Month: March 2013

 

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. 

 

 

Entelechy

 

Again with Aristotle, unseen treasure “zap” into poems,

no wonder tyrants hate the stuff.

Here comes Philoctetes with his stinking wound–

even he has poetry under his tongue–

even he makes the gods listen

like children at the orchestra.

 

When Zeus heard pain the first time

he thought insects were in his ears;

he wanted his mother,

then understood

he never had one.

There’s a piece by Chana Joffee-Walt on NPR’s website entitled “Unfit for Work: the Startling Rise of Disability in America” which is so ill informed about its subject it reminds me of one of those Ronald Reagan stump speeches. Driven by anecdote rather than cultural analysis, her thesis is simple: the number of unemployed Americans receiving disability benefits has skyrocketed over the past twenty years. She intimates without fully declaring it, that there’s a vast social “scam” taking place–in the absence of good middle class jobs, and following the “end welfare as we know it” enterprise, poor people simply decline into aches and pains, thereby getting themselves declared unfit for work. Alas, Joffee-Walt hasn’t done her homework, a matter that may be inapparent to many of NPR’s readers, just as Reagan’s audiences were unaware that behind the curtain the Gipper believed “facts were stupid things” and was untroubled by any and all of the misrepresentations of social programs that propelled his candidacy for president. Such arguments depend on pathos rather than facts. Joffee-Walt fails to address the biggest fact in the room, that disability is a social construction even more than a medical category, and in turn the artificial architectural and physical constraints marshaled against people with disabilities are both products of history and the industrial revolution. One wishes she had bothered to read Lennard J. Davis’ essay “Constructing Normalcy: The Bell Curve, the Novel, and the Invention of the Disabled Body in the Nineteenth Century”. Disability is entirely economic and has been so since the move to industrial models of labor. Those who cannot work in the factory were labeled “disabled” and that model of human economic utility largely continues to this day. Reasonable accommodations are the solution for workers whose physical capacities decline but as any seasoned person with a disability who has managed to remain in the workforce knows, obtaining accommodations is often so difficult, so humiliating, so Kafka-esque, most people give up. 70% of the blind remain unemployed in the United States, many of whom might well be able to work with the proper accommodations but employers don’t want to provide accommodations fearing the expense, though in point of fact most workplace accommodations are relatively inexpensive. Think of a laborer, someone who is required to lift boxes. He suffers a ruptured disc. He can’t lift boxes. Perhaps he could be retrained to work with software. Most businesses resist this kind of accommodation, preferring medical and social determinations that are no more sophisticated than those the Victorians had. Another way to say this is that a nation that believes in work is also a nation that believes in accommodations. Joffee-Waitt misses this dynamic and ongoing dialectic and fails to illuminate the true nature of disability and joblessness. 

       

Technorati Tags: NPR, Chana Joffee-Walt, Lennard J. Davis

We want to thank Elizabeth Aquino for her attention to the story of Tomas Young whose worsening paralysis has led him to announce that he has chosen to die. War goes on long after the smoke has cleared. It enters the cells of our bodies, even the bodies of those who stayed home. War takes up residence in our food and turns up in what we say and what we do not say. All life appears cheapened and coarse. We stop paying attention to human dignity, redefining it as utility, waterboarding isn’t torture; the national security state doesn’t impinge our freedoms. The language of heartless approximations is easy. The devaluation of life is not easy. It means we have given up on people who look like us and those who don’t. We are all now like the poet Cesar Vallejo who wrote about tearing out his heart and putting it under his shoe. It doesn’t matter whether we believe in Carl Jung’s “collective unconscious” or we’re worshipful–we are more jaded and morally impoverished because of the Bush wars. We don’t need data though there’s plenty of it, the thousand plus shootings in the US following the carnage in Sandy Hook, the evidence of rising intolerance that leads to rape culture.

When journalists trumpet the announced suicide of a wounded and depressed veteran because the story exemplifies the heinous and excruciating domestic effects of the wars in Afghanistan and Iraq, then they too become morally devalued. Those who keep silent or who turn the page are also reduced.

The only way out of this enervation of the soul is perhaps best described by Jesus:

“You have heard the law that says, ‘Love your neighbor’ and hate your enemy. But I say, love your enemies! Pray for those who persecute you! In that way, you will be acting as true children of your Father in heaven. For he gives his sunlight to both the evil and the good, and he sends rain on the just and the unjust alike. If you love only those who love you, what reward is there for that? Even corrupt tax collectors do that much. If you are kind only to your friends, how are you different from anyone else?” (Matthew 5:43-47 )

 

Last week I wrote the following on this blog about journalist Chris Hedges' post on Truthdig concerning the decision by paralyzed veteran Tomas Young to end his life–a decision that Hedges doesn't question and which is being spread across news outlets without interrogation. That a depressed, disillusioned, and paralyzed veteran would chose to end his life seems "right" to liberal commentators because in point of fact they haven't examined their assumptions about disability and the actual living of disability lives:

via www.planet-of-the-blind.com

I think the Pope's decision to kiss a man with a disability is a minor infraction compared to this story.

The TSA (Transportation and Security Administration) claims on its official blog that a wounded Marine was not asked to remove his prosthetic legs and forced to stand from his wheelchair as the Wasington Times first reported.

What seems clear is the TSA’s inability to acknowledge how humiliating it is for all travelers with disabilities to undergo screenings–I’ve been asked to hand over my guide dog, have been pushed, prodded, left to grope for my possessions, have been summarily and rudely ordered about, and generally demeaned for years. I’ve had good experiences of course, but what’s indisputable is how much my navigation of security checkpoints is influenced by the quality of the staff on duty at any given moment. Travelers with disabilities receive conditional or chance receptions at airports.

One may say the same for all travelers–stories of parents with small children who are unduly frightened or traumatized are legion. There’s no doubt the TSA has ongoing problems both of judgment and public relations.

As bad as the disability experience is at airports I will say to any and all who wish to privatize the TSA (for there’s always a call for this) that the old days of on the cheap security companies meant even worse treatment. I remember non English speaking agents dressed in maroon jump suits, yelling at me because I had a dog.

The TSA says the wounded marine “chose” to stand as if that settles the matter. But in my experience people don’t spontaneously make bad and painful choices. The TSA has some serious work to do in terms of its cultural awareness of disabilities.