Category: Uncategorized

The ticket agent at the United Airlines desk in Syracuse wants to know if my guide dog has a license. Before I can say something snappy, like, “yes, she’s Guiding Eyes 007, licensed to thrill,” the agent next to him, a woman, says, “of course he has a license” which puts an end to the matter for the conversation shifts to the apparent fact I’m booked for a nonexistent flight. The agents argue, push buttons, conclude my flight does exist–the destination was changed–I’m in the right. For once in my life I haven’t said a thing. I was a perfect statue, clutching bag and leash. I want to tell agent one that he isn’t supposed to ask for a license for a guide dog, but decide to keep my powder dry. “Know when to hold ’em, and know when to fold ’em” etc. etc.

I joked with my friend Lance Mannion (who drove me to the airport) that I hate all the airlines, that they’re equal opportunity emotional vandals. Then I walked through the pneumatic doors. But today the TSA folks were friendly and helpful.

 

It’s the conditional nature of disability travel that’s so hard. While everyone talks about the indignities of air travel, in truth the experience is much worse for people with disabilities. Sometimes the sight of an airport is a limbic experience for me–I just know something horrific is about to happen, like the time I was supposed to fly to Chicago to appear on the Oprah Winfrey Show. The flight was canceled and the airline hired a bus to take passengers from White Plains to LaGuardia for a substitute flight. But the bus driver wouldn’t let me on the bus with my guide dog. He became belligerent. When I called the cops, Lo and Behold, they scratched their meager scalps, unsure if not letting me on the bus was a crime. Eventually I just got on the bus while the driver and the cops argued like bald men fighting over a comb.

Disability travel is often demeaning. Whenever I see a well dressed business man fuming because his flight is delayed I think “you don’t know the half of it pal.” My very presence is often treated as merely conditional, a matter of sufferance, and is suffused with a de facto permission to behave unprofessionally. There are exceptions. Most travelers with disabilities can report random acts of kindness. But they often seem infrequent.

 

My problems pale when compared to the horrors wheel chair users face. Ruined chairs, third rate assistance boarding and deplaning aircraft–their narratives are horrific.

We dust ourselves off, keep going. Traveling when you have a disability is a right. It’s also a political act.

I urge you to read Scott Rains’ amazing blog The Rolling Rains Report to see the best in disability travel writing. For all the difficulties disability travel has hundreds of glories.

 

 

A PETITION TO NEW YORK STATE REGARDING ITS PROTECTION AND ADVOCACY SYSTEM
ACTION NEEDED by April 5th!!!

Bill Peace (“Bad Cripple”) has written his 500th Post and he gives those who care about disability and human rights a stirring overview of where we stand, roll, and gesture from–America is increasingly hostile to the poor and to people with physical challenges of all kinds. I urge you to read his post. 

I blog because of the wolves at my door. That’s of course Edgar Rice Burroughs, and his wolves were creditors and his blogging was Tarzan. My wolves are metaphorical and that’s not fair to the wolves, the real ones, for indeed they have enough trouble. Probably my wolves are crows–they’re just waiting for me to drop dead so they can eat my best parts. Alright, forget metaphor. There is a generalized “ableist” cultural dynamic, as present among neo-liberal academics and creative writers as it is among human resources officers; present among democrats and republicans; it runs across all ethnic and racial divides. People with disabilities are often, at best, poorly admitted to culture’s circle, grudgingly admitted–and at worst they’re prevented from inclusion. This holds true whether we’re talking about jobs, education, the right to enter public spaces, and, yes, even to stay alive. 

At a writing “residency” where I teach occasionally, I was talking with a woman faculty member. Like a lot of people she imagines I can’t see anything at all. (Most blind people these days can see a little bit, but I digress.) While I was talking to her she was busy looking beyond me, craning her head, trying to see who she could talk to who might be more important. I’ve seen this with plenty of people. Trust me, I don’t have bad breath. In truth, they want to get away from the blind guy and talk to a real person. That’s how ableism works. It works in hundreds of insidious ways. 

Bill Peace has done an excellent job of highlighting what’s on our cultural radar. He is one of the reasons I blog. If he can keep up the good fight, so can I. 

This ain’t no kidding around. Something half wolf, half crow is knocking. 

Such a long day awaits me. My friend Amanda (who is autistic) is fighting for her life in a hospital where she’s been counseled to give up and die. Able bodied people can’t imagine disability life–much less an inventive and rewarding one. Nowadays hospitals employ people known as “hospitalists” who look for ways to shave a buffalo nickel by counseling patients to take the easy way out. Such a long day awaits.

 

Here is to the long days, to their unpredictable, happenstance cosmic jokes and blues, to the songs overheard by chance. Once while floating in a gondola in Venice I heard Frank Zappa’s “Peaches en Regalia” coming from a high, open window.

 

No electroplated gussied running dog of the bourgeoisie wearing a faux lab coat should be allowed to tell Amanda about her prospects for a good life so long as she wants to ride the improbable gondola.

 

Such a long day awaits. I have many autist pals. Here’s to their thrilling minutes.

 

 

Last week Chana Joffee-Walt launched a blockbuster series of stories on National Public Radio about social security disability benefits. The stories argue there’s massive fraud–the number of people claiming disability benefits has gone up alarmingly. What’s of interest from a disability studies perspective is that Joffee-Walt offers (as a means of laying the foundation for her story) that there’s no medical diagnosis for disability–a matter that she finds 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. NPR’s analysis lacks any of this sophistication. This glaring failure means that poor people with disabilities can be held as suspect for not being–well, rich. 

 

I am for instance a blind man with a graduate degree from the University of Iowa’s “Writer’s Workshop”.  I teach at a major university. With a talking computer and a guide dog I can work productively. When my back aches from a herniated disc the university will provide me with a Herman Miller chair and pay for physical therapy. I have the same disability that keeps 70 per cent of the blind and visually impaired unemployed. My advantages? A combination of luck, education, and white collar privilege.

 

A man going blind, who, for the sake of argument, works the register at MacDonald’s, who has perhaps, a high school degree, will be unemployable without further education, rehabilitation, orientation and mobility training, assistive technology and a superbly adventurous employer. Note the statistic above: 70% of the blind are already unemployed, and many of them have all the attributes I’ve just described. That’s why I mentioned luck in the paragraph above. Paul Newman once told Larry King the reason he started his “Newman’s Own” charity and the “Hole in the Wall Gang” was because he knew for a fact there were better actors in New York City in the years following World War II. And yet he got the lucky break. He never forgot that much of his success had something to do with forces beyond his talent. Americans tend not to understand this. Certainly NPR has failed to recognize that poor people with disabilities face a monstrous task–one that is nearly impossible. Over the past decade (the same decade in which the claim of massive disability fraud is fixed) rehabilitation agencies have closed, the VA has fallen behind its case loads by years, and poverty and aging have increased. 

 

If you can no longer stand, or bend over and you’re a blue collar worker, you are in fact disabled. It doesn’t matter that Joffee-Walt has an acquaintance in her circle with the same condition who works like a bull dog. Disability is a social construction not a medical one. I’m still astonished by the bad reporting NPR has unleashed. Amazed to read that Ira Glass thinks that same reporting is “just fine”–my amazement has as much to do with the failure of attention to the fuller dynamics of the subject as it does with the evidence of ableism.     

  

Related:

See Lennard Davis at Huffington Post:

http://www.huffingtonpost.com/lennard-davis/npr-reporter-chana-joffew_b_2971443.html

 

I say there is a meadow, then, in trickery, I place it under my ribs;

Then in trickery, place it under my left rib, third from the bottom;

A rib like any, a field like a farm 

Early in June 

And I wish you well, 

You have traveled a long road.

 

Inside a clamor of birds, stir of my blood

Tells me Lord, you are walking in tall grass.

 

By Andrea Scarpino

 

“I cried a lot. And I was glad I could cry,” my mother said, describing her weekend. Her baby brother is dying of cancer, stage 4 in his lungs and brain. “He never smoked, never even took a drink,” she tells me repeatedly. My mother, on the other hand, Zac calls the Keith Richards of the family, a woman who has made innumerable poor health choices with seemingly no adverse repercussions, who seems on the verge of death on a regular basis and just keeps bouncing back.

 

Last week, I ate a lunch I’ve eaten hundreds of times, but within minutes, both of my arms burned with hives, my face flushed red, the back of my throat itched. An allergic reaction? To food I eat all the time? My mother defies death regularly, and I feel like I’m barely clinging to life, like I never know what curveball my body will decide to throw next. And I wonder often if I’m creating my own problems, if paying such close attention to my body makes me hyperaware of issues other people wouldn’t even notice.

 

For several years when I was growing up, we lived on a small lake in Michigan called Wing Lake. Our backyard was filled with trees: a huge willow that fell one night in a hurricane, a sour cherry tree, pear trees. But my favorites were two apple trees that stood side-by-side, bloomed in white arcs every spring, and produced small, mealy treats that mostly the geese ate. The apple trees had low branches my brother and I climbed and rode like horses, pushing ourselves up and down through the air. My body moved gracefully among their branches. My body felt free. Powerful. Full of light.

 

A friend asked me recently about my pain issues, how I’ve been feeling. And I realized I don’t want to talk about my pain anymore. I’m tired of it, of worrying, of living in a body I’m sure will let me down, of writing and thinking about the body as a site of continual collapse, continual loss. My grandmother had breast cancer, a mastectomy, my aunt has had breast cancer twice. My father, colon cancer, diabetes, a tracheotomy. And now my uncle is dying. I want the body to be something else: a site of joy, of happiness. I want my mother’s resiliency. Or barring that, I want at least to feel my body again in those apple trees. To feel in myself a wildness. A blossoming.

 I don't remember how old I was when I first heard about the injunction against shouting fire in a crowded theater.  I think I was roughly eleven years old.  Most of my cultural awareness coalesced in the fifth grade.  That was the year I began reading the New York Times in earnest.  My mother bought me a magnifier which allowed me to see newsprint with my one good legally blind eye.  My eye jumped like a sparrow and words hopped about as I scanned them.  Reading minus the ability to track left to right is almost impossible.  But I kept at it.  Despite grinding headaches and back spasms I read the news and learned about all manner of things.  Don't shout fire unless its true.  It was a good year for my moral development.  

I've been writing for several days on this blog about a rapidly developing story concerning disability benefits and possible fraud.  These stories have been poorly researched and I've been arguing that the topic of disability should require sophistication from reporters who choose to explore it. Because the stories now circulating are insufficiently informed, the reporting is sensational, driven by pathos (amped up emotion) rather than broader research.  Note that I'm not talking about "balance" in reporting–let's agree that everyone who has a fifth grade education is opposed to fraud.  Alright.  We're in agreement.  I'm not talking about balance.  But I am talking about knowledge.  As any seasoned reporter will tell you, knowing a subject guarantees a three dimensional article–as opposed to something that looks like propaganda.  Even H.L. Mencken, one of the great polemicists of American journalism spent time talking to the locals when he was reporting the "monkey trial".  In this case "talking to the locals" means speaking with scholars who actually study disability–I know many first rate public intellectuals who I could recommend to Public Radio International, NPR, Huffington Post, and now The Atlantic, just to name the most prominent outlets now spreading the story about disability benefits fraud.      

The general premise of the articles now circulating comes from a Bloomberg report from May, 2012.  In effect, Bloomberg's Alex Kowalski started the fire in the theater by reporting unemployment figures are declining because people who can't find jobs are giving up on work and collecting social security disability benefits.  Mr. Kowalski's article explores the gray area, a sink hole really, into which older, often unskilled workers eventually tumble.  In a country with an enormous service sector economy–one that requires manual dexterity and mobility, many physically impaired workers on unemployment find they can't easily return to work.  Mr. Kowalski's article acknowledges this and seems to me altogether better researched than the pieces that have followed.  What's "followed" leaves out what may be the largest fact in this sensational story–workplace accommodations for people with disabilities are brutally hard to obtain, often impossible to acquire, and largely depend upon a worker's ability to serve as a persuasive and unafraid self-advocate.  

Since I began this post with a figure of speech, the "fire in a theater" let's say that reasonable accommodations are the "elephant in the room" whenever disability is the topic.  Notice how I began this piece?  I said my mother bought me a magnifier which allowed me to see newsprint when I was eleven years old.  Nowadays I use a talking computer.  My Macbook with "Voiceover" software is an accommodation.  I know how to ask for it.  I know my rights.  I'm secure in my self-advocacy.  But suppose I'm a garment worker.  Suppose I'm losing my sight?  Suppose I lose my job?  Add to this that I never knew how to advocate for myself in the first place.  You won't be returning to work.  70% of working age disabled people in the US remain unemployed.  Why?  Because potential employers don't want to provide reasonable accommodations.  They fear theexpense, though in reality the expense for a typical workplace accommodation is negligible.  

Disability is a hard scratch if you want to work.  Once when I was unemployed having lost an adjunct teaching job I met with a counselor from the New York State Commission for the Blind.  He said I’d never find another teaching job–blind people seldom get jobs anywhere–but he knew of a factory that made plastic lemons–they might be hiring people with disabilities–really, I ought to go there.  I decided to go.  The supervisor of the lemon factory took one look at me and said: "Gee, we just filled that position."  The lemon stamper job would not be mine.  Sticking with blindness and employment, a friend recently wrote me about a blind man with a guide dog who went to a jobs fair.  He brought along a "hidden" sighted companion.  This blind fellow gave his resume to several HR representatives and, in turn, his sighted friend watched discretely as they tossed the resumes in the trash.  That's largely the way it is for job applicants with disabilities. Imagine the plight of older workers who have lost their physical capacities, who have no idea how to argue for help, and are without rehabilitation counseling of a high order.  Who are the first people eliminated when companies are letting people go?  Older workers.  Age related disability is commonplace and accordingly the fact that the number of disability related social security applications has increased his not surprising.  What "is" astonishing is the degree to which the journalistic outlets above have entered the subject of disability and employment without regard to the recent history of workplace accommodation denials.  Successive Supreme Court rulings in the last decade have assured employers that they can quibble about the ADA's directives concerning employment flexibility for people with physical impairments.  The ADA Restoration Act of 2007 was designed to offset several court decisions limiting the ADA's functions guaranteeing employment accommodations, but let's be clear, the landscape is still very difficult for older workers.  What's particularly interesting in this cascading disability scam narrative is that Mr. Kowalski's original contention, that older people are in fact unlikely to find work once they lose physical functions, and that the numbers of people entering the SSDI rolls are not surprising–has been replaced by sensationalism, a matter that requires less analysis and seems to be popular.  

Enter Jordan Weissmann's article at The Atlantic. Weissmann's article begins: 

 "Imagine for a moment that Congress woke up one morning, realized that the United States was suffering from a paralyzing long-term unemployment crisis, and, in a moment of progressive pique, decided to create a welfare program aimed at middle-aged, blue-collar workers.  The one thing everybody could probably agree on is that it should help all those jobless 50-somethings find employment, right?  Well, as NPR's Planet Money argues in an eye-opening story, it turns out there already is a "de facto welfare program" for those struggling Americans.  The problem is, instead of getting the unemployed back on their feet, it pays them to give up work for good.  I'm talking about Social Security's disability insurance program, which over 20 years has quietly morphed into one of the largest, yet least talked about, pieces of the social safety net.  Since the early 1990s, the number of former workers receiving payments under it has more than doubled to about 8.5 million, as shown in Planet Money's graph below.  More than five percent of all eligible adults are now on the rolls, up from around 3 percent twenty years ago. Add in children and spouses who also get checks, and the grand tally comes to 11.5 million."

The idea that there's a "de facto" welfare program that's geared toward fake disabilities plays well. But the story is only possible if the reporter leaves out several facts. 

Fact: Disability is a social construction, not a medical matter.  This means if you're physical condition prevents you from engaging in a major life activity–standing, walking, lifting, seeing hearing, thinking and processing information, speaking–the list is long–then you are eligible for social security disability payments, as long as you are unemployed "because of your disability".  This is a very complex subject.  The word disability comes down to us (in its modern sense) from Karl Marx who used it to describe laborers rendered unfit to work in the industrial economy.  When we say disability is a social construction we mean, among other things that its co-determined by architecture, social attitudes, public education, the availability of accommodations, the flexibility of employers to provide workers with equivalent but different jobs–and most important of all, a progressive and inclusive cultural model.  When these things are absent a person is disabled.

Fact: Over the past decade programs and services for people with disabilities have been shrinking not growing.  People losing their vision find it harder to get orientation and mobility training or find access to assistive technologies.  People with spinal cord injuries are getting less rehabilitation training and assistance than they received even a decade ago.  A manual wheelchair costs around $12,000 and there are no programs providing financial assistance for manual wheel chair users. There are no credit or loan programs.  Services have been in steep decline all over the nation. 

Fact: Ableism (the unreflecting assumption that people with disabilities are deficient, incapable, maybe even dishonest) has been on the rise.  In a nation that has long been known for blaming the poor for their plight, its not surprising that people with physical traumas are now being pilloried in the public square of journalism.  Why not?  We will tell our uninformed readership that people with disabilities on SSDI are planning to never work again.  In fact, you can go off SSDI and return to the workforce.  In fact there are programs in place to help people do just that.  In fact people can go back to work if accommodations are provided. 

 Notice how Weissmann uses disability as a metaphor for the US economy. We're in a "paralyzing long term unemployment crisis"–this is a paratactic metaphor designed to frame a subtext which is purely ableist in its tenor.  The figuration of Weissmann's piece is that real people want to get out of paralysis but there are people who are pretending to paralysis, don't you see? 

Fact: From the earliest days of American film making, one of the most popular narratives was about people pretending to be disabled.  Surely physical difference means something nefarious is going on.  This idea still haunts the public nerve which is one reason the bizarre, unfeeling, sensation, neo-con reporting is gaining such easy traction. 

Fact: The numbers of people going on social security disability are not up significantly. 

Fact: There are regions of the country where, given the aging of the population, and the level of comparative poverty, the numbers of people with disabilities are going to be higher than one in five. 

Fact: Employers have no incentives to create accommodating work places for people with physical impairments. 

Weissmann writes that the increase in the numbers of disability claims under social security reflect a loosening of standards–that it got easier to claim you can't work during the last decade.  His source?  Economists.

Would you go to an economist if you wanted good information about dentistry?  Why believe their analysis that there really aren't more physically impaired unemployed people nowadays?

Fact: The truth is, we don't know how many people with disabilities we really have.  We have guesstimates, based on census modeling. 

Fact:  The census takers go from door to door in Baltimore and ask people if they can tell how many fingers they're holding up.  If they can't tell, then they're blind.  Simple.

Fact:  There's competing evidence to Weissmann's statistical offering that the numbers of people who are limited because they don't have accommodations has indeed been rising.  Disability is a matter of the constructed social and physical environment. 

Fact:  No major media outlets, not even progressive outlets cover disability issues in carefully analyzed ways–in point of fact they scarcely cover disability at all.

Fact:  As we cut rehabilitation programs, foil the ADA, and fail to provide easy access to disability friendly education we create people with disabilities.  Then we pretend they're crooks. 

  
        

~~~~~~~~~~~~~~~~~~~~~~~~~~~

Professor Stephen Kuusisto is the author of “Eavesdropping: A Memoir of Blindness and Listening” and the acclaimed memoir “Planet of the Blind”, a New York Times “Notable Book of the Year”. His second collection of poems from Copper Canyon Press, “Letters to Borges“ has just been released. He is currently working on a book tentatively titled What a Dog Can Do. Steve speaks widely on diversity, disability, education, and public policy. www.stephenkuusisto.com, www.planet-of-the-blind.com

 

Recent articles and broadcasts have created the appearance of a “baggy monster”–a walking, robotic hostility to people with physical differences. From Public Radio International and NPR, from Truthdig to the Huffington Post, articles, oped pieces, and radio programs have lately suggested a number of astounding things about the disabled. First was the Chris Hedges “cheerleading” squad, overtly rooting for a wounded war veteran to kill himself as a political act. Then the poorly researched and pathos driven reporting on “This American Life” suggesting there’s an epidemic of people declaring themselves “disabled” as a means of collecting social security disability payments. Nowhere does the associated reporting done by NPR’s Joffee-Walt recognize that statistically one in five Americans has a disability–that the United Nations recognizes this figure to be accurate worldwide. Accordingly there are over 56 million Americans with disabilities, and over 650 million disabled people around the world. Since disability isn’t static, just as populations are not static, the numbers go up. Aging nations have more people with disabilities than youthful countries. Aging regions of the United States will necessarily have more people with disabilities than younger regions. NPR and PRI have reported increases in disability “claims” as being suggestive of fraud, a narrative that’s as old as disability and civics but what NPR doesn’t seem to know is that old story has remained unchanged over the past 100 years. NPR didn’t bother to reach out to disability studies scholars to learn about the very subject they imagined they were covering. Can one imagine writing or broadcasting about people of color or women without including public intellectuals or scholars or policy makers whose works and days are relevant to the subject? So NPR doesn’t know that the very first movies distributed in the United States featured the themes of beggars and thieves who feigned disability to cheat the credulous public. NPR doesn’t know that those films were cash cows for a population that never actually met people with disabilities because, owing to the “ugly laws” and institutionalization, there were no real people with disabilities in the village square. It’s easy to talk about people you don’t know. It’s the easiest thing of all. And this is what’s happening: able bodied citizens, both neo-liberal and conservative, are using people with disabilities as a kind of tabula rasa, writing narratives across the backs of people they hardly know. This is indeed one of the oldest stories of all, one that’s familiar to every person who comes from a historically marginalized group. 

There are lives in the balance. Shaun Heasley’s story over at DisabilityScoop entitled “Despite Outcry, No Charges in Death of Man with Down Syndrome” recounts the death of Robert Ethan Saylor who died when police subdued him because he wanted to watch the film “Zero Dark Thirty” for a second time. Heasley writes: 

“A grand jury determined Friday that no crime was committed in the case of Robert Ethan Saylor. He went to see the film “Zero Dark Thirty” at a Frederick, Md. movie theater in January and wanted to watch it again after the showing was over. Three off-duty sheriff’s deputies who were working security at the venue were alerted when Saylor would not exit. They ultimately restrained him and Saylor was dead just a few minutes later.

A medical examiner found that Saylor died of asphyxia and ruled it a homicide, but ultimately the grand jury determined that charges were not warranted and that the deputies acted in accordance with their training.”

What emerges is the vision of police and reporters who are untrained about the real and complex subject of disability. Meanwhile, in a nation that has all the money it needs, the poor and physically challenged are painted as deceivers to fuel a public debate about government excess. So we cheer for the veteran who says his life isn’t worth a plug nickel and who announces he will kill himself. We shrug when an innocent man with Down Syndrome is effectively murdered by police. We glibly blame the victims in a business environment which will do anything, and I mean anything, to avoid giving accommodations to employees. It’s as though the United States has come down with the Stockholm Syndrome. Or something very like it.