold writes, they ran an entirely oppositional piece:

Why would 60 Minutes decide to run a negative story about the Americans with Disabilities Act now, eighteen months after filming? Why craft a story that left out hours of film and interviews about effective ADA advocacy. There can be only one explanation. Someone at 60 Minutes wanted an anti-ADA piece to support Donald Trump’s anti-regulatory, anti-ADA, and anti-disability agenda.

When television networks air such programing they’re of course doing the work of a rightward galloping administration which already, even before it takes office is overtly engineering a collective rollback of civil rights.

Yes my people are now being “taken care of” by Mr. Trump. Except they aren’t, they’re being shoved to the side, slopped and hogwashed by complicit journalism. Anderson Cooper should be ashamed of himself, though one supposes he lives in such a perfect bubble he’s beyond social irony. Or perhaps he’s a single issue politician. Maybe.

Now you can bank on what’s to come: elimination of more voting rights, destruction of women’s rights, piece by piece, deportations and unlawful arrests, a significant boost to the school to prison pipeline, toxic water and air—the list is too long for a customary sentence in the English language.

 

 

 

Denied a Cab Ride, Grieving for Who We Are…

Tomorrow I’m heading to the University of Michigan to participate in a program on accessible publishing hosted by the UM Press and the University’s library. As a blind writer who teaches I know as much as almost anyone about how difficult it often remans to get access to books, journals, online publications, websites, software platforms—it’s a long list. So my hat is off the the folks in Ann Arbor for taking seriously the challenges of access for people with disabilities and putting together an ambitious workshop on accessibility.

In a mood of warm anticipation, packing for my trip from Syracuse to Detroit, I was wholly unprepared for the mean spirited encounter I had by phone with a cab company in Ann Arbor this afternoon. Just recounting what happened is an exercise so objectionable I’m forced to be brisk as the altercation was nasty.

I told the man who answered the phone I needed a ride from Detroit-Ft. Wayne airport to the U of Michigan. He was agreeable. Then I said I had a guide dog. He was disagreeable. He said:

“These dogs are stinky, they go to the bathroom, they’re dirty, I can’t have them.”

“Not the first time this has happened to me,” I thought.

“Guide dogs are allowed everywhere,” I said.

“I don’t care, now you’re going to tell me all about your rights,” he said. (Sneering, he was. Your rights…uttered as if I was some whiny baby.

“Well yes,” I said, “it’s a violation of state and federal laws to deny a blind person and his dog a cab ride.”

“I don’t care,” he said.

“You should care,” I said. “It will become a big story. Plus there’s a huge fine associated with this.”

“I don’t care,” he said.

“This will become a news story,” I said. “I myself write for newspapers like the New York Times…)

It’s hard to describe the effect this had on him. He began shouting that Donald Trump had won the presidency and “you people” (apparently meaning blind New York Times readers) “don’t matter anymore.”

He was absolutely vicious and crowing about how people like me don’t matter.

I said, “well, I’m going to turn you in to the Department of Justice.”

He said he didn’t care.

I hung up.

I went upstairs to tell my wife.

Five minutes later he called me back.

I answered.

He said, “I have allergies.”

He’d apparently shared his conversation with someone else. This was his effort to pull his leg out of a hole.

“It doesn’t matter, you still violated my civil rights,” I said.

He began abusing me again. Hot, geothermic mistreatment.

I hung up.

I posted his company’s name and phone number and a description of what I’d experienced on Facebook.

I didn’t know the man’s name.

He apparently received dozens of phone calls throughout the afternoon, including some from the press.

He’s now claiming victim status. He has allergies. He can’t be expected to take a passenger with a service dog.

The law is very clear on this matter. He doesn’t have to. All he has to do is find me a cab that “will” take me.

He chose contempt and mean-spirited bullying.

Some people on Facebook have messaged me to say he now regrets the matter.

Me too.

Whatever happened to saying, “hey, I know all about having a physical condition! I have one myself. I can’t help you but I’ll get you someone who can.”

Instead he went into a rebarbative snarl and wouldn’t stop.

He apparently told someone on FB that I ruined his day.

I have in fact filed a formal complaint with the Department of Justice and the Michigan Department of Civil Rights.

I’m still shaking. I want to close by saying I’ve heard promptly from the U of Michigan. They’re as upset as I am.

Is Trump’s ascendancy now a patented script?

If you hail from a historically marginalized group you know the answer.

 

 

 

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

Disability and Faculty Self-governance in the Age of Neoliberalism

When talking to faculty, students, and staff with disabilities who work or study at America’s colleges and universities, one quickly learns that higher education is broadly disinclined to treat disability in a concerted and efficient manner, but instead engages in widespread administrative deflection. From architectural barriers to simple pedagogical modifications colleges routinely drop the ball where equal access is concerned. So ubiquitous have these stories become one can browse the web for hours reading of school after school that has violated basic civil rights protections guaranteed by the Americans With Disabilities Act. From the University of Michigan, to Penn State to Harvard, one finds dramatic instances of disability discrimination. As a disability rights activist and professor who teaches that incorporating physical difference in the village square creates powerful opportunities and advantages I’m often asked why higher education performs so poorly. For many years I imagined these failures had simply to do with a basic financial resentment of the ADA, as one hears the widespread complaint from college administrators that it’s simply an “unfunded mandate.” The idea that barriers should be removed as a matter of civil rights is represented as a violation of libertarian principle. This seemed reasonable enough until over time I realized there’s a broader delegitimization of disability in the Ivory Tower and it’s only loosely connected to money.

In a recent interview at TruthOut Henry Giroux observes of Neoliberalism:

As a form of public pedagogy and cultural politics, neoliberalism casts all dimensions of life in terms of market rationality. One consequence is that neoliberalism legitimates a culture of cruelty and harsh competitiveness and wages a war against public values and those public spheres that contest the rule and ideology of capital. It saps the democratic foundation of solidarity, degrades collaboration, and tears up all forms of social obligation.

 

The past quarter century has seen the American academy shift from collaborative and democratic agreements about social obligations toward an embrace of monetized aggression. During this period the ADA has been overtly ignored by colleges of every kind. The two developments are syncretic, reflecting what Giroux rightly calls the failure to contest the rule and ideology of capital. It’s relevant to note in this context that “disability” first appeared in the mid-19th century as a term for laborers who’d been rendered unfit to work. The 20th century saw sustained advances in rehabilitation and employment services for people with disabilities, improvements which culminated in the passage of the ADA in 1990.

Neoliberal pedagogy and campus politics depend on limited faculty governance, the erosion of public debate, and the establishment of a culture of severe economic competition. Disability is re-inscribed as a 19th century problem. Accommodation services are sequestered—students are “sent” to ancillary offices for accommodations which they may or may not receive; faculty are taught nothing about pedagogy and disability; basic services like sign language interpreting or accessible technology are hard to find, and sometimes non-existent. At one liberal arts college where I recently spoke, a disabled student told me, “the disability office is hidden like an asylum.” Indeed. Disability is a drain on capital. Not because it’s an unfunded mandate but because after all is said and done, neoliberal visions of success are built as Giroux rightly says on cruelty and competitiveness.

Harvard and MIT are contesting the demands of deaf students and staff that instructional videos be captioned. Harvard’s opposition is symptomatic of the neoliberal university’s war on basic public values. In terms of governance Harvard’s resistance represents perfectly the academy’s abandonment of the principles of social obligation. But institutions only arrive at such a place when faculty are deterred from self-governance by the obligation to write endless grants and compete for provenance in the marketplace of capital ideas, when teaching and idealism are considered quaint and immaterial. In turn the civil rights of academic communities are “handled” by offices that are both physically and culturally distant from the “agora” or academic life of the campus.

The neoliberal campus relies on distention of self-governance and enforces centralized administration. Moreover it thrives on factionalism. A faction, as James Madison famously wrote in essay 10 of The Federalist Papers is a group “who are united and actuated by some common impulse of passion, or of interest, adversed to the rights of other citizens, or to the permanent and aggregate interests of the community.”

Because college faculty are often divided by competing interests and since some of these divisions reflect the complications and struggles of identity, it’s difficult to forge consensus about disability and disability rights—they seem tailor made for deflection, a problem for a specialized office. In other words, disability is often viewed by academics who are already narrowly factionalized as too difficult to embrace. As Lennard Davis notes in his book Bending Over Backwards: Disability, Dismodernism, and Other Difficult Positions:

Because disability is an amorphous identity with porous boundaries, other identity groups in the United States have had difficulty incorporating it into their goals. Previously legitimized groups such as Latinos or African Americans have been reluctant to admit disability into the multicultural arena. For example, in 1996 a disabled, white assistant professor at a historically black university found that the chair of the department and the dean of the school had recommended against tenure, saying that any analogy between disability and race was both methodologically unsound and insulting to the unique history of African Americans. For them, the categories of oppression were mutually exclusive and should not be mixed. After much public outcry from the disability community, the president of the university decided to award tenure to the assistant professor. Nevertheless, the issue of an identity defined by impairment as opposed to one defined by race or ethnicity is a sticking point for some. When some faculty members at Hunter College in New York City tried to include disability studies as part of the requirement for a multicultural curriculum, they were opposed by many of the ethnic and national groups that usually make up the progressive wing of the university. Hunter ended up deciding to omit disability from the curriculum.

 

From a disability studies perspective one sees how sectarian infighting among faculty concerned with categories of oppression can further the work of neoliberal administration, not by embracing the neoliberal brand of governance, but by replicating its effort to de-legitimize disability as a mainstream concern. De-legitimized disability remains in the province of non-academic offices. In turn university faculty fail to understand and embrace the nation’s largest minority. Such neglect reinforces a central fact of neoliberal administration which supports deflection where accountability is concerned and it represents rather broadly a further symptom of weakening faculty self-governance.

 

 

Me Before You, Benedict Arnold…

If disability is pictured as a thermometer one sees at the very top of the mercury scale “Courage” and at the bottom “Cowardice”—a register of willfulness or mind over matter which represents disablement as being entirely a state of mind rather than physical or neurological reality. How often does one have to endure the slogan: “the only disability is a bad attitude?”

Quite often it turns out. Courage is an easy word to bandy about. Whenever the first “c” word is used in media representations of the disabled, it’s invidious twin is suggested, as if living a crippled life is a stark affair when you roll down the street or follow your dog. You’re either heroic or you’re some kind of attitudinal traitor, a Benedict Arnold of the spirit.

Of course temporarily abled people don’t live this way. They’re not heroic in the supermarket, not cowardly when they shake their fists at drivers in front of them. The emo-thermometer is reserved solely for the cripple. I’ve lived with this fictitiousness all my life and if you’re one of my crippled readers I’m certain you have too.

Lately there’s been much consternation and outrage among disabled activists and their extended supporters about the film “Me Before You” as it depicts a paralyzed man’s decision to end his life, not merely because his disability is insupportable, but because he doesn’t want to burden the abled woman who loves him. The film is creepy, inauthentic, and ugly. What interests me however is it’s emo-thermometer reading: “Courage” becomes “Cowardice” or subsumes it in a way that suggests “the only bad attitude is a disability”—a twist that’s chilling and should alarm even the most seasoned viewers of films and television programs. Living with disability is presented in “Me Before You” as a traitorous act, a betrayal of love.

Love is presented as light while disability is dark and overshadows life. Now, ahem, life itself doesn’t work this way. In life trains arrive and depart, sunlight strikes the telephone wires, groceries are purchased, lawns are clipped—which is to say, life, living it, is, as any bird will tell you, simply a matter of the daily worm. Moreover living is essentially the hard thing, dying is easy.

This is what’s so objectionable about the film. Dying is easy. Disabled life is presented as a bad choice, a bad attitude if you will. “Me Before You” turns the standard (and already crappy) disability emo-thermometer upside down.

Ugh.